Supportive and palliative care in people with cirrhosis: International systematic review of the perspective of patients, family members and health professionals

Low, Joseph; Rohde, Gudrun; Pittordou, Katherine; Candy, Bridget; Davis, Sarah; Marshall, Aileen; Stone, Patrick

doi:10.1016/j.jhep.2018.08.028

Cited by 74 publications

(86 citation statements)

References 40 publications

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“…Low et al conducted a systematic review of 19 studies reporting health care professionals' perspectives on supportive and palliative care. 45 Liver health care professionals lacked confidence and skills in discussing patients' prognoses, disease progression, and treatments, despite identifying these as information needs. They tended not to address symptom or quality of life problems unless patients raised these.…”

Section: Current Barriers To Accessing Palliative Carementioning

confidence: 99%

“…15 A systematic review by Low et al emphasized patient's lack of understanding about their disease trajectory and prognosis, often lacking awareness of the palliative nature of the disease and perceiving communication with health care professionals as poor. 45 This is compounded by the fact that patients with end-stage liver disease are more likely to be socially deprived, with poor access to health care services overall. 7, 49 The unpredictable nature of patients' disease trajectories is further compounded by a lack of validated tools to identify patients who would benefit from referral to palliative care.…”

Section: Current Barriers To Accessing Palliative Carementioning

confidence: 99%

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Emerging Role of Palliative Care in Patients with Advanced Liver Disease

Jordan

Tandon

2019

Semin Liver Dis

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Advanced liver disease is increasing in mortality and morbidity worldwide, as a result of growing alcohol consumption, obesity, and viral hepatitis infection. Alongside efforts to reduce these factors, it is clear that we must identify the considerable palliative care needs of these patients in order to improve quality of life and reduce symptom burden. Our review focuses on the current state of palliative and end-of-life care for patients with advanced liver disease, the significant associated symptom burden in this disease group, identified level of involvement and potential benefits of specialist palliative care, as well as possible barriers to accessing this care. We demonstrate that although palliative care involvement varies considerably worldwide, there is much opportunity for improvement. Further research is needed to determine new interventions and models of care that may improve access for patients with liver disease, including an expansion of providers comfortable with generalist palliative care.

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Section: Current Barriers To Accessing Palliative Carementioning

confidence: 99%

Section: Current Barriers To Accessing Palliative Carementioning

confidence: 99%

Emerging Role of Palliative Care in Patients with Advanced Liver Disease

Jordan

Tandon

2019

Semin Liver Dis

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“…The complex clinical management of advanced liver disease in addition to the functional impact of cirrhosis on activities of daily living and quality of life may result in patients with unmet practical and psychological needs. [11][12][13] In this study, we refer to the term "supportive needs" as encompassing patients' perceived needs for management of symptoms, general physical and psychological health, spiritual, practical, physical, social, sexual, information, and cultural needs. 11,14 Many patient-reported outcome measurements have been developed to evaluate specific areas and levels of need to guide patient care in the area of chronic diseases.…”

Section: Introductionmentioning

confidence: 99%

“…[11][12][13] In this study, we refer to the term "supportive needs" as encompassing patients' perceived needs for management of symptoms, general physical and psychological health, spiritual, practical, physical, social, sexual, information, and cultural needs. 11,14 Many patient-reported outcome measurements have been developed to evaluate specific areas and levels of need to guide patient care in the area of chronic diseases. For example, there are several disease-specific patient-reported measurements that assess needs in neurological conditions 15,16 and cancer care.…”

Section: Introductionmentioning

confidence: 99%

<p>Development and Evaluation of the Supportive Needs Assessment Tool for Cirrhosis (SNAC)</p>

Valery¹,

Bernardes²,

Stuart³

et al. 2020

PPA

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Background: We report the development and psychometric testing of a Supportive Needs Assessment tool for Cirrhosis (SNAC). Methods: The 50-item SNAC was administered to patients (n=465) diagnosed with cirrhosis recruited from five metropolitan hospitals in Queensland, Australia. Items were assessed for ceiling and floor effects, and exploratory factor analysis was used to assess the factor structure. Identified factors were assessed for internal consistency and convergent validity to validated psychosocial tools. Results: Exploratory factor analysis identified 4 factors (39 items), which together accounted for 49.2% of the total variance. The 39-item SNAC met the requirements of a needs assessment tool and identified a range of needs important to patients with cirrhosis that were grouped in four subscales: "Psychosocial issues", "Practical and physical needs", "Information needs", and "Lifestyle changes". Cronbach's alpha values for the four subscales ranged from 0.64 to 0.92. Convergent validity was supported by a strong correlation between the total SNAC score and that of the Chronic Liver Disease Questionnaire (CLDQ; Spearman rho −0.68; p<0.001), and moderate correlations with the Distress Thermometer (Spearman rho 0.53; p<0.001) and seven subscales of a generic health-related quality of life instrument (Short Form 36; Spearman rho ranged from −0.48 to −0.57; p<0.001). The SNAC discriminated patient groups with respect to sex (p=0.013), age group (p<0.001), and hospital admission status (admitted vs not; p<0.001). Conclusion: These data provide initial evidence for the validity and reliability of the SNAC, an instrument designed to measure type and amount of perceived unmet practical and psychological needs of people diagnosed with cirrhosis.

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“…In practice, good communication is often difficult to implement. This is highlighted in the case of delivering health care to people with cirrhosis (2), where a limited number of studies have shown inadequate doctor-patient communication (3), in which consultation times are too short for effective information exchange (2) and with too much focus on disease modification (2,4). Patients feel stigmatized when communicating with health professionals (5) because of the association of liver disease with substance misuse (6)(7)(8)(9).…”

Section: Introductionmentioning

confidence: 99%

What information do people with cirrhosis and their family members want during out-patient appointments? A qualitative study exploring the perspectives of patients, close family member and liver health professionals.

Low¹,

Davis²,

Wilson³

et al. 2019

Preprint

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Background: Good communication between health professionals and patients is important in healthcare, but difficult to implement in practice. This is highlighted in care for people with cirrhosis where patients have little understanding about their disease and feel stigmatized when communicating with health professionals. No study has explored the conversation exchanges between health professionals and patients with cirrhosis. This paper reports on secondary data analysis to explore the contents of patient doctor communication in hepatology out-patient clinics. Methods: Semi-structured interviews and focus groups were conducted with 12 patients, 5 close family members and 14 liver health professionals, aimed at exploring aspects of the consultation: questions asked or not asked during the consultation, the ease of answering questions, understanding of information received, and their preparation for the consultation. All interviews were audio-taped and data analysed using framework analysis. Results: Questions discussed centred on test results, symptoms and their management. Patients and family members felt comfortable with asking health professionals questions, but wanted better information about prognosis, the effects of medication on their symptoms and the likelihood of further deterioration in their liver disease. Patients had difficulty in understanding information received as it was couched in technical terms. Emphasis in consultations focused on the physical aspect of patient care leaving little time to discuss the psychological impact of their disease. Some clinicians felt patients should ask questions about their future, particularly about advance care plans. Key barriers in asking questions included: a) limited time for out-patient appointments, b) expectation that only medical issues could be discussed, c) fear about giving ‘negative’ information to patients, d) memory issues resulting from hepatic encephalopathy. Conclusions: Health professionals should use simple language when providing patients and their families with explanations about liver disease, its physical and psychological impact and prognosis. Information sheets about these topics should be made available for patients to take home. Doctors should be willing to explore supportive care issues with patients or consider referring patients to another health care professional with more time and expertise to discuss specific issues. Further work needed to explore the interactions between these groups using observational methods.

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Supportive and palliative care in people with cirrhosis: International systematic review of the perspective of patients, family members and health professionals

Cited by 74 publications

References 40 publications

Emerging Role of Palliative Care in Patients with Advanced Liver Disease

Emerging Role of Palliative Care in Patients with Advanced Liver Disease

<p>Development and Evaluation of the Supportive Needs Assessment Tool for Cirrhosis (SNAC)</p>

What information do people with cirrhosis and their family members want during out-patient appointments? A qualitative study exploring the perspectives of patients, close family member and liver health professionals.

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