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Rehabilitation Practices

Outpatient and Follow-up Care

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Various authors have noted the importance of providing continued, regular, specialized follow-up care following discharge from rehabilitation (Ernst et al. 1998; Cox et al. 2001; Dryden et al., 2004). In a recent review, Bloemen-Vrencken et al. (2005) described various follow-up programmes for persons with SCI. These authors noted that the vast majority of the papers in this area offered little more than a description of the program with 5 of these being identified as either experimental or quasi-experimental in nature. Of these, 2 studies examined the effect of various models of care associated with routine after-care (Dinsdale et al. 1981; Dunn et al. 2000), while the remaining 3 studies focused on evaluations of telehealth applications (specifically telemedicine) or nursing education for the prevention of pressure sores or UTIs (Barber et al. 1999; Phillips et al. 1999; Phillips et al., 2001). The present section describes the literature examining different approaches to the provision of follow-up care, recognizing that several of these involve the investigation of the role of telehealth applications. Cox et al. (2001) performed a needs assessment of 54 community-dwelling individuals with SCI using structured telephone interviews and reported a perceived high need for a specialist, multidisciplinary SCI outreach service. Some of the issues identified as the greatest areas of need included dealing with physical changes, transportation, work issues, ongoing education and pain management. The primary barriers to needs being met were overwhelmingly related to limitations of local expert knowledge but also included inadequate funding, complicated processes or service fragmentation and not knowing where to go for help. Preferred service delivery options in order of preference included telephone advice, home visits, SCI outpatient clinics, community-based service and regional hospital clinics (Cox et al. 2001). Similar suggestions have been provided by clinicians, especially as they observe the consequences of inadequate care received by some individuals upon discharge from inpatient rehabilitation programmes (Vaidyanathan et al. 2004). Despite these reports, little direct evidence has been established for the effectiveness of different methods of providing follow-up care.

Author, Year; Country
Research Design
PEDro Score
Sample Size

Methods Outcomes

Dallolio et al. 2008; Italy
RCT
PEDro score=6 Ninitial=137, Nfinal=127

Population: Those discharged from initial rehabilitation care; Mean age=40yr; Gender: males=107, females=20; Level of injury: tetraplegia=47, paraplegia=77, unknown=3; Median rehab stay=186.5- 230 days.
Intervention: Usual follow-up care versus the same combined with 8 weekly telemedicine sessions followed by nine bimonthly telemedicine sessions. Telemedicine sessions consisted of patient interviews to assess signs / symptoms of various complications & associated recommendations. Alternatively, sessions focused on functional issues.
Outcome Measures: FIM, SCIM II, healthcare utilization, status of various complications and satisfaction with care collected just before discharge and 6 months post.

  1. There was no difference in FIM or SCIM II scores across all 3 sites, however, there was a significant increase in FIM gain at the largest (Italian) site for both overall FIM and FIM motor score (p<0.01) as well as some individual SCIM II items.
  2. There was no difference between groups in prevalence of secondary complications.
  3. Persons receiving the telemedicine contacts were significantly more satisfied with their care than those receiving routine follow-up care (p<0.001).

Bloeman-Vrencken et al. 2007; Netherlands Prospective Controlled Trial
Ninitial=149, Nfinal=62

Population: Those receiving initial rehabilitation care; Mean age=37.8yr (transmural), 36.1yr (usual care); Gender: males=48, females=14; Level of injury: tetraplegia, paraplegia; Severity of injury: Complete, incomplete; Avg rehab stay=270.7 (transmural), 294.1 (usual care) d.
Intervention: Matched sample of those receiving transmural care (community patients served by transmural nurse liaising with other health professionals) versus ‘usual follow-up care’ (periodic visits to rehabilitation doctor / centre).
Outcome Measures: Prevalence of pressures sores, UTIs or other complications and number and duration of associated hospital re-admissions assessed over first year post-discharge.

  1. No difference between groups in prevalence of pressure sores and UTIs or other complications.
  2. No difference between groups in hospital re- admissions due to secondary complications.

Dunn et al. 2000; USA Prospective Controlled Trial
Ninitial=371, Nfinal=371

Population: SCI-specialist follow-up care (n=235): mean age=56.6yr; Gender: male=99%, female=1%; Level of injury: paraplegic=52%, tetraplegic=48%; Severity of injury: complete=46%, incomplete=54%; Time since injury=19.4 yr. No follow-up care (n=136): mean age=47.9yr; Gender: male=66%, female=44%; Level of injury: paraplegic=58%, tetraplegic=42%; Severity of injury: complete=62%, incomplete=38%; Time since injury=18.2 yr.
Intervention: Follow-up care (routine check-ups in SCI Outpatient Clinic) versus no follow-up care (presumably problem-based primary care).
Outcome Measures: Secondary Condition Surveillance Instrument (SCSI), Check Your Health (CYH) Questionnaire. One time survey of both groups.

  1. Those receiving regular follow-up scored higher on all 3 subscales of CYH, Health (p=0.0068), Independence (p=0.005) and Absence of Depression (p<0.0001).
  2. Those receiving regular follow-up reported similar secondary conditions as those without routine follow-up but with reduced frequency and rated it as less severe.

Phillips et al. 1999; USA
Prospective Controlled Trial
Ninitial=35, Nfinal=35

Population: Telephone group (n=13): mean age=29.6±6.4; Gender: male=69%, female=31%; Level of injury: not reported; Severity of injury; not reported; Time since injury: not reported.
Video group (n=12): mean age=33.4±13.8; Gender: male=69%, female=31%; Level of injury: not reported; Severity of injury: not reported; Time since injury: not reported.
Standard care (n=10): mean age=38.1±15.2; Gender: male=69%, female=31%; Level of injury: not reported; Severity of injury: not reported; Time since injury: not reported.
Intervention: Subjects were recruited to one of 3 groups: i) Video group: received weekly counselling sessions for 10-12wk using AT&T Picasso Still- Image video unit for the first 6-8wk followed by 4-6wk of weekly telephone counselling sessions; ii) Telephone group: telephone counselling for 10wk; iii) Standard care group.
Outcome measures: Pressure ulcer incidence; frequency of health care utilization. All groups were surveyed every 2-3mo.

  1. Ulcer incidence: video group had highest number of identified/reported pressure ulcers followed by the standard care group then the telephone group although none of these differences were statistically significant (p>0.05).
  2. Health care utilization: annualized ER visits, hospitalizations and provider visits were lowest in standard care group and similar for telephone and video groups although none of these differences were statistically significant (p>0.05).

Shem et al. 2017; USA
Pre-Post Ninitial=10, Nfinal=8

Population: Mean age: 34.4yr; Gender: male=8, female=2, Level of injury: cervical=7, thoracic=3; Severity of injury: AIS A=7, B=1, C=2.
Intervention: Individuals with SCI participated in a telemedicine program for pain, bladder, skin management, medication changes and lab results using iPads for 6 mo. Outcome measures were assessed at baseline and at 6 mo.
Outcome measures: Healthcare utilization, Quality of life (QoL), Reintegration to Normal Living Index (RNLI), Life Satisfaction Index A (LSI- A), Patient Health Questionnaire (PHQ- 9) and program satisfaction survey.

  1. Over the course of 6 mo, 57 in person physician visits were reported. This included visits to gastroenterologists, neurologists, ophthalmologists, orthopedics, otolarnygologists, pain specialists, pulmonary specialists, urologists and wound care specialists.
  2. A total of 10 ER visits and 4 hospitalizations occurred. The majority of which were not using telemedicine that month.
  3. A total of 16 telemedicine visits occurred via FaceTime, where physicians were successfully able to address topics related to spasticity, skin management, bladder and bowel function, pain, medications, heterotopic ossification and general follow-ups.
  4. A total of 9 nurse encounters occurred over the phone or via FaceTime. Nurses were able to address topics related to skin checks, bladder irrigation, bowel training programs and changes in urine.
  5. No significant differences in QoL, RNLI, LSI-A or depression (PHQ-9) were observed from baseline to 6 mo.
  6. All users reported positive experiences with the program and said they would like to continue with the program.

Derakhshanrad et al. 2015; Iran
Pre-Post Ninitial=134, Nfinal=134

Population: Median age: 27yr; Gender: male=104, female=30; Level of injury: C1-4=8, C5=6, C6=8, C7-8=4, T1- 6=14, T7-12=91, L1-S1=3; Severity of injury: AISA A=134.
Intervention: Patients with complete SCI (AIS A) completed an outpatient rehabilitation program consisting of bimonthly education programs, combined with twice-weekly OT, PT, and home nursing for a 6-month period. Outcome measures were assessed at baseline and post-treatment.
Outcome measures: Spinal Cord Independence Measure (SCIM III) score.

  1. A significant increase in median total SCIM III score was observed when baseline scores were compared with post-treatment scores (p<0.001).
  2. Increases in SCIM III scores were greater in lower cervical and thoracic cases (8.75 and 13.5).
  3. No improvement was observed in self-care (feeding, bathing, dressing and grooming) or mobility (room, toilet, indoors and outdoors) for upper cervical level patients.
  4. Subjects with injury below C7 had a significant gain in sphincter management scores (5-8 units).
  5. Subjects with L1-S1 injury showed the greatest improvement in mobility (indoors and outdoors) and sphincter management subscales.
  6. With the exception of high cervical patients, all subgroups significantly improved their SCIM III score (p<0.05).

Zinman et al. 2014; Canada
Pre-Post Ninitial=21, Nfinal=14

Population: Mean age: 46.6±10.1yr; Gender: male=10, female=11, Level of injury: paraplegia=4, tetraplegia=9, unknown=1; Severity of injury: complete=2, incomplete=11, unknown=1.
Intervention: Participants evaluated the effectiveness of a community reintegration outpatient (CROP) service for promoting well-being and community participation following SCI. Outcome measures were assessed at baseline, 12 wk and 3 mo.
Outcome measures: Mooring Self- Efficacy Scale (MSES), Impact on Participation and Autonomy (IPA), Positive Affect and Negative Affect Scale (PANAS), Coping Inventory of Stressful Situations (CISS), World Health Organization Quality of Life (WHOQOL-BREF), semi-structured qualitative interviews.

  1. MSES and PANAS significantly improved from baseline to 12 wk (p<0.05), however, no significant differences were observed at 3 mo.
  2. No significant differences were observed in any other outcome measures.
  3. Qualitative analysis identified four major themes related to therapeutic benefit: 1) role of self, 2) knowledge acquisition, 3) skill application, and 4) group processes.

Lugo et al. 2007; Columbia
Pre-Post Ninitial=208, Nfinal=42

Population: Mean age=32.6 yr; Gender: males=33, females=9; Level of injury: C=14, T1-6=14, below T6=14; Severity of injury: AIS A=26, B=4, C=5, D=6, E=1
Intervention: Patients received a 2- phase interdisciplinary rehabilitation program consisting of a short in-patient phase (mean=13.5 days) and an out- patient phase over 18mo.
Outcome Measures: Motor FIM, ASIA motor score, Complications assessed over 5 periods including admission to the end of the first month and then months 2-3, 4-6, 7-12, 13-18.

  1. Motor FIM scores progressively increased significantly from admission to first mo and after 1yr of rehabilitation (p<0.01) showing most marked increase between admission and mo 2-3.
  2. Patients in AIS A and B groups reached motor FIM ceiling scores in the 18th mo, while those is the C, D, E group reached ceiling in the 12th mo.
  3. AIS motor scores progressively increased from admission over 18 mo, however, persons with cervical injuries had most marked increases between admission and mo 2-3.
  4. Complication rates for those conditions often associated with SCI (i.e., pressure sores, spasticity, pain, incontinence) remained high over the study period (deemed no different that in hospital-based programmes).

Vesmarovich et al. 1999; USA
Pre-Post
Ninitial=8, Nfinal=8

Population: Age range=38-78 yr; Gender: male=8, female=0; Level of injury: cervical=5, thoracic=3; Severity of injury; not reported; Time since injury: not reported.
Intervention: Weekly telerehabilitation visits using Picasso Still-Image Videophone which simultaneously transmits video and audio over ordinary telephone lines. Participants and family members received 30-minute hands-on training session with equipment. Informal interviews with participants and families conducted to determine satisfaction.
Outcome measures: Number of clinic visits, status of pressure ulcers, subjective satisfaction assessment completed by patients, families and care providers.

  1. Mean of 7 visits /patient (range 1-18) via in-home video consult.
  2. Seven of 12 wounds were healed over 8 patients.
  3. Telerehabilitation approach was accepted as a valid alternative to clinic visits by patients and family members – for many it was preferred.
  4. Clinicians identified several technical concerns throughout project but these were solved.

Kim et al. 2012; Korea
Observational Ninitial=93, Nfinal=93

Population: SCI(n=57): Mean age: not reported; Gender: male=58%, female=42%; Level of injury: not reported; Severity of injury: not reported. Health Professionals (n=36): Mean age: not reported; Gender: male=93%, female=7%.
Intervention: No intervention. Retrospective survey evaluating interest and opinion of telerehabilitation in individuals with SCI and health professionals.
Outcome measures: Awareness, understanding, value, needs, and desirability of telerehabilitation.

  1. Survey responses indicated interest in telerehabilitation services among individuals with SCI, as 46.6% rated telerehabilitation as very positive.
  2. There was interest in services that could be used to resolve issues on unmet medical needs of individuals with a disability related to health monitoring, sustaining health, rehabilitation interventions, and independence in activities of daily living.
  3. The most required need for service was reported as UTI (21.9%), followed by pressure ulcers, central pain management, orthostatic hypotension, depression, obesity management, paralytic ileus, osteoporosis and pneumonia.
  4. Patients reported an internet-connected service as the preferred method of telerehabilitation.
  5. Of the physicians surveyed, 69.4% were aware of telemedicine, 86.1% reported they are inexperienced with telemedicine, 47.2% preferred a video system with telemedicine and 38.9% rated the desirability of telemedicine as positive.
  6. Telerehabilitation risks were ranked in order of importance by health professionals as: (1) concerns relating to medical responsibility, (2) possibility of medical malpractice, (3) financial burden of initial equipment, (4) health insurance cost, (5) misunderstanding of roles and interests, (6) over issuing electronic prescriptions, (7) lack of telerehabilitation professionals and training programs, (8) technical issues on privacy and security.
  7. SCI rehabilitation was the most physically requested area of telerehabilitation services (23.4%).

Discussion

Dunn et al. (2000) performed an exploratory study of the value of receiving regular, comprehensive outpatient health care follow-up as compared to those who were deemed to have no access to these services. Although this investigation was limited by a poor description of the specific services offered to both the experimental and control groups, there were significant differences in the perceived health, independence, and absence of depression in those seen regularly in outpatient clinics. In addition, this group had significantly less frequent occurrences of specific secondary conditions and also rated the severity of these conditions as less than those having no access to these clinics (Dunn et al. 2000). Although this trial was prospective in nature and attempted a quasi-experimental controlled methodology, the potential confounds (i.e., gender, completeness, race, age, veteran status) varied greatly between the experimental and control groups. In addition, it was uncertain if selection bias may also have been an issue, as the authors did not specify what percentage of individuals within their own service provision cohort refused or did not receive regular outpatient care. These limitations resulted in this study being assessed as having a Level 4 level of evidence. Similarly, Bloemen-Vrencken et al. (2007) conducted a large scale investigation comparing the utility of a transmural nurse to liase between community-based patients and health care professionals as compared to routine outpatient care as characterized by periodic visits to a rehabilitation doctor or centre, but results were limited by methodological problems. No differences were seen between a matched sample (n=31 in each group) in terms of the prevalence of secondary complications (i.e. notably pressure sores or UTIs) or associated healthcare utilization over the first year post-discharge. The authors noted several limitations with this study, in addition to recruitment issues that resulted in a sample that was half the intended size. Most notably, the implementation of the transmural nurse program was deemed inadequate with nurses making less home visits than was intended. In addition, centres participating in the control condition enhanced their outpatient program mid-study and it was also felt that the follow-up period of one year was too short given the observation that many patients are more consistent in attending follow-up visits during the early post-discharge period but then gradually may lose contact with the rehabilitation centre. Due to financial constraints in the developing country of Columbia, Lugo et al (2007; N=42) reported on prospectively planned FIM and ASIA outcomes resulting from an interdisciplinary outpatient program of rehabilitation for individuals with SCI. An average 13.5 day in-patient rehabilitation program was augmented with 18 months of follow-up (at 1, 3, 6, 12 & 18 month time points). Although there was a lack of accessibility to continuous therapy, some functional goals were achieved over the 18 month treatment period. In the absence of protocolized SCI care in developing countries, regular interdisciplinary follow-up and low-cost outpatient service delivery can be effective in achieving functional rehabilitation goals provided that provisions are made for program accessibility (i.e. transportation). Telehealth applications seem especially amenable to the provision of follow-up care given the typical care model of specialized health care services centralized in large urban centres that must continue to meet the needs of patients as they return to their disparate communities and as they link with primary care practitioners, who often lack specialized knowledge about optimal SCI management. Dallolio et al. (2008) conducted a multi-centre RCT (n=127) across 3 centres in Italy, Belgium and the UK that employed a series of telemedicine videoconferences that served to assess the risk of secondary complication development in informing prevention and treatment recommendations and also to address issues that would enhance function. Overall, patients that received the telemedicine sessions did not show significant increases in FIM or SCIM II gains, nor reductions in secondary complication development as compared to those who underwent routine follow-up visits. However, site by site analysis demonstrated that patients participating in the telemedicine intervention at the largest site (Italy, n = 59 of 127) did show significantly increased functional benefits. In addition, when considering participants across all 3 sites, patients were generally more satisfied with their care when receiving telemedicine visits as an adjunct to their regular care. Earlier studies have also suggested that telehealth has promise in delivering education directed towards preventing secondary complications, most notably pertaining to pressure sore management. Vesmarovich (1999) and colleagues published 2 separate reports noting the potential of a telehealth application (i.e., Picasso Still-Image Videophone) in managing and preventing further pressure sores (Phillips et al. 1999; Vesmarovich et al. 1999). In an exploratory pilot study using a pre-post study design (n=8), Vesmarovich et al. (1999) reported that this approach facilitated education, allowing it to be provided at the point of need, thereby reinforcing previous inpatient rehabilitation education. Phillips et al. (1999) compared the same videophone technology to telephone-only consultation or standard care in a prospective controlled trial (n=37) investigating participants newly discharged from inpatient rehabilitation to home. Standard care consisted of access to a helpline which offered free information and counselling over the study period. The videophone group received weekly counselling sessions focusing on self-checking for pressure ulcers and other related education via videophone for 6-8 weeks followed by weekly telephone counselling for 4-6 weeks. Similar activities were conducted with the telephone group for 10 weeks following discharge. No significant differences were reported across the 3 groups with respect to doctor/hospital/ER visits, calls to helpline, pressure sore occurrences/characteristics or employment status. The videophone group reported the highest number of ulcers over a variable follow-up period of 7 ± 2 months but this was attributed to more stage I and II ulcers being identified using this approach. In addition, participants in the videophone group had the highest rate of return to work. The authors did note that this study was severely limited by inadequate sample size, inability to control for confounding variables and non-randomized design and therefore the level of evidence assigned to this article has been downgraded to Level 4. Power calculations assuming 80% power revealed that a sample size of 120 would have been required to detect an effect of the intervention in increasing post-injury employment by 5%.

Conclusions

There is limited level 4 evidence that provision of routine, comprehensive, specialist follow-up services may result in perceived improvements of health, independence and less feelings of depression.

There is limited level 4 evidence that coordination of care through a community-based transmural nurse has no effect on reducing secondary complications and associated health utilization as compared to routine outpatient care consisting of periodic visits to a specialized rehabilitation doctor or centre.

There is level 4 evidence that regular and accessible interdisciplinary follow-up can result in achieving functional goals where protocolized SCI care is unavailable.

There is limited level 1 evidence from a single study that telemedicine videoconferencing as an adjunct to routine follow-up care improves patient satisfaction and may lead to enhanced functional outcomes.

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