JSACHD_Vol5_No3_Dec2016.book
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1 (2016 ) 1) 2) 2) 1) 3) 1) 1) 2) 3) (r TOF) 1 (FU) FU (Lost FU) TOF 3 Lost FU FU 66 Lost FU 30 (45%) 12 (40%) 10 Lost FU Lost FU (Lost FU 41 vs. FU 27 ) (30% vs. 0%) 3 (10%) Lost FU (45%) (21%) (14%) (82%) (43%) (21%) r TOF Lost FU Tetralogy of Fallot, Loss to Follow-up, Adult Congenital Heart Disease, Clinical Features ) (TOF) MRI 2 3 CT 1 1,2) (Lost FU: Lost Follow-up) 3-6) Lost FU TOF Lost FU TOF 3 (Lost FU: Lost Follow Up) (FU: Follow Up) 2 NYHA ( ) (CTR) QRS (PR) MRI (RVEDVI) (EF) PR 5 (0: 1: Trivial, 2: Mild, 3: Moderate, 4: severe) Lost FU 24
2 SPSS ver.19.0 Mann-Whitney U 2 Pearson 2 Fisher 5% Lost FU 30 (45%) 1 BT Lost FU FU FU NYHA I 17 II 10 III 3 IV 0 III 10% FU ( 2 ) III Lost FU QRS 180ms 1) Lost FU 2 (6.7%) FU 0 QRS CTR Lost FU PR (RVEF) FU MRI Lost FU 13 (43%) FU 23 (68%) Lost FU RVEDVI 181ml/m2 1) FU 131ml/m2 (Table 1) Lost FU 3 (10%) FU 8 (16.6%) Lost FU 60 4 CTR 50% QRS NYHA I 4 Lost FU (41%) (46%) Table 1. Characteristics FU (n=36) Lost FU (n=30) p value Age 27.2 ± ± 13.4 <.0001 Age (First visit) 36.6 ± 13.4 Age at repair 4.7 ± ± Male (%) 17 (47.2) 17 (56.6) 0.59 Mental disorder (%) 6 (16.7) 4 (13.3%) 0.71 Repaired in our hospital (%) 20 (55.5) 23 (76.7) 0.12 NYHA Class 0.06 I II 8 11 III 0 3 IV 0 0 CTR (%) 56 ± 7 57 ± QRS duartion (msec) 134 ± ± PR grade (Echo) 2.5 ± ± MRI** RVEDVI 131 ± ± RVEF 44 ± 9 38 ± CTR:Cardio-thracic ratio, NYHA:New York Heart Association, PR*pulmonary regurgitation, MRI: Magnetic resonance imaging, RVEDVI: Right ventricular End-diastolic volume index, RVEF: Right ventricular ejection fraction ** MRI: n=23(fu), n=13(lost FU) 25
3 FU Lost FU 9 (30%) Lost FU : FU (Table 2) Lost FU TOF X P CTR66% QRS 138ms NYHA II 3.4 ( 67mmHg) 2 31 TOF NYHA III X P CTR 74% QRS 216ms MRI RVEDVI 353ml/m 2 EF 24% Lost FU Figure 1 13 (43%) 6 (20%) 1 4 (13%) 5 6 (20%) Table (76%) 12 (40%) 6 (20%) (40%) 3 (10%) 1 (3%) Table 2. Outcome of Lost FU FU (n=36) Lost FU (n=30) P value Re-operation (%) 8 (16.6) 3(10) 0.16 Pulmonnary valve replacement (including RVOTR) 6 3 Other operations 2 0 Emergent hospitalization 0(0) 9(30) Seroius Events 0(0) 8(26.7) Acute heart failure (%) 0 4(13.3) 0.02 Stroke (%) 0 1(3.4) 0.27 Death (%) 0 3(10.0)
4 Others 21% Arrhythmia 21% Stroke 3% Endocarditis 3% Health screening 14% Pregnancy and delivery 21% Heart failure 17% Figure 1. The main reasons to visit a special cardiologist Table 3. Reasons for Loss of FU (multiple answer) n=28 No symptoms 23 Busyness 12 Told that they were completely cured 6 Explained to visit every >5 years 4 Mental disorders 3 Hesitated to visit pediatric clinic 1 Others 2 Lost FU 3-6) Mackie 6 Lost FU 18 61% 21% Lost FU 3) Lost FU 42% TOF 2) 2.2 5) Lost FU 7,8) TOF 1,2,9-11) 10) 27
5 1,2,9-11) 11,12) Fontan TOF Lost FU Lost FU 82% TOF Lost FU Great Ormond Street Hospital (London) Wray 8) TOF (24%) 3 48% Lost FU TOF Lost FU 45% Wray TOF Lost FU 6) 1980 TOF 13) TOF Lost FU Lost FU (30%) 3 (10%) FU Lost FU Lost FU FU 3.1 4) 5 Lost FU 5% NYHA III IV 14) Lost FU TOF Lost FU Lost FU FU FU Lost FU TOF ) Lost FU MRI MRI RVEDVI Lost FU 4 Lost FU Cure Lost FU TOF Lost FU 48% Mackie Lost FU 3) 2011 ACHD 16) 17) 28
6 Lost FU Lost FU 18) ) Lost FU TOF TOF Reference 1) (2011 ) 2) Warnes CA, Williams RG, Bashore TM, et al. ACC/AHA guideline for the management of adult congenital heart disease. J Am Coll Cardiol 2008;23:e ) Mackie AS, Lonescu-lttu R, Therrien J et al. Children and adults with congenital heart disease lost to followup: who and when? Circulation 2009;120: ) Yeung E, Kay J, Roosevert GE, et al. Lapse of care as a predictor for morbidity in adult with congenital heart disease. In J Cardiol 2008;125: ) Gurvitz M, Valente AM, Cook S, et al. Prevalence and predictor of gaps in care among adult congenital heart disease. J Am Coll Cardiol. 2013;61: ) Goossens E, Stephani I, Hilderson D, et al. Transfer of adolescents with congenital heart disease from pediatric cardiology to adult health care. J Am Coll Cardiol 2011; 57: ) de Bono J and Freeman L. Aortic coarctation repair-lost and found:the role of local long term specialist care. In J Cardiol 2005;104: ) Wray J, Frigiola A, Bull C et al. Loss to specialist followup in congenital heart disease; out of sight, out of mind. Heart 2013; 99: ) Therrien J, Siu S, McLaughlin PR et al. Pulmonary valve replacement in adults late after repair of tetralogy of Fallot. Are we operating too late? J Am Coll Cardiol 2000;36: ) Geva T, Sandweiss BM, Gauvreau K, et al. Factors associated with impaired clinical status in long term survivors of tetralogy of Fallot repair evaluated by magnetic resonance imaging. J Am Coll Cardiol 2004;43: ) Warnes CA. The adult with congenital heart disease: born to be bad? J Am Coll Cardiol 2005;46: ) Kwon EN, Mussatto K, Simpson PM, et al. Children and adlolescents with repaired tetralogy of Fallot report quality of life similar healthy peers. Congenit Heart Dis 2011;6: ) ACHD 2014;30: ) Waker A, Kaemmerer H, Hollweck R, et al. Outcome of operated and unoperated adults with congenital cardiac disease lost to follow-up for more than five years. Am J Cardiol 2004;95: ) Khairy P, Aboulhosn J, Gurvitz MZ, et al. Arrhythmia burden in adults with surgical repaired tetralogy of Fallot. A multi-institutinal study. Circulation 2010;122: ) 2011;21: ) ;143: ) Kovas AH, Verstappen A. The whole adult congenital heart disease patient. In J Cardiol 2011;53: ) ( ) 2014; 118:
7 Clinical features of adult tetralogy of Fallot lost to follow up - Experience of a regional hospital - Ryotaro Asano, M.D. 1), Yoshiki Mori, M.D. PhD. 2), Yasumi Nakashima, M.D. 2), Ryo Sugiura, M.D. PhD 1), Masaaki Koide, M.D, PhD 3), Toshiaki Oka, M.D. PhD 1) 1) Department of Cardiology, Seirei Hamamatsu General Hospital 2) Department of Pediatric Cardiology, Seirei Hamamatsu General Hospital 3) Department of Cardiovascular Surgery, Seirei Hamamatsu General Hospital Abstract Background: Adults with repaired tetralogy of Fallot (r-tof) were recommended to have at least annual follow-up (FU) with a cardiologist who has expertise in adult congenital heart disease (ACHD). Nevertheless, it has been reported that patients with ACHD are frequently lost to FU. However, little is known about the clinical features and outcomes in adults with r- TOF who had been lost to FU. Methods: We reviewed 66 adults with r-tof in our hospital between 2006 and The loss to FU was defined as not being received medical care from cardiology specialists for >3 years. Results: 45% (30/66) had been lost to FU and 40% (12/30) had been lost to FU for >10 years. The mean age of the loss group was older than that of the FU group (Loss to FU group: 40.6 years vs. FU group: 27.2 years). Compared with FU group, the loss to FU group more likely required emergency hospitalization and occurred the serious events including the sudden death. The most common reason for the loss to FU was no symptom (76%), and there were relative numbers of patients who were misinformed about need for FU (21%). Conclusions: Many adults with r-tof do not receive optimal long-term care. The patients who had been lost to FU are associated with adverse events. This is an urgent issue how to decrease the loss to FU. Key words Tetralogy of Fallot, Loss to Follow-up, Adult Congenital Heart Disease, Clinical Features 30
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