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.
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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