Diabetes in cystic fibrosis on the rise
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As treatment for cystic fibrosis improves and patients live longer, more CF-related diabetes is being diagnosed. Helen
Cunliffe, a pharmacist at St James's University Hospital, Leeds, reports from a meeting of CF pharmacists
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The annual meeting of the Cystic
Fibrosis Pharmacist Group took place in Manchester on 24 November
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Cystic Fibrosis Pharmacist Group
The Cystic Fibrosis Pharmacist Group (CFPG) is open to all pharmacists
with an interest in cystic fibrosis.
The group holds an annual meeting and has an e-mail discussion
forum, which is a useful tool for pharmacists working with CF patients
to support each other.
Membership is free and information can be obtained by contacting
Helen Cunliffe (e-mail Helen.cunliffe@leedsth.nhs.uk). |
The severity and increasing incidence of cystic fibrosis-related diabetes
(CFRD) is giving cause for concern, said Rachel Rowe, consultant diabetologist,
Wythenshawe Hospital, Manchester. CFRD was rare until the 1980s but the
increased survival of patients with CF means that more patients are being
diagnosed with CFRD. The mean age a CF patient with diabetes is approximately
18–20 years. Mortality increases six-fold, because the diabetes
has an adverse affect on pulmonary function. At least 90 per cent of
CF patients aged 40 will have diabetes and the increasing survival of
patients means that there will be more patients with CF-related diabetes
and for a greater number of years then before. The pharmacist can expect
to see more diabetes-related complications.
Patients are screened for diabetes from the age of 12 years. Diagnosis
of CFRD is more difficult than type 1 diabetes. The insulin resistance
changes a lot in CF and patients “jump in and out” of diabetes,
requiring dramatic alterations in drug treatment. Patients lose beta
and alpha cells (which make glucagon) resulting in profound hypoglycaemic
attacks in untreated patients. Dr Rowe reported that subcutaneous glucose
sensors were useful in understanding the problems patients were having
with diabetes control and determining appropriate insulin therapy. Pharmacists
should also be aware of drugs used in the treatment of other CF conditions
which may affect the patient’s diabetes.
Adolescent transition
Caroline Harris, clinical psychologist, Leeds Adult Cystic Fibrosis
Unit, talked about her experiences with patients with CF and paediatric
liver
disease. She pointed out that adolescence is associated with an increase
in difficulties in treatment adherence for chronic disease and that
there are reports of it being a “distressing” period. She
said that the national service framework for children and young persons
recognises that transition should be a guided, educational and therapeutic
process. Dr Harris said that transition can be problematic for not
only the child but also the parent, and the CF team or individual professionals
working with the family.
She emphasised the importance of talking about transition of care to
the child and family from an early age so that the family considered
the move from a paediatric CF unit to the adult CF unit to be a normal
progression, which in turn reduces anxiety at the time of transfer. The
transfer of care should be made an easy as possible by holding a CF transition
clinic with both paediatric and adult CF staff attending. She felt it
was inappropriate for an adult to be treated within a paediatric clinic
because the paediatric team wanted to “hold on” to their
patient.
Dr Harris described how developing a unique identity is the major psychological
task of young adulthood and to achieve this goal, the young person must
negotiate an autonomous relationship from their parents, define themselves
as an adult, and construe themselves as sexually mature in a physical
and social sense. Whereas normal adolescents start to seek more support
from their friends than their family, illness in adolescence has the
opposite effect in that patients start to rely more on family and relatives,
parental anxieties come into play and there are difficulties in “letting
go”. Ill health confuses the developing person’s sense of
self and future, and young people with CF may become more aware of death.
Adherence to drug treatment is a common problem and Dr Harris suggested
that less coercion and more collaboration was effective, for example
by developing a relationship with patients, being prepared to compromise
where possible and setting small goals. It is also necessary to accept
that levels of adherence will vary from time to time and recognise that
not sticking to regimens is normal adolescent behaviour. Patients’ choices
should be respected. Antibiotic treatment
Hospital treatment with intravenous antibiotics is more effective but
also more expensive than home treatment. This was the conclusion of
a study by Judith Thornton, pharmacist and honorary research fellow
at the University of Manchester, who presented the results of her surveys,
which have been published (Thorax 2004;59:242–6, and Journal
of Cystic Fibrosis in press). Home intravenous antibiotic therapy is
increasingly popular with patients with cystic fibrosis and although
there is published evidence looking at clinical outcome of patients
there were no published economic evaluations.
The study compared home and hospital treatment at the Manchester Adult
CF Unit, in 2000–01, as a one-year retrospective study. One hundred
and sixteen patients were eligible, with 454 courses of intravenous antibiotics
given.
Patients on home treatment prepare and administer antibiotics themselves.
Clinical outcome was judged on FEV1, FVC and body weight.
At one year the study demonstrated that the clinical outcome after one
course of treatment in hospital is better than after home treatment.
After one year, clinical outcome is better in patients who receive most
of their treatment in hospital. Factors which may have had impact on
the results included lack of
supervision and monitoring of physiotherapy, diet and adherence at home.
The second part of the study considered a cost comparison between home
and hospital treatment. Hospital treatment was significantly more expensive
than home treatment at £22,609 vs £13,525.
The study was further extended as an economic evaluation to calculate
the incremental cost-effectiveness ratio (ICER). The results, analysed
against a decline in FEV1 of less than or equal to 2 per cent from baseline
average over one year, showed that hospital treatment was significantly
more effective than home treatment but at a price — around £70,000.
Other pharmacists suggested that if a home care company was used to supply
the antibiotics the outcome may have been different as adherence may
be better and the cost differential would be less.
Dr Thornton suggested that further studies should look at quality of
life comparisons with home and hospital treatment. Oxygen therapy
Mary Dodd, a physiotherapist at Wythenshawe Hospital spoke about the
oxygen therapy. She highlighted the change in home oxygen service
in England and Wales in early 2006.
Although the new contract is designed to relieve current problems
with the oxygen supply, her concerns were that, owing to budget restraints,
patients would be given concentrators routinely, which she believed
was
not appropriate for all patients. She stressed the need for the form
to be completed fully to prevent patients from being given a conserving
device and a concentrator automatically, when it was not intended. |