1. Making the decision about upper limb surgery Dr Jennifer Dunn PhD, MPhil(Rehab), Dip Phty

2. Introduction Pioneered by Moberg in early 1970’s Commenced in NZ in 1982 and since this time over 260 people who tetraplegia have had surgery

3. Reported benefits of upper limb surgery Restoration of elbow extension (mean strength went from MRC 0 – MRC 3.3 after reconstruction) Hamou et al (2009) Increased pinch strength (mean post- operative strength 2kg) Hamou et al (2009) Improvement in activities of daily living

4. From Wangdell & Friden (2011)

5. Patients with tetraplegia experience grip reconstruction as a useful intervention, an enhanced independence, related to their improved hand control. The increased hand control impacted not only physical aspects but also practical and psychological aspects. Improved self belief and confidence improved self-efficacy. It also influenced social and community participation and the interference the environment had on the person. Wangdell, et al (2013)

7. Uptake of upper limb surgery Variable uptake of upper limb surgery around the world Reported uptake in the USA less than 10% (Curtin et al, 2005) Uptake in NZ 65% of the people assessed for surgery (Dunn et al, 2010)

8. Decision making process

9. No thanks Let me have it ! Possibly Decide that upper limb surgery is not an option for them. Actively pursue the option of upper limb surgery. View upper limb surgery favourably, but is not a priority at this stage.

10. Let me have it! Want to get on with the rest of their life Improve independence Return to previous activities Did not reconsider decision to have surgery once it was made

11. No thanks May get more recovery Cure for SCI I’m okay as I am

12. Possibly Maybe later Often decided to have surgery then reconsidered Not willing to take time out of life for surgery/rehab Decision influenced by a number of factors

13. Issues influencing the decision Hope for further recovery/cure for SCI – Particularly in the “no thanks” group – Temporal component to this issue so that as hopes for continued recovery faded with time, often hope for the cure continued – Contrasting with “let me have it” group Physical environment/social support – The need for increased care/support during period while in plaster casts more of an issue for women, and those who were married/in a relationship – Home environment need to be adapted and stable

14. Issues influencing the decision Life roles – A big issue for women with tetraplegia as they were less willing to temporarily relinquish their life roles Life goals – Many in the “let me have it” group viewed upper limb surgery as a way of improving on rehabilitation and attaining previous life roles/goals – Those in the “possibly” group felt that the time required for surgery/rehab was considered too large a sacrifice to their immediate goals and priorities.

15. Making the decision SURGERY NO SURGERY Liminality An ambiguous state that is neither one thing nor another, a condition that is betwixt and between two states

16. Making the decision Liminal state not a steady state Many people appeared to be on the threshold of having upper limb surgery and may have just required a stimulus such as re-offer for surgery “ No-one approached me again to see if I wanted (surgery)..... I think if I had been encouraged by the right person, I probably would have had it done.” CW

17. Allows for changing life goals and circumstances Encourages the person with tetraplegia to re- examine their decision Re-offers for surgery Changes in thoughts on hope and the cure for SCI

18. Clinical implications Decision making is a process in time but the moment of making the decision is elusive therefore multiple offers of surgery at different timeframes in an individual’s life are required. Flexibility of timing for surgery to lessen impact of upper limb surgery on an individual’s goals and priorities.

19. “I like to keep an open mind about everything and in the future I might want to change my mind...so its always a possibility, yeah I haven't, I’m not sort of cold on the issue” JB “not saying never!” CW

21. Thank you

22. References Curtin, C. M., Gater, D. R., & Chung, K. C. (2005). Upper extremity reconstruction in the tetraplegic population, a national epidemiologic study. The Journal of Hand Surgery, 30A, 94-99. Dunn, J. A., Hay-Smith, E. J. C., Whitehead, L. C., Keeling, S., & Rothwell, A. G. (2010). Upper limb reconstructive surgery uptake for persons with tetraplegia in New Zealand: a retrospective case review 2001-5. Spinal Cord, 48, 832-837. doi: 1362.4393/10 Dunn, J., Hay-Smith, E., Whitehead, L., & Keeling, S. (2012). Issues influencing the decision to have upper limb surgery for people with tetraplegia. Spinal Cord, 50(11), 844-847. Dunn, J. A., Hay-Smith, E. J. C., Whitehead, L. C., & Keeling, S. (2012). Liminality and decision making for upper limb surgery in tetraplegia: a grounded theory. Disability and Rehabilitation(00), 1-9. Hamou, C., Shah, N. R., DiPonio, L., & Curtin, C. M. (2009). Pinch and elbow extension restoration in people with tetraplegia: a systematic review of the literature. The Journal of Hand Surgery, 34A, 692-699. Wangdell, J., & Friden, J. (2010). Satisfaction and performance in patient selected goals after grip reconstruction in tetraplegia. Journal of Hand Surgery (European). doi: 10.1177/1753193410373184 Wangdell, J., Carlsson, G., & Fridén, J. (2013). Enhanced independence: experiences after regaining grip function in people with tetraplegia. Disability & Rehabilitation(0), 1-7.