Are you female? Do you know any females? Chances are, the majority of you are thinking ‘yes’. And chances are, the majority of those females you know have experienced pelvic pain.
Almost every woman will experience pain during menstruation (dysmenorrhoea) at some point during her life[1] – and usually it seems like some kind of uterus-driven sadistic rite of passage for teenagers blossoming into young women. For most women, dysmenorrhea largely disappears by the end of those teenage years as pubertal hormone processes settle down. For others, dysmenorrhea can extend well into their adult years, and other types of pelvic pain can also become apparent, such as endometriosis or vulvodynia. Unfortunately, up to 1 in 4 women experience persistent pelvic pain[2].
A clinician’s highest priority for treating women with pelvic pain is usually pain relief. However, patients often report that it is not only the intensity of the pain they find frustrating, but also the impact that their pain has on their physical, social, and psychological well-being[3].
Quality of life (QoL) measures aim to assess the impact that pain can have on a patient’s life; however, these tools have limitations in the clinic. For example, broad QoL tools don’t ask the nitty-gritty details that make pelvic pain so burdensome, such as questioning the impact of pain on a patient’s sexual activities. Other QoL tools target women with specific pelvic pain diagnoses, despite the fact that women with pelvic pain rarely present with just one type of pelvic pain. The other big problem with these tools is that they are often created by clinicians or researchers, rather than by those whose opinions matter most: women with pelvic pain!
We set out to resolve these issues and create a new tool for women with pelvic pain in our latest study, published in PAIN[4] We wanted to create a tool that assessed the impact of pelvic pain on the lives of women from their perspective, rather than ours. We aimed to make the tool easy to understand, use, and score.
Developing the PPIQ
In developing the questionnaire, we asked a large group of women with pelvic pain a very simple question: what aspects of your life are impacted by your pelvic pain? We then asked these women again and again, until they reached a consensus (not in a harassing way – the process we used was a Delphi survey). We then ranked their responses, and chose the top 10 responses to form the questions in the Pelvic Pain Impact Questionnaire (PPIQ). In the PPIQ, each of these 10 items is asked in the format of “Over the past month, how much has your pelvic pain impacted your….”, and women respond using a 5-point Likert scale from ‘Not at all’ to ‘A great deal’. We chose the ‘past month’ time period as we know that many pelvic pain conditions are ever-changing over a 28-day hormone cycle (such as dysmenorrhea).
Testing the PPIQ
Once the questionnaire was developed we asked an even LARGER group of women with pelvic pain to simply fill the PPIQ in, as well as give us some other details about themselves and their experience of pelvic pain, to see how the PPIQ performed. Using a Rasch analysis approach we found that the PPIQ performed well across women of all ages and across various diagnostic or symptomatic pelvic pain groups. That is not to say that all women responded to the questions within the PPIQ in the same way: we found that women with endometriosis were much more likely to report having problems with stomach/intestinal function and sleeping than women with vulvodynia were, and women with vulvodynia were much more likely to report having problems with relationships/intimacy and sitting for longer than 20 minutes than women with endometriosis were. Rasch analysis proved the PPIQ to be useful in all diagnostic groups.
During this testing process, many women chose not to respond to the PPIQ questions about using tampons and levels of sexual intimacy. This was not surprising, given that a large number of women don’t use tampons for reasons other than their pelvic pain – for example, if they are post-menopause or because it goes against their religious beliefs. Similarly, many women are not sexually active for reasons other than their pelvic pain, or perhaps felt reluctant to discuss their sexual lives with us. These two questions are excluded from the tallied score, and instead the PPIQ is measured on the other 8 items to give a total score out of 32.
The PPIQ is simple and fast to use, and can help clinicians understand the true impact of pelvic pain on the lives of their female patients. We recommend that the PPIQ be a starting point for generating conversation between patients and clinicians – the questionnaire may reveal some aspects about patients that need deeper exploration by clinicians. We feel as though the PPIQ could be used as an indication of patient improvement, with the idea that as a patient’s pain improves, the impact that their pain has on their life should decrease. However, we are yet to formally test this idea.
Unfortunately the tool is not applicable to men – but I am currently working on repeating this process in men with pelvic pain, so stay tuned!
I hope that all of you – whether clinician, researcher, or patient – will find this tool useful.
Jane Chalmers
Jane has an addiction to Vegemite, loves ice-cream, and tuna (but only dolphin-free!), and is doing her PhD with BiM. Her PhD is looking at the characteristics of localised, provoked vestibulodynia – a condition characterised by unexplained vulvar pain in women. Because just doing a PhD isn’t enough, while finishing off the final year of her PhD Jane is also teaching neurological physiotherapy to third year students at Western Sydney University.
References
[1] Latthe P, Latthe M, Say L, Gulmezoglu M, Khan K. WHO systematic review of prevalence of chronic pelvic pain: a neglected reproductive health morbidity. BMC Public Health 2006; 6(1): 177.
[2] Pitts MK, Ferris JA, Smith AMA, Shelley JM, Richters J. Prevalence and correlates of three types of pelvic pain in a nationally representative sample of Australian women. Medical Journal of Australia 2008; 189(3): 138-43.
[3] Fitzpatrick R, Davey C, Buxton M, Jones D. Patient-assessed outcome measures. Health services research methods London: BMJ Publishing Group 1998.
[4] Chalmers, K. Jane; Catley, Mark J.; Evans, Susan F.; Moseley, G. Lorimer (2017) Clinical assessment of the impact of pelvic pain on women. Pain: 158 (3): 498–504
Commissioning Editors: Carolyn Berryman and Neil O’Connell