Is my child missing out by not wearing an upper limb prosthesis?

An upper limb prosthesis can benefit children born with a shortened upper limb. However, a prosthesis may not be of benefit or accepted by every child. How do we decide which child is most likely to benefit from one? And what are the factors that influence prosthetic use and acceptance? There is no simple answer, but rather a multitude of factors which contribute to this decision making process.

The most influential factors include:

• Level of limb shortening
• The child’s goals or needs
• Prosthesis type – fit and function
• Mindset of the child and their family towards limb shortening and prosthesis

Some families report their child is more independent and able without a prosthesis. Younger children, particularly with a congenital limb shortening, have little sense of “loss”, so they develop their own compensatory strategies to perform tasks, such as using other body parts (e.g. head, legs and trunk) and adaptive methods or devices. Children with a below elbow shortening, often fall into this category. However a child with shortening above the elbow or involving both upper limbs, will find more challenges to developing independence in all tasks. These children potentially have more to gain with a prosthesis. But there are other factors to consider.

Ultimately the need for a prosthesis is driven by the child and their family’s personal needs and desires. These needs may be to prevent or solve a developmental problem, to address a specific task and improve their functional capacity, or improve appearance. These needs vary for every child, and these needs change throughout a child’s life. Therefore if a child does not need or wear a prosthesis now, it does not mean they won’t in the future.

Much of the scientific literature on prosthetic rejection is based on adult studies. In children who do receive an upper limb prosthesis, the rejection rate is up to 35-45%. A study done in the Netherlands (2013) asked 42 children aged 8-12 years and 13-16 years with a congenital below elbow deficiency the reasons why they did or did not use a prosthesis. A prosthesis was chosen and worn primarily for improved appearance, commonly in places where the child was meeting people for the first time. This was particularly important during transitional periods such as puberty. Once they felt comfortable in an environment, the prosthesis was disregarded. Interestingly in late adolescence, non-wearers had negative feelings about wearing a prosthesis, as they thought it highlighted their upper limb difference.

Functionality was also important. Most children regarded the prosthesis as a helpful accessory for managing school tasks such as cutting, grasping, holding and lifting. Task-specific use was noticed in early and late adolescence for cycling and driving more safely, and for leisure purposes such as volleyball and hockey. Most other times, these children managed without their prostheses.

The main reasons reported for not wearing a prosthesis were that the children felt they were faster and more functional without one. They also complained about the weight of the prosthesis, the lack of sensory feedback, as well as issues such as stump irritations, sweating or bad odour.

Technical limitations were not considered by users to be reason enough not to wear a prosthesis, but rather a cause for improvement. Prosthetic design needs to balance demands for comfort, function and appearance with durability and affordability. Including a child in the choice of their prosthesis will enhance acceptance. Accurate and realistic expectations on prosthetic use, through education, may also help prevent rejection. A range of sockets and terminal devices are available through the state Limb Provider or through the National Disability Insurance Scheme (NDIS), from which a prosthetist can create a custom-made prosthetic.

So, is your child missing out by not wearing an upper limb prosthesis? First, consider these questions:

First, consider these questions:

1. Does your child find an activity challenging in everyday life, due to their limb difference, and would they like to improve?
2. Is there limb difference affecting participation at school or sport or family recreation or independence?
3. Is you child worried about how their limb looks?

If so, then obtaining prosthetics may be an option, as is trying adaptive devices, task adaptations and compensatory strategies. Remember, most things are possible with a little bit of imagination, persistence, practice and a good team behind you.

Dr Sasaka Bandaranayake, Paediatrician, QPRS Limb Difference Multidisciplinary Team, Lady Cilento Children’s Hospital (Brisbane)

References:

Biddiss, E and Chau, T (2007) The roles of predisposing characteristics, established need, and enabling resources on upper extremity prosthesis use and abandonment. Disability and Rehabilitation: Assistive Technology 2(2):71-84.

Biddiss, E and Chau, T (2008) Mulitvariate prediction of upper limb prosthesis acceptance or rejection. Disability and Rehabilitation: Assistive Technology 3(4): 181-192.

Cordella, F, Ciancio, A L, Sachhetti, R, Davalli, A, Cutti, A G, Guglielmelli, E and Zollo, L (2016) Literature Review on Needs of Upper Limb Prosthesis Users. Frontiers in Neuroscience 10 (article 209).

Murray, C (Ed.) (2010) Amputation, Prosthesis Use, and Phantom Limb Pain. Springer.

Vasluian, E, de Jong, I, Janssen, W, Poelma, M, van Wijk, I, ReindersMesselink, H, van der Sluis, C (2013) Opinions of Youngsters with Congenital Below-Elbow Deficiency, and Those of Their Parents and Professionals Concerning Prosthetic Use and Rehabilitation Treatment. PLOS ONE 8(6) e67101.