Document Detail

Development and Validation of a Cystic Fibrosis Patient and Family Member Experience of Care Survey.
MedLine Citation:
PMID:  23542365     Owner:  NLM     Status:  Publisher    
OBJECTIVE:: The purpose of this study was to develop a cystic fibrosis (CF)-specific patient and family experience of care survey that CF care centers could use to inform quality improvement efforts. METHODS:: A literature search and query of CF care centers was conducted to identify existing surveys. Individuals with CF, their families, and health care professionals were also asked what to include. Following this process, a draft survey was developed and then reviewed by focus groups. Finally, a version was piloted at 25 CF care centers to validate and further refine the instrument. RESULTS:: No CF-specific surveys were found in the literature. Focus group participants stated that they understood the survey questions and that they covered important aspects of care, particularly infection control. The pilot test of the instrument with 485 participants supported its validity by demonstrating significant differences across centers and that most of the 3 care dimensions had acceptable internal consistency (Cronbach α: adults, 0.71-0.85; children, 0.68-0.79). CONCLUSION:: A CF-specific patient and family experience of care survey was developed with input from individuals with CF, their families, and health care professionals. The instrument was validated and has been deployed to CF care centers.
Karen Homa; Kathryn A Sabadosa; Eugene C Nelson; William H Rogers; Bruce C Marshall
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Publication Detail:
Journal Detail:
Title:  Quality management in health care     Volume:  22     ISSN:  1550-5154     ISO Abbreviation:  Qual Manag Health Care     Publication Date:    2013 April/June
Date Detail:
Created Date:  2013-4-1     Completed Date:  -     Revised Date:  -    
Medline Journal Info:
Nlm Unique ID:  9306156     Medline TA:  Qual Manag Health Care     Country:  -    
Other Details:
Languages:  ENG     Pagination:  100-116     Citation Subset:  -    
Leadership Preventive Medicine Residency Program, Dartmouth-Hitchcock Medical Center, Lebanon, New Hampshire (Dr Homa); The Dartmouth Institute for Health Care Policy and Clinical Practice, Geisel School of Medicine at Dartmouth, Hanover, New Hampshire (Ms Sabadosa and Dr Nelson); Dartmouth-Hitchcock Medical Center, Lebanon, New Hampshire (Dr Nelson); Institute for Clinical Research and Health Policy Studies, Tufts Medical Center, Boston Massachusetts, and Quality Data Management, Broadview Heights, Ohio (Dr Rogers); and The Cystic Fibrosis Foundation, Bethesda, Maryland (Dr Marshall).
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