Improving gout education from patients’ perspectives: A focus group study of Māori and New Zealand European people with gout

Abstract

Gout is a debilitating form of arthritis characterised by hot, painful, swollen joints. Historically, gout was considered a disease of affluence; however, it is now known to result from an excess of uric acid in the body, a condition known as hyperuricaemia. Successful gout treatment requires adherence to both pharmacological and nonpharmacological treatment recommendations. However, a critical factor to successful gout treatment is the quality of the education that people receive in primary care settings about their gout and its management. Education experiences and gaps in education must be examined as gout prevalence is increasing and over-represented by indigenous populations in New Zealand. The current study utilised qualitative research methodology to explore gout-education experiences of 69 men and women with gout who engage solely with primary healthcare services for gout management. Findings from thematic analysis of data obtained through 9 focus groups aimed to answer three research questions: (1) Source of education: Where do people with gout obtain their understanding about their illness and its management? (2) Content of education: What do people with gout understand about their disease? (3) Cultural differences: Do gout educational experiences vary between New Zealand European (NZE) and Māori? Results revealed that gout knowledge is obtained from multiple sources including healthcare professionals, educational pamphlets, family and friends, and from websites. However, there were significant gaps in gout aetiology and treatment knowledge. Cultural differences influenced education, with Māori participants placing more emphasis on learning through social communication of information. Findings suggest several gout-related policy changes including greater consistency and dissemination of key educational resources, more holistic approaches to education delivery, and a gout education strategy that culturally tailors resources. This includes translating educational resources into Te Reo Māori and establishing community meetings or action groups that involve the wider Māori community. Changes to education have the potential to increase treatment adherence, reduce incidence of chronic gouty arthritis, and most importantly, significantly reduce the negative impact of gout on individuals, their whanau, and the associated economic burden on the country.