Identifying education, knowledge and communication gaps in biomarker testing between YO-CRC patients, caregivers, and their medical team.

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. e16115-e16115
Author(s):  
Kim Lynn Newcomer ◽  
Danielle Peterson ◽  
Ronit Yarden ◽  
Keyword(s):  
Online Survey ◽  
Medical Information ◽  
Treatment Plan ◽  
Treatment Options ◽  
Stage Iv ◽  
Public Health Issue ◽  
Medical Team ◽  
Cross Sectional ◽  
Patient Reported ◽  
Biomarker Testing

e16115 Background: The proportion of new young-onset colorectal cancer (YO-CRC) cases diagnosed in young people (20-49) had doubled over the past 3 decades, and it is becoming an alarming public health issue. YO-CRC patients face unique clinical challenges, as many are diagnosed at advanced stages of the disease and subjected to aggressive treatments. With the increase of targeted therapies and precision medicine available, NCCN and ASCO guidelines recommend that all stage IV, metastatic CRC patients be tested for 4 biomarkers in addition to MSI-H. However, not all eligible patients benefit from biomarker testing and biomarker-driven therapies. Methods: We conducted an online survey to assess patients, survivors and caregivers’ knowledge and understanding of biomarker testing and whether they feel empowered to discuss with their doctor different treatment options based on their unique tumor characteristics and their preferences. Results: The cross-sectional study was completed by patients and survivors (N = 885) and unrelated caregivers of YO-CRC patients (N = 203). The median age of patients and survivors was 42, and the median age of caregivers was also 42. The majority of the participants were college graduates. Although 82% of stage IV, YO-CRC patients felt informed before treatment began, only 70% indicated their tumor was tested for biomarkers, and 54% of them received biomarker testing before treatment initiation. Only 33% of patients reported they became aware of biomarkers by their medical team while others indicated resources such as internet searches, family and friends, or patient navigators. Many of the caregivers who reported that they served as a liaison between patients and medical information retrieval felt that they did not fully understand the critical aspects of the patients' medical treatment plan. Conclusions: Multiple studies have shown that patient-centered care improves patients’ outcomes. Our organization encourages patients and their families to use medical information to navigate their journey. Our patient-reported study suggests that there are gaps in patients’ and caregiver’s understanding of biomarker testing that may hinder patient's empowerment for reaching evidence-based shared-decision treatment plan together with their physicians.

Precision medicine in colorectal cancer: Gaps in patients’ literacy of biomarkers and genetic testing.

2020 ◽  
Vol 38 (4_suppl) ◽  
pp. 55-55
Author(s):  
Ronit Yarden ◽  
Tamara Springer
Keyword(s):  
Colorectal Cancer ◽  
Online Survey ◽  
Stage Iv ◽  
The United States ◽  
Genetic Alterations ◽  
Tumor Biomarker ◽  
Medical Team ◽  
Kras Mutations ◽  
Cross Sectional ◽  
Biomarker Testing

55 Background: Colorectal cancer (CRC) is the second leading cause of cancer death in the united states. Despite some advances, mortality is high and the 5-year overall survival from metastatic disease (mCRC) is only 14%. CRC is a heterogeneous disease with multiple subtypes defined by location, microsatellite integrity, specific genetic alterations and potentially age. The identification of specific driving mutation/s led to the development of targeted therapies. Patients are eligible for these treatments based on their personalized tumor biomarker profile. ASCO guidelines recommend that all patients with mCRC are tested for KRAS mutations. This mutation is present in ~40% of CRC patients, and serves as a biomarker for lack of response to EGFR therapy. Similarly, high microsatellite instability (MSI-H) suggests an inferior response to commonly used chemotherapy and favorable response to immunotherapy. Methods: We conducted an online survey to assess patients, survivors and caregivers’ knowledge and understanding of biomarker testing. Results: Among the 210 participants in this cross-sectional study, 81% of participants reported ‘no familiarity’ with the term biomarkers at the time of diagnosis, while 73% reported awareness at the time of the survey. Yet, when presented with specific biomarkers, majority of participants were not familiar with any of those biomarkers. Of the 103 stage IV respondents, only 14% were familiar with the four common CRC biomarkers, and only 1 in 4 reported their tumor was tested prior to treatment initiation. Nearly half of the respondents cited their physician and medical team as the main source of biomarker information (46%) while the other half reported their medical team never informed them of biomarkers. Overall, 50% of participants indicated that advocacy groups, medical websites, and various online resources were their main sources of biomarker information. Disparities of biomarker awareness were noted based on gender, age, and area of residency. Conclusions: Taken together, patients do not fully comprehend the meaning and implications of biomarker testing. Medical teams should make a greater effort to inform their patients early on in their treatment.

Communicating Oncologic Prognosis with Empathy (COPE).

2018 ◽  
Vol 36 (34_suppl) ◽  
pp. 38-38
Author(s):  
Farya Phillips ◽  
Boone W Goodgame ◽  
Barbara L Jones
Keyword(s):  
Treatment Plan ◽  
Treatment Options ◽  
Accurate Information ◽  
Healthcare Team ◽  
Medical Team ◽  
Patient Centered ◽  
Incurable Cancer ◽  
Patient Reported ◽  
Post Test

38 Background: Clear communication between patients and providers is imperative to maximize patient outcomes, particularly for patients with incurable cancer who require prompt engagement in decision-making. In response to the need to engage in quality patient-centered communication, an interprofessional team, representing medicine, nursing, social work, and spiritual care developed a simple, single-page tool that summarizes the prognosis and treatment plan for patients with incurable cancers. This pilot study evaluates the communication guide, Communicating Oncologic Prognosis with Empathy (COPE), for discussing prognosis and treatment options for cancer patients. Methods: A pilot test of 30 participants with incurable cancer was completed at an oncology clinic. The communication guide was evaluated using a pre- and post-test design, participants completed a prognosis and treatment perception survey (PTPQ) prior to their first oncology appointment. Patients then met with their oncologist and the COPE guide was used to guide the discussion and patients received a copy of the COPE guide. The COPE guide was placed in the patient chart and other members of the healthcare team were able to use the tool to provide the patient with support and explore the patient’s response to information received. Patients completed the post-test PTPQ at 4 week follow up and completed exit interviews to assess patient reported impact on communication with medical team, caregivers, and quality of life. Results: Key findings revealed participants prefer receiving detailed information about prognosis and have differing perceptions about goals of treatment compared to the oncology team. The tool seemed to facilitate mostly accurate information recall regarding prognosis and treatment options. Conclusions: Despite the high value patients placed on knowing about prognosis and quality of communication with their medical team, the majority reported incongruent goals of treatment and likelihood of cure compared with their oncologist, highlighting major gaps in patients’ understanding of their prognosis. The COPE guide serves as a promising mechanism to enhance patient-centered communication about prognosis and treatment for patients with incurable cancer.

Experience with colorectal cancer: Analysis of patient web forums.

2012 ◽  
Vol 30 (4_suppl) ◽  
pp. 496-496 ◽  
Author(s):  
Kathy Beusterien ◽  
Sarah Tsay ◽  
Yun Su ◽  
Mitra Corral ◽  
Shadi Gholizadeh ◽  
...  
Keyword(s):  
Colorectal Cancer ◽  
Side Effects ◽  
Emotional Distress ◽  
Treatment Options ◽  
Stage Iv ◽  
Cross Sectional ◽  
Life Styles ◽  
Patient Reported ◽  
Web Forums ◽  
The Impact

496 Background: Patient-reported outcomes are typically collected through structured questionnaires. Patient web forums provide a unique opportunity for patients to spontaneously post their experiences and thoughts about diseases and treatments. This study explored the impact of colorectal cancer (CRC) treatments in these forums. Methods: This was a cross-sectional qualitative analysis of web data. Two of the most active CRC web forums were identified using 4 criteria: site active for > 5 years, > 12,000 total posts on the forum, >20 individuals currently browsing, and > 10 new posts/day. All posts posted in Jul and Dec 2010 and Feb-Mar 2011 on the two forums were abstracted for review and coding using MaxQDA software. Results: A total of 1,654 posts, posted by 264 individuals, were identified on the two CRC web forums. Demographic and /or tumor information were identified for 83% of the posters. Of these, 83% were CRC patients and 17% were family members; 76% were females, and the mean age of the patients was 49 years. The majority had advanced cancer (44% stage IV or metastatic, 40% stage III). The most common topics were a variety of side effects (62.3% of posts), treatment response (13%), and impact on personal, social, and work lives, income and life styles, and resulting emotional distress (23.9%). The posters came to the online forums in part to have an emotional outlet. Another key motive was sharing experiences and seeking advice. Formal knowledge regarding the likelihood of response, magnitude of benefit, or side effects was absent however, leading to senses of uncertainty, anxiety, sometimes shock, and unrealistic expectations. On balance, although patients reported difficulties being on treatment, they also expressed resilience and appreciation for the availability of treatment options and the hope they provide. Conclusions: Online CRC communities provide patients with convenient and valuable emotional support and disease and treatment information. The profound impact of CRC and treatments goes beyond efficacy, toxicity, and structured quality of life scores. Systematic information and decision tools are needed to minimize uncertainties and help patients manage expectations and emotional distress.

scholarly journals The Public’s Perception of Interventions for Migraine Headache Disorders: A Crowdsourcing Population-Based Study

2019 ◽  
Vol 1 (2) ◽  
Author(s):  
Orr Shauly ◽  
Daniel J Gould ◽  
Ketan M Patel
Keyword(s):  
Migraine Headache ◽  
Treatment Options ◽  
The United States ◽  
Cost Of Care ◽  
Adverse Outcomes ◽  
Amazon Mechanical Turk ◽  
Cross Sectional ◽  
Economic Productivity ◽  
Migraine Headaches ◽  
Patient Reported

Abstract Background Migraine disorders are a leading cause of morbidity and decreased economic productivity in the United States among both men and women. As such, it is important to consider patient opinions, and have an accurate representation of the burden and sentiment toward currently available interventions among those suffering from migraines. Objectives The aim of the study was to assess patient options regarding adverse outcomes of the various treatment options available for migraine headaches. Methods A prospective cross-sectional study of volunteers recruited through an internet crowdsourcing service, Amazon Mechanical Turk©, was conducted. Surveys were administered to collect patient-reported opinions regarding adverse outcomes of both surgical and nonsurgical treatment options for migraine headaches. Results The prevalence of migraine headache across all study participants was 15.6% and varied slightly across participant demographics. Individuals ages 35–44 (2.73 migraines per month) experienced the fewest migraine and with the lowest severity. Those individuals ages 45+ experienced the most severe headaches (Visual Analog Scale = 44.23 mm). Additionally, the greatest migraine frequency and severity existed among those households with yearly income of $75,000–$100,000. The lowest injection therapy utility scores were obtained for adverse outcomes of hematoma (47.60 mm) and vertigo (54.40 mm). Conclusions Migraine headaches remains a significant problem among the US population, with an overall prevalence of 15.6% (approximately 50 million Americans). Additionally, physicians interesting in offering minimally invasive or surgical treatment for migraine headaches should focus on mitigating patient fears regarding clinical outcomes and cost of care.

Does Culture Matter? Young and Middle-Aged Iranian-American Adults’ Perspectives Regarding End-of-Life Care Planning

2021 ◽  
pp. 104990912110368
Author(s):  
Zahra Rahemi ◽  
Veronica Parker
Keyword(s):  
End Of Life ◽  
Online Survey ◽  
English Language ◽  
Treatment Options ◽  
Care Planning ◽  
Middle Aged ◽  
Cross Sectional ◽  
Comfort Care ◽  
Iranian American ◽  
Eol Care

Background: An increase of cultural diversity and treatment options offer opportunities and challenges related to end-of-life (EOL) care for healthcare providers and policymakers. EOL care planning can help reduce confusion and uncertainty when individuals and family members need to make decisions about EOL care options. Objective: The purpose of this study was to investigate preferences, attitudes, and behaviors regarding EOL care planning among young and middle-aged Iranian-American adults. Methods: A cross-sectional national sample of 251 Iranian-American adults completed surveys. Paper and online surveys in English and Persian were offered to potential participants. Results: All the participants completed online survey in English language. In incurable health conditions, 56.8% preferred hospitalization and intensive treatments. From the 40.6% participants who preferred comfort care, most preferred care at home (29.5%) compared to an institution (11.1%). Those who preferred hospitalization at EOL mostly preferred intensive and curative treatments. The mean score of attitudes toward advance decision-making was moderately high (11.48 ± 2.77). Favorable attitudes were positively associated with acculturation (r = .31, p < .001), age (r = .15, p < .05), and number of years living in the U.S. (r = .26, p < .001). Conversely, spirituality and favorable attitudes were negatively associated (r = −.17, p < .05). Conclusion: Immigrant and culturally diverse individuals have experienced different living and healthcare environments. These differences can influence their EOL care planning and decisions. Knowledge of diverse perspectives and cultures is essential to design culturally congruent plans of EOL care.

scholarly journals Homoprejudiced violence among Chinese men who have sex with men: A cross-sectional analysis in Guangzhou, China

2020 ◽  
Author(s):  
Dan Wu ◽  
Eileen Yang ◽  
Wenting Huang ◽  
Weiming Tang ◽  
Huifang Xu ◽  
...  
Keyword(s):  
Sexual Orientation ◽  
Online Survey ◽  
Descriptive Analysis ◽  
Strong Association ◽  
Public Health Issue ◽  
Marriage Education ◽  
Cross Sectional ◽  
Cyber Aggression ◽  
Sex With Men ◽  
Sectional Analysis

Abstract Background Homoprejudiced violence, defined as physical, verbal, psychological and cyber aggression against others because of their actual or perceived sexual orientation, is an important public health issue. Most homoprejudiced violence research has been conducted in high-income countries. This study aimed to examine the experience and perpetration of homoprejudiced violence among men who have sex with men (MSM) in Guangzhou, China. Methods MSM in a large Chinese city, Guangzhou, completed an online survey instrument that was distributed through community-based organizations. Descriptive analysis was conducted to describe the sample characteristics. Multivariable logistic regression analyses, controlling for age, residence, occupation, heterosexual marriage, education and income, were carried out to explore associated factors. Results A total of 777 responses were analyzed and most (64.9%) were under the age of 30. Three-hundred-ninety-nine (51.4%) reported experiencing homoprejudiced violence, while 205 (25.9%) reported initiating homoprejudiced violence against others. Compared to respondents who self-identified as gay, respondents who were heterosexual were 0.6 times (AOR=0.6, 95% CI: 0.4-0.9) as likely to have experienced homoprejudiced violence, whereas those who were unsure about their sexual orientation were 2.6 times (AOR=2.6, 95% CI: 1.2-5.5) more likely to have experienced homoprejudiced violence before. Furthermore, a strong association (AOR=2,4. 95% CI: 1.6-3.5) was identified between experiencing homoprejudiced violence and initiating violence. MSM who had disclosed their sexual orientation to people other than their partners were more likely to have experienced homoprejudiced violence (AOR=1.8, 95% CI:1.3-2.5). Conclusions These findings suggest the importance of research and the implementation of interventions focused on preventing and mitigating the effects of homoprejudiced violence affecting MSM in China.

scholarly journals Examining relationships between sleep posture, waking spinal symptoms and quality of sleep: A cross sectional study

PLoS ONE ◽  
2021 ◽  
Vol 16 (11) ◽  
pp. e0260582
Author(s):  
Doug Cary ◽  
Angela Jacques ◽  
Kathy Briffa
Keyword(s):  
Sleep Quality ◽  
Online Survey ◽  
General Information ◽  
Control Group ◽  
Quality Of Sleep ◽  
Cross Sectional ◽  
Obstructive Sleep ◽  
Patient Reported ◽  
Sleep Posture

Introduction Research with a focus on sleep posture has been conducted in association with sleep pathologies such as insomnia and positional obstructive sleep apnoea. Research examining the potential role sleep posture may have on waking spinal symptoms and quality of sleep is however limited. The aims of this research were to compare sleep posture and sleep quality in participants with and without waking spinal symptoms. Methods Fifty-three participants (36 female) were, based on symptoms, allocated to one of three groups; Control (n = 20, 16 female), Cervical (n = 13, 10 female) and Lumbar (n = 20, 10 female). Participants completed an online survey to collect general information and patient reported outcomes and were videoed over two consecutive nights to determine sleep posture using a validated classification system including intermediate sleep postures. Results Participants in the symptomatic groups also reported a lower sleep quality than the Control group. Compared to Control group participants, those in the Cervical group had more frequent posture changes (mean (SD); 18.3(6.5) versus 23.6(6.6)), spent more time in undesirable/provocative sleep postures (median IQR; 83.8(16.4,105.2) versus 185.1(118.0,251.8)) minutes and had more long periods of immobility in a provocative posture, (median IQR: 0.5(0.0,1.5) versus 2.0 (1.5,4.0)). There were no significant differences between the Control and Lumbar groups in the number of posture changes (18.3(6.5) versus 22.9(9.1)) or the time spent in provocative sleep postures (0.5(0.0,1.5) versus 1.5(1.5,3.4)) minutes. Discussion This is the first study using a validated objective measure of sleep posture to compare symptomatic and Control group participants sleeping in their home environment. In general, participants with waking spinal symptoms spent more time in provocative sleep postures, and experienced poorer sleep quality.

INDIVIDUALS’ BEHAVIOR TOWARDS INTERNET AND SOCIAL MEDIA MEDICAL INFORMATION IN DAMMAM AND KHOBAR PRIMARY HEALTH CARE CENTERS

2021 ◽  
pp. 12-16
Author(s):  
Dania Alshiha ◽  
Mashael Alghamdi ◽  
Abeer Aldakhil
Keyword(s):  
Health Care ◽  
Social Media ◽  
Primary Health Care ◽  
Medical Information ◽  
Treatment Plan ◽  
Cross Sectional ◽  
Primary Health ◽  
Primary Health Care Centers ◽  
Health Care Centers ◽  
Internet And Social Media

Nowadays, internet and social media are being used widely. They affect individuals who seek medical information, as a result, inaccurate information lead individuals to misdiagnose themselves and change their treatment plan. The purpose of this study is to determine the behavior of individuals regarding using internet and social media to obtain medical information, sociodemographic factors and reasons for seeking medical information. This study employed a cross-sectional analytical design in primary health care centers in Dammam and Khobar cities. A total of 439 participants were invited to complete a structured, self-administered questionnaire. The results of the study revealed that 87.7% used internet and social media to obtain medical information. The most common reason for searching was symptoms participants had 42.9%. Eighty ve percent were inuenced and 15% were rarely inuenced by the information obtained. More than half of individuals had a positive behavioral change. Majority of individuals had veried the information they obtained, mostly with a physician 83.6%.

A cross-sectional study on global disparities in information experiences of patients with lymphoma/CLL.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e18517-e18517
Author(s):  
Olufunmilayo Bamigbola ◽  
Natalie Dren ◽  
Lorna Warwick
Keyword(s):  
Side Effects ◽  
Medical Information ◽  
Information Source ◽  
Treatment Options ◽  
Information Provision ◽  
Patient Advocacy ◽  
Patient Survey ◽  
Cross Sectional ◽  
Treatment Side Effects ◽  
First Choice

e18517 Background: Patient-centricity remains a cornerstone in the care of patients with lymphoma and CLL, as informed patients are consistently associated with better outcomes and experiences. This study uses the Lymphoma Coalition (LC) 2020 Global Patient Survey (GPS) on Lymphomas and CLL to describe the global differences in the top choices for medical information among patients with lymphoma, as well as differences in their understanding of this information relating to various aspects of their care. Methods: Globally, 9,179 patients from 89 countries took part in the LC 2020 GPS. The countries were grouped into regions, and the regions with greater than 200 patients were included in the analysis (Table). The demographics of the regions were examined, and descriptive analyses of questions relating to information source preferences, information provision at diagnosis (addressing treatment options; process and stages of care; managing treatment side effects), and corresponding levels of patient understanding were performed in IBM SPSS v27. Results: Doctors were the first choice for medical information for patients in each region (SA-82%, AS- 75%, EU-69%, OC-63%, NA-61%). In EU, NA and SA, websites were the most prevalent second and third choice for information (27% and 28%; 30% and 32%; 35% and 27%, respectively). In AS, patient advocacy organisations were the most prevalent second and third choices for information (32% and 40%, respectively), while in OC, the most prevalent second and third choices were nurses (27%) and patient advocacy groups (32%) respectively. Over a fifth of NA patients were not given information on the process and stages of care and how to manage side effects of treatment (21% and 29%, respectively). About a third of patients from SA (32%) reported not getting information on treatment options. Over half of OC patients reported being given information on and completely understanding the different treatment options (51%), processes and stages of care (53%) and how to manage treatment side-effects (58%). Patients from AS were the most prevalent in reporting across the three categories, that they were given information but did not understand it (10%, 7%, 5%, respectively). Conclusions: Globally, patients with lymphoma use various avenues to source the medical information they need, and they differ in their information experiences. Access to appropriate and adequate medical information remains an essential aspect of a successful patient experience and LC advocates that this information be contextual and accessible to all patients with lymphoma. [Table: see text]

scholarly journals Patient-Reported Symptom Severity in a Nationwide Myasthenia Gravis Cohort: Cross-sectional Analysis of the Swedish GEMG Study

Neurology ◽  
2021 ◽  
pp. 10.1212/WNL.0000000000012604
Author(s):  
Malin Petersson ◽  
Amalia Feresiadou ◽  
Daniel Jons ◽  
Andreea Ilinca ◽  
Fredrik Lundin ◽  
...  
Keyword(s):  
Myasthenia Gravis ◽  
Disease Duration ◽  
Late Onset ◽  
Treatment Options ◽  
Diagnostic Delay ◽  
Cross Sectional ◽  
Disease Subtype ◽  
Genes And Environment ◽  
Patient Reported ◽  
Sectional Analysis

Objectives:To describe Myasthenia Gravis-Activities of Daily Living (MG-ADL) in relation to clinical characteristics in a large Swedish nationwide cohort.Methods:In a cross-sectional prevalent cohort study, the Genes and Environment in Myasthenia Gravis study (GEMG), performed November 2018 - August 2019, Myasthenia gravis (MG) patients were invited to submit an extensive 106-item life environment questionnaire, including the MG-ADL score. Patients were classified into early onset MG (EOMG, <50 years), late onset MG (LOMG, ≥50 years) or thymoma-associated MG (TAMG). Comparisons of disease-specific characteristics were made between subgroups, sex and different MG-ADL scores.Results:A total of 1077 patients were included, yielding a 74% response rate: 505 (47%) were classified as EOMG, 520 (48%) LOMG and 45 (4%) TAMG. Mean age at inclusion was 64.3 years (SD 15.7) and mean disease duration was 14.6 years (SD 14.0). Complete MG-ADL scores (n=1035) ranged from 0-18p, where 26% reported a score of 0p. Higher MG-ADL scores were associated with female sex, obesity and diagnostic delay (OR=1.62, 1.72 and 1.69, Padj=0.017, 0.013 and 0.008) and inversely correlated with high educational attainment (OR=0.59, Padj=0.02), but not with age at inclusion, disease subtype nor disease duration. Almost half the population (47%) reported MG-ADL ≥3p, corresponding to an unsatisfactory symptom state.Conclusions:In this nationwide study, comprising more than 40% of the prevalent MG population in Sweden, we observe that almost half of patients report current disease symptoms associated to an unsatisfactory symptom state, indicating the need for improved treatment options.

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