Young patients and gastrointestinal (GI) tract malignancies - are we addressing the unmet needs?

This study assessed the reports and perceptions of YA with GI cancer regarding changes in their physical and psychosocial symptoms over time, as well as evaluating the emotional and practical needs during treatment and throughout early survivorship.

The results indicate that following treatment young GI cancer patients experience symptoms that significantly worsen their QOL and interfere with daily activities as diarrhea, sleeping disorder and sexual dysfunction. In the psychosocial function domain, patients reported significant impairment in occupational activities and coping with children.

The psychosocial aspects young adult cancer patients experience are gaining increased focus in recent studies [25‐28], including consequences for QOL indicators (e.g., interpersonal relationships with spouse/family, coping with young children, relative disability to conduct daily activities, fertility issues) [29]. Our study indicates that young adults with GI cancers experience cancer- and treatment-related symptoms in a pattern that resembles the impact of cancer on AYA patients as appear in former studies [26], which showed that having unmet service needs was strongly associated with lower health related quality of life. In former studies, a large proportion of AYAs pointed at an unmet need for counseling mainly for physical exercise and nutrition, thereby reflecting a gap in obtaining supporting services. Recent study sought to explore the needs and preferences of colorectal cancer survivors (in all ages), and found that the respondents to the study survey reported receiving more medical information about their cancer or its follow-up than about nonmedical issues, such as support groups, counseling, and financial and insurance issues. The authors concluded that the lack of communication regarding nonmedical issues highlights the need for multidisciplinary support for colorectal cancer survivors [30]. In a study that compared the symptom burden of young patients with breast or colorectal cancer compared with older counterparts, the young patients experienced a worse symptom burden, especially in colorectal patients [6].

Our patients reported significant unmet needs for nutritional counseling and psychosocial support mainly among women. Other needs as occupational counseling, spiritual support, financial counseling and palliative support were documented as well yet, not in a specific gender. Patients who were treated with multimodality treatment (surgery, chemotherapy and radiation) presented higher rates of unmet needs. We found no differences in unmet needs between metastatic setting and adjuvant setting, or between younger ages (<35 years at diagnosis). Female patients depicted a trend towards higher rate of unmet needs. We used the CARES- SF score, an instrumental for assessing the unmet needs of patients with cancer in a standardized method providing a normative to specific cohorts of cancer patients [20, 22] suited for patients anywhere along the cancer continuum that was shown to be especially useful for evaluating the rehabilitation needs of survivors of cancer. The CARES score enabled us to compare our cohort to breast cancer patients and general non-breast cancer female patient population (for the female patients) and prostate cancer and general non-prostate cancer male patient population (for male patients): At baseline both female and male GI patients had no symptomatic sexual symptoms. During the treatment, the degree of sexual dysfunction experienced by the patients resembled high percentile of breast cancer patients (equivalent to 87^th percentile) and of general female patient population (84^th percentile). As for the male GI patients – compared with prostate cancer patients the degree of sexual dysfunction was averaged (59^th percentile), but markedly high compared with general male patient population (83th percentile). We acknowledge that these scales are not established specifically for young patients, but have been adopted in other studies of characterizing young-onset population [31], and moreover, that younger population may have a better starting point that older patients with regard to sexual function, mainly due to lack of menopausal symptoms that may exacerbate sexual dysfunction. Sexual dysfunction in young breast cancer patients has been formerly documented [31] and correlated to treatment-related amenorrhea. In our cohort, the majority of patients remained menstruating throughout treatment or resumed menses shortly after treatment cessation (for colon cancer patients). Two rectal cancer patients had amenorrhea following chemoradiation. According to free text answers the patients provided regarding sexual function – there was loss of interest mainly due to diarrhea, abdominal pain and increased peristalsis, and general transient “loss of body image”. For patients who were treated with chemoradiation, following radiation sexual dysfunction CARES scores were higher than the colon cancer or gastric cancer patients (data not shown). Our study highlights the need for potential intervention regarding vaginal dilators for rectal cancer patients, and psychological counseling for others. For patients that experience menopausal symptoms during treatment-induced amenorrhea, early intervention with topical estrogenic creams may be useful to alleviate vaginal atrophy and discomfort. A recent study evaluated the relations between body image and sexual function in a cohort of female patients with rectal and anal cancer. The median age of the participants was 55 years. About half of the cohort endorsed two or more body image problems, and 28 % described feeling quite a bit or very much concerned about at least one problem. Younger age, lower global health status, and worse gastrointestinal tract symptoms, in particular, were related to poorer body image [17]. An interesting observation reflected from our study is that despite the significant deterioration in sexual dysfunction, it does not translated into interrupted interaction with the spouse, whose score remains relatively stable throughout the time-points.

A major issue that was reflected as a substantial unmet need was nutritional counseling, as reported by 70 % of the participants. Suboptimal absorption and lack of adequate nutrition in patients treated for colorectal cancer as well gastric cancer have been documented in several studies. Former evidence indicate that early individualized nutritional counseling and education of cancer patients treated with radiotherapy is highly effective [32]. Nutritional factors are implicated in the different milieu of anti-cancer therapies (surgery, chemotherapy, radiotherapy and multi-modality treatments), as well as tumor-related consequences and psychosocial factors as depression and anxiety [33‐35]. Unintentional weight loss and malnutrition may occur in 30 to 80 % of cancer patients, while patients with GI cancers are considered highly prone to develop these symptoms. Recently Platek et al [36] conducted a cross-sectional Study that aimed to determine the prevalence and types of outpatient clinical nutrition services available at comprehensive cancer centers (CCCs). The authors concluded that CCCs rely on referral-based clinical nutrition service, which are not consistently a part of multidisciplinary care, and that an in-depth comparison of clinical nutrition services among other approaches to cancer care, including a comparison of clinical outcomes among these different approaches, is needed.

Our study carries several limitations. Patients were enrolled to the study following the cessation of treatment, acknowledged as “cancer survivors”, and hence baseline values may be subjected to recall bias. Furthermore, the sample is comparatively small and heterogeneous (several tumor types) mainly due to the relatively low prevalence of GI cancers in young adults who are less than 40 years that were accessible for enrollment at the time of the study. Nonetheless, the results show clear trend of specific symptoms and unmet needs that hamper the QOL of these young adults and warrant consideration of the medical-psychosocial aspects. The purpose of the study had been to pave the ground for a large prospective study which is ongoing in our center, in which all newly diagnosed young patients with GI cancers are enrolled and assessment is performed longitudinally, in a timely fashioned. Future prospective large scale studies are required to delineate the magnitude of unmet needs as well as physical and psychosocial symptoms in a prospective fashion, to better tailor suitable interventions, and to further compare young patients with GI cancer to other young-onset cancer patient cohorts.