ImportanceData characterizing the severity and changing prevalence of bone mineral density (BMD) deficits and associated nonfracture consequences among childhood cancer survivors decades after treatment are lacking.ObjectiveTo evaluate risk for moderate and severe BMD deficits in survivors and to identify long-term consequences of BMD deficits.Design, Setting, and ParticipantsThis cohort study used cross-sectional and longitudinal data from the St Jude Lifetime (SJLIFE) cohort, a retrospectively constructed cohort with prospective follow-up. Participants in SJLIFE are adult survivors of childhood cancer who were diagnosed between 1962 and 2012 and survived 5 years or more from diagnosis. Data were collected from November 2007 to June 2020 and analyzed from January 2021 to November 2023.ExposuresChildhood cancer therapy exposures, clinically ascertained comorbid conditions, substance use, and sedentary lifestyle.Main Outcomes and MeasuresBMD was evaluated using lumbar quantitative computed tomography and classified by age- and sex-specific z scores with moderate (≤−1 SD) or severe (≤−2 SD) deficits. Multivariable logistic regression estimated odds ratios (ORs), attributable fractions (AFs), and associations between BMD deficits and long-term sequelae (social, functional, and quality of life [QOL]).ResultsAmong 3919 five-year survivors (median [range] age, 31.7 [18.0-69.9] years; 2063 [52.6%] male; 105 [2.7%] Hispanic, 607 [15.5%] non-Hispanic Black, and 3153 [80.4%] non-Hispanic White), prevalence of moderate or severe BMD deficits were 21.7% (95% CI, 20.4%-23.0%) and 6.9% (95% CI, 6.1%-7.7%), respectively. Treatment exposures (including age at diagnosis), comorbid conditions, and smoking and sedentary behavior explained 18.5%, 10.2%, and 7.0% of moderate and 55.4%, 51.1%, and 9.9% of severe deficits. Severe deficits were associated with 30 Gy or greater cranial radiotherapy (CRT) (OR, 5.22; 95% CI, 3.74-7.30; AF, 33.0%), testicular or pelvic radiation (OR, 1.70, 95% CI, 1.19-2.44; AF, 11.5%), hypogonadism (OR, 3.27, 95% CI, 2.35-4.55; AF, 25.1%), growth hormone deficiency (OR, 5.28, 95% CI, 3.68-7.56; AF, 26.0%), smoking (OR, 1.71, 95% CI, 1.21-2.43; AF, 6.7%), and sedentary behavior (OR, 2.06, 95% CI, 1.15-3.69; AF, 6.2%). CRT exposure increased risk for declining BMD (OR, 2.94, 95% CI, 1.46-5.91; AF, 8.8%). Survivors with deficits were less likely to live alone and to be employed and more likely to require personal care assistance and to report depressive symptoms and poor QOL.Conclusions and RelevanceWhile treatment exposures were associated with long-term BMD deficits, modifiable risk factors, including smoking, sedentary behavior, hypogonadism, and growth hormone deficiency, suggest feasible targets for intervention.
BACKGROUND:Lifestyle is associated with meningioma risk in the general population. AIMS:We assessed longitudinal associations between lifestyle-associated factors and subsequent meningiomas in childhood cancer survivors. METHODS AND RESULTS:Childhood cancer survivors age ≥18 years in the St. Jude Lifetime Cohort Study were evaluated for body composition, self-reported physical activity, cardiopulmonary fitness, muscle strength, smoking, and alcohol consumption at baseline. Time to first meningioma analyses were performed, adjusted for sex, age at diagnosis and baseline assessment, treatment decade, and childhood cancer treatment exposures. The study included 4,072 survivors (47% female; [mean (SD)] 9 (6) years at diagnosis; 30 (8.5) years at the start of follow-up, with 7.0 (3.3) years of follow-up). 30% of the participants were survivors of acute lymphoblastic leukemia and 29% of the participants had received cranial radiation. During follow-up, 90 participants developed ≥1 meningioma, of whom 73% were survivors of acute lymphoblastic leukemia, with cranial radiation being the strongest risk factor (relative risk [RR] 29.7, 95% confidence interval [CI] 10.6-83.2). Muscle strength assessed by knee extension was associated with a lower risk of developing a meningioma in the adjusted analyses (RR 0.5, 95% CI 0.2-1.0, p = 0.04 for quartiles 3-4 vs. 1). No other lifestyle-associated variable was associated with subsequent meningioma. CONCLUSION:Independent of cranial radiation, muscle strength was associated with a lower risk of developing a subsequent meningioma in childhood cancer survivors.
Perceived cancer impact (PCI) is the degree to which one feels cancer has impacted one’s life. It is unknown if PCI is associated with health behaviors. The aim of this study is to determine associations between PCI and health behaviors in childhood cancer survivors. Participants were ≥ 5-year survivors enrolled in the St. Jude Lifetime (SJLIFE) cohort. The Brief Cancer Impact (BCIA) assessed PCI across four domains (caregiving/finances, diet/exercise, social/emotional functioning, religiosity). Responses were categorized as negative, neutral, or positive impact. Smoking, risky drinking, illicit drug use, and diet quality data were obtained via self-report. Physical activity (PA) was assessed via self-report and actigraphy. Cross-sectional and longitudinal associations between PCI and health behaviors were evaluated via multivariable logistic regression. A total of 3623 participants (mean age 30.4 ± 8.3 years, 49.6
Introduction: This study aimed to assess longitudinal associations between lifestyle and subsequent malignant neoplasms (SMNs) in young adult childhood cancer survivors. Methods: Members of the St. Jude Lifetime Cohort (SJLIFE) aged ≥18 years and surviving ≥5 years after childhood cancer diagnosis were queried and evaluated for physical activity, cardiorespiratory fitness (CRF), muscle strength, body mass index (BMI), smoking, risky drinking, and a combined lifestyle score. Time to first SMN, excluding nonmalignant neoplasms and nonmelanoma skin cancer, was the outcome of longitudinal analysis. Results: Survivors (n = 4072, 47% female, 29% smokers, 37% risky drinkers, 34% obese, and 48% physically inactive) had a mean (SD) time between baseline evaluation and follow-up of 7.0 (3.3) years, an age of 8.7 (5.7) years at diagnosis, and an age of 30 (8.4) years at baseline lifestyle assessment. Neither individual lifestyle factors nor a healthy lifestyle score (RR 0.8, 0.4–1.3, p = 0.36) were associated with the risk of developing an SMN. Conclusions: We did not identify any association between lifestyle factors and the risk of SMN in young adult childhood cancer survivors.
Background: Patient activation describes a willingness to take action to manage health and is associated with health outcomes. The purpose of this study was to characterize patient activation and its association with psychological outcomes and health behaviors in childhood cancer survivors. Methods: Participants were from the St. Jude Lifetime Cohort Study (SJLIFE). Activation levels (1–4, 4 = highest activation) were measured with the Patient Activation Measure (PAM). Psychological outcomes and health behaviors were obtained via self-report. Cognitive function was assessed by trained examiners. ANOVA or chi-squared tests were utilized to assess group-level differences in activation. Multivariable regression models were used to assess associations between PAM scores and outcomes of interest. Results: Among 2708 survivors and 303 controls, more survivors endorsed lower activation levels than the controls (11.3 vs. 4.7% in level 1) and fewer survivors endorsed the highest level of activation than the controls (45.3 vs. 61.5% in level 4). Not endorsing depression (OR: 2.37, 95% CI 1.87–2.99), anxiety (OR: 2.21, 95% CI 1.73–2.83), and somatization symptoms (OR: 1.99, 95% CI 1.59–2.50), general fear (OR: 1.45, 95% CI 1.23–1.71) and body-focused (OR: 2.21, 95% CI 1.83–2.66), cancer-related worry, and physical (OR: 2.57, 95% CI 2.06–3.20) and mental (OR: 2.08, 95% CI 1.72–2.52) HRQOL was associated with higher levels of activation. Lower activation was associated with not meeting physical activity guidelines (OR: 2.07, 95% CI 1.53–2.80). Conclusions: Survivors endorsed lower activation levels than peers. Interventions to improve physical and psychological health outcomes could leverage these results to identify survivors who benefit from support in patient activation.
Aminoglycoside antibiotic treatment during childhood cancer may lead to sensorineural hearing loss (SNHL), vestibular dysfunction, and poor postural control, impacting survivors’ mobility. Mobility limitations reduce physical activity (PA) levels and health related quality of life (HRQoL). PURPOSE: To identify the independent contribution of aminoglycosides on SNHL, vestibular dysfunction and poor postural control; and assess the impact of SNHL, vestibular dysfunction, and poor postural control on PA and HRQoL. METHODS: SNHL was evaluated with otoscopy, tympanometry, and pure-tone audiometry, and graded using the International Society of Pediatric Oncology Boston Toxicity Scale. Grades >2 were considered impaired. Posturography determined vestibular function and postural control, with scores of <93% and < 70% considered impaired, respectively. Reporting <150 minutes per week of moderate to vigorous PA was considered low PA. Scoring <40 on the Physical Component Summary of the Medical Outcomes Survey Short-Form 36 was considered poor HRQoL. Generalized linear models, adjusted for age, sex, vincristine and platinum exposures examined associations between aminoglycoside exposure, SNHL, vestibular dysfunction, and postural control. Logistic regressions, adjusted for age, smoking, and sex examined associations between SNHL, vestibular dysfunction, PA levels, postural control and HRQoL. RESULTS: 18.1%, 10.9% and 12.9% of survivors not exposed to cranial radiation (n = 2,534, 51.6% male, age 33.2 ± 9.8 years, 60.1% leukemia/lymphoma, 39.9% non-CNS sold tumors) had SNHL, vestibular dysfunction, or poor postural control respectively. Aminoglycoside exposure increased risk of vestibular dysfunction (RR: 1.73; 95% CI 1.13, 2.66) and poor postural control (RR: 1.41, 95% CI: 1.11, 1.79). Vestibular dysfunction (OR: 1.65; 95% CI: 1.34, 2.05) and poor postural control (OR: 2.11; 95% CI: 1.64, 2.71) increased the odds of low PA. Vestibular dysfunction (OR: 2.24; 95% CI: 1.71, 2.93) was associated with poor HRQoL. CONCLUSION: Survivors treated with aminoglycosides are at risk for vestibular dysfunction and poor balance, contributing to low PA and poor HRQoL. Interventions to increase PA, tailored to survivors with vestibular dysfunction, should be evaluated.
PURPOSE: Perceived cancer impact (PCI) is the degree to which one feels cancer has impacted domains of life. In childhood cancer survivors, females are more likely to endorse positive PCI on diet and exercise. It is unknown if PCI is associated with health behavior, such as physical activity (PA). The aims of this study were to determine overall and sex-stratified associations between PCI and objectively measured PA in survivors. METHODS: Participants were 5+ year survivors recruited from a St. Jude Lifetime (SJLIFE) ancillary study. PCI was measured using the Brief Cancer Impact Assessment (BCIA) PA item. Likert responses were categorized as negative, neutral, or positive impact. Moderate and vigorous physical activity (MVPA) minutes were captured via accelerometry and categorized into meeting or not meeting American College of Sports Medicine (ACSM) PA guidelines (150 moderate and/or 75 vigorous minutes/week). Associations between PCI and MVPA were evaluated via multivariable logistic regression adjusting for sex, race, diagnosis, current age, age at diagnosis, grade 3-4 chronic conditions (National Cancer Institute Common Terminology Criteria for Adverse Events, version 4.03 (modified)), perceived stress (Perceived Stress Scale), and psychological distress (Global Symptoms Index of Brief Symptom Inventory-18). RESULTS: Among 992 survivors (mean age 36 ± 7 years, 47% female, 84% white), 24% met MVPA guidelines. Among survivors, 30% reported negative impact, 17% reported positive impact, and 52% reported neutral impact of cancer on PA. Female survivors (OR: 3.55, CI 2.53-4.99), CNS tumor survivors (OR: 1.91, CI 1.02-3.56), and survivors endorsing negative (OR: 2.08, CI 1.29-3.35) or neutral PCI (OR 1.78, CI 1.18-2.69) were less likely to meet PA guidelines. In sex-stratified models, odds for not meeting PA guidelines were higher in females with endocrine conditions (OR: 1.78 CI 1.00-3.17) and negative PCI (OR: 2.54 CI 1.09-5.90). Odds for not meeting PA guidelines were higher in males with negative (OR: 1.97, CI 1.08-3.58) and neutral PCI (OR: 2.02, CI 1.20-3.40). CONCLUSION: PCI on PA adversely impacts PA behavior in childhood cancer survivors. Future studies should consider factors contributing to PCI on PA in survivors. Assessing and addressing these factors could lead to improvements in PA behavior.
ABSTRACT Purpose Cancer-related worry (CRW; concerns related to cancer and its late effects) is prevalent among childhood cancer survivors. Elevated CRW has been associated with self-reported suboptimal physical activity. The aim of this investigation was to describe associations between CRW and objectively assessed physical activity in childhood cancer survivors. Methods CRW was assessed at a baseline evaluation using six survey items. Weekly minutes of moderate and vigorous physical activity were captured by actigraphy 5.25 (3.8–8.0) yr later. Factor analysis was used to identify types of worry; multiple regression determined independent associations between CRW and moderate and vigorous physical activity adjusting for sex, race, diagnosis, age at baseline, anxiety level at baseline, self-reported physical activity at baseline, and pain interference at baseline. Results Participants (n = 1223) were an average of 30.9 (SD, 6.9) yr at baseline and 36.1 (SD, 7.1) yr at follow-up. Thirty-seven percent were survivors of leukemia, 26% of non-CNS solid tumors, 19% of lymphoma, 11% of CNS tumors, and 6% of other malignancies. Two types of CRW were identified: “body-focused” and “general fear.” Body-focused CRW (β = −19.6, P = 0.012), endorsing pain interference (β = −27.7, P = 0.002) at baseline, and having a diagnosis of CNS tumor (β = −41.3, P = 0.0003) or non-CNS solid tumor (β = −19.4, P = 0.02) were negatively associated with physical activity at follow-up. Conclusions CRW related to bodily function and appearance is associated with decreased physical activity. Clinicians should consider the potential negative impact of CRW on physical activity levels and provide behavioral counseling.
Background: Successful translation of evidence-based exercise training interventions from research to clinical practice depends on the balance of treatment fidelity and adaptability when delivering the exercise program across settings. The current paper summarizes fidelity of study design, provider training, and intervention delivery strategies from best practice recommendations, and reports challenges experienced and adaptations instrumented by behavioral coaches delivering the multi-site Supervised versus Telerehabilitation Exercise Programs for Multiple Sclerosis (STEP for MS) Trial. Methods: Using a reflexive thematic analysis approach, open-ended survey questions were analyzed to explore experiences of behavioral coaches, transcripts from team meetings among behavioral coaches, and notes from audits of one-on-one sessions between behavioral coaches and participants. Results: Themes related to the fidelity of study design and delivery of the STEP for MS Trial included adaptations to the intervention itself (e.g., completion of virtual supervised exercise sessions with behavioral coaches in place of face-to-face sessions during COVID-19 pandemic restrictions), modification of exercise equipment, and adjustments of program delivery. The adjustments of program delivery reported by behavioral coaches included increasing program fit, maintaining engagement, and addressing participant safety concerns; however, these adaptations did not jeopardize the content of the essential elements of the program model. Conclusions: The current paper demonstrates that when best practice recommendations are implemented, it is possible to address challenges to study design and evidence-based intervention delivery in ways that adaptations to overcome real-world obstacles can be accomplished without compromising fidelity.
BACKGROUND:Promoting physical activity soon after treatment for childhood cancer may benefit health because sedentary lifestyle during curative therapy may perpetuate physical and emotional complications. The primary goals of this study are to evaluate the effects of a 6-month web-based, rewards-based physical activity intervention on fitness, biomarkers of cardiometabolic health, inflammation, adipokine status, quality of life and school attendance, and determine if effect of intervention on markers of cardiometabolic health is mediated by changes in fitness. The primary outcome of interest is fitness (physiological cost index, six-minute walk test) measured at end of intervention. METHODS:This ongoing study is a two-arm, prospective, randomized design with accrual goals of 192 children for intervention and control groups. Children ≥8 years and < 16 years of age, not meeting recommended levels of physical activity, who completed therapy within the past 12 months are eligible. Both groups receive: 1) educational materials encouraging physical activity, 2) activity monitor, 3) access to web-based interface designed to motivate physical activity, 4) rewards based on physical activity levels, and 5) access to their activity data on the web-interface. Those randomized to intervention: 1) can view others' activity and interact with other participants, and 2) receive rewards based on physical activity levels throughout the intervention (vs. at the end of the intervention for control group). CONCLUSION:Unique, scalable, and portable physical activity interventions that motivate young survivors are needed. This study will inform future web-based physical activity interventions for children with cancer by demonstrating effects of rewards and social interaction. CLINICAL TRIALS:ClinicalTrials.gov Identifier: NCT03223753; COG Identifier: ALTE1631.
Background: Promoting physical activity soon after treatment for childhood cancer may benefit health because sedentary lifestyle during curative therapy may perpetuate physical and emotional complications. The primary goals of this study are to evaluate the effects of a 6-month web-based, rewards-based physical activity intervention on fitness, biomarkers of cardiometabolic health, inflammation, adipokine status, quality of life and school attendance, and determine if effect of intervention on markers of cardiometabolic health is mediated by changes in fitness. The primary outcome of interest is fitness (physiological cost index, six-minute walk test) measured at end of intervention. Methods: This ongoing study is a two-arm, prospective, randomized design with accrual goals of 192 children for intervention and control groups. Children >= 8 years and < 16 years of age, not meeting recommended levels of physical activity, who completed therapy within the past 12 months are eligible. Both groups receive: 1) educational materials encouraging physical activity, 2) activity monitor, 3) access to web-based interface designed to motivate physical activity, 4) rewards based on physical activity levels, and 5) access to their activity data on the web-interface. Those randomized to intervention: 1) can view others' activity and interact with other participants, and 2) receive rewards based on physical activity levels throughout the intervention (vs. at the end of the intervention for control group). Conclusion: Unique, scalable, and portable physical activity interventions that motivate young survivors are needed. This study will inform future web-based physical activity interventions for children with cancer by demonstrating effects of rewards and social interaction. Clinical trials: ClinicalTrials.gov Identifier: NCT03223753; COG Identifier: ALTE1631.
Purpose:: This study is a secondary analysis of data from a mixed methods exploration of fatigue in people with multiple sclerosis (MS), a chronic autoimmune disease affecting the central nervous system. During initial analysis, worry emerged during discussions of the fatigue experience. The purpose of this study is to explore worry in relationship to exercise and physical activity behavior. Methods:: Mixed methods were used to address the research question. 55 people with MS provided demographic and survey data (habitual physical activity, body perception, functioning). 35 participated in semi-structured interviews on the topics of fatigue, body sensations, emotions, and their effects on physical activity. Qualitative data were analyzed utilizing constructivist grounded theory. Quantitative data were analyzed utilizing multiple regression. Results:: Qualitative theory described participants' thoughts and experiences regarding the consequences of fatigue during activity, and how they appear to influence subsequent actions. Worry played a critical role in thought processes regarding physical activity. Aspects of body perception were weak quantitative predictors of physical activity behavior after control of physical functionality. Conclusions:: The most significant finding of this study was the description and dialogue about worry as a factor that shapes perceptions of the benefits and value of exercise and physical activity. Physical activity practitioners could benefit from seeking to understand physical-activity-related worry when examining physical activity behavior and designing programming.
BACKGROUND:Fatigue is a particularly debilitating symptom for people with multiple sclerosis (MS). Although personality traits and MS have been studied, interoception and emotional susceptibility and their links to fatigue have not yet been explored.METHODS:Study participants provided demographic information and completed standardized patient-reported outcomes of walking function, physical activity, subjective fatigue, interoceptive awareness, and emotional susceptibility. A subset of participants participated in semistructured interviews discussing fatigue, body sensations, emotions, and their effects on exercise. Quantitative data were analyzed using multiple regression. Qualitative data were analyzed using thematic analysis.RESULTS:Mean ± SD Fatigue Severity Scale scores (5.0 ± 1.3) indicated that fatigue was a problematic symptom. Mean ± SD Multidimensional Assessment of Interoceptive Awareness, Version 2 (2.8 ± 0.6) and Emotional Susceptibility Scale (3.0 ± 1.0) scores indicated lower levels of interoceptive awareness and emotional susceptibility. Quantitative data indicated no relationship between fatigue and interoceptive awareness (β = -0.20; P = .88) and emotional susceptibility (β = 0.03; P = .83), and neither were these related to physical activity (β = -0.07; P = .64). Qualitative themes indicated strong fatigue experiences involving the whole body and individual limbs, anger and frustration, and effects on physical activity.CONCLUSIONS:Physically active people with MS report strong sensations of fatigue closely linked to frustration and helplessness. There was agreement between qualitative and quantitative assessments of fatigue but dissonance regarding interoceptive awareness and physical activity. The practice of clinicians, particularly those involved with facilitating or planning physical activity for persons with MS, would benefit from these findings about fatigue.
PURPOSE:Adopting and continuing physical activity (PA) is critical for the management of multiple sclerosis (MS). The role that spouses or partners play in the adoption and continuation of PA in women with MS has yet to be explored. METHODS:Nine women with MS and their respective spouses volunteered for in-depth, semi-structured interviews that lasted approximately an hour. Interviews were transcribed and analyzed thematically. Spouse interview data were used to contextualize and provide a richer understanding of themes from women with MS. RESULTS:Three themes were constructed from analysis of the interview data with women with MS: support, motivation to perform PA, and PA prior to MS. Support was most discussed and took the form joining in PA, supporting PA accomplishments or information sharing, assisting with PA, and encouraging separate PA. Motivation to perform PA and prior PA also were impacted by the women's spouses and their behaviors. CONCLUSIONS:This study points to the importance of support and perception of support by spouses for women with MS. Support was highly valued regardless of the form that it took. Women with MS could benefit from understanding and encouraging the various supporting roles spouses play in the decisions women with MS make to be physically active.IMPLICATIONS FOR REHABILITATIONWomen with MS and their spouses consider physical activity to be beneficial.Women with MS value the support their spouses provide to encourage them to be physically active.Women with MS can perceive support from their spouses in varying ways, including support in initiating physical activity, supporting physical activity accomplishments or information sharing, assisting with physical activity, and encouraging separate physical activity.Physical activity programming for this population should consider ways to incorporate spousal support.
Apply It! • Health and fitness professionals will be able to use the information in this article to design exercise prescription programs for people with Down syndrome. • Health and fitness professionals will be able to approach a client with Down syndrome with more background knowledge of the condition itself.
Adherence and continued participation are areas of concern in wellness interventions and programming. For individuals with disabilities, this can be an even larger challenge because of barriers like transportation and decrease in overall health. However, the factors that could increase participation and adherence in this population group remains unclear. Adherence and continued participation were explored in a wellness class at the University of Georgia for people in the surrounding community with disabilities. This class is driven by students under the supervision of a graduate student and a faculty member. PURPOSE: To understand what factors impact participant adherence and participation in the unique environment of the wellness class. METHODS: Eight wellness class participants, with a wide range of physical and mild intellectual disabilities who had been in the class for 6-36 months, were chosen for in-depth qualitative interviews. Interview responses across participants were coded and analyzed for overarching themes. RESULTS: 71 codes were obtained from the interview data, with 7 categories from these codes. The primary theme identified was that adherence in the class was related to personal interaction with the student trainers. The personal interaction could be divided into subthemes of social accountability, motivation, supporting classroom environment, and student interaction. The overwhelming majority of these codes were positive, indicating satisfaction with the wellness class on the part of participants. Duration in the class did not influence the subthemes, other than longer durations were associated with a greater appreciation of the role of the participants educating the students. CONCLUSION: The primary factor that influences adherence and continued participation was related to personal interaction with the student trainers. These results suggest that encouraging positive social interactions related to social accountability and a positive environment can play a powerful role in maintaining exercise adherence in people with physical and intellectual disabilities.
To understand effects of the wellness program on family members/caregivers of participants; to further current knowledge base on caregiver burden.