Unmet Needs of Australians in Endometriosis Research: A Qualitative Study of Research Priorities, Drivers, and Barriers to Participation in People with Endometriosis
Abstract
:1. Introduction
2. Materials and Methods
2.1. Participants
2.2. Procedure
2.3. Analysis
3. Results
3.1. Unmet Research Needs: Diagnosis, Treatment, and Cure
“I think a bit more research into that [diagnosis of endometriosis] would be good for when a woman just says she’s got pelvic pain—I’ve just been told so many times: ‘Oh, you’ve got a UTI [urinary tract infection], you’ve got gonorrhoea, you’ve got all these things’, and then the tests comes back and they: ‘Oh, you don’t have any of that’. It’s hard.”(Wendy, ≥35)
“I also remember leading into my first surgery that I was also really nervous that I was going to be outlaying all of these costs of the surgery and all of those associated things—only to not know, if I was able going to be getting a diagnosis of any sort. I remember waking up in surgery and asking: ‘Did they find anything?’ Because I would have felt guilty spending our money on all of that, only to find out that, no, there was nothing there.”(Lana, 25–34)
“I didn’t get diagnosed ‘till I was 34, and that was after years of infertility and pregnancy loss. If I had known about this 10 years ago because someone did a blood test or a scan of some sort, it could have saved me all of that trauma.”(Jan, 25–34)
“There is enough people—there’s one in ten women, so there’s a lot people presenting with all these conditions, there needs to be something that they can do, a test other than just the laparoscopy. If they could research into that so you could see that, yes, you are a candidate for endometriosis, so now let’s do a laparoscopy, but at least be listened to prior to just have the laparoscopy.”(Gloria, ≥35)
“My husband and I want to try and have children, but it worries you coming off the pill, because you know anytime you have a period, you usually end up flaring and winding up in ED or you spend three days on so many painkillers that you then can’t go to the toilet and it just ends up being a cyclical, terrible time. I think that there needs to be other ways and better first line treatments than just whacking every person with endometriosis on some form of contraception.”(Sakura, 25–34)
“I really wish that it [medicinal cannabis] was available, because I’m sick to death of taking medication that makes you feel terrible, that is highly processed and highly, highly chemical-base substances stripping your body, where at least cannabis comes from a natural derived product.”(Lena, 18–24)
“I’d really like to find out what exactly causes it, although that’s not gonna be easy, and just a genetic component, whether or not it gets passed down to your children and your grandchildren and if there is anything, we can do.”(Gina, 25–34)
3.2. Motivators and Barriers to Participation in Endometriosis Research
“I personally would go through heaven and hell to find something. I would take that placebo drug. I hate yoga. I would do yoga, I’ll go jogging for an hour every single day, if it meant that in the future, my daughter, there’s something there for her.”(Angela, 18–24)
“If it was in a handy little app and it sent you a notification every day and it was super easy, tap-tap-tap, that would be fine. But if you’ve got to remember and log-in somewhere that’s clunky, then likely that you’d forget or not feel like it.”(Carolyn, 18–24)
“I think it [the participation in a research project] would really depend like for me, it would depend on what’s going on in my life and what the study is measuring for me, it would be dependent on whether I want to be a part of it but I’m pretty likely to.”(Pam, 25–34)
“If you’re being really super practical about it, I would think, ‘How much is it helping me the thing you’re asking me to do’, and also what’s the compensation. If it’s gonna be something that’s really time consuming, I might think, ‘well, I’m getting a gift card that’s paying my groceries a week’, so I’ll be able to do that. But if there’s nothing in it for me and it might be a placebo drug I’m on, it’s just gonna feel like a waste of time. I want to be benevolent and help the future of research but I’m a selfish human.”(Diana, 18–24)
“I know that I’d lose my registration, so making sure that it was legal. When I’m drug-tested at work, making sure that I either had some legal documentation to say, ‘I’d take this for chronic health condition’, or whether it didn’t show up in that drug test, I know that sounds hilarious, but just having some form of back-up or even for instance, if we were to go onto this study with medicinal cannabis, having a letter from the university or from medical practitioner saying, ‘I am currently doing a clinical trial for this, this and this reason’, the clinical trial is on medicinal cannabis, whatever reason. Just making sure my bum was covered at work is a big thing for me.”(Lena, 18–24)
4. Discussion
Strengths and Limitations
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
Abbreviations
CAM | Complementary and alternative medicine |
CBD | Cannabidiol |
ED | Emergency department |
TENS | Transcutaneous electrical nerve stimulation |
References
- Rowlands, I.J.; Abbott, J.A.; Montgomery, G.W.; Hockey, R.; Rogers, P.; Mishra, G.D. Prevalence and incidence of endometriosis in Australian women: A data linkage cohort study. BJOG Int. J. Obstet. Gynaecol. 2021, 128, 657–665. [Google Scholar] [CrossRef]
- Seear, K. The etiquette of endometriosis: Stigmatisation, menstrual concealment and the diagnostic delay. Soc. Sci. Med. 2009, 69, 1220–1227. [Google Scholar] [CrossRef] [PubMed]
- Rubinsky, V.; Gunning, J.N.; Cooke-Jackson, A. “I Thought I Was Dying:” (Un)Supportive Communication Surrounding Early Menstruation Experiences. Health Commun. 2020, 35, 242–252. [Google Scholar] [CrossRef] [PubMed]
- Berker, B.; Seval, M. Problems with the diagnosis of endometriosis. Women’s Health 2015, 11, 597–601. [Google Scholar] [CrossRef] [PubMed]
- Armour, M.; Sinclair, J.; Ng, C.H.M.; Hyman, M.S.; Lawson, K.; Smith, C.A.; Abbott, J. Endometriosis and chronic pelvic pain have similar impact on women, but time to diagnosis is decreasing: An Australian survey. Sci. Rep. 2020, 10, 16253. [Google Scholar] [CrossRef]
- O’Hara, R.; Rowe, H.; Fisher, J. Managing endometriosis: A cross-sectional survey of women in Australia. J. Psychosom. Obstet. Gynecol. 2022, 43, 265–272. [Google Scholar] [CrossRef]
- Melis, I.; Litta, P.; Nappi, L.; Agus, M.; Melis, G.B.; Angioni, S. Sexual Function in Women with Deep Endometriosis: Correlation with Quality of Life, Intensity of Pain, Depression, Anxiety, and Body Image. Int. J. Sex. Health 2015, 27, 175–185. [Google Scholar] [CrossRef]
- Van Niekerk, L.M.; Schubert, E.; Matthewson, M. Emotional intimacy, empathic concern, and relationship satisfaction in women with endometriosis and their partners. J. Psychosom. Obstet. Gynecol. 2021, 42, 81–87. [Google Scholar] [CrossRef]
- Armour, M.; Lawson, K.; Wood, A.; Smith, C.A.; Abbott, J. The cost of illness and economic burden of endometriosis and chronic pelvic pain in Australia: A national online survey. PLoS ONE 2019, 14, e0223316. [Google Scholar] [CrossRef]
- Horne, A.W.; Saunders, P.T.K.; Abokhrais, I.M.; Hogg, L. Top ten endometriosis research priorities in the UK and Ireland. Lancet 2017, 389, 2191–2192. [Google Scholar] [CrossRef]
- NIH Report. Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC). Available online: https://report.nih.gov/funding/categorical-spending#/ (accessed on 2 October 2022).
- As-Sanie, S.; Black, R.; Giudice, L.C.; Gray Valbrun, T.; Gupta, J.; Jones, B.; Laufer, M.R.; Milspaw, A.T.; Missmer, S.A.; Norman, A.; et al. Assessing research gaps and unmet needs in endometriosis. Am. J. Obstet. Gynecol. 2019, 221, 86–94. [Google Scholar] [CrossRef] [PubMed]
- Australian Government Department of Health. National Action Plan for Endometriosis. Available online: https://www.health.gov.au/sites/default/files/national-action-plan-for-endometriosis.pdf (accessed on 12 January 2019).
- Armour, M.; Avery, J.; Leonardi, M.; Van Niekerk, L.; Druitt, M.L.; Parker, M.A.; Girling, J.A.; McKinnon, B.; Mikocka-Walus, A.; Ng, C.H.M.; et al. Lessons from implementing the Australian National Action Plan for Endometriosis. Reprod. Fertil. 2022, 3, C29–C39. [Google Scholar] [CrossRef] [PubMed]
- Vercellini, P.; Meana, M.; Hummelshoj, L.; Somigliana, E.; Viganò, P.; Fedele, L. Priorities for endometriosis research: A proposed focus on deep dyspareunia. Reprod. Sci. 2011, 18, 114–118. [Google Scholar] [CrossRef] [PubMed]
- Greene, A.D.; Lang, S.A.; Kendziorski, J.A.; Sroga-Rios, J.M.; Herzog, T.J.; Burns, K.A. Endometriosis: Where are we and where are we going? Reproduction 2016, 152, R63–R78. [Google Scholar] [CrossRef]
- Rogers, P.A.W.; Adamson, G.D.; Al-Jefout, M.; Becker, C.M.; D’Hooghe, T.M.; Dunselman, G.A.J.; Fazleabas, A.; Giudice, L.C.; Horne, A.W.; Hull, M.L.; et al. Research Priorities for Endometriosis: Recommendations from a Global Consortium of Investigators in Endometriosis. Reprod. Sci. 2017, 24, 202–226. [Google Scholar] [CrossRef]
- AWMF Online. Diagnosis and Therapy of Endometriosis. Guideline of the DGGG, SGGG and OEGGG (S2k-Level, AWMF Registry No. 045/015. Available online: http://www.awmf.org/leitlinien/detail/ll/015-045.html (accessed on 9 September 2020).
- Boote, J.; Telford, R.; Cooper, C. Consumer involvement in health research: A review and research agenda. Health Policy 2002, 61, 213–236. [Google Scholar] [CrossRef]
- Pandey, S.; Porter, M.; Bhattacharya, S. What women want from women’s reproductive health research: A qualitative study. Health Expect. 2015, 18, 2606–2615. [Google Scholar] [CrossRef]
- Brady, P.C.; Horne, A.W.; Saunders, P.T.K.; Thomas, A.M.; Missmer, S.A.; Farland, L.V. Research priorities for endometriosis differ among patients, clinicians, and researchers. Am. J. Obstet. Gynecol. 2020, 222, 630–632. [Google Scholar] [CrossRef]
- Armour, M.; Cave, A.E.; Schabrun, S.M.; Steiner, G.Z.; Zhu, X.; Song, J.; Abbott, J.; Smith, C.A. Manual Acupuncture plus Usual Care Versus Usual Care Alone in the Treatment of Endometriosis-Related Chronic Pelvic Pain: A Randomized Controlled Feasibility Study. J. Altern. Complement. Med. 2021, 27, 841–849. [Google Scholar] [CrossRef]
- Erlingsson, C.; Brysiewicz, P. A hands-on guide to doing content analysis. Afr. J. Emerg. Med. 2017, 7, 93–99. [Google Scholar] [CrossRef]
- Roller, M.R. A quality approach to qualitative content analysis: Similarities and differences compared to other qualitative methods. Forum Qual. Soc. Res. 2019, 20, 1–21. [Google Scholar] [CrossRef]
- Armour, M.; Ciccia, D.; Yazdani, A.; Rombauts, L.; Van Niekerk, L.; Schubert, R.; Abbott, J. Endometriosis research priorities in Australia. Aust. N. Z. J. Obstet. Gynaecol. 2023, 63, 594–598. [Google Scholar] [CrossRef] [PubMed]
- Evans, S.; Villegas, V.; Dowding, C.; Druitt, M.; O’Hara, R.; Mikocka-Walus, A. Treatment use and satisfaction in Australian women with endometriosis: A mixed-methods study. Intern. Med. J. 2021, 52, 2096–2106. [Google Scholar] [CrossRef] [PubMed]
- Keeney, S.; Hasson, F.; McKenna, H. The Delphi Technique in Nursing and Health Research; Wiley-Blackwell: Chichester, UK, 2011; ISBN 9781444392029. [Google Scholar]
- Jessup, R.L.; Osborne, R.H.; Buchbinder, R.; Beauchamp, A. Using co-design to develop interventions to address health literacy needs in a hospitalised population. BMC Health Serv. Res. 2018, 18, 989. [Google Scholar] [CrossRef]
- Sanders, E.B.-N.; Stappers, P.J. Co-creation and the New Landscapes of Design. Co-Design 2008, 4, 5–18. [Google Scholar] [CrossRef]
- Andersson, N.; Nava-Aguilera, E.; Arosteguí, J.; Morales-Perez, A.; Suazo-Laguna, H.; Legorreta-Soberanis, J.; Hernandez-Alvarez, C.; Fernandez-Salas, I.; Paredes-Solís, S.; Balmaseda, A.; et al. Evidence based community mobilization for dengue prevention in Nicaragua and Mexico (Camino Verde, the Green Way): Cluster randomized controlled trial. BMJ 2015, 351, h3267. [Google Scholar] [CrossRef] [PubMed]
- Mitchell, C.; Burke, K.; Halford, N.; Rothwell, K.; Darley, S.; Woodward-Nutt, K.; Bowen, A.; Patchwood, E. Value and learning from carer involvement in a cluster randomised controlled trial and process evaluation—Organising Support for Carers of Stroke Survivors (OSCARSS). Res. Involv. Engagem. 2020, 6, 21. [Google Scholar] [CrossRef] [PubMed]
- Tay, B.S.J.; Cox, D.N.; Brinkworth, G.D.; Davis, A.; Edney, S.M.; Gwilt, I.; Ryan, J. Co-Design Practices in Diet and Nutrition Research: An Integrative Review. Nutrients 2021, 13, 3593. [Google Scholar] [CrossRef]
- Bergqvist, A.; Bergh, T.; Hogström, L.; Mattsson, S.; Nordenskjöld, F.; Rasmussen, C. Effects of triptorelin versus placebo on the symptoms of endometriosis. Fertil. Steril. 1998, 69, 702–708. [Google Scholar] [CrossRef]
- Wright, J.T.; Redwine, D.B. Treatment of endometriosis—A special skills module only? Gynecol. Surg. 2004, 1, 67–68. [Google Scholar] [CrossRef]
- Kuivasaari, P.; Hippeläinen, M.; Anttila, M.; Heinonen, S. Effect of endometriosis on IVF/ICSI outcome: Stage III/IV endometriosis worsens cumulative pregnancy and live-born rates. Hum. Reprod. 2005, 20, 3130–3135. [Google Scholar] [CrossRef] [PubMed]
- De Graaff, A.A.; Dirksen, C.D.; Simoens, S.; De Bie, B.; Hummelshoj, L.; D’Hooghe, T.M.; Dunselmann, G.A.J. Quality of life outcomes in women with endometriosis are highly influenced by recruitment strategies. Hum. Reprod. 2015, 30, 1331–1341. [Google Scholar] [CrossRef] [PubMed]
Characteristics | n (%) | |
---|---|---|
Age (years) | 18–24 | 7 (23) |
25–34 | 14 (47) | |
≥35 | 9 (30) | |
Employment status | Full time (≥35 h/week) | 18 (60) |
Part time (<35 h/week) | 7 (23) | |
Self-employed | 2 (7) | |
Studying and working part time | 1 (3) | |
Not employed, looking for work | 1 (3) | |
Disabled, not able to work | 1 (3) | |
Relationship status | Married | 19 (63) |
Living together, not married | 6 (20) | |
Single, never married | 5 (17) | |
Children | No children | 25 (83) |
1 | 1 (3) | |
2 | 3 (10) | |
3 | 1 (3) | |
Ethnicity | Caucasian | 24 (80) |
Aboriginal or Torres Strait Islander | 1 (3) | |
European (Western or Northern) | 2 (7) | |
Southeast Asian | 1 (3) | |
Mixed (Caucasian and others) | 2 (7) | |
Highest education/degree | Secondary school | 5 (17) |
Technical college or other college | 9 (30) | |
University undergraduate | 12 (40) | |
University diploma | 1 (3) | |
University postgraduate (master’s or Ph.D. *) | 3 (10) |
Research Priorities | |
---|---|
Diagnosis | Development of a non-invasive diagnostic tool |
Treatment: endometriosis treatment options to manage symptoms |
|
| |
| |
Treatment options for emotional distress | |
Cure | Research on causes of endometriosis for cure development |
Motivators | Barriers |
---|---|
Helping yourself:
| Time commitments that do not fit into the schedule; possible time commitments: 1–4 times a week for 30–60 min, flexible |
Helping others:
| Localisation: At home preferably and more frequently, otherwise locally |
Research topic: according to personal aims, believes, and former experiences | Safety: must be ensured Anticipation of negative impact on pain symptoms |
Tracking: user-friendly, reminder, fast to complete | Trying to conceive |
Blood test: close by, flexible, obtain the results of the blood tests | |
Financial incentive: not required for all patient groups; depending on cost and effort | |
Dissemination: through support groups, social media, university websites, and health centres |
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© 2023 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
Share and Cite
Giese, N.; Gilbert, E.; Hawkey, A.; Armour, M. Unmet Needs of Australians in Endometriosis Research: A Qualitative Study of Research Priorities, Drivers, and Barriers to Participation in People with Endometriosis. Medicina 2023, 59, 1655. https://doi.org/10.3390/medicina59091655
Giese N, Gilbert E, Hawkey A, Armour M. Unmet Needs of Australians in Endometriosis Research: A Qualitative Study of Research Priorities, Drivers, and Barriers to Participation in People with Endometriosis. Medicina. 2023; 59(9):1655. https://doi.org/10.3390/medicina59091655
Chicago/Turabian StyleGiese, Nora, Emilee Gilbert, Alexandra Hawkey, and Mike Armour. 2023. "Unmet Needs of Australians in Endometriosis Research: A Qualitative Study of Research Priorities, Drivers, and Barriers to Participation in People with Endometriosis" Medicina 59, no. 9: 1655. https://doi.org/10.3390/medicina59091655