• Cen Lin, Emma Cohen, Patricia M Livingston, Mohammadreza Mohebbi, and Mari Botti.
• School of Nursing, Fudan University, Shanghai, China, lincen@fudan.edu.cn.
• Patient Prefer Adher. 2019 Jan 1; 13: 83-90.

PurposeThe subjectivity of symptom experience and the recognized role of patients in symptom management highlight the need to understand cancer patients' participation in symptom management and to identify the associations between patient participation and quality of care. However, research on patient participation has focused mostly on general healthcare activities, rather than symptom management, especially in cancer-care settings. This study aimed to compare the congruence between cancer patients' preference for and actual perceived experience of participation in symptom management and identify the relationships between preferred and actual patient participation and perceived quality of care.MethodsThis was a cross-sectional study. Patient preference and actual experience of participation in symptom management were evaluated with the modified Control Preference Scale among patients recruited from a specialized cancer hospital in China. Patients' perception of quality of care was assessed with the short-form Quality from the Patient's Perspective questionnaire.ResultsA total of 162 patients were recruited. Their mean age was 47.5±12.2 years, and 51.9% were females. Patients' perceived actual level of participation in symptom management substantially agreed with their preference (weighted κ-coefficient 0.61, 95% CI 0.45-0.77). There was no significant difference between patients' perception of care quality and level of preference for participation (F=0.35, P=0.722) or actual experience of participation (F=0.76, P=0.519). Higher perceptions of quality of care were found among patients whose preferred roles were achieved (P=0.007) or surpassed (P=0.045).ConclusionThis study identified substantial agreement between patients' preferred and actual participation, given the generally passive preference. The findings indicated that supporting patients to achieve their preferred level of participation may be more important than focusing activities on encouraging increased desire to participate for the purpose of care-quality improvement.

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