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Perspective interview - Laurie Bernstein

Perspective interview - Laurie Bernstein

PKU Academy Newsletter: Fourth Issue Feature interview with Prof Laurie Bernstein

Laurie Bernstein Talks About the Need for Better Education To Improve Adherence

Laurie Bernstein, Associate Professor in the Pediatrics Department and Director of the IMD Nutrition Department at the Children's Hospital, Aurora, Colorado (USA), contributed to the Dietitians’ Workshop and EPG Symposium in Rome on 22 March 2012 with sessions on ‘Education and motivation of patients: what works in PKU’ and ‘How to improve adherence to PKU treatment’.

While some have struggled to use the Internet and social media effectively in order to support patients, Prof Bernstein and the team at IMD in Colorado have not hesitated to exploit the opportunities these offer – as a quick search of the Internet will show, with the many videos, webcasts or online presentations listed, in which she has appeared or helped create.

However, her work isn’t limited to the digital domain, and she remains passionate about the need to support patients face-to-face and enable them to participate in ‘live’ learning and networking events in the real world.

We talked to Prof Bernstein at the Dietitians’ Workshop and asked what the challenges are in educating PKU patients and their families.

‘There are many times when we, the professionals, only see the clinical perspective’ she said. ‘We know what we want the outcome to be and we have this idea of how it should work, so we make a recommendation and then we go back to our office and send the family home.

‘But we need to understand how our recommendations impact their lives.’

Getting off to the right start

‘For infants, you really need to get the family involved, you need to educate the parents but this is not easy. You come into their life, you tell them that their child has a metabolic disorder and that you, a complete stranger to them, are now going to be an important part of their life. I think for most families, they suddenly feel like they are in a fishbowl and all of a sudden everything they say and do is being monitored and judged.

‘We need to make sure we have a strong foundation and that people have what we call in the USA a “buy-in”, that they’re really on board because it really makes sense. I wouldn’t want to do anything in my life without understanding why I’m doing it, nor would I ask my patients to do that.’

Grandma knows best?

Prof Bernstein added that in order to provide truly individualized care, the clinician must understand how a family is going to react to the advice. Cultural issues and traditions were important, particularly when these conflicted with clinical advice.

‘If we have a Hispanic family from Colorado and we advise them that during the first year of life the only fluid their baby should take in is the metabolic formula and we say “No water!” this can cause problems because it conflicts with their tradition. The parents may agree to follow our advice when they are in the clinic but, when they go home and tell their family “We’re not allowed to give our baby extra water”, Grandma says “What do you mean no extra water? That’s what we do. That’s what that baby needs.” The parents are unwilling or unable to tell us about the conflict that our guidance has caused so they keep it to themselves.

‘The parents may well follow the instructions, but Grandma is a different matter’ Prof Bernstein said. ‘If she’s sneaking water to the infant, it will affect the formula intake. If we see inadequate weight gain or high Phe levels, and are assured by the parents that our instructions have been followed, we become concerned that there is something that we have missed.

‘In cases like this I think we have to be prepared to balance short-term compliance against the risk to long-term compliance posed by a breakdown in the relationship with the family.’

Throw out the guidance?

‘I’m not saying we should throw out the guidance, but we have to remember that every family is different. Sometimes I think that in the USA we are too strict and I think that in some countries it goes too far the other way. International meetings like this one are valuable because they allow us to consider these questions and compare practice. These meetings teach us to step outside our comfort zones, to look at how other people do things.

‘There are many factors that play a vital part in long-term compliance. The transfer of responsibility for adherence to diet from parents to their children is crucial. This cannot be done in a single step, it’s a process that has to happen alongside the child’s development. In our clinic, children as young as 3 years old start to identify “Yes” and “No” foods.

‘I think it’s important to share the tools we create to help educate patients and their families. I’m always very grateful when I can incorporate somebody else’s expertise and make it specific for my families, and I encourage others to use what we have created.

‘Our teaching modules, games and an anticipatory guidance book called “Eat Right Stay Bright” can all be accessed or ordered online.’

Bringing in the professionals

Prof Bernstein said ‘When we asked our patients what the biggest “roadblocks” to adherence were, we kept hearing “Difficulty in preparing meals”, “There’s not enough variety” or “Low-protein foods are too expensive”. Our answer to this was to create a program called Network PKU. Originally a video offering practical advice and featuring PKU patients and their families, Network PKU grew into a conference run at a culinary school, featuring professional chefs. The first conference was held over a weekend in 2004 and was such a success that repeat events were organized in 2006, 2009 and 2011. The next one will be in 2013.

She told us ‘Families come to the conferences and they learn how to cook foods that are naturally low-Phe but not necessarily specially formulated low-protein foods. They learn from professional chefs how to create meals that are easy, fast and accessible.

‘All of a sudden our families are like “Okay, this is difficult, but maybe it’s manageable.” The events also allow patients and families from all over to meet each other. They can make new connections and by exchanging phone numbers and emails, they can stay connected.

Laurie Bernstein

Associate Professor in the Pediatrics Department and Director of the IMD Nutrition Department
Children's Hospital
Aurora (CO), United States