Co-design of youth appropriate services for young people with rheumatic fever/rheumatic heart disease in Counties Manukau District.

AIM: To co-design a rheumatic fever service model which enables young people with acute rheumatic fever/rheumatic heart disease (ARF/RHD) and their families to access the health and wellbeing services they need. METHOD: Co-design, a collaborative and participatory approach, was used to gather experiences and ideas from 21 consumers and 30 health professionals. Thematic analysis was undertaken. RESULTS: Maori and Pacific patients and their whanau/aiga identified the importance of whanau/aiga support and involvement throughout their ARF/RHD journey. They described that the way care was delivered was often frustrating, fragmented and lacked effective communication. Participants expressed the need for information to improve their understanding of ARF/RHD. Health professionals identified the need for better continuity of care and felt that they were currently working siloed from other professionals with little visibility of other roles or opportunity for collaboration. The ideas for improvement were grouped into themes and resulted in development and prototyping of peer support groups, patient and staff education resources, clinical dashboard and pathway development, and an enhanced model of care for delivery to patients receiving penicillin prophylaxis. CONCLUSION: The co-design process enabled consumers and staff of ARF/RHD services to share experiences, identify ideas for improvement, co-design prototypes and test initiatives to better support the needs of those delivering and receiving ARF/RHD services.

Adequate adherence to benzathine penicillin secondary prophylaxis following the diagnosis of rheumatic heart disease by echocardiographic screening.

AIMS: The primary aim of this study was to determine adherence to benzathine penicillin (BPG) for individuals diagnosed with rheumatic heart disease (RHD) by echocardiographic screening between 2007-2012. METHODS: BPG records were obtained for 57 patients, median age 12 at time of diagnosis. A 'days at risk' analysis was undertaken. Annual adherence was calculated for each individual. A comparison with the Wellington region's Rheumatic Fever 2013 adherence data was undertaken. RESULTS: Adherence to BPG was good with a median follow-up time of 5.8 years. Days at risk analysis: median 0% at year one and 2.7% at year five. The median adherence for the entire cohort over the entire follow-up period was 92%, range 0-100%. There was no difference of proportions of late doses compared to the Wellington region. Median adherence was higher for register based (94%, n=48) compared to primary health care penicillin delivery (37%, n=7), p<0.005. During follow-up, 30% of the cohort moved between regions or overseas. CONCLUSIONS: Good adherence rates are achievable for secondary prophylaxis when RHD is diagnosed by echocardiographic screening. This likely reflects the benefit of rheumatic fever registers and community nursing services rather than the pathway of the diagnosis for RHD.