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 ◽  

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.

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. 4095-4095
Author(s):  
Ronit Yarden ◽  
Kim Lynn Newcomer ◽  
Danielle Peterson ◽  

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.


2021 ◽  
Vol 39 (15_suppl) ◽  
pp. 3587-3587
Author(s):  
Laura Diane Porter ◽  
Ronit Yarden ◽  
Kim Lynn Newcomer ◽  
Negeen Fathi ◽  

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.


2006 ◽  
Vol 8 (9) ◽  
pp. 664-671 ◽  
Author(s):  
Juan Ignacio Arraras Urdaniz ◽  
Ruth Vera García ◽  
Maite Martínez Aguillo ◽  
Ana Manterola Burgaleta ◽  
Fernando Arias de la Vega ◽  
...  

2016 ◽  
Vol 65 (2) ◽  
pp. 311-315 ◽  
Author(s):  
Abhishek Bhandari ◽  
Melissa Woodhouse ◽  
Samir Gupta

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.


2021 ◽  
Vol 61 (3) ◽  
pp. 35-39
Author(s):  
K. T. Zhabagin ◽  
A. S. Zhabagina ◽  
A. M. Rakhmankulova

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.


2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Jing Sun ◽  
Xuan Zhou ◽  
Nan Hu

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.


2021 ◽  
pp. neurintsurg-2021-017991
Author(s):  
Milani Deb-Chatterji ◽  
João Pinho ◽  
Fabian Flottmann ◽  
Lukas Meyer ◽  
Gabriel Broocks ◽  
...  

BackgroundInformation is lacking on self-reported health-related quality of life (HRQoL) as a complementary outcome measure in addition to the modified Rankin scale (mRS) in young patients with ischemic stroke after endovascular thrombectomy (EVT) compared with older patients.MethodsData on consecutive patients with stroke who underwent thrombectomy (June 2015–2019) from a multicenter prospective registry (German Stroke Registry) were analyzed. HRQoL was measured by the European QoL-5 dimension questionnaire utility index (EQ-5D-I; higher values indicate better HRQoL) 3 months after stroke in patients aged ≤55 and >55 years. Multivariate regression analyses identified predictors of better HRQoL.ResultsOf 4561 included patients, 526 (11.5%) were ≤55 years old. Young-onset patients had a better outcome assessed by mRS (mRS 0–2: 64.3% vs 31.8%, p<0.001) and EQ-5D-I (mean 0.639 vs 0.342, p<0.001). Young survivors after EVT had fewer complaints in the EQ-5D domains mobility (p<0.001), self-care (p<0.001), usual activities (p<0.001) and pain/discomfort (p=0.008), whereas no difference was observed in anxiety/depression (p=0.819). Adjusted regression analysis for 90-day mRS showed no difference in HRQoL between the two subgroups of patients. Lower age, National Institutes of Health Stroke Scale score and pre-stroke mRS, a higher Alberta Stroke Program Early CT Score, concomitant intravenous thrombolysis therapy and successful recanalization were associated with better HRQoL in both patient subgroups.ConclusionsYoung-onset stroke patients have a better HRQoL after EVT than older patients. Their higher HRQoL is mainly explained by less physical disability assessed by mRS. Depressive symptoms should be actively assessed and targeted in rehabilitation therapies of young-onset stroke patients to improve quality of life after stroke.


ORL ro ◽  
2016 ◽  
Vol 4 (1) ◽  
pp. 40-42
Author(s):  
Alexandra Boloș ◽  
Sebastian Cozma ◽  
Andreea Silvana Szalontay

Tinnitus is a common otologic symptom and probably the most troublesome. Tinnitus causes a number of physical and psychological consequences, that interfere with the quality of life of the patient. Many authors believe that the presence of tinnitus in children is a matter of lesser importance than in adults because it is met less frequently and would be a fleeting symptom, inoffensive for them (Graham, 1981). In addition, the prevalence of tinnitus during adolescence and even in young adults is increasing, possibly as a consequence of the increased ambient noise (Bulbul SF, Shargorodsky J). Various therapeutic approaches have generated different results, which led us to consider the role of psychological factors, hence the need to underline the particularities of this symptom in childhood.  


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