The functional assessment and rehabilitation programme of the UK hand and upper limb transplant service

Abstract

Introduction

Hand and upper limb transplants are becoming internationally recognised as an effective treatment to improve function and quality of life in carefully selected patients. A comprehensive functional assessment and rehabilitation programme are an essential component of the multi-disciplinary assessment and treatment approach. Although there is an increasing body of published data on the surgical techniques and outcomes following hand transplant, little exists in the literature to guide the hand therapist.

Method

The pre-transplant functional assessments and rehabilitation programme provided for patients undergoing hand transplantation in the UK are described and critically analysed. The UK programme is based on that provided in Lyon, France, but adapted to suit the resources and structure of the UK National Health Service.

Results

Twelve patients have received a functional assessment as part of the multi-disciplinary hand transplant assessment process, with the loss of autonomy a key reason for patients seeking hand transplant. Six of these patients have received hand transplants, with patients more than one year post-transplant having achieved good and fair outcomes according to the Hand Transplantation Score System.

Conclusions

Although hand and upper limb transplant surgery is innovative, the therapy provided is based on the fundamental principles of good communication, accurate assessment and delivery of a bespoke rehabilitation programme; values which are common to all areas of hand therapy practice. A future study reporting the long-term outcomes of patients following hand transplant in the UK is needed to allow the effectiveness of the programme to be evaluated.

Keywords

Hand transplant functional assessment rehabilitation hand therapy

Introduction

The world’s first modern-era hand transplant was performed in Lyon, France in 1998. Hand transplant programmes have since been developed in other centres throughout the world and more than 120 hand transplants have been performed.¹ Published international data demonstrating improvement in function and quality of life have resulted in this procedure, once regarded as experimental, now becoming accepted as a suitable treatment for carefully selected patients.^2,3

The first UK hand transplant was carried out in Leeds in 2012. This was a unilateral mid forearm transplant immediately following elective amputation. In April 2016, NHS England commissioned hand transplants to be available through the NHS in England, and four more bilateral and one unilateral hand transplants have now been performed in Leeds. A comprehensive multi-disciplinary assessment is an important component of appropriate patient selection. This paper describes the pre-transplant functional assessment and rehabilitation programme for patients undergoing hand transplantation in the UK and describes the challenges faced in treating this unique patient group.

The programme

Pre-operative assessment

There is currently no consensus on which functional assessments and outcome measures to use for hand transplant patients, despite recognition of the need for standardisation. ^4–6 The Disability of the Arm Shoulder and Hand (DASH) questionnaire is the most frequently used functional outcome measure in hand transplant studies.⁷ However, the Hand Transplantation Score System (HTSS) is the only outcome measure specifically designed to assess outcomes in this patient group even though it cannot be applied preoperatively.³

Guided by the work completed by Bernardon et al.⁴ and Ninkovic et al.,⁵ the World Health Organisation (WHO) International Classification of Function, Health and Disability (ICF)⁸ model was used in our service as a framework to select the assessment tools and outcome measures used to measure pre and post-transplant function. This involves the assessment of body structure and function, activity, and participation and the interaction of personal and environmental factors, ensuring a thorough and comprehensive assessment. The series of outcome measures chosen to assess UK patients are outlined in Table 1.

Table 1.

Outcome measures used according to ICF domain.

ICF domain	Assessment/outcome measure
Body structure and function	Range of movement (active and passive)
	Manual muscle testing (MRC scale)
	Grip and pinch strength
	Sensibility (SWMF, 2PD, Stereognosis, Moberg pickup test)
	Manual dexterity (Box and Blocks assessment)
	Sollerman Hand Function Test (functional grip patterns)
	HTSS
	DASH
Activity and participation	COPM
	Non standardised observation of functional tasks (video recorded)
	HTSS

MRC: medical research council; SWMF: Semmes-Weinstein monofilaments testing; 2PD: two-point discrimination test; HTSS: hand transplant score system; DASH: disabilities of the arm, shoulder and hand; COPM: Canadian occupational performance measure.

Pre-operative rehabilitation education

We believe informing and educating patients and their families about the extent and rigours of the rehabilitation regimen required to achieve best function, is key to future compliance. Rehabilitation is intensive and prolonged, with significant improvements expected for at least three years following transplant.⁴ It is therefore important to stress not only the expected functional outcome, but also the time commitment required for this to be achieved and its impact on the patient and their family. An initial decline in function is frequently experienced post-transplant and the requirement for physical assistance for basic care needs during this period is discussed. This can be a challenge and cause anxiety for some patients, with concerns raised about revisiting the feelings of dependency experienced immediately following their original injury or illness. These discussions are managed alongside regular reviews with the Hand Transplant Clinical Psychologist, who assesses the patients’ cognitive ability, motivation, coping and adjustment capabilities.

Prehabilitation

It is recognised that cortical reorganisation occurs following amputation and subsequent transplantation, and that cortical stimulation can occur from proximal muscle contraction following amputation.^9,10 Therefore, in preparation for transplant, patients are provided with a daily exercise and motor imagery programme. This involves repeated contractions of proximal muscles; action observation and motor imagery, e.g. watching family members perform functional tasks and then imagining themselves doing those tasks.¹¹ A strengthening programme is also incorporated, where appropriate, using resistance bands and free weights. This strengthens the available muscle groups of the shoulder, shoulder girdle and elbow, preparing and conditioning the body to receive the weight of the transplanted limb.

Post-operative rehabilitation

General principles

The rehabilitation provided to UK patients is based on the program provided in Lyon, France.^4,10–12 Drawn from the principles of replant rehabilitation, the program involves the therapy treatment modalities of splinting, range of movement (ROM) exercises, scar and oedema management, activities of daily living, strengthening and sensory-motor re-education.¹³ Each programme is highly individualised to the patient with continuous assessment, intervention and evaluation. The therapy plan should be flexible and adjust to the individual circumstances of the patient. Factors such as level of amputation, comorbidities, variable nerve regeneration rates, episodes of rejection, further surgery and general health and well-being of the patient need to be considered. A summary of the rehabilitation provided to hand transplant patients is shown in Table 2.

Table 2.

Summary of hand transplant rehabilitation.

Stage of rehabilitation	Frequency and duration of therapy	Aim of therapy	Techniques applied
Early (0–6 weeks)	Inpatient: 2–4 h dailyOutpatient: 2 h, 2–3 times per week	Protection of hand transplantMaintenance of soft tissue length and balanceDischarge home	Patient educationSplintingOedema managementProtective active/passive movementSensory re-educationMobility, transfer and activities of daily living assessment with appropriate care package provision.
Intermediate (6–12 weeks)	2 h, 2–3 times per week	Monitor motor and sensory recoveryIncrease active ROM and strengthAchieve full passive ROMReturn to light function	Active and passive exercisesFunctional and exercise splintsLight functional rehabilitationStrengthening exercises from 8 weeksScar and oedema managementSensory re-education
Late (12 weeks +)	As per intermediate stage reducing in frequency and duration according to patient recovery	Monitor motor and sensory recoveryImprove strength and enduranceImprove fine motor controlMaximise functional independenceAchieve pre-operative COPM goals	Continued active and passive exercises, functional and exercise splints, scar and oedema management, modified and discontinued as per patient need.Functional rehabilitationSensory re-education

ROM: range of movement; COPM: Canadian occupational performance measure.

Level of transplantation

The level of transplantation varies and has an impact on the rate of recovery and the therapy priorities. Transplants proximal to the elbow require strengthening of the shoulder girdle and shoulder musculature while supporting the weight of the flail limb with slings and orthotic devices. Once the patient and family members have been taught a passive exercise regimen to maintain joint range and soft tissue length, the frequency of therapy input is reduced until nerve reinnervation has commenced.

Early phase: 0–6 weeks post-transplant

The main aim of treatment at this stage is to educate the patient on protection and safe positioning of the insensate limb. A thermoplastic volar resting splint is fabricated in an intrinsic plus position to protect bone fixation and maintain soft tissue balance and length during the tissue healing phase. The wrist is placed in 20°extension, metacarpophalangeal (MCP) joints 60°flexed, interphalangeal (IP) joints extended and thumb in palmar abduction. This is worn all the time for six weeks but is removed for exercises, wound and skin care and to monitor vascularity and for signs of rejection. Oedema is monitored by circumferential measurements and managed through positioning, massage, mobilisation and compression.

A protective active/passive movement regimen is commenced at three to five days post-transplant. This prevents joint stiffness and tendon adhesion formation. This is individualised to each patient dependent on transplant level and surgical techniques. Sensory-motor re-education is encouraged at this stage by continuing to use their prehabilitation motor imagery programme.

Patients’ general mobility and transfers are reviewed as soon as the patient is well enough and preparations for discharge home, including organising care packages are commenced. Bilateral transplant patients may be unable to use their hands for functional tasks for several months and may require physical assistance for basic care needs such as taking their medication, toileting, feeding, washing and dressing. Any adaptations that can facilitate independence in parts of these tasks are therefore important for patients’ well-being. This may include adapting clothing or adding attachments to splints to allow feeding or typing on a computer for example.

Therapy input occurs daily for 2–4 h as an inpatient. This occurs in two sessions, one in the morning and one in the afternoon. This provides the flexibility and time required for nursing care, medical review, psychology input and vital rest periods for the patient. Patients are usually discharged two to three weeks post-transplant. Patients living in the local area are seen as outpatients three times per week. Patients who live out of area have their care shared between the transplant centre and local hand unit.

Intermediate rehabilitation: 6–12 weeks post-transplant

Motor and sensory recovery is closely monitored and splinting and exercises modified accordingly. The wear of the volar resting splint is reduced to night time and protection in busy places. Daytime half hood dorsal blocking splints are fabricated to prevent clawing and position the thumb into opposition, allowing light functional activities. Motor relearning principles are incorporated into treatment and active/passive and tendon gliding exercises are progressed to aim for full range of passive motion by 12 weeks. Light bilateral activities are introduced to encourage grip, release and placement of objects. Generalised strengthening exercises are incorporated from eight weeks into treatment sessions and at home with use of therapeutic putty and resistance bands and free weights. Scars and oedema are treated with massage and if appropriate, compression with pressure garments.

Patients’ goals identified in the Canadian Occupational Performance Measure (COPM)¹⁴ are reviewed and short-term treatment goals established. These are individualised for each patient, but usually based around personal care activities such as feeding, toileting, personal grooming and dressing. It is important to remind patients to protect their insensate limbs at this stage, as we have found that as patients regain independence in self-care tasks, often this is the time when they are more prone to injure their hands.

Late stage rehabilitation: 12 weeks and after

Therapy outpatient sessions are gradually reduced to twice per week dependent on patient need; however, patients continue with their daily home exercise programme. Treatment continues to be modified according to motor and sensory recovery with the focus on improving strength and endurance and functional independence. When patients are able to establish touch, further sensory re-education is commenced. This includes localisation (static and moving), texture and shape discrimination, immersion and stereognosis. Sensory recovery is monitored throughout the rehabilitation programme using Semmes-Weinstein monofilaments and static and moving two-point discrimination. Patients are encouraged to build sensory re-education into everyday activities and incorporate other sensory stimuli such as vision, sound, smell and taste. Longer term treatment goals identified in the COPM are the focus of rehabilitation. These have included goals such as drink and meal preparation, writing, household maintenance, gardening and driving.

Reassessment

Outcomes are recorded throughout the patients’ recovery and treatment modified accordingly; however, formal re-assessment occurs annually. The HTSS scores are inputted into the International Registry of Hand and Composite Tissue Transplantation, which allows outcome data to be compared internationally.¹⁵ The HTSS encompasses appearance, sensibility, movement, psychosocial and social acceptance, daily living activities and work status, and patient satisfaction and general well-being, and enables hand transplant outcomes to be categorised from poor to excellent.¹⁶

Outcomes

To date, 12 patients have received a functional assessment as part of the multi-disciplinary team (MDT) hand transplant assessment process. Figure 1 shows the range and frequency of occupational performance areas that prospective hand transplant patients have identified through the COPM that restrict their functional performance. Although the issues identified are not surprising, they are all potentially solved by either adaptations or prosthetic solutions. From our experience, patients seeking hand transplant find the restrictions these solutions place on them are unsatisfactory. Many feel a sense of dependence and restriction in their choices and therefore ability to fully participate in life, e.g. choosing food that is easy to eat or clothes that are easy to wear, rather than a free choice based on preference alone.

Figure 1.

Range and frequency of functional performance areas identified as a concern by patients assessed in the hand transplant programme.

Of the 12 patients functionally assessed, six have received hand transplants. The HTSS results of the first three patients are presented in Table 3. The remaining three patients are currently under one year post-transplant and have therefore not yet been re-assessed.

Table 3.

Hand transplantation score system (HTSS) results.

	Year 1	Latest follow-up
Patient 1	Good	Good
Unilateral mid forearm		(6 years post-transplant)
Patient 2	Good	Good
Bilateral metacarpal base, retained thumbs		(2 years post-transplant)
Patient 3	Fair	Fair
Bilateral mid forearm with donor flexor/ extensor muscle bellies		(2 years post-transplant)

Discussion

The assessment and treatment of patients undergoing hand transplantation provide unique challenges for the hand therapist. Although more centres are publishing their outcomes and rehabilitation programmes, the variability of patients, surgery and outcome measures used make comparing studies and formalising rehabilitation guidelines difficult. There is currently no consensus between centres on which outcome measures to use to assess pre- and post-hand transplant function.

The outcome measures used in the UK are similar to those published from other centres.^4,5,13,17,18 However, the Sollerman Hand Function Test (SHFT), a standardised test of hand function based on the seven most frequently used hand grips¹⁹ was used as an alternative to the Carroll upper extremity function test²⁰ and its successor, the Action Research Arm Test.²¹ The SHFT was already routinely used in the department to assess hand function. The Box and Blocks assessment²² was used to measure hand dexterity and was chosen because of its use in measuring prosthetic function^23–25 and so allowed pre and post-transplant dexterity comparison.

To assess the activity domain, Bernardon et al.⁴ observed patients performing a series of 65 tasks selected to encompass all elements of upper limb function. These discrete tasks were completed twice, both with and without prostheses and assistive equipment, with the therapist rating performance on a 4-point scale. However, due to time pressures in the NHS and the comprehensive nature of pre-transplant assessments already undertaken, observing each patient perform 130 tasks was not feasible or a beneficial use of time and resources. By contrast, in the UK, programme patients are observed performing two functional activities. These are usually kitchen-based activities such as making a drink and a snack and may involve some of the discrete tasks observed by Bernardon et al.,⁴ but within the context of a functional activity. The patient is observed performing the two activities in their usual way which may include wearing prostheses or using adaptive equipment. The activities are video-recorded to provide an accurate observation of the patient’s performance pre- and post-transplant.

Originally, the Assessment of Motor and Process Skills (AMPS) was used.²⁶ We believe evaluating process skills, which traditionally would not be completed in an upper limb assessment, an important element of a comprehensive functional assessment due to the complex presentations and comorbidities frequently observed in patients seeking transplant. In addition, we have found a patient’s ability to problem solve a useful predictor of their ability to adapt post-transplant. However, central to the philosophy of the AMPS is that the patient chooses two activities to perform that are a concern in their daily life and are performed in a natural, task relevant environment. It was felt the constraints placed by the hospital environment and available resources restricted this core element and therefore the validity of the assessment. The motor and process skill items are still used to guide and score the quality of the patient’s performance in the observed tasks, but a computer score allowing norm-based comparison is not generated.

The benefits of videotaping functional assessments to provide an accurate record of the complexities of upper limb function are well documented.^27–30 This view is supported by Bernardon et al.⁴ who also video part of their assessment, although interestingly not the daily living tasks. We have found the video allows additional information to be recorded on the quality of the performance, for example the speed and effort required to complete tasks or any signs of fatigue or pain. The video assessment has proved a useful resource when discussing patients in the MDT clinic and also as a valuable educational tool, which we believe is crucial in the development of an innovative service.

The COPM was included to enhance the assessment of the ICF activity and participation domains. This reliable, valid and responsive assessment tool enables patients to identify and prioritise issues that restrict their performance in everyday tasks. It allows a change in performance and satisfaction level to be measured for specific tasks that are meaningful to the individual patient with a change score of 2 or more considered clinically significant.^14,31–33 However, the individualised nature of the problems identified means that the COPM cannot be used to compare scores against norm values.³³

The addition of the COPM complements the predefined functional tasks that are measured in the DASH and allows patient-specific therapy treatment goals to be established which are then used in the post-transplant rehabilitation programme. This view is supported by van de Ven-Stevens et al.³² who advocate the use of the COPM in patients with hand conditions. Ninkovic et al.⁵ recognised the importance of focusing on functional problems that are most significant to the individual patient when assessing progress and setting rehabilitation goals, ensuring motivation remains high and best outcomes are achieved post-transplant.

Although we based our rehabilitation programme on that of the Lyon programme, the resources available and structure of the UK healthcare service have necessitated changes to the intensity of the rehabilitation programme and reflects the interaction of environmental factors in the WHO ICF model. Our rehabilitation programme is less than that documented in previous studies^4,5,13 in both inpatient and in particular outpatient care, from 4 to 5 h daily for 12 months compared to 2 h two to three times per week provided in the UK. Bueno et al.¹³ described the expense of providing such an intensive programme and suggested the use of home exercise to reduce these costs. Our experience has demonstrated that rehabilitation to patients following hand transplant can be provided with a reduced number of face-to-face therapy treatment sessions, with a self-motivated patient adhering to a home exercise programme.

Implications for practice

Although the number of hand transplant patients in the UK is increasing, little literature exists to guide the hand therapist. The rehabilitation provided following transplant is based on the principles from replantation; however, there are several differences.

Firstly, hand transplant requires input from multiple specialities. This results in increasing and at times competing demands on patients’ time, especially in the acute post-operative phase. Effective MDT communication ensures the patient is seen by the correct clinician at the correct time, protecting the well-being of the patient and success of the hand transplant.

Secondly, the immunosuppressive medications can affect patients’ general well-being and stamina in therapy sessions. We have found this with several patients as did Bueno et al.¹³ Therapists should be aware of the signs of acute rejection, as they are often the first healthcare professional to observe these signs. Acute rejection and its treatment often require the intensity of the therapy to be modified as high levels of steroids are used. Therapists should also be aware that nerve regeneration is accelerated in patients who receive the immunosuppressant drug Tacrolimus and therefore reinnervation may occur earlier than anticipated.^34,35 We believe a highly responsive and flexible approach is therefore key in treating this patient group.

Thirdly, the value of the therapeutic relationship that develops between the therapist and patient cannot be underestimated. The rehabilitation required post-hand transplant is long and intense, with a significant amount of time spent together. Severance and Walsh¹⁷ describe the planning, adjustments and understanding required to ensure the development of this relationship. This view is shared by Bueno et al.¹³ who feel a strong relationship is one of the indicators for a successful transplant.

Recommendations for future research

The variety of assessments used and the lack of validity of these assessments for measuring outcomes in hand transplantation require further consideration and are acknowledged within the hand transplant community. ^4–5 Agreement on a battery of assessments that encompass all domains of the WHO ICF model would be beneficial. Traditionally in the field of hand surgery, the focus and development of outcome measures have centred on the body structure and function domain. However, from our experience, it is a loss of autonomy coupled with a sense of being incomplete that is important to patients seeking hand transplant. This view is shared by Bernardon et al.⁴ and highlights the complexities involved in measuring function and quality of life in this patient group. More emphasis on the activity and participation domains may enable a more meaningful outcome of hand transplantation.

The UK hand transplant service is a national service, with a hub and spoke model of service delivery. Further research exploring the perspectives of the patient, therapist at the transplant centre and local hand unit, would provide valuable insights into the clinical decision-making and challenges faced in treating this unique patient group.

The motor imagery and sensory re-education programmes used in the rehabilitation of hand transplant patients are based on standard hand therapy practice, but adapted to suit the individual needs of each patient. Further research on the content, frequency, duration and effectiveness of these programmes for hand transplant patients would be beneficial.

Conclusions

Providing the assessment and rehabilitation of the UK’s first hand transplant patients has been a challenging but immensely rewarding experience. The assessment and rehabilitation provided is based on guiding principles, but as each patient is unique and our experience increases, this has been developed and adapted over time. Although the surgery is innovative, the therapy provided is based on the fundamental principles of good communication, accurate assessment and delivery of a bespoke rehabilitation programme, values which are common to all areas of hand therapy practice. We have suggested the addition of the COPM assessment to enhance the activity and participation domains of the WHO ICF model and reported a rehabilitation programme with reduced face-to-face therapy treatment sessions, which may reduce the costs for hand transplant if adopted by other centres. Our HTSS scores for the first three patients receiving hand transplantation in the UK are promising. However, a future study reporting the detailed long term outcomes of patients is needed, to allow the effectiveness of the UK programme to be evaluated.

Footnotes

Acknowledgements

The authors would like to thank the UK Hand and Upper Limb Transplant multi-disciplinary team for their support and guidance in the development of the service.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship and/or publication of this article.

Ethical approval

No ethical approval was required for this article.

Guarantor

JB.

Contributorship

JB and ST wrote the first draft of the manuscript. SPK and DJW reviewed and edited the manuscript. All authors reviewed and approved the final version of the manuscript.

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