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双相情感障碍患者的生活挑战:一项关于对医疗保健和研究影响的定性研究

The challenges of living with bipolar disorder: a qualitative study of the implications for health care and research.

作者信息

Maassen Eva F, Regeer Barbara J, Regeer Eline J, Bunders Joske F G, Kupka Ralph W

机构信息

Athena Institute, Faculty of Earth and Life Sciences, VU University Amsterdam, Boelelaan 1085, 1081HV, Amsterdam, Netherlands.

Altrecht Institute for Mental Health Care, Nieuwe Houtenseweg 12, 3524 SH, Utrecht, Netherlands.

出版信息

Int J Bipolar Disord. 2018 Nov 6;6(1):23. doi: 10.1186/s40345-018-0131-y.

Abstract

BACKGROUND

In mental health care, clinical practice is often based on the best available research evidence. However, research findings are difficult to apply to clinical practice, resulting in an implementation gap. To bridge the gap between research and clinical practice, patients' perspectives should be used in health care and research. This study aimed to understand the challenges people with bipolar disorder (BD) experience and examine what these challenges imply for health care and research needs.

METHODS

Two qualitative studies were used, one to formulate research needs and another to formulate healthcare needs. In both studies focus group discussions were conducted with patients to explore their challenges in living with BD and associated needs, focusing on the themes diagnosis, treatment and recovery.

RESULTS

Patients' needs are clustered in 'disorder-specific' and 'generic' needs. Specific needs concern preventing late or incorrect diagnosis, support in search for individualized treatment and supporting clinical, functional, social and personal recovery. Generic needs concern health professionals, communication and the healthcare system.

CONCLUSION

Patients with BD address disorder-specific and generic healthcare and research needs. This indicates that disorder-specific treatment guidelines address only in part the needs of patients in everyday clinical practice.

摘要

背景

在精神卫生保健领域,临床实践通常基于现有的最佳研究证据。然而,研究结果难以应用于临床实践,从而导致了实施差距。为弥合研究与临床实践之间的差距,应在卫生保健和研究中纳入患者的观点。本研究旨在了解双相情感障碍(BD)患者所经历的挑战,并探讨这些挑战对卫生保健和研究需求意味着什么。

方法

采用了两项定性研究,一项用于确定研究需求,另一项用于确定卫生保健需求。在这两项研究中,均与患者进行了焦点小组讨论,以探讨他们在患有双相情感障碍时面临的挑战以及相关需求,重点关注诊断、治疗和康复等主题。

结果

患者的需求可分为“特定疾病”需求和“一般”需求。特定需求包括预防诊断延迟或错误、寻求个性化治疗的支持以及支持临床、功能、社会和个人康复。一般需求涉及卫生专业人员、沟通和卫生保健系统。

结论

双相情感障碍患者提出了特定疾病和一般的卫生保健及研究需求。这表明特定疾病的治疗指南仅部分满足了日常临床实践中患者的需求。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/affd/6218397/85586dbd8b00/40345_2018_131_Fig1_HTML.jpg

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