Background
Methods
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. |
Data analysis
n = 138 | |
---|---|
n (%) | |
Mean age (SD) | 54 (14.30) |
Gender | |
Female | 101 (73 %) |
Male | 37 (27 %) |
Ethnicity | |
White | 73 (53 %) |
Other | 65 (47 %) |
Disability | |
Yes | 48 (35 %) |
No/Unsure | 90 (65 %) |
Results
Study participants
MAPLe-RA scale properties
Item discriminations | Item difficulties | |||
---|---|---|---|---|
Items | Estimate (SE) | P-value | Estimate (SE) | P-value |
Physical domain | ||||
Swelling of the joints | 1.38 (0.58) | 0.018 | −1.22 (0.30) | <0.001 |
Pain | 1.74 (0.82) | 0.034 | −1.25 (0.30) | <0.001 |
Morning stiffness | 1.25 (0.47) | 0.008 | −1.00 (0.25) | <0.001 |
Mobility | 1.04 (0.41) | 0.012 | −1.16 (0.31) | <0.001 |
Fatigue | 0.87 (0.26) | 0.001 | −0.96 (0.25) | <0.001 |
Visible signs of RA | 0.49 (0.16) | 0.002 | 0.19 (0.24) | 0.427 |
Joint damage | 0.40 (0.15) | 0.006 | −0.62 (0.34) | 0.066 |
Psycho-social domain | ||||
Maintain my independence | 1.46 (0.39) | <0.001 | −0.14 (0.13) | 0.270 |
Improvements in my general health | 0.85 (0.23) | <0.001 | 0.06 (0.17) | 0.712 |
Everyday activities | 1.27 (0.40) | 0.001 | −0.32 (0.14) | 0.027 |
To feel in control of my RA self-manage | 1.64 (0.49) | 0.001 | −0.46 (0.13) | 0.001 |
To maintain my social roles | 1.87 (0.63) | 0.003 | −0.30 (0.12) | 0.016 |
My emotional well-being | 1.77 (0.51) | 0.001 | −0.42 (0.13) | 0.001 |
Impact of new Treatment | ||||
Feel better overall | 1.47 (0.38) | <0.001 | −1.02 (0.20) | <0.001 |
Reduce the likelihood of surgery | 0.89 (0.27) | 0.001 | −1.19 (0.29) | <0.001 |
To prevent other physical complications | 0.70 (0.27) | 0.008 | −1.47 (0.44) | 0.001 |
To come with detailed information from the medical staff | 1.16 (0.45) | 0.010 | −1.36 (0.34) | <0.001 |
Decision making with the clinical staff | 0.87 (0.34) | 0.010 | −1.65 (0.47) | <0.001 |
Regular physical assessment | 1.41 (0.52) | 0.007 | −1.36 (0.29) | <0.001 |
Regular emotional well-being | 0.81 (0.26) | 0.001 | −0.90 (0.25) | <0.001 |
Not to have to change medication | 0.52 (0.18) | 0.005 | −1.14 (0.40) | 0.004 |