scholarly journals Perspectives of survivors, families and researchers on key outcomes for research in acute respiratory failure

Thorax ◽  
2017 ◽  
Vol 73 (1) ◽  
pp. 7-12 ◽  
Author(s):  
Victor D Dinglas ◽  
Caroline M Chessare ◽  
Wesley E Davis ◽  
Ann Parker ◽  
Lisa Aronson Friedman ◽  
...  
Keyword(s):  
Critical Care ◽  
Respiratory Failure ◽  
Acute Respiratory Failure ◽  
Family Members ◽  
International Classification Of Functioning ◽  
Future Research ◽  
Measurement Information ◽  
Patient Reported ◽  
Specific Outcome ◽  
Strongly Agree

BackgroundThere is heterogeneity among the outcomes evaluated in studies of survivors of acute respiratory failure (ARF).AimTo evaluate the importance of specific outcome domains to acute respiratory distress syndrome (ARDS) survivors, their family members and clinical researchers.MethodsNineteen outcome domains were identified from the National Institutes of Health’s Patient Reported Outcomes Measurement Information System; WHO’s International Classification of Functioning, Disability, and Health; Society of Critical Care Medicine’s Post-Intensive Care Syndrome (PICS); as well as patient, clinician and researcher input. We surveyed ARDS survivors, family members and critical care researchers, 279 respondents in total, using a 5-point scale (strongly disagree, disagree, neutral, agree and strongly agree) to rate the importance of measuring each domain in studies of ARF survivors’ postdischarge outcomes.Measurements and main resultsAt least 80% of patients and family members supported (ie, rated ‘agree’ or ‘strongly agree’) that 15 of the 19 domains should be measured in all future studies. Among researchers, 6 of 19 domains were supported, with researchers less supportive for all domains, except survival (95% vs 72% support). Overall, four domains were supported by all groups: physical function, cognitive function, return to work or prior activities and mental health.ConclusionPatient, family and researcher groups supported inclusion of outcome domains that fit within the PICS framework. Patients and family members also supported many additional domains, emphasising the importance of including patients/family, along with researchers, in consensus processes to select core outcome domains for future research studies.

Psychological Outcomes in Family Members of Acute Respiratory Failure Patients: Does Inter-ICU Transfer Play a Role?

CHEST Journal ◽  
2021 ◽  
Author(s):  
Nandita R. Nadig ◽  
Katherine R. Sterba ◽  
Annie N. Simpson ◽  
Kenneth J. Ruggiero ◽  
Catherine T. Hough ◽  
...  
Keyword(s):  
Respiratory Failure ◽  
Acute Respiratory Failure ◽  
Family Members ◽  
Psychological Outcomes ◽  
Icu Transfer

scholarly journals Promising New Approaches to Assess Cognitive Functioning in People with Multiple Sclerosis

2012 ◽  
Vol 14 (2) ◽  
pp. 71-76 ◽  
Author(s):  
Heather Becker ◽  
Alexa Stuifbergen ◽  
Janet Morrison
Keyword(s):  
Multiple Sclerosis ◽  
Cognitive Functioning ◽  
Performance Measures ◽  
Cognitive Abilities ◽  
Exploratory Study ◽  
White Women ◽  
Future Research ◽  
Measurement Information ◽  
Neurocognitive Performance ◽  
Patient Reported

Cognitive impairment has a major impact on the lives of people with multiple sclerosis (MS). Yet it is often underdiagnosed, and more-effective assessment methods are needed. In particular, brief measures that focus on cognitive functioning in daily life situations, are sensitive to modest change over time, and do not require a highly skilled assessor merit exploration. The purpose of this exploratory study was to investigate the performance of individuals with MS on three relatively new measures—the Patient-Reported Outcomes Measurement Information System (PROMIS) Cognitive Concerns and Abilities Scales and the Everyday Problems Test (EPT)—and to compare scores on these measures with scores on neurocognitive performance measures typically used to assess cognitive functioning in people with MS. Twenty-nine individuals with MS who reported cognitive concerns participated in the study. Most were non-Hispanic white women with relapsing-remitting MS that was diagnosed approximately 18 years previously. All three measures yielded reliability coefficients of 0.80 or above and also demonstrated sensitivity to change following an educational intervention. Scores on the Revised EPT (EPT-R) were moderately correlated with scores on five standard neuropsychological measures. Compared with scores on the PROMIS Cognitive Concerns Scale, those on the self-reported PROMIS Cognitive Abilities Scale tended to correlate more highly with the neurocognitive performance measures, although the correlations were generally small. While results of this exploratory study are promising, future research should be conducted with larger and more diverse samples of people with MS to determine the broader utility of these measures.

Development and validation of a patient-reported tool to evaluate legal and financial needs in patients with advanced cancer.

2014 ◽  
Vol 32 (31_suppl) ◽  
pp. 174-174
Author(s):  
Arif Kamal ◽  
Richard Morgan Bain ◽  
Yousuf Zafar ◽  
Hope Elizabeth Uronis ◽  
John H. Strickler ◽  
...  
Keyword(s):  
Palliative Care ◽  
Legal Status ◽  
Ease Of Use ◽  
Face Validity ◽  
Future Research ◽  
Screening Methods ◽  
Gastrointestinal Malignancies ◽  
Patients With Cancer ◽  
Patient Reported ◽  
Strongly Agree

174 Background: Cancer patients frequently report problems with finances, housing, advance care planning, and work-related issues. Because of these complex legal needs, cancer centers are developing Medical-Legal Programs (MLP) to connect referred patients with legal professionals. These programs lack validated screening methods to target services to those with the greatest legal distress. To date, no validated, patient-reported measure to assess the portfolio of legal needs has been developed for patients with cancer. Methods: We developed the Cancer Legal Screener to address five common domains within MLP practice: Housing; Income and Insurance; Employment; Family Stability; and Legal Status and General concerns. The 15 questions were then reviewed in two rounds for face validity by two of each: social workers, oncologists, palliative care physicians, attorneys, and lay persons. After two iterative updates, we piloted the screener in our palliative care and gastrointestinal malignancies clinics for six months. After participants completed the screener, they responded to a 10-item survey rating three areas: Consent/Presentation, Ease of Use, and Value to Care. Each question was measured on a 5-point Likert scale. Scores were weighted one through five and averages calculated. Results: We received scores from 79 patients. Their median age was 61 years; 39% were female, 29% were African-American. Regarding socioeconomic status, 75% had completed at least some college and 53% reported having an income level ≤ $50,000. During patient-reported validation testing, all 10 items across the three domains satisfied the feasibility criteria with average weighted satisfaction scores ranging from 3.22-3.89. Of patients surveyed, most indicated “Agree” or “Strongly Agree” regarding understandability of included questions (84%), prompts being “easy to follow” (81%), and “this form may help my doctors deliver better care” (63%). Conclusions: We have developed and validated one of the first patient-reported tools to assess medical-legal needs in patients with cancer. Future research will test triage models to target the appropriate legal resources to patients with the greatest legal needs.

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