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Cystic fibrosis (CF) adolescent transition is not a new health care issue, yet progress in many areas associated with the transition process has been slow. In Canada, the status of CF transition has not been previously reported. The aim of the present study was to describe the transition from paediatric to adult health care for CF patients in Canada, specifically: availability of adult CF clinic services; average age of transfer from paediatric to adult CF health care; and existing CF transition practices. Results show that access to appropriate adult CF health care in Canada is universal; however, the availability, quantity and quality of CF transition care vary among CF clinics. Over a four-year period, the number of CF clinics using formal transition protocols almost doubled, but more work remains to be performed.
La transition des adolescents ayant la fibrose kystique (FK) n’est pas un nouveau problème de santé, mais dans de nombreux secteurs, les progrès associés au processus de transition sont lents. Au Canada, on n’a jamais fait de rapport sur la situation de la transition en FK. La présente étude visait à décrire la transition des patients du Canada ayant la FK entre les soins pédiatriques et les soins pour adultes, notamment la disponibilité des services dans les cliniques de FK pour adultes, l’âge moyen du transfert des soins pédiatriques aux soins pour adultes et les pratiques de transition actuelles en FK. Les résultats démontrent qu’au Canada, on jouit d’un accès universel aux soins pour adultes en FK, mais que la disponibilité, la quantité et la qualité des soins de transition varient selon les cliniques. Sur une période de quatre ans, le nombre de cliniques de FK faisant appel à des protocoles de transition officiels a presque doublé, mais il reste beaucoup à faire.
Transition – the “purposeful planned movement…from child-centered to adult-oriented health-care systems” (1) – is an important process for any patient with a chronic illness. Cystic fibrosis (CF) is the most common life-limiting genetic condition in Canada and, as recently as 30 years ago, most individuals with CF would not reach adulthood. With the advent of new therapies and the provision of health care based around the concept of multidisciplinary CF clinics, life expectancy continues to rise for individuals with CF, with nearly 60% of CF patients in Canada now older than 18 years of age (2). This dramatic increase in survival has strained adult services attempts to keep pace with the increased adult patient numbers. The need for age-appropriate health care in the form of adult CF services is now well-accepted, if not yet universally practiced. The concept of transition has been widely described and supported from numerous perspectives including patient experiences and satisfaction with transition at individual centres (3–7), as well as health care expert opinions (4,8–10) and position papers (1,11–14). Despite these efforts, only limited progress has been made in practical approaches (11). Few practical models are available to guide health care workers in their provision of what can be termed ‘transition care’ – the work undertaken by health care providers to prepare youth with chronic illnesses (such as CF) for the adult health care system and the management of their health condition into adulthood. With a wealth of general transition literature but a paucity of practical guidelines, it remains unknown how much transition care is actually being practiced. A comprehensive survey of American CF transition practices has recently been completed (15), and found that although the mandate for transition services was strongly supported by CF centres, there was significant variability in the transition support provided to patients. Transfer of care occurred at a median age of 19 years of age, but ranged from 14 to 30 years of age. Many centres allowed patients to delay or decline transition, and the initial discussion regarding transition occurred at the relatively late median age of 17 years. Less than 10% of centres had a written list of desirable self-management skills, and only one-half consistently performed a readiness assessment, which itself lacked comprehensiveness according to the authors.
In Canada – a geographically, socially and culturally diverse country – it has not been reported whether, or to what extent, CF transition care is practiced in individual paediatric CF clinics. The aim of the present study was to describe CF transition care practices in Canada to guide both clinicians and researchers who work with this group of patients.
A survey questionnaire was created to describe CF transition in Canada (Table 1) and was designed to capture specific clinic demographics (size of paediatric CF clinics, age of companion adult CF clinics and age of transfer to adult care), as well as to determine whether transition care was being practiced at individual CF clinics. The survey was reviewed by the University of British Columbia Children’s and Women’s Research Ethics Board (Vancouver, British Columbia) and received approval, and, in 2007, it was sent to all the Canadian paediatric CF clinic nurse coordinators (n=25), including six surveys that were translated into French by CF Canada (formerly the Canadian Cystic Fibrosis Foundation). Returned survey data were collated and analyzed to evaluate demographic data and to assess how many CF clinics provided transition care. The relationship between the availability of transition care and the size or length of time the adult CF clinic had been established (ie, how many years the adult clinic had been in existence) was evaluated.
At the time the survey was conducted, few practical transition models had been published. What constituted a formal transition program in the survey was subject to the responding nurse’s interpretation of whether a clinic used a formal program. To ensure that the interpretation was correct, clinics identified as having a formal CF transition program were required to provide additional information detailing what factors made it a formal transition program and which health care professional was responsible for creating the program.
To assess progress in the provision of CF transition care, transition data were re-evaluated in 2011. The CF clinics that responded to the 2007 survey were asked to update information concerning use of a CF transition program and this was compared with the 2007 survey data.
Survey results were expressed as absolute numbers and percentage of responders. Due to the small sample size, no statistical analysis was performed.
Participating clinics ranged in size from 21 to 275 patients, including those with or without shared care between paediatric and adult clinics, clinics with both newer and older companion adult clinics, and clinics from all regions of Canada. For the 2007 survey, 23 (92%) questionnaires were completed and returned for analysis. The two nonresponding clinics (8%) were small rural clinics from the same province, which had an overall response rate of 71%; the remaining provinces had a 100% response rate. For the review in 2011, updated data were provided by 22 (95%) of the 23 clinics who originally responded.
The survey found that 21 (91%) paediatric CF clinics had a companion adult clinic in the same city. Of the adult clinics, 11 (48%) were located in the same hospital as their companion paediatric clinic. These clinics typically shared one or more CF nursing and/or allied health staff with the paediatric clinic. An additonal 11 (48%) were located in separate facilities with no shared clinic staff.
The adult clinics had been established for three to 38 years (median 16 years), of which eight (38%) had been in operation for more than 15 years. Only two paediatric clinics did not have a companion adult clinic – of these, one routinely transferred patients to an adjacent city’s adult CF clinic, and the other (located in a more remote area) used the outreach services of a CF specialist and nurse who routinely flew in from a large adult CF clinic to see patients. Most Canadian CF patients were transferred to an adult CF clinic at 18 years of age (n=18 [78%] clinics); the remaining clinics transferred patients between 16 and 19 years of age. No exceptions to this age of transfer was reported for six (26%) clinics, while 14 (61%) cited a few exceptions related to patients in end-stage disease and/or patients awaiting lung transplantation. The remaining clinics (n=3 [13%]) either had frequent exceptions, were unsure of the answer or did not provide an answer.
In 2007, only five (22%) paediatric CF clinics used a formalized CF transition program (Figure 1). Additional information was obtained about these programs from all five clinics. All formal programs had been created by a CF nurse and all programs shared two common characteristics: the program was based on current transition literature and/or a transition framework; and written patient goals of transition had been developed. Of the 23 responders, 12 (52%) did not use a formal program but did employ a small number of ‘informal transition practices’ that varied among the clinics. Some ‘practices’ were more of a general philosophy of care, such as “we promote independence at an early age” while others were very specific, such as “the nurse accompanies the patient to their first adult clinic visit” or “we start to describe similarities and differences between our clinic and the adult clinic [at] around age 15 years”. No centre listed more than three informal transition practices used by their clinic. A ‘transition clinic’ was offered by six (26%) clinics, which was a form of handover clinic in which the youth and family have the opportunity to meet members of the adult CF health care team in advance of their first adult clinic appointment. The transition clinic itself was either a component of a larger formalized transition program (four of the five clinics with a formal program used transition – also called ‘graduation’ – clinics), or offered as an ‘informal transition practice’, which may have been the only form of transition care provided at that clinic. In 2007, six (26%) Canadian paediatric CF clinics did not use either a formal transition program or informal transition practices (ie, transition care was not offered at these clinics).
On review in 2011, this had improved (Figure 1). The number of paediatric CF clinics that used a formalized CF transition program had almost doubled (nine [41%]), more than one-half (12 [55%]) employed ‘informal transition practices’ and, of these, three were working on the creation of a formal program. Only one clinic did not offer any type of transition care.
There were no differences found in the level of transition care offered (formal program versus informal practices) based on paediatric CF clinic size (Figures 2A and 2B) or age of companion adult CF clinics (Figures 3A and 3B).
The present study is the first to describe Canada’s CF transition care practices. The survey provides an informative overview of the availability of adult CF health care services in relation to their paediatric counterpart, as well as the level of transition care offered and progress made over a four-year period. Given the high response rate, the survey findings can be considered to be representative of Canadian CF clinics.
Canadian paediatric CF clinics appear to have confidence in the adult model of CF clinic care in Canada, as demonstrated by the fact that most young adults were transferred by 19 years of age. This is in contrast to regions outside of Canada where some adult patients continue to be cared for by paediatric centres despite the widespread opinion that adults with CF are best served by adult-oriented CF services (15–17). Chronological age continues to be the most cited criteria for transfer readiness (8,15). Most clinics in Canada transferred at 18 years of age, which corresponds with the age that most youth graduate from high school, which implies a general developmental readiness to transfer to adult health care. In certain cases, it may also be the age after which funding mandates limiting services at a paediatric hospital (4). The concept of ‘one age fits all’ for timing of patient transfer is disputed by some who maintain that individual patient development and preference should be taken into account (3,18); however, there is currently a lack of data demonstrating which age is ideal or whether age alone should be the determining factor for timing of transfer. The more recent emergence of ‘readiness assessment tools’ warrants added attention.
From 2007 to 2011, there was a trend toward increased provision of transition care; however, more than one-half of Canadian paediatric CF clinics still did not use a formal program in 2011. These results are of interest given the widely accepted belief in the value of good transition planning that is developmentally appropriate, started early, and addresses both the skills and knowledge necessary for an adolescent to manage their health condition into an adult-oriented health care setting (1,16,17,19). The small numbers of formalized Canadian CF transition programs is also consistent with data from the United States (15) and may reflect the fact that transition is a complex and multifaceted process, and while there may be sufficient supportive and descriptive data, there are few transition models published to guide clinical staff in their transition care. To address this deficiency, McLaughlin et al (15) identified discrete activities that encompass transition care and, from this, developed a conceptual model of transition. Their model reflects the complexity of the adolescent transition process and helps to ensure that the key elements of transition planning are not missed. The survey was intended to evaluate the number of Canadian CF centres offering a formal transition program. It did not aim to evaluate the quality or comprehensiveness of the Canadian CF transition programs. The main reason this was not undertaken at the time of the original survey was due to the lack of published transition models against which to compare, such as the McLaughlin et al (15) framework or the recent transition-planning algorithm published by the American Academy of Pediatrics (11).
More than one-half of the Canadian CF clinics reported the use of informal transition practices (a maximum of three per clinic were listed) but no formal program. This suggests that there is recognition of the value of at least some transition planning and, is perhaps, a starting point for these clinics. What leads some clinics to develop transition programs but not others? Do significant barriers remain? The availability of a formalized CF transition program did not appear to be associated with the size or age of the CF clinic or geographical location.
To foster a ‘culture of transition’, the entire multidisciplinary team should be engaged in the transition process, and transition care should be valued as a legitimate multidisciplinary responsibility. The ‘On TRAC’ model for chronic diseases care described by Paone et al (17,20) suggests that someone must ‘champion’ the transition movement for their health care team. The United States transition survey found that fewer than one-half of CF centres designated a specific team member to be responsible for key elements of transition (15). The survey found that the CF clinic nurse was responsible for initiating the formal transition program (occasionally with the help of a clinic social worker).
One aspect that was identified by some clinics as their only, or main, transition practice, and by others as part of a larger formal transition program was the ‘transition’ or ‘graduation’ clinic. Although the format is not standardized across the country, these are typically the final paediatric clinic appointments at which one or more adult CF team members attend, and provide an opportunity for patients and their parents to meet the adult CF team before transfer. A survey identified this as an important aspect and found significantly higher levels of concern in patients who had not previously met the adult team (21). While transition or graduation clinics support the transition process, they should be considered one component of a larger formal transition program and not the only form of transition planning.
The practice of sharing health care staff between paediatric and adult clinics usually occurred in smaller Canadian clinics. An advantage of using shared staff is the security afforded to CF youth and their parents, whose change to an adult CF specialist is tempered by the fact that one or more allied staff will continue to care for them. This makes the transition process less stressful for the patients and families. However, this may be a barrier to successful transition due to paediatric staff who do not want to ‘let go’ of their patient, and may create the potential to neglect fostering of independence in the young adult with CF. The impact on successful transition outcomes of sharing staff has not been reported, but the use of a formal transition program should substantially help to address the independence issue.
The present survey focused on the transition care of paediatric CF patients; however, transition care in adult CF clinics also requires attention. It is reasonable to assume that, along with adolescence, the transition process continues beyond 18 years of age and that most CF patients will need further adaptation to the adult care model after transfer to the adult setting (22). CF patients 19 to 24 years of age may benefit from a young adult transition program, which reflects their stage of development and enables them to practice and integrate the skills that were taught in the paediatric setting (20). Failure of the adult-oriented health system to accommodate an individual’s needs on transfer, despite the patient being willing and prepared, may result in an unsuccessful transition (16).
Presently, there is little doubt that preparing for a successful transfer of care from paediatric to adult-oriented health care settings is a complex undertaking. Small steps over time will make a difference with the ultimate goal of strong CF transition care being common practice in the near future.
The authors thank Cystic Fibrosis Canada for translating the survey into French and, in particular, Ian McIntosh for his assistance. The authors thank the CF team at British Columbia Children’s Hospital (Vancouver, British Columbia) for their support and suggestions, and gratefully acknowledge the 23 paediatric cystic fibrosis clinics in Canada that participated in the survey.