Published online October 13, 2008
PEDIATRICS Vol. 122 No. 5 November 2008, pp. e1030-e1038 (doi:10.1542/peds.2008-0582)
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ARTICLE

Hidden Consequences of Success in Pediatrics: Parental Health-Related Quality of Life—Results From the Care Project

Janneke Hatzmann, MSca, Hugo S. A. Heymans, MD, PhDb, Ada Ferrer-i-Carbonell, PhDc, Bernard M. S. van Praag, PhDd and Martha A. Grootenhuis, PhDa

a Psycho Social Department
b Department of Pediatrics, Emma Children's Hospital, Academic Medical Center, University of Amsterdam, Amsterdam, Netherlands
c Catalan Institute for Advanced Research and Institut d'Anàlisi Econòmica, Barcelona, Spain
d University of Amsterdam School of Economics, Schooling, Labor Market and Economic Development (SCHOLAR), Amsterdam Institute for Advanced Labour Studies and Tinbergen Institute, Amsterdam, Netherlands


   ABSTRACT
TOP
 ABSTRACT
METHODS
 RESULTS
 DISCUSSION
 CLINICAL AND FUTURE IMPLICATIONS
 APPENDIX: PROCEDURE AND...
 REFERENCES
 
CONTEXT. The number of parents who care for a chronically ill child is increasing. Because of advances in medical care, parental caring tasks are changing. 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.

OBJECTIVE. Our goal was to determine the health-related quality of life of parents of chronically ill children compared with parents of healthy schoolchildren.

DESIGN, SETTING, AND PARTICIPANTS. A survey of 533 parents of children with chronic conditions (10 diagnosis groups, children aged 1–19 years, diagnosed >1 year ago, living at home) and 443 parents of schoolchildren was conducted between January 2006 and September 2007. Parents were approached through Emma Children's Hospital (which has a tertiary referral and a regional function) and through parent associations. The comparison group included parents of healthy schoolchildren. Health-related quality of life was assessed with the TNO-AZL Questionnaire for Adult's Health Related Quality of Life.

MAIN OUTCOME MEASURE. Health-related quality of life measures gross and fine motor function, cognitive functioning, sleep, pain, social functioning, daily activities, sexuality, vitality, positive and depressive emotions, and aggressiveness. The health-related quality of life of the study group was compared with that of the comparison group, and effect sizes were estimated. The percentages of parents at risk for a low health-related quality of life were compared with the 25th percentile scores of the comparison group.

RESULTS. Parents of chronically ill children had a significantly lower health-related quality of life. Subgroup analysis showed lower health-related quality of life on sleep, social functioning, daily activities, vitality, positive emotions, and depressive emotions in disease-specific groups. On average, 45% of the parents were at risk for health-related quality-of-life impairment.

CONCLUSIONS. Parents of chronically ill children report a seriously lower health-related quality of life, which should receive attention and supportive care if necessary. A family-centered approach in pediatrics is recommended.

Key Words: caregiver • health-related quality of life • chronic condition childhood

Abbreviations: HRQoL—health-related quality of life • TAAQoL—TNO-AZL Questionnaire for Adult's Health Related Quality of Life • SES—socioeconomic status

In the Netherlands, at least 14% (500 000 children) of all children grow up with a chronic illness.1 Recent data from the United States show that at least 7% (5 million children) of all children have a limitation of activity because of a health condition, with the number of chronically ill children being even higher.2 The number of children living with a chronic illness will likely further increase because of medical advancements and genetic, social, and behavioral changes.2 For parents, learning that their child has a chronic and potentially life-threatening disease is a very stressful and potentially traumatic event.3,4 Besides emotional impact, having a chronically ill child also influences family and social life, as parents provide most of the daily care for these children.5 This daily care involves management of the illness, which can be complex and is increasingly transferred from the hospital to the home (eg, home dialysis, intravenous alimentation). The daily care also includes instructing others (eg, teacher), combining care with family life, and managing the consequences of the illness on siblings.6–9 The caregiving role, combined with family life, an occupational career, and a social life, can be very stressful for parents.10–13 Parents report a lower quality of life and experience physical and emotional strain.14–18 Parental physical, emotional, and social health also influences the health and well-being of their children.4,19 This presents a conflicting situation, because as it becomes more difficult for parents to fulfill all tasks, their role in providing care becomes increasingly important for the health and well-being of their children.

In the literature, parental quality of life has been described in terms of emotional and physical health. However, we know that the daily life of parents of chronically ill children may also change; therefore, we were interested in a comprehensive view of health-related quality of life (HRQoL) that also reflects these aspects of life.

We compared the HRQoL of parents of chronically ill children with a comparison group to assess possible differences in the specific aspects of HRQoL and to determine whether parents of chronically ill children are at risk for HRQoL impairment. We expected the HRQoL of parents of chronically ill children to be lower than that of a comparison group. This detailed information about the HRQoL of parents will provide insight into specific problem areas and indicate which parents are at risk for an impaired HRQoL.


   METHODS
TOP
 ABSTRACT
 METHODS
RESULTS
 DISCUSSION
 CLINICAL AND FUTURE IMPLICATIONS
 APPENDIX: PROCEDURE AND...
 REFERENCES
 
Design
This study was conducted within the framework of a large retrospective study (the Care Project) examining HRQoL and social and financial consequences of parents caring for a chronically ill child. Participants were recruited between January 2006 and September 2007 in Emma Children's Hospital and through patient organizations. A self-report questionnaire was developed for this study, including an already existing HRQoL questionnaire. The Care questionnaire was also available in English, translated by a professional translator. The study was approved by the medical ethical committee.

Participants
Parents of chronically ill children participated in this study. Chronic illness was defined according to Mokkink et al1,20 using the following criteria: the disease occurs in children aged 0 to 18 years, the diagnosis is based on medical scientific knowledge, the disease is not (yet) curable and exists for at least 3 months, or will probably endure longer, or at least 3 disease episodes have occurred the last year. According to the definition, we selected 10 different chronic diseases: asthma, diabetes, Down syndrome, Duchenne muscular dystrophy, end-stage renal disease, metabolic diseases, profound multiple handicaps, sickle cell disease, spina bifida, and survivors of a brain tumor. Inclusion criteria were: 1) the chronically ill children were aged between 1 to 19 years old, 2) diagnosed >1 year before inclusion in the study, 3) lived at home, and 4) the parents were able to fill out the questionnaire in Dutch or English.

Parents in the comparison group were eligible if their child 1) was not chronically ill, 2) was aged between 1 and 19 years old, 3) lived at home, and 4) the parents were able to fill out the questionnaire in Dutch or English.

Procedure
Parents received an introductory letter explaining the aim of the study and asking for their participation. The letter was accompanied by the questionnaire, an informed consent form, and a stamped self-addressed envelope. Each family received 1 questionnaire, which was completed at home. The comparison group consisted of parents of healthy children from 2 elementary schools and 1 high school located within 50 km of our hospital. The schoolchildren took an envelope with the information and the questionnaire home for their parents. The specific procedure for each disease group is described in the Appendix.

Measurement
Demographic and HRQoL data were taken from the Care questionnaire. HRQoL was assessed by using the TNO-AZL Questionnaire for Adult's Health Related Quality of Life (TAAQoL).21 The questionnaire measures health status problems weighted by the impact of problems on well-being on 12 multiitem scales: gross and fine motor functioning, cognitive functioning, sleep, pain, social functioning, daily activities, sexuality, vitality, positive emotions, depressive emotions, and aggressiveness.

Each item consists of 2 parts: the first part assesses the prevalence of a health problem or limitation in the past month, and the second part evaluates the emotional response to the health problem or limitation. Answers were scored on 4-point scales. A single score is attributed to each combination of an item assessing the prevalence of a problem or limitation and the corresponding emotional response. The scales for vitality, positive emotions, depressive emotions, and aggressiveness only assess the occurrence of the feelings in the past month. Higher scores indicate a better HRQoL. The Cronbach's {alpha} values in the present study were mainly satisfactory to good, ranging from .60 to .96, with the exception of fine motor function in the individuals in the Duchenne and Down syndrome group, sexuality in the multiple handicap group, and aggressiveness in those in the Duchenne, end-stage renal disease, and spina bifida groups. These scales were excluded from analysis. The psychometric properties, validity, and reliability of the TAAQoL were satisfactory.21

Statistical Analysis
First, scales were constructed and missing data were imputed based on the guidelines of the TAAQoL. In calculation of the scale scores, 1 missing combined-item score was allowed for. The missing score was replaced by the mean value of the nonmissing item scores. Demographic data of the study and comparison group were compared by using {chi}2 tests for categorical data and t tests for continuous data. The HRQoL of the total group of parents of chronically ill children was compared with the HRQoL of the comparison group by univariate analysis of variance for each scale, adjusted for parental age and education. Furthermore, a univariate analysis of variance was performed for each disease group, compared with the comparison group, with age and educational level as covariates. To adjust for multiple testing, we used a Bonferroni correction and adjusted the {alpha} to .004 (.05/12). Effect sizes (d) were calculated by dividing the difference in mean scores between disease groups and the comparison group by the SD of the comparison group. We considered effect sizes up to 0.2 to be small, ~0.5 to be moderate, and ~0.8 to be large.22 The distribution of gender between the disease population and the comparison group was equal, we considered mothers and fathers as 1 group for analysis.

To further explore the scales on which most differences were found and effect sizes were moderate to high, we created a distinction between parents "at risk" and those "not at risk" for an impaired HRQoL, based on percentile norms of the healthy population.23 A parent in the comparison group who scores below the value of the 25th percentile is placed in the quarter of the most impaired population. We compared the percentage of parents in the disease samples scoring below the value of the 25th percentile of the norm population using binomial tests (P < .008; .05/6). We used SPSS 12.0 (SPSS Inc, Chicago, IL).


   RESULTS
TOP
 ABSTRACT
 METHODS
 RESULTS
DISCUSSION
 CLINICAL AND FUTURE IMPLICATIONS
 APPENDIX: PROCEDURE AND...
 REFERENCES
 
Participants
In total 533 of the 580 participating parents filled out the quality of life questionnaire. Overall, the groups had similar demographics (P < .1) except for educational level, with a larger proportion of highly educated parents in the comparison group (Table 1). Gender distribution in parents in the Duchenne, sickle cell disease, and brain tumor survivor group statistically differed from the comparison group, with more women in the sickle cell and brain tumor group, and more men in the Duchenne group. Furthermore, parents of children with sickle cell disease and end-stage renal disease were more often single and had a lower educational level than the comparison group. Parents of children with metabolic disease also had a lower educational level. Parents of children with Down syndrome had more children than the comparison group. Furthermore, the age of parents of children with asthma, sickle cell disease, and metabolic diseases was significantly lower than that of the comparison group.


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  		TABLE 1 Demographics

 
Differences in HRQoL Between Parents of Healthy Children and Parents of Chronically Ill Children
The total group of parents of chronically ill children had significantly lower scores on all subscales (P < .004) except fine motor functioning (Table 2). On the scales for cognitive functioning, sleep, social functioning, and positive emotions, significant differences were small to moderate as effect sizes ranged from 0.32 to 0.76. On the scales for daily activities, vitality, and depressive emotions, significant differences were moderate to large, with effect sizes from 0.47 to 1.16. On the scales for gross motor function, pain, sexuality, and aggressiveness, significant differences were small to moderate with effect sizes from 0.19 to 0.69.


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  		TABLE 2 Mean HRQoL Scale Scores, 95% Confidence Intervals, and Effect Sizes of Caregivers of Chronically Ill Children and the Comparison Group

 
Subgroup analysis revealed that the most salient differences occurred in the scales for sleep, daily activities, social functioning, vitality, positive emotions, and depressive emotions. Parents of children with metabolic diseases had a significantly lower score on all scales except fine motor function. These differences were all moderate to large, with effect sizes ranging from 0.44 to 1.00, except for gross motor function and aggressiveness. Furthermore, parents of children with asthma, Duchenne, and sickle cell disease had significantly lower scores on a relatively large number of scales. Parents of children with brain tumors, diabetes, end-stage renal disease, and spina bifida had significantly lower scores on a small number of scales. However, despite the few differences found in the end-stage renal disease group, the majority of effect sizes were moderate to large.

Proportion of Parents of Chronically Ill Children at Risk for HRQoL Impairment
Figure 1 shows the percentages of parents at risk for HRQoL impairment for the scales for sleep, social functioning, daily activities, vitality, and positive and depressive emotions. The total group of parents of chronically ill children showed significantly higher percentages, ranging from 35% to 54%, than the comparison group. In the disease groups, parents of children with asthma, metabolic disease, and sickle cell disease had significantly higher percentages than the comparison group on a majority of scales and were, therefore, considered at risk for an impaired HRQoL.


Figure 1
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  		FIGURE 1 HRQoL impairment based on percentages of parents scoring below the 25th percentile of the comparison group. a P < .008 for parents in disease group in comparison with parents of healthy children (binomial test). The black line equals the 25% of parents in the comparison group below the 25th percentile. Because of distribution of scale scores, percentiles approach 25th, ranging from the 18th to 31st percentile. ESRD indicates end-stage renal disease.

 

   DISCUSSION
TOP
 ABSTRACT
 METHODS
 RESULTS
 DISCUSSION
CLINICAL AND FUTURE IMPLICATIONS
 APPENDIX: PROCEDURE AND...
 REFERENCES
 
The aim of the present study was to identify differences in HRQoL between parents of chronically ill children and parents of healthy children. The results show that parents of chronically ill children have a lower HRQoL than parents of healthy children. To add clinical meaning to these differences, we divided parents into 2 groups, 1 at risk for an impaired HRQoL and 1 not at risk. This division shows that parents of chronically ill children have a seriously low HRQoL almost twice as often as parents of healthy children and are at risk for HRQoL impairment. These serious problems related to many aspects of daily life underline the importance of parental support in clinical practice.

More specifically, parents of chronically ill children in disease specific groups report a significantly lower HRQoL because of problems with 3 clusters: social and daily functioning, vitality, and sleep, and having less positive and more negative emotions. Furthermore, 40% to 50% of these parents are at risk for HRQoL impairment. Although not all differences are statistically significant, they indicate a trend toward HRQoL impairment across disease groups. Most problems are reported with social functioning and depressive emotions. Our results are in line with other studies describing more problems with depression and social and emotional functioning in parents of chronically ill children.10,14–17 These studies also found impaired physical functioning, which is not fully confirmed by our study, because little problems with pain or gross and fine motor function were reported. Nevertheless, parents reported that they were less vital and had difficulties sleeping. It should be noted that despite the above-mentioned difficulties, there are also parents who seem to cope well with their child's disease. Both positive and negative determinants of HRQoL need to be estimated in future research.

The definition of parents being at risk for an impaired HRQoL was based on the value of the 25th percentile of all scales of the comparison group. There is no gold standard for a good or bad HRQoL; however, this definition is considered to be an appropriate way to differentiate between individuals with higher scale scores and individuals with lower scale scores.25

A salient result is that parents of children with metabolic disease reported a low HRQoL on almost all subscales. This might be explained by the hereditary and progressive nature of these diseases (lysosomal storage diseases, organic acidurias, mitochondrial respiratory chain defects), in addition to the uncertain health status of some of the children, which leads to growing strain and increasing caregiver burden over time.7,24

Parents of children with sickle cell disease also report a significantly lower HRQoL on most subscales. This could also be explained by their demographics, which differ most from the comparison group; they are more often single parents, have a lower educational level, and are younger than the comparison group. In addition, parents of children with sickle cell disease in the Netherlands often are from migrant families, which generally are known to have a lower socioeconomic status (SES).25To account for SES, we have previously compared this group of parents to a SES-matched control group,26 which showed that parents of children with sickle cell disease have a lower HRQoL on the scales for daily activities, vitality, and depressive emotions. This is in line with our results.

A third group showing significantly lower HRQoL included parents of children with asthma. The literature shows ambiguous results, with parenting stress being found in 1 study27 and good quality of life in another, except for a small group describing a negative emotional effect.7,28 A possible explanation for our findings could be that we included a relatively severe asthma group, as the hospital serves as a secondary care center for parts of the city of Amsterdam and is a tertiary referral center for the central and western part of the Netherlands.

Parents of children with profound complex handicaps do not report a significantly lower HRQoL. Nevertheless, the small sample size and the low response rate hamper the interpretation of the results, and future research is needed.

Some limitations of this study should be addressed. First, although we describe 10 different groups of parents of chronically ill children, we cannot easily generalize the results to all parents of chronically ill children, as >280 International Classification of Diseases, 10th Revision diagnoses meet the criteria of chronic childhood disease.1 However, the rather consistent outcome of this study indicates an overall burden for parents across disease groups. Second, respondents in this study were mainly mothers; a more thorough exploration of the HRQoL of fathers is desirable. Third, parents in this study had a higher educational level than the average Dutch population (lower: 33%; intermediate: 41%; higher: 25%)29; however, we have taken these differences into account when comparing the data. The percentage of parents born in the Netherlands is also higher than in the average Dutch population. Our expectation is that participants in this study had a better SES than is average in the Netherlands. A lower individual and neighborhood level SES is associated with worse health status.30 Therefore, in our study we have probably demonstrated the HRQoL of parents with a relatively good SES and health status and have presumably given an underestimation of the HRQoL impairment. A fourth limitation is the average response rate of 54% in the disease groups. We have little information regarding nonresponders, although the higher educational level in comparison to the Dutch average indicates a selection bias toward parents with higher educational levels. Perhaps these parents more easily respond to a questionnaire. At last, we must note that several sample sizes were small; however, these data do support the hypothesis of more parents being at risk for HRQoL impairment in these groups.


   CLINICAL AND FUTURE IMPLICATIONS
TOP
 ABSTRACT
 METHODS
 RESULTS
 DISCUSSION
 CLINICAL AND FUTURE IMPLICATIONS
APPENDIX: PROCEDURE AND...
 REFERENCES
 
Parents in our study group report a seriously lower HRQoL than the comparison group, and on average, 45% of parents are at risk for HRQoL impairment. Because the emphasis on informal care is expected to continue to grow, the number of parents caring for their children will consequently increase. Besides the fact that this is a stressful situation for parents themselves, it can also have negative consequences for the chronically ill child and their siblings.31 Children depend on their parents, and chronically ill children probably even more so than healthy children. Parental mental functioning is known to influence their children's health32,33 and adjustment,34 both for chronically ill and healthy children. Because parents of chronically ill children report higher stress levels than parents of healthy children, chronically ill children and their siblings are at higher risk for additional health and adjustment problems.

In our opinion, pediatricians as well as general physicians should be aware of the impact of caring for a chronically ill child on parental HRQoL and of the multitude of problems parents report. Parental functioning should be part of clinical practice in pediatrics. Moreover, attention should be paid to parental functioning, as parents’ resilience may be impaired because of problems sleeping and problems with vitality and depressive emotions. Family oriented programs that have been developed in, for example, psycho-oncology35 should be introduced in other disease populations as well. Professionals working with parents of chronically ill children should pay attention to the difficulties parents experience and provide supportive care if necessary.


   APPENDIX: PROCEDURE AND INCLUSION OF RESPONDENTS
TOP
 ABSTRACT
 METHODS
 RESULTS
 DISCUSSION
 CLINICAL AND FUTURE IMPLICATIONS
 APPENDIX: PROCEDURE AND...
REFERENCES
 
Asthma
All 201 parents of children diagnosed with asthma, who had visited the pediatric pulmonology outpatient clinic of Emma Children's Hospital in 2005, were approached by mail. A reminder letter was sent to nonresponders to increase response. A total of 99 questionnaires were returned, of which 97 (48%) could be used in this study. The families who did not participate did not differ from participating families with respect to age of the child with asthma (t test, P < .1). The gender of children of nonparticipants did differ from that of participants, as in the nonparticipants group there were relatively more boys with asthma and less girls, compared with the participants group (binomial test: P < .1).

Survivors of a Brain Tumor
All parents of children who had completed treatment for a brain tumor at Emma Children's Hospital at least 1 year ago (n = 63) were invited to participate in the Care study by mail. Nonresponders were contacted by telephone, and a reminder letter was sent to increase response. Forty-three parents (68%) participated. The families who did not participate did not differ from the participating families with respect to age (t test, P < .1) or gender (binomial test: P < .1) of the children.

Diabetes
The diabetes group includes parents of all diabetes patients monitored in Emma Children's Hospital. A total of 56 families were eligible for this study. Nonresponders were contacted by telephone to increase participation. Twenty-four (43%) questionnaires were returned. The families who did not participate did not differ from the participating families with respect to age (t test: P < .1) or gender (binomial test: P < .1) of the children with diabetes.

Down Syndrome
A cohort of Dutch children born with Down syndrome between 1999 and 2001 was included. This cohort was studied and described by Trotsenburg et al.36 Initially, this cohort consisted of 196 children. Of this cohort, 19 were lost to follow-up because of death of the children and because of unknown addresses. For the Care Project, we approached 177 parents. A reminder letter was send to nonresponders to increase participation. The final sample included 103 (58%) returned questionnaires. Nonparticipants did not differ from participants with respect to age or gender distribution of the children with Down syndrome (t test, binomial test: P < .1).

Duchenne Muscular Dystrophy
Parents of children with Duchenne were all members of the Dutch department of the Duchenne Parent Project. All parents (n = 125) were invited to participate by a letter from the president of the Duchenne Parent Project. The 76 (61%) parents who filled out a reply form received a questionnaire. A reminder letter was sent to nonresponders to increase participation. Sixty-one (49%) questionnaires were returned. Nonparticipants did not differ from respondents with respect to gender or age (binomial test, t test: P < .1).

End-Stage Renal Disease
The end-stage renal disease group included parents of all patients with end-stage renal disease under treatment at Emma Children's Hospital. A total of 38 families were eligible for this study. A reminder letter was sent to all parents after 4 weeks to increase response. Twenty-seven (71%) parents participated. The children of participants were either in dialysis (n = 13) or transplanted (n = 14). Nonparticipants did not differ from participants with respect to age or gender distribution of the children with end-stage renal disease (t test, binomial test: P < .1).

Metabolic Diseases
The metabolic group consisted of members of the Dutch patient organization (Volwassenen en Kinderen met Stofwisselingsziekten, VKS, n = 202) and parents of patients in Emma Children's Hospital (n = 32). A reminder was placed on the Web site of the VKS to increase participation. In total, 121 (52%) questionnaires were returned, 107 (53%) through the VKS and 14 (44%) from parents of patients from Emma Children's Hospital. Three diagnosis groups were selected: lysosomal storage diseases (n = 37 [31%]); organic acidurias (n = 18 [15%]); and mitochondrial respiratory chain defects (n = 54 [45%]). For 12 respondents (10%), the diagnosis group was not retrieved. Nonparticipants did not differ from participants with respect to age or gender distribution of the children with metabolic disease (t test, binomial test: P < .1).

Profound Multiple Disabilities
The parents of children with profound multiple disabilities were invited through the specialized day care center that their children were attending. This day care center works closely with Emma Children's hospital. All 56 eligible families received a questionnaire. A reminder letter was sent to increase participation, which mentioned the possibility of getting help with filling out the questionnaire, as for many parents, neither Dutch nor English was their native language. In total, 21 (38%) parents participated. Information on nonparticipating families is not available.

Sickle Cell Disease
This group consists of parents of children with sickle cell disease who visited the outpatient clinic of Emma Children's Hospital at least once during the previous year. All eligible parents (n = 99) were invited to participate by mail. Parents who had not returned the questionnaire after 2 weeks were reminded by telephone or at their visit to the outpatient clinic.26 A total of 62 (63%) questionnaires were returned. Nonparticipants did not differ from participants with respect to age (t test, P < .1), but they did differ in gender distribution of the children with sickle cell disease, with fewer girls in the nonparticipating group (binomial test: P < .1).

Spina Bifida
This group included parents of all spina bifida patients under treatment at Emma Children's Hospital. A total of 57 families were eligible for this study. Nonresponders were contacted by telephone and a reminder letter to increase response. Twenty-one (37%) parents participated. Nonparticipants did not differ from participants with respect to age or gender distribution of the children with spina bifida (t test, binomial test: P < .1).

Comparison Group
For the reference group, 2 elementary schools and 1 high school participated. The schools are located within 50 kilometers form Emma Children's Hospital. Of the elementary schools, all parents (n = 560) received a letter explaining why the study was being conducted along with the questionnaire and a self-addressed envelope. A total of 195 (35%) questionnaires were returned. Information on nonparticipants is not available. Further, a SES-matched control group (n = 34) for caregivers of children with Sickle cell disease was added.26 For the high school, we followed the same procedure as for the elementary schools. Half of the high school students (n = 800) were given an envelope to take home for their parents. The final high school sample consisted of 277 (35%) questionnaires. Sixty-three parents had a chronically ill child and were excluded from analysis. In total, the comparison group consisted of 443 parents. Information on nonparticipants was not available.


   ACKNOWLEDGMENTS
 
This work was supported by the Dutch Ministry of Social Affairs and Employment.

We thank M. Kars, MSc (Julius Centre UMCU) for her contribution to development of the Care questionnaire. Data collection was made possible by the cooperation of E. Vroom (Duchenne Parent Project) and H. Meutgeert, MSc (VKS [Volwassenen, Kinderen en Stofwisselingsziekten]) and by cooperation of the following pediatricians, nurses, psychologists, and students from Emma Children's Hospital: Pediatric Metabolic Diseases: F. A. Wijburg, MD, PhD, and A. M. Bosch, MD, PhD; Pediatric Pulmonology: W. M. C. van Aalderen, MD, PhD, J. C. van Nierop, MD, PhD, A. B. Sprikkelman, MD, PhD, and N. Boluyt, MD, PhD; Pediatric Oncology: E. J. Aukema, MSc, A. Y. N. Schouten-van Meeteren, MD, PhD, and H. Karst; Pediatric Endocrinology: A. S. P. van Trotsenburg, MD, PhD, and J. Hermsen; Pediatric Nephrology: J. W. Groothoff, MD, PhD, and C. M. Kuin; Pediatric Hematology: X. W. van den Tweel, MD, E. Ensink, and C. J. Fijnvandraat, MD, PhD; Omega (day care center for children with profound complex handicaps): M. Nieuwenhuijse, M. Dorssers, and E. van Bremen; pediatric nursing wards: M. J. Bollé, J. M. Affourtit, R. P. Kramer, A. R. van der Jagt, and L. Naeije (student); and Revalidation: A. Meester-Delver, MD, PhD. Data collection for the comparison group was made possible by L. Brouwers, MSc, I. Smid, S. Koorn (Meridiaan College Amersfoort), N. Markuszower (IMC Weekendschool), A. van Mansfeld (Primary School De Krijtmolen Amsterdam), and J. van Seumeren (Primary School De Calsschool Naarden).


   FOOTNOTES
 
Accepted Jul 17, 2008.

Address correspondence to Janneke Hatzmann, MSc, Emma Children's Hospital, AMC, Psycho Social Department, Room G8-224, Meibergdreef 9, 1105 AZ Amsterdam, Netherlands. E-mail: j.hatzmann{at}amc.uva.nl

The authors have indicated they have no financial relationships relevant to this article to disclose.

Mrs Grootenhuis had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of data analysis; Ms Hatzmann, Drs Ferrer-i-Carbonell, van Praag, Heymans, and Mrs Grootenhuis were responsible for study concept and design; Ms Hatzmann was responsible for acquisition of data, and Ms Hatzmann, Mrs Grootenhuis, and Dr Heymans provided analysis and interpretation of data; Ms Hatzmann and Mrs Grootenhuis drafted the manuscript; Ms Hatzmann, Drs Ferrer-i-Carbonell, van Praag, Heymans, and Mrs Grootenhuis provided critical revision of the manuscript for important intellectual content; Mrs Grootenhuis and Dr Heymans obtained funding; and Mrs Grootenhuis, Heymans, and van Praag provided study supervision.


What's Known on This Subject

In the last decades, the number of chronically ill children growing up into adulthood has increased. Parents provide most of the care for their chronically ill children. These parents are known with higher stress levels, a lower quality of life and more physical strain than parents of healthy children.

 

What This Study Adds

This study provides an estimation is provided of parents at risk for an impaired HRQoL.

 


   REFERENCES
TOP
 ABSTRACT
 METHODS
 RESULTS
 DISCUSSION
 CLINICAL AND FUTURE IMPLICATIONS
 APPENDIX: PROCEDURE AND...
 REFERENCES
 

  1. Mokkink LB, van der Lee JH, Grootenhuis MA, Offringa M., van Praag BMS, Heymans HSA. Extent and Consequences of Chronic Conditions in Children [in Dutch]. Amsterdam, Netherlands: Emma Children's Hospital, AMC; 2006
  2. Perrin JM, Bloom SR, Gortmaker SL. The increase of childhood chronic conditions in the United States. JAMA. 2007;297 (24):2755 –2759[Free Full Text]
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PEDIATRICS (ISSN 1098-4275). ©2008 by the American Academy of Pediatrics

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