Case #4 – Complex Case – Musculoskeletal, Episodic, Cardiorespiratory

Presenting Problem / Background

The rehabilitation professional (OT or PT) has seen Stella in her home once every 2 weeks to monitor the treatment program and re-assess her progress. At 6 weeks post knee replacement, the rehabilitation professional returns to see Stella for re-assessment and re-evaluation of goals.

Subjective

Stella is recovering well from her total knee arthroplasty and is now ambulating independently without an aid. She is able to negotiate stairs but continues to get short of breath climbing one flight of stairs. She considers herself fairly healthy, except for the longstanding fatigue she often experiences, which makes it difficult for her to carry out her day-to-day household activities (especially on days when she volunteers). Stella’s friend is no longer staying with her but continues to drop in weekly to help out with any groceries or cleaning as needed.

Despite her knee feeling better, Stella reports experiencing many fluctuating “good days” living with HIV, but occasionally has some “bad days” when she wakes up feeling unable to even get out of bed. On these days, she finds it difficult to get around her house, feeling very weak and exhausted, and unable to make it to the store to shop for groceries. During these times, she is unable to attend her daughter’s college basketball games due to fatigue. On these days she barely manages to make a meal for herself and her daughter. She is reluctant to ask for help from her daughter around the house because she “doesn’t want to interfere in her life”. Her daughter is currently healthy but Stella worries about what might happen to her in the future if her HIV status deteriorates. At times she finds herself feeling down, isolating herself from others, and worrying about the uncertainty of her future.

On the “good days”, Stella cleans her house entirely from top to bottom, without any rest breaks. She reports that this helps her feel “productive” and “alive” by cleaning and ensuring that her daughter lives in a safe and clean house. However, at the end of these “cleaning binges”, Stella finds herself completely exhausted, requiring 1 to 2 days to recover in bed.

Stella has experienced some changes in her body composition (lipodystrophy) due to the previous use of older antiretroviral medications – she gained weight in her trunk area, developed a buffalo hump at the back of her neck and has apparent wasting below her cheekbones (Grade 3 on the Carruthers Facial Lipoatrophy Severity Scale). She tells you that she is embarrassed by her appearance and is fearful that others will know that she is HIV positive. She has become more and more reluctant to get out and interact with others, fearing stigma and discrimination she may experience from others due to her HIV status.

Stella is considering returning to work, as she is finding it more and more difficult to provide for her family solely on provincial income support funding. However, she is unsure whether she can handle full-time work, and is unsure where to begin her pursuits given she’s been out of the workforce for 15 years.

She is concerned about the gap in her resume, her age, and is hesitant to disclose her HIV status to potential employers for fear that she may be discriminated against.

Guiding Questions

1. What are some of the (a) impairments, (b) activity limitations and (c) participation restrictions that Stella is currently experiencing?

Notes: Consider the physical, cognitive, social, emotional and psychological challenges faced by Stella and classify using the ICF Framework. Keep in mind how her disability is fluctuating and episodic in nature – characterized by unpredictable periods of wellness and illness (good days and bad days).

Some examples might include:

• Impairments: fatigue, shortness of breath, weakness, diarrhea, nausea, emotions – fear, isolation, worrying about the future – anxiety, body composition changes related to lipodystrophy.
• Activity Limitations: difficulty carrying out day-to-day activities, meal preparation, decreased mobility.
• Participation Restrictions: difficulty/barriers in returning to paid work, financial challenges, potential stigma and discrimination, decreased community or social interaction with others.

Notes: Consider the ups and downs that come with living with HIV and the uncertainty that Stella may be experiencing. An added difficulty is the fear of returning to work – what happens if she returns to work, gives up her provincial funding support and gets sick again and has to leave work again? Is there the potential of having difficulty getting back on income support if needed? She is also concerned about the time gap on her resume – how does she explain being out of the workforce for so long, especially if she is reluctant to disclose her HIV status to potential employers? On “good days” Stella appears to “overdo it” when cleaning the house, which then causes her to need a couple of days to recover. The unpredictability of living with HIV can affect many life decisions such as returning to work, buying a house, or starting a new relationship.

2. What added complexity does Stella’s concurrent health conditions have as she ages with HIV on her overall health?

Notes: Consider concurrent health conditions such as osteonecrosis, COPD (and potential for future exacerbations), PCP pneumonia a few years ago, peripheral neuropathy, potential for other concurrent health conditions such as cancer (e.g., lung), cardiovascular disease, and health challenges related to menopause. With aging, what are the implications for her returning to the workforce – might she consider retirement in the future? What are the implications for income support?

3. What additional factors should be considered?

• Review sleep and rest /stress management. If required, follow up with a pamphlet, discussion or referral for good sleep hygiene.
• Determine compliance with medications (HIV and other). Adherence may be improved with blister packs or a record-keeping technique (e.g., phone alarm).
• Concurrent health conditions of peripheral neuropathy and COPD; the potential for further concurrent health conditions as Stella ages with HIV (e.g., lung cancer, cardiovascular disease, osteoporosis, osteoarthritis).

4. What are some of the rehabilitation goals for Stella?

Notes: Consider patient values and preferences, and principles of shared decision-making, when discussing and developing goals. Use the SMART principle.

1. To be able to manage fatigue by structuring her schedule using principals of pacing and prioritization within the next 2 weeks.
2. To attend a group exercise program a minimum of 2 times per week.
3. To better understand the episodic nature of her concurrent diseases and the strategies that can be used to live with day-to-day variations in health.
4. To link to an HIV support organization to receive support in dealing with body composition changes.

5. What are some of the potential treatment strategies that might be used to address Stella’s impairments, activity limitations and participation restrictions?

Notes: Consider patient values and preferences as well as key medical issues when discussing treatment strategies. Consider using the process of shared decision-making to prioritize treatment choices/strategies, and provide rationale. It is important that the strategies used to address Stella’s challenges take into account the ICF. By setting goals that address her impairments, this can lead to improvements in her activity limitations and participation restrictions. Consider living strategies that Stella might use to prevent an episode of disability or reduce the severity of an episode. Stella may be a good candidate for an exercise program of combined aerobic and progressive exercise –look to systematic review evidence demonstrating the safety and beneficial effects of exercise for adults living with HIV – be sure to consider the FITT (Frequency, Intensity, Time, Type) principle, progression of intensity of exercise, potential access to community gym centres, level of supervision required, and factors that will support sustainability and adherence to an exercise program. Also, consider principles of prioritization on days when feeling fatigued; education on being “balanced” with her activity (for example, reducing cleaning binges, etc.)

Record keeping (e.g., tracking of exercise, medications, and other self-management techniques) may help Stella to maintain her goals. Since Stella tends to do too much on ‘good days’, suggest that she set only one goal for the day. Additional strategies may include keeping a daily reflection record, especially to identify items for discussion at the next healthcare appointment. All clients should also be encouraged to engage in some type of cognitive activity (e.g., reading, word games, or games on their cell phone). Mindfulness strategies (for example, mindful meditation) may help Stella to manage her symptoms, stress and uncertainty.

6. What kind of educational health promotion, prevention, care, treatment and support materials or information might you provide for Stella?

Notes: Stella would benefit from reviewing the practical guides and booklets published online by CATIE, particularly the resources that address HIV and aging, emotional wellness, nutrition and recommendations for living healthy with HIV.

7. What other health or social services might Stella also benefit from having access to? Why?

Notes: Identify other services and providers that might help to address Stella’s impairments, activity limitations and participation restrictions. Consider how you would go about referring to the other service providers and services. Consider the potential barriers that Stella might encounter attempting to access these services.

• Referral to a CBHO may also be beneficial.
• Referral to local vocational services where available.
• Stella may benefit from a referral for home assessment by an OT (if not already received).
• The episodic nature of HIV is a particular factor to consider in this case when approaching intervention strategies and self-management.
• Consider the ethics for disclosure of HIV status when referring to other disciplines or services.

8. What issues might Stella need you to help her advocate for?

Notes: Stella may need your assistance to access rehabilitation at an outpatient facility (healthcare centre, outpatient hospital clinic). She may also need support to explore her ability to return to work or to begin thinking about a future transition into retirement.

9. You plan to discharge Stella from your caseload. Discuss what your discharge plans might be.

Notes: Consider her recent arthroplasty, bilateral peripheral neuropathy, COPD and risk for future pneumonia, as well as the episodic and unpredictable nature of HIV. Are there any long-term rehabilitation programs that Stella could contact if she has an episode of disability after her discharge?

Medical Management – Infectious Disease Specialist Recommendations

Assessment: Stella is living with HIV but also living with a number of other complicating medical comorbidities that are contributing to her difficulty managing. She requires a full assessment of each of these issues in order to truly optimize her function at home.

Plan:

• Optimization of COPD: Ensure patient is on appropriate puffers, has recent pulmonary function tests, and link up with a COPD outreach program and/or pulmonary rehabilitation. Given her smoking history and HIV status, she should also be evaluated for cardiac dyspnea with a thorough history and echocardiogram.
• Given her decreased BMD ensure supplementation with vitamin D, calcium and bisphosphonate therapy.
• Peripheral neuropathy: Patient should do daily foot checks and see a podiatrist to be fitted with appropriate footwear to avoid development of neuropathic ulcers.
• If Stella’s condition persists, refer to a community psychologist to discuss worries and issues. Stella may then benefit from cognitive behavioural therapy or initiation of medication.
• Explore local options to obtain increased funding for Stella and her family if return to full-time work is not a likely possibility.