The purpose of this feasibility study is to test the potential for successful implementation of an intervention designed to study the effect of six hours out of bed time on the overall level of deconditioning in pediatric stem cell transplant (SCT) patients. Previous research has demonstrated that deconditioning occurs rapidly over the course of the hospitalization post-transplant and can negatively impact quality of life. By encouraging patients to be out of bed for six hours each day, it is anticipated that patients will experience less deconditioning than those patients who previously had no established minimum time out of the bed.
Study Type
INTERVENTIONAL
Allocation
NON_RANDOMIZED
Purpose
SUPPORTIVE_CARE
Masking
NONE
Enrollment
30
* 38 question questionnaire * Answers range from 1=all of the time to 5=none of the time
* 38 question questionnaire about child * Answers range from 1=all of the time to 5=none of the time
* 38 question questionnaire about child * 49 question questionnaire about parent * Answers range from 1-all of the time to 5=none of the time
Washington University School of Medicine
St Louis, Missouri, United States
Recruitment and retention of participants throughout the study
-Analyze the number of participants enrolled who continue through the 6 week clinic visit
Time frame: Baseline through 6 week clinic visit (up to an estimated 82 days)
Number of participants who achieve 6 hours out of bed through the 6 week clinic visit
Time frame: Baseline through 6 week clinic visit (up to an estimated 82 days)
Quality of life as measured by General Health Module questionnaires
Time frame: Discharge from hospital (estimated to be 40 days)
Quality of life as measured by General Health Module questionnaires
Time frame: Baseline through 6 week clinic visit (up to an estimated 82 days)
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* 38 question questionnaire about child * 49 question questionnaire about parent * Answers range from 1-all of the time to 5=none of the time
* 34 question questionnaire about child * 49 question questionnaire about parent * Answers range from 1-all of the time to 5=none of the time
* 34 question questionnaire about child * 49 question questionnaire about parent * Answers range from 1-all of the time to 5=none of the time
-16 questions about demographics such as household income, race, and gender
* Uses Fitbit Flex * Log that lists time in 15 minute increments and allows for checking when out of bed and describing the activity that occurred while out of bed
* 18-item, 7-level ordinal scale instrument that measures a child's consistent performance in essential daily functional skills. Three main domains (selfcare, mobility, and cognition) are assessed by interviewing or by observing a child's performance of a task to criterion standards * Categorized into 2 main functional streams: "Dependent" (ie, requires helper: scores 1-5) and "Independent" (ie, requires no helper: scores 6-7). Scores 1 (total assistance) and 2 (maximal assistance) belongs to the "Complete Dependence" category. Scores 3 (moderate assistance), 4 (minimal contact assistance), and 5 (supervision or set-up) belongs to the "Modified Dependence" category. Scores 6 (modified independence) and 7 (complete independence) belongs to the "Independent" category.
-Isometric muscle strength is tested in specific positions, usually with the muscle at an optimal working length. Using a "break" test, the test giver overpowers the muscle being tested to determine the muscle grade.
* Using an aerobic step, the participant walks up and down for a given amount of time with the heart rate being checked before and after * Using the difference in heart rate and a shortness of breath scale, this test is able to give an estimate of aerobic tolerance
* 7 question questionnaire about child * Answers range from 1=all of the time to 5=none of the time
* 10 question questionnaire about child * Answers range from 1=all of the time to 5=none of the time
* 7 question questionnaire about child * 49 question questionnaire about parent * Answers range from 1=all of the time to 5=none of the time
* 7 question questionnaire about child * 49 question questionnaire about parent * Answers range from 1=all of the time to 5=none of the time