Higher levels of supportive care needs are linked to higher health service use and cost, poor quality of life, and high distress in patients with cirrhosis in Queensland, Australia

Background:

Australians with cirrhosis have significant practical and psychosocial needs. This longitudinal study examined the association between supportive care needs and health service use and costs, and patient outcomes from June 2017 to December 2018.

Methods:

The Supportive Needs Assessment tool for Cirrhosis (SNAC), quality of life (Chronic Liver Disease Questionnaire and Short Form 36), and distress (distress thermometer) were self-reported through an interview at recruitment (n=433). Clinical data were obtained from medical records and through linkage, and health service use and costs through linkage. Patients were grouped as by needs status. Rates of hospital admissions (per person days at risk) and costs were assessed by needs status [incidence rate ratios (IRR), Poisson regression]. Multivariable linear regression was used to assess the differences in SNAC scores by quality of life and distress. Multivariable models included Child-Pugh class, age, sex, recruitment hospital, living arrangements, place of residence, comorbidity burden, and primary liver disease etiology.

Results:

In adjusted analyses, compared with patients with low/no needs, patients with unmet needs had more cirrhosis-related admissions (adjusted IRR=2.11, 95% CI=1.48–3.13; p<0.001), admissions through the emergency department (IRR=2.99, 95% CI=1.80–4.97, p<0.001), and emergency presentations (IRR=3.57, 95% CI=1.41–9.02; p<0.001). Total hospitalization costs for cirrhosis admissions were higher for those with unmet needs ($431,242 per person days at risk) compared with those with met needs ($87,363 per person days at risk, adjusted cost ratio=3.52, 95%CI=3.49–3.54; p<0.001). In multivariable analysis, increasing overall mean SNAC scores (higher needs) were correlated with poorer quality of life and higher level of distress (p<0.001 for all comparisons).

Conclusions:

Patients with cirrhosis and high unmet psychosocial needs and practical and physical needs have poor quality of life, high distress, and very high service use and costs, highlighting the importance of urgently addressing unmet needs.

INTRODUCTION

Cirrhosis is an advanced stage of chronic liver disease, and the greatest risk factor for the development of liver cancer (HCC).1–3 Although there may be a long latency period during which individuals with cirrhosis remain asymptomatic (compensated cirrhosis), the likelihood of patients with early-stage cirrhosis developing complications (decompensated cirrhosis) is high (eg, the 10-y probability of ascites is 46%).4 These complications often result in hospitalization, impaired quality of life, and high mortality.1 Chronic liver disease costs the Australian health system more than $300 million annually, with two thirds of this amount incurred by hospitals.5 In particular, patients with decompensated cirrhosis have repeated hospital admissions contributing to the high financial cost of managing chronic liver disease.6,7 In Queensland, Australia, during 2008–2016, the rate of cirrhosis hospitalizations increased by 32%, the absolute number of admissions increased by 62%, and the percentage increase was 3-fold higher in disadvantaged compared with affluent areas.8 In addition, the incidence of HCC, a malignancy with poor 5‐year survival (about 20% in developed countries), quadrupled in the past 3 decades.9–11 High disease burden and economic costs have also been reported among European countries, with the majority of economic costs incurred in secondary health care and in late disease stages.12

Patients with chronic liver diseases have significant psychosocial challenges. Alcohol use disorder, depression, anxiety, social isolation, and financial hardship aggravated by treatment-related costs, and frequent unplanned hospital admissions are common issues in this patient population.13–16 Optimal management of chronic liver disease, particularly decompensated cirrhosis, is often complex. Patients are required to follow complicated medication regimens, dietary restrictions, and have to engage in disease monitoring activities. In addition, the functional impact of advanced liver disease on activities of daily living and quality of life results in patients having many practical, psychological, and psychosocial needs.17–19 In a well-characterized cohort of Australians with cirrhosis, patients’ psychosocial needs were generally underaddressed in routine clinical hepatology care.18 Most patients included in the CirCare study18 (81%) reported high levels of unmet needs, and patients with more advanced cirrhosis and those of working age (18–64 y) had, in general, a higher level of needs than their counterparts. Unmet needs related to symptoms and disease management, and nonadherence to medications due to financial hardship can result in unplanned hospital admissions.20 Financial issues and lack of community resources can lead to delayed hospital discharge.21,22

To date, no studies have examined the association between supportive care needs and health service use and costs in patients with cirrhosis. Data in other patient populations is also scarce. High levels of unmet supportive care needs among melanoma survivors were associated with increased use of health care and support services when compared with patients with lower needs.23 People with type 2 diabetes who reported unmet psychological needs incurred a higher medical expenditure, had greater resource utilization, and higher risk of all-cause mortality compared with people with no needs.24 In another study, people with type 2 diabetes with unmet basic needs (eg, financial hardship, lack of transport for medical care) had greater health service utilization (outpatient visits, emergency department visits, and hospital admissions), more delays in refilling diabetes medication, and poorer diabetes control compared with those with no needs.25

Using data from the CirCare study, we examined the association between supportive care needs and health service use and costs, and patient outcomes, namely quality of life, distress, and 2-year survival.

METHODS

Setting and participants

The CirCare study is a multicenter longitudinal study of patients with cirrhosis recruited from 5 hospitals in Brisbane and Logan cities in the state of Queensland, Australia, from June 2017 to December 2018. Consecutive adult patients identified from appointment lists and attending Hepatology/Gastroenterology clinics or admitted with a diagnosis of cirrhosis were eligible to participate. We excluded patients if their treating clinician considered them to have a cognitive or physical impairment that could interfere with participation or if they were unable to communicate in English and an interpreter was not available to assist with the interview. A study nurse and a hepatologist assessed patients’ eligibility.

Study measurements

Sociodemographic and clinical data

Sociodemographic data were self-reported at recruitment into the CirCare study. Place of residence was categorized according to the rurality of residence [based on the Accessibility/Remoteness Index of Australia (ARIA+)]26 and the Index of Relative Socioeconomic Advantage and Disadvantage.27 ARIA+ is an index of the accessibility of areas to service centers or conversely of remoteness of areas. Geographical areas are given a score based on the road distance to service towns of different sizes, and index scores are classified into various categories. ARIA+ were categorized into 2 groups, namely: “major city area” (relatively unrestricted accessibility to a wide range of goods, services, and opportunities for social interaction, eg, Brisbane, Gold Coast, Toowoomba) and “outside major city area.” Clinical information at the time of recruitment was extracted from patients’ medical records. Severity of cirrhosis was classified using the Child-Pugh class and by absence (compensated cirrhosis) versus presence of cirrhosis complications (eg. ascites, HE). Comorbidity burden was measured using the Charlson comorbidity index.28 Death data (date and cause of death) were obtained from the Australian Bureau of Statistics. Follow-up for deaths was up to December 31, 2019.

Patient-reported outcomes

Four validated tools were used to assess patient-reported outcomes. The Supportive Needs Assessment tool for Cirrhosis (SNAC)19 was used to assess needs. The SNAC assesses patient needs across 39 items grouped in 4 subscales, namely: sychosocial issues, practical and physical needs, information needs, and lifestyle changes. Responses to each item are scored on a 5-point scale (with 0 indicating no issue with that item, no need for help; 1 indicates an issue with that item and “no” help required; 2 indicates an issue with that item and “a little” help required; “3” indicates an issue with that item and “some” help required; and 4 indicates an issue with that item and “a lot” of help required). The mean score for each subscale and the overall SNAC mean score (average of the 4 subscales) can range from 0 (indicating no issue with all items in the SNAC tool) to a potentially maximum value of 4, with higher values indicating higher levels of unmet needs. Patients were also grouped according to “need status,” defined as “with unmet needs” [needing “some/a lot” of help with at least 1 SNAC item; median score=1.00, interquartile range (IQR)=0.57–1.55] versus low/no needs (median score=0.25, IQR=0.15–0.34). Median scores for each subscale are described in Supplemental Table 1 (http://links.lww.com/HC9/A165). Health-related quality of life was assessed using the generic Short Form 36 (SF-36)29 and disease-specific Chronic Liver Disease Questionnaire (CLDQ)30. The SF-3629 comprises 36 questions categorized into 8 domains, namely: general health, physical functioning, social functioning, pain, role limitations due to physical problems (role-physical), emotional well-being, role limitations due to emotional problems (role-emotional), and vitality. Raw domain scores were transformed to range from 0 to 100, with a higher score indicating a higher health status; the overall score for each domain was calculated. The domain scores were normalized to the Australian population means and SD to calculate the Physical Component Summary (PCS) and Mental Component Summary (MCS) scores, using weights reported from factor analysis of the SF-36 items and with adjustment for inter-item correlations.31 PCS and MCS scores were transformed to have a mean of 50 and an SD of 10. The CLDQ30 measures 29 items on a 1–7 scale; the overall CLDQ score was calculated with a higher score indicating a higher health-related quality of life. Level of distress experienced by participants was assessed by the distress thermometer (DT).32 The DT measures distress on a 0–10 scale (0= no distress, 10= extreme distress).32 For the purpose of presentation and analysis, the CLDQ and DT scores were transformed from their original scales to a universal 0–100 scale with a higher score indicating a higher health status and less distress.

Health service use and costs

Health service use data were obtained using the data linkage from the Queensland Hospital Admitted Patient Data Collection database and the Emergency Data Collection database that contain information on all hospital episodes of care for patients admitted to Queensland public and private hospitals. Hospital admissions were categorized as “cirrhosis admissions” based on recorded ICD‐10‐AM codes (the Australian Modification of the 10th revision of International Classification of Diseases codes) as previously described.33 Emergency presentations were categorized as “cirrhosis-related presentations” if they had a primary or other diagnosis of cirrhosis,33 cirrhosis-related diagnosis, or cirrhosis-related complications, namely chronic hepatic failure, portal hypertension, hepatorenal syndrome, spontaneous bacterial peritonitis, ascites, variceal bleeding, HE, jaundice, or alcohol-associated presentation (eg, alcohol-associated hepatitis, alcohol-associated liver disease unspecified). Hospital data were available from CirCare recruitment to Dec-2019. The National Hospital Cost Data Collection database was the primary source of cost data for all hospital admissions at public and private hospitals. Costs included aggregated direct plus overhead costs.

Statistical analysis

Analyses were conducted using Stata/SE (Version 15; Stata Corporation, College Station, TX). A descriptive analysis was conducted to compare the sociodemographic and clinical characteristics of patients with cirrhosis according to needs status, their use of hospital service, hospital service cost, and survival.

In linear regression analysis, the scores for patient-reported outcomes (CLDQ, SF-36, DT) and hospital length of stay were used as dependent variables. Linear regression analysis (bivariable) was performed to study the influence of needs (SNAC as continuous or categorical variables), demographic and clinical variables (as independent variable) on patient-reported outcomes, and hospital length of stay. The final multivariable regression model was determined based on the results of the bivariable analysis but also taking into account our understanding of the relationships and dependencies among variables, their clinical relevance, and our previous analysis of the needs data from the CirCare study.18 The final model included Child-Pugh class, age, sex, recruitment hospital, combined variable marital/live alone (referred to as living arrangements), place of residence, Charlson comorbidity index, and primary liver disease etiology. Multivariable linear regression analyses reported in terms of adjusted β coefficients with associated 95% CIs were used to assess the independent impact of needs, demographic and clinical variables on the dependent variable of interest. In negative binomial regression analysis, hospital length of stay was used as the dependent variable. Multivariable negative binomial regression analyses reported in terms of adjusted β coefficients with associated 95% CI were used to assess the independent impact of needs, demographic and clinical variables on total length of hospital stay (TLOS), adjusting for the same covariates as the linear regression analysis. Exponential of β, representing a proportional change in TLOS, with associated 95% CI in relation to needs status was reported.

The rate of hospital admissions due to cirrhosis and emergency presentations were calculated using person days at risk (PDAR) as a denominator. PDAR included data from CirCare recruitment until the date of death, date of liver transplant, or December 2019. Poisson regression was undertaken to compare rates according to needs status (Wald tests). Incidence rate ratios (IRR) with 95% CI were reported. We reported IRRs to describe the ratio of costs of hospital admissions by needs status. Reflecting the availability of cost data, PDAR included data from CirCare recruitment until the date of death or June 2018, whichever came sooner. Cost ratios with 95% CI were reported.

Fine and Gray’s34 competing risk model was used to estimate the cumulative incidence of mortality by needs status and reported in terms of subdistribution HR (SHR) with associated 95% CI. The model incorporated liver transplant as a competing event. Differences between cumulative incidence functions were determined using Gray’s test.34 Multivariable competing risk analyses were performed to assess the association between needs status and mortality. All cases were followed from date of CirCare recruitment, when patient-reported outcomes were assessed, until date of death, date of liver transplant, or December 31, 2019, whichever came sooner. Informed by previous Australian studies which examined unmet needs,18 rate of hospital admissions,8 and survival of patients with cirrhosis, we included in the main effects model factors that could influence overall survival, such as Child-Pugh class, age, sex, recruitment hospital, living arrangements, place of residence, Charlson comorbidity index, and primary liver disease etiology.

Ethics approval

The study was conducted in accordance with both the Declarations of Helsinki and Istanbul. Approval for the study was obtained from the Human Research Ethics Committees of Metro South Health (HREC/16/QPAH/628; November 2016) and QIMR Berghofer Medical Research Institute (P2207; January 2017). All study participants provided informed written consent to participate in the study.

RESULTS

Participant characteristics

Details of the CirCare study have been previously described.19 Briefly, of the 746 patients invited to participate in the study, 581 the were interviewed (78% response). Here, we included 433 patients for whom we had data on supportive care needs, clinical data from medical records, and linked data from hospital admissions.

Most patients (84.3%; n=365) were recruited from outpatient clinics at the selected hospitals. At the time of recruitment to CirCare, patients’ mean age was 59.2 years (SD=11.0); 70.9% (n=307) were male; 43.7% (n=188) had formal education to Junior High School level or less; 34.7% (n=150) lived in most disadvantaged areas (lower 2 quintiles of socioeconomic status); and 86.0% (n=370) lived in a major city area, reflective of the study recruitment sites. Alcohol-associated cirrhosis was the primary liver disease etiology in 38.1% (n=165) of patients. Approximately two-thirds of patients had Child-Pugh A at recruitment (63.7%; n=267) and 33.9% (n=147) had at least one cirrhosis complication documented in their medical notes at recruitment (decompensated disease). Characteristics of the study population according to needs status are shown in Table 1. Compared with patients with low/no needs, patients with unmet needs were younger (58.6 vs. 61.7 y, p=0.018), with a higher proportion of females [31.3% (n=110) vs. 19.5% (n=16), p=0.034], fewer were married or had a partner (p=0.027), with a higher proportion of professionals and lower proportion of blue-collar workers (p=0.012). There was a significant difference between the 2 groups according to liver disease severity, with a higher proportion of patients with Child-Pugh B/C [40.5% (n=138) vs. 17.9% (n=14), p<0.001] and decompensated cirrhosis [38.5% (n=135) vs. 14.6% (n=12), p<0.001] in the group with unmet needs compared with low/no needs.

TABLE 1.

Patient demographic and clinical characteristics at recruitment according to need status

	Low/no needs	With unmet needs
	N=82	N=351	p a
Age (y) mean (SD)	61.7 (10.8)	58.6 (10.9)	0.018
Age group (y), n (%)
18–64	43 (52.4)	248 (70.7)
≥65	39 (47.6)	103 (29.3)
Sex, n (%)
Female	16 (19.5)	110 (31.3)	0.034
Male	66 (80.5)	241 (68.7)
Living arrangements
Married/partner	45 (54.9)	163 (46.4)	0.027
Not married/partner not live alone	11 (13.4)	97 (27.6)
Not married/partner + live alone	26 (31.7)	91 (25.9)
Education, n (%)
Junior high/less	37 (45.7)	151 (43.3)	0.69
Senior high/higher	44 (54.3)	198 (56.7)
Occupation, n (%)
Professional	18 (22.0)	131 (37.3)	0.012b
White-collar worker	20 (24.4)	48 (13.7)
Blue-collar worker	43 (52.4)	161 (45.9)
Other	1 (1.2)	11 (3.1)
Socioeconomic status, n (%)
Q1 Most affluent/Q2	40 (48.8)	182 (52.0)	0.87
Q3	12 (14.6)	48 (13.7)
Q4/Q5 Most disadvantage	30 (36.6)	120 (34.3)
Rurality of residence, n (%)
Major city area	68 (82.9)	302 (86.8)	0.36
Outside major city area	14 (17.1)	46 (13.2)
Primary liver disease etiology, n (%)
Alcohol	30 (36.6)	135 (38.5)	0.75
HCV-HBV	28 (34.1)	110 (31.3)
NAFLD/NASH	16 (19.5)	81 (23.1)
Other	8 (9.8)	25 (7.1)
Alcohol as a cofactor	58 (70.7)	238 (67.8)	0.61
NAFLD/NASH as a cofactor	37 (45.1)	170 (48.4)	0.59
Child-Pugh class, n (%)
A	64 (82.1)	203 (59.5)	<0.001
B/C	14 (17.9)	138 (40.5)
Presence of cirrhosis complications
Compensated	70 (85.4)	216 (61.5)	<0.001
Decompensated	12 (14.6)	135 (38.5)
Ascites	7 (8.5)	109 (31.1)	<0.001
Encephalopathy	2 (2.4)	36 (10.3)	0.028b
Varices	34 (41.5)	164 (46.7)	0.39
Portal hypertension	47 (57.3)	241 (68.7)	0.05
Jaundice	7 (8.5)	76 (21.7)	0.007
Comorbidities, n (%)
Charlson comorbidity index (CCI), n (%)
CCI=0 no comorbidity	30 (36.6)	118 (33.6)	0.66
CCI=1	23 (28.0)	121 (34.5)
CCI=2	17 (20.7)	59 (16.8)
CCI=3+	12 (14.6)	53 (15.1)
Diabetes	29 (35.4)	150 (42.7)	0.22
Hypertension	28 (34.1)	128 (36.5)	0.69
Dyslipidemia	17 (20.7)	86 (24.5)	0.47
Anxiety and/or depression	11 (13.4)	95 (27.1)	0.01
Body mass index, n (%)
Normal/underweight	24 (29.3)	109 (31.1)	0.83
Overweight	19 (23.2)	88 (25.1)
Obese	39 (47.6)	154 (43.9)

^a Chi-squared test for categorical variables and t-test for continuous normally distributed data.

^b Fisher exact test.

Poorer patient-reported outcomes in patients with higher supportive needs

The mean patient-reported outcome scores in patients with cirrhosis varied significantly according to tertiles of overall mean SNAC scores, with patients in the higher tertile (higher needs) having poorer health status and higher levels of distress than patients with low/no needs (Figure 1 and Supplemental Table 2, http://links.lww.com/HC9/A165). While this pattern was also seen for each of the 4 subscales (Figure 2 and Supplemental Tables 3–6, http://links.lww.com/HC9/A165), the differences were more noticeable for psychosocial issues and practical and physical needs.

FIGURE 1.

Mean patient-reported outcome scores in patients with cirrhosis according to tertiles of overall Supportive Needs Assessment tool for Cirrhosis (SNAC) scores. Note: Scores were transformed to a universal 0–100 scale with a higher score indicating a higher health status and less distress; p<0.001 for all comparisons (linear regression with tertiles of SNAC scores as independent variable). Abbreviations: CLDQ, Chronic Liver Disease Questionnaire; SF-36, Short Form 36.

FIGURE 2.

Mean patient-reported outcome scores in patients with cirrhosis according to tertiles of Supportive Needs Assessment tool for Cirrhosis scores for each subscale. Note: Scores were transformed to a universal 0–100 scale with a higher score indicating a higher health status or less distress; *p<0.001 for all comparisons except for: information needs SF-36: physical functioning p=0.030, physical composite summary p=0.010, and lifestyle changes SF-36, physical functioning, p=0.025 (linear regression). Abbreviations: CLDQ, Chronic Liver Disease Questionnaire; SF-36, Short Form 36.

In multivariable analysis, after adjustment for Child-Pugh class, age, sex, recruitment hospital, marital/live alone, place of residence, Charlson comorbidity index, and primary liver disease etiology, increasing overall mean SNAC scores correlated with poorer patient-reported outcome scores. These are depicted by negative β values (Table 2). For example, higher levels of unmet needs (higher overall mean SNAC scores) were associated with higher levels of distress (β=−22.73, 95% CI= −26.71, −18.74; p<0.001). Similarly, higher levels of unmet needs were associated with poorer quality of life scores in both the generic (SF-36) and disease-specific (CLDQ) scales, with negative β values for the total CLDQ score (β=−17.52, 95% CI=−19.56, −15.48; p<0.001), and summary mental (β=−9.98, 95% CI=−11.43, −8.52; p<0.001) and physical (β=−4.84, 95% CI=−6.41, −3.27; p<0.001) SF-36 scores.

TABLE 2.

Linear regression coefficients β from the stepwise multiple regression analyses with patient-reported outcomes as the dependent variable, and overall Supportive Needs Assessment tool for Cirrhosis scores and selected variables as independent variables

	β (95% CI)	p a
Distress thermometer	−22.73 (−26.71, −18.74)	<0.001
SF-36: Mental Composite Summary	−9.98 (−11.43, −8.52)	<0.001
SF-36: Physical Composite Summary	−4.84 (−6.41, −3.27)	<0.001
SF-36: Emotional well-being	−17.30 (−20.20, −14.40)	<0.001
SF-36: Role emotional	−21.12 (−24.67, −17.55)	<0.001
SF-36: Social functioning	−24.59 (−28.59, −20.53)	<0.001
SF-36: Vitality	−18.14 (−21.51, −14.77)	<0.001
SF-36: General health	−11.37 (−13.88, −8.86)	<0.001
SF-36: Pain	−18.65 (−22.96, −14.42)	<0.001
SF-36: Role physical	−23.83 (−29.20, −18.44)	<0.001
SF-36: Physical functioning	−12.15 (−15.85, −8.44)	<0.001
CLDQ: Total	−17.52 (−19.56, −15.48)	<0.001
CLDQ: Systemic	−13.85 (−16.37, −11.33)	<0.001
CLDQ: Activity	−17.48 (−20.48, −14.48)	<0.001
CLDQ: Abdominal	−17.04 (−20.41, −13.66)	<0.001
CLDQ: Worry	−19.27 (−22.01, −16.54)	<0.001
CLDQ: Emotional	−17.81 (−20.38, −15.24)	<0.001
CLDQ: Fatigue	−19.41 (−22.32, −16.50)	<0.001

Note: CLDQ score (1–7 scale) and distress thermometer (0–10 scale) with a higher score indicating a higher health status or less distress.

^aMultivariable regression model included overall Supportive Needs Assessment tool for Cirrhosis mean score, Child-Pugh class, age, sex, recruitment hospital, combined variable marital/live alone, place of residence, Charlson comorbidity index, and primary liver disease etiology.

Abbreviations: CLDQ, Chronic Liver Disease Questionnaire; SF-36, Short Form 36.

Higher rates of health service use in patients with higher supportive needs

During the follow-up period (from CirCare recruitment to December 2019), 36.7% of all patients had at least one cirrhosis-related admission (39.9% of patients with unmet needs vs. 23.2% of patients with low/no needs; p=0.005). Compared with patients with low/no needs and adjusted by the same covariates as previous analyses, patients with unmet needs had higher rates of cirrhosis-related admissions (adjusted IRR=2.11, 95% CI=1.48–3.13; p<0.001), hospital admissions through the emergency department (adjusted IRR=2.99, 95% CI=1.80–4.97; p<0.001), and emergency presentations (adjusted IRR=3.57, 95% CI=1.41–9.02; p<0.001) (Table 3).

TABLE 3.

Incidence rate ratio and cost of cirrhosis-related admissions or presentations according to need status overall and for each subscale

	Overall	Psychosocial needs	Practical and physical needs	Lifestyle changes	Information needs
	IRR (95% CI)a p	IRR (95% CI) a p	IRR (95% CI) a p	IRR (95% CI) a p	IRR (95% CI) a p
Data source: hospital admissionsc
Hospital admission	2.11 (1.48–3.13) <0.001	2.16 (1.72–2.72) <0.001	1.75 (1.32–2.32) <0.001	0.68 (0.55–0.84) <0.001	0.63 (0.50–0.79) <0.001
Admitted through the emergency department	2.99 (1.80–4.97) <0.001	2.72 (1.99–3.72) <0.001	2.30 (1.55–3.41) <0.001	0.76 (0.57–1.00) 0.046	0.63 (0.46-0.86) 0.003
Planned 1-day admission	2.49 (0.97–6.35) 0.057	1.89 (1.51–3.11) 0.012	1.87 (0.92–3.77) 0.083	0.40 (0.25–0.66) <0.001	0.36 (0.21–0.61) <0.001
Data source: emergency data collection
Emergency presentation	3.57 (1.41–9.02) 0.007	2.65 (1.57–4.48) <0.001	2.84 (1.42–5.66) 0.003	0.62 (0.39–0.98) 0.040	0.67 (0.41–1.09) 0.108
	CR (95% CI) a p	CR (95% CI) a p	CR (95% CI) a p	CR (95% CI) a p	CR (95% CI) a p
Data source: hospital cost data collection
Hospital admissions	3.52 (3.49–3.54) <0.001	4.93 (4.91–4.95) <0.001	1.90 (1.89–1.91) <0.001	1.08 (1.08–1.09) b <0.001	1.90 (1.89–1.91) b <0.001

Statistically significant (P<0.05) values are in bold.

^a Multivariable Poisson regression model included overall Supportive Needs Assessment tool for Cirrhosis mean score grouped as “low/no needs” versus “with unmet needs,” Child-Pugh class, age, sex, recruitment hospital, marital/live alone, place of residence, Charlson index, and primary liver disease etiology.

^b Costs were higher for patients with unmet needs despite having fewer admissions because the total length of hospital stay was higher for patients with unmet needs compared with patients with low/no needs.

Abbreviations: CR, cost ratio; IRR, incidence rate ratio.

This pattern of patients with unmet needs having higher health service use was more prominent for psychosocial needs and, to a lesser extent, for practical and physical needs. Patients with higher needs in these subscales had 2.16-fold (95% CI=1.72–2.72; p<0.001) and 1.75-fold (95% CI=1.32–2.32; p<0.001) higher rates of cirrhosis-related admissions compared with patients with low/no needs, respectively. An inverse and less noticeable association between unmet needs and rate of cirrhosis-related admissions was seen for lifestyle changes and information needs. Patients with higher needs in these subscales had 32% (IRR=0.68, 95% CI=0.55–0.84; p<0.001) and 37% (IRR=0.63, 95% CI=0.50–0.79; p<0.001) fewer cirrhosis-related admissions compared with patients with low/no needs, respectively.

In bivariable analysis, the TLOS (negative binomial mean) was 12.3 days (95% CI=8.0–18.9) for patients with low/no needs and 21.9 days (95% CI=18.1–26.6) for patients with unmet needs (p=0.039). After adjustment for the same covariates as previous analyses, TLOS was 2-fold higher and was associated with needs status with a 99% increase in TLOS for patients with unmet needs compared with low/no needs [exp(β)=1.99, 95% CI=1.08–3.68; p=0.027].

Higher costs of cirrhosis-related admissions with higher supportive needs

There was a notable difference in the cost of hospital admissions according to needs status (Table 3). Compared with those with low/no needs, in patients with unmet needs the total cost of cirrhosis admissions was 3.5-fold higher, $431,242 per PDAR versus $87,363 per PDAR (adjusted cost ratio=3.52, 95% CI=3.49–3.54; p<0.001). This pattern was more noticeable for psychosocial needs with a cost ratio of 4.93 (95% CI=4.91–4.95; p<0.001) than for the other subscales.

Survival

Overall, at the end of the follow-up period 78 (18.0%) patients were deceased (8.5% of the patients with low/no needs and 20.2% of patients with unmet needs) and 18 (4.2%) patients were transplanted (3.7% of the patients with low/no needs and 4.3% of patients with unmet needs). The median follow-up time from CirCare recruitment to date of death, date of liver transplant, or December 2019 was 1.68 years (IQR=1.11–2.13) for all patients. Comparisons of cumulative incidence for mortality according to needs status can be found in Figure 3. The probability of mortality was higher in patients with unmet needs compared with patients with low/no needs (unadjusted SHR=2.57, 95% CI=1.19–5.53; p=0.016). In multivariable analysis, after adjustment for the same variables as previous analyses, patients with unmet needs were twice as likely to die after assessment of needs compared with patients with low/no needs (SHR=2.17, 95% CI=0.98–4.82; p=0.057). However, chance could not be ruled out. Moreover, this association was statistically significant for psychosocial needs (adjusted SHR=1.80, 95% CI=1.04-3.14; p=0.036), but not for practical and physical needs (SHR=1.37, 95% CI=0.77–2.42; p=0.286), lifestyle changes (SHR=0.65, 95% CI=0.36–1.20; p=0.170), or information needs (SHR=0.86, 95% CI=0.51–1.44; p=0.568).

FIGURE 3.

Comparisons of cumulative incidence of mortality between patients with unmet needs and with low/no needs. Note: Subdistribution HR (SHR) adjusted for Child-Pugh class, age, sex, recruitment hospital, marital/live alone, place of residence, Charlson comorbidity index, and primary liver disease etiology.

DISCUSSION

This study that set out to examine the association between supportive care needs and health service use and costs, and patient outcomes in Australia, found that a higher level of unmet needs among patients with cirrhosis was associated with a significant detrimental impact on patient outcomes and health service use and expenditures. Independent of liver disease severity, patients with a higher level of unmet needs experienced twice the rate of hospital admissions, 3.6 times the rate of emergency presentations, and had longer hospital admissions compared with those with low/no needs. Higher health service use was particularly evident in patients with unmet psychosocial needs and, to a lesser extent, for practical and physical needs.

The reasons underlying the disparities in health service use and costs according to psychosocial needs and practical and physical needs status are likely to be multifactorial. First, practical and physical needs related to symptoms that are part of the disease process can lead to higher health service use. For example, medication management for patients with decompensated cirrhosis is often complex and optimal management requires coordinated follow-up in addition to patient self-management and adherence.35 An important barrier associated with poor management is low health literacy, a common finding among patients with cirrhosis.36–38 People with low health literacy have a poorer comprehension of their disease,39 and are less likely to take medications and interpret labels and health messages correctly without guidance.40 Moreover, poor knowledge about the key aspects of their liver disease and self-care tasks among 123 patients with cirrhosis was associated with greater health-care service utilization compared with those with good knowledge.41

Second, psychosocial needs can lead to delayed hospital discharge. Within the context of other disease and disability trajectories, sociodemographic factors including social vulnerability, difficulty in performing activities of daily living, family and financial issues, lack of community resources, and organizational causes related to hospital management were associated with delayed discharge.21,22 Delayed discharge accounts for 11%–30% of total admission costs, and results in cancellations of elective surgeries and other services due to lack of available hospital beds.21,42 In this study, after adjusting for factors likely to be associated with longer hospital stay such as patient age, severity of cirrhosis, and comorbidity burden, patients with higher level of unmet psychosocial needs had significantly longer total length of hospital admissions compared with patients with a lower level of needs.

Third, financial hardship due to the costs involved in managing cirrhosis is common,16,20 and can lead to nonadherence to medications (eg, dose delays, cessation).20 In the CirCare study,18 17% of patients had inadequate income to manage their cirrhosis, and 19% had decreased job performance due to health concerns. Direct out-of-pocket costs from medications, hospital visits, ongoing imaging requirements, time off work, and altered financial situation due to cirrhosis, can affect decisions (eg, delaying care-seeking, avoiding appointments/filling prescriptions), which lead to suboptimal patient outcomes.20,43 Nonadherence to medications can further exacerbate personal financial burden and health system costs with more unplanned hospital admissions and worse patient outcomes.20

The observed inverse association between unmet “lifestyle changes” and “information needs” and rate of cirrhosis-related admissions is intriguing. Although our study did not investigate reasons for this inverse association, patients who do not seek support for their information needs or lifestyle changes may be less likely to be engaged in beneficial health behaviors, contributing to higher health service use and cost.41,44 The management of cirrhosis is more effective if patients have the knowledge and skills to be actively involved in their health care. The subscale “lifestyle change” in the SNAC tool has only 2 items to encompass a range of important issues in the self-management of cirrhosis, namely exercise, weight control, and alcohol consumption (item 1), and diet (item 2). Another possible explanation for the inverse association between unmet lifestyle changes and hospital service use and cost is that this subscale in the SNAC tool does not adequately capture patients’ unmet needs. Future research will need to examine whether additional questions can accurately identify these needs.

Psychosocial needs of patients with cirrhosis are high. One-in-four patients with cirrhosis included in the CirCare study reported a moderate to high need for help with anxiety, feeling down or depressed, worry, fatigue, and daily tasks.18 There is a dearth of data on the impact of psychosocial vulnerability and commensurate need on mortality. Sepassi et al24 reported that all-cause mortality was 3.6-fold higher for people with type 2 diabetes, who reported unmet psychological needs compared with people with no needs. In a small cohort study (2016–2019) of 127 patients with decompensated cirrhosis, at the end of 12 months follow-up, 70% of patients survived.45 In this study, the 1-year survival rate in patients perceived to have inadequate global social support was 30%, compared with 73.5% in those with social support. Patients with inadequate social support were 5.5-fold more likely to die within 1 year independent of disease severity assessed by the MELD score, age, and presence of HCC. Significant differences in survival were also seen in the “emotional support” and “instrumental support” subscales of the Medical Outcome Study (MOS) Social Support Survey.46 While a validated social support assessment tool was used in this study, the MOS Social Support Survey was not specifically developed for patients with cirrhosis and, therefore, may not adequately capture social support elements most relevant to this patient population (eg, practical needs related to medications and dietary restrictions). Our study, which used a validated tool for cirrhosis (SNAC),19 showed higher levels of unmet needs that are associated with poorer survival after adjusting for key factors such as age, severity of cirrhosis assessed by Child-Pugh class, Charlson comorbidity index, and primary liver disease etiology. Patients with unmet needs were twice as likely to die within the study follow-up period compared with patients with low/no needs. Measurement of needs, in addition to other clinical prognostic factors, may be a useful marker of patient outcomes.

Our study highlights the need to consider supportive care needs as an important patient-reported outcome in people with advanced liver disease. It raises the question as to whether more effective supportive care for patients with cirrhosis can reduce health service use and expenditures, and improve patient outcomes. In other patient populations (eg, oncology, cardiovascular, and kidney diseases), social workers, as part of a multidisciplinary clinical care team, played a key role in addressing psychosocial aspects of care and improved a range of outcomes including hospitalizations, length of stay, health-related quality of life, and health service costs.47–50 Their clinical expertise and skills, in particular, psychoeducation, case management, financial navigation, linking patients with community support services, and emotional support and counseling were integral to the support and management of patients with chronic disease.51 In a review of social worker interventions for patients with cirrhosis,52 6 interventional studies were identified in which social workers conducted psychosocial interventions, coordinated referrals to support services (eg, addiction services), provided relapse prevention therapy, and practical support (eg, housing, transportation). The review highlighted the need for high-quality evidence to formally assess the impact of social workers in improving the outcomes of patients with cirrhosis.

In Australia, the current model of psychosocial support for patients with cirrhosis is fragmented. Many patients with high unmet needs are not identified,18 likely resulting in poorer patient outcomes that may be partly avoidable. Many health services employ social workers in a range of hospital settings, largely inpatient, thereby providing opportunity for referral of patients requiring psychosocial assessment and intervention. Patients with cirrhosis are often provided access to a social worker during a hospital admission requiring complex discharge planning or during workup for liver transplantation. This is late in the disease trajectory by which time patients have, or are incurring high levels of health-care use and costs. By contrast, in general, there is minimal or no structured psychosocial assessment or access to social workers in hepatology outpatient clinics when psychosocial support may impact on the patients’ illness trajectory. The potential benefits and cost-effectiveness of intervention programs that address the psychosocial needs of patients with cirrhosis by integrating social workers within a multidisciplinary hepatology clinic should be investigated.

Strengths and limitations

Our study included a comprehensive assessment of patient-reported outcomes using validated tools, assessment of clinical factors by clinicians (cirrhosis severity, etiology, comorbidities, and complications),18 and data on health service use and costs. Patients were recruited from several hepatology clinics located in major city areas, and patients with cognitive impairment or inability to communicate were excluded. Therefore, our findings may not be directly generalizable to all patients with cirrhosis in Australia, especially those from a non-English speaking background. While the SNAC was developed and validated to assess supportive care needs of patients with cirrhosis, it was not specifically designed to assess financial toxicity (eg, it does not specifically ask about financial stress). Therefore, the study may not have detected differences according to needs status. The available health care cost data did not enable a more comprehensive analysis, which could have provided further insights into specific resource allocation. Furthermore, only hospital-related health care cost data was collected. Omitted were other community, general practice, and allied health services used in private practice as well as out-of-pocket medical expenses. Data on patient-reported outcomes, namely supportive care needs, quality of life, and distress, were collected at a single point in time, limiting any inference about the relationship between unmet supportive care needs, patient outcomes, and costs measured 1–2.5 years after recruitment. Therefore, it is not possible to state with certainty that an unmet supportive care need leads to higher health service use and costs and worse patient outcomes. A patient’s physical and emotional well-being, health-related quality of life and needs may change over time. This may be particularly relevant for patients who developed complications of cirrhosis during the follow-up period. While supportive care needs can potentially be modified (eg, provision of emotional support and counseling to patients with unmet psychological need), it is not known whether modifying support may impact health care outcomes. Further studies should examine the hypothesis that modification of patient-supportive care needs can reduce health service use and improve patient outcomes. Lastly, data on patients’ use of outpatient services and primary care was not available and hence their impact on health care costs was not assessed. Despite these limitations, this study highlights important disparities in patient outcomes, patterns of health care use, and costs according to needs status.

CONCLUSIONS

Patients with cirrhosis and high unmet psychosocial needs and practical and physical needs have poor quality of life, high distress, and very high service use and costs, highlighting the importance of urgently addressing unmet needs. The findings suggest that interventions addressing unmet needs may reduce hospital health care costs. Further studies should examine whether addressing patients’ needs may be an effective strategy to promote a more cost-effective use of health-care services with fewer or shorter hospital admissions and emergency presentations.

Supplementary Material

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