Why? Children are confident with the pediatric team, why should - PowerPoint PPT Presentation

4/21/2018 Why? • Children are confident with the pediatric team, why should they change? Pediatric Pulmonary • Most pediatric cardiologist in France are also cardiologist Hypertension and could follow them as grown ups • Risk of deterioration : less confidence at a difficult age- break in FU or treatment (only 48% of adolescents with CHD The transition in Paris (France) underwent successful transition) Marilyne Levy • BUT in case of deterioration they will need an adult unit Campbell F et al. Cochrane Database Syst Rev. 2016 Sable et al. Circulation. 2011;123:1454-1485.) At what age? Pediatric « cocooning » Child + parents + doctor WHO : 10 - 19 yrs old Adolescence is characterised by dynamic brain development in which the interaction with the social environment shapes the capabilities an individual takes forward into adult life Lancet commission 2016 : • At diagnosis : difficult moments spent together 10-24 yrs old • Initiation of the treatment, regular visits Early adolescence refers to 10–14 years, late adolescence to 15–19 years, and young adulthood to 20–24 years. • Minimal invasive explorations (Cath at diagnosis and in AHA recommandations case of deterioration) Sable et al. Circulation. 2011;123:1454-1485 The American College of Cardiology task force and the recent “ACC/AHA Guidelines on the Management of Adults With Congenital Heart Disease” recommended that the transition process start at 12 years of age to prepare the patient for transfer to adult care. 1

4/21/2018 To adult doctors Catheterization in children • Yesterday a child with parents • Today « almost » an adult but still with parents…. The Cardiac catheterization is recommended before initiation Repeat cardiac catheterization is recommended « adult » doctors are not used of PAH-targeted therapy (Class I; Level of within 3 to 12 months after initiation of therapy Evidence B). Exceptions may include critically ill to evaluate response or with clinical worsening to.. patients requiring immediate initiation of empirical ( Class I; Level of Evidence B ). therapy ( Class I; Level of Evidence B ). Serial cardiac catheterizations with AVT are recommended • Patient already treated but by as follows: a. Serial cardiac catheterizations should be done Cardiac catheterization should include acute vasoreactivity another team during follow-up to assess prognosis and potential testing (AVT) unless there is a specific changes in therapy (Class I; Level of Evidence contraindication ( Class I; Level of Evidence A ). B) • New evaluation with cath in b. Intervals for repeat catheterizations should be based on clinical judgment but include worsening order to adapt the treatment clinical course or failure to improve during treatment (Class I; Level of Evidence B). Abman S et al. Circulation. 2015;132:2037-2099. From initial experience up to The initial experience now • Among 79 « adolescent » patients • 31 refused the transition program • First patients did not want to • 7 were referred for return to the adult department transplantation • 34 in discussion…. • 7 died (one should have been transferred before but transition program was delayed) 2

4/21/2018 From initial experience up to From initial experience up to now now • Patients refused to return to adult clinics • Many patients refused to return to adult clinics • Common staff to present the case to the adult doctors • Common staff in the pediatric department to present the • First consultation in the adult case to the adult doctors PH department with the pediatric team The new team Soizig: adult team at 17 • 2010-2015 : stable with sildenafil FC 1-2 - Cath at diagnosis (mPAP 65) and in 2012 (mPAP 46mmHg) • First consultation around 16- • Transition feb 2015 aged 17 : Stable FC till 2016 with sildenafil but increased PAP at 18 >> adult echo • Different approach • Cath (Jul 2016) : mPAP 86 - CI 4 - PVR 14; NT-Pro BNP 730 : Bitherapy • Hemodynamic evaluation • Cath (Fev 2017) : mPAP 79 - CI 4.1 - PVR 12.3 - NT-ProBNP 700 : + Selexipag - FC 2 more often (serial • Cath (Oct 2017) : mPAP 76 - CI 3.3 - PVR 14.3 - NT-ProBNP 715 : switch to SC Trepro catheterizations intervals 4- 12months) • Cath (Feb 2018) : mPAP 85 - CI 4.4 - PVR 12.2 - NTProBNP 1000: switch to IV Prosta - still in FC 2 but dropped out of university because of treatment • Cath (Mai 2018) : STABLE FC but hemodynamic data unchanged : EVERY 4 MONTHS 3

4/21/2018 Soreya adult team at 18 Catheterization in adults • Diagnosis at 13 syncope, chest pain • Cath 1 (2009) : 59/39-m49 and 28 after NO • CCB Flush ++++ switch to sildenafil - FC 1 and stopped the treatment at 18, Galiè et al. Eur Respir J 2015; 46: 903–975 syncope • Transition at 18 (jan 2015) : Cath2 PAP 81/41- m59 - IC 3.4 - PVR 8.4 AFTER NO : PAP 57/26- m38 - IC 3.7 - PVR 6 • CCB low doses (flush, nausea, headache) : FC 1 - low PAP at echo • KT 3 (jan 2016) : PAP 51/25-m36 - IC 3.9 -PVR 3.7 • Dec 2017 : FC 1 - NTProBNP normal, good echo parameters • STABLE clinicat and hemodynamically : EVERY YEAR What do the parents feel? What do the patients feel? • More technical • More technical, less listening • Too many KT • « I have the feeling that the new team doesn’t know what • More agressive treatments has been done previously » • Less dialogue • Different doctors during hospitalization • « I miss the cocooning » of your team • Explanations but only catheterization is taken into account • We were known from everyone, now we are anonymous, we feel a « number » 4

4/21/2018 Paris aftermath today Why? • Children are confident with the pediatric team, why should • 20 treated children were referred to the adult department they change? • 7 transferred for transplantation • Most pediatric cardiologist in France are also cardiologist • 2 refused to return and could follow them as grown ups • Risk of deterioration : less confidence at a difficult age- • 11 succeeded break in FU or treatment (only 48% of adolescents with CHD • 6 complain but know they have no other option underwent successful transition) • Patients who were transferred when deteriorating complained the • BUT in case of deterioration they will need an adult most unit • All but one think the approach was very different Campbell F et al. Cochrane Database Syst Rev. 2016 Sable et al. Circulation. 2011;123:1454-1485.) Conclusion Thanks • Preparing the patient and the family early enough • Transition in a stable clinical situation • Idealy the patient should meet the « adult » doctor in the pediatric department • First visit in the adult department with the pediatric team • Periode of transition alternation between adult and pediatric consultation (1year?) 5

4/21/2018 6