Treatment with botulinum toxin in children with cerebral palsy: a qualitative study of parents' experiences

Lorin, K.; Forsberg, Anette

doi:10.1111/cch.12350

Cited by 11 publications

(15 citation statements)

References 29 publications

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“…Our findings relating to BoNT‐A being a stressful process for parents and children are consistent with those of Lorin and Forsberg (Lorin & Forsberg, ). Both studies also describe the complexity of the decision‐making process for parents surrounding BoNT‐A of weighing up the benefits and drawbacks of the procedure, particularly in the context of adverse events and uncertainty about long‐term effects.…”

Section: Discussionsupporting

confidence: 92%

“…Understanding families' experiences of services is a key step in improving family‐centred care (Ben‐Tovim, Dougherty, O'connell, & Mcgrath, ). However, only one study to date provides insight into the family perception of BoNT‐A injections (Lorin & Forsberg, ). Alongside the functional benefits, parents reported that BoNT‐A injections were stressful procedures for the child, with some families questioning whether the benefits of the treatment outweighed the risks and emotional distress (Lorin & Forsberg, ).…”

Section: Introductionmentioning

confidence: 99%

“…However, only one study to date provides insight into the family perception of BoNT‐A injections (Lorin & Forsberg, ). Alongside the functional benefits, parents reported that BoNT‐A injections were stressful procedures for the child, with some families questioning whether the benefits of the treatment outweighed the risks and emotional distress (Lorin & Forsberg, ). However, many aspects of the experience of BoNT‐A injections were not included as part of the family interviews in that study.…”

Section: Introductionmentioning

confidence: 99%

“…injections were stressful procedures for the child, with some families questioning whether the benefits of the treatment outweighed the risks and emotional distress (Lorin & Forsberg, 2016). However, many aspects of the experience of BoNT-A injections were not included as part of the family interviews in that study.…”

mentioning

confidence: 99%

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Using family and staff experiences of a botulinum toxin‐A service to improve service quality

Burton

Bau

Lewis

et al. 2017

Child

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Areas of importance identified by families relating to BoNT-A treatment included acknowledgement of individual needs, care coordination, empowerment of families and patients, consistency in service delivery, and the distressing nature of appointment and decision-making. Comparison of the data from the staff patient journey mapping and family interviews suggested that staff have a good but incomplete understanding of the factors important to families, highlighting the need for consumer engagement in establishing family-centred care. The themes identified can guide the provision of family-centred BoNT-A injection clinics.

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Section: Discussionsupporting

confidence: 92%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

mentioning

confidence: 99%

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Using family and staff experiences of a botulinum toxin‐A service to improve service quality

Burton

Bau

Lewis

et al. 2017

Child

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“…BoNTA has been used to manage hypertonia in children with CP since 1993 [8]. BoNTA has a high safety profile [9][10][11] and the short-term outcomes of BoNTA are well documented [12][13][14][15][16][17][18][19][20]. Molenaers et al, concluded that when injected according to an integrated approach and started at a young age, BoNTA has the potential to improve overall function of children with CP [21].…”

mentioning

confidence: 99%

A prospective study investigating gross motor function of children with cerebral palsy and GMFCS level II after long-term Botulinum toxin type A use

et al. 2020

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Background: The aim of this study is to contribute to the knowledge base on the long-term outcomes of evidence-based medical interventions used to improve gross motor function in children and adolescents with Cerebral Palsy. Method: Prospective cohort study of children with Cerebral Palsy in the birth years 2000-2009 attending a tertiary level service for children with Cerebral Palsy who's first recorded Gross Motor Function Classification System level was II. Results: A total of 40 children were eligible for the study, of whom 28 (72.7%) enrolled. The Botulinum toxin A treatment for this cohort, (median and interquartile ranges) were: total number of lower limb Botulinum toxin A injections 11 (6.7, 5.5); total dose of Botulinum Toxin A per lower limb treatment 6.95 u/kg (4.5, 11); and dose of Botulinum Toxin u/kg/muscle 2.95 (2.2, 4). For all 28 subjects there was a median of 15 (8.5 to 22) Gross Motor Function Classification System level recordings: six of the 28 children (21.4%) improved from level II to level I, the remaining 22 children remained stable at level II (78.6%). In this highly treated population, the average 66 item Gross Motor Function Measure score for the 22 children in level II was 72.55, which is consistent with the mean of 68.5 reported in the original Ontario cohort. Conclusion: This cohort study has confirmed that children with Cerebral Palsy, Gross Motor Function level II treated at a young age with repeated doses of Botulinum Toxin A within an integrated comprehensive service, maintain or improve their functional motor level at a later age. Background Cerebral Palsy (CP), the most common motor disorder of childhood, was described by Rosenbaum et al. in 2007 as a 'group of permanent disorders of the development of movement and posture that are attributed to nonprogressive disturbances that occurred in the developing fetal or infant brain' [1, 2]. The Australian Cerebral Palsy Register has recorded the prevalence of CP as 2.1 per 1000 live births [3]. Perth Children's Hospital (PCH), Western Australia (WA) (population 2.4 million) is the state centre for the management of motor disorders in children and adolescents with CP. In 2003 following new funding from the West Australian government an evidence-based clinical program for children with CP in WA was established and is known as the Cerebral Palsy Mobility Service (CPMS). As part of the funding a database, the Paediatric Rehabilitation Information System (PRIS), was established, with retrospective data entry for children with CP to 1995 [4]. In a recent retrospective audit, we confirmed that the CPMS manages the state

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Improved Sitting Balance in Children with Cerebral Palsy: Body Functions to Activity and Participation

Akyuz¹,

Dursun

Gokbel

et al. 2022

Journal of Pediatric Neurology

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The aim of this study is to evaluate the changes in activity and participation domains of International Classification of Functioning (ICF), Disability and Health, in children with cerebral palsy (CP) who received integrated botulinum toxin A (BoNT-A) treatment with intensive rehabilitation with a treatment goal of improved sitting balance. In this prospective observational study, 29 patients with CP (mean age: 6.7 ± 3.8 years) and the Gross Motor Function Classification System (GMFCS) levels of IV and V were included. The primary outcome measures were the mean changes from baseline to posttreatment weeks 10 to 12 of the Child and Adolescent Scale of Participation (CASP) and Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD). The modified Ashworth scale (MAS) and Tardieu scale (TS) results at 6 to 8 weeks of posttreatment were the secondary outcome measures. Statistically significant improvements in home and community participation of CASP (p < 0.001 and 0.001), CPCHILD (p < 0.01), MAS (p < 0.001), and all parameters of TS (p < 0.05) were recorded after treatment. The result of this prospective, observational study showed that the functional improvements in sitting balance by the integrated BoNT-A treatment provides positive effects on activity and participation levels of the patient and quality of life of patients and their families.

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Treatment with botulinum toxin in children with cerebral palsy: a qualitative study of parents' experiences

Abstract: Treatment with BoNT-A was described as facilitating motor development and activity. The children's and the parents' negative experiences of the injection procedure should be addressed.

Cited by 11 publications

References 29 publications

Using family and staff experiences of a botulinum toxin‐A service to improve service quality

Using family and staff experiences of a botulinum toxin‐A service to improve service quality

A prospective study investigating gross motor function of children with cerebral palsy and GMFCS level II after long-term Botulinum toxin type A use

Improved Sitting Balance in Children with Cerebral Palsy: Body Functions to Activity and Participation

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