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

Background: Cystic fibrosis (CF) affects more than 80,000 people worldwide, having a considerable impact on the quality of life of patients and their caregivers, who assist patients with time-consuming treatment regimens. Despite this, a review of the available evidence has not been previously undertaken. This systematic literature review aimed to identify the humanistic and economic burdens of CF on caregivers. Methods: A systematic literature review was conducted, in accordance with Preferred Reporting Items for Systematic reviews and Meta-Analyses guidelines. Publications reporting outcomes for the caregivers of people with CF, including utility data, health status, and occupational impact, were reviewed. Sources searched were Embase (OvidSP), Medline (PubMed), the Cochrane Database of Systematic Reviews, and the Epistemonikos database, from 2010 to March 2020. A subsequent search with updated terms identified articles up to April 2020. Electronic searches were supplemented by hand searches to capture all relevant literature. Results: A total of 889 articles reporting humanistic burden and 310 reporting economic burden were identified. Following full-text screening by two independent reviewers, 72 articles were included in the review, of which 65 and 17 reported data on humanistic and economic burdens, respectively, with 10 reporting on both. The reviewed literature covered several outcomes and identified multiple key findings: greater disease severity is associated with the reporting of greater caregiver burden and lower utility scores of quality of life; reduced patient lung function is associated with increased caregiver depression and anxiety; and caregiving causes significant occupational impact, with pulmonary exacerbations decreasing caregiver productivity by up to a third compared with the patient being in a ‘well’ state. Conclusion: Findings from this systematic literature review highlight the substantial humanistic and economic burdens borne by the caregivers of people with CF. Future research would help to further inform on the link between disease severity and caregiver burden.

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“…Two additional studies reported related outcomes. 87,88 Sleep quality. Six studies reported data on caregiver sleep quality.…”

Section: Humanistic Caregiver Burdenmentioning

confidence: 99%

Caregiver burden in cystic fibrosis: a systematic literature review

Daly

Ruane

O'Reilly

et al. 2022

Ther Adv Respir Dis

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“…1 Additionally, individuals with CF frequently face anxiety from healthcare experiences and procedures. 12 13 Illness-specific anxiety is associated with impaired functioning, emotional distress and lower quality of life. 14…”

Section: Introduction Background and Knowledgementioning

confidence: 99%

Systematic depression and anxiety screening for patients and caregivers: implementation and process improvement in a cystic fibrosis clinic

et al. 2021

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IntroductionDepression and anxiety are common. Rates are significantly higher in cystic fibrosis (CF), and impact health outcomes. Screening is recommended, but is difficult to implement/sustain annually in a busy CF centre. The aim was to develop an acceptable model for depression and anxiety screening in adolescents/adults with CF and their caregivers that could be sustained and shared.MethodsQuality improvement methodology with plan-do-study-act cycles, flow diagrams, review of data monthly with our designated ‘Mental Health Team’ and caregiver satisfaction surveys, were used to begin screening in clinics and to improve the process. We then piloted our process at a larger paediatric CF centre.ResultsPrior to 2013, screening was not performed at our CF centre. After the first quarter of depression screening, 88% of adolescents and 69% of adults with CF were screened. The process was refined. By the second year, 99% of patients were screened. Anxiety screening began in year three; 97%–99% of patients were screened for both anxiety and depression in years 3–5. Annual caregiver screening rates were >95%. Screening was changed from Patient Health Questionnaire-2 (PHQ-2) to PHQ-9 due to better sensitivity in caregivers, and expanded to patients. Anxiety screening began in year 3 with the Generalised Anxiety Disorder-7 questionnaire. Patients and caregivers reported acceptance of screening. At the larger paediatric centre used as a pilot, 89.6% of patients were screened in year 1. Feedback included recommendations to improve tracking/follow-up of positive screens.ConclusionsDevelopment and implementation of a stepwise process for depression and anxiety screening was successful in a paediatric/adult CF clinic, due to constant re-evaluation by an engaged team with feedback from patients via survey. A systematic approach at a busy CF centre can serve as a model to implement screening in a clinic.

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“…The Pediatric CF Center at Cincinnati Children's Hospital is a quaternary care center located in the Midwest caring for approximately 250 individuals with CF. Cincinnati Children's Hospital is a leader in healthcare QI, and the CF Center has significant experience implementing multi‐disciplinary QI projects to advance clinical outcomes 21–26 . Additionally, the CF Center participates in the CF Learning Network, a multi‐site collaborative supported by the CF Foundation that uses QI methodology to improve patient outcomes for the CF community.…”

Section: Methodsmentioning

confidence: 99%

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

Hente

Weiland

Müllen

et al. 2021

Pediatric Pulmonology

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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.

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

Cited by 8 publications

References 13 publications

Caregiver burden in cystic fibrosis: a systematic literature review

Caregiver burden in cystic fibrosis: a systematic literature review

Systematic depression and anxiety screening for patients and caregivers: implementation and process improvement in a cystic fibrosis clinic

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

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