NSPKU part 1: outcomes of different levels of adherence to protein substitutes

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  • Hi all,

    First of all, my apologies for the delay in writing a new blog. It has been crazy busy since the NSPKU (UK PKU patient association) conference in March. I met a lot of interesting people at the conference and I have been working hard on several very interesting PKU-related research projects since!

    In my last (first) blog, I promised I would give you an update about the NSPKU conference, so here it goes:
    In 2015, I was invited by the NSPKU metabolic dietitian to give a talk about my research at the 2016 NSPKU conference. Of course, I was very honoured they had invited me and I decided I would present a few preliminary results of the survey that is currently online (see my first blog post on PKU board). My aim is to give you a short summary of the work I presented as well as some of the other presentations (that are relevant for patients worldwide, not only the UK) in a few blogs over the next weeks/months.

    For this blog I will focus on my own talk.

    As I mentioned in my previous blog - my research focusses on the dietary management and impact of PKU in adulthood.
    We all know that adhering (i.e. sticking to) the strict PKU diet and protein substitutes can be hard. So it probably comes as no surprise that various metabolic centres have reported decreased adherence to dietary recommendations when patients grow older and become more independent.

    Sticking to the PKU diet and protein substitutes is important for both physical and mental health and low adherence has been shown to lead to deficiencies in essential amino acids, vitamins and minerals (all important building blocks to the body) as well as anxiety, depression and difficulties with cognitive functions like memory or concentration.

    During the conference, I presented data of 52 adult PKU patients, who had been kind enough to participate in my study before the end of February (when I started data analysis). To date, 65 patients from all over the world have completed the survey and the NSPKU, ESPKU and NPKUV (Dutch PKU association) are all working on advertising the research in their next magazines and on their websites!

    The responses from the 52 patients showed that – in spite of following a strict low-protein diet with protein substitutes – patients who take their protein substitutes ‘best’ experience a lower overall and emotional impact of PKU, as well as fewer symptoms (such as tiredness and anxiety). Furthermore, patients with low adherence showed more issues with cognitive functioning in daily life settings (such as concentration, memory, planning & organizing and attention).

    Due to the relatively small number of responses, it is unclear at this stage whether problems with concentration, memory, planning & organizing and attention are caused by or a cause of low protein substitute adherence.

    Therefore, I’m looking for more patients both on and off diet (and anywhere in between!) to participate in my study.

    If you are an adult (18+) PKU patient and are interested in completing the survey, please contact me via psdlh@leeds.ac.uk or here on PKU-board and I will send you more information.

    If you are German, Dutch or Polish and would prefer to complete this survey in your own language, please let me know (the Dutch translation is already available and we are working on a German and Polish translation at the moment!).

    I’d like to close this blog by saying 'a big thank you' to everyone who has participated in my study to date and will be back soon with a blog on a different NSPKU conference talk!

    All the best
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Comments 3

  • agatabak -

    Great! I will drop you an email. If you wish, I can translate the survey in Spanish and spread the word among my Spanish friends.

    • psdlh -

      Great, I look forward to it :) - I will keep your kind offer in mind, thank you!!

  • Gregor Hammerschmidt -

    Very interesting. I think it's also something I was expecting when I see the chart showing the differences between men and women. Getting pregnant and having to stick to a strickt diet does have a major impact on this I assume.