Guided by the World Health Organization quality of life (WHOQOL) framework, this systematic review aimed to examine evidence about the prevalence and severity of QOL-related health problems and their influencing factors in Sub-Saharan Africa (SSA). We identified eligible publications in English language from PubMed, Cumulative Index of Nursing and Allied Health Literature Plus with Full Text, Embase, APA PsycInfo, Scopus, and African Index Medicus databases. We included quantitative descriptive studies that measured overall and subdomains of QOL as the outcome in adult patients/survivors with cancer in SSA. Twenty-six descriptive cross-sectional studies (27 papers) that were conducted since 1988 in different SSA countries among patients with various types of cancer met our inclusion criteria. We found inconsistencies in how the prevalence and severity of QOL-related health problems have been researched and reported across studies, which complicated comparing findings and drawing conclusions. The most common factors that influenced the overall and subdomains of QOL included coping; internal and external locus of control; symptoms and symptom management; and religious beliefs and religious care. Demographics (e.g., age and marital status), cancer-related factors (cancer stage and type of treatment), and social determinants of health (e.g., education, access to information and resources, financial distress, and urban vs rural residency) also impacted QOL and its subdomains. Our findings indicate the significant need for recognizing and managing QOL-related problems for cancer patients and caregivers in SSA. Research needs to use culturally adapted, standardized assessment tools and analysis approaches to better understand the QOL challenges this population faces. Comprehensive supportive care is needed to address the complex QOL issues in resource-limited SSA.
Background Men with localized prostate cancer often experience urinary, sexual, bowel, and hormonal symptoms; general distress; pain; fatigue; and sleep disturbance. For men in an intimate relationship, these symptoms disrupt couples’ relationships and intimacy. The symptoms also reduce quality of life for both men and their partners, who are often their primary caregivers. Management of the negative effects of cancer and its treatment is a significantly under-addressed supportive care need for these men and their intimate partners. To address these unmet supportive care needs, our interdisciplinary team developed and pilot tested the usability and feasibility of an evidence-based, couple-focused, tailored eHealth intervention, “Prostate Cancer Education & Resources for Couples” (PERC). Based on the adapted stress and coping theoretical framework and developed with stakeholder involvement, PERC aims to improve quality of life for both men and their partners by enhancing their positive appraisals, self-efficacy, social support, and healthy behaviors for symptom management. Methods We will test the efficacy of PERC using a population-based, geographically and demographically diverse cohort in a randomized controlled trial. Primary aim: Assess if patients and partners receiving PERC will report greater improvement in their cancer-related quality of life scores than those in the control group (usual care plus the National Cancer Institute prostate cancer website) at 4, 8, and 12 months post-baseline. Secondary aim: Test if patients and partners in PERC will report significantly more positive appraisals and higher levels of coping resources at follow-ups than those in the control group. Exploratory aim: Determine if patient race and ethnicity, education, type of treatment, or couples’ relationship quality moderate the effects of PERC on patient and partner QOL at follow-ups. Discussion This study will provide a novel model for self-managing chronic illness symptoms that impact couples’ relationships, intimacy, and quality of life. It addresses the National Institute of Nursing Research’s goal to develop and test new strategies for symptom self-management to help patients and caregivers better manage their illness and improve quality of life. It also responds to calls for programs from the Institute of Medicine and American Cancer Society to address treatment-related effects and improve survivors’ QOL. Trial registration CT.gov NCT03489057
Family-based psychosocial behavioral interventions (PBIs) that target both the cancer patients and their caregivers may more effectively help them with self-care and improve quality of life; however, family-based PBIs often face unique challenges during study implementation. This systematic review aimed to a) examine the recruitment and retention rates of cancer patients and their caregivers in clinical trials testing family-based PBIs; and b) explore the recruitment and retention strategies. We systematically searched five electronic databases to identify randomized controlled trials that tested family-based psychosocial or behavioral interventions among adult patients with cancer and their adult family caregivers. Our searches yielded 48 studies. The average recruitment rates of patients and caregivers were 56.8% (SD=31.8%; range=8-100%) and 54.5% (SD=32.4%; range=8-100%), respectively. The majority of the studies have focused on white and female patients and caregivers. The average retention rate at end of follow-up times was 69.1%. Only 13 studies reported retention strategies, including providing money/gift cards upon returning of each follow-up survey or study completion, and excluding advanced cancer patients. Reasons for attrition, i.e., dropping out of studies, were classified as: health-related (e.g., death, illness, psychological distress), intervention-related (e.g., intervention does not meet expectation, frustration with group allocation, intervention burden) and other reasons (e.g. lack of time, unable to establish contact). Recruitment and retention of patients and caregivers in family-based PBI are integral to the success of interventions. Researchers need to incorporate effective strategies for optimizing recruitment and retention at the planning stage of their studies.
Background: Men with localized prostate cancer often experience urinary, sexual, bowel, and hormonal symptoms, general distress, pain, fatigue, and sleep disturbance. For men in an intimate relationship, these symptoms disrupt couples’ relationships and intimacy. The symptoms also reduce quality of life of both men and their partners, who are often their primary caregivers. Management of the negative effects of cancer and its treatment is a significantly under-addressed supportive care need for these men and their intimate partners. To address these unmet supportive care needs, our interdisciplinary team developed and pilot tested the usability and feasibility of an evidence-based, couple-focused, tailored eHealth intervention, “Prostate Cancer Education & Resources for Couples” (PERC). Based on the adapted stress and coping theoretical framework and developed with stakeholder involvement, PERC aims to improve quality of life for both men and their partners by enhancing their positive appraisals, self-efficacy, social support, and healthy behaviors for symptom management.Methods: We will test the efficacy of PERC using a population-based, geographically and demographically diverse cohort in a randomized controlled trial. Primary Aim: Assess if patients and partners receiving PERC will report greater improvement in their cancer-related quality of life scores than those in the control group (usual care plus the National Cancer Institute prostate cancer website) at 4, 8, and 12 months post-baseline. Secondary Aim: Test if patients and partners in PERC will report significantly more positive appraisals and higher levels of coping resources at follow-ups than those in the control group. Exploratory Aim: Determine if patient race and ethnicity, education, type of treatment, or couples’ relationship quality moderate the effects of PERC on patient and partner QOL at follow-ups..Discussion: This study will provide a novel model for self-managing chronic illness symptoms that impact couples’ relationships, intimacy, and quality of life. It addresses the National Institute of Nursing Research’s goal to develop and test new strategies for symptom self-management to help patients and caregivers better manage their illness and improve quality of life. It also responds to calls for programs from the Institute of Medicine and American Cancer Society to address treatment-related effects and improve survivors’ QOL..Trial registration: CT.gov ID: NCT03489057
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