Care decision conversations: Improving communication about treatment wishes and limitations: how to prepare patients and physicians Praten over behandelwensen en –grenzen: Verbeteren van gesprekken over behandelwensen en grenzen: hoe moeten we patiënten en artsen voorbereiden Saskia Pater - Briedé
Care decision conversations: Improving communication about treatment wishes and limitations: how to prepare patients and physicians PhD thesis, Utrecht University, the Netherlands Cover design: Marcel Pater Layout & Printing: Ridderprint | www.ridderprint.nl ISBN: 978-90-393-7708-6 © 2024 by Saskia Pater – Briedé. This thesis is licensed under CC BY-NC 4.0. To view a copy of this license, visit https://creativecommons.org/licenses/bync/4.0/
Care decision conversations: Improving communication about treatment wishes and limitations: how to prepare patients and physicians Praten over behandelwensen en –grenzen: Verbeteren van gesprekken over behandelwensen en grenzen: hoe moeten we patiënten en artsen voorbereiden (met een samenvatting in het Nederlands) Proefschrift ter verkrijging van de graad van doctor aan de Universiteit Utrecht op gezag van de rector magnificus, prof. dr. H.R.B.M. Kummeling, ingevolge het besluit van het College voor Promoties in het openbaar te verdedigen op maandag 30 september 2024 des middags te 2.15 uur door Saskia Pater - Briedé geboren op 29 juni 1990 te Utrecht
Promotor: Prof. dr. H.A.H. Kaasjager Copromotor: Dr. T.C. Van Charldorp Beoordelingscommissie: Prof. dr. J. Frenkel Prof. dr. S.E. Geerlings Prof. dr. M. Huiskes Prof. dr. M.F. van der Schaaf Prof. dr. F.E. Scheepers (voorzitter)
You can’t cross the sea merely by standing and staring at the water. – Rabindranath Tagore Do as much as possible for the patient, and as little as possible to the patient. – Dr. Bernard Lown The secret of the care of the patient is in caring for the patient. – Dr. Francis W. Peabody It is more important to know what sort of person has a disease than to know what sort of disease a person has. – Hippocrates To cure sometimes, to relieve often, to comfort always. – Ambroise Paré Not everything that counts can be counted, and not everything that can be counted counts. – William Bruce Cameron Knowledge is proud that he has learn’d so much; Wisdom is humble that he knows no more. – William Cowper Family is not an important thing. It’s everything. – Michael J. Fox
Table of Contents Chapter 1 General Introduction 9 Part I - Discussing care decisions at the outpatient clinic Chapter 2 The effect of physician training and patient education on the discussion of care decisions at the internal medicine outpatient clinic 25 Chapter 3 Discussing care decisions at the internal medicine outpatient clinic: a conversation analysis 45 Intermezzo 1 67 Part II - Patients perspective on discussing care decisions Chapter 4 A patient’s perspective on care decisions: a qualitative interview study 73 Intermezzo 2 97 Part III - Discussing care decisions at the emergency department Chapter 5 Code status documentation at admission in COVID-19 patients: a descriptive cohort study 103 Chapter 6 Physicians’ training and patient education initiative to improve quality of care decision communication at the emergency department 117 Intermezzo 3 139 Part IV - General discussion and summary Chapter 7 General discussion and summary 145 Appendices Nederlandse samenvatting 170 Dankwoord 180 List of publications 189 About the author 191
CHAPTER 1 General introduction
Chapter 1 10 “Do as much as possible for the patient, and as little as possible to the patient.” - Dr. Bernard Lown Choosing Wisely Healthcare costs rise every year. Discussions on this subject tend to focus on the balance between best individual patient care versus reducing the public healthcare related costs. This balancing suggests that reducing costs goes at the expense of good patient care. But more care is not always better care. Overuse of medical resources is not only a factor in health care spending, but also puts patients at risk of harm (1). It is well known that care can cause unintentional harm, such as radiation exposure, adverse drug reactions, complications or errors during procedures, unnecessary follow-up tests, and patient concern. When the care has (potential) benefit, this can outweigh the (potential) risk of harm. However, when this care is not clinically indicated, no potential benefit is present, leaving only the risks of harm. Estimates suggest that as much as 30% of all health care spending is unnecessary and does not add value in care (2–4). Choosing Wisely is a campaign initiative to reduce potential harm and costs of care. The American Board of Internal Medicine Foundation (ABIM-F) started this campaign in partnership with Consumer Reports to stimulate a conversation between physicians and patients about avoiding wasteful, unnecessary medical tests, treatments, and procedures. The focus is on value of care and potential risks for the patient, rather than using costs as the motivating factor (5,6). Since physicians’ decisions account for about 80% of health care expenditures, they need to play a leading role in reducing unnecessary tests and procedures. The Choosing Wisely campaign is now spread worldwide to more than 20 countries, including the Netherlands since 2013 (6–9). In 2014, the Dutch Association of Internal Medicine (NIV) also committed to create a list of recommendations for internal medicine. Internal medicine is a broad and diverse specialism. In the Netherlands, the NIV has 14 subspecialties, all with their own societies. Despite this diversity, the working group for the development of the Wise Choices in Internal Medicine was able to formulate 10 evidence-based recommendations, with the support of all subspecialty societies and national patient federation. One of these ‘Wise Choices’ was:
General introduction 11 1 “Discuss whether treatment limitations are needed when talking to patients about treatment options” (10). This recommendation was one of the motivations for our research proposal. Care Decisions – Definition – Behandelwensen en -grenzen In the initial phases of this research, we deliberated to articulate an appropriate terminological framework for our objective: the alignment of treatment with the patients’ preferences, desires, goals, and values, inclusive of the potential for opting out of further diagnostic or treatment interventions or put limits to this. This includes, but is not limited to, patient preferences regarding resuscitation, mechanical ventilation, Intensive Care admission (often referred to as the code status) and other possible treatment options such as hospital admission, dialysis, tube feeding, et cetera. During the discussion within the Dutch context, consensus was rapidly reached on the term ‘behandelwensen en -grenzen’ (treatment wishes and boundaries), averting alternatives such as ‘behandelbeperkingen’ (treatment restrictions) or ‘behandelcode’ (treatment code, code status), and ‘Advance Care Planning (ACP)’. This lexical choice was informed by a desire to avoid potential negative connotations associated with restrictions or limitations, address the general population’s unfamiliarity with the meaning of code, and disassociate from the end-of-life implications often linked with advance care planning. The aim was to abstain from using medical jargon, difficult words, and non-native (non-Dutch) terminology in patient communication as much as feasible. Nonetheless, within the dominantly English-language corpus of medicalscientific literature, the term ‘treatment wishes and boundaries’ is notably absent and presents as a neologism derived from Dutch. Although the internationally recognized definition of ACP, as delineated by Rietjens et al., aligns closely with our interpretation of ‘behandelwensen en -grenzen’ (11), ACP is predominantly linked with end-of-life contexts, a bias reinforced by the extensive research in predominantly end-of-life settings (12). To circumvent this association, we have adopted the term ‘care decisions’ across our academic publications and within this thesis. Care decisions are the alignment of treatment with the patients’ desires, goals, and values, inclusive of the potential for opting out of further diagnostic or treatment interventions or put limits to this.
Chapter 1 12 Relevance Certainly, it did not occur unexpectedly that discussing care decisions became one of the ten “Wise Choices” ” (10). Early and proactive conversations regarding care decisions enables the provision of care that is more closely aligned with patient preferences and is associated with reduced consumption of healthcare resources (13). Care decision conversations are crucial to ensure future healthcare decisions are aligned to a patient’s wishes and have shown to reduce length of stay in the intensive care unit (ICU), ICU readmission rates and costs of healthcare, without impacting patient satisfaction (14–16). This raises the question of why these conversations are not conducted more frequently or in a timely manner. Barriers among physicians and patients Presumably care decision conversations are not conducted in a timely manner, because both physicians and patients avoid them due to numerous barriers. In literature, barriers to cardiopulmonary resuscitation (CPR) orders, end-of-life care and ACP in several (end-of-life) settings are identified. It is reasonable to anticipate that these barriers, though with certain subtleties, may also apply to care decision conversations. To have a good overview below are summaries of a) physician barriers to CPR decision-making and implementation, b) patient barriers to CPR decision-making and implementation, c) Physician barriers to end-of-life care and ACP, d) patient barriers to end-of-life care and ACP, and e) system barriers to end-of-life care and ACP. a) Physician barriers to CPR decision-making and implementation (17): ● training and confidence: feeling unskilled or inadequately trained, exhibiting low confidence, inexperience, discomfort, embarrassment, difficulty in making decisions themselves, avoidance of the responsibility of decision-making ● patient factors: poor health status, fear to cause anxiety or distress, fear of harming the patient, fear of complaints and experiences with verbally or physically aggressive relatives, medical uncertainty and perceived resistance from the patient, as physicians often underestimate the number of patients willing to discuss their CPR status
General introduction 13 1 b) Patient barriers to CPR decision-making and implementation (17): ● lack of understanding of CPR and its success rate; although this misunderstanding concerned physicians, they contributed to it as the information provided can vary across disciplines and contains a lot of medical jargon c) Physician barriers to end-of-life care and ACP: ● difficult timing: poor recognition of a proper starting moment for ACP (18), the unpredictability of the prognosis and uncertain transitions toward the end of life (18–20), perceived inappropriateness of the current setting (e.g. inpatient or intensive care) to discuss ACP (18) ● unreadiness on the physicians’ side: not ready to give up an aggressive approach (21,22), reluctance to discuss ACP when not all treatment options are exhausted (20,22), feeling obligated to improve patient’s well-being (21), discomfort (20), avoidance of talking about end-of-life all together (21) ● patient factors: concern ACP conversations lead to anxiety, depression and take away patients’ hope (18,21,22), avoidance to confront the patient with the end-of-life (19), denial on the patients side (19), the (false) beliefs that the patient is not ready to talk about the end of life (21,22), the patient does not know what (s)he wants (21), or the patient does not want treatment limitations (18) ● inadequate training and (communicational) knowledge and education (18–20) ● time constraints (18,20,21) d) Patient barriers to end-of-life care and ACP: ● the assumption that the physician will initiate the discussion when necessary (18,20,22) ● perceived irrelevance (22–27) ○ even in a study in cancer patients with a life expectancy < 12 months, it was experienced as being too early (28) ● lack of education (18,22,27,29), poor medical literacy (18,23) ● emotions: fear of abandonment (18,23), anxiety (20), denial (20,21) ● uncertainty about what choices to make and variability of these choices (21,22) ● the perception the physician does not like to talk about it (21,22) or is too busy (23)
Chapter 1 14 e) System barriers to end-of-life care and ACP: ● life-sustaining care is the default, no (support) systems for end-of-life care (20) ● poor systems for recording patient wishes (20) ● ambiguity about who is responsible (20) As stated before, probably these barriers, though with certain subtleties, also apply to care decision conversations. The avoidance by both parties often leads to the absence of these crucial conversations. To surmount these barriers and make way for fruitful conversations regarding care decisions, both physicians and patients need tailored support. Setting The quality standards of the Dutch association for Internal Medicine demand that a code status is documented in every admitted patient (30). In a code status, it can be documented whether there are limitations to specific life-sustaining treatments or not. When both physicians and patients avoid talking about care decisions (because of the earlier mentioned barriers), these conversations do not take place in time (31). Consequently, the opportunity to adapt treatment to align with patient’s wishes is often missed (32). As a result, care decision conversations often take place at the Emergency Department (ED) in order to document a code status. This seems a far from ideal situation, because at the ED there is limited time and sometimes an acutely ill patient (33,34). Furthermore, in such circumstances, code status (and primarily CPR status) is discussed merely to ‘tick a box’, fulfill a requirement on the admission note and sign out, without giving due consideration to the patient’s goals and values (35). On top of that, in acute settings preexisting physician-patient relationships are rare and there is minimal time to develop familiarity with the patient, their illness and their goals of care (34). Initiating timely conversations regarding care decision can lead to care that is more closely aligned with patient preferences and reduced consumption of healthcare resources (13). The outpatient clinic, often a setting where patients consult a physician with whom they are familiar, appears to be a more appropriate setting to such conversations (36–39). However, the care decisions conversation in the outpatient clinic is often perceived as being too soon by both the patient and the physician (32,34,40). Consequently, these
General introduction 15 1 conversations tend to be deferred until either the end of life, evidenced by research primarily focused on end-of-life settings (12,21,32,41,42), or in the ED during acute situations, where there is limited time for thorough discussion and consideration of the patient’s preferences before a decision is made. COVID-19 Our research project took a turn in the year 2020, when the first patient afflicted with COVID-19 was admitted in the Netherlands. This global health crisis, exerting unprecedented stress upon the healthcare system (43–45), inadvertently influenced the trajectory of our research. On the one hand, conducting scientific research was a lot more complicated, as patient contacts (especially for the purpose of doing research) had to be limited. Also the extremely high workload made physicians more hesitant to participate in research. On the other hand, it provided opportunities, as we experienced from medical practice that the high pressure context influenced the awareness for care decision conversations (46–50). This scenario presented us with an exceptional chance to explore the effects of a global pandemic on code status documentation. The research restrictions at the onset of the pandemic made it difficult to investigate the actual care decision conversations, patient satisfaction or (patient assessed) quality of communication like in our other studies. Therefore we look into code status documentation in this research period. Shared decision-making Over the past decades, patient-centered care and shared decision-making have become the ideal models for physician-patient decision-making (51–53). Within the framework of patient-centered care, physicians are encouraged to partner with patients to co-design and deliver personalized care (54–56). Although shared decision-making is not a central part of this thesis, it is irrevocably connected to care decisions. Throughout the project it became clear that physicians as well as patients need tailored support as part of the broader spectrum of shared decision-making. It is surprising that despite the well acknowledged importance of patientcentered care and shared decision-making, both physicians and patients tend to avoid conversations about care decisions. How can we deliver patientcentered care and make shared decisions, if we do not talk about it?
Chapter 1 16 Multiple perspectives From the start of our research we recognized the value of integrating perspectives. This was enhanced by adding a specialist in communication and linguistics to our medical research team. This enabled us not only to juxtapose patient and physician viewpoints (as both were research subjects in our studies), but to also foster a rich, interdisciplinary dialogue among our team members. This collaborative effort, combining the clinical knowledge of physicians with the language expertise of a communication specialist, often revealed interesting insights when interpreting identical data sets. Additionally, the strong educational background of our team members allowed us to incorporate educational considerations into the development of training and interpretation of results. By merging quantitative with qualitative research methods, such as semi-structured interviews and conversation analysis, this thesis represents the convergence of these diverse viewpoints. Intermezzos In this thesis, we provide three Intermezzos that serve as an intermission in the main parts. In these Intermezzos the physicians’ perspective will be discussed. A student’s final research project provided us various interviews. The insight gained by this small interview study were highly recognizable and connected the results from our other studies. This resulted in Intermezzos like in opera: short and lighter parts that connect the major sections of the work. Objectives of this thesis: This thesis explores how care decision conversations can be improved. Specifically, it examines the effect of physician training and patient education in different settings: the outpatient clinic and emergency department. Besides, it provides insight in how care decision conversations are currently conducted and patients’ and physicians’ perspectives on care decisions. These results together learn us how best to prepare patients and physicians to talk about care decisions.
General introduction 17 1 Outline of this thesis: Part I Part I focusses on care decision conversations at the internal medicine outpatient clinic. In Chapter 2, we investigate the impact of physician training and patient education (both on the topic of care decisions) on patient satisfaction and physician preparedness. Chapter 3 provides a conversation analysis of authentic care decision conversations at the internal medicine outpatient clinic, offering insights into the communicative challenges and strategies employed by physicians and patients. In Intermezzo 1, we show insights in the physicians’ perspective and connect these to the results of Chapter 2 and Chapter 3. Part II In part II we focus on the patient perspective. In Chapter 4 we explore the patient perspective on care decisions through a qualitative interview study, shedding light on patients’ experiences and preferences regarding these conversations. In Intermezzo 2, we show parts of the physicians’ perspective that relate to these topics. Part III In part III, we look into care decision conversations at the emergency department. In Chapter 5, we investigate the impact of the worldwide COVID-19 pandemic on code status documentation upon admission in a descriptive cohort study. Given the research restrictions in the beginning of the pandemic, we utilized available documentation and registration instead of focus on quality and patient satisfaction as we did in our other studies. In Chapter 6 we evaluate a combined approach of physician training and patient education aimed at improving quality of care decision communication at the emergency department. We investigated the effect on patient-assessed quality of care decision communication. Intermezzo 3 shows some final insights from the physicians’ perspective. Part IV In Chapter 7, the final chapter, we will discuss the main findings of our investigations, implications for daily practice, and directions for future research, training and education.
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General introduction 21 1
PART I Discussing care decisions at the outpatient clinic
CHAPTER 2 The effect of physician training and patient education on the discussion of care decisions at the internal medicine outpatient clinic Saskia Briedé, Maria A. de Winter, Tessa C. van Charldorp, Karin A.H. Kaasjager BMC Health Services Research (2022) 22:1569 https://doi.org/10.1186/s12913-022-08901-7
Chapter 2 26 Abstract Background: Care decision discussions are intended to align treatment with the patient’s wishes, goals and values. To overcome the numerous barriers to such discussions, physicians as well as patients need tailored support. We evaluate the effect of a physicians’ training and a conversation aid for patients about care decisions on patient and physician outcomes. Methods: At the internal medicine outpatient clinic of the University Medical Centre Utrecht, a 1:1 randomized, parallel-group study (patient conversation aid) was combined with a pre-post intervention (physicians’ training) design. Primary outcome was patient satisfaction, secondary outcomes were patientdoctor relationship, shared-decision-making, doctor preparedness and patient appreciation of the conversation aid. Results: Between October 2018 and February 2020 11 physicians (36% residents, 73% female) and 185 patients (median age 58 years (interquartile range (IQR) 50-68), 60% male) participated. Only 28% of the patients reported a care decision discussion during the consultation. We found no effect of the interventions on patient satisfaction (effect sizes -0.14 (95% confidence interval (CI) -0.56-0.27) for conversation aid; 0.04 (95% CI -0.40-0.48) for physician’s training), nor on the patient-doctor relationship or shareddecision-making. However, physicians felt more prepared to discuss care decisions after training (median 3 (IQR 1-4) vs 1 (IQR 0-3), p=0.015). Patients assessed the conversation aid informative and gave an overall mark of median 7 (IQR 7-8). Conclusions: First steps towards fruitful discussions about care decisions were made: patients considered the conversation aid informative and physicians felt better prepared to discuss care decisions after training. The low number of care decision conversations patients reported shows exactly how important it is to focus on interventions that facilitate these discussions, for both the patient and physician. Further work needs to be done to establish the best way to empower patients and physicians. Trial registration: Dutch trial register, trial 6998 (NTR 7188), registered 04/05/2018, https://www.trialregister.nl/trial/6998.
2 The effect of training and education at the outpatient clinic 27 1. Background The nationwide ‘Choosing Wisely’ campaign started in the USA in 2012 to engage physicians and patients in conversations about unnecessary tests, treatments and procedures, hereby contributing to appropriate healthcare (1). Following this, the Dutch Association of Internal Medicine published a list of 10 ‘Wise Choices’. One of these ‘Wise Choices’ is to discuss care decisions when talking to patients about their treatment (2). We define care decisions as discussions to align treatment with the patient’s wishes, goals and values, in which the option could also be to waive treatment or further investigation or to put limits to this (e.g. mechanical ventilation, dialysis, tube feeding). This includes for instance code status discussions and advanced care planning (ACP). Although the international consensus definition of ACP as posed by Rietjens et al. corresponds greatly with our vision on care decisions (3), the term ACP is strongly associated with the end of life, mostly due to the extensive research in end-of-life settings (4). To avoid this association, we choose to use the term care decisions throughout this paper. There are numerous barriers for both physicians and patients to discuss care decisions. Barriers for physicians described in literature are for instance: feeling unskilled or inadequately trained; discomfort and fear of complaints (5). On top of that, physicians often wrongfully assume that patients do not want to discuss care decisions (6–8). Patients face other difficulties, such as a lack of knowledge, unawareness of patients of the relevance, and the expectation that physicians will initiate the discussion when needed (4,9). When both parties avoid talking about care decisions, these discussions do not take place in time (10). Consequently, the opportunity to adapt treatment to align with patient’s wishes is often missed (11). Also, this results in situations in which these discussions have to be conducted in far from ideal circumstances, such as in the acute setting at the emergency department with limited time and an acutely ill patient (12). To overcome these barriers and make way for fruitful discussions about care decisions, physicians as well as patients need tailored support. For this study, we aimed to evaluate the effect of a training for physicians and a conversation aid for patients about the topic of care decisions. We measured
Chapter 2 28 patients’ and physicians’ satisfaction during the subsequent consultation at the outpatient clinic. 2. Methods 2.1 Design overview In this study, a randomized, parallel-group study was combined with a prepost intervention design. Participating patients were randomized in a 1:1 ratio. Randomization sequence was created using Castor EDC (electronic data capture) software and was stratified by gender in a 1:1 ratio using random block sizes of 4, 6, and 8. Participating physicians were trained halfway through the study period. This resulted in 4 groups (physicians before training and patients without conversation aid (=reference group), physicians before training and patients with conversation aid, physicians after training and patients without conversation aid, physicians after training and patients with conversation aid (=intervention group) (Figure 1). The required sample size was expected to be reached after 6-9 months, based on average number of outpatient clinic consultations per physician. 42% of eligible patient population could not be reached by phone on multiple occasions and therefore could not be approached. Furthermore, a third of the approached patients refused to participate. Due to the lower-than-expected recruitment rate and the inability to further postpone physicians’ training for logistical reasons, physicians’ training took place 7 months after the first inclusion, before half of the intended sample size was reached. The study was terminated early after 16 months because inclusion was slowing down since an increasing part of the eligible population was already approached. At this moment 80% of the attempted sample size was reached. Besides, due to the low number of actual decisions on care decisions, one of our secondary outcomes (decisional conflict) could not be properly statistically assessed. Instead, we show number of care decision discussions and decisions made. No other changes have been made to the study protocol. This study was performed in line with the principles of the Declaration of Helsinki and approved by the Medical Research Ethics Committee Utrecht (MREC 18-465) and prospectively registered 04/05/2018 at the Dutch trial register (http://www.trialregister.nl, NTR 7188).
2 The effect of training and education at the outpatient clinic 29 2.2 Setting and participants This study was conducted at the internal medicine outpatient clinic of the University Medical Centre Utrecht (UMCU), a tertiary care teaching medical centre in the Netherlands. Physicians Eligible physicians were residents and specialists working at one of the outpatient clinics in our university hospital. Specialties at this outpatient clinic are general internal medicine, endocrinology, diabetes, nephrology, infectious diseases, immunology, vascular disease and gastroenterology. Exclusion criteria were participation in the pilot test of the e-learning module (which was used in the training), and awareness of the purpose of the study (e.g. involvement in an earlier stage or research meeting). Eligible physicians were recruited by the research team and informed that the study was about patient-doctor communication, consultations would be video-taped, and they had to fill out a questionnaire for each participating patient. They were not informed that the focus of this study was the discussion of care decisions. Written informed consent was obtained, after which their schedules were screened for eligible patients. Patients Patients ≥18 years with a scheduled consultation with one of the participating physicians within the study period were eligible for inclusion. The time between scheduling and the actual appointment had to be ≥3 weeks to account for sufficient time for the patient to consider participation and the research team had to be available to obtain written informed consent before the appointment. Visits included routine visits and new patients at the outpatient clinic that were referred by their general practitioner. They visited the outpatient clinic for a variety of indications: renal insufficiency, diabetes mellitus, hypertension, etcetera. Exclusion criteria were insufficient command of the Dutch language (i.e. unable to read and understand the conversation aid and questionnaires), inability to give informed consent and a registered discussion on treatment limitations with their physician within 2 years before the visit. Patients could only participate once.
Chapter 2 30 Patients were contacted by phone by the research team and informed that the study was about patient-doctor communication, half of the participants would receive an online conversation aid and the consultation would be video-taped. They were unaware of the topic of the conversation aid and focus of the study. After verbal informed consent was obtained, participants were randomized. Patients in the control group received an e-mail with the same information as discussed during the phone call, whilst the intervention group received an e-mail with information about the topic of the conversation aid, along with the web link to the conversation aid. Written informed consent was obtained directly before the outpatient clinic consultation by the research team. The outpatient clinic consultations were video recorded for qualitative analyses, of which the results are reported in a separate publication (13). The video camera was visible in the consultation room and both patient and physician were aware of (and consented to) the whole consultation being video recorded. Immediately after the consultation, both the patient and the physician received a separate questionnaire (complete questionnaires in supplementary appendix 1). 2.3 Interventions Physicians’ training The physicians’ training consisted of an e-learning module and a handson training with a simulated patient (i.e. an individual trained to act as a real patient). More detailed information can be found in supplementary appendix 2. After the training, physicians were aware that care decisions were the main focus of the present study. However, physicians were instructed to do their consultations with participating patients similar to those with non-participating patients (i.e. they should not discuss care decisions solely because ‘the camera is on’). Patient education: conversation aid The conversation aid for patients was an online application in which patients could find comprehensible information about why it is important to discuss care decisions, what certain treatments entail and what possible treatment limitations are. Written information was accompanied by visual material. Hyperlinks to additional information were included. The conversation aid was
2 The effect of training and education at the outpatient clinic 31 created in collaboration with the UMCU Patient Panel with special attention for the use of understandable language. Due to the nature of the intervention, patients and physicians could not be blinded to their own intervention. However, both were unaware of each other’s intervention. 2.4 Data collection and outcomes Baseline characteristics Patient characteristics were extracted from the electronic patient records by the research team (age, gender, Charlson Comorbidity Index (CCI) (14)) and collected via the patient-questionnaires (marital status, educational level, work status, health perception, quality of life and social support). Health perception and quality of life were both measured on a 11-points Likert scale (0 to 10).Social support was measured with the Oslo-3-questionairre(15), translated into Dutch using the validated forward-backward method (16,17). Physicians’ characteristics were collected in the physician-questionnaires (age, gender, resident/specialist and years of training or work experience). Outcome measures The primary outcome was patient satisfaction, as a mean of 2 questions of patient satisfaction on a 11-points Likert scale (0 to 10). This scale is a frequently used outcome measure for patient satisfaction in a multitude of settings and interventions (18–21). The two questions on patient satisfaction were: - How satisfied were you with the conversation with your physician at the outpatient clinic? - How satisfied were you with the information given before, during and after your outpatient clinic visit? Secondary outcomes were: - The patient-doctor relationship, evaluated using the Patient Doctor Relationship Questionnaire (PDRQ-9). 9 items are scored on a 5-point Likert scale ranging from 1 (very low quality) to 5 (very high quality). The total score consists of the sum of each of the items and ranges from 9 to 45 (22,23).
Chapter 2 32 - Shared-decision-making, evaluated using the Shared Decision Making Questionaire-9 for physicians (SDM-Q9-DOC). 9 items are scored on a 6-point Likert scale ranging from 0 (totally disagree) to 5 (totally agree). Items are summed and multiplied by 20/9 to provide a score with 0 indicating the lowest and 100 the highest possible level of SDM (24–27). - Doctor preparedness to discuss treatment wishes, evaluated through 8 questions ranging from very generic to care decision specific, and a mock question about medication to mask the focus of this study. - Patient appreciation of the conversation aid (intervention group only), evaluated through 10 questions on aspects of the conversation aid, an overall score, and a free text space for additional suggestions. In summary: for each patient seen by a physician, the physician needed to complete the SDM questionnaire and physician preparedness assessment, combined in one questionnaire. All patients completed the satisfaction items, and the patient-doctor relationship questionnaire. Patients in the patient intervention group additionally completed the questions on their appreciation of the conversation aid. 2.5 Statistical analysis We performed an intention to treat analysis. Patient characteristics are shown stratified by intervention group. Physicians’ characteristics were described narratively. The primary outcome of mean patient satisfaction score was shown stratified by intervention using medians and interquartile ranges. The primary outcome in the intervention group (both patient and physician trained) was first compared to the reference group (neither patient nor physician trained) with a Mann-Whitney U test. Following a gatekeeping procedure to reduce the risk of a type I error, further statistical comparisons between the patient intervention-group and physician intervention-group versus the reference group would have been performed only if the primary outcome differed between the intervention group and the reference group (fixed sequence hierarchical testing). We used the same strategy for the patient-doctor relationship and shared-decision-making outcomes. To adjust for confounders while taking into account dependence between scores of patients within physicians, primary and secondary outcomes were analysed using a multilevel mixed
2 The effect of training and education at the outpatient clinic 33 model. Because patients within a physician might be more similar than patients from other physicians, (e.g. more satisfied, similar diseases) a random intercept for physician was added to the model. We hypothesized that the effect of the physicians training could be different for each physician due to differences in knowledge and experience, therefore we added a random slope for physicians training. Analyses were adjusted for patients’ age, gender, CCI, quality of life, and physicians’ gender and level (resident or specialist) based on previous literature (28–30). An interaction term between patient intervention and physician intervention was added to assess whether the effect of either intervention differed depending on the other intervention. The nonsignificant interaction term indicated that the effects of both interventions were independent. Therefore, the interaction term was subsequently removed from further analyses and, because the sample size calculated for the fixed hierarchical testing was not met, we additionally analysed the data as being a two-by-two factorial design. To evaluate preparedness of the physician, results of physicians’ questionnaires before and after training were compared and tested for statistical significance using Mann-Whitney U test. Patient appreciation of the conversation aid was described narratively. All analyses were performed using IBM SPSS Statistics 25.0.0.2 software. P values <0.05 were considered statistically significant. 2.6 Sample size calculation An a priori sample size calculation for the comparison of the main intervention group (physician trained, patient informed ) and reference group (physician not trained, patient uninformed) on the primary outcome was performed using the statistic program G*Power. In previous studies, patient satisfaction on an 11-point Likert scale (0 to 10) was found to be between 5 and 9, with standard deviations between 1.2 and 3.2 (18–21). Hence, we assumed the mean patient satisfaction score to be 7.0 (reference group) and 8.0 (intervention group) with a standard deviation of 2 (i.e. a Cohen’s effect size 0.5). To achieve a power of >80% with a (one-sided) alpha of 0.05, 51 patients per group were needed. To enable stratified analysis by gender and a loss to follow-up of 10%, the required sample size would be 232 patients.
Chapter 2 34 3. Results 3.1 Study participants Eleven physicians participated in this study, including 4 residents (educational year 3-6) and 7 specialists from different areas of specialization (nephrology, vascular medicine, immunology, endocrinology, gastroenterology). The majority were female (8/11, 73%), responsible for 71% of all consultations in this study. One physician was not able to participate due to lack of time. Between October 2018 and February 2020, a total of 185 patients participated in the study. Figure 1 shows a diagram of the patient-participant flow. The physicians’ training took place when 77 patients were included (33% of the attempted total sample size). Table 1 shows the baseline characteristics of the patients stratified by intervention group. The overall median age was 58 years (IQR 50-68), 60% were men, and the median CCI was 3.0 (IQR 1.0-5.0). A total of nine patients were lost to follow-up. These were equally divided amongst the four groups and the characteristics we had from these patients (age, gender and CCI) were similar to the overall values. 3.2 Patient satisfaction, patient-doctor relationship and shared decision making Table 2 shows the mean patient satisfaction, patient-doctor relationship and shared-decision-making stratified by intervention group. The number of patient-reported care decision discussions during the outpatient clinic visit and in which a decision was made are shown as well. Only 45/161 (28%) patients reported to have discussed care decisions during the outpatient clinic visit, of which 25 (56%) made a decision. After adjusting for patient-related (age, gender, quality of life, CCI) and physician-related (specialist/resident, gender) confounders, no statistically significant association between conversation aid and physician’s training and mean satisfaction score was found (effect sizes -0.14 (95% CI -0.56 to 0.27) for conversation aid; -0.04 (95% CI -0.48 to 0.40) for physician’s training). Similarly, for the secondary outcomes, patient-doctor relationship (effect sizes -0.45 (95% CI -2.85 to 1.95) for conversation aid; 1.28 (95% CI -1.04 to 3.60) for physician’s training) and shared-decision-making (-0.01 (95% CI -5.96 to 5.94) for conversation aid; -0.23 (95% CI -8.89 to 8.42) for physician’s training) no statistically significant association was found
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