BT37 Can patients with psoriasis and eczema support their self-management by being involved in care decision making?

Abstract

Abstract Eczema and psoriasis are often associated with psychological and metabolic comorbidities. They usually require long-term medical care. Currently, no intervention is available to regularly assess such patients’ needs and comorbidities and support their involvement in decision making and self-management. The objective of this study was to explore the acceptability and potential of a self-developed questionnaire (study tool) in addressing the needs, comorbidities and feedback of patients with psoriasis and eczema, to support their involvement in decision making and self-management of their chronic conditions. A mixed-methods study was conducted that included a postal survey on adult male and female patients with psoriasis and eczema. The study tool contained the Dermatology Life Quality Index and seven supplementary open-ended questions to capture patients’ views, feedback, comorbidities, coping status and needs. The survey was followed by semistructured face-to-face interviews with a sample of the patients who had participated in the survey. The final study involved sharing the research findings along with a prototype of the proposed online version of the study tool with a group of healthcare professionals. Of the 114 patients who participated in the postal survey, 108 (94.7%) expressed physical, metabolic and psychological comorbidities. Stress was identified as the dominant disease-triggering factor in 72 (63.2%) participants. Thirty-three (28.9%) participants reported that they could not cope with their chronic illness. Eighteen (15.8%) had anxiety, and 12 (10.5%) had depression and suicidal thoughts. Twenty-nine (25.4%) participants addressed their needs for support at home, and 16 (14.0%) of them asked for support at work. In the interviews, all the participants (22, 100%) welcomed the use of the study tool on a regular basis to support their needs and feedback. Nineteen (86%) of them preferred using an online version of the tool (portal system) as a convenient way of remote and interactive communication with the healthcare provider, particularly during the worsening of their skin condition. In the final study, the healthcare experts agreed that the proposed online version of the study tool (portal) would be a convenient platform for such patients to address their unmet needs, comorbidities and feedback. It can be designed to provide access to supportive services including links to patient information on skin diseases, local mental health services, patient forums and other relevant support groups and charities. In conclusion, the study tool has the potential to regularly engage and assess patients’ unmet needs, comorbidities and feedback. All the interviewees welcomed regular use of the study tool. The use of an online version of the tool can have the potential to fill important gaps in patient self-management and in health service improvement.