Patient perspectives of nuisance bleeding and adherence to dual antiplatelet therapy: a qualitative study

Patient and public involvement

A patient advisory group (consisting of PCI, CABG and conservatively managed patients with ACS, which formed the three study cohorts of the ADAPTT study) provided input throughout this qualitative study. The group attended regular meetings to discuss results from the study and provide feedback to findings.6

Setting

This study was undertaken in the West of England, UK. Patients approached for recruitment had received care from one cardiology department in the West of England. Patient data collection took place on University of Bristol premises.

Study design and sample

Four focus groups were assembled, including patients (a mixture of post-CABG surgery, post-PCI and medically treated ACS) at the early stages of DAPT treatment (0–3 months into treatment), and those at the end of DAPT treatment (taken DAPT for 9–12 months). Focus groups were used to identify the range of views and experiences of patients17 with regard to: attribution of symptoms to DAPT; range of thresholds for seeking further information and help; range of thresholds for requesting a change in medication; and issues related to adherence and quality of life.

Patient recruitment

A detailed description of the patient recruitment process is reported elsewhere.16 Patients were approached by research nurses and consultant cardiologists during follow-up and postsurgery clinics, cardiac rehabilitation sessions and day clinics. Those who expressed interest received an invitation letter and patient information leaflet explaining the study in more detail and provided researcher contact details, and focus group dates. Approximately 1 week after initial contact, potential focus group participants were contacted again by members of the ADAPTT study team to confirm attendance. On the day of the focus groups two qualitative researchers, members of the National Institute for Health Research Applied Research Collaboration West (NIHR ARC West) answered questions and addressed concerns specific to the study, data collection process and use of data, before participants formally consented to take part by completing an informed consent form.

Data collection

Focus groups were conducted between June and July 2017. Three experienced qualitative researchers cofacilitated the four focus groups (two cofacilitators were present at each focus group; CP was present during all focus groups). A topic guide (online supplemental material) was used to explore the following:

1. Participants’ views on and satisfaction with the information they were given on DAPT; information seeking and perceived information needs.

2. Issues related to adherence.

3. Issues related to bleeding and accessing healthcare professionals to discuss medication.

Each focus group lasted between 1 and 1.5 hours. All focus groups were recorded using an encrypted digital audio recorder, and audio files were fully transcribed, anonymised and checked for accuracy.

Qualitative data analysis

Anonymised focus group transcripts were imported into QSR NVivo V.11 data management software to aid data coding and management, and analysed using a framework approach.18 Focus group data were initially coded deductively, guided by the topics informing group discussions. In iterative rounds of analysis, further codes were inductively created within these initial categories to reflect the issues spontaneously raised by participants during the discussion, which were subsequently categorised under higher order themes. Using a framework approach,18 data were scrutinised for differences and similarities within and across themes, coronary intervention group (PCI, CABG and ACS) and focus groups/ time frames for antiplatelet therapy. One researcher (CP) led the analysis, with the coding frame being developed in collaboration with the coinvestigators. The team met regularly to discuss the coding framework and themes, and any implications for ongoing data collection, to ensure trustworthiness, credibility and rigour.

Participants

Twenty-one patients were recruited, the majority of which had received PCI and CABG interventions, and only one was medically treated ACS (table 1 for patient demographic characteristics). Nine participants had been taking DAPT for up to 3 months, and 12 between nine and 12 months. Of the 21 participants, only one was a woman. Average age was 66 years, ranging between 48 and 88 years of age. Participants recruited represented the spectrum of social deprivation categories captured by the Index of Multiple Deprivation, a relative measure of social deprivation of neighbourhoods in the UK, with equal numbers of participants recruited from the most and least deprived areas. The spouse of one participant attending one of the two ‘0–3 months’ groups chose to sit in during the focus group and contributed to the discussion but is not included in table 1. Four out of nine participants in the ‘0–3 months’ group, and 6 out of 12 participants in the ‘9–12 months’ group reported experiencing ‘nuisance bleeding’. Three participants in the ‘0–3 months’ group and two in the ‘9–12 months’ group reported that they had not experienced any side effects from their DAPT medication.

Findings

Comparisons between the narratives of patients from the three coronary intervention groups, and those at either of the two stages of treatment, did not highlight any differences in attitudes or beliefs about adherence and information seeking. Most participants from the two treatment duration groups reported nuisance bleeding to be mild and not result in non-adherence. Differences in experiences and perspectives between groups are reported where relevant

Research considerations and implications for clinical practice

Our findings mirror previous studies highlighting the role of patient medication knowledge in encouraging adherence,11 19 and the need for education interventions that promote medication literacy, rather than simply impart information.2 12 14 Medication literacy is a medication-specific aspect of health literacy discussed in the context of medication adherence, and medication side effects.20 It refers to ‘the degree to which individuals can obtain, comprehend, communicate, calculate and process patient-specific information about their medications to make informed medication and health decisions’.20 Family members were actively involved in medication management and adherence, and in accessing information, while social networks were important sources of emotional, informational and practical support. Findings reiterate the role of social networks in adherence,²¹ the limitations of focusing on individual health literacy levels,22 and the need for a family-centred approach when designing education interventions.1 2

Patients need to be informed of postdischarge DAPT risks to increase awareness and inform help-seeking behaviours,5 but there are challenges to effectively communicating information when patients are not in frequent contact with the healthcare system in the long term.12 So far, patient education interventions have mainly been professional, rather than patient-led, and have focused on short-term, knowledge-specific outcomes. Interventions have not taken into account how adherence is impacted on by patient needs and preferences, and the context in which patients are self-managing their condition for example, patient–doctor relationships and delivery of care.2 14

Our study identified contextual factors impacting on medication literacy, relevant when designing medication education interventions. Lack of patient-centred medication counselling meant individual informational needs were not always addressed, for example, women-specific needs. Participants’ psychological and physical state at the time counselling was offered was another factor compromising ability and motivation to engage during the information exchange process. Such findings highlight limitations of patient counselling in hospital settings,23 and emphasise the need for appropriately timed, needs-based counselling.24 Frequent contact with health professionals throughout patients’ treatment may address medication-specific concerns and information gaps.20

Many of our participants preferred to access specialists for medication management, but GPs in primary care settings had overall care responsibility. Participants in many cases had low confidence in the advice given by GPs, who they believed lacked an expert understanding of their treatment regimes. Long-waiting times to see specialists impacted on access to secondary care. Only a small minority of participants had attended cardiac rehabilitation sessions, and these described these sessions as enabling access to expert information and social support. Clinical care pathways allowing for continuity of care across secondary and primary care boundaries are important for enabling patients to access information and meet demands arising from self-managing their care.25 A better understanding of patients’ medication management experiences along the secondary and primary care continuum, and with rehabilitation interventions, can inform care delivery and (re)designing of care pathways.26

There is a need to better understand patients’ perspectives of the spectrum of pharmacotherapeutic agents they are prescribed, collectively and individually. Polypharmacy hindered symptom recognition and compromised care experiences during interactions with health professionals. These findings reflect others highlighting polypharmacy27 and comorbidity28 as risk factors for medication non-adherence in patients with heart disease. Participants were more likely to report intentions to make changes to medication regimens other than DAPT, for example, statins, and held more negative attitudes towards such medication. It is not clear why patients hold opposing attitudes towards these agents, or what informs their risk and benefit assessments. Studies have reported disabling symptoms to result in discontinuation and non-adhering to the regimen symptoms are attributed to,23 whereas the prospect of taking lifelong medications can also decrease adherence motivation.24 Other studies have highlighted a negative portrayal of statins in the UK press29 as a factor in patients’ negative attitudes towards statins.30

Strengths and limitations

All research stages were grounded in patients’ experience, thus addressing calls for research facilitating patient and family-centred interventions.1 2 Recruitment targeted patients who had undergone three different coronary interventions, and at the early and end stages of DAPT to capture different experiences and perspectives. Focus groups allow for elucidating the range of views and experiences present in a group of participants,17 but may suppress or censor individual perspectives or topics that might deviate from those adopted by the group.17 Perspectives emerging from this study are also specific to individuals choosing to participate in the study, for example, individuals physically able to travel to and from focus groups and participate in a relatively lengthy group discussion. The physical demands of participating might have prevented more frail patients from attending. Future research should explore individual patient experiences in more depth.

Findings were presented to and endorsed by the ADAPTT study PPI group giving credibility to findings. Only one woman took part in our study, reflecting the under-representation of women in heart disease research.31 Participants represented areas of both high and low socioeconomic deprivation, but all were from a white English ethnic background. We highlight the need for more research to explore women’s needs31 and patients from ethnic minority backgrounds whose experiences of heart disease32 and health literacy22 can differ from those of the majority population.