The Effect of Coaching on Physical Activity and Quality of Life in Children and Adolescents with Cystic Fibrosis: A Quality Improvement Pilot Study

Purpose: Physical activity is well known to improve or maintain exercise capacity and overall health in patients with cystic fibrosis (CF). However, many patients do not meet recommended guidelines for physical activity. The purpose of this study was to determine if individualized, targeted coaching could improve the levels of physical activity and quality of life in children and adolescents with CF. Subjects: Twelve children with CF, ages 7 to 17, participated in this study. Method: Each participant completed a physical activity questionnaire (PAQ) and a disease-specific quality of life questionnaire (CFQ) at baseline and three months later. The participants were given pedometers and a 10,000 step per day target. Participants also participated in discussions regarding ways to increase physical activity appropriate for their interest, abilities and age. Weekly follow-up phone calls were made to obtain pedometer counts and discuss physical activities performed. Results: Physical activity scores (PAQ) improved in 6 of 12 participants. Quality of life improved in many dimensions of the CFQ, particularly in vitality (3 of 5 improved); emotional (8 of 12 improved) and respiratory (7 of 12 improved). Conclusions: The results of this small pilot study suggest that an individualized coaching approach to physical activity in children and adolescents with CF may improve physical activity levels and improve important aspects of quality of life in some children with CF. INTRODUCTION Cystic fibrosis (CF) is a genetic disorder affecting approximately 30,000 people in the United States.1 Children and adolescents with CF may have a variety of problems resulting from this genetic disorder, including progressive, obstructive lung disease and malabsorption, often leading to being underweight.1 Regular physical activity and exercise is recommended for these patients as a means to positively impact many of the effects of the disease. Participation in daily physical activity has been found to enhance airway clearance, improve pulmonary function, improve in quality of life, increase exercise capacity, improve body image, and decrease osteoporosis.2-5 In past studies, children who participated in an exercise program improved their perceived competency and self-esteem.6 Additionally, patients with CF with higher levels of aerobic fitness possess a much better chance of long-term survival than those with lower levels of fitness.78 However, physical activity participation rates in children and adolescents with CF are low. Nixon et al. reported that children with CF were significantly less active compared to their peers.2,7 In a recent study, physical activity was generally viewed positively by adolescents with CF, but poor motivation was cited by them as a barrier to participation.9 Homebased exercise programs have shown to increase exercise tolerance in older adolescents and adults with CF who had moderate to severe pulmonary symptoms.10 Thus, designing a home program could be effective in improving physical activity participation The Effect of Coaching on Physical Activity and Quality of Life in Children and Adolescents with Cystic Fibrosis: A Quality Improvement Pilot Study. 2 © The Internet Journal of Allied Health Sciences and Practice, 2010 rate in children. An individualized approach to physical activity counseling combined with regular motivational contact may be most effective. Christian and D’Auria explored the difference between implementing individualized exercise programs tailored to meet personal goals set by subjects and a control group of children receiving protocol care with predetermined goals.11 The intervention group demonstrated a decreased perceived impact of illness on quality of life. Therefore, it is possible that children with CF could also improve quality of life with a personalized approach to physical activity counseling and regular follow-up contact. Allowing the child to formulate personal treatment goals can help clinicians monitor the child’s health, outline the illness course, and improve the child’s quality of life.11 Additionally, educating patients and families about the benefits of physical activity and allowing freedom to choose the physical activities included in the program can help maintain exercise adherence.12 Quality improvement has been defined as “a formal approach to the analysis of performance and systematic efforts to improve it.”13 In 2007, the West Virginia chapter of the American Academy of Pediatrics offered grants to groups and clinics for demonstration projects related to quality improvement in target areas. The current project was funded to provide a structured approach to increasing physical activity in children and adolescents with special needs, in this case, CF. The aims of the grant were to 1) increase the level of physical activity in children and adolescents with CF, 2) reach at least 70% of eligible patients with individualized exercise recommendations, and 3) to improve quality of life through increasing physical activity. Prior to implementing this project, exercise capacity evaluations had been performed on an annual basis for all patients followed at the CF clinic. However, due to time constraints, there had been no attempt to formally set physical activity goals for each patient and no formal follow-up mechanism. We hoped that by providing a structured program to a subset of the patients, we could demonstrate improvements in physical activity and resulting quality of life. METHODS The study was approved by the West Virginia University Institutional Review Board for the Protection of Human Subjects prior to recruiting subjects. All participants signed assent forms, and their parents signed consent forms prior to data collection. Participants Participants were recruited over a 3-month period from the Cystic Fibrosis Center at West Virginia University, and ranged in age from 7 to 17 years of age. At the time of the study enrollment, there were 34 patients in this age group who were registered with the Center. Of these, 13 patients missed scheduled clinic appointments and could not be recruited. Two patients were excluded due to cognitive impairments, which would make understanding and completing the questionnaires difficult (history of closed head injury and mental retardation, respectively). Five potential participants declined to participate in the study. Fourteen patients agreed to participate in the study, but 2 did not complete baseline questionnaires and could not be contacted after the initial visit. Therefore, 12 subjects (7 female, 5 males, mean age 11.9 years) participated in the study. All participants were medically stable and free of any acute pulmonary exacerbation at time of recruitment. Questionnaires The Cystic Fibrosis Questionnaire (CFQ) is a disease-specific, health-related quality if life measure.814 Two versions of the CFQ were used: the teen/adult (ages 14+) and child (ages 12-13). The child version of the CFQ has the following dimensions: physical, respiratory, emotional state, weight, eating disturbances, social, treatment burden, body image, and digestion.1415 These dimensions are also on the teen/adult version with the additional dimensions of health, roles, and vitality. Both the child version and the teen/adult CFQ have been proven valid and reliable measures for patients with CF.1516 This assessment tool is clinically important to generally assess the individual’s functioning and to identify problem areas that require intervention.15 The Physical Activity Questionnaire (PAQ) is a self-administered, 7-day recall instrument that asks about physical activity performed during school, free time, evenings, and weekends.17 There are two versions: the physical activity questionnaire for children (PAQ-C) and the physical activity questionnaire for adolescents (PAQ-A). The PAQ-C is used for elementary schoolaged children (grades 4-8) who are in school and participate in recess regularly, while the PAQ-A is appropriate for high school students (grades 9-12).17 The PAQ is supported as a valid and reliable measure of general physical activity levels from childhood to adolescence; however, to our knowledge it has not been used in CF. Procedures The participants were seen during a regularly-scheduled clinic visit at the beginning of the 3-month study enrollment period at which time the investigators recruited, obtained consent and assent and performed baseline measurements of each participant. The session lasted approximately 30 minutes during which time the participant completed the CFQ and the PAQ, appropriate to the participant’s age. The principle investigator, a board-certified cardiovascular and pulmonary physical therapy clinical The Effect of Coaching on Physical Activity and Quality of Life in Children and Adolescents with Cystic Fibrosis: A Quality Improvement Pilot Study. 3 © The Internet Journal of Allied Health Sciences and Practice, 2010 specialist with 20 years of experience with CF, then discussed physical activity interests and availability with each participant and his or her family members to determine recommendations for each child regarding type and frequency of physical activities that could be performed. Participants often did not give a specific goal, but some gave specifics such as improving basketball skills or getting stronger. A pedometer was given to each participant, and a goal of 10,000 steps per day during the chosen physical activities was set initially. Participants were also given three monthly calendars to record daily pedometer counts and instructed to mail the calendars to the principle investigator in provided stamped, addressed envelopes. Follow-up Contacts At the initial testing session, participants chose a day of the week and time for follow-up telephone calls for the next 12 weeks. During these calls, investigators asked about the variety, quantity, and experiences of performing physical activities in the preceding week. Any problems noted were addressed in ways to help minimize barriers through joint problem-solving with the participants. Some examples of physical activities reported by participants include playing outside with older siblings, walking to the park, walking a dog, swimming, playing soccer, bike riding, riding a scooter, and hiking. Participants were also congratulated for meeting their pedometer goals and other physical activities performed. If participants were regularly meeting the 10,000 step goal, these were increased to 15,000 steps daily. Two subjects were able to increase their pedometer counts to 20,000 steps on a few occasions. Following the 12th week contact, participants completed the CFQ and the PAQ either at the clinic during a routine follow-up appointment (n=2) or over the telephone (n=10). Data Analysis Questionnaires were scored according to the scoring guides and data were entered into a spreadsheet. Means and standard deviation of PAQ score and each dimension of the CFQ were calculated. Due to the small sample size, no inferential statistics were performed. RESULTS Questionnaire Data Analysis Half of the participants (6 of 12) improved their PAQ score from baseline to post-testing, while 3 stayed the same and 3 decreased over the study period. The mean score increased from 3.0 (SD 0.73) to 3.3 (0.58) for the group. Mean scores at baseline and post-test for each dimension of the CFQ are found in Table 1. Higher scores on the CFQ represent improved ratings of quality of life in each dimension. Table 1: Means (SD) of CFQ Dimension Scores CFQ Dimension Baseline mean Post-test mean Physical 86.1 (10.4) 81.8 (15.0) Emotional state 79.4 (12.4) 85.3 (11.5) Social 75.8 (14.8) 74.8 (10.8) Body image 74.3 (17.6) 79.6 (23.0) Eating disturbances 88.8 (12.2) 90.8 (10.9) Treatment burden 70.2 (17.2) 77.8 (15.7) Respiratory 77.5 (10.2) 84.7 (10.1) Digestive 86.2 (20.4) 89.0 (14.2) Role 100.0 (0) 100.0 (0) Vitality 63.5 (4.3) 73.4 (9.9) Weight 60.0 (25.1) 66.6 (21.2) Health 75.6 (8.4) 69.0 (12.9) The greatest number of participants improved in the emotional dimension (8 of 12 improved), and the respiratory dimension (7 of 12 improved). More participants showed declines than improvements in the social dimension (6 of 12 declined), perhaps reflecting the timing of the study over the summer school break, which may have decreased their opportunities to socialize with peers. For the other dimensions, there were no general trends in the changes. In the digestive dimension, 7 of the 12 participants had no change, but their scores were maximal at both times, perhaps reflecting a ceiling effect of the tool. The Effect of Coaching on Physical Activity and Quality of Life in Children and Adolescents with Cystic Fibrosis: A Quality Improvement Pilot Study. 4 © The Internet Journal of Allied Health Sciences and Practice, 2010 In the 5 adolescent participants, 3 showed improvement in the vitality dimension (Table 2) and 2 in the weight dimension, while the others had no change in either category. Self-perceived quality of life in the health dimension improved in only 1 adolescent, declined in 2 and remained unchanged in 2. Table 2 Participant scores on teen/adult CFQ dimensions Participant Role Vitality Weight Health Baseline Post-test Baseline Post-test Baseline Post-test Baseline Post-test 1 100 100 67 67 67 67 78 89 2 100 100 67 67 33 33 67 56 3 100 100 67 92 100 100 78 78 4 100 100 58 66 33 66 66 66 5 100 100 58 75 67 67 89 56 Mean 100 100 63.5 73.5 60 66.6 75.6 69 SD 0 0 4.3 9.9 25.1 21.2 8.4 12.9 Results in the weight and health dimensions were quite variable. In the role dimension, all participants scored the maximum at both time periods, again perhaps reflecting a ceiling effect in this subset. A 4-point difference between baseline and post-test respiratory dimension scores of the CFQ has been determined to be the minimal clinically important difference (MCID).18 Results from the respiratory dimension revealed 7 of the 12 subjects reached the MCID in score from baseline to post-test. This dimension is particularly important as respiratory symptoms are one of the main concerns in the management of CF. Adherence Regarding the weekly follow-up phone calls, 64 out of a total of 144 calls attempted by the investigators were answered by the participants (44%, Table 3). The pedometer log-sheets were returned by only four of the subjects. Of these subjects, three met the goal of 10,000 steps at least 50% of the time. Table 3: Participant Demographics and Adherence Measures Gender Age Calls Successfully Completed (%) Adherence to Meeting Goal1 (%)