Teasdale Emma, Muller Ingrid, Abdullah Sani Amirah, Thomas Kim S, Stuart Beth, Santer Miriam
Primary Care and Population Sciences, Faculty of Medicine, University of Southampton, Southampton, UK.
Academic Unit of Psychology, Faculty of Social and Human Sciences, University of Southampton, Southampton, UK.
BMJ Open. 2018 Jan 11;8(1):e018652. doi: 10.1136/bmjopen-2017-018652.
Vitiligo is a relatively common autoimmune condition causing loss of skin pigment. Around 1 in 100 people in the UK develop vitiligo. It can have a significant impact on quality of life for many of those affected. How people access information and help for vitiligo may influence how they manage such impact. We aimed to explore people's views and experiences of seeking health information and help for vitiligo.
Qualitative analysis of free-text responses to four open-ended questions in an online survey.
Online survey conducted in the UK between February and March 2016.
A survey link was emailed to 675 members of The Vitiligo Society, a UK-based charity providing information and support for people with vitiligo. One hundred and sixty-one members responded to the survey (24%).
Many participants wrote extensive free text, often reporting frustration with help-seeking. They perceived general practitioners (GP) as their primary source of advice but felt that GPs had low awareness of available treatments. Where GPs appeared sympathetic or signposted towards further information this was appreciated, even where people felt their GP had not seemed knowledgeable. Many felt that vitiligo was dismissed by health professionals including GPs and dermatologists as 'cosmetic', which upset those who experienced substantial impact. Participants expressed concerns about the credibility of online information on vitiligo and the need for reliable, detailed information, as well as a desire for support with managing its psychosocial impact.
Information and help-seeking needs of people with vitiligo currently appear to be poorly met, even among members of The Vitiligo Society, who are likely to have received more information than others. People with vitiligo would welcome greater health professional awareness of available vitiligo treatments. Acknowledging the psychosocial impacts of vitiligo and signposting towards credible information are also welcomed.
白癜风是一种相对常见的自身免疫性疾病，会导致皮肤色素脱失。在英国，约每100人中就有1人患白癜风。它会对许多患者的生活质量产生重大影响。人们获取白癜风相关信息和帮助的方式可能会影响他们应对这种影响的方式。我们旨在探究人们寻求白癜风健康信息和帮助的观点及经历。
对在线调查中四个开放式问题的自由文本回复进行定性分析。
2016年2月至3月在英国进行的在线调查。
向白癜风协会的675名成员发送了调查链接，该协会是一家为白癜风患者提供信息和支持的英国慈善机构。161名成员回复了调查（24%）。
许多参与者撰写了详尽的自由文本，常常报告寻求帮助时的沮丧情绪。他们将全科医生视为主要的建议来源，但觉得全科医生对现有治疗方法的认知度较低。当全科医生表现出同情或提供进一步信息的指引时，即便人们觉得他们的全科医生知识并不渊博，这也会受到感激。许多人觉得包括全科医生和皮肤科医生在内的医疗专业人员将白癜风视为“美容问题”而不予重视，这让那些受到严重影响的人感到沮丧。参与者对白癜风在线信息的可信度表示担忧，需要可靠、详细的信息，同时希望在应对其心理社会影响方面获得支持。
目前，白癜风患者的信息和寻求帮助的需求似乎未得到充分满足，即便在白癜风协会成员中也是如此，他们可能比其他人获得了更多信息。白癜风患者欢迎医疗专业人员提高对现有白癜风治疗方法的认知度。承认白癜风的心理社会影响并提供可靠信息的指引也受到欢迎。
