ORIGINAL RESEARCH ARTICLE

Am J Clin Dermatol 2009; 10 (5): 325-330 1175-0561/09/0005-0325/$49.95/0

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Perception of Disease and Doctor-Patient Relationship Experienced by Patients with Psoriasis

A Questionnaire-Based Study
Dennis Linder,1 Elena DallOlio,2 Paolo Gisondi,2 Enzo Berardesca,3 Emilia De Gennaro,4 Angelo R. Pennella,5 Alberto Giannetti,6 Andrea Peserico1 and Giampiero Girolomoni2
1 2 3 4 5 6 Section of Dermatology, University of Padua, Padua, Italy Section of Dermatology, University of Verona, Verona, Italy Institute of Dermatology San Gallicano, IRCCS, Rome, Italy Department of Geo-economics and Statistical Studies, University of Rome La Sapienza, Rome, Italy Faculty of Psychology I, University of Rome La Sapienza, Rome, Italy Section of Dermatology, University of Modena, Modena, Italy

Abstract

Background: Many studies have addressed the impact of psoriasis on quality of life, but few studies have investigated patient perception of the disease or the patient-physician relationship. As with most chronic diseases, improvement in the patient-physician relationship may be important in the proper management of patients with psoriasis. Objectives: To assess how psoriasis and its treatments are subjectively experienced by patients as well as patient expectations with regard to the patient-physician relationship. Methods: A discussion agenda for focus group meetings was organized by a group of sociologists, psychologists, educators, researchers, and clinicians active in the field of psychodermatology. Four meetings were held in Northern and Central Italy and participants included one moderator and either eight dermatologists or eight patients. Discussions were based on a predefined agenda and included: (i) the psychological representation of psoriasis; (ii) the hetero- and self-perception of the patient; (iii) the patient-physician relationship; and (iv) the development of an educational intervention for dermatologists in order to improve the patient-physician relationship. A questionnaire, based on the information gathered at the focus groups, was administered to 323 patients with moderate to severe chronic plaque psoriasis from 17 dermatology clinics throughout Italy. Results: Three hundred patients completed the questionnaire. Psoriasis elicited anger, annoyance at the inconvenience of the disease, and irritation in approximately 50% of the patients, whilst 38% of patients were unable to describe their emotional state. Aspects of life that were limited by psoriasis included clothing (57%), social interactions (43%), and personal hygiene (31%). The disease was often seen by patients as incomprehensible, incurable, and uncontrollable. More than half of the patients stressed their need to be listened to by the treating physician, and their wish that the physician should use simple language and should improve their psychological skills and interpersonal communication techniques. Conclusions: Dermatologists need to convey to patients with psoriasis the feeling of understanding the disease, of hope about its curability, and the perception of control. These elements should be taken into account when treating patients and whenever educational interventions are planned.

Background The importance of improving physician communication skills and management of psychological aspects in chronic

disease has been repeatedly highlighted. However, little is known about how to optimize the psychological training of physicians in order to improve patient-physician communication.[1-3] Psoriasis is an inflammatory disease that often appears

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between the ages of 20 and 30 years and runs a chronic relapsing course. Co-morbidities of psoriasis, including cardiovascular disease and psoriatic arthritis, have been attracting interest, as has its detrimental effect on quality of life and associated psychiatric morbidity.[4,5] Many studies have confirmed the high impact of the disease on quality of life, including social, emotional and sexual aspects.[6-11] However, few studies have investigated how the disease and the patient-physician relationship are perceived by patients,[12-16] whilst some studies have pointed out that psoriasis is associated with high treatment dissatisfaction and doctor shopping.[17,18] This emphasizes the need to improve the patient-physician relationship and the communication skills of physicians. Given the limited data available, qualitative results are warranted.[19,20] In recent times, focus group methodology, which is widely employed in social, ethnographic, and marketing research, has found increasing application in health research.[21-24] Focus group methodology is an assessment technique based on the discussions of a small group of people, in the presence of one or more moderators, whereby the discussion is focused on a subject to be investigated in depth.[23] This methodology has been used previously in only a few studies in patients with psoriasis.[15,25-27] In particular, a Swedish study used focus group discussions to provide information on the patients perspective of pruritus,[25,26] and to assess patients preferences regarding formulations of topical drugs, resulting in the conclusion that solutions and foams may improve adherence to topical therapy.[27] The aim of the present study was to assess how psoriasis and its treatments are subjectively experienced by patients and dermatologists, as well as to assess qualitatively and, to a limited extent, quantitatively, patients expectations regarding the patient-physician relationship. Patients and Methods A discussion agenda for focus group meetings was organized by a group of sociologists, psychologists, educators, researchers, and clinicians active in the field of psychodermatology. Four meetings of approximately 3 hours each were held in academic centers in Northern and Central Italy. Participants included one moderator and either eight dermatologists or eight patients. In all cases, the moderator was a clinical psychologist who directed the group based on a predefined agenda. For the focus group discussion, patients were selected based on their age (range 2472 years) and sex (four males and four females), as well as interest and willingness to participate. Discussions were recorded and analyzed. Relevant subjects discussed during the meetings included: (i) the psychological
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representation of psoriasis; (ii) the hetero- and self-perception of the patient; (iii) the patient-physician relationship; and (iv) the development of an educational intervention for dermatologists in order to improve the patient-physician relationship. Group discussions with dermatologists were focused on describing the major features, clinical symptoms, and course of psoriasis, and secondly to illustrate the emotional reactions observed in patients with psoriasis. Patient discussions were focused on the emotional distress caused by the disease and on the patientdoctor relationship from the technical and emotional perspective. A questionnaire (see Supplemental Digital Content 1, http:// links.adisonline.com/DY2/A1), translated from Italian), which was based on the information gathered at the focus groups and developed by clinicians and researchers who attended the meetings, was administered anonymously to 323 patients (184 males and 139 females) from 17 dermatology clinics throughout Italy. Patients included were those consecutively admitted to the clinics and who agreed to participate. Fourteen of these clinics were hospital-based centers adhering to the Psocare national registry, which registers all patients receiving systemic treatments for psoriasis. Three centers were smaller private or public dermatology clinics. The questionnaire was administered by trained interviewers during face-to-face interviews. Informed consent was obtained prior to interviews.

Results
Patient Demographics

The questionnaire was completed by 300 patients (aged 1885 years; mean SD age 51.2 28.7 years; median age 44 years; 182 males and 118 females), of whom 122 were hospitalized for psoriasis and 178 were interviewed as outpatients. Around half of the patients had a low to medium academic qualification; 48% had elementary school or medium educational level, and only 9.3% held a bachelors degree. The majority of patients (n = 245) were interviewed at dedicated psoriasis clinics. Most patients had moderate to severe psoriasis (79.7%), with a body surface area of 10% involved and a Psoriasis Area and Severity Index (PASI) score of 10. Symptoms suggestive of psoriatic arthritis were present in 38.3% of patients. Approximately 70% of patients had had psoriasis for at least 6 years and around 50% for more than 10 years. Co-morbidities were present in around 80% of patients, with the most common being arterial hypertension (59.7%) followed
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by diabetes mellitus (16.1%), heart disease (12.9%), and thyroid diseases (9.7%). At the time of the interview, 99.3% of patients were receiving treatment for psoriasis, including cyclosporine (ciclosporin) [35.6%], acitretin (14.7%), methotrexate (2.7%), topical corticosteroids, and/or vitamin D derivatives (78.1%).
Patient Perception of Psoriasis

Table II. Other words used by patients (n = 300) to describe emotive reactions to psoriasis Description I do not know/I cannot describe it Anxiety/nervousness/mental discomfort/stress/ exasperation/depression Regret/shame/anger Resignation/disappointment/the disease is incurable A quiet acceptance None Inability to express my bitterness Annoyance at wasting time in hospital Suicidal thoughts Dirty sensation Fear Solitude No. of patients 114 81 34 24 20 15 10 9 2 2 2 1 % 38.0 27.0 11.3 8.0 6.7 5.0 3.3 3.0 0.7 0.7 0.7 0.3

The main emotional responses elicited by psoriasis were anger (50.7%), annoyance at the inconvenience of the disease (50.0%), and irritation (47.0%) [table I]. Patients also described their emotive reactions to the disease as anxiety, exasperation, and mental discomfort (27%). Interestingly, 38% of patients interviewed were unable to describe their emotional state (table II). More than 50% of the patients with psoriasis for >10 years reported an emotional response, in contrast to only 1.310% of patients who had had psoriasis for 19 years. There appeared to be no correlation between the severity of psoriasis and the emotional response, although it should be noted that most of the patients had moderate to severe disease. No correlation was identified between the type of emotions elicited by the disease and age, sex, disease severity, or level of education. In addition, the origin of the patient (outpatient vs inpatient clinics, public or private setting) did not influence his or her response. The survey showed that patients believed that others (including the physician) were unable to understand and share their experience. In particular, 83% of patients felt that others barely understood them or did not understand them at all, with 65% of patients reporting that someone can share the feeling of the disease only if he/she has it and lives it. Patients reported

that psoriasis limited their life, particularly with regard to clothing, social relationships, and personal hygiene (table III).

Patient-Physician Relationship

Table I. Emotions aroused in patients (n = 300) with psoriasis Emotion Anger Annoyance at the inconvenience of the disease Irritation Shame Anxiety Disappointment Submission Powerlessness Acceptance Challenge None of these
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No. of patients 152 150 141 140 85 51 50 43 38 29 7

% 50.7 50.0 47.0 46.7 28.3 17.0 16.7 14.3 12.7 9.7 2.3

More than half the patients (54.6%) had been seen by three or more dermatologists before consulting their current treatment center. The main reason for changing physician was a lack of satisfaction with treatments prescribed by previous dermatologists (70%). In general, patients assessed the physicians approach as friendly (65.7%), sympathetic (38.7%), and welcoming (35.0%), and the majority of patients reported to be fairly satisfied (54.7%) or very satisfied (32.0%) with the pharmacological treatment they were receiving at the time of the interview. Roughly half of the patients had learned at first diagnosis that psoriasis cannot be cured definitively, and had received some information regarding therapeutic options. For at least half of the patients, this information was fairly exhaustive or even very exhaustive. Around one-third of patients (35%) felt they needed more information on psoriasis, whereas 30% did not want to know more, expressing some sort of resignation. The patients reported that dermatologists were, in the large majority of cases, generally able to understand their psychological problems. When asked about the desirable qualities of the best dermatologist, patients stressed that treating physicians should use simple, everyday language (29.7%), should pay attention to the patients words (25.7%) and, in order to further their
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Table III. Aspects of life limited by psoriasis according to the patients (n = 300) Aspect of life Clothing Social interactions Personal hygiene Diet Loving relationships Sports Work Relationships with friends No limits Family relationships No. of patients 171 130 93 71 67 57 52 43 35 16 % 57.0 43.3 31.0 23.7 22.3 19.0 17.3 14.3 11.7 5.3

relationship with patients, physicians should improve their interpersonal communication techniques and increase their knowledge of patient psychology (tables IV and V). For patients with recalcitrant disease, it appeared to be very important that the physician continued to pay attention to the therapeutic alliance between patient and physician. Discussion In this study, we assessed how psoriasis and its treatments are subjectively experienced by patients, and gained some insight into patients expectations with regard to the patientphysician relationship. Psoriasis is often experienced by patients as a foreign entity, not belonging to the self, which the patient would ideally erase or destroy. Moreover, psoriasis appears as extremely tenacious, unforeseeable in its behavior, and able to escape any attempt to control it.[12] The information frequently given to patients, that psoriasis is an incurable disease, is experienced as a definitive verdict that cannot be changed and feels, because of its incomprehensibility, unjust. The feeling of helplessness strengthens the experience of dealing with an erratic, uncontrollable, and bizarre entity that imposes its presence upon the patient. Some authors have claimed that an important aspect of patients with psoriasis is their limited ability to identify and verbally express their emotions (alexithymia), although this issue is still under debate.[28,29] Nonetheless, our finding that a substantial portion of patients claimed to be unable to precisely define their feelings supports this hypothesis. It is also apparent that patients with a longstanding diagnosis (>10 years) are more likely to develop ambiguous attitudes; on the one hand, they express the wish to find a solution, whatever it may be, and on the other hand, they express some
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sort of resignation and acceptance of the disease (which has become part of their lifes history).[30] However, this does not eliminate the anguish, uneasiness, and discomfort of psoriasis. From the patients responses, we can infer that they hope that effective therapies are available and that the disease can be controlled and understood. Patients appear to value their specialists eagerness to deliver understandable information about the disease, their frankness in describing the limitations and likely benefits of available therapies, as well as their readiness to accept expressions of discomfort and other emotions caused by psoriasis. Patients who are continually updated with new information and on the availability of new treatments for psoriasis will be less likely to be affected by feelings of unpredictability and incurability.[12] On the other hand, the need for more understanding should be seen not only as a need for gaining more insight into the pathophysiology and mechanisms of the disease. To understand psoriasis means principally to make sense of the disease, to be able to integrate the experience of being ill into the narrative of ones own existence, thereby gaining a sense of coherence or being able to find meaning in what happens.[31,32] The importance of stressing the narrative dimension of disease has been highlighted for psoriasis[19] and, as a general concept, narrative medicine has already gained longstanding recognition.[33] The current study also emphasizes that the physician should listen to the patient during the medical interview (but the listening should be appropriate in both duration and quality), should use simple and understandable language as well as proper use of metaphors, thereby improving their skills in supporting the patient and in accepting any emotional outbursts. We can also infer the need to give credence to patient-centered medicine, which is characterized by an increased attention to the patients experience rather than the disease, and by an increased role for the patient in decision

Table IV. Desirable qualities of the ideal dermatologist according to the patients (n = 300) Qualities To use simple/everyday language To pay attention to patients words To inform patients about a correct lifestyle To reassure a patient when he/she is very discouraged To be sympathetic about patients transgressions To accept a patients request to change therapy No. of patients 89 77 50 30 4 2 % 29.7 25.7 16.7 10.0 1.3 0.7

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Table V. Aspects of dermatologists knowledge that patients (n = 300) felt could be increased to improve the physician-patient relationship Aspects of knowledge Patient psychology Interpersonal communication techniques Non-pharmacologic therapy Other No. of patients 151 81 65 1 % 50.3 27.0 21.7 0.3

making. It is the clinicians responsibility to find out what the patient wants in order to help them find the right information and to support them in the decision-making process; if the physician disregards the patients understanding of the disease, their compliance with the chosen therapy may be at risk.[34-36] The importance of qualitative research in dermatology, and in particular narrative- and patient-based medicine, has been increasingly emphasized.[19,20,30] The current study may therefore provide an indication on how to direct future research in order to improve psychological and relational aspects in the management of chronic dermatologic disease. Although psychosocial aspects of psoriasis have been extensively studied,[13,14,16] the issue of optimal structuring of short interventional psychodermatologic training sessions for dermatologists treating patients with psoriasis (as opposed to psychological and education interventions for psoriatic patients) has, to our knowledge, never been addressed before. Consequently, the issues raised in this study are worthy of further consideration and systematic research. In particular, the psychological and physical benefit derived from being treated by psychologically trained dermatologists needs to be demonstrated for patients with psoriasis. The current study could also be seen as a preparatory study for potential educational intervention programs for physicians or health personnel treating psoriasis. Such interventions should, as much as possible, take into account patients perceptions and needs. Educational interventions, which convey specific psychological and communication skills to dermatologists under controlled conditions, are needed in order to assess the benefit of such training in terms of improved quality of life for patients, better compliance, better response to therapy, improved patient-reported outcomes, and increased patient satisfaction. Limitations and advantages of focus group methodology have been extensively discussed in the medical and psychological literature.[23,24] A further limitation of the present study is that patients were mostly recruited from hospital-based psoriasis clinics,[31-33] thus creating a possible bias towards more severely affected patients with easier access to larger hospitals
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with more experienced health personnel. In addition, all faceto-face interviews were carried out in the centers where patients were treated, and this may have facilitated the patients tendency to emphasize positive judgments on their treating dermatologists/center, because such judgments are self-reassuring and ego-syntonic (criticisms imply devaluating ones own faculty of judgment). The patients point of view has to be carefully considered, especially when planning treatment strategies.[34] In fact, the patients perspective is important, not only in terms of symptoms and quality-of-life impact, but also their preferences regarding therapy.[26,27] Therefore, psoriasis patient advocacy group activities may be very important in promoting awareness and understanding of the disease, ensuring access to treatment for all patients, and supporting research.

Conclusions The present study has provided some insight into how psoriasis and its treatments are subjectively experienced by patients, as well as patients expectations with regard to the patient-physician relationship. Data from this study suggest that the disease is often seen by patients as incomprehensible, incurable, and uncontrollable. It is apparent that treating physicians need to listen to their patients, use simple language, and improve their psychological skills and interpersonal communication techniques. Moreover, dermatologists need to convey to patients a feeling that the disease can be controlled and understood, and provide hope that effective therapies are available. The perceptions and needs of patients should be taken into account in the management of psoriasis and whenever educational interventions are planned.

Acknowledgments
We thank Wolters Kluwer Health Medical Communications, who provided editorial assistance. This work was supported by an unrestricted grant from Wyeth. Drs D. Linder and E. Berardesca have received honoraria for attending advisory boards from Wyeth. Drs E. De Gennaro and A. Pennella have received grants for speaking for Wyeth. Dr A. Peserico has received honoraria for attending advisory boards and as a speaker for Abbott, Merck-Serono, Schering-Plough, and Wyeth. Dr G. Girolomoni has received honoraria for attending advisory boards and as a speaker for Abbott, Astellas, Centocor, Janssen-Cilag, Merck-Serono, Novartis, ScheringPlough, and Wyeth. Dr A. Giannetti has received honoraria for attending advisory boards from Abbott, Astellas, Merck-Serono, Novartis, ScheringPlough, and Wyeth. Drs E. DallOlio and P. Gisondi have no conflicts of interest that are directly relevant to the contents of this study.
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Correspondence: Prof. Giampiero Girolomoni, Section of Dermatology, Department of Biomedical and Surgical Sciences, University of Verona, Piazzale A. Stefani 1, Verona, 37126, Italy. E-mail: giampiero.girolomoni@univr.it

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