research

The best laid plans...

Given the increasing use of percutaneous endoscopic gastostomy (PEG) tube insertion, it is important that we understand the implications for adults with learning disabilities at end of life, when many of them will also have developed dementia. Although Paula Leslie, Hannah Crawford and Heather Wilkinsons international research project to establish baselines did not go to plan, there have been useful outcomes in terms of networking, sharing information and preparing the ground for future research.
ercutaneous endoscopic gastrostomy (PEG) tube insertion is an effective way of providing nutrition, although indications for insertion are varied and controversial (see Guidelines and references in White, 1998; Stroud et al., 2003). A study of the workload of a newly formed PEG advice team based at the Royal Victoria Infirmary in Newcastle (Matthewson et al., 2001) reported that during 4 audit cycles (6 month periods) the rate of PEG insertions increased by 53 per cent, and the rate of PEG replacements by 315 per cent. The use of PEG tubes for people with dysphagia is increasing (Bannerman et al., 1997) with evidence of benefit in certain cases (Ayonrinde & Mcdonald, 2004). Concern has however been expressed about the use of PEG tubes for people with end-stage dementia or other progressive neurological disease. This is particularly the case in the United States of America, where it is now thought that more than one third of severely cognitively impaired residents in US nursing homes have feeding tubes (Mitchell et al., 2003). Within the generic care literature there is little evidence to support the use of tube feeding in people with dementia (Sanders & Bardhan, 2004; Mackie, 2001; Hoefler, 2000; Finucane et al., 1999), although the design of these studies must be considered carefully. In some cases, people received a PEG too far into the disease process and were already malnourished so it is hardly surprising the outcomes were not positive.
READ THIS IF YOU ARE INTERESTED IN END OF LIFE ISSUES BENCHMARKING EXPLORATORY STUDIES

cal concern with the likely increase in incidence of dementia due to improved life expectancy. Early work in the USA and Ireland indicated that the types of care and the processes and protocols applicable to the use of PEG tubes are different from those in the UK. The State University of New York contributed towards funding so that we could develop themes arising out of their preliminary work (McCarron & Lawlor, 2003, McCarron et al., 2005). We hoped to provide useful baseline information to contribute to the development of an evidence base concerning the use of PEG tubes in the UK for adults with learning disabilities at end of life.

Paula Leslie

Hannah Crawford

Heather Wilkinson

We hoped to provide useful baseline information to contribute to the development of an evidence base
PEG tube feeding decisions and related experiences are also of great importance in other population groups, particularly where end of life issues and progressive incapacity such as dementia are involved. It is essential that decisions surrounding feeding in any population group are as consistent as possible, making the best use of available evidence, to ensure optimum care for patients.

Critical concern

Nutritional and other benefits have been found with the use of PEG tubes for adults with learning disabilities (Kennedy et al., 1997) but there is a lack of published evidence on the use of PEG tubes for this group at end of life. In the learning disabled population, people with Downs syndrome have a higher incidence of dementia than the general population (Cosgrave et al., 2000). Understanding the use of PEG tubes for adults with learning disabilities is an ever more criti-

Lay the foundation

Our exploratory study, in collaboration with State University of New York, was the first of its kind in the UK. It was designed to build on existing evidence and lay the foundation for future larger studies within the field of adult learning disability, dementia and other progressive neurological illnesses. We intended that the

results would identify areas for further research associated with feeding decisions for adults with learning disabilities at end of life. This would include identifying areas of consistency in the experiences of the client group with PEG feeds which could be compared to a control group of orally fed adults with learning disabilities, or to adults from a different population group who were also fed by PEG tube. We also intended that the study would support the production of guidelines for decision-making surrounding non-oral nutrition / hydration for adults with learning disabilities. Finally, we wanted to validate the assessment tool used in the Irish and American studies with a view to developing it for prospective studies that would build on the issues identified from analysis of the data collected in the course of this study. In addition to the authors, the research team comprised Christine Armstrong, Triage Nurse, and Dorothy Matthews, a Specialist Macmillan Nurse, both with Northgate & Prudhoe NHS Trust. We planned a retrospective review of closed files from the past 10 years of adults with a diagnosed learning disability who had had a PEG tube fitted in the 12 months prior to their death. The purpose was: a) to gather data on the reasons for PEG tube use and selected health experiences pre and post insertion, and b) having established an average period from the time of tube insertion to death, to gather data for a corresponding time period on the same selected health experiences for people with learning disabilities with certain matched characteristics but without PEG tube intervention. Local Ethical Favourable Opinion was granted by Northumberland Local Research Ethics Committee. Consent was not necessary under the Data Protection Act 1998 due to the records being closed. We examined the closed records held by an NHS Trust to identify those people who had learning disabilities and had had a PEG tube 17

SPEECH & LANGUAGE THERAPY IN PRACTICE SPRING 2008

RESearch inserted within 12 months prior to the date of death. Data collection focused on a list of case files drawn from the medical records database and from personal historic knowledge of patient deaths in the last ten years. The Trust is a specialist provider of services for adults with learning disabilities. We recognised there may have been people with learning disabilities in the community who had a PEG tube inserted at end of life, but limited resources meant we did not search GP records. The assessment tool was based on a record-review template previously field-tested in the Irish and American studies and developed with input from the research team. We used a checklist format and added qualitative narrative alongside entries explaining decisions made and raising questions about the data. The research team discussed notes and questions to reach consensus on how recordsbased data were recorded on the template. Key data elements included demographic characteristics of the patient, diagnosis, documented reasons for PEG tube use, incidence of chest and mouth infections, pressure sores, skin breakdowns, incidence of diarrhoea and vomiting, weight loss and gain and incidence of restraint use. We recorded medications that were being administered at the time of PEG tube insertion and at the time of death. We also noted indicators for dementia including formal diagnosis, observations of confusion and memory loss and medications such as Aricept (used in the treatment of some dementias).
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Reliability

Researcher reliability is an issue with any assessment tool. We aimed to maximise reliability by a pre-investigation study session in February 2005 to familiarise the researchers with the assessment tool and with practical issues experienced in the previous studies. Dr McCallion and Dr McCarron flew to Newcastle specifically to lead and facilitate this session. The researchers contributed to the development of the tool and were familiar with it.

In attempting to perform this piece of work a group of clinicians and researchers came together who otherwise might not have met
The project was funded from 1 January 2005 30 June 2005. Development of the project design and methodology and initial contacts with the Trust took place in January. A focus group meeting and assessment tool training session at the start of February was attended by the research team. The data collection period started
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on the first available session following Local Research and Ethics Committee and Research & Development approvals. Two further focus group meetings took place at the end of April when analysis of the collected data was about to commence, and at the end of May in order to comment and advise on data, analysis and initial findings. A number of difficulties encountered with data collection proved to be too serious to overcome during this pilot study; this information is vital to inform the design of future studies. 1. Locating complete sets of notes was the most serious barrier. Once a person died, their notes were often fragmented and impossible to collate. 2. Notes were not formatted correctly 3. Large volume of notes per client 4. Environmental problems, such as a lack of space to decant large volume of notes per client 5. Lack of clerical support within the medical records division for locating records 6. Template was complex and did not match up with the case note sequence. Although we were unable to complete the study as originally intended we were able to host a study day, open to a wide range of disciplines who work with adults with learning disabilities and / or dementia. Attendees included health care assistants, nurses, speech and language therapists, occupational therapists, physiotherapists and hotel service representa-

STOCKPORT CEREBRAL PALSY SOCIETY

PART-TIME SPEECH AND LANGUAGE THERAPIST

Salary range of 23,458 - 31,779 pro rata dependent upon experience
Stockport Cerebral Palsy Society is a dynamic and forward thinking voluntary organisation which is proud of its record of providing high quality care services. We are looking for an enthusiastic therapist who is able to work independently and has experience of working with adults who have learning disabilities and complex needs. The work will initially be within our Skills Group day service for adults with complex disabilities but there is scope for further developments within our other services. The hours of work will be between 10 and 20 hours per week. Days and times of working are by negotiation but need to meet the needs of the service. A minimum of 2 years post-qualification experience is required. The successful candidate is likely to have experience using alternative and augmentative communication devices and experience in dysphagia management. For further information or to arrange an informal visit please contact Sarah Thomas, Skills Group Manager on 0161 432 1248. For an application pack, please contact Stockport Cerebral Palsy Society Recruitment Line on 0161 432 5252 or e-mail admin@stockportcp.co.uk. Please quote ref. no. S39 Closing date Friday 4th April 2008

3 day Specialist Speech and Language Therapy Course 16th to 18th April 2008 Sheffield
The Downs Syndrome Association has commissioned Symbol UK Ltd, who provide specialist speech and language therapy services for people who have Downs syndrome, to offer a three day course for speech and language therapists. Topics covered include: the needs of the client group across all ages; research underpinning Evidence Based Practice; and designing and delivering effective interventions. For further information or to book a place please contact Lesley Alabaf at Downs Syndrome Association, on 0845 230 0372 or email lesley.alabaf@downs-syndrome.org.uk

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SPEECH & LANGUAGE THERAPY IN PRACTICE SPRING 2008

RESEARCH tives. The research team presented on several issues and held discussion groups around practical questions. Themes from the discussions included issues around current practice, what makes for successful intervention, our professional roles who is involved in this area and what do we do, end of life issues, and directions for future research. There are a number of future studies now in development and the research group is working on grants for submission in the near future. phagia in people with learning disabilities. We are beginning an investigation into the prevalence of dysphagia within a finite population of adults with learning disabilities. We retain a keen interest in the issues of ageing, ethics and risk that are related to dysphagia. We are also investigating how we might involve service users in our research, and how they may be able to give us some indication of how dysphagia affects their quality of life. The findings from these projects will have direct relevance to all vulnerable people facing such difficulties at the SLTP end of their lives. Paula Leslie is an Associate Professor at the University of Pittsburgh, USA, and an RCSLT Professional Advisor, e-mail pleslie@pitt.edu. Hannah Crawford is a consultant speech and language therapist for Tees, Esk & Wear Valleys NHS Trust working with adults with learning disabilities and dysphagia, e-mail Hannah.Crawford@cddps.nhs.uk. She is also an RCSLT Professional Advisor. Heather Wilkinson is Co-director of the Centre for Research on Families and Relationships at the University of Edinburgh, e-mail hwilkins@ staffmail.ed.ac.uk.

Generated ideas

In attempting to perform this piece of work a group of clinicians and researchers came together who otherwise might not have met. As far as we are aware, such a group had not formed before in this field and this generated ideas from a new mix of backgrounds. The study has led to the formation of a working group that includes the authors and Dorothy Matthews with Lynn Gibson (Physiotherapy Manager) and Dr Claud Regnard (Consultant in Palliative Care Medicine). Work based on group discussions and developed from the study day was accepted after peer review for an oral presentation at the American Speech-Language-Hearing Association (ASHA) Convention 2005. This is the largest international meeting of speech and language therapists in the world with over 12,000 delegates. The title of the meeting was Using Evidence to Support Clinical Practice. Around 275 people attended the session at 8.00 am on the first day of the convention, a clear indication of the clinical relevance. Lively debate ensued and discussion covered the literature, clinical experiences and real case studies. Several differences between UK and USA practice, legislation and ethos were highlighted. The lack of evidence in this field was emphasised again. This indicates the importance of future research. We also held a seminar on eating and drinking issues in Edinburgh (2006) at the meeting Practical approaches to supporting adults with learning disabilities who are growing older.

We are also investigating how we might involve service users in our research, and how they may be able to give us some indication of how dysphagia affects their quality of life.
Research needs to be planned carefully but even the best laid plans can go awry. Generally you should not deviate from a research protocol changing the method half way through negates the value of your results and shows you hadnt thought the process out properly to start with. Careful monitoring of the data gathering allowed us to see where a problem was arising but the protocol was followed in the knowledge that the closed cases did exist; in the end the barriers encountered in gathering complete data meant that the project ran out of time and resources. One positive outcome of the research team working together was the associated study day which gave immediate benefit to the participants in knowledge sharing and further ideas for us to work with. The area of nutrition support methods for adults with learning disabilities and at end of life is of direct clinical relevance and is increasing in priority. The multidisciplinary research group remains committed to investigating dys-

DO I TREAT CASE NOTES RESPECTFULLY AS A HISTORICAL DOCUMENT? DO I LOOK FOR THE BENEFITS I CAN SALVAGE AND BUILD ON WHEN A PROJECT HASNT GONE TO PLAN? DO I UNDERSTAND THE LEGAL AND ETHICAL PROCESSES REQUIRED FOR ANY RESEARCH STUDY?

REFLECTIONS

References

Ayonrinde, O.T. & Mcdonald, J.A. (2004) Indications, appropriateness and 30-day outcomes of patients referred for percutaneous endoscopic gastrostomy (PEG) tube insertion, Journal of Gastroenterology and Hepatology 19 Supp Oct A233. Bannerman, E., Pendlebury, J., Philips, F. & Ghosh, S. (1997) Increase in percutaneous endoscopic gastrostomy (PEG) feeding - Implications for the workload of a nutrition support team, Gut 41(4S) Supp October 90A. Cosgrave, M.P., Tyrrell, J., McCarron, M., Gill, M. & Lawlor, B.A. (2000) A five year follow-up study of dementia in persons with Downs Syndrome: early symptoms and patterns of deterioration, Irish Journal Psych Med 17(1), pp.5-11. Finucane, T., Christmas, C. & Travis, K. (1999) Tube feeding inpatients with advanced dementia: a review of the evidence, JAMA 282, pp.136570. Hoefler, J.M. (2000) Making decisions about tube feeding for severely demented patients at the end of life: Clinical, legal and ethical considerations, Death Studies 24, pp.233-254. Kennedy, M., McCombie, L., Dawes, P., McConnell, K. & Dunnigan, M.G. (1997) Nutritional support for patients with intellectual disability and nutrition/dysphagia disorders in community care, Journal of Intellectual Disability Research 41(5), pp.430-436.

Mackie, S.B. (2001) PEGs and Ethics, Gastroenterology Nursing 24(3), pp.138-142. McCarron, M. & Lawlor, B.A. (2003) Responding to the Challenges of Ageing and Dementia in Intellectual Disability in Ireland, Ageing and Mental Health 7(6), pp.413-417. McCarron, M., Gill, M., McCallion, P. & Begley, C. (2005) Health Co morbidities in Ageing Persons with Down syndrome and Alzheimers dementia, JIDR 49(7), pp.560-566. Matthewson, K.,White, S., Torrance, A., Clark, S. & Bottrill, P. (2001) A prospective study of the workload of a newly formed PEG advice team, Journal of Human Nutrition & Dietetics 14(1) pp.21-23. Mitchell, S.L., Teno, J.M., Roy, J., Kabamoto, G. & Mor, V. (2003) Clinical and Organizational Factors Associated With Advanced Cognitive Impairment, Journal of the American Medical Association 290(1), pp.7380. Sanders, D.S. & Bardhan, K.D. (2004) Feeding tubes in dementia: is there an effective UK strategy?, BMJ 329, pp. 917-918. Stroud, M., Duncan, H. & Nightingale, J. (2003) Guidelines for enteral feeding in adult hospital patients. GUT 52 (Suppl VII): vii1 vii12. White, S. (1998) Percutaneous endoscopic gastrostomy (PEG), Nursing Standard 12(28), pp.41-47.
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