Evaluation of the Quality of Dying and Death Questionnaire in Kenya

Abstract

PURPOSE A culturally appropriate, patient-centered measure of the quality of dying and death is needed to advance palliative care in Africa. We therefore evaluated the Quality of Dying and Death Questionnaire (QODD) in a Kenyan hospice sample and compared item ratings with those from a Canadian advanced-cancer sample. METHODS Caregivers of deceased patients from three Kenyan hospices completed the QODD. Their QODD item ratings were compared with those from 602 caregivers of deceased patients with advanced cancer in Ontario, Canada, and were correlated with overall quality of dying and death ratings. RESULTS Compared with the Ontario sample, outcomes in the Kenyan sample (N = 127; mean age, 48.21 years; standard deviation, 13.57 years) were worse on 14 QODD concerns and on overall quality of dying and death ( P values ≤ .001) but better on five concerns, including interpersonal and religious/spiritual concerns ( P values ≤ .005). Overall quality of dying was associated with better patient experiences with Symptoms and Personal Care, interpersonal, and religious/spiritual concerns ( P values < .01). Preparation for Death, Treatment Preferences, and Moment of Death items showed the most omitted ratings. CONCLUSION The quality of dying and death in Kenya is worse than in a setting with greater PC access, except in interpersonal and religious/spiritual domains. Cultural differences in perceptions of a good death and the acceptability of death-related discussions may affect ratings on the QODD. This measure requires revision and validation for use in African settings, but evidence from such patient-centered assessment tools can advance palliative care in this region.

Translation, Validity and Internal Consistency of the Quality of Dying and Death Questionnaire for Brazilian families of patients that died from cancer: a cross-sectional and methodological study

“…This evaluation is related to the memories of family caregivers in retrospective evaluation reports, but memory, emotions, and other person-related factors may bias their reports. 29,30 To minimize these effects, the family caregivers were contacted at least 4 weeks and no later than 12 weeks after the death of the patient.…”

Protocol for the development and multisite validation of the Quality of Dying and Death-Revised Global Version scale

“…Our research with the QODD in Kenya, with proxy ratings provided by bereaved caregivers, revealed high missing response rates (ie, >10% omitted ratings) in QODD items that pertained to treatment preferences, preparation for death, end-of-life care discussion with doctors, medical prolongation of life and the moment of death and that suggested their lack of cultural relevance. 22 A version of the QODD with cross-culturally generalisable items that are less burdensome to complete would be of value to support palliative care research and clinical care in higher-resource and lower-resource settings. The creation of such a measure is responsive to the call for the development of reliable and valid outcome measures that are generalisable to high-resource and low-resource settings.…”

“…Our research with the QODD in Kenya, with proxy ratings provided by bereaved caregivers, revealed high missing response rates (ie, >10% omitted ratings) in QODD items that pertained to treatment preferences, preparation for death, end-of-life care discussion with doctors, medical prolongation of life and the moment of death and that suggested their lack of cultural relevance. 22 …”

Quality of Dying and Death of Patients With Cancer in Hospice Care in Uganda

“…We previously reported on the quality of dying and death in Kenyan hospices, 14 as rated by bereaved caregivers using the Quality of Dying and Death Questionnaire (QODD). 15 , 16 Compared with caregivers in Ontario, Canada, Kenyan caregivers reported poorer quality of dying and death, with worse ratings on 14 of 31 items reflecting symptoms (including pain control), preparation for death, treatment preferences, whole-person concerns, and moment of death domains, but better interpersonal and religious-spiritual experiences.…”