Views of Multiple Sclerosis Patients About Key Elements for a Decision Aid: A Qualitative Study
| Primer Autor |
Robles-Sanchez, Miguel-Angel
|
| Co-autores |
Moharra, Montse
Bosch-Farre, Cristina
Hernandez-Leal, Maria Jose
Montalban, Xavier
Sastre-Garriga, Jaume
Ramio-Torrenta, Lluis
Bertran-Noguer, Carme
|
| Título |
Views of Multiple Sclerosis Patients About Key Elements for a Decision Aid: A Qualitative Study
|
| Editorial |
LIPPINCOTT WILLIAMS & WILKINS
|
| Revista |
JOURNAL OF NEUROSCIENCE NURSING
|
| Lenguaje |
en
|
| Resumen |
BACKGROUND: Patients with multiple sclerosis (MS) may experience decisional conflict during treatment choice. Shared decision making (SDM), whereby patients and health professionals, primarily nurses, collaborate in making decisions, reduces this decisional conflict. It requires understanding large amounts of information and may be complex, especially when decisions affect patients' autonomy and quality and prolongation of life. Patient decision aids are tools in facilitating SDM. This study aimed to identify the key elements from the perspective of patients with relapsing-remitting MS to create a patient decision aid in the Spanish sociocultural context. METHODS: This is a qualitative study using focus groups led by a clinical nurse specialist. Semistructured interviews included healthcare needs and demands, the SDM process, and general characteristics of a peer support program. After the transcription of interview recordings, data were analyzed by thematic analysis and a constructivist naturalistic approach. RESULTS: Patients with MS (27) from Spain participated in 4 focus groups of 90 to 120 minutes each. Three overarching themes were identified: information access to sufficient high-quality data, knowledge of available treatment options, including efficacy, adverse effects, frequency, administration route, and the impact on daily life, decision-making role, engaged versus nonengaged patients. The former require support in facilitating their active involvement in decisions, whereas the latter prefer more passive health models. CONCLUSION: The needs identified by patients with relapsing-remitting MS regarding treatment choice in the Spanish setting align with those reported by other studies. The identified themes provide valuable information to design and develop a virtual patient decision aid jointly by clinical MS nurses and patients according to the International Patient Decision Aid Standards Collaboration criteria. This aid will help improve understanding between nurses and patients during SDM and facilitate the process.
|
| Fecha Publicación |
2023
|
| Tipo de Recurso |
artículo original
|
| doi |
10.1097/JNN.0000000000000721
|
| Formato Recurso |
PDF
|
| Palabras Claves |
decision aids
health literacy
multiple sclerosis
qualitative study
shared decision making
|
| Ubicación del archivo | |
| Categoría OCDE |
Neurociencias y Neurología
Enfermería
|
| Materias |
ayudas para la toma de decisiones
literatura saludable
esclerosis múltiple
Estudio cualitativo
toma de decisiones compartida
|
| Página de inicio (Recomendado-único) |
164.0
|
| Página final (Recomendado-único) |
170
|
| Identificador del recurso (Mandatado-único) |
artículo original
|
| Versión del recurso (Recomendado-único) |
versión publicada
|
| License |
CC BY NC-ND
|
| Condición de la licencia (Recomendado-repetible) |
CC BY NC-ND
|
| Derechos de acceso |
acceso abierto
|
| Access Rights |
acceso abierto
|
| Id de Web of Science |
WOS:001060014300004
|
| ISSN |
0888-0395
|
| Tipo de ruta |
verde# hibrido
|
| Categoría WOS |
Neurociencias y Neurología
Enfermería
|
cienciaabierta.ufro.cl
ciencia.abierta@ufrontera.cl