Type 1 diabetes and menopause, what women would like to know: a public and patient involvement exercise

Abstract

Introduction: Managing the impacts of the menopause can be a tedious experience for many women, and when coupled with diabetes, the challenges are multiplied. Literature searches confirm a dearth of information and support to help women with these dual conditions.

Methods: A Patient Public Involvement exercise involving an online survey disseminated electronically via social media amongst the Type 1 diabetes online community. It comprised five closed questions and one open question to elicit priority needs. The survey was supplemented with a subsequent Twitter chat. The paper conforms to the guidance for reporting of patient and public involvement in health and social care research (GRIPP).

Results: Of the 184 women who completed the survey across the United Kingdom, most were aged between 40 and 59 years (n = 167, 90.8%). Although 137 (72.8%) women reported that menopause had impacted on their diabetes, only a minority (n = 50, 27.2%) indicated that it had ever been discussed with them. The overarching theme from the open question was of an overall Lack of awareness about the impacts of menopause, with the following subthemes: 1) Need for information about menopause, 2) An additional burden, 3) Symptoms of diabetes or menopause? and 4) Communication – expectations of care.

Conclusions: Women need information, support and guidance during this phase of life. This oft overlooked aspect of care is engendering frustration and suboptimal diabetes management and will be a topic raised with increasing frequency in general practice and diabetes specialities. The management of diabetes and menopause deserves more attention across the diabetes community.