SummaryA growing population of long-term survivors of myeloma is now accumulating the 'late effects' not only of myeloma itself, but also of several lines of treatment given throughout the course of the disease. It is thus important to recognise the cumulative burden of the disease and treatment-related toxicity in both the stable and active phases of myeloma, some of which is unlikely to be detected by routine monitoring. We summarise here the evidence for the key late effects in long-term survivors of myeloma, including physical and psychosocial consequences (in Parts 1 and 2 respectively), and recommend the use of late-effects screening protocols in detection and intervention. The early recognition of late effects and effective management strategies should lead to an improvement in the management of myeloma patients, although evidence in this area is currently limited and further research is warranted.Keywords: myeloma, late effects, quality of life, haematopoietic stem cell transplantation, chemotherapy.
MethodologyThese guidelines were developed using the following stages:• Review of key literature from 1 April 2006 to 31 March 2016 using the Cochrane database (search term: myeloma) and Medline: search terms used were [myeloma] + late effects, long term effects, frailty, geriatric assessment, infection, infection prophylaxis, vaccination, nutrition, exercise, rehabilitation, employment, endocrine, disability, late treatment consequences, cancer survivorship (for all papers); and psychological, fatigue, second primary malignancy, quality of life, infection (reviews). As organ-specific areas, such as renal and bone, have been covered in previous guidelines, searches were not re-performed.• Development of key recommendations based on randomised, controlled trial evidence. In the absence of randomised data, recommendations were developed on the basis of literature review and a consensus of expert opinion.• Updating of the levels of evidence and grades of recommendation using the GRADE (Grading of Recommendations Assessment, Development and Evaluation) nomenclature for assessing the quality of evidence and providing strength of recommendations (Appendix; http:// www.gradeworkinggroup.org/index.htm).• Review of the manuscript was performed by the British Society for Haematology (BSH) Guidelines Committee and Haemato-Oncology Task Force, and the BSH sounding board, comprised of 50 or more members of the BSH who have reviewed this Guidance and commented on its content and applicability in the UK setting, consistent with the primary target audience of UK-based multidisciplinary clinical teams treating myeloma and its complications. Involvement of patient perspectives was through Myeloma UK.• In preparing these guidelines, the authors have considered overall cost-effectiveness and budget impact of recommended interventions as well as clinical efficacy data and the burden/impact on patients. Formal health economic assessments have not been carried out.