Treatment delay within the patient journey of people with Korsakoff's syndrome: A retrospective qualitative multiple-case study in the Netherlands

Treatment delay is the best explanation for the development of Korsakoff's syndrome. This study aimed to improve the patient pathway to reduce treatment delay and/or increase proper care on time for people with Korsakoff's syndrome by generating knowledge about the patient journey from the first moment that professional care was deemed necessary until the time of admission into a specialised residential facility for long-term care and treatment. This retrospective exploratory multiple-case study used an individual semi-structured interview approach in 14 cases, with a total of 56 respondents. Process mapping was used to understand the chronological patient journey and the multiple-case description was analysed by using the same question as used by the individual case studies: 'What risk factors do the respondents discuss that can explain treatment delay?'. The exploration of the data revealed three reoccurring cross-case risk factors to explain treatment delay or delay in receiving proper care on time. Our respondents discussed: the lack of knowledge of KS, the fragmentation of care/waiting lists and the lack of specialistic home care. We recommend the development of knowledge programmes about Korsakoff's syndrome for family carers, GP's, healthcare professionals in general hospitals and home care workers, which could play an essential role in reducing treatment delays for patients with KS. There is also a need to find ways to organise coordinated care for patients with KS. Further research into the role of Korsakoff case managers is recommended.