Development of a treatment decision aid for patients with dysplastic nevi who are candidates for re-excision

Low health literacy can impact a patient’s ability to understand and apply health information to make informed decisions. The management of histologic dysplastic nevi (DN) can be a confusing and controversial topic for both patients and dermatologists due to subjectivity in melanocytic neoplasm histologic grading, uncertainty regarding the malignant potential of DN, and limited studies evaluating outcomes of treatment versus observation.¹ Patient decision aids (PDAs) can help inform patients about medical conditions and treatment options while promoting decisions that reflect their priorities.²

Balancing the risks and benefits of surgical treatment for DN remains highly subjective, varying with individual circumstances and values. Recent literature suggests that most mildly and moderately DN are low risk for malignant transformation; however, clinicians and patients may have different assessments of this risk.^3,4

Employing a multistage, internationally standardized, systematic approach, we crafted a PDA following International Patient Decision Aid Standards criteria with four distinct phases: scope and purpose definition, design, prototype, and pilot test (Fig 1).⁵ Our objectives were to use physician and patient feedback to design a PDA for histologic DN management and to determine whether this PDA helps patients better understand risks and benefits of surgical treatment versus observation of DN. Focus groups of 9 patients with DN and 8 clinical melanoma specialists determined PDA content. Feedback from multiple rounds of physician and patient testing was incorporated into the PDA. Focus group patients were asked to evaluate the final PDA on comprehensibility, relevancy, and usability (Table I).

Fig 1.

Front and back of final DN PDA. DN, Dysplastic nevi; PDA, patient decision aid.

Table I.

Patient and physician demographics and format preferences

	Unit	N (%)
Patient characteristics
Total		9
Treatment choice	Excision	7 (78)
	Observation	2 (22)
Patient preferences
Content	Risk of melanoma	7 (78)
	Scar/margin size	5 (56)
	Cost	4 (44)
	Physician recommendation	4 (44)
	Impact on daily living	4 (44)
Usage	PDA given before meeting with surgeon	6 (67)
	No response or no preference	3 (33)
Format	Website	4 (44)
	Paper/brochure	3 (33)
	No response or no preference	2 (22)
Response to “The tool helps me to reflect on my values enough to select a treatment course”	“Strongly agree”	6 (74)
	“Somewhat agree”	1 (13)
	“Somewhat disagree”	1 (13)
	“Strongly disagree”	0 (0)
Physician characteristics
Total		8
Board-certified profession	Dermatology	6 (75)
	Dermatopathology	2 (25)
Years of clinical experience	<5 y	1 (13)
	5-9 y	1 (13)
	10-14 y	0 (0)
	>15 y	6 (75)
Physician preferences
Content	Dispelling the misconception that DN are obligate “premelanomas”	8 (100)
	Emphasized addressing atypia spectrum	4 (50)
	Expert options from the Delphi consensus	3 (38)
Format	Website	3 (38)
	Video	3 (38)
	Paper/brochure	1 (13)
	No response or no preference	4 (50)

DN, Dysplastic nevi; PDA, patient decision aid.

Patients in our focus groups requested simplifying language, reducing complex concepts, retaining melanoma risk information, and introducing cost and scar size information. The expert clinician panel prioritized clear language and inclusion of qualitative risk to accommodate patients with lower literacy. We optimized readability by reducing text density, translating risk to qualitative terms, and emphasizing minimal melanoma risk. We also explained how dysplasia severity and margin status change excision practice. Oregon Health & Science University’s Health Literacy team vetted the final document to ensure understandable, person-centered health information at a fifth grade reading level.

We navigated inherent limitations. First, the existing melanoma risk literature is limited by small, often single-center studies. There is also variability in pathologist DN interpretation and potential DN behavior.³ While the group considered using quantitative statistics, the highly debated consensus was that too much uncertainty exists in the current literature to provide a probability for the rate of malignant transformation. We developed our tool using published evidence to support consistent, evidence-based care and enhance shared decision-making. Every effort was made to ensure diversity in our development cohort; however, the recruitment response in this group was limited, resulting in a more homogenous participant pool than initially planned. Finally, our PDA may not be appropriate for patients with higher baseline melanoma risk. Clinical judgment is critical in discussing risk with patients.

The patient and physician priorities regarding DN treatment identified in this study highlight the necessity for personalized DN management and shared decision making tools such as PDAs. Future prospective studies are needed to evaluate the effect of PDA usage on patient satisfaction and treatment decisions.