Systematic review: unmet supportive care needs in people diagnosed with chronic liver disease

Abstract

ObjectivePeople with chronic liver disease, particularly those with decompensated cirrhosis, experience several potentially debilitating complications that can have a significant impact on activities of daily living and quality of life. These impairments combined with the associated complex treatment mean that they are faced with specific and high levels of supportive care needs. We aimed to review reported perspectives, experiences and concerns of people with chronic liver disease worldwide. This information is necessary to guide development of policies around supportive needs screening tools and to enable prioritisation of support services for these patients.DesignSystematic searches of PubMed, MEDLINE, CINAHL and PsycINFO from the earliest records until 19 September 2014. Data were extracted using standardised forms. A qualitative, descriptive approach was utilised to analyse and synthesise data.ResultsThe initial search yielded 2598 reports: 26 studies reporting supportive care needs among patients with chronic liver disease were included, but few of them were patient-reported needs, none used a validated liver disease-specific supportive care need assessment instrument, and only three included patients with cirrhosis. Five key domains of supportive care needs were identified: informational or educational (eg, educational material, educational sessions), practical (eg, daily living), physical (eg, controlling pruritus and fatigue), patient care and support (eg, support groups), and psychological (eg, anxiety, sadness).ConclusionsWhile several key domains of supportive care needs were identified, most studies included hepatitis patients. There is a paucity of literature describing the supportive care needs of the chronic liver disease population likely to have the most needs—namely those with cirrhosis. Assessing the supportive care needs of people with chronic liver disease have potential utility in clinical practice for facilitating timely referrals to support services.

Exploratory study into the unmet supportive needs of people diagnosed with cirrhosis in Queensland, Australia

“…A recent review of published literature on unmet needs of people with CLD included only a small number of studies conducted in Australia, which were restricted to people diagnosed with hepatitis C (one quantitative and five qualitative studies). Concerns raised by patients included in these studies fell into the informational/educational, patient care and support, practical, physical and psychological domains.…”

“…Similar to Minuk et al . and Balfour et al ., patients were then provided with a list of 10 potential concerns (informed by a systematic literature review on the supportive care needs in CLD) and asked to prioritise 5 of the most importance to them (ranked from 1 = most important to 5 = least important) without assistance from the interviewer . Clinical information was extracted from medical records.…”

“…A recent review of 26 papers, specifically concerning patients with hepatitis C, reported experiences and concerns of people diagnosed with CLD worldwide. Five key domains of supportive care needs were identified in this review: informational or educational, practical, physical, patient care and support and psychological.…”

Unmet care needs in people living with advanced cancer: a systematic review

“…Consistent with patient-centred principles of modern healthcare, unmet needs are thus self-defined: reflecting the wishes of the individual rather than clinician judgments or interpretations of global wellbeing measures (which may show poor congruence with patient priorities [4]). A specific and conditional understanding of patient-reported unmet needs can be more readily translated into suggestions for improving patient care and outcomes [5] with implications for the design and delivery of care services, reducing unnecessary service-use and associated costs [6].…”

Background and design of the symptom burden in end‐stage liver disease patient‐caregiver dyad study

“…Some evidence suggests that patients with ESLD find care, information, and symptom management offered by providers to be inadequate (Baker & McWilliam, 2003;Valery et al, 2015). In the absence of support from providers, patients learn to manage their symptoms through trial and error (Baker & McWilliam, 2003) and with the support of their informal caregivers.…”