Adult patients with cancer in Uganda: validation of the tool, health-related quality of life, and patient experiences

Abstract

Background: This study aimed to assess the validity and reliability of the Luganda version of the tool used to measure health-related quality of life (HRQoL), specifically the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-C30 (EORTC QLQ-C30). The study sought to investigate the prevalence of poor HRQoL concerning clinical and sociodemographic characteristics and to describe the experiences of adult cancer patients undergoing treatment at a specialized cancer facility in Uganda. Methods: A sequential explanatory multi-method study was conducted at the Uganda Cancer Institute among adult patients with various types and stages of cancer. Clinical and sociodemographic information was collected using study-specific items and patients' medical records. Sub-study 1: Tool validation evaluated the reliability and validity (including construct, known group, and criterion validity) of the Luganda and English versions of the EORTC QLQ-C30 instrument. Sub-study 2: This sub-study investigated the prevalence of and factors associated with poor health-related quality of life (HRQoL). It used predetermined validated clinical thresholds to identify patients with poor HRQoL and conducted multivariable logistic regression analysis to determine the associated factors. Sub-study 3: This sub-study described the experiences of adult men and women receiving treatment at a specialized cancer facility, utilizing reflexive thematic analysis. Main results: Sub-study 1. Construct validity, CFA yielded good fit indices (RMSEA = 0.08, SRMR = 0.05, and CFI = 0.93). Known-groups validity was supported by statistically significant better HRQoL among patients with early-stage compared to those in late-stage. Criterion validity: positive correlations between the Karnofsky Performance Scale and the Physical Function (0.75 - 0.76) and Global quality of life (0.59 - 0.72) for Luganda and English versions, respectively. Cognitive function did not reach acceptable Cronbach’s alpha values (Luganda α =0.66, English α = 0.50). Sub-study 2: (68%−87%) reported functional impairment and symptoms of pain (80%) and fatigue (63%). Increasing age, no formal education, unemployment, being an inpatient, diagnosed with cervical cancer or leukemia were factors associated with poor HRQoL. Sub-study 3: Organisation of care, personal challenges, mental suffering, and satisfaction with care were the themes generated. Conclusion: The validated Luganda and English versions of the EORTC QLQ-C30 appear to be a valid and reliable instrument recommended for assessing HRQOL in adult Ugandans with cancer. Most patients reported poor functioning and a significant burden of symptoms, including pain and fatigue, that warrant concern. The prevalence of poor health-related quality of life (HRQoL) is especially noticeable among older adults, those without formal education, and those who are unemployed. Furthermore, being an inpatient and having a cancer diagnosis are both linked to a lower quality of life related to health. Patients also described their penurious experiences of care, including inadequate infrastructure and resources (food, staff, and drugs), delays in accessing care, the poor health system, and high treatment costs as well as stigma, abandonment, isolation, and emotional distress. This situation calls for policymakers'’ interventions including a need to adapt and adopt the cancer pain management clinical guidelines in the Ugandan context, development of a psychosocial oncology center, and training of health professionals Policymakers are urged to update the budget for cancer care to improve the infrastructural challenges and ensure adequate resources, decentralize cancer care for easier access, and create awareness about cancer and its treatment to reduce stigma.