RPD219 - Malawian Caregiver Perception of the Quality of Dying and Death Questionnaire- Revised Global-Version

Key Message : This study translated and evaluated the content validity of the Chichewa version of the QODD-Revised Global Version (QODD-RGV) questionnaire, a proxy-rated, modified measure of the quality of dying and death. Using cognitive interviews with bereaved caregivers of patients who died of cancer in Malawi, we confirmed cultural validity and understandability.

Abstract: Background
Measuring the quality of dying and death is an important component of improving end-of-life (EOL) care, but measures of this outcome have not been available for use in low-resource settings (1,2). The QODD-Revised Global Version (QODD-RGV) questionnaire, a 26-item, proxy-rated measure assessing EOL care was created to address the need for EOL measures with cross-cultural validity (3). The Chichewa version of the QODD-RGV was evaluated for content validity through cognitive interviews with bereaved caregivers of cancer patients in Malawi.

Methods
We undertook a rigorous, stepwise forward- and back-translation process into Chichewa, including expert panel review. We recruited caregivers of patients who received care at the Kamuzu Central Hospital Oncology Clinic 4-6 months after death. Caregivers completed the QODD-RGV and participated in cognitive interviews, sharing reasoning for individual responses. Interviews were recorded, transcribed, translated into English, and independently coded by two team members followed by consensus coding. Qualitative content analysis assessed the sources of information participants relied on, the judgement strategies used to inform responses, and difficulties in responding.

Results
Twenty-five bereaved caregivers participated in the cognitive interview protocol. Participants most responded to items from the perspective of the patient. All participants used multiple judgment strategies to respond to questionnaire items. Items of the Chichewa version of the QODD-RGV were found by participants to be relevant and understandable. The judgement strategy used most often was comparison to “state of distress or no distress.” Response difficulty was most frequently due to “no communication with patient regarding that aspect of experience.” Caregivers emphasized the importance of communication, emotional support, and involvement in decision-making to quality of care.

Conclusions
These findings support the content validity of the Chichewa version of the QODD-RGV and will inform a full validation study, which has the potential to guide improvements for EOL care in low-resource settings.

References: 1. Mah K, Namisango E, Luyirika E, et al. Quality of Dying and Death of Patients With Cancer in Hospice Care in Uganda. JCO Glob Oncol 2023;9:e2200386; doi: 10.1200/GO.22.00386.
2. Mah K, Powell RA, Malfitano C, et al. Evaluation of the Quality of Dying and Death Questionnaire in Kenya. J Glob Oncol 2019;5:1–16; doi: 10.1200/JGO.18.00257.
3. An E, Tilly A, Mah K, et al. Protocol for the development and multisite validation of the Quality of Dying and Death-Revised Global Version scale. BMJ Open 2022;12(7):e064508; doi: 10.1136/bmjopen-2022-064508.