CALIFORNIA STA~E UNIVERSITY, NORTHRIDGE

NUTRITIONAL ATTITUDES ,..:\ND PRACTICES OF

PARENTS OF CHILDREN V.1ITH CAi"JCER

A thesis submitted in partial satisfaction of the requirement for the degree of Haster of Science in Home Economics by Barbara J. Luboff

June, 1981 The Thesis of Barbara J. Luboff is approved:

Ann R. Stasch, Ph.Do ( Connnittee Chair)

California State University, Northridge

ii To my wonderful children, Shari, Kevin and Alyssa~ and to my husband, Gary, for his understanding, encouragement, and faith in my potential; and to the many children who have cancer, for their courage which provided my inspiration to undertake this projecto

iii ACKNOWLEDGMENTS

Many individuals contributed to this research project. A very spec.ial thank you to Dr. Ann R. Stasch, Connnittee Chair, for her encouragement, time, and guidance throughout my study. I would like to extend my appreciation to my committee members, Dr. Marjory L. Joseph and Dr. Christine H. Smith, for their assistance. I would also like to thank the following people at Children's Hospital of Los Angeles: Dr. Stuart Siegel, Chairman of the Hematology/Oncology Division, for his time and expertise, and especially for his belief in the value of nutrition, all of which made this research project possible; Judith Ashley and Fran Earl, both members of the Hematology/Oncology Team, for their suggestions regarding the questionnaire; all of the physicians in the Hematology/ Oncology Division for their-cooperation; and all of the parents who took their time to participate in this study.

iv CONTENTS

Page

DEDICATION • o • • o. 0 • •. 0 •. • •. • o. 0 iii

ACKNOWLEDGEHENTS . •. 0 • • 0. •. 0 • • iv

LIST OF TABLES o 0 0 0 • • • 0 0. 0 0 0 ix

ABSTRACT . . . 0 . 0 0 0 . . . .. 0. . . 0 0 .. 0 0 X Chapter

1. INTRODUCTION . . 0 . . . . . 0 . . . 0 1

Purpose of the Study 0 . 0 . . . 0 . . . 1

Justification 0 0 • 0 • 0 o. o. o. 0 •. 2

Objectives • • • • 0 • o. • •. •. 0 o. 0 • 0 2

Assumptions 0 0 0 0 0 • 0 • 0 • 0 •. •. • 3 3. Limitation • o •- • o. • o. o • o

Glossary o • • 0 • 0 0 • 0 0 0 0 0 ~ 0 • 4.

2. REVIEW OF THE LITERATURE 0 0 o. 0 0 • 0 • 0 • 7

What is Cancer? 0 • • • 0 0 0 0 o. 0 0 0

Cancer Treatment • • 0 0 0 0 0, . 0 0 Q. 0 9

Cancer in Children 0 0 0 • 11 Introduction to Nutrition . 14

Nutrition and the Child v1ith Cancer 0 0 0 0 16 General Effects of Cancer on

Nutritional Status • 0 • • c 0 • Q_ 0 0 18

v Chapter Page

~norexia-Cachexia Syndrome · 24 Nutritional Therapy for the ·

Cancer Patient .• ~ ~ • ~ •• 0 o. Cl. • 27

Rationale of Nutritional Therapy 28 Nutrition and the Pediatric Cancer Patient • • • • • • • • • • o 32 Specific Pamphlets Written for the Cancer Patient • . 33

Nutrition Misinformation 0 o. 0 0. 0 0 0 36.

Confusion and Concern Over Nutrition 36

Does a Rational Anti-Cancer Diet Exist? 40!' ->'\ The Public and Nutrition 41)

METHODOLOGY 0 0 0 44

Procedure • • • • • • 0 • 0 • • 44

Data Collection • 0 0 0 0 • • 0 • • 45 Analysis of Data . 45

4. RESl~TS AND DISCUSSION 46 Setting of the Study .. . 46 Biographical Information on the Respondent and Patient . • . • . 48 Background of the Respondent 48 Background of the Patient . . 49 Respondent's Interest in Nutrition 52

vi Chapter Page

Interest Since Diagnos~s . . . . • • • . 52 Anti-Cancer Diets 52 Nutrition as an Avenue to Involvement in Therapy 53 Nutrition Information 54 Sources of Nutrition Information . . . . . 54 Desired Sources of Nutrition In format ion 56 Cancer and Diet 57 Cancer Quackery 57 Diet as a Cause of Cancer 57 The Effect of Proper Diet 62 Avoidance of Foods . 62 Cancer and Vitamins 64 Child's Nutritional Status . 65 Changes in Appetite 68 Changes in Weight 69 Specific Areas for Nutrition Education ...... 69 5. SUMMARY, CONCLUSIONS, AND RECOMMENDATIONS . . . 71 Summary 71

Conclusions 72

vii Chapter Page

Conclusions • 0 0 0 0 0 0 ~ • 0 0 0 0 72

REFERENCES CITED • • 0 • • o o o o o a 77

APPENDIX 0 0 0 0 0 0 0 0 • 0 0 • 0 • 0 • 0 82

viii ,, .

TABLES

Table Page

1. Nutrition Info ~'"Ill at ion and Irrvolve:rrient Crosstabulation by Ethnic Group 55 2. Diet and Cancer, Cross tabulation by Status of the Disease . . . . 59

'l .Jo Diet and Cancer, Crosstabulation by Respondent's Education ...... 60 4. Diet and Cancer, Crosstabulation by Ethnic Group ...... 61 5. Nutritional Problems, Cross tabulation by Child's Age ...... 67

ix ABSTRACT

NUTRITIONAL ATTITUDES AND PRACTICES OF

PARENTS OF CHILDREN WITH C~~CER

by

Barbara J. Luboff

N~ster of Science in Home Economics

The literature indicated a relationship between nutri­ tion and cancer, including cau.sative factors, lm~~ered nutritional status, nutritional support, and unconventional nutritional "cures." Since cancer is prevalent in children and children have greater nutritional needs than adults, the objective of this study was to determine parental attitudes and practic.es of children with cancer.

A survey of parents was conducted at Children's Hospi­ tal of Los Angeles, California. The results showed a very high interest in nutrition. Parents felt they lacked adequatt:."'. nutrition information. They v.ranted information from the· doctor, dietitian, and specific booklets regard­ ing their child's nutritional problems, proper diet for a

X child with cancer, and how to distinguish solli,d nutrition advice from "quackery." Although parents were unsure of the role of diet in cancer causation and the effects of proper diet, they were avoiding, to a greater extent than the general population, serving foods alleged to cause cancer. Many parents were prescribing vitamins for their children. Although health professionals in the clinic were aware that some patients had been on "anti-cancer" diets, few parents volunteered that they had put their children on any of these regimens. A gap existed between the parents' interest in nutri­ tion and the amount of nutrition information received. Parents were confused over the role of nutrition due to the plethora of "misinformation" available. The results indi­ cated a strong need for sound and effective nutrition education.

xi Chapter 1

INTRODUCTION

Purpose of tht?. Study

Cancer has been knmvn to man through the ages. It is now one of the most feared diseases. In the last twenty years evidence of a relationship between nutrition and cancer has been noted. This relationship includes causa­ tive factors in man's diet, development of anticancer drugs from knowledge of metabolism, effects of cancer and cancer therapy on nutritional status, and application of nutritional support, some of the information maybe beneficial and some may be quackery. Children are not exempt from cancer. Cancer i.s the second leading cause of death in children, while accidental death is first. Children's canc.e!." survival rates are improving. Childhood cancer can no longer be deemed invariably fatal. The child must: have proper nutrition during and aft'er his therapy to enable him to develop both physically and mentally. The child's need for proper nutrition is compounded by the effects of cancer and cancer therapy, which can lower nutritional status, and thus lower the child's immunocompetence and response to disease. In view of the interest and research in the

1 2 relationship of nutrition to cancer, and the special needs of children with cancer, it was considered of value to conduct an informational survey directed to parents of children with all types of cancer.

Justification

The results of this survey should be important for the following reasons: (1) to provide hematologists/oncolo- gists, radiologists, dietitians and nutritionists, and all those who deal with pediatric cancer patients information that should aid in treatment of their patients; (2) as a foundation upon which to develop and implement nutrition and cancer education programs; (3) to make parents aware of unproven and potentially hazardous nutritional remedies; and (4) to give the parent, through nutrition, an avenue for greater participation in the treatment process.

Objectives

The objectives of the survey were to determine the following: (1) how parents feel about nutrition in relation to their child's illness; (2) whether parents are confu.sed over the role of nutrition in cancer therapy due to the proliferation of both sound information and misinformation; (3) where parents e.re seeking nutrition information and assistance; (4) where parents would like to be able to.obtain nutrition information and 3

assistance; (.5) what nutritional problems children with cancer are having; and (6) in which areas parents would like more information regarding nutrition and cancer.

Assun:iptions

The following assumptions were made: (1) the questionnaire was a valid means of collecting data to be used in meeting objectives of the study; (2) parents would not communicate with each other regarding the questionnaire, during the time in which the study was conducted; (3) the Spanish version of the questionnaire was equivalent to the English versiono

Limitation

The study was limited by being conducted only at Children's Hospital of Los Angeles, California. .. 4

Alimentart Canal - the tubular passage that extends rrom mout to anus and functions in digestion and absorp­ tion of food and elimination of w·aste; also called the gastrointestinal tract. Anorexia - loss of appetite for food. Cachexia - a condition characterized by malnutrition and wasting of body tissues which may occur during the course of a~ illness. Cancer - malignant disease marked by abnormal growth of cells. Normal tissues can be invaded by abnormal cells; the abnormal cells can also leave the original site and form new colonies elsewhere in the body. Carcinogen - a chemical or other agent that causes cancer. Carcinoma - cancer of the tissues which cover or line the body surface and internal organs. Chemotherapy - the use of chemical agents in the treatment of aisease; many of these agents closely resemble sub­ stances nee.ded by cells for normal growth. The tumor uses the drug instead, and "starves" for lack of proper substance. Dysph3gia - difficulty in swallowing.

Electrolate~ - a general term for the minerals necessary to provi e the proper environment for body cells and proper fluid balance. Emaciation - wasting of the body; excessive leanness. Enteral Nutrition - refers to feeding by way of the digestive tract. Etiology - the study of causes of diseases. Hematology- the study of blood and blood-forming organs. 5

Hyperalimentation .,. intravenous administration of nutri.-. ents, by-passing the gastrointestinal tract. It is also called Total Parenteral Nutrition (TPN}. Leukemia - an acute or chronic malignant disease charac­ terized by abnormal numbers of immature white blood cells (leukocytes} in the tissue or bloodstream.

LyP!phoma - a tumor of the lymphatic s-ystem (:t_ncludes organs and vessels}. Malnutrition - condition in which the body is receiving too little nourishment or the wrong kind.· Melanoma - a cancer of the pigment cells of the skin, often arising in a pre-existing area such as a mole.·

Metabolism ~ refers to the process by which the cells of the body use absorbed nutrients to maintain the body and its activities. Metastasis - the spread of cancer through the blood and lymphatic vessels and estab,lishrnent of new groups of those cells at locations distant f·rom the primary tumor. Neoplasm - new or abnormal uncontrolled growth, such as a tuinor. Nutrient - a substance that is necessary for growth, normal functioning, tissue repair, and mainti:dning · life. Essential nutrients are proteins~ minerals, fats, carbohydrates, vitamins and water. Nutrition - the process of food intake, release of nutrients from the food, and the absorption and use of nutrients by the body. Oncologist - a physician or surgeon who specializes in cancer. Radiotherapy, radiation theranv .,. a treatment which is based on the capacity of atomic particles and rays to destroy living cells.

Remission .,.. refers to the period ~1hen the symptoms of a disease have ceased. Sarcoma .,. a cancer of the connective tissue, bone, cartilage, fat, muscle, nerve sheath, blood vessels, lymph system or glands. · 6

Tumor - a mass or swelling; the word "tumor" carries no co~notation of being either benign or malignant. ·Chapter 2

REVIEW OF LITERATURE

f What is Cancer?

Cancer is ~ow the most feared of human diseases. Its victims are counted among men and women, among children as well as the aged, among all races, among all "'alks of life, and people throughout the vJOrld. There are few families in the United States who

have not had personal experiences with cancer. This is almost inevitable, since cancer is now the number two cause of death, heart disease being number one. Over the course of a lifetime of seventy years, cancer is destined to afflict one out of four persons, and send one out of seven to the grave. Every two minutes someone in the United States dies of cancer. Every year the direct cost of cancer is in the billions of dollars -

cold figur~s that do not measure the human suffering ·and grief to the cancer victim and his familyo The word cancer is derived from the G:r-eek v;rord for crab, karkinos. Among its many synonyms are malignant tumor and malignant neoplasm (from the Greek for new growth). Subgroups of cancer, describing the body

tissue.s of origin, incl,1de car~inorna, sarcoma, melanoma,

7 lymphoma, leukemia, and many other related or combined

terms.

Cancer is a word that stands for a great group

of diseases that afflict man and animals. Cancer can

arise in any organ or tissue of which the body is composed.

Its main characteristic is an abnormal, seemingly ~Dre­

stricted growth of body cells, with the resultant mass

compressing, invading and destroying contiguous normal

tissues. Cancer cells can then break off or leave the

original mass., and be carried by the blood or lymph to

distant sites of the body. At these new sites, secondary

colonies, or metastases, may develop and cause further

destruction of normal tissue. This semi-independent

behavior of cancer cells, called.autonomy, prevents the

cells from fulfilling functions useful to the body.

Another important characteristic of cancer is its

appearance under the microscope. The ind-ividual cells

vary in size and shape, and the orderly orientation of normal cells is replaced by.disorganization that may

be so complete that no recognizable structures remain.

This loss of normal appearance is called anaplasia

(Shimkin, 1978). \ 9

JI Cancer Treatment

Cancer is a group of diseases that involves all

the organs of the body. There are over 250 different 1 kinds of cancer (De Vita, 1980} . The treatment plan

is tailored to an individual patient's needs. :Factors

to consider are: the patient's medical histo~y; general health; the type and location of the cancer. The three

main methods of treating cancer are (1) surgery 1 (2) radiation therapy, and (3) chemotherapy (treatment with

anticancer drugs.) In many cases, treatment consists of two or all three of these methods, a procedure called

/1 multidisciplinary therapy (NIH 79-1566) ~

Surgical treatment was the first important develop~ ment in the management of cancer. Surgery chiefly involves removal of the cancer and repair of the affected organs.

In addition to the cancer itself, certain types of appar­ ently healthy tissue, such as lymph nodes, may also have to be removed to prevent spread of the disease. The greatest disadvantage of surgery alone is that it cannot remove cancer cells that may have been shed into the blood stream (De Vita, 1980)~ The second advance in the treatment of cancer was the discovery that x-rays could shrink tumors. Radiation therapy or radiotherapy involves attacking cancer with x-rays or rays from cobalt, radium or other radioactive 10 substances. The basic principle of radiation therapy is to focus the beam of radiation on the cancer at doses that will destroy it with minimal damage to surrounding normal tissues. Usually a series of radiation treatments are given. In most cases the radiotherapy is given in daily, fractionated doses over a period of weeks. In some cases, a radioactive substance is placed directly on or in the body (NIH 79-1566) .

Surgery and radiation therapy share similar charactet­ istics and limitations. Both are local forms of treatment and most often kill normal cells in order to kill can- cer cells. However radiation therapy has the advantage that often disfiguring surgery can be eliminatedo Like

surgery 1 it does not attack those cancer cells that may have shed into the blood stream (De Vita, 1980) '.'

Chemotherapy is the newest method in the treatment of cancer. Anticancer drugs can kill cancer cells in most parts of the body since they enter the bloodstream and circulate throughout the body. Selected drugs inter- fere with tumor cell synthesis or metabolism, inactivating those cells of tumor or normal tissue that are dividing at the time of the action of the drug(_s) (NIH 79-1566).

Chemotherapy was first used in the treatment of leukemia. The success in the treatment of leukemia provided a "window" to the treatment of solid tumors.

Chemotherapy when ·used in treating leukemia could be 11 watched. By taking blood from the patient, the efficacy of the treatment could be observed. Such close observation

is not possible with most other human tissue. Following

the success with leukemic patients, doctors using chemo-

therapy encouraged the surgeons and radiotherapists who

treat solid tumors to follow up surgical or radiation 3 procedures with a regimen of drug treatment (LSA, 1974).

Currently chemotherapy is used to treat certain types of metastatic solid tumors, lymphomas, and leukemia.

Multidisciplinary therapy involves using two or three methods to treat individual cancer patients. Phy- sicians have long used surgery and radiation in this way. Now in many cases physicians also prescribe chenio-

t1/ therapy (NIH 79-1566)~ Jn Cancer in Children

Childhood cancers are quite different from those that affect adults. They tend to grow more rapidly, and they occur in different organ systems. Children rarely get cancers of the lung, breast, or colon, the most common cancers in adults.

Although the etiology of the vast majority of human cancers is unknown, in all likelihood, the causes of can- cer in children are quite different than in adults. A child has not lived long enough to have developed cancer because of years of exposure to a cancer-causing chemical.

Rather, childhood cancers are more likely related to 12

some prenatal influence such as exposure to radiation

or a cancer causing hormone, to a defect in the immunity

system or, perhaps, to exposure to some as yet undefined

infectious agent, or to some totally unrecognized cause.

The dreaded complications of cancer therapy in chil-

dren are also d~fferent. Children's cancer specialists

are always looking for ways to improve treatment, both

to cure patients and to diminish damaging side effects.

Sometimes the powerful treatments ·used to cure cancer

in children create problems years after the cancer has

been successfully eradicated. Among these problems may

be disturbances in growth, permanent damage to body tissue

(such as the liver and other organs), sterility, and even an increased risk of a second neoplasm (Pochsdly~\ 1980; Peterson, 1976).

Cancers in childhood comprise a special group.

Approximately 40% of all cases are leukemia, and an addi-

tional 10/~ are lymphomas. Among the solid tumors, brain

tumors and other neural tumors such as neuroblastoma

·are next in frequency. Systemic tumors are largely sarco-

mas (bone and connective tissue) and not carcinomas

(epithelial tissue). Multidisciplinary therapy and

intensive combination chemotherapy have made it possible

to show significant advances in the outcome of childhood

cancers. Causes of mor·tality are still frequentl} the

conseqne.nces of disease and therapy, but it appe,;: .. now 13 that malnutrition is contributing to the cause of mortality I (Van Eys, 1977)7

The following are the main types of cancer found in children:

(1) Acute lymphocytic leukemia (also referred to as acute lymphoblastic leukemia) is the principal type of leukemia that affects children. The disease is a form of cancer and is character­ ized by abnormal numbers of immature white blood cells (lymphocytes). These cells appear in the blood and bone marrow. The treatment consists of 1 radiation and chemotherapy (NIH 80-1573).:

(2) Hodgkin's disease is a forlil of cancer that affects the lymphatic system, a part of the immune system that plays a major role in the body's ability to fight infection. The disease arises in a single lymph node and may spread to other lymph nodes, the spleen, liver and bone marrow. The treatment con­ sists of surgery, radiation and chemotherapy (NIH 79-172)~

(3) · Non-Hodgkins Lymphoma is a tumor which can develop in any lymphatic tissue in the body. The treatment consists of radiation and chemo­ therapy (NIH 80-2038)

(4) Brain Tumor like other cancers, is a disease of the body's cells. The treatment often consists of a combination of surgery, radiation and chemotherapy. Chemotherapy is more difficult in this area due to the "blood- 14

brain barrier"; new drugs have been developed recently to penetrate this barrier (NIH 79- 1558).

(5) Wilms' tumor is a form of kidney can­ cer that only appears in children. The treatment consists of removal of the affected kidney and a combination of radiation and chemotherapy (NIH 80-1570).

(6) Sarcoma also known as bone cancer, develops in the connective tissue and suppor­ tive tissues of the body. Osteogenic sarcoma begins in the marrow spaces inside the mid­ shafts of bones. Treatment consists of surgery (sometimes amputation is necessary), radiation, and chemotherapy (NIH 80-15 71). ~,

(7) Neuroblastoma is a solid tumor derived from tissues of the sympathetic nervous systeill. It is frequently found in the abdomen. Treatment will vary (NIH 80-2038).

Once a child with any type of cancer has responded to the initial induction therapy and is free of evidence of disease (remission), maintenance/prophylactic therapy may continue for the next several years (Peterson, 1976).

Introduction to Nutrition

Good nutrition is necessary for good health. By one definition, nutrition is the combination of processes by which the livin~ organism receives and utilizes 15

materials (food) necessary for the maintenance of its

functions and for the growth and renewal of its components.

The concept of nutrition encompasses food and its relation-

ship to the well being of the human body. This includes

(1) the metabolism of foods; (2) the nutritive value

of foods; (3) the qualitative and quantitative requirements

of food at different age and developmental levels to meet physiological changes and activity needs; and (4) the economic, psychological, social, and cultural factors that affect the selection and eating of foods.

The condition of the body resulting from the utiliza- tion of the essential nutrients (fats, carbohydrates, proteins, vitamins, minerals, and water) available to the body is termed nutritional status. The essential nutrients must be both supplied to, and utilized by, the body for good nutritional status. Good nutrition is essential for normal organ development and function; for normal reproduction, growth, and maintenance; for optimum activity and working efficiency; for resistance to infection; and for the ability to repair bodily damage or injury.

Healthy growth and-development in the child depend highly upon good nutrition. From the beginnings of growth in the prenatal period, to the time when the child attains full size as an adult, the food that s/he eats and his/her 16 ability to convert that food into energy and new body tissues will influence the state of his/her health, not only as a child but throughout life. It is very important that the diet be nutritionally adequate throughout childhood. Because growing children are building bones, teeth, muscles, and blood, they need more nutritious food in proportion to their weight than adults (Krause, 1979).

The special biology and behavior of the child make nutrition an even more important adjunct to cancer ther""' apy than is true for the adult. There are several unique features that point to the impor:tance of nutritional therapy for the child with cancer: (1) childhood cancer is no longer invariably fatal -""' it is responding well to treatment, therefore the child's nutritional status can no longer be ignored; (2) the child must have continued growth, since both physical. and mental development are dependent upon adequate "nutrition; (3) children have unformed yet strong food preferences that must be con.,. sidered; (4) therapy induced malabsorption syndromes are frequent and more severe in children, with rapid onset in the very young, and often with fatal outcome if not managed properly; (5) there are many relationships between nutrition and immunity and cancer; and 17

(6)_ children with their unchallenged immune systems are more likely to be hurt by malnutrition than adults / (Van Eys, 1977) 7

Even under the best of circumstances, providing chil~ dren with adequate quantities of nourishing food can be a problem. When the child is sick, the difficulties are enormously cornponnded. The general state of the body's health has a great impact on appetite and tolerance for food. Further complicating the situation are emotional responses to illness, which also affect the desire for and ability to handle nourishment. When an illness is of relatively short duration and full recovery is expected, problems involved in feeding children are not generally acute. The body can easily survive brief periods of what would ordinarily be consi-. dered malnourishment. From a nutritional point of view, any long-term illness is harder to handle because of the extended length of time the body is deprived of good nourishment. The nutrition of children with cancer presents var- ious problems. Not only is the state of ill health pro- longed, and levels of nourishment low for an extended period of time, but both the disease and the treatment can adversely affect the child's nutritional status. These effects can be compounded by the child's emotions (Sherman, 1979).,&/ 18

The General Effects of Cancer on Nutritional Status

A major indication of the presence of a malignant tumor in the body is cachectic wasting. Cancer affects the general metabolism of the body. It does more than increase the nutrient needs of the host, it also alters

the normal metabolic pathways 0 The effects of the tlUD.or on the host's-metabolism are:

(1) Changes in energy metabolismt including alterations in fat and carbohydrate metabolism. For reasons still unknown, thE? t1liD.or shows pre­ ference for using fat rather than carbohydrate in energy metabolism; this causes a dramatic loss in body fato This selective removal of nutrients by the tumor results in alterations of the intermediary metabolites of the host, forcing the use of more expensive pathways in terms of energy (Munro, 1977).

(2) Disturbances in protein metabolism can be demonstrated. The growing tumor mobilizes the tissue proteins of the host. As a result muscle protein metaboiism and serum albumin turnover are increased (Munro, 1977)1!

(3) Iron metabolism is altered. Possible explanations for this finding are the avail­ ability of iron for forming heme may be inhi­ bited, and porphyrin-containing enzymes seem 19

to be less active. The result is anemia (Munro, 1977).

(4) Changes in various nutrient levels have been found in blood, such as low levels of ascorbic acid and zinc, and elevated levels of copper (Munro, 1977) /y~

(5) Hormonal balance is changed. Lowered levels of insulin and increased levels of adrenocortical hormones have been found (Munro, 19 7 7) o N:~;

(6) Impairment of insulin and increased levels of adrenocortical hormones have been found (Munro, 1977)o

(7) Impairment of the immunologic system has been found. Eiber demonstrated a rela­ tionship between the extent of malignancy and the loss of skin response to the antigen-­ dinitrochlorobenzene (Ei~er, 1975).

To those who see the cancer patient, the most obvious symptom of'cancer is weight loss--contributed by all of the· above abnormalities (Munro, 1977). '"\-"'

General Effects of Cancer Therapy on Nutritional Status

Cachexia, a general condition of weakness, anemia, and emaciation, and malnutrition are among the major causes of death in patients with advanced cancer. Anorexia 20 and progressive weight loss are commonplace. Cancer therapy, which can include chemotherapeutic drugs, radiation and surgery, affects the rest of the body as well as the cancer. The drugs may produce nausea, vomiting, oral pain, diarrhea, constipation, fever and chills, loss of taste sensation, lowered immunity, fur- ther decrease in appetite and physical activity. These efff~cts along with the biochemical effects, such as dis­ turbances in metabolic pathways, and histological injuries to major organ systems, may leave the patient with a large nutritional deficiency (Blackburn, 1977)." Nausea and vomiting are the most common and innue- diate problems of almost all chemotherapeutic drugs. The result is increased lack of appetite, fluid electrolyte imbalance, general weakness, and continued weight loss. Ar:eas vulnerable to chemotherapy as cited by Ohuma ''"\·-r\ \ (19 7 7) ·, 'are:

(1) The alimentary canal is one of the most vulnerable targets of chemotherapy. Oral ulcer­ ation, pharyngitis, esophagitis and other mucosal toxicities are commonplace. These re­ sult in the patient being unable to tolerate food, which in turn causes dehydration and further deterioration of the patient's nutri­ tional status. These effects on the intestinal mucosa can result in the development of malab­ sorption syndrome, which again will lower 21 nutritional status. In addition, these muco­ sal toxicities can cause diarrhea, which in turn can result in dehydration, electrolyte imbalance, and accelerated malnutrition.

(2) Another target of chemotherapeutic drugs is the blood forming system, problems may arise such as leukopenia (a hematological toxicity characterized by an abnormal decrease in. the number of white blood cells) and thrombocytopenia (an abnormal decrease in the number of platelets). Leukopenia is often accompanied by infection, fever, chills, anorexia and reduced energy consumption. These will add to the deterioration of the patient's nutritional status. Anemia, another nutritionally important consequence, is fre­ quently seen after administration of chemother­ apeutic drugs, possibly due to the drug's interface with DNA synthesis in the cell.

(3) The central nervous system is also affected by chemotherapeutic drugs. These drugs can inflame the lining of the brain and increase cereb~ospinal fluid pressure. The result can be confusion, insomnia, dis­ orientation, headache, nervousness, and some­ times more severe psychiatric reactions.

(4) The liver, which plays a critical role in overall nutrition, is often influen­ ced by chemotherapeutic drugs. Anorexia is particularly common after hepatic injury. 22

Hypoalbuminemia (a classic form of malnutri­ tion), jaundice, interference with bile flow, and hepatic tissue fibrosis are frequently seen.

(5) Pancreatic dysfunction is caused by some chemotherapeutic drugs. The result is abnormal glucose tolerance tests, indicating either hypoglycemia or hyperglycemia.

(6) Cardiac damage is a serious complica­ tion of some chemotherapeutic drugs. An extreme case would be congestive heart failure.

(7) Other effects of chemotherapeutic drugs are renal toxicity, local tissue irrita­ tion, and systemic effects. Since many of the drugs are designed as inhibitors of metabolism of glucose, amino acids, lipids, or vitamins; their effects can be felt through­ out the body. The complications and their nutritional impact are vast, but must be view~d in the proper perspective. The risks are small when compared to the consequence of untreated. cancer.

Radiation therapy can cause many of the same problems as the chemotherapeutic drugs. The nutritional problems are related to the area receiving radiation. Radiation treatment to the abdominal cavity, for example, can cause nausea, vomiting, and diarrhea·, which can in turn cause dehydration and malabsorption of nutrientso Treatment: of the head, neck, or chest areas :may affect the 1nucous membranes in the mouth, throat, or esophagus causing these areas to become dry and s.ore; difficulty in swallow­ ing and alteration in taste perception nay also occur. Radiation treatment of the head and neck area may also contribute to increased dental caries and other dental problems (De T.'lys, 1977) Surgery, chemotherapy and radiation therapy, can affect the patient's nutritional statuso Streis associa~ ted with surgery--loss of blood, tissue breakdm.m, vomit...; ing, and fever--increases the need for nutrients. Con­ finement to bed and rest.riction of food intake after an operation do not allow the nutritional deficiency created by surgery to be corrected immediately. If appetite and nutritional status are poor before surgery, an additional strain is placed upon the patient (NIH 80-2038).e Any cancer or surgery involving the alimentary canal or areas of the brain associated ~vith appetite control can drastically alter the patient's ability to take in or handle food. Surgery to the gastrointestinal tract--much less common in children than adults--can cause malabsorption of essential nutrients and a "dumping 24 syndrome," characterized by nausea, cramps, S'tveating,

l > > i > and faintness (Sherman, 1979) ". ·

Anorexia-Cachexia Syndrome

Anorexia, or loss of appetite, is one of the most common problems associated with cancer and its treatment.

Cachexia, or severe weight loss and wasting of body tissues, may result from loss of appetite, other effects of the disease, or from treatment. This syndrome is difficult to halt and reverse once it appears (NIH 80-2038).

Anorexia-cachexia syndrome has been observed in one-third to two-thirds of patients with various cancers.

It was the most frequent single ~ause of death in cancer patients prior to the introduction of aggressive chemo­ therapy and radiation therapyo Its incidence may have increased with these more aggressive therapies.

The major pathological characteristics of the syndrome are loss of appetite, early satiety, increased basal metabolic rate and energy expenditure (despite the reduced caloric intake), loss of body protein, fat and other components leading to a significant weight loss, abnormalities in carbohydrate metabolism, water and electrolyte abnormalities~ anemia, and marked weak- ness and debility (Theologides, 1976). Q '

Holland (1977) feels that anorexia associated with cancer c&i be divided into three general areas: (1) transient anorexia; (2) anorexia related to treatment; and (3) anorexia related to disease. In addition, in each area it is important to determine if there is a psychological component and if so, treat it with psychological techniques as well.

Transient anorexia is found at the time of initial diagnosis. This is a time of tremendous emotional stress. Weight loss around this time is probably related to psychological stress rather than the early cancer, as is often assumed. Anorexia·can be related toperiods of pain and discouragement. When a treatment fails and the future looks bleak, anorexia may occuro Presence of pain, lack of a sense of well being, anxiety for

the future 1 and hospitalization, itself, "l;vill diminish the possibility of "enjoying a good mealo"

Cancer treatment can cause anorexia. Operations may produce difficulties in taste, svmllowing, digest ion and absorption. Discomfort following eating may cause the patient to refuse to eat, altl1ough he may be hungry.

Anorexia may be related to side effects of chemothera­ peutic drugs and radiation therapy both of l;·lhich can cause nausea, vomiting, and alterations in taste (Holland,

1977) 0: 26

The influence of therapy-related nausea upon the

acceptance of particular foods is illustrated by an

experiment performed in Seattle on three groups of

children. One group to whom the ice cream was offered received no chemotherapy. A second group (control) received chemotherapy and was not offered ice cream before treatmento A third group received chemotherapy after eating the ice cream. The latter group was the most likely to refuse it when offered again (Bernstein,

1978) ~~ 'L

Anorexia may be related to the cancer. The effect of a tumor upon loss of appetite is most evident prior to diagnosis, before therapeutic and psychological factors become significanto Anorexia is not related in any way to the size of tumor or type of cancer, but does increase in severity and frequency in more advanced stages of the disease (Johnson, 1979)" l ! Shils (1979;, ,has observed that loss of appetite and 'tveight .loss in cancer patients have frequently been due to causes other than intestinal obstruction, endocrine abnormalities, or the presence of pathogenic organisms.

These observations have led him to the belief that the tumor can produce changes in the patient's metabolism, such as the usage of pathways that demand more energy and nutrients. \ \ 27 '

The hypothalamus is the primary center of the

brain for regulation of food intake. The relationship

between anorexia in cancer patients and the hypothalamic

centers ("feeding and satiety")" is not fully understood.

\ ', Q~ Wys (1977) has suggested that the stress of the disease

may stimulate the release of substances that suppress

feeding behavior.

Another component of anorexia in the cancer patient

is a change in taste sensation. Cancer and cancer

treatment seem to produce unsatisfactory changes in

taste thresholdso The most significant change appears

to be the lower threshold for bitter tasting foods,

which is probably responsible for the aversion to the

taste of meat and other high protein foods frequently

observed in cancer patients (De Wys, 1977).,'

Nutritional Therapy for the Cancer Patient

Previous sections have shmvn how both cancer and

cancer treatment can lower the nutritional status of

the cancer patient. This lowered nutritional status

can affect the child's growth and development (physical

as well as mental), immunity system, and response to

therapy. This section will deal with the rationale

of nutritional therapy and the different modes of nutri-

tional therapyo 28

·Rationale of Nutritional· Therapy_. The question, "Does nutritional su:rport :rose a hazard to the patient?" must be answered. Results of studies done in the 1960's through the mid 1970's with tube forced feedings in patients -vzith advanced cancer are contradictory. Animal studies during this

period are also contradictory. Dr. Maurice Shils~ the foremost authority on nutrition and cancer, writing in 1976, stated:

... I am firmly convinced that this feeding tech­ nique (total parenteral nutrition) is not an area of concern in the care of cancer patients. This is based on experierice gained in feeding more than 500 patients with TPN. I recognize the impossibil­ ity of drawing a firm conclusion in this area t.;rith..,. out large scaled randomized studies (which are themselves impossible to conduct in untreated pa-. tients). While such observations are reassuring, this que~tion remains academic for most patients. With the advent of more effective chemotherapeutic drugs, new and improved types of radiation therapy and immunotherapy, any or all of which may be com.­ bined with surgery, physicians are much more aggres­ sive than they have ever before been in the treat..-. ment of cancer. It is in these patients undergoing various modalities of therapy that efforts should be made to improve and maintain nutritional status (Sh i 1 s , l 9 7 6) •

In late 1976, the first conference v7as held to discuss the role of nutritional therapy in the treatmerit of cancer. Prominent cancer specialists from the nationts leading cancer centers were featured speakers. The proceedings of this conference can tie found in Cancer 29

Research, volume 37, July, 1977. Subjects'discussed included; the general affects of cancer on nutritional status; the nutritional consequences of impaired organ functions; the nutritional consequences of therapy; and the nutritional management of cancer patients. In the discussion of the nutritional management of the cancer patient, Dr. Dudrick (1977) revie,.ved the current techniques of administering total parenteral nutrition to adult and pediatric cancer patients and offered dramatic evidence of the efficacy of nutritional support in reducing mortality at Herman and M.D. Anderson Hospitals. Dr. Copeland (1977) also presented impressiye data on survival benefits of total parenteral nutrition. Another study by Copeland, Dudrick et_ al, not specifi­ cally referred to at the conference, had equally favorable results (Copeland, 1975)'. This experiment involved 55 cachectic patients, who, without intravenous nutritional support, were considered either untreatable or extremely poor risks.for any form of oncologic therapy. As a result of intravenous nutritional support the patients' tolerance to chemotherapy and its toxic side effects was improved. Immunocompetence and quality of life were also improved. The Conference on Nutrition and Cancer Therapy concluded that nutritional support can make the difference 30

between success and failure of therapy in many situations, particularly in child patients. To quote the last sentence of the summation:

It is hoped that this conference will awaken the responsibility of physicians, scientists, and policy makers to address priorities in a way that will provide nutritional support to patients in all hospitals and not only through the very special­ ized clinics where the problem is recognized and addressed today (Gori, 19 77) . )

In July,-1978, at the ~~erican Cancer Society and

National Cancer Institute's National. Conference on Nutri- tion and Cancer, the importance of directing attention to initiating nutritional treatment as a prophylactic regimen to help prepare a patient for therapy and to '{·, maintain his health was discussed (Donaldson, 1979).

The importance of nutritional surveillance of cancer out-patients was also discussed (Dwyer, 1979).

Maurice Shils at the Symposium on Applied Nutrition in Clinical Nedicine in 1979 gave a thorough report on cancer and nutrition. He stated that malnutrition is not an oligatory resp?nse of the host to cancer; it is relatively uncomi-non to find a patient with cancer whose nutritional status cannot be either maintained or improved by means of appropriate nutritional modalities.

He concluded with a very important statement regarding the rationale of nutritional therapy: 31

Nutritional status, tumor growth, and antitumor treatment are intimately related. Many of the chemo­ therapeutic agents have optimal activity against cells that are in the process of division ..... improved nutrition may be a therapeutically useful occurrence since actively dividing tumor cells are more likely to be more sensitive to radiation and chemotherapy than are slowly dividing cells

(Shils, 19 79) 0 Children's Hospital of Los Angeles, California, influenced by the findings of Dudrick, Copeland and Van Eys, conducted a study on the role of a nutritional team in the management of the child with cancer. The team, consisting of a physician, nutritionist, and nurse, gave advice in the management of 51 pediatric patients. The study concluded that the personnel function- edmore effectively as a team than separately, that the team has a role in the overall management of the child \.vith cancer, and that it would be advantageous for such a team to function in the early management of all children with cancer. The long range benefits from this approach would be effective management of known nutritional problems, the prediction of preventable problems, and the recognition of the vital role of nutritional education for all personnel involved in

1" l) the management of children with cancer (Cohen, 1978)~ Children's Hospital was conducting a study in 1980-81 on nutritional support during oncological therapy. 32

The Diet, Nutrition and Cancer Program of the National

Cancer Institute has continued to address the problems

raised at these conferences. Several handbooks for

cancer patients have been written or disemminated by

the National Cancer Institute; two have been specifically written for children with cancer.

Nutrition and the Pediatric Cancer Patient

At M.D. Anderson Hospital, nutrition is an important

factor in the pediatric cancer division. Parents are

instructed on how to deal with their child•s eating habits. During periods of extreme nausea, the patient may receive an antiemetic drug. Since food aversion

is a learned behavior, favorite foods are discouraged during treatment, whereas nonaromatic, cold foods are encouraged. During the period between treatments, aggressive nutritional build-up is encouraged. Par­ ents are instructed in methods of increasing calories as well as protein in the diet.

Supplements are used extensively at M.D. Anderson

Hospital. Children are involved in taste-tests of milkshake-type drinks. Participation of the child in his own nutritional care plan is encouraged. A

"mother's kitchen" is located in the hospital so that the children may have "at home" favorites while in the hospital. Nutritious snacking is also encouraged. 33

Nutritional assessment, which includes anthropo- metric measurements as well as biochemical values, is routinely doneo When all means of oral nutritional support fail, intravenous hyperalimentation (IVH)

/l \ may be used (Wollard, 1979) 0' 1 Specific Pamphl'ets Written for the ·cancer Pa.ti.ent. The National Cancer Institute has sponsored three specific pamphlets for the cancer patient, The first is Feeding _the Sick Child by Mikie Sherman (NIH 79- ) 795)~ The contents of this pamphlet are divided into five sectionso The first deals with feeding children who are finicky eaters; the second, with special prob- lems :of feeding children with cancer; and the third, with general nutrition guidelines, The fourth section contains recipes chosen for both child appeal and nutri­ tional value; and the fifth section, has a list of child-oriented cookbookso Much of the information came from Sto Jude Children's Research Hospital and Hemorial Sloan-Kettering Cancer Centerc The second pamphlet is Eating Hints--Recipes and Tips for Better Nutrition During Cancer Therapy (NIH 80-2079)0 The booklet was written by members of the Yale-New Haven Medical Centero The booklet was based on intervie1:vs with 99 cancer patients living in New Haven, Connecticut. Despite the different kinds 34

of cancers and the different treatments, eating problems

experienced by these 99 patients fell into five general

categories--nausea and vomiting, loss of appetite, mouth soreness and dryness, tired feeling, and intestinal

upset. The booklet gives ideas on how to overcome

the above problems; recipes are also included.·

The third pamphlet is Diet and Nutrition--a R~o_21rce ID for Parents of Children with Cancer (NIH 80-2038).'

This handbook was developed by the Diet, Nutrition,

and Cancer Program (DNCP) of the National Cancer Institute.

This program was mandated by Congress in 1974 to collect, analyze, and disseminate information that may be useful in the prevention, diagnosis, and treatment of cancer.

The Candlelighters, an organization founded by and for the parents of children with cancer, developed a questionnaire. Suggestions obtained as a result of the study formed a large part of the handbook. Sections of the booklet include: the importance of nutrition to the child with cancer; nutrients, their function and sources; digestion, absorption and metabolism; side effects of cancer and cancer treatment; radiation treatment; drug treatment; surgery; coping with side effects of cancer and cancer treatment (nausea, vomiting, weight gain or loss, diarrhea, constipation, dehydration, mouth sores, "mouth blindness,!' dry mouth, and tooth 35

decay); encouraging your child to eat; emotional influences on your child's appetite; making foods more nutritious and appealing; increasing protein

and calories; nutritious snacks; special dietary modifica~ tions--including special diets such as clear liquid diet, full liquid diet, soft diet, low residue diet, lactose restricted diet, gluten restricted diet, high fiber diet; commercial food supplements and liquid diets; parenteral and enteral nutrition; and a glossary of terms used in the handbook. Since 1978 a number of other pamphlets have been published by various sources. Child:ren's Hospital at Stanford has published Dietary Tips for Possible Nutritioh Related Problems in the Pediatric Cancer Patient; Good Samaritan Hospital, Los Angeles, has published Nutrition During and After Radiation Therapy and Chemotherapy; Fred Hutchinson Cancer Research Center, Hashi.ngton, has published a Guide to Good Nutri­ tion During and After Chemotherapy and Radiation; the names of many other hospitals could be added to the list. The American Cancer Society has published a booklet, and local chapters are coming out with their own information leaflets. Another source of . information comes from the drug companies who make nutritional supplements, and are supplieis for parenteral and enteral feedings. 36

Nutrition Misinformation. Patients can develop nutritional deficiencies and malnutrition, not only from the side effects of treatment and cancer itself, but also by follo~7 ing a dietary regimen in which they avoid so called "carcino­ genic" foods or·by consuming large amounts of foods alleged to he "healthful." Nutritional information, and sometimes misinformation, is abundantly available in many popular magazines and books. The cancer patient and his family can be very confused over the abundance of information, and perhaps misinformation, that exists on the relationship of nutritibn to cancer. It is very important to combat misinformation, and guide the patient in proper nutritional care (Wollard, 1979) .)"'-

Confusion and Concern Over Nutrition

There is more "quackery" in the field of nutrition than in almost any other a·rea of science, according to Jere Goyan; former commissioner of the U.S. Food and Drug Administration. Goyan feels that the fraud encompasses natural food regimens, laetrile therapy, and other cancer treatments. One reason he gives for the stronghold of "quackery" on the Aruerican public is the confusing and contradictory nutrition reports reaching the public; the case of cholesterol is an example of one (Puzo, 1981). \ 37

Lewis Barness (J980) of the Department of Pediatrics

at the University of South Florida feels the public's

confusion is due to the rampant nutritional advice which can he found in specialty I)lagazines, health food

stores, weight reduction institutes, etc. Because hard data, easily veri.fiahle, is difficult to obtain, maxim~l tolerance for most vitamins and minerals is

largely unknown. This great void has allowed food faddists, drug manufacturers, and some highly motivated, charismatic individuals to make false claims, such as the use of vitamins and minerals in the treatment of poorly understood diseases.

;_;Yotmg and Richardson (1979} feel that the confusion over nutrition has been created by linking diet with h1~an cancer development based on epidemiological and animal studies. The data base from these studies is still ~imited, and it is difficult to apply this information in the human nutritional context. These data, rather than being used only as a basis for further research, have fueled inappropriate or fallacious advice to the public. Such nutrition advice can be found almost daily in newspapers, magazines, books, and television; sensational interpretations, shock tactics, and descriptions of miracle cures and revolu­ tionary breakthroughs are often employed. Unfortunately 3S

the food industry is not free of blarrie; products are frequently promoted as, "organically grown,'' "free of chemicals," "all natural," and so forth. On the other hand, the health food industry has, on the oasis of these incomplete animal and human studies, promoted fiber, Vitamin C, Vitamin A, Vitamin E, and selenium for the prevention of cancer. The net effect of these various information sources may be an irrational view of nutrition in relation to health. Additional research . is needed before the public can be given conclusive information. The public has been given a lot of incorrect nutritional advice which has caused tremendous confusion in the minds of individuals. There is an urgent need for sound and effective nutrition education for both the layman and the health professional. "Anti-cancer" diets can be easily obtained in books sold at health food stores. The Laetrile Metabolic

Program Orientation Handhook--Notv' That You Ha"fe Cancer {7;,\..\\ (Bradford, 1979) 'oescribes an entire dief and way of life regimen; it includes case histories. Ohe Answer ~;<,/ to Cancer (Kelley, 1969) is another book of this type. Kelly, a dentist who holds a Master of Science degree, believes cancer can be cured through nutritional methodso He has established the Kelley Research Foundation, and his work is promoted by the Cancer Control Society, \ 39

Los Angeles. In Recipes for a Cancer-Free Life Style (Kroeger, 1978)>,l- a recipe for homemade laetrile is given, including where to obtain the necessary ingredients. Other titles which can be found include \.Jorld Without Cancer, Cancer Cure, Freedom from Cancer, and Cancer Winner. Darby (1979)j feels that the concern over food, nutrition and cancer, whether considered from the therapeu- tic or preventive viewpoint, is an expression of the age old interest in the medical use of food. Both the fatally ill and the healthy seek help from the mysterious remedies of folk medicine and from "so-called" health foods. In addition, the public is anxious about the uncertainties of living and has become overly concerned about their bodies and health. 'l't Schmale (1979) states that the cancer patient is looking for a way to participate directly in his treatment to assure his recovery. Schmale feels this view may help explain why some of the old remedies and "quack" treatments l.ike laetrile have their supporters. The fact that an individual will pursue a substance that is illegal and expensive, and may make an extreme effort to obtain it, may be a measure of the individual's determination, independence, and motivation to fight the cancer. 40

Does· a· Ra·t·ional Anti-Ganc·er Diet Exist?

The public wants to know if there is anything that can be done to prevent cancero The cancer patient wants to kno~v if there is ·anything he can do to increase his chances of survival. As mentioned earlier, a well-balanced diet with adequate protein and calories will benefit the cancer patiento Parenteral and enteral nutrition can be applied to those who are unable to eat properlyo Food supplements can also be used. But the question still exists as to whether there is anything else that can be done that is not outright "quackery." Germann (1977) contends that although scientific studies do not give clear-cut answers, the studies do show direction for a cautious approach to reducing cancer risk through dieto He stresses eating less, lowering fat and cholesterol, using more cereals and alternative sources of protein, eating more fresh fruit and vegetables, reducing the intake of foods containing nitrates and sugar, and drinking less coffee, tea and soft drinkso

At the American Cancer Society's Conference on Nutrition and its Relationship to Cancer, leading cancer authorities agreed that, although direct proof is lacking, scientific studies indicate that it would 41 be prudent to reduce the intake of fats, increase fiber content, and lose excessive weight as measures to prevent cancer (A~erican Cancer Society, 1979). Hegsted at the American Cancer Society and the National Cancer Institute ,_s National Conference on Nutrition and Cancer stated that the optimal diet to prevent or delay the onset of cancer is still unknown. Definition of the parameters of such a diet should be the goal for the next decade. What is known about diet and cancer is that the same dietary recommendations as stated in the "U.S. Dietary Goals, 11 based on pre- sent knowledge of obesity, hypertension, diabetes and coronary heart disease, may reduce susceptability to various kinds of cancer. These recommendations include lowering total food intake, lowering intake of fat (especially saturated fat), lowering intake of cholesterol, sugar, and salt, and increasing consump- tion of fruits, vegetables, and cereal based products

~c~ {) (Hegsted, 1979) .:-

The Public and Nu t'r it ion

The general population is becoming interested in making diet changes for health and nutrition related reasons. Nearly two-thirds (64%) of all households surveyed by the U.S. D. A.'s Economics and Statistics Service (ESS) reported :making such changes. This survey was conducted before the U.S.D.A. 's Dietary Guidelines \ ( were published in February, 1980-;cc:+lrhe following patterns . i / emerged from the study: (1) fifteen to twenty percent used less foods high in fat and cholesterol; (2) twenty- five percent increased consumption of fruits and vegetables; (3) twenty-two percent reduced salt intake; (4) thirty-three percent reported using less sugar;

(5) twelve percent reduced nitrate intake; (6) five percent reduced saccharin intake; (7) ten percent reduced intake of preservatives, artificial coloring, and artificial flavoringo When asked about sources of nutrition information, more than half cited health professionals; and one-third cited magazines, newspapers, and television (Community Nutrition Institute, 1980). A survey conducted in 1978 revealed that the general public, including college graduates, knmvs much less about nutrition than they think they do. Much of what they do know is misinformation from advertisements~ magazine articles, and best selling books (Mayer,r'ol

1980) 0 White (1976) also stated that the public actually knows very little about legitimate nutritional practices" He claims that malnutrition and poor food habits are found throughout all educational groupsa 43

In a study by Verineersch and Swenerton (1980) it was found that low income ·eonsumers were especially vulnerable to misinterpretation of nutrition claims made in adver­ tising. Those who had a positive attitude coupled with a low level of education were the 1nost vulnerable. Higher education seemed to decrease this vulnerability. A public that is interested in nutrition but lacks knowledge, needs direction from bona fide health

I \ 1 professionals (_Mayer, 1981) ';; - Otherwise this void may be filled by the abundant nutrition advice which can be found almost ever)T\vhere and .-much of which is

<777 misinfonnation (Young, 1979) • . Chapter 3

METHODOLOGY

Procedure

A question~aire (Appendix) was developed to determine what nutrition information parents have and what nutrition information parents want in regards to their child's cancer. The questionnaire was developed with input from the hematology/oncology department of Children's Hospital, Los Angeles, including staff doctors, a nutritionist, and the psychosocial department. Approval for this study was obtained from the institution's Committee on Clinical Investigations and Publicationso

&1 informed consent form (Appendix), signed by the parent, explained the purpose, potential benefits, confidentiality, and investigational plan of the studyo The researcher was also present at the time of the survey to answer additional questionso A Spanish version of the consent form and question­ naire were availableo A Spanish speaking social worker was present to answer questions. ·The researcher could also speak some Spanisho

44 Dat·a. Co"llect'ion

The questionnaire was handed out to all consenting parents bringing their children to the hematology/oncology clinic at Children's Hospital, Los Angeles, California. This process continued for three and one-half weeks at which time one hundred fully completed questionnaires had been obtained. The questionnaires were completed at the clinic and returned to the researcher.

Analysis of Data

The data obtained from the questionnaires were tab­ ulated, for the most part, utilizing a SPSS computer program at the CSUN Computer Center. A few of the questions were open-ended, and were analyzed by hand. The data was first analyzed by response percentages. Associations were studied on the basis of the parent's educational level and ethnic group, the child's diagnosis, status of the disease, type of treatment, and length of time since diagnosis. . Chapter 4

RESL~TS AND DISCUSSION

Setting of the Study

Children's.Hospital of Los Angeles was selected for this study because of its large population (700) of pediatric cancer patients. In addition, the hospital was knovm to be supportive of research on the rela­ tionship between nutrition and cancer. The hospital had previously run a study on the role of a nutritional team in the management of the child with cancer (Cohen, 1978) and was currently involved in a study on nutri­ tional support during oncological therapy. The children that came to the out-patient oncology clinic were all ambulatory, and in "reasonably" good health. The majority had spent some time as in-patients at the time of initial diagnosis. The children could be divided.into three general categories: (1) those coming several times a week. who were in the beginning stages of treatment; (2) those on maintenance therapy, visiting the clinic once monthly or less often for checkups and treatment; (3) those off all medication, coming only for periodic check-ups.

46 47

The out-r>atient clinic was Ii..eld each 11onday, Wednes­ day, and Friday. Several doctors were in attenderice on each clinic day. A staff psychologist was usually present, as were several members of the psychosocial team. The staff dietitian/nutritionist was not present

in the clinic, ~ut was available to in-patients. The researcher asked each adult, while they were waiting in the examining room for their child to see the doctor, if they would like to participate in a nutrition survey. The following responses were observed; (1) the majority of parents were e·ager to participate; (2) some had hesitancy, but agreed to participate; (3) a limited number (152 were hostile and refused to participat.e. Those who agreed to participate were first asked to sign an informed consent form; the questionnaire was then given to them; the researcher returned within fifteen minutes to pick up the question­ naire and answer any questions. A number of patients expressed interest in wanting to know the results of the survey; many asked where they could obtain addi- tional nutrition information. During a three and one half week period one hundred questionnaires were completed at the out-patient, hematology/oncology clinic. Parents of in-patients were not studied. Of the one hundred questionnaires, eighty-six 48

were completed in English;. fourteen were completed in Spanish. Half of the Hispanics completed the question­ naire in English. Many of those completing the question- naire in Spanish required assistance from the researcher or Spanish speaking social worker.

Backgronnd of the Respondent Resp9n·dent 's Relationship to Pat·ieht. The majority of the respondents were the patients' mothers. The distribution 1:-vas as follows: Mother 79% Father 12% Other 9% The "Other" group included grandparents, relatives, and four patients who ..,.;rere over the. age of eighteen and res­ ponded themselves. Rf:>::..§_Eond.ent' s Education. This question was optional; four people chose not to ans1:.ver. Forty-four percent of the respondents had completed high school. The ca·t.egories and percentages were as follows:

6 years or less of education 9"''Ia 9 years of education 8% 12 vears of education l'J.4% " 2 years college education 20% 4 years college education 10% post graduate eduation 5% no ans"'rer L,.% 49

Ethni·c cr·oup. The .majority of the respondents were Caucasian; the second largest group was Hispanic. The

distribution was as follo~s: Caucasian 56% Hispanic 29% Black 9% Other 6% The "Other" group included five Asians and one .<\merican Indiano.

Respondent's Present rn·terest ih Nutrition 0 Ninety­ five percent of the respondents were currently interested in nutrition, of which 50% were very interested. The categories and percentages· were as follo\.v's: Very interested 50% Interested 45% Uninterested 1% Don't know 4% Background_ of the Patient Child's Age_o The children's ages ranged from infants to those old enough to bring themselves to the clinic. The distribution was as follows: Under one year 2% 1 to 3 years 26% 4 to 6 years 25% 7 to 10 years 21% 11 to 14 years 13% 15 years and over 13% 50

Child' s· Dia·ghosis. Cancers typical of childhood had been diagnosed. The majority of the· children (57%) had acute lymphocytic leukemia. The diagnosis distribution v1as as follo~is: acute lymphocytic leukemia 57% other form of leukemia 7% l~h~a n sarcoma 5% Wilms'~ Tumor 6% Neuroblastoma 8% brain tumor 5% other :malignant tumor 5%

Length of Time Sine~ Diagno·sis. The largest single proportion of children (41%) had been diagnosed for their disease within the past twelve months. The distribution was as follows: Up to 12 months 41% 13 to 36 months 34% 37 to 60 months 10% over 5 years 13% (no answer) 2% EVidertce of Disease. The majority of the children (74%) were in remission, that is there was no evidence of disease. Of those in remission~ the majority were taking chemotherapy treatments; others were not on any medication. Of those not in remission (17%), some children were in the beginning stage~ of treatment (having not yet achieved a remiss ion), \vhile others had relapsed. Nine percent were unsure of their child's status, which most likely meant they were waiting for test results to determine their child's status. The distribution was as follows: in remission 74% not in remission 17% unsure 9%

Ther~EY Program a The majority of the children (68%) had undergone radiation therapyo This form of therapy was used for roost of the cancer diagnoses. Children under one year often were not given radiation therapy. The majority of the children (72%) were presently on a chemotherapy program. This group included those on intensive doses of drugs in order to initiate a remission, and those on maintenance doses as a prophylactic measure; for those children with leukemia this included monthly injections at the hospital, and daily medication at home. Twenty-eight percent 'tvere no longer on any chemotherapyo The use of the word "cured" may be premature for this group, but their prognosis was good. The sample was representative of that which is described in the literature, including the types of diagnoses, percentage in remission, ages of the children, and types of treatment (NIH 79-1566)0 Slightly more leukemias were seen than those described by Van Eys (1978) because these children visited the clinic more 52 frequently than those with solid tumors.

Respondents' Interest in N'ut.ritiori

Interest Since Diagnosis The respondents' interest in nutrition was high. As previously stated, 95% were interested in nutrition. Sixty-six percent had increased their interest in nutrition since their child was diagnosed, 29% had been interested prior to their child's diagnosis, 4% were unsure about their feelings towards nutrition, and 1% was uninterested. This interest, on the part of the respondents, was much higher than that reported for the general population (CNI Weekly Report, 1980). Anti-·Cancer Diets A question, based on the proliferation of unorthodox cancer treatments, asked if they had tried any of the various diets that claimed to cure or help cure cancer. A list of such diets was provided, including megavitamin therapy, low protein, Almond Diet, vegetarian, low fiber, fasting or cleansing diet, high fiber, laetrile, and a space to write in any other diet. Also included on the list was one legitimate diet-- high protein/high calorie. The high protein/high calorie diet received the greatest response (9%). The researcher and the staff had expected that a number of the respon­ dents v10uld have t.ried some of the other diets, since 53

they were aware of some non-traditional remedies being tried, such as laetrile, snake powder, carrot/celery tonics, etc. Possible reasons for the low response may have been: (1) fear that their name would be associated with the questionnaire, due to the signed consent form; (2) embarrassment at trying an unproven method; or (3) lack of interest in unproven methods since the majority of children were responding well to conventional therapyo Nutrition as an Avenue to Involvement· in Theri!E.Y· A question was designedto seE; if the respondents' interest in nutrition_could provide an access to greater involvement by them in their child's therapy program.

Schmale (1979) had described hm.r· cancer patients needed, and were seeking, an avenue to participate directly in their treatmento Most respondents (62%) stated that information regarding their child's nutritional needs would increase their feeling of involvement in their child's treatment program. The percentage increased if the child was on a chemotherapy program; seventy- seven percent of those patients on a chemotherapy program stated they would feel more involved. Twenty-· one percent felt it would have no effect. Seventeen percent did not know what effect nutrition information would have on their feeling of involvement. This latter 54 p •

group comprised 34% of the Hispanic respondents compared to 11% of the Caucasians (Table l)o

Nutrition Informationo The literature indicated that the majority of the general population had more interest than knowledge about nutrition (Wftite, 1976; Mayer, 1980)o A question was designed to see if the respondents felt they had received adequate knowledge regarding nutrition as it related to their child's illness. On.ly 28% reported hav-ing adequate knowledge. The results were as follows: adequate information 28% limited information 31% no information 41%

Sources of Nutrition Information Those respondents who had received nutrition informa- tion received this information mainly from the doctor (30%). Other sources of information were friends, books, specific booklets, dietitian, social worker, relatives and health food store. The amount of information associated with the respondents lev·el of education; those with a higher level of education claimed to have more nutrition inforruationo Ethnic group i.vas not a factor, Table 1

Nutrition Information and Involvement

C~·osstabulation by Ethnic Group

Caucasian Black Hispanic Other Total N = 56 N = 9 N = 29 N = 6 N = 100 (%) (%) (%) 00 ('7o)

How would information about your child's nutritional needs affect your feeling of involvement in your child's treatment?

1. feel more involved 68 78 lt1 84 62 2. no effect 21 11 24 16 21

3. don't know 11 11 35 0 17

t.n l.ll 56

De sired Sources ·of Nutriti·on Ihfortn:at ion

Ninety-thre~ percent of the respondents stated that they wanted to obtain nutrition information. wnen asked to check all of the sources from which they would like to be able to obtain nutrition information, they listed the following: doctor 55% dietitian 47% specific booklet 45% books 28% parent groups 18% social worker 13% Further analysis showed that those respondents with t-v10 or more years of college more frequently chose doctor, specific booklet, and dietitian than those with less education. The respondents who spoke only Spanish most often chose the social worker. This may have been due to the fact that there was a Spanish speaking social worker on the staff. However, there was also a Spanish speaking docto.r available. Hany of the respondencs may have been m1familiar with the role of a dietitian since there ~vas not one available at the out-patient clinic. 57

Cancer and Diet

Cancer QUackery The literature indicated that more "quackery" existed in the field of nutrition than almost any other area of science (Goyan, 1981). Barness (1980) felt that the public was confused about what i.s legitimate nutrition advice due to the "rampant" advice which could be found everywhereo Young (1979) blamed the nhealth food" industry for extrapolating information from limited animal and human population studies" The respondents expressed this same confusion and concern; 86% responded that they would like information to help determine which nutrition information \vas sound and which might be quackeryo

Diet as a Gause of Cahcer The "health food" industry has indicted diet as a causative factor in the development of cancer; Young (1979) has claimed that the data base is still too limited to make such claims. In response to the question, 0 Do you feel the cause of cancer may be related to diet? The results wer~ as follows: 58

alwavs.I 0% frequently 6% occasionally 22% never 15% don't. know 55%

no answer 2a'to ·

The responses to this question and their interrela­ tionships were interesting. The media has constantly indicated certain foods as causing cancer, yet none of the respondents said that the cause of cancer was nalways" related to diet. The majority of the respondents (55%) reflected thi confusion described in the literature (Young, 1979) an-d chose "don't knOi:.;." Further analysis revealed some interesting inter- relationships: (1) The child's status of the disease (remission) was a factor. Ninety-three percent of the respondents who answered that diet was "never" the cause of cancer, had children who were in remission (Table 2). (2) The respondent's education level vvas also a factor. Those i.vith more education were more aware of the associa- t:Lon between diet and some types of cancers. Those tvith at least. two years of college answered "occasionally" most often (Table 3). (3) The respondent's ethnic group also played a role in the response to this question. The Hispanics associated food with the cause of cancer less often than any other ethnic group (Table 4). Table 2

Diet and Cancer

Crosstabulation by Status of the Dise~se

Child in Child not Unsure of remission in remission child's status total N = 72 N = 17 N = 9 N = 98

(%) (%) (iC>) (%)

Do you feel the cause of cancer may be related to diet?

1. al~r1ays 0 0 0 0 2. frequently 3 18 11 6 3. occasionally 26 12 11 22 4. never 19 6 0 15 5. don't know 52 64 78 55

U1 1../,) . Table 3 Diet and Cancer Crosstabulation by Education

- 9 yrs 12 yrs 2 yrs 4 or total or college more yrs less college N :;:; 17 N =: 42 N :::;. 20 .. N = 15 N = 98

(%) (%) (%) (%) (%)

Do you feel the cause of cancer may be related to diet?

1. always 0 0 0 0 0 2. frequently 0 7 10 5 6

3. occasionally 6 12 50 40 22

4. never 18 7 20 20 15 5. don't know 76 74 20 35 55

0'1 0 Table 4 Diet and Cancer Crosstabulation by Ethnic Group

Caucasian Black Hispanic Other Total N = 56 N = 9 N = 29. N = 6 N = 98

(%) (%) (%) (%) (%}

Do you feel the cause of cancer may be related to diet?

1. always 0 0 0 0 Q 2. frequently 7 11 0 17 6 3. occasionally 27 22 11 33 22 4. never 13 11 24 17 15 5. don't know 53 56 68 33 55

....0'1 62

The Effect of Proper Diet In answer to a question on how proper diet will affect your child, the responses were as follows: it will have no effect 9% the body will recover faster 43% the cancer will spread 0% don ' t know 4 7% no answer l a/o,, Further analysis showed that as the educational level increased, the more frequent choice was "the body will recover faster," rather than r'don't knmv." The literature had indicated (Shils, 1980) that the greatest fear on the part of physicians in regard to diet and supple- mentation was increased growth of the cancer. Apparently the respondents did not share this fear.

Avoidance of Foods In response to the question, "Do you try to avoid

serving foods that contain any of the following 0 ••••• o.o 0.?" 70% of the respondents avoided some foods. The foods avoided, listed by the percentage of those respondents av1..d. 1.ng tl-:Liem were : . 63

high sugar content 55% saccharin 43% artificial coloring 40% high fat content 40% artificial flavoring 35% nitrates 26% cholesterol 25% other 12%

Further analysis was made on the basis of the respondent 1 s education, ethnic group, and the child's status of the disease. More foods were avoided as the respondents' level of education increased. The

percentage of those avoiding fqods went from L'"9% of those with nine years of education to 95% of those with 4 or more years of college.

P.n ethnic breakdown showed the following percentages of each group avoiding some foods: other 100% Caucasian 79% Black 78% Hispq_nic 45%

The Hispanics ~Jere avoiding foods less frequently than any other group. Whether or not the child 'tvas in remiss ion was not a factor in any of the responses. The foods that were avoided corresponded with the recommendations mad.~ by Germann (1977) in his book, 64

The Anti-Gancer Diet" They corresponded to some extent with the recommendations made by the American Cancer Society"

Cancer and Vi tam:ins. The literature had indicated that the "health food industry" has promoted the use of Vitamins A, C, and E for cancer prevention and treatment (YOtmg, 1979)" Forty-seven percent of the respondents gave their chil­ dren vit~in or mineral supplements. The respondents were asked to check the types of supplements their children were taking. The results were as follows: multiple vitamin 24% vitamin c 22% multiple vitamin and mineral 18% vitamin A 6% vitamin E 4%

Failure of the children to take any type of vitamin or mineral supplement was not influenced by whether the child was on or was not on chemotherapy. The respondents were asked who suggested the supplements. The results were as follows:

paren t l s sugges t"~on 43~oh doctor's suggestion 49% parent's and doctor's suggestion 8% 65

Of the 43% (20 children) who were taking the supplements on their parent's suggestion only, 40% (8 children) were not on chemotherapy. Many of the respondents

expressed a desire to give their child vitamins or minerals, but did not give them because they were not prescribed by their doctor. There was not a consensus among the doctors at the clinic as to whether the children should have any vitamin or mineral supplements. The researcher was aware of only one doctor who prescribed vitamin or mineral supplements; he suggested a standard vitamin/mineral supplement for those children whom he or the parent felt were not taking in_an adequate diet. Further analysis by ethnic group revealed that only 38% of the Hispanic group was taking vitamin or mineral pills of any type. The results were as follows: Black 78% Caucasian 63% Other 50% Hispanic 38%

Child's N'utritiohal Stat·us

Nutritional Problems Since the literature had indicated that both the cancer and the cancer treatment affected the nutrition-

I ( al status of the patient (Munro, 1977) ~":'a series of questions ~vas designed to obtain information on what specific nutritional problems the children were having 66 during active chemotherapy. The following nutritional problems were found; they are listed by the percentage of the children experiencing the problem: nausea and vomiting 66% change in taste of certain foods 58% diarrhea 56% constipation 46% dry mouth 46% mouth sores 37% Nausea and vomiting was listed more than any other problem as occurring "always" during active chemotherapy

(13% of the sample) o Further analysis showed that all of these problems were experienced by some members of every age group over the age of one o Mouth sores and nausea and vomiting were predominant in children over the age of ten. The 7 to 10 year old group experienced more change of taste in foods, dry mouth, and diarrhea than any other group; 65% of this group reported having these · problems (Table 5). Thirty-five of the forty-two children (83%) who experienced constipation had received radiation; this effect comprised 62% of all of those 'tvho received radiation. Many of these children took Vincristine which is also know~ to cause constipation (Blackburn, 1977). Table· 5 Nutritional Problems

Crosstabulation by child's age

·child's Age 1-3 4-6 7-10 11-14 15 & over Total N = 25 N = 23 N = 17 N = 12 N :::: 12 N :::: 89

(ic,J~--- (%) ----uJ- (%) (%) (%) Nutritional Problem: Mouth Sores 32 26 35 42 75 37 Dry Mouth 40 39 65 42 58 46 Taste change 48 57 71 68 50 58 Nausea/vomiting 60 57 82 67 75 66 Diarrhea 61+ 44 65 42 58 56 Constipation 60 30 53 50 42 46

0"1 -..J. 68

As indicated in the literature, despite the differ­ ent kinds of cancer and the different types of treatment, the nutritional problems of the children fell within the earlier mentioned general categories. These cate­ gories were described in a study by the Yale-New Haven Medical Center .(NIH 80-2079) and a study by the Candle­ lighters (NIH 80-2038)~

Changes ih Appetite

The majority of parents (82%) claimed that their children had some change in appet:i,.te during active chemo- therapy. The following problems listed by frequency of occurrence were found: loss of desire to eat 46% increase in appetite 35% desire to eat favorite food only 29% The parents were able to check more than one category. Twenty-eight percent of the respondents wrote in other observations in the space provided. ¥illny described how certain drugs, such as Prednisone, increased their child's appetite, while other drugs, such as Methotrexate, decreased their child's appetite. These diverse responses were possible because the children were often given: periodic pulses of certain drugs, followed, for example, by a three week resting period. These responses in 69

regard to appetite were typical of those described lo in the literature (NIH 2083}.

Changes in· Weight There was some change in the children's weight from the time of initial diagnosis to the present time. Sixty-six percent of those at proper weight at diagnosis remained at proper weight. The greatest change reported was in weight gained; this was most predominant in the acute lymphocytic group which comprised the largest segment of the sample. To a large extent, this weight gain was due to a side effect of the drug Prednisone • . Those children with solid tumors, such as sarcoma and brain tumor, experienced the greatest weight loss. This weight loss may have been due to the tumor's effect on metabolism as is described in the literature (Munro, 1977)':'

§_pecific Areas for Nutrition Edt.ic·ation

As previously mentioned 93% of the respondents wanted to receive nutrition information regarding their child's illness; 86% wanted information to distinguish between quackery and legitimate information on cancer and diet. Other areas of interest, listed by the percent- age of respondents desiring information, were: 70

"proper diet" for a child with cancer 62% lack of appetite 43% nausea and vomiting 33% weight loss 2 7% mouth sores 24% constipation 21% diarrhea 19% dry mouth 19% weight gain due to certain drugs 19% weight·gain in general 18% taste changes 18% tooth decay 18% A higher percentage of those on a chemotherapy treatment program wanted information than those who wer e no t o n a tr ea t ment prog ram • For example. 78 ~0h of those wanting information on "p~oper diet" for a child with cancer were receiving chemotherapy., Whether or not the child was in remission was not a significant variable. Chapter 5

SUMMARY, CONCLUSIONS, AND RECOMMENDATIONS

SUl:Dinary

A review of the literature provided information on the relationship between nutrition and cancero This relationship included causative factors in man's diet, development of anticancer drugs from knowledge of metabolism, effects of cancer and cancer therapy on nutritional status, and application of nutritional support, some of which may be beneficial and some ·of which may be quackeryo Since cancer is the number two cause of death in children, and because children have special nutritional needs, it was deemed important to conduct an informational survey directed towards parents of children with cancero This study was to ascertain what parental attitudes and practices were relative to nutrition,. and to find out what nutritional problems the children were experiencingo This information could be used as a basis for nutrition educationo A survey of one hundred parents of children with cancer was conducted at Children's Hospital of Los ..Angeleso The data from the questionnaire were analyzed

71 72 by a computer program. Each question was analyzed by percentage response. Further relationships were studied on the basis of the parents' education, ethnic group, cancer type, status of the disease, length of time since diagnosis, if in remission, whether presently on chemotherapy, and if radiation therapy had been used.

Concltisions

The parents' interest in nutrition (95%) was much higher than that of the general population. Many parents became interested in nutrition as a result of their child's diagnosis of cancer. This interest could be a double edged sword. If medically sound nutritional counseling was made available to the parents, the child's nutritional status could be improved, and the parents would have gained an avenue for greater involvement in their child's treatment. If nutritional counseling was not provided, parents might seek out unproven and hazardous remedies for the treatment of their child's cancer, and the child's health might suffer. The majority of the parents (63%) felt they did not have adequate knowledge about nutrition in relation to their child's illness. The literature had indicated that interest without kno·wledge can make people susceptible 73 to food faddism, and that it was the job of health professionals to fill the void so that unproven remedies would not be used. The majority of parents claimed not to be trying unproven anti-cancer diets; however, there was reason to believe that: there was not complete honesty in this regard. Many members of the staff, including the re­ searcher, were aware of non-traditional remedies being tried. The parents did indicate that they were interested in giving their children vitamin and mineral supplements, and many of them did so without the doctor's approval. The parents were confused over the role of diet in the causation of cancer, and the effect proper diet would have on their child. Although only 43% felt good diet would improve recovery, an overwhelming majority (70%) reported avoidance of foods that contained sub­ stances that had been associated 't·lith either causing or increasing the risk of cancer. According to their parents' observations, many of the children had various nutritional problems during active chemotherapy. None of the problems was unique to any age group or particular type of cancer. Many of the children had experienced some change in weight and a large majo:::.-ity (82%) had experienced changes in appetite. 74

Ninety-three percent of the parents responded that they wanted nutrition information. They were most interested in obtaining this information from the doctor (56%), dietitian (47%), and specific booklets (42%). They wanted help with the specific nutritional problems their children had as a result of the disease and its treatment; they were especially interested in the proper diet for a child with cancer. Eighty- six percent wanted information to help determine which nutrition information was sound and which was quackery. The analysis by ethnic group revealed that the Hispanics were more apt to say "don't know" than any other group in relation to questions regarding food as a cause of cancer, and the rple of diet in the body's recovery. They also answered more frequently that diet was "never" the cause of cancer, and that proper diet would have "no effect" on their child's recovery. This was reflected by their avoidance of fewer foods, and their reluctance to, on their own, give their children vitamin or mineral supplements. The analysis by educational level revealed that those with a higher education claimed to have more nutrition information, had less confusion over the role of diet in both the cause of cancer and in the body's recovery, and avoided more foods associated with the development of cancer. In conclusion, the 1980's are a ti:JD.e of tremendous interest in nutrition b.y every segment of the population. Because the science of nutrition is still new, many things are not yet known. The public has been given a lot of incorrect nutritional advice which has caused

.< tremendous confusion in the minds of the population. Those parents who have children with cancer are a very vulnerable group. Their children have a serious disease and are undergoing treatment for it, both of which can lower the child's nutritional status. The parents are bombarded almost daily. with some type of nutrition advice from newspapers, magazines, television, and well meaning friends. They want to be involved in their child's treatment. All of this underscores the urgent need for sound and effective nutrition educa- tion.

This·study indicated the need for further research in the following areas: (1) specific nutritional problems induced by treatment such as nausea, dry mouth, constipa- tion and diarrhea; (2) the effects of nutrition education on: the child's response to therapy; the use of unproven methods; the parent's feeling of involvement in the treatment. 76

In addition, ways should be found to disseminate the already existent, medically sound, information on nutrition and cancer to those who are in need of ito 77

REFERENCES CITED

Aker, Saundra and Polly Lenssen. A Guide to Good Nutrition During and After Chemotherapy and Radiation. Seattle, Washington: Health Sciences Learning Resources · Center, University of Washington, 1979.

American Cancer Society. Conference on Nutrition and Cancer Los Angeles Convention Center, California, October 9, 1979. Barness, Lewis. "Who Gives Nutrition Advice? Who Follows It? Pediatrics, 65: 1045, 11ay, 1980 .

.··) '?.··Bernstein, I.J. "Learned Taste Aversions in Children Receiving Chemotherapy." Science. 200:130-132.

""1 Bradford, Robert. The Laetrile Me·tabolic ProgYani Orienta- ;· tion Handbook--Now That You Have Cancer. California: Choice Publishers, 1979. 2",Cohen, Ian, A. Coulston, C. Ferrero, S. Siegel, and D. Hays. "The Role of the Nutritional Team in the Management of the Child with Cancer." Journal of Pediat·ric Surgery .. 13: 287-291, June, 1978. ,, c: Copeland, Edward, B. Mac Fayden, V. Lanzotti, and S. Dud- t> · rick. "Intravenous Hyperalimentation as an Adjunct to Cancer Chemotherapy." The American Jo·urna1 of Surgery, 167-173, February, 1975'.

,, \~Copeland, Edward, John Daly, and Stanley Dudrick. "Nutri- .· tion as an Adjunct to Cancer Treatment in the Adult." Cancer Research, 37: 2451-2456, July, 1977.

Darby, ~villiam. "Etiology of Nutritional Fads." Canc·er, 43: 2121-2124, May, 1979. DeVita, Vincent. Medicine for the LayTn1an-·-car1cer Treaunent. National Cancer Institute, NIH Pu-blication No. 8.0-1gu7. Bethesda, Md.: National Institutei of Health, 1980. Ci '.) ,,~ . De Wys, William. "Anorexia in Cancer Patients." Cancer Research, 37: 2354-2358, July, 1977.

"Diet Changes Linked to Nutrition Concerns." CNI 1-Jeekly Report .. 10 (47): 6, November 27, 1980, 78

Diet and Nutrition--A Resource for Parents of Children: with Cancer, National·Cancer Institute, NIH Publication No. 80-2038. Bethesda, Md.: National Institutes of Health, December, 1979. Donaldson, Sarah and Richard Lenon. "Alterations of Nutritional Status." Cancer, 43: 2036-2052, May, 1979. -.--

Dwyer, Johanna. "Dietetic Assessment of Ambulatory Cancer Patients.'.' Cancer, 43: 2077-2086, May, 1979.

~ Eating Hints--Recipes and Ti.ps for Better Nutrition DurJng 7 Cancer Treatment. National Cancer Institute, NIH Publication No. 80-2079. Bethesda, Md.: National Institutes of Health, 1980. Eiber, F.R., et al. "Sequential Evaluation of General Immune Competence in Cancer Patients." Cancer, 35: 660, 1975. ')(. Germann, Donald. The Anti-Can·cer Diet. U.S.A.: Wydeti Books, 1977. Gori, Gio. "Summation: Conference on Nutrition and Cancer Therapy." Cancer Research, 37: 2469-2471 ~ July, 1977. ~~) Hegsted, D. M. "Optimal Nutrition." Cancer, 43: 2004-2012: May, 1979. :;·Holland, Jimmy, Julia Rowland, and Marjory Plumb. "Psycho,.., logical Aspects of Anorexia in Cancer Patients." Cancer Research, 37: 2425-2428, July, 1977. / n7.z, Kelley, William. One P...nswer to Cancer. Kelley Research / Founc;lation, 1969.

Krause, H. and L. Mahan, Food Nutrition and Diet Therapy. Philadelphia: W.B. Saunders· Co., 1919:'""

Kroeger, Hanna. ~ecipes for a Cancer-Free Life St.v1e, Hanna Kroeger, 1978. ) Leukemia Society of America. Annual ReEort, 12._?3-_. New York 1974. v\ \ Mayer, Jean and Jeanne. Goldberg. "Doctors and Dietitians Work for Patient's Nutri_tional Health."· Los Angeles Times, February 5, 1981, Part VIII, Pg. 3n:- 79

Moore, Kristina. Dietary Tips for Possible· Nutrition· ReTa ... ted Problems in the Pediatric Cancer Patient. Palo Alto, California; CHildren's Hospital at Stanford, 1978. Munro, Hamish. "Tumor-Host Competition for Nutrients in the Cancer Patient." Journal of the American Diete~ tic Association, 71: 380...;384, October, 1977. \' \~Ohnuma, T. and J. F. Holland. "Nutritional Consequences of Cancer Chemotherapy." Cancer Research, 37: 2395-. 2406, July, 1977. Peterson, Barbara, and Carolyn Kellogg, eds. Current Practice in Ohcolo¢ic Nursing. Saint Louis: The C.V. Mosby Company, 197b. · '\ "'Pochedly, C.E. "Cancer in Children is Different. II sc·ien'ce. Digest, 87: 38-43, January, 1980. Progress Against Hodgkin's Disease. National Cancer Insti-. . tute, NIH Publication No" 79-172. Bethesda, Md.; National Institutes of Health, 1979. Puzo, Daniel. "Ex-Chief of FDA Cites Nutritional Field 'Quackery'." Los· A."Lgeles Times, March 12, 1981, Part VIII, page 1. Schmale, Arthur. "Psychological Aspects of Anorexia." Cancer, 43:2087-2092, May, 1979. Schrauzer, G. N., ed. Inorganic and Nutr·iti·onaT Aspe·cts of Cancer. New YorK: Plenum Press, 1973 o · • · · · Schulman, Jerome and Mary Jo Kupst. The Child with Canc·e-r-­

Clinical Approaches to Ps~choso·c·ial Care 0 Illinois: Charles C. Thomas, Publis er:, 1980. i ' \¥Sherman~ Mikie. Feeding the Sick Ch.!ld, National Cancer Institute, NIH Pu lication No. J7J-795. Bethesda., Md.: National Institutes of Health, 1979. '2., /l-- ./ Shils, Naurice. Dietary Modifi_cat ions in Dis~~se- -Cancer. Ohio: Ross Laboratories, 1978

, ed. "Nutritional Effects Induced by Cancer." --~M=-e-:rd~i-c-a..-1 Clinics of North ,_~erica. 63: 1009-1024, September, 1979. . so

, ed. Nutritional Problems in Cancer Pati·ents. ----~N~u-t~-r~i~t~ion in Disease Series. Ohio: Ross Labora- tories, 1976. Shimkin, l1.B. Science and Cancer, National Cancer Institute, NIH Publication No. 80-568, Beth~~da, Md.: National · Institutes of Health, 1980. Theologides, Athanasios. "Anorexia-Producing Intermediary­ Metabolites." American Journal of Clinical Nutrition, 29: 552-558, 1976. .

t~ Van Eys, Jan. "Nutritional Therapy in Children with Cancer." Cancer Research, 37: 2457.-.2461, July, 1977. Vermeersch, Joyce and Helene Swenerton. "Interpretations of Nutrition Clabms in Food Advertisements by Low Income Consumers." Journal of Nutrition Educat'ion, 12 (1): 19-25j 1980. 't.fuat You Need to Know About Cancer, National Cancer Insti­ tute, NIH Publication No. 79-1566, Bethesda, Md.: National Institutes of Health, !979. \.Jhat You Need to Know About Cancers of the· Brain and Spinal Cora, National Cancer Institute, NIH Publication No. 79-1558, Bethesda, Md.: National Institutes of Health, 1979.

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/, l"• ::\:What You need to Know About tVilm' s Tumor, National Cancer Institute, NIH Publication No. 80-1570. Bethesda, Md.: National Institutes of Health, 1980.

Williams, Susan. Nutrition Duri~nd After Radiation Ther':!l?.Y and Chemotherapy. Los Angeles, California: The Hospital of the Good Samaritan, 1978. ... ·.~ 8l

Winick, Myron, ed. Nutrition and Cancer. New York; John Hiley and Sons, 1977.

·:.; l Wollard, Joy, ed. · Nutritional Hanagement of the Cancer Patient_. New York: Raven Press, 1979. Young, Vernon and David Richardson. "Nutrients, Vitamins and Minerals in Cancer Prevention." Cancer, 43: 2125-2136, May, 1979. 82

APPENDIX

QUESTIONNAIRE

Please complete the following questions to the best of your ability.. The questions refer to you and the child you have brought for treatment today. Place a check or write in the requested information in the space provided. Give only one answer to each question, unless it states, "Check all that apply."· All results will be CONFIDENTIAL.

(Data are given in response percentage; N-100) QUESTIONS 1-5 refer to the person completing the survey.

1. What is your age group? 16 1) 18-24 0 4) 55-64 4I 2) 25-34 ~1 5) 65 and over ·.42 3) 35-54 2. What is your relationship to the patient? 79 1) mother 1 4) grandfather -rr 2) father ~ 5) friend 1 3) grandmother ·~ 6) child over 18 years · 3 7) other; please describe 3. Which group best describes your education: (optional) 9 1) 6 years or less · 20 4) 2 years college --g 2) 9 years · 10 5) 4 years college 44 3) 12 years ~ 6) post graduate work (4 no answer) 4. Which group best describes your ethnic background? 9 1) Black 56 4) Caucasian 29 2) Hispanic · 2 5) Other; please describe. ---"Zi' 3) As ian 5. How would you rate your present interest in nutrition? 50 1) very interested 45 2) . interested ----1 3) Lminterested --z; 4) don't know Page 2 83

The following questions refer to the- ·child you have · brought to see the doctor today. 6. He/she is how old? 2 1). under 1 year 21 4) 7-10 years -'10" 2) 1-3 years · -~ 5) 11-14 years ~ 3) 4-6 years 13 6) 15 or over

7. He/she has been diagnosed as having: ~7 1) acute lymphocytic leukemia ~ 2) other form of leukemia --=r- 3) lymphoma ~ 4) sarcoma """"0 5) vJilms I Tumor ~ 6) neuroblastoma ---5- 7) brain tumor s- 8) other malignant tumor; please describe ·,....·,....· ,....,....,...,...,,....,....,- 0 9) other; please describe 8. How long has it been since the child has been diag- nosed? 21 1) 0-6 months 7 5) 37-L~B months (4 yrs) ·zo- 2) 7-12 months · · 3 6) 49-60 111onths (5 yrs) 1/ 3) 13-24 months - (2 yrs) ...13 7) over 5 years 17 4) 25-36 months ---r2··no answer) (3 yrs) 9. He/she is presently in remission or has no evidence of active tumor? 74 1) yes I'7 2) no ~ 3) unsure

10. Ref she is undergoing or has undergone radiation therapy? 68 1) yes 32 2) no llo He/she is presently on a chemotherapy program? 72 1) yes 2s 2) no

------'"""'!- ---·--·------·-- ~------·-----·------·--·--- ~- .,.._~ Page 3 84

12. Many diets claim to cure or help cure cancer, has your child been on any of these diets during his/her illness? (Check all that apEly) 2 1) megavitamin 1 7) fasting or cleansing therapy diet 1 2) low protein 2 8) high fiber -a- 3) Almond Diet 0 9) laetrile (B17 ) ~ 4) high protein, -z10) low calories --- high calorie 5 11) other; please describe 0 5) vegetarian 6) lmv fiber

13.. The above was suggested by: Check all that applyo 11 1) myself 7 6) dietitian/nutritionist o- 2) chiropractor -s- 7) books/magazines -r 3) friend t> 8) doctor ,-- 4) health food store -rr- 9) Cancer Control Society . 2 5) nurse · l 10) .other; please describe

14 .. Which answer best describes your child's weight when he was diagnosed? 59 1) at proper weight n- 2) underweight t> 3) overweight 12 4) don't know 15. Which answer best describes your child's weight at present? 56 1) at proper weight zo- 2) underweight ~ 3) overweight · ~ 4) don't know n- no answer) 16. Since your child was diagnosed, your interest in nutrition has: 50 1) increased · ro- 2) slight increase ~ 3) remained the same -r- 4) decreased Page 4 8 ""-·

17o How would information about your child's nutritional needs affect your feeling of-involvement in your child's treatment? 62 1) feel more involved .n- 2) no effect 0- 3) feel less involved rr- 4) don't know 18, Would you like information to help you to determine which nutrition information is sound and which .may be quackery? · 86 1) yes rr- 2) no "tr no answer) 19. wnich answer best describes your feeling about the . infonnation you have received regarding nutrition and 28 your child's illness? 1) adequate information ~r- 2) limited information "4'0"" 3) no information ~ no. a."1.swer) 20. \fuere has this information come from? Check all that apply: 40 1) no in format ion 6 7) relatives received -9- 8) dietitian/nutritionist 14 2) friends 13 9) books -g 3) social worker '""4-10) health food store -1- 4) other patients . 3 -11) other; plerise describe 30 5) doctor .!2-= 6) specific booklets 21. lfuere would you like to be able to get nutrition infor- :mat i or1? Check a 11 _t_h_a_t..,..-,a=-""p_.p....,l~zr-: 7 1) I· am not 3 8) relatives intere.sted 44 9) dietitian/nutritionist 2 2) · friends 26 10) books rz--· 3) social worker 2-11) health food store -o-· L4-) other patients 2 12) other; please describe :5b""" 5) doctor q:z-· 6) specific booklets I7 7) parent groups Page 5 86

22. Do you feel that the cause of cancer may be related to 0 diet? 1) always ~ 2) frequently 22 3) occasionally 1,2_ 4) never ii_ 5) don't know (2 no answer) 23. Which answer best describes how you feel proper diet will effect your child? 9 1) it will have no 0 3) the cancer will spread effect 43 2) the body ';vill 47 4) don't know recover faster n- no answer)

24o Do you try to avoid serving foods that contain any of the following? (Check all that ap ly) 26 1) nitrates · 40 6Y high fat content 4tJ 2) artificial coloring 25 7) cholesterol ~s- 3) artificial flavoring ·30 8) no foods are 4T 4) saccharin avoided 55 __ 5) high sugar content · 12 9) other; please describe

Does your child take any vitamin or minerals, supplements? 47 1) yes 53 2) no (go on to question 28) 26. If you answered yes to question 25, ·check all that ~: 24 1) multiple vitamin . 4 5) vitamin E rr- 2) multiple vitamin & 0 6) selenium -- mineral ,.-8 7) other, please de- 6 3) v'itamin A scribe; ---·- 1z- 4) vitamin ·c ...... 27 .. The above were suggested by: · check ·all ·that apply: 24 1) yourself 3 5) dietitian/nutri­ 23 2) doc. tor tionist -z 3) friend 2 6) other patients -3- 4) health food store . z- 7) other, please describe Page 6 87

28. Have you heard about food supplements (drinks, Puddings, etc. available to increase calorie and protein intake? 55 1) yes -43 2) no

29. Have you heard of parenteral nutrition (protein and calories given through the veins)? 30 1) yes bS" 2) no

Questions 30~37 refer to when your child is on active chemotherapy or radiation, does he/she have any of the following problems:

30. Mouth sores 4 1) always · 24 3) occasionally · 6 2) frequently · 57 4) never · (9 no· answer)

.. 31. Dry mouth 7 1) always 29 3} occasionally ~ 2) frequently · ·49 4) never -r9 ·no answer)

32. Certain foods tasting differently 5 1) always · 36 3) occasionally · II 2) frequently .. 38 4) never (9 no answer) 33. Nausea and/or vomiting 12 1) always 29 3) occasionally · !J 2) frequently · 31 4) never -(9 no ans·wer) 34. Diarrhea 4 1) always 41 3) o~~asionally · 6 2) frequently 40 4) never (9 no answer) 35. Constipation 4 1) always 32 3) occasionally · 7 2) frequently 49 4) never (9 no answer) Page 7 8B

36~ Tooth decay 2 1) always 20 3) occasionally ~- 2) frequently · 65 4) never \9 no answer)

37. Other, please describe~~~------~--~------2 1) always 5 3) occasionally -g- 2) frequently m no answer)

38 o \Vhen your child is on active chemotherapy, what hap- pens to his/her appetite? Check all that apply: 43 1) loses desire to eat z;- 2) only wants to eat favorite foods 3r- 3) appetite increases rr- 4) no change in appetite ~ 5) please describe your observations: 0no answer) ~~~~~------~~~~-~~----~~·~~~--~----

39 o \.Jould you like information on how to deal \vith any of the following problems? Check all that apply_: 17 1) foods that taste strange z~f- 2) mouth sores . ~ 3) nausea, vomiting rs- 4) diarrhea 20 5) constipation 18-- 6) dry mouth 4r- 7) lack of appetite 17 8) tooth decay ~8- 9) wieght gain due to certain drugs 1710} weight gain in general 26-11) weight loss 59 12) what is a proper diet for a child with cancer -7-13) other, please list: rs-no answer) THANK YOU ·VERY MUCH FOR YOUR COOPERATION: 89 ~ .

CHILDR.ENS HOSPITAL OF LOS" ANGELES

INFORMED CONSENT

FOR PARTICIPATION IN A CLINICAL RESEARCH PROGRAM EVALUATING

NUTRITIONAL ATTITUDES IN PARENTS OF CHILDREN WITH CANCER

I, am the parent of a child c·------"'------) who has a diagnosis of cancer and my participation

in an evaluation of nutritional attitudes and practices in accordance with a clinical research program has been proposedo Parents of children being treated for cancer at this institution are eligible to participate in the studyo This program require!? that I complete a confidential questionnaireo

PURPOSE

Nutritional attitudes .and practices of children with cancer may have an impC?rtant influence, either posi­ tively or negatively, on the cancer treatment. This program is designed to determine nutritional attitudes and practces in the group of patients treated at this institution so that educational plans which recognize the contribution of daily nutrition to the successful outcome of treatment for childhood cancer can be developed. 90

POTENTIAL BENEFITS

Understanding nutritional attitudes and practices will enable the development of appropriate nutritional counseling to improve the nutritional status of patients and to prevent the use of unproven and potentially hazard­ ous nutritional remedies. Better knowledge of the positive and negative effects of nutritional attitudes and practices may be helpful in the care of my child or other children.

INVESTIGATIONAL PLAN

I will be given a written questionnaire to complete .

. Any instruction required to complete the questionnaire will be provided by the nutrition student associated with the Division of Hematology-Oncology who will oe responsible for administering the questionnaire. There

will be no risk associated ~lith this procedure. Confi­ dentiality will be maintained through the use of coded numbers or initials rather than names for the purpose

of reporting. This ~vill oe a one-tilne only questionnaire and should take no longer than 15 minutes to complete.

GENERAL INFORMATION

How to obtain advice: daytime Monday through Friday, 8 am.to 5 pm, I may call area code 213, 669-2121. I may leave a mes.sage \-Jith a secretary and a doctor 91 will return my call. Evening, nighttime, and ·weekends or holidays: I may call the general hospital number, area code 213, 660-2450, and ask for the on-call hema­ tology doctor" I may be asked·to leave a message with the page operator and the-physician on-call will return my call as soon as possible" I understand that while physical injury resulting from participation in a research project is quite un­ likely, there is always some possibility of such physical injury. The Childrens Hospital of Los Angeles maintains professional liability insurance to protect patients from financial losses resulting from physical injury caused through the fault of the hospital, its employees or its agents" It is understood that in the absence of such fault, the hospital provides no reimbursement for treatment expenses or other compensation for physical injury suffered as a result of my participation in the research procedures described in this consent form. If I believe that physical injury has been suffered as a result of participation in this research project, I understand that I should contact the physician named in this consent form.

SUMHARY

I understand that I will be in a program to evaluate nutritional attitudes and practices in accordance with a 92 plan of clinical research approved by the Committee on Clinical Investigations and Publications (institutional review committee of this hospital). I understand that I have the right to withdraw from this program at any time . .Any physician involved in my child's care will answer any questions I have regarding this program. Subsequent treat- ment of my child at the Childrens Hospital of Los Angeles is in no way contingent upon my participation in this pro- gram.

SIGNATURE

My signature below is evidence that I have read this document, understand its meaning, and feel that I am act­ ing in my own best interest and .that of my child in con- senting to this program. I hereby give my consent to par- ticipate in the evaluation of nutritional attitudes and practices in accordance with this clinical research program.

(Parent/Guardian)

(Witness)

-(Date) Dr. -----"'(Signature) SES/KSR/msr 12/80