Loss to Specialist Follow-up in Congenital Heart Disease
From February 1964 to January 2009, 1085 UK patients (58% males) had repair of Fallot at GOSH, at a mean age of 3·5±3·6 years. Of 1085, we have either known dates of death or NHS numbers and hence mortality status in all but 27. Most of the 27 who have not been matched to their NHS numbers are adult women and a further 17 patients are known to have relocated abroad. 148 are known to have died to date. 100 died within 1 year of repair (24 of 106 patients (23%) operated on in the 1960s, and 6 of 246 (2%) operated in the 2000s). Of the subsequent deaths, 23/48 (48%) appear not to have occurred while the patient was under specialist care, so any attribution of causes of late death for this cohort is unreliable.
Of the 893 known to be alive and living in the UK, 216 (24%) appear not to have been seen in specialist centres including our own for more than 3 years (figure 1). The total of 216 includes 22 young people who have been lost from our own clinics for more than 3 years, while 194 are not attending ACHD clinics. The median current age of 'lost' patients is 32 years and median duration of loss to follow-up is 22 years.
(Enlarge Image)
Figure 1.
Flow diagram showing outcomes and background of patients contacted by telephone.
A first PVR has been performed to date in 188 patients at a mean age of 20±13 years, all necessarily in patients under specialist care. Figure 2 shows the cumulative proportion of live patients who have had PVR. Under the untested assumption that patients lost to follow-up lie in the same spectrum of primary anatomy and of incompleteness of surgical repair as those under active follow-up, the difference between these curves suggests that an additional 63 PVRs would have occurred, had the patients been followed by specialists.
(Enlarge Image)
Figure 2.
Cumulative proportion by age of patients having pulmonary valve replacement (PVR). The two curves represent the results obtained if (A) patients are only included while under active follow-up and (B) if all patients contribute in their lifetime whether or not they are under specialist follow-up. 'Lost' patients will not have had a PVR. Patients are censored if they died or moved abroad. In curve A, 'lost' patients are censored on the date last seen alive by a specialist hospital.
Letters were sent to 176 GPs and as a consequence letters inviting a telephone call were sent to 100 patients; in six cases we were asked not to contact patients. One patient had been incorrectly tracked. Forty-two patients/carers of patients agreed to be contacted but five were not available. The 37 patients contacted by telephone included 23 (59%) males with a median age current age of 44 years (range 9–57 years) and a median time since surgery of 37 years (range 8–47 years).
Participants varied in terms of their current follow-up arrangements and in their requirements for changes to these arrangements (Table 1). The majority of patients commented that 'they knew what they wanted to' about their condition, although few had had any contact with support groups or accessed information about their condition. A number of participants had not known how to access further support or information, as the following quote illustrates: 'I looked at the internet when I got your letter—I could spell tetralogy of Fallot then and look it up'.
Two main themes concerning attendance for follow-up emerged from the interviews: perceived responsibility and reassurance. Patients saw responsibility for maintaining follow-up as primarily the duty of health professionals ( Box 1 ) or participants saw it as their responsibility ( Box 2 ); within each of these there were a number of subthemes. Reassurance was described by many participants—those receiving and not receiving follow-up—as the main benefit of follow-up ( Box 3 ).
Results
From February 1964 to January 2009, 1085 UK patients (58% males) had repair of Fallot at GOSH, at a mean age of 3·5±3·6 years. Of 1085, we have either known dates of death or NHS numbers and hence mortality status in all but 27. Most of the 27 who have not been matched to their NHS numbers are adult women and a further 17 patients are known to have relocated abroad. 148 are known to have died to date. 100 died within 1 year of repair (24 of 106 patients (23%) operated on in the 1960s, and 6 of 246 (2%) operated in the 2000s). Of the subsequent deaths, 23/48 (48%) appear not to have occurred while the patient was under specialist care, so any attribution of causes of late death for this cohort is unreliable.
Of the 893 known to be alive and living in the UK, 216 (24%) appear not to have been seen in specialist centres including our own for more than 3 years (figure 1). The total of 216 includes 22 young people who have been lost from our own clinics for more than 3 years, while 194 are not attending ACHD clinics. The median current age of 'lost' patients is 32 years and median duration of loss to follow-up is 22 years.
(Enlarge Image)
Figure 1.
Flow diagram showing outcomes and background of patients contacted by telephone.
A first PVR has been performed to date in 188 patients at a mean age of 20±13 years, all necessarily in patients under specialist care. Figure 2 shows the cumulative proportion of live patients who have had PVR. Under the untested assumption that patients lost to follow-up lie in the same spectrum of primary anatomy and of incompleteness of surgical repair as those under active follow-up, the difference between these curves suggests that an additional 63 PVRs would have occurred, had the patients been followed by specialists.
(Enlarge Image)
Figure 2.
Cumulative proportion by age of patients having pulmonary valve replacement (PVR). The two curves represent the results obtained if (A) patients are only included while under active follow-up and (B) if all patients contribute in their lifetime whether or not they are under specialist follow-up. 'Lost' patients will not have had a PVR. Patients are censored if they died or moved abroad. In curve A, 'lost' patients are censored on the date last seen alive by a specialist hospital.
Telephone Interviews
Letters were sent to 176 GPs and as a consequence letters inviting a telephone call were sent to 100 patients; in six cases we were asked not to contact patients. One patient had been incorrectly tracked. Forty-two patients/carers of patients agreed to be contacted but five were not available. The 37 patients contacted by telephone included 23 (59%) males with a median age current age of 44 years (range 9–57 years) and a median time since surgery of 37 years (range 8–47 years).
Participants varied in terms of their current follow-up arrangements and in their requirements for changes to these arrangements (Table 1). The majority of patients commented that 'they knew what they wanted to' about their condition, although few had had any contact with support groups or accessed information about their condition. A number of participants had not known how to access further support or information, as the following quote illustrates: 'I looked at the internet when I got your letter—I could spell tetralogy of Fallot then and look it up'.
Themes From the Qualitative Analysis
Two main themes concerning attendance for follow-up emerged from the interviews: perceived responsibility and reassurance. Patients saw responsibility for maintaining follow-up as primarily the duty of health professionals ( Box 1 ) or participants saw it as their responsibility ( Box 2 ); within each of these there were a number of subthemes. Reassurance was described by many participants—those receiving and not receiving follow-up—as the main benefit of follow-up ( Box 3 ).
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