Why Do Some Families Struggle to Manage Pediatric Chronic Illnesses?

The rate of chronic illness in children and adolescents has been steadily increasing over the last five decades. In 1960, only 1.8 percent of children were diagnosed with a chronic illness. Today, over 25 percent of children have a chronic illness.^1,2

Pediatric Chronic Illness Prevalence in the Inland Empire

Closer to home in California, more than 38 percent of individuals have at least one chronic condition³, resulting in over 98 billion dollars in health care costs for the six most prevalent chronic illnesses.⁴ Additionally, the Inland Empire is ranked as one of the worst areas in California for health and wellbeing.

Did you know? San Bernardino County’s health is ranked

42 out of the 57 counties in California.⁵

On a more optimistic note, medical innovations have grown just as quickly. One could even argue that the increase in chronic illness is mostly due to medical advancements and the ability to diagnose sooner and more accurately. Although a very relevant argument, it does not take away from the fact that chronic illnesses are pervasive in our community.

Additionally, while medical treatments continue to grow in promise and effectiveness, somewhere between 50 to 75 percent of chronically ill children struggle with their treatment regimen.⁶ A large percentage of these children also have a preventable diminished Health Related Quality of Life (HRQL) in their adult years due to treatment regimen mismanagement by the family or child.^7,8

The Relationship between Stress and Treatment of Pediatric Chronic Illnesses

Studies suggest that stress is a major cause of children not properly following their treatment protocols.⁹ The biological stress responses associated with the illness and its management have direct biological effects on the disease progress through pathways of toxic chemicals.¹⁰ These biological effects go on to reduce cognitive functioning, thereby limiting the child and family’s ability to follow complex treatment regimens.⁹

Because of this physiological stress, cognitive and mental health processes are linked to the child’s ability to self-manage their treatment regimen and ultimately achieve a better, later life HRQL.^1,11,12

A Loma Linda University study involving chronically ill pediatric patients shows a causal link between stress, cognitive abilities and treatment adherence.¹³ In this study, an intervention is used to reduce the child’s physical stress. When stress is reduced, the child’s cognitive functioning (including IQ) improved. After this improvement, the child’s adherence to their treatment protocol increased. This leads us to conclude that the physiological effect of stress produces a reduction in cognitive abilities. Given that all chronic conditions come with complex treatment protocols, stress may reduce the patient’s ability to keep up with the complexities of their treatment.

Sources of Stress for Children with Chronic Illnesses

Now, we might assume that the diagnosis and the uncertainty of the disease are causing this stress. That makes sense as the new reality of a revealed diagnosis would be stressful. But in reality, it doesn’t seem like that’s the major source of the stress.

For example, in a recent study by Rodriguez and colleagues¹⁴, 106 children diagnosed with cancer were asked to report on a multitude of different sources of stressors. Children in the study reported much more stress from the so-called, “role-related” stress, rather than disease specific stress. More specifically, the children felt more stress from parent-child dynamics, missing school, feeling different form peers, etc. These psychosocial factors seem to have a profound impact on the family’s ability to manage their chronic illness treatment.

Better Managing Pediatric Chronic Illnesses

Many psychosocial interventions, most commonly Cognitive Behavioral Therapy (CBT) peer group approaches, have popped up in the last 10 years to address these issues of stress. Recent research looking at CBT peer groups suggests a few important points.^15,16

• First, there is a positive benefit to a peer based psychosocial intervention. Most studies show positive improvements in stress, coping and adherence after CBT interventions.
• Second, the effects of CBT intervention are more significant and long lasting for children and adolescents when parents are directly involved in the intervention. In fact, if parents are not present for the interventions, its positive effects tend to fall off immediately after the child graduates from the program.

Accordingly, it would seem like a family-based intervention would offer the best support for families when there are challenges or stressors apparent in relationship to the management of the chronic illness.

The Master Each New Direction (MEND) Program

One such intervention has been available since 2010 at the Loma Linda University Behavioral Medicine Center. The Master Each New Direction, or MEND, program offers a family-based psychosocial support for children and adults with a chronic illness as well as their families.

Pilot studies^13,17 from this program show that MEND improves the HRQL of children and their family members. This program reduces the number of missed school days for the child by 80 percent and similarly missed days of work for the parents by the same amount. Also, the program shows positive and clinically significant improvement in cognitive functioning as well as IQ. More recently, the MEND program has been shown to reduce future medical expenses when a family-based intervention is used.

In a cost benefit analysis study¹⁸, program developers measured the MEND family medical expenses 12 months before and after the program. The MEND program reduced medical expenses by 73 percent on average and most of this reduction was due to the family not needing urgent care or emergency department visits after the program. Our assumption is that families are now better equipped to management the treatment of the chronic illness.

Challenges for Family-Based Psychosocial Interventions

Programs like MEND are difficult to maintain. Of the 12 known CBT-based programs that have been studied internationally¹⁵, only 3 are still in operation today. The biggest hurdle is insurance reimbursement as very few providers in the country will pay for this level of care. As a result, these programs struggle to maintain additional sources of revenue once the initial research funding runs out.

Luckily in California, programs like MEND can access third party reimbursement from private market providers. Unfortunately, this leaves lower income families with less access to services even though they are more likely to benefit from such programs and the prevalence of chronic illness is higher in these families. Therefore, much more work is needed to help these families access beneficial services like family-based psychosocial interventions.

Need for Further Resources

On a local level, the Inland Empire Health Plan has begun to offer MEND as a resource with the advent of the Affordable Care Act. However, this is limited to children ages 8 through 21. While this is a great start, it is by no means enough locally or nationally, and they are not available for those that need it most. The research is clear; psychosocial interventions help and they reduce direct medical expenses. We need more resources for families with chronic illnesses.

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The views expressed in this article do not necessarily represent those of Loma Linda University Health or the Institute for Health Policy and Leadership.