The final sample consisted of 12 patients (7 TIA and 5 minor stroke) and 24 HCPs (5 stroke doctors, 4 nurses, 9 AHPs and 6 GPs). Participants’ characteristics are summarised in Tables 1-2 and detailed in eTables 1-2 (see appendix). The mean interview length was 49 minutes (range 23 to 89 minutes).
Results are described below, grouped according to research questions (Figure 1).
Patients and HCPs reported a diverse range of residual problems post-TIA/minor stroke, including psychological, cognitive and physical impairments (eTable 3, see appendix). Although all participant groups mentioned anxiety and fatigue, patients emphasised these as the most significant sequelae. Some patients described residual problems as “hidden”, due to lack of physical symptoms, and consequently found their symptoms were dismissed by HCPs or felt they weren’t “entitled” to seek help for non-physical problems.
“I know it’s there but people who look at me don’t see it. They say oh you look okay. That’s the worst thing is when you say, oh you look okay, I might look good, I don’t feel it you know” [P1, TIA]
Nurses and AHPs were usually aware of residual impairments post-TIA/minor stroke. However, these problems were under-recognised by other HCPs, particularly consultants, who predominantly saw patients at the acute stage, and GPs, who infrequently saw TIA/minor stroke patients.
“It’s not a recognised phenomenon but we know it is and we see it all the time. So, fatigue, anxiety and loss of confidence and fear. They would be the four main ones for me that we would see.” [H22, stroke nurse]
Most participants described psychological consequences of TIA/minor stroke, particularly anxiety about having a full stroke. Depression was reported, but less frequently, and was considered by some HCPs to be a consequence of other residual problems, such as anxiety or fatigue which can “snowball into depression” [H9, GP], or an exacerbation of pre-stroke psychological problems. For instance, one patient became severely depressed and suicidal after cognitive impairment post-TIA affected their ability to work in their cognitively demanding job. Mood and emotional problems described included: increased emotionalism, anger, mood swings, frustration, irritation, lack of empathy and loss of confidence. Sometimes these were in reaction to residual symptoms (such as fatigue) or impacts on life (such as inability to work).
Patients, AHPs and GPs all reported cognitive impairments, which were subtle and covered four domains: executive functioning, memory, attention and language. Some cognitive problems were difficult to articulate:
“My head don’t feel right every day, all day, there’s something not right with it, I couldn’t put my finger on it” [P1, TIA].
Executive functioning problems included difficulties following instructions, preparing meals and planning journeys. Four patients reported memory problems; two were subtle but two had significant impacts on lives. Attention deficits included problems maintaining concentration and difficulty following group conversations. One patient had cognitive-related speech problems, particularly finding words, which caused frustration and significantly affected confidence.
AHPs highlighted impacts of “hidden” cognitive problems on patients’ lives, such as return to work or ability to self-assess driving competence, and recognised level of impact was context specific so tailored screening tests and treatment accordingly.
Fatigue and physical problems
Fatigue was frequently reported and affected patients’ daily lives, ability to work, performance at work, confidence and mood. Fatigue was particularly debilitating for patients with work and family commitments.
"[fatigue] that's the other biggest impact because I literally, I can't do too much…” [P7, TIA]
Some participants highlighted that fatigue was most severe and debilitating in the first two to four weeks post-TIA/minor stroke. At this time patients reported sleeping all day, being unable to work and relying on family for child care. For some patients, fatigue resolved after a month; however, six patients reported persistent fatigue and tried different coping strategies, including power naps, regulating sleep, resting after work and exercise. Nurses and AHPs suggested reassurance that fatigue is normal often helped patients; however, in some cases a more proactive approach was required, such as education, sleep hygiene (sleep behaviours and habits) and adjusting daily routines.
Physical symptoms were less common, those reported included: minor weakness, “altered sensation”, pain, speech, headaches and problems swallowing. Most physical problems were considered minor by patients with very limited impact on their lives; however, speech impairment or pain significantly affected quality of life for three patients.
“… I have pain in my face and my ear and my hand … when there’s too much input, it gets too much in my head and then the pain comes.” [P9, minor stroke]
In contrast, two patients did not experience any residual problems and felt they had returned to normal. HCPs also reported some patients had no issues and were happy to “move on”.
Impact on patients’ lives
The impact of TIA/minor stroke reported by patients and HCPs was diverse, including: return to work/education; relationships with family/friends; social lives; and daily activities (eTable 4, see appendix). Many patients experienced loss of identify and some struggled to accept their diagnosis, particularly patients <65 years or who considered themselves healthy.
Return to work or education
Eight patients were working at the time of their TIA/minor stroke and one was a mature student. All took time off work/education, varying from one to three months, and most had a phased return. Some HCPs recognised the impact of residual problems on ability to work, particularly for patients in cognitively demanding jobs; however, others were sceptical about impact of TIA/minor stroke on ability to work and one consultant felt some patients used TIA as an excuse to stop working.
Patients’ reported ability to work was affected by cognitive problems (particularly memory or concentration), fatigue, anxiety, loss of confidence, feeling overwhelmed and driving restrictions.
“I need to take more breaks, I cannot sit in two, three hour meetings, that kills me so I need to have more breaks and I need to write much more things down, I’m still doing things forgetting that I’ve done it or forgetting that I haven’t done it, I put in the same meeting twice with the team… I’m almost up to full time … but not full capacity because I notice that I’m not this quick or smart as…, I need to focus much more.” [P9, minor stroke]
Impacts on work reported by patients included: reduced performance at work; decreased workload/hours; giving up opportunity for promotion (due to lost confidence); and changing jobs to improve lifestyle. One patient, who had a cognitively demanding role, lost his job due to mild cognitive problems which resulted in depression, suicidal feelings and financial problems. Other patients experienced a loss of identity and helplessness about the impact of residual impairments on their ability to work.
Relationships with family/ friends
Impacts on relationships with family/friends, both negative and positive, were discussed by half the patients but only three HCPs (a GP and two AHPs). Relationships were negatively affected by patients’ mood and emotional problems; patients becoming withdrawn due to difficulty engaging in group conversations; and family/friends disregarding residual problems.
“Mood swings are the worst for my wife, she suffers the most… so I try to watch what I say, most times it’s quietness between us because I’m scared to say something that will just trigger one of these [mood swing] it’s a stressful time for her…” [P1, TIA]
HCPs reported changes in family roles and dynamics with other family members having to take over household responsibilities (such as childcare or finances) and family members’ fear of the patient having a full stroke, which were corroborated by patients.
In contrast, some patients reported positive impacts, such as improved family relationships and re-evaluation of work-life balance or family priorities.
Social lives and daily living
Many patients described negative impacts on social lives, such as residual problems or loss of confidence preventing participation in social activities, hobbies, exercise or group conversations. Some patients described the loss from being unable to participate in their usual activities.
“My quality of life is affected because I can’t go back to doing things that I like to do, I haven’t got… I’m not working at the moment, I do piano lessons, I’m not doing piano lessons, I’m not going to the gym to the same degree, my personal trainer basically dropped me because I couldn’t really do very much so you know it’s like all of that that you have lost…” [P7, TIA]
In contrast, HCPs did not mention social lives and often underestimated impact of TIA/minors stroke on patients’ lives. However, some HCPs acknowledged negative impacts on daily living, including looking after children/grandchildren, managing household finances and insurance; were aware that driving restrictions affected daily routines, such as picking up children from school; and recognised challenges of lifestyle changes. For instance, one AHP described a patient who gave up cigars and alcohol easily but when told not to drink coffee “…he nearly collapsed, cause that’s the last little thing … it might feel small to us but that was his last pleasure” [P15, psychologist].
Experience of follow-up care and sources of support
Follow-up care varied in terms of organisational structures and practices of individual HCPs. For example, only one of the three hospitals offered nurse-led follow-up, which was inconsistently used by consultants. Patients reported mixed experiences of follow-up care, but largely felt abandoned and alone post-discharge. Patients’ needs broadly comprised: information, stroke prevention and holistic care (eTable 5, see appendix).
Information regarding diagnosis and stroke risk was predominantly provided at the acute stage and considered inadequate by most patients. Patients reported information was difficult to process at the time of their diagnosis; language was too medical; HCPs gave contradictory advice; and information was too generic and not personalised. HCPs were generally aware that many patients lacked basic understanding about their diagnosis and stroke risk/prevention; this was corroborated in some patient interviews:
[explaining why they did not seek medical care for subsequent TIA symptoms] “Well it [TIA symptoms] only lasted you know 20 minutes… So the next one will probably only last a minute, so I didn’t bother.” [P4, TIA]
Secondary care clinicians recognised it is not ideal to deliver information at time of diagnosis and information should be reiterated by primary/community HCPs. However, most GPs admitted not repeating information or checking patients’ understanding due to time constraints or assumptions this had been done adequately in secondary care.
Most patients accessed information online, but often found this overwhelming, confusing, contradictory and too generalised. In contrast, some patients found stroke websites useful and learnt from other patients’ experiences from forums. Consultants, nurses and AHPs frequently relied on stroke charity websites to supplement verbal information. Patients often relied on family/friends to explain medical terms, search for information online and help with treatment decisions.
There were conflicting views between primary and secondary care clinicians regarding responsibility for prescribing prevention medication. Some consultants felt it was their role and followed up patients to monitor progress. Others had a “protocolised” approach (prescribed the same medication regardless of the patient) or relied on GPs to prescribe appropriate medication. Some GPs considered they were best placed to prescribe prevention medication with their knowledge of patients’ comorbidities and polypharmacy. However, other GPs felt they lacked specialist stroke knowledge, particularly when first line drugs were contraindicated, or time/resource constraints prevented them checking hospital prescriptions or patients understanding.
“Rightly or wrongly I think we have to really make the assumption that the patient has been counselled adequately about that medication and why they’re being put on it… it wouldn’t be feasible for every specialist letter we get for strokes and everything else to contact the patient to sort of go through the, we wouldn’t do anything else really. So we add the medication to the repeat prescription…” [GP, H13]
Being prescribed lifelong medication was a significant change for patients and many felt unsupported. Nurses recalled some patients misunderstanding prevention medication, such as thinking it was short-term.
Lifestyle change was not comprehensively addressed by HCPs, usually because of time restraints. Some HCPs mentioned healthy lifestyle, but did not actively support patients to make changes. The only exceptions were AHPs who saw this as part of their role.
“So, we talk about stopping smoking and healthy diet and exercise but it’s a fairly brief discussion and don’t really feel I have time in the clinic to do that in great depth.” [consultant, H20]
Follow-up care, particularly from consultants and GPs, was predominantly medically focused. Some consultants felt they lacked skills to address holistic needs and there was a general lack of knowledge among consultants and GPs of residual problems post-TIA/minor stroke.
“I don't think I will bring back somebody to manage their mood and fatigue because I don’t feel competent in doing that and probably I'm not.” [H17, consultant]
Nurses and AHPs generally provided more holistic care; however, most patients in our sample did not access nurse/AHP follow-up. Some HCPs felt patients were more likely to talk to nurses about holistic needs than doctors. This was corroborated by some patients who considered doctor appointments were only for medical issues.
Patients often relied on informal sources of support for holistic needs. Family/friends provided emotional and practical support (such as household responsibilities and childcare). Some patients employed self-management strategies, particularly for fatigue (regulating sleep patterns, exercise, naps and planning activities); cognition (word searches, crosswords and jigsaws); and anxiety (mindfulness and relaxation techniques).
Some patients accessed support services. Three patients received psychological support through their GP, work or self-referral after signposting from a stroke charity. Two minor stroke patients had therapist support through the hospital or their workplace. HCPs occasionally referred patients to support services but generally lacked awareness of what is available.
HCPs considered the Stroke Association (UK’s biggest stroke charity) a valuable resource for additional support when they had limited time or lacked expertise to address holistic factors. However, patients varied in their perception of and engagement with this charity. Some patients felt stroke charities were only for people with full stroke, therefore, did not deserve their support despite experiencing significant residual problems. Others received useful support from stroke charities, including advice and signposting to community services. Similarly, patients had mixed responses to stroke support groups. Most patients stated they would feel “embarrassed” or like a “fraud” attending groups with full stroke patients, despite wanting peer support; whereas, others benefitted from such groups.