The impact of diabetic retinopathy on quality of life: qualitative findings from an item bank development project.

Purpose: 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...

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Publicado en:Quality of Life Research Vol. 21; no. 10; pp. 1771 - 1783
Autores principales: Fenwick EK, Pesudovs K, Khadka J, Dirani M, Rees G, Wong TY, Lamoureux EL, Fenwick, Eva K, Pesudovs, Konrad, Khadka, Jyoti, Dirani, Mohamed, Rees, Gwyn, Wong, Tien Y, Lamoureux, Ecosse L
Formato: research Journal Article
Publicado: Springer Nature Dec2012
Acceso en línea:Ver este registro en EBSCOhost
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      dt: Dec2012
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      pub: Springer Nature
      place: New York, New York
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        atl: The impact of diabetic retinopathy on quality of life: qualitative findings from an item bank development project.
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        au:
          Fenwick EK
          Pesudovs K
          Khadka J
          Dirani M
          Rees G
          Wong TY
          Lamoureux EL
          Fenwick, Eva K
          Pesudovs, Konrad
          Khadka, Jyoti
          Dirani, Mohamed
          Rees, Gwyn
          Wong, Tien Y
          Lamoureux, Ecosse L
        affil: Centre for Eye Research Australia, Royal Victorian Eye and Ear Hospital, University of Melbourne, 32 Gisborne St, East Melbourne, VIC 3002, Australia
      sug:
        subj:
          Diabetic Retinopathy Physiopathology
          Diabetic Retinopathy Psychosocial Factors
          Outcome Assessment Methods
          Quality of Life
          Vision Disorders Diagnosis
          Adult
          Aged
          Aged, 80 and Over
          Diabetic Retinopathy Therapy
          Female
          Focus Groups
          Human
          Male
          Middle Age
          Questionnaires
          Adult: 19-44 years
          Aged: 65+ years
          Aged, 80 & over
          Middle Aged: 45-64 years
          Female
          Male
      ab: Purpose: 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.
      pubtype: Academic Journal
      doctype:
        research
        Journal Article
      ougenre: Article
    language: English
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