Theoretical Framework - TBI

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uality of Life After Traumatic Brain Injury: A Review of esearch Approaches and Findings

arcel P. Dijkers, PhD

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BSTRACT. Dijkers MP. Quality of life after traumatic rain injury: a review of research approaches and findings. rch Phys Med Rehabil 2004;85(4 Suppl 2):S21-35.

Objectives: To assess existing knowledge of quality of life QOL) of people with traumatic brain injury (TBI) and to make ecommendations for methodologic and substantive research in his area.

Data Sources: Published research on QOL of persons with BI, identified from databases, ancestry search, and the au-

hor’s files. Study Selection: Empirical, theoretical, and methodologic

rticles relevant to 5 areas: QOL as achievements, QOL as ubjective well-being (SWB), QOL as utility, QOL experi- nced, and QOL measurement instruments applicable to TBI or pecifically developed for people with this impairment.

Data Extraction: Selection of QOL indicators, with focus n TBI versus non-TBI differences. Data Synthesis: Studies of QOL as achievements show that

n almost all areas, people with TBI score lower than they did efore injury and lower than comparisons groups. There are imited gaps in our knowledge in this area. Research into QOL s SWB shows that after TBI, people typically report, for xample, somewhat lower life satisfaction and affect than do omparison groups, and that injury severity is not necessarily a redictor of SWB. There are almost no studies of QOL as tility of life after TBI. Conclusions: Major research recommendations include: ex-

loring the ability of TBI subjects to self-report; determining he salience of domains of life for this group; developing utility nstruments that are sensitive to differences in deficits in cog- ition and other health and life domains; and doing qualitative tudies that explore the experience of QOL.

Key Words: Brain injuries; Outcome assessment (health are); Quality of life; Rehabilitation.

UALITY OF LIFE (QOL) MEANS different things to different people. For some, life could not be better if it

ffered hunting in the morning, fishing in the afternoon. Others ould be happiest shopping at the outlet malls all day. How-

ver, it is not just the content of the good life that is the topic

From the Department of Rehabilitation Medicine, Mount Sinai School of Medicine, ew York, NY. Presented in part at “State of the Science Conference on Community Integration of

ndividuals With Traumatic Brain Injury,” April 24–26, 2002, Washington, DC. Supported in part by the National Institute on Disability and Rehabilitation Re-

earch, Office of Special Education Services, US Department of Education (grant nos. 133G990221, H133A020501, H133B980013). No commercial party having a direct financial interest in the results of the research

upporting this article has or will confer a benefit upon the authors(s) or upon any rganization with which the author(s) is/are associated. Reprint requests to Marcel P. Dijkers PhD, Mount Sinai School of Medicine, Dept

f Rehabilitation Medicine, Box 1240, One Gustave Levy Pl, New York, NY 0029-6574, e-mail: [email protected]. 0003-9993/04/8504-8409$30.00/0 doi:10.1016/j.apmr.2003.08.119

f debate. Scientists disagree among themselves, disputing how he concept of QOL should be defined and how that definition hould be operationalized. Three different conceptions of the OL are found in the literature.1 The concept of QOL (but not the term) originally referred

nly to characteristics of social, political, or geographic enti- ies—for example, the QOL of cities or countries. Economists egan by comparing countries on gross domestic product and ther indicators of the supply of goods; over time, less “mate- ial” goods were considered as indicators of QOL, for example, iteracy level and number of hospital beds per 1000 population. oliticians in the post–World War II Western welfare states aw it as society’s responsibility to provide to its citizens these oods and services constituting or contributing to life’s quality. he term QOL was first used in a political context during residents Eisenhower’s administration.2 Political and other social scientists who were engaged in

social indicators research” on societal QOL indicators at some oint switched from monitoring the supply of societal goods hat are presumed to make people happy to the actual measured appiness and life satisfaction of people. Thus, an entire new eld of study, that of the QOL of individuals, was created. In

his arena, there are 3 entirely different conceptualizations of OL, that figure 1 attempts to link. The starting point is that

veryone has needs and desires that underlie their happiness,3 s well as aspirations and future plans. People emphasize life omains that they consider most important and that they expect o contribute most to maintaining or increasing their life satis- action (fig 1, box D). Reality does not always match these eeds and wishes: their statuses and achievements (eg, what hey have, can do, accomplish; fig 1, box C) sometimes exceed heir expectations, but often fall short: their health status does ot allow participation in satisfying activities, or their income s insufficient, or old friends move away. The gap between hat people want and what they have evokes certain reactions.4

f reality more or less matches dreams and hopes, they likely eel content, satisfied, and happy. If, however, health fails, if he economy sours and jobs disappear, or if a love affair ends, he reaction is likely one of dissatisfaction and discontent. The rst conceptualization of QOL is that of the psychologists and ocial scientists who study life satisfaction and affect: QOL is quivalent to subjective well-being (SWB), the cognitive and motional reactions (fig 1, box E) to the balance of achieve- ents and expectations. SWB includes such phenomena as life

atisfaction, morale, happiness, and (nonpathologic) negative ffect. The term QOL, meaning feelings of “well-being as influ- nced by the good things in life,” is so commonplace that inves- igators can even ask subjects for a direct rating of their QOL.5

Individual expectations (fig 1, box D) are not necessarily diosyncratic; most result directly from human nature, as mod- fied by the culture of the society, social class, and age group o which a person belongs. People learn to enjoy specific foods, o aspire to certain positions, and to expect to have a loving amily and friends.6 Individual physiology, personality, and istory may add only minor variations to the standards and riorities that society teaches (fig 1, box B). In fact, some edical researchers seem to assume that there is so much

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ommunality in people’s expectations and priorities that it is uperfluous to investigate idiosyncratic needs and wishes or ndividual reactions. They reason that once achievements are nown, reactions can be virtually predicted; therefore, a careful nventory of achievements in the major domains of life (fig 1, ox C) is all that is needed to assess QOL. This is the assump- ion underlying most health-related QOL (HRQOL) instru- ents: the status of health in its physical, mental, and social

omains is quantified, and the resulting number (or numbers) epresents QOL. Thus, the second conceptualization of QOL is ne’s share of those characteristics that many people consider ssential to “the good life” (eg, a job, friends, housing, health) nd that can be determined with a large degree of objectivity.

A third use of the term (individual) QOL stems from appli- ations of economic and management decision-making theo- ies. To evaluate the expenses and benefits of one health care rogram or medical intervention relative to another, common etrics for costs and outcomes are needed. Determining costs

s fairly easy, but quantifying outcomes in such a way that they an be compared across many disorders such as psychiatric llness, traumatic brain injury (TBI), and cardiovascular disease s not. The methodology that economists and other social cientists developed uses panels of raters to review vignettes escribing (in word, or video) cases that vary along relevant imensions (eg, mobility, symptoms experienced, mental ealth problems). The panelists rate the desirability of those ives or conditions on a scale in which the extremes are marked

(death) and 1 (perfect health or optimal functioning).7 These references for one health status relative to another (referred to s utilities) concern a single point in time; however, by com- ining them with estimates of how long people will remain in ach status, quality-adjusted life years (QALYs) can be calcu- ated. For example, 2 years in a health status with a utility of .5 equals 1 year in perfect health. Disability-adjusted life ears (DALYs) are a recent development along similar lines.8 hus, the third conceptualization of QOL is the preference for, r utility of, a health status or even a life as a whole (fig 1, box ). Of course, the judgments by the panel members that result

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n these utilities are based on the values and standards of the ociety and the groups to which the judges belong (box B), as odified by their own life experiences. In fact, an ongoing

ebate in QOL research concerns the issue of consensus on tilities.9-12 Many studies have shown that people who have a pecific disability or disorder that results in physical, social, or ental health deficits rate the utility of their health status much

igher than does the general population that rates the same status. owever, in other research, such discrepancies between the

udgments of patients and nonpatients were negligible or nil.13 Figure 1 shows time explicitly because QOL is not a static

henomenon. In fact, change in people’s QOL happens on at east 4 levels:

1. Societal expectations change in the light of new under- standings of the person and his/her relationship to others and to society as a whole—for instance, the shift in emphasis from “man as producer” to “man as consumer” that occurred in Western societies over the 20th century.

2. Individuals’ expectations and priorities change with life- time development and experiences (fig 1, box D). Thus, SWB may change even if actual statuses and achieve- ments (fig 1, box C) are stable.

3. Actual statuses (fig 1, box C) change as a result of aging and events in the outside world (eg, downsizing by an employer, winning the lottery, being in a car accident).

4. Even if “actuality” is constant, and expectations appar- ently do not change, people’s subjective reactions may. Adaptation theory holds that over time humans experi- ence less well-being (fig 1, box E) in the face of constant achievements. Similarly, there is much evidence that the positive effects of good events (eg, winning the lottery) or the negative effects of destructive events (eg, incurring a spinal cord injury) seem to be relatively short-lived: SWB levels rather quickly return to baseline.14

In addition, time is relevant to SWB in another way: “losses” re easier to accept if they are short term. Restricted mobility ecause of a leg broken while skiing is annoying, but most eople can live with it and may (retrospectively) take pride in

Fig 1. Linkages between 3 conceptualizations of QOL. Ab- breviations: DALYs, disability- adjusted life years; Neg, neg- ative; pos, positive; QALYs, quality-adjusted life years. ©2004 by the American Congress of Rehabilitation Medicine. Reprinted with per- mission.1

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ow they managed the problem. Having restricted mobility esulting from an above-knee amputation necessitated by injury r disease is a different matter. At a minimum, adjustment ould be expected to be a much longer process. Thus, one’s erspective—whether problems are seen as growing or dimin- shing, quickly or slowly—may influence how the current tatus is evaluated15,16 and how it affects SWB.

Clearly, these 3 conceptualizations of individual QOL are elated. QOL as utility cannot be calculated without an evalu- tion of QOL as achievements in the light of (societal) stan- ards. QOL as SWB results from a conscious or subconscious omparison between individual standards and the realities of ne’s life. In empirical studies, QOL as achievements is often sed as a statistical predictor or cause of QOL as SWB.17,18 nstruments for quantifying HRQOL are now being related to tilities for the same or very similar health statuses, so that nce someone has completed a self-report HRQOL measure, the tility of his/her health status can be immediately calculated.19-21 ndividual (rather than societal) preference ratings for health tatuses are sometimes used clinically to help patients make ecisions about treatments with differing risks and out- omes.22-25 “Utility” here becomes more or less equivalent to xpected well-being.

TBI is trauma with often lasting and serious effects on ognition; communication; physical health; behavior; person- lity and mood; and, indirectly, on most other aspects of life, hrough a cascade of indirect affects. One would expect that the OL, however conceptualized, of people who incur a TBI is egatively affected. The purpose of this article is to review xisting knowledge of the QOL of persons with TBI and to ssess the methodologies and instruments available for mea- uring their QOL. Suggestions are made for future research nto QOL after TBI.

This review complements several recent appraisals of re- earch on QOL of people with TBI26-29; however, those assess- ents concentrated mostly on psychometric issues, and only

Table 1: QOLS Scores for Person

Domain

Brown and

Importance

TBI Comparison

Group t Test

1. Material comforts 2.50 2.50 NS 2. Health and personal safety 2.83 2.87 NS 3. Relationships with relatives 2.62 2.59 NS 4. Having and rearing children 2.46 2.46 NS 5. Close relationship with SO 2.62 2.73 �.05 6. Having close friends 2.58 2.69 �.01 7. Helping and encouraging others 2.55 2.53 NS 8. Participation in public affairs 1.77 1.77 NS 9. Learning (school and other) 2.63 2.63 NS 10. Understanding oneself 2.80 2.79 NS 11. Interesting work (job, at home) 2.75 2.75 NS 12. Expressing oneself 2.50 2.38 �.05 13. Socializing 2.31 2.22 NS 14. Passive recreation 2.46 2.41 NS 15. Active recreation 2.32 2.40 NS

Total score (mean � SD) 2.51�0.27 2.51�0.26 NS

Total score (mean � SD) No. of cases (minimum) 411 280

bbreviations: NS, not significant; SD, standard deviation; SO, sign

econdarily on the domains of life that have been included in easures of QOL. What is known about the QOL (however

hat term is defined) of persons with TBI has not been sum- arized, nor have other issues related to QOL and its assess- ent received adequate attention. The current article aims to

ectify these shortcomings. The review is oriented by the 3 ain conceptualizations of QOL outlined previously: QOL as

chievements, QOL as utility, and QOL as SWB. (What appear o be 3 clear-cut QOL conceptualizations are, in practice, ometimes vague definitions or concepts seen to underlie a articular research approach. When it comes to measurement, he instruments used sometimes violate the demarcation lines rawn here.)

QOL AS ACHIEVEMENTS What is important to you for QOL? People respond to the

uestion in terms of broad, directly experienced, and “func- ional” material and immaterial goods, such as good health, a harp mind, and financial security. HRQOL studies and social ndicators research have identified those domains of life that ost people consider important to their QOL. Based on thou-

ands of interviews using the critical incident technique, Flana- an30,31 developed a list of 15 domains of life that can be used o inventory achievements and statuses considered important y most people (table 1). This list is used here in describing OL as achievements of people with TBI. There is extensive evidence that severe and moderate TBI,

nd often even mild TBI, affects several statuses that are entral to the concept shared by most people of “the good life.” n exhaustive review of the evidence is impossible and un- ecessary; offered here is information from representative stud- es, with notes on the gaps in our knowledge. The emphasis is n losses as a result of TBI. However, it should not be over- ooked that gains may result from the injury, such as new trengths in oneself, or opportunities to establish new relation- hips. Later, I address the limited literature that concerns gains.

th TBI and a Comparison Group

ergoot85 Dawson et al86

Needs Met Needs Met

TBI Comparison

Group t Test Mild TBI

Moderate TBI

Severe TBI

Comparison Group

2.35 2.40 NS 2.47 2.64 �.001 3.2 3.5 3.8 3.9 2.44 2.51 NS 4.0 4.0 3.6 4.2 1.97 2.34 �.001 1.90 2.36 �.001 3.9 3.8 3.2 4.1 2.18 2.54 �.001 3.6 3.3 3.6 4.0 2.27 2.39 �.01 2.15 2.29 �.05 2.06 2.30 �.001 3.2 3.0 3.2 3.5 2.37 2.55 �.001 1.84 2.20 �.001 3.4 3.8 3.5 3.9 2.14 2.33 �.001 2.07 2.28 �.001 2.45 2.57 �.01 2.11 2.36 �.001 Unweighted

8�0.20 2.40�0.13 �.001 ghted for Importance 1�1.22 6.10�1.09 �.001 11 280 25 8 16 15

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atisfying Work (Occupation) Many studies have found that people with moderate or

evere TBI lose their jobs32,33 and may not regain employment ven with specialized vocational rehabilitation services. Those ho return to work often do so part-time, in a lower-level job,

nd/or in a sheltered employment or similar setting.34 Some tudies, however, have found such negative vocational out- omes only among those with the most severe injuries.35 Not ncommonly, the empty hours created by loss of employment, r termination of school attendance, are filled by expanding ousehold activities. There is no evidence to document that this s only “make-work” or a real shift in taking responsibility for

anaging a household. Employment is a major determinant of QOL because it

ffects many other important factors in QOL, such as standard f living, financial security, and opportunities to meet people. n addition, in Western societies employment is the major arker of responsible adulthood, in addition to marriage. ’Neill et al36 found that employment had an impact on both erceived needs satisfaction and global QOL ratings, even after ontrolling for severity of and time since TBI, gender, educa- ion, marital status, and other predictors.

earning For those who are students at the time of TBI, the result

ommonly is an interrupted education.32 Students may return to chool but often in a less intense program,37 or require special ssistance or curriculum modifications. For those past the age f compulsory education, TBI often results in an end to school- ng. Little is known about differences between people with TBI nd their peers in their attendance at adult education courses, elf-study, and other similar opportunities for learning. It is easonable to assume that such activity would be less frequent or people with TBI, given the cognitive difficulties many of hem continue to have long after their injury.

aterial Comforts The loss of employment, employment in a lesser-paying job,

r failure to be promoted in a current job, likely results in a ignificant decrease in income,38 which is the major determinant f access to material goods. Social security schemes in Western ountries often offer substitutes for salaries and wages32,39 but lways at levels lower than one’s preinjury income. Thus, TBI ften is a factor in a significant decline in material comforts. his is especially true if a family member must quit his/her job

o supervise or care for the person with TBI.

lose Relationship With a Significant Other, Having and earing Children TBI may result in divorce or termination of similar (de facto)

elationships that offer mutual support and intimacy. Although any studies have shown that high percentages of persons with BI become separated or divorced after injury,40,41 no studies ere found that compared the divorce rates with those for arriages of people without TBI, matched for age, age of

artner, and duration of marriage. Similarly, no research has een done to show a lower rate of first marriage or remarriage mong those with TBI than in comparison groups, although imited data suggest that the marriage rate is lower.38 Because t is through marriage or a similar close relationship that most eople have children, high rates of divorce or separations, or ailure to establish ongoing relationships, can also reduce op- ortunities for having and rearing children. In addition, it is ossible that people with TBI and their partners decide not to ave (more) children because of the financial or other burdens

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aused by the injury. No research on these topics was identi- ed.

elationships With Relatives In numerous instances, relatives become the default interac-

ion partners for persons with TBI. Brain injury can result in he loss of work relationships, friendships, romantic partners, nd even spouses; blood relatives, especially parents, often take urvivors into their home or supervise them when they main- ain or regain an independent residence.32,42,43 Relationships ith relatives may become more intense, and they often are

eported to be stressful for the relatives39 and full of conflict. It ay be assumed that persons with TBI have similar judgments

bout the forced nature of their relationship with family,37 but esearch is more limited. Certainly, as a group, people with TBI ppear to have satisfactory relationships with relatives (table ), but these data do not offer a statistical breakdown of those ho lose their emancipated status because of brain injury.

aving Close Friends; Socializing Moderate and severe TBI often results in a falling away of

riendships.32,37,43-45 Forming new friendships is often difficult ecause interaction with others is restricted (no employment or chool attendance) and constraints on mobility further reduces pportunities to meet potential new friends.46 Poor self-control, educed interpersonal skills resulting from the brain damage, nd deficient communicative skills47,48 may add to this prob- em.37,39 Thus, people with TBI tend to have smaller social etworks than their peers,38 and in many instances their only riends are other people with TBI, whom they have met hrough treatment programs or support groups.45

elping and Encouraging Others Because of factors described above (eg, limited or no roles in

ork and school, reduced circles of friends, mobility restric- ions), TBI subjects may have fewer opportunities to assist, uide, or otherwise help other people. Formal volunteer work, specially mentoring other people with TBI,49 may be the ajor approach through which they help others. No studies ere identified to indicate whether people with TBI do more olunteer work than their peers. One article50 found that in a mall sample, “volunteer” is a role not often assumed after njury; volunteering was certainly not reported to compensate or the loss of the worker role.

ctive and Passive Recreation “Leisure disability”51 is a frequent finding in research on the

equelae of TBI. A number of studies reported that people with oderate or severe TBI have a lower level and lower “quality”

f leisure activities after injury32,39,45,52,53 or compared with eference groups.54,55 Tate et al53(p1132) state that in their study ample with severe disability, many engaged in activities that nly could be described as “filling in time,” or had no leisure nterests at all. There is a strong link between lack of friends nd relative social isolation and this leisure disability. For any people, leisure consists of activities engaged in jointly ith others, and any shrinking of the social network thus often

esults in the decline in active recreational life. But it appears hat solitary leisure activities may diminish as well: Hallett et l50 reported that after TBI the loss of the “hobbyist” role is econd in frequency only to the loss of the “worker” role.

articipation in Public Affairs Flanagan included in this category activities related to local

nd national government, including keeping informed through

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he media, voting, communicating with politicians, and “hav- ng and appreciating one’s political, social and religious reedom.”30(p142) No research was identified indicating that ersons with TBI differ from others in their civic activities or hat TBI results in decreased participation in these activities.

nderstanding Oneself Impaired self-awareness is a problem that confronts rehabil-

tation providers and family members in their interaction with any people with moderate and severe TBI because many of

hese patients evince limited awareness of cognitive, emo- ional, and behavioral deficits.34,56 From the patients’ perspec- ive, unawareness may have a protective effect, allowing them o disregard painful changes in their lives. Godfrey et al57 eported greater emotional distress in patients with more accu- ate self-awareness. Beyond self-awareness deficits, the self- nderstanding of persons with TBI has been little studied. ome research examines attitudes toward acceptance of dis- bility.58 Research that has addressed understanding of self at a eeper level has been exclusively qualitative in nature (see elow) and has not involved comparison groups. Consequently, here is little information on how self-understanding by people ith TBI is quantitatively or qualitatively different from that of thers; there is only limited understanding of the changes from re- to postinjury.59,60

xpressing Oneself Expressing oneself, as used by Flanagan,30 involves creative

xpression in arts and crafts, in practical activities, and in eisure—not the traditional verbal and nonverbal expression ith which rehabilitation professionals are familiar. Flanagan id not specify expression through vocational activities but did ot exclude it, either. Given the findings on impoverished eisure, unemployment, or employment in jobs offering less pportunity to use one’s imagination, one can assume that eople with TBI have less occasion to express themselves. owever, information in this area is scarce; a study of the

atisfaction and expression people with TBI find in their work, ree time, and other activities could not be found.

ealth and Personal Safety Even mild brain injury may bring about several health con-

erns and complaints, many of which do not diminish with ime.61-65 Moderate or severe TBI commonly results in physical nd mental health problems that can be assessed objectively. unctional status (eg, ability to perform self-care, problem-

Table 2: SF-36 Scores for Persons With T

Colantonio et al69

SF-36 Scales Mild TBI

Moderate/ Severe TBI Normati

Physical functioning 85�22 75�35 92�18 Social functioning 73�27 73�27 84�21 Role functioning–physical 79�37 75�37 89�27 Bodily pain 77�19 81�18 81�21 Mental health 47�16 47�17 75�18 Role functioning–emotional 82�33 76�38 83�31 Vitality 54�10 53�14 63�20 General health 64�27 68�23 76�18 Mental health composite Physical heath composite No. of cases 24 27 —

OTE. Values are mean � SD.

olve, communicate) may be affected immediately after injury, lthough physical abilities return to normal or close to normal n most cases. Numerous studies have indicated that TBI sur- ivors report many more symptoms and health problems, spon- aneously or based on standard checklists, than matched com- arison groups.34,49,66-70 HRQOL measures typically combine into 1 total score or a

umber of subscores (a profile) information on physical, men- al, and social health, and sometimes symptoms. As such, these easures tend to overlap with, or to a degree incorporate,

ocializing, occupational role performance, recreation, and fur- her indicators of functioning in other Flanagan domains. Sev- ral studies have collected information on self-reported RQOL for people with TBI, and compared it with reports by on-TBI groups, directly or based on norms. Because the edical Outcomes Study 36-Item Short-Form Health Survey

SF-36) is the most commonly used HRQOL measure, some elevant studies are presented here (table 2); similar informa- ion could be cited for such measures as the Sickness Impact rofile-567,71-74 (SIP-5), Nottingham Health Profile,75 General ealth Questionnaire,38,76 and other HRQOL or health status easures. All studies that used the SF-36 have shown lower ean scores on all of its 8 scales, and on its 2 summary scales

mental health component, physical health component), for hose with TBI compared with comparison group members or ormative groups, indicating poorer health. Surprisingly, the ild TBI groups had lower means than the moderate to severe

roups in 2 studies.66,69 In the study by Findler et al,66 this ifference persisted (except for the physical functioning scale) fter controlling for age, income, and gender. It largely disap- eared after depressed mood was used as an additional control actor.

Fatigue is not part of the SF-36 and similar HRQOL instru- ents, but it is possibly measured indirectly through relevant

ymptoms and complaints. Van der Naalt et al77 found that omplaints of fatigue after TBI were common with 45% of ubjects reporting it 1 year after mild to moderate TBI. aChapelle and Finlayson78 reported that subjects with TBI ad high scores on both objective and subjective measures of atigue and that more than half rated fatigue as their worst ymptom. Fatigue may be related to, or even caused by, other roblems common in the TBI population, including sleep dis- urbances and daytime somnolence,79 pain, and depression.80,81

Several domains of life not on Flanagan’s inventory could be isted in which TBI survivors, on average, are less “successful” han their peers. Flanagan may have omitted them because they

d Comparison Groups, Various Studies

Paniak et al138 Findler et al66

TBI Comparison

Group Mild TBI

Moderate/ Severe TBI

Comparison Group

63�27 95�9 68�24 72�29 97�9 49�27 86�19 59�33 71�29 94�13 20�32 88�25 43�43 59�40 94�21 41�23 83�20 54�27 67�29 84�17 62�22 76�16 59�22 68�20 77�15 51�43 80�31 55�43 74�37 94�19 31�19 62�18 41�23 58�24 68�17 73�18 76�19 59�27 68�24 82�17 41�12 49�9 38�10 54�6

120 120 98 228 271

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S26 QUALITY OF LIFE AFTER TRAUMATIC BRAIN INJURY, Dijkers

nclude the basics that people do not question unless satisfac- ion of needs is significantly reduced—for example, breathable ir or being treated as an adult.82 For instance, independent iving is impossibile for many people with severe TBI because f medical, financial, or behavioral problems.45 Some live in ursing homes or other long-term care facilities; others move ack in with parents or never move out. Use of private and ublic transportation and the freedom to interact with people nd pursue one’s interests similarly are often restricted because f loss of driving privileges, problems with orientation, and so orth. Cognitive functioning (to the degree that it is not cap- ured under “health” or “understanding oneself”) is another omain missing from most generic HRQOL measures83 and rom much of the research on HRQOL after TBI.27 Commu- ication problems are characteristic of many persons with TBI. lthough these problems may be rather subtle and limited to

discourse,”47,84 adequate communication is central to many of he domains on Flanagan’s list. It might be isolated as a QOL imension by itself if his methodology was replicated with a BI sample.

QOL AS SWB In the formulation used here, SWB is the end result of

eighing what one has and is (defined as broadly as possible) gainst one’s standards and expectations. These standards may e absolute, comparative with oneself (eg, “prior to my in- ury”), or relative to others. There is no claim that making these omparisons is a conscious process; in fact, only life satisfac- ion is considered to be the result of such a formal accounting, nd many people may never evaluate their QOL unless asked o do so by a researcher. Mood states (in which positive and egative affects must be considered independent dimensions ather than one another’s complement), as well as morale and elf-esteem, are the products of a much less (self-)conscious rocess. Life satisfaction has been assessed in people with TBI using

ifferent instruments, including the Flanagan Quality of Life cale30 (QOLS). This instrument uses separate ratings of the

mportance of domains and of one’s satisfaction of needs with espect to each domain. A total life satisfaction score is calcu- ated as the mean of weighted domain need satisfaction scores.

Table 3: SWLS Scores for Persons With T

Author

Studies cited in Pavot and Diener139 College student Lowest (N�35 Highest (N�2

Disabled studen Disabled studen Older adults (N� Health care wor Printing trade w Male prisoners

Brzuzy and Speziale39 51 persons with Corrigan et al67 95 persons with Corrigan et al124 Persons with m

At 1y postons At 2y postons

Bryant et al140 Persons with se With PTSD (N Without PTSD

OTE. Values are mean � SD. bbreviations: avg, average; est, estimated; PTSD, posttraumatic st

rch Phys Med Rehabil Vol 85, Suppl 2, April 2004

he data in table 1 are from a study by Brown and Vander- oot.85 Surprisingly, the differences in importance ratings be- ween subjects with TBI and the comparison group are rela- ively minor; despite large sample sizes, statistically significant ifferences were found only for the importance attached to the omains of “close relationship with significant other,” “having lose friends” (which subjects with TBI considered less impor- ant), and “expressing oneself” (which was more important). ontrolling for gender, age, marital relationship, and ethnic nd racial group made no difference in these findings. TBI urvivors did, however, believe that their needs were less well atisfied in all but 2 domains. Their total needs satisfaction core was lower, whether it was based on weighted or un- eighted domain scores. Comparable results for needs satis-

action on the QOLS were reported by Dawson et al.86 Research using global, rather than domain-specific, satisfac-

ion ratings has resulted in similar findings: compared with heir peers, TBI survivors tend to report lower life satisfac- ion.73,74,85-87 The Satisfaction With Life Scale (SWLS) is in- reasingly used in TBI research, and table 3 summarizes find- ngs from 5 studies. None used comparison groups, so reported cores for other population groups are provided as a basis for omparison. It is clear that the typical subject with TBI reports lower level of overall life satisfaction than do comparison

roups, except for male prisoners. However, there was sizable ariability in all samples, and many subjects with TBI had life atisfaction similar to or even higher than the average non-TBI erson. Negative affect shows parallel results in most studies: people

ith TBI report more depressed mood, anxiety, and other ndesirable mood states than do comparison groups. The SF-36 ata for the mental health scale shown in table 2 are a good ndication of the impact of TBI and its sequelae on affect. This cale includes questions on nervousness, peacefulness, happi- ess, and feeling down in the dumps and blue. The vitality cale also has mood elements (feeling worn out or full of pep), nd the role functioning–emotional scale quantifies the behav- oral consequences of mood as it translates into limitations of unctioning. Similar results can be shown for measures of pecific emotions and feelings such as anxiety,73,74,76,88 depres- ion,66,88-91 and self-esteem.92,93

nd Comparison Groups, Various Studies

Subjects SWLS Scores

amples) 23.0�6.4 25.2�5.8

mple 1 (N�32) 20.8�8.4 mple 2 (N�29) 24.3�7.4

24.2�6.1 (N�255) 23.6�6.1 s (N�304) 24.2�6.0

12.3�7.0 erate to severe TBI (avg 10y postonset) 17.9�8.3 erate to severe TBI (avg 2.5y postonset) 18.9�8 (est) te to severe TBI �170) 20.3�8.1 �160) 20.8�8.4 TBI

12.9�5.5 70) 19.1�8.9

disorder.

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S27QUALITY OF LIFE AFTER TRAUMATIC BRAIN INJURY, Dijkers

QOL AS UTILITY An extensive literature discusses methods of deriving utili-

ies and other methodologic issues in health status preference tudies and the application of those methods.7,94-97 However, nly 1 study was found that used a utility QOL measure with sample with TBI. Taylor et al98 evaluated the benefit of very

arly decompressive craniectomy in children with severe brain njury, and used the Mark 1 Health Status Utility to assess utcomes at about 6 months postinjury. Of the 13 children who eceived the operation, 7 had a favorable outcome (defined as Mark 1 score range between .70 and 1.00); the other 6 had an nfavorable outcome (a score between .69 to �.21; this mea- ure allows states to be rated as “worse than death”). Of the 14 hildren who received medical management, 13 had unfavor- ble outcomes, including 9 who died. Unfortunately, only road outcome categories were reported; no median or mean ark 1 scores or individual scores were provided. Published values for the dimensions of the Quality of Well-

eing (QWB) Scale,96 another utility measure, makes possible he calculation of the utility of the health status of persons with BI. These weights (table 4) are based on evaluations (by a

Table 4: QWB Scale Weights for Selected Categories in 4 Dimensions

Description Weight

Mobility categories No limitations �.000 Did not drive a car, or did not use public

transportation, or needed help to use public transportation �.062

In hospital �.090 Physical activity categories

No limitations �.000 Independent in wheelchair; or trouble with

lifting, stooping, bending, or stair climbing, or limitation in walking �.060

Dependent on others for wheelchair mobility, or in bed or chair for most of the day �.077

Social activity categories No limitations �.000 Limited in major (primary) role; or limited in

other role activity (eg, recreation) �.061 Performed no major role activity and needed

help in performance of 1 or more self-care activities �.106

Symptoms and problems categories (only the most severe one is scored)

Loss of consciousness such as seizures �.407 Trouble learning, remembering, or thinking

clearly �.340 General tiredness, weakness, or weight loss �.259 Spells of feeling upset, being depressed, or

crying �.257 Headache, or dizziness, or ringing in ears, or

spells of feeling hot, nervous, or shaky �.244 Eyeglasses or contact lenses �.101 Trouble sleeping �.257 Problem with sexual interest or performance �.257 Excessive worry or anxiety �.257

imitations are counted only if they are because of health reasons not age, preference, etc). Weights indicate the value to be sub- racted from 1.000 (optimal well-being) to calculate utilities. Modi- ed from Patterson et al.99 Reprinted with permission.

andom population sample) of more than 400 case vignettes.99 n table 5, the information has been applied to 3 hypothetical but not atypical) cases differing in TBI severity. As a refer- nce point, the average utility for a probability sample of the an Diego population is provided. The health of the average itizen does not receive a preference score of 1.000 (optimum ealth), because points are lost for common health problems uch as poor eyesight necessitating glasses (�.101) or being epressed (�.257). However, the 3 hypothetical TBI cases core lower than the population average.

Similarly, published values for the 8 dimensions (vision, earing, ambulation, dexterity, cognition, speech, emotion, ain) of the Health Utilities Index Mark 3 (HUI3), a later ersion of the measure used by Taylor,98 allows for similar alculations.97 Applying these values to the impairments that ight be reported by hypothetical persons with mild, moderate,

r severe TBI (or their proxies) results in HRQOL estimates of 632, .329, and .125, respectively. This compares with an verage of .925 for the population at large. The average utility or individual attributes for the reference sample indicates that ost persons reported no impairment on the 8 HRQOL dimen-

ions of the HUI3. Averages on the QWB or the HUI3 for TBI survivors can be

alculated overall and in various subgroups once information is vailable to categorize them along the 4 or 8 dimensions nvolved. It is reasonable to expect that such data would show hat the health status of the average person with TBI is valued s less than that of the average person without TBI. The atio-scale measurement afforded by the utility measures per- its a precise quantitation of how much less.

Table 5: QWB Scale Utilities of Hypothetical Persons With TBI

Description Utility

Average person in population .80 Mild TBI .599

Mobility: no limitations (�.000) Physical activity: no limitations (�.000) Social activity: limited in primary role: work

(�.061) Symptoms and problems: general tiredness;

trouble learning and remembering; trouble sleeping (�.340)

Moderate TBI .470 Mobility: did not drive car (�.062) Physical activity: no limitations (�.000) Social activity: limited in primary role: work

(�.061) Symptoms and problems: seizures, trouble

learning and remembering, dizziness (�.407)

Severe TBI .432 Mobility: did not drive car (�.062) Physical activity: trouble lifting and bending

(�.060) Social activity: limited in primary role: work

and needs help in self-care (�.106) Symptoms and problems: trouble learning,

remembering, and thinking; tiredness; depressed; headaches; problems with sexual performance; anxious (�.340)

odified from Patterson et al.99 Reprinted with permission.

Arch Phys Med Rehabil Vol 85, Suppl 2, April 2004

T p m r a s c t o a s a d a i e

n f i b o f d a T c s D r i p m t d a t w t

m a a b t a t p r r

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S28 QUALITY OF LIFE AFTER TRAUMATIC BRAIN INJURY, Dijkers

QOL EXPERIENCED

The literature on HRQOL, QOL, and other outcomes after BI addresses losses, burdens, and deficits exclusively, tem- ered by success stories of treatment, training, and develop- ent of compensatory skills that enable those with TBI to

egain, at least partially, what was lost because of the injury nd its cascade of effects. The data on SWB suggest that most ubjects with TBI perceive the injury and its direct and indirect onsequences negatively, even after treatment and rehabilita- ion. In terms of QOL as achievements, the losses or missed pportunities result in HRQOL levels lower than those of the verage person without TBI. The hypothetical data on utility cores for subjects with TBI (table 5) suggest that society grees with them and that life with TBI (or at least with the eficits typical of TBI) is seen as less desirable than life with typical or normal health status. The only literature that has

ndicated some positive effects of TBI, some gains from this vent, has been that reporting on qualitative research.

Although this literature does have a strong emphasis on egatives, its focus is not so much on the quantification of unctional limitations or neuropsychologic deficits, as much as t is on the meaning of TBI and its physical, cognitive, and ehavioral consequences. The primary theme of the narratives f persons with TBI reflected in this literature is loss of a uture,37 of chances to participate in the typical things teenagers o,37,92 of control over one’s emotions and behaviors,37 and of utonomy and privileges.37 However, the most salient result of BI seems to be, for the moderately or severely injured, a hange in the sense of self37 or even a loss of self.100-104 The tudies vary in their emphasis on different aspects of this. uggan101 suggests that there is a profound sense of disorder

esulting from the many losses experienced and the “biograph- cal disruption” caused by the TBI. “Emptiness” and lack of ersonal fulfillment contribute to the “feeling of being lost” in any of her subjects, she notes.101 Nochi,103 however, suggests

hat the loss of self is not a direct consequence of the brain amage, but the result of, or is experienced only in, the inter- ctions with others. His subjects reported a loss of self because hey felt they were not understood by others, both when they ere equated with a “damaged brain” and when they managed

o pass for “normal.” It may be that these are only apparent contradictions; the rich aterial collected by qualitative researchers permits selection

nd analysis of many aspects of life. The types of questions that re asked and the answers given in samples of differing social ackgrounds, ages, and injury severities are the likely causes of he discrepancies. Qualitative research into TBI is fairly new, nd one can expect that in the future investigators will compare heir data collection and analytical methods and will be better ositioned to determine what experiences, meanings, and nar- ative elements are universal, or nearly so, and which are estricted to more limited subgroups.

Nochi has observed that “people with TBI may gradually hift the focus of their self-narratives from ‘In spite of TBI’ to Because of TBI.’”102 Most qualitative research studies report ome elements of positive results of the injury, although it is ften limited to “a feeling of being glad to be alive”—92,101 ardly a ringing endorsement of beneficial impacts. Other ositive outcomes noted by some of Duggan’s101 subjects was: eing more appreciative of the little things in life and having a reater understanding of other people’s frailties. Growth (in a oral sense) and insight into self and others was also men-

ioned by Nochi’s102 subjects, some of whom also revealed that BI put a stop to a self-destructive course of substance abuse.

rch Phys Med Rehabil Vol 85, Suppl 2, April 2004

RESEARCH NEEDS

The National Institutes of Health (NIH) consensus confer- nce on rehabilitation of persons with TBI105 made 2 broad ecommendations concerning QOL: (1) QOL predictors for ersons with TBI, their families, and significant others should e studied, and (2) generic HRQOL assessment instruments ust be validated for use with persons with TBI and TBI-

pecific instruments must be developed and validated. Substantive issues (recommendation 1) cannot be studied

ithout development of better QOL measures (recommenda- ion 2), but development of these tools must be guided by nowledge of TBI and its sequelae, and understanding of how urvivors, their families, and friends understand the injury, and ecreate their lives, or create a new life, after TBI. The need for esearch tools is broader than just developing TBI HRQOL nstruments or validating generic ones.

The second recommendation was also made in several re- iews of the literature on QOL measurement as it relates to BI. Riemsma et al26 evaluated the degree to which general ealth status measures (ie, HRQOL measures) have been eval- ated for use with people with cognitive impairments, includ- ng TBI. They reported that of 34 measures used in samples ith cognitive impairments, only 6 have been extensively alidated in these groups. A second finding was that samples of ognitively impaired subjects generally showed poorer validity esults than samples with nonimpaired subjects. Riemsma con- luded that “there are no validated instruments available for use n cognitively impaired respondents,26(p iv) and that instruments eveloped for the general population should be used cautiously n studies of persons with cognitive “impairment.” Almost all f the studies that provided useful information on psychomet- ics relevant to persons with TBI (for 5 measures: SIP, Brain njury Community Rehabilitation Outcome–39106 [BICRO-39], AS-QOL,73 Vitanen Life Satisfaction Interview,45 Patient ompetency Rating Scale107) were criticized for including

ewer than 50% of persons with cognitive impairment in their amples.

Berger et al27 focused on the areas of life included in studies f the QOL of people with TBI. They noted that 4 functioning omains were frequently used: physical (including pain), psy- hologic (eg, affective disorders, personality changes), social especially vocational status and relationships with family and riends), and cognitive. Only a minority of studies considered ll 4 domains, however. Berger noted that studies lacked def- nitions of the concept of QOL (a complaint not unique to the BI literature), frequently failed to address the multidimen- ionality of the construct, and often relied on reports by pro- essionals or other proxies rather than on patient self-report.

The latter complaint was shared by the TBI Consensus roup that considered available generic and TBI-specific mea-

ures of QOL relevant to 3 phases: acute care, rehabilitation are (approximately up to the first anniversary of injury), and he long term.28 The TBI Consensus Group noted that available easures applicable to the latter phases have several shortcom-

ngs, including lack of ratings by subjects of the importance omains and issues have for them, absence of qualitative data, ack of information on preinjury life, focus on negative aspects f QOL, lack of norms, and omission of 2 important dimen- ions of QOL after TBI—cognition and the “existential do- ain.” The CHI Consensus Group noted that self-report was

ven rarer in the child and adolescent population, even though his group, too, defined the perspective of the person as the uintessential characteristic of QOL.29 They found 6 existing eneric child QOL measures that satisfied a minimum number

o u

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c f w “ v s s e D q v r i m t h o r b t b t Q

t h u a i t s ( r s a

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S29QUALITY OF LIFE AFTER TRAUMATIC BRAIN INJURY, Dijkers

f the criteria they had set forth, but noted that none had been sed with children with TBI. There are several other issues about which our knowledge of

he QOL of persons with TBI is insufficient. The following are uggested high priority areas for research.

ssues Cross-Cutting QOL Conceptualizations: Ability to elf-Report Most QOL research depends on self-report by subjects, and

esearch on QOL after TBI is no exception. QOL-as-achieve- ents information commonly relies on statements by the per-

on involved, although proxy reporting has been used. These ame reports are the basis for determining QOL as utility. And or assessment of SWB, self-report is indispensable, although a ew studies have relied on proxy reports to measure well- eing.108 The QOL literature indicates that a sizable percentage f the general population cannot complete more complex QOL nstruments, especially those that attempt to establish the sa- ience various life domains have for an individual.1 However, hether people with TBI can be reliable self-reporters has not et been resolved. Some investigators have concluded that eople with moderate or severe TBI lack the insight, memory, r communication skills to provide useful and complete an- wers to researchers’ questions. Others claim that without input rom the insider, descriptions lack crucial information; conse- uently, unless there is solid evidence that a person cannot ontribute to an understanding of his/her situation, proxy re- orts should not be used. Most researchers have taken a more ragmatic stance and have used survivors’ answers to their uestions because they are easily available. There is lack of solid information concerning at what point

ognitive and communicative deficits prohibit a TBI survivor rom reporting what type of information. Self-report by people ithout apparent cognitive deficits has been studied in the

cognitive laboratory,” with a focus on how people reply to arious types of survey questions. Studies have shown that urvey respondents use several cognitive processes when an- wering a question; the basic ones are comprehension and ncoding, retrieval and recall, evaluation, and response.109-111 etails of these processes differ by type of interview and uestion (self-administered vs other-administered, open-ended s closed), the nature of the relation between respondent and esearcher/interviewer, and question content type (eg, sensitiv- ty of the information, beliefs, knowledge, behaviors, judg- ents). It would be useful to investigate what specific cogni-

ive skills are needed to perform adequately in these 4 areas and ow the skill level of people who are likely to have cognitive r communicative problems can be assessed as part of survey esearch without administering a complete neuropsychologic attery. Simply administering the Mini-Mental State Examina- ion (MMSE) or a similar screening instrument is not sufficient ecause some studies have found that people who fail the raditional MMSE cutoff point (24) may still report reliable OL information.112 Unawareness of deficits is an example of cognitive problems

hat may interfere with reporting. Researchers disagree as to ow common the problem is and what deficits are primarily nderreported. It seems clear that, as in many other disorders ffecting cognition,112 awareness of emotional problems is nvolved more so than discernment of physical or even cogni- ive difficulties, or of one’s own feelings.34,56 This finding uggests that, in describing QOL as achievements, impairments fig 1, box C) may be underreported, especially those involving emembering, problem solving, and communicating. As a con- equence, QOL utilities based on the self-report (box A) would lso be affected, resulting in a higher preference value than

ould have been calculated if the report of status on the elevant dimensions was made by a proxy. However, unaware- ess might be irrelevant to reports of happiness and life satis- action (box E): what is not noted does not affect well-being.

Formal evaluation of the ability of people with mild, mod- rate, or severe TBI to reliably report on their life and life ircumstances has barely begun. A pilot study113 indicated that here may be differences between those classified as having a evere TBI and those with mild or moderate injury, in their onsistency in reporting SWB, statuses, and achievements test-retest reliability, internal consistency). However, it was ot clear whether this difference was only qualitative or if the ormer group should be barred from serving as self-report- rs.113 If people with more severe TBI are shown to be unable o reliably answer the standard questions used in QOL re- earch, that does not necessarily mean that they should be isqualified as self-reporters altogether. It may be that they can eport on their own priorities, feelings, and judgments if re- earchers adapt their instruments. Researchers dealing with ther populations have shown that when they simplify the uestions, limit the number of answer categories to 2 or 3, and ake similar steps, people with mental retardation114 or Alzhei- er’s disease112 can reliably complete interviews about their OL.

ssues Cross-Cutting QOL Conceptualizations: Salience f Domains of Life Distinguishing domains of life such as the social and eco-

omic, is common in lay and scientific discourse. In QOL esearch, it is important to differentiate domains to the degree hat QOL total scores are calculated by summing over domains; his is a common approach in utility, HRQOL, and SWB easures. Some measures in the latter category use rating of

he relative importance of domains in scoring.1 However, re- orts are limited as to which domains people distinguish spon- aneously, and how they are weighted relative to one another in ssessing one’s overall QOL. Flanagan30,31 did the most sys- ematic research, interviewing nearly 3000 subjects and using he critical incident technique to elicit situations and happen- ngs that had affected QOL positively or negatively. Based on he responses, he distinguished 15 domains of life. Later re- earchers have generally used a smaller number of domains typically, 3 to 5), without approximating Flanagan’s extensive esearch; most seem to have made the decision based on their xpert knowledge, or for convenience’s sake (keeping the umber of questions to be answered down to a reasonable umber), or in imitation of others. Approaches other than that of Flanagan are certainly possi-

le. For instance, O’Boyle et al115-118 used direct nomination of omains that subjects consider important for their QOL. For implicity, they capped the number at 5, and some people had ifficulty nominating even that number. There was no explo- ation of the definition or boundaries of the domains nomi- ated, nor of possible overlap. Qualitative research is needed to xplore if and how people spontaneously segment their life in omains, how they define them, and how the various domains re related. It is possible that there is a significant overlap from person to the next in this subdividing of the whole of life,

hus justifying the use of fixed lists of domains with standard efinitions by researchers. It is also possible, however, that normous variety exists (as suggested by O’Boyle)115 and that ersonal construct psychology methods are needed to deter- ine for each person how life as a whole is compartmentalized

n segments that play different roles in the experience of QOL. Even if it is assumed that 4 or 7 or 15 specified (standard)

omains of life are sufficient to capture all information relevant

Arch Phys Med Rehabil Vol 85, Suppl 2, April 2004

t r M B m p e H a t i r a

s r d t a r f s d a T t r o T a s w a t q i a i n o a v o

o s f [ g o i Q o i s p a s t d a r

m t t f w “ c p i

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S30 QUALITY OF LIFE AFTER TRAUMATIC BRAIN INJURY, Dijkers

o QOL, it should not be presumed that their importance elative to one another is constant across individuals or groups.26

uch interindividual variation has been reported.85,119,120 ut there are also intergroup differences and secular trends that ake assigning standard weights for domains a hazardous

rocedure. For instance, Flanagan reported systematic differ- nces in the 1970s between people in their 30s, 50s, and 70s. is respondents assigned much greater importance to “civic

ctivities” (participation in activities relating to local and na- ional government and public affairs) than have samples stud- ed in the 1990s.121 Thus, even in research focusing on group, ather than individual differences, individualized measures that llow for weighting of domain importance may be needed.1

OL as Achievements: Substantive Issues As indicated earlier, there is a lack of information on the

tatus of persons with TBI in many areas: for example, mar- iage and divorce rates and participation in public life. To the egree that these are considered important domains of “objec- ive” QOL, research to fill the gaps would be useful. In the reas in which there is substantial knowledge, a systematic eview followed by meta-analysis, if indicated, might be use- ul. Various authors have noted that TBI research typically uses mall samples; consequently, estimates of, for example, school ropout rates or community integration levels vary consider- bly. The study-to-study variability in design and in subject BI severity and other characteristics (eg, age, gender) at the

ime of injury adds to this problem. A systematic review of esearch that takes these factors into account can resolve some f these issues. Alternatively, larger databases (eg, that of the raumatic Brain Injury Model Systems)122,123 can be used to nswer some of the questions. The same reviews or original tudies can provide information relevant to predictors of QOL, hich is the first recommendation of the NIH panel. In fact, no

rea of QOL after TBI has been researched more extensively han that of the predictors of QOL as achievements, generally uantified as impairment (deficits), activity limitations (disabil- ties), and participation restrictions (handicaps). The lack of greement on instruments for measuring predictors (eg, sever- ty, preinjury achievements) and QOL outcomes (eg, commu- ity integration, need for supervision) has hindered integration f this body of knowledge. Inconsistencies in the timing of ssessments is another issue that prohibits a systematic over- iew of what is and is not known about the cascade of sequelae f TBI.27,29

OL as Achievements: Measurement Issues There is quite an array of measures of outcome after TBI, all

f which quantify at least some aspect of QOL as an objective tatus. Most were developed before health researchers began ocusing on QOL issues (eg, the Glasgow Outcome Scale GOS], Glasgow Outcome Scale–Expanded, Community Inte- ration Questionnaire, Disability Rating Scale [DRS]), or with- ut specific attention to QOL concerns (the SIP, Aachen Qual- ty of Life Questionnaire, BICRO, European Brain Injury uestionnaire). HRQOL measures tend to focus on the status f health broadly defined, with emphasis on everyday function- ng. QOL researchers distinguish between generic QOL mea- ures and disease-specific ones. The former are sensitive to hysical, mental, and social health problems that are typically ffected by a broad range of diseases and injuries. Disease- pecific measures are instruments designed to be sensitive to hose deficits and problems that are unique to specific disor- ers. There has been extensive discussion of the advantages nd disadvantages of these 2 types of measures in various esearch situations. Berger et al27 claim that generic QOL

rch Phys Med Rehabil Vol 85, Suppl 2, April 2004

easures are not appropriate for research into TBI and its reatment because the measures do not cover some domains hat typically are significantly affected—especially cognitive unctioning. A similar criticism is leveled by Bullinger et al.28 ho also specified that existing instruments do not cover the

existential domain.” Including that domain would expand the overage of HRQOL measures into the area typically encom- assed by SWB measures. Pain is another area that is dealt with nsufficiently by several existing instruments.

Riemsma et al26 questioned the validity and applicability to BI of most generic QOL measures, because of the self-report roblems described previously, and the inadequate coverage of alient domains. In their review of relevant studies of the sychometric qualities of these instruments in populations with ognitive-communicative problems, they concluded that most tudies were of poor methodologic quality and thus provided imited evidence of the validity of the data they generated by sing these instruments. Consequently, the measures should be sed with care. Validation of generic HRQOL instruments for se in TBI has begun. For instance, Findler et al66 designed heir study to assess to what degree the SF-36 provides reliable nd valid data when used with this population. Similar studies nderway with other instruments, and the pessimism of iemsma26 may soon be outdated. Given that several well-validated measures of “outcomes”

fter TBI (eg, the GOS, DRS) provide the information typically ncluded in HRQOL measures, or that one would assume ould be included in a TBI-specific measure, the need to evelop disease-specific TBI QOL measures is debatable. It ay be more efficient to explore whether it is possible to

evelop modules that quantify status in areas typically omitted n generic QOL measures—for example, cognitive functioning. n addition, if validation studies suggest that existing generic easures are not reliable when used with the TBI population or

ignificant subgroups, researchers might focus on modifica- ions in wording, presentation, and other aspects that may esolve the problems.

OL as SWB: Measurement Issues For many purposes, “global” measures of life satisfaction

dequately assess the evaluative aspect of QOL as SWB. owever, in some studies, the interest is in life satisfaction or eed satisfaction in specific domains, and in these circum- tances instruments such as the QOLS30,31 or Ferrans and owers’s Quality of Life Index119,120 (QLI) might be insuffi- ient, because they inadequately cover domains such as cog- ition and communication. It appears that an instrument similar o the QLI that is specific to the life situation of persons with BI is warranted.

OL as SWB: Substantive Issues Several studies have attempted to explain variations in SWB

etween persons with TBI, using as predictor variables demo- raphic, injury severity, and other characteristics. These efforts ave been marginally profitable.17,67,124 Only when other SWB lements are included among the predictors of, for example, ife satisfaction, are such efforts more successful.124,125 This oints to 2 issues. First, SWB elements are strongly related to one another.126

appy people tend to have high life satisfaction; people with igh self-esteem seldom suffer extensive negative affect. The orrelations are not strong enough to disregard distinctions etween SWB components, but it is evident that 1 SWB omponent is a better predictor of another than is an objective haracteristic describing the person, such as employment, in- ome, or physical health. Brown et al85 proved this by system-

a A e 1 w i h H u h

p a t p b S d t l t s t t l r t L s e h a s a a a F c

i t s s o v t s t c p p h w d o i s o c w

s t p a t

i i T s T p t a t a r n ‘ t a r b R i s

q w Q n h a w t i a c m p f k 2 r e e s t

s m u T b u u t t a e i o s p w n m T

S31QUALITY OF LIFE AFTER TRAUMATIC BRAIN INJURY, Dijkers

tically comparing models predicting global QOL judgments. s in previous research, the percentage of variance that was

xplained when using purely objective factors was low (13%– 5%); it nearly doubled when cognitive complaints (a some- hat subjective issue) were added to the model, or objective

ndicators of satisfaction of common human needs (eg, income, ours spent in hobbies and reading) were used as predictors. owever, when subjective indicators of needs satisfaction were sed, the percentage of variance explained increased to 45% or igher.18 Second, without taking into account differences between

eople in what they want out of life, explaining SWB based on chievements alone is likely to be unsuccessful. Minor cogni- ive and communicative impairments from TBI may be less roblematic for a factory worker than for a schoolteacher ecause of the differing requirements of their occupations. ome people attach lower importance to financial security than o others. After TBI, certain people manage to redefine who hey are and bring expectations and standards for their life in ine with the new reality, while others cling to the hope that hey can again be the person they were preinjury. QOL re- earchers in all arenas have just begun to address the expecta- ions and desires people have that affect SWB, and changes in hese aspirations and dreams that do or do not occur because of ife’s vicissitudes. In particular, there are no instruments that eliably measure “realistic” expectations that people have for heir lives.1 A start was made with the development of the iving Life After TBI Scale,127 which asks how frequently a ubjects engages in certain activities (eg, work, socializing, ating out), and whether he/she would like that level to be igher, lower, or unchanged. The degree of change desired, if ny, is not assessed; however, one can imagine that having lightly less than one’s ideal affects SWB less than having lmost nothing. Although the technique works for concrete ctivities and possessions, it is difficult to see how it would be pplied to more abstract goods, such as those relevant to lanagan’s self-expression domain, without trivializing the oncept.

The phenomenon of response shift128 is increasingly invoked n the QOL literature to explain SWB changes or differences hat run counter to changes or differences in objective circum- tances (HRQOL, in the terminology adopted here). Response hift theory postulates that people adapt to the negative impacts f chronic illness or injury by changing their internal standards, alues, and even their conception of QOL. Through recalibra- ion (changing the “minima” and “maxima” on one’s internal cale for measuring, eg, pain and forgetfulness), reprioritiza- ion (modifying the relative importance of domains of life onsidered relevant to SWB), and reconceptualization (a com- lete overhaul of the domains that are considered relevant), eople may manage to live in circumstances that they would ave considered unacceptable before injury or disease, or that ould be reasons for low QOL estimates by people without a isorder. Response shift theory has much in common with lder theoretical perspectives familiar to rehabilitation special- sts, such as Wright’s “acceptance of loss theory.”129,130 No tudies were identified that applied this perspective in the study f QOL after TBI. The qualitative research by Nochi102 indi- ates that response shift is indeed a reality, at least among those ho succeed in living with TBI. Hill,100 in her autobiographical statement, emphasizes that

evere TBI is an event from which no recovery is possible, and hat it makes no sense to compare the TBI survivor with the erson he/she was before injury. To do so is self-defeating, she rgues, because the past always prevails, if for no other reason han that autobiographical memory is selective. One issue that

s not clear from the qualitative studies on the aftermath of TBI s when and how (if ever) a shift is made from “losses due to BI” to “achievements in spite of TBI.” Possibly an even more ignificant shift is from the “in spite of TBI” to “because of BI” that Nochi mentioned.102 One group of rehabilitation roviders has made such a shift in perspective, the lynchpin of heir TBI services. “We have rejected the view of rehabilitation s restoration of function. In our opinion, it makes little sense o ask clients who have an acquired brain injury to work as hard s they do in therapy in what is typically a vain attempt to ecapture their previous level of functioning and experiences” oted Maitz et al131(p7): “. . .we encourage patients to explore who they want to become’ rather than ‘who they have been in he past’ . . . unconstrained by their previous lifestyle, person- lity, and expectations of self and others.” This, of course, equires that the client can make a major shift in perspective: a reak with the past which seemingly adds to the loss of self. esponse shift and the development of changed selves and

dentities is an area ripe for qualitative and quantitative re- earch.

OL as Utility: Measurement Issues

The major claim for utility QOL measures is that they uantify preferences for various health states on a ratio scale, hich has several advantages, including the option to calculate ALYs. The comparison of benefits and cost benefits of alter- ative medical and rehabilitative interventions and public ealth policies is made easier, if not possible at all, by the vailability of the universal QALY currency. However, it ould seem that the existing utility measures lack sensitivity to

he differences between categories of people with TBI. For nstance, the QWB scale subtracts .340 (from perfect health set t 1.00) for “trouble learning, remembering, or thinking learly.” All 3 problems are fairly common in people with ild, moderate, or severe TBI. However, the severity of the

roblems typically varies between these groups, for example, rom a minor difficulty remembering where one put the car eys to total inability to learn any new material. Between these extremes, there is room for improvement from medication,

estorative rehabilitation, training in compensatory skills, or nvironmental changes (eg, use of calendars, diaries). How- ver, if the QWB were to be used as an outcome measure in tudies of such therapies, it would lack sensitivity unless the herapies completely eliminated the problem, which is unlikely.

Disease-specific utility measures have been developed for everal diagnostic groups,132,133 and it appears that develop- ent of such an instrument that is specific to TBI would be

seful. It should include functions most frequently affected by BI and the symptoms most commonly reported and most othersome to the patient and family. As such, a TBI-specific tility measure would facilitate studies that compare TBI pop- lations—for instance, studies comparing outcomes between raditional and contextual approaches with cognitive rehabili- ation.134 The results of research on HRQOL and SWB in TBI, s well as qualitative research on existential issues as experi- nced by people with TBI, might be a good basis for identify- ng crucial dimensions to be included, and the number and type f distinctions (categories) to be made within each domain. For tudies contrasting the cost-effectiveness of rehabilitation for eople with TBI and, for example, rehabilitation for people ith spinal cord injury, generic utility measures would be eeded. Obviously, these still might need to be modified to ake them more sensitive to the changes typically achieved in BI rehabilitation.

Arch Phys Med Rehabil Vol 85, Suppl 2, April 2004

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e o m Q n h s t l s m b e w

s s n a t o j w

o a

S32 QUALITY OF LIFE AFTER TRAUMATIC BRAIN INJURY, Dijkers

OL as Utility: Substantive Issues

Even though TBI is a leading cause of morbidity and dis- bility in the United States,135 with an estimated annual cost in 985 of more than $37 billion,136 there has been very limited esearch on the costs of various treatment programs and the ost benefits of alternative rehabilitation programs. As indi- ated previously, only 1 study was identified that used utility stimates to evaluate neurosurgical interventions. QALYs and ALYs have not been applied in the study of the outcomes, urdens, and economic costs of TBI. Although methodologic, ealth policy, and ethical and philosophic problems related to tilities exist, they are an accepted method of assessing QOL. here are data to suggest that, especially after mild and mod- rate TBI, there is significant lack of services, given the con- inuing need for them.137 It is unclear whether services are nderutilized because patients, their families, and professionals re unaware of them, or because of access problems, including nsurance coverage of relevant medical and rehabilitative ser- ices. It may be worthwhile to research to what degree the roblems and symptoms reported by these community-living ersons with TBI can be mitigated, at what costs, and what mprovement in QOL as utility are feasible, also at what costs.

second area for research is to compare the QOL of persons ith TBI with that of people with disorders of different etiol- gy; as of now, there are no estimates of the impact of TBI on OL, compared with other ill or injured population groups.

CONCLUSIONS

TBI, especially if moderate or severe in nature, has many ffects that threaten QOL. The 3 conceptualizations of QOL ffer different perspectives on the nature of the QOL decre- ent that may result. Knowledge of the impacts of injury on OL as achievements is extensive, although some areas have ot been researched adequately. QOL as subjective well-being as often been studied, although more is known about life atisfaction than about happiness and other mood states. Al- hough the life satisfaction of persons with TBI is generally ower than that of comparison groups, the differences are maller than one would expect. Response-shift phenomena ay play a role here. Finally, QOL as utility is an area that has

een studied minimally; there is no information on the prefer- nces society has on the death-to-perfect health scale for life ith TBI resulting in a variety of disablement types and levels. Research on QOL after TBI is hampered to some degree by

hortcomings in the existing QOL measures; however, the hortcomings may be less significant than other issues. Areas in eed of more research include changes in QOL over time and n explanation of QOL as SWB. In the latter area, a focus on he standards and priorities that people with TBI use, explicitly r implicitly, may have benefits. In this and other topic areas, udicious use of qualitative research before, or in conjunction ith, quantitative approaches is suggested.

Acknowledgments: Wayne Gordon, PhD, prepared the profiles n which table 5 is based. Ava Dorfman did literature searches, as well s edited and formatted the manuscript.

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Arch Phys Med Rehabil Vol 85, Suppl 2, April 2004

Quality of Life After Traumatic Brain Injury: A Review of Research Approaches and Findings

QOL AS ACHIEVEMENTS

Satisfying Work (Occupation)
Learning
Material Comforts
Close Relationship With a Significant Other, Having and Rearing Children
Relationships With Relatives
Having Close Friends; Socializing
Helping and Encouraging Others
Active and Passive Recreation
Participation in Public Affairs
Understanding Oneself
Expressing Oneself
Health and Personal Safety

QOL AS SWB
QOL AS UTILITY
QOL EXPERIENCED
RESEARCH NEEDS

Issues Cross-Cutting QOL Conceptualizations: Ability to Self-Report
Issues Cross-Cutting QOL Conceptualizations: Salience of Domains of Life
QOL as Achievements: Substantive Issues
QOL as Achievements: Measurement Issues
QOL as SWB: Measurement Issues
QOL as SWB: Substantive Issues
QOL as Utility: Measurement Issues
QOL as Utility: Substantive Issues

CONCLUSIONS

Acknowledgments
References