L'agence de communication de Karl et de Steph est sélectionnée pour réaliser la campagne promotionnelle du nouveau projet du gouvernement. Il s'agit d'une programme de suicide assisté à destination de volontaires, visant à réduire le bilan carbone du pays et le coût de la fin de vie.
Background: Carers’ end-of-life caregiving greatly benefits society but little is known about the monetary value of this care.
Aim: Within an end-of-life cancer setting: (1) to assess the feasibility and content validity of a post-bereavement measure of hours of care; and (2) to obtain a monetary value of this informal care and identify variation in this value among sub-groups.
Design and setting: A census based cross-sectional survey of all cancer deaths from a 2-week period in England collected detailed data on caregiving activity (10 caregiving tasks and the time spent on each). We descriptively analyse the information carers provided in ‘other’ tasks to inform content validity. We assigned a monetary value of caregiving via the proxy good method and examined variation in the value via regression analysis.
Results: The majority of carers (89.9%) were able to complete the detailed questions about hours and tasks. Only 153 carers reported engaging in ‘other’ tasks. The monetary value of caregiving at end-of-life was £948.86 per week with social and emotional support and symptom management tasks representing the largest proportion of this monetary valuation. Time of recall did not substantially relate to variation in the monetary value, whereas there was a stronger association for the relationship between the carer and recipient, carer gender and recipient daily living restrictions.
Conclusion: The monetary valuation we produce for carers’ work is substantial, for example the weekly UK Carers’ Allowance only amounts to 7% of our estimated value of £948.86 per week. Our research provides further information on subgroup variation, and a valid carer time instrument and method to inform economic evaluation and policy.
BACKGROUND: Little is known about the economic consequences of living with severe multiple sclerosis (SMS).
AIMS: To assess the cost-effectiveness of a home-based palliative approach (HPA) for people with SMS (pwSMS). To assess direct healthcare costs in this population.
METHODS: PwSMS from three Italian centers received (2:1 ratio) HPA or usual care over six months. Direct healthcare costs were collected on a monthly basis. Incremental cost-effectiveness was gauged from a national healthcare system (NHS) and a personal perspective, considering the Palliative Outcome Scale-Symptoms-MS (POS-S-MS) and the EuroQol five-dimension descriptive system quality-adjusted life years (EQ-5D-3L QALYs), both completed at baseline, after three and six months.
RESULTS: Of 78 randomized pwSMS, 76 (50 HPA, 26 usual care) were analyzed. Mean QALYs were close to zero, and the mean group difference was -0.006 (95% CI -0.057 to 0.044). The mean baseline-adjusted cost difference was € -394 (95% confidence interval, CI -3,532 to 2,743). POS-S-MS cost-effectiveness showed a slight mean reduction of symptom burden (-1.9; 95% CI -1.1 to 5.0) with unchanged costs. Mean direct costs due to MS were € 23,195/year, almost equally distributed between NHS (€ 13,108) and pwSMS (€ 10,087). Personal care, medications and home rehabilitation accounted for 80% of total expenditures. Most personal care costs were covered by pwSMS, and these costs were 3/4 of pwSMS out-of-pocket.
CONCLUSIONS: The slight reduction of symptom burden produced by the HPA was not associated with an increase in costs. NHS and pwSMS almost equally sustained these costs.
TRIAL REGISTRATION: Current Controlled Trials ISRCTN73082124.
OBJECTIVES: Economic evaluations often use preference-based value sets (tariffs) for health-related quality of life to quantify health effects. For wellbeing at the end of life, issues beyond health-related quality of life may be important. Therefore, the ICECAP Supportive Care Measure (ICECAP-SCM), based on the capability approach, was developed. A validated German ICECAP-SCM version was published recently. However, tariffs for the German ICECAP-SCM are not available. Therefore, the aim was to determine tariffs for the ICECAP-SCM based on preferences of the German general population.
METHODS: An online sample of 2996 participants completed a best-worst scaling (BWS) and a discrete choice experiment (DCE). BWSs required participants to choose the best and worst statement within the same capability state, whereas DCEs required participants to trade-off between two capability states. First, BWS and DCE data were analyzed separately. Subsequently, combined data were analyzed using scale-adjusted conditional logit latent class models. Models were selected based on the stability of solutions and the Bayesian information criterion.
RESULTS: The two latent class model was identified to be optimal for the BWS, DCE, and combined data, and was used to derive tariffs for the ICECAP-SCM capability states. BWS data captured differences in ICECAP-SCM scale levels, whereas DCE data additionally explained interactions between the seven ICECAP-SCM attributes.
DISCUSSION: The German ICECAP-SCM tariffs can be used in addition to health-related quality of life to quantify effectiveness in economic evaluations. The tariffs based on BWS data were similar for Germany and the UK, whereas the tariffs based on combined data varied. We would recommend to use tariffs based on combined data in German evaluations. However, only results on BWS data are comparable between Germany and the UK, so that tariffs based on BWS data should be used when comparing results between Germany and the UK.
Background: The concept of cost-effectiveness is necessary for optimal utilization of limited health care resources. However, few studies have assessed the cost-effectiveness of palliative care using quality-adjusted life years (QALYs), considered common outcomes in health economics.
Objective: We aimed to perform a cost-effectiveness analysis of palliative care for terminal cancer patients by using QALYs.
Design: A retrospective cohort study was performed.
Setting/Patients: We included 401 patients with stage IV cancer, who were hospitalized and died at a Japanese general hospital during the period April 2014 to March 2019.
Methods: Using the hospital database, we compared the total admission costs and QALYs based on pain levels of patients admitted to the palliative care (PC) department with those of patients admitted to other usual care (UC) departments. Patients in each group were matched through propensity scores to reduce bias. Bootstrapping estimated the 95% confidence intervals (95% CIs) and the probability that PC was more cost-effective than UC.
Results: After matching, 128 patients in each group were selected. Converting 1 U.S. dollar (USD) to 100 Japanese yen, PC reduced mean total admission costs by 1732 USD (95% CI: 1584-1879) and improved mean health benefits by 0.0028 QALYs (95% CI: 0.0025-0.0032) compared with UC. Based on the Japanese cost-effectiveness threshold, there was an 82% probability that PC was more cost-effective than UC.
Conclusions: Our results indicated that admission of terminal cancer patients to the PC department was associated with improvement in cost-effectiveness. This finding could support the introduction of palliative care for terminal cancer patients. Our study was approved at St. Luke's International University (receipt number 18-R061 and at the Graduate School of Pharmaceutical Sciences, The Univesity of Tokyo (receipt number 31-29).
Background: Head and neck cancer was the fourth-most common cause of cancer death among Taiwanese men in 2018. Hospice care has been proven to reduce the use of invasive medical interventions and expenditures in caring for cancer patients.
Aim: This study examined the effects of hospice care for terminal head and neck cancer patients.
Design: A matched cohort study was used to compare the use of invasive interventions and expenditures among hospice care and nonhospice care patients.
Setting/Participants: The investigated patients consisted of patients who died of head and neck cancer in Taiwan from 2004 to 2013 and were included in the Registry for Catastrophic Illness Patients in Taiwan and the Taiwan National Health Research Insurance Database.
Results: A total of 45,948 terminal head and neck cancer patients were identified, and 9883 patients remained in each group after matching for comorbidities. After that matching, the rates of intensive care unit admission (23.9% vs. 38.94%, p < 0.0001), endotracheal intubation (10.05% vs. 31.32%, p < 0.0001), cardiopulmonary resuscitation (2.93% vs. 20.18%, p < 0.0001), defibrillation (0.51% vs. 4.36%. p < 0.0001), ventilator use (21.92% vs. 46.47%, p < 0.0001), blood transfusion (71.25% vs. 73.45%, p = 0.006), and hemodialysis (1.06% vs. 3.26%. p < 0.0001) were significantly lower in the hospice group than the nonhospice group, although the rates of parenteral nutrition for the two groups were similar (7.74% vs. 7.97%, p = 0.5432). The mean medical expenditure per person in the six months before death was 460,531 New Taiwan Dollar (NTD) for the nonhospice group and 389,079 NTD for those provided hospice care for more than three months, which was the lowest amount among various hospice enrollment durations.
Conclusions: Hospice care can effectively reduce the use of invasive medical interventions in caring for terminal head and neck cancer patients and may improve their quality of death. Moreover, hospice care enrollment for more than three months can save on unnecessary medical expenditures for terminal head and neck cancer patients.
Background: Concurrent care enables seriously ill pediatric Medicaid and Children's Health Insurance Program (CHIP) beneficiaries to continue curative treatments along with the supportive services usually associated with hospice care. Although a few studies have examined pediatric concurrent care, none has explored the economics of this care delivery approach for medically complex children.
Objective: The purpose of this study was to identify the cost components relevant for an economic analysis of pediatric concurrent hospice care and demonstrate the use of the cost components in an economic case illustration.
Methods: A scoping review of the hospice cost literature was conducted to identify article focused on hospice costs that were published in the journal literature from 2000 to 2019. A preliminary economic analysis was also conducted using a cost-minimization approach with data from a large mid-Atlantic pediatric hospice provider. We compared costs between concurrent versus standard hospice care for children.
Results: Fifteen hospice cost articles were identified and no article on concurrent care costs. Most articles in the scoping review focused on hospice personnel costs, followed by supplies/equipment, and other. Personnel and costs were higher for standard hospice children compared with concurrent care, whereas concurrent care children had higher supplies/equipment costs.
Conclusions: Identifying cost components are critical to economic analysis of pediatric concurrent care. These findings provide preliminary evidence about the difference in costs between concurrent and standard hospice care for children.
Background:There is inconsistent evidence that palliative care intervention decreases total healthcare expenditure at end-of-life for oncology patients. This inconsistent evidence may result from small sample sizes at single institution studies and disparate characterization of costs across studies. Comprehensive studies in population-based datasets are needed to fully understand the impact of palliative care on total healthcare costs. This study analyzed the impact of palliative care on total healthcare costs in a nationally representative sample of advanced cancer patients.
Methods:We conducted a matched cohort study among Medicare patients with metastatic lung, colorectal, breast and prostate cancers. We matched patients who received a palliative care consultation to similar patients who did not receive a palliative care consultation on factors related to both the receipt of palliative care and end of life costs. We compared direct costs between matched patients to determine the per-patient economic impact of a palliative care consultation.
Results:Patients who received a palliative care consultation experienced an average per patient cost of $5,834 compared to $7,784 for usual care patients (25% decrease; p < 0.0001). Palliative care consultation within 7 days of death decreased healthcare costs by $451, while palliative care consultation more than 4 weeks from death decreased costs by $4,643.
Conclusion:This study demonstrates that palliative care has the capacity to substantially reduce healthcare expenditure among advanced cancer patients. Earlier palliative care consultation results in greater cost reductions than consultation in the last week of life.
BACKGROUND: Missed documentation for critical care time (CCT) for dying patients may represent a missed opportunity for physicians to account for intensive care unit (ICU) services, including end-of-life care. We hypothesized that CCT would be poorly documented for dying trauma patients.
METHODS: Adult trauma ICU patients who died between December 2014 and December 2017 were analyzed retrospectively. Critical care time was not calculated for patients with comfort care code status. Critical care time on the day prior to death and day of death was collected. Logistic regression was used to determine factors associated with documented CCT.
RESULTS: Of 147 patients, 43% had no CCT on day prior to death and 55% had no CCT on day of death. 82% had a family meeting within 1 day of death. Family meetings were independently associated with documented CCT (OR 3.69, P = .008); palliative care consultation was associated with decreased documented CCT (OR .24, P < .001).
CONCLUSIONS: Critical care time is not documented in half of eligible trauma patients who are near death. Conscious (time spent in family meetings and injury acuity) and unconscious factors (anticipated poor outcomes) likely affect documentation.
BACKGROUND: Over 90 million Americans suffer from advanced illness (AI) and spend their last days of life in critical care units receiving costly, unwanted, aggressive medical care.
OBJECTIVE: Evaluate the impact of a specialized care model in medical/surgical units for hospitalized geriatric patients and patients with complex care requirements where designated AI beds align care with patient's wishes/goals, minimize aggressive interventions, and influence efficient resource utilization.
DESIGN: US based multi-facility retrospective, longitudinal descriptive study of screened positive AI patients in AI Beds (N = 1,237) from 3 facilities from 2015 to 2017.
RESULTS: Patient outcomes included 60% referrals to AI beds from ICU, a decrease of 39-49% in average ICU LOS, a 23% reduction of AI bed patient expirations, 9.0% referrals to hospice, and projected cost savings of $4,361.66/patient, US dollars.
CONCLUSION: Allocating AI beds to deliver care to AI patients resulted in a decreased cost of care by reducing overall hospital LOS, mortality, and efficient use of both critical care and hospital resources.
PURPOSE: The purpose of this study was to evaluate end-of-life resource utilization and costs for prostate cancer patients during the last year of life in Korea.
MATERIALS AND METHODS: The study used the National Health Information Database (NHIS-2017-4-031) of the Korean National Health Insurance Service. Healthcare claim data for the years 2002 through 2015 were collected from the Korean National Health Insurance System. Among 83,173 prostate cancer patients, we enrolled 18,419 after excluding 1,082 who never claimed for the last year of life.
RESULTS: From 2006 to 2015, there was a 3.2-fold increase the total number of prostate cancer decedents. The average cost of care during the last year of life increased over the 10-year period, from 14,420,000 Korean won to 20,300,000 Korean won, regardless of survival time. The cost of major treatments and medications, other than analgesics, was relatively high. Radiologic tests, opioids, pain control, and rehabilitation costs were relatively low. Multiple regression analysis identified age and living in rural area as negatively associated with prostate cancer care costs, whereas income level and a higher number of comorbidities were positively associated.
CONCLUSIONS: Expenditure of prostate cancer care during the last year of life varied according to patient characteristics. Average costs increased every year. However, the results suggest underutilization of support services, likely due to lack of alternative accommodation for terminal prostate cancer patients. Further examination of patterns of utilization of healthcare resources will allow policymakers to take a better approach to reducing the burden of prostate cancer care.
Health care utilization of women with breast cancer (BC) during the last year of life, together with the causes and place of death and associated expenditure have been poorly described. Women treated for BC (2014-2015) with BC as a cause of death in 2015 and covered by the national health insurance general scheme (77% of the population) were identified in the French health data system (n = 6,696, mean age: 68.7 years, SD ± 15). Almost 70% died in short-stay hospitals (SSH), 4% in hospital-at-home (HaH), 9% in Rehab, 5% in skilled nursing homes (SNH) and 12% at home. One-third presented cardiovascular comorbidity. During the last year, 90% were hospitalized at least once in SSH, 25% in Rehab, 13% in HaH and 71% received hospital palliative care (HPC), but only 5% prior to their end-of-life stay. During the last month, 85% of women were admitted at least once to a SSH, 42% via the emergency department, 10% to an ICU, 24% received inpatient chemotherapy and 18% received outpatient chemotherapy. Among the 83% of women who died in hospital, independent factors for HPC use were cardiovascular comorbidity (adjusted odds ratio, aOR: 0.83; 95%CI: 0.72-0.95) and, in the 30 days before death, at least one SNH stay (aOR: 0.52; 95%CI: 0.36-0.76), ICU stay (aOR: 0.36; 95%CI: 0.30-0.43), inpatient chemotherapy (aOR: 0.55; 95%CI: 0.48-0.63), outpatient chemotherapy (aOR: 0.60; 95%CI: 0.51-0.70), death in Rehab (aOR: 1.4; 95%CI: 1.05-1.86) or HAH (aOR: 4.5; 95%CI: 2.47-8.1) vs SSH. Overall mean expenditure reimbursed per woman was €38,734 and €42,209 for those with PC. Women with inpatient or outpatient chemotherapy during the last month had lower rates of HPC, suggesting declining use of HPC before death. This study also indicates SSH-centered management with increased use of HPC in HaH and Rehab units and decreased access to HPC in SNH.
BACKGROUND/OBJECTIVES: To evaluate differences in end-of-life cost trajectories for cancer patients treated through Medicare versus by the Veterans Health Administration (VA).
DESIGN: A retrospective analysis of VA and Medicare administrative data from FY 2010 to 2014. We employed three-level generalized estimating equations to evaluate monthly cost trajectories experienced by patients in their last year of life, with patients nested within hospital referral region.
SETTING: Care received at VA facilities or by Medicare-reimbursed providers nationwide.
PARTICIPANTS: A total of 36,401 patients dying from cancer and dually enrolled in VA and Medicare.
MEASUREMENTS: We evaluated trajectories for total, inpatient, outpatient, and drug costs, using the last 12 months of life. Cost trajectories were prioritized as costs are not directly comparable across Medicare and VA. Patients were assigned to be VA-reliant, Medicare-reliant or Mixed-reliant based on their healthcare utilization in the last year of life.
RESULTS: All three groups experienced significantly different cost trajectories for total costs in the last year of life. Inpatient cost trajectories were significantly different between Medicare-reliant and VA-reliant patients, but did not differ between VA-reliant and Mixed-reliant patients. Outpatient and drug cost trajectories exhibited the inverse pattern: they were significantly different between VA-reliant and Mixed-reliant patients, but not between VA-reliant and Medicare-reliant patients. However, visual examination of cost trajectories revealed similar cost patterns in the last year of life among all three groups; there was a sharp rise in costs as patients approach death, largely due to inpatient care.
CONCLUSION: Despite substantially different financial incentives and organization, VA- and Medicare-treated patients exhibit similar patterns of increasing end-of-life costs, largely driven by inpatient costs. Both systems require improvement to ensure quality of end-of-life care is aligned with recommended practice.
Objective: To explore differences in end-of-life healthcare utilisation and medication costs between patients with haematological malignancies and patients with solid tumours.
Methods: Data on deceased patients with cancer were selected from the sample cohort data of health insurance claims from 2008 to 2015 in South Korea. They were categorised into two groups: patients with haematological malignancies and patients with solid tumours. Longitudinal data comprised the patient-month unit and aggregated healthcare utilisation and medication cost for 1 year before death. Healthcare utilisation included emergency room visits, hospitalisation and blood transfusions. Medication costs were subdivided into anticancer drugs, antibiotics, opioids, sedatives and blood preparation. Generalised linear mixed models were used to evaluate differences between the two groups and time trends.
Results: Of the 8719 deceased patients with cancer, 349 died from haematological malignancies. Compared with solid tumours, patients with haematological malignancies were more likely to visit the emergency room (OR=1.36, 95% CI 1.10 to 1.69) and receive blood transfusions (OR=5.44, 95% CI 4.29 to 6.90). The length of hospitalisation of patients was significantly different (difference=2.49 days, 95% CI 1.75 to 3.22). Medication costs, except for anticancer treatment, increased as death approached. The costs of antibiotics and blood preparations were higher in patients with haematological malignancies than in those with solid tumours: 3.24 (95% CI 2.14 to 4.90) and 4.10 (95% CI 2.77 to 6.09) times higher, respectively.
Conclusions: Patients with haematological malignancies are at a higher risk for aggressive care and economic burden at the end of life compared with those with solid tumours. Detailed attention is required when developing care plans for end-of-life care of haematological patients.
Objectives: To analyse healthcare utilisation and costs in the last year of life in England, and to study variation by cause of death, region of patient residence and socioeconomic status.
Methods: This is a retrospective cohort study. Individuals aged 60 years and over (N=108 510) who died in England between 2010 and 2017 were included in the study.
Results: Healthcare utilisation and costs in the last year of life increased with proximity to death, particularly in the last month of life. The mean total costs were higher among males (£8089) compared with females (£6898) and declined with age at death (£9164 at age 60–69 to £5228 at age 90+) with inpatient care accounting for over 60% of total costs. Costs decline with age at death (0.92, 95% CI 0.88 to 0.95, p<0.0001 for age group 90+ compared with to the reference category age group 60–69) and were lower among females (0.91, 95% CI 0.90 to 0.92, p<0.0001 compared with males). Costs were higher (1.09, 95% CI 1.01 to 1.14, p<0.0001) in London compared with other regions.
Conclusions: Healthcare utilisation and costs in the last year of life increase with proximity to death, particularly in the last month of life. Finer geographical data and information on healthcare supply would allow further investigating whether people receiving more planned care by primary care and or specialist palliative care towards the end of life require less acute care.
OBJECTIVE: To assess the effectiveness of home-based palliative care (HBPC) on reducing hospital visits and whether HBPC lowered health care cost.
METHOD: We searched six bibliographic databases (Embase (Ovid); Cochrane Central Register of Controlled Trials; Medline (Ovid); PubMed; Web of Science Core Collection; and, CINAHL) until February 2019 and performed a narrative synthesis of our findings.
RESULTS: Of the 1,426 identified references, 21 articles based on 19 unique studies met our inclusion criteria, which involved 92,000 participants. In both oncological and non-oncological patients, HBPC consistently reduced the number of hospital visits and their length, as well as hospitalization costs and overall health care costs. Even though home-treated patients consumed more outpatient resources, a higher saving in the hospital costs counterbalanced this. The reduction in overall health care costs was most noticeable for study periods closer to death, with greater reductions in the last 2 months, last month, and last two weeks of life.
SIGNIFICANCE OF RESULTS: Stakeholders should recognize HBPC as an intervention that decreases patient care costs at end of life and therefore health care providers should assess the preferences of patients nearing the end-of-life to identify those who will benefit most from HBPC.
In Korea, a substantial proportion of long-term care insurance (LTCI) beneficiaries die within 1 year of seeking the benefit. This study was conducted to evaluate the pattern of medical care use and care cost during the last year of life among Korean LTCI beneficiaries between 2009 and 2013 using the national claims data. The National Health Insurance's Senior (NHIS-Senior) cohort was used for this retrospective study. The participants were LTCI beneficiaries aged 65 or over as of 2008 who died between 2009 and 2013 (N = 30,433). Medical costs during the last year of life were highest for those who used both medical care services and long-term care (LTC) services and increased as death approached. About half of the participants were hospitalized at the time of death. The use of LTC services at the time of death increased from 13.0 to 22.8%, while those who died at home decreased from 34 to 20%. This study suggests that the use of LTC services did not reduce medical costs by substituting unnecessary inpatient hospitalization. Quality of dying should be considered one of the goals of older adult care, and provisions should be made for palliative care at home or LTC facilities.
Background: There is paucity of data on the potential value of early palliative home care for patients with hematologic malignancies.
Objective: To compare costs, use of resources, and clinical outcomes between an early palliative home care program and standard hospital care for active-advanced or terminal phase patients.
Patients and Methods: In this real-life, nonrandomized comparative study, the allocation of advanced/terminal phase patients to either home or hospital was based on pragmatic considerations. Analysis focused on resources use, events requiring blood unit transfusions or parenteral therapy, patient-reported symptom burden, mean weekly cost of care (MWC), cost-minimization difference, and incremental cost-effectiveness ratio (ICER).
Results: Of 119 patients, 59 patients cared at home were more debilitated and had a shorter survival than the 60 in hospital group (p = 0.001). Nevertheless, symptom burden was similar in both groups. At home the mean weekly number of transfusions (1.45) was lower than that at hospital (2.77). Higher rate of infections occurred at hospital (54%) versus home (21%; <0.001). MWC for hospitalization was significantly higher in a 3:1 ratio versus home care. Compared with hospital, domiciliary assistance produced a weekly saving of € 2314.9 for the health provider, with a charge of € 85.9 for the family, and was cost-effective by an ICER of € -7013.9 of prevented days of care for avoided infections.
Conclusions: Current findings suggest that costs of early palliative home care for patients with hematologic malignancies are lower than standard hospital care costs. Domiciliary assistance may also be cost-effective by reducing the number of days to treat infections.
BACKGROUND: The high level of medical spending at the end of life is well-documented, but whether there is any real potential for cost reductions there is still in question, and studies have tended to overlook the costs of care.
AIM: To identify the most common health care spending trajectories over the last five years of life among older Danes, as well as the determinants of following a given trajectory.
METHODS: We linked Danish health registries to obtain data on all health care expenditure (including hospital treatment, prescription drugs, primary care and costs of communal care) over the last five years of life for all Danish decedents above age 65 in the period 2013 through 2017. A latent class analysis identified the most common cost trajectories, which were then related to socio-economical characteristics and health status at five years before death.
RESULTS: Total health care expenditures in the last five years of life were largely independent of age and cause of death. Costs of home care and residential care increased steeply with age at death whereas hospital costs decreased correspondingly. We found four main spending trajectories among decedents: 3 percent followed a late-rise trajectory, 11 percent had accelerating costs, and two groups of 43 percent each followed moderately or consistently high trajectories. The main predictor of total expenditure was the number of chronic diseases.
INTERPRETATION: Spending at the end of life is largely determined by chronic disease, and age and cause of death only determine the distribution of expenses into care and cure.
BACKGROUND: Many families coping with serious illness report experiencing financial burden, which negatively impacts coping and quality of life. Financial burden, however, is a complex construct that has been inconsistently operationalized in the literature.
AIM: To review the available literature to identify, and describe the properties of, measurement tools or scales used to assess financial burden, including financial stress and strain, for families dealing with serious illness.
DESIGN: A systematic review.
DATA SOURCES: Six databases were searched for articles published between 2006 and 2020. The review included studies in English, that reported empirical data, and used at least one measure of financial burden. To obtain a full copy of measures, an environmental scan was conducted.
RESULTS: A total of 31 measures were included. Only five of the total were designed for patient self-report, 23 of the total were designed for caregiver report. Whereas 11 measures relied on a single-item, 17 were multi-item. The remaining measures provided no information about target population and items. The most popular measures-based on Google Scholar citations-tended to only include one financial burden item. Given the complexity of financial burden, and its subjective and objective aspects, the utility of these single item measures remains questionable. Also, although patients may experience financial burden, there is a lack of patient-reported measures.
CONCLUSION: To measure financial burden, we identified a need to develop and test multi-item measures, measures appropriate for patient populations and greater attention to the temporal aspects of self-report assessments.