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The Palliative Care Outcome Scale as a Screening Tool: Unveiling problems and concerns for patients with diabetes, chronic respiratory and cardiovascular diseases

Author: Eve Namisango, Research Manager, The African Palliative Care Association
30 November 2017

A commonly held misnomer is that except for cancer, patients with other non-communicable diseases do not need palliative care. In 2015, with funding from the Open Society Initiative for Southern Africa, the African Palliative Care Research Network conducted a study that aimed to contribute to the burgeoning non-communicable disease (NCD) global agenda.

This was an exploratory study on patient-self reported concerns and symptoms among patients diagnosed with cancer, diabetes, chronic respiratory or cardiovascular disease. This study was conducted in two Southern African countries; Namibia and Malawi and a total of 457 ambulatory patients self-ported their symptoms and concerns.

On 2nd August and 5th August, 2016, stakeholders from tertiary hospitals, academia, ministries of health, national palliative care associations, and patient support groups held country specific meetings to share study findings. The results sharing was linked to use of this evidence to inform service development.  

Study findings showed a high prevalence of palliative care–related problems. The three palliative care-related problems with the highest intensity were:

  1. Shared feelings (i.e., not at all/not very often). The proportions reporting high intensity were 28% cardiovascular diseases (CVDs,) 23% chronic respiratory diseases (CRDs), 22% cancer and 21% for diabetes.
  2. Help and advice (i.e., none/very little): 28% cancer, 26% CVDs, 22% diabetes, and 16% CRDs.
  3. Worry (i.e., most/all the time): 27% cancer, 18% CVDs, 18% diabetes and 14% CRDs. 

The most prevalent physical symptom was: pain, reported by 78% (n=115) of cancer patients, 68% (n=89) of CVD patients, 68% (n=49) of CRD patients and 73% (n=78) of patients with diabetes.

Key outcomes of the two meetings included: development of national advocacy agendas for increasing access to palliative care for patients living with NCDs, formation of a palliative care taskforce in Namibia, and advancing the use of patient self-reported data in service development.

“I agree we need to strengthen the integration of palliative care within the program for non-communicable diseases. These patients have complex needs and can greatly benefit from the multi-disciplinary holistic family centered approach to care. This will by all means improve their quality of life”.  Ministry of Health official, Malawi.

“Is there a better approach to negotiating for inclusion of palliative care in the national strategic plan for non-communicable diseases which is being drafted? The patients have spoken and this is all we needed, the evidence from those affected and I pledge to include a section on palliative care in this strategy because patients need it”.  Ministry of Health and S Services official, Namibia.

Please see full study report here:

The writer is a BuildCARE PhD training fellow at Cicely Saunders Institute King’s College London and research manager at the African Palliative Care Association.

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