Primary care of people with spinal cord injury: Scoping review

Mary Ann McColl; Alice Aiken; Alexander McColl; Brodie Sakakibara; Karen Smith

Article Figures & Data

Tables

View popup

Table 1

Summary of the 21 articles included in the scoping review of primary care and SCI

STUDY DETAILS	METHODS	OUTCOME
Ashe et al,¹⁶2009; Canada; D&B score^* = 11; survey; N = 22	Population: 22 physiatrists treating patients with SCI Treatment: None Purpose: To assess opinions about bone health and treatments among physiatrists Outcome measures: A survey assessing opinions and practice patterns relating to bone health after SCI	86% of physiatrists considered bone health after SCI to be an important issue Most physiatrists reported that pharmacologic treatments were most beneficial, whereas rehabilitation modalities had lower support for effectiveness
Munce et al,¹⁷ 2009; Canada; D&B score = 12; observational; N = 559	Population: 559 adult (136 female) patients with SCI, > 1 y after discharge from acute care Treatment: None Purpose: To examine physician use from various Ontario health databases for the years 2003 to 2006 Outcome measures: Physician use, including FP, specialist, and ED; Charlson index (comorbidity) and Rurality Index for Ontario	Women had a higher number of FP visits; men had a higher number of specialist visits (physiatrist) Older (≥ 70 y) age (OR = 3.64), discharge to chronic care (OR = 3.62), and in-hospital complications (OR = 2.34) associated with > 50 visits/y Younger age (OR = 0.19) and direct discharge to chronic care (OR = 11.52) were associated with ≥ 50 specialist visits/y Rurality Index for Ontario results predicted ≥ 2 visits to the ED (OR = 2.16)
Van Loo et al,¹⁸ 2010; Netherlands; D&B score = 12; survey; N = 453	Population: 453 adults with SCI; average 13 y after injury Treatment: None Purpose: To determine care and needs related to secondary conditions, and to determine if the secondary conditions were preventable Outcome measures: Questionnaire on frequency of SCI-related contacts with health professionals in past year, secondary conditions, and how the condition could have been prevented	77% had SCI-related contact with their general physicians, 57% with physiatrists, and 65% with other specialists On average, participants mentioned 8 secondary conditions, including bladder and bowel regulation, pain, spasms, sexual problems, and pressure sores 50% of the pressure sores and 25% of the bladder, bowel, and sexual problems could have been prevented according to the participants 72% indicated the need for additional care of secondary conditions
Bloemen-Vrencken et al,¹⁹ 2007; Netherlands; D&B score = 15; prospective controlled study; N = 62	Population: 62 adults with SCI in first year after discharge (31 experimental and 31 control subjects) Purpose: To evaluate nurse-led outreach from rehabilitation to primary care Treatment: Transmural care (nurse as a liaison between patient, primary care, and rehabilitation centre) in addition to usual follow-up care Control: Usual follow-up including periodic outpatient visits to rehabilitation centre Outcome measures: Prevalence of pressure sores and urinary tract infections; number and duration of readmissions to hospital and rehabilitation centres owing to pressure sores or bladder and bowel problems in the first year after discharge	No significant difference seen in prevalence of pressure sores and urinary tract infections between groups No significant differences seen in readmission rates between groups Quality of follow-up care experienced not significantly different between groups
Booth and Kendall,²⁰ 2007; Australia; D&B score = 9; observational; N = 40	Population: 40 adults with new SCI discharged to non-metropolitan areas Purpose: To evaluate effectiveness of TR for people with SCI in rural Australia Treatment: Home-based TR program; multidisciplinary team allowed completion of rehabilitation in real-world environment Outcome measures: Benefits and challenges of TR programs	Extra time and resources allowed TR staff to coordinate with LCPs, increase family involvement, enhance social and community supports, and ensure availability of specialist support for equipment, mobility, and adjustment problems
Donnelly et al,²¹ 2007; Canada, United States, and United Kingdom; D&B score = 10; survey; N = 373	Population: 373 individuals with SCI, average 36 y after injury Treatment: None Purpose: To describe use, accessibility, and satisfaction with primary and preventive health care services; to compare across Canada, United States, and United Kingdom Outcome measures: HCQ, PSHCPS	93% had FPs, 63% had SISs, and 56% had both; 36% had only FPs, 6% had only SISs, and 1% had no doctor at all Issues of sexual health, alcohol use, community functioning, and emotional health were not addressed for > 70% of participants The highest use of FPs was for pain (86%, P < .05) and fatigue (84%, P < .05); the highest use of SISs was for routine rehabilitation follow-up (91%, P < .05) FPs showed problems with physical accessibility of office and equipment Satisfaction was rated as 74% for FPs and 76% for SISs
Gontkovsky et al,²² 2007; United States; D&B score = 12; survey; N = 82	Population: 82 patients with SCI, average 7 y after injury; mean (SD) age 42 (14) y Treatment: None Purpose: To examine the perceived information needs of individuals with chronic SCI and determine the factors that influence these needs Outcome measures: Questionnaire on access to health information since inpatient discharge (23 domains)	Information needed on aging (73%) and SCI research (66%) ≥ 16% of the sample reported information needs in each of the 23 domains Ethnic minority participants endorsed considerably more information needs
Collins et al,²³ 2005; United States; D&B score = 16; survey; N = 853	Population: 853 veterans with SCI; mean age 59 y Treatment: None Purpose: To assess patient satisfaction with the annual CPHE Outcome: Survey of satisfaction with CPHE, whether needs were met, what respondents valued about the examination, and health concerns they would like to see addressed	76% of respondents had completed CPHEs within the previous year Main reason was to get medication and supplies refilled and to talk to doctors Topics discussed during the CPHE were muscle strength and weakness, bladder care, chronic pain, digestion and bowel care issues, and equipment problems Satisfaction with the CPHE was 81% Completion of the CPHE was related to other health care use and having health needs met
Goetz et al,²⁴ 2005; United States; D&B score = 13; posttest; N = 4432	Population: 4432 veterans with SCI; mean age 54 y Purpose: To evaluate effect of CPG on bowel care Treatment: CPG for management of neurogenic bowel; implementation strategies included practice tools such as reporting forms and flow sheets Outcome measures: Adherence measured before implementation (T1), after publication (T2), and after targeted dissemination and implementation strategies (T3)	Overall adherence to recommendations did not change between T1 and T2 Statistically significant increase in adherence for 3 of 6 recommendations from T2 to T3 (P < .001) Publication alone did not alter adherence; targeted implementation increased adherence
McDermott et al,²⁵ 2005; United States; D&B score = 15; observational; N = 35 SCI patients	Population: 35 adults with SCI, mean age 35y; total sample 3636 (1552 with disability, 2084 controls) Treatment: None Purpose: To determine rate of depression among individuals with disabilities Outcome measures: Review of computerized medical records from 1990 to 2003 and companion paper records	Patients with disabilities have significantly higher rates of depression (P = .019) 28.6% of people with SCI were found to be depressed Trauma (SCI and TBI) related to significantly earlier onset of depression compared with controls (P = .0007) By age 50 y, 16% to 17% of patients with trauma had depression; by age 60 y, 45% of trauma patients had depression, compared with 18% of controls
Williams,²⁶ 2005; United Kingdom; D&B score = 4; survey; N = 31	Population: 31 adults with SCI seen at a community clinic Purpose: To evaluate the effectiveness of follow-up clinics to promote improved health information Treatment: Nurse-led clinic; holistic nursing assessment and peer support Outcome measures: Effectiveness of nurse-led services	Participants reported benefits from nurses’ up-to-date knowledge of specific bowel or bladder problem-solving approaches Participants perceived nurses to be more understanding and better informed; found sessions informative, practical, and helpful
Prabhaka and Thakker,²⁷ 2004; India; D&B score = 8; posttest; N = 546	Population: 546 adults with SCI living in communities across India Purpose: To evaluate the effects of long-distance home visiting as an alternative to clinical follow-up for rural areas Treatment: A home visit program with an outreach team (counselor, surgeon, physiotherapist, occupational therapist, prosthetist, orthotist, social worker, nurse); aim to decrease the rate of hospital readmissions Outcome measures: Complete assessment including bladder and bowel function, sexual rehabilitation, problems faced by SCI patients and family, social relations, available support, and opportunities for vocational rehabilitation	Home visit program decreased the number of readmissions, improved status of rehabilitation, and raised quality of care for patients
Beatty et al,²⁸ 2003; United States; D&B score = 14; survey; N = 800 (169 with SCI)	Population: 169 adults with SCI; total sample 800 Treatment: None Purpose: To survey patterns of need and access to specific health care services, and factors identified as predictors of access Outcome measure: 80-item self-report questionnaire on perceived need for and access to PCP, SC, PR, AE, PM; analyzed by health plan (fee-for-service and managed care)	Overall need for health services: 62.7% reported a need for PCP, 57.4% for SC, 39.1% for PR, 69.2% for AE, and 94.1% for PM Need vs actual receipt of services: Only 67% of needed PCP care was received, 75.3% of SC, 40.9% of PR, 69.2% of AE, and 93.1% of PM Factors affecting access: health plan type, condition, health status, severity, coverage, income, age. No differences were found across sex and region of residence
Beck and Scroggins,²⁹ 2001; United States; D&B score = 6; posttest; N = 19	Population: 3 adults with quadriplegia and 16 long-term health care providers Purpose: To evaluate an interdisciplinary education and support program Treatment: Health Maintenance Education Program including interdisciplinary workshop, collaborative home visit for individualized assessment, education and intervention, ongoing support Outcome measures: Program evaluation forms	Significant increase in knowledge of prevention of respiratory complications (P < .05), prevention and treatment of autonomic dysreflexia (P < .05), prevention of spasticity (P < .01), reportable symptoms (P < .01), effects of aging (P < .001), availability of community resources (P < .01)
Vaidyanathan et al,³⁰ 2001; United Kingdom; D&B score = 10; survey; N = 128	Population: 128 SCI patients attending regional follow-up clinic Treatment: None Purpose: To assess need for information about changes in condition; to assess potential for information to cause anxiety to patients, relatives, or caregivers Outcome measures: 28-item survey	83% of patients wished to receive written information following clinic visits 93% wished for information about changes in their medical conditions after readmission to the spinal unit 90% wanted copies of MRI results with interpretation and wanted them shared with their GPs 95% thought that written information would not cause needless anxiety
Cox et al,³¹ 2001; Australia; D&B score = 9; survey; N = 54	Population: 54 adults with SCI, mean age 39 y Treatment: None Purpose: To assess the nature and extent of unmet health needs Outcome measures: Telephone survey of need for specialist multidisciplinary outreach service, most important barriers to meeting needs, preferred service delivery options	25% indicated high or very-high need for specialist outreach services Barriers to meeting health needs included limited local expert knowledge (81%), inadequate funding (56%), complicated process or service fragmentation (31%) Preferred mode of service delivery: telephone advice (79%) or home visiting (43%)
Oshima et al,³² 1998; United States; D&B score = 9; survey; N = 44	Population: 30 IM and 14 ObGyn residents Purpose: To assess knowledge and comfort of medical residents to provide sexual and reproductive care to patients with SCI Treatment: None Outcome measures: Students were asked how they would treat a hypothetical case of a pregnant woman with quadriplegia; questions addressed conducting an examination, dealing with spasticity, transferring the patient to the examination table, self-rating of comfort level in managing the patient	75% of IM and 67% of ObGyn residents would conduct a pelvic examination 53% of IM and 64% of ObGyn residents would ask staff to lift the patient on the table; 21% of ObGyn residents reported access to an elevating table 40% of IM residents said they did not have the necessary resources or knowledge 17% of IM and 14% of ObGyn residents did not know how to manage spasticity; 36% expressed concern about spasticity 43% would refer to physiatry Most reported comfort level as neutral to uncomfortable
Bockeneck,³³ 1997; United States; D&B score = 8; survey; N = 144	Population: 144 SCI outpatients Treatment: None Purpose: To survey if primary care needs of outpatients with SCI were met Outcome measures: Self-reported survey assessing the ability of the local community to provide primary care services, and to determine whether additional services were needed from a rehabilitation facility	50% of SCI outpatients considered their rehabilitation physician to be their PCP 48% had general medical problems treated by GPs 96% of SCI patients reported that their physicians’ offices were accessible 90% had no difficulty receiving medical care in the community 51% of SCI patients preferred obtaining all medical care at a rehabilitation facility
Glickman et al,³⁴ 1996; England; survey; D&B score = 6; N = 139	Population: 139 GPs with SCI patients Treatment: None 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; prevalence of gastrointestinal, urologic, and dermatologic problems, pain, and spasticity	Average annual consultation rate with GP in surgery = 4.03; GP home visit = 4.57; other team member in surgery = 0.56; other team member home visit = 50.94 78.5% of SCI patients had multiple current health problems; 11.5% had 0 problems; 10.1% had 1 problem 72% had urologic problems; 49.6% had bowel issues; 41.7% had skin problems; 65.5% had spasticity; 55.4% had pain 29.5% were offered psychological or social counseling
Francisco et al,³⁵ 1995; United States; D&B score = 11; survey; N = 104	Population: 54 physiatrists and 50 physiatry residents Treatment: None Purpose: To determine physiatrists’ and residents’ opinions on their competency, qualification, and desire to provide primary care for patients Outcome: Self-report questionnaire on level of training regarding primary care provision by physiatrists; reasons why or why not to provide primary care; disabled patients that should receive primary care by physiatrists	53% believed physiatrists were competent to provide primary care; only 40% were willing to assume the role 38% believed that physical medicine and rehabilitation residency programs adequately trained physiatrists in primary care Conditions for which most respondents believed that primary care should be provided by physiatrists were SCI (60%) and brain injury (51%)
Warms,³⁶ 1987; United States; D&B score = 9; survey; N = 59	Population: 59 adults with SCI, at least 2 y after injury; age 21 to 60 y Treatment: None Purpose: To survey health care received by individuals with SCI and to describe what health care services are desired Outcome measures: A self-reported survey assessing source of health care, content of care, and health care services desired but not obtained	54.2% reported consulting rehabilitation medicine physicians in the past year; 44% consulted FPs in the past year 80% of issues raised were related to disability 52.9% discussed bladder or kidney problems, 47.1% discussed pressure sore prevention, 23% reported spasticity, and 23% discussed bowel issues Unmet needs were reported for health promotion, fitness, and diet

AE—assistive equipment, CPG—clinical practice guideline, CPHE—comprehensive preventive health evaluation, ED—emergency department, HCQ—Health Care Questionnaire, IM—internal medicine, LCP—local care provider, MRI—magnetic resonance imaging, ObGyn—obstetrics and gynecology, OR—odds ratio, PCP—primary care physician, PM—prescription medications, PR—physical rehabilitation, PSHCPS—Patient Satisfaction with Health Care Provider Scale, SC—specialist care, SCI—spinal cord injury, SIS—spinal injury specialist, TBI—traumatic brain injury, TR—transitional rehabilitation.
↵* Methodologic rigour score, evaluated on a scale from 1 to 20, with higher scores corresponding with higher levels of methodologic rigour; Downs and Black, 1998.³⁷

View popup

Table 2

Summary of the evidence from selected studies of primary care and SCI

FINDING^*	REFERENCE	D&B SCORE^†	N
There is level 2 evidence that ...
• An outreach program (transmural care—nurse liaison from rehabilitation to primary care) does not appear to be effective in reducing pressure sores, urinary tract infections, or hospital readmission rates	Bloemen-Vrencken et al,¹⁹ 2007	15	62
There is level 3 evidence that ...
• Depression rates are higher and onset is earlier among individuals with disabilities, especially traumatic-onset disabilities, such as SCI, compared with controls	McDermott et al,²⁵ 2005	15	35
There is level 4 evidence that ...
• An annual comprehensive preventive health evaluation conducted at the SCI centre is related to improved health care use and having health, psychosocial, and equipment needs met	Collins et al,²³ 2005	16	853
• Clinician adherence to bowel and bladder guidelines improves with a targeted implementation plan	Goetz et al,²⁴ 2005	13	4432
• GP use is related to older age, complications, and chronic care living; individuals living in more rural areas are twice as likely to visit the ED as those living in cities	Munce et al,¹⁷ 2009	12	559
• Outreach in the form of home visits from a multidisciplinary team from a rehabilitation centre led to fewer readmissions and improved rehabilitation outcomes	Prabhaka and Thakker,²⁷ 2004	8	546
• A multidisciplinary Health Maintenance Education Program improves patient satisfaction with primary care and increases knowledge of respiratory complications, autonomic hyperreflexia, spasticity, aging, and community resources	Beck and Scroggins,²⁹ 2001	6	19
• A specialized nurse-led community clinic provided up-to-date and readily applicable knowledge about bowel and bladder issues and skin breakdown, and was preferred over a medical clinic	Williams,²⁶ 2005	4	31
There is level 5 evidence that ...
• Half of those with a perceived need for physical rehabilitation receive it; significant predicting factors of access to health services include health plan type, health condition, health status, severity of condition, income level, and age	Beatty et al,²⁸ 2003	14	800
• 52% of contact with GPs was for secondary complications; 34% of secondary complications are believed to be preventable; 72% of patients report an unmet need for health care, particularly rehabilitation services	Van Loo et al,¹⁸ 2010	12	453
• Individuals with chronic SCI would like more information regarding aging with SCI and SCI research, and SCI educational information; ethnic minorities have the greatest unmet needs for information	Gontkovsky et al,²² 2007	12	82
• 40% of physiatrists are willing to provide primary care to those with disabilities; 38% feel prepared by residency training to do so	Francisco et al,³⁵ 1995	11	104
• Physiatrists consider bone health after SCI to be an important issue and favour pharmacologic treatment over rehabilitation	Ashe et al,¹⁶ 2009	11	22
• There is considerable duplication between primary care and physiatry; there is high satisfaction with primary care and physiatry; needs for lifestyle and emotional issues often go unmet; there are differences in service use between those in Canada, the United States, and the United Kingdom, but no difference in access to and satisfaction with the services	Donnelly et al,²¹ 2007	10	373
• 90% of individuals with SCI would like to receive written information about their conditions following medical checkups	Vaidyanathan et al,³⁰ 2001	10	128
• 80% of issues raised by patients with SCI in primary care are related to disability; health promotion and counseling needs are typically unmet	Warms,³⁶ 1987	9	59
• Barriers to specialized multidisciplinary outreach services are limited local expert knowledge, lack of funding, and service fragmentation	Cox et al,³¹ 2001	9	54
• Most medical residents are not comfortable treating a women with tetraplegia who has recently become pregnant	Oshima et al,³² 1998	9	44
• Patients receiving transitional, home-based rehabilitation as an outreach program from a rehabilitation centre experienced benefits in coordination and education of local providers, as well as family, community, and specialist involvement	Booth and Kendall,²⁰ 2007	9	40
• Half of SCI outpatients consider physiatry to be their primary care; 90% have little difficulty receiving medical care in the community	Bockeneck,³³ 1997	8	144
• 75% of people with SCI have multiple clinical problems; patients made an average of 4 GP visits and received an average 4.5 home visits a year	Glickman et al,³⁴ 1996	6	139

ED—emergency department, SCI—spinal cord injury.
↵* Levels of evidence according to Sackett et al, 2000.³⁸ Level 2 evidence includes quasi-experimental studies such as prospective studies and non-randomized comparison group and observational studies; level 3 evidence includes pre-experimental studies such as uncontrolled studies and historical and retrospective reviews; level 4 evidence includes observational studies including posttest-only designs, case series, and secondary analyses of administrative data; level 5 evidence includes surveys, case reports, and single-subject studies.
↵† Methodologic rigour score, evaluated on a scale from 1 to 20, with higher scores corresponding to higher levels of methodologic rigour; Downs and Black, 1998.³⁷