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

Abstract

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. To assess how psoriasis and its treatments are subjectively experienced by patients as well as patient expectations with regard to the patient-physician relationship. 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. 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. 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.

Self-management in patients with psoriasis

“…12,14 This attention to patient expectations will further strengthen the doctor-patient relationship and positively impact patients' views of treatment outcomes. 15,16 Moreover, by using a patient-centered approach, self-management approaches can be tailored to patients' specific needs, desires, and capabilities.…”

“…The importance of a well established doctor-patient relationship on a patients' perception of disease and treatment outcomes has been repeatedly highlighted. 15,16 Patients attribute satisfaction with their physician to their perceptions of physician friendliness and caring. 17 Many patients want to be involved in decisions regarding their care and be empowered by their doctors to take control of their disease.…”

Psoriazis Hastalarının Hastalıklarıyla İlgili Bilgi, İnanış ve Tutumları

“…Çalışmamızda hastaların %78,4'ü doktorunun ilgisinden memnun olduğunu, %51,4'ü doktorun kendileri için yeterli bilgi verdiğini ifade etmişti. Linder ve ark yaptıkları çalışmada hastalarının dermatologlardan en fazla bekledikleri tavrın basit günlük dil kullanımı ve hastayı dinlemeleri olarak belirtmişlerdir 14 . Çalışmamızdaki hastaların çoğunluğu (%61,2) beş yıldan uzun bir süredir psoriasis hastası idi ve %62,2'si psoriasis hakkında yeterli bilgisi olmadığını düşünüyordu.…”

“…Bu hastalık hakkında bilgi sahibi olmak hastaların tedaviye daha çok katılımını, hastalığı kontrol altına alabilmelerini ve tetikleyici faktörlerden uzak kalmalarını sağlar, anksiyete ve stresini azaltabilir 12,13 . Düzenli olarak yeni bilgiler edinen ve tedavi seçeneklerini bilen hastaların daha az çaresizlik hissine kapıldığı görülmüştür 14,15 . Biz bu çalışmada kliniğimize başvuran psoriasis hastalarının hastalık ve tedavi yöntemleri hakkındaki bilgilerini sorguladık, hastalıkla ilgili görüş ve inanışlarını değerlendirdik.…”

Importance of Psychosomatic Approach For Dermatological Diseases

“…Psoriasis hastalar taraf›ndan kavranmas› zor, tedavisi olmayan ve kontrol edilemeyen bir hastal›k olarak tan›mlanm›fl-t›r. Hastalar›n yar›s›ndan fazlas› hekimlerinin onlar› daha fazla dinlemesini beklediklerini, hekimin basit bir dil kullanmas›-n›, psikolojik sorunlar› kavrama ve iletiflim becerilerini artt›r-mas› gerekti¤ini belirtmifllerdir 22 . Dermatoloji kliniklerine baflvuran hastalar›n %40-80'inde önemli psikiyatrik sorunlar saptand›¤› bildirilmifltir.…”