Publications by authors named "Martha Grootenhuis"
Pediatric health-related quality of life questionnaires in clinical trials.
Curr Opin Allergy Clin Immunol
June 2006
Purpose Of Review: 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.
Recent Findings: The often-applied short form of the Child Health Questionnaire (CHQ-PF28) provides reliable physical and psychosocial summary measures, but reliable estimates for each scale require the longer version (CHQ-PF50). In addition to this questionnaire, the Pediatric Quality of Life Inventory is another reliable and valid measure.
Little is known about the impact of the course of life of children with end-stage renal disease (ESRD) on their quality of life in adulthood. We therefore assessed the course of life of adult patients with onset of ESRD at an age of <15 years between 1972 and 1992 and compared it with that of the general population. Furthermore, we explored how course of life is associated with quality of life (QoL) in young adulthood.
View Article and Find Full Text PDFBackground: Completing therapy is one of the major transitions in care in the practice of pediatric oncology and, therefore, deserves special consideration. 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.
Methods: HRQOL of 126 patients, aged 1-15 years, on average 2 months after the end of successful treatment, was assessed with the TNO-AZL Pre-school Quality of life Questionnaire and the TNO-AZL Children's Quality of life Questionnaire.
Objective: 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).
Methods: This study approached parents of child survivors of SMD treated on the PICU between 1993-2001. Five cross-sectional groups were created for mothers and fathers separately.
Article Synopsis
- The study aimed to evaluate employment success and social independence among adults who had end-stage renal disease during childhood, along with identifying key influencing factors.
- Researchers analyzed data from 144 Dutch patients (ages 0-15 diagnosed from 1972-1992) to assess their employment status, living arrangements, social participation, and health perceptions.
- Findings indicated that these patients face higher unemployment rates and lower occupational levels compared to their peers, with prolonged dialysis linked to reduced job skills and more adults living with parents, particularly among males.
Background: This study aimed to study how inflammatory bowel disease (IBD) affects health-related quality of life (HRQoL) during adolescence and to examine how self-esteem influences HRQoL.
Methods: We compared self-esteem, anxiety, and parental reports on behavioral problems in a group of IBD patients to a healthy norm group. Forty children and 38 parents filled out questionnaires separately.
Objective: 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.
Methods: Three recently published reviews on psychological consequences of surviving childhood cancer were reanalyzed according to (1) inclusion of young or older survivors, (2) 5-year periods of publication, (3) country/area (North America, Europe, or Australia), (4) journal type, (5) number of survivors, (6) design of the study, (7) inclusion of a control group, (8) diagnosis, and (9) the use of standardized instruments on different domains.
Results: The comparisons show some descriptive differences depending on the origin of study, as well as difference over time.
Objective: 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.
Methods: Eighty-three siblings (ages 7-19 years) participated. Effects on anxiety, quality of life, behavioral-emotional problems, and emotional reactions to the illness were investigated.
Objective: Classical galactosemia (McKusick 230400) is an autosomal recessive disorder of galactose metabolism caused by a deficiency of galactose-1-phosphate uridyltransferase (EC 2.7.712).
View Article and Find Full Text PDFObjective: To investigate the incidence of alexithymia (difficulties in describing or recognizing one's own emotions, a limited fantasy life, and general constriction in the affective life) in a group of childhood cancer survivors and to explore medical determinants which predict alexithymia.
Methods: Five years after completing therapy, 72 participants were asked to complete the Bermond-Vorst Alexithymia Questionnaire (BVAQ).
Results: Male cancer survivors scored significantly lower on overall alexithymia compared to healthy males.
Background: Little is known about the quality of life of adults with end-stage renal disease (ESRD) since childhood. 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.
Methods: All Dutch adult patients with onset of ESRD at age 0-14 years between 1972 and 1992 were asked to complete the RAND-36 questionnaire.