Newsletter do evento em Lisboa

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PKU meetings

3rd European Phenylketonuria Group symposium 
March 25-26, 2011; Lisbon, Portugal

The 3rd European Phenylketonuria Group Symposium Advances and challenges in PKU was designed to facilitate in-depth discussion about the clinical management of patients with PKU. Over 250 participants from more than 30 countries took part.

The symposium focused on pathophysiology, diagnosis, treatment and clinical management.  International experts engaged with participants to discuss current aspects and different approaches to practice including debates about QoL and the neurological and neuropsychological consequences of PKU.

Managing the PKU patient’s journey from birth through adult life was addressed, focusing also on the changing role of the family in patient care. Systems for diagnosis and screening were considered and the differences between countries were analyzed in order to highlight the best results reached in clinical practice.

Synergies between diet and therapy were discussed and one of the key themes of the meeting was how to address lack of long-term adherence to treatment.

This was a highly interactive meeting with plenty of opportunity for delegates to connect with and put questions to the expert speakers. Questions were wide-ranging including many about how to improve clinical management of patients with PKU from a practical perspective in a clinical setting; various recommendations were proposed for ways to improve clinical management of patients with PKU.

All the experts agreed that a multidisciplinary approach is the appropriate way to combat PKU and its consequences.

During the meeting, speakers and members of the PKU Academy Editorial Board were able to record short video interviews on aspects of clinical practice and topics raised in the meeting’s lectures and oral communications; these interviews will be made available via the conference newsletter and the PKU Academy website.

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Dietitians' workshopMarch 24, 2011; Lisbon Portugal

The first Dietitians’ Workshop was held in Lisbon on March 24th 2011. The workshop was designed to facilitate in-depth discussion about the clinical management of patients with PKU, focusing especially on the different issues in PKU management, and offering guidance to support dieticians in attaining optimal treatment outcomes in their PKU patients.

In addressing the role of diet in PKU management, international experts in dietetics and nutrition gave plenary presentations and ran interactive workshops. Participants took part in discussions about the advantages and limits of diet in treatment and prevention of adverse neurological effects in PKU patients.

Practical solutions to tailoring approaches to different patient groups and ages were reviewed. Experiences from several countries were shared and the audience participated actively with the help of an electronic voting system to demonstrate their views on appropriate approaches to PKU management.

Presentations considered the success of dietary treatment, and the challenges of delivering it in different ages and cultures. They concluded that many factors influence dietary compliance and a multidisciplinary approach is necessary to improve adherence to therapy; drug therapy may also play a crucial role in attainment of treatment goals.    

All participants agreed that follow-up of adolescents and adults with PKU is crucial and, for women, managing reproductive health is a prime goal in order to prevent maternal PKU syndrome and adverse fetal effects. Delegates agreed that very strict blood Phe control within low target ranges is essential before conception as well as throughout pregnancy. Diet, although successful, can be difficult to follow over a lifetime and treatments (mono or combined) should be considered an essential milestone in PKU management.

Workshop sessions covered a range of topics including treatment barriers arising from different cultures, languages, socioeconomic differences and the needs of immigrant populations were discussed.  Proposed solutions included provision of materials in appropriate languages, utilization of current trends in social media and on-line services, and support workers to care for different patient groups.

Maintaining dietary control in adult patients in the long term can be supported by a number of approaches including:

- Providing practical help such as cookery tips
- Offering home visits from healthcare professionals to improve adherence to diet and therapy
- Using the most up-to-date communication methods such as Facebook and web sites

Modern technology can also be very valuable not only to provide direct, web-based support to patients but also to support healthcare professionals' continuing education activities through websites such as the PKU Academy.