involving the patient: impact of inflammatory skin disease and patient-focused care

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Involving the patient: Impact of inflammatory skin disease and patient-focused care Steven Feldman, MD, PhD, a Shahrad M. Behnam, BS, b Shahdad E. Behnam, BS, c and John Y. M. Koo, MD d Winston-Salem, North Carolina; Portland, Oregon; Irvine, California; and San Francisco, California Atopic dermatitis (AD) and psoriasis are common chronic inflammatory diseases that are associated with significant psychosocial morbidity and a decrease in health-related quality of life (QOL). To better understand the effects of these two diseases on quality of life, as reported in the literature, a review of all English-language articles from 1970 to 2003 was performed using PubMed. Results from these studies and surveys illustrate the profound negative impact exerted by these conditions and the importance of early and appropriate treatment. These concerns can be incorporated into patient management strategies that focus on a new model for healthcare delivery, ‘‘patient-centered care,’’ in which QOL plays an integral role. The impact of AD and psoriasis on physical, social, psychological, and financial aspects of life should not be trivialized and must be considered with the same importance as other chronic conditions. Because psoriasis and AD are chronic conditions that require patient and/or caregiver involvement for optimal management, the concept of patient-centered care with its emphasis on effective two-way communication is particularly important and useful for the clinician. ( J Am Acad Dermatol 2005;53:S78-85.) A topic dermatitis (AD) and psoriasis are two extremely common chronic inflammatory diseases that are associated with significant psychosocial morbidity and a decrease in health- related quality of life (QOL). AD affects both adults and children, with an estimated prevalence of 16% to 23% in children. 1 Psoriasis is a hyperproliferative skin disorder that affects more than 7 million people in the United States, with approximately 260,000 new cases occurring each year. 2,3 Because these skin conditions are nonfatal, their profound impact on overall patient well-being is often underestimated. 4 To better un- derstand the effects of these two diseases on QOL, as reported in the literature, a review of all English- language articles from 1970 to 2003 was performed using PubMed. Results from these studies and surveys were analyzed and are reported herein to illustrate the profound negative impact exerted by these conditions as well as the importance of early and aggressive treatment. These concerns can be incorporated into patient management strategies that focus on a new model for healthcare delivery, ‘‘patient-centered care,’’ in which QOL plays an integral role, also discussed in this article. IMPACT OF ATOPIC DERMATITIS ON HEALTH-RELATED QUALITY OF LIFE Fifty percent of AD cases begin in infancy, and 80% appear before 5 years of age. 1 Studies have shown that only one third of patients will continue to be affected by AD beyond infancy, and only one third of these patients will continue into adoles- cence, 5 making management of AD in children a critical issue. Clearly AD has substantial impact on QOL, in- cluding physical well-being, psychological health, social development, and family relationships. 6,7 Kiebert et al 8 studied 318 patients with AD, aged 4 to 70 years, and found that the psychological and social disability experienced by AD patients is com- parable to that faced by patients with type 2 diabetes or hypertension. In fact, adult patients with AD From the Wake Forest University School of Medicine, Winston- Salem a ; Oregon Health Sciences and University, Portland b ; University of California, Irvine c ; and San Francisco Medical Center, Psoriasis Treatment Center, San Francisco. d This article is part of a supplement supported by Connetics Corp, Palo Alto, California. Disclosure: Dr Feldman has received support from Roche, Amgen, Biogen, Bristol-Myers Squibb, Centocor, Fujisawa, Galderma, Genentech, and GlaxoSmithKline and has served as a consul- tant to Connetics Corp. Drs Behnam and Behnam have no financial interest or competing interests in the subject matter of this article. Dr Koo has been a clinical researcher, consultant, and speaker for Allergan, Amgen, Biogen, Bristol-Myers Squibb, Centocor, Connetics, Elan, Fujisawa, Galderma, Genentech, GlaxoSmithKline, ICN, Novartis, and Roche. The opinions ex- pressed in this article are his own and do not represent the view of any of the companies with which he is affiliated. Reprint requests: Steven Feldman, MD, PhD, Wake Forest University School of Medicine, Medical Center Boulevard, Winston-Salem, NC 27157-1071. E-mail: sfeldman@wfubmc. edu. 0190-9622/$30.00 ª 2005 by the American Academy of Dermatology, Inc. doi:10.1016/j.jaad.2005.04.033 S78

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Page 1: Involving the patient: Impact of inflammatory skin disease and patient-focused care

Involving the patient: Impact of inflammatoryskin disease and patient-focused care

Steven Feldman, MD, PhD,a Shahrad M. Behnam, BS,b Shahdad E. Behnam, BS,c and John Y. M. Koo, MDd

Winston-Salem, North Carolina; Portland, Oregon; Irvine, California; and San Francisco, California

Atopic dermatitis (AD) and psoriasis are common chronic inflammatory diseases that are associated withsignificant psychosocial morbidity and a decrease in health-related quality of life (QOL). To betterunderstand the effects of these two diseases on quality of life, as reported in the literature, a review of allEnglish-language articles from 1970 to 2003 was performed using PubMed. Results from these studies andsurveys illustrate the profound negative impact exerted by these conditions and the importance of earlyand appropriate treatment. These concerns can be incorporated into patient management strategies thatfocus on a new model for healthcare delivery, ‘‘patient-centered care,’’ in which QOL plays an integral role.The impact of AD and psoriasis on physical, social, psychological, and financial aspects of life should notbe trivialized and must be considered with the same importance as other chronic conditions. Becausepsoriasis and AD are chronic conditions that require patient and/or caregiver involvement for optimalmanagement, the concept of patient-centered care with its emphasis on effective two-way communicationis particularly important and useful for the clinician. ( J Am Acad Dermatol 2005;53:S78-85.)

Atopic dermatitis (AD) and psoriasis are twoextremely common chronic inflammatorydiseases that are associated with significant

psychosocial morbidity and a decrease in health-related quality of life (QOL). AD affects both adultsand children, with an estimated prevalence of 16% to23% in children.1 Psoriasis is a hyperproliferative skindisorder that affectsmore than 7million people in theUnited States, with approximately 260,000 new casesoccurring each year.2,3 Because these skin conditions

From the Wake Forest University School of Medicine, Winston-

Salema; Oregon Health Sciences and University, Portlandb;

University of California, Irvinec; and San Francisco Medical

Center, Psoriasis Treatment Center, San Francisco.d

This article is part of a supplement supported by Connetics Corp,

Palo Alto, California.

Disclosure: Dr Feldman has received support from Roche, Amgen,

Biogen, Bristol-Myers Squibb, Centocor, Fujisawa, Galderma,

Genentech, and GlaxoSmithKline and has served as a consul-

tant to Connetics Corp. Drs Behnam and Behnam have no

financial interest or competing interests in the subject matter

of this article. Dr Koo has been a clinical researcher, consultant,

and speaker for Allergan, Amgen, Biogen, Bristol-Myers Squibb,

Centocor, Connetics, Elan, Fujisawa, Galderma, Genentech,

GlaxoSmithKline, ICN, Novartis, and Roche. The opinions ex-

pressed in this article are his own and do not represent the

view of any of the companies with which he is affiliated.

Reprint requests: Steven Feldman, MD, PhD, Wake Forest

University School of Medicine, Medical Center Boulevard,

Winston-Salem, NC 27157-1071. E-mail: sfeldman@wfubmc.

edu.

0190-9622/$30.00

ª 2005 by the American Academy of Dermatology, Inc.

doi:10.1016/j.jaad.2005.04.033

S78

are nonfatal, their profound impact on overall patientwell-being is often underestimated.4 To better un-derstand the effects of these two diseases on QOL, asreported in the literature, a review of all English-language articles from 1970 to 2003 was performedusing PubMed. Results from these studies andsurveys were analyzed and are reported herein toillustrate the profound negative impact exerted bythese conditions as well as the importance of earlyand aggressive treatment. These concerns can beincorporated into patient management strategiesthat focus on a new model for healthcare delivery,‘‘patient-centered care,’’ in which QOL plays anintegral role, also discussed in this article.

IMPACT OF ATOPIC DERMATITIS ONHEALTH-RELATED QUALITY OF LIFE

Fifty percent of AD cases begin in infancy, and80% appear before 5 years of age.1 Studies haveshown that only one third of patients will continue tobe affected by AD beyond infancy, and only onethird of these patients will continue into adoles-cence,5 making management of AD in children acritical issue.

Clearly AD has substantial impact on QOL, in-cluding physical well-being, psychological health,social development, and family relationships.6,7

Kiebert et al8 studied 318 patients with AD, aged4 to 70 years, and found that the psychological andsocial disability experienced by AD patients is com-parable to that faced by patients with type 2 diabetesor hypertension. In fact, adult patients with AD

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scored lower than adult patients with hypertensionon the social functioning domain of the MedicalOutcomes Study Short Form-36 Health Survey(SF-36) and lower than adult patients with diabeteson the mental health component of the SF-36.A lower score on these indices means decreasedQOL. This suggests that the popularly held notionthat systemic disorders are more detrimental thanskin disorders may not be a true indicator of theoverall impairment of QOL or psychological stateexperienced by the patient.7-9

AD has a bidirectional relationship with stress.Stress in AD leads to increased circulating levels ofinflammatory lymphocytes expressing various cyto-kines, resulting in exacerbation of AD.10,11 In asurvey of 4576 patients with AD by Griesemer,12

70% reported that stress predictably worsened theirAD. Even stress from natural disasters can worsenAD. Kodama et al13 examined 1457 patients with ADafter the 1995 Great Hanshin Earthquake in Japanand showed that those who had higher perceivedlevels of stress experienced increased exacerbationof their AD. Thirty-eight percent of those who livedat the center of the earthquake (where the mostdamage to buildings occurred) and experiencedhigh stress reported aggravation of AD symptomscompared with only 7% of those who lived on theoutskirts (where no damage to buildings occurred)and did not experience stress. In return, exacerba-tion of AD leads to increased emotional stress,worsening of physical symptoms, and constantscratching behavior.

Continuous scratching can be physically disablingand has been associated with severe sleep difficul-ties.14 Sleep problems are very common in ADpatients of all ages and include difficulty fallingasleep, restless sleep, frequent awakenings, andfewer hours of sleep compared with control sub-jects.15 Nighttime awakenings occur in almost 90%of AD infants and are twice as common in ADpreschoolers compared with healthy control sub-jects.16-18 In a study of 44 children with AD betweenthe ages of 5 months and 13 years, 73% had night-time awakenings compared with 22% of controlsubjects.12,14 Similarly, in a study of older childrenaged 5 to 15 years, sleep disturbances were presentin 67% of patients with AD compared with 13% ofhealthy persons.19 In a study of 39 preschoolers withAD, 41% continued to experience sleeping difficul-ties even during remission.20 This suggests that thescratching behavior established during AD flares canbecome a learned behavior and result in sleepdisturbances even during remission.21,22

The constant itching, sleep disturbances, andphysical signs and symptoms of AD have profound

psychological and behavioral effects on children; 3times as many children with AD exhibit risk factorsfor development of behavioral problems, such asclinginess, dependency, and fearfulness, comparedwith matched control subjects.17 In a study byAbsolon et al,19 behavioral, emotional, and relation-ship abnormalities were as high as 50% amongchildren with AD versus 27% of control subjects.19

This rate is comparable to 55% reported for childrenwith hemiplegia and 58% for children with brainstemlesions causing fits.23,24 Adults with AD have higherlevels of anxiety, neuroticism, depression, and hy-pochondriasis. They tend to be introverted andexhibit more problems dealing with anger and hos-tility.25,26 These results show the significant psycho-logical and behavioral impacts of AD on bothchildren and adults.

In addition, AD has grave consequences on theindependence, academic performance, and sociallives of young children. Parents of children withAD are more likely to be overprotective and to limittheir children’s participation in social activities.Consequently, the children become less indepen-dent as they avoid or delay performing importantmilestones, such as attending school or staying withfriends or relatives because of parental concern overproper skin care.27 Additionally, missed days formedical visits and poor concentration stemmingfrom distraction due to physical discomfort, sedationfrom medications, and sleep deprivation can hinderschool performance. Skin symptoms in children aredisfiguring and interfere with acceptance amongpeers. For instance, Lawson et al28 demonstratedthat 60% of children with AD suffered from teasingand bullying. Furthermore, physical symptoms anddiscomfort limit their participation in sports andother physical activities.6,14

Not only does AD influence the psychological andsocial life of patients, it also has a profound impact onthe entire family unit, particularly mothers. Parents ofchildren with AD frequently blame themselves forthe health disorders that afflict their children. ADadversely affects maternal-infant bonding, resultingin irritable infants and insecure, anxious mothers.29

In addition, mothers characterize themselves as be-ing more depressed, hopeless, and overprotectiveand as displaying less positive emotional behaviortoward their infants.18 In the study by Lawson et al,28

of 34 families with AD, 74% described taking care ofan AD child as an extra burden, and 71% describedfeelings of guilt, exhaustion, frustration, resentment,and hopelessness. In fact, two thirds stated theycould not lead a normal life because of restrictions onfood, inability to have pets, and loss of sleep. Morethan one third indicated that having a child with AD

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negatively affected their interpersonal relationships,sports, and leisure activities. Thus the stress, the timecommitment, and the extra burden associated withtaking care of childrenwith AD result in deteriorationof social function and loss of employment, friends,and social support among family members, particu-larly mothers.17

In contrast to the negative effect of AD on familylife, family stresses do not necessarily influence thedisease severity. Gil et al30 studied the effect of familystresses on disease progression in 44 children withAD. They concluded that general chronic stressesand life events, such as birth of a new sibling ormoving, were not associated with increase in diseaseseverity in this sample population.

In addition to the profound physical and psycho-social effects on patients and their family members,AD also exerts a substantial financial impact on thehealthcare economy. In 1993, the overall cost of ADwas estimated to be $364 million.31 Most of the costwas attributed to medical and alternative medicineconsultations, medications, income loss due tomissed days from work, and the need for specialclothing. Su et al32 suggested that it costs more totreat a child with moderate to severe AD than a childwho required hospitalization from asthma.32

Appropriate management of AD at an early stageis significant in preventing the development ofnegative behaviors, such as constant scratching orsleep disorders, even during remission. In additionto pharmacologic therapies, patient education, astrong patient-doctor relationship, and stress reduc-tion are paramount in the optimal management ofAD patients. In a study of 204 families, Staab et al33

illustrated that education was strongly associatedwith the regular use of skin care products andincreased patient confidence in the active manage-ment of their disease. In a study of 258 mothers withAD, the quality of the doctor-patient relationshipwasstrongly associated with adherence to skin care,better patient compliance, and improved manage-ment of their disease.34

Because stress is known to exacerbate symptomsof AD, methods aimed at reducing stress also may beuseful in the management of the disease. In a studyby Schachner et al,35 a group of children with ADwas treated with standard topical care, whereasanother group received 20 minutes of daily massagefor 1 month in addition to topical care. There wasa decrease in the level of anxiety along with sig-nificant clinical improvement of erythema, scaling,lichenification, excoriation, and pruritus in thegroup with daily massage compared with a decreasein scaling only in the control subjects, who usedstandard topical care only. Psychiatric referral may

be useful in relieving stress in patients with stress-induced psychological symptoms.36 Thus appropri-ate education, stress reduction, and a good rapportbetween the physician and patient are central toachieving patient compliance and significant clinicalimprovement.

IMPACT OF PSORIASIS ON HEALTH-RELATED QUALITY OF LIFE

Similar to AD, the physical impact of psoriasis isalso very disabling and is a major contributor topatient morbidity. Studies have reported that theworst aspects of psoriasis are pruritus, scaling, orskin appearance.3,37 These studies further concludedthat disease severity and overall impact depend onthe patient’s subjective degree of impairment, ratherthan the objective clinical measurement of the phy-sician. For example, the patient with psoriasis of onlythe hands would be rated as mild based on the per-centage of body surface area involved, but thefunctional impairment would be great. Because theclinical severity of psoriasis does not always correlatewith the patient’s reported degree of impairment,one must always be cognizant of the substantialmorbidity associated with even the mildest form ofthe disease.38

In addition to physical impairment, psoriasis alsoexerts severe and detrimental social impact. Many ofthe patients experience social rejection and stigma-tization.38,39 Both sexes are affected equally, andthose in the 18- to 45-year age group report the mostdifficulties on social, occupational, and financiallevels.40 In a study of 137 patients with psoriasis,26.3% indicated that people made an effort not totouch them when psoriasis was visible on some partof their body.39 In a study of 100 patients, 19%reported that they had been asked to leave a publicplace, such as a gym or a pool.41 Psoriasis also has asubstantial impact on interpersonal relationships, asevidenced by a survey of 120 patients in which 40.8%reported a decline in sexual activity.42 In addition tooutright rejection, the anticipation or fear of beingrejected or stigmatized disrupted social experiencesto such an extent that these patients avoided socialevents.38,41

Social rejection or its anticipation can have pro-found psychological consequences. Psoriasis pa-tients with such experiences lack confidence andfeel angry, frustrated, and embarrassed.3,43 Many areanxious and depressed,44,45 with a 9.7% prevalenceof a death wish and a 5.5% prevalence of acutesuicidal ideation.46 In fact, there is a direct associa-tion between disease severity and psychosocialimpact of the disease: the more severe the psoriasis,the more the patient will feel embarrassed, ashamed,

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and depressed.3,33,47 Even during periods of remis-sion, patients continue to harbor these feelingsand suffer.42,45 Thus the psychological impact ofpsoriasis results in disruption of work, an increasedneed for psychiatric consultations, and greater useof tobacco, alcohol, tranquilizers, and antidepres-sants.38,41,48,49

The financial impact of psoriasis is substantial. In1993, the overall cost of psoriasis was estimatedbetween $1.6 billion and $3.2 billion, which includedthe cost of care, the time needed for care, and in-terference with work.2,50 A recent study found thatthe direct medical costs associatedwith the treatmentof psoriasis in the United States in 1997 was still quitehigh despite expansion of and advances in treatmentoptions.51 For the 1.4 million individuals with clin-ically significant disease, as defined by the 1971-1974Health and Nutrition Examination Survey (NHANESI) criteria, the total annual direct cost of treatingpsoriasis was estimated to be $649.6 million, includ-ing $30.5 million for hospitalizations, $86.6 millionfor outpatient visits, $27.4 million for photochemo-therapy, $147.9million for dermatologic prescriptiondrugs, and $357.2 million for over-the-counter drugs.This translates to an estimated direct care cost of $452per year for each person with clinically significantpsoriasis and $718 per year for each person withactive and clinically significant psoriasis.

Patients with psoriasis also experience substantialoccupational disability, with men reporting moreimpairment than women.37,40 In a study of 369patients with severe psoriasis, of those personsemployed, 59.3% lost time from work.52 Amongthose patients who were not working, 33.9% statedthat their current unemployment status was due topsoriasis.

Psoriasis patients experience a degree of morbid-ity as severe as that faced by patients with otherchronic medical illnesses. In a study by Rapp et al,53

psoriasis patients reported a decrease in physical andmental functioning that was comparable to thosepatients with cancer, arthritis, heart disease, diabetes,hypertension, and depression. In fact, their scores onthe SF-36 physical and mental components werelower than those of patients with other chronicdiseases, except for patients with congestive heartfailure, depression, and chronic lung diseases. Forty-six percent, 42%, and 32% of psoriasis patientsbelieve that it is the same or better to have diabetes,asthma, and bronchitis, respectively, than psoria-sis.52 In fact, in patients with one of these comorbid-ities, 87%, 80%, and 77% of them said they wouldrather have diabetes, asthma, and bronchitis, respec-tively, than psoriasis.52 This signifies the disablingimpact that psoriasis has on patients’ lives and their

willingness to have other chronic debilitating dis-eases rather than psoriasis.

PATIENT-CENTERED HEALTH CARE ANDTHE IMPORTANCE OF QUALITY OF LIFE

The results of this literature review demonstratethat AD and psoriasis both exert considerable psy-chosocial impact on patients; therefore the physi-cians who treat them must be mindful of this impactand integrate QOL considerations into their clinicalapproach. One way to accomplish this is throughpatient-centered care.

Patient-centered care or medicine refers to‘‘health care that is closely congruent with andresponsive to patients’ wants, needs, and prefer-ences.’’54 Patient-centered medicine has been com-pared and contrasted with evidence-basedmedicine,although ideally these two paradigms of modernmedicine should work together, with physician-patient communication serving to bridge any gap.55

‘‘Evidence-based medicine,’’ a term which enteredthe scientific literature in the 1990s, focuses on usingthe best available evidence from randomized con-trolled trials (RCTs) to plan treatment strategies. Itdiffers from a patient-centered approach in that it isprimarily disease-oriented rather than patient-ori-ented.55 It is also physician-centered in that it is thephysician who is evaluating the evidence and mak-ing the decisions as to the best treatment approach,essentially without much input from the patient. Inaddition, evidence-based medicine typically relieson results from RCTs that, while providing muchvaluable information, often prohibit enrollment ofthe diverse patient types seen in actual clinicalpractice.55 Even when patients seen in the officeclosely match those used in RCTs, the goals, needs,and preferences of individual patients may differ.Communication is required to better integrate phy-sician and patient perspectives.

For most of the history of medicine, physiciansapproached patients with a rather paternalistic atti-tude, in which they decided what was in the bestinterest of the patient, generally with minimal in-put from the patient.54 Since patients’ input was de-valued, there was also little need to share muchinformation with patients about their condition. Anumber of changes in modern society have signifi-cantly altered this traditional physician-patient rela-tionship, and some of these changes have becomereflected in medical law.54

The availability of medical information on theInternet has also changed the physician-patientrelationship; patients now often come into thephysician’s office with questions or ideas based onwhat they have read.56 Many patients in today’s

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society expect to be treated as active participants intheir health care, rather than as passive recipients.Thus, in patient-centered care, the physician willconsider the patient’s needs and feelings and attemptto gain a better understanding of the impact ofmedical decisions on patients’ lives (Table I).57

Therefore the ideal treatment situation is a shareddecisionmade on the basis of the physician’s medicalexpertise and an understanding of the patient’sdesires and goals; perhaps a better term for thisapproach is ‘‘relationship-centered medicine,’’ assuggested by Roter.58 Regardless of the term used,effective two-way communication between the phy-sician and patient is required to optimize care andmaintain high QOL for the patient and is likely toresult in improved treatment compliance.

PATIENT-CENTERED CARE IN PSORIASISAND ATOPIC DERMATITIS TREATMENT

The 1998 National Psoriasis Foundation Patient-Membership survey noted that many patients arefrustrated with the management of their disease andthat physicians may need to improve communicationwith their patients.59 Treatment dissatisfaction iscommon at all levels of psoriasis severity, but isespecially high with more severe disease. In thissurvey-based study, ‘‘severe’’ was defined as psori-asis on more than 10% of the body, erythrodermicpsoriasis, generalized pustular psoriasis, or diseasethat caused difficulty in at least 3 of 4 activities(standing, use of hands, sitting for long periods, orsleeping). In addition, if respondents were beingtreated with psoralen plus ultraviolet A, methotrex-ate, etretinate, acitretin, or cyclosporine, they werealso classified as having severe psoriasis.

Therefore, in adopting the patient-centeredmodel as a clinical approach for the treatmentof psoriasis or AD, the physician must be skillfulin dealing with the many emotions engenderedby these illnesses (Table II). Physicians should beempathetic and educate the patient and, in the caseof a child, the parents about the disease and pro-

Table I. The patient-centered clinical method

Components of patient-centered care:

d Exploring the disease and the illness experienced Understanding the whole persond Finding common ground regarding managementd Incorporating prevention and health promotiond Enhancing the doctor-patient relationshipd Being realistic

From Gray CR. Fam Med 2002;34:644-5. (Reprinted with

permission from the Society of Teachers of Family Medicine

[www.stfm.org]).

vide realistic expectations for treatment, especiallysince complete clearance is not always a reason-able goal.60 Additionally, it is important to involvepatients in the decision-making process regardingtreatment, as this helps to give patients a sense ofcontrol.

The physician may communicate caring bytouching the lesions. This may be particularly impor-tant in children and may help to reduce the sense ofisolation that often accompanies the disorder, as wellas impress upon the patient that the disease is notcontagious. The physician also should be alert forother psychological distress in the patient and family,particularly depression, signs of which include pooreye contact, low energy, and flat or depressed affect.Psoriasis especially can be very frustrating forpatients and physicians alike. Some patients maybe angry and displace this anger onto the physicianwho, in turn, must be prepared and proactive indealing with it. Angry patients tend to beget angryphysicians, and the physician should avoid thiscycle.

Education and communication are keys to pa-tient-centered management of inflammatory skindiseases. The physician may know best about therisks and benefits of treatment, but patients are mostcognizant of how much the disease is affecting theirlives and how tolerant they are of risks. However,patients also need information from their physiciansabout their condition and how best to manage it.As noted by Roter,58 studies consistently indicatethat patients want as much information as possible

Table II. Examples of patient-centered care forthe treatment of psoriasis and atopic dermatitis

Engage in two-way communication

d Be empathic and listen to/learn about how diseaseaffects the patient

d Educate the patient about the disease and providereasonable expectations for treatment and outcomes

d Involve the patient in decision-makingd Communicate care by touching lesionsd Be aware of psychological distress in the patient,especially depression

d Be prepared to manage the angry patientd Avoid transferring feelings of inadequacy regardingtreatment

d Communicate information that is understandable,useful, and helps to motivate patient

d Suggest an Internet site if the patient requestsadditional information

d Suggest membership in the National PsoriasisFoundation and regular visits to the Web site(psoriasis patients)

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Table III. Examples of useful Web sites

Organization Address

Atopic dermatitisAADEczemaNet: www.skincarephysicians.com/eczemanet/index.htmlInformation for patients from the AAD

The National Eczema Society (UK site) www.eczema.orgNational Eczema Association for Science and Education www.nationaleczema.org

PsoriasisNational Psoriasis Foundation www.psoriasis.orgAADPsoriasisNet: www.skincarephysicians.com/psoriasisnet/index.htmInformation for patients from the AAD

Questions & Answers about Psoriasis www.niams.nih.gov/hi/topics/psoriasis/psoriafs.htmInformation from the NIH

AAD, American Academy of Dermatology; NIH, National Institutes of Health.

from their physicians. Such information should beunderstandable, useful, and motivating. For exam-ple, patients want to understand their diagnosis, butboth psoriasis and AD may be difficult to describe.Defining either condition as ‘‘an overactive immunesystem’’ is a fairly simple approach andmakes it clearthat the disease is neither contagious nor a form ofskin cancer.

Patient-centered medicine may prove especiallyvaluable in the treatment of psoriasis because thecondition is chronic and requires patients’ full in-volvement to achieve optimal management. Lifestyleissues, including avoidance of triggers and com-pliance with treatment regimens, have a critical im-pact. In addition, patients often have ‘‘agendas’’that are not fully articulated during the medicalconsultation61; indeed, poor communication andmisunderstandings may lead to general treatmentnoncompliance and poor outcomes.62,63 Noncom-pliance should be a primary concern for the physi-cian; it has been reported to be approximately 40% inpsoriasis patients.64 In fact, noncompliance may begrossly underestimated, because what is perceivedas tachyphylaxis may actually be a reduction incompliance over time or an exacerbation of diseaseunrelated to therapy.65

In general, information tends to reduce ignoranceand isolation, and patients (or parents of youngpatients) can learn from their peers (ie, other affectedindividuals) how to handle social situations in whichthey are confronted about the skin condition andhow not to become ‘‘ignited’’ by others’ ignorance.One way to communicate with other patients withthe same disease is through the Internet. Severaluseful and accurate sources on AD and psoriasis existon the Internet (Table III). For patients with psori-asis, a good source of information is the NationalPsoriasis Foundation, and similar organizations areavailable on AD. However, the physician must be

prepared to address misinformation or misinterpre-tation of information that Internet-savvy patientsmay bring to conversation. For example, a patientmay read about side effects associated with supra-physiologic doses of systemic corticosteroids andconfuse this with the risks associated with topicalcorticosteroids. The physician should also recognizethat individual patients differ in their desire fordetailed information and their willingness to makedecisions concerning treatment.54 Once again, it isimportant to listen to the patient and follow thepatient’s lead.

Treatment regimens and different vehicles can beimportant factors in determining patient compliance.In the United States in particular, patients often wantto see immediate results, and initiating treating with asuperpotent topical steroid in combination with aslower acting agent may be an effective strategy forthese patients. In terms of vehicles or formulations,patients should be provided with the differentoptions that are appropriate for their condition andallowed to decide which they prefer. Characteristicsassociated with vehicle preference include ease ofapplication, time it takes to apply, how well it isabsorbed, how it feels to touch, how it feels on theskin, how it smells, and how much it stains. Ingeneral, foams and solutions are preferred overointments, creams, emollients, and gels.66 For com-bination therapy, patient compliance must be con-sidered; that is, if multiple medications increasetherapy complexity, they may also reduce compli-ance. Fortunately, the faster response and reducedside effects that often accompany combination ther-apy may enhance compliance.

CONCLUSIONSAD and psoriasis are not trivial diseases; patients

suffer much more than generally assumed. AD has abidirectional relationship with stress. For AD, stress

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results in exacerbation of physical symptoms, whichhas negative impact on independence; academicperformance; and social, psychological, and behav-ioral aspects of patients’ lives. These negative con-sequences not only affect patients, but also theirfamilies; especially mothers. Financial burden as-sociated with taking care of AD is also profound.Pharmacologic therapies, education, stress reduc-tion, and a positive doctor-patient relationship play asignificant role in the management of AD.

Similarly, the physical presentation of psoriasisis also very disabling and a similar bidirectionalrelationship exists with social, psychological, andemotional well-being. Patients with psoriasis oftenexperience gross social rejection in public, which hasgreat psychological and emotional consequences,including employment disruption or increased useof alcohol, tobacco, and medications. Such conse-quences can be so profound that a substantialnumber of patients with psoriasis would chooseanother chronic, systemic medical condition ratherthan psoriasis. Thus AD and psoriasis are associatedwith significant morbidity and a decrease in health-related QOL. The impact of these two diseases onphysical, social, psychological, and financial aspectsof life should not be trivialized and must be consid-ered with the same importance as other chronicconditions. Because psoriasis and AD are chronicconditions that require patient and/or caregiverinvolvement for optimal management, the conceptof patient-centered care, with its emphasis on effec-tive two-way communication, is particularly impor-tant and useful for the clinician.

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