Does a Mainstream Summer Camp Experience Improve Pediatric Kidney Patients' Physical Fitness and Self Concept?

BACKGROUND:

Children and adolescents with CKD have high rates of hospitalization, and those with End-Stage Renal Disease (ESRD) have a remaining life expectancy of about 20 years with increased risk of premature death due to cardiovascular disease. Most have much less physical endurance than their age matched peers with the degree of underperformance loosely correlated with the severity of their renal disease. Cardiovascular disease, chronic inflammation, anemia, low muscular strength and/or bone disease are among the factors considered responsible for the poor physical conditioning. However, the investigators hypothesize that the most important cause is inactivity caused by a varying combination of parental 'protection', limited or poor peer inaction, and patient choice. In addition, children who require chronic hemodialysis have an enforced 10-14 hours weekly of enforced inactivity. Cardiovascular morbidity is commonly associated with chronic kidney disease and physical endurance is a measure of cardiovascular health. In addition many children with chronic kidney disease demonstrate poor self-concept, in part related to their lack of physical endurance and limited peer contact.

Multiple studies of adults with chronic kidney disease have documented poor physical conditioning and function. Over the past decade, many studies have demonstrated in adults with CKD a significant benefit of regular exercise on physical fitness, walking capacity, blood pressure, and health related quality of life. Several small studies have shown a modest improvement in children and adolescents with CKD but these studies have had high drop-out rates and problematic compliance.

A 2012 study by Akber et al using pedometer measurements showed that over a 7 day period, children, adolescents, and young adults with CKD (n=44) on average walked about 50% less than expected using data collected by NHANES as a standard. Females walked less than males and older children were less active than younger children. On a 6 minute walk test, males scored < 2 standard deviation below the expected mean and females <4 standard deviation below the mean. There was no measured difference between stage of CKD, dialysis, or transplant status.

In 1975 the Ruth Gottscho Kidney Foundation partnered with the Albert Einstein College of Medicine and the Frost Valley YMCA to develop the first summer camp program capable of performing hemodialysis and caring for children with chronic kidney disease. One of the guiding principles of this program is that kidney campers (as well as some children with other chronic illnesses) are mainstreamed in with the general camp population and participate in the same activities as their age matched peers. Each summer, there are 4 two week camp session with about 500 campers attending each session. The program has run each summer since 1975, and the enrollment of kidney campers has varied from 25 to 50 each summer. The Frost Valley YMCA is located in the Catskill Mountains approximately 120 miles from New York City and is spread over about 2000 acres.