Comparison of US patient, rheumatologist, and dermatologist perceptions of psoriatic disease symptoms: results from the DISCONNECT study

Comparison of US patient, rheumatologist, and dermatologist perceptions of psoriatic disease... Background: The perceived bother of skin and joint-related manifestations of psoriatic disease may differ among patients, rheumatologists, and dermatologists. This study identified and compared the patient and dermatologist/ rheumatologist-perceived bother of psoriatic disease manifestations. Methods: Online surveys were administered to patients with both psoriasis and psoriatic arthritis and to dermatologists and rheumatologists. Object-case best–worst scaling was used to identify the most and least bothersome items from a set of five items in a series of questions. Each item set was drawn from 20 items describing psoriatic disease skin and joint symptoms and impacts on daily activities. Survey responses were analyzed using random-parameters logit models for each surveyed group, yielding a relative-bother weight (RBW) for each item compared with joint pain, soreness, or tenderness. Results: Surveys were completed by 200 patients, 150 dermatologists, and 150 rheumatologists. Patients and physicians agreed that joint pain, soreness, and tenderness are among the most bothersome manifestations of psoriatic disease (RBW 1.00). For patients, painful, inflamed, or broken skin (RBW 1.03) was more bothersome, while both rheumatologists and dermatologists considered painful skin much less bothersome (RBW 0.17 and 0.22, respectively) than joint pain. Relative to joint pain, rheumatologists were more likely to perceive other joint symptoms as bothersome, while dermatologists were more likely to perceive other skin symptoms as bothersome. Conclusions: This study has identified important areas of discordance both between patients and physicians and between rheumatologists and dermatologists about the relative bother of a comprehensive set of psoriatic disease symptoms and functional impacts. Both physician specialists should ask patients which manifestations of psoriatic disease are most bothersome to them, as these discussions may have important implications for drug and other patient management options. Keywords: Psoriatic disease, Psoriasis, Psoriatic arthritis, Skin symptoms, Joint symptoms, Patients, Physicians * Correspondence: abhauber@rti.org RTI Health Solutions, 3040 Cornwallis Road, Post Office Box 12194, Research Triangle Park, NC 27709-2194, USA Full list of author information is available at the end of the article © The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Husni et al. Arthritis Research & Therapy (2018) 20:102 Page 2 of 11 Significance and innovations treatment is delayed, patients with psoriatic arthritis can have persistent inflammation, progressive and chronic This study determines the relative bothersomeness joint damage, severe physical limitations, disability, and of a wide range of symptoms and activity limitations increased mortality [7]. associated with psoriatic disease from the It is possible that patients and their physicians have dif- perspectives of patients, dermatologists, and ferent perceptions of the bother caused by different symp- rheumatologists in the US. toms. Recent studies in Europe and Canada comparing The perceived bother of many of the manifestations psoriatic arthritis patients’ global assessments of their dis- of psoriatic disease may differ among patients, ease activity with physician global assessments have dem- rheumatologists, and dermatologists. onstrated this discordance between patients and physicians Patients and physicians agree that joint pain, [8–11]. Patients with psoriatic arthritis and psoriasis may soreness, and tenderness are among the most perceive both skin and joint symptoms as equally bother- bothersome manifestations of psoriatic disease. some and important to manage because of their impact on Patients consider painful, inflamed, or broken skin daily activities [12]. However, it is possible that physicians’ to be more bothersome than joint pain, soreness, perceptions of the bother of symptoms to patients, and thus or tenderness, whereas both dermatologists and physicians’ treatment priorities, are influenced by their spe- rheumatologists consider painful, inflamed, or cialty. In particular, dermatologists mayperceiveskinsymp- broken skin much less bothersome than joint pain, toms as being more bothersome to patients than joint soreness, or tenderness. symptoms and, therefore, may delay in referring their pa- There are also differences between rheumatologists tients to rheumatologists until the joint symptoms are ad- and dermatologists in their perceptions of the vanced and more difficult to treat [6, 7]. bother to patients of different psoriatic disease The objective of this study (the DISCONNECT study) manifestations, with rheumatologists more was to compare perceptions of the relative bother of skin concerned about joint-related symptoms and and joint symptoms and activity limitations for patients, dermatologists more concerned about skin-related dermatologists, and rheumatologists in the United States symptoms. (US). An understanding of any disconnect or discordance Rheumatologists and dermatologists should discuss in perceptions among patients and physicians by specialty the bother of all manifestations of psoriatic disease might provide guidance for treatment choice and efficacy with their patients to ensure optimal care. assessment, as well as insights into the reasons for the de- layed referral from dermatologists to rheumatologists. Background The skin and joints are the two most common organs in- Methods volved with psoriatic disease, which includes psoriasis and Overview psoriatic arthritis. Psoriasis most commonly presents as The study was conducted through responses of patients well-demarcated erythematous plaques with silvery-white and physicians to a survey including questions designed scales that produce plaque-related pain, changes in skin using a best–worst scaling (BWS) technique. This tech- appearance, and pruritus [1]. Psoriatic arthritis is an in- nique allowed us to estimate the relative importance to pa- flammatory form of arthritis with symptoms including tients, dermatologists, and rheumatologists of varying types swelling, stiffness, and pain in the affected joint [2, 3]. of skin and joint symptoms and their impacts on patients’ Both psoriatic arthritis and psoriasis originate from an ab- daily activities. Object-case BWS, a rigorous approach normal response in the immune system; thus, treatment is grounded in random utility theory, a well-tested theory of focused on modulating the immune response. Although human decision-making [13], was used in this study. BWS concurrent treatment of psoriatic arthritis and psoriasis was used to estimate perception of relative bother to may be convenient if it allows patients to use a single patients of the different manifestations of psoriatic disease agent [4], choice of therapy for those with psoriasis and as well as the relative bother of these manifestations as psoriatic arthritis should address as many manifestations perceived by dermatologists and rheumatologists involved of psoriatic disease as possible [5]. in their care. BWS is a method for eliciting stated prefer- Psoriatic arthritis frequently occurs between 8 and ences that asks respondents to indicate which item is “best” 12 years after the onset of psoriasis and is known to and which item is “worst” from among a subset of items of affect approximately 30% of those with psoriasis [6]. interest in a series of questions [13, 14]. In each BWS ques- However, in approximately 15% of cases, psoriatic arth- tion in this study, respondents were asked to choose one ritis and psoriasis occur simultaneously or psoriatic arth- item as most bothersome (i.e., “worst”)and oneitemas ritis precedes psoriasis [3]. Although the skin will heal least bothersome (i.e., “best”) from different combinations without scarring or other permanent change even when of five of the 20 items included in the study. In object-case Husni et al. Arthritis Research & Therapy (2018) 20:102 Page 3 of 11 BWS, the items included represent a mutually exclusive set [20–22]); and consultation with clinical experts. The of descriptors of the impact of a disease without presenting items in the patient and physician surveys included different levels for each item. Two surveys were created for seven dermatologic symptoms (skin symptoms), seven this study, a patient survey and a physician survey. Both de- rheumatologic symptoms (joint symptoms), and six scriptive analyses and multivariate regressions using impacts of psoriatic arthritis and psoriasis on daily random-parameters logit (RPL) models were used to derive activities (daily activities) (Table 1). The three cat- estimates of relative bother of the different items. Subgroup egories of manifestations were determined by the analyses were also performed for patients subdivided by study team based on a review of the literature. In age, gender, severity of skin or joint symptoms, time since addition, the study team attempted to include an ap- diagnosis, and current treatment. proximately equal number of manifestations in each of the three groups. The wording used to describe Survey instrument the items varied slightly between the patient and Items for the BWS questions in the surveys were physician surveys. chosen based on: a review of published literature esti- The patient survey included 16 different BWS ques- mating preferences for treatments for psoriatic arth- tions. In each BWS question, patients were asked to ritis and/or psoriasis symptoms that included studies identify the most and least bothersome symptom from that used items derived from consultation with pa- a five-item subset of the 20 items if they were to experi- tients [15–18]; a review of the development and valid- ence all five symptoms. An example of a BWS question ation of disease-specific quality of life and patient- presented to patients is shown in Fig. 1. Each physician reported outcome measures (Dermatology Life Quality survey included only eight different BWS questions, Index [19] and Psoriatic Arthritis Impact of Disease but these were repeated for two of three possible Table 1 Items included in the patient and physician surveys Category Item Description Skin symptoms Itching skin Physically irritated skin resulting in the urge to scratch Redness of skin Red or salmon-pink color of psoriasis-affected skin Flaking skin Skin shedding Painful skin Painful, inflamed, or broken skin Nail problems Discoloration or pitting of the fingernails or toenails or separation of the nail from the nail bed Difficulty choosing clothing Skin problems influencing the clothing you wear Embarrassment Being embarrassed or self-conscious because of your skin Joint symptoms Joint pain, soreness, or tenderness Stiffness, pain, throbbing, swelling, and tenderness in one or more joints Swelling of fingers or toes Sausage-like swelling of one or more fingers or toes Fatigue Tiredness and lack of energy that does not go away with sleep Morning stiffness Stiffness after resting that makes it difficult to move your joints Eye problems Eye swelling, redness in or around your eyes, eye pain, and/or blurry vision Difficulty dressing Difficulty tying shoelaces and buttoning your clothes Difficulty walking Difficulty walking at a normal speed Impacts on daily activities Difficulty with work or school Difficulty doing your normal work or schoolwork because of your psoriasis or activities psoriatic arthritis Difficulty with social or leisure Difficulty doing your normal social or leisure activities because of your psoriasis activities or psoriatic arthritis Difficulty going shopping or doing Difficulty going shopping or looking after your home or yard because of your housework or yard work psoriasis or psoriatic arthritis Difficulty sleeping Having poor sleep quality or sleep interruptions because of your psoriasis or psoriatic arthritis Discomfort while doing everyday Discomfort doing everyday tasks, such as eating, bathing, or going to the tasks bathroom, because of your psoriasis or psoriatic arthritis Problems with relationships Problems with partner, close friends, or family because of your psoriasis or psoriatic arthritis In the physician survey, the word “your” was removed or substituted with “the patient’s” or “the” as appropriate but it otherwise kept the same wording. See Additional file 2 for the full physician survey Husni et al. Arthritis Research & Therapy (2018) 20:102 Page 4 of 11 Fig. 1 Example of a best–worst scaling question from the patient survey: “Please indicate which one of the 5 symptoms listed below would bother you the most, and which one would bother you the least if you experienced these symptoms” patient profiles (Table 2). Physicians were asked to indi- Qualitative pretesting cate which of a five-item group of the 20 items listed Qualitative pretesting of the survey instruments was would be most and least bothersome to a patient if the conducted by trained interviewers in face-to-face inter- patient experienced all five symptoms. The five items views with a convenience sample of adult patients (n = for each BWS question for both the patients and the 15), dermatologists (n = 8), and rheumatologists (n = 7). physicians were determined using an experimental Pretesting was conducted to ensure that survey items design developed using Sawtooth Software SSI Web were relevant to respondents, that descriptions of the version 8.4.4. The order in which each BWS question items were understandable to patients, that no import- appeared was randomized to mitigate possible ordering ant items were omitted, and that respondents were will- effects. ing and able to choose the most and least bothersome In addition to the BWS questions, surveys included symptoms. Information gathered during patient and screening questions to ensure eligibility and obtain in- physician pretest interviews was used to refine the final formed consent. Both surveys also elicited standard survey instruments, including minor changes in the demographic information. The patient survey asked wording of each item to improve its relevance to about treatments used and whether the respondent patients, dermatologists, and rheumatologists. had personal experience with the items included in the BWS questions and, if so, asked about item sever- Study sample ity and impact. The physician survey elicited informa- The Nielsen Company (US), LLC, a market research tion about medical experience related to treating company that has several health panels available for psoriatic arthritis and psoriasis. The complete patient survey research in the US in different disease areas, sent survey instrument is presented in Additional file 1. targeted email invitations to patients with self-reported The complete physician survey instrument is provided psoriasis and/or psoriatic arthritis and to physicians in in Additional file 2. the US who are members of existing online US health care panels. Patients recruited from these panels were aged 18 years or older with self-reported physician diag- Table 2 Patient profiles in the physician survey noses of both psoriatic arthritis and psoriasis. Physicians Patient profile Description were board-certified or board-eligible rheumatologists or Patient 1 (mild) ■ Each of these patients is [gender] dermatologists and reported spending at least 50% of ■ Each of these patients has plaques of mild their time seeing patients. severity covering 2% BSA ■ Each of these patients has four painful, swollen, The pretest interviews and the survey were approved or tender joints by RTI International’s Office of Research Protection. All Patient 2 ■ Each of these patients is [gender] respondents in this study were required to provide (moderate) ■ Each of these patients has plaques of moderate informed consent at the time of completing the survey. severity covering 7% BSA ■ Each of these patients has eight painful, swollen, or tender joints Statistical analyses Patient 3 (severe) ■ Each of these patients is [gender] Responses to all questions in the surveys were summa- ■ Each of these patients has plaques of severe rized using descriptive statistics, with the exception of severity covering 15% BSA informed-consent and BWS questions. Skipped ques- ■ Each of these patients has 11 painful, swollen, or tender joints tions were coded as missing data points and noted in BSA body surface area the summary statistics. BWS data were analyzed using Husni et al. Arthritis Research & Therapy (2018) 20:102 Page 5 of 11 the RPL regression model presented by Yuan et al. [23] included, among others, age, gender, self-rated severity based on the assumption that choices recorded from of skin or joint symptoms, time since diagnosis, and BWS questions reflected two independent decisions for current treatment. Table C-1 in Additional file 3 pre- each set of items (“best” and “worst”). To facilitate esti- sents the patient subgroup pairs. mation of a model that considers both decisions, it was To understand how physicians’ assessments of relative assumed that selection of an item as most bothersome bother varied across patient types, RBWs for each of the and selection of an item as least bothersome reflected three patient types were estimated for both rheumatolo- equal deviations in importance from the mean import- gists and dermatologists. ance of the 20 study items, albeit in opposite directions. An RPL model mitigates bias in BWS data from unob- Results served preference heterogeneity among respondents by Respondent characteristics and experience with survey estimating a distribution of log-odds importance weights items across respondents in the sample and accounting for Nielsen sent email invitations to a national sample of within-sample correlation when respondents answer 16,624 individuals who were members of online health multiple questions [24, 25]. Relative-bother weights care panels and who had previously indicated that they (RBWs) were calculated from log-odds importance had psoriasis and/or psoriatic arthritis. A total of 428 in- weights using a probability-based rescaling procedure dividuals accessed the survey screener, 229 (54% of those [26]. RBWs were estimated separately for patients, rheu- screened) were eligible, 227 (99%) consented to partici- matologists, and dermatologists. pate, and 200 (88%) completed the survey. Table 3 pre- Although an RPL model controls for response hetero- sents their characteristics. Approximately 26% of geneity across respondents within a sample, it does not patients were diagnosed with psoriasis less than 1 year explain how response patterns vary systematically with ago, 16% were diagnosed 5–10 years ago, and 15% were observable respondent characteristics. To help explain diagnosed 10 or more years ago. Approximately 37% of response heterogeneity, we estimated separate RPL patients were diagnosed with psoriatic arthritis less than models for 11 mutually exclusive pairs of patient sub- 1 year ago, 11% were diagnosed 5–10 years ago, and 6% groups and tested for differences in estimated bother were diagnosed 10 or more years ago. Self-reported weights across each subgroup pair. The subgroups mean severity of both skin and joint symptoms in the Table 3 Patient characteristics Characteristic Patients (N = 200) Age (years), mean (SD) 42 (14) Female 101 (51%) Employed (full-time, part-time, or self-employed) 153 (77%) Has had psoriasis for at least 1 year/5 years/10 years 148 (74%)/60 (30%)/29 (15%) Has had psoriatic arthritis for at least 1 year/5 years/10 years 124 (62%)/34 (17%)/12 (6%) More than five hand areas covered with psoriasis patches in the past week 88 (44%) Mean (SD) rating for overall skin symptom rating in the past week (0, did not affect how I felt at all; 10 severely affected 6.8 (2.5) how I felt) Mean (SD) rating for overall joint symptom rating in the past week (0, did not affect how I felt at all; 10 severely affected 6.4 (2.6) how I felt) Percent ever using treatment for psoriasis or psoriatic arthritis (checked all that applied) Creams, lotions, ointments, foam 84 Oral prescription medicines 54 Light therapy 27 Injectable medicines 39 Infusions at the doctor’s office 17 Other 3 None of the above 1 Data presented as n (%) unless stated otherwise SD standard deviation Husni et al. Arthritis Research & Therapy (2018) 20:102 Page 6 of 11 last week was between 6 and 7 on a scale from 1 to 10, rheumatologists (P < 0.05). In contrast, rheumatologists and 39% of patients had used injectable medications and perceived swelling of fingers and toes and difficulty shop- 17% had used infused medications. All patients had ping or doing housework or yard work as relatively more experienced some of the 20 items. The percentages of bothersome compared with joint pain, soreness, or tender- patients experiencing each item and the mean levels of ness than dermatologists (P <0.05). severity experienced are presented in Table D-1 in Additional file 4. Nielsen invited 10,791 individuals to be screened for eligi- Patient and physician comparisons bility for the physician study through email invitation. A Figure 2 also presents bother estimates for patients com- total of 466 individuals accessed the survey screener, 396 pared to physicians. For patients, the most bothersome (85% of those screened) were eligible, 394 (99%) consented item was painful, inflamed, or broken skin, followed to participate, and 300 (76%) completed the survey, com- closely by joint pain, soreness, or tenderness. The least prising 150 rheumatologists and 150 dermatologists. Table bothersome item to patients was difficulty choosing D-2 in Additional file 4 presents characteristics of the 300 clothing. Unlike physicians, patients were as bothered by physicians who completed the survey. Physicians were also painful, inflamed, or broken skin as they were by joint asked which of the 20 items their patients reported most pain, soreness, or tenderness. Patients were also as both- and least often. The responses are reported separately for ered by difficulty walking as they were by discomfort rheumatologists and dermatologists. Pearson’s chi-squared while doing everyday tasks. Differences between patients tests showed no difference between rheumatologists and and physicians suggest that while physicians may view a dermatologists (at the 5% level) in their responses to most few key items as particularly bothersome and others as of the commonly reported skin and joint symptoms but a less so, patients view more of the items as almost equally statistically significant difference for patient reporting of the bothersome. impact of their symptoms on daily activities. For example, There were also differences among patients, rheumatol- 59% of rheumatologists responded that the most commonly ogists, and dermatologists in their assessment of the reported impact on daily activity was discomfort while bother of items relative to joint pain, soreness, or tender- doing everyday tasks compared with 33% for dermatolo- ness when looking separately at skin symptoms, joint gists. The percentages for the most and least reported items symptoms, and impact on daily activities. Tables E-1 and by patients to the rheumatologists and dermatologists are E-2 in Additional file 5 present the relative bother weights presented in Table D-3 in Additional file 4. for patients and physicians, respectively, organized by item type. Painful, inflamed, or broken skin was the most Relative-bother weights bothersome of all the symptoms for patients. Among skin The bother of items was estimated relative to bother from symptoms, dermatologists assessed embarrassment to be joint pain, soreness, or tenderness, which was assigned a more bothersome relative to joint pain, soreness, or ten- value of 1.00. Bother scores less than 1.00 indicated an derness than did rheumatologists (P < 0.05); however, der- item was less bothersome than joint pain, soreness, or ten- matologists’ assessment of embarrassment was similar to derness; a score greater than 1 indicated that an item was that of patients. Except for embarrassment, patients more bothersome than joint pain, soreness, or tenderness. assessed all other skin symptoms as more bothersome Relative-bother scores are presented in Fig. 2. Since the relative to joint pain, soreness, or tenderness than did phy- differences in responses for the three different patient sicians (P < 0.05). Among joint symptoms, patients types for both rheumatologists and dermatologists were assessed difficulty walking, morning stiffness, fatigue, diffi- mostly small and not statistically significant, Fig. 2 pre- culty dressing, and eye problems to be more bothersome sents pooled data for the three patient types. relative to joint pain, soreness, or tenderness than did ei- ther rheumatologists (P < 0.05) or dermatologists (P <0. Physician specialty comparisons 05). Swelling of fingers or toes was viewed as equally Figure 2 allows comparison of bother estimates for physi- bothersome among patients and rheumatologists but less cians. Both types of physicians assessed joint pain, sore- bothersome among dermatologists than among patients ness, or tenderness as most bothersome and discomfort (P < 0.05) relative to joint pain, soreness, and tenderness. while doing everyday tasks as the next most bothersome. Finally, among impacts on daily activities, patients Furthermore, both assessed nail problems, eye problems, assessed difficulty sleeping and problems with relation- and difficulty choosing clothing as least bothersome. ships to be relatively more bothersome than did physicians However, embarrassment, difficulty with social or leisure (P < 0.05). Discomfort while doing everyday tasks and dif- activities, and flaking skin and redness of skin were per- ficulty with work or school activities were viewed equally ceived relatively more bothersome compared with joint bothersome relative to joint pain, soreness, or tenderness pain, soreness, or tenderness by dermatologists than by across patients and physicians. Husni et al. Arthritis Research & Therapy (2018) 20:102 Page 7 of 11 Fig. 2 Best–worst scaling relative-bother estimates: dermatologists, rheumatologists, and patients (N = 500). Bars for each estimate indicate 95% confidence intervals Patient subgroup comparisons soreness, or tenderness than for patients with a longer On average, younger patients (< 38 years), those with time since diagnosis (see Fig. 3). more severe skin symptoms, and those recently diag- nosed with psoriasis and/or psoriatic arthritis (< 2 years) Discussion had higher relative bother scores compared with joint Because patients with psoriatic disease commonly have pain, soreness, or tenderness for most items. Figures C- both skin and joint symptoms, these symptoms ideally 1–Figure C-11 in Additional file 3 present the results of would be comanaged by both rheumatologists and der- all patient subgroup analyses. The magnitude of differ- matologists. Studies of chronic inflammatory diseases ences in relative bother scores between the patient sub- suggest that optimal treatment should rely on shared group pairs was greatest for time since diagnosis. The decision-making between patients and their physicians most bothersome items were the same for both sub- [27, 28]. Thus, it is important to assess the differing per- groups. However, for patients who were diagnosed less ceptions patients and physician specialists have about than 2 years before the survey, many other items were symptoms associated with various organs involved in a significantly more bothersome relative to joint pain, disease. We compared perceptions of relative bother of Husni et al. Arthritis Research & Therapy (2018) 20:102 Page 8 of 11 Fig. 3 Best–worst scaling relative-bother estimates: time since diagnosis subgroups (N = 200). Bars for each estimate indicate 95% confidence intervals skin and joint symptoms and of activity impairments for patients but not to their physicians. In addition, there patients, rheumatologists, and dermatologists in the US. were differences between the physician specialties, with The most notable difference between the patients and dermatologists being more aware of bother of flaking physicians was that physicians assessed bother to pa- skin or red skin and associated impacts on embarrass- tients highly for a few key items, while patients assessed ment and social and leisure activities. While rheumatol- more items as equally bothersome. Key items perceived ogists and dermatologists were equally aware of bother as bothersome by the physicians were joint pain, sore- of joint symptoms and discomfort doing everyday tasks, ness, or tenderness; discomfort while doing everyday rheumatologists were more aware of the bother of tasks; and difficulty with work or school activities. joint-relatedsymptomssuchasswelling of fingersand These items were all rated > 0.50 relative to 1.00 for toes and difficulty shopping or doing housework or joint pain, soreness, or tenderness, while all other items yard work. in the survey received relative bother ratings of < 0.50. These findings have important implications concern- Patients rated these items highly as well, but also rated ing the management and treatment of patients with other items highly (> 0.50), including itching; flaking psoriatic arthritis and psoriasis. First, both rheumatolo- skin; painful, inflamed, or broken skin; difficulty walk- gists and dermatologists should query patients about the ing; difficulty sleeping; eye problems; fatigue; difficulty severity of their skin and joint symptoms and impact on going shopping or doing housework or yard work; and their daily activities, rather than only on the symptoms morning stiffness. Patients rated painful, inflamed, or related to their specialty. Our results suggest that treat- broken skin as relatively more bothersome (1.03) than ment by both specialists should have as its goal improve- joint pain, soreness, or tenderness (1.0). This was in ment in all skin and joint symptoms for patients with contrast to dermatologists and rheumatologists, who psoriatic involvement of both organ systems, especially rated painful, inflamed, or broken skin at 0.22 and 0.17, for patients for whom symptoms or impairment are respectively; much lower than their rating of joint pain, most severe and/or most bothersome. Specifically, those soreness of tenderness (1.0). Thus, these skin symptoms more recently diagnosed with psoriatic arthritis rated are equally as bothersome as the joint symptoms to most of the items in the survey as equally bothersome. Husni et al. Arthritis Research & Therapy (2018) 20:102 Page 9 of 11 Results from our study are similar to results in two publi- survey items were chosen to reflect symptoms and limita- cations reporting results from a single study that used a dif- tions that patients have reported as important to them. ferent approach to assign patients’ relative importance In this study, we have demonstrated that rheumatolo- weights for different symptoms of psoriatic arthritis [21, gists and dermatologists may differ in their assessment of 22]. In that study, 12 patient research partners with psori- bother of skin symptoms. There are multiple potential atic arthritis identified domains that had the greatest impact reasons for the differences between specialists, including on their lives. A larger group of patients (n = 139) was then physicians’ need to focus on a subset of psoriatic manifes- asked to assign 100 importance points to selected domains, tations given time limitations of single appointments or and these distributions were used to develop relative rank- differences in symptoms mentioned by patients to each ings of the domains. The most important domains identi- type of physician involved in their psoriatic disease care. fied in that study (with at least 50% of patients considering Nevertheless, the greater perception of the bother of skin it a priority) were pain in joints, spine, and skin; skin prob- symptoms by dermatologists and their lesser perception of lems, including itching; fatigue, including being physically the bother of some of the joint-related symptoms might tired, mental fatigue, and lack of energy; and ability to work partially explain the observed delay in referral of their or perform other activities. Similar results were shown in patients for assessment by a rheumatologist [6, 7]. our study for patients. However, corresponding values for physicians were different from those of patients in several Conclusions cases in our study, including a lower rating of the relative Our results also showed that both specialists may differ bother of fatigue. from patients in their assessment of bother of the mani- A study using a BWS approach, similar to the approach festations of psoriatic arthritis. This suggests the need used in our study, for both physicians and patients with for both rheumatologists and dermatologists to ask their acute coronary syndromes [23] showed differences in rela- patients about the bother of all manifestations of psori- tive importance of benefits and risks of antithrombotic atic disease to ensure optimal drug treatment along with therapy for cardiologists and patients. Our study and the other patient management options. Drug treatments study by Yuan et al. [23] indicate the need for physicians available for both psoriatic arthritis and psoriasis have to take into account relative bother to patients of different shown efficacy in alleviating both skin and joint symp- disease manifestations as well as importance of benefits toms. Since both types of symptoms are considered and risks of standard treatment regimens when prescrib- equally bothersome by patients with psoriatic arthritis ing treatment. This is necessary since patients’ perceptions and psoriasis, treatment regimens should be selected may differ from physicians’ perceptions. that can alleviate both types of symptoms, whichever This study has several limitations. One inherent limita- type of specialist is treating the patient. In addition, effi- tion is that the respondents evaluated hypothetical com- cacy of the treatment regimen for relief of both skin and binations of psoriatic arthritis and psoriasis symptoms joint symptoms and functional limitations should be and functional limitations, and their choices do not have carefully monitored, keeping in mind that although per- the same significance as evaluations of actual symptoms. sistent skin inflammation can be reversed, joint damage As in any survey research study, sample representa- cannot. tiveness may be a potential study limitation. Patients self-reported their physician diagnosis of psoriasis and Additional files psoriatic arthritis. It is possible that some patients may not have received this diagnosis. Another limitation was Additional file 1: Survey instrument administered to patients (PDF that the sample was small relative to the population in- 298 kb) vited to participate. It is, therefore, difficult to determine Additional file 2: Survey instrument administered to rheumatologists how representative our sample of patients was or and dermatologists (PDF 189 kb) whether our results are generalizable to all patients with Additional file 3: Results of patient subgroup analyses (DOCX 1800 kb) psoriasis and psoriatic arthritis in the US. The partici- Additional file 4: Patients’ experience with survey items and physicians’ medical experience and experience with survey items. (DOCX 45 kb) pants’ self-reported previous use of injectable or infused Additional file 5: Relative-bother estimates for patients and physicians, drugs was higher than that of patients with psoriasis (~ grouped by survey item type. (DOCX 31 kb) 15%) from a US database study [29], which would be ex- pected for those with psoriatic arthritis. Abbreviations Finally, one must use caution in the interpretation of BWS: Best–worst scaling; RBW: Relative-bother weight; RPL: Random- the study results. They should not be used to indicate the parameters logit; SD: Standard deviation; US: United States level of importance of individual symptoms, but rather the Acknowledgements relative importance of each symptom compared to the The authors gratefully acknowledge Josephine Mauskopf, PhD, and Kate other symptoms included in the study. Nevertheless, the Lothman of RTI Health Solutions for medical writing services. Husni et al. Arthritis Research & Therapy (2018) 20:102 Page 10 of 11 Funding Section 2. Psoriatic arthritis: overview and guidelines of care for treatment Financial support for this study was provided by AbbVie. with an emphasis on the biologics. J Am Acad Dermatol. 2008;58:851–64. 8. Eder L, Thavaneswaran A, Chandran V, Cook R, Gladman DD. Factors Availability of data and materials explaining the discrepancy between physician and patient global The datasets generated and/or analyzed during the current study are assessment of joint and skin disease activity in psoriatic arthritis patients. available from the corresponding author on reasonable request. Arthritis Care Res (Hoboken). 2015;67:264–72. 9. Michelsen B, Kristianslund EK, Hammer HB, Fagerli KM, Lie E, Wierød A, et al. Authors’ contributions Discordance between tender and swollen joint count as well as patient's and Design, study conduct, and financial support for the study were provided by evaluator's global assessment may reduce likelihood of remission in patients AbbVie. AbbVie participated in the interpretation of data, review, and with rheumatoid arthritis and psoriatic arthritis: data from the prospective approval of the abstract. All authors contributed to the development of the multicentre NOR-DMARD study. Ann Rheum Dis. 2017;76:708–11. publication and maintained control over the final content. 10. Desthieux C, Granger B, Balanescu AR, Balint P, Braun J, Canete JD, et al. MEH and AF guided symptom selection for the survey instrument, Determinants of patient-physician discordance in global assessment in interpreted the data, and revised the manuscript for important intellectual psoriatic arthritis: a multicenter European study. Arthritis Care Res content. BH designed the study, led the analyses, interpreted the data, and (Hoboken). 2017;69:1606–11. revised the manuscript for important intellectual content. RS provided input 11. Lindström Egholm C, Krogh NS, Pincus T, Dreyer L, Ellingsen T, Glintborg B, on the study design and analyses, interpreted the data, and revised the et al. Discordance of global assessments by patient and physician is higher manuscript for important intellectual content. JP and JS conducted the in female than in male patients regardless of the physician's sex: data on analyses, interpreted the data, and revised the manuscript for important patients with rheumatoid arthritis, axial spondyloarthritis, and psoriatic intellectual content. AG secured funding, provided input on the study design arthritis from the DANBIO Registry. J Rheumatol. 2015;42:1781–5. and analyses, interpreted the data, and revised the manuscript for important 12. Kavanaugh A, Helliwell P, Ritchlin CT. Psoriatic arthritis and burden of disease: intellectual content. All authors read and approved the final manuscript. patients perspectives from the population-based multinational assessment of psoriasis and psoriatic arthritis (MAPP) survey. Rheumatol Ther. 2016;3:91–102. Ethics approval and consent to participate 13. Flynn TN, Louviere JJ, Peters TJ, Coast J. Best-worst scaling: what it can do This study was approved by RTI International’s Office of Research Protection for health care research and how to do it. J Health Econ. 2007;26:171–89. (ID 13967). All respondents provided informed consent at the time of 14. Louviere JJ, Flynn TN, Marley AAJ. Best-worst scaling: theory, methods, and completing the survey. applications. Cambridge: Cambridge University Press; 2015. 15. Nolla JM, Rodríguez M, Martin-Mola E, Raya E, Ibero I, Nocea G, et al. Competing interests Patients’ and rheumatologists’ preferences for the attributes of biological MEH is a consultant to AbbVie and Janssen, and has served on advisory agents used in the treatment of rheumatic diseases in Spain. Patient Prefer boards for AbbVie, Celgene, Genentech, Bristol-Myers Squibb, Lilly, Pfizer, Adherence. 2016;10:1101–13. eCollection 2016 Novartis, and Janssen. AF is a speaker as well as a consultant to AbbVie, and 16. Umar N, Yamamoto S, Loerbroks A, Terris D. Elicitation and use of patients’ has served as a researcher for Mallinkrodt, Roche, and AbbVie. BH and JS are preferences in the treatment of psoriasis: a systematic review. Acta Derm full-time employees of RTI Health Solutions, which has received consulting Venereol. 2012;92:341–6. fees from AbbVie to partner on this research. JP was a full-time employee of 17. Kauf TL, Yang JC, Kimball AB, Sundaram M, Bao Y, Okun M, et al. Psoriasis RTI Health Solutions when this research was conducted. RS and AG are full- patients’ willingness to accept side-effect risks for improved treatment time AbbVie employees and own AbbVie stock. efficacy. Dermatolog Treat. 2015;26:507–13. 18. Hauber AB, Gonzalez JM, Schenkel B, Lofland J, Martin S. The value to patients of reducing lesion severity in plaque psoriasis. J Dermatolog Publisher’sNote Treat. 2011;22:266–75. Springer Nature remains neutral with regard to jurisdictional claims in 19. Basra MK, Fenech R, Gatt RM, Salek MS, Finlay AY. The Dermatology Life published maps and institutional affiliations. Quality Index 1994-2007: a comprehensive review of validation data and clinical results. Br J Dermatol. 2008;159:997–1035. Author details 20. Stamm TA, Nell V, Mathis M, Coenen M, Aletaha D, Cieza A, et al. Rheumatology Department, Cleveland Clinic Foundation, Cleveland, OH, Concepts important to patients with psoriatic arthritis are not USA. Dermatology and Pathology Department, Cleveland Clinic Foundation, adequately covered by standard measures of functioning. Arthritis Cleveland, OH, USA. RTI Health Solutions, 3040 Cornwallis Road, Post Office Rheum. 2007;57:487–94. Box 12194, Research Triangle Park, NC 27709-2194, USA. AbbVie, North 21. Gossec L, de Wit M, Kiltz U, Braun J, Kalyoncu U, Scrivo R, et al. A patient- Chicago, IL, USA. 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About psoriatic arthritis. https://www.psoriasis. for acute coronary syndrome: patient and physician perspectives. Curr Med org/about-psoriatic-arthritis. Accessed 5 Jun 2015. Res Opin. 2014;30:1733–41. 3. Ritchlin CT, Colbert RA, Gladman DD. Psoriatic arthritis. N Engl J Med. 2017; 24. Train K. Discrete choice methods with simulation. 1st ed. Cambridge: 376:957–70. Cambridge University Press; 2003. 4. Gan E, Chong W, Tey H. Therapeutic strategies in psoriasis patients with 25. Train K, Sonnier G. Mixed logit with bounded distributions of correlated psoriatic arthritis: focus on new agents. BioDrugs. 2013;27:359–73. partworths. In: Scarpa R, Alberini A, editors. Applications of simulation 5. Menter A. Psoriasis and psoriatic arthritis treatment. Am J Manag Care. 2016; methods in environmental and resource economics. Dordrecht: Springer 22:S225–37. Publisher; 2005. p. 117–34. 6. Menter A, Korman NJ, Elmets CA, Feldman SR, Gelfand JM, Gordon KB, et al. 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Adherence, satisfaction and preferences for treatment in patients with psoriasis in the European union: a systematic review of the literature. Patient Prefer Adherence. 2016; 10:2357–67. eCollection 2016 29. Zhang M, Brenneman SK, Carter CT, Essoi BL, Farahi K, Johnson MP, et al. Patient-reported treatment satisfaction and choice of dosing frequency with biologic treatment for moderate to severe plaque psoriasis. Patient Prefer Adherence. 2015;9:777–84. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Arthritis Research & Therapy Springer Journals

Comparison of US patient, rheumatologist, and dermatologist perceptions of psoriatic disease symptoms: results from the DISCONNECT study

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Abstract

Background: The perceived bother of skin and joint-related manifestations of psoriatic disease may differ among patients, rheumatologists, and dermatologists. This study identified and compared the patient and dermatologist/ rheumatologist-perceived bother of psoriatic disease manifestations. Methods: Online surveys were administered to patients with both psoriasis and psoriatic arthritis and to dermatologists and rheumatologists. Object-case best–worst scaling was used to identify the most and least bothersome items from a set of five items in a series of questions. Each item set was drawn from 20 items describing psoriatic disease skin and joint symptoms and impacts on daily activities. Survey responses were analyzed using random-parameters logit models for each surveyed group, yielding a relative-bother weight (RBW) for each item compared with joint pain, soreness, or tenderness. Results: Surveys were completed by 200 patients, 150 dermatologists, and 150 rheumatologists. Patients and physicians agreed that joint pain, soreness, and tenderness are among the most bothersome manifestations of psoriatic disease (RBW 1.00). For patients, painful, inflamed, or broken skin (RBW 1.03) was more bothersome, while both rheumatologists and dermatologists considered painful skin much less bothersome (RBW 0.17 and 0.22, respectively) than joint pain. Relative to joint pain, rheumatologists were more likely to perceive other joint symptoms as bothersome, while dermatologists were more likely to perceive other skin symptoms as bothersome. Conclusions: This study has identified important areas of discordance both between patients and physicians and between rheumatologists and dermatologists about the relative bother of a comprehensive set of psoriatic disease symptoms and functional impacts. Both physician specialists should ask patients which manifestations of psoriatic disease are most bothersome to them, as these discussions may have important implications for drug and other patient management options. Keywords: Psoriatic disease, Psoriasis, Psoriatic arthritis, Skin symptoms, Joint symptoms, Patients, Physicians * Correspondence: abhauber@rti.org RTI Health Solutions, 3040 Cornwallis Road, Post Office Box 12194, Research Triangle Park, NC 27709-2194, USA Full list of author information is available at the end of the article © The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Husni et al. Arthritis Research & Therapy (2018) 20:102 Page 2 of 11 Significance and innovations treatment is delayed, patients with psoriatic arthritis can have persistent inflammation, progressive and chronic This study determines the relative bothersomeness joint damage, severe physical limitations, disability, and of a wide range of symptoms and activity limitations increased mortality [7]. associated with psoriatic disease from the It is possible that patients and their physicians have dif- perspectives of patients, dermatologists, and ferent perceptions of the bother caused by different symp- rheumatologists in the US. toms. Recent studies in Europe and Canada comparing The perceived bother of many of the manifestations psoriatic arthritis patients’ global assessments of their dis- of psoriatic disease may differ among patients, ease activity with physician global assessments have dem- rheumatologists, and dermatologists. onstrated this discordance between patients and physicians Patients and physicians agree that joint pain, [8–11]. Patients with psoriatic arthritis and psoriasis may soreness, and tenderness are among the most perceive both skin and joint symptoms as equally bother- bothersome manifestations of psoriatic disease. some and important to manage because of their impact on Patients consider painful, inflamed, or broken skin daily activities [12]. However, it is possible that physicians’ to be more bothersome than joint pain, soreness, perceptions of the bother of symptoms to patients, and thus or tenderness, whereas both dermatologists and physicians’ treatment priorities, are influenced by their spe- rheumatologists consider painful, inflamed, or cialty. In particular, dermatologists mayperceiveskinsymp- broken skin much less bothersome than joint pain, toms as being more bothersome to patients than joint soreness, or tenderness. symptoms and, therefore, may delay in referring their pa- There are also differences between rheumatologists tients to rheumatologists until the joint symptoms are ad- and dermatologists in their perceptions of the vanced and more difficult to treat [6, 7]. bother to patients of different psoriatic disease The objective of this study (the DISCONNECT study) manifestations, with rheumatologists more was to compare perceptions of the relative bother of skin concerned about joint-related symptoms and and joint symptoms and activity limitations for patients, dermatologists more concerned about skin-related dermatologists, and rheumatologists in the United States symptoms. (US). An understanding of any disconnect or discordance Rheumatologists and dermatologists should discuss in perceptions among patients and physicians by specialty the bother of all manifestations of psoriatic disease might provide guidance for treatment choice and efficacy with their patients to ensure optimal care. assessment, as well as insights into the reasons for the de- layed referral from dermatologists to rheumatologists. Background The skin and joints are the two most common organs in- Methods volved with psoriatic disease, which includes psoriasis and Overview psoriatic arthritis. Psoriasis most commonly presents as The study was conducted through responses of patients well-demarcated erythematous plaques with silvery-white and physicians to a survey including questions designed scales that produce plaque-related pain, changes in skin using a best–worst scaling (BWS) technique. This tech- appearance, and pruritus [1]. Psoriatic arthritis is an in- nique allowed us to estimate the relative importance to pa- flammatory form of arthritis with symptoms including tients, dermatologists, and rheumatologists of varying types swelling, stiffness, and pain in the affected joint [2, 3]. of skin and joint symptoms and their impacts on patients’ Both psoriatic arthritis and psoriasis originate from an ab- daily activities. Object-case BWS, a rigorous approach normal response in the immune system; thus, treatment is grounded in random utility theory, a well-tested theory of focused on modulating the immune response. Although human decision-making [13], was used in this study. BWS concurrent treatment of psoriatic arthritis and psoriasis was used to estimate perception of relative bother to may be convenient if it allows patients to use a single patients of the different manifestations of psoriatic disease agent [4], choice of therapy for those with psoriasis and as well as the relative bother of these manifestations as psoriatic arthritis should address as many manifestations perceived by dermatologists and rheumatologists involved of psoriatic disease as possible [5]. in their care. BWS is a method for eliciting stated prefer- Psoriatic arthritis frequently occurs between 8 and ences that asks respondents to indicate which item is “best” 12 years after the onset of psoriasis and is known to and which item is “worst” from among a subset of items of affect approximately 30% of those with psoriasis [6]. interest in a series of questions [13, 14]. In each BWS ques- However, in approximately 15% of cases, psoriatic arth- tion in this study, respondents were asked to choose one ritis and psoriasis occur simultaneously or psoriatic arth- item as most bothersome (i.e., “worst”)and oneitemas ritis precedes psoriasis [3]. Although the skin will heal least bothersome (i.e., “best”) from different combinations without scarring or other permanent change even when of five of the 20 items included in the study. In object-case Husni et al. Arthritis Research & Therapy (2018) 20:102 Page 3 of 11 BWS, the items included represent a mutually exclusive set [20–22]); and consultation with clinical experts. The of descriptors of the impact of a disease without presenting items in the patient and physician surveys included different levels for each item. Two surveys were created for seven dermatologic symptoms (skin symptoms), seven this study, a patient survey and a physician survey. Both de- rheumatologic symptoms (joint symptoms), and six scriptive analyses and multivariate regressions using impacts of psoriatic arthritis and psoriasis on daily random-parameters logit (RPL) models were used to derive activities (daily activities) (Table 1). The three cat- estimates of relative bother of the different items. Subgroup egories of manifestations were determined by the analyses were also performed for patients subdivided by study team based on a review of the literature. In age, gender, severity of skin or joint symptoms, time since addition, the study team attempted to include an ap- diagnosis, and current treatment. proximately equal number of manifestations in each of the three groups. The wording used to describe Survey instrument the items varied slightly between the patient and Items for the BWS questions in the surveys were physician surveys. chosen based on: a review of published literature esti- The patient survey included 16 different BWS ques- mating preferences for treatments for psoriatic arth- tions. In each BWS question, patients were asked to ritis and/or psoriasis symptoms that included studies identify the most and least bothersome symptom from that used items derived from consultation with pa- a five-item subset of the 20 items if they were to experi- tients [15–18]; a review of the development and valid- ence all five symptoms. An example of a BWS question ation of disease-specific quality of life and patient- presented to patients is shown in Fig. 1. Each physician reported outcome measures (Dermatology Life Quality survey included only eight different BWS questions, Index [19] and Psoriatic Arthritis Impact of Disease but these were repeated for two of three possible Table 1 Items included in the patient and physician surveys Category Item Description Skin symptoms Itching skin Physically irritated skin resulting in the urge to scratch Redness of skin Red or salmon-pink color of psoriasis-affected skin Flaking skin Skin shedding Painful skin Painful, inflamed, or broken skin Nail problems Discoloration or pitting of the fingernails or toenails or separation of the nail from the nail bed Difficulty choosing clothing Skin problems influencing the clothing you wear Embarrassment Being embarrassed or self-conscious because of your skin Joint symptoms Joint pain, soreness, or tenderness Stiffness, pain, throbbing, swelling, and tenderness in one or more joints Swelling of fingers or toes Sausage-like swelling of one or more fingers or toes Fatigue Tiredness and lack of energy that does not go away with sleep Morning stiffness Stiffness after resting that makes it difficult to move your joints Eye problems Eye swelling, redness in or around your eyes, eye pain, and/or blurry vision Difficulty dressing Difficulty tying shoelaces and buttoning your clothes Difficulty walking Difficulty walking at a normal speed Impacts on daily activities Difficulty with work or school Difficulty doing your normal work or schoolwork because of your psoriasis or activities psoriatic arthritis Difficulty with social or leisure Difficulty doing your normal social or leisure activities because of your psoriasis activities or psoriatic arthritis Difficulty going shopping or doing Difficulty going shopping or looking after your home or yard because of your housework or yard work psoriasis or psoriatic arthritis Difficulty sleeping Having poor sleep quality or sleep interruptions because of your psoriasis or psoriatic arthritis Discomfort while doing everyday Discomfort doing everyday tasks, such as eating, bathing, or going to the tasks bathroom, because of your psoriasis or psoriatic arthritis Problems with relationships Problems with partner, close friends, or family because of your psoriasis or psoriatic arthritis In the physician survey, the word “your” was removed or substituted with “the patient’s” or “the” as appropriate but it otherwise kept the same wording. See Additional file 2 for the full physician survey Husni et al. Arthritis Research & Therapy (2018) 20:102 Page 4 of 11 Fig. 1 Example of a best–worst scaling question from the patient survey: “Please indicate which one of the 5 symptoms listed below would bother you the most, and which one would bother you the least if you experienced these symptoms” patient profiles (Table 2). Physicians were asked to indi- Qualitative pretesting cate which of a five-item group of the 20 items listed Qualitative pretesting of the survey instruments was would be most and least bothersome to a patient if the conducted by trained interviewers in face-to-face inter- patient experienced all five symptoms. The five items views with a convenience sample of adult patients (n = for each BWS question for both the patients and the 15), dermatologists (n = 8), and rheumatologists (n = 7). physicians were determined using an experimental Pretesting was conducted to ensure that survey items design developed using Sawtooth Software SSI Web were relevant to respondents, that descriptions of the version 8.4.4. The order in which each BWS question items were understandable to patients, that no import- appeared was randomized to mitigate possible ordering ant items were omitted, and that respondents were will- effects. ing and able to choose the most and least bothersome In addition to the BWS questions, surveys included symptoms. Information gathered during patient and screening questions to ensure eligibility and obtain in- physician pretest interviews was used to refine the final formed consent. Both surveys also elicited standard survey instruments, including minor changes in the demographic information. The patient survey asked wording of each item to improve its relevance to about treatments used and whether the respondent patients, dermatologists, and rheumatologists. had personal experience with the items included in the BWS questions and, if so, asked about item sever- Study sample ity and impact. The physician survey elicited informa- The Nielsen Company (US), LLC, a market research tion about medical experience related to treating company that has several health panels available for psoriatic arthritis and psoriasis. The complete patient survey research in the US in different disease areas, sent survey instrument is presented in Additional file 1. targeted email invitations to patients with self-reported The complete physician survey instrument is provided psoriasis and/or psoriatic arthritis and to physicians in in Additional file 2. the US who are members of existing online US health care panels. Patients recruited from these panels were aged 18 years or older with self-reported physician diag- Table 2 Patient profiles in the physician survey noses of both psoriatic arthritis and psoriasis. Physicians Patient profile Description were board-certified or board-eligible rheumatologists or Patient 1 (mild) ■ Each of these patients is [gender] dermatologists and reported spending at least 50% of ■ Each of these patients has plaques of mild their time seeing patients. severity covering 2% BSA ■ Each of these patients has four painful, swollen, The pretest interviews and the survey were approved or tender joints by RTI International’s Office of Research Protection. All Patient 2 ■ Each of these patients is [gender] respondents in this study were required to provide (moderate) ■ Each of these patients has plaques of moderate informed consent at the time of completing the survey. severity covering 7% BSA ■ Each of these patients has eight painful, swollen, or tender joints Statistical analyses Patient 3 (severe) ■ Each of these patients is [gender] Responses to all questions in the surveys were summa- ■ Each of these patients has plaques of severe rized using descriptive statistics, with the exception of severity covering 15% BSA informed-consent and BWS questions. Skipped ques- ■ Each of these patients has 11 painful, swollen, or tender joints tions were coded as missing data points and noted in BSA body surface area the summary statistics. BWS data were analyzed using Husni et al. Arthritis Research & Therapy (2018) 20:102 Page 5 of 11 the RPL regression model presented by Yuan et al. [23] included, among others, age, gender, self-rated severity based on the assumption that choices recorded from of skin or joint symptoms, time since diagnosis, and BWS questions reflected two independent decisions for current treatment. Table C-1 in Additional file 3 pre- each set of items (“best” and “worst”). To facilitate esti- sents the patient subgroup pairs. mation of a model that considers both decisions, it was To understand how physicians’ assessments of relative assumed that selection of an item as most bothersome bother varied across patient types, RBWs for each of the and selection of an item as least bothersome reflected three patient types were estimated for both rheumatolo- equal deviations in importance from the mean import- gists and dermatologists. ance of the 20 study items, albeit in opposite directions. An RPL model mitigates bias in BWS data from unob- Results served preference heterogeneity among respondents by Respondent characteristics and experience with survey estimating a distribution of log-odds importance weights items across respondents in the sample and accounting for Nielsen sent email invitations to a national sample of within-sample correlation when respondents answer 16,624 individuals who were members of online health multiple questions [24, 25]. Relative-bother weights care panels and who had previously indicated that they (RBWs) were calculated from log-odds importance had psoriasis and/or psoriatic arthritis. A total of 428 in- weights using a probability-based rescaling procedure dividuals accessed the survey screener, 229 (54% of those [26]. RBWs were estimated separately for patients, rheu- screened) were eligible, 227 (99%) consented to partici- matologists, and dermatologists. pate, and 200 (88%) completed the survey. Table 3 pre- Although an RPL model controls for response hetero- sents their characteristics. Approximately 26% of geneity across respondents within a sample, it does not patients were diagnosed with psoriasis less than 1 year explain how response patterns vary systematically with ago, 16% were diagnosed 5–10 years ago, and 15% were observable respondent characteristics. To help explain diagnosed 10 or more years ago. Approximately 37% of response heterogeneity, we estimated separate RPL patients were diagnosed with psoriatic arthritis less than models for 11 mutually exclusive pairs of patient sub- 1 year ago, 11% were diagnosed 5–10 years ago, and 6% groups and tested for differences in estimated bother were diagnosed 10 or more years ago. Self-reported weights across each subgroup pair. The subgroups mean severity of both skin and joint symptoms in the Table 3 Patient characteristics Characteristic Patients (N = 200) Age (years), mean (SD) 42 (14) Female 101 (51%) Employed (full-time, part-time, or self-employed) 153 (77%) Has had psoriasis for at least 1 year/5 years/10 years 148 (74%)/60 (30%)/29 (15%) Has had psoriatic arthritis for at least 1 year/5 years/10 years 124 (62%)/34 (17%)/12 (6%) More than five hand areas covered with psoriasis patches in the past week 88 (44%) Mean (SD) rating for overall skin symptom rating in the past week (0, did not affect how I felt at all; 10 severely affected 6.8 (2.5) how I felt) Mean (SD) rating for overall joint symptom rating in the past week (0, did not affect how I felt at all; 10 severely affected 6.4 (2.6) how I felt) Percent ever using treatment for psoriasis or psoriatic arthritis (checked all that applied) Creams, lotions, ointments, foam 84 Oral prescription medicines 54 Light therapy 27 Injectable medicines 39 Infusions at the doctor’s office 17 Other 3 None of the above 1 Data presented as n (%) unless stated otherwise SD standard deviation Husni et al. Arthritis Research & Therapy (2018) 20:102 Page 6 of 11 last week was between 6 and 7 on a scale from 1 to 10, rheumatologists (P < 0.05). In contrast, rheumatologists and 39% of patients had used injectable medications and perceived swelling of fingers and toes and difficulty shop- 17% had used infused medications. All patients had ping or doing housework or yard work as relatively more experienced some of the 20 items. The percentages of bothersome compared with joint pain, soreness, or tender- patients experiencing each item and the mean levels of ness than dermatologists (P <0.05). severity experienced are presented in Table D-1 in Additional file 4. Nielsen invited 10,791 individuals to be screened for eligi- Patient and physician comparisons bility for the physician study through email invitation. A Figure 2 also presents bother estimates for patients com- total of 466 individuals accessed the survey screener, 396 pared to physicians. For patients, the most bothersome (85% of those screened) were eligible, 394 (99%) consented item was painful, inflamed, or broken skin, followed to participate, and 300 (76%) completed the survey, com- closely by joint pain, soreness, or tenderness. The least prising 150 rheumatologists and 150 dermatologists. Table bothersome item to patients was difficulty choosing D-2 in Additional file 4 presents characteristics of the 300 clothing. Unlike physicians, patients were as bothered by physicians who completed the survey. Physicians were also painful, inflamed, or broken skin as they were by joint asked which of the 20 items their patients reported most pain, soreness, or tenderness. Patients were also as both- and least often. The responses are reported separately for ered by difficulty walking as they were by discomfort rheumatologists and dermatologists. Pearson’s chi-squared while doing everyday tasks. Differences between patients tests showed no difference between rheumatologists and and physicians suggest that while physicians may view a dermatologists (at the 5% level) in their responses to most few key items as particularly bothersome and others as of the commonly reported skin and joint symptoms but a less so, patients view more of the items as almost equally statistically significant difference for patient reporting of the bothersome. impact of their symptoms on daily activities. For example, There were also differences among patients, rheumatol- 59% of rheumatologists responded that the most commonly ogists, and dermatologists in their assessment of the reported impact on daily activity was discomfort while bother of items relative to joint pain, soreness, or tender- doing everyday tasks compared with 33% for dermatolo- ness when looking separately at skin symptoms, joint gists. The percentages for the most and least reported items symptoms, and impact on daily activities. Tables E-1 and by patients to the rheumatologists and dermatologists are E-2 in Additional file 5 present the relative bother weights presented in Table D-3 in Additional file 4. for patients and physicians, respectively, organized by item type. Painful, inflamed, or broken skin was the most Relative-bother weights bothersome of all the symptoms for patients. Among skin The bother of items was estimated relative to bother from symptoms, dermatologists assessed embarrassment to be joint pain, soreness, or tenderness, which was assigned a more bothersome relative to joint pain, soreness, or ten- value of 1.00. Bother scores less than 1.00 indicated an derness than did rheumatologists (P < 0.05); however, der- item was less bothersome than joint pain, soreness, or ten- matologists’ assessment of embarrassment was similar to derness; a score greater than 1 indicated that an item was that of patients. Except for embarrassment, patients more bothersome than joint pain, soreness, or tenderness. assessed all other skin symptoms as more bothersome Relative-bother scores are presented in Fig. 2. Since the relative to joint pain, soreness, or tenderness than did phy- differences in responses for the three different patient sicians (P < 0.05). Among joint symptoms, patients types for both rheumatologists and dermatologists were assessed difficulty walking, morning stiffness, fatigue, diffi- mostly small and not statistically significant, Fig. 2 pre- culty dressing, and eye problems to be more bothersome sents pooled data for the three patient types. relative to joint pain, soreness, or tenderness than did ei- ther rheumatologists (P < 0.05) or dermatologists (P <0. Physician specialty comparisons 05). Swelling of fingers or toes was viewed as equally Figure 2 allows comparison of bother estimates for physi- bothersome among patients and rheumatologists but less cians. Both types of physicians assessed joint pain, sore- bothersome among dermatologists than among patients ness, or tenderness as most bothersome and discomfort (P < 0.05) relative to joint pain, soreness, and tenderness. while doing everyday tasks as the next most bothersome. Finally, among impacts on daily activities, patients Furthermore, both assessed nail problems, eye problems, assessed difficulty sleeping and problems with relation- and difficulty choosing clothing as least bothersome. ships to be relatively more bothersome than did physicians However, embarrassment, difficulty with social or leisure (P < 0.05). Discomfort while doing everyday tasks and dif- activities, and flaking skin and redness of skin were per- ficulty with work or school activities were viewed equally ceived relatively more bothersome compared with joint bothersome relative to joint pain, soreness, or tenderness pain, soreness, or tenderness by dermatologists than by across patients and physicians. Husni et al. Arthritis Research & Therapy (2018) 20:102 Page 7 of 11 Fig. 2 Best–worst scaling relative-bother estimates: dermatologists, rheumatologists, and patients (N = 500). Bars for each estimate indicate 95% confidence intervals Patient subgroup comparisons soreness, or tenderness than for patients with a longer On average, younger patients (< 38 years), those with time since diagnosis (see Fig. 3). more severe skin symptoms, and those recently diag- nosed with psoriasis and/or psoriatic arthritis (< 2 years) Discussion had higher relative bother scores compared with joint Because patients with psoriatic disease commonly have pain, soreness, or tenderness for most items. Figures C- both skin and joint symptoms, these symptoms ideally 1–Figure C-11 in Additional file 3 present the results of would be comanaged by both rheumatologists and der- all patient subgroup analyses. The magnitude of differ- matologists. Studies of chronic inflammatory diseases ences in relative bother scores between the patient sub- suggest that optimal treatment should rely on shared group pairs was greatest for time since diagnosis. The decision-making between patients and their physicians most bothersome items were the same for both sub- [27, 28]. Thus, it is important to assess the differing per- groups. However, for patients who were diagnosed less ceptions patients and physician specialists have about than 2 years before the survey, many other items were symptoms associated with various organs involved in a significantly more bothersome relative to joint pain, disease. We compared perceptions of relative bother of Husni et al. Arthritis Research & Therapy (2018) 20:102 Page 8 of 11 Fig. 3 Best–worst scaling relative-bother estimates: time since diagnosis subgroups (N = 200). Bars for each estimate indicate 95% confidence intervals skin and joint symptoms and of activity impairments for patients but not to their physicians. In addition, there patients, rheumatologists, and dermatologists in the US. were differences between the physician specialties, with The most notable difference between the patients and dermatologists being more aware of bother of flaking physicians was that physicians assessed bother to pa- skin or red skin and associated impacts on embarrass- tients highly for a few key items, while patients assessed ment and social and leisure activities. While rheumatol- more items as equally bothersome. Key items perceived ogists and dermatologists were equally aware of bother as bothersome by the physicians were joint pain, sore- of joint symptoms and discomfort doing everyday tasks, ness, or tenderness; discomfort while doing everyday rheumatologists were more aware of the bother of tasks; and difficulty with work or school activities. joint-relatedsymptomssuchasswelling of fingersand These items were all rated > 0.50 relative to 1.00 for toes and difficulty shopping or doing housework or joint pain, soreness, or tenderness, while all other items yard work. in the survey received relative bother ratings of < 0.50. These findings have important implications concern- Patients rated these items highly as well, but also rated ing the management and treatment of patients with other items highly (> 0.50), including itching; flaking psoriatic arthritis and psoriasis. First, both rheumatolo- skin; painful, inflamed, or broken skin; difficulty walk- gists and dermatologists should query patients about the ing; difficulty sleeping; eye problems; fatigue; difficulty severity of their skin and joint symptoms and impact on going shopping or doing housework or yard work; and their daily activities, rather than only on the symptoms morning stiffness. Patients rated painful, inflamed, or related to their specialty. Our results suggest that treat- broken skin as relatively more bothersome (1.03) than ment by both specialists should have as its goal improve- joint pain, soreness, or tenderness (1.0). This was in ment in all skin and joint symptoms for patients with contrast to dermatologists and rheumatologists, who psoriatic involvement of both organ systems, especially rated painful, inflamed, or broken skin at 0.22 and 0.17, for patients for whom symptoms or impairment are respectively; much lower than their rating of joint pain, most severe and/or most bothersome. Specifically, those soreness of tenderness (1.0). Thus, these skin symptoms more recently diagnosed with psoriatic arthritis rated are equally as bothersome as the joint symptoms to most of the items in the survey as equally bothersome. Husni et al. Arthritis Research & Therapy (2018) 20:102 Page 9 of 11 Results from our study are similar to results in two publi- survey items were chosen to reflect symptoms and limita- cations reporting results from a single study that used a dif- tions that patients have reported as important to them. ferent approach to assign patients’ relative importance In this study, we have demonstrated that rheumatolo- weights for different symptoms of psoriatic arthritis [21, gists and dermatologists may differ in their assessment of 22]. In that study, 12 patient research partners with psori- bother of skin symptoms. There are multiple potential atic arthritis identified domains that had the greatest impact reasons for the differences between specialists, including on their lives. A larger group of patients (n = 139) was then physicians’ need to focus on a subset of psoriatic manifes- asked to assign 100 importance points to selected domains, tations given time limitations of single appointments or and these distributions were used to develop relative rank- differences in symptoms mentioned by patients to each ings of the domains. The most important domains identi- type of physician involved in their psoriatic disease care. fied in that study (with at least 50% of patients considering Nevertheless, the greater perception of the bother of skin it a priority) were pain in joints, spine, and skin; skin prob- symptoms by dermatologists and their lesser perception of lems, including itching; fatigue, including being physically the bother of some of the joint-related symptoms might tired, mental fatigue, and lack of energy; and ability to work partially explain the observed delay in referral of their or perform other activities. Similar results were shown in patients for assessment by a rheumatologist [6, 7]. our study for patients. However, corresponding values for physicians were different from those of patients in several Conclusions cases in our study, including a lower rating of the relative Our results also showed that both specialists may differ bother of fatigue. from patients in their assessment of bother of the mani- A study using a BWS approach, similar to the approach festations of psoriatic arthritis. This suggests the need used in our study, for both physicians and patients with for both rheumatologists and dermatologists to ask their acute coronary syndromes [23] showed differences in rela- patients about the bother of all manifestations of psori- tive importance of benefits and risks of antithrombotic atic disease to ensure optimal drug treatment along with therapy for cardiologists and patients. Our study and the other patient management options. Drug treatments study by Yuan et al. [23] indicate the need for physicians available for both psoriatic arthritis and psoriasis have to take into account relative bother to patients of different shown efficacy in alleviating both skin and joint symp- disease manifestations as well as importance of benefits toms. Since both types of symptoms are considered and risks of standard treatment regimens when prescrib- equally bothersome by patients with psoriatic arthritis ing treatment. This is necessary since patients’ perceptions and psoriasis, treatment regimens should be selected may differ from physicians’ perceptions. that can alleviate both types of symptoms, whichever This study has several limitations. One inherent limita- type of specialist is treating the patient. In addition, effi- tion is that the respondents evaluated hypothetical com- cacy of the treatment regimen for relief of both skin and binations of psoriatic arthritis and psoriasis symptoms joint symptoms and functional limitations should be and functional limitations, and their choices do not have carefully monitored, keeping in mind that although per- the same significance as evaluations of actual symptoms. sistent skin inflammation can be reversed, joint damage As in any survey research study, sample representa- cannot. tiveness may be a potential study limitation. Patients self-reported their physician diagnosis of psoriasis and Additional files psoriatic arthritis. It is possible that some patients may not have received this diagnosis. Another limitation was Additional file 1: Survey instrument administered to patients (PDF that the sample was small relative to the population in- 298 kb) vited to participate. It is, therefore, difficult to determine Additional file 2: Survey instrument administered to rheumatologists how representative our sample of patients was or and dermatologists (PDF 189 kb) whether our results are generalizable to all patients with Additional file 3: Results of patient subgroup analyses (DOCX 1800 kb) psoriasis and psoriatic arthritis in the US. The partici- Additional file 4: Patients’ experience with survey items and physicians’ medical experience and experience with survey items. (DOCX 45 kb) pants’ self-reported previous use of injectable or infused Additional file 5: Relative-bother estimates for patients and physicians, drugs was higher than that of patients with psoriasis (~ grouped by survey item type. (DOCX 31 kb) 15%) from a US database study [29], which would be ex- pected for those with psoriatic arthritis. Abbreviations Finally, one must use caution in the interpretation of BWS: Best–worst scaling; RBW: Relative-bother weight; RPL: Random- the study results. They should not be used to indicate the parameters logit; SD: Standard deviation; US: United States level of importance of individual symptoms, but rather the Acknowledgements relative importance of each symptom compared to the The authors gratefully acknowledge Josephine Mauskopf, PhD, and Kate other symptoms included in the study. Nevertheless, the Lothman of RTI Health Solutions for medical writing services. Husni et al. Arthritis Research & Therapy (2018) 20:102 Page 10 of 11 Funding Section 2. Psoriatic arthritis: overview and guidelines of care for treatment Financial support for this study was provided by AbbVie. with an emphasis on the biologics. J Am Acad Dermatol. 2008;58:851–64. 8. Eder L, Thavaneswaran A, Chandran V, Cook R, Gladman DD. Factors Availability of data and materials explaining the discrepancy between physician and patient global The datasets generated and/or analyzed during the current study are assessment of joint and skin disease activity in psoriatic arthritis patients. available from the corresponding author on reasonable request. Arthritis Care Res (Hoboken). 2015;67:264–72. 9. Michelsen B, Kristianslund EK, Hammer HB, Fagerli KM, Lie E, Wierød A, et al. Authors’ contributions Discordance between tender and swollen joint count as well as patient's and Design, study conduct, and financial support for the study were provided by evaluator's global assessment may reduce likelihood of remission in patients AbbVie. AbbVie participated in the interpretation of data, review, and with rheumatoid arthritis and psoriatic arthritis: data from the prospective approval of the abstract. All authors contributed to the development of the multicentre NOR-DMARD study. Ann Rheum Dis. 2017;76:708–11. publication and maintained control over the final content. 10. Desthieux C, Granger B, Balanescu AR, Balint P, Braun J, Canete JD, et al. MEH and AF guided symptom selection for the survey instrument, Determinants of patient-physician discordance in global assessment in interpreted the data, and revised the manuscript for important intellectual psoriatic arthritis: a multicenter European study. Arthritis Care Res content. BH designed the study, led the analyses, interpreted the data, and (Hoboken). 2017;69:1606–11. revised the manuscript for important intellectual content. RS provided input 11. Lindström Egholm C, Krogh NS, Pincus T, Dreyer L, Ellingsen T, Glintborg B, on the study design and analyses, interpreted the data, and revised the et al. Discordance of global assessments by patient and physician is higher manuscript for important intellectual content. JP and JS conducted the in female than in male patients regardless of the physician's sex: data on analyses, interpreted the data, and revised the manuscript for important patients with rheumatoid arthritis, axial spondyloarthritis, and psoriatic intellectual content. AG secured funding, provided input on the study design arthritis from the DANBIO Registry. J Rheumatol. 2015;42:1781–5. and analyses, interpreted the data, and revised the manuscript for important 12. Kavanaugh A, Helliwell P, Ritchlin CT. Psoriatic arthritis and burden of disease: intellectual content. All authors read and approved the final manuscript. patients perspectives from the population-based multinational assessment of psoriasis and psoriatic arthritis (MAPP) survey. Rheumatol Ther. 2016;3:91–102. Ethics approval and consent to participate 13. Flynn TN, Louviere JJ, Peters TJ, Coast J. Best-worst scaling: what it can do This study was approved by RTI International’s Office of Research Protection for health care research and how to do it. J Health Econ. 2007;26:171–89. (ID 13967). All respondents provided informed consent at the time of 14. Louviere JJ, Flynn TN, Marley AAJ. Best-worst scaling: theory, methods, and completing the survey. applications. Cambridge: Cambridge University Press; 2015. 15. Nolla JM, Rodríguez M, Martin-Mola E, Raya E, Ibero I, Nocea G, et al. Competing interests Patients’ and rheumatologists’ preferences for the attributes of biological MEH is a consultant to AbbVie and Janssen, and has served on advisory agents used in the treatment of rheumatic diseases in Spain. Patient Prefer boards for AbbVie, Celgene, Genentech, Bristol-Myers Squibb, Lilly, Pfizer, Adherence. 2016;10:1101–13. eCollection 2016 Novartis, and Janssen. AF is a speaker as well as a consultant to AbbVie, and 16. Umar N, Yamamoto S, Loerbroks A, Terris D. Elicitation and use of patients’ has served as a researcher for Mallinkrodt, Roche, and AbbVie. BH and JS are preferences in the treatment of psoriasis: a systematic review. Acta Derm full-time employees of RTI Health Solutions, which has received consulting Venereol. 2012;92:341–6. fees from AbbVie to partner on this research. JP was a full-time employee of 17. Kauf TL, Yang JC, Kimball AB, Sundaram M, Bao Y, Okun M, et al. Psoriasis RTI Health Solutions when this research was conducted. RS and AG are full- patients’ willingness to accept side-effect risks for improved treatment time AbbVie employees and own AbbVie stock. efficacy. Dermatolog Treat. 2015;26:507–13. 18. Hauber AB, Gonzalez JM, Schenkel B, Lofland J, Martin S. The value to patients of reducing lesion severity in plaque psoriasis. J Dermatolog Publisher’sNote Treat. 2011;22:266–75. Springer Nature remains neutral with regard to jurisdictional claims in 19. Basra MK, Fenech R, Gatt RM, Salek MS, Finlay AY. The Dermatology Life published maps and institutional affiliations. Quality Index 1994-2007: a comprehensive review of validation data and clinical results. Br J Dermatol. 2008;159:997–1035. Author details 20. Stamm TA, Nell V, Mathis M, Coenen M, Aletaha D, Cieza A, et al. Rheumatology Department, Cleveland Clinic Foundation, Cleveland, OH, Concepts important to patients with psoriatic arthritis are not USA. Dermatology and Pathology Department, Cleveland Clinic Foundation, adequately covered by standard measures of functioning. Arthritis Cleveland, OH, USA. RTI Health Solutions, 3040 Cornwallis Road, Post Office Rheum. 2007;57:487–94. Box 12194, Research Triangle Park, NC 27709-2194, USA. AbbVie, North 21. Gossec L, de Wit M, Kiltz U, Braun J, Kalyoncu U, Scrivo R, et al. A patient- Chicago, IL, USA. 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Arthritis Research & TherapySpringer Journals

Published: May 31, 2018

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