Equity factors in pediatric transplant listing: Initial findings from a single center review.

BACKGROUND: In order to improve transparency within the patient selection process, a transplant listing advisory committee was formed within the Boston Children's Hospital Pediatric Transplant Center. Its mission is to promote equity in access to organ transplantation by ensuring that the institutional transplant selection criteria are fair, unbiased, and nondiscriminatory. The committee conducts comprehensive case and data review of individual characteristics and reviews in aggregate to identify potential systems bias. METHODS: Charts for 256 patients evaluated for transplant from 3/2016 to 3/2019 were reviewed. Among these, 64 (25%) patients were declined for transplant. Univariate logistic regression analysis was used to identify demographic variables and vulnerable status factors associated with being declined. Odds ratios (OR) are reported. RESULTS: Among all patients, median age was 8.5 years and 58% were male. Asian patients were more likely to be declined than White patients (OR = 5.3, Wald p = .007). Socioeconomic factors that affected likelihood of listing decline included concerns for caregivers' ability to manage and understand care requirements (OR = 3.8, p = .011), caregiver employment status (OR = 1.9, p = .042), and use of public assistance programs (OR = 2.2, p = .05). Patients with severe neurodevelopmental delay were more likely to be declined for listing (OR = 3.7, p = .019). CONCLUSION: This analysis identified areas of potential bias related to race, socioeconomic status, and neurodevelopmental delay where initiatives can be targeted. Advisory committees are an important aspect of evaluating equity in transplant center selection policy and practice.

A systematic review of social determinants of health in pediatric organ transplant outcomes.

BACKGROUND: Equitable access to pediatric organ transplantation is critical, although risk factors negatively impacting pre- and post-transplant outcomes remain. No synthesis of the literature on SDoH within the pediatric organ transplant population has been conducted; thus, the current systematic review summarizes findings to date assessing SDoH in the evaluation, listing, and post-transplant periods. METHODS: Literature searches were conducted in Web of Science, Embase, PubMed, and Cumulative Index to Nursing and Allied Health Literature databases. RESULTS: Ninety-three studies were included based on pre-established criteria and were reviewed for main findings and study quality. Findings consistently demonstrated disparities in key transplant outcomes based on racial or ethnic identity, including timing and likelihood of transplant, and rates of rejection, graft failure, and mortality. Although less frequently assessed, variations in outcomes based on geography were also noted, while findings related to insurance or SES were inconsistent. CONCLUSION: This review underscores the persistence of SDoH and disparity in equitable transplant outcomes and discusses the importance of individual and systems-level change to reduce such disparities.

Psychotropic medication use trends in a large pediatric and young adult solid organ transplant population.

INTRODUCTION: This study describes psychotropic medication use in a pediatric and young adult solid organ transplant population. METHODS: We conducted a retrospective review of the lifetime incidence of psychotropic medication use and associated characteristics in patients seen over a 6-year period at a large pediatric transplant center utilizing univariate and multivariate statistical analyses. RESULTS: The lifetime incidence of psychotropic medication use was 36.5% in 393 patients. Transplant psychiatry provided psychopharmacological consultation to 21.9% of patients. Controlling for age and sex, there were significant associations between psychotropic use and thoracic organ disease (heart/lung) (AOR = 2.14; 95% CI: 1.2-3.8; P = 0.01), White race (P = 0.0002), histories of depressive/mood disorders (AOR = 3.68; 95% CI: 1.8-7.7; P = 0.0005), attention/learning disorders (AOR = 3.30; 95% CI: 1.6-6.9; P = 0.001), acute and post-traumatic stress disorders (AOR = 10.54; 95% CI: 2.6-42.8; P = 0.001), and experiencing bullying (AOR = 2.16; 95% CI: 1.03-4.55; P = 0.04). In unadjusted tests, significant associations were found between lifetime psychotropic usage and patient anxiety history (OR = 2.26; 95% CI: 1.5-3.5; P = 0.0002), end-of-life disease progression (OR = 3.04; 95% CI: 1.7-5.4; P = 0.0002), family psychiatric history (OR = 2.17; 95% CI: 1.4-3.4; P = 0.0007), and adherence concerns (OR = 2.67; 95% CI: 1.7-4.1; P < 0.0001). DISCUSSION: The lifetime incidence of psychotropic medication use among pediatric and young adult transplant patients is substantial. Patients with thoracic organ disease, end-of-life illness, individual/family psychiatric histories, trauma, and bullying histories have particularly high rates. Integrating child psychiatry as part of pediatric transplant teams should be an important consideration for the care of these patients.

Behavioral health care in solid organ transplantation in a pediatric setting.

This study examined the demographic, medical, and psychiatric characteristics of transplant patients across organ groups seen by transplant psychology/psychiatry clinicians at a pediatric institution between 2008 and 2014. Chart reviews were conducted to better understand the behavioral health care provided to SOT patients and the role of transplant-dedicated psychology and psychiatry clinicians. Transplant psychology/psychiatry was consulted a total of 1060 times on 399 unique SOT patients over a 6-year period. There were no significant differences in the distribution of age, sex, or ethnicity across organ groups. Common reasons for a consultation included pretransplant evaluation, anxiety, depression, agitation, and general coping. Rates varied by organ groups. Twenty percent of consults also received a psychopharmacological evaluation, with differences in rates between organ groups. Roughly one-third of patients required high frequency of transplant psychology/psychiatry involvement. Lung and heart patients had the highest utilization. Psychiatric diagnosis rates were identified, with adjustment (41.0%) and anxiety disorders (30.1%) being the most common. Pediatric psychology and psychiatry clinicians offer developmentally informed biopsychosocial approaches to treatment for SOT patients. Clarifying the prevalence and nature of behavioral health care provided by organ group can help pediatric providers better understand appropriate psychosocial interventions and resources utilized by this patient population and ultimately guide centers toward a more unified approach to care.

Ready, set, relax: biofeedback-assisted relaxation training (BART) in a pediatric psychiatry consultation service.

BACKGROUND: Biofeedback-assisted relaxation training (BART) can treat several common pediatric presentations, including chronic pain and anxiety. Its effectiveness, applicability to a variety of conditions, and equipment portability make it an ideal treatment approach for use in an inpatient pediatric consultation-liaison service. OBJECTIVE: Since there is a paucity of published research on the utility of BART in this setting, we studied pediatric patients (≥8y), medically-admitted to Boston Children's Hospital, and referred to the Psychiatry Consultation Service for assistance in managing pain, anxiety or both. METHODS: The patients received at least 1 session of BART. In addition to heart rate variability and skin temperature data collection, participants completed the Wong-Baker FACES Pain Rating Scale and a brief mood/affective state rating scale (Youth Feelings Scale) before and after the BART sessions. RESULTS: A total of 152 sessions were conducted with 66 patients across 11 referring services. BART was successfully used 61% of the time on the medical floor with common barriers involving patient unavailability or refusal. The patients completed an average of 1.57 sessions per admission. The post-BART session pain and mood ratings significantly improved over the presession ratings. Patients with both pain and anxiety reported the greatest changes across sessions in comparison with those with only pain or anxiety. Higher heart rate variability was observed in the "pain-only" group. CONCLUSIONS: The use of BART in a consultation-liaison setting demonstrates promising utility in working with patients with pain, anxiety, or a combination of symptoms. BART was well-received by patients with subjective reports of benefit across sessions.

Feasibility and impact of multidisciplinary training of an evidence-based intervention within a pediatric psychiatry consultation service.

OBJECTIVE: To train clinicians on a multidisciplinary pediatric consultation-liaison (CL) psychiatry service to administer an evidence-based intervention, biofeedback-assisted relaxation training (BART), in the inpatient medical setting and obtain their opinions about BART's utility and feasibility in the CL setting. METHODS: Attendings and trainees on a multidisciplinary pediatric CL service received 3 h of BART training and completed a 10-item questionnaire designed to assess opinions about BART at two time points: after training but prior to using the intervention with patients and again 3 months after implementing the intervention in their clinical practice. RESULTS: Nineteen clinicians administered BART with 28 patients across the study period, and clinicians rated BART positively after training and significantly more positively after utilizing BART in the clinical setting. From post-training to post-implementation, trainees reported significant increases in their opinions that BART increased parent and patient receptiveness to psychiatric consultation (p<0.05) and attendings reported significant increases in their opinions that BART enhanced clinical intervention (p<0.05). CONCLUSIONS: BART training on a multidisciplinary CL service was well received by clinicians and patients and may enhance psychiatry trainees' repertoire of cognitive-behavioral and evidence-based interventions.

Effects of videogame distraction using a virtual reality type head-mounted display helmet on cold pressor pain in children.

OBJECTIVE: To test whether a head-mounted display helmet enhances the effectiveness of videogame distraction for children experiencing cold pressor pain. METHOD: Forty-one children, aged 6-14 years, underwent one or two baseline cold pressor trials followed by two distraction trials in which they played the same videogame with and without the helmet in counterbalanced order. Pain threshold (elapsed time until the child reported pain) and pain tolerance (total time the child kept the hand submerged in the cold water) were measured for each cold pressor trial. RESULTS: Both distraction conditions resulted in improved pain tolerance relative to baseline. Older children appeared to experience additional benefits from using the helmet, whereas younger children benefited equally from both conditions. The findings suggest that virtual reality technology can enhance the effects of distraction for some children. Research is needed to identify the characteristics of children for whom this technology is best suited.

Changes in diet and physical activity following BRCA1/2 testing.

The present study prospectively examined change in diet and physical activity behaviors in 115 women undergoing BRCA1/2 gene testing (46 mutation positive, 46 uninformative and 23 definitive negative). Participants completed measures of diet and physical activity at three time points: prior to genetic testing and 1-and 6-months after receipt of genetic test results. Repeated measures analyses examined between-and within-group differences among participants who received BRCA1/2 positive, uninformative, or definitive negative results. There were no within-group differences across time points or between-group differences at any time point for diet or physical activity. Most participants, overall and within each group, did not meet recommended guidelines for fruit and vegetable and dietary fat consumption. These findings suggest that women do not make spontaneous changes in diet and physical activity following the genetic testing and counseling process. A brief intervention may be necessary for patients who are interested in making changes in modifiable risk factors to complement more definitive risk-reduction strategies.

Evidence-based assessment of pediatric pain.

OBJECTIVE: To conduct an evidence-based review of pediatric pain measures. METHODS: Seventeen measures were examined, spanning pain intensity self-report, questionnaires and diaries, and behavioral observations. Measures were classified as "Well-established," "Approaching well-established," or "Promising" according to established criteria. Information was highlighted to help professionals evaluate the instruments for particular purposes (e.g., research, clinical work). RESULTS: Eleven measures met criteria for "Well-established," six "Approaching well-established," and zero were classified as "Promising." CONCLUSIONS: There are a number of strong measures for assessing children's pain, which allows professionals options to meet their particular needs. Future directions in pain assessment are identified, such as highlighting culture and the impact of pain on functioning. This review examines the research and characteristics of some of the commonly used pain tools in hopes that the reader will be able to use this evidence-based approach and the information in future selection of assessment devices for pediatric pain.

Active and passive distraction using a head-mounted display helmet: effects on cold pressor pain in children.

OBJECTIVE: The current study tested the effectiveness of interactive versus passive distraction that was delivered via a virtual reality type head-mounted display helmet for children experiencing cold pressor pain. DESIGN: Forty children, aged 5 to 13 years, underwent 1 or 2 baseline cold pressor trials followed by interactive distraction and passive distraction trials in counterbalanced order. MAIN OUTCOME MEASURES: Pain threshold and pain tolerance. RESULTS: Children who experienced either passive or interactive distraction demonstrated significant improvements in both pain tolerance and pain threshold relative to their baseline scores. In contrast, children who underwent a second cold pressor trial without distraction showed no significant improvements in pain tolerance or threshold. CONCLUSION: Although both distraction conditions were effective, the interactive distraction condition was significantly more effective. Implications for the treatment of children's distress during painful medical procedures are discussed.

The impact of food allergy on the daily activities of children and their families.

BACKGROUND: Food allergy affects a significant number of children, and its management requires considerable time and vigilance. OBJECTIVE: To determine the impact of food allergy on the daily activities of food allergic children and their families. METHODS: Caregivers of food allergic children from a university-based allergy practice completed a questionnaire that evaluated their perception of the impact of their child's food allergy on family activities. RESULTS: Of the 87 families who completed the study, more than 60% of caregivers reported that food allergy significantly affected meal preparation and 49% or more indicated that food allergy affected family social activities. Forty-one percent of parents reported a significant impact on their stress levels and 34% reported that food allergy had an impact on school attendance, with 10% choosing to home school their children because of food allergy. The number of food allergies had a significant impact on activity scores, but the existence of comorbid conditions such as asthma and atopic dermatitis did not significantly affect the results. CONCLUSIONS: Food allergy has a significant effect on activities of families of food allergic children. Further study is needed to determine more detailed effects of food allergy on parent-child interactions and development.

Development of an Interactive Decision Aid for Female BRCA1/BRCA2 Carriers.

Shared decision making between patients and providers is becoming increasingly common, particularly when there is no clear preferred course of action. As a result, decision aids are being adopted with growing frequency and have been applied to many medical decision-making issues. One such issue where there is uncertainty is breast cancer risk management among BRCA1/BRCA2 carriers. We present the development of a CD-ROM decision aid to facilitate risk management decision making in this population. Our decision aid was developed with the intention of providing it through a randomized clinical trial. The CD-ROM is a multimedia, interactive intervention which provides information about breast cancer, risks associated with BRCA1 and BRCA2 mutations, risk management options for hereditary breast cancer, and a breast cancer risk management decision aid. The goal of this CD-ROM, offered as an adjunctive intervention, is to reduce decisional conflict and psychological distress and improve comprehension of risk information, decisional satisfaction, medical adherence, and quality of life for this population of women at increased risk for breast cancer.