First trans-diagnostic experiences with a novel micro-choice based concentrated group rehabilitation for patients with low back pain, long COVID, and type 2 diabetes: a pilot study.

BACKGROUND: The health care is likely to break down unless we are able to increase the level of functioning for the growing number of patients with complex, chronic illnesses. Hence, novel high-capacity and cost-effective treatments with trans-diagnostic effects are warranted. In accordance with the protocol paper, we aimed to examine the acceptability, satisfaction, and effectiveness of an interdisciplinary micro-choice based concentrated group rehabilitation for patients with chronic low back pain, long COVID, and type 2 diabetes. METHODS: Patients with low back pain > 4 months sick-leave, long COVID, or type 2 diabetes were included in this clinical trial with pre-post design and 3-month follow-up. The treatment consisted of three phases: (1) preparing for change, (2) the concentrated intervention for 3-4 days, and (3) integrating change into everyday life. Patients were taught and practiced how to monitor and target seemingly insignificant everyday micro-choices, in order to break the patterns where symptoms or habits contributed to decreased levels of functioning or increased health problems. The treatment was delivered to groups (max 10 people) with similar illnesses. Client Satisfaction Questionnaire (CSQ-8)) (1 week), Work and Social Adjustment Scale (WSAS), Brief Illness Perception Questionnaire (BIPQ), and self-rated health status (EQ-5D-5L) were registered at baseline and 3-month follow-up. RESULTS: Of the 241 included participants (57% women, mean age 48 years, range 19-84), 99% completed the concentrated treatment. Treatment satisfaction was high with a 28.9 (3.2) mean CSQ-8-score. WSAS improved significantly from baseline to follow-up across diagnoses 20.59 (0.56) to 15.76 (0.56). BIPQ improved from: 22.30 (0.43) to 14.88 (0.47) and EQ-5D-5L: 0.715 (0.01) to 0.779 (0.01)), all P<0.001. CONCLUSIONS: Across disorders, the novel approach was associated with high acceptability and clinically important improvements in functional levels, illness perception, and health status. As the concentrated micro-choice based treatment format might have the potential to change the way we deliver rehabilitation across diagnoses, we suggest to proceed with a controlled trial. TRIAL REGISTRATION: ClinicalTrials.gov NCT05234281.

Predictors of Transition Outcomes in Cystic Fibrosis: Analysis of National Patient Registry and CF RISE (Responsibility. Independence. Self-care. Education) Data.

OBJECTIVE: To identify predictors of change in lung function and body weight during health care transition in cystic fibrosis (CF). METHODS: We conducted a retrospective cohort study using data from the CF Foundation Patient Registry and the web-based transition program CF RISE (Responsibility. Independence. Self-care. Education) for patients aged 16-25 years who transitioned to adult care from 2013 through 2019. We modeled change in forced expiratory volume in 1 second % predicted and weight using linear regression fit with generalized estimating equations. Predictors included gap in care (time between last pediatric and first adult outpatient visit), transition program engagement, and sociodemographic and medical factors. RESULTS: Among 12 420 adolescents and young adults (AYAs), 3876 transitioned to adult care with a median gap in care of 7.6 months. Patients from CF centers with greater rates of CF RISE engagement had improved lung function and weight at their first adult outpatient visit. Coverage on a parent's insurance plan and absence of CF complications predicted increased lung function. History of a nonlung transplant and sinus disease predicted increased weight. Comorbid diabetes mellitus and gaps in care >3 months predicted decreased lung function with longer gaps in care associated with greater decrease. A gap in care of 6-9 months predicted decreased weight. Control variables including baseline forced expiratory volume in 1 second and weight, and exacerbation status were also statistically significant. CONCLUSIONS: Findings suggest 2 promising targets to improve transition of AYAs with CF: increasing AYA engagement in CF RISE and reducing gaps in care during the transition period.

Homelessness and Type 2 Diabetes: A Qualitative Study of Facilitators and Barriers to Self-Management and Medication Adherence.

PURPOSE: In this study, we explore the barriers and facilitators to diabetes medication adherence and self-management for people with type 2 diabetes who have experienced homelessness. METHODS: We conducted five focus groups and two interviews with 26 participants. Our multi-disciplinary analysis team utilized principles of grounded theory and conducted thematic analysis with an inductive, iterative process to identify central themes. RESULTS: The majority of participants identified as Black/African American and over half stayed in shelters or had no steady place to stay at enrollment. Three key themes emerged regarding medication adherence and diabetes self-management for people who have experienced homelessness: personal autonomy and security, predictability and stability, and supportive, knowledgeable relationships (both social and medical). We define personal autonomy and security as individual agency and choice when making decisions related to one's health and well-being as well as protection from risk or harm to one's physical or psychological well-being, belongings, or means of income. Predictability and stability take place through the development of a system of connections and routines built over time where individuals can reliably adopt and maintain diabetes self-management activities. Supportive, knowledgeable relationships include medical and social relationships that offer encouragement, information, and hands-on care promoting diabetes self-management and connection to clinical care and resources. Participants also highlighted a "domino effect" where a cascade of events negatively and consequently impacted their health and well-being. We describe the interactions of these themes, the intersection of structural vulnerability and individual social risks, and resulting impacts on medication adherence and diabetes self-management. CONCLUSIONS: Our findings highlight the structural vulnerabilities impacting people experiencing homelessness and identify inflection points of opportunity at structural and individual levels to strengthen diabetes medication adherence and self-management. This understanding can inform policy change and future tailored diabetes interventions.

Checkup Visits in Adult Federally Qualified Health Center Patients: a Retrospective Cohort Study.

BACKGROUND: Checkup visits (i.e., general health checks) can increase preventive service completion and lead to improved treatment of new chronic illnesses. After the onset of the COVID-19 pandemic, preventive service completion decreased in many groups that receive care in safety net settings. OBJECTIVE: To examine potential benefits associated with checkups in federally qualified health center (FQHC) patients. DESIGN: Retrospective cohort study, from March 2018 to February 2022. PATIENTS: Adults at seven FQHCs in Illinois. INTERVENTIONS: Checkups during a two-year Baseline (i.e., pre-COVID-19) period and two-year COVID-19 period. MAIN MEASURES: The primary outcome was COVID-19 period checkup completion. Secondary outcomes were: mammography completion; new diagnoses of four common chronic illnesses (hypertension, diabetes, depression, or high cholesterol), and; initiation of chronic illness medications. KEY RESULTS: Among 106,114 included patients, race/ethnicity was most commonly Latino/Hispanic (42.1%) or non-Hispanic Black (30.2%). Most patients had Medicaid coverage (40.4%) or were uninsured (33.9%). While 21.0% of patients completed a checkup during Baseline, only 15.3% did so during the COVID-19 period. In multivariable regression analysis, private insurance (versus Medicaid) was positively associated with COVID-19 period checkup completion (adjusted relative risk [aRR], 1.15; 95% confidence interval, [CI], 1.10-1.19), while non-Hispanic Black race/ethnicity (versus Latino/Hispanic) was inversely associated with checkup completion (aRR, 0.89; 95% CI, 0.85-0.93). In secondary outcome analysis, COVID-19 period checkup completion was associated with 61% greater probability of mammography (aRR, 1.61; 95% CI, 1.52-1.71), and significantly higher probability of diagnosis, and treatment initiation, for all four chronic illnesses. In exploratory interaction analysis, checkup completion was more modestly associated with diagnosis and treatment of hypertension and high cholesterol in some younger age groups (versus age ≥ 65). CONCLUSIONS: In this large FQHC cohort, checkup completion markedly decreased during the pandemic. Checkup completion was associated with preventive service completion, chronic illness detection, and initiation of chronic illness treatment.

Sleep duration and association with cardiometabolic health in adolescents and adults with type 1 diabetes: Results from the BCQR-T1D study.

AIM: Type 1 diabetes (T1D) increases the risk of morbidity and mortality from cardiovascular disease, and insufficient sleep is prevalent. Emerging evidence suggests a link between sleep and cardiometabolic health, but this has not been examined across the lifespan in individuals with T1D. We aimed to examine associations between sleep and cardiometabolic health in adolescents and adults with T1D in a secondary analysis of data from a 4-week double-blind, random-order, placebo-controlled crossover trial of bromocriptine quick release (BCQR) therapy with a 4-week washout in between conditions. MATERIALS AND METHODS: Forty-two adults (19-60 years) and 42 adolescents (12-18 years) with T1D >9 months completed 1 week of home monitoring with wrist-worn actigraphy to estimate sleep duration and continuous glucose monitoring, anthropometrics, arterial stiffness, magnetic resonance imaging (adolescents only), and fasting laboratory testing at each treatment phase. RESULTS: Sixty-two per cent of adolescents and 74% of adults obtained <7 h of sleep per night at baseline. After adjustment for age, sex and diabetes duration, baseline sleep <7 h per night was associated with a higher body mass index, a higher waist circumference, a higher systolic blood pressure, worse arterial stiffness and a lower estimated insulin sensitivity (all p < .05). When examined by age group, associations between sleep duration and cardiometabolic health outcomes remained significant, predominantly for adolescents. In adolescents only, wake time was significantly later (p = .027) and time in bed was significantly longer with BCQR versus placebo (p = .049). CONCLUSIONS: Objectively measured sleep <7 h per night was prevalent in adolescents and adults with T1D and associated with poorer cardiometabolic health markers. Small changes in sleep were seen following BCQR treatment in adolescents only. Sleep may be an important and novel target for improving cardiometabolic health in individuals with T1D.

Behavior Change Techniques Involved in Physical Activity Interventions for Children With Chronic Conditions: A Systematic Review.

BACKGROUND: Behavior change techniques (BCTs) have been extensively used in physical activity interventions for children, however, no systematic reviews have synthesized their effects. PURPOSE: The present review aimed to identify the most promising BCTs used in physical activity interventions associated with (i) increased physical activity behavior and (ii) positive psychosocial outcomes in children with chronic conditions. METHODS: A systematic search of 6 databases identified 61 articles as eligible for inclusion. Data, including BCTs, were extracted from these studies and analyzed descriptively. Due to the heterogeneity of interventions, chronic conditions, and outcome measures, a meta-analysis was not conducted. RESULTS: Social support (unspecified), graded tasks, generalization of target behavior, and credible source were the most commonly reported and most promising (i.e., present in 2+ studies evidencing significant effects) BCTs across all studies. These BCTs were found to be especially relevant to improving psychosocial outcomes in the short- and long-term and improving physical activity behaviors in the long-term. Meanwhile, to improve short-term physical activity behaviors, in addition to social support (unspecified), action planning, goal setting (behavior), and problem solving were found to be promising BCTs. CONCLUSIONS: The BCTs identified in this review may be relevant to incorporate when planning future interventions to support physical activity and psychosocial outcomes for children with chronic conditions.

Children with chronic conditions experience several barriers to engaging in physical activity. In order to overcome these unique barriers, physical activity interventions would need to incorporate specific strategies (called behavior change techniques [BCTs]) to encourage physical activity participation. The present review sought to identify BCTs that were successfully applied to physical activity interventions to increase physical activity behavior and improve psychosocial outcomes for children with chronic conditions. Across the 61 studies included within this review, the most commonly applied BCTs were providing instruction, allowing opportunities to practice the behavior, and demonstration of the behavior. Social support was also found to be the a successful BCT to increase physical activity behavior and improve psychosocial outcomes in the short- and long-term. Future physical activity interventions aimed at supporting physical activity behavior and psychosocial outcomes of children with chronic conditions could benefit from incorporating these strategies within intervention planning and delivery.

Post-COVID Conditions in US Primary Care: A PRIME Registry Comparison of Patients With COVID-19, Influenza-Like Illness, and Wellness Visits.

PURPOSE: COVID-19 is a condition that can lead to other chronic conditions. These conditions are frequently diagnosed in the primary care setting. We used a novel primary care registry to quantify the burden of post-COVID conditions among adult patients with a COVID-19 diagnosis across the United States. METHODS: We used the American Family Cohort, a national primary care registry, to identify study patients. After propensity score matching, we assessed the prevalence of 17 condition categories individually and cumulatively, comparing patients having COVID-19 in 2020-2021 with (1) historical control patients having influenza-like illness in 2018 and (2) contemporaneous control patients seen for wellness or preventive visits in 2020-2021. RESULTS: We identified 28,215 patients with a COVID-19 diagnosis and 235,953 historical control patients with influenza-like illness. The COVID-19 group had higher prevalences of breathing difficulties (4.2% vs 1.9%), type 2 diabetes (12.0% vs 10.2%), fatigue (3.9% vs 2.2%), and sleep disturbances (3.5% vs 2.4%). There were no differences, however, in the postdiagnosis monthly trend in cumulative morbidity between the COVID-19 patients (trend = 0.026; 95% CI, 0.025-0.027) and the patients with influenza-like illness (trend = 0.026; 95% CI, 0.023-0.027). Relative to contemporaneous wellness control patients, COVID-19 patients had higher prevalences of breathing difficulties and type 2 diabetes. CONCLUSIONS: Our findings show a moderate burden of post-COVID conditions in primary care, including breathing difficulties, fatigue, and sleep disturbances. Based on clinical registry data, the prevalence of post-COVID conditions in primary care practices is lower than that reported in subspecialty and hospital settings.

Poverty and the wellbeing of children with sickle cell disease: The mediating role of parenting stress.

BACKGROUND: Living in poverty in the midst of caring for a child with sickle cell disease (SCD) presents with challenges that may be overwhelming for caregivers. Prior research has shown a relationship between poverty and poor outcomes in children; however, no study has investigated the mediating role of parenting stress on health-related quality of life (HRQOL) for such children. PROCEDURE: A total of 150 patients, ages 8-17 years and their parents, were enrolled and completed measures of parenting stress (caregivers) and HRQOL (patients). Caregivers also completed a demographic information questionnaire, which was used to determine poverty status. The Sobel test was used to analyze the association between poverty and HRQOL by way of parenting stress. RESULTS: The series of linear regression results show poverty was a significant predictor for decreased HRQOL (B = -7.01, p = .05) among pediatric patients with SCD. Moreover, the regression coefficient measuring the indirect effect of the model measuring the mediating role of parenting stress was statistically significant (B = -1.05, p = .05). CONCLUSION: The current study found an association between poverty status and HRQOL scores by way of parenting stress. Findings highlight the need for appropriate resource allocation to caregivers in addition to pediatric patients living with SCD.

Beyond presence of symptoms: Self-reported psychosocial distress interference among outpatient youth with cancer and other life-limiting conditions.

BACKGROUND: Youth with life-limiting conditions face significant psychosocial challenges (e.g., symptoms of anxiety, depression, and pain) throughout illness and treatment. Without appropriate intervention, this can negatively affect long-term outcomes (e.g., disease management, health-related quality of life). Prompt identification and appropriate attention to distress can mitigate these effects. We aimed to determine the prevalence and severity of distress interference among outpatient youth with cancer and other life-limiting conditions, using the Checking IN screener. PROCEDURE: Within a larger study across four hospital centers, English-speaking pediatric outpatients aged 8-21, and a caregiver-proxy-reporter, completed a brief distress screener. Descriptive analyses were used to characterize the sample and evaluate reported distress symptoms. RESULTS: Checking IN was completed by 100 participants, aged 8-21 (M = 14.27, SD = 3.81); caregivers completed an equivalent proxy screener. Youth most frequently endorsed fatigue (moderate: n = 50, 50.0%; high: n = 21, 21.0%), paying attention (moderate: n = 45, 45.0%; high: n = 16, 16.0%), and sleep difficulty (moderate: n = 46, 46.0%; high: n = 13; 13.0%) as problematic. Caregivers proxy reported fatigue (moderate: n = 46, 46.0%; high: n = 32, 32.0%), worry (moderate: n = 56, 56.0%; high: n = 10, 10.0%), and sleep difficulty (moderate: n = 47, 47.0%; high: n = 14; 14.0%) as most problematic. Group differences between youth and caregiver responses were not significant. CONCLUSIONS: Youth self-report via Checking IN can detect psychosocial distress interference. By directing resources based on real-time assessment of symptom interference, there is potential to simplify outpatient psychosocial screening and improve referral timeliness and specificity, thus allowing for more effective attention to evolving symptoms of distress.

Trust in the Transplant Team Associated With the Level of Chronic Illness Management-A Secondary Data Analysis of the International BRIGHT Study.

A trustful relationship between transplant patients and their transplant team (interpersonal trust) is essential in order to achieve positive health outcomes and behaviors. We aimed to 1) explore variability of trust in transplant teams; 2) explore the association between the level of chronic illness management and trust; 3) investigate the relationship of trust on behavioral outcomes. A secondary data analysis of the BRIGHT study (ID: NCT01608477; https://clinicaltrials.gov/ct2/show/NCT01608477?id=NCT01608477&rank=1) was conducted, including multicenter data from 36 heart transplant centers from 11 countries across four different continents. A total of 1,397 heart transplant recipients and 100 clinicians were enrolled. Trust significantly varied among the transplant centers. Higher levels of chronic illness management were significantly associated with greater trust in the transplant team (patients: AOR= 1.85, 95% CI = 1.47-2.33, p < 0.001; clinicians: AOR = 1.35, 95% CI = 1.07-1.71, p = 0.012). Consultation time significantly moderated the relationship between chronic illness management levels and trust only when clinicians spent ≥30 min with patients. Trust was significantly associated with better diet adherence (OR = 1.34, 95%CI = 1.01-1.77, p = 0.040). Findings indicate the relevance of trust and chronic illness management in the transplant ecosystem to achieve improved transplant outcomes. Thus, further investment in re-engineering of transplant follow-up toward chronic illness management, and sufficient time for consultations is required.

Impact of pediatric inflammatory bowel disease on caregivers' work productivity: A multicenter study by the SEGHNP.

OBJECTIVES/BACKGROUND: Pediatric inflammatory bowel disease (PIBD) poses significant challenges not only to patients but also to their families, particularly affecting the work productivity of caregivers. This Spanish multicenter study aims to elucidate the extent of this impact. MATERIALS AND METHODS: A cross-sectional, multicenter study was conducted between February 2021 and June 2023, involving parents or caregivers of PIBD patients aged 10-18 years. The study utilized the Work Productivity and Activity Impairment (WPAI) questionnaires alongside assessing disease activity and socioeconomic status to quantify work productivity loss and its economic implications. RESULTS: The study included 370 patients from 37 centers, highlighting a significant loss of work productivity among caregivers, especially mothers. The global unemployment rate was notably higher in this group compared to national averages (22.9% vs. 13.8%), particularly among females (30.7% vs. 13.7%), with absenteeism and presenteeism rates (26.4% and 39.9%) significantly impacting the caregivers' ability to work. The study also identified active disease and treatment with biologics or steroids as risk factors for increased work productivity loss. CONCLUSIONS: Caregivers of children with inflammatory bowel disease face considerable challenges in maintaining employment, with a notable economic impact due to lost work hours. The findings underscore the need for targeted support and interventions to assist these families, suggesting potential areas for policy improvement and support mechanisms to mitigate the socioeconomic burden of PIBD on affected families.

Education and employment outcomes in pediatric chronic kidney disease.

As outcomes and survival for children with chronic kidney disease (CKD) have improved over the last 30 years, there is an emerging need to characterize and understand later educational and employment outcomes across the spectrum of pediatric CKD severity-ranging from mild CKD to requirement for dialysis and kidney transplantation. Although large-scale research on the topic of long-term educational and employment outcomes in the pediatric CKD population is relatively scarce, the existing literature does support that children across the spectrum of CKD severity are at risk for education-related difficulties including chronic school absenteeism. These education-related difficulties are compounded by well-described neurocognitive deficits-particularly in the domain of executive functioning-that may potentially perpetuate the risk for academic underachievement. This is particularly concerning given that data from the general pediatric population suggest that childhood academic underachievement is associated with higher likelihood of un-/underemployment in adulthood. This review highlights what is known about educational and employment outcomes among persons with a history of childhood CKD, as well as suggestions for interventions to improve educational outcomes for this population.

Supporting healthy sleep: a qualitative assessment of adolescents with type 1 diabetes and their parents.

OBJECTIVE: Poor sleep health is common in adolescence due to a combination of physiological, psychosocial, and environmental factors. Adolescents with type 1 diabetes (T1D) may be at increased risk for poor sleep health due to physiological and behavioral aspects of diabetes and its management. This article describes a qualitative analysis of interviews with adolescents with T1D and their parents about facilitators and barriers to sleep health and family strategies to balance teens' sleep with competing demands. METHODS: Separate interviews were conducted with 20 adolescents with T1D and 20 parents. Interviews were recorded and transcribed verbatim and analyzed thematically. Participants were on average 15.8 ± 1.2 years old, 45% female, and 85% non-Hispanic White. RESULTS: Overnight diabetes management was the most frequently reported barrier to sleep. Families reported different strategies for taking responsibility of overnight diabetes management, which differentially impacted sleep. Families worked to balance diabetes management and sleep with other aspects of adolescent life, including school demands, social activities, and electronics use. Facilitators to healthy sleep identified by families included diabetes assistive technology and maintaining a consistent sleep/wake schedule. Both adolescents and parents voiced beliefs that their diabetes care team is not able to help with sleep health. CONCLUSIONS: Pediatric psychologists should be aware of the specific sleep barriers experienced by adolescents with T1D and their parents. A focus on overnight diabetes management strategies may facilitate psychologists' support of families in the adolescent's transition to independent diabetes management. Research is needed on the impact of optimizing sleep health in adolescents with T1D.

Perceived transition readiness among adolescents and young adults with neurofibromatosis type 1 and plexiform neurofibromas: a cross-sectional descriptive study.

OBJECTIVES: Neurofibromatosis type 1 (NF1) is a genetic cancer predisposition syndrome that can impact multiple organ systems and is associated with plexiform neurofibroma tumors, requiring care from birth through adulthood. Adolescents and young adults (AYAs) with NF1 face several barriers to transition from pediatric to adult care. This cross-sectional study aimed to assess transition readiness in this population and to evaluate relationships between specific NF1 symptoms and transition readiness. METHODS: AYAs (aged 16-24) enrolled in existing studies related to NF1 were eligible. AYAs and their parents completed measures of transition readiness (Transition Readiness Assessment Questionnaire version 4 [TRAQ-4]), and AYAs also completed a transition readiness interview (UNC TRxANSITION). RESULTS: Thirty-eight AYAs (mean age = 19.95 ± 2.68 years) participated in the study. Average TRAQ scores indicated that AYAs were still learning Self-Management skills (M = 3.37, SD = 1.08) and Self-Advocacy skills (M = 3.98, SD = 0.67). Older AYAs had higher TRAQ scores for Self-Management (r = 0.70, p < .001) and Self-Advocacy (r = 0.41, p = .011) than younger AYAs. Parents and AYAs had similar TRAQ scores. About one third of AYAs (37.8%, n = 14) expressed uncertainty about how NF1 might affect them in the future. The remaining AYAs mostly expressed concerns regarding tumor growth, pain, or cancer. CONCLUSIONS: In this small study, preliminary findings suggest that AYAs with NF1 express confidence in many areas of transition readiness but continue to require support, particularly with Self-Management skills. Given the gaps in understanding of future health risks, AYAs with NF1 would benefit from early assessment, psychoeducation, and support for transition readiness to adult care.

Psychosocial Interventions for Children and Young People With Visible Differences Resulting From Appearance-Altering Conditions, Injury, or Treatment Effects: An Updated Systematic Review.

OBJECTIVE: Children and young people with visible differences can experience psychosocial difficulties, such as anxiety and teasing by others. Interventions targeting difficulties have previously been reviewed by Jenkinson et al. This review aimed to identify and critically assess recent studies evaluating the effectiveness of psychosocial interventions for children and young people with visible differences on psychosocial wellbeing, self-esteem, and social experiences and compare the findings with Jenkinson et al. using a replacement review process. METHODS: Inclusion criteria are as follows: studies with participants aged 0-18 years with visible differences; investigating a psychosocial intervention; including comparison with an alternative intervention, control group, or pre- and post-intervention; and including a quantitative measure assessed pre- and post-intervention. Exclusion criteria are as follows: participants with body dysmorphic disorder or appearance changes due to eating disorders or obesity and studies not written in English. MEDLINE, AMED, and PsycInfo were searched and grey literature was included. Results were reviewed against eligibility criteria, data were extracted, and studies were evaluated using the Cochrane Risk of Bias 2 tool. RESULTS: Using Jenkinson et al. as one source of studies, 24 studies were included evaluating a range of interventions such as social interaction skills training, residential social camps, and cognitive behavioral therapy. Risk of bias was high in 20 studies and of some concern in four studies. CONCLUSION: There is some evidence of the effectiveness of hypnotherapy, a relaxation response resiliency program, integrative body-mind-spirit group, and therapeutic patient education, but more rigorous research is needed to confirm their impact on psychosocial outcomes.

Brief parenting intervention (Triple P) for families of children with eczema: a randomized controlled trial.

OBJECTIVE: To evaluate the efficacy and costs of a brief, group-delivered parenting intervention for families of children with eczema. METHODS: A randomized controlled trial design was used. Families attending the Queensland Children's Hospital and from the community (n = 257) were assessed for eligibility (child 2-10 years, diagnosed with eczema, prescribed topical corticosteroids). Families who consented to participate (N = 59) were assessed at baseline for clinician-rated eczema severity, parent-reported eczema symptom severity, and electronically-monitored topical corticosteroid adherence (primary outcomes); and parenting behavior, parents' self-efficacy and task performance when managing eczema, eczema-related child behavior problems, and child and parent quality of life (secondary outcomes). Families were randomized (1:1, unblinded) to intervention (n = 31) or care-as-usual (n = 28). The intervention comprised two, 2-hr Healthy Living Triple P group sessions (face-to-face/online) and 28 intervention families attended one/both sessions. All families were offered standardized eczema education. Families were reassessed at 4-weeks post-intervention and 6-month follow-up, with clinician-raters blinded to condition. Costs of intervention delivery were estimated. RESULTS: Multilevel modeling across assessment timepoints showed significant intervention effects for ineffective parenting (d = .60), self-efficacy (d = .74), task performance (d = .81), and confidence with managing eczema-related child behavior (d = .63), but not disease/symptom severity, treatment adherence or quality of life. Mean cost per participating family with parenting behavior (clinically) improved was $159. CONCLUSIONS: Healthy Living Triple P is effective in reducing ineffective parenting practices and improving parents' self-efficacy and task performance when managing children's eczema and eczema-related behavior difficulties. There was no effect on disease/symptom severity, treatment adherence, or quality of life. CLINICAL TRIAL REGISTRATION: ACTRN12618001332213.

Latent profiles and predictors of barriers to care in Swiss children and adolescents with rare diseases.

OBJECTIVE: Children and adolescents with rare diseases face significant barriers when accessing healthcare. We aimed to assess and predict these barriers and investigate associations with health-related quality of life (HRQoL). METHOD: We conducted a cross-sectional survey of Swiss parents (N = 189) of children with rare diseases including the Barriers to Care Questionnaire (BCQ), containing six barriers and the Pediatric Quality of Life Inventory (PedsQL). Latent profile analysis (LPA) was used to uncover distinct classes, which were compared using chi-square tests and Mann-Whitney U tests. Relevant medical and sociodemographic class predictors were identified using Elastic Net regression, followed by regression analysis to investigate their role in predicting barriers to care and examine the effects of these classes on HRQoL. RESULTS: Two distinct groups were identified, a higher barriers class (59%) and a lower barriers class (41%). In the higher barriers class, participants showed elevated scores across all subscales and specifically on pragmatics and expectations. More barriers to care were linked to a nonstable disease course (OR = 2.27, p = .002) and a diagnosis after the age of 3 months (OR = 2.17, p = .006). Individuals in the higher barriers class exhibited more psychological comorbidities (p = .044), congenital malformations/deformations/chromosomal abnormalities (p=.042), and medical misdiagnoses (p = .006). Children in the higher barriers class had significantly lower PedsQL scores compared to the lower barriers class (p <.05). CONCLUSION: This study highlights the need for comprehensive assessment of barriers to pediatric care in rare diseases, offering potential entry points for targeted interventions.

Psychological Distress Among Parents of Children With Chronic Health Conditions and Its Association With Unmet Supportive Care Needs and Children's Quality of Life.

OBJECTIVE: To assess parent psychological distress in families of children with common chronic health conditions (CHC) and to explore relationships between parent psychological distress, unmet supportive care needs and children's quality of life (QoL). METHOD: Cross-sectional study involving parents of children diagnosed with a common CHC between 0 and 12 years of age and who had received treatment within the last 5 years. Eligible parents completed an online survey, that included the Depression Anxiety Stress Scale (DASS-21) assessing distress in parents and a 34-item assessment of unmet supportive care needs across 6 domains. Parents completed ratings of their child's current functioning (QoL) using the 23-item PedsQL. Multivariable regression models examined the relative association between unmet needs, children's QoL and parents' depression, anxiety, and stress. RESULTS: The sample consisted of 194 parents of children with congenital heart disease (n=97; 50%), diabetes (n=50; 26%), cancer (n=39; 20%), and asthma (n=8; 4%). A significant proportion of parents had moderate-severe symptoms of depression (26%), anxiety (38%), and stress (40%). Of the PedsQL scales, the poorest outcomes were found for emotional and school functioning. Multivariable analyses showed that both higher unmet needs and poorer child emotional functioning were associated with parent depression, anxiety, and stress symptoms. CONCLUSION: Evidence linking parent distress symptoms to higher unmet needs and poorer child emotional functioning suggests these factors may be targets for interventions to alleviate parent distress. Longitudinal research using larger samples is required to replicate findings, and clarify the magnitude and direction of associations.

Discrepancies in perceived family resilience between adolescents with chronic illness and parents: using response surface analysis to examine the relationship with adolescents' psychological adjustment.

BACKGROUND: This study aimed to explore discrepancies in adolescents with chronic illness and their parents' perceptions of family resilience, as well as the relationship between these differences and the psychological adjustment of adolescents with chronic illness. METHODS: A cross-sectional study was conducted. A total of 264 dyads of parents (77.7% mothers, mean age 41.60 years, SD = 6.17) and adolescents (48.5% girls, mean age 12.68 years, SD = 2.11) with chronic illness were recruited through convenience sampling from three children's hospitals in Wenzhou, Hangzhou, and Shanghai, China between June 2022 and May 2023. The Chinese version of the Family Resilience Scale and the Psychological Adjustment Scale, which are commonly used measures with good reliability and validity, were employed to assess family resilience and psychological adaption, respectively. The data were analyzed using polynomial regression and response surface analysis. RESULTS: Adolescents with chronic illness reported higher family resilience than their parents (t=-2.80, p < 0.05). The correlations between family resilience and adolescents' psychological adjustment reported by the adolescents (r = 0.45-0.48) were higher than parents (r = 0.18-0.23). In the line of congruence, there were positive linear (a1 = 1.09-1.60, p < 0.001) and curvilinear (a2=-1.38∼-0.72, p < 0.05) associations between convergent family resilience and adolescents' psychological adjustment. In the line of incongruence, when adolescents reported lower family resilience than parents, adolescents had a lower level of psychological adjustment (a3=-1.02∼-0.45, p < 0.05). Adolescents' sociability decreased when the perceived family resilience of parent-adolescent dyads converged (a4 = 1.36, p < 0.01). CONCLUSION: The findings highlighted the importance of considering the discrepancies and congruence of family resilience in the parent-child dyads when developing interventions to improve the psychological adjustment of adolescents with chronic illness. Interventions aimed at strengthening family communication to foster the convergence of perceptions of family resilience in parent-adolescent dyads were warranted.

Factors associated with the level of self-management in elderly patients with chronic diseases: a pathway analysis.

BACKGROUND: To analyze the effects and pathways of factors such as psychological capital, family functioning, and sources of meaning in life on the level of self-management in elderly patients with chronic diseases and to provide a basis for the development of relevant nursing interventions in the future. METHODS: Convenience sampling was used to select elderly patients with chronic diseases who underwent medical checkups and consultations at three community hospitals in Jinzhou city from March 2023 to October 2023, and the self-designed General Information Questionnaire (GIS), Psychological Capital of the Elderly Scale (PCE), Family Functioning Index Questionnaire (APGAR), Sources of Meaning of Life Scale for Older Adults(SMSE), and Self-Management Behavior of Chronic Patients Scale (SMCS) were used. SPSS 26.0 was used for data entry, one-way analysis, Pearson correlation analysis, and multiple linear regression were used to analyze the data, and Amos 17.0 was used to construct the structural equation model. RESULTS: A total of 355 elderly patients with chronic diseases were included, and their self-management score was 74.75 ± 12.93, which was moderate. The results of the influencing factor analysis showed that the influencing factors of the self-management level of elderly chronic disease patients were age, years of illness, psychological capital, family functioning, and sources of meaning in life (p < 0.05). Path analysis revealed that sources of meaning in life were a partial mediator of the relationship between psychological capital and self-management, with an effect value of 0.166 (95% CI: 0.042,0.391), accounting for 37.6% of the total effect; life meaning was a partial mediator of family functioning and self-management level, with an effect value of 0.231 (95% CI: 0.040,0.452), accounting for 54.0% of the total effect. accounting for 54.0% of the total effect. CONCLUSION: The self-management of elderly patients with chronic diseases is intermediate. Healthcare professionals should actively implement holistic healthcare management measures from the family aspect to help patients understand the meaning of life and improve the level of patients' psychological capital to improve the self-management level of elderly patients with chronic diseases.