Invisible Patients: Young People and Chronic Disease
Adolescence tends to be quite a critical period, and it’s common for there to be a dissociation between a person’s chronological age and maturation (physical and psychological) during it. After this stage, the age range between 18 and 25 is sometimes called “emerging adult age”.
In this period, young people with chronic diseases move from pediatric care to adult care. Things are unstable and they’re more likely to engage in risky behaviors. These are what experts call “invisible patients.”
Currently, there is no specific health service for this group of patients. That’s why we call them invisible. Unquestionably, the needs of this group are very different from those of the other groups (children, adults, the elderly) on all levels: physically, emotionally, socially, and psychologically.
Chronic diseases in invisible patients
Because chronic diseases require a strict and complex routine of care, in many cases the disease and resulting situation is difficult to accept. So, while their healthy peers enjoy more freedom and autonomy, this progression does not occur for the patient (Bell, Ferris, Fenton, & Hooper, 2011).
Each condition is unique, and there may be cognitive side effects or elements of the disease and/or treatment. For example, medications to treat seizures can cause sedation, while those that treat asthma or cancer can lead to irritability and difficulty focusing.
Simply encouraging adolescents to take the initiative and change the role of their parents during the process of transition to “emerging adulthood” improves interaction, diagnosis, and treatment (Van Staa, 2011).
After reviewing the literature, we found that the health system is deficient in meeting the needs and particularities of invisible patients. Also, adult care facilities are often not equipped for the complex developmental needs of this population, who needs professional guidance and education. Studies mention two specific things invisible patients want: access to psychosocial services and greater control over their lives.
A possible future for invisible patients
There’s good news: we can help them have a successful transition to adulthood in spite of their disease. For example, we provide them with tools to develop their self-management skills and information about the transition process (Kennedy, Sloman, Douglass, & Saywer, 2007).
The primary purposes of a transition are the following:
- Working from a socio-environmental framework. This requires shared responsibility among healthcare providers, patients, and caregivers (Okumura et al., 2014).
- Managing family conflicts, experiences related to the disease and changing expectations about medical care for adults. Again, this takes work from every member of the multidisciplinary team (Schwartz et al., 2013).
- Increasing the patient’s responsibility progressively throughout childhood and adolescence. For example, teaching young people to make medical appointments for themselves helps them take responsibility for their healthcare, gives them a sense of achievement, and ups their self-esteem (Bell, Ferris, Fenton, & Hooper, 2011).
- Training health personnel to care for and manage young people with health conditions.
- Overcoming funding barriers, lack of time, and the aging population’s healthcare needs (American Academy of pediatrics, American Academy of Family Physicians, and American College of Physicians, Transitions Clinical Report Authoring Group, 2011).
- Manage the anxiety of pediatricians, adolescents and their parents about planning future health care.
- Developing appropriate tools to evaluate the child or adolescent and the family.
Adolescence can be a complicated stage, even more so if there is a limiting disease with no cure. Hence the importance of working with the young person so that they do not join the ranks of the invisible patients who reach adolescence feeling lost, disenchanted, and hopeless.
American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians, Transitions Clinical Report Authoring Group. (2011). Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home. Pediatrics, 128(1), 182-200.
Bell, L. E., Ferris, M. E., Fenton, N., & Hooper, S. R. (2011). Health Care Transition for Adolescents With CKD-The Journey From Pediatric to Adult Care. Advances in Chronic Kidney Disease, 18(5), 384-390.
Okumura, M. J., Ong, T., Dawson, D., Nielson, D., Lewis, N., Richards, M., Kleinhenz, M. E. (2014). Improving transition from paediatric to adult cystic fibrosis care: programme implementation and evaluation. Bmj Quality & Safety, 23, 64-72.
Kennedy, A., Sloman, F., Douglass, J. A., & Sawyer, S. M. (2007). Young people with chronic illness: the approach to transition. Internal Medicine Journal, 37(8), 555-560.
Van Staa, A. (2011). Unraveling triadic communication in hospital consultations with adolescents with chronic conditions: The added value of mixed methods research. Patient Education and Counseling, 82(3), 455-464
Reid, G. J., Irvine, M. J., McCrindle, B. W., Sananes, R., Ritvo, P. G., Siu, S. C., & Webb, G. D. (2004). Prevalence and correlates of successful transfer from pediatric to adult health care among a cohort of young adults with complex congenital heart defects. Pediatrics, 113(3), E197-E205.