Table 1 Overview of terms and definitions
Gleeson et al., 2013 [19] | Lost to follow up | stopped attending either paediatric or adult clinics or were discharged because of nonattendance before care could be transferred to another adult service |
de Bono et al., 2005 [30] | Lost to follow up | not being seen in any cardiac clinic for a period of at least 2 years |
Wacker et al., 2005 [53] | Lost to follow-up | failed to return for a scheduled FU visit for > 5 years |
Wray et al., 2013 [54] | Lost to specialist follow up | not been seen within any specialist network in the past 3 years |
Gerardin et al., 2016 [32] | Lost to cardiology follow-up | Not seen a cardiologist in an outpatient clinic during the 3 year study period |
Bohun et al., 2016 [2] | Lost to follow up | Not seen by any provider in the institution |
Agwu et al., 2015 [27] | Lost to follow-up | No primary HIV outpatient provider visits during the 1 year (365 days) after the 22nd birthday. |
Trefz et al., 2015 [48] | lost to follow-up | ≥3 times no show for outpatient evaluation and/or no blood samples sent for Phe analysis” (Phe = phenylalanine) |
Kakkar et al., 2016 [36] | Lost to follow-up | could not be reached |
Sawicki et al., 2017 [44] | lost to follow-up | patient without any data in the Registry |
Mackie et al., 2009 [6] | Loss of follow-up | Patients who were not seen by a cardiologist within the indicated age range but were seen again by a cardiologist in an older age group or patients who had their last cardiology follow-up at that age. |
Mackie et al., 2012 [40] | Loss to follow-up | no return visit to a cardiology clinic for a minimum of 3 years |
Pyatak et al., 2017 [41] | Loss to follow-up | The number of routine diabetes care visits (including both paediatric and adult care visits) at the study’s participating clinics during the 12-month study period. |
Sam-Agudu et al., 2017 [42] | Retention in care | Having made at least two clinic visits separated by a 6-month period within 12 months and at least four visits each separated by at least 6 months within 24 months post transfer |
Steinbeck et al., 2015 [45] | Retention in adult services | The definition of retention in the adult service was: (i) the participant continued to be a patient of the adult diabetologist they were originally referred to; or failing that (ii) the participant successfully transferred to another adult diabetologist |
Norris et al., 2013 [7] | Retention in care | any cardiology clinic visit within 2 years of the telephone interview |
Gurvitz et al., 2013 [5] | Gap in cardiology care | more than 3 year interval between any cardiology appointments (internal medicine, paediatric or adult congenital cardiology) |
Sawicki et al., 2017 [44] | Gap in care | time in days between last recorded encounter at a paediatric or affiliate program and first recorded encounter at an adult program |
Sawicki et al., 2017 [44] | Prolonged gap in care | A gap in care in accredited CF centres of greater than or equal to 365 days |
Garvey et al., 2012 [31] | (time) Gap | describing post transition gaps in care > 6 months for patients with type 1 diabetes |
Mackie et al., 2016 [39] | Excess time between paediatric and ACHD care | The time interval (in months) between the final paediatric visit and the first ACHD visit, minus the recommended time interval between these visits |
Wisk et al., 2015 [51] | Transfer gap | time from the last paediatric-focused PCP visit to the first adult-focused PCP visit |
Norris et al., 2013 [7] | Lapse in care | Any 2y interval without cardiac care |
Valente et al., 2013 [49] | Lapse of care | no direct recorded contact with our adult congenital heart disease (ACHD) centre within the last 3 years |
Yeung et al., 2008 [9] | Lapse in medical care | Length of time from leaving care at a paediatric institution to receiving subsequent cardiac care at any institution. A duration since last visit greater than the 2-year |
Sattoe et al., 2017 [43] | Successful transition | Indicator 1 – patient not lost to follow-up: It is recorded whether a patient is transferred and to where, and/or a note or letter of transfer of the patient to adult care is found in the electronic patient record (EPR) (yes/no). Those who score ‘no’ are no longer seen in paediatric care, but it is not clear whether and where they receive adult care treatment. • Indicator 2 – attending scheduled visits in adult care: The patient has not missed any consultations in the 3 years after transfer (yes/no), as reported in the EPR. • Indicator 3 – patient building a trusting relationship with adult provider: The patient trusts the current adult care provider as indicated by a score > 15 on a scale of 5–20 (yes/ no) in the survey. A five-item 4-point Likert scale (from 1 = “never” to 4 = “always”; α = 0.90) was used. This was measured in the questionnaire with a validated Dutch adaptation of one scale from the American Consumer Assessment of Health Plan Surveys questionnaire (Delnoij et al. 2006) |
Andemariam et al., 2014 [28] | Successful transition | attendance of at least one outpatient visit at the adult SCD centre after being discharged from the paediatric SCD program |
Bohun et al., 2016 [2] | Successful transfer | attending at least one adult congenital heart disease clinic visit |
Vaikunth et al., 2018 [17] | Successful transfer | Transfer of care was defined as successful if patients seen in the transition clinic were subsequently seen on at least one occasion in the ACHD clinic at the adult hospital |
Harbison et al., 2016 [14] | Successful transfer | The subsequent attendance at adult cardiology within 2 years of PC visit |
Hazel et al., 2010 [20] | Unsuccessful transfer | failure to make initial contact with an adult rheumatologist, or failure to continue to follow-up with an adult rheumatologist 2 years after transfer (no contact for a 1 year period after the last scheduled appointment) |
Wisk et al., 2015 [51] | Transfer timing | time to first visit with an adult focused PCP |
Reid et al., 2004 [8] | Successful transfer | Attended at least 1 appointment of any type (e.g., clinic, echocardiogram, cardiac catheterization, or surgical) at a CACH centre. (CACH = Canadian Adult Congenital Heart) |
Goossens et al., 2011 [4] | No follow-up | currently not in cardiac follow-up or if they could not be contacted by mail or phone |
Wojciechowski et al., 2002 [52] | Uninterrupted care | whether or not the participant kept his or her initial ACC appointment and the length of time between the last PCC appointment and the first ACC appointment |
Goossens et al., 2015 [3] | Not being in cardiac follow-up | A complete cessation of cardiac care was confirmed |
Arthur et al., 2018 [29] | Continuity of primary care | Concentration of visits with a single provider or team in primary care |
Hattori et al., 2016 [34] | Ended or interrupted follow-up | No transfer from paediatric care or ended or interrupted follow-up by paediatric renal services, but later presented to adult renal services without medical, social, and/or educational information prepared by paediatric renal services |
Kakkar et al., 2016 [36] | Engaged in care | at least one physician visit within 6 months of the interview |
Kayle et al., 2018 [37] | Continuity of care | the frequency of clinic appointments and mean duration in care in years |
Stringer et al., 2015 [46] | Patient compliance with follow-up | Ongoing care with adult rheumatologic follow-up after transfer of care |
Suris et al., 2015 [47] | Attending scheduled visits in adult care | Attending scheduled visits in adult care: no missed consultations unless previously cancelled and rescheduled. |
Hankins et al., 2012 [33] | Fulfilment of first appointments | went for their first appointment with the adult SCD provider within 3 months of leaving paediatric care |
Holmes-Walker et al., 2007 [35] | Attendance at specialist clinic | The aim was to ensure a minimum of two visits per year to the service |
Kipps et al 2002 [38] | Regular clinic attendance | Regular clinic attendance rates (at least 6 monthly) from 2 years pretransfer to 2 years post-transfer |
Steinbeck et al., 2015 [45] | Engagement in adult services | (i) at least one visit to an adult diabetes service post-discharge from paediatric care; (ii) frequency of visits to the adult service; and (iii) the time interval between the last paediatric diabetes service visit and first adult diabetes service visit |
Van Walleghem et al., 2008 [50] | Drop out | first year fall-out rate after transfer from paediatric to adult care |