Since persons with spinal cord injury (SCI) are confronted with all kinds of short- and long-term problems in functioning after discharge from initial rehabilitation, the need for continuing care for persons with SCI living in the community has been emphasised in several reports.1, 2, 3, 4, 5, 6, 7, 8

Until recently follow-up care provided by the Dutch rehabilitation centres has consisted of periodical outpatient visits to a physiatrist. During these visits a comprehensive assessment of total functioning is performed and, if necessary, interventions or other support is given. After discharge from clinical rehabilitation, daily medical and nursing care for persons with SCI is usually given by primary care professionals. As a result of the low prevalence of persons with SCI, primary health-care professionals only sporadically have persons with SCI in their practice. Consequently, they do not often have much opportunity to gain sufficient knowledge and experience about the specific care these patients need. As a result of this and the high prevalence of health problems, rehabilitation teams want to extend their role in follow-up care to persons with SCI living in the community.

In order to be able to learn from other initiatives regarding follow-up care, this systematic review was initiated. At present there is no systematic overview of the content follow-up care programmes and the effects on the prevalence of health problems.

The purpose of this paper is to provide an overview of published follow-up care programmes provided by rehabilitation centres to persons with SCI after their in-patient and outpatient rehabilitation. This study is focused on medical and nursing follow-up care, since most problems SCI patients experience are within the scope of the medical and nursing profession. The second objective is to describe the effects of these published follow-up care programmes on the occurrence of secondary impairments, well-being, the quality and costs of care.


Search strategy

Publications were selected from the MEDLINE (1972–2003) and CINAHL (1982–2003) databases. In all search strategies we combined several terms for spinal cord injuries (ie tetraplegia, paraplegia, spinal cord injuries) with a broad range of keywords related to follow-up care (ie follow-up care, long-term care, aftercare, continuity-of-patient care, patient discharge, outpatient care, ambulatory-care-facilities, primary-health care, home care, home rehabilitation, community care, disease management, shared care). The search strategy is described in Figure 1. The definition of a keyword given in the thesaurus list of the databases was used to determine whether a keyword was appropriate to use in the search strategy. Only publications written in Dutch, English or German were taken into consideration.

Figure 1
figure 1

Search strategy

Selection procedure

A publication was selected if it described medical and/or nursing follow-up care to persons with SCI living in the community after their in-patient- and outpatient rehabilitation. The aim of the follow-up care should be a decrease of secondary impairments, an improvement of well-being, an improvement of the quality and/or a decrease of the costs of care. Furthermore, it should describe follow-up care performed by or in cooperation with rehabilitation facilities for SCI patients.

The first phase of the selection was performed by three investigators (LW, MP and JB) by reading the titles and, if available, the abstracts of all the initially identified publications. All publications selected by at least two of the three investigators were obtained and studied by the first investigator (JB) in order to determine whether the inclusion criteria mentioned indeed were applicable. In case of doubt on selection of a publication, the other investigators were consulted.

Assessment of selected follow-up care interventions

The follow-up care programmes were systematically described with respect to the aims, target population, method, responsible care disciplines, and content of the follow-up care. If there was a control/comparison group, the content of the treatment the persons in this group received was also described.

Follow-up care programmes that had been evaluated were described with respect to design, number of patients, outcome measures, and results. The studies were categorised as experimental, quasi-experimental or pre-experimental, according to the classification as described by Polit and Hungler.9 In this classification an experiment is defined as a study in which the investigator controls (manipulates) the independent variable and randomly assigns subjects to different conditions. Quasi-experiments involve manipulation but lack a comparison group or randomisation. In quasi-experiments efforts are made to introduce controls to compensate in part for the absence of one or both of these important characteristics. Pre-experiments do not include controls to compensate for the absence of either randomisation or a control group.


Results of the search strategy

The search for publications resulted in almost 800 titles of which 99 were selected by at least two of the three researchers as being possibly relevant. The types of these 99 publications varied. Only a minority had a scientific format, including an abstract, introduction, methods, results, discussion, and conclusion section. Also some letters to an editor, a job description, and a research abstract were included. Sometimes it was hard to decide whether or not to include a publication, because, for example, the information about the follow-up care was too brief. Finally, 24 of the 99 initially selected publications were included in this review.

The reasons for not including the remaining 75 publications varied. A total of 17 publications focused on the care during rehabilitation and discharge-preparation, 10 publications focused on the importance of follow-up care, but did not describe a programme, eight publications described or evaluated care provided by primary care professionals only, two described in-patient care programmes for patients readmitted due to pressure sores, two publications reported health problems after discharge, and the remaining 35 publications were excluded for all kinds of reasons (eg publications focusing on the importance of good education materials, a well-organised continuum of care, health problems after discharge, case descriptions not dealing with follow-up care provided by the rehabilitation centre).

Intervention characteristics

Table 1 displays the aims, methods used, care disciplines responsible, and content of the follow-up care programmes identified.

Table 1 Follow-up care characteristics

Principle methods of the follow-up care programmes

Five methods of follow-up care could be identified from the descriptions in the selected articles:

  1. a)

    Telemedicine, the use of telecommunications technology that either delivers or supports the delivery of health services and education via long distance.10, 11, 12, 13, 14, 15 Five of these six projects were performed by the same rehabilitation centre, that is, Shepherd Centre, Atlanta, USA. Since both the content and to some extent the aims were different for each follow-up care programme, all these projects were included in this review.

  2. b)

    Outpatient consulting hours providing physicals, reviews of daily functioning and support in case of health problems.16, 17, 18, 19, 20, 21

  3. c)

    Home visits.22, 23, 24

  4. d)

    Case management, involving the coordination of care within, between, and beyond the acute and rehabilitation programmes, extending care and coordination to the community and managing the reemerging needs of the population over time.25

  5. e)

    Miscellaneous types of follow-up care consisting of several of the following methods: outpatient consulting hours, home visits, peer teaching and support, outings, ongoing support, therapy from several care disciplines, SCI education, providing SCI expertise and support to community health-care providers, coordination of care with community nursing agencies.26, 27, 28, 29, 30, 31, 32, 33

Aims of follow-up care programmes

Prevention and/or treatment of secondary impairments was the most frequently mentioned aim of the follow-up care programmes. Two-thirds of the follow-up care programmes included this in their aims.10, 11, 12, 13, 14, 16, 17, 18, 22, 24, 25, 26, 27, 28, 29, 30 Six follow-up care programmes solely aimed at the prevention and/or treatment of a specified secondary impairment: pressure sores,10, 11, 12, 13, 17 and urinary tract infections.16 Beside this, several of these programmes also had a broader aim like the promotion of well-being and community reintegration.12, 18, 22, 25, 26, 28, 29, 30

In several publications13, 18, 19, 20, 21, 22, 28, 29, 32 the aim of the follow-up care was not stated explicitly, although in most cases an aim could be derived from the text.

Target population of follow-up care programmes

The target population in all follow-up care programmes was persons with SCI recently discharged from rehabilitation and living in the community. Some care programmes also involved in-patients.17, 25, 31, 33 The follow-up care programme described by Beck26 was designed for persons with tetraplegia and their long-term health-care providers. Several care programmes regarded persons with SCI and their partners or families.19, 21, 22, 23, 24, 25, 27, 32, 33

Responsible care disciplines

Almost half of the follow-up care programmes were performed by nurses.10, 11, 12, 13, 14, 16, 22, 24, 25, 26, 33 The remaining programmes were performed by several care disciplines. In the follow-up programme described by Pollack,31 the participants had coresponsibility in the performance. The follow-up care programmes described by Dover,17 Lapierre,20 and Dinsdale28 were performed in collaboration with primary health-care providers. Several follow-up care programmes15, 21, 23, 24, 25, 26, 28, 30 paid attention to the coordination of care with community care agencies/providers, for example, by providing SCI expertise, support and communication of information regarding assessments and treatment plans.

Content of the follow-up care programmes

The degree in which the content of the follow-up care programmes were described was very diverse. The content of patient–caregiver contacts or education were for instance sometimes elaborated, and sometimes not. Sometimes it was hard to distinguish the difference between the follow-up programme and usual care. Sometimes the description of the content of follow-up care described rather scattered, vague, and brief.

Except for the follow-up care described by Steinberg,32 the programmes did not include home therapy or home health aid, for simple nursing procedures such as baths, enemas, etc. Most follow-up care programmes had a supportive, consultative and educative character.

Evaluation characteristics

Table 2 describes the design, number of patients, outcome measures, and outcomes of the studies that evaluated follow-up care programmes. In all, 16 out of the 24 follow-up care programmes had been evaluated to some degree.

Table 2 Evaluation characteristics

Designs of evaluation

In all, 11 evaluations were pre-experimental,10, 12, 16, 20, 22, 23, 24, 25, 30, 31, 32 three studies were quasi-experimental,13, 17, 18 and two studies were experimental in design.14, 28

Number of patients

The number of patients included in the evaluation studies varied from 1 to 519 persons with SCI. Four evaluations of follow-up care did not mention the number of patients.20, 22, 24, 31

Outcome measures

Several publications did not define the outcome measures in a methodology section.10, 12, 16, 17, 20, 24, 26, 32 The outcome measures of these publications, mentioned in Table 2, have been derived from the descriptions of the results. Almost all studies used post-test-only measurements. In a few studies, partly pretest–post-test measurements were performed.16, 26, 32 Five types of outcome measures could be identified from the descriptions in the selected articles:

  1. a)

    the incidence and/or improvement of secondary impairment(s);10, 13, 16, 17, 18

  2. b)

    health-care utilisation: for example, the number and duration of hospital readmissions, and the number of follow-up care contacts;10, 12, 13, 14, 17, 22, 23, 24, 26, 28, 32, 33

  3. c)

    satisfaction with the care;12, 20, 26

  4. d)

    costs of the care;10, 23

  5. e)

    other outcome measures: for example, self-reported health, independence, knowledge, and the level of functioning.12, 13, 14, 18, 24, 26, 28, 31, 32, 33

Results of the evaluations

Most pre-experimental studies claimed positive effects of the follow-up care, although it was sometimes hard to derive this from the results presented. As a result of the pre-experimental design, the results of the evaluations are not included in the evaluation here.

The following effects were found in the quasi-experiments and experiments:

  1. a)

    Incidence and/or improvement of secondary impairments: improvements were found in two17, 18 of the three studies investigating the effects on this variable. In one of these studies17 there was no test for significance. Phillips13 found a higher incidence of pressure sores in the intervention group, but stated that the follow-up care appeared to improve ulcer tracking and management.

  2. b)

    Health-care utilisation: three14, 17, 28 out of four studies investigating the effects on this variable found a decline of health-care utilisation, although no information was provided about the statistical testing of the findings. The remaining study13 reported more hospitalisations in the intervention groups compared with the comparison group, although this difference was not significant.

  3. c)

    Other outcomes: Phillips13 found a higher postinjury employment rate in the intervention group, although this difference was not significant. Dunn18 reported significantly better subjective health, independence and less depression in the experimental group. In another study Phillips14 found, at 1-year postdischarge, significantly higher scores of the quality of well-being in both the intervention groups. On the other hand, at one-year post-discharge, the video group had more depressive symptoms than the telephone or standard care group. Dinsdale28 found no differences with respect to ADL, integration (school and work), and needs detected at follow-up. However, more emotional, housing, vocational and health agency support was used in the intervention group.


The literature search provided only a small number of descriptions of follow-up care programmes. The description of the content of these programmes sometimes was rather scattered, vague and brief. Five methods of follow-up care were identified: telemedicine, outpatient consulting hours, home visits, case management, and mixed types of follow-up care.

In all, 16 out of the 24 follow-up care programmes have been evaluated to some degree. Health-care utilisation was the most frequently studied outcome measure, followed by the incidence and/or improvement of secondary impairment(s). Only a small number of studies paid attention to the effects of follow-up care on the satisfaction with the care, the cost of care, health, and independence. In general, the quality of the evaluation studies was low. Most evaluations were pre-experimental in design. Only three were quasi-experimental, and two were experimental in design. Although several studies found positive effects, it was not possible to draw general conclusions on the effect of follow-up care on the occurrence of secondary impairments, well-being, the quality and costs of care. It can be concluded that the effectiveness of follow-up care programmes for persons with SCI remains far from proven.

The results of this review may, however, be limited for several reasons. First, it may be questioned whether all possible relevant articles were detected. However, we searched the MEDLINE and CINAHL databases, made use of a combination of MeSH (indexing terms) and text words that covered a wide range of the research field, tried other search strategies too, and studied all publications initially selected by at least two of the three researchers, including publications without abstracts. We are therefore reasonably confident that we did not miss relevant publications that should have been included in this review.

Second, the review may possibly be subject to ‘publication bias’, implying that several existing follow-up care programmes and their evaluations might not have been described in the literature. Since we have got to know several follow-up programmes in practice that were not included in our study, we assume the presence of publication bias.

Thirdly, 18 out of the 24 publications included in this study were from the USA, two were from Canada,20, 28 two from the UK,17, 24 and two from Australia.22, 27 Therefore, the results cannot be translated to other countries. The obvious difference between the number of follow-up care programmes performed in the USA compared to those in other parts of the world, such as North-West Europe, may be explained by the fact that the content of follow-up care programmes in Europe might have not been communicated in English or German. Another reason for the high percentage of US follow-up care programmes may be the difference regarding the duration of in-patient rehabilitation. Since the duration of in-patient rehabilitation in the USA is relatively short, the need for follow-up care in the USA may be higher.

All this contributes to the most important conclusion of this review: there is a need for the development, the publication and the well-designed evaluation of follow-up care programmes for persons with SCI. We encourage rehabilitation centres, specialised in the rehabilitation of persons with SCI, to take the initiative to organise follow-up care, preferably in cooperation with primary care professionals and/or patient organisations. Since primary care professionals rarely have sufficient knowledge and experience about the specific care persons with SCI need (due to the low prevalence of persons with SCI), it is important that the expertise of specialised rehabilitation centres is in some way or another available for persons with SCI living in the community and that these centres should take the initiative in organising follow-up care. Cooperation with primary care professionals is preferable, since they are the persons first and foremost to deliver care at home. From our review we learned that follow-up care programmes vary widely with regard to aim and methods. To facilitate comparisons of design and results of such programmes, we propose a rough classification system, based on three dimensions:

  1. 1

    Classification according to the aim of follow-up care:

    • specific aim like preventing or treating one or more secondary complications;

    • generic aim like the promotion of quality of life, participation and community reintegration;

    • combination of the aims mentioned above.

  2. 2

    Classification according to the method of follow-up care:

    • preventive activities directly aimed at individual patients or patient groups;

    • therapeutic activities directly aimed at individual patients or patient groups;

    • activities aimed at the promotion of continuity of care;

    • combination of the methods mentioned above.

  3. 3

    Classification according to the localisation of the care:

    • at the patient's home;

    • in the rehabilitation centre;

    • both at the patient's home and in the rehabilitation centre making use of communication technologies;

    • combination of methods mentioned above.

With regard to the evaluation of follow-up care programmes we think it is important to evaluate the follow-up care with regard to its effectiveness (effects on the prevalence on secondary impairments). Furthermore, attention should also be paid to the effects regarding the efficiency (costs and health-care utilisation) and the effects on quality of care (satisfaction and continuity).