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

J Cancer Surviv

2021 Karen Syrjala; Marie-Laure Crouch; Jean Yi; Mary Flowers

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 3-18years 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.

Free of malignancy but not of fears: A closer look at Damocles syndrome in survivors of hematologic malignancies

Blood Rev

2020 Karen Syrjala

Fear of cancer recurrence (FoR) is an important yet underestimated long term sequela that many cancer survivors suffer from. The continuous state of uncertainty the survivors might go through can lead to a serious impact on their quality of life (QoL), which is collectively referred to as Damocles syndrome. Given the increasing numbers of cancer survivors, it is crucial to understand the different psychological issues that face them, including Damocles syndrome. Herein, we review the current literature of Damocles syndrome specifically in hematologic cancer survivors. Although with inconsistent terms, current literature demonstrates the impact and the prevalence of Damocles syndrome on QoL of survivors of leukemia, lymphoma, and hematopoietic cell transplant. Interventional studies are very limited in this area. Moreover, hematologic malignancy survivors can also meet the diagnostic criteria of other psychiatric diseases, including depression, anxiety, and post-traumatic stress disorder, wherein they should be managed accordingly. It is important to increase the awareness about Damocles syndrome and screen patients for it and other related psychological disorders. Additionally, this review has shown the need for standardization of Damocles syndrome definitions. Finally, the lack of interventional studies that target survivors' psychosocial challenges calls for prospective research to better address this rising problem.

Feasibility of a behavioral intervention using mobile health applications to reduce cardiovascular risk factors in cancer survivors: a pilot randomized controlled trial

J Cancer Surviv

2020 Jonathan Bricker; Eric Chow; David Doody; Jeannette Schenk; Chongzhi Di; Guangxing Wang; K. Scott Baker; Anna Hagen; Tyler Ketterl; Stephanie Lee; Marian Neuhouser; Kerryn Reding; Sarah Taylor; Ajay Gopal; Karen Syrjala

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 45.1years; 7.0years 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 6months 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.

Sexual functioning in long-term survivors of hematopoietic cell transplantation

Biol Blood Marrow Transplant

2020 Stephanie Lee; Jean Yi; Lynn Onstad; Ahona Mukherjee; Karen Syrjala

PURPOSE: This investigation characterized sexual activity and sexual function in hematopoietic cell transplantation (HCT) survivors, compared them to norms, and examined factors associated with sexual dysfunction with a goal of identifying targets for intervention to improve sexual health. PATIENTS AND METHODS: Surviving adults from a large transplant 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 (SFQ), Cancer and Treatment Distress (CTXD), and Revised Dyadic Adjustment Scale (RDAS). Clinical data were collected from the transplant medical database. Multivariate logistic regressions identified factors associated with sexual activity and function. RESULTS: Participating survivors (N=1742) were a mean of 11.9 years (range 0.4-43.1) after HCT, mean age 57.6 and 53% male. Women were more likely than men to report not being sexually active in the past year (39% vs 27%) and low sexual function (64% vs 32%) for those sexually active. Male and female survivors reported lower rates of sexual activity and function than comparison norms (all P<.01). In regressions, factors associated with not being sexually active included older age, having less than 4 years of college education, low performance status, and not being in a committed relationship. Additional factors for men included non-myeloablative 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. CONCLUSIONS: 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.

A theoretical model of financial burden after cancer diagnosis

Future Oncol

2020 Salene Jones; Veena Shankaran; Laura Panattoni; Karen Syrjala

Current models of financial burden after cancer do not adequately define types of financial burden, moderators or causes. We propose a new theoretical model to address these gaps. This model delineates the components of financial burden as material and psychological as well as healthcare-specific (affording treatment) versus general (affording necessities). Psychological financial burden is further divided into worry about future costs and rumination about past and current financial burden. The model hypothesizes costs and employment changes as causes, and moderators include precancer socioeconomic status and post-diagnosis factors. The model outlines outcomes affected by financial burden, including depression and mortality. Theoretically derived measures of financial burden, interventions and policy changes to address the causes of financial burden in cancer are needed.

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

Biol Blood Marrow Transplant

2020 Karen Syrjala; Jean Yi

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 (2-10 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 vs. 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 1.00-1.00 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, both 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.

Featured Updates to the NCCN Guidelines

J Natl Compr Canc Netw

2020 Karen Syrjala; K. Scott Baker

The NCCN Guidelines for Survivorship provide screening, evaluation, and treatment recommendations for consequences of adult-onset cancer and its treatment, with the goal of helping healthcare professionals who work with survivors, including those in primary care. The guidelines also provide recommendations to help clinicians promote physical activity, weight management, and proper immunizations in survivors and facilitate care coordination to ensure that all of the survivors' needs are addressed. These NCCN Guidelines Insights summarize additions and changes made to the guidelines in 2020 regarding cardiovascular disease risk assessment and screening for subsequent primary malignancies.

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

Psychooncology

2020 Wendy Leisenring; Abby Rosenberg; Casey Walsh; Karen Syrjala; Marie-Laure Crouch; Jean Yi

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-versus-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. This article is protected by copyright. All rights reserved.

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

Biol Blood Marrow Transplant

2020 Jean Yi; Brianna Sullivan; Mary Flowers; Wendy Leisenring; Katie Maynard; Stephanie Lee; Karen Syrjala

BACKGROUND: 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. MATERIALS AND METHODS: All survivors 2-10 years after HCT for hematologic malignancy or myelodysplasia from six transplant 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 two years. We used logistic regression to determine characteristics of eligible survivors who were more or less likely to enroll. RESULTS: Of 2578 eligible HCT survivors, 1065 (41%) enrolled in the study. Mean age of enrollees was 56.3 (SD=12.6; age range 19 to 89 years), 52% were male, and 94% were White. Survivors less likely to enroll included those who were male, age younger than 40, and who received an autologous transplant (all P<.001). Compared with survivors of white race, African Americans were less likely to enroll (P<.001) while Native Americans/Alaska Natives were more likely to join the study (P=.03). CONCLUSIONS: 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, since their use may improve outcomes.

Risk factors for cancer-related distress in colorectal cancer survivors: one year post surgery

J Cancer Surviv

2020 Karen Syrjala; William Grady; Claire Han; Christopher Li

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 12months 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 12months. 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.