患者与医疗服务提供者对库欣氏病生活的不同看法。

IF 3.3 2区 医学 Q2 ENDOCRINOLOGY & METABOLISM
Pituitary Pub Date : 2024-04-01 Epub Date: 2024-02-05 DOI:10.1007/s11102-024-01381-4
Amanda Halstrom, I-Hsin Lin, Andrew Lin, Marc Cohen, Viviane Tabar, Eliza B Geer
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引用次数: 0

摘要

背景:库欣病(CD)是一种罕见的慢性疾病,患者在生活和接受适当治疗方面都面临挑战。即使治疗成功,许多患者仍会出现持续的症状,生活质量(QoL)也会受到影响。患者与医疗服务提供者(HCPs)之间不同的观点和期望也可能会损害患者的健康:研究患者和医护人员对 CD 患者生活的不同看法,并比较护理目标和未满足的需求:设计:纪念斯隆-凯特琳垂体中心为垂体患者和医疗保健人员举办了一年一度的垂体研讨会。通过在 2020 年和 2022 年研讨会上发放的匿名会前调查,患者和 HCP 回答了与他们自身或对患者在 CD 患者生活中的希望感、选择感和孤独感的看法有关的问题:在两次教育活动的 655 名参与者中,有 46 名 CD 患者和 116 名 HCP。两组参与者的中位年龄均为 51 岁。78.3%的患者为女性,53.0%的保健医生为女性:结果:与保健医生相比,更多的患者表示他们在治疗中没有选择(21.7% 对 0.9%,P 结论:CD 患者经历了长期的症状和功能障碍:CD 患者的症状长期存在,生活质量受损,部分原因可能是他们认为缺乏有效的治疗方案,对病情改善不抱希望。交流经验和护理目标可改善 CD 患者的长期疗效。
本文章由计算机程序翻译,如有差异,请以英文原文为准。

Different patient versus provider perspectives on living with Cushing's disease.

Different patient versus provider perspectives on living with Cushing's disease.

Context: Patients with Cushing's disease (CD) face challenges living with and receiving appropriate care for this rare, chronic condition. Even with successful treatment, many patients experience ongoing symptoms and impaired quality of life (QoL). Different perspectives and expectations between patients and healthcare providers (HCPs) may also impair well-being.

Objective: To examine differences in perspectives on living with CD between patients and HCPs, and to compare care goals and unmet needs.

Design: Memorial Sloan Kettering Pituitary Center established an annual pituitary symposium for pituitary patients and HCPs. Through anonymous pre-program surveys distributed at the 2020 and 2022 symposia, patients and HCPs answered questions related to their own sense, or perception of their patients' sense, of hope, choice, and loneliness in the context of living with CD.

Participants: From 655 participants over two educational events, 46 patients with CD and 116 HCPs were included. Median age of both groups was 51 years. 78.3% of the patients were female vs. 53.0% of the HCPs.

Results: More patients than HCPs reported they had no choices in their treatment (21.7% vs. 0.9%, P < 0.001). More patients reported feeling alone living with CD than HCPs' perception of such (60.9% vs. 45.5%, P = 0.08). The most common personal care goal concern for patients was 'QoL/mental health,' vs. 'medical therapies/tumor control' for HCPs. The most common CD unmet need reported by patients was 'education/awareness' vs. 'medical therapies/tumor control' for HCPs.

Conclusions: CD patients experience long term symptoms and impaired QoL which may in part be due to a perception of lack of effective treatment options and little hope for improvement. Communicating experiences and care goals may improve long term outcomes for CD patients.

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来源期刊
Pituitary
Pituitary 医学-内分泌学与代谢
CiteScore
7.10
自引率
7.90%
发文量
90
审稿时长
6 months
期刊介绍: Pituitary is an international publication devoted to basic and clinical aspects of the pituitary gland. It is designed to publish original, high quality research in both basic and pituitary function as well as clinical pituitary disease. The journal considers: Biology of Pituitary Tumors Mechanisms of Pituitary Hormone Secretion Regulation of Pituitary Function Prospective Clinical Studies of Pituitary Disease Critical Basic and Clinical Reviews Pituitary is directed at basic investigators, physiologists, clinical adult and pediatric endocrinologists, neurosurgeons and reproductive endocrinologists interested in the broad field of the pituitary and its disorders. The Editorial Board has been drawn from international experts in basic and clinical endocrinology. The journal offers a rapid turnaround time for review of manuscripts, and the high standard of the journal is maintained by a selective peer-review process which aims to publish only the highest quality manuscripts. Pituitary will foster the publication of creative scholarship as it pertains to the pituitary and will provide a forum for basic scientists and clinicians to publish their high quality pituitary-related work.
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