Translation and cross-cultural adaptation of the ICHOM standard set for stroke: the Dutch version.

INTRODUCTION: The International Consortium for Health Outcomes Measurement (ICHOM) developed a standard set of patient-centered outcome measures for use in stroke patients. In addition to the Patient-Reported Outcomes Measurement Information System (PROMIS) Global Health, it is comprised of 25 questions that are not part of a specific questionnaire. This study aimed to translate these 25 single questions into Dutch. METHODS: Two native Dutch-speaking translators independently translated the original ICHOM questions into Dutch. A consensus translation was made by these translators and a third person. This translation was subsequently translated back to English independently by two native English-speaking translators. Afterwards a pre-final version was made by consensus of a committee. After field-testing among 30 stroke patients, a final version was made. RESULTS: The forward and backward translations led to eight cross-cultural adaptations. Based on the interviews with stroke patients, 12 questions were changed to enhance comprehensibility leading to a final Dutch translation of the 25 single questions. CONCLUSIONS: A Dutch translation of the 25 single questions of the ICHOM Standard Set for Stroke was developed. Now a complete ICHOM Standard Set for Stroke can be used in Dutch populations allowing comparison and improvement of stroke care.

Fatigue in young patients with acquired brain injury in the rehabilitation setting: Categorizing and interpreting fatigue severity levels.

PURPOSE: Fatigue in patients with acquired brain injury (ABI) is common. However, to better target fatigue, clear ways to categorize/interpret fatigue-severity in individual patients are lacking. This study aims to determine/categorize fatigue severity among children, adolescents, and young adults with ABI. METHODS: This cross-sectional study included young patients admitted to outpatient rehabilitation and their parents. To determine fatigue, the PedsQL™Multidimensional-Fatigue-Scale was used (MFS, scores 0-100, lower scores = higher fatigue, patient-/parent-reported). Based on scores from a reference population, four categories were formed: "1 = no/little fatigued" to "4 = severely-more fatigued." RESULTS: All scores were lower than those from the reference population, with comparisons in the adolescent and young adult groups reaching statistical significance (p < .05). The proportions of patients in category 4 were: 9%/50%/58% among children/adolescents/young adults, showing that many patients were "severely-more fatigued"-than the reference population. CONCLUSIONS: Measuring fatigue and categorizing fatigue severity looks promising for clinical practice and could help to better target fatigue.

The outcomes of a vocational rehabilitation and mentorship program in unemployed young adults with acquired brain injury.

BACKGROUND: Persons with disabilities are at risk for unemployment with negative long-term consequences. OBJECTIVE: This study aimed to explore the process and outcomes of a novel vocational rehabilitation (VR) program based on the concept of mentorship. METHODS: Observational, retrospective study including unemployed young adults with acquired brain injury (ABI) taking part in a VR program including assessment, training, individual counselling and mentor support from volunteering professionals. Adherence to the program and work status were registered and at follow-up all patients were invited to complete a general questionnaire and EuroQol 5D. RESULTS: 49 patients started the program, with 41 completing the follow-up. Median age was 31 years and 19 were male. Median duration of the program was 8 months. At follow-up, 9 patients had acquired paid employment, 7 with the support of a mentor; 6 of whom were bothered by health problems at work. Nine patients left the program prematurely, with insufficient financial support for continuation being the primary reason for withdrawal (n = 6). CONCLUSIONS: A VR program including a mentor may be a promising program for patients who are unemployed at onset of ABI. Lack of financial support to complete the program and concurrent health problems were found to hamper the process and outcomes of the program, respectively.

Aging With Cerebral Palsy: A Photovoice Study Into Citizenship.

Background: Adults with cerebral palsy (CP) may experience an increasing impact of their disability on daily life and this may interfere with their citizenship. Citizenship is a layered construct. Next to formal and theoretical significations, and civil rights acts such as the UN Convention on the Rights for Persons with Disabilities (CRPD), the meaning of citizenship is formed by the person themselves. The present study aimed to gain insight into what citizenship means for adults with CP 40 years or older and what is needed to support and pursue their citizenship to improve person-centered rehabilitation which can facilitate this process. Methods: Adults with CP (>40 years) without intellectual disability were recruited from medical records of a large rehabilitation center to participate in a qualitative study using the photovoice method. Participants were asked to take photos of objects or life situations that constituted citizenship for them; these photos were then the prompts for the semi-structured interviews that were held face-to-face at their homes. Background and clinical characteristics were gathered using a short face-to-face questionnaire. Data were analyzed through inductive thematic analysis. Results: Nineteen adults participated [mean age (SD) 57.8 (9.4) years (range 44-79), six men]. From the analysis four themes emerged: (a) Meanings of citizenship; (b) Citizenship: Facilitator and barriers; (c) Paradoxes of support and participation; and (d) Future. Furthermore, next to the ability to participate in society without restrictions, sense of belonging was reported to be an important aspect of "meanings of citizenship." The physiotherapist was perceived as an important health professional to maintain physical activity and deal with the impact of aging with CP on daily activities. Complex healthcare and support services regulations and aging affected citizenship negatively. Conclusion: Middle-aged and older adults with CP view citizenship as the ability to participate and belong in society. To optimize their citizenship the challenges and individual needs must be seen and supported by person-centered rehabilitation and support services. Simplification of complex healthcare and services regulations can further improve citizenship.

Participation Restrictions among Children and Young Adults with Acquired Brain Injury in a Pediatric Outpatient Rehabilitation Cohort: The Patients' and Parents' Perspective.

Improving participation is an important aim in outpatient rehabilitation treatment. Knowledge regarding participation restrictions in children and young adults with acquired brain injury (ABI) is scarce and little is known regarding the differences in perspectives between patients and parents in the outpatient rehabilitation setting. The aims are to describe participation restrictions among children/young adults (5-24 years) with ABI and investigating differences between patients' and parents' perspectives. At admission in 10 rehabilitation centers, patients and parents were asked to complete the Child and Adolescent Scale of Participation (CASP; score 0-100; lower score = more restrictions) and injury/patient/family-related questions. CASP scores were categorized (full/somewhat-limited/limited/very-limited participation). Patient/parent-reported outcomes were compared using the Wilcoxon signed-rank test. 223 patients and 245 parents participated (209 paired-samples). Median patients' age was 14 years (IQR; 11-16), 135 were female (52%), 195 had traumatic brain injury (75%). The median CASP score reported by patients was 82.5 (IQR: 67.5-90) and by parents 91.3 (IQR: 80.0-97.5) (difference = p < 0.05). The score of 58 patients (26%) and 25 parents (10%) was classified as 'very-limited'. Twenty-six percent of children and young adults referred for rehabilitation after ABI had "very-limited" participation. Overall, parents rated their child's participation better than patients themselves. Quantifying participation restrictions after ABI and considering both perspectives is important for outpatient rehabilitation treatment.

Fatigue, Participation and Quality of Life in Adolescents and Young Adults with Acquired Brain Injury in an Outpatient Rehabilitation Cohort.

PURPOSE: To study the association between fatigue and participation and QoL after acquired brain injury (ABI) in adolescents and young adults (AYAs). MATERIALS & METHODS: Cross-sectional study with AYAs aged 14-25 years, diagnosed with ABI. The PedsQL™ Multidimensional Fatigue Scale, Child & Adolescent Scale of Participation, and PedsQL™4.0 Generic Core Scales were administered. RESULTS: Sixty-four AYAs participated in the study, 47 with traumatic brain injury (TBI). Median age at admission was 17.6 yrs, 0.8 yrs since injury. High levels of fatigue (median 44.4 (IQR 34.7, 59.7)), limited participation (median 82.5 (IQR 68.8, 92.3)), and diminished QoL (median 63.0 (IQR 47.8, 78.3)) were reported. More fatigue was significantly associated with more participation restrictions (ß 0.64, 95%CI 0.44, 0.85) and diminished QoL (ß 0.87, 95%CI 0.72, 1.02). CONCLUSIONS: AYAs with ABI reported high levels of fatigue, limited participation and diminished quality of life with a significant association between fatigue and both participation and QoL. Targeting fatigue in rehabilitation treatment could potentially improve participation and QoL.

Physical activity, fatigue and sleep quality at least 6 months after mild traumatic brain injury in adolescents and young adults: A comparison with orthopedic injury controls.

OBJECTIVES: To compare physical activity (PA), fatigue and sleep quality in adolescents and young adults (AYAs) after mild TBI (mTBI) to persons of similar age after orthopedic injury (OI) on the longer term. SETTING: Follow-up at least 6 months after visiting the emergency department of one of 2 general hospitals. PARTICIPANTS: Forty-nine patients aged 12-25 years (mean 18.4 years), diagnosed with mTBI and 54 patients aged 12-25 years (mean 15.8 years) with OI. DESIGN: Cross-sectional electronic survey study. MAIN OUTCOME MEASURES: The Activity Questionnaire for Adults and Adolescents with results dichotomized for meeting/not meeting Dutch Health Enhancing PA recommendations (D-HEPA), the Checklist Individual Strength (range 20-140, low-high) measuring fatigue, and the Pittsburgh Sleep Quality Index (range 0-21, high-low) measuring sleep quality were administered. RESULTS: Patients with mTBI less frequently met D-HEPA recommendations than patients with OI (49% vs. 70%; OR 2.87, 95%CI 1.07, 7.72) and reported more concentration-related fatigue problems (mean 19.1 (SD 8.0), mean 13.9 (SD 7.8), respectively; ß 3.98, 95%CI 0.39, 7.56), after adjusting for potential confounders, sex, BMI, age and time since injury. No differences were found in sleep quality. CONCLUSIONS: Identifying symptoms and limitations in activities is important after mTBI so that rehabiliation treatment can be initiated. Whether physical activity or fatigue is the best target for treatment remains to be established.

Neurological outcome in children and youth with acquired brain injury 2-year post-injury.

OBJECTIVE: To determine neurological outcome in children and youth with acquired brain injury (ABI) and explore associated factors. DESIGN: Cross-sectional study, two-years post-injury. PATIENTS: Hospital-based sample (n=112) aged 6-22 years. METHODS: Neurological outcome and participation were assessed with a multidimensional neurological examination and the Child and Adolescent Scale of Participation. Logistic regression analyses were used to explore the relationships. RESULTS: Both sensorimotor and cognitive deficits were found in 30-31%, language deficits and behavioural deficits in 10-17%. Non-traumatic injury had a negative impact on neurological outcome, specifically regarding sensorimotor and language deficits. Lower education level showed a significantly poorer neurological outcome. High levels of age-expected participation were reported, with a significant relation between deficits and participation restrictions, especially at school. CONCLUSION: One out of three have a poor neurological outcome, related to type of injury and lower level of education. The amount of deficits is associated with participation restrictions.

Fatigue and its relationship with physical activity in adolescents and young adults with traumatic brain injury: a cross-sectional study.

BACKGROUND: Physical activity (PA) in patients with traumatic brain injury (TBI) may be impaired leading to secondary health issues and limitations in participation. AIM: This study aims to determine the level of PA and its determinants in adolescents and young adults with TBI. DESIGN: Cross-sectional survey study. SETTING: Outpatient clinic of a rehabilitation center. POPULATION: Discharged patients aged 12-39 years with a diagnosis of TBI >6 months treated in the rehabilitation center between 2009-2012. METHODS: The Activity Questionnaire for Adults and Adolescents (AQuAA) measuring PA, with results dichotomized for meeting or not meeting Dutch recommendations for health-enhancing physical activity (D-HEPA) and the Checklist Individual Strength questionnaire (CIS; range 20-140, higher scores represent higher levels of fatigue), measuring fatigue, were administered. RESULTS: Fifty (47%) of the 107 invited patients completed the questionnaire. Mean age was 25.0±7.2 years and 22 (44%) were male. Eighteen (36%) had a mild injury, 13 (26%) a moderate injury and 19 (38%) a severe injury. Median time spent on moderate-vigorous physical activity was 518 minutes/week (IQR 236-1725) (males performing significantly more minutes on moderate-vigorous activity than women) and on sedentary activity 2728 minutes/week (IQR 1637-3994). Thirty-two (64%) participants met the D-HEPA. According to the CIS, 19 participants (38%) were severely fatigued. Both the CIS total score and the subscales motivation and physical activity were associated with meeting the D-HEPA. CONCLUSIONS: The proportion of individuals with TBI meeting D-HEPA was similar to the general population, with the PA level being associated with self-reported fatigue. CLINICAL REHABILITATION IMPACT: Physical activity programs are continuously being developed to increase the percentage of individuals meeting public health recommendations for PA; when developing programs for individuals with TBI extra consideration should be taken for the presence of fatigue. As in the general population, females with TBI are less active, PA programs should probably consider gender differences in their development.

Psychometric evaluation of the Dutch language version of the Child and Family Follow-up Survey.

AIM: The Child and Family Follow-up Survey (CFFS) is developed to monitor long-term outcomes of children and youth with acquired brain injury (ABI). The aim of this study was to translate and adapt it into the Dutch language and to evaluate its reliability and validity. METHODS: The CFFS includes the Child and Adolescent Scale of Participation (CASP), the Child and Adolescent Factors Inventory (CAFI) and the Child and Adolescent Scale of Environment (CASE). The CFFS was translated into Dutch following international guidelines and adapted. The internal consistency, validity and test-retest reliability were examined among two groups of patients (n = 140 and n = 27) in the age of 5-22 years with ABI and their parents. RESULTS: The translation and adaptation resulted in the CFFS-DLV, Dutch language version. The CASP-DLV, CAFI-DLV and CASE-DLV had a good internal consistency, with Cronbach's alpha being 0.95, 0.89 and 0.83, respectively. There were statistically significant correlations among the three CFFS subscale scores. These scores were also significantly correlated with the total scores of the Pediatric Quality of Life Inventory (PedsQL, parent) and the Pediatric Stroke Outcome Measure, but not with the domain scores of the Children's Assessment of Participation and Enjoyment (CAPE). The test-retest reliability was good to moderate, with the intra-class correlation coefficients being 0.90 for the CASP-DLV, 0.95 for the CAFI-DLV and 0.81 for the CASE-DLV. CONCLUSIONS: The CFFS-DLV, as translation and adaptation of the CFFS into Dutch, proved to be a promising instrument to measure long-term outcomes of children and youth with ABI. Further research is needed to examine its responsiveness to change and potential in other patient groups.

Focus on fatigue amongst young adults with spastic cerebral palsy.

BACKGROUND: This study aimed to assess fatigue amongst young adults with spastic cerebral palsy (CP), to determine subgroups at risk for fatigue and to explore the relationship between fatigue and cardiopulmonary fitness and daily physical activity level. PARTICIPANTS: Young adults with spastic CP, Gross Motor Function Classification System (GMFCS) levels I to III, aged 16 to 24 years. METHODS: Fatigue (Fatigue Severity Scale) and self-reported daily physical activity (Physical Activity Scale for Individuals with Physical Disabilities) were assessed for 56 participants using questionnaires. Daily physical activity was objectively measured using accelerometry (Vitamove system) over 72 hours. Progressive maximal aerobic cycling was used to measure cardiopulmonary fitness. RESULTS: The mean Fatigue Severity Scale (FSS) score was 3.7 (SD 1.4). Forty percent of participants were fatigued, including 12.5% who were severely fatigued. Participants with bilateral CP (FSS = 4.2 (SD 1.4)) were more fatigued compared to those with unilateral CP (FSS = 3.1 (SD 1.3)) (p < 0.01). Levels of cardiopulmonary fitness (2.4 L/min (SD 0.8)) and daily physical activity (8.5% (SD 3.0)) were not significantly related to fatigue (respectively p = 0.10 and p = 0.55), although for cardiopulmonary fitness a trend was found. CONCLUSIONS: Fatigue is already present at a relatively young age amongst adults with CP, and CP subtype is a determinant of fatigue. We did not find significant evidence for a cross-sectional relation of fatigue with cardiopulmonary fitness or daily physical activity. TRIAL REGISTRATION: Nederland's trial register: NTR1785.