title: Response shift - The experience of disease progression in Parkinson disease.
abstract: To investigate response shift, the recalibration of perceived quality of life (QoL) relative to symptomatic changes in Parkinson disease (PD).
  
  
  
  Health-related QoL in PD is influenced by improvement vs. decline in disease severity. However, it is unclear how disease course changes internal standards of QoL over time.
  
  
  
  124 PD patients were subdivided based on Total UPDRS change over 1 year (stable, improved, declined). The EuroQol Visual Analog Scale assessed QoL at baseline (T1) and 1 year later (T2). At T2, patients rated current QoL (T2-current) and reappraised their T1 QoL (T2-retrospective). Recalibration response shifts were represented by the difference between T1 and T2-retrospective QoL ratings.
  
  
  
  At follow-up (T2), the total patient sample reported no difference between current (T2 current mean (M) = 76.3) and retrospective (T2-R M = 77.8) QoL ratings. While there was no significant difference between T1 (M = 79.2) and T2-R ratings 1 year later (M = 77.8) for the total sample, there was a change by group interaction (p < 0.005) which showed that retrospectively, decliners reduced ratings (M Δ = -9.0) and improvers increased ratings (M Δ = +6.4) while stable patients did not change.
  
  
  
  When PD patients consider their health status one year ago, decliners recalibrate and downgrade last year's health assessment, while improvers upgrade last year's assessment. Changes in internal calibrations cushion periods of decline or improvement in PD such that patients tend to "stabilize" their general disease course when recalling symptom trajectory, providing insight into the process of adaptation to the effects of disease progression and treatment over time.
authors.affiliation: Department of Neurology, University of Maryland School of Medicine, 110 South Paca Street, 3rd Floor, Baltimore, MD 21201, United States.
authors.forename: Jessica
authors.initials: J
authors.lastname: Yang
authors.affiliation: Department of Neurology, University of Maryland School of Medicine, 110 South Paca Street, 3rd Floor, Baltimore, MD 21201, United States.
authors.forename: Brenda
authors.initials: B
authors.lastname: Hanna-Pladdy
authors.affiliation: Department of Epidemiology and Public Health, University of Maryland School of Medicine, 660 West Redwood Street, Howard Hall Suite 200, Baltimore, MD 21201, United States.
authors.forename: Ann L
authors.initials: AL
authors.lastname: Gruber-Baldini
authors.affiliation: Department of Epidemiology and Public Health, University of Maryland School of Medicine, 660 West Redwood Street, Howard Hall Suite 200, Baltimore, MD 21201, United States.
authors.forename: Erik
authors.initials: E
authors.lastname: Barr
authors.affiliation: Department of Neurology, University of Maryland School of Medicine, 110 South Paca Street, 3rd Floor, Baltimore, MD 21201, United States.
authors.forename: Rainer
authors.initials: R
authors.lastname: von Coelln
authors.affiliation: Department of Neurology, University of Maryland School of Medicine, 110 South Paca Street, 3rd Floor, Baltimore, MD 21201, United States.
authors.forename: Melissa J
authors.initials: MJ
authors.lastname: Armstrong
authors.affiliation: Department of Neurology, University of Maryland School of Medicine, 110 South Paca Street, 3rd Floor, Baltimore, MD 21201, United States.
authors.forename: Stephen G
authors.initials: SG
authors.lastname: Reich
authors.affiliation: Department of Neurology, University of Maryland School of Medicine, 110 South Paca Street, 3rd Floor, Baltimore, MD 21201, United States. Electronic address: shulman@som.umaryland.edu.
authors.forename: Lisa M
authors.initials: LM
authors.lastname: Shulman
mesh_terms: D000368:Aged; D018450:Disease Progression; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D008297:Male; D008875:Middle Aged; D010300:Parkinson Disease / Q000175:diagnosis* / Q000523:psychology* / Q000628:therapy; D011788:Quality of Life / Q000523:psychology*; D012189:Retrospective Studies; D016896:Treatment Outcome
keywords: Parkinson's disease; Quality of life; Response shift