Usefulness of calendar landmarking instruments
In more than half of the interviews the calendar landmarking instrument appeared to help participants recall the date of their first symptom onset and/or the date of the first GP consultation. It was useful in two key ways. First, interviewees used the calendar landmarking instrument as a prompt to their recall of events that had happened some months prior to their initial estimate of time of symptom onset. They used personal landmarks to pinpoint a time when a particular symptom had started, and often the interviewer’s role was mainly as facilitator – to listen and prompt further information as required.
I: So your first symptom was your shoulder pain, right shoulder pain, and that was in October/November `08?
R’s wife: It was probably there before that too ….
I: So maybe we’re looking at … just to pinpoint that first initial symptom…
R’s wife: Yes, so about May that year. No, you were driving the motor home at one stage…, we were going down for the kids’ birthdays in Bunbury and you said `oh, me shoulder’s annoying me’ and because it’s fairly heavy to drive and I know when I drive it I get sore shoulders, and whether that was the beginnings of it or not, that was February of that year. Yeah, `cause we used to go down there for the kids’ birthdays, `cause two of our grandchildren have birthdays a day apart down there.
I: So what days are those birthdays?
R’s wife: Eighteenth and 19th of February. …yeah but that sort of subsided and didn’t matter. We thought, oh well it was because he was driving. And of course that was way before….
[Australian patient, lung cancer]
Second, the interviewer used events from the calendar landmarking instrument to establish the date of first symptom onset. This could help interviewees refine a vague recollection such as `about summer last year’ to a specific range of days relating to a recalled event. The recalled event could be a national or international one:
R1: When did I go to the doctors? Two months ago?
I: Before Christmas then?
R2: Yeah, two or three months ago it was, but it was happening before that, long before that… So it was about summer last year.. when it started, yes.
I: Okay. So would that be before the August public holiday?
R2: It was before that, it was before August, it was during the kids’ school holidays…..
I: So was that before July? Before they went on holiday?
R1: Let’s say it happened at the World Cup finals.
I: World Cup, around there was it? The World Cup started in June.
R2: That would be about right because during the World Cup he was up and down going to the toilet and he missed part of the football, if you remember rightly.
R1: You have a better memory than I have pet!
[English patient, suspected colorectal cancer]
The recalled event could also be one of personal significance:
I: So, around May or June, were there any events’ that would be easy to remember?
R: Yes I, in fact I would say that it’s specifically June… because my daughter was admitted in April.. and was discharged on the same date.. that was this last.. you know.. Prime Minister debate thing.
I: Oh the General Election…
R: Yeah for the General Election.
I: So I think that was on the 6th of May.
R: Okay, 6th of May, yes. Then I think it was a week or two or three weeks after that that the Social Service lady visited us.. yeah it was around mid-May that [the] arrangement was made for me to be going to the charity to collect.. the food stuff…
I: And.. did the cold [and fever] start after that?
R: Yeah, in fact I can remember, it was one of the days that I was going to collect [the] food pack, ..that day in fact was the day I started feeling cold. Yes, yes, so I can’t tell you this specifically but normally it was on a Thursday that I used to go and collect that thing from the charity…..
[English patient, suspected lung cancer]
There were no instances where the use of the calendar landmarking instrument was actively unhelpful, resulting in either interviewer or respondent frustration or even termination of the interview. There were, however, examples of where the calendar landmarking instrument did not appear to help recall, see Table
2.
Table 2
Examples where calendar landmarking instrument did not facilitate recall
Australian patient, colorectal cancer | I: We’ve got some tools here to maybe help you remember. Was this last year? |
R: Yep. |
I: So that’s 2008. And We’ve got some events on this calendar that might help you remember when those symptoms first started. Was it winter or summer can you remember that sort of thing… |
R: You really don’t know how bad my memory is, do ya … um….I’ve really got no idea. |
I: Got no idea … birthdays … race rounds? Just roughly, when those symptoms started, [when] the bleeding first started. |
R: I’ve got no idea. Honestly, no idea. Nuh. |
Australian patient, breast cancer | I: Hopefully this will all make it a bit easier. We’ve got some dates down on the calendar there which uh, the idea is to try and help you remember what you were doing around these times… |
R: I’ve got no idea. Five days, yeah… my days blend in…I run my own business, I’ve got two teenaged girls….and you can forget it. |
English patient, suspected lung cancer | I: Do you remember exactly when it was when you went to see the doctor…? |
R: No. |
I: Was it before Christmas? |
R: Oh yes. |
I: I have here, it’s … a tool to help people remember, I don’t know how helpful it’s going to be. (Laughs) So it was before Christmas, was it after bonfire night, November was it? |
R: Yes. |
I: After bonfire night… after Armistice Day… no? |
R: I’m trying to think… It’s got to be November… I’m sorry, I really can’t remember. |
English patient, suspected lung cancer | I: So, do you think that was before Easter? |
R: When would it be? It’s not so long ago, is it? |
I: Was it before the Royal wedding? |
R: Well you see this’ these are the letters for the whole, when I was going to get… now that one was the 10th May. |
I: So is that before…? |
R: So it would have been before that, yeah.. Yes, so from… it would be the back end of um, it would be the back end of ah, ah, back end of um, April. |
I: Back end of April. So was that around all the public holidays and the Royal wedding and Easter? Does that ring a bell now that time? |
R: No, that’s the one…that’s the last [xray] that got took, that one. |
Factors affecting usefulness of calendar landmarking instruments
The time since symptom onset appeared to affect the usefulness of the calendar landmarking instruments in that they were used more often and added to the precision of dates where the time period between onset of symptoms and date of first consultation was less than three months. In contrast, the interviewee’s age, gender or cancer type did not appear to influence whether or not the calendar landmarking instrument facilitated recall; there were no instances where the use of the calendar landmarking instrument resulted in the disclosure of a new first symptom.
International events such as Christmas and New Year, and the public holidays in England, were the most useful `landmarks’, and personal events identified by interviewee, particularly family birthdays or holidays, were also frequently mentioned. Sporting events had some success as landmarks, including the international Olympic Games as well as a local horse race meeting in Australia. Unique events were also successful as landmarks: most noteworthy was the Royal Wedding in April 2011, and there were two interviewees who had been symptomatic for a while and who said the 2010 UK General Election was a helpful landmark. Interestingly, landmarks such as World War 2 anniversaries did not seem helpful for either the older or younger interviewees.
Where participants had existing chronic conditions, specifically where symptoms were of a similar nature such as chronic obstructive pulmonary disease and lung cancer, or benign prostatic hypertrophy and prostate cancer, we found that this could create difficulties when applying the instrument. It was difficult for these participants to characterise and disentangle their symptoms which prompted their decisions to seek help. During the interviews some participants had access to their own diary; in these instances they tended to prefer to use this rather than the calendar landmarking instrument to assist in their recall of events because they were so personalised already.