The cost of translational gaps for people with pelvic pain

By Timothy Cocks Pain awareness 18 May 2021

May is pelvic pain awareness month, and it is our privilege to have Amelia Mardon, PhD candidate with the Body in Mind Research Group, share this important post with us. Our thanks to Amelia.

Pelvic pain awareness month

May – what a great time to talk all things pelvic pain! May is pelvic pain awareness month, and here down under (pardon the pun), pelvic pain affects around one in five women and one in 12 men(1). Although, I acknowledge these numbers do not capture the full impact because pelvic pain does not discriminate based on gender and is very much prevalent within the transgender and gender diverse community.

With such high a prevalence, you would think pelvic pain would be a priority in terms of funding, optimising treatment, and improving patient outcomes. Unfortunately, this is currently not the case. As part of my PhD studies with the Body in Mind Research Group at University of South Australia I conducted a systematic review of clinical guidelines for the management of persistent pelvic pain(2). The findings of this review clearly reinforced the idea that there are important research and practice gaps still evident throughout each step in the pathway towards optimal care and better outcomes for people with persistent pelvic pain.

Here are five translational gaps costing people with persistent pelvic pain:

Infographic by Amelia Mardon. Click image for larger version

1. Pelvic health is underfunded

Persistent pelvic pain is coupled with a large financial burden, costing Australia an estimated AU$9.5 billion per year for endometriosis alone (3). Despite this, pelvic pain remains largely underfunded. This May, the Australian Government announced a $354 million package to support women’s health over the next four years. However, only (and in no way is this an ungrateful ‘only’) $21.6 million of this package has been allocated towards all other ‘women’s health initiatives’, including pelvic pain. Whilst this is a step forward for women’s health care, funding for further research into pelvic pain has been excluded from this budget – something that is desperately needed. Last year the Australian government did provide considerable funding towards nine endometriosis research projects. However, these announcements have only now become more mainstream following decades of advocacy over the virtually non-existent funding pelvic health has previously received. Being such a prevalent and costly health concern, funding for pelvic pain is a necessity. I can only hope the pelvic health field is continuously allocated the resources required to start a ripple effect towards improving patient outcomes.

2. Lack of high-quality empirical research

With a lack of funding allocated towards pelvic pain research comes a substantial decrease in the quality of research performed. Evident in our review of guidelines, many of the recommendations were derived from low-quality studies. In addition, over 40% of recommendations across the guidelines were either not supported with a level of evidence or based on expert opinion (predominantly coming from solely OBGYNs). This means almost half of the recommendations for pelvic pain management do not specify what type of evidence has been used to form the recommendation or have not been proven effective through empirical research, but rather are based on anecdotal evidence. I question, how are we meant to make positive progress from research to clinical practice when the foundations of this pathway have these deep cracks?

3. Insufficient research investigating psychosocial interventions

In addition to the many physical symptoms people with pelvic pain experience, the psychological and social impact can’t be denied. Around 60-80% of people with persistent pelvic pain experience depression (4,5) and over 65% have reported to experience anxiety (4). On top of this, females with pelvic pain experience greater levels of catastrophising, loneliness, and lower quality of life. (6,7). Despite these statistics, investigations into interventions that address these psychosocial components, including pelvic physiotherapy, are lacking. Rather, most research conducted focuses on biomedical interventions, such as surgery and medications. By limiting our investigations into pelvic pain in this way, combined with the often outdated ways of thinking about the persistent pain experience, we are cutting ourselves off from a world of other avenues waiting to be explored.

4. Heavy focus on biomedical interventions for pelvic pain management

So, what happens when we only know about biomedical interventions? We believe they are the only solution and therefore the only thing to recommend in clinical practice. Pelvic pain guidelines lack the breadth and depth of guidelines for other persistent pain conditions, in particular for addressing psychosocial components (8). Of the 15 guidelines included in our review, all recommended surgery and/or medical interventions. Conversely, psychology was recommended in 11 guidelines and only 7 recommended physiotherapy. Pelvic pain guidelines have even stated that “physiotherapy and psychological pain management approaches are definitely effective. However, … there is no evidence for these approaches” (9). There is a real disconnect between what we know now about the persistent pelvic pain experience and what we currently to do help people with pelvic pain; a major ball and chain dragging the field behind.

5. Sub-optimal patient outcomes

If you have gotten this far into the article, it probably comes as no surprise that people with persistent pelvic pain often experience unfavourable outcomes. Recovery rates for pelvic pain have been recorded as low as 20-25% following standard treatment (10, 11). In addition, 20% of patients experience no improvement or worsening of symptoms following laparoscopic removal of endometriosis (12), and over 60% of patients have repeat surgery, often within two years (13). Evan a quick look on online pelvic pain support groups reiterate these statistics and demonstrate a consistent cry for help. People are undergoing multiple operations,  taking ample medications, but feeling no better off – rather more frustrated, confused, and disappointed. Is the failure of stepping back from a biomedical lens to adopting a biopsychosocial approach playing a part in driving unfavourable outcomes for people with pelvic pain? My instincts say yes.

The golden question

If you are a clinician facilitating biopsychosocial interventions for people with pelvic pain, you may find yourself asking what are you supposed to do if there is no proof or guidance for anything? Does this mean anything goes and we have a license to just do whatever? This is not a new problem to those with years of experience working with people with persistent pelvic pain. I’m very grateful for discussions with Dr. Sandy Hilton (find her on Twitter @SandyHiltonPT) who acknowledged these problems, but also offered hope. Dr Hilton suggested that while there is no clear path, clinicians can use their training, logic, an understanding of biological plausibility within a framework of a modern understanding of the complexity of pain, and constant clinical reasoning to find the best way forwards for people with persistent pelvic pain, and an improvement in their outcomes. Vitally, as clinicians we also need to be aware that as this field of practice develops, we need to be open to learning, growing, and changing.

At this point in time, I think we can be optimistic that we are entering a new era for our understanding and treatment of pelvic pain; an era where these challenges are being acknowledged and attempts to address them are gaining traction – the first steps to overcoming translational gaps for people with pelvic pain.

 

– Amelia Mardon

 

Amelia Mardon is a PhD candidate with the Body in Mind Research group at the University of South Australia. After being diagnosed with endometriosis at 14, she has developed a passion for all things pelvic pain and turned this into the focus of her research – optimising pain science education for females with persistent pelvic pain.

 

References

  1. Pain Australia. Pelvic Pain, <https://www.painaustralia.org.au/about-pain/forms-of-pain/pelvic#:~:text=Pelvic%20pain%20affects%20up%20to,and%20one%20in%2012%20men.>.
  2. Mardon, A., et al. 2021, ‘What is recommended for the management of persistent pelvic pain? A systematic review of international clinical practice guidelines’, Submitted for publication.
  3. Armour, M., et al. 2019, ‘The cost of illness and economic burden of endometriosis and chronic pelvic pain in Australia: A national online survey’, PloS one, vol. 14, no. 10, pp. e0223316-e0223316.
  4. Siqueira-Campos, V.M.E., et al. 2019, ‘Anxiety and depression in women with and without chronic pelvic pain: prevalence and associated factors’, Journal of pain research, vol. 12, pp. 1223-1233.
  5. Lorençatto, C., et al. 2006, ‘Depression in women with endometriosis with and without chronic pelvic pain’, Acta Obstet Gynecol Scand, vol. 85, no. 1, pp. 88-92.
  6. Sewell, M., et al. 2018, ‘Chronic pelvic pain – pain catastrophizing, pelvic pain and quality of life’, Scandinavian Journal of Pain, vol. 18, no. 3, pp. 441-448.
  7. Stout, M.E., S.M. Meints, and A.T. Hirsh 2018, ‘Loneliness Mediates the Relationship Between Pain During Intercourse and Depressive Symptoms Among Young Women’, Archives of sexual behavior, vol. 47, no. 6, pp. 1687-1696.
  8. Lin, I., et al. 2020, ‘What does best practice care for musculoskeletal pain look like? Eleven consistent recommendations from high-quality clinical practice guidelines: systematic review’, British Journal of Sports Medicine, vol. 54, no. 2, p. 79.
  9. (UK), N.G.A. 2017, Endometriosis: diagnosis and management, London, UK.
  10. Weijenborg, P.T.M., et al. 2007, ‘Clinical course of chronic pelvic pain in women’, PAIN, vol. 132, pp. S117-S123.
  11. Souza, P.P., et al. 2011, ‘Qualitative research as the basis for a biopsychosocial approach to women with chronic pelvic pain’, J Psychosom Obstet Gynaecol, vol. 32, no. 4, pp. 165-72.
  12. Abbott, J., et al. 2004, ‘Laparoscopic excision of endometriosis: A randomized, placebo-controlled trial’, Fertility and Sterility, vol. 82, no. 4, pp. 878-884.
  13. Saraswat, L., et al. 2018, ‘Impact of endometriosis on risk of further gynaecological surgery and cancer: a national cohort study’, BJOG: An International Journal of Obstetrics & Gynaecology, vol. 125, no. 1, pp. 64-72.

 

Looking for related posts? Professor Sonia Grover has written a series of posts on Period Pain (1, 2, 3, 4 and 5) and a reflection on Women’s Pain here. We also have a post from Hayley Leake introducing the Pelvic Pain Impact Questionnaire

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