Willingness-to-pay stated preferences in cutaneous lupus erythematosus: a pilot study.

Cutaneous lupus erythematosus (CLE) is a chronic skin disease that significantly impacts quality of life (QOL). This study tested a novel method to measure QOL in CLE using willingness-to-pay (WTP) stated preferences, and aimed to determine which of nine domains of life are most affected by CLE. Twenty-one participants with CLE ranked the domains in order of impact on CLE-related QOL, and then stated how many United States dollars they would be willing to pay for a hypothetical cure for each domain. Eighty-one percent of participants were female; mean age was 42.4 years. Photosensitivity was ranked highest by 71.4% of respondents. Participants were willing to pay the most for a hypothetical cure for CLE specific to photosensitivity (median = $200,000), the least for a cure specific to self-care (median = $0). Participants were willing to pay a median of $1,000,000 for an overall cure for CLE. Limitations include a small sample size for this pilot study and that willingness-to-pay may be influenced by individual perception of money and socioeconomic factors. This study successfully pilot-tested a WTP method and ranking task for health-related QOL. Photosensitivity was the domain of life most affected by CLE, which is a domain unique to our novel tool.

Development and pilot-testing of the Alopecia Areata Assessment Tool (ALTO).

BACKGROUND: Alopecia areata (AA) is an autoimmune disease characterized by non-scarring hair loss. The lack of a definitive biomarker or formal diagnostic criteria for AA limits our ability to define the epidemiology of the disease. In this study, we developed and tested the Alopecia Areata Assessment Tool (ALTO) in an academic medical center to validate the ability of this questionnaire in identifying AA cases. METHODS: The ALTO is a novel, self-administered questionnaire consisting of 8 closed-ended questions derived by the Delphi method. This prospective pilot study was administered during a 1-year period in outpatient dermatology clinics. Eligible patients (18 years or older with chief concern of hair loss) were recruited consecutively. No patients declined to participate. The patient's hair loss diagnosis was determined by a board-certified dermatologist. Nine scoring algorithms were created and used to evaluate the accuracy of the ALTO in identifying AA. RESULTS: 239 patients (59 AA cases and 180 non-AA cases) completed the ALTO and were included for analysis. Algorithm 5 demonstrated the highest sensitivity (89.8%) while algorithm 3 demonstrated the highest specificity (97.8%). Select questions were also effective in clarifying disease phenotype. CONCLUSION: In this study. we have successfully demonstrated that ALTO is a simple tool capable of discriminating AA from other types of hair loss. The ALTO may be useful to identify individuals with AA within large populations.

Health Care Resource Utilization and Costs Among Adults with Atopic Dermatitis in the United States: A Claims-Based Analysis.

BACKGROUND: Data on health care resource utilization (HCRU) and costs for patients with atopic dermatitis (AD) are lacking. OBJECTIVE: The objective of this study was to determine HCRU and costs associated with AD in US adults. METHODS: This retrospective study identified patients with AD from the Truven Health Marketscan Commercial Claims and Encounters database during 2013 based on ≥2 claims with International Classification of Diseases, Ninth Revision code 691.8 (n = 10,533; first claim = index event); 1-year continuous enrollment before and after index was required. Patients were age- and gender-matched in a 1:3 ratio to controls without AD (n = 31,599). Patients with AD were further categorized into 2 groups, with treatment regimens as surrogates for increasing disease severity: claim for phototherapy or systemic immunomodulatory agents (more severe) or no claim for either (less severe). Incremental differences in resource use and costs were evaluated using multivariate analysis. RESULTS: AD was associated with higher utilization and costs across resource categories (all P < .0001); adjusted total incremental annual costs were $3,302. Resource utilization and costs were higher in the more severe group, with adjusted total incremental annual costs of $4,463. CONCLUSION: AD is associated with significant incremental health care utilization and costs, which are higher in patients with more severe disease.

The Burden of Atopic Dermatitis: Summary of a Report for the National Eczema Association.

To assess the patient-level and societal burden of atopic dermatitis, we comprehensively reviewed the literature related to quality of life, social, economic, academic, and occupational impacts. Atopic dermatitis has profound impacts on patient and family quality of life. A conservative estimate of the annual costs of atopic dermatitis in the United States is $5.297 billion (in 2015 USD). People with atopic dermatitis may change their occupation because of their skin disease. Research gaps include quality of life assessments outside of tertiary care centers, impacts on partners and families of adult patients, and updated comprehensive cost estimates.

Shedding Light on the "Hidden Psoriasis": A Pilot Study of the Inverse Psoriasis Burden of Disease (IPBOD) Questionnaire.

While burden of disease (BOD) data exists for plaque psoriasis, and to a lesser extent other phenotypes of psoriasis, there is no published data on the impact of inverse (intertriginous) psoriasis. We sought to assess the overall BOD among patients with inverse psoriasis (IP). We introduce the Inverse Psoriasis Burden of Disease (IPBOD) questionnaire and compare it to the Dermatology Life Quality Index (DLQI). In this cross-sectional pilot study, we administered the IPBOD and the DLQI to 16 patients. We present the initial psychometric properties of the IPBOD survey. We used Spearman's correlation coefficients to compare the two questionnaires on overall performance and in specific domains. Our cohort had an average age of 55.6 (SD 16.6) years, was predominantly female (68.8%), and white (87.5%). 87.5% of patients had a second psoriasis subtype. A majority of patients reported some effect of IP on pain (n=14, 87.5%). Thirteen (81.3%) patients reported some effect on depressed mood or anxiety/worry. Overall, the largest effect was on body self-image (93.8% reporting an effect). The average DLQI score was 8.5/30, higher than average DLQI scores reported in patients with plaque psoriasis or psoriatic arthritis. Average IPBOD score was 4.9/10. The reliability of IPBOD was good (overall Cronbach's alpha = 0.89, individual items' range 0.88 - 0.91). Correlations between IPBOD and DLQI were: overall (Spearman's P=0.650, P=0.006), symptoms (P=0.462, P=0.072), daily activities (P=0.507, P=0.045), leisure (P=0.633, P=0.008), interpersonal function (P=0.728, P=0.001), and work and school (P=0.427, P=0.100). IP has a profound impact on patients' lives and the results of this pilot study suggest that the IPBOD questionnaire may be a useful disease-specific tool for measuring the BOD of IP.

J Drugs Dermatol. 2016;15(8):1011-1016.

Comprehensive Assessment of the Psoriasis Patient (CAPP): A Report from the GRAPPA 2015 Annual Meeting.

Outcome measures for psoriasis severity are complex because of the heterogeneous presentation of the disease. At the 2015 annual meeting of the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA), members introduced the Comprehensive Assessment of the Psoriasis Patient (CAPP), a novel disease severity measure to more accurately assess the full burden of plaque psoriasis and subtypes, including inverse, scalp, nail, palmoplantar, and genital psoriasis. The CAPP is based on a 5-point physician's global assessment for 7 psoriasis phenotypes and incorporates visual analog scale-based, patient-derived, patient-reported outcomes. By quantifying disease effects of plaque psoriasis, 6 other psoriasis subtypes, as well as quality of life and daily function, the CAPP survey identifies a subset of psoriasis patients with moderate to severe psoriasis that would not be considered moderate to severe when assessed by the Psoriasis Area and Severity Index. The current version of CAPP is focused entirely on psoriasis. Feedback from our industry colleagues and collaborators has suggested that a psoriatic arthritis (PsA) measure may be important to include in the CAPP. At the 2015 GRAPPA meeting, we administered a survey to 106 GRAPPA members to determine whether a PsA measure should be included. A majority (74%) of respondents across all professions agreed that the CAPP should include a measure of PsA. Although responses varied widely on how PsA should be measured, a majority of the respondents reported that presence of PsA in both peripheral and axial joint assessment was important.

Comparative effectiveness of topical calcineurin inhibitors in adult patients with atopic dermatitis.

Atopic dermatitis (AD) is a chronic inflammatory skin disease characterized by extreme pruritis and lichenified papules and plaques that may begin in or persist into adulthood. Topical corticosteroids are first-line prescription therapy for AD; they are efficacious and have a well established safety profile. The topical calcineurin inhibitors tacrolimus and pimecrolimus were approved by the US FDA in 2000 and 2001, respectively, as second-line topical therapy for AD. This review evaluates the available studies on the comparative effectiveness, safety, cost, and impact on quality of life of topical corticosteroids and topical calcineurin inhibitors for the treatment of adult AD. Tacrolimus was found to be as effective as class III-V topical corticosteroids for AD of the trunk and extremities, and more effective than low-potency class VI or VII corticosteroids for AD of the face or neck. Pimecrolimus was less effective than both tacrolimus and low-potency topical corticosteroids for moderate to severe AD. The short-term safety studies found that, compared with topical corticosteroid-treated adults, patients treated with topical calcineurin inhibitors had an increased frequency of application-site reactions, an equivalent infection risk, and a decreased risk of skin atrophy. The long-term safety of topical calcineurin inhibitors remains under investigation. Currently published studies that evaluated the comparative cost and quality-of-life effects compared tacrolimus with less potent topical corticosteroids despite the availability of equivalent potency corticosteroids. Further cost and quality-of-life studies are needed that compare topical calcineurin inhibitors with stronger classes of topical corticosteroids over longer time periods. The available clinical trials data do not suggest an efficacy advantage for topical calcineurin inhibitors over topical corticosteroids in adults with AD of the trunk and extremities, and there is not yet adequate evidence to support topical calcineurin inhibitors as first-line therapy for adult AD.

Willingness-to-pay stated preferences for 8 health-related quality-of-life domains in psoriatic arthritis: a pilot study.

OBJECTIVES: Psoriatic arthritis (PsA) is a seronegative inflammatory arthritis found in up to 5 to 42% of patients with psoriasis. As current instruments do not fully capture health-related quality of life (HR-QOL) in PsA from the patient's perspective, we piloted a novel application of "willingness-to-pay" (WTP) as a Patient Reported Outcome to measure the relative impact of PsA in 8 domains of HR-QOL. METHODS: Fifty-nine PsA patients were interviewed on 8 WTP HR-QOL domains (physical, emotional, sleep, work, social, self-care, intimacy, and concentration). Participants were asked to rank the 8 domains of health in order of HR-QOL impact. In each domain, participants were asked whether PsA affected that domain, whether they were willing to pay for a cure in that domain, and the amount they were willing to pay. Median WTP amounts were compared with the proportion of participants affected by and willing to pay in each domain. Responses in US dollars were interpreted as strength of preference rather than absolute monetary values. RESULTS: The majority of participants were white (98%), > or =45 years of age (70%), insured (98%), and earned >$65,000/yr (66%). The physical domain was most affected by PsA; intimacy and concentration were ranked lowest. Participants reported a wide range of WTP amounts ($0 to $1,000,000), and median WTP amounts were highest in the physical, work, sleep, and self-care domains. Related domains elicited median WTP amounts that were highly correlated. No significant differences in median WTP amounts were found across ages, genders, and income levels for the different domains. CONCLUSIONS: WTP is a novel quantitative patient-perspective measure that is comprehensible and feasible to administer in PsA patients. It represents a unique tool for capturing the complex manifestations of PsA and its impact on the individual, allowing the quantification of specific HR-QOL parameters and providing the potential for comparison across various disease processes in a given individual.

Willingness-to-pay stated preferences for 8 health-related quality-of-life domains in psoriasis: a pilot study.

BACKGROUND: Psoriasis is a chronic skin condition that has a major impact on health-related quality of life (QOL). We evaluated health-related QOL via willingness to pay and a ranking task for 8 domains of health relevant to psoriasis: intimacy, physical comfort, self-care, ability to work or volunteer, ability to concentrate, emotional health, social comfort, and ability to sleep. OBJECTIVE: The goals of the study were to pilot test a new method to measure QOL impact in psoriasis and identify the areas of life most affected by psoriasis. METHODS: Forty participants with a history of psoriasis were interviewed in a face-to-face format. First, participants were asked to rank the 8 domains of health we were investigating. Second, patients were asked how much money they would be willing to pay for a hypothetical cure for each domain of health. Responses in US dollars were interpreted as strength of preference rather than absolute monetary values. RESULTS: About half of the patients in the sample (48%) were female, 60% had a college degree or further education, and 38% had an income level over $45,000/y. Physical comfort, social comfort, and emotional health were highly ranked by more than 75% of respondents. Ability to concentrate was least likely to be affected by psoriasis with just a quarter (25.7%) of respondents ranking this domain as important. The median amount patients were willing to pay for a hypothetical cure of psoriasis specific to a particular domain was highest for physical comfort ($2000, 25th quartile = $500, 75th quartile = $5500) and emotional health ($2000, 25th quartile = $250, 75th quartile = $5000), and lowest for ability to sleep ($625, 25th quartile = $50, 75th quartile = $5000). LIMITATIONS: The sample size is modest for this pilot study. Willingness to pay as a method of eliciting stated preferences for qualitative aspects of health may be influenced by individual perception of money. CONCLUSIONS: This study successfully pilot tested a willingness-to-pay method and a ranking task to measure the relative severity of 8 domains of health-related QOL and found that physical comfort, social comfort, and emotional health were the domains of health most affected by psoriasis.

Role of skin biopsy to confirm suspected acute graft-vs-host disease: results of decision analysis.

OBJECTIVE: To estimate the value of skin biopsy in the evaluation of suspected acute cutaneous graft-vs-host disease (GVHD) after allogeneic stem cell transplantation. DESIGN: Decision analysis using parameters specified by expert opinion for skin biopsy characteristics, prevalence of acute GVHD, and value of potential outcomes. One-, 2-, and 3-way sensitivity analyses were performed. SETTING: Major stem cell transplantation centers in the United States. PATIENTS: Hypothetical cohort of patients with suspected acute cutaneous GVHD after stem cell transplantation. INTERVENTIONS: The following 3 interventions were compared: treat immediately for GVHD without performing a skin biopsy, perform a skin biopsy and treat immediately but stop treatment if skin biopsy specimen findings are inconsistent with GVHD, and perform a skin biopsy and await results of the skin biopsy specimen before treating. MAIN OUTCOME MEASURES: Number of patients appropriately and inappropriately treated with each intervention, consistency of physician-reported behavior, individualized decision analyses, and preferred intervention based on the aggregate estimates of respondents. RESULTS: The decision to treat immediately for GVHD without performing a skin biopsy yielded the best clinical outcome for the specified clinical setting and under the parameters specified by expert opinion. One-way sensitivity analyses showed that these conclusions are robust if the prevalence of acute cutaneous GVHD in stem cell recipients with rash is greater than 50%, if the sensitivity of skin biopsy specimen is less than 0.8, and the specificity of skin biopsy specimen is less than 0.9. Only 25% of physicians interviewed chose an intervention consistent with their estimates of prevalence, test characteristics, and outcome evaluations, indicating an opportunity to improve management of this important clinical condition. CONCLUSIONS: This decision analysis modeling technique predicts that in patient populations in which the prevalence of GVHD is 30% or greater (typical for allogeneic stem cell transplantation), the best outcomes were obtained with treatment for GVHD and no skin biopsy. In populations with prevalence of GVHD of 30% or less, obtaining a skin biopsy specimen to guide treatment was predicted to provide the best patient outcomes.

Willingness-to-pay stated preferences for telemedicine versus in-person visits in patients with a history of psoriasis or melanoma.

The objective of this study was to evaluate willingness-to-pay stated preferences for telemedicine versus in-person clinic visits in patients with a history of psoriasis or melanoma. Face-to-face interviews were conducted with 92 (n = 92) adult participants with a history of psoriasis or melanoma recruited primarily from hospital-based dermatology practices. Data were collected on patient demographics and willingness-to-pay responses. In a combined analysis for patients with melanoma and psoriasis, 73% of participants preferred telemedicine over in-person visits if access to the physician was quicker. The majority of those choosing telemedicine (95%) were also willing to pay a median of 25 dollars(5 dollars-500 dollars) out-of-pocket. When time to see a physician was held constant for telemedicine and in-person visits, 19% of participants preferred telemedicine and about 58% of these participants were willing to pay a median of 25 dollars(10 dollars-125 dollars) out-of-pocket. This preliminary work suggests that dermatology patients prefer telemedicine if this modality provides quicker access to their physician.