Investigation of health literacy level and its effect on quality of life in patients with spinal cord injury

Objectives:To determine the health literacy (HL) level in patients with traumatic spinal cord injury (SCI) and evaluate the relationship between HL and the quality of life (QoL).Study Design:Cross-sectional study.Setting:Ankara Physical Medicine and Rehabilitation Education and Research Hospital, Turkey.Participants:A total of 77 patients with traumatic SCI aged 15–65 years where the trauma had occurred at least a month ago before data collection and who were attending the rehabilitation program at the hospital as inpatients we included in the study.Outcome Measures:The European Health Literacy Questionnaire Turkish Adaptation (HLS-TR) was used for the evaluation of the HL level, and the Short Form-36 was used for the evaluation of the QoL.Results:The HL level was inadequate in 32.5%, problematic-limited in 40.3%, sufficient in 19.5%, and excellent in 7.8% of the patients. The vitality and mental health subdimensions of the QoL were found to be statistically significantly better in participants with excellent, sufficient or problematic-limited HL compared to those with an inadequate level.Conclusions:According to our results, the HL level of the majority of patients with SCI who are hospitalized in our hospital is low, and there is a relationship between HL and QoL. In conclusion, steps need to be taken to increase the HL levels of patients to improve their QoL, taking into account the important effect of HL on the QoL.     

Global and domain-specific life satisfaction among older adults with long-term spinal cord injury

ObjectiveAlthough life expectancy after spinal cord injury (SCI) has increased, knowledge of life satisfaction and associated factors among older adults with long-term SCI is still very limited. The objective of this study was, therefore, to assess global and domain-specific life satisfaction among older adults with long-term SCI and investigate the association with sociodemographics, injury characteristics and secondary health conditions.DesignCross-sectional cohort study. Data from the Swedish Aging with Spinal Cord Injury Study (SASCIS).SettingCommunity settings in southern Sweden.ParticipantsSeventy-eight individuals (32% women, injury levels C1-L3, American Spinal Injury Association Impairment Scale (AIS) A-D) mean age 68 years, mean time since injury 31 years.InterventionsNot applicable.Outcome measuresThe Life Satisfaction Questionnaire (LiSat-11).ResultsThe participants were at least rather satisfied with most of the 11 life domains. They rated the lowest satisfaction with sexual life, activities of daily living and somatic health. Having a partner and being vocationally active was associated with greater satisfaction with life as a whole and with several other life domains. Participants with AIS D injuries were less satisfied with their somatic health than those with tetraplegia AIS A-C and paraplegia AIS A-C injuries. More secondary health conditions were negatively associated with satisfaction in five life domains.ConclusionLife satisfaction can be affected many years after SCI. The social context, participation in meaningful activities and minimizing secondary health conditions seem to be important for maintaining life satisfaction in older adults with a long-term injury.     

Relationship of patient characteristics and rehabilitation services to outcomes following spinal cord injury: The SCIRehab Project

Background/objective

To examine associations of patient characteristics along with treatment quantity delivered by seven clinical disciplines during inpatient spinal cord injury (SCI) rehabilitation with outcomes at rehabilitation discharge and 1-year post-injury.

Methods

Six inpatient SCI rehabilitation centers enrolled 1376 patients during the 5-year SCIRehab study. Clinicians delivering standard care documented details of treatment. Outcome data were derived from SCI Model Systems Form I and II and a project-specific interview conducted at approximately 1-year post-injury. Regression modeling was used to predict outcomes; models were cross-validated by examining relative shrinkage of the original model R² using 75% of the dataset to the R² for the same outcome using a validation subsample.

Results

Patient characteristics are strong predictors of outcome; treatment duration adds slightly more predictive power. More time in physical therapy was associated positively with motor Functional Independence Measure at discharge and the 1-year anniversary, CHART Physical Independence, Social Integration, and Mobility dimensions, and smaller likelihood of rehospitalization after discharge and reporting of pressure ulcer at the interview. More time in therapeutic recreation also had multiple similar positive associations. Time spent in other disciplines had fewer and mixed relationships. Seven models validated well, two validated moderately well, and four validated poorly.

Conclusion

Patient characteristics explain a large proportion of variation in multiple outcomes after inpatient rehabilitation. The total amount of treatment received during rehabilitation from each of seven disciplines explains little additional variance. Reasons for this and the phenomenon that sometimes more hours of service predict poorer outcome, need additional study.

Note

This is the first of nine articles in the SCIRehab series.     

The association between bladder-emptying methods and health-related quality of life among Iranian individuals with spinal cord injury

Objectives: In this study, we compared the health-related quality of life (HRQoL) among patients with spinal cord injury (SCI) using different bladder emptying methods including normal spontaneous micturition (NSM), micturition with assisted maneuvers (MAM), aseptic intermittent catheterization by patient (IC-P), aseptic IC by an attendant/caregiver (IC-A) and indwelling catheterization.

Design: Cross-sectional.

Setting: Tertiary rehabilitation center.

Participants: Patients referred to Brain and Spinal Cord Injury Research Center between 2012 and 2014.

Outcome measures: HRQoL was assessed by Short Form Health Survey (SF-36). Hierarchical regression analysis with adjustment for probable confounders (demographic and injury-related variables) was performed to assess the relationship between bladder-emptying method and total SF-36 score.

Results: Patients with injury at cervical sections had significantly lower scores in domain of physical functioning (PF), physical component summary (PCS) and total score (P: 0.001, <0.0001 and 0.027, respectively). Longer time since injury was associated with better scores of PCS, Mental component summary (MCS) and total score (P: 0.002, <0.0001 and 0.003, respectively). Regression analysis showed that the effect of bladder-emptying method on total score of SF-36 was significant (P < 0.0001) and this relationship remained significant after adjustment for probable confounders in the second step of hierarchical regression analysis (R: 0.923, R²: 0.852, Adjusted R²: 0.847, P?<?0.0001). Patients with NSM had the highest scores in SF-36 instrument and individuals with indwelling catheterization had the poorest HRQoL in all domains.

Conclusion: This study shows that the type of bladder management method affects HRQoL significantly in patients with SCI. Intermittent catheterization are recommended to be administered instead of indwelling catheterization to improve HRQoL.     

A comparison of one year outcomes between standardized locomotor training and usual care after motor incomplete spinal cord injury: Community participation,quality of life and re-hospitalization

Context/Objective:Spinal cord injury (SCI) often results in a significant loss of mobility and independence coinciding with reports of decreased quality of life (QOL), community participation, and medical complications often requiring re-hospitalization. Locomotor training (LT), the repetition of stepping-like patterning has shown beneficial effects for improving walking ability after motor incomplete SCI, but the potential impact of LT on psychosocial outcomes has not been well-established. The purpose of this study was to evaluate one year QOL, community participation and re-hospitalization outcomes between individuals who participated in a standardized LT program and those who received usual care (UC).Design/Setting/Participants:A retrospective (nested case/control) analysis was completed using SCI Model Systems (SCIMS) data comparing one year post-injury outcomes between individuals with traumatic motor incomplete SCI who participated in standardized LT to those who received UC.Outcome Measures:Outcomes compared include the following: Satisfaction with Life Scale (SWLS™), Craig Handicap Assessment and Reporting Technique-Short Form (CHART-SF™), and whether or not an individual was re-hospitalized during the first year of injury.Results:Statistically significant improvements for the LT group were found in the following outcomes: SWLS (P = 0.019); and CHART subscales [mobility (P = <0.001)]; occupation (P = 0.028); with small to medium effects sizes.Conclusion:Individuals who completed a standardized LT intervention reported greater improvements in satisfaction with life, community participation, and fewer re-hospitalizations at one year post-injury in comparison to those who received UC. Future randomized controlled trials are needed to verify these findings.     

Obstacles to community participation among youth with spinal cord injury

Abstract

Objective

Examine caregiver-report of obstacles to community participation for youth with spinal cord injury (SCI), and explore relationships between obstacles and child, caregiver, and community characteristics.

Design

Two hundred and one primary caregivers of youth with SCI ages 7–17 years were interviewed at three pediatric SCI centers within a single-hospital system. Caregivers answered an open-ended question assessing obstacles to youth participation. A mixed-methods approach was incorporated, where qualitative methods analyzed caregiver-reported obstacles, and exploratory multivariate analyses examined relationships between obstacles and demographic variables.

Results

Caregivers were primarily mothers (74%), married (69%), employed (54%), had college experience (67%), and lived in small towns (55%). Youths' mean age was 12.60 years at interview and 7.19 years at injury, 70% had paraplegia, and 55% had complete injuries. Analyses revealed that youth participation was limited by obstacles across six domains: community, disability-related, practical concerns, child-internal, social, and other. Child, caregiver, and community characteristics were related to overall report of obstacles, and report of community obstacles, disability-related obstacles, and practical concerns. Caregiver college experience and small town living predicted overall report of obstacles. Having a child injured at a younger age, caregiver college experience, and small town living predicted community obstacles. Having a child with an incomplete injury and recent medical complication predicted disability-related obstacles. Caregiver employment predicted practical concerns.

Conclusion

Youth from small towns, those injured younger, those with incomplete injuries, and those experiencing recent medical complications may need additional supports and resources to maximize participation. Clinicians should work with caregivers to identify and problem-solve obstacles to youth participation.     

Obstacles to community participation among youth with spinal cord injury

Objective

Examine caregiver-report of obstacles to community participation for youth with spinal cord injury (SCI), and explore relationships between obstacles and child, caregiver, and community characteristics.

Design

Two hundred and one primary caregivers of youth with SCI ages 7–17 years were interviewed at three pediatric SCI centers within a single-hospital system. Caregivers answered an open-ended question assessing obstacles to youth participation. A mixed-methods approach was incorporated, where qualitative methods analyzed caregiver-reported obstacles, and exploratory multivariate analyses examined relationships between obstacles and demographic variables.

Results

Caregivers were primarily mothers (74%), married (69%), employed (54%), had college experience (67%), and lived in small towns (55%). Youths'' mean age was 12.60 years at interview and 7.19 years at injury, 70% had paraplegia, and 55% had complete injuries. Analyses revealed that youth participation was limited by obstacles across six domains: community, disability-related, practical concerns, child-internal, social, and other. Child, caregiver, and community characteristics were related to overall report of obstacles, and report of community obstacles, disability-related obstacles, and practical concerns. Caregiver college experience and small town living predicted overall report of obstacles. Having a child injured at a younger age, caregiver college experience, and small town living predicted community obstacles. Having a child with an incomplete injury and recent medical complication predicted disability-related obstacles. Caregiver employment predicted practical concerns.

Conclusion

Youth from small towns, those injured younger, those with incomplete injuries, and those experiencing recent medical complications may need additional supports and resources to maximize participation. Clinicians should work with caregivers to identify and problem-solve obstacles to youth participation.     

Secondary health conditions and disability among people with spinal cord injury: A prospective cohort study

Objective: To examine how secondary health conditions (SHCs) that develop early after a spinal cord injury (SCI) are related to disability over time.Design: Prospective cohort study.Setting: Two spinal units in New Zealand (Burwood Spinal Unit and Auckland Spinal Rehabilitation Unit).Participants: Between 2007 and 2009, 91 people participated in three telephone interviews approximately 6, 18, and 30 months after the occurrence of a SCI.Outcome measures: SHCs were measured using 14 items derived from the Secondary Complications Survey. Disability was measured using the 12-item World Health Organization Disability Assessment Schedule 2.0. Linear regression analyses were performed to investigate associations between SHCs at 6 months and disability at each assessment point.Results: The most prevalent SHCs were leg spasms, constipation, back pain, pain below the level of SCI, and shoulder pain. Constipation, urinary tract infection, and headaches at 6 months post-SCI were associated with significantly higher levels of disability at each subsequent follow-up, independent of age, sex and SCI impairment. Back pain, and pain below the SCI, at 6 months were associated with significantly greater disability at 18 months, and difficulty coughing at 6 months was associated with significantly greater disability at 30 months.Conclusion: The experience of specific SHCs in the first 6 months after an SCI is related to greater long-term disability. In order to reduce the disability burden of people with SCI, efforts should be directed toward early prevention of these SHCs.     

Measurement properties of a modified measure of participation for persons with spinal cord injury

Objective: The primary aim of this study was to examine and refine a modified measure of participation for adults with spinal cord injury (SCI) based on a conceptual model of participation.

Method: This study involved secondary analysis of data from a larger study designed to identify a standard measure of participation for use in SCI research. The larger study recruited 634 community-dwelling adults with SCI from seven collaborating SCI Model Systems Centers, of whom 520 subjects (average age 45.1 ± 13.6 years, 76% were male) completed the survey that is the focus of the present analysis. Content review, confirmatory factor analysis (CFA), Rasch analysis, and precision analysis were employed to select the items for the modified participation measure.

Results: Three participation domains were supported: Productivity, Social, and Community, that displayed good model-fit (CFI=0.984, TLI=0.982, RMSEA=0.043) in CFA and good item-fit (infit= 0.6 to 1.4) in Rasch analysis. Differential Item Functioning (DIF) was found in one item, however its magnitude was small. The precision of each scale was better for participants in the middle range of participation and was lower for participants with extremely low or high participation.

Conclusion: The study results support the proposed three-dimensional construct of participation by demonstrating good model-fit and item-fit. Ongoing efforts are needed to expand the domain coverage and increase the precision of the instrument.     

Functional independence of persons with long-standing motor complete spinal cord injury in the Netherlands

Context/Objective: Since life expectancy of persons with spinal cord injury (SCI) has improved, it is relevant to know whether this group is able to maintain functional abilities many years after onset of SCI. Objectives of this study were (1) to examine associations between time since injury (TSI) and functional independence in persons with long-standing SCI and (2) to explore associations between functional independence and level of injury, comorbidities, mental health, waist circumference and secondary health conditions (SHCs).

Design: TSI-stratified cross-sectional study. Strata were 10–19, 20–29 and 30+ years.

Setting: Community.

Participants: 226 persons with long-standing SCI. Inclusion criteria: motor complete SCI; age at injury 18–35 years; TSI?≥?10 years; current age 28–65 years; wheelchair dependency.

Interventions: Not applicable.

Outcome measures: The Spinal Cord Independence Measure III (SCIM) was administered by a trained research assistant. Level of injury, comorbidities, mental health, waist circumference and SHCs were assessed by a rehabilitation physician.

Results: Mean TSI was 23.6 (SD 9.1) years. No significant differences in SCIM scores were found between TSI strata. SCIM scores were lower for persons with tetraplegia, autonomic dysreflexia, hypotension, more than four SHCs and a high waist circumference. In linear regression analyses, TSI nor age was associated with the SCIM total score. Only level of injury (β?=?–0.7; P?<?.001) and waist circumference (β?=?–0.1; P?=?.042) were independent determinants (explained variance 55%).

Conclusion: We found no association between TSI and functional independence in persons with long-standing motor complete SCI. This study confirms the possible effect of overweight on functional independence.     

家居环境改造对脊髓损伤患者日常生活能力及并发症的影响

目的探讨家居环境改造对脊髓损伤患者日常生活能力(ADL)及并发症的影响。方法将54例脊髓损伤患者分为观察组(28例)和对照组(26例)。对照组出院后按常规定期进行康复指导及康复训练;观察组在此基础上,与装修公司技术人员合作指导患者进行家居环境改造。结果观察组出院3个月、6个月ADL评分高于对照组,两组比较,干预主效应P<0.05;出院6个月两组肌肉萎缩的发生率比较,差异有统计学意义(P<0.01)。结论对脊髓损伤患者进行预见性家庭环境改造,能最大限度地利用其残存功能,提高日常生活能力,减少并发症的发生。     

Community exercise programing and its potential influence on quality of life and functional reach for individuals with spinal cord injury*

Context/Objective: After an individual with a Spinal Cord Injury (SCI) participates in the initial rehabilitation process, they often experience limited access to physical therapy services and other fitness activities. The purpose of this study was to examine previously collected data for changes in quality of life (QoL) and functional reach in individuals with SCI following an 8-week community exercise program.

Design: Secondary analysis of previously collected data.

Setting: Community-based exercise program.

Participants: Twenty-two participants with an average of 9 years post-SCI, both complete and incomplete injuries, and injury levels ranging from C2 to L5.

Interventions: Participants completed an 8-week program, once per week for 4 hours that included a four-station circuit of resistance training, aerobic exercise, trunk stability, and education.

Outcome Measures: Physical function was measured using the modified Functional Reach Test (mFRT). QoL was measured with the Life Satisfaction Questionnaire-9 (LiSAT-9).

Results: The mFRT improved by 2 inches (±7.04) P?<?0.001 and QoL improved as well, P?<?0.001.

Conclusion: The findings of this study are consistent with the hypothesis that a supervised post-rehabilitation community exercise program, like Spinal Mobility, may positively impact the QoL and functional reach in individuals with SCI.     

Physical activity and quality of life in adults with spinal cord injury

Background/Objective:

To document the relationship between level of physical activity and quality of life in persons with spinal cord injury.

Design:

Cross-sectional investigation.

Participants/Methods:

Men (n = 32) and women (n = 30) with complete and incomplete spinal cord lesions below C6 volunteered to participate in this study. The average length of time since the onset of disability was 9 years (range, 1.5–40 years). Using an interview-formatted survey (Quality of Well-Being Scale), a measure of quality of life was obtained for each participant. Physical activity levels were determined using the Physical Activity Scale for Individuals with Physical Disabilities.

Results:

A strong positive association (r = 0.75; P < 0.05) was observed between level of physical activity and quality of life. Multiple regression analysis also showed that when level of physical activity, anatomical location of the injury, completeness of injury, and time since injury were used as explanatory variables, level of physical activity was the only significant predictor of quality of life, accounting for 56% of the total variation in quality of life.

Conclusions:

Results from this study show that a significant and moderately strong positive relationship exists between level of physical activity and quality of life in adults with spinal cord injury. From a clinical perspective, these findings suggest that interventions aimed at promoting physical activity may be effective in improving quality of life in this population.     

Housing accessibility and its associations with participation among older adults living with long-standing spinal cord injury

Objectives: To describe the housing situation and aspects of participation among older adults living with long-standing spinal cord injury (SCI) with attention to SCI severity, and to examine whether and how objective housing accessibility (based on objectively measurable criteria) is associated with aspects of participation.

Design: Cross-sectional study utilizing the assessment tools Impact on Participation and Autonomy (IPA) and Housing Enabler (HE). Adjusting for demographic, social and injury related data, associations between objective housing accessibility and aspects of participation were analyzed by means of ordinal regression models.

Setting: Home and community settings.

Participants: Older adults (≥ 50 years) (N?=?123), with a traumatic or non-traumatic SCI for at least 10 years. To make comparisons within the sample, three groups of SCI severity were formed using the American Spinal Injury Association (ASIA) Impairment Scale.

Results: Housing adaptations and environmental barriers were common and differed between SCI severity groups; those with AIS D injuries had fewer adaptations and more environmental barriers indoors. A majority of the participants in the total sample perceived their participation as good or very good in most of the IPA activities studied. Accessibility indoors was significantly associated with autonomy indoors (P?=?0.009), family role (P?=?0.002) and participation problems (P?=?0.004); more accessibility problems were associated with less participation and more participation problems.

Conclusion: This study indicates that optimizing the housing environment for older adults with SCI can potentially increase their participation and make them more autonomous. Further studies based on longitudinal data are needed to determine the causality of the associations identified.     

Physical therapy after spinal cord injury: A systematic review of treatments focused on participation

Abstract

Context

Over the last four decades, the focus of spinal cord injury (SCI) rehabilitation has shifted from medical management to issues that affect quality of life and community participation. Physical therapists (PTs) need to design and implement interventions that result in maximal participation to provide an individual with SCI an effective rehabilitation program.

Objective

The aim of this review is to assess the extent, content, and outcomes of physical therapy (PT) interventions focused on improving the participation of individuals with SCI.

Methods

A search was conducted in Medline, Embase, CENTRAL, CINAHL, PEDro, and PsycINFO. We included studies, of all designs, focused on improving the participation of individuals with SCI using PT interventions.The primary author and a reviewer independently selected articles for inclusion, assessed articles quality, and extracted the data.

Results

Five studies met the inclusion criteria. The interventions applied were 9- and 12-month body weight-supported treadmill training in two studies, a supervised 9-month exercise program, a 12-week home exercise program, and a 10-week multidisciplinary cognitive behavioral program for coping with chronic neuropathic pain. Four of five PT interventions positively impacted the individual's perceived participation and satisfaction with participation.

Conclusion

The body of research by PTs on interventions to improve participation is limited. PTs must document the effects of interventions with a valid outcome tool to enable more research that examines participation. Expanding participation research will allow PTs to meet the needs of individuals with SCI and identify what interventions best facilitate integration into the community.     

不同延续性护理方式对脊髓损伤患者生存质量及康复的影响

目的 :评价家庭访视、电话随访、护理门诊随访三种延续性护理方式对脊髓损伤患者的生存质量和康复的影响。方法:选择在我院治疗的90例脊髓损伤患者,随机分为3组,每组30例,分别采用家庭访视(A组)、电话随访(B组)和护理门诊随访(C组)的方式施以延续性护理,以功能独立性量表、社会交往测定表、社会支持评定量表、生存质量测定量表简表及并发症调查表评价出院12个月后三组患者的生活质量及康复状况。结果:三组患者的年龄、性别比、损伤节段、损伤原因、ASIA分级及干预前的生存质量评分均无统计学差异(P0.05);干预12个月后,三组患者的生存质量评分与干预前比较均有显著性提高(P0.05);A组患者的生存质量评分显著高于B组;A组患者的便秘(10.0%)、尿路感染(6.7%)、肺部感染(0)的发生率和再入院率(19.0%)均低于对照B组(P0.05),压疮发生率(6.7%)低于B组(36.7%)和C组(13.3%)(P0.05)。结论:三种延续性护理方式均可明显提高患者的生存质量,但家庭访视的效果更好,可降低患者再次入院率及并发症。