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.     

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.     

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.     

How to identify,incorporate and report patient preferences in clinical guidelines: A scoping review

BackgroundClinical guidelines optimize care delivery and outcomes. Guidelines support patient engagement and adherence if they reflect patient preferences for treatment options, risks and benefits. Many guidelines do not address patient preferences. Developers require insight on how to develop such guidelines.ObjectiveTo conduct a scoping review on how to identify, incorporate and report patient preferences in guidelines.SearchWe searched MEDLINE, EMBASE, Scopus, CINAHL, OpenGrey and GreyLit from 2010 to November 2019.EligibilityWe included English language studies describing patient preferences and guidelines.Data extraction and synthesisWe reported approaches for and determinants and impacts of identifying patient preferences using summary statistics and text, and interpreted findings using a conceptual framework of patient engagement in guideline development.ResultsSixteen studies were included: 2 consulted patients and providers about patient engagement approaches, and 14 identified patient preferences (42.9%) or methods for doing so (71.4%). Studies employed single (57.1%) or multiple (42.9%) methods for identifying preferences. Eight (57.1%) incorporated preferences in one aspect of guideline development, while 6 (42.9%) incorporated preferences in multiple ways, most commonly to identify questions, benefits or harms, and generate recommendations. Studies did not address patient engagement in many guideline development steps. Included studies were too few to establish the best approaches for identifying or incorporating preferences. Fewer than half of the studies (7, 43.8%) explored barriers. None examined reporting preferences in guidelines.ConclusionsResearch is needed to establish the single or multiple approaches that result in incorporating and reporting preferences in all guideline development steps.     

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).     

‘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.     

Centredness in health care: A systematic overview of reviews

IntroductionThe introduction of effective, evidence‐based approaches to centredness in health care is hindered by the fact that research results are not easily accessible. This is partly due to the large volume of publications available and because the field is closely linked to and in some ways encompasses adjoining fields of research, for example, shared decision making and narrative medicine. In an attempt to survey the field of centredness in health care, a systematic overview of reviews was conducted with the purpose of illuminating how centredness in health care is presented in current reviews.MethodsSearches for relevant reviews were conducted in the databases PubMed, Scopus, Cinahl, PsychINFO, Web of Science and EMBASE using terms connected to centredness in health care. Filters specific to review studies of all types and for inclusion of only English language results as well as a time frame of January 2017–December 2018, were applied.ResultsThe search strategy identified 3697 unique reviews, of which 31 were included in the study. The synthesis of the results from the 31 reviews identified three interrelated main themes: Attributes of centredness (what centredness is), Translation from theory into practice (how centredness is done) and Evaluation of effects (possible ways of measuring effects of centredness). Three main attributes of centeredness found were: being unique, being heard and shared responsibility. Aspects involved in translating theory into practice were sufficient prerequisites, strategies for action and tools used in safeguarding practice. Further, a variety and breadth of measures of effects were found in the included reviews.ConclusionsOur synthesis demonstrates that current synthesized research literature on centredness in health care is broad, as it focuses both on explorations of the conceptual basis and the practice, as well as measures of effects. This study provides an understanding of the commonalities identified in the reviews on centredness in healthcare overall, ranging from theory to practice and from practice to evaluation.Patient or Public ContributionPatient representatives were involved during the initiation of the project and in decisions about its focus, although no patient or public representatives made direct contributions to the review process.     

The interactive work of narrative elicitation in person‐centred care: Analysis of phone conversations between health care professionals and patients with common mental disorders

IntroductionNarratives play a central part in person‐centred care (PCC) as a communicative means of attending to patients'' experiences. The present study sets out to explore what activities are performed and what challenges participants face in the interactive process of narrative elicitation, carried through in patient‐professional communication in a remote intervention based on PCC.MethodsData were gathered from a randomized controlled trial (RCT) in a Swedish city where health care professionals (HCPs) conducted remote PCC for patients on sick leave due to common mental disorders. A sample of eleven audio‐recorded phone conversations between HCPs and patients enroled in the RCT were collected and subjected to conversation analysis.ResultsThree interactive patterns in narrative elicitation were identified: Completed narrative sequences driven by the patient, question‐driven narrative sequences guided by the HCP, and narrative sequences driven as a collaborative project between the patient and the HCP. In the question‐driven narrative sequences, communication was problematic for both participants and they did not accomplish a narrative. In the other two patterns, narratives were accomplished but through various collaborative processes.ConclusionThis study provides insight into what challenges narrative elicitation may bring in the context of a remote PCC intervention and what interactive work patients and HCP need to engage in. Importantly, it also highlights tensions in the ethics of PCC and its operationalization, if the pursuit of a narrative is not properly balanced against the respect for patients'' integrity and personal preferences. Our findings also show that narrative elicitation may represent an interactive process in PCC in which illness narratives are jointly produced, negotiated and transformed.Patient or Public ContributionStakeholders, including patient representatives, were involved in the design of the main study (the RCT). They have been involved in discussions on research questions and dissemination throughout the study period. They have not been involved in conducting the present study.     

Shared decision making in consultations for hypertension: Qualitative study in general practice

BackgroundHypertension is mainly managed in primary care. Shared decision making is widely recommended as an approach to treatment decision making. However, no studies have investigated; in detail, what happens during primary care consultations for hypertension.AimTo understand patients’ and clinicians’ experience of shared decision making for hypertension in primary care, in order to propose how it might be better supported.DesignLongitudinal qualitative study.SettingFive general practices in south‐west England.MethodInterviews with a purposive sample of patients with hypertension, and with the health‐care practitioners they consulted, along with observations of clinical consultations, for up to 6 appointments. Interviews and consultations were audio‐recorded and observational field notes taken. Data were analysed thematically.ResultsForty‐six interviews and 18 consultations were observed, with 11 patients and nine health‐care practitioners (five GPs, one pharmacist and three nurses). Little shared decision making was described by participants or observed. Often patients’ understanding of their hypertension was limited, and they were not aware there were treatment choices. Consultations provided few opportunities for patients and clinicians to reach a shared understanding of their treatment choices. Opportunities for patients to engage in choices were limited by structured consultations and the distribution of decisions across consultations.ConclusionFor shared decision making to be better supported, consultations need to provide opportunities for patients to learn about their condition, to understand that there are treatment choices, and to discuss these choices with clinicians.Patient or Public ContributionA patient group contributed to the design of this study.     

A national research centre for the evaluation and implementation of person‐centred care: Content from the first interventional studies

BackgroundPerson‐centred care (PCC) has been suggested as a potential means to improve the care of patients with chronic and long‐term disorders. In this regard, a model for PCC was developed by the University of Gothenburg Centre for Person‐Centred Care (GPCC).ObjectiveThe present study aimed to explore the theoretical frameworks, designs, contexts and intervention characteristics in the first 27 interventional studies conducted based on the ethics for person‐centredness provided by the GPCC.DesignCross‐sectional study.Setting and participantsA questionnaire to the principal investigators of the 27 intervention studies financed by the GPCC and conducted between 2010 and 2016.Main outcome measuresTheoretical frameworks, contexts of studies, person‐centred ethic, and outcome measures.ResultsMost of the interventions were based on the same ethical assumptions for person‐centredness but theories and models in applying the interventions differed. All studies were controlled; 12 randomized and 15 quasi‐experimental. Hospital in‐ and outpatient and primary care settings were represented and the outcome measures were related to the specific theories used. A complexity in designing, introducing and evaluating PCC interventions was evident.ConclusionThe frameworks, designs and interventions in the studies were in line with the established ethical basis of PCC, whereas outcome measures varied widely. Consensus discussions among researchers in the field are needed to make comparisons between studies feasible.Patient or public contributionsPatients or the public made no direct contributions, although most of the studied projects included such initiatives.     

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.     

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.     

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.     

Shared decision‐making behaviours in health professionals: a systematic review of studies based on the Theory of Planned Behaviour

Background

Shared decision making (SDM) requires health professionals to change their practice. Socio‐cognitive theories, such as the Theory of Planned Behaviour (TPB), provide the needed theoretical underpinnings for designing behaviour change interventions.

Objective

We systematically reviewed studies that used the TPB to assess SDM behaviours in health professionals to explore how theory is being used to explain influences on SDM intentions and/or behaviours, and which construct is identified as most influential.

Search strategy

We searched PsycINFO, MEDLINE, EMBASE, CINAHL, Index to theses, Proquest dissertations and Current Contents for all years up to April 2012.

Inclusion criteria

We included all studies in French or English that used the TPB and related socio‐cognitive theories to assess SDM behavioural intentions or behaviours in health professionals. We used Makoul & Clayman''s integrative SDM model to identify SDM behaviours.

Data extraction and synthesis

We extracted study characteristics, nature of the socio‐cognitive theory, SDM behaviour, and theory‐based determinants of the SDM behavioural intention or behaviour. We computed simple frequency counts.

Main results

Of 12 388 titles, we assessed 136 full‐text articles for eligibility. We kept 20 eligible studies, all published in English between 1996 and 2012. Studies were conducted in Canada (n = 8), the USA (n = 6), the Netherlands (n = 3), the United Kingdom (n = 2) and Australia (n = 1). The determinant most frequently and significantly associated with intention was the subjective norm (n = 15/21 analyses).

Discussion

There was great variance in the way socio‐cognitive theories predicted SDM intention and/or behaviour, but frequency of significance indicated that subjective norm was most influential.     

Shared decision making in oncology: assessing oncologist behaviour in consultations in which adjuvant therapy is considered after primary surgical treatment

Introduction Shared decision making (SDM) is now considered a desirable goal in health care, yet little is known about current practice in cancer care, and its impact on patient outcomes. This study aimed to develop an oncology‐specific coding system for SDM, explore variations in SDM according to patient and disease characteristics, determine the relationship between SDM and patient satisfaction with the consultation, and explore the impact of SDM on patient anxiety. Methods Sixty‐three medical and radiation oncology consultations with patients with primary cancer involving consideration of adjuvant therapy after surgery were audio‐taped, transcribed and coded. Intra and inter‐rater reliability of the coding system was 95 and 90% respectively. Patients completed questionnaires before and after the consultation. Results Construct validity of the SDM coding system was successfully conducted. Oncologists demonstrated on average under 11 of 18 SDM behaviours. Behaviours seeking patient preferences were particularly rare. SDM behaviours were more apparent in consultations involving female breast cancer patients. SDM behaviour scores in combination with patient involvement preference could predict achievement of patient involvement preference but not overall patient satisfaction. Although there was no overall relationship between patient anxiety and SDM scores, it did appear that physicians may change SDM behaviour according to patient factors including anxiety. Conclusion Our findings reinforce the importance of the doctor in facilitating shared decision making in oncology consultations.