Extended Occupational Therapy Reintegration Strategies for a Woman With Guillain-Barré Syndrome: Case Report

Machiko R. Tomita; Kathryn Buckner; Sumandeep Saharan; Kimberley Persons; Sheng Hui Liao

doi:10.5014/ajot.2016.017871

Abstract

This case report describes a unique long-term functional recovery process to promote successful community reintegration for a woman with Guillain-Barré syndrome (GBS), a rare autoimmune disease. Her main symptoms were very limited mobility and depressive symptoms due to the unknown cause of and cure for the illness. Holistic occupational strategies helped the client stabilize her emotional state, create a safe home environment, improve a communication method, increase physical activity, and promote social participation. Participation in a fall prevention clinical trial lowered her risk of falling; at 9 mo, she reached 75% of the maximum Social Integration score; at 13 mo, she reached near-normal level for activities of daily living (ADLs) and her fastest time for the Timed Up and Go test; and at 2 yr, she achieved a 100% score in instrumental ADLs. For community integration of clients with GBS, a comprehensive strategic self-management approach should be prescribed for long-term recovery.

Guillain-Barré syndrome (GBS) is a rare autoimmune disease with no known cure and no established treatment that often requires a long period of recovery (National Institute of Neurological Disorders and Stroke, 2015). A search of research articles on GBS in Medline Plus (2015) revealed no studies on the long-term treatment of and community reintegration process for patients with GBS. This case report provides a unique description of the complete treatment process and efforts toward community integration beyond a typical occupational therapy intervention period.

GBS damages the myelin sheath that wraps around nerve axons and causes a nerve conduction block, leading to muscle weakness and pain or paralysis of the whole body (Ang, Jacobs, & Laman, 2004). The incidence of GBS increases with age and is about 4 per 100,000 in people older than 75 yr (Pithadia & Kakadia, 2010). Infections often precede the onset of symptoms, and treatments such as plasma exchanges or intravenous immunoglobulin infusions alleviate the symptoms (American Association of Neuromuscular and Electrodiagnostic Medicine [AANEM], 2016). Approximately 50% of those diagnosed return to normal health by 1 yr, but almost one-third continue to have some muscle weakness even after 3 yr (AANEM, 2016). Therefore, occupational therapy treatment should target achievement of the functional recovery goals within 1 yr.

Clinical Findings and History

Winnie, a 72-yr-old single, retired Caucasian woman with a high school diploma who lived in a single home in a suburb with her dog, had lost mobility after the sudden onset of acute inflammatory demyelinating polyradiculoneuropathy, a form of GBS. In August 2011, she started having pain and swelling in her lower extremities and hands. Her pain increased, and she had trouble walking even when taking painkillers. Because of severe pain and a sore on her coccyx, she went to an emergency room, where she was admitted to a hospital for 18 days and diagnosed with peripheral neuropathy. She received iron for low hemoglobin and intravenous immunoglobulin for a suspected viral infection and autoimmune system response. The pain and swelling started improving during the hospital stay.

After hospitalization, Winnie stayed for a month in a subacute facility, where she received occupational and physical therapy twice a day, 7 days a week. She learned how to complete activities of daily living (ADLs) and instrumental ADLs (IADLs), such as safe transfers from her wheelchair to a shower chair and into a car. She worked on building her endurance and practiced climbing stairs. She started moving her lower extremities but had sensation loss in her legs and feet. On discharge, she was told that she would be wheelchair dependent for the rest of her life, so she sold her house and car and put up her dog for adoption to move into an accessible senior apartment. In November 2011, at a neurological center, she received a diagnosis of GBS and was told that she would have a 6- to 18-mo window for making progress. We became involved in January 2012 for 19 mo.

Theoretical Framework

In this study, we used the Person–Environment–Occupation (PEO) Model (Law et al., 1996) to help Winnie set goals. We aspired to find a fit among Winnie’s needs, roles, and abilities (person); her chosen purposeful activities (occupation); and the contexts in which these occupations take place (environment). Her long-term goal was full community reintegration. To meet the goal, we mainly used a consultative model. According to this model, occupational therapists use their expertise to “provide training and education, identify resources, and facilitate relationships” between the client and community resources (Holmes & Leonard, 2014, p. 1090). Although the consultative process follows the occupational therapy process of evaluation, intervention, and targeting of outcomes (American Occupational Therapy Association, 2014), the therapist uses his or her expertise to develop strategies for the client but is not directly responsible for the process and, therefore, outcomes, partly because contact periods are short. As a result, the outcomes depend heavily on the client’s willingness and determination.

Initial Assessments

Winnie’s two-bedroom apartment was on the first floor of a senior complex. Community rooms for congregate lunches and group exercise were available in a separate building. Her mailbox was located about 80 ft from her apartment.

The initial assessments covered the following areas:

Occupational profile, including short- and long-term goals
Emotional state using the Center for Epidemiology Studies Depression Scale (CES–D; Radloff, 1977)
Functional status, including IADLs using the Older Americans Resources and Services (OARS) Multidimensional Functional Assessment of Older Adults (Fillenbaum, 1988), ADLs using the FIM™ (Granger, Hamilton, Keith, Zielezny, & Sherwin, 1986), and functional mobility using the Timed Up and Go test(TUG; Podsiadlo & Richardson, 1991)
Home hazards that may cause falls using the Home Safety Self-Assessment Tool (HSSAT; Tomita, Saharan, Rajendran, Nochajski, & Schweitzer, 2014)
Communication technology usability
Community integration using the Social Integration subscale of the Community Integration Questionnaire (CIQ; Willer, Rosenthal, Kreutzer, Gordon, & Rempel, 1993).

Psychometric properties of all assessment instruments had been established. The CES–D has adequate test–retest reliability (r = .741–.781) for White respondents (Roberts, Vernon, & Rhoades, 1989) and adequate interrater reliability (r = .597) for community-dwelling older women (Bassett, Magaziner, & Hebel, 1990). The OARS–IADL has high concurrent validity (r = .65–.85) with the Functional Autonomy Measurement System and high interrater reliability (intraclass correlation coefficient [ICC] = .865; McCusker, Bellavance, Cardin, & Belzile, 1999). Higher scores indicate higher levels of independence. The FIM has excellent test–retest reliability (ICC = .98) for older adults (Hobart et al., 2001). The TUG has excellent intra- and interrater reliability in community-dwelling older adults (ICC = .92–.99; Steffen, Hacker, & Mollinger, 2002), and various cutoff points for different conditions have been identified. The HSSAT has excellent test–retest reliability (ICC = .97) and discriminant validity with fear of falling (r = .10; Tomita et al., 2014). The CIQ has excellent test–retest reliability (ICCs = .83–.93; Zhang et al., 2002).

Winnie’s CES–D score was 18 of 60, indicating mild to moderate depression. Her total FIM score was 112 of 126, indicating assistive technology use or slow speed in performance of many daily activities. The deficits were mainly attributable to the use of assistive devices, including using grab bars and a tub transfer bench for toilet and bathtub transfers, walking with a rolling walker 100% of the time, wearing bilateral ankle foot orthoses for drop foot, and requiring assistance in using stairs. Her OARS–IADL score was 12 of 14, indicating the need for assistance with housework and transportation. The time for the TUG was 17.9 s, indicating a risk of falling while ambulating, which was her major concern.

We identified 11 fall risk factors in her home, including potted plants in the living room and pots and pans stacked on the kitchen counter. Additionally, the front door of the building closed too quickly, and the base of her quad cane was too small to provide secure stability.

We also assessed communication technology for her to visually communicate with her sister. The download connection was slow, <1 megabit per second (Mbps). She scored 3 of 12 on the Social Integration subscale of the CIQ, indicating a very low level of social integration.

Winnie’s long-term goal, full community reintegration, included going shopping by herself, participating in leisure activities, visiting or inviting friends and relatives, joining group exercise, and doing volunteer work. We prioritized five goals in the order of urgency: (1) improve her emotional state by enabling social communication, (2) create a safe home environment by educating her to increase mobility and prevent falls, (3) improve communication technology by referring her for technical assistance, (4) promote mobility and functional capacity by encouraging therapeutic exercise and safe physical activities, and (5) enhance social participation by encouraging her to find opportunities to participate.

Strategies, Interventions, and Outcomes

This study was 19 mo long and consisted of two phases. In Phase 1, which lasted 4 mo, we observed whether Winnie improved or sustained her status between Visit 1 (initial evaluation) and Visit 5 in four short monthly follow-up assessments (Visits 2–5). During Phase 2, 10-mo participation in a university’s clinical trial aimed at reducing fall risks, we assessed her 3 more times (Visits 6–8).

Phase 1

Visit 2.

Winnie’s CES–D score improved to 8, no longer indicative of depression (Goal 1). Home hazards were cleared, and shelves were added to the kitchen pantry, making reaching things easier (Goal 2). She upgraded her cable subscription to 3 Mbps and installed Skype on her computer (Goal 3). For mobility, she used a walker and wore orthotics. An occupational therapist provided her with a pedometer, and Winnie walked 850 steps daily in January and 1,644 at the first follow-up session (Figure 1, step changes). She started using a new quad cane with a wide base indoors and used a rolling walker outdoors at all times. Winnie’s TUG time improved by 2 s from the initial assessment (see Figure 1). Her Social Integration score was 5 of 12 (Figure 2). For the next month, Winnie decided to increase her daily walking steps and involvement in group exercise offered by the apartment facility to achieve Goals 4 and 5.

Figure 1.

Average number of walking steps per day and TUG times in seconds.

Note. TUG = Timed Up and Go test.

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Figure 2.

Scores on the FIM™ and SI subscale of the Community Integration Questionnaire.

Note. SI = Social Integration subscale.

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Visit 3.

Winnie had been attending a 20-min exercise class in the community room. She proudly showed us a member T-shirt. Her TUG time was 13.0 s. She doubled her walking steps from the previous month. To our surprise, she started walking very slowly on a treadmill in the community room. Her FIM score improved by 4 points (see Figure 2). She had arranged for a friend to give her a ride for errands. For the next session, she decided to continue her efforts. Her Social Integration score was 6 of 12.

Visit 4.

In late March, Winnie hit her toe, inducing a bacterial infection that seemed to hinder her progress and required antibiotics. Nevertheless, she began to have sensation in the dorsal surface of her left foot. Her TUG time was 10.7 s, which indicated no risk of future falling. Her function improved. She vacuumed her apartment in 1.5 hr, walked to the mailbox daily, and removed the trash by herself. She had used a van service to see movies with her friends and was pleased with its affordability and convenience. She set a new goal to increase her use of the quad cane. Her Social Integration score remained at 6.

Visit 5.

Between Visits 4 and 5, Winnie’s sensation returned in both feet, and she no longer needed orthotics for foot drop. She was occasionally using a quad cane indoors and always outside. Impressed with herself, Winnie cleaned the apartment in 45 min. Her IADL score was 13 of 14, and her FIM score improved by 7 points in 4 mo. Her daily walking steps increased to 3,844. She was planning to use the van service to attend a concert with a friend, showing continuous, steady progress in social participation. Her Social Integration score rose to 9 of 12. At 9 mo after the onset of GBS, we concluded that her short-term goals were achieved and that she could achieve her long-term goals if she continued her efforts to improve mobility, function, and social participation. We believed her strong determination would make it possible.

Phase 2

Visit 6.

Four months after Phase 1 ended, Winnie’s IADL, FIM, and Social Integration scores remained the same. She needed assistance with transportation and assistive devices to complete ADLs, but she was not using a mobility device constantly. Her TUG time was 8.3 s. Her balance confidence, measured by the Activities-specific Balance Confidence Scale (ABC; Powell & Myers, 1995), was 76.6%, indicating she had some fear of falling. Lower-extremity muscle weakness was still a concern, so we referred her to the Virtual-Group Exercise at Home (V–GEAH) program offered by a local university. She was randomly assigned to a treatment group and participated in the program.

Program participants did progressive resistance and balance exercise at home following an exercise instructor on a large computer screen. Winnie was connected with six other exercisers online and was monitored by the research group for safety. The sessions were offered three times a week for 6 mo, and each session lasted 30–40 min. Every week, the exercise progressed in the number of repetitions and level of resistance, changing type and strength of equipment, such as from a red stretch band (weak) to silver (very strong) and from 2.5-lb ankle weights to 10-lb weights. The difficulty of the balance exercise also increased, such as from walking a straight line using a hand support to full tandem work without hand support.

Visit 7.

After participating in 70 V–GEAH sessions, Winnie’s IADL score was still 13, but her FIM score improved to 123 of 126. Her balance confidence score increased to 91.9%, indicating no fear of falling. The improvement in her muscle strength ranged from 10% to 148% for different muscle groups and to about 100% for endurance. She reported that she no longer had weakness or balance problems. Her Social Integration score was 10 of 12.

Visit 8.

Three months later, Winnie’s IADL score reached a perfect 14, and her FIM score remained at 123 because of the use of grab bars for safety. Her TUG time was 8.8 s, and her balance confidence score was 91.3%. She wanted to drive again and made an appointment for a driving skill assessment with a local hospital. Her Social Integration score was 10 of 12. We considered her long-term goals to have been completely achieved.

Discussion

This successful case of community reintegration for a woman with GBS involved many factors: a strategic holistic approach, short-term achievable goals, availability of emotional and appraisal support, referral to useful community resources, a caregiver (her sister) who constantly encouraged her to become independent, and, most important, Winnie herself, a determined and resilient person. The first goal in treatment, based on the PEO Model, was to alleviate her depression by providing emotional support and encouragement through sharing her progress. The second goal was to improve her home environment by removing hazards that might cause falls, creating space for improved mobility, and updating her communication technology to allow visual communication with her sister. The third goal was mobility improvement; an occupational therapist suggested appropriate assistive devices and increased physical activities and encouraged her to use therapeutic exercise taught to her by a physical therapist. A pedometer facilitated an increase in walking. The fourth goal was increasing social participation, which included joining an exercise group in her facility and going places using van services. The final goal was to reduce her fear of falling to help prevent falls.

The PEO Model was an appropriate approach that provided a necessary framework for the consultation model used in this study. Winnie was provided with consultations to modify her environment, methods to grade or adapt her occupations, and ways to improve her performance skills. In the end, even with long-term contact with an occupational therapist, clients are still responsible for their process and outcomes.

Critical time points in Winnie’s improvement were as follows:

At 8 mo after the onset of GBS, when Winnie’s risk of falling reached a low level (TUG time of 12 s)
At 9 mo, when she reached the score of 9 of 12 on Social Integration
At 10 mo, when she regained sensation in her foot
At 13 mo, when she reached her second highest FIM score, 122, and best TUG time, 8.3 s.

Winnie’s major functional recovery took 13 mo, which was the middle of the range (6–18 mo) in which her health care providers said she could improve her mobility. Functional status and social integration further improved afterward while she was doing home exercise, and about 2 yr from GBS onset Winnie reached 100%, complete independence, in IADLs. At 33 mo after the onset of GBS, Winnie was driving her own car, doing Tai Chi and group exercise, and still performing the 24th-wk V–GEAH exercise using ankle weights. In addition, she was walking in the community room with a person with stroke who was encouraged by her healthy behavior and had not missed a day in 8 mo. She was doing volunteer work once a week and achieved a perfect score on Social Integration. She looked fit and was happy and proud of her ability to help her walking companion improve his mobility.

A limitation of the study is that we cannot say at what time Winnie achieved community integration because of the unavailability of an appropriate measurement instrument for older adults. Current instruments are made for people with traumatic brain injury and may not be suitable for older adults. In addition, with increasing use of new social media such as Skype, Facebook, and Twitter, the traditional definition of social integration may be changing.

Implications for Occupational Therapy Practice

The results of this study have the following implications for occupational therapy practice:

The holistic nature of the PEO Model provides occupational therapy practitioners with a framework for guiding interventions to find the best fit among a client’s needs, roles, and abilities (person); chosen purposeful activities (occupation); and the contexts in which these occupations take place (environment).
Using a consultative model of practice beyond the initial acute phase of rehabilitation can lead to successful community reintegration.
Occupational therapists can empower clients to take responsibility for their own rehabilitation process, providing a sense of control over their own outcomes. This may result in greater client participation in the intervention process and lead to better outcomes.

Conclusion

In current practice, occupational therapy practitioners usually do not have as extended contact period with their clients as we had in this study. This type of follow-up can be an important new role for occupational therapy practitioners to prevent avoidable disability in older adults. Because maintaining function is now eligible for Medicare coverage, improving function should ideally be qualified for reimbursement even over a longer term. When a client is discharged from a rehabilitation facility or home care, if an occupational therapist can provide a list of what the client should do and in what order, along with reliable community resource referrals and follow-up, the client will have a higher chance of achieving his or her goals and avoiding a move to a long-term care facility. Such services are increasingly necessary as the number of older adults who wish to continue living in the community increases. This case report provides an example of the successful use of this approach; each client’s goals and interventions will vary.

Acknowledgment

This study was partially funded by the Health Foundation of Western and Central New York.

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Figure 1.

Average number of walking steps per day and TUG times in seconds.

Note. TUG = Timed Up and Go test.

Full Size | Slide (.ppt)

Figure 2.

Scores on the FIM™ and SI subscale of the Community Integration Questionnaire.

Note. SI = Social Integration subscale.

Full Size | Slide (.ppt)