Martha A Grootenhuis

Summary

Affiliation: Academic Medical Center
Country: The Netherlands

Publications

  1. ncbi request reprint Health-related quality of life problems of children aged 8-11 years with a chronic disease
    M A Grootenhuis
    Psychosocial Department, Emma Children s Hospital Academic Medical Centre, Amsterdam, The Netherlands
    Dev Neurorehabil 10:27-33. 2007
  2. pmc Health-related quality of life, anxiety and depression in young adults with disability benefits due to childhood-onset somatic conditions
    Eefje Verhoof
    Psychosocial Department, Emma Children s Hospital, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands
    Child Adolesc Psychiatry Ment Health 7:12. 2013
  3. pmc Cognitive development in patients with Mucopolysaccharidosis type III (Sanfilippo syndrome)
    Marlies J Valstar
    Department of Pediatrics and Amsterdam Lysosome Center Sphinx, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands
    Orphanet J Rare Dis 6:43. 2011
  4. ncbi request reprint Adjustment and coping by parents of children with cancer: a review of the literature
    M A Grootenhuis
    Emma Kinderziekenhuis, Academic Medical Center, University of Amsterdam, The Netherlands
    Support Care Cancer 5:466-84. 1997
  5. doi request reprint Evaluation of a psychoeducational intervention for adolescents with inflammatory bowel disease
    Martha A Grootenhuis
    Pediatric Psychosocial Department, Emma Children s Hospital, Academic Medical Centre, University of Amsterdam, Amsterdam, The Netherlands
    Eur J Gastroenterol Hepatol 21:340-5. 2009
  6. ncbi request reprint The impact of delayed development on the quality of life of adults with end-stage renal disease since childhood
    Martha Alexandra Grootenhuis
    Paediatric Psychosocial Department, Emma Children s Hospital AMC, University of Amsterdam, P O Box 22700, 1100 DE Amsterdam, The Netherlands
    Pediatr Nephrol 21:538-44. 2006
  7. ncbi request reprint Evaluation of a psychoeducational intervention for adolescents with inflammatory bowel disease
    Martha A Grootenhuis
    Pediatric Psychosocial Department, Emma Children s Hospital, Academic Medical Centre, University of Amsterdam, The Netherlands
    Eur J Gastroenterol Hepatol 21:430-5. 2009
  8. pmc Living with muscular dystrophy: health related quality of life consequences for children and adults
    Martha A Grootenhuis
    Pediatric Psychosocial Department, Emma Children s Hospital AMC, Amsterdam, The Netherlands
    Health Qual Life Outcomes 5:31. 2007
  9. ncbi request reprint Children with cancer with different survival perspectives: defensiveness, control strategies, and psychological adjustment
    M A Grootenhuis
    Emma Kinderziekenhuis, Academic Medical Center, University of Amsterdam, Netherlands
    Psychooncology 10:305-14. 2001
  10. doi request reprint An explorative study on quality of life and psychological and cognitive function in pediatric survivors of septic shock
    Madelon B Bronner
    Psychosocial Department, Pediatric Intensive Care Unit, Emma Children s Hospital, Academic Medical Center, Amsterdam, Netherlands
    Pediatr Crit Care Med 10:636-42. 2009

Detail Information

Publications99

  1. ncbi request reprint Health-related quality of life problems of children aged 8-11 years with a chronic disease
    M A Grootenhuis
    Psychosocial Department, Emma Children s Hospital Academic Medical Centre, Amsterdam, The Netherlands
    Dev Neurorehabil 10:27-33. 2007
    ..It is concluded that using an indicator variable of the norm 25th percentile seems important in identifying at-risk children with chronic disease...
  2. pmc Health-related quality of life, anxiety and depression in young adults with disability benefits due to childhood-onset somatic conditions
    Eefje Verhoof
    Psychosocial Department, Emma Children s Hospital, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands
    Child Adolesc Psychiatry Ment Health 7:12. 2013
    ....
  3. pmc Cognitive development in patients with Mucopolysaccharidosis type III (Sanfilippo syndrome)
    Marlies J Valstar
    Department of Pediatrics and Amsterdam Lysosome Center Sphinx, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands
    Orphanet J Rare Dis 6:43. 2011
    ..However, no large scale studies on cognitive levels in MPS III patients, using formal psychometric tests, have been reported...
  4. ncbi request reprint Adjustment and coping by parents of children with cancer: a review of the literature
    M A Grootenhuis
    Emma Kinderziekenhuis, Academic Medical Center, University of Amsterdam, The Netherlands
    Support Care Cancer 5:466-84. 1997
    ....
  5. doi request reprint Evaluation of a psychoeducational intervention for adolescents with inflammatory bowel disease
    Martha A Grootenhuis
    Pediatric Psychosocial Department, Emma Children s Hospital, Academic Medical Centre, University of Amsterdam, Amsterdam, The Netherlands
    Eur J Gastroenterol Hepatol 21:340-5. 2009
    ....
  6. ncbi request reprint The impact of delayed development on the quality of life of adults with end-stage renal disease since childhood
    Martha Alexandra Grootenhuis
    Paediatric Psychosocial Department, Emma Children s Hospital AMC, University of Amsterdam, P O Box 22700, 1100 DE Amsterdam, The Netherlands
    Pediatr Nephrol 21:538-44. 2006
    ..Paediatric nephrologists should pay more attention to the development of social and independent functioning of children with ESRD in order to prepare them for active participation in society in adult life...
  7. ncbi request reprint Evaluation of a psychoeducational intervention for adolescents with inflammatory bowel disease
    Martha A Grootenhuis
    Pediatric Psychosocial Department, Emma Children s Hospital, Academic Medical Centre, University of Amsterdam, The Netherlands
    Eur J Gastroenterol Hepatol 21:430-5. 2009
    ....
  8. pmc Living with muscular dystrophy: health related quality of life consequences for children and adults
    Martha A Grootenhuis
    Pediatric Psychosocial Department, Emma Children s Hospital AMC, Amsterdam, The Netherlands
    Health Qual Life Outcomes 5:31. 2007
    ..Muscular dystrophies are chronic diseases manifesting with progressive muscle weakness leading to decreasing activities and participation. To understand the impact on daily life, it is important to determine patients' quality of life...
  9. ncbi request reprint Children with cancer with different survival perspectives: defensiveness, control strategies, and psychological adjustment
    M A Grootenhuis
    Emma Kinderziekenhuis, Academic Medical Center, University of Amsterdam, Netherlands
    Psychooncology 10:305-14. 2001
    ..The strength of the study is the inclusion of a substantial group of children with cancer who have a reduced survival perspective...
  10. doi request reprint An explorative study on quality of life and psychological and cognitive function in pediatric survivors of septic shock
    Madelon B Bronner
    Psychosocial Department, Pediatric Intensive Care Unit, Emma Children s Hospital, Academic Medical Center, Amsterdam, Netherlands
    Pediatr Crit Care Med 10:636-42. 2009
    ..To evaluate self-reported health-related quality of life, anxiety, depression, and cognitive function in pediatric septic shock survivors...
  11. ncbi request reprint Longitudinal assessment of health-related quality of life in preschool children with non-CNS cancer after the end of successful treatment
    Heleen Maurice-Stam
    Psychosocial Department, Emma Children s Hospital, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands
    Pediatr Blood Cancer 50:1047-51. 2008
    ..The aim of the study was to access Health Related Quality of Life (HRQoL) in preschool cancer survivors during the first 3 years of continuous remission after the end of successful treatment, and to identify predictors of HRQoL...
  12. doi request reprint Development and validation of the distress thermometer for parents of a chronically ill child
    Lotte Haverman
    Psychosocial Department, Academic Medical Center Emma Children s Hospital, Amsterdam, The Netherlands Electronic address
    J Pediatr 163:1140-6.e2. 2013
    ..To develop and validate a Distress Thermometer for Parents (DT-P) for chronically ill children and to determine a cutoff score for clinical distress...
  13. doi request reprint Predicting health-related quality of life of parents of children with inherited metabolic diseases
    Janneke Hatzmann
    Psycho Social Department, Emma Children s Hospital, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands
    Acta Paediatr 98:1205-10. 2009
    ..The aim of this study was to examine medical, socio-demographic and psychosocial determinants of health-related quality of life (HRQoL) of parents of children with metabolic diseases...
  14. pmc Double disadvantage: a case control study on health-related quality of life in children with sickle cell disease
    Channa T Hijmans
    Psychosocial Department, Emma Children s Hospital, Academic Medical Center, P O Box 304, 1100 VC Amsterdam, The Netherlands
    Health Qual Life Outcomes 8:121. 2010
    ..The aim of this study was to investigate the HRQoL of children with SCD, controlling for SES by comparing them to healthy siblings (matched for age and gender), and to a Dutch norm population...
  15. pmc Neurofeedback to improve neurocognitive functioning of children treated for a brain tumor: design of a randomized controlled double-blind trial
    Marieke A de Ruiter
    Psychosocial Department, Emma Children s Hospital AMC, room A3 241, Meibergdreef 9, Amsterdam 1105 AZ, The Netherlands
    BMC Cancer 12:581. 2012
    ..This paper describes the protocol of the PRISMA study, a randomized controlled trial to investigate the efficacy of neurofeedback to improve neurocognitive functioning in children treated for a brain tumor...
  16. pmc Quality of life in children three and nine months after discharge from a paediatric intensive care unit: a prospective cohort study
    Hendrika Knoester
    Paediatric Intensive Care Unit, Emma Children s Hospital, Academic Medical Centre, Meibergdreef 9, 1105 AZ Amsterdam, The Netherlands
    Health Qual Life Outcomes 6:21. 2008
    ..Awareness of HRQoL consequences and physical sequelae could lead to changes in support during the acute phase and thereafter. The aim of this study was to evaluate HRQoL in PICU survivors...
  17. ncbi request reprint Health-related quality of life in children and emotional reactions of parents following completion of cancer treatment
    Heleen Stam
    Pediatric Psychosocial Department, Emma Children s Hospital, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands
    Pediatr Blood Cancer 47:312-9. 2006
    ..The purpose of the study was to investigate health-related quality of life (HRQOL) of pediatric patients, and emotional reactions of their parents, shortly after the end of successful treatment...
  18. doi request reprint Efficacy of psychosocial group intervention for children with chronic illness and their parents
    Linde Scholten
    Psychosocial Department, Emma Children s Hospital Academic Medical Center, Meibergdreef 9, room A3 241, 1105 AZ Amsterdam, Netherlands
    Pediatrics 131:e1196-203. 2013
    ..To investigate the efficacy of a cognitive-behavioral group intervention for children with chronic illnesses and to test the effect of an added parent component...
  19. doi request reprint Effectiveness of a web-based application to monitor health-related quality of life
    Lotte Haverman
    Emma Children s Hospital AMC, Meibergdreef 9, room A3 241, 1105 AZ Amsterdam, Netherlands
    Pediatrics 131:e533-43. 2013
    ..Children with juvenile idiopathic arthritis (JIA) are at risk for HRQoL problems. The aim of this study was to investigate the effectiveness of ePROs in clinical pediatric rheumatology care...
  20. doi request reprint Neurocognitive consequences of a paediatric brain tumour and its treatment: a meta-analysis
    Marieke A de Ruiter
    Pediatric Psychosocial Department, Emma Children s Hospital Academic Medical Center, Amsterdam, The Netherlands
    Dev Med Child Neurol 55:408-17. 2013
    ....
  21. doi request reprint Evaluation of cognitive and motor development in toddlers with congenital hypothyroidism diagnosed by neonatal screening
    Liesbeth van der Sluijs Veer
    Psychosocial Department, Emma Children s Hospital AMC, University of Amsterdam, Amsterdam, The Netherlands
    J Dev Behav Pediatr 33:633-40. 2012
    ..The present study examined whether the advancement of treatment modality has resulted in improved cognitive and motor outcomes...
  22. pmc A predictive model of Health Related Quality of life of parents of chronically ill children: the importance of care-dependency of their child and their support system
    Janneke Hatzmann
    Psycho Social Department, Emma Children s Hospital, Academic Medical Center, University of Amsterdam, The Netherlands
    Health Qual Life Outcomes 7:72. 2009
    ..Aim of the present study was to explore the influence of demographic and disease related factors on parental HRQoL, mediated by employment, income, leisure time, holiday and emotional support in a comprehensive model...
  23. ncbi request reprint Emotional functioning of parents of children with cancer: the first five years of continuous remission after the end of treatment
    Heleen Maurice-Stam
    Psychosocial Department, Emma Children s Hospital Academic Medical Center, University of Amsterdam, The Netherlands
    Psychooncology 17:448-59. 2008
    ..The aim of this study is to investigate parental emotional functioning during the first five years of continuous remission after the end of their child's treatment and to identify predictors of parental emotional functioning...
  24. doi request reprint Course of life of survivors of childhood cancer is related to quality of life in young adulthood
    Heleen Maurice-Stam
    Paediatric Psychosocial Department, Emma Children s Hospital, Academic Medical Center, University of Amsterdam, Meibergdreef 9, NL 1105 AZ Amsterdam, The Netherlands
    J Psychosoc Oncol 25:43-58. 2007
    ..Health-care providers should help to minimize the harm for children who grow up with cancer by encouraging social and psychosexual development. Children should be encouraged to make friends and to participate in peer activities...
  25. doi request reprint Childhood brain tumor survivors at risk for impaired health-related quality of life
    Eline J Aukema
    Departments of Psychosocial Pediatric Oncology, Emma Children s Hospital, Academic Medical Center AMC, University of Amsterdam Department of Developmental Psychology, VU University, Amsterdam, The Netherlands
    J Pediatr Hematol Oncol 35:603-9. 2013
    ..It is recommended to systematically monitor HRQOL in CBTS regardless of the therapy applied. ..
  26. ncbi request reprint Young adult patients with a history of pediatric disease: impact on course of life and transition into adulthood
    Heleen Stam
    Pediatric Psychosocial Department, Emma Children s Hospital AMC, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands
    J Adolesc Health 39:4-13. 2006
    ..Optimal transition from pediatric to adult health care requires knowledge of the psychosocial history of patients grown up with a pediatric disease...
  27. doi request reprint Hidden consequences of success in pediatrics: parental health-related quality of life--results from the Care Project
    Janneke Hatzmann
    Psycho Social Department, Emma Children s Hospital, Academic Medical Center, University of Amsterdam, Amsterdam, Netherlands
    Pediatrics 122:e1030-8. 2008
    ..A detailed description of parental health-related quality of life will add to the understanding of the impact of caring for a chronically ill child. This will contribute to pediatric family care...
  28. doi request reprint Evaluation of a psycho-educational group intervention for children treated for cancer: a descriptive pilot study
    Heleen Maurice-Stam
    Psychosocial Department, Emma Children s Hospital, Academic Medical Center, Amsterdam, The Netherlands
    Psychooncology 18:762-6. 2009
    ..OK Onco is aimed at empowerment of survivors of childhood cancer by teaching disease-related skills. The purpose of this pilot study is to evaluate whether OK Onco was appropriate for use among paediatric survivors of childhood cancer...
  29. doi request reprint Defining chronic diseases and health conditions in childhood (0-18 years of age): national consensus in the Netherlands
    Lidwine B Mokkink
    Psychosocial Department, Emma Children s Hospital, Academic Medical Centre, University of Amsterdam, Amsterdam, The Netherlands
    Eur J Pediatr 167:1441-7. 2008
    ..By this systematic and thorough procedure, national consensus on a comprehensive definition of chronic conditions in children which can be used for epidemiological research was reached...
  30. doi request reprint Health related quality of life in children with constipation-associated fecal incontinence
    Marloes E J Bongers
    Department of Pediatric Gastroenterology and Nutrition, Emma Children s Hospital, Academic Medical Center, Amsterdam, The Netherlands
    J Pediatr 154:749-53. 2009
    ..With a disease-specific questionnaire, this study aimed to evaluate health-related quality of life (HRQoL) in children with constipation in association with clinical characteristics...
  31. doi request reprint Behavioral and emotional problems in children with sickle cell disease and healthy siblings: Multiple informants, multiple measures
    Channa T Hijmans
    Psychosocial Department, Emma Children s Hospital, Academic Medical Center, Amsterdam, The Netherlands
    Pediatr Blood Cancer 53:1277-83. 2009
    ....
  32. doi request reprint Neurocognitive deficits in children with sickle cell disease are associated with the severity of anemia
    Channa T Hijmans
    Psychosocial Department, Emma Children s Hospital, Academic Medical Center, Amsterdam, The Netherlands
    Pediatr Blood Cancer 57:297-302. 2011
    ..The aim of this study was to investigate the association of laboratory markers of disease severity and radiological parameters with neurocognitive functioning in children with SCD...
  33. doi request reprint Health-related quality of life and psychosocial developmental trajectory in young female beneficiaries with JIA
    Lotte Haverman
    Psychosocial Department, Emma Children s Hospital, Academic Medical Centre, A3 241, Meibergdreef 9, 1105 AZ Amsterdam, The Netherlands
    Rheumatology (Oxford) 51:368-74. 2012
    ..This study assessed the health-related quality of life (HRQOL) and the psychosocial developmental trajectory of young female beneficiaries with JIA compared with peers from the Dutch general population...
  34. pmc Parenting a child with phenylketonuria or galactosemia: implications for health-related quality of life
    Amber E Ten Hoedt
    Department of Pediatrics H7 270, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands
    J Inherit Metab Dis 34:391-8. 2011
    ..The insight that emotional support and loss of friendship influence the HRQoL of the parents enables treating physicians to provide better support for these parents...
  35. pmc Measuring perceived benefit and disease-related burden in young cancer survivors: validation of the Benefit and Burden Scale for Children (BBSC) in The Netherlands
    Heleen Maurice-Stam
    Paediatric Psychosocial Department, Emma Children s Hospital Academic Medical Centre, Amsterdam, The Netherlands
    Support Care Cancer 19:1249-53. 2011
    ....
  36. doi request reprint Course and predictors of posttraumatic stress disorder in parents after pediatric intensive care treatment of their child
    Madelon B Bronner
    Psychosocial Department, Emma Children s Hospital AMC, The Netherlands
    J Pediatr Psychol 35:966-74. 2010
    ..To study posttraumatic stress disorder (PTSD) in parents after unexpected pediatric intensive care unit (PICU) treatment of their child and to identify risk factors for its development...
  37. ncbi request reprint Psychosocial indicators of health-related quality of life in children with cancer 2 months after end of successful treatment
    Heleen Maurice-Stam
    Pediatric Psychosocial Department, Emma Children s Hospital, Academic Medical Center, University of Amsterdam, The Netherlands
    J Pediatr Hematol Oncol 29:540-50. 2007
    ..Several other psychosocial variables were indicative of better HRQoL but further research is needed to confirm and to understand the relationship between psychosocial variables and HRQoL...
  38. ncbi request reprint Social consequences in adult life of end-stage renal disease in childhood
    Jaap W Groothoff
    Department of Pediatric Nephrology, Emma Children s Hospital AMC, University of Amsterdam, PO Box 22700, 1100 DE Amsterdam, The Netherlands
    J Pediatr 146:512-7. 2005
    ..To describe employment achievement and social independence of adults with childhood end-stage renal disease (ESRD) and to explore determining factors...
  39. doi request reprint Neurocognitive deficits in children with sickle cell disease: a comprehensive profile
    Channa T Hijmans
    Psychosocial Department, Emma Children s Hospital, Academic Medical Center, Amsterdam, The Netherlands
    Pediatr Blood Cancer 56:783-8. 2011
    ..The aim of the current study was to evaluate a broad range of neurocognitive functions in children with SCD compared to a SES-matched control group, in order to gain more insight into the specific deficits of these patients...
  40. doi request reprint Prevalence and associated clinical characteristics of behavior problems in constipated children
    Marieke Van Dijk
    MSc, Emma Children s Hospital, Academic Medical Center, Psychosocial Department, Room G8 224, PO Box 22700, 1100 DE Amsterdam, Netherlands
    Pediatrics 125:e309-17. 2010
    ....
  41. doi request reprint Quality of life and behavioral functioning in Dutch children with a history of Kawasaki disease
    Carline E Tacke
    Pediatric Hematology, Immunology and Infectious Diseases Department, Emma Children s Hospital, Academic Medical Center, Amsterdam, The Netherlands
    J Pediatr 161:314-9.e1. 2012
    ..The authors evaluated health-related quality of life (HRQOL) and behavioral functioning in patients with a history of Kawasaki disease (KD)...
  42. pmc Health-related quality of life in young adults with symptoms of constipation continuing from childhood into adulthood
    Marloes E J Bongers
    Department of Pediatric Gastroenterology and Nutrition, Emma Children s Hospital, Academic Medical Centre, Meibergdreef 9, 1105 AZ Amsterdam, The Netherlands
    Health Qual Life Outcomes 7:20. 2009
    ..In about one third of children with constipation, symptoms continue into adulthood. Knowledge on HRQoL in adults with constipation persisting from childhood is lacking...
  43. pmc A cognitive behavioral based group intervention for children with a chronic illness and their parents: a multicentre randomized controlled trial
    Linde Scholten
    Emma Children s Hospital Academic Medical Center Amsterdam, Psychosocial Department, Amsterdam, The Netherlands
    BMC Pediatr 11:65. 2011
    ..A secondary objective is to investigate why and for whom this intervention works, in order to understand the underlying mechanisms of the intervention effect...
  44. doi request reprint Behavioral therapy for childhood constipation: a randomized, controlled trial
    Marieke Van Dijk
    Psychosocial Department, Emma Children s Hospital, Academic Medical Center, Room G8 224, PO Box 22700, 1100 DE Amsterdam, The Netherlands
    Pediatrics 121:e1334-41. 2008
    ..Our aim was to evaluate the clinical effectiveness of behavioral therapy with laxatives compared with conventional treatment in treating functional constipation in childhood...
  45. ncbi request reprint Positive effects of a psycho-educational group intervention for children with a chronic disease: first results
    Bob F Last
    Psychosocial Department, Emma Children s Hospital, Academic Medical Center, Amsterdam, The Netherlands
    Patient Educ Couns 65:101-12. 2007
    ..To determine the effectiveness of a psycho-educational group intervention for chronically ill children...
  46. pmc Explorative study on the aftercare of pediatric brain tumor survivors: a parents' perspective
    Eline J Aukema
    Psychosocial Department, Emma Children s Hospital Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands
    Support Care Cancer 19:1637-46. 2011
    ....
  47. doi request reprint Impact of growing up with Fabry disease on achievement of psychosocial milestones and quality of life
    Machtelt G Bouwman
    Department of Pediatrics, Academic Medical Center and Amsterdam Lysosome Center, Sphinx, University of Amsterdam, Meibergdreef 9, 1105 AZ, Amsterdam, The Netherlands
    Mol Genet Metab 104:308-13. 2011
    ..Quality of life was decreased in Fabry males in the domains of physical functioning and bodily pain and of general health perception in females...
  48. pmc Health related quality of life of Dutch children: psychometric properties of the PedsQL in the Netherlands
    Vivian Engelen
    Psychosocial Department, Academic Medical Centre Emma Children s Hospital, and Department of Education, University of Amsterdam, Amsterdam, The Netherlands
    BMC Pediatr 9:68. 2009
    ..Aim of the current study is to collect Dutch reference data of the PedsQL and subsequently assess reliability, socio-demographic within-group differences and construct validity...
  49. doi request reprint Follow-up after paediatric intensive care treatment: parental posttraumatic stress
    Madelon B Bronner
    Psychosocial Department, Emma Children s Hospital AMC, Amsterdam, The Netherlands
    Acta Paediatr 97:181-6. 2008
    ..To study the prevalence of posttraumatic stress in parents after an acute admission to a paediatric intensive care unit (PICU) and to determine risk factors for the development of posttraumatic stress...
  50. ncbi request reprint Long-term psychological distress in parents of child survivors of severe meningococcal disease
    Tirtsa R Ehrlich
    Pediatric Psychosocial Department, Emma Children s Hospital Academic Medical Centre of the University of Amsterdam, Amsterdam, The Netherlands
    Pediatr Rehabil 8:220-4. 2005
    ..To study psychological distress in parents of child survivors of Severe Meningococcal Disease (SMD) after discharge of their child from the Paediatric Intensive Care Unit (PICU)...
  51. ncbi request reprint Quality of life in adults with end-stage renal disease since childhood is only partially impaired
    Jaap W Groothoff
    Department of Paediatric Nephrology, Emma Children s Hospital AMC, University of Amsterdam, PO Box 22700, 1100 DE Amsterdam, The Netherlands
    Nephrol Dial Transplant 18:310-7. 2003
    ..In a long-term follow-up study, we assessed quality of life in these patients and compared their outcomes with those in the general population and in dialysis patients with adult-onset of ESRD...
  52. doi request reprint The course of life of patients with childhood atopic dermatitis
    Elian E A Brenninkmeijer
    Department of Dermatology, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands
    Pediatr Dermatol 26:14-22. 2009
    ..More insight in the course of life, disease-specific consequences and quality of life of atopic dermatitis is of high importance, especially in case of severe atopic dermatitis...
  53. ncbi request reprint Coping and family functioning predict longitudinal psychological adaptation of siblings of childhood cancer patients
    Bregje A Houtzager
    Pediatric Psychosocial Department, Academic Medical Center, University of Amsterdam
    J Pediatr Psychol 29:591-605. 2004
    ..To assess associations of coping and family functioning with psychosocial adjustment in siblings of pediatric cancer patients at 1, 6, 12, and 24 months after diagnosis...
  54. ncbi request reprint Educational achievement, employment and living situation in long-term young adult survivors of childhood cancer in the Netherlands
    N E Langeveld
    Department of Paediatric Oncology, Emma Kinderziekenhuis, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands
    Psychooncology 12:213-25. 2003
    ..These results indicate that important aspects of life are affected in a substantial number of persons who have been diagnosed with cancer during childhood or adolescence...
  55. doi request reprint Remarkable differences: the course of life of young adults with galactosaemia and PKU
    A M Bosch
    Department of Pediatrics, Academic Medical Center, University of Amsterdam, G8205, Meibergdreef 9, 1105 AZ, Amsterdam, The Netherlands
    J Inherit Metab Dis 32:706-12. 2009
    ..We conclude that it is essential that parents and clinicians encourage children with galactosaemia to participate in peer-related activities in order to stimulate social performance, which may result in a more normal CoL...
  56. ncbi request reprint Quality of life in paediatric inflammatory bowel disease measured by a generic and a disease-specific questionnaire
    H J Loonen
    Department of Paediatrics, Emma Children s Hospital, AMC, Amsterdam, The Netherlands
    Acta Paediatr 91:348-54. 2002
    ..The Impact-II discriminated well between patients with varying disease activity states on all domains...
  57. doi request reprint Health related quality of life in Dutch young adults: psychometric properties of the PedsQL generic core scales young adult version
    Perrine F Limperg
    Psychosocial Department, Emma Children s Hospital, Academic Medical Center, A3 241, Postbox 22660 1100 DD Amsterdam, The Netherlands
    Health Qual Life Outcomes 12:9. 2014
    ....
  58. pmc Health- related quality of life and self-worth in 10-year old children with congenital hypothyroidism diagnosed by neonatal screening
    Liesbeth van der Sluijs Veer
    Pediatric Psychosocial Department, Emma Children s Hospital AMC, A3 241, P, O, Box 22700, 1100, DE, Amsterdam, The Netherlands
    Child Adolesc Psychiatry Ment Health 6:32. 2012
    ..abstract:..
  59. doi request reprint Sleep disorders in children after treatment for a CNS tumour
    Lisa M Verberne
    Department of Pediatric Oncology, Emma Children s Hospital, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands
    J Sleep Res 21:461-9. 2012
    ..Further investigation should focus on possibilities to improve sleep quality and diminish fatigue...
  60. ncbi request reprint Neonatal screening for congenital hypothyroidism in the Netherlands: cognitive and motor outcome at 10 years of age
    Marlies J E Kempers
    Department of Pediatric Endocrinology, Emma Children s Hospital Academic Medical Center, University of Amsterdam, P O Box 22700, 1100 DE Amsterdam, The Netherlands
    J Clin Endocrinol Metab 92:919-24. 2007
    ....
  61. pmc Monitoring health-related quality of life in paediatric practice: development of an innovative web-based application
    Lotte Haverman
    Psychosocial Department, Emma Children s Hospital, Academic Medical Center, Meibergdreef 9, 1105 AZ Amsterdam, The Netherlands
    BMC Pediatr 11:3. 2011
    ..The aim of the current article is to describe the development and introduction of a new web-based application for the use of PROs in daily paediatric clinical practice...
  62. doi request reprint White matter fractional anisotropy correlates with speed of processing and motor speed in young childhood cancer survivors
    Eline J Aukema
    Pediatric Psychosocial Department, Emma Children s Hospital Academic Medical Center, Amsterdam, The Netherlands
    Int J Radiat Oncol Biol Phys 74:837-43. 2009
    ..To determine whether childhood medulloblastoma and acute lymphoblastic leukemia (ALL) survivors have decreased white matter fractional anisotropy (WMFA) and whether WMFA is related to the speed of processing and motor speed...
  63. pmc Outcome of paediatric intensive care survivors
    Hendrika Knoester
    Paediatric Intensive Care Unit, Emma Children s Hospital, Academic Medical Centre, Meibergdreef 9, 1105, AZ, Amsterdam, The Netherlands
    Eur J Pediatr 166:1119-28. 2007
    ..Further well-designed prospective studies evaluating sequelae of the original illness and its treatment are warranted...
  64. ncbi request reprint Coping strategies and quality of life of adolescents with inflammatory bowel disease
    H J van der Zaag-Loonen
    Department of Paediatric Gastroenterology and Nutrition, Academic Medical Centre, University of Amsterdam, Amsterdam, The Netherlands
    Qual Life Res 13:1011-9. 2004
    ....
  65. doi request reprint Health-related quality of life after completion of successful treatment for childhood cancer
    V Engelen
    Psychosocial Department, Academic Medical Centre Emma Children s Hospital, Amsterdam, The Netherlands
    Pediatr Blood Cancer 56:646-53. 2011
    ..This study determined HRQOL of children with cancer shortly after the end of successful treatment compared with normative values...
  66. ncbi request reprint Posttraumatic stress symptoms in adult survivors of childhood cancer
    N E Langeveld
    Department of Paediatric Oncology From the Late Effects Study Group, Emma Kinderziekenhuis, Academic Medical Center, University of Amsterdam, The Netherlands
    Pediatr Blood Cancer 42:604-10. 2004
    ..In addition, the impact of demographic, medical and treatment factors on survivors' posttraumatic stress symptoms was studied...
  67. ncbi request reprint Quality of life, anxiety and concerns among statin-treated children with familial hypercholesterolaemia and their parents
    S de Jongh
    Department of Vascular Medicine, University of Amsterdam, Amsterdam, The Netherlands
    Acta Paediatr 92:1096-101. 2003
    ..To assess the quality of life, anxiety and concerns among statin-treated children with familial hypercholesterolaemia (FH) and their parents...
  68. ncbi request reprint One month after diagnosis: quality of life, coping and previous functioning in siblings of children with cancer
    B A Houtzager
    Academic Medical Center, University of Amsterdam, Pediatric Psychosocial Department, Amsterdam, The Netherlands
    Child Care Health Dev 31:75-87. 2005
    ..The aim of the present study is to describe the quality of life (QoL) of siblings of children with cancer and to predict it according to their health before the diagnosis of cancer in the ill child and their ways of coping with the illness...
  69. ncbi request reprint Psychosocial functioning in siblings of paediatric cancer patients one to six months after diagnosis
    B A Houtzager
    Academic Medical Center, Paediatric Psychosocial Department, University of Amsterdam, Meibergdreef 9, 1105AZ Amsterdam, The Netherlands
    Eur J Cancer 39:1423-32. 2003
    ..Thus, QoL is impaired shortly after diagnosis. Adolescent siblings risk persisting problems in daily functioning. Further prospective research on other risk factors such as coping and family functioning over time is needed...
  70. ncbi request reprint Emotions, coping and the need for support in families of children with cancer: a model for psychosocial care
    B F Last
    Emma Kinderziekenhuis, Academic Medical Center, University of Amsterdam, The Netherlands
    Patient Educ Couns 33:169-79. 1998
    ..A psychosocial support model is proposed which can be helpful in interpreting these emotions and coping strategies...
  71. ncbi request reprint Adjustment of siblings to childhood cancer: a literature review
    B A Houtzager
    Emma Kinderziekenhuis, Academic Medical Center, University of Amsterdam, The Netherlands
    Support Care Cancer 7:302-20. 1999
    ..The lack of longitudinal studies, the precarious definitions and confounding of coping and adaptation, and the marginal role of siblings' coping efforts were identified as the most striking deficiencies in current research...
  72. ncbi request reprint Supportive groups for siblings of pediatric oncology patients: impact on anxiety
    B A Houtzager
    Emma Kinderziekenhuis AMC, Academic Medical Center, University of Amsterdam, Netherlands
    Psychooncology 10:315-24. 2001
    ..Results must nevertheless be interpreted cautiously, considering the small number of siblings participating in the study, the lack of a control group and the restriction to one outcome measure...
  73. ncbi request reprint Social and emotional adjustment in young survivors of childhood cancer
    H Stam
    Emma Kinderziekenhuis Academic Medical Center, University of Amsterdam, The Netherlands
    Support Care Cancer 9:489-513. 2001
    ....
  74. doi request reprint Impact of childhood vitiligo on adult life
    M W Linthorst Homan
    Netherlands Institute for Pigment Disorders, and Department of Dermatology, Academic Medical Centre, University of Amsterdam, Meibergdreef 35, 1105 AZ Amsterdam, The Netherlands
    Br J Dermatol 159:915-20. 2008
    ..The onset of vitiligo occurs before the age of 20 years in 50% of patients. Having a chronic disease in childhood can impede a child's health-related quality of life (HRQL)...
  75. ncbi request reprint Quality of life in young adult survivors of childhood cancer
    N E Langeveld
    Department of Paediatric Oncology, Emma Kinderziekenhuis, Academic Medical Centre, University of Amsterdam, Meibergdreef 9, 1105 AZ Amsterdam, The Netherlands
    Support Care Cancer 10:579-600. 2002
    ..Additional data are needed to help us understand the needs of survivors and to identify those subgroups of survivors who are at greatest risk for the adverse sequelae of the disease and its treatment...
  76. ncbi request reprint No excess fatigue in young adult survivors of childhood cancer
    N E Langeveld
    The Late Effects Study Group, Department of Paediatric Oncology, Emma Kinderziekenhuis, Academic Medical Center, University of Amsterdam, The Netherlands
    Eur J Cancer 39:204-14. 2003
    ..Further research is needed to clarify the undoubtedly complex somatic and psychological mechanisms responsible for the development, maintenance and treatment of fatigue in childhood cancer survivors...
  77. ncbi request reprint Sibling self-report, parental proxies, and quality of life: the importance of multiple informants for siblings of a critically ill child
    B A Houtzager
    Academic Medical Center, Paediatric Psychosocial Department, University of Amsterdam, Amsterdam, The Netherlands
    Pediatr Hematol Oncol 22:25-40. 2005
    ..These results imply that assessment of self-reported well-being is especially relevant in siblings of a critically ill child, to obtain a realistic image of siblings' QoL. Further studies on sibling QoL are needed...
  78. doi request reprint A community-based survey of posttraumatic stress disorder in the Netherlands
    M B Bronner
    Psychosocial Department, Emma Children s Hospital Academic Medical Center, Amsterdam, The Netherlands
    J Trauma Stress 22:74-8. 2009
    ..Stressful medical events were moderately associated with PTSD. Prevalence of PTSD was elevated among single women and middle-aged men...
  79. doi request reprint A predictive model of health-related quality of life in young adult survivors of childhood cancer
    H Maurice-Stam
    Pediatric Psychosocial Department, Emma Children s Hospital, Academic Medical Center, University of Amsterdam, The Netherlands
    Eur J Cancer Care (Engl) 18:339-49. 2009
    ..Screening survivors medically as well as psychosocially could help to identify patients with the greatest needs and direct interventions by which the follow-up care could be improved...
  80. ncbi request reprint Quality of life and current coping in young adult survivors of childhood cancer: positive expectations about the further course of the disease were correlated with better quality of life
    H Stam
    Paediatric Psychosocial Department, Emma Children s Hospital, Academic Medical Center, University of Amsterdam, G8 224 Meibergdreef 9, NL 1105 AZ Amsterdam, The Netherlands
    Psychooncology 15:31-43. 2006
    ..The purpose of this study was to (1) assess health-related quality of life (HRQoL), and (2) to explore the role of cognitive coping in relation to HRQoL...
  81. ncbi request reprint The course of life and quality of life of early and continuously treated Dutch patients with phenylketonuria
    A M Bosch
    Department of Pediatrics, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands
    J Inherit Metab Dis 30:29-34. 2007
    ..The results of this study demonstrate that although PKU is a chronic disease with the burden of strict dietary control, early and continuously treated patients with PKU can have a normal health-related quality of life and course of life...
  82. pmc Health related quality of life in disorders of defecation: the Defecation Disorder List
    W P Voskuijl
    Department of Paediatric Gastroenterology and Nutrition, Emma Children s Hospital Academic Medical Center, Amsterdam, Netherlands
    Arch Dis Child 89:1124-7. 2004
    ..Constipation and encopresis frequently cause problems with respect to emotional wellbeing, and social and family life. Instruments to measure Health Related Quality of Life (HRQoL) in these disorders are not available...
  83. doi request reprint Quality of life, developmental milestones, and self-esteem of young adults with congenital hypothyroidism diagnosed by neonatal screening
    L van der Sluijs Veer
    Pediatric Psychosocial Department, Emma Children s Hospital Academic Medical Center, Amsterdam, The Netherlands
    J Clin Endocrinol Metab 93:2654-61. 2008
    ..Although much is written about cognitive and motor development, little is known about emotional and social consequences for patients growing up with CH, diagnosed by neonatal screening...
  84. doi request reprint School-aged children after the end of successful treatment of non-central nervous system cancer: longitudinal assessment of health-related quality of life, anxiety and coping
    H Maurice-Stam
    Psychosocial Department, Emma Kinderziekenhuis Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands
    Eur J Cancer Care (Engl) 18:401-10. 2009
    ..As a group, survivors regained good HRQoL from 1 year after treatment. Monitoring and screening survivors are necessary to be able to trace the survivors at risk of worse HRQoL...
  85. ncbi request reprint Quality of life, self-esteem and worries in young adult survivors of childhood cancer
    N E Langeveld
    Department of Paediatric Oncology, Emma Kinderziekenhuis, Academic Medical Center, University of Amsterdam, Netherlands
    Psychooncology 13:867-81. 2004
    ..The investigated factors could explain poor quality of life and worries only to a limited extent. Further research exploring determinants and indices of quality of life and worries in LTS is warranted...
  86. ncbi request reprint The course of life of survivors of childhood cancer
    H Stam
    Paediatric Psychosocial Department, Emma Children s Hospital, Academic Medical Center, University of Amsterdam, The Netherlands
    Psychooncology 14:227-38. 2005
    ..A considerably lower percentage of survivors than peers in the comparison group were married or living together, and/or employed. Their educational level, on the other hand, was as high as that of their peers...
  87. ncbi request reprint Quality of life and psychological adaptation in siblings of paediatric cancer patients, 2 years after diagnosis
    B A Houtzager
    Paediatric Psychosocial Department, Academic Medical Center, University of Amsterdam, Meibergdreef 9, Amsterdam 1105AZ, The Netherlands
    Psychooncology 13:499-511. 2004
    ..The concept quality of life has primarily been applied in research on the effects of chronic illness on the affected patient, but has not yet been studied in siblings...
  88. ncbi request reprint Intellectual and motor development of young adults with congenital hypothyroidism diagnosed by neonatal screening
    M J E Kempers
    Emma Children s Hospital Academic Medical Center, Department of Pediatric Endocrinology, Academic Medical Center, University of Amsterdam, G8 205, P O Box 22700, 1100 DE Amsterdam, The Netherlands
    J Clin Endocrinol Metab 91:418-24. 2006
    ..Hence, it is still unclear whether the frequently reported cognitive and motor deficits observed during childhood persist in adulthood...
  89. pmc Effect of dexamethasone on quality of life in children with acute lymphoblastic leukaemia: a prospective observational study
    Machteld A G de Vries
    Department of Paediatrics and Division of Oncology Haematology, VU University Medical Centre, Amsterdam, The Netherlands
    Health Qual Life Outcomes 6:103. 2008
    ..The present study was performed to assess the effect of dexamethasone on QoL during treatment for ALL according to this protocol...
  90. pmc Design of the Quality of Life in Motion (QLIM) study: a randomized controlled trial to evaluate the effectiveness and cost-effectiveness of a combined physical exercise and psychosocial training program to improve physical fitness in children with cancer
    Katja I Braam
    Department of Paediatrics, Division of Oncology Haematology, VU University Medical Center, Amsterdam, The Netherlands
    BMC Cancer 10:624. 2010
    ..Also examined is whether positive effects on physical fitness reduce inactivity-related adverse health problems, improve quality of life, and are cost-effective...
  91. ncbi request reprint Chronic childhood constipation: a review of the literature and the introduction of a protocolized behavioral intervention program
    Marieke Van Dijk
    Psychosocial Department, Emma Children s Hospital, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands
    Patient Educ Couns 67:63-77. 2007
    ..To release a newly protocolized behavioral intervention program for children with chronic constipation aged 4-18 years with guidance from literature about underlying theories from which the treatment techniques follow...
  92. ncbi request reprint Living with classical galactosemia: health-related quality of life consequences
    Annet M Bosch
    Department of Pediatrics, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands
    Pediatrics 113:e423-8. 2004
    ..The aim of this study was to study the influence of galactosemia on the patients' health-related quality of life (HRQoL), on educational levels, and on the specific galactosemia-related concerns of these families...
  93. doi request reprint Health-related quality of life and impact of haemangiomas on children and their parents
    Marije J Hoornweg
    Department of Plastic, Reconstructive and Hand Surgery, Academic Medical Center, University of Amsterdam, The Netherlands
    J Plast Reconstr Aesthet Surg 62:1265-71. 2009
    ..Furthermore, we investigated if visibility and a complicated course of the haemangioma had influence on these outcomes...
  94. ncbi request reprint International comparison of contributions to psychosocial research on survivors of childhood cancer: past and future considerations
    Bob F Last
    Pediatric Psychosocial Department, Academic Medical Center, University of Amsterdam, The Netherlands
    J Pediatr Psychol 30:99-113. 2005
    ..To compare the methods and designs, constructs, publication rate, and location of studies in the past 15 years of pediatric psycho-oncology research, across geographic areas and over time...
  95. ncbi request reprint Alexithymia in long-term survivors of childhood cancer
    Marieke Van Dijk
    Psychosocial Department, Academic Medical Center, G8 224, PO Box 22700, 1100 DE Amsterdam, The Netherlands
    Pediatr Rehabil 5:203-7. 2002
    ....
  96. ncbi request reprint Definitions and measurement of chronic health conditions in childhood: a systematic review
    Johanna H van der Lee
    Department of Pediatric Clinical Epidemiology, Emma Children s Hospital, Academic Medical Center, Amsterdam, The Netherlands
    JAMA 297:2741-51. 2007
    ..To obtain valid and reliable estimates of the prevalence of chronic health conditions, a clear definition is needed...
  97. ncbi request reprint Measuring quality of life in children with inflammatory bowel disease: the impact-II (NL)
    H J Loonen
    Department of Pediatric Gastroenterology, Emma Children s Hospital, Academic Medical Center, University of Amsterdam, The Netherlands
    Qual Life Res 11:47-56. 2002
    ..Cross-cultural translation and validation procedures into other languages are being conducted to enable international use of Impact-II...
  98. ncbi request reprint Children with cancer
    M A Grootenhuis
    Pediatric Psychosocial Department, Emma Children s Hospital, Amsterdam, The Netherlands
    Recent Results Cancer Res 168:73-9. 2006
    ..It is very striking that protection is often achieved through protection of the other. Several examples of this strategy will be presented. Finally, attention will be paid to communication about death in the palliative phase...
  99. ncbi request reprint Pediatric health-related quality of life questionnaires in clinical trials
    Hein Raat
    Department of Public Health, Erasmus MC, University Medical Center Rotterdam, The Netherlands
    Curr Opin Allergy Clin Immunol 6:180-5. 2006
    ..This review summarizes recent studies on the feasibility, reliability and validity of pediatric health-related quality of life questionnaires and gives an overview of recent applications of these measures in pediatrics...