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

Prep

aration

Action

Maintenance

Relapse

Pre-contemplationcontemplation

Prep

aration

Action

Maintenance

Relapse

Pre-contemplationcontemplation

Prep

aration

Action

Maintenance

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.

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