Venous malformations clinical outcomes

The Occupational Therapy team at Great Ormond Street Hospital (GOSH), in partnership with the Dermatology, Interventional Radiology and Plastic Surgery teams, helps to treat children and young people with venous malformations.

We offer assessment and provision of compression garments, which are clothes (such as gloves, sleeves, or leggings) used in the long-term management of this condition. They are usually worn during the day to help the return of blood to the heart, which can reduce swelling and pain and reduce the risk of clot formation. Compression garments can facilitate movement, enable function, and promote participation in daily activities. The appearance and comfort of the garments are very important to consider, so a bespoke service is provided with specialist measurement where required.

Venous malformations are abnormalities affecting blood vessels that occur during the development of a baby. Venous malformations are usually large veins that can look like soft, lumpy, blue marks on the skin. They are present at birth, although they may not be obvious until the child grows. They are assessed and treated by a team of specialists including paediatric dermatologists, interventional radiologists, plastic or vascular surgeons, physiotherapists, occupational therapists and psychologists.

The options for treatment depend on the size and location of the malformation and the blood vessels involved. Possible treatment options include medicine, sclerotherapy, laser therapy and surgical removal. Occupational therapists may provide compression garments to manage the common symptoms of pain, swelling and reduced activity levels.

In 2021, a patient-reported outcome measure (PROM) was used by the occupational therapists (OTs) to assess how compression garments help to manage patients’ symptoms and support their participation in daily activities. It also assessed parents’ satisfaction with the service provided by OTs.

During the data collection period from July to October 2021, the OT Service reviewed 27 patients already known to them for the provision of compression garments. Of these, 23 were invited to participate in a survey about the service. Four patients were not invited due to insufficient staff/time. Fifteen responses were received, which represents a 65% response rate. Of these, 47% (7/15) were female and 53% (8/15) were male. 73% (11/15) responses indicated that the leg was the affected part of the body and 27% (4/15) indicated the arm/hand was affected.

When asked about how compression garments help people to manage their symptoms, over 90% reported that their compression garments help to manage pain and swelling. Two thirds of this sample experience heaviness or fatigue associated with their venous malformation. Of these patients, 60% reported that their compression garments help with this.

Figure 1.1 Patient reported compression garment use to manage symptoms, 2021/22

When asked about how compression garments help people to participate in daily activities, 80% reported that their compression garments help with sports/PE and 67% reported they help to manage at school. Most patients did not experience difficulty with Rest/sleep, but for those who did, the majority found their compression garments helped. For patients who wear lower limb garments, 82% reported it helped them to participate in walking. For patients who wear upper limb garments, 100% reported it helped them participate in fine motor tasks (these are activities that use hand muscles for small movements such as writing or tying shoelaces).

Figure 1.2 Patient reported compression garment use to help participate in daily activities: Sports/PE, School and Rest/sleep, 2021/22

Figure 1.3 Patient reported compression garment use to help participate in daily activities: Walking and Fine motor, 2021/22

When asked about their overall level of satisfaction with the OT compression garment service at GOSH, 100% of patients who participated in the survey reported that they were very satisfied.

This information was published in September 2022, and will be updated every three years.