Heleen Maurice-Stam

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

BackgroundChildren 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.ObjectivesTo assess HRQoL in adults with constipation from early childhood in comparison to that of their peers. Furthermore to gain insight into the specific social consequences related to continuing symptoms of constipation and/or fecal incontinence at adult age.MethodsOne HRQoL questionnaire and one self-developed questionnaire focusing on specific consequences of symptoms of constipation continuing into adulthood were administrated to 182 adults with a history of childhood constipation. Successful clinical outcome was defined as a defecation frequency three or more times per week with less than two episodes of fecal incontinence per month, irrespective of laxative use. HRQoL of both adults with unsuccessful and successful clinical outcome were compared to a control group of 361 peers from the general Dutch population.ResultsNo differences in HRQoL were found between the whole study population and healthy peers, nor between adults with successful clinical outcome (n = 139) and the control group. Adults with an unsuccessful clinical outcome (n = 43) reported significantly lower HRQoL compared to the control group with respect to scores on bodily pain (mean ± SD 77.4 ± 19.6 versus 85.7 ± 19.5, p = 0.01) and general health (67.6 ± 18.8 versus 74.0 ± 18.1, p = 0.04). Adults with an unsuccessful clinical outcome reported difficulties with social contact and intimacy (20% and 12.5%, respectively), related to their current symptoms. Current therapy in these adults was more often self-administered treatment (e.g. diet modifications) (60.4%) than laxatives (20.9%).ConclusionOverall, young adults with constipation in childhood report a good quality of life, as HRQoL of adults with successful clinical outcome was comparable to that of their peers. However, when childhood constipation continues into adulthood, it influences HRQoL negatively with social consequences in 20% of these adults.

Course of Life of Survivors of Childhood Cancer Is Related to Quality of Life in Young Adulthood

Abstract The aims of this study were to assess the following: (1) The impact of medical determinants on the course of life of survivors of childhood cancer and (2) the impact of the course of life on Quality of Life (QoL) in young adulthood. A total of 353 Dutch cancer survivors, aged 18–30, completed the RAND-36 Health Survey and the Course-of-Life questionnaire. Multiple linear regression analyses were performed. Survivors of brain tumors and survivors having been treated with radiotherapy reported the achievement of significantly fewer milestones in the psychosexual and social domain than the other survivors. Survivors who achieved fewer milestones in the social domain scored worse on QoL. 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.

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

BackgroundParents of chronically ill children are at risk for a lower Health Related Quality of Life (HRQoL). Insight in the dynamics of factors influencing parental HRQoL is necessary for development of interventions. 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.MethodsIn a cross-sectional design, 543 parents of chronically ill children completed questionnaires. A conceptual model of parental HRQoL was developed. Structural equation modeling was performed to explore the relations in the conceptual model, and to test if the model fitted the data.ResultsThe model fitted the data closely (CHISQ(14) = 11.37, p = 0.66; RMSEA = 0.0, 90%CI [0.00;0.034]. The effect of socio-demographic and medical data on HRQoL was mediated by days on holiday (MCS: β = .21) and emotional support (PCS: β = .14; MCS: β = .28). Also, female gender (β = -.10), age (β = .10), being chronically ill as a parent (β = -.34), and care dependency of the child (β = -.14; β = -.15) were directly related to parental HRQoL.ConclusionThe final model was slightly different from the conceptual model. Main factors explaining parental HRQoL seemed to be emotional support, care dependency, days on holiday and being chronically ill as a parent. Holiday and emotional support mediated the effect of demographic and disease-related factors on HRQoL. Hours of employment, leisure time and household income did not mediate between background characteristics and HRQoL, contrasting the hypotheses.

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

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.

Efficacy of psychosocial group intervention for children with chronic illness and their parents.

OBJECTIVE: 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. METHODS: Children (n = 194) and their parents participated in a multicenter randomized clinical trial comparing a child-only intervention and a parent-child intervention to a wait-list control group. Primary outcomes were parent- and self-reported internalizing and externalizing problems; secondary outcomes were child disease-related coping skills (information seeking, relaxation, social competence, medical compliance, and positive thinking). Assessments took place at baseline and at 6- and 12-month follow-ups. Intention-to-treat mixed-model analyses were performed to test the difference in change in outcomes. RESULTS: The intervention had a positive effect on changes in parent-reported internalizing problems, child-reported externalizing problems, information seeking, social competence, and positive thinking. The additional effect of parental involvement was observed on parent-reported internalizing problems, child-reported externalizing problems, information seeking, and social competence. Illness severity and illness type did not moderate the effects. There were no intervention effects on child-reported internalizing problems, parent-reported externalizing problems, relaxation, or medical compliance. Of the families in the wait-list control group, 74% sought alternative psychological support during the intervention period. CONCLUSIONS: This RCT supports the efficacy of a protocol-based group intervention for children with chronic illnesses and their parents. Adding a parental component to the intervention contributed to the persistence of the effects. Future research should focus on moderating and mediating effects of the intervention.

Longitudinal assessment of health-related quality of life in preschool children with non-CNS cancer after the end of successful treatment

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.

Evaluation of a psychoeducational intervention for adolescents with inflammatory bowel disease.

Objectives Inflammatory bowel disease (IBD), comprising Crohns disease, ulcerative colitis, and indeterminate colitis, often has its onset in adolescence. The aim of this study was to evaluate whether a psychoeducational group intervention (aiming to enhance information seeking and giving about the disease, relaxation, social competence, and positive thinking) can strengthen the coping efforts of adolescents with IBD and have a positive effect on their Health-Related Quality of Life (HRQoL). Methods Adolescent IBD patients from the Emma Childrens Hospital AMC and adolescent members of the Crohn and Ulcerative Colitis Association in The Netherlands, were invited to participate in The intervention study. Using reliable and valid self-report instruments the adolescents coping styles, feelings of competence, and HRQoL were assessed before and 6–8 months after the intervention. The parents were asked to fill in the Child Behavior Check List. Linear regression analyses were performed to test whether group participation was predictive of the outcome measures while correcting for the first measurement occasion and sex. Results and conclusion Forty patients responded positively to invitation to the intervention. Eighteen adolescents, however, lived too far away to attend and served as a control group. Twenty-two children were enrolled and attended in groups of four to six children in six group sessions, supervised by two psychologists. The intervention seemed to have a positive effect on: coping (predictive control, P<0.01), feelings of competence (global self-worth, P<0.05 and physical appearance, P<0.01), and HRQoL (body image, P<0.05). These results give good reason to continue this intervention study with a larger population.

Sleep disorders in children after treatment for a CNS tumour

The long‐term survival of children with a central nervous system (CNS) tumour is improving. However, they experience late effects, including altered habits and patterns of sleep. We evaluated the presence and type of sleep disorders and daytime sleepiness in these children, and its associations with clinical characteristics and daily performance (fatigue and psychosocial functioning). In a cross‐sectional study at the outpatient clinic of the Emma Children’s Hospital AMC (February–June 2010), sleep, fatigue and psychosocial functioning were analysed in 31 CNS tumour patients (mean age: 11.8 years; 20 boys) and compared with 78 patients treated for a non‐CNS malignancy (mean age: 9.7 years; 41 boys) and norm data. Questionnaires applied were the Sleep Disorder Scale for Children, the Epworth Sleepiness Scale, the Pediatric Quality of Life Inventory, and the Strengths and Difficulties Questionnaire. Sleeping habits and endocrine deficiencies were assessed with a self‐developed questionnaire. Increased somnolence was found in CNS tumour patients compared with those with a non‐CNS malignancy (8.8 ± 2.8 versus 7.5 ± 2.7; P < 0.05). Both patient groups reported more problems (P < 0.01) than the norm with initiating and maintaining sleep. No specific risk factors were identified for a sleep disorder in CNS tumour patients, but their excessive somnolence was correlated with lower fatigue related quality of life (QoL) (r = −0.78, P < 0.001) and worse psychosocial functioning (r = 0.63, P < 0.001). In conclusion, children treated for a CNS tumour have increased somnolence, significantly increasing fatigue and worsening daily functioning. Further investigation should focus on possibilities to improve sleep quality and diminish fatigue.

Growing into disability benefits? Psychosocial course of life of young adults with a chronic somatic disease or disability.

Aim:  A growing number of young adults with somatic diseases/disabilities since childhood apply for disability benefits. The achievement of psychosocial milestones while growing up (course of life) is assumed to be related to job participation. This study assessed the course of life of young adult beneficiaries with somatic limitations compared with peers from the general Dutch population.

Remarkable differences: the course of life of young adults with galactosaemia and PKU

SummaryAlthough the need for insight in factors influencing the quality of life of patients with an inborn error of metabolism is recognized, psychological adjustment of adults with metabolic diseases has not been properly studied. Adult patients with PKU were demonstrated not to differ from healthy controls in terms of their course of life (CoL) and health-related quality of life (HRQoL). However, adults with galactosaemia had a lower HRQoL with significant lower scores on the domains of cognitive and social function. This study investigated the CoL and the social demographical outcomes in these young adults with galactosaemia, and compared them with the general population and with PKU patients. A total of 15 (88%) adult patients with classical galactosaemia participated in this study. Classical galactosaemia patients had a delayed social and psychosexual development compared to their peers from the general population and to PKU patients. Also, they were significantly less frequently married or living together and significantly less frequently employed than the general population. Our study shows a stark contrast between patients with galactosaemia and patients with PKU, although both are diagnosed in the neonatal period and need life-long dietary restrictions. The observed difference is likely due to the long-term somatic complications frequently seen in galactosaemia and thus not due to the burden of a chronic disease necessitating life-long dietary restrictions. 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.