What is my risk, doctor? How to convey disease risk and treatment effects

Bretthauer, Michael; Kalager, Mette

doi:10.1136/bmj-2022-075289

Cited by 6 publications

(5 citation statements)

References 14 publications

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“…The patient, not the surgeon, bears the burden of complications. Different women can accept different levels of risk, and they, not the physician, should decide how high to set the bar (Bretthauer and Kalager, 2023).…”

Section: The Safety Of Surgery In Women With Superficial Peritoneal I...mentioning

confidence: 99%

“…Guidelines provide "recommendations" that are not intended to be rigidly applied, but rather to serve as a basis for impartial information and counselling (Thornton, 2009;Bretthauer and Kalager, 2023;Howick and Doshi, 2023). iIf patients are uncertain, it should be assumed that the two options have different clinical implications, as those who try medical treatment and are not satisfied may then choose surgery without major consequences once hormones prove ineffective or intolerable, whereas the reverse means accepting morbidity and the risk of potential surgical harm anyway.…”

Section: Conclusion: Rethinking the Approach To Women With Endometrio...mentioning

confidence: 99%

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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: The Safety Of Surgery In Women With Superficial Peritoneal I...mentioning

confidence: 99%

Section: Conclusion: Rethinking the Approach To Women With Endometrio...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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“…Thus, although it is patients who bear the burden of symptoms, side effects and surgical complications, it is not always in their power to make a truly informed choice. 117 …”

Section: Dislocationmentioning

confidence: 99%

“SO FAR AWAY” * How Doctors Can Contribute to Making Endometriosis Hell on Earth. A Call for Humanistic Medicine and Empathetic Practice for Genuine Person-Centered Care. A Narrative Review

Cetera,

Facchin,

Viganò

et al. 2024

IJWH

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“SO FAR AWAY” * How Doctors Can Contribute to Making Endometriosis Hell on Earth [* by Knopfler M. In Dire Straits. Brothers in Arms. Vertigo Records, U.K., 1985] Abstract The distance physicians may create within the relationship with their patients by not having a humanistic approach to their practice may strongly influence clinical outcomes. The purpose of this paper is to convey the well-known narrative of patient dissatisfaction into pro-action by discussing the aspects of dehumanization, which may occur in the relationship between physicians and women with endometriosis. Eight dimensions of dehumanization are examined and related to everyday scenarios occurring in endometriosis care settings and the possible downstream consequences on patients’ clinical outcomes are described. Objectification, which may come across as minimization of pain, may not only increase patients’ perception of pain but also lead to undertreatment of unrecognized forms of endometriosis, especially among adolescents. Passivity, that is not favoring shared decision-making nor self-management, may compromise adherence to treatment, reducing patients’ trust in physicians and quality of life. The same consequences may result from homogenization, that is giving for granted that all patients have the same access to care. Both isolation, ie not practicing therapeutic empathy, and loss of meaning, ie not supporting patients in the re-definition of their life plans, may affect women’s psychological wellbeing and further increase pain perception. Ignoring women’s personal journey by not providing clear information on the consequences endometriosis may have on their lives may favor women’s self-silencing. Not promoting an un-biased communication and not setting aside scientific polarization are the main features of dislocation, which may jeopardize patient empowerment. Lastly, having a reductionist approach to the body may contribute to chronicization of pain, thus compromising quality of life. This considered, taking time to listen to women with endometriosis and tailoring decisions on the basis of their individual needs should be fostered as a moral duty. Physicians should always keep in mind that they are not only deliverers of treatment; they are a form of treatment themselves.

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“…Bretthauer and Kalager discuss the communication of risk 1. I think one difficulty is that most measures used in research are irrelevant to patients.…”

mentioning

confidence: 99%

What is my risk, doctor? Let’s stop giving patients irrelevant information

Lee

2023

BMJ

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What is my risk, doctor? How to convey disease risk and treatment effects

Cited by 6 publications

References 14 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

“SO FAR AWAY” * How Doctors Can Contribute to Making Endometriosis Hell on Earth. A Call for Humanistic Medicine and Empathetic Practice for Genuine Person-Centered Care. A Narrative Review

What is my risk, doctor? Let’s stop giving patients irrelevant information

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