Health Literacy in a scar treatment portal website: Can Personal and Public Involvement help in detecting the benefits and pitfalls?

Abstract

Introduction: Pathological Scarring (PS) as a result of surgical intervention, burn injury or trauma remains a real concern and clinical challenge, causing physical, psychological and socio-economical burden.
 Over 100 million people worldwide suffer from PS. Many of these people search for solutions, but except from unvalidated internet sources, relevant information is lacking. To guide these people in their search we developed an informative website from an interprofessional point of view and with the perspective of Personal and Public Involvement (PPI). This website provides evidence based information on a wide variety of treatment options. Patients can perform a search for suitable treatments via scar characteristics or scar types.
 To be successful in this journey, we decided to involve patients in the development of this website. The aim of our study is to investigate whether this website meets the relevant health literate criteria and can be divided into 3 questions:
 1.Does this website increase the patients’ knowledge of scar therapies?
 2.Do patient and caregiver find the same most suitable treatments after performing a search as above mentioned? Is the caregiver aware of the patients’ health care demand?
 3.Is the content of the website accessible to people with various levels of health literacy?
 Method: Patients will complete a pre-use online/paper questionnaire to assess their awareness about possible therapeutic solutions to improve their scars. After visiting the website and performing the above mentioned search, patients will receive a post-use online/paper questionnaire to assess changes in information knowledge together with a health literacy patient survey and patient feedback form to evaluate the feasibility of the search and health literate language used. Patients and their respective caregivers will both perform the same search to investigate the differences in their outcome. Patients and caregivers will start the search from their respective points of view and the aim is to detect whether they end up with the same therapeutic solutions.
 
 Results: The aim is to recruit 40 patients of different gender identities, age and digital literacy together with their caregivers. At the ICIC2023 conference, we will present the preliminary results of this study.
 Discussion/Conclusion: Previous research in other health domains reported that medical consultations were usually too short to elaborate a meaningful representation of a patients’ health problem. When consulting an informative website with understandable content, on the contrary, people could take all the time they needed to navigate in the website and to confront their situation with the information provided. By providing them this modality, they could improve their self-comprehension which could set appropriate expectations and avoid misunderstandings to achieve realistic outcomes. Our study aims to confirm these findings in the domain of PS by listing the benefits and pitfalls of such an informative website and detect the factors influencing the patients motivation to make use of such a website.