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Cancer cachexia and low energy intake (EI) probably contribute to weight loss in advanced pancreatic cancer (PC). However, little is known about the actual EI in this disease. Aims were to assess EI, weight loss and symptoms during the disease course and investigate associations between symptoms and EI. Thirty-nine patients (21 males) with advanced PC were consecutively included and followed every 4 weeks until the end of life. A 24-h dietary recall was used to assess EI. The Edmonton Symptom Assessment System (ESAS) and the PC-specific health-related quality of life questionnaire (QLQ-PAN26) were used for symptom assessment. Median age was 62 years (48–88), WHO performance status 1 (0–2) and survival 5 months (1–25). Seventeen (44 %) patients had unresectable cancer, 16 (41 %) metastatic and six (15 %) recurrent disease. Upon inclusion, 37 (95 %) reported weight loss (median 4.0 kg per month). During follow-up, median weight loss per month was <1.0 kg. Forty to 65 % had EI <29 kcal/kg/day (cut-off value for weight maintenance) during the observation period but they did not lose more weight than patients with EI ≥ 29 kcal. Strong negative correlations (r range) were found between EI and pain (0.51–0.61), fatigue (0.54–0.67), oral dryness (0.61–0.64) and loss of appetite (0.53–0.71). In this study, several symptoms influenced EI negatively. Low EI did not completely explain weight loss in this patient group, but careful monitoring and early follow-up of symptoms may be important interventions to reduce weight loss in advanced PC.

Distance from residence to hospital has been associated with clinical outcomes for colorectal cancer patients. However, little is known about the association of remoteness with quality of life (QoL) for colorectal cancer survivors. We examined the relationship between distance from hospital and colorectal cancer survivors’ QoL, with a specific focus on gender. Colorectal cancer survivors in Ireland who were more than 6-months postdiagnosis completed the European Organization for Research and Treatment of Cancer QLQ-C30, measuring global health status (GHS) and physical, role, cognitive, social, and emotional functioning. Bootstrap linear regression was used to evaluate the association between remoteness and QoL scales, controlling for demographic and clinical variables. Separate models were generated for the full sample, for women, and for men. The final analytical sample was 496 colorectal cancer survivors; 186 women and 310 men. Living remote from the treating hospital was associated with lower physical functioning (coefficient −4.38 [95 % confidence interval −8.13, −0.91]) and role functioning (coeff. −7.78 [−12.64, −2.66]) among all colorectal cancer survivors. In the separate gender models, remoteness was significantly associated with lower physical (coeff. −7.00 [−13.47, −1.49]) and role functioning (coeff. −11.50 [−19.66, −2.65]) for women, but not for men. Remoteness had a significant negative relationship to GHS (coeff. −4.31 [−8.46, −0.27]) for men. Aspects of QoL are lower among colorectal cancer survivors who live far from their treating hospital. There are gender differences in how remoteness is related to QoL domains. The results of this study suggest that policy makers, service providers, and health care professionals should consider the specific QoL needs of remote colorectal cancer survivors, and be attuned to and prepared to address the differing needs of men and women.

A proportion of people with palliative care needs unknowingly have a genetic predisposition to their disease, placing relatives at increased risk. As end-of-life nears, the opportunity to address genetics for the benefit of their family narrows. Clinicians face numerous barriers addressing genetic issues, but there is limited evidence from the palliative care clinician perspective. Our aims are to (1) explore the views and experiences of palliative care clinicians in addressing genetics with patients and their families and (2) generate suggested strategies that support integration of genetics into palliative care. An interpretive descriptive qualitative study using semi-structured interviews with palliative care doctors and nurses (N = 14). Three themes were identified: (1) Harms and benefits of raising genetics: a delicate balancing act, (2) Navigating genetic responsibility within the scope of palliative care and (3) Overcoming practice barriers: a multipronged approach. Participants described balancing the benefits of addressing genetics in palliative care against potential harms. Responsibility to address genetic issues depends on perceptions of relevance and the scope of palliative care. Suggestions to overcome practice barriers included building genetic-palliative care relationships and multi-layered genetics education, developing clinical resources and increasing organisational support. Integrating aspects of genetics is feasible, but must be balanced against potential harms and benefits. Palliative care clinicians were uncertain about their responsibility to navigate these complex issues to address genetics. There are opportunities to overcome barriers and tailor support to ensure people nearing end-of-life have a chance to address genetic issues for the benefit of their families.

Stomatitis, including oral mucositis and ulcerations induced by HSV-reactivation are major sources of morbidity after high-dose (HD) chemotherapy and subsequent autologous hematopoietic stem cell transplantation (SCT). While increased synthesis of pro-inflammatory cytokines, such as interleukin-1 (IL-1) and tumor necrosis factor alpha (TNF-α)—as well as reactivation of viral infections have frequently been observed in this setting, data on their association with the severity of mucositis is limited. Fifteen patients with Hodgkin's or non–Hodgkin's lymphoma receiving HD conditioning chemotherapy and autologous SCT were assessed with respect to oral pain and severity of stomatitis on day –6, 0, +5 to +7, +13 to +15, and +100. On the same dates, IL-1 and TNF-α were quantified in saliva and screening for a wide range of viral pathogens was carried out by cell culture and PCR and complemented by serological analyses. t Tests were used to assess potential associations between these variables. All but one patient had a positive HSV IgG titer at baseline. Reactivation as confirmed by HSV PCR was observed in seven patients (50%). There was a significant association between the presence of HSV in saliva samples and severity of stomatitis (t test, p = 0.015). The highest concentration of TNF-α and IL-1 coincided with the maximum intensity of stomatitis, but the association was not significant. We found a significant association between the presence of HSV in saliva samples and severity of stomatitis in patients receiving HD chemotherapy and subsequent autologous SCT. While acyclovir prophylaxis has become standard for patients undergoing allogeneic SCT, this issue has not been sufficiently explored for other chemotherapy regimens. Based on our findings, conduction of a well-powered controlled randomized trial may be warranted.

Obesity is prevalent in gynecological cancer survivors and is associated with impaired health outcomes. Concerns due to cancer and its treatment may impact changes in lifestyle after cancer. This study aimed to assess the association between cancer-related psychosocial factors and changes in physical activity and diet, 18 months after initial treatment among gynecological cancer survivors. Cross-sectional data from the ROGY Care study were used, including endometrial and ovarian cancer patients treated with curative intent. The Impact of Cancer Scale (IOCv2) was used to assess cancer-related psychosocial factors. Self-reported changes in nutrients/food groups and in physical activity post-diagnosis were classified into change groups (less/equal/more). Multivariable logistic regression models were used to assess associations. Data from 229 cancer survivors (59% endometrial, 41% ovarian, mean age 66 ± 9.5, 70% tumor stage I) were analyzed. In total, 20% reported to eat healthier from diagnosis up to 18 months after initial treatment, 17% reported less physical activity and 20% more physical activity. Health awareness (OR 2.79, 95% CI: 1.38; 5.65), body change concerns (OR 3.04 95% CI: 1.71; 5.39), life interferences (OR 4.88 95% 2.29; 10.38) and worry (OR 2.62, 95% CI: 1.42; 4.85) were significantly associated with less physical activity up to 18 months after initial treatment whereby gastrointestinal symptoms were an important confounder. This study underlines the need to raise awareness of the benefits of a healthy lifestyle and to provide tailored lifestyle advice, taking into account survivors’ health awareness, body change concerns, life interferences, worry and gastrointestinal symptoms, in order to improve health behavior among gynecological cancer survivors. http://clinicaltrials.gov Identifier: NCT01185626, August 20, 2010

Real-time symptom monitoring using a mobile phone is potentially advantageous for patients receiving oral chemotherapy. We therefore conducted a pilot study of patient dose adaptation using mobile phone monitoring of specific symptoms to investigate relative dose intensity of capecitabine, level of toxicity and perceived supportive care. Patients with breast or colorectal cancer receiving capecitabine completed a symptom, temperature and dose diary twice a day using a mobile phone application. This information was encrypted and automatically transmitted in real time to a secure server, with moderate levels of toxicity automatically prompting self-care symptom management messages on the screen of the patient’s mobile phone or in severe cases, a call from a specialist nurse to advise on care according to an agreed protocol. Patients (n = 26) completed the mobile phone diary on 92.6 % of occasions. Twelve patients had a maximum toxicity grade of 3 (46.2 %). The average dose intensity for all patients as a percentage of standard dose was 90 %. In eight patients, the dose of capecitabine was reduced, and in eight patients, the dose of capecitabine was increased. Patients and healthcare professionals involved felt reassured by the novel monitoring system, in particular, during out of hours. It is possible to optimise the individual dose of oral chemotherapy safely including dose increase and to manage chemotherapy side effects effectively using real-time mobile phone monitoring of toxicity parameters entered by the patient.

Patient associations for cancer patients (PACPs) are increasing in number as well as in the number of members. We utilised a questionnaire to investigate how members of 13 PACPs motivated their memberships. The study included 1,810 individuals who had been treated for breast cancer, gynaecological cancer, or prostate cancer. Through questionnaires these individuals were asked to articulate why they became and chose to remain members. Descriptive statistics and content analyses were used to analyse the open and structured questions. Motives for membership reflected both benefits for the individuals and the welfare of others; themes such as ‘needs related to having cancer’ (reported by 33% as motives for becoming members; 14% for remaining members), ‘wanted to use the PACP’s information and activities’ (24%; 38%) and ‘wanted to support the PACP and its possibilities to have an impact’ (9%; 20%) were dominant. The theme ‘needs and experiences related to having cancer’ was more common among members with breast cancer (38%) and ovarian cancer (36%) than among members with prostate cancer (25%), whereas 53% of men with prostate cancer reported ‘wanted to use the PACP’s information and activities’ compared to 19–9% among female members. The motives showed that needs related to having cancer and that activities and information offered by the PACPs were important to the members, as were their beliefs that the PACP prompted issues that were important to the members.

Knowledge regarding risk factors for pain in the long term after surgery for breast cancer may be of great value in preventing this prevalent and debilitating side effect. Despite the biopsychosocial nature of pain, the predictive value of both pre- and postoperative biopsychosocial functioning for long-term pain intensity and pain-related disability has not yet been studied. One hundred sixty-six women planned for unilateral breast cancer surgery were included in this prospective cohort study. Pre- and postoperative outcomes related to pain, psychosocial, and somatosensory functioning (questionnaires and quantitative sensory testing) were evaluated as risk factors for pain intensity (visual analog scale) and pain-related disability (pain disability index) 1 year after surgery for breast cancer. Both bivariable and stepwise linear regression analyses were performed. The most consistent biopsychosocial risk factors were symptoms related to altered central somatosensory functioning (central sensitization inventory), psychological symptoms, and social support (psychological symptoms and support subscale of McGill Quality of Life Questionnaire). Results also showed that a pre- and postoperative disturbed functioning of the somatosensory nervous system in the surgical area could provide additional information regarding pain intensity or pain-related disability in the long term after surgery for breast cancer. This study revealed several biopsychosocial characteristics that might be used to identify women more vulnerable to have pain and pain-related disability in the long term after surgery for breast cancer, allowing for more effective pain management and prevention.

To evaluate the specificity, sensitivity, and accuracy of pain intensity assessments (0–10) conducted by registered nurses (RN) and clinical nurse assistants (CAN) as compared to those conducted by the palliative care consultant (PCC). We performed a retrospective review of charts of patients who had received palliative care consult between April 2002 and August 2002. Data on patient demographic, date of palliative care consult, and date and intensity of pain assessment were collected. A numerical rating scale from 0 (no pain) to 10 (worst pain) was used to assess pain intensity. The data were included for analysis if the pain intensity assessment was performed during the same shift by all three care providers (RN, CNA, and PCC). Forty-one charts were found to include a complete pain assessment performed by the RN, CNA, and PCC. The agreement of pain intensity between the PCC and both the RN and CNA was poor. For a diagnosis of moderate-to-severe pain, the RN’s intensity assessment had a specificity of 90% but a sensitivity of 45%, and the CNA’s intensity assessment had a specificity of 100% but a sensitivity of only 30%. The Spearman correlation coefficient between the intensity assessments performed by the PCC and the RN was 0.56 (p=0.00) and between those by the PCC and the CNA 0.22 (p=0.15). Lack of agreement between pain intensity assessments performed by the PCC and bedside nurse suggests possible inconsistencies in the way the assessments were performed. Better education on how to perform standard pain intensity assessment is needed.

The outbreak of coronavirus disease 2019 (COVID-19) markedly affected the way healthcare professionals approach patients with cancer worldwide, not only in terms of therapeutic decision-making but also in terms of supportive care. With the rapid appearance of signs and symptoms and the need of close re-assessment, standard management of oral mucositis has been challenged by physical distancing and limited resources due to the global crisis. Building on the clinical experience developed during the acute phase by members of the Mucositis Study Group of the Multinational Association of Supportive Care in Cancer/International Society of Oral Oncology (MASCC/ISOO), the implications of COVID-19 on the prevention, assessment, and treatment of mucositis are critically reported. Inspired by the restructuring of supportive care measures in response to the pandemic, suggestions for new models of approaching acute side effects are also discussed.