Social Participation Among Veterans With SCI/D: The Impact of Post Traumatic Stress Disorder Bella Etingen, PhD 1 ;Sara M. Locatelli, PhD 1 ;Scott Miskevics, BS 1 ; Sherri L. LaVela, PhD, MPH, MBA 1,2 1 Center of Innovation for Complex Chronic Healthcare, Edward Hines Jr. VA Hospital, Hines, Illinois, USA 2 Center for Healthcare Studies, Institute for Public Health and Medicine, General Internal Medicine and Geriatrics, Feinberg School of Medicine, Northwestern University, Chicago, Illinois, USA Paralyzed Veterans of America Summit 2016 Orlando, FL September 1, 2016
Disclosures To the best of our knowledge, no conflict of interest, financial or other, exists for any of the authors of this presentation. PESG and PVA staff have no interest to disclose. This continuing education activity is managed and accredited by Professional Education Services Group in cooperation with PVA. PESG, PVA, and all accrediting organization do not support or endorse any product or service mentioned in this activity. 1
Funding Acknowledgements Functional Needs Assessment in Persons with Spinal Cord Injuries and Disorders, RRP 13 248 (PI: Sherri L. LaVela, PhD, MPH, MBA) This study was supported by the Department of Veterans Affairs, Office of Research and Development, Health Services Research and Development Service, Quality Enhancement Research Initiative (RRP 13 248). The views expressed in this article are those of the authors and do not necessarily represent the views of the Department of Veterans Affairs or the United States government. 2
Learning Objectives At the conclusion of this activity, the participant will be able to: 1. Describe perceptions of social participation among Veterans with SCI/D. 2. Compare social participation in Veterans with SCI/D with and without co occurring PTSD. 3. Discuss low social participation as being independently associated with having PTSD in persons with SCI/D, when other factors which may impact participation (e.g., injury related variables) are controlled for. 3
Background: PTSD and SCI/D Events leading up to a spinal cord injury or disorder (SCI/D) are often traumatic Incident that caused the SCI or developing a potentially life threatening illness Experiencing (or witnessing) an event that can/does result in mortality and/or severe injury = traumatic event Military service increases risk for experiencing Moderate high rates of full scale and sub syndromal PTSD have been reported in persons with SCI/D For Veterans with SCI/D, risk of PTSD may be compounded by military experiences 4
Background: Social Participation and SCI/D Participation an important important part of community reintegration and overall rehabilitation following SCI/D The International Classification of Functioning, Disability and Health Model (ICF) categorizes participation as a distinct facet of a person s overall functioning Social participation is a major component Has various definitions in the literature, including: persons interactions with their social environment (Ullrich 2012, p. 159) Mental health concerns can impede optimal participation 5
Background: PTSD and Social Participation Many hallmark symptoms of PTSD may directly or indirectly impact social relationships, participation and/or interactions Decreased interest in previously enjoyed activities Irritable and/or aggressive behavior Feeling disconnected from other people Inhibited ability to experience positive emotions PTSD diagnostic criteria specifies that symptoms must cause clinically significant distress or impairment in social, occupational, or other important areas of function PTSD has been associated with difficulties with family, romantic and social relationships and employment PTSD symptoms coupled with difficulties related to SCI/D are likely to even further hinder social participation 6
Objectives (1) Examine differences in social participation among Veterans with SCI/D with and without PTSD (2) Determine if lower perceptions of participation were independently associated with having PTSD among Veterans with SCI/D 7
Methods: Survey Data Collection Design: Cross sectional mailed national survey of nationally dispersed Veterans with SCI/D Participants/Setting: Random sample of: Veterans with traumatic or non traumatic SCI/D Who received prior year VA health care (inpatient or outpatient) Data Collection: Occurred: late 2014 early 2015 Follow up mailing sent ~4 6 weeks later Surveys packets included a cover letter explaining the study and a postage paid business reply envelope Surveys returned by 896 Veterans (response rate: 61.7%) 8
Methods: Measures Demographics Gender Age (in years) Race/ethnicity Highest level of educational attainment Relationship status Usual living arrangement Injury Characteristics Level of injury Severity/completeness of injury Age at injury (in years) Duration of injury (in years) 9
Methods: Measures, Continued Select Health Conditions (experienced in the prior year, yes or no) Physical health/secondary conditions High blood pressure High cholesterol Diabetes Pressure sores Heart problems Problems with breathing/lungs Psychosocial conditions/ symptoms Pain Problems sleeping Depression PTSD 10
Methods: Measures, Social Participation Outcome Measure: Social Participation Measured using the Spinal Cord Injury Quality of Life (SCI QOL) Ability to Participate in Social Roles and Activities 10 item short form scale The SCI QOL is a bank of valid and reliable measurement scales/item banks Assess facets of health related quality of life Validated for use in the SCI population Normed for individuals with SCI Mean of 50 (standard deviation of 10) is representative of the general population of persons with SCI 11
Methods: Measures, Social Participation, Continued Ability to Participate in Social Roles and Activities Short Form Measures perceived level of social participation 10 items Response options on a 5 point scale Range: 1(never) to 5(always) Scores are calculated by: Summing the values corresponding to each response option Converting the raw score into a standardized t score All 10 questions must be answered for the scale to be scored Higher scores indicate greater perceived social participation 12
Methods: Measures, Social Participation, Continued Ability to Participate in Social Roles and Activities Items I can keep up with my family responsibilities I am able to socialize with my friends I can do everything for my friends that I want to do I am able to perform my daily routines I can keep up with my work responsibilities I am able to do all of the family activities that I want to do I am able to do all of the activities with friends that I want to do I can keep up with my social commitments I am able to do all of my regular leisure activities I can do all the leisure activities that I want to do 13
Methods: Statistical Analyses (Bivariate Comparisons) Bivariate comparisons By Veterans with SCI/D who having PTSD in the prior year vs. those who reported not having PTSD in the prior year We compared: Demographics & injury characteristics Health conditions Physical health/secondary conditions Psychosocial conditions/ symptoms Social participation Overall score Mean item responses 14
Methods: Statistical Analyses (Multivariate Logistic Regression) Model identified factors independently associated with PTSD when controlling for covariates, including social participation Complete data available for 589 Veterans = included in the model Covariates: Incomplete injury [ref: complete] Duration of injury [continuous] Paraplegic level of injury [ref: tetraplegia] White race/ethnicity [ref: Black/African American, Hispanic, Asian, Native Hawaiian/Pacific Islander, Other] Being a member of an unmarried couple [ref: married, separated/divorced, widowed, never married] Number of health conditions [continuous] Any level of college education [ref: did not complete elementary school, elementary, some high school, high school graduate] SCI QOL social participation score [continuous] 15
Results: Bivariate Comparisons Overall PTSD No PTSD p value *% unless otherwise indicated (n=896) (n=151) (n=745) Male Sex (n=881) 93.53 92.47 93.74 0.5671 Age (in years) (n=713) 63.19 61.89 63.45 0.1558 mean (range) standard deviation (25.00 94.00) 10.92 (31.00 91.00) 10.52 (25.00 94.00) 10.99 Race/ Ethnicity (n=884) 0.0011 White 72.40 60.67 74.80 0.0004 Black 17.53 22.67 16.49 0.0696 Hispanic 7.35 10.67 6.68 0.0879 All Other a 2.71 6.00 2.04 0.0066 Education: Any College b (n=892) 71.75 77.33 70.62 0.0958 Marital Status (n=892) 0.1094 Married 56.39 55.33 56.60 0.7747 Member of a Couple 2.80 5.33 2.29 0.0395 Separated/Divorced 22.76 24.67 22.37 0.5410 Widowed 7.17 8.00 7.01 0.6677 Never Married 10.87 6.67 11.73 0.0695 a Asian, Native Hawaiian/Pacific Islander, Other B Did Not Complete Elementary School, Elementary (Grades 1 Through 8), Some High School (Grades 9 Through 11), High School Graduate (Grade 12 or GED) 16
Results: Bivariate Comparisons, Continued *% unless otherwise indicated Overall (n=896) PTSD (n=151) No PTSD (n=745) p value Living Arrangement (n=891) 0.4213 Live alone 22.67 24.50 22.30 0.5552 Live with family, friend, spouse/other 70.71 66.89 71.49 0.2578 Live with formal (hired/paid) caregiver/other 6.62 8.61 6.22 0.2812 Average distance from health care facility (miles) (n=838) mean (range) standard deviation 56.14 (0.00 2650.00) 112.00 44.30 (1.00 300.00) 51.35 58.47 (0.00 2650.00) 120.30 0.1743 Average travel time to health care facility (minutes) (n=851) mean (range) standard deviation 75.27 (2.00 3000.00) 120.35 69.61 (8.00 480.00) 64.10 76.39 (2.00 3000.00) 128.60 0.5430 17
Results: Bivariate Comparisons, Continued Overall PTSD No PTSD p value *% unless otherwise indicated (n=896) (n=151) (n=745) Level of injury (n=741) 0.8646 Para 62.62 63.28 62.48 Tetra 37.38 36.72 37.52 Completeness of injury (n=741) 0.0379 Incomplete 60.59 68.75 58.89 Complete 39.41 31.25 41.11 Age at injury (n=663) mean (range) standard deviation 40.81 (18.00 84.00) 15.94 43.07 (18.00 74.00) 14.41 40.34 (18.00 84.00) 16.20 0.0971 Duration of injury (years) (n=836) mean (range) standard deviation 22.84 (2.00 70.00) 1.97 19.30 (2.00 66.00) 13.96 23.58 (2.00 70.00) 15.71 0.0025 18
Results: Bivariate Comparisons, Continued Overall PTSD No PTSD p value *% unless otherwise indicated (n=896) (n=151) (n=745) Select Health Conditions (n=896) Psychosocial Symptoms /Conditions Pain 66.18 80.13 63.36 <0.0001 Problems sleeping 43.86 70.86 38.39 <0.0001 Depression 30.02 68.87 22.15 <0.0001 Post traumatic stress disorder 16.85 Physical Health/Secondary Conditions High blood pressure 38.73 39.07 38.66 0.9239 High cholesterol 24.55 31.79 23.09 0.0235 Diabetes 20.09 25.83 18.93 0.0536 Pressure sores 20.31 21.19 20.13 0.7683 Heart problems 10.94 18.54 9.40 0.0010 Problems with breathing/lungs 20.09 27.81 18.52 0.0094 Number of comorbid health conditions * (n=896) mean (range) standard deviation *Not including self reported prior year PTSD 2.75 (0.00 9.00) 1.87 3.84 (0.00 9.00) 1.82 2.53 (0.00 9.00) 1.80 <0.0001 19
Results: Bivariate Comparisons, Continued Social Participation Score (n=758) mean, (range), standard deviation Overall (n=896) 43.25 (25.10 61.10) 6.79 PTSD (n=151) 40.15 (25.10 61.10) 5.30 No PTSD (n=745) 43.89 (25.10 61.10) 6.89 p value <0.0001 Item Responses (mean) I can keep up with my family responsibilities (n=870) 3.68 3.24 3.76 <0.0001 I am able to socialize with my friends (n=875) 3.66 3.21 3.75 <0.0001 I can do everything for my friends that I want to do (n=874) 2.98 2.57 3.06 <0.0001 I am able to perform my daily routines (n=877) 3.63 3.22 3.72 <0.0001 I can keep up with my work responsibilities (n=786) 3.14 2.77 3.21 <0.0001 I am able to do all of the family activities that I want to do 3.15 2.63 3.26 <0.0001 (n=875) I am able to do all of the activities with friends that I want to 3.02 2.47 3.13 <0.0001 do (n=875) I can keep up with my social commitments (n=868) 3.31 2.79 3.41 <0.0001 I am able to do all of my regular leisure activities (n=876) 3.25 2.77 3.35 <0.0001 I can do all the leisure activities that I want to do (n=879) 3.04 2.55 3.14 <0.0001 20
Results: Multivariate Logistic Regression (n=589) Covariates OR CI 95 p value Completeness of injury [incomplete] 1.54 0.93 2.53 0.09 Duration of injury [continuous] 0.98 0.97 1.00 0.04 Level of injury [paraplegia] 1.19 0.73 1.94 0.48 Race [white] 0.62 0.38 1.01 0.05 Marital status [member of an unmarried couple] 1.36 0.35 5.23 0.66 Number of health conditions [continuous] 1.43 1.25 1.64 <.0001 Education [any college] 1.63 0.94 2.82 0.08 Social Participation Score [continuous] 0.94 0.90 0.98 0.003 21
Discussion: Social Participation and PTSD PTSD is associated with decreased social participation overall All social participation scale items were rated lower by Veterans with SCI/D who had PTSD than those who did not Items tapped into constructs related to: Socializing with family members and friends Engaging in leisure time activities Activities related to work. Specific symptoms of PTSD may limit capacity for meaningful and functional social participation/relationship development and maintenance 22
Discussion: Health Conditions and PTSD Having more number of prior year health conditions associated with greater odds of having PTSD Aligns with the evidence that PTSD is associated with increased likelihood of a large number health conditions High rates of pain and depression among our sample Consistent with literature noting that chronic pain and depression are common in PTSD cohorts Specific to persons with SCI, depression and comorbid pain and PTSD = highly common Secondary health conditions (including pain) associated with lower participation among persons with SCI/D May be compounded by the association between PTSD and social participation, to hinder social participation in this population even further 23
Discussion: Injury Characteristics and PTSD Longer duration of injury associated with decreased odds of having PTSD Veterans with SCI/D who had PTSD were younger than those who did not Consistent with research noting that experiencing PTSD symptoms is negatively associated with duration of injury Persons with SCI/D may experience improvement in psychosocial adjustment as time goes on But, social participation becomes worse as time goes for individuals with SCI And, persons with SCI who sustain their injury at a younger age have better participation So, participation may decrease as age increases Treatment efforts to increase social participation among persons with SCI/D who have been living with their injury for many years or who are of older age may be beneficial, whether or not comorbid PTSD is observed 24
Discussion: Opportunities for Intervention Efforts to identify and treat PTSD are needed during and shortly after injury/rehabilitation, and also for persons who have been living with their SCI/D for longer periods of time It may be difficult for health care providers to balance and/or prioritize mental health treatment efforts with physical health care needs May be useful for providers to ask Veterans with SCI/D about previously existing and/or newly developed PTSD symptoms early in the patient/provider relationship Periodically follow up on an annual or semi annual basis Attempt to highlight and balance needed treatment efforts accordingly Intervention efforts should focus on: Improving familial and social relationships Reclaiming interest in and ability to engage in leisure activities that are important to and enjoyable for them 25
Conclusions In individuals with SCI/D, PTSD negatively impacts social participation These effects are independent from: Injury related factors Duration Severity Other factors that could impact participation in social activities 26
Implications Social participation is important for community integration and rehabilitation following SCI/D May positively impact individual s functioning, happiness and psychological well being PTSD should be screened for and treated in persons with SCI/D Regardless of: Injury specific factors Trajectory of rehabilitation Psychotherapy focused on improving social interactions among persons with PTSD may be beneficial for individuals with SCI/D who experience PTSD symptoms to improve social participation 27
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