We are asking you the following questions because we would like to know the cost of your illness both to you, those looking after you and to society in general.
1. In the last 6 months, what face-to-face consultations have you had with these practitioners? (Number of contacts in last 6 months: CFS/ME related or Other reasons; Average duration of contact)
GP; Neurologist; Psychiatrist; Other doctor 1 (e.g. cardiologist); Other doctor 2 (e.g. dentist); Practice nurse; Pharmacist (for advice); Psychologist/therapist (other than in the PACE trial); Physiotherapist (other than in the PACE trial); Social worker; Community mental health worker; Acupuncturist; Osteopath; Homeopath/herbalist; Occupational therapist (other than in the PACE trial); Other (please state).
2. In the last 6 months have you spent time as a hospital inpatient? No/Yes
If yes: Give details of admission (hospital, reason, dates, days).
a) How many times have you been admitted to hospital and discharged in the same day?
3. In the last 6 months how many times have you attended A&E? a) What was the reason?
4. In the last 6 months, have you had any of the following investigations or diagnostic tests? (No/Yes; number of investigations/tests)
MRI; CT/CAT scan; Ultrasound; X-ray; EEG; Blood test; Other (please describe).
5. In the last 6 months, have you received help from friends or relatives on any of the following tasks, as a consequence of your fatigue? (No/Yes – Average number of hours help per week – Who provides this care? – Do they live in your house?)
Child care; Personal care (washing, dressing etc); Help in/around the house (cooking, cleaning etc); Help outside the home (shopping, transport etc); Other.
Total hours.
6. What was your employment status immediately before your illness started?
Employed full-time and working (1); Employed full-time but ‘off-sick’ (2); Employed part-time (3); Employed part-time but ‘off-sick’ (4); Unemployed (5); Self-employed and working (6); Self-employed but 'off-sick' (7); Retired (because of age) (8); Retired (because of ill health) (9); Student (10); Student but interrupted due to illness (11); Housewife/husband (12); Other (please specify) (13).
7. How many hours per week did you work at that time (if any)?
8. What is your current employment status? (same options as Q6).
9. If you are currently working, what is your current job title (if not, go to Q11)?
10. What are your current wages/salary before tax? Please indicate if this is: Weekly; Monthly; Annually
If the participant chooses not to give an answer, please use the prompt card to show income brackets, and record the letter that corresponds to the participant’s income.
11. What benefits (if any) do you currently receive?
Options: Income support (1); Incapacity Benefit (2); Disability Living Allowance - care component (3), - mobility component (4); Disabled Person's Tax Credit (5); Severe Disablement Allowance (6); Council Tax Benefit (7); Housing Benefit (8); Jobseeker's Allowance (9); Working Tax Credit (10); Statutory Sick Pay (11); State retirement pension (12); Other (please specify) (13)
12. Do you currently receive income protection benefit (income protection or total and permanent disability)? Yes/No
13. If yes, how much annually do you receive? £----
If the participant chooses not to give an answer, please use the prompt card to show income brackets, and record the letter that corresponds to the participant’s income.
14. Have you had to stop or reduce work/study due to your state of ill-health? Yes/No
15a. If yes: how many days in the last 6 months have you had off work/study because of your fatigue? (days) or
15b. How many fewer hours per week have you worked because of your fatigue? (hours)
16. Do you currently receive a private medical/retirement pension? Yes/No
17. If yes, how much weekly (or monthly, or annually) do you receive?(use prompt card if participant chooses not to give an answer)
18. In the past 6 months, have you received any one-off payments from income protection or insurance schemes as a result of your health? Yes/No
19. If yes, how much weekly (or monthly, or annually) do you receive? (use prompt card if participant chooses not to give an answer)
20. Are there any benefits that you don’t receive but which are currently under negotiation or in dispute? Yes/No
21. We are interested in all spells of employment that you have had in the past six months, if any. Please give details of all jobs you have had in the past six months.
Employment 1/2/3 – Occupation; Normal hours per week worked; Date started/finished; Reason for end of employment; How many days (including part days) did you take off due to fatigue?
22. If you are unemployed/retired: Do you intend to return to work? Yes/No
How long have you been unemployed/retired? Years – months.
