PDF(Pubmed)
Abstract：
BACKGROUND: Patients with uncommon genetic conditions often face limited in-person resources for social and informational support. Hypermobile Ehlers-Danlos syndrome (hEDS) is a rare or underdiagnosed hereditary disorder of the connective tissue, and like those with similar diseases, patients with hEDS have begun to turn to social media in search of care and community. The aims of our study were to understand the usage habits and perceptions of utility of social media use for patients with hEDS in order to formulate suggestions for how clinicians may best engage these and similar patient populations about this topic.
METHODS: We conducted both a quantitative survey and qualitative interviews with patients who had received a robust clinical diagnosis of hEDS.
RESULTS: Twenty-four individuals completed the initial survey, and a subset of 21 of those participants completed an interview. Through thematic analysis, we identified four primary themes related to their experience with social media: (1) befriending others with their disease, (2) seeking and vetting information, (3) the risks and downsides of social media use, and (4) the desire for clinicians to discuss this topic with them.
CONCLUSIONS: We conclude by proposing five suggestions that emerge empirically from our data. These proposals will help clinicians engage their patients regarding social media use in order to promote its potential benefits and circumvent its potential harms as they pursue support for their hereditary condition.
METHODS: We conducted both a quantitative survey and qualitative interviews with patients who had received a robust clinical diagnosis of hEDS.
RESULTS: Twenty-four individuals completed the initial survey, and a subset of 21 of those participants completed an interview. Through thematic analysis, we identified four primary themes related to their experience with social media: (1) befriending others with their disease, (2) seeking and vetting information, (3) the risks and downsides of social media use, and (4) the desire for clinicians to discuss this topic with them.
CONCLUSIONS: We conclude by proposing five suggestions that emerge empirically from our data. These proposals will help clinicians engage their patients regarding social media use in order to promote its potential benefits and circumvent its potential harms as they pursue support for their hereditary condition.
摘要：
背景：患有罕见遗传疾病的患者通常面临有限的社会和信息支持个人资源。HypermobileEhlers-Danlos综合征（hEDS）是一种罕见或未被诊断的结缔组织遗传性疾病，像那些患有类似疾病的人一样，hEDS患者已经开始转向社交媒体寻求护理和社区。我们研究的目的是了解社交媒体对hEDS患者的使用习惯和实用性的看法，以便为临床医生如何最好地吸引这些和类似的患者人群参与该主题制定建议。
方法：我们对临床诊断为hEDS的患者进行了定量调查和定性访谈。
结果：24个人完成了初步调查，其中21名参与者的子集完成了面试。通过专题分析，我们确定了与他们在社交媒体上的经历相关的四个主要主题：（1）与他人的疾病成为朋友，(2)寻求和审查信息，（3）社交媒体使用的风险和弊端，（4）希望临床医生与他们讨论这个话题。
结论：我们最后提出了从我们的数据中得出的5条建议。这些建议将帮助临床医生让他们的患者参与社交媒体的使用，以促进其潜在的好处，并规避其潜在的危害，因为他们寻求对其遗传性疾病的支持。
方法：我们对临床诊断为hEDS的患者进行了定量调查和定性访谈。
结果：24个人完成了初步调查，其中21名参与者的子集完成了面试。通过专题分析，我们确定了与他们在社交媒体上的经历相关的四个主要主题：（1）与他人的疾病成为朋友，(2)寻求和审查信息，（3）社交媒体使用的风险和弊端，（4）希望临床医生与他们讨论这个话题。
结论：我们最后提出了从我们的数据中得出的5条建议。这些建议将帮助临床医生让他们的患者参与社交媒体的使用，以促进其潜在的好处，并规避其潜在的危害，因为他们寻求对其遗传性疾病的支持。
