Experiences of Blogging About Visible and Long-term Skin Conditions:Interpretative Phenomenological Analysis

Background: Skin conditions can detract from people's quality of life, much like conditions such as cancer, chronic pain, and depression. Visible skin conditions can lead to risk of stigmatization. It is acknowledged that there is a lack of available psychosocial support for people living with chronic skin conditions. One way in which individuals with long-term conditions are self-managing and providing peer support is through blogging and exchanging information on the web. To date, no research has specifically investigated how individuals with skin conditions experience the use blogging for self-management. Objective: This study sought to investigate the experiences of individuals with visible, long-term skin conditions when blogging about their conditions. Methods: A systematic blog search and a short survey were used for recruitment. A total of 4 participants took part in email interviews, which were analyzed using interpretative phenomenological analysis (IPA). Skin conditions included alopecia, psoriasis, and hirsutism. The content of these individuals' blogs was also analyzed using a qualitative template method derived from the IPA analysis. Results: The interviews and accounts revealed a clear sense of uncertainty about the course of the bloggers' skin conditions. This appeared to be associated with feelings of distress and isolation, searching for treatments, and ultimately a sense of defeat. The data revealed that blogging provided a space where this sense of defeat was managed and challenged. Posting on the web facilitated connection with others and enabled support networks to be established that assisted in challenging the feelings of isolation experienced. The data demonstrate the important role that blogging played for these participants in developing a sense of acceptance of their condition. Conclusions: Blogging may provide a way for individuals to self-manage distress associated with visible skin conditions. It may provide similar benefits to those known to be derived from emotional disclosure that occurs during writing, with an added peer support dimension. Blogging has occurred naturalistically on web-based forums, and this study demonstrates how this form of interaction may warrant adaptation for use with web-based psychosocial interventions for people living with skin conditions. This study had a limited sample of 4 bloggers; therefore, further exploration would be needed to consider the utility of this approach

Survey and online discussion groups to develop a patient-rated outcome measure on acceptability of treatment response in vitiligo

BackgroundVitiligo is a chronic depigmenting skin disorder which affects around 0.5-1% of the world’s population. The outcome measures used most commonly in trials to judge treatment success focus on repigmentation. Patient-reported outcome measures of treatment success are rarely used, although recommendations have been made for their inclusion in vitiligo trials. This study aimed to evaluate the face validity of a new patient-reported outcome measure of treatment response, for use in future trials and clinical practice. MethodAn online survey to gather initial views on what constitutes treatment success for people with vitiligo or their parents/carers, followed by online discussion groups with patients to reach consensus on what constitutes treatment success for individuals with vitiligo, and how this can be assessed in the context of trials. Participants were recruited from an existing database of vitiligo patients and through posts on the social network sites Facebook and Twitter. ResultsA total of 202 survey responses were received, of which 37 were excluded and 165 analysed. Three main themes emerged as important in assessing treatment response: a) the match between vitiligo and normal skin (how well it blends in); b) how noticeable the vitiligo is and c) a reduction in the size of the white patches. The majority of respondents said they would consider 80% or more repigmentation to be a worthwhile treatment response after 9 months of treatment. Three online discussion groups involving 12 participants led to consensus that treatment success is best measured by asking patients how noticeable their vitiligo is after treatment. This was judged to be best answered using a 5-point Likert scale, on which a score of 4 or 5 represents treatment success. ConclusionsThis study represents the first step in developing a patient reported measure of treatment success in vitiligo trials. Further work is now needed to assess its construct validity and responsiveness to change.<br/