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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]