9.
Comments made by patients at 3-month follow -upPatients were asked three open questions for comments on (a) things that they particularly liked about the booklet, (b) things they disliked, and (c) any comments made by others. Thirty-five percent (113) patients made positive and 12% (38) negative comments about the booklets. There was no difference between those with personal and general information, or those with or without anxiety management advice, in the number of positive or negative comments. Those whose booklets were produced automatically were more likely than those who chose their booklets interactively to make both positive (41% Vs 29%; 1df; c 2=5.4; p=0.02) and negative (16% Vs 8%, c 2=4.54, p=0.03) comments. Comments made by patients with personal information were more likely to mention the relevance of the information to them (41% Vs 15%; c 2= 9.3; 1df; p=0.002) (Table WE8.1).
The negative comments made by 38 (out of 325 people) were more varied (Table WE8.2). Seven people (including three with personal information) thought the information lacked relevance or wanted more personal information. Four with personal information said that there were mistakes or omissions. Twelve thought that more information (often on specific topics) was needed while two people (both in the automatic group) thought there was too much information. One person found the information frightening.
Eleven percent (35) people reported on the reactions and comments of others. Most said that others found the booklet informative or easy to read. Some were specific that it helped them understand, for example ‘My husband said it gave him a little more insight to my condition’, ‘My wife found the booklet very helpful to her and helped her to recognise different things and take them in her stride and to help me when I was feeling low’ and ‘I think with them reading the booklet it helped them understand what was happening to me and they were more understanding towards me’.
Positive Comments | Percent (number) making this type of comment | |
Intervention factor | All | |
Relevance to them (Examples) (1) Understood my cancer more. (2) The information was relevant to my illness. (3) The fact that it was undertaken so personally was reassuring to me. (4) All the details concerning my case highlighted areas that I had forgotten. Made me understand more about my cancer. Very informative. (5) Details of my particular cancer & what it means in black & white. Easy to understand. (6) Having relevant details of my particular cancer listed. Size, type etc. Gave me hope of a positive result. | Personal 41% (24) |
28% (32) |
General 15% (8) | ||
Generally positive (Examples) (1) Easy to understand; (2) How simple and straightforward it was to understand; (3) Its clarity; (4) Just finding out more info is a big help and another step to understanding the illness; (5) I found it very informative; The simplicity in obtaining basic info from the areas covered. Good basic info for patients who cannot obtain info from other sources; (6) Well produced. Easy to read. Clear typescript & illustrations. | Personal 59% (35) | 72% (81) |
General 85% (46) | ||
WE9.1 Percentage (number) of patients who made comments who made this type of comment, showing ‘personal’ and ‘general’ positive comments by ‘personal’ and ‘general’ intervention factors.
More information needed. (12 people)Examples: (1) Recommending potato skins without the caution about not eating greenish coloured skins that have toxic alkaloids. The "Lindane" pesticide is still on all UK root crops. It is being phased out because it causes cancer. Pts must to told to peel all root vegetables; (2) Not so much disliked but the recovery process could have been included; (3) A minor comment might be that it could say a bit more about post-treatment procedures - and possible post-treatment symptoms; (4) It did not have enough information on the after effects of Radio-Therapy I had quite a bad reaction - sore ribs, swelling, warts and especially my underarm skin turned black - I was expecting light peeling. I felt burnt. I'm still tender; (5) I wished I had more pages which came at the end of the computer selection, but I'd used up my quota; |
Repetitive, nothing new (1) If anything too long & a bit repetitive; (2) Duplication of information; (3) Having been given most forms from breast care nurses. They mostly coincided; (4) Most information already contained in pamphlets/literature supplied by hospital/clinics; (5) Lots of repetition; (6) It didn't tell me any more than Western/Beatson staff told me. |
Lack of personal information or relevance (7 people: 6/7 auto, 4/7 general)(1) I liked all the information in the booklet but I disliked the fact that personal information & details of my cancer were not included; (2) Not enough information on my particular case; (3) I was expecting it to be more individualised throughout booklet - I didn't feel that it was.; (4) Nothing relevant; (5) Seemed to target older people - I felt it was not about me; (6) I felt the booklet did not deal specifically enough with the lumpectomy operation (which relates to me) and I had to read through a lot of information about mastectomy; (7) Very dry and impersonal. |
Incorrect personal information (4 people all personal)(1) Information on medical history incomplete. Information on medical history over the last 7.5 years (pertaining to diagnosis & treatment) seriously incomplete. (2) Information incorrect about type of breast cancer. Lobular not ductal therefore contradicted what I had been told; (3) Personal Information: My GP is not and has never been Dr X of XXX Health Centre. It is Dr X of XXX Health Centre. (4) Information was not complete eg no reference to bone scan & MRI scan in investigations list. |
Timing, structure, process (6 people) (1) No page numbers & no contents page or index. I read the booklet in one go when I got it & found it helpful. Later I went back to check on something and could not find it easily. (2) Not being sure about what each section would cover when accessing the computer. I therefore received some information that I probably wouldn't have asked for & missed some that I may have wanted. (3) That you couldn't revise or add to the info after the first read through. (4) Can you number & content list (a very wee complaint). (5) Would have preferred this booklet sooner - possibly when starting chemo. (6) There always seemed to be another step required to get the full info: such as a phone call, which I found annoying/frustrating. |
Too much information (2 people: both automatic, general; AMA) (1) Other patients may find booklet intense; (2) Perhaps too much information. I needed some time to take it all in alternatively was selective in reading. |
Frightening (1 person: automatic, general, non AMA) (1) Some parts were a bit frightening, I would rather not have read them. |
WE9.2 Number of patients making different types of negative comment, showing intervention factors where some indication of a ‘trend’. (38 out of 325 patients made negative comments).