Abstract
Context
In sub-Saharan Africa, there is no standardized approach to pediatric palliative care
assessment. Because of this, there is a critical demand for evidence-based assessment
tools that identify the specialized needs of children and their families requiring
palliative care in developing countries.
Objectives
To develop a standardized approach to pediatric palliative care (PPC) assessment that
includes an individualized plan of care for use in sub-Saharan Africa.
Methods
A Delphi method approach used five rounds to explore core elements that define the
essential assessment attributes mandatory for providing excellence in PPC. Using the
Delphi method, the consensus from 11 PPC experts was obtained during four Delphi rounds
regarding the most important questions to include in a PPC assessment tool and plan
of care. During the final Delphi round 5, the expert consensus was confirmed in a
separate group of 36 childhood cancer/palliative care clinical providers.
Results
Five core elements were developed as the foundation for a PPC assessment. A symptom
assessment tool was developed that includes 15 symptoms that PPC experts agreed occurred
more than 65% of the time in their patients.
Conclusion
The Delphi method was an effective tool to develop a consensus on a PPC assessment
tool to use with children and their families in sub-Saharan Africa. This standardized
approach will enable the collection of data to drive outcomes and research.
Key Words
To read this article in full you will need to make a payment
Purchase one-time access:
Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online accessOne-time access price info
- For academic or personal research use, select 'Academic and Personal'
- For corporate R&D use, select 'Corporate R&D Professionals'
Subscribe:
Subscribe to Journal of Pain and Symptom ManagementAlready a print subscriber? Claim online access
Already an online subscriber? Sign in
Register: Create an account
Institutional Access: Sign in to ScienceDirect
References
- Mapping levels of palliative care development in 198 Countries: the situation in 2017.J Pain Symptom Manage. 2020; 59 (e4): 794-807https://doi.org/10.1016/j.jpainsymman.2019.11.009
- Estimating the global need for palliative care for children: a cross-sectional analysis.J Pain Symptom Manage. 2017; 53: 171-177https://doi.org/10.1016/j.jpainsymman.2016.08.020
- Factors affecting palliative care development in Africa: In-Country experts' perceptions in seven countries.J Pain Symptom Manage. 2018; 55 (e2): 1313-1320https://doi.org/10.1016/j.jpainsymman.2018.01.009
- Validation of a core outcome measure for palliative care in Africa: the APCA African Palliative Outcome Scale.Health Qual Life Outcomes. 2010; 8: 10https://doi.org/10.1186/1477-7525-8-10
- PRISMA. The use of two common palliative outcome measures in clinical care and research: a systematic review of POS and STAS.Palliat Med. 2011; 25: 304-313https://doi.org/10.1177/0269216310395984
- Validity of the support team assessment schedule: do staffs' ratings reflect those made by patients or their families?.Palliat Med. 1993; 7: 219-228https://doi.org/10.1177/026921639300700309
- PRISMA. Republished: which questions of two commonly used multidimensional palliative care patient reported outcome measures are most useful? Results from the European and African PRISMA survey.Postgrad Med J. 2012; 88: 451-457https://doi.org/10.1136/postgradmedj-2011-000061rep
- Outcome measurement in paediatric palliative care: lessons from the past and future developments.Ann Palliat Med. 2018; 7 (Suppl): S151-S163https://doi.org/10.21037/apm.2018.04.02
- Improving hospice outcomes through systematic assessment: a clinical trial.Cancer Nurs. 2011; 34: 89-97https://doi.org/10.1097/NCC.0b013e3181f70aee
- The impact of palliative care consultation on symptom assessment, communication needs, and palliative interventions in pediatric patients with cancer.J Palliat Med. 2009; 12: 343-349https://doi.org/10.1089/jpm.2008.0152
- Establishing psychosocial palliative care standards for children and adolescents with cancer and their families: an integrative review.Palliat Med. 2016; 30: 212-223https://doi.org/10.1177/0269216315583446
- Status of palliative oncology care for children and young people in Sub-Saharan Africa: a perspective paper on priorities for new frontiers.JCO Glob Oncol. 2021; 7: 1395-1405https://doi.org/10.1200/GO.21.00102
World Health Organization. Monitoring the building blocks of health systems: A handbook of indicators and their measurement strategies. Geneva: World Health Organization; 2010. https://www.who.int/healthinfo/systems/WHO_MBHSS_2010_full_web.pdf
- Research guidelines for the Delphi survey technique.J Adv Nurs. 2000; 32: 1008-1015https://doi.org/10.1046/j.1365-2648.2000.t01-1-01567.x
- The Delphi technique: making sense of consensus.Pract Assess Res. 2007; 12: 1-9https://doi.org/10.7275/pdz9-th90
- The Delphi method as a research tool: An example, design considerations and applications.Inform Manag. 2004; 42: 15-29https://doi.org/10.1016/j.im.2003.11.002
- Association for Children with Life-threatening or Terminal Conditions and their Families (ACT). A Guide to the Development of Children's Palliative Care Services.4th ed. ACT, Bristol2018
Aslakson R, Dy SM, Wilson RF, et al. Assessment tools for palliative care, technical brief no. 30. Rockville: Agency for healthcare research and quality; 2017. 10.23970/AHRQEPCTB30.
- Palliative care in paediatric oncology: an Update [published online ahead of print, 2022 Jan 21].Curr Oncol Rep. 2022; https://doi.org/10.1007/s11912-021-01170-3
Article info
Publication history
Published online: February 20, 2022
Accepted:
February 15,
2022
Identification
Copyright
© 2022 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
