A French observational study of botulinum toxin use in the management of children with cerebral palsy: BOTULOSCOPE

Qualitative development of the ‘Questionnaire on Pain caused by Spasticity (QPS),’ a pediatric patient‐reported outcome for spasticity‐related pain in cerebral palsy

“…The main findings of the literature review can be summarized as followed: (1) Pain in children with CP is an under-recognized and emerging topic in this population due to the significant influences on QoL [3, 7–9]; (2) SRP is one of multiple pain sources and needs to be distinguished from others such as hip dislocation, dystonia, surgeries, or contractures [6, 10]; (3) several general, acute pain assessments, and QoL questionnaires with pain items are available, but none specific for SRP in children and adolescents with CP and following actual guidelines [15, 16, 25–27]; (4) pain severity, frequency, and location in dependence on different activity situations are important [8, 10, 16]; and (5) a modular approach for an assessment is necessary to differentiate between upper and lower limb SRP and to account for different ages or cognitive abilities of the patients [1, 8]. This supports the development of a parent/caregiver module to capture observed signs of SRP in children who were either too young or too impaired to communicate.…”

“…The review of the available literature highlighted that SRP can be continuous or recurrent and varies in the type of trigger, intensity, frequency, or duration according to different activity situations [8]. CE interviews ensured that the QPS allows for complete evaluation of SRP by assessing pain triggered by different key activity situations.…”

“…In pediatric patients with spasticity, assessments and therapeutic interventions commonly focus on motor symptoms, but spasticity-related pain (SRP) is often underreported and consequently undertreated [3–7]. SRP can be continuous or recurrent; pain incidence and severity may be affected by movements and different activity situations throughout the day, for example, at rest, when walking, when playing, or during physical therapy [4, 8–10]. …”

“…Even when intramuscular injections of botulinum toxin are currently recommended for pediatric patients with CP [8, 13, 14], most clinical studies conducted in children/adolescents have been small and outcome measures have not been consistent or specifically developed for children with CP.…”

Comorbid Conditions in Individuals with Intellectual Disabilities

“…The use of antispastic drugs has shown beneficial effects in pain relief in people with CP (Chaleat-Valayer et al 2011;Intiso et al 2014). Orthopedic surgery can produce a decrease in pain associated with musculoskeletal deformities (Hasler 2013;Vles et al 2013).…”