title: Continued participation in a ten-year tight control treat-to-target study in rheumatoid arthritis: why keep patients doing their best?
abstract: OBJECTIVE
  To identify risk factors for early study termination and motivators for adherence to a long-term followup trial and to improve completeness of long-term studies.
  
  
  METHODS
  Risk factors for early termination in 508 included patients were identified through Cox regression analysis. Patients completing the 10-year followup filled in a questionnaire on possible motives for continued study participation.
  
  
  RESULTS
  Risk factors for early termination were higher age (hazard ratio [HR] 1.03, 95% confidence interval [95% CI] 1.02-1.04), functional disability during the preceding year (HR 1.54, 95% CI 1.20-1.99), having achieved drug-free remission (HR 6.62, 95% CI 2.07-21.14), limited joint damage (HR 0.98, 95% CI 0.97-0.995 for actual damage; HR 0.83, 95% CI 0.73-0.94 for damage progression), and few adverse events (HR 0.35, 95% CI 0.26-0.47). A total of 288 of 313 patients (92%) attending the last visit answered the questionnaire. The majority mentioned contributing to scientific research (97% agreed), helping other patients (91%), and learning about new treatment strategies (84%) and their disease (85%) as reasons to continue participation. Next, patients mentioned tight control (202 of 278 patients), good treatment strategy (128 of 278), good medication (117 of 278), and good half-term results (102 of 278) as motivators. More than 95% of patients experienced participation "as expected" or "better than expected." Additional examinations during yearly visits (extra questionnaires, imaging) were mentioned as "worse than expected" (10%), as was answering routine questionnaires (7%).
  
  
  CONCLUSIONS
  Continued participation was relatively high in the Treatment Strategies for Rheumatoid Arthritis (BeSt) Study. Higher age, functional disability, drug-free remission, little joint damage, and few adverse events predicted early study termination. Main motives for continued participation were a willingness to contribute to research, help future patients, and because patients had good experiences with the study protocol.
authors.affiliation: Leiden University Medical Center, Leiden, The Netherlands.
authors.forename: Iris M
authors.initials: IM
authors.lastname: Markusse
authors.affiliation: Leiden University Medical Center, Leiden, The Netherlands.
authors.forename: Linda
authors.initials: L
authors.lastname: Dirven
authors.affiliation: Maasstad Hospital, Rotterdam, The Netherlands.
authors.forename: K Huub
authors.initials: KH
authors.lastname: Han
authors.affiliation: Haga Hospital, The Hague, The Netherlands.
authors.forename: H Karel
authors.initials: HK
authors.lastname: Ronday
authors.affiliation: Reade, Amsterdam, The Netherlands.
authors.forename: Pit J S M
authors.initials: PJ
authors.lastname: Kerstens
authors.affiliation: Reade and VU Medical Center, Amsterdam, The Netherlands.
authors.forename: Willem F
authors.initials: WF
authors.lastname: Lems
authors.affiliation: Leiden University Medical Center, Leiden, The Netherlands.
authors.forename: Tom W J
authors.initials: TW
authors.lastname: Huizinga
authors.affiliation: Leiden University Medical Center, Leiden, The Netherlands.
authors.forename: Cornelia F
authors.initials: CF
authors.lastname: Allaart
mesh_terms: D000367:Age Factors; D000368:Aged; D000369:Aged, 80 and over; D018501:Antirheumatic Agents / Q000009:adverse effects / Q000627:therapeutic use*; D001172:Arthritis, Rheumatoid / Q000175:diagnosis / Q000188:drug therapy* / Q000523:psychology; D004185:Disability Evaluation; D018450:Disease Progression; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D055118:Medication Adherence; D008875:Middle Aged; D009042:Motivation; D009426:Netherlands; D010352:Patient Dropouts; D010361:Patients / Q000523:psychology*; D016016:Proportional Hazards Models; D012074:Remission Induction; D012307:Risk Factors; D012720:Severity of Illness Index; D016037:Single-Blind Method; D011795:Surveys and Questionnaires; D013997:Time Factors; D016896:Treatment Outcome
chemical_list: D018501:Antirheumatic Agents