STUDY. Access to Health Care in Patients With Psoriasis and Psoriatic Arthritis. Data From National Psoriasis Foundation Survey Panels

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1 STUDY Access to Health Care in Patients With Psoriasis and Psoriatic Arthritis Data From National Psoriasis Foundation Survey Panels Tina Bhutani, MD; Jillian W. Wong, MS; Bruce F. Bebo Jr, PhD; April W. Armstrong, MD, MPH Importance: This article represents a real-world perspective on access to health care including the number and types of physicians seen by patients with psoriasis. It is important for practicing dermatologists to recognize patients who may be less likely to seek care for this multifaceted systemic disease as well as to be aware of reasons for not seeing physicians. Objectives: To examine the relationship between psoriasis patient characteristics and access to health care and to determine out-of-pocket costs for psoriasis care. Design: Cross-sectional survey. Setting: Patients with psoriasis and psoriatic arthritis in the general community in the United States. Participants: A random sample of patients with psoriasis and psoriatic arthritis from more than National Psoriasis Foundation members. Main Outcomes and Measures: Number and type of physicians seen in the past 2 years and out-of-pocket health care expenses were measured. Results: Among 5604 patients with psoriasis and psoriatic arthritis, 92.4% had seen at least 1 physician in 2 years. Compared with males, female patients with psoriasis were 1.47 times more likely to seek care (adjusted odds ratio, 1.47; 95% CI, ). Patients with private insurance and Medicare were more likely to seek care compared with uninsured patients (adjusted odds ratio, 3.02; 95% CI, and 2.85; , respectively). Among patients with psoriasis seeking care, 78.3% were seeing specialists; 22% obtained care from primary care physicians. Primary reasons for not seeking treatments included giving up on disease treatment (27.6%) and prohibitive cost (21%). Compared with patients with mild disease, patients with severe psoriasis were more likely to seek a specialist for care (adjusted odds ratio, 1.64; 95% CI, ). Patients spent an average of $2528 out-of-pocket per year for psoriasis care. Conclusions and Relevance: About one-quarter of patients seek psoriasis care from primary care physicians, and insurance status affects care-seeking patterns. Giving up on treatment and prohibitive costs remain primary reasons for not seeking care. JAMA Dermatol. 2013;149(6): Author Affiliations: Department of Dermatology, University of California at San Francisco, San Francisco (Dr Bhutani); University of Utah School of Medicine, Salt Lake City (Ms Wong); National Psoriasis Foundation, Portland, Oregon (Dr Bebo); and Department of Dermatology, University of California at Davis, Sacramento (Dr Armstrong). PSORIASIS IS AN INFLAMMAtory skin disease affecting approximately 0.6% to 4.8% of the global population. 1 Psoriasis is associated with psoriatic arthritis in approximately 25% to 34% of patients. 2 Patients with psoriasis have an independently elevated risk for other major illnesses, including cardiovascular diseases and malignant neoplasms. 3-6 Recent studies have documented the shortage of dermatologic care in the United States. 7 Lack of access to dermatologists can lead to a delay in optimal care and undertreatment of psoriasis, contributing to increased morbidity. The economic burden of psoriasis is significant for both patients and the health care system. In 2008, the annual cost of psoriasis in the United States was estimated at $11.25 billion, with patient outof-pocket costs accounting for 55% of the total direct costs of the disease. 8,9 Recent data from the US Centers for Disease Control and Prevention also reveal that approximately 20% of the population has been uninsured at some point during the last year. 10 These high costs, coupled with increasing numbers of patients without health care, make it difficult for patients with psoriasis to receive the quality care that they require and have unintended fiscal and health consequences. Critical data are lacking about which patient populations with psoriasis are less likely to seek care for their disease and, therefore, more likely to be under- Author Aff Departmen University Francisco, (Dr Bhutan Utah Schoo Lake City ( Psoriasis Fo Oregon (Dr Departmen University Davis, Sacr (Dr Armstr 717

2 Table 1. Patient Demographics of National Psoriasis Foundation Survey Participants a Demographic Value 2214 (39.6) Female 3381 (60.4) Age, mean (SD), y 55 (15) 4860 (88.5) Hispanic/Latino 204 (3.7) Asian 116 (2.1) African American 108 (2.0) Native American 65 (1.2) Other 138 (2.5) Third-party private 3587 (68.6) Medicare 1048 (20.0) Medicaid 129 (2.5) None 468 (8.9) 1581 (28.3) Moderate 2078 (37.2) Severe 1927 (34.5) a Values are given as number (percentage) unless otherwise noted. treated. These data would inform dermatologists about ways in which resources and policies can be directed to reach the underserved psoriasis patient populations. In this study, we analyzed population-based data from National Psoriasis Foundation patient surveys. These surveys have the unique advantage of including insured and uninsured patients and, therefore, are more likely to represent a real-world perspective on access to care in the psoriasis population than claims databases. We aimed to examine the relationship between psoriasis patient characteristics and access to care, as well as determine patients out-of-pocket spending for psoriasis treatment. METHODS DATA SOURCES The National Psoriasis Foundation serves more than 1 million people annually and conducts surveys of its constituents to gain insight about disease burden, treatment patterns, treatment satisfaction, and quality of life among patients with psoriasis and psoriatic arthritis. From 2003 through 2009 and in 2013, thirteen semiannual surveys were conducted among patients with psoriasis and psoriatic arthritis who are members of the National Psoriasis Foundation. The survey participants were identified by random sampling of more than patients with psoriasis. Approximately 400 interviews were conducted for each panel, with half occurring over the telephone and half online. Data used in this analysis consist of compiled data from all available survey panels. It was possible to combine the survey panels because of the large size of the database and the negligible (approximately 1%) overlap among the different surveys. Because this study involved only analysis of data and no direct human subjects research, institutional review board approval was waived by the Committee on Human Research at the University of California at Davis. Psoriasis severity at the time of the survey was assessed by self-report and based on patients estimates of the number of palms (expressed as total affected body surface area [BSA], where 1 palm represented 1% BSA) that psoriasis had affected on their body. 11 Psoriasis severity was categorized as mild ( 3% BSA), moderate (3%-10% BSA), and severe ( 10% BSA). Information about access to care was obtained by asking patients about their health insurance status as well as how many physicians they had consulted in the past 2 years. They were then asked about the types of physicians seen (internal medicine, family practice, dermatology, or rheumatology) and, if not seeing a specialist, the specific reason for this. Last, patients were asked to itemize costs in the last 3 months in dollars for a list of prepopulated psoriasis care expenses. STATISTICAL ANALYSIS STATA version 12 (StataCorp LP) was used for all statistical analysis. 12 Descriptive analyses were performed to tabulate demographic factors of survey participants, including age, sex, race, disease type and severity, and type of health care insurance (if any) held by the patient. We calculated summary statistics for the number and types of physicians seen during the past 2 years, reasons for not seeing a specialist for psoriasis care, and descriptions of itemized out-of-pocket spending. Multivariate logistic regression was used to analyze the binary variables of seeking care from multiple physicians and seeing a specialist for care, adjusting for the demographic factors listed previously as predictors in this analysis. The output was reported as adjusted odds ratios (aors), with calculated 95% CIs and P values. Statistical significance was established a priori at P.05. Finally, multivariate linear regression was conducted using total out-of-pocket spending as the outcome variable and the same predictors as indicated earlier. The output was reported as regression coefficients. Standard errors, 95% CIs, and P values were estimated using the bootstrap method to correct for the nonnormal, skewed distribution of the outcome variable. RESULTS The compiled survey data produced responses from 5604 patients from 2003 through 2009 and Demographic information is summarized in Table 1. When patients were questioned about how many physicians they had seen in the past 2 years, 92.4% responded that they had seen 1 or more. Most of these patients (67.7%) had seen 1 to 2 physicians, while 25% had seen 3 or more physicians during the time course. We examined whether certain demographic factors were associated with seeking care for psoriasis from physicians. Compared with males, female patients had 1.47 times the odds of seeking care from physicians for their psoriasis (aor, 1.47; 95% CI, ; P =.001). Patients with private insurance and Medicare were also more likely to seek care compared with uninsured patients (aor, 3.02; 95% CI, ; P.001 and 2.85; ; P.001, respectively). Patients with Medicaid had approximately twice the odds of seeking care compared with uninsured patients, but this value did not reach statistical significance (aor, 1.96; 95% CI, ; P =.06). Last, compared with patients with mild psoriasis, patients with severe psoriasis had about 1.6 times the odds of seeing a physician for their psoriasis (aor, 1.55; 95% CI, ; P =.003) (Table 2). 718

3 Table 2. Multivariate Analysis of Factors Important for Seeking Psoriasis Care From Physicians Reason Given Up Demographic aor (95% CI) P Value Female 1.47 ( ).001 Age (10 y) a 0.99 ( ).79 Hispanic/Latino 1.39 ( ).31 Asian 1.02 ( ).95 African American 1.42 ( ).45 Native American 0.79 ( ).61 Other 0.81 ( ).53 None Third-party private 3.02 ( ).001 Medicare 2.85 ( ).001 Medicaid 1.96 ( ).06 Moderate 0.99 ( ).94 Severe 1.55 ( ).003 Abbreviation: aor, adjusted odds ratio. a Age was analyzed as a categorical variable in intervals of 10 years. Among patients who reported seeing physicians, 78.3% were seeing specialists (either a dermatologist or a rheumatologist), while 22% obtained care for their psoriasis from an internal medicine physician, family practitioner, or other medical provider. Ten percent of respondents were not seeing a physician. When asked reasons for not seeing a specialist for psoriasis care, most patients listed that they had given up on treatment of the disease (27.6%), the cost was prohibitive (21%), or it was just too much of a hassle (11%) (Figure). When examining whether demographic factors were associated with seeing a specialist, we found that patients with Medicare, Medicaid, or third-party insurance had significantly greater odds of seeing a specialist compared with patients without insurance (aor, 3.80; 95% CI, ; P.001; aor, 3.55; 95% CI, ; P.001; and aor, 2.97; 95% CI, ; P.001, respectively) (Table 3). Compared with patients with mild disease, patients with severe psoriasis were also more likely to seek a specialist for care (aor, 1.64; 95% CI, ; P.001). For itemized out-of-pocket spending, the highest costs reported by respondents were due to health insurance premiums (mean $323 per the last 3 months) and prescription medications (mean $141 per the last 3 months). The next highest costs were for psoriasis-related physician visits (mean $91 per the last 3 months) and psoriasis over-the-counter medications (mean $76 per the last 3 months). Patients spent an average of $632 in the past 3 months on their skin-related care, amounting to a mean out-of-pocket cost of $2528 per year (Table 4). After calculation of total out-of-pocket spending, the regression analysis demonstrated that only greater psoriasis severity was significantly associated with increased costs ($562.79; 95% CI, $ $847.26; P.001). Other demographic factors, including age, sex, and race, also Cost Other Too Much Hassle Takes Too Much Time Access to a Specialist Too Far Away Nothing Works Concerns About Risks/Adverse Effects My Disease Does Not Bother Me % of Patients Figure. Reasons for not seeing a specialist for psoriasis care. Table 3. Multivariate Analysis of Factors Important for Seeking Specialists for Psoriasis Care Demographic Adjusted OR (95% CI) P Value Female 1.13 ( ).10 Age (10 y) a 1.00 ( ).93 Hispanic/Latino 0.89 ( ).53 Asian 1.00 ( ).98 African American 0.84 ( ).47 Native American 0.86 ( ).64 Other 1.10 ( ).69 No insurance Third-party private 3.80 ( ).001 Medicare 3.55 ( ).001 Medicaid 2.97 ( ).001 Moderate 1.05 ( ).59 Severe 1.64 ( ).001 Abbreviation: OR, odds ratio. a Age was analyzed as a categorical variable in intervals of 10 years. showed increased costs but did not reach statistical significance (Table 5). DISCUSSION Psoriasis is a chronic inflammatory disease that requires regular and specialized medical care. Although a wide range of treatments is available, these treatments may not be accessible to all patients due to economic, geographic, or psychosocial challenges. In this study, we analyzed National Psoriasis Foundation survey data that captured responses from a diverse group of patients with psoriasis regardless of their insurance status. This study found that approximately 91% of patients with psoriasis and psoriatic arthritis were covered by some 719

4 Table 4. Out-of-Pocket Spending for Psoriasis Care in the Last 3 Months Variable Mean (SD) [Range], US $ Health insurance premiums 323 (528) [0-3700] Psoriasis prescription 141 (418) [0-5400] medications Psoriasis-related physician visits 91 (300) [0-5000] Psoriasis OTC medications 76 (322) [0-6000] House cleaning, laundry, and 62 (426) [0-8000] transportation Clothing to cover up psoriasis 47 (120) [0-1000] Psoriasis-related hospital or 37 (217) [0-2000] outpatient surgery bills Supplies to treat psoriasis 22 (122) [0-2200] Items to protect psoriasis on 20 (74) [0-1000] hands and feet Makeup to cover up psoriasis on 15 (54) [0-600] skin and nails Abbreviation: OTC, over-the-counter. Table 5. Multivariate Analysis of Factors Associated With Increased Out-of-Pocket Spending Demographic Adjusted Coefficients (95% CI) a P Value Female ( to ).20 Age (10 y) b ( to ).57 Hispanic/Latino ( to ).20 Asian ( to ).92 African ( to ).47 American Native American ( to ).23 Other ( to ).20 None Third-party ( to ).18 private Medicare ( to ).37 Medicaid ( to ).39 Moderate ( to ).45 Severe ( to ).001 a Confidence intervals were calculated using the bootstrap method. b Age was analyzed as a categorical variable in intervals of 10 years. form of private or public health insurance, although some patients may pay for health care costs out-of-pocket. This is comparable with the national average of approximately 86% insured Americans. 10 In addition, 92.4% of patients with psoriasis had seen at least 1 physician in the past 2 years. The study finding that female patients were more likely to see a physician for psoriasis compared with male patients was consistent with the national data about sex differences in health care seeking behavior. For example, in the United States, compared with women, men, on average, use less physician services, long-term care, and preventative health care, even after adjusting for health status and socioeconomic levels. 13 Our study findings suggest that male patients may need more encouragement to seek medical care for psoriasis. Among the survey responders, 7.6% reported not receiving any medical care for their psoriasis. Among patients who sought medical care, 78.3% were evaluated by either a dermatologist or a rheumatologist, and 22.0% were treated by primary care providers. Specifically, patients with insurance and those with severe psoriasis were significantly more likely to seek care from specialists. Due to increasing clinical demand, some primary care physicians may find it difficult to care for patients with severe psoriasis or stay regularly up-to-date on psoriasis therapies. One study that surveyed a random sample of US primary care physicians and cardiologists found that less than half were aware of the increased cardiovascular comorbidities in patients with psoriasis. 14 Thus, obtaining care from specialists who are conversant with traditional and newer therapies and aware of the comorbidities would be highly beneficial to patients. Furthermore, with the recognition of psoriasis as a potentially multisystem disease, coordinated and multidisciplinary care among specialists and primary care physicians will likely result in improved health outcomes for patients with psoriasis. Almost 30% of patients cited that they did not seek care from specialists because they had given up on treatments. This suggests that these patients might have interfaced with the medical facilities in the past but did not receive satisfactory treatments and were no longer interested in further care. Therefore, efforts to increase both clinician and patient knowledge regarding all available therapies are necessary to ensure that patients are offered individualized and modern treatments that maximize the benefit to risk ratio. In this study, 21.4% of patients cited high cost as the reason for not consulting with a specialist for care of their disease. The respondents spent more than $2500 per year out-of-pocket on their psoriasis care, despite the majority having health insurance. Therefore, the economic burden of psoriasis must be considered in the context of health care delivery. Patients with psoriasis may incur significantly higher health care costs compared with those without psoriasis. 15 One study showed that per-patient health care expenditures were comparable to other major conditions, including diabetes, hypertension, and coronary heart disease. 16 Furthermore, comorbid conditions associated with psoriasis can present a significant economic burden that might not have been accounted for in traditional cost analyses. One study suggests that patients with psoriasis who have comorbidities are more likely to experience urgent care visits, have greater rates of hospitalization, have more frequent outpatient visits, and incur greater costs than patients with psoriasis who do not have comorbidities. 17 The study findings need to be interpreted in the context of the survey design. The survey respondents were patients with self-reported psoriasis and psoriatic arthritis who are members of the National Psoriasis Foundation. The survey respondents are likely to be more in- 720

5 terested in their disease processes, and a greater proportion are insured patients compared with the US population. Therefore, the assessments of patients not receiving treatments are likely to be underestimated. Furthermore, no methods were established to monitor the accuracy of patient self-reported costs, which may have been overestimated or underestimated. In conclusion, our study findings show that almost one-quarter of patients seek psoriasis care from primary care physicians, and insurance status affects the care-seeking patterns of patients with psoriasis. Giving up on disease treatment and prohibitive costs remain the primary reasons for not seeking care. The economic burden of psoriasis is significant. Even among the insured patients, the out-of-pocket costs remain high for psoriasis care. More effort is necessary to encourage patients to seek care for psoriasis, reduce out-of-pocket health care costs, and increase patient access to treatments. Accepted for Publication: December 5, Correspondence: April W. Armstrong, MD, MPH, Department of Dermatology, University of California at Davis, 3301 C St, Ste 1400, Sacramento, CA (aprilarmstrong@post.harvard.edu). Author Contributions: All authors 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 analysis. Study concept and design: Armstrong. Acquisition of data: Bebo and Armstrong. Analysis and interpretation of data: Bhutani, Wong, and Armstrong. Drafting of the manuscript: Bhutani, Wong, and Armstrong. Critical revision of the manuscript for important intellectual content: All authors. Statistical analysis: Bhutani. Administrative, technical, or material support: Wong, Bebo, and Armstrong. Study supervision: Armstrong. Conflict of Interest Disclosures: Dr Armstrong is an investigator and a consultant to Abbott, Amgen, and Janssen. Funding/Support: None reported. REFERENCES 1. Neimann AL, Porter SB, Gelfand JM. The epidemiology of psoriasis. Expert Rev Dermatol. 2006;1(1): Gladman DD. Psoriatic arthritis. Dermatol Ther. 2004;17(5): Neimann AL, Shin DB, Wang X, Margolis DJ, Troxel AB, Gelfand JM. Prevalence of cardiovascular risk factors in patients with psoriasis. J Am Acad Dermatol. 2006;55(5): Robinson D Jr, Hackett M, Wong J, Kimball AB, Cohen R, Bala M; IMID Study Group. Co-occurrence and comorbidities in patients with immune-mediated inflammatory disorders: an exploration using US healthcare claims data, Curr Med Res Opin. 2006;22(5): Gelfand JM, Dommasch ED, Shin DB, et al. The risk of stroke in patients with psoriasis. J Invest Dermatol. 2009;129(10): Gelfand JM, Shin DB, Neimann AL, Wang X, Margolis DJ, Troxel AB. The risk of lymphoma in patients with psoriasis. J Invest Dermatol. 2006;126(10): Kimball AB, Resneck JS Jr. The US dermatology workforce: a specialty remains in shortage. J Am Acad Dermatol. 2008;59(5): Fowler JF, Duh MS, Rovba L, et al. The impact of psoriasis on health care costs and patient work loss. J Am Acad Dermatol. 2008;59(5): Javitz HS, Ward MM, Farber E, Nail L, Vallow SG. The direct cost of care for psoriasis and psoriatic arthritis in the United States. J Am Acad Dermatol. 2002; 46(6): Cohen RAW, SchillerJS. Health insurance coverage: early release of estimates from the National Health Interview Survey, /nhis/earlyrelease/insur htm. Accessed November 11, Feldman SR, Fleischer AB Jr, Reboussin DM, et al. The self-administered psoriasis area and severity index is valid and reliable. J Invest Dermatol. 1996; 106(1): Longest KC, ed. Using Stata for Quantitative Analysis. Thousand Oaks, CA: Sage; Pinkhasov RM, Wong J, Kashanian J, et al. Are men shortchanged on health? perspective on health care utilization and health risk behavior in men and women in the United States. Int J Clin Pract. 2010;64(4): Parsi KK, Brezinski EA, Lin TC, Li CS, Armstrong AW. Are patients with psoriasis being screened for cardiovascular risk factors? a study of screening practices and awareness among primary care physicians and cardiologists. J Am Acad Dermatol. 2012;67(3): Yu AP, Tang J, Xie J, et al. Economic burden of psoriasis compared to the general population and stratified by disease severity. Curr Med Res Opin. 2009; 25(10): Gunnarsson C, Chen J, Rizzo JA, Ladapo JA, Naim A, Lofland JH. The direct healthcare insurer and out-of-pocket expenditures of psoriasis: evidence from a United States national survey. J Dermatolog Treat. 2012;(4): Kimball AB, Guérin A, Tsaneva M, et al. Economic burden of comorbidities in patients with psoriasis is substantial. J Eur Acad Dermatol Venereol. 2011; 25(2):