Making sure services deliver for people with advanced heart failure: a longitudinal qualitative study of patients, family carers, and health professionals

Boyd, Kirsty; Worth, Allison; Kendall, Marilyn; Pratt, Rebekah; Hockley, Jo; Denvir, Martin A.; Murray, Scott A

doi:10.1177/0269216309346541

Cited by 66 publications

(86 citation statements)

References 25 publications

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“…111 In recent years, longitudinal qualitative research has been used in a number of health-related areas to generate rich data and a deeper understanding of people's perspectives and experiences and how and why these may change over time in order to improve practice. [112][113][114][115] Rather than comparing findings at a number of distinct moments, longitudinal qualitative research is concerned with the comparison of different, continuous processes of change. The benefits of the longitudinal design will be that it will permit the same participants to be involved in identifying practice challenges and solutions, in developing methods for how alerts and recommendations can be best delivered for action, and for examining and reflecting on the effects with regard to practice change as well as system evaluation and improvement.…”

Section: Discussionmentioning

confidence: 99%

Development of risk models for the prediction of new or worsening acute kidney injury on or during hospital admission: a cohort and nested study

Bedford

Stevens

Coulton

et al. 2016

Health Serv Deliv Res

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BackgroundAcute kidney injury (AKI) is a common clinical problem with significant morbidity and mortality. All hospitalised patients are at risk. AKI is often preventable and reversible; however, the 2009 National Confidential Enquiry into Patient Outcome and Death highlighted systematic failings of identification and management, and recommended risk assessment of all emergency admissions.ObjectivesTo develop three predictive models to stratify the risk of (1) AKI on arrival in hospital; (2) developing AKI during admission; and (3) worsening AKI if already present; and also to (4) develop a clinical algorithm for patients admitted to hospital and explore effective methods of delivery of this information at the point of care.Study designQuantitative methodology (1) to formulate predictive risk models and (2) to validate the models in both our population and a second population. Qualitative methodology to plan clinical decision support system (CDSS) development and effective integration into clinical care.Settings and participantsQuantitative analysis – the study population comprised hospital admissions to three acute hospitals of East Kent Hospitals University NHS Foundation Trust in 2011, excluding maternity and elective admissions. For validation in a second population the study included hospital admissions to Medway NHS Foundation Trust. Qualitative analysis – the sample consisted of six renal consultants (interviews) and six outreach nurses (focus group), with representation from all sites.Data collectionData (comprising age, sex, comorbidities, hospital admission and outpatient history, relevant pathology tests, drug history, baseline creatinine and chronic kidney disease stage, proteinuria, operative procedures and microbiology) were collected from the hospital data warehouse and the pathology and surgical procedure databases.Data analysisQuantitative – both traditional and Bayesian regression methods were used. Traditional methods were performed using ordinal logistic regression with univariable analyses to inform the development of multivariable analyses. Backwards selection was used to retain only statistically significant variables in the final models. The models were validated using actual and predicted probabilities, an area under the receiver operating characteristic (AUROC) curve analysis and the Hosmer–Lemeshow test. Qualitative – content analysis was employed.Main outcome measures(1) A clinical pratice algorithm to guide clinical alerting and risk modeling for AKI in emergency hospital admissions; (2) identification of the key variables that are associated with the risk of AKI; (3) validated risk models for AKI in acute hospital admissions; and (4) a qualitative analysis providing guidance as to the best approach to the implementation of clinical alerting to highlight patients at risk of AKI in hospitals.FindingsQuantitative – we have defined a clinical practice algorithm for risk assessment within the first 24 hours of hospital admission. Bayesian methodology enabled prediction of low risk but could not reliably identify high-risk patients. Traditional methods identified key variables, which predict AKI both on admission and at 72 hours post admission. Validation demonstrated an AUROC curve of 0.75 and 0.68, respectively. Predicting worsening AKI during admission was unsuccessful. Qualitative – analysis of AKI alerting gave valuable insights in terms of user friendliness, information availability, clinical communication and clinical responsibility, and has informed CDSS development.ConclusionsThis study provides valuable evidence of relationships between key variables and AKI. We have developed a clinical algorithm and risk models for risk assessment within the first 24 hours of hospital admission. However, the study has its limitations, and further analysis and testing, including continuous modelling, non-linear modelling and interaction exploration, may further refine the models. The qualitative study has highlighted the complexity regarding the implementation and delivery of alerting systems in clinical practice.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

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Section: Discussionmentioning

confidence: 99%

Development of risk models for the prediction of new or worsening acute kidney injury on or during hospital admission: a cohort and nested study

Bedford

Stevens

Coulton

et al. 2016

Health Serv Deliv Res

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“…286 Additional barriers to the provision of palliative care services identified by healthcare providers included uncertainty about end of life because of its unpredictable trajectory, lack of need for end-of-life discussions in patients in New York Heart Association class II to III HF, and lack of time and resources to initiate discussions. [286][287][288] In qualitative reports, patients and families had misperceptions about being separated from familiar, trusted healthcare providers and not being hospitalized once they committed to palliative care. Accordingly, it has been suggested that healthcare providers need to introduce palliative care as a philosophy of care rather than a strategy used at end of life.…”

Section: Palliative Care Use and Perceptions In Cardiovascular Practicementioning

confidence: 99%

Contemporary Management of Cardiogenic Shock: A Scientific Statement From the American Heart Association

Diepen¹,

Katz²,

Albert³

et al. 2017

Circulation

1,282

1,165

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Cardiogenic shock is a high-acuity, potentially complex, and hemodynamically diverse state of end-organ hypoperfusion that is frequently associated with multisystem organ failure. Despite improving survival in recent years, patient morbidity and mortality remain high, and there are few evidence-based therapeutic interventions known to clearly improve patient outcomes. This scientific statement on cardiogenic shock summarizes the epidemiology, pathophysiology, causes, and outcomes of cardiogenic shock; reviews contemporary best medical, surgical, mechanical circulatory support, and palliative care practices; advocates for the development of regionalized systems of care; and outlines future research priorities. Cardiogenic shock (CS) is a low-cardiac-output state resulting in life-threatening end-organ hypoperfusion and hypoxia.1,2 Acute myocardial infarction (MI) with left ventricular (LV) dysfunction remains the most frequent cause of CS. 1,3 Advances in reperfusion therapy have been associated with improvements in survival, but significant regional disparities in evidence-based care have been reported, and in-hospital mortality remains high (27%-51%).1,4-9 Management recommendations are distributed between disease-specific statements and guidelines, and a dedicated and comprehensive clinical resource in this area is lacking. Thus, consolidating the evidence to define contemporary best medical and surgical CS practices for both MI-associated CS and other types of CS may be an important step in knowledge translation to help attenuate disparities in evidence-based care.Regional systems of care coupled with treatment algorithms have improved survival in high-acuity time-sensitive conditions such as MI, out-of-hospital cardiac arrest (OHCA), and trauma.10-12 Applying a similar framework to CS management may lead to similar improvements in survival, and CS systems of care are emerging within existing regional cardiovascular emergency care networks; however, guidance from a national expert group on structure and systems of care has not been available. 13,14 Accordingly, the purposes of this American Heart Association (AHA) scientific statement on CS are to summarize our contemporary understanding of the epidemiology, pathophysiology, and in-hospital best care practices into a single clinical resource document; to suggest a stepwise management algorithm that integrates medical, surgical, and mechanical circulatory support (MCS) therapies; and to propose a Mission: Lifelinesupported pathway for the development of integrated regionalized CS systems of care. DEFINITION OF CSAcute cardiac hemodynamic instability may result from disorders that impair function of the myocardium, valves, conduction system, or pericardium, either in isolation HISTORICAL PERSPECTIVESBefore the routine use of early revascularization, MIassociated CS had an in-hospital mortality exceeding 80%. A registry trial of 250 patients with acute MI described the association between bedside physical examination (Killip classification) for the as...

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“…31 Involving family caregivers, strongly advocated by participants, is generally not a part of contemporary HF care or disease management programs, which remain focused on the individual patient. Participants prefer providers familiar with patients' heart condition are involved in addressing palliative care needs.…”

Section: Implications For Hf Palliative Care Service Provisionmentioning

confidence: 99%

Giving Voice to Patients' and Family Caregivers' Needs in Chronic Heart Failure: Implications for Palliative Care Programs

Bekelman

Nowels

Retrum

et al. 2011

Journal of Palliative Medicine

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Background: The American College of Cardiology Foundation/American Heart Association (ACC/AHA) Guidelines for the Management of Heart Failure recommend palliative care in the context of Stage D HF or at the end of life. Previous studies related to heart failure (HF) palliative care provide useful information about patients' experiences, but they do not provide concrete guidance for what palliative care needs are most important and how a palliative care program should be structured. Objectives: Describe HF patients' and their family caregivers' major concerns and needs. Explore whether, how, and when palliative care would be useful to them. Design and participants: Qualitative study using in-depth interviews of 33 adult outpatients with symptomatic HF identified using purposive sampling and 20 of their family caregivers. Approach: Interviews were transcribed verbatim and analyzed using the constant comparative method. Key results: Overall, patients and caregivers desired early support adjusting to the limitations and future course of illness, relief of a number of diverse symptoms, and the involvement of family caregivers using a team approach. A diverse group of participants desired these elements of palliative care early in illness, concurrent with their disease-specific care, coordinated by a provider who understood their heart condition and knew them well. Some diverging needs and preferences were found based on health status and age. Conclusions: HF patients and their family caregivers supported early integration of palliative care services, particularly psychosocial support and symptom control, using a collaborative team approach. Future research should test the feasibility and effectiveness of integrating such a program into routine HF care.

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Making sure services deliver for people with advanced heart failure: a longitudinal qualitative study of patients, family carers, and health professionals

Cited by 66 publications

References 25 publications

Development of risk models for the prediction of new or worsening acute kidney injury on or during hospital admission: a cohort and nested study

Development of risk models for the prediction of new or worsening acute kidney injury on or during hospital admission: a cohort and nested study

Contemporary Management of Cardiogenic Shock: A Scientific Statement From the American Heart Association

Giving Voice to Patients' and Family Caregivers' Needs in Chronic Heart Failure: Implications for Palliative Care Programs

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