The social dimension of quality of life following spinal cord injury or disease: an international ICF-linking study.

STUDY DESIGN: International Classification of Functioning, Disability and Health (ICF) linking study. OBJECTIVE: Analyze cognitive interview data using the ICF as an analytic framework, to examine aspects of social life relevant to quality of life (QoL) according to people with spinal cord injury or disease (SCI/D). This study builds upon results of an international study about the cross-cultural validity of the International SCI QoL Basic Data Set (QoL-BDS). SETTING: Four specialized outpatient clinics in SCI/D rehabilitation, from the US, Brazil and Australia. METHODS: Analysis of qualitative data from 39 cognitive interviews with SCI/D patients at least one year post onset. Participants were asked to define their concept of QoL, overall life satisfaction, physical health and psychological health, and other relevant matters. Four independent researchers coded text fragments related to the items, and fragments were linked to ICF chapters d6-d9, following established linking rules. RESULTS: The proportion of text referring to social life was 35.8% (definition QoL), 24.9% (QoL life as whole), 6.0% (physical health) and 34.9% (psychological health). The most frequent ICF categories were d760 Family relationships, d770 Intimate relationships and d920 Recreation and leisure. Most frequent responded social topics to the 'other issues' item were d770 Intimate relationships, d760 Formal relationships, and d870 Economic self-sufficiency. CONCLUSION: The importance of social life aspects to the QoL was highlighted based on responses of SCI/D patients, clearly demonstrated through the ICF linking process. Adding a satisfaction with social life item to the QoL-BDS has made this instrument a more comprehensive measure.

International spinal cord injury socio-demographic basic data set (version 1.0).

STUDY DESIGN: Consensus based on the literature. OBJECTIVE: Create an International Spinal Cord Injury (SCI) Socio-Demographic Basic Data Set (Version 1.0). SETTING: International. METHODS: The development included an iterative process where the authors reviewed existing variables containing socio-demographic variables and created a first dataset draft, which was followed by several revisions through email communications. In addition, the work was conducted in parallel with a similar endeavour within the National Institute of Neurological Disorders and Stroke SCI Common Data Elements project in the United States. Subsequently, harmonization between the two projects was sought. Following this, a review process was initiated, including The International SCI Data Sets Committee, the American Spinal Injury Association (ASIA) Board, and the International Spinal Cord Society (ISCoS) Scientific and Executive Committees, and then by publishing on the respective websites for membership feedback. The draft was sent to about 40 national and international organizations and several interested individuals for feedback. All review comments were discussed in the working group and responded to before the final draft was developed, and finally approved by ASIA Board and the ISCoS Scientific and Executive committees. RESULTS: The final International SCI Socio-Demographic Basic Data Set includes the following variables: Date of data collection, Marital status, Household member count, Years of formal education, and Primary occupation. CONCLUSION: The International SCI Socio-Demographic Basic Data Set will facilitate uniform data collection and reporting of socio-demographic information at the time of injury as well as at post-injury follow-ups to facilitate the evaluation and comparisons across studies.

International Spinal Cord Injury Core Data Set (version 3.0)-including standardization of reporting.

STUDY DESIGN: Expert opinion, feedback, revisions and final consensus. OBJECTIVES: To update the International Spinal Cord Injury (SCI) Core Data Set while still retaining recommended standardization of data reporting. SETTING: International. METHODS: Comments on the data elements received from the SCI community were discussed in the International Core Data Set working group. The suggestions from this group were iteratively reviewed. The final version was circulated for final approval. RESULTS: The International SCI Core Data Set (Version 3.0) consists of 21 variables. The variable 'Gender' has been changed to 'Sex assigned at birth'; for the variable 'Spinal Cord Injury Etiology', the item, 'Sports or exercise during leisure time', has been clarified as 'including during leisure time'; for the variables 'Vertebral injury' and 'Associated injuries', the item 'Unknown' is reworded into: 'Not applicable (non-traumatic case)' and 'Unknown'; the variable 'Spinal surgery' has been expanded to include surgeries for individuals with non-traumatic SCI; for the variables related to the International Standards for Neurological Classification of SCI only the neurological level of injury (NLI) and the American Spinal Injury Association (ASIA) Impairment Scale (AIS) are to be reported, and a separate variable is included indicating if the NLI or the AIS or both are impacted by a non-SCI condition. CONCLUSION: The International SCI Core Data Set (Version 3.0) should be collected and reported for all studies of SCI to facilitate uniform descriptions of SCI populations and facilitate comparison of results collected worldwide.

Using Clinical Vignettes and a Modified Expert Delphi Panel to Determine Parameters for Identifying Non-Traumatic Spinal Cord Injury in Health Administrative and Electronic Medical Record Databases.

OBJECTIVE: To obtain expert consensus on the parameters and etiologic conditions required to retrospectively identify cases of non-traumatic spinal cord injury (NTSCI) in health administrative and electronic medical record (EMR) databases based on the rating of clinical vignettes. DESIGN: A modified Delphi process included 2 survey rounds and 1 remote consensus panel. The surveys required the rating of clinical vignettes, developed after chart reviews and expert consultation. Experts who participated in survey rounds were invited to participate in the Delphi Consensus Panel. SETTING: An international collaboration using an online meeting platform. PARTICIPANTS: Thirty-one expert physicians and/or clinical researchers in the field of spinal cord injury (SCI). MAIN OUTCOME MEASURE(S): Agreement on clinical vignettes as NTSCI. Parameters to classify cases of NTSCI in health administrative and EMR databases. RESULTS: In health administrative and EMR databases, cauda equina syndromes should be considered SCI and classified as a NTSCI or TSCI based on the mechanism of injury. A traumatic event needs to be listed for injury to be considered TSCI. To be classified as NTSCI, neurologic sufficient impairments (motor, sensory, bowel, and bladder) are required, in addition to an etiology. It is possible to have both a NTSCI and a TSCI, as well as a recovered NTSCI. If information is unavailable or missing in health administrative and EMR databases, the case may be listed as "unclassifiable" depending on the purpose of the research study. CONCLUSION: The Delphi panel provided guidelines to appropriately classify cases of NTSCI in health administrative and EMR databases.

Rasch Analysis of the International Quality of Life Basic Data Set Version 2.0.

OBJECTIVE: To examine the internal construct validity of the International Spinal Cord Injury Quality of Life Basic Data Set Version 2.0 (QoL-BDS V2.0) and compare this with the internal construct validity of the original version of the QoL-BDS. DESIGN: International cross-sectional psychometric study. SETTING: Spinal rehabilitation units, clinics, and community. PARTICIPANTS: The study involved 5 sites and 4 countries, 2 of whose primary language is not English. Each site included a consecutive sample of inpatients with spinal cord injury or disease (SCI/D) and a convenience sample of individuals with SCI/D living in the community (N=565). MAIN OUTCOME MEASURES: The QoL-BDS V2.0 consists of the 3 original items on satisfaction with life as a whole, physical health, psychological health of the QoL-BDS, and an additional item on satisfaction with social life. All 4 items are answered on a 0-10 numeric rating scale. Rasch analysis was performed on versions 1.0 and 2.0 of the QoL-BDS to examine the ordering of the items' response options, item scaling, reliability, item fit, local item independence, differential item functioning, and unidimensionality. RESULTS: The sample included 565 participants with 57% outpatients and 43% inpatients. Mean age was 51.4 years; 71% were male; 65% had a traumatic injury, 40% had tetraplegia, and 67% were wheelchair users. Item thresholds were collapsed for ordering, and subsequent analyses showed good internal construct validity for the QoL-BDS V2.0 with a person separation reliability of 0.76 and Cronbach α of 0.81. Infit and outfit statistics ranged 0.62-0.91. No local dependencies and multidimensionality were found. Differential item functioning was observed only for country and inpatients vs outpatients but not for other participants' characteristics. Differences in internal construct validity between the 3-item and 4-item versions were minimal. CONCLUSIONS: The results of this Rasch analysis support the internal construct validity of the QoL-BDS V2.0.

Pediatric spinal cord injury rehabilitation: A protocol for an international multicenter project (SINpedSCI).

PURPOSE: Children and adolescents (<18 years old) who sustain a spinal cord injury (SCI) should ideally be managed in specialized rehabilitation services. This project aims to describe the organization of pediatric SCI in ten rehabilitation units in seven countries and to qualitatively explore psychosocial aspects of adolescents living with SCI. METHODS: A multicenter cross-sectional project is planned, using quantitative (web survey) and qualitative (interview) methods in ten rehabilitation units from Norway, Sweden, United States, Israel, PR China, Russia and Palestine. Individual interviews will be conducted with ≥20 adolescents aged 13-17 years at least 6 months' post rehabilitation. RESULTS: Units involved will be described and compared, according to funding, attachment to an acute SCI unit, catchment area, number of beds, admittance and discharge procedures, availability of services, staff/patient ratio, content and intensity of rehabilitation programs, length of stay, measurement methods, follow-up services, health promotion services, and pediatric SCI prevention acts. The semi-structured interview guide will include experiences from acute care and primary rehabilitation, daily life, school, contact with friends, leisure time activities, peers, physical and psychological health, and the adolescents' plans for the future. CONCLUSION: Based on the present protocol, this project is likely to provide new insight and knowledge on pediatric SCI rehabilitation and increase the understanding of pediatric SCI in adolescents and their families internationally.

A cross-cultural mixed methods validation study of the spinal cord injury quality of life basic dataset (SCI QoL-BDS).

STUDY DESIGN: Mixed methods inquiry using cognitive interviews and thematic content analysis. OBJECTIVES: Cross-validation of the concept of quality of life (QoL) and of the International Spinal Cord Injury Quality of Life Basic DataSet (SCI QoL-BDS) items across five sites in four countries: United States, Australia, Brazil, and the Netherlands. Analysis aimed to uncover patterns, differences, and similarities suggesting conceptual equivalence for overall QoL and the three SCI QoL-BDS items. SETTING: International, community. METHODS: Semi-structured cognitive interviews with 51 participants across five sites and four countries. Participants with spinal cord injury/disease (SCI/D) completed the SCI QoL-BDS items and one additional question. Interviews were audio recorded and transcribed. Transcripts were coded using NVivo software. Coded data were analyzed using thematic content analysis. Seventeen themes were identified. Responses by sites were compared for conceptual equivalence. RESULTS: Across the five sites, equivalence in the conceptual meaning of QoL was found based on the frequent commonalities in terminology employed to describe it. Despite sample differences in terms of demographic and SCI characteristics, participants across all sites replied to the SCI QoL-BDS items in a similar way, suggesting good item equivalence. Qualitatively, the differences noted with respect to the use of themes for each question suggest some variability on how participants with SCI/D describe QoL. In spite of these contextual differences, there is a high degree of commonalty not explained by participants' demographic or injury/disease characteristics. CONCLUSIONS: The SCI QoL-BDS shows good cross-cultural validity among the international sites included in this study.

A longitudinal examination of the frequency and correlates of self-reported neurobehavioural disability following stroke.

PURPOSE: To determine the frequency, impact, and factors associated with self-reported neurobehavioural disability (NBD) in individuals with stroke. A secondary aim was to examine the course of self-reported NBD over time and associations with outcomes. METHODS: Eighty-seven participants admitted for inpatient rehabilitation post-stroke completed the St Andrew's-Swansea Neurobehavioural Outcome Scale. Demographic and stroke details and measures of functional disability, cognitive impairment, mood, and self-rated impact of NBD symptoms were completed. Twenty-seven participants and 19 close-others were reassessed three to six months following discharge. RESULTS: Overall reporting of neurobehavioural problems was infrequent. The domains of interpersonal and cognitive difficulties were the most commonly identified but were still only reported occasionally. However, even mild NBD was significantly correlated with negative impact. Greater self-reported NBD was significantly correlated with greater functional dependence, anxiety, and depression during inpatient rehabilitation. Self-reports of NBD remained stable over time and, at follow-up, was significantly correlated with depressive symptoms both in participants with stroke and close-others. CONCLUSIONS: In survivors of stroke, self-report of NBD is associated with poor outcomes in function, anxiety, and depression. These findings highlight the importance of routine and comprehensive assessment and intervention to manage NBD following stroke.IMPLICATIONS FOR REHABILITATIONDespite relatively infrequent self-reporting, presence of NBD remained stable across a six month follow-up period following rehabilitation which highlights the potential persistent nature of these difficulties.Even mild levels of self-reported NBD were associated with emotional distress in both stroke survivors and their significant others indicating a need for relevant interventions to support long-term outcomes.Routine screening for the presence of NBD is recommended to facilitate early detection and intervention to optimise post-stroke recovery.

Organisation of services and systems of care in paediatric spinal cord injury rehabilitation in seven countries: a survey with a descriptive cross-sectional design.

STUDY DESIGN: International multicentre cross-sectional study. OBJECTIVES: To describe the organisation and systems of paediatric spinal cord injury (SCI) rehabilitation services in seven countries and compare them with available recommendations and key features of paediatric SCI. SETTING: Ten SCI rehabilitation units in seven countries admitting children and adolescents with SCI < 18 years of age. METHODS: An online survey reporting data from 2017. Descriptive and qualitative analysis were used to describe the data. RESULTS: The units reported large variations in catchment area, paediatric population and referrals, but similar challenges in discharge policy. Nine of the units were publicly funded. Three units had a paediatric SCI unit. The most frequent causes of traumatic injury were motor vehicle accidents, falls, and sports accidents. Unlike the other units, the Chinese units reported acrobatic dancing as a major cause. Mean length of stay in primary rehabilitation ranged between 18 and 203 days. Seven units offered life-long follow-up. There was a notable variation in staffing between the units; some of the teams were not optimal regarding the interdisciplinary and multiprofessional nature of the field. Eight units followed acknowledged standards and recommendations for specialised paediatric SCI rehabilitation and focused on family-centred care and rehabilitation as a dynamic process adapting to the child and the family. CONCLUSIONS: As anticipated, we found differences in the organisation and administration of rehabilitation services for paediatric SCI in the ten rehabilitation units in seven countries. This might indicate a need for internationally approved, evidence-based guidelines for specialised paediatric SCI rehabilitation.

Correction: International spinal cord injury male sexual function and female sexual and reproductive function basic data sets-version 2.0.

An amendment to this paper has been published and can be accessed via a link at the top of the paper.

Correction: Validation of a clinical prediction rule for ambulation outcome after non-traumatic spinal cord injury.

An amendment to this paper has been published and can be accessed via a link at the top of the paper.

Intermittent catheterization with single- or multiple-reuse catheters: clinical study on safety and impact on quality of life.

PURPOSE: Intermittent catheterization (IC) is a proven effective long-term bladder management strategy for individuals who have lower urinary tract dysfunction. This study provides clinical evidence about multiple-reuse versus single-use catheterization techniques and if catheter choice can have an impact on health-related quality of life (HRQoL). METHOD: A prospective, multi-center, clinical trial studied patients who currently practiced catheter reuse, and who agreed to prospectively evaluate single-use hydrophilic-coated (HC) (i.e. LoFric) catheters for 4 weeks. A validated Intermittent Self-Catheterization Questionnaire (ISC-Q) was used to obtain HRQoL. Reused catheters were collected and studied with regard to microbial and debris contamination. RESULTS: The study included 39 patients who had practiced IC for a mean of 10 years, 6 times daily. At inclusion, all patients reused catheters for a mean of 21 days (SD = 48) per catheter. 36 patients completed the prospective test period and the mean ISC-Q score increased from 58.0 (SD = 22.6) to 67.2 (SD = 17.7) when patients switched to the single-use HC catheters (p = 0.0101). At the end of the study, 83% (95% CI [67-94%]) preferred to continue using single-use HC catheters. All collected reused catheters (100%) were contaminated by debris and 74% (95% CI [58-87%]) were contaminated by microorganisms, some with biofilm. CONCLUSION: Single-use HC catheters improved HRQoL and were preferred over catheter reuse among people practicing IC. Catheter multiple-reuse may pose a potential safety concern due to colonization by microorganisms as well as having reduced acceptance compared to single use. TRIAL REGISTRY NUMBER: ClinicalTrials.gov NCT02129738.

International Comparison of Vocational Rehabilitation for Persons With Spinal Cord Injury: Systems, Practices, and Barriers.

Background: Employment rates among people with spinal cord injury or spinal cord disease (SCI/D) show considerable variation across countries. One factor to explain this variation is differences in vocational rehabilitation (VR) systems. International comparative studies on VR however are nonexistent. Objectives: To describe and compare VR systems and practices and barriers for return to work in the rehabilitation of persons with SCI/D in multiple countries. Methods: A survey including clinical case examples was developed and completed by medical and VR experts from SCI/D rehabilitation centers in seven countries between April and August 2017. Results: Location (rehabilitation center vs community), timing (around admission, toward discharge, or after discharge from clinical rehabilitation), and funding (eg, insurance, rehabilitation center, employer, or community) of VR practices differ. Social security services vary greatly. The age and preinjury occupation of the patient influences the content of VR in some countries. Barriers encountered during VR were similar. No participant mentioned lack of interest in VR among team members as a barrier, but all mentioned lack of education of the team on VR as a barrier. Other frequently mentioned barriers were fatigue of the patient (86%), lack of confidence of the patient in his/her ability to work (86%), a gap in the team's knowledge of business/legal aspects (86%), and inadequate transportation/accessibility (86%). Conclusion: VR systems and practices, but not barriers, differ among centers. The variability in VR systems and social security services should be considered when comparing VR study results.

Agreement between patients and nurses of neurobehavioral disability following stroke in an inpatient rehabilitation setting.

Purpose: To investigate the level of agreement of neurobehavioral disability following stroke.Methods: Stroke patients and nurses were recruited from an inpatient neurorehabilitation facility. In total, 58 stroke patient-nurse pairs completed the St Andrew's-Swansea Neurobehavioral Outcome Scale questionnaire.Results: Agreement levels of neurobehavioral disability varied across five behavior subdomains. Cognition and Interpersonal behaviors were reported as more prevalent according to nurses (39% and 36%) versus patients (14% and 7%). Agreement levels between the two groups was fair for these domains (ICC <0.60). Percentage category agreement methods revealed high patient-nurse agreement for Communication, Inhibition, and Aggression behaviors but overall reporting of these problems was very low or absent. Patient demographics and stroke variables did not predict the pattern of results. Lower patient-nurse agreement was moderately associated with older age (rs = 0.37, p = 0.01) and increased experience of nurse (rs = 0.38, p = 0.01) but only for the Cognition-related domain. Agreement of impact of neurobehavioral disability was none to slight for both groups across all neurobehavioral domains (κ <0.20).Conclusions: Neurobehavioral disability is common in the early recovery phase after stroke and is viewed differently with regards to frequency, type, and impact between patients and their nurses. Research and clinical training in the management of stroke-related neurobehavioral disability is required.Implications for rehabilitationNeurobehavioral disability (NBD) following stroke is commonly seen in the early stages of recovery and requires careful evaluation by stroke survivors and rehabilitation staff.Many patients may disagree with their clinician that they are exhibiting NBD, which may compromise the therapeutic relationship.We need to better understand factors underlying lower reporting of NBD by patients (denial or reduced self-awareness) to help guide management in stroke rehabilitation settings.

Sexual abuse in people with spinal cord damage.

Objectives: There are few studies of sexual abuse in people with spinal cord damage (SCD). Objective of this study was to determine the prevalence and impact of sexual abuse in SCD. Design: Survey (web and paper-based). Setting: Australia (August 2013-June 2014). Participants: People with SCD (n = 136); able-bodied controls (n = 220). Interventions: None. Outcome measures: Spinal Cord Injury Secondary Conditions Scale, International SCI Quality of Life Basic Dataset, and the Physical Disability Sexual and Body Esteem scale. Questions regarding demographic and clinical characteristics, sex, sexual orientation, relationship status, disability, sexual interest and satisfaction, and sexual abuse. Results: Most SCD participants were male (n = 92, 67%), the average age was 46 years (SD = 14) and they were median of 11 years (IQR 4-21) after SCD. Of these, 19% (n = 26) reported sexual abuse. Females were much more likely to report being abused (odds ratio 3.3, 95%CI 1.5-7.4; χ2=10.9, P = 0.001). Participants reporting sexual abuse were younger (P = 0.01) and more likely to have been abused before their SCD (69%). There was no significant difference between those with SCD who reported sexual abuse and those who did not regarding their quality of life as a whole (P > 0.1). There was no difference regarding the reporting of sexual abuse between able-bodied and those with SCD (P = 0.1). Conclusion: Sexual abuse was relatively common and was not associated with an adverse relationship with the covariates assessed. Further research is needed to better determine the prevalence of sexual abuse in people with SCD and its impact.

Validation of a clinical prediction rule for ambulation outcome after non-traumatic spinal cord injury.

STUDY DESIGN: Prospective cohort study. OBJECTIVES: To validate a Clinical Prediction Rule (CPR) for ambulation in a non-traumatic spinal cord injury population (NTSCI). SETTING: Tertiary spinal rehabilitation inpatient service, Melbourne, Australia. METHODS: Adults with confirmed NTSCI were recruited between April 2013 and July 2017. Data based on the original van Middendorp CPR (age and four neurological variables) were collected from participant's medical records and by interview. The Spinal Cord Independence Measure item 12 was used to quantify the ability to walk at 6 and 12 months. A receiver operator curve (ROC) was utilised to determine the performance of the CPR. Ambulatory outcomes were compared for AIS A, B, C and D and aetiology groups. RESULTS: The area under the ROC curve (AUC) was 0.94 with 95% confidence interval (CI) 0.86-1.0 (n = 52). Overall accuracy was 75% at 6 months and 82% at 12 months. For the whole cohort the sensitivity at 12 months was 95% and specificity 73%. However, specificity for AIS C and D was only 50%. CONCLUSION: The CPR correctly predicted those who did not walk at 6 and 12 months following NTSCI, but was less accurate in predicting those who would walk particularly those with an AIS C or D classification. This CPR may be useful to inform planning for future care in individuals with NTSCI, particularly for those who are not expected to walk. Further research with larger sample sizes is required to determine if the trends identified in this study are generalisable.

Satisfaction with life, health and well-being: comparison between non-traumatic spinal cord dysfunction, traumatic spinal cord injury and Australian norms.

Study design: Cross-sectional survey. Objectives: The objective of this study is to compare self-reported satisfaction with life, and self-reported health and well-being of people with NTSCD, to that of people with TSCI, and with Australian population. Setting: Victoria, Australia. Methods: Participants completed surveys by post or email. The Satisfaction with Life Scale (SWLS) and the Medical Outcomes Study 36-Item Short Form Health Survey (SF-36) were used to assess self-reported satisfaction with life, and health and well-being. Descriptive statistics are reported including median and interquartile range (IQR). The Mann-Whitney U-test was used to investigate differences between groups. Results: There were 41 participants: NTSCD (n = 14) and TSCI (n = 27). There were no significant differences in the median scores on the SWLS for NTSCD and TSCI, but both groups scored lower than the Australian non-disabled sample mean. There were significant differences between NTSCD and TSCI for SF-36 domains physical functioning, role limitations physical and vitality (p < 0.05). Median scores for both groups in all eight domains were lower than the means of the comparative Australian sample, except for role limitations emotional. Conclusions: There were more apparent difficulties for people with NTSCD in completing desired functional tasks than those with TSCI. Both groups had lower self-reported satisfaction with life, and lower reported health and well-being in comparison to samples of non-disabled Australians.

Utilizing three dimensional clinical gait analysis to optimize mobility outcomes in incomplete spinal cord damage.

BACKGROUND: Three-dimensional gait analysis (3DGA) has not previously been considered by consensus panels of spinal cord experts for use in studies of patients with spinal cord damage (SCD), yet it is frequently used in other neurological populations, such as stroke and cerebral palsy. RESEARCH QUESTION: How does 3DGA impairment based reporting guide individualised clinical decision-making in people with incomplete SCD? METHODS: Retrospective open cohort case series recruited 48 adults with incomplete SCD (traumatic or non-traumatic spinal cord dysfunction) referred to the Clinical Gait Analysis Service (CGAS), Melbourne, Australia. Three-dimensional gait data were used to identify gait impairments by the multidisciplinary clinical team. Gait patterns were classified using the plantarflexor-knee extension couple index and the Gait Profile Score (GPS). The reason for referral and the recommendations made post-3DGA were collated in decision trees to extrapolate the potential value of 3DGA in decision making for targeted intervention in this population. RESULTS: Participants with SCD generally walked at a reduced gait speed. When grouped by neurological level, the tetraplegia group had a significantly lower GPS, but no specific gait patterns emerged. Participants were primarily referred to the CGAS to direct clinical intervention decisions. The most frequent recommendation following 3DGA was the prescription of an ankle foot orthosis and in some cases, the recommendation was incongruent with the referrer's proposed intervention. SIGNIFICANCE: 3DGA can provide specific guidance in management plans for gait of patients with incomplete SCD and may help to avoid inappropriate or unnecessary interventions. This sample of patients referred to the CGAS demonstrates its clinical utility in guiding clinicians in their decision making to target individualised intervention.

Reproducibility of the international spinal cord injury quality of life basic data set: an international psychometric study.

STUDY DESIGN: Psychometric study. OBJECTIVES: To examine the reproducibility of the international spinal cord injury quality of life basic data set (QoL-BDS) in an international sample of community-dwelling adults with spinal cord injury or disease (SCI/SCD) and in subgroups with respect to age (< 50 vs. ≥ 50 years) and etiology. SETTING: Outpatient rehabilitation clinics and community. METHODS: Participants were people living with SCI/D in four countries, at least 1 year post onset and at least 18 years of age. The QoL-BDS consists of three items on satisfaction with life as a whole, physical health and psychological health rated on a 0-10 numerical rating scale. A fourth item on satisfaction with social life was included based on feedback from participants. RESULTS: A total of 79 people were included. Median age was 52 years. Most participants (69.6%) had SCI, paraplegia (53%), and 40.5% reported a motor complete injury. Median time between tests was 14 days (range 4-27). Intra-class correlation (ICC) values of the items ranged from 0.66 to 0.80. ICC values of the three-item and four-item total scores were identical and good (0.83; 95% CI 0.75-0.89). Subgroup analyses showed ICC values ranging from 0.76 to 0.83. Bland-Altman plots suggested no bias for the three-item total score, but some bias for the four-item total score. The limits of agreement of both scores were similar, wide at individual level and small at group level. CONCLUSIONS: This study provides evidence of reproducibility of the current version of the QoL-BDS. When adding a fourth item, reproducibility was maintained.

A therapeutic songwriting intervention to promote reconstruction of self-concept and enhance well-being following brain or spinal cord injury: pilot randomized controlled trial.

OBJECTIVE: To determine the size of the effects and feasibility (recruitment and retention rates) of a therapeutic songwriting protocol for in-patients and community-dwelling people with acquired brain injury or spinal cord injury. DESIGN: Randomized controlled trial with songwriting intervention and care-as-usual control groups, in a mixed measures design assessed at three time points. PARTICIPANTS: A total of 47 participants (3 in-patients with acquired brain injury, 20 community participants with acquired brain injury, 12 in-patients with spinal cord injury, and 12 community participants with spinal cord injury: 23 1208 days post injury). INTERVENTIONS: The intervention group received a 12-session identity-targeted songwriting programme, where participants created three songs reflecting on perceptions of past, present, and future self. Control participants received care as usual. MEASURES: Baseline, postintervention, and follow-up measures comprised the Head Injury Semantic Differential Scale (primary outcome measure), Patient Health Questionnaire-9, Emotion Regulation Questionnaire, and Satisfaction with Life Scale. RESULTS: No significant between group pre-post intervention differences were found on the primary self-concept measure, the Head Injury Semantic Differential Scale ( p = 0.38, d = 0.44). Significant and large effect sizes from baseline to post between groups in favour of the songwriting group for Satisfaction with Life ( p = 0.04, n2 p = 0.14). There were no significant between group pre-post interaction effects for the Emotion Regulation Suppression subscale ( p = 0.12, n2 p = -0.08) although scores decreased in the songwriting group over time while increasing for the standard care group. There were no significant differences in baseline to follow-up between groups in any other outcome measures. Recruitment was challenging due to the small number of people eligible to participate combined with poor uptake by eligible participants, particularly the in-patient group. Retention rates were higher for the community-dwelling cohorts. CONCLUSION: This study demonstrates the challenges in recruitment and retention of participants invited to participate in a music therapy study. Findings suggest this identity-focused therapeutic songwriting protocols may be more beneficial for people who have transitioned from in-patient to community-contexts given the greater proportion of participants who consent and complete the intervention. Preliminary effects in favour of the intervention group were detected in a range of well-being measures suggesting that a larger study is warranted.