Tools used to measure the impact of comorbidities on surgical outcomes in children with complex chronic conditions: A scoping review.

AIM: To identify and describe assessment tools used to measure the impact of comorbidities on postoperative outcomes in children with complex chronic conditions (CCC). METHOD: This was a scoping review using five electronic databases. The search was conducted in March 2022 by a medical librarian. There were no date or language restrictions. Included studies were full-text articles published in peer-reviewed journals that described a tool used to measure the impact of comorbidities in children with CCC to assess postoperative outcomes. A standardized data charting tool was used. RESULTS: A total of 2157 articles were retrieved. Five studies reporting on six comorbidity measures met inclusion criteria. All were cohort studies and were secondary analyses of data from an administrative database (n = 4) or a patient registry (n = 1). Sample sizes ranged from 645 to 25 747 participants. One paper described the assessment of reliability. Only one form of validity - predictive validity - was assessed in three papers for five measures. INTERPRETATION: Findings from this scoping review revealed a paucity of comorbidity assessment tools validated for use with children with CCC; significant conceptual and measurement challenges exist in the current scientific literature.

Pneumonia after hip surgery in children with neurological complex chronic conditions.

AIM: In children with neurological complex chronic conditions (CCC) undergoing hip surgery we aimed to: estimate the rate of postoperative pneumonia, determine the effect of pneumonia on postoperative hospital resource use, and identify predictors of postoperative pneumonia. METHOD: A retrospective cohort study was conducted utilizing the Pediatric Health Information System database for 2609 children (1081 females, 1528 males) aged 4 years and older with a neurological CCC who underwent hip surgery (i.e. reconstruction surgery or salvage procedure) between 2016 and 2018 in 41 US children's hospitals. Multivariable, mixed-effects logistic regression was used to assess patient characteristics and risk of pneumonia. RESULTS: Mean age at hip surgery was 10 years 1 month (SD 4y 8mo). The postoperative pneumonia rate was 1.6% (n=42). Median length of stay (LOS) was longer for children with pneumonia and the 30-day all-cause unplanned readmission rate and costs were higher. Variability in rates of pneumonia ranged from 1.1% to 2.8% across hospitals. Significant predictors of postoperative pneumonia were osteotomy type (p=0.005) and number of chronic conditions (p≤0.001). INTERPRETATION: Postoperative pneumonia after hip surgery in children with a neurological CCC is associated with longer LOS, readmissions, and higher costs. Children undergoing pelvic osteotomies and who have multimorbidity need additional clinical support to prevent postoperative pneumonia and decrease resource utilization. WHAT THIS PAPER ADDS: Pneumonia is a major postoperative complication in children with neurological complex chronic conditions (CCC). Forty-two (1.6%) children with neurological CCC developed pneumonia after hip surgery. Length of stay, readmissions, and costs were significantly higher in the group with pneumonia. Variability in pneumonia rates existed across hospitals. Predictors of developing pneumonia include osteotomy type and number of CCC.

Parental caregivers' perception of their transition from hospital to home in children with cerebral palsy who have undergone orthopedic surgery.

PURPOSE: Evaluate parental perception of the quality of discharge teaching, readiness for discharge, and the impact of these on post discharge coping difficulty and resource utilization in children with cerebral palsy (CP) following surgery. DESIGN AND METHODS: Prospective cohort study conducted from September 2017-March 2021 at a pediatric academic medical center. Demographics were collected pre-operatively. Parents completed the Readiness for Hospital Discharge Scale (RHDS) and Quality of Discharge Teaching Scale (QDTS) within four hours of discharge. Four weeks post-discharge, parents completed the Post-discharge Coping Difficulty Scale (PDCDS). Utilization of healthcare resources were extracted from the electronic health record for 90 days post-operatively. Associations among demographics, RHDS, QDTS, PDCDS and resource utilization were assessed using general linear models; PDCDS's open-ended questions were analyzed using directed content analysis. RESULTS: 114 parental caregivers participated. Post discharge coping was significantly associated with additional resource utilization: length of stay (p = 0.046), readmissions (p = 0.001), emergency department visits (p = 0.001), clinic calls (p = 0.001) and unplanned clinic visits (p = 0.006). PDCDS was negatively correlated with the QDTS Quality of Teaching Delivered subscale (r = -0.32; p = 0.004) and three of five RHDS subscales: 1) Child's Personal Status (r = -0.24; p = 0.02); 2) Knowledge (r = -0.30; p = 0.005); and 3) Coping Ability (r = -0.39; p < 0.001). Four themes explicated parental coping difficulties. CONCLUSION: Parents experiencing coping difficulties were more likely to have difficulty managing their child's care needs at home and required additional health care resources. PRACTICE IMPLICATIONS: Recognizing that parents' readiness for discharge may not reflect their coping abilities post-discharge requiring nurses to coordinate pre- and post-discharge education and support services.

Health-related quality of life and caregiver burden after hip reconstruction and spinal fusion in children with spastic cerebral palsy.

AIM: To evaluate the effect of hip reconstruction or spinal fusion on health-related quality of life (HRQoL) in non-ambulatory children with spastic cerebral palsy (CP) and caregiver burden. METHOD: This was a prospective, longitudinal study of changes in HRQoL and caregiver burden over the 5 years after surgical correction of hip instability or scoliosis in children with bilateral spastic CP classified in Gross Motor Function Classification levels IV or V. Serial parent proxy measures of HRQoL and caregiver burden were obtained before and 6 weeks, and 3, 6, 9, 12, 24, and 60 months after surgery using the Caregiver Priorities and Child Health Index of Life with Disabilities and the Assessment of Caregiver Experience with Neuromuscular Disease. Scores 5 years or more after surgery were compared to pre-surgery scores using paired Student's t-tests. Serial outcome trajectories were estimated by linear mixed modeling. RESULTS: Of 69 participants (40 males, 29 females; mean age 11y 6mo, SD 4y 1mo, range 3y 10mo-20y 7mo), 43 had hip reconstruction and 26 had spinal fusion. Clinically significant improvements in HRQoL were detected (average increase 7.6 points) 5 years or more postoperatively, with hip reconstruction providing greater benefit. Domains improved by surgery included positioning, transferring/mobility, comfort/emotions, and health. Caregiver burden did not change as these children remain maximally dependent. INTERPRETATION: Surgical treatment of hip and spine deformity improves HRQoL, especially for painful hip instability, but does not change caregiver burden.

Barriers to Discharge After Hip Reconstruction Surgery in Non-ambulatory Children With Neurological Complex Chronic Conditions.

BACKGROUND: Hip reconstruction surgery in patients with neurological complex chronic conditions (CCC) is associated with prolonged hospitalization and extensive resource utilization. This population is vulnerable to cognitive, developmental, and medical comorbidities which can increase length of stay (LOS). The aims of this study were to characterize barriers to discharge for a cohort of children with neurological CCC undergoing hip reconstruction surgery and to identify patient risk factors for prolonged hospitalization and delayed discharge. METHODS: Retrospective chart review of nonambulatory patients with neurological CCC undergoing hip reconstruction surgery between 2007-2016 was conducted. Hospitalization ≥1 day past medical clearance was characterized as delayed discharge. Barriers were defined as unresolved issues at the time of medical clearance and categorized as pertaining to the caregiver and patient education, durable medical equipment, postdischarge transportation/placement, and patient care needs. RESULTS: The cohort of 116 patients was 53% male, 16% non-English speaking, and 49% Gross Motor Function Classification System (GMFCS) V with the mean age at surgery of 9.1±3.64 years. Median time from admission to medical clearance was 5 days with median LOS of 6 days. Approximately three-quarters of patients experienced delayed discharge (73%) with barriers identified for 74% of delays. Most prevalent barriers involved education (30%) and durable medical equipment (29%). Postdischarge transportation and placement accounted for 26% of barriers and 3.5 times longer delays ( P <0.001). Factors associated with delayed discharge included increased medical comorbidities ( P <0.05) and GMFCS V ( P <0.001). Longer LOS and medical clearance times were found for female ( P =0.005), older age ( P <0.001), bilateral surgery ( P =0.009), GMFCS V ( P =0.003), and non-English-speaking patients ( P <0.001). CONCLUSIONS: Patients with neurological CCC frequently encounter postoperative barriers contributing to increased LOS and delayed discharge. Patients that may be at higher risk for prolonged hospitalization and greater resource utilization include those who are female sex, adolescent, GMFCS V, non-English speaking, have additional comorbidities, and are undergoing bilateral surgery. Standardized preoperative assessment of educational needs, perioperative equipment requirements, and posthospital transportation may decrease the LOS, reduce caregiver and patient burden/distress, cost, and ultimately reduce variation in care delivery. LEVEL OF EVIDENCE: Level III, Retrospective Case Series.

Hospital resource use after hip reconstruction surgery in children with neurological complex chronic conditions.

AIM: To assess how co-occurring conditions influence recovery after hip reconstruction surgery in children with neurological complex chronic conditions (CCCs). METHOD: This was a retrospective analysis of 4058 children age 4 years or older with neurological CCCs who underwent hip reconstructive surgery between 1st January 2015 and 31st December 2018 in 49 children's hospitals. The presence of co-occurring chronic conditions was assessed using the Agency for Healthcare Research Chronic Condition Indicator system. Multivariable, hierarchical regression was used to assess the relationship between co-existing conditions and postoperative hospital length of stay (LOS), cost, and 30-day readmission rate. RESULTS: The most common co-occurring conditions were digestive (60.1%) and respiratory (37.9%). As the number of co-existing conditions increased from one to four or more, median LOS increased 67% (3d [interquartile range {IQR} 2-4d] to 5d [IQR 3-8d]); median hospital cost increased 41% ($20 248 [IQR $14 921-$27 842] to $28 692 [IQR $19 236-$45 887]); and readmission rates increased 250% (5.5-13.9%), p<0.001 for all. Of all specific co-existing chronic conditions, malnutrition was associated with the greatest increase in postoperative hospital resource use. INTERPRETATION: Co-occurring conditions, and malnutrition in particular, are a significant risk factor for prolonged, in-hospital recovery after hip reconstruction surgery in children with a neurological CCC. Further investigation is necessary to assess how improved preoperative optimization of multiple co-occurring conditions may improve postoperative outcomes and resource utilization. WHAT THIS PAPER ADDS: Children with neurological complex chronic conditions (CCCs) often develop hip disorders which require hip reconstruction surgery. Co-occurring conditions are common in children with neuromuscular CCCs. Having four or more chronic conditions was associated with a longer length of stay, increased costs, and higher odds of readmission. Malnutrition was a significant risk factor for prolonged hospitalization after hip reconstruction surgery.

Building and Sustaining a Culture of Clinical Inquiry in a Pediatric Quaternary Hospital.

The Nurse Executive Committee for Research and Inquiry (NECRI) was established to align clinical inquiry with nursing clinical operations to advance nursing science and improve patient care and outcomes for patients and their families. The authors describe the development, structure, and function of NECRI, outcomes to date, and infrastructure necessary to support a sustainable model.

Identifying Bullied Youth: Re-engineering the Child-Adolescent Bullying Scale into a Brief Screen.

While youth bullying is a critical public health problem, standardized exposure screening is not routinely practiced. The Child-Adolescent Bullying Scale, (CABS), a psychometrically robust 22-item tool, was designed and evaluated for this purpose using classical test theory. The goals of the present study were to examine and optimize the measurement properties of the CABS using a Rasch psychometric analysis to develop a brief screening tool appropriate for clinical use. A methodologic design and the Rasch rating scale model were employed. Three hundred and fifty-two youths from two clinical sites participated. Rasch-based analyses included evaluation of response category functioning, measurement precision, dimensionality, targeting, differential item functioning and guidance in item reduction. After iterative revisions, the resulting screening instrument consists of 9 items. Cut-scores and interpretive guidance are provided to aid clinical identification of bullying-related risk. Findings suggest the CABS-9 holds promise as a useful screening tool for identifying bullying exposure.

Item Generation and Content Validity of the Child-Adolescent Bullying Scale.

BACKGROUND: Healthcare providers do not uniformly screen young patients for exposure to bullying, and no screening instruments have been developed for widespread use in clinical settings. OBJECTIVES: The objectives of this study were to (a) generate scale items by identifying and eliciting concepts relevant to youths with potential exposure to bullying as well as to professionals who work with bullied youths and (b) assess the content validity of the new Child-Adolescent Bullying Scale (CABS) instrument. METHODS: A mixed-methods design was used to develop an initial pool of 52 items. The study was conducted in four phases: (I) comprehensive review of the existing literature; (II) concept elicitation through the conduct of focus groups with school-age youths and professionals who work with bullied youths; (III) concept selection and item construction; and (IV) content validation assessment of relevance, clarity, and dimension of each item by a panel of 30 international bullying and measurement experts through completion of an online survey. RESULTS: An initial pool of 52 potential items was developed during Phases I-III of the study. During Phase IV, item- and scale-level content validity indices were calculated and were used to refine the item pool. These strategies resulted in a new, 22-item tool, with scale-level content validity indices of .954 for clarity and .920 for representativeness. DISCUSSION: Evaluation of the CABS tool with a sample of youths drawn from healthcare settings will be necessary to assess the performance of the CABS items, further evaluate its psychometric properties, and further refine the tool.

The Child Adolescent Bullying Scale (CABS): Psychometric evaluation of a new measure.

While youth bullying is a significant public health problem, healthcare providers have been limited in their ability to identify bullied youths due to the lack of a reliable, and valid instrument appropriate for use in clinical settings. We conducted a multisite study to evaluate the psychometric properties of a new 22-item instrument for assessing youths' experiences of being bullied, the Child Adolescent Bullying Scale (CABS). The 20 items summed to produce the measure's score were evaluated here. Diagnostic performance was assessed through evaluation of sensitivity, specificity, predictive values, and area under receiver operating characteristic (AUROC) curve. A sample of 352 youths from diverse racial, ethnic, and geographic backgrounds (188 female, 159 male, 5 transgender, sample mean age 13.5 years) were recruited from two clinical sites. Participants completed the CABS and existing youth bullying measures. Analyses grounded in classical test theory, including assessments of reliability and validity, item analyses, and principal components analysis, were conducted. The diagnostic performance and test characteristics of the CABS were also evaluated. The CABS is comprised of one component, accounting for 67% of observed variance. Analyses established evidence of internal consistency reliability (Cronbach's α = 0.97), construct and convergent validity. Sensitivity was 84%, specificity was 65%, and the AUROC curve was 0.74 (95% CI: 0.69-0.80). Findings suggest that the CABS holds promise as a reliable, valid tool for healthcare provider use in screening for bullying exposure in the clinical setting.

Reducing the Incidence of Cast-related Skin Complications in Children Treated With Cast Immobilization.

BACKGROUND: Cast immobilization remains the mainstay of pediatric orthopaedic care, yet little is known about the incidence of cast-related skin complications in children treated with cast immobilization. The purposes of this quality improvement project were to: (1) establish a baseline rate of cast-related skin complications in children treated with cast immobilization, (2) identify trends in children who experienced cast-related skin complications, (3) design an intervention aimed at decreasing the rate of cast-related skin complications, and (4) determine the effectiveness of the intervention. METHODS: A prospective interrupted time-series design was used to determine the incidence of cast-related skin complications overtime and compare the rates of skin complications before and after an intervention designed to decrease the incidence of cast-related heel complications. All consecutive patients who were treated with cast immobilization from September 2012 to September 2014 were included. A cast-related skin complications data collection tool was used to capture all cast-related skin complications. A high rate of heel events was noted in our preliminary analysis and an intervention was designed to decrease the rate of cast-related skin complications, including the addition of padding during casting and respective provider education. RESULTS: The estimated cast-related skin events rate for all patients was 8.9 per 1000 casts applied. The rate for the total preintervention sample was 13.6 per 1000 casts which decreased to 6.6 in the postintervention sample. When examining the heel-only group, the rate was 17.1 per 1000 lower extremity casts applied in the preintervention group and 6.8 in the postintervention group. CONCLUSIONS: Incorporating padding to the heel of lower extremity cast was an effective intervention in decreasing the incidence of cast-related skin complications in patients treated with cast immobilization. LEVEL OF EVIDENCE: Level II.

Impact of Non-medical Out-of-pocket Expenses on Families of Children With Cerebral Palsy Following Orthopaedic Surgery.

PURPOSE: Limited research has been conducted on the non-medical out-of-pocket expenses (NOOPEs) incurred by families of children with chronic health conditions. The study objectives were to: 1) calculate the estimated NOOPEs incurred by families during hospitalization of their child, 2) identify predictors of high NOOPEs, and 3) assess the impact of the child's chronic health condition on the family's finances. DESIGN AND METHODS: Prospective observational study. Parents were included if their child was 3-20years old, had severe, non-ambulatory cerebral palsy (CP), and scheduled for hip or spine surgery. Parents reported all NOOPEs incurred during their child's hospitalization using the Family Expense Diary. Families completed the subscales of the Impact on Family Scale and the Assessment of Caregivers Experience with Neuromuscular Disease. Descriptive and univariate and multiple hierarchical regression models were used in the analysis. RESULTS: Fifty two parents participated. The total NOOPEs ranged from $193.00 to $7192.71 (M=$2001.92) per hospitalization representing an average of 4% of the family's annual earned income. Caregiver age (F=8.393, p<0.001), income (F=7.535, p<0.001), and distance traveled to the hospital (F=4.497, p=0.039) were significant predictors of high NOOPEs. The subscale scores indicated that a child's chronic health condition had a significant impact on family finances. CONCLUSIONS AND PRACTICE IMPLICATIONS: Hospitalization is associated with numerous NOOPEs that create additional financial demands for families caring for a child with severe CP. NOOPEs should be addressed when preparing families for their children's planned hospital admissions, especially those families of CSHCN who experience significant financial impacts secondary to their children's care.

Technology-enhanced focus groups as a component of instrument development.

Background Bullying is a critical public health problem and a screening tool for use in healthcare is needed. Focus groups are a common tool for generating qualitative data when developing an instrument and evidence suggests that technology-enhanced focus groups can be effective in simultaneously engaging participants from diverse settings. Aim To examine the use of technology-enhanced focus groups in generating an item pool to develop a youth-bullying screening tool. Discussion The authors explore methodological and ethical issues related to conducting technology-enhanced focus groups, drawing on their experience in developing a youth-bullying measure. They conducted qualitative focus groups with professionals from the front lines of bullying response and intervention. They describe the experience of conducting technology-enhanced focus group sessions, focusing on the methodological and ethical issues that researchers engaging in similar work may encounter. Challenges associated with this methodology include establishing rapport among participants, privacy concerns and limited non-verbal communication. Conclusion The use of technology-enhanced focus groups can be valuable in obtaining rich data from a wide variety of disciplines and contexts. Organising these focus groups was inexpensive and preferred by the study's participants. Implications for practice Researchers should consider using technology-enhanced focus groups to generate data to develop health-related measurement tools.

Differences in health-related quality of life and caregiver burden after hip and spine surgery in non-ambulatory children with severe cerebral palsy.

AIM: The aim of this study was to evaluate changes in caregivers' perceptions of health-related quality of life (HRQOL) and caregiver impact in children with severe, non-ambulatory cerebral palsy after orthopedic surgery to correct hip or spine deformities. METHOD: A prospective longitudinal cohort study (n=44) design was used to measure changes before and after surgery. Caregivers completed the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) and the Assessment of Caregiver Experience with Neuromuscular Disease (ACEND). Data collection was between February 2011 and February 2014. Caregivers were included if their child was 3 to 25 years old, had cerebral palsy in Gross Motor Function Classification System levels IV and V, and was scheduled for orthopedic surgery. Analysis of variance with repeated measures was used to assess changes before and at four time points after surgery. RESULTS: Forty-four caregivers participated. Caregivers' perceptions of their child's HRQOL demonstrated an improvement from baseline to 12 months (p<0.001). Patients who had spine surgery demonstrated a steady improvement over time, whereas patients who had hip surgery had a decrease at 6 weeks followed by steady improvement. Improvements were noted in five of six of the CPCHILD domains, with no changes in the quality of life domain. No changes were noted in any of the ACEND domains. INTERPRETATION: Caregivers report an improvement in a variety of domains of HRQOL 1 year after orthopedic surgery.

Enhancing Care Coordination Through Patient- and Family-Initiated Telephone Encounters: A Quality Improvement Project.

Telehealth activities are often conducted by ambulatory nurses to assist with care coordination; these activities are especially important for children with complex, chronic conditions. This quality-improvement project examines specific components of nursing care delivered to children on the neurology and gastroenterology services through patient-initiated telephone encounters. Metrics and nurse-sensitive indicators explored include the type of services requested, the nurses' ability to resolve patients' concerns while eliminating otherwise unnecessary care, and associated costs with providing this care. The usefulness of a standardized instrument, the care coordination management tool, used in this project is discussed.

Youth bullying: a review of the science and call to action.

Recognized as a critical public health problem, youth bullying is reportedly experienced by approximately 20% of today's youths. In the last decade, attention to bullying has increased and the scientific knowledge base relevant for practitioners who treat youths, research their issues, and create policy has expanded. The purpose of this review is to highlight key developments related to the health effects of bullying, interventions aimed at curbing bullying behaviors, the measurement of bullying, and nursing's disciplinary response to this phenomenon. A call to action for nurses involved in caring for youths across settings and roles is offered and strategic actions for nursing professionals are provided.

Parental Caregiver Expectations and Satisfaction Following Hip Reconstruction and Spinal Fusion in Children With Cerebral Palsy.

Children with severe (Gross Motor Function Classification System [GMFCS] IV-V) cerebral palsy (CP) exhibit profound physical and developmental impairments and require assistance for all activities of daily living. No curative treatments exist although surgical procedures to correct underlying hip and spine deformities can improve their quality of life. Despite the efficacy of these surgeries, little is known regarding parental caregivers' expectations specific to surgical outcomes and their satisfaction with surgical outcomes. The purpose was to explore parental caregiver expectations and satisfaction with hip and spine surgeries that their children with GMFCS IV-V CP underwent. Variations among preoperative expectations, changes in expectations over time, and the relationship of expectations on caregiver satisfaction were examined. A qualitative descriptive approach with conventional content analysis was utilized. Three preoperative caregiver expectation themes were identified: increasing functionality, increasing comfort, and maintaining health and averting crisis. These themes were still present at 5-year follow-up; however, more caregivers refocused their expectations from improving function to providing palliation. A clear relationship between expectations and caregiver satisfaction, however, was not identified. A deeper understanding surrounding caregiver expectation and satisfaction following surgical procedures is needed.

Increasing meaning in measurement: a Rasch analysis of the Child-Adolescent Teasing Scale.

BACKGROUND: In today's increasingly violent society, many childhood incidents that begin as simple teasing deteriorate into persistent bullying. The Child-Adolescent Teasing Scale (CATS) was developed to measure self-perceived teasing in youths aged 11-15 years. It was validated initially using the principles of classical test theory and deemed to be a reliable and valid measure of teasing; it has been responsive to change in intervention studies. OBJECTIVE: The aim of this study was to evaluate further the psychometric properties of the CATS by evaluating the degree to which the CATS items are congruent with the primary assumptions of the Rasch measurement model. METHODS: A methodological study design using a Rasch Rating Scale Model was utilized to examine the psychometric properties of the 32-item CATS. The sample of the CATS consisted of 666 youths aged 11-15 years from diverse racial and socioeconomic backgrounds and geographic regions. Unidimensionality, hierarchical ordering, and stretching of the variable's responses along a continuum were examined. RESULTS: The current CATS subscales do not fit the criteria for the Rasch model. The subscales are not unidimensional or hierarchical and do not exist on upon a continuum upon which items can be ordered and children can be placed. DISCUSSION: The divergent results between the classical test theory and Rasch analyses, although not completely surprising, underscore the need for continued refinement of an instrument's psychometric properties to ensure it is measuring the concept of interest in the way it was intended.