title: The impact of diabetic retinopathy on quality of life: qualitative findings from an item bank development project.
abstract: OBJECTIVE
  Assessing the efficacy of treatment modalities for diabetic retinopathy (DR) from the patient's perspective is restricted due to a lack of a comprehensive patient-reported outcome measure. We are developing a DR-specific quality of life (QoL) item bank, and we report here on the qualitative results from the first phase of this project.
  
  
  METHODS
  Eight focus groups and 18 semi-structured interviews were conducted with 57 patients with DR. The sessions were transcribed verbatim and iteratively analysed using the constant comparative method and NVIVO software.
  
  
  RESULTS
  Participants had a median age of 58 years (range 27-83 years). Twenty-seven (47%) participants had proliferative DR in the better eye, and 14 (25%) had clinically significant macular oedema. Nine QoL domains were identified, namely visual symptoms, ocular surface symptoms, vision-related activity limitation, mobility, emotional well-being, health concerns, convenience, social, and economic. Participants described many vision-related activity limitations, particularly under challenging lighting conditions; however, socioemotional issues were equally important. Participants felt frustrated due to their visual restrictions, concerned about further vision loss and had difficulty coping with this uncertainty. Restrictions on driving were pervasive, affecting transport, social life, relationships, responsibilities, work and independence.
  
  
  CONCLUSIONS
  Patients with DR experience many socioemotional issues in addition to vision-related activity limitations. Data from this study will be used to generate data for a DR-specific QoL item bank.
authors.affiliation: Centre for Eye Research Australia, Royal Victorian Eye and Ear Hospital, University of Melbourne, 32 Gisborne St, East Melbourne, VIC 3002, Australia.
authors.forename: Eva K
authors.initials: EK
authors.lastname: Fenwick
authors.forename: Konrad
authors.initials: K
authors.lastname: Pesudovs
authors.forename: Jyoti
authors.initials: J
authors.lastname: Khadka
authors.forename: Mohamed
authors.initials: M
authors.lastname: Dirani
authors.forename: Gwyn
authors.initials: G
authors.lastname: Rees
authors.forename: Tien Y
authors.initials: TY
authors.lastname: Wong
authors.forename: Ecosse L
authors.initials: EL
authors.lastname: Lamoureux
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D003930:Diabetic Retinopathy / Q000503:physiopathology* / Q000523:psychology* / Q000628:therapy; D005260:Female; D017144:Focus Groups; D006801:Humans; D008297:Male; D008875:Middle Aged; D017063:Outcome Assessment, Health Care / Q000379:methods*; D011788:Quality of Life; D011795:Surveys and Questionnaires; D014786:Vision Disorders / Q000175:diagnosis*