Background & Aims
Chronic pelvic pain (CPP) is a common condition in UK primary care, with presentation and incident rates being similar to asthma and back pain (1,2). Numerous treatment approaches are utilised in the treatment of CPP (3). Treatment selection and pathways often vary depending on the availability of resources, and specialists and thus variation exists in the management of CPP in different geographical locations.
To better inform treatment delivery it is important to understand what people want and what they currently get in terms of treatment. An online survey can reach people with many different social demographic characteristics that can aid an understanding of treatment across different social and geographic backgrounds (4). This study aimed to conduct a social media survey to understand: i) what treatment approaches people have received and their treatment experiences, ii) what people want and value as part of their treatment.
Methods
An online survey was designed by a pelvic pain physiotherapist/researcher in conjunction with persons with CPP (n=4) and a health psychologist.
Questions captured information relating to:
i) Demographics & pain, an adapted version of the STarT Back tool was included to understand how participants could be triaged to treatments based on physical, psychosocial and psychological risk factors
ii) a) Treatments received, perceived benefit, and b) reflections regarding treatment experience
iii) What people want, a) what would effective treatment mean, and b) what is important to understand about their condition and treatment
The survey was posted for two months (May & June 2023) on various social media platforms and promoted via charities, support groups and professional bodies.
Responses for persons who completed ?50% of survey questions were included in the data analysis. Mean responses were used to statistically analyse the data and thematic analysis for open-ended questions.
Results
897/1279 (70%) completed ?50% of questions.
i) 94% UK residents, age 32.7 (range 16-79), pain intensity 6.12 (SD 1.78), pain duration 10.4 years, time since diagnosis 6.4 years, 63% endometriosis. Adapted STarT Back, total= 5.97 (SD 2.18), subscale= 3.01(1.51), 40% medium risk, 45% high risk.
ii) a) First point of contact GP (96%), then Gynaecology (93%), with substantial variation in the course of care thereafter. Most received treatments: medications 86% (beneficial during flare-ups), hormonal treatments 69% (benefit via regulation of menstruation) and surgery 66% (temporary pain reduction, reduced efficacy when repeated). b) Satisfaction with received care 27%, health professionals listened 31%, & gained information that helped manage pain 29%.
iii) a) Pain reduction 56%, improved QoL 42%, to feel supported 2%. b) major themes: Validation (including patients’ & clinicians’ understanding/education), management (including self-management and quality of life) & treatment options.
Conclusions
The large response rate observed by our 2-month online survey suggests that treatment of CPP is relevant to a large UK public audience (n=1279). Responses indicate that many women are living with moderate intensity CPP (6.12, SD 1.78) and suffer with CPP for 4 years before receiving a diagnosis. This represents a significant delay for women receiving appropriate support in managing CPP, which has also been reported elsewhere (5). Using a STarT Back tool modified for CPP indicates that a large proportion of respondents would benefit from pain education and physically and psychologically informed approaches to improve treatment outcomes. However, results indicate few respondents received such approaches and treatment journeys were highly variable with only 29% receiving information relating to pain management. These results and low satisfaction rates support the need to consider how treatment can be improved. This should involve integration of key themes identified by survey respondents.
References
1.Latthe P, Latthe M, Say L, Gülmezoglu M, Khan KS. WHO systematic review of prevalence of chronic pelvic pain: A neglected reproductive health morbidity. BMC Public Health. 2006;6(177):1-7. doi:10.1186/1471-2458-6-177
2.Zondervan KT, Yudkin PL, Vessey MP, Dawes MG, Barlow DH, Kennedy SH. Prevalence and incidence of chronic pelvic pain in primary care: evidence from a national general practice database. BJOG. 1999;106(11):1149-1155. doi:10.1111/j.1471-0528.1999.tb08140.x
3.Mardon AK, Leake HB, Szeto K, et al. Treatment recommendations for the management of persistent pelvic pain: a systematic review of international clinical practice guidelines. BJOG. 2022;129(8):1248-1260. doi:10.1111/1471-0528.17064
4.Wright KB. Researching Internet-Based Populations: Advantages and Disadvantages of Online Survey Research, Online Questionnaire Authoring Software Packages, and Web Survey Services. Journal of Computer-Mediated Communication. 2005;10(3):JCMC1034-JCMC1034. https://doi.org/10.1111/j.1083-6101.2005.tb00259.x
5.Jan H, Shakir F, Haines P. Diagnostic Delay for Superficial and Deep Endometriosis in the United Kingdom: A First Quantitative Study. Invasive Gyecol. 2014;21(6):S127.
6.Corte L della, Filippo C di, Gabrielli O, et al. The Burden of Endometriosis on Women’s Lifespan: A Narrative Overview on Quality of Life and Psychosocial Wellbeing. Int J Environ Res Public Health. 2020;17(13):4683. doi:10.3390/ijerph17134683
7.Bhide S, Flyckt R, Yao M. Long-term impact of chronic pelvic pain on quality of life in women with and without endometriosis. Clin Exp Obstet Gynecol. 2021;48(4):851-859. doi:https://dx.doi.org/10.31083/j.ceog4804135
8.Simoens S, Dunselman G, Dirksen C, et al. The burden of endometriosis: costs and quality of life of women with endometriosis and treated in referral centres-of-illness / quality of life / international / multi-centre. Human Reproduction. 2012;27(5):1292-1299. doi:10.1093/humrep/des073
Presenting Author
Alexandra Waddington
Poster Authors
selina johnson
PhD, MSc, BSc (Hons)
The Walton Centre NHS trust
Lead Author
Dharani Hapangama BSc (Hons)
MBChB
Department of Women’s and children’s health, ILCMS, University of Liverpool
Lead Author
Katy Vincent DPhil BSc MBBS MRCOG
University of Oxford
Lead Author
Emma Evans BSc (Hons)
DClin Psych
Oxford University Hospital
Lead Author
Topics
- Specific Pain Conditions/Pain in Specific Populations: Abdominal and Pelvic Pain