Martha Grootenhuis - Academia.edu (original) (raw)

Papers by Martha Grootenhuis

Research paper thumbnail of Sociaal-maatschappelijke gevolgen en kwaliteit van leven in Nederland bij kinderen en jongvolwassenen opgegroeid met een chronische aandoening

Research paper thumbnail of Health-related quality of life in young adults with symptoms of constipation continuing from childhood into adulthood

Health and Quality of Life Outcomes, 2009

BACKGROUND: Children with functional constipation report impaired Health-related Quality of Life ... more BACKGROUND: Children with functional constipation report impaired Health-related Quality of Life (HRQoL) in relation to physical complaints and long duration of symptoms. In about one third of children with constipation, symptoms continue into adulthood. Knowledge on HRQoL in adults with constipation persisting from childhood is lacking. OBJECTIVES: To assess HRQoL in adults with constipation from early childhood in comparison to

Research paper thumbnail of Health Related Quality of Life in Children with Constipation-Associated Fecal Incontinence

Journal of Pediatrics, 2009

Objectives With a disease-specific questionnaire, this study aimed to evaluate health-related qua... more Objectives 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. Study design Children with constipation-associated fecal incontinence (n = 114), 8 to 18% years, filled out the Defecation Disorder List at a Dutch tertian, hospital. Correlations and linear regression analysis between clinical characteristics and scores on

Research paper thumbnail of Young Adult Patients with a History of Pediatric Disease: Impact on Course of Life and Transition into Adulthood

Journal of Adolescent Health, 2006

PurposeTo assess the course of life of young adults who grew up with a chronic or life-threatenin... more PurposeTo assess the course of life of young adults who grew up with a chronic or life-threatening disease, and to compare their course of life with that of peers from the general population. Optimal transition from pediatric to adult health care requires knowledge of the psychosocial history of patients grown up with a pediatric disease.

Research paper thumbnail of Adverse events of local treatment in long-term head and neck rhabdomyosarcoma survivors after external beam radiotherapy or AMORE treatment

European Journal of Cancer, 2015

Research paper thumbnail of Measuring perceived benefit and disease-related burden in young cancer survivors: validation of the Benefit and Burden Scale for Children (BBSC) in The Netherlands

Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, 2011

Perceiving favourable changes from one's illness may go hand in hand with experiencing harmfu... more Perceiving favourable changes from one's illness may go hand in hand with experiencing harmful psychosocial effects. Each of these constructs should be considered when examining children's levels of psychological adjustment following stressful life events. A paediatric instrument that accounts for both positive and negative impact of stressful events has not been investigated in The Netherlands before. The aim of the study was to investigate psychometric properties of the Dutch version of the Benefit and Burden Scale for Children (BBSC), a 20-item questionnaire that intends to measure potential benefit and burden of illness in children. Dutch paediatric survivors of childhood cancer aged 8-18 (N = 77) completed the BBSC and other psychological questionnaires: Pediatric Quality of Life Inventory (health-related quality of life), State-Trait Anxiety Inventory for Children (anxiety), Children's Revised Impact of Event Scale (posttraumatic stress) and Strengths and Difficult...

Research paper thumbnail of Factors influencing childhood cancer patients to participate in a combined physical and psychosocial intervention program: Quality of Life in Motion

Psycho-oncology, Jan 6, 2014

For a multi-center randomized trial investigating the effects of a 12-week physical and psychosoc... more For a multi-center randomized trial investigating the effects of a 12-week physical and psychosocial intervention program for children with cancer, we invited 174 patients (8-18 years old) on treatment or within 1 year after treatment; about 40% participated. Reasons for non-participation were investigated. Eligible patients received written and verbal information about the study. Those declining to participate were asked to complete questionnaires concerning: reasons for non-participation, daily physical activity, health-related quality of life (HrQoL), and behavioral problems. Participants completed the same questionnaires at baseline (excluding 'reasons for non-participation'). Of 174 eligible patients, 106 did not participate; of these, 61 (57.5%) completed the one-time survey. The main reasons for non-participation as reported by the parents were 'too time consuming' and 'participation is too demanding for my child', while children most frequently report...

Research paper thumbnail of Health related quality of life and parental perceptions of child vulnerability among parents of a child with juvenile idiopathic arthritis: results from a web-based survey

Pediatric rheumatology online journal, 2014

A chronic illness, such as Juvenile Idiopathic Arthritis (JIA), has an impact on the whole family... more A chronic illness, such as Juvenile Idiopathic Arthritis (JIA), has an impact on the whole family, especially on parents caring for the ill child. Therefore the aim of this study is to evaluate parental Health Related Quality of Life (HRQOL) and parental perceptions of child vulnerability (PPCV) and associated variables in parents of a child with JIA. Parents of all JIA patients (0-18 years) in Amsterdam, the Netherlands, were eligible. HRQOL was measured using the TNO-AZL Questionnaire (TAAQOL) and PPCV using the Child Vulnerability Scale (CVS). The HRQOL of parents of a child with JIA was compared to a norm population, and differences between parents of a child with JIA and active arthritis versus parents of a child with JIA without active arthritis were analyzed (ANOVA). For PPCV, parents of a child with JIA were compared to a norm population, including healthy and chronically ill children (Chi(2), Mann-Whitney U test). Variables associated with PPCV were identified by logistic r...

Research paper thumbnail of Parental perceptions of child vulnerability in a community-based sample: Association with chronic illness and health-related quality of life

Journal of child health care : for professionals working with children in the hospital and community, Jan 19, 2014

The study aimed to assess the prevalence of parental perceptions of a child's vulnerability (... more The study aimed to assess the prevalence of parental perceptions of a child's vulnerability (PPCV) in a Dutch community-based sample and its relationship with children's health and health-related quality of life (HRQoL). Parents completed the Child Vulnerability Scale and a socio-demographic questionnaire. The Pediatric Quality of Life Inventory 4.0 was administered to measure HRQoL. The prevalence of PPCV was assessed in relation to socio-demographic and health-related characteristics. In a three-step multiple hierarchical regression model, the mediational role of PPCV in the association between chronic illness and HRQoL was investigated. Participants were 520 Dutch children aged 5-18 years from nine Dutch schools. In all, 69 (13.3%) had a chronic illness; 1.9% was perceived vulnerable, 3.0% in groups 5-7 and 1.7% in groups 8-12 and 13-18. Younger age of the child, presence of a chronic illness and low HRQoL were associated with PPCV. PPCV partially mediated the negative as...

Research paper thumbnail of Long-term quality of life and social outcome of childhood end-stage renal disease

The Journal of pediatrics, 2014

To assess quality of life (QoL) and social status after 30 years of renal-replacement therapy (RR... more To assess quality of life (QoL) and social status after 30 years of renal-replacement therapy (RRT) and to explore determinants of this QoL. The cohort comprised all Dutch patients, born before 1979, who started RRT at age<15 years in 1972-1992. All patients still alive in 2010 were asked to complete questionnaires on QoL (RAND-36) and sociodemographic outcomes. Scores were compared with those in the age-matched general population and with previous patient scores obtained in 2000. We performed logistic regression analysis for prediction of QoL outcomes. A total of 89 of 152 patients still alive in 2010 participated. Compared with the general population, QoL more often was impaired in patients receiving dialysis for most physical domains, in transplanted patients only on general health perception. Both transplanted and dialysis patients had normal or high scores on mental health. Scores in most physical domains were lower than in 2000. Patients were employed less often (61.8% vs 8...

Research paper thumbnail of Emotions, coping and the need for support in families of children with cancer: a model for psychosocial care

Patient education and counseling, 1998

In the case of childhood cancer, the personal threats are severe for both the child, the parents ... more In the case of childhood cancer, the personal threats are severe for both the child, the parents and other family members. For the child, there is the threat to physical integrity, safety, security, and above all, to life. For the parents, there is the threat of losing the child. However, a number of studies have shown that psychopathological disturbances are rarely found in children with cancer or their parents. We may conclude from this that most children and parents use coping strategies that protect them from developing psychopathology. In organising support for families with a child with cancer, much can be learned from children's and parent's perceptions and reactions. When problems of adjustment arise, a thorough analysis of how children and parents perceive their situation, as well as an extensive analysis of their coping efforts, is necessary to direct effective supportive actions. A psychosocial support model is proposed which can be helpful in interpreting these e...

Research paper thumbnail of Parental child-rearing attitudes are associated with functional constipation in childhood

Archives of disease in childhood, Jan 30, 2014

Parenting factors are assumed to play a role in the development and maintenance of childhood cons... more Parenting factors are assumed to play a role in the development and maintenance of childhood constipation. However, knowledge about the association between parenting factors and childhood constipation is limited. This study investigates the association between parental child-rearing attitudes and prominent symptoms of functional constipation and assesses the strength of this association. Cross-sectional data of 133 constipated children and their parents were collected. The gastrointestinal outpatient clinic at the Emma Children's Hospital in the Netherlands. Children with functional constipation aged 4-18 years referred by general practitioners, school doctors and paediatricians. Parental child-rearing attitudes were assessed by the Amsterdam version of the Parental Attitude Research Instrument (A-PARI). Symptoms of constipation in the child were assessed by a standardised interview. Negative binomial and logistic regression models were used to test the association between child...

Research paper thumbnail of Training clinicians in how to use patient-reported outcome measures in routine clinical practice

Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, Jan 15, 2015

Patient-reported outcome measures (PROs) were originally developed for comparing groups of people... more Patient-reported outcome measures (PROs) were originally developed for comparing groups of people in clinical trials and population studies, and the results were used to support treatment recommendations or inform health policy, but there was not direct benefit for the participants providing PROs data. However, as the experience in using those measures increased, it became obvious the clinical value in using individual patient PROs profiles in daily practice to identify/monitor symptoms, evaluate treatment outcomes and support shared decision-making. A key issue limiting successful implementation is clinicians' lack of knowledge on how to effectively utilize PROs data in their clinical encounters. Using a change management theoretical framework, this paper describes the development and implementation of three programs for training clinicians to effectively use PRO data in routine practice. The training programs are in three diverse clinical areas (adult oncology, lung transplant...

Research paper thumbnail of Reporting health-related quality of life scores to physicians during routine follow-up visits of pediatric oncology patients: Is it effective?

Pediatric Blood & Cancer, 2011

The aim of the current study is to investigate the effectiveness of an intervention that provides... more The aim of the current study is to investigate the effectiveness of an intervention that provides health-related quality of life (HRQOL) scores of the patient (the QLIC-ON PROfile) to the pediatric oncologist. Children with cancer participated in a sequential cohort intervention study: intervention N = 94, control N = 99. Primary outcomes of effectiveness were communication about HRQOL domains (t-test, Mann-Whitney U-test) and identification of HRQOL problems (chi-squared test). Secondary outcomes were satisfaction (multilevel analysis), referrals (chi-squared test), and HRQOL (multilevel analysis). The QLIC-ON PROfile increased discussion of emotional functioning (control M = 32.9 vs. intervention M = 47.4, P &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt; 0.05) and psychosocial functioning (M = 56.9 vs. M = 63.8, P &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt; 0.05). Additionally more emotional problems remained unidentified in the control compared to the intervention group, for example, anger (control 26% vs. intervention 3%, P &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt; 0.01), fear (14% vs. 0%, P &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt; 0.01), and sadness (26% vs. 0%, P &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt; 0.001). The intervention had no effect on satisfaction and referrals, but did improve HRQOL of patients 5-7 years of age with respect to self-esteem (P &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt; 0.05), family activities (P &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt; 0.05), and psychosocial functioning (P &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt; 0.01). We conclude that a PRO is a helpful tool for systematic monitoring HRQOL of children with cancer, without lengthening the duration of the consultation. It is recommended to be implemented in clinical practice.

Research paper thumbnail of Adjustment and coping by parents of children with cancer: a review of the literature

Supportive Care in Cancer, 1997

Studies published since about 1980 on psychological adjustment and coping of parents of children ... more Studies published since about 1980 on psychological adjustment and coping of parents of children with cancer were reviewed. First, results concerning parental adjustment in terms of psychological distress, marital distress, and family functioning were summarized. Secondly, the use of coping strategies such as social support, communication, and search for meaning were described. Thirdly, factors that influence parental adjustment to childhood cancer, such as coping strategies and illness-related and demographic variables were discussed. All studies are summarized in a review table, with information about the number of participating parents and children, the purpose, measures and major results. Difficulties in generalizing findings are possibly due to the heterogeneous group of children with cancer, the differences in reporting emotional problems by mothers and fathers, the difficulties in assessing illness-specific problems, and the diversity in the ways of assessing coping and adjustment.

Research paper thumbnail of Predictors of Parental Emotional Adjustment to Childhood Cancer

Psycho-Oncology, 1997

A cadem ic M edical Center, University of A m sterdam , the E m m a K inderz iek enhuis, Pediatri... more A cadem ic M edical Center, University of A m sterdam , the E m m a K inderz iek enhuis, Pediatric Psychosocial D epartm ent, A m sterdam , T he N etherlands

Research paper thumbnail of Psychometric qualities of the Dutch version of the Pediatric Inventory for Parents (PIP): a multi-center study

Psycho-Oncology, 2010

Objectives: Diagnosis and treatment of childhood cancer are continuous stressors in the lives of ... more Objectives: Diagnosis and treatment of childhood cancer are continuous stressors in the lives of the entire family involved. Disease-related tools for the assessment of parental stress and adaptation are scarce. For that reason, the Pediatric Inventory for Parents (PIP), a diseaserelated measure, was translated into Dutch and its psychometric qualities were determined to prove its value.

Research paper thumbnail of The course of life of survivors of childhood cancer

Psycho-Oncology, 2005

... The test–retest reliability is good (Last et al., 2000) and the internal consistency of four ... more ... The test–retest reliability is good (Last et al., 2000) and the internal consistency of four out of the five scales developed beforehand is satisfactory (Grootenhuis et al., 2003). The reliability of the development of autonomy scale is moderate, probably because the items concern ...

Research paper thumbnail of Educational achievement, employment and living situation in long-term young adult survivors of childhood cancer in the Netherlands

Psycho-Oncology, 2003

This paper investigated educational achievement, employment status, living situation, marital sta... more This paper investigated educational achievement, employment status, living situation, marital status and offspring in 500 Dutch long-term young adults survivors of childhood cancer (age range, 16-49 years, 47% female). The results were compared with a reference group of 1092 persons with no history of cancer (age range, 15-33 years, 55% female). The impact of demographic and medical characteristics on psychosocial adjustment was studied. All participants completed a self-report questionnaire. The results showed that, although many survivors are functioning well and leading normal lives, a subgroup of survivors were less likely to complete high-school, to attain an advanced graduate degree, to follow normal elementary or secondary school and had to be enrolled more often on learning disabled programs. The percentage of employed survivors was lower than the percentage of employed controls in the comparison group, but more survivors were student or homemaker. Survivors had lower rates of marriage and parenthood, and worried more about their fertility and the risk of their children having cancer. Survivors, especially males, lived more often with their parents. Cranial irradiation dose &lt;or=25 Gy was an important independent prognostic factor of lower educational achievement. Survivors with a history of brain/CNS tumours had a higher risk of being single than survivors with a diagnosis of leukaemia/non-Hodgkin lymphoma. 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.

Research paper thumbnail of Living With Classical Galactosemia: Health-Related Quality of Life Consequences

PEDIATRICS, 2004

t Objective e Classicall galactosemia (McKusick 230400) is an autosomal recessive disorder of gal... more t Objective e Classicall galactosemia (McKusick 230400) is an autosomal recessive disorder of galactose metabolismm caused by a deficiency of galactose-1-phosphate uridyltransferase (GALT;EC 2.7.712).. Treatment, consisting of a severe restriction of dietary galactose, is life saving, butt most patients develop abnormalities despite this diet. The aim of this study was to studyy the influence of galactosemia on the patients Health Related Quality of Life (HRQoL), onn educational levels and on the specific galactosemia-related concerns of these families. Methods s Age-specificc HRQoL questionnaires, a classical galactosemia specific questionnaire designed byy the authors and a list of questions regarding educational attainment were handed out orr sent to all 75 members of the Dutch Galactosemia Society and their families. Results s Sixty-threee (84%) patients with classical galactosemia from 58 families returned the questionnaire.. Concerning HRQoL, significant differences between patients aged 1 to 5 andd healthy children were found on the domains of abdominal complaints and communication.. Patients aged 8 to 15 years differed from their healthy peers on the domain off cognitive function. Mothers of patients aged 6 to 15 reported a significantly lower HRQoLL on the domains of motor and cognitive function. Patients 16 years and older had significantt lower scores on the domains of cognitive and social function. The percentage of patientss who attend special schools i s significantly higher than the general population, and thee educational attainment is significantly lower in patients with classical galactosemia.

Research paper thumbnail of Sociaal-maatschappelijke gevolgen en kwaliteit van leven in Nederland bij kinderen en jongvolwassenen opgegroeid met een chronische aandoening

Research paper thumbnail of Health-related quality of life in young adults with symptoms of constipation continuing from childhood into adulthood

Health and Quality of Life Outcomes, 2009

BACKGROUND: Children with functional constipation report impaired Health-related Quality of Life ... more BACKGROUND: Children with functional constipation report impaired Health-related Quality of Life (HRQoL) in relation to physical complaints and long duration of symptoms. In about one third of children with constipation, symptoms continue into adulthood. Knowledge on HRQoL in adults with constipation persisting from childhood is lacking. OBJECTIVES: To assess HRQoL in adults with constipation from early childhood in comparison to

Research paper thumbnail of Health Related Quality of Life in Children with Constipation-Associated Fecal Incontinence

Journal of Pediatrics, 2009

Objectives With a disease-specific questionnaire, this study aimed to evaluate health-related qua... more Objectives 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. Study design Children with constipation-associated fecal incontinence (n = 114), 8 to 18% years, filled out the Defecation Disorder List at a Dutch tertian, hospital. Correlations and linear regression analysis between clinical characteristics and scores on

Research paper thumbnail of Young Adult Patients with a History of Pediatric Disease: Impact on Course of Life and Transition into Adulthood

Journal of Adolescent Health, 2006

PurposeTo assess the course of life of young adults who grew up with a chronic or life-threatenin... more PurposeTo assess the course of life of young adults who grew up with a chronic or life-threatening disease, and to compare their course of life with that of peers from the general population. Optimal transition from pediatric to adult health care requires knowledge of the psychosocial history of patients grown up with a pediatric disease.

Research paper thumbnail of Adverse events of local treatment in long-term head and neck rhabdomyosarcoma survivors after external beam radiotherapy or AMORE treatment

European Journal of Cancer, 2015

Research paper thumbnail of Measuring perceived benefit and disease-related burden in young cancer survivors: validation of the Benefit and Burden Scale for Children (BBSC) in The Netherlands

Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, 2011

Perceiving favourable changes from one's illness may go hand in hand with experiencing harmfu... more Perceiving favourable changes from one's illness may go hand in hand with experiencing harmful psychosocial effects. Each of these constructs should be considered when examining children's levels of psychological adjustment following stressful life events. A paediatric instrument that accounts for both positive and negative impact of stressful events has not been investigated in The Netherlands before. The aim of the study was to investigate psychometric properties of the Dutch version of the Benefit and Burden Scale for Children (BBSC), a 20-item questionnaire that intends to measure potential benefit and burden of illness in children. Dutch paediatric survivors of childhood cancer aged 8-18 (N = 77) completed the BBSC and other psychological questionnaires: Pediatric Quality of Life Inventory (health-related quality of life), State-Trait Anxiety Inventory for Children (anxiety), Children's Revised Impact of Event Scale (posttraumatic stress) and Strengths and Difficult...

Research paper thumbnail of Factors influencing childhood cancer patients to participate in a combined physical and psychosocial intervention program: Quality of Life in Motion

Psycho-oncology, Jan 6, 2014

For a multi-center randomized trial investigating the effects of a 12-week physical and psychosoc... more For a multi-center randomized trial investigating the effects of a 12-week physical and psychosocial intervention program for children with cancer, we invited 174 patients (8-18 years old) on treatment or within 1 year after treatment; about 40% participated. Reasons for non-participation were investigated. Eligible patients received written and verbal information about the study. Those declining to participate were asked to complete questionnaires concerning: reasons for non-participation, daily physical activity, health-related quality of life (HrQoL), and behavioral problems. Participants completed the same questionnaires at baseline (excluding 'reasons for non-participation'). Of 174 eligible patients, 106 did not participate; of these, 61 (57.5%) completed the one-time survey. The main reasons for non-participation as reported by the parents were 'too time consuming' and 'participation is too demanding for my child', while children most frequently report...

Research paper thumbnail of Health related quality of life and parental perceptions of child vulnerability among parents of a child with juvenile idiopathic arthritis: results from a web-based survey

Pediatric rheumatology online journal, 2014

A chronic illness, such as Juvenile Idiopathic Arthritis (JIA), has an impact on the whole family... more A chronic illness, such as Juvenile Idiopathic Arthritis (JIA), has an impact on the whole family, especially on parents caring for the ill child. Therefore the aim of this study is to evaluate parental Health Related Quality of Life (HRQOL) and parental perceptions of child vulnerability (PPCV) and associated variables in parents of a child with JIA. Parents of all JIA patients (0-18 years) in Amsterdam, the Netherlands, were eligible. HRQOL was measured using the TNO-AZL Questionnaire (TAAQOL) and PPCV using the Child Vulnerability Scale (CVS). The HRQOL of parents of a child with JIA was compared to a norm population, and differences between parents of a child with JIA and active arthritis versus parents of a child with JIA without active arthritis were analyzed (ANOVA). For PPCV, parents of a child with JIA were compared to a norm population, including healthy and chronically ill children (Chi(2), Mann-Whitney U test). Variables associated with PPCV were identified by logistic r...

Research paper thumbnail of Parental perceptions of child vulnerability in a community-based sample: Association with chronic illness and health-related quality of life

Journal of child health care : for professionals working with children in the hospital and community, Jan 19, 2014

The study aimed to assess the prevalence of parental perceptions of a child's vulnerability (... more The study aimed to assess the prevalence of parental perceptions of a child's vulnerability (PPCV) in a Dutch community-based sample and its relationship with children's health and health-related quality of life (HRQoL). Parents completed the Child Vulnerability Scale and a socio-demographic questionnaire. The Pediatric Quality of Life Inventory 4.0 was administered to measure HRQoL. The prevalence of PPCV was assessed in relation to socio-demographic and health-related characteristics. In a three-step multiple hierarchical regression model, the mediational role of PPCV in the association between chronic illness and HRQoL was investigated. Participants were 520 Dutch children aged 5-18 years from nine Dutch schools. In all, 69 (13.3%) had a chronic illness; 1.9% was perceived vulnerable, 3.0% in groups 5-7 and 1.7% in groups 8-12 and 13-18. Younger age of the child, presence of a chronic illness and low HRQoL were associated with PPCV. PPCV partially mediated the negative as...

Research paper thumbnail of Long-term quality of life and social outcome of childhood end-stage renal disease

The Journal of pediatrics, 2014

To assess quality of life (QoL) and social status after 30 years of renal-replacement therapy (RR... more To assess quality of life (QoL) and social status after 30 years of renal-replacement therapy (RRT) and to explore determinants of this QoL. The cohort comprised all Dutch patients, born before 1979, who started RRT at age<15 years in 1972-1992. All patients still alive in 2010 were asked to complete questionnaires on QoL (RAND-36) and sociodemographic outcomes. Scores were compared with those in the age-matched general population and with previous patient scores obtained in 2000. We performed logistic regression analysis for prediction of QoL outcomes. A total of 89 of 152 patients still alive in 2010 participated. Compared with the general population, QoL more often was impaired in patients receiving dialysis for most physical domains, in transplanted patients only on general health perception. Both transplanted and dialysis patients had normal or high scores on mental health. Scores in most physical domains were lower than in 2000. Patients were employed less often (61.8% vs 8...

Research paper thumbnail of Emotions, coping and the need for support in families of children with cancer: a model for psychosocial care

Patient education and counseling, 1998

In the case of childhood cancer, the personal threats are severe for both the child, the parents ... more In the case of childhood cancer, the personal threats are severe for both the child, the parents and other family members. For the child, there is the threat to physical integrity, safety, security, and above all, to life. For the parents, there is the threat of losing the child. However, a number of studies have shown that psychopathological disturbances are rarely found in children with cancer or their parents. We may conclude from this that most children and parents use coping strategies that protect them from developing psychopathology. In organising support for families with a child with cancer, much can be learned from children's and parent's perceptions and reactions. When problems of adjustment arise, a thorough analysis of how children and parents perceive their situation, as well as an extensive analysis of their coping efforts, is necessary to direct effective supportive actions. A psychosocial support model is proposed which can be helpful in interpreting these e...

Research paper thumbnail of Parental child-rearing attitudes are associated with functional constipation in childhood

Archives of disease in childhood, Jan 30, 2014

Parenting factors are assumed to play a role in the development and maintenance of childhood cons... more Parenting factors are assumed to play a role in the development and maintenance of childhood constipation. However, knowledge about the association between parenting factors and childhood constipation is limited. This study investigates the association between parental child-rearing attitudes and prominent symptoms of functional constipation and assesses the strength of this association. Cross-sectional data of 133 constipated children and their parents were collected. The gastrointestinal outpatient clinic at the Emma Children's Hospital in the Netherlands. Children with functional constipation aged 4-18 years referred by general practitioners, school doctors and paediatricians. Parental child-rearing attitudes were assessed by the Amsterdam version of the Parental Attitude Research Instrument (A-PARI). Symptoms of constipation in the child were assessed by a standardised interview. Negative binomial and logistic regression models were used to test the association between child...

Research paper thumbnail of Training clinicians in how to use patient-reported outcome measures in routine clinical practice

Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, Jan 15, 2015

Patient-reported outcome measures (PROs) were originally developed for comparing groups of people... more Patient-reported outcome measures (PROs) were originally developed for comparing groups of people in clinical trials and population studies, and the results were used to support treatment recommendations or inform health policy, but there was not direct benefit for the participants providing PROs data. However, as the experience in using those measures increased, it became obvious the clinical value in using individual patient PROs profiles in daily practice to identify/monitor symptoms, evaluate treatment outcomes and support shared decision-making. A key issue limiting successful implementation is clinicians' lack of knowledge on how to effectively utilize PROs data in their clinical encounters. Using a change management theoretical framework, this paper describes the development and implementation of three programs for training clinicians to effectively use PRO data in routine practice. The training programs are in three diverse clinical areas (adult oncology, lung transplant...

Research paper thumbnail of Reporting health-related quality of life scores to physicians during routine follow-up visits of pediatric oncology patients: Is it effective?

Pediatric Blood & Cancer, 2011

The aim of the current study is to investigate the effectiveness of an intervention that provides... more The aim of the current study is to investigate the effectiveness of an intervention that provides health-related quality of life (HRQOL) scores of the patient (the QLIC-ON PROfile) to the pediatric oncologist. Children with cancer participated in a sequential cohort intervention study: intervention N = 94, control N = 99. Primary outcomes of effectiveness were communication about HRQOL domains (t-test, Mann-Whitney U-test) and identification of HRQOL problems (chi-squared test). Secondary outcomes were satisfaction (multilevel analysis), referrals (chi-squared test), and HRQOL (multilevel analysis). The QLIC-ON PROfile increased discussion of emotional functioning (control M = 32.9 vs. intervention M = 47.4, P &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt; 0.05) and psychosocial functioning (M = 56.9 vs. M = 63.8, P &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt; 0.05). Additionally more emotional problems remained unidentified in the control compared to the intervention group, for example, anger (control 26% vs. intervention 3%, P &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt; 0.01), fear (14% vs. 0%, P &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt; 0.01), and sadness (26% vs. 0%, P &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt; 0.001). The intervention had no effect on satisfaction and referrals, but did improve HRQOL of patients 5-7 years of age with respect to self-esteem (P &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt; 0.05), family activities (P &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt; 0.05), and psychosocial functioning (P &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt; 0.01). We conclude that a PRO is a helpful tool for systematic monitoring HRQOL of children with cancer, without lengthening the duration of the consultation. It is recommended to be implemented in clinical practice.

Research paper thumbnail of Adjustment and coping by parents of children with cancer: a review of the literature

Supportive Care in Cancer, 1997

Studies published since about 1980 on psychological adjustment and coping of parents of children ... more Studies published since about 1980 on psychological adjustment and coping of parents of children with cancer were reviewed. First, results concerning parental adjustment in terms of psychological distress, marital distress, and family functioning were summarized. Secondly, the use of coping strategies such as social support, communication, and search for meaning were described. Thirdly, factors that influence parental adjustment to childhood cancer, such as coping strategies and illness-related and demographic variables were discussed. All studies are summarized in a review table, with information about the number of participating parents and children, the purpose, measures and major results. Difficulties in generalizing findings are possibly due to the heterogeneous group of children with cancer, the differences in reporting emotional problems by mothers and fathers, the difficulties in assessing illness-specific problems, and the diversity in the ways of assessing coping and adjustment.

Research paper thumbnail of Predictors of Parental Emotional Adjustment to Childhood Cancer

Psycho-Oncology, 1997

A cadem ic M edical Center, University of A m sterdam , the E m m a K inderz iek enhuis, Pediatri... more A cadem ic M edical Center, University of A m sterdam , the E m m a K inderz iek enhuis, Pediatric Psychosocial D epartm ent, A m sterdam , T he N etherlands

Research paper thumbnail of Psychometric qualities of the Dutch version of the Pediatric Inventory for Parents (PIP): a multi-center study

Psycho-Oncology, 2010

Objectives: Diagnosis and treatment of childhood cancer are continuous stressors in the lives of ... more Objectives: Diagnosis and treatment of childhood cancer are continuous stressors in the lives of the entire family involved. Disease-related tools for the assessment of parental stress and adaptation are scarce. For that reason, the Pediatric Inventory for Parents (PIP), a diseaserelated measure, was translated into Dutch and its psychometric qualities were determined to prove its value.

Research paper thumbnail of The course of life of survivors of childhood cancer

Psycho-Oncology, 2005

... The test–retest reliability is good (Last et al., 2000) and the internal consistency of four ... more ... The test–retest reliability is good (Last et al., 2000) and the internal consistency of four out of the five scales developed beforehand is satisfactory (Grootenhuis et al., 2003). The reliability of the development of autonomy scale is moderate, probably because the items concern ...

Research paper thumbnail of Educational achievement, employment and living situation in long-term young adult survivors of childhood cancer in the Netherlands

Psycho-Oncology, 2003

This paper investigated educational achievement, employment status, living situation, marital sta... more This paper investigated educational achievement, employment status, living situation, marital status and offspring in 500 Dutch long-term young adults survivors of childhood cancer (age range, 16-49 years, 47% female). The results were compared with a reference group of 1092 persons with no history of cancer (age range, 15-33 years, 55% female). The impact of demographic and medical characteristics on psychosocial adjustment was studied. All participants completed a self-report questionnaire. The results showed that, although many survivors are functioning well and leading normal lives, a subgroup of survivors were less likely to complete high-school, to attain an advanced graduate degree, to follow normal elementary or secondary school and had to be enrolled more often on learning disabled programs. The percentage of employed survivors was lower than the percentage of employed controls in the comparison group, but more survivors were student or homemaker. Survivors had lower rates of marriage and parenthood, and worried more about their fertility and the risk of their children having cancer. Survivors, especially males, lived more often with their parents. Cranial irradiation dose &lt;or=25 Gy was an important independent prognostic factor of lower educational achievement. Survivors with a history of brain/CNS tumours had a higher risk of being single than survivors with a diagnosis of leukaemia/non-Hodgkin lymphoma. 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.

Research paper thumbnail of Living With Classical Galactosemia: Health-Related Quality of Life Consequences

PEDIATRICS, 2004

t Objective e Classicall galactosemia (McKusick 230400) is an autosomal recessive disorder of gal... more t Objective e Classicall galactosemia (McKusick 230400) is an autosomal recessive disorder of galactose metabolismm caused by a deficiency of galactose-1-phosphate uridyltransferase (GALT;EC 2.7.712).. Treatment, consisting of a severe restriction of dietary galactose, is life saving, butt most patients develop abnormalities despite this diet. The aim of this study was to studyy the influence of galactosemia on the patients Health Related Quality of Life (HRQoL), onn educational levels and on the specific galactosemia-related concerns of these families. Methods s Age-specificc HRQoL questionnaires, a classical galactosemia specific questionnaire designed byy the authors and a list of questions regarding educational attainment were handed out orr sent to all 75 members of the Dutch Galactosemia Society and their families. Results s Sixty-threee (84%) patients with classical galactosemia from 58 families returned the questionnaire.. Concerning HRQoL, significant differences between patients aged 1 to 5 andd healthy children were found on the domains of abdominal complaints and communication.. Patients aged 8 to 15 years differed from their healthy peers on the domain off cognitive function. Mothers of patients aged 6 to 15 reported a significantly lower HRQoLL on the domains of motor and cognitive function. Patients 16 years and older had significantt lower scores on the domains of cognitive and social function. The percentage of patientss who attend special schools i s significantly higher than the general population, and thee educational attainment is significantly lower in patients with classical galactosemia.