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Assessing the impact of long term COVID-19

Aimed at capturing and sharing information from around our world, about the effects of this illness, on those who have lived with it longer than initially anticipated. "Sharing" first and most importantly with the patients themselves. Responses provided are anonymous so that "sharing" may also include any and all who have the intention of contributing to healing those with this illness. More is known at present than months ago. It is less "novel," but much about this illness is different, and much remains unknown. Hopefully, responses here will help to usefully fill the void that remains while encouraging compassionate care.

Your answers will serve :

- to add clarity to your own thoughts about this illness
- to allow comparisons with others who have this illness
- to provide insights for those who are faced with the task of curing this illness
- to gather together in one place, through your responses, what is known
- to give those affected with this illness a timeline for recovery
- to suggest what is still unknown, and serve as an incentive to further learning
- to provide clues as to what works to move all who are ill towards recovery.

Respondents so far have taken between 11 and 29 minutes to complete this.

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* 1. Your Date of Birth (DD/MM/YYYY)

Date

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* 2. Your age group

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* 3. Provide a date for when you think this illness began

Date

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* 4. Primary language spoken

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* 5. Gender

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* 6. Race (notice 1 unusual response option)

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* 7. Height in cm (1 inch = 2.54 cm)
Example: if 5ft 4inches = 64 inches x 2.54 =  162.6 cm

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* 8. Weight, before illness began, in Kg (1kg=2.2lb = 0.1575 stone)
Example: 140 lbs / 2.2 = 63.6 Kg
Example: 8.5 stone / 0.1575 = 53.97 Kg
Please add the units to confirm it's a Kg weight. Like this: "110 Kg" or if its not, "110 lbs" to help avoid confusion.

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* 9. Weight today, in kilograms (1kg=2.2lb = 0.1575 stone)
Take wt in lbs and divide by 2.2. Enter that result.
Take wt in stone, and divide by 0.1575. Enter that result, again with the Kg unit unless it's not. Example: "74.5Kg".

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* 10. Today's date

Date

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* 11. Pre-illness Social roles: Select all that are appropriate

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* 12. Smoking history : multiply the number of cigarette packs per day, times the years you have smoked this amount (called pack-years)

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* 13. Before becoming ill, how many different prescribed medications did you take each day?

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* 14. At the present time, how many prescription medications are you taking each day?

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* 15. How many additional treatments (osteopathic, homeopathic, acupuncture, holistic) are you taking each day ?

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* 16. Before getting sick with COVID-19
(check those that apply):

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* 17. You take medications based on (check all that apply)

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* 18. Do or did you take any of these medications as part of your COVID-19 therapy? (Check all that apply)

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* 19. Here are some date questions that you may know exactly, or may require an estimate.  Now that you have been ill with this, what date would you give for when you first became ill? (This is your estimate of the start. Probably not the date when you were told you had COVID-19 by a doctor or someone else). Enter your 'illness started on ...' date below.

Date

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* 20. On what date were you diagnosed and told you had this illness? (This is likely after your date for when your illness began, which you gave above. When were you told, "...you have COVID-19.")?

Date

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* 21. If you were hospitalized for this illness, for how many days? (If never hospitalized with COVID-19, enter a "0.")

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* 22. If you started to feel better, when was that? If not feeling better yet, leave blank (and stay hopeful !).

Date

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* 23. If you started to feel worse again, after feeling better, when was that? (or leave blank)

Date

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* 24. We'll use the dates you've entered to do some calculations later. But tell us your best estimate now, of the number of weeks you have been ill with COVID-19. (Just enter a number without any label).

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* 25. If this is now a thing of the past for you, pick a date when you were back to normal or pretty close. If not feeling better yet, leave blank (and stay hopeful !).

Date

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* 26. Select all Tests that diagnosed COVID-19 (that were positive)

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* 27. Just to confirm: Tests you had, but were negative for the viral illness or felt to be negative:

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* 28. Pick what best summarizes how severely ill you have been. Each may not be a perfect fit for you. Pick the closest:

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* 29. Breathing issues are pretty frequent for COVID-19 patients. Which of the following have you noticed at times? (Select all that apply)

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* 30. A typical day at present includes:
(select all that seem to fit)

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* 31. Before getting COVID-19, how was your health? Did you have ...

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* 32. Since becoming ill, are you more attuned than before to changes in your physical condition and events?

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* 33. How & where did you catch this viral illness?

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* 34. If quarantined, where?

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* 35. If quarantined, for how long ?

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* 36. If quarantined, how difficult was that?

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* 37. We use the same symptom list for this question and following 3 questions. Don't get hung up. Move through and check to indicate 'Yes' or don't, and pass to the next item.
BEFORE you developed COVID-19, did you commonly have ... (Select all that apply. Most here may be negative.)

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* 38. We use the same symptom list for this question as  the one before. 
In the FIRST (3 to 7) DAYS as you developed COVID-19, did you discover that you had ... (Select all that apply.)

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* 39. Again, the same symptom list for this question as  the one before. 
During most of the time that this illness lasted, what symptoms seemed to persist ? ... (Select all that apply.)

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* 40. Final use: symptom list for this question as  the one before. 
What are your symptoms still present NOW, ... yesterday, today, this week.  ? ... (Select all that apply.)

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* 41. As we just saw, this illness can have an effect on many parts of the body. We group those as "organ systems" to summarize them more easily. Which organ systems have been involved during your illness with COVID-19? If you had them only before COVID-19, don't pick them. Pick those that appeared throughout this period of illness.

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* 42. No one likes to feel limited physically or mentally. There is no illness of the body, that is without emotional, mental, spiritual components. It is a unified system. Some days, some parts are more broken than others. How would you describe the balance of those components in you today?  First, today, how physically limited do you find yourself?

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* 43. There is no illness of the body, that is without emotional, mental, spiritual components. And if one has a reason to become depressed or anxious, our body reacts. It is a unified system. Some days, some parts are more broken than others and that varies from one day to the next. 

How would you describe the balance of those components in you today?  Where are you focused ?

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* 44. We listed above, symptoms and findings, most of which were physical. Now we list those that are thought of as "emotional" or psychologic. 

Throughout your illness with COVID-19, which of these have you experienced ? (Select all that apply)

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* 45. Finding effective sources of emotional support during this illness is essential.
Rate the effectiveness and importance for you of the following sources of support. 
To answer, slide the ball on the slider from left to right and place it at the point you think best captures your answer.

First, your family and loved ones.
Use the slider below, and place it where you think it should be.

0 - Not at all effective 5 - Marginally or Somewhat effective 10 - Very effective
Clear
i We adjusted the number you entered based on the slider’s scale.

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* 46. Finding effective sources of emotional support during this illness is essential.
Rate the effectiveness and importance for you of your healthcare provider(s). 
To answer, slide the ball on the slider and place it at the point you think best captures your answer.

0 - Not at all effective 5 - Marginally or Somewhat effective 10 - Very effective
Clear
i We adjusted the number you entered based on the slider’s scale.

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* 47. Finding effective sources of emotional support during this illness is essential.
Rate the effectiveness and importance for you of your therapist, or person serving as your therapist. If you don't have such a support, leave the slider as it is.
To answer, slide the ball on the slider and place it at the point you think best captures your answer.

0 - Not at all effective 5 - Marginally or Somewhat effective 10 - Very effective
Clear
i We adjusted the number you entered based on the slider’s scale.

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* 48. Next to last question on sources of emotional support during this illness.
Rate the effectiveness and importance for you of online contacts and groups. If you don't have such a support, leave the slider as it is.
To answer, slide the ball on the slider towards the right, and place it at the point you think best captures your answer.

0 - Not at all effective 5 - Marginally or Somewhat effective 10 - Very effective
Clear
i We adjusted the number you entered based on the slider’s scale.

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* 49. Sources of emotional support during this illness: last question.
Rate the effectiveness and importance for you of  personal habits, hobbies, practices.
To answer, slide the ball on the slider towards the right, and place it at the point you think best captures your answer.

0 - Not at all effective 5 - Marginally or Somewhat effective 10 - Very effective
Clear
i We adjusted the number you entered based on the slider’s scale.

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* 50. Assess the response from family members to your illness. (Select all that apply).

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* 51. Assess the response from employers to your illness. (Select all that apply).

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* 52. The goal of a healthcare system is to relieve suffering and heal the sick when possible.

In your contacts with such a system, what response(s) did you obtain in this illness without a specific cure: (summarize contact(s) with physicians, nurses, technicians, administration)

Assess the response from heath-care providers to your illness. (Select all that apply).

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* 53. A sense of one's quality of life depends on many parameters. If a pessimist, one might say life consists in finding food, eating, and avoiding being eaten. And that all the rest is just myth.
While yes, quality of life depends on nutrition, it also is determined by family dynamics and size, health, sanitation, air and water quality, education, family income, physical and financial security and saving for the future. 
 
In your case, after viewing these contributors to quality of life, how complete was your life before COVID-19?

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* 54. We place the same terms here as a reminder as you chose your answer. QoL determinants = nutrition, family dynamics and size, health, sanitation, air and water quality, education, family income, physical and financial security and saving for the future. 
The impact of COVID-19 on your health, is very probably a contributor to a reduced QoL at this time. 
Try to use the same scale to give your assessment of this impact of your illness on your Quality of Life today.

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* 55. From where you view your world and circumstances today, is their hope for the future?
Assuming these same determinants of Quality of Life, try to estimate where yours should be in 1 year.

Here again is a reminder as you chose your answer. QoL determinants = nutrition, family dynamics and size, health, sanitation, air and water quality, education, family income, physical and financial security and saving for the future.

In your case, after viewing a final time these contributors to quality of life, in 1 year from now, what do you anticipate after this time of illness with COVID-19?

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* 56. This particular viral illness, at whatever level of severity, is potentially likely to be traumatic and possibly tragic.

In response, if one is to recover one's individual humanity, that requires resilience.

It requires an ability to adapt. If you are currently still just getting through it, you will likely one day look back. And with an eye towards this period of illness to assess what you did, the skills you developed, and how well they served you for self care. They might serve again if the lessons were learned. A blend of grit, hardness, optimism, mindfulness, asking for help when needed, and living towards a goal may contribute to survival but also resilience. Bending before breaking.

How well have you maintained and improved your resilience?

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* 57. An easy one. What country are you in as you respond?

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* 58. Time now to listen to you directly. To hear your new found expertise with COVID-19.

If you could offer a few words of advice to those who like you, have the COVID-19 illness and had to deal with it, what advice would you give to help them get through?

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* 59. Time now to listen to you directly. To hear your new found expertise with COVID-19.

If you could offer a few words of advice to those from whom you sought care during this illness, what would you say?
 

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* 60. No more questions ! But a comment.
First, thank you so much for your time, effort, and willingness to share. It's a long questionnaire. Since you got to Q60, Good Show ! You understand compassion, which is doing for others what they can't do alone. Couldn't have done this without you!

Secondly, and completely up to you : Results will be posted on our site. After you answer the last question, you will see all the results here. But if, and only if you feel comfortable doing it, leave us an email address and we'll send out your copy of everyone's responses once collected.

If not comfortable with leaving contact info., or don't want the questionnaire's results, leave this blank. Perfect for us.

Third, you can also leave a name, or a pseudonym, or a number you make up, and we'll send you a heartfelt thank you note. 

NONE of that info will be shared with anyone else. Period.
You decide. If not here in the Questionnaire itself, you can send these separately to questionnaire@callingcovid.com   We'll write back ASAP with something like: "Dearest Number 4896557. Thanks so much, and here's the answer to your question."

Do as your intuition tells you to do.

T