Participation Restrictions among Children and Young Adults with Acquired Brain Injury in a Pediatric Outpatient Rehabilitation Cohort: The Patients’ and Parents’ Perspective
Abstract
:1. Introduction
- the nature and severity) of participation restrictions;
- differences regarding patients’ and parents’ perspectives on patients’ participation restrictions;
- the association between HRQoL and patient- and environmental factors on the one side and participation restrictions on the other side.
2. Materials and Methods
2.1. Design
2.2. Patients
2.3. Data Collection
2.4. Assessments
2.4.1. Demographic and Injury Characteristics
2.4.2. Participation Outcome Measure
2.4.3. Four-Level Categorization
- -
- Category 1, CASP score 100–97.5: Full participation; participating in activities the same as or greater than peers, with or without assistive devices or equipment.
- -
- Category 2, CASP score 97.5–81.0: Somewhat limited participation; participating in activities a bit less than peers. The patient may also need occasional supervision or assistance.
- -
- Category 3, CASP score 81.0–68.5: Limited participation; participating in activities less than peers. The patient may also need supervision or assistance.
- -
- Category 4, CASP score 68.5 or less: Very limited participation; participating in activities much less than peers, the patient may also need a lot of supervision or assistance.
2.4.4. Secondary Outcome Measures
- -
- Child/young adults’ factors: The Child and Adolescent Factors Inventory (CAFI). The 15-item CAFI is a parent-report outcome measure consists of a list of problems or impairments related to the patients’ health, cognitive, physical and psychological functioning. The CAFI is also part of the CFFS. Each item is rated on a 3-point scale: 1 = No problem; 2 = Little problem; 3 = Big problem. The final score is the sum of all item ratings divided by the maximum possible score of 54 (e.g., 36/54 = 0.67). This score then was multiplied by 100 to create an outcome on a 0–100-point scale. Higher scores indicate a greater extent of problems [45].
- -
- Environmental factors: Child and Adolescent Scale of Environment (CASE): The 18-item CASE is a parent-reported outcome measure and is designed to assess the frequency and impact of environmental barriers experienced by children and young adults with disabilities. The CASE is also part of the CFFS. Similar to the CAFI, each item is rated on a 3-point scale: 1 = No problem; 2 = Little problem; 3 = Big problem and the final score is calculated in the same way. Again, higher scores indicate a greater extent of problems [45].
- -
- Health-related Quality of Life (HRQoL): The 23-item Pediatric Quality of Life InventoryTM Generic Core Scales 4.0 (PedsQL™ GCS 4.0) is a patient-report and parent-report outcome measure and is used to determine the patients’ HRQoL [49] It is available in a Dutch language version and is validated for different age ranges and diagnoses (also for the for the pediatric TBI population) [50] It yields a total-score and 4 dimension-scores i.e., physical functioning (8 items), emotional functioning (5 items), social functioning (5 items), school/work functioning (5 items) [49] Items are answered on a Likert-scale (0 = never to 4 = almost always) and thereafter linearly transformed to a 0–100 scale (0 = 100, 1 = 75, 2 = 50, 3 = 25, 4 = 0). The results, items summed and divide by the number of items answered gives a final score between 0–100, with lower scores indicating diminished HRQoL [49,51].
2.5. Statistical Analysis
2.5.1. Characteristics
2.5.2. Primary/Secondary Outcome Measures
2.5.3. Four-Level Group Categorization (CASP)
2.5.4. Comparing Patients’ and Parents’ Perspectives
3. Results
3.1. Characteristics
3.2. Participation Outcomes
3.3. Four-Level CASP Categorization
3.4. Differences in Patients’ and Parents’ Perspectives
4. Discussion
4.1. Participation Restrictions
4.2. Community Participation
4.3. Correlations with the CASP and CAFI/CASE/HRQoL
4.4. Notable Results Found in the Current Rehabilitation-Based Population
- -
- Firstly, the majority of children and young adults with a mild TBI reported scores in the “very limited” category. These results suggest that the TBI population experience participation restrictions no matter the initial TBI severity. Therefore, targeting and monitoring these restrictions for all TBI severities is relevant at admission to rehabilitation treatment.
- -
- Secondly, late referral (over 6 months) to outpatient rehabilitation was common across all participation category groups based on the CASP total scores, in example; “somewhat limited participation category”–“very limited participation category”. “One-third up to 45% of the patients in the different participation categories were referred for rehabilitation more than 6 months after ABI onset. This was also common among more than one-third of the patients in the “very limited” category. Several explanations can be given for a delay in referral. Medical specialists and general practitioners could potentially underestimate (long-term) problems/restrictions of patients or simply do not recognize them and/or they may not be familiar with pediatric ABI care pathways. Parents and patients do not know what signals or problems to be alert of, may tend to choose a “wait and see” approach before seeking help and/or are not familiar with ABI support pathways [5].
4.5. Differences in Perspectives
4.6. Categorization of Severity of Participation Restrictions
4.7. Limitations
4.8. Directions for Future Research
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Patient Injury and Demographic Related Characteristics | Children 5–17 y, n = 217 | Young Adults ≥18 y, n = 43 | Total Cohort 5–24 y, n = 260 |
---|---|---|---|
Gender: Female n (%) | 112 (52%) | 23 (54%) | 135 (52%) |
Age (years) at admission | |||
median (IQR) | 14 (11–16) | 18 (18–20) | 14 (11–16) |
Time (months) between ABI onset and referral to rehabilitation | |||
median (IQR) | 4.0 (1–18) | 4 (2–19) | 4 (1–18) |
>6 months n (%) | 87 (40%) | 17 (40%) | 104 (40%) |
Traumatic brain injury (TBI) n (%) | 160 (74%) | 35 (81%) | 195 (75%) |
Severity levels TBI * n (%) | |||
Mild | 124 (78%) | 27 (77%) | 151 (77%) |
Moderate-severe | 15 (9%) | 5 (14%) | 20 (10%) |
Unknown | 21 (13%) | 3 (9%) | 24 (13%) |
Non-traumatic brain injury (nTBI) n (%) | 57 (26%) | 8 (19%) | 65 (25%) |
Causes nTBI n (%) | |||
Tumor | 25 (44%) | 2 (25%) | 27 (41%) |
Stroke | 11 (19%) | 5 (63%) | 16 (25%) |
Encephalitis/meningitis | 10 (17%) | 1 (12%) | 11 (17%) |
Hypoxia/intoxication | 2 (4%) | 0 (0%) | 2 (3%) |
Other/unknown | 9 (16%) | 0 (0%) | 9 (14%) |
Family Related Characteristics | Children 5–17 y, n = 209 | Young adults≥18 y, n = 36 | Total Cohort 5–24 y, n = 245 |
Living in a single-parent household n (%) | 34 (16%) | 8 (22%) | 42 (17%) |
Cultural background parents: non-Dutch n (%) | 16 (8%) | 2 (6%) | 18 (7%) |
Educational level parent** number (%) | |||
Low | 7 (3%) | 3 (8%) | 10 (4%) |
Intermediate | 41 (20%) | 6 17%) | 47 (19%) |
High | 162 (77%) | 27 (75%) | 188 (77%) |
Outcome Measure | Domain Scores/Total Scores | Patient Report | Parent Report |
---|---|---|---|
n = 223 | n = 245 | ||
Median (IQR) | Median (IQR) | ||
CASP 1 | Total Score | 82.5 (68–90) | 91.3 (80–98) |
Home/community living activities | 80.0 (63–90) | 90.0 (75–100) | |
Home participation | 87.5 (75–96) | 91.7 (83–100) | |
Community participation | 75.0 (56–92) | 87.5 (75–100) | |
School/work participation | 85.0 (67–95) | 95.0 (83–100) | |
PedsQL™ GCS-4.0 (HRQoL) 2 | Total score | 65.2 (53–78) | 60.9 (48–75) |
Physical health | 68.8 (50–86) | 68.8 (47–81) | |
Emotional functioning | 65.0 (45–85) | 60.0 (40–75) | |
Social functioning | 80.0 (65–90) | 75.0 (60–95) | |
School/work functioning | 50.0 (35–65) | 50.0 (30–60) | |
CAFI 3 | Total Score | NA | 56.9 (49–65) |
CASE 3 | Total Score | NA | 39.0 (33–51) |
Correlations $ | Patient Report | Parent Report | |
n = 223 | n= 245 | ||
Rho | Rho | ||
CASP total score | HRQoL total score | ρ 0.67 ** | ρ 0.62 ** |
CASP total score | CAFI total score | NA | ρ 0.60 ** |
CASP total score | CASE total score | NA | ρ 0.53 ** |
Patient-Report (CASP) n = 223 (100%) | ||||||||||
---|---|---|---|---|---|---|---|---|---|---|
Category | n (%) | CASP Totalscore # Median (IQR) | Age: Median (IQR) | Gender Female: n (%) | $ Admin to Rehab ≥6 m: n (%) | Cause TBI: n (%) | Severity TBI Mild: n (%) | a HRQoL Median (IQR) | ||
1 Full participation | 25 (11%) | 98.7 (98–99) | 15 (12–16) | 12 (48%) | 13 (52%) | 18 (72%) | 14 (88%) | 80.4 (75–86) | ||
2 Somewhat limited participation | 95 (43%) | 86.8 (84–91) | 14 (12–16) | 50 (53%) | 35 (37%) | 72 (76%) | 55 (86%) | 75 (63–82) | ||
3 Limited participation | 45 (20%) | 75 (71–78) | 15 (11–17) | 29 (64%) | 15 (33%) | 32 (71%) | 24 (83%) | 62 (52–68) | ||
4 Very limited participation | 58 (26%) | 57.9 (50–64) | 15 (13–16) | 26 (45%) | 15 (33%) | 45 (78%) | 39 (97%) | 47.3 (38–58) | ||
Parent-Report (CASP) n = 245 (100%) | ||||||||||
Category | n (%) | CASP Totalscore # Median (IQR) | Age: Median (IQR) | Gender: Female: n (%) | $ Admin to Rehab ≥6 m n (%) | Cause: TBI | Severity TBI: Mild | a HRQoL Median (IQR) | b CAFI Median (IQR) | b CASE Median (IQR) |
1 Full participation | 67 (27%) | 100 (98–100) | 15 (11–16) | 33 (49%) | 24 (36%) | 58 (87%) | 45 (92%) | 75 (63–83) | 47.1 (43–57) | 34.4 (33–36) |
2 Somewhat limited participation | 111 (45%) | 91.3 (88–94) | 13 (10–15) | 59 (53%) | 43 (39%) | 79 (71%) | 62 (86%) | 64.1 (54–77) | 56.9 (51–63) | 39.8 (33–50) |
3 Limited participation | 42 (17%) | 76.3 (73–80) | 14 (10–16) | 23 (55%) | 19 (45%) | 28 (67%) | 24 (89%) | 47.8 (41–55) | 63.7 (55–71) | 48.8 (43–62) |
4 Very limited participation | 25 (10%) | 61.4 (49–65) | 15 (12–17) | 13 (52%) | 10 (40%) | 16 (64%) | 12 (92%) | 42.4 (35–48) | 64.7 (59–74) | 53.2 (41–67) |
Paired Samples Total Group (5–24 Years) n = 209 | ||||
---|---|---|---|---|
CASP | Patient Report Median (IQR) | Parent Report Median (IQR) | Wilcoxon Z # | ICC $ |
Total Score | 82.5 (68–90) | 90.0 (80–97) | −8.2 ** | 0.54 |
Home/community living activities | 80.0 (63–90) | 90.0 (75–100) | −5.9 ** | 0.51 |
Home participation | 87.5 (75–96) | 91.7 (83–100) | −5.9 ** | 0.42 |
Community participation | 75.0 (56–92) | 87.5 (75–100) | −8.5 ** | 0.51 |
School/work participation | 85.0 (66–90) | 95.0 (80–100) | −6.2 ** | 0.57 |
CASP Categorization | Patient report Number (%) | Parent Report Number (%) | Patient/Parent Categorization ^ | Number (%) |
Same as parents | 110 (53%) | |||
- Full | 23 (11%) | 51 (24%) | Different from parents | 99 (47%) |
- Somewhat limited | 92 (44%) | 98 (47%) | a:1 category worse | 54 (26%) |
- Limited | 41 (20%) | 37 (18%) | b: 2 categories worse | 15 (7%) |
- Very limited | 53 (25%) | 23 (11%) | c: 3 categories worse | 10 (5%) |
Kw: 0.40 (95%CI 0.31–0.49), p < 0.001 | d: 1 category better | 18 (9%) | ||
e: 2 categories better | 2 (1%) | |||
Paired Samples Children (5–17 Years) n = 176 | ||||
CASP | Patient Report Median (IQR) | Parent Report Median (IQR) | Wilcoxon Z # | ICC $ |
Total Score | 83.1 (69–90) | 90.0 (80–97) | −7.4 ** | 0.54 |
Home/community living activities | 80.0 (63–90) | 90.0 (75–100) | −5.2 ** | 0.51 |
Home participation | 87.5 (75–96) | 91.7 (83–100) | −5.4 ** | 0.43 |
Community participation | 75.0 (56–92) | 87.5 (75–100) | −7.4 ** | 0.52 |
School/work participation | 87.5 (70–96) | 95.0 (82–100) | −5.6 ** | 0.55 |
CASP Categorization | Patient Report Number (%) | Parent Report Number (%) | Patient/Parent Categorization ^ | Number (%) |
Same as parents | 99 (53%) | |||
- Full | 20 (11%) | 41 (23%) | Different from parents | 77 (47%) |
- Somewhat limited | 83 (47%) | 86 (49%) | a: 1 category worse | 42 (24%) |
- Limited | 30 (17%) | 31 (18%) | b: 2 categories worse | 11 (6%) |
- Very limited | 43 (24%) | 18 (10%) | c: 3 categories worse | 8 (5%) |
Kw: 0.42 (95%CI 0.32–0.52), p < 0.001 | d: 1 category better | 14 (8%) | ||
e: 2 categories better | 2 (1%) | |||
Paired Samples Young Adults (18–24 Years) n = 33 | ||||
CASP | Patient report Median (IQR) | Parent report Median (IQR) | Wilcoxon Z # | ICC $ |
Total Score | 75.0 (65–86) | 90.0 (78–99) | −3.6 ** | 0.56 |
Home/community living activities | 80.0 (66–90) | 85.0 (75–100) | −2.8 * | 0.52 |
Home participation | 87.5 (75–90) | 91.7 (79–100) | −2.3 * | 0.37 |
Community participation | 62.5 (50–84) | 87.5 (75–100) | −4.0 * | 0.48 |
School/work participation | 75.0 (55–90) | 90.0 (74–100) | −2.8 * | 0.59 |
CASP Categorization | Patient report Number (%) | Parent Report Number (%) | Patient/Parent Categorization ^ | Number (%) |
Same as parents | 12 (37%) | |||
- Full | 3 (9%) | 10 (30%) | Different from parents | 21 (63%) |
- Somewhat limited | 9 (27%) | 12 (36%) | a:1 category worse | 11 (33%) |
- Limited | 11 (33%) | 6 (18%) | b: 2 categories worse | 4 (12%) |
- Very limited | 10 (30%) | 5 (15%) | c: 3 categories worse | 2 (6%) |
Kw: 0.27 (0.08–0.46), p < 0.05 | d: 1 category better | 4 (12%) | ||
e: 2 categories better | 0 (0%) |
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Allonsius, F.; de Kloet, A.; Bedell, G.; van Markus-Doornbosch, F.; Rosema, S.; Meesters, J.; Vliet Vlieland, T.; van der Holst, M. Participation Restrictions among Children and Young Adults with Acquired Brain Injury in a Pediatric Outpatient Rehabilitation Cohort: The Patients’ and Parents’ Perspective. Int. J. Environ. Res. Public Health 2021, 18, 1625. https://doi.org/10.3390/ijerph18041625
Allonsius F, de Kloet A, Bedell G, van Markus-Doornbosch F, Rosema S, Meesters J, Vliet Vlieland T, van der Holst M. Participation Restrictions among Children and Young Adults with Acquired Brain Injury in a Pediatric Outpatient Rehabilitation Cohort: The Patients’ and Parents’ Perspective. International Journal of Environmental Research and Public Health. 2021; 18(4):1625. https://doi.org/10.3390/ijerph18041625
Chicago/Turabian StyleAllonsius, Florian, Arend de Kloet, Gary Bedell, Frederike van Markus-Doornbosch, Stefanie Rosema, Jorit Meesters, Thea Vliet Vlieland, and Menno van der Holst. 2021. "Participation Restrictions among Children and Young Adults with Acquired Brain Injury in a Pediatric Outpatient Rehabilitation Cohort: The Patients’ and Parents’ Perspective" International Journal of Environmental Research and Public Health 18, no. 4: 1625. https://doi.org/10.3390/ijerph18041625