Unique ID
Baseline (2012) sample - exclusions
Follow-up (2013) sample - exclusions
A1. Sex of person affected
age at 2012 return - CORRECTED
A3. Relationship TO person affected
A4.Co-resident with PA?
A2.Co-resident with PA in 2013?
A5a. Number of adults in household
A5b. Number of children in household
A3a.Number of adults in household 2013
A3b.Number of children in household 2013 (Cleaned)
A6. Frequency of contact
A4.Frequency of contact (2013)
dA7.Time since diagnosis (formatted)
A8a. EQ-5D-5L mobility for person affected (proxy)
A8b. EQ-5D-5L self-care for person affected (proxy)
A8c. EQ-5D-5L usual activities for person affected (proxy)
A8d. EQ-5D-5L pain/discomfort for person affected (proxy)
A8e. EQ-5D-5L anxiety/depression for person affected (proxy)
A8. EQ-5D index score (PA)
A9a. EQ-5D-5L mobility for person affected (proxy) 2013
A9b. EQ-5D-5L self-care for person affected (proxy) 2013
A9c. EQ-5D-5L usual activities for person affected (proxy) 2013
A9d. EQ-5D-5L pain for person affected (proxy) 2013
A9e. EQ-5D-5L anxiety/depression for person affected (proxy) 2013
A9. EQ5D index PA 2013
dA9. Eq-vas (PA) (formatted)
A10. EQ-VAS for person affected (proxy) 2013
A10. Health of person affected compared to 12 months ago (proxy)
A11. Health of PA now, compared to 12 months ago?
A11a. Behavioural, psychological or emotional problems for person affected
A11b. Mild/moderate lernaing difficulties
A11c. Severe learning difficulties
A11d. Speech/language problems
A11e. Hearing loss in one ear
A11f. Hearing loss in both ears
A11g. Sight loss
A11h. Visual impairment (other than sight loss)
A11j. Seizures or fits
A11k. Hydrocephalus (water on brain)
A11l. Hypotonia (reduced muscle tone)
A11m. Motor deficits
A11n. Incontinence
A11o. Balance problems
A11p. Pain (even after taking medication)
A11q. Amputations
A11r. Scarring/tissue damage
A11s. Abnormal bone growth
A11t. Arthritis/severe joint/limb pain
A11u. Kidney damage
A11v. Other after effect(s)
da11. After-effects (dubious removed)
A12a. Change in BPE after effects?
A12b. Change in mild learning disabilities?
A12c. Change in severe learning disabilities?
A12d. Change in migraines/headaches?
A12e. Change in memory loss?
A12f. Change in speech/language problems?
A12g. Change in unilateral hearing loss?
A12h. Change in bilateral hearing loss?
A12i. Change in sight loss?
A12j. Change in visual impairment?
A12k. Change in seizures/fits?
A12l. Change in hydrocephalus?
A12m. Change in hypotonia?
A12n. Change in motor deficits?
A12o. Change in incontinence?
A12p. Change in balance problems?
A12q. Change in pain?
A12r. Change in amputations?
A12s. Change in scarring/tissue damage?
A12t. Change in abnormal bone growth?
A12u. Change in arthritis or severe joint/limb pain??
A12v. Change in kidney damage?
A12w. Change in other after-effects?
A12x. Description of other after-effects
A12. Meningitis or septicaemia?
A13.recleaned bug
MenB infection [Der (bugc2) - PA - 2012]
A14. Others in family contracted meningitis/septicaemia?
A15. Has PA visited GP in relation to their own health in last 12 months?
A16. Has PA been an outpatient/daypatient/in casualty in last 12 months?
A17. Has PA been a hospital inpatient overnight or longer in last 12 months?
A18a. Responsible for PA at the moment?
A18b. Other family responsible for PA at the moment?
A18c. Others responsible for PA at the moment?
A18d. They're responsible at the moment?
A18e. The govenment/organisations are responsible at the moment?
B1. ADL assistance hrs/week (men)
B1. Organisational support hrs/week (men)
B1. Extra household activity hrs/week (men)
B1. Other care actvitiy hrs/week (men)
B1a. ADL hours/week 2013?
B1b. Organisational support hrs/week (2013)?
B1c. Extra housework hrs/week (2013)?
B1d. Other care activity hrs/week (2013)?
dB1. Total care hours
Informal carer?
B2. Provide daily care?
B2. Provide daily care (2013)?
B3. Provide majority of care?
B3. Responsible for care?
B3. Make decisions about PA's care?
B3. Closest person to PA?
B4. Constant day-time supervision?
B5. Other caregivers?
B3a. Other carer present (2013)?
B5. Hrs/week from relatives
B5. Hrs/week from friends
B5. Hrs/week from paid carers
B3b. Relatives' care hrs/week (2013)?
B3c. Friends' care hrs/week (2013)?
B3d. Paid care hrs/week (2013)?
B6. Main carer?
B7. Change in care (12 months)
B8. Change in care (beginning)
B9. Changes in amount of care
B9. Changes in tasks
B9. Changes in caring role
B9. Changes in effort/difficulty of care
B10. Options at outset of care
B11. Most suitable person to care
B11. Duty to provide care
B11. No-one else to care
B11. No money for care
B11. No options (other reason)
B12. Ongoing concerns over PA health
B12. Ongoing concerns over PA development
B12. Ongoing concerns about care (self)
B12. Ongoing concerns about care needs from others
B12. Ongoing concerns about costs of care
B12. Other ongoing concerns
B13. Self-rated burden
B4. Self-rated burden (strain) from caring (2013)?
B14. CES Activities
B14. CES Support
B14. CES Assistance
B14. CES Fulfilment
B14. CES Control
B14. CES Getting-on
C1. Sex of family member (respondent)
C2. Age of family member (respondent)
C3. Ethnicity of family member (respondent)
C4. Education (FM/respondent)
B5a. Gave up work in last 12 months (2013)?
B5b. Gave up work prior to 12 months ago (2013)?
B5c. Took time off work in last 12 months?
B5d. Took time off work prior to last 12 months?
B5e. Reduced working hours in last 12 months?
B5f. Reduced working hours prior to last 12 months?
B5g. Missed promotion/opportunities in last 12 months?
B5h. Missed promotion/opportunities prior to last 12 months?
B5i. Took more flexible job in last 12 months?
B5j. Took more flexible job prior to last 12 months?
C5. Employed (>30hrs/week)
C5. Employed (<30hrs/week)
C5. Voluntary work
C5. Look after home/family
C5. Full-time carer
C5. Wholly retired
C5. Unemployed and available
C5. Self-employed
C5. Permanently sick/disabled
C5. Full-time education
B6a. Employed (>30hrs/week)?
B6b. Employed (<30hrs/week)?
B6c. Voluntary work?
B6d. Look after home & family?
B6e. Full-time carer?
B6f. Wholly retired from work?
B6g. Unemployed (and available)?
B6h. Self-employed?
B6i. sick or disabled?
B6j. In full-time education?
C6. Mobility (FM) EQ5D5L
C6. Self-care (FM) EQ5D5L
C6. Usual activities (FM) EQ5D5L
C6. Pain/discomfort (FM) EQ5D5L
C6. Anxiety/depression (FM) EQ5D5L
C6. EQ-5D index score (network member)
B7a. EQ-5D-5L mobility (FM, 2013)
B7b. EQ-5D-5L self-care (FM, 2013)
B7c. EQ-5D-5L usual activities (FM, 2013)
B7d. EQ-5D-5L pain (FM, 2013)
B7e. EQ-5D-5L anxiety/depress (FM, 2013)
B7. EQ5D index FM 2013
C7. Health rating scale score (FM)
B8. EQVAS FM (2013)
C8. General health (SF12 FM)
B9. General health - FM (SF-12 2013)
C9. Health limits moderate activities (SF12 FM)
C9. Health limits stair-climbing (SF12 FM)
C10. Accomplish less because of physical health (SF12 FM)
C10. Physical health limits kind of actvities (SF12 FM)
C11. Accomplish less because of emotional health (SF12 FM)
C11. Emotional health limits kind of actvities (SF12 FM)
C12. Pain interferes with work (SF12 FM)
C13. Calm/peaceful (SF12 FM)
C13. A lot of energy (SF12 FM)
C13. Downhearted/low (SF12 FM)
C14. Health interferes with social activities (SF12 FM)
B10a. Health limits moderate activities - FM (SF12, 2013)
B10b. Health limits climbing stairs - FM (SF12, 2013)
B11a. Phys health limits accomplishment - FM (SF12, 2013)
B11b. Phys health limits kind of work/activities - FM (SF12, 2013)
B12a. Emotional health limits accomplishment - FM (SF12, 2013)
B12b. Emotional health care in work/activities  - FM (SF12, 2013)
B13. Pain interfered with work  - FM (SF12, 2013)
B14a. Felt calm/peaceful  - FM (SF12, 2013)
B14b. Had a lot of energy  - FM (SF12, 2013)
B14c. Felt downhearted/low  - FM (SF12, 2013)
B15. Health interfered with social activities  - FM (SF12, 2013)
C15. Health change last 12 months (SF12 FM)
B16. Health compared with 12 months ago  - FM (SF12, 2013)
C16. Happiness score
B20. How happy do you feel at the moment?
C17. Impact on stress/anxiety
C17. Impact on depression
C17. Impact on family/relationships
C17. Impact on social life
C17. Impact on finances
C17. Impact on work
C17. Impact on exercise
C17. Impact on physical health
C17. Impact on sleep
C18. View of own health
C19. Healthcare use
B17. FM visits to GP in last 12 months
B18. FM outpatient visit in last 12 months?
B19. FM inpatient visit in last 12 months?
B21. Feel unable to control important things in life (last month)?
B22. Feel confident about handling personal problems (last month)?
B23. Feel things were going your way (last month)?
B24. Feel difficulties couldn't be overcome (last month)?
B21-25 [Derived] Perceived Stress Scale score (0-16 max)
B25a. Able to be independent?
B25b. Am independent?
B25c. Able to achieve/progress?
B25d. Do achieve/progress?
B25e. Able to feel settled/secure?
B25f. Do feel settled/secure?
B25g. Able to have love, friendship and support?
B25h. Do have love, friendship and support?
B25i. Able to have enjoyment/pleasure?
B25j. Do have enjoyment/pleasure?
[D] NM1 or 2 (2012 FIM)
[D] Biological relation (FIM, 2012)
baseline questionnaire
followup questionnaire
predictive modelling sample
random number generated for sample split