Pdf/6/Supplement 1/125/2325434/4Fj8-3Vch-Ee0n-Hncd.Pdf by Guest on 02 October 2021 Functional Independence

Prevalence of Posttraumatic Stress Disorder in Patients with Pediatric

Spinal Cord Injury: Relationship to Downloaded from http://meridian.allenpress.com/tscir/article-pdf/6/Supplement 1/125/2325434/4fj8-3vch-ee0n-hncd.pdf by guest on 02 October 2021 Functional Independence

Bret A. Boyer, Michelle L. Knolls, Christina M. Kafkalas, and Lawrence G. Tollen

Posttraumatic stress (PTS) symptoms were assessed in individuals with pediatric spinal cord injury (SCI) and were evaluated for their relationship to functional independence. Participants were 64 individuals, ages 11– 24, with pediatric SCI. Posttraumatic stress was measured using the Posttraumatic Diagnostic Scale (PDS; for patients ≥18) and the Child Posttraumatic Stress Scale (CPSS; for patients < 18). The POSNA Pediatric Musculoskeletal Functional Health Questionnaire evaluated functional independence. Sixteen (25.4%) participants met DSM–IV criteria for current posttraumatic stress disorder (PTSD). PTS severity correlated with all POSNA subscales and global function, and PTSD diagnosis was significantly related to two POSNA subscales, as well as global function. PTS/PTSD appears to be prevalent in individuals with pediatric SCI and was also associated with poorer functional independence. Key words: functional independence, pediatric, posttraumatic stress, posttraumatic stress disorder, rehabilitation, spinal cord injury

he prevalence of spinal cord injuries very little is known about the relationship of (SCIs) in children and adolescents is these PTS symptoms to the outcomes of T estimated in the range of 525 to rehabilitation.4 1,124 per million population.1 As such, pedi- PTSD, as defined by the Diagnostic and atric SCI is not a tremendously common Statistical Manual of Mental Disorders, 4th condition in the general public. Neverthe- ed. (DSM–IV),5 is an anxiety disorder that less, it constitutes an extremely debilitating, develops in response to an extreme traumatic potentially life-threatening, condition and stressor, in which the individual experiences presents patients with a demanding and the threat of death or serious injury to one- costly course of rehabilitation and self-care. The most common causes of pediatric SCI are motor vehicle accidents (MVAs), sports Bret A. Boyer, PhD, is Director, The Family Health Psychology Center, Darby, Pennsylvania, and is Di- accidents, and violence (respectively), with rector, Division of Behavioral Medicine, Mercy the numbers of SCI from violence rising Fitzgerald Hospital, Darby, Pennsylvania. increasingly in recent years.1 Despite evi- Michelle L. Knolls, MA, is Research Project Coordi- dence that posttraumatic stress disorder nator, Shriners Hospitals for Children, Philadelphia, (PTSD) follows many of the events that in- Pennsylvania. duce SCI, PTSD associated with pediatric Christina M. Kafkalas, BS, is Research Project Coor- SCI has been largely uninvestigated. Several dinator, Shriners Hospitals for Children, Philadel- pilot studies have evaluated PTSD in the phia, Pennsylvania. pediatric SCI population and have reported Lawrence G. Tollen, BA, is Research Assistant, 2– current PTSD in 30.6%–37.8% of patients. Shriners Hospitals for Children, Philadelphia, Penn- 4 Although these studies suggest that PTSD sylvania. may be much more prevalent in patients with Top Spinal Cord Inj Rehabil 2000;6(suppl):125–133 pediatric SCI than previously appreciated, © 2000 Thomas Land Publishers, Inc.

125 126 TOPICS IN SPINAL CORD INJURY REHABILITATION/SUMMER 2000/SUPPLEMENT

self, a loved one, or other person. The term posttraumatic stress (PTS) will be used

individual’s response to this stressor must to signify posttraumatic symptomatology, Downloaded from http://meridian.allenpress.com/tscir/article-pdf/6/Supplement 1/125/2325434/4fj8-3vch-ee0n-hncd.pdf by guest on 02 October 2021 involve intense fear or horror and/or help- regardless of whether these symptoms meet lessness. To meet the DSM–IV criteria for criteria for PTSD. The term posttraumatic PTSD, the individual must experience suffi- stress disorder (PTSD) will be used to sig- cient symptoms in each of the three follow- nify a diagnostic level and pattern of PTS. ing symptom clusters: (1) intrusive reexperi- It was anticipated that patients’ PTS encing (i.e., intrusive and distressing symptoms, such as avoidance, may pose sig- recollections, flashbacks, nightmares, reac- nificant barriers to active engagement and tivity to stimulus conditions that remind the progress in rehabilitation. This study evalu- individual of the traumatic stressor); (2) ated the prevalence of PTSD in a larger avoidance of stimulus conditions that remind sample than those previously reported and the individual of the trauma, and numbing of investigated relationships between PTS/ the individual’s general responsiveness (i.e., PTSD and functional independence (FI). It avoiding the thoughts, memories, and feel- was hypothesized that patients with greater ings, as well as people, places, and activities severity of PTS would report more impaired that remind the individual of the trauma; FI and that patients with current PTSD would detachment; estrangement; reduced range of report more impaired FI than those without affect; a sense of a foreshortened future); and PTSD. (3) persistent symptoms of increased arousal (i.e., irritability and anger, difficulty sleeping or concentrating, hypervigilance, exagger- Method ated startle response). In addition, these symptoms must be present for at least 1 Participants month and must pose clinically significant The participants were 64 individuals with distress or impairment in functioning. pediatric SCI (59% males, 41% females) Individuals may experience distressing receiving treatment from Shriners Hospitals and clinically significant levels of posttrau- for Children in Philadelphia. At the time of matic stress (PTS) symptoms, without meet- assessment, patients ranged in age from 11– ing the full criteria for a PTSD diagnosis. 24 years (M = 17.5, SD = 3.8). The average Attention to subdiagnostic, yet distressing, age of the patient at injury was 11.6 years (SD levels of posttraumatic stress is of clinical = 5.5), and time since injury ranged from 4 importance.6 Throughout this article, the months to 19 years postinjury (M = 5.9, SD = 4.4). Over 92% of the patients were Cauca- sian, 4% were African American, 2.7% were Hispanic, and 1.3% were of other ethnic It was anticipated that patients’ PTS backgrounds. Patients represented a wide symptoms, such as avoidance, may geographic area, including 26 states, Puerto pose significant barriers to active Rico, Canada, and Eastern Europe. Paraple- engagement and progress in gic injuries (T1 or lower) were sustained by rehabilitation. 54.7% of the patients and tetraplegic injuries (C8 or higher) were sustained by 45.3% of Posttraumatic Stress Disorder 127

the patients. The events causing the SCI were Posttraumatic stress

as follows: 46.7% resulted from MVAs, Downloaded from http://meridian.allenpress.com/tscir/article-pdf/6/Supplement 1/125/2325434/4fj8-3vch-ee0n-hncd.pdf by guest on 02 October 2021 26.7% from diving/sports accidents or falls, The Posttraumatic Diagnostic Scale7 is a 16% from medical diseases or injuries sus- 49-item self-report measure, designed spe- tained at birth, 6.7% from gunshot wounds or cifically to correspond with the DSM–IV other violence, and 4% from unknown eti- criteria for PTSD, that assesses posttrau- ologies. matic stress reactions in adults. It was used here for patients 18 and older. The instrument Procedure provides both dichotomous (Number of Patients had to meet the following three Symptoms Endorsed) and continuous (Symp- criteria to be included in the study: (1) SCI tom Severity Score) data for each DSM–IV was sustained as a child or adolescent, (2) symptom cluster. For the purposes of this patient was fluent in the English language, study, only sections 3 and 4 (items 22–49) and (3) patient was aged 11–24 years. An were used. Section 3 has 17 items that corre- initial cover letter was mailed to the 257 spond with each symptom outlined in the patients who met all of the aforementioned DSM–IV PTSD criteria. Each item asks re- criteria, and a postage-paid return postcard spondents to rate on a 4-point scale how often was included for patients who wanted to they have been bothered by a specific symp- decline participation. Of those 257, 47 tom in the past month. Symptom Severity (18.3%) patients could not be located, 6 Scores range from 0–51, with higher scores (2.3%) had died since contact with the hospi- indicating a greater degree of symptomatol- tal, and 7 (2.7%) requested to be excluded ogy. Section 4 consists of nine items listing from the study. The remaining 197 patients areas of life that might be affected by PTS received questionnaire packets through the symptoms (e.g., work, household responsi- mail and were instructed to read and sign the bilities, relationships with family and informed consent and to return completed friends, general satisfaction, etc). Respon- questionnaires in the postage-paid envelope. dents are asked to mark yes or no as to Reminder letters were mailed to the whether the symptoms have interfered with nonrespondents, and follow-up phone calls their functioning in each area. Alpha coeffi- were conducted when necessary. An addi- cients were calculated for internal consis- tional 13 people (6.5%) declined participa- tency8 and are as follows: .92 for Total Symp- tion during follow-up phone calls. Finally, tom Severity, .78 for Reexperiencing, .84 for one family had to be excluded after com- Avoidance, and .84 for Arousal. The PDS pleted data were returned because the was also compared to the Structured Clinical patient’s diagnosis was not SCI. The final Interview for the DSM–III–R (SCID), and an sample used for these analyses represents a agreement rate of 82% was found between 32.5% return rate. the two measures. The Child PTSD Symptom Scale9 (CPSS) Measures is a 17-item self-report measure based on the Patients’ date of birth, date of injury, cause PDS and is modified to be developmentally of injury, level of injury, gender, and race appropriate for children 8 years old and were collected from medical records. older. The CPSS was used here for patients 128 TOPICS IN SPINAL CORD INJURY REHABILITATION/SUMMER 2000/SUPPLEMENT

who were 11–17 years old. The CPSS re- the DSM–IV criteria for current PTSD. The

spondents indicate the degree of each symp- number and percentage of patients meeting Downloaded from http://meridian.allenpress.com/tscir/article-pdf/6/Supplement 1/125/2325434/4fj8-3vch-ee0n-hncd.pdf by guest on 02 October 2021 tom using the same 4-point Likert-type scale the diagnostic criteria for each of the symp- used in the PDS, but they report their symptom clusters (Reexperiencing, Avoidance, toms for the last 2 weeks rather than the past Arousal) and clinically significant impair- month. There were also six yes/no questions ment are reported as well. Clinical diagnoses added to the survey about whether the symp- for the clusters were determined using the toms interfered with daily functioning in DSM–IV criteria, which states that individu- certain areas. Alpha coefficients for internal als must endorse at least 1 of 5 Reexperienc- consistency range from .70 to .89, and the ing symptoms, 3 of 7 Avoidance symptoms, scale correlates .80 with other measures of and 2 of 5 Arousal symptoms.5 To determine child PTSD.9 whether participants met the clinical diag- For both the PDS and CPSS, respondents noses for PTSD, all items were reduced to were instructed to answer items regarding binary scores (response of 0 was coded 0, all their symptomatology related specifically to other responses were coded 1) and were the SCI. The injury was framed in a compre- calculated for sufficient severity/frequency hensive sense, however, to include the event to meet the DSM–IV criteria for each symp- causing the SCI and the resulting injury. tom cluster and overall PTSD/partial PTSD. Partial PTSD has been defined as symp- Functional independence toms meeting criteria for two of the three The POSNA Pediatric Musculoskeletal symptom clusters (Reexperiencing, Avoid- Functional Health Questionnaire10 is a self- ance, Arousal).6 With the addition of clini- report measure of physical functioning, cally significant Impairment in Functioning with the following subscales: Upper Ex- as a diagnostic criteria in the DSM–IV, au- tremity Function, Physical Function and thors have extended this definition of partial Sports, Pain/Comfort, Transfers and Mobil- PTSD to require three of the four criteria ity, Expectations, and Happy and Satisfied. (Reexperiencing, Avoidance, Arousal, Im- For the present study, only the Upper Ex- pairment in Functioning).3,4 Because profes- tremity Function, Physical Function and sional consensus regarding the definition of Sports, Pain/Comfort, and Transfers and partial PTSD remains unclear, each of the Mobility subscales were used. These four following will be presented: (1) the number subscales were also summed to create a and percentage of patients meeting 2 of the 3 Global Function and Comfort score. The symptom clusters, (2) the number and per- instrument has been reported to show excel- centage of patients meeting 3 of 4 DSM–IV lent internal reliability (>.80 for all scales diagnostic criteria (Reexperiencing, Avoid- used in this study).9 Scores for all scales ance, Arousal, Impairment in Functioning), range from 0–100, with higher scores repre- and (3) the number and percentage of pa- senting better functioning. tients reporting clinically significant Impair- ment in Functioning. Data analysis To assess the degree of relationship be- Prevalence of PTSD is reported in the tween PTS severity and Functional Indepen- numbers and percentage of patients that meet dence, Pearson product moment correlations Posttraumatic Stress Disorder 129

were calculated between total PTS score (31.3%) met the criteria for partial PTSD (2

(sum of all CPSS or PDS items) and each of out of 3 symptom clusters). Using the partial Downloaded from http://meridian.allenpress.com/tscir/article-pdf/6/Supplement 1/125/2325434/4fj8-3vch-ee0n-hncd.pdf by guest on 02 October 2021 the four FI subscales. Total PTS was also PTSD criteria for the DSM–IV (3 of 4 diag- correlated with the global FI score. Because nostic criteria), diagnostic levels were met by the direction of the relationship was hypoth- 13 (20.9%) patients after excluding the 16 esized, all correlations are reported as one- that met the full PTSD criteria. The number tailed. of patients scoring in clinical levels for each To test for differences in FI between pa- of the three symptom clusters and Impair- tients with and without PTSD, a multivariate ment in Functioning are as follows: 37 pa- analysis of variance (MANOVA) was con- tients (57.8%) met criteria for Reexperienc- ducted, using PTSD diagnosis as an indepen- ing; 32 patients (50%) met criteria for dent variable and global FI and FI subscales Avoidance; 38 patients (59.4%) for Arousal; as dependent variables. and 30 patients (48.4%) reported Impairment in Functioning (see Fig. 1). Results The means, standard deviations, and minimum and maximum scores on the POSNA Total PTS scores ranged from 0 to 35, with Pediatric Musculoskeletal Functional Health a mean score of 9.5 (SD = 8.8). Sixteen Questionnaire scales are shown in Table 1. patients (25.4%) met the diagnostic criteria Pearson product moment correlations indi- for current PTSD. An additional 20 patients cated that there was a significant relationship

Fig 1. Percentage of patients reporting posttraumatic stress symptomatology. 130 TOPICS IN SPINAL CORD INJURY REHABILITATION/SUMMER 2000/SUPPLEMENT

Table 1. Summary statistics of patients’ scores on the POSNA Pediatric Musculoskeletal Functional Health Questionnaire scales Downloaded from http://meridian.allenpress.com/tscir/article-pdf/6/Supplement 1/125/2325434/4fj8-3vch-ee0n-hncd.pdf by guest on 02 October 2021

Scale Mean SD Minimum Maximum

Upper Extremity Function 77.7 29.7 0 100 Physical Function and Sports 23.8 18.6 0 83.3 Pain/Comfort 61.6 8.6 40 93.3 Transfers and Mobility 34.7 26.1 0 100 Global Function and Comfort 49.5 16.1 14 87.5

between total severity of PTS and FI. More ous pilot studies finding PTSD and clinically specifically, PTS severity was related nega- significant PTS in patients with pediatric tively to Upper Extremity and Function (r = SCI.2–4 When we compare the rates of PTS -.30, p ≤ .05), Physical Function and Sports (r symptomatology to depression following = -.38, p ≤ .01), Pain/Comfort (r = -.35, p ≤ SCI,11–14 PTSD and clinically significant PTS .01), Transfer and Mobility (r = -.31, p ≤ .01), appear to be as prevalent as depression and and Global Function and Comfort (r = -.42, p warrant aggressive screening and treatment. ≤ .001). This study is the first to investigate the A MANOVA was run to examine the possible relationship between PTSD and FI relationship between a clinical diagnosis of and to explore PTSD as a potential barrier to PTSD and FI. Results, shown in Table 2, effective rehabilitation. The degree of PTS indicated that PTSD diagnosis was signifi- was related significantly to poorer FI among cantly related to patient’s FI in 2 of the 4 FI these patients. Greater severity of PTS was subscales—Physical Function and Sports, associated with poorer overall functioning and Transfer and Mobility—as well as Glo- bal Function and Comfort.

Discussion Table 2. Relationship between posttraumatic One quarter of these pediatric SCI patients stress disorder and functional independence reported symptoms consistent with a current diagnosis of PTSD. In addition, another Scale Fa χ2 21%–32% reported partial PTSD (depend- Upper Extremity Function 2.51 .04 ing on which DSM criteria were used). Physical Function and Sports 8.5** .12 Therefore, about 46% of these patients ex- Pain/Comfort 2.16 .03 hibit partial PTSD or greater symptom- Transfers and Mobility 4.22* .07 atology, and an equal number (48%) report Global Function and Comfort 7.07** .10 impairment in functioning from these symp- adf = 1. toms. These data replicate the several previ- *p < .05. **p <.01. Posttraumatic Stress Disorder 131

and also with each of the four POSNA Pedi- resentation may be imperative, because ra-

atric Musculoskeletal Functional Health cial differences have been reported in de- Downloaded from http://meridian.allenpress.com/tscir/article-pdf/6/Supplement 1/125/2325434/4fj8-3vch-ee0n-hncd.pdf by guest on 02 October 2021 Questionnaire subscales assessed. As such, pression symptoms after SCI, with Latinos PTS appears related to poorer upper extrem- experiencing greater levels of depression ity function, sports and lower extremity than Caucasians.14 This sample did, how- function, and transfers and mobility and to ever, include patients from a wide geo- greater pain and discomfort. Patients report- graphic range and therefore is likely to ing diagnostic levels of PTSD had poorer include much cultural diversity. For that rea- global function, sports and lower extremity son, the findings may have greater gen- function, and transfers and mobility than eralizability than those from a geographi- those without PTSD. Comfort and upper cally localized sample. extremity function did not differ signifi- Third, all data collected here are self- cantly for those with and without PTSD. report measurements. In any future research, Based on these findings, FI may be more it may be useful to include observational data strongly related to overall severity of PTS for capabilities, such as the Functional Inde- than to PTSD diagnosis. These findings im- pendence Measure (FIM).15 There are sev- ply that PTS is not only more prevalent eral reasons why the investigators chose self- following pediatric SCI than previously rec- report measures for this study and why ognized, but may also be associated with self-report measures represent an important poorer outcomes of rehabilitation. component of any measurement strategy. Several limitations of this study are note- The investigators were interested in patients’ worthy. First, since the data was collected experience with functioning over time in cross-sectionally, any directionality of the their home environment, rather than their relationship between PTS and FI is unclear. absolute capabilities. In turn, PTS is a con- It may be that more impaired FI induces stellation of symptoms, many of which are greater risk of developing and maintaining covert experiences and can only be assessed PTSD. In contrast, patients who are more by patient’s report. Furthermore, longitudi- traumatized may experience greater anxiety, nal research with SCI outcomes has shown avoidance, and intrusive reexperiencing in self-report measures to be more sensitive to the rehabilitation setting and suffer poorer patients’ distress than objective measures.16 outcomes of rehabilitation. It is also possible For these reasons, self-report measures rep- that both are true, and a reciprocal relation- resent the most direct and appropriate mea- ship exists between PTS and FI. These phe- surement technique for these constructs. nomena cannot be investigated empirically Nonetheless, future research should investi- without a longitudinal study. gate the concordance between these self- Second, the sample evaluated here was report measures and other observational primarily Caucasian. Indeed, the rate of par- measures (e.g., the FIM) in order to guide ticipation from non-Caucasian patients was future measurement empirically. significantly lower than that of Caucasian Finally, this study reports only patients’ patients (t = 2.4, df = 202, p < .05). Assess- PTS. Parents of patients’ with pediatric SCI ment of samples with broader minority rep- also experience PTS,3,4 and family members’ 132 TOPICS IN SPINAL CORD INJURY REHABILITATION/SUMMER 2000/SUPPLEMENT

PTS and family functioning may also relate event has occurred.17 Therefore, PTS/PTSD

to patients’ FI. should be periodically reassessed over time Downloaded from http://meridian.allenpress.com/tscir/article-pdf/6/Supplement 1/125/2325434/4fj8-3vch-ee0n-hncd.pdf by guest on 02 October 2021 in the rehabilitation setting. Conclusion Future research should investigate the de- velopment and directionality of this relation- PTSD and clinically significant PTS ap- ship between PTS/PTSD and FI, as well as pear prevalent among adolescents and young variables that may serve to protect patients adults with pediatric SCI. Taken together from developing and maintaining PTSD. In- with previous research,2–4 PTSD may be ex- terventions for preventing and/or reducing perienced by 25%–38% of patients with pe- PTSD in individuals with pediatric SCI must diatric SCI. Furthermore, greater PTS and be evaluated for efficacy and should also be poorer FI are related. This finding may indi- assessed for their contribution to efficacy of cate that (1) more functional impairment rehabilitation and outcomes. may represent a risk for PTS/PTSD, (2) greater PTS/PTSD may represent a risk for Acknowledgements poorer functional outcomes, (3) other diagnostic/injury factors may pose risk for both We express heartfelt gratitude to the pa- PTS and poorer FI, or (4) some combination tients and parents that provided this data. of these phenomena. Special thanks are expressed to Mercedes Overall, these findings suggest that more Swartz, RN, and Veronica Morales, RN, for aggressive screening for PTS/PTSD should their assistance with the SCI database. This be included as part of the standard of care for research was supported by a grant from the psychosocial rehabilitation and maximally Shriners Hospitals for Children (#8510) to effective rehabilitation. Since PTS may rep- the first author. All work was conducted at resent a barrier to effective rehabilitation, the Shriners Hospitals for Children, Phila- PTS/PTSD should be assessed early in treat- delphia, Pennsylvania. Portions of these data ment. No relationship has been found be- were presented at the Howard H. Steele Con- tween time since injury and PTS,2–4 and there ference on Pediatric Spinal Cord Injury: is evidence that PTSD can sometimes have a Contemporary Principles and New Direc- delayed onset, with symptoms developing tions, December 3, 1999, in Rancho Mirage, many months, or even years, after a traumatic California.

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