Conceptualizing and prioritizing clinical trial outcomes from the perspectives of people with Parkinson’s disease versus health care professionals: a concept mapping study

Background

Focusing clinical investigations on outcomes that are meaningful from an end-user perspective is central in clinical research, particularly in chronic disorders such as Parkinson’s disease (PD). However, little is known about how end-users such as people with PD (PwPD) and health care professionals (HCPs) view and prioritize therapeutic outcomes.

Purpose

To compare the perspectives of PwPD and HCPs regarding prioritized areas for outcome measurement in clinical PD trials.

Methods

Concept mapping was used to identify prioritized outcomes (statements) through focus groups (n = 27; 12 PwPD, 12 HCPs, three researchers), statement sorting and importance rating (n = 38; 19 PwPD, 19 HCPs), followed by quantitative (multidimensional scaling, cluster analysis, procrustes analysis) and qualitative analysis.

Results

Sorting of 99 statements by PwPD and HCPs yielded 2D maps (PwPD/HCPs stress values, 0.31/0.21) with eight clusters per group. The correlation between raw sorting data of PwPD and HCPs was 0.80, and there was a significant concordance (m ₁₂ = 0.53; P < 0.001; i.e., r = 0.68) between the spatial arrangements in their respective maps. Qualitatively, the maps from the two groups represented partially different perspectives. There were no significant differences between PwPD and HCP item importance ratings.

Conclusion

Although similarities dominated, there were differences in how the relationships between items were perceived by the two groups, emanating from different perspectives, i.e., the clinical biomedical (“disease”) versus the lived experience (“illness”). This study illustrates the clinical importance of attention to the perspective of PwPD; taking this into account is likely to provide evidence from clinical investigations that are meaningful and interpretable for end-users.     

The effects of the financial crisis and austerity measures on the Spanish health care system: A qualitative analysis of health professionals’ perceptions in the region of Valencia

The recent financial crisis has seen severe austerity measures imposed on the Spanish health care system. However, the impacts are not yet well documented. We describe the findings from a qualitative study that explored health care professionals’ perception of the effects of austerity measures in the Spanish Autonomous Community of Valencia. A total of 21 semi-structured interviews were conducted with health professionals, recorded and fully transcribed. We coded all interviews using an inductive approach, drawing on techniques used in the constant comparative method. Health professionals reported increases in mental health conditions and malnutrition linked to a loss of income from employment and cuts to social support services. Health care professionals perceived that the quality of health care had become worse and health outcomes had deteriorated as a result of austerity measures. Interviewees also suggested that increased copayments meant that a growing number of patients could not afford necessary medication. While a few supported reforms and policies, such as the increase in copayments for pharmaceuticals, most opposed the privatization of health care facilities, and the newly introduced Royal Decree-law 16/2012, particularly the exclusion of non-residents from the health care system. The prevailing perception is that austerity measures are having negative effects on the quality of the health care system and population health. In light of this evidence there is an urgent need to evaluate the austerity measures recently introduced and to consider alternatives such as the derogation of the Royal Decree-law 16/2012.     

Drawing them in: professional perspectives on the complexities of engaging ‘culturally diverse’ young people with sexual and reproductive health promotion and care in Sydney,Australia

Abstract

Young people from minority ethnic, migrant and refugee backgrounds are widely recognised as being under-served by mainstream sexual and reproductive healthcare in developed economy nations. This paper documents the views of professionals in Australia on the complexities of, and best practice approaches to, engaging members of this group with sexual and reproductive health promotion and care. Semi-structured interviews were conducted with 23 purposively selected key informants (health service providers, policymakers, academics and community advocates). Interviews were transcribed verbatim and coded in NVivo10 using interpretive thematic analysis. Principles of ‘cultural competence’ were employed to structure the interpretation of findings. Five key themes reveal pivotal aspects of how professionals work in, and make sense of, this complex field. These may be summarised as: (1) appreciating the complexities of cultural diversity; (2) recognising structural barriers and disincentives to engagement; (3) normalising sexual health; (4) balancing ‘youth-friendly’ and ‘culturally-competent’ priorities; and (5) going beyond simple translation. As migration to Australia continues to diversify the population, an integrated, national approach to the design and delivery of sexual and reproductive health promotion and care would be of value, along with training and support for those involved. Implications may have resonance for other countries similarly engaged in facilitating the successful settlement of migrants and refugees.