Abstract
Purpose
To examine the effect of limb lengthening on the quality of life of people who have disproportionate short stature (DSS).
Method
Thirteen previous patients, completed the SF-36, the Derriford Appearance Scale and participated in face to face semi structured interviews to establish the impact on their physical and social functioning, their present situation including employment, education, housing and leisure activities and their thoughts about whether they felt the treatment had been worthwhile. To increase understanding about the patient and family experience of limb lengthening, participants were asked about their memories of the procedure and the treatment period.
Results
Much was learned about key areas such as pain control, pin site cleaning and physiotherapy. The importance of the role of families in supporting the patient through the treatment was strongly emphasised and how this was sometimes at the expense of siblings.
Conclusions
Overall all participants were able to find some benefit to the procedure but they had mixed feelings about the outcome. There was evidence of benefit to some physical capabilities and confidence levels but there were areas where the situation was similar to those with DSS who had not had surgery e.g. bodily pain. It is acknowledged that this study has some methodological weaknesses which reduce the strength of the findings.
