Sociodemographic characteristics and longitudinal progression of multimorbidity: A multistate modelling analysis of a large primary care records dataset in England.

BACKGROUND: Multimorbidity, characterised by the coexistence of multiple chronic conditions in an individual, is a rising public health concern. While much of the existing research has focused on cross-sectional patterns of multimorbidity, there remains a need to better understand the longitudinal accumulation of diseases. This includes examining the associations between important sociodemographic characteristics and the rate of progression of chronic conditions. METHODS AND FINDINGS: We utilised electronic primary care records from 13.48 million participants in England, drawn from the Clinical Practice Research Datalink (CPRD Aurum), spanning from 2005 to 2020 with a median follow-up of 4.71 years (IQR: 1.78, 11.28). The study focused on 5 important chronic conditions: cardiovascular disease (CVD), type 2 diabetes (T2D), chronic kidney disease (CKD), heart failure (HF), and mental health (MH) conditions. Key sociodemographic characteristics considered include ethnicity, social and material deprivation, gender, and age. We employed a flexible spline-based parametric multistate model to investigate the associations between these sociodemographic characteristics and the rate of different disease transitions throughout multimorbidity development. Our findings reveal distinct association patterns across different disease transition types. Deprivation, gender, and age generally demonstrated stronger associations with disease diagnosis compared to ethnic group differences. Notably, the impact of these factors tended to attenuate with an increase in the number of preexisting conditions, especially for deprivation, gender, and age. For example, the hazard ratio (HR) (95% CI; p-value) for the association of deprivation with T2D diagnosis (comparing the most deprived quintile to the least deprived) is 1.76 ([1.74, 1.78]; p < 0.001) for those with no preexisting conditions and decreases to 0.95 ([0.75, 1.21]; p = 0.69) with 4 preexisting conditions. Furthermore, the impact of deprivation, gender, and age was typically more pronounced when transitioning from an MH condition. For instance, the HR (95% CI; p-value) for the association of deprivation with T2D diagnosis when transitioning from MH is 2.03 ([1.95, 2.12], p < 0.001), compared to transitions from CVD 1.50 ([1.43, 1.58], p < 0.001), CKD 1.37 ([1.30, 1.44], p < 0.001), and HF 1.55 ([1.34, 1.79], p < 0.001). A primary limitation of our study is that potential diagnostic inaccuracies in primary care records, such as underdiagnosis, overdiagnosis, or ascertainment bias of chronic conditions, could influence our results. CONCLUSIONS: Our results indicate that early phases of multimorbidity development could warrant increased attention. The potential importance of earlier detection and intervention of chronic conditions is underscored, particularly for MH conditions and higher-risk populations. These insights may have important implications for the management of multimorbidity.

Role of Curvature-Sensing Proteins in the Uptake of Nanoparticles with Different Mechanical Properties.

Nanoparticles of different properties, such as size, charge, and rigidity, are used for drug delivery. Upon interaction with the cell membrane, because of their curvature, nanoparticles can bend the lipid bilayer. Recent results show that cellular proteins capable of sensing membrane curvature are involved in nanoparticle uptake; however, no information is yet available on whether nanoparticle mechanical properties also affect their activity. Here liposomes and liposome-coated silica are used as a model system to compare uptake and cell behavior of two nanoparticles of similar size and charge, but different mechanical properties. High-sensitivity flow cytometry, cryo-TEM, and fluorescence correlation spectroscopy confirm lipid deposition on the silica. Atomic force microscopy is used to quantify the deformation of individual nanoparticles at increasing imaging forces, confirming that the two nanoparticles display distinct mechanical properties. Uptake studies in HeLa and A549 cells indicate that liposome uptake is higher than for the liposome-coated silica. RNA interference studies to silence their expression show that different curvature-sensing proteins are involved in the uptake of both nanoparticles in both cell types. These results confirm that curvature-sensing proteins have a role in nanoparticle uptake, which is not restricted to harder nanoparticles, but includes softer nanomaterials commonly used for nanomedicine applications.

The CONFIDENT study protocol: a randomized controlled trial comparing two methods to increase long-term care worker confidence in the COVID-19 vaccines.

BACKGROUND: Clinical and real-world effectiveness data for the COVID-19 vaccines have shown that they are the best defense in preventing severe illness and death throughout the pandemic. However, in the US, some groups remain more hesitant than others about receiving COVID-19 vaccines. One important group is long-term care workers (LTCWs), especially because they risk infecting the vulnerable and clinically complex populations they serve. There is a lack of research about how best to increase vaccine confidence, especially in frontline LTCWs and healthcare staff. Our aims are to: (1) compare the impact of two interventions delivered online to enhanced usual practice on LTCW COVID-19 vaccine confidence and other pre-specified secondary outcomes, (2) determine if LTCWs' characteristics and other factors mediate and moderate the interventions' effect on study outcomes, and (3) explore the implementation characteristics, contexts, and processes needed to sustain a wider use of the interventions. METHODS: We will conduct a three-arm randomized controlled effectiveness-implementation hybrid (type 2) trial, with randomization at the participant level. Arm 1 is a dialogue-based webinar intervention facilitated by a LTCW and a medical expert and guided by an evidence-based COVID-19 vaccine decision tool. Arm 2 is a curated social media web application intervention featuring interactive, dynamic content about COVID-19 and relevant vaccines. Arm 3 is enhanced usual practice, which directs participants to online public health information about COVID-19 vaccines. Participants will be recruited via online posts and advertisements, email invitations, and in-person visits to care settings. Trial data will be collected at four time points using online surveys. The primary outcome is COVID-19 vaccine confidence. Secondary outcomes include vaccine uptake, vaccine and booster intent for those unvaccinated, likelihood of recommending vaccination (both initial series and booster), feeling informed about the vaccines, identification of vaccine information and misinformation, and trust in COVID-19 vaccine information provided by different people and organizations. Exploration of intervention implementation will involve interviews with study participants and other stakeholders, an in-depth process evaluation, and testing during a subsequent sustainability phase. DISCUSSION: Study findings will contribute new knowledge about how to increase COVID-19 vaccine confidence and effective informational modalities for LTCWs. TRIAL REGISTRATION: NCT05168800 at ClinicalTrials.gov, registered December 23, 2021.

Ethnic inequalities in age-related patterns of multiple long-term conditions in England: Analysis of primary care and nationally representative survey data.

Little is known about the patterning of multiple long-term conditions (MLTCs) by age, ethnicity and across conceptualisations of MLTCs (e.g. MLTCs with/without mental health conditions [MHCs]). We examined ethnic inequalities in age-related patterns of MLTCs, and combinations of physical and MHCs using the English GP Patient Survey and Clinical Practice Research Datalink. We described the association between MLTCs and age using multilevel regression models adjusting for sex and area-level deprivation with patients nested within GP practices. Similar analyses were repeated for MLTCs that include MHCs. We observed ethnic inequalities from middle-age onwards such as older Pakistani, Indian, Black Caribbean and Other ethnic people had increased risk of MLTCs compared to white British people, even after adjusting for area-level deprivation. Compared to white British people, Gypsy and Irish Travellers had higher levels of MLTCs across the age groups, and Chinese people had lower levels. Pakistani and Bangladeshi people aged 50-74 years were more likely than white people to report MLTCs that included MHCs. We find clear evidence of ethnic inequalities in MLTCs. The lower prevalence of MLTCs that include MHCs among some minoritised ethnic groups may be an underestimation due to underdiagnosis and/or inadequate primary care and requires further scrutiny.

Implementing mental health support teams in schools and colleges: the perspectives of programme implementers and service providers.

Background: Between 2018 and 2025, a national implementation programme is funding more than 500 new mental health support teams (MHSTs) in England, to work in education settings to deliver evidence-based interventions to children with mild to moderate mental health problems and support emotional wellbeing for all pupils. A new role, education mental health practitioner (EMHP), has been created for the programme.Aims: A national evaluation explored the development, implementation and early progress of 58 MHSTs in the programme's first 25 'Trailblazer' sites. This paper reports the views and experiences of people involved in MHST design, implementation and service delivery at a local, regional and national level.Methods: Data are reported from in-depth interviews with staff in five Trailblazer sites (n = 71), and the programme's regional (n = 52) and national leads (n = 21).Results: Interviewees universally welcomed the creation of MHSTs, but there was a lack of clarity about their purpose, concerns that the standardised CBT interventions being offered were not working well for some children, and challenges retaining EMHPs.Conclusions: This study raises questions about MHSTs' service scope, what role they should play in addressing remaining gaps in mental health provision, and how EMHPs can develop the skills to work effectively with diverse groups.

Block Length-Dependent Protein Fouling on Poly(2-oxazoline)-Based Polymersomes: Influence on Macrophage Association and Circulation Behavior.

Polymersomes are vesicular structures self-assembled from amphiphilic block copolymers and are considered an alternative to liposomes for applications in drug delivery, immunotherapy, biosensing, and as nanoreactors and artificial organelles. However, the limited availability of systematic stability, protein fouling (protein corona formation), and blood circulation studies hampers their clinical translation. Poly(2-oxazoline)s (POx) are valuable antifouling hydrophilic polymers that can replace the current gold-standard, poly(ethylene glycol) (PEG), yet investigations of POx functionality on nanoparticles are relatively sparse. Herein, a systematic study is reported of the structural, dynamic and antifouling properties of polymersomes made of poly(2-methyl-2-oxazoline)-block-poly(dimethylsiloxane)-block-poly(2-methyl-2-oxazoline) (PMOXA-b-PDMS-b-PMOXA). The study relates in vitro antifouling performance of the polymersomes to atomistic molecular dynamics simulations of polymersome membrane hydration behavior. These observations support the experimentally demonstrated benefit of maximizing the length of PMOXA (degree of polymerization (DP) > 6) while keeping PDMS at a minimal length that still provides sufficient membrane stability (DP > 19). In vitro macrophage association and in vivo blood circulation evaluation of polymersomes in zebrafish embryos corroborate these findings. They further suggest that single copolymer presentation on polymersomes is outperformed by blends of varied copolymer lengths. This study helps to rationalize design rules for stable and low-fouling polymersomes for future medical applications.

The current state of genetic risk models for the development of kidney cancer: a review and validation.

OBJECTIVE: To review the current state of genetic risk models for predicting the development of kidney cancer, by identifying and comparing the performance of published models. METHODS: Risk models were identified from a recent systematic review and the Cancer-PRS web directory. A narrative synthesis of the models, previous validation studies and related genome-wide association studies (GWAS) was carried out. The discrimination and calibration of the identified models was then assessed and compared in the UK Biobank (UKB) cohort (cases, 452; controls, 487 925). RESULTS: A total of 39 genetic models predicting the development of kidney cancer were identified and 31 were validated in the UKB. Several of the genetic-only models (seven of 25) and most of the mixed genetic-phenotypic models (five of six) had some discriminatory ability (area under the receiver operating characteristic curve >0.5) in this cohort. In general, models containing a larger number of genetic variants identified in GWAS performed better than models containing a small number of variants associated with known causal pathways. However, the performance of the included models was consistently poorer than genetic risk models for other cancers. CONCLUSIONS: Although there is potential for genetic models to identify those at highest risk of developing kidney cancer, their performance is poorer than the best genetic risk models for other cancers. This may be due to the comparatively small number of genetic variants associated with kidney cancer identified in GWAS to date. The development of improved genetic risk models for kidney cancer is dependent on the identification of more variants associated with this disease. Whether these will have utility within future kidney cancer screening pathways is yet to determined.

A Rectal Cancer Surgical Decision Aid Is Not Enough: A Qualitative Study.

BACKGROUND: Rectal cancer patients often face complex surgical treatment decisions, but there are few available tools to aid in decision-making. OBJECTIVE: We aimed to identify content and delivery preferences of rectal cancer patients and colorectal surgeons to guide future surgical decision aid creation. DESIGN: Qualitative study: inductive thematic analysis of semi-structured interviews. SETTING: In-person and phone interviews. PATIENTS: We purposively sampled 15 rectal cancer survivors based on demographics and surgery type. Five caregivers also participated. We purposively selected 10 surgeons based on practice type and years of experience. INTERVENTIONS: Semi-structured interviews. MAIN OUTCOME MEASURES: Major and minor themes for survivors and surgeons with thematic saturation. RESULTS: Interviews were a median of 61 minutes (41-93) for patients and 35 minutes (25-59) for surgeons. Nine survivors were younger than 65 years; 7 were female. Surgeons had been practicing for a mean of 10 years (SD 7.4), with 7 in academic and 3 in private settings. Participating survivors and surgeons wanted a comprehensive educational tool-not just a surgical decision aid. Survivors wanted more information on rectal cancer basics and lifestyle, care timelines, and resources during treatment. Surgeons thought patients mostly desired information about surgical options and bowel function. Both patients and surgeons wanted a tool that was personalized, simple, understandable, visually appealing, interactive, short, and in multiple formats. LIMITATIONS: Results may not be generalizable due to selection bias of participants. CONCLUSION: Rectal cancer survivors, their caregivers, and colorectal surgeons wanted an educational support tool that would address substantial educational needs through the continuum of disease rather than a surgical decision aid focusing on a discrete surgical choice only. See Video Abstract at http://links.lww.com/DCR/C20 . UNA AYUDA PARA LA DECISIN QUIRRGICA DEL CNCER DE RECTO NO ES SUFICIENTE UN ESTUDIO CUALITATIVO: ANTECEDENTES:Los pacientes con cáncer de recto a menudo enfrentan decisiones de tratamiento quirúrgico complejas, pero hay pocas herramientas disponibles para ayudar en la toma de decisiones.OBJETIVO:Nuestro objetivo fue identificar el contenido y las preferencias de entrega de los pacientes con cáncer de recto y los cirujanos colorrectales para guiar la futura creación de ayuda para la toma de decisiones quirúrgicas.DISEÑO:Estudio cualitativo: análisis temático inductivo de entrevistas semiestructuradas.ESCENARIO:Entrevistas en persona y por teléfono.PACIENTES:Tomamos muestras intencionalmente de 15 sobrevivientes de cáncer de recto, según la demografía y el tipo de cirugía. También participaron cinco cuidadores. Seleccionamos intencionalmente a 10 cirujanos según el tipo de práctica y los años de experiencia.INTERVENCIONES:Entrevistas semiestructuradas.PRINCIPALES MEDIDAS DE RESULTADO:Temas principales y secundarios para sobrevivientes y cirujanos con saturación temática.RESULTADOS:Las entrevistas tuvieron una mediana de 61 minutos (41-93) para pacientes y 35 minutos (25-59) para cirujanos. Nueve sobrevivientes tenían menos de 65 años; siete eran mujeres. Los cirujanos habían estado ejerciendo una media de 10 años (DE 7,4), con siete en entornos académicos y 3 en entornos privados. Los sobrevivientes y cirujanos participantes querían una herramienta educativa comprensible, no solo una ayuda para la decisión quirúrgica. Los sobrevivientes querían más información sobre los conceptos básicos y el estilo de vida del cáncer de recto, los plazos de atención y los recursos durante el tratamiento. Los cirujanos pensaron que los pacientes en su mayoría deseaban información sobre las opciones quirúrgicas y la función intestinal. Tanto los pacientes como los cirujanos querían una herramienta que fuera personalizada, simple, comprensible, visualmente atractiva, interactiva, corta y en múltiples formatos.LIMITACIONES:Los resultados pueden no ser generalizables debido al sesgo de selección de los participantes.CONCLUSIÓN:Los sobrevivientes de cáncer rectal, sus cuidadores y los cirujanos colorrectales querían una herramienta de apoyo educativo que cubriera las necesidades educativas sustanciales a lo largo del tratamiento de la enfermedad en lugar de una ayuda para la decisión quirúrgica que se centre solo en una opción quirúrgica discreta. Consulte Video Resumen en http://links.lww.com/DCR/C20 . (Traducción-Dr. Yolanda Colorado ).

Co-Development of a Web Application (COVID-19 Social Site) for Long-Term Care Workers ("Something for Us"): User-Centered Design and Participatory Research Study.

BACKGROUND: Improving confidence in and uptake of COVID-19 vaccines and boosters among long-term care workers (LTCWs) is a crucial public health goal, given their role in the care of elderly people and people at risk. While difficult to reach with workplace communication interventions, most LTCWs regularly use social media and smartphones. Various social media interventions have improved attitudes and uptake for other vaccines and hold promise for the LTCW population. OBJECTIVE: We aimed to develop a curated social web application (interactive website) to increase COVID-19 vaccine confidence (a 3-arm randomized trial is underway). METHODS: Following user-centric design and participatory research approaches, we undertook the following 3 steps: (1) content identification, (2) platform development, and (3) community building. A LTCW and stakeholder advisory group provided iterative input. For content identification (step 1), we identified topics of concern about COVID-19 vaccines via desktop research (published literature, public opinion polls, and social media monitoring), refined by interviewing and polling LTCWs. We also conducted a national online panel survey. We curated and fact-checked posts from popular social media platforms that addressed the identified concerns. During platform development (step 2), we solicited preferences for design and functionality via interviews and user experience testing with LTCWs. We also identified best practices for online community building (step 3). RESULTS: In the interviews (n=9), we identified 3 themes: (1) LTCWs are proud of their work but feel undervalued; (2) LTCWs have varying levels of trust in COVID-19-related information; and (3) LTCWs would welcome a curated COVID-19 resource that is easy to understand and use-"something for us". Through desktop research, LTCW interviews, and our national online panel survey (n=592) we found that participants are interested in information about COVID-19 in general, vaccine benefits, vaccine risks, and vaccine development. Content identification resulted in 434 posts addressing these topic areas, with 209 uploaded to the final web application. Our LTCW poll (n=8) revealed preferences for personal stories and video content. The platform we developed is an accessible WordPress-based social media web application, refined through formal (n=3) and informal user experience testing. Users can sort posts by topic or subtopic and react to or comment on posts. To build an online community, we recruited 3 LTCW "community ambassadors" and instructed them to encourage discussion, acknowledge concerns, and offer factual information on COVID-19 vaccines. We also set "community standards" for the web application. CONCLUSIONS: An iterative, user-centric, participatory approach led to the launch of an accessible social media web application with curated content for COVID-19 vaccines targeting LTCWs in the United States. Through our trial, we will determine if this approach successfully improves vaccine confidence. If so, a similar social media resource could be used to develop curated social media interventions in other populations and with other public health goals.

What matters most: Randomized controlled trial of breast cancer surgery conversation aids across socioeconomic strata.

BACKGROUND: Women of lower socioeconomic status (SES) with early-stage breast cancer are more likely to report poorer physician-patient communication, lower satisfaction with surgery, lower involvement in decision making, and higher decision regret compared to women of higher SES. The objective of this study was to understand how to support women across socioeconomic strata in making breast cancer surgery choices. METHODS: We conducted a 3-arm (Option Grid, Picture Option Grid, and usual care), multisite, randomized controlled superiority trial with surgeon-level randomization. The Option Grid (text only) and Picture Option Grid (pictures plus text) conversation aids were evidence-based summaries of available breast cancer surgery options on paper. Decision quality (primary outcome), treatment choice, treatment intention, shared decision making (SDM), anxiety, quality of life, decision regret, and coordination of care were measured from T0 (pre-consultation) to T5 (1-year after surgery. RESULTS: Sixteen surgeons saw 571 of 622 consented patients. Patients in the Picture Option Grid arm (n = 248) had higher knowledge (immediately after the visit [T2] and 1 week after surgery or within 2 weeks of the first postoperative visit [T3]), an improved decision process (T2 and T3), lower decision regret (T3), and more SDM (observed and self-reported) compared to usual care (n = 257). Patients in the Option Grid arm (n = 66) had higher decision process scores (T2 and T3), better coordination of care (12 weeks after surgery or within 2 weeks of the second postoperative visit [T4]), and more observed SDM (during the surgical visit [T1]) compared to usual care arm. Subgroup analyses suggested that the Picture Option Grid had more impact among women of lower SES and health literacy. Neither intervention affected concordance, treatment choice, or anxiety. CONCLUSIONS: Paper-based conversation aids improved key outcomes over usual care. The Picture Option Grid had more impact among disadvantaged patients. LAY SUMMARY: The objective of this study was to understand how to help women with lower incomes or less formal education to make breast cancer surgery choices. Compared with usual care, a conversation aid with pictures and text led to higher knowledge. It improved the decision process and shared decision making (SDM) and lowered decision regret. A text-only conversation aid led to an improved decision process, more coordinated care, and higher SDM compared to usual care. The conversation aid with pictures was more helpful for women with lower income or less formal education. Conversation aids with pictures and text helped women make better breast cancer surgery choices.

Women Who Are Young, Non-White, and with Lower Socioeconomic Status Report Higher Financial Toxicity up to 1 Year After Breast Cancer Surgery: A Mixed-Effects Regression Analysis.

PURPOSE: We examined self-reported financial toxicity and out-of-pocket expenses among adult women with breast cancer. METHODS: Patients spoke English, Spanish, or Mandarin Chinese, were aged 18+ years, had stage I-IIIA breast cancer, and were eligible for breast-conserving and mastectomy surgery. Participants completed surveys about out-of-pocket costs and financial toxicity at 1 week, 12 weeks, and 1 year postsurgery. RESULTS: Three hundred ninety-five of 448 eligible patients (88.2%) from the parent trial completed surveys. Excluding those reporting zero costs, crude mean ± SD out-of-pocket costs were $1,512 ± $2,074 at 1 week, $2,609 ± $6,369 at 12 weeks, and $3,308 ± $5,000 at 1 year postsurgery. Controlling for surgery, cancer stage, and demographics with surgeon and clinic as random effects, higher out-of-pocket costs were associated with higher financial toxicity 1 week and 12 weeks postsurgery (p < .001). Lower socioeconomic status (SES) was associated with lower out-of-pocket costs at each time point (p = .002-.013). One week postsurgery, participants with lower SES reported financial toxicity scores 1.02 points higher than participants with higher SES (95% confidence interval [CI], 0.08-1.95). Black and non-White/non-Black participants reported financial toxicity scores 1.91 (95% CI, 0.46-3.37) and 2.55 (95% CI, 1.11-3.99) points higher than White participants. Older (65+ years) participants reported financial toxicity scores 2.58 points lower than younger (<65 years) participants (95% CI, -3.41, -1.74). Younger participants reported significantly higher financial toxicity at each time point. DISCUSSION: Younger age, non-White race, and lower SES were associated with higher financial toxicity regardless of costs. Out-of-pocket costs increased over time and were positively associated with financial toxicity. Future work should reduce the impact of cancer care costs among vulnerable groups. IMPLICATIONS FOR PRACTICE: This study was one of the first to examine out-of-pocket costs and financial toxicity up to 1 year after breast cancer surgery. Younger age, Black race, race other than Black or White, and lower socioeconomic status were associated with higher financial toxicity. Findings highlight the importance of addressing patients' financial toxicity in several ways, particularly for groups vulnerable to its effects.

A Mixed-Methods Evaluation of Patient Education Materials for Colorectal Cancer.

BACKGROUND: Patient education materials are created by professional organizations to inform patients about their disease and its treatment. However, it remains unclear if these materials are appropriate for patients. OBJECTIVE: This study aims to broadly evaluate the education materials for patients with colorectal cancer. DESIGN: Patient education materials from the National Comprehensive Cancer Network, the National Cancer Institute, and the American Society of Colon and Rectal Surgeons were assessed quantitatively by using 1) the Flesch-Kincaid readability formula and 2) the Patient Education Material Assessment Tool. The Patient Education Material Assessment Tool scores materials in 2 domains: understandability and actionability. These materials were further evaluated qualitatively via an exploratory focus group with patients and their caregivers (n = 5) and semi-structured interviews with board-certified/eligible colorectal surgeons (n = 10). SETTING: This study was conducted at academic centers and a regional professional society meeting. PARTICIPANTS: The mean patient age was 63. Most surgeons (8/10) practiced in an academic setting, and 4/10 were female. MAIN OUTCOME MEASURES: The primary outcomes measured were reading grade level and domain scores for the Patient Education Material Assessment Tool. Qualitative data were recorded, transcribed, and coded. Themes were generated through data interpretation and data reduction. RESULTS: Materials ranged from 7th to 11th grade reading level. National Comprehensive Cancer Network materials scored highest for understandability (92.2% ± 6.1%, mean ± SD), followed by National Cancer Institute (84.0% ± 6.6%) and American Society of Colon and Rectal Surgeons (82.2% ± 6.3%) materials. Actionability scores varied; the National Comprehensive Cancer Network materials scored 82.5% ± 1.7%, whereas the National Cancer Institute and American Society of Colon and Rectal Surgeons materials scored 23.3% ± 6.7% and 50.0% ± 8.2%. Critical gaps were identified in the content of these materials. Patients wanted more information about self-care, both emotional and physical. Specifically, patients sought details about postoperative bowel function. Whereas surgeons wanted information about the typical hospital course and recovery, all wanted materials to be customizable. LIMITATIONS: A limited number of materials were reviewed, and patient focus groups were exploratory. CONCLUSIONS: Commonly available printed education materials for colorectal cancer are written at a high reading grade level, vary in their usability, and neglect important details about postoperative recovery. See Video Abstract at http://links.lww.com/DCR/B535. EVALUACIN DE MTODOS MIXTOS DE MATERIALES EDUCATIVOS PARA PACIENTES SOBRE CNCER COLORECTAL: ANTECEDENTES:Los materiales educativos para pacientes son creados por organizaciones profesionales para informar a los pacientes sobre su enfermedad y su tratamiento. Sin embargo, no está claro si estos materiales son apropiados para los pacientes.OBJETIVO:Evaluar ampliamente los materiales para el cáncer colorrectal.DISEÑO:Los materiales educativos para pacientes de la Red Nacional Integral del Cáncer (NCCN), el Instituto Nacional del Cáncer (NCI) y la Sociedad Americana de Cirujanos de Colon y Recto (ASCRS) se evaluaron cuantitativamente utilizando (1) la fórmula de legibilidad de Flesch-Kincaid y (2) la herramienta de evaluación de material educativo para pacientes. La Herramienta de evaluación de materiales educativos para pacientes califica los materiales en dos dominios: comprensibilidad y viabilidad. Estos materiales fueron evaluados cualitativamente a través de un grupo de enfoque exploratorio con pacientes y sus cuidadores (n = 5) y entrevistas semiestructuradas con cirujanos colorrectales certificados o elegibles para certificación por el consejo (n = 10).ESCENARIO:Centros académicos y un encuentro regional de una sociedad profesional.PACIENTES:La edad media de los pacientes fue de 63 años. La mayoría de los cirujanos (8/10) practicaban en un entorno académico, y 4/10 eran mujeres.PRINCIPALES MEDIDAS DE RESULTADO:Nivel de grado de lectura y puntajes de dominios para la Herramienta de evaluación de materiales educativos para pacientes. Los datos cualitativos se registraron, transcribieron y codificaron. Los temas se generaron mediante la interpretación y la reducción de datos.RESULTADOS:Los materiales variaron desde el nivel de lectura del 7° al 11° grado. Los materiales de la NCCN obtuvieron la puntuación más alta en comprensibilidad (92.2 ± 6.1%, media ± DE), seguidos por los materiales de NCI (84.0 ± 6.6%) y ASCRS (82.2 ± 6.3%). Los puntajes de viabilidad variaron; Los materiales de NCCN obtuvieron una puntuación de 82.5 ± 1.7%, mientras que los materiales de NCI y ASCRS obtuvieron una puntuación de 23.3 ± 6.7% y 50.0 ± 8.2%, respectivamente. Se identificaron lagunas críticas en el contenido de estos materiales. Los pacientes querían más información sobre el autocuidado, tanto emocional como físico. Específicamente, los pacientes buscaron detalles sobre la función intestinal posoperatoria. Mientras que los cirujanos querían información sobre el curso hospitalario típico y la recuperación, y todos querían que los materiales fueran personalizables.LIMITACIONES:Se revisó una cantidad limitada de materiales y los grupos de enfoque de pacientes fueron exploratorios.CONCLUSIONES:Los materiales educativos impresos comúnmente disponibles para el cáncer colorrectal están escritos a un alto nivel de grado de lectura, varían en su usabilidad y omiten detalles importantes sobre la recuperación postoperatoria. Consulte Video Resumen en http://links.lww.com/DCR/B535.

Processes for evidence summarization for patient decision aids: A Delphi consensus study.

BACKGROUND: Patient decision aids (PDAs) should provide evidence-based information so patients can make informed decisions. Yet, PDA developers do not have an agreed-upon process to select, synthesize and present evidence in PDAs. OBJECTIVE: To reach the consensus on an evidence summarization process for PDAs. DESIGN: A two-round modified Delphi survey. SETTING AND PARTICIPANTS: A group of international experts in PDA development invited developers, scientific networks, patient groups and listservs to complete Delphi surveys. DATA COLLECTION: We emailed participants the study description and a link to the online survey. Participants were asked to rate each potential criterion (omit, possible, desirable, essential) and provide qualitative feedback. ANALYSIS: Criteria in each round were retained if rated by >80% of participants as desirable or essential. If two or more participants suggested rewording, reordering or merging, the steering group considered the suggestion. RESULTS: Following two Delphi survey rounds, the evidence summarization process included defining the decision, reporting the processes and policies of the evidence summarization process, assembling the editorial team and managing (collect, manage, report) their conflicts of interest, conducting a systematic search, selecting and appraising the evidence, presenting the harms and benefits in plain language, and describing the method of seeking external review and the plan for updating the evidence (search, selection and appraisal of new evidence). CONCLUSION: A multidisciplinary stakeholder group reached consensus on an evidence summarization process to guide the creation of high-quality PDAs. PATIENT CONTRIBUTION: A patient partner was part of the steering group and involved in the development of the Delphi survey.

Development and validation of the Cambridge Multimorbidity Score.

BACKGROUND: Health services have failed to respond to the pressures of multimorbidity. Improved measures of multimorbidity are needed for conducting research, planning services and allocating resources. METHODS: We modelled the association between 37 morbidities and 3 key outcomes (primary care consultations, unplanned hospital admission, death) at 1 and 5 years. We extracted development (n = 300 000) and validation (n = 150 000) samples from the UK Clinical Practice Research Datalink. We constructed a general-outcome multimorbidity score by averaging the standardized weights of the separate outcome scores. We compared performance with the Charlson Comorbidity Index. RESULTS: Models that included all 37 conditions were acceptable predictors of general practitioner consultations (C-index 0.732, 95% confidence interval [CI] 0.731-0.734), unplanned hospital admission (C-index 0.742, 95% CI 0.737-0.747) and death at 1 year (C-index 0.912, 95% CI 0.905-0.918). Models reduced to the 20 conditions with the greatest combined prevalence/weight showed similar predictive ability (C-indices 0.727, 95% CI 0.725-0.728; 0.738, 95% CI 0.732-0.743; and 0.910, 95% CI 0.904-0.917, respectively). They also predicted 5-year outcomes similarly for consultations and death (C-indices 0.735, 95% CI 0.734-0.736, and 0.889, 95% CI 0.885-0.892, respectively) but performed less well for admissions (C-index 0.708, 95% CI 0.705-0.712). The performance of the general-outcome score was similar to that of the outcome-specific models. These models performed significantly better than those based on the Charlson Comorbidity Index for consultations (C-index 0.691, 95% CI 0.690-0.693) and admissions (C-index 0.703, 95% CI 0.697-0.709) and similarly for mortality (C-index 0.907, 95% CI 0.900-0.914). INTERPRETATION: The Cambridge Multimorbidity Score is robust and can be either tailored or not tailored to specific health outcomes. It will be valuable to those planning clinical services, policymakers allocating resources and researchers seeking to account for the effect of multimorbidity.

Using Ancillary Sociodemographic Data to Identify Sexual Minority Adults Among Those Responding "Something Else" or "Don't Know" to Sexual Orientation Questions.

BACKGROUND: General population surveys are increasingly offering broader response options for questions on sexual orientation-for example, not only gay or lesbian, but also "something else" (SE) and "don't know" (DK). However, these additional response options are potentially confusing for those who may not know what the terms mean. Researchers studying sexual orientation-based disparities face difficult methodological trade-offs regarding how best to classify respondents identifying with the SE and DK categories. OBJECTIVES: Develop respondent-level probabilities of sexual minority orientation without excluding or misclassifying the potentially ambiguous SE and DK responses. Compare 3 increasingly inclusive analytic approaches for estimating health disparities using a single item: (a) omitting SE and DK respondents; (b) classifying SE as sexual minority and omitting DK; and (c) a new approach classifying only SE and DK respondents with >50% predicted probabilities of being sexual minorities as sexual minority. MATERIALS AND METHODS: We used the sociodemographic information and follow-up questions for SE and DK respondents in the 2013-2014 National Health Interview Survey to generate predicted probabilities of identifying as a sexual minority adult. RESULTS: About 94% of the 144 SE respondents and 20% of the 310 DK respondents were predicted to identify as a sexual minority adult, with higher probabilities for younger, wealthier, non-Hispanic white, and urban-dwelling respondents. Using a more specific definition of sexual minority orientation improved the precision of health and health care disparity estimates. CONCLUSIONS: Predicted probabilities of sexual minority orientation may be used in this and other surveys to improve representation and categorization of those who identify as a sexual minority adult.

Current and future cardiovascular disease risk assessment in the European Union: an international comparative study.

Background: Risk assessment is central to primary prevention of cardiovascular disease (CVD), but there remains a need to better understand the use of evidence-based interventions in practice. This study examines: (i) the policies and guidelines for risk assessment in Europe, (ii) the use of risk assessment tools in clinical practice and (iii) the barriers to, and facilitators of, risk assessment. Methods: Data were collected from academics, clinicians and policymakers in an online questionnaire targeted at experts from all European Union member states, and in 8 in-depth country case studies that were developed from a targeted literature review and 36 interviews. Results: The European Society of Cardiology (ESC) produces European guidelines for CVD risk assessment and recommends the Systematic COronary Risk Evaluation tool, which is the most widely used risk assessment tool in Europe. The use of risk assessment tools is variable. Lack of time and resources are important barriers. Integrating risk assessment tools into clinical systems and providing financial incentives to carry out risk assessments could increase implementation. Novel biomarkers would need to be supported by evidence of their clinical effectiveness and cost-effectiveness to be introduced in clinical practice. These findings were consistent across Europe. Conclusions: Efforts to improve the assessment of CVD risk in clinical practice should be carried out by or in collaboration with, the ESC. Increasing the use of existing risk assessment tools is likely to offer greater gains in primary prevention than the development of novel biomarkers.

Do Differential Response Rates to Patient Surveys Between Organizations Lead to Unfair Performance Comparisons?: Evidence From the English Cancer Patient Experience Survey.

BACKGROUND: Patient surveys typically have variable response rates between organizations, leading to concerns that such differences may affect the validity of performance comparisons. OBJECTIVE: To explore the size and likely sources of associations between hospital-level survey response rates and patient experience. RESEARCH DESIGN, SUBJECTS, AND MEASURES: Cross-sectional mail survey including 60 patient experience items sent to 101,771 cancer survivors recently treated by 158 English NHS hospitals. Age, sex, race/ethnicity, socioeconomic status, clinical diagnosis, hospital type, and region were available for respondents and nonrespondents. RESULTS: The overall response rate was 67% (range, 39% to 77% between hospitals). Hospitals with higher response rates had higher scores for all items (Spearman correlation range, 0.03-0.44), particularly questions regarding hospital-level administrative processes, for example, procedure cancellations or medical note availability.From multivariable analysis, associations between individual patient experience and hospital-level response rates were statistically significant (P<0.05) for 53/59 analyzed questions, decreasing to 37/59 after adjusting for case-mix, and 25/59 after further adjusting for hospital-level characteristics.Predicting responses of nonrespondents, and re-estimating hypothetical hospital scores assuming a 100% response rate, we found that currently low performing hospitals would have attained even lower scores. Overall nationwide attainment would have decreased slightly to that currently observed. CONCLUSIONS: Higher response rate hospitals have more positive experience scores, and this is only partly explained by patient case-mix. High response rates may be a marker of efficient hospital administration, and higher quality that should not, therefore, be adjusted away in public reporting. Although nonresponse may result in slightly overestimating overall national levels of performance, it does not appear to meaningfully bias comparisons of case-mix-adjusted hospital results.

Informal carers' health-related quality of life and patient experience in primary care: evidence from 195,364 carers in England responding to a national survey.

BACKGROUND: We aim to describe the health-related quality of life of informal carers and their experiences of primary care. METHODS: Responses from the 2011-12 English General Practice Patient Survey, including 195,364 informal carers, were analysed using mixed effect logistic regressions controlling for age, gender, ethnicity and social deprivation to describe carer health-related quality of life (mobility, self-care, usual activities, pain, and anxiety/depression, measured using EQ-5D) and primary care experience (access, continuity and communication). RESULTS: Informal carers reported poorer health-related quality of life than non-carers of similar age, gender, ethnicity and social deprivation. Increasing caring commitment was associated with worse EQ-5D scores, with carers of 50+ hours a week scoring 0.05 points lower than non-carers (95 % CI 0.05 to 0.04), equivalent to 18 fewer days of full health annually. Considering each domain of EQ-5D separately, carers of 50+ hours/week were more likely to report pain OR = 1.53 (1.50-1.57), p < 0.0001, and anxiety/depression OR = 1.69 (1.66-1.73), p < 0.0001, than non-carers. Younger carers scored lower on EQ-5D than non-carer peers but the converse was true among over-85s. In the most deprived areas carers reported the equivalent of 37 fewer days of full health annually than carers in the most affluent areas. On average, carers reported poorer patient experiences in all areas of primary care than non-carers (odds ratios 0.84-0.97), with this difference being most marked in the domain of access. CONCLUSIONS: Informal carers experience a double disadvantage of poorer health-related quality of life and poorer patient experience in primary care. We find no evidence for health benefits of caregiving. We recommend physicians identify and treat carer health problems, including pain and anxiety/depression, particularly among young, deprived and high time-commitment carers. Improving patient experience for carers, including access to primary care, should be a priority.

Variation in promptness of presentation among 10,297 patients subsequently diagnosed with one of 18 cancers: evidence from a National Audit of Cancer Diagnosis in Primary Care.

Cancer awareness public campaigns aim to shorten the interval between symptom onset and presentation to a doctor (the 'patient interval'). Appreciating variation in promptness of presentation can help to better target awareness campaigns. We explored variation in patient intervals recorded in consultations with general practitioners among 10,297 English patients subsequently diagnosed with one of 18 cancers (bladder, brain, breast, colorectal, endometrial, leukaemia, lung, lymphoma, melanoma, multiple myeloma, oesophageal, oro-pharyngeal, ovarian, pancreatic, prostate, renal, stomach, and unknown primary) using data from of the National Audit of Cancer Diagnosis in Primary Care (2009-2010). Proportions of patients with 'prompt'/'non-prompt' presentation (0-14 or 15+ days from symptom onset, respectively) were described and respective odds ratios were calculated by multivariable logistic regression. The overall median recorded patient interval was 10 days (IQR 0-38). Of all patients, 56% presented promptly. Prompt presentation was more frequent among older or housebound patients (p < 0.001). Prompt presentation was most frequent for bladder and renal cancer (74% and 70%, respectively); and least frequent for oro-pharyngeal and oesophageal cancer (34% and 39%, respectively, p <.001). Using lung cancer as reference, the adjusted odds ratios of non-prompt presentation were 2.26 (95% confidence interval 1.57-3.25) and 0.42 (0.34-0.52) for oro-pharyngeal and bladder cancer, respectively. Sensitivity analyses produced similar findings. Routinely recorded patient interval data reveal considerable variation in the promptness of presentation. These findings can help to prioritise public awareness initiatives and research focusing on symptoms of cancers associated with greater risk of non-prompt presentation, such as oro-pharyngeal and oesophageal cancer.

Cancer patient experience, hospital performance and case mix: evidence from England.

UNLABELLED:   AIMS: This study aims to explore differences between crude and case mix-adjusted estimates of hospital performance with respect to the experience of cancer patients. MATERIALS & METHODS: This study analyzed the English 2011/2012 Cancer Patient Experience Survey covering all English National Health Service hospitals providing cancer treatment (n = 160). Logistic regression analysis was used to predict hospital performance for each of the 64 evaluative questions, adjusting for age, gender, ethnic group and cancer diagnosis. The degree of reclassification was explored across three categories (bottom 20%, middle 60% and top 20% of hospitals). RESULTS: There was high concordance between crude and adjusted ranks of hospitals (median Kendall's τ = 0.84; interquartile range: 0.82-0.88). Across all questions, a median of 5.0% (eight) of hospitals (interquartile range: 3.8-6.4%; six to ten hospitals) moved out of the extreme performance categories after case mix adjustment. CONCLUSION: In this context, patient case mix has only a small impact on measured hospital performance for cancer patient experience.