Outcomes of repeat sweat testing in cystic fibrosis newborn screen positive infants.

BACKGROUND: Infants with a positive cystic fibrosis (CF) newborn screen, only one identified CFTR mutation (NBS+/1 mut), and an initial intermediate sweat chloride (30-59 mmol/L) should have repeat sweat chloride testing (SCT). However, the outcome of repeat SCT and the relationship between initial sweat Cl and subsequent CF diagnosis have not been reported. OBJECTIVE: The objective of this study was to analyze the outcomes of repeat SCT and subsequent CF diagnosis in NBS+/1 mut infants based on their initial sweat chloride concentration. METHODS: We retrospectively identified all infants born in Indiana from 2007 to 2017 with NBS+/1 mut and initial SCT in the intermediate range. For each infant, we recorded the initial and repeat SCT results and/or a final CF diagnosis. RESULTS: From 2007 through 2017 there were 2822 NBS+/1 mut infants of which 2613 (82%) had at least one SCT result. No infants with an initial SCT of 30-39 mmol/L were subsequently diagnosed with CF. Of the 31 infants with an initial SCT of 40-49 mmol/L, only 1 was subsequently diagnosed with CF. In contrast, 61% of those with SCTs of 50-59 mmol/L were later diagnosed with CF. CONCLUSION: These results suggest that infants with a positive NBS for CF and one CFTR mutationwhose initial sweat chloride concentration is 50-59 mmol/L need to be monitored more closely forCF with strong consideration for earlier repeat SCTs and immediate genotyping.

Critical Care Follow-up Clinics: A Scoping Review of Interventions and Outcomes.

OBJECTIVE: The purpose of this scoping review is to identify evidence describing benefits of interventions provided in intensive care unit (ICU) survivor follow-up clinics. BACKGROUND: Advances in ICU treatments have increased the number of survivors who require specialized care for ICU-related sequelae. Intensive care unit survivor follow-up clinics exist, yet little is known about the nature and impact of interventions provided in such clinics. A scoping review of publications about in-person post-ICU follow-up care was undertaken. METHOD: Ten databases were searched yielding 111 relevant unique publication titles and abstracts. Sample heterogeneity supported using a scoping review method. After excluding nonrelated publications, 33 reports were fully reviewed. Twenty international publications were included that described ICU follow-up clinic interventions and/or outcomes. RESULTS: Authors discussed very diverse interventions in 15 publications, and 9 reported some level of intervention effectiveness. Evidence was strongest that supported the use of prospective diaries as an intervention to prevent or improve psychological symptoms, whereas evidence to support implementation of other interventions was weak. CONCLUSIONS: Although ICU follow-up clinics exist, evidence for interventions and effectiveness of treatments in these clinics remains underexplored. IMPLICATIONS: Intensive care unit survivor follow-up clinics provide a venue for further interdisciplinary intervention research that could lead to better health outcomes for ICU survivors.

The relationship between hope and patient activation in consumers with schizophrenia: Results from longitudinal analyses.

Hope (goal-directed thinking) and patient activation (knowledge and skills to manage one's illness) are both important in managing chronic conditions like schizophrenia. The relationship between hope and patient activation has not been clearly defined. However, hope may be viewed as a foundational, motivating factor that can lead to greater involvement in care and feelings of efficacy. The purpose of the present study was to understand the prospective relationship between hope and patient activation in a sample of adults with schizophrenia (N=118). This study was a secondary data analysis from a study on Illness Management and Recovery (IMR) - a curriculum-based approach to schizophrenia self-management. Data were collected at baseline (prior to any intervention), and at 9 and 18-month follow-up. As predicted, hope and patient activation were significantly related with each other, showing large positive concurrent correlations. Demographics and background characteristics were not significantly related to patient activation or hope. Longitudinal analyses found no specific directional effect, yet suggested that hope and patient activation mutually influence each other over time. Our findings add flexibility in designing recovery-based interventions - fostering hope may not be a pre-requisite for activating consumers to be more involved in their own care.

Consumer and relationship factors associated with shared decision making in mental health consultations.

OBJECTIVE: This study explored the association between shared decision making and consumers' illness management skills and consumer-provider relationships. METHODS: Medication management appointments for 79 consumers were audio recorded. Independent coders rated overall shared decision making, minimum level of shared decision making, and consumer-provider agreement for 63 clients whose visit included a treatment decision. Mental health diagnoses, medication adherence, patient activation, illness management, working alliance, and length of consumer-provider relationships were also assessed. Correlation analyses were used to determine relationships among measures. RESULTS: Overall shared decision making was not associated with any variables. Minimum levels of shared decision making were associated with higher scores on the bond subscale of the Working Alliance Inventory, indicating a higher degree of liking and trust, and with better medication adherence. Agreement was associated with shorter consumer-provider relationships. CONCLUSIONS: Consumer-provider relationships and shared decision making might have a more nuanced association than originally thought.

Agenda setting in psychiatric consultations: an exploratory study.

OBJECTIVE: Patient- or consumer-centeredness has been recognized as a critical component of quality in primary health care, but is only beginning to be recognized and studied in mental health. Among the first opportunities to be consumer-centered is collaboratively producing an agenda of topics to be covered during a clinic visit. Early agenda setting sets the stage for what is to come and can affect the course, direction, and quality of care. The purpose of this work is to study agenda setting practices among 8 prescribers (5 psychiatrists and 3 nurse practitioners) at the beginning of their encounters with 124 consumers diagnosed with schizophrenia spectrum disorders (56%), bipolar disorder (23%), major depression (15%), and other disorders (6%). METHOD: We modified an extant agenda-setting rubric by adding behaviors identified by a multidisciplinary team who iteratively reviewed transcripts of the visit openings. Once overall consensus was achieved, two research assistants coded all of the transcripts. Twenty-five transcripts were scored by both raters to establish interrater reliability. RESULTS: We identified 10 essential elements of agenda setting. Almost 10% of visits had no agenda set, and only 1 of 3 encounters had partial or complete elicitation of a single concern. Few additional concerns (4%) were solicited, and no encounter contained more than 6 essential elements. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: Collaborative agenda setting represents a unique opportunity to translate the concept of consumer-centeredness into mental health care. Initial results suggest the rating system is reliable, but the essential elements are not being used in practice.