Home-Based Care for Patients with Lysosomal Storage Disease: Experiences in Argentina
AUTOR(ES)
Brunelli, Maria Victoria
FONTE
J. inborn errors metab. screen.
DATA DE PUBLICAÇÃO
07/03/2019
RESUMO
ABSTRACT Enzyme replacement therapy (ERT) is a long term treatment for patients who suffer from lysosomal storage disease. A transversal descriptive study was conducted to evaluate advantages and disadvantages of a home-based care program for patients with Gaucher, Fabry and Mucopolysaccharidosis II (MPS II) diseases. A survey among patients and nurses involved in healthcare delivery at home was utilized for this study. The adherence rate was 92.9% over the study period. Eighty six point nine percent chose to carry out the treatment at home and 88.5% felt that their quality of life had improved. Additional advantages reported were: comfort (77%), treatment adjustment to daily activities (69%) and flexibility (58%). Disadvantages expressed were: lack of confidence with the health care provider at home (1.6%) and a shortage of disposable materials available (1.6%). The main benefits of home-based treatment were the high treatment adherence and the improvement in quality of life.
Documentos Relacionados
- Home-based physiotherapy programmes for individuals with neurological diseases: systematic review
- Coronavirus Disease (COVID-19) Pandemic: An Opportunity Window to Implement Home-Based Cardiac Rehabilitation
- A randomized clinical trial of home-based telepsychiatric outpatient care via videoconferencing: design, methodology, and implementation
- Medication Data Collection and Coding in a Home-Based Survey of Older Adults
- Nursing diagnoses in a home-based program: cross-mapping and NANDA-I Taxonomy