Pain Prevalence, Distribution, Effect on Activities of Daily Life in Patients With Adolescent Cerebral Palsy
Condition: Cerebral Palsy
MeSH terms: Paralysis; Cerebral Palsy
Study type: Observational

Summary: 
      Pain is the most common secondary condition in patients with CP and the most important factor
      associated with reduced health-related quality of life. Pain in adolescents with CP is
      reported approximately 50-75%. Despite being a condition that can be seen with such a high
      prevalence, it is difficult for researchers and clinicians to capture this subjective
      perception in CP, as the individual may be a small child, may be cognitively impaired,
      visually impaired, or have communication difficulties. For these reasons, unrecognized pain
      can have negative effects on quality of life and participation in daily living activities,
      both as a result of limited mobility resulting from pain itself and fear-driven avoidance of
      specific activities. Self-report of pain is appropriate for individuals with CP without
      cognitive impairment. However, depending on the severity of communication impairment,
      self-report may be limited or even impossible to obtain in individuals with severe CP. In the
      case of individuals with CP, self-report supplemented with parent report, when possible, is
      the recommended strategy.

      The aims of this study: (i) to explore what is known about the prevalence, location,
      intensity and the effect of pain on daily lives of adolescents with CP; (ii) to demonstrate
      the relation between pain, clinical and sociodemographic characteristics; (iii) to compare
      self-reports of pain with mothers'reports of their child's pain.
    

Detailed description: 
      The investigators will record demographical data including age, gender, height (cm), weight
      (kg), body mass index (BMI), school type, type of family (core or combined family) of the
      children and socioeconomic status of the family, mothers' age and educational level. The
      subtypes of CP will be classified, using the Swedish classification, into spastic
      (tetraplegia, diplegia and hemiplegia), ataxic, dyskinetic and mixed. Severity of CP will be
      determined based on the Gross Motor Functional Classification System. It will be questioned
      in which situations the pain occurred in the previous week (at rest from spasms, at rest from
      splints, on feeding, on moving, on dressing, at night, on exercise, on other treatments, on
      botulinum toxin application) and record as yes/no. The pain questionnaire described by Doralp
      et al (14) will be used both for the self-evaluation of adolescents with CP' pain and for
      mothers to evaluate their children's pain. Participants will be asked to respond to the
      initial question "Over the past month, have you experienced physical pain?" (yes or no).
      Those responding "yes" will be asked "Please indicate how severe your pain was over the past
      month, on average," with response options from 1 (very little pain) to 10 (extremely
      painful). They will be asked to indicate "How much the pain gets in the way of your daily
      activities over the past month" from a low of 1 (does not get in the way at all) to 10
      (unable to carry out activities because of the pain). Finally, they will be asked to indicate
      the body regions in which they experienced pain.
    

Intervention name(s): Circumstances of pain; Pain Questionnaire; Gross Motor Functional Classification System; The subtypes of Cerebral palsy
Intervention type(s): Other; Other; Other; Other
Intervention description(s): It will be questioned in which situations the pain occurred in the previous week (at rest from spasms, at rest from splints, on feeding, on moving, on dressing, at night, on exercise, on other treatments, on botulinum toxin application) and record as yes/no.; Participants will be asked to respond to the initial question "Over the past month, have you experienced physical pain?" (yes or no). Those responding "yes" will be asked "Please indicate how severe your pain was over the past month, on average," with response options from 1 (very little pain) to 10 (extremely painful). They will be also asked to indicate "How much the pain gets in the way of your daily activities over the past month" from a low of 1 (does not get in the way at all) to 10 (unable to carry out activities because of the pain). Finally, they will be asked to indicate the body regions in which they experienced pain.; Severity of CP will be determined based on the Gross Motor Functional Classification System (GMFCS). GMFCS is a standardised measure that classifies gross motor functions in children with CP. Children in level I are very independent in motor functions while those in level V are the least independent; The subtypes of CP will be classified, using the Swedish classification, into spastic (tetraplegia, diplegia and hemiplegia), ataxic, dyskinetic and mixed
Observational model: Other
Time perspective: Cross-Sectional
Sampling method: Non-Probability Sample
Study population: 
        adolescent cerebraly palsy and their mothers
      
Keywords: cerebral palsy; adolescent; pain; parent report; self report