A population-based study of young-onset colorectal cancer patients: Effect of knowledge gaps among patients and providers on stage at diagnosis and quality of life.

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. 4095-4095
Author(s):  
Ronit Yarden ◽  
Kim Lynn Newcomer ◽  
Danielle Peterson ◽  
Keyword(s):  
Quality Of Life ◽  
Colorectal Cancer ◽  
Social Media ◽  
Young Adults ◽  
Online Survey ◽  
Young Patients ◽  
Young Onset ◽  
Number Of Patients ◽  
Incidence And Mortality

4095 Background: Colorectal cancer (CRC) is one of the leading cause of cancer-related death in the US. Despite a decrease in overall incidence and mortality, there has been an alarming increase in CRC diagnosis among young adults (20-49 years old) and causes remain unknown. To explore the unique challenges and unmet needs of the young-adult patients many still establishing their life-long goals, the Colorectal Cancer Alliance launched a comprehensive survey for young-onset CRC patients and survivors via social media to track the self-reported pre-diagnosis awareness, path to diagnosis, and post-diagnosis quality of life experiences of this often overlooked group. Methods: A cross-sectional study, conducted in the form of an online survey, was launched via multiple channels of social media. The questionnaire was based on established instruments including PROMIS, EORTC-QOL-30, and EORTC-CR-29 and EORTC-SHC-22. Results: The survey was completed by 885 patients and survivors. The median age at diagnosis was 42 +/-7, significantly lower than the recommended screening age. Only 6% of respondents were diagnosed with Lynch syndrome although 29% reported some family history. Most respondents (63%) indicated they were not aware that CRC can affect people younger than 50, which may explain why the majority of patients waited more than 3 months and 23% waited over 12 months after noticing their symptoms to visit their doctor. The majority, 75%, of all patients visited 2+ doctors and 11% of those patients visited 10+ doctors before their doctor suspected colorectal cancer. A significant number of patients felt their doctors were dismissive of their symptoms. 77% of patients were diagnosed with advanced disease and were subjected to aggressive therapies that substantially affected their quality of life including neuropathy, anxiety, clinical depression, sexual morbidity, unemployment, and financial toxicity. Many young patients indicated that their doctors did not inform them about fertility preservation. Conclusions: Our survey indicates that medical professionals and young adults need to be aware of the increasing incidence of young-onset CRC, and the importance of timely screening when signs and symptoms are present, regardless of age.

Young-onset colorectal cancer patients disproportionately diagnosed with advanced disease: Patient self-reported journey of symptom duration and misdiagnosis.

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. 3567-3567
Author(s):  
Ronit Yarden ◽  
Kim Lynn Newcomer ◽  
Keyword(s):  
Quality Of Life ◽  
Colorectal Cancer ◽  
Young Adults ◽  
Advanced Disease ◽  
Disease Patient ◽  
Young Patients ◽  
Symptom Duration ◽  
Young Onset ◽  
Incidence And Mortality

3567 Background: Colorectal cancer (CRC) is the second leading cause of cancer-related death among males and females in the US. Despite a decrease in overall incidence and mortality, there has been an alarming increase of CRC diagnosis among young adults (20-49 years old). The Colorectal Cancer Alliance launched a comprehensive survey for young-onset CRC patients and survivors via social media to track the self-reported clinical, psychosocial, financial and quality of life experiences of this often overlooked, group. Methods: The survey was completed by 1195 living patients and survivors. The majority of participants (57%) were diagnosed between the ages of 40 and 49, 33% of patients/survivors were diagnosed between the ages 30-39 and about 10% were diagnosed before the age of 30. Only 8% of the respondents were diagnosed with Lynch syndrome although about 28% reported some family history. Results: Our survey revealed a higher proportion of the young-onset patients and survivors (71%), diagnosed with advanced stage tumors, compared with ACS report for overall CRC patients (60%). The late stage diagnosis subjected young patients to aggressive therapies and a substantial decrease in quality of life including neuropathy, anxiety, clinical depression, and sexual dysfunctions. Most respondents (63%) waited 3-12 months before visiting a doctor, with higher proportion of females waited more than 12 months compared with males (22% vs. 15% p = 0.02). Moreover, even when visited their doctors, most patients indicated that they were initially misdiagnosed. The majority of the respondents (67%) saw at least 2 physicians, and some more than 4 physicians, prior to their diagnosis. Patients that saw 3 or more physicians prior to diagnosis were more likely to be diagnosed with advanced disease. Interestingly, half of the patients that were seen by one physician also claimed they were initially misdiagnosed. Conclusions: Our survey indicates that medical professionals and young adults need to be aware of the increasing incidence of young-onset CRC, and the importance of timely screening when signs and symptoms are present, regardless of age. Yet, 50% of physicians did not explain to the patients’ family members about their elevated risk of the disease and their need for screening.

Therapeutic Affordances of Social Media and Associated Quality of Life Outcomes in Young Adults

2021 ◽  
pp. 089443932110329
Author(s):  
Paul Dodemaide ◽  
Mark Merolli ◽  
Nicole Hill ◽  
Lynette Joubert
Keyword(s):  
Quality Of Life ◽  
Social Media ◽  
Young Adults ◽  
Well Being ◽  
Evidence Base ◽  
Social And Emotional ◽  
Perceived Quality Of Life ◽  
Use Of Social Media ◽  
The Relationship

There is a growing body of literature exploring the general population’s use of social media for assistance in dealing with stigmatized health issues. This study presents novel research examining the relationship between social media use and young adults. It utilizes a therapeutic affordance (TA) framework. Quantitative results from this study are complemented by qualitative data. The relationships between distinct social media and their TA (a–b) are presented to highlight their potential to impact positively on social and emotional well-being outcomes. Evidence includes broad support for “connection,” “narration,” and “collaboration” TAs in this context and the relationship between the use of distinct social media and perceived quality of life (QOL) outcomes (a–c). TA provides an appropriate and valuable theoretical framework which is useful for the development of an evidence-base from the analysis of young adult’s social media usage. An analysis of the association between social media and their QOL outcomes is presented according to the TA relationship pathway (a–c–b). The adoption of a TA framework enables a nuanced analysis of significant associations between specific social media, TA, and improved QOL outcomes. This study demonstrates the significant association between social media and perceived QOL outcomes in young adults.

Young-onset colorectal cancer treatment side effects: Infertility, sexual dysfunction, and quality-of-life outcomes.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. 3587-3587
Author(s):  
Laura Diane Porter ◽  
Ronit Yarden ◽  
Kim Lynn Newcomer ◽  
Negeen Fathi ◽  
Keyword(s):  
Quality Of Life ◽  
Colorectal Cancer ◽  
Side Effects ◽  
Sexual Dysfunction ◽  
Cancer Patients ◽  
Fertility Preservation ◽  
Cancer Treatments ◽  
Young Onset

3587 Background: Colorectal cancer is the third-most commonly diagnosed cancer and the second-leading cause of cancer death in men and women combined in the United States. Young-onset colorectal cancer refers to individuals diagnosed under the age of 50. In recent years, the incidence has increased by 2.2% annually in individuals younger than 50 years and 1% in individuals 50-64, in contrast to a 3.3% decrease in adults 65 years and older. Young-onset (YO) CRC patients and survivors face unique clinical challenges with fertility and sexual dysfunctions, but this risk is not well quantified. There is limited data and public discussion on the long-term effects of colorectal cancer treatments on fertility and sexual dysfunction and the long-term impact on the quality of life. Methods: To explore the unique challenges and unmet needs of the young-adult patient population, a cross-sectional study was conducted. Colorectal cancer patients and survivors (N = 884) diagnosed between the ages of 20 to 50 years old (median age 42 ± 7.0) completed an online questionnaire based on established instruments EORTC-QOL-30, EORTC-CR-29, and EORTC-SHC-22. Results: Thirty-one percent of respondents stated that a medical professional spoke to them about fertility preservation at the time of diagnosis and during treatment. Only 31% were referred to a reproductive endocrinologist, even though 37% of women and 16% of men reported that treatment left them infertile or sterile. Among survey respondents, 12% of women had an egg retrieval procedure, and 36% of men had their sperm preserved prior to the start of treatment. Fifty-three percent of women reported treatment led to premature menopause. Sixty-five percent of respondents suffer from some level of sexual dysfunction due to treatment. In patients who received radiation therapy, women were 12% less likely than men to have discussed sexual side effects with the provider before treatment. Patients who have an ostomy reported more severe sexual dysfunction (17.8%). Rectal cancer patients were 2.5 times more likely than those with colon cancer to report severe dysfunction after their treatment. More than 25% of the respondents said they would have considered alternative treatment if they would have known the risks of sexual dysfunction. Conclusions: Our survey demonstrates inadequate communications between patients and providers about the irreversible fertility and sexual effects of colorectal cancer treatments. Younger patients and survivors face unique long-term challenges and require further information about fertility preservation options and emotional support regarding their sexuality post-treatment. Other studies are needed to assess the physical and psychological side effects endured by young-onset CRC patients and survivors.

scholarly journals Colorectal cancer is a leading cause of cancer incidence and mortality among adults younger than 50 years in the USA: a SEER-based analysis with comparison to other young-onset cancers

2016 ◽  
Vol 65 (2) ◽  
pp. 311-315 ◽  
Author(s):  
Abhishek Bhandari ◽  
Melissa Woodhouse ◽  
Samir Gupta
Keyword(s):  
Colorectal Cancer ◽  
Young Adults ◽  
Cancer Incidence ◽  
Cancer Site ◽  
Cancer Death ◽  
Young Onset ◽  
Incident Cancer ◽  
Incidence And Mortality ◽  
The Usa ◽  
Incident Rates

Colorectal cancer (CRC) incidence and mortality are rising among young adults. Our aim was to contrast the relative incidence and mortality of CRC to other common cancers among young adults in the USA. We used Surveillance, Epidemiology, and End Results registry data to compare cancer site-specific and age-specific mortality and incident rates for adults younger than age 50. We summarized extracted data, both overall, and stratified by sex. We found CRC was the third leading cause of cancer death among adults younger than age 50, after breast and lung cancer (1.67 cases per 100,000). Among young women, CRC was the fourth leading cause of cancer death (1.51 per 100,000). Among young men, CRC was the second leading cause of cancer death (1.82 cases per 100,000). CRC was the second most incident cancer among young adults for men and women combined. Among men, CRC was the second most incident cancer after age 30, with 4.9, 9.0, 16.4, and 30.8 cases per 100,000 for ages 30–34, 35–39, 40–44, and 45–49 years, respectively. Among women, CRC incidence was similar with 4.2, 7.6, 15.3, and 25.9 cases per 100,000 for ages 30–34, 35–39, 40–44, and 45–49 years, respectively. These results show that CRC is a leading cause of cancer incidence and mortality among young adults in the USA, relative to other cancers. Given trends toward increasing rates of CRC among young adults, strategies for identifying individuals at risk for young-onset CRC who might benefit from early age of screening initiation merit investigation.

scholarly journals Indicators of the quality of life of patients with colorectal cancer: A literary review

2021 ◽  
Vol 61 (3) ◽  
pp. 35-39
Author(s):  
K. T. Zhabagin ◽  
A. S. Zhabagina ◽  
A. M. Rakhmankulova
Keyword(s):  
Quality Of Life ◽  
Colorectal Cancer ◽  
Cancer Case ◽  
Clinical Aspects ◽  
Physically Active ◽  
Factors Affecting ◽  
Incidence And Mortality ◽  
The Republic ◽  
Eortc Qlq

Relevance: GLOBOCAN estimates 1.9 million new cases of colorectal cancer (CRC) and 935,000 deaths from CRC in 2020. CRC accounts for every tenth cancer case or dying from cancer. According to the Oncological Service of the Republic of Kazakhstan (RK), in 2019, CRC ranked 5th in incidence and mortality among all cancers. With a survival time of more than five years, one of the main criteria that determine the condition of patients and the effectiveness of treatment is their quality of life (QOL). Understanding QOL parameters is essential to assess the full impact of the disease on an individual, family, and community. The purpose of the study was to analyze the quality-of-life indicators in patients with colorectal cancer and validate a Kazakh variant of the EORTC QLQ-CR-2 questionnaire in RK. Results: The QOL of patients with CRC globally is relatively low in its physical, mental, social, and clinical aspects. The most important factors affecting the QOL are sexual dysfunction, body dissatisfaction in ostomy patients, chronic recurrent diarrhea, symptoms of distress, and high fatigue. The patient’s lifestyle, age, gender, stage of the disease, and psycho-emotional status all affect the QOL of patients with CRC. It should also be noted that CRC survivors who have been physically active report a better QOL than those who were not physically active. Conclusion: The fact that no study has been conducted in the RK for the QOL of patients with CRC necessitates a survey to understand the QOL parameters in patients with CRC using the Kazakh version of the EORTC QLQ-CR-2 questionnaire. We plan to conduct such a study in the near future within the framework of grant funding for young scientists IRN AP09058432 KN MES RK and publish the results.

scholarly journals Factor VIII replacement prophylaxis in patients with hemophilia A transitioning to adults: a systematic literature review

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Jing Sun ◽  
Xuan Zhou ◽  
Nan Hu
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Young Adults ◽  
Literature Review ◽  
Systematic Literature Review ◽  
Prophylactic Treatment ◽  
Standard Dose ◽  
Young Patients

Abstract Background Despite the advantages of prophylactic treatment for hemophilia, patients tend to discontinue or not adhere to it because of several challenges such as long-term use, high cost, young patients transitioning to adolescents, and switch to self-infusion or self-care. The goal of this systematic literature review is to emphasize adherence to and efficiency of prophylactic treatment in adults. Methods A literature review was conducted in PubMed, Embase, and Cochrane databases until April 2021 according to PRISMA guidelines, and the protocol was registered with PROSPERO (CRD42020220085). Studies evaluating the efficacy of prophylaxis in enhancing the quality of life were included. Results A total of 31 articles involving 2379 patients with hemophilia were included in this systematic review. Of these, 26 studies were observational, questionnaire-based studies, and 5 were randomized controlled trials. The majority of studies reported lower annualized bleeding rates in patients receiving prophylaxis compared with those receiving on-demand treatment or those who discontinued prophylaxis. Standard-dose prophylaxis was reported to be effective in most of the studies. In developing countries like China, data suggest that low doses were administered because of limited available resources. However, standard dose or individualized prophylaxis should be provided to prevent joint damage in the long term. Compared with adults, greater adherence to treatment was observed in patients aged < 16 years. Conclusion This systematic review emphasizes the importance of adherence to prophylaxis among young adults transitioning from childhood. In countries like China, low-dose prophylaxis can help in preventing joint bleeds in the short term, but in the long term, standard-dose therapy has shown high adherence among young adults and better joint health, in turn improving the quality of life.

Health-related quality of life and time from diagnosis among young adult colorectal cancer survivors.

2021 ◽  
Vol 39 (3_suppl) ◽  
pp. 34-34
Author(s):  
Kimberly Ann Miller ◽  
Julia Stal ◽  
Phuong Gallagher ◽  
Jonathan N Kaslander ◽  
David R. Freyer ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Colorectal Cancer ◽  
Online Survey ◽  
Well Being ◽  
Health Related Quality ◽  
Cross Sectional ◽  
Targeted Interventions ◽  
Related Quality ◽  
Health Related

34 Background: Incidence of colorectal cancer (CRC) in patients under 50 years of age is rising. Quality of life in survivorship is not well-described in this population. We compared health-related quality of life (HRQoL) in CRC survivors ≤ 50 years old who were 6-18 months or 19-36 months from initial diagnosis or relapse. Methods: A cross-sectional online survey was administered in collaboration with a national organization for young CRC survivors. The Functional Assessment of Cancer Therapy (FACT-C) was used to measure HRQoL, which assesses HRQoL globally, including a CRC specific scale, and emotional, physical, social, and functional well-being domains. T-tests were conducted to compare HRQoL between survivors who were 6-18 months versus 19-36 months from diagnosis/relapse. Results: This sample (n=308) had a mean age of 33.76 SD±6.68; 201 (65.3%) were male; tumor location was colon or rectal in 41.7% and 58.3%, respectively. The majority (55.23%) were diagnosed with stage 2 disease; 98.0% were non-metastatic. 42.2% experienced relapse; 25% had an ostomy. Most survivors were 6-18 months (N=189; 61.4%) from diagnosis/relapse, and key demographics and disease characteristics did not significantly differ between those who were shorter versus longer time from diagnosis/relapse. The mean global HRQoL score was 67.3 out of a possible score of 136. Across domains, scores were low, with social well-being the highest (15.15/28) and emotional well-being the lowest (11.44/24). Social well-being was significantly higher among survivors who were 6-18 months from diagnosis/relapse compared to those 19-36 months (15.98 for 6-18 months vs. 13.83 for 19-36; p<0.01), as was functional well-being (13.20 for 6-18 months vs. 11.12 for 19-36; p<0.01). Emotional well-being and physical well-being did not significantly differ between groups. Conclusions: Overall HRQoL scores were low among younger CRC survivors, and social and functional well-being were significantly worse for those longer from diagnosis. Appropriate counseling and other targeted interventions are necessary to maintain HRQoL over time in this at-risk population. [Table: see text]

scholarly journals Is PFS the Right Endpoint to Assess Outcome of Maintenance Studies in Multiple Myeloma? Results of a Patient Survey Highlight Quality-of-Life As an Equally Important Outcome Measure

Blood ◽  
2021 ◽  
Vol 138 (Supplement 1) ◽  
pp. 836-836
Author(s):  
Anna Fleischer ◽  
Larissa Heimeshoff ◽  
Johannes Allgaier ◽  
Karin Jordan ◽  
Götz Gelbrich ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Myeloma ◽  
Maintenance Therapy ◽  
Online Survey ◽  
Previous Treatment ◽  
Patient Survey ◽  
Study Endpoint ◽  
Number Of Patients ◽  
Increased Risk

Abstract Background: So far, planning of clinical trials in multiple myeloma (MM) has been based on traditional outcome measures such as progression free (PFS) and overall survival (OS). However, treatment with drugs, which prolong survival, usually impacts quality of life (QoL). A good example is lenalidomide (LEN) maintenance therapy in transplant eligible newly diagnosed MM. While LEN is the only approved drug for maintenance therapy, clearly and consistently prolonging PFS in a number of trials, treatment comes with an increased risk for infections, secondary malignancies, fatigue and diarrhea. One consequence could be to define QoL as an additional study endpoint but the MM patient's perspective on this topic has not been systematically investigated yet. Methods: To address this, we performed an online survey with MM patients with previous lenalidomide (LEN) maintenance. The survey contained a total of 205 questions, including the validated QoL C30- and My20-questionnary and questions pertaining the patient's preference for either prolonged survival or increased QoL. To assess differences between patient subgroups we used statistical analyses such as a random decision forest. Results: 210 patients with MM completed the online survey within 48 days. 92 (47%) of patients chose a shortened time of PFS in favor of an increased QoL (QoL-group). An almost equal number of patients 81 (42 %) chose the exact opposite option (PFS-group). 11% of patients were unable to make this kind of decision. Thus, a sole measurement of the endpoint PFS would disregard the preference of ~1/2 of the patients. We used an unbiased artificial intelligence supported statistical approach to explore additional features of the QoL- and the PFS-group. Interestingly, the top variable associated with the QoL-group was pain related to bone disease at the time of diagnosis (P = 0.01). There was a trend for more advanced treatment lines in patients in the QoL-group compared to the PFS-group. Patients who preferred PFS were found to be more likely to hand over responsibility to their physicians. Conclusion: We demonstrate that MM patients can be divided into two nearly equally sized groups, where one group favors PFS and the other one prefers QoL, with bone pain at diagnosis and the number of previous treatment lines impacting the decision. Since our results suggest that survival as the only endpoint for maintenance therapy studies in MM should be reconsidered, we propose PFS and QoL measures as co-primary endpoints to account for the heterogeneity in patients´ preferences and to collect the information necessary for shared decision-making in future patients. Figure 1 Figure 1. Disclosures Einsele: Janssen, Celgene/BMS, Amgen, GSK, Sanofi: Consultancy, Honoraria, Research Funding. Weinhold: Sanofi: Honoraria.

scholarly journals Time from Diagnosis and Correlates of Health-Related Quality of Life among Young Adult Colorectal Cancer Survivors

Cancers ◽  
2021 ◽  
Vol 13 (16) ◽  
pp. 4045
Author(s):  
Kimberly A. Miller ◽  
Julia Stal ◽  
Phuong Gallagher ◽  
Zhen Weng ◽  
David R. Freyer ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Colorectal Cancer ◽  
Young Adult ◽  
Online Survey ◽  
Well Being ◽  
Disease Stage ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

The incidence of colorectal cancer (CRC) is rising among young adults. Health-related quality of life (HRQoL) in survivorship is not well-described in this population. We assessed HRQoL among young adult CRC survivors diagnosed from age 18–39 (AYAs) to examine differences by time from diagnosis, and to identify key correlates. A cross-sectional online survey was administered in collaboration with a national patient advocacy organization. The Functional Assessment of Cancer Therapy (FACT-C) was used to measure HRQoL, which assesses HRQoL globally and across 4 domains: emotional, physical, social, and functional. T-tests were conducted to compare HRQoL between survivors who were 6–18 months versus 19–36 months from diagnosis or relapse and multiple linear regression was conducted to identify correlates. The sample (n = 196) had a mean age of 32.2(SD ± 4.5); 116 (59.9%) were male; and the self-reported tumor location was colon (39.3%) or rectal (60.7%). The majority (56.4%) were diagnosed with stage 2 disease; 96.9% were non-metastatic. The mean global HRQoL score was 67.7 out of a possible score of 136. Across domains, mean scores were low. Emotional and physical well-being were significantly higher among survivors who were 19–36 months from diagnosis/relapse compared to those 6–18 months from diagnosis/relapse. Longer time from diagnosis and older current age were associated with higher HRQoL, while more intensive treatment and higher clinical disease stage were negatively associated, particularly in the emotional and physical domains. Overall, HRQoL was low in this population, and further research is needed to inform age-appropriate interventions to improve HRQoL for AYA CRC survivors.

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