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.
Similar content being viewed by others
References
Wolkenstein P, Consoli S, Roujeau JC, et al. The physician-patient relation: reporting a severe disease. Education of a patient suffering from a chronic disease: personalizing medical management. Ann Dermatol Venereol 2002 Oct; 129 (10 Suppl.): S7–10
Kack M, Debart A, Blanchard F. Doctor-patient relationship: disclosure of serious illness, education of patients suffering from chronic illness, personifying medical care. Rev Prat 2006 Jun 15; 56 (11): 1255–61
Poot F, Sampogna F, Onnis L. Basic knowledge in psychodermatology. J Eur Acad Dermatol Venereol 2007 Feb; 21 (2): 227–34
Rosenkranz MA. Substance P at the nexus of mind and body in chronic inflammation and affective disorders. Psychol Bull 2007 Nov; 133 (6): 1007–37
Griffiths CE, Barker JN. Pathogenesis and clinical features of psoriasis. Lancet 2007 Jul 21; 370 (9583): 263–71
Sampogna F, Gisondi P, Tabolli S, et al. Impairment of sexual life in patients with psoriasis. Dermatology 2007; 214 (2): 144–50
Skevington SM, Bradshaw J, Hepplewhite A, et al. How does psoriasis affect quality of life? Assessing an Ingram-regimen outpatient programme and validating the WHOQOL-100. Br J Dermatol 2006 Apr; 154 (4): 680–91
Sampogna F, Tabolli S, Mastroeni S, et al. Quality of life impairment and psychological distress in elderly patients with psoriasis. Dermatology 2007; 215 (4): 341–7
Guenther L, Langley RG, Shear NH, et al. Integrating biologic agents into management of moderate-to-severe psoriasis: a consensus of the Canadian Psoriasis Expert Panel, February 27, 2004. J Cutan Med Surg 2004 Sep-Oct; 8 (5): 321–37
Ortiz A, Yamauchi PS. A treatment strategy for psoriasis: transitioning from systemic therapy to biologic agents. Skinmed 2006 Nov-Dec; 5 (6): 285–8
Mukhtar R, Choi J, Koo JY. Quality-of-life issues in psoriasis. Dermatol Clin 2004 Oct; 22 (4): 389–95, viii
Lamb CA, Fried RG, Feldman SR. Giving patients ‘perceived control’ over psoriasis: advice for optimizing the physician-patient relationship. J Dermatolog Treat 2004 Jun; 15 (3): 182–4
Ginsburg IH. Psychological and psychophysiological aspects of psoriasis. Dermatol Clin 1995 Oct; 13 (4): 793–804
Watson T, de Bruin GP. Impact of cutaneous disease on the self-concept: an existential-phenomenological study of men and women with psoriasis. Dermatol Nurs 2007 Aug; 19 (4): 351–6, 361-4
Tabolli S, Renzi C, Di Pietro C, et al. Satisfaction and critical aspects of inpatients care among patients with psoriasis. Ann Ig 2003 Sep-Oct; 15 (5): 709–15
Ring L, Kettis-Lindblad A, Kjellgren KI, et al. Living with skin diseases and topical treatment: patients’ and providers’ perspectives and priorities. J Dermatolog Treat 2007; 18 (4): 209–18
Stern RS, Nijsten T, Feldman SR, et al. Psoriasis is common, carries a substantial burden even when not extensive, and is associated with widespread treatment dissatisfaction. J Investig Dermatol Symp Proc 2004 Mar; 9 (2): 136–9
Harth W, Gieler U. Der schwer oder nicht behandelbare Problempatient. In: Harth W, Gieler U, editors. Psychomatische Dermatologie. Berlin: Springer Verlag, 2005: 263
Kennedy C. Psoriasis narratives: how qualitative research is of value in dermatology research. Int J Dermatol 2006 Sep; 45 (9): 1107–9
Britten N, Jones R, Murphy E, et al. Qualitative research methods in general practice and primary care. Fam Pract 1995 Mar; 12 (1): 104–14
Barbour RS. Making sense of focus groups. Med Educ 2005 Jul; 39 (7): 742–50
Halcomb EJ, Gholizadeh L, DiGiacomo M, et al. Literature review: considerations in undertaking focus group research with culturally and linguistically diverse groups. J Clin Nurs 2007 Jun; 16 (6): 1000–11
McNally NJ, Phillips DR, Williams HC. Focus groups in dermatology. Clin Exp Dermatol 1998 Sep; 23 (5): 195–200
Barbour RS. The use of focus groups to define patient needs. J Pediatr Gastroenterol Nutr 1999 Apr; 28 (4): S19–22
Amatya B, Nordlind KJ. Focus groups in Swedish psoriatic patients with pruritus. J Dermatol 2008; 35: 1–5
Amatya B, Wennersten G, Nordlind K. Patients’ perspective of pruritus in chronic plaque psoriasis: a questionnaire-based study. J Eur Acad Dermatol Venereol 2008; 22: 822–6
Housman TS, Mellen BG, Rapp SR, et al. Patients with psoriasis prefer solution and foam vehicles: a quantitative assessment of vehicle preference. Cutis 2002; 70: 327–32
Willemsen R, Roseeuw D, Vanderlinden J. Alexithymia and dermatology: the state of the art. Int J Dermatol 2008 Sep; 47 (9): 903–10
Richards HL, Fortune DG, Griffiths CE, et al. Alexithymia in patients with psoriasis: clinical correlates and psychometric properties of the Toronto Alexithymia Scale-20. J Psychosom Res 2005 Jan; 58 (1): 89–96
Michael SR. Integrating chronic illness into one’s life: a phenomenological inquiry. J Holist Nurs 1996 Sep; 14 (3): 251–67
Antonovsky A. Unravelling the mystery of health: how people manage stress and stay well. San Francisco (CA): Jossey-Bass Publishers, 1987
Frankl V. Man’s search for meaning. New York: Simon & Schuster, 1997
Goldstein N. Narrative medicine: a novel approach. Hawaii Med J 2003 Dec; 62 (12): 268
Krahn M, Naglie G. The next step in guideline development: incorporating patient preferences. JAMA 2008 Jul 23; 300 (4): 436–8
Griffiths CE, Iaccarino L, Naldi L, et al. Psoriasis and psoriatic arthritis: immunological aspects and therapeutic guidelines. Clin Exp Rheumatol 2006 Jan-Feb; 24 (1 Suppl. 40): S72–8
Schmitt-Egenolf M. Psoriasis therapy in real life: the need for registries. Dermatology 2006; 213 (4): 327–30
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, Schering-Plough, and Wyeth. Dr A. Giannetti has received honoraria for attending advisory boards from Abbott, Astellas, Merck-Serono, Novartis, Schering-Plough, and Wyeth. Drs E. Dall’Olio and P. Gisondi have no conflicts of interest that are directly relevant to the contents of this study.
Author information
Authors and Affiliations
Corresponding author
Electronic supplementary material
Rights and permissions
About this article
Cite this article
Linder, D., Dall’Olio, E., Gisondi, P. et al. Perception of Disease and Doctor-Patient Relationship Experienced by Patients with Psoriasis. AM J Clin Dermatol 10, 325–330 (2009). https://doi.org/10.2165/11311190-000000000-00000
Published:
Issue Date:
DOI: https://doi.org/10.2165/11311190-000000000-00000