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A User's Manual for the Symptom Distress Scale

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A User's Manual for the Symptom Distress Scale A USER’S MANUAL FOR THE SYMPTOM DISTRESS SCALE Ruth McCorkle PhD, FAAN Mary E. Cooley PhD, AOCN Judy A. Shea PhD BACKGROUND INFORMATION ABOUT THE AUTHORS Ruth McCorkle PhD., FAAN, is a Professor of Nursing at Yale University School of Nursing. In addition, she is Director of the Center for Excellence in Chronic Illness Care. Her nursing career started at Maryland General Hospital in Baltimore, Maryland. Her research career began as a Clinical Nurse Specialist in Oncology in Iowa. Subsequently, Dr. McCorkle has established a nationally recognized graduate program in cancer nursing. She has been on the faculty at both University of Washington and University of Pennsylvania. Dr. McCorkle is internationally known for her research with patients living with cancer and the measurement of patient and family outcomes to improve the quality of their lives. Since the early eighties, she has studied the effects of nursing interventions by advanced practice nurses on clinical outcomes. Mary E. Cooley PhD., AOCN, is a post-doctoral fellow in Psychosocial Oncology at the University of Pennsylvania School of Nursing. She has worked as an advanced practice nurse in oncology since 1986 and is certified as an Advanced Oncology Nurse through the Oncology Nursing Society. Dr. Cooley is supported by Research Training Grant T32NR07035, National Institute of Nursing Research, Dr. Ruth McCorkle, Program Director. Her dissertation was patterns of symptom distress in adults receiving treatment for lung cancer. She has published extensively in clinical journals. Judy A. Shea PhD., is a health services researcher and psychometrician in the Division of General Internal Medicine, Department of Medicine, University of Pennsylvania. From 1983 through 1991 she was a psychometrician at the American Board of Internal Medicine. There she conducted traditional psychometric analyses of the certification examinations, and had a lead role in several research projects. From 1991 through 1995 she managed the AHCPR funded Biliary Tract PORT study at the University of Pennsylvania. Currently, Dr. Shea works with faculty designing and evaluating quality of life tools in rehabilitation medicine, HIV-AIDS, breast cancer, and head and neck cancer, among others. Her research interests include descriptions of the natural fluctuations in quality of life over time, prediction of transitions of quality of life, and linking quality of life assessments to clinical data. She has extensive experience in study design and analysis, and has published numerous articles that address psychometric attributes of tests and similar research instruments. RM/MC/JS/nd 4/3/00 i PREFACE When cancer is diagnosed, the patient faces new adjustments; among the most difficult is adjustment to distressing physical symptoms associated with cancer and its treatment (McCorkle, 1973). To facilitate control and management of symptom distress, psychometrically strong assessment tools are necessary. The Symptom Distress Scale (SDS) was one of the first scales developed to measure the construct of symptom distress, defined as “the degree of discomfort from the specific symptom being experienced as reported by the patient” (McCorkle & Young, 1978, p. 374). This manual provides information about the development and use of the SDS as an assessment and clinical outcome measure. The manual consists of five chapters. The first chapter describes the historical development, method of administration, and scoring procedures for the SDS. The second chapter presents information about the psychometric properties of the SDS from a variety of perspectives. In addition, summary data about the psychometric properties are presented in a tabular format to enable users to compare results of the SDS scores obtained in their samples with the SDS scores obtained in similar samples. Information about the translation of the SDS into French-Canadian, Italian, Spanish and Swedish versions is presented in chapter three. A summary of the use of the SDS in various studies, suggestions for future research, and information about obtaining the SDS are given in chapter four. The final chapter provides an annotated bibliography of studies that used the SDS. ii ACKNOWLEDGEMENTS There have been a number of people who have been instrumental in providing information and advice in the development of the SDS. A brief historical overview citing the formal connections is included in this manual but a few people need to be singled out for their unique contributions. In the early 1970’s, Drs. Saunders and Twycross at St. Christopher’s Hospice were responsible for instilling essential values related to evaluating the effectiveness of interventions on relieving patient symptoms. Jeanne Quint Benoliel also played a critical role in the development of the SDS by providing daily consultation and collaboration. Understanding patients’ symptom experiences and their meaning was an integral part of the graduate program, “Oncology Transition Services”, that Drs. McCorkle and Benoliel developed in community health nursing at University of Washington. Pat Altice, a Hospice of Seattle board member, was a patient who spent many hours validating her symptoms and the relief she obtained through interventions provided by the Oncology Transitions Services staff. Also, Dr. Kathy Young Graham was a doctoral student in Sociology at the University of Washington who worked as a research assistant to help establish the initial psychometric properties of the SDS. Finally, the data would not have been provided without the willingness and candor of the patients who completed the scales. We are also grateful to Drs. Jacqueline Fawcett, Lesley Degner, and Carol Moinpour for their review of the manual’s content and recommendations to strengthen it. This manual was developed with resources from an Institutional National Research Service Award entitled “Nursing Research: Psychosocial Oncology”, Grant No. T32 NR07036, National Institute of Nursing Research, Dr. Ruth McCorkle, Program Director. iii TABLE OF CONTENTS Page Preliminary Pages Background Information About the Authors .................................... i Preface ................................................................................................ ii Acknowledgments ............................................................................. iii Table of Tables ................................................................................. v Table of Appendices ........................................................................ vi Chapter 1 Overview of the Symptom Distress Scale ............................... 1 Background ............................................................................. 1 Historical Development of the Symptom Distress Scale ........ 2 Method of Administration ....................................................... 3 Scoring Procedure ................................................................... 4 Chapter 2 Psychometric Properties of the Symptom Distress Scale.......... 5 Definition of Psychometric Terms ........................................... 5 Psychometric Properties of the Symptom Distress Scale: Original Studies ....................................................................... 6 Psychometric Properties of the Symptom Distress Scale: Review of the Literature ........................................................ 7 Psychometric Properties of the Symptom Distress Scale: Newly Diagnosed Cancer Patients ....................................... 25 Chapter 3 Translation of the Symptom Distress Scale ......................... 44 French-Canadian Version (Andrea Laizner M.Sc. (A). .......... 44 Italian Version ......................................................................... 46 Southwest Oncology Group Spanish Version (Carol Moinpour PhD) ........................................................................ 46 Swedish Version (Carol Tishelman PhD) ................................ 48 Chapter 4 Summary of the Use of the Symptom Distress Scale .............. 50 Copyright information ............................................................. 51 Chapter 5 Annotated Bibliography for Studies Using the 13-Item Symptom Distress Scale ............................................................................... 52 References for Studies Using the Eight-Item Symptom Distress Scale ........................................................................................... 75 References for Studies Using the Ten-Item Symptom Distress Scale ......................................................................................... 75 References for Studies Using a Modified Symptom Distress Scale ....................................................................................... 75 Cited References ...................................................................... 77 iv TABLE OF TABLES Page TABLE 1 Internal Consistency Reliability for Forty-Seven Studies Using the Symptom Distress Scale ............................................ 9 TABLE 2 Concurrent Validity between the Symptom Distress Scale and Other Instruments ...................................................................... 13 TABLE 3 Mean Symptom Distress Scale Scores, Standard Deviations, and Ranges for Forty-Seven Studies .......................................... 16 TABLE 4 Summary of Demographics for the Cancer Patients (n= 683) ...... 27 TABLE 5 Item Frequency Distributions by Study Site ................................. 29 TABLE 6 Item Means and Standard Deviations by Study Site ...................
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