Malin C Berghammer1, Eva Mattsson2, Bengt Johansson3, Philip Moons4, Mikael Dellborg1. 1. 1Institute of Medicine,The Sahlgrenska Academy at University of Gothenburg,Gothenburg,Sweden. 2. 4Department of Cardiology,Karolinska University Hospital,Stockholm,Sweden. 3. 5Department of Public Health and Clinical Medicine,Umeå University,Umeå,Sweden. 4. 2Centre for Person-Centred Care (GPCC),University of Gothenburg,Gothenburg,Sweden.
Abstract
BACKGROUND: The last decade has seen a vast increase in the use of patient-reported outcomes. As patient-reported outcomes are used in order to capture patients' perspectives of their health and illness, it is a prerequisite for accurate patient-reported outcome evaluations to use representative samples. In order to evaluate representativeness, the present study focussed on the comparison between participants and non-participants in the Swedish branch of the international study APPROACH-IS (Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study), regarding demographic, clinical, and health status characteristics. METHODS: Eligible patients for APPROACH-IS were identified and selected from SWEDCON, the Swedish registry for congenital heart disease (CHD). Overall, 912 eligible patients were identified, of whom 471 participated, 398 did not participate, and 43 were either unreachable or declined to participate in APPROACH-IS. The participants and non-participants were compared in terms of statistical significance and effect sizes. RESULTS: Significant differences were observed between participants and non-participants for sex, age, primary diagnosis, number of cardiac operations, and fatigue; however, the effect sizes were in general small, except for the difference in primary diagnosis. No differences between the two groups were found in number of catheterisations, implanted device, the distribution of NYHA functional class, or health status and symptoms. CONCLUSIONS: This study shows that participants and non-participants are relatively comparable groups, which confirms the representativeness of the participants. The Swedish data from APPROACH-IS can therefore be reliably generalised to the population of adults with CHD in Sweden.
BACKGROUND: The last decade has seen a vast increase in the use of patient-reported outcomes. As patient-reported outcomes are used in order to capture patients' perspectives of their health and illness, it is a prerequisite for accurate patient-reported outcome evaluations to use representative samples. In order to evaluate representativeness, the present study focussed on the comparison between participants and non-participants in the Swedish branch of the international study APPROACH-IS (Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study), regarding demographic, clinical, and health status characteristics. METHODS: Eligible patients for APPROACH-IS were identified and selected from SWEDCON, the Swedish registry for congenital heart disease (CHD). Overall, 912 eligible patients were identified, of whom 471 participated, 398 did not participate, and 43 were either unreachable or declined to participate in APPROACH-IS. The participants and non-participants were compared in terms of statistical significance and effect sizes. RESULTS: Significant differences were observed between participants and non-participants for sex, age, primary diagnosis, number of cardiac operations, and fatigue; however, the effect sizes were in general small, except for the difference in primary diagnosis. No differences between the two groups were found in number of catheterisations, implanted device, the distribution of NYHA functional class, or health status and symptoms. CONCLUSIONS: This study shows that participants and non-participants are relatively comparable groups, which confirms the representativeness of the participants. The Swedish data from APPROACH-IS can therefore be reliably generalised to the population of adults with CHD in Sweden.
Authors: Liesbet Van Bulck; Eva Goossens; Koen Luyckx; Silke Apers; Erwin Oechslin; Corina Thomet; Werner Budts; Junko Enomoto; Maayke A Sluman; Chun-Wei Lu; Jamie L Jackson; Paul Khairy; Stephen C Cook; Shanthi Chidambarathanu; Luis Alday; Katrine Eriksen; Mikael Dellborg; Malin Berghammer; Bengt Johansson; Andrew S Mackie; Samuel Menahem; Maryanne Caruana; Gruschen Veldtman; Alexandra Soufi; Susan M Fernandes; Kamila White; Edward Callus; Shelby Kutty; Philip Moons Journal: BMC Health Serv Res Date: 2020-06-03 Impact factor: 2.655
Authors: Liesbet Van Bulck; Eva Goossens; Koen Luyckx; Leen Oris; Silke Apers; Philip Moons Journal: J Am Heart Assoc Date: 2018-05-22 Impact factor: 5.501
Authors: Markus Saarijärvi; Lars Wallin; Philip Moons; Hanna Gyllensten; Ewa-Lena Bratt Journal: BMC Med Res Methodol Date: 2020-08-03 Impact factor: 4.615