spina bifida adult resource team: review of first 12 … · over 30 years’ experience in treating...

SPINA BIFIDA ADULT RESOURCE TEAM:

REVIEW OF FIRST 12 MONTHS.

This report was prepared for the Agency for Clinical Innovation By Northcott Disability Services

February, 2011

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Northcott Disability Services SBART: Review of first 12 months

ACKNOWLEDGEMENTS

Clients and families of the Spina Bifida Adult Resource Team

Agency for Clinical Innovation

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TABLE OF CONTENTS

I ACKNOWLEDGEMENTS II 1. BACKGROUND

2. AIMS OF THE PROJECT

3. METHOD

3.1 Participants.

3.2 Data collected.

4. FINDINGS

4.1 Demographic information.

4.2 Hospital admissions.

4.3 Referrals made.

4.4 Interventions received.

5. LIMITATIONS OF THE REPORT

REFERENCES APPENDIX A: Memorandum of Understanding APPENDIX B: Case Study “Mitchell” APPENDIX C: Case Study “Jessica”

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The project presented in this report has not sought ethics approval through an institution. Though all clients who have thus far sought SBART assistance gave verbal permission to the collection of aggregated de-identified demographic data, written consents were sought retrospectively (with 70% returned and consent granted). Professional stakeholders who contributed data gave written consent, including the use of their names. Client case studies, also used in this report, were consented to in writing by relevant clients. For case studies, identifying details removed. All data was accessible only by team members writing the report and was stored on a pass-word protected computer. To respect the continued confidentiality of participants, and in line with professional ethics, it is recommended that this report be treated as an internal report only.

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1. BACKGROUND

Spina bifida is a neural tube deficit, with around 90% of children also affected by hydrocephalus (Bolt, Rawicki & Donellan, 2002). Many individuals with spina bifida have complex and ongoing health needs that will likely require support for the duration of life. Such health needs might require neurological, urological, surgical and allied health supports. In childhood, these health supports are offered in a relatively streamlined method through the paediatric system, ensuring comprehensive health care management. However, as individuals transit into adulthood there is an implicit expectation that they will increasingly manage their own health care needs. Finding appropriate adult health services that can understand and support these complex care needs can be a challenge (Lam, Fitzgerald & Sawyer, 2005), and there has been a growing realisation by health care providers that people with spina bifida may require support to successfully transit from the paediatric to adult health care system. (Bowman, McLone, Grant, Tomita, & Ito, 2001). Successful transition, defined as “the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centred to adult-orientated health care systems” (Blum, Garrell, Hodgman & Slap, 1993, p. 570) may potentially be linked to enhanced quality of life. If transitions are not smooth there is increased risk of hospital admission (Bowman et al, 2001) particularly so with increased complexity of health care need. Recently in NSW the Transition Care Network established by the Greater Metropolitan Clinical Taskforce (GMCT), now the Agency for Clinical Innovation (ACI) has focussed attention on the difficulties faced by many young people with spina bifida as they attempt to navigate this transition.

Clinicians in the spina bifida collaborative, based in Sydney, sought for many years to improve access to the health system for adults. In 2004 the spina bifida collaborative consulted with the GMCT Transition Network Manager Lynne Brodie to assist in supporting the development of a state-wide service. With the provision of clinical data and strong advocacy by clinicians, the proposal to fund a state-wide resource team for adults with spina bifida was accepted. On the 10th of August 2009 the Spina Bifida Adult Resource Team (SBART), funded through the NSW Department of Health and hosted by Northcott Disability Services, commenced. The purpose of the SBART is to provide access to a multidisciplinary team that offers clinical consultation, case management, and liaison between paediatric and adult services to ensure continuity of care (see Appendix A for copy of Memorandum of Understanding). The team currently comprises one full time equivalent (FTE) clinical nurse consultant (CNC) and one 0.8 FTE allied health professional (occupational therapist). At the end of September 2010, ACI provided SBART with additional funding to support a project officer to collect data on the outcomes of the first 12 months of service (defined as the period August 2009 to August 2010). A project officer role was funded for one day a week for 3 months, commencing in October 2010. This report represents the findings on outcomes achieved.

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2. AIMS OF THE PROJECT

The project aimed to:

Obtain demographic data on the clients of SBART;

Identify emerging areas of need;

Identify service gaps for people with spina bifida;

Assess staffing levels and future demand;

Determine what lifestyle factors have been addressed by the SBART team;

Highlight the medical and social needs of this group.

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3. METHOD

3.1 Participants

The project sought data from two participant groups: clients with spina bifida who accessed SBART, and professional stakeholders. Each are briefly summarised in turn.

Clients with spina bifida who accessed SBART There were a total of 186 clients in the first twelve months of the SBART service. Tables 1 and 2 below summarise gender and geographic placement of the client group.

TABLE 1: SBART Client gender

TABLE 2: SBART Client geographic placement

For the purposes of tracking initial transitions compared to longer term outcomes, the client group was split in to two age groups: 18-24 years and 25 plus. The purposeful split at age 24 was based on the rationale that up to and including age 24 be treated as the adult “transition”

48 52

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Male Female

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Sex

Client gender

54% 37%

9%

Geographic placement

Metropolitan

Regional

Unknown

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period, while 25 years over be treated as adulthood. Table 3 summarises the number of clients in each group. TABLE 3: SBART Clients by age group

Professional stakeholders Two professional stakeholders contributed to the project. Joanne Brady is team leader and clinical nurse consultant (CNC) for SBART. Joanne has over 17 years of paediatric nursing experience, primarily based at Westmead Children’s Hospital. She has worked for the GMCT in a transition coordinator role. In this role she contributed to many projects to improve transition for young people with chronic illnesses in NSW. Joanne has been in the team leader role from the commencement of SBART in 2009. Dr. Carolyn West is the rehabilitation specialist for the spina bifida clinic at Westmead Children’s Hospital and the adult spina bifida clinic at Royal Prince Alfred Hospital. Dr. West has over 30 years’ experience in treating both children and adults with spina bifida. She is a member of the Spina Bifida Collaborative and has been a strong advocate over the last ten years for the development of a coordinated service for adults with spina bifida.

3.2 Data collected

Both quantitative and qualitative data contributed to this report. Quantitative data comprised client data derived from the clinical notes of the SBART team from the period August 2009 till August 2010. It was divided in to the two SBART client age groups (18 to 24 years; 25 years plus) and stored on a password protected excel spread sheet.

98 88

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18-24 25+

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Age

Clients by age group

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Collected client data included:

Demographic information;

Number of hospital admissions;

Referrals made;

Interventions received.

Qualitative data comprised:

Semi-structured interviews with the two professional stakeholders. Interviews were

audio-recorded and transcribed. Transcriptions were subject to content analysis and

major themes were derived.

SBART client case studies. Two SBART clients contributed case information on their

experiences of transition to adult services.

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4. FINDINGS

Both quantitative and qualitative data contributing to this report revealed a number of findings:

4.1 Demographic Information

Large client numbers across a broad geographic area. During the first twelve months a large number of clients, 186 in all, were referred or self-referred to the service. These clients were distributed across a large geographic area, with 37% from regional NSW and 54% spread across the Sydney metropolitan area. This large number of referrals across such a diverse geographic area suggests a significant need by the client population, as well as a challenge to the current 1.8 FTE personnel comprising the SBART service. At the time of writing this report, an additional 79 clients not previously known to paediatric services (and whose demographic data is not included as they referred after completion of data analysis), have accessed the SBART and in the upcoming year a further 44 clients will transition from the two Sydney tertiary children’s hospitals. High frequency of contact with SBART Data analysis revealed that of the 186 people accessing the SBART service in its first twelve months, there were a total of 626 contacts with either one of the two health professionals comprising the team. This represents an average of 52 contacts per month, indicating a high frequency of support needed by clients accessing the SBART service. When comparing the frequency of contact between the two age groups (18-24: 25 years plus), it would be predicted that frequency of contact would be higher for the former group, with more support required as they make the transition to adult services. Further, it may be predicted that frequency of contact should decrease with age, as the individual engages and maintains relationships with health care services. Data presented in Table 4 does indeed support the prediction of increased frequency for the 18-24 age group compared to the 25 years plus group. However it also demonstrates that the frequency of contact does not markedly decrease, and arguably is still relatively high. This data suggests that the need for support of the type offered by the SBART may go beyond the defined “transition” period and well in to adult years.

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TABLE 4: SBART Client contacts by age group

4.2 Number of hospital admissions

Hospital admission data in the first twelve months of service was of limited accuracy, attributable to challenges in tracking individual clients over time. The sub-set of reliable data demonstrated that for 21 clients there were 35 hospital admissions. Length of stay and admission purpose was not known. As a point of comparison, the Transition Care Workforce Project (2009) identified that in 2007 there were 740 inpatient admissions in NSW for young people with spina bifida aged 16-24 years, with an average length of stay of five days. Common causes for these admissions were chronic renal failure, pressure areas, sepsis, chronic respiratory failure and acute shunt dysfunction (Lister & Brodie, 2008). The details of one recent hospitalisation known to the SBART was “Mitchell’s” case study (APPENDIX B). Mitchell spent a total of thirteen weeks in hospital with a series of complications including a sacral pressure area attributed to spending six and a half hours on an emergency department bed without a pressure mattress. Because of the limited accuracy of hospital admission data, no findings can be drawn on the SBART service’s capacity to reduce hospital admission frequency or length of stay. It is proposed that a much longer data collection period, with reliable and stable data, would be required to examine this relationship.

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500

18-24 25+

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Age

Number of client contacts by age group

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4.3 Referrals made

Working as a resource team SBART referred clients to the following agencies: TABLE 5: SBART Client referrals

SBART staff reported some limitations in referring clients to appropriate services. Many services have long waiting lists and SBART clinicians were called upon to use their clinical skills. As noted at interview by one professional stakeholder:

“When our adults present it tends to be in crisis and they need immediate care, community nurses for dressings and OT’s for correct pressure care. You need to send them somewhere straight away and that is hard to find. I have often had to do the dressings myself because the wait is too long, but I am one person for the state and it is impossible. Occupational therapy, most have a waiting list of over 12 months”

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18 8 7 7 2 2

39

24

05

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Referrals

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4.4 Interventions received

SBART provided the following direct service interventions to clients.

TABLE 6: SBART Client direct interventions

Table 6 shows that the most frequent intervention was support at spina bifida clinics, with approximately 70% of the total SBART client population receiving such assistance by the 1.8 FTE SBART personnel. SBART clinicians attended these clinics across Sydney metropolitan area as well as regional areas, including Newcastle, Tamworth, Wagga Wagga, Dubbo and Coffs Harbour, sometimes on more than one occasion for an individual client. Since the commencement of SBART another two adult clinics have been launched in Camden and Concord Hospitals. The SBART service was also involved in providing interventions related to health and lifestyle, addressed through the provision of informal education to clients. The types of health and lifestyle education provided is summarised in Table 7.

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23

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SBART direct interventions

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TABLE 7: SBART clients: Types of Health and Lifestyle Education Interventions

The interventions received by clients of the SBART isolated a number of specific client support issues. Several merit particular highlighting:

a) Employment

One important issue identified for those transitioning to adult services was lack of employment. To illustrate, Table 8 summarises employment for the total 186 clients reviewed across the first twelve months of the SBART. TABLE 8: SBART client employment rates

7 7 10 15 14

20 19

0

5

10

15

20

25

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Lifestyle education

27 38

14 19 0

20

40

60

80

100

Employed Unemployed Tertiaryeducation

Unknown

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Status

SBART employment rates

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Of the total SBART population, 38% were unemployed. In comparison, a national enquiry into employment and disability found 8.3% of Australians with a disability were unemployed compared to 5% for the general population. (Australian Human Rights, Last update March 2005). The SBART data suggests that the rates of unemployment for people with spina bifida in NSW may be much higher than the national average for people with disability. Data indicated that the over 25 age group had even higher rates of unemployment (summarised in Table 9). This trend suggests that unemployment becomes more prevalent as the person with spina bifida ages. For those clients who move from tertiary education, the receipt of which would usually predict higher chances of employment, such training does not appear to guarantee employment. TABLE 9: SBART client unemployment rates by age group

The nature of the employment experience for many clients with spina bifida was summarised by one professional stakeholder as:

“Employment agencies are finding it hard to get them [people with spina bifida] jobs and when they do they don’t last very long because employers sack them. Why do employers sack them? Because they don’t understand executive functioning issues and strategies to get people doing the job properly, and that is where we can come in, with more man power we can come in and work with employers about how to keep them in work.”

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Age range

Comparison of unemployment rates

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SBART provided employment education to 20 people in the 18 – 24 age group and none to people in the 25 plus age group. A standard practice with the 18-24 year age group was for SBART personnel to complete “check in” phones calls to each client approximately every three months. These checks in did not occur for the 25 years plus group. It is possible that for the former age group such phone calls provided a preventative measure, providing the opportunity for SBART clinicians to advice before people lost their job, or recommending employment agency assistance.

b) Access to appropriate services

Data contributing to this report suggests that clients with spina bifida have difficulties in accessing appropriate services:

“In the Dubbo area; I tried 13 GPs before I could find someone that would see him”

When they were able to access services, the next challenge was finding a clinician who understood their needs:

“Doctor’s get worried about complex issues where they get out of their depth and don’t feel confident in what they are doing, so that is the idea of the resource team, to have somewhere that they can ring up and say ‘I have this problem’.”

Case Study “Jessica” who lives in a regional centre, reported “I was continually ignored” until she contacted the SBART for support. The SBART clinician directly communicated with the relevant medical team, requesting scans resulting in diagnosis of osteomyelitis that had developed in her hip bone. Left untreated, osteomyelitis can turn to septicaemia, resulting in serious health complications. This young woman, formerly ambulant and employed, is currently off work, socially isolated and may require the long term use of a wheelchair. See APPENDIX C. Executive Functioning issues Iddon (2004) found that clients with hydrocephalus, with or without spina bifida, demonstrated impairments in executive functioning. Given that 90% of people born with spina bifida also have hydrocephalus, it is possible that executive functioning challenges may also be manifest for the clients of the SBART. Qualitative data contributing to this report does suggest this. Professional stakeholders’ report significant difficulties in engaging clients with appropriate health services.

“Almost all (people with spina bifida) have some degree of executive functioning deficit that impedes getting on with life, whatever it may be, employment, relationships… and indeed, their healthcare which is our primary focus”

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Executive functioning is associated with subjective quality of life for people with spina bifida and hydrocephalus (Barf et al, 2010). Executive functioning difficulties may impede client ability to maintain wellbeing and social links. To address this, the SBART has engaged in support whereby clients can connect with each other via Facebook. This very successful effort has resulted in connection of now over 50 members. It is proposed that the demands of assisting clients with executive functioning issues should be considered in future planning and funding of SBART. Continence Transition to adulthood means that young people may face unfamiliar routines and environments, some of which may result in anxiety.

“They *person with spina bifida+ may have to use the toilet at TAFE; even that little thing may cause a great deal of difficulty. How they figure out how to do this…they may not do it at all, then they end up in trouble, either wet at work or get infections; they might just skip it rather than address the issue.”

In the adult system there will often be no nursing input and education until there is an acute issue.

“there would be quite a few of our adults with spina bifida on dialysis… different clients are all facing the same issues, they forget to catheterise”

Perhaps challenges managing continence may be associated with executive functioning issues or, with difficulties adapting to an environment where no allowances for their condition are made. The high demand for incontinence advice and assistance highlights the importance of access to the clinical nurse consultant from SBART. Ageing and spina bifida People with severe physical disabilities age earlier than the general population, and health conditions worsen with increased severity of disability (Gething et al, 1999; in Australian Health and Welfare, 2000). In support of this finding, while 9 people in the 18 to 24 year group referred to SBART for urgent occupational therapy input, this doubled to 18 in the 25 plus age group. There was also a significant increase in referrals to allied health in the latter group. It is possible that this increased need for occupational therapy intervention may be attributed to ageing.

“We will have the issues of aging, some are overweight, a lot have lots of stress and strain on the joints, upper limb problems, as they are using upper limbs for everything.”

Ageing relates not just to clients with spina bifida, but also their carers:

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“They *parents of people with spina bifida] are getting older themselves and have their own health issues and they are hopeful that other people will help them. Every family is different, the degree to which they hang in and help.” “We will get a call from community workers saying there is a young person, and the parents have died, living in a house who can’t look after themselves. What do we do? And the person usually ends up in hospital.”

Currently, clients with spina bifida are not eligible for support by Ageing Disability and Home Care (ADHC) because they do not have an intellectual disability. However, the executive functioning issues already discussed in this report suggest that for many, ongoing personal living support may be required.

“The problem is ADHC understanding that some of them have the cognitive difficulties and do need supported accommodation and do need support for the rest of their lives. Someone to oversee their health and lifestyle needs. My thoughts to ADHC would be that they need to get out there and look at the big picture and see how these adults are really struggling, getting showered in the hospital, losing legs, not having any money because they spent it in one day. They get the pension and it is gone and so they need help with all those things”

Pressure care “… most *adult spina bifida+ clinics we will have a pressure sore. They are the things that will kill them in the end. Pressure problems and skin care will be the issue. It needs a lot of input and a lot of nagging to get then to comply; it is easy (for people with spina bifida) to forget them because they don’t hurt.”

People with spina bifida are at risk of skin breakdown due to the sensory and circulatory issues of the lower limbs. Skin integrity requires vigilant care that often parents provide in childhood but can be neglected as the person moves toward adult independence. Pressure areas mean long periods of bed rest causing social isolation, decreased ability to work, and in the worst case, hospitalisation, surgery and amputation.

“The other issues are lower limb care, lymphedema, cellulitis, osteomyelitis, circulation problems, all of those things we can do a lot of prevention, when we do get an issue it takes ages to get it fixed. It is a worry that there are areas where people are losing parts of their limbs...”

To prevent pressure areas clients require access to appropriate equipment in a timely manner and education about treatment and prevention. 5. LIMITATIONS OF THIS REPORT While this report made every effort to identify issues supported by data, inevitably there were practical limitations. These included:

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The ability to keep comprehensive data while setting up a new service and ensuring

clinical service delivery.

The report findings are based upon a small sample of data, and therefore any

relationships suggested or conclusions drawn are offered tentatively.

No access to data on hospitalisations for NSW Hospitals: SBART does not have access to

data from NSW Health. Figures of hospitalisations from SBART are limited by the

accuracy of client reporting.

Limited resources to complete the evaluation: Funding the project officer after the

initial twelve months of service meant that only retrospective data could be collated,

without the opportunity at commencement of service to set up comprehensive data

collection systems. Additionally, the part time position (one day per week for three

months) meant that the capacity to undertake a comprehensive evaluation within the

allocated time frame was limited.

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7. References ACPR Group (2009). Report of the Australian Cerebral Palsy Register Birth Years 1993-2003.

Australian Human Rights (Last update March 2005). National enquiry into employment and

disability. Retrieved Feburary 4, 2011, from

http://www.hreoc.gov.au/disability_rights/employment_inquiry/papers/issues1.htm

Australian Institute of Health and Welfare (2000). Disability and ageing: Australian population

patterns and implications. Retrieved January 23, 2011, from http://www.aihw.gov.au/publications/dis/da/da.pdf

Blum, R., Garrell, D., Hodgman, C. & Slap, G. (1993). Transition from child centred to adult health care systems for adolescents with chronic health conditions. A position paper by the Society of Adolescent Medicine. Journal of Adolescent Medicine, 14(7) p. 570-6.

Bolt, J., Rawicki, B. & Donellan, S. (2002). Spina bifida taking control: Effective continence

management in spina bifida. Journal of Australian Family Physicians, 31, 65-111. Bowman, R. M., McLone, D. G., Grant, J. A., Tomita, T. & Ito, J.A. (2001). Spina bifida outcomes:

A 25 year prospective. Journal of Pediatric Neurosurgery, 34(3), 114-120. Iddon, J., Morgan, D. J. R., Loveday, C., Sahakian, B. J. & Pickard, J D. (2004). Neuropsychological

profile of young adults with spina bifida with or without hydrocephalus. Journal of Neurology, Neurosurgery & Psychiatry, 75, 1112-1118.

Lam, P., Fitzgerald, B. B., & Sawyer, S. M. (2005). Young adults in childrens hospitals: Why are

they there? The Medical Journal of Australia, 182(8), 381-384.

Lister, S. & Brodie, L. (2008). Transition care workforce project.Retrieved December 20, 2010,

from http://www.health.nsw.gov.au/resources/gmct/transition/transition_care_workforce_report_pdf.asp. Sydney: GMCT Transition.

http://www.hreoc.gov.au/disability_rights/employment_inquiry/papers/issues1.htm

http://www.aihw.gov.au/publications/dis/da/da.pdf

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APPENDIX A

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APPENDIX B: “MITCHELL” CASE STUDY

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APPENDIX C: “JESSICA” CASE STUDY

*Name has been changed to protect client confidentiality.

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