杂志文章%@ 2561-326X %I JMIR出版物%V 5% N 卡塔尔世界杯8强波胆分析2% P 18732 %T退行性脊髓型颈椎病患者报道的主要结局主题:焦点小组研究%A Khan,Danyal Zaman %A Fitzpatrick,Siobhan Mairead %A Hilton,Bryn %A McNair,Angus GK %A Sarewitz,Ellen %A Davies,Benjamin Marshall %A Kotter,Mark RN %A， %+学术神经外科，剑桥大学，167号箱，剑桥生物医学校区，Addenbrooke医院，英国剑桥，44 122 333 6946，mrk25@cam.ac.uk %K颈椎病%K脊髓病%K颈椎病%K椎管狭窄%K椎间盘突出%K后纵韧带骨化%K定性%K专题分析%K核心结果集%K共识%K德尔福%K患者观点%D 2021 %7 3.2.2021 %9原论文%J JMIR Form Res %G英文%X背景:退行性脊髓型颈椎病(DCM)发生在颈椎的关节炎改变导致脊髓压迫和进行性损伤时。它很常见，而且可能会致残。患有DCM的人是慢性疾病生活质量评分最低的人群之一(简表健康调查-36项目[SF-36])，尽管DCM影响的驱动因素还不完全清楚。DCM研究面临着许多挑战，包括研究数据的异构报告。AO脊柱研究目标和退行性脊髓型颈椎病通用数据元素(RECODE-DCM)项目是一个国际共识过程，旨在通过形成核心结果集(COS)来提高研究效率。COS开发过程的一个关键部分是将结果组织成代表疾病关键方面的领域。为了促进这一点，我们试图定性地探讨患者报告的DCM结果对研究参与者的背景和影响。目的:本研究的目的是对DCM中患者报告的结果进行定性探讨，以提高对患者视角的理解，并协助将结果组织为共识过程的领域。 Methods: Focus group sessions were hosted in collaboration with Myelopathy.org, a charity and support group for people with DCM. A 40-minute session was audiorecorded and transcribed verbatim. Two authors familiarized themselves with the data and then performed data coding independently. Codes were grouped into themes and a thematic analysis was performed guided by Braun and Clarke’s 6-phase approach. The themes were subsequently reviewed with an independent stakeholder with DCM, assisting in the process of capturing the true context and importance of themes. Results: Five people with DCM (3 men and 2 women) participated in the focus group session. The median age was 53 years, and the median score on the modified Japanese Orthopaedic Association scale was 11 (interquartile range 9.5-11.5), indicating the participants had moderate to severe DCM. A total of 54 codes were reviewed and grouped into 10 potential themes that captured the impact of the disability on people with DCM: acceptance of symptoms, anticipatory anxiety, coping mechanisms/resilience, feelings of helplessness, financial consequences, lack of recognition, mental health impact, loss of life control, social reclusiveness and isolation, and social stigma. Conclusions: This qualitative analysis of the perspectives of people with DCM has highlighted a number of prevailing themes currently unmeasured in clinical research or care. The determinants of low quality of life in DCM are currently unknown, and these findings provide a novel and so far, unique perspective. Continued inclusion of online communities and use of targeted digital software will be important in establishing a consensus-based COS for patients with DCM that is inclusive of all relevant stakeholders including people with DCM. %M 33533719 %R 10.2196/18732 %U https://formative.www.mybigtv.com/2021/2/e18732 %U https://doi.org/10.2196/18732 %U http://www.ncbi.nlm.nih.gov/pubmed/33533719