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Nurse-led clinic for patients with liver cirrhosis-effects on health-related quality of life: study protocol of a pragmatic multicentre randomised controlled trial.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Gastroenterology/Hepatology. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, Center for Clinical Research Dalarna.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, Center for Clinical Research Dalarna.ORCID iD: 0000-0002-9082-8017
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Haematology. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences. Dalarna University, Falun, Sweden.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Health Services Research.ORCID iD: 0000-0002-2825-1026
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2018 (English)In: BMJ Open, E-ISSN 2044-6055, Vol. 8, no 10, article id e023064Article in journal (Refereed) Published
Abstract [en]

INTRODUCTION: Liver cirrhosis affects health-related quality of life (HRQoL) even in its early stages. Morbidity is especially high when the disease decompensates and self-care actions become essential. Nurse involvement in secondary prevention in other chronic diseases has contributed to better symptom control, less need of inpatient care and improved HRQoL. In order to evaluate the impact of nurse involvement in the follow-up of patients with liver cirrhosis, we decided to compare structured nurse-led clinics, inspired by Dorothea Orem's nursing theory and motivational strategies, with a group of patients receiving standard care. The primary outcome is HRQoL and the secondary outcomes are quality of care, visits to outpatient clinics or hospitals, disease progress and health literacy.

METHODS AND ANALYSIS: This is a pragmatic, multicentre randomised controlled study conducted at six Swedish hepatology departments. Eligible patients are adults with diagnosed cirrhosis of the liver (n=500). Participants are randomised into either an intervention with nurse-led follow-up group or into a standard of care group. Recruitment started in November 2016 and is expected to proceed until 2020. Primary outcomes are physical and mental HRQoL measured by RAND-36 at enrolment, after 1 and 2 years.

ETHICS AND DISSEMINATION: The study is ethically approved by the Regional Ethical Review Board in Uppsala. The results shall be disseminated in international conferences and peer-reviewed articles.

TRIAL REGISTRATION NUMBER: NCT02957253; Pre-results.

Place, publisher, year, edition, pages
2018. Vol. 8, no 10, article id e023064
Keywords [en]
economics, health-related quality of life, liver cirrhosis, nurse-led clinic, nursing, qualituy of care
National Category
Nursing
Identifiers
URN: urn:nbn:se:uu:diva-366222DOI: 10.1136/bmjopen-2018-023064ISI: 000454739500129PubMedID: 30337316OAI: oai:DiVA.org:uu-366222DiVA, id: diva2:1263912
Available from: 2018-11-18 Created: 2018-11-18 Last updated: 2023-12-03Bibliographically approved
In thesis
1. Daily Experiences and Perceived Quality of Care for Patients with Liver Cirrhosis
Open this publication in new window or tab >>Daily Experiences and Perceived Quality of Care for Patients with Liver Cirrhosis
2024 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Aim and methods: This thesis aimed to study patients’ experiences with illness in their day-to-day lives and their perceived quality of care before and after implementing a 24-month adjunctive registered nurse-based outpatient intervention in liver cirrhosis. Qualitative data was used to explore patient perspectives on day-to-day life and healthcare experiences related to liver cirrhosis. The patient-perceived quality of care following the adjunctive registered nurse-based outpatient care was studied in a pragmatic, randomised controlled multicentre study, preceded by a study protocol.

Results: Liver cirrhosis led to physical symptoms sometimes appearing rapidly. Fatigue, fear and social stigma affected daily life, resulting in cancelled activities and creating an unpredictable daily life situation. Patients with liver cirrhosis lacked adequate support to learn about the disease and manage it. They sought a trustworthy relationship with healthcare providers. When this was lacking, they felt neglected. After 12 months, the adjunctive registered nurse-based outpatient care revealed an improvement in patient-perceived quality of care. Enhancements were observed in 7 out of 22 questionnaire items regarding: patient participation, access to outpatient care, and feeling understood. However, these improvements were not sustained after 24 months.

Conclusions: Fluctuating liver cirrhosis symptoms and constant worry significantly impact patients’ daily lives. Patients expressed a wish to be more involved in their healthcare and support in understanding and managing their illness. Structured registered nurse-based outpatient care for liver cirrhosis could complement physician-based care to meet patient desires for a more person-centred approach, continuity and care coordination. 

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis, 2024. p. 89
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 2006
Keywords
Liver cirrhosis, Multi-centre study, Nursing care, Patient experiences, Pragmatic clinical trial, Qualitative research, Quality of care
National Category
Nursing
Research subject
Caring Sciences
Identifiers
urn:nbn:se:uu:diva-517092 (URN)978-91-513-1997-1 (ISBN)
Public defence
2024-02-16, Föreläsningssalen, Falu Hospital, Falun, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2024-01-24 Created: 2023-12-03 Last updated: 2024-01-24

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Hjorth, MariaSjöberg, DanielSvanberg, AnncarinKaminsky, ElenorLangenskiöld, SophieRorsman, Fredrik

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