Journal of Head Trauma Rehabilitation:
Frequency and Quality of Return to Study Following Traumatic Brain Injury
Willmott, Catherine PhD; Ponsford, Jennie PhD; Downing, Marina PhD; Carty, Meagan BAS (Hons)
Section Editor(s): Caplan, Bruce PhD, ABPP; Bogner, Jennifer PhD, ABPP
Monash Psychology Centre, School of Psychology & Psychiatry (Drs Willmott, Ponsford, and Downing), Monash-Epworth Rehabilitation Research Centre (Drs Willmott, Ponsford, and Downing and Ms Carty), and National Trauma Research Institute (Dr Ponsford), Monash University, Victoria, Australia.
Corresponding Author: Catherine Willmott, PhD, Monash Psychology Centre, School of Psychology & Psychiatry, Monash University, Bldg 1/270 Ferntree Gully Rd, Notting Hill Vic 3168, Australia. ( catherine.willmott@.monash.edu).
This project was supported by the Victorian Government Transport Accident Commission and the Institute for Safety Compensation and Recovery Research. The authors thank Professor John Olver, Dr Michael Ponsford, and Dr Rose Acher, who conducted the follow-up interviews with participants. The authors also thank all participants involved in this project, who gave so generously of their time.
The authors declare no conflicts of interest.
To examine the frequency and experience of return to secondary or tertiary study over a 10-year period following traumatic brain injury (TBI).
A group of 295 students with moderate to severe TBI followed prospectively.
Epworth HealthCare TBI outpatient rehabilitation program follow-up clinic 1 to 10 years postinjury.
Main Outcome Measures:
Frequency of return to study. Also, for a subset, changes in course enrollment, utilization of additional educational supports, and experience of return to study postinjury.
Of those studying preinjury, 295 attended the follow-up clinic appointments, with 167 (56%) having returned to study. Those who did not return to study had significantly longer posttraumatic amnesia duration. The cross-sectional follow-up revealed that 60.4% were studying at 1 year postinjury, 37.5% at 2 years postinjury, 50.0% at 3 years postinjury, 31.1% at 5 years postinjury, and 2.0% at 10 years postinjury. Many had migrated into employment. A subsample of 95 participants reported on their educational experience. Of those, 28.7% changed their course enrollment from full-time to part-time. While supports such as tuition and special consideration were greatly increased postinjury, students reported the proportion of subjects passed of 79.0%. However, they experienced cognitive difficulties and fatigue and felt less satisfied with their studies.
Return to study was relatively successful; however, this was associated with the experience of fatigue and need for far greater effort, assistance and reduced study hours, and somewhat less overall satisfaction.
TRAUMATIC BRAIN INJURY (TBI) is a leading cause of disability in young people. The Australian Institute of Health and Welfare has reported a rate of 107 TBIs per 100 000 population in Australia.1,2 Other industrialized nations report similar rates.3 The highest overall incidence of TBI is in the age group from 15 to 24 years.4 Given the predominance of adolescents and young adults sustaining TBI, it is essential that outcomes regarding return to study following injury are documented as a basis for developing guidelines for rehabilitation professionals, teachers/educators, and families.
A TBI is known to result in numerous cognitive, behavioral, and emotional sequelae, which are likely to impact upon a student's ability to return to study following injury. Difficulties sustaining attention, performing 2 or more tasks simultaneously, ignoring distractions, processing information at an adequate rate, and learning and recalling new material are among the most common changes reported by individuals with TBI, close others, and rehabilitation therapists.5–7 A number of studies have found that individuals with TBI are slower to process information.8–10 Deficits in the strategic control of attention occur under conditions of increased task complexity, time pressure, or high working memory load.11–13 Most commonly, memory problems manifest as a difficulty in learning and retaining new material since the time of injury and can be associated with storage and/or retrieval problems.14 Implicit memory is often relatively spared.15 Patients with frontal lobe pathology have been shown to incur more perseverative errors,16 demonstrate less efficient strategy application,17 and have more difficulty than controls in completing complex tasks requiring multiple activities.18 Concrete thinking and inflexibility, and a lack of initiative, are common problems.19 The cognitive and behavioral sequelae outlined earlier, along with symptoms of anxiety and depression, have been shown to have a significant impact on return to previous lifestyle following injury,20–22 and a number of studies have shown that return to employment is also compromised.23,24 The need for long-term follow-up of students with TBI over various transition phases is particularly important due to what Tate and colleagues25 refer to as the “neuropsychological lag,” in which deficits become more apparent over time, as the student faces more complex life situations and is expected to manage these situations more independently.
While there are a number of studies documenting academic outcomes following injury in children,26,27 very few studies have investigated return to study following TBI in adolescents and adults. This is important, as significant differences exist between studying at a primary and early secondary level and studying at a later secondary and tertiary level. The latter is generally less structured, requires significantly greater self-directed learning and understanding of more complex theoretical concepts, is more likely to involve a number of different educators, and requires less peer support.
Previous studies have indicated that while as many as 74% to 85% of those injured in high school return to study,25,28,29 young adults with TBI are enrolled in post–secondary education at lower rates than the general population.30 Being female, of older age at injury, and from a higher socioeconomic status (SES) has been found to be associated with a greater likelihood of return to study.31 Severity of injury has not been found to be a significant predictor of academic outcome.31,32
Studies have reported various accommodations made to the educational programs for individuals with TBI. The most commonly reported changes and supports have included reduction from full-time to part-time, provision of tuition, and special consideration.25,28,31 Some had also changed the course in which they were previously enrolled. Somewhat surprisingly in the studies by Kennedy and colleagues33 and Todis and Glang,29 only half of the participants with TBI used Disability Support Services within their education facility. The most commonly cited reasons for not doing so were the stigma attached with such services or that the students felt that they did not need the extra support. Limitation in awareness of difficulties in relation to ability to study postinjury has also been flagged by Tate and colleagues.25
Student self-reports have indicated that extraordinary effort is required for academic achievement in the educational setting28,29,34 and that being highly motivated, determined, and flexible were also associated with success in returning to study after injury.29 The impact of other psychosocial factors, in particular the role of the student's sense of self, have recently been highlighted as significant contributing factors to the student's perspective of returning to study.34,35
The overall conclusions drawn from the relatively few published investigations of return to study are somewhat constrained by small subject numbers and the lack of prospective, longitudinal outcome data. A number of investigations were reports of up to 3 individual cases, and other than the study by Todis et al,31 (n = 89), none had sample sizes of more than 50 participants with TBI. The studies by Tate and colleagues25 and Todis et al31 were the only 2 studies to follow students up beyond 3 years postinjury, and the latter is the sole prospective study conducted to date. The present study aimed to prospectively document the frequency and experience of return to secondary and tertiary study over a 10-year period following TBI. Given the comprehensive rehabilitation program and additional educational supports that these participants were offered, funded by the third party insurer, it was anticipated that rates of return to study would be relatively high in this sample. It was expected that rates of return to study would decrease over follow-up time points, with course completions and transition into employment. Given the severity of the TBI sustained by these participants, and the enduring nature of TBI-related cognitive deficits, it was hypothesized that these participants would be experiencing difficulties with regard to returning to study and that the use of additional educational supports such as individual tutoring and special consideration would be increased greatly from those being used preinjury.
Participants were 295 adolescents and young adults who were admitted to Epworth HealthCare Rehabilitation, for rehabilitation after sustaining a TBI, in most cases after a motor vehicle accident. This hospital treats approximately 30% to 50% of all moderate to severe TBI patients in the context of the Transport Accident Commission compensation system administered by the Victorian Government, which provides funding for all hospital and rehabilitation costs and funding for continuing supports including integration aides or special tuition for students, regardless of fault or SES. As part of a prospective Longitudinal Head Injury Outcome Study, all patients with TBI are routinely invited to attend a follow-up clinic at 1, 2, 3, 5, and 10 years postinjury. These 295 participants were all studying prior to injury and attended follow-up clinic appointments between 1985 and 2011. All participants gave written, informed consent, and the study was approved by the ethics committee of Epworth HealthCare and Monash University.
Procedures and measures
Following consent, participants with TBI (n = 295) completed the Structured Outcome Questionnaire (SOQ)36 in person with their consulting doctor or a member of the research team. They responded to questions regarding their current vocational status (ie, whether they were studying, working, or neither). These data were used to document the frequency of return to study following TBI. The SOQ is a structured outcome questionnaire in which participants are asked to indicate whether they had, since the injury, experienced changes in the domains of cognitive functioning, behavior, and emotional state as outlined in the items listed in Table 4. There are 3 possible responses: (1) “No”; (2) “Yes”; and (3) “Yes, and interferes with daily activities.” For the purposes of this study, the last 2 categories of “Yes” response were combined. The authors report good interrater reliability for this questionnaire (overall mean k coefficient = 0.81) and good agreement between the individuals with brain injury and their relative's perspectives on the injured individual's functional changes in previous studies.
The detailed questions pertaining to the Experience of Return to Study questionnaire were added to the follow-up clinic interview with the treating physician in 2005 and thus only those participants recruited from 2005 to 2011 responded to these questions. As can be seen in Figure 1, 295 participants came to the follow-up clinic, of those 167 had returned to study, and 95 of those 167 completed the detailed Experience of Return to Study questionnaire outlined in the Appendix. They were also asked about changes to enrollment and other accommodations to their course, along with supports received. Some responses were indicated as Yes/No, and others were rated on a 4-point Likert scale.
The following demographic and injury-related information was gathered from interview or with permission from participants' hospital medical files: age, gender, years of education, preinjury vocational status (for the purposes of this study, “preinjury vocational status” captured whether or not patients were students prior to their injury; if they were students and working part-time preinjury, they were included as “students” for the purposes of this study), date and mechanism of injury, Glasgow Coma Scale (GCS) score,37 and the duration of posttraumatic amnesia (PTA), measured prospectively using the Westmead PTA Scale.38 Glasgow Outcome Scale–Extended39 total score was also completed as a measure of functional outcome.
All analyses were conducted with SPSS (version 20). Frequency distributions were computed for each variable. For all items of the Experience of Return to Study questionnaire, there were between 0% and 4% of missing cases, with the exception of the question “How much effort do you need to make in order to pass your course?” which was associated with 11.6% missing data. Valid percentages were therefore reported. Proportions were compared using χ2 or Mann-Whitney U analyses, depending on the variable. The α level used was .05, and actual P values were reported.
Frequency of return to study
There were 295 students who were studying prior to injury and attended follow-up up to 10 years postinjury (but did not necessarily complete the detailed education questions, which were added to the follow-up questionnaire at a later stage). Background and injury demographics are outlined in Table 1. This group represents 71.60% of the total number of students treated at Epworth HealthCare during the study period (N = 412, includes 117 students who did not attend follow-up in the same time frame; ie, date of injury from 1985 to 2011; see Fig 1). These 295 students were compared with the 117 students who did not attend follow-up. They did not differ significantly in terms of gender (χ21, 412 = 0.59, P = .44), age at injury (t189 = 1.74, P = .08), length of PTA (t396 = 0.01, P = .99), GCS scores (t336 = 1.51, P = .13), mechanism of injury (χ28, 405 = 8.88, P = .35), or insurance type (χ23, 376 = 1.82, P = .61).
A total of 638 follow-up assessments were completed by the 295 students attending follow-up, with 176 at 1 year, 174 at 2 years, 116 at 3 years, 122 at 5 years, and 50 at 10 years. The follow-up clinic cross-sectional analysis indicates that there was a decline in the number of students studying with increasing time postinjury (see Table 2). This change was, however, in part due to a migration into employment (see Table 2). Of the 3- and 5-year postinjury cohorts, 82.7% and 71.6%, respectively, were studying or employed. Only one member of the 10-year cohort was still studying, and 54% were employed. However, this apparent decrease in vocational activity needs to be viewed in light of the more severe injuries in this 10-year postinjury subgroup, whose mean PTA was 46.3 days, than those of 3- and 5-year groups, whose PTA averaged 27.4 and 33.9 days, respectively.
Of the 295 who attended follow-up, 167 were students at any of the follow-up time points (56.6%). There were 127 (43.1%) who never returned to study at any of the completed follow-ups. (Note: Postinjury student/employment status was missing for 1 participant.) The 167 students were compared with the 127 students. They did not differ significantly in terms of gender (χ21, 294 = 0.80, P = .37), age at injury (t292 = 1.30, P = .20), GCS scores (t247 = 1.55, P = .12), mechanism of injury (χ27, 291 = 11.42, P = .12), or insurance type (χ23, 274 = 2.20, P = .53). However, those who never returned to study had significantly longer PTA (37.68 days, SD = 44.27, vs 23.94 days, SD = 23.92; t177 = −3.12, P = .002).
Experience of return to study
Of the 167 who returned to study, 95 responded to questions about the quality of their return to study following injury, with 56 responses given at 1 year postinjury, 19 at 2 years postinjury, 16 at 3 years postinjury, and 4 at 5 years postinjury. The 95 students in this sample were predominantly male, with a mean age of 19.54 years at injury, who had sustained moderate-severe injuries according to GCS scores and PTA duration (see Table 3). A total of 83.7% had an abnormal computed tomographic brain scan. The majority had a Glasgow Outcome Scale–Extended total score of 6 or above, indicating that the majority of students were classified as having “upper moderate disability,” “lower good recovery,” or “good recovery.” Mechanism of injury was predominantly motor vehicle accident, followed by pedestrian hit by a car and other categories. The majority of participants (92.6%) were fully compensable for lifetime medical and like expenses through the Transport Accident Commission compensation system.
Statistical analysis revealed that the 95 participants of this group were significantly older at time of injury (t292 = −2.40, P = .02), had higher GCS scores (t164.2 = −2.87, P = .005), and had fewer days of PTA (t267.5 = 4.23, P < .001) than those of 295 participants the group who did not participate in the study, as they were recruited prior to 2005 (n = 72) or had not returned to study (n = 127). No difference was found with regard to insurance type or gender.
Course enrollment changes
As would be expected, there was a decline in secondary studies from preinjury (41.1%) to postinjury (28.4%), and a rise in all categories of tertiary study, as secondary students completed school and moved into the tertiary education sector. Postinjury tertiary study consisted of the following: an undergraduate university degree (38.9%), a postgraduate university degree (8.4%), TAFE studies (21.1%), studies at a private college (1.1%), and other studies (2.1%).
A large number of students changed their course enrollment postinjury (28.7%). Many students had moved from full-time to part-time study following their injury. Prior to injury, 85.7% of students were studying full-time compared with 64.9% following the TBI. This was matched with a concomitant increase in part-time study, from 14.3% prior to injury to 35.1% following the injury. Of those studying part-time, 87.5% were undertaking 50% or less of the normal course workload. There was a significant increase in applications for special consideration from preinjury (5.4%) to postinjury (62.8%). There was also an increase in the number of students receiving individual tuition, from 7.5% prior to injury to 43% following injury. However, most students passed their studies. There was only a slight reduction in the percentage of subjects passed, from 87.5% prior to injury down to 79% following the injury. Nearly half (44.2%) planned to seek work after completing their studies, and 43.2% reported wanting to continue with further study.
Reported difficulties associated with study
With regard to quality of their study experience, a large proportion of students reported that they were having moderate difficulty keeping up with the workload (44.6%), learning new information (42.4%), and getting fatigued (46.5%). Moreover, a number of students stated that they experienced an extreme degree of fatigue (44.6%). Chi-square analysis indicated that the report of these difficulties was consistent across years postinjury, except for fatigue (χ29, 92 = 26.55, P = .002). That is, proportionally, more of the individuals at 5 years postinjury were noting moderate or extreme degrees of fatigue. However, there was no significant difference between years 1 and 2, when greatest difference would be anticipated, for difficulty keeping up with the workload (χ23, 72 = 1.75, P = .63), difficulty learning new information (χ23, 72 = 1.60, P = .66), or getting more fatigued (χ23, 72 = 3.11, P = .38). Participants with TBI described needing to put more effort into their studies in order to pass their course than that before their accident. Specifically, before their injury, only 3.3% of students reported needing to put in extreme effort to pass their course, which increased to 34.5% postinjury. Students with TBI were much less likely to report being very satisfied with their studies (from 50.0% preinjury to 23.4% postinjury) and more likely to be dissatisfied.
Cognitive, behavioral, and emotional changes
Outcomes on the SOQ indicating self-reported changes in cognition, behavior, and emotions postinjury are outlined in Table 4. As can be seen, between 80.9% and 24.5% of participants reported changes on different items. The most commonly reported problems were memory (80.9%) and concentration (69.2%) difficulties, along with irritability (61.7%) and fatigue (61.7%). Self-centeredness (24.5%) and social isolation (24.5%) were the least commonly reported changes.
Frequency of return to study
This sample of 295 participants with a history of moderate-severe TBI would appear to be a representative sample of all patients admitted to Epworth HealthCare over the specified time frame who were studying prior to injury, as there were no significant differences between the sample participants who attended follow-up and those who did not in terms of gender, age at injury, insurance type, or severity of injury based on GCS score and PTA duration. At first glance, the 295 participants of this group appear to have had relative success in returning to secondary or tertiary study. Previous investigations report varying rates of return to study ranging from 46% (Ip et al32) to 85% (Stewart-Scott and Douglas28). None of these studies were, however, conducted prospectively and were potentially biased by the fact that those who had successfully returned to study may have been more likely to agree to participate. The overall rate of return to study in the present study was 56%. As would be anticipated, there was a decline in rates of study over the 10-year period, largely due to a migration into employment, consistent with findings by Todis et al.31 The peak percentage of those studying or employed was reached at 3 years postinjury (82.7%). This included a significant proportion of participants who were still studying. The proportion of those studying declined steadily over time, and while many did move into employment, it was apparent that not all of those returning to study moved into open employment. Difficulty finding or maintaining occupational roles over time is a commonly reported finding in TBI literature.6,23
The comparison of those who did and those who did not return to study postinjury revealed the only significant difference to be that those who were unable to return to study had significantly longer PTA duration (mean = 37.68 days) than those who returned to study (mean = 23.94 days). The duration of PTA has previously been documented as a more reliable predictor of outcome than GCS score,40,41 and the current findings support this premise. It is likely that those with more severe injuries had complicating factors, such as physical deficits, that may have also compromised their ability to return to study. Gender and age at injury were not significantly different between those who did and those who did not return to study. However, we cannot rule out that other factors, not related to the TBI, may have resulted in them not participating in education following their injuries.
Experience of return to study
The 95 participants of this subsample represented a fairly standard TBI sample, predominantly male, with an average age of 19.54 years at injury. While the 1-year difference in age at injury between this group and those (n = 295) who did not complete the detailed Experience of Return to Study questionnaire (mean age at injury = 18.31 (SD = 3.40) was statistically significant, it is not clinically significant, as such a difference would not be expected to result in differential outcomes. The group differences in injury severity were consistent with the fact that these participants were drawn from the group that had returned to study, who tended to have shorter PTA.
As expected, there was an increase in rates of tertiary students over time, as secondary students complete their schooling and move into the tertiary education sector. Considerable adaptations had been made to study plans following injury similar to those outlined in other studies.25,28 Of the 95 participants, 28.7% had changed their course enrollment. Similarly, there was a substantial drop in those studying full-time from pre- to postinjury. In addition, many of those studying part-time (87.5%) were undertaking 50% or less than the normal workload. Many had applied for special consideration (62.8%). This encompassed a number of different accommodations for students, including extra reading and writing times in examinations, opportunity to sit the examination in a separate room and to take rest breaks, provision of a scribe, allowance for “open-book” examination format or only multiple-choice examinations, and also included modifications to day-to-day work requirements and extensions for submission of assignments. The special consideration was individually tailored to the student, and eligibility usually required supporting documentation from an allied health therapist such as a speech pathologist or neuropsychologist. Forty-three percent received individual tuition. Reassuringly, there was only a slight drop in the percentage of subjects passed, which attests to the value of provision of this level of support and adjustments. The advantage for this sample was that 92.6% were covered by the insurance scheme, a government body required to fund costs such as tuition and allied health services to assist with return to study. While the lack of a comparison group precludes conclusions regarding the specific advantages conferred by this system of care, it is likely that the return to study outcomes were maximized by the provision of these services. In the study by Todis et al,31 higher SES was associated with likelihood of being enrolled in study, and this may have represented the fact that individuals and families in this demographic had sufficient funds to provide for these educational supports, whereas those from lower SES backgrounds are unable to fund such interventions in the absence of insurance funding.
Nevertheless, despite these relatively good outcomes, study postinjury was associated with significant fatigue, far greater need for effort, and less satisfaction with studies than their preinjury study experience. The frequency of report of these problems was stable over time. There was no reduction in difficulties experienced with studying from 1 to 2 years postinjury, providing evidence of the enduring nature of TBI-related deficits. The present study relied on self-report; however, other studies in this field25 have suggested that the report of difficulties experienced by students is even higher when rated by parents or educators.
The 2 most frequently endorsed cognitive difficulties experienced by these students were difficulties with memory and concentration, and these are often-reported TBI sequelae.42 Specifically, learning of new material (both verbal and nonverbal) is slower and imperfect. These skills are absolutely crucial factors in the student's capacity to acquire and assimilate new information in a secondary or tertiary education environment43 and provide a context for the report of significant fatigue and needing to apply extreme effort for academic achievement. Given this self-report of problems, it is a remarkable achievement that on objective measures of success (eg, passing most subjects), the majority did well. This provides justification for insurance agencies to continue to provide financial support for rehabilitation and allied health therapy interventions, integration aides, and special tuition. Few participants endorsed “social isolation” as a change postinjury, and the “success” of return to education following TBI may confer additional advantages, such as a social network and contact with peers. This is extremely important in the context of often-reported problems with maintaining or establishing friendships following injury.44
The most substantial limitation of the present study is that the detailed “Experience of Return to Study” questions had only been administered to a subgroup of 95 participants, as they were introduced at a later stage of the longitudinal follow-up study. This subgroup, like the broader group that had returned to study, had shorter PTA duration than the rest of the sample. Furthermore, the reported return-to-study outcomes were cross-sectional, as data were available on less than half the sample at multiple time points. Ideally, investigation of the experience of return to study for individuals over time could be investigated with more sophisticated statistical modeling. Finally, the report of studying postinjury was reliant upon self-report. As identified by Tate and colleagues, further insights may be gained from interviewing educators and significant others, which should be incorporated in future studies.
To date, there have been very few intervention studies evaluating the success of education-based interventions for those with TBI. Case studies involving simulated college experiences and self-regulated learning programs indicate modest improvements in assignments and test grades and strategies used.45,46 Findings from a larger mentoring program are difficult to interpret, with only 54.5% of participants considered program successes.47 Clearly, there is a significant need going forward for more rigorous evaluation of the supports and interventions rehabilitation therapists put in place for students with TBI and determination of factors associated with success. A holistic approach to evaluating interventions for students is advocated by Mealings and Douglas, which not only incorporates academic achievement “but also leads to the development of realistic vocational goals, incorporates a sense of enjoyment and also fosters good social relationships.”34(p13) The complex interplay of these factors has rarely been addressed to date.
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education; outcomes; rehabilitation; study; traumatic brain injury
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