Giving a diagnosis of Premature Ovarian Insufficiency: The Importance of Good Communication. Names of Co-authors

Objective: To explore the significance of a diagnosis of Premature Ovarian Insufficiency on patient experiences with the condition. Design: A qualitative study using semi-structured interviews and thematic analysis. Setting: Participants were recruited from across the UK and interviewed remotely using Microsoft Teams. Population: Sixteen women aged 18 and above with a confirmed diagnosis of POI. Methods: Participants took part in in-depth interviews exploring their experiences of living with POI, including receiving a POI diagnosis. Main Outcome Methods: Interviews were recorded, transcribed, and analysed thematically. Results: Three key themes were identified: (1) Delivery of information about diagnosis by healthcare professionals (2) Participants reactions to a diagnosis of POI (3) POI framed as a fertility issue only. Participants reported considerable distress when diagnoses were delivered abruptly, digitally, or without appropriate support. Conversely, face-to-face, empathetic communication was described as validating and empowering. A consistent concern was the narrow clinical framing of POI as a fertility issue, with insufficient attention paid to long-term health risks, HRT, and emotional wellbeing. Conclusion: The way in which POI is communicated has a significant and lasting impact on women’s experiences and outcomes. A compassionate, holistic, and person-centred approach to diagnosis is essential. Healthcare professionals must embrace updated international guidelines, prioritise multidisciplinary care, and address existing disparities in access and support. Full Title Giving a diagnosis of Premature Ovarian Insufficiency: The Importance of Good Communication. Names of Co-authors Kate Pleace, RN, MSc, PhD Researcher Centre for Reproduction Research, 0.23 Edith Murphy House, De Montfort University, Leicester, LE1 9BH. 01162506576. [email protected] University of Essex, Wivenhoe Park, Colchester, CO4 3SQ. 01206873333. [email protected] Dr Caroline Law Centre for Reproduction Research, 0.23 Edith Murphy House, De Montfort University, Leicester, LE1 9BH. 01162506576. [email protected] Professor Cathy Herbrand Centre for Reproduction Research, 0.23 Edith Murphy House, De Montfort University, Leicester, LE1 9BH. 01162506576. [email protected] Professor Nicky Hudson Centre for Reproduction Research, 0.23 Edith Murphy House, De Montfort University, Leicester, LE1 9BH. 01162506576. [email protected] Corresponding Author Kate Pleace Centre for Reproduction Research, 0.23 Edith Murphy House, De Montfort University, Leicester, LE1 9BH. 01162506576. University of Essex, Wivenhoe Park, Colchester, CO4 3SQ. 01206873333. Shortened Running Title Giving a diagnosis of Premature Ovarian Insufficiency.

Objective: To explore the significance of a diagnosis of Premature Ovarian Insufficiency on patient experiences with the condition. Design: A qualitative study using semi-structured interviews and thematic analysis. Setting: Participants were recruited from across the UK and interviewed remotely using Microsoft Teams. Population: Sixteen women aged 18 and above with a confirmed diagnosis of POI.

Participants took part in in-depth interviews exploring their experiences of living with POI, including receiving a POI diagnosis. Main Outcome Methods: Interviews were recorded, transcribed, and analysed thematically.

Three key themes were identified: (1) Delivery of information about diagnosis by healthcare professionals (2) Participants reactions to a diagnosis of POI (3) POI framed as a fertility issue only. Participants reported considerable distress when diagnoses were delivered abruptly, digitally, or without appropriate support. Conversely, face-to-face, empathetic communication was described as validating and empowering. A consistent concern was the narrow clinical framing of POI as a fertility issue, with insufficient attention paid to long-term health risks, HRT, and emotional wellbeing.

The way in which POI is communicated has a significant and lasting impact on women’s experiences and outcomes. A compassionate, holistic, and person-centred approach to diagnosis is essential. Healthcare professionals must embrace updated international guidelines, prioritise multidisciplinary care, and address existing disparities in access and support. Funding: No funding was received for completion of this article.

Premature ovarian insufficiency, diagnosis, communication, emotional wellbeing, fertility, counselling, patient experience, reproductive health, counselling. Giving a diagnosis of Premature Ovarian Insufficiency: The Importance of Good Communication. Kate Pleace, Caroline Law, Cathy Herbrand, Nicky Hudson Funding No funding was received for the research study or completion of the article.

Premature ovarian insufficiency (POI) is a condition characterised by the loss of normal ovarian function before the age of 40 (1). Unlike menopause, which typically occurs around the age of 50, POI can develop as early as the teenage years or in a woman’s twenties or thirties, presenting significant physical and emotional challenges. The condition is defined by the presence of irregular or absent menstrual cycles for at least four months, along with elevated levels of follicle-stimulating hormone (FSH), and oestrogen deficiency (2). The prevalence of POI varies across populations but is estimated to affect approximately 3% of women under the age of 40 (3). Most cases occur spontaneously, with the exact aetiology being unknown (4) POI can result from genetic disorders, autoimmune diseases, infections, metabolic conditions, surgery or medical interventions such as chemotherapy or radiation therapy. The health implications of POI extend beyond reproductive concerns, and overall women with POI have a shortened life expectancy (5). Oestrogen plays a critical role in various physiological processes, and its fluctuation and deficiency can lead to a range of complications (6) Women with POI are at increased risk of osteoporosis due to decreased bone mineral density, and additionally oestrogen deficiency is associated with cardiovascular disease, with research suggesting that women with POI have a higher risk of heart disease compared to those who experience menopause at a typical age(7). Cognitive health may also be impacted, with some studies indicating a potential link between POI and an increased risk of neurological dysfunction. POI can have profound psychological and emotional consequences (8) and many women experience grief and distress related to infertility. The condition is also associated with an increased prevalence of anxiety, depression, low self-esteem and overall life satisfaction (9). The importance of a timely and compassionate diagnosis has been demonstrated in a number of other areas of health care such as endometriosis (10) PCOS (11) and urological conditions (12) with a persistent gap reported to exist between doctors’ and patients’ understandings of living with these conditions. There is limited research on how women experience the communication of a POI diagnosis by healthcare professionals (13). This article presents timely insights from empirical research, highlighting the critical role effective communication in delivering such as diagnosis. These findings align closely with the recently updated 2024 ESHRE guidelines on POI which advocate for early, accurate diagnosis, comprehensive patient education and multidisciplinary care (14).

Study Design This study employed a qualitative design to explore women’s lived experiences of POI, which included receiving a diagnosis of the condition. Qualitative approaches prioritise depth over breadth (unlike quantitative research) and focus on gaining deep insights into participants’ experiences, meanings, and perspectives (15). In-depth interviews, a common method in qualitative research, generate extensive, nuanced data that require substantial time and effort to analyse (16). Sample and Data Collection Sixteen women aged 18 and over with a confirmed diagnosis of POI were recruited for the study: see Table 1 for further information about participants. A small sample size is appropriate for qualitative research as the goal is to gain depth of understanding rather than breadth and allows the unfolding of a new and rich understanding of the data (17). Informed consent was obtained and semi-structured interviews were selected as the flexibility of this method allows for both the exploration of complex topics and also enables the researcher to explore participants’ thoughts, feelings and beliefs in depth (18) whilst also allowing for participants to raise topics the researcher may not have anticipated and so allows for new insights. A semi-structured interview guide was used to explore participants’ experiences, with additional probing questions asked when appropriate to encourage further depth and reflection. Ethical approval was obtained De Montfort University Ethics Committee HLSREF 545624 and all interviews were conducted online using Microsoft Teams. Interviews lasted between 60 and 90 minutes, and were digitally recorded using a Dictaphone, and then later transcribed using Microsoft 365. Data Analysis From the full data set, data pertaining specifically to a diagnosis of POI were extracted and then analysed using thematic analysis (19). Initial coding was conducted to identify aspects of the data of analytic interest. Themes were developed and then refined, reviewed, and names finalised to reflect their relevance and significance in relation to the research questions. Three themes surrounding communication of a diagnosis of POI are presented in this paper: 1) Communication of the diagnosis by healthcare professionals, 2) Participants reactions to a diagnosis of POI, and 3) POI framed as a fertility issue only. Communication of the diagnosis by healthcare professionals Most participants described receiving a diagnosis of POI as a distressing experience, which was often compounded by impersonal or poor communication by healthcare professionals. Information was delivered in a variety of ways including in person, over the phone or online, and was frequently delivered in a manner that was abrupt, lacking empathy, or insufficiently explained. Some of these modes of communication failed to account for the weight of what was being disclosed, not only a diagnosis but a significant and often unexpected loss: “Diagnosis was one of the worst things that has happened to me. She didn’t even call it POI.” (P8)“The very first diagnosis, it was awful, I just blocked it out” (P5)“I was failed, no one sat down and explained the importance of HRT and possible long term health implications for POI at my diagnosis.” (P7) These quotes highlight how the way a POI diagnosis is delivered can deeply shape the emotional experience and reveal a clear lack of communication about the condition and its long-term health implications, often leaving patients feeling neglected and uniformed. Several participants described receiving their diagnosis through impersonal channels such as over the phone, through printed results or via healthcare apps, without adequate clinical support: “I was given printed results by a non-clinician with no appointment.” (P14)“I logged into my NHS app and looked at the blood results and there was a comment saying POI, no further action. That was how I found out that I had POI.” (P2) These quotes illustrate how some individuals received a diagnosis of POI through impersonal or indirect means without adequate support or explanation. Face-to-face consultations were often seen as more compassionate and appropriate, allowing space for dialogue and emotional support. Whereas telephone communication was felt to be impersonal and associated with insufficient information: “The doctor told me over the phone and was so cold about it.” (P2)“My diagnosis was over the telephone; I was so confused that a neighbour who was a GP came round with her textbooks and sat down with me to explain the diagnosis.” (P12) A lack of structured support, compassion and follow-up care following diagnosis was also highlighted: “When I cried, I was sent right back to the waiting room – and where do you go from there?” (P2) “It felt odd and dismissive.” (P4) “The softer side wasn’t there.” (P8) This highlights how communication of a POI diagnosis can feel emotionally dismissive and lacking in compassion, leaving patients unsupported and isolated. In contrast, the few participants in the study who had received a positive and personalised, face-to-face diagnosis describe these encounters as pivotal in helping them feel acknowledged and validated following a diagnosis of POI. “I saw the GP in person, the GP was lovely and explained it all in detail” (P14) “I was quite lucky compared to other women, as my experience was positive, the clinician was kind, patient and answered all my questions” (P12)“The doctor literally sat in front of me and said I don’t know anything, so we will look into this together” (P14) Participants reactions to a diagnosis of POI The experience of POI was consistently described as one that deeply affected participants identity, self-perception, and emotional stability. Participants expressed a range of emotional reactions following a diagnosis of POI which included feelings of shock, confusion, grief, and a profound sense of loss. For many participants, the moment of diagnosis was described not just as a medical event, but as a life-altering event and a turning point. Many described feeling ”broken”, ”hopeless”, or “older than their age”: “I left feeling broken, confused and in shock.” (P10) “I felt a complete failure as a woman, failure as a wife, I lost all sensuality.” (P17) Participants spoke of a sudden and unwelcome shift into a new life stage that they were not prepared for, experiencing symptoms of menopause while still in their teens, twenties or thirties. This created a profound disconnection between their physical experiences and their expected life trajectory with many women feeling older than they were and an incongruence felt between a woman’s chronological age and her biological age. “I felt that somehow I was old and stopped being a fully functioning woman.” (P13) “I was going to be this old woman.” (P13) Unlike menopause occurring at the expected stage of life, which is considered a natural transition rather than a medical condition, a diagnosis of POI places women in an unexpected and often disorienting position. This discord between physical experience and chronological age often left participants struggling to reconcile how they felt, and what their diagnosis represented. Such disruptions extend beyond reproductive concerns, touching deeply on perceptions of femininity, vitality, and life trajectory. “Why can’t my body do what it is supposed to do, when our society says you must have children” (P10)“I’ve got no place; my body is useless” (P1) These quotes illustrate the profound distress caused by a diagnosis of POI, particularly the grief and loss associated with an unanticipated inability to have children. For many women, this loss extends beyond fertility itself, affecting their identity, life plans and overall sense of well-being. Some participants described a sense of disconnection from their previous identity prior to diagnosis and biographical disruption: “A line in the sand of before my diagnosis and after my diagnosis, I feel like two different people.” (P3) These experiences often negatively impacted self-esteem, body image, and personal relationships, underscoring the need for emotional and psychological support both during and post-diagnosis. POI framed as a fertility issue only Many participants felt that healthcare professionals tended to focus mainly on the fertility implications in discussions following a diagnosis of POI, with limited attention paid to other health and emotional consequences of the condition. The reduction of women’s identities to their reproductive potential during diagnosis was experienced as dehumanising and dismissive. Participants expressed frustration that consultations focused almost exclusively on reproductive potential, often at the expense of other broader health concerns: “There was never a conversation about treatment for symptoms, the focus was more about how I will have a family.” (P8)“It was only about fertility; we didn’t talk about anything else” (P4) “It’s not just the end of periods, it’s not just that you can’t have kids.” (P3) For some women in the study, the impact of POI on their reproductive potential was profound, and this was a significant implication of the diagnosis for them. “My path feels like it has been dictated by the fact that I couldn’t have children” (P4) However, for other women this was less important, and even amongst those for whom it was a significant issue, it was not the only implication of the diagnosis. Some participants also questioned their womanhood and bodily autonomy also shaped how each individual experienced and made sense of their diagnosis. “Following diagnosis, I felt incomplete, less than a woman” (P10) “After my diagnosis my body had betrayed me, my body was now different” (P16) Many participants highlighted the need for much broader discussions around long-term health management, emotional wellbeing, and the lifelong nature of the condition. While fertility is undeniably a significant concern for many women with POI, this singular focus failed to acknowledge the wider and lifelong consequences of the condition. Critical aspects of care such as the need for long-term HRT, monitoring for cardiovascular and bone health, and managing the emotional burden of the condition were frequently overlooked. “We never spoke about treatment for symptoms or the long-term impact of POI” (P8) “I’ve done my own research because the focus was only about having children” (P2)

This study highlights the critical importance of communication in the diagnosis of POI, with particular emphasis on how the manner of communication profoundly impacts a patient’s emotional, psychological, and physical wellbeing following a diagnosis. Whilst there is little previous research specifically related to patients’ experiences of a diagnosis of POI, research in other medical conditions such as cancer and multiple sclerosis suggest that the period of time surrounding a diagnosis can often be emotionally intense and unforgettable for the person diagnosed (20). The findings from this study demonstrate that the quality of communication can either facilitate or hinder a patient’s ability to process the diagnosis, seek support, and potentially engage in long-term management of the condition (20). Most described receiving their diagnosis as impersonal, rushed, or fragmented, often delivered via apps or a short phone consultation without explanation, leaving them confused, overwhelmed and unsupported. Previous research has also reported an association between the time spent with clinicians when being informed of a POI diagnosis and patient satisfaction with their diagnosis(21). Participants in the present study consistently highlighted that rushed consultations and communication failures were frequently linked to emotional distress, and possible long-term psychological impact. By contrast, the few participants in the study who had received personalised, face-to-face explanations described these encounters as pivotal in helping them feel acknowledged and validated following their POI diagnosis. The emotional responses to a diagnosis of POI were often profound and enduring. Women reported feelings of grief, devastation, shock, and a significant loss of identity. For many, POI was perceived not only as a medical condition but also as a transformative life event that redefined their sense of womanhood, ageing, and bodily autonomy. Previous research has indicated that a diagnosis of POI negatively affects a woman’s body image and sense of age (22). Unlike menopause at the expected age, which is a natural event and not a diagnosis, following a diagnosis of POI the association with infertility and premature ageing contributed to a sense of disconnection between physical experience and their chronological age, leading to lasting identity disruption. These findings underscore the need for clinicians to recognise the psychological burden of a POI diagnosis and to offer appropriate emotional support both at the time of diagnosis and throughout the patient’s journey. Participants also expressed frustration that clinical conversations were often narrowly focused on fertility, with little attention paid to the wider implications of POI. Areas such as the importance and need for hormone replacement therapy (HRT), to alleviate symptoms and improve long term health (23) and the importance of long-term health risks such as cardiovascular disease, osteoporosis and mental wellbeing (24) were frequently overlooked. This narrow clinical framing left women feeling that their concerns were not fully listened to or acknowledged and that their health needs beyond the role of reproduction were often minimised. Academic medicine has acknowledged the need to teach the vital skills for communicating bad news (25) to assist clinicians in making a lifechanging diagnosis such as POI. A diagnosis of POI has far-reaching implications across hormonal, psychological, and social domains and gaps remain in supporting patients both at the point of diagnosis of POI and when providing patient education (26). A more holistic and compassionate approach to communication is urgently needed, one that acknowledges the full impact of POI on a woman’s live and that offers support beyond just fertility-focused care. Strengths and Limitations This study offers rich, qualitative insight into the lived experiences of women’s diagnosis of POI and fills a pressing gap in the literature. The online format of data collection enabled a broad participation. All participants had access to digital communication, which potentially limited perspectives from those with less access or from different socioeconomic backgrounds. Due to DPIA requirements, data about participants’ ethnicity and occupations was not collected, which is a limitation of the study. A strength of the study is that the time to diagnosis of POI and being interviewed varied amongst participants from a recent diagnosis within 6 months to over 10 years since diagnosis offering a variety of timescales. See table 1. Clinical Implications The findings of this study strongly reinforce the recently updated 2024 ESHRE guidelines on POI, which advocate for early, accurate diagnosis, comprehensive patient education, and multidisciplinary care (14). The guidelines offer specific information on supporting a patient with a POI diagnosis in their SPIKES protocol for guidance (27). These guidelines provide a structured, evidence-based approach that aligns closely with the needs of people with POI and are also voiced by the women interviewed for this study. One of the most critical areas for improvement is the setting and manner in which the diagnosis is delivered. Clinicians must prioritise face-to-face consultations wherever possible, using language that is clear, empathetic, and supportive. Effective communication not only improves the patient experience but also increases adherence to treatment, trust in healthcare professionals, and long-term psychological resilience.

This study highlights that the manner in which POI is communicated has a significant and lasting impact on women’s experiences and outcomes in the UK both in NHS and private healthcare. These findings reveal dissatisfaction amongst participants with how their POI diagnosis was communicated. A lack of face-to-face consultations, insufficient explanation, and limited follow-up contributed to feelings of abandonment, confusion, and a lack of education in the healthcare system. Critical gaps remain in both communication at diagnosis and healthcare education on the condition. The diagnosis of POI is a pivotal moment for the patient. How that moment is handled by healthcare professionals matters deeply. It can shape whether a woman feels empowered or isolated, informed or confused, supported or abandoned. When clinicians took time to explain the diagnosis, address emotional reactions and offer follow up support these encounters were remembered positively, even when the news itself wasn’t. Embedding the ESHRE guidelines into national protocols would help ensure consistency in the identification, communication, and long-term management of POI. The need for sensitive patient-centred communication is especially critical in the context of a condition such as POI that carries profound implications for both reproductive and long-term health, identity and long-term wellbeing. A more holistic and compassionate approach to communication is urgently needed, one that acknowledges the full impact of POI on a woman’s live and supports her beyond just fertility-focused care. By listening to women’s stories and integrating these experiences into practice and policy, healthcare can move closer to offering not just an effective medical management of POI, but also meaningful, respectful, and life-affirming care. The opportunity now exists through adherence to updated guidelines, improvements in professional education, and thoughtful system change to transform the POI diagnosis from a moment of distress into one of informed support, resilience, and hope. Table 1 Participant Demographic Information | Age at interview | 18-24 | 3 | | 25-34 | 4 | | | 35-44 | 5 | | | 45-54 | 4 | | | Age at diagnosis | 12-18 | 2 | | 19-24 | 2 | | | 25-34 | 7 | | | 35-40 | 5 | | | Time since diagnosis | 10 years | 4 |

The authors would like to thank all the participants for giving their time and their participation in the study. Disclosure of interests Kate Pleace has previously been paid as an educational speaker for Besins UK. Contribution to authorship The authors have contributed to this work as follows: Kate Pleace was responsible for the conception and design of the study, coordinated the research process, and wrote the article. Nicky Hudson, Cathy Herbrand, and Caroline Law assisted with the planning of the study, supported the analysis and interpretation of findings, and contributed to writing, revising, and approving the manuscript. All authors reviewed agree to be accountable for the integrity and accuracy of the work. Details of ethical approval Ethical approval was obtained on the 21 st of February 2025 from De Montfort University Ethics Committee HLSREF 545624. Funding for application No funding was received for the research or completion of this article.

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Authors Metrics & Citations Metrics Article Usage 185views 120downloads Citations Download citation Kate Pleace, Caroline Law, Cathy Herbrand, et al. Giving a diagnosis of Premature Ovarian Insufficiency: The Importance of Good Communication. Names of Co-authors. Authorea. 29 August 2025. DOI: https://doi.org/10.22541/au.175648023.32530883/v1 DOI: https://doi.org/10.22541/au.175648023.32530883/v1 If you have the appropriate software installed, you can download article citation data to the citation manager of your choice. Simply select your manager software from the list below and click Download. For more information or tips please see 'Downloading to a citation manager' in the Help menu.