Ulnar Hand Deformity, Ulnar Longitudinal Deficiency
Conditions
Keywords
Ulnar longitudinal deficit, Upper limb deficiency, Pediatric upper limb, Occupational therapy, ABILHAND-Kids, PROMIS
Brief summary
The management of patients with longitudinal ulnar deficiency is a clinical challenge due to the rarity of this condition and the wide variety of its manifestations. In particular, there is no consensus in the literature on the indications for surgery. The aim of this research is to improve understanding and management of this malformation by analyzing existing data from patient medical follow-up. No new clinical evaluations or occupational therapy assessments will be performed specifically for this study. The analysis will be based on previous medical and paramedical data (consultation reports, imaging, occupational therapy assessments, etc.) in order to better describe the functional evolution of patients and identify the decision-making criteria that guide surgical management. Parents will also receive standardized questionnaires (PROMIS and ABILHAND-Kids-CP) to gather their perceptions of their child's quality of life and independence. The results will be used to propose recommendations for a more consistent and multidisciplinary assessment of longitudinal ulnar deficit in the future.
Interventions
None listed
Sponsors
Hopitaux de Saint-Maurice
Study design
Observational model
COHORT
Time perspective
OTHER
Eligibility
Sex/Gender
ALL
Age
3 Years to 18 Years
Healthy volunteers
No
Inclusion criteria
* Patients with unilateral or bilateral ulnar hand deformity, whether operated on or not * Follow-up at CEREFAM and/or Trousseau Hospital * Complete medical records containing previous assessments
Exclusion criteria
* Non-French-speaking patient * No preoperative or postoperative assessment
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Upper limb function and health-related quality of life (PROMIS Upper Extremity and ABILHAND-Kids) | From baseline to study completion (up to 10 months) | Upper limb function and health-related quality of life will be assessed using validated parent-reported outcome measures: * The Pediatric Outcomes Measurement Information System (PROMIS) Upper Extremity Pediatric questionnaire. PROMIS scores are standardized T-scores with a mean of 50 and a standard deviation of 10 in the reference population. Scores typically range from approximately 0 to 100, with higher scores indicating better upper limb function. * The ABILHAND-Kids questionnaire (Assessment of Manual Ability for Children). ABILHAND-Kids scores are converted into a scaled measure ranging from 0 to 100, with higher scores indicating better manual ability. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Upper limb functional ability score | From baseline to study completion (up to 10 months) | Upper limb functional ability will be assessed using the ABILHAND-Kids questionnaire (Assessment of Manual Ability for Children). Scores are converted into a scaled measure ranging from 0 to 100, with higher scores indicating better manual ability. |
| Pediatric upper limb function | From baseline to study completion (up to 10 months) | Upper limb function will be assessed using the Pediatric Outcomes Measurement Information System (PROMIS) Upper Extremity Pediatric questionnaire. PROMIS scores are standardized T-scores with a mean of 50 and a standard deviation of 10 in the reference population. Scores typically range from approximately 0 to 100, with higher scores indicating better upper limb function. |
| Pediatric health-related quality of life | From baseline to study completion (up to 10 months) | Health-related quality of life will be assessed using the Pediatric Outcomes Measurement Information System (PROMIS) Pediatric Global Health questionnaire. PROMIS scores are standardized T-scores with a mean of 50 and a standard deviation of 10 in the reference population. Scores typically range from approximately 0 to 100, with higher scores indicating better health-related quality of life. |
Countries
France
Contacts
CONTACTAuriane AS SLAMA
Outcome results
None listed