8.11 Lifelong monitoring

Best practice note—6

Outcome measures

There are numerous tools available to health professionals that are reliable and valid to measure changes in specific factors, progress towards the person’s goals and the influence of specific treatments. Measuring outcomes needs to be linked to the person’s goals.

There are also simple, standard, real-world outcome measures that can be used, such as frequency, task intensity and time measures (e.g. whether and how frequently the person is capable of independently completing a task per day or per week, the distance walked, or changes in the time taken to complete a routine task). The guidance is not a clinical guideline so does not recommend outcome measures for specific treatments or health professional disciplines.

The guidance recommends screening tools which are all patient reported outcome measures (PROMs) for regular monitoring (refer to Section 8.9 Regular screening) which should be used in conjunction with observation, interview and other standardised or real-world fit-for-purpose outcome measures consistent with the health professional’s area of expertise, experience and knowledge of their use.

As amputation is a lifelong health condition, the need for ongoing prosthetic review, treatment and therapy, and access to a multidisciplinary team is critical. Although the need for follow-up and support of any person with an amputation is lifelong, the frequency and range of supports will differ over time [54, 74]. The need for prosthesis replacement, repair, modification and adjustments will depend on environmental factors, user activity and physiological changes [75]. The need for support may also change, even if temporarily, with key life events such as the anniversary of the injury or amputation, changes to pain experience, ongoing or new connected health issues, changes to lifestyle (e.g. losing a job, becoming a parent, moving homes), changes in personal circumstances and supports (e.g. death of a carer who provided informal supports), experiencing other health conditions (e.g. diabetes), or further injury. Lifelong counselling and support should be available to the person and their carers as needed, in addition to that provided before and after the amputation [26].

Generally, the person has ongoing contact with the prosthetist for the rest of their life. It is important that contact with other members of the multidisciplinary team is triggered when it needs to be. A case manager, if one is involved, or the prosthetist is responsible for referring the person to other members of the multidisciplinary team if they experience issues requiring assessment, treatment or therapy (refer to Recommendation 22, Section 8.18). Some guidelines suggest that the person with a limb amputation needs an annual multidisciplinary assessment throughout their life [24]. This guidance recommends that the person should maintain regular contact with their GP, at least every 12 months.

Recommendations

16 The person should maintain regular contact with their GP, at a minimum every 12 months. Consensus

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