Objective People 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.
Design Systematic 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.
Results The 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).
Conclusions While 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.
- Hepatology < INTERNAL MEDICINE
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Strengths and limitations of this study
This systematic review comprehensively summarises reported perspectives, experiences and concerns of people who have been diagnosed with chronic liver disease (CLD) worldwide.
The data presented highlight the shortage of information regarding unmet needs of patients with CLD.
While several key domains of supportive care needs were identified, most studies included patients with hepatitis, few of them reported patient needs, and none used a validated, liver disease-specific supportive care needs assessment instrument. There is a paucity of literature describing the supportive care needs of the CLD population likely to have the most needs—namely those with cirrhosis.
Assessing the supportive care needs of people with CLD have potential utility in clinical practice for facilitating timely referrals to support services.
Chronic liver disease (CLD) is a major global cause of morbidity and mortality. The prevalence of CLD differs between countries, affecting approximately 300 million people in China,1 29 million in the European Union2 and more than 8 million cases in Australia.3 The leading causes of CLD are viral hepatitis B and C (HCV), harmful alcohol consumption and metabolic fatty liver disease associated with obesity and type 2 diabetes.1–7 Regardless of aetiology, most of the morbidity and mortality from CLD occurs among individuals with cirrhosis, who are at risk of developing complications including ascites, hepatic encephalopathy, variceal haemorrhage and liver cancer. Liver disease is the fifth greatest cause of death in the UK, where the average age of death from liver disease is 59 years, with large impacts on loss of quality adjusted life years.8 The number of individuals with advanced liver disease, liver-related deaths and healthcare costs are predicted to increase over the next decade.9–11 Despite these alarming predictions, there is inadequate awareness of the disease among the general public and health professionals, and many healthcare systems lack regional or national strategies to address or prevent the increasing burden from complicated CLD.3 ,8
People with cirrhosis must follow a complex and variable regimen of dietary restrictions, medications, laboratory testing and clinic visits. In addition, patients with decompensated cirrhosis frequently suffer debilitating complications that impact on an individual's quality of life (QoL) and activities of daily living. These impairments combined with the complex management of advanced liver disease are likely to mean that patients are faced with specific and high levels of supportive care needs.12 In contrast to other advanced end-organ disease, such as heart failure or chronic obstructive pulmonary disease, the potential of devolved models of supportive care in the community or home for patients with CLD is yet to be established. Because hospital care traditionally focuses on medical management of the major complications of portal hypertension such as ascites and variceal bleeding, it is likely that many patients’ supportive care needs remain unmet.
The term supportive care needs encompasses the physical, informational, emotional, practical, social and spiritual needs of an individual with chronic disease.13 Health needs assessment instruments are increasingly being developed to evaluate specific areas and magnitude of need as a means of improving provision of patient care and outcomes, particularly in the arena of chronic diseases such as cancer and cardiac failure.14–18 Advances in medical care have resulted in people with CLD living longer, through better management of disease complications.19 An imperative exists for a valid and reliable measure that can provide an accurate supportive care needs assessment for people with CLD.
This systematic review addresses the following questions: (1) What are the supportive care needs of people who have been diagnosed with CLD? (2) What are the domains and specific items of need most frequently reported as unmet by patients with CLD, and what is the extent of these needs? and (3) What are the measures for assessment of unmet supportive care needs of people who have been diagnosed with CLD available in the literature? This information is necessary to guide development of policies around supportive needs screening tools and to enable prioritisation of support services for patients with CLD.
A systematic review was undertaken to review and synthesise studies investigating the supportive care needs of people diagnosed with CLD. One author (PCV) searched online peer-reviewed journal articles indexed in PubMed, MEDLINE, CINAHL and PsycINFO from the earliest records until 19 September 2014. Titles and abstracts were searched for possible combinations of the terms including chronic liver disease, or chronic hepatitis, hepatitis, non-alcoholic fatty liver disease, or NAFLD, or cirrhosis, alcoholic liver disease, and unmet need, or support needs, or supportive care needs, or perceived needs, or supportive care, or needs assessment. The search was complemented by manually reviewing the references of retrieved articles for other articles of potential relevance to the research aims.
Two investigators (PCV and JM) independently reviewed all titles; those judged to be potentially helpful were examined. Data were extracted using standardised data collection forms on to a Microsoft Excel spreadsheet (Microsoft Corp, Redmond, Washington, USA). The form included record number, title, year of publication, and abstract for each study, and outcome (inclusion/exclusion) and reason for exclusion were extracted. The following selection criteria were then applied: availability of an abstract; use of primary data; published in English, Spanish or Portuguese; reporting patients’ views, perspectives, experiences, concerns; patients were adults or children; and, if reporting on patients with cystic fibrosis, the article had to focus primarily on liver disease. We excluded reviews and editorials and reports for hepatitis A, liver transplant, hepatocellular carcinoma and studies among people with cystic fibrosis that primarily examined respiratory or pancreatic disease. In particular, hepatocellular carcinoma was excluded as a diagnosis of cancer engenders specific supportive care needs around the cancer treatments and side effects. We also excluded papers where patient-reported supportive care needs (as opposed to doctor or carer-reported patient needs) were not investigated and those solely focusing on QoL.
As seen in other disease settings (eg, cancer), although QoL measures provide important insights into the problems experienced by patients, they do not reveal what patients ideally want from the healthcare system or the extent to which their needs are being satisfied.20 Furthermore, they fail to link patient's experience directly with their service desires.
Abstracts with relevant content were selected for full manuscript review. PCV and JM independently reviewed manuscripts; two other investigators (EP and NM) were available to adjudicate disagreements. Data were extracted using predesigned forms on to a Microsoft Excel spreadsheet. The following data were extracted for each study: author, year published, country, disease group, study design, data collection method, survey used for data collection (Was it validated? If yes, the details about validation were collected), number of study participants, inclusion criteria, response rate, summary of findings (key points with regard to perspectives, experiences and concerns of people with CLD), main focus of the paper (eg, needs assessment, patients’ experiences) and study limitations. Data extraction was conducted by a single reviewer (PCV), and independently verified by a second reviewer (JM; outcome (inclusion/exclusion) and reason for exclusion were recorded). Study quality was assessed against the following quality criteria: aims and/or research question stated clearly, study design, recruitment strategy stated clearly, data collection methods, analysis (sufficient presentation of data to permit assessment of analysis), and response rate and assessment of confounding for quantitative studies only. We decided to exclude from our review studies not describing at least three of these criteria. Failure to mention the quality measure in the articles was considered a failure to fulfil the criterion. A qualitative, descriptive approach was utilised to analyse and synthesise data with the reporting of most of the aforementioned details in tables 1 and 2.
The initial search yielded 2598 reports: 17 were relevant for our overview, 9 additional studies were found after reviewing the reference lists of relevant articles (figure 1; tables 1 and 2), with a total of 26 articles included in the review. Most studies included patients with hepatitis C (n=19), three included patients with cirrhosis, two with hepatitis B or C, and two included patients with hepatitis or CLD. Of studies including patients with hepatitis, in addition to the confirmation of diagnosis, in three studies participants had to be on combination therapy (interferon and ribavirin).21–23 Of the aforementioned studies, five included a mixed group of participants (not only patients). Jessop et al24 included members of hepatitis and/or liver support groups; these groups included not just patients with hepatitis, but families, friends and, in some cases, patients with other liver diseases. Rakoski et al12 included elderly people diagnosed with cirrhosis and an age-matched comparison group. Sgorbini et al23 and Bajaj et al25 included patients (hepatitis C and cirrhosis, respectively), and their partners or carers. Jennings26 included people who had abnormal laboratory tests and who were referred for further testing for diagnosis of hepatitis C. Rakoski et al12 was the only group reporting information separately for cases and controls.
Fourteen studies used quantitative methodology (table 1), 12 were cross-sectional, 1 was longitudinal and 1 was a quasi-experimental study. Sample size varied between studies with a range from 36 to 462 patients. Twelve studies (sample size range 5–70 patients) used qualitative methodology (table 2) to describe patients’ experiences, concerns, supportive care needs, perspectives of care, and information and knowledge about their disease. Four used focus groups to collect data, seven used semistructured or unstructured/in-depth interviews, and one used both focus groups and individual in-depth interviews. Many of the qualitative studies began the interview with an open-ended general question about the patients’ experience with their disease, followed up by questions or prompts addressing specific areas or topics of interest (eg, stigma, treatment).23 ,27–30
In reviewing the literature, five common key domains of supportive care needs were identified: ‘informational or educational’ (eg, educational material, educational sessions), ‘practical’ (eg, daily living, financial support), ‘physical’ (eg, reducing abdominal distention, controlling pruritus and fatigue), ‘patient care and support’ (eg, support group at the clinic, caregiver support group) and ‘psychological’ (eg, anxiety, sadness; table 3).
Most studies reported unmet needs or concerns in the ‘informational or educational’ domain (15 out of 26 studies). Need for or lack of information about their disease, treatment and tests, controlling symptoms, and disease transmission was among commonly reported concerns reported by 11.24 ,26 ,28–36 Of the five reports using a supportive care needs assessment tool to collect the data (table 3), information needs was a common concern in four studies.21 ,26 ,31 ,37 ,38 Only two studies21 ,38 reported that patients perceived themselves as having good support with regard to informational needs. Temple-Smith et al39 report mixed results for men and women, with the former denying need for information while the latter were willing to seek health information to better manage their disease.
Other domains of unmet needs or concerns were also reported. Items pertained in the ‘patient care and support’ domain were reported by eight studies, including access to a pharmacist, a nutritionist, support groups.29 ,31 ,33 ,36 ,38–41 ‘Practical needs’ including financial stress (cost of care, assistance for obtaining drug coverage plans for medication, worried about being able to provide for their family impact on activities of daily living (eg, dressing, bathing)) were reported by seven studies.12 ,21 ,23 ,25 ,27 ,31 ,34 ,42 Concerns about symptoms, treatment and prognosis, disease transmission (routes of infection, infecting others) were reported by seven studies (here grouped as ‘physical’ domain).23 ,37 ,40 ,42–44 In seven studies, patients reported fear, anxiety, sadness, feelings of isolation, or reported desire for access to psychological counselling (‘psychological’ domain).22 ,23 ,30 ,34 ,37 ,38 ,45
Of the 14 quantitative studies, 5 used a supportive care needs assessment tool to collect the data.21 ,26 ,31 ,37 Balfour et al31 used the Hepatitis C Needs Assessment Scale (HCNAS), an 11-item self-reported tool developed for their study. For the HCNAS, patients were asked to rank the importance of their healthcare needs on a five-point scale. Zandi et al37 used a needs assessment tool that consisted of a list of 20 questions related to common symptoms and management (eg, fatigue, itching, dry mouth, muscular cramps, dietary regimen). Chang et al used the Inventory of Socially Supportive Behaviours (ISSB),46 a 15-item questionnaire that asks patients to rate on a four-point scale four types of support: emotional, appraisal, informational and tangible.21 Jennings26 used a survey consisting of 13 questions including items on the educational needs of patients with HCV (educational delivery methods, interest in support groups, topics of interest related to HCV and preferred services relating to HCV). There was no evidence on literature review of further validation of any of the other needs assessment instruments. Grogan and Timmins38 used a validated survey tool (a 59-item questionnaire designed for the study) to collect data on informational and psychological support; however, the questionnaire was designed to explore patients’ level of satisfaction with support from the nurse specialist. Minuk et al44 and Alizadeh et al's43 approach for data collection was the use of an open-ended question to elicit the patient's principal concern about their disease (‘volunteered concern’), then patients were asked to rank a list of seven or eight other potential concerns. The other six studies included a mix of questions in their data collection tool, including some specific items on support needs, information needs or ability of patients to perform daily living tasks. Four studies also included questions about QoL.21 ,37 ,40 ,42
This systematic review comprehensively summarises the available literature on reported perspectives, experiences and concerns of people who have been diagnosed with CLD. The number of studies collecting patient-reported data is small, compared with either the number of reports of doctors and carer-reported supportive care needs, or those reporting QoL. In particular, there is a paucity of data on the supportive care needs of patients with advanced liver disease and cirrhosis.
Even though the number of studies was small, this review highlights some of the unmet needs of patients with CLD. Most studies were descriptive and used qualitative methodology. However, only five studies used a supportive care needs assessment tool to describe unmet needs of patients with CLD with just two having been validated. One, the ISSB, has shown to have adequate test-retest and internal consistency, although it is not a disease-specific (liver disease) needs assessment tool,46 ,47 and the other was designed to specifically assess patients’ satisfaction with information and psychological support received from the nurse specialist.26
Prior to using a health status questionnaire, it is important that the instrument is validated and is suitable for the population under study (eg, translation or rewording may be necessary).48 The Scientific Advisory Committee of the Medical Outcomes Trust49 developed comprehensive criteria to evaluate the measurement properties of a questionnaire. Eight attributes of an instrument properties to be considered when evaluating a questionnaire assessment tool include: (1) its conceptual and measurement model, (2) validity, (3) reliability, (4) responsiveness, (5) interpretability, (6) respondent and administrative burden, (7) alternative forms and (8) cultural and language adaptations (translations). Although the ISSB46 is not a liver disease-specific tool, it has adequate test-retest and internal consistency (reliability coefficient of internal consistency for the total scale was 0.89).46 ,47 The questionnaire used in the Grogan and Timmins38 study had its content validity confirmed by a panel of experts, and had an adequate reliability score (Cronbach's α=0.85).
Education is a critical component of any healthcare intervention; it has been found to improve treatment adherence, facilitate effective decision-making, reduce healthcare costs and improve health outcomes. Research shows that people diagnosed with CLD (eg, cirrhosis,50 hepatitis C51) have a poor understanding of their disease and lack adequate knowledge about important information needed to self-manage their disease. Furthermore, participation in an HCV education class has been shown to increase patients’ understanding of disease symptoms, transmission and treatment.52 A recent study has shown that a simple educational intervention (providing a concise booklet about cirrhosis and emphasising its importance) for patients with cirrhosis was associated with a 26% improvement in patient knowledge about their disease.50 Practical, physical, patient care and support, and psychological needs were also reported as important.
The role of patient education/knowledge has even more importance with the recognition that modifiable host factors can have a substantial impact on liver disease progression and treatment outcomes. In most patients with chronic hepatitis C, fibrosis progression to cirrhosis typically requires decades. However, host risk factors such as heavy alcohol consumption (>50 g/day) or increased body mass index can lead to more rapid liver disease progression.53 ,54 Similarly, in alcoholic liver disease, individuals with fibrosis who continue to drink alcohol have a high risk of disease progression.55 ,56 Improved education about risks of alcohol, obesity and physical inactivity may reduce the impact of comorbidities on disease progression. Patient education is also essential to ensure compliance with prescribed medications and continued follow-up.57 Thus, an increase in knowledge around CLD has the potential to affect behavioural change, enhance patient self-efficacy and, in turn, improve both QoL and disease progression.58
Although this review aimed at describing the unmet supportive care needs of people diagnosed with CLD, five reports included a mixed group of study participants. Nevertheless, these reports were included because they provide an insight about the complex array of concerns people living with CLD may have. Additional information could also potentially be found from patients’ Blog, or Facebook page. However, as these are not standardised they were not be included in this review.
Unmet supportive care needs are those needs which lack the level of service or support an individual perceives is necessary to achieve optimal well-being. One criterion for inclusion of articles was that it had to report the patients’ views, perspectives, experiences or concerns. In most articles included in this review, the reported unmet supportive care needs of patients are the investigators’ interpretations of patients’ needs, as patients were not specifically asked to report their perceived unmet supportive care needs or concerns, rather asked whether they had been counselled about not drinking alcohol and how to avoid transmitting the virus to other people.41 Those patients who had not been counselled may not necessarily perceive this as an unmet need or concern. In Gifford et al's40 study, a large number of women reported ever having symptoms and rated their health as ‘fair-poor’, yet some women may have received outside help or support to deal with these issues. Similarly, Rakoski et al12 reported over one-third of people diagnosed with cirrhosis had at least one impaired activity of daily living such as dressing or bathing, yet it is possible that they may also have received help and support (formal or informal care) with these activities, and therefore their supportive care needs are not unmet.
Some clinicians may perceive the social and financial domains of supportive care needs to be outside their realm of practice, but such factors can significantly complicate treatment, reduce adherence to treatment or lifestyle modification, and create management challenges. Poor understanding of medications is one key area known to increase hospitalisation. Clinicians inconsistently ask patients about their unmet supportive care needs and concerns, typically operating in a ‘reactive mode’ (eg, acting in response to patients’ pressing or self-reported problems).59 In the USA, for example, each State has a Department of Health and Human Services, where patients can access county resources (eg, case managers who can assist patients with navigating the health system). Eligible Medicare/Medicaid patients can seek public assistance or transportation to medical visits by county transportation.60 In Australia, similar arrangements are in place to defray cost for patients in rural or remote areas who are required to travel for their healthcare. It may be that having a structured, validated supportive care needs instrument specific for the assessment of supportive care needs of patients with CLD may allow clinicians and other healthcare workers (eg, nurses, dieticians) to better address deficiencies in patients’ support needs. Disease-specific supportive care needs assessments have been used widely in the heart failure setting.61 Future research could investigate the potential for a validated liver disease-specific supportive care needs assessment instrument that can potentially be administered quickly by clinical staff (eg, nursing) or self-administered by patients in the waiting room. Use of such an instrument could then prompt clinicians to be proactive in addressing patients’ unmet supportive care needs and, where appropriate, refer to support services to enhance their QoL.
While a systematic review was undertaken, using prespecified criteria, it is possible that some relevant publications were missed. Unpublished articles or non-indexed articles may have been missed. The studies included in this review varied substantially with regard to methodology. About half the articles used qualitative methodology based on smaller numbers of patients, while half used quantitative methodology. Some studies focused specifically on needs assessment21 ,26 ,30 ,31 ,37 or patients concerns,22 ,43 ,44 and the reported findings were clearly the patients’ views and perspectives of their supportive care needs. Some articles focused mostly on the patients’ health status, QoL or changes in lifestyle. These were included in this review because they reported some information about patient's unmet supportive care needs or concerns, for instance Fabris et al33 reported that most patients wanted more detailed information about HCV and its transmission. Despite the fact that much of the burden of clinical care occurs in patients with cirrhosis, only three of the papers focused specifically on that population's supportive care needs. Lastly, this review is limited by the varying quality and rigour of the included studies, which had significant heterogeneity in terms of the population group (disease, age, gender and concurrent comorbidity), numbers and types of domains interrogated.
In conclusion, this systematic review found 26 articles reporting supportive care needs among patients with liver disease, but few of them are patient-reported needs and none used a validated, liver disease-specific supportive care needs assessment instrument. Furthermore, most studies did not focus on the CLD population likely to have the most needs—namely those with cirrhosis. Development of a validated supportive care needs assessment instrument for people with CLD would not only advance understanding of patients’ unmet needs, but have potential utility in clinical practice for facilitating timely referrals to support services. Support for areas raised in this review around knowledge and information are important for both chronic disease management, and for end of life planning for patients with liver failure from CLD.
We thank D Radford-Smith who provided administrative assistance with this manuscript.
Contributors PCV and JM independently reviewed all manuscripts, and EP and NM adjudicated disagreements. PCV was responsible for data acquisition, and takes responsibility for the integrity and the accuracy of the data. PCV drafted the report, all authors have read and contributed to this manuscript's editing, have agreed to the submission to BMJ Open, and have agreed with the content and presentation of the paper.
Funding This work was supported by the National Health and Medical Research Council of Australia and The Queensland Government's Smart State Health and Medical Research Fund. PCV was supported by an Australian Research Council Future Fellowship (#FT100100511). SMM is supported by a National Health and Medical Research Council of Australia fellowship (#1016432).
Competing interests None.
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement No additional data are available.
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