Abstract
BackgroundImproving the coordination of cancer care is a priority area for service improvement. However, quality improvement initiatives are hindered by the lack of accurate and reliable measures of this aspect of cancer care. This study was conducted to develop a questionnaire to measures patients' experience of cancer care coordination and to assess the psychometric properties of this instrument.MethodsQuestionnaire items were developed on the basis of literature review and qualitative research involving focus groups and interviews with cancer patients, carers and clinicians. The draft instrument was completed 686 patients who had been recently treated for a newly diagnosed cancer, including patients from metropolitan, regional and rural areas of New South Wales, Australia. To assess test-retest reliability, 119 patients completed the questionnaire twice. Unreliable items those with limited variability or high levels of missing data were eliminated. Exploratory factor analysis was conducted to define the underlying factor structure of the remaining items and subscales were constructed. Correlations between these and global measures of the experience of care coordination and the quality of care were assessed.ResultsOf 40 items included in the draft questionnaire, 20 were eliminated due to poor test-retest reliability (n = 4), limited response distributions (n = 8), failure to load onto a factor (n = 7) or detrimental effect on the internal consistency of the scale (n = 1). The remaining 20 items loaded onto two factors named 'Communication' and 'Navigation', which explained 91% of the common variance. Internal consistency was with high for the instrument (Cronbach's alpha 0.88) and each subscale (Cronbach's alpha 0.87 and 0.73 respectively). There was no apparent 'floor' or 'ceiling' effect for the total score or the Communication subscale, but evidence of a ceiling effect for the Navigation subscale with 21% of respondents achieving the highest possible score. There were moderate positive associations between the total score and global measures of care coordination (r = 0.57) and quality of care (r = 0.53).ConclusionsThe instrument developed in this study demonstrated consistency and robust psychometric properties. It may provide a useful tool to measure patients' experience of cancer care coordination in future surveys and intervention studies.
Highlights
Improving the coordination of cancer care is a priority area for service improvement
Many national strategic cancer plans have identified the improvement of cancer care coordination as a priority for service improvement [1,4,6,7]
Efforts to improve cancer care coordination to date have been hindered by a dearth of accurate and reliable measures by which progress can be monitored
Summary
Improving the coordination of cancer care is a priority area for service improvement. Effective coordination of care between different clinicians, services and health sectors throughout the patient journey is fundamental to the provision of high-quality care [1,2,3]. In health systems where care is well coordinated, patients will experience effective flow of information between clinicians throughout the course of their illness, with streamlined service provision in response to their physical, emotional and social needs [4]. Efforts to improve cancer care coordination to date have been hindered by a dearth of accurate and reliable measures by which progress can be monitored. This partly stems from the lack of an agreed theoretical framework or definition of the term ‘care coordination’ to underpin the development of measures. The authors identified a number of common elements to inform the following working definition:
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