Sarcoidosis Registry Proforma

Transcription

1 Patient Demographics<br /> Patient Data Has a patient consent form been completed? 1.1 Title Mr Forename(s) PlainText Surname PlainText 1.4 Gender Male Mrs Ms Miss Dr Other Female Date of Birth Date NHS number PlainText Date first seen in this clinic Age when first seen in this clinic (calculated) Home postcode Date CalculateYears PlainText 1.10 How did the patient come to this clinic? t recorded Where did the referral to this clinic come from? GP postcode Consultant name (for this clinic) PlainText PlainText Secondary care (non respiratory specialist) Secondary care (respiratory specialist) Other tertiary care specialist General practitioner Page 1 of January 2017

2 Patient Demographics<br /> Patient Data 1.13 Ethnic group White British White Irish White - any other background Mixed (White and Caribbean) Mixed (White and Black African) Mixed (White and Asian) Any other mixed background Indian Pakistani Bangladeshi Any other Asian background Caribbean African Any other Black background Chinese Any other ethnic group t stated 1.14 First degree relative(s) with sarcoidosis - none - Mother - Brother - Sister - Father t known t recorded Tick all that apply 1.15 Current occupation PlainText Brief details of current job Page 2 of January 2017

3 Patient Demographics<br /> Patient Data 1.16 When was the initial diagnosis of sarcoidosis made? (Please read helpnote text) Less than 12 months ago? More than 12 months ago? If the diagnosis of sarcoidosis was made more than 12 months ago, you will be asked to enter data about the initial diagnosis (part B) and data about current investigations at the time of this clinic visit (part C).If the diagnosis of sarcoidosis was made less than 12 months ago (from the date of this clinic visit) you will be asked to complete questions in part C only. Initial Diagnosis: Part B 2.1 Date of initial diagnosis of sarcoidosis Date If the precise date is not know, enter the year of 2.2 Diagnosis made at time of initial diagnosis CT Biopsy Clinically t recorded diagnosis in the format 01/01/yyyy 2.3 Smoker at initial diagnosis? Select ex-smoker if quit more than three months Current smoker Ex-smoker Unknown before diagnosis Page 3 of January 2017

4 Initial Diagnosis: Part B 2.4 Co-morbidities (at the time of diagnosis). - none Tick all that apply Asthma TB COPD Lung cancer Diabetes Obesity Hypertension Ischaemic heart disease Arrythmia 2.5 Sarcoidosis confirmed on histology? 2.6 Endobronchial biopsy? 2.7 Transbronchial biopsy? 2.8 EBUS? 2.9 Mediastinoscopy? Other t recorded t recorded t recorded t known t recorded Page 4 of January 2017

5 Initial Diagnosis: Part B 2.10a Lung biopsy t recorded 2.10b Other biopsy site? - Liver - Skin - Extrathoracic lymph node - Brain - Heart - Kidney - Other 2.11 Bronchoscopy (if done as part of investigations at initial diagnosis)? Unknown 2.12 Bronchoalveolar lavage (if done as part of investigations at initial diagnosis)? Unknown 2.12a If bronchoalveolar lavage done, please give % lymphocytes Integer Page 5 of January 2017

6 Initial Diagnosis: Part B 2.13 Symptoms at initial diagnosis? ne Cough Fever Breathlessness Lupus pernio Erythema nodosum Subcutaneous nodules Other skin rash Eye symptoms Fatigue Neurological symptoms Joint pain Other t known Tick all that apply. Page 6 of January 2017

7 Initial Diagnosis: Part B 2.14 MRC dyspnoea grade (at initial diagnosis) Grade 1: not troubled by breathlessness except on strenuous exercise Grade 2: short of breath when hurrying or walking up a slight hill Grade 3: walks slower than peers on level ground, or has to stop for breath when walking at own pace Grade 4: stops for breath after walking about 100m or after a few minutes on level ground Grade 5: too breathless to leave the house, or breathless when dressing or undressing t recorded Patient not breathless 2.15 Was the diagnosis of sarcoidosis incidental? - abnormal radiology - abnormal blood tests - skin biopsy - other t recorded The diagnosis was made during the course of investigations for other condition(s) Chest radiograph at initial diagnosis? Stage 0 Stage I BHL Stage II BHL + infiltrates Stage III infiltrates alone Stage IV fibrosis t recorded Page 7 of January 2017

8 Initial Diagnosis: Part B 2.17 Blood tests at initial diagnosis Lymphopenia Raised ESR Raised CRP Abnormal liver function Raised Ca2++ Other abnormality t recorded Tick all that apply 2.18a ACE level IU/l 2.18b Immunoglobulin G (IgG) g/l 2.19a FEV1 - absolute value in litres at initial diagnosis if available 2.19b FEV1 - predicted value in litres 2.19c FEV1 % Predicted (calculated field) 2.20a FVC - absolute value in litres at initial diagnosis if available 2.20b FVC - predicted value in litres 2.20c FVC % Predicted (calculated field) 2.21 TLC litres at initial diagnosis if available PlainText 2.22a TLCO mmol/min/kpa at initial diagnosis if available - absolute value 2.22b TLCO (mmol/min/kpa) - predicted value 2.22c TLCO (mmol/min/kpa) % predicted (calculated field) 2.23a KCO mmol/min/kpa/l at initial diagnosis if available - absolute value 2.23b KCO (mmol/min/kpa/l) - predicted value 2.23c KCO (mmol/min/kpa/l) % predicted (calculated field) Page 8 of January 2017

9 Initial Diagnosis: Part B 2.24 Oxygen saturation at initial diagnosis if available 2.25 Treatment record at initial diagnosis ne Oral pred IV methyl Inhaled steroids Methotrexate Azathioprine Hydroxychloroquine Topical therapy Mycophenolate mofetil Infliximab Transplantation LTOT or ambulatory oxygen Other t recorded Tick all that apply 2.26 HRCT at initial diagnosis. Please select all that apply. dules Ground glass density Consolidation Honeycombing Cysts Distortion Traction bronchiectasis Hilar lymphandenopathy Mediastinal lymphandenopathy rmal Current Diagnosis: Part C Page 9 of January 2017

10 Current Diagnosis: Part C 3.1 Date of investigations recorded in this section (use latest date) Date 3.2 Diagnosis made CT Biopsy Clinically t recorded 3.3 Smoker at this visit? Select ex-smoker if quit more than three months Current smoker Ex-smoker Unknown before diagnosis 3.4 Co-morbidities - none Tick all that apply Asthma TB COPD Lung cancer Diabetes Obesity Hypertension Ischaemic heart disease Arrythmia 3.5 Sarcoidosis confirmed on histology? 3.6 Endobronchial biopsy? Other t recorded t recorded Page 10 of January 2017

11 Current Diagnosis: Part C 3.7 Transbronchial biopsy? t recorded 3.8 EBUS? t known 3.9 Mediastinoscopy? t recorded 3.10a Lung biopsy t recorded 3.10b Other biopsy site? - Liver - Skin - Extrathoracic lymph node - Brain - Heart - Kidney - Other 3.11 Bronchoscopy (if done as part of current investigations)? Unknown 3.12 Bronchoalveolar lavage (if done as part of current investigations)? Unknown Page 11 of January 2017

12 Current Diagnosis: Part C 3.12a If bronchoalveolar lavage done, please give Integer % lymphocytes 3.13 Symptoms at current investigation? ne Cough Fever Breathlessness Lupus pernio Erythema nodosum Subcutaneous nodules Other skin rash Eye symptoms Fatigue Neurological symptoms Joint pain Other t known Tick all that apply. Page 12 of January 2017

13 Current Diagnosis: Part C 3.14 MRC dyspnoea grade (at current investigation) Grade 1: not troubled by breathlessness except on strenuous exercise Grade 2: short of breath when hurrying or walking up a slight hill Grade 3: walks slower than peers on level ground, or has to stop for breath when walking at own pace Grade 4: stops for breath after walking about 100m or after a few minutes on level ground Grade 5: too breathless to leave the house, or breathless when dressing or undressing t recorded Patient not breathless 3.15 Was the diagnosis of sarcoidosis incidental? - abnormal radiology - abnormal blood tests - skin biopsy - other t recorded The diagnosis was made during the course of investigations for other condition(s) Chest radiograph (most recent)? Stage 0 Stage I BHL Stage II BHL + infiltrates Stage III infiltrates alone Stage IV fibrosis t recorded Page 13 of January 2017

14 Current Diagnosis: Part C 3.17 Blood tests (most recent) Lymphopenia Raised ESR Raised CRP Abnormal liver function Raised Ca2++ Other abnormality t recorded Tick all that apply 3.18a ACE level IU/l 3.18b Immunoglobulin G (IgG) g/l 3.19a FEV1 - absolute value in litres at current investigation if available 3.19b FEV1 - predicted value in litres 3.19c FEV1 % predicted (calculated field) 3.20a FVC - absolute value in litres at current investigation if available 3.20b FVC - predicted value in litres 3.20c FVC % predicted (calculated field) 3.21 TLC litres at current investigation if PlainText available 3.22a TLCO mmol/min/kpa at current investigation if available - absolute value 3.22b TLCO (mmol/min/kpa) - -predicted value 3.22c TLCO (mmol/min/kpa) % predicted (calculated field) 3.23a KCO mmol/min/kpa/l at current investigation if available - absolute value 3.23b KCO (mmol/min/kpa/l) - predicted value Page 14 of January 2017

15 Current Diagnosis: Part C 3.23c KCO (mmol/min/kpa/l) % predicted (calculated field) 3.24 Oxygen saturation at current investigation if available 3.25 Treatment record at current investigation ne Oral pred IV methyl Inhaled steroids Methotrexate Azathioprine Hydroxychloroquine Topical therapy Mycophenolate mofetil Infliximab Transplantation LTOT or ambulatory oxygen Other t recorded Tick all that apply Page 15 of January 2017

16 Current Diagnosis: Part C 3.26 HRCT (latest). Please select all that apply. dules Ground glass density Consolidation Honeycombing Cysts Distortion Traction bronchiectasis Hilar lymphandenopathy Mediastinal lymphandenopathy rmal 3.27 Is the patient recruited to a clinical trial? 3.27a 3.27b 3.27c Name of trial Date enrolled Date trial ended PlainText Date Date 3.28 Would you consider this patient for recruitment to a clinical trial in sarcoidosis pending detailed inclusion/exclusion criteria? 3.29 Has the patient agreed that they can be contacted by the clinical staff within their hospital about any future research study (question 4 on the consent form)? t known Do not know Follow Up Annual Follow up 1 Date of annual review Date Page 16 of January 2017

17 Follow Up Annual Follow up 2 Symptoms at annual review? ne Cough Fever Breathlessness Lupus pernio Erythema nodosum Subcutaneous nodules Other skin rash Eye symptoms Fatigue Neurological symptoms Joint pain Other t known Tick all that apply. Page 17 of January 2017

18 Follow Up Annual Follow up 3 MRC dyspnoea grade (at annual review) Grade 1: not troubled by breathlessness except on strenuous exercise Grade 2: short of breath when hurrying or walking up a slight hill Grade 3: walks slower than peers on level ground, or has to stop for breath when walking at own pace Grade 4: stops for breath after walking about 100m or after a few minutes on level ground Grade 5: too breathless to leave the house, or breathless when dressing or undressing t recorded Patient not breathless 4 Chest radiograph (most recent)? Stage 0 Stage I BHL Stage II BHL + infiltrates Stage III infiltrates alone Stage IV fibrosis t recorded Page 18 of January 2017

19 Follow Up Annual Follow up 5 Blood tests (most recent) Lymphopenia Raised ESR Raised CRP Abnormal liver function Raised Ca2++ Other abnormality t recorded Tick all that apply 6a ACE level IU/l 6b Immunoglobulin G (IgG) g/l 7 Height (most recent) In metres 8 Weight (most recent) Integer Kg 9 Body Mass Index (BMI) CalculateCCI Calculated field 10a FEV1 - absolute value in litres at current investigation if available 10b FEV1 - predicted value in litres 10c FEV1 % predicted (calculated field) 11a FVC - absolute value in litres at current investigation if available 11b FVC - predicted value in litres 11c FVC % predicted (calculated field) 12 TLC litres at current investigation if available 13a. TLCO mmol/min/kpa at current investigation if available - absolute value 13b. TLCO (mmol/min/kpa) - predicted value 13c. TLCO (mmol/min/kpa) % predicted (calculated field) Page 19 of January 2017

20 Follow Up Annual Follow up 14a. KCO mmol/min/kpa/l at current investigation if available - absolute value 14b. KCO (mmol/min/kpa/l) - predicted value 14c. KCO (mmol/min/kpa/l) % predicted (calculated field) 15 Oxygen saturation at current investigation if available 16 Treatment record at annual review ne Oral pred IV methyl Inhaled steroids Methotrexate Azathioprine Hydroxychloroquine Topical therapy Mycophenolate mofetil Infliximab Transplantation LTOT or ambulatory oxygen Other t recorded Tick all that apply Page 20 of January 2017

21 Follow Up Annual Follow up 17 HRCT (latest). Please select all that apply. dules Ground glass density Consolidation Honeycombing Cysts Distortion Traction bronchiectasis Hilar lymphandenopathy Mediastinal lymphandenopathy rmal 18. Is the patient enrolled in a clinical trial? 18.a 18.b 18.c Name of trial Date enrolled Date trial ended PlainText Date Date 19. Would you consider this patient for recruitment to a clinical trial in sarcoidosis pending detailed inclusion/exclusion criteria? 19.a Has the patient agreed that they can be contacted by the clinical staff within their hospital about any future research study (quesiton 4 on the consent form)? If the patient died during the period since the last review please give date of death If the patient died in the period since the last review please give cause of death. Date PlainText t known Do not know Page 21 of January 2017

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