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BACKGROUND: Patient-reported outcome measures (PROMs) are questionnaires that measure patient outcomes related to quality of life, health, and functioning, and are increasingly used to assess important outcomes from the patient's perspective. For PROMs to contribute to better health and better care, it is vital that their content validity be adequate. This requires patient involvement in various steps of PROM development. PROM developers not only recognize the benefits of patient involvement but also report difficulties in recruiting patients and experience patient involvement as time-consuming, logistically challenging, and expensive. OBJECTIVE: This study seeks to explore different strategies for disclosing the experiential knowledge of patients, namely through analyzing patient stories on the web and social media. The research questions are as follows: (1) how do bloggers living with a disease experience their health-related quality of life? (2) How are these experiences reflected in the domains and items of PROMs related to their disease? METHODS: First, a qualitative analysis of blogs written by patients was performed. Second, subthemes and underlying codes resulting from this qualitative analysis were systematically compared with the domains and items in PROMs for the respective diseases that the bloggers write about. Blogs were identified via the Google search engine between December 2019 and May 2021. RESULTS: Bloggers describe a wide range of experiences regarding their physical functioning and health; mental well-being; social network and support; daily life, education, work, and leisure; coping; and self-management. Bloggers also write about their positive and negative experiences with health care delivery, the organization of health care, and health care professionals. In general, patients' experiences as described in blogs were reflected in the domains and items of the PROMs related to their disease. However, except for diabetes mellitus, in all the sets of PROMs, potentially missing topics could be identified. Similarly, with the exception of Parkinson disease, all PROMs address issues that patients did not write about in their blogs and that might therefore be redundant. CONCLUSIONS: Web-based patient stories in the form of blogs reveal how people living with a certain disease experience their health-related quality of life. These stories enable analyses of patients' experiences that can be used to assess the content validity of PROMs. This can be a useful step for researchers who are looking for sets of measuring instruments that match their purposes.

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Given the rapidly rising cancer burden in the USA, the need to innovate survivorship care for oncology patients is rising rapidly. The current body of empirical evidence in survivorship care has focused on care provided by general practitioners (GP) and specialists/surgeons (SS). In particular, current evaluations address cost of care, cancer recurrence, quality of life, and overall survival of patients, with results indicating no statistically significant differences in GP- and SS-led care models and little emphasis on the broader characteristics of care settings. We fill this gap in survivorship care by introducing a perspective on the potential for holistic care delivery with a multidisciplinary team approach at integrated practice units (IPUs). Additionally, we propose a comprehensive examination of survivorship care across GP-, SS-, and IPU-led settings to provide researchers and practitioners with solid ground to determine the optimal survivorship care model, considering four key characteristics: (1) operating mode and skills, (2) cost and accountability of care, (3) health outcome measurement, and (4) workflow and scheduling.

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BACKGROUND: Disparities in US physician burnout rates across age, gender, and specialty groups as measured by the Maslach Burnout Inventory-Human Services Survey for Medical Personnel (MBI) are well documented. We evaluated whether disparities in US physician burnout are explained by differences in the MBI's functioning across physician age, gender, and specialty groups. METHODS: We assessed the measurement equivalence of the MBI across age, gender, and specialty groups in multi-group item response theory- (IRT-) based differential item functioning (DIF) analyses using secondary, cross-sectional survey data from US physicians (n = 6577). We detected DIF using two IRT-based methods and assessed its impact by estimating the overall average difference in groups' subscale scores attributable to DIF. We assessed DIF's practical significance by comparing differences in individuals' subscale scores and burnout prevalence estimates from models unadjusted and adjusted for DIF. RESULTS: We detected statistically significant age-, gender-, and specialty- DIF in all but one MBI item. However, in all cases, average differences in expected subscale-level scores due to DIF were < 0.10 SD on each subscale. Differences in physicians' individual-level subscale scores and burnout symptom prevalence estimates across DIF- adjusted and unadjusted IRT models were also small (in all cases, mean absolute differences in individual subscale scores were < 0.04 z-score units; prevalence estimates differed by < 0.70%). CONCLUSIONS: Age-, gender-, and specialty-related disparities in US physician burnout are not explained by differences in the MBI's functioning across these demographic groups. Our findings support the use of the MBI as a valid tool to assess age-, gender-, and specialty-related disparities in US physician burnout.

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PURPOSE: Current US health policy discussions regarding physician burnout have largely been informed by studies employing the Maslach Burnout Inventory (MBI); yet, there is little in the literature focused on interpreting MBI scores. We described the burnout symptoms and precision associated with MBI scores in US physicians. METHODS: Using item response theory (IRT) analyses of secondary, cross-sectional survey data, we created response profiles describing the probability of burnout symptoms associated with US physicians' MBI emotional exhaustion (EE), depersonalization (DP), and personal accomplishment (PA) subscale scores. Response profiles were mapped to raw subscale scores and used to predict symptom endorsements at mean scores and commonly used cut-points. RESULTS: The average US physician was likely to endorse feeling he/she is emotionally drained, used up, frustrated, and working too hard and all PA indicators once weekly or more but was unlikely to endorse feeling any DP symptoms once weekly or more. At the commonly used EE and DP cut-points of 27 and 10, respectively, a physician was unlikely to endorse feeling burned out or any DP symptoms once weekly or more. Each subscale assessed the majority of sample score ranges with ≥ 0.70 reliability. CONCLUSIONS: We produced a crosswalk mapping raw MBI subscale scores to scaled scores and response profiles calibrated in a US physician sample. Our results can be used to better understand the meaning and precision of MBI scores in US physicians; compare individual/group MBI scores against a reference population of US physicians; and inform the selection of subscale cut-points for defining categorical physician burnout outcomes.

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BACKGROUND: Collecting patient-reported outcome (PRO) data systematically enables objective evaluation of treatment and its related outcomes. Using disease-specific questionnaires developed by the International Consortium for Health Outcome Measurement (ICHOM) allows for comparison between physicians, hospitals, and even different countries. OBJECTIVE: This pilot project aimed to establish a digital system to measure PROs for new patients with breast cancer who attended the Charité Breast Center This approach should serve as a blueprint to further expand the PRO measurement to other disease entities and departments. METHODS: In November 2016, we implemented a Web-based system to collect PRO data at Charité Breast Center using the ICHOM dataset. All new patients at the Breast Center were enrolled and answered a predefined set of questions using a tablet computer. Once they started their treatment at Charité, automated emails were sent to the patients at predefined treatment points. Those emails contained a Web-based link through which they could access and answer questionnaires. RESULTS: By now, 541 patients have been enrolled and 2470 questionnaires initiated. Overall, 9.4% (51/541) of the patients were under the age of 40 years, 49.7% (269/541) between 40 and 60 years, 39.6% (214/541) between 60 and 80 years, and 1.3% (7/541) over the age of 80 years. The average return rate of questionnaires was 67.0%. When asked about the preference regarding paper versus Web-based questionnaires, 6.0% (8/134) of the patients between 50 and 60 years, 6.0% (9/150) between 60 and 70 years, and 12.7% (9/71) over the age of 70 years preferred paper versions. CONCLUSIONS: Measuring PRO in patients with breast cancer in an automated electronic version is possible across all age ranges while simultaneously achieving a high return rate.

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BACKGROUND: Implementing the value-based healthcare concept (VBHC) is a growing management trend in Swedish healthcare organizations. The aim of this study is to explore how representatives of four pilot project teams experienced implementing VBHC in a large Swedish University Hospital over a period of 2 years. The project teams started their work in October 2013. METHODS: An explorative and qualitative design was used, with interviews as the data collection method. All the participants in the four pilot project teams were individually interviewed three times, with interviews starting in March 2014 and ending in November 2015. All the interviews were transcribed and analyzed using qualitative analysis. RESULTS: Value for the patients was experienced as the fundamental drive for implementing VBHC. However, multiple understandings of what value for patients' means existed in parallel. The teams received guidance from consultants during the first 3 months. There were pros and cons to the consultant's guidance. This period included intensive work identifying outcome measurements based on patients' and professionals' perspectives, with less interest devoted to measuring costs. The implementation process, which both gave and took energy, developed over time and included interventions. In due course it provided insights to the teams about the complexity of healthcare. The necessity of coordination, cooperation and working together inter-departmentally was critical. CONCLUSIONS: Healthcare organizations implementing VBHC will benefit from emphasizing value for patients, in line with the intrinsic drive in healthcare, as well as managing the process of implementation on the basis of understanding the complexities of healthcare. Paying attention to the patients' voice is a most important concern and is also a key towards increased engagement from physicians and care providers for improvement work.

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OBJECTIVE: To estimate the causal effect of a Michigan peer counselor (PC) breastfeeding support program for low-income women on infant health outcomes. DATA SOURCES: Program referral forms, program forms (enrollment, birth, and exit data), and state administrative data from the Women Infants and Children program, Medicaid, and Vital Records. STUDY DESIGN: Quasi-random enrollment due to the excess demand for PC breastfeeding support services allowed us to compare the infants of women who requested services and were enrolled in the program (the treatment group, N = 274) to the infants of women who requested services and were not enrolled (the control group, N = 572). Data were analyzed using regression. PRINCIPAL FINDINGS: The PC program increased the fraction breastfeeding at birth by 19.3 percent and breastfeeding duration by 2.84 weeks. Program participation also reduced the fraction of infants with gastrointestinal disorders by a statistically significant 7.9 percent. The program, if anything, increased the overall health care utilization. CONCLUSIONS: This Michigan PC breastfeeding support program resulted in improvements in breastfeeding and infant health outcomes as measured by the diagnosis of ailments while increasing health care utilization.

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The purpose of this study was to investigate the factor structure of the Multiple Sclerosis Impact Scale (MSIS-29) to assess its suitability for modeling the impact of MS on a nation-wide sample of individuals from the United States. Investigators completed a Confirmatory Factor Analysis (CFA) to examine the two-factor structure proposed by Hobart et al. [17]. Although the original MSIS-29 factor structure did not fit the data exactly, the hypothesized two-factor model was partially supported in the current data. Implications for future instrument development and rehabilitation practice are discussed.

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For over a decade, organizations have attempted to include the measurement and reporting of health outcome data in contractual agreements between funders and health service providers, but few have succeeded. This research explores the utility of collecting health outcomes data that could be included in funding contracts for an Australian Community Care Organisation (CCO). An action-research methodology was used to trial the implementation of outcome measurement in six diverse projects within the CCO using a taxonomy of interventions based on the International Classification of Function. The findings from the six projects are presented as vignettes to illustrate the issues around the routine collection of health outcomes in each case. Data collection and analyses were structured around Donabedian's structure-process-outcome triad. Health outcomes are commonly defined as a change in health status that is attributable to an intervention. This definition assumes that a change in health status can be defined and measured objectively; the intervention can be defined; the change in health status is attributable to the intervention; and that the health outcomes data are accessible. This study found flaws with all of these assumptions that seriously undermine the ability of community-based organizations to introduce routine health outcome measurement. Challenges were identified across all stages of the Donabedian triad, including poor adherence to minimum dataset requirements; difficulties standardizing processes or defining interventions; low rates of use of outcome tools; lack of value of the tools to the service provider; difficulties defining or identifying the end point of an intervention; technical and ethical barriers to accessing data; a lack of standardized processes; and time lags for the collection of data. In no case was the use of outcome measures sustained by any of the teams, although some quality-assurance measures were introduced as a result of the project.