Efficient development and usability testing of decision support interventions for older women with breast cancer

Figures & data

Figure 1 Schematic representation of the primary endocrine therapy /surgery+ endocrine therapy DESI development process.

Note: Images reproduced with permission from the University of Sheffield.
Abbreviations: DESI, decision support intervention; FAQs, frequently asked questions.

Figure 2 Primary endocrine therapy /surgery+endocrine therapy DESI content.

Note: Reproduced with permission from the University of Sheffield.
Abbreviation: DESI, decision support intervention.

Figure 3 Chemotherapy DESI content.

Note: Reproduced with permission from the University of Sheffield.
Abbreviation: DESI, decision support intervention.

Table 1 Interview transcript coding framework

Primary code	Secondary code
Brief decision aid	Layout/ease of use (usability)
	Useful content (usability)
	Understanding (accessibility)
	Information amount
	Questions
	Improvements
Booklet	Layout/ease of use (usability)
	Useful content (usability)
	Understanding (accessibility)
	Information amount
	Questions
	Values clarification exercise
	Other sections
	Improvements
Implementation	Usefulness (utility)
	Practicalities
	Usagea
Other	Personal experiencesb
	Cancer diagnosisb,c
	Decisionb
	Follow-up careb,c
	Questionb
	Referenceb
	Miscellaneousb
	General comment on DESI

Notes:

a Patients facing the decision only.

b Shows codes not used for presented analysis.

c Patients only.

Abbreviations: DESI, decision support intervention.

Table 2 Example quotes for the main findings

Primary code	Secondary code	Example quotes	Text reference
Primary endocrine therapy /surgery+endocrine therapy brief decision aid and booklet	Understanding	“… it was really in layman’s terms, you didn’t have to know anything about medicine or medical matters, it was all put down to you in a very, you know, very straightforward way …” DESI-S-Bo-SFT	A
		[Referring to diagram of cancer lump and lymph nodes] “It’s all over the flaming place isn’t it? Look at that, lymph node, gee by gum, yes that is pretty bad that. […] It grows away from the cancer doesn’t it, going to the nodes and into your arm? […] That makes it look as if it’s where the cancer is.” DESI-S-Bo-SFT	B
		[Referring to the chances of the breast cancer coming back] “… its 20 in 100 women after 1 to 3 years in the hormone blocking. 10 in 100 –10% over the lifetime time so if a person wanted to know what would be my risks of getting it in the first few years of either treatment – if it’s possible to answer that …” DESI-S-Br-SUT	C
	Improvements	“… is there a difference in how long I will live – does that mean if you don’t have treatment? […] no difference to what? […] that’s not very clear. […] there has to be an ‘if’ in it somewhere.” Interviewer: “yes so if – is there a difference in how long I will live if I take the tablets or if I […] have the surgery and the tablets.” Participant: “yes” DESI-S-Br-SUT	D
		“ ‘Usually women notice the swelling because their arm feels heavier or rings and clothes seem’ […] Your clothes seem tighter, I wouldn’t have thought, your sleeves might (seem) tighter, but not all your clothes, surely.” DESI-S-Bo-SFT	E
Chemotherapy brief decision aid and booklet	Understanding	“… I found page 5 in the booklet thoroughly confusing … because I felt it came in very early in the booklet and it, for a person, an older person to try to take in all that information, I found more confusing than …” DESI-C-Bo-CUT	F
		“I found the numbers, the ratio of the numbers of me living longer … or even surviving … seemed very small … [separate quote] it’s been scare … a bit scare … it’s been frightening … reading, reading what your chances are … […] it looks as though I’ve got like a 1 in a 5 chance…” DESI-C-Bo-CFT	G
	Layout	“… it was nice to have photographs in and I thought they were perfectly alright. And 1 or 2 of them were quite nice, there’s a nice one on page 19, I was just looking at it now. You feel as if the nurse and the patient are very much on the same wave length that’s very nice and I think anything like that is, that’s particularly good.” DESI-C-Bo-CUT	H
	Improvements	“I mean the other thing is you probably would have to have it in, in different languages wouldn’t you?” DESI-C-CFT	I
Primary endocrine therapy /surgery+endocrine therapy booklet	Values clarification exercise	“I didn’t (look at) this page to be honest. I suppose it’s because I’d spoken to [name], that probably did that you see.” DESI-S-Bo-SFT	J
Implementation	Usefulness	“… they can go home and look through the booklet, they can write down what they want to ask you because I think like when you go to the doctor you need to write down what you want to say because when you get there you’ve forgotten all what you wanted to say to them.” DESI-S-Bo-SUT	K
		Interviewer: “How do you think women might find this if they did have breast cancer, when they were thinking about their decisions and treatments options?” Participant: “I think they would probably find it helpful but they’d need to have, it’s not helpful just on its own, it needs to have someone that you’re able to discuss it with.” DESI-C-Bo-CUT	L
		“I wish, when they diagnosed me and everything, I wish I’d had a book like this to read.” DESI-S-Bo-SFT	M
		“ ‘Is there an option, difference between the options in how long I will’ and I thought if I don’t have chemo I might die if it hasn’t all gone and reading that I thought well I have done the right thing, I’ve had chemo and if there’s anything there its, it’s made me decide...if I hadn’t have had it...[…]...I would have chosen to have it... [separate quote] … it help me cope because I knew I’d do, done right thing.” DESI-C-CFT	N
	Usagea	“My daughter wrote in it for me, things I had to remember to ask. […] I had to remember to ask them when I went before I decided. We sat and we discussed it.” DESI-S-Bo-SFT	O

Note:

a Patients facing the decision only.

Abbreviations: Bo, booklet; Br, brief decision aid; CFT, chemotherapy field testing (patients); CUT, chemotherapy user testing (healthy volunteers); DESI, decision support intervention; DESI-C, chemotherapy DESI; DESI-S, primary endocrine therapy /surgery+endocrine therapy DESI; SFT, primary endocrine therapy /surgery+endocrine therapy field testing (patients); SUT, primary endocrine therapy /surgery+endocrine therapy user testing (healthy volunteers).

Figure 4 Values clarification exercise in primary endocrine therapy /surgery+endocrine therapy booklet.

Note: Reproduced with permission from the University of Sheffield.