Beatrix Algurén1,2, Tomas Jernberg3, Peter Vasko4, Melissa Selb5,6, Michaela Coenen5,7,8. 1. Faculty of Education, Department of Food and Nutrition, and Sport Science, University of Gothenburg, Gothenburg, Sweden. 2. The Jönköping Academy for Improvement of Health and Welfare, School of Health Sciences, Jönköping University, Jönköping, Sweden. 3. Department of Clinical Sciences, Danderyd University Hospital, Karolinska Institute, Stockholm, Sweden. 4. Department of Internal Medicine, Central Hospital, Växjö, Sweden. 5. ICF Research Branch, a cooperation partner within the WHO Collaborating Centre for the Family of International Classifications (at DIMDI), Nottwil, Switzerland. 6. Swiss Paraplegic Research, Nottwil, Switzerland. 7. Department of Medical Information Processing, Biometry and Epidemiology-IBE, Chair of Public Health and Health Services Research, Research Unit for Biopsychosocial Health, Ludwig-Maximilians-Universität (LMU) Munich, Munich, Germany. 8. Pettenkofer School of Public Health (PSPH), Munich, Germany.
Abstract
BACKGROUND: Quality standards are important for improving health care by providing compelling evidence for best practice. High quality person-centered health care requires information on patients' experience of disease and of functioning in daily life. OBJECTIVE: To analyze and compare the content of five Swedish National Quality Registries (NQRs) and two standard sets of the International Consortium of Health Outcomes Measurement (ICHOM) related to cardiovascular diseases. MATERIALS AND METHODS: An analysis of 2588 variables (= data items) of five NQRs-the Swedish Registry of Congenital Heart Disease, Swedish Cardiac Arrest Registry, Swedish Catheter Ablation Registry, Swedish Heart Failure Registry, SWEDEHEART (including four sub-registries) and two ICHOM standard sets-the Heart Failure Standard Set and the Coronary Artery Disease Standard Set. According to the name and definition of each variable, the variables were mapped to Donabedian's quality criteria, whereby identifying whether they capture health care processes or structures or patients' health outcomes. Health outcomes were further analyzed whether they were clinician- or patient-reported and whether they capture patients' physiological functions, anatomical structures or activities and participation. RESULTS: In total, 606 variables addressed process quality criteria (31%), 58 structure quality criteria (3%) and 760 outcome quality criteria (38%). Of the outcomes reported, 85% were reported by clinicians and 15% by patients. Outcome variables addressed mainly 'Body functions' (n = 392, 55%) or diseases (n = 209, 29%). Two percent of all documented data captured patients' lived experience of disease and their daily activities and participation (n = 51, 3% of all variables). CONCLUSIONS: Quality standards in the cardiovascular field focus predominately on processes (e.g. treatment) and on body functions-related outcomes. Less attention is given to patients' lived experience of disease and their daily activities and participation. The results can serve as a starting-point for harmonizing data and developing a common person-centered quality indicator set.
BACKGROUND: Quality standards are important for improving health care by providing compelling evidence for best practice. High quality person-centered health care requires information on patients' experience of disease and of functioning in daily life. OBJECTIVE: To analyze and compare the content of five Swedish National Quality Registries (NQRs) and two standard sets of the International Consortium of Health Outcomes Measurement (ICHOM) related to cardiovascular diseases. MATERIALS AND METHODS: An analysis of 2588 variables (= data items) of five NQRs-the Swedish Registry of Congenital Heart Disease, Swedish Cardiac Arrest Registry, Swedish Catheter Ablation Registry, Swedish Heart Failure Registry, SWEDEHEART (including four sub-registries) and two ICHOM standard sets-the Heart Failure Standard Set and the Coronary Artery Disease Standard Set. According to the name and definition of each variable, the variables were mapped to Donabedian's quality criteria, whereby identifying whether they capture health care processes or structures or patients' health outcomes. Health outcomes were further analyzed whether they were clinician- or patient-reported and whether they capture patients' physiological functions, anatomical structures or activities and participation. RESULTS: In total, 606 variables addressed process quality criteria (31%), 58 structure quality criteria (3%) and 760 outcome quality criteria (38%). Of the outcomes reported, 85% were reported by clinicians and 15% by patients. Outcome variables addressed mainly 'Body functions' (n = 392, 55%) or diseases (n = 209, 29%). Two percent of all documented data captured patients' lived experience of disease and their daily activities and participation (n = 51, 3% of all variables). CONCLUSIONS: Quality standards in the cardiovascular field focus predominately on processes (e.g. treatment) and on body functions-related outcomes. Less attention is given to patients' lived experience of disease and their daily activities and participation. The results can serve as a starting-point for harmonizing data and developing a common person-centered quality indicator set.
Authors: Robert L McNamara; Erica S Spatz; Thomas A Kelley; Caleb J Stowell; John Beltrame; Paul Heidenreich; Ricard Tresserras; Tomas Jernberg; Terrance Chua; Louise Morgan; Bishnu Panigrahi; Alba Rosas Ruiz; John S Rumsfeld; Lawrence Sadwin; Mark Schoeberl; David Shahian; Clive Weston; Robert Yeh; Jack Lewin Journal: J Am Heart Assoc Date: 2015-05-19 Impact factor: 5.501
Authors: Eugene C Nelson; Mary Dixon-Woods; Paul B Batalden; Karen Homa; Aricca D Van Citters; Tamara S Morgan; Elena Eftimovska; Elliott S Fisher; John Ovretveit; Wade Harrison; Cristin Lind; Staffan Lindblad Journal: BMJ Date: 2016-07-01