Assessing information needs

It is important to consider the following factors, to help ensure that the right information is delivered, in the right format, at the right time:

• Age. Older people tend to rely most heavily on their family and GP for support. Younger patients have different needs; their treatment options are different (including allogeneic transplant options); their family circumstances may be different and those in their 30s and 40s may have difficulty finding patients of a similar age to speak to
• Stage. Myeloma is a cancer characterised by various stages of remission and relapse. The need and desire for information will continue to change for each patient, depending on the stage of their myeloma and current treatment options. The need for ongoing reassessment of information needs is therefore great
• Previous information. It is important to appreciate what information the patient already has, and whether they have sought information from external organisations, the internet, their GP, etc.
• Amount of information required, relevance and how appropriate it is, must be carefully considered
• Holistic information needs. Information needs other than diagnosis and treatment, including support groups and other psychosocial elements are important
• Format. Options include small written pamphlets and leaflets, written information guides, online animations, oral discussions between patient and HCPs, speaking to other patients and families in similar situations, and attending Patient and Family Myeloma Infodays
• Hard to reach groups. Bear in mind your patients’ first language may not be English, that they may have a learning disability or they may have visual or hearing impairments