Disease landscape of advanced HER2-breast cancer patients by treatment line in three EU countries and USA.

Aim: To report treatment patterns and quality of life (QoL) in HER2-negative advanced breast cancer patients.Methods: Data were drawn from a cross-sectional survey in Europe and USA.Results: Hormone plus targeted therapy was the most frequent first-line (1L, 62%) and second-line (2L, 45%) treatment for HR+/HER2-patients. Chemotherapy was most frequent at third-line or greater (3L+, 39%) for HR+/HER2- patients, 2L (51%) and 3L+ (48%) for triple negative breast cancer (TNBC) patients. Time to progression was 13.8 (2L) and 11.0 (3L+) months for HR+/HER2- patients. No comparisons were observed for TNBC patients. EQ-5D-5L scores were highest in patients at 1L and lowest at 3L+.Conclusion: Reduced QoL and treatment response were reported in patients at later lines of therapy.

Breast cancer is the most common cancer in women. Differences in survival are seen depending on how widespread or advanced the cancer is, how many different treatments the patient has been given, as well as whether certain receptors on the tumor are present or absent. Many new treatments are available which can target these receptors. These treatments have improved survival in patients with advanced breast cancer, but other benefits for the patient are not always clear. In addition, differences between countries are possible as official guidance can vary. This study aimed to understand these issues, by asking physicians and their patients across Europe and USA for their views on quality of life and satisfaction with their treatments. We found that, in general, physicians prescribed treatments as recommended in the treatment guidelines. As breast cancer progressed and treatment stopped working, patients were switched on to different treatments. Survival, quality of life and treatment satisfaction were all worse in patients who had switched treatments. It appears that the patients lose confidence that their new treatment will work to improve their quality of life. We also saw differences in some of these outcomes between Europe and USA, which were likely due to differences in the treatment guidelines between countries. Both quality of life and treatment satisfaction are important for the well-being of patients with advanced breast cancer as they now live longer with these new treatments. This should be considered by physicians and taken into account for future work.

Association of Depression Risk with Patient Experience, Healthcare Expenditure, and Health Resource Utilization Among Adults with Atherosclerotic Cardiovascular Disease.

BACKGROUND: Approximately 20% of patients with atherosclerotic cardiovascular disease (ASCVD) suffer from depression. OBJECTIVE: To compare healthcare expenditures and utilization, healthcare-related quality of life, and patient-centered outcomes among ASCVD patients, based on their risk for depression (among those without depression), and those with depression (vs. risk-stratified non-depressed). DESIGN AND SETTING: The 2004-2015 Medical Expenditure Panel Survey (MEPS) was used for this study. PARTICIPANTS: Adults ≥ 18 years with a diagnosis of ASCVD, ascertained by ICD-9 codes and/or self-reported data. Individuals with a diagnosis of depression were identified by ICD-9 code 311. Participants were stratified by depression risk, based on the Patient Health Questionnaire-2. RESULTS: A total of 19,840 participants were included, translating into 18.3 million US adults, of which 8.6% (≈ 1.3 million US adults) had a high risk for depression and 18% had a clinical diagnosis of depression. Among ASCVD patients without depression, those with a high risk (compared with low risk) had increased overall and out-of-pocket expenditures (marginal differences of $2880 and $287, respectively, both p < 0.001), higher odds for resource utilization, and worse patient experience and healthcare quality of life (HQoL). Furthermore, compared with individuals who had depression, participants at high risk also reported worse HQoL and had higher odds of poor perception of their health status (OR 1.83, 95% CI [1.50, 2.23]) and poor patient-provider communication (OR 1.29 [1.18, 1.42]). LIMITATION: The sample population includes self-reported diagnosis of ASCVD; therefore, the risk of underestimation of the cohort size cannot be ruled out. CONCLUSION: Almost 1 in 10 individuals with ASCVD without diagnosis of depression is at high risk for it and has worse health outcomes compared with those who already have a diagnosis of depression. Early recognition and treatment of depression may increase healthcare efficiency, positive patient experience, and HQoL among this vulnerable population.

Symptom Domain Groups of the Patient-Reported Outcomes Measurement Information System Tools Independently Predict Hospitalizations and Re-hospitalizations in Cirrhosis.

BACKGROUND: Patient-Reported Outcomes Measurement Information System (PROMIS) tools can identify health-related quality of life (HRQOL) domains that could differentially affect disease progression. Cirrhotics are highly prone to hospitalizations and re-hospitalizations, but the current clinical prognostic models may be insufficient, and thus studying the contribution of individual HRQOL domains could improve prognostication. AIM: Analyze the impact of individual HRQOL PROMIS domains in predicting time to all non-elective hospitalizations and re-hospitalizations in cirrhosis. METHODS: Outpatient cirrhotics were administered PROMIS computerized tools. The first non-elective hospitalization and subsequent re-hospitalizations after enrollment were recorded. Individual PROMIS domains significantly contributing toward these outcomes were generated using principal component analysis. Factor analysis revealed three major PROMIS domain groups: daily function (fatigue, physical function, social roles/activities and sleep issues), mood (anxiety, anger, and depression), and pain (pain behavior/impact) accounted for 77% of the variability. Cox proportional hazards regression modeling was used for these groups to evaluate time to first hospitalization and re-hospitalization. RESULTS: A total of 286 patients [57 years, MELD 13, 67% men, 40% hepatic encephalopathy (HE)] were enrolled. Patients were followed at 6-month (mth) intervals for a median of 38 mths (IQR 22-47), during which 31% were hospitalized [median IQR mths 12.5 (3-27)] and 12% were re-hospitalized [10.5 mths (3-28)]. Time to first hospitalization was predicted by HE, HR 1.5 (CI 1.01-2.5, p = 0.04) and daily function PROMIS group HR 1.4 (CI 1.1-1.8, p = 0.01), independently. In contrast, the pain PROMIS group were predictive of the time to re-hospitalization HR 1.6 (CI 1.1-2.3, p = 0.03) as was HE, HR 2.1 (CI 1.1-4.3, p = 0.03). CONCLUSIONS: Daily function and pain HRQOL domain groups using PROMIS tools independently predict hospitalizations and re-hospitalizations in cirrhotic patients.

Knowledge in Inflammatory Bowel Disease: Translation to Portuguese, Validation, and Clinical Application of the IBD-KNOW Questionnaire.

Background/Aims: Inflammatory bowel disease (IBD)-related knowledge empowers patients, providing the development of adaptative coping strategies. Recently, a more comprehensive questionnaire for evaluating IBD-related knowledge was developed, the IBD-KNOW. The main aim of our study was to translate to Portuguese and validate the IBD-KNOW questionnaire. We also explored the predictors of high scores of disease-related knowledge and the effect of knowledge on health-related quality of life (HRQoL) and therapeutic adherence. Methods: This is an observational, unicentric, and cross-sectional study. We translated and adapted the original English version of the IBD-KNOW questionnaire into Portuguese. Afterwards, IBD patients in the outpatient clinics were invited to fill out a multimodal form including the Portuguese version of IBD-KNOW, a visual analogue scale (VAS) of self-perceived knowledge, the Portuguese version of Short IBD Questionnaire (SIBDQ) and the Portuguese version of Morisky Adherence Scale 8-item (MMAS-8). Demographic and disease characteristics were collected. We assessed validity (through discriminate validity among non-IBD volunteers and correlation between IBD-KNOW and VAS) and reliability (through internal consistency, test-retest, and intraclass correlation). Statistical analysis was performed using SPSS version 25.0. Results: The mean IBD-KNOW score was significantly different among non-IBD validation group (doctors: 23, nurses: 18, and non-medical volunteers: 12, p < 0.001). IBD-KNOW showed a high internal consistency (Cronbach's α 0.78) and intraclass correlation (0.90). As expected, the IBD-KNOW score was positively correlated with VAS for self-perceived knowledge (r = 0.45, p < 0.001). One hundred and one patients with IBD (54 with ulcerative colitis and 47 with Crohn's disease) completed the questionnaire at baseline. Multivariate analyses showed that a high IBD-KNOW score was associated with longer disease duration (OR: 2.59 [CI 1.11-5.74]; p = 0.04), previous hospitalization (OR: 3.63 [CI 1.301-9.96]; p = 0.01), current biologic treatment (OR: 3.37 [CI 1.31-8.65]; p = 0.02), and higher educational level (OR: 4.66 [CI 1.74-10.21]; p = 0.02). Moreover, there was no significant correlation between overall IBD-KNOW and SIBDQ, nor between IBD treatment adherence (MMAS-8 = 8) and a higher mean IBD-KNOW score (p = 0.552). Conclusion: The Portuguese version of IBD-KNOW is a simple, valid, and reliable tool for assessing IBD-related knowledge. Longer disease duration, hospitalization, use of biologics, and higher educational level are associated with higher levels of knowledge. Higher patient knowledge was not associated with higher HRQoL and adherence to therapy.

Introdução/objetivos: O conhecimento relacionado com a Doença Inflamatória Intestinal (DII) visa capacitar os doentes, proporcionando o desenvolvimento de estratégias adaptativas de coping. Recentemente, foi desenvolvido um questionário mais abrangente para avaliar os conhecimentos relacionados com a DII, o IBD-KNOW. O principal objetivo do nosso estudo foi traduzir para português e validar o questionário IBD-KNOW. Também explorámos os preditores de um elevado nível de conhecimento relacionado com a DII e avaliámos o impacto do conhecimento na qualidade de vida associada a cuidados de saúde (QVACS) e na adesão terapêutica. Métodos: Este é um estudo observacional, unicêntrico e transversal. Traduzimos e adaptámos para português a versão original inglesa do questionário IBD-KNOW. Posteriormente, os doentes com DII de ambulatório foram convidados a preencher um questionário multimodal que incluía, a versão portuguesa do IBD-KNOW, uma escala visual analógica (EVA) de autoperceção do conhecimento, a versão portuguesa do Short IBD Questionnaire (SIBDQ) e a versão portuguesa do Morisky Adherence Scale 8-item (MMAS-8). Foram colhidos dados referentes a aspetos demográficos e da doença. Avaliámos a validade (através da validade discriminatória entre voluntários sem DII e da correlação entre IBD-KNOW e a EVA) e a fiabilidade (através da consistência interna, do teste-reteste e da correlação intraclasse). A análise estatística foi realizada utilizando a versão 25.0 do SPSS. Resultados: A pontuação média do IBD-KNOW foi significativamente diferente entre os voluntários não-DII (médicos: 23, enfermeiros: 18 e voluntários não-médicos: 12, p < 0,001). O IBD-KNOW mostrou uma elevada consistência interna (Cronbach's α 0,78) e uma correlação intraclasse (0,90). Como esperado, a pontuação IBD-KNOW correlacionou-se positivamente com a EVA de autoperceção do conhecimento (r=0,45, p < 0,001). Cento e um doentes com DII (54 com colite ulcerosa e 47 com doença de Crohn) preencheram o questionário. A análise multivariada mostrou valores médios de IBD-KNOW superiores em indivíduos com doença de longa duração (OR: 2,59; [IC 1,11-5,74] p=0,04), hospitalização prévia (OR 3,63 [IC 1,301-9,96]; p=0,01), sob tratamento biológico atual (OR 3,37 [1,31-8,65]; p=0,02) e com nível educacional superior (OR 4,66 [IC 1,74-10,21]; p=0,02). Além disso, não houve correlação significativa entre IBD-KNOW e SIBDQ, nem entre a adesão ao tratamento IBD (MMAS-8=8) e um IBD-KNOW acima da média (p=0,552). Conclusão: A versão portuguesa do IBD-KNOW é uma ferramenta simples, válida e fiável para avaliar os conhecimentos relacionados com a DII. Uma maior duração da doença, hospitalização, utilização de biológicos e um nível de educação mais elevado estão associados a níveis de conhecimento mais elevados. Na nossa coorte, níveis superiores de conhecimento não se associaram a melhor qualidade de vida nem a maior adesão à terapêutica.