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Improving transition from paediatric to adult cystic fibrosis care: programme implementation and evaluation.

ABSTRACT: BACKGROUND:The paradigm of cystic fibrosis (CF) care has changed as effective therapies extend the lives of patients well into adulthood. Preparing for and maintaining high quality CF care into the adult healthcare setting is critical for prolonged survival. Unfortunately, this transfer process from the paediatric to the adult CF centre is met with a variety of challenges. OBJECTIVE AND METHODS:The objective of this quality improvement (QI) project was to develop, implement and evaluate a theory-based programme for transition from paediatric to adult CF care. In a multi-phase process, the paediatric and adult programmes developed a transition curriculum, addressed care standards and standardised patient transfer protocols. We evaluated the impact of this process through staff surveys, review of field notes from QI meetings, tracking transfers and responses of patients to the Transition Readiness Assessment Questionnaire (TRAQ) at the start of the programme and 18 months after initiation. RESULTS:The collaboration between the paediatric and adult teams continued through quarterly meetings over the past 4 years. This has provided a forum that sustained our transition programme, harmonised care across CF centres and addressed other needs of our CF centre. Discussion of transition with families in the paediatric centre increased twofold (35% to 73% p<0.001), and resulted in a trend towards improved patient TRAQ self-advocacy scores and decreased in-hospital transfer. CONCLUSIONS:We successfully created a curriculum and process for transition from paediatric to adult CF care at our centres. This collaboration shapes the communication between our paediatric and adult CF care teams and enables ongoing feedback among patients, families and providers. The impact of our transition programme on long-term patient morbidity will require future evaluation.

SUBMITTER: Okumura MJ

PROVIDER: S-EPMC4449274 | biostudies-literature | 2014 Apr

REPOSITORIES: biostudies-literature

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Improving transition from paediatric to adult cystic fibrosis care: programme implementation and evaluation.

Okumura Megumi J MJ Ong Thida T Dawson Diana D Nielson Dennis D Lewis Nancy N Richards Martha M Brindis Claire D CD Kleinhenz Mary Ellen ME

BMJ quality & safety 20140110

<h4>Background</h4>The paradigm of cystic fibrosis (CF) care has changed as effective therapies extend the lives of patients well into adulthood. Preparing for and maintaining high quality CF care into the adult healthcare setting is critical for prolonged survival. Unfortunately, this transfer process from the paediatric to the adult CF centre is met with a variety of challenges.<h4>Objective and methods</h4>The objective of this quality improvement (QI) project was to develop, implement and ev ...[more]

PMID: 24415776

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Project description:BackgroundPeople with cystic fibrosis are required to adhere to a burdensome daily treatment regimen. Comprehensive adherence protocols can support more consistent use of adherence interventions and improve treatment adherence rates. This study aimed to explore the feasibility, acceptability, and appropriateness of implementing an adherence protocol into the outpatient cystic fibrosis clinic of a tertiary, paediatric hospital.MethodsThis implementation study employed a pre-post observation design, using multiple methods. Focus groups and semi-structured interviews were conducted pre-implementation to understand clinician and consumer perspectives on adherence care. A multicomponent adherence protocol (including multidisciplinary written treatment plans, digital mental health screening and customised communication tools) was then implemented as standard care for a three-month implementation phase. Quantitative data was collected throughout using purpose-designed audit tools and surveys. The Replicating Effective Practice (REP) Framework guided the implementation process. Analysis was informed by The Consolidated Framework for Implementation Research (CFIR) to identify factors that support or challenge the integration of adherence protocols into standard care.ResultsThirteen clinicians, eight parents and two adolescents participated in focus groups or interviews that informed development of the tailored multicomponent adherence protocol for implementation. Medical chart audits demonstrated that the protocol was used with 44-57% of eligible consumers three months after introduction. Eighteen clinicians and five consumers participated in post-implementation phase questionnaires. The protocol was considered acceptable and appropriate to clinicians and consumers. Changes in clinicians' practice behaviour were short-lived peaks in response to targeted intervention strategies throughout the implementation phase, such as audit and feedback.ConclusionsAn adherence protocol is not an "off the shelf" solution to the adherence challenge in a hospital outpatient setting. Despite the tailored adherence protocol being considered appropriate and acceptable to clinicians and consumers, low fidelity indicates limited feasibility in the outpatient clinic setting, where multi-disciplinary members are all considered responsible for adherence care interventions. Key implementation factors and strategies to consider prior to introducing an adherence protocol are described.Trial registrationAustralian New Zealand Clinical Trials Registry ACTRN12619001730190 (Retrospectively registered).

Project description:BackgroundOptimal sedation and analgesia is a challenge in paediatric intensive care units (PICU) because of difficulties in scoring systems and specific metabolism inducing tolerance and withdrawal. Excessive sedation is associated with prolonged mechanical ventilation and hospitalisation. Adult and paediatric data suggest that goal-directed sedation algorithms reduce the duration of mechanical ventilation. We implemented a nurse-driven sedation protocol in a PICU and evaluated its impact.MethodsWe conducted a before and after protocol implementation study in a population of children aged 0-18 years who required mechanical ventilation for at least 24 h between January 2013 and March 2015. After the protocol implementation in January 2014, nurses managed analgesia and sedation following an algorithm that included the COMFORT behaviour scale (COMFORT-B). Duration of mechanical ventilation was the primary outcome; secondary outcomes were total doses and duration of medications, PICU length of stay, incidence of ventilator-associated pneumonia, and occurrence of withdrawal symptoms. Pre-post analysis followed with segmented regression analysis of interrupted time series was used to assess the effect of protocol.ResultsA total of 200 children were analysed, including 107 before implementation and 93 children after implementation of the protocol. After implementation of the protocol, the total number of COMFORT-B scores per day of mechanical ventilation significantly increased from 3.9 ± 2.5 times during the pre-implementation period to 6.6 ± 3.5 times during the post-implementation period (p < 10-3). Mean duration of mechanical ventilation tended to be lower in the post-implementation period (8.3 ± 7.3 vs 6.6 ± 5.6 days, p = 0.094), but changes in either the trend per trimester from pre-implementation to post-implementation (p = 0.933) or the immediate change after implementation (p = 0.923) were not significant with segmented regression analysis. No significant change between pre- and post-implementation was shown for total dose of sedatives, withdrawal symptoms, agitation episodes, or unplanned endotracheal extubations.ConclusionsThese results were promising and suggested that implementation of a nurse-driven sedation protocol in a PICU was feasible. Evaluation of sedation and analgesia was better after the protocol implementation; duration of mechanical ventilation and occurrence of withdrawal symptoms tended to be reduced.

Project description:BackgroundThe optimal form of health care delivery for paediatric to adult inflammatory bowel disease transition of care is unknown. The primary purpose of this study was to establish current standard of care across Canada among adult gastroenterologists.MethodsAdult gastroenterologists interested in transition care were identified. Twenty-five anonymous surveys and 17 semistructured interviews representing 9 adult gastroenterology centers across 6 provinces were completed. Questions focused on the transition process, referral practices, information transfer and access to multidisciplinary resources. The need for expert guidance and transition-related quality indicators were identified. The interviews were audio-recorded, transcribed and coded in duplicate for qualitative thematic analysis.ResultsTransition practices included the following: transition clinic (n = 4) versus direct transfer (n = 5). Most transition patients were referred to academic centers. Transfer volume per center ranged from 12 to 100 per year. Transfer of information was optimized with shared electronic medical record and comprehensive referral package. The majority of the programs lacked consistent access to a multidisciplinary team. The strongest attributes related to health care provider interest in transition and complete information transfer. Areas for improvement included increased resource allocation: financial, logistical and personnel. All agreed that a consensus-based guidfmeline for adult phase of transition would be beneficial. Potential quality indicators included adherence to care, depression/anxiety scores and patient knowledge.ConclusionsThis Canadian study of adult gastroenterologists revealed that while practice patterns vary, most agree that a transition clinic with access to multidisciplinary resources would be beneficial. A consensus-based guideline and quality indicators to assess performance may standardize the adult phase of transition and optimize outcomes.

Project description:OBJECTIVE:The imaging evaluation of cystic fibrosis currently relies on chest radiography or computed tomography. Recently, digital chest tomosynthesis has been proposed as an alternative. We have developed a stationary digital chest tomosynthesis (s-DCT) system based on a carbon nanotube (CNT) linear x-ray source array. This system enables tomographic imaging without movement of the x-ray tube and allows for physiological gating. The goal of this study was to evaluate the feasibility of clinical CF imaging with the s-DCT system. MATERIALS AND METHODS:CF patients undergoing clinically indicated chest radiography were recruited for the study and imaged on the s-DCT system. Three board-certified radiologists reviewed both the CXR and s-DCT images for image quality relevant to CF. CF disease severity was assessed by Brasfield score on CXR and chest tomosynthesis score on s-DCT. Disease severity measures were also evaluated against subject pulmonary function tests. RESULTS:Fourteen patients underwent s-DCT imaging within 72 h of their chest radiograph imaging. Readers scored the visualization of proximal bronchi, small airways and vascular pattern higher on s-DCT than CXR. Correlation between the averaged Brasfield score and averaged tomosynthesis disease severity score for CF was -0.73, p = 0.0033. The CF disease severity score system for tomosynthesis had high correlation with FEV1 (r = -0.685) and FEF 25-75% (r = -0.719) as well as good correlation with FVC (r = -0.582). CONCLUSION:We demonstrate the potential of CNT x-ray-based s-DCT for use in the evaluation of cystic fibrosis disease status in the first clinical study of s-DCT. KEY POINTS:• Carbon nanotube-based linear array x-ray tomosynthesis systems have the potential to provide diagnostically relevant information for patients with cystic fibrosis without the need for a moving gantry. • Despite the short angular span in this prototype system, lung features such as the proximal bronchi, small airways and pulmonary vasculature have improved visualization on s-DCT compared with CXR. Further improvements are anticipated with longer linear x-ray array tubes. • Evaluation of disease severity in CF patients is possible with s-DCT, yielding improved visualization of important lung features and high correlation with pulmonary function tests at a relatively low dose.

Dataset Information

Improving transition from paediatric to adult cystic fibrosis care: programme implementation and evaluation.

Publications

Improving transition from paediatric to adult cystic fibrosis care: programme implementation and evaluation.

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