Adolescents and young adults (AYAs) diagnosed with cancer face numerous physical, psychosocial, and practical challenges. This article describes the health-related quality of life (HRQOL) and associated demographic and health-related characteristics of this developmentally diverse population.
Patients and Methods
Data are from the Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) study, a population-based cohort of 523 AYA patients with cancer, ages 15 to 39 years at diagnosis from 2007 to 2009. Comparisons are made by age group and with general and healthy populations. Multiple linear regression models evaluated effects of demographic, disease, health care, and symptom variables on multiple domains of HRQOL using the Pediatric Quality of Life Inventory (PedsQL) and the Short-Form Health Survey 12 (SF-12).
Overall, respondents reported significantly worse HRQOL across both physical and mental health scales than did general and healthy populations. The greatest deficits were in limitations to physical and emotional roles, physical and social functioning, and fatigue. Teenaged patients (ages 15 to 17 years) reported worse physical and work/school functioning than patients 18 to 25 years old. Regression models showed that HRQOL was worse for those in treatment, with current/recent symptoms, or lacking health insurance at any time since diagnosis. In addition, sarcoma patients, Hispanic patients, and those with high school or lower education reported worse physical health. Unmarried patients reported worse mental health.
Results suggest that AYAs with cancer have major decrements in several physical and mental HRQOL domains. Vulnerable subgroups included Hispanic patients, those with less education, and those without health insurance. AYAs also experienced higher levels of fatigue that were influenced by current symptoms and treatment. Future research should explore ways to address poor functioning in this understudied group.
Introduction: Cancer for adolescents and young adults (AYA) differs from younger and older patients; AYA face medical challenges while navigating social and developmental transitions. Research suggests that these patients are under or inadequately served by current support services, which may affect health-related quality of life (HRQOL).
Methods: We examined unmet service needs and HRQOL in the National Cancer Institute’s Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) study, a population-based cohort (n = 484), age 15–39, diagnosed with cancer 6–14 months prior, in 2007–2009. Unmet service needs were psychosocial, physical, spiritual, and financial services where respondents endorsed that they needed, but did not receive, a listed service. Linear regression models tested associations between any or specific unmet service needs and HRQOL, adjusting for demographic, medical, and health insurance variables.
Results: Over one-third of respondents reported at least one unmet service need. The most common were financial (16%), mental health (15%), and support group (14%) services. Adjusted models showed that having any unmet service need was associated with worse overall HRQOL, fatigue, physical, emotional, social, and school/work functioning, and mental health (p’s < 0.0001). Specific unmet services were related to particular outcomes [e.g., needing pain management was associated with worse overall HRQOL, physical and social functioning (p’s < 0.001)]. Needing mental health services had the strongest associations with worse HRQOL outcomes; needing physical/occupational therapy was most consistently associated with poorer functioning across domains.
Discussion: Unmet service needs in AYAs recently diagnosed with cancer are associated with worse HRQOL. Research should examine developmentally appropriate, relevant practices to improve access to services demonstrated to adversely impact HRQOL, particularly physical therapy and mental health services.
support service needs; health-related quality of life; adolescent; young adult oncology; cancer
This study examined the physical and mental health of 126,685 men and women age 65 or over, with and without cancer that completed a Medicare Health Outcomes Survey (MHOS) between 1998–2002. Cancer information was ascertained through NCI’s Surveillance, Epidemiology and End Results (SEER) program and linked to MHOS data. Results indicated that across most cancer types, cancer patients reported significantly more comorbid conditions and poorer physical and mental health compared with patients without cancer. Negative associations were most pronounced in those with two or more comorbidities and in those diagnosed with cancer within the past year.
As part of the National Cancer Institute’s AYA HOPE study, 296 AYAs completed an open-ended survey item asking them to describe their medical care or experience with cancer. Patient, provider, and system-level characteristics all appear to influence AYAs’ perceptions of their medical care. Participants attributed levels of satisfaction with care to the availability and communication of information, the management of side-effects, and the expediency and flexibility of treatments. Struggles with health insurance and finances were evident. Findings contribute to a better understanding of AYAs’ cancer treatment experiences and will inform improvements to oncology care for this population.
adolescent; young adult; medical care; qualitative research; psychosocial
Evidence suggests that inflammation may drive fatigue in cancer survivors. Research in healthy populations has shown reduced inflammation with higher dietary intake of ω-3 polyunsaturated fatty acids (PUFAs), which could potentially reduce fatigue. This study investigated fatigue, inflammation, and intake of ω-3 and ω-6 PUFAs among breast cancer survivors.
Six hundred thirty-three survivors (mean age, 56 years; stage I to IIIA) participating in the Health, Eating, Activity, and Lifestyle Study completed a food frequency/dietary supplement questionnaire and provided a blood sample assayed for C-reactive protein (CRP) and serum amyloid A (30 months after diagnosis) and completed the Piper Fatigue Scale and Short Form-36 (SF-36) vitality scale (39 months after diagnosis). Analysis of covariance and logistic regression models tested relationships between inflammation and fatigue, inflammation and ω-3 and ω-6 PUFA intake, and PUFA intake and fatigue, controlling for three incremental levels of confounders. Fatigue was analyzed continuously (Piper scales) and dichotomously (SF-36 vitality ≤ 50).
Behavioral (P = .003) and sensory (P = .001) fatigue scale scores were higher by increasing CRP tertile; relationships were attenuated after adjustment for medication use and comorbidity. Survivors with high CRP had 1.8 times greater odds of fatigue after full adjustment (P < .05). Higher intake of ω-6 relative to ω-3 PUFAs was associated with greater CRP (P = .01 after full adjustment) and greater odds of fatigue (odds ratio, 2.6 for the highest v lowest intake; P < .05).
Results link higher intake of ω-3 PUFAs, decreased inflammation, and decreased physical aspects of fatigue. Future studies should test whether ω-3 supplementation may reduce fatigue among significantly fatigued breast cancer survivors.
Few national data exist to assess primary care physicians’ (PCP) clinical practices with regard to childhood obesity.
To survey pediatricians and family practice physicians regarding their assessment, counseling, and management of diet, physical activity, and weight status among pediatric patients in the primary care setting.
A nationally representative cross-sectional survey of pediatricians and family practice physicians sampled from the American Medical Association (AMA) Masterfile was conducted in 2008 and analyzed in 2010. Outcomes included: Physicians’ self-reported practice behaviors regarding assessments of pediatric patients’ weight status, counseling of diet and physical activity, and referrals and follow-ups.
Response rate excluding physicians listed as “no-contact” by the AMA was 73.7% among pediatricians and 66.9% among family physicians. Less than 50% of all PCPs assessed BMI percentiles regularly in children. Eighteen percent of all PCPs reported referring children for further evaluation or management. Fifty-eight percent of all PCPs reported never, rarely, or only sometimes tracking patients over time concerning weight or weight-related behaviors. Pediatricians were more likely than family physicians to assess weight status and provide behavioral counseling (Ps<0.001).
Active PCP participation in assessing or managing childhood obesity in the primary care setting appears low relative to the frequency of the problem in the U.S.
Overweight and obesity are substantial problems in the U.S., but few national studies exist on primary care physicians’ (PCPs) clinical practices regarding overweight and obesity.
To profile diet, physical activity and weight control practice patterns of PCPs who treat adults.
A nationally representative survey of 1,211 PCPs sampled from the American Medical Association’s Masterfile was conducted in 2008 and analyzed in 2010. Outcomes included: PCPs’ assessment, counseling, referral, and follow-up of diet, physical activity and weight control in adult patients with and without chronic disease; PCPs’ use of pharmacologic treatments and surgical referrals for overweight and obesity.
The survey response rate was 64.5%. Half of PCPs (49%) reported recording BMI regularly. Fewer than 50% reported always providing specific guidance on diet, physical activity, or weight control. Regardless of patients’ chronic disease status, <10% of PCPs always referred patients for further evaluation/management, and <22% reported always systematically tracking patients over time concerning weight or weight-related behaviors. Overall, PCPs were more likely to counsel on physical activity than on diet or weight control (ps<0.05). More than 70% of PCPs reported ever using pharmacologic treatments to treat overweight and 86% had referred for obesity-related surgery.
PCPs’ assessment and behavioral management of overweight and obesity in adults is at a low level relative to the magnitude of the problem in the U.S.
To examine associations between recreational physical activity and quality of life (QOL) in a multi-ethnic cohort of breast cancer survivors, specifically testing whether associations are consistent across racial/ethnic groups after accounting for relevant medical and demographic factors that might explain disparities in QOL outcomes.
Data were collected from a population-based cohort of non-Hispanic White (n=448), Black (n=197), and Hispanic (n=84) breast cancer survivors (Stage 0-IIIa) in the Health, Eating, Activity, and Lifestyle (HEAL) Study. Physical activity was assessed approximately 2.5 years breast cancer diagnosis, with QOL assessed on average 6–12 months later. We used structural equation modeling to examine relationships between meeting recommended levels of physical activity and QOL, stratifying by race/ethnicity and adjusting for other demographic, comorbidity, and treatment effects.
Structural equation modeling indicated that meeting recommended levels of physical activity had significant positive associations with QOL for Black and for non-Hispanic White women, (p<0.05). Fewer Black women reported meeting recommended physical activity levels (p<0.001); but meeting recommendations was associated with better QOL. Post-hoc tests showed that meeting physical activity recommendations was specifically associated with better vitality, social functioning, emotional roles, and global QOL (all p’s< 0.05).
These results suggest that meeting recommended levels of physical activity is associated with better QOL in non-Hispanic White and Black breast cancer survivors. Findings may help support future interventions among breast cancer survivors and promote supportive care that includes physical activity; although more research is needed to determine these relationships among Hispanic and other ethnic minority women.
Physical Activity; Quality of Life; Ethnicity; Breast Cancer
Children's physical activity (PA) levels are commonly assessed in pediatric clinical research, but rigorous self-report assessment tools for children are scarce, and computer adaptive test implementations are rare. Our objective was to improve pediatric self-report measures of activity using semi-structured interviews with experts and children for conceptualization of a child-informed framework.
Semi-structured interviews were conducted to conceptualize physical activity, sedentary behaviors, and strengthening activities. We performed systematic literature reviews to identify item-level concepts used to assess these 3 domains.
We developed conceptual frameworks for each domain using words and phrases identified by children as relevant.
Semi-structured interview methods provide valuable information of children's perspectives and the ways children recall previous activities. Conceptualized domains of physical activity are based on the literature and expert views that also reflect children's experiences and understanding providing a basis for pediatric self-report instruments.
adolescent; child; female; health status; humans; information systems; male; outcome assessment (health care)/methods; parents; pediatrics/methods; physical activities; sedentary lifestyle; strengthening, quality of life
Children's activity level is commonly assessed in clinical research, but rigorous assessment tools for children are scarce. Our objectives were to improve pediatric activity self-report measures using qualitative methods to develop item pools that measure these concepts.
Based on the items generated from our conceptual framework development, we applied cognitive interviews and comprehensibility reviews to ensure children readily understood the items.
Our methods resulted in 129 unique items, physical activity (80 items), sedentary behaviors (23 items), and strengthening activities (26 items), that were comprehensible to children between the ages of 8 – 18 years. Comprehensibility review resulted in the deletion of 4 items.
The resultant item pools reflect children's experiences and understanding of the concepts of physical activity, sedentary behavior and strengthening activities. The item pools will undergo calibration using item response theory to support computer adaptive test administration of self and proxy reported outcomes.
adolescent; child; female; health status; humans; information systems; male; outcome assessment (health care)/methods; parents; pediatrics/methods; physical activities; sedentary lifestyle; strengthening, quality of life
cancer-related fatigue; breast cancer survivors; measurement; Piper Fatigue Scale; health-related quality of life
Lymphedema is a potentially debilitating condition that occurs among breast
cancer survivors. This study examines the incidence of self-reported lymphedema,
timing of lymphedema onset, and associations between sociodemographic, clinical
and lifestyle factors and lymphedema risk across racial-ethnic groups using data
from a multicenter, multiethnic prospective cohort study of breast cancer
survivors, the Health, Eating, Activity and Lifestyle Study.
A total of 666 women diagnosed with breast cancer staged as in situ, localized or regional disease at ages 35 to
64 years were recruited through the Surveillance, Epidemiology, and End Results
registries in New Mexico (non-Hispanic white and Hispanic white), Los Angeles
County (black), and Western Washington (non-Hispanic white) and followed for a
median of 10.2 years. We evaluated sociodemographic factors, breast cancer- and
treatment-related factors, comorbidities, body mass index (BMI), hormonal factors,
and lifestyle factors in relation to self-reported lymphedema by fitting Cox
proportional hazards models, estimating hazard ratios (HR) and 95% confidence
Over the follow-up period, 190 women (29%) reported lymphedema. The median
time from breast cancer diagnosis to onset of lymphedema was 10.5 months (range:
0.5 to 134.9 months). Factors independently associated with lymphedema were
total/modified radical mastectomy (versus partial/less than total mastectomy;
HR = 1.37, 95% CI: 1.01 to 1.85), chemotherapy (versus no chemotherapy; HR = 1.48,
95% CI: 1.09 to 2.02), no lymph nodes removed (versus ≥10 lymph nodes removed;
HR = 0.17, 95% CI: 0.08 to 0.33), pre-diagnostic BMI
≥30 kg/m2 (versus BMI
<25 kg/m2; HR = 1.59, 95% CI: 1.09 to 2.31), and
hypertension (versus no hypertension; HR = 1.49, 95% CI: 1.06 to 2.10). After
adjusting for demographics and breast cancer- and treatment-related factors, no
significant difference in lymphedema risk was observed across racial/ethnic
groups. Analyses stratified by race/ethnicity showed that hypertension and
chemotherapy were lymphedema risk factors only for black women.
Breast cancer patients who have undergone extensive surgery or extensive lymph
node dissection, or who have a higher BMI should be closely monitored for
detection and treatment of lymphedema. Further studies are needed to understand
the roles of chemotherapy and hypertension in the development of
Electronic supplementary material
The online version of this article (doi:10.1186/s13058-014-0414-x) contains supplementary material, which is available to authorized
Maintaining weight is important for better prognosis of breast cancer survivors. The associations between weight and cancer-related symptoms are not known. We examined associations among weight, weight change, inflammation, cancer-related symptoms, and health-related quality of life (HRQOL) in a cohort of stage 0-IIIA breast cancer survivors. Participants were recruited on average 6 months (2–12 months) after diagnosis. Height, weight, and c-reactive protein (CRP) were assessed at approximately 30 months post-diagnosis; cancer-related symptoms (chest wall and arm symptoms, vasomotor symptoms, urinary incontinence, vaginal symptoms, cognition/mood problems, sleep, sexual interest/function), and HRQOL (SF-36) were assessed at approximately 40 months post-diagnosis. Weight was measured at baseline in a subset. Data on 661 participants were evaluable for body mass index (BMI); 483 were evaluable for weight change. We assessed associations between BMI (<25.0, 25.0–29.9, ≥30.0 kg/m2), post-diagnosis weight change (lost ≥5%, weight change <5%, gained ≥5%), and CRP (tertile) with cancer-related symptoms and HRQOL using analysis of covariance (ANCOVA). Higher symptoms scores indicate more frequent or severe symptoms. Higher HRQOL scores indicate better HRQOL. Compared with those with BMI<25kg/m2, women with BMI ≥30 kg/m2 had scores that were: increased for arm symptoms (+25.0%), urinary incontinence (+40.0%), tendency to nap (+18.9%) and poorer physical functioning (−15.6%, all p<0.05). Obese women had lower scores in trouble falling asleep (−9.9%; p<0.05). Compared with weight change <5%, participants with ≥5% weight gain had lower scores in physical functioning (−7.2%), role-physical (−15.5%) and vitality (−11.2%), and those with weight loss ≥5% had lower chest wall (−33.0%) and arm symptom scores (−35.5%, all p<0.05). Increasing CRP tertile was associated with worse scores for chest wall symptoms, urinary incontinence, physical functioning, role-physical, vitality and physical component summary scores (all Ptrend<0.05). Future studies should examine whether interventions to maintain a healthy weight and reduce inflammation could alleviate cancer-related symptoms and improve HRQOL.
Breast cancer survivors; body weight; inflammation; cancer-related symptoms; quality of life
Posttraumatic growth (PTG) after cancer can minimize the emotional impact of disease and treatment; however, the facilitators of PTG, including support-seeking, are unclear. We examined the role of support-seeking on PTG among 604 breast cancer survivors ages 40–64 from the Health Eating, Activity, and Lifestyle (HEAL) Study. Multivariable linear regression was used to examine predictors of support-seeking (participation in support groups and confiding in healthcare providers) as well as the the relationship between support-seeking and PTG. Support program participation was moderate (61.1%) compared to the high rates of confiding in health professionals (88.6%), and African Americans (AA) were less likely to report participating than Non-Hispanic Whites (NHWs) (Odds Ratio: 0.14 (0.08, 0.23)). The mean (SD) PTG score was 48.8 (27.4) (range 0–105). Support program participation (β=10.4) and confiding in healthcare providers (β=12.9) were associated (p<0.001) with higher PTG. In analyses stratified by race/ethnicity, PTG was significantly higher in both NHW and AA support program participants (p<0.01), but not significantly higher in Hispanics/Latinas. Confiding in a healthcare provider was only associated with PTG for NHWs (p= 0.02). Support program experiences and patient-provider encounters should be examined to determine which attributes facilitate PTG in diverse populations.
breast cancer; cancer survivor; support group; patient-provider support; posttraumatic growth
Limited research exists on the social information needs of adolescents and young adults (AYAs, aged 15–39 at diagnosis) with cancer.
The Adolescent and Young Adult Health Outcomes and Patient Experiences (AYA HOPE) Study recruited 523 patients to complete surveys 6–14 months after cancer diagnosis. Participants reported information needs for talking about their cancer experience with family and friends (TAC) and meeting peer survivors (MPS). Multiple logistic regression was used to examine factors associated with each need.
Approximately 25% (118/477) and 43% (199/462) of participants reported a TAC or MPS need respectively. Participants in their 20s (vs. teenagers) were more likely to report a MPS need (p=0.03). Hispanics (vs. non-Hispanic whites) were more likely to report a TAC need (p=0.01). Individuals who did not receive but reported needing support groups were about 4 and 13 times as likely to report TAC and MPS needs respectively (p<0.05). Participants reporting high symptom burden were more likely to report TAC and MPS needs (p<0.01), and those reporting fair/poor quality of care were more likely to report a TAC need (p<0.01). Those reporting that cancer had an impact on several key relationships with family and friends were more likely to report social information needs.
Social information needs are higher in AYAs diagnosed in their 20s, in Hispanics, among those reporting high symptom burden and/or lower quality of care, and in individuals not in support groups. Efforts should be made to develop interventions for AYAs in most need of social information and support.
survivorship; social support; information needs; support group; peer support; communication
Physical activity is associated with reduced mortality and higher quality of life in breast cancer survivors; however, limited data on the prevalence of activity and long-term trends after diagnosis are available.
A multi-ethnic cohort of 631 women (18–64 years) with stage 0-IIIA breast cancer were followed for 10 years. Recreational aerobic activity (MET-hrs/week) was ascertained for the year before diagnosis (baseline), 24 months, 5 and 10 years after enrollment. Women were classified according to U.S. physical activity guidelines (≥150 mins/week moderate or ≥75 mins/week vigorous activity). The odds ratios (OR) for meeting guidelines at 5 and 10 years according to baseline factors was estimated using logistic regression. The change in MET-hrs/wk was predicted using linear regression.
Pre-diagnosis, 34% of women met physical activity guidelines; 34.0%, 39.5%, and 21.4% met guidelines at 24 months, 5 years, and 10 years post-enrollment, respectively. Fewer than 8% of survivors met guidelines at all follow-up periods. Over 10 years, recreational aerobic activity decreased by a mean(SD) 4.3(16.2) MET-hrs/wk.. Meeting guidelines pre-diagnosis was strongly associated with meeting guidelines at 5 years [OR (95% CI): 2.76 (1.85–4.1)] and 10 years [OR (95% CI): 3.35 (2.13–5.28)]. No other demographic or prognostic factors were significantly associated with the 10-year change in MET-hrs/wk.
The vast majority of early breast cancer survivors do not meet national exercise recommendations 10 years post-diagnosis.
Physical activity levels are low in breast cancer survivors across the 10 years post-diagnosis, yet the predictors of activity in this population remain poorly understood.
exercise; women; cancer survivorship; lifestyle
Elevated circulating insulin-like growth factor-1 (IGF-1), a breast epithelial cell mitogen, is associated with breast cancer development. However, its association with breast cancer survival is not established. Circulating concentrations of IGF-1 are controlled via binding proteins, including IGF Binding Protein-3 (IGFBP-3), that may modulate the association of IGF1 with breast-cancer outcomes.
We measured IGF-1 and IGFBP-3 concentrations in serum from 600 women enrolled in the Health, Eating, Activity, and Lifestyle (HEAL) Study, a multiethnic, prospective cohort study of women diagnosed with stage I-IIIA breast cancer. We evaluated the association between IGF-1 and IGFBP-3, and as a ratio, modeled using quintile cut-points, with risk of breast cancer-specific (n=42 deaths) and all-cause mortality (n=87 deaths) using Cox proportional hazards models. In models adjusted for body mass index, ethnicity, tamoxifen use at time of blood draw, treatment received at diagnosis, and IGFBP-3, women in the highest quintile of IGF-1 level had an increased risk of all-cause mortality (Hazard Ratio (HR)=3.10 95% CI 1.21-7.93, p=0.02), although no dose-response association was evident. The IGF-1/IGFBP-3 ratio, an indicator of free IGF-I levels, was significantly associated with increasing risk of all-cause mortality (HR=2.83 95% CI 1.25-6.36 Ptrend=0.01, upper vs. lower quintile) in a fully adjusted model.
In conclusion, high serum levels of IGF-1 and the IGF-1/IGFBP-3 ratio were associated with increased risk of all-cause mortality in women with breast cancer. These results need to be confirmed in larger breast cancer survivor cohorts.
IGF-1; IGFBP-3; breast cancer survival; mortality
Many cancer survivors experience declines in health-related quality of life (HRQOL) and increases in fatigue as a result of cancer and its treatment. Exercise is linked to improvements in these outcomes, but little is known about the role of sedentary behavior. In a large, ethnically-diverse cohort of breast cancer survivors, we examined the relationship between sedentary time, HRQOL, and fatigue, and examined if that relationship differed by recreational moderate-vigorous physical activity (MVPA) level.
Participants were 710 women diagnosed with stage 0-IIIA breast cancer in the Health, Eating, Activity, and Lifestyle Study. Women completed questionnaires at approximately 30-months postdiagnosis (sedentary time; recreational MVPA) and 41-months postdiagnosis (HRQOL; fatigue). In multivariate models, we regressed these outcomes linearly on quartiles of daily sedentary time, and a variable jointly reflecting sedentary time quartiles and MVPA categories (0; > and <; ≥9 MET-hrs/wk).
Sedentary time was not independently related to subscales or summary scores of HRQOL or fatigue. Additionally, comparisons of women with high vs. low (Q4:Q1) sedentary time by MVPA level did not result in significant differences in HRQOL or fatigue.
In this breast cancer survivor cohort, self-reported sedentary time was not associated with HRQOL or fatigue, 3.5 years postdiagnosis.
health behavior; survivorship; epidemiology
Sleep duration among breast cancer survivors correlates with fatigue, depression, and health-related quality of life (HRQOL); however, this has not been studied longitudinally. This study investigated patterns of sleep duration change across the early breast cancer survivorship period, their demographic and clinical predictors, and their relationships with subsequent cancer-related symptoms and HRQOL.
Breast cancer survivors (n=572), were assessed 6 months post-diagnosis (current sleep & retrospective reports of pre-diagnosis sleep), 30 months post-diagnosis (sleep), and 39 months post-diagnosis (symptoms, HRQOL). Sleep duration change was determined by examining sleep at each time point in relation to published norms. Analysis of variance and logistic regression models tested demographic and clinical differences between the sleep change groups; linear regression models tested differences in symptoms and HRQOL.
Half of the survivors reported no sleep duration change over time; however, 25% reported sleep changes indicating a temporary (5.6%), late-occurring (14%), or sustained (5.9%) change. Survivors reporting sustained or temporary sleep changes were more likely to have been treated with chemotherapy (OR=2.62, p<.001) or gained weight after diagnosis (OR=1.82, p=.04) than those with no sleep change. Sustained sleep changes were related to greater subsequent severity, affective, and sensory aspects of fatigue (βs=2.0, 2.3, 1.8; all p <.0001) and lower vitality (β=−10.8, p=.005).
Survivors treated with chemotherapy and those who gain weight after diagnosis may have increased risk for sustained sleep duration changes, which may increase their fatigue. These results point to the need for routine assessment of sleep as part of survivorship care.
Breast Cancer; Survivors; Long-term Effects; Sleep; Quality of Life
We describe the development and validation of the PROMIS Sexual Function and Satisfaction (PROMIS SexFS) measures version 1.0 for cancer populations.
To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS® Network.
Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient reported outcome (PRO) measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item response theory and evaluated for reliability and validity.
Main Outcome Measures
The PROMIS Sexual Function and Satisfaction (PROMIS SexFS) measures version 1.0 include 79 items in 11 domains: interest in sexual activity, lubrication, vaginal discomfort, erectile function, global satisfaction with sex life, orgasm, anal discomfort, therapeutic aids, sexual activities, interfering factors, and screener questions.
In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different), convergent validity (strong correlations between scores on PROMIS and scores on conceptually-similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (inter-class correlations from 2 administrations of the instrument, 1 month apart).
The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.
patient-reported outcome measures; sexual function; satisfaction; cancer; quality of life; male and female sexual dysfunction
Brief, valid measures of fatigue, a prevalent and distressing cancer symptom, are needed for use in research. This study’s primary aim was to create a shortened version of the revised Piper Fatigue Scale (PFS-R) based on data from a diverse cohort of breast cancer survivors. A secondary aim was to determine whether the PFS captured multiple distinct aspects of fatigue (a multidimensional model) or a single overall fatigue factor (a unidimensional model).
Breast cancer survivors (n=799; stages in situ through IIIa; ages 29–86 yrs) were recruited through 3 SEER registries (New Mexico, Western Washington, and Los Angeles, CA) as part of the Health, Eating, Activity, and Lifestyle (HEAL) study. Fatigue was measured approximately 3 years post-diagnosis using the 22-item PFS-R that has 4 subscales (Behavior, Affect, Sensory, and Cognition). Confirmatory factor analysis was used to compare unidimensional and multidimensional models. Six criteria were used to make item selections to shorten the PFS-R: scale’s content validity, items’ relationship with fatigue, content redundancy, differential item functioning by race and/or education, scale reliability, and literacy demand.
Factor analyses supported the original 4-factor structure. There was also evidence from the bi-factor model for a dominant underlying fatigue factor. Six items tested positive for differential item functioning between African-American and Caucasian survivors. Four additional items either showed poor association, local dependence, or content validity concerns. After removing these 10 items, the reliability of the PFS-12 subscales ranged from 0.87–0.89, compared to 0.90–0.94 prior to item removal.
The newly developed PFS-12 can be used to assess fatigue in African-American and Caucasian breast cancer survivors and reduces response burden without compromising reliability or validity. This is the first study to determine PFS literacy demand and to compare PFS-R responses in African-Americans and Caucasian breast cancer survivors. Further testing in diverse populations is warranted.
fatigue; breast cancer survivors; patient-reported outcomes; Piper Fatigue Scale; psychometrics
To assess primary care physicians’ (PCPs) knowledge of energy balance related guidelines and the association with sociodemographic characteristics and clinical care practices.
As part of the 2008 U.S. nationally representative National Survey of Energy Balance Related Care among Primary Care Physicians (EB-PCP), 1,776 PCPs from four specialties who treated adults (n=1,060) or children and adolescents (n=716) completed surveys on sociodemographic information, knowledge of energy balance guidelines, and clinical care practices.
EB-PCP response rate was 64.5%. For PCPs treating children, knowledge of guidelines for healthy BMI percentile, physical activity, and fruit and vegetables intake was 36.5%, 27.0%, and 62.9%, respectively. For PCPs treating adults, knowledge of guidelines for overweight, obesity, physical activity, and fruit and vegetables intake was 81.4%, 81.3%, 70.9%, and 63.5%, respectively. Generally, younger, female physicians were more likely to exhibit correct knowledge. Knowledge of weight-related guidelines was associated with assessment of body mass index (BMI) and use of BMI-for-age growth charts.
Knowledge of energy balance guidelines among PCPs treating children is low, among PCPs treating adults it appeared high for overweight and obesity-related clinical guidelines and moderate for physical activity and diet, and was mostly unrelated to clinical practices among all PCPs.
Energy balance; primary care; guidelines; physical activity; nutrition; body mass index; knowledge
To examine the benefits of physical activity (PA) on diseases with a long developmental period, it is important to determine reliability of long-term PA recall.
We investigated 15-year reproducibility of PA recall. Participants were 3605 White and African-American adults in the Coronary Artery Risk Development in Young Adults study, aged 33–45 at the time of recall assessment. Categorical questions assessed PA before and during high school (HS) and overall PA level at Baseline, with the same timeframes recalled 15 years later. Moderate- and vigorous-intensity scores were calculated from reported months of participation in specific activities.
HS PA recall had higher reproducibility than overall PA recall (weighted kappa = 0.43 vs. 0.21). Correlations between 15-year recall and Baseline reports of PA were r = 0.29 for moderate-intensity scores, and r = 0.50 for vigorous-intensity. Recall of vigorous activities had higher reproducibility than moderate-intensity activities. Regardless of number of months originally reported for specific activities, most participants recalled either no activity or activity during all 12 months.
PA recall from the distant past is moderately reproducible, but poor at the individual level, among young and middle aged adults.
To investigate whether the association between physical activity and serum 25-hydroxyvitamin D (25(OH)D) concentrations is independent of sun exposure, body size, and other potential explanatory variables.
Using data from a sample of 1,343 postmenopausal women, from the Women’s Health Initiative, linear regression was used to examine the associations of duration (minutes/week) of recreational activity and of yard work with 25(OH)D concentrations (nmol/L).
In age-adjusted analyses, positive associations were observed between 25(OH)D concentrations and both duration of recreational physical activity (β=0.71, SE(0.09), P<0.001) and yard work (β=0.36, SE(0.10), P=0.004). After further adjustment for vitamin D intake, self-reported sunlight exposure, waist circumference, and season of blood draw, 25(OH)D was significantly associated with recreational activity (β=0.21, SE(0.09), P=0.014) but not with yard work (β=0.18, SE(0.09), P=0.061). Interactions were observed between season and both recreational activity (Pinteraction=0.082) and yard work (Pinteraction=0.038) such that these activity-25(OH)D associations were greater during summer/fall compared to winter/spring. Self-reported sunlight exposure and measures of body size did not modify the associations.
The observed age-adjusted activity-25(OH)D associations were attenuated after adjusting for explanatory variables and were modified by season of blood draw. Adopting a lifestyle that incorporates outdoor physical activity during summer/fall, consuming recommended amounts of vitamin D, and maintaining a healthy weight may improve or maintain vitamin D status in postmenopausal women.
25-hydroxyvitamin D; vitamin D; serum; sunlight exposure; physical activity; epidemiology; women