Abstract
OBJECTIVES: Care for patients after stroke has been transformed over the last two decades. We explored one patient-centred outcome: the type and range of questions asked after stroke through a publically available helpline. We compared data from 1990 to 2013 to see whether the positive changes in stroke care are reflected in the types and quantity of inquiries from patients and their families. METHODS: All of the inquiries received by the UK Stroke Association helpline between 1 April 2013 and 31 March 2014 were collated and compared to the data collected and previously reported by Hanger and Mulley between May and September 1990. RESULTS: In 1990, the most common inquiry was for more information about stroke (22.5% (429/1908)). In 2013, the most common question remained the same, with 25.4% (2601/10,233) of all callers asking what is a stroke. Specific medical questions increased from 4.2% (80/1908) in 1990 to 10.5% (1074/10,233) in 2013. Queries about support with home care reduced from 9.4% (180/1908) in 1990 to 2.6% (257/10,233) in 2013. Questions about recovery and rehabilitation were frequent in both 1990 (11.1% (212/1908)) and 2013 (13.2% (1353/10,233)). CONCLUSION: The transformation in stroke services has not been reflected in this patient-level outcome in the United Kingdom. Many stroke survivors and their families still struggle with understanding their condition and treatment options.