An Environmental Scan of Biopsychosocial and Clinical Variables in Cohort Studies of Cancer Survivors

Published OnlineFirst July 17, 2019; DOI: 10.1158/1055-9965.EPI-18-0541

Research Article Cancer Epidemiology, Biomarkers An Environmental Scan of Biopsychosocial and & Prevention Clinical Variables in Cohort Studies of Cancer Survivors Jessica L. Krok-Schoen1,2, Brittany M. Bernardo2, Joanne W. Elena3, Paige A. Green4, Elise Hoover3, Juan Peng5, Garnet L. Anderson6, Bette Caan7, Lisa G. Johnson6, and Electra D. Paskett2,8,9

Abstract

Background: An inventory of cancer survivorship cohorts is information on clinical characteristics and basic diagnostic necessary to identify important gaps in what is being studied information, patient demographic characteristics (n ¼ 57), among cancer survivors. patient-reported symptoms (n ¼ 44), lifestyle (n ¼ 45), and Methods: We conducted an environmental scan of cancer psychologic characteristics (n ¼ 42). Half collected biospeci- survivor cohorts to determine the scope and scale of informa- mens (n ¼ 35) and biomarkers (n ¼ 35); fewer collected CAM tion collected on demographic, biopsychosocial, and selected use (n ¼ 19) and social characteristics (n ¼ 27). clinical variables from cancer survivors. Cohorts were eligible Conclusions: Extensive data are available in cancer cohorts for inclusion in the environmental scan if the study was to study important questions relevant to cancer survivors. conducted in the United States, reported in English, and Cohorts should consider collecting information on social and consisted of data collected from cancer survivors postdiagno- environmental factors, as well as biospecimen collection and sis and followed for at least 1 year. biomarker analyses, and should include survivors from cancer Results: Out of the 131 cohorts identiﬁed, 62 were eligible. sites less likely to be studied. There were 23 cancer sites represented, and more than half of Impact: This information can assist researchers in under- the studies included breast cancer survivors (n ¼ 34). The standing the types of information currently being gathered next most commonly included cancers were leukemia (n ¼ 22) from cancer survivors for further analysis and identify areas and lymphoma (n ¼ 23). The majority (n ¼ 59) collected where more research is needed.

Introduction United States are cancer survivors, and the number of cancer survivors will increase over the next few years as the probability of According to the National Cancer Institute's (NCI) Office of survival after a cancer diagnosis continues to improve (1, 2). As Cancer Survivorship, "an individual is considered a cancer sur- the number of cancer survivors increases, it is becoming more vivor from the time of diagnosis, through the balance of his or her important to assess the short- and long-term consequences of life (1)." Recent estimates indicate that 15.5 million people in the cancer and its treatment, including the emotional, behavioral, economic, lifestyle, and psychosocial ramifications (3). In addition, a new body of research has begun to examine how biomar- 1Division of Medical Dietetics and Health Sciences, School of Health and Reha- kers (e.g., cortisol, inflammatory markers) relate to these psycho- bilitation Sciences, College of Medicine, The Ohio State University, Columbus, social outcomes (4, 5). Ohio. 2Comprehensive Cancer Center, The Ohio State University, Columbus, Although medical research is expanding to address the psycho- 3 Ohio. Epidemiology and Genomics Research Program, Division of Cancer social and behavioral challenges experienced following a cancer Control and Population Sciences, NCI, NIH, Bethesda, Maryland. 4Basic Biobe- diagnosis, these data are often collected from cross-sectional and havioral and Psychological Science Branch, Behavioral Research Program, Division of Cancer Control and Population Sciences, NCI, NIH, Bethesda, Mary- retrospective studies, limiting the inference that can be derived land. 5Center for Biostatistics, The Ohio State University, Columbus, Ohio. from them. As summarized by Elena and colleagues (6), few 6Public Health Sciences Division, Fred Hutchinson Cancer Research Center, existing cohort studies were designed with the ability to examine Seattle, Washington. 7Division of Research, Kaiser Permanente of Northern the role of behavioral, psychologic, and social contextual factors 8 California, Oakland, California. Division of Cancer Prevention and Control, on health outcomes after a cancer diagnosis. Therefore, a rigorous, Department of Internal Medicine, College of Medicine, The Ohio State University, multidisciplinary approach is needed to capture the full breadth Columbus, Ohio. 9Division of Epidemiology, College of Public Health, The Ohio State University, Columbus, Ohio. of cancer survivors' experiences in prospective longitudinal studies and identify the gaps among these studies. Corresponding Author: Electra D. Paskett, The Ohio State University, 1590 N. A 2011 paper by Harrop and colleagues (7) provided a review High Street, Suite 525, Columbus, OH 43201. Phone: 614-293-3917; Fax: 614-366- 5454; E-mail: [email protected] of current cancer survivorship research efforts and a summary of current survivorship research at NCI-designated Cancer Centers. Cancer Epidemiol Biomarkers Prev 2019;28:1621–41 They found that all cancer types required more attention from the doi: 10.1158/1055-9965.EPI-18-0541 research community and encouraged focus on late effects of 2019 American Association for Cancer Research. treatment among cancer survivor cohorts (7). In 2015, the

www.aacrjournals.org 1621

Krok-Schoen et al.

American Society of Clinical Oncology (ASCO) Survivorship was conducted for the key words "cancer survivorship" in the title Committee identified the need to better understand the current or abstract. scope of cancer survivorship research to identify future research The investigators then reviewed the studies to identify active opportunities (8). They surveyed ASCO members and found key cancer survivor epidemiology cohorts collecting behavioral, psy- gaps in current cancer survivorship research including several chologic, and social context data. Queries were also made using common cancers (e.g., colorectal, prostate, lung), long-term sur- the NIH RePORTER (https://projectreporter.nih.gov/reporter. vivors, older and younger survivors, and on survivorship care cfm), the Cancer Epidemiology Descriptive Cohort Database delivery and quality (8). (CEDCD; https://cedcd.nci.nih.gov/), and NCI Cohort Consor- A centralized inventory of information gathered from cancer tium (http://epi.grants.cancer.gov/Consortia/cohort.html) tools survivor epidemiology cohorts is needed to provide researchers to identify additional cancer survivor epidemiology cohorts that with the behavioral and psychosocial antecedents associated with may not have been captured in the literature review, by searching short- and long-term outcomes after the completion of cancer for currently funded projects in the United States using the key treatment. The first step is to examine the domains of measures word, "survivor" (Fig. 1). and use of validated scales in cancer survivor cohorts. Thus, we conducted an environmental scan of cancer survivor cohorts, to Survey administration determine the scope and scale of information collected on demo- A web-based REDCap (13) survey was developed to assess graphic, biopsychosocial, and selected clinical variables from behavioral, psychologic, social, biomarker, biospecimen, patient cancer survivors. Environmental scans utilize a variety of symptoms and comorbidities, and clinical treatment information approaches (e.g., literature review, a targeted survey) to determine collected in the identified cohorts, as well as the method of and interpret the scope of the pertinent literature on a particular measurement and source of metadata for these variables. The health outcome (9–12). This methodology is beneficial in the web-based survey was modeled after an earlier survey (9) used to study of cancer survivors cohorts given the breadth of variables collect information about cancer survivor cohorts for a different considered in cancer survivorship. These results will aid research- purpose. ers in understanding the types of information currently available Principal investigators (PI) or project representatives (identi- from cancer survivors, help identify gaps that future studies could fied by the PI as the staff person who is most knowledgeable about address, and encourage future research opportunities for collab- the project) of the identified cancer survivor epidemiology orative data pooling projects. cohorts were sent an email invitation to participate in October 2015. The invitation introduced the study, provided contact information for a study representative about questions or con- Methods cerns, and provided a link to the web-based survey. Potential Study design project representatives were asked to complete and return the Cancer epidemiology cohort studies with data collected on web-based survey within 1 month. A reminder e-mail was sent cancer survivors were identified and surveyed to assess which two weeks after the initial study email, a third reminder e-mail in psychologic characteristics, social context, patient demographics, December 2015, and a final fourth e-mail 1 month later. Two patient clinical and diagnostic information, comorbidities, telephone calls were also made to reach the nonresponders. medication use, lifestyle, biomarkers, biospecimens, patient- After the sixth attempt to contact, those potential respondents reported symptoms, and clinical treatment information have were considered "nonresponders." Study information was gath- been collected. ered for 24 nonrespondents from online searches of PubMed articles and websites including NIH RePORTER, clinicaltrials.gov, Cohort identification epi.grants.cancer.gov, grantome.com, fundedresearch.cancer.gov, Cohort studies were included if they met the following criteria: epi.grants.cancer.gov, pcori.org, and the nonresponder's institu- (i) data for cancer survivors were collected at least once in the time tion/study website. Sources of abstracted study information were period following cancer diagnosis, and (ii) the follow-up period the abstracts of grants, methods, and results sections of peer- for cancer outcomes was at least one year. Only studies conducted reviewed publications, and study summaries posted on study in the United States and published in English were considered. websites. Cohort studies that were (i) solely focused on cancer screening or cancer etiology and risk factors of cancer incidence, or (ii) a Measures registry database, biorepository, consortium, or web-based sup- The REDCap survey asked whether the following domains were port forums/programs/message boards without follow-up data collected in the cohort: psychologic characteristics, social context, were excluded. Eligibility assessment of these cohorts was per- patient demographics, patient clinical and diagnostic informa- formed by two reviewers (J.L. Krok-Schoen and B.M. Bernardo). tion, patient-reported symptoms, comorbidities, medication use, Using these eligibility criteria, we conducted a literature review complementary and alternative medicine (CAM) use, lifestyle, of the cancer survivorship literature using the PubMed and MED- biospecimens, and biomarkers processed from biospecimens. LINE databases, limited to original research in English and Each domain is further described below. cohorts that were active as of October 30, 2015. Reference lists of identified articles were reviewed for potentially eligible studies. Psychologic domain. Respondents to the online surveys were asked We searched the PubMed database using key words "cancer to identify (yes/no) which psychologic constructs and common survivor" combined with each of the following terms: "psycho- validated scales were collected in their respective cohort study. logic," "psychosocial," "health behavior," "health outcomes," Surveyed participants were provided with validated scales mea- "quality of life," "social determinants," "lifestyle," "late effects," suring specific psychologic constructs and were asked to select any and "long-term effects". A separate PubMed and MEDLINE search validated scales used to collect information from cancer survivors.

1622 Cancer Epidemiol Biomarkers Prev; 28(10) October 2019 Cancer Epidemiology, Biomarkers & Prevention

Environmental Scan of Cancer Survivor Cohort Studies

Studies identified Studies identified through through PubMed and NIH RePORTER and NCI MEDLINE searches Consortium searches n = 318 n = 437

Studies excluded due to eligibility criteria n = 292 Studies that met the Studies excluded due eligibility criteria to eligibility criteria n = 26 n = 317

Duplicates excluded n = 15 Studies identified Studies identified through through PubMed and NIH RePORTER and NCI MEDLINE Consortium n = 11 n = 120

Studies identified as eligible and sent survey n = 131

Studies excluded due to Studies eligible for eligibility criteria completion of survey n n = 69 = 62 (duplicates and intervention studies excluded)

Studies that responded Studies that did not to the survey respond to the survey and n = 38 data were abstracted n = 24

Studies included in analyses n = 62

Figure 1. Flow diagram of cohort identiﬁcation.

Examples of psychologic constructs and validated scales used to study. Surveyed participants were provided with a number of measure each construct include: anxiety (14), body image (15), validated scales measuring these social constructs and were asked depression (16), fear of cancer recurrence/cancer worry (17), to select any validated scales they used when collecting informa- loneliness (18), mood/affect (19), neuroticism (20), opti- tion from cancer survivors. Social constructs included but were mism (21), perceived cognitive ability (22), perceived stress (23), not limited to discrimination (30), financial hardship, natural, posttraumatic stress disorder (24), quality of life (25), satisfac- and built environment characteristics, religiosity (31), social tion (26), self-efficacy (27), sexual functioning/fertility issues (28), support (32), and survivor caregiving issues. and well-being PROMIS (29). Patient demographics. The administered surveys assessed types of Social domain. Social constructs were identified by asking respon- demographic information collected within cohorts. Participants dents to select (yes/no) which common validated scales associ- were asked (yes/no) which survivor demographic data were ated with those items were collected from their respective cohort collected in their cancer survivor cohort study, including survivor

www.aacrjournals.org Cancer Epidemiol Biomarkers Prev; 28(10) October 2019 1623

Krok-Schoen et al.

age, country of origin, educational attainment, ethnicity, family status, sleeping habits (36), smoking/tobacco use, stress manage- history of cancer, health insurance status, household size, income, ment (37), sun exposure, traumas/periods of hardship (38), and marital status, number of children, occupation, primary language, weight change. race, sex, sexual orientation, time spent at current residence, type of residence, U.S. citizen status, and veteran status. Biospecimens. To determine the extent of biospecimen data collection among cancer survivors, survey respondents indicated Patient clinical and diagnostic information. To determine which whether or not their study collected biospecimens from partici- patient clinical characteristics and diagnostic information were pants, and if so, which specimens were collected. Potential collected in the cohort studies, the survey asked which of the biospecimens could be blood, buccal cells, buffy coat, DNA, following clinical information was collected: cancer stage, grade expired carbon monoxide and salivary cotinine, feces, organ and type, receipt of chemotherapy, diagnosis date, diagnostic tissues samples, saliva, tumor tissue samples, and urine. tests, follow-up period, functional status, palliative/end-of-life care, provider information, recurrence, second cancer, time from Biomarkers. Finally, the surveys asked participants to indicate diagnosis to treatment, treatment type, tumor location, markers, which biomarkers were processed from collected biospecimens node, size, HPV vaccine receipt, and use of health care services. within their cohort study. Processed biomarkers included adipokines, androgen, C-reactive protein, carcinoembryonic antigen, Patient-reported symptoms. The survey also evaluated the types of cortisol, cotinine, epidermal growth factors receptor, estrogen, symptom data that cohort studies collected from participants. fibrin, glucose, HER2/NEU, hormones, human chorionic gonad- Symptom data included a myriad of symptoms that are com- otropin-b,inflammatory markers, insulin, insulin-like growth monly reported among cancer survivors, included but not limited factors, interleukin, leptin, prostate-specific antigen, serum tumor to aching joints, appetite change, coughing/wheezing, difficulty markers, sex hormone, and TNF. breathing, concentrating, sleeping, and swallowing, drowsiness, fatigue, fever, hair loss, headaches/migraines, hearing change, Analyses irritability, nausea, night sweats, nerve problems, neuropathy, To determine the frequency of collected domains and the pain, problems with sexual functioning/interest/activity, swelling common validated scales, descriptive frequency tables were gen- of limbs/hands/feet, urinary/bowel incontinence, vaginal/genital erated using IBM SPSS Statistical Program (Version 23). irritation/dryness, vision problems, vomiting, and weight gain/ loss. Results Comorbidities. Surveyed PIs or study representatives were asked Cohort identification (yes/no) which patient comorbidity data were collected in their The PubMed and MEDLINE searches for the key words cancer survivor cohort study. Comorbidity data included condi- resulted in 318 articles, 26 (8.2%) of which met the inclusion tions commonly reported among cancer survivors, including but criteria. Of these, 15 (57.7%) were duplicated from what was not limited to angina, diabetes, emphysema, frequent infections, found in the online database searches. Searches on NIH generalized anxiety disorder, heart or coronary artery disease, high RePORTER and the NCI Cohort Consortium produced 395 cholesterol, hypertension, kidney disease, major depressive dis- and 42 studies, respectively. Out of 437 studies in these order, osteoarthritis, osteoporosis, rheumatoid arthritis, second databases, 120 (27.5%) studies met the study criteria. Thus, primary cancer diagnosis, skin disorders, and vascular disorders. 11 studies were identified through PubMed and MEDLINE, 120 were found in the NCI Consortium and NIH RePORTER Medication use. The survey assessed whether medication data were resulting in a final sample of 131 studies identified as active collected from PIs or study representatives. Information regarding cancer survivor epidemiology cohorts. names of medications, dosage information, immunization his- A total of 131 studies were invited to participate, of which 13 tory, medication adherence, medication side effects, prevalence/ (9.9%) were ineligible for participation (e.g., study was not an mean number of any medications and prescription medications, epidemiologic study on cancer survivors). An in-depth review of therapeutic category, and types of medications were collected. the 118 studies was conducted and an additional 56 (47.5%) studies were excluded due to being duplicate subsets of survivor Complementary and alternative medicine. Respondents to the cohorts and intervention studies rather than cancer survivor surveys indicated whether information on complementary and epidemiology cohorts (Fig. 1). After the second review of studies, alternative medicine (CAM) therapies were collected in their the final sample included 62 cancer survivor epidemiology cohort cancer survivor cohort study. Several CAM therapies were con- studies, 38 (61%) of which responded directly to the study survey sidered, such as acupuncture, aromatherapy, biofeedback, chiro- and 24 (39%) of which were abstracted from online sources practic or deep breathing exercises, diet-based therapies, hypno- described above. sis, massage, meditation, music therapy, natural products, prayer/ Table 1 provides a breakdown of studies (N ¼ 62) by type(s) of religious practices, progression relaxation, qi gong, reflexology, cancer survivors studied. Out of the 62 studies that provided supplements, tai chi, and yoga. cancer type, 39 (62.9%) studies studied multiple types of cancer and 23 (37.1%) were single site studies. Most studies included Lifestyle domain. The survey also determined whether cohort breast cancer survivors (n ¼ 34, 54.8%), which is considerably studies collected various lifestyle information from cancer survi- more than the number of studies that included other cancer sites, vors. Lifestyle information included ability to perform daily lymphoma and leukemia, which consisted of 23 (37.1%) and 22 activities (33), alcohol use (34), body mass index, diet/nutrition, (35.5%) studies, respectively. Survivors of colon or rectal cancers physical activity/exercise (35), risky sexual behaviors, self-rated or Hodgkin disease were the next most researched with 21

1624 Cancer Epidemiol Biomarkers Prev; 28(10) October 2019 Cancer Epidemiology, Biomarkers & Prevention

Environmental Scan of Cancer Survivor Cohort Studies

Table 1. Cancer sites included among cancer survivor epidemiology cohorts Information collected within study domains a (n ¼ 62) In the psychologic domain, the most common information n Cancer sites (%) collected was quality of life (n ¼ 33), depressive symptoms (n ¼ Bladder 15 (24.2) 22), and anxiety symptoms (n ¼ 20). The least common psycho- Bone 17 (27.4) n ¼ Brain 17 (27.4) logic information collected was motivation ( 0), neuroticism n ¼ n ¼ n ¼ Breast 34 (54.8) ( 1), conscientiousness ( 0), self-control ( 1), and health Cervical 12 (19.4) literacy (n ¼ 1). In the social domain, the most common infor- Colon or rectal 21 (33.9) mation collected by the cancer survivor cohort studies was type of Esophageal 12 (19.4) social support received (n ¼ 17), financial hardship (n ¼ 7), Gall bladder 10 (16.1) survivor caregiving issues (n ¼ 6), religiosity (n ¼ 4), and accul- Hodgkin disease 20 (32.3) n ¼ Kidney 16 (25.8) turation ( 4). The least common social information collected n ¼ n ¼ Leukemia 22 (35.5) within the studies was civic participation ( 0), culture ( 0), Liver 12 (19.4) and sense of community (n ¼ 0). Studies that confirmed the Lung 14 (22.6) collection of demographic information most often gathered the Lymphoma 23 (37.1) age (n ¼ 53), race (n ¼ 47), ethnicity (n ¼ 46), education (n ¼ 38), Oral cavity 12 (19.4) marital status (n ¼ 38), and sex (n ¼ 35) of their participants. The Ovarian 16 (25.8) Pancreatic 12 (19.4) least common demographic information collected was partici- n ¼ n ¼ Prostate 18 (29.0) pants' citizenship status ( 0), veteran status ( 2), and sexual Skin, melanoma 17 (27.4) orientation (n ¼ 2). Stomach 12 (19.4) Of the cancer survivor epidemiology cohort studies that col- Throat or Neck 12 (19.4) lected clinical information, the most common information gath- Thyroid 13 (21.0) ered was on treatment type (n ¼ 54), cancer stage and grade (n ¼ Uterine, endometrial 15 (24.2) 40), and receipt of chemotherapy (n ¼ 41). The least common aCancer survivor epidemiology cohorts were not limited to collecting one cancer clinical information gathered was the receipt of palliative, end-of- type. life care (n ¼ 3), tumor vaccine (n ¼ 3), and clinical trial enrollment (n ¼ 6). The most common reported symptoms (33.9%) and 20 (32.3%) studies, respectively. Eight (12.9%) collected included pain (n ¼ 23), fatigue (n ¼ 18), and sleep studies focused on childhood cancer survivors. disturbance (n ¼ 14). The least common symptom information gathered was radiation burns (n ¼ 1), hair loss (n ¼ 2), and Study type and domains bruising easily (n ¼ 2). The most common comorbidity infor- The majority of the cancer survivor epidemiology cohort stud- mation collected was on diabetes (n ¼ 30), heart/coronary artery ies (n ¼ 59) collected information on clinical characteristics and disease (n ¼ 29), and hypertension (n ¼ 23). The least common basic diagnostic information. Studies also collected information comorbidity information gathered was about alcohol hepatitis on patient demographic characteristics (n ¼ 57), patient-reported (n ¼ 2), nonalcoholic steatohepatitis or nonalcoholic fatty liver symptoms (n ¼ 44), lifestyle (n ¼ 45), and psychologic (n ¼ 42) disease (n ¼ 2), and mononucleosis (n ¼ 2). Finally, the most characteristics associated with health behaviors, health outcomes, frequently collected medication information in the cancer survi- and well-being. Less commonly collected information included vor cohorts included the names of medications (n ¼ 21), med- biospecimens (n ¼ 35), biomarkers (n ¼ 35), CAM use (n ¼ 19), ication types (n ¼ 20), and therapeutic category (n ¼ 22). The least and social characteristics (n ¼ 27; Table 2). Survey respondents frequently collected information in the medication domain and nonrespondents' study information are combined to provide included medication side effects (n ¼ 4), medication adherence an inclusive summary of the information being gathered in (n ¼ 4), and immunization history (n ¼ 2). currently funded cancer survivor cohorts. In the CAM domain, the most commonly collected information was about supplement use (n ¼ 7), chiropractic (n ¼ 5), massage (n ¼ 5), acupressure (n ¼ 4), acupuncture (n ¼ 4), diet- Table 2. Collected domains among current cancer survivor epidemiology based therapies (n ¼ 4), and yoga (n ¼ 4). Information about cohorts, by response categorya ayurveda, chelation, homeopathic treatment, labyrinth walking, Nonresponders, Responders, movement therapy, progression relaxation, qi gong, reflexology, Domain n (%) n (%) and traditional healers, were not collected by any study. In the Psychologic 14 (58.3) 28 (73.7) lifestyle domain, studies most often collected information on Social 7 (29.2) 20 (52.6) exercise/physical activity (n ¼ 30), BMI (n ¼ 31), and smoking/ Demographic 20 (83.3) 37 (97.4) n ¼ Clinical 23 (95.8) 36 (94.7) tobacco use ( 30). The least frequently collected information Symptoms 19 (79.2) 25 (65.8) within the lifestyle domain was hydration habits (n ¼ 1), mind- Comorbidities 14 (58.3) 34 (89.5) fulness (n ¼ 1), and stress management (n ¼ 0). Medications 9 (37.5) 27 (71.0) Of the 35 studies that collected biospecimens, the most com- Complementary and alternative medicine 4 (16.7) 15 (39.5) monly collected specimens were blood plasma (n ¼ 23) and Lifestyle 15 (62.5) 30 (79.0) tumor tissues (n ¼ 14). The least common biospecimen collected Biospecimens 12 (50.0) 23 (60.5) n ¼ fi n ¼ Biomarkers 12 (50.0) 23 (60.5) was feces ( 1) and toe/ ngernails ( 1). Of the 35 studies that aCancer survivor epidemiology cohorts were not limited to collecting one explored biomarkers, the most common biomarkers examined domain. Collected domains for nonresponders were extracted from published were insulin (n ¼ 6), C-reactive protein (n ¼ 6), and glucose studies and websites; these domains may have been collected and not yet (n ¼ 5). No studies reported assessment of a-fetoprotein, cancer included in publication. antigens, catecholamines, chromosomes 3, 7, 9, 17, cotinene,

www.aacrjournals.org Cancer Epidemiol Biomarkers Prev; 28(10) October 2019 1625

Krok-Schoen et al.

Table 3. Use of common validated scales by domain in cancer survivor epidemiology cohortsa Psychologic domain Social domain Lifestyle domain (42 cohorts) (27 cohorts) (45 cohorts) n ¼ number of n ¼ number of n ¼ number of cohorts used cohorts used cohorts used Scales validated scale validated scale validated scale One-item depression screener 2 Centers for Epidemiological Scale-Depression (CES-D) 9 Generalized Anxiety Disorder Inventory 7-item scale (GAD-7) 4 Life Orientation Test/Revised (LOT/LOT-R) 4 Patient Health Questionnaire (PHQ-9) 2 Perceived Stress Scale and associated measures 4 Short Form Health Survey-36 item (SF-36) 9 State Trait Anxiety Inventory (STAI) 3 UCLA Loneliness Scale (R-UCLA, ULS-20, ULS-4) 3 Activities of Daily Living (ADL) 4 Baecke Activity Questionnaire (BAQ) 2 Harvard Food Frequency Questionnaire (HFFQ) 6 National Health and Nutrition Examination Survey (NHANES) 6 National Health Interview Survey (NHIS) 4 Pittsburgh Sleep Quality Index (PSQI) 6 Functional Assessment of Cancer Therapy (FACT) 2 2 Patient Reported Outcomes Measurement Information System (PROMIS) 3 1 Short Form Health Survey-12 item (SF-12) 6 3 Medical Outcomes Study (MOS)- short form and subscales 1 10 aNot all cohorts speciﬁed which validated scales were used to collect information.

cytokeratins, expired carbon dioxide, gonadotropin, human common cancer among women with favorable survival rates, increas- plement factor BTA, interleukin, KIT gene, nuclear matrix protein, ing the need to address problems these survivors face (2). In estrogen receptor, and thyroglobulin. addition, due to their large numbers, it may be easier to recruit breast cancer survivors compared with other cancer types. How- Common scales used within domains ever, there are important research questions that need to be Validated scales were commonly used to collect information addressed for cancer survivors across cancer site. It may be more from cancer survivors in three domains—psychologic, social, and difficult to recruit cancer survivors with shorter life expectancies, lifestyle. Forty-five cohort studies reported using validated scales yet there are many other cancers with favorable survival rates that within the lifestyle domain, 42 cohort studies and 27 cohort can be recruited into cohort studies. For example, we found that studies reported using validated scales within the psychologic and approximately 23% of the studies focused on lung cancer survi- social domains, respectively. In the psychologic domain, the most vors yet, in 2017, lung cancer has the second highest incidence rate common scales used were the 12 and 36-item short-form health than any other cancer in both men and women, and with targeted surveys [SF-36 (n ¼ 9); SF-12 (n ¼ 6)], and the Centers for treatments, some survivors are living for months and years with Epidemiological Scale-Depression [CES-D (n ¼ 9)]. The most significant symptoms (2). common scales used in the social domain were the Functional Second, the majority of the studies examined clinical, demo- Assessment of Cancer Therapy [FACT (n ¼ 2)], Medical Outcomes graphic, psychologic, and lifestyle measures, whereas fewer stud- Study [MOS (n ¼ 1)]. Within the lifestyle domain, the most ies gathered information about social factors, CAM use, and common scales were the Medical Outcome Study (n ¼ 10), collected biospecimens. Although a clinical focus (e.g., cancer Harvard Food Frequency Questionnaire (n ¼ 6), Pittsburgh Sleep type, cancer stage) is inherent in cancer survivor studies, more Quality Index (n ¼ 6), in addition to NHANES (n ¼ 6). Four scales effort should be made to not only collect more detailed and (FACT, MOS, PROMIS, and SF-12) were used to collect informa- complete data on these clinical variables but also expand into tion over multiple domains (Table 3). Study aims and general symptoms, adverse outcomes/toxicities, and treatment received. information for the cohorts can be found in Table 4. Finally, Table 5 Another important yet understudied area of cancer survivorship is reports scales included by cohort respondents. the use of CAM. In this study, we found that 30.7% of the studies collected information about the use of CAM in their studies. However, previous studies have found up to 67% of cancer Discussion survivors reported CAM use within the past year (39, 40). Future The purpose of this study was to conduct an environmental studies should consider measuring CAM use because it is a scan of cancer survivor cohorts, to determine the scope and scale common practice that could interact with treatment or disease of information collected on demographic, biopsychosocial, and progression, as well as affecting other psychologic, social, and selected clinical variables from cancer survivors. The increase in clinical characteristics of cancer survivors. the number of cancer survivors living longer has brought atten- Another research gap is the collection of information related tion to the importance of understanding and addressing the needs to social domain among cancer survivors. In this study, we of this population (9). Several key findings are apparent from this found that less than half of the studies explored social factors in study. First, the majority of studies included breast cancer survi- cancer survivorship. However, social factors such as acculturation, vors, while other major cancer sites, including lung, colon, and culture, and discrimination have repeatedly been shown to influ- prostate, are not as well-studied. Breast cancer is the most com- ence health behaviors of cancer survivors (41–43) and are of

1626 Cancer Epidemiol Biomarkers Prev; 28(10) October 2019 Cancer Epidemiology, Biomarkers & Prevention

Downloaded from cebp.aacrjournals.org on October 1, 2021. © 2019 American Association for Cancer Research. www.aacrjournals.org Table 4. Study aims and general information for included cancer survivor epidemiology cohorts Downloaded from Cohort Aims Sample size Eligibility Population Recruitment Respondents A Longitudinal Assessment (i) Evaluate the change in the proportion of 1,493 Males and females (18–45 years) Young adult survivors of Ongoing of Frailty in Young Adult young adult cancer survivors who are frail diagnosed with cancer in childhood, childhood cancers Survivors of Childhood from baseline to a point 5 years later not pregnant or receiving treatment Cancer (ii) Evaluate the association between frailty and for cancer, or enrolled on SJLIFE worsening of chronic health protocol conditions cebp.aacrjournals.org (iii) Describe the association between demo- Published OnlineFirstJuly17,2019;DOI:10.1158/1055-9965.EPI-18-0541 graphic and treatment factors and risk for prevalent frailty (iv) Estimate the effects of physical activity, diet, and smoking on risk for prevalent frailty American Cancer Society (i) Describe the quality of life (QoL) and health 6,306 Males and females (18 years old) Adult survivors of prostate, Enrollment complete Study of Cancer behaviors of cancer survivors as they progress diagnosed with 1 of 10 most highly breast, lung, colorectal, Survivors-I (SCS-I) longitudinally through the cancer survivorship incident cancers from April 2001– bladder, skin, kidney, lung, continuum March 2002, a resident of target state melanoma, ovarian, uterine, (ii) Examine the medical, demographic, at time of diagnosis and non-Hodgkin lymphoma on October 1,2021. ©2019 American Association forCancer Research. and psychosocial factors that inﬂuence survi- cancers sampled from 25 vors' QoL and health different cancer registries behaviors (iii) Provide data for future scientiﬁc, programmatic, information delivery, and health policy activities of the ACS and other institutions that will address the issues of cancer survivors Analysis of Morbidity and (i) Compare outcome rates in 1,792 Males and females (18 years old) who Adult HCT survivors Enrollment complete Mortality Among hematopoietic cell transplantation (HCT) received any HCT from 1992 to 2009, Hematopoietic Cell survivors with the general population as well as were alive 2 or more years Transplantation Survivors a non-HCT cancer population matched on posttransplant, were Washington

acrEieilBoakr rv 81)Otbr2019 October 28(10) Prev; Biomarkers Epidemiol Cancer original cancer diagnosis state residents at the time of (ii) Examine the association of pre-HCT and HCT- transplant, and received Studies Cohort Survivor Cancer of Scan Environmental related exposures with outcomes of interest transplantation for a malignant condition Antidepressants and (i) Examine drug interactions in breast cancer 16,887 Females (18 years old) diagnosed with Adult breast cancer survivors Ongoing through EMR Breast Cancer survivors breast cancer between 1996 and 2007 Pharmacoepidemiology (ii) Outcomes for the main study include recur- and treated with tamoxifen. Women rence and new primary cancers had pharmacy beneﬁts and were (iii) Other late effects in survivors also being estrogen-positive or progesterone- collected positive with no prior history of cancer ARIC-Ca (Cancer (i) Prospectively ascertain cancer incidence, 4,900 ARIC participants (males and females Participants in the ARIC study From 2013, cases are component of the ARIC recurrence/progression, and mortality 18 years old) were considered diagnosed with an incident ﬁrst ascertained from study) beginning in 2012, link participants with state eligible for the ARIC Cancer cohort if primary cancer medical records and cancer registries and Medicare to capture they consented to cancer research and self-report. Cancer unreported diagnoses were linkable to registry data registry linkages (ii) Retrospectively ascertain and characterize planned cancers and identify recurrence/progression, 1987–2011 (Continued on the following page) 1627 1628 acrEieilBoakr rv 81)Otbr2019 October 28(10) Prev; Biomarkers Epidemiol Cancer Table 4. Study aims and general information for included cancer survivor epidemiology cohorts (Cont'd ) al. et Krok-Schoen Downloaded from Cohort Aims Sample size Eligibility Population Recruitment Black Women's Health (i) To elucidate risk factors for cancer and 59,000 in Females (18 years old) enrolled in the Adult cancer survivors Ongoing Study nonmalignant illnesses in African American original Black Women's Health Study who women, by assessing current hypotheses and cohort, have been diagnosed with cancer hypotheses that arise in the future including 998 breast cancer survivors. Total number cebp.aacrjournals.org of cancer Published OnlineFirstJuly17,2019;DOI:10.1158/1055-9965.EPI-18-0541 survivors unknown Body Composition, Weight, (i) To examine effects of body composition 3,546 Males and females (18 years old) Adult colorectal cancer survivors Enrollment complete and Colon Cancer Survival (muscle, visceral fat, and subcutaneous fat) diagnosed between 2005 and 2010 on colorectal cancer survival with stage I–III invasive colorectal cancer at Kaiser Permanente Northern California (KPNC) Breast and Colon Cancer (i) Created a resource for investigating the >50,000 Six clinical sites collect data from Probands diagnosed with Ongoing Family Registries genetic epidemiology of breast and thousands of patients (males and colorectal or breast cancer and on October 1,2021. ©2019 American Association forCancer Research. colorectal cancers females, 18 years old), which are their families (ii) Expand to focus on gene–environmental inter- supplied to Informatics Support actions, risk assessment, and behavioral Center run by Georgetown response Cancer Epidemiology (i) To evaluate a series of hypotheses about men's Unable to Males (18 years old) in the Health Participation in the Health Unable to ascertain Cohort in Male Health health relating nutritional factors to the ascertain Professionals Follow-up Study Professionals Follow-up Study Professionals incidence of serious illnesses, such as cancer, heart disease, and other vascular diseases Cancer of the Prostate (i) To describe the natural history of 16,000 Males (18 years old) with varying Adult prostate cancer survivors Ongoing Strategic Urologic treatment for prostate cancer—clinical and stages of biopsy-proven prostate Research Endeavor patient-reported outcomes (PRO) adenocarcinoma diagnosed at 43 different practices, academic centers, and Veteran Affairs hospitals in the United States since 1995 Childhood Cancer Survivor (i) To characterize the experience of >25,000 (goal: Males and females (21 years old) Childhood cancer survivors Ongoing

acrEieilg,Boakr Prevention & Biomarkers Epidemiology, Cancer Study childhood cancer survivors regarding long- 50,000) diagnosed with cancer who survived 5 term effects of cancer and its associated or more years after diagnosis of treatments cancer, who were 18 years old at (ii) To gather information about health- baseline enrollment, and whose related behaviors and patterns of care use of primary cancer treatment was cancer survivors between January 1970 and December 1999. The cohort has been assembled within 31 participating centers in the United States (Continued on the following page) www.aacrjournals.org Table 4. Study aims and general information for included cancer survivor epidemiology cohorts (Cont'd ) Downloaded from Cohort Aims Sample size Eligibility Population Recruitment Cognition in Older Breast (i) Examine the association of APOE status, 480 (goal: 540) Older (60 years old) long-term Adult breast cancer survivors Ongoing Cancer Survivors: smoking history, and therapeutic exposures (5–15 years postdiagnosis) female Treatment Exposure, on the cognitive performance among older breast cancer survivors who were APOE, and Smoking breast cancer survivors compared with 55 years old at the time of breast controls cancer diagnosis and matched healthy (ii) Utilize growth mixture modeling techniques to controls determine trajectories of longitudinal change cebp.aacrjournals.org in cognitive function among older breast can- Published OnlineFirstJuly17,2019;DOI:10.1158/1055-9965.EPI-18-0541 cer survivors and controls (iii) Explore associations among cognitive reserve, APOE, smoking history, and therapeutic exposures on cognitive functioning at study entry and the pattern of longitudinal change and survival (iv) Explore the association of allostatic load and therapeutic exposures with cognitive performance among older breast cancer survivors on October 1,2021. ©2019 American Association forCancer Research. compared with controls ColoCare-Study: (i) Disease-free and overall survival of 5,000 Males and females 18–89 years old who Adult colorectal cancer survivors Ongoing Transdisciplinary colorectal cancer are newly diagnosed with colon or Research in Colorectal (ii) Colorectal cancer recurrence rectal cancer (stages 1–4), speak Cancer Prognosis English, and are able to consent COmmonly used (i) To study how medications used in the 4,216 Females (18 years old) living within the Adult breast cancer survivors Enrollment complete Medications and Breast management of comorbidities inﬂuence breast 13 counties covered by the Cancer Outcomes cancer outcomes Washington state SEER, diagnosed (COMBO) (ii) To understand the association between car- with stage 1 or 2 breast cancer with no diovascular disease medications and second bilateral disease between 1990 and breast cancer events 2008, and enrolled in group health practice for a year before and after

acrEieilBoakr rv 81)Otbr2019 October 28(10) Prev; Biomarkers Epidemiol Cancer breast cancer diagnosis Comparative Effectiveness (i) To determine the effectiveness of 36,444 Female breast cancer survivors Adult breast cancer survivors Enrollment complete Studies Cohort Survivor Cancer of Scan Environmental of Surveillance Imaging mammography compared with (18 years old) included in the breast Modalities in Breast mammography with breast MRI to detect cancer surveillance consortium with Cancer Survivors second breast cancer events in women after stage 0–III incident breast cancer treatment for breast cancer diagnosed between 2005 and 2012 Determinants of late (i) To examine clinical, demographic, and genetic 5,000 2-year HCT survivors (males and Adult HCT survivors Enrollment complete cardiovascular morbidity risk factors for adverse late cardiovascular females, 18 years old) treated at the among survivors of outcomes among HCT survivors Fred Hutchinson Research Center hematopoietic CE since 1969 Diet and Lifestyle in a (i) Determine the associations of cruciferous 1,811 Newly diagnosed noninvasive bladder Adult invasive bladder cancer Enrollment complete Prospective Study of vegetable intake with bladder cancer cancer patients (males and females, survivors Bladder Cancer Survivors recurrence and progression 18 years old) in the Kaiser (ii) Examine the modifying effect of genetic Permanente Northern California and variants in ITC-metabolizing genes on Southern California medical care the associations between cruciferous programs vegetable intake and bladder cancer recurrence and progression (iii) Evaluate the effects of the interactions between cruciferous vegetable intake and therapeutic agents on bladder cancer recurrence and progression (Continued on the following page) 1629 1630 acrEieilBoakr rv 81)Otbr2019 October 28(10) Prev; Biomarkers Epidemiol Cancer rkShe tal. et Krok-Schoen Table 4. Study aims and general information for included cancer survivor epidemiology cohorts (Cont'd ) Downloaded from Cohort Aims Sample size Eligibility Population Recruitment Emotion Regulation and (i) Investigate how personal vulnerabilities, 460 Female (21 years old) breast cancer Adult breast cancer survivors Enrollment complete Depression in Breast cancer-related and noncancer-related patients within 4 months of new or Cancer Survivorship stressors, and emotion regulation processes recurrent breast cancer shape trajectories of depression in women following diagnosis of breast cancer (ii) Examine a diathesis-stress model, in which interactions of personal vulnerabilities, cebp.aacrjournals.org genetic factors, and stressors shape Published OnlineFirstJuly17,2019;DOI:10.1158/1055-9965.EPI-18-0541 depressive response (iii) Examine a proximal model of how emotion regulation processes (approach and avoidance) mediate the effects of personal vulnerabilities on depressive symptoms and episodes Epidemiology of Cancer in a (i) To study risk factors for cancer incidence and 11,517 first Postmenopausal female participants in Females diagnosed with cancer in Enrollment complete Cohort of Older Women mortality primary the Iowa Women's Health Study the Iowa Women's Health (ancillary study to the cancers from Study on October 1,2021. ©2019 American Association forCancer Research. Iowa Women's Health 41,836 Study) participants in original cohort Evaluating Cancer (i) To help understand how to best deliver follow- 992 Adult (males and females, 18 years old) Adult breast, prostate, and Enrollment complete Survivorship Care Models up care to cancer survivors survivors sampled from focus groups colorectal cancer survivors and national surveys Improving the Care and (i) To obtain information on 3,083 Unable to ascertain Breast cancer survivors Enrollment complete Outcomes of Women sociodemographic and treatment factors, and Undergoing Breast the economic and health outcomes of breast Surgery cancer care conducted in four states— California, Florida, Illinois, and New York Long-term Multidisciplinary (i) Expand the infrastructure for cancer Unable to Females (18 years old) enrolled in the Participants in the Nurses' Health Enrollment complete Study of Cancer in survival research, including both the duration ascertain original Nurses' Health Study Study Women: the Nurses' and QoL in cancer patients acrEieilg,Boakr Prevention & Biomarkers Epidemiology, Cancer Health Study (ii) Improve the infrastructure to support a systems biology approach to the research, integrating questionnaire data with biomarkers in DNA, blood, tumor tissue, and other biospecimens; such research simulta- neously integrating multiple systems, including behavior, genomics, transcriptomics, metabolomics (Continued on the following page) Table 4. Study aims and general information for included cancer survivor epidemiology cohorts (Cont'd ) www.aacrjournals.org Cohort Aims Sample size Eligibility Population Recruitment Downloaded from Ovarian Reserve After (i) To assess acute changes in reproductive 196 Females (11–35 years old) who received Child and adult cancer survivors Enrollment complete Cancer: Longitudinal function during and after chemotherapy in treatment for a cancer that includes Effects (the ORACLE cancer patients chemotherapy study) (ii) To assess the long-term reproductive function of women exposed to cancer therapies and make comparisons to similarly aged and late reproductive aged unexposed females cebp.aacrjournals.org (iii) Assess for the presence of follicular and luteal Published OnlineFirstJuly17,2019;DOI:10.1158/1055-9965.EPI-18-0541 dysfunction in cancer survivors by comparing daily urinary hormone metabolites over two menstrual cycles between subjects exposed to high-dose alkylating agent therapy and two unexposed populations of females Patient decision making (i) To evaluate the quality of decisions about 145 Females (21 years old) who were Adult breast cancer survivors Enrollment complete about breast breast reconstruction by assessing patient planning to undergo mastectomy for reconstruction after knowledge, concordance between stage I–III invasive ductal or lobular mastectomy preferences and treatment, and decision- breast cancer, ductal carcinoma in situ, on October 1,2021. ©2019 American Association forCancer Research. making processes or prophylaxis (ii) To assess the accuracy of patients' preopera- tive predictions about their postoperative body image and well-being and the association between prediction accuracy and satisfaction with decisions (iii) To assess the effects of breast reconstruction on QoL and body image and the potential modification of these effects by preference concordance Pediatric Cancer, Family (i) To describe the course of family conflict across Unable to Families of young children (males and Families of young children Enrollment complete Conflict, and Child the disease process for each of four family ascertain females, 2–18 years old) recently diagnosed with cancer

acrEieilBoakr rv 81)Otbr2019 October 28(10) Prev; Biomarkers Epidemiol Cancer Adjustment subsystems diagnosed with the most common (ii) To test whether stress occurring during cancer forms of young childhood cancer: Studies Cohort Survivor Cancer of Scan Environmental treatment is associated with family conflict acute lymphoblastic leukemia, central across the disease process and whether family nervous system tumors, Wilms tumor, conflict increases with increases in stress and neuroblastoma (iii) To test whether the degree of family conflict at the early stages of the disease process predicts the manner in which families deal with the treatment process itself, as assessed by the degree of family conflict and child and caregiver adjustment during the course of treatment (iv) To test whether family conflict mediates rela- tions between stress during cancer treatment and adjustment in children with cancer and their caregivers Penn State Cancer Survivor (i) To evaluate economic and QoL 1,763 A cohort of cancer survivors (males and Adult cancer survivors Enrollment complete Study (PSCSS) consequences of survivorship over the females, 25–62 years old at diagnosis) medium term (2–7 years) from the tumor registries of four medical centers in the eastern United States, diagnosed with cancer from 1997 to 1999 (Continued on the following page) 1631 1632

Table 4. Study aims and general information for included cancer survivor epidemiology cohorts (Cont'd ) acrEieilBoakr rv 81)Otbr2019 October 28(10) Prev; Biomarkers Epidemiol Cancer rkShe tal. et Krok-Schoen Cohort Aims Sample size Eligibility Population Recruitment Downloaded from Project REACH (i) To establish a prospective cohort study of 299 Males and females (18 years old) Adult survivors of childhood/ Enrollment complete cancer survivors followed in one of the 2 years from their cancer diagnosis adolescent cancers Institute's pediatric survivorship clinics to study and 1 year from completion of cancer psychosocial and medical outcomes and risk therapy factors for poor outcomes in this population Prospective study of the (i) To compare breast cancer survivors in the Unable to Females (18 years old) enrolled in the Adult breast cancer survivors Enrollment complete impact of breast cancer Study of Women's Health Across the Nation ascertain SWAN cohort on symptoms and (SWAN) cohort to women in the cohort who cebp.aacrjournals.org functioning have not developed cancer on multiple Published OnlineFirstJuly17,2019;DOI:10.1158/1055-9965.EPI-18-0541 outcomes such as symptoms, QoL, and functioning (physical, cognitive, sexual) (ii) Among breast cancer survivors only, examine the impact of cancer treatment on above outcomes, as well as newly acquired data (iii) As an exploratory aim, compare survivors and age-matched controls to examine the impact of cancer on C-reactive protein Prostate Cancer Active (i) To discover and confirm biomarkers that 2,300 Males (21 years old) diagnosed with Adult prostate cancer survivors Ongoing on October 1,2021. ©2019 American Association forCancer Research. Surveillance Study predict aggressive disease as defined by histologically confirmed clinically (PASS) prespecified histologic, clinical criteria, or localized cancer of the prostate. outcomes based on these variables Eligible participants have no previous (ii) To determine the proportion of patients on treatment for prostate cancer, have an active surveillance who progress based on the Eastern Cooperative Oncology Group above criteria performance status of 0 or 1, have (iii) To determine the clinical predictors of disease elected active surveillance and their progression planned management for prostate (iv) To measure the recurrence-free, disease-spe- cancer. If diagnosis was within 1 year of cific, and overall survival of men on active baseline, participant must have one surveillance for clinically localized prostate biopsy with at least 10 cores. If cancer diagnosis was more than 1 year prior to baseline, participant must have 2 biopsies, one of which must be within 2 years prior to baseline visit acrEieilg,Boakr Prevention & Biomarkers Epidemiology, Cancer Prostate Cancer Outcomes (i) Assess disease-specific QoL after diagnosis of 3,533 Males (<89 years old) diagnosed with Adult prostate cancer survivors Enrollment complete Study clinically localized prostate cancer invasive prostate cancer diagnosed from October 1994 to October 31, 1995. Participants (60–89 years old) from King County, WA, were eligible Quadrivalent Human (i) Estimate the prevalence of HPV vaccine 1,150 Male and female cancer survivors Child and young adult cancer Enrollment complete Papillomavirus (HPV) initiation in cancer survivors ages 9 to (9–26 years old) who attended a clinic survivors Vaccine in Cancer 26 years and examine the sociodemographic, appointment at one of the Survivors behavioral, and medical determinants of HPV participating sites vaccine noninitiation (ii) Among cancer survivors identified to be nonim- munized in Aim 1 and by additional methods, use a single-arm, phase II, open-label, prospective longitudinal trial design to evaluate the 3-dose quadrivalentHPVvaccineseriesandmeasurethe following endpoints: (a) Determine immunogenicity following the third and final vaccine dose; (b) Identify clinical/host factors influencing immunogenicity; and (c) Determine the safety/ tolerability of the vaccine in cancer survivors (Continued on the following page) www.aacrjournals.org Table 4. Study aims and general information for included cancer survivor epidemiology cohorts (Cont'd ) Downloaded from Cohort Aims Sample size Eligibility Population Recruitment Reducing racial/ethnic (i) To identify risk and protective factors of 1,232 Male and female (18–39 years old) Young adult survivors of Ongoing inequities in childhood receiving cancer-related follow-up care Hispanic and non-Hispanic childhood childhood cancer cancer survivorship among Hispanic and non-Hispanic childhood cancer survivors cancer survivors The Pathways Study (i) To examine predictors of recurrence and 4,505 Females (21 years old at diagnosis), had Adult breast cancer survivors Enrollment complete survival after breast cancer, with a focus on no prior history of cancer (other than the following: (a) lifestyle factors, including nonmelanoma skin cancer), could cebp.aacrjournals.org diet, physical activity, and complementary and speak English, Spanish, Cantonese, or Published OnlineFirstJuly17,2019;DOI:10.1158/1055-9965.EPI-18-0541 alternative medicine; (b) molecular factors, Mandarin, and lived within 65 miles of a including germline and somatic mutations and study field interviewer; all participants metabolic markers; (c) medical care factors; were recently diagnosed with invasive and (d) area-level contextual factors breast cancer from Kaiser Permanente Northern California between 2006 and 2013 The Reproductive Window (i) Estimate variability in the window of ovarian 1,000 Females (18–35 years old) who have Young adult cancer survivors Enrollment complete Study in Young Adult function by cancer treatment toxicity using the completed treatment for cancer Cancer Survivors endocrine biomarkers AMH, FSH, and E2 on October 1,2021. ©2019 American Association forCancer Research. (ii) Determine the association between psychologic distress and ovarian function in young cancer survivors (iii) Generate clinical profiles for the window of ovarian function in the moderate gonadotoxi- city group The Young Women's Breast (i) To identify a cohort of young women (age 40 1,302 Females (40 years old) newly Adult breast cancer survivors Enrollment complete Cancer Study or younger) newly diagnosed with breast diagnosed with breast cancer from cancer in Eastern Massachusetts academic and community health care (ii) To characterize the population of young wom- institutions en at diagnosis and in follow-up regarding disease and psychosocial

acrEieilBoakr rv 81)Otbr2019 October 28(10) Prev; Biomarkers Epidemiol Cancer outcomes (iii) To collect tumor and blood specimens to char- Studies Cohort Survivor Cancer of Scan Environmental acterize the tumors and bank for future studies Total Cancer Care (i) To improve our capacity to predict 120,000þ Males and females (18 years old) who Adult patients at participating Ongoing diagnosis, prognosis, and response to therapy are a patient at the participating cancer centers and health care in the care and treatment of the cancer patient institution and either have cancer or institutions are at risk for cancer. Participants should be able to understand and sign the TCCP informed consent and research authorizations forms (either directly or through an authorized representative) UNC Health Registry/Cancer (i) To better understand the causes of 7,500þ Males and females (18 years old), have Adult patients in the North Enrollment complete Survivorship Cohort disease, such as cancer. Aim to prevent, treat, a North Carolina address and an Carolina Hospital System and help people live full lives appointment in the North Carolina Hospital System (Continued on the following page) 1633 1634 acrEieilBoakr rv 81)Otbr2019 October 28(10) Prev; Biomarkers Epidemiol Cancer Table 4. Study aims and general information for included cancer survivor epidemiology cohorts (Cont'd ) al. et Krok-Schoen Downloaded from Cohort Aims Sample size Eligibility Population Recruitment Urinary Diversion Among (i) Determine the sociodemographic, clinical, 1,250 Males and females (18 years old) with Adult bladder cancer survivors Enrollment complete Bladder Cancer Survivors: surgeon characteristics that predict urinary bladder cancer undergoing Cost, Complications, and diversion (UD) choice among bladder cancer cystectomy and their family caregivers Quality of Life patients receiving cystectomies within three Kaiser Permanente (ii) Compare incremental health care regions expenses attributable to UD and the incidence of late UD-related complications (>90 days cebp.aacrjournals.org post-op) for patients with ileal conduits vs. Published OnlineFirstJuly17,2019;DOI:10.1158/1055-9965.EPI-18-0541 neobladders (iii) Determine the impacts of UD type on economic and patient- and family- centered outcomes, as collected in surveys of 375 patients at 6 and 18 months after UD surgery Women's Circle of Health (i) The impact of body fatness (body mass index, 1,900 White or African American females Adult breast cancer survivors Enrollment complete Study body fat distribution, and body composition) (20–75 years old) newly diagnosed on breast cancer treatment received (including with breast cancer between on October 1,2021. ©2019 American Association forCancer Research. chemotherapy dose reduction and delay) and 2006–2012, able to read and outcomes (breast cancer–speciﬁc mortality, understand English, with no prior competing-cause mortality, all-cause history of cancer (except mortality, QoL) nonmelanoma skin cancer) (ii) The impact of obesity-related comorbidities which are more common among African Amer- icans, including hypertension and diabetes, in relation to breast cancer treatment and outcomes, and whether optimal management of these conditions impact outcomes (iii) Potential mechanistic pathways, including immune factors, vitamin D, adipokines, and indicators of insulin resistance, that potentially mediate the effects of obesity and obesity- related comorbidities

acrEieilg,Boakr Prevention & Biomarkers Epidemiology, Cancer Nonrespondents Adolescent and Young Adult (i) Examine factors associated with cancer 523 Males and females (15–39 years old at Young adult survivors of acute Enrollment complete Health Outcomes and treatment in general practice (i.e., use of diagnosis) diagnosed between July 1, lymphocytic leukemia, Hodgkin Patient Experience Study clinical trials and treatment protocols) 2007 and October 31, 2008 with a lymphoma, non-Hodgkin (ii) Assess PROs such as health-related quality of germ cell cancer (non-Hodgkin lymphoma, germ cell cancer or life (HRQOL), unmet needs, and the impact of lymphoma, Hodgkin lymphoma, acute sarcoma cancer treatments on psychosocial domains lymphocytic leukemia, Ewing sarcoma, osteosarcoma, or rhabdomyosarcoma); participants must be residents of the study area and able to read English American Cancer Society (i) To better understand and address the 9,105 Males and females (18 years old at Adult survivors of prostate, Enrollment complete Study of Cancer needs of long-term cancer survivors diagnosis) with 1 of 6 highly incident breast, colorectal, bladder, skin Survivors-II (SCS-II) cancers 2, 5, or 10 years prior to melanoma, or uterine cancer sampling (Continued on the following page) Table 4. Study aims and general information for included cancer survivor epidemiology cohorts (Cont'd ) www.aacrjournals.org Cohort Aims Sample size Eligibility Population Recruitment Downloaded from Assessment of Cancer (i) Describe patient-reported symptom 250 Males and females (18 years old) Adult breast cancer survivors Ongoing Concerns at the End of burden and concerns, QoL, and health diagnosed with invasive breast cancer Treatment (ACE) behaviors of breast cancer survivors who have within 1 year of completing primary completed initial treatments treatment, and scheduled for an end of (ii) Assess the feasibility of using a web-based treatment visit. Participants must platform to collect PRO data understand English, have Internet and (iii) Evaluate provider satisfaction following deliv- working e-mail address ery of an electronic health record cebp.aacrjournals.org summary of the PROs Published OnlineFirstJuly17,2019;DOI:10.1158/1055-9965.EPI-18-0541 Bio-behavioral Research at (i) Deﬁne long-term trajectories of cognitive 1,280 Females (65 years old) diagnosed with Adult breast cancer survivors Enrollment complete the Intersection of Cancer decline, determine bio-behavioral risks for invasive nonmetastatic breast cancer and Aging decline and were within 20 weeks of surgery, (ii) Examine how systemic therapy and lifestyle spoke English or Spanish, and passed factors moderate these relationships an entry cognitive screen (iii) Conduct exploratory research on biological age markers to determine feasibility and clinical utility for predicting risk and trajectory of functional decline on October 1,2021. ©2019 American Association forCancer Research. (iv) Enhance long-term clinical and policy impact by incorporating data into policy modeling, engaging survivors in design and communication of results, and supporting training Bone Marrow Transplant (i) Describe the burden of morbidity borne by 7,465 Males and females who have undergone Leukemia and lymphoma Enrollment complete Survivor Study I & II HCT survivors and compare with siblings transplantation at City of Hope or survivors who received bone (ii) Create a repository of DNA from HCT survivors University of Minnesota between 1974 marrow transplant and siblings and 2010 and survived at least 2 years Breast Cancer Treatment (i) Describe breast cancer recurrence, second 1,277 Females (65 years old at diagnosis) Women from the BOW cohort Enrollment complete Effectiveness in Older primary cancer, or death from any cause 5 with stage I or II breast cancer from who survived disease-free for Women (BOW) cohort years after initial breast cancer diagnosis, or 1990 to 1994 in six geographically 5 years study survival for an additional 5 years diverse Cancer Research Network

acrEieilBoakr rv 81)Otbr2019 October 28(10) Prev; Biomarkers Epidemiol Cancer health care systems Colorectal Cancer (i) Investigate clinical outcomes, including 250 Males and females (18 years old) newly Adult colorectal cancer survivors Unable to ascertain Studies Cohort Survivor Cancer of Scan Environmental Outcomes, Prognosis, and disease-free and overall survival, predictors diagnosed with invasive Epidemiology Cohort of cancer recurrence, survival, HRQOL, and adenocarcinoma of the colon or (COPE) (sister cohort to treatment toxicities rectum ColoCare) (ii) Conduct cross-sectional analyses of biomarkers and/or health behaviors Commonly Used (i) To evaluate the inﬂuence of commonly used 3,300 Males and females (18 years old) with Adult colorectal cancer survivors Enrollment complete Medications and Risk of medications on colorectal cancer recurrence stage I–IIIA colorectal cancer Colorectal Cancer diagnosed from 1995 to 2014 in two Recurrence integrated health care delivery systems Communication and (i) Longitudinally assess how cancer 250 Males and females (18 years old) with Adult hematologic cancer Enrollment complete economic outcomes for communication between caregivers and hematologic cancer at any stage of survivors cancer survivors patients are associated with short- and long- disease who had begun initial term economic, psychosocial, and health care treatment outcomes (ii) Examine patient and family characteristics associated with decreased levels of cancer communication (Continued on the following page) 1635 1636 acrEieilBoakr rv 81)Otbr2019 October 28(10) Prev; Biomarkers Epidemiol Cancer Table 4. Study aims and general information for included cancer survivor epidemiology cohorts (Cont'd ) al. et Krok-Schoen

Downloaded from Cohort Aims Sample size Eligibility Population Recruitment Health, Eating, Activity and (i) Examine self-reported QoL, including 1,183 Females (18 years old) diagnosed with Adult breast cancer survivors Enrollment complete Lifestyle (HEAL) Study measures of physical and mental functioning; breast cancer between July 1996 and symptoms such as fatigue, pain, lymphedema, March 1999 from 3 parts of the United and changes in sexual functioning; stress and States: Western Washington, New psychosocial responses to the cancer Mexico, and Southern California experience; social support; information access; optimism; and religiosity cebp.aacrjournals.org

(ii) Collect information on anthropometrics, body Published OnlineFirstJuly17,2019;DOI:10.1158/1055-9965.EPI-18-0541 composition, and hormone measurements from women with early-stage breast cancer at a baseline and at 2 years (iii) Examine the relationship between physical activity, diet, weight history, and body composition and breast cancer prognostic characteristics (iv) Examine the relationships between modifiable prognostic factors, including on October 1,2021. ©2019 American Association forCancer Research. physical activity, diet, body weight and composition, and breast cancer recurrence and survival (v) Assess the associations of biomarkers with body composition, diet, and physical activity (vi) Examine the associations between genetic polymorphisms and other risk factors (vii) Examine associations between mammographic density and other factors and survival Late Effects of Treatment in (i) To determine the incidence and risk factors, 9,240 enrolled Males and females enrolled in the original Adult survivors of childhood Enrollment complete Wilms Tumor Survivors including disease, treatment, and host factors during National Wilms Tumor Study Wilms tumor and Offspring for endpoints affecting Wilms tumor survivors, 1969–2002 such as: congestive heart failure, respiratory National failure, renal failure, second malignant Wilms Tumor neoplasms, diabetes Study fi – acrEieilg,Boakr Prevention & Biomarkers Epidemiology, Cancer Life After Cancer (i) To examine how modi able behavioral risk 2,321 Females (18 79 years old) diagnosed Adult breast cancer survivors Enrollment complete Epidemiology (LACE) factors affect QoL, recurrence, and long- with primary breast cancer within Cohort term survival 39 months of enrollment and have completed treatment Mayo Clinic Lung Cancer To improve the current understanding of the etiology Unable to Males and females (18 years old) Adult lung cancer patients Unable to ascertain Cohort and natural history of primary lung cancer ascertain diagnosed with lung cancer and treated at the Mayo Clinic in Rochester, MN, or who have joined the cohort after seeking consultation Mayo Clinic Ovarian Cancer To understand the etiology, natural history, and 1,398 Females (20 years old) diagnosed with Adult ovarian cancer patients Unable to ascertain Study outcomes associated with ovarian cancer ovarian cancer and treated at the Mayo Clinic in Rochester, MN North Carolina Prostate To examine comparative outcomes among different 1,656 Males (35–80 years old) were identified Adult prostate cancer patients Enrollment complete Cancer Comparative modern prostate cancer treatment options in this using Rapid Case Ascertainment of the Effectiveness & cohort of patients North Carolina Central Cancer Registry. Survivorship Study (NC Participants were ineligible if they ProCESS) started treatment, could not be reached, did not speak English, or if physician refused to allow patient contact (Continued on the following page) www.aacrjournals.org Table 4. Study aims and general information for included cancer survivor epidemiology cohorts (Cont'd )

Downloaded from Cohort Aims Sample size Eligibility Population Recruitment Population-based Cohort of (i) To investigate the incidence of long-term 2,648 Females (18 years old) diagnosed with Adult endometrial cancer Enrollment complete Endometrial Cancer health effects due to endometrial cancer endometrial cancer from 1997 to 2012 survivors Survivors in Utah treatment in Utah (ii) To assess the feasibility of administering questionnaires to assess lifestyle factors in a sample of the endometrial cancer survivors and cancer-free women cebp.aacrjournals.org

(iii) To determine the feasibility of collecting Published OnlineFirstJuly17,2019;DOI:10.1158/1055-9965.EPI-18-0541 detailed cancer treatment information such as chemotherapy agents from medical records by conducting medical record abstraction among a sample of patients with endometrial cancer (iv) To compare the quality of information obtained from the existing records and the self-report from the questionnaire on late effects, comorbidities, and cancer treatment Prostate Cancer Follow-up To identify molecular, epidemiologic, and clinical 1,201 Males (18 years old) diagnosed with Adult prostate cancer patients Enrollment complete on October 1,2021. ©2019 American Association forCancer Research. Cohort markers related to prostate cancer progression in a prostate cancer enrolled in prior multiethnic cohort of prostate cancer patients studies for which baseline clinic and epidemiologic information has already been collected Prostate Cancer Outcomes To assess longitudinal changes in HRQOL and 1,201 Males (18 years old) with previously Adult prostate cancer survivors Enrollment complete and Satisfaction with patient/spouse satisfaction with processes of care untreated T1 or T2 prostate cancer who Treatment Quality among men with early-stage prostate cancer elected prostatectomy, external beam Assessment (PROST-QA) treated primarily with local therapy radiotherapy or brachytherapy treatments. Participants were enrolled from 2003 to 2006 at 9 hospitals Sleep, Inﬂammation, and (i) Determine the association between sleep 300 Females (55 years old) diagnosed with Adult breast cancer survivors Enrollment complete Depression Occurrence in disturbance and depression occurrence early-stage breast cancer and age- Breast Cancer Survivors (ii) Evaluate the association between sleep matched comparison women who are acrEieilBoakr rv 81)Otbr2019 October 28(10) Prev; Biomarkers Epidemiol Cancer

disturbance and cellular and genomic markers community members of the Kaiser Studies Cohort Survivor Cancer of Scan Environmental of inflammation Permanente Southern California (iii) Examine the relationship between sleep disturbance, markers of inflammation, and depression occurrence Southern Community (i) Measure breast cancer–specific physical and 577 Females diagnosed with breast cancer Adult breast cancer survivors Enrollment complete Cancer Survivorship functional limitations and symptoms among previously enrolled in the Southern Study African American, poor, and medically Community Cohort Study underserved breast cancer survivors (ii) Measure physical and functional well-being/ QoL among African American, poor, and medically underserved breast cancer survivors (iii) Determine the contributions of comorbidity and barriers to health care utilization on breast cancer–specific physical and functional limitations/symptoms and QoL among African American, poor, and medically underserved breast cancer survivors Studies of Populations To evaluate the risk of radiation-related and Unable to Unable to ascertain Cancer survivors Unable to ascertain Exposed to Therapeutic chemotherapy-related second cancers ascertain Medical Radiation and Other Agents

1637 (Continued on the following page) Published OnlineFirst July 17, 2019; DOI: 10.1158/1055-9965.EPI-18-0541

Krok-Schoen et al.

particular interest to those interested in health disparities. Fur- thermore, individuals interested in health disparities should understand that where people live including, but not limited to, their environment, community cohesiveness, and healthcare access impact their health (44). Future research should take a broader, macro-level approach to cancer survivors' social envi-

Recruitment ronment, including sources of support, and geographic surround- ings to develop strategies that can be implemented to better address individual needs accordingly. An area of growth that was observed in this study is the proliferation of research using biospecimens and biomarkers. Biomarkers provide an objective approach to understanding the etiology of both side effects, long-term effects and survival with applications in observational and analytic epidemiology, ran- domized clinical trials, screening, diagnosis, and prognosis (45). Disadvantages of biomarker research such as cost, timing, and storage, may have deterred many cancer survivor cohort studies Head/neck cancer survivors Unable to ascertain Adult female cancer survivors Enrollment complete Population from collecting biospecimens for biomarker research. Transdis- ciplinary research is needed to link basic clinical research with psychosocial research to better understand how these areas are related. For example, which survivors are likely to respond more favorably to certain treatments or have side effects from therapies as determined (46). To address these research gaps regarding biospecimens, social factors, and CAM, future research should consider utilizing a multilevel approach, such as the Multi-level Biological and Social Integrative Construct (MBASIC; ref. 47), which encourages transdisciplinary collaborations to streamline intervention, implementation, and translation efforts. Finally, there is a need for having the same types of data neck cancer treated with radiotherapy in active follow-up and were subsequently diagnosed with breast, lung, colorectal, endometrial, ovarian, fallopian, primary peritoneal, melanoma, or non-Hodgkin lymphoma Males and females diagnosed with head/ Females part of the original WHI and still collected in a parallel sample of similar individuals without cancer and across studies for more efﬁcient data pooling. Wider use of standardized instruments such as those used in population-based samples (e.g., NHANES) would support comparisons within and between survivor cohorts and population-based samples and help to put into perspective the needs/experiences of cancer survivors. 60 Sample size Eligibility 9,934 In addition, efforts to harmonize validated measures and assessment tools (e.g., SF-36, CES-D) for use among cancer survivors would facilitate pooling data across studies for future research.

Limitations This study had several limitations. First, the data gathered about cohort studies that did not respond to the survey was based on available data, which may not have been as comprehensive or coded with the same detail as data provided by survey respondents. Because of the low rates of response to the surveys, study authors cit and xerostomia and taste utilized internet searches and online databases to gather information regarding cohorts that were nonrespondents. These websites were best source of study information for currently ongoing cohorts. Second, results were limited to the search terms and xed tumor tissue oropharyngeal pain and dysphagia atconclusion the of medical treatment and6 up months to posttreatment swallowing de fi loss up to 6 monthstreatment following medical dysphagia based on resolution of fear-avoidance strategies that contribute to reduced movement and outcomes fi data to capture treatment and recurrence data phrases used to identify cohorts in the PubMed and MEDLINE (i) To evaluate relationships between (i) Collecting information on cancer treatment literature review as well as the NIH RePORTER query; additional (ii) To evaluate relationships between severity of (ii) Expanding the WHI biorepository by collecting (iii) To evaluate a novel intervention approach to (iii) Evaluating the ability to use administrative Aims To build a CSC infrastructure in WHI by: terms may have identified additional studies, including clinical trials, which may have provided psychosocial, symptom, and biospecimen data from participants. New studies that have yet to publish would likely have been missed. This study also only included U.S.-based cohorts, which limits the generalizability of study findings. Finally, the internet-based questionnaire was most- ly close-ended to facilitate data collection and reporting; however, Study aims and general information for included cancer survivor epidemiology cohorts (Cont'd ) domains not included in the questionnaire were excluded from this report limiting the ability to fully characterize the breadth of morbidities in radiation- treated head/neck cancer survivors (WHI) Cancer Survivor Cohort (CSC) Swallow function and oral Cohort Table 4. Women's Health Initiative information collected across all cancer survivor cohorts.

1638 Cancer Epidemiol Biomarkers Prev; 28(10) October 2019 Cancer Epidemiology, Biomarkers & Prevention

Environmental Scan of Cancer Survivor Cohort Studies

Table 5. Reported scales included by cohort respondents (N ¼ 28)a Cohort study Scales utilized A Longitudinal Assessment of Frailty in Young Adult Survivors of Seven-day physical activity diary or recall (PAR); Block Food Frequency Questionnaire (FFQ); Childhood Cancer Behavior Risk Factor Surveillance System (BRFSS); Epworth Sleepiness Scale; National Health Interview Survey; NHIS Adult Tobacco Use Questionnaire; NHANES; Pittsburgh Sleep Quality Index (PSQI); SF-36 American Cancer Society Study of Cancer Survivors-I BRFSS; Cancer Related Problems in Living Scale; CES-D; FACIT- Spiritual Wellbeing Scale; Fear of Cancer Recurrence Inventory; fruit and vegetable intake; Life Orientation Test- Revised (LOT-R); Medical Outcomes Study Short-form and subscales; Medical Outcomes Study general short form Health Survey (SF-20, SF-36); Multidimensional Scale of Perceived Social Support; NHANES; National Health Interview Survey; PSQI; Profile of Mood States (POMS); POMS-DD; Rosenberg Self-Esteem Scale (RSES); Religious Coping Activity Scale (RCAS); Satisfaction with Life Domain Scale; SF-12; SF-36; Tobacco Use Questionnaire Antidepressants and Breast Cancer Pharmacoepidemiology Seven-day PAR; Beck Anxiety Inventory and associated scales; Beck Depression Inventory; Center for Epidemiologic Studies Depression Scale (CES-D); Mindfulness-Based Efficacy Scale (MSES-R); Perceived Stress Scale and associated measures; Perceived Stress Questionnaire (PSQ); SF-12; UCLA Loneliness Scale (R-UCLA, ULS-20, ULS-4) ARIC-Ca (Cancer component of the ARIC study) Activities of Daily Living (ADL); Baecke Activity Questionnaire (BAQ); Harvard Food Frequency Questionnaire; Instrumental Activities of Daily Living (IADL); SF-12 Black Women's Health Study The Coping Self Efficacy Scale (CSES); CES-D; Harvard Food Frequency Questionnaire Perceived Stress Scale and associated measures; PROMIS; SF-12 Breast and Colon Cancer Family Registries Brief Adult Assessment Scale; Cancer Worry Scale (CWS or CWS-B); Food Frequency Questionnaire Cancer Epidemiology Cohort in Male Health Professionals One-item depression screener; Harvard Food Frequency Questionnaire Cancer of the Prostate Strategic Urologic Research Endeavor Harvard Diet and Lifestyle; Harvard Food Frequency Questionnaire; Karnofsky Performance Status; Medical Outcomes Study (MOS) General Short-Form Health Survey (SF-20, SF-36); Tobacco Use Questionnaire Childhood Cancer Survivor Study Brief Symptom Inventory 18 (BSI-18); Childhood Cancer Survivor Study (CCSS) Neurocognitive Questionnaire; Food Frequency Questionnaire; MOS General Short-Form Health Survey (SF-20, SF-36); National Health Interview Survey; NHIS Adult Physical Activity; NHANES Tobacco Questionnaire; PSQI; SF-36 Cognition in Older Breast Cancer Survivors: Treatment Exposure, Bidimensional Acculturation Scale for Hispanics; CES-D; Fatigue Symptom Inventory; APOE, and Smoking Instrumental Activities of Daily Living; MOS General Short-Form Health Survey (SF-20, SF- 36); NHANES Tobacco Questionnaire; Patient's Assessment of Own Functioning (PAOF); Self-Support Daily Alcohol Diary; State Trait Anxiety Inventory; UCLA Loneliness Scale (R-UCLA, ULS-20, ULS-4) ColoCare-Study: Transdisciplinary Research in Colorectal Cancer APPEAL; Community Healthy Activities Model Program for Seniors (CHAMPS) Activities Prognosis Questionnaire for Older Adults; EHRICHD Social Support Inventory (ESSI); Food Frequency Questionnaire; MOS General Short-Form Health Survey (SF-20, SF-36) Determinants of Late Cardiovascular Morbidity Among Survivors Fruit and vegetable intake; NHANES; NHANES Tobacco Questionnaire; NHIS Adult Physical of Hematopoietic CE Activity Diet and Lifestyle in a Prospective Study of Bladder Cancer Food Frequency Questionnaire Survivors Emotion Regulation and Depression in Breast Cancer Survivorship CES-D; Composite International Diagnostic Interview; COPE/MCOPE; Coping Self-Efficacy Scale; Decisional Engagement Scale (DES); Difficulties in Emotion Regulation Scale (DERS); Distress-Recurrence Subscale of the Quality of Life in Adult Cancer Survivors Scale (DRS-QLACS); GAD-7 scale; NEO Five-Factor Inventory; PHQ-9; PSQI; Rosenberg Self- Esteem Scale (RSES); UCLA Loneliness Scale (R-UCLA, ULS-20, ULS-4); WHI Insomnia Rating Scale and Medical Outcomes Epidemiology of Cancer in a Cohort of Older Women. Ancillary Harvard Food Frequency Questionnaire; IADL; MOS Short-Form and subscales; MOS General study to Iowa Women's Health Study Short-Form Health Survey (SF-20, SF-36) Improving the Care and Outcomes of Women Undergoing Breast Functional Assessment of Cancer Therapy-Breast Cancer (FACT-B); SF-12 Surgery Long-Term Multidisciplinary Study of Cancer in Women: The ADL; Berkman-Syme Social Integration; CES-D; Crown-Crisp Anxiety Scale; daytime Nurse's Health Study sleepiness scale; GAD-7 scale; Geriatric Depression Scale (GDS); Harvard Food Frequency Questionnaire; Life Orientation Test-Revised (LOT-R); MOS General Short-Form Health Survey (SF-20, SF-36); Mental Health Inventory-5 (MHI-5); SF-36; SPI; Tobacco Use Questionnaire Patient Decision Making about Breast Reconstruction after Breast-Q Mastectomy Pediatric Cancer, Family Conflict, and Child Adjustment Child Behavior Checklist; CES-D; Pediatric Quality of Life Inventory (PedsQL); Responses to Stress Questionnaire (RSQ); State Trait Anxiety Inventory (STAI) Project REACH BSI-18; Beck Youth Inventories (BYI)-Anxiety; Children's Sleep Habits Questionnaire; PedsQL; PSQI; SF-12; Swedish Health-Related Quality of Life Survey (SWED) Prospective Study of the Impact of Breast Cancer on Symptoms Baecke Activity Questionnaire; Block FFQ; CES-D; Childhood Trauma Questionnaire (CTQ); and Functioning GAD-7 scale; Life Orientation Test; MOS Short-Form and subscales; MOS General Short-Form Health Survey (SF-20, SF-36); Perceived Stress Scale and associated measures; PSQI; Positive and Negative Affect Schedule (PANAS); Ryff Psychological Well Being (RPWB) Scales; Satisfaction with Life scale (SWLS); SF-36; State Trait Anxiety Inventory (Continued on the following page)

www.aacrjournals.org Cancer Epidemiol Biomarkers Prev; 28(10) October 2019 1639

Krok-Schoen et al.

Table 5. Reported scales included by cohort respondents (N ¼ 28)a (Cont'd ) Cohort study Scales utilized Prostate Active Surveillance Study (PASS) EDRN; Expanded Prostate Cancer Index Composite-26 (EPIC-26); Food Frequency Questionnaire; International Prostate Symptom Score (IPSS); Memorial; SF-12 Prostate Cancer Outcomes Study SF-36 Reducing Racial/Ethnic Inequities in Childhood Cancer Acculturation Rating Scale for Mexican Americans (ARSMA); CES-D; Life Orientation Test- Survivorship Revised (LOT-R); Mental Health Continuum Short-Form (MHC-SF) The Reproductive Window Study in Young Adult Cancer Survivors Condom use self-efﬁcacy; GAD-7 scale; Multidimensional Scale of Perceived Social Support; National Institute on Alcohol Abuse and Alcoholism (NIAAA) Alcohol Consumption Questions; PHQ-9; Perceived Stress Scale and associated measures; WHO Smoking Questionnaire The Young Women's Breast Cancer Study Cancer Rehabilitation Evaluation System questionnaire (CARES) body image subscale; CARES Sexual Functioning; The COPE instrument; Fear of Recurrence Index (FRI); Fertility Issues Survey; Hospital Anxiety and Depression Scale; MOS Short-Form and subscales; MOS Social Support; MOS General Short-Form Health Survey (SF-20, SF-36); Nurses' Health Study Physical Activity Survey; PTSD Checklist (PCL); SF-36 UNC Health Registry/Cancer Survivorship Cohort Functional Assessment of Cancer Therapy-Cognitive Function (FACT-COG); FACT General Population; Global Physical Activity Questionnaire; NHANES Tobacco Questionnaire; NHIS- Adult Tobacco Use Questionnaire; PROMIS; PROMIS Global; PROMIS PSxFBP; PSQ 18 Urinary Diversion Among Bladder Cancer Survivors: Cost, ADL; Bladder Cancer Index; Body Image Scale (BIS); City of Hope Quality of Life; EQ-5D Complications, and QOL aSome survey respondents did not include information regarding the validated scales used in the cohort studies.

Conclusions Analysis and interpretation of data (e.g., statistical analysis, biostatistics, computational analysis): J. Peng, E.D. Paskett In summary, cancer survivorship research continues to grow as Writing, review, and/or revision of the manuscript: J.L. Krok-Schoen, has the population of survivors (2, 3). Researchers have many B.M. Bernardo, J.W. Elena, P.A. Green, E. Hoover, J. Peng, G.L. Anderson, opportunities to explore the myriad of issues survivors of all B. Caan, L. Johnson, E.D. Paskett cancers experience. To maximize the opportunity to address the Administrative, technical, or material support (i.e., reporting or organizing data, constructing databases): J.L. Krok-Schoen, J.W. Elena, E.D. Paskett needs among cancer survivors, future research should include Study supervision: E.D. Paskett survivors of other types of cancers in addition to breast cancer and collect information about understudied areas including biospecimens/biomarkers and social and environmental factors. Acknowledgments This work was supported by the Supplement to the Women's Health Disclosure of Potential Conflicts of Interest Initiative Life and Longevity After Cancer (LILAC) grant (UM1CA173642). E.D. Paskett reports receiving other commercial research support from Merck Foundation and has ownership interest (including patents) in Pfizer. No The costs of publication of this article were defrayed in part by the potential conflicts of interest were disclosed by the other authors. payment of page charges. This article must therefore be hereby marked advertisement in accordance with 18 U.S.C. Section 1734 solely to indicate Authors' Contributions this fact. Conception and design: J.L. Krok-Schoen, J.W. Elena, E.D. Paskett Development of methodology: J.L. Krok-Schoen, J.W. Elena, E.D. Paskett Acquisition of data (provided animals, acquired and managed patients, Received May 16, 2018; revised July 25, 2018; accepted July 10, 2019; provided facilities, etc.): J.L. Krok-Schoen, B.M. Bernardo published first July 17, 2019.

References 1. National Cancer Institute. About survivorship research: survivorship 8. Jacobsen PB, Rowland JH, Paskett ED, Van Leeuwen F, Moskowitz CS, definitions. Available from: https://cancercontrol.cancer.gov/ocs/statis Katta S, et al. Results of the ASCO survey of cancer survivorship research: tics/definitions.html. summary and implications. J Clin Oncol 33:15s, 2015 (suppl; abstr 2. American Cancer Society. Cancer facts & figures 2018. Atlanta, GA: Amer- 9567). ican Cancer Society; 2018. 9. Rowel R, Moore ND, Nowrojee S, Memiah P, Bronner Y. The utility of 3. Stanton AL. What happens now? Psychosocial care for cancer survi- the environmental scan for public health practice: lessons from an vors after medical treatment completion. J Clin Oncol 2012;30: urban program to increase cancer screening. J Natl Med Assoc 2005;97: 1215–20. 527. 4. Costanzo ES, Ryff CD, Singer BH. Psychosocial adjustment among cancer 10. Blasi PR, King D, Henrikson NB. HPV vaccine public awareness campaigns: survivors: findings form a national survey of health and well-being. an environmental scan. Health Promot Pract 2015;16:897–905. Health Psychol 2009;28:147–56. 11. Pereira-Salgado A, Mader P, Boyd LM. Advance care planning, culture and 5. Naughton MJ, Weaver KE. Physical and mental health among cancer religion: an environmental scan of Australian-based online resources. survivors: considerations for long-term care and quality of life. N C Med Aust Health Rev 2018;42:152–63. J 2014;75:283–6. 12. Bednar EM, Walsh MT, Baker E, Muse KI, Oakley HD, Krukenberg RC, et al. 6. Elena JW, Travis LB, Simonds NI, Ambrosone CB, Ballard-Barbash R, Bhatia Creation and implementation of an environmental scan to assess cancer S, et al. Leveraging epidemiology and clinical studies of cancer outcomes: genetics services at three oncology care settings. J Genet Couns 2018;16: recommendations and opportunities for translational research. J Natl 1–5. Cancer Inst 2012;105:85–94. 13. Harris PA, Taylor R, Thielke J, Payne J, Gonzalez N, Conde JG. Research 7. Harrop JP, Dean JA, Paskett ED. Cancer survivorship research: a review of electronic data capture (REDCap)-a metadata-driven methodology and the literature and summary of current NCI-designated cancer center pro- workflow process for providing translational research informatics support. jects. Cancer Epidemiol Biomarkers Prev 2011;20:2042–7. J Biomed Inform 2009;42:377–81.

1640 Cancer Epidemiol Biomarkers Prev; 28(10) October 2019 Cancer Epidemiology, Biomarkers & Prevention

Environmental Scan of Cancer Survivor Cohort Studies

14. Spitzer RL, Kroenke K, Williams JB, Lowe B. A brief measure for 31. Pargament KI, Ensing DS, Falgout K, Olsen H, Reilly B, Van Haitsma K, et al. assessing generalized anxiety disorder: the GAD-7. Arch Intern Med God help me: (I): religious coping efforts as predictors of the outcomes to 2006;166:1092–7. significant negative life events. Am J Community Psychol 1990;18: 15. Hormes JM, Lytle LA, Gross CR, Ahmed RL, Troxel AB, Schmitz KH. The 793–824. body image and relationships scale: development and validation of a 32. Zimet GD, Dahlem NW, Zimet SG, Farley GK. The multidimensional scale measure of body image in female breast cancer survivors. J Clin Oncol of perceived social support. J Pers Assess 1988;52:30–41. 2008;26:1269–74. 33. Shinar D, Gross C, Bronstein K, Licata-Gehr EE, Eden DT, Cabrera AR, et al. 16. Radloff LS. The CES-D scale: a self-report depression scale for research in Reliability of the activities of daily living scale and its use in telephone the general population. Appl Psychol Meas 1977;1:385–401. interview. Arch Phys Med Rehabil 1987;68:723–8. 17. Simard S, Savard J. Fear of Cancer Recurrence Inventory: development and 34. Wanberg KW, Horn JL, Foster FM. A differential assessment model for initial validation of a multidimensional measure of fear of cancer recur- alcoholism. The scales of the Alcohol Use Inventory. J Stud Alcohol 1977; rence. Support Care Cancer 2008;17:241–51. 38:512–43. 18. Peplau LA, Cutrona CE. The revised UCLA Loneliness Scale: concur- 35. Armstrong T, Bull F. Development of the world health organization global rent and discriminant validity evidence. J Pers Soc Psychol 1980;39: physical activity questionnaire (GPAQ). J Public Health 2006;14:66–70. 472–80. 36. Johns MW. A new method for measuring daytime sleepiness: the Epworth 19. McNair DM, Lorr M, Droppleman LF. Manual for the profile of mood sleepiness scale. Sleep 1991;14:540–5. states. San Diego, CA: Educational and Industrial Testing Service; 37. Goodman LA, Corcoran C, Turner K, Yuan N, Green BL. Assessing trau- 1981. matic event exposure: general issues and preliminary findings for the 20. Eysenck SBG, Eysenck HJ, Barrett P. A revised version of the psychoticism Stressful Life Events Screening Questionnaire. J Trauma Stress 1998;11: scale. Person Individ Diff 1985;6:21–9. 521–42. 21. Caprara GV, Alessandri G, Eisenberg N, Kupfer A, Steca P, Caprara MG, 38. Bernstein DP, Fink L. Childhood Trauma Questionnaire: a retrospective et al. The positivity scale. Psychol Assess 2012;24:701–12. self-report manual. San Antonio, TX: The Psychological Corporation; 22. Broadbent DE, Cooper PF, FitzGerald P, Parkes KR. The Cognitive Failures 1998. Questionnaire (CFQ) and its correlates. Br J Clin Psychol 1982;21:1–16. 39. Mao JJ, Palmer CS, Healy KE, Desai K, Amsterdam J. Complementary and 23. Cohen S, Kamarck T, Mermelstein R. A global measure of perceived stress. alternative medicine use among cancer survivors: a population-based J Health Soc Behav 1983;24:385–96. study. J Cancer Surviv 2011;5:8–17. 24. Weathers FW, Litz BT, Herman DS, Huska JA, Keane TM. The Posttraumatic 40. Baumi JM, Chokshi S, Schapira MM, Im EO, Li SQ, Langer CJ, et al. Stress Disorder Checklist (PCL): reliability, validity, and diagnostic utility. Attitudes and beliefs regarding complementary and alternative medicine Paper presented at the 9th Annual Conference of the International Society impact its use among patients with cancer? A cross-sectional survey. Cancer for Traumatic Stress Studies; 1993; San Antonio, TX. 2015;121:2431–8. 25. Ware JE Jr, Sherbourne CD. The MOS 36-item short-form health survey (SF- 41. Lim JW, Gonzalez P, Wang-Letzkus MF, Ashing-Giwa KT. Understanding 36): I. Conceptual framework and item selection. Med Care 1992;30:473–83. the cultural health belief model influencing health behaviors and health- 26. Huebner ES, Dew T. Validity of the perceived life satisfaction scale. related quality of life between Latina and Asian-American breast cancer School Psychol Int 1993;14:355–60. survivors. Support Care Cancer 2009;17:1137–47. 27. Chen G, Gully SM, Eden D. Validation of a new general self-efficacy scale. 42. Campesino M. Exploring perceptions of cancer care delivery among Organ Res Methods 2001;4:62–83. older Mexican American adults. Oncol Nurs Forum 2009;36:413–20. 28. Rosen R, Brown C, Heiman J, Leiblum S, Meston C, Shabsigh R, et al. The 43. Kagawa-Singer M, Dadia AV, Yu MC, Surbone A. Cancer, culture, and Female Sexual Function Index (FSFI): a multidimensional self-report health disparities: time to chart a new course? CA Cancer J Clin 2010;60: instrument for the assessment of female sexual function. J Sex Marital 12–39. Ther 2000;26:191–208. 44. Paskett ED. The new vital sign: where do you live? Cancer Epidemiol 29. Cella D, Yount S, Rothrock N, Gershon R, Cook K, Reeve B, et al. The Biomarkers Prev 2016;25:581–2. Patient-Reported Outcomes Measurement Information System (PRO- 45. Kumar S, Mhan A, Guleria R. Biomarkers in cancer screening, research and MIS): progress of an NIH Roadmap cooperative group during its first two detection: present and future: a review. Biomarkers 2006;11:385–405. years. Med Care 2007;45:S3–11. 46. Collins FS, Varmus H. A new initiative on precision medicine. N Eng J Med 30. Krieger N, Smith K, Naishadham D, Hartman C, Barbeau EM. Experiences 2015;372:793–5. of discrimination: validity and reliability of a self-report measure for 47. Lynch SM, Rebbeck TR. Bridging the gap between biologic, individual, population health research on racism and health. Social Sci Med 2005; and macroenvironmental factors in cancer: a multilevel approach. 61:1576–96. Cancer Epidemiol Biomarkers Prev 2013;22:485–95.

www.aacrjournals.org Cancer Epidemiol Biomarkers Prev; 28(10) October 2019 1641

An Environmental Scan of Biopsychosocial and Clinical Variables in Cohort Studies of Cancer Survivors

Jessica L. Krok-Schoen, Brittany M. Bernardo, Joanne W. Elena, et al.

Cancer Epidemiol Biomarkers Prev 2019;28:1621-1641. Published OnlineFirst July 17, 2019.

Updated version Access the most recent version of this article at: doi:10.1158/1055-9965.EPI-18-0541

Cited articles This article cites 41 articles, 6 of which you can access for free at: http://cebp.aacrjournals.org/content/28/10/1621.full#ref-list-1

E-mail alerts Sign up to receive free email-alerts related to this article or journal.

Reprints and To order reprints of this article or to subscribe to the journal, contact the AACR Publications Department Subscriptions at [email protected].

Permissions To request permission to re-use all or part of this article, use this link http://cebp.aacrjournals.org/content/28/10/1621. Click on "Request Permissions" which will take you to the Copyright Clearance Center's (CCC) Rightslink site.