Cooper, Natalie Ann MacKinnon;
Yorke, Sarah;
Tan, Alex;
Khan, Khalid Saeed;
Rivas, Carol;
(2023)
Qualitative study exploring which research outcomes best reflect women's experiences of heavy menstrual bleeding: stakeholder involvement in development of a core outcome set.
BMJ Open
, 13
(7)
, Article e063637. 10.1136/bmjopen-2022-063637.
Preview |
PDF
e063637.full.pdf - Published Version Download (509kB) | Preview |
Abstract
OBJECTIVE: This work contributed to the development of a core outcome set (COS) for heavy menstrual bleeding (HMB). The objective was to determine which research outcomes best reflect how HMB affects women's lives and to identify additional research outcomes, not previously reported. It was important to explore and record participants' reasoning for prioritising outcomes and use this information to reinforce the patients' voice during later phases of the COS development. DESIGN: Patient workshop discussions and telephone interviews. SETTING: East London teaching hospital. PARTICIPANTS: Inclusion criteria were that participants must be over 18 years old, that either they or their partner had a history of HMB and that they had a good understanding of written and spoken English. RESULTS: 41 participants were recruited for the study. 8 women and 1 man completed the study. The eight female participants were representative of the different underlying causes and treatments for HMB. Participants ranged in age from their early 20s to their 60s and represented a range of ethnic groups. The five main themes that were identified as being important to patients were: 'restriction', 'relationships and isolation', 'emotions and self-perception', 'pain' and 'perceptions of treatment'. We identified eight coding nodes that did not correspond with our list of previously reported outcomes in studies of HMB. These nodes were consolidated and became five new outcomes for potential inclusion in the COS. CONCLUSIONS: HMB stops women living their lives as they would wish. It affects their relationships, education, careers, reproductive wishes, social life and mental health. This is a condition of girls and women in the prime of their lives, but for many, the constant threat of a heavy period starting means that they sacrifice that freedom. The societal and economic costs of women being incapacitated every month has an effect on everyone. TRIAL REGISTRATION: The COS study is registered with the COMET (Core Outcome Measures in Effectiveness Trials) Initiative-project reference number 789.
| Type: | Article |
|---|---|
| Title: | Qualitative study exploring which research outcomes best reflect women's experiences of heavy menstrual bleeding: stakeholder involvement in development of a core outcome set |
| Location: | England |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1136/bmjopen-2022-063637 |
| Publisher version: | https://doi.org/10.1136/bmjopen-2022-063637 |
| Language: | English |
| Additional information: | This work is licensed under a Creative Commons Attribution 4.0 International License. The images or other third-party material in this article are included in the Creative Commons license, unless indicated otherwise in the credit line; if the material is not included under the Creative Commons license, users will need to obtain permission from the license holder to reproduce the material. To view a copy of this license, visit http://creativecommons.org/licenses/by/4.0/ |
| Keywords: | GYNAECOLOGY, QUALITATIVE RESEARCH, STATISTICS & RESEARCH METHODS, Female, Humans, Adolescent, Menorrhagia, Qualitative Research, Outcome Assessment, Health Care, London |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Education UCL > Provost and Vice Provost Offices > School of Education > UCL Institute of Education UCL > Provost and Vice Provost Offices > School of Education > UCL Institute of Education > IOE - Social Research Institute |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10174151 |
Archive Staff Only
 |
View Item |
