New NEA Research: Breaking Down the Essential Elements of Shared Decision Making

The National Eczema Association (NEA) research team has published its latest paper on shared decision making (SDM), or the process through which patients and/or caregivers and healthcare providers (HCPs) work together to make informed decisions about treatments and/or care plans.

This new research, published in the Journal of the American Academy of Dermatology International (JAADi), is the second publication from the survey NEA conducted in early 2021 of its patient and caregiver community regarding their experiences, preferences and motivators for SDM. The first publication was ranked #3 in JAMADerms’s Most Talked About Articles of 2022.

The survey provided a number of factors related to SDM, asking respondents (840) to rate each on a scale from 0 (not important at all) to 4 (absolutely essential), as well as how often these factors were true with their current eczema HCP.¹ Factors included aspects about the HCP, the patient, the visit and the guidance provided. 

Respondents were considered to have their “needs met” if they indicated a factor was very important or absolutely essential and also reported it as usually or always true. For the nine factors deemed very important/absolutely essential by at least 80% of respondents, the percentage of respondents who indicated their needs were not met ranged from 11.4%–36.3%.¹   

Overall, this paper revealed that eczema patients and caregivers want to be involved in decision making for their treatments and that SDM is more likely to be facilitated when patient education and empowerment are combined with HCPs who initiate treatment discussions and are compassionate listeners to patient perspectives. 

Aspects about the provider

Eczema patients and caregivers overwhelmingly prioritized HCPs who elicit trust, listen to their perspectives and value their input in order to feel comfortable engaging in SDM. Trust in an HCP has been shown to increase treatment adherence, while strong patient-HCP relationships can decrease potentially costly communication errors (in more ways than one).^2–7 A recent study of over 38,000 reviews of general dermatology clinics concluded that a HCP’s personality, empathy and kindness may help overcome other issues that are out of their control.⁸ 

Although the current study showed that few eczema patients perceived that the race, ethnicity and gender of their HCP matching their own was important for SDM, as many as half of all Black respondents did identify this as a key factor for race and ethnicity.¹ 

Aspects about the patient

Patients and caregivers in this study also acknowledged their own health literacy as an important factor and did not feel that the responsibility for the facilitation of SDM was solely on the HCP. Approximately 92% of respondents said that their own health literacy, the ability to articulate their experience and feeling comfortable enough to do so were very important or absolutely essential for facilitating SDM. About 88% of respondents felt that these factors were usually or always true for them with their current eczema HCP.¹

Aspects about the visit and guidance

In this study, over 85% of patients reported it was important to not feel rushed during their appointment, and yet, around one third said this was an unmet need with their current HCP.¹ Previous studies have shown that SDM in a dermatology encounter can effectively occur before, during or after a visit, and can take as little as 2–5 minutes, without adding overall time to the time already spent in routine discussions of treatment.^9–13 This study also showed 42.4% of patients did not find in-person visits to be important for SDM.¹ This may suggest the possibility for more patients and HCPs to utilize virtual visits when applicable.

Additionally, of the eczema patients and caregivers who reported that having an HCP initiate the discussion about treatment options is important/essential to them, 39% reported unmet need with their current HCP. Patients who feel equipped to discuss treatment options with a doctor they trust may additionally require an opening from the HCP to start the conversation.

Key takeaways

A chronic condition like eczema requires dynamic SDM, which may involve several treatment decisions over time. Ideally, SDM results from an ongoing dialogue over many visits between a trusted HCP and a patient or caregiver who has health literacy and the tools to advocate for themselves. This study indicates that successful SDM is more likely to be facilitated when efforts to improve patient education and empowerment are coupled with HCPs who initiate treatment discussions, maintain compassion resilience and value patient perspectives.¹ 

• Respondents most frequently rated their own health literacy and communication skills as important for SDM 
• 80% of respondents reported their needs were met for the factors they deemed most essential for facilitating SDM¹
• Low importance was placed on concordant HCP race/ethnicity; however, of those who did rate it as important, 53 out of 91 respondents identified as Black (half of all Black respondents)¹

Additional findings and insights from this study are expected to be published soon. 

References:

1. Foster, E, Loiselle, AR, Thibau, IJ, Smith-Begolka, W. Factors facilitating shared decision making in eczema: Met and unmet needs from the patient perspective. JAADi. 2023.
2. Thom DH, Ribisl KM, Stewart AL, Luke DA. Further validation and reliability testing of the Trust in Physician Scale. The Stanford Trust Study Physicians. Med Care. 1999;37(5):510-517.
3. Levinson W, Roter DL, Mullooly JP, Dull VT, Frankel RM. Physician-patient communication. The relationship with malpractice claims among primary care physicians and surgeons. JAMA. 1997;277(7):553-559.
4. Ambady N, Laplante D, Nguyen T, Rosenthal R, Chaumeton N, Levinson W. Surgeons’ tone of voice: a clue to malpractice history. Surgery. 2002;132(1):5-9.
5. Hickson GB, Clayton EW, Githens PB, Sloan FA. Factors that prompted families to file medical malpractice claims following perinatal injuries. JAMA. 1992;267(10):1359-1363.
6. Vincent C, Young M, Phillips A. Why do people sue doctors? A study of patients and relatives taking legal action. Lancet. 1994;343(8913):1609-1613.
7. Forster HP, Schwartz J, DeRenzo E. Reducing legal risk by practicing patient-centered medicine. Arch Intern Med. 2002;162(11):1217-1219.
8. Brenner RJ, Bartholomew L. Communication errors in radiology: a liability cost analysis. J Am Coll Radiol. 2005;2(5):428-431.
9. Queen D, Trager MH, Fan W, Samie FH. Patient Satisfaction of General Dermatology Providers: A Quantitative and Qualitative Analysis of 38,008 Online Reviews. JID Innov. 2021;1(4):100049.
10. McLellan C, O’Neil AI, Cameron M, et al. Facilitating Informed Treatment Decisions in Acne: A Pilot Study of a Patient Decision Aid. J Cutan Med Surg. 2019;23(1):117-118.
11. Renzi C, Di Pietro C, Gisondi P, et al. Insufficient knowledge among psoriasis patients can represent a barrier to participation in decision-making. Acta Derm Venereol. 2006;86(6):528-534.
12. Strober B, van de Kerkhof PCM, Callis Duffin K, et al. Feasibility and Utility of the Psoriasis Symptom Inventory (PSI) in Clinical Care Settings: A Study from the International Psoriasis Council. Am J Clin Dermatol. 2019;20(5):699-709.
13. Mik SML de, de Mik SML, Stubenrouch FE, Balm R, Ubbink DT. Systematic review of shared decision-making in surgery. British Journal of Surgery. 2018;105(13):1721-1730. doi:10.1002/bjs.11009