Profiles of Psychological Adaptation Outcomes at Discharge From Spinal Cord Injury Inpatient Rehabilitation

Journal Pre-proof Profiles of psychological adaptation outcomes at discharge from spinal cord injury inpatient rehabilitation Mayra Galvis Aparicio, MSc, Valérie Carrard, PhD, Davide Morselli, PhD, Marcel W.M. Post, PhD, Claudio Peter, PhD, the SwiSCI Study Group PII:

S0003-9993(19)31112-8

DOI:

https://doi.org/10.1016/j.apmr.2019.08.481

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YAPMR 57669

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ARCHIVES OF PHYSICAL MEDICINE AND REHABILITATION

Received Date: 30 July 2019 Accepted Date: 17 August 2019

Please cite this article as: Aparicio MG, Carrard V, Morselli D, Post MWM, Peter C, the SwiSCI Study Group, Profiles of psychological adaptation outcomes at discharge from spinal cord injury inpatient rehabilitation, ARCHIVES OF PHYSICAL MEDICINE AND REHABILITATION (2019), doi: https:// doi.org/10.1016/j.apmr.2019.08.481. This is a PDF file of an article that has undergone enhancements after acceptance, such as the addition of a cover page and metadata, and formatting for readability, but it is not yet the definitive version of record. This version will undergo additional copyediting, typesetting and review before it is published in its final form, but we are providing this version to give early visibility of the article. Please note that, during the production process, errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain. © 2019 Published by Elsevier Inc. on behalf of the American Congress of Rehabilitation Medicine

Running head: Spinal Cord Injury Adaptation Profiles Title: Profiles of psychological adaptation outcomes at discharge from spinal cord injury inpatient rehabilitation Authors: Mayra Galvis Aparicio, MSc1,2, Valérie Carrard, PhD1,2, Davide Morselli, PhD 3, Marcel W.M. Post, PhD 4,5, Claudio Peter, PhD 1,2, and the SwiSCI Study Group 1. Department of Health Sciences and Health Policy, University of Lucerne, Lucerne, Switzerland 2. Swiss Paraplegic Research (SPF), Nottwil, Switzerland 3. Swiss National Center of Competence in Research LIVES, University of Lausanne, Switzerland 4. Center of Excellence for Rehabilitation Medicine, Brain Center Rudolf Magnus, University Medical Center Utrecht and De Hoogstraat, Utrecht, The Netherlands 5. University of Groningen, University Medical Center Groningen, Department of Rehabilitation Medicine, Groningen, the Netherlands. Presented at the 32nd Annual Conference of the European Health Psychology Society, August 23, 2018, Galway, Ireland, and at the 8th Conference of the European Spinal Psychologists Association, March 21, 2019, Zürich, Switzerland. Funding: This study has received financial support from the Swiss National Science Foundation, SNSF (Grant No. 100019_165484). Acknowledgments:

This study has been conducted in the framework of the Swiss Spinal Cord Injury Cohort Study (SwiSCI, www.swisci.ch ), supported by the Swiss Paraplegic Foundation. The members of the SwiSCI Steering Committee are: Xavier Jordan, Bertrand Léger (Clinique Romande de Réadaptation, Sion); Michael Baumberger, Hans Peter Gmünder (Swiss Paraplegic Center, Nottwil); Armin Curt, Martin Schubert (University Clinic Balgrist, Zürich); Margret Hund-Georgiadis, Kerstin Hug (REHAB Basel, Basel); Thomas Troger (Swiss Paraplegic Association, Nottwil); Daniel Joggi (Swiss Paraplegic Foundation, Nottwil); Hardy Landolt (Representative of persons with SCI, Glarus); Nadja Münzel (Parahelp, Nottwil); Mirjam Brach, Gerold Stucki (Swiss Paraplegic Research, Nottwil); Christine Fekete (SPF Coordination Group at Swiss Paraplegic Research, Nottwil). Disclosure of interest: None. Corresponding Author and request for reprints: Dr Valerie Carrard Swiss Paraplegic Research Guido A. Zäch Strasse 4, 6207 Nottwil, switzerland +41 41 939 6587 [email protected]

1

PROFILES OF PSYCHOLOGICAL ADAPTATION OUTCOMES AT DISCHARGE

2

FROM SPINAL CORD INJURY INPATIENT REHABILITATION

3

Objective: To evaluate the impact of a newly acquired Spinal Cord Injury by identifying

4

profiles of psychological adaptation outcomes at discharge from inpatient rehabilitation,

5

using several outcome measures in parallel and to examine biopsychosocial factors associated

6

with profile membership.

7

Design: Cross-sectional analysis of data from the National Cohort Study (name edited for

8

blind review).

9

Setting: Inpatient Rehabilitation.

10

Participants: 370 individuals 16 years old or older with recently diagnosed SCI, who

11

finished clinical rehabilitation in one of the four major national rehabilitation centers.

12

Interventions: Not applicable.

13

Main Outcome Measures: Life satisfaction, general distress, and symptoms of depression

14

and anxiety were assessed using a single item from the International SCI Quality of Life

15

Basic Data Set, the Distress Thermometer, and the Hospital Anxiety and Depression Scale

16

respectively.

17

Results: Using latent profile analysis, four profiles of psychological adaptation outcomes

18

were identified displaying different levels of impact, ranging from minimal to severe.

19

Regarding covariates associated with profile membership, higher optimism, purpose in life,

20

and self-efficacy indicated a higher probability of having a Minimal impact profile.

21

Additionally, males, individuals with better functional independence, and those with an

22

absence of pain were more likely to show a Minimal impact profile.

1

23

Conclusion(s): Amongst the participants, 70% showed Minimal or Low impact profiles. Our

24

findings support that individuals can show positive responses across several outcome

25

measures even at an early time after the injury onset (e.g. at discharge from inpatient

26

rehabilitation). Moreover, our results indicate that beyond functional independence,

27

improvement and pain management, a rehabilitation process that strengthens psychological

28

resources might contribute to better adaptation outcomes.

29

Keywords: Spinal cord injuries; Psychological Adaptation; Rehabilitation; Self-Efficacy;

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Optimism

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List of abbreviations

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BIC Bayesian Information Criterion

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BLRT Bootstrapped Likelihood Ratio Test

34

HADS Hospital Anxiety and Depression Scale

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LMR Lo-Mendell-Rubin likelihood ratio test

36

LPA Latent Profile Analysis

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NCS National Cohort Study (name edited for blind review)

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SCI Spinal Cord Injury

2

39

Spinal cord injury (SCI) is a life-changing event that demands a multidisciplinary

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rehabilitation process. Besides regaining functioning and independence, rehabilitation goals

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are restoring the psychological state of the injured individuals and preparing them for

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reintegration into the community [1,2]. Thus, the discharge from inpatient rehabilitation

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constitutes a key time point to evaluate how individuals are adapting to the challenges posed

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by their SCI.

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Psychological adaptation is a multidimensional and temporal process in response to adverse

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life events, which can lead to more or less positive outcomes [3]. These outcomes indicate the

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extent of the impact of the stressful event on individuals’ lives at a certain point in time. As

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posited in theoretical models such as Livneh and Antonak’s Adaptation to Chronic Illnesses

49

and Disabilities Model [4] or the SCI adjustment model [5,6], psychological adaptation

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outcomes are influenced by multiple biopsychosocial covariates that can act as resources or

51

as stressors.

52

Substantial individual differences exist in how individuals adapt to SCI [7]. Although it has

53

been found that they are at higher risk for psychological disorders such as depression or post-

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traumatic stress disorder [7-9], longitudinal studies indicate that they may actually follow

55

different trajectories such as chronic distress or resilience [10-12]. Furthermore, sustaining an

56

SCI does not preclude the experience of happiness and satisfaction with life [7,13-15], nor the

57

perception of growth in different domains (e.g. perception of personal strengths) [16,17]. To

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understand this diversity of responses to SCI requires a shift in focus from overall outcome

59

mean scores, which may obscure individual differences, towards the application of person-

60

centered analyses that enable the identification of heterogeneous patterns of response [18,19].

61

Moreover, it demands the analysis of multiple psychological adaptation outcomes [20],

62

including the presence or absence of psychiatric symptoms in addition to indicators of well-

63

being [18,21]. Indeed, adapting to an SCI cannot be equated to the absence of mental health 3

64

problems [22], and the study of single outcomes disregards the multidimensionality of

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psychological adaptation because critical life events can have a differential impact on various

66

well-being dimensions [20,23]. For instance, it has been found that after the loss of a loved

67

one (e.g. partner, child), individuals may not show symptoms of depression and still have a

68

negative evaluation of their own life or experience low positive affectivity [20,24].

69

Simultaneously studying several outcome measures of mental health and well-being with

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person-centered analytical techniques such as latent profile analysis (LPA) enables a

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multidimensional understanding of psychological adaptation, featuring the heterogeneity of

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SCI’s psychological impact. These techniques can then be used to test the association

73

between covariates and each profile to identify potential protective and aggravating factors

74

[25,26]. Therefore this study aimed at evaluating the impact of a newly acquired SCI by (1)

75

identifying profiles of psychological adaptation outcomes across life satisfaction, distress,

76

depressive symptoms, and anxiety symptoms at discharge from inpatient rehabilitation and (2)

77

examining biopsychosocial factors associated with membership to the identified profiles.

78

Previous studies on adverse life events (e.g. chronic illnesses and disabilities, spousal

79

bereavement, divorce) have identified at least three patterns of adaptation outcomes: one

80

characterized by the best-identified outcomes, a second one showing poor outcomes, and a

81

third one displaying outcomes in moderate levels [25-28]. Therefore, we expected to identify

82

at least these three profiles among our study sample. Finally, based on studies analyzing the

83

relationship between different biopsychosocial factors and life satisfaction, depression, or

84

anxiety, we expected profile membership to be associated with self-efficacy, purpose in life,

85

and optimism [29-32], as well as pain and functional independence [33-35], but not with

86

other biomedical (age, sex, injury characteristics) nor social factors (partnership status).

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METHODS

4

88

Design and Participants

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A cross-sectional study was performed using rehabilitation discharge data from the ongoing

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National Cohort Study (NCS; name edited for blind review) conducted in the four major

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national rehabilitation centers [36]. NCS was approved by the regional ethics committees and

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all participants gave written informed consent. Participants were assessed during clinical

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rehabilitation at four time points after diagnosis of SCI, including rehabilitation discharge.

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The present study considered 884 eligible individuals undergoing rehabilitation between May

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2013 and April 2018. From those, 97 refused to any kind of data collection, 348 only

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consented the use of minimal data collected in the clinics (e.g. basic sociodemographic,

97

neurological, and medical information, SCI etiology, and lesion characteristics), and 69 did

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not complete questionnaires regarding psychological adaptation outcomes at rehabilitation

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discharge. The final sample was composed of 370 participants (see Figure 1).

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Measures

101

Psychological adaptation outcomes

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Life satisfaction. Participants rated their life satisfaction level in the past four weeks on a

103

scale from 0 (completely dissatisfied) to 10 (completely satisfied), using one item from the

104

International SCI Quality of Life Basic Data Set [37] which shows good convergent validity

105

[38].

106

Distress. Using the single item from the Distress Thermometer [39], participants rated on a

107

scale from 0 to 10 how much distress they were experiencing. Higher scores indicate higher

108

distress, and a value of 4 indicates clinically relevant levels of general distress [40]. This item

109

has acceptable levels of sensitivity to detect psychiatric morbidity [41].

5

110

Symptoms of anxiety and depression were assessed using the two subscales of the Hospital

111

Anxiety and Depression Scale (HADS) [42] validated among individuals with SCI [43].

112

Values between 8 and 10 of each subscale sum scores are considered mild symptoms, 11 to

113

14 moderate, and 15 to 21 severe [44,45].

114

Biopsychosocial Covariates

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Information regarding sex, age, time since injury diagnosis, etiology of the SCI (traumatic vs.

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non-traumatic), injury level (tetraplegia vs. paraplegia/intact), and injury completeness

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(complete vs. incomplete) were retrieved from the patients’ records. Additionally, the

118

following factors were included:

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Presence of pain. Using one self-reported item, participants indicated whether or not they

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experienced pain during the last week.

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Functional independence was rated by health practitioners using the validated Spinal Cord

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Independence Measure III [46,47] Total sum score ranges between 0 and 100. Higher scores

123

represent better performance or independence.

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General Self-efficacy was assessed with a modified 5-item version of the General Self-

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efficacy Scale [48] which showed satisfactory reliability in an SCI sample [49]. It assesses

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the strength of the individual’s belief in their own ability to respond to new difficult

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situations on a scale from 1 (not at all) to 4 (completely). Higher total sum scores indicate

128

higher self-efficacy.

129

Purpose in life was assessed with the Purpose in Life Test–Short Form [50], which has shown

130

strong reliability in an SCI sample [51]. It consists of four items rated on a scale from 1 to 7.

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Higher total sum scores indicate higher perceived purpose in life.

6

132

Optimism was assessed using a modified 6-item version of the Life Orientation Test-Revised

133

[52]. This validated test [53] assesses general expectancies for positive outcomes. In this

134

version, individuals rated statements regarding their current state of optimism on a scale from

135

0 (strongly disagree) to 4 (strongly agree) [54]. Higher total sum scores indicate higher

136

optimism.

137

Partnership status. Participants reported whether they had a permanent partner at the onset of

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SCI or not.

139

Data Analysis

140

All analysis were conducted using Mplus 8 and the reporting of this study is based on the

141

STROBE statement [55]. To identify the profiles of psychological adaptation outcomes,

142

exploratory LPA was conducted. LPA is a person-centered analytic technique, used to

143

identify relatively homogeneous subgroups of individuals within a larger heterogeneous

144

sample, based on their answers to observed continuous variables [56]. Several models with an

145

increasing number of profiles were tested and compared. A maximum likelihood estimator

146

with robust standard errors was used to adjust for the slight non-normal distribution of the

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outcome measures [57] (see Table 1). The means and variances of the adaptation outcomes

148

were freely estimated to account for potentially unequal variances across profiles, and all

149

models were implemented using different sets of starting values to avoid local maxima

150

solutions [58-60]. Three goodness-of-fit indices were used to select the model with the best-

151

fitting number of profiles: the Bayesian Information Criterion (BIC; lower values indicate

152

better model fit), the Lo-Mendell-Rubin likelihood ratio test, and the Bootstrapped

153

Likelihood Ratio Test (LMR and BLRT; significant p values indicate that the model is

154

preferred over a model with one less profile) [61]. Besides fit indices, the profiles’

155

interpretability and theoretical relevance, the entropy indicator (higher entropy indicates

7

156

higher classification accuracy), and the profiles’ proportion were considered (fewer profiles

157

with at least 5% of the sample were preferred over many profiles with fewer individuals)

158

[60].

159

Covariates associated with profile membership were tested using the 3-step approach

160

proposed by Vermunt [62]. This procedure performs a multinomial logistic regression after

161

identifying the best-fitting number of profiles to avoid the effects of covariate

162

misspecification and to control for individual’s misclassification rates [63,64].

163

The rate of missing data varied between 0.81% and 18.92% (see Table 1). Missing in the

164

adaptation outcomes was addressed using Full Information Maximum Likelihood, whereas

165

missing in the covariates were imputed using multiple imputation in Mplus (20 imputed

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datasets). Data were imputed at the sum score level, but the items of each scale were included

167

in the imputation model to reduce information loss [65]. Profile membership probabilities

168

were also included to account for the fact that LPA assumes the existence of unobserved

169

subpopulations [65-67]. RESULTS

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171

Sample Characteristics

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Table 1 depicts the descriptive characteristics of the study participants. Comparative analysis

173

indicate that participants had better functional independence than all non-participants, had

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longer time since injury than individuals who did not complete questionnaires at

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rehabilitation discharge, and were slightly younger and reported more often incomplete

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injuries than those who only consented the use of minimal data collected in the clinics (see

177

Table 2).

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Latent Profile Analysis

8

179

Models with two to six profiles were estimated and compared. The 4-profile model was

180

selected as the best-fitting solution because it showed the lowest BIC and significant LMR

181

and BLRT (see Table 3). Moreover, its entropy and proportion of individuals per profile were

182

satisfactory.

183

Potentially influential outliers were investigated using scatter plots of the Cook’s D against

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each psychological adaptation outcome. Two potentially influential outliers with Cook’s D

185

values higher than 1 were identified. These two outliers showed “inconsistent” patterns of

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response (e.g. high scores in life satisfaction and high scores in depressive symptoms).

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Models excluding these two outliers were implemented and indicated that the 4-profile

188

solution remained the best-fitting one. Further analyses were conducted without these

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outliers.

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Figure 2 depicts the estimated means and 95% confidence interval for the four identified

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profiles of psychological adaptation outcomes. The profiles were characterized by different

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levels of impact and labelled as: Minimal impact (32.6%), Low impact (37.3%), Mild impact

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(23%), and Severe impact (7.1%). Minimal impact displayed the lowest scores in depressive

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symptoms, anxiety symptoms, and distress as well as the highest scores in life satisfaction.

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Low impact showed high life satisfaction, depressive and anxiety symptoms below the cutoff

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scores of the HADS, and clinically relevant levels of distress according to the distress

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thermometer. Mild impact displayed mild symptomatology of depression and anxiety as well

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as high distress and low life satisfaction. Severe impact showed clinically relevant symptoms

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of depression and anxiety, the highest level of distress, and the lowest level of life

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satisfaction. Plots of the means and observed individual values for each profile are displayed

201

in Figure 3 and show fairly distinctive individual patterns of response. (Estimated means and

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95% confidence interval for each profile can also be found in supplementary Table 1. The

203

correlation between the study variables are displayed in supplementary Table 2). 9

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Covariates Associated with Profile Membership

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Table 4 presents the results of the multinomial logistic regression using profile membership

206

as dependent variable. Male individuals and higher scores in purpose in life or optimism

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increased the likelihood to be part of the Minimal impact profile compared to any other

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profile. Additionally, individuals with better functional independence had higher chances to

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display a Minimal impact profile compared to Low or Severe impact, and those with

210

paraplegia or intact injury, absence of pain, or higher self-efficacy were more likely in

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Minimal impact than in Mild impact. However, the effect of injury level was only marginally

212

significant. Age, time since injury, etiology of the SCI, injury completeness, and having a

213

partner at SCI onset were not significantly associated with profile membership.

214

Sensitivity Analysis

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To check the robustness of the results, the multinomial logistic regression analysis was

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repeated with complete cases only (n=255) instead of imputed data. Results using Minimal

217

impact as comparison group remained fairly the same, except that the effect of functional

218

independence and Self-efficacy became non-significant (when compared to Low and Mild

219

impact respectively) and the effect of tetraplegia became significant (when compared to Low

220

impact). Such minor changes in the results can be expected as the size of each profile was

221

reduced by nearly 30% due to missing data.

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In regards to the Severe impact profile, results were less robust (i.e. significant effects

223

appeared for purpose in life, age, functional independence, pain, and partnership status when

224

compared to Low and Mild impact). This profile was the smallest and had the highest

225

reduction due to missing data (n=15). Thus, results regarding the Severe impact profile

226

should be interpreted cautiously.

10

DISCUSSION

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228

As hypothesized, we identified several profiles of psychological adaptation outcomes

229

displaying different levels of impact, ranging from minimal to severe. These findings

230

coincide with studies suggesting a varying degree of adaptation outcomes among individuals

231

with chronic illnesses and disabilities [10,12,13,28,68]. Such heterogeneity is not identifiable

232

when studying overall mean scores and support that individuals can show positive responses

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across several outcome measures early after injury onset. Still, outcomes observed at

234

rehabilitation discharge may improve or decline as individuals face the new challenges of

235

reintegrating into the community. Therefore, longitudinal studies are needed to understand

236

what contributes to maintaining positive adaptation outcomes beyond the clinical setting.

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We did not identify any profile characterized by a differential impact of SCI on the

238

adaptation outcomes (e.g. high life satisfaction and elevated symptoms of depression or

239

anxiety). Although such pattern of response could be noted for some participants (see Figure

240

3), these individuals were not representative enough to form a profile. However, with a larger

241

sample, a profile with such characteristics could have emerged. Future studies analyzing

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longitudinally and simultaneously several adaptation outcome measures could reveal such

243

heterogeneity because the effects of SCI could be longer-lasting for some indicators than for

244

others [23,24].

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We identified 32.6% of the participants displaying a profile characterized by minimal

246

psychological impact of SCI at rehabilitation discharge. In fact, the Minimal Impact profile

247

showed rates of life satisfaction comparable to the National general population (M = 8.34 and

248

8.00, respectively) [69]. This type of profile characterized by the best-identified outcomes has

249

been usually labeled as Resilient and has been reported as the most prevalent in studies on

250

psychological adaptation to spousal bereavement or divorce [25,26]. Similarly, studies on the

11

251

longitudinal development of depression or anxiety following SCI have identified Resilient

252

trajectories (i.e. stable low depression) as being the most prevalent among individuals with

253

SCI [10,11,68]. In contrast, our most prevalent profile was Low impact (37.3%; significant

254

distress and lower life satisfaction than Minimal Impact). This result might be due to

255

methodological choices of previous studies using mixture modeling, which set the outcomes’

256

variances to be equal across classes. This has been criticized because it seems to cause an

257

overestimation of resilient responses after potentially traumatic events [70]. Minimal impact

258

following SCI might thus be less common than previously reported.

259

Previous studies have estimated the prevalence of clinically relevant levels of depression and

260

anxiety among individuals with SCI to be 22 and 27% respectively [9,71]. In our sample,

261

around 30% of the individuals showed elevated symptoms of either depression, anxiety, or

262

both (Mild and Severe impact profiles). These individuals would particularly benefit from

263

interventions targeting factors related to better psychological adaptation profiles following

264

SCI.

265

Covariates Associated with Profile Membership

266

As hypothesized, self-efficacy, purpose in life, and optimism were associated with more

267

positive adaptation outcomes at rehabilitation discharge (i.e. Minimal or Low impact

268

profiles). Previous studies have consistently found that self-efficacy and purpose in life

269

contributed to better mental health and well-being after SCI [29,30,32,72,73]. Optimism has

270

also been found to contribute to better psychological outcomes [29,32,68,74]. This highlights

271

the need for fostering psychological resources during the clinical rehabilitation, a setting that

272

has been described as overly focused on physical issues and less attentive to individuals’

273

emotional needs [75-77]. Indeed, reports of interventions fostering optimism or purpose in

274

life during inpatient rehabilitation are scarce. However, self-efficacy has been effectively

12

275

increased by cognitive-behavioral techniques, peer mentoring, or multimedia resources,

276

which can reduce levels of depressive mood, and anxiety, and improve medical outcomes

277

(e.g. decubitus prevention) [77-79].

278

Better functional independence and absence of pain were also associated with displaying a

279

Minimal impact profile. While some studies reported no associations between functional

280

limitations and psychological adaptation to SCI [10,80,81], others coincide with our findings

281

and identified positive effects of functioning on life satisfaction [13,34]. However,

282

individuals that experience pain have been consistently found to be at a greater risk for

283

having poor adaptation outcomes [11-13]. These results underline the negative impact of

284

pain, providing basis to argue that it should be a priority intervention target. Note that

285

absence of pain, like higher self-efficacy, was not significantly associated with membership

286

to Minimal impact compared to Severe impact profile. These surprising results might be due

287

to the higher variation and the smaller sample size of the Severe impact profile. Additionally,

288

measures such as pain intensity could have been more informative regarding profile

289

differences than the dichotomous item used in this study.

290

Unexpectedly, our results indicate that males are more likely to show a Minimal impact

291

profile than any other identified profile. Previous findings regarding sex seem contradictory;

292

whereas some indicate a higher risk of mental health disorders among women compared to

293

men [82,83], others indicate that males have a higher likelihood of depression or anxiety after

294

rehabilitation discharge [84]. Thus, further studies are needed to confirm whether or not sex

295

should be considered in the interventions to enhance psychological adaptation to SCI.

296

As hypothesized, we did not identify significant effects of age or injury-related characteristics

297

on profile membership. However, our study participants were slightly younger and reported

298

more often incomplete injuries than non-participants who only consented the use of minimal

13

299

data. This reduced the variability of our sample regarding age and lesion completeness; thus,

300

the effect of these variables might have been more difficult to identify. Still, our findings

301

coincide with past studies indicating no effect of age or injury characteristics on

302

psychological adaptation [11-13,85]. Finally, we did not find significant associations between

303

partnership status and profile membership. Former studies have also not identified

304

associations between partnership status and life satisfaction or depression [11,86,87] or

305

suggested that marriage does not necessarily enhance well-being [88]. Other factors such as

306

social support or relationship satisfaction could be more relevant to explain adaptation

307

outcomes following SCI [89,90].

308

Study Limitations

309

The present study is subject to several limitations. First, the pre-SCI level of individuals’ life

310

satisfaction, distress, depression, and anxiety was not considered. Clearly, this information is

311

not easily available, but individuals’ mental health history would contribute to discriminate

312

between psychological disturbances due to the injury and those that participants already

313

experienced before SCI. Second, psychological adaptation is a process and its outcomes may

314

change with time. Due to the cross-sectional character of our study, we do not know how the

315

psychological adaptation outcomes developed during the inpatient rehabilitation (e.g.

316

following a trajectory of resilience, recovery, or worsening), nor how they will change after

317

discharge. Thus, the longitudinal and simultaneous analysis of several adaptation outcome

318

measures during and after inpatient rehabilitation is needed since psychological adaptation

319

should be considered in its multidimensional as well as in its temporal character [3]. This

320

could be complemented with qualitative methods to broaden the understanding of the

321

development of the psychological adaptation process following the onset of an SCI.

322

Furthermore, the proportion of individuals in the Severe impact profile was small (n = 24)

14

323

and could have obscured differences regarding covariates such as pain and self-efficacy.

324

Moreover, some vulnerable individuals may have been excluded, because our sample was

325

composed of individuals that were in better physical conditions than non-participants and

326

disregarded individuals whose participation was not supported by the physicians (due to

327

physical or psychological condition; n=16). Thus, our findings may not be generalizable for

328

the most functionally impaired individuals with SCI. Finally, other factors such as spirituality

329

or appraisals, which have been associated with adaptation outcomes after SCI [10,31] were

330

not included in this study. Thus, potential predictors of profile membership may be missing.

331

CONCLUSIONS

332

Using data from a population-based cohort study and adopting a comprehensive approach to

333

the investigation of psychological adaptation outcomes following SCI, we identified that the

334

majority of individuals showed positive outcomes at the end of SCI rehabilitation, displaying

335

Minimal or Low impact profiles. However results from this study also indicate that a large

336

portion of individuals (30%) likely require tailored interventions to facilitate their

337

psychological adaptation process. Intervention planning to facilitate psychological adaptation

338

to SCI should acknowledge the complexity of this process by considering biological,

339

psychological, and social factors. Indeed, the present study identified several potentially

340

modifiable covariates which constitute avenues for interventions during rehabilitation.

341

Beyond functional independence improvement and pain management, strengthening

342

psychological factors might contribute to better adaptation outcomes and in turn facilitate the

343

return to the community for individuals with a recently acquired SCI.

15

344 345 346

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SUPPLIERS

605

606 607

a. Muthén, L.K. and Muthén, B.O. (1998-2017). Mplus Software version 8. Los Angeles, CA.

27

FIGURE LEGENDS

608

609

Figure 1. Participation flow-chart

610

611

Figure 2. Estimated mean scores and 95% confidence interval of the identified profiles

612

(N=368)

613

614

Figure 3. Profiles’ estimated mean scores and observed individual values (N=368).

615

Note: Solid lines represent profiles’ means.

28

Table 1. Descriptive characteristics of the study participants at rehabilitation discharge (N=370) Variable

Mean (SD)

Range

n (%)

Missing n (%)

α

Skewness

Kurtosis

Psychological adaptation outcomes Depressive symptoms

4.84 (3.87)

0 - 19

-

10 (2.70)

.82

0.93

3.43

Anxiety symptoms

4.87 (3.93)

0 - 19

-

3 (0.81)

.84

0.99

3.80

Life Satisfaction

6.51 (2.25)

0 - 10

-

3 (0.81)

-

-0.61

3.04

Distress

4.69 (2.61)

0 - 10

-

6 (1.62)

-

0.07

2.20

0 (0.00)

-

-

-

Covariates Sex (Male) Age

-

-

264 (68.65)

53.79 (16.54)

16 - 87

-

0 (0.00)

-

-

-

Time since injury (in days)

158.18 (83.71)

25 - 485

-

0 (0.00)

-

-

-

Length of stay in rehabilitation

137.90 (78.38)

4 - 425

-

0 (0.00)

-

-

-

SCI etiology (Traumatic)

-

-

218 (58.92)

0 (0.00)

-

-

-

Injury level (Tetraplegia)

-

-

133 (36.74)

8 (2.20)a

-

-

-

Injury level (Paraplegia)

-

-

217 (59.94)

8 (2.20)a

-

-

-

Injury level (Intact)

-

-

12 (3.31)

8 (2.20)a

-

-

-

Injury completeness (Incomplete)

-

-

306 (84.53)

8 (2.20)a

-

-

-

Pain (Presence of)

-

-

241 (65.31)

1 (0.27)

-

-

-

Functional independence

73.05 (23.33)

5 - 100

-

8 (2.16)

-

-

-

General self-efficacy

15.92 (2.68)

5 - 20

-

21 (5.68)

.84

-

-

Purpose in life

22.23 (4.18)

5 - 28

-

16 (4.32)

.85

-

-

Optimism

17.01 (4.57)

5 - 24

-

26 (7.03)

.76

-

-

70 (18.92)

-

-

-

Partner at onset of SCI (Yes)

-

-

215 (71.66)

Note. a indicates rate of missing data after completion with the latest assessment available in the medical records

Table 2. Comparison between participants and non-participants of the study Non-participants

Participants (n=370)

Minimal data only (n=348)

No discharge data (n=70)

n (%)

n (%)

t

df

x2

254 (68.65)

232 (66.67)

-

-

0.32

53.79 (16.54)

58.11 (19.65)

3.20**

716

158.18 (83.71)

160.58 (89.70)

0.37

716

SCI etiology (Traumatic)

218 (58.92)

195 (56.93)

-

Injury level (Tetraplegia)

133 (36.74)

93 (33.57)

Injury level (Paraplegia)

217 (59.94)

Variable Sex (Male) Age (M; SD) Time since injury (M; SD)

Injury level (Intact) Incomplete injury

t

df

x2

48 (68.57)

-

-

0

-

51.67 (19.11)

0.95

438

-

-

125.48 (88.63)

2.97**

438

-

-

0.61

38 (54.29)

-

-

0.52

-

-

0.99

18 (37.50)

-

-

0.11

172 (62.09)

-

-

-

28 (58.33)

-

-

-

12 (3.31)

12 (4.33)

-

-

-

2 (4.17)

-

-

-

306 (84.53)

215 (78.18)

-

-

4.23*

38 (82.61)

-

-

0.11

73.05 (23.33)

61.00 (28.55)

5.34**

552

-

1.68*

418

-

n (%)

Functional independence (M; SD) *p < .05, **p < .01.

67.36 (27.64)

Table 3. Goodness-of-fit Indices No of Profiles

BIC

LMR (p)

BLRT (p)

Entropy

n per profile

N = 370 2

6899.01

<.001

<.001

.84

200/170

3

6817.12

.186

<.001

.79

150/146/74

4

6801.20

.004

<.001

.78

133/122/85/30

5

6804.62

.045

<.001

.78

130/108/64/37/31

6

6831.66

.594

.428

.81

121/100/54/38/34/23

N = 368 (potentially influential outliers excluded) 2

6841.04

<.001

<.001

.84

201/167

3

6758.90

.118

<.001

.79

150/145/73

4

6743.62

.006

<.001

.79

133/125/86/24

5

6746.70

.030

.020

.79

128/108/71/37/24

6

6780.63

.738

1.000

.81

114/106/78/37/24/9

Note. BIC = Bayesian Information Criterion; LMR = Lo-Mendell-Rubin likelihood ratio test; BLRT = Bootstrapped likelihood ratio test. Bold indicates final selected model.

Table 4. Covariates associated with profile membership Minimal impact vs.

Low impact vs.

Low impact

Mild impact

Severe impact

Mild impact

Covariates

Estimate S.E.

Estimate S.E.

Estimate S.E.

Estimate S.E.

Sex (Male)

-1.99** 0.60

Mild impact vs.

Severe impact Estimate

Severe impact

S.E.

Estimate

S.E.

-2.13**

0.66

-2.71**

0.91

-0.15

0.45

-0.73

0.75

-0.58

0.77

Age

0.01

0.02

0.02

0.02

-0.03

0.04

0.01

0.02

-0.04

0.04

-0.05

0.04

Time since injury

0.00

0.00

0.00

0.00

-0.01

0.01

0.00

0.00

-0.01

0.01

-0.01

0.01

-0.03

0.52

-0.05

0.65

-1.90

1.28

-0.02

0.54

-1.86

1.21

-1.84

1.30

0.91

0.58

0.64

-0.17

1.95

0.20

0.50

-1.07

1.86

-1.28

1.92

-0.72

0.90

1.14

-0.93

1.45

0.30

0.81

-0.21

1.20

-0.51

1.40

0.11

0.52

0.86

-0.35

1.58

1.84*

0.82

-0.46

1.50

-2.30

1.72

-0.07

0.04

Etiology (Traumatic) Tetraplegia Complete SCI Pain

1.11
-0.42 1.95*

Functional -0.05** 0.02

-0.03

0.02

-0.09*

0.05

0.02


0.01

-0.04

0.04

Self-efficacy

-0.09

-0.34*

0.15

-0.05

0.19

-0.25**

0.10

0.04

0.15

Purpose in life

-0.29** 0.09

-0.37**

0.10

-0.66**

0.25

-0.07

0.07

-0.37

0.23

-0.30

0.23

Optimism

-0.22** 0.08

-0.51**

0.11

-0.75**

0.17

-0.29**

0.08

-0.53**

0.16

-0.24


0.13

independence 0.14

0.29*

0.15

Partner (Yes)

-0.72

0.70

-0.80

0.75

0.88

1.60

-0.08

0.54

1.60

1.51

1.68

1.55

Note. N = 359: 9 cases where not included in the multinomial logistic regression, because data regarding injury level and completeness could not be recovered from previous assessment times. Minimal impact n=125; Low impact n=133; Mild impact n=86; Severe impact n=24.


p < .10, *p < .05, **p < .01

NCS (name edited for blind review) inclusion criteria: • 16 years or older • Permanent residence in Country (name edited for blind review) • New diagnosis of traumatic or non-traumatic SCI • First inpatient rehabilitation in one of the collaborating rehabilitation centers Exclusion criteria: • Congenital conditions (e.g. spina bifida) • New SCI in the context of palliative (end-of-life) care • Neurodegenerative disorders (e.g. multiple sclerosis)

884 eligible individuals between May 2013 and April 2018 444 did not consent to answer NCS questionnaires • 97 Refused to any kind of data collection • 74 did not want to take part in the study • 7 No data due to organizational reasons • 16 Participation was not supported by the responsible physician (medical or psychological reasons) • 348 Minimal data only: only consented the use of routine data collected in the clinics (e.g., basic sociodemographic, neurological, and medical information, SCI etiology, and lesion characteristics) 440 consented to answer questionnaires 69 No discharge data: did not complete questionnaires at rehabilitation discharge • 19 Questionnaire refusal • 20 Short stay or sudden discharge • 8 Consent withdrawal • 7 Medical reasons • 3 Death • 3 Insufficient language skills • 9 Other reasons 371 answered to questionnaires at rehabilitation discharge 1 Answered to only one psychological adaptation outcome 370 Study participants

16 15 14 13 12

Depressive symptoms Anxiety symptoms Distress Life satisfaction

11

Mean scores

10 9 8 7

6 5 4 3 2 1 0

Minimal impact (32.6%)

Low impact (37.3%)

Mild impact (23%)

Severe impact (7.1%)

Low impact

20

20

15

15

10

●

●

●

●

Score

Score

Minimal impact

10

●

●

●

●

●

●

●

● ●

●

●

●

●

●

●

●

●

●

●

● ●

5

●

●

5

●

●

●

●

●

●

● ●

●

●

●

●

●

●

●

●

● ●

●

●

●

●

●

●

●

●

●

●

●

●

●

●

●

●

●

●

Depressive symptoms

Anxiety symptoms

Distress

Life satisfaction

●

●

●

●

●

●

●

●

●

Depressive symptoms

Anxiety symptoms

Distress

● ●

● ●

●

0

●

0 Life satisfaction

Outcome

Outcome

Mild impact

Severe impact

20

20 ●

●

●

10

●

●

●

●

●

●

●

●

●

●

●

●

●

●

●

●

●

●

●

●

●

●

●

●

●

●

●

●

●

●

●

5

15

●

Score

Score

15

●

10

●

●

●

●

●

●

●

●

●

●

●

●

●

●

●

●

●

●

●

●

● ●

●

●

●

●

●

●

●

●

●

●

●

5 ●

●

●

● ●

●

●

●

●

0 Depressive symptoms

●

0

●

Anxiety symptoms

Distress Outcome

Life satisfaction

Depressive symptoms

●

Anxiety symptoms

Distress Outcome

Life satisfaction