In Children With CF, Parental Depression Lowers Treatment Adherence

In Children With CF, Parental Depression Lowers Treatment Adherence

A recent study published in the journal Pediatrics showed that depression in parents of children with cystic fibrosis (CF) negatively impacts treatment adherence in children taking enzyme supplements. The findings point to the possibility of increasing adherence rates by identifying and treating parental depression.

Studies showed that good nutrition and a healthy weight is important for reducing ill health and increasing lung function in patients with CF. They also leads to better survival.

Children with CF need more energy than healthy children, and the Cystic Fibrosis Foundation (CFF) has provided guidelines that focus on nutrition in childhood, stating that children should eat at least three nutritious meals and three snacks every day. Children who have pancreatic insufficiency also need to take enzyme supplements with each meal and snack. But research found that adherence to these recommendations is low: Just 16 to 28 percent of parents report they stick to the dietary recommendations and 27-46 percent adhere to the enzyme treatment.

There was an ongoing theory that high rates of depression in parents of children with CF would negatively influence treatment adherence, but few studies have investigated the presumed connection.

The new research examined whether parental depressive symptoms could predict adherence to enzyme treatment and whether that impact also affected short-term health outcomes. The study measured adherence during a three-month period in 83 CF children, and the rates of depressive symptoms in parents.

The team observed that 30 percent of the parents had clinical depression, and another 18 percent suffered moderate depressive symptoms. Adherence was found to be higher while children were at school compared to home, and was also higher in toddlers compared to school-age children.

While adherence to enzyme treatment was only 49 percent in the whole group, parental depression was seen to negatively impact adherence. Parents with mild to clinically significant depressive symptoms had children who took enzyme supplements 5.2 fewer times compared to children of non-depressed parents. Moreover, lower adherence was associated with lower weight gain, also affected by depression.

Recently developed international guidelines on mental health in CF recommends annually screening parents of children with cystic fibrosis for symptoms of depression and anxiety. This new study clearly shows that treatment of parental depression may improve treatment adherence and the overall health of children suffering from CF.

The study is titled Parental Depression and Pancreatic Enzymes Adherence in Children With Cystic Fibrosis, and was authored by David H. Barker from the Rhode Island Hospital and Alexandra L. Quittner from the University of Miami.


  1. Deborah Bye says:

    As a parent of a CF adult i would just like to say this is the biggest load of bull shit i have ever read.
    If your child has an infection do you not make sure they have the medication they need ? if they have a cold ? if they have a virus? or many other things a child has to indure in childhood !!!!
    Do parents not do everything in there power to keep the child healthy?
    A child with cystic fibrosis is on a whole other level!!!
    A life threatening disease!!
    your studys say that we care less for our children and dont make sure they have all the medication they need because the disease is life threatening????
    In my case its the health care that have let her down not her upbringing

    • Megan says:

      After 17 years of marriage to my best friend, we decided to have a child of our own. Unfortunately our son was born with cf. My husband had a sister who passed away from this disease 30 years prior. When we received his diagnosis, my husband dropped into such a depressed state that he couldn’t look at our son without crying. For him, giving treatments and medicine is an admission that something is terribly wrong, and something he can’t admit to himself. He doesn’t love our son any less than I do but emotionally he is incapable of administering the necessary treatments. Obviously that is not a concern for you. However you should consider that some people do not have the same fortitude you do.

  2. Bonnie says:

    I think everyone has their own experience with having a child with CF and I think many suffer from depression. I was a complete helicopter mom from the time my son was diagnosed until he was 18. It seemed like all day long I was checking to make sure he took his pills, asking about his treatments, monitoring everything. He rarely missed a dose or a treatment. When he turned 18 he started accusing my of nagging him..his FEV1 (despite all my efforts) in the low 50’s. He kept telling me he was an adult. My depression really started when I had to start letting go of my responsibilities and giving it up to him. When he turned 19 I gave him a month of “doing it all on his own”. He skipped several meds, some the entire month. I even knew he didn’t do them because I had seen that his the amount of vials of his pulmozyme were exactly the same as the beginning of the month. He lied to my face for an entire month. My heart was broken because we had always been so close. In a month his FEV1 went from 51% to 41%. It was awful. I was so mad that in one month he would do this to himself…and mad at myself for “letting” him hurt himself. I felt like a failure because for his whole life I did everything for him, never letting him take any responsibility. I felt like he had enough to deal with HAVING CF, the best I could do for him was to make sure he had all 16 meds always ordered and fully stocked, reminding him throughout the day. I don’t know how I could have changed things. He is still 19 and just started college. I am still constantly reminding, and he is still constantly forgetting..I have given some of his responsibility to him. He wants to move out in a year. I am terrified that when he does, this will be devastating to his health. I think about this disease nearly all of my waking hours.

  3. Kyle says:

    I think that this study should be reconducted and focused on the truly time consuming aspects of managing CF care.
    I’m a single mother of aCF child, I have also struggled with depressive mood disorders since I was a child.
    My daughter is incredibly healthy and my greatest blessing; despite her condition.

    It is not easy, on any level.

    I also believe there are factors greater than mood disorders that alter a caregivers disposition.

    I am surprised to learn patents have such issues dispensing enzymes… I truly believe that attacking these people is only going to further alienate them and in the long run that will be worse for the children.

    Every outlet for support reminds us how we must detach and alienate. To be confronted with judgmental bigotry and disdain, that helps no one.

  4. Shannon Johnston says:

    Ok. Everybody calm down. This study is good but needs to be taken with a grain of salt. Lets face it, it is common sense that CF causes all kinds of depression, anxiety, worry etc. in both the child and the parents. And we don’t really need a scientific study to tell us that of course if either party is feeling this way, it will be difficult to get treatments done and remember to take your pills etc. I am a 37 yr old with CF and I know that when I have other things going on in my life, like moving out, finding work, or even poor relationships, that yes I loose a bit of focus on taking care of my health and even loose motivation to do so. It is just normal human behaviour, and part of growing up. I find it interesting that this study chose to focus on taking enzymes, rather than chest physio, cause for me that is the most difficult treatment to stay up with when I am feeling down. Also the study isn’t perfect if you see that it says the best adherence was at school (school age kids), and with toddlers (non-school aged kids). So you see, it is kinda wonky results, not an exact science by any means. Taking pills when you eat is not a normal thing, and I certainly still don’t always remember, but for children under 13 – of course they are going to need help remembering. Bottom line is the best thing is that kids with CF are able to eat as much as they can, as nutritious as possible and remember to take their enzymes so that they get as much as possible out of the food. This can be explained to them at an early age, which will help them remember and develop good habits. And at any stage of life, if either the patent or certainly the parents have enough worry and anxiety and depression that it interferes with their own lives or the lives of their child, then they should seek some mental health support. For sure. Hope this has helped.

  5. Helen Mc Manus says:

    My 27 year old son has just moved out. I was worried if he could cope but he has so far. His weight has not gone down because he is cooking at all hours of the night, but I am not going to knock it because, he seems to be doing ok, he seems to be keeping up with the physo. however he is incredible dirty. I am at him constant, I don’t want to be negative all the time, but its driving me silly. also he is a lone wolf and does not see anybody all day I’m afraid of him getting like a hermit

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