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

Dept Palliative Care, King's College London, Weston Education Centre, Denmark Hill, London SE5 9RJ, UK.
Health and Quality of Life Outcomes (Impact Factor: 2.12). 01/2010; 8(1):10. DOI: 10.1186/1477-7525-8-10
Source: PubMed


Despite the burden of progressive incurable disease in Africa, there is almost no evidence on patient care or outcomes. A primary reason has been the lack of appropriate locally-validated outcome tools. This study aimed to validate a multidimensional scale (the APCA African Palliative Outcome Scale) in a multi-centred international study.
Validation was conducted across 5 African services and in 3 phases: Phase 1. Face validity: content analysis of qualitative interviews and cognitive interviewing of POS; Phase 2. Construct validity: correlation of POS with Missoula-Vitas Quality of Life Index (Spearman's rank tests); Phase 3. Internal consistency (Cronbach's alpha calculated twice using 2 datasets), test-retest reliability (intraclass correlation coefficients calculated for 2 time points) and time to complete (calculated twice using 2 datasets).
The validation involved 682 patients and 437 family carers, interviewed in 8 different languages. Phase 1. Qualitative interviews (N = 90 patients; N = 38 carers) showed POS items mapped well onto identified needs; cognitive interviews (N = 73 patients; N = 29 carers) demonstrated good interpretation; Phase 2. POS-MVQoLI Spearman's rank correlations were low-moderate as expected (N = 285); Phase 3. (N = 307, 2nd assessment mean 21.2 hours after first, SD 7.2) Cronbach's Alpha was 0.6 on both datasets, indicating expected moderate internal consistency; test-retest found high intra-class correlation coefficients for all items (0.78-0.89); median time to complete 7 mins, reducing to 5 mins at second visit.
The APCA African POS has sound psychometric properties, is well comprehended and brief to use. Application of this tool offers the opportunity to at last address the omissions of palliative care research in Africa.

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    • "The APCA African POS, which was used in the patient and family carer interviews, was validated in African settings and therefore served as a reliable tool to use for this study (Harding et al., 2010). A pilot study was conducted prior to the commencement of the actual study, to verify the data collection procedures and ensure the reliability and validity of the data collection instruments. "
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    ABSTRACT: Palliative care and pain management is one of the most important challenges faced by resource-limited settings in Africa. In South Africa, the need for palliative care has increased with the growing Human Immunodeficiency Virus (HIV) and Acquired Immune Deficiency Syndrome (AIDS) pandemic. A quantitative and descriptive study was conducted at five resource-limited hospice settings for the purpose of investigating the provision of palliative care and pain management, from the perspectives and experience of patients, family carers and palliative care workers. The validated African Palliative Care Association African Palliative Outcome Scale (APCA African POS) was used in structured interviews with 50 patients and 41 family carers, to measure pain experienced and quality of care received. Structured interviews were also conducted with 12 palliative care workers to identify challenges experienced by the hospice in the provision of palliative care and effective pain management. When using the APCA African POS to measure pain, 82% of the patients suffered moderate to very severe pain indicating that pain management was neither adequate nor appropriate. Family carers being worried about the patient correlated with the level of pain experienced by patients. Key challenges to effective provision of palliative care included lack of access to appropriate analgesics, adequately trained health professionals in effective pain management and palliative care and limited human and physical resources. Recommendations offered to overcome these challenges are essential and require action by the management of these facilities
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    • "The African Palliative Care Association African Palliative Outcome Scale (APCA African POS) was used to measure the three-day period prevalence and associated burden of multidimensional problems. This tool was developed across eight sub-Saharan African countries [24] and validated among 682 patients and 437 caregivers [25]. The seven patient-oriented items address pain, symptoms, worry, sharing feelings, feeling life is worthwhile, feeling at peace, and help and advice to plan for the future. "
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    ABSTRACT: Background Despite the high mortality rates of HIV and cancer in sub-Saharan Africa, there are few outcome tools and no comparative data across conditions. This study aimed to measure multidimensional wellbeing among advanced HIV and/or cancer patients in three African countries, and determine the relationship between two validated outcome measures. Methods Cross-sectional self-reported data from palliative care populations in Kenya, Uganda and South Africa using FACIT-G+Pal and POS measures. Results Among 461 participants across all countries, subscale “social and family wellbeing” had highest (best) score. Significant country effect showed lower (worse) scores for Uganda on 3 FACIT G subscales: Physical, Social + family, and functional. In multiple regression, country and functional status accounted for 21% variance in FACIT-Pal. Worsening functional status was associated with poorer POS score. Kenyans had worse POS score, followed by Uganda and South Africa. Matrix of correlational coefficients revealed moderate correlation between the POS and FACIT-Pal core scale (0.60), the FACIT-G and POS (0.64), and FACIT-G + Pal with POS (0.66). Conclusions The data reveal best status for family and social wellbeing, which may reflect the sample being from less individualistic societies. The tools appear to measure different constructs of wellbeing in palliative care, and reveal different levels of wellbeing between countries. Those with poorest physical function require greatest palliative and supportive care, and this does not appear to differ according to diagnosis.
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    • "A total of 29 studies (29 of 31; 93.5%) [10-19,21-23,25-40] described the number of patients submitted to the test-retest analysis. Of those, the median (P25-P75) number of patients included was 60 (32–119). "
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