Assessments of both transition and transfer readiness are integral components of any clinical encounter with AYA with RMD, as recognised in international guidance [
8••]. Such assessment promotes and facilitates opportunities for knowledge and skills training and helps track the individual AYA through the transition process. Assessment can also help identify AYA at risk of negative outcomes and enable professionals to intervene early.
However, based on findings from the aforementioned European survey of rheumatology centres [
11•], the use of assessment tools in routine transitional care practice does not seem particularly well embedded (with only 36.4% of surveyed services reporting the use of any checklist format tool as part of an individualised transition plan, slightly more so in paediatrics than adults). In addition, after examining the components of the tools reported as used by centres, the study found significant under-representation of key topics (including vocational readiness, mobility, living independently, travel and knowledge about the health system), thus raising the question as to how developmentally appropriate the tools were.
Transition Readiness
Several recent reviews of transition readiness tools [
45‐
47] have identified and examined a number of both condition-specific and non-condition-specific transition readiness tools, including the rheumatology-specific Readiness for Adult Care in Rheumatology (RACER) questionnaire [
48]. However, the psychometric properties of this and other available transition readiness tools are limited or untested [
45].
One non-condition-specific tool, the Transition Readiness Assessment Questionnaire (TRAQ) [
49,
50], developed with a population of older adolescents (16–26 years), was evaluated by Zhang et al. [
45] as the most robustly validated transition readiness tool to date. However, a psychometric evaluation of the TRAQ in a younger adolescent population (mean age 15.3 years) was unable to validate the measure [
51], raising questions about whether the TRAQ is a suitable measure to evaluate readiness among younger adolescents. Other concerns with this tool have been raised in relation to its predominantly medically focused orientation, which does not address all aspects of the transition process, prompting the development and psychometric evaluation of more holistic tools such as the revised ON TRAC questionnaire [
52].
Another aspect that has become increasingly apparent from recent examinations of available transition readiness tools is the significant variation in conceptualisations of transition readiness and the resulting challenges for measurement development and validation [
47]. Therefore, both clinicians and researchers should pay careful attention to what it is that is really being measured. For example, one could argue that most available transition readiness tools are in fact transfer (rather than transition) readiness measures. Another example of such conceptual variation can be found in the multifaceted nature of the readiness judgement. Most transition readiness measures should be interpreted as the AYA’s perception of their transition readiness whilst others, acknowledging the role and impact of parents and parental readiness on health transition [
21,
23], also incorporate parent-reported versions of the measures—with few of the non-condition-specific tools [
45,
53] and more of the condition-specific tools [
54‐
56] incorporating both AYA- and parent-reported readiness.
In addition, there are limitations of these measures such as their self-reported nature or the lack of assessment of actual mastery of skills. For example, a study of AYA with liver transplants found that young adults (
> 18 years) had significantly greater self-reported healthcare self-management compared with younger adolescents, but less than half of the young adults consistently managed their healthcare independently, made their own appointments or understood health insurance issues [
56]. Similarly, a study of older adolescents with liver transplants found that those reporting greater perceived self-management were associated with being at greater risk for medication non-adherence [
57]. Therefore, it is paramount to recognise that such skills do increase with age [
58,
59] and bear these trajectories in mind when using such assessment tools and use them in conjunction with routine developmental clinical assessment.
There are many challenges of assessing transition readiness in the clinic setting in addition to those of assessing mastery of skills. These include the complexity of conditions, the competing agendas (of various professionals, the parent(s) and the young person), limited time, limited personnel and resources, multiple other questionnaires, context of relapsing disease and the potential for regression of readiness. When studying transition readiness, these factors and their impact on any assessment should be considered. An attempt to simplify the practicalities of assessment concentrating on ensuring routine psychosocial screening could be just as effective, with the assistance of tools such as the HEEADSSS [
60] and the addition of trigger questions for health transition specific skills, medicine management and adherence with appropriate documentation—e.g. THRxEADS [
61].
It is also interesting to consider how AYA with LTHC compare with their healthy peers in their health knowledge and skills. In a study of 494 young people with and without LTHC (mean age 19.3 years), Eaton et al. [
62] reported that AYA with LTHC had greater transition readiness and self-involvement in completing medical tasks with less parent involvement than their healthy peers, but there was no difference in general self-efficacy and the ‘managing daily activities’ subscale of the TRAQ. These findings support the idea that understanding ‘normal’ AYA development is key to understanding the impact of a LTHC during adolescence and young adulthood.
It could also be argued that AYA are no different from older adults in their health-related skills. For example, Fishman et al. [
63] conducted a survey with 141 adults with IBD (aged 25–55 years) and found that 37% could not recall drug doses, 35% could not recall drug frequency and 73% of those on a biologic did not cite infection as a side effect [
63]. This suggests that perhaps by investing more resources during adolescence and young adulthood (as the life stage when both risky and health-promoting behaviours become established), adult health could also improve.
Experience and Satisfaction
Patient experience measures for transition are also available. These include the Adolescent Assessment of Preparation for Transition (ADAPT) [
64] for AYA aged 16–17 years, and the Mind the Gap scale [
65] which measures satisfaction with transitional care for both AYA and parents. The novelty of the Mind the Gap scale, which was first developed as part of a multicentre study of transitional care in UK rheumatology [
24], is that it measures the gap between what the individual considers the best practice and what they are currently experiencing [
65] and therefore is potentially more informative.
Patient experience measures specifically addressing the event of transfer and self-efficacy have also been developed, such as the On Your Own Feet Transfer Experience Scale (OYOF-TES) [
39] and the On Your Own Feet Self-Efficacy Scale (OYOF-SES) [
40], both of which used successfully in the recent evaluation of a clinical transition pathway for adolescents with juvenile-onset RMD in the Netherlands [
38] (Table
1).
Successful engagement of AYA has been reported to require a team-based approach [
66], and changes in the team climate have been identified as predictors of the quality of transitional care delivery [
67]. Therefore, attention to how such teams communicate and deliver transitional care for AYA over time is important. Checklists for professionals have been developed to support this. In the UK, a team-planning template was developed as part of the first UK rheumatology transition research programme [
33] to coordinate team-working with AYA during the transition process [
68]. This work was later on adopted by others in the UK and used across hospitals and specialties [
34]. Internationally, Akre and colleagues developed a checklist for rheumatology professionals from a consensus exercise among an international expert panel [
69].
Finally, a note of caution when using any readiness, knowledge, skills, experience or satisfaction measures, it is fundamental that rheumatology team members have the knowledge and skills to address any issues raised by AYA and/or their parents. As noted above, studies in both paediatric [
13,
14] and adult settings [
15] continue to report unmet needs in this area, including transitional care. Therefore, a key component of transitional care is ensuring staff training in AYA-specific health issues, an aspect which is also recognised in EULAR guidance [
8••].