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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Available from: Julia Downing, Oct 06, 2015
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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.
    Health and Quality of Life Outcomes 05/2014; 12(1):80. DOI:10.1186/1477-7525-12-80 · 2.12 Impact Factor
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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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    ABSTRACT: Patient-reported outcome validation needs to achieve validity and reliability standards. Among reliability analysis parameters, test-retest reliability is an important psychometric property. Retested patients must be in a clinically stable condition. This is particularly problematic in palliative care (PC) settings because advanced cancer patients are prone to a faster rate of clinical deterioration. The aim of this study was to evaluate the methods by which multi-symptom and health-related qualities of life (HRQoL) based on patient-reported outcomes (PROs) have been validated in oncological PC settings with regards to test-retest reliability. A systematic search of PubMed (1966 to June 2013), EMBASE (1980 to June 2013), PsychInfo (1806 to June 2013), CINAHL (1980 to June 2013), and SCIELO (1998 to June 2013), and specific PRO databases was performed. Studies were included if they described a set of validation studies. Studies were included if they described a set of validation studies for an instrument developed to measure multi-symptom or multidimensional HRQoL in advanced cancer patients under PC. The COSMIN checklist was used to rate the methodological quality of the study designs. We identified 89 validation studies from 746 potentially relevant articles. From those 89 articles, 31 measured test-retest reliability and were included in this review. Upon critical analysis of the overall quality of the criteria used to determine the test-retest reliability, 6 (19.4%), 17 (54.8%), and 8 (25.8%) of these articles were rated as good, fair, or poor, respectively, and no article was classified as excellent. Multi-symptom instruments were retested over a shortened interval when compared to the HRQoL instruments (median values 24 hours and 168 hours, respectively; p = 0.001). Validation studies that included objective confirmation of clinical stability in their design yielded better results for the test-retest analysis with regard to both pain and global HRQoL scores (p < 0.05). The quality of the statistical analysis and its description were of great concern. Test-retest reliability has been infrequently and poorly evaluated. The confirmation of clinical stability was an important factor in our analysis, and we suggest that special attention be focused on clinical stability when designing a PRO validation study that includes advanced cancer patients under PC.
    BMC Medical Research Methodology 01/2014; 14(1):8. DOI:10.1186/1471-2288-14-8 · 2.27 Impact Factor
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    • "Third, the fact that pain, whether physical or psychosocial in nature, was not always reported to healthcare staff, means routine assessment embedded in clinical practice is required as standard. Proactive questioning to ascertain patient needs may be facilitated by communication skills training for staff as well as use of the APCA African Palliative Outcome Scale in clinical practice [58]. "
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    ABSTRACT: Despite the huge burden of HIV in sub-Saharan Africa, there is little evidence of the multidimensional needs of patients with HIV infection to inform the person-centred care across physical, psychological, social and spiritual domains stipulated in policy guidance. We aimed to describe the problems experienced by people with HIV in Kenya and Uganda and the management of these problems by HIV outpatient services. Local researchers conducted in depth qualitative interviews with HIV patients, caregivers and service staff at 12 HIV outpatient facilities (6 in Kenya, 6 in Uganda). Interview data were analysed thematically. 189 people were interviewed (83 patients, 47 caregivers, 59 staff). The impact of pain and symptoms and their causes (HIV, comorbidities, treatment side-effects) were described. Staff reported that effective pain relief was not always available, particularly in Kenya. Psychosocial distress (isolation, loneliness, worry) was exacerbated by stigma and poverty, and detrimentally affected adherence. Illness led to despair and hopelessness. Provision of counselling was reported, but spiritual support appeared to be less common. Neither pain nor psychosocial problems were routinely reported to service staff. Collaboration with local hospices and income-generation activities for patients were highlighted as useful. The findings demonstrate the multiple and interrelated problems associated with living with HIV and how psychosocial and spiritual distress can contribute to 'total pain' in this population. In line with the palliative care approach, HIV care requires holistic care and assessment that take into account psychological, socioeconomic and spiritual distress alongside improved access to pain-relieving drugs, including opioids.
    BMC Palliative Care 10/2013; 12(1):35. DOI:10.1186/1472-684X-12-35 · 1.78 Impact Factor
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