Socio-demographic characteristics of study participants
The survey was conducted among 12 588 participants, as three participants had to be deleted from the study after a data quality check. The response rates were only available for countries with predefined sample frames and are the following: South Africa 54%, Norway 42%, Switzerland 39%, Netherlands 33%, Germany 32%, Poland 32%, Australia 27%, China 23%.14 The sample was predominantly male (73%), with an average age of 51 years, mostly without migrant background (91%) and living with others (77%). The majority of the participants had paraplegia (61%) for 13 years on average with incomplete lesion (60%) and traumatic etiology (80%) (Table 2).
The healthcare providers with highest share of visits in the last 12 months were primary care physician (share of 18% among all healthcare providers) and physical and rehabilitation medicine (PRM)/SCI physician (16%), followed by other specialist physicians (11%) and physiotherapist (13%) (Table 1). The chiropractor had the smallest share (1%) among the 12 providers. Across all countries, 26% of patients visited only one healthcare provider. Two, three, four, five, six or seven providers were visited by 13%, 13%, 12%, 11%, 9% and 6% of individuals, respectively. Less than 5% visited eight or more providers. 34% did not visit any healthcare provider in the last 12 months. More than half of respondent (54%) did not have any inpatient stays in the last 12 months. 19% had one stay, 9% had two and another 9% had three or more stays.
Healthcare utilization cluster characteristics
Nine service utilization clusters were identified with unsupervised cluster analysis (Table 1). Cluster 4 (China) had the lowest service visits across many services, while Cluster 7 (Brazil) featured the highest and most diverse use of services.
Cluster 1 (Australia, South Africa, USA): System with many visits and almost equal reliance on primary and specialized care. General practitioner (GP) services were used slightly more than PRM physician/SCI specialist services. Home workers, chiropractors, or occupational therapists were frequently visited. Inpatient stays were slightly higher than the overall average.
Cluster 2 (Japan, South Korea): System with a strong reliance on SCI specialized outpatient care. Countries with bigger share of visits to a PRM physician/SCI specialist (23%), and to other specialized physicians (14%) than to a GP (9%). Dentists were slightly more visited compared to other clusters (9%), while visits to psychologists were among the lowest (1%). A majority (52%) of patients in this cluster had no inpatient stays.
Cluster 3 (Switzerland, Germany, Lithuania, Norway, The Netherlands): Primary care-oriented system with almost equal use of specialized services. This cluster had the second highest share of GP visits (22%) after Cluster 6 (Indonesia, Poland) (26%). The use of PRM physician/SCI specialist services (9%) was lower than use of GPs (22%), yet other specialist physicians were often visited (12%). Percentage of dentist visits was the highest among all clusters (15%), while the use of nursing services was the lowest (4%).
Cluster 4 (China): System with low healthcare service utilization and reliance mostly on SCI specialized outpatient care, with some consideration of complementary and alternative medicine. This cluster had the largest percentage of those that indicated not visiting any healthcare provider (34%). Similar to Cluster 2 (Japan, South Korea), this cluster had an almost twice as large share of visits to a SCI specialist (23%) than to a GP (12%). It had low attendance across multiple services: dentist (1%), home healthcare worker (0%), psychologist (0%) and occupational therapist (0%). On the other hand, the share of visits to chiropractor (3%) and alternative medicine specialist (3%) was the largest among all clusters.
Cluster 5 (France, Greece, Italy, Morocco, Spain): System with similar use of primary and specialized services and moderate number of inpatient stays. The patients in these countries had almost equal (18% vs. 16%) shares of visits to GP and PRM specialists. Attendance of occupational therapist is among the lowest (1%) and pharmacist services (13%) was higher than in other clusters.
Cluster 6 (Indonesia, Poland): Primary care-oriented system with infrequent visits. Among the countries in this cluster, the number of persons with no visits to any healthcare provider (10%) was almost three times higher than the average across all clusters. GP services had the highest share across all clusters (26%), along with the nurse or midwife services (12%). Inpatient stays were similar to the overall cluster average.
Cluster 7 (Brazil): Generally specialized system with frequent visits and hospital stays. This cluster had the lowest percentage of persons without any visit to a healthcare provider (0.3%). The share of visits to the PRM physician was high (19%) and visits to a physiotherapist was the highest among all clusters (19%). Persons in this cluster frequently used diverse services such as an occupational therapist, chiropractor, physiotherapist and psychologist. One third of respondents in this cluster had one hospital stay. The cluster had the lowest percentage of three or more hospital stays among all clusters (4%).
Cluster 8 (Malaysia, Thailand): Inpatient-oriented SCI specialized system. In this cluster the share of SCI specialist visits (28%) was twice as large as those to the GP (11%). Hospitalizations were above the cluster average. Alternative medical specialist services were frequently used (5%) while pharmacist services were the least used among all clusters (6%).
Cluster 9 (Romania): Inpatient-oriented care system with highest number of hospitalizations. This cluster had the lowest number of persons without any hospital stay (23%), almost half of the share less than the cluster with second lowest stays (Cluster 8). The percentage of persons with two (28%) and three or more (30%) hospital stays was almost three times higher than the overall cluster average. The percentage of visits to GP, PRM physician/SCI specialist, and physiotherapist was similar (19%, 17% and 17%). Services of pharmacists (13%) and occupational therapists (7%) were frequently utilized.
Socio-demographic characteristics of the healthcare utilization clusters
The highest percentage of males was in Cluster 6 (Indonesia, Poland) (80%) and 7 (Brazil) (79%). Mean age was the lowest in Cluster 9 (Romania) (38 years) and highest in Cluster 3 (Switzerland, Germany, Lithuania, Norway, The Netherlands) (56 years). The percentage of respondents with an immigrant background was below 1% in most clusters, with larger shares in Cluster 1 (Australia, South Africa, USA) (19%), Cluster 3 (Switzerland, Germany, Lithuania, Norway, The Netherlands) (11%), and Cluster 5 (France, Greece, Italy, Morocco, Spain) (6%). The percentage of participants with tetraplegia was highest in Cluster 2 (Japan, South Korea) (42%), followed by Clusters 7 (Brazil) (40%) and 6 (China) (40%). In other clusters this percentage was between 31% and 38%. Cluster 4 (China) and Cluster 7 (Brazil) had the highest percentage of those with incomplete lesion, 75% and 79% respectively. This percentage was lowest in Cluster 2 (Japan, South Korea) (40%). The percentage of those with nontraumatic etiology was highest (32% and 30%) in Cluster 4 (China) and Cluster 7 (Brazil), and lowest in Cluster 2 (Japan, South Korea) (8%).
Experience with healthcare system
The majority of the responders rated their healthcare experience as good or very good across all countries and all four experience categories: respectful treatment 84%; clear explanations 81%; involvement in decision making 77%; satisfaction with healthcare 65%. A small fraction of responders rated their healthcare experience as bad (respectful treatment 3%; clear explanations 4%; involvement in decision making 4%; satisfaction with healthcare 9%) or very bad (respectful treatment 1%; clear explanations 1%; involvement in decision making 2%; satisfaction with healthcare 3%). In terms of overall experience (PREM score (0-100)) by country, the lowest scores were attained by Morocco (44), followed by South Korea (49), Lithuania (55), China (55), Poland (57) and Italy (57). The highest country experience scores were observed in the USA (78), Spain (77), Brazil (74), Australia (73), Malaysia (72) and Switzerland (71). The average experience score across all healthcare utilization clusters was 64 (Table 2). The highest cluster score was 74 in Cluster 7 (Brazil) and the lowest was 52 in Cluster 2 (Japan, South Korea). There was a wide variability of PREM scores within the clusters: the difference among the individual country's experience scores was 33 points between countries in Cluster 5 (France, Greece, Italy, Morocco, Spain), 16 in Cluster 3 (Switzerland, Germany, Lithuania, Norway, The Netherlands), 13 in cluster 1 (Australia, South Africa, USA), 12 in Cluster 2 (Japan, South Korea), 5 in Cluster 6 (Indonesia, Poland), and 3 in Cluster 8 (Malaysia, Thailand).
Utilization type was associated with patient experience (Figure 1). The associations did not significantly differ when unadjusted (with 12 588 observations) or adjusted (with 11 838 observations) for socio-demographic and SCI lesion characteristics. Persons of age 46-60 years and those older than 76 had PREM score higher by 2.2 and 2.3 than those younger than 30 years, while for persons aged 61-75 years this score was 3.9 points higher. Living with tetraplegia was associated with having 1.2 points lower PREM score than living with paraplegia. Those with incomplete lesion had a 1.6 points higher experience score than those with complete lesion. Other characteristics such as sex, migration background, injury etiology, and time since injury showed no association with PREM score (Supplementary Table 1).