First contact of care for persons with spinal cord injury: a general practitioner or a spinal cord injury specialist?

BACKGROUND: Although general practitioners (GPs) are generally considered as the first point of contact for care, this may be different for persons with complex conditions, such as those with spinal cord injury (SCI). The objective of this study is to understand the differences in long-term care provision by GPs and SCI-specialists, by examining (1) the first contact of care for SCI health problems, (2) the morbidity profile and use of health-care services in relation to first contact, and (3) the factors associated with the choice of first contact. METHODS: In this cross-sectional study based on data derived from the Swiss Spinal Cord Injury Cohort Study Community Survey 2017, the main outcome measure was the reported first contact for SCI-specific care. This information was analysed using the chi-square test and logistic regression analysis of groups based on patient characteristics, use of health-care services and secondary health conditions assessed using the Spinal Cord Injury Secondary Conditions Scale (SCI-SCS). RESULTS: Out of 1294 respondents, 1095 reported their first contact for SCI-specific care; 56% indicated SCI-specialists and 44% specified GPs. On average, participants who first contacted a GP reported higher number of GP consultations (5.1 ± 5.2 vs. 3.9 ± 7.2), planned visits to ambulatory clinics (3.7 ± 7.3 vs. 3.6 ± 6.7) and hospital admissions (GP, 1.9 ± 1.7 vs. 1.5 ± 1.3), but lower number of visits to SCI-specialists (1.7 ± 1.8 vs. 2.6 ± 1.7) and of hospital days (22.8 ± 43.2 vs. 31.0 ± 42.8). The likelihood to contact a GP first was significantly higher in persons ≥75 years old (OR = 4.44, 95% CI = 1.85-10.69), Italian speakers (OR = 5.06, 95% CI = 2.44-10.47), had incomplete lesions (OR = 2.39, 95% CI = 1.71-3.35), experiencing pain (OR = 1.47, 95% CI = 1.04-2.09) or diabetes mellitus (OR = 1.85, 95% CI = 1.05-3.27), but lower for those situated closer to SCI centres (OR = 0.69, 95% CI = 0.51-0.93) or had higher SCI-SCS scores (OR = 0.92, 95% CI = 0.86-0.99). CONCLUSION: Age, language region, travel distance to SCI centres, lesion completeness, and occurrence of secondary conditions play a significant role in determining the choice of first contact of care, however there is still some unwarranted variation that remains unclear and requires further research.

Who are the beneficiaries and what are the reasons for non-utilization of care respite and support services? A cross-sectional study on family caregivers.

BACKGROUND: Family caregivers assume substantial caregiving responsibilities for persons with chronic conditions, such as individuals with spinal cord injury, which leads to negative impacts on their lives. Respite care and other services are provided as a temporary relief and support for them. Design of appropriate respite care programs depends on identification of beneficiary subgroups for the different types of service. This study aimed to quantify the uptake of different respite and support services for family caregivers, the reasons for non-use, and to explore the respective predictors. METHODS: A cross-sectional survey of family caregivers of persons with spinal cord injury was conducted nationwide in Switzerland. The use of 11 different respite and support services during the previous 12 months was investigated, along with caregivers' reasons for not using any respite. Classification trees were used to characterize the beneficiaries and reasons for not using respite. RESULTS: About a third of family caregivers used at least one type of respite or support service during the previous 12 months. Utilization of respite care was greater among those who employed professional home care (57% vs 24% of those without professional home care). Marked cantonal differences were also observed in utilization of respite care. The primary reason for not using respite services was "no demand" (80% of non-users of respite services), mainly among caregivers who were less emotionally affected by their caregiving tasks. CONCLUSIONS: Utilization of respite and support services depends more on place of residence and use of home care services than on functional status of the care recipient. Accordingly, programs should be tailored to the cultural context of their potential users. This is best achieved through coordination with local health care professionals who can identify needs, provide information, initiate referrals, and integrate the care into a larger support plan.

Professional home care and the objective care burden for family caregivers of persons with spinal cord injury: Cross sectional survey.

Background: Spinal cord injury imposes high demands on family caregivers providing long-term care. Professional home care has been suggested for family caregivers' relief. However, it is not clear whether professional home care can achieve the goal of relieving family caregivers. Objective: To quantify to what extent professional home care was used as a relief or replacement for family caregivers, using the case of care for persons with spinal cord injury in Switzerland. Design: Cross-sectional survey. Setting: Community setting in Switzerland. Participants: 717 family caregivers of persons with spinal cord injury living at home. Methods: Linear regression analyses were applied to investigate the relationship between care hours by family caregivers and the use of professional home care. Percentages of family caregivers that assisted in different tasks, and their time investment in the tasks, were contrasted between those with and without professional home care. Multiple logistic regression compared the likelihood of specific tasks being assisted by family caregivers dependent on whether professional home care was in place. The reasons given for not hiring more professional home care despite unmet needs were described with relative frequencies. Results: Adjusted for non-utilization, care hours of family caregivers had a positive, but insignificant, relationship with the hours of professional home care (Coef. = 0.21, 95% CI: -0.05-0.47). Assistance in activities of daily living was more frequent in family caregivers with professional home care. Eating and drinking assistance was provided by 47% of family caregivers with professional home care (versus 18% of those without professional home care). The most frequent task in instrumental activities of daily living was housekeeping (88% of family caregivers with professional home care and 83% of those without professional home care). After adjusting for characteristics of the caregivers and care recipients, significantly lower odds of assistance were found in washing feet (OR 0.39, 95% CI: 0.22-0.71), transferring to the toilet or bathtub (OR 0.53, 95% CI: 0.29-0.96), and climbing stairs (OR 0.26, 95% CI: 0.09-0.69). Higher odds of assistance were found in respiratory care (OR 2.22, 95% CI: 1.04-4.74) and bladder management (OR 1.99, 95% CI: 1.05-3.76) with professional home care in place. No significant difference was found in other tasks. Conclusion: Professional home care is a strong support to caregivers in high care demand situations, but it is not a replacement. The present study recommends further relief, empowerment, and acknowledgement for family caregivers.What is already known about the topic?• Evidence has shown that family caregivers replace paid domestic help or postpone the use of professional home care in the elderly population.• The large involvement translates into highly stressed family caregivers, for whom professional home care could serve as a relief.• Family caregivers reported low utilization of professional home care and some frustration with its use.What this paper adds• Family caregivers' time investment and involvement in tasks were adjusted based on the care demand of the care recipients.• Despite the presence of professional home care, family caregivers still invested a considerable amount of time and were heavily involved in activities of daily living.• Professional home care provided strong support for family caregivers in instances of higher care demand.

Satisfaction with access and quality of healthcare services for people with spinal cord injury living in the community.

Objective: To identify barriers to access healthcare services and reveal determinants of satisfaction with healthcare services in people with chronic spinal cord injury (SCI).Design: Cross-sectional survey.Setting: Community setting in Switzerland.Participants: People with chronic SCI.Interventions: Non-applicable.Outcome Measures: Questionnaire-based evaluation of availability and quality of healthcare services for secondary health conditions, satisfaction with fulfillment of healthcare needs, and preference for care from a hypothetical service provider with limited specialized SCI care expertise but in close proximity over comprehensive care from an existing specialized SCI center located at a greater distance.Results: Close to three-quarter of participants (70%) indicated satisfaction with healthcare services received for SCI related health conditions. Elderly individuals (61+ years old) rated the availability and quality of healthcare 6% to 11% higher than younger individuals. The perceived fulfillment of healthcare needs was lower in people with incomplete paraplegia (odds ratio (OR) 2.11, 95%-credibility interval (CI) 1.18-3.84), chronic pain (OR 1.85, CI 1.12-3.08), insufficient access to long distance transportation (OR 5.81, CI 2.74-12.82), and longer travel distances to specialized SCI centers.Conclusion: Perceived inadequateness of access to healthcare services was partly related to transportation barriers, suggesting that outreach services or support with transportation are possible solutions. People with incomplete paralysis and pain consistently rated the fulfillment of care needs associated with SCI less favorably, pointing to the need for enhanced advocacy for this vulnerable groups.

What influences the use of professional home care for individuals with spinal cord injury? A cross-sectional study on family caregivers.

STUDY DESIGN: Cross-sectional survey. OBJECTIVE: The objective of this study is to identify what characteristics of the family caregivers influenced the use of professional home care for persons with SCI in Switzerland. SETTING: Community setting, nationwide in Switzerland. METHODS: Questionnaires were filled out by the adult family caregivers of persons with SCI. Influence of characteristics of the caregivers was analyzed with regression models, adjusting for the characteristics of the person with SCI. Logistic regression was used for whether professional home care was used. Poisson regression was applied for the absolute and relative amount of professional home care. RESULTS: In total, 717 family caregivers participated in the study (31% response rate). Among the participants, 33% hired professional home care for 10 h per week on average. The level of dependency of the persons with SCI had a significant influence on the utilization of care. The availability and proximity of the primary family caregiver, namely being spouse and cohabiting, reduced the amount of services used, whereas caregivers who worked full time employed more services. Higher levels of education and income increased the use of professional home care. Compared with their reference groups, caregivers with older age and those with a migratory background used comparable or larger absolute amount of professional services, which, however, represented a smaller proportion of total hours of care. CONCLUSIONS: Adequate support requires consideration of the characteristics of both the caregiver and of the person with SCI. The needs of family caregivers should also be assessed systematically in the needs assessment.