Supportive Care Needs of Young Adults With Endometriosis: An Open-Ended Online Survey and Exploration of Unmet Needs

IF 3 3区医学 Q2 HEALTH CARE SCIENCES & SERVICES

Health Expectations Pub Date : 2024-10-02 DOI:10.1111/hex.70045

Louis Taffs, Niamh Waters, Jennifer Marino, Charlene Rapsey, Michelle Peate, Jane E. Girling

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引用次数: 0

Abstract

Objective

The aim of this study is to identify and explore the unmet needs of adolescents and young adults living with endometriosis.

Design

An open-ended online survey was conducted, with questions derived from prior research looking at areas of unmet need in healthcare, career and work, financial, information, psychological, social and cultural domains.

Setting and Population

Self-selecting 18-25 year olds with surgically diagnosed endometriosis (self-reported) currently living in Australia were included as participants.

Methods

Invitation to participate in an open-ended online survey was shared through the social media of Australian endometriosis organisations and the Royal Women's Hospital, Melbourne. Surveys were analysed qualitatively through template analysis.

Main Outcome Measures

Recording of the unmet supportive care needs of this population was carried out.

Results

One hundred and thirty-one respondents fit the eligibility criteria of being aged 18–25 years (median age 23 years). Most were born in Australia (94%), university-educated (54%) and lived in a metropolitan setting (69%). There was a range of unmet needs that were presented across education, work, healthcare and relationships. Group-specific challenges were identified: doctors either over- or underemphasising future fertility; disrupted sexual and romantic life due to painful sex; managing pain in the classroom and workplace where periods are taboo; and being gender-queer in gynaecological medical spaces.

Conclusions

The increasingly young age at which patients are receiving an endometriosis diagnosis precipitates a shift in patient care. The treatment decisions that are being made must be reflective of the unique needs of the adolescents who carry the burden of the disease. Clinicians are advised to be aware of and discuss needs with their patients.

Patient or Public Contribution

The nine open-ended questions in this survey were developed from data from a preliminary series of interviews with endometriosis patients in a tertiary women's healthcare centre. In asking these data-informed questions to the online endometriosis community, patients across broader sociocultural demographics and disease states (including less symptomatic endometriosis) have provided a broader understanding of their supportive care needs.

查看原文本刊更多论文

年轻子宫内膜异位症患者的支持性护理需求：一项开放式在线调查和对未满足需求的探索。

研究目的本研究旨在确定和探讨患有子宫内膜异位症的青少年和年轻成年人未得到满足的需求：设计：开展一项开放式在线调查，调查问题源自先前的研究，涉及医疗保健、职业和工作、财务、信息、心理、社会和文化领域中未满足的需求：调查对象：自行选择目前居住在澳大利亚、经手术确诊患有子宫内膜异位症（自我报告）的 18-25 岁女性：方法：通过澳大利亚子宫内膜异位症组织和墨尔本皇家妇女医院的社交媒体，邀请参与者参与开放式在线调查。通过模板分析对调查进行定性分析：结果：131 名受访者符合要求：131 名受访者符合 18-25 岁（中位数为 23 岁）的资格标准。大多数受访者出生在澳大利亚（94%），受过大学教育（54%），居住在大都市（69%）。他们在教育、工作、医疗保健和人际关系等方面存在一系列未得到满足的需求。研究还发现了一些特定群体面临的挑战：医生过分强调或不太强调未来的生育能力；性生活和恋爱因疼痛而中断；在教室和工作场所处理疼痛，因为经期是禁忌；以及在妇科医疗场所成为性别同性恋者：诊断出子宫内膜异位症的患者年龄越来越小，这促使患者护理发生转变。所做的治疗决定必须反映出背负疾病负担的青少年的独特需求。建议临床医生了解患者的需求，并与患者进行讨论：本调查中的九个开放式问题是根据对一家三级妇女医疗保健中心的子宫内膜异位症患者进行的一系列初步访谈数据编制而成的。通过向在线子宫内膜异位症社区提出这些以数据为依据的问题，更广泛的社会文化人口和疾病状态（包括症状较轻的子宫内膜异位症）的患者对其支持性护理需求有了更广泛的了解。

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

Health Expectations 医学-公共卫生、环境卫生与职业卫生

CiteScore

5.20

自引率

9.40%

发文量

251

审稿时长

>12 weeks

期刊介绍： Health Expectations promotes critical thinking and informed debate about all aspects of patient and public involvement and engagement (PPIE) in health and social care, health policy and health services research including: • Person-centred care and quality improvement • Patients'' participation in decisions about disease prevention and management • Public perceptions of health services • Citizen involvement in health care policy making and priority-setting • Methods for monitoring and evaluating participation • Empowerment and consumerism • Patients'' role in safety and quality • Patient and public role in health services research • Co-production (researchers working with patients and the public) of research, health care and policy Health Expectations is a quarterly, peer-reviewed journal publishing original research, review articles and critical commentaries. It includes papers which clarify concepts, develop theories, and critically analyse and evaluate specific policies and practices. The Journal provides an inter-disciplinary and international forum in which researchers (including PPIE researchers) from a range of backgrounds and expertise can present their work to other researchers, policy-makers, health care professionals, managers, patients and consumer advocates.