Common mental health conditions and considerations in pediatric chronic kidney disease.

The mental health of youth with chronic kidney disease (CKD) has been increasingly recognized as an area of clinical need. The development of mental health concerns is influenced by a range of physiological, psychological, and environmental factors. Some of these factors are common across child development, but some are more unique to youth with CKD. Mental health concerns are associated with increased risk for a range of poor medical outcomes (e.g., adherence, risk of transplant rejection) and quality of life concerns. In this educational review, we discuss the current evidence base regarding the development of mental health concerns in youth with CKD. The review covers multiple domains including mood and anxiety disorders, traumatic stress, and neurodevelopmental disorders. Estimated prevalence and hypothesized risk factors are outlined, and the potential impact of mental health on medical care and functional outcomes are reviewed. Finally, we introduce options for intervention to support positive mental health and offer recommendations for building access to mental health care and improving the mental health education/training of medical professionals.

Understanding caregiver burden with accessing sickle cell care in the Midwest and their perspective on telemedicine.

BACKGROUND: Survival for children with sickle cell disease (SCD) has improved significantly. However, patients with SCD still encounter several impediments to accessing adequate healthcare. Rural and medically underserved areas, such as parts of the Midwest, can exacerbate these barriers, separating children with SCD from subspecialists even further. Telemedicine has been a means to close these gaps in care for children with other special healthcare needs, but few studies have discussed how caregivers of children with SCD perceive its use. METHODS: The objective of this study is to understand the experiences of caregivers of pediatric SCD patients in a geographically diverse area in the Midwest in accessing care, and their perspectives of telemedicine. Caregivers of children with SCD completed an 88-item survey via a secured REDCap link either in-person or via secure text. Descriptive statistics (means, medians, ranges, frequencies) were performed for all responses. Univariate chi square tests were performed to analyze associations, particularly with telemedicine responses. RESULTS: The survey was completed by 101 caregivers. Nearly 20% of families traveled more than 1 hour to reach the comprehensive SCD center. Other than their SCD provider, caregivers reported their child having at least 2 other healthcare providers. Most barriers caregivers identified were financial or resource based. Almost a quarter of caregivers expressed feeling as though these barriers impacted their and/or their child's mental health. Ease of access to team members, as well as scheduling, were common facilitators of care cited by caregivers. The majority were willing to participate in telemedicine visits, regardless of how far they lived from the SCD center, though many noted aspects requiring adaptation. CONCLUSION: This cross-sectional study describes barriers to care experienced by caregivers of children with SCD, regardless of proximity to an SCD center, as well as caregiver perceptions of the usefulness and acceptability of telemedicine for SCD care.

Caregiver experiences with accessing sickle cell care and the use of telemedicine.

BACKGROUND: Sickle cell disease (SCD) is associated with a wide range of complications. However, a multitude of barriers prevent SCD patients from receiving adequate healthcare, including difficulties with transportation and lack of provider knowledge about disease sequelae. Importantly, studies have demonstrated the benefits of telemedicine in addressing barriers to healthcare. While previous studies have identified barriers to care through quantitative methods, few studies have explored barriers which affect the pediatric SCD patient population in the Midwest, wherein the geographical landscape can prohibit healthcare access. Furthermore, few studies have established acceptability of telemedicine among caregivers and patients with SCD. METHODS: This study aims to increase understanding of barriers to care and perceptions of telemedicine by caregivers of pediatric SCD patients in a medically under-resourced area in the Midwest. Researchers conducted semi-structured interviews with caregivers of children with SCD. The interviews were audio-recorded and transcribed. Thematic analyses were performed. RESULTS: Researchers interviewed 16 caregivers of 15 children with SCD. Thematic analyses of the interview transcripts revealed four broad themes regarding caregiver burden/stress, both facilitators and barriers to SCD healthcare, and general thoughts on the acceptability/usefulness of telemedicine. CONCLUSION: This qualitative study describes common burdens faced by caregivers of SCD, barriers to and facilitators of SCD care in the Midwest, and caregiver perceptions of the usefulness and efficacy of telemedicine for SCD care.

Sleep quality is associated with psychosocial functioning and health-related quality of life in pediatric transplant recipients.

This study examined patient-reported sleep quality in a single-center cross-sectional sample of adolescents with solid organ transplants and evaluated associations between sleep quality, psychosocial functioning (ie, depression/anxiety symptoms), and HRQOL. Health disparities associated with minority race/ethnicity and socioeconomic variables were also examined. Sixty-nine adolescents (M = 16.51 years; SD = 1.63) who received a solid organ transplant (kidney: n = 25; liver: n = 24; heart: n = 20) completed self-report measures of sleep quality, psychosocial functioning, and HRQOL. Adolescent transplant recipients endorsed significantly lower levels of sleep quality (ie, falling asleep) compared with previously published norms of healthy peers (t = -3.60; P ≤ .001). Higher sleep quality was significantly associated with fewer anxiety and depressive symptoms (r = -.31 to -.40), and higher physical and psychosocial HRQOL (r = .33-.43). Adolescents from minority backgrounds had significantly worse sleep quality compared with non-Hispanic Whites. Adolescent transplant recipients, particularly those from minority backgrounds, may be at increased risk for experiencing poor sleep quality. Suboptimal sleep is a risk factor for higher levels of anxiety and depressive symptoms, as well as lower levels of physical and psychosocial HRQOL. Sleep is an important modifiable factor that, if improved, may contribute to lower anxiety/depressive symptoms and better HRQOL in adolescent transplant recipients.

Executive Functioning, Barriers to Adherence, and Nonadherence in Adolescent and Young Adult Transplant Recipients.

OBJECTIVE : To evaluate levels of executive functioning in a sample of adolescent and young adult (AYA) transplant recipients, and to examine executive functioning in association with barriers to adherence and medication nonadherence. METHOD : In all, 41 caregivers and 39 AYAs were administered self- and proxy-report measures. RESULTS : AYA transplant recipients have significant impairments in executive functioning abilities. Greater dysfunction in specific domains of executive functioning was significantly associated with more barriers to adherence and greater medication nonadherence. CONCLUSION : AYA transplant recipients are at increased risk for executive dysfunction. The assessment of executive functioning abilities may guide intervention efforts designed to decrease barriers to adherence and promote developmentally appropriate levels of treatment responsibility.

Psychosocial supports within pediatric nephrology practices: A pediatric nephrology research consortium survey.

BACKGROUND: The landscape of available psychosocial services within pediatric nephrology care is poorly characterized. However, the effects of kidney disease on emotional health and health-related quality of life are well documented, as is the impact of social determinants of health on kidney disease outcomes. The objectives of this study were to assess pediatric nephrologists' perceptions of available psychosocial services and to elucidate inequities in access to psychosocial care. METHODS: A web-based survey was distributed to members of the Pediatric Nephrology Research Consortium (PNRC). Quantitative analyses were performed. RESULTS: We received responses from 49 of the 90 PNRC centers. With regards to dedicated services, social work was most commonly available (45.5-100%), followed by pediatric psychology (0-57.1%) and neuropsychology (0-14.3%), with no centers having embedded psychiatry. Availability of psychosocial providers was positively associated with nephrology division size, such that as center size increased, access to various psychosocial providers increased. Notably, the majority of respondents indicated that perceived need for psychosocial support exceeds that which is currently available, even at centers with higher levels of current support. CONCLUSIONS: Within the US, there is wide variability in the availability of psychosocial services within pediatric nephrology centers despite a well-documented necessity for the provision of holistic care. Much work remains to better understand the variation in funding for psychosocial services and in utilization of psychosocial professionals in the pediatric nephrology clinic, and to inform key best practices for addressing the psychosocial needs of patients with kidney disease.

The role of executive functioning in health self-management and the transition to adult health care among college students.

ObjectiveTo examine the role of executive functioning (EF) in health self-management and the transition to adult health care among college students. Participants: A total of 378 undergraduate students from a public university participated in the study. Methods: Participants reported on EF, health self-management skills, and their readiness to transition to adult care. Mediation analyses were conducted to evaluate indirect effects of EF on readiness to transition via health self-management skills. Results: Students with greater EF difficulties were less ready to transition to adult care. Specific aspects of health self-management (Medication management/Appointment keeping) mediated the relationship between EF and readiness to transition. Conclusion: EF is a key developmental aspect of health self-management and transition readiness. Assessing EF strengths/weaknesses in students with suboptimal health self-management skills may provide valuable information for informing the development of individually-tailored transition plans in university health centers, thereby enhancing developmentally appropriate care during the college years.

The role of executive functioning, healthcare management, and self-efficacy in college students' health-related quality of life.

Objective: Examine how executive functioning (EF), healthcare management, and self-efficacy relate to college students' health-related quality of life (HRQOL). Participants: Undergraduates completed questionnaires at baseline (Time 1; n = 387) and 18-24 months later (Time 2; n = 102). Methods: Participants reported on their EF and healthcare management skills at Time 1 and self-efficacy and mental and physical HRQOL at Time 2. Results: Students with fewer EF problems reported higher mental and physical HRQOL at both timepoints and those with higher healthcare management skills had higher mental and physical HRQOL at Time 1. Higher self-efficacy mediated the relation between EF and mental HRQOL, and the relation between healthcare management and mental HRQOL. Conclusions: Findings illustrate two potential pathways by which self-management, in healthcare settings or daily living, contributes to mental HRQOL during emerging adulthood. Assessing EF and healthcare management could help identify those at risk of low HRQOL and provide information that can inform interventions in college settings.

Different Demands, Same Goal: Promoting Transition Readiness in Adolescents and Young Adults With and Without Medical Conditions.

PURPOSE: This study aimed to examine differences in transition readiness, self-involvement and parental involvement in completing medical tasks, and general self-efficacy between a sample of older adolescents and young adults (AYAs) with medical conditions and a sample of healthy peers. Relations among these variables were also examined. METHODS: The sample included 494 AYAs (mean age = 19.30 years, standard deviation = 1.33) who reported on their levels of transition readiness, self-involvement and parental involvement in completing medical tasks, and general self-efficacy. RESULTS: AYAs with medical conditions reported significantly higher levels of transition readiness and self-involvement in completing medical tasks and lower levels of parent involvement in completing medical tasks than healthy peers. Parent involvement in completing medical tasks indirectly related to transition readiness through AYA self-involvement in completing medical tasks for both AYAs with medical conditions and healthy peers. CONCLUSIONS: AYAs with medical conditions appear to have greater transition readiness skills and demonstrate more independence in completing medical tasks than healthy peers. For AYAs with medical conditions and healthy peers, transition readiness appears to be enhanced as parents decrease their involvement in completing AYAs' medical tasks and AYAs increase self-involvement in completing these tasks. AYAs with medical conditions, as well as healthy peers, may benefit from programming delivered in primary care, specialty clinic, or educational settings that focuses on increasing AYAs' involvement in and responsibility for managing their health care.

Changes in Socio-Emotional and Behavioral Functioning After Attending a Camp for Children with Tourette Syndrome: A Preliminary Investigation.

Children and adolescents with Tourette syndrome are at risk for social, emotional, and behavioral difficulties that may negatively influence feelings of self-competence and attitudes toward having this diagnosis. Attending a camp for children with Tourette syndrome may facilitate improvements in overall socio-emotional and behavioral functioning and self-perception. The current study obtained data from 37 campers (76 % male, 24 % female) and 47 caregivers of campers to investigate changes in children's emotional and behavioral functioning, self-perception (i.e., social and general), attitudes towards having Tourette syndrome, and how different they felt from peers after attending a 1-week summer camp for youth with Tourette syndrome using a pre-post design. Results indicated that campers endorsed a significantly improved sense of social self-competence and more favorable attitudes toward having Tourette syndrome post-camp. Campers also tended to endorse feeling less different than peers at camp versus peers in general. Caregivers endorsed significantly less severe symptoms associated with Tourette syndrome for campers after attending camp. No pre-to-post-camp changes were observed for campers' levels of anxiety or obsessive-compulsive symptoms. These preliminary findings suggest that attending camp or having other opportunities to interact with similar peers may promote better perceptions of social self-competence, more favorable attitudes toward having Tourette syndrome, and a stronger sense of affiliation with peers for children with Tourette syndrome.

The Role of Self-Competence in Health-Related Quality of Life and Behavioral Functioning of Children with Tourette Syndrome.

OBJECTIVE: To evaluate self-competence, health-related quality of life (HRQOL), and emotional/behavioral functioning in children with Tourette syndrome (TS) compared to normative data and to examine self-competence as a potential protective factor against poorer HRQOL and emotional/behavioral outcomes in this population. METHOD: Thirty-nine children between the ages of 8 and 17 years and 72 caregivers participated in this study. Participants completed measures of children's HRQOL, emotional/behavioral functioning, and self-competence. RESULTS: Participants reported significantly lower levels of emotional/behavioral functioning and HRQOL compared with norms of healthy children. No significant differences were found in domains of perceived self-competence. Social and general self-competence domains were significantly and positively correlated with most emotional and behavioral outcomes examined. Only social self-competence was significantly correlated with domains of HRQOL. CONCLUSION: Self-competence, particularly in the social realm, may play a protective role against lower HRQOL and worse emotional and behavioral outcomes in children with TS. Children with this condition may benefit from self-competence-promoting interventions targeting children's perceptions of their own abilities.

Health-related quality of life and psychosocial functioning in children with Tourette syndrome: parent-child agreement and comparison to healthy norms.

This study aimed to evaluate the degree of agreement between parent proxy- and child self-report on measures of child psychosocial functioning and health-related quality of life in children with Tourette syndrome. Participants included 28 children with Tourette syndrome and their parents. All participants provided ratings of children's level of quality of life and psychosocial functioning. Results revealed strong, positive relationships between child self- and parent proxy-reports on all quality of life and psychosocial functioning domains. Parents perceived significantly higher levels of depression compared to their children, whereas children reported significantly lower Physical quality of life compared to their parents. Results suggest that assessment of quality of life and psychosocial functioning should include multiple reporters whenever feasible. Caution should be used when exclusively relying on parent proxy-reports of quality of life and psychosocial functioning, as these reports may not accurately reflect children's difficulties or perceptions of their functioning.