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Simple Summary: An emerging group of advanced cancer patients are living long term on systemic treatment. However, studies examining the psychosocial impact of this prolonged cancer treatment trajectory are scarce. This scoping review summarizes findings on these psychosocial issues, as well as the terminology used to refer to these patients. Prominent psychosocial outcomes included uncertainty, anxiety, and fear of disease progression or death, hope, loss and worries about loved ones and changes in social life. These themes were not extensively investigated in research using validated psychological questionnaires. More quantitative research in this area should be conducted to further understand these psychological constructs. A large variety of terms used to refer to the patient group was observed, which calls for a uniform definition to better address this specific patient group in research and in practice. By identifying key themes and gaps in the literature, directions for future research and clinical practice can be provided. (1) Background: Studies examining the psychosocial impact of living long term on systemic treatment in advanced cancer patients are scarce. This scoping review aimed to answer the research question "What has been reported about psychosocial factors among patients living with advanced cancer receiving life-long systemic treatment?", by synthesizing psychosocial data, and evaluating the terminology used to address these patients; (2) Methods: This scoping review was conducted following the five stages of the framework of Arksey and O'Malley (2005); (3) Results: 141 articles published between 2000 and 2021 (69% after 2015) were included. A large variety of terms referring to the patient group was observed. Synthesizing qualitative studies identified ongoing uncertainty, anxiety and fear of disease progression or death, hope in treatment results and new treatment options, loss in several aspects of life, and worries about the impact of disease on loved ones and changes in social life to be prominent psychosocial themes. Of 82 quantitative studies included in the review, 76% examined quality of life, 46% fear of disease progression or death, 26% distress or depression, and 4% hope, while few studies reported on adaptation or cognitive aspects. No quantitative studies focused on uncertainty, loss, or social impact; (4) Conclusion and clinical implications: Prominent psychosocial themes reported in qualitative studies were not included in quantitative research using specific validated questionnaires. More robust studies using quantitative research designs should be conducted to further understand these psychological constructs. Furthermore, the diversity of terminology found in the literature calls for a uniform definition to better address this specific patient group in research and in practice. [ABSTRACT FROM AUTHOR]

Background: To investigate associations between psychological problems and the use of healthcare and informal care and total costs among head and neck cancer (HNC) patients. Method: Data were used of the NETherlands QUality of Life and Biomedical Cohort study. Anxiety and depression disorder (diagnostic interview), distress, symptoms of anxiety and depression (HADS), and fear of cancer recurrence (FCR) and cancer worry scale (CWS) were measured at baseline and at 12-month follow-up. Care use and costs (questionnaire) were measured at baseline, 3-, 6-, 12-, and 24-month follow-up. Associations between psychological problems and care use/costs were investigated using logistic and multiple regression analyses. Results: Data of 558 patients were used. Distress, symptoms of anxiety or depression, FCR, and/or anxiety disorder at baseline were significantly associated with higher use of primary care, supportive care, and/or informal care (odds ratios (ORs) between 1.55 and 4.76). Symptoms of anxiety, FCR, and/or depression disorder at 12-month follow-up were significantly associated with use of primary care, supportive care, and/or informal care (ORs between 1.74 and 6.42). Distress, symptoms of anxiety, and FCR at baseline were associated with higher total costs. Discussion: HNC patients with psychological problems make more use of healthcare and informal care and have higher costs. This is not the result of worse clinical outcomes. [ABSTRACT FROM AUTHOR]

Simple Summary: Adolescents and young adults (AYA), aged 18–39 years at first cancer diagnosis, are recognized as a distinct population within the oncology community due to the unique challenges they encounter including recognition, diagnosis, treatment, and monitoring of their disease. It is imperative for advances in the field of AYA oncology to pool data sources (patient-reported outcomes, clinical, treatment, genetic, and biological data) across institutions and countries and create large cohorts that include the full range of AYA ages and diagnoses to be able to address the many pressing questions that remain unanswered in this vulnerable population. The Dutch COMPRAYA study aims to examine the incidence, risk factors, and mechanisms of impaired health outcomes (short- and long-term medical and psychosocial effects) over time among AYA cancer patients. The overarching aim is to provide a research infrastructure for (future) data analyses and observational retrospective/prospective ancillary studies and to expand data collection to other countries. Adolescent and young adult (AYA) cancer patients suffer from delay in diagnosis, and lack of centralized cancer care, age-adjusted expertise, and follow-up care. This group presents with a unique spectrum of cancers, distinct tumor biology, cancer risk factors, developmental challenges, and treatment regimens that differ from children and older adults. It is imperative for advances in the field of AYA oncology to pool data sources across institutions and create large cohorts to address the many pressing questions that remain unanswered in this vulnerable population. We will create a nationwide infrastructure (COMPRAYA) for research into the incidence, predictive/prognostic markers, and underlying mechanisms of medical and psychosocial outcomes for AYA between 18–39 years diagnosed with cancer. A prospective, observational cohort of (n = 4000), will be established. Patients will be asked to (1) complete patient-reported outcome measures; (2) donate a blood, hair, and stool samples (to obtain biochemical, hormonal, and inflammation parameters, and germline DNA); (3) give consent for use of routinely archived tumor tissue and clinical data extraction from medical records and registries; (4) have a clinic visit to assess vital parameters. Systematic and comprehensive collection of patient and tumor characteristics of AYA will support the development of evidence-based AYA care programs and guidelines. [ABSTRACT FROM AUTHOR]

This study aimed to identify health-related quality of life (HRQoL) issues of relevance for adolescent and young adult (AYA) cancer patients, the perception of relevant HRQoL issues for AYA in generalby the health care professionals (HCP), and discrepancies between issues identified by AYAs and HCP. Dutch AYAs aged 18–35 years at the time of cancer diagnosis (N = 83) and HCPs (N = 34) involved in AYA oncology were invited to complete the Quality of Life for Cancer Survivors questionnaire. HCPs rated physical symptoms such as fatigue, appetite, pain, constipation, sleep disorders, nausea and neuropathy among AYA cancer patients significantly higher (i.e., more problems) than AYA cancer patients. AYA cancer patients rated overall physical health and quality of life, happiness, satisfaction, usefulness and support from others, all positively formulated questions, significantly higher (i.e., more positive) than HCPs. The most highly rated issues (negative and positive combined) for AYAs were: perceived support from others, distress about initial cancer diagnosis, distress for family and overall quality of life. HCPs identified distress about diagnosis, treatment, family and interference of illness with employment/study as the most problematic issues (all negative) for AYAs. Five of the ten most common issues listed by patients and HCPs were the same. Male AYAs, patients treated with curative intent and those with a partner rated positive HRQoL issues higher than their counterparts. The discrepancy between the perception of patients and HCPs illustrates the importance of patient involvement in organizing physical and psychosocial care. [ABSTRACT FROM AUTHOR]

To date, it remains unknown which patients report a clinically-relevant improvement in fatigue following pulmonary rehabilitation (PR). The purpose of this study was to identify and characterize these responders. Demographics, lung function, anxiety (anxiety subscale of the 90-item symptom checklist (SCL-90-A)), depression (Beck depression inventory for primary care (BDI-PC)), exercise tolerance (six-minute walking distance test (6MWD)), and health status (Nijmegen clinical screening instrument (NCSI)) were assessed before and after a 12-week PR programme. Fatigue was assessed using the checklist individual strength (CIS)-Fatigue. Patients with a decline ≥ 10 points (minimally clinically important difference, MCID) on the CIS-Fatigue were defined as responders. Chronic obstructive pulmonary disease (COPD) patients (n = 446, 61 ± 9 years, 53% male, forced expiratory volume in 1 s (FEV1) 43% ± 18% predicted, 75% severe fatigue) were included. Mean change in fatigue after PR was 10 ± 12 points (p < 0.01) and exceeded the MCID. In total, 56% were identified as fatigue responders. Baseline CIS-Fatigue (45 ± 7 vs. 38 ± 9 points, respectively, p < 0.001) and health-related quality-of-life (HRQoL; p < 0.001) were different between responders and non-responders. No differences were found in demographics, baseline anxiety, depression, lung function, 6MWD, and dyspnoea (p-values > 0.01). Responders on fatigue reported a greater improvement in anxiety, depression, 6MWD, dyspnoea (all p-values < 0.001), and most health status parameters. PR reduces fatigue in COPD. Responders on fatigue have worse fatigue and HRQoL scores at baseline, and are also likely to be responders on other outcomes of PR. [ABSTRACT FROM AUTHOR]