Functional Status ESTS (soft tissue sarcomas)
Medical research on functional status and postoperative pain after surgical treatment of children with a soft tissue sarcoma in an arm or leg.
Recruiting
Who can enter
Children with a soft tissue tumor in an arm or leg who have undergone surgery for this
Age: 8–18 years at the time of diagnosis
Goal
Goal
The goal of this study is to investigate limb function and persistent (nerve) pain after treatment of a soft tissue tumor in an arm or leg.
Background
Background
Children with a soft tissue tumor in an arm or leg are usually treated with surgery to remove the tumor. In most cases, the arm or leg can be preserved, but surgery may have lasting consequences. Sometimes nerves, muscles, or bones are damaged, which can result in persistent pain or reduced mobility. Nerve pain (neuropathic pain) is relatively common and can significantly impact daily life. However, little is known about how often these problems occur and which surgical techniques may help reduce these problems.
We believe that certain surgical techniques, such as nerve or muscle repair, may help to limit pain and functional loss. By investigating which children develop these problems and which approaches can help reduce them, future treatment can be improved and children and parents can be better informed about the possible consequences of surgery.
In this study, we therefore focus on children treated in the Netherlands for a soft tissue tumor in an arm or leg between 2000 and 2025. We collect medical records and ask patients from the age of 8 to complete a short questionnaire about neuropathic pain (DN4 questionnaire) and about limb function (PROMIS questionnaire). Completing the questionnaire takes about five minutes.
No new treatment is being tested and no additional hospital visits or examinations are required. Participation therefore has no effect on treatment and carries no risks. However, participation will help us gain more insight into how often children experience persistent pain or loss of function after surgery and which surgical techniques may contribute to better outcomes. This will help us provide better care and counseling for children with a soft tissue tumor and their parents in the future.
In order to participate in a study please refer to your/your child’s doctor.
Last reviewed
Last reviewed
January 8, 2026
Study details
- Study details
Official title
Functional status and persisting pain after extremity sarcoma surgery in children: a cross-sectional cohort studyCancer type
Soft tissue sarcoma’sMaximum number of participants
80 are expected to participate in the NetherlandsStart date
December 22, 2025Status
Open for participationLocal principal investigator
Prof. dr. M.A.J. van de SandeSponsor
Princess Máxima Center for pediatric oncologyApproval
This study has been reviewed and approved by the internal scientific committee (Clinical Research Committee) of the Princess Máxima Center. An accredited medical research ethics committee waived the need for official approval according to the Medical Research Involving Human Subjects Act (WMO), and is therefore not further involved in the review of the research. This is only done for studies with low risk or low patient burden. More information can be found at: CCMO.
The above information is intended as a brief summary only and may not reflect the most up-to-date information. For full details and the current status of a protocol, physicians can contact the Princess Máxima Center directly.