Healthcare and research priorities for women with polycystic ovary syndrome in the UK National Health Service: A modified Delphi method

IF 3 3区医学 Q2 ENDOCRINOLOGY & METABOLISM

Clinical Endocrinology Pub Date : 2024-02-29 DOI:10.1111/cen.15038

Bassel H. Al Wattar, Jhia Jiat Teh, Sophie Clarke, Ali Abbara, Rachel Morman, Alison Wilcox, Vikram Talaulikar

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引用次数: 0

Abstract

Objective

Polycystic ovary syndrome (PCOS) is a chronic lifelong condition affecting up to 20% of women worldwide. There is limited input from affected women to guide the provision of healthcare services and future research needs. Our objective was to scope the healthcare and research priorities of women with PCOS in the United Kingdom.

Design

A three-staged modified Delphi method, consisting of two questionnaires and a consensus meeting involving lay representatives and healthcare professionals.

Patients and Measurements

Lay patient representatives of women with PCOS. Participants were asked to identify and rank healthcare and research priorities for their importance.

Results

Six hundred and twenty-four lay participants took part in our Delphi method. Over 98% were diagnosed with PCOS (614/624, 98.4%). More than half experienced difficulties to receive a PCOS diagnosis (375/624, 60%), and the majority found it difficult to access specialised PCOS health services in the NHS (594/624, 95%). The top two healthcare priorities included better education for health professionals on the diagnosis and management of PCOS (238/273, 87.1%) and the need to set up specialist PCOS services (234/273, 85.7%). The top two research priorities focused on identifying better treatments for irregular periods (233/273, 85.3%) followed by better tests for early PCOS diagnosis (230/273, 84.2%).

Conclusions

We identified 13 healthcare and 14 research priorities that reflect the current health needs of women with PCOS in the United Kingdom. Adopting these priorities in future healthcare and research planning will help to optimise the health of women with PCOS and increase patient satisfaction.

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英国国民健康服务中针对多囊卵巢综合征妇女的医疗保健和研究重点：改良德尔菲法。

目的：多囊卵巢综合征（PCOS多囊卵巢综合症（PCOS）是一种慢性终身疾病，影响着全球多达 20% 的妇女。受影响妇女提供的信息有限，无法指导医疗服务的提供和未来的研究需求。我们的目标是确定英国多囊卵巢综合症妇女的医疗保健和研究重点：设计：三阶段改良德尔菲法，包括两份调查问卷和一次由非专业代表和医护人员参加的共识会议：患者和测量：多囊卵巢综合征妇女的非专业患者代表。要求参与者确定医疗保健和研究优先事项的重要性并对其进行排序：结果：624 名非专业参与者参与了德尔菲法。超过 98% 的参与者被诊断患有多囊卵巢综合症（614/624，98.4%）。半数以上的人在接受多囊卵巢综合症诊断时遇到困难（375/624，60%），大多数人认为很难获得国家医疗服务体系中的多囊卵巢综合症专业医疗服务（594/624，95%）。排在前两位的医疗优先事项包括：对医疗专业人员进行更好的多囊卵巢综合症诊断和管理教育（238/273，87.1%），以及需要设立专门的多囊卵巢综合症服务（234/273，85.7%）。排在前两位的研究重点是确定更好的月经不调治疗方法（233/273，85.3%），其次是更好的多囊卵巢综合症早期诊断测试（230/273，84.2%）：我们确定了 13 项医疗保健优先事项和 14 项研究优先事项，它们反映了英国多囊卵巢综合症妇女目前的健康需求。在未来的医疗保健和研究规划中采用这些优先事项将有助于优化多囊卵巢综合症妇女的健康并提高患者满意度。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Clinical Endocrinology 医学-内分泌学与代谢

CiteScore

6.40

自引率

3.10%

发文量

192

审稿时长

1 months

期刊介绍： Clinical Endocrinology publishes papers and reviews which focus on the clinical aspects of endocrinology, including the clinical application of molecular endocrinology. It does not publish papers relating directly to diabetes care and clinical management. It features reviews, original papers, commentaries, correspondence and Clinical Questions. Clinical Endocrinology is essential reading not only for those engaged in endocrinological research but also for those involved primarily in clinical practice.