Background: Despite advances in treatment of pain in advanced cancer, it remains a major
Objectives The aim of this paper was to identify current barriers, facilitators and experiences of raising and discussing palliative care with people with advanced cancer. Methods Semi‐structured interviews were conducted with patients with advanced cancer and healthcare professionals (HCPs). Patients were included who had and had not been referred to palliative care. Transcripts were analysed using framework analysis. Results Twenty‐four patients and eight HCPs participated. Two overarching themes and five sub‐themes emerged: Theme one—referral process: timing and triggers, responsibility. Theme two—engagement: perception of treatment, prognosis and palliative care, psychological and emotional preparedness for discussion, and understanding how palliative care could benefit present and future care. Conclusion There is a need to identify suitable patients earlier in their cancer trajectory, address misconceptions about palliative care, treatment and prognosis, and better prepare patients and HCPs to have meaningful conversations about palliative care. Patients and HCPs need to establish and communicate the relevance of palliative care to the patient's current and future care, and be clear about the referral process.
BackgroundA range of policy initiatives have addressed inequalities in healthcare and health outcomes. Local pay-for-performance schemes for primary care have been advocated as means of enhancing clinical ownership of the quality agenda and better targeting local need compared with national schemes such as the UK Quality and Outcomes Framework (QOF). We investigated whether professionals’ experience of a local scheme in one English National Health Service (NHS) former primary care trust (PCT) differed from that of the national QOF in relation to the goal of reducing inequalities.MethodsWe conducted retrospective semi-structured interviews with primary care professionals implementing the scheme and those involved in its development. We purposively sampled practices with varying levels of population socio-economic deprivation and achievement. Interviews explored perceptions of the scheme and indicators, likely mechanisms of influence on practice, perceived benefits and harms, and how future schemes could be improved. We used a framework approach to analysis.ResultsThirty-eight professionals from 16 general practices and six professionals involved in developing local indicators participated. Our findings cover four themes: ownership, credibility of the indicators, influences on behaviour, and exacerbated tensions. We found little evidence that the scheme engendered any distinctive sense of ownership or experiences different from the national scheme. Although the indicators and their evidence base were seldom actively questioned, doubts were expressed about their focus on health promotion given that eventual benefits relied upon patient action and availability of local resources. Whilst practices serving more affluent populations reported status and patient benefit as motivators for participating in the scheme, those serving more deprived populations highlighted financial reward. The scheme exacerbated tensions between patient and professional consultation agendas, general practitioners benefitting directly from incentives and nurses who did much of the work, and practices serving more and less affluent populations which faced different challenges in achieving targets.ConclusionsThe contentious nature of pay-for-performance was not necessarily reduced by local adaptation. Those developing future schemes should consider differential rewards and supportive resources for practices serving more deprived populations, and employing a wider range of levers to promote professional understanding and ownership of indicators.
PurposeUptake of preventive therapy for women at increased breast cancer risk in England is unknown following the introduction of UK clinical guidelines in 2013. Preventive therapy could create socioeconomic inequalities in cancer incidence if it is more readily accepted by particular socio-demographic groups. In this multicentre study, we investigated uptake of tamoxifen and evaluated socio-demographic and clinical factors associated with initiation. We explored women’s experiences of treatment decision-making using qualitative interview data.MethodsBetween September 2015 and December 2016, women (n = 732) attending an appointment at one of 20 centres in England to discuss breast cancer risk were approached to complete a survey containing socio-demographic details and nulliparity. Of the baseline survey respondents (n = 408/732, 55.7% response rate), self-reported uptake of tamoxifen at 3-month follow-up was reported in 258 (63.2%). Sixteen women participated in semi-structured interviews.ResultsOne in seven (38/258 = 14.7%) women initiated tamoxifen. Women who had children were more likely to report use of tamoxifen than those without children (OR = 5.26; 95%CI: 1.13–24.49, p = 0.035). Interview data suggested that women weigh up risks and benefits of tamoxifen within the context of familial commitments, with exposure to significant other’s beliefs and experiences of cancer and medication a basis for their decision.ConclusionsUptake of tamoxifen is low in clinical practice. There were no socio-demographic differences in uptake, suggesting that the introduction of breast cancer preventive therapy is unlikely to create socioeconomic inequalities in cancer incidence. Women’s decision-making was influenced by familial priorities, particularly having children.Electronic supplementary materialThe online version of this article (10.1007/s10549-018-4775-1) contains supplementary material, which is available to authorized users.
In cancer care, there are emerging information and communication technology systems being developed, enabling real-time information sharing between patients and health professionals. This study explored health professionals’ and patients’ perceptions of their engagement with an information and communication technology system for pain management to understand the mechanisms that could support implementation into routine palliative care practice. This was a qualitative study, embedded within a randomised control trial, using semi-structured face-to-face interviews. Data were analysed using thematic analysis. The role of health professionals was a key component to patient engagement with the information and communication technology system. Where patients engaged with the information and communication technology system, both patients and health professionals reported benefits to system use in addition to usual care. Implementation issues were identified that can be used to guide future system development to support pain management in the context of routine clinical care in palliative care services. Where interventions are dependent on multiple providers, collaborative working and consideration of the context within which they are set are needed.
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