Results from a recent study have shown that 15% of Adults with Cystic Fibrosis (CF) had definitive symptoms for Attention Deficit Hyperactivity Disorder (ADHD).
While past research had shown a prevalence of anxiety and depression in adults with CF, the incidence of ADHD was described as “understudied.” (International recommendations are now to screen all CF patients for anxiety and depression.)
Goals of the new research
The core of the CF-ADHD study was to identify the prevalence of ADHD with those diagnosed with CF. And, to also demonstrate how ADHD might impact quality of life and adherence to necessary care routines for those with CF.
Cystic fibrosis (CF) is a genetic condition causing the production of thick, sticky mucus. The respiratory system - especially the lungs - is adversely affected. All body systems and organs that produce mucus are involved; the gastro-intestinal system and the pancreas are examples of this.
ADHD is categorized as a “Destructive Behavior Disorder” in the Diagnostic and Statistical Manual of the American Psychiatric Association (DSM). This well-known guide is used by licensed professionals to diagnose psychological disorders. The primary symptoms of ADHD are the inability to remain focused, the need to be constantly active, and the tendency to make hasty decisions without first thinking things through.
For a person with ADHD, he/she carries a general absence of concern for the details of life or for carrying out functional tasks such as self-care.
It is possible that ADHD is genetic; those affected often have family members with ADHD as well.
Approximately 2.5 % of American adults are diagnosed with ADHD.
In the study, 53 adults with CF were screened for ADHD.
How was data collected?
Information on symptoms was obtained via self-report. Participants completed an ADHD symptoms checklist (ASRS), a CF-questionnaire to measure the overall impact of CF on their life, and an evaluation form regarding dedication to their daily CF plan of care.
Generally, a diagnostic evaluation such as this includes a review of the person’s medical symptoms and history plus a physical exam.
When screening the person for possible ADHD, the DSM is reviewed. The self-reported information from the patient is compared to the manual’s diagnostic symptoms and its occurrence guidelines. This process confirms if the person has the necessary criteria for diagnosis of that condition.
It should be noted that only a licensed or credentialed professional, such as a psychiatrist, psychologist, medical doctor, or clinical social worker, etc., can legally make an official diagnosis of such conditions.
With the 53 CF patients sampled, 15% showed strong ADHD symptoms. These signs of a probable ADHD diagnosis were previously undetected.
Once diagnosed with ADHD, adults are treated with medications, perhaps in combination with counseling. Including immediate family members in the counseling sessions may be helpful for the client.
The use of behavior management actions such as learning ways to lessen distractions while strengthening structure and organization may prove helpful.
The need for more research
Articles and research on quality of life for adults with CF is limited and points to the need and opportunity for studies on this subject.
We are told that in the past, there wasn’t much concern about providing satisfying lifestyles for those with CF. The truth of the matter is the life expectancy for those with the condition was so low that concentration was on just simply meeting medical needs.
In those days, the prognosis was poor: Most people with CF didn’t even reach adulthood. As the life span for those with CF has lengthened, those in the medical community have come to recognize the need to assure their patients have the best possible quality of life.
In today’s world, there’s excitement as kids with CF are reaching the age of adulthood. We are now called to do what we can to make the lives of those with CF as comfortable and enjoyable as we can.
One study concerning this need involved the issue of young people with CF choosing to get a job or go to college. Outcomes showed those who were not out in the community to latch onto these opportunities showed more disease symptoms and reported less satisfaction with their general lifestyles.
Regarding the recent study to help determine the number of people with CF who are also diagnosed with ADHD, the study showed those with ADHD tendencies reflected a less satisfying quality of life in some areas but not all. The study findings included the notation that additional research is needed in this area to better clarify study outcomes.
Online research uncovers the need for daily maintenance treatments by those adults with CF. Averting critical health issues such as massive lung infections is daunting. Disease control takes time, stamina and fortitude.
Daily medication and treatments can take up to five hours out of each day for a person with CF. Strict time management skills are needed to allow for this, especially for those who hold down even a part-time job.
Cystic fibrosis and non-compliance
In another CF study which concentrated on the extensive care required just to maintain the status quo with CF, we learn that “Patients with chronic disease comply with about 50% of their treatment.”
It goes as far as saying “The complex and time-consuming regimens needed in the care of adult patients with Cystic Fibrosis encourages non-compliance with prescribed treatments.”
It models medical providers as receptive to learning about and appreciating the reasons behind the behavior. This includes knowing the extent of the non-compliance.
In knowing, and truly understanding, about these factors, the medical provider is then given the opportunity to draw up some more realistic treatment plans.
To his end, the study on treatment non-compliance invited their patients to fill out a questionnaire on the issue. The information obtained was used to calculate a compliance score. Details zeroed in on were the percentage of prescribed treatment carried out, and the attitude of the patient to each medication ordered.
Additionally, an assessment score was derived from various medical staff involved in each case for comparison to the patient’s score.
All scores related to patient characteristics, disease severity and the patient’s knowledge of cystic fibrosis.
This medical practitioner cared enough about his patients to go to these extremes to seek a workable solution.
Results showed that the most common reason for skipping the medication was forgetfulness and had nothing to do with the numerous factors the physician had worked into his research project.
ADHD and cystic fibrosis
As a wrap-up, non-compliance is universal and should be recognized as a typical behavior. And treatment protocols should be outlined while incorporating the patient’s individual requirements and lifestyle.
In non-compliance, discouragement can come into the picture as well and wreak havoc on one’s commitment to their health.
So many factors are already at play with those who have CF, but add a diagnosis such as ADHD to the picture, and the game plan can all fall apart.
For those co-diagnosed with CHF and ADHD, there is concern for their possible non-adherence to the treatment regimen. As ADHD is linked to functional impairments, to include self-care, the risk is great.
The study we’ve been speaking of has assessed this area as well. It is of interest that the data from the self-reported adherence scales did not differ between those with elevated ADHD scores and those without. Nor did tests monitoring health status differ such as the Body Mass Index or lung volume tests, etc.
It’s no doubt that compliance with your care plan is one of those things in life where you just must stand guard. Staying motivated and having a positive attitude can be the trick to carrying it all off.
The research summary of the CF-ADHD study noted the need for additional research to further investigate the impact of ADHD and its treatment on the quality of life for persons with CF, on CF self-care issues and also on health outcomes.