A Coordinated Clinical Center for Young Onset Colorectal Cancer

Mendelsohn, Robin B.; Palmaira, Randze Lerie D.; Lumish, Melissa; Bacani, Joseph; Krishnan, Asha; Weiss, Jill A.; Semler, Rosemary; Casson, Anne; Arkema, Ashley; Carter, Jeanne; Nelson, Christian J.; Mulhall, JP; García-Aguilar, Julio; Stadler, Zsofia K.; Maya, Hadley; Cercek, Andrea

doi:10.1002/onco.13849

Cited by 10 publications

(11 citation statements)

References 29 publications

(29 reference statements)

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“…Over the past 20 years, however, the incidence in patients younger than 50 years denoted that early-onset colorectal cancer (EO-CRC) has been continually increasing. 2 A cause for this epidemiological shift is yet to be established but is paired with simultaneous worldwide observation of increased mortality for this growing subgroup, 3 although overall mortality for CRC is decreasing.…”

Section: To the Editormentioning

confidence: 99%

Insights From the IDEA Collaboration: Are They Enough?

Smith

Geerinckx

Price

2022

JCO

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Section: To the Editormentioning

confidence: 99%

Insights From the IDEA Collaboration: Are They Enough?

Smith

Geerinckx

Price

2022

JCO

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“…10 EOCRC patients differ from older people with CRC in their diagnostic trajectories 11 ; time to diagnosis can be 60% longer for younger patients [11][12][13] with a greater number of missed diagnostic opportunities, 11 14 and younger people are more likely to be diagnosed in later stages of the disease. 11 12 15 Late stage diagnosis increases the likelihood of aggressive treatment 16 17 with physical, psychosocial and quality of life outcomes that are uniquely challenging for this under-50 patient population, 18 especially with regards to fertility and ostomy management. 15 17 Despite the rising incidence of the disease, health systems are only just becoming aware of EOCRC.…”

Section: Open Accessmentioning

confidence: 99%

“… 15 17 Despite the rising incidence of the disease, health systems are only just becoming aware of EOCRC. 18 19 In the US, for example, the American Cancer Society has lowered its recommended regular CRC screening age from 50 years and over to 45 years and over for average-risk patients 20 ; other western countries have yet to revise the guidance on screening age.…”

Section: Introductionmentioning

confidence: 99%

Things I need you to know: a qualitative analysis of advice-giving statements in early-onset colorectal cancer patients’ personal accounts published online

Lamprell

Pulido²,

Arnolda³

et al. 2023

BMJ Open

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ObjectivePeople with early-onset colorectal cancer (EOCRC), defined as colorectal cancer (CRC) before the age of 50, now constitute a significant patient population. In empirical and grey literature EOCRC patients report unsatisfactory experiences of care, especially in relation to protracted intervals from first help-seeking to diagnosis. This study is the first to investigate EOCRC patients’ perspectives on ways to improve experiences of care. The objective is to provide foundational knowledge for the development of EOCRC-specific patient-reported experience measures (PREMs).DesignThe study was designed as qualitative Internet Mediated Research, involving a thematic analysis of unsolicited narratives recounting personal experiences of EOCRC care. We examined advice-giving statements in 120 online texts written by EOCRC patients and survivors.SettingThe Internet is the broad research setting. The host websites of three prominent charitable CRC support organisations were selected as specific research sites: Bowel Cancer Australia, Bowel Cancer UK and Bowel Cancer New Zealand.ResultsWe found that 90% of texts comprised statements of advice to new patients about the importance of self-advocacy in achieving quality care. Four key contexts for self-advocacy were identified: (1) accessing relevant diagnostic services; (2) driving diagnostic investigations when symptoms are not resolved; (3) involvement in treatment decision-making and (4) proactivity about preferred outcomes. Over 30% of advice-giving texts also directed statements of advice to healthcare providers, indicating that their youthfulness had been a barrier to timely diagnosis.ConclusionHealthcare barriers to, and facilitators of, patient self-advocacy may be indicators of quality EORC care. There is a need for greater awareness of the impact of age bias on the responsiveness of clinicians and healthcare services in EOCRC care. Our findings support the development of EOCRC-specific PREMs that can guide age-appropriate policy and practice for this newly identified patient population.

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“…An emerging model to address the needs of patients with EO-GI cancers is the establishment of a dedicated center focusing on ancillary services including social work, fertility, sexual health, and nutrition. 100 The Center for Young Onset Colorectal and Gastrointestinal Cancers at the Memorial Sloan Kettering Cancer Center is the first of its kind worldwide and was established in 2018, on the basis of needs identified from patient and caregiver survey data from the Colorectal Cancer Alliance 103 with two primary goals: (1) to meet the unique clinical needs of patients diagnosed with GI cancers before age 50 years and (2) to create the necessary infrastructure to study the etiology and distinct features of EO disease. 100 The clinical infrastructure consists of a multidisciplinary support service, which includes a dedicated social worker who provides early psychosocial resources; integrated GI oncology, radiation oncology, and surgical consultation; sexual health and fertility; and genetic counseling.…”

Section: Specialized Support Servicesmentioning

confidence: 99%

Practical Considerations in Diagnosing and Managing Early-Onset GI Cancers

Lumish

Cercek

2022

JCO

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The incidence of early-onset (EO) GI cancers occurring in individuals younger than age 50 years has been rising at an alarming rate over the past two decades. Although this rise in incidence among young patients correlates with increased rates of obesity, changes in diet, and alterations in the environment, the effects of these environmental factors on carcinogenesis, metastasis, and treatment response are unknown. Although several unique clinical trends exist among EO-GI cancers and their average-onset GI cancer counterparts, GI cancers are molecularly indistinct between younger and older patients, and no data support distinct treatment paradigms for patients with EO disease. The majority of EO-GI cancers are not explained by germline changes. There remains a critical need for further research to understand the pathogenesis and optimal management of EO-GI cancers. In addition, current screening strategies are not adequate to identify EO-GI cancers, and early biomarkers are needed. Specialized centers, with a focus on psychosocial aspects of cancer management, can address the unique care needs of patients with EO-GI cancers.

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A Coordinated Clinical Center for Young Onset Colorectal Cancer

Cited by 10 publications

References 29 publications

Insights From the IDEA Collaboration: Are They Enough?

Insights From the IDEA Collaboration: Are They Enough?

Things I need you to know: a qualitative analysis of advice-giving statements in early-onset colorectal cancer patients’ personal accounts published online

Practical Considerations in Diagnosing and Managing Early-Onset GI Cancers

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