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

Abstract

Purpose To develop a patient-reported outcome measure for spasticity-related pain in children/adolescents (age 2–17 years) with cerebral palsy (CP), the ‘Questionnaire on Pain caused by Spasticity (QPS).’MethodsUsing a semi-structured interview guide, concept elicitation interviews on spasticity-related pain in upper and lower limbs were conducted in 21 children and caregiver pairs. Data were used to modify initial QPS modules and develop six draft modules, which were subsequently refined and finalized in four consecutive cognitive interview waves (12 children and caregiver pairs).ResultsTo accommodate the broad range in the children’s communication skills, QPS child/adolescent modules were developed in both interviewer-administered and self-administered formats. With the additional parent modules, three QPS modules were developed for each of the upper and lower limb applications. Information gained from the parent/caregiver modules complements the child/adolescent assessment. Parents report observed signs and frequency of pain in the same situations used to capture the child/adolescent reports of pain severity (e.g., rest, usual daily activities, active mobilization, and physically difficult activities). Participating children/adolescents and parents/caregivers reported that the final QPS instruments were comprehensive, relevant to the child’s spasticity-related experience, and easy to understand and complete.ConclusionsThe QPS is a novel instrument for the assessment of spasticity-related pain in children/adolescents with CP that was developed with direct patient input. Its modules allow the use of this instrument in children/adolescents with varied levels of impairment and communication skills.

Ability of PROMIS Pediatric Measures to Detect Change in Children With Cerebral Palsy Undergoing Musculoskeletal Surgery

“…The PROMIS® scale may have difficulty detecting the impact of pain on function if activities within the scale have little relevance to youth with CP 30 or if items that evaluate pain directly associated with CP are lacking. 31,32 …”

The Relationship between the Spasticity-Related Pain and the Quality of Life about the Cerebral Palsy in China

“…The situations are described in different questions at rest, normal day activities, physical exercise and for an individual defined very hard thing to do for the children/adolescents. It is first asked for each situation whether pain occurred (Yes/No) and then how pain severity was experienced on the 6-point Wong-Baker FACES® scale by the children or adolescents or how pain frequency was observed by the caregivers by using a 5point response scale (0 = never-4 = always) [20] (Table 2).…”

Comorbid Conditions in Individuals with Intellectual Disabilities

“…The most frequent causes of pain are accidents (especially in children with greater motor disability), gastrointestinal pain, infections, headaches, and musculoskeletal disorders Parkinson et al 2013;Penner et al 2013;Ramstad et al 2011). Pain is associated with an increase in children's dependence (Tervo et al 2006), as well as greater interference in daily activities such as sleeping, physical education programs, or school activity (Engel et al 2002;Geister et al 2013;Ramstad et al 2011;Tervo et al 2006).…”

“…Painful etiologies, such as spasticity or musculoskeletal problems, can turn daily life activities like standing, walking, or physical activity into sources of pain (Geister et al 2013;Krigger 2006). In this sense, the study of Riquelme et al (2011) revealed that people with CP are subject to a greater number of painful health procedures than healthy people.…”