Transitioning Young People With Rheumatic Diseases to Adult Rheumatology Care: The Challenges We Face

Introduction

The main goal of rheumatologists is to ensure that their patients receive the best possible medical care. It is also important that the disease affects young people's physical and social functioning as little as possible, especially during the transition from pediatric to adult care. To achieve these goals, close collaboration between pediatric and adult rheumatologists is necessary, as well as cooperation between rheumatologists and primary healthcare specialists. The phrase "Transition should never be considered a sprint, a 'click' of a button, or simply a transfer from pediatric care to adult care. Transition is more like a marathon that begins from the moment of diagnosis" best reflects the principle of transition (1). This article will review the issues encountered during transition in Lithuania and worldwide.

Global Situation

The transition of young people from pediatric to adult care has been a topic of discussion and efforts to find solutions worldwide for about 20 years (2). Specialists from Great Britain and the United States are most actively working in this area. These countries have not only established transition programs but also continuously monitor their effectiveness and shortcomings. With the assistance of the World Health Organization and the Department of Health in Great Britain, they have also developed and formalized quality criteria for youth-friendly healthcare services (3).

Numerous studies have been conducted worldwide, particularly in Great Britain, demonstrating the benefits of a smooth transition of young people to adult rheumatologists. In one multicenter study conducted in Great Britain, it was found that following a successful transition, young people's quality of life improved after 6 and 12 months, their independence increased, satisfaction with healthcare services improved, and career opportunities expanded (4).

Many different programs have been reviewed and tested, but all of them have the same goals:

● provide high-quality, coordinated, uninterrupted healthcare services that are patient-centered and tailored to the patient's age, cultural, and developmental needs. This care must be accessible and comprehensive;

● promote young people's communication, decision-making, resilience, self-care, and self-representation skills to optimize life opportunities;

● provide support to the young person's parents/guardians during this process (4–6).

For a smooth transition to take place, the transition program must include certain key components:

● a discussed and written transition strategy involving the pediatric rheumatology team and the adult rheumatology team, with a flexible schedule for the transfer;

● the involvement of a liaison person from the adult and pediatric care teams. This person should be knowledgeable and experienced in adolescent healthcare. The liaison's duties can be performed by a nurse who acts as a bridge between pediatric and adult services;

● an adult rheumatology team with the necessary skills, time, willingness, and resources to collaborate with the pediatric and adolescent rheumatology team;

● an individualized approach for each young patient, focused on engagement and planning from the beginning and throughout the entire transition process;

● education and support, including knowledge and communication skills related to the young person's disease, medications, general health, and skills that facilitate communication with consulting healthcare professionals and decision-making;

● availability of information and appropriate resources to explain and support the transition period for young people and their parents/guardians, directing them to appropriate local support centers;

● support for parents and guardians to facilitate their involvement in the process, encourage shared care, and promote independence from early adolescence;

● involvement of primary healthcare and social/educational care representatives;

● staff training in transitional healthcare, adolescent healthcare, and communication with young people;

● administrative support to facilitate record-keeping and information transfer between healthcare service providers.

Medical Summary Transfer

Benefits of Transfer for Young Patients

Transferring medical summaries is beneficial for both specialists and patients. These are just a few aspects that can be individualized and adapted according to the possibilities and needs of each healthcare center (4, 5). Regardless of how straightforward the transfer program from pediatric rheumatologists to adult rheumatologists may seem, it often involves certain problems and questions. A study conducted in the UK examined the direct experiences of 6 adolescents aged 16–18 years. The participants and healthcare specialists were surveyed at various stages of the transfer. Two main themes were identified as having the greatest influence on defining a positive patient experience: receiving services in a clinical environment and living with the disease outside the clinical environment.

A positive experience of receiving services in a clinical environment was associated with certain transfer models that allowed adolescents to familiarize themselves with the new adult clinic environment in advance, have a liaison person with whom they felt more confident, and improve their knowledge about their disease and treatment. A positive experience of living with the disease outside the clinical environment was associated with support and information provided by the team involved in the transfer process. The information adolescents wanted during the process was basic but very important, for example, how to reconcile the disease with work, whether they could attend university, how to explain the disease to a boyfriend/girlfriend, what impact the disease would have on their intimate life, how to become more independent from their parents, etc. Patients obtained this information by getting to know their team and feeling encouraged to communicate with them. The study also described several transfer models. The most attractive and acceptable approach for adolescents appeared to be one in which they had the opportunity to become familiar with the adult rheumatology team and clinical environment before the transfer. In contrast, adolescents transferred directly from pediatric to adult care emphasized significant gaps in continuity due to the organization of specialists and visits, as well as fear and uncertainty about what would happen next (7).

According to data from numerous studies, adolescents are most encouraged by becoming familiar with the team and the new environment from the very beginning of the transfer process (4, 7–9). However, such opportunities are by no means provided in all healthcare centers.

Situation in Lithuania

Currently, the situation regarding patient transfer in Lithuania is concerning. Adolescents are generally transferred from pediatric rheumatologists to adult rheumatologists upon reaching adulthood. The good news is that they transition to adult care with an established diagnosis and treatment for the disease, which is particularly relevant for adolescents receiving biological therapy. The bad news is that sometimes, after transitioning to adult care, the diagnosis changes for unclear reasons, and the treatment may also be altered.

It is encouraging that the issue of adolescent transfer in Lithuania is increasingly being discussed. In the future, there are plans to modify the current approach. A realistic goal would be to develop a more coordinated transition program that provides greater continuity between pediatric and adult rheumatology care. Creating such a program requires considerable effort, as well as human and financial resources, but thanks to young and aspiring specialists, the transfer process in Lithuania is expected to change for the better in the near future.

Summary

Worldwide, even in developed countries such as Great Britain and the United States of America, despite awareness and accumulated evidence that the transition from pediatric rheumatologists to adult rheumatologists is an important aspect of optimal healthcare, transition care programs often remain suboptimal due to fragmented provision of pediatric and adult healthcare services, financing, and training of healthcare providers. Programs need to be improved, and existing problems need to be addressed. A change in the attitudes of healthcare specialists is also necessary. Only in this way can better results be achieved.

Eglė Lanzbergaitė, Skirmantė Rusonienė, Violeta Panavienė

Source: "Internistas", No. 1, 2016