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Lessons from Neuropage: assistive technology in neuropsychological rehabilitation 
Andrew Bateman 
Oliver Zangwill Centre for Neuropsychological Rehabilitation 
Cambridgeshire Community Services NHS Trust 
Ely, Cambridgeshire, UK 
September 2012 
Summary 
Compensating for prospective memory deficits using cognitive prosthetic devices appears to be an ecologically valid, sustainable, and cost-effective approach to Neuropsychological Rehabilitation. This chapter discusses the Neuropage Service that has run successfully for more than 10 years at the Oliver Zangwill Centre in Ely, Cambridgeshire, UK. Some of the insights and lessons we have learned over the years of delivering this service are outlined. 
In particular, it is interesting to see that in reviewing how the service has been used it is possible to notice a) the enormous diversity of reminder alerts and messages are needed by patients who have prospective memory difficulties b) the benefit of simple devices, c) we have seen adoption of this approach as an adjunct to rehabilitation to reinforce home practice, spaced retrieval, or alerting to increase activation-arousal. 
One of the often overlooked aspects concerns the adoption of assistive technology; there is a range of psychological interventions that may be needed to enable an individual to start using a device, for example to address insight, motivation or resistance. 
We have seen differences in response to treatment due to different pathologies. 
Whether the aids are a route to restoration or simply remain a compensatory strategy, achievement of meaningful functional activities remains our priority as a core component of Holistic Neuropsychological Rehabilitation. This is addressed through goal setting. 
BOX1 
Case example 
Alex is a man who lives alone, he has severely impaired prospective memory secondary to epilepsy. Poor prospective memory especially causing poor medication adherence, that was compounded by his failure to regularly collect his prescription from the pharmacy. His disabilities also included impaired mobility although he is mobile around his community using an electric scooter. Note however that this scooter needs recharging. A programme of message alerts was devised to be sent to his radiopager supplied by the pager service. He needed several messages to enable him to take his tablets: first “its time to go and find your tablets in the kitchen” (he keeps them by the kettle). “are you in the kitchen yet to find your tablets?” (his slow mobility means he is liable to forget why he is heading to the kitchen without this reminder); “now take your tablets – for Monday morning - from the dosette box” (daily medication is counted out into a daily dispenser). 
He needed a message to remind him to charge his electric scooter. This is especially important the evening before his appointment once a month when he needed reminding to go to the pharmacy to collect a new prescription “pharmacy tomorrow, time to charge your scooter”….”good morning ,it’s Thursday today”… “ pharmacy today after breakfast”. 
This routine of messages meant that Alex improved his medication compliance to near 100% accuracy, his seizure management improved, he maintained his community mobility and independence, both he and his General Practitioner were delighted. He soon established this
routine and after approximately six weeks, it was possible to start to reduce the frequency of messages. 
Background 
Compensating for prospective memory deficits is a logical use of assistive technology. This Chapter is a reflection on our use and provision of a cognitive prosthetic service known as Neuropage. The structure of the service is described briefly. 
The work represented in this chapter would not have been possible without the contributions of many people, and it arises from the context of The Oliver Zangwill Centre for Neuropsychological Rehabilitation. This is a Centre that was founded in 1996 by Professor Barbara Wilson OBE. Put simply, the Centre has four main functions. Primarily the Centre offers a Holistic Neuropsychological Rehabilitation programme for adults who live in the community. We have written in detail about the theory, therapy models and outcomes of work of the Centre (Wilson et al, 2009). The activities include comprehensive neuropsychological assessment of individuals and providing an intensive day rehabilitation programme that aims to help people overcome the cognitive, emotional and social consequences of acquired brain injury. Secondly, along side this work, the team are involved in a wide range of research and publication projects on neuropsychology. Thirdly, arising out of this, the specialist team are often involved in providing education events for carers and professionals. 
So it is from this context that fourthly, the Neuropage (www.neuropage.nhs.uk) service was opened as a small business element run from the Centre. This has been possible because of the neuropage research project and associated publications that have contributed to the neuropsychological rehabilitation evidence base. There is no doubt that the body of work this represents has been one of the major outputs and most cited outputs of Barbara Wilson and her research team from over the years. Ideally a clinical service should be offered that reflects the evidence available in any given field. The main research, completed more than a decade ago has been widely cited and re-analysed in editorials, systematic reviews and meta-analyses (eg Grafman, 2008; Gillespie, et al, 2012). The studies completed by Wilson and colleagues are recognised as high quality studies. The existence of the Service provides an example of implementation of research that has translated into a lasting service provision. 
Why provide a memory prompting service?: 
i) a clinical perspective 
It is axiomatic that clinical rehabilitation research should reflect the priorities of service users and their needs. It is well established that memory impairment is the most readily reported problem that follows brain injury. Figure 1 illustrates this by way of an analysis of responses to the European Brain Injury Questionnaire (EBIQ) by more than 200 patients who have attended The Oliver Zangwill Centre. The EBIQ is a 63 item questionnaire (see Bateman et al 2009) that lists 63 symptoms that follow brain injury and asks patients and carers to indicate whether the symptom has been a problem in the last month, with a simple 3 point Likert response (not at all, a little, a lot). This plot is called an item threshold map (Andrich, 2007), it depicts the relative probability of responses to each question expressed as a log- odds unit (‘logit’). It is quickly possible to see in the responses to the questionnaire, the relevance of assistive technology the neuropage work as patients report not only indicate memory as their main problem, but linked to this are the consequences of this, such as not getting things done on time, feeling unable to plan, and failing to participate in activities in our out of the home.
ii) a neuropsychological theory rationale. 
It is beyond the scope of this Chapter to review all of the theories of memory and the vast literature on memory rehabilitation. It is important to note also that the problems described here are those of problems with executive functioning. One neuropsychological theory that can help explain this pattern of patient’s responses is found in consideration of frontal lobe functioning. One author who has written interesting articles on this subject is Stuss in a series of articles (Stuss and Levine, 2002, Stuss 2011a and 2011b). Two of the four systems he describes, the “Executive Cognitive Functions” that appear to be the function of the dorsolateral prefrontal cortex and the “Activation Regulating Functions” (Anterior cingulate and superior medial cortex) are particularly relevant and typically disrupted by acquired brain injury. That is to say, functions such as working memory, inhibition, control and direction, planning, monitoring, activating, switching, inhibiting of behaviours (Stuss, 2011a,b) are all things that may self evidently benefit from cognitive prosthetic support. For this chapter it is sufficient also to mention that patients that report problems in in the other two main domains of executive functioning that Stuss describes, namely “Metacognitive” and “Emotional” functions, have also found their way into the reminder schedules that we have sent to patients. 
About the Neuropage service 
Professor Barbara Wilson introduced the NeuroPage service to the UK after meeting with a Californian Neuropsychologist and Engineer-father of a young man who had suffered a brain injury. The Neuropage software was originally written to support college attendance. 
A programme of research into effectiveness of the approach was initiated in a collaboration of the Medical Research Council Cognition and Brain Sciences Unit and the Oliver Zangwill Centre. At the conclusion of the study it was considered that there was sufficient evidence to support implementation of a nationally available service (www.neuropage.nhs.uk). 
Memory 
Others not understanding 
Having to do things slowly 
Not getting things done on time 
Being unable to plan 
Difficulty making decisions 
Feeling unable to get things done 
Everything is an effort 
Feeling hopeless about future 
Feeling sad 
Reacting too quickly 
Lack of interest/hobbies outside home 
Lack of interest/hobbies inside home 
Hiding your feelings from others 
Figure 1. Threshold map first 14 items of European Brain Injury Questionnaire, n=225 adults with ABI 
(LOGITS)
Box 2 
A short summary of some of the research evaluating neuropage 
Barbara A. Wilson, Jonathan J Evans, Hazel Emslie, Vlastimil Malinek, 1997 
Journal of Neurology, neurosurgery and Psychiatry; 63:113-115 
NeuroPage was evaluated with 15 Neurologically impaired subjects all of whom had significant everyday memory problems, using a ABA single case experimental design. 
All subjects benefited from NeuroPage and showed a significant improvement in the percentage of tasks achieved, not only during the treatment period but also during the post- treatment phase. 
Reducing everyday memory and planning problems by means of a paging system: a randomized control crossover study 
B.A. Wilson, HC Emnslie, K Quirk, J.J. Evans, 2001 
Journal of Neurology, Neurosurgery and Psychiatry; 70:477-482 
Evidence: 
The results presented are about the group of 143 participants. The study concluded that there is evidence that the paging system enabled most of the participants to carry out more everyday tasks than they were able to achieve without the pager. They also found that the successful use was not confined to people of a particular age, sex, diagnostic group, level of impairment, time since insult or from particular social circumstances. 
The people for whom the paging system seems particularly useful are those with some insight, sufficient vision to read the screen without too much effort, and a lifestyle in which it is helpful to carry out some tasks independently. 
A randomized control trial to evaluate a paging system for people 
with traumatic brain injury 
B A. Wilson, H. Emslie, K Quirk, J Evans, & P Watson, 2005 
Brain Injury, 19(11): 891–894 
Evidence: 
63 subjects with TBI (this paper provided a secondary analysis of the group was part of a larger group of 143 comprising several diagnostic groups); as with the main study, the group was randomly divided into 2 groups one was given the neuropage (Group A) while the other was allocated to a waiting list. After a 7 weeks of neuropage use, group A returned the neuropage which was then given to group B. Treatment target activities were agreed with participants such as taking medication or remember to prepare food. Performance achievement was assessed at baseline (before any group had de neuropage, after 7 weeks trial of group A with neuropage and after 7 weeks group B had the neuropage. There were significant differences at all 3 periods to conclude that this paging system significantly reduces the everyday memory and planning problems of people with TBI. NeuroPage showed on average, a 30%increase in attainment of individually specified goals (Wilson et al.,1997,2001) 
External cueing systems in the rehabilitation of executive impairments of action 
J. Evans, H Emslie , B. A. Wilson (2008) 
Journal of the international neuropsychological Society 4:399-408
Evidence: 
The use of the neuropage and a paper and pencil checklist in the rehabilitation of executive problems in a 50-year-old woman who had a stroke 7 years earlier (RP). An ABAB single- case experimental design was used to evaluate the impact of NeuroPage on the ability of RP to carry out the target actions identified without prompting. The NeuroPage had a dramatic effect on the probability of RP carrying out her intended actions at the appropriate time. It was hypothesized that the NeuroPage not only prompted RP to initiate action but the bleeping of the pager actually brought about an increase in attentional arousal, thus enabling the initiation of action to take place. The increased arousal also improved RP’s ability to sustain her attention over the time period required to carry out an action. 
Long-term compensatory treatment of organizational deficits in a patient with bilateral frontal lobe damage. 
J. Fish, T. Manly, B.A, Wilson (2008) 
Journal of the International Neuropsychological Society, 14: 154-163 
Evidence: 
Ten years after the original intervention with patient RP who had a selective impairment in translating intention to action (Evans, J, Emslie H and Wilson, B 1998) the compensatory aids given to the client (neuropage and a checklist) were no longer used. Considerably everyday problems were evident. No change in neuropsychological functioning was evident. In this study they reintroduce the two strategies separately, and examine effects on three common goals. The paging intervention had a dramatic effect on all three measured behaviors at a much more consistent level than a checklist. The results suggest that use of compensatory strategies for executive dysfunction can hold significant benefits for day-to-day function. The benefits of using automated reminding systems can extend much further than merely reminding people to do things, the authors suggest the pager can cue a process of goal monitoring that bridges the gap between intention and action. 
What types of messages are sent? 
Early after the launch of the service a review of the types and frequency of messages sent to the “first 40” patients was completed (Wilson et al 2003). Recently a repeat analysis of was completed (Martin-Saez et al., 2011). Broadly speaking the patterns were similar, although there were two new categories of messages that were not noted a decade earlier. Specifically, one group messages sent now reflecting changes over this period in our own awareness of the need to specifically remind clients to attend to their planning and organising “hygiene” (e.g., “check the diary”, “update the wall planner”) hence integrating the pager/SMS messages more into the routine of a broader memory and planning strategy.
0 100 200 300 400 500 600 
MEDICATION 
ORIENTATION 
FOOD 
HYGIENE 
CHORES 
FAMILY RESP. 
REST 
HOBBIES 
WORK/STUDY 
EXERCISE 
ONE OFF 
APPOINTMENTS 
SOCIAL 
NEUROPAGE 
TRANSPORT 
COGNITIVE REHAB 
PLANNING AND ORGANISING 
FIRST 40 LATEST 40 
Fig 2. Messages sent per week to 40 recent users of the Neuropage service 
The second new category refers to messages sent to support cognitive rehabilitation. 
Having the neuropage computer running in our clinic alongside our rehabilitation programme, 
we have seen the approach adopted as an adjunct to rehabilitation to reinforce home practice, 
spaced retrieval, etc of other elements of neuropsychological rehabilitation, for example to 
remind clients to practice relaxation or mood exercises. 
New developments in paging 
The original software and computer platform for delivering the service used a macII computer 
and dial-up modems. To ensure that the service could be delivered continuously, a rigorous 
regular back-up procedure was followed, in case of computer failure. A replica computer with 
the same software set-up was kept with the up-to-date database of messages to be sent. The 
only thing that stopped the messages being sent was that the back-up computer’s internal 
clock was set for one year in advance. In the event of a computer failure the only change that 
needed to be made was to change the year. 
Over the years since the start of the service, SMS text messaging has exploded in availability. 
Ownership of mobile phones has become almost universal. The service needed to adapt to 
this. 
About five years ago a new software platform was adopted (using a commercial company) 
who were able to develop for the service a Microsoft windows and internet based package 
that enables us to send messages over both the radiopaging and SMS text messaging 
networks. New features in the software include receipt confirmations and better error 
monitoring. Remote access to the computer enables on-call cover to monitor the service is 
operating 24/7. At the latest analysis the service was achieving more than 1000 messages 
delivered per week with less than 0.1% error/delays/failure. 
In implementing the new platform, it was decided to maintain the ability to use the 
radiopaging network because there are a few key observations that distinguish this approach
to sending and receiving messages. First, a radiopager is a very simple device; only one button need be pressed to retrieve the message. For a few more severely cognitively impaired individuals this has been an important element for accessibility. An attractive feature of the pager we have used has been that it continues to bleep intermittently until the message has been read. Second because it is a passive receive-only device, this has been considered attractive in some settings – for example a young boy in a school that had rules preventing use of mobile phones in class was allowed to use a pager in school. Third we noted that with some young people who use their mobile phones for chatting and social networking, the memory device separate from the phone enabled better attention to the messages that were being sent. 
Finally we have observed for some patients where the time of delivery of the message is critical, radiopaging provides a more reliable method of timely delivery. Although provider network capacity and reliability is improving all the time, SMS messaging has been liable to delay delivery of a message (e.g. if there are a lot of messages sent at a given time. The differences in technology behind the way radio-paged messages are sent and SMS messages are relayed, means that to date we have continued to recommend the use of the paging network for time-critical messages. 
Nonetheless, there has been a significant shift to the use of text messaging and for those who can navigate the complexities of their mobile phone for retrieval, storage or deleting of messages this is clearly an appropriate alternative. Of course there is a fine line here – once the patient is able to receive messages on more advanced PDA/smart phone devices at which point we would encourage the patient to consider programming their own routine of reminders into the calendar function of their PDA/smartphone. In this context the Neuropage service is seen as just this – a service provided by an administrator who can attend to the programming of the schedule for the patient who struggles to do this for themselves. 
New developments in sending of pictures or voice recorded alerts using the MMS platform open the possibility of improving accessibility of reminders to people who have difficulty accessing written text.
Clinical rehabilitation issues in delivering assistive technology. 
--------------------------- figure about here----------------------------------------------- 
Figure 3 
Stages of change considered in Motivational Interviewing: interventions from the clinician may need to be adapted to respond to the patient’s readiness to change (see van den Broek 2005). 
------------------------------------------------------------------------------------------------- 
Assistive technology provision is only one strand of a holistic approach to neuropsychological rehabilitation. In the final part of this chapter some simple points are worth making about the range of psychological interventions that may be needed to enable an individual to start using a device, for example to address insight, motivation or resistance. Martin van den Broek (2005) has outlined in an excellent article the role of techniques such as Motivational Interviewing (Rollnick, Miller and Butle, 2008) suggesting that it is important for the clinician to be aware of their patient’s location within a model that has been described in terms of stages of readiness to alter aspects of behaviour (Fig 3). Therapeutic conversations with the patient can then be focussed on harnessing intrinsic motivation to change (in this case, deciding to adopt a given memory strategy). 
Irrespective of which assistive technology strategy is used to overcome memory problems (diaries, alarms, pagers, smartphones etc), once a patient has decided which to adopt, it is then worth considering the literature on what has variably been termed “compliance” “adherence” or “abandonment”. On average 25% of medical interventions are not adhered to (Di Matteo 2004). There is no reason to expect a different rate following prescription of assistive technology in cognitive rehabilitation. Our experience with neuropage and our own NHS assistive technology service have found similar rates of abandonment. This topic deserves further exploration and research. However there are some pointers in the literature that help us to think about this. 
Factors related to abandonment 
Pre-contemplationcontemplation Preparation Action Maintenance RelapsePre-Relapse
Table adapted from Wessels et al 2003 
Factors related to non-use of provided assistive technology 
(Wessels et al 2003, p234) 
Personal (age, gender, diagnosis, own expectations, expectations of social circle, acceptance of disability, emotional maturity, inner motivation, progression of disability, severity of disability, change in severity of disability, use of multiple devices) (preference to “do it my way”, cognitive ability, especially memory and executive functions) 
Related to the assistive device (quality of the device, appearance of the device) (perceived stigma associated with device, batteries,other costs) 
Related to the user’s environment (social circle support, physical barriers, presence of opportunities, procedures of market for devices) 
(radio pager/mobile phone reception) 
Intervention related 
Taking user’s opinions into account 
Instruction and training 
Correct provision process and installation 
Length of delivery period 
(including expected length of time the device will be used for) 
Follow-up service 
The Table provides a list of some of the possible factors that may be worth considering in an attempt to anticipate potential failure of the intervention. Discussion of the patient’s expectations may for example reveal the concerns of ‘preventing recovery’- whether using a compensatory strategy will impede restoration of brain function, for example they may say “if I don’t force myself to remember, my memory will get weaker”. There is no evidence in support of this position and our immediate response may be to focus on the positive benefits of achieving activities independently, drawing parallels between the pager as a prosthesis such as a walking cane, drop-foot splint or spectacles. However, this type of resistance can also be an understandable reflection of the individual’s views on overcoming neuropsychological deficits. For this reason returning to an exploratory conversation will avoid falling into opposition with the patient. Likewise, evoking patient perspectives of the other elements on this table may be time well spent to ensure success. 
Finally, a discussion of rehabilitation would be incomplete without consideration of the patient’s goals. The state of the art in goal setting was recently reviewed in a special edition of the journal Clinical Rehabilitation (see Wade 2009). The key point for this chapter is remind ourselves that to enable evaluation of efficacy of neuropage or any rehabilitation intervention, a focus on the patients’ goals is vital. In my view, meaningful change measured in achievement of behavioural targets takes precedence over concern about whether a given region of the brain that is dedicated to prospective memory functioning, for instance. Wade (2009) suggests that “whenever a patient’s problems are sufficiently complex to require the involvement of a two or more people from different professions and/or the process is continued for more than a few days, then a formal goal-setting process may be needed to derive a set of goals that: 1) motivate the patient”; In the case of assistive technology as mentioned above setting a goal that is motivationally appropriate is reiterated here from a different perspective. 2) “ensure that individual team members work towards the same goals”; Encouraging different uses of the same memory prompting medium for example to achieve daily living goals and pay attention to mood management strategies; 3)”ensure that important actions are not overlooked.” In this scenario, one example is that some patients may need more than one copy of messages to be sent, or additional support to attend to details such as recharging batteries, and amending schedule on a regular basis; 4) “allow monitoring
of change to abort ineffective activities quickly”; where it is not working the clinician should review the assessment and findings and review the goal (quotes from Wade 2009 pp292-3). 
Conclusions 
Practical research studies in neuropsychological rehabilitation are essential, the body of neuropage research conducted by Wilson et al provide a useful example. Replication and refinement of these studies are needed. 
We have noted the enormous diversity of messages needed by patients and the benefit of simple devices for supporting some people in their overcoming daily living challenges caused by brain injury. 
Research has noted differences in response to treatment due to different pathologies (Fish et al., 2007). To achieve adherence/persisting use of technology clinicians and patients need to overcome cognitive, social, neurological challenges. 
Finally I have suggested that it is important to view assistive technology interventions like any other rehabilitative intervention where goal setting is fundamental. This chapter has not discussed the issues around routes to restoration of function compared with the concept of use compensation strategy, achievement of meaningful functional activities remains our priority as a core component of Holistic Neuropsychological Rehabilitation. 
References 
Andrich, D., Sheridan, B., Lou, G.(2007) RUMM2020. Perth, Australia: RUMM laboratory. 
Bateman, A., Teasdale, TW., Wilmes, K. (2009) Assessing construct validity of the self- rating version of the European Brain Injury Questionnaire (EBIQ) using Rasch analysis 
Neuropsychological Rehabilitation 19, 6.,941-954 
Di Matteo, MR. (2004) Variations in patients’ adherence to medical recommendations: a quantitative review of 50 years of research . Medical Care 42, 200-209 
Fish,J., Manly,T, Emslie, H.C., Evans, J.J., and Wilson, B.A. (2007) Compensatory strategies for acquired disorders of memory and planning: Differential effects of a paging system for patients with brain injury of traumatic versus cerebrovascular aetiology. Journal of Neurology, Neurosurgery and Psychiatry,. 2008(79)930-935 
Gillespie, A. Best, C. & O'Neill, B. (2012). Cognitive function and assistive technology for cognition: A review. Journal of the International Neuropsychological Society, 18, 1-19. 
Graffman,J 2008. Neurobehavioral Grand Rounds: Paging equals functionality (editorial) Journal of the International Neuropsychological Society, 14 ,01,152-153 
Martin-Saez, M., Deakins, J., Winson, R., Watson, P. and Wilson, B.A. (2011). A 10 year follow up of a paging service for people with memory and planning problems within a healthcare system: How do recent users differ from the original users? Neuropsychological Rehabilitation 21,6, 769-78 
Rollnick, S., Miller, WR and Butler, CC. (2012) Motivational Interviewing in Health Care: Helping Patients Change Behavior (Applications of Motivational Interviewing) Guildford Press
Stuss, DT. and Levine, B. 2002. Lessons from the Frontal Lobes. Annual Review of Psychology, 53, 401-433 
Stuss, DT. 2011a .Traumatic Brain Injury: Relation to executive dysfunction and the frontal Lobes. Current Opinion in Neurology, 24:584–589 
Stuss, DT, 2011b Functions of the Frontal Lobes: Relation to Executive Functions. Journal of the International Neuropsychological Society 17, 759–765. 
van den Broek, MD. (2005) “Why does neurorehabilitation fail”. Journal of Head Trauma and Rehabilitation, 20,5, 464-473 
Wilson, B. A., Scott, H., Evans, J., & Emslie, H. (2003). Preliminary report of a NeuroPage service within a health care system. Neurorehabilitation, 18, 3–9. 
Wade D.T. 2009 Goal setting in rehabilitation: an overview of what, why and how (editorial). Clinical Rehabilitation, 23, 291-295 
Wessels, R., Dijcks, B., Soeda, M., Gelerblom, G.J., and De Witte, L. (2003). Non-use of provided assistive technology devices, a literature overview. Technology and Disability,15 231-238 
Wilson, B.A., Emslie, H.C., Quirk, K. and Evans, J.J. (1999) George: Learning to Live Independently with NeuroPage. Rehabilitation Psychology. 44(3) 284-296 
Wilson, B.A., Evans, J., Gracey, F. and Bateman, A. (2009) Neuropsychological rehabilitation: Theory, models, therapy and outcome. Cambridge University Press. 
Wilson, B.A, Teasdale, T.W, Emslie, H, Quirk, K, Evans, J and Fish, J. (2009) Alleviation of carer strain during the use of NeuroPage device by people with acquired brain injury. J Neurol Neurosurg Psychiatry, 80:781–783

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Lessons from neuropage chapter

  • 1. Lessons from Neuropage: assistive technology in neuropsychological rehabilitation Andrew Bateman Oliver Zangwill Centre for Neuropsychological Rehabilitation Cambridgeshire Community Services NHS Trust Ely, Cambridgeshire, UK September 2012 Summary Compensating for prospective memory deficits using cognitive prosthetic devices appears to be an ecologically valid, sustainable, and cost-effective approach to Neuropsychological Rehabilitation. This chapter discusses the Neuropage Service that has run successfully for more than 10 years at the Oliver Zangwill Centre in Ely, Cambridgeshire, UK. Some of the insights and lessons we have learned over the years of delivering this service are outlined. In particular, it is interesting to see that in reviewing how the service has been used it is possible to notice a) the enormous diversity of reminder alerts and messages are needed by patients who have prospective memory difficulties b) the benefit of simple devices, c) we have seen adoption of this approach as an adjunct to rehabilitation to reinforce home practice, spaced retrieval, or alerting to increase activation-arousal. One of the often overlooked aspects concerns the adoption of assistive technology; there is a range of psychological interventions that may be needed to enable an individual to start using a device, for example to address insight, motivation or resistance. We have seen differences in response to treatment due to different pathologies. Whether the aids are a route to restoration or simply remain a compensatory strategy, achievement of meaningful functional activities remains our priority as a core component of Holistic Neuropsychological Rehabilitation. This is addressed through goal setting. BOX1 Case example Alex is a man who lives alone, he has severely impaired prospective memory secondary to epilepsy. Poor prospective memory especially causing poor medication adherence, that was compounded by his failure to regularly collect his prescription from the pharmacy. His disabilities also included impaired mobility although he is mobile around his community using an electric scooter. Note however that this scooter needs recharging. A programme of message alerts was devised to be sent to his radiopager supplied by the pager service. He needed several messages to enable him to take his tablets: first “its time to go and find your tablets in the kitchen” (he keeps them by the kettle). “are you in the kitchen yet to find your tablets?” (his slow mobility means he is liable to forget why he is heading to the kitchen without this reminder); “now take your tablets – for Monday morning - from the dosette box” (daily medication is counted out into a daily dispenser). He needed a message to remind him to charge his electric scooter. This is especially important the evening before his appointment once a month when he needed reminding to go to the pharmacy to collect a new prescription “pharmacy tomorrow, time to charge your scooter”….”good morning ,it’s Thursday today”… “ pharmacy today after breakfast”. This routine of messages meant that Alex improved his medication compliance to near 100% accuracy, his seizure management improved, he maintained his community mobility and independence, both he and his General Practitioner were delighted. He soon established this
  • 2. routine and after approximately six weeks, it was possible to start to reduce the frequency of messages. Background Compensating for prospective memory deficits is a logical use of assistive technology. This Chapter is a reflection on our use and provision of a cognitive prosthetic service known as Neuropage. The structure of the service is described briefly. The work represented in this chapter would not have been possible without the contributions of many people, and it arises from the context of The Oliver Zangwill Centre for Neuropsychological Rehabilitation. This is a Centre that was founded in 1996 by Professor Barbara Wilson OBE. Put simply, the Centre has four main functions. Primarily the Centre offers a Holistic Neuropsychological Rehabilitation programme for adults who live in the community. We have written in detail about the theory, therapy models and outcomes of work of the Centre (Wilson et al, 2009). The activities include comprehensive neuropsychological assessment of individuals and providing an intensive day rehabilitation programme that aims to help people overcome the cognitive, emotional and social consequences of acquired brain injury. Secondly, along side this work, the team are involved in a wide range of research and publication projects on neuropsychology. Thirdly, arising out of this, the specialist team are often involved in providing education events for carers and professionals. So it is from this context that fourthly, the Neuropage (www.neuropage.nhs.uk) service was opened as a small business element run from the Centre. This has been possible because of the neuropage research project and associated publications that have contributed to the neuropsychological rehabilitation evidence base. There is no doubt that the body of work this represents has been one of the major outputs and most cited outputs of Barbara Wilson and her research team from over the years. Ideally a clinical service should be offered that reflects the evidence available in any given field. The main research, completed more than a decade ago has been widely cited and re-analysed in editorials, systematic reviews and meta-analyses (eg Grafman, 2008; Gillespie, et al, 2012). The studies completed by Wilson and colleagues are recognised as high quality studies. The existence of the Service provides an example of implementation of research that has translated into a lasting service provision. Why provide a memory prompting service?: i) a clinical perspective It is axiomatic that clinical rehabilitation research should reflect the priorities of service users and their needs. It is well established that memory impairment is the most readily reported problem that follows brain injury. Figure 1 illustrates this by way of an analysis of responses to the European Brain Injury Questionnaire (EBIQ) by more than 200 patients who have attended The Oliver Zangwill Centre. The EBIQ is a 63 item questionnaire (see Bateman et al 2009) that lists 63 symptoms that follow brain injury and asks patients and carers to indicate whether the symptom has been a problem in the last month, with a simple 3 point Likert response (not at all, a little, a lot). This plot is called an item threshold map (Andrich, 2007), it depicts the relative probability of responses to each question expressed as a log- odds unit (‘logit’). It is quickly possible to see in the responses to the questionnaire, the relevance of assistive technology the neuropage work as patients report not only indicate memory as their main problem, but linked to this are the consequences of this, such as not getting things done on time, feeling unable to plan, and failing to participate in activities in our out of the home.
  • 3. ii) a neuropsychological theory rationale. It is beyond the scope of this Chapter to review all of the theories of memory and the vast literature on memory rehabilitation. It is important to note also that the problems described here are those of problems with executive functioning. One neuropsychological theory that can help explain this pattern of patient’s responses is found in consideration of frontal lobe functioning. One author who has written interesting articles on this subject is Stuss in a series of articles (Stuss and Levine, 2002, Stuss 2011a and 2011b). Two of the four systems he describes, the “Executive Cognitive Functions” that appear to be the function of the dorsolateral prefrontal cortex and the “Activation Regulating Functions” (Anterior cingulate and superior medial cortex) are particularly relevant and typically disrupted by acquired brain injury. That is to say, functions such as working memory, inhibition, control and direction, planning, monitoring, activating, switching, inhibiting of behaviours (Stuss, 2011a,b) are all things that may self evidently benefit from cognitive prosthetic support. For this chapter it is sufficient also to mention that patients that report problems in in the other two main domains of executive functioning that Stuss describes, namely “Metacognitive” and “Emotional” functions, have also found their way into the reminder schedules that we have sent to patients. About the Neuropage service Professor Barbara Wilson introduced the NeuroPage service to the UK after meeting with a Californian Neuropsychologist and Engineer-father of a young man who had suffered a brain injury. The Neuropage software was originally written to support college attendance. A programme of research into effectiveness of the approach was initiated in a collaboration of the Medical Research Council Cognition and Brain Sciences Unit and the Oliver Zangwill Centre. At the conclusion of the study it was considered that there was sufficient evidence to support implementation of a nationally available service (www.neuropage.nhs.uk). Memory Others not understanding Having to do things slowly Not getting things done on time Being unable to plan Difficulty making decisions Feeling unable to get things done Everything is an effort Feeling hopeless about future Feeling sad Reacting too quickly Lack of interest/hobbies outside home Lack of interest/hobbies inside home Hiding your feelings from others Figure 1. Threshold map first 14 items of European Brain Injury Questionnaire, n=225 adults with ABI (LOGITS)
  • 4. Box 2 A short summary of some of the research evaluating neuropage Barbara A. Wilson, Jonathan J Evans, Hazel Emslie, Vlastimil Malinek, 1997 Journal of Neurology, neurosurgery and Psychiatry; 63:113-115 NeuroPage was evaluated with 15 Neurologically impaired subjects all of whom had significant everyday memory problems, using a ABA single case experimental design. All subjects benefited from NeuroPage and showed a significant improvement in the percentage of tasks achieved, not only during the treatment period but also during the post- treatment phase. Reducing everyday memory and planning problems by means of a paging system: a randomized control crossover study B.A. Wilson, HC Emnslie, K Quirk, J.J. Evans, 2001 Journal of Neurology, Neurosurgery and Psychiatry; 70:477-482 Evidence: The results presented are about the group of 143 participants. The study concluded that there is evidence that the paging system enabled most of the participants to carry out more everyday tasks than they were able to achieve without the pager. They also found that the successful use was not confined to people of a particular age, sex, diagnostic group, level of impairment, time since insult or from particular social circumstances. The people for whom the paging system seems particularly useful are those with some insight, sufficient vision to read the screen without too much effort, and a lifestyle in which it is helpful to carry out some tasks independently. A randomized control trial to evaluate a paging system for people with traumatic brain injury B A. Wilson, H. Emslie, K Quirk, J Evans, & P Watson, 2005 Brain Injury, 19(11): 891–894 Evidence: 63 subjects with TBI (this paper provided a secondary analysis of the group was part of a larger group of 143 comprising several diagnostic groups); as with the main study, the group was randomly divided into 2 groups one was given the neuropage (Group A) while the other was allocated to a waiting list. After a 7 weeks of neuropage use, group A returned the neuropage which was then given to group B. Treatment target activities were agreed with participants such as taking medication or remember to prepare food. Performance achievement was assessed at baseline (before any group had de neuropage, after 7 weeks trial of group A with neuropage and after 7 weeks group B had the neuropage. There were significant differences at all 3 periods to conclude that this paging system significantly reduces the everyday memory and planning problems of people with TBI. NeuroPage showed on average, a 30%increase in attainment of individually specified goals (Wilson et al.,1997,2001) External cueing systems in the rehabilitation of executive impairments of action J. Evans, H Emslie , B. A. Wilson (2008) Journal of the international neuropsychological Society 4:399-408
  • 5. Evidence: The use of the neuropage and a paper and pencil checklist in the rehabilitation of executive problems in a 50-year-old woman who had a stroke 7 years earlier (RP). An ABAB single- case experimental design was used to evaluate the impact of NeuroPage on the ability of RP to carry out the target actions identified without prompting. The NeuroPage had a dramatic effect on the probability of RP carrying out her intended actions at the appropriate time. It was hypothesized that the NeuroPage not only prompted RP to initiate action but the bleeping of the pager actually brought about an increase in attentional arousal, thus enabling the initiation of action to take place. The increased arousal also improved RP’s ability to sustain her attention over the time period required to carry out an action. Long-term compensatory treatment of organizational deficits in a patient with bilateral frontal lobe damage. J. Fish, T. Manly, B.A, Wilson (2008) Journal of the International Neuropsychological Society, 14: 154-163 Evidence: Ten years after the original intervention with patient RP who had a selective impairment in translating intention to action (Evans, J, Emslie H and Wilson, B 1998) the compensatory aids given to the client (neuropage and a checklist) were no longer used. Considerably everyday problems were evident. No change in neuropsychological functioning was evident. In this study they reintroduce the two strategies separately, and examine effects on three common goals. The paging intervention had a dramatic effect on all three measured behaviors at a much more consistent level than a checklist. The results suggest that use of compensatory strategies for executive dysfunction can hold significant benefits for day-to-day function. The benefits of using automated reminding systems can extend much further than merely reminding people to do things, the authors suggest the pager can cue a process of goal monitoring that bridges the gap between intention and action. What types of messages are sent? Early after the launch of the service a review of the types and frequency of messages sent to the “first 40” patients was completed (Wilson et al 2003). Recently a repeat analysis of was completed (Martin-Saez et al., 2011). Broadly speaking the patterns were similar, although there were two new categories of messages that were not noted a decade earlier. Specifically, one group messages sent now reflecting changes over this period in our own awareness of the need to specifically remind clients to attend to their planning and organising “hygiene” (e.g., “check the diary”, “update the wall planner”) hence integrating the pager/SMS messages more into the routine of a broader memory and planning strategy.
  • 6. 0 100 200 300 400 500 600 MEDICATION ORIENTATION FOOD HYGIENE CHORES FAMILY RESP. REST HOBBIES WORK/STUDY EXERCISE ONE OFF APPOINTMENTS SOCIAL NEUROPAGE TRANSPORT COGNITIVE REHAB PLANNING AND ORGANISING FIRST 40 LATEST 40 Fig 2. Messages sent per week to 40 recent users of the Neuropage service The second new category refers to messages sent to support cognitive rehabilitation. Having the neuropage computer running in our clinic alongside our rehabilitation programme, we have seen the approach adopted as an adjunct to rehabilitation to reinforce home practice, spaced retrieval, etc of other elements of neuropsychological rehabilitation, for example to remind clients to practice relaxation or mood exercises. New developments in paging The original software and computer platform for delivering the service used a macII computer and dial-up modems. To ensure that the service could be delivered continuously, a rigorous regular back-up procedure was followed, in case of computer failure. A replica computer with the same software set-up was kept with the up-to-date database of messages to be sent. The only thing that stopped the messages being sent was that the back-up computer’s internal clock was set for one year in advance. In the event of a computer failure the only change that needed to be made was to change the year. Over the years since the start of the service, SMS text messaging has exploded in availability. Ownership of mobile phones has become almost universal. The service needed to adapt to this. About five years ago a new software platform was adopted (using a commercial company) who were able to develop for the service a Microsoft windows and internet based package that enables us to send messages over both the radiopaging and SMS text messaging networks. New features in the software include receipt confirmations and better error monitoring. Remote access to the computer enables on-call cover to monitor the service is operating 24/7. At the latest analysis the service was achieving more than 1000 messages delivered per week with less than 0.1% error/delays/failure. In implementing the new platform, it was decided to maintain the ability to use the radiopaging network because there are a few key observations that distinguish this approach
  • 7. to sending and receiving messages. First, a radiopager is a very simple device; only one button need be pressed to retrieve the message. For a few more severely cognitively impaired individuals this has been an important element for accessibility. An attractive feature of the pager we have used has been that it continues to bleep intermittently until the message has been read. Second because it is a passive receive-only device, this has been considered attractive in some settings – for example a young boy in a school that had rules preventing use of mobile phones in class was allowed to use a pager in school. Third we noted that with some young people who use their mobile phones for chatting and social networking, the memory device separate from the phone enabled better attention to the messages that were being sent. Finally we have observed for some patients where the time of delivery of the message is critical, radiopaging provides a more reliable method of timely delivery. Although provider network capacity and reliability is improving all the time, SMS messaging has been liable to delay delivery of a message (e.g. if there are a lot of messages sent at a given time. The differences in technology behind the way radio-paged messages are sent and SMS messages are relayed, means that to date we have continued to recommend the use of the paging network for time-critical messages. Nonetheless, there has been a significant shift to the use of text messaging and for those who can navigate the complexities of their mobile phone for retrieval, storage or deleting of messages this is clearly an appropriate alternative. Of course there is a fine line here – once the patient is able to receive messages on more advanced PDA/smart phone devices at which point we would encourage the patient to consider programming their own routine of reminders into the calendar function of their PDA/smartphone. In this context the Neuropage service is seen as just this – a service provided by an administrator who can attend to the programming of the schedule for the patient who struggles to do this for themselves. New developments in sending of pictures or voice recorded alerts using the MMS platform open the possibility of improving accessibility of reminders to people who have difficulty accessing written text.
  • 8. Clinical rehabilitation issues in delivering assistive technology. --------------------------- figure about here----------------------------------------------- Figure 3 Stages of change considered in Motivational Interviewing: interventions from the clinician may need to be adapted to respond to the patient’s readiness to change (see van den Broek 2005). ------------------------------------------------------------------------------------------------- Assistive technology provision is only one strand of a holistic approach to neuropsychological rehabilitation. In the final part of this chapter some simple points are worth making about the range of psychological interventions that may be needed to enable an individual to start using a device, for example to address insight, motivation or resistance. Martin van den Broek (2005) has outlined in an excellent article the role of techniques such as Motivational Interviewing (Rollnick, Miller and Butle, 2008) suggesting that it is important for the clinician to be aware of their patient’s location within a model that has been described in terms of stages of readiness to alter aspects of behaviour (Fig 3). Therapeutic conversations with the patient can then be focussed on harnessing intrinsic motivation to change (in this case, deciding to adopt a given memory strategy). Irrespective of which assistive technology strategy is used to overcome memory problems (diaries, alarms, pagers, smartphones etc), once a patient has decided which to adopt, it is then worth considering the literature on what has variably been termed “compliance” “adherence” or “abandonment”. On average 25% of medical interventions are not adhered to (Di Matteo 2004). There is no reason to expect a different rate following prescription of assistive technology in cognitive rehabilitation. Our experience with neuropage and our own NHS assistive technology service have found similar rates of abandonment. This topic deserves further exploration and research. However there are some pointers in the literature that help us to think about this. Factors related to abandonment Pre-contemplationcontemplation Preparation Action Maintenance RelapsePre-Relapse
  • 9. Table adapted from Wessels et al 2003 Factors related to non-use of provided assistive technology (Wessels et al 2003, p234) Personal (age, gender, diagnosis, own expectations, expectations of social circle, acceptance of disability, emotional maturity, inner motivation, progression of disability, severity of disability, change in severity of disability, use of multiple devices) (preference to “do it my way”, cognitive ability, especially memory and executive functions) Related to the assistive device (quality of the device, appearance of the device) (perceived stigma associated with device, batteries,other costs) Related to the user’s environment (social circle support, physical barriers, presence of opportunities, procedures of market for devices) (radio pager/mobile phone reception) Intervention related Taking user’s opinions into account Instruction and training Correct provision process and installation Length of delivery period (including expected length of time the device will be used for) Follow-up service The Table provides a list of some of the possible factors that may be worth considering in an attempt to anticipate potential failure of the intervention. Discussion of the patient’s expectations may for example reveal the concerns of ‘preventing recovery’- whether using a compensatory strategy will impede restoration of brain function, for example they may say “if I don’t force myself to remember, my memory will get weaker”. There is no evidence in support of this position and our immediate response may be to focus on the positive benefits of achieving activities independently, drawing parallels between the pager as a prosthesis such as a walking cane, drop-foot splint or spectacles. However, this type of resistance can also be an understandable reflection of the individual’s views on overcoming neuropsychological deficits. For this reason returning to an exploratory conversation will avoid falling into opposition with the patient. Likewise, evoking patient perspectives of the other elements on this table may be time well spent to ensure success. Finally, a discussion of rehabilitation would be incomplete without consideration of the patient’s goals. The state of the art in goal setting was recently reviewed in a special edition of the journal Clinical Rehabilitation (see Wade 2009). The key point for this chapter is remind ourselves that to enable evaluation of efficacy of neuropage or any rehabilitation intervention, a focus on the patients’ goals is vital. In my view, meaningful change measured in achievement of behavioural targets takes precedence over concern about whether a given region of the brain that is dedicated to prospective memory functioning, for instance. Wade (2009) suggests that “whenever a patient’s problems are sufficiently complex to require the involvement of a two or more people from different professions and/or the process is continued for more than a few days, then a formal goal-setting process may be needed to derive a set of goals that: 1) motivate the patient”; In the case of assistive technology as mentioned above setting a goal that is motivationally appropriate is reiterated here from a different perspective. 2) “ensure that individual team members work towards the same goals”; Encouraging different uses of the same memory prompting medium for example to achieve daily living goals and pay attention to mood management strategies; 3)”ensure that important actions are not overlooked.” In this scenario, one example is that some patients may need more than one copy of messages to be sent, or additional support to attend to details such as recharging batteries, and amending schedule on a regular basis; 4) “allow monitoring
  • 10. of change to abort ineffective activities quickly”; where it is not working the clinician should review the assessment and findings and review the goal (quotes from Wade 2009 pp292-3). Conclusions Practical research studies in neuropsychological rehabilitation are essential, the body of neuropage research conducted by Wilson et al provide a useful example. Replication and refinement of these studies are needed. We have noted the enormous diversity of messages needed by patients and the benefit of simple devices for supporting some people in their overcoming daily living challenges caused by brain injury. Research has noted differences in response to treatment due to different pathologies (Fish et al., 2007). To achieve adherence/persisting use of technology clinicians and patients need to overcome cognitive, social, neurological challenges. Finally I have suggested that it is important to view assistive technology interventions like any other rehabilitative intervention where goal setting is fundamental. This chapter has not discussed the issues around routes to restoration of function compared with the concept of use compensation strategy, achievement of meaningful functional activities remains our priority as a core component of Holistic Neuropsychological Rehabilitation. References Andrich, D., Sheridan, B., Lou, G.(2007) RUMM2020. Perth, Australia: RUMM laboratory. Bateman, A., Teasdale, TW., Wilmes, K. (2009) Assessing construct validity of the self- rating version of the European Brain Injury Questionnaire (EBIQ) using Rasch analysis Neuropsychological Rehabilitation 19, 6.,941-954 Di Matteo, MR. (2004) Variations in patients’ adherence to medical recommendations: a quantitative review of 50 years of research . Medical Care 42, 200-209 Fish,J., Manly,T, Emslie, H.C., Evans, J.J., and Wilson, B.A. (2007) Compensatory strategies for acquired disorders of memory and planning: Differential effects of a paging system for patients with brain injury of traumatic versus cerebrovascular aetiology. Journal of Neurology, Neurosurgery and Psychiatry,. 2008(79)930-935 Gillespie, A. Best, C. & O'Neill, B. (2012). Cognitive function and assistive technology for cognition: A review. Journal of the International Neuropsychological Society, 18, 1-19. Graffman,J 2008. Neurobehavioral Grand Rounds: Paging equals functionality (editorial) Journal of the International Neuropsychological Society, 14 ,01,152-153 Martin-Saez, M., Deakins, J., Winson, R., Watson, P. and Wilson, B.A. (2011). A 10 year follow up of a paging service for people with memory and planning problems within a healthcare system: How do recent users differ from the original users? Neuropsychological Rehabilitation 21,6, 769-78 Rollnick, S., Miller, WR and Butler, CC. (2012) Motivational Interviewing in Health Care: Helping Patients Change Behavior (Applications of Motivational Interviewing) Guildford Press
  • 11. Stuss, DT. and Levine, B. 2002. Lessons from the Frontal Lobes. Annual Review of Psychology, 53, 401-433 Stuss, DT. 2011a .Traumatic Brain Injury: Relation to executive dysfunction and the frontal Lobes. Current Opinion in Neurology, 24:584–589 Stuss, DT, 2011b Functions of the Frontal Lobes: Relation to Executive Functions. Journal of the International Neuropsychological Society 17, 759–765. van den Broek, MD. (2005) “Why does neurorehabilitation fail”. Journal of Head Trauma and Rehabilitation, 20,5, 464-473 Wilson, B. A., Scott, H., Evans, J., & Emslie, H. (2003). Preliminary report of a NeuroPage service within a health care system. Neurorehabilitation, 18, 3–9. Wade D.T. 2009 Goal setting in rehabilitation: an overview of what, why and how (editorial). Clinical Rehabilitation, 23, 291-295 Wessels, R., Dijcks, B., Soeda, M., Gelerblom, G.J., and De Witte, L. (2003). Non-use of provided assistive technology devices, a literature overview. Technology and Disability,15 231-238 Wilson, B.A., Emslie, H.C., Quirk, K. and Evans, J.J. (1999) George: Learning to Live Independently with NeuroPage. Rehabilitation Psychology. 44(3) 284-296 Wilson, B.A., Evans, J., Gracey, F. and Bateman, A. (2009) Neuropsychological rehabilitation: Theory, models, therapy and outcome. Cambridge University Press. Wilson, B.A, Teasdale, T.W, Emslie, H, Quirk, K, Evans, J and Fish, J. (2009) Alleviation of carer strain during the use of NeuroPage device by people with acquired brain injury. J Neurol Neurosurg Psychiatry, 80:781–783