Transition to Adult Congenital Heart Disease Care a Review
Abstruse
The vast majority of children with congenital heart disease (CHD) in loftier-income countries survive into adulthood. Further, paediatric cardiac services take expanded in centre-income countries. Both evolutions have resulted in an increasing number of CHD survivors. Expert care across the life bridge is necessitated. In boyhood, patients transition from being a dependent child to an independent developed. They are besides advised to transfer from paediatrics to adult care. There is no universal consensus regarding how transitional intendance should be provided and how the transfer should be organized. This is even more challenging in countries with low resource. This consensus document describes issues and practices of transition and transfer of adolescents with CHD, accounting for different possibilities in high-, middle-, and low-income countries. Transitional intendance ought to be provided to all adolescents with CHD, taking into consideration the available resource. When reaching adulthood, patients ought to be transferred to developed intendance facilities/providers capable of managing their needs, and systems have to exist in identify to make certain that continuity of high-quality care is ensured after leaving paediatric cardiology.
Transfer and transition in congenital heart disease.
Transfer and transition in built heart disease.
ane. Introduction
Congenital middle disease (CHD) is the nearly mutual birth defect, with a global nascency prevalence of 8.ii per 1000 newborns. i In high-income countries, 90% of afflicted children can reach adulthood. ii , 3 Although CHD survival continues to be rare in low-income countries, increasing access to paediatric cardiac surgery in middle-income countries has resulted in a small merely growing number of teens and adults living with moderate and complex CHD. Consequently, patients and families need to exist prepared for the emerging adulthood. Boyhood is an important transitional phase for all immature persons, and especially for those with chronic medical weather condition, because on summit of the normal developmental processes, they need to acquire knowledge and skills to independently manage their health.
Treatment and follow-up of children with CHD are performed by paediatric cardiology teams in paediatric settings. When patients are growing older, transfer to a setting that is age- appropriate and developmentally suited is advocated. This care is ideally provided in a specialty adult built eye illness (ACHD) programme to ensure sufficient expertise in the needs of adults with CHD.
Studies indicated that the transfer to adult intendance in CHD is often associated with pause in cardiac follow-up four and that patients are insufficiently supported during their transition to machismo. 5 , 6 Most heart-income countries are withal developing paediatric cardiac care systems, and ACHD programmes and/or clinicians are rarely available. 7 However, the association betwixt ACHD intendance maintenance and ameliorate outcomes is well-established, and all settings should aspire to an organized and co-ordinated process that prepares built center patients to independently manage their life-long care needs (Graphical abstract)
The aim of this consensus certificate is to talk over issues and practices of transition and transfer of adolescents with CHD, which can be adapted as needed for use in loftier- and depression-resources settings.
ii. Terminology and definitions
When addressing transition in adolescents, several terms are of relevance. To accept a compatible understanding, the conceptual definitions of adolescence, emerging machismo, transition, transfer, transitional care, and transition programme are given in Box i. viii–thirteen
Box 1 Glossary of terms
Boyhood is a developmental period ranging from age 10 to 24 years that is characterized past biological growth and social function transitions. eight
Emerging adulthood is a phase of the life bridge between boyhood and full-fledged adulthood, which encompasses late adolescence and early adulthood and ranges from age 18 to 29 years. nine , 10
Transition is a passage from one life phase, physical status, or social role to another, resulting in a temporary disconnectedness of the normal way of living, which demands an adjustment of the person and the environs. 11 , 12
Transfer is an upshot or series of events through which adolescents and young adults with chronic concrete and medical conditions move their intendance from a paediatric to an adult healthcare environment. thirteen
Transitional intendance is the provision of interventions that attends to the medical, psychosocial, and educational/vocational needs of adolescents as they move from being a dependent child towards an independent adult, with the aim to prepare the adolescents to take charge of their lives and their health in adulthood.
Transition programme is a set of co-ordinated transitional care interventions that are provided in a structured admitting individualized way, in order to support the procedure of the transition to machismo and achieve the outcomes of transition.
Transition policy is a written certificate that sets out principles, standards and practices of how transition is managed at the centre.
Transition plan is a working document that records findings of assessments, describes the progress in transition, and outlines planned actions to achieve predefined goals.
3. Adolescents with built heart disease and their needs
3.1 The adolescent brain and mastering developmental tasks
Brain development in children and adolescents shows a regional and sex-specific course. Sensory and motor encephalon areas develop first, followed by a posterior to anterior maturation. 14 Every bit a result, during adolescence, at that place is an imbalance between the limbic system, which is the commuter for emotions, motivation, and behaviour, and the prefrontal control. fifteen Cortical evolution in girls occurs before than in boys, due to differences in types and timing of sex activity hormones. Trophic changes in medial temporal regions explain higher risk-taking behaviours in boys. 16
Aslope these physical changes, societal demands and expectations also increase during adolescence. Adolescents demand to principal specific developmental tasks, in order to found a personalized identity. 17 , eighteen , Figure 1 represents common developmental tasks of boyhood. 19 , twenty Adolescents with CHD have the aforementioned developmental tasks equally healthy peers. However, having a middle defect and dealing with the condition in day-to-day life are extra stressors.
Figure ane
Developmental tasks of adolescence. Adjusted from Havighurst xix and Lerner and Galambos. twenty
Effigy one
Developmental tasks of boyhood. Adjusted from Havighurst xix and Lerner and Galambos. 20
People with intellectual disabilities course a specific group in the CHD population, and present with special needs. When transitioning adolescents with intellectual disabilities, it is fifty-fifty more important to adopting developmental and systems perspectives in transitional care. Healthcare providers should be enlightened of specific developmental challenges that both patients and their families experience during this phase in life. 21 Especially, in these patients and families, transition is an overwhelming process. 22 Parents are critical to make the transition happening, and therefore they need support from the healthcare professionals to get in endurable. 22
3.2 Behavioural factors
Risk behaviour in adolescents volition oft pose more threats to those affected with CHD. Overall, health behaviours in adolescents with CHD seem to be better than in similarly aged peers. 23 , 24 Yet, counselling patients on wellness behaviours is key to further improving their outcomes. 25 Nonetheless, keeping the rest between avoiding complications without unnecessarily burdening patients with feelings of being different is vital. 26
3.iii Continuous cardiac care
With a few exceptions, patients with CHD are in demand of life-long follow-up. Nevertheless, interruptions in care occur in three.6–62.7% of young patients with CHD 4 and are associated with increased morbidity and urgent reinterventions. 27 Demographic, patient-specific, socio-economical, and healthcare system factors play a part in the occurrence of care gaps and require proper direction. 28 Information technology is suggested that the frequency and care level of follow-upwardly is determined in consultation with a CHD proficient middle. 29
iv. Transitional care: what does the testify show?
International good panels have identified multiple outcomes of transitional care, respective with the goals of transition (Figure 2). 30 , 31 Transition interventions ought to be adult and implemented with these goals in listen. These outcomes can exist the master or secondary endpoints, when evaluating the furnishings of transitional intendance.
Figure two
Outcomes of transitional care for adolescents with chronic conditions. Adapted from Fair et al. 30 and Suris and Akre. 31
Figure 2
Outcomes of transitional treat adolescents with chronic conditions. Adapted from Off-white et al. thirty and Suris and Akre. 31
The trunk of evidence on transfer and transition in adolescents with chronic conditions is all-encompassing. 32 However, the level of bear witness is rather low, with only a few studies investigating the effectiveness of transitional intendance using (quasi)-experimental designs. 32 , 33 Show is especially lacking from low- and centre-income countries. 32 In CHD, the results of two trials on the furnishings of transition have been published so far. The Chapter 1 (Congenital Centre Adolescents Participating in Transition Evaluation Inquiry) study found that a 1-h nurse-led transition intervention resulted in improved self-direction and cardiac knowledge. 34 In the Affiliate 2 study, 2 nurse-led sessions were held with a ii-month interval. 35 In the intervention group, the filibuster in ACHD care was lower and CHD knowledge as well as self-direction skills improved. 35
A further of import step in providing prove is the STEPSTONES project. 36 , 37 This is an ongoing project testing the effectiveness of a transition programme, combined with process and economic evaluations. STEPSTONES is the first transition plan that is constructed using the methodology of intervention mapping. 38
Although the show on the effectiveness of transition programmes in CHD is express, there is evidence on the effects of detail transitional care interventions. For case, it has been shown that interventions are able to improve the knowledge, 39–42 self-management, 41 continuity of care, 43 , 44 and functional status of people with CHD. 43 This testify, together with findings from other chronic weather, 32 , 33 requite a proof of concept that transitional intendance is effective.
5. Empowering patients and families
An important goal of the transition is to empower patients and families. 45 Empowerment tin can be defined every bit 'an enabling process or consequence arising from advice with the healthcare professional person and a mutual sharing of resources over data relating to affliction, which enhances the patient's feelings of control, cocky-efficacy, coping abilities and power to achieve modify over their condition'. 46 Patient empowerment aims at increasing autonomy, patient participation, sensation, and consciousness, besides as the development of relevant psychosocial skills. 47 As a outcome, a higher level of patient empowerment is associated with improved quality of life, well-being, and clinical outcomes. 48 In CHD, empowerment is associated with transition readiness and improved communication with healthcare providers. 49 Therefore, empowerment can be a target for intervention in transition, and information technology can be seen equally an intermediate outcome, which indirectly improves the ultimate transition outcomes (Figure two).
6. Different transition models
At that place are different models for transition in CHD, each having particular characteristics (Figure 3). The 'joint clinic model', 'paediatrician-in-adult-intendance model', and 'introductory model' are rather 'transfer models' because the focus is on handing over the adolescent from paediatrics to adult care, and fiddling room is given to the developmental process that is inherent to transition to machismo. Alternatively, the 'transition coordinator model' is taking the developmental process equally the core, accompanies the adolescent in the transition to adulthood, and provides comprehensive transitional care. In this model, the transition is not necessarily stopping when the patient is transferred.
Figure 3
Models for transition.
Figure 3
Models for transition.
The 'transition coordinator model' is the preferred model, considering information technology comprehensively addresses the challenges of transition. Of course, the choice of model depends on the resources and competencies bachelor in the country and the centre. The lack of trained ACHD providers, especially in low- and middle-income settings seven requires some centres to keep patients under paediatric surveillance. 50 In such cases, the adoption of an adult-centred approach within the established paediatric care setting is important. 51
seven. How to transition and transfer adolescents with centre disease
Transitional care should start in early boyhood and continues into emerging adulthood (come across definitions in Box ane) (Figure iv). It is to be provided in three distinct phases: pre-transition, transition, and mail-transition. It is advocated that the pre-transition phase starts in early adolescence, to have the highest bear upon. 51 At specific ages, certain key interventions take to be implemented and milestones have to exist accomplished. 51 Notwithstanding, to individualize transitional care towards the developmental stage of the patient and to account for the possibilities of the centre, there is flexibility in the ages at which the milestones take to exist achieved. By compiling these key interventions in a structured way, a transition programme is constructed (come across definition in Box 1).
Figure 4
Components of transition and proposed timing for implementation.
Figure 4
Components of transition and proposed timing for implementation.
7.i Pre-transition introduction
Effectually the age of 12 years, the planned transition process and the transfer policy need to be introduced to the patient and parents/guardian (Figure 4). 51 This introduction can be given during a scheduled outpatient visit or by sending an introduction letter to the parents (run across example: Supplementary material online, Certificate S1).
7.two Assessment of needs and progress
As of the age of 14 years, the needs of the boyish should be comprehensively assessed. The structure of the HEADDDSS psychosocial interview guide for adolescents tin be practical. HEADDDSS stands for Home, Education, Activities, Diet, Drugs, Depression, Sexual practice, and Safety. 52 This health interview gives insights into the living circumstances and lifestyle of the adolescent and allows an understanding of the capacities and problem areas of the adolescent. Supplementary fabric online, Tabular array S1 gives first-line and follow-upward questions for each of the domains of HEADDDSS. These questions should not to exist addressed in an exhaustive way, just they should rather guide the interview. During the transition, the progress of the needs and capacities has to be followed upwards. This progress is sometimes called transition readiness. 53
vii.three Counselling and education
Based on the data obtained from the assessments, patients should actively and repeatedly be involved in teaching and counselling activities. Education and counselling have to adopt adolescent-friendly communication styles 54 and they should cover medical, psychosocial, and behavioural topics: CHD direction and the need for life-long medical follow-up; healthy lifestyle choices (e.g. booze consumption, smoking, substance use); reproductive issues (e.grand. recurrence risk and family planning); physical activity; vocational advice; endocarditis prevention and prophylaxis; and advance care planning as appropriate. 55–58 Discussions of sexuality and contraception should be responsive to the cultural and religious beliefs of the patients and families. In some countries, counselling regarding military machine service has to exist included. Several formats and tools, such as cardiac diagrams, medical summary, patient-tailored wellness passport, smartphone application, written booklets, and web-based education programmes, can be practical in practice. 59–61 Goal-setting and the utilize of shared direction 62 are specific strategies to empower patients and enabling them to function well in daily life. 63–65
7.iv Developing and working with a transition plan
Both the assessment and the counselling efforts should be documented in a transition plan (see definition in Box 1). Components to be included in such a transition programme are summarized in Box ii. This transition plan is a working document and is to be completed throughout the transition process (run across instance in Supplementary material online, Certificate S2).
Box 2 Essential components of a transition program
-
Demographic data of the patient
-
Contact information to caregivers
-
Persons of importance to the adolescent
-
Need of special support and ongoing care
-
Degree of parental involvement in the transition program/process
-
Brief report of current medical condition
-
Preparations for the visit with the transition co-ordinator
-
Recommendations regarding prognosis, physical activities, drugs, family planning, endocarditis prevention, future need of interventions and follow-up, choice of profession, travelling, and driving license
-
Reporting of the HEADDDSS (Dwelling house, Instruction, Activities, Diet, Drugs, Depression, Sex, and Safety)
-
Goals for transition, own resource, and capacities and need of support equally expressed by the patient
-
Reporting of accommodations designed for learning and functioning, discussed with schools and comprehensive disability services
7.5 Facilitating peer contact
Adolescents with chronic conditions often want an opportunity to come across and talk with peers who are in the same situation. 66–68 If possible, it is important to facilitate such peer contact. Some centres work with youth ambassadors or local patient organizations to support peers, 69 , 70 whereas others organize almanac adolescent days 36 , 71 or summer/weekend camps. 72 In areas in which stigma prevents in-person meetings, connecting with peers via social media or instant messaging tools tin exist encouraged.
7.half-dozen Introducing the developed congenital eye disease squad
A critical component of transition is that patients and families are introduced to the ACHD team, the outpatient clinic, and the flow of an ACHD outpatient visit. 66 , 73 , 74 This first contact is decisive for successful transfer. 73 Such an introduction can be done by a guided visit at the ACHD outpatient clinic, a personal meeting with the ACHD squad, a brochure/flyer, or a virtual presentation on slides or video.
7.7 The transfer to adult intendance
At a certain moment, patients need to be transferred to adult intendance. In areas in which ACHD intendance is available, an active referral to an ACHD team is strongly preferred over merely informing the patient about the nearest ACHD middle. A transfer letter including a complete medical summary should be given to the patients and the taking-over ACHD team. It is argued that all patients should exist seen at least once in a specialized ACHD centre. 29 In regions of the world where these practice non exist, patients should be referred to physicians with some training in ACHD. 75 The ACHD team will and so decide upon the level of care and follow-upwards intervals. 29 The optimal historic period for transfer is 18–nineteen years, because this is associated with improved outcomes. 76 Even so, patient preferences showed that an earlier transfer at xvi–17 years may be appropriate as well. 73 , 77 Irrespective if a predefined age is used to transfer patients to adult care, the developmental competencies of the adolescents should exist taken into consideration. For some adolescents, an earlier transfer could be appropriate, whereas for others, the transfer should be delayed to requite them the chance to further develop the required knowledge and skills. Whatsoever age the patient is transferred, the transition process should not finish with transfer to adult care. The continuation of transitional care then is the responsibility of the ACHD squad, together with the transition co-ordinator. Information technology is, therefore, important that ACHD programmes bring in expertise in transitional care to ensure the continuation of transition and to help patients to integrate in adult life and care.
7.eight Monitoring continuity of care
To go along patients in follow-upwardly, it is advised that the paediatric squad defines the timing of the next visit to the ACHD team and an invitation is sent to the patient. 78 If patients miss their first transfer appointment, the ACHD squad should have a reminder system in place considering adherence to the first appointments in developed intendance is a predictor for continuity of care. 28 Short text bulletin reminders, for instance, have been demonstrated to increase healthcare appointment omnipresence. 79 In example of no-testify, defended administrative staff ought to be vigilant and ensure that these patients receive a new invitation.
seven.9 Guidance of parents
Transition is often more challenging for parents than for the adolescents. 73 , fourscore Indeed, parents are required to change their behaviours and get accustomed to their changing role. 63 , 80 Specific back up for parents during transition is primal and will not only reduce parental stress and feet just may also event in better transition outcomes for the adolescents because parents are meliorate equipped to empower their child. Information provided to parents should be bachelor in appropriate languages and formats. Given that parents may come up from culturally diverse backgrounds, additional material that is culturally appropriate and adapted to their wellness literacy level is required. Guidance of parents during the transition should accost the topics described in Supplementary fabric online, Box S1.
8. Structural requirements/composition of teams
viii.i Human resources
Paediatric and ACHD cardiologists take a pivotal role, since the paediatric team initiates the transition process and developed care providers carry on with the procedure. Equally the 'transition coordinator model' is the preferred model to provide comprehensive transitional care, a transition co-ordinator is a disquisitional player. 81 Although no specific professional person/educational requirements are formulated, advanced do nurses are well placed to be transition co-ordinators 55 , 82 , 83 because they are trained to perform health interviews, address psychosocial bug, and offer instruction. 84–86 Furthermore, such masters-prepared nurses have organizational skills that are essential in this role. 86 It is important that transition co-ordinators receive specific training in boyish health. 51 Depending on patients' needs, other disciplines may be involved: psychologists, social workers, occupational therapists, physical therapists, or speech and language therapists.
Administrative back up for the transition plan is indispensable. In centres where there is no transition co-ordinator bachelor, authoritative services may review the procedure 87 and at least make sure that continuity of care is monitored and patients are kept in follow-up. Which structures come into use volition depend on the system and personnel resources of the centre. Small or depression-resource centres may not be able to allocate all desirable human resources. As an instance of transition in a centre-income country, the case of South Africa is presented in Supplementary cloth online, Box S2.
Although transition in CHD entails specialized care providers, also chief care providers have an important office in the transition. 51 , 88 Working collaboratively with CHD specialists, primary care providers are in a unique position to provide intendance across the historic period span and be a consistent presence for the patients every bit they go out paediatric care and enter the adult-oriented healthcare system. They tin can also ensure successful transfer and retention in ACHD care past monitoring ACHD clinic attendance.
8.two Structural requirements
Structural elements of healthcare programmes encompass concrete, organizational, and other organisation characteristics. 89 The following documents are important structural elements:
-
A written transition policy, which is a document that sets out principles, standards, and practices of how the transition is managed at the heart, which incorporates (i) direction agreements between paediatric and ACHD intendance; (ii) clarification of patient population and criteria of inclusion; (three) intensity of transition intervention; (four) family inclusion; (v) competencies of staff, (vi) didactics aids; (vii) liaison with schools and comprehensive disability services for those in demand; (8) possibilities for telehealth; (ix) billing; and (x) monitoring systems.
-
A transition plan, which is a working document that records findings of assessments, describes the progress in transition, and outlines planned actions to reach predefined goals. Components that should exist included in a transition programme are described in Box ii. The Set up-Steady-Go project in the UK (www.uhs.nhs.united kingdom/readysteadygo) developed a generic transition program. It comprises assessments about cognition and skills over time, and progress notes can exist made (see Supplementary material online, Document S2). These Ready-Steady-Become tin serve equally an example and a footing for developing CHD-specific transition plans.
9. Conclusion
Transitional care and the transfer to adult care settings are of import for all adolescents with CHD. Available resources volition make up one's mind which components of transition programmes can be implemented, and who volition be able to perform this. Regardless, systems must be in place to ensure that continuity of care is ensured later on leaving paediatric cardiology.
Supplementary fabric
Supplementary textile is available at European Heart Periodical online.
Funding
The authors study no specific funding related to this article.
Conflict of interest: none declared.
References
i
Liu
Y
, Chen South Zuhlke L Blackness GC Choy MK Li N Keavney BD.
Global birth prevalence of congenital heart defects 1970-2017: updated systematic review and meta-analysis of 260 studies
.
Int J Epidemiol
2019
;
48
:
455
–
463
.
two
Moons
P
, Bovijn L Budts W Belmans A Gewillig Thou.
Temporal trends in survival to adulthood among patients born with built heart disease from 1970 to 1992 in Belgium
.
Apportionment
2010
;
122
:
2264
–
2272
.
3
Mandalenakis
Z
, Giang KW Eriksson P Liden H Synnergren M Wahlander H Fedchenko M Rosengren A Dellborg G.
Survival in children with congenital middle disease: have we reached a peak at 97%?
J Am Heart Assoc
2020
;
9
:
e017704
.
iv
Moons
P
, Skogby S Bratt EL Zuhlke L Marelli A Goossens East.
Discontinuity of cardiac follow-upwardly in immature people with built heart disease transitioning to adulthood: a systematic review and meta-analysis
.
J Am Heart Assoc
2021
;
ten
:
e019552
.
five
Hilderson
D
, Saidi AS Van Deyk One thousand Verstappen A Kovacs AH Fernandes SM Canobbio MM Fleck D Meadows A Linstead R Moons P.
Attitude toward and current practice of transfer and transition of adolescents with congenital heart affliction in the United states of america of America and Europe
.
Pediatr Cardiol
2009
;
thirty
:
786
–
793
.
6
Thomet
C
, Schwerzmann Thousand Budts W De Backer J Chessa Thousand Diller Chiliad Eicken A Gabriel H Gallego P Giamberti A Roos-Hesselink J Swan 50 Webb G Moons P
Transfer and transition practices in 96 European developed built heart disease centres
.
Int J Cardiol
2021
;
328
:
89
–
95
.
7
Kempny
A
, Fernandez-Jimenez R Tutarel O Dimopoulos K Uebing A Shiina Y Alonso-Gonzalez R Li Due west Swan L Baumgartner H Gatzoulis MA Diller GP.
Meeting the challenge: the evolving global mural of adult congenital middle disease
.
Int J Cardiol
2013
;
168
:
5182
–
5189
.
8
Sawyer
SM
, Azzopardi PS Wickremarathne D Patton GC.
The age of adolescence
.
Lancet Kid Adolesc Wellness
2018
;
2
:
223
–
228
.
9
Arnett
JJ.
Emerging adulthood. A theory of evolution from the late teens through the twenties
.
Am.Psychol
2000
;
55
:
469
–
480
.
10
Arnett
JJ
, Žukauskienė R Sugimura Thousand.
The new life stage of emerging machismo at ages 18-29 years: implications for mental health
.
Lancet Psychiatry
2014
;
1
:
569
–
576
.
11
Meleis
AI.
Transitions Theory: Centre-Range and Situation-Specific Theories in Nursing Inquiry and Practice
.
New York, NY
:
Springer Publishing Visitor
;
2010
.
12
Schumacher
KL
, Meleis AI.
Transitions: a central concept in nursing
.
Image J Nurs Sch
1994
;
26
:
119
–
127
.
13
Knauth
A
, Verstappen A Reiss J Webb GD.
Transition and transfer from pediatric to developed care of the young adult with circuitous congenital heart disease
.
Cardiol Clin
2006
;
24
:
619
–
629
.
fourteen
Lenroot
RK
, Giedd JN.
Brain development in children and adolescents: insights from anatomical magnetic resonance imaging
.
Neurosci Biobehav Rev
2006
;
xxx
:
718
–
729
.
15
Casey
BJ
, Getz S Galvan A.
The adolescent encephalon
.
Dev Rev
2008
;
28
:
62
–
77
.
16
Bramen
JE
, Hranilovich JA Dahl RE Chen J Rosso C Forbes EE Dinov ID Worthman CM Sowell ER.
Sexual activity matters during boyhood: testosterone-related cortical thickness maturation differs between boys and girls
.
PLoS One
2012
;
7
:
e33850
.
17
Luyckx
K
, Goossens E Van Damme C Moons P;
Identity formation in adolescents with congenital cardiac disease: a forgotten issue in the transition to machismo
.
Cardiol Immature
2011
;
21
:
411
–
420
.
18
Miatton
Grand
, Sarrechia I. Schwerzman 1000 Thomet C Moons P
Built Heart Affliction and Boyhood
.
Cham
:
Springer
;
2016
. p
61
–
82
.
xix
Havighurst
RJ.
Developmental Tasks and Teaching
. third ed.
New York, NY
:
McKay
;
1948
.
20
Lerner
RM
, Galambos NL.
Experiencing Adolescents: A Sourcebook for Parents, Teachers, and Teens
.
New York, NY
:
Teachers College
;
1984
.
21
Ally
Southward
, Boyd 1000 Abells D Amaria One thousand Hamdani Y Loh A Niel U Sacks Southward Shea Due south Sullivan WF Hennen B.
Improving transition to adulthood for adolescents with intellectual and developmental disabilities: proactive developmental and systems perspective
.
Can Fam Doc
2018
;
64
:
S37
–
S43
.
22
Brown
G
, Higgins A MacArthur J.
Transition from child to adult health services: a qualitative report of the views and experiences of families of young adults with intellectual disabilities
.
J Clin Nurs
2020
;
29
:
195
–
207
.
23
Reid
GJ
, Webb GD McCrindle BW Irvine MJ Siu SC.
Health behaviors amidst adolescents and young adults with congenital heart disease
.
Congenit Centre Dis
2008
;
three
:
16
–
25
.
24
Goossens
Due east
, Luyckx K Mommen N Gewillig Yard Budts Due west Zupancic N Moons P
Wellness risk behaviors in adolescents and emerging adults with congenital heart disease: psychometric properties of the Health Behavior Calibration-Congenital Heart Disease
.
Eur J Cardiovasc Nurs
2013
;
12
:
544
–
557
.
25
National Academies of Sciences Engineering and Medicine.
Promoting Positive Adolescent Health Behaviors and Outcomes: Thriving in the 21st Century
.
Washington, DC
:
The National Academies Press
;
2020
.
26
Claessens
P
, Moons P de Casterle BD Cannaerts Due north Budts W Gewillig M.
What does it hateful to live with a congenital centre disease? A qualitative written report on the lived experiences of developed patients
.
Eur J Cardiovasc Nurs
2005
;
four
:
3
–
10
.
27
Yeung
E
, Kay J Roosevelt GE Brandon M Yetman AT.
Lapse of care equally a predictor for morbidity in adults with congenital center disease
.
Int J Cardiol
2008
;
125
:
62
–
65
.
28
Goossens
E
, Bovijn L Gewillig M Budts W Moons P.
Predictors of care gaps in adolescents with complex chronic condition transitioning to adulthood
.
Pediatrics
2016
;
137
:
e20152413
.
29
Baumgartner
H
, Budts W Chessa M Deanfield J Eicken A Holm J Iserin 50 Meijboom F Stein J Szatmari A Trindade PT Walker F
Recommendations for organization of care for adults with congenital heart affliction and for training in the subspecialty of 'Grown-upwards Congenital Heart Affliction' in Europe: a position paper of the Working Grouping on Grown-upwardly Built Center Disease of the European Society of Cardiology
.
Eur Center J
2014
;
35
:
686
–
690
.
30
Fair
C
, Cuttance J Sharma N Maslow Grand Wiener L Betz C Porter J McLaughlin S Gilleland-Marchak J Renwick A Naranjo D January S Javalkar K Ferris Chiliad
International and interdisciplinary identification of health care transition outcomes
.
JAMA Pediatr
2016
;
170
:
205
–
211
.
31
Suris
JC
, Akre C.
Key elements for, and indicators of, a successful transition: an international Delphi written report
.
J Adolesc Health
2015
;
56
:
612
–
618
.
32
Acuna Mora
M
, Saarijarvi M Moons P Sparud-Lundin C Bratt EL Goossens East.
The scope of enquiry on transfer and transition in young persons with chronic weather condition
.
J Adolesc Wellness
2019
;
65
:
581
–
589
.
33
Campbell
F
, Biggs One thousand Aldiss SK O'Neill PM Clowes Yard McDonagh J While A Gibson F.
Transition of care for adolescents from paediatric services to developed health services
.
Cochrane Database Syst Rev
2016
;
4
:
CD009794
.
34
Mackie
Every bit
, Islam Due south Magill-Evans J Rankin KN Robert C Schuh M Nicholas D Vonder Muhll I McCrindle BW Yasui Y Rempel GR.
Healthcare transition for youth with eye affliction: a clinical trial
.
Middle
2014
;
100
:
1113
–
1118
.
35
Mackie
AS
, Rempel GR Kovacs AH Kaufman Thou Rankin KN Jelen A Yaskina Thou Sananes R Oechslin E Dragieva D Mustafa S Williams E Schuh Thou Manlhiot C Anthony SJ Magill-Evans J Nicholas D McCrindle BW.
Transition intervention for adolescents with congenital middle disease
.
J Am Coll Cardiol
2018
;
71
:
1768
–
1777
.
36
Acuña Mora
Grand
, Sparud-Lundin C Bratt EL Moons P.
Person-centred transition programme to empower adolescents with congenital heart disease in the transition to adulthood: a study protocol for a hybrid randomised controlled trial (STEPSTONES project)
.
BMJ Open up
2017
;
7
:
e014593
.
37
Saarijarvi
M
, Wallin L Moons P Gyllensten H Bratt EL.
Transition programme for adolescents with congenital heart disease in transition to machismo: protocol for a mixed-method process evaluation study (the STEPSTONES project)
.
BMJ Open
2019
;
nine
:
e028229
.
38
Acuna
Mora
M
, Saarijarvi M Sparud-Lundin C Moons P Bratt EL.
Empowering young persons with congenital heart disease: using intervention mapping to develop a transition program—the STEPSTONES projection
.
J Pediatr Nurs
2020
;
50
:
e8
–
e17
.
39
Goossens
E
, Van Deyk Thousand Zupancic North Budts Due west Moons P.
Effectiveness of structured patient education on the knowledge level of adolescents and adults with congenital heart disease
.
Eur J Cardiovasc Nurs
2014
;
thirteen
:
63
–
seventy
.
twoscore
Goossens
E
, Fieuws S Van Deyk Thousand Luyckx K Gewillig M Budts W Moons P.
Effectiveness of structured education on knowledge and health behaviors in patients with congenital heart disease
.
J Pediatr
2015
;
166
:
1370
–
1376.e1
.
41
Lee
MJ
, Jung D.
Development and effects of a self-management efficacy promotion program for adult patients with congenital centre disease
.
Eur J Cardiovasc Nurs
2019
;
18
:
140
–
148
.
42
Ladouceur
M
, Calderon J Traore M Cheurfi R Pagnon C Khraiche D Bajolle F Bonnet D.
Educational needs of adolescents with congenital center disease: impact of a transition intervention program
.
Arch Cardiovasc Dis
2017
;
110
:
317
–
324
.
43
Hergenroeder
Ac
, Moodie DS Penny DJ Wiemann CM Sanchez-Fournier B Moore LK Head J.
Functional classification of heart failure before and subsequently implementing a healthcare transition program for youth and young adults transferring from a pediatric to an adult built centre disease clinics
.
Congenit Heart Dis
2018
;
13
:
548
–
553
.
44
Gaydos
SS
, Chowdhury SM Judd RN McHugh KE.
A transition clinic intervention to better follow-up rates in adolescents and young adults with congenital heart affliction
.
Cardiol Young
2020
;
30
:
633
–
640
.
45
Bravo
P
, Edwards A Barr PJ Scholl I Elwyn G McAllister M
Conceptualising patient empowerment: a mixed methods study
.
BMC Health Serv Res
2015
;
fifteen
:
252
.
46
Small
Due north
, Bower P Chew-Graham CA Whalley D Protheroe J.
Patient empowerment in long-term atmospheric condition: development and preliminary testing of a new measure
.
BMC Health Serv Res
2013
;
thirteen
:
263
.
47
Castro
EM
, Van Regenmortel T Vanhaecht Grand Sermeus W Van Hecke A.
Patient empowerment, patient participation and patient-centeredness in hospital care: a concept analysis based on a literature review
.
Patient Educ Couns
2016
;
99
:
1923
–
1939
.
48
Pulvirenti
M
, McMillan J Lawn South.
Empowerment, patient centred care and self-direction
.
Health Await
2014
;
17
:
303
–
310
.
49
Acuna Mora
Yard
, Sparud-Lundin C Burstrom A Hanseus K Rydberg A Moons P Bratt EL.
Patient empowerment and its correlates in young persons with built heart disease
.
Eur J Cardiovasc Nurs
2019
;
xviii
:
389
–
398
.
50
Harper
BD
, Nganga W Armstrong R Forsyth KD Ham HP Keenan WJ Russ CM.
Where are the paediatricians? An international survey to understand the global paediatric workforce
.
BMJ Paediatr Open up
2019
;
3
:e000397.
51
White
PH
, Cooley WC
Supporting the health intendance transition from adolescence to adulthood in the medical home
.
Pediatrics
2018
;
142
:
e20182587
.
52
Goldenring
JM
, Rosen DS.
Getting into adolescent heads: an essential update
.
Contemp Pediatr
2004
;
21
:
64
–
90
.
53
Zhang
LF
, Ho JS Kennedy SE.
A systematic review of the psychometric properties of transition readiness assessment tools in adolescents with chronic disease
.
BMC Pediatr
2014
;
14
:
4
.
54
Hanghøj
South
, Boisen KA Schmiegelow K Hølge-Hazelton B.
Youth friendly communication in a transition clinic aimed at adolescents with chronic illness
.
Int J Adolesc Med Wellness
2017
;
32
:
20170083
.
55
Moons
P
, De Geest South Budts W.
Comprehensive intendance for adults with congenital heart disease: expanding roles for nurses
.
Eur J Cardiovasc Nurs
2002
;
1
:
23
–
28
.
56
Janssens
A
, Goossens E Luyckx Chiliad Budts W Gewillig Yard Moons P
Exploring the relationship between disease-related cognition and health risk behaviours in immature people with congenital heart disease
.
Eur J Cardiovasc Nurs
2016
;
15
:
231
–
240
.
57
Van Deyk
K
, Moons P Gewillig M Budts W.
Educational and behavioral issues in transitioning from pediatric cardiology to adult-centered health care
.
Nurs Clin North Am
2004
;
39
:
755
–
768
.
58
Schwerzmann
M
, Goossens E Gallego P Kovacs AH Moons P Swan L Tobler D de Stoutz North Gabriel H Greutmann M Roos-Hesselink JW Sobanski PZ Thomet C.
Recommendations for advance care planning in adults with congenital center affliction: a position paper from the ESC Working Grouping of Developed Congenital Centre Disease, the Association of Cardiovascular Nursing and Allied Professions (ACNAP), the European Association for Palliative Care (EAPC), and the International Society for Adult Congenital Heart Disease (ISACHD)
.
Eur Heart J
2020
;
41
:
4200
–
4210
.
59
Lesch
W
, Specht K Lux A Frey One thousand Utens Due east Bauer U.
Affliction-specific knowledge and information preferences of young patients with congenital heart affliction
.
Cardiol Immature
2014
;
24
:
321
–
330
.
60
Applebaum
MA
, Lawson EF von Scheven E.
Perception of transition readiness and preferences for use of technology in transition programs: teens' ideas for the future
.
Int J Adolesc Med Health
2013
;
25
:
119
–
125
.
61
Wolfstadt
J
, Kaufman A Levitin J Kaufman M.
The use and usefulness of My Health passport: an online tool for the cosmos of a portable health summary
.
Int J Child Adolesc Health
2011
;
3
:
499
–
506
.
62
Kieckhefer
GM
, Trahms CM.
Supporting development of children with chronic conditions: from compliance toward shared management
.
Pediatr Nurs
2000
;
26
:
354
–
363
.
63
Betz
CL
, Coyne IT.
Transition from Pediatric to Adult Healthcare Services for Adolescents and Immature Adults with Long-Term Atmospheric condition
.
Cham
:
Springer
;
2020
. p
336
.
64
Gupta
P.
Caring for a teen with congenital middle affliction
.
Pediatr Clin North Am
2014
;
61
:
207
–
228
.
65
Williams
RG.
Transitioning youth with congenital heart affliction from pediatric to adult health care
.
J Pediatr
2015
;
166
:
15
–
19
.
66
Burstrom
A
, Bratt EL Frenckner B Nisell K Hanseus G Rydberg A Ojmyr-Joelsson M.
Adolescents with congenital heart disease: their opinions about the preparation for transfer to adult care
.
Eur J Pediatr
2017
;
176
:
881
–
889
.
67
Hilderson
D
, Eyckmans L Van der Elst Chiliad Westhovens R Wouters C Moons P.
Transfer from paediatric rheumatology to the adult rheumatology setting: experiences and expectations of young adults with juvenile idiopathic arthritis
.
Clin Rheumatol
2013
;
32
:
575
–
583
.
68
Bomba
F
, Herrmann-Garitz C Schmidt J Schmidt S Thyen U.
An assessment of the experiences and needs of adolescents with chronic weather in transitional intendance: a qualitative study to develop a patient instruction programme
.
Health Soc Care Community
2017
;
25
:
652
–
666
.
69
Elsbernd
A
, Boisen KA Hjerming Chiliad Niemann CU Petersen Grand Pappot H Hjalgrim LL.
Developing age-appropriate supportive facilities, resources, and activities for adolescents and young adults with cancer beyond departments and diagnoses: a single-heart feel
.
J Adolesc Young Adult Oncol
2019
;
8
:
98
–
102
.
70
Callus
Eastward
, Pravettoni Chiliad.
The role of clinical psychology and peer to peer support in the management of chronic medical conditions—a practical example with adults with congenital heart disease
.
Front Psychol
2018
;
nine
:
731
.
71
Hilderson
D
, Moons P Van der Elst K Luyckx 1000 Wouters C Westhovens R.
The clinical touch of a cursory transition programme for young people with juvenile idiopathic arthritis: results of the DON'T RETARD project
.
Rheumatology (Oxford)
2016
;
55
:
133
–
142
.
72
Desai
PP
, Sutton LJ Staley MD Hannon DW.
A qualitative study exploring the psychosocial value of weekend camping experiences for children and adolescents with complex heart defects
.
Child Care Wellness Dev
2014
;
twoscore
:
553
–
561
.
73
Moons
P
, Pinxten S Dedroog D Van Deyk K Gewillig G Hilderson D Budts Due west.
Expectations and experiences of adolescents with congenital heart disease on being transferred from pediatric cardiology to an adult congenital heart disease program
.
J Adolesc Health
2009
;
44
:
316
–
322
.
74
Wray
J
, Maynard 50.
Specialist cardiac services: what do young people want?
Cardiol Young
2008
;
18
:
569
–
574
.
75
Edwin
F
, Zuhlke Fifty Farouk H Mocumbi AO Entsua-Mensah Thousand Delsol-Gyan D Bode-Thomas F Brooks A Cupido B Tettey Yard Aniteye Due east Tamatey MM Gyan KB Tchoumi JCT Elgamal MA.
Status and challenges of care in Africa for adults with congenital heart defects
.
World J Pediatr Congenit Center Surg
2017
;
8
:
495
–
501
.
76
Yassaee
A
, Unhurt D Armitage A Viner R.
The impact of historic period of transfer on outcomes in the transition from pediatric to developed health systems: a systematic review of reviews
.
J Adolesc Wellness
2019
;
64
:
709
–
720
.
77
Heery
East
, Sheehan AM While AE Coyne I.
Experiences and outcomes of transition from pediatric to adult health care services for young people with congenital middle illness: a systematic review
.
Congenit Center Dis
2015
;
10
:
413
–
427
.
78
Mackie
AS
, Fournier A Swan 50 Marelli AJ Kovacs AH.
Transition and transfer from pediatric to adult congenital center disease intendance in canada: call for strategic implementation
.
Can J Cardiol
2019
;
35
:
1640
–
1651
.
79
Gurol-Urganci
I
, de Jongh T Vodopivec-Jamsek Five Atun R Automobile J.
Mobile phone messaging reminders for attendance at healthcare appointments
.
Cochrane Database Syst Rev
2013
;
2013
:
CD007458
.
fourscore
Bratt
EL
, Burstrom A Hanseus K Rydberg A Berghammer Grand
Do non forget the parents—parents' concerns during transition to adult care for adolescents with congenital centre disease
.
Child Care Health Dev
2018
;
44
:
278
–
284
.
81
Le Roux
E
, Mellerio H Jacquin P Bourmaud A Guilmin-Crepon Due south Faye A Matheron S Boulkedid R Alberti C.
Practical generic guidelines for paediatric-to-adult transition for adolescents with chronic illness
.
Eur J Public Health
2019
;
29
:
442
–
448
.
82
Baumgartner
H
, De Backer J Babu-Narayan SV Budts W Chessa M Diller GP Lung B Kluin J Lang IM Meijboom F Moons P Mulder BJM Oechslin E Roos-Hesselink JW Schwerzmann M Sondergaard L Zeppenfeld K
2020 ESC Guidelines for the management of developed congenital heart disease
.
Eur Heart J
2021
;
42
:
563
–
645
.
83
Moons
P
, Scholte Op Reimer Due west De Geest South Fridlund B Heikkila J Jaarsma T Martensson J Smith One thousand Stewart S Stromberg A Thompson DR
Nurse specialists in adult congenital middle disease: the current status in Europe
.
Eur J Cardiovasc Nurs
2006
;
five
:
sixty
–
67
.
84
Hatchett
R
, McLaren Due south Corrigan P Filer L.
An evaluation of a specialist nursing service for adult patients with congenital heart disease
.
Int J Nurs Pract
2015
;
21
:
556
–
565
.
85
Moons
P
, Hilderson D Van Deyk M.
Implementation of transition programs can foreclose another lost generation of patients with congenital heart disease
.
Eur J Cardiovasc Nurs
2008
;
7
:
259
–
263
.
86
Sillman
C
, Morin J Thomet C Barber D Mizuno Y Yang HL Malpas T Flocco SF Finlay C Chen CW Balon Y Fernandes SM.
Adult congenital heart disease nurse coordination: essential skills and role in optimizing team-based care a position argument from the International Society for Adult Congenital Center Disease (ISACHD)
.
Int J Cardiol
2017
;
229
:
125
–
131
.
87
Talluto
C.
Establishing a successful transition care programme for the adolescent with congenital heart disease
.
Curr Opin Cardiol
2018
;
33
:
73
–
77
.
88
Cooley
WC
, Sagerman PJ
Supporting the wellness care transition from adolescence to adulthood in the medical home
.
Pediatrics
2011
;
128
:
182
–
200
.
89
Donabedian
A.
Criteria and standards for quality cess and monitoring
.
QRB Qual Rev Balderdash
1986
;
12
:
99
–
108
.
© The Author(s) 2021. Published by Oxford Academy Press on behalf of the European Guild of Cardiology.
This is an Open up Access article distributed nether the terms of the Creative Eatables Attribution Non-Commercial License (https://creativecommons.org/licenses/by-nc/iv.0/), which permits non-commercial re-use, distribution, and reproduction in whatever medium, provided the original piece of work is properly cited. For commercial re-apply, please contact journals.permissions@oup.com
Source: https://academic.oup.com/eurheartj/article/42/41/4213/6312873
0 Response to "Transition to Adult Congenital Heart Disease Care a Review"
Post a Comment