Towards integration of palliative care in patients with chronic heart failure and chronic obstructive pulmonary disease: a systematic literature review of European guidelines and pathways

Siouta, Naouma; Beek, Karen Van; Preston, Nancy; Hasselaar, Jeroen; Hughes, Sean; Payne, Sheila; Garralda, Eduardo; Centeno, Carlos; Eerden, Marlieke van der; Groot, Marieke; Hodiamont, Farina; Radbruch, Lukas; Busa, Csilla; Csikós, Ágnes; Menten, Johan

doi:10.1186/s12904-016-0089-4

Cited by 102 publications

(109 citation statements)

References 57 publications

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“…Increasingly the importance of palliative care for non-malignant diseases has also been recognised. Given the growing proportion of older patients and the impact of advancing chronic disease, integrating palliative care alongside chronic care has been noted as an approach to support quality of life and reduce burdensome treatments [6,7,8,9,10]. …”

Section: Introductionmentioning

confidence: 99%

Ensuring Quality in Online Palliative Care Resources

Tieman

2016

Cancers

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Evidence and information is an integral part of the processes enabling clinical and service delivery within health. It is used by health professionals in clinical practice and in developing their professional knowledge, by policy makers in decision making, and is sought by health consumers to help them manage their health needs and assess their options. Increasingly, this evidence and information is being disseminated and sought through online channels. The internet is fundamentally changing how health information is being distributed and accessed. Clinicians, patients, community members, and decision makers have an unprecedented capacity to find online information about palliative care and end-of-life care. However, it is clear that not all individuals have the skills to be able to find and assess the quality of the resources they need. There are also many issues in creating online resources that are current, relevant and authoritative for use by health professionals and by health consumers. This paper explores the processes and structures used in creating a major national palliative care knowledge resource, the CareSearch website, to meet the needs of health professionals and of patients and their families and carers.

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Section: Introductionmentioning

confidence: 99%

Ensuring Quality in Online Palliative Care Resources

Tieman

2016

Cancers

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“…In such a context, understanding how to address individuals’ needs via integrated and holistic palliative care services is vital, yet one review found only 20 countries to have advanced levels of palliative care integration (about a third of countries worldwide had no known hospice or palliative care activity) [35]. Among countries working toward palliative care integration, standardization and an evidence base derived from rigorous, patient-centered assessment remain the focus of existing frameworks and calls for further work [36–38]. In this context, we believe that an experience tool for patients with serious chronic conditions in later life may help to form such an evidence base to help drive practice standards and improve care.…”

Section: Discussionmentioning

confidence: 99%

Development and validation of a new patient experience tool in patients with serious illness

Fernstrom¹,

Shippee²,

Jones³

et al. 2016

BMC Palliat Care

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BackgroundPatients with serious chronic illnesses face increasingly complex care and are at risk of poor experience due to a fragmented health system. Most current patient experience tools are not designed to address the unique care aspects of this population and the few that exist are delivered too late in the disease trajectory and are not administered longitudinally which makes them less useful across settings.MethodsWe developed a new tool designed to address these gaps. The 25 item scale was tested and refined using randomly cross-validated exploratory and confirmatory factor analyses. Participants were not yet hospice eligible but sick enough to receive benefits of a supportive care approach in the last 2 to 3 years of life. Full information maximum likelihood models were run to confirm the factor structure developed in exploratory analyses. Goodness-of-fit was assessed with the Comparative Fit Index, the Tucker-Lewis Index, and the Root Mean Square Error of Approximation. Test-retest reliability was assessed with the intraclass correlation coefficient and internal consistency of the final scale was examined using Cronbach’s alpha.ResultsExploratory factor analysis revealed three domains — Care Team, Communication, and Care Goals — after removing weak loading and cross loading items. The initial three domain measurement model suggested in the development cohort was tested in the validation cohort and exhibited poor fit X 2 (206) = 565.37, p < 0.001; CFI = 0.879; TLI = 0.864; RMSEA = 0.076. After model respecification, including removing one additional item and allowing paths between theoretically plausible error terms, the final 21 item tool exhibited good fit X 2 (173) = 295.63, p < 0.001; CFI = 0.958; TLI = 0.949; RMSEA = 0.048. Cronbach’s alpha revealed high reliability of each domain (Care Team = 0.92, Communication = 0.83, Care Goals = 0.77) and the entire scale (α = 0.91). ICC showed adequate test-retest validity (ICC = 0.58; 95% CI: 0.52–0.65) of the full scale.ConclusionsWhen administered earlier in the chronic illness trajectory, a new patient experience scale focused on care teams across settings, communication, and care goals, displayed strong reliability and performed well psychometrically.Trial registrationsThis trial (NCT01746446) was registered at ClinicalTrials.gov on November 27, 2012 (retrospectively registered).Electronic supplementary materialThe online version of this article (doi:10.1186/s12904-016-0172-x) contains supplementary material, which is available to authorized users.

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“…Italian and Swedish were excluded from this publication. There is lack of standardization and acceptance of palliative care for patients suffering with heart failure [10].…”

Section: Discussionmentioning

confidence: 99%

“…Efficient psychological, social and spiritual support of both the patient and their families throughout the course of illness trajectory [10].…”

Section: Discussionmentioning

confidence: 99%

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The Benefits of Palliative Care Interventions for Patients with Heart Failure - A Literature Review

Hnyda¹,

Avadhani²

2017

J Palliat Care Med

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Palliative care is an underused resource with the heart failure patient population. Many of these patients suffer not only from physical alignments but mental, spiritual and financial ones. Heart failure patients face many challenges such as frequent readmissions and a declining quality of life. This not only affects the patients but their families as well. Early palliative care intervention can decrease hospital readmissions and improve quality of life. Although advances in medicine have allowed for the heart failure patient to have more options in prolonging their life, sudden cardiac death may still occur. This uncertainty with the trajectory of death makes it difficult for some health care providers to initiate early discussions of palliative care. Many heart failure patients and their families see heart failure as a benign disease which makes it seem unnecessary for early palliative care interventions. Palliative care, by some people, is perceived as imminent death and not as an improvement to the quality of life. These patients are not being offered appropriate palliative care until their disease has exhausted all treatment plans. Many medical providers do not feel comfortable discussing early palliative care interventions, which in turn can lead to the lack of initiation into the patient's heart failure treatment. Implementing a multidisciplinary team approach will allow cardiologists to work with other health care team members to provide for the highest quality of life. The purpose of this paper is to review the implementation process and benefits palliative care services offered to the heart failure patient community.

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Towards integration of palliative care in patients with chronic heart failure and chronic obstructive pulmonary disease: a systematic literature review of European guidelines and pathways

Cited by 102 publications

References 57 publications

Ensuring Quality in Online Palliative Care Resources

Ensuring Quality in Online Palliative Care Resources

Development and validation of a new patient experience tool in patients with serious illness

The Benefits of Palliative Care Interventions for Patients with Heart Failure - A Literature Review

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