TY -的盟Ashtari Sadaf AU -泰勒,亚当·丹尼尔PY - 2022 DA - 2022/8/25 TI -互联网知道的比我的医生:定性访谈的研究罕见疾病患者以及他们如何使用在线支持组乔- J地中海互联网Res SP - e39172六世- 24 - 8 KW -在线同伴支持组KW -遗传病KW -疼痛管理KW -恰当牵拉KW - EDS KW -慢性疼痛KW -卫生保健提供者KW - AB疼痛缓解技术背景:患有罕见疾病的患者可能会面临护理人员不熟悉他们病情所带来的挑战。罕见病患者的寿命可能与健康人相同，但他们的生活质量不同。患有慢性疼痛的患者一直在寻找减轻疼痛的方法。止痛药不是永久的解决方案。除了罕见病对患者和医疗保健提供者的医疗和非医疗成本外，还需要可持续的信息来源，以帮助缓解疼痛和改善生活质量，目标是减少医生就诊和住院人数。目的:本研究调查了遗传性疾病患者在管理自己的健康状况和寻找疾病相关信息方面面临的挑战，以及在线同伴支持小组对减轻疼痛和护理管理的影响。方法:在2021年7月至2021年12月期间通过Zoom进行采访。符合条件的参与者年龄为> - 18岁，有任何类型的伴有慢性疼痛的埃勒-丹洛斯综合征(EDS)的医学诊断，并且是任何支持小组的成员。参与者是通过埃勒斯-丹洛斯综合症协会网页上的研究和调查部分的公告招募的。 Interviews were analyzed using the framework approach. Data were systematically searched to identify patterns, analyze them, and identify themes. Interview audio files were transcribed and independently coded by two researchers (SA and AT). Through an iterative process, a final coding table was agreed upon by the researchers and used to thematically analyze the data. Results: We interviewed 30 participants (mean age 37.7, SD 15 years; n=28, 93% were women; n=23, 77% were residing in the United States). Thematic analysis revealed that participants (patients with EDS) were constantly in pain and most of them have not received accurate and timely diagnoses for many years. They expressed their challenges with health care providers regarding diagnosis and treatment, and complained about their providers’ lack of support and knowledge. Participants’ main sources of information were web-based searches, academic journals, The Ehlers-Danlos Syndrome Society web page, and online peer support groups on Facebook, Reddit, Twitter, and Instagram. Although pain killers, cannabis, and opioids are providing some pain relief, most patients (28/30, 93%) focused on nonmedical approaches, such as hot or ice packs, physical therapy, exercises, massage, mindfulness, and meditation. Conclusions: This study highlights the information gap between health care providers and patients with genetic disorders. Patients with EDS seek access to information from different web-based sources. To meet the needs of patients with genetic disorders, future interventions via web-based resources for improving the quality of care must be considered by health care professionals and government agencies. SN - 1438-8871 UR - //www.mybigtv.com/2022/8/e39172 UR - https://doi.org/10.2196/39172 UR - http://www.ncbi.nlm.nih.gov/pubmed/36006679 DO - 10.2196/39172 ID - info:doi/10.2196/39172 ER -