Premature Ovarian Insufficiency: From Systemic Harm to Quality of Life Measurement
Tracks
Ballroom 1
| Tuesday, September 1, 2026 |
| 11:45 AM - 12:05 PM |
| JW Grand Ballroom |
Overview
Belinda Pisana, Bond University
Three Key Learnings
1. POI is a distinct, high‑risk condition with impacts across the lifespan
Delegates will understand how POI may disrupt education, work, identity, relationships and trust in healthcare, and why adolescent‑onset and midlife represent critical, often overlooked drivers of risk.
2. Why a POI‑specific quality of life tool is needed
Delegates will learn why a condition‑specific QOL tool is required to capture the multidimensional impacts and how integrating meaningful lived‑experience input strengthened relevance.
3. Healthcare system factors shape adjustment
Delegates will recognise how systemic influences can drive risk and why routine mental health and suicide‑risk screening should be embedded in care.
Speaker
Ms. Belinda Pisana
Phd Candidate
Bond University
Premature Ovarian Insufficiency: From Systemic Harm to Quality of Life Measurement
Abstract
The presentation aims to:
1. Introduce the diagnostic criteria and specific physical and mental health risks associated with Premature Ovarian Insufficiency.
2. Describe the clinical and lived‑experience factors that motivated development of a condition‑specific quality of life tool; and
3. Summarise key qualitative themes, item generation, Delphi consensus on priority domains, and planned psychometric validation.
POI is an under‑recognised cause of early oestrogen deficiency, diagnosed when the ovaries stop functioning properly before the age of 40. The condition is associated with elevated risks to brain, bone and heart health.
The first phase of this research entailed a review of the existing literature examining POI and quality of life, and a qualitative study involving 191 women from Australia, the United Kingdom and the United States. Thematic analysis of open‑ended survey responses explored the experience of living with POI. Women described debilitating physical symptoms and mental health impacts, including anxiety, depression and suicidal ideation, which were shaped by contextual influences such as healthcare access and quality, diagnostic delays, provider knowledge gaps, sociocultural narratives, life stage and developmental timing.
These findings highlighted the need for a condition‑specific tool that can capture the breadth of POI‑related impacts, support targeted care and evaluate the effectiveness of interventions. Existing research and women’s accounts were used to inform item generation for a new quality of life measure, currently being validated with participants from five English‑speaking countries.
Validation commenced with a modified Delphi study involving an expert panel of healthcare providers and women with lived experience, with pilot testing and further psychometric analysis to follow.
The researcher is committed to inclusion and respect and recognises not all people diagnosed with POI identify as women. Here, the terms “woman” and “she/her” are used to reflect existing POI research language and are intended to include all individuals with POI.
1. Introduce the diagnostic criteria and specific physical and mental health risks associated with Premature Ovarian Insufficiency.
2. Describe the clinical and lived‑experience factors that motivated development of a condition‑specific quality of life tool; and
3. Summarise key qualitative themes, item generation, Delphi consensus on priority domains, and planned psychometric validation.
POI is an under‑recognised cause of early oestrogen deficiency, diagnosed when the ovaries stop functioning properly before the age of 40. The condition is associated with elevated risks to brain, bone and heart health.
The first phase of this research entailed a review of the existing literature examining POI and quality of life, and a qualitative study involving 191 women from Australia, the United Kingdom and the United States. Thematic analysis of open‑ended survey responses explored the experience of living with POI. Women described debilitating physical symptoms and mental health impacts, including anxiety, depression and suicidal ideation, which were shaped by contextual influences such as healthcare access and quality, diagnostic delays, provider knowledge gaps, sociocultural narratives, life stage and developmental timing.
These findings highlighted the need for a condition‑specific tool that can capture the breadth of POI‑related impacts, support targeted care and evaluate the effectiveness of interventions. Existing research and women’s accounts were used to inform item generation for a new quality of life measure, currently being validated with participants from five English‑speaking countries.
Validation commenced with a modified Delphi study involving an expert panel of healthcare providers and women with lived experience, with pilot testing and further psychometric analysis to follow.
The researcher is committed to inclusion and respect and recognises not all people diagnosed with POI identify as women. Here, the terms “woman” and “she/her” are used to reflect existing POI research language and are intended to include all individuals with POI.
Biography
Belinda is a Clinical and Health Psychologist with over 30 years’ clinical experience supporting people with complex health conditions and trauma‑related distress. Her PhD research involves development of a condition specific QOL tool for Premature Ovarian Insufficiency. Belinda presented a poster at the 2025 AMS Conference on women's lived experiences of POI and was invited to provide evidence to the Lived Experience Panel at the Australian Senate inquiry into menopause and perimenopause. Her work, grounded in deep collaboration with women with POI, focuses on informing and improving care through making invisible health impacts and the structures that influence them visible.
