Sarah McLachlan

Symptom perceptions and help-seeking behaviour prior to lung and colorectal cancer diagnoses: a qualitative study

Background. Lung and colorectal cancer are common and have high UK mortality rates. Early diagnosis is important in reducing cancer mortality, but the literature on lung and colorectal cancers suggests many people wait for a considerable time before presenting symptoms. Objective. To gain in-depth understanding of patients’ interpretations of symptoms of lung and colorectal cancer prior to diagnosis, and to explore processes leading to help-seeking. Methods. Semi-structured interviews were conducted with patients diagnosed with lung (N = 9) or colorectal (N = 20) cancer within the previous 12 months. Patients were asked about symptoms experienced in the period preceding diagnosis, their interpretations of symptoms, and decision making for help-seeking. Thematic analysis was conducted and comparisons drawn within and across the patient groups. Results. Patients were proactive and rational in addressing symptoms; many developed alternative, non-cancer explanations based on their knowledge and experience. Discussions with important others frequently provided the impetus to consult, but paradoxically others often initially reinforced alternative explanations. Fear and denial did not emerge as barriers to help-seeking, but help-seeking was triggered when patients’ alternative explanations could no longer be maintained, for instance due to persistence or progression of symptoms. Conclusion. Patients’ reasoning, decision making and interpersonal interactions prior to diagnosis were complex. Prompting patients for additional detail on symptoms within consultations could elicit critical contextual information to aid referral decisions. Findings also have implications for the design of public health campaigns.

Developing consensus-based policy solutions for medicines adherence for Europe: a delphi study

BackgroundNon-adherence to prescribed medication is a pervasive problem that can incur serious effects on patients’ health outcomes and well-being, and the availability of resources in healthcare systems. This study aimed to develop practical consensus-based policy solutions to address medicines non-adherence for Europe.MethodsA four-round Delphi study was conducted. The Delphi Expert Panel comprised 50 participants from 14 countries and was representative of: patient/carers organisations; healthcare providers and professionals; commissioners and policy makers; academics; and industry representatives. Participants engaged in the study remotely, anonymously and electronically. Participants were invited to respond to open questions about the causes, consequences and solutions to medicines non-adherence. Subsequent rounds refined responses, and sought ratings of the relative importance, and operational and political feasibility of each potential solution to medicines non-adherence. Feedback of individual and group responses was provided to participants after each round. Members of the Delphi Expert Panel and members of the research group participated in a consensus meeting upon completion of the Delphi study to discuss and further refine the proposed policy solutions.Results43 separate policy solutions to medication non-adherence were agreed by the Panel. 25 policy solutions were prioritised based on composite scores for importance, and operational and political feasibility. Prioritised policy solutions focused on interventions for patients, training for healthcare professionals, and actions to support partnership between patients and healthcare professionals. Few solutions concerned actions by governments, healthcare commissioners, or interventions at the system level.ConclusionsConsensus about practical actions necessary to address non-adherence to medicines has been developed for Europe. These actions are also applicable to other regions. Prioritised policy solutions for medicines non-adherence offer a benefit to policymakers and healthcare providers seeking to address this multifaceted, complex problem.

Managing Patients With Heart Failure: A Qualitative Study of Multidisciplinary Teams With Specialist Heart Failure Nurses

PURPOSE The purpose of this study was to explore the perceptions and experiences of health care clinicians working in multidisciplinary teams that include specialist heart failure nurses when caring for the management of heart failure patients. METHODS We used a qualitative in-depth interview study nested in a broader ethnographic study of unplanned admissions in heart failure patients (HoldFAST). We interviewed 24 clinicians across primary, secondary, and community care in 3 locations in the Midlands, South Central, and South West of England. RESULTS Within a framework of the role and contribution of the heart failure specialist nurse, our study identified 2 thematic areas that the clinicians agreed still represent particular challenges when working with heart failure patients. The first was communication with patients, in particular explaining the diagnosis and helping patients to understand the condition. The participants recognized that such communication was most effective when they had a long-term relationship with patients and families and that the specialist nurse played an important part in achieving this relationship. The second was communication within the team. Multidisciplinary input was especially needed because of the complexity of many patients and issues around medications, and the participants believed the specialist nurse may facilitate team communication. CONCLUSIONS The study highlights the role of specialist heart failure nurses in delivering education tailored to patients and facilitating better liaison among all clinicians, particularly when dealing with the management of comorbidities and drug regimens. The way in which specialist nurses were able to be caseworkers for their patients was perceived as a method of ensuring coordination and continuity of care.

Unplanned admissions and the organisational management of heart failure: a multicentre ethnographic, qualitative study.

Objectives Heart failure is a common cause of unplanned hospital admissions but there is little evidence on why, despite evidence-based interventions, admissions occur. This study aimed to identify critical points on patient pathways where risk of admission is increased and identify barriers to the implementation of evidence-based interventions. Design Multicentre, longitudinal, patient-led ethnography. Setting National Health Service settings across primary, community and secondary care in three geographical locations in England, UK. Participants 31 patients with severe or difficult to manage heart failure followed for up to 11 months; 9 carers; 55 healthcare professionals. Results Fragmentation of healthcare, inequitable provision of services and poor continuity of care presented barriers to interventions for heart failure. Critical points where a reduction in the risk of current or future admission occurred throughout the pathway. At the beginning some patients did not receive a formal clinical diagnosis, in addition patients lacked information about heart failure, self-care and knowing when to seek help. Some clinicians lacked knowledge about diagnosis and management. Misdiagnoses of symptoms and discontinuity of care resulted in unplanned admissions. Approaching end of life, patients were admitted to hospital when other options including palliative care could have been appropriate. Conclusions Findings illustrate the complexity involved in caring for people with heart failure. Fragmented healthcare and discontinuity of care added complexity and increased the likelihood of suboptimal management and unplanned admissions. Diagnosis and disclosure is a vital first step for the patient in a journey of acceptance and learning to self-care/monitor. The need for clinician education about heart failure and specialist services was acknowledged. Patient education should be seen as an ongoing ‘conversation’ with trusted clinicians and end-of-life planning should be broached within this context.

Sometimes we can't fix things: a qualitative study of health care professionals' perceptions of end of life care for patients with heart failure.

BackgroundAlthough heart failure has a worse prognosis than some cancers, patients often have restricted access to well-developed end of life (EoL) models of care. Studies show that patients with advanced heart failure may have a poor understanding of their condition and its outcome and, therefore, miss opportunities to discuss their wishes for EoL care and preferred place of death. We aimed to explore the perceptions and experiences of health care professionals (HCPs) working with patients with heart failure around EoL care.MethodsA qualitative in-depth interview study nested in a wider ethnographic study of unplanned admissions in patients with heart failure (HoldFAST). We interviewed 24 HCPs across primary, secondary and community care in three locations in England, UK – the Midlands, South Central and South West.ResultsThe study revealed three issues impacting on EoL care for heart failure patients. Firstly, HCPs discussed approaches to communicating with patients about death and highlighted the challenges involved. HCPs would like to have conversations with patients and families about death and dying but are aware that patient preferences are not easy to predict. Secondly, professionals acknowledged difficulties recognising when patients have reached the end of their life. Lack of communication between patients and professionals can result in situations where inappropriate treatment takes place at the end of patients’ lives. Thirdly, HCPs discussed the struggle to find alternatives to hospital admission for patients at the end of their life. Patients may be hospitalised because of a lack of planning which would enable them to die at home, if they so wished.ConclusionsThe HCPs regarded opportunities for patients with heart failure to have ongoing discussions about their EoL care with clinicians they know as essential. These key professionals can help co-ordinate care and support in the terminal phase of the condition. Links between heart failure teams and specialist palliative care services appear to benefit patients, and further sharing of expertise between teams is recommended. Further research is needed to develop prognostic models to indicate when a transition to palliation is required and to evaluate specialist palliative care services where heart failure patients are included.

Management of patient adherence to medications: protocol for an online survey of doctors, pharmacists and nurses in Europe

Introduction It is widely recognised that many patients do not take prescribed medicines as advised. Research in this field has commonly focused on the role of the patient in non-adherence; however, healthcare professionals can also have a major influence on patient behaviour in taking medicines. This study examines the perceptions, beliefs and behaviours of healthcare professionals—doctors, pharmacists and nurses—about patient medication adherence. Methods and analysis This paper describes the study protocol and online questionnaire used in a cross-sectional survey of healthcare professionals in Europe. The participating countries include Austria, Belgium, France, Greece, The Netherlands, Germany, Poland, Portugal, Switzerland, Hungary, Italy and England. The study population comprises primary care and community-based doctors, pharmacists and nurses involved in the care of adult patients taking prescribed medicines for chronic and acute illnesses. Discussion Knowledge of the nature, extent and variability of the practices of healthcare professionals to support medication adherence could inform future service design, healthcare professional education, policy and research.

A multinational cross-sectional survey of the management of patient medication adherence by European healthcare professionals

Objectives To examine which interventions healthcare professionals use to support patients with taking medicines and their perceptions about the effectiveness of those actions. Design Cross-sectional multinational study. Setting Online survey in Austria, Belgium, England, France, Germany, Hungary, The Netherlands, Poland, Portugal and Switzerland. Participants A total of 3196 healthcare professionals comprising doctors (855), nurses (1047) and pharmacists (1294) currently registered and practising in primary care and community settings. Main outcome measures Primary outcome: Responses to the question ‘I ask patients if they have missed any doses of their medication’ for each profession and in each country. Secondary outcome: Responses to 50 items concerning healthcare professional behaviour to support patients with medication-taking for each profession and in each country. Results Approximately half of the healthcare professionals in the survey ask patients with long-term conditions whether they have missed any doses of their medication on a regular basis. Pharmacists persistently report that they intervene less than the other two professions to support patients with medicines. No country effects were found for the primary outcome. Conclusions Healthcare professionals in Europe are limited in the extent to which they intervene to assist patients having long-term conditions with medication adherence. This represents a missed opportunity to support people with prescribed treatment. These conclusions are based on the largest international survey to date of healthcare professionals’ management of medication adherence.

My patients are better than yours: optimistic bias about patients' medication adherence by European health care professionals.

Objectives The objectives of this study were to determine the perceptions of European physicians, nurses, and pharmacists about the extent of nonadherence by patients in their country relative to their perception of nonadherence by their own patients, and to investigate the occurrence of optimistic bias about medication adherence. The study explored a key cognitive bias for prevalence and likelihood estimates in the context of health care professionals’ beliefs about patients’ use of medicines. Methods A cross-sectional online survey of 3,196 physicians (855), nurses (1,294), and pharmacists (1,047) in ten European countries (Austria, Belgium, England, France, Germany, Hungary, the Netherlands, Poland, Portugal, and Switzerland) was used. Results Participants differed in their perceptions of the prevalence of medication adherence initiation, implementation, and persistence present in their own patients with a chronic illness in comparison to patients with a chronic illness in general. Health care professionals demonstrated optimistic bias for initiation and persistence with medicine taking, perceiving their own patients to be more likely to initiate and persist with treatment than other patients, but reported significantly lower prevalence of medication adherence levels for their own patients than for patients in general. This finding is discussed in terms of motivational and cognitive factors that may foster optimistic bias by health care professionals about their patients, including heightened knowledge of, and positive beliefs about, their own professional competence and service delivery relative to care and treatment provided elsewhere. Conclusion Health care professionals in Europe demonstrated significant differences in their perceptions of medication adherence prevalence by their own patients in comparison to patients in general. Some evidence of optimistic bias by health care professionals about their patients’ behavior is observed. Further social cognitive theory-based research of health care professional beliefs about medication adherence is warranted to enable theory-based practitioner-focused interventions to be tested and implemented.

The implications of living with heart failure; the impact on everyday life, family support, co-morbidities and access to healthcare: a secondary qualitative analysis

BackgroundThe aim of this study was to use secondary analysis to interrogate a qualitative data set to explore the experiences of patients living with heart failure.MethodsThe data-set comprised interviews with 11 patients who had participated in an ethnographic study of heart failure focusing on unplanned hospital admissions. Following an initial review of the literature, a framework was developed with which to interrogate the data-set. This was modified in light of analysis of the first two interviews, to focus on the rich data around patients’ perceptions of living with heart failure, managing co-morbidities, accessing healthcare and the role of their family and friends, during their illness journey.ResultsRespondents described how the symptoms of heart failure impacted on their daily lives and how disruption of routine activity due to their symptoms caused them to seek medical care. Respondents disclosed the difficulties of living with other illnesses, in addition to their heart failure, particularly managing multiple and complex medication regimes and negotiating multiple appointments; all expressed a desire to return to their pre-morbid, more independent lives. Many respondents described uncertainty around diagnosis and delays in communication from their healthcare providers. The importance of family support was emphasised, but respondents worried about burdening relatives with their illness.ConclusionLiving with heart failure causes disruption to the lives of sufferers. Facilitation of access to healthcare, through good communication between services and having a strong support network of both family and clinicians can reduce the impact of heart failure on the lives of the patient and those around them.

A mixed-methods study of the implementation of medication adherence policy solutions: how do European countries compare?

Objectives We describe a key informant study that invited national medicines policy leads for the European Union member states to self-assess the level of implementation of medicines adherence initiatives in their country and the adequacy of that implementation. Interviews with medicines policy leads enabled in-depth understanding of the variation in adherence support across nations and the ways in which different nations prioritize, plan, and implement medicines adherence systems and services. Methods Ten national policy leads (Bulgaria, Denmark, Estonia, Finland, Germany, Ireland, Latvia, Lithuania, Malta, and the Netherlands) completed a self-assessment survey, and seven (Estonia, Finland, Germany, Ireland, Lithuania, Malta, and the Netherlands) engaged in a follow-up interview. Key findings Policy leads varied in the level of implementation of medication adherence solutions that they reported in their nations; most initiatives were aimed directly at patients with few initiatives at government or health care commissioner levels of action. Policy leads reported insufficient implementation of medication adherence initiatives across all potential domains. Barriers to implementation included lack of resources, strategic planning, evidence to support action, the “hidden” nature of medication adherence within policy work, and dispersed responsibility for medication adherence as a policy and practice theme. Conclusion This study has international significance and summarizes the emergent characteristics of nations with and without coordinated medication adherence activity. We highlight the importance of sharing good practice in policy formulation and implementation for medication adherence.