Invisible Patients: Young People With Chronic Diseases

The age between 18 and 25 is sometimes referred to as young adulthood. During this period, young people with chronic diseases move from pediatric care to adult care. That means there is a lot of uncertainty and instability, and they tend to engage in risky behavior. This group is what experts therefore call the “invisible patients”.

However, there is currently no specific care for this type of patient. That’s why we call them invisible. However, there is no doubt that this group is different from the other groups of patients (children, adults, the elderly) in all areas: physical, emotional, social and psychological.

Chronic diseases in invisible patients

Because chronic diseases require a strict and complicated care routine, the disease and situation that arises is often difficult to accept.  While their peers enjoy more freedom and autonomy, this is not true for the patient (Bell, Ferris, Fenton & Hooper, 2011).

Every condition is unique, but there may be cognitive side effects or elements of the disease and/or treatment. For example, medications to treat seizures can cause drowsiness, while medications for asthma or cancer can cause irritability and difficulty concentrating.

Simply encouraging adolescents to take the initiative and change the role of their parents during the transition process to young adulthood improves interaction, diagnosis and treatment (Van Staa, 2011).

After reviewing the literature, we have found that the health care system is inadequate when it comes to meeting the needs and particularities of invisible patients. Also, adult care facilities are often not suited to the complex needs of this group, which requires expert guidance and education.

Studies reveal two specific things that invisible patients want: access to psychological services and also more control over their lives.

A possible future for invisible patients

There is good news, however: we can help invisible patients successfully transition into adulthood despite their illness. For example, we can give them the tools to develop their self-management skills and information about the transition process (Kennedy, Sloman, Douglass, & Saywer, 2007).

The main goals of a transition are as follows:

• Working from a social framework. This requires shared responsibility between healthcare providers, patients and caregivers (Okumura et al., 2014).

• Dealing with family conflicts,  experiences related to the illness and also expectations of adult medical care. This also requires the cooperation of every member of the multidisciplinary team (Schwartz et al., 2013).
• Increasing patient responsibilities, especially during childhood and adolescence. For example, teaching young people to make their own medical appointments helps them take responsibility for their care. This gives them a sense of success and self-confidence (Bell, Ferris, Fenton, & Hooper, 2011).
• Training staff  in the care of young people with health problems.
• Overcoming funding barriers, time constraints and the health care needs of the elderly population (American Academy of pediatrics, American Academy of Family Physicians, and American College of Physicians, Transitions Clinical Report Authoring Group, 2011).

• Dealing with anxiety  of pediatric physicians, adolescents and their parents when it comes to planning care for the future.
• Developing appropriate resources  to evaluate the child or adolescent and also the family.

Adolescence can be a complicated stage. This is especially true in the case of a limiting disease without a cure. That is why it is important to work with young people  so that they do not become invisible patients, who feel lost, hopeless and disappointed.

Bibliography

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, MJ, Ong, T., Dawson, D., Nielson, D., Lewis, N., Richards, M., Kleinhenz, M.E. (2014). Improving transition from pediatric to adult cystic fibrosis care: program implementation and evaluation. Bmj Quality & Safety, 23, 64-72.

Kennedy, A., Sloman, F., Douglass, JA, & Sawyer, SM (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, GJ, Irvine, MJ, McCrindle, BW, Sananes, R., Ritvo, PG, Siu, SC, & Webb, GD (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.