Adolescentfriendly Rheumatology Services

Adolescents, as all age groups, have the right to be looked after by appropriately trained professionals, to receive information in a form and at a pace they can assimilate in an environment that respects their privacy and dignity and spares them embarrassment. Current evidence suggests that there remains room for improvement in these aspects of adolescent rheumatology health-service delivery. National surveys in the United Kingdom have reported limited adolescent rheumatology service provision in the United Kingdom (1) and significant unmet education and training needs among rheumatology professionals in both the pediatric and adult sectors (2). A Delphi study of adolescents with juvenile idiopathic arthritis (JIA), their parents, and a range of professionals involved in their care agreed on a set of aspects for what constituted best practice (and that were also highly feasible) in a key aspect of adolescent transitional care (Table 1) (3). In addition, they identified three attributes of best practice that were considered feasible in only a few hospitals. The availability of professionals knowledgeable in transitional care was one of these attributes (3).

In a large cohort of adolescents with JIA, the perceived quality of care received by adolescents and their parents was lower than what they would like (4). Dissatisfaction is not just a feature of secondary care. In a U.K. study of 4000 adolescents (15-16 years) in primary care, 53% reported problems with consultations (5). In another U.K. study of school students, 27% of females aged 12 to 15 years felt quite/very uneasy talking to their general practitioner (6). It is not only the young people who perceive problems. Parents of adolescents reported that doctors lacked communication skills with their teenage children and appeared uncomfortable when discussing sensitive topics such as sexual behavior (7). Several authors have explored the barriers to effective communication between adolescents and health professionals and examples of these are detailed in Table 2 (8-10). Some of these areas will now be discussed in detail.

Table 1 Best Practice in Adolescent Transitional Care

Aspects of care strongly agreed to be best practice and deemed highly feasible: Address young people's psychosocial and educational/vocational needs Use an individualized approach

Provide honest explanations of the adolescent's condition and associated health care

Provide opportunities for adolescents to express opinions and make informed decisions Maintain continuity in health personnel

Give adolescents the option of being seen by professionals without their parents present

Aspects of care agreed to be best practice, but deemed as having limited feasibility: Multidisciplinary teams (consultants only)

Professionals who are knowledgeable about adolescent development Age-appropriate physical environment

Dedicated adolescent environments (e.g., adolescent waiting areas) Providing opportunities to meet similar others

Source: Adapted from Ref. 3.

Table 2 Barriers to Effective Communication Between Young People and Health Professionals

Practical

Presence of parents Presence of students/trainees Gender of professional Time constraints

Limited contact (duration and/or frequency) Not routinely seeing the adolescent alone Lack of assurance of confidentiality Attitudinal

Perceived attitudes towards adolescents Type of information needed

Perceived lack of interest in wider impact of chronic illness Lack of perceived applicability Ambivalence about the role of the specialist Trust Honesty Fidelity Behavioral

Communication skills of the adolescent

Communication skills of the health professional

Lack of training of the professional

Lack of comfort with adolescent issues

Competency

Honesty

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