Translation of Chronic Pelvic Pain Experience into Patient Treatment Preference Profiles with Q-Methodology.

We utilized a patient advisory group and Q-methodology to translate qualitative patient perspectives on female chronic pelvic pain (FCPP) treatment into measurable patient preference profiles that preliminarily map to possible treatment options. The limited guidelines on FCPP treatment inhibit treatment decision-making.( 31 – 33 ) Despite clear recommendation from the American College of Obstetricians and Gynecologists’ FCPP that patient autonomy in decision-making is key to success in FCPP( 34 ) and research demonstrating patient preference for FCPP treatment individualization,( 12 , 13 , 35 ) no existing treatment guidelines instruct clinicians on how to integrate patient perspectives into treatment. Our former research revealed that perspectives around FCPP treatment are difficult for patients to express and providers to understand,( 12 ) so clinical guidance is sorely needed. Given these deficiencies, we require tools to measure patient viewpoints in FCPP treatment. As stakeholder engagement improves outcomes,( 10 , 36 ) the translation of FCPP viewpoints into unique patient preference profiles advances possibilities for treatment success. These patient preference profiles will allow patients to express a unique viewpoint to their provider. Also, these profiles enable us to measure how patients want to interact with their provider and viewpoints on considerations such as frequency of visits, level of workup, and social support. Therefore, in the future, these profiles may be applied to navigating follow-up schedules, provider-patient communication, and other logistical tailoring. Future tools developed using these patient preference profiles would aim to optimize understanding between patient and provider around treatment options. However, such tools would not serve as substitutes for evidence-based medicine or informed consent. Patient profiles that our preliminary mapping indicated may align with more risky interventions, such as narcotic medications or surgery, would not preclude the need for careful consideration of the safety of these options for patients that align with this profile. Future work must investigate safety of treatment individualization. Possible future benefits of treatment alignment using patient preference profiles would include improved patient comprehension of treatment options in their own context, decreasing decisional regret and care dissatisfaction. As these changes could result in decreased non-compliance, time and interventions necessary for success, and costs, future healthcare systems could benefit from improved patient satisfaction with less resource expenditure. Future research should prioritize outcomes of feasibility and cost-efficiency. Q-methodology provides an effective, nuanced method to translate complex, individual patient views into measurable profiles for clinical application.( 14 , 15 ) Q-methodology is increasingly used to explore decision-making in chronic pain syndromes( 37 – 39 ) and end-of-life care ( 40 , 41 ). Although qualitative studies on FCPPprovide rich and genuine information on patient viewpoints,( 34 , 35 ) we require the combination of Q-methodology to translate this into quantitative instruments and the aid of patient stakeholders on the PAG to maintain fidelity to the patient voice. As next steps, we plan to utilize PAB input and FCPP focus group to further validate these patient profiles and treatments with which they would align. In the future, to make this work clinically useful, we plan to develop and clinically test a decision-aid that utilizes these profiles to suggest individualized treatment plans and iteratively improve this clinical tool. As healthcare is fraught with decision-making that demands patient engagement and provider understanding of patient viewpoints, the methods sequence utilized in this study, termed IMAP ( I ntegrating M otivations, preferences, and A ttitudes into action P lans), has myriad other possibilities for clinical application. IMAP could inform decision-making tools in contraception choice, sexual practices, vaccine administration, and fertility preservation. Strengths of these methods include a community-engaged design, maintaining validity of the patient experience. We conducted this study in a rural, multicultural setting where community engagement in healthcare is common,( 12 ) with conception elicitation and formulation of the Q-set in both English and Spanish, encouraging more engagement. Lastly, we employed a transparent and iterative development process for the qualitative codebook, Q-set, and factor profiles. This study’s limitations are predominantly due to the inability to access every viewpoint on FCPP. Patients who can access healthcare, have the confidence and health literacy to express their viewpoints, and opt to participate in research may represent a biased sample. We had minimal Q-sorts completed in the Spanish language, potentially limiting the applicability to individuals preferring this language. These patient preference profiles also may not stand the test of translation into other languages, cultures, or healthcare systems. The treatment viewpoints of patients with FCPP can be expressed in their alignment with five distinct patient preference profiles, and future research may integrate these patient perspectives into treatment decisions.

We engaged 11 PAG members from Jan 2024 to April 2025 ( Appendix 1 ). The original Q-set of 96 statements ( Appendix 4 ), wasrevised to a final Q-set of 46 statements for Q-sorting ( Table 1 ). We recruited 61 Q-sort participants (58 English; 3 Spanish) from Aug-Dec 2024, with 47 (77%) completing the Q-sort (46 English; 1 Spanish) with a mean age ~50 years, pain score ~5/10, and most identified as White non-Hispanic or Hispanic ( Table 2 ). These Q-sorts yielded 5 factors with Eigenvalues >1.0 which were selected for Varimax rotation due to many Q-sorts loading onto multiple factors. After rotation, all 5 factors were preserved, as all factors now contributed at least 5% of the variance and had uniquely loading Q-sorts ( Table 3 ). Our first patient preference profile represents FCPP patients who are “Self-empowered Realists.” They are autonomous, informed, and confident in sharing their opinions. They are also pragmatic, willing to consider any treatment about which they can make an informed decision. They want their provider to honor them as the expert; their provider should show knowledge and capability without unseating them as the driver of their own care. These patients want to be alert and in control, even for procedures. Patients aligned with this profile may map to treatments including knowledge/education, physical therapy with biofeedback, procedures without need for sedation or anesthesia, and non-systemic medications ( Table 4 ). Our second patient preference profile represents those who are “Fearless Escalators.” Once they find a provider who is willing to “fight the pain” alongside them, they want to frequently examine what is not working and move on to treatments that may work better. They value pain relief most of all, and will tolerate cost, time, and risks for success. They fear becoming “stuck” or static more than they fear downsides of treatments. Patients who align to this profile may align with treatments such as systemic medications, surgery, and interventional radiology guided injections, and they would want these considered earlier. The third patient preference profile represents those who consider themselves “Careful scientists.” They want caution, experimentation, and accurate diagnoses to determine what treatments are safe. They don’t want a provider to offer risky treatments without knowing they are necessary. They prefer to know why they have pain, are open to many diagnostic tests, and want treatment suggestions to align with what is known. They want treatments that start at lower doses and have minimal side effects. Initially, they may prefer very low-risk treatments such as physical therapy, alternative therapies, lifestyle/education, and over-the-counter medications. Our fourth patient preference profile displayed those in the role of “Trusting optimists.” These patients believe they will find the ideal solution for their FCPP. They recognize no treatment is “all good” or “all bad,” but must be examined based on its value for them as an individual. Because of this, they want a provider that recognizes them as unique and offers them individualized treatment. They accept that finding the “right” treatment plan is a long process, and they have patience with this. They value emotional wellness and are open to the “long game” of ensuring they are heard and have a support system. However, they maintain that pain can be solved by the right provider and treatment plan. They may resonate with treatments that involve more contact and support, such as counseling/therapy, group or Centering treatments, physical therapy, alternative therapies, and repeated nerve stimulation treatments. Our fifth patient preference profile represents those who are “Eager to Move On.” These patients believe that pain should be “fixed” as quickly (and finally) as possible. These patients have less specific quality of life goals, but they want to “get back to normal” and live their lives as they were before the pain. They are very independent, and don’t want their FCPP to be a burden to people in their lives, including their providers, so they engage in medical care only once they have exhausted their own resources. Once in medical care, however, they want to “go hard and fast” to resolve the pain. They don’t want to have a long-term obligation for more treatments, medications, or appointments. Options are judged by their ability to complete treatment as soon as possible. Patients aligned with this profile may resonate with treatments such as one course of physical therapy or injections, over-the-counter medications, invasive surgery, or short-term systemic medications.

Q-methodology is the study of subjectivity, designed to capture multiple perspectives within a group using qualitative and quantitative methods. Q-methodology includes development of the concourse of communication (statements encompassing all the subject matter); the selection of the Q-set (a subset of statements); the sorting of the Q-set (Q-sort); analysis of Q-sorts with correlation and factor analysis (FA); the determining of Q factors; and the interpretation of those factors as perspectives. The concourse of communication is built from concept elicitation, such as interviewing stakeholders. From this, we select the most relevant and important to form the Q-set. Each statement retains the voices of the participants and adheres to principles of survey study question design.( 20 , 21 ) Most Q-sets are 20-50 statements.( 19 ) The primary data collection tool in Q-methodology, the Q-sort, is based on a comparative ranking approach. Participants are provided with a grid and asked to rank statements from the Q-set onto the grid according to instructions, such as how much they agree with the statement.( Figure 2 ) The process of performing the Q-sort is like sorting cards on a tabletop: the participant places a statement under a section of a grid according to how they react to that statement relative to the other statements, making choices between statements throughout. The Q-sort is completed once they have put all the statements in their places in the grid. Q-methodology researchers choose the structure of the grid, and the sorting can be done in stages. For example, participants can initially sort statements into three simple columns (e.g., agree, neutral, disagree) and put any number of statements into these columns. This helps participants get organized and familiar with the statements. Then participants may sort these same statements again in more detail or with more restrictions on the number of statements they can put in each column. The dataset of many Q-sorts is used for factor analysis. Q-methodology is the inverse of standard R-methodology,( 14 , 15 ) which takes data from individuals (e.g., through surveys) to describe the participants who gave these data. In Q-methodology, we instead generate the possible scales that describe an individual’s viewpoint. Factors are not mutually exclusive; retained factors are all deemed necessary to capture an individual’s viewpoint. This cross-sectional study involved a patient advisory group (PAG) to serve as content experts in FCPP treatment choice and advise the research team with their perspectives regarding Q-set formation, interpretation of factors, and preliminary mapping of factors to possible treatments based on profiles ( Figure 1 , Appendix 1 ). The PAG consisted of self-identified women who were at least 18 years old, had experience with treatment decisions for their FCPP due to diagnoses ≥1 month, defined as pain in the pelvic area ≥6 months per guidelines.( 9 ) They were purposively sampled from tertiary care clinics that provide FCPP care to include ≥2 women representing each of the 4 common FCPP diagnoses: musculoskeletal pain, endometriosis/adenomyosis, chronic bladder pain, and vestibulovulvodynia, with overlap of these conditions expected. PAB members gave informed consent for this IRB-approved study (HRRC # 22-107). The PAG reviewed qualitative study data collected formerly by focus groups and interviews of FCPP patients, community health workers, and providers,( 12 ) and commented on what concepts were most vital in a series of guided, facilitated discussions led by an expert facilitator (HRB), an experienced qualitative researcher who identifies as a non-Hispanic, white woman ( Appendix 2 ). PAG members also had the opportunity to meet one-on-one with the facilitator and provided commentary between meetings ( Figure 1 ). The first PAG meeting reviewed basic concepts of Q-methodology( 14 , 15 ) and the PAG’s role in the research team ( Appendix 3 ). The PAG’s discussions were audio recorded, transcribed, and underwent qualitative content analysis in NVivo 14 (Lumivero, 2025) using the coding scheme from the previous qualitative study.( 12 ) After the study team drafted an initial set of Q-set statements based on these concepts, the PAG reviewed statements iteratively for clarity, relevance, concept coverage and redundancy. After each round of PAG input, author KM updated the Q-set and met with a Q-methodology expert (MC) for statement refinement. All Q-sort statements were translated into English and Spanish using linguistic translation and back-translation. Q-sort participants were continuously recruited by convenience sampling through tertiary care clinics that care for FCPP patients and gave informed consent through the same IRB-approved study. Q-sort participants had the same inclusion criteria as the PAG, but were excluded if they had undergone surgery or trauma in the abdomen, pelvis, or upper legs within the previous two weeks and still required narcotic medications; were currently being treated for active pelvic or urinary infection; or were unable to access or comply with many FCPP treatments due to logistical barriers unrelated to patient choice. Based on our number of Q-set statements, our goal was to recruit approximately 40-50 patients.( 14 , 15 ) Just prior to performing the Q-sort, participants completed questionnaires on demographics, medical and treatment history, and validated questionnaires on pain experience,( 22 – 24 ) mental health,( 25 , 26 ) trauma history,( 27 ) and personal spiritual beliefs.( 28 ) Q-sorts were performed electronically using the Q-sorTouch tool ( 29 ) in two phases. The initial sort asked participants to categorize each of the Q-set statements as disagree, neutral, or agree, and they could put any number of statements into any category. The second sort presented the same Q-set statements in a random order and asked participants to sort these into scaled boxes of 1 to 7 (1= “most agree” and 7= “most disagree”). This sort required participants to put only a certain number of statements under each score for a normal distribution ( Figure 3 ). We conducted centroid factor analysis (FA) with KADE (Ken-Q v3), a statistical software specifically developed for analyzing Q-sort data.( 30 ) Centroid FA is preferred as it leaves all possible solutions open rather than defaulting to the mathematically best solution. The KADE correlation matrix demonstrates intercorrelations between each of the Q-sort configurations. KADE extracts factors from this correlation matrix, with each factor reflecting a portion of common variance. Participants that ranked the statements in a similar way would be clustered together and load onto the same factor.( 14 , 15 ) Varimax rotation is performed to maximize the amount of variance explained by each factor. Standard criteria, such as the Kaiser-Guttman rule, are used to determine the number of factors to extract. Centroid FA with Brown’s approach was used for extraction of unrotated factors with seven centroids, followed by Horst’s centroid extraction which maintains factors that have Eigenvalues >1.0, and all factors with Eigenvalues >1.0 selected for possible rotation. Varimax rotation was used when many Q-sorts were significantly loading onto multiple factors. For each factor, we calculated the Z-score of each statement in the Q-set, a standardized score (standard deviations from the mean) representing the weighted position of a statement relative to an assumed mean ranking of zero. From these Z-scores, we determined statements that had consensus (similar Z-scores across all factors), distinguishing statements (significantly different Z-scores for that factor compared to other factors), and created factors arrays, which describe how a Q-set completed from the viewpoint of that factor would rank each statement in the Q-set. Factor arrays, consensus and distinguishing statements, questionnaire responses of participants’ Q-sorts that loaded significantly onto the factor, and qualitative statements given by patients who loaded onto the factor were used to provide a holistic interpretation of each factor.( 15 ) Factors in this phase were termed patient preference profiles, as they were interpreted as shared perspectives on FCPP treatment. The PAG then discussed and clarified these descriptions, initially as a facilitated group discussion and then via email or one-on-one virtual meetings. Authors KM and HRB compiled suggestions and completed final versions of each profile. After interpretation, the research team, including the PAG, performed preliminary mapping of these profiles to FCPP treatment choices that may align with that outlook.

Female chronic pelvic pain (FCPP) affects one in four women.( 1 – 3 ) Even those patients who enter medical care improve little due to low treatment compliance and high care complexity.( 4 , 5 ) This problem is further exacerbated by poor communication between patients and healthcare professionals.( 6 , 7 ) In fact, even the safest, most effective treatment for FCPP, pelvic floor physical therapy, is rarely successful due to lack of patient engagement.( 8 , 9 ) Patient life circumstances, risk perception, inconvenience tolerance, cultural beliefs, and countless unmeasured factors are key determinants of treatment compliance and outcomes.( 10 ) Current FCPP care guidelines do not integrate these factors,( 11 ) hindering treatment planning and patient engagement.( 7 , 12 ) Past qualitative work describes individual patient perspectives on FCPP treatment,( 12 , 13 ) but there is a dearth of clinical guidance on how to integrate these perspectives into treatment approaches. Mapping patients’ unique perspectives into possible aligned treatment choices is a critical next step to improving patient compliance, satisfaction, and pain outcomes. Q-methodology, a process that measures subjective priorities,( 14 , 15 ) has revolutionized our understanding of medical option consideration, such as seeking primary care, infant vaccination, and which medications may be chosen by prescribers.( 16 – 18 ) In fact, Q-methodology has been applied to understanding the different paths women can take to navigating complex experiences such as postpartum pelvic floor damage.( 19 ) Q-methodology has potential to translate patient experiences and perspectives around FCPP treatment into usable treatment guidance. The aim of this study was to translate FCPP stakeholder viewpoints into patient preference profiles for treatment of FCPP by utilizing the Q-methodological approach and input of a patient advisory group.