Quality of life in children with psoriasis

Transcription

1 Quality of life in children with psoriasis Marieke Seyger Psychodermatologie: het kind centraal Vrijdag 23 januari 2015 AMC Amsterdam

2 Disclosure Has received research grants from / was involved in clinical trials from Abbvie, Almirall, Astellas, Leo Pharma and Pfizer Served as a consultant for Abbvie, Almirall, Astellas, Boehringer Ingelheim, Celgene and Pfizer

3 Kinder Psoriasis - Adulte Psoriasis Bei Kindern: >> positive Familienanamnese >> HLA-Cw6 positiv >> Genitalregion, Kopfhaut und Gesicht >> Oberflächlichkeit der Plaques Mehr Juckreiz! Viel Off-label-Anwendung Mehr Einschränkung der Lebensqualität??

4 Contents CDLQI An intrapatient comparison of QoL in psoriasis in childhood and adulthood Influence of treatments on Qol in pediatric psoriasis SPECTRUM program

5 CDLQI = Children s Dermatology Life Quality Index Score: 0-30

6 Quality of life in childhood psoriasis Children s Dermatology Life Quality Index (CDLQI;0-30) Lewis Jones et al: 1 Psoriasis (n= 25) CDLQI = 5.4 SD 5.0 Beattie et al: 2 Psoriasis (n=29) CDLQI = 9.17 SD 7.83 Eczema (n=106) CDLQI = 9.14 SD 6.69 Urticaria (n=17) CDLQI = 6.12 SD 6.39 Acne (n= 50) CDLQI = 5.4 SD 4.69 Nijmegen Registry (n=290) CDLQI = 7.5 SD Lewis-Jones et al. Br.J. Dermatol 1995;132: Beattie et al. Br.J.Dermatol 2006; 155: pp

7 An intrapatient comparison of quality of life in psoriasis in childhood and adulthood. A Questionnaire among 1762 adult patients M.E.A. de Jager, E.M.G.J. de Jong, P.C.M. van de Kerkhof, A.W.M. Evers, M.M.B. Seyger. J Eur Acad Dermatol Venereol. 2011;25(7):

8 568 adult patients (32.2%) had childhood onset psoriasis Retrospectively adults assess childhood QoL much more impaired than adulthood QoL ( DLQI: 12.8 vs 6.8) In % of patients childhood psoriasis had a high degree of limitations on recreational and social activities The social development-domain, which is one of the developmental milestones in a child, is particularly impaired The QoL on the long term is not determined by the age of onset of psoriasis. (DLQI COP 6.8 vs DLQI AOP 6.9)

9 Evaluate the age at diagnosis on the liftime outcomes of psoriasis patients Those diagnosed at younger age: (n = 26) More likely to have a greater lifetime DLQI Have felt depressed Believe that psoriasis had caused their depression Experience life time sleep problems Use recreational drugs Hide their psoriasis over their lifetime Experience more lifetime discrimination in social settings Pediatric dermatology 2014

10 Quality of life in childhood psoriasis

11 Aim To investigate the influence of treatments in daily clinical practice on the Children s Dermatology Life Quality Index (CDLQI) in pediatric psoriasis To assess what items of the CDLQI were mainly influenced by psoriasis treatments.

12 Child-CAPTURE Nijmegen Registry (since 2008) Continuous Assessment Psoriasis Treatment Use Registry Prospective observational registry: 290 children (<18) included Efficacy and safety of treatments Clinical parameters Quality of life Genetic research

13 Child-CAPTURE - Referrals

14 Results Cohort characteristics Number of patients 125 Mean age (range) 10.7 years (3-17) Female gender 63.2% Psoriasis history Mean duration (range) 39.2 months (1-154) Family history 70.4% Baseline assessments Mean CDLQI (range) 7.5 (0-25) Mean PASI (range) 7.0 (0-33.3)

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16 Results Cross-sectional

17 Results - Cross-sectional Age differences * * * *

18 Results - Longitudinal * * * *

19 Results - Longitudinal

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21 Supportive Program for Education, Coping en Training of parents and children with psoriasis Aim: show children and adolescents different ways how to cope with psoriasis in daily life Dermatology Nurse Medical Psychologist Dermatologist SPECTRUM

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23 SPECTRUM Two age-related groups: 6-12 years; years Three sessions (± 3 hours) One follow-up session Small group size (5-6 patients)

24 SPECTRUM - CONTENT 1. Medical information Daily skin care 2. Recognition and avoidance of trigger factors for itch and scratching Dealing with itching and scratching 3. Coping with psoriasis, including confidence and self-esteem Sleep hygiene and relaxation exercises 4. Long-term goals and relapse prevention

25 SPECTRUM - EVALUATION 1. Medical information Daily skin care 2. Recognition and avoidance of trigger factors for itch and scratching Dealing with itching and scratching 3. Coping with psoriasis, including confidence and self-esteem Sleep hygiene and relaxation exercises 4. Long-term goals and relapse prevention Overall score 23 Children: 8 22 Parents: 9

26 Conclusions Pediatric psoriasis has a negative impact on QoL Retrospectively adults assess childhood QoL much more impaired than adulthood QoL ( DLQI: 12.8 vs 6.8) In % of patients childhood psoriasis had a high degree of limitations on recreational and social activities The social development-domain, which is one of the developmental milestones in a child, is particularly impaired Itch and treatment have the highest impact on QoL Treatment especially improves itch and sleep disturbance SPECTRUM program could be a promising addition to regular treatment

27 The Pediatric Psoriasis Team Dermatology Maartje van Geel Inge Bronckers Annet Oostveen Michelle de Jager Elke de Jong Peter van de Kerkhof Wilma Klompmaker Maria Teunissen Judith Bergboer Joost Schalkwijk Patrick Zeeuwen Medical Psychology Andrea Evers Saskia Spillekom-van Koulil Pediatric Rheumatology Esther Hoppenreijs Radboud University Nijmegen Medical Centre, The Netherlands