Guidelines on the Diagnosis and Management of Multiple Myeloma
10. Patient Information and Support
Provision of information and support for patients and their carers is essential to assist patients in making informed choices on treatment options, as well as understanding the importance of compliance with treatment regimens which, at times, can be very demanding.
It is important for patients and their families to understand that, although treatment is not curative, it will relieve symptoms and prolong survival and its quality; the positive aspects of treatment need to be stressed. Patients with myeloma should be aware of support networks in the community; the specialist team should be able to provide patients and their families with information on local support networks, whether these are specific to myeloma or in relation to cancer generally.
The specialist team also needs to have information available for the patient and family on State benefits, e.g. Disability Living Allowance and Attendance Allowance. Bone problems may result in long term disability and preclude many patients returning to work. High dose and conventional chemotherapy regimens also make employment impractical for periods of several months. Patients commonly need advice therefore on socio-economic problems, which result from the condition and its treatment.
Key recommendations
- The diagnosis needs to be communicated honestly to the patient with the minimum of delay. Uncertainty about the condition is generally more distressing to a patient and his or her family. The information should be communicated in a quiet area with privacy, ideally in the company of a close relative and with the presence of a specialist nurse
- Patients and their partners/carers should be given time to ask appropriate questions once they have been given the diagnosis; this may be best be done after an interval of a few hours or days
- At the end of a consultation it is recommended that patients and their family/carers have written information, which provides information on the condition. It should also guide patients and their family/carers on access to information services. CancerBACUP, Myeloma UK and the Leukaemia Research Fund produce useful, patient-orientated booklets on the condition and its treatment
- Patients need to be informed of the names of the key members of the specialist team who are in charge of their care and given clear information on access to advice/support from the team
- The management plan needs to be communicated simply to the patient and his/her carer and should be clearly written in the case record so that the information is readily accessible to other members of the multi-disciplinary specialist team
- Patients and their families should be cautioned about the amount of unregulated information accessible on the Internet; they should be given recommendations on appropriate sites. An appropriately trained person, normally a specialist nurse, should be available to discuss/inform patients on information materials including guidance for using the Internet as an information source
- Patients should be given the opportunity of receiving more than one medical opinion.
Useful information sources
Myeloma UK provides information and support to all those affected by myeloma and aims to improve treatment and care through education, research, campaigning and awareness..
CancerBACUP is a UK based support organisation for patients with all types of cancer. They produce a range of disease specific patient-orientated information as well as excellent information on specific symptoms and other aspects of living with cancer. A help line will deal with patient and family enquiries on 0808 800 1234.
The Leukaemia Research Fund (LRF) supports research in myeloma and also provides patient information booklets. For further information telephone 020 7405 0101.