Comparison of the sustainability of the impact of team-based versus individual clinician-focused training of primary care professionals in serious illness conversations on caregiver burden of care: a secondary analysis of a cluster randomized trial

Comparison of the sustainability of the impact of team-based versus individual clinician-focused training of primary care professionals in serious illness conversations on caregiver burden of care: a secondary analysis of a cluster randomized trial | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Comparison of the sustainability of the impact of team-based versus individual clinician-focused training of primary care professionals in serious illness conversations on caregiver burden of care: a secondary analysis of a cluster randomized trial Kouessiba Lorielle Lokossou, Odilon Quentin Assan, Souleymane Gadio, and 11 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-5327522/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 21 Oct, 2025 Read the published version in BMC Geriatrics → Version 1 posted 4 You are reading this latest preprint version Abstract Background: Training health professionals in serious illness conversations is important for patients with serious illnesses and for their caregivers. However, most training focuses on individual clinicians rather than on healthcare teams. We aimed to compare the sustainability of the impact of a team-based training program in serious illness conversations with that of an individual clinician-focused training program on the burden of care of caregivers of patients with serious illnesses. Methods: We performed a secondary analysis of caregivers’ data from a preliminary cluster randomized trial in the USA and Canada in which 42 primary care clinics were randomized to an interprofessional team-based training arm (intervention) or an individual clinician-focused training arm (control). Seriously ill patients who had had a serious illness conversation with the trained clinicians were asked to refer a caregiver. We used the Zarit Burden Interview (range: 0-48) to assess caregiver burden immediately after the serious illness conversation (T1), six months later (T2) and 12 months later (T3). Statistical analysis using a linear mixed model were performed to compare caregiver burden between the two arms at the three times. Results : We included 192 caregivers from 42 primary care clinics. Most were female (67.8%); aged 65-74 (28.6%). The mean caregiver burden scores were low, and similar in both the arms at the three times. The difference in mean burden between the two study arms was 1.05 (95% CI -1.47 to 3.59; p=0.40), -0.24 (95% CI -2.57 to 2.08; p=0.82), and 0.09 (95% CI -2.61 to 2.81; p=0.94) at T1, T2 and T3 respectively. The p-value of the interaction term between study arm and time was p=0.47. Mean difference between arms after performing a model with time effect and after adjusting was 0.90 (95% CI -0.76 to 2.57; p=0.28). Various other factors such as caregivers feeling anxious or depressedwere associated with caregiver burden. Conclusion: Analysis showed that there was no difference between perceived caregiver burden after the interprofessional team-based training approach and after the individual clinician-focused training approach. Our study did however underline the importance of recognizing other factors influencing caregiver well-being. Trial registration : ClinicalTrials.gov (ID: NCT03577002). Health care professional training family caregivers caregiver burden advance care planning Zarit burden interview serious illness conversations Figures Figure 1 Figure 2 Background According to a 2019 United Nations report, the number of people aged 65 and over is expected to double by 2050, accounting for 16% of the world population (1). Many older people live with serious or chronic illnesses, often leading to partial or total loss of autonomy. Caregivers play an increasingly important role in their care and decision-making (2). Often, in their frequent interactions with the healthcare system, patients with serious illnesses may undergo aggressive tests and unwanted treatments that can be invasive or painful and do not always align with their wishes (3, 4). Advance Care Planning (ACP) is a dialogue between the patient, healthcare professional(s) and their caregivers that allows patients to express their goals and values regarding potential future care in the event of decision-making incapacity (5). ACP leads to an improvement in the quality of life, a better mood, a reduction in the use of non-beneficial medical care at the end of life, lower expenditures, sustainment of goal-concordant care, and positive outcomes for the family (6, 7). Primary care is recognized as the ideal setting for conducting ACP as primary care professionals have more frequent interactions and a longitudinal relationship with their patients (7). “Serious illness conversations” is a broad term that applies to both “in-the-moment” shared medical decision making—commonly referred to as “goals of care” conversations—and the traditional ACP conversations intended to help patients prepare for the future. The goal of serious illness conversations is to help patients explore the future more generally without focusing only on specific treatment options. Unlike with ACP, with serious illness conversations the patient has already been diagnosed with a serious illness and a clinician is involved in the conversation (8). However, despite their willingness to engage in serious illness conversations, primary care professionals report that they often lack sufficient time and training (9, 10). The Serious Illness Care Program (SICP) is a systematic care delivery model created by a team of palliative care experts that aims to enable healthcare professionals to better initiate and lead serious illness conversations (11). The program uses the Serious Illness Conversation Guide (11). The SICP has been extended to primary care settings, showing evidence of acceptance and benefits (12). Its primary goal is to allow more frequent, in-depth, and early conversations between clinicians and seriously ill patients, centered around their goals, values, and priorities, with the aim of positively influencing future care (13). The SICP aims to make awareness and respect for patients' priorities the norm rather than the exception (13). The SICP training was originally developed with an individual clinician-focused approach, but an interprofessional team-based approach was also developed, as it has been shown that an interprofessional approach may facilitate serious illness conversations by reducing the time commitment required from clinicians (5). However, patients and primary care professionals are not the only people involved in end-of-life care. Caregivers play an increasingly important role in patient care and decision-making of patients with serious illnesses (2). Tasks related to that role might be a source of burden for the caregivers (14). Although it has been documented that training primary care professionals to improve health practices has a positive impact on the burden of care of caregivers (15, 16), we do not have a clear picture of the impact of an interprofessional team-based versus an individual clinician-focused approach to training them in serious illness conversations on the burden of care of caregivers. Therefore, based on a previous study that showed that interprofessional team-based healthcare improves overall patient and family caregiver health (17), and the fact that serious illness conversations could be facilitated by a team-based approach, we hypothesized that an interprofessional team-based approach would have better impact on caregiver burden than an individual clinician-focused approach. One way to assess the sustainability of the impact of continuing professional development among primary care professionals is to evaluate their impact over time (18). Our study therefore aimed to compare the sustainability of the impact of primary care professionals' training using the two approaches (individual vs. interprofessional) to serious illness conversations on the caregivers’ burden of care of patients with serious illnesses. Methods Study design and setting We performed a secondary analysis of a multicenter, parallel-group cluster randomized trial comparing team-based to individual clinician-focused implementation of the SICP training in primary care (19) with post-intervention measures immediately after the intervention, 6 months and 12 months later. The parent study’s primary outcomes were patient-reported goal-concordant care and days at home. The trial was registered in ClinicalTrials.gov: NCT03577002 and its protocol is published (19). The study took place from January 2018 to August 2022 in primary care clinics located in five states in the United States (Colorado, Iowa, North Carolina, Oregon, Wisconsin) and two provinces in Canada (Quebec and Ontario). Results of our secondary analysis are reported according to the CONSERVE 2021 statement for cluster randomized trials conducted during the COVID-19 pandemic (20). Recruitment and participants Primary care clinics (clusters) were recruited from seven Practice-Based Research Networks (PBRN) in five USA states and two Canadian provinces under the supervision of the joint coordinating center at Oregon Health & Science University and Université Laval, Quebec. The primary care clinics were provided with information about the study. To be eligible to participate, primary care clinics had to: (1) be able to provide at least 30 participants; (2) accept to be randomized into either study arms; (3) have sufficient interprofessional staff to participate in the interprofessional team-based arm, including medical assistants, nurses, social workers, and community health workers; (4) be untrained in any other standardized ACP program. Caregivers were the targeted participants of our study. After the first serious illness conversation with their primary care professional post-training, patients with serious illnesses were invited by their primary care professional to participate in the study. Once the patient gave consent, they were asked about their preference to include a caregiver, friend, or family member involved in their healthcare in the study. Patients provided the research team with the names and contact details of potential caregivers. Subsequently, a member from the research team contacted the potential caregivers to invite them to participate. Randomization The unit of randomization was the primary care clinic. They were randomly assigned to either the interprofessional arm or the individual arm. A random number generator was used by a biostatistician who had no contact with the primary care clinics or PBRNs and who remained blinded until the completion of the primary analyses. Personnel at the PBRNs, primary care clinics, and the joint coordinating center were not involved in randomization. However, investigators, PBRN leadership, primary care clinics, and research staff were not blinded to the assignment. Primary care clinics and participating primary care professionals could not be blinded to their assigned study arm as they needed to actively undergo training, i.e., implement either the intervention or the control. Further details regarding the randomization process are available elsewhere (19). Intervention and comparator arms We adapted the original Ariadne Labs SICP to create an abbreviated version for this trial. We then developed a new interprofessional training approach (21). Both training approaches lasted three hours: a 1.5-hour online module (Part A), and a 1.5-hour in-person role-play session (Part B). Training materials included the serious illness conversation guide, a tool designed by Ariadne Labs to facilitate communication with patients with serious illnesses (22). Original Serious Illness Care Program The original SICP is a multicomponent, structured communication intervention designed to (1) identify patients with serious illnesses; (2) train clinicians to use the serious illness conversation guide to structure serious illness conversation with patients; (3) ‘trigger’ clinicians to have conversations using the guide with enrolled patients; (4) prepare patients for the conversation by providing them with a letter encouraging them to think about some of the topics raised in the guide; (5) guide clinicians in conducting values and goals conversations; (6) document outcomes of the discussion in a structured format in the electronic medical record and (7) provide patients with a Family Communication Guide to help them continue the discussion at home with their loved ones (11). Intervention arm: interprofessional team-based approach Our new training was based on the interprofessional shared decision-making model and previous workshops (23, 24). Our new team-based approach focused on maximizing the expertise and efficient use of time of each team member to facilitate serious illness conversations. In this approach, the steps are the same as those in individual training, but the tasks are shared among different primary care professionals in the team. Teams consist of primary care clinicians and one or more additional persons from a different professions or practice roles (e.g., nurses, care managers, social workers, medical assistants, chaplains, peer counselors, community health workers). Emphasis was placed on the following aspects: (a) establishing a common understanding of the process and goals of care related to serious illnesses among team members; (b) recognizing the contributions of each team member; (c) maintaining continuous communication within the team; and (d) acknowledging organizational or functional constraints specific to each profession. More details on the development of the team-based training approach are published elsewhere (21). Control arm: individual clinician-focused approach The individual clinician-focused approach assumed that serious illness conversations would take place with a single primary care clinician (i.e. physicians, nurse practitioners, physician assistants or residents) who identifies the appropriate patients, leads the serious illness conversations and documents their discussions in the patient’s medical record. Outcomes and measures Primary outcome and measure We measured caregiver burden as the primary outcome. Caregiver burden refers to the emotional, financial and physical difficulties and burdens faced by family caregivers when caring for someone with serious or chronic illnesses or with loss of autonomy (25). We assessed caregiver burden using the brief version of the Zarit Burden Interview (ZBI) (26). It is a 12-item self-administered questionnaire frequently used to assess the impact of caregiving on caregivers’ quality of life. Secondary outcomes and measures We also assessed the overall health of caregivers using the Patient-Reported Outcomes Measurement Information System (PROMIS-29), a psychometrically instrument developed to reflect how patients conceptualize important symptoms and functions (27). The instrument includes four items from each of the seven PROMIS domains (anxiety, depression, fatigue, pain interference, physical functioning, sleep disturbance, and ability to participate in social roles), as well as an additional pain intensity item (28). Caregivers’ experience with SICP and healthcare utilization by the patient were also assessed. We adapted the Pallet framework (29) to assess the association between caregiver burden and the other factors such as caregivers’ experience with SICP and healthcare utilization by patients as perceived by the caregivers. Data collection Primary care professionals were trained. Caregiver data were collected after a serious illness conversation between the patient and the primary care professionals. After the caregivers provided informed consent, they completed a self-reported questionnaire. Caregivers completed questionnaires immediately after the serious illness conversation, and then 6 months and 12 months later. Sample size Since this was a secondary analysis of a primary study, there was no a priori sample size calculated for this substudy focused on caregivers. Patients were asked to identify their caregivers. Information on the primary study sampling strategy is reported in the published study protocol (19). Sample size estimates were based on expected differences between patient-reported goal-concordant care, days at home and estimates of within-cluster correlations. Data analysis We performed descriptive analysis for all variables. Categorical variables were described using absolute and relative frequencies (numbers, percentages). Continuous variables were described using central tendency measures (means, medians) and measures of dispersion (standard deviations, minimum and maximum). The caregiver burden was treated as a continuous variable. The total ZBI score, that is the sum of the scores obtained for each item, ranges from 0 (no burden) to 48 (severe burden). Total ZBI score can indicate little or no burden (between 0 and 10); moderate burden (above 10 and lower than 20) or severe burden (above 20) (22, 23). Since the caregiver burden did not follow a normal distribution, we performed a linear mixed model to analyze it (30). To account for clustering, we used the practice identifier as a random factor when fitting the models. The PROMIS-29 generates T-scores which are standard scores with a mean of 50 and standard deviation of 10 in a reference population (27). We performed bivariate analysis through a linear mixed model for each variable of interest to analyze its effect on caregiver burden. We then selected all statistically significant variables (p < 0.20) from the bivariate analysis to perform a multivariate model through a linear mixed model. We then performed a manual stepwise backward selection based on the variable significance (p < 0.05) in the final adjusted model. To compare the sustainability of the training effect on caregivers, we determined the p-value of the interaction term between study arm and time. All analyses were performed using Statistical Analysis Software (SAS) 9.4. Results Characteristics of primary care clinics and caregivers A total of 45 primary care clinics were recruited and randomized into both study arms. Forty primary care clinics were trained, 19 using the individual clinician-focused approach and 21 using the interprofessional team-based approach. Thirty-eight primary care clinics, 19 in each arm, referred patients and caregivers (Fig. 1 ). Characteristics of randomized primary care clinics are illustrated in Table 1 . A total of 192 caregivers (110 in the interprofessional arm, 82 in the individual arm) consented to participate and 171 caregivers (89.06%) completed the ZBI at T1, 144 (75.00%) at T2 and 130 (67.71%) at T3. Most caregivers were female (67.8%), Caucasians (80.2%), aged from 65 to 74 years old (28.6%), had completed at least college or a two-year degree (32.4%), and lived with the patient (63%). Most caregivers were the patient’s spouse (51.6%) (Table 2 ). Table 1 Characteristics of participating primary care clinics. Practices Clinician (n, %) Interprofessional (n, %) Total (n, %) Number of practices 22 (100) 23 (100) 45 (100) Country United States 16 (72.7) 17 (73.9) 33 (73.3) Canada 6 (27.3) 6 (26.1) 12 (26.7) Size (of Primary Care Clinicians) Small (2–5) 2 (9.0) 6 (26.1) 8 (17.8) Medium (6–12) 10 (45.5) 9 (39.1) 19 (45.2) Large (13–85) 10 (45.5) 8 (34.8) 18 (40.0) Geographic setting Rural 8 (36.4) 12 (52.2) 20 (44.4) Suburban 5 (22.7) 3 (13.0) 8 (17.8) Urban 9 (40.9) 8 (34.8) 17 (37.8) Ownership Hospital/health system 18 (81.8) 13 (56.6) 31 (68.9) Physician or physician group 4 (18.2) 7 (30.4) 11 (24.4) Federally Qualified Health Center 0 (0.0) 3 (13.0) 3 (6.7) Specialty Family medicine 19 (82.6) 15 (68.2) 34 (75.5) Internal medicine 3 (13.0) 5 (22.7) 8 (17.8) Both Family and internal medicine 1 (4.4) 2 (9.1) 3 (6.7) Size of Primary Care Clinics, median (min-max) 12 (3 to 40) 8 (4 to 46) 10 (3 to 46) Table 2 Caregivers characteristics Arm Individual Interprofessional Total n Clusters 19 19 38 n Caregivers 82 110 192 Country, n (%) United-States 61 (74.4) 62 (56.4) 123 (64.1) Canada 21 (25.6) 48 (43.6) 69 (35.9) Age, n (%) 25–34 - 1 (0.9) 1 (0.5) 35–44 2 (2.4) 4 (3.6) 6 (3.2) 45–54 10 (12.2) 8 (7.3) 18 (9.3) 55–64 18 (21.9) 30 (27.3) 48 (25.1) 65–74 21 (25.6) 34 (30.9) 55 (28.6) 75 or older 19 (23.3) 24 (21.8) 43 (22.4) Missing 12 (14.6) 9 (8.2) 21 (10.9) Sex, n (%) Male 16 (19.6) 25 (22.3) 41 (21.3) Female 54 (65.8) 76 (69.6) 130 (67.8) Missing 12 (14.6) 9 (8.1) 21 (10.9) Race, n (%) Caucasians 64 (78.0) 90 (81.8) 154 (80.2) Black or African American 3 (3.8) 4 (3.6) 7 (3.6) Asian 2 (2.5) 3 (2.7) 5 (2.6) Middle Eastern - 1 (0.9) 1 (0.5) Mixed race 1 (1.2) 1 (0.9) 2 (1.2) Other race - 1 (0.91) 1 (0.52) Missings 12 (14.5) 11 (10.1) 23 (11.9) Relationship with patients, n (%) Spouse 44 (53.7) 55 (50.0) 99 (51.6) Ex-spouse 1 (1.2) - 1 (0.5) Parent 1 (1.2) 2 (1.8) 3 (1.6) Friend - 3 (2.8) 3 (1.6) Daughter 20 (24.4) 35 (31.8) 55 (28.7) Son 5 (6.1) 6 (5.5) 11 (5.7) Partner - 1 (0.9) 1 (0.5) Sibling 3 (3.7) 1 (0.9) 4 (2.0) Significant other 1 (1.2) - 1 (0.5) Other relative 2 (2.4) 2 (1.8) 4 (2.0) Other 2 (2.4) 2 (1.8) 4 (2.0) Missing 3 (3.7) 3 (2.7) 6 (3.3) Education, n (%) Grade 8 or less 1 (1.2) 4 (3.6) 5 (2.6) Some high school. but did not graduate 2 (2.4) 13 (11.8) 15 (7.8) High school graduate or GED 20 (24.4) 21 (19.1) 41 (21.4) Some college or 2-year degree 26 (31.7) 36 (32.7) 62 (32.4) 4-year college graduate 10 (12.3) 15 (13.6) 25 (13.0) More than 4-year college degree 11 (13.4) 12 (10.9) 23 (11.9) Missing 12 (14.6) 9 (8.3) 21 (10.9)) Patient’s maincondition n (%) Cancer 15 (18.3) 22 (20.1) 37 (19.3) Cardiovascular 10 (12.2) 26 (23.6) 36 (18.8) Lung disease 5 (6.1) 3 (2.7) 8 (4.1) Diabetes and kidney problems 4 (4.9) 5 (4.6) 9 (4.7) Ulcer/stomach/liver/gastrointestinal problems 1 (1.2) 2 (1.8) 3 (1.6) Blood disease - 1 (0.9) 1 (0.5) Depression and anxiety 2 (2.4) 2 (1.8) 4 (2.1) Musculoskeletal 1 (1.2) 1 (0.9) 2 (1.0) Neurological 3 (3.7) 3 (2.7) 6 (3.1) Immune/auto immune 5 (6.1) 3 (2.7) 8 (4.2) Functional problems 6 (7.3) 11 (10.0) 17 (8.8) Multiple systems (not cancer) 2 (2.4) 3 (2.7) 5 (2.6) Missing 28 (34.2) 28 (25.5) 56 (29.2) Cohabitation, n (%) No 23 (28.1) 29 (26.4) 52 (27.1) Yes 48 (58.5) 73 (66.4) 121 (63.0) Missings 11 (13.4) 8 (7.2) 19 (9.9) Caregiver burden The caregiver burden mean score (standard deviation (SD)) was 11.3/48 (8.5) (n = 101) in the interprofessional arm at T1; 9.1/48 (6.8) (n = 80) at T2 and 9.9/48 (8.3) (n = 74) at T3. The mean score (SD) was 10.8/48 (9.0) (n = 70); in the individual arm at T1; 10.1/48 (8.2) (n = 64) at T2 and 9.2/48 (8.0) (n = 56) at T3, respectively (Table 3 ). Table 3 Distribution of caregiver burden of care Individual Interprofessional Total N Mean (SD) N Mean (SD) N Mean (SD) Burden of care score T1 70 10.8 (9.0) 101 11.3 (8.5) 171 11.1 (8.7) Burden of care score T2 64 10.1 (8.2) 80 9.1 (6.8) 144 9.5 (7.4) Burden of care score T3 56 9.2 (8.0) 74 9.9 (8.3) 130 9.6 (7.9) SD: standard deviation T1: after the serious illness conversation; T2: 6 months after the serious illness conversation; T3: 12 months after the serious illness conversation The difference in mean burden between the two study arms was 1.05 (95% CI -1.47 to 3.59; p = 0.40), -0.24 (95% CI -2.57 to 2.08; p = 0.82), and 0.09 (95% CI -2.61 to 2.81; p = 0.94) at T1, T2 and T3 respectively. We adjusted for caregiver’s overall health, caregiver’s mental or emotional health, anxiety, patient spending any night in a nursing home or rehab in the past 6 months and caregiver’s social life at T1, caregiver’s mental or emotional health and caregiver’s social life and caregiver’s ethnicity at T2, and at T3, caregiver’s mental or emotional health and patient having received palliative care in the past 6 months (Table 4 ). The p-value of the interaction term between study arm and time was p = 0.47 (information not shown). Table 4 Mean difference of burden of care at each time point Burden of care (difference in means) Unadjusted model Adjusted model * Estimate CI 95% p value Estimate CI 95% p value (N = 171) (N = 162) T1 0.78 − 2.63; 4.19 0.64 1.05 − 1.47; 3.59 0.40 (N = 144) (N = 137) T2 − 0.98 − 3.53; 1.57 0.43 − 0.24 − 2.57; 2.08 0.82 (N = 130) (N = 122) T3 0.75 − 2.13; 3.63 0.59 0.09 − 2.61; 2.81 0.94 95%CI: confidence interval at 95% Significance threshold (P < 0.05) Mixed linear regression test T1: after the serious illness conversation; T2: 6 months after the serious illness conversation; T3: 12 months after the serious illness conversation *Adjusted for Caregiver’s overall health, caregiver’s mental or emotional health, anxiety, patient spending any night in nursing home/rehab in past 6 months and caregiver’s social life at T1, caregiver’s mental or emotional health and caregiver’s social life at T2, and at T3, caregiver’s mental or emotional health and patient having palliative care in past 6 months. Since the interaction term between the study arm and time was not statistically significant, we performed a model with time effect (the variables from the three time points were combined into a single time point). The mean difference between study arms was then − 0.16 (95% CI: -2.32 to 2.00; p = 0.88). After adjusting for caregivers’ overall mental or emotional health, anxiety, depression, social roles, and the patient’s use of an emergency department in the past 6 months, the mean difference between arms was 0.90 (95% CI: -0.76 to 2.57; p = 0.28). There were no statistically significant differences in the perceived level of caregiver burden between the two arms (p = 0.28) (Table 5 ). Table 5 Final model with time effect Burden of care (Means differences) Unadjusted model Adjusted model * Estimate CI 95% P-value Estimate CI 95% P-value -0.16 -2.17; 2.19 0.88 0,90 − 0.79; 2.49 0.28 95%CI: confidence interval at 95% Significance threshold (P < 0.05) Mixed linear regression test *Adjusted for caregivers’ overall mental or emotional health, anxiety, depression, social roles, and the patient’s use of an emergency department in the past 6 months. Other factors associated with caregiver burden Factors associated with higher caregiver burden were as follows: any visit to the emergency department in the past 6 months increased caregiver burden by 1.35 points (p = 0.01); caregiver feeling anxious increased caregiver burden by 0.14 points (p = 0.0005) and caregiver feeling depressed increased caregiver burden by 0.18 points (p < .0001). Factors associated with lower burden included the following: optimal caregiver overall mental health decreased caregiver burden by 1.45 points (p = 0.0001) and having an active social life decreased caregiver burden by 0.20 points (p < .0001). Discussion Our study compared the sustainability of the impact of two SICP primary care professional training approaches (individual and interprofessional) to serious illness conversations on burden of care of caregivers of patients with serious illnesses. We measured the burden of care after a serious illness conversation, and then 6 months and 12 months later. We found that the impact of SICP training on the caregivers’ burden of care did not change from T1 to T3 in either arm (i.e., no changes after 6 and 12 months). The level of burden perceived by caregivers did not depend on the time that had elapsed since the serious illness conversation. We also found that there was no significant difference between the caregiver burden observed in the interprofessional arm and the individual arm. After adjusting for caregiver’s overall mental and emotional health, anxiety, depression, social roles, and patient’s use of the emergency department in the past 6 months, the difference remained statistically insignificant. Finally, we observed that the caregiver burden was associated with five variables, namely the caregiver’s overall mental and emotional health, anxiety, depression, social roles, and the patient’s use of the emergency department in the past 6 months. These results lead us to make the following observations. First, the caregiver burden was low and similar in both interprofessional and individual arms at all time points. These results were not statistically significant. While we expected a reduction in caregiver burden over time, the caregiver burden did not diminish significantly. This could be because the health of patients who need serious illness conversations is deteriorating, and while serious illness conversations might alleviate caregiver burden from the point of view of decisions about care, their burden may increase for other reasons related to their loved one’s approaching death (31). Studies show that often, caregivers do not look after themselves particularly well; they do not eat properly, often cease activities outside of the home and postpone their own medical appointments (32). Also, the COVID-19 pandemic could have impacted caregiver burden at T2 (6 months) and T3 (12 months) because during the pandemic, serious illness conversations were not a priority (33). During the most intense period of the pandemic, some hospitals stopped offering non-emergency services such as serious illness conversation services to minimize the spread of COVID-19 (33). Second, we did not find any statistically significant difference between the level of burden observed in each arm. We can explain our results by the fact that there is considerable variation in primary care clinics and systems across countries, states, and provinces concerning the responsibility for initiating discussions about serious illnesses. Clinicians are usually the ones who initiate serious illness conversations and healthcare staff generally think that it is the doctor’s responsibility to initiate these conversations (34). Indeed, the other healthcare workers usually lack experience with serious illness conversations (35). The team members in the interprofessional team-based arm may therefore not have felt they had an ethical obligation or requirement according to the professional norms within their practice or healthcare set up to engage in such discussions. In both arms of the study, therefore, conversations were more likely to have been led by clinicians, and thus the impact on patients and therefore on their caregivers would have been the same. The lack of impact on caregivers of the training could also be explained by the fact that there was little emphasis on caregivers in the intervention itself, whereas caregivers are often involved in decisions about end of life and need to be closely involved in such discussions, as confirmed by numerous studies (36). Our results suggest that there should be more emphasis on caregivers in both training programs and even a separate module on accompanying caregivers through the serious illnesses of their loved ones. This specific role could be added to the tasks surrounding serious illness conversations that interprofessional teams undertake. Third, as secondary outcomes, we found that most of the factors associated with caregiver burden were consistent with other studies in literature. For example we found that caregiver burden tended to be higher when caregivers had health issues themselves, or poor overall mental health, or felt anxious or depressed, and this was consistent with findings by other authors (37, 38). We also observed that having an active social life made the caregiver feel less stressed and less burdened (39). Caregiver burden also depends on the patient’s health issues and the need to use healthcare services. We found in our study that if the patient had been admitted to an emergency department, this was associated with higher burden. Other studies have also found that the burden of care of caregivers is higher when patients need more help with their daily activities or have more severe health conditions (40, 41, 42). Limitations First, this is a secondary analysis of a controlled randomized trial assessing an intervention targeting primary care professionals. Our objective may have been too ambitious since the intervention did not target caregivers and our outcome was too indirect. The recruitment of caregivers constitutes the main potential source of bias in our study. Randomization was carried out at the primary care clinics. Although primary care clinics’ characteristics were comparable in both arms, the same cannot be said for caregivers. Caregivers with a severe burden may have been unwilling to participate in the study because they were overwhelmed by their responsibilities. An important loss to follow-up would be another limitation to raise especially since our study focused on sustainability and required a lengthy time commitment. Conclusion Our study compared the sustainability of the impact of two approaches to training primary care professionals in serious illness conversations, team-based and individual-focused, measured immediately after a post-training serious illness conversation, at six months, and at twelve months, on caregiver burden. We found that caregiver burden did not depend significantly on the time that had elapsed since the serious illness conversation. We also found that there was no statistically significant difference between the caregiver burden observed in each arm. Our results suggest that there may be a place for a larger role for caregivers in serious illness conversations and training for primary care professionals should reflect this, for example, by including a module focusing on caregivers. Accompanying caregivers is especially appropriate in the context of interprofessional serious illness conversations training, as it constitutes a task that could be performed by another trained healthcare professional, giving clinicians the time to focus on the patient themselves. Caregivers could receive valuable support from other professionals in caring for their seriously ill loved one, and a future team-based intervention seems inevitable for this population. A further study could pilot a training program that had more of a focus on caregivers. Abbreviations ACP: Advance Care Planning PBRN: Practice-Based Research Network PROMIS: Patient-Reported Outcomes Measurement Information System SD: Standard Deviation SICP: Serious Illness Care Program ZBI: Zarit Burden Interview Declarations Ethics approval and consent to participate: All participants gave informed consent. The parent study received approval from the Trial Innovation Network Single IRB at Vanderbilt University Medical Center (IRB#181084) for the American sites. For sites in Quebec, the study was approved by the Research Ethics Committee of the Centre Intégré Universitaire de Santé et de Services Sociaux de la Capitale-Nationale (ethics number #MP1320191526), and for sites in Ontario, it was approved by the Health Sciences Research Ethics Board of the University of Toronto (#36631) (19). Consent for publication: Not applicable Availability of data and materials: The datasets used and/or analyzed during the current study are available from the corresponding author on reasonable request. Competing interests: The authors declare that they have no competing interests. Funding: Research reported in this article was funded through a Patient-Centered Outcomes Research Institute (PCORI) Award (PLC-1609-36277). The results presented in this article are solely the responsibility of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors or Methodology Committee. FL holds a Tier 1 Canada Research Chair in Shared Decision Making and Knowledge Mobilization. PA held a FRQS Clinical Scholar Award for the duration of this project. The financial providers are not involved in the project. Authors’ contributions: AT, FL, LM, SI, SGB, SGD, PA, and JSP conceived the primary study and participated in its design and/or coordination. KLL and SG performed analysis. KLL, OQA, SG, CBU, SGD, DAB, SGB, LPR and FL interpreted the results and the implications of the study. KLL drafted the preliminary manuscript before submitting it to co-authors. OQA, CBU, SGD, SGB and FL substantively revised it. All authors read and approved the final manuscript . Acknowledgements: We acknowledge the precious work of Louisa Blair for her editorial help with the manuscript and Stéphane Turcotte for his vital insights in the statistical analysis. We also thank the members of the Meta-LARC ACP Cluster Randomized Trial team for their involvement in this project. Collaborators Meta-LARC ACP Cluster Randomized Trial team: Angela K. Combe, Oregon Health & Science University Annette M. Totten, Oregon Health & Science University Barcey T. Levy, University of Iowa Cat Halliwell, University of Colorado David A. Dorr, Oregon Health & Science University David Nowels, University of Colorado Deb Constien, Patient-partner Deborah Dokken, Patient-partner Donald E. Nease, Jr., University of Colorado Dr. B. Angeloe Burch Sr., Patient-partner Elizabeth Fernley, Oregon Health & Science University France Légaré, Université Laval Gail Drey, Patient-partner Gurnoor Kaur Brar, University of Toronto Jacqueline D. Alikhaani, Patient-partner James Pantelas, Patient-partner Jean-Sebastien Paquette, Université Laval Jeanette M. Daly, University of Iowa Jessica E. Ma, Duke University Jodi Lapidus, Oregon Health & Science University Judy Katz, Patient-partner Kate Hanrahan, University of Iowa Kathy Kastner, Patient-partner Katrina Ramsey, Oregon Health & Science University Keith Provin, Patient-partner Kirsten Wentlandt, University Health Network Kylie Lanman, Oregon Health & Science University LeAnn C Michaels, Oregon Health & Science University Lyle J. Fagnan, Oregon Health & Science University Mary F. Henningfield, PhD, University of Wisconsin-Madison Mary M. Minniti, Patient-partner Matthew Howard, Oregon Health & Science University Megan Schmidt, University of Iowa Meredith K. Warman, University of Colorado Michelle Greiver, University of Toronto Olga Petrova, Patient-partner Patrick M. Archambault, Université Laval Peter Kim, University of Iowa Rowena J. Dolor, Duke University Sabrina Guay-Bélanger, VITAM - Centre de recherche en santé durable Sarah Bumatay, Oregon Health & Science University Sarina Schrager, University of Wisconsin-Madison Sean Rice, Oregon Health & Science University Sharon E. Straus, University of Toronto Shelbey Hagen, University of Wisconsin-Madison Shigeko (Seiko) Izumi, Oregon Health & Science University Souleymane Gadio, VITAM - Centre de recherche en santé durable Suélène Georgina Dofara, VITAM - Centre de recherche en santé durable Susan Lowe, Oregon Community Health Information Network - Columbia Gorge Health Council Taryn Bogdewiecz, University of Colorado References Economic UNDo, Affairs S. World population ageing 2019: UN; 2020. Pottie CG, Burch KA, Montross Thomas LP, Irwin SA. Informal caregiving of hospice patients. Journal of palliative medicine. 2014;17(7):845-56. Hafid A, Howard M, Guenter D, Elston D, Fikree S, Gallagher E, et al. 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Lakin JR, Koritsanszky LA, Cunningham R, Maloney FL, Neal BJ, Paladino J, et al. A systematic intervention to improve serious illness communication in primary care. Health Affairs. 2017;36(7):1258-64. Karim S, Levine O, Simon J. The Serious Illness Care Program in Oncology: Evidence, Real-World Implementation and Ongoing Barriers. Current Oncology. 2022;29(3):1527-36. Wittenberg E, Goldsmith JV, Williams Y, Lee A. Caring for Family Caregivers: a Pilot Test of an Online COMFORT™ (SM) Communication Training Module for Undergraduate Nursing Students. J Cancer Educ. 2020;35(1):138-43. Hung L-C, Liu C-C, Hung H-C, Kuo H-W. Effects of a nursing intervention program on disabled patients and their caregivers. Archives of gerontology and geriatrics. 2003;36(3):259-72. Costa GDd, Spineli VMCD, Oliveira MAdC. Professional education on dementias in Primary Health Care: an integrative review. Revista brasileira de enfermagem. 2019;72:1086-93. Cutler S, Morecroft C, Carey P, Kennedy T. 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Development and Evaluation of Serious Illness Conversation Training for Interprofessional Primary Care Teams. J Palliat Med. 2023;26(9). [Available from: https://primarycareacp.org. Adekpedjou R, Stacey D, Brière N, Freitas A, Garvelink MM, Dogba MJ, et al. Engaging caregivers in health-related housing decisions for older adults with cognitive impairment: a cluster randomized trial. The Gerontologist. 2020;60(5):947-57. Stacey D, Légaré F, Pouliot S, Kryworuchko J, Dunn S. Shared decision making models to inform an interprofessional perspective on decision making: a theory analysis. Patient education and counseling. 2010;80(2):164-72. Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: correlates of feelings of burden. The gerontologist. 1980;20(6):649-55. Deeken JF, Taylor KL, Mangan P, Yabroff KR, Ingham JM. Care for the caregivers: a review of self-report instruments developed to measure the burden, needs, and quality of life of informal caregivers. 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Clinical and Investigative Medicine. 2013:E121-E6. Coristine M, Crooks D, Grunfeld E, Stonebridge C, Christie A. Caregiving for women with advanced breast cancer. Psycho‐Oncology: Journal of the Psychological, Social and Behavioral Dimensions of Cancer. 2003;12(7):709-19. Lin M-H, Hsu J-L, Chen T-J, Hwang S-J. Impact of the COVID-19 pandemic on the use of advance care planning services within the veterans administration system in Taiwan. Journal of the Chinese Medical Association. 2021;84(2):197-202. Arnett K, Sudore RL, Nowels D, Feng CX, Levy CR, Lum HD. Advance care planning: understanding clinical routines and experiences of interprofessional team members in diverse health care settings. American Journal of Hospice and Palliative Medicine®. 2017;34(10):946-53. Patel MI, Khateeb S, Coker T. Lay health workers’ perspectives on delivery of advance care planning and symptom screening among adults with cancer: A qualitative study. American Journal of Hospice and Palliative Medicine®. 2021;38(10):1202-11. Silies KT, Köpke S, Schnakenberg R. Informal caregivers and advance care planning: systematic review with qualitative meta-synthesis. BMJ Supportive & Palliative Care. 2022;12(e3):e472-e83. Van der Lee J, Bakker TJ, Duivenvoorden HJ, Dröes R-M. Multivariate models of subjective caregiver burden in dementia: a systematic review. Ageing research reviews. 2014;15:76-93. Chiao CY, Wu HS, Hsiao CY. Caregiver burden for informal caregivers of patients with dementia: A systematic review. International nursing review. 2015;62(3):340-50. Connell CM, Janevic MR, Gallant MP. The costs of caring: impact of dementia on family caregivers. Journal of geriatric psychiatry and neurology. 2001;14(4):179-87. Conde-Sala JL, Garre-Olmo J, Turró-Garriga O, Vilalta-Franch J, López-Pousa S. Differential features of burden between spouse and adult-child caregivers of patients with Alzheimer's disease: an exploratory comparative design. International journal of nursing studies. 2010;47(10):1262-73. Kim H, Chang M, Rose K, Kim S. Predictors of caregiver burden in caregivers of individuals with dementia. Journal of advanced nursing. 2012;68(4):846-55. Rinaldi P, Spazzafumo L, Mastriforti R, Mattioli P, Marvardi M, Polidori MC, et al. Predictors of high level of burden and distress in caregivers of demented patients: results of an Italian multicenter study. International Journal of Geriatric Psychiatry: A journal of the psychiatry of late life and allied sciences. 2005;20(2):168-74. Additional Declarations No competing interests reported. Cite Share Download PDF Status: Published Journal Publication published 21 Oct, 2025 Read the published version in BMC Geriatrics → Version 1 posted Editorial decision: Revision requested 13 Nov, 2024 Editor assigned by journal 26 Oct, 2024 Submission checks completed at journal 26 Oct, 2024 First submitted to journal 24 Oct, 2024 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-5327522","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":373825126,"identity":"641099b4-b729-4fd2-bd37-ba7779fd7a13","order_by":0,"name":"Kouessiba Lorielle Lokossou","email":"","orcid":"","institution":"Department of Social and Preventive Medicine, Faculty of Medicine, Université Laval","correspondingAuthor":false,"prefix":"","firstName":"Kouessiba","middleName":"Lorielle","lastName":"Lokossou","suffix":""},{"id":373825127,"identity":"36baa8fc-1199-4a59-97e8-b62a9b9172d9","order_by":1,"name":"Odilon Quentin 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16:53:09","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-5327522/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-5327522/v1","draftVersion":[],"editorialEvents":[{"content":"https://doi.org/10.1186/s12877-025-06324-7","type":"published","date":"2025-10-21T16:16:22+00:00"}],"editorialNote":"","failedWorkflow":false,"files":[{"id":69420196,"identity":"44080b70-7362-4d69-b7ce-0b47fec29d5b","added_by":"auto","created_at":"2024-11-20 07:39:18","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":243182,"visible":true,"origin":"","legend":"\u003cp\u003eFlow chart of participant recruitment\u003c/p\u003e","description":"","filename":"1.png","url":"https://assets-eu.researchsquare.com/files/rs-5327522/v1/9a363e6e6bca7591879fc1d1.png"},{"id":69420201,"identity":"76594c17-7a34-4119-a78f-c3ccfa040784","added_by":"auto","created_at":"2024-11-20 07:39:21","extension":"png","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":12135,"visible":true,"origin":"","legend":"\u003cp\u003eCaregiver burden trajectory in the two study arms at each time point\u003c/p\u003e","description":"","filename":"2.png","url":"https://assets-eu.researchsquare.com/files/rs-5327522/v1/444cb3fec7b37dacd62aa20c.png"},{"id":94490320,"identity":"e4a7ef6e-b12a-4497-b612-f360e9f0f48c","added_by":"auto","created_at":"2025-10-27 17:09:08","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":1567360,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-5327522/v1/e214c4ec-963b-4539-b5a3-1a6228db0bf7.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Comparison of the sustainability of the impact of team-based versus individual clinician-focused training of primary care professionals in serious illness conversations on caregiver burden of care: a secondary analysis of a cluster randomized trial","fulltext":[{"header":"Background","content":"\u003cp\u003eAccording to a 2019 United Nations report, the number of people aged 65 and over is expected to double by 2050, accounting for 16% of the world population (1). Many older people live with serious or chronic illnesses, often leading to partial or total loss of autonomy. Caregivers play an increasingly important role in their care and decision-making (2). Often, in their frequent interactions with the healthcare system, patients with serious illnesses may undergo aggressive tests and unwanted treatments that can be invasive or painful and do not always align with their wishes (3, 4). Advance Care Planning (ACP) is a dialogue between the patient, healthcare professional(s) and their caregivers that allows patients to express their goals and values regarding potential future care in the event of decision-making incapacity (5). ACP leads to an improvement in the quality of life, a better mood, a reduction in the use of non-beneficial medical care at the end of life, lower expenditures, sustainment of goal-concordant care, and positive outcomes for the family (6, 7). Primary care is recognized as the ideal setting for conducting ACP as primary care professionals have more frequent interactions and a longitudinal relationship with their patients (7). \u0026ldquo;Serious illness conversations\u0026rdquo; is a broad term that applies to both \u0026ldquo;in-the-moment\u0026rdquo; shared medical decision making\u0026mdash;commonly referred to as \u0026ldquo;goals of care\u0026rdquo; conversations\u0026mdash;and the traditional ACP conversations intended to help patients prepare for the future. The goal of serious illness conversations is to help patients explore the future more generally without focusing only on specific treatment options. Unlike with ACP, with serious illness conversations the patient has already been diagnosed with a serious illness and a clinician is involved in the conversation (8).\u003c/p\u003e \u003cp\u003eHowever, despite their willingness to engage in serious illness conversations, primary care professionals report that they often lack sufficient time and training (9, 10). The Serious Illness Care Program (SICP) is a systematic care delivery model created by a team of palliative care experts that aims to enable healthcare professionals to better initiate and lead serious illness conversations (11). The program uses the Serious Illness Conversation Guide (11). The SICP has been extended to primary care settings, showing evidence of acceptance and benefits (12). Its primary goal is to allow more frequent, in-depth, and early conversations between clinicians and seriously ill patients, centered around their goals, values, and priorities, with the aim of positively influencing future care (13). The SICP aims to make awareness and respect for patients' priorities the norm rather than the exception (13). The SICP training was originally developed with an individual clinician-focused approach, but an interprofessional team-based approach was also developed, as it has been shown that an interprofessional approach may facilitate serious illness conversations by reducing the time commitment required from clinicians (5).\u003c/p\u003e \u003cp\u003eHowever, patients and primary care professionals are not the only people involved in end-of-life care. Caregivers play an increasingly important role in patient care and decision-making of patients with serious illnesses (2). Tasks related to that role might be a source of burden for the caregivers (14). Although it has been documented that training primary care professionals to improve health practices has a positive impact on the burden of care of caregivers (15, 16), we do not have a clear picture of the impact of an interprofessional team-based versus an individual clinician-focused approach to training them in serious illness conversations on the burden of care of caregivers. Therefore, based on a previous study that showed that interprofessional team-based healthcare improves overall patient and family caregiver health (17), and the fact that serious illness conversations could be facilitated by a team-based approach, we hypothesized that an interprofessional team-based approach would have better impact on caregiver burden than an individual clinician-focused approach.\u003c/p\u003e \u003cp\u003eOne way to assess the sustainability of the impact of continuing professional development among primary care professionals is to evaluate their impact over time (18).\u003c/p\u003e \u003cp\u003eOur study therefore aimed to compare the sustainability of the impact of primary care professionals' training using the two approaches (individual vs. interprofessional) to serious illness conversations on the caregivers\u0026rsquo; burden of care of patients with serious illnesses.\u003c/p\u003e"},{"header":"Methods","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eStudy design and setting\u003c/h2\u003e \u003cp\u003eWe performed a secondary analysis of a multicenter, parallel-group cluster randomized trial comparing team-based to individual clinician-focused implementation of the SICP training in primary care (19) with post-intervention measures immediately after the intervention, 6 months and 12 months later.\u003c/p\u003e \u003cp\u003eThe parent study\u0026rsquo;s primary outcomes were patient-reported goal-concordant care and days at home. The trial was registered in ClinicalTrials.gov: NCT03577002 and its protocol is published (19). The study took place from January 2018 to August 2022 in primary care clinics located in five states in the United States (Colorado, Iowa, North Carolina, Oregon, Wisconsin) and two provinces in Canada (Quebec and Ontario).\u003c/p\u003e \u003cp\u003eResults of our secondary analysis are reported according to the CONSERVE 2021 statement for cluster randomized trials conducted during the COVID-19 pandemic (20).\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eRecruitment and participants\u003c/h3\u003e\n\u003cp\u003ePrimary care clinics (clusters) were recruited from seven Practice-Based Research Networks (PBRN) in five USA states and two Canadian provinces under the supervision of the joint coordinating center at Oregon Health \u0026amp; Science University and Universit\u0026eacute; Laval, Quebec. The primary care clinics were provided with information about the study. To be eligible to participate, primary care clinics had to: (1) be able to provide at least 30 participants; (2) accept to be randomized into either study arms; (3) have sufficient interprofessional staff to participate in the interprofessional team-based arm, including medical assistants, nurses, social workers, and community health workers; (4) be untrained in any other standardized ACP program.\u003c/p\u003e \u003cp\u003e Caregivers were the targeted participants of our study. After the first serious illness conversation with their primary care professional post-training, patients with serious illnesses were invited by their primary care professional to participate in the study. Once the patient gave consent, they were asked about their preference to include a caregiver, friend, or family member involved in their healthcare in the study. Patients provided the research team with the names and contact details of potential caregivers. Subsequently, a member from the research team contacted the potential caregivers to invite them to participate.\u003c/p\u003e\n\u003ch3\u003eRandomization\u003c/h3\u003e\n\u003cp\u003eThe unit of randomization was the primary care clinic. They were randomly assigned to either the interprofessional arm or the individual arm. A random number generator was used by a biostatistician who had no contact with the primary care clinics or PBRNs and who remained blinded until the completion of the primary analyses. Personnel at the PBRNs, primary care clinics, and the joint coordinating center were not involved in randomization. However, investigators, PBRN leadership, primary care clinics, and research staff were not blinded to the assignment. Primary care clinics and participating primary care professionals could not be blinded to their assigned study arm as they needed to actively undergo training, i.e., implement either the intervention or the control. Further details regarding the randomization process are available elsewhere (19).\u003c/p\u003e\n\u003ch3\u003eIntervention and comparator arms\u003c/h3\u003e\n\u003cp\u003eWe adapted the original Ariadne Labs SICP to create an abbreviated version for this trial. We then developed a new interprofessional training approach (21). Both training approaches lasted three hours: a 1.5-hour online module (Part A), and a 1.5-hour in-person role-play session (Part B). Training materials included the serious illness conversation guide, a tool designed by Ariadne Labs to facilitate communication with patients with serious illnesses (22).\u003c/p\u003e\n\u003ch3\u003eOriginal Serious Illness Care Program\u003c/h3\u003e\n\u003cp\u003eThe original SICP is a multicomponent, structured communication intervention designed to (1) identify patients with serious illnesses; (2) train clinicians to use the serious illness conversation guide to structure serious illness conversation with patients; (3) \u0026lsquo;trigger\u0026rsquo; clinicians to have conversations using the guide with enrolled patients; (4) prepare patients for the conversation by providing them with a letter encouraging them to think about some of the topics raised in the guide; (5) guide clinicians in conducting values and goals conversations; (6) document outcomes of the discussion in a structured format in the electronic medical record and (7) provide patients with a Family Communication Guide to help them continue the discussion at home with their loved ones (11).\u003c/p\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003eIntervention arm: interprofessional team-based approach\u003c/h2\u003e \u003cp\u003eOur new training was based on the interprofessional shared decision-making model and previous workshops (23, 24). Our new team-based approach focused on maximizing the expertise and efficient use of time of each team member to facilitate serious illness conversations. In this approach, the steps are the same as those in individual training, but the tasks are shared among different primary care professionals in the team. Teams consist of primary care clinicians and one or more additional persons from a different professions or practice roles (e.g., nurses, care managers, social workers, medical assistants, chaplains, peer counselors, community health workers). Emphasis was placed on the following aspects: (a) establishing a common understanding of the process and goals of care related to serious illnesses among team members; (b) recognizing the contributions of each team member; (c) maintaining continuous communication within the team; and (d) acknowledging organizational or functional constraints specific to each profession. More details on the development of the team-based training approach are published elsewhere (21).\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eControl arm: individual clinician-focused approach\u003c/h3\u003e\n\u003cp\u003eThe individual clinician-focused approach assumed that serious illness conversations would take place with a single primary care clinician (i.e. physicians, nurse practitioners, physician assistants or residents) who identifies the appropriate patients, leads the serious illness conversations and documents their discussions in the patient\u0026rsquo;s medical record.\u003c/p\u003e\n\u003ch3\u003eOutcomes and measures\u003c/h3\u003e\n\u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003ePrimary outcome and measure\u003c/h2\u003e \u003cp\u003eWe measured caregiver burden as the primary outcome. Caregiver burden refers to the emotional, financial and physical difficulties and burdens faced by family caregivers when caring for someone with serious or chronic illnesses or with loss of autonomy (25). We assessed caregiver burden using the brief version of the Zarit Burden Interview (ZBI) (26). It is a 12-item self-administered questionnaire frequently used to assess the impact of caregiving on caregivers\u0026rsquo; quality of life.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec12\" class=\"Section2\"\u003e \u003ch2\u003eSecondary outcomes and measures\u003c/h2\u003e \u003cp\u003eWe also assessed the overall health of caregivers using the Patient-Reported Outcomes Measurement Information System (PROMIS-29), a psychometrically instrument developed to reflect how patients conceptualize important symptoms and functions (27). The instrument includes four items from each of the seven PROMIS domains (anxiety, depression, fatigue, pain interference, physical functioning, sleep disturbance, and ability to participate in social roles), as well as an additional pain intensity item (28). Caregivers\u0026rsquo; experience with SICP and healthcare utilization by the patient were also assessed. We adapted the Pallet framework (29) to assess the association between caregiver burden and the other factors such as caregivers\u0026rsquo; experience with SICP and healthcare utilization by patients as perceived by the caregivers.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec13\" class=\"Section2\"\u003e \u003ch2\u003eData collection\u003c/h2\u003e \u003cp\u003ePrimary care professionals were trained. Caregiver data were collected after a serious illness conversation between the patient and the primary care professionals. After the caregivers provided informed consent, they completed a self-reported questionnaire. Caregivers completed questionnaires immediately after the serious illness conversation, and then 6 months and 12 months later.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec14\" class=\"Section2\"\u003e \u003ch2\u003eSample size\u003c/h2\u003e \u003cp\u003eSince this was a secondary analysis of a primary study, there was no a priori sample size calculated for this substudy focused on caregivers. Patients were asked to identify their caregivers. Information on the primary study sampling strategy is reported in the published study protocol (19). Sample size estimates were based on expected differences between patient-reported goal-concordant care, days at home and estimates of within-cluster correlations.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec15\" class=\"Section2\"\u003e \u003ch2\u003eData analysis\u003c/h2\u003e \u003cp\u003eWe performed descriptive analysis for all variables. Categorical variables were described using absolute and relative frequencies (numbers, percentages). Continuous variables were described using central tendency measures (means, medians) and measures of dispersion (standard deviations, minimum and maximum). The caregiver burden was treated as a continuous variable. The total ZBI score, that is the sum of the scores obtained for each item, ranges from 0 (no burden) to 48 (severe burden). Total ZBI score can indicate little or no burden (between 0 and 10); moderate burden (above 10 and lower than 20) or severe burden (above 20) (22, 23). Since the caregiver burden did not follow a normal distribution, we performed a linear mixed model to analyze it (30). To account for clustering, we used the practice identifier as a random factor when fitting the models. The PROMIS-29 generates T-scores which are standard scores with a mean of 50 and standard deviation of 10 in a reference population (27).\u003c/p\u003e \u003cp\u003e We performed bivariate analysis through a linear mixed model for each variable of interest to analyze its effect on caregiver burden. We then selected all statistically significant variables (p\u0026thinsp;\u0026lt;\u0026thinsp;0.20) from the bivariate analysis to perform a multivariate model through a linear mixed model. We then performed a manual stepwise backward selection based on the variable significance (p\u0026thinsp;\u0026lt;\u0026thinsp;0.05) in the final adjusted model. To compare the sustainability of the training effect on caregivers, we determined the p-value of the interaction term between study arm and time.\u003c/p\u003e \u003cp\u003eAll analyses were performed using Statistical Analysis Software (SAS) 9.4.\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cdiv id=\"Sec17\" class=\"Section2\"\u003e \u003ch2\u003eCharacteristics of primary care clinics and caregivers\u003c/h2\u003e \u003cp\u003e A total of 45 primary care clinics were recruited and randomized into both study arms. Forty primary care clinics were trained, 19 using the individual clinician-focused approach and 21 using the interprofessional team-based approach. Thirty-eight primary care clinics, 19 in each arm, referred patients and caregivers (Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e). Characteristics of randomized primary care clinics are illustrated in Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e. A total of 192 caregivers (110 in the interprofessional arm, 82 in the individual arm) consented to participate and 171 caregivers (89.06%) completed the ZBI at T1, 144 (75.00%) at T2 and 130 (67.71%) at T3. Most caregivers were female (67.8%), Caucasians (80.2%), aged from 65 to 74 years old (28.6%), had completed at least college or a two-year degree (32.4%), and lived with the patient (63%). Most caregivers were the patient\u0026rsquo;s spouse (51.6%) (Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eCharacteristics of participating primary care clinics.\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"4\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePractices\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eClinician (n, %)\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eInterprofessional (n, %)\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eTotal (n, %)\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNumber of practices\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e22 (100)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e23 (100)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e45 (100)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eCountry\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eUnited States\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e16 (72.7)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e17 (73.9)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e33 (73.3)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCanada\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e6 (27.3)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e6 (26.1)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e12 (26.7)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eSize (of Primary Care Clinicians)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSmall (2\u0026ndash;5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2 (9.0)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e6 (26.1)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e8 (17.8)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMedium (6\u0026ndash;12)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e10 (45.5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e9 (39.1)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e19 (45.2)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eLarge (13\u0026ndash;85)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e10 (45.5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e8 (34.8)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e18 (40.0)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eGeographic setting\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eRural\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e8 (36.4)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e12 (52.2)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e20 (44.4)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSuburban\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e5 (22.7)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e3 (13.0)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e8 (17.8)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eUrban\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e9 (40.9)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e8 (34.8)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e17 (37.8)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eOwnership\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eHospital/health system\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e18 (81.8)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e13 (56.6)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e31 (68.9)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePhysician or physician group\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e4 (18.2)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e7 (30.4)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e11 (24.4)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFederally Qualified Health Center\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e0 (0.0)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e3 (13.0)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e3 (6.7)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eSpecialty\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFamily medicine\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e19 (82.6)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e15 (68.2)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e34 (75.5)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eInternal medicine\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3 (13.0)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e5 (22.7)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e8 (17.8)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eBoth Family and internal medicine\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1 (4.4)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2 (9.1)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e3 (6.7)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSize of Primary Care Clinics, median (min-max)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e12 (3 to 40)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e8 (4 to 46)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e10 (3 to 46)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eCaregivers characteristics\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"5\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colspan=\"2\" nameend=\"c3\" namest=\"c2\"\u003e \u003cp\u003eArm\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003eIndividual\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e\u003cb\u003eInterprofessional\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e\u003cb\u003eTotal\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003en Clusters\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e19\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e19\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e38\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003en Caregivers\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e82\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e110\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e192\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCountry, n (%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eUnited-States\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e61 (74.4)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e62 (56.4)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e123 (64.1)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCanada\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e21 (25.6)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e48 (43.6)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e69 (35.9)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAge, n (%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e25\u0026ndash;34\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e-\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e1 (0.9)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e1 (0.5)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e35\u0026ndash;44\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2 (2.4)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e4 (3.6)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e6 (3.2)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e45\u0026ndash;54\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e10 (12.2)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e8 (7.3)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e18 (9.3)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e55\u0026ndash;64\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e18 (21.9)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e30 (27.3)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e48 (25.1)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e65\u0026ndash;74\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e21 (25.6)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e34 (30.9)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e55 (28.6)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e75 or older\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e19 (23.3)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e24 (21.8)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e43 (22.4)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMissing\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e12 (14.6)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e9 (8.2)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e21 (10.9)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSex, n (%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e16 (19.6)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e25 (22.3)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e41 (21.3)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e54 (65.8)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e76 (69.6)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e130 (67.8)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMissing\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e12 (14.6)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e9 (8.1)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e21 (10.9)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eRace, n (%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCaucasians\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e64 (78.0)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e90 (81.8)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e154 (80.2)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eBlack or African American\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3 (3.8)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e4 (3.6)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e7 (3.6)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAsian\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2 (2.5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e3 (2.7)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e5 (2.6)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMiddle Eastern\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e-\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e1 (0.9)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e1 (0.5)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMixed race\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1 (1.2)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e1 (0.9)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e2 (1.2)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eOther race\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e-\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e1 (0.91)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e1 (0.52)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMissings\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e12 (14.5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e11 (10.1)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e23 (11.9)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eRelationship with patients, n (%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSpouse\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e44 (53.7)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e55 (50.0)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e99 (51.6)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eEx-spouse\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1 (1.2)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e-\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e1 (0.5)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eParent\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1 (1.2)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e2 (1.8)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e3 (1.6)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFriend\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e-\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e3 (2.8)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e3 (1.6)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDaughter\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e20 (24.4)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e35 (31.8)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e55 (28.7)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSon\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e5 (6.1)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e6 (5.5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e11 (5.7)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePartner\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e-\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e1 (0.9)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e1 (0.5)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSibling\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3 (3.7)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e1 (0.9)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e4 (2.0)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSignificant other\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1 (1.2)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e-\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e1 (0.5)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eOther relative\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2 (2.4)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e2 (1.8)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e4 (2.0)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eOther\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2 (2.4)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e2 (1.8)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e4 (2.0)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMissing\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3 (3.7)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e3 (2.7)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e6 (3.3)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eEducation, n (%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eGrade 8 or less\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1 (1.2)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e4 (3.6)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e5 (2.6)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSome high school. but did not graduate\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2 (2.4)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e13 (11.8)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e15 (7.8)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eHigh school graduate or GED\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e20 (24.4)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e21 (19.1)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e41 (21.4)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSome college or 2-year degree\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e26 (31.7)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e36 (32.7)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e62 (32.4)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e4-year college graduate\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e10 (12.3)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e15 (13.6)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e25 (13.0)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMore than 4-year college degree\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e11 (13.4)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e12 (10.9)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e23 (11.9)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMissing\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e12 (14.6)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e9 (8.3)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e21 (10.9))\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePatient\u0026rsquo;s maincondition n (%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCancer\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e15 (18.3)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e22 (20.1)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e37 (19.3)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCardiovascular\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e10 (12.2)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e26 (23.6)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e36 (18.8)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eLung disease\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e5 (6.1)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e3 (2.7)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e8 (4.1)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDiabetes and kidney problems\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e4 (4.9)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e5 (4.6)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e9 (4.7)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eUlcer/stomach/liver/gastrointestinal problems\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1 (1.2)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e2 (1.8)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e3 (1.6)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eBlood disease\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e-\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e1 (0.9)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e1 (0.5)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDepression and anxiety\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2 (2.4)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e2 (1.8)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e4 (2.1)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMusculoskeletal\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1 (1.2)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e1 (0.9)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e2 (1.0)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNeurological\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3 (3.7)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e3 (2.7)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e6 (3.1)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eImmune/auto immune\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e5 (6.1)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e3 (2.7)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e8 (4.2)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFunctional problems\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e6 (7.3)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e11 (10.0)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e17 (8.8)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMultiple systems (not cancer)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2 (2.4)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e3 (2.7)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e5 (2.6)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMissing\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e28 (34.2)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e28 (25.5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e56 (29.2)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCohabitation, n (%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNo\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e23 (28.1)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e29 (26.4)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e52 (27.1)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e48 (58.5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e73 (66.4)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e121 (63.0)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMissings\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e11 (13.4)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e \u003cp\u003e8 (7.2)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e19 (9.9)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec18\" class=\"Section2\"\u003e \u003ch2\u003eCaregiver burden\u003c/h2\u003e \u003cp\u003eThe caregiver burden mean score (standard deviation (SD)) was 11.3/48 (8.5) (n\u0026thinsp;=\u0026thinsp;101) in the interprofessional arm at T1; 9.1/48 (6.8) (n\u0026thinsp;=\u0026thinsp;80) at T2 and 9.9/48 (8.3) (n\u0026thinsp;=\u0026thinsp;74) at T3. The mean score (SD) was 10.8/48 (9.0) (n\u0026thinsp;=\u0026thinsp;70); in the individual arm at T1; 10.1/48 (8.2) (n\u0026thinsp;=\u0026thinsp;64) at T2 and 9.2/48 (8.0) (n\u0026thinsp;=\u0026thinsp;56) at T3, respectively (Table\u0026nbsp;\u003cspan refid=\"Tab3\" class=\"InternalRef\"\u003e3\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab3\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 3\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eDistribution of caregiver burden of care\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"7\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c6\" colnum=\"6\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c7\" colnum=\"7\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colspan=\"2\" nameend=\"c3\" namest=\"c2\"\u003e \u003cp\u003eIndividual\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colspan=\"2\" nameend=\"c5\" namest=\"c4\"\u003e \u003cp\u003eInterprofessional\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colspan=\"2\" nameend=\"c7\" namest=\"c6\"\u003e \u003cp\u003eTotal\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003eN\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u003cb\u003eMean (SD)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e\u003cb\u003eN\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e\u003cb\u003eMean (SD)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e\u003cb\u003eN\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e\u003cb\u003eMean (SD)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eBurden of care score T1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e70\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e10.8 (9.0)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e101\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e11.3 (8.5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e171\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e11.1 (8.7)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eBurden of care score T2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e64\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e10.1 (8.2)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e80\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e9.1 (6.8)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e144\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e9.5 (7.4)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eBurden of care score T3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e56\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e9.2 (8.0)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e74\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e9.9 (8.3)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e130\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e9.6 (7.9)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003ctfoot\u003e \u003ctr\u003e\u003ctd colspan=\"7\"\u003eSD: standard deviation\u003c/td\u003e\u003c/tr\u003e \u003ctr\u003e\u003ctd colspan=\"7\"\u003eT1: after the serious illness conversation; T2: 6 months after the serious illness conversation; T3: 12 months after the serious illness conversation\u003c/td\u003e\u003c/tr\u003e \u003c/tfoot\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eThe difference in mean burden between the two study arms was 1.05 (95% CI -1.47 to 3.59; p\u0026thinsp;=\u0026thinsp;0.40), -0.24 (95% CI -2.57 to 2.08; p\u0026thinsp;=\u0026thinsp;0.82), and 0.09 (95% CI -2.61 to 2.81; p\u0026thinsp;=\u0026thinsp;0.94) at T1, T2 and T3 respectively. We adjusted for caregiver\u0026rsquo;s overall health, caregiver\u0026rsquo;s mental or emotional health, anxiety, patient spending any night in a nursing home or rehab in the past 6 months and caregiver\u0026rsquo;s social life at T1, caregiver\u0026rsquo;s mental or emotional health and caregiver\u0026rsquo;s social life and caregiver\u0026rsquo;s ethnicity at T2, and at T3, caregiver\u0026rsquo;s mental or emotional health and patient having received palliative care in the past 6 months (Table\u0026nbsp;\u003cspan refid=\"Tab4\" class=\"InternalRef\"\u003e4\u003c/span\u003e). The p-value of the interaction term between study arm and time was p\u0026thinsp;=\u0026thinsp;0.47 (information not shown).\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab4\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 4\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eMean difference of burden of care at each time point\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"7\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c6\" colnum=\"6\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c7\" colnum=\"7\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\" morerows=\"2\" rowspan=\"3\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colspan=\"6\" nameend=\"c7\" namest=\"c2\"\u003e \u003cp\u003eBurden of care (difference in means)\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003ctr\u003e \u003cth align=\"left\" colspan=\"3\" nameend=\"c4\" namest=\"c2\"\u003e \u003cp\u003e\u003cb\u003eUnadjusted model\u003c/b\u003e\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colspan=\"3\" nameend=\"c7\" namest=\"c5\"\u003e \u003cp\u003e\u003cb\u003eAdjusted model\u003c/b\u003e\u003csup\u003e\u003cb\u003e*\u003c/b\u003e\u003c/sup\u003e\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003eEstimate\u003c/b\u003e\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u003cb\u003eCI 95%\u003c/b\u003e\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003e\u003cb\u003ep value\u003c/b\u003e\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c5\"\u003e \u003cp\u003e\u003cb\u003eEstimate\u003c/b\u003e\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c6\"\u003e \u003cp\u003e\u003cb\u003eCI 95%\u003c/b\u003e\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c7\"\u003e \u003cp\u003e\u003cb\u003ep value\u003c/b\u003e\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u003cb\u003e(N\u0026thinsp;=\u0026thinsp;171)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e\u003cb\u003e(N\u0026thinsp;=\u0026thinsp;162)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eT1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e0.78\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u0026minus;\u0026thinsp;2.63; 4.19\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e0.64\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e1.05\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e\u0026minus;\u0026thinsp;1.47; 3.59\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e0.40\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colspan=\"3\" nameend=\"c4\" namest=\"c2\"\u003e \u003cp\u003e\u003cb\u003e(N\u0026thinsp;=\u0026thinsp;144)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"3\" nameend=\"c7\" namest=\"c5\"\u003e \u003cp\u003e\u003cb\u003e(N\u0026thinsp;=\u0026thinsp;137)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eT2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026minus;\u0026thinsp;0.98\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u0026minus;\u0026thinsp;3.53; 1.57\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e0.43\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e\u0026minus;\u0026thinsp;0.24\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e\u0026minus;\u0026thinsp;2.57; 2.08\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e0.82\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colspan=\"3\" nameend=\"c4\" namest=\"c2\"\u003e \u003cp\u003e\u003cb\u003e(N\u0026thinsp;=\u0026thinsp;130)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"3\" nameend=\"c7\" namest=\"c5\"\u003e \u003cp\u003e\u003cb\u003e(N\u0026thinsp;=\u0026thinsp;122)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eT3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e0.75\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u0026minus;\u0026thinsp;2.13; 3.63\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e0.59\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e0.09\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e\u0026minus;\u0026thinsp;2.61; 2.81\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e0.94\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003ctfoot\u003e \u003ctr\u003e\u003ctd colspan=\"7\"\u003e95%CI: confidence interval at 95%\u003c/td\u003e\u003c/tr\u003e \u003ctr\u003e\u003ctd colspan=\"7\"\u003eSignificance threshold (P\u0026thinsp;\u0026lt;\u0026thinsp;0.05)\u003c/td\u003e\u003c/tr\u003e \u003ctr\u003e\u003ctd colspan=\"7\"\u003eMixed linear regression test\u003c/td\u003e\u003c/tr\u003e \u003ctr\u003e\u003ctd colspan=\"7\"\u003eT1: after the serious illness conversation; T2: 6 months after the serious illness conversation; T3: 12 months after the serious illness conversation\u003c/td\u003e\u003c/tr\u003e \u003ctr\u003e\u003ctd colspan=\"7\"\u003e*Adjusted for Caregiver\u0026rsquo;s overall health, caregiver\u0026rsquo;s mental or emotional health, anxiety, patient spending any night in nursing home/rehab in past 6 months and caregiver\u0026rsquo;s social life at T1, caregiver\u0026rsquo;s mental or emotional health and caregiver\u0026rsquo;s social life at T2, and at T3, caregiver\u0026rsquo;s mental or emotional health and patient having palliative care in past 6 months.\u003c/td\u003e\u003c/tr\u003e \u003c/tfoot\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eSince the interaction term between the study arm and time was not statistically significant, we performed a model with time effect (the variables from the three time points were combined into a single time point). The mean difference between study arms was then \u0026minus;\u0026thinsp;0.16 (95% CI: -2.32 to 2.00; p\u0026thinsp;=\u0026thinsp;0.88). After adjusting for caregivers\u0026rsquo; overall mental or emotional health, anxiety, depression, social roles, and the patient\u0026rsquo;s use of an emergency department in the past 6 months, the mean difference between arms was 0.90 (95% CI: -0.76 to 2.57; p\u0026thinsp;=\u0026thinsp;0.28). There were no statistically significant differences in the perceived level of caregiver burden between the two arms (p\u0026thinsp;=\u0026thinsp;0.28) (Table\u0026nbsp;\u003cspan refid=\"Tab5\" class=\"InternalRef\"\u003e5\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab5\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 5\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eFinal model with time effect\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"6\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c6\" colnum=\"6\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colspan=\"6\" nameend=\"c6\" namest=\"c1\"\u003e \u003cp\u003eBurden of care (Means differences)\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"3\" nameend=\"c3\" namest=\"c1\"\u003e \u003cp\u003eUnadjusted model\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"3\" nameend=\"c6\" namest=\"c4\"\u003e \u003cp\u003e\u003cb\u003eAdjusted model *\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eEstimate\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003eCI 95%\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u003cb\u003eP-value\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e\u003cb\u003eEstimate\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e\u003cb\u003eCI 95%\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e\u003cb\u003eP-value\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e-0.16\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e-2.17; 2.19\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u003cb\u003e0.88\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e0,90\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e\u0026minus;\u0026thinsp;0.79; 2.49\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e\u003cb\u003e0.28\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003ctfoot\u003e \u003ctr\u003e\u003ctd colspan=\"6\"\u003e95%CI: confidence interval at 95%\u003c/td\u003e\u003c/tr\u003e \u003ctr\u003e\u003ctd colspan=\"6\"\u003eSignificance threshold (P\u0026thinsp;\u0026lt;\u0026thinsp;0.05)\u003c/td\u003e\u003c/tr\u003e \u003ctr\u003e\u003ctd colspan=\"6\"\u003eMixed linear regression test\u003c/td\u003e\u003c/tr\u003e \u003ctr\u003e\u003ctd colspan=\"6\"\u003e*Adjusted for caregivers\u0026rsquo; overall mental or emotional health, anxiety, depression, social roles, and the patient\u0026rsquo;s use of an emergency department in the past 6 months.\u003c/td\u003e\u003c/tr\u003e \u003c/tfoot\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec19\" class=\"Section2\"\u003e \u003ch2\u003eOther factors associated with caregiver burden\u003c/h2\u003e \u003cp\u003eFactors associated with higher caregiver burden were as follows: any visit to the emergency department in the past 6 months increased caregiver burden by 1.35 points (p\u0026thinsp;=\u0026thinsp;0.01); caregiver feeling anxious increased caregiver burden by 0.14 points (p\u0026thinsp;=\u0026thinsp;0.0005) and caregiver feeling depressed increased caregiver burden by 0.18 points (p\u0026thinsp;\u0026lt;\u0026thinsp;.0001). Factors associated with lower burden included the following: optimal caregiver overall mental health decreased caregiver burden by 1.45 points (p\u0026thinsp;=\u0026thinsp;0.0001) and having an active social life decreased caregiver burden by 0.20 points (p\u0026thinsp;\u0026lt;\u0026thinsp;.0001).\u003c/p\u003e \u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eOur study compared the sustainability of the impact of two SICP primary care professional training approaches (individual and interprofessional) to serious illness conversations on burden of care of caregivers of patients with serious illnesses. We measured the burden of care after a serious illness conversation, and then 6 months and 12 months later. We found that the impact of SICP training on the caregivers\u0026rsquo; burden of care did not change from T1 to T3 in either arm (i.e., no changes after 6 and 12 months). The level of burden perceived by caregivers did not depend on the time that had elapsed since the serious illness conversation. We also found that there was no significant difference between the caregiver burden observed in the interprofessional arm and the individual arm. After adjusting for caregiver\u0026rsquo;s overall mental and emotional health, anxiety, depression, social roles, and patient\u0026rsquo;s use of the emergency department in the past 6 months, the difference remained statistically insignificant. Finally, we observed that the caregiver burden was associated with five variables, namely the caregiver\u0026rsquo;s overall mental and emotional health, anxiety, depression, social roles, and the patient\u0026rsquo;s use of the emergency department in the past 6 months. These results lead us to make the following observations.\u003c/p\u003e \u003cp\u003eFirst, the caregiver burden was low and similar in both interprofessional and individual arms at all time points. These results were not statistically significant. While we expected a reduction in caregiver burden over time, the caregiver burden did not diminish significantly. This could be because the health of patients who need serious illness conversations is deteriorating, and while serious illness conversations might alleviate caregiver burden from the point of view of decisions about care, their burden may increase for other reasons related to their loved one\u0026rsquo;s approaching death (31). Studies show that often, caregivers do not look after themselves particularly well; they do not eat properly, often cease activities outside of the home and postpone their own medical appointments (32). Also, the COVID-19 pandemic could have impacted caregiver burden at T2 (6 months) and T3 (12 months) because during the pandemic, serious illness conversations were not a priority (33). During the most intense period of the pandemic, some hospitals stopped offering non-emergency services such as serious illness conversation services to minimize the spread of COVID-19 (33).\u003c/p\u003e \u003cp\u003eSecond, we did not find any statistically significant difference between the level of burden observed in each arm. We can explain our results by the fact that there is considerable variation in primary care clinics and systems across countries, states, and provinces concerning the responsibility for initiating discussions about serious illnesses. Clinicians are usually the ones who initiate serious illness conversations and healthcare staff generally think that it is the doctor\u0026rsquo;s responsibility to initiate these conversations (34). Indeed, the other healthcare workers usually lack experience with serious illness conversations (35). The team members in the interprofessional team-based arm may therefore not have felt they had an ethical obligation or requirement according to the professional norms within their practice or healthcare set up to engage in such discussions. In both arms of the study, therefore, conversations were more likely to have been led by clinicians, and thus the impact on patients and therefore on their caregivers would have been the same. The lack of impact on caregivers of the training could also be explained by the fact that there was little emphasis on caregivers in the intervention itself, whereas caregivers are often involved in decisions about end of life and need to be closely involved in such discussions, as confirmed by numerous studies (36). Our results suggest that there should be more emphasis on caregivers in both training programs and even a separate module on accompanying caregivers through the serious illnesses of their loved ones. This specific role could be added to the tasks surrounding serious illness conversations that interprofessional teams undertake.\u003c/p\u003e \u003cp\u003eThird, as secondary outcomes, we found that most of the factors associated with caregiver burden were consistent with other studies in literature. For example we found that caregiver burden tended to be higher when caregivers had health issues themselves, or poor overall mental health, or felt anxious or depressed, and this was consistent with findings by other authors (37, 38). We also observed that having an active social life made the caregiver feel less stressed and less burdened (39). Caregiver burden also depends on the patient\u0026rsquo;s health issues and the need to use healthcare services. We found in our study that if the patient had been admitted to an emergency department, this was associated with higher burden. Other studies have also found that the burden of care of caregivers is higher when patients need more help with their daily activities or have more severe health conditions (40, 41, 42).\u003c/p\u003e \u003cdiv id=\"Sec21\" class=\"Section2\"\u003e \u003ch2\u003eLimitations\u003c/h2\u003e \u003cp\u003eFirst, this is a secondary analysis of a controlled randomized trial assessing an intervention targeting primary care professionals. Our objective may have been too ambitious since the intervention did not target caregivers and our outcome was too indirect. The recruitment of caregivers constitutes the main potential source of bias in our study. Randomization was carried out at the primary care clinics. Although primary care clinics\u0026rsquo; characteristics were comparable in both arms, the same cannot be said for caregivers. Caregivers with a severe burden may have been unwilling to participate in the study because they were overwhelmed by their responsibilities. An important loss to follow-up would be another limitation to raise especially since our study focused on sustainability and required a lengthy time commitment.\u003c/p\u003e \u003c/div\u003e"},{"header":"Conclusion","content":"\u003cp\u003eOur study compared the sustainability of the impact of two approaches to training primary care professionals in serious illness conversations, team-based and individual-focused, measured immediately after a post-training serious illness conversation, at six months, and at twelve months, on caregiver burden. We found that caregiver burden did not depend significantly on the time that had elapsed since the serious illness conversation. We also found that there was no statistically significant difference between the caregiver burden observed in each arm. Our results suggest that there may be a place for a larger role for caregivers in serious illness conversations and training for primary care professionals should reflect this, for example, by including a module focusing on caregivers. Accompanying caregivers is especially appropriate in the context of interprofessional serious illness conversations training, as it constitutes a task that could be performed by another trained healthcare professional, giving clinicians the time to focus on the patient themselves. Caregivers could receive valuable support from other professionals in caring for their seriously ill loved one, and a future team-based intervention seems inevitable for this population. A further study could pilot a training program that had more of a focus on caregivers.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cp\u003eACP: Advance Care Planning\u003c/p\u003e\n\u003cp\u003ePBRN: Practice-Based Research Network\u003c/p\u003e\n\u003cp\u003ePROMIS:\u0026nbsp;Patient-Reported Outcomes Measurement Information System\u003c/p\u003e\n\u003cp\u003eSD: Standard Deviation\u003c/p\u003e\n\u003cp\u003eSICP: Serious Illness Care Program\u003c/p\u003e\n\u003cp\u003eZBI: Zarit Burden Interview\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate: All\u003c/strong\u003e participants gave informed consent. The parent study received approval from the Trial Innovation Network Single IRB at Vanderbilt University Medical Center (IRB#181084) for the American sites. For sites in Quebec, the study was approved by the Research Ethics Committee of the Centre Int\u0026eacute;gr\u0026eacute; Universitaire de Sant\u0026eacute; et de Services Sociaux de la Capitale-Nationale (ethics number #MP1320191526), and for sites in Ontario, it was approved by the Health Sciences Research Ethics Board of the University of Toronto (#36631)\u0026nbsp;(19).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for publication:\u0026nbsp;\u003c/strong\u003eNot applicable\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of data and materials:\u0026nbsp;\u003c/strong\u003eThe datasets used and/or analyzed during the current study are available from the corresponding author on reasonable request.\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests:\u0026nbsp;\u003c/strong\u003eThe authors declare that they have no competing interests.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding:\u0026nbsp;\u003c/strong\u003eResearch reported in this article was funded through a Patient-Centered Outcomes Research Institute (PCORI) Award (PLC-1609-36277). The results presented in this article are solely the responsibility of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors or Methodology Committee. FL holds a Tier 1 Canada Research Chair in Shared Decision Making and Knowledge Mobilization. PA held a FRQS Clinical Scholar Award for the duration of this project. The financial providers are not involved in the project.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors\u0026rsquo; contributions:\u0026nbsp;\u003c/strong\u003eAT, FL, LM, SI, SGB, SGD, PA, and JSP conceived the primary study and participated in its design and/or coordination. KLL and SG performed analysis. KLL, OQA, SG, CBU, SGD, DAB, SGB, LPR and FL interpreted the results and the implications of the study. KLL drafted the preliminary manuscript before submitting it to co-authors. OQA, CBU, SGD, SGB and FL substantively revised it. All authors read and approved the final manuscript\u003cstrong\u003e.\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgements:\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWe acknowledge the precious work of Louisa Blair for her editorial help with the manuscript and St\u0026eacute;phane Turcotte for his vital insights in the statistical analysis. We also thank the members of the Meta-LARC ACP Cluster Randomized Trial team for their involvement in this project.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCollaborators Meta-LARC ACP Cluster Randomized Trial team:\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAngela K. Combe, Oregon Health \u0026amp; Science University\u003c/p\u003e\n\u003cp\u003eAnnette M. Totten, Oregon Health \u0026amp; Science University\u003c/p\u003e\n\u003cp\u003eBarcey T. Levy, University of Iowa\u003c/p\u003e\n\u003cp\u003eCat Halliwell, University of Colorado\u003c/p\u003e\n\u003cp\u003eDavid A. Dorr, Oregon Health \u0026amp; Science University\u003c/p\u003e\n\u003cp\u003eDavid Nowels, University of Colorado\u003c/p\u003e\n\u003cp\u003eDeb Constien, Patient-partner\u003c/p\u003e\n\u003cp\u003eDeborah Dokken, Patient-partner\u003c/p\u003e\n\u003cp\u003eDonald E. Nease, Jr., University of Colorado\u003c/p\u003e\n\u003cp\u003eDr. B. Angeloe Burch Sr., Patient-partner\u003c/p\u003e\n\u003cp\u003eElizabeth Fernley, Oregon Health \u0026amp; Science University\u003c/p\u003e\n\u003cp\u003eFrance L\u0026eacute;gar\u0026eacute;, Universit\u0026eacute; Laval\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eGail Drey, Patient-partner\u003c/p\u003e\n\u003cp\u003eGurnoor Kaur Brar, University of Toronto\u003c/p\u003e\n\u003cp\u003eJacqueline D. Alikhaani, Patient-partner\u003c/p\u003e\n\u003cp\u003eJames Pantelas, Patient-partner\u003c/p\u003e\n\u003cp\u003eJean-Sebastien Paquette, Universit\u0026eacute; Laval\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eJeanette M. Daly, University of Iowa\u003c/p\u003e\n\u003cp\u003eJessica E. Ma, Duke University\u003c/p\u003e\n\u003cp\u003eJodi Lapidus, Oregon Health \u0026amp; Science University\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eJudy Katz, Patient-partner\u003c/p\u003e\n\u003cp\u003eKate Hanrahan, University of Iowa\u003c/p\u003e\n\u003cp\u003eKathy Kastner, Patient-partner\u003c/p\u003e\n\u003cp\u003eKatrina Ramsey, Oregon Health \u0026amp; Science University\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eKeith Provin, Patient-partner\u003c/p\u003e\n\u003cp\u003eKirsten Wentlandt, University Health Network\u003c/p\u003e\n\u003cp\u003eKylie Lanman, Oregon Health \u0026amp; Science University\u003c/p\u003e\n\u003cp\u003eLeAnn C Michaels, Oregon Health \u0026amp; Science University\u003c/p\u003e\n\u003cp\u003eLyle J. Fagnan, Oregon Health \u0026amp; Science University\u003c/p\u003e\n\u003cp\u003eMary F. Henningfield, PhD, University of Wisconsin-Madison\u003c/p\u003e\n\u003cp\u003eMary M. Minniti, Patient-partner\u003c/p\u003e\n\u003cp\u003eMatthew Howard, Oregon Health \u0026amp; Science University\u003c/p\u003e\n\u003cp\u003eMegan Schmidt, University of Iowa\u003c/p\u003e\n\u003cp\u003eMeredith K. Warman, University of Colorado\u003c/p\u003e\n\u003cp\u003eMichelle Greiver, University of Toronto\u003c/p\u003e\n\u003cp\u003eOlga Petrova, Patient-partner\u003c/p\u003e\n\u003cp\u003ePatrick M. Archambault, Universit\u0026eacute; Laval\u0026nbsp;\u003c/p\u003e\n\u003cp\u003ePeter Kim, University of Iowa\u003c/p\u003e\n\u003cp\u003eRowena J. Dolor, Duke University\u003c/p\u003e\n\u003cp\u003eSabrina Guay-B\u0026eacute;langer, VITAM - Centre de recherche en sant\u0026eacute; durable\u003c/p\u003e\n\u003cp\u003eSarah Bumatay, Oregon Health \u0026amp; Science University\u003c/p\u003e\n\u003cp\u003eSarina Schrager, University of Wisconsin-Madison\u003c/p\u003e\n\u003cp\u003eSean Rice, Oregon Health \u0026amp; Science University\u003c/p\u003e\n\u003cp\u003eSharon E. Straus, University of Toronto\u003c/p\u003e\n\u003cp\u003eShelbey Hagen, University of Wisconsin-Madison\u003c/p\u003e\n\u003cp\u003eShigeko (Seiko) Izumi, Oregon Health \u0026amp; Science University\u003c/p\u003e\n\u003cp\u003eSouleymane Gadio, VITAM - Centre de recherche en sant\u0026eacute; durable\u003c/p\u003e\n\u003cp\u003eSu\u0026eacute;l\u0026egrave;ne Georgina Dofara, VITAM - Centre de recherche en sant\u0026eacute; durable\u003c/p\u003e\n\u003cp\u003eSusan Lowe, Oregon Community Health Information Network - Columbia Gorge Health Council\u003c/p\u003e\n\u003cp\u003eTaryn Bogdewiecz, University of Colorado\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n \u003cli\u003eEconomic UNDo, Affairs S. World population ageing 2019: UN; 2020.\u003c/li\u003e\n \u003cli\u003ePottie CG, Burch KA, Montross Thomas LP, Irwin SA. Informal caregiving of hospice patients. 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Multivariate models of subjective caregiver burden in dementia: a systematic review. Ageing research reviews. 2014;15:76-93.\u003c/li\u003e\n \u003cli\u003eChiao CY, Wu HS, Hsiao CY. Caregiver burden for informal caregivers of patients with dementia: A systematic review. International nursing review. 2015;62(3):340-50.\u003c/li\u003e\n \u003cli\u003eConnell CM, Janevic MR, Gallant MP. The costs of caring: impact of dementia on family caregivers. Journal of geriatric psychiatry and neurology. 2001;14(4):179-87.\u003c/li\u003e\n \u003cli\u003eConde-Sala JL, Garre-Olmo J, Turró-Garriga O, Vilalta-Franch J, López-Pousa S. Differential features of burden between spouse and adult-child caregivers of patients with Alzheimer's disease: an exploratory comparative design. International journal of nursing studies. 2010;47(10):1262-73.\u003c/li\u003e\n \u003cli\u003eKim H, Chang M, Rose K, Kim S. Predictors of caregiver burden in caregivers of individuals with dementia. Journal of advanced nursing. 2012;68(4):846-55.\u003c/li\u003e\n \u003cli\u003eRinaldi P, Spazzafumo L, Mastriforti R, Mattioli P, Marvardi M, Polidori MC, et al. Predictors of high level of burden and distress in caregivers of demented patients: results of an Italian multicenter study. International Journal of Geriatric Psychiatry: A journal of the psychiatry of late life and allied sciences. 2005;20(2):168-74.\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-geriatrics","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bgtc","sideBox":"Learn more about [BMC Geriatrics](http://bmcgeriatr.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/bgtc/default.aspx","title":"BMC Geriatrics","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Health care professional training, family caregivers, caregiver burden, advance care planning, Zarit burden interview, serious illness conversations","lastPublishedDoi":"10.21203/rs.3.rs-5327522/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-5327522/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground: \u003c/strong\u003eTraining health professionals in serious illness conversations is important for patients with serious illnesses and for their caregivers. However, most training focuses on individual clinicians rather than on healthcare teams. We aimed to compare the sustainability of the impact of a team-based training program in serious illness conversations with that of an individual clinician-focused training program on the burden of care of caregivers of patients with serious illnesses.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods:\u003c/strong\u003eWe performed a secondary analysis of caregivers’ data from a preliminary cluster randomized trial in the USA and Canada in which 42 primary care clinics were randomized to an interprofessional team-based training arm (intervention) or an individual clinician-focused training arm (control). Seriously ill patients who had had a serious illness conversation with the trained clinicians were asked to refer a caregiver. We used the Zarit Burden Interview (range: 0-48) to assess caregiver burden immediately after the serious illness conversation (T1), six months later (T2) and 12 months later (T3). Statistical analysis using a linear mixed model were performed to compare caregiver burden between the two arms at the three times.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults\u003c/strong\u003e: We included 192 caregivers from 42 primary care clinics. Most were female (67.8%); aged 65-74 (28.6%). The mean caregiver burden scores were low, and similar in both the arms at the three times. The difference in mean burden between the two study arms was 1.05 (95% CI -1.47 to 3.59; p=0.40), -0.24 (95% CI -2.57 to 2.08; p=0.82), and 0.09 (95% CI -2.61 to 2.81; p=0.94) at T1, T2 and T3 respectively. The p-value of the interaction term between study arm and time was p=0.47. Mean difference between arms after performing a model with time effect and after adjusting was 0.90 (95% CI -0.76 to 2.57; p=0.28). Various other factors such as caregivers feeling anxious or depressedwere associated with caregiver burden.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusion:\u003c/strong\u003eAnalysis showed that there was no difference between perceived caregiver burden after the interprofessional team-based training approach and after the individual clinician-focused training approach. Our study did however underline the importance of recognizing other factors influencing caregiver well-being.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTrial registration\u003c/strong\u003e: ClinicalTrials.gov (ID: NCT03577002).\u003c/p\u003e","manuscriptTitle":"Comparison of the sustainability of the impact of team-based versus individual clinician-focused training of primary care professionals in serious illness conversations on caregiver burden of care: a secondary analysis of a cluster randomized trial","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-11-20 07:38:47","doi":"10.21203/rs.3.rs-5327522/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2024-11-13T09:02:34+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2024-10-26T08:24:56+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2024-10-26T08:24:19+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Geriatrics","date":"2024-10-24T16:42:19+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-geriatrics","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bgtc","sideBox":"Learn more about [BMC Geriatrics](http://bmcgeriatr.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/bgtc/default.aspx","title":"BMC Geriatrics","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"02857f1e-aaa1-415b-bee5-3e2946440ba4","owner":[],"postedDate":"November 20th, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[],"tags":[],"updatedAt":"2025-10-27T16:25:46+00:00","versionOfRecord":{"articleIdentity":"rs-5327522","link":"https://doi.org/10.1186/s12877-025-06324-7","journal":{"identity":"bmc-geriatrics","isVorOnly":false,"title":"BMC Geriatrics"},"publishedOn":"2025-10-21 16:16:22","publishedOnDateReadable":"October 21st, 2025"},"versionCreatedAt":"2024-11-20 07:38:47","video":"","vorDoi":"10.1186/s12877-025-06324-7","vorDoiUrl":"https://doi.org/10.1186/s12877-025-06324-7","workflowStages":[]},"version":"v1","identity":"rs-5327522","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-5327522","identity":"rs-5327522","version":["v1"]},"buildId":"qtupq5eGEP_6zYnWcrvyt","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}