As the U.S. population ages, health providers and administrators in assisted living, skilled nursing, and post-acute care centers will need actionable strategies in place to manage the pain, stiffness, and limitations of activity caused by arthritis. Beyond addressing individual patient needs, the living environments of these patients and their ability to access mobility aids and treatments
will be a high priority.
Just The Facts
There are more than 100 different kinds of arthritis, ranging from osteoarthritis (OA) caused by joint damage or wear and tear, to autoimmune forms, such as rheumatoid arthritis (RA), that are often diagnosed in young adults and require lifelong commitment to treatment and management.
The U.S. Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH) estimate that nearly a quarter of all adults, 52.5 million, have self-reported doctor-diagnosed arthritis, and, of those, 22.7 million have arthritis and arthritis-attributable activity limitations.
It’s very common for people living with arthritis to also have multiple comorbidities, such as heart disease, chronic respiratory condition, depression, or diabetes.
In the nursing care or assisted living setting, arthritis is more common in women, but prevalence increases in both women and men as the patient ages.
As patients get older, it’s expected that arthritis will increasingly cause disability and compromise quality of life as patients require more assistance with the tasks of everyday living, such as bathing, dressing, and getting in or out of bed, according to the Population Reference Bureau.
The central question that health care providers need to ask of themselves is how to best understand and address the needs of this growing patient population.
Listen First, Treat Second
Patient voices need to be heard. Physicians need to elicit information about domains important to them, such as sleep, pain, fatigue, and tolerance to medication. To this end, accumulating Patient Reported Outcomes (PRO) from the individual and the patient community are at the center of arthritis management strategies.
In RA, particularly, assessing and collecting PRO data is integral and a common practice. The NIH Patient Reported Outcomes Measurement Information System has developed generic health measures across a range of symptoms that potentially affect the RA patient that can now be used to assess responsiveness and clinically meaningful cutoffs for treatment and management strategies. Various tools can be reviewed and selected at www.nihpromis.org
PRO Influence Growing
Widely available and in use, PRO measures provide important perspectives not evident in clinical, lab-based data, and they have the potential of better informing treatment decisions in clinical practice.
According to a physician survey presented at the American College of Rheumatology 2014 annual meeting, the use of data in rheumatology visits is going up, and rheumatologists seem to prefer measures where patients are delivering the most information.
According to CDC, the most commonly used PRO measures in RA are:
- Health Assessment Questionnaire—Disability Index (HAQ-DI), a 41-item questionnaire (20 items for daily activities, 13 for assistive devices, eight for assistance from others).
- Routine Assessment of Patient Index Data 3 (RAPID3). As explained by Orbai and Bingham, RAPID3 is a composite disease activity index consisting of the three PROs included in the ACR Core Set: disability, pain, and patient global assessment of disease activity. Disability is measured using the multidimensional HAQ (MD-HAQ), a 10-item questionnaire that adds two items, “over the last week were you able to walk two miles or three kilometers” and “participate in recreational activities and sports as you would like,” to the eight-item Modified Health Assessment Questionnaire. Notably, Golightly et al. recommend a tiered PRO approach for the management of OA. For example, the WOMAC (Western Ontario and McMaster Universities Arthritis Index) is commonly used to evaluate pain, stiffness, and physical function in knee and hip arthritis.
Treating The Whole Patient
While radiographic results and clinical lab work represent the gold standard for assessing disease activity in clinics, PRO measures are vital to understanding a patient’s experience. Listening to the patients’ responses to treatment is paramount. Medications across different classes are associated with rare, but serious, adverse events, and patients’ anxiety and overall tolerance of a medication affect their ability to maintain and benefit from treatment. Treatment adherence may be further compromised because certain medicines require additional steps, like self-administered injection or infusion in a hospital or infusion center.
Arthritis patients, whether autoimmune or OA, also deal with complex body image issues and may develop anxiety or depression about their condition. Researchers have found that:
- In OA, structural changes impact a patient’s mobility and ability to participate in activities they enjoy, which can result in a feeling of loss.
- In OA and RA, patients may feel self-conscious about changes in their body caused by the disease and the treatment, for example, by weight gain caused by steroids or changes in libido.
- Relationships are impacted as the disease seemingly takes over other aspects of life, for example, the ability to work, exercise, or participate in other hobbies.
Health providers can help arthritis patients overcome real and perceived barriers to treatment by encouraging patients to be active partners in their own care. Beyond discussing personal treatment strategies, health providers can educate their patients about CDC-recommended arthritis intervention and physical activity programs (www.cdc.gov/arthritis/interventions/index.htm
). Administrators might also review these programs to determine which could be adapted by their center to offer their local patient population access to education, joint-friendly physical activity, and support. The American College of Rheumatology also recommends early intervention for best treatment outcomes.
External Forces Impact Ability To Provide Quality Care
Unfortunately, the business of medicine impacts patient care, specifically the high cost of specialty medications for the autoimmune arthritis patient. In the assisted living and nursing care center environment, the cost of the medications and a patient’s ability to access them, if they need to be infused elsewhere, may also impact care. Payers who require a specific clinical pathway treatment program also directly inhibit a provider’s freedom to treat a patient independent of all financial restrictions, as well.
On the professional side, rheumatologists very likely are not the primary specialist seen by arthritis patients in the long term care setting. Rather, internists or geriatricians may be the first-line physician, but there is a severe shortage of such specialists in the United States, according to a recent report. It would be worthwhile for institutions serving older adults to encourage health professionals to seek arthritis continued medical education opportunities in order to remain engaged in best practices.
Recall that older adults with arthritis may also have one or more comorbid conditions and be seeing several physicians, which is why a team-based, patient-centered approach to understanding how treatment and management strategies impact individual patients is so important. The team needs to keep the lines of communication open.
Aging And Arthritis
As the baby boomer population ages, more and more patients in the extended care center setting will be impacted by arthritis. Patient-centered care relies on hearing the patient’s concerns about treatment and its impact on their quality of life in order to adjust treatment accordingly. That’s why physicians and nurses need to be active listeners and engaged conversationalists to motivate arthritis patients to be compliant with treatment and report their response to treatment to impact outcomes, particularly since arthritis is a chronic disease for which there is no cure. For example, some patients might benefit from a biologic, but if they cannot tolerate it or afford it, then a course correction will be needed.
Patients can and should take equal responsibility for complying with treatment recommendations, including taking prescribed medications and incorporating everyday management strategies into their day-to-day routine. Encourage arthritis patients to be equal partners in their care by tracking the symptoms and treatment via ArthritisPower
or reaching out for support available locally or online such as via the online support group CreakyJoints. When physicians and patients work together to treat the body and the mind, there are greater opportunities to live well.
Jonathan Krant, MD, is medical director of CreakyJoints and section chief of rheumatology at Adirondack Health Systems, Saranac Lake, N.Y.