Barriers to shared decision-making with women of reproductive age affected by a chronic inflammatory disease: a mixed-methods needs assessment of dermatologists and rheumatologists

Murray, Suzanne; Augustyniak, Monica; Murase, Jenny E.; Fischer‐Betz, Rebecca; Nelson‐Piercy, Catherine; Peniuta, Morgan; Vlaev, Ivo

doi:10.1136/bmjopen-2020-043960

Cited by 9 publications

(4 citation statements)

References 50 publications

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“…Nonetheless, shared decision-making between rheumatologists, patients and other healthcare providers can help optimize sex and gender-based priorities, leading to more efficient delivery of healthcare services. 21,22 Recently, there has been widespread discussion about the experiences of lesbian, gay, bisexual, transgender and queer (LGBTQ+) individuals in the healthcare system, the implicit and explicit biases many face, and difficulties in accessing necessary medical services. Educational materials often have biased representations of LGBTQ+ patients, which may contribute to social stigma.…”

Section: Disparities By Social Roles and Factorsmentioning

confidence: 99%

Health Equity in Rheumatology: A Global Health Perspective

Sandhu¹,

Wright²,

Fajardo³

et al. 2023

Rheumatology

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The United Nations Sustainable Development Goals emphasize the importance of ensuring the health and wellbeing of all human beings as a necessary precondition for peace and prosperity in the world. The spread of egalitarian values in the modern era has generated discussions about health disparities, with renewed calls to lessen health inequities for vulnerable and marginalized populations. This article briefly discusses health disparities and inequities in medicine, focusing on rheumatology. It is well documented that rheumatic disorders present differently among patients of different sex, gender, race and ethnicity. Despite this, most educational materials and guidelines in rheumatology use images and treatment regimens best suited for Caucasian patients. These differences are amplified by the limited recruitment of diverse patients in clinical trials, resulting in disease stereotypes that are based primarily on Caucasian patients, and do not represent disease manifestations across patient populations. These disparities create significant health inequities when combined with socioeconomic differences, and are further enhanced by implicit and explicit biases faced by patients from minoritized and marginalized communities when seeking healthcare services. Ultimately, this results in worse health outcomes for minority patients, further driving healthcare disparities and inequities across patient populations.There is an urgent need to address these disparities through multiple strategies including the diversification of the healthcare workforce, the introduction of implicit bias training for clinicians, and the creation of educational materials which accurately portray disease manifestations among patients of all races, genders and ethnicities.

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Section: Disparities By Social Roles and Factorsmentioning

confidence: 99%

Health Equity in Rheumatology: A Global Health Perspective

Sandhu¹,

Wright²,

Fajardo³

et al. 2023

Rheumatology

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“…This has improved outcomes, including disease remission and prevention of disability. However, the range of medications used and their relative novelty can cause significant concern for women, their partners and healthcare practitioners with regard to safety during pregnancy and breast feeding 4. This may result in unnecessary and potentially harmful cessation of treatment.…”

Section: Introductionmentioning

confidence: 99%

“…However, a significant number of women will still experience active disease or increased disease activity. Flares in disease activity may be exacerbated by cessation of treatment often due to perceived safety concerns 4…”

Section: Introductionmentioning

confidence: 99%

Prescribing for pregnancy: inflammatory rheumatic disease

Steele

Thorne

2023

DTB

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Inflammatory rheumatic disease during pregnancy requires careful management. Key factors for successful pregnancy outcome are disease remission at the time of conception and optimal disease control during pregnancy. This article forms part of a series on prescribing for pregnancy and discusses the impact of inflammatory arthritis on pregnancy and the influence pregnancy may have on inflammatory arthritis. It highlights the importance of prepregnancy care and collaborative working between obstetric and rheumatology specialties as well as focusing on prescribing before, during and after pregnancy.

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“…Shared decision-making depends on clinicians having an in-depth understanding of the treatments to ensure informed counseling and consent as well as minimize decisional regret. However, a study reviewing the use of SDM in women of reproductive age found that dermatologists had “the perception that all biologics are strictly contraindicated during pregnancy,” demonstrating the gaps in knowledge.…”

mentioning

confidence: 99%

Shared Decision-making, Therapeutic Choice, and Decisional Regret in Alopecia Areata—Where Narrative Ethics Meets the Unconscious Bias of Clinicians

Asfour

Narayan

2023

JAMA Dermatol

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To the Editor We read with great interest the study by Reyes-Hadsall et al 1 on the use of shared decision-making (SDM) and decisional regret in patients with alopecia areata (AA). Dermatology therapeutics is rapidly evolving, with many associated uncertainties. As a result, our task as clinicians to help navigate patients through treatment options and risk/benefit perception has become more challenging. Internationally, SDM is considered core to good clinical practice. The UK National Institute of Health and Care Excellence has created SDM guidelines covering how to make SDM part of everyday care in health care settings and promotes its inclusion in organizational culture and practices. 2 However, we need to acknowledge barriers to the use of SDM, which depends on clinicians having access to up-todate high-quality evidence. In AA, we often use unlicensed treatments with little or low-level evidence. Until the US Food and Drug Administration approved baricitinib for treating severe AA, there were no licensed systemic treatments. Clinicians are required to support patient autonomy, increase risk perception accuracy, and reduce decisional conflict with very few tools at their disposal. Drug registries (dermatology and pregnancy-related) have enabled us to evaluate the longterm safety and efficacy of treatments in the real world. 3 We envisage that the Global Registry of Alopecia Areata Disease Severity and Treatment Safety pharmacovigilance register will build evidence to further support future treatment recommendations. 4 Shared decision-making depends on clinicians having an in-depth understanding of the treatments to ensure informed counseling and consent as well as minimize decisional regret. However, a study reviewing the use of SDM in women of reproductive age found that dermatologists had "the perception that all biologics are strictly contraindicated during pregnancy," 5 demonstrating the gaps in knowledge.The association between SDM and decisional regret can be interpreted using narrative ethics. In the clinical setting, narrative ethics are applied through understanding the stories and characteristics that comprise the identity and well-

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Barriers to shared decision-making with women of reproductive age affected by a chronic inflammatory disease: a mixed-methods needs assessment of dermatologists and rheumatologists

Cited by 9 publications

References 50 publications

Health Equity in Rheumatology: A Global Health Perspective

Health Equity in Rheumatology: A Global Health Perspective

Prescribing for pregnancy: inflammatory rheumatic disease

Shared Decision-making, Therapeutic Choice, and Decisional Regret in Alopecia Areata—Where Narrative Ethics Meets the Unconscious Bias of Clinicians

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