By Vibha Anand, PhD; Steven J. Spalding, MD; and Andrew S. Zeft, MD, MPH

Pain is the most distressing aspect of disease in children and can play a predominant role in their daily lives. A landmark report from the Institute of Medicine (IOM), Relieving Pain in America,¹ addresses deficiencies in pain assessment and management in the U.S. healthcare system and calls for progress in providing complete and consistent assessment of pain while identifying the need for more pain research.

Children who live with one or more chronic conditions, such as juvenile idiopathic arthritis (JIA), and their families can ardently confirm the findings of this IOM report. Children with JIA who experience pain regularly perceive themselves to be more disabled and are more likely to restrict their activity. Their disease-related pain commonly persists into adulthood and can significantly impact their productivity and quality of life.

Past research has shown that disease activity and pain often do not correlate in children and adolescents suffering from one or more chronic conditions. However, certain behavioral risk factors may influence the pain experience in children with JIA.^2-4

PROBE-ing a path to better pain assessment

To promote complete and consistent assessment of pain in our pediatric rheumatology practices, Cleveland Clinic Children’s Center for Pediatric Rheumatology has developed a computerized clinical decision-support system referred to as Patient Risks, Outcomes and Barriers Evaluation (PROBE).

PROBE screens patients and their families in the waiting room using standardized instruments administered via iPads®. The instruments were developed using evidence-based guidelines for pain and associated behavioral risk factors, such as sleep deprivation, anxiety, depression or painful conditions affecting a caregiver living in the child’s home.

Results from this screening are integrated into the busy clinical workflow of our pediatric rheumatology practices. Patients are screened in the waiting room at every visit, the screening instruments are auto-scored, and pertinent risk factors and above-threshold scores are flagged for the clinician. Additionally, clinicians document patients’ disease activity-related measures (e.g., active joint counts) in PROBE, which allows monitoring of patient outcomes and process measures. This may ultimately enable treatment decisions guided by predictive modeling as more data are collected.

A distinctive approach to pain in pediatric rheumatology

We believe our approach to pain assessment in pediatric rheumatology is unique and innovative. By using PROBE, we have embedded into a pediatric clinical decision-support system the process of identifying children and adolescents at increased risk for developing chronic pain. Furthermore, PROBE is based on principles of shared decision-making,⁵ a theoretical model that involves active participation of both provider and patient/caregiver in exchange for information related to care or treatment decisions.

Because the system can be deployed in both the waiting room and the exam room and used by patients/caregivers and clinicians alike, PROBE represents an attractive and viable IT platform for both clinical research and practice.

Predictive tool in the works too

As we continue to collect PROBE-based screening data, we are developing a predictive tool, the Pain Comorbidity Assessment Tool (P-CAT). P-CAT will be used to prospectively identify children and adolescents at higher risk of pain. This tool will also support more-tailored and dynamic interventions, such as facilitating self-management of pain-related conditions using educational materials, provider notifications or patient surveys.

Insights from an early assessment

To the best of our knowledge, our center is the first site to prospectively evaluate behavioral risk factors for chronic pain in routine pediatric rheumatology care.

In a pilot study using PROBE screening data from 136 patients presenting to our pediatric rheumatology clinic, we found that 60 patients (44 percent) reported chronic pain (self-report of pain > 3 days a week for > 3 months). Compared with their sample counterparts who did not report chronic pain, patients reporting chronic pain:

• Tended to be older (median age, 15 years)
• Had higher weekly pain scores (3 points higher, on average)
• Reported significantly poorer overall well-being (median score of 7 on a 0-10 scale, with 10 being worst)

We also found that compared with pediatric rheumatology patients not reporting chronic pain, those patients who do report chronic pain:

• Are at least two times more likely to report sleep issues (e.g., problems falling asleep or feeling sleepy during the day, in school or while driving)
• Have significantly poorer pain coping skills and efficacy (e.g., less frequently feel they can do something to change their pain, change their moods/feelings when hurt or in pain, or easily deal with the pain)
• Have significantly higher anxiety-related symptom scores (e.g., school avoidance and significant somatic symptoms)
• Are significantly more likely to have a parent with a history of jaw, spine, lower back, leg or arthritis-related pain

Implications for long-term treatment and care planning

Our findings have implications for long-term treatment and care planning. For example, assessment of sleep impairment requires referral to a sleep specialist and appropriate follow-up. Similarly, assessment of inadequate coping skills should prompt referral for cognitive behavioral therapy (with follow-up), and anxiety-related symptoms call for a full psychosocial evaluation.

Thus, as we continue to develop the PROBE tool, we plan to generalize it for care settings outside our health system. We believe our approach has value for pain assessment in many chronic pediatric conditions — including sickle cell disease, inflammatory bowel disease and cancer — and can be used in additional research and clinical settings as well.

Acknowledgment

The authors gratefully acknowledge two sources of partial funding for the pilot study of PROBE: the Research Program Committee of Cleveland Clinic’s Lerner Research Institute, and donor funds made available through Cleveland Clinic’s Pediatric Institute.

References

1. Institute of Medicine. Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research. Washington, D.C.: National Academies Press; 2011.
2. Bromberg MH, Gil KM, Schanberg LE. Daily sleep quality and mood as predictors of pain in children with juvenile polyarticular arthritis. Health Psychol. 2012;31(2):202-209.
3. Margetic B, Aukst-Margetic B, Bilic E, et al. Depression, anxiety and pain in children with juvenile idiopathic arthritis (JIA). Eur Psychiatry. 2005;20(3):274-276.
4. Schanberg LE, Anthony KK, Gil KM, et al. Family pain history predicts child health status in children with chronic rheumatic disease. Pediatrics. 2001;108(3):E47.
5. Ruland CM, Bakken S. Developing, implementing, and evaluating decision support systems for shared decision making in patient care: a conceptual model and case illustration. J Biomed Inform. 2002;35(5-6):313-321.

A complete bibliography is available from Dr. Anand.

Dr. Anand is a researcher in the Center for Pediatric Rheumatology and the Department of Quantitative Health Sciences.

Dr. Spalding is a pediatric rheumatologist in the Center for Pediatric Rheumatology.

Dr. Zeft is Head of the Center for Pediatric Rheumatology.