The Allograft Information Exchange (ALLINEX)
Penny Wright, University of Leeds
Email: E.P.Wright@leeds.ac.uk
Summary
The objective of this research proposal has been to develop an intervention for follow up of
survivors of allogeneic haemopoietic stem cell transplants (HSCT) using the internet,
referred to as the allograft information exchange (ALLINEX). In this proposal use of the
internet as a two-way information exchange between patients and the tertiary HSCT team
has been developed and is in the process of being evaluated. The project is in four phases:
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Phase one: 0-18 months (completed): To investigate standard supportive care for adults
between 100 days and 18 months post-HSCT.
Phase two: 15-24 months (completed): Development of an easy to access secure
website for allogeneic HSCT patients. Content and layout developed and reviewed by
patients, carers and health care professionals working with HSCT patients.
Phase three: 25-33 months (from November 2011):
A randomised pilot study of
standard care versus standard care plus access to the ALLINEX website.
Phase four: 34-36 months: naturalistic evaluation.
Background
There has been a considerable increase in allogeneic HSCT for blood and bone marrow
disorders over the last 20 years with improving survival rates. Survival does not come
without burden, with a growing number experiencing chronic Graft versus Host Disease
(GvHD) which carries increased mortality and morbidity. Quality of life (QoL) is compromised
around the time of transplant and, although it gradually improves, there appears to be a
deficit in comparison to patients undergoing other treatments and to non-cancer patients.
Full recovery of patients (defined as no impairment in physical and work limitations,
depression or distress) was reported by 19% of patients (autologous and allogeneic
transplants) at one year and 49% at three years. A quarter of allogeneic HSCT patients
have registered financial problems in the first two years following transplant and return to
fulltime employment is slow. Partners of HSCT patients also experience psychosocial
hardship.
Although there has been little research concerning psychosocial services accessed by adults
who have undergone HSCT, one study found half of the participants with severe distress
had used mental health services. Barriers to access included lack of knowledge of available
services and emotional barriers (embarrassment and discomfort). In earlier work undertaken
by the Leeds research group, cancer patients reported they liked to sort out their own
difficulties where possible, provided good information was available and only access
specialist help when problems were severe. Use of the internet in the UK is 92% for people
under the age of 65 years. As most HSCT patients are under 65 years, using the internet to
deliver supportive care may be a realistic option. A custom-built website has been developed
which incorporates reliable information and signposts to other sound sources of information.
It has the facility for patients to contact their HSCT team and chat to other patients.
Findings
Phase one
A study was undertaken to examine the use of information and supportive care services in a
group of allogeneic HSCT patients in Leeds between 100 days and 18 months posttransplant. Of the 20 patients recruited, 50% had high levels of psychological distress and
30% high levels of social distress. Examination of the clinical notes revealed poor
documentation of recommended psychosocial assessments. Use of hospital services over
this period was not extensive. Nine patients had seen a clinical nurse specialist during this
period. Five patients had contact with psychology. Support from Professionals Allied to
Medicine (PAMS) during this period was low. Almost all patients had seen their GP post
transplant (18/20), with the practice nurse also involved with half of the participants
(immunisation/sick notes). Other community services were accessed rarely.
A service evaluation was undertaken of psychosocial supportive care in three HSCT centres:
Leeds, Newcastle and Sheffield. A total of 84 members of staff contributed including doctors,
nurses, PAMS, social workers, psychologists and chaplains. Findings show that in two out
of the three centres patients did not have access to a psychologist and that some other
services such as dietetics were limited due to staff shortages. Most psychosocial input was
reported as being reactive to perceived patient need rather than being available to all which
may be unhelpful for those patients who do not know what services are available or do not
feel comfortable asking for assistance.
Phase two
A website has been built incorporating information from a wide range of health and social
care professionals many of whom participated in the service evaluation. Beta testing of the
website was carried out in September 2011 with patients and staff. Changes were made
iteratively.
Phase three
A randomised pilot study of standard care versus standard care plus access to the ALLINEX
website started at the end of 2011. Patients were stratified into those with GvHD and those
without GvHD. 52 patients were consented and 45 complete sets of data have been
collected. Analysis of this data is imminent.
Phase four
All Leeds HSCT patients including those pre-transplant will be given access to the ALLINEX
website. They will be asked to complete an on-line feedback questionnaire and activity on
the website will be tracked.
The study concludes in July 2013.
Why is this work important?
The research builds on the informatics project commissioned by Macmillan Cancer Support
on ‘Survivors of Adult Cancer’. If successfully developed, the website would be made
available to the HSCT team in Leeds. It may lead to real benefits for patients and staff with
potential for extension to other HSCT centres, rare diseases or treatments. It could also be
used in conjunction with an expert patient programme.