Monitoring Practices After Pediatric Liver Transplantation.

OBJECTIVES: This study sought to understand the current monitoring practices after pediatric liver transplantation (LT), specifically regarding follow-up clinic visits, outpatient laboratory testing, protocol biopsies, and diagnostic imaging, and to identify potential center and provider characteristics associated with such practices. METHODS: A cross-sectional survey of pediatric LT providers at centers participating in the Society of Pediatric Liver Transplantation (SPLIT) registry was conducted from February 2020 to April 2021. RESULTS: The overall response rate was 79% (38/48 SPLIT centers), with the majority representing large volume centers (>10 LTs per year). Frequency of clinic visits and laboratory monitoring varied by center, but all centers decreased frequency after the first post-transplant year. The most common practice included an annual clinic visit and laboratory sampling every 2-3 months. Surveillance liver biopsy is seldom done during the first post-transplant year, while being routinely performed by 50% of centers after this time period. Centers forgoing surveillance biopsies assert that the results would likely not change management. Only 39% of centers have a hepatologist perform the liver biopsy while the remaining centers consult interventional radiology. Most diagnostic imaging is obtained only as needed. Routine abdominal ultrasounds were obtained by only 50% of responding centers after the first year post-transplant. CONCLUSIONS: SPLIT centers vary widely in the routine management of LTs after the first year post-transplant. While common themes emerge, future studies will be needed to connect protocols to outcomes to determine best practice.

Adherence to laboratory testing in pediatric liver transplant recipients.

BACKGROUND: The objectives of this retrospective cohort study are to describe rates of adherence to laboratory testing 6 months to 3 years post-liver transplantation and to examine demographic and clinical factors related to lab non-adherence and the association with medication adherence and clinical outcomes. METHODS: Medical chart review was conducted for 54 youth (mean age = 5.0 years) transplanted between 2003 and 2014. Lab adherence (≥80%) was measured as the proportion of completed labs out of the number expected. Immunosuppressant drug-level variability was used as a proxy for medication adherence. Clinical outcomes included LAR, viral infection, hospitalization, and non-routine clinic visit ≥12 months after transplant. RESULTS: Lab adherence decreased substantially over time. Single-parent household (aOR 5.86; 95% CI: 1.38-24.93) and no history of early rejection (aOR 3.96; 95% CI: 1.04-15.24) were independently associated with non-adherence. Lab non-adherence was significantly associated with medication non-adherence (P < .05), LAR (P = .02), and non-routine clinic visits (P = .03). CONCLUSIONS: Systematic monitoring of lab adherence may help in identifying pediatric LT recipients at increased risk for excessive healthcare use and adverse outcomes possibly due to poor disease management.

Association of Primary and Specialty Care Integration on Physician Communication and Cancer Screening in Safety-Net Clinics.

INTRODUCTION: Primary care providers who lack reliable referral relationships with specialists may be less likely than those who do have such relationships to conduct cancer screenings. Community health centers (CHCs), which provide primary care to disadvantaged populations, have historically reported difficulty accessing specialty care for their patients. This study aimed to describe strategies CHCs use to integrate care with specialists and examine whether more strongly integrated CHCs have higher rates of screening for colorectal and cervical cancers and report better communication with specialists. METHODS: Using a 2017 survey of CHCs in 12 states and the District of Columbia and administrative data, we estimated the association between a composite measure of CHC/specialist integration and 1) colorectal and cervical cancer screening rates, and 2) 4 measures of CHC/specialist communication using multivariate regression models. RESULTS: Integration strategies commonly reported by CHCs included having specialists deliver care on-site (80%) and establishing referral agreements with specialists (70%). CHCs that were most integrated with specialists had 5.6 and 6.8 percentage-point higher colorectal and cervical cancer screening rates, respectively, than the least integrated CHCs (P < .05). They also had significantly higher rates of knowing that specialist visits happened (67% vs 42%), knowing visit outcomes (65% vs 42%), receiving information after visits (47% vs 21%), and timely receipt of information (44% vs 27%). CONCLUSION: CHCs use various strategies to integrate primary and specialty care. Efforts to promote CHC/specialist integration may help increase rates of cancer screening.

Errors and Nonadherence in Pediatric Oral Chemotherapy Use.

BACKGROUND: Nonadherence and medication error both limit the effectiveness of oral chemotherapy. The overlap between nonadherence and medication error is not well studied in children, and interventions strategies differ for each. Our objective was to describe nonadherence and errors in children with cancer to inform future interventions. METHODS: Nonadherence was measured using two self-report tools. Medication error was measured using medication review and observation of administration at home. Two clinicians made judgments about whether each error also represented an episode of nonadherence. RESULTS: Of 72 errors detected in 92 home visits, 27 were also instances of nonadherence. For example, parents gave a child 1 tablet of mercaptopurine every day rather than the prescribed 1 tablet 5 days a week and ½ tablet on weekends. Clinician reviewers judged that family interventions and health system interventions would be most effective in preventing the errors and nonadherence identified in this population of children with cancer. DISCUSSION: The relationship between medication errors and nonadherence is not well described in the literature. Our data indicate that medication error and nonadherence coexist in the same population and in the same patient. Interventions should address both to most effectively support self-management.

Child Attitude Toward Illness Scale (CATIS): A systematic review of the literature.

OBJECTIVE: The objective of this study was to systematically review the literature utilizing the Child Attitude Toward Illness Scale (CATIS) as a measure of illness attitudes within pediatric chronic illness, including epilepsy, and provide recommendations for its use. This review includes an examination of the psychometric properties of the CATIS and the relationship between the CATIS and psychological, academic, behavioral, and illness variables. METHOD: Electronic searches were conducted using Medline and PsychINFO to identify twenty-two relevant publications. RESULTS: The CATIS was identified as a reliable and valid self-report assessment tool across chronic illnesses, including pediatric epilepsy. Although originally developed for children ages 8-12, the CATIS has demonstrated reliability and validity in youth ages 8-22. The CATIS scores were reliably associated with cognitive appraisal variables and internalizing symptoms. Initial support exists for the relation between illness attitudes and externalizing behavior, academic functioning, and psychosocial care needs. Mixed findings were reported with regard to the relation between illness attitudes and demographic and disease variables, as well as both social and family functioning. CONCLUSION: The CATIS is a psychometrically sound self-report instrument for measuring illness attitudes and demonstrates clinical utility for examining adjustment outcomes across chronic illnesses, particularly pediatric epilepsy.

Effect of Oral Lipid Matrix Supplement on Fat Absorption in Cystic Fibrosis: A Randomized Placebo-Controlled Trial.

Pancreatic enzyme therapy does not normalize dietary fat absorption in patients with cystic fibrosis and pancreatic insufficiency. Efficacy of LYM-X-SORB (LXS), an easily absorbable lipid matrix that enhances fat absorption, was evaluated in a 12-month randomized, double-blinded, placebo-controlled trial with plasma fatty acids (FA) and coefficient of fat absorption (CFA) outcomes. A total of 110 subjects (age 10.4 ±â€Š3.0 years) were randomized. Total FA increased with LXS at 3 and 12 months (+1.58, +1.14 mmol/L) and not with placebo (P = 0.046). With LXS, linoleic acid (LA) increased at 3 and 12 months (+298, +175 nmol/mL, P ≤ 0.046), with a 6% increase in CFA (P < 0.01). LA increase was significant in LXS versus placebo (445 vs 42 nmol/mL, P = 0.038). Increased FA and LA predicted increased body mass index Z scores. In summary, the LXS treatment improved dietary fat absorption compared with placebo as indicated by plasma FA and LA and was associated with better growth status.

Quality of Life Changes and Health Care Charges Among Youth With Epilepsy.

OBJECTIVE: To examine differences in health care charges following a pediatric epilepsy diagnosis based on changes in health-related quality of life (HRQOL). METHODS: Billing records were obtained for 171 youth [M (SD) age = 8.9 (4.1) years] newly diagnosed with epilepsy. Differences in health care charges among HRQOL groups (stable low, declining, improving, or stable high as determined by PedsQL(™) scores at diagnosis and 12 months after diagnosis) were examined. RESULTS: Patients with persistently low or declining HRQOL incurred higher total health care charges in the year following diagnosis (g = .49, g = .81) than patients with stable high HRQOL after controlling for epilepsy etiology, seizure occurrence, and insurance type. These relationships remained consistent after excluding health care charges for behavioral medicine or neuropsychology services (g = .49, g = .80). CONCLUSIONS: Monitoring HRQOL over time may identify youth with epilepsy at particular risk for higher health care charges.

How High-Need Patients Experiences the Health Care System in Nine Countries.

U.S. health care costs are disproportionately concentrated among older adults with multiple chronic conditions or functional limitations--a population often referred to as "high-need" patients. This analysis uses data from the Commonwealth Fund 2014 International Health Policy Survey of Older Adults to investigate health care use, quality, and experiences among high-need patients in nine countries compared with other older adults. High-need patients use a greater amount of health care services and also experience more coordination problems and financial barriers to care compared with other older adults. Disparities are particularly pronounced in the United States. The comparative success of other countries, particularly in reducing financial barriers to care, may be a product of policies that specifically target high-need patients. Similarly focusing on these populations in the U.S. and effectively managing their care may improve their health status while reducing overall costs.

How High-Need Patients Experience Health Care in the United States. Findings from the 2016 Commonwealth Fund Survey of High-Need Patients.

Issue: Health care costs are highly concentrated among people with multiple chronic conditions, behavioral health problems, and those with physical limitations or disabilities. With a better understanding of these patients' challenges, health care systems and providers can address patients' complex social, behavioral, and medical needs more effectively and efficiently. Goal: To investigate how the challenges faced by this population affect their experiences with the health care system and examine potential opportunities for improvement. Methods: Analysis of the 2016 Commonwealth Fund Survey of High-Need Patients, June­September 2016. Key findings and conclusions: The health care system is currently failing to meet the complex needs of these patients. High-need patients have greater unmet behavioral health and social issues than do other adults and require greater support to help manage their complex medical and nonmedical requirements. Results indicate that with better access to care and good patient­provider communication, high-need patients are less likely to delay essential care and less likely to go to the emergency department for nonurgent care, and thus less likely to accrue avoidable costs. For health systems to improve outcomes and lower costs, they must assess patients' comprehensive needs, increase access to care, and improve how they communicate with patients.

Topical Review: Theoretical Frameworks in Pediatric Adherence-Promotion Interventions: Research Findings and Methodological Implications.

OBJECTIVE: To summarize the guiding theoretical frameworks included in pediatric adherence-promotion interventions and characterize targeted domains using the theoretical domains framework (TDF), a standardized system developed by adult behavior change researchers. METHODS: A systematic review of PubMed, PsycINFO, and CINAHL databases identified 47 articles describing pediatric adherence-promotion interventions. Data extraction was completed independently by two authors. Targeted intervention domains were classified using the TDF. RESULTS: The majority of interventions did not cite a guiding theoretical framework or cited multiple theories with overlapping domains. The TDF was a reliable categorization system and suggested that pediatric adherence-promotion interventions most commonly target knowledge, skills, and social influences. CONCLUSIONS: Pediatric adherence-promotion interventions draw from a variety of theories and lack a consistent language for describing targeted domains. The adapted TDF proposed here is one method of reducing variability in intervention development and reporting and may facilitate efforts to identify the processes that improve adherence.

Models of Care for High-Need, High-Cost Patients: An Evidence Synthesis.

This brief analyzes experts' reviews of evidence about care models designed to improve outcomes and reduce costs for patients with complex needs. It finds that successful models have several common attributes: targeting patients likely to benefit from the intervention; comprehensively assessing patients' risks and needs; relying on evidence-based care planning and patient monitoring; promoting patient and family engagement in self-care; coordinating care and communication among patients and providers; facilitating transitions from the hospital and referrals to community resources; and providing appropriate care in accordance with patients' preferences. Overall, the evidence of impact is modest and few of these models have been widely adopted in practice because of barriers, such as a lack of supportive financial incentives under fee-for-service reimbursement arrangements. Overcoming these challenges will be essential to achieving a higher-performing health care system for this patient population.

How Strong Is the Primary Care Safety Net? Assessing the Ability of Federally Qualified Health Centers to Serve as Patient-Centered Medical Homes.

By expanding access to affordable insurance coverage for millions of Americans, the Affordable Care Act will likely increase demand for the services provided by federally qualified health centers (FQHCs), which provide an important source of care in low-income communities. A pair of Commonwealth Fund surveys asked health center leaders about their ability to function as medical homes. Survey findings show that between 2009 and 2013, the percentage of centers exhibiting medium or high levels of medical home capability almost doubled, from 32 percent to 62 percent. The greatest improvement was reported in patient tracking and care management. Despite this increased capability, health centers reported diminished ability to coordinate care with providers outside of the practice, particularly specialists. Ongoing federal funding and technical support for medical home transformation will be needed to ensure that FQHCs can fulfill their mission of providing high-quality, comprehensive care to low-income and minority populations.

The Affordable Care Act's payment and delivery system reforms: a progress report at five years.

In addition to its expansion and reform of health insurance coverage, the Affordable Care Act (ACA) contains numerous provisions intended to resolve underlying problems in how health care is delivered and paid for in the United States. These provisions focus on three broad areas: testing new delivery models and spreading successful ones, encouraging the shift toward payment based on the value of care provided, and developing resources for systemwide improvement. This brief describes these reforms and, where possible, documents their initial impact at the ACA's five-year mark. While it is still far too early to offer any kind of definitive assessment of the law's transformation-seeking reforms, it is clear that the ACA has spurred activity in both the public and private sectors, and is contributing to momentum in states and localities across the U.S. to improve the value obtained for our health care dollars.

Treatment adherence in patients with headache: a systematic review.

OBJECTIVE: To review and critically evaluate the extant research literature pertaining to adherence in youth and adults with headache and to provide recommendations for future research. BACKGROUND: This article provides the first systematic review of pediatric headache adherence and updates a previous review of treatment adherence in adults with headache. DESIGN: Systematic review of empirical literature. METHODS: A literature search with no date restriction was conducted using PubMed and PsycINFO electronic databases and bibliographies of relevant articles. RESULTS: Adherence rates in adults with headache range considerably from 25% to 94% across treatment, assessment method, and definition of adherence utilized. Methods to assess adherence included retrospective prescription claims data, paper or electronic diaries, follow-up appointment attendance, written and verbal self-report of general adherence, verbal self-report of adherence over a specific amount of time via in person interview or telephone, validated adherence measures, adherence questionnaires without validation, and counselor ratings of homework. Each methodology and assessment tool demonstrated strengths and weaknesses. No studies have systematically examined medication adherence in children with headache, and the few available studies examining adherence to behavioral treatment have documented adherence rates ranging from 52% to 86%. CONCLUSIONS: Adherence research in adults with headache is growing, but studies demonstrate a number of methodological shortcomings. Adherence research in children with headache, and adherence intervention research in both adults and children, is scant. Future research should use objective measures of adherence, consider over-the-counter medications and medication overuse, examine demographic, psychological, and behavioral correlates of adherence, assess adherence to botulinum toxin type A, and examine the efficacy of adherence interventions in individuals with headache.

An examination of the Allocation of Treatment Responsibility scale in adolescents with epilepsy.

The purpose of the current study was to examine the psychometric properties of the adapted Allocation of Treatment Responsibility (ATR) scale and the distribution of tasks related to oral medication and clinic and laboratory visits in a sample of adolescents with epilepsy. Adolescents with epilepsy (N = 50; ages 13-17 years) and their caregivers completed the adapted ATR and a measure of medication management. Internal consistency for the adapted ATR was strong (total and subscale range: 0.75-0.97). Validity was partially supported by significant correlations between adolescent age and ATR oral medication responsibility for both respondent measures. Allocation of Treatment Responsibility total scores were not associated with adherence to medications and clinic appointments. Initial findings are promising and have important implications for assessing the distribution of treatment responsibility among adolescents with epilepsy and their families.

Clinical Outcome Assessments and Digital Health Technologies Supporting Clinical Trial Endpoints in Early Parkinson's Disease: Roundtable Proceedings and Roadmap for Research.

This article summarizes the Parkinson's Disease (PD) Endpoints Roundtable, which was held in Washington, D.C., on November 2-3, 2022, and hosted by The Michael J. Fox Foundation for Parkinson's Research, Parkinson's UK, and Parkinson Canada. This event brought representatives from academia and industry together with those from regulatory agencies, community partners, and research funders to discuss challenges in clinical outcome assessment development for treatments in early PD and to identify priorities for the field and opportunities for collaboration. This article provides a summary of the presentations given and topics discussed at the roundtable and synthesizes the discussions about the development of clinical outcome assessments and the use of digital health technologies for developing clinical trial endpoints.

Twenty Years of Legal Marriage for Same-Sex Couples in the United States: Evidence Review and New Analyse.

Twenty years ago, the United States was divided by heated debates over legalizing marriage for same-sex couples. Those in favor argued that granting same-sex couples access to marriage would strengthen commitment for same-sex couples, extend the financial benefits of marriage to same-sex households, and improve outcomes for children raised by same-sex parents. Those who were opposed argued that granting legal status to marriages between same-sex partners would alter the foundation of marriage and diminish its value for different-sex couples, ultimately harming children by making them less likely to be raised in stable, two-parent families. It has now been 20 years since Massachusetts became the first state to issue marriage licenses to same-sex couples in May 2004. The consequences of extending legal recognition to same-sex couples need no longer be a topic of speculation and debate; researchers have had two decades to study the consequences of legalizing marriage for same-sex couples on lesbian, gay, bisexual, and transgender (LGBT) individuals; their children; and the general public. The broad goal of this study is to document those consequences. The authors pursued this goal in two ways. First, they conducted a comprehensive review of the existing research literature on the effects of legalizing marriage for same-sex couples. Second, they conducted new analyses to evaluate the prediction that rates of marriage, cohabitation, and divorce and attitudes toward marriage would be adversely affected by granting same-sex couples access to legal marriage.

Detection of colonization by carbapenemase-producing Gram-negative Bacilli in patients by use of the Xpert MDRO assay.

Detecting colonization of patients with carbapenemase-producing bacteria can be difficult. This study compared the sensitivity and specificity of a PCR-based method (Xpert MDRO) for detecting blaKPC, blaNDM, and blaVIM carbapenem resistance genes using GeneXpert cartridges to the results of culture with and without a broth enrichment step on 328 rectal, perirectal, and stool samples. The culture method included direct inoculation of a MacConkey agar plate on which a 10-µg meropenem disk was placed and plating on MacConkey agar after overnight enrichment of the sample in MacConkey broth containing 1 µg/ml of meropenem. Forty-three (13.1%) samples were positive by PCR for blaKPC and 11 (3.4%) were positive for blaVIM; none were positive for blaNDM. The sensitivity, specificity, positive predictive value (PPV), and negative predictive value (NPV) of the PCR assay for blaKPC were 100%, 99.0%, 93.0%, and 100%, respectively, compared to broth enrichment culture and sequencing of target genes. The sensitivity, specificity, PPV, and NPV of the assay for blaVIM were 100%, 99.4%, 81.8%, and 100%, respectively. Since none of the clinical samples contained organisms with blaNDM, 66 contrived stool samples were prepared at various dilutions using three Klebsiella pneumoniae isolates containing blaNDM. The PCR assay showed 100% positivity at dilutions from 300 to 1,800 CFU/ml and 93.3% at 150 CFU/ml. The Xpert MDRO PCR assay required 2 min of hands-on time and 47 min to complete. Rapid identification of patients colonized with carbapenemase-producing organisms using multiplex PCR may help hospitals to improve infection control activities.

Caregiver demand and parent distress in juvenile rheumatic disease: the mediating effect of parent attitude toward illness.

Parents of youth with juvenile rheumatic diseases (JRD) often take on illness management responsibilities that can become burdensome, potentially resulting in poor parent adjustment outcomes. However, not all caregivers will experience increased distress as a result of variability in stress appraisals. The current study examined the role of parent illness attitudes in the relation between perceived caregiver demand and parental distress. Youth (N = 70) ages 7-18 years diagnosed with a JRD and their parents were recruited from a pediatric rheumatology clinic. Parents completed measures of caregiver demand, parental distress, and illness attitudes. Hierarchical regression revealed a relationship between caregiver demand and parental distress. A significant relationship was also found between caregiver demand and parent illness attitudes, as well as parent illness attitudes and parental distress. Thus, parent illness attitudes mediated the relationship between caregiver demand and parental distress. Techniques aimed at altering negative illness attitudes may help parents cope with their caregiving responsibilities.

Diagnostic role of fractional exhaled nitric oxide in pediatric eosinophilic esophagitis, relationship with gastric and duodenal eosinophils.

BACKGROUND: Eosinophilic esophagitis (EoE) is an eosinophilic-predominant inflammation of the esophagus diagnosed by upper endoscopy and biopsies. A non-invasive and cost-effective alternative for management of EoE is being researched. Previous studies assessing utility of fractional exhaled nitric oxide (FeNO) in EoE were low powered. None investigated the contribution of eosinophilic inflammation of the stomach and duodenum to FeNO. AIM: To assess the utility of FeNO as a non-invasive biomarker of esophageal eosinophilic inflammation for monitoring disease activity. METHODS: Patients aged 6-21 years undergoing scheduled upper endoscopy with biopsy for suspected EoE were recruited in our observational study. Patients on steroids and with persistent asthma requiring daily controller medication were excluded. FeNO measurements were obtained in duplicate using a chemiluminescence nitric oxide analyzer (NIOX MINO, Aerocrine, Inc.; Stockholm, Sweden) prior to endoscopy. Based on the esophageal peak eosinophil count (PEC)/high power field on biopsy, patients were classified as EoE (PEC ≥ 15) or control (PEC ≤ 14). Mean FeNO levels were correlated with presence or absence of EoE, eosinophil counts on esophageal biopsy, and abnormal downstream eosinophilia in the stomach (PEC ≥ 10) and duodenum (PEC ≥ 20). Wilcoxon rank-sum test, Spearman correlation, and logistic regression were used for analysis. P value < 0.05 was considered significant. RESULTS: We recruited a total of 134 patients, of which 45 were diagnosed with EoE by histopathology. The median interquartile range FeNO level was 17 parts per billion (11-37, range: 7-81) in the EoE group and 12 parts per billion (8-19, range: 5-71) in the control group. After adjusting for atopic diseases, EoE patients had significantly higher FeNO levels as compared to patients without EoE (Z = 3.33, P < 0.001). A weak yet statistically significant positive association was found between the number of esophageal eosinophils and FeNO levels (r = 0.30, P < 0.005). On subgroup analysis within the EoE cohort, higher FeNO levels were noted in patients with abnormal gastric (n = 23, 18 vs 15) and duodenal eosinophilia (n = 28, 21 vs 14); however, the difference was not statistically significant. CONCLUSION: After ruling out atopy as possible confounder, we found significantly higher FeNO levels in the EoE cohort than in the control group.