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.

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.

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.