Esther E. Hartman

Quality of life and disease-specific functioning of patients with anorectal malformations or Hirschsprung's disease: a review

The objective of this review was to examine disease-specific functioning (ie, faecal functioning and disease-related psychosocial problems) and quality of life (QoL)in patients with anorectal malformations (ARMs) or Hirschsprungs disease across different developmental stages. A search on PubMed yielded 22 eligible studies which were analysed. Patients with ARM or Hirschsprungs disease report slightly more QoL problems than comparison groups. As compared with adolescents, children reported better QoL but worse disease-specific functioning. Relationships between disease-specific functioning and QoL remain unclear. Therefore, to disentangle the complex relationship between the faecal functioning of these patients and their QoL through childhood, adolescence and adulthood, longitudinal studies should examine disease-specific functioning with validated QoL questionnaires that include age-specific versions.

Quality of life of children with type 1 diabetes: a systematic review

INTRODUCTION Children with type 1 diabetes mellitus (T1DM) have to deal with a complex and demanding daily treatment regime which can have a negative impact on the quality of life (QoL) of these patients. The objective of the present study is to review studies that have compared generic quality of life of children and adolescents with T1DM with that of healthy peers. In addition, we will examine whether QoL differs between boys and girls, and across different developmental stages. METHODS A systematic literature search using PubMed was conducted for the years 2000 through May 2012. 17 studies were eligible for the current review. Effect sizes were computed to estimate the effects of having T1DM on QoL in children and adolescents. RESULTS Although individual studies reported small to moderate effect sizes on the distinct QoL-domains, the weighted effect sizes across all studies indicated no differences in QoL-domains between children and adolescents with T1DM and healthy controls. However, disease-specific problems were certainly present. Girls with T1DM reported lower generic and disease-specific QoL than boys with T1DM. Relationships between age and generic or disease-specific QoL remained unclear. CONCLUSIONS Although children and adolescents with T1DM have to live with a demanding treatment regime, overall results revealed that their generic QoL is not impaired compared to healthy peers. However, disease-specific QoL problems, including a negative impact of diabetes on daily functioning, and diabetes-related worries were certainly present. Longitudinal research is needed in order to provide tailored care for children of all ages with T1DM.

Paediatric parenting stress in fathers and mothers of young children with Type 1 diabetes: a longitudinal study

To compare levels of paediatric parenting stress in the fathers and mothers of young children with Type 1 diabetes and study the variation in this stress over time.

Quality of the parent-child interaction in young children with type 1 diabetes mellitus: study protocol

BackgroundIn young children with type 1 diabetes mellitus (T1DM) parents have full responsibility for the diabetes-management of their child (e.g. blood glucose monitoring, and administering insulin). Behavioral tasks in childhood, such as developing autonomy, and oppositional behavior (e.g. refusing food) may interfere with the diabetes-management to achieve an optimal blood glucose control. Furthermore, higher blood glucose levels are related to more behavioral problems. So parents might need to negotiate with their child on the diabetes-management to avoid this direct negative effect. This interference, the negotiations, and the parents responsibility for diabetes may negatively affect the quality of parent-child interaction. Nevertheless, there is little knowledge about the quality of interaction between parents and young children with T1DM, and the possible impact this may have on glycemic control and psychosocial functioning of the child. While widely used global parent-child interaction observational methods are available, there is a need for an observational tool specifically tailored to the interaction patterns of parents and children with T1DM. The main aim of this study is to construct a disease-specific observational method to assess diabetes-specific parent-child interaction. Additional aim is to explore whether the quality of parent-child interactions is associated with the glycemic control, and psychosocial functioning (resilience, behavioral problems, and quality of life).Methods/DesignFirst, we will examine which situations are most suitable for observing diabetes-specific interactions. Then, these situations will be video-taped in a pilot study (N = 15). Observed behaviors are described into rating scales, with each scale describing characteristics of parent-child interactional behaviors. Next, we apply the observational tool on a larger scale for further evaluation of the instrument (N = 120). The parents are asked twice (with two years in between) to fill out questionnaires about psychosocial functioning of their child with T1DM. Furthermore, glycemic control (HbA1c) will be obtained from their medical records.DiscussionA disease-specific observational tool will enable the detailed assessment of the quality of diabetes-specific parent-child interactions. The availability of such a tool will facilitate future (intervention) studies that will yield more knowledge about impact of parent-child interactions on psychosocial functioning, and glycemic control of children with T1DM.

The Association of Mindful Parenting with Glycemic Control and Quality of Life in Adolescents with Type 1 Diabetes: Results from Diabetes MILES—The Netherlands

The objective of this study was to examine associations between the mindful parenting style of parents of adolescents (aged 12–18) with type 1 diabetes mellitus (T1DM), and the glycaemic control and quality of life (QoL) of the adolescents. Chronic health conditions, such as T1DM, that require demanding treatment regimens, can negatively impact adolescents’ quality of life. Therefore, it is important to determine whether mindful parenting may have a positive impact in these adolescents. Age, sex and duration of T1DM were examined as potential moderators. Parents (N = 215) reported on their own mindful parenting style (IM-P-NL) and the adolescents’ glycaemic control. Parents and the adolescents with T1DM (N = 129) both reported on adolescents’ generic and diabetes-specific QoL (PedsQL™). The results showed that a more mindful parenting style was associated with more optimal hemoglobin A1c (HbA1c) values for boys. For girls, a more mindful parenting style was associated with not having been hospitalized for ketoacidosis. For both boys and girls, a more mindful parenting style was associated with better generic and diabetes-specific proxy-reported QoL. In conclusion, mindful parenting style may be a factor in helping adolescents manage their T1DM. Mindful parenting intervention studies for parents of adolescents with T1DM are needed to examine the effects on adolescents’ glycaemic control and their quality of life.

Qualitative observation instrument to measure the quality of parent-child interactions in young children with type 1 diabetes mellitus.

BackgroundIn young children with type 1 diabetes mellitus (T1DM), parents have complete responsibility for the diabetes-management. In toddlers and (pre)schoolers, the tasks needed to achieve optimal blood glucose control may interfere with normal developmental processes and could negatively affect the quality of parent–child interaction. Several observational instruments are available to measure the quality of the parent–child interaction. However, no observational instrument for diabetes-specific situations is available. Therefore, the aim of the present study was to develop a qualitative observation instrument, to be able to assess parent–child interaction during diabetes-specific situations.MethodsFirst, in a pilot study (n = 15), the observation instrument was developed in four steps: (a) defining relevant diabetes-specific situations; (b) videotaping these situations; (c) describing all behaviors in a qualitative observation instrument; (d) evaluating usability and reliability. Next, we examined preliminary validity (total n = 77) by testing hypotheses about correlations between the observation instrument for diabetes-specific situations, a generic observation instrument and a behavioral questionnaire.ResultsThe observation instrument to assess parent–child interaction during diabetes-specific situations, which consists of ten domains: “emotional involvement”, “limit setting”, “respect for autonomy”, “quality of instruction”, “negative behavior”, “avoidance”, “cooperative behavior”, “child’s response to injection”, “emphasis on diabetes”, and “mealtime structure”, was developed for use during a mealtime situation (including glucose monitoring and insulin administration).ConclusionsThe present study showed encouraging indications for the usability and inter-rater reliability (weighted kappa was 0.73) of the qualitative observation instrument. Furthermore, promising indications for the preliminary validity of the observation instrument for diabetes-specific situations were found (r ranged between |.24| and |.45| for significant correlations and between |.10| and |.23| for non-significant trends). This observation instrument could be used in future research to (a) test whether parent–child interactions are associated with outcomes (like HbA1c levels and psychosocial functioning), and (b) evaluate interventions, aimed at optimizing the quality of parent–child interactions in families with a young child with T1DM.

The pregnancy obsession-compulsion-personality disorder symptom checklist

Background: Up until now, very little research has been undertaken on the possible role of personality traits, such as perfectionism and obsessive compulsive personality disorder (OCPD), on pregnancy distress. This is possibly due to the fact that no appropriate instruments are available for use during pregnancy. The current study was undertaken to develop self-rating instruments for assessing symptoms of OCPD (including perfectionism) during gestation, and to evaluate the relationship between high scores on these scales and (recurrent) depression. Method: In a large unselected sample of 1095 pregnant women, the Clinical Perfectionism Scale was adapted and modified to fit into a 15-item perfectionism scale. At the same time, ten questions taken from the SCID OCPD structural interview were modified to fit into a separate self-rating scale. The sample was randomly split into two equal sub-samples: Group I was used for reliability and Explorative Factor Analysis (EFA), and Group II for Confirmative Factor Analysis (CFA). The Edinburgh Depression Scale (EDS), completed at 12, 22 and 32 weeks’ gestation was used to assess concurrent and discriminant validity. Results: A seven-item perfectionism (Eigenvalue: 3.6, 52% explained variance) and seven-item OCPD (Eigenvalue: 3, 40% explained variance) symptom check list retained good psychometric properties: Cronbach’s alpha of 0.85 and 0.78, respectively, and good CFA model fit: a CFI of 0.96, NFI of 0.95, TLI of 0.97, and RMSEA of 0.05, with a lower limit of 0.04; and CFI of 0.97, NFI of 0.97, TLI of 0.98, and RMSEA of 0.05 with a lower limit of 0.03, respectively. Both scales correlated significantly with EDS scores at different trimesters (r: 0.32-0.43). Significantly more often, women with high scores on these scales (defined as a score of >1 SD>mean) reported single and recurrent episodes of depression during gestation and a previous history of depression earlier in life. Conclusion: Self-rating scales that assess OCPD trait symptoms are able to detect women at risk for (recurrent) depression during pregnancy.

Predicting sexual problems in young adults with an anorectal malformation or Hirschsprung disease

AIM The aim of this study was to examine the prevalence of sexual dysfunction and distress and to assess whether sexual functioning could be predicted by psychosocial factors in childhood and adolescence in patients with an anorectal malformation or Hirschsprung disease. MATERIAL AND METHODS In 1998 patients completed a psychosocial questionnaire: The Self-Perception profile. To assess the prevalence of sexual distress and sexual functioning in adulthood (2015) the Female Sexual Function Index (FSFI), The Female Sexual Distress Scale (FSDS) and the International Index of Erectile Functioning (IIEF) were used. RESULTS In total 74 patients returned the questionnaires (26.2%). 36.8% of women reported sexual dysfunction and 45% experienced sexual distress. In our male sample 8.8% reported mild to moderate erectile dysfunction. In females perceived self-competence in adolescence was associated with sexual distress (p<.01). In male adolescents associations were found between perceived self-competence in romantic relations (p<.01) and in close friendships (p<.05) and sexual desire in adulthood. CONCLUSION Pediatric surgeons should be more aware of sexual problems patients may face at older age as a result of their congenital disease and treatment. More standardized care and follow-up are needed. Prognosis study-Level II.

Mindfulness and fear of hypoglycaemia in parents of children with Type 1 diabetes: results from Diabetes MILES Youth - The Netherlands

To identify the sociodemographic and clinical correlates of fear of hypoglycaemia among parents of children (aged 4–18 years) with Type 1 diabetes and to examine the relationships between parental fear of hypoglycaemia, mindfulness and mindful parenting.

Children with anorectal malformations, hirschsprung disease, and their siblings: Proxy reports and self-reports

Objectives: The aim of the present study was to compare parent proxy reports with that of self-reports of children with anorectal malformations (ARMs) or Hirschsprung disease (HD) and healthy siblings and thereafter was examine whether these comparisons differed between patients and their siblings. Methods: Parents (n = 98) of either children with ARM (n = 44) or HD (n = 54) and a healthy sibling (n = 98) recruited from the 6 Dutch pediatric surgical centers and from the ARM and HD patient societies were included in this cross-sectional multilevel study. Agreement between child self-reports and parent proxy reports was compared through mean differences and through (intraclass) correlations. We conducted multilevel analyses to take dependencies between assessments within families into account. Results: All of the children (children with ARM or HD and their siblings) reported more pain and symptoms than their parents reported. We also found that only children with ARM or HD reported less positive emotions than their parents. Furthermore, higher correlations were found between parent proxy reports and patient-self reports than between parent proxy reports and sibling self-reports on cognitive functioning and social interaction. Conclusions: Parents tend to overestimate the physical functioning of both their ill and healthy children, and overestimate the emotional functioning of only their children with ARM or HD. Furthermore, children with ARM or HD and parents agree more on health-related quality of life domains than healthy children and parents.