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Sex, Gender, and Traumatic Brain Injury: A Commentary

  • Angela Colantonio
    Correspondence
    Corresponding author Angela Colantonio, PhD, OT, FACRM, FCAHS, Rehabilitation Sciences Institute, University of Toronto, 160-500 University Avenue, Toronto, Ontario M5G 1V7, Canada.
    Affiliations
    Rehabilitation Sciences Institute and Department of Occupational Science & Occupational Therapy, University of Toronto, Toronto, Ontario, Canada
    Toronto Rehabilitation Institute–University Health Network, Toronto, Ontario, Canada
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      Abstract

      The goal of this supplemental issue is to address major knowledge, research, and clinical practice gaps regarding the limited focus on brain injury in girls and women as well as limited analysis of the effect of sex and gender in research on acquired brain injury. Integrating sex and gender in research is recognized as leading to better science and, ultimately, to better clinical practice. A sex and gender analytical approach to rehabilitation research is crucial to understanding traumatic brain injury and improving quality of life outcomes for survivors. Put another way, the lack of focus on sex and gender reduces the rigor of research design, the generalizability of study findings, and the effectiveness of clinical implementation and knowledge dissemination practices. The articles in this supplement examine sex and gender using a variety of methodological approaches and research contexts. Recommendations for future research on acquired brain injury that consciously incorporates sex and gender are made throughout this issue. This supplement is a product of the Girls and Women with ABI Task Force of the American Congress of Rehabilitation Medicine.

      Keywords

      List of abbreviations:

      ABI (acquired brain injury), ACRM (American Congress of Rehabilitation Medicine), NIH (National Institutes of Health), TBI (traumatic brain injury)
      An audio podcast accompanies this article.
      As cochair of the Girls and Women with ABI Task Force of the American Congress of Rehabilitation Medicine (ACRM), I am honored to write the opening commentary for this unique supplemental issue on Sex, Gender, and Traumatic Brain Injury. This task force was a key outcome of an international workshop titled “Women with Traumatic Brain Injury: Advancing the Agenda for Health” held in 2010 at the ACRM Annual Meeting in Montreal, Canada. Attended by women with lived experience of brain injury, members of advocacy groups, clinicians, policymakers, funders, and researchers, the workshop
      • Harris J.E.
      • Colantonio A.
      • Bushnik T.
      • et al.
      Advancing the health and quality of life of girls and women after traumatic brain injury: workshop summary and recommendations.
      created a foundation for the task force, and eventually, for this special issue, by identifying a need to address research and knowledge gaps concerning women with acquired brain injury (ABI). We recognize Marilyn Spivack, the founding president of the Brain Injury Association of America, who advocated for the establishment of the task force. We are fortunate to have women with lived experience of brain injury on the task force to inspire and inform our work.
      Traumatic brain injury (TBI) is a chronic condition
      • Corrigan J.D.
      • Hammond F.M.
      Traumatic brain injury as a chronic health condition.
      that is highly gendered. To demonstrate, most moderate to severe brain injuries occur in men and typically result from engagement in high-risk activities, behaviors, and occupations historically considered suitable for men but not necessarily for women, such as professional contact sport, construction, or military occupations.
      • Cohen P.N.
      The persistence of workplace gender segregation in the US.
      • Chang V.C.
      • Ruseckaite R.
      • Collie A.
      • Colantonio A.
      Examining the epidemiology of work-related traumatic brain injury through a sex/gender lens: analysis of workers’ compensation claims in Victoria, Australia.
      • Chang V.C.
      • Guerriero E.N.
      • Colantonio A.
      Epidemiology of work-related traumatic brain injury: a comprehensive review.
      • Iverson K.M.
      • Hendricks A.M.
      • Kimerling R.
      • et al.
      Psychiatric diagnoses and neurobehavioral symptom severity among OEF/OIF VA patients with deployment-related traumatic brain injury: a gender comparison.
      • Raukar N.P.
      • Zonfrillo M.R.
      • Kane K.
      • et al.
      Gender- and sex-specific sports-related injury research in emergency medicine: a consensus on future research direction and focused application.
      Consequently, examining the effects of gender and sex on etiology and outcomes has typically been absent in research on TBI. Yet TBI is gendered for women as well: women, for example, are more susceptible than men to TBI caused by physical violence in interpersonal relations,
      • Corrigan J.D.
      • Wolfe M.
      • Mysiw W.J.
      • Jackson R.D.
      • Bogner J.A.
      Early identification of mild traumatic brain injury in female victims of domestic violence.
      • Kwako L.E.
      • Glass N.
      • Campbell J.
      • Melvin K.C.
      • Barr T.
      • Gill J.M.
      Traumatic brain injury in intimate partner violence: a critical review of outcomes and mechanisms.
      or in typically “female” occupations such as in health care.
      • Chang V.C.
      • Guerriero E.N.
      • Colantonio A.
      Epidemiology of work-related traumatic brain injury: a comprehensive review.
      Moreover, few studies
      • Saverino C.
      • Swaine B.
      • Jaglal S.
      • et al.
      Rehospitalization after traumatic brain injury: a population based study.
      • McKinlay A.
      • Grace R.C.
      • Horwood L.J.
      • Fergusson D.M.
      • Ridder E.M.
      • MacFarlane M.R.
      Prevalence of traumatic brain injury among children, adolescents and young adults: prospective evidence from a birth cohort.
      have focused primarily on women, despite the significant number of girls and women with brain injury. Epidemiological studies
      • Saverino C.
      • Swaine B.
      • Jaglal S.
      • et al.
      Rehospitalization after traumatic brain injury: a population based study.
      • Faul M.
      • Xu L.
      • Wald M.M.
      • Coronado V.G.
      Traumatic brain injury in the United States: emergency department visits, hospitalizations and deaths 2002-2006.
      generally report that women sustain approximately a third of TBIs based on hospitalization data. However, almost comparable or even higher rates of TBI occur in older women,
      • Albrecht J.S.
      • Hirshon J.M.
      • McCunn M.
      • et al.
      Increased rates of mild traumatic brain injury among older adults in US Emergency Departments, 2009-2010.
      and there is both greater awareness and reporting of concussions sustained through sports in girls and women.
      • Raukar N.P.
      • Zonfrillo M.R.
      • Kane K.
      • et al.
      Gender- and sex-specific sports-related injury research in emergency medicine: a consensus on future research direction and focused application.
      It is, therefore, increasingly necessary to address the effect of sex and gender on all aspects of TBI to produce better scientific knowledge and provide more effective sensitive health care to women and men, boys and girls.
      What do we mean by “sex” and “gender”? At a most basic meaning, they can refer to the number of male patients/men and female patients/women counted in a data set or study sample, and controlling for other variables, using these quantitative data to infer “sex” or “gender” differences in measured outcomes. It is not uncommon to see the terms sex and gender used interchangeably in the literature; researchers often struggle with understanding and correctly applying these concepts, but these terms are not synonymous. The Canadian Institutes for Health Research

      Canadian Institutes of Health Research–Institute of Gender and Health. Definitions of sex and gender. Available at: http://www.cihr-irsc.gc.ca/e/47830.html. Updated June 17, 2015. Accessed December 16, 2015.

      and the National Institutes of Health (NIH)

      National Institutes of Health–Office of Research on Women’s Health. The science of sex and gender in human health: online course site. Available at: https://sexandgendercourse.od.nih.gov/. Accessed December 16, 2015.

      refer to sex as the biological and physiological characteristics that distinguish male bodies from female bodies and encompasses, for instance, anatomy, physiology, genes, and hormones. Gender is described as a social construct that is culturally based and historically specific and is thus constantly changing. It refers to the socially prescribed dimensions of “femininity” and “masculinity” in any given society and is manifested at many levels: roles (behavioral norms and expectations), identities (how we see ourselves), and relations (how we interact with one another). The World Health Organization

      World Health Organization. Social determinants of health: women and gender equity. Available at: http://www.who.int/social_determinants/themes/womenandgender/en/. Accessed December 16, 2015.

      considers gender to be a social determinant of health because in most societies, women have less power and privilege, and hence less access to health care resources, than do men. The relation between sex and gender is complex. Sex-based (eg, biological) factors and gendered social factors mutually affect and shape health behaviors, opportunities, and outcomes
      • Krieger N.
      Genders, sexes, and health: what are the connections—and why does it matter?.
      ; thus, it may be more appropriate to refer not to sex or gender but to sex/gender to adequately capture this complexity. In relation to TBI, implications of the interaction between these variables for injury etiology, rehabilitation potential, and tailored rehabilitation activities may include addressing differential physiological or anatomical experiences of pain/agitation and potentially stressful interactions with care providers affected by gender relations or questioning expectations associated with the effect of impairments on child care or work obligations.
      A focus on sex and gender in research is particularly timely in light of policy statements by the NIH.
      • Clayton J.A.
      • Collins F.S.
      NIH to balance sex in cell and animal studies.
      The NIH introduced specific guidelines that require both sexes to be included in cell and animal preclinical research. In hindsight, it seems incredulous that the norm in basic science studies, until now, has been the exclusive use of male rodents and cells. A failure to include both sexes in human subject studies has been shown to produce study results and clinical practices that are not only ineffective but are also harmful, particularly to women.
      • Clayton J.A.
      • Collins F.S.
      NIH to balance sex in cell and animal studies.
      Our special issue is based not on basic science, but on clinical research on TBI, where there is still a paucity of reporting on studies that consider how the interconnections between sex and gender can affect health for men and women, boys and girls. The systematic review by Cancelliere et al
      • Cancelliere C.
      • Donovan J.
      • Cassidy J.D.
      Is sex an indicator of prognosis after mild traumatic brain injury: a systematic analysis of the findings of the World Health Organization Collaborating Centre Task Force on Mild Traumatic Brain Injury and the International Collaboration on Mild Traumatic Brain Injury Prognosis.
      on mild TBI outcomes found, in fact, that only 7% of >200 studies reviewed provided data stratified by sex. It is difficult to draw conclusions on differences or similarities by sex/gender when so little stratified data are routinely published. Groups such as the Cochrane Collaboration have a checklist devoted to incorporating such an analysis into systematic reviews: the “Sex and gender in systematic reviews: Planning tool” exists to address this research gap.

      The Cochrane Collaboration–Sex and Gender Methods Group. Why sex and gender matter in systematic reviews. Available at: http://equity.cochrane.org/sex-and-gender-analysis. Accessed December 16, 2015.

      Although it is well documented that the inclusion of sex/gender contributes to quality science as well as to better inform health policies and treatments,
      • Johnson J.L.
      • Greaves L.
      • Repta R.
      Better science with sex and gender: facilitating the use of a sex and gender-based analysis in health research.
      • Sharman Z.
      • Johnson J.
      Towards the inclusion of gender and sex in health research and funding: an institutional perspective.

      National Institutes of Health–Office of Research on Women’s Health. What’s the difference? Sex and gender influences on health and disease from A to Z. Available at: http://orwh.od.nih.gov/resources/sexgenderhealth/index.asp. Accessed December 16, 2015.

      there are relatively few examples of applying this framework to research on both TBI and non-TBI; this lack reduces the rigor of research design, the generalizability of study findings, and the effectiveness of knowledge dissemination practices. A sex and gender analytical approach is crucial to understanding and preventing TBI and ultimately to improving quality of life outcomes for survivors; its relevance to TBI research has both substantive and methodological importance.
      • Wright D.W.
      • Espinoza T.R.
      • Merck L.H.
      • Ratcliff J.J.
      • Backster A.
      • Stein D.G.
      Gender differences in neurological emergencies, part II: a consensus summary and research agenda on traumatic brain injury.
      This issue presents studies that focus specifically on women (filling a wide knowledge gap), that examine data by sex/gender (documenting potential differences and similarities), and that apply a sex/gender framework to their analysis (looking at how social structures affect a variety of outcomes). Importantly, these articles demonstrate the challenges of grappling with these concepts within the larger body of rehabilitation research. I hope that this issue serves as a point of reference for continued research in this area. There is much work to be done both methodologically and substantively with respect to advancing sex/gender research, not only for TBI but also for all areas of rehabilitation research.
      Saverino et al
      • Saverino C.
      • Swaine B.
      • Jaglal S.
      • et al.
      Rehospitalization after traumatic brain injury: a population based study.
      examine sex/gender differences and similarities by using existing health care administrative data and quantitative methodologies. Their analyses of the causes of rehospitalizations reveal the importance of sex stratification: the authors show that female sex is a significant predictor of rehospitalizations in univariate analyses, while male sex is associated with rehospitalizations controlling for confounders such as age, injury severity, and comorbidities. This highlights an appreciation of intersectional vulnerabilities, such as age and sex. Cancelliere et al
      • Cancelliere C.
      • Donovan J.
      • Cassidy J.D.
      Is sex an indicator of prognosis after mild traumatic brain injury: a systematic analysis of the findings of the World Health Organization Collaborating Centre Task Force on Mild Traumatic Brain Injury and the International Collaboration on Mild Traumatic Brain Injury Prognosis.
      systematically analyzed studies that assessed the effect of sex/gender on outcomes after mild TBI in children and adults and found few studies that stratify data by sex (7%) and those that did show mixed results. Although they cautiously report that overall, sex is not a consistent or strong prognostic indicator of outcomes, they recommend further research and greater attention to biological and social factors that could have implications for differential management for men and women. This has great relevance given the widespread attention on concussions.
      Many large-scale surveys include the variable “sex,” with an assumption of a 1-to-1 correspondence between sex and gender (ie, male/masculine, female/feminine) and that both are binary constructs. These assumptions blur the complexity and diversity of the relations between and within these categories and create confusion for researcher and reader alike on how to interpret and apply findings. The paucity of instruments that adequately measure these constructs in large administrative databases is an area that needs attention. In the absence of such instruments, the construct of “gender” can be captured using a qualitative approach and this is reflected in several articles in this supplement. In our study of youth in transition,
      • Lindsay S.
      • Proulx M.
      • Maxwell J.
      • et al.
      Gender and transition from paediatric to adult care among youth with acquired brain injury: experiences in a transition model.
      girls and boys expressed different treatment preferences. In the article by Stergiou-Kita et al,
      • Stergiou-Kita M.
      • Mansfield E.
      • Sokoloff S.
      • Colantonio A.
      Gender influences on return to work after mild traumatic brain injury.
      a gender analysis adds to our understanding of return to work after work-related TBI and workplace accommodations. Haag et al
      • Haag H.L.
      • Caringal M.
      • Sokoloff S.
      • Kontos P.
      • Yoshida K.
      • Colantonio A.
      Being a woman with acquired brain injury: challenges and implications for practice.
      explore the experiences of women with ABI and caregivers, with a focus on encounters with care providers, physical changes, and sexuality. Other articles in this issue that use a quantitative methodology also advance our understanding of TBI in women at highly vulnerable time points. Nalder et al
      • Nalder E.
      • Fleming J.
      • Cornwell P.
      • et al.
      Sentinel events during the transition from hospital to home: a longitudinal study of women with traumatic brain injury.
      examine sentinel events, such as lack of therapy and return to occupation, that affect community integration during the transition from hospital to home for women. A long-term outcome study of service utilization in women by Toor et al
      • Toor G.K.
      • Harris J.E.
      • Escobar M.
      • et al.
      Long-term health service outcomes among women with traumatic brain injury.
      indicates the need for continuing support to address, or even prevent, long-term mental health conditions and the need for ongoing access to relevant services many years postinjury. An article by Despins et al
      • Despins E.H.
      • Turkstra L.S.
      • Struchen M.A.
      • Clark A.N.
      Sex-based differences in perceived pragmatic communication ability of adults with traumatic brain injury.
      addresses how patient-provider communication might be affected by sex/gender with implications for clinical practice.
      Even findings that do not quantitatively report sex/gender differences could still demonstrate critical experiential differences shaped by gender roles, identities, and norms. This knowledge needs to be exposed to advance our understanding of what is the same and what is different in the population with ABI. Although our focus in this special issue is often on women or on sex/gender differences, there is work to be done on men's health using a similar analytical framework as well. For instance, although depression is a common comorbidity after TBI for men, evidence suggests that our measures of depression do not fully capture the experience of depression in men.
      • Oliffe J.L.
      • Phillips M.J.
      Men, depression and masculinities: a review and recommendations.
      Gender role expectations might affect the degree or the manner in which depression is experienced and reported by men, necessitating gender-sensitive tools and treatments for depression.
      • Oliffe J.L.
      • Phillips M.J.
      Men, depression and masculinities: a review and recommendations.
      Finally, I advocate 2 strategies to ensure that sex/gender are incorporated into research on brain injury and rehabilitation science. First, specialized curriculum materials need to be included in all rehabilitation research and professional training. Several promising tools for training exist: “Gender-based analysis plus,”

      Government of Canada. Gender-based analysis plus. Available at: http://www.swc-cfc.gc.ca/gba-acs/index-en.html. Updated May 14, 2015. Accessed December 16, 2015.

      an online course offered by the Government of Canada, provides training and examples of how sex and gender intersect with other social, economic, and cultural factors. Excellent resources are also available on the Canadian Institutes for Health Research and the NIH Web sites,

      National Institutes of Health–Office of Research on Women’s Health. The science of sex and gender in human health: online course site. Available at: https://sexandgendercourse.od.nih.gov/. Accessed December 16, 2015.

      Canadian Institutes of Health Research—Institute of Gender and Health. Online training modules: integrating sex & gender in health research. Available at: http://www.cihr-irsc.gc.ca/e/49347.html. Updated September 2, 2015. Accessed December 16, 2015.

      both of which include free online courses on integrating sex/gender in biomedical research. This training should provide a foundation for the explicit consideration of sex/gender throughout the entire research process, from the literature review/research question phase to the knowledge translation plan. Second, I encourage peer-reviewed journals to adopt a sex and gender reporting requirement.
      • Gahajan J.
      • Gray K.
      • Whynacht A.
      Sex and gender matter in health research: addressing health inequities in health research reporting.
      In closing, I am pleased to present this supplement and hope the variety of topics and methodological approaches will inspire readers to further this important research.

      Acknowledgments

      I acknowledge the international group of authors for their thoughtful contributions to this groundbreaking topic. I thank Jeffrey Basford, MD, PhD, the Archives internal editor for this supplement, for his ongoing contributions and support; countless colleagues who reviewed manuscripts in this collection; and American Congress of Rehabilitation Medicine staff for their support of the Girls and Women with ABI Task Force that enabled bringing this collection to the Archives readership. H. Jane Warren, MBA, provided consumer-based input and editorial support for several of the manuscripts. Sandra Sokoloff, MLIS, provided indispensable editorial and administrative support for this introduction.

      Supplementary data

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