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End of life secondary care resource use and costs in mycosis fungoides and Sézary Syndrome: An analysis of hospital episode statistics
Introduction
Cutaneous T-cell lymphomas (CTCL) are a rare heterogeneous sub-group of non-Hodgkin’s lymphomas with debilitating consequences. [1-3] The presentation and prognosis of CTCL can vary widely and there are several different subtypes: mycosis fungoides (MF) is the most common type of CTCL, with an incidence of 5.6 per million persons, [4,5] while Sézary Syndrome (SS) is an even rarer, more aggressive form. There is no gold standard treatment available, and the choice of therapy is likely to be influenced by many factors including the type, presentation, and severity of disease; and is potentially specific to each country. While there are limited data on real-world management, healthcare resource utilisation (HCRU) and cost of patients with MF and SS, the data on end-of-life care is further limited. Recently, based on an expert survey, increased resource use and costs in the UK have been reported near to the end of life, defined as six month prior to death. [6] Healthcare costs incurred at the end-of-life are an important input in cost-effectiveness models, especially where there are potential curative treatments available, such as allogeneic stem cell transplant in MF/SS.
Objective
To use real-world data from the NHS Hospital Episode Statistics (HES) database to describe the end-of-life clinical pathway, HCRU, and costs associated with MF and SS.
Methods
Study design
- This was a retrospective, observational cohort study.
Setting and study population
- This study involved analysis of HES, a database containing details of all inpatient admissions, accident and emergency (A&E) attendances, and outpatient appointments at NHS hospitals in England.
- All patients with at least one ICD-10 diagnosis of MF (C84.0) or SS (C84.1) in the HES database between 1st October 2010 to 31st March 2019 and recorded a death in the same period were included in the study.
- Patients were excluded if they had diagnoses for both MF (C84.0) and SS (C84.1), or diagnosis of C84.0 or C84.1 within the 18 months (18 months duration was chosen to increase confidence that the first occurrence of the ICD-10 diagnosis code represented their first ever diagnosis) before the start of the study observation period (1st October 2010 to 31st March 2019).
Data Source
- All patient records were pseudonymised; the HES data and extracted dataset (from NHS digital) contained no patient identifiable data. All HES data were held securely on approved servers once received from NHS Digital. Only those data fields required to complete the pre-specified analyses were extracted from the master HES database.
- Data extraction and analysis of HES data were performed by experienced data analysts who were responsible for ensuring that data quality was maintained throughout the project.
- Data were extracted using Microsoft SQL Server Management Studio, and Microsoft Excel 2010 and Stata v14.2 were used to prepare and carry out the statistical analyses.
Data analysis
- Each patient was tracked from their first diagnosis or first occurrence in the dataset up until their date of death. Patients were identified by their unique HES-ID code to ensure they were only counted once and to enable tracking of records over their complete treatment pathway.
- HCRU activity recorded in HES (including inpatient, outpatient, A&E or intensive-care unit [ITU] patient stays) as well as related systemic treatments were summarised using descriptive statistics for each of the 6-month periods in the 24 months prior to death.
– 6-monthly periods were defined based on the previous survey and expert opinion.
- The number and length of admissions or attendances were described per patient and only included those patients who
had some activity recorded during a specific 6-month period before death.
The total cost (£) of HCRU was estimated per patient/week and included patients who had no activity (i.e., £0 cost)
during a specific 6-month time period prior to death
Results
Patient demographics
- 1,737 patients with MF and 165 patients with SS were identified; 554 (32%) patients with MF and 88 (53%) patients with SS died in the time period and were included in this cohort. The patient demographics are summarised in Table 1.
Authors
N Muszbek, F Glen, D Heaton, L McNamara
Journal
Value in Health
Therapeutic Area
Oncology
Center of Excellence
Patient-Centered outcomes
Year
2020
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