Mental health and professional outcomes in parents of children with chronic kidney disease.

BACKGROUND: This study evaluated parenting stress, anxiety, and depression symptoms and their associated factors in parents of children with chronic kidney disease (CKD). METHODS: This cross-sectional study compared parents of patients with CKD (0-18 years) with a matched control group of parents of healthy children. Both groups completed the Parenting Stress Index - Short Form, the Hospital Anxiety and Depression Scale, and a sociodemographic questionnaire. RESULTS: The study group consisted of 45 parents (median age 39; 32 mothers) of CKD patients (median age 8; 36% female). Nearly 75% of children had CKD stages 2, 3, or 4, and 44.5% had congenital anomaly of the kidney and urinary tract. Five children (11%) were on dialysis, and 4 (9%) had a functioning kidney graft. Compared with parents of healthy children, more stress and anxiety symptoms were reported. Since the CKD diagnosis, 47% of parents perceived a deterioration of their own health, and 40% reduced work on a structural basis. Higher levels of stress, anxiety, and depression symptoms were associated with a more negative perception of own health, and more child medical comorbidities and school absence. CONCLUSIONS: This study showed higher levels of parenting stress and anxiety symptoms in parents of children with CKD compared with parents of healthy children. This was associated with a less positive perception of their own health, especially if the child had more medical comorbidities or more absence from school. Psychosocial interventions to reduce the parental burden should be integrated in the standard care of pediatric nephrology departments.

Addressing the psychosocial aspects of transition to adult care in patients with cystinosis.

Cystinosis is a rare autosomal-recessive lysosomal storage disease that progressively affects multiple organs beginning with the kidneys. Patients require lifelong multidisciplinary care for the management of kidney disease and progressive extra-renal manifestations, and thus, they are especially fragile and vulnerable during transition from pediatric to adult care. Previous documents have provided guidance to help the medical transition of these highly burdened patients. Patients and their families often experience great psychological distress and face significant social challenges; for these reasons, they often need help from psychologists, social workers, and other psychosocial professionals. Due to the rarity of the disease, most psychosocial professionals have no expertise in this disorder and require advice. To this end, a steering committee (SC) composed of six experts, including pediatric nephrologists, psychologists, and social workers with experience in the care for patients with cystinosis, have identified and addressed seven key questions related to psychosocial challenges of the disease and the burden of treatment. Ten additional international experts (the extended faculty, EF) were invited to answer these questions. Since robust evidence is lacking, as in many rare diseases, conclusions were based on collective agreement between members of the SC and the EF, and the consolidated answers were summarized into expert opinion statements. The present document contains information on the concerns and psychosocial burden of patients with cystinosis and of their caregivers, and provides practical advice for timely and appropriate support to facilitate the transition to adult care.

Illness-related parental stress and quality of life in children with kidney diseases.

BACKGROUND: This cross-sectional study investigated quality of life (QoL) and illness-related parental stress in children with kidney diseases by (1) comparing mean levels of these two variables between several kidney disease categories; (2) exploring correlations between QoL and parental stress; and (3) describing which disease category reports lowest QoL and highest parental stress. METHODS: We included 295 patients with a kidney disease (0-18 years) and their parents, followed at 6 reference centers for pediatric nephrology. Children's QoL was assessed by the PedsQL™ 4.0 Generic Core Scales, and illness-related stress by the Pediatric Inventory for Parents. All patients were divided into 5 kidney disease categories according to the multidisciplinary care program criteria prescribed by the Belgian authorities: (1) structural kidney diseases, (2) tubulopathies and metabolic diseases, (3) nephrotic syndrome, (4) acquired diseases with proteinuria and hypertension, and (5) kidney transplantation. RESULTS: Child self-reports showed no differences in QoL between kidney disease categories, in contrast to parent proxy reports. Parents of transplant patients reported lower QoL in their child and more parental stress compared with the 4 non-transplant categories. QoL and parental stress were negatively correlated. Lowest QoL and highest parental stress scores were mainly found in transplant patients. CONCLUSIONS: This study showed lower QoL and higher parental stress in pediatric transplant patients compared with non-transplants, based on parent reports. Higher parental stress is associated with worse QoL in the child. These results highlight the importance of multidisciplinary care for children with kidney diseases, with special attention to transplant patients and their parents. A higher resolution version of the Graphical abstract is available as Supplementary information.

Prevention of anxiety and depression in cystic fibrosis.

PURPOSE OF REVIEW: Anxiety and depression (A&D) are common in cystic fibrosis (CF). This review defines A&D in the context of CF and examines our current knowledge about A&D, the impact on CF, treatment and illness trajectory and explores potential areas for prevention. RECENT FINDINGS: CF and A&D are interrelated. The CF diagnosis, symptoms and treatment may trigger symptoms of A&D, leading in some patients, to a clinical diagnosis of anxiety or depression. In return A&D impacts CF, potentially worsening the prognosis, decreasing treatment adherence and overall well being. Research shows how prevention is often imbedded in treatment programmes, for example in cognitive behavioural therapies or motivational interviewing. Strategies that may help to prevent the onset of clinical A&D or an increase in symptoms include the implementation of psychoeducation; techniques to enhance coping and resilience; building social support networks; increasing patients' physical exercise; and potentially, the implementation of e-health in day-to-day care. SUMMARY: To date, most A&D interventions focus on psychotherapeutic treatments, with preventive measures imbedded in programmes. The challenge lies in the improvement of our knowledge and implementation of preventive strategies to advance our care for patients with CF and to avoid clinical A&D.

Renal Replacement Therapy in children with severe developmental disability: guiding questions for decision-making.

Whether to initiate or to withhold Renal Replacement Therapy (RRT) in children with severe developmental disability (DD) remains a topic of intense debate. The present study investigated the opinion of professionals on this difficult issue and proposed a checklist with guiding questions for decision-making. Clinicians affiliated to different organizations involved in pediatric nephrology worldwide were invited to respond to a web-based survey. This survey focused on the collection of demographic data of the respondents together with their opinion concerning the decision-making regarding RRT in a particular case and for children with severe DD in general. A total of 286 professionals responded to the survey. Sixty-six percent supported initiating RRT in the child of the case report, with pre-emptive transplantation being the preferred modality. Important arguments pro RRT initiation in children with severe DD in general were parental preference, decrease of suffering, and improvement of survival and quality of life. Important contraindications included low IQ, severe comorbidities, and inability of the patient to take medication or for the family to provide sufficient care.Conclusion: The present study presents an inventory on the opinions of health care professionals involved in RRT in children regarding the treatment of children with DD and assists in the decision-making process by identifying important medical and psychosocial arguments for initiating or withholding RRT in severe DD patients. What is Known: •Renal Replacement Therapy (RRT) in children with severe developmental disability (DD) is a topic of intense debate. •Previous studies on the opinion of professionals mainly focused on the use of IQ as an argument in the decision-making whether or not starting RRT. What is New: •The present study investigated the opinion of professionals with regard to considering initiation or withholding RRT in children with severe DD and identified medical and psychosocial arguments playing a role in the decision-making process. •Based on these arguments, a checklist with guiding questions for decision-making is proposed.

Dimensions of Temperament and Depressive Symptoms: Replicating a Three-Way Interaction.

High negative emotionality (NE), low positive emotionality (PE), and low self-regulatory capacity (i.e., effortful control or EC) are related to depressive symptoms and furthermore, may moderate one another's relations to such symptoms. Indeed, preliminary evidence suggests they may operate in a three-way interaction (Dinovo & Vasey, 2011), but the replicability of that finding remains unknown. Therefore, we tested this NExPExEC interaction in association with depressive symptoms in 5 independent samples. This interaction was significant in 4 of the 5 samples and a combined sample and approached significance in the fifth sample. In contrast, the NExPExEC interaction was unrelated to general anxious symptoms and thus may be specific to symptoms of depression. Implications, directions for future research, and limitations are discussed.

Reactive and self-regulatory temperament dimensions in relation to alcohol use in adolescence.

The present study investigated the cross-sectional relations of reactive [Behavioral Inhibition System (BIS) and Behavioral Activation System (BAS)] and self-regulatory [effortful control (EC)] temperament dimensions with alcohol use in a community sample of adolescents aged 14 to 20years. Participants completed the BIS/BAS Scales (Carver & White, 1994), the Effortful Control Scale of the Early Adolescent Temperament Questionnaire Revised (EATQ-R; Ellis & Rothbart, 2001) and a subset of questions based on from the Teen Addiction Severity Index (T-ASI; Kaminer, Bukstein, & Tarter, 1991). Age of first use and quantity of alcohol use were predicted by the unique effect of BAS Fun Seeking. Frequency and quantity of alcohol use were predicted by the BAS Fun SeekingxEC interaction: High BAS Fun Seeking was related to frequency and quantity of alcohol use only if EC was low. Frequency of alcohol use was also predicted by the BAS DrivexEC interaction, but simple slope analysis revealed that the slopes were not significant, both at low EC and at high EC. The findings of the present study confirm and extend previous research and add to the growing literature of temperamental vulnerability to alcohol use in young populations.