Obsessive-compulsive personality disorder symptoms as a risk factor for postpartum depressive symptoms.

For women with obsessive-compulsive personality disorder (OCPD) trait symptoms, coping with childbearing and parenting could be associated with postpartum depressive symptoms. Therefore, the possible relationship between OCPD trait symptoms and trajectories of postpartum depressive symptoms was examined. A cohort of 1427 women was followed from late pregnancy until 12 months' postpartum. Trajectories of postpartum depressive symptoms were determined using growth mixture modeling with five repeated assessments. Next, the relationship between OCPD trait symptoms and these trajectories was examined through multinomial regression. Three postpartum depressive symptom trajectories were identified: (1) low symptoms (92%), (2) increasing-decreasing symptoms (inverted u-shape) (5%), and (3) increasing symptoms (3%). OCPD trait symptoms were associated with a higher likelihood of the trajectories increasing-decreasing symptoms (OR 1.26; 95% CI 1.14-1.39) and increasing symptoms (OR 1.16; 95% CI 1.02-1.32), compared to reference trajectory (low symptoms), adjusted for age, educational level, unplanned pregnancy, previous depressive episode (s), and parity.

Stability of the Pregnancy Obsessive-Compulsive Personality Disorder Symptoms Checklist.

Because stability over time is central to the definition of personality disorder, aim of the current study was to determine the stability of the Pregnancy Obsessive-Compulsive Personality Disorder (OCPD) Symptoms Checklist (N = 199 women). Strong positive correlations between assessments at 32 weeks of pregnancy and 2 and 3-3.5 years after childbirth were found (r between .62-.72), and the group mean score did not change over time. The Pregnancy OCPD Symptoms Checklist assesses stable, trait-like symptoms of OCPD.

The relationship between parenting stress and parent-child interaction with health outcomes in the youngest patients with type 1 diabetes (0-7 years).

UNLABELLED: To test whether parenting stress and the quality of parent-child interaction were associated with glycemic control and quality of life (QoL) in young children (0-7 years) with type 1 diabetes (T1DM), we videotaped 77 families with a young child with T1DM during mealtime (including glucose monitoring and insulin administration). Parent-child interactions were scored with a specifically designed instrument. Questionnaires assessed general and disease-related parenting stress and (diabetes-specific (DS)) QoL. HbA(1c) (glycemic control) was extracted from the medical records. Both general and disease-related parenting stress were associated with a lower (DS)QoL (r ranged from -0.39 to -0.70, p < 0.05), but not with HbA(1c) levels. Furthermore, with regard to the parent-child interaction, emotional involvement of parents (r = 0.23, p < 0.05) and expressed discomfort of the child (r = 0.23, p < 0.05) were related to suboptimal HbA(1c) levels. There was no clear pattern in the correlations between parent-child interaction and (DS)QoL. CONCLUSION: The results support the notion that diabetes does not only affect the child with T1DM: T1DM is a family disease, as parenting factors (like stress and parent-child interactions) are associated with important child outcomes. Therefore, it is important for health-care providers to not only focus on the child with T1DM, but also on the family system.

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.

Psychometric properties of PedsQL generic core scales for children with functional constipation in the Netherlands.

OBJECTIVES: The aim of the study was to evaluate the psychometric properties of the Dutch translation of the Pediatric Quality of Life Inventory version 4.0 Generic Core Scales (PedsQL) in children with functional constipation (FC). METHODS: The PedsQL was completed by children with FC ages 5 to 18 years and by the parents of children ages 2 to 18 years. To assess construct validity, all of the parents and children completed the PedsQL Gastrointestinal Symptoms Module (GI module) and children ages 8 to 18 years completed the defecation disorder list. Item response distributions, internal consistency reliability, patient-parent agreement, and discriminating ability were evaluated. RESULTS: Overall, 269 children were enrolled. The PedsQL showed minimal missing responses (self-report: 5.3% with >50% missing, parent report: 2.6% with >50% missing) and achieved satisfactory internal consistency for the total (self-report: α = 0.86, parent report: α = 0.88), physical health (self-report: α = 0.75, parent report α = 0.83), and psychosocial health (self-report: α = 0.80; parent report: α = 0.85) scores. Internal consistency was less convincing for those ages 5 to 7 years (α = 0.53-0.77) than for older individuals. Self-reported health-related quality of life was lower than parent reported, with the exception of children ages 5 to 7 years. Interrater reliability intraclass correlations were 0.52 to 0.61 for the overall population. Correlations among the PedsQL, GI module, and defecation disorder list were consistent with a priori hypotheses and generally supported construct validity. The PedsQL distinguished between a previously published healthy reference sample and children with FC, and between those with mild and severe symptoms (P < 0.05). CONCLUSIONS: The self-reported and proxy reported PedsQL demonstrated satisfactory measurement properties in Dutch children with FC ages 8 to 18 years. Further research is needed to establish internal consistency and validity in those ages 5 to 7 years.

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

BACKGROUND: In 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 parent's 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/DESIGN: First, 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. DISCUSSION: A 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.

Determining at What Age Children Provide Sound Self-Reports: An Illustration of the Validity-Index Approach.

In psychological assessment of children, it is pivotal to establish from what age on self-reports can complement or replace informant reports. We introduce a psychometric approach to estimate the minimum age for a child to produce self-report data that is of similar quality as informant data. The approach makes use of statistical validity indicators such as person-fit and long-string indices, and can be readily applied to data commonly collected in psychometric studies of child measures. We evaluate and illustrate the approach, using self-report and informant-report data of the PedsQL, a pediatric health-related quality of life measure, from 651 child-mother pairs. To evaluate the approach, we tested various hypotheses about the validity of the self-report data, using the Gnp person-fit index as the validity indicator and the mother informant-data as a benchmark for validity. Results showed that Gnp discriminated between self-reports of younger and older children, between self-reports of children that completed the PedsQL alone or with a parent, and between self-reports and informant reports. We conclude that the validity-index approach has good potential for future applications. Future research should further evaluate the approach for different types of questionnaires (e.g., personality inventories) and using different validity indices (e.g., response-bias indices).

Factors affecting quality of life of children and adolescents with anorectal malformations or Hirschsprung disease.

OBJECTIVES: First, to compare the quality of life (QL) and perceived self-competence of children and adolescents with anorectal malformations or Hirschsprung disease with that of reference groups. Second, to identify predictors of QL. PATIENTS AND METHODS: A total of 491 patients with anorectal malformations or Hirschsprung disease were sent a questionnaire, which assessed QL (mental, physical), disease-specific functioning (defecation-related), perceived self-competence (self-esteem, athletic competencies, school attitude), and demographic characteristics (sex, age). The clinical characteristics (disease severity, presence of congenital anomalies) were extracted from medical records. RESULTS: More than 50% (316, 64%) of patients with anorectal malformations or Hirschsprung disease completed the questionnaire. On average, children and adolescents in both patient groups reported no differences in QL domains compared with the reference groups. However, standard deviations revealed considerable individual variation, indicating the presence of patients with high levels of QL as well as patients with low levels of QL. Children and adolescents in both patient groups reported psychosocial problems in all domains, compared with the reference groups. Females, older patients, and those with a severe form of the disease reported lower levels of perceived self-competence and global disease-specific functioning, which in turn predicted QL. CONCLUSIONS: Our results should alert clinicians to patients who are at risk for QL problems and may therefore be in need of extra care. Our findings illustrate the importance of both global disease-specific functioning and perceived psychosocial competencies for enhancing the QL of these patients.

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.

Quality of life in adult survivors of correction of esophageal atresia.

HYPOTHESIS: Long-term quality of life (QOL) in adults after correction of esophageal atresia (EA) is comparable with that of healthy adults. DESIGN: Outcome study with a consecutive sample and follow-up after 16 years or longer. SETTING: Pediatric surgical center (academic center) in a tertiary hospital. PATIENTS AND METHODS: A questionnaire was sent to 119 consecutive surviving adults who were treated for EA between 1947 and 1986. The questionnaire was to assess sociodemographic characteristics and generic and disease-specific QOL and contained 3 open-ended questions about the consequences of the disease in daily life. Clinical characteristics were collected from patient case notes. RESULTS: Ninety-seven (82%) of the 119 questionnaires were completed and returned. When comparing the generic QOL of patients who had EA with that of healthy subjects, we found no differences in overall physical and mental health. The presence of concomitant congenital anomalies did not influence generic QOL. A third of the patients reported that EA had had negative effects on their daily lives. Gastrointestinal symptoms such as dysphagia were most often mentioned (23%). CONCLUSION: In general, after EA correction, patients perceive their generic and disease-specific QOL to be good. The presence of concomitant congenital anomalies did not influence generic QOL. However, a third of patients reported that the disease had had negative consequences.

Mindful Parenting Assessed Further: Psychometric Properties of the Dutch Version of the Interpersonal Mindfulness in Parenting Scale (IM-P).

Psychometric properties of the Dutch version of the Interpersonal Mindfulness in Parenting Scale (IM-P) were studied in a general population sample of mothers of adolescents (n=866) (study 1). A six-factor structure (29 items) emerged using exploratory factor analysis. A main difference from the original IM-P was that aspects of compassion and emotional awareness were separated into different factors for the self and the child, instead of combined into one factor. In a second general population sample of mothers of adolescents (n=.99), the six-factor structure was confirmed using confirmatory factor analysis (study 2). The proposed 29-item version of the IM-P and its subscales were shown to have good internal consistencies, apart from the sixth factor. As expected, a high correlation was found with general mindfulness questionnaires (FFMQ and FMI). Furthermore, the IM-P correlated positively as expected with quality of life and optimism and negatively with depression and dysfunctional parenting styles. These expected indications of construct validity were found in study 2, as well as in mothers (n=112) of adolescents with type 1 diabetes mellitus (study 3) which was added to examine whether the Dutch version of the IM-P was also valid in a pediatric population. Overall, these three studies present good psychometric properties of the Dutch translation of the first measure of mindful parenting.

Explaining change in quality of life of children and adolescents with anorectal malformations or Hirschsprung disease.

OBJECTIVES: The purpose of this work was to examine changes in quality of life, disease-specific functioning, and psychosocial competencies of children and adolescents (8-16 years of age) with anorectal malformations or Hirschsprung disease and to identify predictors of change in quality of life by testing an explanatory model in which background variables explained changes in quality of life via changes in disease-specific functioning and psychosocial competencies. METHODS: Questionnaires were administered to 129 patients with anorectal malformations and 121 patients with Hirschsprung disease within a 3-year interval. Clinical and sociodemographic background variables were measured on the first occasion. Quality of life (physical and mental), disease-specific functioning (defecation-related), and psychosocial competencies (self-esteem, athletic competencies, and school attitude) were measured on both occasions. RESULTS: Patients improved in disease-specific functioning and mental quality of life. Changes in quality of life were indeed explained by the explanatory model. Among other things, the results indicated that patients with a severe form of the disease or with additional congenital diseases showed worsening of school attitude, which in turn affected change in mental quality of life negatively. CONCLUSIONS: Children and adolescents with anorectal malformations or Hirschsprung disease reported better quality of life over time. To improve and maintain an optimal level of children's and adolescents' quality of life, it is important to direct treatment both to reducing symptoms and enhancing psychosocial competencies, in particular by paying attention to school attitude.

Young adult patients with a history of pediatric disease: impact on course of life and transition into adulthood.

PURPOSE: To 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. METHODS: A total of 508 young adults from the general Dutch population and 650 patients, aged 18-30 years, participated: 348 survivors of childhood cancer, 93 patients with anorectal malformations, 72 patients with Hirschsprung's disease, 61 patients with oesophageal atresia, 76 patients with end-stage renal disease. They completed the Course of Life Questionnaire, which retrospectively assesses the achievement of developmental milestones (autonomy, psychosexual and social development), and risk behavior (antisocial behavior, substance use and gambling). RESULTS: The young adults grown up with a chronic or life-threatening disease proved to have achieved significantly fewer milestones, or at older age than their peers, in all course-of-life domains. The course of life of young adults grown up with esophageal atresia was not delayed compared with that of their peers, whereas that of survivors of childhood cancer and patients with end-stage renal disease was delayed most. CONCLUSIONS: Health care providers should help to minimize the harm for children who grow up with a chronic or life-threatening disease by encouraging parents to stimulate social contacts and autonomy. Attention should especially be directed at children and adolescents growing up with childhood cancer or with end-stage renal disease.

Hirschsprung's disease: healthcare meets the needs.

OBJECTIVE: The objective of this study was to examine the types of healthcare services used by children, adolescents, and adults with Hirschsprung Disease (HD) in relation to the severity of the initial defect (mild, severe), whether additional care was needed, the provision of information, transfer to adult care, and satisfaction with the care provided. METHODS: Three hundred twenty (71%) HD patients, ages 6 to 54, completed a questionnaire that assessed the use of healthcare services, the need for more healthcare, the provision of information, the transfer to adult care and satisfaction with the provided care. RESULTS: In 6 months, 45% of the children, 14% of the adolescents, and 15% of the adults consulted a medical specialist. Compared with patients with a mild form of HD in the age range of 6 to 16 years, only the more severely afflicted adult patients visited medical professionals more often (10% vs 29%) (P < .05). Of the children, the adolescents, and the adults 23%, 8%, and 6% respectively consulted a nonmedical professional. Less than 15% of all patients whould have liked more treatment. In 6 months 51% of the children, 24% of the adolescents, and 21% of the adults received treatment information, of which respectively 14, 8, and 20% wished they had received more information. Three (12%) patients who needed adult care encountered problems with the transfer. Almost all patients were satisfied with the care provided. CONCLUSIONS: There is good access to medical healthcare services, especially for children. The only lacuna in the healthcare system we revealed was a lack of information, particularly for adult patients. Most parents and patients reported to be very satisfied with the provided care.

Explaining change over time in quality of life of adult patients with anorectal malformations or Hirschsprung's disease.

PURPOSE: The aim of this study was to examine changes in the quality of life of adult patients with anorectal malformations or Hirschsprung's disease over a three-year interval and to identify demographic, clinical, and psychosocial variables that explain possible quality-of-life changes. Understanding the factors that affect changes in quality of life over time is particularly important to provide adequate care. METHODS: Questionnaires were administered to 261 patients (77 percent), with a three-year interval. Background characteristics, including demographic and clinical variables, and psychosocial variables (i.e., self-esteem, mastery, social support, disease cognition) were measured on one occasion. Generic and disease-specific quality of life were measured twice. RESULTS: On average patients indicated no change in quality-of-life level after three years. However, variance in the change scores revealed individual variation, indicating the presence of patients who improved and patients who deteriorated. Patients who were female, older, have other congenital diseases, or a stoma reported poorer quality of life over time. The psychosocial variable "disease cognition" most strongly affected the change in quality of life of patients with anorectal malformations or Hirschsprung's disease. CONCLUSIONS: Our results could alert clinicians to patients who are at risk for quality-of-life deterioration and might therefore be in need for extra care. Our findings illustrate the importance of psychosocial functioning for enhancing the quality of life over time of these patients.

Anorectal malformations: does healthcare meet the needs?

OBJECTIVES: The first aim was to identify the types of healthcare services used by children, adolescents, and adults with anorectal malformation (ARM) in relation to the severity of their disease and to examine whether additional care was needed. The second aim was to evaluate specific areas in the healthcare system, including provided information, transfer from pediatric to adult care, and satisfaction with the provided care. METHODS: Three hundred eighty-six (61%) patients with ARM, ages 6 to 52, completed a questionnaire that assessed their use of healthcare services and the need for additional services. Also, questions were asked about specific areas in the healthcare system. Clinical and sociodemographic characteristics were extracted from medical records. RESULTS: In the preceding 6 months 50% of the children, 24% of the adolescents, and 24% of the adults consulted a medical specialist. Compared with patients with a mild form of ARM in the age range of 6 to 16 years, the more severely afflicted patients visited medical professionals more often (18% vs. 32%). Particularly, adolescents in the age range of 12 to 16 years with a severe form of the disease more often visited the pediatric surgeon than their peers with a mild form (2% vs. 16%). Twenty-three percent of the children, 7% of the adolescents, and 8% of the adults consulted a nonmedical professional. Twenty percent of the children, 13% of the adolescents, and 17% of the adults would have liked additional or more treatment of a nonmedical professional. In 6 months, 40% of the children, 24% of the adolescents, and 20% of the adults received treatment information. One third of the adult patients who were transferred to "adult" surgeons encountered transfer problems. Almost all patients were satisfied with the care provided. CONCLUSIONS: There is good access to medical healthcare services, especially for children. However, more psychosocial and paramedical care is considered necessary. As could be expected, children and adolescents with a severe form of the disease reported to have visited a medical specialist more often. Although healthcare for patients with ARM may be improved at certain points, most parents and patients were very satisfied with the care provided.

Expectant management versus surgical evacuation in first trimester miscarriage: health-related quality of life in randomized and non-randomized patients.

BACKGROUND: Expectant management, although less effective, is an alternative treatment option for surgical evacuation in women with a miscarriage. We assessed health-related quality of life (HRQL) differences over time between expectant and surgical management in women with a miscarriage. METHODS: Women with a miscarriage were randomized to either expectant (n = 64) or surgical (n = 58) management, and 305 eligible women who refused randomization because of a preference for either treatment option were managed according to their choice following the same clinical protocol (126 expectant, 179 surgical). The main outcome measures were score differences of HRQL during 12 weeks. Repeated measures analysis was applied. RESULTS: Out of a total of 427 women, 198 were excluded in the questionnaire follow-up, leaving 229 women who participated. Mental health of women allocated to expectant management improved more and earlier (treatment effect) than of women allocated to surgical evacuation. Mental health scores were significantly better in women who chose, rather than women who were randomized, to curettage. The groups managed according to their own preference showed no differences in mental health scores. CONCLUSION: Women with a miscarriage who chose their own treatment had the best HRQL over time, supporting the role of free choice from a clinical point of view. Women without a treatment preference should be encouraged to start with expectant management for psychological reasons.

Critical factors affecting quality of life of adult patients with anorectal malformations or Hirschsprung's disease.

OBJECTIVES: The first objective was to compare the quality of life of adult patients with anorectal malformations (ARM) or Hirschsprung's disease (HD) and to compare both groups with healthy people. And the second objective was to examine the factors that affect the quality of life of patients with ARM or HD, using a theoretical model in which patients' background characteristics explain quality of life via mediating disease-specific functioning and psychosocial functioning. METHODS: Three hundred and forty-one patients completed a questionnaire, which assessed sociodemographic characteristics, disease-specific and psychosocial functioning, and quality of life. Clinical factors were extracted from the medical records. RESULTS: Patients with ARM or Hirschsprung's disease did not differ in their quality of life. Compared to healthy people, both patient groups reported more limitations in their "overall" physical quality of life, but only patients with ARM reported impaired quality of life on several specific domains (e.g., physical role-functioning, pain). The model was largely accepted. Most striking were the strong effects of the psychosocial functioning factors in contrast to weak effects of the disease-specific "constipation" and "fecal continence" factors. CONCLUSIONS: The quality of life of patients with ARM or Hirschsprung's disease was found to be comparable. Compared to healthy people, both patient groups encountered "overall" physical health problems, but only patients with ARM reported additional pain and limitations in role functioning due to physical problems. It appeared that psychosocial functioning had the most important effect on the quality of life of patients with ARM or Hirschsprung's disease, while fecal incontinence and constipation had almost no effect on their quality of life.