Do haematological cancer patients get the information they need about their cancer and its treatment? Results of a cross-sectional survey.

PURPOSE

To explore the experiences of haematological cancer outpatients in obtaining information about their cancer and its treatment.

METHODS

A cross-sectional survey of adult haematological cancer outpatients was conducted. Participants completed two pen-and-paper questionnaires: the first examined demographics and disease characteristics; the second, completed four weeks later, asked about the cancer information received. Participants indicated whether they received the information they needed about medical procedures and self-management, experiences regarding doctor-patient communication, and self-efficacy in seeking information and support. Where possible, items were derived from Australian psychosocial cancer care guidelines.

RESULTS

Two hundred and ninety-three (84%) patients consented to participate, with 170 (58%) completing both questionnaires. Most participants reported receiving information in accordance with guidelines. Areas identified as requiring improvement included difficulty recalling information (28%); information overload (26%); insufficient opportunity to ask questions (23%); and insufficient information about managing anxiety related to medical procedures (20%).

CONCLUSION

While many haematological cancer patients report receiving adequate information, there is room for improvement. Implementation of evidence-based strategies, such as decision aids or audiotapes of the consultation, may help to improve information experiences.

PRACTICE IMPLICATIONS

A patient-centred approach to information provision is essential for ensuring information addresses the needs and preferences of the patient.