Access and Utilization Issues

Access to primary care has been a key health issue in many jurisdictions in recent years. When the media refer to access, they usually mean issues like wait times, geographical distribution and supply of providers; however, for people with spinal cord injuries, there is another layer of access issues. People with SCI encounter four types of barriers to optimal primary care: physical, knowledge-based, attitudinal and systemic (McColl et al. 2009). These barriers affect the simple ability to enter and use the facilities of the practice, and the ability to receive an appropriate standard of care. Whereas access issues may delay and inconvenience patients in the general population, for patients with disabilities, access issues can actually prevent care. This section summarizes the findings of 16 studies that provide information on access and utilization of primary care among adults with SCI.

Author Year; Country
Score
Research Design
Total Sample Size
Methods Outcome
Amsters et al. 2014

Australia

Case-control

Level 3

N=193

Population: 193 participants with traumatic SCI (TSCI), and whose Medicare data could be matched; Age range 19 –72 years (mean 43 years); Time since injury – less than 1 year to 55 years (mean 16 years); Sex: 159 (82%) males and 34 (18%) females. Tetraplegia – 106 (55%); Paraplegia – 87 (45%); AIS A – 83, AIS B – 20, AIS C – 16, AIS D – 74; Forty-two participants (22%) reported that they were able to ambulate without a wheelchair.

Treatment:  No treatment.

Purpose: To compare health care utilization including Emergency Department (ED) use between traumatic and non-traumatic SCI

Outcome Measures: Utilization statistics, level of injury, length of stay in rehabilitation, Functional Independence Measure (FIM), Charlson co-morbidity index, rurality, and socioeconomic status.

1.     A multiple stepwise linear regression found that injury level was the only significant predictor of GP usage (p = 0.005) accounting for 1.6% of the total variance.

2.     There was no significant difference between the participants based on sex, age, time since injury and level of lesion, though the percentage of females whose data could no be matched was higher than expected (p=0.015).

Bell et al. 2017

USA

Level 3

Case-control study

N=243

Population: 243 people hospitalized for SCI from January 1, 2010, to December 31, 2012. Men 158 (65.0); Age (y) 52.0±19.6; Rural residence 87 (35.8); Paraplegia 72 (29.6), Tetraplegia 152 (62.3), Unspecified 19 (7.8).

Treatment: No treatment.

Purpose: To determine if distance affects the number of physician visits.

Outcome Measures: Number of physician/specialty clinic visits.

1.     There were statistically significant differences in physician visits based on a person’s distance from the clinic. Specifically, each 2-fold increase in travel distance between a person and a provider was estimated to decrease the likelihood of using services by 14% (before adjustment – RRZ.86; 95% confidence interval [CI], .77-.95). (after adjustment RRZ.87; 95% CI, .79-.96).
Guilcher et al. 2010

Canada

Retrospective Cohort

Level 3

N=1562

Population: 560 participants with traumatic SCI (TSCI) (24.6% F; mean age 46.9±17.3 yrs.); 1002 participants with non-traumatic SCI (NTSCI), (47.8% F; mean age 61.6±15.8 yrs).

Treatment:  No treatment.

Purpose: To compare health care utilization including Emergency Department (ED) use between traumatic and non-traumatic SCI.

Outcome Measures: Utilization statistics, level of injury, length of stay in rehabilitation, Functional Independence Measure (FIM), Charlson co-morbidity index, rurality, socioeconomic status.

1.     Mean Family Physician/GP visits in first year post-discharge:  TSCI 12.7; NTSCI 14.7 (p = 0.03).

2.   High utilization (> 30 MD visits/yr) related to older age (³60 years), urban setting and low FIM score.

Munce et al. 2009

Canada

Case series

Level 4

N=559

Population: 559 adults with SCI (24% F), > 1 yr after acute care; 62 lumbar, 126 thoracic, 350 cervical, 21 other.

Treatment: No treatment.

Purpose: To examine physician utilization from various Ontario health databases for the years 2003-2006.

Outcome measures: physician utilization, including family physician, specialist, and emergency department visits; Charlson Index (co-morbidity); Rurality Index of Ontario (RIO).

1.   On average women visited their GP/FP 15.37 times one-year post-discharge while men visited 10.33 times.

2.   Overall, women had a higher number of physician visits, and men had a higher number of visits to their physiatrist.

3.   Older age (70+) (Odds Ratio=3.64), direct discharge to chronic care (OR=3.62) and an in-hospital complication (OR=2.34) were associated with 50 or more.

Hamilton et al. 2017

USA

Cross-sectional survey

Level 5

N=142

Population: People with SCI more than 12-months post-injury.

Treatment: No treatment.

Purpose: Determine which types of health care providers patients have visited in the last 12 months, the accessibility of the health care providers, as well as the participants’ satisfaction with the health care providers.

Outcome Measures: 34-item questionnaire, in-person or over the phone.

1.     79% of participants visited a primary care physician in the last 12 months.
Gemperli et al. 2017

Switzerland

Cross-sectional survey

Level 5

N=492

Population: People with traumatic or non-traumatic SCI in national association registries over the age of 16

Treatment: No treatment

Purpose: To determine which health care providers patients have visited in the last 12 months and instances where required health care was not received

Outcome Measures: Survey asking how frequently the patient has visited each of 17 different health care providers (e.g., GP, internist, speech therapist, masseur, etc.)

1.     The primary care physician was the most frequently visited health providers in the last 12 months (88%), followed by dentists (76%) and physiotherapists (72%).

2.     For acute care, the GP was visited most often (46%) and 54% of visits to the PCP were for acute care.

3.     Physiotherapists were the health care provider visited most often in 12 months with an average of 30 visits per participant as compared to the PCP with an average of 5 visits.

Lee et al. 2014

Canada

Mixed methods

Level 5

N=171

Population: Patients with mobility issues (5% of which had SCI) that were assessed and received care from an interprofessional primary care mobility clinic.  Clinic included GP, chiropractor, occupational therapist, nurse, social worker, pharmacist as needed.

Treatment: No treatment.

Purpose: To determine patient satisfaction with the mobility clinic (primary clinic with emphasis on accessibility for patients with mobility issues, and patient-centred care) and the effectiveness of the interprofessional Mobility Clinic in comparison with standard primary care centres.

Outcome Measures: Paper-based survey measuring satisfaction with the interprofessional Mobility Clinic.

1.     171 patients were referred to the mobility clinic, 130 patients visited the mobility clinic, 69 patients had a follow-up visit.

2.     62.5% of patients gave a review of ‘extremely satisfied’ and 37.5% of patients gave a review of ‘very satisfied’.

3.     As a result of the clinic access to health care was reported by participants to be easier when their condition worsens (73.7%), when specialized equipment is needed (82.6%) and when access to allied health professionals is warranted (87.5%).

Ronca et al. 2017

Switzerland

Cross-sectional survey

Level 5

N=492

Population: Swiss citizens with chronic SCI over the age of 16 from late 2011 to early 2013.

Treatment: No treatment.

Purpose: To determine how often SCI patients visit various health care services.

Outcome Measures: Survey determining the percentage of patients that visited various health care services.

1.     GP care were the most used services with 88.4% of participants having visited a GP in the last year with an average of 5.3 ± 8.3 visits compared to 53.1% for outpatient clinics and 35.9% for in-patient hospitals.

2.     46% of participants had an emergency visit to a GP in the last year with an average of 1.4 ± 3.1 visits.

3.     Rates of GP use were 1.3x higher for people with SCI as compared to the general population and higher in rural areas.

Ronca et al. 2018

Switzerland

Cross-sectional survey

Level 5

N=492

Population: Swiss citizens with chronic SCI over the age of 16 from late 2011 to early 2013.

Treatment: No treatment.

Purpose: To determine how satisfied people with SCI are with various health care services.

Outcome Measures: Survey measuring the percentage of participants satisfied with their GP’s service.

1.     55% of participants rate their GP’s service as high or very high in quality.

2.     54% of participants reported that “insufficient access to short-distance transportation” is a major problem.

3.     Participants that reported that they had “insufficient access to short-distance transportation” significantly more often rated GP service as low (43.4%) or very low (29.6%) quality (P < .01).

Stillman et al. 2014

USA

Cross-sectional study

Level 5

N=108

Population: SCI patients who use wheelchairs regularly.

Treatment: No treatment.

Purpose: To determine to what extent physical barriers impair SCI patients’ experience with primary care providers.

Outcome Measures: Survey determining barriers to accessing primary care providers and satisfaction with their experience.

1.     99% had seen their primary care provider in the past year, 85% had > 1 visit with a specialty care provider and 48% visited emergency care.

2.     89.8% of participants reported that they faced physical barriers when visiting a primary care provider vs 83.8 during specialty care visits.

3.     65.7% of participants stated the care provided by a primary care or specialty physician was insufficient.

4.     53.7% of participants reported that they were satisfied or very satisfied with the care of their primary care provider.

Hagen et al. 2012

Norway

Observational (Survey)

Level 5

N=105

Population: Patients with TSCI injured between 1982 and 2001 in western Norway; mean age at injury 37.6 years; time since injury 11.9 years; 80.0% male.

Treatment: No treatment.

Purpose: To examine how satisfied patients with traumatic spinal cord injury are with their primary care physician.

Outcome Measures: Self-report satisfaction on the following domains: availability, understandable, easy to ask, understand, knowledge, overall satisfaction.

1.     Individuals with incomplete injuries were less satisfied than those with complete injuries (p=0.015).

2.     Patients with traumatic spinal cord injury were more satisfied than the general Norwegian population with their primary care physician (p<0.001).

van Loo et al. 2009

Netherlands

Observational

(Survey)

Level 5

N = 453

Population: Mean age 47.7; (34.9% F); Complete tetraplegia 19.9%, Incomplete tetraplegia 14.4%, Complete paraplegia 46.3%, Incomplete paraplegia 19.4%.

Treatment: No treatment.

Purpose:   To determine the care received for secondary conditions and extra care needs, and to determine if the secondary conditions were preventable.

Outcome measures: Questionnaire on frequency of SCI-related contacts with professional, secondary conditions and conditions perceived as most important, care received, and how condition could have been prevented.

1.   77% had SCI-related contact with their general physician, 57% with a physiatrist, 65% with another specialist.

2.   72% indicated need for additional care due to secondary conditions.

3.   For most important secondary conditions, 47% received care, and extra care in 41.3%.

4.   Patients preferred to receive follow-up care from specialists rather than community care.

Donnelly et al. 2007

Canada, US, & UK

Observational (Survey)

Level 5

N=373

Population: 373 people with SCI (15% F); 127 Canadian, 162 British, 84 American; avg age 58, avg duration SCI 34 yrs.

Treatment: No treatment.

Purpose:   To describe utilization, accessibility, and satisfaction with primary and preventative health care services by individuals with long term SCI; to compare results across three countries: Canada, US, and UK.

Outcome measures: 46-item measure [compilation of Health Care Questionnaire (HCQ) and Patient Satisfaction with Health Care Provider Scale (PSHCPS)] of utilization, access, and satisfaction with primary and preventative health care services.

1.   93% had a primary care physician, 63% had a spinal injury specialist (SIS), 56% had both, 36% had only a FD, 6% had only a SIS, and 1% had no doctor at all. Canadians most likely to have received care from FD and Americans from specialists. Access to and satisfaction with health services was not significantly different among countries.

2.   FD were more accessible than SIS in all areas with the exception of physical accessibility of office and equipment.

3.   Satisfaction was rated as 74% for FD and 76% for SIS; there were no significant differences in accessibility or satisfaction across countries.

Lofters et al. 2018

Canada

Retrospective chart review and Cross-sectional Survey

Level 5

N=125

Population: 60 patients included in the chart review and 15 physicians in the survey from 6 interprofessional primary care practices in Ontario.

Purpose: To determine the preventative care methods physicians use as well as determining physicians’ comfort level in dealing with patients with SCI.

Treatment: No treatment.

Outcome Measures: Survey measuring physicians’ comfort level dealing with SCI patients.

1.     66.6% of physicians had a patient with SCI, one physician had 20 patients with SCI.

2.     Rates of cancer screening were poor with 50% of eligible woman with SCI having up-to-date Pap tests and 36.7% up to date on CRC screening.  Only 23.3% had a general physical in their record and 40% had a BMD test recorded.

Collins et al. 2005

USA

Observational (Survey)

Level 5

N=853

Population: 853 veterans with SCI.

Treatment: No treatment.

Purpose:  To assess patient satisfaction with the annual comprehensive preventative health evaluation (CPHE).

Outcome measures: 21 item questionnaire about satisfaction with CPHE:  content, whether needs were met, what respondents valued about the examination and health concerns they would like to see addressed.

1.   76% of survey respondents had completed the CPHE within the previous year.

2.   Satisfaction with the CPHE was 81%.

Completion of CPHE was related to other health care utilization and having health needs met.

Beatty et al. 2003

USA

Observational (Survey)

Level 5

N=800

(169 SCI)

Population: 800 adults ≥18 years (69% F) with either arthritis (357), SCI (169), MS (164), or CP (110).

Treatment: No treatment.

Purpose:  To survey patterns of need for and access to specific health care services; factors predicting access.

Outcome measures: 80 item self-report questionnaire on perceived need for and access to:  primary care physician (PCP); specialist care (SC); physical rehabilitation (PR); assistive equipment (AE); and prescription medications (PM).

1.     Overall need for health services varied; 62.7% reported a need for PCP, 57.4% for SC, 39.1% for PR, 69.2% for AE, & 94.1% for PM.

2.   Need Vs. actual receipt of services: 67% of needed PCP was received; 75.3% of SC; 40.9% of PR; 69.2% of AE; and 93.1% of PM.

3.   Factors affecting access: Health plan type [fee for service or managed care organization]; Condition; Health status; Severity; Coverage; Income; Age.

4.   No differences were found across gender and region of residence.

Discussion

Donnelly et al. (2007) and Bockenek (1997) agree that most people with spinal cord injuries (approximately 90%) have access to primary care; that is, they identify a family physician who is their regular doctor. These results came from surveys of people with long-standing spinal cord injuries in the US, Canada and Great Britain.

In a Dutch sample, van Loo et al. (2009) found that 77% of their community-dwelling sample with spinal cord injuries of average 13 years duration had contacted their family physician in the past year for an issue related to their disability. Glickman et al. (1996), in a survey of primary care providers in England, found that on average, patients with SCI attended their clinics 4 times per year, with an additional 4.5 home visits made by the family doctor, and as many as 51 home visits made by other members of the health care team working out of the primary care setting. This finding highlights the extensive network of community rehabilitation available in the UK. Munce et al. (2009), focusing on the Canadian context, found that women with SCI tend to make more visits to their family physician than men; however, very high utilization of primary care (more than 50 visits per year) was related to being over 70 years of age, having significant complications, and living in a chronic care facility.

Bockenek (1997) surveyed patients attending outpatient clinics in the US, and found that 50% considered their physiatrist as their family physician, and were happy to receive their primary care at the rehabilitation centre. Warms (1987) also found that more than half of community-dwelling adults with SCI in the US received primary care from their physiatrist. In a survey of physiatrists treating patients with spinal cord injuries, Francisco et al. (1995) found that only 40% of physiatrists were willing to assume this role, and 53% believed that physiatrists were competent to fulfill this role. Only 38% felt that their residency training had adequately equipped them to provide primary care.

Donnelly et al. (2007) found that 63% of their international sample had a spinal cord injury specialist or physiatrist; 56% had both SCI specialist and family doctor, and only 1% had neither. Beatty et al. (2003) found that 57% of those surveyed with an SCI reported a need for specialist care, but 25% had unmet needs. With regard to specialist visits, Munce et al. (2009) found that Canadians with SCI were most likely to be high users of specialist services if they were younger and if they lived in chronic care. Both Bockenek (1997) and van Loo et al. (2009) found that patients preferred specialist care, and were most happy to receive their follow-up care from rehabilitation specialists rather than community care.

Donnelly et al. (2007) show that people with long-term spinal cord injuries develop complex rubrics for navigating their personal health care systems. There is considerable confusion about which issues are most appropriate to bring to the family physician versus the physiatrist, and there are significant international differences in who does what. Beatty et al. (2003) surveyed adults with a variety of disabilities in the US, and found that about 63% of those with SCI indicated a need for primary care, while 33% reported an unmet need for primary care (meaning a self-report of service needed but not received). A troubling finding of the same study was that unmet needs were greatest among those with the poorest health and lowest incomes. van Loo et al. (2009) reported that 72% of their sample reported unmet needs, particularly related to rehabilitation consultation, telephone consults and home visits.

The most prevalent impediment to accessible primary care is the need for specialized expertise. In Australia, Cox et al. (2001) found that 81% of people living in the community with SCI reported limited local provider expertise, and 25% indicated a high need for specialist outreach services. Goetz et al. (2005) showed that clinical guidelines for specialized primary care can improve outcomes for people with SCI, but adherence to guidelines does not necessarily follow publication. Implementation strategies, such as improved documentation forms and procedural flowsheets, significantly increased adherence and promoted improved care.

Donnelly et al. (2007) noted that physical accessibility of the office and equipment could be an issue in primary care. These results came from surveys of people with long-standing spinal cord injuries in the US, Canada and Great Britain. Munce et al. (2009) noted that geography might be an impediment to access, since emergency room visits were twice as common for those living in rural areas. Often in rural areas, family physicians provide the medical service in emergency rooms after hours, and the central location of the emergency department in a rural community may provide easier access for patients. Cox et al. (2001) found that home visits and telephone consultations were preferred methods for increasing accessibility to primary care.

According to Donnelly et al. (2007) satisfaction was high (~75%) with quality and accessibility of care for both family physicians and rehabilitation specialists. One program where satisfaction was particularly high was the annual Comprehensive Preventive Health Evaluation (CPHE; Collins et al. 2005). In a large sample of American veterans with SCI, compliance with CPHE was related to having health needs and issues successfully addressed. van Loo et al. (2009) found that 23% of visits to family physicians in their sample were to obtain annual follow-up.

Guilcher et al. (2010) add to information about primary care utilization in Canada, showing that in the first year following discharge from rehabilitation, people with non-traumatic SCI made statistically more visits to the family physician than those with traumatic SCI. There was, however, no difference in use of emergency departments between traumatic and non-traumatic injuries. Highest primary care utilization was related to older age, living in an urban area, and greater functional limitation. This study is consistent with findings by Munce et al. (2009) that higher emergency room utilization was related to living in a rural area.

DiPonio and colleagues (2011) confirmed earlier findings that limited provider knowledge about SCI was a significant barrier to access. In a survey of emergency room medical residents, they found knowledge generally poor (47%) for six potentially life-threatening situations that might bring someone with a spinal cord injury to the emergency department.

One article evaluated access to dental services (Yuen et al. 2010). These authors showed that people with SCI use dental care at the same rate as the general population. The greatest impediments to access were physical barriers and cost, especially for those without insurance.

In this most recent update, two articles were added to access and care, with Hagen et al. (2012) finding that individuals with complete injuries were more satisfied with their GP than those with incomplete injuries. Guilcher et al. (2013) found that approximately 50% of emergency department visits among those with SCI were either ‘potentially preventable’ or ‘low acuity’, suggesting that there is considerable over reliance of the ED among this population.

Conclusions

There is level 4 evidence that individuals with tSCI are using the ED for conditions that could be managed in primary care approximately half of the time (Guilcher et al. 2013)

There is level 4 evidence that GP utilization is related to older age, functional disability, and complications (Munce et al. 2009; Guilcher et al. 2010)

There is level 4 evidence that individuals living in rural areas are more likely to visit the Emergency Department than those living in cities (Munce et al. 2009; Guilcher et al. 2010).

There is level 4 evidence that adherence to clinical guidelines improves with targeted implementation plans (Goetz et al. 2005).

There is level 5 evidence that individuals with incomplete injuries are less satisfied with their GP than those with complete injuries (Hagen et al. 2012).

There is level 5 evidence that factors predicting access to health services include health plan type, health condition, health status, severity of condition, income level and age (Beatty et al. 2003).

There is level 5 evidence that an annual Comprehensive Preventive Health Evaluation at the SCI centre is related to improved health care utilization and having health, psychosocial, and equipment needs met (Collins et al. 2005).

There is level 5 evidence that a minority of physiatrists are willing or capable of providing primary care to those with disabilities (Francisco et al. 1995).

There is level 5 evidence that there is considerable duplication between primary care and physiatry, despite high satisfaction with both (Donnelly et al. 2007).

There is level 5 evidence that there are significant differences in service utilization between Canadians, Americans, and Britons, but no difference in access to and satisfaction with the services (Donnelly et al. 2007).

There is level 5 evidence that limited knowledge of SCI, lack of funding, and service fragmentation are barriers to primary care (Cox et al. 2001; DiPonio et al. 2011)

There is level 5 evidence that people with spinal cord injuries use dental care at approximately the same rate as the general population (Yuen et al. 2010).