Institute of Child Health, University of Birmingham, Birmingham, UK.
Correspondence to: J. E. McDonagh, Institute of Child Health, Diana, Princess of Wales Children's Hospital, Steelhouse Lane, Birmingham B4 6NH, UK. E-mail: j.e.mcdonagh{at}bham.ac.uk
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Abstract |
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Methods. A modified two-stage Delphi study was undertaken with rheumatology health professionals, young people with JIA (aged 1225 yr) and their parents. Participants were presented with statements about transitional care and asked to rate (i) the extent to which these constituted best practice, and (ii) their feasibility.
Results. Second-round questionnaires were completed by 83 individuals, representing an overall response rate of 90%. Items strongly agreed to constitute best practice and highly feasible included: addressing young people's psychosocial and educational/vocational needs; using an individualized approach; providing honest explanations of the adolescent's condition and health-care; providing opportunities for adolescents to express opinions and make informed decisions; having continuity in health personnel; and giving adolescents the option of being seen by professionals without their parents. However, providing adolescent-focused environments, professionals knowledgeable in transitional care and opportunities for young people with JIA to meet similar others were seen as feasible in only a few hospitals.
Conclusions. There is considerable agreement as to the most important elements of transitional care. Those that are easily achievable should be undertaken in all hospitals that care for adolescents with JIA. However, not all elements identified were perceived as easily feasible; further research is required to determine how to implement these elements.
KEY WORDS: Juvenile idiopathic arthritis, Adolescence, Transition, Delphi analysis
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Introduction |
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The need for transitional care in rheumatology is compelling. Over a quarter of juvenile idiopathic arthritis (JIA) cases begin during adolescence and the impact of chronic illness on adolescent development has been well documented [4]. Significant morbidities have also been reported during adulthood [48]. Unfortunately, there is little evidence of what constitutes the optimum service for transition in any chronic childhood-onset illness [9, 10]. In the absence of empirical evidence, the development of such services must draw upon the expertise of legitimate stakeholders, including professionals and patients [11, 12]. This not only ensures that the interests of such people are represented, but also increases ownership of the findings and their influence on practice and policy [11]. Recognizing this, the present study sought to use the Delphi method to determine expert opinions regarding best practice in transitional care and the feasibility of providing such services within a UK context.
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Methods |
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To maximize validity, the Delphi method requires that the panel consist of experts [12]. There is no set criterion as to what defines expert status. However, when chosen carefully, the views of a small number of people can be representative of a target group [11, 14]. It is thought that whilst reliability of the results may decline rapidly with fewer than six panel members, improvements in reliability are relatively small in groups larger than 15 [12].
The panel
The panel consisted of providers [rheumatology health professionals, including rheumatologists and allied health professionals (AHP)] and users (young people with JIA and their parents).
Providers were selected using a two-stage process: (i) the British Paediatric Rheumatology Group (BPRG) were asked to identify individuals from their membership list who were currently practising in rheumatology. To allow for attrition between rounds, researchers then purposefully sampled 23 consultants and 23 AHPs to include professionals from a range of adult and paediatric settings (including specialist and non-specialist centres) and to reflect geographical diversity.
The panel of users was derived from the membership list of the Children's Chronic Arthritis Association (CCAA), who, in order to protect anonymity, were asked to recruit approximately 20 eligible young people with JIA diagnosed for a least 1 yr, aged between 12 and 25 yr, and a parent.
Participants were informed about the nature of the study and told that participation would require them to complete a questionnaire on at least two separate occasions and within specified deadlines. Three individuals (AHPs) felt unable to continue at this stage.
The study had approval from the West Midlands Multicentre Research ethics committee.
Questionnaire
To reduce the numbers of rounds in our study, the questionnaire items were generated from the findings of an earlier needs assessment of transitional needs [15, 16].
Data were collected using a 26-item questionnaire designed for self-completion (Table 2). This was pretested (n = 4) to ensure comprehension and user-friendliness. To increase face validity, young people and their parents were also given a glossary of terms. All panel members were asked to indicate the extent to which they agreed that each statement constituted best care. Health professionals were also asked to indicate the feasibility of each statement. Five-point response scales were used (Table 2) and members were encouraged to provide written clarification of their responses. To maximize independence, young people and their parents were asked to complete their questionnaires separately.
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Procedure
The questionnaire was distributed to all panel members (Round 1). On return, the responses of each subgroup were collated and sent back with a graphical indication of the group's median scores, interquartile ranges and written clarifications. Panel members were subsequently asked to re-score the items in the light of the group's initial responses (Round 2). Reminders were sent to non-respondents.
Analyses
Statistical analyses were performed using SPSS 10.0 (SPSS, Chicago, IL, USA). Analyses were undertaken to determine whether the sample constituted one homogeneous panel or several subpanels. Group differences were analysed using KruskalWallis and MannWhitney tests where appropriate. The level of support for each item was indicated by the median and the level of consensus within each subpanel shown by the mean absolute deviation from the median. The impact of the Delphi technique on final agreement and consensus was examined by assessing change between the first and second rounds using the Wilcoxon's signed ranks test. Statistical significance was set at the 0.01 level to adjust for multiple testing.
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Results |
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One panel or several?
Analyses revealed that the participants did not constitute one homogeneous panel, but several subpanels. Only the parent and young people's groups appeared similar in their mean rankings (with the exception that young people agreed more strongly than parents that adolescents should be allowed to decide who is invited into the consultation room; P = 0.003). It was decided, therefore, that these two groups should be combined to make one composite user panel. However, as their familial relationship means that the two groups could not be considered truly independent, the mean score of each familial pairing was used as a composite user score. Consequently, from this point forward, the Delphi panel comprised three subpanels: consultant, AHP and user.
Best practice
Each group agreed that most items constituted best practice and generally had a high degree of consensus within each group (Table 2). Between-group analyses, however, demonstrated a number of significant differences in the extent to which items were rated as best practice (Table 3). In general, AHPs rated items higher than both the consultants and the users, and users frequently had the lowest median scores. However, for the most part, these differences were only in the strength of agreement (i.e. strongly agree as opposed to agree).
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Between-group analyses showed few significant differences in the ratings of feasibility, although AHPs rated it more feasible to provide transitional care that is delivered by a multidisciplinary team (P = 0.002) and early preparation for transfer to adult rheumatology services (P = 0.001) than consultants.
Best practice versus feasibility
Across the groups, several components of care were strongly agreed to constitute best practice. However, only some were deemed feasible in all/most hospitals (Table 4). Others were perceived as having much less feasibility (Table 5).
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The effect of the Delphi technique on the consensus within the groups was similarly limited. Consensus regarding best practice significantly increased in 3 (12%) items and increased in 5 (19%) items regarding feasibility.
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Discussion |
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Triangulation of the findings with the previous needs assessment [15, 16] and existing policy statements [13] shows a high degree of concordance, and further supports the validity of the findings. Perhaps most importantly, this study provides useful directions for future initiatives; those components deemed important and feasible should be implemented now (Table 4), whereas those rated as important but not feasible (Table 5) should become priorities for subsequent research, development and service commissioning.
Areas of transitional care to be implemented now
Young people's psychosocial and educational/vocational needs
All groups felt that it was important to address young people's psychosocial and educational/vocational needs (Table 2). This is a central tenet of transitional care [13] and is important when one considers that young people with JIA are at risk of unemployment [4, 8] and relationship difficulties [6] compared with controls. Adolescents may have more diverse concerns than health professionals anticipate [17, 18]. However, whilst providers felt it was feasible to address these issues in most, if not all, hospitals, it is likely that specific training will be needed (e.g. knowledge of appropriate referral routes) [3, 19].
An individualized approach
Transition moves at different rates for different people and therefore requires the development of individual transition plans that are developmentally appropriate [1, 20]. The results of this study support these sentiments and echo current proposals [1, 3]. Furthermore, such planning should be anticipatory and be regularly reviewed (Table 2).
An individualized approach may also depend upon key workers to coordinate the planned activities [21] and facilitate inter-agency communication. All groups agreed this constituted best practice, AHPs more strongly than consultants (Table 3). The key worker role has been postulated to be best fulfilled by a nurse specialist [2], although other AHPs may be equally well qualified.
Honest explanations of the adolescent's condition and associated health-care
Several studies report that young people feel that neither parents nor professionals should act as gatekeepers in the disclosure of negative news (e.g. adverse side-effects) [16, 2224]. Barriers to the effective communication of information include interpersonal factors (e.g. lack of comfort with adolescent issues, lack of perceived applicability, ambivalence with respect to role), communication skills of the adolescent and health professional, and structural issues (not routinely seeing adolescent alone, duration and frequency of contact) [24, 25]. Effective communication skills can be learned [26] but need to address a range of practical, attitudinal and behavioural factors [24].
Opportunities for adolescents to express opinions and make informed decisions
The importance of providing opportunities for adolescents to express opinions and make informed decisions is in keeping with guidelines [3, 20] and various legislation [27, 28]. Young people are often unsure of their rights to confidentiality and to accept or decline treatment [16]. Professionals involved with this age-group need to be aware of these issues and to educate young people and their parent(s) accordingly, including the facilitation of the development of self-advocacy skills (Table 2). Related to this are opportunities for free and open access to all available information regarding JIA and related health issues, which was agreed by all groups to be best practice and feasible in most hospitals, again echoing national recommendations [1, 2]. However, in practice, this is not without practical challenges (e.g. provision of sexual health information for adolescents in the out-patient area, where all ages of children are seen). Moreover, paediatricians who are used to younger patients may not appreciate that young adolescents may have specific health concerns and have already established patterns of risky behaviour [29, 30].
Continuity in health personnel
This call for continuity is seen as a key factor in building trust [16, 24] and is particularly pertinent to the developmental stage of this age group as they gradually gain confidence to independently negotiate the health-care system. Continuity is also viewed by young people and their parents as an important prerequisite for the parents eventual withdrawal from their child's consultations [16]. This issue needs to be acknowledged in the development of future rheumatology services for adolescents.
Give adolescents the option of being seen by professionals without their parents
Giving adolescents the option of being seen without their parents was deemed important and feasible by all groups. Of note, however, is that young people agreed with this more strongly than parents (P = 0.003). Discrepancies between parents and health providers opinions in the age for commencement of independent visits have been reported, parents reporting a later start for certain independent behaviours [31]. Only a minority of young people are seen independently in rheumatology clinics [10, 25, 32]. In stark contrast, at least half of their healthy peers are seeing their general practitioner alone by the age of 1415 yr [33]. Independent visits facilitate confidentiality for the young person, which, in primary care, has been reported as a key attribute of adolescent-friendly practice [34]. In one US study, paediatric practices were less likely than family medicine practices to offer confidential services to adolescents [35].
One of the ways to support adolescents independence may be to offer concurrent visits for parents, a concept which was rated higher by users (both patients and parents) than by consultants (Table 3). Parents often have their own transitional care needs and want to talk to members of the team in confidence [16]. Family connectedness is an important factor in the resilience of young people with chronic illness and/or disability [36] and, therefore, an integral component of transitional care. However, whilst AHPs felt concurrent visits to be feasible, consultants felt this was attainable in only some hospitals, perhaps reflecting geographical disparities in multidisciplinary team-working. Concurrent visits have major implications for service provision in terms of staffing and overall consultation time per patient. Such requirements must be communicated to the commissioning authorities if appropriate adolescent rheumatology services are to be developed in the future.
Targets for future research and development
Multidisciplinary teams (consultants only)
The difference in providers regarding the feasibility of transitional care being provided by multidisciplinary teams may reflect AHPs experience of multidisciplinary working. This may also explain why AHPs typically exhibited the greatest strength of agreement regarding best practice. For some rheumatologists, the multidisciplinary team is a virtual one, with links to the AHPs made only via paper referrals. The difference in agreement may also represent variations in the understanding and belief systems about transition. This, in part, is understandable in view of the lack of developments in adolescent rheumatology and transitional care in the UK [10], particularly in respect to training [2, 3, 19]. Future developments in transitional care training must acknowledge the multidisciplinary nature of transition.
Professionals who are knowledgeable about adolescent development
The lack of relevant training [19] may also explain why providers reported limited feasibility of transitional care being provided by professionals who are knowledgeable about adolescent development. Accordingly, the recommendation that adolescent health should be included in both undergraduate and postgraduate curriculums is welcomed [2].
Age-appropriate physical environment and dedicated adolescent environments (e.g. adolescent waiting areas)
Age-appropriate and dedicated adolescent environments were considered by health professionals to constitute best practice but of limited feasibility. Such facilities are currently underdeveloped in UK hospitals [2, 10, 37] and have been called for in the children's NSF [1].
Whilst there are significant barriers to specialized adolescent facilities (fiscal and environmental), improvement of the current situation may require only small changes. When young people in general practice were questioned about the attributes of an adolescent-friendly primary health-care service, the top six attributes were confidentiality, phone advice, written information, a special clinic, friendliness and magazines [34]. Most of these are potentially feasible in adult or paediatric hospitals at minimal cost.
Proving opportunities to meet similar others
Providing opportunities to meet similar others was also reported to be of limited feasibility. This said, the clinic waiting area is a simple, albeit underused, arena for providing such opportunities. Introduction to similar others facilitated by professionals was suggested by young people in a previous needs assessment [16]. Some units have also met this need by residential breaks for teenagers, funded by local charities [38].
Limitations
A number of caveats should be borne in mind. First, findings of a Delphi represent expert opinion, rather than indisputable fact [39, p. 382]. This said, in a relatively new area of health-care with a minimal evidence base, it is imperative to consider such opinion. Secondly, specialists tend to favour interventions with which they are most familiar. Lack of familiarity with the principles and philosophy of transition, against a background of reported training needs in this area [19], may therefore have biased the findings.
With respect to providers, this study did not reflect the full spectrum of potential key stakeholders in adolescent rheumatology transitional care, e.g. primary health-care professionals, education, social services and voluntary agencies. It is reassuring, therefore, that multidisciplinary working, interagency links and educational and vocational issues were supported by the AHPs and/or the consultants as being best practice and/or feasible. Consensus-based guidelines should therefore be interpreted in the context of the speciality composition of the group [12].
Users frequently had the lowest median scores in rating best practice. This may reflect the fact that each user score represented a single familial pairing and hence limited experience of adolescent rheumatology health-care, particularly transitional care. This is compared with the numerous families seen by the providers in their day-to-day work, who may have experience of working in different and geographically diverse settings. It is also possible that the similarity of patientparent responses may be attributable to a lack of independence in the completion of questionnaires. However, whilst independence cannot be guaranteed, the significant difference between patients and parents scores with respect to young people being seen on their own in clinic would support a degree of individual completion.
Using pre-existing information in the development of the questionnaire may also have biased the responses or limited the available options [40]. Moreover, the results may have been influenced by ambiguity in the phrasing of items. For instance, in response to the item Adolescents and parents need early preparation for their transfer to adult rheumatology services (e.g. starting at 11 years) several panel members commented that 11 years was too young. This item was agreed to constitute best practice, but consensus was lower than for many of the other items. In part, this may have been attributable to the level of specificity in the example age given, and greater validity may have been achieved with a more comprehensive pilot study.
Overall, the impact of the Delphi technique on agreement and consensus appeared greatest where feedback was greatest. Thus, future work may benefit by using face-to-face methods that encourage social interaction and give opportunities to probe discordant opinions.
Summary
In summary, this study has defined best practice in transitional care for adolescents with JIA, as perceived by users and providers, and has examined the feasibility of achieving this within a UK National Health Service context. By doing so, it is hoped that the components of best practice identified will be supported by the key clinical groups involved and taken up in clinical practice and policy. Statements seen as best practice and feasible should be implemented now. Statements seen as best practice but not feasible should be the focus of future research and development.
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Acknowledgments |
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The authors have declared no conflicts of interest.
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References |
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