TY - JOUR
T1 - The impact of diabetic retinopathy on quality of life: qualitative findings from an item bank development project
AU - Fenwick, Eva
AU - Pesudovs, Konrad
AU - Khadka, Jyoti
AU - Dirani, Mohammed
AU - Rees, Gwyn
AU - Wong, Tien
AU - Lamoureux, Ecosse
PY - 2012/12
Y1 - 2012/12
N2 - 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 patientreported outcome measure. We are developing a DRspecific 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.
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 patientreported outcome measure. We are developing a DRspecific 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.
KW - Diabetic retinopathy
KW - Focus group
KW - Item bank
KW - Patient-reported outcomes
KW - Quality of life
KW - Vision impairment
UR - http://www.scopus.com/inward/record.url?scp=84872345393&partnerID=8YFLogxK
U2 - 10.1007/s11136-012-0110-1
DO - 10.1007/s11136-012-0110-1
M3 - Article
SN - 0962-9343
VL - 21
SP - 1771
EP - 1782
JO - Quality of Life Research
JF - Quality of Life Research
IS - 10
ER -