Author
SMF and NK conceived and designed the study, performed independent qualitative coding, and contributed to thematic analysis and interpretation. SMF additionally led the planning, coordination, and execution of the study, conducted the quantitative analysis, and drafted the manuscript. SC and MC assisted with data cleaning, analysis, visualization, and manuscript revisions. ML contributed to study design, clinical interpretation of findings, and manuscript revision. All authors contributed to the interpretation of data, critically revised the manuscript for important intellectual content, and approved the final version. All authors accept full responsibility for the integrity of the work as published.
Ethics
The study was reviewed and approved by the Hamilton Integrated Research Ethics Board (HiREB: 17776; 4 July 2024). Direct participant quotations were not included, as the study was conducted under a waiver of consent. Instead, findings are reported through synthesized thematic descriptions.
Funding
This research did not receive any specific grant from funding agencies in the public, commercial, or not‐for‐profit sectors.
Results
A total of 969 participants were evaluated, with 649 meeting the inclusion criteria and being included in the analysis (Figure 1 ). Six duplicate records identified during data cleaning reflected identical intake forms submitted twice by the same individual due to an electronic entry error. Table 1 summarizes the patient characteristics of those included. Participants had a mean age of 36.7 years (SD ± 8.7), and preceding intake, 61.2% were diagnosed with endometriosis on ultrasound, 80.1% reported having CPP, and 38.8% had isolated CPP without a concurrent ultrasound‐confirmed diagnosis of endometriosis.
Study flow chart depicting participant inclusion and exclusion. Six duplicate records were removed due to repeat electronic submissions of the same intake form; all participants included represented unique, first‐time referrals.
Characteristics of included participants ( N = 649).
Note : Extended health benefits refer to private or employer‐provided insurance covering non–Ontario Health Insurance Plan (OHIP) services (e.g., physiotherapy, mental health, or medications).
Abbreviations: SD, standard deviation; TENS, transcutaneous electrical nerve stimulation; VAS, visual analog scale.
A total of five overarching themes were identified through codebook thematic analysis, including (1) managing pain and symptoms across a broad spectrum; (2) pursuing diagnostic clarity and validation; (3) seeking knowledge to navigate the disease and its management; (4) restoring daily function, relationships, and mental well‐being; and (5) balancing symptom relief with fertility planning and preservation. A total of 20 subthemes were also identified. Table 2 overviews the main themes, subthemes, and brief descriptions. Each theme title was selected to reflect the central patient‐reported insight rather than a single categorical label. All frequencies in this section refer to the proportion of participants whose qualitative responses were coded under each theme, rather than from survey checkboxes or structured responses.
Themes, subthemes, and descriptions identified through qualitative thematic analysis.
Based on coded open‐ended responses, pain and symptom management was the most reported priority, cited by 85.1% (552/649). As described by participants, 16 varying key pain concerns included dysmenorrhea, CPP, dyspareunia, and bowel‐related pain. Additionally, participants highlighted less commonly recognized pain symptoms, including lower back pain, migraines, neuropathic or sciatic pain, ovarian pain, urinary pain, umbilical pain, leg and groin pain, and pleuritic pain. Participants emphasized the need for effective management of debilitating flare‐ups, often seeking relief for multiple pain types simultaneously.
Non‐pain symptoms were also a concern, with participants prioritizing relief from 20 varying symptoms: abnormal uterine bleeding, bloating, constipation, fatigue, nausea, and mental health symptoms such as anxiety and depression. Participants also described a range of additional symptoms, including brain fog, swelling, urinary dysfunction, vaginal itching, nocturia, diarrhea, hormonal imbalances, and premenstrual syndrome. Notably, these symptoms were described as interrelated with pain and broader QOL concerns.
Treatment priorities varied, with participants expressing a preference for alternatives to hormonal therapy due to side effects. Some narratives also referenced surgical interventions, including excision surgery or hysterectomy, particularly after exhausting other options. While others prioritized holistic management strategies, such as pelvic floor physiotherapy, dietary modifications, and lifestyle adjustments, as complementary or primary approaches. Participants further highlighted the importance of integrated care to manage endometriosis alongside comorbid conditions, such as irritable bowel syndrome (IBS), polycystic ovary syndrome (PCOS), interstitial cystitis, and adenomyosis.
Based on qualitative coding of open‐ended responses, 45.1% (293/649) emphasized the need for diagnostic clarity, as described by those who sought a definitive explanation for their symptoms and validation of their experiences. This desire was amplified among individuals who had previously been misdiagnosed or faced skepticism from health care providers or personal relationships. Participants underscored the importance of knowing not just whether they had endometriosis but also the severity and exact location, particularly in areas like the bowel or diaphragm where they were experiencing specific symptoms.
Diagnostic clarity was also viewed as central to active fertility desires and reproductive planning. As reported by participants, understanding how endometriosis could affect fertility‐guided decisions about potential treatments, such as fertility‐sparing surgeries or assisted reproductive technologies. Another mentioned priority was ruling out other conditions—particularly malignancies—and achieving a broader understanding of their pelvic health assessment. Finally, participants noted that ongoing diagnostic evaluations were essential for tracking disease progression and recurrence. They described wanting regular assessments to monitor changes and refine long‐term management strategies, especially when symptoms evolved over time.
Based on coded open‐ended responses, 27.3% (177/649) described a strong need for comprehensive information about endometriosis. They emphasized wanting to understand the causes, symptoms, and potential long‐term consequences of the disease, as well as how it might intersect with coexisting health conditions. Participants highlighted how inadequate education contributed to feeling misunderstood or dismissed in clinical settings.
Beyond general information, participants underscored the importance of clear guidance on diagnostic options—such as ultrasounds, magnetic resonance imaging (MRI), and laparoscopy—including each approach's benefits and limitations. They expressed frustration at navigating these options without sufficient support or explanation. Additionally, participants sought detailed knowledge of treatment strategies, particularly concerning the long‐term impact of hormonal therapies and their potential side effects. For those approaching or experiencing menopause, learning how endometriosis symptoms might change during this life stage was paramount. They wanted tailored information on adapting treatment plans and managing evolving symptom profiles.
In narrative responses, 26.0% (169/649) prioritized improving QOL, as described by those who felt their lives had been “stolen” by endometriosis and sought to regain a sense of normalcy. Narratives emphasized the need for symptom management to restore their ability to work, attend school, or complete daily tasks, describing frustration over the loss of independence and routine.
Social and familial relationships were also a key priority, with participants wanting to engage more meaningfully with loved ones without pain or fatigue limiting their interactions. Participants highlighted the emotional toll of missing social events, leading to isolation and distress. Similarly, resuming physical activities, including exercise and hobbies, was mentioned as a goal, with participants emphasizing the importance of these activities for both physical health and emotional well‐being. Intimacy and sexual health were additional priorities, as described by those who experienced pain during intercourse, affecting both their relationships and self‐esteem. Narratives underscored the need for effective symptom management to restore physical comfort and emotional connection. Mental and emotional well‐being was emphasized, with participants describing the impact of chronic pain, anxiety, and depression on their overall QOL.
Based on qualitative coding of open‐ended responses, 14.9% (97/649) prioritized fertility, as described by those seeking guidance on optimizing conception and understanding how endometriosis impacts reproductive health. Narratives focused on future fertility planning, with participants expressing a need for clear information on fertility preservation and the best timing and approach for pregnancy. In addition to planning, participants highlighted the challenge of navigating conflicting advice on fertility treatments, describing frustration over inconsistent information and uncertainty regarding treatment effectiveness.
Concerns also extended to the impact of past and current treatments on fertility. Participants questioned whether hormonal therapies or surgeries had compromised their reproductive potential. Balancing symptom management with fertility preservation was a key priority, as described by those seeking individualized, nuanced guidance. For participants who had already conceived, postpartum care and endometriosis management were critical concerns. Narratives expressed uncertainties about resuming pain management or hormonal treatments while caring for their newborns.
As summarized in Table 3 , the quantitative findings depict the ranking of themes based on life course and disease presentation. The following summary corresponds directly to the subgroup distributions presented in Table 3 , outlining how patient priorities varied by age and disease phenotype. Frequencies represent the proportion of participants whose open‐ended responses were coded under each theme. Pain and symptom management was the most frequently prioritized concern across all subgroups, reported by 552 of 649 participants (85.1%). Fertility ranked second among participants with ovarian endometriosis (32/115; 27.8%) and those with both ovarian and deep disease (21/76; 27.6%), as well as those aged 25–34 (34/141; 24.1%) and 35–44 (32/158; 20.3%). In contrast, fertility was infrequently prioritized among participants aged 18–24 (6/69; 8.7%) and those with superficial disease (15/121; 12.4%) or presumptive diagnoses (10/90; 11.1%). QOL and education were more commonly reported among participants aged 45 and older, with quality of life prioritized by 10/24 (41.7%) in the 45–54 age group and 6/14 (42.9%) in those over 55. Participants with presumptive or superficial disease more often emphasized diagnostic clarity (34/90; 37.8% and 43/121; 35.5%, respectively) and daily function.
Ranked themes by age group and endometriosis phenotype, with participant distribution ( N = 649), integrating qualitative thematic rankings with quantitative subgroup data.
1. Managing pain and symptoms across a broad spectrum
2. Pursuing diagnostic clarity and validation
3. Restoring daily function, relationships, and mental well‐being
4. Seeking knowledge to navigate the disease and its management
5. Balancing symptom relief with fertility planning and preservation
1. Managing pain and symptoms across a broad spectrum
2. Pursuing diagnostic clarity and validation
3. Balancing symptom relief with fertility planning and preservation
4. Restoring daily function, relationships, and mental well‐being
5. Seeking knowledge to navigate the disease and its management
1. Managing pain and symptoms across a broad spectrum
2. Pursuing diagnostic clarity and validation
3. Balancing symptom relief with fertility planning and preservation
4. Restoring daily function, relationships, and mental well‐being
5. Seeking knowledge to navigate the disease and its management
1. Managing pain and symptoms across a broad spectrum
2. Pursuing diagnostic clarity and validation
3. Restoring daily function, relationships, and mental well‐being
4. Seeking knowledge to navigate the disease and its management
5. Balancing symptom relief with fertility planning and preservation
1. Managing pain and symptoms across a broad spectrum
2. Pursuing diagnostic clarity and validation
3. Restoring daily function, relationships, and mental well‐being
4. Seeking knowledge to navigate the disease and its management
5. Balancing symptom relief with fertility planning and preservation
1. Managing pain and symptoms across a broad spectrum
2. Pursuing diagnostic clarity and validation
3. Restoring daily function, relationships, and mental well‐being
4. Seeking knowledge to navigate the disease and its management
5. Balancing symptom relief with fertility planning and preservation
1. Managing pain and symptoms across a broad spectrum
2. Balancing symptom relief with fertility planning and preservation
3. Pursuing diagnostic clarity and validation
4. Restoring daily function, relationships, and mental well‐being
5. Seeking knowledge to navigate the disease and its management
1. Managing pain and symptoms across a broad spectrum
2. Pursuing diagnostic clarity and validation
3. Balancing symptom relief with fertility planning and preservation
4. Restoring daily function, relationships, and mental well‐being
5. Seeking knowledge to navigate the disease and its management
1. Managing pain and symptoms across a broad spectrum
2. Balancing symptom relief with fertility planning and preservation
3. Pursuing diagnostic clarity and validation
4. Restoring daily function, relationships, and mental well‐being
5. Seeking knowledge to navigate the disease and its management
1. Managing pain and symptoms across a broad spectrum
2. Pursuing diagnostic clarity and validation
3. Restoring daily function, relationships, and mental well‐being
4. Seeking knowledge to navigate the disease and its management
5. Balancing symptom relief with fertility planning and preservation
Theme ranking reflects the relative frequency of coded open‐ended responses within each subgroup. These are descriptive and not derived from structured ranking questions. Endometriosis phenotype was determined using transvaginal ultrasound; individuals without sonographic evidence of endometriosis were classified as having a presumptive clinical diagnosis based on symptoms consistent with superficial disease.
Discussion
This study aimed to explore the care priorities of individuals with endometriosis, with or without CPP, as they sought care at a tertiary center. Through a codebook thematic analysis of patient‐reported narratives, we identified five overarching themes: (1) managing pain and symptoms across a broad spectrum; (2) pursuing diagnostic clarity and validation; (3) seeking knowledge to navigate the disease and its management; (4) restoring daily function, relationships, and mental well‐being; and (5) balancing symptom relief with fertility planning and preservation. A total of 20 subthemes further illustrated the complexity and variability of patient perspectives. By integrating these qualitative findings with quantitative subgroup analysis, we demonstrate how patient priorities differ across life stages and endometriosis phenotypes, reinforcing the need for adaptable, personalized models of care.
This study offers one of the first large‐scale analyses to rank patient‐defined care priorities in endometriosis by both disease phenotype and life stage. While pain and symptom management was the most consistently prioritized theme across all groups, the relative ranking of other concerns varied meaningfully. Fertility, for example, was most frequently prioritized by individuals with ovarian or deep endometriosis in early and mid‐adulthood, yet it rarely ranked above pain or diagnostic concerns. Education and quality of life gained prominence among older participants, suggesting a shift in care needs over time. Rather than presenting a singular hierarchy of importance, these ranked themes reflect the evolving and intersecting priorities that shape patients' experiences. By integrating frequency patterns with narrative depth, our findings emphasize the importance of individualized care planning that adapts to patients' disease stage, reproductive goals, and life circumstances.
The journey of individuals with endometriosis is often complex and arduous, compounded by difficulties in navigating the healthcare system.
14
Throughout this process, patients frequently face the normalization of their symptoms, significant diagnostic delays, and ineffective treatments, all of which result in diminished autonomy and a deteriorated QOL.
4
,
5
While these challenges are well documented within the endometriosis population, the heterogeneity of patient experiences should, in theory, result in diverse patient goals and priorities.
Endometriosis remains without a cure, and the current landscape of treatment primarily relies on hormonal therapies to suppress cyclical pain or surgical excision to remove visible lesions,
15
,
16
,
17
both of which, as a solitary treatment, are frequently insufficient and associated with the recurrence of symptoms and lesions.
18
,
19
,
20
Our findings revealed that pain and symptom management was the most frequently reported priority, in line with previously identified research priorities in Australia.
21
Many participants sought alternatives to hormonal therapy due to side effects or a preference for natural approaches. Others prioritized long‐term solutions, as standard treatments failed to address their symptoms. While conventional therapy focuses on dysmenorrhea, participants reported a total of 36 pain and non‐pain‐related symptoms, underscoring the complexity of endometriosis. Symptom variability led many to seek treatment modifications, emphasizing the need for adaptive, patient‐centered care.
Despite advancements in endometriosis research and care, the persistent diagnostic delay remains a critical barrier to effective treatment. Recent progress has suggested improved accuracy of transvaginal ultrasound (TVUS) in diagnosing DE and OE
22
; however, SE remains the most prevalent and elusive form.
23
,
24
Diagnosis was the highest priority among participants with SE or a presumptive diagnosis (OE and DE ruled out on TVUS), reflecting the limitations of current imaging in detecting SE, and many reported undergoing multiple diagnostic attempts without a clear result. Beyond confirmation, participants sought information on disease stage, location, recurrence, and progression, going beyond the mere goal of a diagnosis, promoting an understanding of disease impact and making informed decisions.
Education is vital for empowering endometriosis patients to make informed decisions.
25
,
26
Participants sought information on treatment, management, prognosis, and long‐term implications, often feeling uninformed about treatment duration, risks, and discontinuation, especially concerning fertility. Postmenopausal participants sought clarity on disease persistence, challenging the misconception that endometriosis resolves after menopause.
27
,
28
Beyond seeking information, patients emphasized the need to regain a sense of normalcy in their daily lives, including work, relationships, and overall well‐being, underscoring the importance of comprehensive, patient‐centered management, a recurring theme in the literature.
29
,
30
,
31
While gynecologists are often the primary diagnosticians, they may lack the resources to address the disease's multisystem effects, contributing to suboptimal outcomes. Integrating multidisciplinary care, including pain management, physical therapy, and mental health support, is essential to addressing patients' diverse needs.
Among priorities, fertility emerged as a central concern, reflecting the well‐established relationship between endometriosis and reproductive challenges, including conception difficulties and increased pregnancy risks.
32
Notably, fertility was a major concern throughout adulthood, with heightened prioritization among those with OE and DE + OE, likely due to the association between OE and diminished ovarian reserve.
33
,
34
Additionally, DE may contribute to infertility through anatomical distortions and adhesions affecting reproductive function.
35
,
36
,
37
Given these challenges, individualized fertility counseling should be integrated early in care, addressing phenotype‐specific fertility risks, preservation strategies, and treatment decisions aligned with patients' reproductive goals.
A multidisciplinary model of endometriosis care refers to coordinated, patient‐centered management delivered by an integrated team of clinicians and allied health professionals. These models aim to address the intersecting biological, psychosocial, and functional dimensions of endometriosis. Existing frameworks demonstrate that multidisciplinary structures improve continuity of care and patient satisfaction.
8
,
38
,
39
,
40
,
41
Our findings support this approach, as participants frequently described overlapping priorities across pain, mental health, fertility, and daily function, reflecting needs that extend beyond gynecologic intervention alone. The alignment of these priorities across life stages further underscores the necessity of a coordinated, flexible care model responsive to evolving patient goals.
Despite advancements in endometriosis research, critical gaps remain in aligning clinical care with patient priorities. Future research should aim to optimize diagnostic pathways, particularly for SE, to reduce diagnostic delays and enhance early detection. Studies exploring the integration of multidisciplinary, patient‐centered care models, including gynecology, pain management, mental health support, and fertility counseling, are essential to addressing the complex needs of individuals with endometriosis. Additionally, longitudinal research is necessary to assess how patient priorities evolve over time and how personalized treatment strategies can enhance long‐term outcomes.
Using a mixed‐methods approach, the study integrates qualitative and quantitative data, offering a comprehensive understanding of patient needs beyond symptom management. The study's large sample size, drawn from a tertiary care center, allows for identifying nuanced patterns in patient priorities, particularly concerning distinct endometriosis phenotypes. To enhance analytic rigor, a structured codebook approach was employed with independent coding and reliability checks, helping to reduce interpretive bias and ensure thematic consistency across coders. Another strength lies in the focus on patient‐centered care, highlighting critical gaps in the current healthcare model and offering actionable insights for improving clinical practice.
Despite its strengths, the study has several limitations. First, data were collected from a single tertiary care center, which may limit the generalizability of the findings to broader populations, including those managed in primary care or resource‐limited settings. Second, data were collected retrospectively at the point of intake, without the opportunity for longitudinal or iterative exploration of evolving patient priorities. Additionally, participants in tertiary care settings may have more complex disease presentations or longer disease durations, potentially skewing their priorities compared to newly diagnosed or asymptomatic patients. While the sample included a broad age range and a spectrum of endometriosis phenotypes, the distribution of age and disease subtypes was not uniform. This heterogeneity reflects the nature of tertiary care referral patterns but may limit the generalizability of findings to populations managed in primary or general gynecology settings. Future research should investigate how priorities vary across more demographically and diagnostically diverse cohorts to enhance comparative insights between groups. While priorities were captured before any diagnostic evaluation or treatment planning at our center, participants may have had prior experiences with other providers, which could have influenced their responses. These pre‐existing experiences—positive or negative—may shape how individuals articulate their goals, potentially introducing bias independent of our clinical setting. The retrospective nature of the data collection also introduces the possibility of recall bias, as patients may struggle to recall past experiences or symptoms accurately. Furthermore, while the study explored differences across endometriosis phenotypes, it did not systematically examine the influence of other factors, such as socioeconomic status, race, or access to care, which could limit the understanding of how social determinants of health affect patient priorities. While prior surgical history was collected, it was not analyzed as a separate cohort. The study's exploratory design and the lack of detailed surgical context limited the feasibility of a meaningful subgroup comparison. Future work may explore how prior surgical experience shapes patient priorities. Lastly, because our tertiary center requires referral from another clinician, the study population may overrepresent individuals with longer disease trajectories or prior unmet care needs, potentially influencing expressed priorities.
Conclusions
This study identifies the main priorities of individuals seeking tertiary endometriosis care and illustrates how these priorities shift across life stages and disease phenotypes. Participants emphasized interconnected needs spanning pain, fertility, mental health, and daily function—domains that extend beyond gynecologic management alone. These findings underscore the need for coordinated, multidisciplinary models of care that integrate expertise across relevant specialties to deliver responsive, patient‐centered management.
Introduction
Endometriosis is a pervasive and debilitating disease affecting approximately 10% of individuals presumed female at birth.
1
Traditionally associated with dysmenorrhea, dyspareunia, and infertility, recent insights reveal the heterogeneous and systemic nature of endometriosis.
2
This variability manifests in diverse patient experiences, encompassing a broad spectrum of symptoms, disease presentations, impacts on quality of life (QOL), and associated comorbidities.
3
Despite its prevalence and significance, endometriosis remains underdiagnosed and inadequately managed, leading to further downstream physical, emotional, and social burdens.
4
For many patients, the path to care remains long and fraught with frustration.
5
They continue to face dismissive attitudes, inadequate pain management, and fragmented care, resulting in years of chronic pain and ineffective treatments.
4
,
5
While such systemic challenges, including diagnostic delays and symptom burden, are well recognized, prior research often frames them through broad umbrella terms that obscure the heterogeneity and nuance of patient experience. Less is known about the specific content of patients' priorities: what they seek when they ask for “diagnosis,” what constitutes “effective management” in their eyes, and how priorities shift across endometriosis phenotypes and life stages.
6
A more nuanced understanding of these evolving priorities, grounded in large‐scale, real‐world data, could better inform patient‐centered models of care.
Reflecting the dynamic and evolving nature of patients' needs over the life course,
7
their healthcare goals and expectations may shift in response. These changes require a nuanced and individualized approach that adapts accordingly.
6
,
8
Given the complexity of patient priorities and the variability of endometriosis phenotypes, a mixed‐methods exploration is required to integrate qualitative insights on patient experiences with quantitative analysis of patterns across clinical subgroups. This combination provides both depth and breadth of understanding, allowing us to characterize how patient priorities shift with phenotype and life stage. These insights are directly translatable to personalized models of care and not achievable through single‐method approaches. This study aims to elucidate the nuanced goals and care priorities using mixed‐methods methodology among patients with endometriosis, with and without chronic pelvic pain (CPP), as they seek care at a specialized endometriosis clinic. In doing so, we advance understanding beyond broad constructs such as “diagnostic delay” and “symptom burden” to inform more tailored models of patient‐centered care.
Coi Statement
S.M.F reports advocacy work with TENC and EndoACT and grants with CIHR and CanSAGE outside submitted work. M.L reports grants from Australian MRFF, AbbVie, CanSAGE, CIHR, Hamilton Health Sciences, Hyivy, Pfizer; honoraria for lectures/writing from AIUM, GE Healthcare, Bayer, AbbVie, consultancy work with AbbVie, Hologic, Chugai, Gesynta, Roche Diagnostics, Afynia, Pfizer, affiliations with Imagendo, SUGO—Specialized Ultrasound in Gynecology and Obstetrics, outside the submitted work. The other authors did not report any potential conflicts of interest.
Materials And Methods
This study employed a retrospective mixed‐methods design to explore the priorities of individuals who presented to a specialized tertiary gynecology clinic focusing on endometriosis between January 2021 and December 2024. Eligible participants were aged 18 and older and were suspected of having endometriosis based on their clinical history and symptoms associated with endometriosis, such as, but not limited to, dysmenorrhea, dyspareunia, CPP, or infertility. All participants were new referrals to the tertiary endometriosis center and had not been previously assessed at our clinic. The tertiary endometriosis program from which participants were recruited accepts referrals from gynecologists, family physicians, and other specialists for patients with suspected or confirmed endometriosis or CPP requiring advanced diagnostic evaluation or multidisciplinary management. Self‐referral is not available, and all patients were referred by a healthcare provider. As a result, all included participants had already engaged in prior healthcare encounters before being referred to our center. Referral criteria emphasize persistent or complex pain, infertility associated with suspected endometriosis, or failure to respond to initial management in primary or general gynecology settings. Information on the specific referring provider type (e.g., primary care vs. gynecology) was not systematically captured in the intake form and therefore could not be analyzed as a subgroup in this study.
To be included, participants needed to have completed the standardized intake form at their initial clinic visit. Data were collected only at this intake visit, before any diagnostic workup, treatment discussions, or interventions. Capturing priorities at this point allowed for an unbiased reflection of patients' goals, minimizing the influence of clinical framing or treatment experiences. While the retrospective design precluded iterative probing, this approach provided insight into the priorities patients themselves chose to express when first seeking care, a critical and under‐characterized stage in the patient journey.
Qualitative data were collected from two open‐ended questions positioned at the beginning of our standardized tertiary clinic intake form, a structured tool designed to capture comprehensive patient history and care needs. These questions were intended to elicit narrative responses and to better understand patient‐defined priorities: (1) “What is the reason for your upcoming visit?” and (2) “Tell us about your goals—how can we best help you with your problems?” The two open‐ended questions were developed by the clinical team as part of routine practice at our specialized endometriosis clinic, drawing on direct experience with patient priorities encountered in care. Designed to elicit patient‐defined goals without imposing predefined categories, these questions reflect priorities as expressed in real‐world clinical settings. Additionally, demographic and clinical data were collected from the intake form, including age, symptom characteristics (type, severity (Visual Analogue Scale 0–10), and duration), past medical and surgical history, previous treatments, and comorbid conditions. Employment status and healthcare coverage were recorded, noting that in Ontario, universal healthcare covers general medical services but excludes specialized treatments, some surgeries, and ancillary services, requiring out‐of‐pocket payment or extended health benefits. Following the initial clinical visit, advanced transvaginal ultrasound findings were collected, which included an assessment of endometriosis presence or absence and subtype (deep (DE), ovarian (OE), and superficial endometriosis (SE)).
The study adhered to the Standards for Reporting Qualitative Research (SRQR)
9
and Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines to ensure standardization of reporting of qualitative findings.
10
The Good Reporting of A Mixed Methods Study (GRAMMS) was similarly used for mixed‐method reporting.
11
NVivo software (QSR International, V12) was employed for thematic analysis, and descriptive statistics were analyzed using IBM SPSS Statistics (Version 29).
Qualitative data were analyzed using a codebook thematic analysis approach.
12
,
13
Two researchers (SF, NK) independently reviewed responses and conducted initial open coding. Codes were then compared and consolidated into a shared codebook, which was iteratively refined to ensure consistency in interpretation and analytic scope. While the analysis was primarily inductive, the development of themes was informed by clinical context and prior literature on endometriosis care.
Inter‐coder reliability was assessed using Cohen's Kappa (≥0.80) to ensure coding consistency and minimize bias in theme construction. Themes were developed by conceptually grouping related codes and refined through iterative discussion among the research team. This process emphasized transparency and analytic clarity, while remaining grounded in the language and experiences described by participants. The research team practiced ongoing reflexivity throughout all stages of analysis. Reflexive exercises included discussion among the two coders and documentation of interpretive decisions, and iterative journaling after each coding session. These reflections were discussed prior to study initiation, analysis, and manuscript preparation to identify potential assumptions or disciplinary biases that could shape theme interpretation. Periodic discussions were held between coders to critically examine code application and consistency, fostering transparency and reflexive awareness during theme development.
Although frequency counts were not used to determine the importance of themes, they are reported descriptively to illustrate the patterns of commonality and variation across the dataset. All themes and frequencies reported in the qualitative results were derived from coding of open‐ended responses to the intake form, not from fixed‐response survey items. Theme frequencies represent the proportion of participants whose narrative responses included content coded under each theme. These are presented descriptively to illustrate the range and prominence of concerns.
The coding team comprised two researchers (SMF, NK) with complementary backgrounds in gynecologic research. SMF is a male PhD student with over 10 years of experience in endometriosis research, advocacy, and health policy, focusing primarily on clinical and epidemiologic investigations. NK is a female recent graduate in the biomedical sciences from the same institution, with moderate training (~1 year) in endometriosis at the time of analysis. Coding and interpretation were supervised by a clinician–researcher specializing in endometriosis (ML). Reflexive discussions were conducted to balance clinical and non‐clinical perspectives, as well as gendered and experiential standpoints, throughout analysis. No patients participated directly in coding or theme generation; however, all themes were reviewed by the broader clinical research team to ensure contextual and interpretive validity.
This study employed a convergent parallel mixed‐methods design, with qualitative and quantitative data collected and analyzed independently before integration into the discussion. Qualitative themes were compared against quantitative phenotypes to identify convergence and divergence. We examined how priorities shifted across life stages—early adulthood (18–24), mid‐adulthood (25–34), late adulthood (35–45), menopausal transition (46–54), and postmenopause (55+). Endometriosis phenotypes (SE, DE, OE, DE + OE) and the absence of endometriosis on ultrasound (where a presumptive clinical SE diagnosis was assigned) were analyzed to determine whether patient priorities differed by disease subtype. When discrepancies emerged between qualitative themes and quantitative subgroup patterns, they were treated as meaningful divergence rather than contradictions. These instances were interpreted as reflecting the complexity and multidimensionality of patient priorities and were retained as complementary insights within the integrated interpretation. Descriptive statistics were conducted using IBM SPSS Statistics (v29). No covariates or multivariable adjustments were applied, given the exploratory nature of this phase.
All eligible participants who completed the open‐ended intake questions were included in the qualitative analysis ( N = 649). This full‐sample approach was chosen to maximize variation across age groups and disease phenotypes and to reflect the full range of patient perspectives in a tertiary care context. While traditional saturation assessment is not applicable to cross‐sectional intake data of this scale, thematic stability was observed in the latter portions of the dataset, with no new major codes emerging. This suggests that analytic saturation was likely reached. Our aim was not depth per participant, but breadth across a large population sample. All analyses were exploratory and descriptive, and no formal power calculations were conducted. We intended to identify meaningful clinical patterns in patient‐reported priorities rather than test prespecified hypotheses.
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