Tips for Managing Young Adult Rheumatology Patients

The clinician must be aware of the psychosocial challenges that inform their young patients’ perspectives on disease management.
Rocketclips, Inc./shutterstock.com

Often, young adults (18–23 years old) with rheumatic illness demonstrate poor adherence to treatment regimens, lack advocacy skills and have inadequate knowledge about diagnosis and treatment.¹ Patients presenting at a transition clinic are typically comfortable with having their parents continue to be centrally involved with their care, but this is a time in life when independence and self-reliance must be fostered.

The lack of preparation to independently fend for themselves within the adult healthcare system increases the likelihood of poor outcomes. In order to ease the transition to full independence, the clinician must be mindful of the psychosocial challenges that inform their patients’ perspectives on both themselves and disease management. A multiplicity of considerations may come into play, including the navigation of developmental tasks; the influences of the environmental milieu; and individual differences in resiliency, instrumental support and the ability to implement skills to cope with emotional turmoil.

Because empirical data on the unique needs of young adult patients is limited to date, this article endeavors to provide direction to clinicians by drawing on personal experience and the published literature, where available. (Note: For brevity, the term clinician is used to describe a rheumatologist or any rheumatology health professional involved in the care of the young adult.)

Developmental Challenges

Growing up involves developmental challenges for those with rheumatic illness and healthy young adults alike.

Identity formation—During the process of identity formation, the young adult’s morality matures, allowing for the development of value orientations that underlie moral reasoning and judgment. This provides the catalyst for the individual to strive for a sense of control over the decisions and actions that lead to achievement of meaningful personal goals, without undue influence or dependence on one’s parents.²

Success in this endeavor provides growing self-confidence, but for some it also may require distancing themselves from the expectations imposed by people in authority positions, including clinicians. Clearly, the exploration of one’s burgeoning personality requires a good measure of critical thinking about oneself and the surrounding world.³

Autonomy from parents—The degree of autonomy that is satisfactory to the young adult is dependent on many variables, including familial and cultural values, such as commitment to education and marriage. Although living away from the parental home has historically been regarded as a symbol of independence in the West, it still largely hinges on the family’s ability and willingness to finance independent living. However, another significant challenge to autonomy is the presence of overly protective parenting that could potentially impair psychological well-being. That is, parental denial of opportunities for well-managed risk experiences that include progressively larger responsibilities can stunt young adults’ confidence to learn from mistakes and fix problems on their own.⁴

One obvious fallout from excessive shielding is that the young adult may choose to do everything in their power to demonstrate they can look after themselves. This form of rebellion toward authority, designed to establish separation, can easily manifest as rejection of medical advice. Thus, the clinician may witness a period of time during which the patient must see for themselves the results of noncompliance with treatment. This leaves the clinician in the ironic position of having medical recommendations, targeted to assist the young adult in feeling normal, being obstructed by a rebellious response that, by nature, feels normal to the young adult.

The clinician may, however, find the young adult receptive to indicators of autonomy that promote emancipation from parental influence. For example, a transition clinic can enforce a policy requiring the young adult to attend the clinical examination alone, without parental presence. Self-advocacy skills can also be taught. Finally, tips for developing independent living skills can be conveyed. This is particularly important for patients who find themselves in a milieu of violence and/or substance abuse.

Establishment of peer relationships—Young adults are developing relationships outside of the family, and their self-esteem is often linked to an open expression of thoughts and feelings that are accepted by peers. Consequently, the young adult may experience the struggle, and perhaps the exhilaration, of creating an explicit identity through the collapse of certain beliefs that previously provided stabilization and comfort. For this reason, the importance of providing opportunities for establishing positive peer relationships in social environments that are inclusive and accepting of diversity cannot be overstated.

The clinician may witness a period of time during which the patient must see for themselves the results of noncompliance with treatment. This leaves the clinician in the ironic position of having medical recommendations, targeted to assist the young adult in feeling normal, being obstructed by a rebellious response that, by nature, feels normal to the young adult.

The young adult patient may also have the added worry about how best to prove that physical limitations from symptomatology can be withstood. The possibility of death or severe disability from disease complications may invoke profound feelings of isolation precisely at a time when one is typically striving for contact and belongingness. If this is the case, the clinician can counter by encouraging socialization with others, perhaps through social support groups that offer exposure to others dealing with a similar condition.

Gender roles, sexuality & reproductive health—Young adulthood ushers increasing understanding about gender roles in society, emergence of a personal sexual orientation and experimentation with sexual behavior. A considerable proportion of adolescent rheumatology patients have reproductive concerns.⁵ The patient may be coping with the added complexity of the impact of arthritis on body image, including one’s feelings of attractiveness. A poor self-evaluation can cause a cascade of negativity on the desire for emotional closeness and openness to sensory experiences.

Transition clinic staff is well situated to discuss such themes as sexual identity and the physical and emotional changes that are impacting on body image. The clinician may initiate a conversation on family planning or explore patients’ decision making while under peer pressure for sex. Additionally, links to sexual health services in the community, where available, can be provided.

Vocational planning—The patient’s sense of competence to achieve in life may be undermined by arthritis symptoms. Pain and extreme fatigue are important determinants of increased school absences and lower physical functioning, independent of the extent of disease activity.⁶ Consequently, arthritis may exacerbate feelings of directionless at a crucial time when the young person is already struggling to establish a clear purpose to life, as defined by career aspirations.

For patients in the midst of contemplating the impact of symptomatology as a blocking force on a desired career path, the clinician must be available to console patients over truncated vocational plans. The young adult may require help in formulating realistic expectations for future employment—without summarily ruling out alternate ideas for a future occupation. A referral to vocational rehabilitation services, where available, will expedite an accurate assessment of the compatibility of interests and physical abilities with post-secondary education or training options.

Environmental Challenges

The global economy and the imposition of financial constraints—The seemingly capricious nature of the global economy is well documented, and its vagaries have had an enormous impact on young people. Within the timespan of a generation, it’s now taking up to a decade longer to meet previously accepted indicators of adulthood: finding a job or establishing a career, achieving financial independence, deciding on a life partner, having children and owning property. For contemporary 20-somethings, this stage in life may be a time of wondrous discovery or it may induce a crushing sense of personal failure.⁷

We are witnessing a growing abundance of poorly educated young workers who are mired in low-wage jobs as their only source of income. Nor is it uncommon for those who acquired an education to be entering adult life hamstrung by the requirement to service a massive student debt load. These financial constraints have the power to influence the selection of treatment options.

A clinician can minimize the financial burden by helping the patient navigate the paperwork necessary to ensure continued medication/health service coverage during the transition from dependence on parental insurance carriers to enrollment in governmental or private sector funding bodies.

The rise of social media’s influence on adherence to treatment—As noted earlier, a young adult may view noncompliance with recommended treatment as a direct expression of personal independence. Others, due to an unstable home situation, lack a strong social support system that would fortify their adherence to a medication regimen. For a few patients, there may be psychological comfort in avoiding anxiety about being accountable for treatment decision making and feelings of dread over the implications of treatment failure.

There may be other factors at work, too. A significant proportion of young adults view pharmacological approaches with a high degree of suspicion. They may have already experienced side effects from medication. But it is more likely that they have accessed the Internet and read negative personal narratives about an individual medication or class of drug. Thus, the power of opinion on social media sites, often cloaked in skepticism or even disinformation, to formulate impressions on treatment should not be discounted.

It is entirely valid for the patient to raise concerns about the impact of treatment on appearance, relationships and education. Therefore, opportunities to discuss the effects of treatment should be provided early and regularly.⁸ Social media can be enlisted as a useful ally to assist the patient in securing online tools that promote disease self-management. For example, healthy lifestyle behaviors can be supported by encouraging the patient to go online and seek out apps that promote long-term health goals, such as maintenance of a healthy diet and regular exercise.

The emergence of medicinal marijuana for pain management—Medicinal marijuana is increasingly advocated as a treatment for rheumatic pain.⁹ This resonates for many arthritis patients, who are characteristically open-minded about complementary therapies. Confounding the issue somewhat is the social trend among young adults of viewing marijuana use for relaxation as a socially acceptable and rather harmless solution to anxiety—in much the same way their grandparents and parents viewed minor tranquilizers. These two popular beliefs drive the contemporary social movement for marijuana legalization and, in all probability, foreshadows an increasing demand by rheumatology patients for physician-approved access to cannabis and cannabinoid products as alternative medicine.

Unfortunately, there is not yet a sufficient body of clinical trials of medicinal marijuana in various rheumatic conditions to allow for definitive conclusions regarding effects.^10,11 The crux of the matter is that, for the scientifically trained rheumatologist, caution is required, because research has yet to determine what quantity of medical marijuana (e.g., dosage or measurement) delivered by a specific route (e.g., individual differences in frequency and length of inhalation, as well as availability of edibles) will produce a known result (e.g., predicted outcome). Therefore, it is foreseeable that most rheumatologists will continue to approach medicinal marijuana, especially for young persons with rheumatic disease, as a public health issue.

In cases where it must be conceded that the young adult will use medicinal marijuana regardless of medical opinion, the transition clinic team should respond by engaging the patient in a conversation that covers the following points:

• Long-term outcome. The patient must be able to distinguish between treatments for disease suppression and approaches to pain management. Marijuana’s ability to provide relief through dissociation of the pain experience does not in any way signify that arthritis is inactive or in remission.
• Known risks. First, human brain development continues into the early 20s, and exposure to cannabinoids may result in impaired neural connectivity in areas of the brain important for learning, alertness, executive function and inhibitory control.¹² Second, herbal cannabis may impair motor coordination leading to an increased rate of serious injury or death in motor vehicle collisions.¹³ Third, legal implications exist when undertaking the acquisition of a controlled substance if the appropriate bureaucratic sanctions are not in place.
• Administration options. The oral route (edibles) eliminates the immediacy of a head high and, therefore, presumably reduces the risk of addiction.¹⁴ Vaping instead of toking provides greater protection to respiratory health.¹⁵ Products with higher cannabidiol (CBD) to tetrahydrocannabinol (THC) ratios reportedly maximize pain relief while providing greater protection from psychoactive effects.¹⁶

Individual Differences in Adjustment

Coping with changes in quality of life—The main predictors of impaired health-related quality of life for children and adolescents with JIA have been found to be functional ability, pain, subjective burden of medication use and school absence.¹⁷ The nature of flares is also particularly hard on patients. The seemingly random and sporadic appearance and disappearance of symptoms may cause the patient to experience relatively rapid swings between feeling in control to feeling powerless, from feeling hope and optimism to feeling disappointment and frustration.¹⁸

This emotional roller coaster of uncertainty may lead to a predicament in which managing treatment becomes the major focal point to the young adult’s life. Well-meaning recommendations and referrals can readily consume a huge chunk of the patient’s spare time. A balance must be struck that allows patients to make time for activities that inject fun and passion into their lives.

Striving to live a normal life—Young adults typically don’t want to be perceived as different from their peers. However, pain and visible signs of disability can set the patient apart, not only by creating forced dependency on others, but by stoking the unsavory sensation of being on stage rather than being just part of the crowd. The corollary problem is that some patients endure stigma when symptoms are largely invisible to outside observers. Trivialization of the disease may occur, or even worse, the patient is labeled weak because of difficulty they experience in performing certain physical or recreational activities.

The curtailment of recreational pursuits and peer-group activities will further erode one’s sense of normality. The clinician would do well to inquire about the patient’s self-esteem so that measures may be taken to fortify the patient’s self-perception, as needed.

Motivation to engage in self-management strategies—Traditionally, patient education focused on the disease process, and technical skills were taught to better manage the disease.¹⁹ Additionally, the clinician reinforces understanding about the diagnosis and the available options for treatment. This type of patient education remains an essential component of care for a young adult rheumatology patient. However, young adults also require active involvement in their own health decision making to increase their confidence and resourcefulness for self-management.¹⁸

The underlying principles and critical skills for self-management of chronic illness are well documented.^20-22 Essentially, self-management education teaches patients the skills to self-identify problems of living with chronic illness and how to use a process to solve those problems. Interventions that increasingly put the responsibility for chronic disease management onto the patient by enhancing self-efficacy, coping skills, social support and follow-up plans positively impact health outcomes.²³

However, for a self-management strategy to be effective, the young adult must be motivated to actually work on the tasks that will lead to living well with a chronic condition. By using a task-centered approach, the clinician will be able to assess the young adult’s willingness to work on the problem to achieve a desirable goal.^24,25

Tips for Improving Communication

A clinician who starts a session with excessive questioning and standardized treatment protocols runs the risk of enduring long silences. This is because young adults tend to be highly protective of their emerging selfhood and, therefore, loathe disclosing anything of a personal nature to someone who comes across as overbearing and has yet to earn their trust. The appearance of talking down to the patient or assuming a verbal one-up stance threatens the patient’s vulnerable sense of dignity.²⁶ However, breaking the ice is easily expedited if the clinician conveys respect and authenticity.

Respectful relating—Respectful relating requires the clinician to engage the young adult patient with a little small talk before proceeding to questioning. Regularly soliciting young adults’ feedback allows them to feel respected as an individual because their voice is being heard. It has the additional benefit of tapping into the opinions held by this cohort on symptomatology, treatment and lifestyle issues.

Perhaps most importantly, the clinician must convey it’s understood that the patient is fully capable of making their own decisions around treatment choices. That is, the young adult is being notified that help is being offered, but the decision to accept help is entirely their own, and that decision will be honored.

Direct & authentic feedback—A clinician’s avoidance of difficult topics, particularly if it is in the hopes of not alienating the young adult, will be quickly ascertained by the patient. Rather than signaling that the clinician genuinely cares, the patient is more likely to interpret such tactics as a willingness to sacrifice a measure of self-respect to appease the young adult.²⁶

To maintain the credibility required to do an effective job, the clinician would be better received if questions or comments are delivered in a candid manner, if not done in a condescending or punitive manner. For example, the patient will likely respond positively to direct feedback on the use of medicinal marijuana in the context of the developing brain. The young adult is probably already aware of cognitive and psychomotor effects, but spent less time contemplating possible long-term risk to motivation levels (reflected in education, employment, lifetime achievement and life satisfaction) and to mood (depression and anxiety).²⁷

The power of opinion on social media sites, often cloaked in skepticism or even disinformation, to formulate impressions on treatment should not be discounted.

Conclusion

Transition clinics exist so that developmentally appropriate healthcare can be delivered to young adults in order to maximize function in everyday life. History has taught us that patients are in danger of being lost to medical follow-up in the gap between pediatric care and the adult healthcare system. This is due to three factors: 1) a poorly organized or sparse local healthcare delivery system; 2) lifespan influences, such as moving out of the family home to attend college; and 3) patients’ lack of self-empowerment to become active participants in their treatment planning.

By mapping out these variables, the clinician may be in a better position to help a young adult acquire the knowledge and insight to assume responsibility for following through on a plan of action, secure and use planned services, and broker the support necessary to develop independent living skills.³

The clinician must adopt an approach to care provision that encompasses a complex array of developmental, environmental and personal dynamics that potentially impact a patient’s ability to lead a meaningful and joyful life despite the presence of chronic disease. Further, the clinician should think critically about one’s own approach to the young adult patient. This may aid the clinician in finding an approach that best prompts the young adult rheumatology patient to improve their understanding, attain informed decision making and air their concerns. This will result in an enhanced self-regard.

Gregory Taylor, MSW, RCSW, is a team member in the Young Adults with Rheumatic Disease Clinic for the Mary Pack Arthritis Program, Vancouver (B.C., Canada) Coastal Health. Mr. Taylor also provides social work services to an adult population on an outpatient basis.

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