Health-related quality of life and physical activity in children with inherited cardiac arrhythmia or inherited cardiomyopathy: the prospective multicentre controlled QUALIMYORYTHM study rationale, design and methods

Amedro, Pascal; Werner, Oscar; Abassi, Hamouda; Boisson, A; Souilla, Luc; Guillaumont, Sophie; Calderon, Johanna; Requirand, Anne; Vincenti, Marie; Pommier, Victor; Matecki, Stéfan; Villeon, Grégoire De La; Lavastre, Kathleen; Lacampagne, Alain; Picot, Marie‐Christine; Beyler, Constance; Delclaux, Christophe; Dulac, Yves; Guitarte, A.; Charron, Philippe; Denjoy-Urbain, Isabelle; Probst, Vincent; Baruteau, Alban‐Elouen; Chevalier, Philippe; Filippo, Sylvie Di; Thambo, Jean-Benoît; Bonnet, Damien; Pasquié, Jean‐Luc

doi:10.1186/s12955-021-01825-6

Cited by 9 publications

(6 citation statements)

References 59 publications

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“…Psychometric properties showed reliability, validity, and responsiveness to clinical change over time, including the French version of the PedsQL. 45 , 46 In previous studies using various HRQoL instruments, 37 , 43 , 47 , 48 our group also found a good sensitivity of the PedsQL generic questionnaire in the CHD population. 46 , 49–53 We had initially considered several questionnaires for the QUALIREHAB trial, as other HRQoL instruments with good psychometric properties have been used in the paediatric and adult CHD populations.…”

Section: Methodssupporting

confidence: 69%

Early hybrid cardiac rehabilitation in congenital heart disease: the QUALIREHAB trial

Amedro,

Gavotto,

Huguet

et al. 2024

European Heart Journal

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Background and Aims Cardiopulmonary fitness in congenital heart disease (CHD) decreases faster than in the general population resulting in impaired health-related quality of life (HRQoL). As the standard of care seems insufficient to encourage and maintain fitness, an early hybrid cardiac rehabilitation programme could improve HRQoL in CHD. Methods The QUALIREHAB multicentre, randomized, controlled trial evaluated and implemented a 12-week centre- and home-based hybrid cardiac rehabilitation programme, including multidisciplinary care and physical activity sessions. Adolescent and young adult CHD patients with impaired cardiopulmonary fitness were randomly assigned to either the intervention (i.e. cardiac rehabilitation) or the standard of care. The primary outcome was the change in HRQoL from baseline to 12-month follow-up in an intention-to-treat analysis. The secondary outcomes were the change in cardiovascular parameters, cardiopulmonary fitness, and mental health. Results The expected number of 142 patients was enroled in the study (mean age 17.4 ± 3.4 years, 52% female). Patients assigned to the intervention had a significant positive change in HRQoL total score [mean difference 3.8; 95% confidence interval (CI) 0.2; 7.3; P = .038; effect size 0.34], body mass index [mean difference −0.7 kg/m2 (95% CI −1.3; −0.1); P = .022; effect size 0.41], level of physical activity [mean difference 2.5 (95% CI 0.1; 5); P = .044; effect size 0.39], and disease knowledge [mean difference 2.7 (95% CI 0.8; 4.6); P = .007; effect size 0.51]. The per-protocol analysis confirmed these results with a higher magnitude of differences. Acceptability, safety, and short-time effect of the intervention were good to excellent. Conclusions This early hybrid cardiac rehabilitation programme improved HRQoL, body mass index, physical activity, and disease knowledge, in youth with CHD, opening up the possibility for the QUALIREHAB programme to be rolled out to the adult population of CHD and non-congenital cardiac disease.

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Section: Methodssupporting

confidence: 69%

Early hybrid cardiac rehabilitation in congenital heart disease: the QUALIREHAB trial

Amedro,

Gavotto,

Huguet

et al. 2024

European Heart Journal

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“…These QoL levels may reflect the medical advances in screening and care for CHD in recent decades [ 40 , 41 ]. Indeed, to date, over 90% of children with a CHD are expected to survive more than 30 years after the first cardiac surgery [ 3 , 10 , 40 – 42 ]. In addition to this, our patients and their parents are involved in a multidisciplinary standardized follow-up care.…”

Section: Discussionmentioning

confidence: 99%

“…In Italy, the prevalence of CHD is around 7 per 1000 births [ 2 ]. In the past two decades great medical and surgical advances have significantly increased life expectancy [ 3 , 4 ] and the probability of survival beyond the first year of life has increased to 90% among individuals born with CHD [ 5 , 6 ]. Thus, most children and adolescents with CHD are expected to reach adulthood [ 7 , 8 ].…”

Section: Introductionmentioning

confidence: 99%

Health-related quality of life in Italian children and adolescents with congenital heart diseases

Amodeo

Ragni

Calcagni

et al. 2022

BMC Cardiovasc Disord

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Background Congenital heart disease (CHD) is the most common congenital anomaly at birth, affecting approximately 1% of live births. In recent decades great medical and surgical advances have significantly increased life expectancy, shifting healthcare professionals' and researchers’ interests in patients' Quality of Life (QoL). The main aims of our study were to evaluate generic and condition-specific QoL in a group of Italian children and adolescents with CHD and their parents and examine the level of agreement and directional disagreement between child/adolescent and parents reports on generic and condition-specific QoL. Methods A cross-sectional study was designed with CHD children and adolescents and their parents referred to the Cardiology Department of “Bambino Gesù” Children’s Hospital. The PedsQL scale was used, including generic (PedsQL 4.0) and cardiac-specific modules (PedsQL 3.0) were administered to patients and caregivers. A Kruskal–Wallis test was used to compare generic and cardiac module scores between patients with different ages, CHD diagnoses, and between patients who underwent surgery interventions and/or are currently taking cardiac medications. Results 498 families were enrolled in this study. On average, patients reported a good level of generic and condition-specific QoL, as well as their mothers and fathers. Children aged between 5–7 years old reported lower generic and cardiac-specific total QoL levels than children aged 8–12 years and adolescents (13–18 years). With regard to the agreement, patient-parent agreement on condition-specific QoL ranged from 25 to 75% while on generic QoL, it ranged from 19 to 76%. The highest percentage of disagreement between parents and children was found in patients aged 5–7 years old, both for condition-specific and generic QoL rates. Conclusions Our study contributed to the growing body of knowledge on QoL in CHD, emphasizing the need for these families to receive support from multidisciplinary standardized care, including psychological consultations and support.

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“…A pesar de que no existen estudios prospectivos de alta calidad que orienten la decisión sobre la participación en deportes en este tipo de pacientes (17), las recomendaciones actuales demuestran que, si en estos pacientes se realiza una correcta evaluación inicial, una estratificación de riesgo adecuada y un tratamiento ajustado a la condición, se puede lograr un retorno deportivo seguro de pacientes con SQTL1 (18). En este sentido, la toma de decisiones compartida entre el paciente, su familia, y el médico tratante, junto con ciertas recomendaciones generales, como son la evaluación clínica exhaustiva con un especialista en arritmias, evitar la participación en deportes competitivos en pacientes sintomáticos hasta notificar a los familiares, definir un plan de manejo y permanecer asintomáticos durante al menos 3 meses después del inicio de la terapia, tomar medidas de prevención como evitar el uso de medicamentos que prolonguen el QT, mantener una correcta hidratación y reposición de electrolitos, gestionar la hipertermia y contar con un desfibrilador externo automático personal, además de considerar un plan de acción frente a emergencias, podrían ser factores cruciales al tomar una decisión con respecto al retorno al deporte con un bajo riesgo de complicaciones (17)(18)(19).…”

Section: Reportes De Casounclassified

Síndrome de QT largo en una futbolista juvenil chilena: Reporte de caso

Herreros Irarrázabal,

Hayes,

Morales

2024

Revista Archivos SOCHMEDEP

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Introducción: El síndrome de QT largo (SQTL) es un trastorno cardíaco caracterizado por la prolongación del intervalo QT en el electrocardiograma (ECG). Este alargamiento del QT se ha asociado con un mayor riesgo de desarrollar arritmias potencialmente mortales. Objetivo: El objetivo principal de este reporte es resaltar la importancia del diagnóstico temprano y las variables a considerar para decidir la participación deportiva, así como presentar el manejo de estos casos. Metodología: Reporte del caso de una mujer de 17 años con diagnóstico de SQTL1 mediante electrocardiograma de reposo (ECG), con una prueba genética confirmatoria. La estratificación de riesgo mediante el score de Schwartz la clasificó como una paciente de bajo riesgo. Discusión y conclusión: Los resultados del caso presentado muestran que, a pesar del estado asintomático de la paciente y el tratamiento con beta bloqueadores, existen preocupaciones acerca de su participación en deportes de alto rendimiento. La discusión se enfoca en la complejidad de la toma de decisiones en pacientes con SQTL1, especialmente en el contexto del alto rendimiento deportivo, en este sentido es fundamental considerar la evaluación individualizada, incluyendo el estudio de factores genéticos, la evaluación de la adherencia y la respuesta al tratamiento médico, y la implementación de protocolos de emergencia y obtención de dispositivos de reanimación que nos permitan actuar en caso de ser necesario. En base a lo anterior, es fundamental una toma de decisiones compartida entre el paciente, su familia y el médico, así como la aplicación de recomendaciones generales, como la evaluación clínica exhaustiva y continua de los deportistas.

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Health-related quality of life and physical activity in children with inherited cardiac arrhythmia or inherited cardiomyopathy: the prospective multicentre controlled QUALIMYORYTHM study rationale, design and methods

Cited by 9 publications

References 59 publications

Early hybrid cardiac rehabilitation in congenital heart disease: the QUALIREHAB trial

Early hybrid cardiac rehabilitation in congenital heart disease: the QUALIREHAB trial

Health-related quality of life in Italian children and adolescents with congenital heart diseases

Síndrome de QT largo en una futbolista juvenil chilena: Reporte de caso

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