Baseline characteristics
Participants included 24 males (60%); 26 participants (65.0%) had a TIA and 14 (35.0%) had a minor stroke diagnosis. Mean time from event onset to enrolment ranged from 15 days (Group 2) to 19 days (Group 1). Participants were aged 38–88 years; 67.5% (27/40) attained only high school level education; 57.5% (23/40) lived in the 50% most disadvantaged areas of Northern Ireland. Nine participants were ex-smokers; 11 currently smoked; and mean alcohol intake was <14 units/week.
Baseline distributions were similar across all groups for mean systolic blood pressure and diastolic blood pressure, waist circumference, and body mass index (BMI) (Table 1). For all groups, mean blood pressure was ≤140/90 mmHg; mean waist circumference and BMI reflected that most participants were overweight. Mediterranean diet scores were poor and mean total HADS were elevated, particularly for anxiety. Baseline IPAQ scores indicated that 21 participants (52.5%) were physically inactive, with 72.5% (29/40) reporting sitting for ≥5 hours daily. Accelerometer data were returned by all participants, but one dataset was excluded from analysis (<72 hours’ wear time). All groups showed similar sedentary time (approximately 20.5 hours/day).
Table 1. Comparison of baseline and post-intervention assessments for pilot study of a novel home-based prevention programme for patients after a TIA or minor stroke
Post-intervention results
Groups 2 and 3 showed greater improvements than Group 1 in mean BMI and waist circumference; in Mediterranean diet, IPAQ (International Physical Activity Questionnaire) (MET [metabolic equivalent of task] minutes/week and sitting time), HADS (Hospital Anxiety and Depression Scale, and EQ-5D-5L (quality of life) scores; and in a 2-minute walk test and timed ‘Up and Go’ test (TUGT) performance (Table 1). Mean daily pedometer step counts increased in Groups 2 and 3 (pedometers were not given to Group 1 participants). Three participants, all aged >80 years and frail, believed the pedometer under-counted their steps; five lost their pedometer; and one discontinued using it because of skin irritation. At follow-up, two accelerometers were lost in the post; and 37 returned valid data.
One participant who was a wheelchair user could not use a pedometer: their 2-minute walk test, timed ‘Up and Go’ test, and BMI were not measured. One stroke event occurred during follow-up in the control group. No adverse events were reported.
Qualitative results
Four participants (1 male, 3 female; 3 in Group 3; 1 in Group 2; age range 50–80 years) attended the focus group. Both stroke nurses (N) (female) were interviewed together.
Three main themes were uncovered as reported below with examples of anonymised supporting quotes.
Use of the manual
Participants and stroke nurses approved the manual, commending its physical dimensions and format:
‘So the size was nice, it was nice to handle, and it was very clearly written. There was good feedback from patients about the manual.’
(N1)
In particular, pictorial information was noted in terms of encouraging behaviour change:
‘The easiest thing for me was, with regards eating, the picture of the plate with the proportions you should have on it. So, for example, half your plate should be vegetables.’
(60-year-old male, group 2)
Some participants read it once; others re-read it after follow-up contacts:
‘I just read it as a one-off and … that was good enough for me … got an idea about diet and exercise, so the message was there.’
(60-year-old male, group 2)
‘When the nurses rang, I was like, oh, I better get the manual out again and read over those sections again.’
(83-year-old female, group 3)
Family members viewed it as a useful source for healthy living advice:
‘It works well when you read it and then discuss it with someone. She [the stroke nurse] could point out things … to pick up on.’
(57-year-old female, group 3)
‘Yes, my daughter too [read the manual] … she tried to help me with easy to make healthy food.’
(60-year-old male, group 2)
Study design
Participants identified no problems with the recruitment process and noted positively that participation provided the benefit of follow-up, which was unavailable within routine NHS care:
‘I thought that was a good thing … to have some aftercare.’
(60-year-old male, group 2)
‘I was really glad that there was something there as a back-up because I wasn’t sure about the medication.’
(78-year-old female, group 3)
‘I got quite a shock after my stroke … I was glad to have someone follow me up and to know if there is something I can do to avoid having another one.’
(83-year-old female, group 2)
The stroke nurses suggested that it would have been appropriate to include patients with cardioembolic and previous cerebrovascular events, as these were ‘two things which restricted our recruitment’.
Few patients were dissuaded by the logistics or challenges of travelling to the assessment centre (travel expenses were covered):
‘It maybe put off some of the more elderly participants, who didn’t have any transport.’
(N1)
‘The last time, it was bucketing [raining] … by the time I got home, I was drenched. So today I thought, I’ll take a taxi.’
(83-year-old female, group 2)
Conducting assessments in local hospitals was not considered a better option. Baseline assessment and individually tailored goals were regarded as key intervention components:
‘I think the actual meeting is more powerful than reading the manual. The other thing was, you know you’re coming back, so you have that accountability.’
(60-year-old male, group 2)
Participants recognised the standardised format of follow-up calls and perceived no differences between stroke nurse or GP delivery; follow-up facilitated compliance with the programme and, on average, lasted 5 minutes:
‘I don’t think it makes a difference if you’re followed up by a GP or stroke nurse because it’s all about the conversation and the questions you were asked.’
(57-year-old female, group 3)
‘It was motivating … someone was showing an interest in you.’
(60-year-old male, group 2)
Three telephone calls provided sufficient support and participants did not suggest any other format of follow-up.
Stroke nurses said they felt confident about delivering follow-up but commented that access to a patient’s electronic healthcare record would provide reassurance:
‘The thing which I found difficult was that we were phoning people “cold” if you like, there was no background.’
(N2)
Pedometers were valued for self-monitoring physical activity, although one participant considered that their measurement was unreliable.
Stroke nurses lacked confidence to address problems regarding pedometers but suggested this could be overcome with appropriate training:
‘I’m not too good with technology plus I hadn’t actually seen the pedometer’
(N2)
No issues regarding any assessment measurements were identified:
‘They were fine to do.’
(57-year-old female, group 3)
Suggested changes
All participants and stroke nurses were positive about the intervention and the study:
‘It was a very positive thing to be involved with, with lots of positive feedback from the patients.’
(N1)
One suggestion was to provide an option of using an electronic or paper version:
‘You would have to give people both options but, yes, it’s [an electronic version] a good idea.’
(N2)
Participants described persistent symptoms following their event, including increased anxiety and fatigue, shock following diagnosis, and worry about further events:
‘Anxiety, it’s definitely a factor after my stroke. Just worrying about stupid things, things which might never happen … if I try to do as much as I used to, then the next day I’m very tired. Is that part of the stroke?’
(83-year-old female, group 2)
Some reported difficulty with expressive language; others identified effects on memory or cognition:
‘One thing I found after my stroke, is struggling over words … I thought it would be better by now.’
(60-year-old female, group 3)
Participants suggested that the manual should include information about these problems. One patient commented that outcome measures could include an assessment of cognitive impairment; others suggested giving accelerometer feedback. It was also suggested that more open questions would encourage dialogue in follow-up and that patients should construct questions for subsequent contacts:
‘There were a few things that I would have liked to have been asked … Perhaps, say, before the next time … write down a few questions which you would like to ask me.’
(60-year-old male, group 2)
Adding a food diary was suggested, perhaps using smartphone apps, to emphasise patients’ ownership of their lifestyles:
‘You don’t know how bad your diet is until you write it down. I wouldn’t have thought I would eat more than three bars of chocolate a month but when it is written down, it’s more like 10 or 12.’
(57-year-old female, group 3)
‘I have an app … it tells you the calories and so on. It’s good for accountability.’
(60-year-old male, group 2)
Also, it was suggested that a 6-month follow-up might support maintained behaviour change:
‘As time goes on and you get the confidence that you’re not going to have another one, there is a danger that you can just drift back into bad habits … 6-month review might motivate you further to get into a real life change habit.’
(60-year-old male, group 2)