Experiences of caregivers of children with inherited metabolic diseases: a qualitative study

Children with medical complexity in Canada

(2017) Tammie Dewan et al.   Paediatrics & Child Health

Attenuated mucopolysaccharidosis II; Parental beliefs about the impact of disease on the quality of life of their children

(2016) Archana Soni-Jaiswal et al.   MOLECULAR GENETICS AND METABOLISM

Mucopolysaccharidosis I; Parental beliefs about the impact of disease on the quality of life of their children

(2016) A. Soni-Jaiswal et al.   Orphanet Journal of Rare Diseases

Scoping review of patient- and family-oriented outcomes and measures for chronic pediatric disease

(2015) Sara D Khangura et al.   BMC Pediatrics

Child and family experiences with inborn errors of metabolism: a qualitative interview study with representatives of patient groups

(2015) Sara D. Khangura et al.   JOURNAL OF INHERITED METABOLIC DISEASE

Patient- and Family-Centered Care Coordination: A Framework for Integrating Care for Children and Youth Across Multiple Systems

(2014)   PEDIATRICS

Changes in self-reported and parent-reported health-related quality of life in overweight children and adolescents participating in an outpatient training: findings from a 12-month follow-up study

(2013) Emily Finne et al.   Health and Quality of Life Outcomes

Assessment of quality of life of the children and parents affected by inborn errors of metabolism with restricted diet: preliminary results of a cross-sectional study

(2013) Alexandre Fabre et al.   Health and Quality of Life Outcomes

Living with an inborn error of metabolism detected by newborn screening—Parents’ perspectives on child development and impact on family life

(2013) Gwendolyn Gramer et al.   JOURNAL OF INHERITED METABOLIC DISEASE

Achieving the “triple aim” for inborn errors of metabolism: a review of challenges to outcomes research and presentation of a new practice-based evidence framework

(2012) Beth K. Potter et al.   GENETICS IN MEDICINE

Parental social support, coping strategies, resilience factors, stress, anxiety and depression levels in parents of children with MPS III (Sanfilippo syndrome) or children with intellectual disabilities (ID)

(2012) Sheena Grant et al.   JOURNAL OF INHERITED METABOLIC DISEASE

Inborn errors of metabolism: Psychosocial challenges and proposed family systems model of intervention

(2012) Stacy L. Weber et al.   MOLECULAR GENETICS AND METABOLISM

Experiences of parents and patients with the timing of Mucopolysaccharidosis type I (MPS I) diagnoses and its relevance to the ethical debate on newborn screening

(2012) Minke H. de Ru et al.   MOLECULAR GENETICS AND METABOLISM

Patterns and Costs of Health Care Use of Children With Medical Complexity

(2012) E. Cohen et al.   PEDIATRICS

Parenting a child with phenylketonuria or galactosemia: implications for health-related quality of life

(2011) Amber E. ten Hoedt et al.   JOURNAL OF INHERITED METABOLIC DISEASE

Parent-Provider-Community Partnerships: Optimizing Outcomes for Children With Disabilities

(2011) N. A. Murphy et al.   PEDIATRICS

The Family-Centered Medical Home: Specific Considerations for Child Health Research and Policy

(2010) Christopher Stille et al.   Academic Pediatrics

Predicting health-related quality of life of parents of children with inherited metabolic diseases

(2009) Janneke Hatzmann et al.   ACTA PAEDIATRICA

Psychosocial aspects of patients with Niemann-Pick disease, type B

(2009) Shelly L. Henderson et al.   AMERICAN JOURNAL OF MEDICAL GENETICS PART A

Psychosocial aspects of PKU: Hidden disabilities – A review☆

(2009) J.K. Gentile et al.   MOLECULAR GENETICS AND METABOLISM