Complex Chronic Illness Research Articles

Patients as knowledge partners in the context of complex chronic conditions

This article conveys how taking patient knowledge seriously can improve patient experience and further medical science. In clinical contexts related to infection-associated chronic conditions and other complex chronic illnesses, patient...

Possible Protective Effect of Trimetazidine Alone and in Combination with Methotrexate in Attenuating Joint Inflammation in Freund’s Adjuvants Induced Rheumatoid Arthritis in Rats

Abstract Rheumatoid Arthritis is a complex chronic auto-immune systemic illness. It is primarily characterized by synovial hyperplasia and localized pro-inflammatory cytokine production that causes chronic synovitis and a long-lasting inflammation of the joints and bones. The study's goal was to look into the potential anti-arthritic effects of trimetazidine in a rat model of Freund’s complete adjuvant (FCA)-induced arthritis, which has many clinical and biochemical similarities to rheumatoid arthritis (RA). The underlying antirheumatoid arthritis mechanism, as well as its impact on TLR4/NFKB pathway were investigated to understand and confirm its potential efficacy in RA treatment. Our study was based on 4 groups, control group received saline injections, trimetazidine (7.2 mg/kg/day) treated group, methotrexate (0.75 mg/kg/week) treated group and combination group that received both medications in the same doses for 21 days. The degree of ipsilateral paw swelling, ankle diameter, body weight, tissue expression levels of TLR4(toll like receptor) and NFKB (nuclear factor kappa b) in paw, and serum ACPA (anticitrullinated protein antibodies) were all measured. With a slight but not statistically significant impact on ankle diameter, trimetazidine and methotrexate considerably reduced the arthritic symptoms as indicated by ipsilateral paw volume. It had no discernible impact on body weight. Together with the overall improved synovial hyperplasia and cartilage disarrangements, TLR4 and NFKB expression in synovial tissue were reduced. In a rat model of CFA-induced arthritis, trimetazidine displays a considerable anti- inflammatory impact that is even better than methotrexate and has the potential to be anti-arthritic. Additionally, there is a large additive effect between the two medications.

Therapeutic potential and recent progression of BTK inhibitors against rheumatoid arthritis.

Rheumatoid arthritis (RA) is a complex chronic inflammatory illness that affects the entire physiology of human body. It has become one of the top causes of disability worldwide. The development and progression of RA involves a complex interplay between an individual's genetic background and various environmental factors. In order to effectively manage RA, a multidisciplinary approach is required, as this disease is complicated and its pathophysiological mechanism is not fully understood yet. In majority of arthritis patients, the presence of abnormal B cells and autoantibodies, primarily anti-citrullinated peptide antibodies and rheumatoid factor affects the progression of RA. Therefore, drugs targeting B cells have now become a hot topic in the treatment of RA which is quite evident from the recent trends seen in the discovery of various B cell receptors (BCRs) targeting agents. Bruton's tyrosine kinase (BTK) is one of these recent targets which play a role in the upstream phase of BCR signalling. BTK is an important enzyme that regulates the survival, proliferation, activation and differentiation of B-lineage cells by preventing BCR activation, FC-receptor signalling and osteoclast development. Several BTK inhibitors have been found to be effective against RA during the invitro and invivo studies conducted using diverse animal models. This review focuses on BTK inhibition mechanism and its possible impact on immune-mediated disease, along with the types of RA currently being investigated, preclinical and clinical studies and future prospective.

Effects of tumor necrosis factor-α rs1800629 and interleukin-10 rs1800872 genetic variants on type 2 diabetes mellitus susceptibility and metabolic parameters among Jordanians.

Diabetes mellitus (DM) is a complex chronic illness with diverse pathogenesis and associations with health complications. Genetic factors significantly contribute to DM development, and tumor necrosis factor alpha (TNF-α) and interleukin-10 (IL-10) genes play major roles. This study aims to explore the influence of TNF-α rs1800629 and IL-10 rs1800872 genetic variants on T2DM development in Jordanian patients at Jordan University Hospital. One-hundred and 60 diabetic and 159 non-diabetic subjects were genotyped for TNF-α rs1800629. Additionally, 181 diabetic and 191 non-diabetic subjects were genotyped for IL-10 rs1800872 using PCR-RFLP genotyping method. The demographic, lipid, and glycemic parameters of the patients were obtained from the computer records in the hospital. TNF-α rs1800629 and IL-10 rs1800872 genetic variants exhibited significant different frequencies in non-T2DM subjects and T2DM patients. The difference in TNF-α rs1800629 genotype frequency between non-T2DM and T2DM participants was significant under the dominant model, while the IL-10 rs1800872 genotype frequency was significant under the recessive model. A significant association (p<0.05) was observed between TNF-α rs1800629 and total cholesterol levels, and between IL-10 rs1800872 polymorphism and glycosylated hemoglobin (HbA1c) and creatinine levels among T2DM patients. TNF-α rs1800629 and IL-10 rs1800872 are identified as genetic risk factors for T2DM. These variants also correlate with variations in cholesterol, HbA1c, and creatinine levels among T2DM patients. Larger clinical studies are warranted to validate these findings.

비만의 변화된 대사 적응에 대한 기능의학적 이해

The World Health Organization describes obesity as “a chronic complex disease defined by excessive fat deposits that can impair health,” declaring obesity as a major health concern and disease in 1997. In 2013, the American Medical Association recognized the obesity disease condition as one associated with various pathophysiological problems requiring intervention. The global obese population continues to increase, calculated to be greater than 1 billion in 2024, or about 1 in every 8 persons. Likewise, the prevalence of obesity among Korean adults continues to increase. As a significant health risk factor and one of the main causes of chronic disease, obesity is caused by the increased intake of ultra-processed food, excessive nutritional intake, inadequate physical activity, smoking, heavy drinking, sleep disorders, particular chemicals and drugs, environmental toxins, endocrine disruptors, stress and mental illness, genetic and congenital disorders, et cetera. Obesity has detrimental effects on physical, mental, psychological, and sociological well-being, leading to body dysmorphia and image disfiguration, discomfort, disability, disease, and death. Obesity is not simply a risk factor for chronic diseases, rather, it is an epidemic of a complex chronic illness that is difficult to be cured. Obesity is exacerbated in the modern era due to rapidly changing societal lifestyles and its associated multifaceted effects. Due to the difficulty in the management of obesity, the individual causes and societal influence on lifestyle must be tightly controlled. The most decisive pathological process of obesity is inflammatory changes of adipose tissue. Produced by adipose tissue, various hormones and inflammatory agents affect normal tissue to induce an inflammatory response, leading to insulin resistance and a disruption of neuroendocrine homeostasis, particularly the reduction in thyroid hormone and the imbalance of adrenal hormones. In this article, the author will review the functional medicine aspect of altered metabolic adaptation in obesity.

Parental Perceptions of the Impact of a Child’s Complex Chronic Condition: A Validation Study of the Impact on Family Scale

The diagnosis of a child’s complex chronic illness may impact family relationships and cohesion. The Impact on Family Scale (IFS) is an instrument used to assess the parental perception of the effects of children’s chronic illness on family life. With a sample of 110 mothers and fathers between the ages of 29 and 50 who have a child with a complex chronic illness, we examine evidence of the validity of the IFS for use in Portugal within this specific family configuration, (1) comparing its factor structure with the original one; (2) assessing its reliability; and (3) evaluating its relationship with life satisfaction and family cohesion/acceptance. As expected, CFA analysis showed that IFS is a one-factor reliable instrument with 12 items (Cronbach’s alpha = 0.910), which are negatively correlated with satisfaction with life (r = −0.229, p = 0.016) and positively correlated with family acceptance and cohesion (r = 0.363; p &lt; 0.001). The results support the validity of the IFS in families with children and adolescents with a complex chronic illness. The implications of the use of this instrument for research and professional practice is analyzed.

Mobile Monitoring-Enabled Telehealth for Patients with Complex Chronic Illnesses.

Telehealth has the potential to improve management of poorly controlled chronic diseases relative to clinic-based care alone. Mobile monitoring-enabled technologies could enhance telehealth for chronic illness care. Implementation in practice settings would rely on automated integration of data into the electronic health record (EHR). We describe the integration and visualization of data from four remote monitoring devices into the EHR that is coupled with the evaluation of an evidence-based nurse and pharmacist-led telehealth care model for patients with uncontrolled diabetes and hypertension. Using this new pragmatic infrastructure, clinicians use the EHR to prescribe for patients a suite of devices. Alerts are placed upon the data that notify a clinician when values go above or below set thresholds. These data are visualized in the clinical record and clinicians use the EHR as a tool for efficiently delivering and documenting patient telehealth encounters.

Association of Burnout With Primary Care Clinician Perception of Team-Based Scheduling Support.

Primary care clinician burnout is pervasive and detrimental. How components of teamwork and clinic culture might contribute to burnout remains unsettled. To examine associations between primary care clinician perceptions of specific components of teamwork and of organizational culture, and perceived stress and burnout. Cross-sectional survey study of primary care clinicians from 5 county health system clinics. Measures: Perceptions of teamwork related to coordination of care, and clinic provision of chronic disease self-management support; values alignment and workplace equity; and demographics. Descriptive statistics and Spearman's correlations to examine associations, controlling for clinic and examining response variability by clinic. Of 72 clinicians, 64% were female and 32% non-white. About 56% had worked at least 4 years and half worked 5 to 6 half days/week or more in their clinic. Clinicians who reported having someone on the clinician's care team routinely schedule follow-up appointments for patients with complex chronic illnesses reported lower stress and burnout. Those who perceived greater values alignment with their clinic and greater personal and employee equitable treatment had lower stress and burnout. Teamwork among clinicians and non-clinical staff, a component of teamwork that is not well-considered in current literature, could be an important piece of the puzzle to decrease the persistent and challenging issue of stress and burnout among primary care clinicians.

Intra‑Articular Platelet‑Rich Plasma Injections VS Hyaluronic Acid for Patients with Knee Osteoarthritis: A Systematic Review

Introduction One of the most common conditions leading to impairment, particularly in the elderly, is osteoarthritis (OA). Most often caused by knee and/or hip OA, OA is the most prevalent articular disease in the developed world and a major contributor to chronic. OA is recognized as a major contributor to disability and impairment, and it has a significant socioeconomic cost due to medical and surgical procedures, as well as lost productivity. OA is a complex chronic illness that begins with joint cartilage disintegration and progresses to synovitis, subchondral sclerosis, and the development of peripheral osteophytes. A treatment option for osteoarthritis cartilage injuries is platelet-rich plasma (PRP) therapy, which is linked to a decrease in tissue inflammation. However, there is still a lack of clinical research on PRP administration's price, length of treatment, and possible application as a treatment for articular cartilage injuries. Objectives This study aimed to examine the clinical outcomes of patients with knee osteoarthritis, comparing the clinical results of The Western Ontario and McMaster Universities Arthritis Index (WOMAC) between PRP and HA intra-articular injection. Methods The medical term “PRP”, “HA”, and “Knee Osteoarthritis” were used in Pubmed and Google Scholar to discover studies of the efficacy of Intra‑articular PRP injection VS HA in decreasing WOMAC scores up to October 2023. Two independent reviewers excluded the non-RCTs and other clinical studies irrelevant to the study question. Seven remaining studies were reviewed and screened for inclusion based on relevance to the subject and outcomes. Results Based on seven studies in this review, two studies showed that intra-articular platelet-rich plasma has a superior outcome on decreasing the WOMAC score than intra-articular hyaluronic acid injection with significant. Five of seven studies demonstrated that PRP has better outcomes on WOMAC score, even if not significantly. Conclusions PRP intra-articular injection is a clinically meaningful improvement for patients with knee OA, with no significant difference between treatment groups

Experiences of Parents of Children With Medical Complexity in the Pediatric Intensive Care Unit: A Scoping Review.

Medical advances and decreased mortality rates in the pediatric intensive care unit have increased the number of children surviving illnesses they may not have survived previously. The term child with medical complexity is poorly defined. The purposes of this scoping review were to examine the experiences of parents of children with medical complexity in the pediatric intensive care unit and describe strategies to help support these parents. Eight studies were eligible for inclusion. All were published from 2009 through 2021. One study was a quantitative observational study, 2 were mixed-methods studies, and 5 had a qualitative design. Parents experienced significant stress and depression. Sources of stress were parenting a child with complex chronic illness in the pediatric intensive care unit, uncertainty, communication between family members and clinicians, and lack of subspecialty communication. Strategies to assist parents included respecting parents' expertise and providing consistent and clear communication with family members and among subspecialty clinicians. This review is the first to examine the experiences of parents of children with medical complexity in the pediatric intensive care unit. The study was limited by lack of available research and lack of consensus for the definition of child with medical complexity. However, this review describes strategies that nurses may find useful when caring for parents of children with medical complexity.

The Impact of COVID-19 on Patients Receiving Care Coordination in Primary Care: A Qualitative Study.

Care coordination addresses the needs of patients with complex chronic illness and psychosocial issues, coordinating their care and social needs. It is not known how such patients receiving these services managed during the COVID-19 pandemic. The objective of this study was to learn how the health, health care, social needs, and finances of patients receiving care coordination were affected by the disruptions caused by the COVID-19 pandemic. We conducted semistructured interviews with 19 patients receiving care coordination in primary care across a statewide sample about how the COVID-19 pandemic affected their life in general, including their overall health, social connections, finances and employment, and mental health. A content analysis approach was applied in the data analysis. We identified 4 primary themes in patient interviews including: (1) patients reported few to no impacts on their physical health status or health care services; (2) patients felt disconnected from family, friends, and community in ways that affected their mental health and wellbeing; (3) there were little to no pandemic related impacts for those on fixed incomes or government supports; and (4) care coordinators provided a significant and reliable source of help, support, and comfort. Care coordination provided a supporting framework for the health and the health care needs of these patients, helping them navigate resources and maintain their physical health during the pandemic. Care coordinators were seen as providing needed communication, connection, and support that was especially needed during a time of social isolation and disconnection.

Characterization of sleep in emerging adults with cystic fibrosis on elexacaftor/tezacaftor/ivacaftor

Characterization of sleep in emerging adults with cystic fibrosis on elexacaftor/tezacaftor/ivacaftor

Barreiras que influenciam as atitudes dos enfermeiros face aos cuidados paliativos na unidade de cuidados intensivos neonatais: revisão scoping

Objectives: To identify the barriers that influence nurses' attitudes towards palliative care in the neonatal intensive care unit. Background: Neonatal nurses play a crucial role in caring for the newborn suffering from a complex chronic illness or who is at the end of life and needs palliative care. In the neonatal intensive care unit, the implementation of palliative care is inconsistent due to the existence of barriers that influence nurses' attitudes when faced with the need to make decisions related to newborns’ end-of-life or the suspension of curative treatments. Methods: Following the methodology designated by the Joanna Briggs Institute and the PRISMA-ScR as a complementary checklist, this scoping review was conducted in three phases and 10 databases were searched for relevant primary research studies, systematic reviews and meta-analyses, in English, Portuguese, French, and Spanish from 2016 to 2021. The data obtained through the extraction process were gathered in a table, and included the study characteristics, the population involved, the key findings related to the barriers influencing the nurses' attitudes towards the provision of palliative care in the neonatal unit and the instruments used to assess those attitudes. Results: Sixteen studies met the inclusion criteria. The main barriers identified by the studies arerelated to the absence of training in palliative care, difficulty in communication with parents and between health professionals, and the absence of policies related to the provision of neonatal palliative care. The semi-structured interview has been the most common and widely used instrument for qualitative studies. Questionnaires were selected for quantitative studies, with the NiPCAS being the most commonly used in the NICU. Conclusion: The barriers influencing nurses' attitudes towards the implementation of neonatal palliative care are identified by the scientific literature, however care remains inconsistent. The definition of training strategies and organizational policies can reduce the impact of barriers faced by neonatal nurses in the provision ofpalliative care.

Quality of Life, Physical and Mental Health, and Economic Evaluation of Family Caregivers of Chronic Dependent Children: INFAPRINT Cohort Study Protocol.

Caregivers for children with complex chronic illnesses may experience emotional and physical strain, especially as concerns attention overload and the perceptions of their own psychosocial situation. These concerns, together with the additional financial cost and the socioeconomic inequalities that arise from caregiving responsibilities, create major challenges to the health status of this population group. A prospective analytical longitudinal study will be conducted, based on an exposed cohort of adult caregivers (parents or guardians) for children with complex chronic processes, to evaluate the impact of caregiving responsibilities on the health status of this population group. The practical implications of this study are of great significance for clinical practice. The results of this study have the potential to inform the decision-making process in the healthcare sector and guide future research initiatives. The findings of this study will provide crucial insights into the health-related quality of life of caregivers of children with complex chronic illnesses, which will be valuable in addressing the challenges faced by this population group. This information can be used to improve the availability and accessibility of appropriate health services and to facilitate the development of more equitable health outcomes for caregivers of children with complex chronic illnesses. By highlighting the extent to which this population is affected both physically and mentally, the study can contribute to the development of clinical practices that prioritize the health and well-being of caregivers in the care of children with complex chronic illnesses.

LBSUN208 Patient Education And Addressal Of Social Determinants Of Health: Key To Improvement In Diabetes Care

Abstract As per American Diabetes Association, diabetes is a 'complex chronic illness requiring continuous medical care with multifactorial risk reduction strategies beyond glycemic control'. In 2018, the prevalence of diabetes mellitus in the US population was 10.5% (34.2 million people). It is the seventh leading cause of death in the United States. The average healthcare expenditure is 2.3 times higher for diabetics than non-diabetics. The goal of diabetes care as per the American Diabetes Association and the American College of Cardiology is HbA1c less than 7%, blood pressure less than 140/90mmHg, and LDL cholesterol less than 100mg/dl. Only 19.2% of diabetic population meet all these criteria. At the Guthrie-Robert Packer Hospital, we use the 'Diabetic Bundle' as a quality metric for the standard of care for diabetic patients. It is a metric with diabetic patients seen in the past 2 years who have an active Guthrie PCP, with A1C less than 8 in the past 6 months, LDL less than 70 mg/dl (or currently prescribed a moderate or high dose statin) in the past year and age 40-75, and medical attention for nephropathy (a microalbumin test in the past year, or a nephrology visit, or are on an ACE/ARB, or have ESRD/CKD Stage 4) as a system numerator and total diabetes patients seen in the last 2 years who have an active Guthrie PCP as a system denominator. For the past few years, the resident's clinic has had lower compliance with the diabetic bundle. Multiple factors were responsible. Lack of awareness about the quality metric, discontinuity of care, failure to educate patients, poor patient involvement in diabetes care, socio-economic barriers like lack of insurance, poor family and social support, lack of transportation, poor patient compliance, and low health literacy were some of the identified factors. We conducted the prospective study to improve diabetes care by assessing 'diabetic bundle' compliance. Key interventions were focused on creating a multidisciplinary care team of the clinic director, care coordinator, informatics, nurse, resident, and faculty. Resident education regarding the diabetic bundle, patient education and involvement in diabetes care, outreach calls and mails to the non-compliant, involving the care coordinator in addressing social needs, and regular updating of the diabetes registry were some of the main interventions done during the study period. All these interventions contributed to improvement in the diabetic bundle but we believe that the most important factor in improving diabetes care was educating the patients, involving them in their diabetes care, and addressing their social determinants of health. Presentation: Sunday, June 12, 2022 12:30 p.m. - 2:30 p.m.

Admitting what is needed: How the health system and society can reduce hospitalizations for children with medical complexity.

Admitting what is needed: How the health system and society can reduce hospitalizations for children with medical complexity.

Using Partnerships to Create a Medical Specialty Camp for Youth with Diabetes

Complications associated with a complex chronic illness, specifically, type 1 diabetes, negatively impact youth as they struggle to maintain healthy lifestyles. Type 1 diabetes is the second most common chronic illness affecting youth as well as one of the most psychologically and behaviorally demanding illnesses. Fortunately, organized camps have been shown to positively influence long-term outcomes for youth. Family Diabetes Camp, the only family medical program in the state where this study occurred, was created in collaboration with a local university, a diabetes center at a hospital, and a chapter of the Lions Club. This collaborative camp program aimed to test the effect of active participation in a Family Diabetes Camp upon youth outcomes for campers with type 1 diabetes. Specifically, the purpose was to evaluate the impact of a collaborative medical camp on campers’ resilience and youth developmental outcomes (e.g., independence). Family Diabetes Camp was designed using Outcome-Focused Programming (OFP) to promote positive youth development. The Family Diabetes Camp included 50 campers for the pre-test and post-test (n= 19 males and n= 31 females). While there were no statistically significant differences from pretest (M=4.97, SD= .53) to post-test scores (M=5.01, SD= .46), with t(50) = -.56, p= .57) researchers found a slight increase in resilience from pre to post-test. Using a retrospective measure, campers showed gains in the seven critical youth development outcomes identified by the American Camp Association. Finally, campers learned new knowledge about site injection, carbohydrate counting, and the use of exercise to help manage their diabetes. The impact associated with adapting activities and an environment to encourage, analyze, and challenge resilient behaviors is essential in encouraging independence, shared experiences, and effective disease management for youth living with type 1 diabetes. The camp, solely staffed by volunteers, included physicians, diabetes educators, certified therapeutic recreation specialists, dietitians, nurses, pump specialists, recreation professionals and students, and Lions Club Members. The camp program is unique not only in how it fills a void for youth with type 1 diabetes but how three large organizations work in concert to meet the needs of entire families. These types of data can be instrumental in establishing more camps and other out of school time programming that positively impacts quality of life, health care cost, and mortality among youth with type 1 diabetes.

"I Didn't Want My Baby to Pass, But I Didn't Want Him Suffering Either": Comparing Bereaved Parents' Narratives With Nursing End-of-Life Assessments in the Pediatric Intensive Care Unit.

Little is known about how nursing care at the end of a child's life impacts long-term parental bereavement. We aimed to explain, contextualize, and examine comparisons between quantitative trends in children's end-of-life care and parents' qualitative perceptions. We used a mixed methods design, combining quantitative data from the RESTORE clinical trial with qualitative interviews with bereaved parents. Patients who died during RESTORE were included in quantitative analyses. A subset of their parents was interviewed 7 to 11 years later. The quantitative analyses included 104 children. Eight parents were interviewed; 4 had a child die after cancer, and 4 had a child die after a complex chronic illness. Quantitatively, patients' pain and sedation scores were generally comfortable. Children died with multiple invasive devices in place. Parents' descriptions of their child's comfort and critical care requirements differed by illness trajectory (cancer, complex chronic illness). Parents' memories of their child's suffering aligned with peaks in clinical scores, rather than averages. Invasive devices and equipment altered parents' ability to make meaningful final memories with the dying child. Pediatric intensive care clinicians may need to broaden how they attend to dying children's pain and corresponding parental distress, as parents' memories of their dying child's suffering persist for years.

0608 Characterization of Sleep in Emerging Adults with Cystic Fibrosis on CFTR Modulator Therapy

Abstract Introduction Sleep disturbances are common among youth and adults with cystic fibrosis (CF). However, few CF programs regularly screen for sleep disorders beyond sleep disordered breathing. Emerging adults (18 to 25 years) with CF are a unique population, experiencing changes in sleep and life transitions (e.g., education, work, relationships), while also managing a complex chronic illness. CF transmembrane regulator (CFTR) modulator therapies have significantly improved medical and quality of life outcomes, yet the impact on sleep remains to be determined. Methods Emerging adults with CF (EA-CF; n=22, 59.1% female) and without CF (EA-Control; n=17, 76.5% female) completed an online survey that queried (1) symptoms of restless legs syndrome, parasomnias, and daytime sleepiness, and (2) frequency of exogenous sleep aid use (i.e., prescription medications, melatonin, over-the-counter [OTC] sleep aids, and marijuana/CBD). EA-CF were also asked about perceived changes in falling asleep, night waking frequency and duration, and daytime sleepiness since starting CFTR modulator therapy. Results Sleep disorder symptoms were more frequently reported by EA-CF compared to EA-Control, including restless legs syndrome (31.8% vs. 23.5%, small effect size), parasomnias (40.9% vs. 29.4%, small effect size), and excessive daytime sleepiness/fatigue (50.0% vs. 23.5%, medium effect size). OTC sleep aid use did not differ by group (EA-CF 31.8% vs. EA-Control 35.3%), but the frequency was significantly greater in EA-CF (&amp;gt;once/month: EA-CF 27.3% vs. EA-Control 0%, &amp;lt;once/month: EA-CF 4.5% vs. EA-Control 35.3%, large effect size). More EA-CF reported CBD/marijuana use compared to EA-Control (36.4% vs. 17.6%, small effect size), with 31.8% of EA-CF reporting use of CBD/marijuana at least several nights a week (vs. 5.9% of EA-Control, small effect size). Since starting CFTR modulatory therapy, 27.3% of EA-CF reported falling asleep faster, 31.8% reported fewer night wakings, 36.4% reported shorter night wakings, and 36.4% reported reduced daytime sleepiness. Conclusion This study is one of the first to examine sleep in emerging adults with CF on CFTR modulator therapy, with results highlighting the importance of screening for sleep disorders other than sleep disordered breathing, use of exogenous sleep aids to facilitate sleep, and the benefits of CFTR modulator therapy on sleep. Data collection is ongoing. Support (If Any) Natalie V. Zucker Award

Integrated psychological care in pediatric hospital settings for children with complex chronic illness and their families: a systematic review

Objective To synthesize and critically evaluate evidence on the effectiveness of integrated psychological care models for children with complex chronic illness within pediatric hospital settings and provide recommendations for successful implementation. Design Six electronic databases (Medline, Cochrane, Embase, PsycINFO, Scopus, CINAHL) were systematically searched for English language studies including families of children aged 0–17 years with complex chronic illness. Eligible studies reported on psychology or neuropsychology screening, assessment, intervention, or services provided within a pediatric hospital setting. Results Fifteen studies were identified for review; nine assessed a psychological service, five examined psychosocial screening, and one examined a neuropsychology service. Three studies demonstrated the effectiveness of integrated psychological services in improving child or parent physical, psychological, or behavioral health outcomes. Uptake of psychosocial screening was high (84–96%), but only 25–37% of children or families identified as ‘at-risk’ engaged with on-site psychology services. Integrated psychological services offering consultations at the same time and location as the child’s medical visit reported the highest rates of uptake (77–100%). Conclusions The available evidence supports co-location of child medical and psychological services. A more consistent and comprehensive approach to the assessment of patient- and caregiver-reported outcomes and implementation effectiveness is recommended.