HEALTH RELATED QUALITY OF LIFE IN PEMPHIGUS
Author(s)
Rossana Ferri, Nurse, Science, Nurse, Stefano Tabolli Tabolli, MD, Director HSR unit, Andrea Paradisi, MD, Dermatologist, Cristina Di Pietro, D, STAT, Statistician, Damiano Abeni, MD, Epidemiologist, Biagio Didona, MD, Dermatologist - Head Department, Giuseppe Cianchini, MD, DermatologistIDI IRCCS, Rome, Italy
BACKGROUND: Pemphigus is a rare potentially life-threatening autoimmune disorder clinically characterized by flaccid blisters and painful erosions of the skin and mucous membranes. Very few studies investigated the health-related quality of life (HrQoL) in patients affected by pemphigus, reporting a strong impact on physical and emotional status. OBJECTIVES: To assess HrQoL in patients affected by pemphigus and to develop an appropriate and effective reporting tool for health personnel. METHODS: Patients completed the Skindex-29, GHQ-12, and SF-36 questionnaires. Scores were returned to the clinical staff in a specific standardized format. IKEDA and PGA scores were assessed by a dermatologist to evaluate the severity of the disease. After multiple assessments over time we provided graphics with trends for each patient to be included in the clinical record. RESULTS: For 121 participants (40% males, 56% age>50 years), feed-back forms were provided within 3 hours from data collection. The health status (SF-36) and QoL related to dermatological disease (Skindex- 29) were significantly worse in each dominion for females (SF-36: Physical Dominion: p ≤ 0.001 ¨C Mental Dominion: p ≤ 0.025; Skindex-29: Symptoms: p ≤ 0.01 ¨C Emotions: p ≤ 0.02). 33% of males and 44% of females are at risk of depression and anxiety. Each patient with at least 4 readmissions received a personal plotted figure showing time-trends. The clinical severity scores showed a high, and statistically significant, agreement (k: 0.62), but not with the subjective patient's evaluation. CONCLUSIONS: The routine assessment of HrQoL in patients affected by pemphigus is feasible and can be a very useful outcome measure for clinical studies. The management must also take into account the strong impact the disease has on different aspects of patient's life. Moreover talking about HrQoL-related time-trends after multiple longitudinal assessments seems to be more informative and useful both for patients and health personnel.
Conference/Value in Health Info
2008-09, ISPOR Asia Pacific 2008, Seoul, South Korea
Value in Health, Vol. 11, No. 6 (November 2008)
Code
PSY4
Topic
Patient-Centered Research
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes
Disease
Sensory System Disorders, Systemic Disorders/Conditions