Generic recommendations (Grade, Evidence level)
Other considerations
References*
Preparation for transition may be considered from early adolescence (11-13 years) in accordance with the patient’s developmental stage (D, IV-V) HCP may want to consider the following when deciding when to start the transition process: mental and physical development, disease activity, health literacy, adherence to treatment, autonomy in disease management, family’s socioeconomic circumstances and school format. Foster13; Elli16; CAPHC19; Vajro17; NICE18; Brooks15; Ludvigsson 201614
For a transition model to be effective, the following may be considered for inclusion: For a transition model to be effective, the following may be considered for inclusion:
- the use of a structured, multidisciplinary transition programme within the clinic/healthcare unit (D, I-V)
Shared regional protocol agreed with HCP, AYA, parents/careers, HCP and regularly updated at least every 5 years. This could include age-appropriate written information and structured transition communication/reports between all paediatric and adult HCP. It may be helpful to have a lead person to coordinate the transition process and be a contact person for HCP, AYA and parents/carers.
Calvo, 201512; Foster, 201613; Brooks15; CAPHC19; NICE18, Vajro17
- informing AYA and parents/caregivers about allergy and/or asthma as well as the transition processes and the support available in a form that is appropriate for their developmental stage (D, I-V)
HCP may want to consider including the following information: purpose of transfer to an adult setting and what to expect when they come there; location of available adult centres, disease characteristics, treatments (including side effects), how to recognize alarm symptom, how to assist AYAs to take on their own care and support available. Ideas for formats: leaflets, web-page, audio for AYA with disabilities. It may be helpful for AYA to have their own personal transition plan17,19.
Brooks15; Calvo12; Elli16; CAPHC19; NICE18
- a checklist of skills and knowledge to assess AYA readiness for transition (D, I-V)
Tools can be used several times throughout the transition process in order to identify which areas of AYA self-management and well-being need to be addressed and improved. There are no specific allergy and asthma tools but generic ones are available: Transition Readiness Assessment Questionnaire20, “Ready, Steady, Go”21 and TR(x)ANSITION Scale 22.
CAPHC19; Vajro17; Brooks15; Foster13
- active monitoring of adherence to treatment through the transition process (D, I-V)
Adherence may benefit from targeted specific educational and organisational interventions, e.g. more frequent appointments15 , repeated education. A good open dialogue and communication is important. AYA with ”new onset” of a disease will have minimal prior experience and so need more input.
Calvo12; Brooks15; Vajro17; Ludvigsson14; Elli16
-a period of overlap between paediatric and adult care providers before AYA is transferred, then feedback from the adult to the paediatric clinic about their attendance and any changes in management (D, I-V)
Where AYA care needs to be moved to another service clinic, AYA medical information (ideally in the form of a transition report) should be transferred to the adult medical service. Where possible, AYA should be seen in a joint paediatric-adult clinic, AYA should ideally see the same HCP in adults’ services for at least the first 2 attended appointments after transfer 18.
Calvo12; Foster, 201613; Elli16; CAPHC19; NICE18; Ludvigsson14; Brooks15; Vajro17
- regular meetings between paediatric and adult care providers (D, I-V)
Particular focus should be placed on more complex patients. Meetings could be virtual. Process could be informed by areas of the assessment tools e.g. adherence, disease activity outcomes, HEADSS26.
Elli16;Vajro17
Other options for effective communication between HCP and AYA can be recommended (eg web-based, mobile technologies) (B, I-V) Options may include web-based communication boards and digital communication tools such as text. Vajro17;Brooks15; NICE18
Discussion of self-management of AYA allergy and/or asthma within current and potential future college, university, work or social environments may be considered (D, I-V) Areas that HCP may want to consider discussing lifestyle, future health concerns, educational and employment goals, independent living and housing options, financial needs, psychosocial, mental health, sexuality and reproduction. Particular attention is required while taking exams, especially in AYA with allergic rhinitis. Additional help may be needed from other professionals, eg psychologist, social and youth worker. Calvo12; CAPHC19; NICE18; Brooks15
Specific training in transitional and AYA care may be recommended for all HCP involved in transition process (C, II-V) Training in generic transition process, disease-specific and developmentally-appropriate care (e.g. clinical experience, e-learning, workshops) as part of the continuing professional development. Developmentally-appropriate healthcare should be practiced. Calvo12; Foster13; CAPHC19
Regular audit of a transition service may be recommended to assess key performance indicators and improve service provision (C, I-V) Audit should involve AYA and families, policy and decision makers, administrators, researchers, HCP and government agencies. Brooks15; CAPHC19; NICE18