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SP0191 Measuring Quality of Life in Young Adults with Jia in Clinical Practice

Annals of the rheumatic diseases, 2015-06, Vol.74 (Suppl 2), p.46-46

Haverman, L.

2015

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Dutch norms for the Strengths and Difficulties Questionnaire (SDQ) - parent form for children aged 2-18 years

Health and quality of life outcomes, 2018-06, Vol.16 (1), p.123-123, Article 123

2018

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Paediatric health-related quality of life: what is it and why should we measure it?

Archives of disease in childhood, 2017-05, Vol.102 (5), p.393

2017

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Health related quality of life in Dutch infants, toddlers, and young children

Health and quality of life outcomes, 2017-04, Vol.15 (1), p.81-81, Article 81

2017

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Anxiety and Depression in Mothers and Fathers of a Chronically Ill Child

Maternal and child health journal, 2014-10, Vol.18 (8), p.1993-2002

2014

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Effectiveness of time-limited eye movement desensitization reprocessing therapy for parents of children with a rare life-limiting illness: a randomized clinical trial

Orphanet journal of rare diseases, 2022-09, Vol.17 (1), p.1-328, Article 328

2022

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Distress and post-traumatic stress in parents of patients with congenital gastrointestinal malformations: a cross-sectional cohort study

Orphanet journal of rare diseases, 2022-09, Vol.17 (1), p.1-353, Article 353

2022

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Health-related quality of life of perinatally HIV-infected young people: a longitudinal study

AIDS care, 2022-02, Vol.34 (2), p.263-271

2022

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Development of a condition‐specific patient‐reported outcome measure for measuring symptoms and appearance in vascular malformations: the OVAMA questionnaire

British journal of dermatology (1951), 2021-10, Vol.185 (4), p.797-803

2021

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Psychometric properties of the Dutch-Flemish PROMIS® pediatric item banks Anxiety and Depressive Symptoms in a general population

Quality of life research, 2021-09, Vol.30 (9), p.2683-2695

2021

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Predictors of health‐related quality of life in children and adolescents with juvenile idiopathic arthritis: Results from a web‐based survey

Arthritis care & research (2010), 2012-05, Vol.64 (5), p.694-703

2012

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Health‐related quality of life questionnaires in individuals with haemophilia: a systematic review of their measurement properties

Haemophilia : the official journal of the World Federation of Hemophilia, 2017-07, Vol.23 (4), p.497-510

2017

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Quantification of stress exposure in very preterm infants: Development of the NeO-stress score

Early human development, 2023-01, Vol.176, p.105696-105696, Article 105696

2023

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Male gender, school attendance and sports participation are positively associated with health‐related quality of life in children and adolescents with congenital bleeding disorders

Haemophilia : the official journal of the World Federation of Hemophilia, 2018-05, Vol.24 (3), p.395-404

2018

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Pyridoxine-dependent epilepsy (PDE-ALDH7A1) in adulthood: A Dutch pilot study exploring clinical and patient-reported outcomes

Molecular genetics and metabolism reports, 2022-06, Vol.31, p.100853-100853, Article 100853

2022

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Psychosocial functioning of mothers of boys with haemophilia

Haemophilia : the official journal of the World Federation of Hemophilia, 2016-01, Vol.22 (1), p.e57-e60

2016

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Health-related quality of life, developmental milestones, and self-esteem in young adults with bleeding disorders

Quality of life research, 2018-01, Vol.27 (1), p.159-171

2018

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Measuring anxiety and depression in young adult men with haemophilia using PROMIS

Haemophilia : the official journal of the World Federation of Hemophilia, 2022-05, Vol.28 (3), p.e79-e82

2022

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Themes in daily life of adolescents and young adults with congenital bleeding disorders: a qualitative study

Haemophilia : the official journal of the World Federation of Hemophilia, 2016-07, Vol.22 (4), p.e330-e333

2016

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5599344 IMPACT OF HOSPITAL ADMISSION FOR VASO‐OCCLUSIVE CRISIS ON HEALTH‐RELATED QUALITY OF LIFE IN CHILDREN WITH SICKLE CELL DISEASE

HemaSphere, 2023-04, Vol.7 (S1), p.37-37

2023

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5606726 IMPACT OF ALLOGENEIC STEM CELL TRANSPLANTATION ON PHYSICAL, MENTAL, AND SOCIAL HEALTH OF ADULT SICKLE CELL DISEASE PATIENTS: A MIXED‐METHODS STUDY

HemaSphere, 2023-04, Vol.7 (S1), p.9-10

2023

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Patient reported outcomes in pediatric oncology practice: Suggestions for future usage by parents and pediatric oncologists

Pediatric blood & cancer, 2014-09, Vol.61 (9), p.1707-1710

2014

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Psychosocial care for children with haemophilia and their parents in the Netherlands

Haemophilia : the official journal of the World Federation of Hemophilia, 2017-05, Vol.23 (3), p.362-369

2017

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PB2227: HEALTH‐RELATED QUALITY OF LIFE OVER TIME IN PEDIATRIC PATIENTS WITH SICKLE CELL DISEASE ADMITTED FOR VASO‐OCCLUSIVE CRISIS

HemaSphere, 2022-06, Vol.6 (Suppl), p.2097-2098

2022

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Reliability, validity and evaluation of the Haemophilia Coping and Perception Test

Haemophilia : the official journal of the World Federation of Hemophilia, 2015-05, Vol.21 (3), p.e243-e246

2015

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SP0191 Measuring Quality of Life in Young Adults with Jia in Clinical Practice

Dutch norms for the Strengths and Difficulties Questionnaire (SDQ) - parent form for children aged 2-18 years

Paediatric health-related quality of life: what is it and why should we measure it?

Health related quality of life in Dutch infants, toddlers, and young children

Anxiety and Depression in Mothers and Fathers of a Chronically Ill Child

Effectiveness of time-limited eye movement desensitization reprocessing therapy for parents of children with a rare life-limiting illness: a randomized clinical trial

Distress and post-traumatic stress in parents of patients with congenital gastrointestinal malformations: a cross-sectional cohort study

Health-related quality of life of perinatally HIV-infected young people: a longitudinal study

Development of a condition‐specific patient‐reported outcome measure for measuring symptoms and appearance in vascular malformations: the OVAMA questionnaire

Psychometric properties of the Dutch-Flemish PROMIS® pediatric item banks Anxiety and Depressive Symptoms in a general population

Predictors of health‐related quality of life in children and adolescents with juvenile idiopathic arthritis: Results from a web‐based survey

Health‐related quality of life questionnaires in individuals with haemophilia: a systematic review of their measurement properties

Quantification of stress exposure in very preterm infants: Development of the NeO-stress score

Male gender, school attendance and sports participation are positively associated with health‐related quality of life in children and adolescents with congenital bleeding disorders

Pyridoxine-dependent epilepsy (PDE-ALDH7A1) in adulthood: A Dutch pilot study exploring clinical and patient-reported outcomes

Psychosocial functioning of mothers of boys with haemophilia

Health-related quality of life, developmental milestones, and self-esteem in young adults with bleeding disorders

Measuring anxiety and depression in young adult men with haemophilia using PROMIS

Themes in daily life of adolescents and young adults with congenital bleeding disorders: a qualitative study

5599344 IMPACT OF HOSPITAL ADMISSION FOR VASO‐OCCLUSIVE CRISIS ON HEALTH‐RELATED QUALITY OF LIFE IN CHILDREN WITH SICKLE CELL DISEASE

5606726 IMPACT OF ALLOGENEIC STEM CELL TRANSPLANTATION ON PHYSICAL, MENTAL, AND SOCIAL HEALTH OF ADULT SICKLE CELL DISEASE PATIENTS: A MIXED‐METHODS STUDY

Patient reported outcomes in pediatric oncology practice: Suggestions for future usage by parents and pediatric oncologists

Psychosocial care for children with haemophilia and their parents in the Netherlands

PB2227: HEALTH‐RELATED QUALITY OF LIFE OVER TIME IN PEDIATRIC PATIENTS WITH SICKLE CELL DISEASE ADMITTED FOR VASO‐OCCLUSIVE CRISIS

Reliability, validity and evaluation of the Haemophilia Coping and Perception Test

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