"Like not having an arm": a qualitative study of the impact of visitor restrictions on cancer care during the COVID-19 pandemic.

PURPOSE: Visitor restriction policies to prevent the spread of COVID-19 among patients and clinicians were widespread during the pandemic, resulting in the exclusion of caregivers at key points of cancer care and treatment decision-making. The aim of this study was to explore how visitor restrictions impacted cancer treatment decision-making and care from patient and physician perspectives. METHODS: Sixty-seven interviews, including 48 cancer patients and 19 cancer and palliative care physicians from four academic cancer centers in the USA between August 2020 and July 2021. RESULTS: Visitor restrictions that prevented caregivers from participating in clinic appointments and perioperative hospital care created challenges in cancer care that spanned three domains: practical, social, and informational. We identified eight themes that characterized challenges within the three domains across all three groups, and that these challenges had negative emotional and psychological consequences for both groups. Physicians perceived that patients' negative experiences due to lack of support through the physical presence of caregivers may have worsened patient outcomes. CONCLUSIONS: Our data demonstrate the tripartite structure of the therapeutic relationship in cancer care with caregivers providing critical support in the decision-making and care process to both patients and physicians. Caregiver absences led to practical, psychosocial, and informational burdens on both groups, and likely increased the risk of burnout among physicians. Our findings suggest that the quality of cancer care can be enhanced by engaging caregivers and promoting their physical presence during clinical encounters.

Preliminary testing of "roadmap to parenthood" decision aid and planning tool for family building after cancer: Results of a single-arm pilot study.

OBJECTIVE: Many young adult female cancer survivors need to use reproductive medicine, surrogacy, or adoption to have a child. This study pilot tested Roadmap to Parenthood, a web-based, self-guided decision aid and planning tool for family building after cancer (disease agnostic). METHODS: A single-arm pilot study tested feasibility, acceptability, and obtained effect size estimates of the Roadmap tool. Participants, recruited via hospital-based and social media strategies, completed a baseline survey (T1), accessed the Roadmap tool (website), then completed surveys at one- and 3-months (T2 and T3, respectively). Feasibility and acceptability were evaluated with rates of eligibility, enrollment, and survey completion, and feedback. Pairwise t-tests and repeated measures ANOVA evaluated usage effects. Effect size estimates were calculated. RESULTS: Participants (N = 98) averaged 31 years old (SD = 5.61); 71% were nulliparous. Enrollment rate was 73%, T1-T2 completion rate was 80%, and 93% accessed the website. From T1-T2, participants reported improvements in decisional conflict (p < 0.001; Cohen's d = 0.85), unmet information needs (p < 0.001; Cohen's d = 0.70), self-efficacy (p = 0.003; Cohen's d = 0.40), and self-efficacy for managing negative emotions (p = 0.03; Cohen's d = 0.29); effects were sustained at T3. There was no change in reproductive distress (p = 0.22). By T3, 94% reported increased consideration of preparatory actions and 20%-61% completed such actions. CONCLUSIONS: The Roadmap intervention was feasible to conduct, acceptable to users, and led to improvements in key psychosocial outcomes. Future directions will test intervention efficacy in a randomized controlled trial with a larger sample and over a longer period. A web-based tool may help women make decisions about family building after cancer and prepare for potential challenges.

Identification and management of mental health distress in Moroccan patients with cancer: Strategies adopted by oncology nurses and barriers to practice.

BACKGROUND: Adressing mental distress among cancer patients presents a substantial challenge in the delivery of oncology care. AIMS: This present study aims to explore the nursing strategies for identifying and managing distress in cancer patients as well as the concomitant barriers that prevent them from achieving this task. METHODS: This qualitative study is based on a semi-structured interview with 25 practicing nurses in oncology. RESULTS: Strategies used by nurses to identify mental distress in their patients include: receiving information, mobilizing interpersonal skills, and identifying causes of distress. When asked about the barriers that hinder the practice of identifying and responding to patients' distress, nurses reported facing several barriers that can be classified into three categories: health care system-related barriers, patient-related barriers, and nurse-related barriers. CONCLUSION: Oncology nurses should benefit from specific training on the systematic assessment of mental distress in cancer patients, in order to improve the overall management of oncology patients.

Knowledge and attitude on childhood cancer survivorship among healthcare trainees: a multicentre study from India.

BACKGROUND: The proportion of childhood cancer survivors (CCS) in low/middle-income countries (LMICs) is rising. CCS often develop several physical and psycho-social long-term adverse effects, with unique healthcare needs. Primary healthcare providers (primary care physicians (PCPs)), especially in LMICs, are often not equipped to handle survivorship care. This study aimed to assess knowledge, and attitude among trainee healthcare providers concerning major issues of paediatric survivorship care. METHODS: A multi-centre, cross-sectional, questionnaire-based study was conducted among nursing and medical undergraduate students, and postgraduate medical residents across three tertiary-care teaching hospitals in India-All India Institute of Medical Sciences, New Delhi; Jawaharlal Institute of Postgraduate Medical Education and Research, Puducherry; and Maulana Azad Medical College, New Delhi. A questionnaire with total of 24 questions (14 knowledge-based and 10 attitude-based) was finalised after validation by expert review and piloting. The major domains covered in the questionnaire included knowledge and attitude regarding long-term adverse effects and psychosocial, employment-related issues faced by the survivors. It was administered to the study participants electronically. The knowledge-based questions had true/false responses (scored as 0 or 1 if incorrect or correct, respectively). Attitude-based questions were scored as 5-point Likert scale. RESULTS: Total 898 responses were collected (median age: 21 years, 64% (576/898) female). Among the respondents, 44% were undergraduate medical students, 42% were nursing students and 14% were postgraduate medical residents. The mean (SD) of knowledge score was 8.72 (2.04) (out of 14). On multivariable analysis, only discipline of training predicted knowledge scores regarding survivorship care. Postgraduate medical residents (9.08) as well as undergraduate medical students (8.85), had significantly higher mean knowledge scores than nursing students (8.47) (p=0.004).Two questions were answered incorrectly by the majority; children and siblings of CCS need additional genetic screening (79% incorrectly answered true), and CCS face intimacy issues in relation to normal sexual functioning (59% incorrectly answered false).Nearly half (48%) of respondents believed that their knowledge of cancer survivorship issues was inadequate. Majority of respondents (84%) suggested that oncologists should handle long-term survivorship care rather than PCPs. CONCLUSION: Trainee healthcare providers in India reported inadequate knowledge regarding survivorship care. Improving awareness by incorporating survivorship in teaching curriculum is imperative to equip future PCPs to provide survivorship care across the country.

Relationship between dyspnoea and related factors in patients with cancer: a cross-sectional study.

OBJECTIVES: Dyspnoea is a common and distressing symptom in patients with cancer. We aimed to analyse the association between dyspnoea and related factors and to estimate their causal relationship. METHODS: A cross-sectional study was conducted. Patients with cancer with dyspnoea and a mean Numerical Rating Scale (NRS) of ≥3 over 24 hours were enrolled at 10 institutions in Japan from December 2019 to February 2021. The outcomes included dyspnoea, cough and pain NRS over 24 hours, Eastern Cooperative Oncology Group Performance Status, Hospital Anxiety and Depression Scale, Somatosensory Amplification Scale, opioids for dyspnoea and respiratory failure. Path analyses were conducted to estimate the direct and indirect paths with reference to dyspnoea and related factors. RESULTS: A total of 209 patients were enrolled and 208 patients were included in the analysis. Cough worsened dyspnoea (ß=0.136), dyspnoea increased emotional distress (ß=1.104), emotional distress increased somatosensory amplification (ß=0.249) and somatosensory amplification worsened cough (ß=0.053) according to path analysis. CONCLUSION: There may be a vicious circle among dyspnoea and related factors: cough worsened dyspnoea, dyspnoea increased emotional distress, emotional distress increased somatosensory amplification and somatosensory amplification worsened cough. When treating dyspnoea in patients with cancer, managing these factors aimed at interrupting this vicious circle may be useful. TRIAL REGISTRATION NUMBER: UMIN Clinical Trials Registry (UMIN000038820).

The effectiveness of therapeutic artmaking on depression, anxiety, quality of life, and psychological distress in cancer patients on chemotherapy: a systematic review of the literature.

OBJECTIVES: The purpose of this study was to evaluate the evidence of art therapy on depression, anxiety, quality of life, and mental distress in cancer patients undergoing chemotherapy. METHODS: A systematic literature search was conducted. A systematic search of online electronic databases including, PubMed/MEDLINE, Scopus Web of Science, PsycINFO, and EMBASE was performed using keywords extracted from Medical Subject Headings such as "Art Therapy," and "Neoplasms," "Cancer," and "Chemotherapy" from the earliest to January 11, 2023. A total of 3890 publications were assessed for relevance by title and abstract. The remaining 1298 articles were examined using three inclusion criteria: interventions were guided by an artist or art therapist, participants were actively involved in the creative process, and anxiety, depression, and/or quality of life were included as outcome measures. The methodological quality of the included studies was appraised using specific checklists. RESULT: A total of 495 patients with cancer undergoing chemotherapy participated in ten studies. Among the participants, 87.21% were female and 63.43% of them were in the intervention group. The mean age of the participants was 53.93 in five studies that reduced depression in cancer patients undergoing chemotherapy. Six studies investigated the effect of different art therapy methods on the anxiety of patients, which in four studies reduced their anxiety. Also, three studies investigated the effect of different art therapy methods on patients' distress, which in two studies reduced their distress. CONCLUSION: Art therapy had positive effects on depression, anxiety, quality of life, and psychological distress of cancer patients undergoing chemotherapy. Meanwhile, research on art therapy in cancer patients on chemotherapy is insufficient. We cannot conclude that art therapy benefits cancer patients on chemotherapy. More rigorous research is needed.

A systematic review of change in symptoms, well-being and quality of life with group singing in people with cancer and their caregivers.

PURPOSE: This systematic review aimed to assess the impact of group singing on physical function, cancer-related symptoms, well-being (emotional, physical, social, spiritual), and health-related quality of life in individuals with cancer and their caregivers. METHODS: A search was performed using Ovid MEDLINE, Embase, Scopus and Web of Science from inception to April 2023; key words included cancer, choir, and group singing. Observational cohort, prospective or retrospective studies, randomized controlled studies, and crossover studies were included. Two teams of independent reviewers extracted data and assessed the risk of bias using the Downs and Black Tool. RESULTS: A total of 6 studies (6 reports) met the inclusion criteria for this review, with a mix of study designs. The overall quality of the studies was poor. Group singing significantly reduced anxiety levels in those with cancer and their caregivers, while the effects on depression were variable and there was no impact on fatigue. Caregivers reported improved well-being, self-efficacy and self-esteem. Both those with cancer and their caregivers had reductions in fear, anger, confusion; and reported improvement in energy, relaxation and connectedness at longer term follow-up compared to no treatment. Those with cancer reported improvements in health-related quality of life domains of bodily pain, vitality and mental health with group singing, though the effects on caregivers were mixed. CONCLUSIONS: Group singing may have favourable effects on selected symptoms, aspects of well-being, and domains of health-related quality of life specific to vitality, bodily pain, and mental health in individuals with cancer and their caregivers.

Emulating trial to evaluate the effectiveness of routine supportive care on mortality among cancer patients experiencing distress at the time of diagnosis.

INTRODUCTION: Few studies have evaluated the effectiveness of interventions for distress during cancer diagnosis on clinical outcomes in a real-world setting. We aimed to evaluate whether routine information and psychosocial support to patients experiencing distress at the time of diagnosis could decrease the risk of mortality within 1 and 3 years after diagnosis. MATERIAL AND METHODS: We conducted a retrospective cohort study of 4880 newly diagnosed cancer patients who reported distress scores of ≥4 using the tablet or kiosk-based screening between July 2014 and December 2017 at a university-affiliated cancer center in Seoul, South Korea. We performed an emulated target trial with two groups: those that received information and psychosocial support and those that did not. Cox proportional hazards models were used to identify the associations between information and psychosocial support and all-cause mortality. RESULTS: Of all the patients, 16.6 % had routine information and psychosocial support. The hazard ratio (HR) for one-year mortality comparing participants with information and psychosocial support to those without it were 0.73 (95 % confidence interval (CI) = 0.54, 0.99). Age < 50 and 50 - <60 group had a stronger effect of information and psychosocial support on reducing mortality within one-year than these in age ≥ 60 (p for interaction = 0.03). In terms of three-year mortality, the HR comparing participants with information and psychosocial support to those without it was 0.93 (95 % CI = 0.76, 1.14). CONCLUSION: This large-scale real-world study suggests that timely psychosocial care benefits newly diagnosed cancer patients who had distress during pre-treatment period.

Factors associated with cancer disclosure in adolescent and young adult cancer survivors: An integrative review from the social-ecological model perspective.

PURPOSE: Young cancer survivors ("young survivors") may need to disclose their cancer experiences to reintegrate into society. In such cases, the recognition of social support through the disclosure of cancer experiences may prevent potential social disadvantages． This review aimed to describe the motivations, strategies and outcomes, and benefits and disadvantages of disclosure in young survivors based on the social-ecological model (SEM) to identify the support survivors need when disclosing their cancer experiences. METHODS: Using the integrated review methodology, we systematically searched six databases in English and Japanese as well as searched the reference lists of the selected studies. The themes identified via thematic analysis were categorized within the SEM levels. RESULTS: This review analyzed 14 studies and identified four themes, including "Motivation for Cancer Disclosure," "Barriers to Cancer Disclosure," "Consequences of Cancer Disclosure: Benefits," and "Consequences of Cancer Disclosure: Disadvantages." Motivations for young survivors to disclose their cancer involved post-cancer differences, perceptions, relationships, and social context. In navigating barriers, including self-stigma, peer exclusion, and discrimination, they employed strategies such as reassurance and information limitation. Tailored disclosure strategies at each SEM level offered social and psychological benefits, however, disadvantages, including stress, vulnerability, employment issues, and limited insurance coverage, were experienced by young survivors due to cancer disclosure. CONCLUSIONS: To optimize the benefits of cancer disclosure for young survivors, addressing psychological burdens, enhancing disclosure skills, offering familial psychological support, and fostering public awareness of cancer are essential.

Psychosocial interventions for childhood cancer survivors: Systematic review and meta-analysis of randomized control trials.

PURPOSE: This study was aimed to review and analyze the evidence of the psychosocial interventions for survivors of childhood cancer. METHODS: Electronic databases (PubMed, Embase, Medline, Web of Science, Science Direct, and Scopus) and manuel search were performed for psychosocial randomised controlled trials (RCTs) conducted with survivors who were diagnosed under the age of 18 and have completed treatment. Meta-analyses were performed to evaluate the effects of interventions on psychosocial health outcomes. The trials were published in English between 1 January 2000 to 30 June 2022 were included. Extracted data were analyzed using Review Manager 5.4. RESULTS: Ten trials conducted with 955 childhood cancer survivors were included in the systematic review. Meta-analysis of six RCTs showed no difference in the general quality of life (SMD, 0.07; 95% CI: [-0.09 to 0.23], I2 0%, (p > 0.05)) and three RCTs showed no difference in the physical activity self-efficacy (SMD, 0.12; 95% CI: [-0.35 to 0.58], I2 75%, (p > 0.05)) between intervention and control group. Interventions longer than 24 weeks (including follow-up) were effective in the quality of life and physical activity self-efficacy of the survivors. The overall quality of the evidence was low due to overall low risk of bias for only half of the studies (50%). CONCLUSIONS: Psychosocial interventions were not effective on quality of life and physical activity self-efficacy of childhood cancer survivors, however, long-term interventions provided improvement in these outcomes. REGISTRATION: The protocol for the meta-analysis was registered at PROSPERO (CRD42022375053/22 Nov 2022).

The impact of caregiver burden on quality of life in family caregivers of patients with advanced cancer: a moderated mediation analysis of the role of psychological distress and family resilience.

BACKGROUND: The caregiver burden frequently experienced by family members tending to advanced cancer patients significantly impacts their psychological well-being and quality of life (QoL). Although family resilience might function as a mitigating factor in this relationship, its specific role remains to be elucidated. This study aims to probe the mediating effect of psychological distress on the relationship between caregiver burden and QoL, as well as the moderating effect of family resilience. METHODS: A cross-sectional study was conducted between June 2020 and March 2021 in five tertiary hospitals in China. Data were collected on caregiver burden, family resilience, psychological distress (including anxiety and depression), and QoL. Moderated mediation analysis was performed. RESULTS: Data analysis included 290 caregivers. It confirmed the mediating role of psychological distress in the caregiver burden-QoL relationship (P < 0.001). Both overall family resilience and the specific dimension of family communication and problem-solving (FCPS) demonstrated significant moderating effects on the "psychological distress/anxiety-QoL" paths (P < 0.05). The utilization of social and economic resources (USER) significantly moderated the association between depression and QoL (P < 0.05). CONCLUSIONS: The study corroborates psychological distress's mediation between caregiver burden and QoL and family resilience's moderation between psychological distress and QoL. It underscores the need for minimizing psychological distress and bolstering family resilience among caregivers of advanced cancer patients. Accordingly, interventions should be tailored, inclusive of psychological assistance and promotion of family resilience, particularly focusing on FCPS and USER, to augment the caregivers' well-being and QoL.

Psychological adjustment to death anxiety: a qualitative study of Chinese patients with advanced cancer.

OBJECTIVES: Death anxiety (DA) refers to the negative emotions experienced when a person reflects on the inevitability of their own death, which is common among patients with cancer. It is crucial to understand the causes, coping styles and adjustment processes related to DA. The purpose of this qualitative study is to explore the adaptation process and outcome of patients with advanced cancer with DA and to provide evidence-based support for the development of targeted intervention measures to improve the mental health of such patients. DESIGN: This cross-sectional qualitative study sampled patients with advanced cancer (n=20). Grounded theory procedures were used to analyse transcripts and a theoretical model generated. SETTING: All interviewees in this study were from a tertiary oncology hospital in Hunan Province, China. The data analysis followed the constructive grounded theory method, involving constant comparison and memo writing. PARTICIPANTS: A purposive and theoretical sampling approach was used to recruit 20 patients with advanced cancer with diverse characteristics. RESULTS: A total of 20 participants were included in the study. Four stages of DA in patients with advanced cancer were extracted from the interview data: (1) death reminder and prominence; (2) perception and association; (3) defence and control; (4) transformation and Acceptance. CONCLUSIONS: This study highlights the psychological status and coping strategies of dynamic nature of patients with advanced cancer when confronted with negative emotions associated with death. It emphasises the importance of timely identification of DA in psychological nursing for patients with advanced cancer and the need for targeted psychological interventions based on their specific psychological processes. IMPLICATIONS: Knowing interventions that aim to promote the integration of internal and external resources, enhance self-esteem and facilitate a calm and accepting attitude towards death could ultimately reduce the overall DA of patients with advanced cancer.

Decision-making and autonomy among participants in early-phase cancer immunotherapy trials: a qualitative study.

BACKGROUND: Participants considering early-phase cancer clinical trials (CTs) need to understand the unique risks and benefits prior to providing informed consent. This qualitative study explored the factors that influence patients' decisions about participating in early-phase cancer immunotherapy CTs through the ethical lens of relational autonomy. METHODS: Using an interpretive descriptive design, interviews were conducted with 21 adult patients with advanced cancer who had enrolled in an early-phase CT. Data was analyzed using relational autonomy ethical theory and constant comparative analysis. RESULTS: The extent to which participants perceived themselves as having a choice to participate in early-phase cancer immunotherapy CTs was a central construct. Perceptions of choice varied according to whether participants characterized their experience as an act of desperation or as an opportunity to receive a novel treatment. Intersecting psychosocial and structural factors influenced participants' decision making about participating in early-phase cancer immunotherapy trials. These relational factors included: (1) being provided with hope; (2) having trust; (3) having the ability to withdraw; and (4) timing constraints. CONCLUSIONS: Findings highlight the continuum of perceived choice that exists among patients with cancer when considering participation in early-phase cancer immunotherapy CTs. All participants were interpreted as exhibiting some degree of relational autonomy within the psychosocial and structural context of early-phase CT decision making. This study offers insights into the intersection of cancer care delivery, personal beliefs and values, and established CT processes and structures that can inform future practices and policies associated with early-phase cancer immunotherapy CTs to better support patients in making informed decisions.

Adapting an Adolescent and Young Adult Program Housed in a Quaternary Cancer Centre to a Regional Cancer Centre: Creating Equitable Access to Developmentally Tailored Support.

Adolescents and young adults (AYAs) with cancer, representing those between 15 and 39 years of age, face distinctive challenges balancing their life stage with the physical, emotional, and social impacts of a cancer diagnosis. These challenges include fertility concerns, disruptions to educational and occupational pursuits, issues related to body image and sexual health, and the need for age-appropriate psychosocial support within their communities. The Princess Margaret Cancer Centre (PM), a quaternary care center, established a specialized AYA program in 2014, offering holistic and developmentally tailored psychosocial support and currently, efforts are underway to expand this to other regions in the province to address the need for equitable access. The establishment process involves securing funding, conducting an environmental scan, identifying service gaps, developing clinical pathways, and implementing AYA supportive care. An accessible AYA program should also consider social determinants of health, social location, intersectionality, and an interdisciplinary health approach in understanding health inequities in AYA oncology care. This paper describes the processes implemented and challenges faced in creating a community-based AYA program beyond major resource-rich cities and efforts to address intersectionality.

Perspectives on Ease of Use and Value of a Self-Monitoring Application to Support Physical Activity Maintenance among Individuals Living with and beyond Cancer.

BACKGROUND: Physical activity (PA) can improve the physical and psychosocial health of individuals with cancer, yet PA levels remain low. Technology may address PA maintenance barriers in oncology, though the intervention effectiveness to date remains mixed. Qualitative research can reveal the nuances of using technology-based PA maintenance tools. The present study aimed to understand the perspectives of individuals with cancer on using an app to support PA maintenance. METHODS: Individuals were interviewed after using a self-monitoring app for 24 weeks, asking about their app use, ease of use, and perceived value for supporting PA. Analyses were guided by an interpretive description. RESULTS: Eighteen individuals were interviewed. The participants were 37-75 years old; lived in seven Canadian provinces/territories; identified as White, South Asian, or Indigenous; and had eight different cancers. Four themes were developed: some did not need the app to stay physically active, some valued the app for helping them maintain their PA, the user experience ranged from intuitive to confusing, and the time burden of app use ranged from acceptable to overwhelming. CONCLUSIONS: The participants provided insights on using a self-monitoring app to improve PA maintenance in oncology. Work is needed to capture additional perspectives and apply findings to the development of technology-based PA maintenance tools.

Comparative study of oncology patients' quality of life.

BACKGROUND: A cancer diagnosis has a significant impact on a person's life, both physically and emotionally. However, the oncology patients' QoL (QoL) at different stages of the disease has been under investigated. AIM: To assess and compare the QoL in three groups of oncology patients. METHODS: A comparative study was carried out in an outpatient care service at a public hospital in the state of São Paulo. Data collection involved the use of the Palliative Performance Scale and the McGill QoL Questionnaire. RESULTS: Most participants were women, Catholic and living with a partner. The Palliative Performance Scale revealed a predominance of stable patients (score: ≥70 points). Overall, palliative care patients had lower QoL scores compared to the other groups (p<0.01). CONCLUSION: QoL was worse among palliative care patients. Advanced age, being in palliative care, and have a low-income were negatively associated with a patient's QoL.

Characteristics and influencing factors of demoralization in patients with lung cancer: A latent class analysis.

OBJECTIVE: Demoralization has garnered increasing attention in recent years as a significant psychological distress. This study aims to identify latent classes of demoralization in lung cancer patients using Latent Class Analysis (LCA) from a person-centered perspective and to explore the factors influencing the latent classes of demoralization. METHODS: A cross-sectional study using convenience sampling was conducted among 567 lung cancer patients in three tertiary hospitals in China. LCA was employed to classify heterogeneous classes of demoralization. Multinomial logistic regression analyses were performed to explore the associations between demographic and clinical characteristics, as well as physical symptoms, resilience, family function, and coping strategies, with class membership in the identified heterogeneous subgroups of lung cancer patients. RESULTS: Three latent classes of demoralization were identified: the high demoralization group (Class 1, 14.8%), the moderate demoralization-distress and helplessness group (Class 2, 37.2%), and the low demoralization group (Class 3, 48.0%). In comparison to Class 3, lung cancer patients with hypertension, higher core symptom burden, poorer resilience, dysfunctional family dynamics, and resignation coping were more likely to belong to Class 1 and Class 2. CONCLUSIONS: The demoralization patterns in lung cancer patients were varied. Targeted intervention should be developed based on the characteristics of each class, and timely attention should be paid to high-risk patients.