RESUMEN
Congenital or acquired hand differences, including unilateral below-elbow deficiencies, present complex challenges in pediatric rehabilitation. Surgical management and prosthetic provision represent a big challenge to find a good balance for guaranteeing optimal hand function. There is no specific assessment tool for measuring these aspects in the Italian context. The present study investigates the psychometric properties of the ABILHAND-Kids in children with congenital unilateral below-elbow deficiencies and acquired amputation of the upper limb. We measure internal consistency using Cronbach coefficient alpha and the intraclass correlation coefficient (ICC) for measuring test-retest reliability. Differences in hand function in both children with acquired or congenital diseases were also investigated. Participants to the study were 107 (49 F and 58 M) children, with a mean (SD) age of 8.88 (4.25). For test retest reliability, conducted on a sub-sample of 58 children, the ICC was 0.92, while for internal consistency, the Cronbach coefficient alpha was 0.90. We did not find statistically significant differences in scoring (p = 0.33) in the use (mean 29.25 SD 6.58) or non-use of a prosthetic device (mean 30.74 SD 7.43), while statistically significant differences were found in hand function (p < 0.01) for children who had a congenital impairment (mean 31.87 SD 6.49) and children who had an acquired amputation (mean 27.77 SD 6.60). In conclusion, the ABILHAND-Kids showed good internal consistency and reliability and can capture differences in hand function in children with both congenital and acquired hand disorders.
RESUMEN
OBJECTIVES: Functional surgery (FS) is often used to correct congenital or acquired deformities in neurological patients. Along with functional results, short- and medium-term patient satisfaction should always be considered a key goal of surgery and rehabilitation. The aim of this study is to assess the short to medium-term satisfaction of patients who underwent FS and its correlation with perceived improvements. METHODS: Invitation to an anonymous online survey was sent via e-mail to all neurological adult patients or caregivers of children who underwent lower or upper limb FS over the 2018-2020 period. The survey investigated patients' satisfaction with the surgery and the variation in pain, ADLs, level of independence, body image, self-esteem, social interaction skills, participation in social events, leisure activities and sports, and use of orthoses or walking aids. Descriptive data analysis was performed. Correlations were assessed using Kendall's tau. RESULTS: 122 out of 324 adults and 53 out of 163 children's caregivers filled out the questionnaire, with a response rate approaching 40%. Eighty-three percent of adult respondents and 87% of the children's caregivers were satisfied or very satisfied in the short and medium terms and reported their expectations had been met. Satisfaction was significantly correlated (p < 0.01) with improvements in functional abilities, social participation, self-esteem, and pain reduction. Half of the adults and 40% of children stopped using their orthoses or replaced them with lighter ones. Dissatisfaction and worsened conditions were reported by <10% of the respondents. CONCLUSION: According to patients and caregivers, FS was satisfactory in the short and medium terms, following improvements in all the ICF domains for most patients.
In this study, we studied the satisfaction of patients with neurological diseases and their caregivers about two years after having undergone surgery to correct lower and/or upper limb deformities. We mailed a specifically designed survey to adult patients and caregivers of children who had surgery at our hospital. The questionnaire asked about how satisfied they were with the surgery and if they felt any improvements in different domains: meeting previous expectations, pain level, daily activities, being autonomous, body image, self-esteem, social interaction, participation in social events, leisure activities, and the use of orthoses or walking aids. About 40% of the patients we contacted filled out the questionnaire. Most of them said they were happy with the results obtained and felt their pre-surgical expectations had been met. Satisfaction was associated with improvements in functional abilities, social participation, self-esteem, and lessening of pain. Many patients also stopped using orthoses or switched to lighter ones. Only a few people said they were not happy or felt worse after the surgery. These findings highlight the positive impact of surgery on patient well-being and motor abilities.