ACR On Air: Occupational Therapy Hones in on Making Daily Activities Easier

A female doctor holding paper people, focus on the hands; Shutterstock ID 85037632

Editor’s note: ACR on Air, the official podcast of the ACR, dives into topics important to the rheumatology community, such as the latest research, solutions for practice management issues, legislative policies, patient care and more. Twice a month, host Jonathan Hausmann, MD, a pediatric and adult rheumatologist in Boston, interviews healthcare professionals and clinicians on the rheumatology front lines. In a series for The Rheumatologist, we provide highlights from these relevant conversations. Listen to the podcast online, or download and subscribe to ACR on Air wherever you get your podcasts. Here we highlight episode 70, “Partnering with Your Occupational Therapist,” which aired on Feb. 13, 2024.

When Cheryl Crow was diagnosed with rheumatoid arthritis (RA) in 2003 while in college, she did not know she would eventually work as an occupational therapist based in the Seattle area. In fact, she didn’t know that occupational therapy could play a role in helping those with arthritis.

Ms. Crow

“In a short period, I went from being athletic and healthy my whole life to … one sprained finger and then rapidly losing weight and muscle mass. It was not a typical RA presentation at first—until it was,” Ms. Crow told Dr. Hausmann in an episode of ACR On Air.

Eventually, the experience helped shaped her passion for those who are newly diagnosed. But what actually led Ms. Crow to occupational therapy as a career was a desire to help children with developmental disabilities, including those with autism, Down syndrome and cerebral palsy. While in occupational therapy school, she learned many tools and adaptations to help with fatigue and pain caused by RA. At that time, she also gained a better understanding of RA as a systemic disease, affecting one’s health beyond a patient’s joints.

Ms. Crow has merged the worlds of occupational therapy and RA by founding Arthritis Life LLC, which includes a blog, podcast, self-management and support group programs, and  social media outreach all focused on helping people with arthritis live life to the fullest. She also created a comprehensive self-management program called Rheum to THRIVE, which provides rheumatic-disease specific lessons on how to manage pain and fatigue, navigate relationships, cope with emotional ups and downs, and perform the many executive functions required for complex chronic illness.

Occupational Therapy for Rheumatology

With more of a spotlight on physical therapy, Dr. Hausmann said, there may not always be a clear understanding of what happens in occupational therapy. Although there is some overlap with physical therapy, occupational therapy has many other components.

“I like to rename us life skills therapists,” Ms. Crow said.  “Occupational therapists help people who are having difficulty functioning in their daily life,” for examples, she mentioned having difficulty cooking or performing their jobs, “whether that [difficulty stems] from a mental health condition, [such as] schizophrenia …, or if it’s from arthritis or another physical disability.”

Occupational therapy considers the person as a whole with a focus on how they interact with their environment vs. focusing on just one body part, such as the hands—although some occupational therapists are hand specialists.

When meeting with patients for the first time, an occupational therapist typically asks, “Walk me through a day in your life. What’s going well, and what’s not going well?

“We are very detail oriented, so we will make a goal that is ridiculously specific,” Ms. Crow said. One example: A patient may mention they can’t turn a page in a child’s book while reading to them. An occupational therapist will drill down to determine if it’s a physical impediment and if it’s something the person can or cannot control. Next, they will look at solutions, such as improving hand strength or implementing adaptations or life hacks, such as holding the book differently, getting a bigger book or switching to an e-reader.

Another example: Ms. Crow described the goal of a female patient with RA who wanted to independently use wrist splints as needed to participate in activities of daily living, identify adaptive equipment and strategies to use during childcare, and create a schedule to set the pace and priorities for household and childcare activities.

“We are really life skills detectives and help people with the minutiae of their life,” she says.

Referrals to Occupational Therapy

When should a rheumatology patient be referred to occupational therapy? Ms. Crow said the answer is simple: Refer if a patient is having difficulty functioning in their daily life and performing their required activities. These activities include the basic activities of daily living, such as using the bathroom, cooking or self-care. They also include the more complex activities of daily living, such as health management and maintenance, which includes tracking symptoms, making healthy lifestyle choices and managing the job of being a patient with chronic illness.

Ms. Crow has had rheumatologists tell her at meetings that they don’t refer to occupational therapy as often because current medications have reduced or eliminated the more severe hand deformities that used to plague patients with RA. However, she passionately made the case for rheumatologists to consider the full context of a patient’s life and how their diagnosis may affect their functioning beyond their joints.

“Someone’s ability to function is not only dictated by the severity of their disease; it’s dictated by the environmental and contextual demands of their life. … Just because your patient’s bloodwork may look good and they don’t have severe deformities, doesn’t mean [their condition] doesn’t have a [negative] impact on their quality of life,” she said.

When referring patients to occupational therapy, rheumatologists should make a note in the referral about what the patient is struggling with. Another suggestion is to write, “Help with activities, daily living or joint production strategies or tools to decrease pain.”

Still, the occupational therapist will do a detailed interview to find out how to best help the individual in their personal context, the demands of their daily life and the degree of support they currently have.

Children

When asked about how occupational therapy can help children with rheumatic conditions, such as juvenile arthritis, Ms. Crow said the approach is similar to that used with adults in terms of exploring what is required of them to function daily.  

Some of the education that goes on with children is geared toward their parents, teachers or coaches. Example: Parents may need to give their children some space.

“I think there’s a tendency in the parent population to help too much. They want to help their child, but if you don’t allow your child the opportunity to navigate and overcome things on their own, then it [may] become a learned-helplessness situation,” she said.

Another consideration is explaining to people in the child’s world that there will be daily fluctuations in what they are able to do—particularly with respect to fatigue, which is an often-overlooked symptom in pediatric patients.  

Vanessa Caceres is a medical writer in Bradenton, Fla.