Customize your JAMA Network experience by selecting one or more topics from the list below.
Kim J, Kim DJ, Ortenzio FS, et al. Patients With Psoriasis and Personalized Trade-offs in Treatment Decisions—Lessons Learned From Focus Groups. JAMA Dermatol. 2016;152(6):720–722. doi:10.1001/jamadermatol.2016.0501
Psoriasis is a common debilitating disease for which there are many treatment options, creating complex choices for patients and clinicians. Patient decision aids (PDAs), decision-supporting tools that facilitate shared decision-making, may engender a collaborative process between physician and patient. The design of PDAs typically focuses on conveying information about evidence-based treatment options and the value-sensitive nature of the decisions.1,2 To help patients better align treatment choices with their personal values, the specifics of patient treatment preferences must be more elaborately embedded into the design of PDAs.3,4 We undertook detailed assessment of treatment decision-making experiences of patients with psoriasis to discover key patient preferences that can be incorporated into a subsequent PDA design for these patients.
Focus groups followed a typical 60-minute, semistructured, moderator-facilitated interview format. Stage 1 focus groups assessed patient interest in the use of a PDA and preferences for platform and content. Stage 2 focus groups assessed in greater detail key themes identified in stage 1. Moderator guides were tested among investigators and patients for face and content validity; at the end of each focus group, themes were summarized by the moderator for validation or refinement by participants. An experienced moderator conducted the initial groups at each stage and trained and observed the second moderator for consistency. We collaborated with certified qualitative analysts in using qualitative analysis software (NVivo) to code redacted audiotape for themes.
The study was approved by The Rockefeller University institutional review board; all participants provided written informed consent and were compensated for their participation.
Eight focus groups were conducted between November 2013 and January 2015, enrolling patients with psoriasis recruited from the general public and from a volunteer registry, and excluding volunteers with significant prior research experience: 41 participants (24 men, 17 women) enrolled in and completed the study. Their mean age was 51.2 years; the mean duration of psoriasis was 16.2 years. Their mean Dermatology Life Quality Index score was 8.2, indicating that psoriasis had moderate effect on focus group participants’ life on average.
Participants were interested in using a PDA, in online format and in-person with a clinician. Content themes included detailed treatment information, access to clinicians with psoriasis expertise, and information about disease and treatment interactions. Treatment “effectiveness” and “safety” were dominant themes with variable personal meanings, including opposing meanings (eg, partial clearing of lesions could be considered effective or ineffective) (Table). Trade-offs in treatment decision-making emerged as a strong theme across all focus groups. For example, patients weighed the benefits of having clear skin against the risks of organ damage from prolonged systemic treatment, or of rebounding symptom severity with treatment cessation: “It’s a balance of the quality of life and what you’re risking.” In general, patients placed safety and effectiveness over convenience, and some patients favored effectiveness over possible safety issues. One participant valued drug safety so highly he was willing to endure psoriasis that severely limited his life rather than risk a systemic therapy. Several participants noted that the process of explicitly examining values underlying decision-making provided insights that impacted their decisions.
When treatment options are varied and imperfect, as they are for psoriasis, “trade-offs” between effectiveness, safety, and convenience are required in treatment decisions. Schaarschmidt et al5 reported that patients are willing to trade decreased safety (adverse effects) for increased effectiveness (better therapeutic outcome) or increased convenience (compatibility with personal and professional life). In contrast, Seston et al6 reported that patients are willing to trade decreased effectiveness (time to achieve moderate skin improvement) to increase safety (minimize the risk). Our focus group study confirmed that the trade-offs in treatment decisions are highly personalized based on the interpretation and relative value placed on effectiveness, safety, and convenience.
To facilitate patient decision-making that incorporates personalized values related to treatment trade-offs, a PDA for patients with psoriasis must elicit individual perceptions of the trade targets. If the PDA offers ranked lists of treatments according to effectiveness, safety, or convenience, the PDA should first investigate patients’ own conceptions of these 3 factors. This approach may help clinicians effectively and cooperatively address patients’ risk-benefit concerns and to incorporate patient preferences within the consultation.
Corresponding Author: Jaehwan Kim, MD, PhD, The Rockefeller University, Laboratory for Investigative Dermatology, Box 178, 1230 York Ave, New York, NY 10065 (firstname.lastname@example.org).
Accepted for Publication: February 12, 2016.
Published Online: March 30, 2016. doi:10.1001/jamadermatol.2016.0501.
Author Contributions: Drs J. Kim and Lowes had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.
Study concept and design: J. Kim, D. J. Kim, Kost, Lowes.
Acquisition, analysis, or interpretation of data: All authors.
Drafting of the manuscript: J. Kim, D. J. Kim, Dare, Kost.
Critical revision of the manuscript for important intellectual content: J. Kim, Ortenzio, Dare, Frank, Kost, Lowes.
Obtained funding: J. Kim, D. J. Kim, Ortenzio, Lowes.
Administrative, technical, or material support: Ortenzio, Kost, Lowes.
Study supervision: D. J. Kim, Kost, Lowes.
Conflict of Interest Disclosures: None reported.
Funding/Support: This study was supported in part by grant No. UL1 TR000043 from the National Center for Advancing Translational Sciences, National Institutes of Health Clinical and Translational Science Award program.
Role of the Funder/Sponsor: The funding sources had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.
Additional Contributions: We thank Jonathan Tobin, PhD, Center for Clinical and Translational Science, and James G. Krueger, MD, PhD, Laboratory for Investigative Dermatology, both at The Rockefeller University, for their insightful advice for the study. We are indebted to Donna Brassil, MA, CCRC, and Richard Hutt, BA, CCRC, Facilitation Office, The Rockefeller University for their help in coordinating and facilitating the focus group studies. They were not compensated for their contributions.
Create a personal account or sign in to: