"There has never been more hope for CF patients", interview with Dr. Alistar Duff

"There has never been more hope for CF patients", interview with Dr. Alistar Duff.

February 7, 2014

Dr. Alistar Duff is a psychologist who has worked with Cystic Fibrosisi patients and their families for almost 20 years. During this interview he told WikiCF how thanks to the increase of life expectancy for CF patients, in the UK there are now more adults than children with CF and care specialists need to prepare them for the full opportunities and challenges of adulthood. 

How did you get involved in CF care?

In 1993, while I was still a Master’s Degree student in Psychology I started exploring Cystic Fibrosis and how it impacted patients and their families.  I became really interested in the condition and how people live with it.  Then, in 1995 I started working with CF patients at the Regional Paediatric CF Centre in Leeds and I have been here ever since. I am also involved with children, teenagers and parents of other respiratory diseases such as severe Asthma.  There are currently approximately 250 CF patients in our unit.

What is your role in the multi disciplinary team approach? 

I am part of an interdisciplinary group of doctors, nurses, dietitians, social workers and pharmacists. For some issues I sometimes work with doctors. For example, when there are difficult decisions to discuss with patients about procedures.  As a psychologist you don't only work with families and patients but with the whole team. 

As CF life expectancy increases how does this affect your relationship with your patients?

Over the past 19 years, more and more children with CF are staying well into adulthood. 

The change from childhood to adolescence is one of the most difficult to navigate through when you have Cystic Fibrosis (or a child with CF). Therefore, our paediatrics team’s response is to prioritise adolescent groups and prepare them for adult life. Twenty years ago this did not happen, but today, thanks to the increase in life expectancy, it does. We need to prepare children and teenagers to take full advantage of adulthood - go to college, get married - prepare for a normal life. 

So the approach is very different depending on the age group. For example, younger children don't like needles, so we need to find solutions for this. We also need to focus on nutrition as a really important aspect as well as to adherence to treatment. As they get older, we find children who don't want to be different from their friends, so they stop taking their medications. 

When children get older they have to become more responsible for their own treatment, so we move from parent-guided treatment to adolescent-guided treatment.  Of course mistakes are made in the process. When they start going to high school they become more independent with their treatment as well, and so we try to see the children without their parents to build up their confidence. Transition from childhood to adulthood for those with CF is a process in which the individual has to also take more responsibility for their treatment.

Regarding parents, anxiety and depression is always a main issue. It is very difficult for parents to think that they could lose their child even with improved life expectancy rates.  Parents will always worry about their children.

What are the psychosocial aspects of CF care?  Is there a difference with other disease areas? Is CF somehow special?

One of the biggest things that makes CF different is the amount of treatment that people need to take in order to stay well. From a very young age they take a lot of medication to prevent pathology.  The older they get, the more treatments they need. As a teenager or young adult you might need 2-3 hours a day to stay well.

As CF patients seem well to the rest of the world, people don't realise how hard they have to work.

How do/can you enhance the quality of life of a patient with CF through psychosocial care? 

It is really important that patients have a good quality of life; that children and adolescents don’t feel different from their peers and develop psychologically as teenagers, that they build a sense of adulthood, and independence.  However, between the ages of 12 and 16 years, lung function can drop severely and this could be the time when patients require more treatment.

For parents it is extremely important that they meet other parents so they don’t feel so alone. We try to help parents get involved in support groups so they help each other deal with the anxiety of having a child with CF. 

You spoke about this topic in Serbia. What message did you want to get across (as the difference between psychosocial care is probably different between east and western Europe).

As a psychologist it was very difficult to hear parents talk about their distress and trauma of not being able to access western European and North American standards of care. Some of these issues remind me of the same ones parents had in the early nineties, when they thought children would die as young adults.

My message to European associations and patient groups would be to support and lobby for greater equality of access in both eastern and western Europe. They are missing so much. Sometimes they don’t have access to a specialist physiotherapist, or dietitian and this support is key.

What is the CF community missing in order to improve quality of life (besides a medicine that can cure the disease).

In western Europe access to psychological therapy is very patchy and it just depends on where you go to. What we have tried to do in the soon-to-be-published ECFS Standards of Care is create benchmarks for health centers to aspire to and hope that in the next few years there will be more equitable access to psychological therapies. 

What message/key take away would you like to tell readers?

For people living with CF today there has never been more hope that the treatments on the horizon will further increase life span and quality life. Hope has never been so high. The job in paediatrics has changed into helping children with the disease transition into adulthood. Our job is to prepare children for the opportunities for the future just like other children. The whole CF medical community is very excited about the prospect of being able to treat CF depending on the genetic mutation class, and for some people this has already made a tremendous difference.  There is real hope for that more people with of all ages, will soon experience the same benefits.

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