title: Preference-based disease-specific health-related quality of life instrument for glaucoma: a mixed methods study protocol.
abstract: A primary objective of healthcare services is to improve patients' health and health-related quality of life (HRQoL). Glaucoma, which affects a substantial proportion of the world population, has a significant detrimental impact on HRQoL. Although there are a number of glaucoma-specific questionnaires to measure HRQoL, none is preference-based which prevent them from being used in health economic evaluation. The proposed study is aimed to develop a preference-based instrument that is capable of capturing important effects specific to glaucoma and treatments on HRQoL and is scored based on the patients' preferences.
  
  
  
  A sequential, exploratory mixed methods design will be used to guide the development and evaluation of the HRQoL instrument. The study consists of several stages to be implemented sequentially: item identification, item selection, validation and valuation. The instrument items will be identified and selected through a literature review and the conduct of a qualitative study. Validation will be conducted to establish psychometric properties of the instrument followed by a valuation exercise to derive utility scores for the health states described.
  
  
  
  This study has been approved by the Trillium Health Partners Research Ethics Board (ID number 753). All personal information will be de-identified with the identification code kept in a secured location including the rest of the study data. Only qualified and study-related personnel will be allowed to access the data. The results of the study will be distributed widely through peer-reviewed journals, conferences and internal meetings.
authors.affiliation: Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, Ontario, Canada.
authors.forename: Sergei
authors.initials: S
authors.lastname: Muratov
authors.affiliation: Department of Ophthalmology and Vision Sciences, University of Toronto, Toronto, Ontario, Canada.
authors.forename: Dominik W
authors.initials: DW
authors.lastname: Podbielski
authors.affiliation: School of Nursing, McMaster University, Hamilton, Ontario, Canada.
authors.forename: Susan M
authors.initials: SM
authors.lastname: Jack
authors.affiliation: Department of Ophthalmology and Vision Sciences, University of Toronto, Toronto, Ontario, Canada.|Trillium Health Partners, Mississauga, Ontario, Canada.
authors.forename: Iqbal Ike K
authors.initials: II
authors.lastname: Ahmed
authors.affiliation: Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, Ontario, Canada.
authors.forename: Levine A H
authors.initials: LA
authors.lastname: Mitchell
authors.affiliation: Department of Ophthalmology and Vision Sciences, University of Toronto, Toronto, Ontario, Canada.
authors.forename: Monika
authors.initials: M
authors.lastname: Baltaziak
authors.affiliation: Department of Clinical Epidemiology and Biostatistics, McMaster University, Research Institute of St Joseph's Hamilton, and Program for Health Economics and Outcome Measures, Hamilton, Ontario, Canada.
authors.forename: Feng
authors.initials: F
authors.lastname: Xie
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D015444:Exercise; D005260:Female; D005901:Glaucoma / Q000523:psychology* / Q000628:therapy*; D006801:Humans; D008297:Male; D008875:Middle Aged; D057240:Patient Preference; D011594:Psychometrics / Q000379:methods*; D036301:Qualitative Research; D011788:Quality of Life; D012107:Research Design; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: QUALITATIVE RESEARCH