Systemic Lupus Erythematosus (SLE) is a condition that affects multiple systems in the body and is a pleomorphic disease, meaning inflammation, antibody production and complement-fixing immune complex depositions causes damage to the bodies tissue. SLE is caused by one’s genetic factors that are activated by medications, environment or an infectious agent that causes the immune system to respond in an abnormal manner. It occurs when suppressor T cells fail to defeat a foreign agent, defects within the signalling of cells, inadequate immune tolerance, the creation of autoantibodies and the loss of autoreactivity control. This results in the growth of B cells which causes autoantibodies and immune complexes to form which increase inflammation and tissue damage. There are many symptoms of SLE, many people with SLE can have different symptoms but have the same diagnosis. For example, SLE causes extreme fatigue, affects organs, anorexia, butterfly rash, ulcers, alopecia, hives and photosensitivity. (Wallace, 2008)
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Pain is a severe symptom of SLE and Annie has expressed her struggle with this symptom in particular. What Occupational Therapists (OTs) need to understand is that everyone experiences pain in different ways and that pain impacts each person differently. Therefore, the concept of pain is extremely complex to ‘assess’ as it is not a physical matter and it is completely individualized. The crucial stage of the client pain assessment is the initial interview. With Annie, an OT can explore her personalized in-depth experience with her pain and how it impacts her. Something that is more advantageous than a written questionnaire assessment that is far too broad to capture someone’s personal experience. (Mann & Carr,2009). It also enhances a therapeutic relationship, Annie can be assured that an OT is listening to her and can understand what she’s goes through. Therefore, it Is vital to dedicate time for this interview rather than rushing into providing unhelpful behavioural advice. During this interview an OT can guide their interview by exploring these aspects; a description of the clients pain- location and the severity of the pain, their response to the pain- do they see any change in their behaviours, attitudes, beliefs and or confidence and the impact of the pain on their life- how well are they functioning, are their leisure activities compromised. The Cognitive Behavioural Therapy Model (CBTM) is an effective assessment and treatment of pain. (Cole et al. 2005). It is a simply structured method where an OT would ask questions about the clients; thoughts, feelings, physical symptoms, behaviours and environmental factors. The CBTM addresses five aspects associated with life and that all interconnect and influence each-other. The model evaluates a client’s environmental factors which provide information on one’s personal life including their roles and responsibilities, level of support they receive and their physical environment- does it assist or worsen their disease. These targeted questions enable’s the therapist to identify the effects of the client’s pain in their lives and can highlight the problems which are contributing to the exacerbation of their pain. (Goodacre & McArthur, 2013).
Another important area to cover for Annie in terms of assessment would be a hand function assessment to see how much range of movement she has with her hands and how much the stiffness within her joints impacts her hand function. An OT may assess this area using ‘Jebsen-Taylor Hand Function Test’. The purpose of this assessment Is to assess a client’s hand function in an everyday scenario by demonstrating activities that require the use of hands. The time frame of this assessment is fifteen to twenty minutes for each hand. The assessment enables a comparison to be made against the norm to assess the effectiveness of treatment. The assessment requires the client to be in a seated position at a table. The assessment itself consists of seven tasks that are aimed to imitate functional hand activities: writing short sentences, turning cards, picking up objects, the imitation of feeding, stacking and picking up a variety of light and heavy objects. Scores are compared to with normative tables in relation to age and sex. Reassessments can be conducted in the future where their scores can be compared to measure either improvement or deterioration. (Jebsen, Taylor, 1969).
Another severe symptom of SLE is fatigue, a symptom Annie has expressed is a debilitating aspect of her disease. An OT could conduct a ‘Fatigue Assessment Inventory’. This assessment is a self-reporting scale that the client fills out themselves. The purpose of this assessment is to measure fatigue in clients who are diagnosed with chronic diseases. This assessment can also be used to evaluate the possible triggers of fatigue in peoples lives or specific situations that may enhance the fatigue. The assessment mainly focuses on those with chronic diseases such as Lyme disease, multiple sclerosis, chronic fatigue syndrome and systemic lupus erythematosus. The time frame for this assessment is between five to ten minutes. There is no specific setting or position, however a pen and paper required to fill out the self-report. It includes twenty-nine items scored on a 7-point Likert scale with responses ranging from 1 (completely disagree) to 7 (completely agree). Each section is related to fatigue, tiredness, lack of energy or total body giving out. Higher score indicates greater and high levels of fatigue. (Shwartz, Jandorf & Krupp. 1993).
Annie has advocated the extreme implications that her symptoms of SLE have had on her daily activities and has expressed feelings of isolation due to this. It is vital for an OT to address the matter of Annie’s lifestyle and occupational factors. ‘Physical Rehabilitation in Arthritis’ has addressed this issue. Due to the chronic nature of this disease it greatly impacts daily tasks such as eating, dressing, walking, meal preparations, personal care, work commitments and leisure. The importance of energy conservation and joint protection is seen throughout. Damages, deformities and inflammation to joints are the main contributors to pain however the energy used to complete their daily tasks can add to the extremity of fatigue and weakness. Therefore, client’s challenges and limitations to their daily routine should be minimized through alternative measures such as using assistive devices. The use of assistive devices is an essential tool for Annie as she describes herself as a ‘mother and proud housewife’ so these household devices can assist her in completing household jobs, thus enhancing her occupational performance and making her role more accessible. The use of such devices allows clients to gain personal control over their disease while providing them with a sense of empowerment. In general, assistive devices are supposed to be lightweight, easy to use, enable independence, overcome limitations with joints and used to compensate for muscle weakness. Examples of assistive devices that would benefit Annie would be assistance in self-care; long handled shoe horn to limit bending and using fine hand grip for putting on shoes and grab bars in the bath to assist with safety entering and exiting the bath. Meal preparations; double finger mugs that reduce the amount of stress displaced on thumb and finger joints by distributing the weight along the index and middle finger. Also, built-up grips on cooking utensils to enlarge the grip grasp used. Home maintenance; long handled dust-pan. Leisure; adapted tools for gardening or book holders.
Energy Conservation Techniques are also essential to reduce fatigue. An OT should advise their clients on these strategies to reduce their fatigue. This is especially important for Annie’s case as fatigue is a severe symptom that hinders her daily routine. It simply consists of modifying schedules and activities performed. For example, planning-ahead and prioritizing certain activities and tasks, perform tasks while seated, take regular breaks when completing activities, limit excessive reaching, gripping or bending that may irritate joints and use proper body positions and equipment to eliminate stooping, bending and reaching. (Walker & Helewa, 2004).
A research article named ‘Effectiveness of Occupational Therapy interventions for Adults with Systemic Lupus Erythematosus’ explores the role of occupational therapy related interventions for adults with SLE.
The method consisted of two different research areas exploring the effectiveness of physical activity and psychoeducational interventions.
Physical Activity intervention consisted of three subgroups; Supervised Aerobic training consisting of exercise on a treadmill and on a bike, Supervised Aerobic training with homebased exercise program and finally a homebased exercise program alone which included a ‘Wii fit’ exercise program. The results of the physical activities showed improvements with depression, fatigue, tolerance for exercise and function and showed no exacerbation of their disease.
Psychoeducational intervention consisted of two subgroups; Education and Self-management including SLE patients and their partners which examined various interventions including communication, coping, social support, fatigue, self-efficiency, mental health and physical function. The other aspect explored was Cognitive-Behavioural Therapy (CBT) this examined the success of CBT interventions. Cognitive techniques are used in CBT to help people become more aware of their negative ways of thinking and their way of responding to challenging situations in a more effective and responsible way. The results of CBT in particular-showed great reduction in pain, symptoms of depression and in stress levels.
Overall psychoeducational interventions showed benefits in coping skills, fatigue, social support and in couples communication, resulting in overall positive effects of cognitive functioning. The conclusion of this article illustrates the effectiveness of the occupational therapist’s role in managing SLE as the findings of this research indicate moderate evidence that support the benefits of physical activity and psychoeducational interventions, however they suggested that further investigation is needed in occupation- based interventions. (Poole, Bradford & Siegel, 2019). These kinds of interventions would be very suitable for Annie as she suffers from pain and fatigue that affects her daily activities. The psychoeducation program, including couple’s communication, may alleviate a lot of stress for Annie as her husband may become more educated and involved in her rehabilitation.
Annie describes difficulty with her painful and swollen joints, compression gloves would be a suitable intervention plan for Annie as these gloves are responsible for tackling pain, stiffness, swelling and improving hand function. Compression gloves are routinely provided by occupational therapists to those with various forms of Arthritis to reduce the severity of these symptoms. A study was carried out to determine the effect of these gloves with Rheumatoid arthritis, a disease that has similar symptoms to SLE. The study examined the effectiveness from beginning to end use of these gloves which compared their symptoms from before to after. Participants from this study were recruited from rheumatology units. Participants wore left or right Isotoner gloves that were worn day and or night. Occupational Therapists (OTs) completed assessments at week zero and four. These assessments examined hand pain during activity, swelling; measuring joint circumference, measure of activity performance- hand and grip ability test. The results were collected after the four weeks of wearing the compression gloves. The results were compared from week zero to week four showing a decrease in all aspects from pain during activity, pain at night, hand stiffness and swelling; decrease in finger circumference. The conclusion of this study states that the use of compression gloves led to an extreme improvement’s in these symptoms. (Hammond et al, 2015).
According to the NWCOTSS-R glove eligibility, Annie fits the criteria for the provision of wearing compression gloves and she states experiencing joint pain and swelling that affects her daily activities. To determine the correct glove size an OT must measure the circumference of the second and fourth metacarpophalangeal joints in extension using a paper measuring tape. The glove should be a snug, not tight fit. An OT should pinch the sides of the gloves to ensure adequate room for excessive swelling if the disease flares up to allow for expansion. An OT should provide important guidelines about the use of these gloves, for example, the gloves should not be worn 24 hours a day- at the beginning one should wear them for short periods to get used to them, remove gloves when washing hands, only wear the glove on the prescribed hand. Caution is also advised, you should contact your OT and discontinue wearing the gloves if there’s signs of numbness, feel too tight, sleeping disruptions or causing skin irritations. OTs should also inform their client that gloves can be slippery and may not be appropriate for driving. (Jones, Hammond, Yeliz, 2013).