Table 5

Preference comments made by patients

Categories of reply from those patients who would prefer not to hold their own record (n=180)Intervention (n=81)Control (n=99)
Booklet not useful1217
Keeping booklets would be/was burdensome14 7
Satisfied with current/traditional system 516
Felt able/prefer to talk to healthcare staff 218
Stable condition, nothing to write 7 7
Booklet good for other people but not for the respondent11 2
Not wanted to bother healthcare staff/seemed busy or not interested10 1
Booklet would be/was unwelcome reminder of illness 4 5
Prefer to leave it to healthcare staff 3 4
Too much paperwork 1 2
Forgot/did not use/lost booklet during study17 0
Not felt able to remember or update booklet 014
Booklet outgrew its usefulness 7 0
Booklet was for the healthcare staff 2 0
Wanted to keep information private 0 2
Booklet could cause confusion 0 2
Patient already kept some form of record 0 1
Categories of reply from those who would prefer to have their own record (n=164)Intervention (n=91)Control (n=73)
Booklet helped as a general aide memoire2414
Track what happened and monitored progress1315
Prepared for sessions with healthcare staff (reminder of what to ask/tell health care staff)1011
Informed healthcare staff of what happened 9 7
Booklet helped patients to understand illness/treatment 411
Expressed/managed feelings 7 4
Booklet would be/was a good idea 6 4
Booklet good for respondent but not good for some people 6 4
Felt more in control 2 5
Patient already kept some form of record 1 5
Booklet would be/was helpful 4 1
Patient should be offered choice of having booklet 1 3
Booklet good for other people but not for respondent 2 1
Booklet helpful at certain stage of illness/treatment 6 0
Forget or feel difficult to ask healthcare staff to write in booklet 6 0
Booklet would help to cope with memory loss/bad memory 0 5
Health care staff were interested 4 0
Booklet not harmful/did not really mind using booklet 4 0
Stable condition, nothing to write about 2 0
Booklet outgrew usefulness 1 0
Booklet would be/was unwelcome reminder of illness 1 0
Forget or did not use the booklet in the study 1 0