Information provision

One of the most important roles of the nursing and supportive care teams in caring for patients and their families is to provide them with information and support to help them understand and live with a diagnosis of myeloma.

Information empowers patients and their families with knowledge about myeloma, its treatment, symptoms and side effects. It allows patients to make informed decisions about their treatment and care and to feel a sense of control and increased confidence, which can help make appointments with the team more valuable for all. As myeloma is a cancer that is increasingly treated over many years, patient choice and knowledge of the treatment pathway is beneficial for everyone involved. It should also be recognised however that there are patients who prefer not to carry the load of too much information and prefer to keep knowledge to a minimum, and this should be respected.

Getting the right type of information at the right time is an important consideration for those involved in supporting patients and their families. Sensitivity is required to avoid overwhelming patients with information at diagnosis. Generally, the key stages for information and support needs are associated with:

• Diagnosis
• When treatment decisions are required
• When starting new treatments
• Relapse
• When bad news is given e.g. when patients are not responding to treatment
• When certain (e.g. invasive) diagnostic procedures are required
• During treatment-free periods or periods of remission
• Advanced disease and end of life care

What might be suitable for one person may not be suitable for another. It is useful to find out what patients already know and what information they have been given or have obtained for themselves. Information should be given in a manner that patients can understand and is culturally sensitive. The needs of patients whose first language is not English should be recognised and where available specialist resources and/or interpreters should be provided. The nurse and team should also be sensitive to the patient’s needs around gender, other illnesses, disabilities, and sexuality.

Nursing and supportive care team(s) are those most involved in information provision. The main points to consider are:

• Offer patients as much information about myeloma and its treatments as they wish, in the format they find the easiest to understand, inclusive and sensitive to their specific needs, and in a language they are likely to understand. Also be aware that not all patients wish to obtain information.
• Be available to answer questions or concerns patients and their families may have. Provide them with a contact number and/or the opportunity for follow-up telephone call/meetings.
• Repeat information several times if necessary: myeloma is a complex cancer and it may be difficult for patients and families to understand the different aspects of the disease and treatment options.
• Be aware that patients are more likely to retain incremental information and this should always be considered when providing patient information. Providing accurate, high-quality written information to back up face-to-face verbal communication can help.
• Ensure that patients and families are not overwhelmed with complex medical jargon that they are unlikely to understand as this may increase anxiety.
• Acknowledge that the information needs of families and carers are often different from those of patients but equally important.
• Encourage patients to keep a diary or journal to make a note of how they are feeling at different times, especially whilst on treatment. Some patients may find it useful to keep a record of their test results and to track important information related to their myeloma, writing down questions they may think of between appointments.
• Be aware of local support groups for those who find group discussions and talking to others who have been through similar, helpful.