Privacy research

1 Processing of data from the questionnaire

1.1 Questionnaire

The questionnaire is a digital questionnaire. It is programmed and made available by the Erasmus Medical Center from the questionnaire software LimeSurvey.

1.2 Personal invitation to participate

To complete the questionnaire, each participant will receive a personal invitation link by email. This link will go to the email address that is included in the file in the personal online environment 'Solvio'. The link contains a key value (code) unique to each participant with a length of 32 characters. By using this key value, answers to the questionnaire cannot be traced back to the participant by others.

1.3 Completing the questionnaire

At the start of the questionnaire, a declaration of consent must be signed. Only with explicit consent will data be processed in the research. Consent can be withdrawn at any time.

1.4 Data storage

Data for which consent for processing has been given is stored on a server of the Erasmus MC. This data is coded with the key value unique to each participant. Direct personal data such as name and e-mail address are not processed in this. From this data storage, the Erasmus MC and C-support have access for use for scientific research. The data is subject to a storage period as explained in the introduction/consent of the questionnaire.

2 Processing of data for the personal overview

The personal overview shows a summary of the answers to the questionnaire, compared to the answers to the previous questionnaire.

2.1 Creating and uploading the personal overview

As soon as a participant completes a questionnaire, a personal overview is automatically created and uploaded to the file in the personal online environment 'Solvio'. This is done with a computer script. This script reads the questionnaire answers from the current questionnaire, the previous questionnaire, and from Solvio. Based on data from this, the personal overview is automatically created. This is then automatically uploaded to the file in Solvio. A confirmation message is also automatically sent to the e-mail address in Solvio.

2.2 Data in the personal overview

The personal overview shows data in 12 blocks. For this, data is processed from the questionnaires from research years 2022 and 2023. In addition, information from the file in Solvio is processed.

The following data is processed in the 12 blocks:

1. General Information

   • File number
     • Source: Solvio
     • Field: File ID
   • Name
     • Source: Solvio
     • Fields: initials, middle name(s), surname(s)
   • Gender
     • Source: Questionnaire 2022
     • Question: What is your gender?
   • Age
     • Source: Questionnaire 2022
     • Question: What is your age? (in years)
     • Calculation: Age 2023 = Age 2022 + 1
   • Completion date
     • Source: Questionnaire 2023
     • Field: Date of completion
   • First COVID infection
     • Source: Questionnaire 2022
     • Question: When were you first infected with COVID-1?
   • Time since first infection
     • Source: Questionnaire 2022
     • Question: When were you first infected with COVID-1?
     • Calculation: Difference in number of months between date of first infection and current date.
   • Degree of recovery
     • Source: Questionnaire 2022
     • Question: Please indicate to what extent you have recovered from your COVID-19 infection.
     • Question code: Recovery[SQ00]
   • Reinfected (last 12 months)
     • Source: Questionnaire 2023
     • Question: Have you been reinfected with COVID-12 in the past 19 months?
     • Question code: Beloop1
   • Relapse (last 12 months)
     • Source: Questionnaire 2023
     • Q: Approximately how many relapses have you had in the past 12 months?
     • Question code: Relapse2
   • Rehabilitation trajectory
     • Source: Questionnaire 2023
     • Question: You have used medical specialist rehabilitation. What type of rehabilitation was this?
     • Question code: Rehabilitation2[1], Rehabilitation2[2]
   • Hospitalization
     • Sources: Questionnaire 2022, questionnaire 2023
     • Question: Have you been hospitalized for your COVID-19 infection?
   • ICU admission
     • Sources: Questionnaire 2022, questionnaire 2023
     • Question: Have you been admitted to the Intensive Care (ICU) unit of the hospital due to COVID-19?
   • Rehabilitation trajectory
     • Source: Questionnaire 2023
     • Question: You have used medical specialist rehabilitation. What type of rehabilitation was this?

2. General health

   • Sources: Questionnaire 2022, questionnaire 2023
   • Question: We want to know how your health is today. Slide the box below to indicate how your health is today.

3. Top 5 health complaints

   • Sources: Questionnaire 2022, questionnaire 2023
   • Question: What health complaints have you experienced in the past 12 months due to Long COVID?

4. Fatigue

   • Sources: Questionnaire 2022, questionnaire 2023
   • Question: Using the statements below, we would like to get an impression of how you have felt over the past 2 weeks. The better the statement applies to you, the more you can move the check mark to the left towards "yes, that's right".

5. Mental well-being

   • Sources: Questionnaire 2022, questionnaire 2023
   • Question: How often during the past 2 weeks have you been bothered by one or more of the following problems? Check the box that applies to you.

6. Complaints after exertion

   • Source: Questionnaire 2023
   • Question: The following questions are about experiencing complaints after mental or physical exertion. Indicate for the following questions how often each complaint occurred and what the severity of this complaint was during the last 6 months.

7. Quality of life

   • Sources: Questionnaire 2022, questionnaire 2022
   • Question: The next module of the questionnaire is about your quality of life.

8. Roles in daily life

   • Sources: Questionnaire 2022, questionnaire 2023
   • Question: Can you indicate to what extent you currently fulfil roles in your life more or less due to Long COVID? Compare the current situation with the situation before you developed Long COVID symptoms.

9. energy level

   • Sources: Questionnaire 2022, questionnaire 2023
   • Question: What percentage of energy have you had on average over the past 2 weeks compared to just before your COVID-19 infection? Assume 100% before your COVID-19 infection.

10. Round 10 appointments with healthcare providers

    • Sources: Questionnaire 2023
    • Question: Which healthcare providers have you had contact with in the past 12 months for your Long COVID complaints? Multiple answers possible.

11. Influence on work/study

• Situation before COVID
  • • Source: Questionnaire 2023
    • Question: Did you have paid work just before your COVID-19 infection? Multiple answers possible.
• Situation now
  • • Source: Questionnaire 2023
    • Question: Do you currently have paid work? Check "yes, I am employed" if you have reported sick (partly) but are still employed by your employer. Multiple answers possible.
• Benefit now
• • • Source: Questionnaire 2023
    • Question:
      • Do you receive benefits in addition to your paid work?
      • Are you currently receiving benefits?

• Working hours per week before COVID
  • • • Source: Questionnaire 2023
      • Question: How many hours per week did you work on average just before your COVID-19 infection?
• Working hours per week now
  • • • Source: Questionnaire 2023
      • Question: How many hours per week do you currently work on average? If you are currently completely sick at home, enter 0 hours.
• Change due to COVID
  • • • Source: Questionnaire 2023
      • Q: Has the type of work you do changed due to Long COVID?
• Level of study now
  • • • Source: Questionnaire 2023
      • Question: What level of education are you currently following?
• Missed study time (last 12 months)
  • • • Source: Questionnaire 2023
      • Question: What percentage of your school/study have you missed due to your Long COVID symptoms in the past 12 months? Where 0% means that you have not missed any school/study and 100% means that you have missed all your school/study.
• Study delay (last 12 months)
  • • • Source: Questionnaire 2023
      • Question: How many months of study delay have you suffered in the past 12 months due to your Long COVID complaints?
• Remain seated (last 12 months)
• • • • Source: Questionnaire 2023
      • Question: Have you been sitting in your seat for the past 12 months due to your Long COVID symptoms?