Experiences of adult survivors of childhood cancer in a randomized cardiovascular health promotion trial: a qualitative report from the Childhood Cancer Survivor Study.

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.

Health-Related Quality of Life Outcomes in Older Hematopoietic Cell Transplantation Survivors.

The use of hematopoietic cell transplantation (HCT) has been increasing in older patients. However, the levels if distress, psychosocial functioning, and health-related quality of life (HRQOL) among older HCT survivors remains largely unknown. In this secondary analysis using data from 2 randomized controlled trials, we analyzed baseline Cancer and Treatment Distress (CTXD) and Confidence In Survivorship Information (CSI) surveys of HCT survivors who were age ≥60 years at the time of transplantation and alive and disease-free ≥1 year post-autologous or -allogeneic HCT. We analyzed associations of these parameters with the Physical Component Summary (PCS) and Mental Component Summary (MCS) scores of the 12-Item Short Form Survey (SF-12) and a healthcare adherence (HCA) scale, after adjusting for transplantation and patient demographic factors. A total of 567 patients were included. The median patient age at HCT was 65 years, and 68% of the patients underwent autologous HCT. The median CTXD score was .7 (mild), and the greatest distress was reported in the "health burden" subscale. The median CSI score was 1.4 (moderate-high), with the lowest confidence reported in the "late effects" subscale. We found negative Spearman correlations between CTXD score and SF-12 PCS (P = -.59) and MCS (P = -.54) and positive Spearman correlations between CSI score and SF-12 PCS (P = .23) and MCS (P = .30). The median HCA scale score was high at .8. Male sex, autologous HCT, increased distress level, and worse CSI score were associated with lower use of preventive care. Older survivors experienced a low level of distress and moderate-high level of CSI at ≥1 year post-HCT. As lower distress and higher CSI were associated with improved HRQOL and optimized preventive HCA, CTXD/CSI measures can be used to individualize the care of older adult HCT survivors.

Social Support, Coping, and Cancer-Related Health Burden in Long-term Survivors Treated with Hematopoietic Stem Cell Transplantation as Adolescents or Young Adults.

Purpose: Long-term adolescent and young adult hematopoietic stem cell transplantation (HCT) survivors face complex physical and psychological treatment effects that contribute to cancer-related health burden. We aimed to identify the role of social support and coping strategies on cancer-related health burden. Methods: This cross-sectional analysis included HCT recipients from the INSPIRE trial [NCT00799461], who received their first transplant between ages 15 and 39. As our primary outcome, we used the health burden subscale of the Cancer and Treatment Distress measure. We assessed correlates using the Short Form-36v2 physical component summary, brief Coping Orientation to Problems Experienced (COPE), and ENRICHD Social Support Inventory. We used hierarchical multivariable linear regression to identify factors associated with cancer-related health burden, with the first step including sociodemographic and clinical factors, the second step adding physical function, and the third step including social support and coping. Results: Participants (N = 293) were 52% male and 93% white, non-Hispanic, with a mean age of 30.2 (standard deviation 6.6) at first transplant. In step one, sex accounted for ∼3% of the variance (p = 0.006). Adding physical function explained an additional 33% of the variance (p = <0.001). Social support and coping strategies explained 11% of the variance (p = <0.001). The final model explained 47% of the variance; better physical function, more social support, and active coping were associated with lower cancer-related health burden, while female sex, venting, and distraction were associated with higher cancer-related health burden. Conclusion: Supporting physical function and fostering social support and active coping may help mitigate cancer-related health burden in this population. Clinical Trial Registration: NCT00799461.

Health-Related Quality of Life in Young Adult Survivors of Hematopoietic Cell Transplantation.

Young adults (YA), age 18 to 39 years, are at a stage of life that may make them more vulnerable than older adults to impairments in health-related quality of life (HRQOL) during and after hematopoietic cell transplantation (HCT). Health self-efficacy (HSE), the belief that one can implement strategies to produce a desired health outcome, has been associated with health outcomes in oncology research. Little is known about HRQOL or HSE in YA HCT survivors compared with older HCT survivors. Given the age-specific psychosocial challenges facing YA HCT recipients and research on non-transplant YA cancer survivors, we hypothesized that YA survivors would have worse post-HCT HRQOL compared with older adults, and that among YA HCT survivors, higher levels of HSE would be associated with higher levels of HRQOL and lower levels of cancer-related distress. This was a cross-sectional secondary analysis of 2 combined baseline datasets from multicenter studies of HCT survivors approached for participation in clinical trials of survivorship interventions. Participants from 20 transplantation centers in the United States were at 1 to 10 years post-HCT and age ≥18 years at the time of study enrollment, had no evidence of disease relapse/progression or subsequent malignancies, and could read English adequately to consent for and complete assessments. Medical record and patient-reported data were obtained for demographics and HCT-related clinical factors and complications (eg, total body irradiation, chronic graft-versus-host disease [cGVHD]). Participants completed surveys on HRQOL, including the Short-Form [SF]-12, HSE, and Cancer and Treatment Distress (CTXD), which includes 6 subscales and reports an overall mean score. On the SF-12, both the Mental Component Score (MCS) and Physical Component Score (PCS) were calculated. Two cohorts were compared: YAs (age 18 to 39 years at transplantation) and older adults (age ≥40 years at transplantation). Multiple linear regression analyses identified factors associated with HSE, PCS, MCS, and CTXD in YAs. In this analysis of 979 survivors, compared with the older adults, the YA participants had lower median mental health scores (SF-12 MCS: 48.40 versus 50.23; P = .04) and higher cancer-related distress (CTXD: .96 versus .85; P = .04), but better physical health (SF-12 PCS: 48.99 versus 47.18; P = .049). Greater overall cancer-related distress was driven by higher levels of uncertainty, financial concern, and medical demand subscales for YAs compared with older adults. Young adults also had lower HSE (2.93 versus 3.08; P = .0004). In a multivariate model, HSE was strongly associated with age group (P = .0005) after adjusting for multiple other transplantation-related factors. Among YAs, HSE was associated with the SF-12 MCS and PCS and the CTXD, and HSE remained significant after adjusting for other transplantation-related factors. Overall, the YA HCT survivors had lower mental health, increased cancer-related distress, and lower levels of HSE compared with the older adults. Although the direction of these effects cannot be determined with these data, the strong association between HSE and HRQOL among YAs suggests that targeting interventions to improve HSE may have broad impact on health outcomes.

Self-Efficacy for Symptom Management in Long-Term Adult Hematopoietic Stem Cell Survivors.

Hematopoietic cell transplantation (HCT) survivors have a complex and multiphase recovery period. Health care delivery and psychosocial interventions for HCT survivors are challenging because many HCT recipients live great distances from the facility where they had their HCT. Therefore identifying factors associated with a patient's capability to self-manage symptoms is a significant focus of survivorship research. A patient's self-efficacy may be important for the successful management of major stressors associated with treatments and recovery. Here, we aimed to evaluate the impact of perceived self-efficacy on distress, quality of life (QoL), depression, and fatigue and identify the factors associated with lower self-efficacy. This cross-sectional study analyzed baseline data from a randomized controlled trial INSPIRE (NCT01602211) in adult (age 18 and older) survivors 2 to 10 years after HCT. Patients with recurrence or subsequent malignancy requiring cancer treatment during the 2 years before enrollment, inability to read and understand English, and lack of access to email and the Internet were excluded. Data included medical records and patient-reported outcomes including Cancer and Treatment Distress (CTXD) with 6 subscales, Patient Health Questionnaire depression scale (PHQ-8), Short Form 12 Health Survey (SF-12) physical function and mental function scores, Brief Fatigue Inventory (BFI) and Self-Efficacy. Pearson correlations were used to test bivariate associations for self-efficacy of CTXD, SF-12, BFI, and PHQ-8. General linear models were used to test the independent associations for CTXD and SF-12 outcomes with self-efficacy, controlling for selected sociodemographic and treatment covariates. Tenability of statistical model assumptions were examined, and no remediation was necessary. A total of 1078 HCT survivors were included in the analysis. Participants were 19 to 85 years (mean age 58), 53% male, and over 90% White and non-Hispanic. Only 16% reported living in a rural area. A majority received an autologous HCT (55%) and were less than 5 years from their first HCT (54%). Among the allogeneic HCT recipients, more than half (55%) had active chronic Graft-versus-Host (cGVHD) and nearly 40% were on active systemic treatment. The mean self-efficacy score was 3.01 (SD = 0.49). Female sex (P = .014), younger age at HCT, younger age at cGVHD presentation (P = .031), moderate to severe currently active cGVHD (P = .003) and household income less than $40,000 (P< .001) were associated with lower self-efficacy. In bivariate analyses, self-efficacy was negatively correlated with mean total distress (CTXD, r = -.5, P< .001) and each of the CTXD subscales. HCT survivors with higher self-efficacy also reported better physical (r 0.48, P< .001) and mental function on the SF-12 (r = 0.57, P< .001). Moreover, self-efficacy was negatively correlated with symptoms such as fatigue (r = -.44, P< .001) and depression (r = -.48, P< .001). In a regression model investigating the impact of self-efficacy on CTXD controlled for demographics and disease characteristics, lower self-efficacy was independently associated with higher distress (CTXD, ß = -.232; 95% CI [-.294, -.169], P< .001). Moreover, there was a significant positive relationship between self-efficacy and both mental (ß = 4.68; 95% CI [3.82, 5.54]; P< .001) and physical (ß = 2.69; 95% CI [1.74, 3.64]; P< .001) components of QoL. Our study demonstrates that lower levels of self-efficacy reported by HCT survivors were independently associated with higher levels of symptoms such as fatigue and depression, lower QoL, and more cancer-related distress. Furthermore, self-efficacy was more likely to be impaired in females, younger adults, those with lower incomes, and survivors with active cGVHD. These findings support the value of self-management interventions focused on improving self-efficacy as having the potential to improve multiple symptoms and QoL in HCT survivors.

Cancer disparities in the context of rurality: risk factors and screening across various U.S. rural classification codes.

PURPOSE: Prior cancer research is limited by inconsistencies in defining rurality. The purpose of this study was to describe the prevalence of cancer risk factors and cancer screening behaviors across various county-based rural classification codes, including measures reflecting a continuum, to inform our understanding of cancer disparities according to the extent of rurality. METHODS: Using an ecological cross-sectional design, we examined differences in cancer risk factors and cancer screening behaviors from the Behavioral Risk Factor Surveillance System and National Health Interview Survey (2008-2013) across rural counties and between rural and urban counties using four rural-urban classification codes for counties and county-equivalents in 2013: U.S. Office of Management and Budget, National Center for Health Statistics, USDA Economic Research Service's rural-urban continuum codes, and Urban Influence Codes. RESULTS: Although a rural-to-urban gradient was not consistently evident across all classification codes, the prevalence of smoking, obesity, physical inactivity, and binge alcohol use increased (all ptrend < 0.03), while colorectal, cervical and breast cancer screening decreased (all ptrend < 0.001) with increasing rurality. Differences in the prevalence of risk factors and screening behaviors across rural areas were greater than differences between rural and urban counties for obesity (2.4% vs. 1.5%), physical activity (2.9% vs. 2.5%), binge alcohol use (3.4% vs. 0.4%), cervical cancer screening (6.8% vs. 4.0%), and colorectal cancer screening (4.4% vs. 3.8%). CONCLUSIONS: Rural cancer disparities persist across multiple rural-urban classification codes, with marked variation in cancer risk factors and screening evident within rural regions. Focusing only on a rural-urban dichotomy may not sufficiently capture subpopulations of rural residents at greater risk for cancer and cancer-related mortality.

Prevalence of and Factors Associated with Marital Distress among Hematopoietic Cell Transplantation Survivors: Results from a Large Cross-Sectional Study.

The medical and psychological sequelae of hematopoietic cell transplantation (HCT) are well established, but less is known about the impact on intimate relationships. We sought to describe the prevalence of relationship distress among married HCT survivors and to identify factors associated with relationship distress. The study was cross-sectional. HCT survivors treated at a National Cancer Institute-designated cancer center completed a survey that included measures of psychological and relationship distress (Revised Dyadic Adjustment Scale [RDAS]), demographic, and medical factors. A total of 1047 respondents reported being married and completed the RDAS. Sample characteristics were a mean age of 58 years (range, 22 to 83 years), a mean interval post-HCT of 12.3 years (range, <1 to 43 years), 42% female, and 89% non-Hispanic white. RDAS total adjustment scores were comparable to published community sample values. Nineteen percent of the respondents were classified as relationship-distressed. Three factors were associated with greater odds of relationship distress: cancer and treatment distress (odds ratio [OR], 1.59; 95% confidence interval [CI], 1.09 to 2.31); depression (OR, 1.44; 95% CI, 1.17 to 1.76), and time post-transplantation (OR, 1.03; 95% CI, 1.01 to 1.04). These findings were qualified by sex-stratified analyses. Depression was associated with relationship distress among females; the other 2 variables were associated with relationship distress among males. Our results paint an overall picture of positive long-term marital functioning among HCT survivors, with a subset reporting relationship distress. Screening is warranted to identify survivors at risk for relationship distress and to inform targeted intervention.

Cancer survivorship care for young adults: a risk-stratified, multicenter randomized controlled trial to improve symptoms.

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.

Social support as a moderator of healthcare adherence and distress in long-term hematopoietic cell transplantation survivors.

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.

Sexual Functioning in Long-Term Survivors of Hematopoietic Cell Transplantation.

This investigation characterized sexual activity and sexual function in hematopoietic cell transplantation (HCT) survivors, compared them with norms, and examined factors associated with sexual dysfunction, with the goal of identifying targets for intervention to improve sexual health. Surviving adults from a large transplantation center were asked to complete an annual survey with a core of health questions and a module on sexual activity and function. Participants completed the Sexual Function Questionnaire, Cancer and Treatment Distress form, and Revised Dyadic Adjustment Scale. Clinical data were collected from the transplantation medical database. Multivariate logistic regressions identified factors associated with sexual activity and function. Participating survivors (n = 1742) were a mean of 11.9 years (range, .4 to 43.1 years) after HCT, mean age 57.6 years, and 53% male. Women were more likely than men to report being sexually inactive in the past year (39% versus 27%) and, among those sexually active, to report low sexual function (64% versus 32%). Male and female survivors reported lower rates of sexual activity and function than comparison norms (all P < .01). In regressions, factors associated with being sexually inactive included older age, having <4 years of college education, low performance status, and not being in a committed relationship. Additional factors for men included receipt of nonmyeloablative conditioning and not being employed or in school. Low sexual functioning for men and women was associated with low performance status, and, for women, a committed relationship of lower quality, while for men the association was with older age. Sexual dysfunction is common in both men and women after HCT, regardless of time since treatment. Survivors need routine evaluation and access to multimodal interventions.

Driving Distance and Patient-Reported Outcomes in Hematopoietic Cell Transplantation Survivors.

Long driving distances to transplantation centers may impede access to care for hematopoietic cell transplantation (HCT) survivors. As a secondary analysis from the multicenter INSPIRE study (NCT01602211), we examined baseline data from relapse-free HCT adult survivors (2 to 10 years after allogeneic or autologous HCT) to investigate the association between driving distances and patient-reported outcome (PRO) measures of distress and physical function. We analyzed predictors of elevated distress and impaired physical function using logistic regression models that operationalized driving distance first as a continuous variable and separately as a dichotomous variable (<100 versus 100+ miles). Of 1136 patients available for analysis from 6 US centers, median driving distance was 82 miles and 44% resided 100+ miles away from their HCT centers. Elevated distress was reported by 32% of patients, impaired physical function by 19%, and both by 12%. Driving distance, whether operationalized as a continuous or dichotomous variable, had no impact on distress or physical function in linear regression modeling (95% confidence interval, 1.00 to 1.00, for both PROs with driving distance as a continuous variable). In contrast, chronic graft-versus-host-disease, lower income, and lack of Internet access independently predicted both elevated distress and impaired physical function. In summary, we found no impact of driving distance on distress and physical function among HCT survivors. Our results have implications for how long-term follow-up care is delivered after HCT, with regard to the negligible impact of driving distances on PROs and also the risk of a "digital divide" worsening outcomes among HCT survivors without Internet access.

Factors associated with social functioning among long-term cancer survivors treated with hematopoietic stem cell transplantation as adolescents or young adults.

OBJECTIVE: Hematopoietic stem cell transplantation (HSCT) can compromise long-term health and social functioning. We examined the impact of physical and social-emotional factors on the social functioning of long-term adolescent and young adult (AYA) HSCT survivors. METHODS: This cross-sectional analysis included HSCT recipients from the INSPIRE trial [NCT00799461] who received their first transplant between ages 15-39. Patient-reported outcome measures included the Short Form-36v2, Fatigue Symptom Inventory, Cancer and Treatment Distress, and the ENRICHD Social Support Inventory. We used hierarchical multiple linear regression to identify physical and social-emotional factors associated with social functioning at the baseline assessment, with the first block including sociodemographic and clinical factors significant at P = <0.10 in univariate testing, the second block including fatigue and physical function, and the third block including social support and distress. RESULTS: Participants (N = 279) were 52% male and 93.5% white, non-Hispanic, with a mean age of 30.3 (SD 6.6) at first transplant. Social Functioning mean was 48.5 (SD 10.5), below age-adjusted norms (t = -13.6, P = <0.001). In the first block, current chronic graft-vs-host disease accounted for 5.5% of the variance (P = <0.001). Adding fatigue and physical function explained an additional 46.6% of the variance (P = <0.001). Adding distress and social support explained an additional 7.7% of the variance (P = <0.001). The final model explained 59.8% of the variance; distress, fatigue, and physical function were significantly associated with social functioning. CONCLUSIONS: Distress, fatigue, and physical function are associated with social functioning and interventions targeting these symptoms may help to improve SF among long-term cancer survivors treated with HSCT as AYAs.

Who Enrolls in an Online Cancer Survivorship Program? Reach of the INSPIRE Randomized Controlled Trial for Hematopoietic Cell Transplantation Survivors.

The internet can be a valuable tool in delivering survivorship care to hematopoietic cell transplantation (HCT) cancer survivors. We describe the reach of INSPIRE, an Internet and social media-based randomized controlled trial, to address healthcare and psychosocial needs of HCT survivors. All survivors 2-10 years after HCT for hematologic malignancy or myelodysplasia from 6 transplantation centers in the US were approached by mail and follow-up calls. Eligible participants had access to the Internet, an email address, and did not have active disease in the past 2 years. We used logistic regression to determine characteristics of eligible survivors who were more or less likely to enroll. Of 2578 eligible HCT survivors, 1065 (41%) enrolled in the study. The mean age of enrollees was 56.3 ± 12.6 years (range, 19 to 89 years), 52% were male, and 94% were white. Survivors less likely to enroll included those who were male, age <40 years, and who received an autologous transplant (all P < .001). Compared with white survivors, African Americans were less likely to enroll (P < .001), whereas Native Americans/Alaska Natives were more likely to join the study (P = .03). The reach of the INSPIRE program was broad, including to survivors who traditionally have less access to resources, such as Native Americans/Alaskan Natives and rural residents. Strategies are still needed to improve the enrollment of online studies of survivorship resources for males, young adults, African American, and autologous HCT survivors because their use may improve outcomes.

Age and gender differences in financial distress among hematopoietic cell transplant survivors.

PURPOSE: Cancer has long-term financial consequences. Adolescent and young adult (AYA) and middle-aged cancer survivors may experience more financial toxicity than older adults. This study examined age differences in financial distress in hematopoietic cell transplant survivors and whether these differences result from measurement bias, more financial barriers to care, or an overall higher level of distress. METHODS: Hematologic malignancy survivors (n = 1135, 2-10 years post-transplant) completed the Cancer and Treatment Distress Scale (CTXD) and demographics as part of the baseline assessment for a randomized clinical trial. The CTXD has seven subscales, but for this study, we examined the financial distress subscale and the overall score. Item response theory analyses tested for bias by age and gender. Multivariate linear regression tested the association of age and gender with the CTXD scores while controlling for financial barriers to care. RESULTS: No bias was found on the CTXD. AYA (p < 0.01) and middle-aged adults (p < 0.001) reported more financial and overall distress than older (age 65+) adults. The same association of age and financial distress was observed in women (p < 0.01). However, only middle-aged men (p < 0.01) reported more financial and overall distress than older men; AYA men did not (p > 0.18). Financial barriers to care were not associated with financial or overall distress. CONCLUSIONS: Part of the increase in financial distress with younger age may be due to a higher risk of general distress. Policy initiatives to control cancer costs should consider life stage and the unique financial challenges at different ages for men and women.

Psychological Impacts and Ways of Coping Reported by Spousal Caregivers of Hematopoietic Cell Transplant Recipients: A Qualitative Analysis.

Allogeneic hematopoietic cell transplantation (HCT) is a demanding treatment with well-established medical and psychosocial sequelae. Impacts on significant others are tremendous. Using an unfiltered qualitative approach, we asked spouses (n = 15) of HCT recipients to talk about their thoughts and feelings regarding the transplantation and their role as caregiver. Recordings were transcribed and independently coded to identify recurrent patterns. Caregivers mentioned both negative and positive psychological impacts of HCT, but the number of negative impacts was greater: 164 versus 34 instances. The most frequently mentioned negative psychological impacts were anxiety/worry (30 instances), fear (20 instances), feeling overloaded/overwhelmed (19 instances), and uncertainty (17 instances). Other emergent categories were roles/responsibilities (49 instances) such as parenting, work, and treatment-related tasks, and coping strategies (55 instances). The latter included both adaptive and maladaptive strategies (75% and 25%, respectively). Despite the preponderance of negatively toned thoughts and feelings, signs of adjustment emerged, with mentions of positive psychological states, such as optimism and gratitude, and adaptive coping strategies, such as active coping, use of emotional support, and self-care. Interventions intended to facilitate adaptation to the HCT experience should involve strategies to help caregivers manage symptoms of distress and promote adaptive coping.

Survivorship after Autologous Hematopoietic Cell Transplantation for Lymphoma and Multiple Myeloma: Late Effects and Quality of Life.

Although autologous hematopoietic cell transplantation (AHCT) is standard therapy for patients with lymphoma and multiple myeloma (MM), few studies have addressed late effects and quality of life (QoL) in long-term survivors after AHCT. Using long-term follow-up (LTFU) annual questionnaires with self-reported outcomes, we surveyed 665 patients who were at ≥5 years after AHCT for the diagnosis of lymphoma or MM. Three-hundred and eighty-nine patients completed the questionnaire (58% response rate) at a median of 11 years (range, 5-30 years) after AHCT. The median patient age was 63 years (range, 22-88 years) in the 268 patients with lymphoma and 69 years (range, 34-84 years) in the 121 patients with multiple myeloma. The most commonly reported medical conditions (>10% incidence) were sexual dysfunction, history of shingles, cataracts, osteoporosis or osteopenia, joint replacement, and skin cancer. Current medication use was more frequent in the patients with MM for infection prevention/treatment (19% for MM versus 5% lymphoma; P < .001), hypertension (41% versus 26%; P = .004), osteoporosis (23% versus 10%; P < .001), and pain (32% versus 11%, P < .001). Treated hypothyroidism was more common in lymphoma patients. In multivariate analysis combining lymphoma and MM, worse physical functioning was associated with older age, shorter interval since AHCT, comorbidities, relapse, and treatment for depression and/or pain. Worse mental functioning was associated with younger age and treatment for anxiety, depression, or pain. In conclusion, AHCT survivors report generally good QoL but many late effects and symptoms that are potentially amenable to intervention.

An online randomized controlled trial, with or without problem-solving treatment, for long-term cancer survivors after hematopoietic cell transplantation.

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.

Engagement with INSPIRE, an Online Program for Hematopoietic Cell Transplantation Survivors.

In a secondary analysis of a randomized controlled trial (RCT), we examined participants' engagement with INSPIRE, a personalized online program for hematopoietic cell transplantation (HCT) survivors that focuses on cancer-related distress, depression, fatigue, and health care needs. We approached all adult, 3- to 18-year HCT survivors treated for hematologic malignancy without relapse or second cancer in the previous 2 years for participation in an RCT with either immediate or delayed access to INSPIRE. Participants with immediate access could view the online material at any time. Data included page view tracking, medical records, and patient-reported outcomes, including the Short Form 36 and Cancer and Treatment Distress (CTXD) measures. Of 1322 eligible HCT survivors, 771 (58%) completed the baseline assessment, and 451 received immediate INSPIRE access and were included in analyses. The cohort was 56% male, with a mean age of 52 ± 12.2 years, and 26% received an autologous transplant. Most (77%) logged into the INSPIRE site at least once, and 48% viewed ≥8 pages. Survivors who viewed ≥2 pages were more likely to be age ≥40 years (relative risk [RR], 1.41; 95% confidence interval [CI], 1.10 to 1.80), to be female (RR, 1.22; 95% CI, 1.07 to 1.40), to have chronic graft-versus-host disease (RR, 1.28; 95% CI, 1.08 to 1.51), to be less than 10 years post-HCT (RR, 1.19; 95% CI, 1.01 to 1.39), and to have moderate CTXD distress (RR, 1.34; 95% CI, 1.14 to 1.57). Engagement did not differ by race, education, income, rural/urban residence, computer experience, donor type, or depression (all P ≥ .50). The INSPIRE online program was widely used, including by those who often have reduced access to care after treatment.

Anxiety and Depression in Cancer Survivors.

Most cancer survivors adjust well to life after cancer but some experience persisting negative mood, such as cancer-related fears, posttraumatic stress, anxiety, or depression. Mood fluctuations may not reach criteria for a clinical diagnosis but subclinical symptoms can interfere with quality of life. Women, adolescents, and young adults are particularly at risk for mood disturbances. Behavioral interventions, such as cognitive behavioral therapy and pharmacologic treatments, can effectively treat these distressing emotions. Much of the research on managing emotional needs after cancer has been completed with breast cancer survivors and more work is needed with diverse groups of survivors.