Table 1 MAPLe-RA questionnaire
A. The Physical domain (physical impact of RA): with the new treatment, I expect: | ||||||
Q1: The swelling of the joints to be | Much better | Better | Same | Worse | Much Worse | non-applicable |
Q2: The pain to be | Much better | Better | Same | Worse | Much Worse | non-applicable |
Q3: My morning stiffness to be | Much better | Better | Same | Worse | Much Worse | non-applicable |
Q4: My mobility to be | Much better | Better | Same | Worse | Much Worse | non-applicable |
Q5: My fatigue to be | Much better | Better | Same | Worse | Much Worse | non-applicable |
Q6: The visible signs of RA (e.g. deformities on my hands) to be | Much better | Better | Same | Worse | Much Worse | non-applicable |
Q7: The joint damage to be caused by RA | Much better | Better | Same | Worse | Much Worse | non-applicable |
Questions for physical domain are coded from 5 = Much better to 0 = non-applicable; overall score for the physical domain ranges between 0 and 35. | ||||||
B. The Psycho-social domain (emotional wellbeing and social aspects of RA): with the new treatment, I expect: | ||||||
Q1: To be able to maintain my independence (e.g. not needing to ask for help making tea) | Much more than usual | More than usual | Same | Worse than usual | Much worse than usual | non-applicable |
Q2: Improvements in my general health in order for me to be able to go back to work and/ or stay in salaried employment: (Please tick here if not applicable) | Much more than usual | More than usual | Same | Worse than usual | Much worse than usual | non-applicable |
Q3: My everyday activities (e.g. shopping) to be facilitated: | Much more than usual | More than usual | Same | Worse than usual | Much worse than usual | non-applicable |
Q4: To feel in control of my RA self manage (e.g. diet)/ cope (e.g. frustration) alongside medical treatment | Much more than usual | More than usual | Same | Worse than usual | Much worse than usual | non-applicable |
Q5: To be able to maintain my social roles (e.g. supporting family/going out with friends) | Much more than usual | More than usual | Same | Worse than usual | Much worse than usual | non-applicable |
Q6: My emotional wellbeing (e.g. mood) to be | Much more than usual | More than usual | Same | Worse than usual | Much worse than usual | non-applicable |
Questions for the Psycho-social domain are coded from 5 = Much more than usual to 0 = non-applicable; overall score for the psycho-social domain range between 0 and 30. | ||||||
C. Impact of new Treatment (Overall Expectations on Impact of Treatment (care delivery)): with the new treatment I expect it: | ||||||
Q1: To make me feel better overall despite side effects | Strongly Agree | Agree | Neither Agree nor Disagree | Disagree | Strongly Disagree | non-applicable |
Q2: To reduce the likelihood of surgery | Strongly Agree | Agree | Neither Agree nor Disagree | Disagree | Strongly Disagree | non-applicable |
Q3: To prevent other physical complications | Strongly Agree | Agree | Neither Agree nor Disagree | Disagree | Strongly Disagree | non-applicable |
Q4: To come with detailed information from the medical staff: | Strongly Agree | Agree | Neither Agree nor Disagree | Disagree | Strongly Disagree | non-applicable |
Q5: To allow me to be involved in the treatment decision making with the clinical staff | Strongly Agree | Agree | Neither Agree nor Disagree | Disagree | Strongly Disagree | non-applicable |
Q6: To include regular physical (e.g. hands and feet) assessments | Strongly Agree | Agree | Neither Agree nor Disagree | Disagree | Strongly Disagree | non-applicable |
Q7: To include regular emotional wellbeing assessments | Strongly Agree | Agree | Neither Agree nor Disagree | Disagree | Strongly Disagree | non-applicable |
Q8: To allow me to not have to change medication so often | Strongly Agree | Agree | Neither Agree nor Disagree | Disagree | Strongly Disagree | non-applicable |
Questions for the impact of new treatment are coded from 5 = strongly agree to 0 = non-applicable; overall score for the impact of new treatment scores range between 0 and 40. | ||||||