psoriasis

Perception of Disease and Doctor-Patient RelationshipExperienced by Patients with PsoriasisA 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 Section of Dermatology, University of Padua, Padua, Italy

2 Section of Dermatology, University of Verona, Verona, Italy

3 Institute of Dermatology San Gallicano, IRCCS, Rome, Italy

4 Department of Geo-economics and Statistical Studies, University of Rome La Sapienza, Rome, Italy

5 Faculty of Psychology I, University of Rome La Sapienza, Rome, Italy

6 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 haveinvestigated 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, psy-

chologists, 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 derma-

tologists 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 wereunable 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 asincomprehensible, 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 communica-

tion.[1-3] Psoriasis is an inflammatory disease that often appears

ORIGINAL RESEARCH ARTICLE Am J Clin Dermatol 2009; 10 (5): 325-3301175-0561/09/0005-0325/$49.95/0 2009 Adis Data Information BV. All rights reserved.

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 re-

lationship are perceived by patients,[12-16] whilst some studies

have pointed out that psoriasis is associated with high treat-

ment dissatisfaction and doctor shopping.[17,18] This empha-

sizes 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 discus-

sions 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 lim-

ited extent, quantitatively, patients expectations regarding the

patient-physician relationship.

Patients and Methods

A discussion agenda for focus group meetings was orga-

nized by a group of sociologists, psychologists, educators,

researchers, and clinicians active in the field of psychodermato-

logy. 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 psy-

chologist 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

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 pa-

tients with psoriasis. Patient discussions were focused on the

emotional distress caused by the disease and on the patient-

doctor 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 receiv-

ing systemic treatments for psoriasis. Three centers were

smaller private or public dermatology clinics. The ques-

tionnaire 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 age44 years; 182 males and 118 females), of whom 122 were hospi-

talized 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 educa-tional level, and only 9.3% held a bachelors degree. Themajority of patients (n = 245) were interviewed at dedicatedpsoriasis clinics.Most patients hadmoderate to severe psoriasis

(79.7%), with a body surface area of 10% involved and aPsoriasis Area and Severity Index (PASI) score of 10. Symp-toms suggestive of psoriatic arthritis were present in 38.3%of patients. Approximately 70% of patients had had psoriasisfor at least 6 years and around 50% for more than 10 years.Co-morbidities were present in around 80% of patients, withthe most common being arterial hypertension (59.7%) followed

326 Linder et al.

2009 Adis Data Information BV. All rights reserved. Am J Clin Dermatol 2009; 10 (5)

by diabetes mellitus (16.1%), heart disease (12.9%), and thyroiddiseases (9.7%). At the time of the interview, 99.3% of patientswere 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

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 describedtheir emotive reactions to the disease as anxiety, exaspera-

tion, and mental discomfort (27%). Interestingly, 38% of pa-tients 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 only1.310% 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 (in-

cluding the physician) were unable to understand and share

their experience. In particular, 83% of patients felt that othersbarely understood them or did not understand them at all, with

65% of patients reporting that someone can share the feelingof 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

More than half the patients (54.6%) had been seen by threeor more dermatologists before consulting their current treat-

ment 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 pharmacologicaltreatment 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%) feltthey needed more information on psoriasis, whereas 30% didnot 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 psycho-

logical problems.

When asked about the desirable qualities of the best der-

matologist, patients stressed that treating physicians should

use simple, everyday language (29.7%), should pay attentionto the patients words (25.7%) and, in order to further their

Table I. Emotions aroused in patients (n= 300) with psoriasis

Emotion No. of patients %

Anger 152 50.7

Annoyance at the inconvenience of the

disease

150 50.0

Irritation 141 47.0

Shame 140 46.7

Anxiety 85 28.3

Disappointment 51 17.0

Submission 50 16.7

Powerlessness 43 14.3

Acceptance 38 12.7

Challenge 29 9.7

None of these 7 2.3

Table II. Other words used by patients (n= 300) to describe emotivereactions to psoriasis

Description No. of patients %

I do not know/I cannot describe it 114 38.0

Anxiety/nervousness/mental discomfort/stress/exasperation/depression

81 27.0

Regret/shame/anger 34 11.3

Resignation/disappointment/the disease isincurable

24 8.0

A quiet acceptance 20 6.7

None 15 5.0

Inability to express my bitterness 10 3.3

Annoyance at wasting time in hospital 9 3.0

Suicidal thoughts 2 0.7

Dirty sensation 2 0.7

Fear 2 0.7

Solitude 1 0.3

Patient Perceptions of Psoriasis and Doctors 327


relationship with patients, physicians should improve their

interpersonal communication techniques and increase their

knowledge of patient psychology (tables IV and V). For pa-

tients 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 patient-

physician relationship. Psoriasis is often experienced by pa-

tients 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 dis-

ease, 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 (alexi-

thymia), although this issue is still under debate.[28,29] None-

theless, 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 diag-

nosis (>10 years) are more likely to develop ambiguous atti-tudes; on the one hand, they express the wish to find a solution,

whatever it may be, and on the other hand, they express some

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 pa-

thophysiology 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 dis-

ease 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 in-

terview (but the listening should be appropriate in both dura-

tion and quality), should use simple and understandable

language as well as proper use ofmetaphors, thereby improving

their skills in supporting the patient and in accepting any

emotional outbursts. We can also infer the need to give cre-

dence 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 III. Aspects of life limited by psoriasis according to the patients

(n= 300)

Aspect of life No. of patients %

Clothing 171 57.0

Social interactions 130 43.3

Personal hygiene 93 31.0

Diet 71 23.7

Loving relationships 67 22.3

Sports 57 19.0

Work 52 17.3

Relationships with friends 43 14.3

No limits 35 11.7

Family relationships 16 5.3

Table IV. Desirable qualities of the ideal dermatologist according to the

patients (n = 300)

Qualities No. of

patients

%

To use simple/everyday language 89 29.7

To pay attention to patients words 77 25.7

To inform patients about a correct lifestyle 50 16.7

To reassure a patient when he/she is verydiscouraged

30 10.0

To be sympathetic about patients transgressions 4 1.3

To accept a patients request to change therapy 2 0.7

328 Linder et al.


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 there-

fore 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 psy-

chosocial aspects of psoriasis have been extensively studied,[13,14,16]

the issue of optimal structuring of short interventional psy-

chodermatologic training sessions for dermatologists treating

patients with psoriasis (as opposed to psychological and educa-

tion 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 dermato-

logists 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 per-

ceptions and needs. Educational interventions, which convey

specific psychological and communication skills to dermato-

logists under controlled conditions, are needed in order to as-

sess 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 psycholo-

gical literature.[23,24] A further limitation of the present study is

that patients were mostly recruited from hospital-based pso-

riasis clinics,[31-33] thus creating a possible bias towards more

severely affected patients with easier access to larger hospitals

with more experienced health personnel. In addition, all face-

to-face interviews were carried out in the centers where patients

were treated, and this may have facilitated the patients ten-

dency to emphasize positive judgments on their treating der-

matologists/center, because such judgments are self-reassuringand ego-syntonic (criticisms imply devaluating ones own fa-

culty 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 symp-

toms and quality-of-life impact, but also their preferences re-

garding 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 com-

munication 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 ta-

ken 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 re-

ceived honoraria for attending advisory boards and as a speaker forAbbott,

Astellas, Centocor, Janssen-Cilag, Merck-Serono, Novartis, Schering-

Plough, and Wyeth. Dr A. Giannetti has received honoraria for attending

advisory boards fromAbbott, Astellas,Merck-Serono,Novartis, Schering-

Plough, and Wyeth. Drs E. DallOlio and P. Gisondi have no conflicts of

interest that are directly relevant to the contents of this study.

Table V. Aspects of dermatologists knowledge that patients (n =300) feltcould be increased to improve the physician-patient relationship

Aspects of knowledge No. of

patients

%

Patient psychology 151 50.3

Interpersonal communication techniques 81 27.0

Non-pharmacologic therapy 65 21.7

Other 1 0.3

Patient Perceptions of Psoriasis and Doctors 329


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Correspondence: Prof. Giampiero Girolomoni, Section of Dermatology,

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E-mail: [email protected]

330 Linder et al.


Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.

Perception of Disease and Doctor-Patient &!QJ;Relationship Experienced by Patients &!QJ;with PsoriasisAbstractBackgroundPatients and MethodsResultsPatient DemographicsPatient Perception of PsoriasisPatient-Physician Relationship

DiscussionConclusionsAcknowledgmentsReferences

psoriasis

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