Methodological challenges to collecting clinical and economic outcome data: Lessons from the pilot dialysis outcomes India study.
Nephrology (Carlton)
; 24(4): 445-449, 2019 Apr.
Article
em En
| MEDLINE
| ID: mdl-29570911
ABSTRACT
AIM:
Contemporary data on clinical and economic outcomes and quality of care amongst dialysis patients in India are not available. This pilot prospective study aimed to evaluate the feasibility of data collection and follow up within routine dialysis practice to inform setting up a dialysis registry.METHODS:
An electronic instrument was developed to collect information on clinical and socio-demographic characteristics, outcome and out-of-pocket expenditure on incident patients commencing haemodialysis (HD) at two centres. Dialysis unit staff were trained in collecting and entering information on an electronic case record form. Patients were followed up at 1, 3, 6, 9 and 12 months to ascertain outcomes and treatment related costs.RESULTS:
A total of 119 patients (37 females, age 47.5 ± 17.2 years) were enrolled. After 1 year, 38 (32%) patients were continuing on HD; 35 (29%) had died, 30 (25%) underwent a kidney transplant, and 16 (13%) had stopped dialysis. We noted a high prevalence of catastrophic health expenditure. Data collection was facilitated by appointing a designated staff member who received an incentive. Collection of financial information, clinical course for patients transferring out of the primary unit and the cause of death, when it occurred out of hospital was challenging.CONCLUSION:
Prospective data collection of incident dialysis patients was feasible but is resource-intensive. High out-of-pocket costs force some patients to stop dialysis and can generate a sense of despair. Poor patient experiences and suspicion over the use of such data adversely affects collection of important clinical and health economic data.Palavras-chave
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Assunto principal:
Projetos de Pesquisa
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Coleta de Dados
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Diálise Renal
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Custos de Cuidados de Saúde
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Gastos em Saúde
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Países em Desenvolvimento
/
Nefropatias
Tipo de estudo:
Clinical_trials
/
Diagnostic_studies
/
Health_economic_evaluation
/
Incidence_studies
/
Observational_studies
/
Prognostic_studies
/
Risk_factors_studies
Limite:
Adult
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Aged
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Female
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Humans
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Male
/
Middle aged
País/Região como assunto:
Asia
Idioma:
En
Ano de publicação:
2019
Tipo de documento:
Article