title: Patient preferences for clinical follow-up after primary treatment for soft tissue sarcoma: a cross-sectional survey and discrete choice experiment.
abstract: BACKGROUND
  Patients treated for soft tissue sarcoma (STS) require long-term follow-up to detect recurrent or metastatic disease, yet marked differences exist in clinical approaches to the length of follow-up, frequency of consultations and investigations undertaken at follow-up visits. There has been no published work assessing patient expectations or the acceptability of post-treatment follow-up strategies. This study aimed to assess the patient acceptability of different follow-up strategies following curative surgery for soft tissue sarcoma and to investigate the hypothetical levels of recurrence risk at which different follow-up regimes were acceptable.
  
  
  METHODS
  Patients were recruited from the Royal Orthopaedic Hospital in Birmingham. The study used a cross-sectional survey incorporating a best-worst scaling discrete choice experiment to assess patient preferences regarding different aspects of follow-up.
  
  
  RESULTS
  132 patients participated (47% response). The nature of investigations undertaken during follow-up was the most important aspect of post-surgical care. Patients typically preferred appointments routinely consisting of clinical examination and chest X-ray, and for follow-up to remain in secondary care rather than general practice.
  
  
  CONCLUSIONS
  Clear protocols for STS patient follow-up can improve consistency and equity of care. In determining the optimum follow-up plan for STS patients from the patient perspective, this study provides valuable information that should be considered alongside the clinical effectiveness of follow-up strategies to maximise patient outcomes and use NHS resources appropriately.
authors.affiliation: Primary Care Clinical Sciences, School of Health and Population Sciences, University of Birmingham, Edgbaston, West Midlands B15 2TT, United Kingdom. Electronic address: s.l.damery@bham.ac.uk.
authors.forename: S
authors.initials: S
authors.lastname: Damery
authors.affiliation: Cancer Research UK Clinical Trials Unit and MRC Midland Hub for Trials Methodology Research, University of Birmingham, Edgbaston, West Midlands B15 2TT, United Kingdom. Electronic address: m.biswas@bristol.ac.uk.
authors.forename: M
authors.initials: M
authors.lastname: Biswas
authors.affiliation: Cancer Research UK Clinical Trials Unit and MRC Midland Hub for Trials Methodology Research, University of Birmingham, Edgbaston, West Midlands B15 2TT, United Kingdom. Electronic address: l.j.billingham@bham.ac.uk.
authors.forename: L
authors.initials: L
authors.lastname: Billingham
authors.affiliation: Health Economics Unit, School of Health and Population Sciences, University of Birmingham, Edgbaston, West Midlands B15 2TT, United Kingdom. Electronic address: p.m.barton@bham.ac.uk.
authors.forename: P
authors.initials: P
authors.lastname: Barton
authors.affiliation: Health Economics Unit, School of Health and Population Sciences, University of Birmingham, Edgbaston, West Midlands B15 2TT, United Kingdom. Electronic address: h.aljanabi@bham.ac.uk.
authors.forename: H
authors.initials: H
authors.lastname: Al-Janabi
authors.affiliation: Royal Orthopaedic Hospital NHS Foundation Trust, Bristol Road South, Northfield, Birmingham B31 2AP, United Kingdom. Electronic address: Robert.grimer@nhs.net.
authors.forename: R
authors.initials: R
authors.lastname: Grimer
mesh_terms: D000328:Adult; D000368:Aged; D001071:Appointments and Schedules; D002755:Choice Behavior; D003430:Cross-Sectional Studies; D004739:England / Q000453:epidemiology; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D008297:Male; D008875:Middle Aged; D060787:Neoplasm Grading; D009364:Neoplasm Recurrence, Local / Q000517:prevention & control*; D009819:Office Visits / Q000706:statistics & numerical data; D010342:Patient Acceptance of Health Care / Q000706:statistics & numerical data*; D057240:Patient Preference / Q000706:statistics & numerical data; D017060:Patient Satisfaction; D012509:Sarcoma / Q000473:pathology / Q000517:prevention & control* / Q000628:therapy; D013997:Time Factors
keywords: Best-worst scaling; Discrete choice experiment; Follow-up; Secondary care; Soft tissue sarcoma