Background: Common chronic skin diseases such as eczema and psoriasis usually require long term medical care. They are often associated with psychological and metabolic comorbidities, which can impact on patient quality of life (QOL) and on the self-management of these diseases. Regular assessment of patient needs, comorbidities and feedback is a critical step in the development of decision-analytic models. Currently, no intervention is available to regularly assess such patients’ needs and comorbidities and support their involvement in the decision-making and self-management of their morbidity and comorbidities. The aim of this research is to involve the patients in decision making of their care and to support their self-management by the use of a paper questionnaire (study tool) at each consultation.
Objective: To explore the acceptability and potential of a self-developed paper questionnaire that constituted a study tool for addressing the needs, comorbidities, and feedback of patients with psoriasis and eczema and supporting their involvement in decision making and self-management of their chronic conditions.
Method: A mixed method study was conducted and included a postal survey on adult male and female patients with psoriasis and eczema, using the study tool, which is a paper questionnaire and contains the Dermatology Life Quality Index (DLQI) and seven supplementary open-ended questions to capture patients’ views, feedback, comorbidities, coping status and needs. The survey was followed by semi-structured face-to-face interviews with a sample of the patients who had participated in the survey. The aims of the interviews were two-fold: 1. to gain a deeper understanding of their experience of living with and managing their skin disease; and 2. to gather patient feedback on the service they received as well as their views on using the new study tool or any alternative intervention to address and support their self-management. The final study was a pilot which involved presenting a proposal of an online version of the study tool to a group of healthcare experts asking them to critically review the extent to which the online model responded to patients expressed needs.
Results: Of the 114 patients who participated in the postal survey 108 (94.7%) of them expressed physical, metabolic and psychological comorbidities. Stress was identified as the dominant disease-triggering factor in 72 (63%) participants. Thirty-three (28.9%) of participants reported that they could not cope with their chronic illness. Eighteen (15.7%) participants suffered from anxiety, and 12 (10.5%) had depression and suicidal thoughts. Twenty-nine (25%) participants addressed their needs for support at home, and 16 (14%) of them asked for support at work. In the patient feedback section, 21 (18.4%) and 9 (7.8%) participants rated the service they received from their general practitioner (GP) and dermatologist as poor, respectively. In the interviews, all the participants 22 (100%) welcomed the use of the study tool on a regular basis to address their needs, comorbidities and feedback. Nineteen (86.3%) of them suggested that they would prefer using an online version of the tool or patient 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 pilot study, the healthcare experts agreed that the proposed online version of the study tool could be a convenient platform for such patients to support their self-management. They discussed the potential importance of such a tool if it provided them with access to supportive services such as patient information on skin diseases and self-management, access to local mental health service and other relevant psoriasis and eczema patients’ support groups and charities.
Conclusion: This novel mixed method research identified knowledge gaps in managing patients with psoriasis and eczema. It provided a new tool that has the potential to regularly engage and assess patients’ unmet needs, comorbidities and feedback. The tool can involve patients in decision-making and offers them the autonomy to disclose heterogeneous needs that may support their self-management. All the interviewees welcomed regular use of the study tool and the majority of them suggested that they would prefer using an online version of the tool if it was available. Future research is needed to assess the impact of the study tool in filling important gaps in patient self-management and in health service improvement.