Introduction Patient organisations play a key role in providing patient support, whilst facilitating patient-centred and participatory medicine. The Sleep Apnoea Trust Association (SATA) commissioned a patient review of their website. The objectives of this project were to improve communication between SATA, their members and other patients with Obstructive Sleep Apnoea (OSA), and to invite members’ critique of SATA’s website.
Methods A mixed-methods questionnaire of 15-items including Likert scales, multiple-choice, open-ended, and demographic questions was designed to assess members’ needs and preferences for healthcare communication. The web-based questionnaire was informed by patients, their families and clinicians, and included a structured evaluation of website accessibility, readability, and information quality. 1,318 SATA members were invited by email to participate anonymously. Descriptive demographic and quantitative, and thematic qualitative data are presented.
Results 351 (27%) of SATA members responded; 70% were male, 93% ≥45 years and 62% with severe pre-treatment OSA symptoms. 44% learned about SATA via their sleep clinic, 5% from GPs, and 32% via search-engines. Over 87% had visited the SATA website at least twice. Two-thirds were satisfied or very satisfied with the content, 31% were neutral and only 3% were dissatisfied. 49% ‘often’ found the information they sought, 43% ‘occasionally’, and 8% ‘rarely or never’. Areas highlighted for improvement included the dated and cluttered appearance, and difficulty navigating the site. Further information was requested re OSA research, equipment maintenance and reviews, DVLA guidelines, and other patients’ experiences.
Discussion Most SATA members became aware of the patient charity support only after visiting secondary care suggesting the need to create stronger links with the public and primary care. Once aware of SATA’s website, many patients made multiple visits gaining good quality information. Key data was obtained for phase II of this project, which is to increase accessibility and the interactive nature of the website.