"On the scene": Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.

Cincinnati Children's Hospital Medical Center is transforming the way it cares for its patients by building a sophisticated model that focuses on accountable care across the continuum. As nurses from different parts of the organization, we act as change agents to develop an integrated structure built around the patient's needs, from prevention to self-management. We demonstrate how organizational structure, fluid staffing, professional practice, and healthy behaviors operationally catalyze the continuum of care, and how we utilize self-management, community-based programs, and care integration to change the outcome for our patients and families. While care coordination is taking on many forms in medical centers around the world, Cincinnati Children's is proud and passionate about sharing its best practices along the way.

Clinical effectiveness of comprehensive psychological intervention for nonadherence to medical treatment: a case series.

OBJECTIVE: To evaluate the effectiveness of an adherence promotion intervention provided to patients and families referred to a clinical service. METHODS: 6 patients and their caregivers representing 5 different chronic conditions were seen for comprehensive psychological intervention that was evaluated based on electronic monitoring of adherence to prescribed oral medication. RESULTS: Time series analysis (Auto-Regressive Integrated Moving Average) indicated that for each of the 6 cases, treatment adherence increased during the intervention phase relative to nonintervention periods, but for 5 of these 6 patients, adherence decreased during the follow-up period (p < .05). CONCLUSION: Comprehensive adherence promotion strategies delivered in standard clinical practice were effective, but the effects did not persist after treatment. Future adherence promotion interventions should focus on sustaining intervention effects.

Adapting pediatric psychology interventions: lessons learned in treating families from the Middle East.

OBJECTIVE: Pediatric psychologists are increasingly called upon to treat children from non-Western countries, whose cultures may contrast with a Western medical setting. Research on cultural adaptations of evidence-based treatments (EBTs), particularly for individuals from the Middle East, is sparse. To address this need, we discuss clinical issues encountered when working with patients from the Middle East. METHODS: Synthesis of the literature regarding culturally adapted EBTs and common themes in Middle Eastern culture. Case vignettes illustrate possible EBT adaptations. RESULTS: Integrating cultural values in treatment is an opportunity to join with patients and families to optimize care. Expectations for medical and psychological treatment vary, and collaborations with cultural liaisons are beneficial. CONCLUSIONS: Critical next steps include systematic development, testing, and training in culturally adapting EBTs in pediatric medical settings. Increased dialogue between clinicians, researchers, and cultural liaisons is needed to share knowledge and experiences to enhance patient care.

Genetic biomarkers of health-related quality of life in pediatric asthma.

OBJECTIVES: To determine the relationship between single nucleotide polymorphisms in candidate genes associated with multiple asthma phenotypes and health-related quality of life (HRQOL). STUDY DESIGN: A cross-sectional study was conducted at a pediatric hospital in 275 school-aged children diagnosed with asthma and their caregivers. Genomic DNA was obtained from children, and caregivers completed a measure of their child's HRQOL. Analysis of variance was used to investigate the association between single nucleotide polymorphisms and HRQOL. RESULTS: Children homozygous for the major variant at IL-4RA rs 1805010 had significantly better HRQOL than their counterparts. Significant associations with pulmonary function were not observed. CONCLUSIONS: Genes associated with asthma phenotype can be associated with HRQOL at least partly independent of pulmonary function.

Transitioning cognitively impaired young patients with special health needs to adult-oriented care: collaboration between medical providers and pediatric psychologists.

PURPOSE OF REVIEW: Cognitive disability places adolescents with special health needs at risk for poor health outcomes. Consequently, medical providers are faced with the challenge of deciding how to prepare cognitively impaired young adults for successful transition from child-centered to adult-oriented care. We provide a case example to illustrate this complex issue, describe research linking cognitive impairments to functioning in the context of chronic disease management, summarize current transition practices, offer recommendations to facilitate transition planning, and discuss how pediatric psychologists can assist this process. RECENT FINDINGS: Concurrent cognitive impairments and pediatric chronic illness impose significant limitations on adolescents' self-care, disease management, and transition to adult care. There is also great variability in transition practices across pediatric centers, despite published transition guidelines, and little is known about how to develop successful transition planning for cognitively impaired adolescents. SUMMARY: Transitioning cognitively impaired adolescents is a salient challenge in need of greater attention and further research. A multidisciplinary approach to transition that is tailored to the developmental, cognitive, and adaptive needs of this population can maximize the likelihood that transition will be successful.

Sociodemographic and psychosocial factors associated with continuous subcutaneous insulin infusion in adolescents with type 1 diabetes.

OBJECTIVE: To examine the role of sociodemographic factors and psychosocial adjustment in continuous subcutaneous insulin infusion (CSII) use among adolescents with type 1 diabetes. METHODS: A total of 150 adolescents with type 1 diabetes and their caregivers completed measures of general psychological functioning, diabetes functioning, and stressful life events. Blood glucose monitoring (BGM) frequency and glycemic control were also assessed. Logistic regression was used to determine associations between CSII use and sociodemograpic and psychosocial factors. RESULTS: All logistic regression models were significant, indicating a large proportion of the variance in CSII use was associated with sociodemographic, diabetes-specific and psychosocial variables. Final models showed higher frequency of BGM and having private insurance as significant correlates of CSII use. CSII use was also associated with adolescent and caregiver reports of sharing of responsibilities around diabetes management and negative affect regarding BGM. CONCLUSIONS: Adolescents currently prescribed CSII therapy evidenced key differences from their counterparts using multiple daily injections (MDI) in insurance status, diabetes management behavior, and family functioning related to diabetes. Efforts to understand the role of family factors in the maintenance of CSII therapy with clinical indicators of CSII use may inform treatment effectiveness.

Continuation of Buprenorphine to Facilitate Postoperative Pain Management for Patients on Buprenorphine Opioid Agonist Therapy.

BACKGROUND: Acute pain management in patients on buprenorphine opioid agonist therapy (BOAT) can be challenging. It is unclear whether BOAT should be continued or interrupted for optimization of postoperative pain control. OBJECTIVES: To determine an evidence-based approach for pain management in patients on BOAT in the perioperative setting, particularly whether BOAT should be continued or interrupted with or without bridging to another mu opioid agonist and to identify benefits and harms of either perioperative strategy. STUDY DESIGN: Systematic literature review with qualitative data synthesis. SETTING: Hospital, perioperative. METHODS: The study protocol was registered on PROSPERO (Registration number 9030276355). Medline via OVID, EMBASE, CINAHL, and the Cochrane CENTRAL register of trials were searched for prospective or retrospective observational or controlled studies, case series, and case reports that described perioperative or acute pain care for patients on BOAT. References of narrative and systematic reviews addressing acute pain management in patients on BOAT and references of included articles were hand-searched to identify additional original articles for inclusion. The full text of publications were reviewed for final inclusion, and data were extracted using a standardized data extraction form. Results were summarized qualitatively. Primary outcomes were postoperative pain intensity and total opioid use and identification of benefits and harms of perioperative strategies. RESULTS: Eighteen publications presenting data on the perioperative management of patients on BOAT were identified: 10 case reports, 5 case series, and 3 retrospective cohort studies. Eleven articles reported continuation of BOAT, 2 concerned bridging BOAT, and 4 articles described stopping BOAT without planned bridging. In one retrospective cohort study, BOAT was continued in half and interrupted in half of patients. Patients on BOAT may have pain that is more difficult to treat than those who are not on OAT. There is no clear evidence that one particular strategy provides superior postoperative pain control, but interruption of BOAT may result in harm, including failure to return to baseline BOAT doses, continuing non-BOAT opioid use, or relapse of opioid use disorder. LIMITATIONS: There were a limited number of articles relevant to the study question consisting of case reports and retrospective observational studies. Some omitted relevant details. No prospective studies were found. CONCLUSIONS: There is no clear benefit to bridging or stopping BOAT but failure to restart it may pose concerns for relapse. We recommend continuing BOAT in the perioperative period when possible and incorporating an interdisciplinary approach with multimodal analgesia. KEY WORDS: Opioid use disorder, opiate substitution treatment, buprenorphine, buprenorphine-naloxone, buprenorphine opioid agonist therapy, postoperative pain, acute pain, multimodal analgesia.

Willingness to use an in-hospital supervised inhalation room among people who smoke crack cocaine in Vancouver, Canada.

INTRODUCTION AND AIMS: People who use illicit drugs (PWUD) often engage in drug use during hospitalisation. Adverse outcomes may arise from efforts to conceal inpatient drug use, especially in hospital settings that rely on abstinence-based policies. Harm reduction interventions, including supervised drug consumption services, have not been well studied in hospital settings. This study examines factors associated with willingness to use an in-hospital supervised inhalation room (SIR) among people who smoke crack cocaine in Vancouver, Canada. DESIGN AND METHODS: Cross-sectional data from two open prospective cohorts of PWUD involving people who smoke crack cocaine were collected between June 2013 and May 2014. Multivariable logistic regression analyses were used to identify factors associated with willingness to use an in-hospital SIR. RESULTS: Among 539 participants, 320 (59.4%) reported willingness to use an in-hospital SIR. Independent factors positively associated with willingness included: ever used drugs in hospital [adjusted odds ratio (AOR) = 1.89], and daily non-injection crack use (AOR = 1.63). Difficulty accessing new crack pipes (AOR = 0.51) was negatively associated with willingness (all P < 0.05). The most commonly reported reasons for willingness were to: remain in hospital (50.6%), reduce drug-related risks (25.6%) and reduce the stress of hospital discharge for using drugs (24.7%). DISCUSSION AND CONCLUSIONS: A high proportion of people who smoke crack cocaine reported willingness to use an in-hospital SIR, and those willing were more likely to report heavy drug use and previous in-hospital use. These findings highlight the potential utility of SIRs to complement existing in-hospital services for PWUD.

Psoriasis in childhood: effective strategies to improve treatment adherence.

Psoriasis is a relatively common chronic inflammatory skin disease in children for which there is no cure. Most children have mild disease that can be managed with topical therapy as opposed to phototherapy or systemic therapy. Despite the mild presentation of psoriasis in most children, the disease can have a significant impact on quality of life due to the need for ongoing treatment, the frequently visible nature of the cutaneous manifestations, and the social stigma that is associated with psoriasis. Adherence to treatment, in particular topical therapy, is often poor in adults and compromises response to therapy and medical provider management strategies. Multiple factors that may contribute to nonadherence in adults with psoriasis have been identified, including lack of education on the disease and expectations for management, issues related to ease of use and acceptability of topical medications, and anxiety regarding possible medication side effects. There is currently no published data on adherence in the pediatric psoriasis population; however, poor adherence is often suspected when patients fail to respond to appropriate therapy. General strategies used to assess adherence in other pediatric disease populations can be applied to children with psoriasis, and interventions that reflect experience in other chronic dermatologic disorders such as atopic dermatitis may also be helpful for medical providers caring for children with psoriasis.

Stigmatizing harm reduction through language: a case study into the use of "addict" and opposition to supervised injection sites in Canada.

Stigma continues to be the largest barrier for accessing treatment among people experiencing drug addiction. The dominant portrayals that exist about people who use drugs are often damaging and act to dehumanize the group as a whole. When left unchallenged, stereotypes can act as truthful depictions and facilitate the resistance against harm reduction services that are based on a human rights model. The use of labels is one way stigma is perpetuated by eliciting the label's stereotyped narratives onto an individual or group. Within harm reduction discourse, the word "addict" can have detrimental effects on how the public perceives people experiencing addiction and their deservingness of pragmatic services. This article aims to draw attention to the inattention we give "addict" in language and explain how its routine use in society acts to perpetuate addiction stigma. Using the example of supervised injection site opposition in Canada, the use of "addict" is used as a way to understand how stigma through language works to impede the expansion of harm reduction initiatives.

Incorporating electronic monitoring feedback into clinical care: a novel and promising adherence promotion approach.

This paper presents case examples that document the preliminary clinical utility of using electronic monitoring (EM) feedback to tailor empirically validated adherence-promoting interventions, delivered in standard clinical practice. Challenges of utilizing EM in standard clinical practice as well as future directions are also discussed. Two adolescents referred for behavioral adherence promotion intervention are described. Each youth was provided a MEMS® bottle and one oral medication was chosen jointly by the therapist, family, and medical provider for adherence monitoring. Graphical MEMS® feedback was provided to families during intervention visits and subsequently used to tailor adherence interventions to target each family's unique needs. EM feedback was a feasible and clinically rich supplement to adherence-promoting interventions. EM facilitated identification of adherence barriers and successes, and open and non-adversarial discussions regarding adherence between patients, families, and clinicians, and provided real-time representations of patients' medication administration. These case presentations suggest that EM feedback can be a clinically useful tool when used as a supplement to an empirically supported intervention delivered in standard psychological practice aimed at adherence promotion among chronically ill youth.

Usefulness of cellular text messaging for improving adherence among adolescents and young adults with systemic lupus erythematosus.

OBJECTIVE: In a cohort of 70 patients with childhood-onset systemic lupus erythematosus (cSLE): to determine the baseline adherence to medications and visits; to investigate the effects of cellular text messaging reminders (CTMR) on adherence to clinic visits; and to study the influence of CTMR on adherence to use of hydroxychloroquine (HCQ). METHODS: CTMR were sent to 70 patients prior to clinic visits for 14 months. A subgroup of patients were evaluated for medication adherence to HCQ: 19 patients receiving CTMR prior to each scheduled HCQ dose were compared to 22 patients randomized to standard of care education about HCQ. Visit adherence was measured using administrative databases. Pharmacy refill information, self-report of adherence, and HCQ blood levels were utilized to monitor medication adherence to HCQ. Sufficient adherence to visits or HCQ was defined as estimates > 80%. Disease activity was primarily monitored with the Systemic Lupus Erythematosus Disease Activity Index. RESULTS: At baseline, 32% of patients were sufficiently adherent to HCQ, and 81% to clinic visits. Visit adherence improved significantly by > 80% among those who were nonadherent to clinic visits at the baseline CTMR (p = 0.01). CTMR did not influence adherence to HCQ over time. CONCLUSION: Patients with cSLE were only modestly adherent to HCQ and clinic visits. CTMR may be effective for improving visit adherence among adolescents and young adults with cSLE, but it does not improve adherence to HCQ.

Pediatric self-management: a framework for research, practice, and policy.

Self-management of chronic pediatric conditions is a formidable challenge for patients, families, and clinicians, with research demonstrating a high prevalence of poor self-management and nonadherence across pediatric conditions. Nevertheless, effective self-management is necessary to maximize treatment efficacy and clinical outcomes and to reduce unnecessary health care utilization and costs. However, this complex behavior is poorly understood as a result of insufficient definitions, reliance on condition-specific and/or adult models of self-management, failure to consider the multitude of factors that influence patient self-management behavior, and lack of synthesis of research, clinical practice, and policy implications. To address this need, we present a comprehensive conceptual model of pediatric self-management that articulates the individual, family, community, and health care system level influences that impact self-management behavior through cognitive, emotional, and social processes. This model further describes the relationship among self-management, adherence, and outcomes at both the patient and system level. Implications for research, clinical practice, and health care policy concerning pediatric chronic care are emphasized with a particular focus on modifiable influences, evidence-based targets for intervention, and the role of clinicians in the provision of self-management support. We anticipate that this unified conceptual approach will equip stakeholders in pediatric health care to (1) develop evidence-based interventions to improve self-management, (2) design programs aimed at preventing the development of poor self-management behaviors, and (3) inform health care policy that will ultimately improve the health and psychosocial outcomes of children with chronic conditions.

Electronic monitoring feedback to promote adherence in an adolescent with Fanconi Anemia.

OBJECTIVE: This report describes an intervention to promote medication adherence and treat comorbid psychological symptoms in a 17 year-old female with Fanconi Anemia. The patient presented with a typical adherence rate estimated at 25% and self-reported symptoms of depressed mood and anxiety. METHOD: Our comprehensive treatment approach integrated electronic monitoring (EM), an emerging strategy for adherence promotion, and motivational interviewing (MI) within an evidence-based cognitive-behavioral therapy (CBT) framework. We used EM data to assess and track medication adherence. The therapist reviewed these data with the patient and family in session and used MI techniques to promote health behavior change. We analyzed changes in adherence rates over time using a time series analysis (Auto-Regressive Moving Average [ARIMA]). In addition, the patient and her mother reported on depression, anxiety, and quality of life at intake and after 12 months, and the therapist treated psychological symptoms with CBT. RESULTS: The average adherence rate during the baseline EM phase was ~53%. The mean adherence rate across treatment was ~77%, and after 17 months, the final weekly adherence rate was 82%. Adherence rates significantly improved over the treatment period, ARIMA t = 36.16, p < .01. CONCLUSIONS: EM feedback and MI are viable additions to CBT to promote medication adherence in adolescence. This approach has the potential to effectively treat adolescents with adherence problems and psychological symptoms across multiple chronic illness diagnoses, and ultimately to improve health and quality of life outcomes.

Psychological Functioning of Children and Adolescents With Eosinophil-Associated Gastrointestinal Disorders.

This study examined health-related quality of life and adjustment among children with eosinophil- associated gastrointestinal disorders (EGID) compared with an age-matched sample without acute or chronic illness. Participants were youth ages 2 to 18 years. Children and caregivers completed measures of psychological symptoms and health-related quality of life (HRQOL). Significant group differences were found for child report of depressive, as well as anxiety symptoms. Significant group differences were also found for caregiver report of psychological symptoms and social skills. Finally, based on parent and youth report, HRQOL and greater school absenteeism were associated with EGID diagnosis.