Improving Global Oncology Palliative Care: Measurement and Intervention Adaptation in Malawi

The global prevalence of and mortality from cancer continue to rise, particularly in low-resource settings. Palliative care has been shown to alleviate suffering and maximize quality of life in patients with advanced cancer, but most research has been conducted in high-resource settings. Equity in access to palliative care in low- and middle-income countries (LMICs) is limited by the lack of validated, culturally relevant outcome measurement tools and palliative care interventions. The Quality of Dying and Death questionnaire (QODD) is a caregiver-proxy outcome measure and the most widely used quantitative measure of the subjective experience of dying but lacks cultural relevance when applied in LMICs. To address this, the applicant and her mentorship team have developed a Revised Global Version of the QODD (QODD-RGV), for use across the entire range of resource settings. In addition, a nurse-led culturally sensitive Symptom Toolkit intervention for adolescent and young adults with lymphoma has been pilot tested, demonstrating its feasibility in a LMIC. The proposed research aims seek to extend this work by (1) establishing psychometric properties of the QODD-RGV in Chichewa and (2) adapting and evaluating the Symptom Toolkit intervention for use in an advanced cancer patient population at end-of-life. The present study will enroll participants in Malawi, an LMIC with existing oncology research collaborations through the UNC Project-Malawi Cancer Program, where the applicant serves as the Director of Palliative Care. Through completion of these scientific aims, the applicant will address the following key knowledge gaps in her training goals: (1) cultural adaptation of palliative care outcome measures for low-resource settings (2) design of palliative care interventions for low-resource settings, and (3) conduct of palliative care clinical trials in low-resource settings. In summary, this mentored K08 award will pave the way for future translation and validation of the QODD-RGV and adaptation of oncology palliative care interventions in other LMICs. This will facilitate global oncology research on palliative care and establish the applicant to transition to an independent physician scientist and a leading investigator in the field of evidence-based global oncology palliative care.