Nutrients · 4 authors, 5 centres
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This cross-sectional survey of UK adult PKU patients and caregivers assessed experiences and satisfaction with adult PKU clinics. The central finding was that only half of respondents described their clinic experience as 'good', with notable concerns about appointment length, support, and the use of remote consultations.
This study presents findings from a survey conducted by the National Society for Phenylketonuria (NSPKU) to understand the experiences and expectations of adult PKU patients and caregivers regarding UK adult PKU clinics. The survey collected data on dietary treatment, clinic attendance, self-reported health, and opinions on remote consultations. The results indicate that only 50% of respondents rated their adult clinic experience as 'good'. Key concerns included short appointment times and a lack of perceived support. Regarding remote care, 70% of females and 50% of males preferred a mix of face-to-face and remote appointments, but significant concerns were raised about the lack of physical examinations and potential to miss clinical signs. The study identifies barriers to care such as clinic distance and cost, with around 19% of respondents not having attended a clinic for over two years. Implications suggest a need for more specialized dietitians, flexible clinic scheduling, and strategies to re-engage patients lost to follow-up.
