Perception of quality of care: comparison of the views of patients’ with lung cancer and their family members

Aims and objectives. To explore potential differences within dyads of patients’ with lung cancer and family members’ judgment of different aspects of quality of care and relationships between quality of care and personal and health‐related characteristics. Background. High quality of care is important for acceptable quality of life in patients in palliative care. If patients are unable to participate in quality of care assessments or decision‐making, family members might often act as proxies, despite the complicated nature of their own situation. Design. Cross‐sectional survey design. Method. A patient and family member version of the abbreviated questionnaire Quality from Patients’ Perspective, with additional items about perceived health and opinions about care, was mailed to members of the Swedish lung cancer Patient Organisation. Wilcoxon’s signed rank test was used to identify potential differences within 51 patient–family member dyads’ quality of care ratings. Relationships between Quality from Patients’ Perspective dimensions and demographic and health‐related variables were examined with Spearman’s correlations. Results. Patient–family member dyads had high levels of agreement in ratings of perceived reality of quality of care. Family members generally rated the subjective importance of individual items higher than did the patient in the dyad, with significant difference in the dimension ‘socio‐cultural approach’. Older patients were found to rate the physical–technical conditions higher than younger patients, in relation to perceived reality but not subjective importance. Women family members were found to rate the subjective importance of medical–technical competence, identity‐oriented approach and socio‐cultural approach significantly higher than men did. Conclusions. Patients with lung cancer and their family members agree in ratings of the perceived reality, but they differ more in ratings of the subjective importance of quality of care. When patients are unable to communicate their preferences, family members’ opinions could be used as proxies concerning concrete aspects of quality of care. Concerning more subjective aspects, family members’ ratings should be interpreted with precaution, as it could diverge from patients’ own opinion. Relevance to clinical practice. The perceptions of the importance of different aspects of quality of care were less related to health status than were judgments of quality of care received. This might suggest that the care patients received fulfilled neither the patients’ nor family members’ expectations, which is an important message to healthcare professionals and which would demand further exploration.