Scoping Appropriate Quality of Life Dimensions for the Development of a Meaningful Quality of Life Tool for PCOS. The “HERAQoL-P”

Abstract

Background: Polycystic Ovary Syndrome (PCOS) is a common endocrine condition in women, with a range of symptoms related to problems with fertility, weight gain, mental health and sleep, and is not a stable condition over the life course. Women with PCOS have different experiences of Quality of Life (QoL) depending on their age, ethnicity, socio economic status, severity and phenotype. QoL is an important health outcome, yet measures include predefined items, that may be unimportant to individuals. Existing PCOS QoL measures may not capture the full physical, emotional, and social impact of PCOS, all of which need to be addressed within person-centred care in order to achieve the best possible health outcomes in both the short and long term. Aim: We aim to scope and understand priorities for quality of life (QoL) dimensions from women with PCOS throughout life, to provide a conceptual framework for the creation of a meaningful, scientifically validated quality of life tool in the future. Method: Based on the Schedule for the Evaluation of Individual Quality of Life (SEIQoL) questionnaire, we are surveying 200 women and interviewing 20-30 women diagnosed with PCOS about aspects of life important for their quality of life. Questions in the interview include the impact of this condition on physical, mental and emotional health, and understand whether PCOS affects women differently according to their profile of symptoms and background. Results: This work provides the basis for developing a new QoL tool, reflecting the diverse PCOS features with the greatest impact, enabling better evaluation of Patient Reported Outcomes. Conclusion: A high-quality QoL questionnaire could highlight women’s specific priorities, and then measure whether their healthcare addresses such priorities. We will then create the HERAQol-P, with extensive potential to have impact, in both research and clinical care, adding to the evidence base for PCOS.