COVID-19 CLL and SLL survey
Survey v3
Please note - this survey is for UK residents only
Dear Supporter,

We need your help.

We are asking all UK CLL patients to complete this third version of the survey series please. The information you provide is vital to understand the impact that COVID-19 is having on our community

We are living in unprecedented times with the spread of COVID19. Our wonderful NHS, medical researchers and scientists are working flat out to cope with the impact and develop vaccines and treatments to defeat the new virus. We know some therapy studies have already started. As you will know, CLL patients are in the most vulnerable category and have to shield with the ensuing impact on family, friends and everyday life. Doctors have told us they would very much like to understand better how the virus is affecting our members.

How you can help

This is an initiative from the clinical community, and we have a unique opportunity to help medical professionals to understand the impact of the disease on CLL patients, their families and supporters and to provide invaluable research data with the intention of benefitting CLL patients.

What we would like you to do

We are inviting UK patients to complete this survey even if you filled one out before this new version of the survey will be left open for the foreseeable future. If you feel you have the virus we would particularly like your input, but the survey is open to all CLL and SLL patients.

Why is CLL Support and Leukaemia Care involved?

CLL Support and Leukaemia Care sit on the executive committee of the UK CLL Forum, the specialist umbrella organisation for CLL in the UK. Its aims are to bring together everyone with an interest in CLL and to bridge the gap between the clinical and scientific aspects of the disease. The Forum specialists are very keen for data on the impact of the virus on our community and have asked for our help. In conjunction with Leukaemia Care we have developed a survey to gather this data on their behalf.

How will this data be used?

This survey has been created by Leukaemia Care with CLL Support and the UK CLL Forum. Leukaemia Care is the data controller. Data collated from this survey will be shared with CLL Support and the UK CLL Forum but will not be used to send further marketing information to you. You will not be added to any databases of patients and if you wish to be placed on charity mailing lists, you will need to contact the charities involved directly.

In section 1, there is an option to submit your personal data. By submitting this data, you agree that you are happy to be further contacted about the contents of this survey ONLY. For more information about anything about this data collection, please email Nick.York@leukaemiacare.org.uk in the first instance.

We would be delighted if you feel able to help. Thank you.

Let’s fight this together.

Best wishes and stay safe


This is the third version of this survey. Have you completed either of our previous versions?
If you are willing to be contacted further as part of the survey to help profile COVID-19 and impact on CLL patients, please provide contact details below. If you do not wish to be contacted further, please ignore this section and proceed to question 1d.
1. Name/Initials
Your answer
1b. Contact email
Your answer
1c. Contact Telephone Number:
Your answer
1d: Hospital caring for you *
Your answer
1e: Hospital postcode (if you know it)
Your answer
1f: Consultant caring for you
Your answer
1g: Date survey completed (today's date) *
MM
/
DD
/
YYYY
1h: Your age as of today *
Your answer
Section 1: Shielding
2) Have you received communication (text or letter) from the Government or NHS to say you are vulnerable and at risk of severe illness if you catch coronavirus? *
3) Are you shielding? *
3a) If Yes, on what date did you begin to “shield”?
MM
/
DD
/
YYYY
4) On a scale of 1 to 10, with 1 being poorly informed and 10 being extremely informed, how informed do you feel about shielding?
5) If you are shielding, are you able to get food and/or prescriptions delivered to you?
6) If yes, who is helping you access these things? Tick all that are applicable
7) How many people are in the household with you “shielding”?
8) Are the other members of your household leaving the house? (e.g. to shop, work, exercise, recreation, school or socialise at a social distance)
8a) If you answered yes to the previous question: Have changes to Government guidance for your household members affected your ability to shield or be shielded? Please scale based on 1 with you being very unaffected by the changes to 10 you are highly affected by the changes.
9) Are you leaving the house for any reason?
9a) If yes, please explain for what purpose
10) If you initially shielded and now don’t, how did you come to that decision?
11) Have you had contact with your CLL care team since you went into shielding?
12) Please share any thoughts or concerns you have regarding the shielding process.
Your answer
Section 2: Covid-19 infection
13) Have you recently had symptoms suggestive of Coronavirus infection? *
13a) If Yes, on which date did these symptoms start?
MM
/
DD
/
YYYY
13b) Did you contact:
14) Have you had a Coronavirus swab taken? *
14a) If yes, what date was the swab taken?
MM
/
DD
/
YYYY
14b) What was the result? (If you have not yet received the results, please indicate this using the other option)
15) Has somebody you have shielded with recently had symptoms suggestive of Coronavirus infection?
Your understanding of recent government announcements
16) The UK government on Sunday 10th May changed the slogan for England to “Stay alert, Control the virus, Save lives'. Do you understand what the government means by “Stay alert”?
17) Do you understand what the government means by “Control the virus”
17a) Out of 1-10 with 1 being not at all clear and 10 being absolutely clear, how clear do you think this new government message is?
18) Scotland , Wales, and Northern Ireland governments are keeping the slogan "stay at home, protect the NHS, save lives". Do you prefer this slogan and strategy or the UK Government slogan and approach?
19) Have you read the UK Government COVID19 strategy document released on the 11th May?
20) ENGLAND Only: Overall, given the UK government announcement on 10th May and the COVID-19 strategy release, do you feel more or less reassured? Please score where 1 is not reassured at all and 10 is very reassured and 5 is neither.
21) The guidance states more support and resources will be made available to help the extremely vulnerable stay shielded. What extra resources and support would be of most help if you need to remain shielded for much longer?
22) ALL COUNTRIES - How do you currently feel about continuing to shield? Have recent government announcements changed your view?
23) Please score where 1 you feel less likely to continue to shield and 10 more likely to continue to shield
24) If your view on continuing to shield has changed please tell us why?
Your answer
Your healthcare
25) Are you: *
26) Are you on active treatment for your CLL at the moment? *
27) If post treatment , how long since treatment?
28) Did you have routine appointments with your haematology team (prior to COVID outbreak)? *
30) Have you seen any changes to your appointments since the outbreak? *
30b). If your appointment was changed in anyway, how was this news communicated to you?
31) If you've had an appointment during the outbreak, what format has this been in?
32) If you are in treatment currently or due to start having treatment in the next 3 months, have you been told of any changes to your treatment?
33) Has your treatment been disrupted/suspended as a result of your isolation or hospital visit changes?
34) If you have been informed that your treatment plan will change, what is the change expected to be?
35) Please share any other thoughts you have regarding potential changes to cancer treatment during the COVID-19 pandemic
Your answer
36) Did you receive the seasonal flu vaccine within the last 6 months? *
37) Do you have any other Health conditions such as?: *
Required
38) What sources of information have you used to find out potential changes to your treatment?
39) Do you normally receive immunoglobulin therapy? *
40) If yes, are you still able to access immunoglobulin therapy?
41) Do you receive intravenous or subcutaneous immunoglobulin?
42) Do you have antibiotics at home? *
43) Overall, how well supported do you feel you have been by the health care system including your CLL care team, GP, NHS 111 etc. Please score 1-10 (one being poor, 10 being excellent)
Financial implications during this pandemic
44) What was your employment status before the pandemic? *
45) Has your employment status changed as a result of coronavirus? *
46) If your employment status has changed, why was this?
47) If you are still working, where are you working from?
48) Have your finances been affected since the pandemic began? *
49) If your costs have increased, why have they increased?
50) If your costs have decreased, why have they decreased?
Section 4: your mental health and wellbeing
51) Do you feel you are coping well mentally and emotionally as a result of shielding against COVID-19?
52) What helps you cope mentally and emotionally? Tick all that apply
53) Have you sought any help specifically for your mental health at this time?
What worries you the most during this pandemic?
Please score each question from 1 - 10 (1 not worried to 10 very worried)
54) On a scale of 1 (lowest) -10 (highest) how worried are you about the Coronavirus outbreak? *
Lowest
Highest
55) On a scale of 1 (lowest) -10 (highest) how worried are you about your own health
56) On a scale of 1 (lowest) -10 (highest) how worried are you about your ongoing CLL treatment/wellbeing?
57) On a scale of 1 (lowest) -10 (highest) how worried are you about your partner or other people in the house shielding with you?
58) On a scale of 1 (lowest) -10 (highest), how worried are you about how they are coping?
59) On a scale of 1 (lowest) -10 (highest) how worried are you about the wellbeing of other family living outside the household e.g. children/grandchildren?
60) On a scale of 1 (lowest) -10 (highest) how worried are you about your work prospects after the pandemic has passed?
61) On a scale of 1 (lowest) -10 (highest) how worried are you about your families work prospects after the pandemic has passed?
62) On a scale of 1 (lowest) -10 (highest) how worried are you about financial matters e.g. money to live on, pay mortgage etc?
63) On a scale of 1 (lowest) -10 (highest) how worried are you about being able to access your CLL medications?
64) On a scale of 1 (lowest) -10 (highest) how worried are you about being able to access your medicines for other conditions eg for diabetes or hypertension etc.
65) On a scale of 1 (lowest) -10 (highest) how worried are you about being able to access food/other shopping e.g. getting slots for food deliveries etc
66) Are you having trouble sleeping at night
67) What resources are you using for information and support? *
Required
68) Is there anything else that the CLL Forum, CLL Support and Leukaemia Care to provide that would help you mentally and emotionally?
Your answer
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