A skills network approach to physicians’ competence in shared decision making

BackgroundMeasurement of physicians’ competence in shared decision making (SDM) remains challenging with frequent disagreement between assessment methods.ObjectiveTo conceptualize and measure physicians’ SDM competence as an organized network of behavioural skills and to determine whether processing patient‐reported data according to this model can be used to predict observer‐rated competence.DesignSecondary analysis of an observational study.Setting and participantsPrimary and specialty outpatient care physicians and consecutively recruited adult patients with a chronic condition who faced a treatment decision with multiple acceptable choices.MeasuresNetwork parameters constructed from patients’ assessment of physicians’ SDM skills as measured by the 9‐item Shared Decision Making Questionnaire (SDM‐Q‐9) and observer‐rated SDM competence of physicians measured by three widely used observer‐rated instruments.Results29 physicians (12 female, 17 male; mean age 50.3 years) recruited 310 patients (59.4% female, 40.6% male; mean age 54.0 years) facing a decision mainly regarding type 2 diabetes (36.4%), chronic back pain (32.8%) or depressive disorder (26.8%). Although most investigated skills were interrelated, elicitation of the patient''s treatment preferences showed the strongest associations with the other skills. Network parameters of this skill were also decisive in predicting observer‐rated competence. Correlation between predicted competence scores and observer‐rated measurements ranged from 0.710 to 0.785.ConclusionsConceptualizing physicians’ SDM competence as a network of interacting skills enables the measurement of observer‐rated competence using patient‐reported data. In addition to theoretical implications for defining and training medical competences, the findings open a new way to measure physicians’ SDM competence under routine conditions.     

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.     

Shared decision making in surgery: A scoping review of the literature

BackgroundShared decision making (SDM) has been increasingly implemented to improve health‐care outcomes. Despite the mixed efficacy of SDM to provide better patient‐guided care, its use in surgery has not been studied. The aim of this study was to systematically review SDM application in surgery.DesignThe search strategy, developed with a medical librarian, included nine databases from inception until June 2019. After a 2‐person title and abstract screen, full‐text publications were analysed. Data collected included author, year, surgical discipline, location, study duration, type of decision aid, survey methodology and variable outcomes. Quantitative and qualitative cross‐sectional studies, as well as RCTs, were included.ResultsA total of 6060 studies were retrieved. A total of 148 were included in the final review. The majority of the studies were in plastic surgery, followed by general surgery and orthopaedics. The use of SDM decreased surgical intervention rate (12 of 22), decisional conflict (25 of 29), and decisional regret (5 of 5), and increased decisional satisfaction (17 of 21), knowledge (33 of 35), SDM preference (13 of 16), and physician trust (4 of 6). Time increase per patient encounter was inconclusive. Cross‐sectional studies showed that patients prefer shared treatment and surgical treatment varied less. The results of SDM per type of decision aid vary in terms of their outcome.ConclusionSDM in surgery decreases decisional conflict, anxiety and surgical intervention rates, while increasing knowledge retained decisional satisfaction, quality and physician trust. Surgical patients also appear to prefer SDM paradigms. SDM appears beneficial in surgery and therefore worth promoting and expanding in use.     

Barriers and facilitators of shared decision making in acutely ill inpatients with schizophrenia—Qualitative findings from the intervention group of a randomised‐controlled trial

BackgroundShared decision making (SDM) is appreciated as a promising model of communication between clinicians and patients. However, in acute mental health settings, its implementation is still unsatisfactory.ObjectiveThe aim of this study is to examine barriers and facilitators of SDM with acutely ill inpatients with schizophrenia.DesignA qualitative interview study was performed.Setting and ParticipantsThe analysis is based on interviews with participants (patients and staff members) of the intervention group of the randomised‐controlled SDM^PLUS trial that demonstrated a significant improvement of SDM measures for patients with schizophrenia on acute psychiatric wards.Main Variables StudiedInterviews addressed treatment decisions made during the current inpatient stay. The interviews were analysed using qualitative content analysis.ResultsA total of 40 interviews were analysed and 131 treatment decisions were identified. According to the interviewees, SDM had taken place in 29% of the decisions, whereas 59% of the decisions were made without SDM. In 16%, a clear judgement could not be made. Barriers and facilitators of SDM were categorised into patient factors, clinician factors, setting factors and others. Clinicians mostly reported patient factors (e.g., symptoms) as barriers towards SDM, which were not mirrored on the patients'' side. Facilitators included patient as well as clinician behaviour during consultations.ConclusionEven in the context of a successful SDM intervention, the implementation of SDM for patients in the very acute stages of schizophrenia is often not possible. However, strong facilitators for SDM have also been identified, which should be used for further implementation of SDM.Patient or Public ContributionDuring the development of the study protocol, meetings with user representatives were held.     

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.     

Development and field testing of a decision aid to facilitate shared decision making for adults newly diagnosed with attention‐deficit hyperactivity disorder

BackgroundThe number of individuals who are diagnosed with attention‐deficit hyperactivity disorder (ADHD) during adulthood has increased in recent years. However, there is still no decision aid (DA) to help adults newly diagnosed with ADHD make decisions regarding further treatments.ObjectiveThis study aimed to describe the development process of a DA for adults newly diagnosed with ADHD and its field testing during the shared decision‐making (SDM) process in a clinical setting.MethodsThe development process involved the creation of a DA prototype using the International Patient Decision Aid Standards criteria and revision of the prototype through the stakeholders'' reviews. The field testing of the DA compared scores before and after the SDM process on the service users'' knowledge scale, decisional conflict scale and the Conners Adult ADHD Rating Scales.ResultsThe developed DA contained options of watchful waiting with own coping skills and pharmacological treatment, which consisted of several kinds of drug options. Fifteen adults newly diagnosed with ADHD participated in the field testing. The participant decision‐making quality outcomes such as their knowledge and decisional conflict improved after the SDM process. ADHD severity did not change.ConclusionA DA for adults with ADHD was systematically developed following the international criteria. Field testing indicated that the DA could serve as a tool to facilitate the SDM process. Further research on this DA is necessary before its routine implementation.Patient or Public ContributionDuring the development process of the DA, the service users who had already been diagnosed with ADHD reviewed the DA prototype and provided feedback, which improved the final version of the DA.     

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.     

Development of a patient decision aid for patients with breast cancer who consider immediate breast reconstruction after mastectomy

PurposeThe aim of this study was to develop a patient decision aid (pDA) that could support patients with breast cancer (BC) in making an informed decision about breast reconstruction (BR) after mastectomy.MethodsThe development included four stages: (i) Establishment of a multidisciplinary team; (ii) Needs assessment consisting of semi‐structured interviews in patients and a survey among healthcare professionals (HCPs); (iii) Creation of content, design and technical system; and (iv) Acceptability and usability testing using a think‐aloud approach in patients and interviews among HCPs and representatives of the Dutch Breast Cancer Patient Organization.ResultsFrom the needs assessment, three themes were identified: Challenging period to make a decision, Diverse motivations for a personal decision and Information needed to make a decision about BR. HCPs valued the development of a pDA, especially to prepare patients for consultation. The pDA that was developed contained three parts: first, a consultation sheet for oncological breast surgeons to introduce the choice; second, an online tool including an overview of reconstructive options, the pros and cons of each option, information on the consequences of each option for daily life, exercises to clarify personal values and patient stories; and third, a summary sheet with patients’ values, preferences and questions to help inform and guide the discussion between the patient and her plastic surgeon. The pDA was perceived to be informative, helpful and easy to use by patients and HCPs.ConclusionConsistent with information needs, a pDA was developed to support patients with BC who consider immediate BR in making an informed decision together with their plastic surgeon.Patient or Public ContributionPatients participated in the needs assessment and in acceptability and usability testing.     

The effects of a mobile application for patient participation to improve patient safety

BackgroundPatient participation in patient safety activities in care processes is a fundamental element of safer care. Patients play an important role in preventing patient safety incidents and improving health outcomes. Therefore, healthcare providers need to develop and provide educational materials and actionable tools for patient participation.ObjectivesThis study aimed to develop a mobile application for health consumers'' participation and evaluate the effect of the mobile application on improving health consumers'' participation in patient safety.MethodsA quasi‐experimental design was adopted. We developed a mobile application on the basis of a needs assessment, literature review, compilation of patient safety topics, and validity testing of the application. The target population included Korean adults aged between 30 and 65 years who had visited a medical institution more than once within the most recent 6 months. The intervention group received patient participation training by using the mobile application, Application for Patient Participation in Safety Enhancement, for 2 months. The primary outcome variables were patient safety knowledge, self‐efficacy of participation, willingness to participate and experience of patient participation in patient safety activities. End‐user satisfaction was assessed using a questionnaire. To assess participants'' experiences with the intervention, qualitative data were collected through a focus group interview and open‐ended responses to an end‐user satisfaction survey.ResultsThe intervention group (n = 60) had significantly higher overall average scores than the control group (n = 37) with regard to patient safety knowledge (p < .001), self‐efficacy of participation (p = .001), willingness to participate (p = .010) and experience of participation (p = .038) in the post‐survey. The total mean end‐user satisfaction score was 3.56 ± 0.60. The participants expressed the realization that patients could play an important role in improving patient safety.ConclusionsThis study demonstrated that educating health consumers through a mobile application with useful information improves patient participation in patient safety activities. Educational materials and patient participation tools could motivate health consumers'' health‐related behaviours.Patient or Public ContributionPatients were involved during the programme development and evaluation.     

Developing and testing a brief clinic‐based lung cancer screening decision aid for primary care settings

Background

Cancer screening‐related decisions require patients to evaluate complex medical information in short time frames, often with primary care providers (PCPs) they do not know. PCPs play an essential role in facilitating comprehensive shared decision making (SDM).

Objective

To develop and test a decision aid (DA) and SDM strategy for PCPs and high‐risk patients.

Design

The DA was tested with 20 dyads. Each dyad consisted of one PCP and one patient eligible for screening. A prospective, one‐group, mixed‐method study design measured fidelity, patient values, screening intention, acceptability and satisfaction.

Results

Four PCPs and 20 patients were recruited from an urban academic medical centre. Most patients were female (n = 14, 70%), most had completed high school (n = 15, 75%), and their average age was 65 years old. Half were African American. Patients and PCPs rated the DA as helpful, easy to read and use and acceptable in terms of time frame (observed t = 11.6 minutes, SD 2.7). Most patients (n = 16, 80%) indicated their intent to be screened. PCPs recommended screening for most patients (n = 17, 85%).

Conclusions

Evidence supports the value of lung cancer screening with LDCT for select high‐risk patients. Guidelines endorse engaging patients and their PCPs in SDM discussions. Our findings suggest that using a brief, interactive, plain‐language, culturally sensitive, theory‐based DA and SDM strategy is feasible, acceptable and may be essential to effectively translate and sustain the adoption of LDCT screening recommendations into the clinic setting.     

Patient experiences of the urgent cancer referral pathway—Can the NHS do better? Semi‐structured interviews with patients with upper gastrointestinal cancer

BackgroundTimeliness is viewed as a key feature of health‐care quality. Internationally, this is challenging. In England, cancer waiting time targets are currently not being met. For example, between 2015 and 2018 only 71% of patients with upper gastrointestinal (UGI) cancer started treatment within the recommended 62 days of referral.ObjectiveWe explored patients’ experiences to identify areas for service improvement.DesignSemi‐structured interviews were conducted.Setting and participantsTwenty patients who were referred through the urgent (two‐week) GP referral route and were within six months of receiving first treatment were recruited.Data analysisData from the interviews were analysed thematically.ResultsFour themes were developed: organization of care; diagnosis; support; and views and expectations of the NHS. Patients described cross‐cutting issues such as complex and varied pathways and uncertainty about what would happen next. They felt daunted by the intensity and speed of investigations. They were presented with a recommended course of action rather than options and had little involvement in decision making. They were grateful for care, reluctant to complain and resigned to the status quo.Discussion and conclusionsIn order to meet patient needs, the NHS needs to improve communication and streamline pathways. Future cancer pathways also need to be designed to support shared decision making, be truly person‐centred and informed by patient experience.     

Dissonance in the discourse of the duration of diabetes: A mixed methods study of patient perceptions and clinical practice

BackgroundRemission of diabetes can be rewarding for patients and physicians, but there is limited study of how patients perceive the timeline of a disease along the continuum of glycaemic control.ObjectiveTo explore how patients perceive the timeline of diabetes along the continuum of glycaemic control and their goals of care and to identify whether family physicians communicate the principles of regression and remission of diabetes.DesignMixed methods approach of qualitative semi‐structured interviews with purposive sampling followed by cross‐sectional survey of physicians.ParticipantsThirty‐three patients living with prediabetes (preDM) or type 2 diabetes mellitus (T2DM) at medical centres in Georgia and Nevada; and 387 family physicians providing primary care within the same health system.ResultsPatients described two timelines of diabetes: as a lifelong condition or as a condition that can be cured. Patients who perceived a lifelong condition described five treatment goals: reducing glucose‐related laboratory values, losing weight, reducing medication, preventing treatment intensification and avoiding complications. For patients who perceived diabetes as a disease with an end, the goal of care was to achieve normoglycaemia. In response to patient vignettes that described potential cases of remission and regression, 38.2% of physician respondents would still communicate that a patient has preDM and 94.6% would tell the patient that he still had diabetes.ConclusionsMost physicians here exhibited reluctance to communicate remission or regression in patient care. Yet, patients describe two different potential timelines, including a subset who expect their diabetes can be ‘cured’. Physicians should incorporate shared decision making to create a shared mental model of diabetes and its potential outcomes with patients.Patient or Public ContributionIn this mixed methods study, as patients participated in the qualitative phase of this study, we asked patients to tell us what additional questions we should ask in subsequent interviews. Data from this qualitative phase informed the design and interpretation of the quantitative phase with physician participants.     

‘Triadic’ shared decision making in mental health: Experiences and expectations of service users,caregivers and clinicians in Germany

BackgroundShared decision making (SDM) in mental health may contribute to greater patient satisfaction and is sometimes associated with better health outcomes. Here, SDM should not only involve service users and clinicians but also involve the service users'' caregivers.AimThis study aimed to achieve better insight into the current SDM patterns of triads of service users, caregivers and clinicians in inpatient mental health care and the three parties'' expectations towards the prospects of triadic SDM.DesignThe current research uses data from a representative cross‐sectional study on caregivers in psychiatric inpatient treatment. We analysed data on n = 94 triads of service users, their caregivers and their clinicians.ResultsAll three parties acknowledge caregivers to be of great support to monitor the progress with mental disease. The caregiver''s role during consultations is most often described as being an expert, receiving or providing information and supporting service users. However, caregivers at times try to seek support for themselves during caregiver‐clinician interaction, or their behaviour was described as unhelpful. The potential prospects of caregiver involvement are clearly acknowledged despite the low implementation of caregiver involvement in this sample (only in one‐third of the cases).ConclusionTriadic SDM rarely takes place in routine inpatient care. First, there should be a focus on interventions aiming at inviting caregivers to consultations. Only in the second step should a better conceptualisation of triadic SDM be undertaken.Public ContributionEarly results were discussed with a local peer support group for caregivers of individuals living with mental illness.     

Preference‐based patient participation for most,if not all: A cross‐sectional study of patient participation amongst persons with end‐stage kidney disease

BackgroundPatient participation is considered central for good healthcare. Yet, the concept is not fully understood when it comes to patients'' experiences of participation in conjunction with their preferences, particularly in long‐term healthcare. The aim of this study was to investigate the extent and variation of preference‐based patient participation in patients with end‐stage kidney disease (ESKD).MethodsA cross‐sectional study was conducted with 346 patients in renal care. The main variables were patients'' preferences for and experiences of patient participation, determined using the Patient Preferences for Patient Participation tool, the 4Ps. Analyses identified the degree of match between preferences and experiences, that is, the preference‐based patient participation measure.ResultsOverall, 57%–84% of the patients reached a sufficient level of preference‐based patient participation on the items, while 2%–12% reached an insufficient level. A mismatch indicated either less or more participation than preferred; for example, 40% had less experience than preferred for taking part in planning, and 40% had more than preferred for managing treatment.ConclusionThis study shows that, although many patients reach a sufficient level of preference‐based patient participation, this is not the case for all patients and/or attributes. Further opportunities for a mutual understanding of patients'' preferences are needed for healthcare professionals to support person‐centred patient participation.Patient or Public ContributionThe 4Ps is manufactured in collaboration with people with experience of the patient role, and persons living with ESKD were engaged in identifying their preferences and experiences of participation in renal care.     

A qualitative study of nurse‐patient communication and information provision during surgical pre‐admission clinics

BackgroundHealth‐care service users are often being described as ‘co‐producers’ with an active role in their care. However, there are challenges associated with this approach, including how standardization affects personalized care, and the ability of patients to retain high volumes of information.ObjectiveOur study explores patient and nursing perspectives of information provision in the pre‐admission element of an Enhanced Recovery After Surgery programme, an evidence‐based approach implemented to improve the quality of surgical care. Our analysis has been informed by an evidence‐based model developed by Grande et al Patient Educ Couns. 2014;95:281.Design/Setting and participantsThis was a qualitative study including observations of pre‐admission clinics and semi‐structured interviews across three surgical wards. Patients (n = 21) and registered nurses (n = 21) were purposively selected for interviews.ResultsPatients welcomed the opportunity for active involvement in their care. However, we also identified informational boundaries and how illness and treatment‐related anxieties were barriers to patient engagement with the information provided.DiscussionWe recommend that to support a patient‐centred and individualized approach to patient involvement the ‘information (giving) + activation’ element of Grande et al Patient Educ Couns. 2014;95:281 model be reconfigured to allow for ‘information (giving) + exploration +activation’.ConclusionNurses need to feel empowered to adopt strategies that allow for different informational needs, rather than adopting a one‐size‐fits‐all paternalistic approach.Patient contributionThis study focused on patient involvement and we give thanks to all the patients who took part in interviews and those who allowed us to observe their care.     

‘It's not magic’: A qualitative analysis of geriatric physicians' explanations of cardio‐pulmonary resuscitation in hospital admissions

BackgroundDiscussing patient preferences for cardio‐pulmonary resuscitation (CPR) is routine in hospital admission for older people. The way the conversation is conducted plays an important role for patient comprehension and the ethics of decision making.ObjectiveThe objective was to examine how CPR is explained in geriatric rehabilitation hospital admission interviews, focussing on circumstances in which physicians explain CPR and the content of these explanations.MethodWe recorded forty‐three physician‐patient admission interviews taking place in a hospital in French‐speaking Switzerland, during which CPR was discussed. Data were analysed in French with thematic and conversation analysis, and the extracts used for publication were translated into English.ResultsMean patient age was 83.7 years; 53.5% were admitted for rehabilitation after surgery or traumatism. CPR was explained in 53.8% of the conversations. Most explanations were brief and concerned the technical procedures, mentioning only rarely potential outcome. With one exception, medical indication and prognosis of CPR did not feature in these explanations. Explanations occurred either before the patient''s answer (as part of the question about CPR preferences) or after the patient''s answer, generated by patients'' indecision, misunderstanding and by the need to clarify answers.Discussion and conclusionsThe scarcity and simplicity of CPR explanations highlight a reluctance to have in‐depth discussions and reflect the assumption that CPR does not need explaining. Providing patients with accurate information about the outcomes and risks of CPR is incremental for reaching informed decisions and patient‐centred care.Patient contributionPatients were involved in the data collection stage of the study.     

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.     

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.     

Interactional practices in person‐centred care: Conversation analysis of nurse‐patient disagreement during self‐management support

BackgroundPerson‐centred care implies a change in interaction between care professionals and patients where patients are not passive recipients but co‐producers of care. The interactional practices of person‐centred care remain largely unexplored.ObjectiveThis study focuses on the analysis of disagreements, which are described as an important part in the co‐production of knowledge in interaction.DesignA qualitative exploratory study using conversation analysis.Setting and participantsData were collected from a nurse‐led person‐centred intervention in a hospital outpatient setting. Interactions between adult patients with irritable bowel syndrome (n = 17) and a registered nurse were audio‐recorded. COREQ guidelines were applied.ResultsDisagreements were found after demonstration of the nurse''s or patients’ respective professional or personal knowledge. Disagreements were also evident when deciding on strategies for self‐management. Although negotiations between opposing views of the nurse and patient were seen as important, the patient generally claimed final authority both in knowing how IBS is perceived and in the right to choose self‐management strategies. The nurse generally oriented towards patient authority, but instances of demonstration of nurse authority despite patient resistance were also found.Discussion and conclusionsThis study provides information on how co‐production of knowledge and decisions occur in the context of a person‐centred care intervention. Negotiations between nurse and patient views require a flexible approach to communication, adapting interaction to each context while bearing in mind the patients having the final authority. To facilitate co‐production, the patient''s role and responsibilities in interaction should be explicitly stated.