A trial to evaluate an extended rehabilitation service for stroke patients (EXTRAS) PATIENT BASELINE ASSESSMENT

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A trial to evaluate an extended rehabilitation service for stroke patients () PATIENT BASELINE ASSESSMENT Version 5: 11 February 2014 Patient Name: Centre Number: date: Assessor (print name): Assessor contact number: Chief Investigator: Address: Professor Helen Rodgers Stroke Research Group Institute for Ageing & Health Newcastle University 3-4 Claremont Terrace NE2 4AE Telephone: 0191 208 6779 Fax: 0191 208 5540 Email: helen.rodgers@ncl.ac.uk Patient V5: 11 February 2014 Page 1 of 18

GENERAL INSTRUCTIONS The form should only be completed by members of staff who have received training about the trial. Please write clearly using a black ballpoint pen. Always make sure that the YES/NO square box answers are completed with a tick. Errors If an error needs to be rectified after the forms have been completed: 1. Draw a single line through the error, do not obscure the original entry 2. Enter the correct data beside 3. Initial and date the change and add a comment if necessary 4. Never use correction fluids. Missing Data Please do not leave blank boxes where a response is expected. If data is missing the following should apply: 1. ND (for not done) should be entered into the field for all tests and examinations which should have been carried out but were omitted. 2. NA (for not applicable) should be entered into the field for missing data if a question does not apply to a patient status. 3. NK (for not known) should be entered when historical information, such as dates of onset of medical conditions is not known/not available. Time Please use the 24 hour clock eg: 15:30 (and not 3.30pm). Dates Please record dates as follows: DD/MM/YYYY. If part of a date is unknown, please complete the corresponding boxes with NK. Patient Identification Please complete the header of all pages with the patient s initials and centre number. Three boxes are made available to record the patient s initials. Generally, each patient will be identified by the first letter of his/her first name, followed by the first letter of his/her middle name, and then followed the first letter of his/her family name. If the patient has a double-barrelled name or split surname (eg. Williams-Smith or O Regan) the first letter of the first part of the surname should be used (eg. W and O respectively in the two examples given). Patient V5: 11 February 2014 Page 2 of 18

CONTACT DETAILS Please record contact details: Address: Tel No: Email address: General Practitioner Details Name: Tel No: Address: Email: Stroke Consultant Details Name: Tel No: Address: Email: Next of Kin Details Name: Tel No: Address: Email: Relationship to patient: Patient V5: 11 February 2014 Page 3 of 18

Please record date of hospital discharge: Please record date of ESD discharge: Please record current residence: Own house/flat Living with family/friends Sheltered housing Residential care/nursing home Other, please state Does the patient live alone? No Yes Patient V5: 11 February 2014 Page 4 of 18

CURRENT HEALTH Abbreviated Mental Test Score Please ask the patient the following questions and tick the box if a correct answer is given. Score 1 for correct answer Score 0 for incorrect answer What is your age? What is the time (to nearest hour)? Give the patient this address: 42 West Street Ask them to remember it as you will ask them for it at end of test What is the year? What is the name of the local hospital? Can the patient recognise two people which you point to? (e.g. therapist, home help) What is your date of birth? (day and month sufficient) What were the years of the First World War? What is the name of the present monarch? Count backwards from 20-1 What was that address I asked you to remember? Score Patient V5: 11 February 2014 Page 5 of 18

Sheffield Screening Test for Acquired Language Disorders For each section, please follow the instructions /give the instructions to the patient. RECEPTIVE SKILLS Score 1 for correct answer Score 0 for incorrect answer a. Verbal comprehension of single words I m going to ask you to point to some of the things in the room Score door light chair ceiling corner b. Comprehension of sequential command i) point to the ceiling and then to the curtain ii) before pointing to the ceiling, touch the chair c. Comprehension of a complex command Tap the chair twice with a clenched fist, while looking at the ceiling d. Recognition of differences in meaning between words I m going to read you a list of words and I want you to tell me which is the odd one out: i) chicken, duck, apple, turkey ii) run, drink, walk, sprint iii) small, large, massive, huge e. Comprehension of a narrative i) I m going to read you a short paragraph and then ask you a question about it. John went to the shop to buy a pen. When he got there he found that he had forgotten his wallet, so he came home and made himself a cup of tea. What should he have taken with him? ii) I m going to read you another paragraph. Mrs Smith visited several shops. She bought a newspaper, a cauliflower, a stamp and some sausages. What was the second shop she visited? Receptive skills total score Patient V5: 11 February 2014 Page 6 of 18

EXPRESSIVE SKILLS Score 1 for correct answer Score 0 for incorrect answer f. Word finding Tell me the names of three well-known places in client s home town. Score one mark if three names are given correctly g. Abstract word finding Tell me another word that means the same as: i) beautiful; ii) angry; iii) ridiculous h. Sequencing Describe how you would make a cup of tea. A correct answer contains two or more appropriate stages in the right order. i. Definitions Describe what the following words mean: i) home; ii) search; iii) ambitious. j. Verbal reasoning I d like you to tell me: i) why you would use an umbrella; ii) why people go on holiday; iii) what would you do if you were locked out of the house. Expressive skills score Receptive and expressive skills total score Patient V5: 11 February 2014 Page 7 of 18

Nottingham Extended Activities of Daily Living Index For each question below, please ask the patient which answer best describes them CURRENTLY and tick the box. They should be asked to report what they have actually done in the last week or so, not what they think they could do, ought to do or would like to do. No With On my own On my help with own a) Mobility difficulty Do you: walk around outside? climb stairs? get in and out of the car? walk over uneven ground? cross roads? travel on public transport? b) In the kitchen Do you: manage to feed yourself? manage to make yourself a hot drink? take hot drinks from one room to another? do the washing up? make yourself a hot snack? c) Domestic tasks Do you: manage your own money when you are out? wash small items of clothing? do your own housework? do your own shopping? do a full clothes wash? d) Leisure Activities Do you: read newspapers or books? use the telephone? write letters? go out socially? manage your own garden? drive a car? Patient V5: 11 February 2014 Page 8 of 18

Oxford Handicap Scale Please ask the patient which ONE statement best describes them CURRENTLY: Tick one box. 0) I have no symptoms at all and cope well with life. 1) I have a few symptoms but these do not interfere with my everyday life. 2) I have symptoms which have caused some changes in my life but I am still able to look after myself. 3) I have symptoms which have significantly changed my life, prevent me coping fully on my own, and I need some help in looking after myself. 4) I have quite severe symptoms which mean I need to have help from other people but I am not so bad as to need attention day and night. 5) I have major symptoms which severely handicap me and I need constant attention day and night. Patient V5: 11 February 2014 Page 9 of 18

Euroquol EQ 5D* For each of the five sets of statements, please ask the patient which best describes their health today and tick ONE box. Mobility I have no problems in walking about I have slight problems in walking about I have moderate problems in walking about I have severe problems in walking about I am unable to walk about Self Care I have no problems washing or dressing myself I have slight problems washing or dressing myself I have moderate problems washing or dressing myself I have severe problems washing or dressing myself I am unable to wash or dress myself Usual Activities (e.g. work, study, housework, family or leisure activities) I have no problems doing my usual activities I have slight problems doing my usual activities I have moderate problems doing my usual activities I have severe problems doing my usual activities I am unable to do my usual activities Pain/Discomfort I have no pain or discomfort I have slight pain or discomfort I have moderate pain or discomfort I have severe pain or discomfort I have extreme pain or discomfort Patient V5: 11 February 2014 Page 10 of 18

Anxiety/Depression I am not anxious or depressed I am slightly anxious or depressed I am moderately anxious or depressed I am severely anxious or depressed I am extremely anxious or depressed Patient V5: 11 February 2014 Page 11 of 18

Euroquol EQ 5D* We would like to know how good or bad your health is TODAY. The best health you can imagine 100 95 This scale is numbered from 0 to 100. 100 means the best health you can imagine. 0 means the worst health you can imagine. 90 85 80 Mark an X on the scale to indicate how your health is TODAY. Now, please write the number you marked on the scale in the box below. 75 70 65 60 55 YOUR HEALTH TODAY = 50 45 40 35 30 25 20 15 10 5 0 The worst health you can imagine *EQ-5D: UK (English) v.2 2009 EuroQol Group. EQ-5D is a trade mark of the EuroQol Group Patient V5: 11 February 2014 Page 12 of 18

Hospital Anxiety and Depression Scale (HADS)* Clinicians are aware that emotions play an important part in most illnesses. This section is designed to help the researchers to know how you feel. I will read you some questions and place a tick in the box opposite the reply that comes closest to how you have been feeling in the past week. Don t take too long over your replies, your immediate reaction to each item will probably be more accurate than a long, thought out response. 1 I feel tense or wound up : Most of the time A lot of the time From time to time, occasionally Not at all 2 I still enjoy the things I used to enjoy: Definitely as much Not quite so much Only a little Hardly at all 3 I get a sort of frightened feeling as if something awful is about to happen: Very definitely and quite badly Yes, but not too badly A little, but it doesn t worry me Not at all 4 I can laugh and see the funny side of things: As much as I always could Not quite so much now Definitely not so much now Not at all Patient V5: 11 February 2014 Page 13 of 18

5 Worrying thoughts go through my mind: A great deal of the time A lot of the time Not too often Very little 6 I feel cheerful: Never Not often Sometimes Most of the time 7 I can sit at ease and feel relaxed: Definitely Usually Not often Not at all 8 I feel as if I am slowed down: Nearly all the time Very often Sometimes Not at all Patient V5: 11 February 2014 Page 14 of 18

9 I get a sort of frightened feeling like butterflies in the stomach: Not at all Occasionally Quite often Very often 10 I have lost interest in my appearance: Definitely I don t take as much care as I should I may not take quite as much care I take just as much care as ever 11 I feel restless as if I have to be on the move: Very much indeed Quite a lot Not very much Not at all 12 I look forward with enjoyment to things: As much as I ever did Rather less than I used to Definitely less than I used to Hardly at all Patient V5: 11 February 2014 Page 15 of 18

13 I get sudden feelings of panic: Very often indeed Quite often Not very often Not at all 14 I can enjoy a good book or radio or television program: Often Sometimes Not often Very seldom * HADS copyright R.P. Snaith and A.S. Zigmond, 1983, 1992, 1994. Record form items originally published in Acta Psychiatrica Scandinavica, 67, 361 70, copyright Munksgaard International Publishers Ltd, Copenhagen, 1983. This edition first published in 1994 by nfernelson Publishing Company Ltd, 389 Chiswick High Road, London W4 4AL GL is part of the GL Education Group This form may not be reproduced by any means without first obtaining permission from the publisher. Email: permissions@gl-assessment.co.uk Patient V5: 11 February 2014 Page 16 of 18

Please indicate who answered the questions in this questionnaire: Patient alone Patient with help from a relative or friend Relative or friend on behalf of patient Other please state The 12 month and 24 month research outcome assessments will be conducted by telephone interview with a researcher based in the study co-ordinating centre at Newcastle University. A telephone interview will not be possible for some patients due to the effects of their stroke or other problems. Is this patient (with assistance from their carer if appropriate) likely to be able to take part in a telephone assessment? No Yes If NO, please give a reason If YES, what is their preferred time of contact by the researcher for research assessments? Morning Afternoon Evening No preference If NO, is the patient (with assistance from their carer if appropriate) likely to be able to complete a postal questionnaire? No Yes (if neither a telephone interview or postal questionnaire are possible, the co-ordinating centre will arrange a face to face assessment). Patient V5: 11 February 2014 Page 17 of 18

If this patient has a relative or friend who is providing support (carer), she/he should be invited to take part in. Please give him/her a carer invitation letter, carer information sheet, carer baseline questionnaire and pre-paid envelope. This carer paper work can also be left with the consented patient (should the relative or friend not be available), or posted to the relative or friend. Has a carer been identified and paperwork given/left/posted: Yes No If no, please give reason: The patient baseline assessment is complete. Please now: 1. Randomise the patient into the trial. Advise the patient about which study group they have been allocated to. 2. Enter the patient data on to the study electronic database. 3. File this paper record in the study investigator site file. Thank you for your contribution to the trial. Contact for further information: If you have any queries or require further information about the trial please contact: Stroke Research Group Institute for Ageing & Health Newcastle University 3-4 Claremont Terrace Newcastle NE2 4AE Tel: 0191 208 6779 Patient V5: 11 February 2014 Page 18 of 18