http://informahealthcare.com/bij ISSN: 0269-9052 (print), 1362-301X (electronic) Brain Inj, 2015; 29(3): 283–290 ! 2014 Informa UK Ltd. DOI: 10.3109/02699052.2014.974671

ORIGINAL ARTICLE

A longitudinal examination of positive changes in quality-of-life after traumatic brain injury Kate R. Gould1,2,3 & Jennie L. Ponsford1,2,3 Monash-Epworth Rehabilitation Research Centre, Epworth Hospital, Richmond, Victoria, Australia, 2School of Psychology and Psychiatry, Monash University, Victoria, Australia, and 3Centre of Excellence in Traumatic Brain Injury Research, National Trauma Research Institute, Alfred Hospital, Melbourne, Victoria, Australia

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1

Abstract

Keywords

Purpose: Most studies of quality-of-life (QoL) after traumatic brain injury (TBI) reveal a largely negative picture, yet some survivors show positive changes (PC). Understanding PC in QoL may assist clinicians in facilitating post-injury adjustment. This study aimed to prospectively explore changes in QoL from pre- to post-injury, identify those with PC and examine predictive and associated factors. Methods: Ninety-five participants, recruited from consecutive admissions to a rehabilitation hospital, were prospectively assessed at least once over the first 4 years post-injury. Measures of QoL, psychiatric disorders, coping style and psychosocial outcome were administered at each assessment. Results: Participants’ mean QoL was in the average range pre-injury and at follow-up. A third demonstrated PC post-injury, which tended to remain stable. PC participants tended to rate their relatives as of greater importance than other participants, but did not rate their health as high. Group membership was not predicted by pre-injury demographic or injury factors, but it was significantly associated with psychosocial and functional outcome. Conclusions: Even after a significant brain injury, some individuals show sustained improved QoL. Factors such as lack of ‘good old days’ bias and increased value placed on family may have important clinical utility.

Family, post-traumatic growth, psychiatric disorders, quality-of-life, response shift, traumatic brain injury

Introduction Traumatic brain injury (TBI) is the leading cause of disability in young people [1], with10 million people injured annually worldwide [2]. TBI often impairs an individual’s cognitive, psychological and behavioural functioning, affecting return to social, occupational and recreational roles [3]. Subjective well-being (SWB) is an important aspect of long-term outcome following injury [4], arguably more important to the individual than their functional outcome [5]. The insider’s perspective is commonly ascertained through self-report of quality-of-life (QoL), considered synonymous with SWB [6]. QoL is conceptualized as a dynamic phenomenon involving subjective appraisal of health status (e.g. mobility and mental health), well-being (e.g. life satisfaction, happiness) and objective achievements (e.g. employment, housing) [7]. Many studies have demonstrated reduced QoL after TBI [7,8]. However, there is significant variability in post-injury QoL ratings and some individuals report experiencing good QoL. Brown and Vandergoot [9] found that individuals with Correspondence: Dr. Kate Gould, Monash-Epworth Rehabilitation Research Centre, 185–187 Hoddle Street, Richmond, Victoria, Australia, 3121. Tel: +61 3 9426 8923. Fax: +61 3 9426 8925. Email: [email protected]

History Received 5 February 2014 Revised 17 August 2014 Accepted 6 October 2014 Published online 29 October 2014

greater injury severity showed higher subjective QoL decades post-injury. Kalpakjian et al. [10] found that, whilst the mean QoL score for their predominantly severe TBI sample was low average and significantly lower than non-disabled samples, nearly half the sample scored in the average or high range 5 years post-injury. These finding are inconsistent with early accounts of the negative impact of TBI on individuals [11] and have implications for the conceptualization of post-injury QoL [10]. It is important for researchers and clinicians to understand the full range of outcomes after TBI from the perspective of the injured individual, rather than focusing only on negative changes. It remains unclear why some individuals subjectively view their QoL as high after severe TBI and how that is associated with their participation in various life domains. Brown and Vandergoot [9] posited that individuals with severe TBI and reduced awareness emphasize factors maintaining their sense of continuity, rather than focusing on the contrast between pre- and post-injury life. Examination of pre-injury ratings of QoL is required to better evaluate this hypothesis. However, few studies have measured pre-injury QoL. A recent study compared pre- and post-injury QoL ratings in individuals with predominantly moderate TBI. The Schedule for Evaluation of Individual Quality of Life was

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administered to 28 people 1–10 years post-injury [5]. Participants rated current satisfaction and importance of five chosen domains and retrospectively rated their pre-injury QoL (potentially selecting different domains), to determine their current perception of previous QoL. The relative importance of domains changed pre- to post-injury; whilst work was important pre-injury, there was a greater focus on family and well-being post-injury. This may have reflected natural progression through developmental stages (e.g. marriage, having children) or a re-evaluation of priorities as a direct result of the injury. Although group means did not differ significantly in terms of current and retrospective QoL, there were substantial individual differences. Individuals showing a positive change in QoL reported fewer depressive symptoms and better social functioning. Changes in importance ratings for those with good QoL were not examined. Participants showing change in either direction showed greater functional disability on the Glasgow Outcome Scale–Extended. Rather than attributing these changes to reduced awareness, the authors suggested that there may have been a response shift whereby ‘some participants re-focused what is important in order to maintain or even improve their perceived QoL’ ([5], p. 840). These findings are consistent with Brown and Vandergoot’s [9] earlier study. Response shift has been defined as a change in the meaning of one’s self-evaluation of QoL as a result of adjusting one’s internal standards of measurement (i.e. re-calibration), values (i.e. re-prioritization) or definition of the construct (i.e. re-conceptualization) [12,13]. People may change the way they evaluate their QoL in response to major changes in life experience [14]. Response shift may explain the somewhat paradoxical differences between subjective and objective measures of outcome after TBI. Whilst Blair et al. [5] identified several features of positive changes in QoL following TBI, their use of retrospective pre-injury QoL ratings conducted up to 10 years post-injury may be confounded by a retrospective response shift (re-interpreting who they think they used to be) as well as the impact of memory and executive dysfunction due to TBI. A prospective approach, which records pre-injury ratings soon after injury, would minimize potential distortions and clarify the trajectory of emergence of these positive changes [15]. An accurate understanding of the perspective of the individual with TBI on their recovery and SWB after injury would enable clinicians to most effectively target intervention to facilitate positive adjustment. There is potentially as much to be learned from examining individuals reporting improvements in QoL post-injury as there is from those reporting negative change. The aims of the current study were, therefore, to prospectively explore changes in QoL ratings from pre- to post-injury and over the first 4 years post-injury. In particular, this study aimed to identify and characterize individuals reporting positive changes in QoL and identify whether and how these cases differed from other cases, in terms of importance ratings, demographic variables, injury severity and psychosocial outcome. Given the exploratory nature of the study and limited previous research on positive change post-injury, specific hypotheses were not generated.

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Method Procedure and participants Hospital and university ethics approvals were obtained. Potential participants were recruited from consecutive TBI admissions (August 2005 to April 2011) to a rehabilitation hospital which treats 30–50% of all head injuries in the state, in the context of a no-fault accident compensation system. Inclusion criteria were: complicated mild (i.e. post-traumatic amnesia (PTA) duration 51 day, Glasgow Coma Scale (GCS) score 13–15 and presence of intra-cranial abnormalities on neuroimaging) [16,17], moderate or severe TBI; age at injury 17–80; no previous TBI or other neurological disorder; residence in Australia post-discharge; and sufficient cognitive and English ability to complete interviews according to the treating neuropsychologist. Patients with pre-morbid psychiatric history, learning or behavioural problems were not excluded. Written informed consent was obtained. After PTA clearance, participants completed the initial assessment during inpatient admission or soon after discharge. Followup assessments were scheduled at 6, 12, 24, 36 and 48 months post-injury. Participants who completed the initial assessment and at least one follow-up assessment were included in the analysis, resulting in a sample of 95. There were 75 participants assessed at 6 months (78.9%), 74 (77.9%) at 12 months, 63 (66.3%) at 24 months, 52 (54.7%) at 36 months and 43 (45.6%) at 48 months. There were 18.9% who completed only one follow-up, 15.8% completed two, 15.8% completed three, 22.4% completed four and 27.4% completed all five follow-ups. Number of follow-ups completed was not associated with any socio-demographic or injury variables (all p40.05). Socio-demographic and injury information for participants is presented in Table I. The pre-injury psychiatric rate was similar to our previous finding [18], and not significantly different to age- and gender-adjusted Australian population lifetime psychiatric disorder rates [19]. Measures The primary measure was the Quality-of-Life Inventory (QoLI [20]), which has been used in previous studies of individuals with TBI, including Australian samples [10,21]. The QoLI has demonstrated sound reliability, internal consistency (0.77–0.89), test–re-test reliability (0.8–0.91) and criterion-related and construct validity [22]. The QoLI has 32 questions, assessing 16 life domains (e.g. health,

Table I. Socio-demographic and injury information for participants. Total (n ¼ 95) Variable Age at injury Years of education NART-IQ Duration PTA (days) GCS Gender (% male) Pre-injury psychiatric history (% present)

Mean

SD

Range

38.2 12.81 107.68 20.22 9.14 78.9% 56.8%

16.40 3.08 6.78 20.61 4.28

17–76 7–22 89–123 1–104 3–15

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DOI: 10.3109/02699052.2014.974671

self-esteem, goals and values, money, etc.), the degree of importance of which is rated at three levels (‘Not Important’ ¼ 0, ‘Important’ ¼ 1, ‘Extremely Important’ ¼ 2) and degree of satisfaction at six levels (from ‘Very Dissatisfied’ ¼ 3 to ‘Very Satisfied’ ¼ +3). Weighted satisfaction scores are obtained by multiplying importance and satisfaction ratings. The total raw score is the average of weighted satisfaction ratings, with higher scores indicative of better QoL. Total raw scores were converted to T-scores based on normative data provided in the QoLI manual. According to the QoLI manual, T-scores of 58–77 are classified as High QoL, 43–57 Average, 37–42 Low and 0–36 Very Low. The distribution provided is not significantly different from preinjury ratings in an Australian TBI sample [21]. A difference of five between two QoLI T-scores is defined as a significant change [20]. In this study, difference scores were obtained by subtracting pre-injury T-scores from each follow-up T-score, with discrepancies of  +5 indicating significant positive change in QoL and discrepancies of  +4 indicating no or negative change. Average satisfaction and importance scores were calculated using the mean of the 16 satisfaction and importance scores, respectively. The Structured Clinical Interview for DSM Disorders– Research Version (SCID [23]), a semi-structured clinical interview, was used to diagnose DSM-IV-TR Axis I psychiatric disorders [24]. Minor modifications allowed for pre-injury and repeated assessments (see Gould et al. [18] for further details). At the initial assessment, the SCID was completed twice to obtain both current and pre-injury lifetime psychiatric disorders. Follow-up interviews captured current psychiatric disorders and those occurring in the interval since the previous assessment. Presence of at least one psychiatric disorder on the SCID at each time-point was recorded. The two sub-scales of the Coping Scale for Adults (CSA– General Form [25]) with the highest reliability in TBI [26], i.e. dealing with the problem and non-productive coping, were administered at each assessment. The CSA collected at the initial assessment documented pre-injury coping style. Psychosocial outcome was assessed using two measures developed specifically for use in TBI populations. The Glasgow Outcome Scale–Extended (GOS-E) is an 8-point scale, which describes overall function relative to pre-injury [27,28]. In this study, the responses by the individual with TBI were used to guide the researchers’ ratings. The Sydney Psychosocial Reintegration Scale–Form A (SPRS) consists of 12 statements completed via self-report, with four items corresponding to the three domains of occupational activities (OA), inter-personal relationships (IR) and independent living skills (LS [29]). The statements relate to change because of the injury and are rated on a 7-point scale, with higher scores indicative of better psychosocial re-integration. The total score is calculated by summing responses to all items. A semi-structured interview was employed to obtain participant’s demographic information at each assessment. The National Adult Reading Test (NART [30]) (a valid measure in TBI populations [31]), was administered once and provided an estimate of pre-morbid intelligence.

285

Analyses Descriptive analyses were performed to determine sociodemographic and injury information for participants, QoLI T-scores, importance ratings and satisfaction ratings. Mean importance ratings for each domain were ranked at each time point and visually inspected to determine trends over time. T-scores at each follow-up assessment were compared with pre-injury T-scores. Changes of  5 were considered significant [20]. Individuals with significant positive change in QoLI on at least one follow-up, indicating better QoLI post-injury compared to pre-injury, were classified in the Positive Change group (PC), with the remainder in the No Positive Change (NPC) group. Descriptive information was determined for the two groups. Significance was determined using chi-square and Student’s t-tests and analyzed using SPSS (Windows, Version 20). Alpha was adjusted to 0.01 to accommodate multiple comparisons.

Results QoLI scores Descriptive information for QoLI T-scores, importance ratings and satisfaction ratings at each assessment is presented in Table II. Mean QoLI T-scores for the total group were in the Average range at pre-injury and all follow-up assessments. A large range in T-scores was observed at each assessment. On average, participants rated life areas as Important to Extremely Important and were A Little to Somewhat Satisfied. Figure 1 shows the classification of QoLI T-scores at preand post-injury time points. At the pre-injury assessment, approximately half (52.6%) rated their QoL in the Average range, 33.7% were in the High range, 5.3% were in the Low range and 8.4% were in the Very Low range. At follow-up time points, the majority continued to report QoL in the Average range, which varied between 43.8–61.3%. The proportion of participants reporting Very

Table II. Descriptive information for the QoLI T-scores, importance ratings and satisfaction ratings at each assessment. 6 12 24 36 48 Pre-injury Months Months Months Months Months n 95 75 73 63 T-score Mean 52.31 47.68 46.59 46.05 Median 53.00 48.00 47.00 44.00 SD 10.08 10.44 14.11 11.72 Minimum 12.00 18.00 13.00 18.00 Maximum 71.00 72.00 75.00 71.00 Average importance rating (range 0–2) Mean 1.32 1.35 1.38 1.34 Median 1.31 1.36 1.38 1.38 SD 0.29 0.29 0.31 0.30 Minimum 0.63 0.75 0.69 0.50 Maximum 2.00 1.88 1.94 2.00 Average satisfaction rating (range 3 to +3) Mean 1.96 1.64 1.49 1.46 Median 2.13 1.69 1.63 1.60 SD 0.80 0.87 1.12 0.96 Minimum 1.13 1.00 1.44 1.25 Maximum 3.00 3.00 3.00 3.00

52

43

46.50 46.50 11.40 11.00 71.00

48.65 49.00 13.27 8.00 71.00

1.32 1.31 0.33 0.56 1.88

1.36 1.38 0.30 0.88 2.00

1.56 1.75 0.95 1.13 3.00

1.72 1.94 1.01 1.53 2.94

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70.0

Figure 1. Percentage of participants with each QoLI score category across each assessment.

60.0

Percentage

50.0 40.0

Very Low Low

30.0

Average High

20.0 10.0 0.0 Pre-Injury

6 Months

12 Months

24 Months

36 Months

48 Months

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Time Point

Table III. QoLI areas of most and least importance. Pre-injury Most important 1 Friends 2 Play 3 Love; Goals/Values Least important 1 Money 2 Helping 3 Learning

6 Months

12 Months

24 Months

36 Months

48 Months

Health Goals/Values Friends

Friends Health Goals/Values

Health Friends Goals/Values

Health Friends Goals/Values

Health Self-esteem Relatives; Play

Helping; Creativity Community Money

Helping Neighbourhood; Money Learning

Helping Community Creativity

Neighbourhood Creativity Community

Helping; Creativity; Work Learning; Money; Community; Neighbourhood

Low QoL pre-injury approximately doubled at post-injury follow-up assessments. Fewer participants had High QoL in the first 3 years post-injury compared to pre-injury ratings, with improvements noted at 48 months, wherein a quarter had High QoL. Mean importance ratings for the sample at each time point were determined for each of the 16 life areas. The three areas with the highest and three areas with the lowest importance ratings are displayed in Table III. ‘Friends’ was the most important area pre-injury and emerged as highly important at all post-injury assessments except at 48 months. ‘Play’ was of high importance pre-injury and again at 48 months post-injury. ‘Love’ was important preinjury, but was not in the three most important areas at any time post-injury. ‘Goals and Values’ was considered of high importance pre- and at all time points post-injury except 48 months. ‘Health’ emerged as either the first or second most important area at all times post-injury, but was not rated as highly pre-injury. Positive change in QoLI scores There were 33 participants (34.7%) who experienced PC at least once post-injury, reflecting 18.7%, 18.9%, 15.9%, 17.3% and 25.6% of the sample at the 6, 12, 24, 36 and 48 month assessments, respectively. Figure 2 shows changes in QoLI T-score over time for the total sample and by group.

Pre-injury QoLI T-scores differed significantly between the groups, with higher pre-injury QoL observed in NPC participants (t(93) ¼ 3.26, p ¼ 0.002). This discrepancy was accounted for by both higher mean importance (t(93) ¼ 2.73, p ¼ 0.008) and higher mean satisfaction (t(93) ¼ 2.65, p ¼ 0.009) ratings by the NPC group pre-injury. This pattern was reversed at post-injury follow-ups; PC participants had significantly higher QoL T-scores at 6 months (t(73) ¼ 2.97, p ¼ 0.004), 12 months (t(71) ¼ 4.10, p50.001) and 24 months (t(61) ¼ 4.02, p50.001) post-injury. There was no significant difference in QoLI T-scores between groups at 36 months (t(50) ¼ 2.53, p ¼ 0.015) or 48 months (t(41) ¼ 2.23, p ¼ 0.031) post-injury, although these approached significance. The PC group had significantly higher average satisfaction ratings at 6 months (t(73) ¼ 3.17, p ¼ 0.002), 12 months (t(71) ¼ 3.32, p ¼ 0.001), 24 months (t(62) ¼ 3.93, p50.001) and 36 months (t(51) ¼ 3.02, p ¼ 0.004), but statistically equivalent mean importance ratings at post-injury assessments. Table IV displays the three most important areas rated by each of the groups at all assessments. The main finding from a visual inspection of Table IV was that the groups had similar importance rankings, however the PC group rated ‘Relatives’ as of high importance at 12, 24 and 48 months, whereas this was not an area of high importance in the NPC group. Weighted satisfaction scores for ‘Relatives’ were significantly higher in the PC group compared with the

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60

Figure 2. QoLI T-score at each assessment for the total sample and by group (PC ¼ Positive Change, NPC ¼ No Positive Change).

58 56 QOLI T-Score

54 52 50

PC

48

NPC

46

Total

44 42 40 Pre-injury

6 Months 12 Months 24 Months 36 Months 48 Months

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Time Point

Table IV. QoLI areas of most importance for PC and NPC groups.

PC 1 2 3 NPC 1 2 3

Pre-injury

6 Months

12 Months

24 Months

36 Months

48 Months

Play Friends Goals/Values

Goals/Values Friends Health

Friends Relatives Health

Goals/Values Friends Health Relatives

Play Health Friends

Self-esteem Health Relatives

Friends Play Love

Health Friends Goals/Values

Friends Health Love

Health Friends Goals/Values

Health Friends Goals/Values

Health Play Goals/Values

NPC group at 12 months post-injury (t(71) ¼ 3.06, p ¼ 0.003), but not at 24 months (t(61) ¼ 1.22, p ¼ 0.23) or 48 months post-injury (t(41) ¼ 1.57, p ¼ 0.12). The groups did not differ significantly in terms of proportion in a relationship or proportion living with others at 6, 12, 24 or 36 months post-injury (all p40.05). At 48 months postinjury, there were significantly more participants in the NPC group who were in a relationship (75.9%) compared with the PC group (44.4%, 2(1, 47) ¼ 4.75 p ¼ 0.03). Health was the most important area for the NPC group on four occasions, whereas the PC group rated it as second or third most important. Stability of PC group membership Individuals in the PC group in the first year post-injury tended to remain in that group at subsequent assessments, with the exception of the 36 month assessment. Of the participants with PC at 6 months, 70% remained in the group at 12 months, 66.7% at 24 months, 40% at 36 months and 66.7% at 48 months. Of the participants with PC at 12 months, 54.5% remained in the group at 24 months, 37.5% at 36 months and 83.3% at 48 months. By comparison, participants in the PC group from 24 months onwards appeared more likely to remain in that group at subsequent assessments. Of the participants with PC at 24 months, 100% remained in this group at 36 months and 80% remained at 48 months. Of the participants with PC at 36 months, 80% remained in this group at 48 months.

Predictors of positive change in QoLI There were no significant differences between the groups on any pre-injury demographic or injury severity factors, including age (t(93) ¼ 0.68, p ¼ 0.5), gender (2(1, 95) ¼ 0.001 p ¼ 0.98), years of education (t(88) ¼ 1.49, p ¼ 0.14), IQ (t(70) ¼ 0.28, p ¼ 0.78), accommodation status (2(1, 88) ¼ 0.17 p ¼ 0.68), employment status (2(1, 84) ¼ 2.24 p ¼ 0.13), pre-injury productive coping style (t(92) ¼ 0.55, p ¼ 0.58), pre-injury non-productive coping style (t(92) ¼ 0.73, p ¼ 0.47), pre-injury psychiatric history (2(1, 95) ¼ 0.01, p ¼ 0.92), pre-injury counselling (2(1, 75) ¼ 0.43, p ¼ 0.51) or PTA duration (t(82) ¼ 0.99, p ¼ 0.3). Pre-injury relationship status approached significance (2(1, 78) ¼ 3.31 p ¼ 0.07), with only 41.9% of participants in the PC group in a relationship compared with 62.1% in the NPC group. Relationship between positive change in QoLI and post-injury outcome variables Outcome on the GOS-E was significantly better for the PC group compared to the NPC group at 12 months (t(72) ¼ 3.79, p50.001) and 24 months post-injury (t(62) ¼ 2.59, p ¼ 0.01). At both time points, the NPC group mean was between lower moderate disability and upper moderate disability and the PC group mean was between upper moderate disability and lower good recovery. GOS-E did not differ significantly between the groups at 6 months (t(70) ¼ 1.52, p ¼ 0.13), 36 months (t(49) ¼ 1.22,

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p ¼ 0.23) or 48 months (t(38) ¼ 1.34, p ¼ 0.19). A greater percentage of participants in the PC group were engaged in work or study post-injury than NPC participants. This difference approached significance at 6 months (60.7% PC vs. 38.8% NPC working; 2(77, 1) ¼ 3.45, p ¼ 0.06) and 24 months (85.7% PC vs. 61.0% NPC working; 2(62, 1) ¼ 4.0, p ¼ 0.05), but was not significant at other assessments. Individuals with PC had significantly better self-rated psychosocial outcome on the SPRS (Total Score) compared to the NPC group at 6 months (t(73) ¼ 3.24, p ¼ 0.002), 12 months (t(66.37) ¼ 5.29, p50.001) and 24 months (t(60.68) ¼ 3.89, p ¼ 0.002). This reflected significantly better self-reported outcome on all three domains of Occupational Activities, Living Situation and Interpersonal Relationships. Differences approached significance on the SPRS (Total Score) at 36 months (t(51) ¼ 2.34, p ¼ 0.02) but were not significant at 48 months (t(41) ¼ 0.26, p ¼ 0.79). Coping styles did not differ between the groups at any time point (dealing with the problem: 6 months, p ¼ 0.16; 12 months, p ¼ 0.52; 24 months, p ¼ 0.81; 36 months, p ¼ 0.51; 48 months, p ¼ 0.90; non-productive coping style: 6 months, p ¼ 0.86; 12 months, p ¼ 0.05; 24 months, p ¼ 0.03; 36 months, p ¼ 0.07; 48 months, p ¼ 0.09). There was a tendency for the PC group to use fewer non-productive coping strategies. PC participants were significantly less likely to have a psychiatric disorder at 12 months post-injury (46.8% of NPC vs. 17.2% of PC, 2(76, 1) ¼ 6.85, p ¼ 0.009), with no difference at other assessments (6 months, p ¼ 0.45; 24 months, p ¼ 0.09; 36 months, p ¼ 0.94; 48 months, p ¼ 0.74). This was consistent with results on the HADS, with significantly fewer depression (t(59.62) ¼ 6.62, p50.001) and anxiety (t(62.58) ¼ 4.7, p50.001) symptoms reported by the PC group at 12 months post-injury. PC participants also reported fewer depression symptoms at 24 months post-injury (t(59.65) ¼ 4.70, p50.001). There were no significant group differences on either HADS sub-scales at other assessments. NPC participants were more likely to receive psychological support at 6 months (2(77, 1) ¼ 6.43, p ¼ 0.01) and 36 months post-injury (2(59, 1) ¼ 6.47, p ¼ 0.01).

Discussion This prospective study found similar mean QoLI ratings to another TBI sample [21] and US-based normative data [20], showing Average QoL pre- and post-injury. However, beyond the sample means, it was evident that post-injury, twice as many individuals were in the Very Low range and fewer were in the High range, consistent with previous studies [7,8]. Despite this overall decrease in SWB post-injury, the key finding of this study was that a third of participants had significantly higher post- vs. pre-injury QoLI scores at least once, indicative of improved QoL. Possibly, these individuals may have searched internally to find benefit from their trauma or experienced post-traumatic growth. This is a relatively new interest area in TBI literature (see the special issue on this topic [32]) and warranted further examination. Investigation over repeated assessments showed that improved outlook was stable over the first 4 years postinjury, with the exception of the 36 months assessment.

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This may have been related to increased awareness, lack of expected recovery or stressors regarding litigation. Data on litigation status were not collected. Given the existence of the no-fault accident compensation scheme, legal proceedings would have been unlikely within the first 2 years. However, individuals are routinely evaluated as to their impairment status at 2 years post-injury and may become involved in legal disputes over these ratings. It is possible that a longer time period is required in order to reproduce findings of improved post-traumatic growth and life satisfaction over time, given previous cross-sectional studies have examined up to 12 [33] and 15 years post-injury [34]. The NPC participants had higher pre-injury QoLI scores, suggesting they idealized their pre-injury life and, thus, perceived a greater discrepancy and more disappointment in their current functioning, i.e. the ‘good old days’ bias [35]. They also had greater post-injury disability and impairment and saw their health as one of the most important contributors to their QoL, suggesting that the injury and its associated impairments continued to be a major focus for many years, consistent with previous findings [36]. NPC participants were more likely to have been in a relationship prior to injury and after several years. The quality and consistency of this relationship was not measured, but it may be hypothesized that being in a relationship with the same person as prior to injury highlighted the presence of injury-related changes and thereby increased the injured individual’s sense of disablement. Whilst relationships may endure post-injury, their quality may decline and this may influence QoL ratings. Further investigation of changes in relationships and their impact on QoL is required. In the first 1–2 years post-injury, PC participants demonstrated significantly better psychosocial and functional outcome and fewer psychiatric problems. This could not be explained by differences in demographic factors, injury severity, pre-injury coping styles or pre-injury psychiatric history. The increased importance of relatives in participants with improved QoL highlights the influence of environmental factors, such as social support. The focus on relatives and lower importance of and involvement in romantic relationships in the current study adds weight to the findings of previous studies. Blair et al. [5] and Jacobsson et al. [34]. found increased importance of family and social participation in their samples, respectively. Kalpakjian et al. [10]. found social support and community integration were the strongest predictors of QoL and noted that on interview, participants reported that they strongly depended on their families for social support. Similarly, more TBI individuals report their parents as the significant support in their lives than a spouse [37]. The importance of family has clear clinical implications and highlights the importance of ensuring that relatives are informed and involved in an injured individual’s journey and are supported over the long-term [38]. Moreover, viewing the injury as a family challenge might bring families closer together and help them find meaning in the experience of TBI [39]. This supports a realistic optimism approach within rehabilitation, which allows for both grief, but also hope amongst families [39]. Recent findings suggest that resilient family members use specific approaches to carer management which may serve as a model for families that demonstrate

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DOI: 10.3109/02699052.2014.974671

lower resilience [40]. A more comprehensive and qualitative investigation of family and other social relationships, the interactions and attributions of family members and whether families share the ‘good old days’ attitudes would be helpful in understanding this association with PC in QoL and guiding both family and individual treatment. Other potential contributors include engagement in work or study (as suggested by the trend towards statistical significance, although this may be both a contributing and/or associated factor), general rehabilitation efforts or personality factors, which were not measured in this study. The absence of a significant relationship between PC and concurrent adaptive coping style was surprising given the strong association found previously, albeit different and continuous measures were used [41].

4. 5. 6. 7. 8. 9.

10.

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Limitations A potential study limitation was the reliance on TBI participant’s retrospective ratings of pre-injury QoL, which may have been affected by impaired insight and amnesia. Whilst there is no criterion validity for subjective QoL ratings, the goal of the QoL assessment is, nevertheless, to rely on the insider’s view, rather than to ascertain the objective merit of their ratings [9]. Data were not available for all participants at all time points, mainly due to the ongoing status of data collection. Participants had predominantly moderate and severe injuries and were recruited from an inpatient rehabilitation facility funded through a no-fault compensation system. They, thus, may not be representative of other TBI groups who have not had access to rehabilitation.

Conclusions This study has demonstrated that there is a significant proportion of individuals who experience an adaptive and positive adjustment to their injury and provides some preliminary guidance into potential explanatory factors— such as lack of ‘good old days’ bias and increased value placed on family. Understanding an individual’s QoL may assist clinicians in facilitating post-injury adjustment through problem assessment, treatment planning and tracking progress [20]. Further research is required to better understand these individuals as a basis for translating this growing research interest into therapeutic guidelines to support injured individuals to maximize their post-injury QoL.

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Declaration of interest This research was supported by the Transport Accident Commission. Dr Gould was the 2012–2013 recipient of the Centre of Excellence in Traumatic Brain Injury Research Rehabilitation Fellowship.

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