Aims of study: Persistent pelvic pain affects up to one in four women and up to one in seven men worldwide.1 Pelvic pain encompasses the experience of pain in the perineum and genitals, and pain in this area can contribute to lower urinary tract and bowel issues, sexual dysfunction, pelvic floor muscle disorders and gynecological dysfunction. Studies in this population have demonstrated changes in somatosensory integration and significant morphological changes in the brain.2 It is well established that altered body perception in the presence of persistent pain can indicate dysfunction in the central processing of sensory information. Therefore, change in body perception is a useful clinical finding which can inform effective treatment. 

The Fremantle Back Awareness Questionnaire (FreBAQ) 3 was developed to facilitate the assessment of body perception changes in people with chronic low back pain. Currently, there is no assessment tool for use with people with persistent pelvic pain, specifically in the perineal region. The aims of this study were to develop (Study 1) and assess the content validity (Study 2) of the Fremantle Perineal Awareness Questionnaire (FrePAQ), which may help identify changes in body perception in people with persistent perineal pain.

Study 1. A modified electronic Delphi survey and cross-sectional qualitative online survey were utilized. A steering group composed of three international expert physiotherapists working with people with persistent perineal pain and one physiotherapy pain researcher who was the original author of the FreBAQ, created a draft questionnaire based on the FreBAQ to help identify changes in body perception in people with persistent perineal pain. The Delphi panel of fourteen international experts were recruited for their professional experience related to the topic via the professional networks of the four steering group members. Three Delphi rounds were completed via video teleconference.  Anonymous voting on the new questionnaire wording was completed using Qualtrics survey software. 

Study 2. To evaluate the content validity of the new questionnaire, researchers developed a qualitative online survey using Qualtrics survey software to evaluate the comprehensiveness, comprehensibility and relevance of individual items of the FrePAQ. Recruitment of participants for the validation surveys occurred via word of mouth, advertisement posters on social media platforms, advertisement in medical and allied health clinics and emails to health professionals’ client databases. To be eligible participants had to be over 18 years of age and have experienced pain in the perineal region, either continuous or cyclical, for greater than six months. Exclusion criteria included presence of cancer, neurological disease, impaired cognition, current pregnancy, within six months postpartum or non-English speaking. Participants self-screened for eligibility online before providing consent and completing the survey. Participants were asked to complete the FrePAQ before being asked about the comprehensiveness, comprehensibility and relevance of each of the nine items of the FrePAQ. These were yes/no questions and a free-text box for written responses or suggestions, with the aim of eliciting in-depth and spontaneous responses. Demographic and clinical data were collected at the end. The yes/no question responses were calculated as a percentage for each question and demographic data was summarized descriptively with the mean and standard deviations calculated. Text responses were grouped into common and recurring themes and coded. Following the first round of validation, an expert panel met via video conference to discuss participant responses, and changes were made to the pre-final version of the FrePAQ, before progressing to a second round of validation. Round Two data were analyzed in the same way as Round One.

Study 1. All fourteen panel participants completed the Delphi study. The first round commenced with 33 wording options for discussion and voting. Analysis at completion of Round One voting resulted in eight wording options being removed as per the exclusion criteria, and the addition of 29 new alternative wording suggestions. No options reached consensus in Round One, leaving 54 wording options for the second round of discussions. Following discussion during Round Two, 27 options were removed, leaving 27 options for voting. Anonymous voting revealed consensus on the wording of the questionnaire preamble. Round Three commenced with 21 wording options and 18 remained at the end for voting. Consensus was achieved following Round Three voting, with nine options reaching a median of 100%. A pre-final version of the FrePAQ was produced at the end of this process and approved by the expert panel.

Study 2. One hundred and thirty-five participants with persistent perineal pain completed a content validity survey of the pre-final version of the FrePAQ. The majority spoke English as their first language (n=124, 91.8%). One hundred and seven participants identified as female, 28 as male. Following Round One of validation, participant feedback was reviewed and discussed by the researchers and further changes were made to the questionnaire preamble and items 1, 4, 5, 6, 7, 8 and 9 to improve clarity and relevance. The wording of the questions in the validation survey were also changed for Round Two to obtain more information from participants about the content of the questions, rather than aspects of their pain experience that extended beyond changes in body perception. Fifty-three participants completed the second round of validation, including 46 identifying as females and 7 identifying as males. Forty-nine participants in Round Two spoke English as their first language (92.5%). The final questionnaire showed sufficient content validity.

Patient and expert opinion has contributed to the development of the content valid Fremantle Perineal Awareness Questionnaire. The FrePAQ is well understood, covers concepts related to persistent perineal pain, and is relevant to participants’ experiences. This is the first questionnaire to assess altered body perception in perineal pain that has been validated by people experiencing persistent perineal pain. The FrePAQ may form part of a personalised approach to care that involves assessing aspects of the pain experience that suggest alterations within the central nervous system, as well as the phenotyping of this phenomena to better guide care.

The Fremantle Perineal Awareness Questionnaire has been developed as a content-valid outcome measure to assess changes in body perception in people with perineal pain. The FrePAQ is specific to the persistent perineal pain population, and screening for changes in body perception may allow for earlier identification and more targeted treatment of perceptual deficits which may improve pain outcomes.

Engeler D, Baranowski A, Berghmans B, et al. EAU Guidelines on Chronic Pelvic Pain (2022) EAU Guidelines Office, Arnhem, The Netherlands. accessed: https://uroweb.org/guidelines/chronic-pelvic-pain
Bhatt R, Gupta A, Rapkin A, et al. Altered gray matter volume in sensorimotor and thalamic regions associated with pain in localized provoked vulvodynia: a voxel-based morphometry study. Pain.2019;160(7):1529-1540. dx.doi:10.1097/j.pain.0000000000001532.
Wand B, James M, Abbaszadeh S, et al. Assessing self-perception in patients with chronic low back pain: development of a back-specific body-perception questionnaire. Journal of Back and Musculoskeletal Rehabilitation. 2014;27(4):463-473. doi:10.3233/BMR-140467.

Continence 7S1 (2023) 100879
DOI: 10.1016/j.cont.2023.100879