‘I am still a bit unsure how much of a heart attack it really was!’ Patients presenting with non ST elevation myocardial infarction lack understanding about their illness and have less motivation for secondary prevention

Dullaghan, Lisa; Lusk, Lisa; McGeough, Mary; Donnelly, Patrick; Herity, Niall A.; Fitzsimons, Donna

doi:10.1177/1474515113491649

Cited by 31 publications

(38 citation statements)

References 23 publications

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“…Curry et al 351 did not highlight early initial assessment, but the importance we ascribe to this process is consistent with studies by investigators in Canada 485 and England. 486,487 Better information about AMI for patients is a key finding of several studies 483,[488][489][490] and a core feature of good-quality discharge. The importance of strong interdisciplinary communication and co-ordination has also been emphasised.…”

Section: Visible Cardiology Leadershipmentioning

confidence: 99%

Using nationwide ‘big data’ from linked electronic health records to help improve outcomes in cardiovascular diseases: 33 studies using methods from epidemiology, informatics, economics and social science in the ClinicAl disease research using LInked Bespoke studies and Electronic health Records (CALIBER) programme

Hemingway

Feder

Denaxas

et al. 2017

Programme Grants Appl Res

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BackgroundElectronic health records (EHRs), when linked across primary and secondary care and curated for research use, have the potential to improve our understanding of care quality and outcomes.ObjectiveTo evaluate new opportunities arising from linked EHRs for improving quality of care and outcomes for patients at risk of or with coronary disease across the patient journey.DesignEpidemiological cohort, health informatics, health economics and ethnographic approaches were used.Setting230 NHS hospitals and 226 general practices in England and Wales.ParticipantsUp to 2 million initially healthy adults, 100,000 people with stable coronary artery disease (SCAD) and up to 300,000 patients with acute coronary syndrome.Main outcome measuresQuality of care, fatal and non-fatal cardiovascular disease (CVD) events.Data platform and methodsWe created a novel research platform [ClinicAl disease research using LInked Bespoke studies and Electronic health Records (CALIBER)] based on linkage of four major sources of EHR data in primary care and national registries. We carried out 33 complementary studies within the CALIBER framework. We developed a web-based clinical decision support system (CDSS) in hospital chest pain clinics. We established a novel consented prognostic clinical cohort of SCAD patients.ResultsCALIBER was successfully established as a valid research platform based on linked EHR data in nearly 2 million adults with > 600 EHR phenotypes implemented on the web portal (seehttps://caliberresearch.org/portal). Despite national guidance, key opportunities for investigation and treatment were missed across the patient journey, resulting in a worse prognosis for patients in the UK compared with patients in health systems in other countries. Our novel, contemporary, high-resolution studies showed heterogeneous associations for CVD risk factors across CVDs. The CDSS did not alter the decision-making behaviour of clinicians in chest pain clinics. Prognostic models using real-world data validly discriminated risk of death and events, and were used in cost-effectiveness decision models.ConclusionsEmerging ‘big data’ opportunities arising from the linkage of records at different stages of a patient’s journey are vital to the generation of actionable insights into the diagnosis, risk stratification and cost-effective treatment of people at risk of, or with, CVD.Future workThe vast majority of NHS data remain inaccessible to research and this hampers efforts to improve efficiency and quality of care and to drive innovation. We propose three priority directions for further research. First, there is an urgent need to ‘unlock’ more detailed data within hospitals for the scale of the UK’s 65 million population. Second, there is a need for scaled approaches to using EHRs to design and carry out trials, and interpret the implementation of trial results. Third, large-scale, disease agnostic genetic and biological collections linked to such EHRs are required in order to deliver precision medicine and to innovate discovery.Study registrationCALIBER studies are registered as follows: study 2 – NCT01569139, study 4 – NCT02176174 and NCT01164371, study 5 – NCT01163513, studies 6 and 7 – NCT01804439, study 8 – NCT02285322, and studies 26–29 – NCT01162187. Optimising the Management of Angina is registered as Current Controlled Trials ISRCTN54381840.FundingThe National Institute for Health Research (NIHR) Programme Grants for Applied Research programme (RP-PG-0407-10314) (all 33 studies) and additional funding from the Wellcome Trust (study 1), Medical Research Council Partnership grant (study 3), Servier (study 16), NIHR Research Methods Fellowship funding (study 19) and NIHR Research for Patient Benefit (study 33).

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Section: Visible Cardiology Leadershipmentioning

confidence: 99%

Using nationwide ‘big data’ from linked electronic health records to help improve outcomes in cardiovascular diseases: 33 studies using methods from epidemiology, informatics, economics and social science in the ClinicAl disease research using LInked Bespoke studies and Electronic health Records (CALIBER) programme

Hemingway

Feder

Denaxas

et al. 2017

Programme Grants Appl Res

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“…Dullaghan et al. () found that the patients expressed an understanding of the condition as chronic and were therefore motivated to make lifestyle changes. Kähkönen et al.…”

Section: Introductionmentioning

confidence: 99%

Patients' narratives of their patient participation in the myocardial infarction pathway

Bårdsgjerde

Kvangarsnes

Landstad

et al. 2019

Journal of Advanced Nursing

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Aim To explore how patients in areas without local percutaneous coronary intervention (PCI) facilities experience patient participation in different phases of the myocardial infarction pathway. Background Acute treatment of myocardial infarction often involves PCI. In Norway, this treatment is centralized at certain hospitals; thus, patients often require long‐distance transportation and experience frequent hospital transfers. Short hospital stays, transfers between hospitals and the patient's emotional state pose challenges to promoting patient participation. Design A qualitative design with a narrative approach. Methods Participants were recruited through purposive sampling. Eight men and two women were interviewed in 2016. Findings Four themes related to the patients' experiences at the beginning, middle and end of the pathway were identified: (a) Lack of verbal communication in the acute phase; (b) trust in healthcare professionals and treatment; (c) lack of participation and coordination at discharge; and (d) shared decision‐making in rehabilitation. The findings showed how the patients moved from a low level of patient participation in the acute phase to a high level of patient participation in the rehabilitation phase. Conclusion This is the first study to explore patient participation in different phases of the myocardial infarction pathway. We argue that individual plans for information and patient participation are important to improve patient involvement in an earlier stage of the pathway. Further research from a healthcare professional perspective can be valuable to understand this topic. Impact This study gives new insight that can be valuable for healthcare professionals in implementing patient participation throughout the pathway.

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“…Dullaghan et al . () found that STEMI patients (treated with PPCI or thrombolysis) viewed their illness as serious and life‐threatening and were committed to making lifestyle changes.…”

Section: Introductionmentioning

confidence: 99%

The experiences of myocardial infarction patients readmitted within six months of primary percutaneous coronary intervention

Iles-Smith

Deaton

Campbell

et al. 2017

Journal of Clinical Nursing

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Aims and objectives To explore the experiences of patients readmitted due to potential ischaemic heart disease symptoms within six months of primary percutaneous coronary intervention. Background Following myocardial infarction and primary percutaneous coronary intervention, some patients experience potential ischaemic heart disease symptoms that may lead to readmission. Symptoms may be related to cardiac ischaemia, reduced psychological health or a comorbid condition. Design A qualitative study involving semistructured, in‐depth interviews conducted once, mean 196 (50–384) days following readmission (at least six months following original ST‐elevation myocardial infarction and primary percutaneous coronary intervention). This is the qualitative part of a mixed methods study. Methods Participants were purposefully selected, and concurrent sampling, data collection and data analysis were performed. Data were organised using framework analysis; constant comparative analysis involving deduction and induction led to identification of cogent themes and subthemes. Results Twenty‐five participants (14 men, 27–79 years) experienced 1–4 readmissions; discharge diagnoses were cardiac, psychological, indeterminate, pulmonary and gastric. Three main themes emerged: (1) anxiety, uncertainty and inability to determine cause of symptoms, (2) fear of experiencing further myocardial infarction and (3) insufficient opportunity to validate self‐construction of illness. Conclusion Fear of dying or experiencing a further myocardial infarction led to patients seeking help at the time of potential ischaemic heart disease symptoms. Participants were anxious and lacked understanding regarding symptom attribution at the time of readmission and generally following their heart attack. Additionally, original heart attack symptoms were used as a comparator for future symptoms. Participants reported feeling well immediately after primary percutaneous coronary intervention but later experiencing fatigue and debilitation often linked to potential ischaemic heart disease symptoms. Relevance to clinical practice Increased education and information related to symptom attribution post‐primary percutaneous coronary intervention and postreadmission are worthy of exploration and may lead to increased understanding and reassurance for this patient group.

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‘I am still a bit unsure how much of a heart attack it really was!’ Patients presenting with non ST elevation myocardial infarction lack understanding about their illness and have less motivation for secondary prevention

Cited by 31 publications

References 23 publications

Patients' narratives of their patient participation in the myocardial infarction pathway

The experiences of myocardial infarction patients readmitted within six months of primary percutaneous coronary intervention

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