"I don't really do much." This is not a typical response from a 17-year-old when asked how they spend their leisure time. But "Whitney" is not your typical teen. For the last two years, she's been unable to participate in her favorite activities: art classes, rock climbing, ice skating. Instead, she's been consumed by her headaches and abdominal pain, and struggling with her sleep cycle.
Since this was not the Whitney they knew, her parents brought her to the Cleveland Clinic Pediatric Pain Rehabilitation Assessment Clinic, where it was determined she would be a good candidate for the Pediatric Pain Rehabilitation Program.
Among the assessments Whitney would complete during her time in the program was The Children's Assessment of Participation and Enjoyment (CAPE).
The Cleveland Clinic Pediatric Pain Rehabilitation Program is a three-week, CARF-accredited, combined inpatient/day hospital interdisciplinary pain rehabilitation program. Patients are typically between the ages of 8 and 21, with varying diagnoses.
The program works to improve occupational functioning in children and adolescents with chronic pain; the focus of the program is on functioning rather than pain reduction.
The program is multimodal; it integrates rehabilitation therapies (e.g., occupational, physical and recreational), behavioral health services, and medical subspecialty care in an individualized but coordinated manner. Whitney was a fairly typical patient, being an adolescent female. Other patients in the program fall under the following demographics:
• Mean age=15.7 years old;
• Mean chronicity of pain=31 months;
• 23.9% male, 76.1% female.
Complex regional pain syndrome/reflex sympathetic dystrophy is the most common primary diagnosis, followed by abdominal pain and headache. Other primary diagnoses include fibromyalgia, postural orthostatic tachycardia syndrome (POTS), back pain, pain associated disability syndrome (PADS), arthritis, and limb pain.
One of the primary goals of this program is to have patients return to function despite pain. Patients typically see an improvement in functioning first, followed later by an improvement in pain. Assessing a patient's leisure functioning is a critical piece of this treatment.
The CAPE is a measure designed to document how children (ages 6-21) with or without disabilities participate in everyday activities outside of mandated school activities. It examines 55 activities in which children may have engaged in the past four months.
The CAPE rates children on the variables of diversity, intensity, with whom, where, and enjoyment. The child rates each item accordingly; subtest scores are totaled. The higher the subtest score:
• the more involvement and participation in a greater number of activities;
• the greater the enjoyment;
• the more involvement with different people and environments, and broader preferences.
Approximately 200 patients were asked to complete The CAPE upon admission to this program. The results were:
• "Diversity" scores show minimal participation in activities;
• "Intensity" scores demonstrate this population's lack of activity involvement;
• "With whom" scores demonstrate that this population engages primarily with family;
• "Where" scores describe that activities are found to be completed within the home setting;
• "Enjoyment" scores show this population enjoys the activities that they do participate in.
This assessment gives light to the lack of participation and social isolation seen in children with chronic pain. High "enjoyment" scores speak to the fact that this population chooses to participate in activities in which they truly want to participate, while avoiding all other activities.
Completing the Children's Assessment of Participation and Enjoyment (CAPE) provides Gayle Kanary, CTRS, and Cleveland Clinic staff key insights into how chronic pain can lead to a young person's social isolation. courtesy Suzie Daghstani
After reviewing the assessment with staff, Whitney, as most patients, was not surprised at her results. The assessment is used as a goal-setting tool to facilitate a return to "getting back in the game."
Striving for Success
Each area of the assessment is addressed by staff in the Cleveland Clinic program. Goals are set and interventions are completed to promote a successful return to function.
Diversity is addressed throughout the program by exposure to a variety of physical and creative activities, while building patients' confidence in their bodies and ability to be active. Education on community resources improves engagement upon discharge. Staff also provides assistance in setting realistic goals.
Intensity, or frequency, is most often a problem area due to a patient's lack of confidence, as well as a poor ability to manage pain. As they progress through the program, patients are better able to visualize themselves participating in meaningful activities. Staff assist patients in problem-solving pragmatic issues (monetary, transportation, time management, etc.) while stressing the importance of recreational and leisure activities. Education on time management is also provided.
Due to the lack of diversity and low intensity, social isolation follows. The structure of the program allows for work in socialization and independence. Patients work in peer groups, independent of the family unit. They are encouraged to break away from their family and initiate activities with peers. Social skills are addressed throughout the program to assist in peer engagement without focusing on pain.
'Back in the Game'
The purpose of the CAPE is to help guide treatments and interventions as well as assist in setting up a home-going plan. Patients and families are educated on the importance of returning to functioning despite pain. Leisure and recreation are stressed as necessary activities upon returning home. Attempts are made to resolve any physical, social or emotional issues that could impede success of this return.
The directed leisure assessment and treatments provide an important component to the holistic approach when treating patients with chronic pain. Attention to all aspects of functioning lead to the best outcomes and enduring improvement.
Upon her 6-week follow-up, Whitney shared that she has returned to school full time and participates in art club. She joined her choir and spends free time hanging out with friends.
Suzie Daghstani is occupational therapist, and Gayle Kanary is certified therapeutic recreation therapist, both at the Cleveland Clinic Children's Hospital Pediatric Pain Rehabilitation Program.