EVALUATION OF THERAPEUTIC PROGRAMS EDUCATING AD PATIENTS AND THEIR PARENTS

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2 EVALUATION OF THERAPEUTIC PROGRAMS EDUCATING AD PATIENTS AND THEIR PARENTS Rencontres 2èmes Internationales sur l Él Éducation Thérapeutique dans la Dermatite Atopique Rome, le 1er juillet 2011 Danielle Marcoux, m.d. Pediatric dermatologist Clinical associate professor Université de Montréal and CHU SainteJustine

3 Objectives With regards to health intervention in AD (therapeutic education for patients/parents ) 1. Identify the outcomes that are to be measured 2. Know the reasons why these outcomes need to be evaluated 3. Recognize the tools that can be used to measure outcomes

4 Before providing therapeutic education in AD With the patients/parents at 1st consultation /session 1. Set realistic goals to be reached knowledge about AD Improve competence Modify attitude 2. Initially assess their knowledge about AD their competence (ex. topical application) Periodically Reassess

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6 What outcomes are to be measured in AD therapeutic intervention? Primary outcomes 1. Improvement in the clinical severity of the child s AD 2. Improvement of subjective symptoms intensity of pruritus, quality of sleep 3. Improvement of the personal, familial and social functioning of the child and his family QoL Burden of AD (ex.treatment costs :direct, indirect, unperceived)

7 Outcomes to be measured Secondary outcomes Harmful scratching Treatment adhesion Medication usage Enhancement of caregiver ability, coping measures, control

8 Why outcomes of health intervention need to be evaluated? 1. To confirm the effectivness of a health intervention model used by one group 2. To compare the health intervention model practiced by one group to other groups Practicing the same type of health intervention Practicing another type of health intervention 3. To identify where improvements are required 4. To demonstrate the value of health interventions to health authorities so that access to financial support is obtained

9 Measure of AD severity Evaluation tools Objective 1. Clinical signs Extension Intensity 2. Non-invasive biomedical instrumentation Subjective 1. Symptoms Pruritus» 2 validated questionnaires -JUCKKI (children 8-12-y-o) -JUCKJU (children y-o) Sleep disorders 2. Qol, Burden of diseases

10 Evaluation tools for AD severity TOOLS year Comments Rajka and Langeland Nottingham Eczema Severity Score SCORAD(European Task Force for AD) (SCOring Atopic Dermatitis) SASSAD (Berth-Jones) SASSAD (Six Area, Six Signs Atopic Dermatitis) EASI (Hanifin) (Eczema Area Severity Index) POEM (Charman) (Patient-Oriented Eczema Measure) Evolution 2. Intensity 3. Extent 1992 Objective+ subjective Complex 1996 Objective 6 signs,6 sites No measure of extension 2001 Objective Excludes xerosis, pruritus? Mild, moderate, severe?? 2004 Subjective only

11 Evaluation tools for AD severity TOOLS IGA (Eichenfield, Gollnick) (Investigator Global Assesment) OSAAD (Sugarman) OSAAD (Objective Severity Assessment of Atopic Dermatitis) TIS (Oranje) TIS (Three Items Severity score) on one(or many) representative lesional site(s) year points scale From 0 (clear( clear) ) to 5 (very( severe) 2003 TEWL and skin hydration Difficult to use 2007 Redness (0-3) Oedema (0-3) Scratching (0-3) = ROS (Scale from 0-9)

12 TIS (Three Items Severity score) Use 3 itensity items of SCORAD Redness (0-3) Oedema (0-3) Scratching (0-3) = ROS (Scale of 0-9) 0 Each item can be evaluated at different but representative sites Significative correlation between TIS and SCORAD Can be completed in < 1 minute!! Recommanded for epidemiological studies and daily clinical practice

13 QoL questionnaires CDLQI QoL (Children s Dermatology Life Quality Index) Cartoon version year Comments Specific for children DFI (Dermatitis Family Impact) IDQOL (Infants Dermatitis Quality Of Life) PIQoL-AD (Parents arents Index of Quality of Life in Atopic Dermatitis) 1998 Measure family impact 2001 Specific for infants 2005 Measure family impact

14 QoL questionnaires Derm-specific but not AD specific 1. Children's DLQI (CDLQI) 2. Cartoon version of CDLQI Cartoon version of #1 has been validated AD specific 1. CADIS (Childhood AD Impact Scale) (has parental and child sections) 5 domains: child s sx, activity limitations and behavior, family and social function, parents sleep and emotions...validated and suggested for use in clinical research Caregivers fill out 1. PiQOL (Parents Index of Quality Of Life) in kids with AD 2. IDQOL (Infant Dermatitis QOL)

15 Instruments TEWL Evaluation tools Non-invasive Instrumentation Measure Water Vapour Flux Density Corneometer Capacitance Hydratation D-Squame Reflectance Spectroscopy High frequency US Roughness (xerosis) Erythema Sub epidermal oedema Comments Acclimatation of subject Arbitrary units (dry to hydrated) Profilometry study

16 TEWL measured on nonlesional normal-appearing appearing skin at 4 sites (the volar forearm,, dorsal arm, lower leg,, and cheek) There is no instrument that directly measures TEWL TEWL is infered from Water Vapour Flux Density

17 Intrinsically defective skin barrier function in children with atopic dermatitis correlates with disease activity J Allergy Clin Immunol 2008;121: TEWL in AD compared to control groups TEWL in AD correlates with AD disease severity

18 TEWL As A Biological Marker In Atopic Dermatitis In Children J Al Clin Immunol 2007;119, Supp 1: S280 J. Gupta, E. Grube, A. Lucky, A. Sheth, A. Assa ad, G. K. Khurana, Hershey; University of Cincinnati, Cincinnati, Children s Hospital Medical Center CONCLUSIONS: TEWL in normal appearing skin was significantly increased in children with AD compared to non-atopic control groups. Caucasian children with AD had consistently higher TEWL measurements than African-Americans. TEWL may be a useful biomarker for AD and should be evaluated in prospective studies.

19 Objectives With regards to health interventions in AD (therapeutic education for patients/parents ) 1. Outcomes that are to be measured 2. Reasons why these outcomes need to be evaluated 3. Tools that can be used to measure outcomes

20 Take home messages Setting objectives with parents/patients is essential Outcome measurements are important POSCORAD is a reliable, validated tool QOL, Burden of disease measures provide essential informations

21 RESSOURCES Am J Clin Dermatol 2009;10: SCORAD, POSCORAD: adserver.sante.univ-nantes.fr/scorad_course/scorad.html nantes.fr/scorad_course/scorad.html dermatite-atopique.orgatopique.org Questionnaires QoL The CDLQI is copyright world The CDLQI is copyright world-wide wide and can only be reproduced with permission from the authors. Professor Andrew Y Finlay Dr M S Lewis-Jones mail: finlayay@cf.ac.uk mail: sue.lewis-jones@nhs.net

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