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Purpose: To better understand preferences and attitudes that adult-aged survivors of childhood cancer have toward survivorship care plans (SCP) and related SCP-based counseling., Methods: Semi-structured qualitative interviews were conducted with 20 survivors participating in the Childhood Cancer Survivor Study who were at increased risk for cardiovascular disease secondary to their original cancer treatment. All participants were part of a larger randomized clinical trial (NCT03104543) testing the efficacy of an SCP-based counseling intervention with goal-setting designed to improve control of cardiovascular risk factors (i.e., hypertension, dyslipidemia, diabetes). A primarily deductive thematic analysis methodology guided interpretation; coded interview segments were grouped into primary themes of facilitators, barriers, suggestions, and positive sentiments., Results: Participants described benefits of the intervention including facilitation of accountability, goal-setting, and increased knowledge of their health. Many participants also noted improved knowledge of their cancer treatment and subsequent risks, and they were interested in sharing this information with their primary care provider. However, several participants were disappointed when they did not achieve their goals or felt that they had low motivation. Participants generally wanted increased flexibility in the intervention, whether in the duration, frequency, or method of delivery., Conclusions: The SCP-based intervention was generally well-received by those interviewed and appears promising for promoting goal-setting and accountability as part of an SCP-based intervention to improve control of cardiovascular risk factors., Implications for Cancer Survivors: Many survivors are at risk for cardiovascular disease or other potentially modifiable effects of their treatment. SCP-based interventions may facilitate improved control of these late effects., (© 2023. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Purpose: Young adult (YA) cancer survivors have high rates of adverse health and psychosocial outcomes. This risk-stratified, multicenter, randomized controlled trial (RCT) compared a self-management survivorship intervention to usual care in YA survivors with symptoms of cancer-related distress, insomnia, fatigue, pain, and/or depression., Methods: Eligibility included age 18-39 at diagnosis with an invasive malignancy in the previous 1-5 years. Baseline assessment determined "high need" participants, with 2-5 elevated targeted symptoms. We randomized high need participants to intervention or usual care and offered intervention participants a survivorship clinic visit, which included mutually decided action plans for symptoms. Follow-up calls at 1 and 3 months after the clinic visit reviewed action plan progress. Outcomes compared rates of improved symptoms for intervention vs usual care at 6 months and 12 months., Results: N = 344 completed baseline assessment, with n = 147 (43%) categorized as high need and randomized. Of n = 73 randomized to the intervention, n = 42 (58%) did not attend their survivorship clinic visit. In intent-to-treat analyses, aggregate symptom scores did not differ between arms, though distress improved for 46% in the intervention arm at 6 months compared to 18% in usual care (p = 0.03) among those with elevated distress at baseline., Conclusions: Distress improved for YAs who received self-management survivorship care. However, the study demonstrates a need for alternative strategies for providing YA survivorship care., Trial Registration: NCT02192333 IMPLICATIONS FOR CANCER SURVIVORS: While YA survivors demonstrate some improved distress when provided survivorship care, to make care accessible and effective, they require options such as remote delivery of care., (© 2021. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Background: Treatment with hematopoietic cell transplantation (HCT) has potentially severe effects on physical and psychosocial functioning. Poor social support has been linked with physical morbidity and mortality as well as psychological distress in HCT survivors. This study tested a theory-driven hypothesis that social support buffers adverse effects of health stressors of comorbidities and graft-versus-host disease (cGVHD) on distress and adherence to recommended healthcare among long-term HCT survivors., Methods: This cross-sectional study analyzed baseline data from a randomized controlled trial in adult survivors 3-18 years post-HCT. Data included medical records and patient-reported outcomes including cancer and treatment distress (CTXD), healthcare adherence (HCA), comorbidity index, cGVHD, ENRICHD Social Support Instrument (ESSI), Social Activity Log, and Health Self-Efficacy. We tested hypothesized models for HCA and CTXD using blocked hierarchical linear regressions., Results: Among the 781 HCT survivors completing baseline assessment, 38% had > 3 comorbidities, 8% had moderate-severe cGVHD, 30% reported low social support, 30% reported elevated distress, and 49% reported low healthcare adherence. Social support and self-efficacy were directly related to both adherence and distress. Regression models supported the hypothesized moderated relationships for distress but not for healthcare adherence., Conclusions: The two tested models confirm that the health stressors of comorbidities and cGVHD are moderated by better social support and self-efficacy in their associations with lower distress but without moderating effects for healthcare adherence., Implications for Cancer Survivors: Social support and self-efficacy confer protective benefits on healthcare adherence and psychological distress. Interventions are needed that focus on maintaining social networks or finding new networks if necessary., Clinical Trial Registration Number: NCT00799461., (© 2021. The Author(s), under exclusive licence to Springer Science+Business Media, LLC part of Springer Nature.)

Purpose: Determine the feasibility of a remotely delivered mobile health (mHealth)-supported intervention to improve diet and physical activity in hematologic malignancy survivors., Methods: Pilot randomized controlled trial of a 16-week intervention for improving diet and physical activity: individualized goal-setting (daily steps, sodium, saturated fat, added sugar intake) per feedback from mHealth trackers (Fitbit for activity; Healthwatch360 for diet), supplemented by a Facebook peer support group. Controls accessed the trackers without goal-setting or peer support. Everyone received standardized survivorship counseling with tailored advice from a clinician. Actigraphy and food frequency questionnaires assessed activity and diet at baseline and follow-up., Results: Forty-one participants (51.2% male; median age 45.1 years; 7.0 years from treatment) were randomized (24 intervention; 17 control). Fitbit and Healthwatch360 use were more common among intervention versus control participants (75.0% versus 70.6% and 50.0% versus 17.7% of eligible days, respectively). Most intervention participants (66.7%) engaged with Facebook; overall, 91.7% interacted with the study's mHealth applications. While no comparisons in activity or dietary outcomes between intervention versus control group met statistical significance, the intervention was associated with greater reductions in the targeted dietary factors and improvements in Healthy Eating Index-2015 score, moderate-vigorous physical activity time, and daily steps. Participant retention at 6 months was 90.2%., Conclusions: An intervention for cardiovascular risk reduction based on individualized goal-setting enhanced by mHealth and social media peer support was feasible and acceptable among cancer survivors., Implications for Cancer Survivors: Effective and easily disseminated strategies that improve diet and physical activity in this population are needed., Trial Registration: Registered in ClinicalTrials.gov (NCT03574012) on June 29, 2018., (© 2020. Springer Science+Business Media, LLC, part of Springer Nature.)

Purposes: Cancer-related distress is known to persist long after completion of treatment. Factors related to distress are largely unexplored in colorectal cancer (CRC) survivors. We examined changes over time and risk factors for distress in CRC patients over the first year after surgery., Methods: We included 212 CRC patients with data at 6 and 12 months post-surgery from the ColoCare Study in Heidelberg, Germany. Sociodemographic and lifestyle factors, social support, and health-related quality of life (HrQOL) prior to surgery were evaluated as predictors of cancer-related distress. Distress was measured with the Cancer and Treatment Distress instrument (CTXD). Linear regression analyses examined associations between risk factors and distress., Results: Distress subscale scores varied significantly over time: health burden subscale score increased (P < .001), while finances (P = .004), medical demands (P < .001), and identity (P < .001) subscale scores decreased over time. Uncertainty and family strain subscale scores did not change. Younger age, lower income, advanced tumor stage, poorer social support, and poorer baseline HrQOL predicted higher level distress at 6 and 12 months., Conclusion: Cancer-related distress continues unresolved after surgery. Although some risk factors are difficult to alter, those at highest risk can be identified earlier for possible preventive strategies., Implications for Cancer Survivors: Screening for risk factors pre-surgery would allow for targeted interventions including strategies to improve resources for those with low support, thereby reducing long-term distress in CRC survivors.

Purpose: This randomized controlled trial examines the efficacy of INSPIRE, an INternet-based Survivorship Program with Information and REsources, with or without problem-solving treatment (PST) telehealth calls, for survivors after hematopoietic cell transplantation (HCT)., Methods: All adult survivors who met eligibility criteria were approached for consent. Participants completed patient-reported outcomes at baseline and 6 months. Those with baseline impaired scores on one or more of the outcomes were randomized to INSPIRE, INSPIRE + PST, or control with delayed INSPIRE access. Outcomes included Cancer and Treatment Distress, Symptom Checklist-90-R Depression, and Fatigue Symptom Inventory. Planned analyses compared arms for mean change in aggregated impaired outcomes and for proportion of participants improved on each outcome., Results: Of 1306 eligible HCT recipients, 755 (58%) participated, and 344 (45%) had one or more impaired scores at baseline. We found no reduction in aggregated outcomes for either intervention (P > 0.3). In analyses of individual outcomes, participants randomized to INSPIRE + PST were more likely to improve in distress than controls (45 vs. 20%, RR 2.3, CI 1.0, 5.1); those randomized to INSPIRE alone were marginally more likely to improve in distress (40 vs. 20%, RR 2.0, CI 0.9, 4.5)., Conclusions: The INSPIRE online intervention demonstrated a marginal benefit for distress that improved with the addition of telehealth PST, particularly for those who viewed the website or were age 40 or older., Implications for Cancer Survivors: Online and telehealth programs such as INSPIRE offer opportunities to enhance HCT survivorship outcomes, particularly for mood, though methods would benefit from strategies to improve efficacy.

Purpose: Insomnia is commonly experienced by cancer survivors. Chronic insomnia is associated with significant physical and psychosocial consequences if not properly treated. Both the National Cancer Institute (NCI) and the National Comprehensive Cancer Network (NCCN) recommend the evaluation of sleep disturbances and evidence-based treatment of insomnia during routine survivorship care. To better understand current clinical practices, we conducted a survey of major cancer centers across the United States (US)., Methods: Adult survivorship programs at the 25 US cancer centers that are both NCI-designated comprehensive cancer centers and NCCN member institutions were surveyed about the evaluation and treatment of insomnia in their hospital., Results: All institutions responded to the survey. Thirteen centers (56 %) reported screening <25 % of survivors for sleep disorders, and few clinicians providing survivorship care were well-prepared to conduct a proper sleep evaluation. Insomnia was most commonly treated with sleep hygiene, or pharmacotherapy, rather than cognitive-behavioral therapy. No program reported that >50 % of their survivors were receiving optimal insomnia-related care. A variety of methods to improve insomnia care were endorsed by respondents., Conclusions: There is a clear need to improve the evaluation and treatment of insomnia for cancer survivors at institutions across the country. Cancer centers deemed a number of modalities relevant for improving provider confidence in addressing sleep challenges., Implications for Cancer Survivors: To improve the quality of insomnia care for survivors, systematic interventions to increase standardized screening for sleep disorders, providing additional sleep medicine training for survivorship clinicians, and optimizing the role of sleep medicine specialists in the oncology setting should be considered.

Purpose: Clinical trials have demonstrated the benefits of exercise for cancer survivors. This investigation determined the effectiveness and safety of a disseminated community-based exercise program for cancer survivors who had completed treatment., Methods: Personal trainers from regional YMCAs received training in cancer rehabilitation and supervised twice-a-week, 12-week group exercise sessions for survivors. At baseline and post-program, validated measures assessed patient-reported outcomes (PRO) and physiologic measurements., Results: Data were collected from 221 survivors from 13 YMCA sites and 36 separate classes. All participants had data available at one time point, while matched baseline and post-program PRO and physiologic data were available for 85% (N = 187). Participants with matched data were largely female (82%), with mean age of 58 (range, 28-91 years). Time since diagnosis ranged from 1 to 48 (mean, 5.6 years), and mean time since last treatment was 3.0 (range, 1-33 years). Physiological improvements were significant in systolic (P < 0.001) and diastolic (P = 0.035) blood pressure, upper and lower body strength, the 6-min walk test (P = 0.004), and flexibility (P < 0.001). Participants reported improvements in overall health-related quality of life (P < 0.001), social support (P = 0.019), body pain (P = 0.016), fatigue (P < 0.001), insomnia (P < 0.001), and overall musculoskeletal symptoms (P = <0.001). Few injuries or lymphedema events occurred during classes., Conclusions: Community-based exercise groups for cancer survivors of mixed diagnoses and ages, who have completed active treatment, have physiologic and psychosocial benefits, and are safe., Implications for Cancer Survivors: Survivors may expect significant benefit from participating in a community-based exercise program tailored to meet their individual needs as a survivor.

Introduction: This study evaluates the concordance of treatment summaries (TSs) and survivorship care plans (SCPs) delivered to breast cancer survivors within the LIVESTRONG™ Network of Survivorship Centers of Excellence with Institute of Medicine (IOM) recommendations and describes additional structure/process variables., Method: Seven NCI-designated comprehensive cancer centers and six community-based centers participated. TS/SCPs for 65 patients were rated against IOM recommendations using a study-derived checklist, and surveys were administered to better understand the structure and process of delivering TSs/SCPs., Results: On average, fewer than half of IOM content recommendations were met for TSs (M = 46%) and less than two thirds for SCPs (M = 59%). No sites achieved ≥75% overall concordance with IOM recommendations for TSs and only two of 13 met this criterion for SCPs. Content domain scores across sites varied widely, as did the number of sites addressing domain content with ≥75% concordance. Nonetheless, resources required for document preparation and delivery were substantial., Discussion: Gaps in concordance with IOM recommendations exist even in dedicated survivorship centers. A substantial time burden was also noted. Further research is needed to determine which informational elements are essential, to develop and test strategies for improving efficiency and reach, and to determine if outcomes of survivorship care planning warrant the resources required in their preparation and delivery. IMPLICATIONS FOR SURVIVORS: TSs and SCPs have been recommended for all cancer survivors. Essential elements must be determined, approaches made more efficient, outcome improvements demonstrated, and cost-benefit analyses determined before survivors should expect widespread implementation of this recommendation for survivorship care.

Introduction: This study examined the association between sociodemographic, cancer treatment, and care delivery factors on young adult cancer survivors' confidence in managing their survivorship care., Methods: Survivors aged 18-39 years (n = 376) recruited from the LIVESTRONG™ Survivorship Center of Excellence Network sites completed a survey assessing self-reported receipt of survivorship care planning, expectations of their providers, and confidence in managing their survivorship care. Multivariate logistic regression identified characteristics of those reporting low confidence in managing their survivorship care., Results: Mean age was 28 years; mean interval from diagnosis was 9 ± 8 years. Seventy-one percent reported currently attending an oncology survivorship clinic. Regarding survivorship care planning, 33% did not have copies of their cancer-related medical records, 48% did not have a treatment summary, and 55% had not received a survivorship care plan. Seventy percent identified the oncologist as the most important health care provider for decisions regarding test and treatment decisions while 10% reported using a "shared-care model" involving both primary care providers and oncologists. Forty-one percent were classified as having low confidence in managing survivorship care. In multivariate analysis, low confidence was associated with non-white ethnicity and lack of a survivorship care plan (both p < 0.05)., Discussion/conclusions: Findings suggest that provision of survivorship care plans for young adult cancer survivors can be used to improve confidence in managing survivorship care, particularly for ethnic minorities., Implications for Cancer Survivors: Survivors should consider advocating for receipt of a survivorship care plan as it may facilitate confidence as a consumer of survivorship care.

Introduction: The Internet provides a widely accessible modality for meeting survivorship care needs of cancer survivors. In this paper, we describe the development and implementation of an Internet site designed as a base from which to conduct a randomized controlled trial to meet psycho-educational needs of hematopoietic stem cell transplantation (HSCT) survivors., Methods: A cross-disciplinary team designed, wrote content, and programmed an Internet site for online study registration, consent, assessment, and study implementation. All survivors who were 3-18 years after HSCT for hematologic malignancy and treated at one transplant center were approached by mail for participation. All study activities could be conducted without study staff contact. However, participants had options for phone or email contact with study staff as desired., Results: Of 1,775 participants approached for the study, 775 (58% of those eligible) consented and completed baseline assessment. Mean age was 51.7 (SD, 12.5; age range, 18-79 years), with 56% male. Fifty-seven percent required staff contact one or more times; a majority were for minor technical issues or delays in completion of enrollment or baseline assessment., Discussions/conclusions: This study demonstrated the potential for providing Internet-based survivorship care to long-term survivors of HSCT. Although building a survivorship Internet site requires a team with diverse expertise, once built, these resources can be implemented rapidly with large numbers of survivors., Implications for Cancer Survivors: While Internet-based services will not meet all the needs of cancer survivors, this methodology represents an important modality for augmenting onsite clinical services as a method for meeting psycho-educational, information, and resource needs of cancer survivors.

Introduction: Beyond documentation of high prevalence rates, research has not examined the qualities and characteristics of musculoskeletal symptoms in cancer survivors, possibly because measures have not been validated specifically for the assessment of these symptoms in survivors. We report here on a new measure of muscle and joint symptoms for survivors of hematologic malignancies and hematopoietic cell transplantation (HCT)., Methods: In a cross-sectional design, 130 adults, 5-20 years after HCT, completed patient-reported outcomes. Assessment included musculoskeletal symptoms on the Muscle and Joint Measure (MJM), as well as health-related quality of life and treatments., Results: Principal components analysis using promax rotation revealed four subscales for the MJM with item factor loadings above 0.50: muscle aches or stiffness (myalgias), joint pain, stiffness or swelling (arthralgias), muscle cramps, and muscle weakness. Variance explained by the total score was 77%. Internal consistency reliabilities of the subscales and total score ranged from 0.86 to 0.93. Validity was confirmed by correlations with the Short Form-36 bodily pain, physical function and vitality subscales, the Fatigue Symptom Inventory, and the Symptom Checklist-90-R depression (all P < .001)., Conclusions: Musculoskeletal symptoms in survivors who received HCT can be measured reliably and validly with the MJM. The measure requires testing to establish its psychometric properties with other diagnostic and treatment groups., Implications for Cancer Survivors: The MJM has potential research and clinical value for addressing the musculoskeletal symptoms of survivors. The measure may assist with examining the mechanisms as well as treatments for these symptoms, which are among the most prevalent in long-term cancer survivors.

Introduction: Work return is an indicator of recovery and functional status for cancer survivors. We investigated whether demographic, medical and functional factors predicted full-time work return following hematopoietic cell transplantation (HCT)., Methods: Adults (N = 197), most with hematologic malignancy, completed assessments before their HCT and at intervals over 5 years. Assessments included treatment and demographic factors, and date of return to full-time work. We created binary variables, indicative of major impairment, from the Short Form 36 Health Survey (SF-36) mental (MCS) and physical (PCS) function component scores, dichotomized at 1 SD below population norms ( 40). PCS and MCS were imputed for 16% of the sample. Predictors of work return were analyzed using Cox proportional hazards regression., Results: Of the 130 patients working full-time at pre-HCT, 88 (68%) were alive and relapse-free at 5 years. Of these, 53 (60%) had returned to full-time and 28 (32%) to part-time work. For the primary analyses at 6 month post-HCT, 14 patients had already died or relapsed and 10 had returned to work. Among the remaining 106 patients, those with PCS >40 returned to work faster (Hazard Ratio (HR) 2.38, 95% Confidence Interval (CI) 1.26-4.49). Female survivors were less likely to return to work than males (HR 0.54, 95% CI 0.29-0.99)., Conclusion: Return to work is a lengthy process for many survivors. Predictors of slower return include physical dysfunction and female gender. Implications for cancer survivors Realistic preparation for time off work is essential to long-term health and finances of cancer survivors.

Introduction: The LIVESTRONG Survivorship Center of Excellence Network consists of eight National Cancer Institute-designated Comprehensive Cancer Centers funded by the LAF between 2004 and 2008. The Network was created to accelerate the pace of progress in addressing the needs of the growing survivor community., Methods: This paper will briefly describe some of the salient issues surrounding the care of cancer survivors, and examine models of survivorship care that are being developed in individual Centers of Excellence (COE) as well as in the overall Network., Results and Conclusions: As the recommendations and policies for optimal survivorship care have to be feasible and relevant in the community setting, each COE is partnered with up to three community affiliates. Through these partnerships, the community affiliates develop survivorship initiatives at their institutions with support and guidance from their primary COE.