Over the years I have been asked by doctors and health officials to fill in a “Quality of Life” questionnaire appertaining to Gaucher and Parkinson’s disease. I understand this can only give the doctors an indication of how the patient perceives their illness and how well they are coping, but I believe this test leaves much to be desired. Firstly, there is the question of background. I was born in England and once when filling out one of these questionnaires in the USA, I realised that although the British share a common language with Americans, the differences between us culturally is remarkable. I am quite sure my answers on the American based questionnaire bared little relevance to my true situation and if anything gave a false picture.
The answers given – usually multiple choice style – do not take into consideration cultural differences nor how a disease can have very different repercussions on an individual. Since we are all very different, the answers are naturally subjective. There is also a matter of honesty. There are usually very personal questions relating to one’s sex life, depression and even suicidal thoughts. How many people really answer these extremely intimate questions truthfully? Doctors may be surprised to find the answer is: very few!
I don’t know what could be created to replace this system of “quality of life” questionnaire that no doubt most people have filled in at one point or another, but in my opinion, the present system helps neither doctor or patient.