Mette van Kruijsbergen1, Carin D Schröder1,2, Marjolijn Ketelaar1, W Ludo van der Pol3, Inge Cuppen3, Annette van der Geest1,4, Fay-Lynn Asselman3, Maarten J Fischer1, Johanna M A Visser-Meily1,4, Marijke C Kars5. 1. Center of Excellence in Rehabilitation Medicine, UMC Utrecht Brain Center and De Hoogstraat Rehabilitation, University Medical Center Utrecht, Utrecht University, Utrecht, the Netherlands. 2. Ecare4you, Amersfoort, the Netherlands. 3. UMC Utrecht Brain Center, Department of Neurology, University Medical Center Utrecht, Utrecht University, Utrecht, the Netherlands. 4. Department of Rehabilitation, Physical Therapy Science & Sports, University Medical Center Utrecht, Utrecht University, Utrecht, the Netherlands. 5. Center of Expertise in Palliative Care, Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht University, Utrecht, the Netherlands.
Abstract
AIM: To gain insight into parents' perspectives about their decision-making process concerning nusinersen treatment for their child, including perceived needs and concerns, and to explore factors that influence this process. METHOD: This was an exploratory qualitative interview study among parents of children with spinal muscular atrophy types 1 to 3. Data were analysed using inductive thematic analysis. RESULTS: Nineteen parents of 16 children representing 13 families participated. A wide variety of perspectives was reported ranging from a biomedical approach, which focused on battling the disease, to a holistic approach, which aimed for a good quality of life for their child. The most important factors that helped parents to decide were honest and neutral communication with their physician and access to available information. INTERPRETATION: It is important physicians understand that there are different perspectives influencing the decision-making process. Physicians should create an environment that allows parents to accept or reject treatment by communicating honestly and openly with them and by discussing both options extensively. Clear information about pros and cons, recent developments in research, and the experiences of other parents should be made available to enable parents to make an informed decision. What this paper adds Parents perceived different needs and concerns about nusinersen treatment, which emphasized individual differences. Parents' perspectives varied from battling the disease to preserving quality of life. Life expectancy, stopping deterioration, and improving quality of life were the perceived benefits of nusinersen treatment. Open communication about the pros and cons of treatment with clinicians facilitated decision-making. Clear and honest information facilitated the alignment of values and goals.
AIM: To gain insight into parents' perspectives about their decision-making process concerning nusinersen treatment for their child, including perceived needs and concerns, and to explore factors that influence this process. METHOD: This was an exploratory qualitative interview study among parents of children with spinal muscular atrophy types 1 to 3. Data were analysed using inductive thematic analysis. RESULTS: Nineteen parents of 16 children representing 13 families participated. A wide variety of perspectives was reported ranging from a biomedical approach, which focused on battling the disease, to a holistic approach, which aimed for a good quality of life for their child. The most important factors that helped parents to decide were honest and neutral communication with their physician and access to available information. INTERPRETATION: It is important physicians understand that there are different perspectives influencing the decision-making process. Physicians should create an environment that allows parents to accept or reject treatment by communicating honestly and openly with them and by discussing both options extensively. Clear information about pros and cons, recent developments in research, and the experiences of other parents should be made available to enable parents to make an informed decision. What this paper adds Parents perceived different needs and concerns about nusinersen treatment, which emphasized individual differences. Parents' perspectives varied from battling the disease to preserving quality of life. Life expectancy, stopping deterioration, and improving quality of life were the perceived benefits of nusinersen treatment. Open communication about the pros and cons of treatment with clinicians facilitated decision-making. Clear and honest information facilitated the alignment of values and goals.
Authors: Gustavo Saposnik; Paola Díaz-Abós; Victoria Sánchez-Menéndez; Carmen Álvarez; María Terzaghi; Jorge Maurino; María Brañas-Pampillón; Ignacio Málaga Journal: PLoS One Date: 2022-02-15 Impact factor: 3.240