title: What Should Constitute a Health Related Quality of Life Scale for Parkinson's Disease?
abstract: BACKGROUND
  Health Related Quality of Life (HRQoL) in Parkinson's Disease (PD) lacks universally agreed definition and its components. A conceptual framework helps in understanding the essential domains and their inter-relationship while developing patient reported outcome measure.
  
  
  OBJECTIVE
  To construct a conceptual framework for developing HRQoL scale in PD.
  
  
  METHODS
  A panel of 7 experts extracted 6 major domains for measuring HRQoL in PD from literature review including 8 disease specific scales for PD, 2 books on quality of life, 5 websites, relevant articles; and content analysis of semi-structured interviews of stakeholders (28 persons with PD, 6 caregivers and 9 clinicians). Extracted domains were subjected to consensus of stakeholders (7 persons with PD, 7 caregivers and 7 clinicians) on 7 point Likert scale. The panel constructed a conceptual framework and a definition of HRQoL in PD in context of available guidelines for developing patient reported outcome measures.
  
  
  RESULTS
  The extracted domains were physical, non motor symptom, psychological, family/social, finance and treatment domains. Median of all six domains on 7 point Likert scale was 7 and inter-quartile distance was <1 in consensus agreement. The conceptual framework consisted of indicator domains and causal domains. Indicator domains (physical, psychological, and social and family) estimate the influence of causal domains (motor symptoms, non motor symptoms, finance and treatment) on quality of life. The definition emphasizes upon the person's perception of their symptoms and its impact on their lives.
  
  
  CONCLUSIONS
  This study defined and developed a conceptual framework for HRQoL scale for PD.
authors: Physiotherapist and In-Charge, Department of Neurology, AIIMS , New Delhi, India .
authors: Rajeev
authors: R
authors: Aggarwal
authors: Professor, Department of Neurology, AIIMS , New Delhi, India .
authors: Vinay
authors: V
authors: Goyal
authors: Professor and Head, Department of Biostatistics, AIIMS , New Delhi, India .
authors: Ravindra Mohan
authors: RM
authors: Pandey
authors: Additional Professor, Department of Psychiatry, AIIMS , New Delhi, India .
authors: Nand
authors: N
authors: Kumar
authors: Senior Consultant, Institute of Neurosciences, Medanta The Medcity , Gurgaon, Haryana, India .
authors: Sumit
authors: S
authors: Singh
authors: Professor, Department of Neurology, AIIMS , New Delhi, India .
authors: Garima
authors: G
authors: Shukla
authors: Professor and Head, Department of Neurology, Fortis Flt. Lt. Rajan Dhall Hospital , New Delhi, India .
authors: Madhuri
authors: M
authors: Behari
keywords: Causal domain; Conceptual framework; Indicator domain; Outcome measure