Limb lengthening in individuals with achondroplasia: Analysis of an international survey

Limb lengthening surgery is a contentious option for individuals with achondroplasia. This study aimed to assess real-world experiences, outcomes, and perspectives on limb lengthening in a multinational cohort of individuals with achondroplasia.

A cross-sectional, international online survey on limb lengthening experiences and perspectives was conducted in 11 languages across 16 countries from May until July 2024.

Out of 467 responders (229 self-responders, 238 parents/caregivers), 90 (19.3 %) reported undergoing limb lengthening (LL) surgery. The mean age at first surgery was 10.5 years (SD 4.5). On average, respondents underwent 3.7 (SD 2.9) procedures, resulting in 14.5 cm (SD10.4) added and final adult height of 137.1 cm in females and 142.1 cm in males. Significant improvements were described in activities such as car driving, bathing, brushing hair, and wiping after toileting for those who underwent both arm and leg lengthening (p ≤ 0.001). Among respondents, 23 % would recommend the procedure to others and 28 % would not recommend LL. Nearly half of respondents (49 %) was uncertain about recommending LL.

This is the largest international survey on LL in achondroplasia with results highlighting some of the differences in perspectives and choices of the individual with achondroplasia and their families, providing real-world evidence of the outcomes of this intervention. While significant functional improvements were reported, a reduced percentage of respondents recommended LL intervention. The findings underscore the existence of a triad when considering limb lengthening in achondroplasia as individual choices and life experiences, socio-cultural environment and access to clinical options.