1. A qualitative descriptive study describing relapsed multiple myeloma patients’ experience of their care and the views of health care professionals in their current care management.” O Cormican & M Dowling Cancer Clinical Trials Department, Clinical Research Facility, Galway University Hospital, School of Nursing and Midwifery, NUIG, Galway.

2. Background  Multiple Myeloma is a chronic incurable cancer.  The obstacle now facing health care professionals is matching the progress made in prolonging life with maintaining a good quality of life (1).  The majority of their care takes place as an outpatient (2).  The present study hoped to identify whether the care needs of myeloma patients are being adequately addressed and explore both patient and HCPs’ perspectives about these care needs.

3. Methodology  Descriptive Qualitative Methodology  Patients with relapsed Multiple Myeloma participated in semi structured interviews with a set interview guide (N=8)  Health Care Professionals participated in Focus Groups Three individual focus groups were held (N=17)  Transcribed Verbatim  Thematic analysis  Ethical Approval was sought and approved by local ethics committee

4. Results  Five main themes emerged The patient as an expert The patient & healthcare professional decision making partnership The chronic disease trajector y Finding comfort The incurable disease and the role of palliative care

5.  Patients were seen as experts in their own illness trajectory.  Patients were seen as informed, knowledgeable and educated by nursing staff with staff often relying on patients expertise. “I find it reassuring that they are experts because a lot of the time I am taking leave from them.” (Staff Nurse, Participant 6, FG2)  Doctors recognised the need for patients to take on an autonomous role in their care.

6. The patient & health care professional decision making partnership  Doctors recognised a change from a paternalistic approach to medicine to a more patient decision making framework.  Despite this, patients place a huge amount of trust is in the physician. “I wouldn’t disagree with the bosses [doctors] they are looking after me and probably the reason why I am here today.” (Patient x 10 years diagnosed, N 2)  For patients running out of treatments a clinical trial was often considered but this meant that doctors often felt they had to justify giving further treatments to patients.  Nurses felt that relapsed multiple myeloma patients were greatly influenced by consultants in regards to decisions for further treatment.

7. The chronic disease trajectory  Perspectives regarding myeloma are now beginning to change.  Health care professionals recognise the need for change in order for myeloma to be recognised as a chronic illness.  For patients the greatest impact of a chronic disease is the effect it has on the ability to live a normal quality of life (3).  Patients often isolated themselves and believed that myeloma had changed them as a person. “I don't really go out much but even if you were out with company you wouldn’t be a s lively. You would talk alright but you wouldn’t be... It’s a setback. Any ailment is a setback, it’s a change in life. If you don’t have it you have no worries... You are always on edge.” (Patient diagnosed x 4 years, N 7)

8. Finding Comfort  Support was critical to the patient experience.  Experiences varied from extreme isolation and misunderstanding to the comfort received from health care professionals. “It’s only myself that knows and they [family] don’t understand.” (Patient diagnosed x 8 years, N 4)  Psycho oncology support was lacking and health care professionals often felt extreme failure for patients’ emotional wellbeing as well as feeling overwhelmed by situations.  Emotional support was less of a priority in the outpatient setting where many obstacles such as time and space are met.

9. The incurable disease and the role of palliative care  There is an overwhelming insistence from health care professionals that palliative care would be of great benefit if introduced following diagnosis. “We should try to involve palliative care as early as possible to create an opportunity to palliative care to take over trust and understanding with the patient because...my understanding at the moment is that in Ireland many patients think of palliative care as end of life rather then management of complications, side effects or other confinements.” (FG1, Participant 6)  Myeloma is seen as diverse and uncertain due to no set care plan being in place resulting in difficulties such as when was the most appropriate time to implement palliative care. “There is an awful lot of uncertainty around their care... It’s very individualised as well.” (FG2,particpant 5)  Patients are perceived as “fighters” and often nursing staff question when the line should be drawn on further treatment. “

10. Recommendations.  A self management programme may be of benefit in treating myeloma as a chronic illness, example: Lorig’s CCM model.  An emotional support network needs to be implemented in the clinical setting in order to ensure adequate comfort is provided to these patients, example: training programme for health care professionals, development of onsite psycho oncology support or creating support groups for patients.  A look at early referrals to palliative care and the impact it has on patients wellbeing may be necessary in order to improve quality of life.

11. Conclusion  Multiple Myeloma is now being viewed as a chronic incurable disease.  Patients are now taking on a more proactive role in decision making.  Ideals of treatment exist yet need to be implemented.  Greater input from palliative care and psycho oncology support is necessary in order to improve the quality of life of these patients.

12. References and Acknowledgements (1) Snowden,A, J., Ahmedzai, H, S., Ashcroft,J., D’Sa, S., Littlewood,T., Low, E., Lucraft,H., Maclean,R Feyler,S., Pratt, G and Bird, M, J (2011) "Guidelines for supportive care in multiple myeloma 2011." British Journal of Haematology; 154, 76–103 (2) Molassiotis, A., Wilson, B., Blair, S., Howe, T and Cavet, J. (2011) “Unmet supportive care needs, psychological well- being and quality of life in patients living with multiple myeloma and their partners.” Psycho-Oncology; 20: 88-97. (3) Hale, E.D., Treharne, J. and Kitas, G.D. (2007) ‘The common sense model of self-regulation of health and illness: how can we use it to understand and respond to patients needs?’, Rheumatology, 46, pp. 904-906.  Our sincere thanks to the patients, nurses and doctors who shared their views so openly with us.