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Abstract Background Informal care plays an essential role in managing the COVID-19 pandemic. Expanding health insurance packages that reimburse caregivers' services through cost-sharing policies could increase financial resources. Predicting payers' willingness to contribute financially accurately is essential for implementing such a policy. This study aimed to identify the key variables related to WTP/WTA of COVID-19 patients for informal care in Sanandaj city, Iran. Methods This cross-sectional study involved 425 COVID-19 patients in Sanandaj city, Iran, and 23 potential risk factors. We compared the performance of three classifiers based on total accuracy, specificity, sensitivity, negative likelihood ratio, and positive likelihood ratio. Results Findings showed that the average total accuracy of all models was over 70%. Random trees had the most incredible total accuracy for both patient WTA and patient WTP(0.95 and 0.92). Also, the most significant specificity (0.93 and 0.94), sensitivity (0.91 and 0.87), and the lowest negative likelihood ratio (0.193 and 0.19) belonged to this model. According to the random tree model, the most critical factor in patient WTA were patient difficulty in personal activities, dependency on the caregiver, number of caregivers, patient employment, and education, caregiver employment and patient hospitalization history. Also, for WTP were history of COVID-19 death of patient's relatives, and patient employment status. Conclusion Implementing of a more flexible work schedule, encouraging employer to support employee to provide informal care, implementing educational programs to increase patients' efficacy, and providing accurate information could lead to increased patients' willingness to contribute and finally promote health outcomes in the population.

Background: For adults living with HIV (ALHIV) and comorbidities, access to comprehensive healthcare services is crucial to achieving optimal health outcomes. This study aims to describe lived experiences, challenges, and coping strategies for accessing care for hypertension and/or diabetes (HTN/DM) in HIV care and treatment clinics (CTCs) and other healthcare settings. Methodology: We conducted a qualitative study that employed a phenomenological approach between January and April 2022 using a semi-structured interview guide in six HIV CTCs in Dar es Salaam, Tanzania. We purposively recruited 33 ALHIV with HTN (n = 16), DM (n = 10), and both (n = 7). Thematic content analysis was guided by the 5As framework of access to care. Findings: The majority of the participants were females, between the ages of 54–73, and were recruited from regional referral hospitals. HIV CTCs at regional referral hospitals had more consistent provision of HTN screening services compared to those from district hospitals and health centers. Participants sought HTN/DM care at non-CTC health facilities due to the limited availability of such services at HIV CTCs. However, healthcare delivery for these conditions was perceived as unaccommodating and poorly coordinated. The need to attend multiple clinic appointments for the management of HTN/DM in addition to HIV care was perceived as frustrating, time-consuming, and financially burdensome. High costs of care and transportation, limited understanding of comorbidities, and the perceived complexity of HTN/DM care contributed to HTN/DM treatment discontinuity. As a means of coping, participants frequently monitored their own HTN/DM symptoms at home and utilized community pharmacies and dispensaries near their residences to check blood pressure and sugar levels and obtain medications. Participants expressed a preference for non-pharmaceutical approaches to comorbidity management such as lifestyle modification (preferred by young participants) and herbal therapies (preferred by older participants) because of concerns about side effects and perceived ineffectiveness of HTN/DM medications. Participants also preferred integrated care and focused patient education on multimorbidity management at HIV CTCs. Conclusion: Our findings highlight significant barriers to accessing HTN/DM care among ALHIV, mostly related to affordability, availability, and accessibility. Integration of NCD care into HIV CTCs, could greatly improve ALHIV health access and outcomes and align with patient preference. [ABSTRACT FROM AUTHOR]

Background: The studies of hospital resilience have been of increasing importance during the last decade due to disasters and pandemics. However, studies in developing the domain and indicators of hospital resilience were limited mainly on disaster response. A few studies of hospital resilience focused on how to deal with disruptions such as environmental turbulence, rapid technological changes, and changes in patient preferences. This study aims to develop domains and indicators of hospital resilience in facing the disruption era. Methods: This qualitative study focused on exploring the domains and indicators to face disruptions that have been identified in the first exploratory phase of the studies. Key informants included hospital experts from the government, medical practitioners, and academics. A total of 20 key informants were involved in semi-structured interviews which were conducted face-to-face, via telephone and Zoom. Data was analyzed using a grounded theory approach to discover domains for a resilient hospital. Results: The study identified a number of domains that are fundamental for a hospital to become a resilient in the face of disruption. These include readiness to face digital transformation, effective leadership, and flexibility in managing resources among others. Situation awareness and resilience ethos, implementation of marketing management, networking, and disaster anticipation are found to be equally important. These domains focused on the hospital's ability to deal with specific shocks from different perspectives as the result of changes from disruptions which are inevitable within the organizational business environment. Conclusions: The domains identified in the study are able to respond to the limitations of the concept of hospital resilience, which is currently more focused on hospital disaster resilience. They can be used to measure hospital resilience in the context of the volatility, uncertainty, complexity, and ambiguity (VUCA), which are relevant to the context of the Indonesia hospital industry. [ABSTRACT FROM AUTHOR]

Background: Unwarranted practice variation refers to regional differences in treatments that are not driven by patients' medical needs or preferences. Although it is the subject of numerous studies, most research focuses on variation at the end stage of treatment, i.e. the stage of the treating specialist, disregarding variation stemming from other sources (e.g. patient preferences, general practitioner referral patterns). In the present paper, we introduce a method that allows us to measure regional variation at different stages of the patient journey leading up to treatment. Methods: A series of logit regressions estimating the probability of (1) initial visit with the physician and (2) treatment correcting for patient needs and patient preferences. Calculating the coefficient of variation (CVU) at each stage of the patient journey. Results: Our findings show large regional variations in the probability of receiving an initial visit, The CVU, or the measure of dispersion, in the regional probability of an initial visit with a specialist was significantly larger (0.87–0.96) than at the point of treatment both conditional (0.14–0.25) and unconditional on an initial visit (0.65–0.74), suggesting that practice variation was present before the patient reached the specialist. Conclusions: We present a new approach to attribute practice variation to different stages in the patient journey. We demonstrate our method using the clinically-relevant segment of varicose veins treatments. Our findings demonstrate that irrespective of the gatekeeping role of general practitioners (GPs), a large share of practice variation in the treatment of varicose veins is attributable to regional variation in primary care referrals. Contrary to expectation, specialists' decisions meaningfully diminish rather than increase the amount of regional variation. [ABSTRACT FROM AUTHOR]

Abstract Background In Australia, the overall prevalence of liver disease is increasing. Maximising uptake of community screening programmes by understanding patient preferences is integral to developing consumer-centred care models for liver disease. Discrete choice experiments (DCEs) are widely used to elicit preferences for various healthcare services. Attribute development is a vital component of a well-designed DCE and should be described in sufficient detail for others to assess the validity of outcomes. Hence, this study aimed to create a list of potential attributes and levels which can be used in a DCE study to elicit preferences for chronic liver disease screening programmes. Methods Key attributes were developed through a multi-stage, mixed methods design. Focus groups were held with consumers and health care providers on attributes of community screening programmes for liver disease. Stakeholders then prioritised attributes generated from the focus group in order of importance via an online prioritisation survey. The outcomes of the prioritisation exercise were then reviewed and refined by an expert panel to ensure clinically meaningful levels and relevance for a DCE survey. Results Fifteen attributes were generated during the focus group sessions deemed necessary to design liver disease screening services. Outcomes of the prioritisation exercise and expert panel stages recognised five attributes, with three levels each, for inclusion in a DCE survey to elicit consumer preferences for community screening for liver disease. This study also highlights broader social issues such as the stigma around liver disease that require careful consideration by policy makers when designing or implementing a liver screening programme. Conclusions The attributes and levels identified will inform future DCE surveys to understand consumer preferences for community screening programmes for liver disease. In addition, the outcomes will help inform the implementation of the LOCATE-NAFLD programme in real-world practice, and could be relevant for other liver and non-liver related chronic disease screening programmes.

Abstract Background In Iran, tracking of patients and its associated data recording in private healthcare centers are poor, and thus a majority of patients suffering from Covid-19 are treated without any control on the isolation and quarantine processes. The present study aims to investigate the factors contributed to referral to private or public healthcare centers that provide Covid-19 care services. Methods This cross-sectional study was conducted from November 2021 to January 2022 in Tabriz, Iran. We invited a total of 258 and 202Covid-19 patients from governmental and private healthcare centers, respectively, to participate in the study by convenient sampling method. Applying a self-administered questionnaire, we collected data on the reason of referring to the healthcare centers, patient’s waiting time, quality of healthcare services received by the patients, patients’ level of satisfaction, accessibility, insurance coverage, perceived severity of the disease, and the level of staff compliance from health protocols. Logistic regression model was used for data analysis by using SPSS-26 software. Results Adjusted for other variables, higher socio-economic status (AOR (Adjusted Odds Ratio) = 6.64), older age (AOR = 1.02), referral of friends and family members (AOR = 1.52), shorter waiting time (AOR = 1.02) and higher satisfaction (AOR = 1.02) were contributed to referral to private centers. Better accessibility (AOR = 0.98) and wider insurance coverage (AOR = 0.99) were also contributed to referral to governmental centers. Conclusion Providing more appropriate insurance coverage by private healthcare centers, and promoting their level of accessibility seems to promote patients’ referral to such centers. Moreover, establishing an accurate system for recording patients’ information and follow up in private centers might promote the role of private healthcare centers in managing the overload of patients on healthcare system during such epidemics.

Abstract Introduction Outpatient services are crucial for strengthening primary healthcare and reducing out-of-pocket spending, which has been one of the major causes of impoverishment. So it is also critical to comprehend the people’s preferences in accessing primary healthcare facilities, as government primary healthcare facilities in India are underutilized. The current paper explores the factors that construct the individual’s decision to seek outpatient care in primary healthcare facilities in India’s largest state Rajasthan. Methods It was a cross-sectional survey conducted in 72 primary sample units of 24 primary health centers in 11 districts of Rajasthan, India, from November 2019 to January 2020. The study selected 368 households through purposive sampling. Out of 368 households, 460 people reported any illness and 326 reported outpatient visit to any health facility in the last 30 days from the date of the survey. Analysis The focus was on analyzing the data in the context of public and private health facilities to understand the factors influencing people’s choice to access outpatient services. The principal component analysis is used to understand the relationship between facility preparedness and OPD uptake. Also, multivariate logistic regression is applied to assess the significant predictors in using primary health facility services. Result Except for the 29% of patients who received no care, the proportion of patients attended public health facilities was 35%, and the rest were utilizing private health facilities. Those who sought care at PHCs were mostly over 45 years age, non-literate, and from the lowest wealth quintile. Logistic regression suggests that people belong to upper wealth quintile (OR = 0.298; 95% 0.118–0.753) are less likely to visit PHCs for treatment. Also, increase in distance of PHC (OR = 0.203; 95% CI 0.076–0.539) reduces the likelihood of their visit outpatient care. People are 9.7 times (OR = 9.740; 95% CI 2.856–33.217) more likely to visit a PHCs that are better equipped in terms of human resources, equipment, and medicine. Conclusion The uptake of PHCs depends on several factors, which should be considered to ensure that all segments of society have equitable access to them. Through improved accessibility and quality of service, PHCs can be made more appealing to the larger population.

Background: In Australia, the overall prevalence of liver disease is increasing. Maximising uptake of community screening programmes by understanding patient preferences is integral to developing consumer-centred care models for liver disease. Discrete choice experiments (DCEs) are widely used to elicit preferences for various healthcare services. Attribute development is a vital component of a well-designed DCE and should be described in sufficient detail for others to assess the validity of outcomes. Hence, this study aimed to create a list of potential attributes and levels which can be used in a DCE study to elicit preferences for chronic liver disease screening programmes. Methods: Key attributes were developed through a multi-stage, mixed methods design. Focus groups were held with consumers and health care providers on attributes of community screening programmes for liver disease. Stakeholders then prioritised attributes generated from the focus group in order of importance via an online prioritisation survey. The outcomes of the prioritisation exercise were then reviewed and refined by an expert panel to ensure clinically meaningful levels and relevance for a DCE survey. Results: Fifteen attributes were generated during the focus group sessions deemed necessary to design liver disease screening services. Outcomes of the prioritisation exercise and expert panel stages recognised five attributes, with three levels each, for inclusion in a DCE survey to elicit consumer preferences for community screening for liver disease. This study also highlights broader social issues such as the stigma around liver disease that require careful consideration by policy makers when designing or implementing a liver screening programme. Conclusions: The attributes and levels identified will inform future DCE surveys to understand consumer preferences for community screening programmes for liver disease. In addition, the outcomes will help inform the implementation of the LOCATE-NAFLD programme in real-world practice, and could be relevant for other liver and non-liver related chronic disease screening programmes. [ABSTRACT FROM AUTHOR]

COVID Watch is a remote patient monitoring program implemented during the pandemic to support home dwelling patients with COVID-19. The program conferred a large survival advantage. We conducted semi-structured interviews of 85 patients and clinicians using COVID Watch to understand how to design such programs even better. Patients and clinicians found COVID Watch to be comforting and beneficial, but both groups desired more clarity about the purpose and timing of enrollment and alternatives to text-messages to adapt to patients' preferences as these may have limited engagement and enrollment among marginalized patient populations. Because inclusiveness and equity are important elements of programmatic success, future programs will need flexible and multi-channel human-to-human communication pathways for complex clinical interactions or for patients who do not desire tech-first approaches. [ABSTRACT FROM AUTHOR]

Background: In Iran, tracking of patients and its associated data recording in private healthcare centers are poor, and thus a majority of patients suffering from Covid-19 are treated without any control on the isolation and quarantine processes. The present study aims to investigate the factors contributed to referral to private or public healthcare centers that provide Covid-19 care services. Methods: This cross-sectional study was conducted from November 2021 to January 2022 in Tabriz, Iran. We invited a total of 258 and 202Covid-19 patients from governmental and private healthcare centers, respectively, to participate in the study by convenient sampling method. Applying a self-administered questionnaire, we collected data on the reason of referring to the healthcare centers, patient's waiting time, quality of healthcare services received by the patients, patients' level of satisfaction, accessibility, insurance coverage, perceived severity of the disease, and the level of staff compliance from health protocols. Logistic regression model was used for data analysis by using SPSS-26 software. Results: Adjusted for other variables, higher socio-economic status (AOR (Adjusted Odds Ratio) = 6.64), older age (AOR = 1.02), referral of friends and family members (AOR = 1.52), shorter waiting time (AOR = 1.02) and higher satisfaction (AOR = 1.02) were contributed to referral to private centers. Better accessibility (AOR = 0.98) and wider insurance coverage (AOR = 0.99) were also contributed to referral to governmental centers. Conclusion: Providing more appropriate insurance coverage by private healthcare centers, and promoting their level of accessibility seems to promote patients' referral to such centers. Moreover, establishing an accurate system for recording patients' information and follow up in private centers might promote the role of private healthcare centers in managing the overload of patients on healthcare system during such epidemics. [ABSTRACT FROM AUTHOR]

Introduction: Outpatient services are crucial for strengthening primary healthcare and reducing out-of-pocket spending, which has been one of the major causes of impoverishment. So it is also critical to comprehend the people's preferences in accessing primary healthcare facilities, as government primary healthcare facilities in India are underutilized. The current paper explores the factors that construct the individual's decision to seek outpatient care in primary healthcare facilities in India's largest state Rajasthan. Methods: It was a cross-sectional survey conducted in 72 primary sample units of 24 primary health centers in 11 districts of Rajasthan, India, from November 2019 to January 2020. The study selected 368 households through purposive sampling. Out of 368 households, 460 people reported any illness and 326 reported outpatient visit to any health facility in the last 30 days from the date of the survey. Analysis: The focus was on analyzing the data in the context of public and private health facilities to understand the factors influencing people's choice to access outpatient services. The principal component analysis is used to understand the relationship between facility preparedness and OPD uptake. Also, multivariate logistic regression is applied to assess the significant predictors in using primary health facility services. Result: Except for the 29% of patients who received no care, the proportion of patients attended public health facilities was 35%, and the rest were utilizing private health facilities. Those who sought care at PHCs were mostly over 45 years age, non-literate, and from the lowest wealth quintile. Logistic regression suggests that people belong to upper wealth quintile (OR = 0.298; 95% 0.118–0.753) are less likely to visit PHCs for treatment. Also, increase in distance of PHC (OR = 0.203; 95% CI 0.076–0.539) reduces the likelihood of their visit outpatient care. People are 9.7 times (OR = 9.740; 95% CI 2.856–33.217) more likely to visit a PHCs that are better equipped in terms of human resources, equipment, and medicine. Conclusion: The uptake of PHCs depends on several factors, which should be considered to ensure that all segments of society have equitable access to them. Through improved accessibility and quality of service, PHCs can be made more appealing to the larger population. [ABSTRACT FROM AUTHOR]

Abstract Background In patient choice, patients are expected to select the provider that best fits their preferences. In this study, we assess to what extent the hospital choice of patients in practice corresponds with their preferred choice. Methods Dutch patients with breast cancer (n = 631) and cataract (n = 1109) were recruited. We employed a discrete choice experiment (DCE) per condition to measure stated preferences and predict the distribution of patients across four hospitals. Each DCE included five attributes: patient experiences, a clinical outcome indicator, waiting time, travel distance and whether the hospital had been recommended (e.g., by the General Practitioner (GP)). Revealed choices were derived from claims data. Results Hospital quality was valued as most important in the DCE; the largest marginal rates of substitution (willingness to wait) were observed for the clinical outcome indicator (breast cancer: 38.6 days (95% confidence interval (95%CI): 32.9–44.2); cataract: 210.5 days (95%CI: 140.8–280.2)). In practice, it was of lesser importance. In revealed choices, travel distance became the most important attribute; it accounted for 85.5% (breast cancer) and 95.5% (cataract) of the log-likelihood. The predicted distribution of patients differed from that observed in practice in terms of absolute value and, for breast cancer, also in relative order. Similar results were observed in population weighted analyses. Discussion Study findings show that patients highly valued quality information in the choice for a hospital. However, in practice these preferences did not prevail. Our findings suggest that GPs played a major role and that patients mostly ended up selecting the nearest hospital.

Background: Learning what matters to women/couples with recurrent miscarriage (RM) is essential to inform service improvement efforts and future RM care practices. Previous national and international surveys have examined inpatient stays, maternity care, and care experiences around pregnancy loss, but there is little focus on RM care. We aimed to explore the experiences of women and men who have received RM care and identify patient-centred care items linked to overall RM care experience. Methods: Between September and November 2021, we invited people who had experienced two or more consecutive first trimester miscarriages and received care for RM in Ireland in the ten-year period prior to participate in a cross-sectional web-based national survey. The survey was purposefully designed and administered via Qualtrics. It included questions on sociodemographics, pregnancy and pregnancy loss history, investigation and treatment for RM, overall RM care experience, and patient-centred care items at various stages of the RM care pathway such as respect for patients' preferences, information and support, the environment, and involvement of partners/family. We analysed data using Stata. Results: We included 139 participants (97% women, n = 135) in our analysis. Of the 135 women, 79% were aged 35–44 years (n = 106), 24% rated their overall RM care experience as poor (n = 32), 36% said the care they received was much worse than expected (n = 48), and 60% stated health care professionals in different places did not work well together (n = 81). Women were more likely to rate a good care experience if they had a healthcare professional to talk to about their worries/fears for RM investigations (RRR 6.11 [95% CI: 1.41–26.41]), received a treatment plan (n = 70) (RRR 3.71 [95% CI: 1.28–10.71]), and received answers they could understand in a subsequent pregnancy (n = 97) (RRR 8 [95% CI: 0.95–67.13]). Conclusions: While overall experience of RM care was poor, we identified areas that could potentially improve people's RM care experiences – which have international relevance – such as information provision, supportive care, communication between healthcare professionals and people with RM, and care coordination between healthcare professionals across care settings. [ABSTRACT FROM AUTHOR]

Background: Diabetes mellitus, cardiovascular diseases, chronic kidney disease, and thyroid diseases are chronic diseases that require regular monitoring through blood tests. This paper first investigates the experiences of chronic care patients with venipuncture and their expectations of an at-home blood-sampling device, and then assesses the impact on societal costs of implementing such a device in current practice. Methods: An online survey was distributed among chronic care patients to gain insight into their experience of blood sampling in current practice, and their expectations of an at-home blood-sampling device. The survey results were used as input parameters in a patient-level monte carlo analysis developed to represent a hypothetical cohort of Dutch chronically ill patients to investigate the impact on societal costs compared to usual care. Results: In total, 1311 patients participated in the survey, of which 31% experience the time spent on the phlebotomy appointment as a burden. Of all respondents, 71% prefer to use an at-home blood-sampling device to monitor their chronic disease. The cost analysis indicated that implementing an at-home blood-sampling device increases the cost of phlebotomy itself by €27.25 per patient per year, but it reduces the overall societal costs by €24.86 per patient per year, mainly due to limiting productivity loss. Conclusions: Patients consider an at-home blood-sampling device to be more user-friendly than venous phlebotomy on location. Long waiting times and crowded locations can be avoided by using an at-home blood-sampling device. Implementing such a device is likely cost-saving as it is expected to reduce societal costs. [ABSTRACT FROM AUTHOR]

Objective: The Department of Veterans Affairs' (VA) electronic health records (EHR) offer a rich source of big data to study medical and health care questions, but patient eligibility and preferences may limit generalizability of findings. We therefore examined the representativeness of VA veterans by comparing veterans using VA healthcare services to those who do not. Methods: We analyzed data on 3051 veteran participants age ≥ 18 years in the 2019 National Health Interview Survey. Weighted logistic regression was used to model participant characteristics, health conditions, pain, and self-reported health by past year VA healthcare use and generate predicted marginal prevalences, which were used to calculate Cohen's d of group differences in absolute risk by past-year VA healthcare use. Results: Among veterans, 30.4% had past-year VA healthcare use. Veterans with lower income and members of racial/ethnic minority groups were more likely to report past-year VA healthcare use. Health conditions overrepresented in past-year VA healthcare users included chronic medical conditions (80.6% vs. 69.4%, d = 0.36), pain (78.9% vs. 65.9%; d = 0.35), mental distress (11.6% vs. 5.9%; d = 0.47), anxiety (10.8% vs. 4.1%; d = 0.67), and fair/poor self-reported health (27.9% vs. 18.0%; d = 0.40). Conclusions: Heterogeneity in veteran sociodemographic and health characteristics was observed by past-year VA healthcare use. Researchers working with VA EHR data should consider how the patient selection process may relate to the exposures and outcomes under study. Statistical reweighting may be needed to generalize risk estimates from the VA EHR data to the overall veteran population. [ABSTRACT FROM AUTHOR]

Abstract Background Second medical opinions (SOs) can assist patients in making informed treatment decisions and improve the understanding of their diagnosis. In Germany, there are different approaches to obtain a structured SO procedure: SO programs by health insurers and SOs according to the SO Directive. Through a direct survey of the population, we aimed to assess how structured SOs should be provided to fulfil patients’ needs. Methods A stratified sample of 9990 adults (≥18 years) living in the federal states of Berlin and Brandenburg (Germany) were initially contacted by post in April and sent a reminder in May 2020. The survey results were analyzed descriptively. Results Among 1349 participants (response rate 14%), 56% were female and the median age was 58 years (interquartile range (IQR) 44–69). Participants wanted to be informed directly and personally about the possibility of obtaining an SO (89%; 1201/1349). They preferred to be informed by their physician (93%; 1249/1349). A majority of participants would consider it important to obtain an SO for oncological indications (78%; 1049/1349). Only a subset of the participants would seek an SO via their health insurer or via an online portal (43%; 577/1349 and 16%; 221/1349). A personally delivered SO was the preferred route of SO delivery, as 97% (1305/1349) would (tend to) consider this way of obtaining an SO. Participants were asked to imagine having moderate knee pain for years, resulting in a treatment recommendation for knee joint replacement. They were requested to rate potential qualification criteria for a physician providing the SO. The criteria rated to be most important were experience with the recommended diagnosis/treatment (criterion (very) important for 93%; 1257/1349) and knowledge of the current state of research (criterion (very) important for 86%; 1158/1349). Participants were willing to travel 60 min (median; IQR 60–120) and wait 4 weeks (median; IQR 2–4) for their SO in the hypothetical case of knee pain. Conclusion In general, SOs were viewed positively. We found that participants have clear preferences regarding SOs. We propose that these preferences should be taken into account in the future design and development of SO programs.

Abstract Background Understanding patient preferences in emergency departments (EDs) can provide useful information to enhance patient-centred care and improve patient’s experience in hospitals. This study sought to find evidence about patients’ preference for physicians when receiving services in EDs in Iran. Methods In this discrete choice experiment survey, 811 respondents completed the scenarios with 5 attributes, including type of physicians, price of services, time to receive services, physician work experience, and physician responsibility. Analyses were conducted for different social and economic groups as well as for the total population. Results This study showed that the willingness to pay (WTP) for being visited by a physician with a high sense of responsibility was 67.104US$. WTP for being visited by an emergency medicine specialist (EMS) was 22.148US$. WTP for receiving ED services 1 min earlier was 0.417US$ and for being visited by 1 year higher experienced physician was 0.866US$. WTP varied across different age groups, sex, health status, education, and income groups. Conclusion As the expertise and experience of providers are important factors in selecting physicians in EDs by the patients, providing this information to patients when they want to select their providers can promote patient-centred care. This information can decrease patients’ uncertainty in the selection of their services and improve their experience in hospitals.

Background: In patient choice, patients are expected to select the provider that best fits their preferences. In this study, we assess to what extent the hospital choice of patients in practice corresponds with their preferred choice.Methods: Dutch patients with breast cancer (n = 631) and cataract (n = 1109) were recruited. We employed a discrete choice experiment (DCE) per condition to measure stated preferences and predict the distribution of patients across four hospitals. Each DCE included five attributes: patient experiences, a clinical outcome indicator, waiting time, travel distance and whether the hospital had been recommended (e.g., by the General Practitioner (GP)). Revealed choices were derived from claims data.Results: Hospital quality was valued as most important in the DCE; the largest marginal rates of substitution (willingness to wait) were observed for the clinical outcome indicator (breast cancer: 38.6 days (95% confidence interval (95%CI): 32.9-44.2); cataract: 210.5 days (95%CI: 140.8-280.2)). In practice, it was of lesser importance. In revealed choices, travel distance became the most important attribute; it accounted for 85.5% (breast cancer) and 95.5% (cataract) of the log-likelihood. The predicted distribution of patients differed from that observed in practice in terms of absolute value and, for breast cancer, also in relative order. Similar results were observed in population weighted analyses.Discussion: Study findings show that patients highly valued quality information in the choice for a hospital. However, in practice these preferences did not prevail. Our findings suggest that GPs played a major role and that patients mostly ended up selecting the nearest hospital. [ABSTRACT FROM AUTHOR]

Background: There is an urgent need to understand the determinants (i.e., barriers and facilitators) of de-implementation. The purpose of this study was to develop a comprehensive list of determinants of the de-implementation of low-value care from the published literature and to compare this list to determinants identified by a group of stakeholders with lived experience with de-implementation. Methods: This was a two-phase multi-method study. First, a systematic review examined published barriers and facilitators to de-implementation. Articles were identified through searches within electronic databases, reference lists and the grey literature. Citations were screened independently and in duplicate and included if they were: 1) written in English; and 2) described a barrier or facilitator to de-implementation of any clinical practice in adults (age = 18 years). 'Raw text' determinants cited within included articles were extracted and synthesized into a list of representative determinants using conventional content analysis. Second, semi-structured interviews were conducted with decision-makers (unit managers and medical directors) and healthcare professionals working in adult critical care medicine to explore the overlap between the determinants found in the systematic review to those experienced in critical care medicine. Thematic content analysis was used to identify key themes emerging from the interviews. Results: In the systematic review, reviewers included 172 articles from 35,368 unique citations. From 437 raw text barriers and 280 raw text facilitators, content analysis produced 29 distinct barriers and 24 distinct facilitators to de-implementation. Distinct barriers commonly cited within raw text included 'lack of credible evidence to support de-implementation' (n = 90, 21%), 'entrenched norms and clinicians' resistance to change (n = 43, 21%), and 'patient demands and preferences' (n = 28, 6%). Distinct facilitators commonly cited within raw text included 'stakeholder collaboration and communication' (n = 43, 15%), and 'availability of credible evidence' (n = 33, 12%). From stakeholder interviews, 23 of 29 distinct barriers and 20 of 24 distinct facilitators from the systematic review were cited as key themes relevant to de-implementation in critical care. Conclusions: The availability and quality of evidence that identifies a clinical practice as low-value, as well as healthcare professional willingness to change, and stakeholder collaboration are common and important determinants of de-implementation and may serve as targets for future de-implementation initiatives. [ABSTRACT FROM AUTHOR]

Abstract Background Allogeneic hematopoietic stem cell transplantation (alloHSCT) is the only potentially curative treatment option for many patients with hematological disorders but it includes a significant risk of mortality and long-term morbidity. Many patients and their support persons feel overwhelmed when being informed about alloHSCT and may benefit from improvements in consultation style and timing. Aims To explore, qualitatively, in a sample of hematological cancer patients and their support persons, their preferences for receiving one longer consultation or two shorter consultations when being informed about alloHSCT. Participants’ perceptions of when and how different consultation styles should be offered were also examined. Methods Semi-structured face-to-face and phone interviews were conducted. A purposeful sampling frame was used. Data were analysed using framework analysis. Results Twenty patients and 13 support persons were recruited (consent rate: 96%, response rate: 91%). Most patients (60%) and support persons (62%) preferred two shorter consultations over one longer consultation. This helped them digest and recall the information provided, remember questions they had, involve significant others and search for additional information. Patients would have liked to be offered paper and pen to take notes, take a break after 30 min and have their understanding checked at the end of the first consultation, e.g. using question prompt lists. Some patients and support persons preferred both consultations to happen on the same day to reduce waiting times as well as travel times and costs. Others preferred having a few days in-between both consultations to better help them prepare the second consultation. Participants reported varying preferences for different consultation styles depending on personal and disease-related characteristics, such as age, health literacy level and previous treatment. Conclusion To our knowledge, this is the first qualitative study to explore patients’ and their support persons’ preferences for having one longer consultation or two shorter consultations when being informed about alloHSCT. Receiving two shorter consultations may help patients process and recall the information provided and more actively involve their support persons. Clinicians should consider offering patients and their support persons to take a break after 30 min, provide paper and pen as well as question prompt lists.

Background: The advent of all-oral regimens for the management of multi-drug resistant tuberculosis (MDR-TB) makes the implementation of community-based directly observed therapy (CB-DOT) a possibility for this group of patients. We set out to determine patient preferences for different attributes of a community-based model for the management of MDR-TB in Uganda.Methods: The study was conducted at five tertiary referral hospitals. We used a parallel convergent mixed methods study design. To collect quantitative data, we conducted a discrete choice experiment (DCE) with three different attributes of community-based care (DOT provider, location of care, and type of support) combined into eight choice sets, each with two options and an opt-out. We elicited patient reasons for selection of each choice set using qualitative methods. We fitted a mixed logit choice model to determine patient preferences for different attributes of community-based care and estimated the relative importance of each attribute using the range method. and used deductive thematic analysis to understand the reasons for the choices made.Results: From December 2019 to January 2020, we interviewed 103 patients with MDR-TB. We found that all the three attributes considered were important predicators of choice. The relative importance of each attribute was as follows; the type of additional support (relative importance 36.2%), the location of treatment delivery (33.5%), and the type of DOT provider (30.3%). Participants significantly valued treatment delivered by community health workers (CHWs) or expert clients over that delivered by a family member, treatment delivered at home over that delivered at the workplace, and monthly travel vouchers as the form of additional support over phone call or SMS reminders. Subgroup analyses showed significant differences in preference across HIV status, age groups and duration on MDR-TB treatment, but not across gender. The preferred model consisted of a CHW giving DOT at home and travel vouchers to enable attendance of monthly clinic follow-up visits to tertiary referral hospitals for treatment monitoring. Qualitative interviews revealed that patients perceived CHWs as knowledgeable and able to offer psychosocial support. Patients also preferred to take medication at home to save both time and money and lower the risk of facing TB stigma.Conclusion: People with MDR-TB prefer to be supported to take their medicine at home by a member of their community. The effectiveness of this model of care is being further evaluated. [ABSTRACT FROM AUTHOR]

Background: Second medical opinions (SOs) can assist patients in making informed treatment decisions and improve the understanding of their diagnosis. In Germany, there are different approaches to obtain a structured SO procedure: SO programs by health insurers and SOs according to the SO Directive. Through a direct survey of the population, we aimed to assess how structured SOs should be provided to fulfil patients' needs.Methods: A stratified sample of 9990 adults (≥18 years) living in the federal states of Berlin and Brandenburg (Germany) were initially contacted by post in April and sent a reminder in May 2020. The survey results were analyzed descriptively.Results: Among 1349 participants (response rate 14%), 56% were female and the median age was 58 years (interquartile range (IQR) 44-69). Participants wanted to be informed directly and personally about the possibility of obtaining an SO (89%; 1201/1349). They preferred to be informed by their physician (93%; 1249/1349). A majority of participants would consider it important to obtain an SO for oncological indications (78%; 1049/1349). Only a subset of the participants would seek an SO via their health insurer or via an online portal (43%; 577/1349 and 16%; 221/1349). A personally delivered SO was the preferred route of SO delivery, as 97% (1305/1349) would (tend to) consider this way of obtaining an SO. Participants were asked to imagine having moderate knee pain for years, resulting in a treatment recommendation for knee joint replacement. They were requested to rate potential qualification criteria for a physician providing the SO. The criteria rated to be most important were experience with the recommended diagnosis/treatment (criterion (very) important for 93%; 1257/1349) and knowledge of the current state of research (criterion (very) important for 86%; 1158/1349). Participants were willing to travel 60 min (median; IQR 60-120) and wait 4 weeks (median; IQR 2-4) for their SO in the hypothetical case of knee pain.Conclusion: In general, SOs were viewed positively. We found that participants have clear preferences regarding SOs. We propose that these preferences should be taken into account in the future design and development of SO programs. [ABSTRACT FROM AUTHOR]

Abstract Background Medicines are one of the most common healthcare interventions, yet evidence shows patients often do not receive the information they want about their medicines. This affects their adherence and healthcare engagement. There is limited research exploring what information patients want about their medicines, from whom and in what format. The aim of this study was to determine the medicines information needs of patients admitted to the general medical service of a large New Zealand (NZ) hospital, and identify the barriers and enablers to meeting these needs. Methods A descriptive exploratory approach using semi-structured interviews was used to understand the needs and preferences of patients for information about their regular medicines and the barriers and facilitators to obtaining this information. Patients admitted to a general medical ward at a large NZ hospital, aged 18 years and over, prescribed one or more regular medicines, and self-managing their own medicines prior to hospitalisation were included. Semi-structured interviews were conducted with each participant (n = 30) and transcribed, then analysed using a general inductive thematic analysis approach. Results Five overarching themes captured the medicines information needs of patients: (1) autonomy; (2) fostering relationships; (3) access; (4) communication; and (5) minimal information needs. Patients desired information to facilitate their decision-making and self-management of their health. Support people, written information, and having good relationships with health providers enabled this. Having access to information at the right time, communicated in a clear and consistent way with opportunities for follow-up, was important. A significant portion of participants were satisfied with receiving minimal information and had no expectations of needing more medicines information. Conclusions Although patients’ medicines information needs varied between individuals, the importance of receiving information in an accessible, timely manner, and having good relationships with health providers, were common to most. Considering these needs is important to optimise information delivery in general medical patients.

Abstract Background The substantial prevalence and consequences of intimate partner violence (IPV) underscore the need for effective healthcare response in the way of screening and follow up care. Despite growing evidence regarding perspectives on healthcare-based screening for IPV experiences (i.e., victimization), there is an extremely limited evidence-base to inform practice and policy for detecting IPV use (i.e., perpetration). This study identified barriers, facilitators, and implementation preferences among United States (US) Veterans Health Administration (VHA) patients and providers for IPV use screening. Methods We conducted qualitative interviews with patients enrolled in VHA healthcare (N = 10) and focus groups with VHA providers across professional disciplines (N = 29). Data was analyzed using thematic and content analyses. Results Qualitative analysis revealed convergence between patients’ and providers’ beliefs regarding key factors for IPV use screening, including the importance of a strong rapport, clear and comprehensive processes and procedures, universal implementation of screening, and a self-report screening tool that assesses for both IPV use and experiences concurrently. Conclusions Findings provide foundational information regarding patient and provider barriers, facilitators, and preferences for IPV use screening that can inform clinical practice and next steps in this important but understudied aspect of healthcare.

Abstract Background Although patient participation is strongly associated with high quality of healthcare, valid means to measure and report a comprehensive notion of patient participation are scarce. The Patient Preferences for Patient Participation (4Ps) is a new healthcare practice and research tool, comprising patients’ preferences as well as experiences. The 4Ps employs 12 items for the patient to conceptualise patient participation. The aim of this paper is to describe how the two perspectives of patient participation, namely preferences and experiences, can be combined to visualise and report preference-based patient participation. Methods With four response alternatives in each section, the 4Ps offers sixteen possible combinations of degree of match per item. Theoretical and clinical principles fostered a tentative order of six ranks and three levels of preference-based patient participation. To test the standard, statistical analyses for ordinal data were performed, using data from a randomised controlled trial evaluating an intervention aiming to improve patient participation. Further, structures for visualising the preference-based patient participation of individuals and groups were suggested. Results Data from the 4Ps demonstrated the individuals’ preference-based patient participation, indicating either a match or a mismatch for each item. Mismatches represented either the experience of participation surpassing the patient’s preferences, or the patient’s preferences for patient participation not being established. At group level, the suggested approach for visualising and reporting the 4Ps demonstrated that the intervention group had a significantly higher proportion of sufficient preference-based patient participation for certain items than the control group. These results had not been identified earlier, when using the preferences and experiences of patient participation as separate measures. Conclusions Ways to easily acquaint stakeholders with patients’ preferences for patient participation are needed, in order for healthcare staff to better use resources to match the basic requirements of individuals and groups. While the 4Ps can guide professionals to patient participation as framed in legislations, concept analyses and by patients, a visualisation of the results is needed to capture preference-based patient participation. The proposed route to representing degree of match in preferences and experiences may also be relevant to other dimensions of quality of healthcare.

Abstract Background Guidelines based on patient preferences differ from those developed solely by clinicians and may promote patient adherence to guideline recommendations. There is scant evidence on how to develop patient-informed guidelines. This study aimed to describe how guideline developers identify, incorporate and report patient preferences. Methods We employed a descriptive cross-sectional survey design. Eligible organizations were non-profit agencies who developed at least one guideline in the past five years and had considered patient preferences in guideline development. We identified developers through the Guidelines International Network and publicly-available guideline repositories, administered the survey online, and used summary statistics to report results. Results The response rate was 18.3% (52/284). Respondents included professional societies, and government, academic, charitable and healthcare delivery organizations from 18 countries with at least 1 to ≥6 years of experience generating patient-informed guidelines. Organizations most frequently identified preferences through patient panelists (86.5%) and published research (84.6%). Most organizations (48, 92.3%) used multiple approaches to identify preferences (median 3, range 1 to 5). Most often, organizations used preferences to generate recommendations (82.7%) or establish guideline questions (73.1%). Few organizations explicitly reported preferences; instead, they implicitly embedded preferences in guideline recommendations (82.7%), questions (73.1%), or point-of-care communication tools (61.5%). Most developers had little capacity to generate patient-informed guidelines. Few offered training to patients (30.8%), or had dedicated funding (28.9%), managers (9.6%) or staff (9.6%). Respondents identified numerous barriers to identifying preferences. They also identified processes, resources and clinician- and patient-strategies that can facilitate the development of patient-informed guidelines. In contrast to identifying preferences, developers noted few approaches for, or barriers or facilitators of incorporating or reporting preferences. Conclusions Developers emphasized the need for knowledge on how to identify, incorporate and report patient preferences in guidelines. In particular, how to use patient preferences to formulate recommendations, and transparently report patient preferences and the influence of preferences on guidelines is unknown. Still, insights from responding developers may help others who may be struggling to generate guidelines informed by patient preferences.

Abstract Background Cancer patients experience psychological and social distress due to their medical treatment and social issues. However, continuous and specialized social support is still lacking. In Germany, a group of company health insurance funds has developed an approach to support cancer patients with monthly structured interviews conducted by specially trained Social Care Nurses. The nurses will identify patient needs in order to provide help with medical, personal, and social matters. One aim of the scientific evaluation is to analyze the effect of the consultations on various patient-reported outcomes, especially quality of life. The evaluation concept will be described in this study protocol. Methods/design The evaluation is a non-randomized, controlled, multi-center intervention study with a mixed-method design. It consists of three research modules which include primary data from questionnaires, and claims data from the health insurance funds. In Module 1, cancer patients will be recruited to form an intervention group (OSCAR, n = 150) and a control group (n = 200) in four study centers for a period of 1 year. One baseline and three follow-up questionnaires will be conducted to survey the patient-reported outcomes. Relevant secondary outcomes are health literacy, participation, and physician-patient communication. In Module 2, claims data will be used to analyze cost effects and thereby assess effectivity and hospitalization. Module 3 will involve a qualitative analysis of project diaries kept by the Social Care Nurses. The diaries will record the nurses’ practical experiences and the benefits of deploying OSCAR across the German healthcare system. Discussion OSCAR is an innovative way of providing cancer patients with continuous support to improve their quality of life. The evaluation concept aims to assess the effects of the monthly consultations by the Social Care Nurses on the patients, and will use a mixed-method design. The results are important for assessing the transferability of OSCAR to the healthcare system as a whole. Trial registration German Clinical Trials Register (DRKS-ID: DRKS00013640). Registered 29 December 2017.

Background: Allogeneic hematopoietic stem cell transplantation (alloHSCT) is the only potentially curative treatment option for many patients with hematological disorders but it includes a significant risk of mortality and long-term morbidity. Many patients and their support persons feel overwhelmed when being informed about alloHSCT and may benefit from improvements in consultation style and timing.Aims: To explore, qualitatively, in a sample of hematological cancer patients and their support persons, their preferences for receiving one longer consultation or two shorter consultations when being informed about alloHSCT. Participants' perceptions of when and how different consultation styles should be offered were also examined.Methods: Semi-structured face-to-face and phone interviews were conducted. A purposeful sampling frame was used. Data were analysed using framework analysis.Results: Twenty patients and 13 support persons were recruited (consent rate: 96%, response rate: 91%). Most patients (60%) and support persons (62%) preferred two shorter consultations over one longer consultation. This helped them digest and recall the information provided, remember questions they had, involve significant others and search for additional information. Patients would have liked to be offered paper and pen to take notes, take a break after 30 min and have their understanding checked at the end of the first consultation, e.g. using question prompt lists. Some patients and support persons preferred both consultations to happen on the same day to reduce waiting times as well as travel times and costs. Others preferred having a few days in-between both consultations to better help them prepare the second consultation. Participants reported varying preferences for different consultation styles depending on personal and disease-related characteristics, such as age, health literacy level and previous treatment.Conclusion: To our knowledge, this is the first qualitative study to explore patients' and their support persons' preferences for having one longer consultation or two shorter consultations when being informed about alloHSCT. Receiving two shorter consultations may help patients process and recall the information provided and more actively involve their support persons. Clinicians should consider offering patients and their support persons to take a break after 30 min, provide paper and pen as well as question prompt lists. [ABSTRACT FROM AUTHOR]

Background: In designing, adapting, and integrating mental health interventions, it is pertinent to understand patients' needs and their own perceptions and values in receiving care. Conjoint analysis (CA) and discrete choice experiments (DCEs) are survey-based preference-elicitation approaches that, when applied to healthcare settings, offer opportunities to quantify and rank the healthcare-related choices of patients, providers, and other stakeholders. However, a knowledge gap exists in characterizing the extent to which DCEs/CA have been used in designing mental health services for patients and providers.Methods: We performed a scoping review from the past 20 years (2009-2019) to identify and describe applications of conjoint analysis and discrete choice experiments. We searched the following electronic databases: Pubmed, CINAHL, PsychInfo, Embase, Cochrane, and Web of Science to identify stakehold,er preferences for mental health services using Mesh terms. Studies were categorized according to pertaining to patients, providers and parents or caregivers.Results: Among the 30 studies we reviewed, most were published after 2010 (24/30, 80%), the majority were conducted in the United States (11/30, 37%) or Canada (10/30, 33%), and all were conducted in high-income settings. Studies more frequently elicited preferences from patients or potential patients (21/30, 70%) as opposed to providers. About half of the studies used CA while the others utilized DCEs. Nearly half of the studies sought preferences for mental health services in general (14/30, 47%) while a quarter specifically evaluated preferences for unipolar depression services (8/30, 27%). Most of the studies sought stakeholder preferences for attributes of mental health care and treatment services (17/30, 57%).Conclusions: Overall, preference elicitation approaches have been increasingly applied to mental health services globally in the past 20 years. To date, these methods have been exclusively applied to populations within the field of mental health in high-income countries. Prioritizing patients' needs and preferences is a vital component of patient-centered care - one of the six domains of health care quality. Identifying patient preferences for mental health services may improve quality of care and, ultimately, increase acceptability and uptake of services among patients. Rigorous preference-elicitation approaches should be considered, especially in settings where mental health resources are scarce, to illuminate resource allocation toward preferred service characteristics especially within low-income settings. [ABSTRACT FROM AUTHOR]

Background: Few European smokers receive professional counselling when attempting to quit smoking, resulting in suboptimal success rates and poor health outcomes. Healthcare providers in general practice play an important role in referring smokers to smoking cessation counselling. We chose the Netherlands as a case study to qualitatively explore which factors play a role among healthcare providers in general practice with regard to referral for smoking cessation counselling organised both inside and outside general practice.Methods: We conducted four focus groups and 18 telephone interviews, with a total of 31 healthcare providers who work in general practice. Qualitative content analysis was used to identify relevant factors related to referral behaviours, and each factor was linked to one of the three main components of the COM-B behaviour model (i.e., capability, opportunity and motivation) as well as the six sub-components of the model.Results: Dutch healthcare providers in general practice typically refer smokers who want to quit to counselling inside their own general practice without actively discussing other counselling options, indicating a lack of shared decision making. The analysis showed that factors linked to the COM-B main components 'capability' and 'opportunity', such as healthcare providers' skills and patients' preferences, play a role in whether patients are referred to counselling inside general practice. Factors linked to all three COM-B components were found to play a role in referrals to counselling outside general practice. These included (knowledge of) the availability and quality of counselling in the region, patients' requests, reimbursement, and sense of urgency to refer. The identified factors can both act as barriers and facilitators.Conclusions: The findings of this research suggest that more smokers can be reached with smoking cessation counselling if implementation interventions focus on: (i) equipping healthcare providers with the knowledge and skills needed to refer patients; (ii) creating more opportunities for healthcare providers to refer patients (e.g., by improving the availability and reimbursement of counselling options); and (iii) motivating healthcare providers to discuss different counselling options with patients. [ABSTRACT FROM AUTHOR]

Background: Quality improvement (QI) initiatives are increasingly used to improve the quality of care and reduce prescribing errors. The Royal College of General Practitioners (RCGP) and Clinical Practice Research Datalink (CPRD) QI initiative uses routinely collected electronic primary care data to provide bespoke practice-level reports on prescribing safety. The aim of this study was to explore how the QI reports were used, barriers and facilitators to use, long-term culture change and perceived impact on patient care and practices systems as a result of receiving the reports.Methods: A qualitative study using purposive sampling of practices contributing to the CPRD, semi-structured interviews and inductive thematic analysis. We interviewed general practitioners, pharmacists, practice managers and research nurses.Results: We conducted 18 interviews, and organised themes summarising the use of QI reports in practice: receiving the report, facilitators and barriers to acting upon the reports, acting upon the report, and how the reports contribute to a quality culture. Effective dissemination of reports, and a positive attitude to audit and the perceived relevance of the clinical topic facilitated use. Lack of time and failure to see or act upon the reports meant they were not used. Factors influencing use of the reports included the structure of the report, ease of identifying cases, and perceptions about coding accuracy. GPs and pharmacists used the reports to conduct case reviews and directly contact patients to discuss unsafe prescribing and patient medication preferences. Finally, the reports contributed to the development of a quality culture within practices through promoting audit activity and acting as a reminder of good prescribing behaviours, promoting future patient safety initiatives, contributing to continuing professional development and improving local networks.Conclusions: This study found the reports facilitated individual case review leading to an enhanced sense of quality culture in practices where they were utilised. Our findings demonstrate that the reports were generally considered useful and have been used to support patient safety and clinical practice in specific cases. [ABSTRACT FROM AUTHOR]

Abstract Background The number of type 2 diabetes mellitus (T2DM) patients and related treatment costs are rapidly increasing. Consequentially, more cost-effective and efficient strategies for the treatment of T2DM are needed. One such strategy is improving patients’ self-management. As patients are more and more expected to self-manage their disease, it is important to provide them with suitable self-management support. This way, success of self-management will increase and complications and related costs of T2DM can be reduced. Currently, self-management support is developed mainly from the perspective of health professionals and caregivers, rather than patients. This research focused on gaining a better understanding of patients’ perspectives on self-management and support. Methods Semi-structured interviews, preceded by preparatory assignments, were conducted with ten patients with T2DM treated in Dutch primary care. Results We found that patients experience ‘active’ self-management when recently diagnosed. As time progresses and no problems occur, patients do not experience their disease-related behaviour as self-management. Diabetes has ‘just’ become part of their daily life, now including new routines taking diabetes into account. Conclusions With this knowledge, support solutions can be designed and implemented that better fit the needs, preferences and abilities of patients with T2DM.

Background: Technology is increasingly transforming the way we interact with others and undertake activities in our daily lives. The healthcare setting has, however, not yet realised the potential of technology solutions to facilitate communication between patients and healthcare providers. While the procedural and policy requirements of healthcare systems will ultimately drive such solutions, understanding the preferences and attitudes of patients is essential to ensure that technology implemented in the healthcare setting facilitates communication in safe, acceptable, and appropriate ways. Therefore, the purpose of this study was to examine patient preferences for using technology to communicate with health service providers about symptoms experienced following discharge from the hospital.Methods: Primary data were collected from patients admitted to a large metropolitan hospital in Australia during three consecutive months in 2018. Participants were asked about their daily use of technology including use of computers, email, phone, text messaging, mobile applications, social media, online discussion forums, and videoconference. They were then asked about their use of technologies in managing their health, and preferences for use when communicating about symptoms with health service providers following discharge from hospital.Results: Five hundred and twenty-five patients with a wide range of differing clinical conditions and demographics participated. Patients indicated they used a range of technologies in their everyday lives and to manage their health. Almost 60% of patients would prefer to return to hospital if they were experiencing symptoms of concern. However, if patients experienced symptoms that were not of concern, over 60% would prefer to communicate with the hospital via telephone or using technology. Admitting condition, income, and age were significantly associated with preferences for communication about symptoms following hospital discharge.Conclusions: Patients have varied preferences for communicating with their health service providers post-hospital discharge. Findings suggest that some, but not all patients, would prefer to use technology to traditional methods of communicating with the healthcare team. Health services should offer patients multiple options for communicating about their recovery to ensure individual needs are appropriately met. [ABSTRACT FROM AUTHOR]

Background: Cardiovascular diseases (CVD) are commonly comorbid with mental health disorders, portending poorer cardiac prognosis. Despite the high prevalence of depression and anxiety, and guidelines recommending routine depression screening and referral, uptake of mental healthcare in CVD populations remains low. Reasons for the underutilisation of mental health and psychological services for this population remain largely unknown.Methods: Thirteen CVD patients with clinically significant psychological symptoms (depression, anxiety and/or stress) participated in one-on-one in-depth semi-structured interviews. Data were analysed using inductive thematic analysis.Results: Barriers to uptake included the timing of referral and screening, with patients reporting a need for longer term follow-up. A lack of information provision and understanding around mental health and services, especially following cardiac-events were further barriers. A reluctance to report mental health or engage in services was also identified, with patients indicating a preference for informal peer support networks. A range of practical barriers such as mobility, transport and cost were also reported.Conclusions: Longer term follow-up and routine mental health assessment may be beneficial to facilitate use of mental health services. Upskilling of practitioners around mental health may be a further avenue to promote information provision and enhance service use. Further focus on enhancing informal peer support may be a valuable initial approach for the CVD population. The implications for improving services and enhancing service use are discussed. [ABSTRACT FROM AUTHOR]

Background: Medicines are one of the most common healthcare interventions, yet evidence shows patients often do not receive the information they want about their medicines. This affects their adherence and healthcare engagement. There is limited research exploring what information patients want about their medicines, from whom and in what format. The aim of this study was to determine the medicines information needs of patients admitted to the general medical service of a large New Zealand (NZ) hospital, and identify the barriers and enablers to meeting these needs.Methods: A descriptive exploratory approach using semi-structured interviews was used to understand the needs and preferences of patients for information about their regular medicines and the barriers and facilitators to obtaining this information. Patients admitted to a general medical ward at a large NZ hospital, aged 18 years and over, prescribed one or more regular medicines, and self-managing their own medicines prior to hospitalisation were included. Semi-structured interviews were conducted with each participant (n = 30) and transcribed, then analysed using a general inductive thematic analysis approach.Results: Five overarching themes captured the medicines information needs of patients: (1) autonomy; (2) fostering relationships; (3) access; (4) communication; and (5) minimal information needs. Patients desired information to facilitate their decision-making and self-management of their health. Support people, written information, and having good relationships with health providers enabled this. Having access to information at the right time, communicated in a clear and consistent way with opportunities for follow-up, was important. A significant portion of participants were satisfied with receiving minimal information and had no expectations of needing more medicines information.Conclusions: Although patients' medicines information needs varied between individuals, the importance of receiving information in an accessible, timely manner, and having good relationships with health providers, were common to most. Considering these needs is important to optimise information delivery in general medical patients. [ABSTRACT FROM AUTHOR]

Background: Co-production and co-design approaches to quality improvement (QI) efforts are gaining momentum in healthcare. Yet, these approaches can be challenging, not least when it comes to patient involvement. The aim of this study was to examine what might influence QI efforts in which patients are involved, as experienced by the patients and the healthcare professionals involved.Methods: This study involved a qualitative design inspired by the constructivist grounded theory. In one mid-sized Swedish hospital's patient process organisation, data was collected from six QI teams that involved patients in their QI efforts, addressing care paths for patients with transient, chronic and/or multiple parallel diagnoses. Field notes were collected from participant observations during 53 QI team meetings in three of the six patient processes. Individual, semi-structured interviews were conducted with 12 patients and 12 healthcare professionals in all the six QI teams.Results: Patients were involved in QI efforts in different ways. In three of the QI teams, patient representatives attended team meetings regularly. One team consulted patient representatives on a single occasion, one team collected patient preferences structurally from individual interviews with patients, and one team combined interviews and a workshop with patients. The patients' and healthcare professionals' expressions of what might influence the QI efforts involving patients were similar in several ways. QI team members emphasized the importance of organisational structure and culture. Furthermore, they expressed a desire for ongoing interaction between patients and healthcare professionals in healthcare QI.Conclusions: QI team members recognised continuous dialogue and collective thinking by the sharing of experiences and preferences between patients and healthcare professionals as essential for achieving better matches between healthcare resources and patient needs in their QI efforts. Significant structural and cultural aspects of performing QI in complex hospital organisations were considered to be obstructions to progress. Therefore, to sustain learning and behaviour change through QI efforts at the team level, a deeper understanding of how structural and cultural aspects of QI promote or prevent success appears essential. [ABSTRACT FROM AUTHOR]

Background: Shared decision-making (SDM) is a process whereby clinicians and patients work together to select treatments based on both the patient's preferences and clinical evidence. Although patients with psychotic disorders want to participate more in decisions regarding their care, they have limited opportunities to do so because of various barriers. Knowing about health professionals' experiences with SDM is important toward achieving successful implementation. The study aim was to describe and explore health professionals' SDM experiences with patients with psychotic disorders.Methods: Three focus group interviews were conducted, with a total of 18 health professionals who work at one of three Norwegian community mental health centres where patients with psychotic disorders are treated. We applied a descriptive and exploratory approach using qualitative content analysis.Results: Health professionals primarily understand the SDM concept to mean giving patients information and presenting them with a choice between different antipsychotic medications. Among the barriers to SDM, they emphasized that patients with psychosis have a limited understanding of their health situation and that time is needed to build trust and alliances. Health professionals mainly understand patients with psychotic disorders as a group with limited abilities to make their own decisions. They also described the concept of SDM with little consideration of presenting different treatment options. Psychological or social interventions were often presented as complementary to antipsychotic medications, rather than as an alternative to them.Conclusion: Health professionals' understanding of SDM is inconsistent with the definition commonly used in the literature. They consider patients with psychotic disorders to have limited abilities to participate in decisions regarding their own treatment. These findings suggest that health professionals need more theoretical and practical training in SDM. [ABSTRACT FROM AUTHOR]

Abstract Background Case review and discussion at multidisciplinary team meetings (MDTMs) have evolved into standard practice in cancer care with the aim to provide evidence-based treatment recommendations. As a basis for work to optimize the MDTMs, we investigated participants’ views on the meeting function, including perceived benefits and barriers. Methods In a cross-sectional study design, 244 health professionals from south Sweden rated MDTM meeting structure and function, benefits from these meetings and barriers to reach a treatment recommendation. Results The top-ranked advantages from MDTMs were support for patient management and competence development. Low ratings applied to monitoring patients for clinical trial inclusion and structured work to improve the MDTM. Nurses and cancer care coordinators did less often than physicians report involvement in the case discussions. Major benefits from MDTM were reported to be more accurate treatment recommendations, multidisciplinary evaluation and adherence to clinical guidelines. Major barriers to a joint treatment recommendation were reported to be need for supplementary investigations and insufficient pathology reports. Conclusions Health professionals’ report multiple benefits from MDTMs, but also define areas for improvement, e.g. access to complete information and clarified roles for the different health professions. The emerging picture suggests that structures for regular MDTM evaluations and increased focus on patient-related perspectives should be developed and implemented.

Background: The substantial prevalence and consequences of intimate partner violence (IPV) underscore the need for effective healthcare response in the way of screening and follow up care. Despite growing evidence regarding perspectives on healthcare-based screening for IPV experiences (i.e., victimization), there is an extremely limited evidence-base to inform practice and policy for detecting IPV use (i.e., perpetration). This study identified barriers, facilitators, and implementation preferences among United States (US) Veterans Health Administration (VHA) patients and providers for IPV use screening.Methods: We conducted qualitative interviews with patients enrolled in VHA healthcare (N = 10) and focus groups with VHA providers across professional disciplines (N = 29). Data was analyzed using thematic and content analyses.Results: Qualitative analysis revealed convergence between patients' and providers' beliefs regarding key factors for IPV use screening, including the importance of a strong rapport, clear and comprehensive processes and procedures, universal implementation of screening, and a self-report screening tool that assesses for both IPV use and experiences concurrently.Conclusions: Findings provide foundational information regarding patient and provider barriers, facilitators, and preferences for IPV use screening that can inform clinical practice and next steps in this important but understudied aspect of healthcare. [ABSTRACT FROM AUTHOR]

Background: Although patient participation is strongly associated with high quality of healthcare, valid means to measure and report a comprehensive notion of patient participation are scarce. The Patient Preferences for Patient Participation (4Ps) is a new healthcare practice and research tool, comprising patients' preferences as well as experiences. The 4Ps employs 12 items for the patient to conceptualise patient participation. The aim of this paper is to describe how the two perspectives of patient participation, namely preferences and experiences, can be combined to visualise and report preference-based patient participation.Methods: With four response alternatives in each section, the 4Ps offers sixteen possible combinations of degree of match per item. Theoretical and clinical principles fostered a tentative order of six ranks and three levels of preference-based patient participation. To test the standard, statistical analyses for ordinal data were performed, using data from a randomised controlled trial evaluating an intervention aiming to improve patient participation. Further, structures for visualising the preference-based patient participation of individuals and groups were suggested.Results: Data from the 4Ps demonstrated the individuals' preference-based patient participation, indicating either a match or a mismatch for each item. Mismatches represented either the experience of participation surpassing the patient's preferences, or the patient's preferences for patient participation not being established. At group level, the suggested approach for visualising and reporting the 4Ps demonstrated that the intervention group had a significantly higher proportion of sufficient preference-based patient participation for certain items than the control group. These results had not been identified earlier, when using the preferences and experiences of patient participation as separate measures.Conclusions: Ways to easily acquaint stakeholders with patients' preferences for patient participation are needed, in order for healthcare staff to better use resources to match the basic requirements of individuals and groups. While the 4Ps can guide professionals to patient participation as framed in legislations, concept analyses and by patients, a visualisation of the results is needed to capture preference-based patient participation. The proposed route to representing degree of match in preferences and experiences may also be relevant to other dimensions of quality of healthcare. [ABSTRACT FROM AUTHOR]

Background: Guidelines based on patient preferences differ from those developed solely by clinicians and may promote patient adherence to guideline recommendations. There is scant evidence on how to develop patient-informed guidelines. This study aimed to describe how guideline developers identify, incorporate and report patient preferences.Methods: We employed a descriptive cross-sectional survey design. Eligible organizations were non-profit agencies who developed at least one guideline in the past five years and had considered patient preferences in guideline development. We identified developers through the Guidelines International Network and publicly-available guideline repositories, administered the survey online, and used summary statistics to report results.Results: The response rate was 18.3% (52/284). Respondents included professional societies, and government, academic, charitable and healthcare delivery organizations from 18 countries with at least 1 to ≥6 years of experience generating patient-informed guidelines. Organizations most frequently identified preferences through patient panelists (86.5%) and published research (84.6%). Most organizations (48, 92.3%) used multiple approaches to identify preferences (median 3, range 1 to 5). Most often, organizations used preferences to generate recommendations (82.7%) or establish guideline questions (73.1%). Few organizations explicitly reported preferences; instead, they implicitly embedded preferences in guideline recommendations (82.7%), questions (73.1%), or point-of-care communication tools (61.5%). Most developers had little capacity to generate patient-informed guidelines. Few offered training to patients (30.8%), or had dedicated funding (28.9%), managers (9.6%) or staff (9.6%). Respondents identified numerous barriers to identifying preferences. They also identified processes, resources and clinician- and patient-strategies that can facilitate the development of patient-informed guidelines. In contrast to identifying preferences, developers noted few approaches for, or barriers or facilitators of incorporating or reporting preferences.Conclusions: Developers emphasized the need for knowledge on how to identify, incorporate and report patient preferences in guidelines. In particular, how to use patient preferences to formulate recommendations, and transparently report patient preferences and the influence of preferences on guidelines is unknown. Still, insights from responding developers may help others who may be struggling to generate guidelines informed by patient preferences. [ABSTRACT FROM AUTHOR]

Abstract Background Personalized medicine has the potential to allow patients to receive drugs specific to their individual disease, and to increase the efficiency of the healthcare system. There is currently no comprehensive overview of personalized medicine, and this research aims to provide an overview of the concept and definition of personalized medicine in nine European countries. Methods A targeted literature review of selected health databases and grey literature was conducted to collate information regarding the definition, process, use, funding, impact and challenges associated with personalized medicine. In-depth qualitative interviews were carried out with experts with health technology assessment, clinical provisioning, payer, academic, economic and industry experience, and with patient organizations. Results We identified a wide range of definitions of personalized medicine, with most studies referring to the use of diagnostics and individual biological information such as genetics and biomarkers. Few studies mentioned patients’ needs, beliefs, behaviour, values, wishes, utilities, environment and circumstances, and there was little evidence in the literature for formal incorporation of patient preferences into the evaluation of new medicines. Most interviewees described approaches to stratification and segmentation of patients based on genetic markers or diagnostics, and few mentioned health-related quality of life. Conclusions The published literature on personalized medicine is predominantly focused on patient stratification according to individual biological information. Although these approaches are important, incorporation of environmental factors and patients’ preferences in decision making is also needed. In future, personalized medicine should move from treating diseases to managing patients, taking into account all individual factors.

Background: Personalized medicine has the potential to allow patients to receive drugs specific to their individual disease, and to increase the efficiency of the healthcare system. There is currently no comprehensive overview of personalized medicine, and this research aims to provide an overview of the concept and definition of personalized medicine in nine European countries.Methods: A targeted literature review of selected health databases and grey literature was conducted to collate information regarding the definition, process, use, funding, impact and challenges associated with personalized medicine. In-depth qualitative interviews were carried out with experts with health technology assessment, clinical provisioning, payer, academic, economic and industry experience, and with patient organizations.Results: We identified a wide range of definitions of personalized medicine, with most studies referring to the use of diagnostics and individual biological information such as genetics and biomarkers. Few studies mentioned patients' needs, beliefs, behaviour, values, wishes, utilities, environment and circumstances, and there was little evidence in the literature for formal incorporation of patient preferences into the evaluation of new medicines. Most interviewees described approaches to stratification and segmentation of patients based on genetic markers or diagnostics, and few mentioned health-related quality of life.Conclusions: The published literature on personalized medicine is predominantly focused on patient stratification according to individual biological information. Although these approaches are important, incorporation of environmental factors and patients' preferences in decision making is also needed. In future, personalized medicine should move from treating diseases to managing patients, taking into account all individual factors. [ABSTRACT FROM AUTHOR]

Background: Increasing numbers of people with HIV are living into older age and experiencing comorbidities. The development of new models of care to meet the needs of this population is now a priority. It is important that the views and preferences of patients inform the development of services in order to maintain high levels of patient satisfaction and engagement. The aim of this systematic review was to determine which aspects of healthcare are particularly valued by people living with HIV. Methods: We searched electronic databases and reference lists of relevant articles. The search strategy was developed to identify articles reporting on HIV positive patients' perceptions, evaluations or experiences of healthcare services and factors associated with satisfaction with care. Peer-reviewed papers and conference abstracts were included if the study reported on aspects of health care that were valued by people living with HIV, data were collected during the era of combination therapy (from 1996 onwards), and the paper was published in English. A thematic approach to data synthesis was used. Results: Twenty-three studies met the inclusion criteria. Studies used both qualitative and quantitative methods. Six studies specifically reported on relative importance to patients of different aspects of care. The valued aspects of care identified were grouped into seven themes. These highlighted the importance to patients of: a good health care professional-patient relationship, HIV specialist knowledge, continuity of care, ease of access to services, access to high quality information and support, effective co-ordination between HIV specialists and other healthcare professionals, and involvement in decisions about treatment and care. We were unable to determine the relative importance to patients of different aspects of care because of methodological differences between the studies. Conclusions: This review identified several attributes of healthcare that are valued by people living with HIV, many of which would be relevant to any future reconfiguration of services to meet the needs of an ageing population. Further research is required to determine the relative importance to patients of different aspects of care. [ABSTRACT FROM AUTHOR]

Objectives: The burden and costs of abdominal surgery for chronic conditions are on the rise, but could be reduced through self-management support. However, structured support to prepare for colorectal surgery is not routinely offered to patients in Canada. This study aimed to describe experiences and explore preferences for multimodal prehabilitation among colorectal surgery patients. Methods: A qualitative descriptive study using three focus groups (FG) was held with 19 patients who had a surgical date for abdominal surgery (April 2017-April 2018) and lived close (≤ 50 km radius) to a tertiary hospital in Western Canada (including a Surgical Lead for the British Columbia Enhanced Recovery After Surgery (ERAS) Collaborative). FGs were audio-taped and verbatim transcribed with coding and pile-and-sort methods performed by two independent reviewers, confirmed by a third reviewer, in NVivo v9 software; followed by thematic analysis and narrative synthesis. Results: Four themes emerged: support, informed decision-making, personalization of care, and mental/emotional health, which patients felt was particularly important but rarely addressed. Patient preferences for prehabilitation programming emphasised regular support from a single professional source, simple health messages, convenient access, and flexibility. Conclusions: There is an unmet need for structured preoperative support to better prepare patients for colorectal surgery. Future multimodal prehabilitation should be flexible and presented with non-medical information so patients can make informed decisions about their preoperative care and surgical outcomes. Healthcare providers have an important role in encouraging healthy lifestyle changes before colorectal surgery, though clearer communication and accurate advice on self-care, particularly mental health, are needed for improving patient outcomes. Highlights: • Optimising preoperative care for abdominal surgery patients could improve outcomes. • Patient experiences of preparing for colorectal surgery could inform future interventions, but patient-oriented research to improve quality of care is scarce. • There is an unmet need for preoperative support in colorectal surgery. • Future multimodal prehabilitation should incorporate patient preferences. [ABSTRACT FROM AUTHOR]

Background: Patient enrolment into clinical trials is based on oral information and informed consent, which includes an information sheet and a consent certificate. The written information should be complete, but at the same time risks being so complex that it may be questioned if a fully informed consent is possible to provide. We explored patient representatives' views and perceptions on the written trial information used in clinical cancer trials.Methods: Written patient information leaflets used in four clinical trials for colorectal cancer were used for the study. The trials included phase I-III trials, randomized and non-randomized trials that evaluated chemotherapy/targeted therapy in the neoadjuvant, adjuvant and palliative settings. Data were collected through focus groups and were analysed using inductive content analysis.Results: Two major themes emerged: emotional responses and cognitive responses. Subthemes related to the former included individual preferences and perceptions of effect, while subthemes related to the latter were comprehensibility and layout. Based on these observations the patient representatives provided suggestions for improvement, which largely included development of future simplified and more attractive informed consent forms.Conclusions: The emotional and cognitive responses to written patient information reported by patient representatives provides a basis for revised formats in future trials and add to the body of information that support use of plain language, structured text and illustrations to improve the informed consent process and thereby patient enrolment into clinical trials. [ABSTRACT FROM AUTHOR]

Background: Despite widespread documentation of racial/ethnic disparities in care (predominantly under-use of needed care), differences in population-wide attitudes or experiences about under- or overuse (care where harms may outweigh potential benefits) of care are not well understood. We examined whether race/ethnicity is associated with perceptions or experiences of overuse or underuse.Methods: We conducted secondary analysis of a cross-sectional national telephone survey of nationally representative sample of 1238 American adults; 57.9 % female, 75.4 % Non-Hispanic White, 11.8 % Non-Hispanic Black, 10.1 % Hispanic. The main outcome measures are general perceptions and personal experiences of overuse and underuse, including cost-related dimensions of each.Results: Bivariate results indicated that respondents of minority race/ethnicity generally viewed both overuse and underuse as bigger problems than did Whites, and reported more personal experiences of each. After adjustment, Hispanics were less likely than Whites to report personal experiences of overuse (odds ratio [OR] [95 % CI], 0.44 [0.23 to 0.86]), while Blacks and Others were more likely to report cost-related overuse (ORs [95 % CIs], 4.16 [2.30 to 7.51]; 3.55 [1.52 to 8.28], respectively). Non-Hispanic Others more often reported doctors' protection from overuse (OR [95 % CI], 3.69 [1.75 to 7.78]). General concerns with underuse were more frequent among Blacks and Hispanics (ORs [95 % CIs], 3.07 [1.72 to 5.54]; 2.12 [1.24 to 3.61] respectively), while Others reported significantly fewer concerns (OR [95 % CI], 0.43 [0.23 to 0.80]).Conclusions: Over- and underuse of medical care are important problems for many Americans, and experiences vary by race/ethnicity. Clinician communication and educational campaigns about appropriateness of care may need tailoring for varying population groups. [ABSTRACT FROM AUTHOR]