Quality of Care and Rehospitalization Rate in the Last Stage of Disease in Brain Tumor Patients Assisted at Home: A Cost Effectiveness Study

Abstract

Despite aggressive multimodality treatment the prognosis of patients with primary brain tumors (BT) remains poor. At present, there are no data about the role of palliative home-care services and their impact on quality of care. We report the results of a pilot project of palliative home care for BT patients started in 2000 in the National Cancer Institute Regina Elena of Rome. We report also the result of a cost/effectiveness analysis utilizing administrative data on re-hospitalization rate in the last two months of life. Methods: Since October 2000 until December 2009, 572 patients have been followed by our home care staff. Among 394 patients who died, 276 (70%) were followed at home until death. A cost/effectiveness analysis was carried out evaluating the rehospitalization rate in the last 2 months of life in a subgroup of patients (group 1 assisted at home, 72 patients; group 2 not assisted at home, 71). The number of hospital readmission in the last 2 months of life, and length and cost of hospitalization were retrospectively analyzed from hospital discharge records. Results: Hospitalization rate of group 1 (16.7%) was lower than group 2 (38%) (95% CI: 0.18–0.65, p = 0.001). Costs of hospitalization also differed substantially: 517 € (95% CI: 512–522) in group 1 vs. 24,076 € (95%: 24,040–24,112€) in group 2. Conclusion: Home-care models may represent an alternative to in-hospital care for the management of brain tumor patients and may improve the end-of-life quality of care.

Introduction

In spite of aggressive multimodality treatment with surgery, radiotherapy, and chemotherapy, the prognosis of patients with primary or metastatic brain tumors (BTs) remains poor, especially for those affected by malignant gliomas.^1,2 While developments of more active treatments are ongoing, physicians looking after BT patients have the important role of providing effective and adequate supportive care for symptoms and complications that may result directly or indirectly from the tumor. However, there is growing concern about the quality of care given at the end of life (EoL) in cancer patients. Existing data in cancer patients suggests that too many patients do not receive adequate palliative care in the last stage of disease.^3,4 From diagnosis to the EoL, care needs of these patients are high, and sometime underestimated. Clinical symptoms (such as motor, visual, and communication impairment) and low quality of life (QoL) are typical features of BTs, already present in early phases of disease.² Needs of care increase in the last stage of disease with high incidence of neurological (epilepsy, headache, drowsiness, agitation and delirium, cognitive deficits, dysphagia) and respiratory (lung edema, dyspnea, death rattle) symptoms,^5–7 often inducing caregivers and/or family members to hospitalize the patient. Yet, there are only few studies investigating the economic impact of BTs in Europe. A recent meta-analysis reports that BTs across Europe in 2004 averaged 39,000 € per case. The huge cost and burden of BTs call for increased efforts in research, health care, and teaching.⁸

There is increasing attention to the need for improving quality of care in BT patients; however there are no data about the role of palliative care services and home-care models and their impact on quality of care and economic cost.

The main aim of the study was to evaluate the effectiveness of a home-care model of assistance in reducing the rehospitalization rate; the model's cost effectiveness was assessed based on administrative data on rehospitalization rate in the last two months of life in a subgroup of patients compared with a control group of BT patients not receiving home-care assistance at the EoL.

Methods

In 2000 at Regina Elena National Cancer Institute of Rome a pilot project, “Palliative home-care for neuro-oncological patients” was started supported by the regional health system. The staff employed one neurologist, two physiotherapists, two psychologists, one social worker, and four specialist nurses. The staff was stable throughout all periods of the project. Home assistance for patients discharged included neurologic survey, nursing assistance, neuro-rehabilitation, psychological support, and social worker support for patients and family. In the late stages of disease the intensity of assistance increased and patients received home visit by home-care staff at least every two days. Characteristics of patients, incidence of neurological symptoms, and complications in the last stage of disease were collected from home-care clinical records. A cost effectiveness analysis was performed in a subgroup of glioblastoma (GBM) patients, evaluating the rehospitalization rate in the last two months of life. The cost effectiveness analysis was carried out in a consecutive series of patients discharged after surgical procedures for GBM January to December 2006 by our institution (group 1). All patients of group 1 received home-care assistance. The control group was represented by GBM patients discharged in the same period of time from the neurosurgical ward of Policlinico Umberto I, Sapienza University of Rome (group 2 was not assisted at home). Data regarding the number of hospital readmissions in the last two months of life, length and cost of hospitalizations in the two groups of patients were analyzed from hospital discharge records stored in the database of the regional public health agency (Agenzia di Sanità Pubblica-ASP).

Statistical analysis

Comparison between the two groups was performed by using a chi-square test (for categorical variables), or the Student t test (for continuous variables). A Poisson regression analysis was run to compare the hospitalization rate between the two groups. All p-values less than 0.05 (two-sided) were considered statistically significant.

Results

From October 2000 until December 2009, 572 patients (female 269, male 303), mainly diagnosed as affected by GBM, have been assisted at home by our home-care model. In Table 1 we report the characteristics of these patients. Mean length of home assistance was 182 days. The intensity of care, in terms of home visit frequency, varies in different stages of disease. Table 2 reports the home-care activity. Most frequent symptoms during the course of disease were: epilepsy in 211 cases (37%), pulmonary infections in 60 (10.6%), deep venous thrombosis in 55 (9.7%) with embolic complications in 15 (2.6%), diabetes due to chronic steroid treatment in 48 (8.4%), psychiatric syndromes in 31 (5.7%), and 24% presented adverse effects to medication (chemotherapy, antiepileptic drugs, steroids). Among 394 patients who died, 276 (70%) were followed at home until death; 98 (30%) died in hospice or hospital.

Table 1.

Characteristics of Patients

Histology (572)
Malignant glioma	411
Brain metastases	93
Other (primary central nervous system lymphoma [PCNSL], Medulloblastoma)	68
Sex	Male 303 (53%)
	Female 269 (47%)
Mean age	50 y
Death	394

Table 2.

Home-Care Activity

Patients enrolled	572
Home visits (total)	20,400
Neurological visits	3475
Rehabilitation interventions at home	6798
Psychological provider accesses	3475
Nurse accesses	6716
Number of deaths (% at home)	394 (70%)
Length of home assistance (median, months)	5.5

Cost effectiveness study

For the cost effectiveness study, 72 (42 M, 30 F) patients were assigned to group 1 (assisted at home) and 71 (39 M, 32 F) were assigned to group 2 (control group, not assisted at home).

All patients were affected by GBM. Mean age at diagnosis in the two groups was not different (61.9±14.6 versus 64.7±8.1; p=0.1).

Overall, 141 deaths occurred among patients discharged by the two units in 2006. Median survival time was not statistically different between the two groups (13.2±16 months in group 1; 11.2±7.7 months in group 2; p=0.2).

In the last month of life, 6 patients in group 1 and 19 in group 2 were rehospitalized. Crude hospitalization rate of group 1 was lower than for group 2 (8.3% versus 26.8%), while Poisson regression age- and sex-adjusted Incidence Rate Ratio (IRR) for group 1 compared to group 2 was 0.29 (95% CI: 0.12–0.74; p=0.009).

Results did not change substantially when the analysis was performed over a two-month period before death: 16.7% (12) of patients belonging to group 1 were rehospitalized (11 patients once, 1 twice), vs. 38% (27) of group 2 (22 patients once, 3 twice, 1 three times, 1 five times). IRR was 0.35 (95% CI: 0.18–0.65; p=0.001).

Mean hospitalization duration in the month before death in group 1 (0.8 days; 95% CI: 0.6–1.0) was lower than in group 2 (2.5 days; 95% CI: 2.1–2.9). The costs of hospitalization also differed substantially: 517 € (95% CI: 512–522) in group 1 versus 24,076 € (95% CI: 24,040–24,112) in group 2.

Discussion

Findings from our study support the usefulness of a home-care model dedicated to neuro-oncological patients. The cost effectiveness analysis showed that the hospital readmission rate in the last month of life, the median time spent in hospital, and the related costs were significantly lower in the group of patients receiving home-care assistance than in the control group. We suppose that the higher rehospitalization rate observed in patients not included in palliative home-care programs could be mainly due to the lack of control of symptoms. As a consequence, a greater economic burden on the health system and the worsening of patient quality of EoL care was observed in the control group.

To date, palliative care in neuro-oncologic patients and the ongoing needs for care from discharge to the terminal phase of disease are not well documented.⁹ Existing data in cancer patients suggests that too many patients do not receive adequate palliative care in the last stage of disease.^10–14 In our population of BT patients we observed a high incidence of distressing symptoms that may influence the QoL during the course of disease and the process of dying. In order to allow the patient to experience a peaceful death, control of pain, confusion, agitation, delirium, or seizures requires specific palliative interventions. The main goals of palliative care and EoL care in brain tumor patients are to offer adequate symptom control, relief of suffering, avoiding inappropriate prolongation of dying, and to support psychological and spiritual needs of patients and families. The lack of control of symptoms in patients not included in palliative home-care programs often lead to rehospitalization with an increase in health system economic cost and worsening of patient QoL.

As observed in our population, the high rate of patients dying at home may be considered an indicator of good quality of EoL care.¹⁵ Strategies to improve continuity of care and decrease rehospitalization are becoming increasingly important both for improving the quality of care of cancer patients and for reducing the economic cost of the health care system.¹⁶

The complex needs of patients with advanced BT require management of neurological deterioration, clinical complications, rehabilitation, and psychosocial problems with a multidisciplinary approach performed by a well-trained neuro-oncological team.^17,18

Future clinical research strategies in neuro-oncology should include new models of care for BT patients, with special attention to palliative home-care models. Moreover, the effectiveness of home-care programs and their impact on outcome and QoL should be better validated.

In conclusion, palliative programs and home-care models of assistance may represent an alternative to in-hospital care for the management of patients with BT and may improve the quality of care, especially in the last stage of disease.

Acknowledgment

The neuro-oncology home-care program is supported by Latium Regional Health System (Regione Lazio, Italy) funds.

Footnotes

Author Disclosure Statement

All authors have nothing to disclose.

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