key: cord-1013291-opyqxvqi
authors: Lai, Byron; Wen, Huacong; Sinha, Tanvee; Davis, Drew; Swanson-Kimani, Erin; Wozow, Cynthia; Young, Raven; Powell, Danielle; Rimmer, James H.
title: The impact of COVID-19 on the lifestyles of adolescents with cerebral palsy in the Southeast United States
date: 2021-12-17
journal: Disabil Health J
DOI: 10.1016/j.dhjo.2021.101263
sha: 9c77879aca8da3bde681a57e4090f0b64cbc3852
doc_id: 1013291
cord_uid: opyqxvqi

BACKGROUND: The impact of COVID-19 on adolescents with cerebral palsy (CP) and their families is under investigated, particularly in the Southeastern United States. OBJECTIVE/HYPOTHESIS: Examine the impact of COVID-19 on lifestyle activities, general and mental health, and basic needs among a cohort of adolescents with CP in the Southeast U.S. A second purpose was to identify key factors that impacted their lifestyles. METHODS: Cross-sectional survey of adolescents with CP (ages 10-19 years) who completed a child-modified version of the Coronavirus Disability Survey (COV-DIS). Health and behavior items were associated with the perceived lifestyle impact of COVID-19. RESULTS: A total of 101 respondents completed the survey (mean age 14 ± 2 years). Respondents reported minimal-to-no change in general health since the COVID-19 outbreak. Basic needs were met for most families. Nearly all participants (94.1%) reported a mental health concern that resulted from COVID-19: 32.7% felt down or depressed; 47.5% felt little pleasure in doing things; and 64.4% felt isolated. Moreover, 74.3% reported decreased socialization; 51.5% reported reduced exercise participation; 43.6% reported difficulties in obtaining medical care. Most participants (90.1%) were negatively affected by COVID-19 and key associated factors were: reduced interactions with friends and family (p=0.001), exercise participation (p=0.016), interest in doing things (p=0.005), worsened depression (p=0.015), increased isolation from others and (p=0.02) at home (p=0.006), technological communication (p=0.00), and virus exposure (p=0.008). CONCLUSIONS: Study findings highlight problem areas that warrant urgent intervention among adolescents with CP located within the Southeast U.S.

Prospective participants were pre-screened and recruited from medical and billing 91 records of the hospital. Participants were eligible for the study if they were between the 92 ages of 10-19 years and had a medical diagnosis of cerebral palsy, as determined by 93

International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-94 CM) codes. Based upon a total of 283 eligible people from billing records of the 95 hospital, we aimed to reach a sample of 99 people to achieve an acceptable margin of 96 error for exploratory and categorical responses at 8% with a confidence level of 95% 97 (study purpose 1). [20] [21] [22] Based upon a sample size calculation using G*Power statistical 98 software, a sample size of 99 would also be sufficient for achieving a statistical power 99 of 0.8 for correlational analyses (study purpose 2) assuming the following parameters: 100

Chi-Square test, a small to moderate effect size w of 0.29, confidence level of 95%, and 101 1 degree of freedom. The study was conducted in accordance with the principles of 102 ethical human research as defined in the Declaration of Helsinki and was approved by 103 the University Internal Review Board for Human Use. 104

Consent forms and study surveys were sent via email invitation to the email address on 106 file (typically a caregiver's email) through REDCap (a secure web application for 107 managing online surveys and databases). The email invitation had a clickable link that 108 directed the prospective participant to the study consent form in their web-browser. The 109 consent form required digital signatures from a caregiver and the adolescent. The 110 consent form included a notice to waive the need for a separate assent form. After 111 digitally signing the consent form, each participant was directed through the study 112 J o u r n a l P r e -p r o o f surveys. After completing the surveys, participants were remunerated with a $40 gift 113 card that was mailed to their home. Adolescents were instructed to complete the surveys 114 with the supervision of a caregiver. If this was not possible, caregivers were instructed 115 to complete the forms for the adolescent by proxy. 116

Participants completed a total of 3 questionnaires that were estimated to last no 118 longer than a total of 45 minutes. The impact of COVID-19 was measured by a survey 119 that was developed for adults with disabilities, the COVID-19 Disability survey (COV-120 DIS), 23 which we modified for children (see Appendix A Questionnaire-2 (PHQ-2). 126

Our team modified the COV-DIS by altering and removing questions to make 127 the survey more suitable for adolescents. First, the lead researcher modified the wording 128 to be more appropriate for an adolescent reading level. Second, the questions were 129 reviewed by a Physical Medicine and Rehabilitation physician. Third, the questions 130 were further modified by an adolescent with CP and mild intellectual disability and their 131 caregiver. The modified COV-DIS included 9 questions on participant characteristics or 132 demographics (e.g., age, sex, race/ethnicity, job/student status, household annual 133 income, and residential area) and 18 self-reported items on how COVID-19 has affected 134 them and their lifestyle. Specifically, questions 1 and 2 probed perceived health status 135 and changes in health in response to COVID-19. Mood and mental status were assessed 136 through questions 3-5: little pleasure in doing things, feeling down, and changes in 137 J o u r n a l P r e -p r o o f feelings of isolation since the outbreak of COVID-19. Questions 6-10 were related to 138 COVID-19 exposure, testing, knowledge, and how much it affected their lives. 139

Questions 11-18 were related to school, basic needs, medical needs, and changes in 140 daily routine including exercise behavior. 141

Exercise participation was further measured using the Godin Leisure-Time 142

Exercise Questionnaire (GLTEQ). The GLTEQ 24 is a simple 7-day recall, 3-item 143 questionnaire, that asked people to self-report the number of bouts of physical activity 144 they performed within the past week that lasted longer than 15 minutes. There is 145 evidence to support the GLTEQ as a valid and reliable measure of physical activity 146 among adults with multiple sclerosis 25 and adolescents. 26 Participants also completed a 147 self-report measure of their functional mobility using the Gross Motor Function 148

Classification System (GMFCS) Family Report questionnaire. 27, 28 For the GLTEQ, a 149 health contribution score was calculated per participant, which was used to categorize 150 people as physically active or insufficiently active at baseline. This approach multiplies 151 the strenuous and moderate-intensity exercise values reported by participants by 9 and 152 5, respectively. The products were then summed into a single score. A score of <24 was 153 classified as physically inactive (i.e., not achieving sufficient volumes of physical 154 activity that are likely to elicit meaningful health benefits), whereas a score of ≥24 was 155 considered physically active. 29 156

Results from the modified COV-DIS and GMFCS were descriptively reported using 158 means, standard deviations, frequency counts, and percentages where appropriate. To 159 address the second study purpose, Chi-Square and Student t tests were used to examine 160 associations between the degree of life negatively affected by COVID-19 with 161 participant characteristics and lifestyle factors. The degree of life negatively affected by 162 J o u r n a l P r e -p r o o f COVID-19 was evaluated by COV-DIS question 13, which asked how much COVID-163 19 has negatively impacted the respondent's lifestyle and was scored as: 1) "A lot", 2) 164 "A fair amount," 3) "Just a little," 4) "Not at all". All participants were further 165 combined into two groups: 1) "a lot and a fair amount" and 2) "just a little and not at 166 all", due to the small sample size. Participant characteristics included sex, ethnicity, 167 living area, GMFCS, and annual household income) and lifestyle factors were survey 168 responses related to mental health (less interested in doing things, depression, and 169 isolation), COVID-19, and daily routine activities (responses to questions 19.1-19.7). 170

No multiplicity adjustments were conducted, considering the exploratory nature of the 171 study. Statistical analyses were conducted using IBM SPSS statistical software version 172

Results 174

From 283 families that were contacted, 101 people completed the survey (35.7% 175 respondent rate) between January 1 st to June 29 th , 2021. Participant characteristics are 176 shown in Table 1 . The sample consisted of primarily young adolescents (M age = 14 ± 2 177 yrs) and the sex and ethnicity representations were similar to U.S. Census Bureau 178 demographic estimates in the state of Alabama. 32 The sample also consisted of people 179 with a diverse mixture of GMFCS levels and household incomes. GLTEQ scores 180 indicated that the sample included a roughly equivalent mixture of physically active and 181 inactive adolescents, but the sample was generally classified as physically inactive. 182

Of the 101 participants, 83.2% (n=84) reported a positive health status, as either 184 "Excellent" (n=11), "Very Good" (n=36), or "Good" (n=37); 15.2% (n=15) reported 185 "Fair health"; and 2% (n=2) "Poor health". About 85.1% (n=86) reported that changes 186 in health after COVID-19 was "Much Better" (n=6), "Somewhat Better" (n=7), or 187 "About the Same" (n=73); 11.9% (n=6) reported "Somewhat Worse" health; and 3% 188 

A total of 35 people (34.7%) reported that they thought they were exposed to 199 COVID-19; 51 (50.5%) reported they had not been exposed; and 14 (13.9%) 200 reported that they did not know. Fourteen respondents (13.9%) reported that they 201 had contracted the virus. Forty-five respondents (44.6%) reported that they were 202 tested for COVID-19. When asked how much their life was affected by COVID-203 19, 29 respondents (28.7%) reported "a lot"; 44 (43.6%) reported "a fair amount"; 204 24 (23.8%) reported "just a little"; and 4 (4%) reported "not at all". A total of 25 205 respondents (24.8%) reported they had trouble getting information they trusted 206 about the virus. Sixty respondents (59.4%) reported having no trouble finding the 207 J o u r n a l P r e -p r o o f information they trusted about the virus, and 16 (15.8%) reported they did not 208 know. 209

Results for questions 11-18 are reported in Table 2 . Most respondents (74.2%; n=75) 211 attended school at home through virtual online classes or were home-schooled. 212

Preferences for attending school online or in-person were mixed. Some families (24.8%; 213 n=25) experienced at least some difficulty in obtaining food. Fourteen respondents 214 (13.9%; n=14) had at least some difficulty with obtaining medicine. Nearly half of the 215 respondents (43.9%; n=44) experienced some or a lot of difficulty with obtaining 216 medical care. Most participants (90.1%; n=91) experienced changes in their daily 217 activities due to COVID-19, such as home isolation and reduced interaction with friends 218 and family. Daily activities were altered, including groceries, medicine, and food being 219 delivered, as well as some reliance on computer, tablet, or mobile phone technology to 220 communicate with friends and family. Additionally, 52 people (51.5%; n=52) reported 221 reduced exercise participation. 222

Association results are presented in Tables 3 and 4 . Compared with participants whose 224 lives were "Just a little and not at all" negatively affected by COVID-19, adolescents 225 who reported life was negatively "a lot and a fair amount" impacted by COVID-19 226 were more likely to be those who had less interest in doing things ( receiving therapies, as well as a substantial proportion of children who reported 258 increased mental stress. 19 The present study added to this knowledge by providing a 259 more in-depth evaluation of COVID-19 affected lifestyle behaviors. Further research is 260 necessary to explain reductions in mental health and physical activity behavior and, 261 most importantly, how to improve these issues among adolescents with cerebral palsy in 262 the post COVID-19 era. 263

On a positive note, respondents' lifestyles appeared most affected by changes in 264 their behaviors, as opposed to illness. Only 14 respondents (13.9%) reported having 265 contracted COVID-19 and 35 respondents reported being exposed (34.7%). Contracting 266 COVID-19 is generally concerning among people with cerebral palsy, because 267 respiratory illness is a leading cause of morbidity and mortality in this population. 32 268

Instead of declines in physical health, study findings suggested that mental health and 269 healthy behaviors, including in-person socialization, community activity (e.g., going to 270 grocery stores instead of ordering food), and exercise were key lifestyle factors that 271 were altered by Nearly half of the sample reported decreased exercise participation, which was 273 similar to that reported among children with cerebral palsy in the Midwest U.S. 19 This is 274 an alarming finding because adolescents with cerebral palsy have been found to 275 participate in far lower levels of health-enhancing exercise compared to adolescents 276 without cerebral palsy prior to the pandemic. 16 closures or occupancy limits, and recommendations to social distance that were 288 widespread in Alabama at the time of the study. Although we are unable to explore the 289 cause of increase telecommunications leading to negative lifestyles, a likely explanation 290 was stress and burnout associated with overwhelming volumes of telecommunication 291 and online learning. 35 Other key factors were loss of interest in doing things, depression, 292 isolation, reduced exercise participation, and exposure to the virus. We were unable to 293 locate any other academic articles that presented similar findings for children with 294 cerebral palsy. Collectively, these findings imply that socialization with friends and 295 family, mental or emotional health, and exercise participation are key factors that 296 should be prioritized in interventions, which aim to reduce the perceived impact of 297 COVID-19 among the lifestyles of adolescents with cerebral palsy. One intervention 298 recommendation could be to improve these factors through telehealth (e.g., remote 299 exercise promotion or therapy and psychological counselling). Advantages of a 300 telehealth approach over usual care include increased social support and access to 301 services; 36, 37 benefits that are particularly useful in the Southeast, where transportation 302 and geographic location are substantial barriers to accessing healthcare. It is important 303 to note that study findings only identified key factors. Study findings did not provide an 304 in-depth explanation into how these factors could be optimally addressed or how the 305 factors were related to each other. These questions were beyond the purview of the 306 study and require further research. 307

This study findings included people who were recruited from a Children's hospital 309 within the southeast U.S. (a location with low access to medical care and high rates of 310 disability and primary health conditions), thereby rendering the study findings 311 generalizable only within this context. Moreover, while we instructed both adolescents 312 and a caregiver to complete the electronic survey together, we did not record or confirm 313 that this occurred, which could have affected the resultant responses. Additionally, we 314 did not conduct statistical corrections for multiple imputations (e.g., Bonferroni 315 correction) and, thus, the results should be interpreted with caution. 316

There were also a few limitations with the surveys used. The COV-DIS survey 317

was developed to learn about the experiences of people with disabilities during the 318 COVID-19 pandemic. Its objectives were to provide data on general and psychological 319 well-being and daily activities, all of which have likely been exacerbated by the 320 COVID-19 pandemic. Using this survey, or a modified version of it is a limitation 321 because it is not yet validated, and the psychometric properties have not yet been 322 established. However, many of the questions in the survey were selected from well-323 established and validated surveys. Additionally, we chose to include the GLTEQ as a 324 measure of physical activity due to it requiring only 5-10 minutes to complete, but it 325 and the health contribution score cut point we chose were not validated in adolescents 326 with cerebral palsy. There are very few surveys with strong psychometric properties to 327 capture physical activity among adolescents with cerebral palsy. 38, 39 The survey 328 instrument with the strongest psychometric properties in measuring physical activity 329 among children with cerebral palsy is likely the Children's Assessment of Participation 330 and Enjoyment (CAPE). Reviews have reported that the CAPE has adequate evidence 331 of validity (construct and content) and reliability (internal consistency, intrarater 332 reliability, and test-retest reliability) to support its use among adolescents with cerebral 333 palsy. 38, 40 However, the CAPE requires 40 minutes to complete, which was not 334 practical for the present study. 335

Lastly, in terms of timing, this study was conducted throughout the COVID-19 336 pandemic and relies on participant recall in comparing their life at the time of filling out 337 the survey to before the COVID-19 pandemic. A clearer within-subject comparison 338 would have been to compare the survey responses during the pandemic to those 339 measured prior to the pandemic, but this would have been impossible. 340

The present study provides a snapshot at one timepoint of the impact of COVID-19 on 342 adolescents with cerebral palsy, an underrepresented group within the published 343 literature. The surveys were completed primarily during the height of the coronavirus 344 pandemic when vaccines were starting to be delivered to older adults. For most of the 345 study respondents, vaccines were largely not available to middle aged adults or 346 children. Study findings highlight mental concerns and lifestyle factors that warrant 347 further research and urgent intervention efforts. 348 J o u r n a l P r e -p r o o f J o u r n a l P r e -p r o o f 

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