Validation of the EQ-5D-5L and psychosocial bolt-ons in a large cohort of people living with multiple sclerosis in Australia.

BACKGROUND: Multiple sclerosis (MS) is an inflammatory, neurodegenerative disease of the central nervous system which results in disability over time and reduced quality of life. To increase the sensitivity of the EQ-5D-5L for psychosocial health, four bolt-on items from the AQoL-8D were used to create the nine-item EQ-5D-5L-Psychosocial. We aimed to externally validate the EQ-5D-5L-Psychosocial in a large cohort of people with MS (pwMS) and explore the discriminatory power of the new instrument with EQ-5D-5L/AQoL-8D. METHODS: A large representative sample from the Australian MS Longitudinal Study completed the AQoL-8D and EQ-5D-5L (including EQ VAS) and both instruments health state utilities (HSUs) were scored using Australian tariffs. Sociodemographic/clinical data were also collected. External validity of EQ-5D-5L-Psychosocial scoring algorithm was assessed with mean absolute errors (MAE) and Spearman's correlation coefficient. Discriminatory sensitivity was assessed with an examination of ceiling/floor effects, and disability severity classifications. RESULTS: Among 1683 participants (mean age: 58.6 years; 80% female), over half (55%) had moderate or severe disability. MAE (0.063) and the distribution of the prediction error were similar to the original development study. Mean (± standard deviation) HSUs were EQ-5D-5L: 0.58 ± 0.32, EQ-5D-5L-Psychosocial 0.62 ± 0.29, and AQoL-8D: 0.63 ± 0.20. N = 157 (10%) scored perfect health (i.e. HSU = 1.0) on the EQ-5D-5L, but reported a mean HSU of 0.90 on the alternative instruments. The Sleep bolt-on dimension was particularly important for pwMS. CONCLUSIONS: The EQ-5D-5L-Psychosocial is more sensitive than the EQ-5D-5L in pwMS whose HSUs approach those reflecting full health. When respondent burden is taken into account, the EQ-5D-5L-Psychosocial is preferential to the AQoL-8D. We suggest a larger confirmatory study comparing all prevalent multi-attribute utility instruments for pwMS.

Community participation in rural primary health care: intervention or approach?

Community participation is considered important in primary health care development and there is some evidence to suggest it results in positive health outcomes. Through a process of synthesising existing evidence for the effectiveness of community participation in terms of health outcomes we identified several conceptual areas of confusion. This paper builds on earlier work to disentangle the conceptual gaps in this area, and clarify our common understanding of community participation. We conducted a research synthesis of 689 empirical studies in the literature linking rural community participation and health outcomes. The 37 final papers were grouped and analysed according to: contextual factors; the conceptual approach to community participation (using a modification of an existing typology); community participation process; level of evidence; and outcomes reported. Although there is some evidence of benefit of community participation in terms of health outcomes, we found only a few studies demonstrating higher levels of evidence. However, it is clear that absence of evidence of effect is not necessarily the same as absence of an effect. We focus on areas of debate and lack of clarity in the literature. Improving our understanding of community participation and its role in rural primary health care service design and delivery will increase the likelihood of genuine community-health sector partnerships and more responsive health services for rural communities.