Supportive and palliative care in people with cirrhosis: International systematic review of the perspective of patients, family members and health professionals
Author(s): ,
Paddy Stone
Affiliations:
Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, 6th Floor, Maple House, 149 Tottenham Court Road, London W1T 7NF, United Kingdom
,
Aileen Marshall
Affiliations:
Sheila Sherlock Liver Unit, Royal Free Hospital & University College London Institute of Liver and Digestive Health, UCL Royal Free Campus, Pond Street, London NW3 2QG, United Kingdom
,
Sarah Davis
Affiliations:
Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, 6th Floor, Maple House, 149 Tottenham Court Road, London W1T 7NF, United Kingdom
,
Bridget Candy
Affiliations:
Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, 6th Floor, Maple House, 149 Tottenham Court Road, London W1T 7NF, United Kingdom
,
Katherine Pittordou
Affiliations:
Whittington Health NHS Trust, Magdala Avenue, London N19 5NF, United Kingdom
,
Gudrun Rohde
Affiliations:
Faculty of Health and Sport Sciences, University of Agder and Department of Clinical Research, Sorlandet Hospital, Postboks 422, 4604 Kristiansand, Norway
Joseph T.S. Low
Affiliations:
Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, 6th Floor, Maple House, 149 Tottenham Court Road, London W1T 7NF, United Kingdom
Correspondence: Dr. Joseph Low, Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, 6th Floor, Maple House, 149 Tottenham Court Road, London W1T 7NF, United Kingdom. Tel.: +44 0207 679 9718. Fax: +44 020 767
EASL LiverTree™. Low J. Dec 1, 2018; 256767
Joseph T.S. Low
Joseph T.S. Low

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Graphical abstract

Graphical abstract

Patients have limited understanding of liver cirrhosis, its prognosis or treatment. There is patient and family dissatisfaction with the quality of information, which was perceived as being too medicalised. Addressing unmet information needs could support patients to plan their care and reduce anxiety. Earlier integration of palliative care with liver and community services could improve the quality of care for patients. Better tools assessing current and future care needs may help to identify which patients would benefit from earlier supportive and palliative care referral.

Background & Aims

People with cirrhosis have unmet needs, which could benefit from a palliative care approach. Developing effective services needs to be based on evidence from those with personal experience. This review aims to explore; patient and family perspectives of perceived needs including communication; health professionals’ perspectives on delivery of care and improving palliative care between specialities.

Methods

A literature search was conducted in Medline, Embase and CINAHL using key words reporting on the perspectives of patients with liver cirrhosis (18 years and over), family members or health professionals on the provision of care in liver cirrhosis. Study quality was assessed using the Mixed Methods Appraisal Tool. Qualitative and quantitative findings were grouped together according to the main relevant themes identified.

Results

Nineteen research studies predominantly from high-income Western countries were identified, with a total sample consisting of 1,413 patients, 31 family carers and 733 health professionals. Patients and family members had limited understanding of cirrhosis or its impact. They wanted better information about their disease, its treatment and help with psychological and practical needs. Health professionals had difficulty communicating about these issues to patients and their families. General practitioners left care predominantly to the liver clinicians, who lacked confidence to have discussions about prognosis or future care preferences. The role of palliative care was recognised as important in caring for this group through earlier integration with liver and community services.

Conclusions

Health professionals need support to improve their communication with patients, to address patients’ broader needs beyond medical treatment and to develop new models to improve palliative care coordination between different medical specialities. Future research should focus on developing communication aides, testing existing tools to identify suitable patients for supportive care and exploring robust ways of evaluating supportive care interventions, with more studies needed from middle- and low-income countries.

Registration number: PROSPERO CRD42017064770.

Lay summary

Patients and their families had a poor understanding of advanced liver disease and its impact on them. They need more information about the treatments they receive and how to get practical and psychological support. Liver specialists and GPs found it difficult to talk to patients and their families about the seriousness of advanced liver disease and the lack of healthcare options available to them if their condition gets worse. All doctors and nurses involved in the care of patients with advanced liver disease recognise that palliative and supportive care have an important role in improving patient care.

Keyword(s)
Cirrhosis, Palliative care, Supportive care, Communication
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