Page 31 - Support Magazine Winter 2017
P. 31

The aim of this survey is to learn from your experience when choosing dialysis or kidney
                                      transplantation.
                                        We are researchers from the AMC hospital in Amsterdam conducting this survey as part of a
         The (΍HFW of Di΍HUing Kidney Disease 7UHDWPHnW ModaliWies and OUgan DonDWion  large European research project (EDITH) (http://edith-project.eu/). The European Union strives
         and 7UDnsplanWDWion 3UDFWiFHV on HealWh ExpendiWuUH and 3DWienW OuWFRPHs
        Welcome to this survey for dialysis and  for equal access to different forms of treatment for all European patients with end-stage kidney
        kidney transplant patients!   disease. The results of this survey will help to understand the current situation to improve
         The European Kidney Patients'  quality of care.
        Federation would like you to give your  Important to know: This survey is anonymous and takes 10-15 minutes to complete. Feel free to
        opinion on treatment choices you have  make a copy and give to other patients on dialysis or with a kidney transplant.
        or had for end-stage kidney disease.  You can also access and complete this survey online at...www.ika.ie
       1.  What type of treatment for end-stage kidney disease do you receive NOW? Choose one option.
           Haemodialysis (in hospital or dialysis centre)                   Kidney transplant from a living donor
           Home haemodialysis                                                      Kidney transplant from a deceased donor
           Peritoneal dialysis (APD/ CCPD or CAPD)
       2.  In which year did you start your CURRENT treatment?              (Please fill out the year)
       3.  Are you on the waiting list for a kidney transplant from a deceased donor AT THIS MOMENT?
           Yes Go to question 5     No Choose one of the 7 reasons below.     I do not know
           I currently have a kidney transplant                                I do not want to have a kidney transplant
           I cannot have a kidney transplant for medical reasons    I cannot afford to have a kidney transplant
           I expect to receive a kidney from a living donor              My hospital does not offer kidney transplantation
           I expect to be on the waiting list later on
       4.  Have you EVER been on the waiting list for a kidney transplant from a deceased donor?
           Yes                          No                           I do not know

       5. Did you ever undergo HAEMODIALYSIS (in hospital or dialysis centre)?   Yes        No
          If Yes, why?                                                                      If No, why not?
          Tick the most important reasons with a maximum of 5.                             Tick the most important reasons with a maximum of 5.
           No other treatment possible                                           A kidney transplant was already available
           I had to start treatment immediately                              Treatment is not available in my hospital
           My previous treatment failed                                          Lack of information about this treatment
           Life expectancy                                                              Haemodialysis was technically impossible
           Social life                                                                       Life expectancy
           Quality of life                                                                 Quality of life
           Possible to work or study                                               Many hospital visits
           Possible to travel or go on holiday                                  Expensive
           Flexibility to adjust the treatment schedule                     Many dietary restrictions
           Treatment is affordable                                                  Negative impact on social life
           I feel safe in a dialysis centre                                          Difficult to work or study
           Dialysis free days                                                            Difficult to travel or go on holiday
           Professionals take care of me                                         Treatment schedule is not flexible
           Company of other patients                                            Dislike of fistula/graft
           My doctor did not give a choice to me                           Fear of blood or needles
           Other reason ___________________                               Dislike of being with other patients
                                                                                                    My doctor did not offer this treatment to me
                                                                                                     Other reason ___________________
       6. Did you ever undergo HOME HAEMODIALYSIS?           Yes              No
          If Yes, why?                                                                      If No, why not?
          Tick the most important reasons with a maximum of 5.                             Tick the most important reasons with a maximum of 5.
           Effect on life expectancy                                                A kidney transplant was already available
           Effect on social life                                                         Treatment is not available from my hospital
           Effect on quality of life                                                   Lack of information about this treatment
           Possible to work or study                                               I am medically not suitable for this treatment
           Possible to travel or go on holiday                                  I did not want to have treatment at home
           Flexibility to adjust the treatment schedule                     Expensive
           Limited number of hospital visits                                    Many dietary restrictions
           Independence with this treatment                                  Effect on social life
           Dialysis more comfortable at home                                Difficult to work or study
           Treatment is affordable                                                  Difficult to travel or go on holiday
           My doctor preferred this treatment                                Treatment schedule is not flexible
           No other treatment possible                                           Discomfort with no supervision
           Other reason                                                                  Fear of self-needling
                                                                                                     No assistant available
                                                                                                     My doctor did not offer me this treatment
                                                          Other reason
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