The quality of patient-centred care: haematological cancer survivors' perceptions

Objective: Patient-reported outcome measures (PROMs) that assess the quality of patient-centred cancer care have failed to measure all six patient-centredness dimensions endorsed by the Institute of Medicine (IOM). This study is the first to use the Quality of Patient-Centered Cancer Care (QPCCC) measure that covers all six IOM patient-centredness dimensions to examine haematological cancer survivors' perceptions of care and characteristics associated with perceived quality of care. Methods: Haematological cancer survivors diagnosed in the last 6 years and aged 18-80 years were recruited from two Australian state population-based cancer registries. Survivors were mailed the 48-item QPCCC measure. Results: Overall, 545 haematological cancer survivors completed the measure. Areas of care most commonly identified as delivered were hospital staff showing respect to survivors (93%) and making sure the correct treatment was received (93%). Aspects of care most frequently nominated as not delivered were hospital staff helping family and friends (34%) or the survivor (32%) to find other people with similar experiences to talk to. Characteristics associated with survivors perceiving higher quality care was delivered included being employed, having private health insurance, being younger, a Non-Hodgkin lymphoma diagnosis and more recent diagnosis. Being depressed or stressed was associated with perceived lower quality of care. Conclusions: Provision of peer support programs that allow haematological cancer survivors and families and friends to talk to others in similar situations could be improved. Using PROMs to identify areas where cancer survivors perceive improvements are needed is essential to quality improvement efforts.