Orlaith Cormican1, Maura Dowling2. 1. The Cancer Clinical Trials Unit, Room 1.68, Clinical Research Facility, National University of Ireland Galway, Galway University Hospital, Newcastle Rd., Galway, Ireland. Electronic address: Orlaith.Cormican@hse.ie. 2. School of Nursing and Midwifery, National University of Ireland, Galway, University Road, Galway, Ireland. Electronic address: Maura.dowling@nuigalway.ie.
Abstract
PURPOSE: The study aim was to explore whether there were differing opinions on the current management of relapsed myeloma between patients and health care professionals, a topic which has never been explored previously in the literature. METHODS: This qualitative study was undertaken at a regional specialist haematology centre in Ireland. Individual interviews were undertaken with multiple myeloma patients with relapsed disease (n = 8). Three focus groups were also undertaken with haematology nurse specialists, haematology doctors and staff nurses working in a haematology day unit (n = 17). The analysis of interview data was guided by thematic analysis. RESULTS: Two central themes were interpreted from the interview data: 'shared decision making with the expert patient' and 'an unpredictable disease journey'. Patients felt well informed regarding their illness but faced difficult decisions at times. Nurses and doctors stressed the importance of the early introduction of palliative care but acknowledged difficulties due to myeloma being unpredictable. CONCLUSION: Managing relapsed myeloma was fraught with complex issues. Patients developed alternative ways of coping with their disease including adopting the role of the 'expert patient', continuing to battle their disease and living with a chronic illness. Health care professionals struggle to manage the realities of a disease where the prognosis is improving. Uncertainty around patients' care and difficulties such as when 'enough is enough', continue to cause challenges. The transition to a chronic disease offers hope to patients and an opportunity for health care professionals to implement holistic care plans encouraging patients to be self proactive.
PURPOSE: The study aim was to explore whether there were differing opinions on the current management of relapsed myeloma between patients and health care professionals, a topic which has never been explored previously in the literature. METHODS: This qualitative study was undertaken at a regional specialist haematology centre in Ireland. Individual interviews were undertaken with multiple myelomapatients with relapsed disease (n = 8). Three focus groups were also undertaken with haematology nurse specialists, haematology doctors and staff nurses working in a haematology day unit (n = 17). The analysis of interview data was guided by thematic analysis. RESULTS: Two central themes were interpreted from the interview data: 'shared decision making with the expert patient' and 'an unpredictable disease journey'. Patients felt well informed regarding their illness but faced difficult decisions at times. Nurses and doctors stressed the importance of the early introduction of palliative care but acknowledged difficulties due to myeloma being unpredictable. CONCLUSION: Managing relapsed myeloma was fraught with complex issues. Patients developed alternative ways of coping with their disease including adopting the role of the 'expert patient', continuing to battle their disease and living with a chronic illness. Health care professionals struggle to manage the realities of a disease where the prognosis is improving. Uncertainty around patients' care and difficulties such as when 'enough is enough', continue to cause challenges. The transition to a chronic disease offers hope to patients and an opportunity for health care professionals to implement holistic care plans encouraging patients to be self proactive.