Optimal cancer care: what essential elements of care would help haematological cancer patients obtain and understand information about their disease and its treatment and impact?

PURPOSE: To describe the perceptions of haematological cancer patients about the components of care deemed essential to supporting them to obtain and understand information about their cancer, its treatment and its impact on their life. METHODS: A cross-sectional survey was conducted with individuals diagnosed with haematological cancer. Eligible patients presenting for a scheduled outpatient appointment were invited to complete a pen-and-paper survey in the clinic waiting room while waiting for their appointment. Those who completed the survey were mailed a second survey approximately 4 weeks later. Participants provided data about their demographic and disease characteristics and perceptions of optimal care for haematological cancer patients. RESULTS: A total of 170 patients completed both surveys and were included in the analysis. The items endorsed as essential components of care by the highest number of participants were being able to share accurate information about their disease, treatment and ongoing care with their GP/family doctor (49%); being able to obtain up-to-date information specific to their circumstances (43%); being able to obtain information in the amount of detail that they want (34%); being able to call a health care professional at the treatment centre where they are receiving care (34%) and being able to call an experienced health care professional who has knowledge of their disease and its treatment (34%). CONCLUSIONS: Further research is needed to determine ways of meeting the preferences of haematological cancer patients and determining the associated impact on patient outcomes.