Do patients with Duchenne muscular dystrophy receive the palliative care approach?
BACKGROUND: Palliative care (PC) is indicated for Duchenne muscular dystrophy (DMD), however, access to this approach is difficult. PURPOSE: To verify whether patients with Duchenne muscular dystrophy (DMD) received the PC approach and evaluate the perceptions of health professionals about PC. M...
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| Format: | Article |
| Language: | English |
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Via Medica
2025-01-01
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| Series: | Palliative Medicine in Practice |
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| Online Access: | https://journals.viamedica.pl/palliative_medicine_in_practice/article/view/100494 |
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| _version_ | 1849233011359350784 |
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| author | Mariana Angélica de Souza Leon Elisangela Aparecida da Silva Lizzi Sara Cristina Pantoni Viana Claudia Ferreira da Rosa Sobreira Ana Cláudia Mattiello-Sverzut |
| author_facet | Mariana Angélica de Souza Leon Elisangela Aparecida da Silva Lizzi Sara Cristina Pantoni Viana Claudia Ferreira da Rosa Sobreira Ana Cláudia Mattiello-Sverzut |
| author_sort | Mariana Angélica de Souza Leon |
| collection | DOAJ |
| description | BACKGROUND: Palliative care (PC) is indicated for Duchenne muscular dystrophy (DMD), however, access to this approach is difficult.
PURPOSE: To verify whether patients with Duchenne muscular dystrophy (DMD) received the PC approach and evaluate the perceptions of health professionals about PC.
METHODS: General information about the patient, interventions used to treat them, and PC approach were collected from the medical records. Health professionals completed a questionnaire designed to assess their knowledge about PC concepts. Data were analyzed descriptively.
RESULTS: Twenty-five cases were analyzed. Patients received the multidisciplinary approach (84%) and 12% PC approach. Among the 58 professionals interviewed, 50% were unaware of PC assessment instruments, and 34.5% answered “no” or “I do not know” to the statement “Patients with DMD should receive PC since diagnosis”.
CONCLUSIONS: The isolated implementation of strategies aimed at improving the quality of life for DMD patients does not constitute an effective inclusion of PC in clinical practice. To effectively incorporate the PC approach in clinical practice, healthcare professionals must be sufficiently trained. |
| format | Article |
| id | doaj-art-efe1723f67a7475f88a9f30a88a92a74 |
| institution | Kabale University |
| issn | 2545-0425 2545-1359 |
| language | English |
| publishDate | 2025-01-01 |
| publisher | Via Medica |
| record_format | Article |
| series | Palliative Medicine in Practice |
| spelling | doaj-art-efe1723f67a7475f88a9f30a88a92a742025-08-20T14:37:53ZengVia MedicaPalliative Medicine in Practice2545-04252545-13592025-01-0119210.5603/pmp.100494Do patients with Duchenne muscular dystrophy receive the palliative care approach?Mariana Angélica de Souza Leon0https://orcid.org/0000-0003-4274-1301Elisangela Aparecida da Silva Lizzi1https://orcid.org/0000-0001-7064-263XSara Cristina Pantoni Viana2https://orcid.org/0009-0001-9132-5884Claudia Ferreira da Rosa Sobreira3https://orcid.org/0000-0002-7420-1644Ana Cláudia Mattiello-Sverzut4https://orcid.org/0000-0002-4181-0718Department of Health Sciences, Ribeirão Preto Medical School, University of São Paulo, BrazilDepartment of Mathematic, Technological University of Parana, BrazilDepartment of Health Sciences, Ribeirão Preto Medical School, University of São Paulo, BrazilDepartment of Health Sciences, Ribeirão Preto Medical School, University of São Paulo, BrazilDepartment of Health Sciences, Ribeirão Preto Medical School, University of São Paulo, BrazilBACKGROUND: Palliative care (PC) is indicated for Duchenne muscular dystrophy (DMD), however, access to this approach is difficult. PURPOSE: To verify whether patients with Duchenne muscular dystrophy (DMD) received the PC approach and evaluate the perceptions of health professionals about PC. METHODS: General information about the patient, interventions used to treat them, and PC approach were collected from the medical records. Health professionals completed a questionnaire designed to assess their knowledge about PC concepts. Data were analyzed descriptively. RESULTS: Twenty-five cases were analyzed. Patients received the multidisciplinary approach (84%) and 12% PC approach. Among the 58 professionals interviewed, 50% were unaware of PC assessment instruments, and 34.5% answered “no” or “I do not know” to the statement “Patients with DMD should receive PC since diagnosis”. CONCLUSIONS: The isolated implementation of strategies aimed at improving the quality of life for DMD patients does not constitute an effective inclusion of PC in clinical practice. To effectively incorporate the PC approach in clinical practice, healthcare professionals must be sufficiently trained.https://journals.viamedica.pl/palliative_medicine_in_practice/article/view/100494pediatric palliative careDuchenne muscular dystrophydeathend-of-life care |
| spellingShingle | Mariana Angélica de Souza Leon Elisangela Aparecida da Silva Lizzi Sara Cristina Pantoni Viana Claudia Ferreira da Rosa Sobreira Ana Cláudia Mattiello-Sverzut Do patients with Duchenne muscular dystrophy receive the palliative care approach? Palliative Medicine in Practice pediatric palliative care Duchenne muscular dystrophy death end-of-life care |
| title | Do patients with Duchenne muscular dystrophy receive the palliative care approach? |
| title_full | Do patients with Duchenne muscular dystrophy receive the palliative care approach? |
| title_fullStr | Do patients with Duchenne muscular dystrophy receive the palliative care approach? |
| title_full_unstemmed | Do patients with Duchenne muscular dystrophy receive the palliative care approach? |
| title_short | Do patients with Duchenne muscular dystrophy receive the palliative care approach? |
| title_sort | do patients with duchenne muscular dystrophy receive the palliative care approach |
| topic | pediatric palliative care Duchenne muscular dystrophy death end-of-life care |
| url | https://journals.viamedica.pl/palliative_medicine_in_practice/article/view/100494 |
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