The Quality of Life Research Journal, A-21, Abstract #1150

Abstract presented as a poster at 14th annual ISOQOL conference in Toronto 10-13.10.2007

AIM: Several treatments for wet macular degeneration (MD) are now available and new treatments are being developed and evaluated. A measure of treatment satisfaction in MD patients is urgently needed. Design work on the MacTSQ is described.

METHOD: A preliminary draft MacTSQ with 14 items was prepared using an existing measure of treatment satisfaction in diabetic retinopathy (RetTSQ) as a starting point. Items were scored from 6 (e.g. very satisfied) to 0 (e.g. very dissatisfied). A final open question elicited any satisfaction or dissatisfaction not already covered. Participants (N=20; mean age 71 years; 13 women, 7 men), had received treatment for MD in the UK, including laser (N=3), photodynamic therapy (7), anti-VEGF injection (Lucentis or Avastin) (6), steroid injection (1), vitamin/mineral supplements (2) and acupuncture (1). They took part in semi-structured interviews (recorded) to elicit their experience of MD and its treatment, before completing and commenting on the draft MacTSQ.

RESULTS: During the interview process 2 items were removed (less relevant for MD treatment): difficulty of treatment; influence over treatment. Three items relevant to MD patients were added: cost of treatment (some MD treatments are available to some patients only privately); difficulty of journey to clinic; experience of angiogram (for some the diagnostic test was more unpleasant than treatment). Two items were expanded or reworded to elicit more comprehensive data: e.g. adequacy and timing of information given about treatment (some interviewees reported information was not given, was too technical or was given too late to be of use). Perhaps surprisingly, the 6 patients who had had anti-VEGF intravitreal injections reported high levels of satisfaction with little or no discomfort or distress. Overall data indicated high levels of satisfaction across most domains for the 3 main treatment groups.

CONCLUSION: The MacTSQ will be useful in clinical trials and routine clinical practice for a wide range of treatments. Use of the measure in a forthcoming clinical trial of anti-VEGF treatments will enable psychometric evaluation.