Tia and minor stroke: a qualitative study of long

Background

Transient ischaemic attaông chồng (TIA) and minor stroke are often considered transient events; however, many patients experience residual problems và reduced chất lượng of life. Current follow-up healthcare focuses on stroke prevention & care for other long-term problems is not routinely provided.

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We aimed khổng lồ explore patient và healthcare provider (HCP) experiences of residual problems post-TIA/minor stroke, the impact of TIA/minor stroke on patients’ lives, and current follow-up care và sources of support.

Methods

This qualitative sầu study recruited participants from three TIA clinics, seven general practices and one community care trust in the West Midlands, Engl&. Semi-structured interviews were conducted with 12 TIA/minor stroke patients và 24 HCPs from primary, secondary and community care. Data was analysed using framework analysis.

Results

A diverse range of residual problems were reported post-TIA/minor stroke, including psychological, cognitive và physical impairments. Consultants & general practitioners generally lacked awareness of these long-term problems; however, there was better recognition ahy vọng nurses và allied HCPs. Residual problems significantly affected patients’ lives, including return to work, social activities, và relationships with family và friends. Follow-up care was variable và medically focused. While HCPs prioritised medical investigations and stroke prevention medication, patients emphasised the importance of understanding their diagnosis, individualised support regarding stroke risk, & addressing residual problems.

Conclusion

HCPs could better communicate information about TIA/minor stroke diagnosis và secondary stroke prevention using lay language, và improve sầu their identification of và response lớn important residual impairments affecting patients.


Peer Đánh Giá reports


Background


Transient ischaemic attaông chồng (TIA) and minor stroke are important risk factors for stroke. Over 46,000 people experience a first TIA/minor stroke per year và 510,000 people live with TIA/minor stroke in the United Kingdom <1>. National guidelines promote rapid diagnosis and long-term management that focuses on stroke prevention <2,3,4>. A growing body of epidemiological retìm kiếm demonstrates that many people with TIA/minor stroke experience residual impairments, <5,6,7,8> reduced quality of life <9,10,11> & difficulty returning to lớn work or usual activities <12,13,14,15>.

Qualitative studies of TIA/minor stroke have sầu predominantly focussed on patients’ experiences of initial symptoms, symptom recognition & help seeking behaviour <16,17,18,19>. However, some studies have explored patients’ experiences after the adễ thương stage và reported a diverse range of residual impairments, including: anxiety, mood/emotional impact, cognitive sầu impairment, <21, 26> fatigue, <23, 25, 27> physical weakness, <21, 23, 25> visual impairments <25> and impaired speech <21>. The impact of TIA/minor stroke on patients’ ability khổng lồ return to work, <25,26,27> performance at work, <đôi mươi, 25> social activities <20, 21, 23, 26, 27> & family relationships has also been reported <23,24,25,26, 28>. However, these studies only focus on TIA/minor stroke patients’ experiences và there is no qualitative sầu exploration of healthcare providers’ (HCPs) perspectives. To improve future care, it is important to identify any critical gaps in understanding & experiences of TIA/minor stroke between HCPs and patients.

This qualitative study aimed lớn explore patient và HCPhường experiences of: (i) residual problems post-TIA/minor stroke; (ii) the impact of TIA/minor stroke on patients’ lives; & (iii) current follow-up care and sources of support.


Methods


This study is a qualitative study with TIA/minor stroke patients and HCPs. Qualitative sầu methodology was used as it is best placed khổng lồ describe participants’ views & experiences of disease, and impact of disease và related healthcare <29>.

This study is nested within a larger retìm kiếm programme aiming khổng lồ develop & assess the feasibility of a follow-up pathway post-TIA/minor stroke (SUPPORT TIA: Structured follow-Up Pathway to imProve management Of Residual impairmenTs và patients’ unique of life after Transient Ischaemic Attaông chồng và minor stroke) <30>. The qualitative findings will inform design of an intervention follow-up pathway for TIA/minor stroke patients.

Participants, sampling and recruitment

Participants were: (i) people who have sầu experienced a TIA or minor stroke or (ii) HCPs working with TIA/minor stroke patients, including: secondary care doctors, nurses or allied health professionals (AHPs); general practitioners (GPs); & community AHPs and nurses.

Eligibility criteria for TIA/minor stroke patients were: confirmed diagnosis by a stroke consultant or clinical code in primary care medical records verified by a GPhường. (TIA); modified Rankin scale score ≤ 1 (minor stroke) <31>; aged ≥18 years; ability to lớn converse in everyday English; capacity khổng lồ provide fully informed consent; no history of stroke or dementia; và no reasons known khổng lồ the clinician lớn exclude (e.g. terminal illness, recent bereavement). Eligible HCPs were current members of staff from secondary, primary or community care who worked with TIA/minor stroke patients.

Convenience & snowball sampling was used initially; however, sampling became increasingly purposeful to achieve variation in diagnosis và time since sự kiện for patients, and clinical role (doctor, nurse, AHP) for HCPs. TIA/minor stroke patients were recruited from two general practices & TIA clinics at three hospitals in the West Midlands, Englvà. Postal invitation was used lớn recruit patients from the general practices and patients from TIA clinics were invited to lớn participate by a member of the clinical team. Secondary care doctors, nurses and AHPs were recruited from the three TIA clinics. Community HCPs were recruited from Birmingmê say Community Healthcare Trust. GPs were recruited from two general practices in the West Midlands.

Data collection

One-to-one, semi-structured interviews were conducted by telephone or face-to-face (at the University of Birmingđê mê, participants’ trang chính, or participants’ workplace). No repeat interviews were conducted. All interviews were conducted by GT, a female, non-medical researcher trained in qualitative research methods. The interviewer did not have a relationship with any of the participants; however, a small number of HCPs (n = 2) were known contacts.

Topic guides were informed by existing literature, consultation with the retìm kiếm team và patient partners, and refined through piloting. Topic guides covered: residual problems post-TIA/minor stroke; impact on patients’ lives; follow-up care; và sources of tư vấn (see Additional file 1).

Participants completed a short demographic questionnaire (see Additional files 2 & 3) và field notes were taken during interviews. Digital audio recorded interviews were transcribed verbatyên ổn by a professional transcription service. Transcripts were not returned to participants for feedbaông chồng.

Interviews were conducted between March & November 2018, until the research team judged that the sample và data had sufficient depth và breadth to lớn address the retìm kiếm questions.

Data analysis

Computer Aided Qualitative Data Analysis Software QSR NVivo 12 supported the sorting, coding & organisation of transcribed data prior to application of the framework method <32>. Transcripts were read several times khổng lồ enable familiarisation with the interviews. GT coded all transcripts & CM (experienced qualitative researcher) independently coded a submix (10%). xuất hiện coding was initially applied khổng lồ three transcripts independently by GM và CM, codes were then reviewed by GM và CM and discrepancies resolved through discussion. Agreed codes were then organised inkhổng lồ categories which formed the analytical framework. This framework was applied lớn all transcripts và iteratively refined. Microsoft Excel was used to generate a matrix và data were ‘charted’ into the matrix by GT. The matrix was used to describe participants’ experiences & facilitate comparisons within và across participant groups. The final analysis and interpretation was discussed with the wider research team, including patient partners.

Ethics, consent & permissions

Favourable ethical opinion was given by the Warwickshire North West - Greater Manchester East Retìm kiếm Ethics Committee (Reference: 17/NW/0737). Written or recorded verbal consent was obtained from the participants, by the interviewer, immediately prior lớn the interview.


The final sample consisted of 12 patients (7 TIA & 5 minor stroke) & 24 HCPs (5 stroke doctors, 4 nurses, 9 AHPs and 6 GPs). Participants’ characteristics are summarised in Tables 1 and 2 & detailed in (see Additional file 4: Tables S1 and S2). The mean interview length was 49 min (range 23 lớn 89 min).


*

Residual problems

Patients và HCPs reported a diverse range of residual problems post-TIA/minor stroke, including psychological, cognitive sầu & physical impairments (see Additional tệp tin 4: Tables S3). Although all participant groups mentioned anxiety và fatigue, patients emphasised these as the most significant sequelae. Some patients described residual problems as “hidden”, due khổng lồ lack of physical symptoms, và consequently found their symptoms were dismissed by HCPs or felt they weren’t “entitled” khổng lồ 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” .


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 ađáng yêu stage, & 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 và fear. They would be the four main ones for me that we would see.” .


Psychological problems

Most participants described psychological consequences of TIA/minor stroke, particularly anxiety about having a full stroke. Depression was reported, but less frequently, và was considered by some HCPs to be a consequence of other residual problems, such as anxiety or fatigue which can “snowball inlớn depression” , or an exacerbation of pre-stroke psychological problems. For instance, one patient became severely depressed and suicidal after cognitive sầu impairment post-TIA affected their ability khổng lồ work in their cognitively demanding job. Mood và 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 khổng lồ work).

Cognitive sầu impairment

Patients, AHPs and GPs all reported cognitive sầu 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” .


Executive functioning problems included difficulties following instructions, preparing meals & planning journeys. Four patients reported memory problems; two were subtle but two had significant impacts on lives. Attention deficits included problems maintaining concentration & difficulty following group conversations. One patient had cognitive-related speech problems, particularly finding words, which caused frustration & significantly affected confidence.

AHPs highlighted impacts of “hidden” cognitive problems on patients’ lives, such as return khổng lồ work or ability to lớn self-assess driving competence, and recognised màn chơi of impact was context specific so tailored screening tests and treatment accordingly.

Fatigue và physical problems

Fatigue was frequently reported và affected patients’ daily lives, ability to work, performance at work, confidence & mood. Fatigue was particularly debilitating for patients with work & family commitments.


Some participants highlighted that fatigue was most severe and debilitating in the first 2 lớn 4 weeks post-TIA/minor stroke. At this time patients reported sleeping all day, being unable lớn work và relying on family for child care. For some patients, fatigue resolved after a month; however, six patients reported persistent fatigue và tried different coping strategies, including power naps, regulating sleep, resting after work và exercise. Nurses và 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 và 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 sầu pain in my face và my ear & my hand … when there’s too much input đầu vào, it gets too much in my head và then the pain comes.” .


In contrast, two patients did not experience any residual problems & felt they had returned to normal. HCPs also reported some patients had no issues và were happy to lớn “move on”.

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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 (see Additional tệp tin 4: Table S4). Many patients experienced loss of identify và some struggled lớn accept their diagnosis, particularly patients

“I need lớn take more breaks, I cannot sit in two, three hour meetings, that kills me so I need lớn have sầu more breaks và I need to lớn write much more things down, I’m still doing things forgetting that I’ve sầu 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 capathành phố because I notice that I’m not this quiông xã or smart as … , I need to lớn focus much more.” .


Impacts on work reported by patients included: reduced performance at work; decreased workload/hours; giving up opportunity for promotion (due to lớn lost confidence); and changing jobs lớn improve lifestyle. One patient, who had a cognitively demanding role, lost his job due to lớn mild cognitive sầu problems which resulted in depression, suicidal feelings & financial problems. Other patients experienced a loss of identity & 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 sầu, were discussed by half the patients but only three HCPs (a GP & two AHPs). Relationships were negatively affected by patients’ mood và emotional problems; patients becoming withdrawn due to lớn difficulty engaging in group conversations; & family/friends disregarding residual problems.


“Mood swings are the worst for my wife, she suffers the most … so I try lớn 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 it’s a stressful time for her …” .


HCPs reported changes in family roles và dynamics with other family members having to lớn 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 & re-evaluation of work-life balance or family priorities.

Social lives và daily living

Many patients described negative sầu 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 lớn participate in their usual activities.


“My quality of life is affected because I can’t go baông chồng lớn doing things that I lượt thích to lớn bởi vì, I haven’t got … I’m not working at the moment, I vày piano lessons, I’m not doing piano lessons, I’m not going khổng lồ the thể hình to the same degree, my personal trainer basically dropped me because I couldn’t really vì chưng very much so you know it’s lượt thích all of that that you have lost …” .


In contrast, HCPs did not mention social lives & often underestimated impact of TIA/minors stroke on patients’ lives. However, some HCPs acknowledged negative sầu 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 AHPhường. described a patient who gave up cigars and alcohol easily but when told not to lớn drink coffee “… he nearly collapsed, cause that’s the last little thing … it might feel small to us but that was his last pleasure” .

Experience of follow-up care và sources of support

Follow-up care varied in terms of organisational structures và 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 và alone post-discharge. Patients’ needs broadly comprised: information, stroke prevention & holistic care (see Additional file 4: Table S5).

Information needs

Information regarding diagnosis & stroke risk was predominantly provided at the axinh đẹp stage và considered inadequate by most patients. Patients reported information was difficult lớn process at the time of their diagnosis; language was too medical; HCPs gave sầu contradictory advice; và information was too generic and not personalised. HCPs were generally aware that many patients lacked basic understanding about their diagnosis và stroke risk/prevention; this was corroborated in some patient interviews:


“Well it only lasted you know đôi mươi minutes … So the next one will probably only last a minute, so I didn’t bother.” .


Secondary care clinicians recognised it is not igiảm giá lớn 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 lớn time constraints or assumptions this had been done adequately in secondary care.

Most patients accessed information online, but often found this overwhelming, confusing, contradictory & too generalised. In contrast, some patients found stroke websites useful and learnt from other patients’ experiences from forums. Consultants, nurses và AHPs frequently relied on stroke charity websites khổng lồ supplement verbal information. Patients often relied on family/friends to explain medical terms, search for information online và help with treatment decisions.

Stroke prevention

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 khổng lồ monitor progress. Others had a “protocolised” approach (prescribed the same medication regardless of the patient) or relied on GPs lớn prescribe appropriate medication. Some GPs considered they were best placed to lớn prescribe prevention medication with their knowledge of patients’ comorbidities và polypharmacy. However, other GPs felt they lacked speciamenu 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 khổng lồ really make the assumption that the patient has been counselled adequately about that medication và why they’re being put on it … it wouldn’t be feasible for every speciacác mục letter we get for strokes và everything else to liên hệ the patient khổng lồ sort of go through the, we wouldn’t bởi anything else really. So we add the medication lớn the repeat prescription …” .


Being prescribed lifelong medication was a significant change for patients và 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 tư vấn patients khổng lồ 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 & don’t really feel I have sầu time in the clinic to lớn vày that in great depth.” .


Holistic needs

Follow-up care, particularly from consultants & GPs, was predominantly medically focused. Some consultants felt they lacked skills to lớn address holistic needs và there was a general laông xã of knowledge aước ao consultants và GPs of residual problems post-TIA/minor stroke.


“I don’t think I will bring back sometoàn thân khổng lồ manage their mood and fatigue because I don’t feel competent in doing that and probably I’m not.” .


Nurses và AHPs generally provided more holistic care; however, most patients in our sample did not access nurse/AHPhường follow-up. Some HCPs felt patients were more likely khổng lồ 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 tư vấn for holistic needs. Family/friends provided emotional & practical support (such as household responsibilities và childcare). Some patients employed self-management strategies, particularly for fatigue (regulating sleep patterns, exercise, naps & planning activities); cognition (word searches, crosswords and jigsaws); and anxiety (mindfulness và relaxation techniques).

Some patients accessed support services. Three patients received psychological support through their GPhường, work or self-referral after signposting from a stroke charity. Two minor stroke patients had therapist tư vấn through the hospital or their workplace. HCPs occasionally referred patients khổng lồ tư vấn 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 khổng lồ 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 tư vấn despite experiencing significant residual problems. Others received useful tư vấn from stroke charities, including advice & signposting to community services. Similarly, patients had mixed responses khổng lồ stroke tư vấn groups. Most patients stated they would feel “embarrassed” or lượt thích a “fraud” attending groups with full stroke patients, despite wanting peer support; whereas, others benefitted from such groups.


Summary

This is the first qualitative study to lớn explore patient và HCP.. experiences of long-term impacts of TIA/minor stroke and follow-up care. Many patients experienced a diverse range residual problems, including psychological, cognitive sầu và physical impairments, which were ‘hidden’ but had impacts on their lives. Stroke consultants & GPs generally lacked awareness about residual problems post-TIA/minor stroke; however, there was better recognition aao ước nurses and AHPs. Follow-up care was variable, medically focused và did not adequately address patients’ complex, individual needs. While HCPs prioritised medical investigations và stroke prevention medication, patients concerns encompassed understanding their diagnosis, individualised tư vấn khổng lồ manage their stroke risk, và addressing impacts of residual problems. Many patients felt abandoned post-discharge & relied on tư vấn from family/friends, the mạng internet và self-management strategies.

Strengths và limitations

We drew upon a wide range of experiences, including patients (at a range of time points post-event and age ranges) và HCPs across different healthcare settings & disciplines. These different perspectives have enriched our understanding of the diverse range of symptoms/impacts post-TIA/minor stroke và disparate priorities for follow-up care between patients & HCPs. Despite recruitment from ethnically diverse populations in the West Midlands, most participants were white. For pragmatic reasons, only a subset of transcripts were double coded.

Comparison with existing literature

Our results support findings from other studies which report residual impairments post-TIA/minor stroke <20,21,22,23,24,25,26,27>. Similar khổng lồ our study, TIA/minor stroke has been demonstrated lớn impact on patients’ ability to return to lớn work or usual activities, and can affect relationships with family & friends <đôi mươi, 21, 23, 25,26,27,28>. In addition, the ‘hidden’ nature of impairments post-TIA/minor stroke has been reported khổng lồ cause difficulties for patients to lớn communicate their needs <26> and frustration due to lớn lachồng of recognition of problems from HCPs & family/friends <20>. Our study is the first to lớn report HCPs perspectives of residual problems post-TIA/minor stroke và highlight the general lachồng of awareness about these problems, particularly from consultants & GPs.

Few studies have sầu explored TIA/minor stroke patients’ experience of follow-up care or sources of support. Those that did focused on stroke prevention and none have sầu explored HCPs’ perspectives. Hillsdon et al. (2013) found patients were unable to digest information delivered at the axinh đẹp stage and used other sources, such as mạng internet và peers, for information about diagnosis and stroke prevention <28>. Other studies found patients did not receive formal tư vấn for secondary stroke prevention and patients’ actions were self-directed, driven by personality traits (e.g. optimistic or competitive personalities) <26> & correlated with perceptions of future stroke risk <22>. Similar to lớn our findings, other studies have reported patients’ dissatisfaction with care, particularly laông xã of: communication, <28> holistic follow-up, <25> rehabilitation options, <26> and individualised information và tư vấn <28>. Our findings further enrich understanding of the variability in follow-up care, complexity of patients’ needs & differences in priorities for follow-up care between patients & HCPs.

Implications for retìm kiếm and/or practice

Current healthcare post-TIA/minor stroke is variable & does not address patients’ complex, individual needs. Our findings suggest follow-up needs to lớn encompasses information provision (diagnosis & stroke risk); stroke prevention (medication và lifestyle change); & holistic needs (residual problems & return to work/usual activities).

Adequate information provision requires lay language, two-way communication và information reiterated at multiple time points by different HCPs. Lifestyle change could be actively addressed by HCPs with consideration of the patients’ individual context và tư vấn from community tư vấn services. HCPs need to consider the diverse range of residual symptoms and problems TIA/minor stroke patients may experience. Proactive sầu identification of such issues by HCPs might be beneficial.

Greater integration between secondary & primary care clinicians và better distinction of their roles might improve sầu stroke prevention by combining specialists’ stroke knowledge with generalists’ knowledge of the patient. Tailored tư vấn for patients could potentially be further improved by better access khổng lồ AHPs and nurses, và continuous communication loops with primary and secondary care physicians. Due to rapid discharge of patients from secondary care, primary care clinicians in particular have an important role in the coordination and communication of tailored tư vấn between healthcare settings và managing care in consideration with multimorbidity, polypharmacy và patients’ preferences.

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Future retìm kiếm is required to establish the natural history of residual impairments post-TIA/minor stroke, including onmix & duration, to help inform optimal time points for follow-up. Understanding the mechanism và characteristics of residual problems would help inform appropriate management/treatment approaches. For example, Chun et al. (2018) found anxiety post-stroke/TIA is predominantly phobic <33>. In addition, our findings suggest the value of collecting data on residual symptoms và impacts on patients’ lives in future TIA/minor stroke retìm kiếm studies. Further retìm kiếm should evaluate structured models of care lớn improve sầu follow-up post-TIA/minor stroke. There is a need lớn develop pathways which are more responsive to TIA/minor stroke patients’ needs và are supported by education to ensure HCPs are sensitive sầu lớn these needs and have skills lớn address them.


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