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Table 1 Statements and topics that rheumatologists generated across the 4 nominal groups with their respective percentage votesa

From: Which patient reported outcome domains are important to the rheumatologists while assessing patients with rheumatoid arthritis?

Statement Percentage votes (%)
(Available votes = 150)
Topics Example of PROs Instrument
Swollen and tender joints and morning stiffness 10.0 Symptom RADAI [6]
RADAR [7]
Joints with pain, swelling and limited range of motion 9.3 Symptom RADAI
RADAR
Patient reported painful swollen joints 5.3 Symptom RADAI
RADAR
Duration of morning stiffness 4.7 Symptom Morning stiffness duration [8]
Flare up – frequency, severity and length of flare 4.7 Symptom OMERACT Flare core domain set [9]
How the patient feels - energy level, joint pains 2.0 Symptom PROMIS -short form fatigue [10]
Duration of morning stiffness 2.0 Symptom Morning stiffness duration
Increase in joint swelling 2.0 Symptom RADAI
Features of inflammatory pain 1.3 Symptom  
Correlation between symptoms and physical examination 1.3 Symptom  
Any new symptoms or change since last visit 1.3 Symptom  
Pace of developing new symptoms 0.7 Symptom  
Fatigue compared to prior to disease onset 0.7 Symptom PROMIS short form fatigue [10]
Sleep patterns 0.7 Symptom PROMIS Sleep Disturbance [11]
Sleep patterns 0.0 Symptom PROMIS Sleep Disturbance [11]
Weight loss and energy levels 0.0 Symptom PROMIS Fatigue
Flare up resulting in visit to Emergency room 0.0 Symptom OMERACT Flare core domain set [9]
Weight loss or weight gain 0.0 Symptom  
Description of patient’s pain 0.0 Symptom Pain Intensity (numeric rating scale), visual analogue scale [12]
Ability to perform ADLs/HAQ 6.7 Physical Function HAQ [13] PROMIS physical function [14]
Function/HAQ score 3.3 Physical Function HAQ [13]
MDHAQ [15]
Impact of RA on activities of interest 2.0 Physical Function PROMIS Discretionary Social Activities [16]
Ability to participate in recreational activities 1.3 Physical Function HAQ
Work performance and recreation 1.3 Physical Function WPAI [17]
Change in ability to do activities 0.7 Physical Function HAQ
Decline in functional status 0.7 Physical Function HAQ
Ability to participate in activities 0.0 Physical Function HAQ
Work productivity 0.0 Physical Function WPAI [17]
Work stability 0.0 Physical Function  
Myofascial pain vs articular symptoms 0.0 Physical Function  
Presence of synovitis, number of joints, joint tenderness 4.7 Physical findings  
Tender and swollen joint count 3.3 Physical findings  
Number of swollen joints and overall mobility 2.7 Physical findings  
Number of tender joints 2.0 Physical findings  
Joint changes due to destruction or activity 0.7 Physical findings  
Articular deformities 0.0 Physical findings  
Patient assessment of disease activity 3.3 Response to treatment  
Patient feels need for medication adjustment 1.3 Response to treatment  
History of RA medication use 1.3 Response to treatment  
Adequate dosage of RA medication per patient 0.7 Response to treatment  
Improvement after change in medication 0.0 Response to treatment  
Toxicity from RA medications 2.0 Side effect  
Medication tolerance 1.3 Side effect  
Tolerance and adverse effects 1.3 Side effect  
Infections or hospitalizations 0.0 Side effect  
Inflammatory markers 2.0 Tests  
Positive rheumatoid factor and anti-CCP antibodies 2.0 Tests  
X-ray Changes 0.0 Tests  
History of bone erosions 0.0 Tests  
Compliance to current medications 2.0 Adherence  
Barriers to medication compliance 2.0 Adherence  
Issues with administration of RA medications 0.0 Adherence  
Frequency of missing RA medications 0.0 Adherence  
Compliance and regular Refilling of prescriptions 0.0 Adherence  
New or existing comorbidities 2.0 Comorbidities or medical history  
Past medical history impacting medication choices 1.3 Comorbidities or medical history  
Tuberculosis, liver disease, Congestive heart failure or malignancy 0.0 Comorbidities or medical history  
New comorbid conditions 0.0 Comorbidities or medical history  
Sleep issues or Cardiovascular risk 0.0 Comorbidities or medical history  
Smoking 0.0 Comorbidities or medical history  
Alcohol consumption 0.0 Comorbidities or medical history  
Immunization status 0.0 Comorbidities or medical history  
TB exposure 0.0 Comorbidities or medical history  
Smoking, alcohol, cholesterol levels and blood pressure 0.0 Comorbidities or medical history  
Immunization status 0.0 Comorbidities or medical history  
ILD from RA 1.3 Organ involvement  
Organ involvement from RA 0.0 Organ involvement  
Steroid dose and frequency 0.7 Pain Medication  
Opiate use 0.0 Pain Medication  
Steroid use between visits 0.0 Pain Medication  
Use of acetaminophen and NSAIDs 0.0 Pain Medication  
Use of prednisone and NSAIDs 0.0 Pain Medication  
OTC nutritional supplements 0.0 Pain Medication  
Change in financial status or health insurance 0.0 Access to Care  
Financial limitations caused by RA 0.0 Access to Care  
Finances, transportation, insurance coverage 0.0 Access to Care  
Impact of contraception on RA medication 0.0 Contraception  
Current use of contraception 0.0 Contraception  
Impact of RA on patient’s relationship 0.0 Social aspects  
Current or planning of pregnancy 0.0 Social aspects  
Patient’s ability to manage disease 0.0 Social aspects  
History of depression 0.0 Social aspects  
Hobbies/sports 0.0 Social aspects  
Family responsibilities 0.0 Social aspects  
Planning parenthood 0.0 Social aspects  
Social history and change in job 0.0 Social aspects  
  1. aNote: Each of the statements listed here were generated in the nominal groups. Few participants may have mentioned the same statement in different groups and they were added here with the respective percentage vote that receive in each particular group
  2. HAQ Health assessment questionnaire [13], ADLs Activities of daily living, Anti-CCP Anti-Cyclic Citrullinated Peptide, TB Tuberculosis, ILD Interstitial lung disease, NSAIDs Non-steroidal anti-inflammatory drugs, OTC Over the counter
  3. OMERACT Outcome Measures in Rheumatology
  4. RADAI Rheumatoid Arthritis Disease Activity Index [6]
  5. RADAR Rapid Assessment of Disease Activity in Rheumatology [7]
  6. PROMIS Patient Reported Outcomes Measurement Information System [10, 11, 14, 16]
  7. WPAI Work productivity and activity impairment Questionnaire [17]