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Respondent satisfaction regarding SF-36 and EQ-5D, and patients' perspectives concerning health outcome assessment within routine health care
Linköping University, Faculty of Health Sciences. Linköping University, Department of Social and Welfare Studies, Natural Science - Medicine - Esthetics - Communication .
IMH Hälsouniversitetet, Linköpings Universitet.
Linköping University, Faculty of Health Sciences. Linköping University, Department of Department of Health and Society, Division of Preventive and Social Medicine and Public Health Science. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Acute Internal Medicine.
Linköping University, Faculty of Health Sciences. Linköping University, Department of Department of Health and Society, Division of Preventive and Social Medicine and Public Health Science. Östergötlands Läns Landsting, Centre for Public Health Sciences, Centre for Public Health Sciences.
2007 (English)In: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 16, no 10, 1647-1654 p.Article in journal (Refereed) Published
Abstract [en]

Objective: To investigate respondent satisfaction regarding SF-36 and EQ-5D and patients' perspectives concerning health outcome assessment within routine health care. Methods: Eighteen Swedish hospitals participated in the study which included 30 patient intervention groups (e.g. education groups for patients with ischemic heart disease or chronic obstructive pulmonary disease). Patients responded to SF-36 and EQ-5D before and after ordinary interventions (n = 463), and then completed an evaluation form. Results: Regarding respondent satisfaction, most patients found both questionnaires easy to understand (70% vs. 75% for SF-36 and EQ-5D respectively), easy to respond to (54% vs. 60%), and that they gave the ability of describing their health in a comprehensive way (68% for both). Health outcome assessment in routine health care was perceived as valuable by 57% of the patients, while 4% disapproved. Most patients (68%) considered both questionnaires equally suitable, 25% preferred SF-36 and 8% EQ-5D. Among those who were more satisfied with a short questionnaire (EQ-5D), several still preferred a longer and more comprehensive questionnaire (SF-36). Conclusion: Health outcome assessment within routine health care seems to be acceptable, and even appreciated, by patients. Questionnaire length and ease of response were not found to be crucial arguments in choosing between SF-36 and EQ-5D. © 2007 Springer Science+Business Media B.V.

Place, publisher, year, edition, pages
2007. Vol. 16, no 10, 1647-1654 p.
Keyword [en]
outcome assessment, SF-36, EQ-5D, patient perspective, respondent satisfaction
National Category
Social Sciences
Identifiers
URN: urn:nbn:se:liu:diva-39617DOI: 10.1007/s11136-007-9263-8Local ID: 50285OAI: oai:DiVA.org:liu-39617DiVA: diva2:260466
Available from: 2009-10-10 Created: 2009-10-10 Last updated: 2017-12-13
In thesis
1. The respondent’s perspective in health-related surveys
Open this publication in new window or tab >>The respondent’s perspective in health-related surveys
2010 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Declining response rates are threatening the usefulness of and confidence in survey data. Survey practitioners have therefore studied why nonrespondents refuse to respond and have tried to counter the declining response rates by intensified follow-up methods. Such efforts sometimes yield negative reactions among respondents. This thesis focuses on the respondent’s perspective in self-administered health-related surveys. The aim was to investigate positive and negative aspects that respondents experience when participating in surveys, to study factors that could increase motivation and to study possibilities to increase response rates in a way that promotes data quality as well as positive experiences among respondents. Self-Determination Theory is a motivation theory that was used as a theoretical framework.

Paper I is a study regarding two self-administered health questionnaires among patients in 20 intervention groups in 18 Swedish hospitals. Paper II is a qualitative analysis of data from telephone interviews with respondents to a self-administered health-related survey of the population in the county of Östergötland. Paper III is a randomized experiment in a self-administered survey of a random sample of parents in the municipality of Stockholm. Paper IV is an experimental study concerning a self-administered health questionnaire in a random sample of the general adult population in the county of Östergötland.

The results from paper I show that questionnaire length and ease of response were not crucial arguments in choosing between two health questionnaires for use in routine health care. Instead, the most common motives for the choice concerned aspects of the questions’ comprehensiveness and ability to describe the health condition. Respondent satisfaction as described by respondents in paper II includes being able to give correct and truthful information as well as reflection and new insights from the questions. Respondent burden includes experiences of being manipulated or controlled by the researcher as well as worry, anxiety or sadness caused by the questions. Experiences of satisfaction and burden differed depending on the respondents’ primary motive for participating in surveys. The findings of paper III illustrate that the use of lottery tickets as incentives to parents may be less valuable or even harmful as a means of increasing response rates. In paper IV a survey design inspired by Self-Determination Theory yielded higher satisfaction among respondents and improved response rates with similar or better data quality compared with a standard design.

Focusing on the respondents’ perspective provided important new knowledge. The results show a broad spectrum of positive as well as negative aspects of survey participation. The results support Self-Determination Theory as a useful theoretical framework for studying motivation in survey research and an interesting additional source to provide ideas on how to design surveys with the potential to motivate respondents. The results suggest that it is possible to improve response rates in a way that promotes data quality as well as positive experiences among the respondents.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2010. 95 p.
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 1193
National Category
Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:liu:diva-60183 (URN)978-91-7393-346-9 (ISBN)
Public defence
2010-10-22, Berzeliussalen, Campus US, Linköpings universitet, Linköping, 09:00 (English)
Opponent
Supervisors
Available from: 2010-10-07 Created: 2010-10-07 Last updated: 2013-10-09Bibliographically approved
2. Aspects of health-related quality of life: Associations with psychological and biological factors, and use as patient reported outcome in routine health care
Open this publication in new window or tab >>Aspects of health-related quality of life: Associations with psychological and biological factors, and use as patient reported outcome in routine health care
2012 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Background Health-related quality of life (HRQoL) is increasingly recognised as an important patient-reported outcome in health care research. However, the use is still restricted and several questions remain about the value and feasibility of using measures of HRQoL in routine health care. The general aims of the thesis were therefore to increase the understanding of these issues by studying 1) associations of HRQoL with psychological and biological factors, 2) comorbidity adjustments of HRQoL measurement results, and 3) the patient-perceived value and feasibility regarding the use of measures of HRQoL as patient-reported outcome in routine health care.

Methods Three different data sets were used; baseline data (questionnaire, anthropometric, and biological) from the ongoing Life conditions, Stress, and Health Study (n=1007, papers I and II), data from a population survey from the County Council of Östergötland in combination with data from two national Swedish registries, the National Inpatient Register and the Causes of Death Register (n=6086, paper III), and data (questionnaire) from the multicentre Swedish Health Promoting Hospitals Network Health outcome assessment project (n=463, paper IV). The HRQoL measures used were the SF-36 and the EQ-5D. Statistical methods include variance, correlation and regression analyses.

Results Psychological resources (Self-esteem, Sense of Coherence, and Perceived Control) as well as psychological risk factors (depressive mood) were found to relate independently to HRQoL (SF-36) in the expected directions (positive relations for resources and negative relations for risk factors), but with fewer sex differences than expected (Paper I). Low HRQoL (SF-36) was found to relate to higher levels of inflammatory biological factors (C-reactive protein, Interleukin-6, and MatrixMetalloProteinase-9), and, especially regarding Interleukin-6, many association remained significant, though attenuated, after adjustment for factors of known importance to HRQoL (age, sex, disease, lifestyle and psychological factors) (Paper II). A new comorbidity index, the Health-related Quality of Life Comorbidity Index (HRQL-CI), explicitly developed for use in HRQoL outcomes studies, showed higher explanatory power (higher R2 values) than the commonly used Charlson Comorbidity Index (CCI) regarding impact of comorbidity on HRQoL (SF-36 and EQ-5D). However, regarding mortality the CCI discriminated better between those who died within a year from answering the HRQoL questionnaires, died within ten years, or who were still alive after ten years. This result is in line with the CCI’s original purpose as a mortality predictor. Using morbidity data from mandatory, highly valid national health data bases was found to be useful in a large study of this kind, where using data from medical records might be impractical. (Paper III). Using measures of HRQoL as patient-reported outcome measures in routine health care was regarded as valuable by the majority of the patients in the Health outcome assessment project. A new concept was introduced, respondent satisfaction, and the respondent satisfaction summary score was in most cases equal, i.e. SF-36 and EQ-5D were found to be quite similar regarding the cognitive response process (understanding and responding to the items in the EQ-5D and the SF-36) and patient-perceived content validity (if EQ-5D and SF-36 gave patients the ability to describe their health in a comprehensive way) (Paper IV).

Conclusions The four papers investigated different aspects of HRQoL that are important for the implementation of the use of measures of HRQoL within the health care system. In conclusion, 1) the use of measures of HRQoL to identify patients with low HRQoL for further health promoting interventions might be supported on a psychological (psychological resources are related to better HRQoL) and biological basis (low HRQoL being an important sign of increased biological vulnerability), 2) a comorbidity index specifically aimed to adjust for comorbidity in patient HRQoL outcomes studies was found to be valid in a normal population (that might serve as a reference population in future studies), and 3) patients perceived the use of measures of HRQoL to be valuable and feasible in routine health care, and questionnaire length and ease of response were not found to be crucial arguments in the choice between SF-36 and EQ-5D. Hence, in their own way, they all and together, contribute to removing obstacles in the implementation process of using patient-reported outcome measures in the health care system for quality improvement.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2012. 80 p.
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 1295
National Category
Other Medical Sciences not elsewhere specified
Identifiers
urn:nbn:se:liu:diva-74758 (URN)978-91-7519-958-0 (ISBN)
Public defence
2012-03-16, K2, Kåkenhus, Campus Norrköping, Linköpings universitet, Norrköping, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2012-02-07 Created: 2012-02-07 Last updated: 2012-03-23Bibliographically approved

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Nilsson, EvalillBendtsen, PrebenKristenson, Margareta

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