Health-related quality of life (HRQoL) is increasingly recognized as a key outcome in both clinical and research settings in the pediatric population with end-stage renal disease (ESRD). This review ...aims to: (1) summarize the current knowledge on HRQoL and socioprofessional outcomes and (2) provide strategies for incorporation of HRQoL assessment into clinical practice. Studies report that pediatric patients with ESRD have significantly lower HRQoL scores compared with children with other chronic diseases. Patients treated by dialysis are at particularly high risk for impaired HRQoL. Furthermore, patients more often have impaired neurocognitive functioning and lower academic achievement. Important determinants of impaired HRQoL include medical factors (i.e., receiving dialysis, disabling comorbidities, cosmetic side effects, stunted growth), sociodemographic factors (i.e., female gender, non-Western background) and psychosocial factors (i.e., noneffective coping strategies). Contrary to the situation in childhood, adult survivors of pediatric ESRD report a normal mental HRQoL. Despite this subjective feeling of well-being, these patients have on average experienced significantly more difficulties in completing their education, developing intimate relationships, and securing employment. Several medical and psychosocial strategies may potentially improve HRQoL in children with ESRD. Regular assessment of HRQoL and neurocognitive functioning in order to identify areas in which therapies and interventions may be required should be part of standard clinical care.
Knowledge about psychometric properties of the Pediatric Quality of Life Inventory (PedsQL) in the Netherlands is limited and Dutch reference data are lacking. Aim of the current study is to collect ...Dutch reference data of the PedsQL and subsequently assess reliability, socio-demographic within-group differences and construct validity.
In this study the PedsQL was administered to Dutch children aged 5 to 18 years. A socio-demographic questionnaire was completed as well. The sample consisted of three age groups: 5-7 years (parent proxy report), 8-12 years and 13-18 years (child self report). Analysis was performed with SPSS 16.0.2. A reliability analysis was done using Cronbach's alpha coefficient. Socio-demographic within-group differences were assessed by means of an ANOVA with post hoc Bonferroni correction and t-tests. Subsequently, construct validity was determined by t-tests and effect sizes.
For 496 children PedsQL reference data were collected. PedsQL total scores were 84.18 (group 5-7), 82.11 (group 8-12) and 82.24 (group 13-18). Internal consistency coefficients ranged from .53 to .85. Socio-demographic within-group differences demonstrated that, in group 8-12, children of parents born in the Netherlands had significantly lower scores on several PedsQL subscales, compared to children of parents born in another country. With respect to construct validity, healthy children of group 5-7 and 13-18 scored significantly higher than children with a chronic health condition on all subscales, except for emotional functioning. In group 5-7, the PedsQL total score for healthy children was 85.31, whereas the same age group with a chronic health condition scored 78.80. Effect sizes in this group varied from 0.58 to 0.88. With respect to group 13-18, healthy children obtained a PedsQL total score of 83.14 and children suffering from a chronic health condition 77.09. Effect sizes in this group varied from 0.45 to 0.67. No significant differences were found in group 8-12 regarding health.
The Dutch version of the PedsQL has adequate psychometric properties and can be used as a health related quality of life instrument in paediatric research in the Netherlands.
Purpose The aim of this study was to provide Dutch normative data for the Distress Thermometer for Parents (DT-P) and to assess internal consistency and knowngroups validity. Methods A sample of 1421 ...parents (60.7 % mothers), representative of the Dutch population, completed online sociodemographic questionnaire and the DT-P, which includes a thermometer (0 (no distress) to 10 (extreme distress), ≥4 clinically elevated distress) and everyday problems across six problem domains (practical, social, emotional, physical, cognitive, and parenting). Internal consistency was calculated using Cronbach's alphas. Known-groups validity was assessed by comparing parents of a child with a chronic condition (N = 287,20.2 %) with parents of healthy children, using Mann-Whitney U tests and Chi-square tests. Results The DT-P showed acceptable internal consistency (Cronbach's alphas = .52-.89). Parents of a child with a chronic condition more often reported clinically elevated distress than parents of healthy children (53.0 versus 38.2 %, p < .001). Also, on all domains they reported more problems (p = .000-.022). Normative scores for mothers and fathers separately were provided. Conclusion The DT-P distinguishes well between parents of a child with and without a chronic condition. With the current norms available, distress can be evaluated in parents of a child with a chronic condition compared to parents of healthy children in pediatrie clinical practice.
Objective To study posttraumatic stress disorder (PTSD) in parents after unexpected pediatric intensive care unit (PICU) treatment of their child and to identify risk factors for its development. ...Method Parents completed PTSD questionnaires 3 and 9 months (N = 190) after PICU treatment. Risk factors included pretrauma data, medical data, social demographics and posttraumatic stress responses at 3 months. Results In total, 30.3% of parents met criteria for subclinical PTSD and 12.6% for clinical PTSD at 3 months. Clinical PTSD prevalence rates did not change over time. At 9 months, 10.5% of parents still met criteria for PTSD. Number of earlier stressful life events, earlier psychosocial care and posttraumatic stress responses at 3 months predicted persistent subclinical and clinical PTSD. Conclusions PICU admission is a stressful event associated with persistent parental PTSD. Assessment of risk factors can facilitate detection of persistent PTSD for early intervention.
Background
The authors developed a pain monitoring app offering educational information, and real‐time health care professional feedback on clinically significant pain (>4 numeric rating scale ...NRS‐11) for children with cancer to reduce pain at home.
Methods
This monocenter, nonblinded randomized controlled trial enrolled Dutch children (0–18 years old) receiving cancer treatment (≥3 months after diagnosis, ≥2 months treatment remaining). Children were randomly assigned to use the app or receive usual care (two parallel groups). We assessed whether use of the app yielded less clinically significant pain (aim 1) and whether it affected pain severity, duration, interference, pain management strategies, and parental emotional well‐being (aim 2). The app was also evaluated by families (aim 3).
Results
A total of 94 children were randomized to use the app (15 drop‐outs), and 90 were to receive care as usual (11 drop‐outs). The app group (n = 79, mean age: 7.5 5.1 years, 48% girls, 63% hemato‐oncology diagnosis) reported significantly less clinically significant pain compared to usual care (n = 79, mean age: 7.5 5.4 years, 52% girls, 65% hemato‐oncology diagnosis) (odds ratio OR, 0.38; 95% confidence interval CI, 0.198–0.734) (aim 1), as well as significantly lower pain severity (β = –0.27; 95% CI, –0.407 to –0.142). No differences were found for duration, interference, or management strategies. Parents in the app group reported significantly less distress compared to usual care (β = –0.84; 95% CI, –1.61 to –0.03) (aim 2). Families generally evaluated the app positively (aim 3).
Conclusions
Use of the app resulted in less clinically significant pain at home. The exact working mechanisms of the app should be further elucidated.
Use of a pain monitoring app with educational information on pain (management) and real‐time health care professional feedback reduced clinically significant pain in children with cancer at home.
Parenting and providing extensive care to a child with a life-limiting or life-threatening disease while being aware of the future loss of the child are among the most stressful parental experiences. ...Due to technical and medical improvements, children are living longer and are increasingly cared for at home. To align healthcare professionals’ support with the needs of parents, a clear understanding of prominent experiences and main coping strategies of parents caring for a child in need of palliative care is needed. An interpretative qualitative study using thematic analysis was performed. Single or repeated interviews were undertaken with 42 parents of 24 children with malignant or non-malignant diseases receiving palliative care. Prominent reported parental experiences were daily anxiety of child loss, confrontation with loss and related grief, ambiguity towards uncertainty, preservation of a meaningful relationship with their child, tension regarding end-of-life decisions and engagement with professionals. Four closely related coping strategies were identified: suppressing emotions by keeping the loss of their child at bay, seeking support, taking control to arrange optimal childcare and adapting to and accepting the ongoing change(s).
Conclusion
: Parents need healthcare professionals who understand and carefully handle their worries, losses, parent-child relationship and coping strategies.
What is Known:
•
In paediatric palliative care, parents have a daunting task in fulfilling all caregiving tasks while striving for control of their child’s symptoms, a life worth living and a family balance.
What is New:
•
Prominent experiences were: continuous management of anxiety of child loss, feelings of uncertainty, tension with end-of-life decision making and engagement with professionals. Parents experienced unique significance to their child, reinforcing a meaningful parent-child relationship.
•
Relevant coping strategies were: suppressing emotions, seeking support, taking control to arrange optimal care and adapting to the ongoing changes.
•
To provide tailored support, professionals need to understand parents’ perceptions, relationship with their child and coping strategies.
Objective
Fatigue is one of the most prevalent and distressing symptoms reported by survivors of childhood cancer. There is currently a lack of longitudinal studies on cancer-related fatigue, and ...especially on the relationship between the course of fatigue during treatment and fatigue at follow-up. The purpose of the current study was therefore to investigate if the course of fatigue during treatment, treatment intensity, serious adverse events, sex, or age at diagnosis are associated with cancer-related fatigue after treatment.
Methods
Participants were 92 children and adolescents diagnosed with acute lymphoblastic leukemia (mean age at diagnosis was 6.26 years). Fatigue was measured with PedsQL multidimensional fatigue scale proxy reports 5 months after diagnosis, 12 months after diagnosis, 24 months after diagnosis, and at follow-up 12 months after end of treatment. The effect of patient and treatment characteristics on fatigue reported at follow-up was tested through logistic regression analyses.
Results
The course of fatigue during treatment significantly predicted fatigue reported at follow-up for general fatigue (
p
= .038, OR = 9.20), sleep/rest fatigue (
p
= .011, OR = 15.48), and cognitive fatigue (
p
< .001, OR = 10.78). None of the other variables were associated with fatigue at follow-up for any of the subscales.
Conclusions
The findings demonstrate that fatigue reported during treatment can predict fatigue at follow-up. These results stress the need for longitudinal assessments. Healthcare professionals need to be aware that pediatric patients who are fatigued during treatment need to receive additional attention and timely interventions since cancer-related fatigue will not resolve by itself in the first year after end of treatment.
Changes in the prevalence of chronic health conditions in childhood have considerable societal consequences for health care planning and for employment. To obtain valid and reliable estimates of the ...prevalence of chronic health conditions, a clear definition is needed.
To present an overview of all definitions and operationalizations that have been applied to measure the prevalence of chronic health conditions in childhood.
PubMed and the Web of Science were searched for articles published up to December 2006. Also, references were searched by hand for related articles.
Non-English- and non-Dutch-language articles were excluded. Of 7252 articles found, 64 articles that stated a conceptual definition and/or operationalization of chronic health conditions in children (aged 0-18 years) were included.
Data on the (1) definition; (2) operationalization in terms of source of information, method of information retrieval, and study population; and (3) resulting prevalence rate were extracted by 2 independent reviewers.
A large range of definitions were in use, of which 4 were cited by many authors. Various operationalizations of the concepts that were measured were identified. Chronic health conditions in childhood prevalence estimates ranged from 0.22% to 44%, depending on these operationalizations.
The wide variability in reported prevalence rates of chronic health conditions in childhood can be explained by considerable diversity in the concepts and operationalizations used. International consensus about the conceptual definition of chronic health conditions in childhood is needed.
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