Pain science education concepts for pelvic pain: an e-Delphi of expert clinicians

Key points

1. 01A three-round e-Delphi survey with 20 international multidisciplinary expert clinicians generated and rated pain science education concepts for female persistent pelvic pain.
2. 0273.6% of the final concepts reached consensus on their importance rating (IQR less than 1.0), and 99.2% showed stability between rounds two and three.
3. 03Overarching concepts were generated for pelvic pain in general, covering 12 categories such as all pain is real, brain and nervous system involvement, protective pain responses, and the biopsychosocial model.
4. 0416 condition-specific concepts were generated for endometriosis, adenomyosis, bladder pain syndrome, vulvodynia, and GPPPD; 7 concepts addressed specific life stages including adolescence and menopause.
5. 05A key divergence was noted between clinician and patient priorities: clinicians de-emphasised pathology-pain relationships, while patients with pelvic pain value acknowledgment of pathological contributions.

How it was conducted

Design

Three-round electronic Delphi (e-Delphi) consensus survey, reported per CREDES guidelines, pre-registered on Open Science Framework

Participants

20 expert clinicians (Round 1), 17 (Round 2), 15 (Round 3); multidisciplinary panel including physiotherapists (50%), gynaecologists (20%), psychologists, nurses, GPs; predominantly female (90%), mostly based in Australia at time of survey

Eligibility criteria

Clinical experience treating females with pelvic pain, relevant tertiary qualification, more than two years full-time equivalent experience, practised within past two years, additional training in contemporary pain science

Procedure

Round 1: open-ended questions to generate PSE concepts. Rounds 2 and 3: concepts rated on a six-point Likert scale (1=not at all important to 6=very important) in randomised order with controlled feedback between rounds

Consensus criteria

Items retained if rated as important (median greater than 3.0) and IQR less than 1.0; stability assessed by Wilcoxon matched pairs signed rank test between rounds two and three (p greater than 0.05)

Analysis

Quantitative: descriptive statistics, medians and IQRs; qualitative: inductive content analysis with inter-coder reliability (Cohen's kappa) for Round 1 open-ended responses

What they found

• Round 1: 20 panel members responded and generated PSE concepts for pelvic pain in general, plus condition-specific concepts (8 for endometriosis and adenomyosis, 2 for bladder pain syndrome, 4 for vulvodynia and vulvar pain, 1 for sexual pain) and life-stage concepts (4 for adolescents, 1 for reproductive years, 2 for post-menopausal pelvic pain).
• Round 2: 17 panel members reviewed all concepts; 82.6% reached consensus on importance rating (IQR less than 1); no concepts met exclusion criteria (all rated as important, median greater than 3.0).
• Round 3: 15 panel members responded; 73.6% of concepts reached consensus on importance rating; one concept did not meet stability between rounds two and three (p-value less than 0.05); panel condensed concepts and suggested rewording; no new concepts were added.
• Final list: consensus reached on 73.6% of final concepts (IQR less than or equal to 1.0); 124 (99.2%) concepts reached stability between rounds two and three.
• Top-rated general PSE concepts (median importance 6, IQR 0) included: all pain is real; persistent pelvic pain involves a hypersensitive and overprotective pain system; pelvic pain is not an accurate marker of a worsening condition; pain can occur in the absence of endometriosis lesions; pelvic pain can change and improve; pelvic pain is treatable; active treatment strategies promote recovery; people can gain control over their pelvic pain; pelvic pain can be influenced by psychosocial factors; pain science education can reduce anxiety, distress, and negative thoughts about pelvic pain.
• Condition-specific top concepts (median 6, IQR 0): pelvic pain flares do not necessarily mean there are endometriosis lesions nor recurrence; the amount of endometriosis seen laparoscopically does not correlate with the severity of symptoms including pain; adenomyosis can occur without pain; pelvic floor muscles can contribute to GPPPD.
• Life-stage top concept (median 6, IQR 0.75): dysmenorrhoea (period pain) that interferes with daily functioning is not normal.

Limitations

• Concepts were not systematically matched against empirical evidence; some included concepts (e.g., pain and dysfunction are often associated with imbalance) are not supported by current literature, reflecting clinician practice rather than evidence-based content.
• Scope was limited to benign gynaecological and urological pelvic pain, so no concepts were generated for gastrointestinal contributions to pelvic pain, which are clinically common.
• Concept wording was based on clinician language and would need adaptation for individual patient health literacy levels; not all concepts are applicable to every patient.
• The panel was predominantly female, mostly Australian, and recruited via purposive snowballing, which may limit geographic and cultural diversity and introduce selection bias.

Why it matters

For patients

Patients with persistent pelvic pain may benefit from education programs that explain how the brain and nervous system contribute to pain, that their pain is real and treatable, and that psychosocial factors play a role, helping them engage with biopsychosocial management rather than seeking purely biomedical treatments.

For clinicians

Clinicians now have the first expert-consensus list of pain science education concepts tailored to female persistent pelvic pain, including condition-specific content for endometriosis, vulvodynia, and GPPPD, and life-stage content for adolescents and menopausal women, which can guide curriculum development.

For readers

This is a foundational consensus study, not a clinical trial, so the effectiveness of these concepts in improving patient outcomes remains untested; future randomised trials are needed to evaluate the efficacy of curricula built from these concepts.