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Simple Summary: Despite advances in head and neck cancer control, survivors encounter significant difficulties accessing survivorship care in the USA. We conducted a qualitative study aimed to better understand their experiences and identify unmet needs. Fifteen long-term head and neck cancer survivors were interviewed, where themes around chronic emotional distress, fatigue, and disruptions in daily life emerged across the focus group. Secondary issues included sleep problems, cognitive difficulties, and other health conditions. Surprisingly, physical symptoms like pain and changes in appetite were less discussed. These findings underscore the need for tailored holistic multi-dimensional cancer survivorship programs that address physical, emotional, and spiritual well-being. The study highlights the importance of increased awareness and comprehensive long-term support to prioritize and enhance quality of life for the head and neck cancer survivorship community. Improved rates of cancer control have increased the head and neck cancer survivor population. Cancer survivorship clinics are not widely available in the USA, and longitudinal supportive care for patients undergoing multimodal therapy has not advanced at a pace commensurate with improvements in cancer control. Consequently, a large head and neck cancer survivor population whose quality of life may be chronically and/or permanently diminished presently exists. This lack of awareness perpetuates under-recognition and under-investigation, leaving survivors' (mostly detrimental) experiences largely uncharted. We conducted a qualitative exploration of survivors' experiences, aiming to unpack the profound impact of late systemic symptoms on daily life, encompassing work, relationships, and self-identity in the head and neck cancer survivor community. The study included 15 remitted head and neck survivors, ≥12 months from their final treatment, who participated in semi-structured interviews conducted by a medical oncologist. Data analysis comprised qualitative thematic analysis, specifically inductive hierarchical linear modeling, enriched by a deductive approach of anecdotal clinical reporting. Results highlighted that 43.36% of all quotation material discussed in the interviews pertained to chronic emotion disturbance with significant implications for other domains of life. A central symptom cluster comprised impairments in mood/emotions, daily activity, and significant fatigue. Dysfunction in sleep, other medical conditions, and cognitive deficits comprised a secondary cluster. Physical dysfunctionality, encompassing pain, appetite, and eating, and alterations in experienced body temperature, constituted a tertiary cluster, and perhaps were surprisingly the least discussed symptom burden among head and neck cancer survivors. Symptoms causing heightened long-term survivor burden may be considered epiphenomenal to central physical dysfunctionality, albeit being presently the least represented in cancer survivor care programs. Moving forward, the development of targeted and multi-dimensional treatment programs that encompass physical, psychosocial, and spiritual domains are needed to increase clinical specificity and effective holistic long-term solutions that will foster a more compassionate and informed future of care for the cancer survivorship community. [ABSTRACT FROM AUTHOR]

Simple Summary: Superficial bladder cancer is a common disease. The standard method for treatment is a transurethral resection of bladder tumour (TURBT). This is a surgery under general anaesthesia with a complication rate of up to 26%, and it is potentially associated with severe side effects. A newer method, transurethral laser ablation (TULA), is a less invasive procedure performed under local anaesthesia and with a lower risk of complications. We aimed to compare these different transurethral procedures in the treatment of bladder tumours to evaluate any clinically relevant differences in symptoms and side effects. We used questionnaires regarding urinary symptoms, postoperative side effects, and quality of life. We showed that patients undergoing TURBT reported a more extensive early symptom burden and had a higher need for contacting the healthcare system compared to TULA-treated patients. If some TURBTs can be replaced with TULA, it will be beneficial for both future patients and the healthcare system. The standard procedure for diagnosis and treatment of bladder tumours, transurethral resection of bladder tumour (TURBT), is associated with a complication rate of up to 26% and potentially has severe influence on patient-reported outcomes (PRO). Outpatient transurethral laser ablation (TULA) is an emerging new modality that is less invasive with a lower risk of complications and, thereby, possibly enhanced PRO. We collected PRO following transurethral procedures in treatment of bladder tumours to evaluate any clinically relevant differences in symptoms and side effects. This prospective observational study recruited consecutive patients undergoing different bladder tumour-related transurethral procedures. Patients filled out questionnaires regarding urinary symptoms (ICIQ-LUTS), postoperative side effects, and quality of life (EQ-5D-3L) at days 1 and 14 postoperatively. In total, 108 patients participated. The most frequently reported outcomes were postoperative haematuria and pain. Patients undergoing TURBT reported longer lasting haematuria, a higher perception of pain, and a more negative impact on quality of life compared to patients undergoing TULA. TURBT-treated patients had more cases of acute urinary retention and a higher need for contacting the healthcare system. Side effects following transurethral procedures were common but generally not severe. The early symptom burden following TURBT was more extensive than that following TULA. [ABSTRACT FROM AUTHOR]

Simple Summary: The study aimed to assess changes in quality of life and symptom burden among palliative care patients during one week of inpatient care in a palliative care unit, comparing those who had prior outpatient palliative care with those who did not. Using the EORTC QLQ-C30 instrument, patients were evaluated at admission (T0) and one week later (T1). Patients in both groups showed significant and clinically meaningful improvements in global health/QoL, emotional functioning, nausea, vomiting, pain, and insomnia. The study suggests that even brief inpatient palliative care can substantially enhance the quality of life and reduce symptom burden, benefiting patients regardless of prior outpatient support. Purpose: This study sought to investigate changes in quality of life (QoL) and symptom burden among palliative care patients undergoing one week of inpatient care in a specialized palliative care unit (PCU). The patient population was stratified into two groups, with one group pretreated from pre-admission palliative care (PC) provided by an outpatient multidisciplinary PC team, while the other group did not receive such support prior to admission. Although the average duration of treatment at a PCU in Germany is 1–2 weeks, the question also arises as to whether a significant improvement in symptom burden and QoL can be expected after just one week of PC in a PCU. Methods: PC patients with various cancer entities were prospectively included in a non-randomized study. Patients in group 1 received outpatient specialized PC prior to admission, while patients in group 2 did not. Over an 8-month period, we gathered data from one academic cancer center, utilizing the EORTC QLQ-C30, one of the most widely used patient-reported outcome (PRO) instruments to assess health-related QoL in cancer patients. Patients completed the QLQ-C30 at T0 (admission or one day later) and T1 (one week later), enabling the assessment of potential changes in their QoL and symptom burden over time. Results: A total of 103 patients (51.5% male) were enrolled (group 1: 42%, group 2: 58%). At T0, there were no significant differences regarding QLQ-C30 scores between groups 1 and 2, except from global health/QoL (group 1 mean 20.7, group 2 mean 25.6, p = 0.026). Over the course of one week several significant and clinically relevant changes were found: Emotional functioning demonstrated an uplift in both groups (group 1: mean 41.5 IQR 33 vs. 53.1 IQR 50, p = 0.014, group 2: mean 48.2 IQR 46 vs. 56.8 IQR 58, p = 0.029), as did the global health status (group 1: M 20.7 IQR 17 vs. 36.2 IQR 33, p < 0.001, group 2: M 25.6 IQR 25 vs. 35.3 IQR 33, p < 0.001). Nausea and vomiting showed a reduction (group 1: M 29.9 IQR 17 vs. 6.8 IQR 0, p < 0.001, group 2: M 22.6 IQR 17 vs. 8.2 IQR 0, p < 0.001), along with a notable decline in pain (group 1: M 67.4 IQR 67 vs. 25.3 IQR 17, p < 0.001, group 2: M 73.1 IQR 83 vs. 29.7 IQR 17, p < 0.001). A decrease was observed in insomnia (group 1: M 63.6 IQR 67 vs. 27.6 IQR 33, p < 0.001, group 2: M 60.1 IQR 67 vs. 27.6 IQR 33, p < 0.001). There were no significant differences between groups 1 and 2 in the extent of improvement in the various symptom scales from T0 to T1. Conclusion: The findings of our study demonstrate that QoL and several symptoms prevalent in cancer patients cared for in the PCU experienced significant enhancement over the span of just one week. Both groups, patients receiving specialized outpatient PC prior to admission and those without, equally benefited from inpatient PC. All mentioned changes from T0 to T1 are considered not only significant but clinically relevant. [ABSTRACT FROM AUTHOR]

Simple Summary: Cancer is the most common medical condition among Canadians who receive Medical Assistance in Dying (MAID). We aimed to evaluate if people who choose MAID have worse symptoms compared to those who do not. Using data from cancer patients in Alberta who died between July 2017 and January 2019, we carefully compared two groups: those who received MAID (n = 149) and those who did not receive MAID (n = 149). Both groups had worsening symptoms in the year before death. Those who received MAID had slightly worse anxiety and slightly worse lack of appetite than those who did not receive MAID. Overall, our results showed that symptoms between the groups were similar, and that those who received MAID did not have worse overall symptoms. This study highlights the importance of regular symptom screening and early symptom intervention for all patients with advancing cancer. Cancer is the primary underlying condition for most Canadians who are provided Medical Assistance in Dying (MAID). However, it is unknown whether cancer patients who are provided MAID experience disproportionally higher symptom burden compared to those who are not provided MAID. Thus, we used a propensity-score-matched cohort design to evaluate longitudinal symptom trajectories over the last 12 months of patients' lives, comparing cancer patients in Alberta who were and were not provided MAID. We utilized routinely collected retrospective Patient-Reported Outcomes (PROs) data from the Edmonton Symptom Assessment System (ESAS-r) reported by Albertans with cancer who died between July 2017 and January 2019. The data were analyzed using mixed-effect models for repeated measures to compare differences in symptom trajectories between the cohorts over time. Both cohorts experienced increasing severity in all symptoms in the year prior to death (β from 0.086 to 0.231, p ≤.001 to.002). Those in the MAID cohort reported significantly greater anxiety (β = −0.831, p =.044) and greater lack of appetite (β = −0.934, p =.039) compared to those in the non-MAID cohort. The majority (65.8%) of patients who received MAID submitted their request for MAID within one month of their death. Overall, the MAID patients did not experience disproportionally higher symptom burden. These results emphasize opportunities to address patient suffering for all patients with cancer through routine collection of PROs as well as targeted and early palliative approaches to care. [ABSTRACT FROM AUTHOR]

Simple Summary: Catastrophism was not associated with the levels of pain intensity, PSG, PSGR, and PGI for pain, except the rumination subscale that was independently associated with pain intensity at T0. A comprehensive palliative care management provided the relevant changes in symptom burden and annulled the pain expression associated with rumination. Background: Pain catastrophizing is a group of negative irrational cognitions in the context of anticipated or actual pain. The aim of this study was to decipher the possible role of catastrophism on pain expression and outcomes after a comprehensive palliative care treatment. Methods: A consecutive sample of patients with uncontrolled pain was assessed. Demographic characteristics, symptom intensity included in the Edmonton symptom assessment system (ESAS), and opioid drugs used were recorded at admission (T0). The Pain Catastrophizing Scale (PCS) was measured for patients. Patients were also asked about their personalized symptom goal (PSG) for each symptom of ESAS. One week after a comprehensive palliative care treatment (T7), ESAS and opioid doses used were recorded again, and the number of patients who achieved their PSG (PSGR) were calculated. At the same interval (T7), Minimal Clinically Important Difference (MCID) was calculated using patient global impression (PGI). Results: Ninety-five patients were eligible. A significant decrease in symptom intensity was reported for all ESAS items. PGI was positive for all symptoms, with higher values for pain, poor well-being, and poor sleep. Only the rumination subscale of catastrophism was significantly associated with pain at T0 (B = 0.540; p = 0.034). Conclusions: Catastrophism was not associated with the levels of pain intensity, PSG, PSGR, and PGI for pain, except the rumination subscale that was associated with pain intensity at T0. A comprehensive palliative care management provided the relevant changes in symptom burden, undoing the pain expression associated with rumination. [ABSTRACT FROM AUTHOR]

Simple Summary: This study examined patient-reported outcomes from a local tertiary palliative care unit (TPCU; locally named the IPCU) compared to published outcomes from other Canadian TPCUs. A retrospective file review revealed that compared to published Canadian TPCU data, the IPCU population was younger with more advanced cancer, the rate of hospital deaths was lower, and discharge to preferred locations was better. This service is well integrated in a variety of palliative care services within the health region, providing care at appropriate levels of need. We interpret that when enveloped in well-organized services within the region, a TPCU may be better able to prioritize patients with later-stage disease, facilitate the management of symptom crises earlier, and improve the rates of discharge to preferred locations. Palliative care offers symptom relief and improved quality of life. Tertiary palliative care units (TPCUs) focus on complex suffering under the care of specialist palliative physicians and interdisciplinary teams. The Intensive Palliative Care Unit (IPCU) is a TPCU integrated in well-developed region-wide palliative services in Calgary, Canada. We compared the population accessing the IPCU to published data from other Canadian sites. Methods: A retrospective chart review was conducted using 8 sample months over a 2-year period. We gleaned psychosocial and medical demographics alongside the self-reported symptom burden on the Edmonton Symptom Assessment System. Descriptive statistics were calculated. Results: Adults (n = 117) with cancer admitted to the IPCU were 5–10 years younger, had later-stage cancer, and had higher discharges to preferred locations than other published Canadian TPCUs. Up to two months before admission, most commonly reported symptoms were consistent with the outpatient literature although with higher reported intensity. Discussion: With more advanced disease, younger age, and elevated symptom burden before admission, the IPCU still discharged patients to preferred locations at higher rates than other sites. This may be due to integration in the region's organized palliative care services. Conclusion: With proper integration, a TPCU may be able to improve quality of life and reduce deaths in hospitals. [ABSTRACT FROM AUTHOR]

Simple Summary: Professionals of the healthcare system face the challenge of providing suitable care delivery for inpatients with advanced cancer. External assessments, such as nurse-reported symptom burden, tend to underrate patients' distress, as has already been shown in different studies. In contrast to that, patient-reported outcome measures (PROMs) have been shown to be effective as a systematic assessment; however, they are not yet implemented into daily routine. The aim of this retrospective study is to compare the information provided by PROMs and nurse-reported assessment to identify overlaps and differences in the current symptom burden. Therefore, collected data were analyzed from both PROMs and nurse-reported assessment from 230 inpatients of a major German Comprehensive Cancer Center. We discovered that some features of physical and psychological distress were underrated by nursing staff. Supplementing daily symptom assessment used by nursing staff with systematic ePROMs may improve the quality of supportive and palliative care of inpatients with advanced cancer. For advanced cancer inpatients, the established standard for gathering information about symptom burden involves a daily assessment by nursing staff using validated assessments. In contrast, a systematic assessment of patient-reported outcome measures (PROMs) is required, but it is not yet systematically implemented. We hypothesized that current practice results in underrating the severity of patients' symptom burden. To explore this hypothesis, we have established systematic electronic PROMs (ePROMs) using validated instruments at a major German Comprehensive Cancer Center. In this retrospective, non-interventional study, lasting from September 2021 to February 2022, we analyzed collected data from 230 inpatients. Symptom burden obtained by nursing staff was compared to the data acquired by ePROMs. Differences were detected by performing descriptive analyses, Chi-Square tests, Fisher's exact, Phi-correlation, Wilcoxon tests, and Cohen's r. Our analyses pointed out that pain and anxiety especially were significantly underrated by nursing staff. Nursing staff ranked these symptoms as non-existent, whereas patients stated at least mild symptom burden (pain: meanNRS/epaAC = 0 (no); meanePROM = 1 (mild); p < 0.05; r = 0.46; anxiety: meanepaAC = 0 (no); meanePROM = 1 (mild); p < 0.05; r = 0.48). In conclusion, supplementing routine symptom assessment used daily by nursing staff with the systematic, e-health-enabled acquisition of PROMs may improve the quality of supportive and palliative care. [ABSTRACT FROM AUTHOR]

Simple Summary: Desmoid-type fibromatosis (DTF) is an uncommon soft tissue tumour with a high recurrence rate after resection. DTF does not metastasise, but its locally aggressive tumour growth and chronic character can cause significant morbidity. Although overall mortality is low, patients can experience a high symptom burden, making assessment of health-related quality of life (HRQoL) highly relevant. At present, data on HRQoL in DTF patients are limited. The QUALIFIED study aims to (1) pre-test a previously developed DTF-specific HRQoL tool (the DTF-QoL); (2) evaluate prevalence of HRQoL issues in adult DTF patients; and (3) identify subgroups at risk of impaired HRQoL. An international, multicentre, cross-sectional, observational cohort study will be conducted to validate the DTF-specific HRQoL questionnaire and to gain more insight into the issues experienced by DTF patients. This information will help to improve clinical practice, symptom control and patient satisfaction. When validated, the DTF-QoL can be used in both clinical and research settings to evaluate HRQoL of DTF patients. Sporadic desmoid-type fibromatosis (DTF) is a rare soft tissue tumour with an unpredictable clinical course. These tumours are incapable of metastasising, but their local aggressive tumour growth and tendency to recur locally can result in a substantial symptom burden. Measuring the impact of DTF on health-related quality of life (HRQoL) can be challenging due to the variable clinical presentation of the disease. Therefore, a HRQoL instrument assessing DTF-specific issues is needed. The QUALIFIED study aims to (1) pre-test a previously developed DTF-specific HRQoL tool (the DTF-QoL); (2) evaluate prevalence of HRQoL issues in adult DTF patients; and (3) identify subgroups at risk of impaired HRQoL. This study (NCT04289077) is an international, multicentre, cross-sectional, observational cohort study. Patients ≥ 18 years with sporadic DTF from the Netherlands and the United Kingdom will be invited to complete a set of questionnaires specifically composed for this patient group. Questionnaires will be completed using PROFILES (Patient Reported Outcomes Following Initial treatment and Long-term Evaluation of Survivorship). Analyses will include testing the psychometric properties of the DTF-QoL and evaluating the prevalence of HRQoL issues using the DTF-QoL, EORTC QOL-C30 and EQ-5D-5L, among other questionnaires. This study will provide insight into HRQoL issues experienced by patients with DTF. Awareness of these issues and the implementation of the DTF-QoL in research and clinical practice can help to improve overall HRQoL and to provide personalised care. [ABSTRACT FROM AUTHOR]

Simple Summary: We know that socio-economic factors influence delay in presentation and diagnosis of cancer and that patients living in areas of greater socio-economic deprivation are less likely to be referred to palliative care services including hospice. However, very little is known regarding the impact of socio-economic deprivation on symptom burden in advanced cancer patients. Our study found that patients experiencing greater socio-economic deprivation were more likely to report depression and pain and greater global symptom burden than patients from less socio-economically deprived areas. We also found that reporting a lack of information at time of diagnosis was significantly associated with socio-economic deprivation. Although more than one-third of patients recruited into this study were diagnosed with cancer within the preceding 12 months, this was not associated with socio-economic factors and socio-economic factors did not appear to influence survival in our study. The impact of socio-economic factors on symptom burden and information needs should be acknowledged within palliative care settings. Socio-economic deprivation is known to impact on cancer diagnosis, treatment and access to services, but little is known of the impact of socio-economic deprivation on symptom burden in patients with advanced cancer. Patients with advanced cancer attending hospice day services were recruited into a 24 week longitudinal study. An area-based index of social deprivation was collected along with depression and symptom burden at baseline, 8, 16 and 24 weeks. Of the 595 patients included, with an age range of 33–89 years and a mean age of 68 years, 67% were female, and 37% were diagnosed with cancer in the last 12 months. Twenty nine percent lived in one of the most deprived 20% of neighbourhoods. Patients living in the most socio-economically deprived areas were significantly likely to report receiving insufficient information regarding their cancer at diagnosis (p = 0.007), greater pain (p = 0.02), moderate to severe depression (p = 0.04) and higher global symptom burden (p = 0.04). This study is the first to report that patients with advanced cancer attending hospice services, living in the most deprived neighbourhoods experience significantly greater symptom burden, notably depression and pain. We recommend using patient outcome measures in order to provide targeted support and thereby reduce the increased symptom burden that socio-economically disadvantaged patients experience at the end of life. [ABSTRACT FROM AUTHOR]

Simple Summary: The aim of this research was to investigate the health-related quality of life (HRQoL) in patients with Philadelphia-negative myeloproliferative neoplasms (chronic blood cancers) in Denmark. A nationwide questionnaire survey covering functioning, symptom burden, symptom profile, QoL, and lifestyle was performed. Patients registered in the National Patient Register with a diagnosis of Philadelphia-negative myeloproliferative neoplasm were invited. A total of 2228 patients participated in the survey and these could be divided into groups of participants with different subtypes of Phildelphia-negative myeloproliferative neoplasms. The HRQoL across groups of participants with different subtypes of the disease was compared, and the HRQoL of all participants and the general population was compared in order to investigate for a potential difference. The participants reported their HRQoL to be inferior to the general population, but the difference was minor. The differences in HRQoL across groups of participants with different subtypes of the disease were subtle. Fatigue and sexual problems were prevalent and burdensome. Participants reported a slightly healthier lifestyle than the general population. Understanding HRQoL of these patients is a necessity to be able to provide the best treatment and rehabilitation activities. Previous studies have clarified that many patients with Philadelphia-negative myeloproliferative neoplasms (MPNs) have burdensome symptom profiles and accordingly impaired functioning and quality of life (QoL). In Denmark, all MPN patients are affiliated with public hospitals and because of a healthcare system financed by taxpayers these patients do not have any financial costs related to the hematological disease. Diagnoses are recorded for all patients in hospitals, and diagnosis codes are communicated to the National Patient Register (NPR). Owing to this, it was possible to contribute to the elucidation of Philadelphia-negative MPN patients' health-related quality of life (HRQoL), by conducting a nationwide, population-based, cross-sectional HRQoL survey of these patients with cost-free access to the best available, suitable medical treatment. The survey contained validated questionnaires covering functioning, symptom burden, symptom profile, QoL, and additional questions on lifestyle. Information on comorbid diagnoses was obtained from the NPR. The participants' HRQoL was compared to the general population. Moreover, differences in HRQoL across essential thrombocythemia, polycythemia vera, myelofibrosis, and unclassifiable MPN participants were investigated, adjusted for age, sex, comorbidity, and lifestyle. To the best of our knowledge this is the first survey of HRQoL in patients with unclassifiable MPN. A total of 2228 Philadelphia-negative MPN patients participated. The participants reported their HRQoL to be inferior to the general population, but the difference was minor. The differences in HRQoL across groups of participants with different MPN subtypes were subtle. Fatigue and sexual problems were prevalent and burdensome. Overall, participants reported a slightly healthier lifestyle compared to the general population. [ABSTRACT FROM AUTHOR]

Elevated body mass index (BMI) is a global health problem, leading to enhanced mortality and the increased risk of several cancers including essential thrombocythemia (ET), a subtype of the Philadelphia-chromosome negative myeloproliferative neoplasms (MPN). Furthermore, evidence states that BMI is associated with the severity of symptom burden among cancer patients. MPN patients often suffer from severe symptom burden. The purpose of this study was to examine whether deviations from a normal BMI in an MPN population are associated with higher symptom burden and reduced quality of life (QoL). A combined analysis of two large cross-sectional surveys, the Danish Population-based Study, MPNhealthSurvey (n = 2044), and the international Fatigue Study (n = 1070), was performed. Symptoms and QoL were assessed using the validated Myeloproliferative Neoplasm Symptom Assessment Form (MPN-SAF). Analysis of covariance was used to estimate the effects of different BMI categories on symptom scores while adjusting for age, sex, and MPN subtype. A U-shaped association between BMI and Total Symptom Burden was observed in both datasets with significantly higher mean scores for underweight and obese patients relative to normal weight (mean difference: underweight 5.51 (25.8%), p = 0.006; obese 5.70 (26.6%) p < 0.001). This is an important finding, as BMI is a potentially modifiable factor in the care of MPN patients. [ABSTRACT FROM AUTHOR]

Hematopoietic stem cells (HSCs) maintain an organism’s immune system for a lifetime, and derangements in HSC proliferation and differentiation result in hematologic malignancies. Chronic inflammation plays a contributory if not causal role in HSC dysfunction. Inflammation induces HSC exhaustion, which promotes the emergence of mutant clones that may be resistant to an inflammatory microenvironment; this likely promotes the onset of a myeloid hematologic malignancy. Inflammatory cytokines are characteristically high in patients with myeloid malignancies and are linked to disease initiation, symptom burden, disease progression, and worsened prognostic survival. This review will cover our current understanding of the role of inflammation in the initiation, progression, and complications of myeloid hematologic malignancies, drawing from clinical studies as well as murine models. We will also highlight inflammation as a therapeutic target in hematologic malignancies. [ABSTRACT FROM AUTHOR]