The mental health profiles of pediatric organ transplant recipients.

BACKGROUND: Solid organ transplantation is the indicated treatment for children with end-stage organ failure. Little is known about the impact of organ transplantation on pediatric transplant recipients' mental health. Symptoms of medical procedure and generalized anxiety, post-traumatic stress, and depression may emerge, despite the successful restoration of organ function. METHODS: We examined symptoms of anxiety, depression, trauma, and medical procedure anxiety-specifically, fear and avoidance of needles-in youth who had received a kidney, liver, or heart transplant. Parent-report on child mental health symptoms was also collected. RESULTS: Data were obtained for 56 youth. Most children did not endorse clinically significant symptoms of depression. In contrast, 20% of parents reported symptoms of depression in their child that exceeded clinical cutoffs. Parents also reported higher levels of anxiety in their children than did the children themselves. Indeed, on average, children reported lower levels of depression and anxiety than would be expected in a general population. On a trauma measure, 22.6% of youths' scores were above clinical cutoffs, with girls scoring higher than boys. Finally, 10.9% of children stated that they attempted to avoid needles because of fear. Once again, girls reported higher needle fear scores than boys and younger patients reported experiencing higher levels of needle fear. CONCLUSIONS: Anxiety, depression, post-traumatic stress, and needle fear are important psychological parameters that should be considered in the evaluation of pediatric patients with solid organ transplant, as part of their routine post-transplant care.

Self-reported physical activity and lack of association with health-related quality of life in a pediatric solid-organ transplant population.

BACKGROUND: Physical activity (PA) has been shown to have benefits, including improving health-related quality of life (HRQOL). However, there are few and conflicting studies assessing PA and its relationship with HRQOL in a pediatric solid-organ transplant (SOT) population. The aim of this study was to assess whether overall HRQOL was associated with PA and to determine whether that association was independent of other baseline and contemporaneous clinical and demographic indicators. METHODS: A retrospective cross-sectional review was performed on 55 pediatric transplant patients (13 heart, 27 kidney, and 15 liver transplant). PA was measured by PAQ-C/PAQ-A, and HRQOL was measured using PedsQL. Demographics, baseline, and contemporaneous data were collected. RESULTS: There were no significant differences in baseline and contemporaneous characteristics between heart, kidney, and liver transplant recipients. SOT recipients were 15.0 (11.0-18.0) years old at completion of surveys. Median PAQ score was 2.3 (1.6-3.2), PedsQL total score was 77 (65-91), and PedsQL physical functioning score was 88 (72-97). The PedsQL total score was not significantly associated with PAQ score. The PAQ score was significantly associated with physical functioning subscore of the PedsQL (r = 0.37, p < 0.01). Higher physical functioning score was associated with time since transplant (r = 0.29, p = 0.031). CONCLUSION: Our SOT cohort has a HRQOL similar to other chronic conditions and higher than previous reported HRQOL in pediatric SOT populations. Higher levels of PA and longer time since transplant are associated with higher physical functioning scores.

Post-traumatic stress as a determinant of quality of life in pediatric solid-organ transplant recipients.

Living with end-stage organ failure is associated with an accumulation of traumatic medical events, and despite recovery after solid-organ transplantation (SOT), many children continue to exhibit lower quality of life (QOL). Few studies have examined the relationship between post-traumatic stress disorder (PTSD) and QOL among pediatric SOT recipients. We conducted a retrospective, cross-sectional review of 61 pediatric SOT recipients (12 heart, 30 kidney, and 19 liver) to evaluate the association of PTSD with self-reported QOL. PTSD was measured by the Child Trauma Screening Questionnaire (CTSQ), and QOL was measured using the PedsQL and PedsQL Transplant Module (PedsQL-TM) surveys. Demographics, baseline, and contemporaneous factors were tested for independent association. SOT recipients were 15.2 (12.1-17.6) years old at survey completion. Median CTSQ score was 2 (1-3), highest in kidney recipients, and 13% were identified as high risk for PTSD. Median PedsQL score was 83 (70-91) and significantly associated with the CTSQ score (r = -.68, p < .001). Median PedsQL Transplant Module score was 89 (83-95) and similarly associated with the CTSQ score (r = -.64, p < .001). Age at time of surveys and presence of any disability were also independently associated with PedsQL and PedsQL-TM, respectively. When adjusted for Emotional Functioning, CTSQ remained associated with PedsQL subscores (r = -.65, p < .001). Trauma symptoms are a major modifiable risk factor for lower self-perceived QOL and represent a potentially important target for post-transplant rehabilitation. Additional research is needed to understand the root contributors to PTSD and potential treatments in this population.

Distance Management of Spinal Disorders During the COVID-19 Pandemic and Beyond: Evidence-Based Patient and Clinician Guides From the Global Spine Care Initiative.

BACKGROUND: The COVID-19 pandemic has greatly limited patients' access to care for spine-related symptoms and disorders. However, physical distancing between clinicians and patients with spine-related symptoms is not solely limited to restrictions imposed by pandemic-related lockdowns. In most low- and middle-income countries, as well as many underserved marginalized communities in high-income countries, there is little to no access to clinicians trained in evidence-based care for people experiencing spinal pain. OBJECTIVE: The aim of this study is to describe the development and present the components of evidence-based patient and clinician guides for the management of spinal disorders where in-person care is not available. METHODS: Ultimately, two sets of guides were developed (one for patients and one for clinicians) by extracting information from the published Global Spine Care Initiative (GSCI) papers. An international, interprofessional team of 29 participants from 10 countries on 4 continents participated. The team included practitioners in family medicine, neurology, physiatry, rheumatology, psychology, chiropractic, physical therapy, and yoga, as well as epidemiologists, research methodologists, and laypeople. The participants were invited to review, edit, and comment on the guides in an open iterative consensus process. RESULTS: The Patient Guide is a simple 2-step process. The first step describes the nature of the symptoms or concerns. The second step provides information that a patient can use when considering self-care, determining whether to contact a clinician, or considering seeking emergency care. The Clinician Guide is a 5-step process: (1) Obtain and document patient demographics, location of primary clinical symptoms, and psychosocial information. (2) Review the symptoms noted in the patient guide. (3) Determine the GSCI classification of the patient's spine-related complaints. (4) Ask additional questions to determine the GSCI subclassification of the symptom pattern. (5) Consider appropriate treatment interventions. CONCLUSIONS: The Patient and Clinician Guides are designed to be sufficiently clear to be useful to all patients and clinicians, irrespective of their location, education, professional qualifications, and experience. However, they are comprehensive enough to provide guidance on the management of all spine-related symptoms or disorders, including triage for serious and specific diseases. They are consistent with widely accepted evidence-based clinical practice guidelines. They also allow for adequate documentation and medical record keeping. These guides should be of value during periods of government-mandated physical or social distancing due to infectious diseases, such as during the COVID-19 pandemic. They should also be of value in underserved communities in high-, middle-, and low-income countries where there is a dearth of accessible trained spine care clinicians. These guides have the potential to reduce the overutilization of unnecessary and expensive interventions while empowering patients to self-manage uncomplicated spinal pain with the assistance of their clinician, either through direct in-person consultation or via telehealth communication.

A Comparison of Maternal versus Paternal Nonverbal Behavior During Child Pain.

Parental behavior plays a significant role in children's pain response. Prior research has found generally no differences between mothers' and fathers' verbal behavior during child pain. This study compared mothers' and fathers' nonverbal behavior during child pain. Nonverbal behavior of mothers (n = 39) and fathers (n = 39) of 39 children (20 boys) aged 8 to 12 years who participated in the cold pressor task (counterbalanced once with each parent) was coded. A range of nonverbal behaviors were coded, including distraction, physical proximity, physical comfort/reassurance, procedure-related attending behavior, and fidgeting. The most common behaviors parents engaged in were fidgeting, procedure-related attending behaviors, and physical proximity. Results indicated that the types of nonverbal behavior parents engage in did not differ between mothers and fathers. However, children of mothers who engaged in more physical comfort/reassurance reported higher levels of pain intensity, and children of mothers who engaged in more procedure-related attending behaviors had lower pain tolerance. Further, both mothers and fathers who engaged in higher levels of verbal nonattending behaviors also engaged in lower levels of nonverbal procedure-related attending behaviors. These findings further support the importance of considering the influence of mothers and fathers in children's pain, and provide novel insights into the role of nonverbal behavior.

"He says, she says": a comparison of fathers' and mothers' verbal behavior during child cold pressor pain.

UNLABELLED: Mothers' behavior has a powerful impact on child pain. Maternal attending talk (talk focused on child pain) is associated with increased child pain whereas maternal non-attending talk (talk not focused on child pain) is associated with decreased child pain. The present study compared mothers' and fathers' verbal behavior during child pain. Forty healthy 8- to 12-year-old children completed the cold pressor task (CPT)-once with their mothers present and once with their fathers present in a counterbalanced order. Parent verbalizations were coded as Attending Talk or Non-Attending Talk. Results indicated that child symptom complaints were positively correlated with parent Attending Talk and negatively correlated with parent Non-Attending Talk. Furthermore, child pain tolerance was negatively correlated with parent Attending Talk and positively correlated with parent Non-Attending Talk. Mothers and fathers did not use different proportions of Attending or Non-Attending Talk. Exploratory analyses of parent verbalization subcodes indicated that mothers used more nonsymptom-focused verbalizations whereas fathers used more criticism (a low-frequency occurence). The findings indicate that for both mothers and fathers, verbal attention is associated with higher child pain and verbal non-attention is associated with lower child pain. The results also suggest that mothers' and fathers' verbal behavior during child pain generally does not differ. PERSPECTIVE: To date, studies of the effects of parental behavior on child pain have focused almost exclusively on mothers. The present study compared mothers' and fathers' verbal behavior during child pain. The results can be used to inform clinical recommendations for mothers and fathers to help their children cope with pain.

Behavioral interventions for sleep problems in children with autism spectrum disorders: current findings and future directions.

OBJECTIVE: To examine behavioral interventions for sleep problems in children with autism spectrum disorders (ASD). METHODS: A systematic review evaluating all published studies examining the effectiveness of behavioral treatment of sleep problems in children with ASD is presented. RESULTS: Based on the Chambless criteria for treatment efficacy, both standard extinction and scheduled awakenings met criteria for possibly efficacious interventions for sleep problems in children with ASD. Some positive outcomes have been reported, but there has not been enough research examining graduated extinction, faded bedtime, stimulus fading and chronotherapy to make any firm conclusions regarding treatment efficacy for children with ASD. CONCLUSIONS: Although more rigorous research is required in order for any sleep interventions for children with ASD to be considered probably efficacious or well-established, the current literature should be used to guide clinical decisions and direct research questions.

Case study: A case-series evaluation of a behavioral sleep intervention for three children with autism and primary insomnia.

OBJECTIVE: To assess the effectiveness of a manualized multi-component behavioral sleep intervention for children with autism spectrum disorder (ASD) and primary insomnia. METHODS: Three children (2 males and 1 female, aged 8-9 years) participated. The intervention consisted of a treatment handbook for parents; a distance treatment approach was used in which parents had weekly telephone contact with a therapist. The main behavioral strategies employed were Faded Bedtime with Response Cost and positive reinforcement. Within a case-series design, both subjective (parent-report questionnaires and sleep diaries) and objective (actigraphy) measures were used to record changes in children's sleep and daytime behavior. RESULTS: For all 3 children, mean sleep onset latency was reduced following the intervention. These improvements were generally maintained at follow-up 12 weeks later. CONCLUSIONS: The current study provides preliminary evidence for the effectiveness of a manualized behavioral sleep intervention program for improving insomnia in children with ASD.

Heritability of individual depressive symptoms.

BACKGROUND: In attempting to understand the familial basis of depression, most studies have focused on broad indices of depression and mood change. Broad indices may not adequately reflect the heritable basis of depression because of an unexplored possibility that not all symptoms are heritable. METHODS: The heritability of individual depressive symptoms was estimated from a sample of 343 general population volunteer twin pairs who completed the Beck Depression Inventory, the Centre for Epidemiologic Studies Depression Scale and items from the Symptom Checklist assessing depressive symptoms. Principal component analysis of the items extracted 14 factors that represented a wide range of depressive symptomatology. RESULTS: The factors were differentially heritable (h2 range: 0.0-35.0%). The factors that have a heritable basis described endogenous or physiological functions (e.g. loss of appetite, libido/pleasure). Symptoms such as negative affect or tearfulness did not have a heritable basis, suggesting that these symptoms are responses to negative life events/experiences or a learned association to changes in physiologic function. LIMITATIONS: Relatively small size of the sample. CONCLUSIONS: Depressive symptoms are differentially heritable and the results suggest that future research, such as genotyping studies, separates heritable and non-heritable symptom clusters prior to analysis. This will help identify which genes are involved and what their function in depression may be, leading to the development of more targeted and effective therapies.