title: Living with advanced but stable multiple myeloma: a study of the symptom burden and cumulative effects of disease and intensive (hematopoietic stem cell transplant-based) treatment on health-related quality of life.
abstract: BACKGROUND
  The cumulative impact of disease and treatment-related factors on health-related quality of life (HRQoL) in long-term survivors of multiple myeloma is poorly characterized.
  
  
  OBJECTIVE
  To characterize HRQoL and symptom burden in advanced, intensively treated myeloma.
  
  
  METHODS
  We performed detailed assessments in patients who had undergone hematopoietic stem cell transplantation and subsequent treatment for at least one episode of progressive disease. To exclude the impact of active disease and acute toxicity of treatment, patients were in a stable plateau phase. Patients were assessed for HRQoL (Short Form-12, European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30, and Multiple Myeloma Module), pain (Brief Pain Inventory-Short Form), peripheral neuropathy (self-report Leeds Assessment of Neuropathic Symptoms and Signs), and concerns (adapted from Profile of Concerns). Serum interleukin-6 and tumor necrosis factor-alpha were measured.
  
  
  RESULTS
  A total of 32 patients were enrolled, with a median age of 55 years at diagnosis and 60 years at assessment. After a median 5.5 years from diagnosis and three lines of treatment, physical functioning was significantly compromised (P<0.001) and associated with progressive work disability and concerns regarding loss of independence. Fatigue and pain were the predominant symptoms, impacting negatively on physical functioning (P<0.001). Pain was predominantly neuropathic in half the patients. Serum interleukin-6 levels positively correlated with pain (P=0.03), pain interference (P=0.003), insomnia (P=0.02), and appetite loss (P=0.02), and inversely correlated with physical functioning (P=0.03).
  
  
  CONCLUSIONS
  Despite disease control and supportive care, intensively treated long-term myeloma survivors have significantly compromised HRQoL related to symptom burden. Systematic assessment is routinely indicated in advanced phase myeloma, even when disease activity is stable. Further studies should investigate the utility of interventional strategies and the relationship of cytokines with symptoms.
authors.affiliation: Academic Unit of Supportive Care, University of Sheffield, Sheffield, United Kingdom. Electronic address: elaine.boland@nhs.net.
authors.forename: Elaine
authors.initials: E
authors.lastname: Boland
authors.forename: Christine
authors.initials: C
authors.lastname: Eiser
authors.forename: Yousef
authors.initials: Y
authors.lastname: Ezaydi
authors.forename: Diana M
authors.initials: DM
authors.lastname: Greenfield
authors.forename: Sam H
authors.initials: SH
authors.lastname: Ahmedzai
authors.forename: John A
authors.initials: JA
authors.lastname: Snowden
mesh_terms: D000328:Adult; D000368:Aged; D015897:Comorbidity; D005260:Female; D018380:Hematopoietic Stem Cell Transplantation / Q000523:psychology* / Q000706:statistics & numerical data; D006801:Humans; D015994:Incidence; D008297:Male; D008875:Middle Aged; D009101:Multiple Myeloma / Q000453:epidemiology / Q000523:psychology / Q000601:surgery; D009437:Neuralgia / Q000401:mortality* / Q000523:psychology*; D015995:Prevalence; D011788:Quality of Life; D012307:Risk Factors; D015996:Survival Rate; D017741:Survivors; D063189:Symptom Assessment / Q000706:statistics & numerical data; D006113:United Kingdom / Q000453:epidemiology
keywords: Multiple myeloma; fatigue; late effects; neuropathy; pain; psychosocial; quality of life; symptom burden