Date Presented 04/05/19
This poster explores the HRQOL of youth with MS, as measured by the KIDSCREEN27. Findings indicate a relatively robust HRQOL in a North American sample of 32 children and adolescents, however the potential need for OT program development in specified subgroups may exist. This information is important as we work to expand our role in health and wellness, potentially by helping children manage chronic illnesses such as MS.
Primary Author and Speaker: Andrea Tyszka
Additional Authors and Speakers: Ruth Farber
PURPOSE: As we work to support occupational therapy’s role in chronic illness, it’s important to have an understanding of health-related outcome measures of various populations. Health-related quality of life (HRQOL) is a fairly new construct in pediatric multiple sclerosis (MS), with the first study appearing just over ten years ago (MacAlister, Boyd, Holland, Milazzo & Krupp, 2007). Given that HRQOL is both implicitly & explicitly linked to the Occupational Therapy Practice Framework: Domain and Process, 3rd edition (American Occupational Therapy Association, 2014) it is a natural fit for study in our profession. Therefore, the purpose of this project was to provide an initial exploration of HRQOL in youth with MS, as a baseline for assessment of needs. The research questions were:
What is the self-reported HRQOL of youth with MS, as measured by the KIDSCREEN27?
Is there a relationship between age at HRQOL assessment, disease duration, age at disease onset & self-reported HRQOL in youth with MS?
Is there a difference in mean self-reported HRQOL scores between males vs females with MS, those who have initial monofocal presentation vs those with initial polyfocal presentation, & those who have confirmed MS vs healthy controls?
DESIGN: This study utilized a non-experimental quantitative methodology with descriptive & inferential statistics to examine self-reported HRQOL of youth with MS. A multicenter prospective cohort of children was gathered from 23 MS clinics across Canada & one from the US. Participants were recruited for the cohort at their initial demyelinating event so they could be followed longitudinally, however data for this study is limited to one point in time. Data from a total of 72 youths was used, 32 with MS & 40 healthy controls.
METHOD: The KIDSCREEN27 was used to measure generic self-reported HRQOL. It is a 27-item Likert scale derived from the 52-item full version. Scores from the 27-item version are clustered into five dimensions: physical well-being, psychological wellbeing, autonomy & parent relations, peers & social support, & school performance (KIDSCREEN Group Europe, 2006). Data was analyzed using descriptive statistics to describe the self-reported HRQOL of youth with MS. Pearson correlation coefficients were used to determine if relationships existed between continuous demographic & clinical variables; with independent sample t-tests & Mann-Whitney U tests used to determine if mean HRQOL differences existed between dichotomous variables.
RESULTS: The youth with MS in this sample scored highest in school functioning & lowest in psychological wellbeing. Positive relationships were identified between physical wellbeing & disease duration, with an inverse relationship identified between age of onset & physical wellbeing. Statistically significant mean differences were noted in physical wellbeing, with marginally significant differences noted in psychological wellbeing, between the children with initial monofocal presentation & those with initial polyfocal presentation; with monofocal presentation having a more favorable outcome. No statistically significant differences were found between males vs females, or youth with MS vs healthy controls.
CONCLUSION: This study confirms findings that identify a fairly robust HRQOL in North American youth with MS (O’Mahony et al., 2018) which lie in contrast to studies done roughly a decade ago (MacAllister et al., 2007). Further exploration of these variable outcomes is warranted. In relationship to practice, data from this study indicates the potential need for programming aimed at proactively bolstering HRQOL in youth with MS who are more at risk such as youth diagnosed as older adolescents, those newly diagnosed and those with an initial polyfocal presentation.
References
American Occupational Therapy Association. (2014). Occupational therapy practice framework: Domain and process (3rd ed.). American Journal of Occupational Therapy, 68(Suppl. 1), S1-S48. http://dx.doi.org/10.5014/ajot.2014.682006
KIDSCREEN Group Europe. (2006). The KIDSCREEN questionnaires: Quality of life questionnaire for children and adolescents handbook. Lengerich, Germany: Pabst Science Publishers
MacAllister, W., Boyd, J., Holland, N., Milazzo, M., & Krupp, L. (2007). The psychosocial consequences of pediatric multiple sclerosis. Neurology, 68(Suppl. 2), S66-S69.
O’Mahony, J., Marrie, R., Laporte, A., Bar-Or, A., Yeh, E. A., Brown, A.,…Banwell, B. (2018). Pediatric-onset multiple sclerosis is associated with reduced parental health-related quality of life and family functioning. Multiple Sclerosis Journal. Advance online publication. Doi:10.1177/1352458518796676
