Distress Thermometer For Parents Research Articles

Long-Term Maternal Mental Health after Spontaneous Preterm Birth.

The aim of this study is to investigate whether a history of spontaneous preterm birth (SPTB) is associated with maternal depressive and anxiety symptoms, or psychosocial distress in the fifth decade of life. This is a secondary analysis of the PreCaris-study, a prospective observational study in which we included 350 women with a history of SPTB between 220/7 and 366/7 weeks of gestation and compared them to 115 women who had a term birth. Primary outcomes were the Depression and Anxiety scores measured using the Hospital Anxiety Depression Scale and Psychosocial distress assessed with the Distress Thermometer for Parents. Secondary outcomes were self-reported impact of the birth in daily life and psychosocial support after delivery. After a median of 13 years after delivery, no significant differences were found in primary outcomes. Significantly more women with a history of SPTB reported that the birth still had impact in daily life; adjusted odds ratio: 2.46 (95% confidence interval: 1.35-4.48). A total of 57 (16.3%) women after SPTB reported to have needed professional psychosocial support after delivery but did not receive it. These women more often had a high Anxiety score (p = 0.030), psychosocial distress (p = 0.001), and influence of birth in daily life (p = 0.000). There are no long-term effects on depressive and anxiety symptoms and psychosocial distress in women who experienced SPTB compared with women who had a full-term pregnancy. A significant part of the women who delivered preterm needed psychosocial support but did not receive it and were at higher risk of anxiety, psychosocial distress, and impact in daily life. We therefore recommend offering all women after SPTB psychosocial support after delivery. · No long-term effects on depressive and anxiety symptoms and psychosocial distress after SPTB.. · A total of 16.3% of the cases needed professional psychosocial support after delivery but did not receive it.. · This subgroup was at higher risk of anxiety symptoms, psychosocial distress, and impact on daily life..

Long-term parental distress after pediatric hematopoietic stem cell transplantation for nonmalignant diseases.

Survival rates have continued to increase for pediatric hematopoietic stem cell transplantation (HSCT) for nonmalignant diseases. Despite the crucial role of caregivers in this high-intensity treatment, knowledge about long-term parental impact is lacking. This cross-sectional study assessed parental distress and everyday problems in parents of patients 2years and older after pediatric HSCT for a nonmalignant disease using Distress Thermometer for Parents (DT-P), and compared outcomes to matched Dutch parents of healthy children and Dutch parents of children with a chronic condition (CC). Median follow-up was 5.3years (interquartile range [IQR]: 2.9-8.6). Underlying diseases were inborn errors of immunity (N=30), hemoglobinopathies (N=13), and bone marrow failure (N=27). Mothers of pediatric HSCT recipients (N=70) reported comparable overall distress levels to mothers of healthy children, but experienced more distress related to parenting problems, specifically managing their child's emotions, discussing disease consequences, and fostering independence. Fathers of HSCT recipients (N=45) reported higher overall distress levels and had more emotional distress compared to fathers of healthy children. Overall, parental distress and everyday problems of parents of HSCT recipients are comparable to those of parents of children with CC. However, there is ongoing parental burden, both emotional and in parenting, long-term after HSCT compared to parents of healthy children, and the type of burden differs between mothers and fathers. These results indicate that individualized parental supportive care should not remain restricted to the acute hospitalization phase, but also be actively offered during long-term follow-up after pediatric HSCT.

Unraveling Dexamethasone-Induced Neurobehavioral and Sleep Problems in Children With ALL: Which Determinants Are Important?

Dexamethasone, the preferred corticosteroid in most treatment protocols for pediatric acute lymphoblastic leukemia (ALL), can induce undesirable side effects. Neurobehavioral and sleep problems are frequently reported, but the interpatient variability is high. We therefore aimed to identify determinants for parent-reported dexamethasone-induced neurobehavioral and sleep problems in pediatric ALL. Our prospective study included patients with medium-risk ALL and their parents during maintenance treatment. Patients were assessed before and after one 5-day dexamethasone course. Primary end points were parent-reported dexamethasone-induced neurobehavioral and sleep problems, measured with the Strengths and Difficulties Questionnaire and Sleep Disturbance Scale for Children, respectively. Analyzed determinants included patient and parent demographics, disease and treatment characteristics, parenting stress (Parenting Stress Index and Distress Thermometer for Parents), dexamethasone pharmacokinetics, and genetic variation (candidate single-nucleotide polymorphisms rs41423247 and rs4918). Statistically significant determinants identified in univariable logistic regression analyses were incorporated in a multivariable model. We included 105 patients: median age was 5.4 years (range, 3.0-18.8) and 61% were boys. Clinically relevant dexamethasone-induced neurobehavioral and sleep problems were reported by parents in 70 (67%) and 61 (59%) patients, respectively. In our multivariable regression models, we identified parenting stress as a significant determinant for parent-reported neurobehavioral (odds ratio [OR], 1.16; 95% CI, 1.07 to 1.26) and sleep problems (OR, 1.06; 95% CI, 1.02 to 1.10). Furthermore, parents who experienced more stress before start of a dexamethasone course reported more sleep problems in their child (OR, 1.16; 95% CI, 1.02 to 1.32). We identified parenting stress, and not dexamethasone pharmacokinetics, genetic variation, patient/parent demographics, or disease/treatment characteristics, as a significant determinant for parent-reported dexamethasone-induced neurobehavioral and sleep problems. Parenting stress may be a modifiable target to reduce these problems.

The psychosocial situation of families caring for children with rare diseases during the COVID-19 pandemic: results of a cross-sectional online survey

BackgroundThe COVID-19 pandemic is affecting many areas of life and has posed additional strains on the highly vulnerable group of caregivers of children with rare diseases (RDs). The psychosocial situation of the family caregivers deserves more attention, both in research and practice. The current study explores the distress level of caregivers of children with RDs, their psychosocial information needs, and caregiver-reported health-related quality of life (HRQoL) of children with RDs in times of the COVID-19 pandemic.MethodsData from a cross-sectional online survey conducted within the German CARE-FAM-NET project (children affected by rare diseases and their families-network) between March and August 2020 were examined. The study sample included 149 family caregivers, mostly mothers (83.2%) of 167 children with RDs. The survey assessed demographic and disease-related characteristics, distress and everyday problems of caregivers (Distress Thermometer for Parents; scale 0–10), psychosocial information needs (self-developed items; scale 0–100), and caregiver-reported HRQoL of the children with RDs (DISABKIDS Chronic Generic Measure, short-form; scale 0–100). Using descriptive statistics, we analyzed the psychosocial situation of families during the COVID-19 pandemic. We further conducted correlation analysis to investigate interrelations.ResultsThe distress level among caregivers was high (M = 6.84, SD = 2.43); 89.6% reported clinical distress (≥ 4). Everyday problems (e.g., sleep problems, fatigue, being out of shape, fears, feeling tense or nervous, and worry) were frequent. Caregivers reported a wide range of psychosocial information needs. In about half of the children (49.5%), caregiver-reported HRQoL was low, while average HRQoL (M = 58.7, SD = 19.5) was comparable to parent-reported norm data of children with severe clinical conditions. Distress correlated positively with psychosocial information needs (r = 0.40), and negatively with the caregiver-reported HRQoL of the children (r = − 0.46).ConclusionsThis study indicates a high psychosocial burden on family caregivers of children with RDs during the early COVID-19 pandemic, characterized by high distress levels and wide-ranging everyday problems, unmet psychosocial information needs, and reduced caregiver-reported HRQoL in children with RDs. The findings highlight the ongoing need for target group-specific, low-threshold support services (e.g., websites) during and after the pandemic.

Distress and post-traumatic stress in parents of patients with congenital gastrointestinal malformations: a cross-sectional cohort study

BackgroundCongenital gastrointestinal malformation (CGIM) require neonatal surgical treatment and may lead to disease-specific sequelae, which have a potential psychological impact on parents. The aim of this study is to assess distress and symptoms of post-traumatic stress disorder (PTSD) in parents of patients with CGIM. In this cross-sectional study, seventy-nine parents (47 mothers and 32 fathers) of 53 patients with CGIM completed the Distress Thermometer for Parents (DT-P) and the Self Rating Scale for Posttraumatic Stress Disorders (SRS-PTSD) as part of the multidisciplinary follow-up of their children (aged 5–35 months). Group differences were tested between parents and representative Dutch reference groups with regard to rates of (clinical) distress and PTSD, and severity of overall distress and PTSD, for mothers and fathers separately. Mixed model regression models were used to study factors associated with the risk of (clinical) distress, PTSD and with severity of symptoms of PTSD (intrusion, avoidance and hyperarousal).ResultsPrevalence of clinical distress was comparable to reference groups for mothers (46%) and fathers (34%). There was no difference in severity of overall distress between both mothers as well as fathers and reference groups. Prevalence of PTSD was significantly higher in mothers (23%) compared to the reference group (5.3%) (OR = 5.51, p < 0.001), not in fathers (6.3% vs 2.2.%). Symptoms of intrusion were commonly reported by all the parents (75%). Longer total length of child’s hospital stay was associated with more severe symptoms of intrusion, avoidance and hyperarousal. Child’s length of follow-up was negatively associated with severity of intrusion.ConclusionsHaving a child with CGIM has a huge impact on parents, demonstrated by a higher prevalence of PTSD in mothers, but not fathers, compared to parents in the general population. Monitoring of symptoms of PTSD of parents in follow-up is necessary.

Effectiveness of time-limited eye movement desensitization reprocessing therapy for parents of children with a rare life-limiting illness: a randomized clinical trial

BackgroundParents of children with a rare progressive life-limiting illness are at risk for parental posttraumatic stress disorder (PTSD). Studies on the treatment of parental PTSD with eye movement and desensitization reprocessing (EMDR) therapy in pediatric practice are lacking. Therefore this study aims to evaluate the feasibility and effectiveness of time-limited EMDR therapy in reducing PTSD symptoms, comorbid psychological symptoms, distress, and parental stress.MethodsMono-center randomized clinical trial conducted between February 2020 and April 2021. Fourteen parents (N = 7 mothers, N = 7 fathers) of mucopolysaccharidosis type III patients reporting PTSD symptoms on a (sub)clinical level were assigned to EMDR or a wait-list control condition followed by EMDR. Four sessions of EMDR (each 90 min) divided over two half-days were offered. Measurements were conducted at baseline, post-treatment/post-waitlist, and 3-months post-treatment. The primary outcome was PTSD symptom severity (PTSD Check List for DSM-5). Secondary outcomes included comorbid psychological symptoms (Brief Symptom Inventory), distress (Distress Thermometer for Parents) and parenting stress (Parenting Stress Questionnaire). Between-group comparisons pre-to-post treatment (N = 7 EMDR vs. N = 7 wait-list) and within-group comparisons (EMDR, N = 14) from pre-to-post treatment and from pre-treatment to 3-months follow-up were carried out per intent-to-treat linear mixed model analyses.ResultsCompared to wait-list, EMDR resulted in a significant reduction on total PTSD symptom severity (d = 1.78) and on comorbid psychological symptoms, distress and parenting stress (d = .63–1.83). Within-group comparisons showed a significant effect on all outcomes at post-treatment (d = 1.04–2.21) and at 3-months follow-up (d = .96–2.30) compared to baseline. EMDR was well-tolerated, associated with a low drop-out rate, a high therapy adherence and no adverse events.ConclusionTime-limited EMDR reduces PTSD symptoms, psychological comorbidity, distress and parenting stress in parents of children with a rare progressive life-limiting illness. This treatment was feasible for these overburdened parents. Recurrent monitoring of PTSD symptoms, and, if needed, offering this time-limited type of trauma treatment should be introduced in everyday pediatric practice.Trial registration Netherlands Trial Register, NL8496. Registered 01-04-2020, https://trialsearch.who.int/Trial2.aspx?TrialID=NL8496.

Parental Sleep, Distress, and Quality of Life in Childhood Acute Lymphoblastic Leukemia: A Longitudinal Report from Diagnosis up to Three Years Later.

Simple SummaryThis study assessed sleep problems, distress, and quality of life in parents of children with the most common form of childhood cancer, acute lymphoblastic leukemia (ALL). Parents completed questionnaires at different time points, shortly after diagnosis until 1 year after end of treatment. Before this study, longitudinal research on parental psychosocial functioning, especially sleep problems, was sparse. This study shows that although parental functioning improves over time, 33% of parents still report sleep problems three years after their child’s diagnosis. Half of those parents also report clinical distress. Presence of sleep problems and distress negatively affects quality of life over time. Vulnerable parents are those who experience little social support or parenting problems, report a chronic illness for themselves or pain for their child, have a child with higher risk ALL, and are closer to diagnosis. This study stresses the importance of systematically monitoring parental functioning both throughout and after treatment—including sleep.This study assessed sleep, distress and quality of life (QoL) in parents of children with acute lymphoblastic leukemia (ALL) from diagnosis to three years after, and the impact of sleep and distress on QoL. Additionally, this study explored determinants of sleep and distress. Parents completed the MOS Sleep, Distress Thermometer for Parents and SF-12 at four-five months (T0), one year (T1), two years (T2), and three years (T3) after diagnosis. The course of outcomes and longitudinal impact of clinically relevant sleep problems (>1SD above reference’s mean) and clinical distress (score ≥ 4) on QoL Z-scores were assessed with linear mixed-models. Determinants of sleep and distress were assessed with multinomial mixed-models. Parents (81% mothers) of 139 patients (60% males; 76% medium-risk (MR)) participated. Distress and QoL gradually restored from T0 to T3. Sleep problems improved, but were still elevated at T3: 33% reported clinically relevant sleep problems, of which 48% in concurrence with distress. Over time, presence of sleep problems or distress led to lower mental QoL Z-scores (SD-score −0.2 and −0.5, respectively). Presence of both led to a cumulatively lower Z-score (SD-score −1.3). Parents in the latter group were more likely to report insufficient social support, parenting problems, a chronic illness, pain for their child, having a child with MR-ALL, and being closer to diagnosis. In conclusion, parental well-being improves over time, yet sleep problems persist. In combination with ongoing distress, they cumulatively affect QoL. Special attention should be given to parents who are vulnerable to worse outcomes.

Food insecurity during COVID-19 in a Canadian academic pediatric hospital: a cross-sectional survey.

Background:Hospital-based food insecurity is defined as the inability of caregivers to obtain adequate food during their child’s hospital admission. We aimed to measure the prevalence of household and hospital-based food insecurity, and to explore the associations with caregiver distress in an academic pediatric hospital setting.Methods:We conducted a cross-sectional survey of caregivers of children admitted to the general pediatric ward of an academic pediatric hospital in Toronto, Ontario, from April to October 2020. We measured household food insecurity using the 18-item Household Food Security Survey Module, and included 3 adapted questions about hospital-based food insecurity. We measured caregiver distress with the Distress Thermometer for Parents. We used descriptive statistics to assess the proportion of respondents with food insecurity, and linear regression models to explore the relation of household (adult and child) and hospital-based food insecurity with caregiver distress. We used thematic analysis to explore caregivers’ feedback.Results:We contacted 851 caregivers, and 775 (91.1%) provided consent to participate. Overall, 430 (50.5%) caregivers completed at least part of the survey. Caregivers described a high prevalence of household (34.2%) and hospital-based (38.1%) food insecurity. Adult (β = 0.21, 95% confidence interval [CI] 0.07–0.36), child (β = 0.38, 95% CI 0.10–0.66) and hospital-based (β = 0.56, 95% CI 0.30–0.83) food insecurity were significantly associated with caregiver distress, independent of covariates. We identified financial burden, emotional and practical barriers, stress obtaining food and advocacy for food as important themes in caregiver feedback.Interpretation:Both household and hospital-based food insecurity were highly prevalent among caregivers. To reduce caregiver distress, hospitals need to consider reducing barriers for caregivers in obtaining food for themselves during their child’s admission.

Health-Related Quality of Life and Distress of Parents of Children With Avoidant Restrictive Food Intake Disorder.

Health-related quality of life (HRQOL) of children with avoidant restrictive food intake disorder (ARFID) is impaired. To measure HRQOL and distress of parents of children with ARFID. Cross-sectional cohort study. Parents of children with ARFID, visiting our multidisciplinary feeding team, completed questionnaires on the online Quality of Life in Clinical Practice portal; the Questionnaire for Adult's Health Related Quality of Life to assess parental HRQOL and the Distress Thermometer for Parents. Reference groups of parents of healthy (HC) and chronically ill children (CIC) were used. Eighty-five mothers and 62 fathers of 89 children with ARFID (58% female, median age 1.9 years) were included (response rate 68%). No differences were found regarding HRQOL in 11 of 12 domains between parents of children with ARFID and HC. Mothers of children with ARFID reported significantly higher HRQOL regarding pain and fathers a significantly lower HRQOL on depressive emotions compared to HC. No differences were found in overall and clinical distress scores between parents of children with ARFID and HC/CIC. Mothers of children with ARFID had significantly higher distress scores regarding cognitive problems compared to HC and parenting problems in children <2 years compared to HC/CIC. Significantly higher distress scores on parenting problems in children <2 years were found in fathers of children with ARFID compared to HC/CIC. Most HRQOL and distress scores of parents of children with ARFID were comparable to reference groups. Since parents of children with ARFID perceive a lack of understanding and support from the environment, professionals should suggest peer support through patient's organizations. Furthermore, it is important to offer professional support since parents indicated that they would like to talk to a professional about their situation.

Psychological Distress in Parents of Children with Cancer: A Descriptive Correlational Study

Objective:This study aimed to ascertain levels of distress and contributing factors among parent caregivers of pediatric cancer patients in Singapore.Methods:In this descriptive correlational study, parental caregivers were recruited via convenience sampling during their child's inpatient admission or outpatient appointment. They were asked to complete a self-administered demographic survey and the Distress Thermometer for Parents (DT-P) tool. Descriptive statistics, Chi-square tests, and correlation analyses were performed.Results:The mean DT-P score was 5.07 (standard deviation = 2.78), out of a maximum of 10. Distress was reported among 67.9% (n = 55) of caregivers. The cognitive domain of caregiving problems on the DT-P was found to correlate with distress. Parents most frequently reported cognitive problems (n = 21, 25.9%) and, least often, social problems (n = 6, 7.4%). Practical (P = 0.040), emotional (P = 0.001), physical (P = 0.026), and cognitive problems (P = 0.001) of caregiving were statistically significantly associated with distress.Conclusions:Notable levels of distress and proportions of distressed parents highlighted the heavy burden of caregiving. This may also be attributed to the differences in caregiving challenges. The psychological effects of parental caregiving highlight the need for supportive measures for pediatric cancer caregivers.

Parental sleep after induction therapy for childhood acute lymphoblastic leukemia

Abstract Background: Parents of pediatric patients with acute lymphoblastic leukemia are at risk for developing sleep problems. This study aimed to assess the prevalence of parental sleep problems after induction, the most intensive treatment phase, and identify predictors of poor sleep—as substantiated by a proposed conceptual model. Methods: Parents completed the Medical Outcomes Study Sleep Scale, Distress Thermometer for Parents, and a sociodemographic questionnaire approximately 4 months after their child's diagnosis. Clinically relevant sleep problems were defined as a sum score &gt;1 SD above the reference's mean, and severe problems as &gt;2 SD. Clinical distress was defined according to the pre-established cut-off of ≥4. Pediatric patients wore an actigraph for 7 days to assess sleep efficiency, total sleep time, sleep onset latency, and wake after sleep onset. Predictive determinants of parental sleep (sociodemographic, psychosocial, actigraphic estimates of child sleep) were assessed with multiple linear regression. Results: Questionnaires were available from 123 parents (77% mothers). Their children (n = 120, median age 5.5 years, 60% boys) were on average 4.7 ± 1.3 months from diagnosis. The prevalence of parental sleep problems was 51%; half of this group reported severe problems. Identified predictors were clinical distress (bèta .35, P = .002), insufficient social support (bèta .26, P = .020), more “wake after sleep onset” of the child (bèta .22, P = .042), and chronic illness in the parent (bèta .18, P = .097). Explained variance was 39%. Conclusions: Parents of pediatric patients with acute lymphoblastic leukemia commonly report sleep problems after their child's induction treatment. Enhancing parental well-being benefits the whole family. Hence, early attention to sleep is warranted.

Parental functioning during maintenance treatment for childhood acute lymphoblastic leukemia: Effects of treatment intensity and dexamethasone pulses.

During maintenance treatment, Dutch pediatric patients with medium-risk (MR) acute lymphoblastic leukemia (ALL) receive intravenous chemotherapy and cyclic dexamethasone. Dexamethasone affects child's sleep and behavior. Standard-risk (SR) patients only receive oral chemotherapy, without dexamethasone. Effects of stratified therapy on parents are not well known. This study compares parental sleep, distress and quality of life (QoL) with the general population, between MR and SR groups, and on- and off-dexamethasone (MR group). One year after diagnosis, parents of MR patients completed the Medical Outcomes Study (MOS) sleep, distress thermometer for parents and Short Form-12 (SF-12) twice; once on-dexamethasone and once off-dexamethasone. SR parents completed one measurement. Sleep problems, distress and QoL scores (off-dexamethasone) were compared to reference values and between MR and SR. Score differences on- and off-dexamethasone were assessed by multilevel regression analysis. Parents (80% mothers) of 121 patients (57% males; 75% MR, 25% SR) completed 191 measurements. Compared to reference values, parents reported more sleep disturbances, higher distress, and lower mental QoL. Additionally, MR parents reported clinical distress (score≥4), whereas SR parents (on average) did not (mean 4.8±2.4 vs 3.5±2.4, P=.02). Within the MR group, outcomes did not significantly differ on- and off-dexamethasone. Parents of ALL patients report sleep problems, high distress, and QoL impairment. Within the MR group, parental functioning did not differ on- and off-dexamethasone. However, MR parents reported clinical distress more often than SR parents, possibly reflecting differences in prognostic estimates and treatment burden. This perhaps includes the overall strain of cyclic dexamethasone. This study highlights the need for psychosocial support throughout treatment, regardless of risk stratification.

Validation of the distress thermometer for caregivers of children and adolescents with schizophrenia.

To develop and psychometrically test the distress thermometer for caregivers (DT-C) and document the distress level in primary caregivers of children and adolescents diagnosed with schizophrenia. A validation diagnostic accuracy study and descriptive cross-sectional survey. DT-C was adopted based on Harverman's distress thermometer for parents. The cut-off score was detected by using receiver operating characteristic analysis with the Depression Anxiety Stress Scale-21 as a reference standard in a sample of 324 caregivers of children and adolescents diagnosed with schizophrenia in China collected between Jan 2017 and Feb 2018. One-item DT of DT-C indicated a good retest reliability (r=0.86) and one-item DT and the Problem List (PL) indicated good convergent validity (r=0.67-0.88). Overall and individual PL domains showed good internal consistency (KR 20 values ranged from 0.70-0.90). Setting seven as the cut-off score, the values of sensitivity (0.72-0.81), specificity (0.86-0.90), Youden's index (0.61-0.70), positive predictive value (0.67-0.74), and negative predictive value (0.84-0.92) were most satisfactory and area under curve values showed significantly excellent discrimination (0.88-0.90). The average DT score for the 324 participants was 6.34 (SD 2.49), with 46.9% of the participants above the cut-off. Caregivers above the cut-off score faced significant multiple problems in practical, family/social, cognitive, emotional, and parenting domains. The DT-C, with six domains containing 35 items in Problem List and with the cut-off score at seven, can be a rapid screening tool to measure distress in these caregivers. The level of distress in caregivers was relatively high. Psychoeducation on specific needs and a solid mutual support network are recommended for mitigating caregivers' distress. This study adapted a reliable DT-C to measure distress of caregivers, which has the potential to be introduced to caregivers of other types of child and adolescent mental disorders in research, assessments and care planning for health professionals.

Determinants of health-related quality of life proxy rating disagreement between caregivers of children with cancer

PurposeProxy reports of health-related quality of life (HRQoL) are commonly used in pediatric oncology. However, it is not known if caregivers’ reports differ. This study therefore aims to compare paternal and maternal proxy reports, and explore determinants of couple disagreement (sociodemographic and medical characteristics, and parental QoL and distress).MethodsBoth parents completed the PedsQL generic (child’s HRQoL), Short Form-12 (own QoL) and Distress Thermometer for Parents. To assess agreement in child HRQoL, intra-class correlation coefficients (ICCs) were calculated. Differences between fathers/mothers were assessed with paired t tests. Systematic disagreement patterns were visualized with Bland–Altman plots. Characteristics of parental couples with a mean proxy difference in the highest quartile (highest proxy score minus lowest proxy score) were explored with multiple logistic regression analysis.ResultsParents of 120 children with cancer (87% post-treatment, mean age 11.0 ± 5.7 years) participated. No significant differences were found between paternal and maternal proxy scores, and agreement was good on all scales (ICCs 0.65–0.83). Bland–Altman plots revealed no systematic disagreement patterns, but there was a wide range in magnitude of the differences, and differences went in both directions. Couples with a mean proxy difference (irrespective of which direction) in the highest quartile (± 20 points) were more likely to have a child in active treatment, with retinoblastoma or relapsed disease, and to diverge in their own QoL.ConclusionsIf proxy reports of only one parent are available, clinicians may reasonably assume that paternal and maternal reports are interchangeable. However, if in doubt, respondent’s sex is not of major importance, but clinicians should be aware of patient’s and family’s characteristics.

Concurrence of sleep problems and distress: prevalence and determinants in parents of children with cancer

ABSTRACT Background: Parents of children with cancer are at risk for sleep problems. If these problems persist, an important perpetuating factor might be ongoing parental distress. Objective: The aim of this study is to assess the prevalence of sleep problems and the concurrence with distress in parents of children treated for cancer, and to identify predictors of this symptom clustering. Method: Parents completed the Medical Outcomes Study (MOS) Sleep Scale and Distress Thermometer for Parents (DT-P). Clinically relevant sleep problems were defined as a score >1SD above the norm and clinical distress as a thermometer score above the established cut-off of 4. Four parent categories were constructed: neither sleep problems nor distress; no distress but sleep problems; no sleep problems but distress; both sleep problems and distress. Predictive determinants (sociodemographic, medical, psychosocial) for each category were assessed with multilevel multinomial logistic regression. Results: Parents (202 mothers and 150 fathers) of 231 children with different cancers participated. Mean time since diagnosis was 3.3 ± 1.4 years (90% off-treatment). The prevalence of sleep problems was 37%. Fifty percent of parents reported neither sleep problems nor distress, 9% had only sleep problems, 13% only distress, and 28% reported both. Compared to parents without sleep problems or distress, parents who reported both were more likely to report parenting problems (OR 4.4, [2.2–9.1]), chronic illness (OR 2.8, [1.2–6.5]), insufficient social support (OR 3.7, [1.5–9.1]), pre-existent sleep problems (OR 6.2, [2.0–18.6]) and be female (OR 1.8, [1.1–4.2]). Conclusions: Sleep problems are common in parents of children treated for cancer, and occur mostly in the presence of clinical distress. Future research must show which interventions are most effective in this group: mainly targeted at sleep improvement or with prominent roles for stress management or trauma processing.

Health-related quality of life, anxiety, depression and distress of mothers and fathers of children on Home parenteral nutrition

Parents of children with intestinal failure, dependent on Home Parenteral Nutrition (HPN), may experience psychosocial problems due to the illness and intensive treatment of their child. Literature concerning psychosocial problems is scarce. Therefore, we aimed to investigate Health-Related Quality of Life (HRQOL), levels of anxiety, depression, distress and everyday problems of these mothers and fathers. A multicenter study was conducted among 37 mothers and 25 fathers of 37 children on HPN (response-rate 37/49=76%, mean age children=5.1 years, SD=4.6). Parents completed three questionnaires to measure different outcomes on the KLIK website (www.hetklikt.nu): the TNO-AZL QOL Questionnaire (TAAQOL) to measure HRQOL, the Hospital Anxiety and Depression Scale (HADS) to measure anxiety and depression, and the Distress Thermometer for Parents (DT-P) to measure distress. Scores were compared to Dutch reference mothers and fathers using Mann-Whitney U-tests. No differences were found in HRQOL, measured by the TAAQOL, between HPN parents compared to the reference groups, except for the subscale 'depressive emotions' for mothers (p=.01) and 'daily activities' for fathers (p=.04). HPN mothers reported higher levels of depression compared to reference mothers (p=.001). In addition, HPN mothers and fathers reported higher levels of distress than reference mothers (p=.001) and fathers (p=.03). HPN mothers reported significantly more problems in the practical, emotional, cognitive and parenting domains, fathers in the social, emotional and parenting domains. On HRQOL, anxiety and depression, HPN parents generally did not show much differences compared to reference parents. However, when asked about parental distress and everyday problems, HPN treatment of their child seems highly stressful for some parents and influences daily functioning. Therefore, structural screening for parental psychosocial problems in clinical practice, e.g. using the DT-P, is necessary in order to improve the well-being of both these parents and their children dependent on HPN.

Regular exercise improves the well-being of parents of children with cancer.

Parents of children with cancer describe impaired physical and social functioning, sleep disturbance and poor mental health. Exercise-related interventions impact positively on these quality of life domains, but have not been examined in this population. The aim of this longitudinal pilot study was to explore the feasibility of a 12-week pedometer-monitored walking intervention among parents of children with cancer, assessing adherence to a set activity target of 70,000 steps per week, and to explore the benefits of physical activity on mental and physical health. Parents were provided with a pedometer and requested to achieve a daily step count of 10,000 steps per day for 12 weeks. Mood, well-being and psychological distress were examined using validated questionnaires (Profile of Mood States 2nd edition [POMS-2], Distress Thermometer for Parents [DT-P] and Depression Anxiety Stress Scales [DASS-42]) at baseline, midpoint (6 weeks) and endpoint (12 weeks) to identify changes in these domains with increased activity. Fifteen parents were recruited. The majority increased their counts during the first 4 weeks of the study and maintained this to week 8 (n = 12). Time-dependent improvements were identified in the following psychometric test outcomes at week 12: DT-P score (likelihood ratio test [LRT] P= 0.02), POMS-2 total mood disturbance (LRT P = 0.03), fatigue inertia (LRT P = 0.009), tension anxiety (LRT P = 0.007) and vigour activity (LRT P = 0.001). Mental health benefits of a pedometer-based exercise intervention for parents of children with cancer were identified. Such programs should be included in a holistic approach to improve the psychological outcomes of parents whose children are receiving treatment for cancer.

Development and validation of Distress Thermometer for Parents

Development and validation of Distress Thermometer for Parents

Development and Validation of the Distress Thermometer for Parents of a Chronically Ill Child

To develop and validate a Distress Thermometer for Parents (DT-P) for chronically ill children and to determine a cutoff score for clinical distress. Parents of a chronically ill child (0-18 years) were recruited via announcements or were actively approached at the outpatient clinics of the Emma Children's Hospital/Academic Medical Center and Vrije Universiteit Medical Center. We modeled the development of the DT-P on the Distress Thermometer used in oncology medical care. The DT-P consists of a thermometer score from 0 (no distress) to 10 (extreme distress) and a problem list (practical, social, emotional, physical, cognitive, and parenting domains). The DT-P was validated with the Hospital Anxiety and Depression Scale (HADS) and the Parenting Stress Index. The mean thermometer score of the 706 participating parents was 3.7 (SD 3.0). The thermometer score and the scores in the practical, emotional, physical, and cognitive problem domains were strongly related to anxiety, depression, and the total score of the HADS (0.55 ≤ r ≤ 0.72). The thermometer score and all problem domain scores were moderately-to-strongly related to the Parenting Stress Index (0.38 ≤ r ≤ 0.63). A cutoff-score of 4 correctly identified 86% of "clinical HADS cases" (sensitivity) and 67% of "nonclinical HADS cases" (specificity). We developed the DT-P and examined its diagnostic utility in a large sample. The DT-P appeared to be a valid and useful short screening-tool for identifying parental distress.