A number of models have been proposed in the literature for enhancing access and quality of primary care for people with disabilities. This review found evidence only regarding outreach models where expert providers, usually from an institutional rehabilitation setting, reach out to supplement the resources of community primary care settings. Table 2 presents information on multidisciplinary outreach programs, including telehealth.
|Author Year; Country
Total Sample Size
|Dorstyn et al. 2013
AMSTAR = 5
|Population: 7 independent studies published between 2001-2011, all included those with SCI
Purpose: Systematic review of telecounselling interventions in spinal cord injury
Outcome measures: Varied, included health and psychological well-being, provision of information, peer-support.
|1. Some evidence that telecounselling can significantly improve management of common comorbidities, including sleep difficulties and pain.
2. Some gains in quality of life at 12 months after treatment.
|Dorstyn et al. 2011
AMSTAR = 7
N = 204
|Population: 8 studies published between 1970-2010, 3 involving SCI
Purpose: meta-analysis of telehealth psychological interventions for people with SCI & other disabilities
Outcome Measures: 22 standardized outcome measures, incl. QOL, depression, coping, social support, community integration, impairment
|1. Strong evidence that coping, community integration and health-related quality of life associated with telehealth counselling
2. Improvements attributed to attention and early intervention on new health issues and complications
|Author Year; Country
Total Sample Size
|Mackelprang et al. 2016
PEDRO = 4
|Population: 168 SCI patients discharged between 2007 and 2010.
Sex – Male 133 (79), Female 35 (21)
C1-4 AIS A-C 34 (20)
C5-8 AIS A-C 22 (13)
Paraplegia AIS A-C 47 (28)
AIS D 63 (38)
Treatment: Single-site, single-blind, randomized (1:1) controlled trial comparing usual care plus TC with usual care (UC). The TC group received up to eleven 30-45 minute scheduled telephone calls to provide education, resources, and support. The UC group received indicated referrals and treatment.
Purpose: To describe the outcomes of a trial of telephone counseling (TC) to reduce medical complications and to improve psychosocial outcomes during the first year after SCI rehabilitation.
Outcome Measures: a composite of self-reported health care utilization and medical complications. Secondary outcomes were depression severity, current health state, subjective health, and community participation.
|1. No significant differences were observed between TC and UC groups in the primary or secondary psychosocial outcomes.|
|Dorstyn et al. 2012
Randomized Controlled Trial
PEDro = 8
|Population: Adults aged 18+ who were recently discharged from an inpatient spinal rehabilitation centre; 69% men, 59% married or in a relationship; 62% had paraplegia; 56% traumatic SCI; 64% incomplete.
Treatment: 12-week telecounselling program which included biweekly phone consults. Aimed to be brief (average less than 20 minutes) and based on motivational interviewing technique. Standard care involved routine medical follow-up and physical therapies.
Outcome measures: Depression Anxiety Stress Scale-21; Mini International Neuropsychiatric Interview; Spinal Cord Lesion Emotional Wellbeing and Coping Strategies Questionnaires; and the Multidimensional Measure of Social Support
|1. Telecounselling group experienced small reductions in depression (d = 0.32), anxiety (d = 0.24), and stress levels (d = 0.27) immediately post-intervention, but a small to moderate increase in anxiety at a 3 month follow-up (d = –.37)
2. The telecounselling group also experienced some small to moderate improvements in emotionally adjusting to their SCI (fewer intrusive thoughts d = -.53; greater acceptance d = .46)
3. Few participants (20 per group) contributed to significant pre-trial differences between groups (completeness of SCI, length of stay and discharge FIM scores) and non-statistically significant treatment effects.
|Bloemen-Vrencken et al. 2007
Prospective Controlled Trial
|Population: 31 experimental participants (24 male, 7 female); mean age: 37.8±13.8 yrs; Injury: paraplegia (n=18) or tetraplegia (n=13). 31 control participants (24 male, 7 female); mean age: 36.1±13.6 yrs; Injury: paraplegia (n=18) or tetraplegia (n=13).
Treatment: Transmural care (nurse as a liaison between participant, primary care and rehabilitation centre) for at least 1 yr after discharge in addition to the usual follow-up care; Control group: received usual follow-up including periodic outpatient visits to rehabilitation center.
Outcome measures: Prevalence of pressure sores and urinary tract infections during first year after discharge; number and duration of re-admissions to hospital and rehabilitation centers due to pressure sores, bladder, and bowel problems in the first year after discharge.
|1. No significant differences seen in prevalence of pressure sores and urinary tract infections between groups.
2. No significant difference seen in re-admission rates between groups.
3. Quality of follow-up care experienced not significantly different between groups.
|Van Til et al. 2010
|Population: 39 SCI patients (29 male, 10 femal); mean age:42 yrs
Treatment: Self-administered web-based Decision Aid (DA) for treatment options for arm-hand impairment
Outcome measures: Demographics, knowledge score after use of DA
|1. Significant reduction of decisional conflict (p<0.01); decreased feeling of uncertainty (p=0.02) and feeling uninformed (p<0.01).
2. The DA did not influence the patient’s desire to participate in decision-making processes. It is suggested that although most patients want to be informed about disease, they do not necessarily want to be involved in treatment decision-making
|Young-Hughes & Simbarti 2011
|Population: 76 SCI veterans (3% F),
received wound care for decubitus ulcer, cellulitis, osteomyelitis, or open wounds
Treatment: wound care by specialty tele-consultation vs traditional care
Purpose: Comparison of cost of telehealth vs in-person wound care
Outcome Measures: inpatient admissions, outpatient encounters, costs for care
|1. Tele-consultation group had significantly more outpatient encounters (12 vs. 4, p = .007; 70 vs 52% of participants), and higher median cost per outpatient encounter ($440 vs. $141, p < .01)
2. No significant difference in inpatient admissions between groups, but tele-consultation group had longer inpatient stays (median 81 vs. 19 days, p=0.05); No significant difference in inpatient cost.
|Population: 31 participants seen at experimental nurse-led clinic on 6 different days
Treatment: Nurse-led clinic: holistic nursing assessment, peer-support group,
Outcome measures: Effectiveness of nurse-led services
|1. Reported benefits from nurses’ up-to-date knowledge of specific bowel/bladder problem-solving approaches.
2. Patients perceived nurses to be more understanding, better informed and found sessions more informative, practical, and helpful.
|Prabhaka & Thakker
|Population: 546 participants (164 male, 382 female)
Treatment: A home visit with outreach team consisting of: counsellor, surgeon, physiotherapist, occupational therapist, prosthetist and orthotist engineer, medical social worker and a nurse. Complete assessment of rehabilitation performed including vocational, bladder-bowel, and sexual rehabilitation. Researched problems faced by SCI patients, family and societal relations, available support and opportunities for vocational rehabilitation.
Outcome measures: Evaluation and improvement of rehabilitation to decrease the rate of hospital re-admissions.
|1. Home visit program decreased the number of re-admissions, improved status of rehabilitation and raised quality of care for patients.|
|Beck & Scroggins 2001
|Population: Persons with tetraplegia (n=3) and long-term health care providers (n=16).
Treatment: Health Maintenance Education Program made up of 3 phases: 1. 1-day interdisciplinary workshop to provide research-based knowledge on care; 2. Collaborative home visit to provide individualized assessment, education and intervention; 3. 12-months of on-going support to the consumer and care provider relationship.
Outcome measures: Program evaluation forms.
|1. Statistically significant increase in knowledge of: prevention of respiratory complications (p<0.05); prevention & treatment of autonomic dysreflexia (p<0.05); prevention of spasticity (p<0.01); reportable symptoms (p<0.01); effects of aging (p<0.001); availability of community resources (p<0.01).
2. Benefits included: demonstration of skills, on-site evaluation, awareness of resources
3. Suggested modifications: educational content regarding client vulnerability, client advocacy, discussion of role of agencies.
The highest quality evidence found in this review showed no effect of an outreach program for maintaining health after discharge from rehabilitation (Bloemen-Vrencken et al. 2007). Bloemen-Vrencken et al. (2007) saw no difference in complications, readmissions, or quality of primary care when a nurse provided liaison from rehabilitation to community primary care.
Another approach to outreach involved a nurse-led clinic aimed at enhancing bowel and bladder care. Participants reported more up-to-date and practical information was obtained from nurses than from their usual primary care providers (Williams 2005).
Beck and Scroggins (2001) also describe an educational intervention aimed at people with tetraplegia and their caregivers. They found significant increases in knowledge and skills related to respiratory complications, autonomic dysreflexia, spasticity, reportable symptoms, effects of aging and availability of community resources.
Other strategies for improving primary care to people with spinal cord injuries include the use of home visits. Prabhaka and Thakker (2004) showed a decrease in readmissions, and an increase in functional status and quality of care using a home visit program.
Since 2011, there have been three articles assessing telehealth programs and three discussing web-based outreach programs. These interventions were typically compared with the more resource-intensive in-person approach to outreach. Dorstyn et al. (2011) compare three published approaches to telehealth technology and applications. Based on meta-analysis, they conclude that there is strong evidence that telephone-based outreach is effective. Young-Hughes and Simbartl (2011) however found that for severe problems with significant functional implications, such as pressure ulcers, the in-person option was more effective. A recent study comparing a telephone outreach program to standard care found that the treatment groupexperienced small reductions in depression, anxiety, and stress levels immediately post-intervention, but a small to moderate increase in anxiety at a 3 month follow-up (Dorstyn et al. 2012). The telecounselling group also experienced some small to moderate improvements in emotionally adjusting to their SCI. These results suggest that telehealth shows promise but further trials incorporating longer treatment periods and larger numbers of participants are needed to definitely establish treatment effects, as well as to eliminate any pre-trial group differences.
Radomski et al. (2011) found that a 12-week weight management program helped individuals with SCI reach their weight and body measurement goals, and Myers et al. (2012) found that an intensive program involving a case manager, dietician, physician and exercise therapists resulted in improvements in some CVD risk factors though both of these studies had small numbers of participants.
Three articles described web-based information programs on general SCI issues (Hoffman et al. 2011), specific skills (Schladen et al. 2011) and treatment decisions (van Til et al. 2010). For those patients who are comfortable with internet technology, these innovative options appear to hold considerable promise.
There is level 1a evidence from meta-analysis that telehealth outreach is effective for meeting information needs of patients (Dorstyn et al. 2011)
There is level 1a evidence from systematic review that telecounselling is effective for managing common SCI comorbidities, including sleep difficulties and pain (Dorstyn et al. 2013)
There is level 1a evidence that telephone counselling led to improvements in anxiety, depression and coping following SCI but more powerful research is required to establish statistically significant differences (Dorstyn et al. 2012).
There is level 2 evidence that an outreach program (Transmural care – nurse liaison from rehab to primary care) does not appear to be effective in reducing pressure sores, urinary tract infections or hospital re-admission rates (Bloemen-Vrencken et al. 2007)
There is level 4 evidence that a weight management program can help individuals meet their goals for weight and body measurements (Radomski et al. 2011).
There is level 4 evidence that outreach in the form of home visits from a multidisciplinary team from the rehab centre led to fewer re-admissions and improved rehab outcomes (Prabhaka & Thakker 2004).
There is level 4 evidence that a multidisciplinary Health Maintenance Education outreach program improves patient satisfaction with primary care and increases knowledge of respiratory complications, autonomic hyperreflexia, spasticity, aging and community resources (Beck and Scroggins 2001).
There is level 4 evidence that a specialised 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 2005).
There is level 4 evidence suggesting an online forum is not as effective as in-person education, despite being more accessible (Hoffman et al. 2011).
There is level 5 evidence that an intensive dietary and exercise program can improve markers of CVD risk (Myers et al. 2012).
There is level 5 evidence that teleconsultation for wound care led to more outpatient encounters and higher median cost than traditional care (Young-Hughes and Simbartl 2011).
There is level 5 evidence that a web-based Decision Aid for arm-hand treatment options reduces decisional conflict and feelings of uncertainty (van Til et al. 2010).