Barriers of and strategies for shared decision‐making implementation in the care of metastatic breast cancer: A qualitative study among patients and healthcare professionals in an Asian country

BackgroundShared decision‐making has been shown to improve the quality of life in metastatic breast cancer patients in high‐literacy and high‐resource settings. However, limited studies have examined the cultural preferences of metastatic breast cancer patients with shared decision‐making implementation and the barriers encountered in an Asian setting where societal norms predominate and physician decision‐making is at the forefront. This paper aims to identify (1) barriers to practising shared decision‐making faced by healthcare professionals and patients and (2) strategies for implementing shared decision‐making in the context of metastatic breast cancer management in Malaysia.MethodsWe conducted a qualitative study involving 12 patients diagnosed with metastatic breast cancer, 16 healthcare professionals and 5 policymakers from surgical and oncology departments at public healthcare centres in Malaysia. Semi‐structured in‐depth interviews and focus group discussions were conducted. The interviews were recorded, transcribed verbatim and analysed using the thematic approach. Nvivo software was used to manage and analyse the data.ResultsFive main themes emerged from the study: healthcare provider–patient communication, workforce availability, cultural and belief systems, goals of care and paternalism versus autonomy. Other strategies proposed to overcome barriers to implementing shared decision‐making were training of healthcare professionals and empowering nurses to manage patients'' psychosocial issues.ConclusionThis study found that practising shared decision‐making in the public health sector remains challenging when managing patients with metastatic breast cancer. The utilization of decision‐making tools, patient empowerment and healthcare provider training may help address the system and healthcare provider–patient barriers identified in this study.Patient or Public ContributionPatients were involved in the study design, recruitment and analysis.     

Reimagining consumer involvement: Resilient system indicators in the COVID‐19 pandemic response in New South Wales,Australia

BackgroundReflections on the response to the COVID‐19 pandemic often evoke the concept of ‘resilience’ to describe the way health systems adjusted and adapted their functions to withstand the disturbance of a crisis, and in some cases, improve and transform in its wake. Drawing from this, this study focuses on the role of consumer representatives in healthcare services in initiating changes to the way they participated in the pandemic response in the state of New South Wales in Australia.MethodsIn‐depth interviews were conducted with two cohorts of consumer representatives. Cohort A included experienced and self‐identified consumer leaders, who worked together in a COVID‐19 Consumer Leaders Taskforce; Cohort B included participants outside of this group, and purposively included consumer representatives from rural and regional areas, and culturally and linguistically diverse communities.ResultsThe pause in consumer engagement to support health service decision‐making in responding to the pandemic forced consumer representatives to consider alternative approaches to participate. Some initiated networking with each other, forming new collaborations to produce consumer‐led research and guidelines on pandemic‐related patient care. Others mobilized support from community and politicians to lobby for specific healthcare issues in their local areas.ConclusionThe response to the COVID‐19 pandemic made visible the brittle nature of previous engagement processes of involving consumers in organizational design and governance. However, the momentum for proactive self‐organization in an unexpected crisis created space for consumer representatives to reset and reimagine their role as active partners in health services. Their ability to adapt and adjust ways of working are key assets for a resilient health system.Patient or Public ContributionThis project is a collaborative study between academic researchers and health consumer (patient and public) representatives. It followed the principles of codesign and coresearch, whereby both consumer representatives and academic researchers contributed equally to all stages of the project. The study was cofunded by both academic institutions and consumer representative organizations.     

Chronic and rare disease patients' access to healthcare services during a health crisis: The example of the COVID‐19 pandemic in Turkey

ObjectiveThe restructuring of healthcare provision for the coronavirus disease 2019 (COVID‐19) pandemic caused disruptions in access for patients with chronic or rare diseases. This study explores the experiences of patients with chronic or rare diseases in access to healthcare services in Turkey during the COVID‐19 pandemic.MethodsSemi‐structured interviews were conducted with representatives (n = 10) of patient organisations (n = 9) based in Istanbul. Thematic analysis with an inductive approach was conducted to analyse the responses obtained through the interviews.ResultsThe lack of clinical information at the beginning of the pandemic caused fear among patients with chronic or rare diseases. Patients experienced obstacles in access to healthcare services because of the overcrowding of hospitals with COVID‐19 patients. Some treatment procedures were cancelled or postponed by physicians. Of these procedures, some were medically vital for those patients, leading to or exacerbating further health problems. The most positive measures that patients identified were where the Social Security Institution introduced regulations to facilitate access to prescribed medicine for chronic patients. Information exchange between the doctors and their patients was important to alleviate the uncertainty and reduce the anxiety among patients.DiscussionAccess problems experienced by patients during the COVID‐19 pandemic were a complex mix of factors including shortages and physical barriers, but also perceptions of barriers. The findings of this study show that patient organisations can provide insights on disease‐specific experiences and problems that are very valuable to improve access to healthcare services to achieve the universal health coverage target. Hence, this study emphasises the inclusion of patient organisations in decision‐making processes during times of health crises.Public ContributionRepresentatives of patient organisations participated in the interviews.     

Exploring motivations and resistances for implementing shared decision‐making in clinical practice: A systematic review based on a structure–process–outcome model

ObjectiveShared decision‐making (SDM) as a multicollaborative approach is vital for facilitating patient‐centred care. Considering the limited clinical practice, we attempted to synthesize the motivations and resistances, and investigate their mutual relationships for advancing the implementation of SDM.MethodsA comprehensive systematic review using Preferred Reporting Items for Systematic Review and Meta‐Analysis guidelines was performed. ‘Shared decision making’ was searched as the mesh term through PubMed, Web of Science and EBSCO from 2000 to 2021, and the quality of literature was appraised using the QualSyst Tool. Motivations and resistances were categorized based on content analysis and the ‘structure–process–outcome’ model.ResultsFrom 8319 potential citations, 105 were included, comprising 53 qualitative studies (the average quality score is 0.92) and 52 quantitative studies (the average quality score is 0.95). A total of 42 categories of factors were identified into 11 themes and further grouped into three dimensions: structure, process and outcome. The structure dimension comprised six themes (71.43%), the process dimension contained four themes (11.01%) and the outcome dimension covered only one theme. Across all categories, decision‐making time and patients'' decision preparedness in the process dimension were the most reported, followed by physicians'' communication skills and health care environment in the structure dimension. Analysis of implementation of SDM among various types of diseases showed that more influencing factors were extracted from chronic diseases and unspecified disease decisions.ConclusionsThe major determinants for the implementation of SDM are focused on the structural dimension, which challenges the health systems of both developed and low‐ and middle‐income countries. Furthermore, we consider it important to understand more about the interactions among the factors to take integrated measures to address the problems and to ensure the effectiveness of implementing SDM.Patient or Public ContributionPatients, healthcare professionals and other stakeholders articulated their perspectives on the implementation of SDM actively, and these were adopted and analysed in this study. However, the above‐mentioned individuals were not directly involved in the process of this study. Protocol was registered on PROSPERO (CRD42021259309).     

A codevelopment process to advance methods for the use of patient‐reported outcome measures and patient‐reported experience measures with people who are homeless and experience chronic illness

IntroductionPeople who experience social disadvantage including homelessness suffer from numerous ill health effects when compared to the general public. Use of patient‐reported outcome measures (PROMs) and patient‐reported experience measures (PREMs) enables collection of information from the point of view of the person receiving care. Involvement in research and health care decision‐making, a process that can be facilitated by the use of PROMs and PREMs, is one way to promote equity in care.MethodsThis article reports on a codevelopment and consultation study investigating the use of PROMs and PREMs with people who experience homelessness and chronic illness. Data were analysed according to interpretative phenomenological analysis.ResultsCommittee members with lived experience identified three themes for the role of PROMs and PREMs in health care measurement: trust and relationship‐building; health and quality of life; and equity, alongside specific recommendations for the design and administration of PROMs and PREMs. The codevelopment process is reported to demonstrate the meaningful investment in time, infrastructure and relationship‐building required for successful partnership between researchers and people with lived experience of homelessness.ConclusionPROMs and PREMs can be meaningful measurement tools for people who experience social disadvantage, but can be alienating or reproduce inequity if they fail to capture complexity or rely on hidden assumptions of key concepts.Patient or Public ContributionThis study was conducted in active partnership between researchers and people with experience of homelessness and chronic illness, including priority setting for study design, data construction, analysis and coauthorship on this article.     

Shared decision‐making in standardized cancer patient pathways in Norway—Narratives of patient experiences

BackgroundCancer patient pathways (CPPs) were implemented in Norway in 2015–2017 to advance cancer diagnostics and treatment initiation. The aim of CPPs is to ensure standardized waiting times, but also to strengthen patient participation and shared decision‐making. This study investigates how patients enrolled in a CPP experienced shared decision‐making.MethodsThis study comprised of 19 individual semistructured interviews with patients who had been enrolled in a CPP at three hospitals in Norway. Twelve patients had breast cancer, four patients had prostate cancer and three patients had malignant melanoma. We analyzed their experiences using a narrative approach.FindingsThis study showed how participating in a standardized CPP provided different possibilities for shared decision‐making. The patients'' narratives of shared decision‐making in CPPs included stories from the three cancer diagnoses through the following themes: (1) The predictable safeness of standardizations, (2) the ambivalence of making decisions and (3) opposing standardizations and pushing for action.ConclusionStandardized CPPs provided patients with predictability and safety. Shared decision‐making was possible when the cancer diagnoses supported preference‐sensitive treatment options. Balancing standardizations with individualized care is necessary to facilitate patient participation in CPPs, and the possibility of shared decision‐making needs to be discussed for each specific CPP.Patient or Public ContributionA service user representative from the Norwegian Cancer Society participated in designing this study.     

Leveraging the timing and frequency of patient decision aids in longitudinal shared decision‐making: A narrative review and applied model

IntroductionShared decision‐making (SDM) is intended to increase patient‐centredness of medical decision‐making for patients with acute and chronic conditions. Concurrently, patient decision aids (PtDAs) can supplement SDM by providing information to guide communication between patients and healthcare providers. Because of the prevalence of chronic conditions, where decisions may be extended or recurring, we sought to explore how effectively these tools have been leveraged in this context.MethodsWe conducted a narrative review of the literature on both SDM and PtDAs, searching PubMed and Boston University''s library database search tool for English‐language articles published from January 2005 until March 2021. Additional search terms focused on temporality. Drawing from our findings, we developed a combined framework to highlight areas for future research using the discussion of end‐of‐life decisions as an exemplar to illustrate its relevance to chronic care contexts.ResultsAfter screening 57 articles, we identified 25 articles that fulfilled the inclusion criteria on SDM, PtDA use and temporality for chronic care. The literature on SDM highlighted time outside of the medical visit and opportunity to include outside decision partners as important elements of the process. PtDAs were commonly evaluated for process‐related and proximal outcomes, but less often for distal outcomes. Early evidence points to the value of comparative outcome evaluation based on the timing of PtDA distribution.ConclusionOur review of the literature on SDM and PtDAs reveals less attention to the timing of PtDAs relative to that of SDM. We highlight the need for further study of timing in PtDA use to improve longitudinal SDM for chronic care. The model that we propose in our discussion provides a starting point for future research on PtDA efficacy.Patient or Public ContributionFive patient consultants provided input and feedback on the development and utility of our model.     

Rapid development of a COVID‐19 care planning decision‐aid for family carers of people living with dementia

IntroductionCOVID‐19 has disproportionately affected people living with dementia and their carers. Its effects on health and social care systems necessitated a rapid‐response approach to care planning and decision‐making in this population, with reflexivity and responsiveness to changing individual and system needs at its core. Considering this, a decision‐aid to help families of persons with dementia was developed.ObjectivesTo coproduce with people living with dementia, and the people who care for them, a decision‐aid for family carers of people living with dementia, to support decisions during the COVID‐19 pandemic and beyond.MethodsSemi‐structured interviews were undertaken in 2020 with: (1) staff from two English national end‐of‐life and supportive care organizations; and (2) people living with dementia and family carers. Simultaneously, a rapid review of current evidence on making decisions with older people at the end of life was undertaken. Evidence from these inputs was combined to shape the decision‐aid through a series of workshops with key stakeholders, including our patient and public involvement group, which consisted of a person living with dementia and family carers; a group of clinical and academic experts and a group of policy and charity leads.ResultsThe rapid review of existing evidence highlighted the need to consider both process and outcome elements of decision‐making and their effects on people living with dementia and their families. The qualitative interviews discussed a wide range of topics, including trust, agency and confusion in making decisions in the context of COVID‐19. The decision‐aid primarily focussed on care moves, legal matters, carer wellbeing and help‐seeking.ConclusionsCombining different sources and forms of evidence was a robust and systematic process that proved efficient and valuable in creating a novel decision‐aid for family carers within the context of COVID‐19. The output from this process is an evidence‐based practical decision‐aid coproduced with people living with dementia, family carers, clinical and academic experts and leading national dementia and palliative care organizations.Patient or Public ContributionWe worked with people living with dementia and family carers and other key stakeholders throughout this study, from study development and design to inclusion in stakeholder workshops and dissemination.     

Patients with low activation level report limited possibilities to participate in cancer care

BackgroundCancer care trajectories are often complex, with potent multimodality treatments and multiple interactions with health care providers. Communication and coordination are challenging and the patients'' responsibilities to take on more active roles in their own care are increasing.ObjectiveThis study aimed to investigate associations between patient activation level and participation in cancer care, sociodemographic characteristics, clinical data, health‐related quality of life (HRQoL) and helpfulness of received information.MethodsIn this cross‐sectional population‐based study, patients completed questionnaires on patient activation, perceived participation, HRQoL, helpfulness of received information and sociodemographic characteristics. Responses to the patient activation measures (PAMs) were classified into four levels (higher levels indicating more activation). Data on age, sex and cancer diagnosis were collected from the Swedish Cancer Register.ResultsData from 682 patients were analysed. On comparing patients at PAM levels 1 and 4, the latter reported significantly higher possibilities to influence care decisions (46.6% vs. 20.8%) and to ask questions regarding treatment and care (93.4% vs. 68.4%). Patients at PAM level 4 reported wanting to influence decision‐making to a higher extent, compared with patients at other PAM levels, and reported clinically significantly higher HRQoL. No significant differences were found regarding sociodemographic characteristics.ConclusionWe found strong associations between perceived patient participation and activation levels, with limited possibility for participation among those with lower activation levels.Patient or Public ContributionDiscussions with patient representatives have raised the importance of participation. The preliminary findings were presented and discussed in a workshop with representatives from 21 cancer patient advocacy groups.     

A valued voice: A qualitative analysis of parental decision‐making preferences in emergent paediatric surgery

IntroductionShared decision‐making, with an emphasis on patient autonomy, is often advised in healthcare decision‐making. However, this may be difficult to implement in emergent settings. We have previously demonstrated that when considering emergent operations for their children, parents prefer surgeon guidance as opposed to shared decision‐making. Here, we interviewed parents of paediatric patients who had undergone emergent operations to better understand parental decision‐making preferences.MethodsParents of paediatric patients who underwent surgery over the past 5 years at a University‐based, tertiary children''s hospital for cancer, an emergent operation while in the neonatal intensive care unit (NICU) or extracorporeal membrane oxygenation (ECMO) were invited to complete a 60‐min semi‐structured interview. Interviews were digitally recorded and transcribed verbatim. Thematic content analysis was performed via deductive and inductive analysis. An iterative approach to thematic sampling/data analysis was used.ResultsThematic saturation was achieved after 12 interviews (4 cancer, 5 NICU and 3 ECMO). Five common themes were identified: (1) recommendations from surgeons are valuable; (2) ‘lifesaving mode’: parents felt there were no decisions to be made; (3) effective ways of obtaining information about treatment; (4) shared decision‐making as a ‘dialogue’ or ‘discussion’ and (5) parents as a ‘valued voice’ to advocate for their children.ConclusionsWhen engaging in decision‐making regarding emergent surgical procedures for their children, parents value a surgeon''s recommendation. Parents felt that discussion or dialogue with surgeons defined shared decision‐making, and they believed that the opportunity to ask questions gave them a ‘valued voice’, even when they felt there were no decisions to be made.Patient or Public ContributionFor this study, we interviewed parents of paediatric patients who had undergone emergent operations to better understand parental decision‐making preferences. Parents thus provided all the data for the study.     

Do patient engagement interventions work for all patients? A systematic review and realist synthesis of interventions to enhance patient safety

BackgroundPatients are increasingly being asked for feedback about their healthcare and treatment, including safety, despite little evidence to support this trend. This review identifies the strategies used to engage patients in safety during direct care, explores who is engaged and determines the mechanisms that impact effectiveness.MethodsA systematic review was performed of seven databases (CINAHL, Cochrane, Cochrane‐Central, Embase, ISI Web of Science, Medline, PsycINFO) that included research published between 2010 and 2020 focused on patient engagement interventions to increase safety during direct care and reported using PRISMA. All research designs were eligible; two reviewers applied criteria independently to determine eligibility and quality. A narrative review and realist synthesis were conducted.ResultsTwenty‐six papers reporting on twenty‐seven patient engagement strategies were included and classified as consultation (9), involvement (7) and partnership (11). The definitions of ‘patient engagement’ varied, and we found limited details about participant characteristics or interactions between people utilizing strategies. Collaborative strategy development, a user‐friendly design, proactive messaging and agency sponsorship were identified as mechanisms to improve engagement about safety at the point of direct care.ConclusionsAgency sponsorship of collaboration between staff and patients is essential in the development and implementation of strategies to keep patients safe during direct care. Insufficient details about participant characteristics and patient–provider interactions limit recommendations for practice change. More needs to be learned about how patients are engaged in discussions about safety, particularly minority groups unable to engage with standard information.Patient or Public ContributionReview progress was reported to the CanEngage team, including the consumer steering group, to inform project priorities (PROSPERO CRD42020196453).     

Patients as team members: Factors affecting involvement in treatment decisions from the perspective of patients with a chronic condition

BackgroundActive patient involvement in treatment decisions is seen as a feature of patient‐centred care that will ultimately lead to better healthcare services and patient outcomes. Although many factors have been identified that influence patient involvement in treatment decisions, little is known about the different views that patients have on which factors are most important.ObjectiveThis study explores the views of patients with a chronic condition on factors influencing their involvement in treatment decisions.DesignQ‐methodology was used to study the views of patients. Respondents were asked to rank a set of 42 statements from the least important to the most important for active patient involvement in treatment decision‐making. The set of 42 statements was developed based on a literature search and a pilot in which two external researchers, 15 patients and four healthcare professionals participated. A total of 136 patients with one of three major chronic conditions were included: diabetes types 1 and 2, respiratory disease (i.e., chronic obstructive pulmonary disease and asthma) and cancer (i.e., breast cancer and prostate cancer). Data were collected in a face‐to‐face interview setting in the Netherlands.ResultsFour distinct views on the factors influencing active patient involvement were identified among patients with a chronic condition. (1) Enabled involvement: the extent to which patients are facilitated and empowered to participate will lead to patient involvement. (2) Relationship‐driven involvement: the relationship between patients and healthcare professionals drives patient involvement. (3) Disease impact‐driven involvement: the severity of disease drives patient involvement. (4) Cognition‐driven involvement: knowledge and information drive patient involvement.Discussion and ConclusionFrom the patients'' perspective, this study shows that there is no one‐size‐fits‐all approach to involving patients more actively in their healthcare journey. Strategies aiming to enhance active patient involvement among patients with a chronic condition should consider this diversity in perspectives among these patients.Patient ContributionPatients are the respondents as this study researches their perspective on factors influencing patient involvement. In addition, patients were involved in pilot‐testing the statement set.     

Clinician perspectives on clinical decision support systems in lung cancer: Implications for shared decision‐making

BackgroundLung cancer treatment decisions are typically made among clinical experts in a multidisciplinary tumour board (MTB) based on clinical data and guidelines. The rise of artificial intelligence and cultural shifts towards patient autonomy are changing the nature of clinical decision‐making towards personalized treatments. This can be supported by clinical decision support systems (CDSSs) that generate personalized treatment information as a basis for shared decision‐making (SDM). Little is known about lung cancer patients'' treatment decisions and the potential for SDM supported by CDSSs. The aim of this study is to understand to what extent SDM is done in current practice and what clinicians need to improve it.ObjectiveTo explore (1) the extent to which patient preferences are taken into consideration in non‐small‐cell lung cancer (NSCLC) treatment decisions; (2) clinician perspectives on using CDSSs to support SDM.DesignMixed methods study consisting of a retrospective cohort study on patient deviation from MTB advice and reasons for deviation, qualitative interviews with lung cancer specialists and observations of MTB discussions and patient consultations.Setting and ParticipantsNSCLC patients (N = 257) treated at a single radiotherapy clinic and nine lung cancer specialists from six Dutch clinics.ResultsWe found a 10.9% (n = 28) deviation rate from MTB advice; 50% (n = 14) were due to patient preference, of which 85.7% (n = 12) chose a less intensive treatment than MTB advice. Current MTB recommendations are based on clinician experience, guidelines and patients'' performance status. Most specialists (n = 7) were receptive towards CDSSs but cited barriers, such as lack of trust, lack of validation studies and time. CDSSs were considered valuable during MTB discussions rather than in consultations.ConclusionLung cancer decisions are heavily influenced by clinical guidelines and experience, yet many patients prefer less intensive treatments. CDSSs can support SDM by presenting the harms and benefits of different treatment options rather than giving single treatment advice. External validation of CDSSs should be prioritized.Patient or Public ContributionThis study did not involve patients or the public explicitly; however, the study design was informed by prior interviews with volunteers of a cancer patient advocacy group. The study objectives and data collection were supported by Dutch health care insurer CZ for a project titled ‘My Best Treatment’ that improves patient‐centeredness and the lung cancer patient pathway in the Netherlands.     

Blood tests in primary care: A qualitative study of communication and decision‐making between doctors and patients

ObjectiveBlood tests are commonly used in primary care as a tool to aid diagnosis, and to offer reassurance and validation for patients. If doctors and patients do not have a shared understanding of the reasons for testing and the meaning of results, these aims may not be fulfilled. Shared decision‐making is widely advocated; yet, most research focusses on treatment decisions rather than diagnostic decisions. The aim of this study was to explore communication and decision‐making around diagnostic blood tests in primary care.MethodsQualitative interviews were undertaken with patients and clinicians in UK primary care. Patients were interviewed at the time of blood testing, with a follow‐up interview after they received test results. Interviews with clinicians who requested the tests provided paired data to compare clinicians'' and patients'' expectations, experiences and understandings of tests. Interviews were analysed thematically using inductive and deductive coding.ResultsA total of 80 interviews with 28 patients and 19 doctors were completed. We identified a mismatch in expectations and understanding of tests, which led to downstream consequences including frustration, anxiety and uncertainty for patients. There was no evidence of shared decision‐making in consultations preceding the decision to test. Doctors adopted a paternalistic approach, believing that they were protecting patients from anxiety.ConclusionPatients were not able to develop informed preferences and did not perceive that choice is possible in decisions about testing, because they did not have sufficient information and a shared understanding of tests. A lack of shared understanding at the point of decision‐making led to downstream consequences when test results did not fulfil patients'' expectations. Although shared decision‐making is recommended as best practice, it does not reflect the reality of doctors'' and patients'' accounts of testing; a broader model of shared understanding seems to be more relevant to the complexity of primary care diagnosis.Patient or Public ContributionA patient and public involvement group comprising five participants with lived experience of blood testing in primary care met regularly during the study. They contributed to the development of the research objectives, planning recruitment methods, reviewing patient information leaflets and topic guides and also contributed to discussion of emerging themes at an early stage in the analysis process.     

Representation in participatory health care decision‐making: Reflections on an Application‐Oriented Model

ContextThe involvement of lay people in health care decision‐making processes is now the norm in many countries. However, one important aspect of participation has not received sufficient attention in the past and remains underexplored: representation.ObjectiveThis paper explores the question of how public participation efforts in collective health care decision‐making processes can attempt to aim for legitimate representation so that those individuals or groups not present can be taken into account in the decisions affecting them. This paper argues that to make decisions that effectively address those affected, representation needs to be seen as a relevant part of any participatory setting. To support this argument, the paper outlines the concepts of participation and representation and transfers them to health care contexts.ResultsA conceptual reflection on responsiveness and the characteristics of representative actors in representative‐participatory settings is introduced, which could provide actors planning to conduct participatory health care projects with tools to reflect on the merits and possible flaws of participatory constellations.Patient or Public ContributionThe paper contributes to improving public participation in health care decision‐making.