What palliative care-related problems do patients with drug-resistant or drug-susceptible tuberculosis experience on admission to hospital? A cross-sectional self-report study.

BACKGROUND: The new World Health Organization's 'End TB' strategy specifies palliative care within its strategic pillars. Limited data on patient-reported problems are available to inform an effective care response. AIM: We aimed to (1) identify most burdensome problems, (2) compare intensity of problems for drug-susceptible and drug-resistant tuberculosis and (3) identify predictors of problem identifiers. DESIGN: Cross-sectional self-report quantitative study. SETTING/PARTICIPANTS: Self-report palliative care problems (physical, psychological, social and spiritual) were collected among patients on admission to a general district hospital with tuberculosis and multidrug-resistant tuberculosis wards in South Africa. RESULTS: Totally, 114 patients were recruited. The items with worst score responses were worry (60.5%), pain (42.1%), help and advice to plan for the future (35.1%), symptoms (29.0%) and ability to share feelings (25.1%). In ordinal logistic regression, age was predictive of a higher (worse) score for total Palliative Outcome Scale total score (0.058, 95% confidence interval = 0.0018-0.099, p = 0.005) and Factor 2 (interpersonal wellbeing: 0.038, 95% confidence interval = 0.003-0.073, p = 0.031). Interestingly, multidrug-resistant tuberculosis was predictive of lower (better) score for both total Palliative Outcome Scale score and Factor 1 (physical and psychological wellbeing). Weight, human immunodeficiency virus status and prior treatment were not significantly associated with any of the three. CONCLUSION: Currently, patients with drug-susceptible tuberculosis are only admitted to hospital with complications, explaining their worse scores. The high burden of physical and psychosocial problems experienced by our sample provides strong evidence of the need for palliative care alongside potentially curative options.

EAPC White Paper on outcome measurement in palliative care: Improving practice, attaining outcomes and delivering quality services - Recommendations from the European Association for Palliative Care (EAPC) Task Force on Outcome Measurement.

BACKGROUND: Outcome measurement plays an increasing role in improving the quality, effectiveness, efficiency and availability of palliative care. AIM: To provide expert recommendations on outcome measurement in palliative care in clinical practice and research. METHODS: Developed by a European Association for Palliative Care Task Force, based on literature searches, international expert workshop, development of outcome measurement guidance and international online survey. A subgroup drafted a first version and circulated it twice to the task force. The preliminary final version was circulated to wider expert panel and 28 international experts across 20 European Association for Palliative Care member associations and the European Association for Palliative Care Board of Directors and revised according to their feedback. The final version was approved by the European Association for Palliative Care Board for adoption as an official European Association for Palliative Care position paper. RESULTS: In all, 12 recommendations are proposed covering key parameters of measures, adequate measures for the task, introduction of outcome measurement into practice, and national and international outcome comparisons and benchmarking. Compared to other recommendations, the White Paper covers similar aspects but focuses more on outcome measurement in clinical care and the wider policy impact of implementing outcome measurement in clinical palliative care. Patient-reported outcome measure feedback improves awareness of unmet need and allows professionals to act to address patients' needs. However, barriers and facilitators have been identified when implementing outcome measurement in clinical care that should be addressed. CONCLUSION: The White Paper recommends the introduction of outcome measurement into practice and outcomes that allow for national and international comparisons. Outcome measurement is key to understanding different models of care across countries and, ultimately, patient outcome having controlled for differing patients characteristics.

Generating an African palliative care evidence base: the context, need, challenges, and strategies.

The enormous burden of progressive, incurable disease in sub-Saharan Africa is reflected in the epidemiology of cancer and HIV. However, there has been little research activity and evidence generated to inform appropriate and effective responses. A collaborative of clinicians, academics and advocates have been active in the design, delivery and reporting of research activities in African palliative care. Here, they report the methodological, ethical, logistic and capacity-based challenges of conducting research in the sub-Saharan context from their experience. A number of strategies and responses are presented.