Palliative Care for Young Adults Is a Growing Reality in CRC


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Although most younger patients received diagnoses of cancer of the rectum or distal colon, incidence rates are increasing across all colorectal anatomic subsites.

Rajiv Agarwal, MD

Young adults represent an expanding and vulnerable subset of patients with colorectal cancer (CRC). It is estimated that in 2020, those less than 50 years old will make up 12% of newly diagnosed cases and 7% of CRC-related deaths in the United States.1

Although most younger patients received diagnoses of cancer of the rectum or distal colon, incidence rates are increasing across all CRC anatomic subsites. In addition, over a 10-year period (2007-2016), the number of advanced-staged diagnoses in young adults in the United States grew 2.7% annually for regional disease and 2.5% for distant disease.1,2 Compared with those aged 50 to 64 years and 65 years or older, patients in the young adult age group have a greater percentage of de novo metastatic disease. This rising incidence of early-onset advanced CRC is unfortunately, yet expectedly, mirrored by an upward trend in the young adult CRC mortality rate.1 These findings are not unique to the United States; the incidence of CRC among young adults has concurrently increased in several other high-income countries,3 suggesting a global epidemiological shift.

As a younger population of patients with CRC becomes a growing reality, it is essential to study and identify potential differences in underlying tumor biology, molecular profiling, disease characteristics, clinical presentation, and treatment response.4-6 It is equally critical to address the unmet psychosocial, developmental, informational, and palliative care needs of these patients.7,8 Caring for younger patients with advanced CRC is challenging for oncologists, palliative care specialists, nursing professionals, pharmacists, social workers, and family caregivers partly because CRC, which historically affected an older population, can manifest earlier than expected and at advanced stages, even without hereditary warning. After decades of steadily growing incidence among young adults, a disease that was once unexpected has become more probable, and what was once rare is now more common.

Cathy Eng, MD

Fulfilling a Need for Young Adult Patients

Palliative and supportive care in oncology can help people of all ages live and cope with cancer and ensure that health care–related decisions align with personal values and goals. Specifically, palliative care can mitigate symptom burden, improve quality of life, and even extend survival; however, these benefits were originally demonstrated in older patients.9-11 Prior palliative care research in the adolescent and young adult (AYA) cancer population (aged 15-39 years) has shown that younger patients not only face the gravity of their illness and disease-related implications but also must contend with their own psychosocial development and existential maturity relative to their healthy peers.12-15

Young adults vary in their independence and autonomy, relationships with others and society, and concept of identity and formulation of values, all of which are dependent on precancer life experiences and may drastically change upon receiving a cancer diagnosis. In addition, younger patients may fear and worry about an unlived future or uncompleted life and the effect of their death on loved ones. As a result, these patients require proactive attention and resources for psychosocial distress, spirituality and existential concerns, physical and mental wellness, fertility and sexuality, genetic counseling, financial guidance, and support for academic and/or professional ambitions. Cancer treatment planning for young adults should therefore promote the achievement of personal, developmental, and major life milestones whenever possible.12-17

Recent studies have focused on characterizing the priorities and experiences of young adults with advanced-stage cancer, including assessment of prognostic and end-of-life communication needs. Themes from a qualitative analysis of AYA patients with metastatic cancer show that young adults may seek aggressive cancer treatment, but also endorse a lack of prognostic clarity and want more support to accept their mortality.18 Prognostic communication can be difficult for any patient facing a serious illness, but perhaps more so when disease presents earlier than expected, such as in the case of young adult CRC. Ongoing conceptual and practical models are being developed to enhance serious illness communication for young adults. Conversations about prognosis should start at the time of diagnosis and be conducted in iterative fashion, personalized for each individual’s cancer type, information preferences, and developmental context.19,20

Despite recognition of the importance of prognostic discussions for AYAs, palliative care consultations and hospice care referrals occur late, if at all.21-23 Such utilization patterns may be partly explained by health care providers in oncology, who report that introducing and providing palliative care for younger adults is more challenging than doing so for older adults. Oncology providers may feel more tragedy, emotional closeness and empathy, and uncertainty in how to engage with a young patient’s family.24 Even when oncol-ogists and palliative care specialists know from experience what to say or how to approach prognostic discussions for cancers that typically affect specific age groups, when disease shifts earlier, it creates a unique set of communication issues that cannot be overlooked.

Data for CRC-specific patient-reported outcomes in the young adult population are limited. Larger studies that have measured quality of life in AYAs have minimal to no representation of young-onset CRC.25,26 Two analyses have examined treatment-decision making patterns, related worries, and infor-mation-seeking behavior in young adult patients with CRC (Figure).27,28 In 148 patients aged 21 to 40 years in which 80% had CRC, decision-making preferences were similar to those of middle-aged patients (age 41-60 years), but younger adults had signifi-cantly more concern for spending time away from family.27 In a large international survey comparing 455 patients with young-onset CRC to 670 with average-onset CRC, both groups sought health information with simi-lar frequency; however, younger patients significantly differed by using the internet as a first source and downloading smart-phone cancer and wellness apps for personal support.28 Unlike other AYA cancers such as hematologic malignancies, sarcomas, germ-cell tumors, and breast cancer, young adult CRC is still a relatively novel and growing disease entity, presenting unique psychosocial, communication, and practical challenges for oncologists and patients.

Figure. Decision-Making Influences Regarding Cancer Treatment27

Patients with young-onset CRC deserve our attention to optimize their health and wellbeing in the context of their lives and personal development. Age-appropriate and tailored palliative care interventions are needed to support this emerging patient demographic.


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