Review
Shared decision-making in the care of a patient with food allergy

https://doi.org/10.1016/j.anai.2020.05.031Get rights and content

Abstract

Objective

Shared decision-making is a patient-centered approach that involves a mutual discussion about management or treatment options, which account for the patient's underlying values and preferences for therapy. Little is known about the role of shared decision-making in the care of patients with food allergy.

Data Sources

A narrative review of the shared decision-making and food allergy outcomes literature in the past 20 years was performed.

Results

In shared decision-making, care must be taken to help clarify the patient's values regarding their care options, but not instill the clinician's values or preferences into that choice. It is essential to understand the mutual roles of the clinician in the process of providing evidence-based options for care, advocating for treatments that are aligned with their goals and preferences, and allowing patients to make fully informed decisions within this paradigm. Decision support tools such as decision aids can assist patients in the values clarification process, particularly in which preference-sensitive care exists, in which options hold significant tradeoffs and varying outcomes, and the decision is reflective of personal values and preferences. There are multiple potential preference-sensitive care scenarios in food allergy in which shared decision-making could be optimized, including the development of decision aids. These areas include early allergenic solid introduction, preemptive epinephrine use in which there is allergen exposure but no symptoms, automatic activation of EMS after using epinephrine, and choices of food allergy treatment. Only one decision aid in food allergy exists.

Conclusion

Shared decision-making is an approach that could greatly enhance food allergy care and improve patient-reported outcomes.

Introduction

Shared decision-making (SDM) is a patient-centered process in medicine that allows for a patient and their clinician to entertain a mutual discussion regarding care or treatment options, whereby the patient's values and preferences are explored and defined to help find the best option for that patient.1,2 Shared decision-making is an extension of the concept of patient-centered care, which was more formally characterized in a 2001 Institute of Medicine report. As part of this report, SDM was defined as a process that: (1) encompasses “providing care that is respectful of and responsive to individual patient preferences, needs, and values” and “ensuring that patient values guide all clinical decisions; ” (2) espouses direct communication and the free exchange of ideas between the patient and the clinician; and (3) espouses a strong foundation of evidence-based care to make a shared clinical decision.3

Intuitively, patients should be involved in their health care decisions. This relationship can be patriarchal, whereas some are patient-deferential, which enables a paternalistic hierarchy that may limit patient input into their decisions. This is what SDM aims to avoid. The SDM paradigm has evolved out of a traditionally paternalistic medical culture with respect to decision-making, in which key decisions have all too often been dominated by the clinician making the decision for the patient without necessarily considering all aspects of what the patient may want.1,2 This paradigm initially evolved out of cancer literature, but now is utilized in most areas of medicine.4 Many patients do not have a medical background and come to us seeking our expertise. Therefore, they may be overly deferent to our opinions, or we as clinicians may foster their deference by approaching the situation from a vantage that we “know best.”5,6 Medical culture has been steadily moving away from such one-sided relationships, thanks to the rise in patient advocacy and better availability of information, which enables patients to educate themselves on their condition and treatment options and help them be more proactive in their health care decisions.6

Shared decision-making is covered in more detail elsewhere in this journal issue and in the medical literature.2,7,8 Briefly, the key components are to recognize the role of a patient's values and preferences in making a health care decision. Values in this context are defined by “the extent to which decisional attributes matter to an individual,” and preferences are defined by what “an individual's inclination toward or away from a particular decision option may be.”9 The clinician's job is to make the correct diagnosis and then offer an array of potential treatment options. The patient's job is to either accept or not accept the diagnosis (and in an empowered age of internet research and seeking multiple opinions, this is a crucial aspect), and to provide us information about what features of treatment matter most to them, would facilitate their treatment adherence, and would ultimately allow them to arrive at a decision that allows them to choose a particular option.10 This process has a technical name—values clarification—whereby the patient does the following: (1) works through what goals they have for care/ treatment; (2) makes a clear determination for what tradeoffs are or are not acceptable to them in their quest to be cared for/treated within the context of their disease; and (3) helps determine the overall desirability of options and attributes of a treatment within a particular treatment context to help determine what is most important for them to consider and what they most prefer before arriving at a choice.9 In this context, the clinician suggests reasonable and efficacious options for care, and the patient is then empowered to make choices that they find most acceptable to them.11

Although the SDM process can seem simple, the execution can be delicate. It may be rare that there is a perfect fit for a care option that mutually satisfies both the patient and the clinician. Clinicians have to accept that patients may make choices that we ourselves would either not choose for them or even agree with, with the understanding that our role is to facilitate potentially acceptable care but not instill one's personal values into what the patient should choose. The purpose of SDM is to help promote health equity and patient autonomy resulting in a values-directed decision-making process. In this context, the clinician offers options rather than making choices to best fit the patient's goals, wants, needs, or other key factors that they identify could be a relevant issue to the care of their condition.2,11 There is a subtle art to this, but the first step is to understand the limitations of what the clinician's role is—to offer choices, but not to make a choice for the patients. Table 1 details a glossary of terms to help understand the process of SDM, and Figure 1 details an overview of this process between the clinician and the patient.9,12, 13, 14

Section snippets

Facilitating a Shared Decision

In medicine, when the choice of a particular option becomes dependent on what the personal preferences and values of the patient may be, this defines preference-sensitive care.11 Under these conditions, patients may need support to help to determine which aspects of a treatment decision are most important to them, given that the decision hinges on personal considerations. Decision support tools have been developed to assist with fostering this environment of SDM.15,16 Decision aids are a

Addressing Areas of SDM Within Food Allergy

Food allergy is a unique condition highly amenable to SDM and decision support tools. First, it is a condition that disproportionately affects young children, in which parents need to make decisions related to their child's health care. These decisions are often influenced by the spillover effect of illness, in which the parents and other family members are affected by the child's illness, albeit indirectly.22 Although this is not unique to food allergy among pediatric conditions, the spillover

Conclusion

Shared decision-making is a potentially valuable approach to care for food allergy. This review has outlined the theory of SDM, its importance and purpose of the values clarification process, and has highlighted the preference-sensitive nature of multiple recent major developments regarding food allergy care to indicate whether the development and use of a decision support tools would be of high utility. Although 3 scenarios were chosen for illustration, many other areas (eg, the choice to test

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      Examples included trade-offs in the advantages and disadvantages of genital surgery for children with disorders of sex development [25] and of cancer screening [14]. High impact decisions may have serious implications for health outcomes or quality of life [24]; hold effects that emerge over time and contain multiple life domains [35]; entail potentially major harmful effects [27,48,90,100]; have consequences that are immediate and important [17]; impact family members/loved ones [75,87]; or heavily influence daily routines [70,79,87]. Some authors described SDM to be applicable in ‘major’ [14] or ‘high stake’ decisions [33,94,97].

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    Disclosures: Dr Greenhawt is an expert panel and coordinating committee member of the National Institute of Allergy and Infectious Diseases–sponsored Guidelines for Peanut Allergy Prevention; has served as a consultant for the Canadian Transportation Agency, Thermo Fisher Scientific, Intrommune Therapeutics, and Aimmune Therapeutics; is a member of physician/medical advisory boards for Aimmune Therapeutics, DBV Technologies, Sanofi/Genzyme, Genentech, Nutricia, Kaleo, Inc, Nestle, Aquestive Therapeutics, Allergy Therapeutics, AllerGenis, Inc, Aravax, and Monsanto; is a member of the scientific advisory council for the National Peanut Board; has received honorarium for lectures from Thermo Fisher Scientific, Aimmune Therapeutics, DBV Technologies, Before Brands, Inc, the American College of Allergy Asthma and Immunology, the European Academy of Allergy and Clinical Immunology and other multiple state allergy societies; is an associate editor for the Annals of Allergy, Asthma, and Immunology; and is a member of the Joint Task Force on Allergy Practice Parameters.

    Funding: Dr Greenhawt is supported by grant #5K08HS024599-02 from the Agency for Healthcare Research and Quality.

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