Qualitative study exploring which research outcomes best reflect women’s experiences of heavy menstrual bleeding: stakeholder involvement in development of a core outcome set
Identificadores
URI: https://hdl.handle.net/10481/84820Metadatos
Mostrar el registro completo del ítemEditorial
Bmj Publishing Group
Fecha
2023-07Referencia bibliográfica
Cooper NAM, Yorke S, Tan A, et al. 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 2023;13:e063637. [doi:10.1136/ bmjopen-2022-063637]
Patrocinador
Academy of Medical Sciences Starter Grant for Clinical Lecturers which was awarded to NAMC; NAMC is an academic clinical lecturer funded by the National Institute for Health Research; Programme Grant given to the University of Granada by the Spanish Ministry of EducationResumen
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.