Treatment preferences for medication or surgery in patients with deep endometriosis and bowel involvement – a discrete choice experiment

Metzemaekers, Jeroen; Marle, M.E. van den Akker-van; Sampat, Jonathan; Smeets, M. J. G. H.; English, James; Thijs, Elke; Maas, Jacques W.M.; Jansen, Frank Willem; Essers, Brigitte

doi:10.1111/1471-0528.17053

Cited by 3 publications

(1 citation statement)

References 32 publications

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“…Overall, there is limited information available in order to understand why patients ultimately choose medical or surgical treatment (Leonardi et al, 2020a), and the impact of clinician counselling, although likely, cannot currently be quantified. However, when complete, unbiased information is adequately provided and the alternative between medical therapy and surgery is presented equally, the potential harms of procedures for bowel infiltrating endometriosis have been found to be a determinant of patient preference (Metzemaekers et al, 2022).…”

Section: Medical or Surgical Treatment For Endometriosis-associated P...mentioning

confidence: 99%

Towards comprehensive management of symptomatic endometriosis: beyond the dichotomy of medical versus surgical treatment

Mijatovic,

Vercellini

2024

Human Reproduction

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Except when surgery is the only option because of organ damage, the presence of suspicious lesions, or the desire to conceive, women with endometriosis-associated pain often face a choice between medical and surgical treatment. In theory, the description of the potential benefits and potential harms of the two alternatives should be standardized, unbiased, and based on strong evidence, enabling the patient to make an informed decision. However, doctor’s opinion, intellectual competing interests, local availability of specific services and (mis)information obtained from social media, and online support groups can influence the type of advice given and affect patients’ choices. This is compounded by the paucity of robust data from randomized controlled trials, and the anxiety of distressed women who are eager to do anything to alleviate their disabling symptoms. Vulnerable patients are more likely to accept the suggestions of their healthcare provider, which can lead to unbalanced and physician-centred decisions, whether in favour of either medical or surgical treatment. In general, treatments should be symptom-orientated rather than lesion-orientated. Medical and surgical modalities appear to be similarly effective in reducing pain symptoms, with medications generally more successful for severe dysmenorrhoea and surgery more successful for severe deep dyspareunia caused by fibrotic lesions infiltrating the posterior compartment. Oestrogen–progestogen combinations and progestogen monotherapies are generally safe and well tolerated, provided there are no major contraindications. About three-quarters of patients with superficial peritoneal and ovarian endometriosis and two-thirds of those with infiltrating fibrotic lesions are ultimately satisfied with their medical treatment although the remainder may experience side effects, which may result in non-compliance. Surgery for superficial and ovarian endometriosis is usually safe. When fibrotic infiltrating lesions are present, morbidity varies greatly depending on the skill of the individual surgeon, the need for advanced procedures, such as bowel resection and ureteral reimplantation, and the availability of expert colorectal surgeons and urologists working together in a multidisciplinary approach. The generalizability of published results is adequate for medical treatment but very limited for surgery. Moreover, on the one hand, hormonal drugs induce disease remission but do not cure endometriosis, and symptom relapse is expected when the drugs are discontinued; on the other hand, the same drugs should be used after lesion excision, which also does not cure endometriosis, to prevent an overall cumulative symptom and lesion recurrence rate of 10% per postoperative year. Therefore, the real choice may not be between medical treatment and surgery, but between medical treatment alone and surgery plus postoperative medical treatment. The experience of pain in women with endometriosis is a complex phenomenon that is not exclusively based on nociception, although the role of peripheral and central sensitization is not fully understood. In addition, trauma, and especially sexual trauma, and pelvic floor disorders can cause or contribute to symptoms in many individuals with chronic pelvic pain, and healthcare providers should never take for granted that diagnosed or suspected endometriosis is always the real, or the sole, origin of the referred complaints. Alternative treatment modalities are available that can help address most of the additional causes contributing to symptoms. Pain management in women with endometriosis may be more than a choice between medical and surgical treatment and may require comprehensive care by a multidisciplinary team including psychologists, sexologists, physiotherapists, dieticians, and pain therapists. An often missing factor in successful treatment is empathy on the part of healthcare providers. Being heard and understood, receiving simple and clear explanations and honest communication about uncertainties, being invited to share medical decisions after receiving detailed and impartial information, and being reassured that a team member will be available should a major problem arise, can greatly increase trust in doctors and transform a lonely and frustrating experience into a guided and supported journey, during which coping with this chronic disease is gradually learned and eventually accepted. Within this broader scenario, patient-centred medicine is the priority, and whether or when to resort to surgery or choose the medical option remains the prerogative of each individual woman.

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Section: Medical or Surgical Treatment For Endometriosis-associated P...mentioning

confidence: 99%

Towards comprehensive management of symptomatic endometriosis: beyond the dichotomy of medical versus surgical treatment

Mijatovic,

Vercellini

2024

Human Reproduction

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Treatment preferences for medication or surgery in patients with deep endometriosis and bowel involvement – a discrete choice experiment

Metzemaekers

Marle

Sampat

et al. 2021

BJOG

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To study the preferences of women with deep endometriosis (DE) with bowel involvement when they have to choose between conservative (medication) or surgical treatment. Design: Labelled discrete choice experiment (DCE).Setting: Dutch academic and non-academic hospitals and online recruitment. Population or Sample:A total of 169 women diagnosed with DE of the bowel.Methods: Baseline characteristics and the fear of surgery were collected. Women were asked to rank attributes and choose between hypothetical conservative or surgical treatment in different choice sets (scenarios). Each choice set offered different levels of all treatment attributes. Data were analysed by using multinomial logistic regression. Main Outcome Measures:The following attributes -effect on/risk of pain, fatigue, pregnancy, endometriosis lesions, mood swings, osteoporosis, temporary stoma and permanent intestinal symptoms -were used in this DCE.Results: In the ranking, osteoporosis was ranked with low importance, whereas in the DCE, a lower chance of osteoporosis was one of the most important drivers when choosing a conservative treatment. Women with previous surgery showed less fear of surgery compared with women without surgery. Low anterior resection syndrome was almost equally important for patients as the chance of pain reduction. Pain reduction had higher importance than improving fertility chances, even in women with desire for a future child. Conclusions:The risk of developing low anterior resection syndrome as a result of treatment is almost equally important as the reduction of pain symptoms. Women with previous surgery experience less fear of surgery compared with women without a surgical history.

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Comparing the treatment of endometriosis‐related pain by excision of endometriosis or hysterectomy: A multicentre prospective cohort study

Lewin,

Vashisht,

Hirsch

et al. 2024

BJOG

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ObjectiveTo compare the effectiveness of endometriosis excision alone to excision plus hysterectomy, with and without bilateral oophorectomy, for endometriosis‐related symptoms.DesignMulticentre prospective cohort.SettingEighty‐six specialist endometriosis centres.PopulationWomen undergoing rectovaginal endometriosis surgery between 2009 and 2021.MethodsWe performed multivariable regression with random effects for patient and centre, controlling for age, BMI, smoking, laparoscopic versus open approach and type of bowel surgery performed, with sensitivity analysis for loss to follow‐up.Main Outcome MeasuresPain scores, bowel symptoms and quality‐of‐life measures.ResultsCompared to endometriosis excision alone, women undergoing hysterectomy with conservation of ovaries had greater improvement in non‐cyclical pain (MD: 1.41/10, 95% CI: 1.03–1.78, p < 0.001), dyspareunia (MD: 1.12/10, 95% CI: 0.71–1.53, p < 0.001), back pain (MD: 1.29/10, 95% CI: 0.92–1.67, p < 0.001) and quality‐of‐life scores (MD: 8.77/100, 95% CI: 5.79–11.75, p < 0.001) at 24 months post‐operatively. Women undergoing hysterectomy with bilateral oophorectomy also had greater improvement in non‐cyclical pelvic pain (MD: 2.22/10, 95% CI: 1.80–2.63, p < 0.001), dyspareunia (MD: 1.05/10, 95% CI: 0.59–1.52, p < 0.001), back pain (MD: 1.18/10, 95% CI: 0.77–1.59, p < 0.001) and quality of life (MD: 12.41/100, 95% CI: 9.07–15.74, p < 0.001) at 24 months compared to endometriosis excision alone. Compared to hysterectomy with ovarian conservation, hysterectomy with bilateral oophorectomy was associated with greater improvement in non‐cyclical pelvic pain (MD: 0.81/10, 95% CI: 0.32–1.30, p = 0.001) at 24 months and quality of life (MD: 3.74/100, 95% CI: 0.56–6.92, p = 0.021) at 12 months, although this result was sensitive to loss to follow‐up.ConclusionsPatients who undergo endometriosis excision plus hysterectomy experience greater improvement in pain and quality of life compared to those who have endometriosis excision alone. There are additional benefits of bilateral oophorectomy with hysterectomy, although its value is less clear due to loss of follow‐up.

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Treatment preferences for medication or surgery in patients with deep endometriosis and bowel involvement – a discrete choice experiment

Cited by 3 publications

References 32 publications

Towards comprehensive management of symptomatic endometriosis: beyond the dichotomy of medical versus surgical treatment

Towards comprehensive management of symptomatic endometriosis: beyond the dichotomy of medical versus surgical treatment

Treatment preferences for medication or surgery in patients with deep endometriosis and bowel involvement – a discrete choice experiment

Comparing the treatment of endometriosis‐related pain by excision of endometriosis or hysterectomy: A multicentre prospective cohort study

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