Detecting subgroups in social participation among individuals living with spinal cord injury: a longitudinal analysis of community survey data

Gross-Hemmi, Mirja; Fekete, Christine; Post, Marcel W M; Scheel‐Sailer, Anke; Schwegler, Urban; Brinkhof, Martin W. G.

doi:10.1038/s41393-020-00576-3

Cited by 12 publications

(5 citation statements)

References 31 publications

(58 reference statements)

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“…Also, female patients have cultural issues in the Chinese society, which leads to poor quality of life (6). The findings of the current study agree with those of cross-sectional studies on the Jordan population (1), Iranian population (22), and Chinese population (6) with traumatic spinal cord injuries and with those of longitudinal multicenter studies on the European population (15,23). The strengths and weaknesses of patients after spinal cord injuries must be taken into account to improve the quality of life of patients.…”

Section: Discussionsupporting

confidence: 87%

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Identification and relationship of quality of life and self-care ability among Chinese patients with traumatic spinal cord injuries: a cross-sectional analysis

Jiang

Sun

Meng

2021

Braz J Med Biol Res

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Improving the quality of life of patients with complete spinal cord injuries is an urgent objective of the Chinese Department of Health. For better management of spinal cord injuries, it is necessary to understand the background of the patients. A total of 392 patients aged X18 years with traumatic spinal cord injuries (X1 year of history) were attending the rehabilitation center of the Institutes. A total of 7 (2%) patients reported low quality of life, 200 (51%) patients reported moderate quality of life, 181 (46%) patients reported good quality of life, and 4 (1%) patients reported excellent quality of life. Male patients (P=0.042), patients with college or more education (P=0.039), incomplete spinal cord injuries (P=0.045), paraplegia (P=0.046), and absence of pressure injury (P=0.047) were associated with higher quality of life. A total of 81 (21%) patients were dependent on the caregiver, 85 (22%) patients were highly dependent on the caregiver, 155 (40%) patients were moderately dependent on the caregiver, 60 (15%) patients were mildly dependent on the caregiver, and 11 (2%) patients were independent for activities of daily living. An incomplete spinal cord injury (P=0.045) and paraplegia (P=0.041) were associated with higher independence in activities of daily living of patients. The independence in activities of daily living and quality of life of the Chinese population with complete spinal cord injury and tetraplegia are poor (Level of Evidence: IV; Technical Efficacy Stage: 5).

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Section: Discussionsupporting

confidence: 87%

“…Rehabilitation can decrease dependency even in the highest level of injury. Better health-related conditions and financial aspects improve the quality of life of patients with spinal cord injuries (15).…”

Section: Introductionmentioning

confidence: 99%

Identification and relationship of quality of life and self-care ability among Chinese patients with traumatic spinal cord injuries: a cross-sectional analysis

Jiang

Sun

Meng

2021

Braz J Med Biol Res

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“…Similar to other studies, SCI was common in the early middle-aged population (Brinkhof et al 2016 ; Madasa et al 2020 ; Pefile, Mothabeng & Naidoo 2018 ). The average age of people living with SCI is like local findings (Joseph & Nilsson Wikmar 2016 ) and is much younger compared to international findings (Gross-Hemmi et al 2021 ). We must note that we did not find a significant association between age and the presence of pain, like findings by Hassanijirdehi et al ( 2015 ).…”

Section: Discussionsupporting

confidence: 49%

The presence of pain in community-dwelling South African manual wheelchair users with spinal cord injury

Mashola

Korkie

Mothabeng

2022

S. Afr. j. physiother.

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Objective: To determine the presence of pain, the sociodemographic and injury profile of community-dwelling manual wheelchair users.Method: This quantitative correlational study used a sociodemographic and injury profile sheet and the Douleur Neuropathique 4 Questions (DN4) questionnaire to document demographic, SCI profiles as well as pain characteristics. Pain severity was determined using the Numeric Rating Scale. Data were analysed using the Statistical Package for the Social Sciences (SPSS) v27 at 0.05 level of significance. Results:The pain rate was 104; 85% of 122 participants and mainly in those with complete SCI (77.9%). Neuropathic pain was more common (76; 62.5%) and significantly associated (p < 0.05) with higher pain severity. Pain was mainly in one area of the body (59; 48.4%) but occurring in up to five areas. The most painful area had a mean severity of 6.7/10; was more common in the lower limbs below the injury level (48; 39.4%); and was burning in nature (40; 32.7%).Conclusions: Pain after SCI is as problematic in the South African context as it is globally. With the rising SCI prevalence in the country, understanding pain and its presentation is important for holistic management of a person with SCI. Clinical implications:In-depth assessment of pain should be conducted and appropriate management interventions for specific pain types be prescribed to effectively reduce pain.

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“…Nevertheless, many of the mentioned aspects-for example, the presence of muscle spasms in participants with SCI/D, pain, and bowel and bladder management issueswere already part of the most important research topics and research plans for adults and could be specifically addressed in younger people [1]. Recent research concerning access to health services has been conducted utilizing new methodological concepts and health system interventions that can be used to optimize the satisfaction of young people and families living with SCI/D or SB [19,40]. The results obtained for mobility and accessibility showed that these domains play an important role in the young people's and parents' everyday lives.…”

Section: Importance Satisfaction and Research Prioritiesmentioning

confidence: 99%

Needs and Research Priorities for Young People with Spinal Cord Lesion or Spina Bifida and Their Caregivers: A National Survey in Switzerland within the PEPSCI Collaboration

et al. 2022

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The aim of this study was to describe the needs and research priorities of Swiss children/adolescents and young adults (from here, “young people”) with spinal cord injury/disorder (SCI/D) or spina bifida (SB) and their parents in the health and life domains as part of the international Pan-European Pediatric Spinal Cord Injury (PEPSCI) collaboration. Surveys included queries about the satisfaction, importance, research priorities, quality of life (QoL), and characteristics of the young people. Fifty-three surveys with corresponding parent-proxy reports were collected between April and November 2019. The self-report QoL sum scores from young people with SCI/D and SB were 77% and 73%, respectively. Parent-proxy report QoL sum scores were lower, with 70% scores for parents of young people with SCI/D and 64% scores for parents of young people with SB. “Having fun”, “relation to family members”, and “physical functioning” were found to be highly important for all young people. “Physical functioning”, “prevention of pressure injuries”, “general health”, and “bowel management” received the highest scores for research priority in at least one of the subgroups. As parents tend to underestimate the QoL of their children and young people prioritized research topics differently, both young peoples’ and caregivers’ perspectives should be included in the selection of research topics.

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Detecting subgroups in social participation among individuals living with spinal cord injury: a longitudinal analysis of community survey data

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Cited by 12 publications

References 31 publications

Identification and relationship of quality of life and self-care ability among Chinese patients with traumatic spinal cord injuries: a cross-sectional analysis

Identification and relationship of quality of life and self-care ability among Chinese patients with traumatic spinal cord injuries: a cross-sectional analysis

The presence of pain in community-dwelling South African manual wheelchair users with spinal cord injury

Needs and Research Priorities for Young People with Spinal Cord Lesion or Spina Bifida and Their Caregivers: A National Survey in Switzerland within the PEPSCI Collaboration

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