Loss to Specialist Follow-up in Congenital Heart Disease
We created a complete consecutive list of patients who had repair of uncomplicated tetralogy of Fallot at Great Ormond Street Hospital (GOSH) from the very first repair performed in February 1964 to January 2009; patients receiving an extracardiac conduit at their primary repair were excluded as this commits them to subsequent surgery. Patients from abroad were excluded as we have no control of their follow-up. The list was generated using several sources: the manually written surgical lists (patients operated in the 1960s and 1970s), scanned operation notes (patients from the 1970s and 1980s), and from various electronic databases used since then. Archived medical records were checked and early postoperative deaths and the dates of any childhood PVRs were determined. Current patients have National Health Service (NHS) numbers recorded within their childhood records, but this is not true for patients lost before these came into existence in 1996. Using the known dates of birth and childhood surnames, NHS numbers were linked to the patient records using batch tracing functions and manual searches. At around the age of 16, patients are currently discharged to the care of their nearest ACHD service; this process is systematic at present but historically it was much more variable. Given a list of NHS numbers and current names, addresses and dates of birth, collaborating specialist cardiologists from the Adult Congenital heart disease Research Network scanned their local databases for the listed patients to ascertain whether they had died under their care or were under active review or had been previously seen but then 'lost'; if they had undergone PVR they established the date of PVR when this had first occurred beyond childhood. Where the specialist centres, patients' families or the NHS core record alerted us to a late death, the date of death was documented. Patients were deemed 'lost to specialist follow-up' if they had not been seen within any specialist network in the past 3 years. Patients known to have relocated abroad or whose NHS numbers we could not establish were censored on the date last seen alive. Because PVR is only undertaken in specialist centres, live patients who had corresponding NHS numbers but were lost to specialist follow-up were assumed not to have had PVR.
The General Practitioners (GPs) of patients who had repaired tetralogy of Fallot at GOSH and were believed not to be under specialist follow-up were contacted to confirm that we had identified the correct patient. On receiving confirmation, patients were sent an explanatory letter asking them to contact us if they were prepared to receive a telephone call.
Patients were contacted by telephone at a time convenient to them. The telephone interview was semistructured and extensive notes (mostly verbatim quotes) were taken contemporaneously by the researcher (JW). Questions were asked concerning participants' current state of health and any interactions with health professionals, their recollection of any advice they had been given regarding their heart condition, use of support groups, knowledge about their condition, health experiences since the time of their surgery, attitudes to and experiences of follow-up and knowledge about current recommendations regarding follow-up of adult patients with congenital heart disease. Though it was made clear that the study did not aim to influence their follow-up arrangements, if participants subsequently wanted follow-up with specialist ACHD providers we contacted their GPs to request this.
Life table methodology, was employed to determine the cumulative incidence of PVR in surviving patients. To illustrate the impact of loss to follow-up on rates of PVR over time, two curves were generated. The first included all patients known from the NHS record to be alive, regardless of follow-up status and provides the 'actual' proportions over time. The second included patients only while they were actually under specialist care, the 'lost' patients being censored on the date last seen by a specialist centre, usually GOSH. SPSS V.18 was used.
The first stage of the analysis of the telephone conversations involved familiarisation with the data by reading and re-reading the notes and quotes. Thematic analysis was used to generate initial codes from each interview and to identify themes across the dataset. Content analysis was used to determine the current arrangements for follow-up, access to support and requests for further information and/or referral to specialist ACHD services.
The project was approved by Research Ethics Committees within the National Research Ethics Service (NRES).
Methods
We created a complete consecutive list of patients who had repair of uncomplicated tetralogy of Fallot at Great Ormond Street Hospital (GOSH) from the very first repair performed in February 1964 to January 2009; patients receiving an extracardiac conduit at their primary repair were excluded as this commits them to subsequent surgery. Patients from abroad were excluded as we have no control of their follow-up. The list was generated using several sources: the manually written surgical lists (patients operated in the 1960s and 1970s), scanned operation notes (patients from the 1970s and 1980s), and from various electronic databases used since then. Archived medical records were checked and early postoperative deaths and the dates of any childhood PVRs were determined. Current patients have National Health Service (NHS) numbers recorded within their childhood records, but this is not true for patients lost before these came into existence in 1996. Using the known dates of birth and childhood surnames, NHS numbers were linked to the patient records using batch tracing functions and manual searches. At around the age of 16, patients are currently discharged to the care of their nearest ACHD service; this process is systematic at present but historically it was much more variable. Given a list of NHS numbers and current names, addresses and dates of birth, collaborating specialist cardiologists from the Adult Congenital heart disease Research Network scanned their local databases for the listed patients to ascertain whether they had died under their care or were under active review or had been previously seen but then 'lost'; if they had undergone PVR they established the date of PVR when this had first occurred beyond childhood. Where the specialist centres, patients' families or the NHS core record alerted us to a late death, the date of death was documented. Patients were deemed 'lost to specialist follow-up' if they had not been seen within any specialist network in the past 3 years. Patients known to have relocated abroad or whose NHS numbers we could not establish were censored on the date last seen alive. Because PVR is only undertaken in specialist centres, live patients who had corresponding NHS numbers but were lost to specialist follow-up were assumed not to have had PVR.
Telephone Interviews
The General Practitioners (GPs) of patients who had repaired tetralogy of Fallot at GOSH and were believed not to be under specialist follow-up were contacted to confirm that we had identified the correct patient. On receiving confirmation, patients were sent an explanatory letter asking them to contact us if they were prepared to receive a telephone call.
Patients were contacted by telephone at a time convenient to them. The telephone interview was semistructured and extensive notes (mostly verbatim quotes) were taken contemporaneously by the researcher (JW). Questions were asked concerning participants' current state of health and any interactions with health professionals, their recollection of any advice they had been given regarding their heart condition, use of support groups, knowledge about their condition, health experiences since the time of their surgery, attitudes to and experiences of follow-up and knowledge about current recommendations regarding follow-up of adult patients with congenital heart disease. Though it was made clear that the study did not aim to influence their follow-up arrangements, if participants subsequently wanted follow-up with specialist ACHD providers we contacted their GPs to request this.
Statistical Analysis
Life table methodology, was employed to determine the cumulative incidence of PVR in surviving patients. To illustrate the impact of loss to follow-up on rates of PVR over time, two curves were generated. The first included all patients known from the NHS record to be alive, regardless of follow-up status and provides the 'actual' proportions over time. The second included patients only while they were actually under specialist care, the 'lost' patients being censored on the date last seen by a specialist centre, usually GOSH. SPSS V.18 was used.
Qualitative Analysis
The first stage of the analysis of the telephone conversations involved familiarisation with the data by reading and re-reading the notes and quotes. Thematic analysis was used to generate initial codes from each interview and to identify themes across the dataset. Content analysis was used to determine the current arrangements for follow-up, access to support and requests for further information and/or referral to specialist ACHD services.
The project was approved by Research Ethics Committees within the National Research Ethics Service (NRES).
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