Literature DB >> 22221932

Outcomes 'out of africa': the selection and implementation of outcome measures for palliative care in Africa.

Julia Downing1, Steffen T Simon, Faith N Mwangi-Powell, Hamid Benalia, Barbara A Daveson, Irene J Higginson, Richard Harding, Claudia Bausewein.   

Abstract

BACKGROUND: End-of-life care research across Africa is under-resourced and under-developed. A central issue in research in end-of-life care is the measurement of effects and outcomes of care on patients and families. Little is known about the experiences of health professionals' selection and implementation of outcome measures (OM) in clinical care, research, audit, or teaching in Africa.
METHODS: An online survey was undertaken of those using outcome measures across the region, as part of the PRISMA project. A questionnaire addressing the use of OMs was developed for a similar survey in Europe and adapted for Africa. Participants were sampled through the contacts database of APCA. Invitation emails were sent out in January 2010 and reminders in February 2010.
RESULTS: 168/301 invited contacts (56%) from 24 countries responded, with 78 respondents having previously used OM (65% in clinical practice, 12% in research and 23% for both). Main reasons for not using OM were a lack of guidance/training on using and analysing OM, with 49% saying that they would use the tools if this was provided. 40% of those using OM in clinical practice used POS, and 80% used them to assess, evaluate and monitor change. The POS was also the main tool used in research, with the principle criteria for use being validation in Africa, access to the tool and time needed to complete it. Challenges to the use of tools were shortage of time and resources, lack of guidance and training for the professionals, poor health status of patients and complexity of OM. Researchers also have problems analysing OM data. The APCA African POS was the most common version of the POS used, and was reported as a valuable tool for measuring outcomes. Respondents indicated the ideal outcome tool should be short, multi-dimensional and easy to use.
CONCLUSION: This was the first survey on professionals' views on OM in Africa. It showed that the APCA African POS was the most frequently OM used. Training and support are needed to help professionals utilise OM in palliative care, and OMs have an ongoing and important role in palliative care in Africa.

Entities:  

Year:  2012        PMID: 22221932      PMCID: PMC3280153          DOI: 10.1186/1472-684X-11-1

Source DB:  PubMed          Journal:  BMC Palliat Care        ISSN: 1472-684X            Impact factor:   3.234


  26 in total

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Authors:  Richard Harding; Irene J Higginson
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2.  Development of the APCA African Palliative Outcome Scale.

Authors:  Richard A Powell; Julia Downing; Richard Harding; Faith Mwangi-Powell; Stephen Connor
Journal:  J Pain Symptom Manage       Date:  2007-02       Impact factor: 3.612

Review 3.  Evaluation of quality-of-life measures for use in palliative care: a systematic review.

Authors:  Gwenda Albers; Michael A Echteld; Henrica C W de Vet; Bregje D Onwuteaka-Philipsen; Mecheline H M van der Linden; Luc Deliens
Journal:  Palliat Med       Date:  2009-10-20       Impact factor: 4.762

Review 4.  The use of two common palliative outcome measures in clinical care and research: a systematic review of POS and STAS.

Authors:  C Bausewein; C Le Grice; St Simon; Ij Higginson
Journal:  Palliat Med       Date:  2011-04-04       Impact factor: 4.762

5.  Measuring quality of life among HIV-infected women using a culturally adapted questionnaire in Rakai district, Uganda.

Authors:  T C Mast; G Kigozi; F Wabwire-Mangen; R Black; N Sewankambo; D Serwadda; R Gray; M Wawer; A W Wu
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6.  The Memorial Symptom Assessment Scale: an instrument for the evaluation of symptom prevalence, characteristics and distress.

Authors:  R K Portenoy; H T Thaler; A B Kornblith; J M Lepore; H Friedlander-Klar; E Kiyasu; K Sobel; N Coyle; N Kemeny; L Norton
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7.  Professionals' views and experiences of using outcome measures in palliative care.

Authors:  Rhidian Hughes; Fiona Aspinal; Julia Addington-Hall; Jayne Chidgey; Uta Drescher; Maria Dunckley; Irene J Higginson
Journal:  Int J Palliat Nurs       Date:  2003-06

8.  Validation of a core outcome measure for palliative care in Africa: the APCA African Palliative Outcome Scale.

Authors:  Richard Harding; Lucy Selman; Godfrey Agupio; Natalya Dinat; Julia Downing; Liz Gwyther; Thandi Mashao; Keletso Mmoledi; Tony Moll; Lydia Mpanga Sebuyira; Barbara Panjatovic; Irene J Higginson
Journal:  Health Qual Life Outcomes       Date:  2010-01-25       Impact factor: 3.186

9.  Reliability and validity of the Functional Assessment of Chronic Illness Therapy-Palliative care (FACIT-Pal) scale.

Authors:  Kathleen Doyle Lyons; Marie Bakitas; Mark T Hegel; Brett Hanscom; Jay Hull; Tim A Ahles
Journal:  J Pain Symptom Manage       Date:  2008-05-27       Impact factor: 3.612

10.  Improving the quality of Web surveys: the Checklist for Reporting Results of Internet E-Surveys (CHERRIES).

Authors:  Gunther Eysenbach
Journal:  J Med Internet Res       Date:  2004-09-29       Impact factor: 5.428

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2.  Building evidence and capacity in global health palliative care.

Authors:  Richard Harding
Journal:  Ecancermedicalscience       Date:  2022-04-28

Review 3.  The current situation in education and training of health-care professionals across Africa to optimise the delivery of palliative care for cancer patients.

Authors:  Fm Rawlinson; L Gwyther; F Kiyange; E Luyirika; M Meiring; J Downing
Journal:  Ecancermedicalscience       Date:  2014-12-11

4.  Strengthening pharmaceutical systems for palliative care services in resource limited settings: piloting a mHealth application across a rural and urban setting in Uganda.

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Journal:  BMC Palliat Care       Date:  2016-02-19       Impact factor: 3.234

5.  Household concepts of wellbeing and the contribution of palliative care in the context of advanced cancer: A Photovoice study from Blantyre, Malawi.

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6.  Evaluation of the Quality of Dying and Death Questionnaire in Kenya.

Authors:  Kenneth Mah; Richard A Powell; Carmine Malfitano; Nancy Gikaara; Lesley Chalklin; Sarah Hales; Anne Rydall; Camilla Zimmermann; Faith N Mwangi-Powell; Gary Rodin
Journal:  J Glob Oncol       Date:  2019-06

7.  Collaboration across continents to produce e-learning for palliative care education in Sub Saharan Africa.

Authors:  Fm Rawlinson; E Luyirika
Journal:  Ecancermedicalscience       Date:  2014-05-27

8.  Self-report measurement of pain & symptoms in palliative care patients: a comparison of verbal, visual and hand scoring methods in Sub-Saharan Africa.

Authors:  David Blum; Lucy E Selman; Godfrey Agupio; Thandi Mashao; Keletso Mmoledi; Tony Moll; Natalya Dinat; Liz Gwyther; Lydia Mpanga Sebuyira; Barbara Ikin; Julia Downing; Stein Kaasa; Irene J Higginson; Richard Harding
Journal:  Health Qual Life Outcomes       Date:  2014-08-02       Impact factor: 3.186

9.  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.

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Review 10.  Consensus statement on the role of health systems in advancing the long-term well-being of people living with HIV.

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Journal:  Nat Commun       Date:  2021-07-16       Impact factor: 14.919

  10 in total

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