Spinal Cord Injury Dysfunction Research Articles

Exploring and prioritizing content to include in a medication self-management toolkit for persons with spinal cord injury/dysfunction: A concept mapping approach.

Adults with spinal cord injury/dysfunction (SCI/D) face challenges with medications they take to manage their secondary conditions (e.g., pain, urinary tract infections, autonomic dysreflexia). With many healthcare providers typically involved in care, there are additional challenges with care fragmentation and self-management. Prior research emphasized the desire for more support with medication self-management among this population. To explore what content should be included in a medication self-management resource (i.e., toolkit) for adults with SCI/D, as well as considerations for delivery from the perspectives of adults with SCI/D, caregivers, healthcare providers, and representatives from community organizations. A concept mapping study was conducted. Participants took part in one or more of three activities: brainstorming; sorting and rating; and mapping. Participants generated ideas about the content to include in a medication self-management toolkit. Participants sorted the statements into conceptual piles and assigned a name to each. All statements were rated on a five-point Likert-type scale on importance and realistic to include in the toolkit. Participants decided on the final cluster map, rearranged statements, and assigned a name to each cluster to create visual representations of the data. Forty-four participants took part in this study. The final map contained eight clusters: 1) information-sharing and communication; 2) healthcare provider interactions and involvement; 3) peer and community connections; 4) supports and services for accessing prescription medications and medication information; 5) information on non-prescription medication and medication supplies; 6) safety and lifestyle considerations; 7) general medication information; and 8) practical information and strategies related to medication-taking. Safety and lifestyle considerations was rated as the most important and realistic to include in the toolkit. Given the limited tools to help adults with SCI/D with managing their medications, there is great potential to better support this population across all areas of medication self-management.

Examining the impact of COVID-19 on health care utilization among persons with chronic spinal cord injury/dysfunction: a population study.

A retrospective longitudinal cohort time-series analysis study. To examine healthcare utilization and delivery during the COVID-19 pandemic in individuals with spinal cord injury/dysfunction (SCI/D). Health administrative database in Ontario, Canada. In 5754 individuals with SCI/D diagnosed from 2004-2014 and living in the community, healthcare utilization (physician visits, primary care visits, specialist visits, urologist visits, physiatrist visits, emergency department (ED) visits, and hospital admissions) and delivery (total, in-person, virtual) were determined at the (1) pre-pandemic period (March 2015 to February 2020), (2) initial pandemic onset period (March 2020-May 2020), and (3) pandemic period (June 2020 to March 2022). Autoregressive integrated moving average (ARIMA) modelling was conducted to determine the impact of the pandemic on monthly healthcare utilization and delivery. The initial pandemic onset period had a significant reduction of 24% in physicians (p = 0.0081), 35% in specialists (p < 0.0001), and 30% in urologist (p < 0.0001) visits, compared to pre-pandemic levels, with a partial recovery as the pandemic progressed. In April 2020, compared to the pre-pandemic period, a significant increase (p < 0.0001) in virtual visits for physicians, specialists, urologists, and primary care was found. The initial pandemic onset period had a 58% decrease in hospital admissions (p = 0.0011), compared to the pre-pandemic period. Healthcare utilization dropped in the initial pandemic onset period as physicians, specialists, and urologists, as well as hospitalization visits decreased significantly (p < 0.05) versus pre-pandemic levels. Virtual visit increases compensated for in-person visit decreases as the pandemic progressed to allow for total visits to partially recover.

Post Doc Competition (Health Services, Economics and Policy Change) ID 1985179

Background/Objectives The COVID-19 pandemic has significantly impacted healthcare utilization; however, research has not investigated the impact in the spinal cord injury/dysfunction (SCI/D) population in Canada. To examine healthcare utilization and delivery during the COVID-19 pandemic in individuals with SCI/D. Methods/Overview A repeated-cross sectional retrospective longitudinal cohort study design was conducted using health administrative database in Ontario, Canada. In 5,754 individuals with SCI/D, healthcare utilization and delivery (in-person, and virtual) were determined at the 1) pre-pandemic (March 2015 to February 2020), 2) initial pandemic onset (March 2020-May 2020), and 3) pandemic (June 2020 to March 2022) phases. Autoregressive integrated moving average (ARIMA) modelling were conducted to determine pandemic impact on monthly healthcare utilization and delivery. Results The initial pandemic onset period had a significant reduction of 24% in physician (p=0.0081), 35% in specialist (p&amp;lt;0.0001), and 30% in urologist (p&amp;lt;0.0001) visits, compared to pre-pandemic levels, with a partial recovery as the pandemic progressed. In April 2020, compared to the pre-pandemic period, a significant increase (p&amp;lt;0.0001) for virtual visits for physician, specialist, urologist, and primary care was found. The initial pandemic onset period had a 46% decrease in ED visits (p=0.0764) and 58% decrease in hospital admissions (p=0.0011), compared to the pre-pandemic period. Conclusion Healthcare utilization dropped in the initial pandemic onset period as physician, specialist, urologist, and ED visits, as well as hospitalization decreased significantly (p&amp;lt;0.05) versus pre-pandemic levels. Virtual visit increases compensated for in-person visit decreases as the pandemic progressed to allow for total visits to partially recover.

Evaluation of the International Spinal Cord Injury Bowel Function Basic Data Set Version 2.0 in Children and Youth With Spinal Cord Injury.

To establish the utility and feasibility of the International Spinal Cord Injury/Dysfunction (SCI/D) Bowel Function Basic Data Set Version 2.0 in pediatric SCI populations. This was a noninterventional, repeated measure design conducted in Pennsylvania, Maryland, Illinois, Kentucky, and South Carolina. The International Spinal Cord Injury/Dysfunction (SCI/D) Bowel Function Basic Data Set Version 2.0 was administered repeatedly, twice at the point of care and once over the phone. Time to complete the data set was recorded. Inter- and intrarater reliability was examined by intraclass correlation coefficients (ICC) with 95% confidence intervals (CI), and agreement between the bowel function basic data set variables and medical records was calculated using percentages. Intrarater reliability involved the same person administering the data once at the point of care and once over the phone. Forty-one children/youth ages 1 to 20 years participated in this study. Average time to complete the data set was 5.17 minutes. Interrater reliability was good to excellent (ICC ≥ 0.75) for most variables. Five variables had moderate interrater reliability (ICC = 0.05-0.74) and three had poor interrater reliability (ICC < 0.05). With the exception of one variable that had poor intrarater reliability (constipating agent, ICC = 0.00) and one that approached moderate reliability (digital evacuation, ICC = 0.74), intrarater reliability was good to strong for every bowel variable (ICC = 0.88-1.00). Only 12 (32%) medical records had explicit documentation of one or more of the variables on the Basic Bowel Function Basic Data Set V2.0. The results support future research with a larger and more diverse sample of children with SCI to build upon the psychometric work described herein.

Examination of the Relationships Among Social Networks and Loneliness on Health and Life Satisfaction in People with Spinal Cord Injury/Dysfunction

ObjectiveTo examine the associations among social networks and loneliness on health and life satisfaction in adults with chronic spinal cord injury/dysfunction (SCI/D). DesignCross-sectional telephone survey study. SettingTertiary spinal cord injury rehabilitation center in Ontario, Canada. ParticipantsCommunity-dwelling adults with chronic SCI/D (N=170). InterventionsNot applicable. Main Outcome MeasuresThe main outcome measures were the Short-Form 36 to assess health and the Life Satisfaction-11 to assess life satisfaction. ResultsA hierarchical regression model predicting physical health accounted for 24% (P<.001) of the variance. The only social network variable to significantly contribute to the model was having a higher proportion of network members living in one's household (P<.05). A model predicting mental health accounted for 44% (P<.001) of the variance, with having a higher proportion of network members living in one's household (P<.05) and lower feelings of loneliness (P<.001) associated with better mental health. Finally, the model predicting life satisfaction accounted for 62% (P<.001) of the variance, with lower greater levels of social network intimacy (P<.01) and lower feelings of loneliness (P<.001) being significant predictors. ConclusionsThese findings highlight the importance of having access to network members in one's home for better physical and mental health after SCI/D as well as the negative association between loneliness and mental health and life satisfaction. There is a need for approaches to ensure that people with SCI/D in the community feel supported to mitigate feelings of loneliness to optimize their health and wellbeing.

An exploration of attitudes and preferences towards medications among healthcare providers and persons with spinal cord injury/dysfunction: a qualitative comparison

Purpose To compare the attitudes and preferences of persons with spinal cord injury/dysfunction (SCI/D) and healthcare providers regarding prescription medications, over-the-counter medications, and natural health products (NHPs). Materials and methods A qualitative study involving semi-structured interviews with healthcare providers (n = 32) and persons with SCI/D (n = 19) in Canada. Inductive descriptive and interpretive analyses were conducted using data display matrices and a constant comparative approach. Results Participants described differing perceptions of therapeutic benefits based on medication type, with shared attitudes about the therapeutic benefits of prescription medications and differing views about the effectiveness of NHPs. Despite the perceived effectiveness of prescription medications, persons with SCI/D preferred to avoid them due to concerns about side effects, safety, and stigma. Persons with SCI/D were often concerned about the long-term safety of prescription medications, whereas providers focused more on medication-related addictions. Participants discussed stigma relating to prescription medications, NHPs, and medicinal marijuana. Conclusion Healthcare providers and persons with SCI/D described different attitudes about and preferences for pharmacotherapeutic products, contributing to challenges in optimizing medication management. Strategies to improve medication management include shared decision-making to incorporate patient preferences into care plans and explicit discussions about long-term medication safety. Further, steps are needed to combat the stigma associated with medication use. Implications for rehabilitation Following a person-centered approach to shared decision-making, prescribers should initiate explicit conversations about patient medication preferences, short and long-term prescription medication side effects, and alternative treatment options. Regarding prescription medication safety, persons with spinal cord injury/dysfunction focused on the long term impact of medications, while providers focused on medication-related addictions, highlighting a disconnect that should be discussed during initiation, continuation, or discontinuation of a medication. Providers should be mindful of the stigma associated with taking multiple prescription medications, including medicinal marijuana, as well as the stigma associated with over-the-counter medications and natural health products. Providers could benefit from education about spinal cord injury/dysfunction-specific prescription medications and could benefit from increased education about natural health products.

Spinal cord injury/dysfunction and medication management: a qualitative study exploring the experiences of community-dwelling adults in Ontario, Canada

Purpose To explore the attitudes, beliefs and experiences pertaining to the management of prescribed and unprescribed medications among community-dwelling adults with spinal cord injury/dysfunction (SCI/D) in Ontario, Canada. Materials and Methods In-depth semi-structured interviews were conducted by telephone. Each interview was audio-recorded, transcribed verbatim and analyzed using inductive thematic analysis. Results Of the 19 participants, 11 were male and 8 were female, with an age range from 36 to 76 years; 14 participants had traumatic SCI and 5 had non-traumatic spinal cord dysfunction. All but three participants were taking five or more medications, including prescription medications, over-the-counter medications and natural health products. The three main themes identified were: disruptive nature of medications, fear of negative outcomes and self-management: playing a critical role. Conclusions Medication management is a complex, multifaceted and non-linear process. Persons with SCI/D described experiences with medication-taking that are not well understood by current medication management frameworks. Thus, it is essential to broaden our lens and situate persons with SCI/D medication-taking experiences within self-management frameworks to allow for a more comprehensive and reflective understanding of their experiences. Based on the findings from this study, recommendations for future research, practice and policy have been suggested. IMPLICATIONS FOR REHABILITATION Persons with spinal cord injury/dysfunction identified numerous challenges and concerns with medication use post-injury. Educational medication management programs should be implemented post-discharge to improve the state of knowledge around medications (indication, side effects, strategies for taking medications) and how to optimize medication management. In order to optimize experiences and outcomes, there is a need for explicit and ongoing discussions around medication management between persons with spinal cord injury/dysfunction and their healthcare providers.

Exploring the perspectives on medication self-management among persons with spinal cord injury/dysfunction and providers.

Spinal cord injury/dysfunction (SCI/D) is an exemplar condition with a high prevalence of secondary complications, chronic conditions and use of multiple medications (polypharmacy). Optimizing medication self-management is important for persons with SCI/D to improve outcomes; however, there is a lack of research on how healthcare/service providers and persons with SCI/D experience medication self-management. To explore attitudes and experiences of medication self-management from the perspectives of persons with SCI/D and providers, and to explore the extent to which the Taxonomy of Everyday Self-management Strategies (TEDSS) framework captured participants' experiences with medication self-management. In-depth, semi-structured interviews were conducted by telephone until data saturation was reached. Interviews were transcribed verbatim and analyzed using constant comparative approaches. The TEDSS framework was adapted and applied deductively. Fifty-one individuals participated in this study, 32 providers and 19 persons with SCI/D. Disease controlling strategies was the domain discussed in most detail by all participants. In this domain, participants discussed managing medications and treatments, monitoring/managing side effects, and controlling complications. Process strategies (problem-solving, decision-making) and resource strategies (seeking support) were the next most frequently discussed domains. Among all participant groups, there was a lack of detailed discussion of social interactions, health behaviour, and internal strategies. Medication self-management support was not extensively discussed by any group. This study highlighted the complex nature of medication self-management. While persons with SCI/D and providers discussed similar components of the TEDSS framework, providers had minimal reflections on the impact of medication self-management on everyday life. This study identified the need for explicit discussions between providers and persons with SCI/D, involving all components of self-management and self-management support in order to improve medication self-management.

\u201cThe strategies are the same, the problems may be different\u201d: a qualitative study exploring the experiences of healthcare and service providers with medication therapy management for individuals with spinal cord injury/dysfunction

BackgroundPersons with spinal cord injury/dysfunction (SCI/D) often take multiple medications to treat their secondary complications and chronic conditions (multimorbidity). Multiple healthcare and service providers are often involved in care, which can result in increased risk of fragmentation of care. Optimal medication therapy management (MTM) is essential to ensure therapeutic benefit from medication regimens. However, little is known about the experiences of providers in supporting persons with SCI/D with MTM.MethodsTelephone interviews were conducted to explore healthcare and service providers’ experiences with MTM for persons with SCI/D. Participants were recruited through clinical organizations and researchers’ personal contacts. Participants were purposefully selected for diversity in profession and were required to be English speaking and to have provided care to at least one person with SCI/D. The qualitative interviews followed a semi-structured interview guide. Data display matrices were used in a constant comparative process for descriptive and interpretive analysis.ResultsThirty-two interviews were conducted from April to December 2018. Each profession had distinct views on their roles in facilitating MTM for persons with SCI/D, which aligned with their respective scopes of practice. Shared provider tasks included tailoring medications, providing education, and exploring medication alternatives. Most participants felt that the care they provided for persons with SCI/D was similar to the care that they provided to other patients, with some differences relating to the physical limitations and medical complexity associated with SCI/D. Five factors were identified that impacted participants’ abilities to provide MTM for persons with SCI/D: patient self-management skills, provider knowledge and confidence, provider-patient relationships, interprofessional collaboration, and provider funding models including the use of technology-supported consultations.ConclusionWhile participants described commonalities in the barriers and enablers associated with providing MTM to persons with SCI/D and other populations, there were unique considerations identified. These SCI/D-specific considerations resulted in recommendations for improvements in MTM for this population. Future research should include perspectives from persons with SCI/D.

Development of the International Spinal Cord Injury/Dysfunction Education Basic Data Set.

Consensus among international experts. The objective of this project was to develop the International Spinal Cord Injury/Dysfunction (SCI/D) Education Basic Data Set. International expert working group. The published guidelines for developing the International SCI Basic Data Sets were used to develop the International SCI/D Education Basic Data Set. Existing measures and literature on education and disability were reviewed to develop a preliminary draft of the basic education data set through iterative modifications via biweekly conference calls and email communication. The draft was disseminated to the larger International Workgroup for Development of Pediatric SCI/D Basic Data Sets and then to the members of the International Spinal Cord Society (ISCoS), American Spinal Injury Association (ASIA), and relevant expert groups and interested individuals for comments. All feedback received was taken into consideration before the final data set was approved by ISCoS and ASIA. The finalized version of the International SCI/D Education Basic Data Set Version 1.0 contains 16 items divided into three domains: school setting/therapeutic services, school participation/academic success, and barriers/attitudes. Most of the variables have been adapted from established measures. This data set is intended for children and youth up to and including high school, but not for emerging adults in higher education or postsecondary vocational training or trade schools. The International SCI/D Education Basic Data Set has been developed for collection of a minimal amount of highly relevant information on the education experience in children and youth with SCI/D. Further validation work is needed. This project was funded by the Rick Hansen Institute, Research Award #G2015-27 (Mulcahey, PI).

Dating and Relationship Psychoeducational Group for Veterans with Spinal Cord Injury/Dysfunction: A Historical Account of an Initial Clinical Course

Numerous studies have examined sexual functioning among persons with paraplegia and quadriplegia. None have detailed a group skill model teaching social skills in the areas of dating and intimate relationships and little in the literature has focused on this important aspect of sexuality. A psychoeducational group for individuals with spinal cord injury/dysfunction (SCI/D) was developed to address social, dating, and relationship skills, as well as improve self-efficacy, confidence and quality of life. Seven male veterans with SCI/D, age 32–51, participated in a 12-week psychoeducational social skills training group that met weekly for 60 min. Sessions were structured to focus on one theme or set of skills, and homework was given at the end of each session. Participants answered pre and post questionnaires about their general well-being, self-esteem, depression, anxiety, and social skills in general and specific to dating and relationships. A 12-week follow-up session reviewed the constructs. All participants reported positive experiences in the group and improvement in targeted areas. A detailed outline of session topics, exercises and handouts are presented as well as pre and post feedback on functioning, knowledge and attitudes among group participants.

Coping effectiveness training during acute rehabilitation of spinal cord injury/dysfunction: A randomized clinical trial.

To compare coping effectiveness training (CET) with supportive group therapy (SGT) for anxiety, depression, and adjustment to injury in an acute spinal cord injury/dysfunction (SCI/D) rehabilitation population. CET was shown to result in decreased anxiety and depression symptoms when compared to historical no-treatment control groups (Kennedy, Duff, Evans, & Beedie, 2003; King & Kennedy, 1999). The present study sought to extend those findings with a comparison of CET to an alternative active therapy condition, SGT. Participants (N = 40) entering a hospital-based program were assigned to treatment condition using block randomization. Questionnaire mood measures were completed at program admission, program discharge, and 3-month postdischarge follow-up. Adjustment to disability was assessed at follow-up only. Analyses of variance tested for group differences in anxiety, depression, and adjustment to injury. Both groups reported reductions in mood symptoms with no differences between treatment conditions. However, similar reductions were obtained after fewer sessions of CET. Symptoms of depression increased in both groups following hospital discharge. Clinical and research implications, including innovative interventions during the period after discharge, are discussed.

Treatment Of Major Depression In Individuals With Spinal Cord Injury

Objective: This study evaluated the effects of treating major depression in individuals with spinal cord injury (SCI), focusing on the degree of improvement and correlated changes that could be expected in 6 months of treatment.Design: Apretreatment–posttreatment designwas used. Random assignment to a nontreatment group could not be implemented ethically. Therefore, this study compared participants who declined treatment to persons who accepted treatment over a 24–month period.Setting and Participants: Participants were outpatients of a large urban rehabilitation center in southern California. Twenty–eight participants who accepted treatment were assigned to a treatment group; 15 individuals who declined treatment were assigned to a nontreatment group. The age of the participants ranged from 20 to 7 4 years. Varying Ieveis of SCI dysfunction were represented. lnterventio1,1s: A 6–month combination of psychotherapy and antidepressant medication.Outcome Measures: Adepression inventory, a community activities checklist, and a life satisfaction scale.Results: A significant (P < 0.001) 57% reduction in depressive symptoms occurred in the treatment group, whereas there was no significant change in the nontreatment group. At theend of 6 months, 30% of participantshad no depression, 42%had minor depression, and 297% still had major depression, butto a lesser degree.Community activities increased significantly over the treatment period, as did life satisfaction.Conclusion: The results suggest that depression is treatable in this population, although 6 months may not be sufficient to reach maximum benefit in all cases. This study further identified obstacles that limited the ability to randomize participants into treatment arms and made it difficult to deliver services to all those in need. Complications related to SCI, such as difficulties in transportation, likely restriet the ability to implement needed services to many individuals with SCI.