Myeloma UK awards two research grantsMyeloma UK has awarded two research grants for projects to be carried out at the University of Surrey and the London-based National Amyloidosis Centre, as part of its commitment to funding research to improve the care, treatment and quality of life of patients living with myeloma and its related disorders. Title of research study Information and self management of oral chemotherapy for myeloma Study lead: Dr Anne Arber, University of Surrey Grant award: £30,000 Start date: April 2009 Duration of grant: 18 months Background to this research Oral treatment is often now prescribed as initial therapy for patients with newly diagnosed myeloma. This has resulted in an increasing number of patients managing their own treatment regimens at home. However, oral treatment approaches have implications for both patients and the healthcare professional in charge of their care. Patients need to understand how to comply with their treatment regime and when to report problems and complications such as side-effects. It is vitally important that patients receive appropriate information and support to equip them with the knowledge to recognise side-effects and to know how, when and who to make appropriate contact with from their medical team. Information provision to patients is central to effective self-management of oral treatment in myeloma. How this information is provided - and in what form - by the healthcare professional is the focus of this study. Research overview The aim of this 18 month study is to understand how healthcare professionals, in particular clinical nurse specialists (CNSs), communicate and deliver information to myeloma patients undergoing their first course of oral chemotherapy, and to explore how confident patients feel in self-managing oral chemotherapy at home. Data will be collected from patients through a survey that will ascertain their knowledge and confidence in the self-management of oral chemotherapy. Data will also be collected through interviews with healthcare professionals and through observations of information-giving sessions with patients. The study will also have a focus on family members and carers who may be responsible for coordinating a patient’s treatment regime. The value of this research The study will provide valuable information about how CNSs and other healthcare professionals communicate and provide information to patients, and provide feedback on the tools they use to do this. Results from this research will also highlight any problematic areas related to patient understanding and safe self-management of chemotherapy, and will produce evidence to inform the development of good practice guidelines for information-giving practices. It will also give an insight into how patients, their families and carers feel about receiving treatment at home. Title of research study A study of AL amyloidosis chemotherapy using intensive shared-care monitoring Study lead: Dr Ashutosh Wechalekar, National Amyloidosis Centre Grant award: £70,000 Start date: May 2009 Duration of grant: 2 years Background to this research AL amyloidosis is a rare and serious plasma cell disease, closely related to myeloma. All available treatments are based on those used in myeloma but side-effects and complications are much more common and severe in AL amyloidosis. The tolerability and toxicity of different chemotherapy treatment has not yet been widely studied in AL amyloidosis. This research study will for the first time closely monitor patients’ chemotherapy treatment and collect extensive data over a three year period on responses and side-effects in a broad AL amyloidosis patient population. Research overview Hoping to recruit over 500 patients over three years, this will be the largest ever study of its kind in AL amyloidosis. This study aims to intensively monitor responses, tolerability and side-effects to all types of chemotherapy treatment being given to AL amyloidosis patients who have been assessed at the National Amyloidosis Centre (NAC). The study will also assess patients’ quality of life before, during and after chemotherapy. The information will be acquired by a specialist nurse at the NAC, substantially through the use of questionnaires and through frequent telephone discussion with doctors and patients at treating hospitals around the country. This information will be fed back to the doctors at these hospitals around the UK essentially creating a new national amyloidosis network. Myeloma UK has agreed to fund the first two years of this study. The value of this research Through the development of a new and novel model for monitoring treatment responses in AL amyloidosis, the top line value of this research is the potential for improvement to patient care. By establishing a national amyloidosis network, healthcare professionals will benefit from shared information about the best way to treat patients with this serious disease and patients across the UK should benefit from more informed treatment decisions. Shared information between the NAC and local haematology treatment centres will allow doctors to act at the earliest possible stage on reported treatment responses, e.g. modifying doses to reduce side-effects and discontinuing treatment when appropriate, all of which will contribute to improved outcomes for patients. The results from the study will help to inform changes to current clinical practice and complements the ongoing efforts of Myeloma UK to improve the standards of treatment and care for patients with AL amyloidosis. Summary The outcomes of both of these research projects will help shape the manner in which the treatment and care of people affected by myeloma and AL amyloidosis will be organised and delivered in the future. These grants have been funded as part of the Myeloma UK innovative ‘bench to bedside research programme’, which includes studying the genetics of myeloma and developing new drugs. This research has been made possible through the generous support of our supporters, fundraisers and donors. Page updated 10 March 2009
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