Background: Qualitative research is underused despite its potential to inform and improve the quality of care of women with CPP. There is increasing use and emphasis of qualitative evidence synthesis (QES) within clinical, public health, policy and healthcare systems. QES seek to develop an understanding of health related behaviours, experiences of illness, evaluation and implementation of complex interventions. Researchers are able to gain a greater understanding of individual’s experiences, views, beliefs and priorities for healthcare. To date, there is no previous QES exploring the experience of women with CPP that has applied a CERQual approach. 

Objectives: To identify priorities of women with experience of CPP with a focus on insights that may be useful in the process of establishing Core Outcome Sets (COS) in CPP.

This study was registered with the International Prospective Register of Systematic Reviews (PROSPERO), registration number CRD42019141856. 

Search strategy: Systematic review of qualitative studies identified from Cochrane Central Register of Controlled Trials (CENTRAL), CINHAL, EMBASE, MEDLINE and PsycInfo databases. Searches were performed from database inception to December 2019 using the following search terms: “qualitative research”, "qualitative study"  “interview”, “focus group” and “chronic pelvic pain”. 

Selection criteria: We included qualitative studies describing the experience of women with CPP that used qualitative methods for data collection and analysis. Mixed method studies were not considered to ensure a homogenous sample. 

Data collection: Two independent researchers assessed the methodological quality of all included studies using an adaptation of the Critical Appraisal Skills Programme (CASP) tool (http://www.casp-uk.net) for qualitative studies. Two independent researchers extracted study characteristics including author details, year of publication, journal, objectives, study design, number of participants, method of data collection and analysis

Data analysis and synthesis: Thematic synthesis was used to analyse qualitative data from included studies. Data included direct quotations from participants describing their experience of chronic pelvic pain. The analysis was conducted collaboratively by two researchers in three stages as described by Thomas et al.The confidence of each review finding was assessed using the CERqual tool. The CERqual approach consists of four components: 1) methodological limitations of individual studies contributing to the review finding using the CASP tool, 2) relevance of findings to the review question,  3) coherence and 4) adequacy of data. These four components were assessed and described having none, minor, moderate or serious concerns. Based on an overall assessment, the confidence in the evidence for each review finding was scored as high, moderate, or low.

This systematic review was reported in accordance with the ENTREQ statement guidelines. We screened 1,019 titles and abstracts after the exclusion of 220 duplicate records. We included eight studies with a total of 201 female participants, ranging between 19 to 70 years of age. 

The quality appraisal of included studies scored a median value of 8 (out of a maximum of 10, interquartile range 7.75 -9). There was only a single study (1/8 studies, 12.5%) that met all CASP criteria. The majority of studies (7/8 studies, 87.5%) performed poorly when examining the researchers’ own role and potential bias. 

Thematic synthesis of qualitative data from included studies identified 91 codes. Similar codes were grouped together into 15 sub-themes and further organised into five meta-themes. Meta-themes included: acceptance of pain, quality of life, management of chronic pelvic pain, communication with health professionals and support. 

There was high confidence in the evidence for acceptance of pain, quality of life, and communication meta-themes. There was moderate confidence in evidence for management of CPP and support meta-themes

Findings from this meta-synthesis are a valuable contribution to the development of a meaningful COS in CPP. Authors of clinical trials often select and report outcomes without patient/user consultation or involvement. Furthermore, studies investigating interventions for CPP may include outcomes such as “satisfaction” which is a poor indicator of what a positive or negative experience entails. [22] Pertinent issues related to management of conditions may be overlooked and not reflective of patient priorities. For example, a systematic review of reported outcomes in therapeutic interventions in CPP demonstrated that quality of life was only reported by half of trials. [23] However, our study indicated that poor quality of life was a prevalent and reoccurring theme for women suffering with CPP. There is a difference in the prominence of outcomes given by clinical trials and qualitative literature. For this reason, it is imperative that qualitative studies such as ours are used in conjunction and complement findings from systematic reviews to generate outcomes for consideration and inclusion into Delphi surveys, consensus meetings and a final COS.

Additionally, we will use women’s own narratives, collected by this study, to help describe and label themes/domains using appropriate language. This will ensure that subsequent Delphi surveys are accessible and can easily be understood by key stakeholders participating in the survey such as patients. Insights from this study have facilitated a deeper understanding of which themes/domains matter most to women and why. Determining the scope of a themes/domains is vital to ensure accurate and relevant outcomes are forwarded in the COS development process as well as selection of suitable outcome measures. For example, the inclusion and impact of psychosocial factors to maximise treatment outcomes.  

Our findings identified areas of concerns such as interactions with health professionals and medical services, the lack of holistic treatment including the recognition and influence of psychosocial factors. However, the experience of women with CPP is not unique but shared across a number of chronic pain conditions. Previous meta-synthesis exploring chronic pain conditions syndromes have also alluded to delays in diagnosis, failure to recognise the individual and wider impact of pain symptoms among health professionals as well as a lack of interventions supporting women and their families. [12] [24] [25] Such feedback allows identification of areas of improvement whilst ensuring patients’ views and opinions contribute to service development. The deeper understanding of patient priorities resulting from qualitative research may not have been possible using quantitative research methodology. 

In this review, women with CPP described their negative experiences of healthcare services and highlighted the lack of individualised care, a holistic approach and continuity of care. These insights can be utilised to frame the overarching theme of future guidelines and inform a model of care women want and health providers want to provide. Future clinical priorities should focus on developing a multi-disciplinary and patient-centered approach. At present, psychological and behavioural therapies are neglected despite the overwhelming evidence supporting their use in reducing pain intensity. The recognition and correction of pain behaviours and concomitant mood disorders is necessary to optimise potential benefits derived from conventional medical/surgical treatments. [26] [11] Targeted psychological therapies such as Cognitive Behavioural Therapy have proven effective at reducing pain catastrophization. [11] Additionally, the persistent and pervasive nature of chronic pain requires patients to make adjustments to learn to live with their disease by implementing effective coping strategies. Inclusion of behavioural interventions that promote protective psychological factors and coping mechanisms, should be considered in multifaceted treatment programmes. Active Pain Coping (APC) and Acceptance and Commitment Therapy (ACT) are beneficial in cultivating traits such as resilience and self-efficacy. [27] [28]

Findings from this meta-synthesis will ensure that patient priorities, as key stakeholders, are reflected in outcomes reported by future studies evaluating interventions for chronic pelvic pain.