Whether you call it compliance, adherence or some other politically correct term, maintaining a well-controlled PKU diet can be just plain hard! Some might think that as you get older and the longer you’ve been living with PKU, then the easier it gets to stick with it. It’s quite the contrary though. Instead, there are challenges at every stage of a PKU patient’s life…everything from infancy and adolescence, to adulthood and maternal PKU.
Source: World Health Organization, 2003
Much research has been conducted to examine some of the factors that impact a person’s adherence to the PKU diet. In fact, the World Health Organization recognizes five dimensions to medical adherence: social/economic factors, provider-patient/health care system factors, condition-related factors, therapy-related factors, and patient-related factors. Another health organization, the National Institutes of Health, took a closer look at how some of these dimensions applied to the treatment of PKU:
- Complexity of the treatment – requiring regular blood samples; daily diet records; maintenance of a highly restrictive diet consisting of a medical food, special low protein foods, and a strict vegetarian diet; and visiting a PKU clinic several times a year.
- Palatability – having to do with whether the medical food tastes good, has an appealing texture, and smells appetizing.
- Accessibility – specifically, barriers to insurance coverage and inability to cover medical costs.
- Portability – dealing with the challenges in eating low-protein when at school or work, when traveling on vacation, or any other time you find yourself away from home.
- Peer pressure – mainly dealing with adolescent patients who are seeking more independence from their parents and looking for acceptance among their peers.
- Family factors – related to the education level of the PKU patient’s parents and the willingness of extended family to support the PKU diet.
Honestly, entire blog posts could be devoted to each of these, but there’s something to be said for looking at these barriers as a whole. The reality of living with PKU is that patients must live with the combined burden of each of these factors – not to mention the chronic, no-cure status of the genetic disorder – all of which can just wear you out!
There is some good news though. We’ve all experienced our own trials and tribulations, but more than likely, we’ve also had our happy endings. The PKU community consists of a strong network of individuals who have adapted when necessary, learned to innovate when the situation demanded it, and most importantly, shared their experiences with others who might also benefit from their lessons learned.
For example, here are just a few tips for adhering to the PKU diet, all of which were shared among attendees at a recent PKU cooking workshop in Chattanooga, TN:
- Parents should acknowledge any frustration their PKU child might express about being on diet, but they should also realize that “it is what it is.” Parents who say they feel bad or guilty that their child has diet restrictions will only enable adherence issues.
- Recognize that we shouldn’t just treat the diet, but we should also address the emotional side that comes with PKU.
- For fitting in at school, parents can arrange introductory PKU meetings with their child’s teachers or cafeteria workers; send Rubbermaid tubs with PKU friendly snacks for when other students bring in high-protein birthday treats to share with the class; and role play with your child so he/she becomes comfortable with answering questions about PKU.
- For fitting in at work, pack your lunch and several low-protein snacks. If a group goes out for lunch, consider eating before they go or take your lunch with you to the restaurant. Many restaurants have low-protein items you can order from the menu. Be sure to surround yourself with friends who know about PKU – you might be surprised to see them start explaining PKU for you when others ask. And believe it or not, role playing can also work with adult PKU patients.
Certainly, these are all great suggestions, but I’m willing to bet you also have a tip or piece of advice worth sharing. If so, please tell me about it in the comments field below!
–NM
