Assessment of treatment burden and complexity in cystic fibrosis: A quality improvement project.

BACKGROUND: Treatment regimens for cystic fibrosis (CF) continue to evolve and grow in complexity. Treatment regimen burden, and associated sequelae, are incompletely understood. OBJECTIVE: Quality improvement (QI) methods were used to investigate treatment burden of CF care, family and care team partnerships, and potential interventions to reduce burden. METHODS: Patients 6-24 years with CF and caregivers of patients 6-13 years were surveyed. Portions of validated tools and existing surveys measured burden and family-care team partnership. An automated report calculated treatment complexity. Plan-do-study-act cycles tested survey administration during CF visits and run charts tracked progress. Interventions to reduce burden were tracked, and bidirectional assessments explored partnerships among patients, families and clinicians. RESULTS: Over 6 months, 110 patients and 62 caregivers completed assessments. Caregivers reported lower burden/higher quality of life (74.0, range 22.2-100) than patients (66.5, range 16.7-100). The mean treatment complexity score was 17.2 (range 6-34). Treatment complexity and burden increased with patient age (p < .05 and p < .01 respectively). Lower lung function correlated with higher patient-reported burden (p < .01) and higher treatment complexity (p < .0001). As burden increased, providers more often performed select interventions (discussed combining treatments, simplified regimens, or involved other team members (p < .05 for each)). Families reported high partnership (mean scores 4.7-4.8, 5 = high), and providers reported high utilization of partnership tools (tool used in 77% of encounters). CONCLUSION: We assessed, quantified, and responded to treatment burden and complexity in real-time during outpatient CF visits. Systematic and individualized assessments of treatment complexity and burden may enhance treatment adherence while preserving quality of life.

Assessing and responding to stress related to pulmonary function testing in cystic fibrosis through quality improvement.

BACKGROUND: Pulmonary function tests (PFTs) are performed routinely to evaluate lung function in patients with cystic fibrosis (CF). Staff at the Cincinnati Children's Hospital Medical Center CF Center observed stress in patients before PFTs. An interdisciplinary quality improvement (QI) team was assembled to address this clinical issue. METHODS: The Plan-Do-Study-Act method of QI was used to investigate feasibility of assessing stress and offering brief interventions to reduce stress before PFTs. Interventions included listening to music, covering the PFT screen, or doing breathing meditation before PFTs. Patients rated stress levels on a 1 to 5 Likert scale before and after testing. RESULTS: Of 75 patient encounters, interventions were trialed in 20. Fifteen patients who tried an intervention reported wanting to use the intervention again (five encounters had missing data); patients reported that the intervention benefited performance on PFTs in eight encounters (40%). The average pre-PFT stress rating for encounters that trialed an intervention was 2.1 and post-PFT rating was 2.0. Average stress pre-PFT and post-PFT ratings were 1.7 and 1.6 respectively, for encounters that did not trial an intervention. Median length of PFT encounter was 15 minutes regardless of whether intervention was trialed. CONCLUSION: Some patients with CF utilized interventions, while many opted out. This QI effort identified feasible outpatient clinic interventions that did not negatively impact clinic flow. Finding ways to reduce stress associated with PFTs could have a meaningful impact on patient performance and emotional well-being for a subset of patients.

Assessing psychosocial risk in pediatric cystic fibrosis.

BACKGROUND: Psychosocial risk factors are known to impact quality of life, treatment adherence, and health outcomes. No standardized comprehensive psychosocial risk screener is routinely utilized in cystic fibrosis (CF) care. The objectives of the study were to describe the range and severity of psychosocial risk within this CF population, investigate the reliability of a comprehensive psychosocial screener in pediatric CF clinical care, and explore relationships between psychosocial risk and key factors affecting health outcomes. It was hypothesized that the PAT-CF total and subscale α coefficients would be similar to those found in other pediatric medical populations. METHOD: Parents of 154 children with CF completed a CF-specific version of the Psychosocial Assessment Tool_All-lit (PAT-CF), an empirically-based psychosocial risk assessment, during routine CF clinical care. RESULTS: The internal consistency of the PAT-CF Total score was 0.71. Total score and subscale reliabilities reflect findings in other pediatric populations. Total risk scores fell in the following categories: 7% (Clinical-highest risk), 41% (Targeted), and 52% (Universal-lowest risk), respectively. Increased psychosocial risk was associated with Medicaid status and lower parent education, whereas having private insurance was associated with decreased psychosocial risk. CONCLUSIONS: The PAT-CF can feasibly be used as an empirically-based comprehensive psychosocial risk tool in routine CF care and is acceptable by parents. In addition to providing universal anticipatory guidance regarding child and family wellness, early identification of risk factors allows care teams to proactively provide targeted support and intervention for specific psychosocial risk factors to promote improved quality of life and ability to sustain daily care.

The impact of transforming healthcare delivery on cystic fibrosis outcomes: a decade of quality improvement at Cincinnati Children's Hospital.

BACKGROUND: In 2001, Cincinnati Children's Hospital embarked on a journey to improve healthcare delivery to patients with cystic fibrosis (CF). Data from the Cystic Fibrosis Foundation National Patient Registry revealed our below-average clinical outcomes, prompting us to initiate improvement interventions. OBJECTIVE: To improve clinical outcomes for patients with CF through a comprehensive quality-improvement approach directed at increasing patient centredness and improving healthcare delivery. INTERVENTIONS: In 2001, we shared our below-average outcomes with patients, families and care providers. We instituted a quality-improvement steering committee with parental and hospital leadership, and our data-management support was restructured to provide real-time clinical data to monitor our progress. In 2002, our weekly chart conference changed to a prospective planning session and individualised daily schedules were created for inpatients. In 2003, an influenza vaccination campaign was initiated and our infection-control practices were redesigned. In 2005, best-practice guidelines were developed for airway-clearance therapy. In 2007, evidence-based clinical algorithms were designed and implemented and key care-team members were added. MEASUREMENTS: Primary outcome measures were median forced expiratory volume in 1 s per cent predicted (age range 6-17 years) and median body mass index percentile (age range 2-20 years). RESULTS: From 2000 to 2010, median forced expiratory volume in 1 s increased from 81.7% to 100.1% predicted and median body mass index increased from the 35th to the 55th centile. DISCUSSION: By focusing on specific outcomes, empowering families and patients, effectively using data, and standardising care processes, we transformed the culture and delivery of care for our patients with CF and learned valuable lessons potentially translatable to other chronic-care providers.

Improving evidence-based care in cystic fibrosis through quality improvement.

OBJECTIVE: To increase clinician adherence to prescribing guidelines for pulmonary medications in children with cystic fibrosis (CF). DESIGN: Quality improvement project with multiple time series design. SETTING: The CF center at a tertiary care pediatric hospital in the United States. PATIENTS: Children with CF who were eligible to receive oral azithromycin, nebulized dornase alfa, or inhaled tobramycin sulfate based on prescribing guidelines for CF lung disease. INTERVENTION: Evidence-based prescribing guidelines were designed by a local committee to reflect consensus recommendations from the CF Foundation. Clinicians and families were educated about guidelines. Adherence to prescribing guidelines was tracked using a local CF database and record reviews. Weekly meetings were used to highlight adherence failures and promote clinician accountability. MAIN OUTCOME MEASURE: The rate of clinician adherence to prescribing guidelines. RESULTS: One hundred seventy patients with CF were included. At the start of the project, the rate of clinician adherence to prescribing guidelines was 62%. After 3 months of the project, the rate of clinician adherence to prescribing guidelines was 87% (odds ratio = 4.6; 95% confidence interval, 3.0-7.0). The improvements in adherence to prescribing guidelines were sustained for 21 months of follow-up. CONCLUSIONS: Educating clinicians about prescribing guidelines, sharing guidelines with families, and monitoring clinician adherence improve prescribing adherence to evidence-based recommendations.

Using quality improvement science to implement a multidisciplinary behavioral intervention targeting pediatric inpatient airway clearance.

OBJECTIVE: The objective of this study was to use quality improvement science methodology to develop a multidisciplinary intervention improving occurrence of best-practice airway clearance therapy (ACT) in inpatient adolescents with cystic fibrosis during routine clinical care. METHODS: The model for improvement was used to develop and implement interventions. Primary outcomes were quality of ACT (% ACT meeting criteria for best practice) and quantity of ACT (% of hospital days patients received ACT four times/day). Annotated control charts were used to document the impact of the interventions. RESULTS: Quality of ACT significantly improved from 21% best practice ACT at baseline to 73%. Quantity of ACT significantly improved from 41% days with ACT four times/day at baseline to 64%. CONCLUSIONS: A multidisciplinary, evidence-based intervention was effective for improving occurrence of best-practice ACT. Pediatric psychology can make valuable contributions to improving the quality of care provided in the medical setting.

Obliterative bronchiolitis in a 13-year-old pre-transplant cystic fibrosis patient.

Cystic fibrosis (CF)-related lung disease is characterized by a broad spectrum of pathologic changes. Most of these changes relate to progressive bronchiectasis and airway destruction due to recurrent infections. Other airway pathologies include but are not limited to nasal polyposis, bronchial hyperactivity, pneumothorax and allergic bronchopulmonary aspergillosis (ABPA). Constrictive obliterative bronchiolitis (COB) in CF is usually seen in post-transplant settings including lung and heart-lung transplants. We report a 13-year-old boy with CF and intractable deterioration in lung function that was ultimately diagnosed as COB.

Improving influenza immunisation for high-risk children and adolescents.

OBJECTIVE: To improve influenza vaccination rates for high-risk children and adolescents. METHODS: During the 2004-5 influenza season, 5 regional cystic fibrosis (CF) centres, 6 hospital clinics that participated in a similar initiative the previous year, 4 new hospital clinics, and 39 community-based paediatric practices implemented a multicomponent change package consisting of nine improvement strategies designed to increase immunisation of high-risk patients. Each site was encouraged to adopt and customize the improvement strategies to meet their specific culture and needs. The main outcome measure was the proportion of the target population immunised. Surveys sent to the community practices were summarised. RESULTS: The intervention targeted a total of 18 866 high-risk children and 9374 (49.7%) received the influenza vaccination. Community-based practices that actively participated in the collaborative reported using significantly more intervention strategies (mean (SD) 7.4 (2.3) vs 4.6 (1.5), respectively, p = 0.001) and achieved higher immunisation rates (59.3% (13.6%) vs 43.7% (20.5%), respectively, p = 0.01) than non-participating practices. The most frequently implemented change concepts were posters in the office, walk-in clinics or same-day appointments and reminder phone calls. The interventions deemed most helpful were weekend or evening "flu shot only" sessions, walk-in or same-day appointments, reminder calls and special mailings to families. CONCLUSIONS: Implementation of the change package, based on evidence and diffusion of innovation theory, resulted in higher immunisation rates than typically reported in the medical literature, especially for the community-based primary care practices.

Individualized daily schedules for hospitalized adolescents with cystic fibrosis.

INTRODUCTION: This article describes the effects of an individualized patient schedule on satisfaction and clinical outcomes for patients with cystic fibrosis admitted to an adolescent unit. METHOD: Data on airway clearance treatments, physical therapy attendance, and school attendance were collected for patients who used the individualized schedule and for historic controls. Patients who were admitted following implementation of the schedule were asked to complete a brief survey about their inpatient care shortly before or after hospital discharge. RESULTS: Patients who used the schedule were more likely to report that their care was often or always delivered exactly as they expected and to believe that they were involved in care decisions as much as they wanted to be. Eighty-seven percent believed that using the individualized schedule made their stay a little or much better compared to past hospitalizations. There was no change in physical therapy, airway clearance, and school attendance. DISCUSSION: Engaging hospitalized adolescents with cystic fibrosis in the design of their individualized daily schedule is a win-win proposition, resulting in improved satisfaction while maintaining clinical outcomes.