MM accounts for 2% of all cancers and is the 2nd most common hematological malignancy (Bianchi and Anderson, 2014). Patients with MM are living longer than before resulting in it now being treated as a chronic disease rather than terminal illness. Chronic diseases are life changing for patients and increasingly patients with MM are left with long term symptoms as a result of treatment toxicities and side effects.
The specific aims of this study are: (1) Develop a tool that will enable both patients and HCPs to manage the symptoms of myeloma and other associated adverse events that arise with this diagnosis.
(2) To support relapsed MM patients to self manage their symptoms.
A descriptive qualitative methodology will be used and my aim is to carry out 4 focus groups nationally with patients diagnosed with relapsed MM. The focus groups will explore patients’ experiences of their symptoms management and how nurses can improve symptom management. As a result of the data collected, a symptom management tool will be developed for patients’ home utilization when experiencing symptoms or side effects. The tool will provide an algorithm for the most common symptoms experienced by patients with relapsed MM and guide patients in how to deal with them. There will also be a dedicated section on the tool for patients to describe their symptoms and present at their next clinical appointment. This will enable patients to become self efficient in their care management.
The group of relapsed MM patients who participated in the focus group will be invited to provide feedback on the tool via a questionnaire via telephone to ensure 100% response. If open ended questions are asked, same can be recorded. Their general viewpoint will be sought but also specifically on the practicality of the tool and its functionality. Furthermore, an expert group of haematology nurses (those attending the HAI Nursing Conference in October 2016) will be invited to participate in another survey monkey questionnaire and provide insight into the tool’s capabilities in improving patient outcomes. It is hoped that they will also provide insight on the long term feasibility of this tool.
