Addressing lung transplant with adults with cystic fibrosis: A qualitative analysis of patients' perspectives and experiences.

Referral for lung transplantation is a complex process that typically begins with a discussion in cystic fibrosis (CF) clinic. We performed a secondary analysis of interviews conducted at the University of Washington CF Clinic as part of a study of unmet palliative care needs, June 2015 - January 2016, among adults with moderate-to-severe CF-related lung disease. Content analysis methods were used to identify themes related to discussion of lung transplant in CF clinic. Thirty-two of 48 interviews (67%) addressed transplant. An individual's willingness to discuss transplant was not necessarily related to the degree of lung function impairment. Patients reported reliance on CF physicians as a source of accurate information about transplant. Individuals with CF sometimes reported feeling too old or not worthy of transplant. Many had apprehensive or ambivalent feelings towards transplant. Patient-identified barriers and facilitators to lung transplant discussions can inform physicians as they discuss transplant in CF clinic.

Exploring Opportunities for Primary Outpatient Palliative Care for Adults with Cystic Fibrosis: A Mixed-Methods Study of Patients' Needs.

BACKGROUND: Persons with cystic fibrosis (CF) experience high morbidity and mortality, yet little is known about their palliative care needs and how clinicians may address these needs. OBJECTIVES: (1) To identify palliative care and advance care planning needs of patients with CF and their families; and (2) to identify clinicians' potential roles in meeting these needs. METHODS: A mixed-methods study of adult patients (age ≥18 years) with moderate-to-severe CF [forced expiratory volume in the first second (FEV1) <65% predicted] were recruited from a CF Center. Semi-structured interviews (30-60 minutes) and questionnaires were administered in person or by phone. Grounded theory was used to analyze the interviews. Questionnaires were analyzed descriptively. RESULTS: Forty-nine patients (FEV1 % range = 19%-63%) participated; the participation rate was 80% for eligible patients. Three main domains of palliative care needs were identified: (1) to be listened to, feel heard, and be "seen"; (2) understanding the context around CF and its trajectory, with the goal of preparing for the future; and (3) information about, and potential solutions to, practical and current circumstances that cause stress. In questionnaires, few patients (4.3%) reported talking with their clinician about their wishes for care if they were to become sicker, but mixed-methods data demonstrated that more than half of participants were willing to receive palliative care services provided those services were adapted to CF. CONCLUSION: Patients expressed a need for and openness to palliative care services, as well as some reluctance. They appreciated clinician communication that was open, forthcoming, and attuned to individualized concerns.

Video Analysis of Factors Associated With Response Time to Physiologic Monitor Alarms in a Children's Hospital.

Importance: Bedside monitor alarms alert nurses to life-threatening physiologic changes among patients, but the response times of nurses are slow. Objective: To identify factors associated with physiologic monitor alarm response time. Design, Setting, and Participants: This prospective cohort study used 551 hours of video-recorded care administered by 38 nurses to 100 children in a children's hospital medical unit between July 22, 2014, and November 11, 2015. Exposures: Patient, nurse, and alarm-level factors hypothesized to predict response time. Main Outcomes and Measures: We used multivariable accelerated failure-time models stratified by each nurse and adjusted for clustering within patients to evaluate associations between exposures and response time to alarms that occurred while the nurse was outside the room. Results: The study participants included 38 nurses, 100% (n = 38) of whom were white and 92% (n = 35) of whom were female, and 100 children, 51% (n = 51) of whom were male. The race/ethnicity of the child participants was 45% (n = 45) black or African American, 33% (n = 33) white, 4% (n = 4) Asian, and 18% (n = 18) other. Of 11 745 alarms among 100 children, 50 (0.5%) were actionable. The adjusted median response time among nurses was 10.4 minutes (95% CI, 5.0-15.8) and varied based on the following variables: if the patient was on complex care service (5.3 minutes [95% CI, 1.4-9.3] vs 11.1 minutes [95% CI, 5.6-16.6] among general pediatrics patients), whether family members were absent from the patient's bedside (6.3 minutes [95% CI, 2.2-10.4] vs 11.7 minutes [95% CI, 5.9-17.4] when family present), whether a nurse had less than 1 year of experience (4.4 minutes [95% CI, 3.4-5.5] vs 8.8 minutes [95% CI, 7.2-10.5] for nurses with 1 or more years of experience), if there was a 1 to 1 nursing assignment (3.5 minutes [95% CI, 1.3-5.7] vs 10.6 minutes [95% CI, 5.3-16.0] for nurses caring for 2 or more patients), if there were prior alarms requiring intervention (5.5 minutes [95% CI, 1.5-9.5] vs 10.7 minutes [5.2-16.2] for patients without intervention), and if there was a lethal arrhythmia alarm (1.2 minutes [95% CI, -0.6 to 2.9] vs 10.4 minutes [95% CI, 5.1-15.8] for alarms for other conditions). Each hour that elapsed during a nurse's shift was associated with a 15% longer response time (6.1 minutes [95% CI, 2.8-9.3] in hour 2 vs 14.1 minutes [95% CI, 6.4-21.7] in hour 8). The number of nonactionable alarms to which the nurse was exposed in the preceding 120 minutes was not associated with response time. Conclusions and Relevance: Response time was associated with factors that likely represent the heuristics nurses use to assess whether an alarm represents a life-threatening condition. The nurse to patient ratio and physical and mental fatigue (measured by the number of hours into a shift) represent modifiable factors associated with response time. Chronic alarm fatigue resulting from long-term exposure to nonactionable alarms may be a more important determinant of response time than short-term exposure.

Systematic Review of Physiologic Monitor Alarm Characteristics and Pragmatic Interventions to Reduce Alarm Frequency.

BACKGROUND: Alarm fatigue from frequent nonactionable physiologic monitor alarms is frequently named as a threat to patient safety. PURPOSE: To critically examine the available literature relevant to alarm fatigue. DATA SOURCES: Articles published in English, Spanish, or French between January 1980 and April 2015 indexed in PubMed, Cumulative Index to Nursing and Allied Health Literature, Scopus, Cochrane Library, Google Scholar, and ClinicalTrials.gov. STUDY SELECTION: Articles focused on hospital physiologic monitor alarms addressing any of the following: (1) the proportion of alarms that are actionable, (2) the relationship between alarm exposure and nurse response time, and (3) the effectiveness of interventions in reducing alarm frequency. DATA EXTRACTION: We extracted data on setting, collection methods, proportion of alarms determined to be actionable, nurse response time, and associations between interventions and alarm rates. DATA SYNTHESIS: Our search produced 24 observational studies focused on alarm characteristics and response time and 8 studies evaluating interventions. Actionable alarm proportion ranged from <1% to 36% across a range of hospital settings. Two studies showed relationships between high alarm exposure and longer nurse response time. Most intervention studies included multiple components implemented simultaneously. Although studies varied widely, and many had high risk of bias, promising but still unproven interventions include widening alarm parameters, instituting alarm delays, and using disposable electrocardiographic wires or frequently changed electrocardiographic electrodes. CONCLUSIONS: Physiologic monitor alarms are commonly nonactionable, and evidence supporting the concept of alarm fatigue is emerging. Several interventions have the potential to reduce alarms safely, but more rigorously designed studies with attention to possible unintended consequences are needed.

Transitioning Adolescents and Young Adults With Sickle Cell Disease From Pediatric to Adult Health Care: Provider Perspectives.

The transition from pediatric to adult health care is often challenging for adolescents and young adults with sickle cell disease (SCD). Our study aimed to identify (1) measures of success for the transition to adult health care; and (2) barriers and facilitators to this process. We interviewed 13 SCD experts and asked them about their experiences caring for adolescents and young adults with SCD. Our interview guide was developed based on Social-Ecological Model of Adolescent and Young Adult Readiness to Transition framework, and interviews were coded using the constant comparative method. Our results showed that transition success was measured by health care utilization, quality of life, and continuation on a stable disease trajectory. We also found that barriers to transition include negative experiences in the emergency department, sociodemographic factors, and adolescent skills. Facilitators include a positive relationship with the provider, family support, and developmental maturity. Success in SCD transition is primarily determined by the patients' quality of relationships with their parents and providers and their developmental maturity and skills. Understanding these concepts will aid in the development of future evidence-based transition care models.

Association between exposure to nonactionable physiologic monitor alarms and response time in a children's hospital.

BACKGROUND: Alarm fatigue is reported to be a major threat to patient safety, yet little empirical data support its existence in the hospital. OBJECTIVE: To determine if nurses exposed to high rates of nonactionable physiologic monitor alarms respond more slowly to subsequent alarms that could represent life-threatening conditions. DESIGN: Observational study using video. SETTING: Freestanding children's hospital. PATIENTS: Pediatric intensive care unit (PICU) patients requiring inotropic support and/or mechanical ventilation, and medical ward patients. INTERVENTION: None. MEASUREMENTS: Actionable alarms were defined as correctly identifying physiologic status and warranting clinical intervention or consultation. We measured response time to alarms occurring while there were no clinicians in the patient's room. We evaluated the association between the number of nonactionable alarms the patient had in the preceding 120 minutes (categorized as 0-29, 30-79, or 80+ alarms) and response time to subsequent alarms in the same patient using a log-rank test that accounts for within-nurse clustering. RESULTS: We observed 36 nurses for 210 hours with 5070 alarms; 87.1% of PICU and 99.0% of ward clinical alarms were nonactionable. Kaplan-Meier plots showed incremental increases in response time as the number of nonactionable alarms in the preceding 120 minutes increased (log-rank test stratified by nurse P < 0.001 in PICU, P = 0.009 in the ward). CONCLUSIONS: Most alarms were nonactionable, and response time increased as nonactionable alarm exposure increased. Alarm fatigue could explain these findings. Future studies should evaluate the simultaneous influence of workload and other factors that can impact response time.

Barriers and facilitators to successful transition from pediatric to adult inflammatory bowel disease care from the perspectives of providers.

BACKGROUND: For adolescents and young adults (AYA) with inflammatory bowel disease (IBD), the transition from pediatric to adult care is often challenging and associated with gaps in care. Our study objectives were to (1) identify outcomes for evaluating transition success and (2) elicit the major barriers and facilitators of successful transition. METHODS: We interviewed pediatric and adult IBD providers from across the United States with experience caring for AYAs with IBD until thematic saturation was reached after 12 interviews. We elicited the participants' backgrounds, examples of successful and unsuccessful transition of AYAs for whom they cared, and recommendations for improving transition using the Social-Ecological Model of Adolescent and Young Adult Readiness to Transition framework. We coded interview transcripts using the constant comparative method and identified major themes. RESULTS: Participants reported evaluating transition success and failure using health care utilization outcomes (e.g., maintaining continuity with adult providers), health outcomes (e.g., stable symptoms), and quality of life outcomes (e.g., attending school). The patients' level of developmental maturity (i.e., ownership of care) was the most prominent determinant of transition outcomes. The style of parental involvement (i.e., helicopter parent versus optimally involved parent) and the degree of support by providers (e.g., care coordination) also influenced outcomes. CONCLUSIONS: IBD transition success is influenced by a complex interplay of patient developmental maturity, parenting style, and provider support. Multidisciplinary IBD care teams should aim to optimize these factors for each patient to increase the likelihood of a smooth transfer to adult care.

Cost-benefit analysis of a medical emergency team in a children's hospital.

OBJECTIVES: Medical emergency teams (METs) can reduce adverse events in hospitalized children. We aimed to model the financial costs and benefits of operating an MET and determine the annual reduction in critical deterioration (CD) events required to offset MET costs. METHODS: We performed a single-center cohort study between July 1, 2007 and March 31, 2012 to determine the cost of CD events (unplanned transfers to the ICU with mechanical ventilation or vasopressors in the 12 hours after transfer) as compared with transfers to the ICU without CD. We then performed a cost-benefit analysis evaluating varying MET compositions and staffing models (freestanding or concurrent responsibilities) on the annual reduction in CD events needed to offset MET costs. RESULTS: Patients who had CD cost $99,773 (95% confidence interval, $69,431 to $130,116; P < .001) more during their post-event hospital stay than transfers to the ICU that did not meet CD criteria. Annual MET operating costs ranged from $287,145 for a nurse and respiratory therapist team with concurrent responsibilities to $2,358,112 for a nurse, respiratory therapist, and ICU attending physician freestanding team. In base-case analysis, a nurse, respiratory therapist, and ICU fellow team with concurrent responsibilities cost $350,698 per year, equivalent to a reduction of 3.5 CD events. CONCLUSIONS: CD is expensive. The costs of operating a MET can plausibly be recouped with a modest reduction in CD events. Hospitals reimbursed with bundled payments could achieve real financial savings by reducing CD with an MET.

Video methods for evaluating physiologic monitor alarms and alarm responses.

False physiologic monitor alarms are extremely common in the hospital environment. High false alarm rates have the potential to lead to alarm fatigue, leading nurses to delay their responses to alarms, ignore alarms, or disable them entirely. Recent evidence from the U.S. Food and Drug Administration (FDA) and The Joint Commission has demonstrated a link between alarm fatigue and patient deaths. Yet, very little scientific effort has focused on the rigorous quantitative measurement of alarms and responses in the hospital setting. We developed a system using multiple temporarily mounted, minimally obtrusive video cameras in hospitalized patients' rooms to characterize physiologic monitor alarms and nurse responses as a proxy for alarm fatigue. This allowed us to efficiently categorize each alarm's cause, technical validity, actionable characteristics, and determine the nurse's response time. We describe and illustrate the methods we used to acquire the video, synchronize and process the video, manage the large digital files, integrate the video with data from the physiologic monitor alarm network, archive the video to secure servers, and perform expert review and annotation using alarm "bookmarks." We discuss the technical and logistical challenges we encountered, including the root causes of hardware failures as well as issues with consent, confidentiality, protection of the video from litigation, and Hawthorne-like effects. The description of this video method may be useful to multidisciplinary teams interested in evaluating physiologic monitor alarms and alarm responses to better characterize alarm fatigue and other patient safety issues in clinical settings.