Introduction

While perhaps some variation is inevitable, restorative rehabilitation following upper limb reconstructive surgery for the tetraplegic person would focus on improving arm–hand function resulting in a reduction in disablement and subsequent dependence, by increased independence with activities of daily living (ADL) as well as societal inclusion, integration and participation. In practice it appears to be the combination of key pinch and hook grips and the synergic actions of the innervated muscles, transposed tendons and reconstructed thumb position that provides the functional advantage.^{1, 2, 3, 4} The functional gains include a variety of previously unachievable fine arm–hand activities (Figure 1).

Figure 1.

Postoperative hook and key pinch grip functional activities

Full figure and legend (80K)

Van Tuijl et al,¹ have provided a comprehensive overview of the arm–hand functional tests currently used and suggest that selection of a tool is at first determined by the outcome value of interest. In addition, various measures of handicap, social integration, employment, life satisfaction and quality of life (QoL) instruments are available and are increasingly included to broaden the representation of persons' interaction with their own environment^{4, 5, 6, 7, 8} which address the domains of function influenced by the aforementioned societal inclusion, integration and participation.

Interest in health outcomes is not new; clinical researchers have been measuring and valuing them for some time.^{9, 10, 11, 12, 13, 14} However, the demand has increased in recent years and 'outcome measurement' has become rather a catch phrase in rehabilitation. Wade¹⁰ has succinctly described it as simply 'the measurement of the consequences for the individual person'. Importantly, outcome measurement establishes a point of reference; therefore, the interpretation of such measurement requires a benchmark. Johnston et al,¹³ suggest that medical rehabilitation outcome measures test the effectiveness of interventions based on theories. Without some sort of framework or theoretical basis interpretation of outcomes, regardless of distinct variables, measurement is inadequate particularly if limited to the consideration of ADL without exploration of individual roles, expectations and perception of increased opportunities.

In part to address this very issue, the World Health Organisation (WHO) published a model in 1980 that was designed to represent the 'consequences of disease'. This was originally entitled the International Classification of Impairment, Disability, and Handicap (ICIDH).¹⁵ Over time there was substantial debate regarding the best way to define or classify functioning and disability. This original model was further developed with draft versions, the ICIDH-2, being circulated internationally for comment and discussion.¹² The most recently published version of this, the International Classification of Functioning, Disability, and Health (ICF),¹⁶ was endorsed by the World Health Assembly in May 2001. While it is beyond the scope of this paper to comprehensively narrate progressions made by the WHO in formulating the current conceptual framework the ICF (Figure 2), this clinical commentary discusses how the final versions of the ICIDH-2,¹² culminating in the ICF,¹⁶ provided the basis for interpretation of an individual's overall function.

Figure 2.

Interactions between components of the ICF (WHO, 2001)

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Clinical context: forearm tendon transfer surgery

The benefits of reconstructive surgery of the upper limb specifically for tetraplegia have become well established following the pioneering surgery of Moberg,¹⁷ Freehafer,¹⁸ Zancolli¹⁹ and Lamb²⁰ and the results of these interventions have previously been described.²¹ However, none of the versions of the WHO framework have been used to interpret the different levels of functioning or to consider the clinical usefulness of the measures used specifically for a group of persons who are greater than 10 years post-surgery. Consideration of the ICIDH-2¹² in relation to QoL (Figure 3) provided the opportunity for consideration of the results of the study described in this commentary, across three different levels of functioning. The urgent need for a consensus on outcome measurement to be used in spinal injury rehabilitation was subsequently highlighted by the work of the SCI Consensus Group.¹⁴ Further to this, the use of an internationally standardised language representing disability, functioning and consequences of health conditions have been endorsed at the 7th International Tetraplegia and Hand Surgery conference in Bologna, Italy in May 2001 but few present were sufficiently familiar with the WHO classifications for agreement to be reached.

Figure 3.

Proposed model of quality of life based on ICIDH-2 (WHO, 1999)

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The New Zealand 10-year re-review

The measured attributable effect of bilateral forearm tendon transfer surgery performed at the Spinal Unit, Burwood Hospital (referred to as Burwood Spinal Unit), Christchurch, New Zealand between 1982 and 1989 was the principle objective of the 10-year re-review reported by Rothwell et al,²² and referred to throughout this paper. What was not previously anticipated were the changes in the level of participation, sense of self-satisfaction and the meeting of expectations, and in particular positive labour force participation, which would be demonstrated within this cohort.

Mohammed et al,²¹ first reviewed these persons in 1991 as part of a larger review of upper-limb surgical procedures. Relevant to this discussion is that in 2001 three additional sets of data were included. Firstly, key pinch and hook grip strength was measured using a digital pinch and hook grip digital analyser (MIE Medical Research Ltd, Leeds, England). Second, participants were asked to complete the Quadriplegia Index of Function (QIF)²³ to complement the Lamb and Chan questionnaire used in 1991.²⁴ This was considered necessary to determine the current level of functional independence rather than relying solely on either long-term memory or perceptions of changes due to surgery. Finally, the additional comments section of the Lamb and Chan questionnaire, with the inclusion of the Burwood Appendix (Appendix 1) was structured to allow the opportunity for a response to specific questions relating to the participation dimension described by the ICIDH-2.

Interpretation of results based on ICF

While not attempting to reproduce the results in full, fundamentally the 2001 study demonstrated predominantly favourable long-term functional outcomes particularly in terms of participation at a minimum of 12 years and up to 18 years following surgery. While it is acknowledged that employment is only part of an individual's participation within society it has been described by Noreau and Fougeyrollas⁷ as an important role of the self-actualisation of many people. LaGrow⁸ has previously emphasised that interests and what individuals find enjoyable appear to remain the same following SCI, suggesting that desirable work options will remain similar to pre-SCI ideas and impact on QoL.

Considerable employment versatility was demonstrated by a large number of participants and several had retrained in an attempt to find gainful employment. The percentage of fully employed individuals across the entire sample population is higher than expected with 50% fully employed. Further, the percentage of fully unemployed, at 8.3%, was lower than that was expected. The four retirees were previously fully employed post-operatively and all but one had retired on reaching the retirement age. Therefore 91.6% of participants are either employed or were previously employed (since upper-limb surgery), employed in a voluntary capacity, or enrolled in tertiary education. Responses included:

The main objective for having the surgery was to increase my degree of independence...and to improve my employment position...the employment objective was successful.
In terms of professional work I have found the surgery to be of great benefit. I completed my degree having previously found it very frustrating to hold books, articles and paper. Now I can do all these with confidence and ease.

Consideration of levels of satisfaction and the meeting of expectations have been described specifically to persons with long standing SCI.⁹ The results of the Burwood Appendix showed that the perceived enhancement of life opportunities within this cohort had increased between 1991 and 2001. All but two individuals considered their vocational opportunities had significantly improved as a direct consequence of the improved independent hand function. It is acknowledged that satisfaction and the meeting of expectations are two different outcomes, however, it is of interest that both of these levels measured in 1991 were maintained, and in some case increased in 2001. In addition, self-esteem, confidence and 'quality of life' were referred to and easily incorporated by the ICIDH-2. Responses included:

The surgery has given me independence where it counts and self-esteem......I travel for work and I am frequently out for meals, etc. with people I don't know: I handle my own meals cutting, etc which eliminates embarrassment for other people......It is not just the big changes like employment that the operations have brought about that are greatly appreciated. But also the same things such as watering the indoor plants, changing music CD's and cassettes with ease, doing away with splints, not having to compete with gravity and making breakfast for my children.
...I think the surgery has helped my level of confidence. For example when I go out in public I can be sure of managing a cup of coffee and eating with a fork. These things help with self esteem. It also means I can do more for myself and other people..... Simple (household) tasks enable me to feel more useful.....
Having the surgery increased my ability and confidence to do things for myself. Equally importantly, it gave me more ability to do things for other people. This goes from the social niceties of food and drink for visitors to the more intensely personal aspects of being in a loving relationship.

Limitations

The outcome measures used in 1991 were limited in part to what was available at the time and by the psychometric properties of the measures themselves. In addition to validity and reliability issues the Lamb & Chan's reliance on memory of preoperative function was of concern in 2001. However, it could be argued that the hand function was limited to such a grave extent preoperatively that this self-reporting was less likely to be inaccurate.

A second limitation was the absence of definitive preoperative data. While retrospective review of patient records was undertaken in 2001, neither the Lamb & Chan activity measure nor the Burwood Appendix had been used preoperatively. This is as much a-sign-of-the-times in that the use of outcome measures in the early 1980s was not common practice. It would have been useful to have absolute clarification of employment status prior to upper limb reconstructive surgery. However, in 2001 all but one participant reported they had not returned to work following the onset of tetraplegia prior to upper-limb reconstructive surgery.

Discussion

While there are limitations to the 10-year re-review reported by Rothwell et al,²² it is an example of the clinical usefulness of the WHO's conceptual framework of disability and function. The research team wanted to improve the interpretation of the results to consider the longer term consequences of increased hand function of a group of tetraplegic persons at least 12 years and up to 18 years following forearm tendon transfer surgery. No single measure provided sufficient evidence of responsiveness to accurately depict either changes in hand function over time or changes in functional independence over time. The measures required more comprehensive interpretation because the individual results were potentially misleading and the clinical picture could have been construed as inconsistent. Further, the dimension of participation could have been overlooked if the measurement was limited to grip strength and ADL.

While seemingly simplistic, use of an internationally accepted framework allowed a diverse group of clinicians to recognize the strengths and weaknesses of assessment and measurement. This process facilitated meaningful discussion between hand surgeons and therapists. The ICIDH-2 has previously been described as capable of offering an opportunity for building a consensus on the terms to describe disablement^{24, 25} and in this context it was considered clinically useful. The value of further exploration concerning the life impacts of SCI and upper-limb surgery was endorsed by this exercise. The broader participation dimension is currently under investigation by this research group using qualitative research methods and the ICF²⁶ as the theoretical construct.

Conclusion

While the ICF is not an assessment or measurement tool itself, it is a useful conceptual model that can be applied to, among other things, outcome measurement and research. Consideration of impacts relating to the dimension of participation described by the WHO, and relationships to psycho-social factors can be encompassed in the assessment and measurement of SCI and reconstructive upper-limb surgery.

There is currently neither a consensus on how to interpret measurement of the functional consequences for the person with tetraplegia following reconstructive upper-limb surgery, nor agreement on the use of a suitable theoretical construct to underpin interpretation of measured outcomes. With the 8th International Conference on Tetraplegia scheduled for February 2004 it seems appropriate to revisit this fundamental issue.

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Acknowledgements

The study was generously funded by the New Zealand Spinal Trust.