Abstract
An inventory of cancer survivorship cohorts is necessary to identify important gaps in what is being studied among cancer survivors.
We conducted an environmental scan of cancer survivor cohorts to determine the scope and scale of information collected on demographic, biopsychosocial, and selected clinical variables from cancer survivors. Cohorts were eligible for inclusion in the environmental scan if the study was conducted in the United States, reported in English, and consisted of data collected from cancer survivors postdiagnosis and followed for at least 1 year.
Out of the 131 cohorts identified, 62 were eligible. There were 23 cancer sites represented, and more than half of the studies included breast cancer survivors (n = 34). The next most commonly included cancers were leukemia (n = 22) and lymphoma (n = 23). The majority (n = 59) collected information on clinical characteristics and basic diagnostic information, patient demographic characteristics (n = 57), patient-reported symptoms (n = 44), lifestyle (n = 45), and psychologic characteristics (n = 42). Half collected biospecimens (n = 35) and biomarkers (n = 35); fewer collected CAM use (n = 19) and social characteristics (n = 27).
Extensive data are available in cancer cohorts to study important questions relevant to cancer survivors. Cohorts should consider collecting information on social and environmental factors, as well as biospecimen collection and biomarker analyses, and should include survivors from cancer sites less likely to be studied.
This information can assist researchers in understanding the types of information currently being gathered from cancer survivors for further analysis and identify areas where more research is needed.
Introduction
According to the National Cancer Institute's (NCI) Office of Cancer Survivorship, “an individual is considered a cancer survivor from the time of diagnosis, through the balance of his or her life (1).” Recent estimates indicate that 15.5 million people in the United States are cancer survivors, and the number of cancer survivors will increase over the next few years as the probability of survival after a cancer diagnosis continues to improve (1, 2). As the number of cancer survivors increases, it is becoming more important to assess the short- and long-term consequences of 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 biomarkers (e.g., cortisol, inflammatory markers) relate to these psychosocial outcomes (4, 5).
Although medical research is expanding to address the psychosocial and behavioral challenges experienced following a cancer diagnosis, these data are often collected from cross-sectional and retrospective studies, limiting the inference that can be derived from them. As summarized by Elena and colleagues (6), few existing cohort studies were designed with the ability to examine the role of behavioral, psychologic, and social contextual factors on health outcomes after a cancer diagnosis. Therefore, a rigorous, multidisciplinary approach is needed to capture the full breadth of cancer survivors' experiences in prospective longitudinal studies and identify the gaps among these studies.
A 2011 paper by Harrop and colleagues (7) provided a review of current cancer survivorship research efforts and a summary of current survivorship research at NCI-designated Cancer Centers. They found that all cancer types required more attention from the research community and encouraged focus on late effects of treatment among cancer survivor cohorts (7). In 2015, the American Society of Clinical Oncology (ASCO) Survivorship Committee identified the need to better understand the current scope of cancer survivorship research to identify future research opportunities (8). They surveyed ASCO members and found key gaps in current cancer survivorship research including several common cancers (e.g., colorectal, prostate, lung), long-term survivors, older and younger survivors, and on survivorship care delivery and quality (8).
A centralized inventory of information gathered from cancer survivor epidemiology cohorts is needed to provide researchers with the behavioral and psychosocial antecedents associated with short- and long-term outcomes after the completion of cancer treatment. The first step is to examine the domains of measures and use of validated scales in cancer survivor cohorts. Thus, we conducted an environmental scan of cancer survivor cohorts, to determine the scope and scale of information collected on demographic, biopsychosocial, and selected clinical variables from cancer survivors. Environmental scans utilize a variety of approaches (e.g., literature review, a targeted survey) to determine and interpret the scope of the pertinent literature on a particular health outcome (9–12). This methodology is beneficial in the study of cancer survivors cohorts given the breadth of variables considered in cancer survivorship. These results will aid researchers in understanding the types of information currently available from cancer survivors, help identify gaps that future studies could address, and encourage future research opportunities for collaborative data pooling projects.
Methods
Study design
Cancer epidemiology cohort studies with data collected on cancer survivors were identified and surveyed to assess which psychologic characteristics, social context, patient demographics, patient clinical and diagnostic information, comorbidities, medication use, lifestyle, biomarkers, biospecimens, patient-reported symptoms, and clinical treatment information have been collected.
Cohort identification
Cohort studies were included if they met the following criteria: (i) data for cancer survivors were collected at least once in the time period following cancer diagnosis, and (ii) the follow-up period for cancer outcomes was at least one year. Only studies conducted in the United States and published in English were considered. Cohort studies that were (i) solely focused on cancer screening or cancer etiology and risk factors of cancer incidence, or (ii) a registry database, biorepository, consortium, or web-based support forums/programs/message boards without follow-up data were excluded. Eligibility assessment of these cohorts was performed by two reviewers (J.L. Krok-Schoen and B.M. Bernardo).
Using these eligibility criteria, we conducted a literature review of the cancer survivorship literature using the PubMed and MEDLINE databases, limited to original research in English and cohorts that were active as of October 30, 2015. Reference lists of identified articles were reviewed for potentially eligible studies. We searched the PubMed database using key words “cancer survivor” combined with each of the following terms: “psychologic,” “psychosocial,” “health behavior,” “health outcomes,” “quality of life,” “social determinants,” “lifestyle,” “late effects,” and “long-term effects”. A separate PubMed and MEDLINE search was conducted for the key words “cancer survivorship” in the title or abstract.
The investigators then reviewed the studies to identify active cancer survivor epidemiology cohorts collecting behavioral, psychologic, and social context data. Queries were also made using the NIH RePORTER (https://projectreporter.nih.gov/reporter.cfm), the Cancer Epidemiology Descriptive Cohort Database (CEDCD; https://cedcd.nci.nih.gov/), and NCI Cohort Consortium (http://epi.grants.cancer.gov/Consortia/cohort.html) tools to identify additional cancer survivor epidemiology cohorts that may not have been captured in the literature review, by searching for currently funded projects in the United States using the key word, “survivor” (Fig. 1).
Survey administration
A web-based REDCap (13) survey was developed to assess behavioral, psychologic, social, biomarker, biospecimen, patient symptoms and comorbidities, and clinical treatment information collected in the identified cohorts, as well as the method of measurement and source of metadata for these variables. The web-based survey was modeled after an earlier survey (9) used to collect information about cancer survivor cohorts for a different purpose.
Principal investigators (PI) or project representatives (identified by the PI as the staff person who is most knowledgeable about the project) of the identified cancer survivor epidemiology 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 concerns, and provided a link to the web-based survey. Potential project representatives were asked to complete and return the web-based survey within 1 month. A reminder e-mail was sent two weeks after the initial study email, a third reminder e-mail in December 2015, and a final fourth e-mail 1 month later. Two telephone calls were also made to reach the nonresponders. After the sixth attempt to contact, those potential respondents were considered “nonresponders.” Study information was gathered for 24 nonrespondents from online searches of PubMed articles and websites including NIH RePORTER, clinicaltrials.gov, epi.grants.cancer.gov, grantome.com, fundedresearch.cancer.gov, epi.grants.cancer.gov, pcori.org, and the nonresponder's institution/study website. Sources of abstracted study information were the abstracts of grants, methods, and results sections of peer-reviewed publications, and study summaries posted on study websites.
Measures
The REDCap survey asked whether the following domains were collected in the cohort: psychologic characteristics, social context, patient demographics, patient clinical and diagnostic information, patient-reported symptoms, comorbidities, medication use, complementary and alternative medicine (CAM) use, lifestyle, biospecimens, and biomarkers processed from biospecimens. Each domain is further described below.
Psychologic domain.
Respondents to the online surveys were asked to identify (yes/no) which psychologic constructs and common validated scales were collected in their respective cohort study. Surveyed participants were provided with validated scales measuring specific psychologic constructs and were asked to select any validated scales used to collect information from cancer survivors. Examples of psychologic constructs and validated scales used to measure each construct include: anxiety (14), body image (15), depression (16), fear of cancer recurrence/cancer worry (17), loneliness (18), mood/affect (19), neuroticism (20), optimism (21), perceived cognitive ability (22), perceived stress (23), posttraumatic stress disorder (24), quality of life (25), satisfaction (26), self-efficacy (27), sexual functioning/fertility issues (28), and well-being PROMIS (29).
Social domain.
Social constructs were identified by asking respondents to select (yes/no) which common validated scales associated with those items were collected from their respective cohort study. Surveyed participants were provided with a number of validated scales measuring these social constructs and were asked to select any validated scales they used when collecting information from cancer survivors. Social constructs included but were not limited to discrimination (30), financial hardship, natural, and built environment characteristics, religiosity (31), social support (32), and survivor caregiving issues.
Patient demographics.
The administered surveys assessed types of demographic information collected within cohorts. Participants were asked (yes/no) which survivor demographic data were collected in their cancer survivor cohort study, including survivor age, country of origin, educational attainment, ethnicity, family history of cancer, health insurance status, household size, income, marital status, number of children, occupation, primary language, race, sex, sexual orientation, time spent at current residence, type of residence, U.S. citizen status, and veteran status.
Patient clinical and diagnostic information.
To determine which patient clinical characteristics and diagnostic information were collected in the cohort studies, the survey asked which of the following clinical information was collected: cancer stage, grade and type, receipt of chemotherapy, diagnosis date, diagnostic tests, follow-up period, functional status, palliative/end-of-life care, provider information, recurrence, second cancer, time from diagnosis to treatment, treatment type, tumor location, markers, node, size, HPV vaccine receipt, and use of health care services.
Patient-reported symptoms.
The survey also evaluated the types of symptom data that cohort studies collected from participants. Symptom data included a myriad of symptoms that are commonly reported among cancer survivors, included but not limited to aching joints, appetite change, coughing/wheezing, difficulty breathing, concentrating, sleeping, and swallowing, drowsiness, fatigue, fever, hair loss, headaches/migraines, hearing change, irritability, nausea, night sweats, nerve problems, neuropathy, pain, problems with sexual functioning/interest/activity, swelling of limbs/hands/feet, urinary/bowel incontinence, vaginal/genital irritation/dryness, vision problems, vomiting, and weight gain/loss.
Comorbidities.
Surveyed PIs or study representatives were asked (yes/no) which patient comorbidity data were collected in their cancer survivor cohort study. Comorbidity data included conditions commonly reported among cancer survivors, including but not limited to angina, diabetes, emphysema, frequent infections, generalized anxiety disorder, heart or coronary artery disease, high cholesterol, hypertension, kidney disease, major depressive disorder, osteoarthritis, osteoporosis, rheumatoid arthritis, second primary cancer diagnosis, skin disorders, and vascular disorders.
Medication use.
The survey assessed whether medication data were collected from PIs or study representatives. Information regarding names of medications, dosage information, immunization history, medication adherence, medication side effects, prevalence/mean number of any medications and prescription medications, therapeutic category, and types of medications were collected.
Complementary and alternative medicine.
Respondents to the surveys indicated whether information on complementary and alternative medicine (CAM) therapies were collected in their cancer survivor cohort study. Several CAM therapies were considered, such as acupuncture, aromatherapy, biofeedback, chiropractic or deep breathing exercises, diet-based therapies, hypnosis, massage, meditation, music therapy, natural products, prayer/religious practices, progression relaxation, qi gong, reflexology, supplements, tai chi, and yoga.
Lifestyle domain.
The survey also determined whether cohort studies collected various lifestyle information from cancer survivors. Lifestyle information included ability to perform daily activities (33), alcohol use (34), body mass index, diet/nutrition, physical activity/exercise (35), risky sexual behaviors, self-rated status, sleeping habits (36), smoking/tobacco use, stress management (37), sun exposure, traumas/periods of hardship (38), and weight change.
Biospecimens.
To determine the extent of biospecimen data collection among cancer survivors, survey respondents indicated whether or not their study collected biospecimens from participants, and if so, which specimens were collected. Potential biospecimens could be blood, buccal cells, buffy coat, DNA, expired carbon monoxide and salivary cotinine, feces, organ tissues samples, saliva, tumor tissue samples, and urine.
Biomarkers.
Finally, the surveys asked participants to indicate which biomarkers were processed from collected biospecimens within their cohort study. Processed biomarkers included adipokines, androgen, C-reactive protein, carcinoembryonic antigen, cortisol, cotinine, epidermal growth factors receptor, estrogen, fibrin, glucose, HER2/NEU, hormones, human chorionic gonadotropin-β, inflammatory markers, insulin, insulin-like growth factors, interleukin, leptin, prostate-specific antigen, serum tumor markers, sex hormone, and TNF.
Analyses
To determine the frequency of collected domains and the common validated scales, descriptive frequency tables were generated using IBM SPSS Statistical Program (Version 23).
Results
Cohort identification
The PubMed and MEDLINE searches for the key words resulted in 318 articles, 26 (8.2%) of which met the inclusion criteria. Of these, 15 (57.7%) were duplicated from what was found in the online database searches. Searches on NIH RePORTER and the NCI Cohort Consortium produced 395 and 42 studies, respectively. Out of 437 studies in these databases, 120 (27.5%) studies met the study criteria. Thus, 11 studies were identified through PubMed and MEDLINE, 120 were found in the NCI Consortium and NIH RePORTER resulting in a final sample of 131 studies identified as active cancer survivor epidemiology cohorts.
A total of 131 studies were invited to participate, of which 13 (9.9%) were ineligible for participation (e.g., study was not an epidemiologic study on cancer survivors). An in-depth review of the 118 studies was conducted and an additional 56 (47.5%) studies were excluded due to being duplicate subsets of survivor cohorts and intervention studies rather than cancer survivor epidemiology cohorts (Fig. 1). After the second review of studies, the final sample included 62 cancer survivor epidemiology cohort studies, 38 (61%) of which responded directly to the study survey and 24 (39%) of which were abstracted from online sources described above.
Table 1 provides a breakdown of studies (N = 62) by type(s) of cancer survivors studied. Out of the 62 studies that provided cancer type, 39 (62.9%) studies studied multiple types of cancer and 23 (37.1%) were single site studies. Most studies included breast cancer survivors (n = 34, 54.8%), which is considerably more than the number of studies that included other cancer sites, lymphoma and leukemia, which consisted of 23 (37.1%) and 22 (35.5%) studies, respectively. Survivors of colon or rectal cancers or Hodgkin disease were the next most researched with 21 (33.9%) and 20 (32.3%) studies, respectively. Eight (12.9%) studies focused on childhood cancer survivors.
Cancer sites included among cancer survivor epidemiology cohorts (n = 62)a
Cancer sites . | n (%) . |
---|---|
Bladder | 15 (24.2) |
Bone | 17 (27.4) |
Brain | 17 (27.4) |
Breast | 34 (54.8) |
Cervical | 12 (19.4) |
Colon or rectal | 21 (33.9) |
Esophageal | 12 (19.4) |
Gall bladder | 10 (16.1) |
Hodgkin disease | 20 (32.3) |
Kidney | 16 (25.8) |
Leukemia | 22 (35.5) |
Liver | 12 (19.4) |
Lung | 14 (22.6) |
Lymphoma | 23 (37.1) |
Oral cavity | 12 (19.4) |
Ovarian | 16 (25.8) |
Pancreatic | 12 (19.4) |
Prostate | 18 (29.0) |
Skin, melanoma | 17 (27.4) |
Stomach | 12 (19.4) |
Throat or Neck | 12 (19.4) |
Thyroid | 13 (21.0) |
Uterine, endometrial | 15 (24.2) |
Cancer sites . | n (%) . |
---|---|
Bladder | 15 (24.2) |
Bone | 17 (27.4) |
Brain | 17 (27.4) |
Breast | 34 (54.8) |
Cervical | 12 (19.4) |
Colon or rectal | 21 (33.9) |
Esophageal | 12 (19.4) |
Gall bladder | 10 (16.1) |
Hodgkin disease | 20 (32.3) |
Kidney | 16 (25.8) |
Leukemia | 22 (35.5) |
Liver | 12 (19.4) |
Lung | 14 (22.6) |
Lymphoma | 23 (37.1) |
Oral cavity | 12 (19.4) |
Ovarian | 16 (25.8) |
Pancreatic | 12 (19.4) |
Prostate | 18 (29.0) |
Skin, melanoma | 17 (27.4) |
Stomach | 12 (19.4) |
Throat or Neck | 12 (19.4) |
Thyroid | 13 (21.0) |
Uterine, endometrial | 15 (24.2) |
aCancer survivor epidemiology cohorts were not limited to collecting one cancer type.
Study type and domains
The majority of the cancer survivor epidemiology cohort studies (n = 59) collected information on clinical characteristics and basic diagnostic information. Studies also collected information on patient demographic characteristics (n = 57), patient-reported symptoms (n = 44), lifestyle (n = 45), and psychologic (n = 42) characteristics associated with health behaviors, health outcomes, and well-being. Less commonly collected information included biospecimens (n = 35), biomarkers (n = 35), CAM use (n = 19), and social characteristics (n = 27; Table 2). Survey respondents and nonrespondents' study information are combined to provide an inclusive summary of the information being gathered in currently funded cancer survivor cohorts.
Collected domains among current cancer survivor epidemiology cohorts, by response categorya
Domain . | Nonresponders, n (%) . | Responders, n (%) . |
---|---|---|
Psychologic | 14 (58.3) | 28 (73.7) |
Social | 7 (29.2) | 20 (52.6) |
Demographic | 20 (83.3) | 37 (97.4) |
Clinical | 23 (95.8) | 36 (94.7) |
Symptoms | 19 (79.2) | 25 (65.8) |
Comorbidities | 14 (58.3) | 34 (89.5) |
Medications | 9 (37.5) | 27 (71.0) |
Complementary and alternative medicine | 4 (16.7) | 15 (39.5) |
Lifestyle | 15 (62.5) | 30 (79.0) |
Biospecimens | 12 (50.0) | 23 (60.5) |
Biomarkers | 12 (50.0) | 23 (60.5) |
Domain . | Nonresponders, n (%) . | Responders, n (%) . |
---|---|---|
Psychologic | 14 (58.3) | 28 (73.7) |
Social | 7 (29.2) | 20 (52.6) |
Demographic | 20 (83.3) | 37 (97.4) |
Clinical | 23 (95.8) | 36 (94.7) |
Symptoms | 19 (79.2) | 25 (65.8) |
Comorbidities | 14 (58.3) | 34 (89.5) |
Medications | 9 (37.5) | 27 (71.0) |
Complementary and alternative medicine | 4 (16.7) | 15 (39.5) |
Lifestyle | 15 (62.5) | 30 (79.0) |
Biospecimens | 12 (50.0) | 23 (60.5) |
Biomarkers | 12 (50.0) | 23 (60.5) |
aCancer survivor epidemiology cohorts were not limited to collecting one domain. Collected domains for nonresponders were extracted from published studies and websites; these domains may have been collected and not yet included in publication.
Information collected within study domains
In the psychologic domain, the most common information collected was quality of life (n = 33), depressive symptoms (n = 22), and anxiety symptoms (n = 20). The least common psychologic information collected was motivation (n = 0), neuroticism (n = 1), conscientiousness (n = 0), self-control (n = 1), and health literacy (n = 1). In the social domain, the most common information collected by the cancer survivor cohort studies was type of social support received (n = 17), financial hardship (n = 7), survivor caregiving issues (n = 6), religiosity (n = 4), and acculturation (n = 4). The least common social information collected within the studies was civic participation (n = 0), culture (n = 0), and sense of community (n = 0). Studies that confirmed the collection of demographic information most often gathered the age (n = 53), race (n = 47), ethnicity (n = 46), education (n = 38), marital status (n = 38), and sex (n = 35) of their participants. The least common demographic information collected was participants' citizenship status (n = 0), veteran status (n = 2), and sexual orientation (n = 2).
Of the cancer survivor epidemiology cohort studies that collected clinical information, the most common information gathered was on treatment type (n = 54), cancer stage and grade (n = 40), and receipt of chemotherapy (n = 41). The least common clinical information gathered was the receipt of palliative, end-of-life care (n = 3), tumor vaccine (n = 3), and clinical trial enrollment (n = 6). The most common reported symptoms collected included pain (n = 23), fatigue (n = 18), and sleep disturbance (n = 14). The least common symptom information gathered was radiation burns (n = 1), hair loss (n = 2), and bruising easily (n = 2). The most common comorbidity information collected was on diabetes (n = 30), heart/coronary artery disease (n = 29), and hypertension (n = 23). The least common comorbidity information gathered was about alcohol hepatitis (n = 2), nonalcoholic steatohepatitis or nonalcoholic fatty liver disease (n = 2), and mononucleosis (n = 2). Finally, the most frequently collected medication information in the cancer survivor cohorts included the names of medications (n = 21), medication types (n = 20), and therapeutic category (n = 22). The least frequently collected information in the medication domain included medication side effects (n = 4), medication adherence (n = 4), and immunization history (n = 2).
In the CAM domain, the most commonly collected information was about supplement use (n = 7), chiropractic (n = 5), massage (n = 5), acupressure (n = 4), acupuncture (n = 4), diet-based therapies (n = 4), and yoga (n = 4). Information about ayurveda, chelation, homeopathic treatment, labyrinth walking, movement therapy, progression relaxation, qi gong, reflexology, and traditional healers, were not collected by any study. In the lifestyle domain, studies most often collected information on exercise/physical activity (n = 30), BMI (n = 31), and smoking/tobacco use (n = 30). The least frequently collected information within the lifestyle domain was hydration habits (n = 1), mindfulness (n = 1), and stress management (n = 0).
Of the 35 studies that collected biospecimens, the most commonly collected specimens were blood plasma (n = 23) and tumor tissues (n = 14). The least common biospecimen collected was feces (n = 1) and toe/fingernails (n = 1). Of the 35 studies that explored biomarkers, the most common biomarkers examined were insulin (n = 6), C-reactive protein (n = 6), and glucose (n = 5). No studies reported assessment of α-fetoprotein, cancer antigens, catecholamines, chromosomes 3, 7, 9, 17, cotinene, cytokeratins, expired carbon dioxide, gonadotropin, human complement factor BTA, interleukin, KIT gene, nuclear matrix protein, estrogen receptor, and thyroglobulin.
Common scales used within domains
Validated scales were commonly used to collect information from cancer survivors in three domains—psychologic, social, and lifestyle. Forty-five cohort studies reported using validated scales within the lifestyle domain, 42 cohort studies and 27 cohort studies reported using validated scales within the psychologic and social domains, respectively. In the psychologic domain, the most common scales used were the 12 and 36-item short-form health surveys [SF-36 (n = 9); SF-12 (n = 6)], and the Centers for Epidemiological Scale-Depression [CES-D (n = 9)]. The most common scales used in the social domain were the Functional Assessment of Cancer Therapy [FACT (n = 2)], Medical Outcomes Study [MOS (n = 1)]. Within the lifestyle domain, the most common scales were the Medical Outcome Study (n = 10), Harvard Food Frequency Questionnaire (n = 6), Pittsburgh Sleep Quality Index (n = 6), in addition to NHANES (n = 6). Four scales (FACT, MOS, PROMIS, and SF-12) were used to collect information over multiple domains (Table 3). Study aims and general information for the cohorts can be found in Table 4. Finally, Table 5 reports scales included by cohort respondents.
Use of common validated scales by domain in cancer survivor epidemiology cohortsa
. | Psychologic domain (42 cohorts) . | Social domain (27 cohorts) . | Lifestyle domain (45 cohorts) . |
---|---|---|---|
Scales . | n = number of cohorts used validated scale . | n = number of cohorts used validated scale . | n = number of cohorts used 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 |
. | Psychologic domain (42 cohorts) . | Social domain (27 cohorts) . | Lifestyle domain (45 cohorts) . |
---|---|---|---|
Scales . | n = number of cohorts used validated scale . | n = number of cohorts used validated scale . | n = number of cohorts used 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.
Study aims and general information for included cancer survivor epidemiology cohorts
Cohort . | Aims . | Sample size . | Eligibility . | Population . | Recruitment . |
---|---|---|---|---|---|
Respondents | |||||
A Longitudinal Assessment of Frailty in Young Adult Survivors of Childhood Cancer |
| 1,493 | Males and females (18–45 years) diagnosed with cancer in childhood, not pregnant or receiving treatment for cancer, or enrolled on SJLIFE protocol | Young adult survivors of childhood cancers | Ongoing |
American Cancer Society Study of Cancer Survivors-I (SCS-I) |
| 6,306 | Males and females (≥18 years old) diagnosed with 1 of 10 most highly incident cancers from April 2001–March 2002, a resident of target state at time of diagnosis | Adult survivors of prostate, breast, lung, colorectal, bladder, skin, kidney, lung, melanoma, ovarian, uterine, and non-Hodgkin lymphoma cancers sampled from 25 different cancer registries | Enrollment complete |
Analysis of Morbidity and Mortality Among Hematopoietic Cell Transplantation Survivors |
| 1,792 | Males and females (≥18 years old) who received any HCT from 1992 to 2009, were alive 2 or more years posttransplant, were Washington state residents at the time of transplant, and received transplantation for a malignant condition | Adult HCT survivors | Enrollment complete |
Antidepressants and Breast Cancer Pharmacoepidemiology |
| 16,887 | Females (≥18 years old) diagnosed with breast cancer between 1996 and 2007 and treated with tamoxifen. Women had pharmacy benefits and were estrogen-positive or progesterone-positive with no prior history of cancer | Adult breast cancer survivors | Ongoing through EMR |
ARIC-Ca (Cancer component of the ARIC study) |
| ∼4,900 | ARIC participants (males and females ≥18 years old) were considered eligible for the ARIC Cancer cohort if they consented to cancer research and were linkable to registry data | Participants in the ARIC study diagnosed with an incident first primary cancer | From 2013, cases are ascertained from medical records and self-report. Cancer registry linkages planned |
Black Women's Health Study |
| 59,000 in original cohort, including 998 breast cancer survivors. Total number of cancer survivors unknown | Females (≥18 years old) enrolled in the Black Women's Health Study who have been diagnosed with cancer | Adult cancer survivors | Ongoing |
Body Composition, Weight, and Colon Cancer Survival |
| ∼3,546 | Males and females (≥18 years old) diagnosed between 2005 and 2010 with stage I–III invasive colorectal cancer at Kaiser Permanente Northern California (KPNC) | Adult colorectal cancer survivors | Enrollment complete |
Breast and Colon Cancer Family Registries |
| >50,000 | Six clinical sites collect data from thousands of patients (males and females, ≥18 years old), which are supplied to Informatics Support Center run by Georgetown | Probands diagnosed with colorectal or breast cancer and their families | Ongoing |
Cancer Epidemiology Cohort in Male Health Professionals |
| Unable to ascertain | Males (≥18 years old) in the Health Professionals Follow-up Study | Participation in the Health Professionals Follow-up Study | Unable to ascertain |
Cancer of the Prostate Strategic Urologic Research Endeavor |
| 16,000 | Males (≥18 years old) with varying stages of biopsy-proven prostate adenocarcinoma diagnosed at 43 different practices, academic centers, and Veteran Affairs hospitals in the United States since 1995 | Adult prostate cancer survivors | Ongoing |
Childhood Cancer Survivor Study |
| >25,000 (goal: 50,000) | Males and females (≥21 years old) diagnosed with cancer who survived 5 or more years after diagnosis of cancer, who were ≥18 years old at baseline enrollment, and whose primary cancer treatment was between January 1970 and December 1999. The cohort has been assembled within 31 participating centers in the United States | Childhood cancer survivors | Ongoing |
Cognition in Older Breast Cancer Survivors: Treatment Exposure, APOE, and Smoking |
| 480 (goal: 540) | Older (≥60 years old) long-term (5–15 years postdiagnosis) female breast cancer survivors who were ≥55 years old at the time of breast cancer diagnosis and matched healthy controls | Adult breast cancer survivors | Ongoing |
ColoCare-Study: Transdisciplinary Research in Colorectal Cancer Prognosis |
| ∼5,000 | Males and females 18–89 years old who are newly diagnosed with colon or rectal cancer (stages 1–4), speak English, and are able to consent | Adult colorectal cancer survivors | Ongoing |
COmmonly used Medications and Breast Cancer Outcomes (COMBO) |
| 4,216 | Females (≥18 years old) living within the 13 counties covered by the Washington state SEER, diagnosed with stage 1 or 2 breast cancer with no bilateral disease between 1990 and 2008, and enrolled in group health practice for a year before and after breast cancer diagnosis | Adult breast cancer survivors | Enrollment complete |
Comparative Effectiveness of Surveillance Imaging Modalities in Breast Cancer Survivors |
| 36,444 | Female breast cancer survivors (≥18 years old) included in the breast cancer surveillance consortium with stage 0–III incident breast cancer diagnosed between 2005 and 2012 | Adult breast cancer survivors | Enrollment complete |
Determinants of late cardiovascular morbidity among survivors of hematopoietic CE |
| ∼5,000 | 2-year HCT survivors (males and females, ≥18 years old) treated at the Fred Hutchinson Research Center since 1969 | Adult HCT survivors | Enrollment complete |
Diet and Lifestyle in a Prospective Study of Bladder Cancer Survivors |
| 1,811 | Newly diagnosed noninvasive bladder cancer patients (males and females, ≥18 years old) in the Kaiser Permanente Northern California and Southern California medical care programs | Adult invasive bladder cancer survivors | Enrollment complete |
Emotion Regulation and Depression in Breast Cancer Survivorship |
| 460 | Female (≥21 years old) breast cancer patients within 4 months of new or recurrent breast cancer | Adult breast cancer survivors | Enrollment complete |
Epidemiology of Cancer in a Cohort of Older Women (ancillary study to the Iowa Women's Health Study) |
| 11,517 first primary cancers from 41,836 participants in original cohort | Postmenopausal female participants in the Iowa Women's Health Study | Females diagnosed with cancer in the Iowa Women's Health Study | Enrollment complete |
Evaluating Cancer Survivorship Care Models |
| 992 | Adult (males and females, ≥18 years old) survivors sampled from focus groups and national surveys | Adult breast, prostate, and colorectal cancer survivors | Enrollment complete |
Improving the Care and Outcomes of Women Undergoing Breast Surgery |
| 3,083 | Unable to ascertain | Breast cancer survivors | Enrollment complete |
Long-term Multidisciplinary Study of Cancer in Women: the Nurses' Health Study |
| Unable to ascertain | Females (≥18 years old) enrolled in the original Nurses' Health Study | Participants in the Nurses' Health Study | Enrollment complete |
Ovarian Reserve After Cancer: Longitudinal Effects (the ORACLE study) |
| 196 | Females (11–35 years old) who received treatment for a cancer that includes chemotherapy | Child and adult cancer survivors | Enrollment complete |
Patient decision making about breast reconstruction after mastectomy |
| 145 | Females (≥21 years old) who were planning to undergo mastectomy for stage I–III invasive ductal or lobular breast cancer, ductal carcinoma in situ, or prophylaxis | Adult breast cancer survivors | Enrollment complete |
Pediatric Cancer, Family Conflict, and Child Adjustment |
| Unable to ascertain | Families of young children (males and females, 2–18 years old) recently diagnosed with the most common forms of young childhood cancer: acute lymphoblastic leukemia, central nervous system tumors, Wilms tumor, and neuroblastoma | Families of young children diagnosed with cancer | Enrollment complete |
Penn State Cancer Survivor Study (PSCSS) |
| 1,763 | A cohort of cancer survivors (males and females, 25–62 years old at diagnosis) from the tumor registries of four medical centers in the eastern United States, diagnosed with cancer from 1997 to 1999 | Adult cancer survivors | Enrollment complete |
Project REACH |
| 299 | Males and females (≥18 years old) ≥ 2 years from their cancer diagnosis and ≥ 1 year from completion of cancer therapy | Adult survivors of childhood/adolescent cancers | Enrollment complete |
Prospective study of the impact of breast cancer on symptoms and functioning |
| Unable to ascertain | Females (≥18 years old) enrolled in the SWAN cohort | Adult breast cancer survivors | Enrollment complete |
Prostate Cancer Active Surveillance Study (PASS) |
| 2,300 | Males (≥21 years old) diagnosed with histologically confirmed clinically localized cancer of the prostate. Eligible participants have no previous treatment for prostate cancer, have an Eastern Cooperative Oncology Group performance status of 0 or 1, have elected active surveillance and their planned management for prostate cancer. If diagnosis was within 1 year of baseline, participant must have one biopsy with at least 10 cores. If 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 | Adult prostate cancer survivors | Ongoing |
Prostate Cancer Outcomes Study |
| 3,533 | Males (<89 years old) diagnosed with invasive prostate cancer diagnosed from October 1994 to October 31, 1995. Participants (60–89 years old) from King County, WA, were eligible | Adult prostate cancer survivors | Enrollment complete |
Quadrivalent Human Papillomavirus (HPV) Vaccine in Cancer Survivors |
| 1,150 | Male and female cancer survivors (9–26 years old) who attended a clinic appointment at one of the participating sites | Child and young adult cancer survivors | Enrollment complete |
Reducing racial/ethnic inequities in childhood cancer survivorship |
| ∼1,232 | Male and female (18–39 years old) Hispanic and non-Hispanic childhood cancer survivors | Young adult survivors of childhood cancer | Ongoing |
The Pathways Study |
| 4,505 | Females (≥21 years old at diagnosis), had no prior history of cancer (other than nonmelanoma skin cancer), could speak English, Spanish, Cantonese, or Mandarin, and lived within 65 miles of a study field interviewer; all participants were recently diagnosed with invasive breast cancer from Kaiser Permanente Northern California between 2006 and 2013 | Adult breast cancer survivors | Enrollment complete |
The Reproductive Window Study in Young Adult Cancer Survivors |
| 1,000 | Females (18–35 years old) who have completed treatment for cancer | Young adult cancer survivors | Enrollment complete |
The Young Women's Breast Cancer Study |
| 1,302 | Females (≤40 years old) newly diagnosed with breast cancer from academic and community health care institutions | Adult breast cancer survivors | Enrollment complete |
Total Cancer Care |
| 120,000+ | Males and females (≥18 years old) who are a patient at the participating institution and either have cancer or 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) | Adult patients at participating cancer centers and health care institutions | Ongoing |
UNC Health Registry/Cancer Survivorship Cohort |
| 7,500+ | Males and females (≥18 years old), have a North Carolina address and an appointment in the North Carolina Hospital System | Adult patients in the North Carolina Hospital System | Enrollment complete |
Urinary Diversion Among Bladder Cancer Survivors: Cost, Complications, and Quality of Life |
| 1,250 | Males and females (≥18 years old) with bladder cancer undergoing cystectomy and their family caregivers within three Kaiser Permanente regions | Adult bladder cancer survivors | Enrollment complete |
Women's Circle of Health Study |
| 1,900 | White or African American females (20–75 years old) newly diagnosed with breast cancer between 2006–2012, able to read and understand English, with no prior history of cancer (except nonmelanoma skin cancer) | Adult breast cancer survivors | Enrollment complete |
Nonrespondents | |||||
Adolescent and Young Adult Health Outcomes and Patient Experience Study |
| 523 | Males and females (15–39 years old at diagnosis) diagnosed between July 1, 2007 and October 31, 2008 with a germ cell cancer (non-Hodgkin lymphoma, Hodgkin lymphoma, acute lymphocytic leukemia, Ewing sarcoma, osteosarcoma, or rhabdomyosarcoma); participants must be residents of the study area and able to read English | Young adult survivors of acute lymphocytic leukemia, Hodgkin lymphoma, non-Hodgkin lymphoma, germ cell cancer or sarcoma | Enrollment complete |
American Cancer Society Study of Cancer Survivors-II (SCS-II) |
| 9,105 | Males and females (≥18 years old at diagnosis) with 1 of 6 highly incident cancers 2, 5, or 10 years prior to sampling | Adult survivors of prostate, breast, colorectal, bladder, skin melanoma, or uterine cancer | Enrollment complete |
Assessment of Cancer Concerns at the End of Treatment (ACE) |
| ∼250 | Males and females (≥18 years old) diagnosed with invasive breast cancer within 1 year of completing primary treatment, and scheduled for an end of treatment visit. Participants must understand English, have Internet and working e-mail address | Adult breast cancer survivors | Ongoing |
Bio-behavioral Research at the Intersection of Cancer and Aging |
| 1,280 | Females (≥65 years old) diagnosed with invasive nonmetastatic breast cancer and were within 20 weeks of surgery, spoke English or Spanish, and passed an entry cognitive screen | Adult breast cancer survivors | Enrollment complete |
Bone Marrow Transplant Survivor Study I & II |
| 7,465 | Males and females who have undergone transplantation at City of Hope or University of Minnesota between 1974 and 2010 and survived at least 2 years | Leukemia and lymphoma survivors who received bone marrow transplant | Enrollment complete |
Breast Cancer Treatment Effectiveness in Older Women (BOW) cohort study |
| 1,277 | Females (≥65 years old at diagnosis) with stage I or II breast cancer from 1990 to 1994 in six geographically diverse Cancer Research Network health care systems | Women from the BOW cohort who survived disease-free for 5 years | Enrollment complete |
Colorectal Cancer Outcomes, Prognosis, and Epidemiology Cohort (COPE) (sister cohort to ColoCare) |
| ∼250 | Males and females (≥18 years old) newly diagnosed with invasive adenocarcinoma of the colon or rectum | Adult colorectal cancer survivors | Unable to ascertain |
Commonly Used Medications and Risk of Colorectal Cancer Recurrence |
| ∼3,300 | Males and females (≥18 years old) with stage I–IIIA colorectal cancer diagnosed from 1995 to 2014 in two integrated health care delivery systems | Adult colorectal cancer survivors | Enrollment complete |
Communication and economic outcomes for cancer survivors |
| 250 | Males and females (≥18 years old) with hematologic cancer at any stage of disease who had begun initial treatment | Adult hematologic cancer survivors | Enrollment complete |
Health, Eating, Activity and Lifestyle (HEAL) Study |
| 1,183 | Females (≥18 years old) diagnosed with breast cancer between July 1996 and March 1999 from 3 parts of the United States: Western Washington, New Mexico, and Southern California | Adult breast cancer survivors | Enrollment complete |
Late Effects of Treatment in Wilms Tumor Survivors and Offspring |
| 9,240 enrolled during 1969–2002 National Wilms Tumor Study | Males and females enrolled in the original National Wilms Tumor Study | Adult survivors of childhood Wilms tumor | Enrollment complete |
Life After Cancer Epidemiology (LACE) Cohort |
| 2,321 | Females (18–79 years old) diagnosed with primary breast cancer within 39 months of enrollment and have completed treatment | Adult breast cancer survivors | Enrollment complete |
Mayo Clinic Lung Cancer Cohort | To improve the current understanding of the etiology and natural history of primary lung cancer | Unable to ascertain | Males and females (≥18 years old) diagnosed with lung cancer and treated at the Mayo Clinic in Rochester, MN, or who have joined the cohort after seeking consultation | Adult lung cancer patients | Unable to ascertain |
Mayo Clinic Ovarian Cancer Study | To understand the etiology, natural history, and outcomes associated with ovarian cancer | 1,398 | Females (≥20 years old) diagnosed with ovarian cancer and treated at the Mayo Clinic in Rochester, MN | Adult ovarian cancer patients | Unable to ascertain |
North Carolina Prostate Cancer Comparative Effectiveness & Survivorship Study (NC ProCESS) | To examine comparative outcomes among different modern prostate cancer treatment options in this cohort of patients | 1,656 | Males (35–80 years old) were identified using Rapid Case Ascertainment of the North Carolina Central Cancer Registry. Participants were ineligible if they started treatment, could not be reached, did not speak English, or if physician refused to allow patient contact | Adult prostate cancer patients | Enrollment complete |
Population-based Cohort of Endometrial Cancer Survivors in Utah |
| 2,648 | Females (≥18 years old) diagnosed with endometrial cancer from 1997 to 2012 in Utah | Adult endometrial cancer survivors | Enrollment complete |
Prostate Cancer Follow-up Cohort | To identify molecular, epidemiologic, and clinical markers related to prostate cancer progression in a multiethnic cohort of prostate cancer patients | 1,201 | Males (≥18 years old) diagnosed with prostate cancer enrolled in prior studies for which baseline clinic and epidemiologic information has already been collected | Adult prostate cancer patients | Enrollment complete |
Prostate Cancer Outcomes and Satisfaction with Treatment Quality Assessment (PROST-QA) | To assess longitudinal changes in HRQOL and patient/spouse satisfaction with processes of care among men with early-stage prostate cancer treated primarily with local therapy | 1,201 | Males (≥18 years old) with previously untreated T1 or T2 prostate cancer who elected prostatectomy, external beam radiotherapy or brachytherapy treatments. Participants were enrolled from 2003 to 2006 at 9 hospitals | Adult prostate cancer survivors | Enrollment complete |
Sleep, Inflammation, and Depression Occurrence in Breast Cancer Survivors |
| ∼300 | Females (≥55 years old) diagnosed with early-stage breast cancer and age-matched comparison women who are community members of the Kaiser Permanente Southern California | Adult breast cancer survivors | Enrollment complete |
Southern Community Cancer Survivorship Study |
| ∼577 | Females diagnosed with breast cancer previously enrolled in the Southern Community Cohort Study | Adult breast cancer survivors | Enrollment complete |
Studies of Populations Exposed to Therapeutic Medical Radiation and Other Agents | To evaluate the risk of radiation-related and chemotherapy-related second cancers | Unable to ascertain | Unable to ascertain | Cancer survivors | Unable to ascertain |
Swallow function and oral morbidities in radiation-treated head/neck cancer survivors |
| 60 | Males and females diagnosed with head/neck cancer treated with radiotherapy | Head/neck cancer survivors | Unable to ascertain |
Women's Health Initiative (WHI) Cancer Survivor Cohort (CSC) | To build a CSC infrastructure in WHI by:
| 9,934 | Females part of the original WHI and still in active follow-up and were subsequently diagnosed with breast, lung, colorectal, endometrial, ovarian, fallopian, primary peritoneal, melanoma, or non-Hodgkin lymphoma | Adult female cancer survivors | Enrollment complete |
Cohort . | Aims . | Sample size . | Eligibility . | Population . | Recruitment . |
---|---|---|---|---|---|
Respondents | |||||
A Longitudinal Assessment of Frailty in Young Adult Survivors of Childhood Cancer |
| 1,493 | Males and females (18–45 years) diagnosed with cancer in childhood, not pregnant or receiving treatment for cancer, or enrolled on SJLIFE protocol | Young adult survivors of childhood cancers | Ongoing |
American Cancer Society Study of Cancer Survivors-I (SCS-I) |
| 6,306 | Males and females (≥18 years old) diagnosed with 1 of 10 most highly incident cancers from April 2001–March 2002, a resident of target state at time of diagnosis | Adult survivors of prostate, breast, lung, colorectal, bladder, skin, kidney, lung, melanoma, ovarian, uterine, and non-Hodgkin lymphoma cancers sampled from 25 different cancer registries | Enrollment complete |
Analysis of Morbidity and Mortality Among Hematopoietic Cell Transplantation Survivors |
| 1,792 | Males and females (≥18 years old) who received any HCT from 1992 to 2009, were alive 2 or more years posttransplant, were Washington state residents at the time of transplant, and received transplantation for a malignant condition | Adult HCT survivors | Enrollment complete |
Antidepressants and Breast Cancer Pharmacoepidemiology |
| 16,887 | Females (≥18 years old) diagnosed with breast cancer between 1996 and 2007 and treated with tamoxifen. Women had pharmacy benefits and were estrogen-positive or progesterone-positive with no prior history of cancer | Adult breast cancer survivors | Ongoing through EMR |
ARIC-Ca (Cancer component of the ARIC study) |
| ∼4,900 | ARIC participants (males and females ≥18 years old) were considered eligible for the ARIC Cancer cohort if they consented to cancer research and were linkable to registry data | Participants in the ARIC study diagnosed with an incident first primary cancer | From 2013, cases are ascertained from medical records and self-report. Cancer registry linkages planned |
Black Women's Health Study |
| 59,000 in original cohort, including 998 breast cancer survivors. Total number of cancer survivors unknown | Females (≥18 years old) enrolled in the Black Women's Health Study who have been diagnosed with cancer | Adult cancer survivors | Ongoing |
Body Composition, Weight, and Colon Cancer Survival |
| ∼3,546 | Males and females (≥18 years old) diagnosed between 2005 and 2010 with stage I–III invasive colorectal cancer at Kaiser Permanente Northern California (KPNC) | Adult colorectal cancer survivors | Enrollment complete |
Breast and Colon Cancer Family Registries |
| >50,000 | Six clinical sites collect data from thousands of patients (males and females, ≥18 years old), which are supplied to Informatics Support Center run by Georgetown | Probands diagnosed with colorectal or breast cancer and their families | Ongoing |
Cancer Epidemiology Cohort in Male Health Professionals |
| Unable to ascertain | Males (≥18 years old) in the Health Professionals Follow-up Study | Participation in the Health Professionals Follow-up Study | Unable to ascertain |
Cancer of the Prostate Strategic Urologic Research Endeavor |
| 16,000 | Males (≥18 years old) with varying stages of biopsy-proven prostate adenocarcinoma diagnosed at 43 different practices, academic centers, and Veteran Affairs hospitals in the United States since 1995 | Adult prostate cancer survivors | Ongoing |
Childhood Cancer Survivor Study |
| >25,000 (goal: 50,000) | Males and females (≥21 years old) diagnosed with cancer who survived 5 or more years after diagnosis of cancer, who were ≥18 years old at baseline enrollment, and whose primary cancer treatment was between January 1970 and December 1999. The cohort has been assembled within 31 participating centers in the United States | Childhood cancer survivors | Ongoing |
Cognition in Older Breast Cancer Survivors: Treatment Exposure, APOE, and Smoking |
| 480 (goal: 540) | Older (≥60 years old) long-term (5–15 years postdiagnosis) female breast cancer survivors who were ≥55 years old at the time of breast cancer diagnosis and matched healthy controls | Adult breast cancer survivors | Ongoing |
ColoCare-Study: Transdisciplinary Research in Colorectal Cancer Prognosis |
| ∼5,000 | Males and females 18–89 years old who are newly diagnosed with colon or rectal cancer (stages 1–4), speak English, and are able to consent | Adult colorectal cancer survivors | Ongoing |
COmmonly used Medications and Breast Cancer Outcomes (COMBO) |
| 4,216 | Females (≥18 years old) living within the 13 counties covered by the Washington state SEER, diagnosed with stage 1 or 2 breast cancer with no bilateral disease between 1990 and 2008, and enrolled in group health practice for a year before and after breast cancer diagnosis | Adult breast cancer survivors | Enrollment complete |
Comparative Effectiveness of Surveillance Imaging Modalities in Breast Cancer Survivors |
| 36,444 | Female breast cancer survivors (≥18 years old) included in the breast cancer surveillance consortium with stage 0–III incident breast cancer diagnosed between 2005 and 2012 | Adult breast cancer survivors | Enrollment complete |
Determinants of late cardiovascular morbidity among survivors of hematopoietic CE |
| ∼5,000 | 2-year HCT survivors (males and females, ≥18 years old) treated at the Fred Hutchinson Research Center since 1969 | Adult HCT survivors | Enrollment complete |
Diet and Lifestyle in a Prospective Study of Bladder Cancer Survivors |
| 1,811 | Newly diagnosed noninvasive bladder cancer patients (males and females, ≥18 years old) in the Kaiser Permanente Northern California and Southern California medical care programs | Adult invasive bladder cancer survivors | Enrollment complete |
Emotion Regulation and Depression in Breast Cancer Survivorship |
| 460 | Female (≥21 years old) breast cancer patients within 4 months of new or recurrent breast cancer | Adult breast cancer survivors | Enrollment complete |
Epidemiology of Cancer in a Cohort of Older Women (ancillary study to the Iowa Women's Health Study) |
| 11,517 first primary cancers from 41,836 participants in original cohort | Postmenopausal female participants in the Iowa Women's Health Study | Females diagnosed with cancer in the Iowa Women's Health Study | Enrollment complete |
Evaluating Cancer Survivorship Care Models |
| 992 | Adult (males and females, ≥18 years old) survivors sampled from focus groups and national surveys | Adult breast, prostate, and colorectal cancer survivors | Enrollment complete |
Improving the Care and Outcomes of Women Undergoing Breast Surgery |
| 3,083 | Unable to ascertain | Breast cancer survivors | Enrollment complete |
Long-term Multidisciplinary Study of Cancer in Women: the Nurses' Health Study |
| Unable to ascertain | Females (≥18 years old) enrolled in the original Nurses' Health Study | Participants in the Nurses' Health Study | Enrollment complete |
Ovarian Reserve After Cancer: Longitudinal Effects (the ORACLE study) |
| 196 | Females (11–35 years old) who received treatment for a cancer that includes chemotherapy | Child and adult cancer survivors | Enrollment complete |
Patient decision making about breast reconstruction after mastectomy |
| 145 | Females (≥21 years old) who were planning to undergo mastectomy for stage I–III invasive ductal or lobular breast cancer, ductal carcinoma in situ, or prophylaxis | Adult breast cancer survivors | Enrollment complete |
Pediatric Cancer, Family Conflict, and Child Adjustment |
| Unable to ascertain | Families of young children (males and females, 2–18 years old) recently diagnosed with the most common forms of young childhood cancer: acute lymphoblastic leukemia, central nervous system tumors, Wilms tumor, and neuroblastoma | Families of young children diagnosed with cancer | Enrollment complete |
Penn State Cancer Survivor Study (PSCSS) |
| 1,763 | A cohort of cancer survivors (males and females, 25–62 years old at diagnosis) from the tumor registries of four medical centers in the eastern United States, diagnosed with cancer from 1997 to 1999 | Adult cancer survivors | Enrollment complete |
Project REACH |
| 299 | Males and females (≥18 years old) ≥ 2 years from their cancer diagnosis and ≥ 1 year from completion of cancer therapy | Adult survivors of childhood/adolescent cancers | Enrollment complete |
Prospective study of the impact of breast cancer on symptoms and functioning |
| Unable to ascertain | Females (≥18 years old) enrolled in the SWAN cohort | Adult breast cancer survivors | Enrollment complete |
Prostate Cancer Active Surveillance Study (PASS) |
| 2,300 | Males (≥21 years old) diagnosed with histologically confirmed clinically localized cancer of the prostate. Eligible participants have no previous treatment for prostate cancer, have an Eastern Cooperative Oncology Group performance status of 0 or 1, have elected active surveillance and their planned management for prostate cancer. If diagnosis was within 1 year of baseline, participant must have one biopsy with at least 10 cores. If 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 | Adult prostate cancer survivors | Ongoing |
Prostate Cancer Outcomes Study |
| 3,533 | Males (<89 years old) diagnosed with invasive prostate cancer diagnosed from October 1994 to October 31, 1995. Participants (60–89 years old) from King County, WA, were eligible | Adult prostate cancer survivors | Enrollment complete |
Quadrivalent Human Papillomavirus (HPV) Vaccine in Cancer Survivors |
| 1,150 | Male and female cancer survivors (9–26 years old) who attended a clinic appointment at one of the participating sites | Child and young adult cancer survivors | Enrollment complete |
Reducing racial/ethnic inequities in childhood cancer survivorship |
| ∼1,232 | Male and female (18–39 years old) Hispanic and non-Hispanic childhood cancer survivors | Young adult survivors of childhood cancer | Ongoing |
The Pathways Study |
| 4,505 | Females (≥21 years old at diagnosis), had no prior history of cancer (other than nonmelanoma skin cancer), could speak English, Spanish, Cantonese, or Mandarin, and lived within 65 miles of a study field interviewer; all participants were recently diagnosed with invasive breast cancer from Kaiser Permanente Northern California between 2006 and 2013 | Adult breast cancer survivors | Enrollment complete |
The Reproductive Window Study in Young Adult Cancer Survivors |
| 1,000 | Females (18–35 years old) who have completed treatment for cancer | Young adult cancer survivors | Enrollment complete |
The Young Women's Breast Cancer Study |
| 1,302 | Females (≤40 years old) newly diagnosed with breast cancer from academic and community health care institutions | Adult breast cancer survivors | Enrollment complete |
Total Cancer Care |
| 120,000+ | Males and females (≥18 years old) who are a patient at the participating institution and either have cancer or 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) | Adult patients at participating cancer centers and health care institutions | Ongoing |
UNC Health Registry/Cancer Survivorship Cohort |
| 7,500+ | Males and females (≥18 years old), have a North Carolina address and an appointment in the North Carolina Hospital System | Adult patients in the North Carolina Hospital System | Enrollment complete |
Urinary Diversion Among Bladder Cancer Survivors: Cost, Complications, and Quality of Life |
| 1,250 | Males and females (≥18 years old) with bladder cancer undergoing cystectomy and their family caregivers within three Kaiser Permanente regions | Adult bladder cancer survivors | Enrollment complete |
Women's Circle of Health Study |
| 1,900 | White or African American females (20–75 years old) newly diagnosed with breast cancer between 2006–2012, able to read and understand English, with no prior history of cancer (except nonmelanoma skin cancer) | Adult breast cancer survivors | Enrollment complete |
Nonrespondents | |||||
Adolescent and Young Adult Health Outcomes and Patient Experience Study |
| 523 | Males and females (15–39 years old at diagnosis) diagnosed between July 1, 2007 and October 31, 2008 with a germ cell cancer (non-Hodgkin lymphoma, Hodgkin lymphoma, acute lymphocytic leukemia, Ewing sarcoma, osteosarcoma, or rhabdomyosarcoma); participants must be residents of the study area and able to read English | Young adult survivors of acute lymphocytic leukemia, Hodgkin lymphoma, non-Hodgkin lymphoma, germ cell cancer or sarcoma | Enrollment complete |
American Cancer Society Study of Cancer Survivors-II (SCS-II) |
| 9,105 | Males and females (≥18 years old at diagnosis) with 1 of 6 highly incident cancers 2, 5, or 10 years prior to sampling | Adult survivors of prostate, breast, colorectal, bladder, skin melanoma, or uterine cancer | Enrollment complete |
Assessment of Cancer Concerns at the End of Treatment (ACE) |
| ∼250 | Males and females (≥18 years old) diagnosed with invasive breast cancer within 1 year of completing primary treatment, and scheduled for an end of treatment visit. Participants must understand English, have Internet and working e-mail address | Adult breast cancer survivors | Ongoing |
Bio-behavioral Research at the Intersection of Cancer and Aging |
| 1,280 | Females (≥65 years old) diagnosed with invasive nonmetastatic breast cancer and were within 20 weeks of surgery, spoke English or Spanish, and passed an entry cognitive screen | Adult breast cancer survivors | Enrollment complete |
Bone Marrow Transplant Survivor Study I & II |
| 7,465 | Males and females who have undergone transplantation at City of Hope or University of Minnesota between 1974 and 2010 and survived at least 2 years | Leukemia and lymphoma survivors who received bone marrow transplant | Enrollment complete |
Breast Cancer Treatment Effectiveness in Older Women (BOW) cohort study |
| 1,277 | Females (≥65 years old at diagnosis) with stage I or II breast cancer from 1990 to 1994 in six geographically diverse Cancer Research Network health care systems | Women from the BOW cohort who survived disease-free for 5 years | Enrollment complete |
Colorectal Cancer Outcomes, Prognosis, and Epidemiology Cohort (COPE) (sister cohort to ColoCare) |
| ∼250 | Males and females (≥18 years old) newly diagnosed with invasive adenocarcinoma of the colon or rectum | Adult colorectal cancer survivors | Unable to ascertain |
Commonly Used Medications and Risk of Colorectal Cancer Recurrence |
| ∼3,300 | Males and females (≥18 years old) with stage I–IIIA colorectal cancer diagnosed from 1995 to 2014 in two integrated health care delivery systems | Adult colorectal cancer survivors | Enrollment complete |
Communication and economic outcomes for cancer survivors |
| 250 | Males and females (≥18 years old) with hematologic cancer at any stage of disease who had begun initial treatment | Adult hematologic cancer survivors | Enrollment complete |
Health, Eating, Activity and Lifestyle (HEAL) Study |
| 1,183 | Females (≥18 years old) diagnosed with breast cancer between July 1996 and March 1999 from 3 parts of the United States: Western Washington, New Mexico, and Southern California | Adult breast cancer survivors | Enrollment complete |
Late Effects of Treatment in Wilms Tumor Survivors and Offspring |
| 9,240 enrolled during 1969–2002 National Wilms Tumor Study | Males and females enrolled in the original National Wilms Tumor Study | Adult survivors of childhood Wilms tumor | Enrollment complete |
Life After Cancer Epidemiology (LACE) Cohort |
| 2,321 | Females (18–79 years old) diagnosed with primary breast cancer within 39 months of enrollment and have completed treatment | Adult breast cancer survivors | Enrollment complete |
Mayo Clinic Lung Cancer Cohort | To improve the current understanding of the etiology and natural history of primary lung cancer | Unable to ascertain | Males and females (≥18 years old) diagnosed with lung cancer and treated at the Mayo Clinic in Rochester, MN, or who have joined the cohort after seeking consultation | Adult lung cancer patients | Unable to ascertain |
Mayo Clinic Ovarian Cancer Study | To understand the etiology, natural history, and outcomes associated with ovarian cancer | 1,398 | Females (≥20 years old) diagnosed with ovarian cancer and treated at the Mayo Clinic in Rochester, MN | Adult ovarian cancer patients | Unable to ascertain |
North Carolina Prostate Cancer Comparative Effectiveness & Survivorship Study (NC ProCESS) | To examine comparative outcomes among different modern prostate cancer treatment options in this cohort of patients | 1,656 | Males (35–80 years old) were identified using Rapid Case Ascertainment of the North Carolina Central Cancer Registry. Participants were ineligible if they started treatment, could not be reached, did not speak English, or if physician refused to allow patient contact | Adult prostate cancer patients | Enrollment complete |
Population-based Cohort of Endometrial Cancer Survivors in Utah |
| 2,648 | Females (≥18 years old) diagnosed with endometrial cancer from 1997 to 2012 in Utah | Adult endometrial cancer survivors | Enrollment complete |
Prostate Cancer Follow-up Cohort | To identify molecular, epidemiologic, and clinical markers related to prostate cancer progression in a multiethnic cohort of prostate cancer patients | 1,201 | Males (≥18 years old) diagnosed with prostate cancer enrolled in prior studies for which baseline clinic and epidemiologic information has already been collected | Adult prostate cancer patients | Enrollment complete |
Prostate Cancer Outcomes and Satisfaction with Treatment Quality Assessment (PROST-QA) | To assess longitudinal changes in HRQOL and patient/spouse satisfaction with processes of care among men with early-stage prostate cancer treated primarily with local therapy | 1,201 | Males (≥18 years old) with previously untreated T1 or T2 prostate cancer who elected prostatectomy, external beam radiotherapy or brachytherapy treatments. Participants were enrolled from 2003 to 2006 at 9 hospitals | Adult prostate cancer survivors | Enrollment complete |
Sleep, Inflammation, and Depression Occurrence in Breast Cancer Survivors |
| ∼300 | Females (≥55 years old) diagnosed with early-stage breast cancer and age-matched comparison women who are community members of the Kaiser Permanente Southern California | Adult breast cancer survivors | Enrollment complete |
Southern Community Cancer Survivorship Study |
| ∼577 | Females diagnosed with breast cancer previously enrolled in the Southern Community Cohort Study | Adult breast cancer survivors | Enrollment complete |
Studies of Populations Exposed to Therapeutic Medical Radiation and Other Agents | To evaluate the risk of radiation-related and chemotherapy-related second cancers | Unable to ascertain | Unable to ascertain | Cancer survivors | Unable to ascertain |
Swallow function and oral morbidities in radiation-treated head/neck cancer survivors |
| 60 | Males and females diagnosed with head/neck cancer treated with radiotherapy | Head/neck cancer survivors | Unable to ascertain |
Women's Health Initiative (WHI) Cancer Survivor Cohort (CSC) | To build a CSC infrastructure in WHI by:
| 9,934 | Females part of the original WHI and still in active follow-up and were subsequently diagnosed with breast, lung, colorectal, endometrial, ovarian, fallopian, primary peritoneal, melanoma, or non-Hodgkin lymphoma | Adult female cancer survivors | Enrollment complete |
Reported scales included by cohort respondents (N = 28)a
Cohort study . | Scales utilized . |
---|---|
A Longitudinal Assessment of Frailty in Young Adult Survivors of Childhood Cancer | Seven-day physical activity diary or recall (PAR); Block Food Frequency Questionnaire (FFQ); 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, APOE, and Smoking | Bidimensional Acculturation Scale for Hispanics; CES-D; Fatigue Symptom Inventory; 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 Prognosis | APPEAL; Community Healthy Activities Model Program for Seniors (CHAMPS) Activities 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 of Hematopoietic CE | Fruit and vegetable intake; NHANES; NHANES Tobacco Questionnaire; NHIS Adult Physical Activity |
Diet and Lifestyle in a Prospective Study of Bladder Cancer Survivors | Food Frequency Questionnaire |
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 study to Iowa Women's Health Study | Harvard Food Frequency Questionnaire; IADL; MOS Short-Form and subscales; MOS General Short-Form Health Survey (SF-20, SF-36) |
Improving the Care and Outcomes of Women Undergoing Breast Surgery | Functional Assessment of Cancer Therapy-Breast Cancer (FACT-B); SF-12 |
Long-Term Multidisciplinary Study of Cancer in Women: The Nurse's Health Study | ADL; Berkman-Syme Social Integration; CES-D; Crown-Crisp Anxiety Scale; daytime 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 Mastectomy | Breast-Q |
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 and Functioning | Baecke Activity Questionnaire; Block FFQ; CES-D; Childhood Trauma Questionnaire (CTQ); 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 |
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 Survivorship | Acculturation Rating Scale for Mexican Americans (ARSMA); CES-D; Life Orientation Test- 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, Complications, and QOL | ADL; Bladder Cancer Index; Body Image Scale (BIS); City of Hope Quality of Life; EQ-5D |
Cohort study . | Scales utilized . |
---|---|
A Longitudinal Assessment of Frailty in Young Adult Survivors of Childhood Cancer | Seven-day physical activity diary or recall (PAR); Block Food Frequency Questionnaire (FFQ); 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, APOE, and Smoking | Bidimensional Acculturation Scale for Hispanics; CES-D; Fatigue Symptom Inventory; 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 Prognosis | APPEAL; Community Healthy Activities Model Program for Seniors (CHAMPS) Activities 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 of Hematopoietic CE | Fruit and vegetable intake; NHANES; NHANES Tobacco Questionnaire; NHIS Adult Physical Activity |
Diet and Lifestyle in a Prospective Study of Bladder Cancer Survivors | Food Frequency Questionnaire |
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 study to Iowa Women's Health Study | Harvard Food Frequency Questionnaire; IADL; MOS Short-Form and subscales; MOS General Short-Form Health Survey (SF-20, SF-36) |
Improving the Care and Outcomes of Women Undergoing Breast Surgery | Functional Assessment of Cancer Therapy-Breast Cancer (FACT-B); SF-12 |
Long-Term Multidisciplinary Study of Cancer in Women: The Nurse's Health Study | ADL; Berkman-Syme Social Integration; CES-D; Crown-Crisp Anxiety Scale; daytime 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 Mastectomy | Breast-Q |
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 and Functioning | Baecke Activity Questionnaire; Block FFQ; CES-D; Childhood Trauma Questionnaire (CTQ); 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 |
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 Survivorship | Acculturation Rating Scale for Mexican Americans (ARSMA); CES-D; Life Orientation Test- 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, Complications, and QOL | ADL; Bladder Cancer Index; Body Image Scale (BIS); City of Hope Quality of Life; EQ-5D |
aSome survey respondents did not include information regarding the validated scales used in the cohort studies.
Discussion
The purpose of this study was to conduct an environmental scan of cancer survivor cohorts, to determine the scope and scale of information collected on demographic, biopsychosocial, and selected clinical variables from cancer survivors. The increase in the number of cancer survivors living longer has brought attention to the importance of understanding and addressing the needs of this population (9). Several key findings are apparent from this study. First, the majority of studies included breast cancer survivors, while other major cancer sites, including lung, colon, and prostate, are not as well-studied. Breast cancer is the most common cancer among women with favorable survival rates, increasing the need to address problems these survivors face (2). In addition, due to their large numbers, it may be easier to recruit breast cancer survivors compared with other cancer types. However, there are important research questions that need to be addressed for cancer survivors across cancer site. It may be more difficult to recruit cancer survivors with shorter life expectancies, yet there are many other cancers with favorable survival rates that can be recruited into cohort studies. For example, we found that approximately 23% of the studies focused on lung cancer survivors yet, in 2017, lung cancer has the second highest incidence rate than any other cancer in both men and women, and with targeted treatments, some survivors are living for months and years with significant symptoms (2).
Second, the majority of the studies examined clinical, demographic, psychologic, and lifestyle measures, whereas fewer studies gathered information about social factors, CAM use, and collected biospecimens. Although a clinical focus (e.g., cancer type, cancer stage) is inherent in cancer survivor studies, more effort should be made to not only collect more detailed and complete data on these clinical variables but also expand into symptoms, adverse outcomes/toxicities, and treatment received. Another important yet understudied area of cancer survivorship is 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 survivors reported CAM use within the past year (39, 40). Future studies should consider measuring CAM use because it is a common practice that could interact with treatment or disease progression, as well as affecting other psychologic, social, and clinical characteristics of cancer survivors.
Another research gap is the collection of information related to social domain among cancer survivors. In this study, we found that less than half of the studies explored social factors in cancer survivorship. However, social factors such as acculturation, culture, and discrimination have repeatedly been shown to influence health behaviors of cancer survivors (41–43) and are of particular interest to those interested in health disparities. Furthermore, 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 environment, including sources of support, and geographic surroundings 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, randomized 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 from collecting biospecimens for biomarker research. Transdisciplinary 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 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. 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 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 phrases used to identify cohorts in the PubMed and MEDLINE literature review as well as the NIH RePORTER query; additional 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 mostly close-ended to facilitate data collection and reporting; however, domains not included in the questionnaire were excluded from this report limiting the ability to fully characterize the breadth of information collected across all cancer survivor cohorts.
Conclusions
In summary, cancer survivorship research continues to grow as has the population of survivors (2, 3). Researchers have many opportunities to explore the myriad of issues survivors of all cancers experience. To maximize the opportunity to address the needs among cancer survivors, future research should include 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.
Disclosure of Potential Conflicts of Interest
E.D. Paskett reports receiving other commercial research support from Merck Foundation and has ownership interest (including patents) in Pfizer. No potential conflicts of interest were disclosed by the other authors.
Authors' Contributions
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, provided facilities, etc.): J.L. Krok-Schoen, B.M. Bernardo
Analysis and interpretation of data (e.g., statistical analysis, biostatistics, computational analysis): J. Peng, E.D. Paskett
Writing, review, and/or revision of the manuscript: J.L. Krok-Schoen, B.M. Bernardo, J.W. Elena, P.A. Green, E. Hoover, J. Peng, G.L. Anderson, B. Caan, L. Johnson, E.D. Paskett
Administrative, technical, or material support (i.e., reporting or organizing data, constructing databases): J.L. Krok-Schoen, J.W. Elena, E.D. Paskett
Study supervision: E.D. Paskett
Acknowledgments
This work was supported by the Supplement to the Women's Health Initiative Life and Longevity After Cancer (LILAC) grant (UM1CA173642).
The costs of publication of this article were defrayed in part by the payment of page charges. This article must therefore be hereby marked advertisement in accordance with 18 U.S.C. Section 1734 solely to indicate this fact.