Spiritual Health-related Quality Of Life Research Articles

PSY219 - HEALTH-RELATED QUALITY OF LIFE OF PATIENTS WITH CHRONIC GRAFT VERSUS HOST DISEASE: A SYSTEMATIC LITERATURE REVIEW

Chronic graft versus host disease (cGVHD) is a life-threatening complication of allogeneic hematopoietic stem cell transplantation (HSCT). This study provides a systematic overview of evidence on the health-related quality of life (HRQoL) of patients with cGVHD. Systematic literature review was performed using PubMed. Literature search was limited to English-language articles published between 2007 and 2017. Included studies used the National Institutes of Health Consensus Criteria for diagnosing cGVHD and had a cohort size of at least 100 patients. Data from eligible studies were extracted describing the HRQoL instruments used, and reported HRQoL scores. Seventeen studies were included. Of the 8 HRQoL instruments used across these studies, the 36-item Short Form Health Survey (SF-36; n=14) and the Functional Assessment of Cancer Therapy - Bone Marrow Transplant (FACT-BMT; n=11) were applied most often. Only 1 study compared the HRQoL of HSCT recipients with and without cGVHD, in which cGVHD significantly impaired physical, psychological, social and spiritual HRQoL (p<0.05). cGVHD severity was found to significantly adversely affect patients’ HRQoL. Differences in HRQoL between moderate and severe cGVHD patients were greater than between mild and moderate cGVHD patients. Results indicate cGVHD mostly affects the physical domain of HRQoL. The impact of cGVHD on HRQoL varied by organ involvement; skin, gastrointestinal, lung and joint/fascia manifestations of cGVHD impaired patients’ HRQoL most significantly. Disease severity and organ involvement are both important predictors of HRQoL in cGVHD, and due to heterogeneity of organ involvement across patients, differences in magnitude of HRQoL impairment may be observed. New treatment options that improve the HRQoL in patients with cGVHD are needed. Further studies are also required to better understand the relationships between HRQoL, disease severity, and cGVHD symptoms (e.g. Lee Symptom Scale) between HSCT recipients with and without cGVHD.

Abstract B25: Understanding Racial Differences in Health-Related Quality of Life in a Diverse, Population-Based Cohort of Breast Cancer Survivors in North Carolina

Abstract Objective: There are over 3 million women in the United States living with breast cancer or who have a history of breast cancer. As the number of women undergoing treatments and surviving breast cancer grows, characterizing changes in health-related quality of life (HRQOL) is critical to ensuring patient-centered breast cancer care. Breast cancer risk and burden varies systemically between Black and White women. Black women are more likely to be diagnosed at younger ages and with more aggressive breast cancer tumors. Although racial disparities in HRQOL are well documented, less is known about differences in HRQOL at distinct phases of breast cancer care. Our objective was to assess racial disparities in HRQOL between active treatment and survivorship phases of the breast cancer care continuum. Methods: The study used data from the third phase of the Carolina Breast Cancer Study (CBCS-III). CBCS-III enrolled 3,000 women in North Carolina aged 20-74 years diagnosed with invasive, pathologically confirmed breast cancer between 2008 and 2013. HRQOL assessments occurred 5- and 25-months after diagnosis, respectively, representing distinct phases of care. The Functional Assessment of Cancer Therapy for Breast Cancer and the Functional Assessment of Chronic Illness Therapy for Spiritual Well-Being measured HRQOL. We implemented three approaches (Institute of Medicine, Residual Direct Effect and interactive effects of race and socioeconomic factors) to assessing racial disparities to better understand if racial disparities in HRQOL changes existed and to identify potential mediators of disparities in HRQOL. Analysis of covariance models assessed racial differences in changes in HRQOL between active treatment and survivorship. Adjusted models included demographic, socioeconomic, tumor and treatment characteristics. Results: The cohort included 2,142 Non-Hispanic White (52%) and Black (48%) women with breast cancer who completed both HRQOL assessments. During active treatment, White women reported significantly better physical and functional HRQOL than Black women, but spiritual HRQOL was 2 points higher for Black women. At 25-months post-diagnosis, White women reported HRQOL scores well above U.S norms across physical, social, emotional and functional well-being domains. Black women, however, continued to report physical well-being scores 1.2 points below the U.S norm and 2.3 points below their White breast cancer counterparts. Once demographic, socioeconomic, tumor and treatment characteristics were adjusted for, racial differences narrowed and were not considered clinically meaningful. Conclusions: Racial differences in physical and functional HRQOL may be mediated by socioeconomic factors. Psychosocial and spiritual HRQOL seem well supported, mitigating negative effects of breast cancer care, especially among Black women. These results inform opportunities for improving the quality and equity of supportive services for women with breast cancer. Citation Format: Laura C. Pinheiro, Cleo A. Samuel, Katherine E. Reeder-Hayes, Stephanie B. Wheeler, Andrew F. Olshan, Bryce B. Reeve. Understanding Racial Differences in Health-Related Quality of Life in a Diverse, Population-Based Cohort of Breast Cancer Survivors in North Carolina. [abstract]. In: Proceedings of the Ninth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2016 Sep 25-28; Fort Lauderdale, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2017;26(2 Suppl):Abstract nr B25.

To be young, Black, and living with breast cancer: a systematic review of health-related quality of life in young Black breast cancer survivors.

Compared with young White women, young Black women are more likely to present with aggressive breast cancer (BC) subtypes that are potentially linked to worse health-related quality of life (HRQOL); however, there is limited consensus regarding HRQOL needs among young Black BC survivors. Employing Ferrell's framework on QOL in BC (i.e., physical, psychological, social, and spiritual well-being), we conducted a systematic review on HRQOL among Black BC survivors aged <50years and proposed recommendations for advancing HRQOL research and care for this population. Literature searches were conducted in MEDLINE/PubMed, EMBASE, CINAHL, and PsycINFO to identify relevant articles published from 1995 to 2015. Abstracts and full-text articles were screened using predetermined inclusion/exclusion criteria and evaluated for quality. A total of 2533 articles were identified, but six met eligibility criteria. Most studies examined multiple HRQOL domains, with the psychological domain most represented. Compared with their older, White, and BC-free counterparts, young Black BC survivors reported greater fear of dying, unmet supportive care needs, financial distress, and lower physical/functional well-being. However, spiritual well-being appeared favorable for young Black survivors. Research gaps include the absence of longitudinal studies and under-representation of studies examining physical, social, andparticularly, spiritual HRQOL in young Black BC survivors. Young Black BC survivors generally experience suboptimal HRQOL after BC diagnosis. As few studies have reported on HRQOL among this group, future research and oncology care should prioritize young Black women in ways that recognize their unique concerns, in order to ensure better HRQOL outcomes both during and after treatment.

Understanding racial differences in health-related quality of life in a population-based cohort of breast cancer survivors.

Although racial disparities in health-related quality of life (HRQOL) among women with breast cancer (BC) are well documented, less is known about HRQOL changes over time among women of different races. Our objective was to assess racial differences in HRQOL during active treatment and survivorship phases of BC care. We used data from the third phase of the Carolina Breast Cancer Study (CBCS-III). CBCS-III enrolled 3000 women in North Carolina aged 20-74years diagnosed with BC between 2008 and 2013. HRQOL assessments occurred 5 and 25 months post diagnosis, representing distinct phases of care. HRQOL measures included the Functional Assessment of Cancer Therapy for BC and Functional Assessment of Chronic Illness Therapy for Spiritual Well-Being. Analysis of covariance models were employed to assess racial differences in changes in HRQOL. The cohort included 2142 Non-Hispanic White (n=1105) and Black women (n=1037) who completed both HRQOL assessments. During active treatment, Whites reported physical and functional scores 2-2.5 points higher than Blacks (p<0.0001). Spiritual HRQOL was 2.1 points higher for Blacks (p<0.0001). During survivorship, differences persisted. After adjusting for demographic, socioeconomic, tumor, and treatment characteristics, physical and functional HRQOL gaps narrowed, but spiritual HRQOL gaps widened. Racial differences in physical and functional HRQOL during active treatment and survivorship may be largely mediated by socioeconomic factors. However, our results suggest that among Black women, spiritual HRQOL is well supported throughout the BC care continuum. These results inform opportunities for improving the quality and equity of supportive services for women with BC.

Cancer experiences and health-related quality of life among racial and ethnic minority survivors of young adult cancer: a mixed methods study.

Young adult (YA) racial and ethnic minority survivors of cancer (diagnosed ages 18-39) experience significant disparities in health outcomes and survivorship compared to non-minorities of the same age. However, little is known about the survivorship experiences of this population. The purpose of this study is to explore the cancer experiences and health-related quality of life (HRQOL) among YA racial/ethnic minorities in an urban US city. Racial and ethnic minority YA cancer survivors (0 to 5years posttreatment) were recruited from a comprehensive cancer center using a purposive sampling approach. Participants (n=31) completed semi-structured interviews, the FACT-G (physical, emotional, social well-being) and the FACIT-Sp (spiritual well-being). Mixed methods data were evaluated using thematic analysis and analysis of covariance (ANCOVA). The majority of survivors were women (65%), single (52%), and Hispanic (42%). Across interviews, the most common themes were the following: "changes in perspective," "emotional impacts," "received support," and "no psychosocial changes." Other themes varied by racial/ethnic subgroups, including "treatment effects" (Hispanics), "behavior changes" (Blacks), and "appreciation for life" (Asians). ANCOVAs (controlling for gender and ECOG performance status scores) revealed that race/ethnicity had a significant main effect on emotional (P=0.05), but not physical, social, or spiritual HRQOL (P>0.05). Our findings suggest that minority YA cancer survivors report complex positive and negative experiences. In spite of poor health outcomes, survivors report experiencing growth and positive change due to cancer. Variations in experiences and HRQOL highlight the importance of assessing cultural background to tailor survivorship care among YA racial and ethnic minorities.

How oncologists and their patients with advanced cancer communicate about health‐related quality of life

To describe the content and frequency of communication about health-related quality of life (HRQOL) during outpatient encounters between oncologists and their patients with advanced cancer. We coded for HRQOL talk in a subset of audio-recorded conversations (each previously found to contain prognostic talk by the oncologist) from the Study of Communication in Oncologist-Patient Encounters Trial, a randomized controlled trial conducted from 2003 to 2008 in two large US academic medical centers and one Veterans Affairs Medical Center. Seventy-three encounters involved 70 patients and 37 oncologists. Patients were more likely to be female (53%), White (86%), married (78%), and possessing some college education (62%). Most oncologists were male (78%) and White (78%). Mean ages were 59 years for patients and 44 years for oncologists. Every encounter included some talk about HRQOL and HRQOL discussions made up, on average, 25% of the visit time. HRQOL segments described symptoms (50%), general HRQOL (27%), and the following concerns: physical (27%), functional (22%), psychological (9%), social (7%), spiritual (1%), and other (28%). Topics included treatment (56%), disease (14%), and testing (3%), and conversations focused on past (44%), present (68%), and future HRQOL (59%). HRQOL discussions between oncologists and patients are common, but the emphasis is often on treatment (e.g. side effects) and symptoms (e.g. pain) even in patients with advanced disease. Given the often intense emotional experience of patients with advanced cancer, oncologists may need to pay more attention to psychological, social, and spiritual HRQOL concerns.

C-C4-02: Improving Survivorship Care for Long-Term Colorectal Cancer Survivors: Key Findings of a 5-Year Study

Aims: Understand the determinants of health related quality of life (HRQOL) and the lived experiences among colorectal cancer (CRC) survivors, and identify strategies to help maintain or enhance CRC survivors’ HRQOL. Methods: Mail survey and focus groups. Subjects were 283 ostomy and 392 anastomosis long-term CRC survivors within an HMO. Focus groups for subjects with ostomy were divided by gender and high and low HRQOL. Outcome measures were the modified City of Hope Quality of Life (mCOH-QOL)-Ostomy (abridged for anastomosis) and SF-36v2 questionnaires. The SF-6D scoring algorithm was used to calculate an overall HRQOL score from SF-36v2 data. Focus groups were conducted to explore ostomy-related barriers to effective self-care and adaptation strategies. Results: CRC survivors with an ostomy experienced multiple persistent HRQOL losses that differ between men and women. Women CRC survivors with ostomies, for example, reported more sleep disruption and fatigue than men. Living with an ostomy, co-morbidities, socioeconomic status, self-reported depression, and employment status were independent predictors of SF-6D scores. Among CRC survivors with ostomy, fistulas had important implications for HRQOL. Psychological wellbeing among CRC survivors was positively associated with income. Intestinal stomas significantly influenced spiritual HRQOL. Provision or withdrawal of a partners’ support affected both short- and long-term psychosocial adjustment of female CRC ostomy patients. Focus group participants identified dietary changes to control bowel output and odor, demands of coping and adjustment, and the time it took to accept the reality of daily living with an ostomy as significant challenges. Conclusions: The greatest challenges reported by CRC survivors confirmed the IOMs findings that survivorship is a distinct, chronic phase of cancer care, and that cancer effects are broad and pervasive. CRC survivors could benefit from dietary and behavioral interventions even 5+ years after their cancer surgery. Women with ostomies seem to do worse than men with ostomies and report a different profile of HRQOL challenges, including sleep disruption and fatigue. Depression screening and psychosocial interventions should be part of survivorship care for CRC patients. CRC survivors should be assessed for income and financial need. Survivorship care should aim at minimizing hospitalizations, depression, and ostomy-related complications among long- term CRC survivors.