I have no relevant financial relationships to disclose.

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1 Lecture Psychosocial outcomes in ConHD A European Perspective E.M.W.J. Utens, Ph.D./Associate Prof. I have no relevant financial relationships to disclose. dept. of Child and Adolescent Psychiatry/Psychology Erasmus MC- Sophia Children s Hospital Rotterdam, the Netherlands 4th Annual Cardiac Neurodevelopmental Symposium in Milwaukee, Wisconsin, USA June 4 th, 2015, 12: AM 1: PM. Lecture 1 st part Rotterdam cohort studies into long-term outcomes Children/adolescents: behavioral/ emotional intellectual function quality of life Adults: psychosocial outcomes sexual functioning impact ICDs Parental adjustment Psychosocial needs of parents and children 1

2 Lecture 2nd part Rotterdam sport intervention: RCT Lecture 2nd part Grants from: What are the long-term outcoumes, both psychosocial and cardiological, in children, adolescents and young adults with ConHD, > years after 1 st surgery? 2

3 Included: all consecutive patients first invasive treatment at ErasmusMC < 15 years of age at surgery follow-up > years after 1 st surgery Final sample: 498 patients (resp. rate : 87%) < 1980 Psychopatholog y 2 0 Psychosocial (work, relations) Sexuality ICD < 1980 Psychopathology 27% 2 0 Norm % CBCL, Achenbach 3

4 CBCL parent report mean problemscores withdrawn somatic anxious / social problems thought attention delinquent agressive internalizing externalizing ConHD (N=144) Reference group (N = 918) ( 15 yrs) Utens et al. Psychol Med YSR self report mean problemscores ConHD (N=179) Reference group (N = 763) (11 17 years) Utens et al. Psychol Med 1993 E.M.W.J.Utens YASR, Achenbach No differences between type of cardiac defect ( 5 groups: ASD, VSD, ToF, TGA, PS ) 2 0 Direct comparison within ConHD sample: more problems reported by youngsters > parents. Rijen, Utens et al. Eur Heart J Utens et al. E.M.W.J.Utens Psychol Med E.M.W.J.Utens

5 Young females ConHD: more psychopathologcial problems ( Van Rijen et al., Eur Heart J 2005) 2 0 Rijen, Utens et al. Eur Heart J male 20-27female female Patients Ref. group Older pts less problems < younger patients % special education (norm= 5%) Normalization: settled, caught up delay in autonomy Response shift or posttraumatic growth. Opic et al., in press QoL (SF 36) > norm Opic et al., 2015 % pathology compared to norm 5

6 Opic et al., 2015 Clin Res Cardiol Methods: Female Sexual Function Index: desire, arousal, lubrication orgasm, satisfaction, pain Female Sexual Distress Scale Revised (Meston CM 2003, Derogatis et al, 2008, ter Kuile et al, 2009) Int. Index Erectile Function: orgasmic function, sexual desire, intercourse and overall satisfaction, erectile function (Rosen et al., 1997) ConHD Specific Problems Sexual Functioning (Utens et al, 2012) Sample: N=254, median age 40,5 yrs, 53% male (ASD: n=72; VSD: n=71; PS: n=; TOF: n=53; TGA: n=28) 6

7 Majority had disease specific worries: contraceptives, heredity, pregnancy and delivery. Patients indicated: suboptimally informed about sexuality in early adolescence. Females and males no relation between: diagnostic groups sexual functioning systemic ventricular function sexual disorders socioeconomic status sexual disorders Opic et al., Clin Res Cardiol Included: 26 ToF patients + ICD (44 years), 2 control groups: 28 ToF patients ICD (40 years) 35 ICD patients ToF (age 72 years), older general ICD population with acquired heart disease Psychosocial functioning : daily functioning subjective health status quality of life anxiety / depression coping 7

8 Compared to ToF ICD: TOF + ICD psychosocial func oning physical functioning (SF 36) general health perception (SF36) sa sfac on with life ( SWLS) Compared to older ICD patients ( acquired heart disease) TOF + ICD better physical functioning, BUT: sa sfac on with life more anxiety coping styles More inappropriate schocks Conclusion: Major impact on psychosocial functioning Attention when considering ICD for young patients Attuned psychological counselling Cohort 2 > 1990 ( ) cohort 2 > 1990 Quality of Life: Motor Cogni ve Emotional Psychopathology Spijkerboer et al., Qual Life Res J Pediatr Surg

9 cohort 2 > 1990 cohort 2 > 1990 Why poor outcomes as to Quality of Life Psychopathology? N=117 (7 16 years. Diagnoses: ASD, VSD, TGA, PS), WISC test Overall IQ scores in normal range; Verbal IQ, Verbal Comprehension Perceptual Organiza on (7 11 yrs) Teacher Report From (Achenbach 2001): School related behavioral/emotional functioning was favorable Adults: second cohort 20 year follow up (Opic, Utens et al. Cardiol Young, 2014) Adults: second cohort 20 year follow up Operated Heart surg. yr f-up 20 yr f-up yr f-up TOF + TGA: n= 8 Severe ConHD: TOF and TGA Heart surg. 20 yr-f-up TGA + TOF TOF + TGA+ n=61 (Opic, Utens et al. Cardiol Young, 2014) 9

10 Adults operated 80 90: biograph. results vs norm Adults operated 80 90: severe ConHD TGA: 31 (18 ASO, 13 Mustard), total sample: N=79, yrs, ToF: 48 resp. rate: 69% Compared to norm N=79 : favorable QOL Compared to norm: special education: 24 % (vs 4%) learning difficult: 39% SF 36: vitality, general health % employed = norm, but occupa onal status income, sickleave (7% vs 4%) QOL : no difference diagnosis (recent TOF = recent TGA) Historical comparison of both 20 yr f up studies 1) Historical: 8 TOF + TGA 2) Recent: 79 TOF + TGA Both age range QOL: Nodifferences recent vs. historical recent Mustard better vitality > historic Mustard pts Biographical: No improvements, except : better educational level in recent sample! Historical and recent: comparable % special education! Conclusion Compared to norm: Recent 20 yr f up sample favorable QOL, despite biograp. impairments % special education/ learning problems high Historical comparison of both 20 yr f up studies: Hardly any improvement psychosocial outcome (TOF+ TGA)

11 Summary cohort studies Parental Adjustment cohort 2 > 1990 Lower levels pychol. distress (GHQ) somatic symptoms sleeplessness /anxiety serious depression Styles of coping similar/more favorable > norm Less reassurring thoughts Less negative emotions Spijkerboer et al, Cardiol Young 2007 Utens et al, Cardiol Young 2002 Present Present 11

12 Future Future 2015 Future Future Psychosocial care should be integrated much more in the medical treatment of children with ConHD. Psychosocial care Holistic approach! 12

13 Future References: > years: Opic, et al. Clin Res Cardiol (ICDs) Int J Cardiol (sexuality) Cardiol Young (historical comparison) Clin Res Cardiol (psychosoc. functioning) Cardiol Young, in press. (psychopathology) Int J Cardiol (sports) >20 years: Van Rijen, Utens et al. > years: Utens et al. To sport or not to sport? A multicentre RCT into an exercise program and health related quality of life in youngsters with complex congenital heart disease Karolijn Dulfer 1, Nienke Duppen 2, Willem Helbing 2, Elisabeth Utens 1 1.Department of Child and Adolescent Psychiatry/Psychology 2.Department of Paediatrics, Division of Cardiology recent cohort 2: Spijkerboer Utens et al Background Background Tetralogy of Fallot Fontan procedure Life threatening defects Complex defects lower exercise capacity Jenkins et al Moller et al Impact on health related quality of life Dulfer et al. Eur J Prev Cardiol Adolescence: less physically active increased risk cardiovascular disease adulthood Massin, Hovels-Gurich, Seghaye,

14 An exercise program? Methods multicenter RCT Exercise program 91 participants 25 years 70% boys 44 Fontan 47 Fallot Baseline e assessment 54 exercise group 37 control group (no exercise program) Fol llow up Standardized exercise program Training with physiotherapist 12 weeks, 3 x per week, 1 hour 60 70% Heart Rate Reserve Group format Medical and psychological assessment: Online questionnaire and interview by phone Nearby their home 14

15 Effects on health related quality of life Effects on health related quality of life Children 15 cognitive functioning Children 15 with low baseline score Parents social functioning Young people 16 25: no effects Dulfer et al. J Adolescent Health (2014) Effects on emotional en behavioral problems Effects on leisure time spending and enjoyment No effect on general anxiety and depressive symptoms Anxiety regarding exercise Passive leisure time spending However active leisure time spending Remarkably: at follow up,controlgroup anxiety and depressive symptoms Extensive examination = feeling of safety? No effects on sportsenjoyment Dulfer et al. Int J Cardiol 2014 Dulfer et al. Congenital Heart Disease, (2013) 15

16 Influence of parental mental health Influence of parental mental health Parental variables well being children Adolescents in exercise group with Parental anxiety and overprotection anxious/depressive parents: social functioning after exercise program Dulfer et al. Pediatric Cardiology 2014 Dulfer et al. Pediatric Cardiology 2014 Clinical implications Conclusions Positive effects exercise program on health General guidelines: daily 60 minutes physically active Adolescents with low HRQoL encourage exercise! related quality of life and passive leisure times spending During consults: semi structured questions regarding (anxiety towards) exercise Future research exercise program: More FUN! Fit to Individual needs Psychosocial component? Psycho education/family sports? 16

17 To sport or not? Yes we can! Research team Erasmus MC cohort studies Amsterdam (AMC) Dr I Kuipers Dr EMWJ Utens Prof Dr J Roos-Hesselink Prof Dr W Helbing Plus for sport RCT: Dr Karolijn Dulfer Drs N Duppen Drs S Bossers Leiden (LUMC) Prof Dr N Blom Nijmegen (Radboud) Prof Dr M Hopman Dr M Schokking Dr A van Dijk Dr L Kapusta e.utens@erasmusmc.nl Utrecht (WKZ) Dr A Blank Dr T Takken References concerning RCT into effectiveness of exercise training. Dulfer K et al., in: Pediatr Cardiol Parental mental health moderates QoL J Adolesc Health Quality of life Int J Cardiol Behavioral and emotional problems Congenit Heart Dis Health behavior and disease knowledge as moderators Eur J Prev Cardiol Review as to exercise and psychosocial functioning For information : aepc.2016@erasmusmc.nl 17

18 Thankyou for your attention! 18