Living on a knife edge-the daily struggle of coping with symptomatic cardiac arrhythmias

Patients were required to be aged 18+, able to communicate in English or Welsh and
previously diagnosed with a symptomatic cardiac arrhythmia, awaiting and/or previously
treated with catheter ablation. Purposive sampling was used to include a relevant
cross-section of patients (i.e. comprehensive age range, different arrhythmia diagnoses
and both sexes).

Patients under the care of clinicians at University Hospital Wales, Cardiff and Queen
Elizabeth Hospital, Birmingham were eligible. Consecutive patients who met predefined
sampling criteria were invited to participate, and initially approached by their electrophysiology
physician who discussed the study and provided written patient information. Individuals
interested in participating were subsequently contacted and where appropriate, a mutually
convenient appointment for a face-to-face interview made. Twenty-one patients chose
to be interviewed in their homes; four opted to be interviewed at a hospital site
in a private room. All patients provided written informed consent.

All interviews were conducted by one researcher trained in cognitive interview techniques
(KLW). Sessions were tape-recorded with patients’ permission (one patient declined,
two were not recorded due to technical issues), with recordings supported by field
notes. Interviews used a semi-structured guide based on the draft questionnaire developed
by Withers et al. 21] and modified utilising feedback from the 2010 multi-centre audit. Using “think-aloud”
techniques participants were instructed to read the questionnaire out loud, and verbalise
their thoughts, with the interviewer asking probing questions throughout the process.
This enabled identification of potential problems and allowed the researcher to understand
how questions were interpreted. Patients were asked to discuss topics lacking clarity
within the questionnaire and suggest improvements, they were also asked if there were
issues missing from the questionnaire they expected to see, or topics requiring further
investigation. At the end of the interview, patients were encouraged to discuss how
their arrhythmia affected them, and highlight difficulties in living with a cardiac
arrhythmia. Recorded interviews were transcribed verbatim and checked for accuracy.

Interviews followed a grounded theory process of iterative changes, with recurring
issues used to inform and guide subsequent interviews. Interviews were carried out
until data saturation was reached with no new issues or concerns being identified.
Qualitative content analysis with a systematic classification process 24] was used to analyse and code interview data. These were examined to identify recurring
themes, with modifications retested in a second phase of interviews. Key quotations
were selected to reflect key issues. To ensure rigor, a second researcher experienced
in qualitative research was involved in these processes.

Interview parameters

An initial cohort of 19 patients was interviewed from two ablation centres (n?=?13
Birmingham, n?=?6 Cardiff), at which point data saturation was reached and revision
of the questionnaires undertaken. Following revisions, the questionnaire was re-tested
with additional subjects (n?=?5 Cardiff, n?=?1 Birmingham). Interviews took place
between October 2012 and January 2013.

Patient characteristics

Fifteen (60 %) of the 25 participants were female, and the age range was 43 to 87 years
(mean 61 years). The mean average length of time since diagnosis, where known, was
3.24 years (range 11 months-19 years). Fourteen patients (56 %) had received at least
one ablation procedure prior to interview, and four of these (16 %) were pending a
subsequent procedure. The remaining eleven (44 %) were awaiting their first ablation.
Primary arrhythmia diagnoses are detailed in Table 1.

Table 1. Primary diagnoses of arrhythmia substrate

Eleven participants were retired, and 11 employed; of these, two were on sick leave
and three had reduced their working hours due to their arrhythmia. Two participants
were not in employment and one was a full time carer.

Recorded sessions lasted between 23 and 93 minutes (mean 50 minutes), with full sessions
including study introduction and QA lasting between 50 minutes and 4 hours 15 minutes.