The Role of Psychology in the Care of Children With Pancreatitis

Abstract

Children with acute recurrent and chronic pancreatitis experience severe abdominal pain that may be intermittent or chronic. Pain is often debilitating, causing interference with academic, social, family, and extracurricular activities that are important to youth. Disruption of these routines and the unpredictability of pain flares place children with pancreatitis at increased risk for development of anxious or depressive symptoms. Pediatric psychologists trained in cognitive-behavioral treatment are well-suited to intervene on functional disability and mood disturbance, as well as teach coping skills. In an era where there is movement away from opioids, non-pharmacological strategies have an important place for pain management. In fact, positive outcomes following for children with other recurrent abdominal pain syndromes have been reported for this evidence-based intervention. In addition to pain management, pediatric psychologists can address other co-occurring behavioral and emotional problems in children with pancreatitis, such as needle phobia and poor adherence to the prescribed medical regimen.

PANCREATITIS IN CHILDREN

Pancreatitis from the index admission and single episode presents with pain in the majority of patients who seek medical attention.¹ Patients with a first attack of pancreatitis are at risk for acute recurrent or chronic pancreatitis (ARP/CP).² When the pancreatic disease progresses to recurrent and chronic pancreatitis, patients report pain that is either severe, or chronic, with patterns of recurrence as one of the leading causes of their morbidity.^3,4 Pain interferes with patients’ well-being, as well as with normal daily functioning, not only for the affected child, but also for the families and caregivers.⁴

Pancreatitis in children was thought to be uncommon, but we now know that its incidence has stabilized at about 1 case per 10,000 children for acute pancreatitis,^5,6 with a subset progressing to ARP/CP. The disease has a significant burden on the individual, the families, as well as the health care system, with increased cost over the years, even though there has been a trend toward shorter hospital stays.⁶ The sequelae of ARP/CP go beyond admissions to the hospital and pain medication requirements to having an overall effect on children’s growth, nutrition, diabetes risk, amongst other comorbidities.⁷ The complexity of caring for children with pancreatitis necessitates a multi-disciplinary approach at a pancreas center of excellence. This will ensure that the complex needs of children with pancreatitis, while diverse in nature, are met by the breadth of the expertise at those centers.⁷

PAIN AS A KEY FEATURE OF PANCREATITIS

While some children only experience abdominal pain during the course of a documented pancreatitis episode, others may develop chronic pain that persists between episodes. Chronic pain is defined by the International Association for the Study of Pain (IASP) as continuous or recurrent pain lasting longer than three months.⁸ The burden of pediatric chronic pain is evident with children reporting impairments in academic functioning, social engagement, family activities, sleep and psychological stability.⁹ Additionally, cost analyses suggest that the economic toll of patient health care utilization and parental lost work productivity for youth with chronic pain are estimated to be billions of dollars per year.¹⁰ Chronic pain is a significant and disabling symptom on its own, separate from the medical interventions and treatments required by children with pancreatitis.

The critical role of psychology and behavioral interventions has been recognized among adults with pancreatitis.¹¹ In fact, research shows that collaborative care, involving mental health professionals providing behavioral strategies to manage pain, can reduce healthcare utilization and associated costs.¹² With the ongoing opioid crisis, there is growing emphasis and enthusiasm for non-pharmacological approaches to pain management.¹³

PSYCHOSOCIAL LITERATURE RELATED TO PANCREATITIS AND CHRONIC PAIN

Despite pain being a key feature among youth with ARP/CP, there has been very little research dedicated to understanding the emotional experience or behavioral functioning of this population. Of the research that exists, pediatric patients with CP appear to have impaired health-related quality of life.¹⁴ However, research findings from children with recurrent abdominal pain can be presumed as applicable and may help shed light on the impact of pain in pancreatitis patients. The impact of recurrent or chronic abdominal pain can be experienced in many different ways in a child. Some of the co-existing challenges include functional disability, disruption in meeting typical developmental goals or achievements, and higher incidence of anxiety symptoms.¹⁵ Given the unpredictable nature of acute pancreatitis episodes, children may experience anticipatory anxiety about the next onset of pain.

EVIDENCE FOR PSYCHOLOGICAL TREATMENTS FOR PEDIATRIC CHRONIC/RECURRENT PAIN

The biopsychosocial model of chronic pain¹⁶ has provided the groundwork for developing evidence-based treatments with a consensus that the best treatment for chronic pain involves interdisciplinary approaches.¹⁷ This would include dynamic and close communication between multiple disciplines such as medicine, nursing, psychology, and therapists (physical and occupational) with the shared goals of rehabilitation and functioning. Psychological interventions, particularly, cognitive behavioral therapy (CBT), are an integral part of medical and pain management. The goals of psychological treatments include changing maladaptive thoughts and behaviors in order to improve functioning, enhancing coping skills, reducing distress, increasing adherence with treatment plans, and reducing disability.¹⁷ There is robust evidence to show that psychological treatments for youth with mixed pediatric chronic pain conditions significantly reduce functional impairment, pain intensity, and distress.¹⁸ Typically, CBT treatment components include psychoeducation about the physiology of pain and the brain-body connection, relaxation training, the use of cognitive- and activity-based distraction activities, behavioral activation with activity pacing to prevent overexertion, cognitive modification, problem-solving related to self-promoting behaviors (e.g., hydration intake, sleep hygiene, eating habits). Additionally, parental guidance and behavioral planning is emphasized, as well as modifying settings (e.g., school) in which pain and health concerns are problematic.^17,19 A recently published paper describing an ongoing randomized controlled trial of CBT for pain management targeted to children with ARP/CP highlights the potential benefits of this treatment modality.²⁰

OTHER PSYCHOLOGICAL PROBLEMS THAT CAN AFFECT YOUTH WITH PANCREATITIS

Beyond coping with pain, children with ARP/CP may encounter other issues that contribute to emotional distress or require health behavior change, which psychologists are well-suited to address (see Table 1). Examples include anxiety about medical appointments, needle procedures, coping with unpredictability of symptom flares, and problems adjusting to recurrent hospital stays. Additionally, regimens that are prescribed to limit flares or symptoms (e.g., pancreatic enzymes, low-fat diet) may be difficult to follow. In fact, around 50% of children and adolescents do not adhere to chronic medical regimens as prescribed.²¹ Although children with pancreatitis have been understudied thus far, it can be safely assumed that they would face similar problems adhering to medical regimens. Though it represents a different medical population, children with cystic fibrosis can struggle with adherence with pancreatic enzyme therapy. In one research study, data from two objective adherence measures (pharmacy refill history and electronic monitoring) showed that only 42–46% of prescribed doses were taken over the study period.²² Children with ARP/CP are frequently subjected to medical interventions, hospital admissions, and laboratory evaluation, particularly at a time when they are already experiencing excruciating abdominal pain during a flare. There is a high incidence of needle-related fear, anxiety, and even phobia among children in general. Unfortunately, escalating anxiety can contribute to traumatic medical experiences that can lead to significant future distress and/or avoidance of medical procedures altogether. Additionally, some children will avoid telling their parent or caregiver that they are having an abdominal pain flare out of fear of going to the hospital or getting blood drawn.

TABLE 1.

Psychosocial Problems Potentially Encountered by Children With ARP/CP and Their Families

Problems	Examples
Emotional
Anxiety	- Medical appointments - Needle-related procedures - Unpredictability of symptom flares - Progression of condition
Depression	- Feelings of sadness - Hopelessness about symptoms - Missing out on developmentally relevant activities (school, friends) - Lack of motivation to do things, even between episodes
Parent stress	- Lack of control over child’s symptoms - Missed work and other household responsibilities
Behavioral
Adherence concerns	- Poor follow through with pancreatic enzymes or low-fat diet

MODELS FOR PSYCHOLOGIST INTEGRATION IN THE CARE OF PANCREAS PATIENTS

Interdisciplinary care is critical for pediatric patients with pancreatitis given the medical complexity of this condition, as well as the equally impactful comorbid physical and emotional symptoms. In this model, providers from different disciplines (gastroenterology, endocrinology, pain, nutrition, surgery, social work) and psychologists combine their expertise into a single, integrated conceptualization of how to care for the entire well-being of the patient. A psychologist would be physically present in the clinic space and conduct his/her assessment as part of the treatment evaluation, giving immediate feedback to the treatment team and family in a fully integrated fashion. The benefits of this model include reducing delays in identifying comorbid behavioral health or mood symptoms, being able to immediately intervene on concerning symptoms, aiding the medical team in recognizing psychosocial factors affecting the patient’s clinical presentation, and assisting the family with finding evidence-based psychological treatments for comorbid concerns. Additionally, recurring psychological assessment at follow up visits permits better assessment of symptom and treatment progress, and identifying when a higher level of care (e.g., psychotropic medication, psychiatry referral) is needed. The benefits of developing a business plan for this integrated care model are multi-faceted, reflected in the recent standards for being designated a clinical center of excellence, criteria of pancreas centers of excellence have been published recently by the National Pancreas Foundation.²³

While psychologists should ideally be embedded into a medical clinic for new visit and follow up care, this is a resource that may not be available to all gastroenterology practices. Many practices have limited access to a psychologist (e.g., a psychologist who can only attend a portion of the visits) and need to find alternative methods for identifying youth at risk for poor coping or poor adherence to medical plans. The use of patient-reported outcomes as screening tools to identify impairment and distress can be helpful. There are a number of evidence-based measures that assess different domains of functioning, such as pain-rated impairment (e.g., the Functional Disability Inventory)²⁴ comorbid mood problems (e.g., PROMIS pediatric anxiety and depression measures),²⁵ or overall risk (e.g., Pediatric Pain Screening Tool),²⁶ that can be utilized to assess patient functioning in the absence of a full psychological assessment. Those patients scoring as “high risk” based on elevated symptom severity could be triaged to a full assessment by a psychologist, while youth with “low risk” status would merit monitoring or reassessment in the future.

In the absence of a screening battery (due to lack of time or expertise), medical providers should identify children presenting with the following comorbid concerns as meriting some degree of additional psychological evaluation: baseline chronic daily pain with acute pancreatitis episodes, poor school attendance, withdrawal from extracurricular activities, anxiety symptoms that may be contributing to pain amplification, depressed mood, poor adherence with dietary recommendations or enzyme therapy, or anticipatory anxiety about hospitalizations or needle-related procedures. In these situations, referral to a pediatric psychologist (psychologist who specializes in working with chronic medical conditions) or a child psychologist/therapist trained in providing CBT may be indicated. Identification of qualified psychologists to provide empirically-based treatments can be challenging. Often, these providers are associated with academic medical centers, health psychology practices, or university settings that specialize in youth with chronic health problems. It is beneficial to contact a potential psychologist collaborator, understand practice scope (e.g., ability to offer CBT), and determine practice patterns such as length of waiting for services.

Not all patients require the same extent of psychological intervention. In the age of technology, there are numerous websites, apps, and information portals that educate and instruct on CBT techniques for the high-functioning patient and/or a motivated family. These resources bridge the gap in settings in which a scarcity of qualified providers or psychosocial barriers (e.g., unreliable transportation) preclude patients from being able to follow up with a psychologist consistently. Nevertheless, these should not replace therapy services for a patient significantly struggling with persistent pain, low mood, or extensive anxiety.

FUTURE DIRECTIONS

From a clinical perspective, different models of integrating psychologists into the care of children with ARP/CP, discussed in the previous section, should be evaluated. For optimal multidisciplinary care, a pediatric psychologist should be included in new visit assessments for pancreatitis with the gastroenterology team. Ideally, the same psychologist should be available for routine follow-up visits (in conjunction with gastroenterology) for consistency of care. Given that mental health care does not need to be “hands on”, the option of telemedicine to reach patients with ARP/CP who do not reside close to the medical center is appealing, particularly for ongoing therapy that would need to occur more regularly than intermittently-scheduled medical visits. With the recent emphasis on integrating behavioral health providers into primary care practices,²⁷ the medical team should refer families back to the pediatrician for local support (either within the pediatrics practice or the community) to help them access services. At the very least, medical teams should incorporate screening using an empirically-validated measure of functional disability and/or mental health concerns (depression/anxiety). Screening may be completed by a nurse or social worker during the course of medical visits for routine monitoring, which would give insight into patients who could benefit from intervention. Medical teams should conduct repeated screening at each medical visit for psychological monitoring, which would inform the team about which patients and families may need increased frequency of visits or additional phone contact (e.g., to support adherence to the medical plan or to reduce family distress).

Regarding research, it will be important to include youth with ARP/CP in observational studies to understand whether the impact of acute and chronic pain is similar to or different from other abdominal pain conditions more prevalent in the literature. Additionally, children and adolescents with ARP/CP should be included in clinical trials of CBT to determine whether this treatment modality is effective in reducing functional disability and in improving coping in the same manner as for functional abdominal pain. Researchers should develop algorithms for determining which children and families are most likely to benefit from psychological intervention as part of their disease management, as such algorithms would allow for the best use of available resources.