Key Points
Question
How do patients with alopecia areata (AA) approach shared decision-making (SDM) with their dermatologist, and what is the association of this interaction with decisional regret and patient satisfaction?
Findings
including 1074 patients with AA, most participants prefered to make treatment decisions with their dermatologist, and increased SDM correlated with lower decisional regret. Decisional regret around the most recent treatment option was low, especially among patients taking Janus kinase inhibitors.
Meaning
Implementing components of SDM may improve patient satisfaction with decision-making among patients with AA; future studies should assess structured implementation of SDM as the AA treatment landscape evolves.
This cross-sectional survey study evaluates patient preferences for shared decision-making and its association with decisional regret.
Abstract
Importance
Alopecia areata (AA) is an autoimmune disorder of hair loss with a complex and evolving treatment landscape, making it an ideal setting for shared decision-making (SDM) between patients and physicians. Given the varying efficacy, experience, and risks of treatments for AA, we sought to evaluate patient preferences for SDM and the association of SDM with decisional regret.
Objective
To evaluate patient preferences for SDM and the association of SDM with decisional regret.
Design, Setting, and Participants
A cross-sectional online survey using the validated SDMQ9 scale for shared decision-making and Decisional Regret Scale (DRS) was distributed using the National Alopecia Areata Foundation (NAAF) with the aim of assessing (1) patient preferences in SDM when making treatment decisions, (2) how patients perceived the last decision to have been made, (3) which components of SDM were incorporated into the last decision, and (4) decisional regret related to their last treatment decision. The survey was distributed from July 12, 2021, to August 2, 2021, and data analysis occurred from October 2021 to March 2022.
Main Outcomes and Measures
Primary outcomes included (1) patient preferences in incorporation of SDM, (2) how patients made their most recent treatment decision, (3) which components of SDM were incorporated into their most recent treatment decision measured with the validated SDMQ9, and (4) an assessment of decisional regret in relation to SDM components and the most recent treatment modality used by the patient as measured by the validated DRS.
Results
Of 1387 individuals who initiated the survey, 1074 completed it and were included in the analysis (77.4% completion rate). Overall, 917 respondents were women (85.4%). There were 5 American Indian or Alaska Native respondents (0.5%), 33 were Asian (3.1%), 112 Black or African American (10.4%), 836 White (77.8%), and 36 were multiracial (3.4%) or other (36 [3.4%]). The mean age (SD) was 49.3 (15.4) years. Most respondents preferred making the final treatment decision themselves after considering their physician’s opinion (503 [46.8%]). Of those who preferred to make treatment decisions using SDM, most made the last AA treatment decision with their physician (596 [55%]; 95% CI, 53%-58%; P < .001). The components of SDM implemented by the patients’ dermatologists most identified were the physician “explained the advantages and disadvantages of treatment options” (472 [44%]), and the physician “asked me which treatment option I prefer” (494 [45.9%]). Incorporation of SDM by physicians was generally associated with decreased decisional regret (all ORs with 95% CIs greater than 1.1; P < .01). The treatments associated with the lowest decisional regret were Janus kinase (JAK) inhibitors, followed by biologics, and deciding not to treat; whereas, the highest decisional regret was reported with anthralin and minoxidil.
Conclusions and Relevance
The findings of this cross-sectional survey study suggest that patients with AA prefer to make treatment decisions with their dermatologist using SDM. When SDM is used, patients report less decisional regret, indicating that SDM may help improve the patient-reported quality of treatment decisions. Newer, more efficacious therapies such as JAK inhibitors may be related to lower decisional regret. Future studies should seek to devise solutions to implement SDM as the AA treatment landscape continues to evolve.
Introduction
Alopecia areata (AA) is an autoimmune disorder of hair loss with several therapeutic options that vary in efficacy and safety.1 The complex nature of AA treatment decision-making is difficult for patients to navigate and increases reliance on their dermatologist’s guidance through shared decision-making (SDM) to make decisions that best align with their preferences.2
Decision-making has evolved from a focus on disclosure of information by physicians to a more patient-centered approach that focuses on patient understanding and autonomy.3 Shared decision-making is a process by which physicians communicate with patients (or other decision-makers) that involves interaction and open communication to explore and contextualize treatment choices to maximize patient autonomy. Patient preferences regarding the dermatologist’s role in AA treatment decision-making have not been thoroughly explored. Studies have shown that patients value and desire SDM in other conditions including psoriasis, vitiligo, skin cancer, and connective tissue disorders, with 67% to 80% of these patients largely preferring to take an active role in the decision-making process.4,5,6,7 Implementation of SDM through decision aids may improve patient satisfaction and minimize decisional regret, defined as regretting the decision made regardless of the reason why.8,9 Assessing the relationship between SDM and decisional regret may allow dermatologists to help patients choose treatment options that align with patients’ specific goals and risk tolerance.
In this cross-sectional survey study, we used an online survey to assess patient preferences in SDM with their dermatologist during AA treatment decision-making, and what aspects of their involvement and which treatment decisions are associated with lower decisional regret and improved satisfaction.
Methods
A cross-sectional web-based survey was distributed through Qualtrics (Qualtrics, LLC) to a convenience sample of patients using the National Alopecia Areata Foundation’s (NAAF) list servs from July 12, 2021, to August 2, 2021; data analysis occurred from October 2021 to March 2022. This study was approved by the Mass General Brigham institutional review board. Written informed consent was obtained from all participants.
The survey instrument was developed with the aim of assessing (1) patient preferences when making AA treatment decisions, (2) how patients perceived the last treatment decision to have been made, (3) what components of SDM they perceived that last treatment decision had, and (4) decisional regret related to that treatment decision. These components were assessed using the Control Preferences Scale,10 9-item Shared Decision Making Questionnaire (SDMQ9),11 and Decisional Regret Scale,12 respectively (eTable 1 and eTable 2 in the Supplement).
Continuous variables were summarized using means and standard deviations. Categorical variables were summarized using counts and percentages; χ2 tests were used to assess associations. All analyses performed using JASP statistical software (version 0.14.1, University of Amsterdam) and P values <.05 were deemed statistically significant.
Results
Baseline Characteristics
Of 1387 individuals who initiated the survey, 1074 surveys were completed (completion rate: 77.4%). Those without AA, who did not complete the survey, or were younger than 18 years were excluded from analysis (313 [22.6%]). Most respondents were women (917 [85.4%]) and White (836 [77.8%]) with a mean (SD) age of 49.3 (15.4) years. Respondents had a diagnosis of AA for a mean (SD) of 17.7 (15.4) years, and 626 (58.3%) respondents had a history of alopecia totalis (Table 1).
Table 1. Baseline Characteristics of Survey Participants.
| Characteristic | No. (%) |
|---|---|
| Completed responses (response rate) | 1074 (77.4) |
| Age, mean (SD), y | 49.3 (15.4) |
| Years with alopecia areata, mean (SD) | 17.7 (15.4) |
| History of alopecia totalis | 626 (58.3) |
| Current active hair loss | 967 (90.0) |
| Sex | |
| Female | 917 (85.4) |
| Male | 157 (14.6) |
| Race | |
| American Indian or Alaska Native | 5 (0.5) |
| Asian | 33 (3.1) |
| Black or African American | 112 (10.4) |
| Multiracial | 36 (3.4) |
| White | 836 (77.8) |
| Other | 36 (3.4) |
| Prefer not to answer | 16 (1.5) |
| Ethnicity | |
| Hispanic or Latino | 79 (7.4) |
| Not Hispanic or Latino | 962 (89.6) |
| Prefer not to answer | 33 (3.1) |
| Last treatment used | |
| Steroid injections | 309 (28.8) |
| Decided not to treat | 227 (21.1) |
| Wig | 151 (14.1) |
| Janus kinase inhibitor | 106 (9.9) |
| Minoxidil | 75 (7.0) |
| Topical cream | 75 (7.0) |
| Other | 56 (5.2) |
| Immunotherapy | 19 (1.8) |
| Antimetabolite | 16 (1.5) |
| Light therapy | 15 (1.4) |
| Biologics | 10 (1.0) |
| Anthralin | 9 (0.8) |
| Calcineurin inhibitor | 4 (0.4) |
| Prostaglandin | 1 (0.1) |
| Sulfasalazine | 1 (0.1) |
Patient Preferences in Treatment Decision-Making and Last Treatment Decision
Most patients preferred making the final treatment decision themselves after considering their physician’s opinion (503 [46.8%]). Overall, 708 (65.9%) patients reported making their last treatment decision together with their physician, with 283 (26.4%) patients making the decision themselves and 83 (7.7%)leaving the decision solely up to their physician. Most patients who preferred to make treatment decisions using SDM made the last AA treatment decision with their physician (596 [55%]; 95% CI, 53%-58%; P < .001) (Table 2).
Table 2. Correlation Between Preferred Role in Decision-Making and How Last Alopecia Areata Treatment Decision Was Madea.
| Variable | How was last decision made, No. (%) | Total | ||
|---|---|---|---|---|
| By my doctor | By myself | With a doctor (SDM) | ||
| Preferences in decision-making | ||||
| I prefer my doctor makes the final selection about which treatment I will receive | 9 (45) | 0 | 11 (55) | 20 |
| I prefer that my doctor and I share responsibility for deciding which treatment is best for me | 31 (9.7) | 40 (12.6) | 247 (77.7) | 318 |
| I prefer that my doctor makes the final decision about which treatment will be used, but seriously considers my opinion | 11 (21.6) | 7 (13.7) | 33 (64.7) | 51 |
| I prefer to make the final selection about which treatment I will receive | 11 (6) | 103 (56.6) | 68 (37.4) | 182 |
| I prefer to make the final selection of my treatment after seriously considering my doctor’s opinion | 21 (6) | 133 (56.6) | 349 (37.4) | 503 |
| Total | 83 | 283 | 708 | 1074 |
Abbreviation: SDM, shared decision-making.
Contingency table statistically significant at a value of P < .001.
Shared Decision-Making and Decisional Regret
The 2 components of SDM most identified to be part of patients’ last AA treatment decision were that their physician “explained the advantages and disadvantages of treatment options” (472 [44%] completely or strongly agreed) and “asked me which treatment option I prefer” (494 completely or strongly agreed [45.9%]) (eTable 2 in the Supplement). All components of SDM were significantly correlated with decreased decisional regret (all ORs with 95% CIs greater than 1.1; P < .001) except for “Doctor made clear that a decision needs to be made” (OR, 1.45; 95% CI, 0.88-2.37; P = .14) (eTable 3 in the Supplement).
Decisional Regret and Last AA Treatment Chosen
When assessing decisional regret for the last AA treatment decision made, approximately half of the patients felt that they made the right decision (559 [52%]) and reported they would make the same choice again (546 [50.8%]). Very few patients felt that the decision did them harm (62 [5.8%]) (eTable 4 in the Supplement). The treatments associated with the lowest proportion of decisional regret were Janus kinase (JAK) inhibitors, followed by biologics and the decision not to treat at this time. The highest proportion of patients reporting decisional regret was for anthralin and minoxidil (Table 3).
Table 3. Decisional Regret and Last Alopecia Areata (AA) Treatmenta.
| Last AA treatment used, No. (%) | DRS “I would go for the same choice if I had to do it over again,” No. (%) | |||
|---|---|---|---|---|
| Agree | Disagree | Neutral | ||
| Anthralin | 28.8 | 3 (33.3) | 4 (44.4) | 2 (22.2) |
| Antimetabolites (such as azathioprine or methotrexate) | 21.1 | 6 (37.5) | 2 (12.5) | 8 (50.0) |
| Biologics (such as etanercept or alafacept) | 14.1 | 6 (60.0) | 2 (20.0) | 2 (20.0) |
| Calcineurin inhibitors (such as tacrolimus or cyclosporin) | 9.9 | 1 (25.0) | 0 | 3 (75.0) |
| Decision not to treat at this time | 7.0 | 127 (55.9) | 33 (14.5) | 67 (29.5) |
| Immunotherapy (such as DPCP, DNCB, SADBE) | 7.0 | 6 (31.6) | 3 (15.8) | 10 (52.6) |
| JAK inhibitors (such as baricitinib, ruxolitinib, tofacitinib) | 5.2 | 79 (74.5) | 11 (10.4) | 16 (15.1) |
| Light therapy (such as photodynamic therapy, PUVA, lasers) | 1.8 | 7 (46.7) | 5 (33.3) | 3 (20.0) |
| Minoxidil | 1.5 | 25 (33.3) | 28 (37.3) | 22 (29.3) |
| Other | 1.4 | 32 (58.2) | 10 (18.2) | 13 (23.6) |
| Prostaglandin (such as latanoprost or bimatoprost) | 1.0 | 1 (100) | 0 | 0 |
| Steroid injections | 0.8 | 154 (49.8) | 75 (24.3) | 80 (25.9) |
| Sulfasalazine | 0.4 | 0 | 1 (100) | 0 |
| Topical or cream steroids | 0.1 | 28 (37.3) | 19 (25.3) | 28 (37.3) |
| Wig | 0.1 | 71 (46.7) | 36 (23.7) | 45 (29.6) |
Abbreviations: DRS, Decisional Regret Scale; DNCB, dinitrochlorobenzene; DPCP, topical diphencyprone; JAK, Janus kinase; SADBE, squaric acid dibutyl ester; PUVA, psoralen and ultraviolet light A.
Statistically significant at P < .001.
Discussion
The findings of this cross-sectional survey study suggest that patients with AA prefer to share the responsibility of making treatment decisions with their dermatologist. Participants reported SDM was largely integrated into the last AA treatment decision, which correlated with less decisional regret, and decisional regret around their most recent treatment option was low. Overall, these findings demonstrate that patients preferred incorporating SDM into AA treatment decisions, and that this integration was associated with more satisfaction with decision-making.
Although patients reported that dermatologists frequently conveyed the risks and benefits and elicited patients’ preferences of the available treatment options, individual components of SDM were not consistently integrated into the decision-making process. Shared decision-making is a vital component of the decision-making process as the AA therapeutic landscape continues to evolve. Studies have shown that SDM may be affected by factors that modify the patient-physician relationship like racial/ethnic diversity, sex, education, and other factors.13 In addition, patients with chronic, long-standing AA as those included in this study may have a closer relationship with their physician, further influencing SDM in their encounters. Solutions to better implementation of SDM, such as structured implementation using decision aids, have demonstrated benefit to patients with other conditions (eg, psoriasis) and may help minimize decisional conflict, provide knowledge to patients, and improve physician-patient communication.4,8,9
These findings also highlight the limitations of and patient dissatisfaction with current treatment.14 Although they are among the most common medical interventions, less than half of patients who decided to use steroid injections, topical steroids, or minoxidil would “make the same choice again.”1 Among medical interventions, the 74.5% of patients who would choose JAK inhibitors again likely reflects the superior efficacy of this emerging therapeutic class.1,2 However, the study included a large proportion of individuals with a long medical history of AA, which may have resulted in a bias around the use of JAK inhibitors. The 55.9% of patients satisfied with their decision not to treat and the 46.7% who would choose wigs suggests the heterogeneity of disease experience and the potential for nonmedicinal cosmetic interventions in this population.15
As new treatments emerge, the range of options, each with varying efficacy, risks, and uncertainty highlights the importance for SDM to be integrated into appointments for patients with AA. Even with novel therapeutic developments, risk-averse patients may continue to prefer low-risk treatment options like wigs, emphasizing the importance of eliciting patient values.2 Tools to promote and improve the efficiency of SDM are required to assist dermatologists and their patients through increasingly complex and evolving AA treatment options.8,9
Limitations
Our findings must be interpreted in the context of this study design. Patients who participated in this study were recruited from the NAAF, which may not be representative of all patients with AA and may result in selection bias. Most study participants were White women, whereas AA affects all genders and races, and racial and ethnic diversity may play a role in the patient-physician relationship and in the incorporation of SDM. Most participants also had long-term AA, which may influence therapeutic choices and decisional regret. Our survey did not collect data regarding the role of culture and religion in decision-making, nor did it consider previously used treatment modalities, which may have reduced satisfaction or increased decisional regret with increased time or number of prior treatments. Factors like disease severity or highly efficacious treatments (eg, JAK inhibitors) may also play a role, and further studies are necessary to characterize the association of these factors and decisional regret for all therapeutic choices.
Conclusions
The findings of this cross-sectional survey study elucidate patient preferences for treatment decision-making in the context of AA, a complex disease with a myriad of existing and emerging treatment options. Patients preferred to make AA treatment decisions using SDM, which was associated with less decisional regret. Over half of the participants shared decisional regret with current first and second-line treatments for AA, whereas 74.5% were satisfied with JAK inhibitors, highlighting the need for expedited evaluation of this new class of agents. Regardless of the treatment choice, implementing components of SDM may help improve the quality of treatment decisions patients make by allowing them to choose treatment options that align with their values and preferences. Future studies should seek to devise solutions for structured implementation of SDM during the AA treatment decision-making process, especially as the AA treatment landscape evolves.
eTable 1. Survey instrument
eTable 2. SDMQ9 responses
eTable 3. Correlation between components of SDM and decisional regret for last AA treatment decision made
eTable 4. Decisional regret regarding last AA treatment decision made
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
eTable 1. Survey instrument
eTable 2. SDMQ9 responses
eTable 3. Correlation between components of SDM and decisional regret for last AA treatment decision made
eTable 4. Decisional regret regarding last AA treatment decision made