Congenital Upper Limb Differences
Conditions
Keywords
Adaptive sports, Rock climbing, Congenital Upper Limb Differences, Improved psychosocial health
Brief summary
The goal of this clinical trial is to assess changes in functional and psychosocial outcomes following a 12-week adaptive rock-climbing program for children with congenital upper limb differences. The main questions it aims to answer are * Assess functional outcomes following a 12-week adaptive rock-climbing program. * Assess psychosocial outcomes following a 12-week adaptive rock climbing program. * Assess barriers to participation in adaptive sports. Participants will complete 12-week adaptive rock climbing program.
Interventions
BEHAVIORALAdaptive Rock Climbing Program
Twelve week rock climbing program. The program will take place once per week over the course of twelve weeks.
Sponsors
Children's Hospital Los Angeles
Study design
Allocation
NA
Intervention model
SINGLE_GROUP
Primary purpose
SUPPORTIVE_CARE
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
6 Years to 16 Years
Healthy volunteers
No
Inclusion criteria
* Parents 18 years and older. * English or Spanish speaking. * Participants with unilateral or bilateral congenital upper extremity disorders of limb formation differences ages 6-16.
Exclusion criteria
* Any patients younger than 6 years or older than 16 years, patients not fluent in English or Spanish, or patients with parents younger than 18 years.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Change from Baseline in KINDL Scores at 12 Weeks | Baseline and 12 weeks | The KINDL questionnaire will be completed by both child and parent. It includes 24 Likert-scaled items associated with emotional well-being and self-esteem. Questionnaires will be scored according to instructions provided by KINDL. |
| Change from Baseline in Muscle Testing at 12 Weeks. | Baseline and 12 weeks | Manual muscle testing will be measured by an occupational therapist. This will be measured from grade 0 to 5. |
| Change from Baseline in Range of Motion at 12 Weeks | Baseline and 12 weeks | An occupational therapist will measure the passive and active range of motion. These measurements will be conducted for the following: shoulder flexion, shoulder abduction, shoulder internal rotation, shoulder external rotation, elbow flexion/extension, forearm supination, forearm pronation, wrist extension, and wrist flexion. This will be measured in degrees. |
| Change from Baseline in PROMIS Life Satisfaction Scores at 12 Weeks. | Baseline and 12 weeks | To assess positive affect and well-being, children and parents will complete the PROMIS Pediatric Life Satisfactions v1.0 8-item Short Form. Patients will respond to statements such as I was satisfied with my life, on a scale of 1 Not at all to 5 Very much. |
| Change from Baseline in PROMIS Pediatric Global Health Scores at 12 Weeks | Baseline and 12 weeks | To gain a general view of participants' perception of their own physical, emotional, and relational health, children will also be asked to complete the PROMIS Pediatric Global Health v1.0 7-item Short Form. Participants will respond to 7 statements on a scale of 5 Excellent to 1 Poor. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Assess Barriers to Participation in Adaptive Sports | At 12 weeks (post-intervention) | Identify common transportation barriers through a demographic survey with transportation questions. |
Countries
United States
Contacts
Primary ContactAbigail Padilla
Backup ContactAbigail Padilla
Outcome results
None listed