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Table 2 Summary of questions asked in clinician survey compared to the parent and patient questionnaires

From: Development of an internationally agreed minimal dataset for juvenile dermatomyositis (JDM) for clinical and research use

Domain Questions asked of healthcare professionals in Delphi 1 and 2 Questions asked in parent questionnaire Questions asked in young person’s questionnaire
General format of questionnaire Two separate sections: Section A – when patient seen for their first visit only; Section B – all visits (first and subsequent). Asked to rate importance of each variable on a 1–9 scale separately for clinical use and for research Asked to rate: How important do you think each one of these is when thinking about how well or unwell your child is due to JDM? (“not that important”/ “important”/or “really important”). Not asked separately about clinical/research Asked to rate: How important do you think each one of these is when thinking about how well or unwell you are due to JDM (“not that important”/“important”/“really important”) Not asked separately about clinical/research
General questions on collecting and storing information and/or specimens N/A Asked to rate how important they think it is for all doctors and nurses/therapists to collect key information in the same way when they are looking after children with juvenile dermatomyositis (JDM) Asked to rate how important they think it is for all doctors and nurses/therapists to collect key information in the same way when they are looking after children with JDM
How important do you rate storing specimens at diagnosis for other biomarkers? (eg., DNA/serum/any other material)a Asked to rate how important they think it is to store the type of information collected in clinic in a research database Asked to rate how important they think it is to store the type of information collected in clinic in a research database
Demographics of patient Date of birth N/A N/A
Gender
Race
Ethnicity
Family history Of autoimmune disease N/A N/A
Of neuromuscular disease
Diagnostic data (general) Age of onset of JDM N/A N/A
Age of diagnosis of JDM
MUSCLE – Diagnostic/activity data Presence of symmetrical proximal muscle weakness: at diagnosis (section A) and every visit (section B) Asking you if your child has any weakness Asking if you have any weakness
Presence of other muscle weakness (eg., distal or asymmetrical): section B only
Use of a validated tool to score muscle strength and/or function (options for different muscle strength scores)a Testing to see how strong your child is Testing to see how strong you are
SKIN – Diagnostic/activity data Heliotrope rash (sections A and B) Asking you if your child has any skin rashes Asking if you have any skin rashes
Gottron’s papules/Gottron’s sign (sections A and B)
Nail-fold capillary changes (sections A and B)
Other characteristic JDM rash
Use of a validated skin tool for JDM (options given to choose specific tools)a Looking for rashes or skin signs that may suggest active JDM Looking for rashes or skin signs that may suggest active JDM
SKIN – Additional activity data asked in section B only Lipodystrophy N/A N/A
Calcinosis
Cutaneous ulceration
Subcutaneous oedema
Malar/facial erythema
Shawl sign/V-sign
Mechanic’s hands
Alopecia
Vasculopathic lesions
Photosensitivity
Livido reticularis
Other erythema
Panniculitis
MAJOR ORGAN INVOLVEMENT due to myositis – asked in section B only of clinician survey, plus patient/parent questionnaires Musculoskeletal involvement (specific questions added for arthritis/contractures)a Asking if your child has any muscle or joint pains Asking if you have any muscle or joint pains
Looking for swelling in any of the joints Looking for swelling in any of the joints
Gastrointestinal involvement (specific questions added for dysphagia/abdominal pain or GI ulceration)a Asking if your child has any difficulty with swallowing/eating or if they have tummy pain Asking if you have any difficulty with eating or if you have tummy pain
Pulmonary involvement suggesting interstitial lung disease Asking if your child has any shortness of breath or chest pain that may be related to JDM Asking if you have any shortness of breath or chest pain that may be related to JDM
Cardiac involvement
CONSTITUTIONAL SYMPTOMS due to myositis – asked in section B only of clinician survey and in patient/parent questionnaire Fever (>38 °C) due to myositis N/A N/A
Weight loss (>5 %) due to myositis N/A N/A
Fatigue due to myositis Asking if your child feels tired due to JDM Asking if you feel tired due to JDM
Asking how tired your child feels using a formal “fatigue scale” Asking how tired you feel using a formal ‘fatigue scale’
Irritability due to myositis Asking if your child feels irritable or miserable due to JDM Asking if you feel irritable or miserable due to JDM
Raynaud’s phenomenon Asking if your child gets colour changes in their hands in cold weather Asking if you get colour changes in your hands in cold weather
Growth Height of patient (section B only) Checking how well your child is growing (height) Checking how well you are growing
Weight of patient (section B only) Asking about any weight loss and checking your child’s weight Asking about any weight loss and checking your weight
Development/puberty N/A Asking about how your child is developing or how puberty is progressing Asking about how you are developing or how puberty is progressing
Other information Presence of malignancy (section B only) N/A N/A
Patient having ongoing follow-up at this centre? (If no: options given for reason why)a
Global disease activity Use of a physician-scored measure of global disease activity - such as physician Visual Analogue Scale; VAS (specific choices for activity scores given)a Asking your doctor to mark on a 0–10 cm scale how well or unwell they think your child has been based on what you tell them and what they see at your clinic visit Asking your doctor to mark on a 0–10 cm scale how well or unwell they think you have been
Patient/parent Reported Outcome Measures (PROMs), Quality of Life/School issues Use of a patient/parent reported outcome measure of disease activity or use of a validated measure of function (such as patient VAS/CHAQ) and/or a tool to measure Quality of Life (QoL) (specific choices given)a Asking you or your child to complete a questionnaire that looks at how easy or difficult it is for them to do things like get dressed, have a bath, do activities Asking you or to complete a list of questions that look at how easy or difficult it is for you to do things like get dressed, have a bath, do activities
Asking you/your child to mark on a 0–10 cm scale how well or unwell your child has been over the last 4 weeks Asking you to mark on a 0–10 cm scale how well or unwell you have been over the last 4 weeks due to JDM
Asking you/your child to mark on a 0–-10 cm scale how much pain your child has had in the last 4 weeks due to JDM Asking you to mark on a 0–10 cm scale how much pain you have had in the last 4 weeks due to JDM
Asking how many days your child has missed school or college due to JDM Asking how many days you have missed school or college due to JDM
  Asking more questions about your child’s school – how are things? Are they able to keep up with peers? Asking more questions about school – how are things? Are you able to keep up with your peers?
Asking your child how they feel emotionally in relation to their JDM (questions relating to Quality of Life or mood) Asking about your feelings in relation to your JDM
INVESTIGATIONS: diagnostic data/disease activity data Elevation of muscle enzymes at diagnosis (section A) or later in disease course (section B). (Questions asked about which specific enzymes to measure)a Taking blood tests to monitor how active the disease is Taking blood tests to monitor how active the disease is
Electromyography (EMG) changes of myositis at diagnosis (section A)   
Muscle biopsy evidence of myositis at diagnosis (section A)   
Magnetic Resonance Imaging (MRI) changes of myositis at diagnosis (section A) Asking your child to have a scan such as an MRI scan of their muscles to monitor the disease Asking you to have a scan such as an MRI scan of your muscles
Section B only: abnormal investigations (imaging, histology or cardio-pulmonary function tests indicating flare of myositis). If “yes,” tick which investigations are abnormal
Anti-nuclear Antibody (ANA) positivity at diagnosis (section A only)   
Myositis specific antibody (MSA) positive at diagnosis (section A only)   
Myositis associated antibody (MAA) positivity at diagnosis (section A only)   
Treatment Date treatment started (mm/yyyy) Asking specific questions about your child’s medicines and how they make them feel? Any unwanted effects? Asking specific questions about your medicines and how they make you feel? Any unwanted effects?
Patient taking steroids? Yes/No (options for type of steroid given)a Asking you about the medicines your child is taking at the moment Asking you about the medicines you are taking at the moment
Patient taking a Disease Modifying Anti-Rheumatic Drug (DMARD)? (Not including biologic DMARDS) Yes/No (with option to select name of drug from a list)
Patient taking a biologic? Yes/No (with option to select name of drug from a list)
Patient having physiotherapy and/or occupational therapy? Asking you if your child is doing any physiotherapy exercises Asking you if you are doing your physiotherapy exercises
Other questions To determine practice and experience - primary role, patient group, number of paediatric/adult patients under their care, geographical region of practice and membership of societies/professional bodies How would you prefer information to be asked of you? (eg., in clinic, questionnaire before clinic, questionnaire before you come to clinic) How would you prefer information to be asked of you? (eg., in clinic, questionnaire before clinic, questionnaire before you come to clinic)
Further information Are there any variables that you think are important for clinical care that are not currently included in the list above? If so, please state what these are (same question also asked separately for variables important for research) Are there any other key questions that we have missed but that you think it is important for us to ask when you come to clinic, thinking about how well/unwell you/your child is? If so, what key questions are they? Are there any other key questions that we have missed but that you think are important for us to ask when you come to clinic, thinking about how well or unwell you are? If so, what key questions are they?
   Is there anything in this list (or from your experience of bringing your child to clinic) that you do not think should be included or you think your child does not like? If so, what? Why do you think that these questions should not be included? Is there anything in this list (or from your experience of coming to clinic) that you do not like? If so, what? Why do you think that these questions should not be included?
  1. aFurther detailed questions asked in hidden rows, exposed if the answer to the preceding question suggests that the participant thinks that the variable is important
  2. N/A, not applicable