Primary Care Table 1 Access and utilization issues for primary care of adults with SCI

Author Year; Country
Research Design
Total Sample Size



Guilcher et al. 2013;


Retrospective Cohort


Population: Individuals with TSCI admitted to Ontario hospitals between April 2003 and March 2009

Treatment: No treatment

Purpose: To describe patterns of ED visits made by persons with TSCI

Outcome Measures:Visits classified as potentially preventable, low acuity, high acuity.


  1. 752 (17%) of visits were classified as potentially preventable, 33% low acuity, 50% high acuity
  2. Regardless of acuity level, most patients did not see a GP the day of the ED visit


Hagen et al. 2012;


Observational (Survey)


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 general practitioners.

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 GP (p<0.001).

DiPonio et al. 2011;


Cross-sectional survey


Population: 168 emergency medicine (EM) residents

Treatment: No treatment

Purpose:   to assess knowledge and ability of EM residents to accurately diagnose and treat SCI patients.

Outcome Measures: 16-item survey of knowledge of autonomic dysreflexia (AD), urinary tract infection, post-traumatic syrinx, gastrointestinal system, pulmonary disturbances and cardiac complications; emergency medicine utilization by veterans with SCI

  1. EM residents scored on average 47% on overall knowledge
  2. Scores were highest on diagnosis of possible syrinx (90%) and potential consequences of AD (81%)
  3. Greatest knowledge deficits in pulmonary physiology; 6% knew how to clear secretions in patient with high thoracic SCI; 2% knew how to optimize pulmonary mechanics in patients with pneumonia


Guilcher et al. 2010;


Retrospective Cohort

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 GP visits in first year post  discharge:  TSCI 12.3;  NTSCI 14.7 (p = 0.03)
  2. Mean ED visits:  TSCI  1.3;  NTSCI  1.2 (ns)
  3. High utilization (> 30 MD visits/yr) related to older age (³60 years), urban setting and low FIM score.
  4. High ED use related to rural setting, low income and low discharge FIM

Yuen et al. 2010;


Cross-sectional survey


Population: 192 SCI (>40.1% F; mean age: 43.9; mean YPI 12.8 yrs)

Treatment: No treatment.

Purpose:  to exploredental care utilization among adults with SCI

Outcome measures: Oral Health Survey – self-reported barriers in accessing dental care, perceived need for dental care, tooth-brushing habits, and self-rated condition of teeth.

  1. No significant differences in SCI who visited the dentist in the past year compared to general population (65.5% vs. 68.8%, p=.350)
  2. 47.9% (n=92) indicated immediate need for dental treatment
  3. Most common barriers to accessing dental care was high cost (40.1%), physical barriers (22.9%)
  4. No significant difference between paraplegia vs. tetraplegia in utilization of dental services


Munce et al. 2009;


Case series


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. Overall, women had a higher number of physician visits, and men had a higher number of visits to their physiatrist.
  2. 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 physician visits per year.
  3. Younger age (OR=0.19) and direct discharge to chronic care (OR=11.52) were associated with 50 or more specialist visits per year.
  4. Rural living predicted two or more visits to the ED (OR=2.16)

van Loo et al. 2009;




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)



Population: 373 individuals 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 family doctor (FD), 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.
  2. The highest utilization of FD was for pain (86%, p<0.05) and fatigue (84%, p<0.05); The highest Utilization of SIS was for routine rehab follow-up (91%, p<0.05)
  3. FD were more accessible than SIS in all areas, with the exception of physical accessibility of office and equipment.
  4. Satisfaction was rated as 74% for FD and 76% for SIS; there were no significant differences in accessibility or satisfaction across countries. 

Collins et al. 2005;


Observational (Survey)


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

Goetz et al. 2005;




Population: 4432 subjects (3% F); age: 47-69 yrs;

Treatment:targeted dissemination & implementation of neurogenic bowel Clinical Practice Guideline.

Purpose:  to determine whether adherence to clinical guidelines could be improved through a targeted implementation strategy.

Outcome measures: Adherence to CPG before implementation (T1), after publication (T2) and after dissemination and implementation strategies (T3).

  1. Overall adherence to recommendations did not change between T1 and T2
  2. Statistically significant increase in adherence for 3 of 6 recommendations from T2 to T3 (p<0.001)
  3. Publication alone did not alter adherence, targeted implementation increased adherence for 3 of 6 recommendations.

Beatty et al. 2003;


Observational (Survey)


(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

Cox et al. 2001;


Observational (Survey)


Population:54 subjects (22% F); age 19-79 yrs; Injury: tetraplegia 30, paraplegia 24.

Treatment:  No treatment

Purpose:  To assess areas of need

Outcome measures:overall need for specialist multidisciplinary outreach service, most significant barriers to meeting needs, preferred service delivery options; rated on a 5-point scale

  1. 25% indicated high or very-high need for specialist outreach services; 2% saw no need.
  2. Barriers: limited local expert knowledge (81%), inadequate funding (56%), complicated process/service fragmentation (31%).
  3. Preferred service delivery: telephone advice (79%), home visiting (43%).

Bockeneck 1997;


Observational (Survey)


Population: 144 SCI outpatients (no demographic information stated).

Treatment: No treatment.

Purpose:  To survey whether primary care needs of outpatient population with SCI were being met.

Outcome measures:  self-reported survey of primary care services, and whether additional services needed in the area of primary care at a rehabilitation facility.

  1. 50% of SCI outpatients considered their rehabilitation physician as their primary care physician.
  2. Of the SCI patients who had another physician treating general medical problems, 48% were treated by a general practitioner.
  3. 96% of SCI patients reported that their physician’s office was accessible.
  4. 90% of SCI patients reported that they had no difficulty receiving medical care in the community.
  5. 51% of SCI patients reported that they would be interested in obtaining all general medical care at one rehabilitation facility.



Glickman et al. 1996;


Observational (Survey)





Population:139 General Practitioners (GPs) with SCI patients

Treatment:No treatment.

Purpose:  to examine the workload and common problems facing primary care teams in SCI management.

Outcome measures:Mailed survey inquiring about annual number of consultations with the patient regarding any of gastrointestinal, urological and dermatological problems, and the magnitude of pain and spasticity

  1. Average annual consultation rate with: GP in surgery = 4.03 (range = 0 – 52); GP home visit = 4.57 (range = 2 – 26); Other team member in surgery = 0.56 range = 0 – 6); Other team member home visit = 50.94 (range = 0 – 730).
  2. 53.9% of the GPs offered services to change urethral catheters; 15.8% were able to change suprapubic catheters; and 29.5% offered psychological or social counselling.

Francisco et al. 1995;


Observational (Survey)


Population: 54 physiatrists and 50 Physical Medicine and Rehabilitation (PM&R) residents (12 in 1st year, 19 in 2nd year, and 19 in 3rd year)

Treatment: No treatment.

Purpose:  to determine physiatrists’ and PM&R residents’ opinions on the competency, qualification and desire to provide primary care for the disabled.

Outcome measures: 4 page, 11- item questionnaire seeking information about: level of training/experience, certification, type of practice/internship; primary care provision by physiatrists.

  1. Although 53% believe physiatrists are competent to provide primary care, only 40% were willing to assume the role
  2. Only 38% believe that the PM&R residency programs adequately  trains physiatrists in primary care for the disabled
  3. Conditions for which most respondents believed that primary care should be provided by a physiatrist are SCI (60%), and head injury (51%).

Warms 1987;


Observational (Survey)


Population: 59 adults with SCI (8% F); >2 years post-injury; age range 21-60. 29 cervical, 24 thoracic, 6 lumbar or sacral injury. 

Treatment: No treatment.

Purpose: To survey the source and content of health care received by individuals with spinal cord injury and to describe what healthcare services are desired.

Outcome measures: A self-reported survey assessing: source of health care, content of care, and healthcare services desired, but not obtained.

  1. 54.2% reported consulting a rehabilitation medicine physician; 44% consulted a family physician.