Exploring the perspective of adolescent childhood cancer survivors on follow-up care and their concerns regarding the transition process-A qualitative content analysis.

PURPOSE: In Germany, children diagnosed with cancer survive their initial disease in more than 80%, and the majority will become long-term survivors. Around the age of 18, survivors are transferred to adult healthcare. The transition can be a critical period in the process of care at which many childhood cancer survivors discontinue to participate in regular follow-up care. Hence, the objective of the paper was to explore (a) survivors' attitudes towards pediatric follow-up care and (b) their concerns regarding the transition process to draw conclusions for optimizing pediatric care and transition processes. METHODS: We conducted semi-structured interviews with 21 adolescent childhood cancer survivors between the ages of 14 and 20. The survivors were recruited via a pediatric oncology department of a university hospital in Germany. Based on the principles of qualitative content analysis, a deductive-inductive method according to Kuckartz was applied. RESULTS: Based on the interview guide and derived from the exploratory research questions, two key categories were generated: (a) Survivors' attitudes towards pediatric follow-up care, which encompasses all formal and emotional aspects of survivors regarding follow-up care, and (b) their concerns regarding transition from pediatric to adult healthcare, where hindering and facilitating factors for a successful transition occur. Our results show high satisfaction among survivors with follow-up care. Nevertheless, they wish to be more integrated into processes and the organization of their follow-up care. Most adolescent survivors do not feel ready for transition. CONCLUSION: The integration of survivors into the organization processes and routines, and the promotion of emotional detachment from pediatric health care professionals (HCPs) are important to reduce concerns and uncertainties of adolescent survivors regarding the transition process and to promote subjective readiness for transition. To gain confidence in the adult healthcare, it is crucial to provide tailored education depending on individual requirements and needs and to build trusting relationships between survivors and adult HCPs.

Effect of MDMA-assisted therapy on mood and anxiety symptoms in advanced-stage cancer (EMMAC): study protocol for a double-blind, randomised controlled trial.

BACKGROUND: Symptoms of anxiety and depression are common in patients with terminal illness and multiple challenges exist with timely and effective care in this population. Several centres have reported that one dose of the serotonergic psychedelic psilocybin, combined with therapeutic support, improves these symptoms for up to 6 months in this patient group. Drawing upon related therapeutic mechanisms, 3,4-methylenedioxymethamphetamine (MDMA)-assisted therapy may have the potential to achieve similar, positive mental health outcomes in this group. Preliminary evidence also supports the tolerability of MDMA-assisted therapy for anxiety and depression in advanced-stage cancer. METHODS: Up to 32 participants with advanced-stage cancer and associated depression and anxiety will be randomised in a 1:1 ratio into one of two blinded parallel treatment arms. The intervention group will receive 120 mg (+ 60 mg optional supplemental dose) MDMA-assisted therapy. The psychoactive control group will receive 20 mg oral (+ 10 mg optional supplemental dose) methylphenidate-assisted therapy. For each medication-assisted therapy session, participants will undergo two 90-min therapeutic support sessions in the week preceding, and one 90-min support session the day after the experimental session. A battery of measures (mood, anxiety, quality of life, mystical experience, spiritual wellbeing, attitudes towards death, personality traits, holistic health and wellbeing, connectedness, demoralisation, expectations, qualitative data and safety measures) will be assessed at baseline and through to the end of the protocol. Participants will be followed up until either 12 months post-randomisation or death, whichever occurs first. DISCUSSION: This study will examine the effect of MDMA-assisted therapy on symptoms of anxiety and depression in advanced-stage cancer. Potential therapeutic implications include establishing the safety and effectiveness of a novel treatment that may relieve mental suffering in patients with life-threatening illness. TRIAL REGISTRATION: Trial registered on Australian New Zealand Clinical Trials Registry. REGISTRATION NUMBER: ACTRN12619001334190p. Date registered: 30/09/2019. URL: https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=378153&showOriginal=true&isReview=true.

A Phenomenological Qualitative Exploration of Mind-Body Therapy Use and Effectiveness Among Young, Middle, and Older Adult Cancer Survivors.

BACKGROUND: Having been diagnosed with and treated for cancer can have negative psychosocial repercussions that may differ across the lifespan. Mind-body therapies (MBTs), such as tai-chi/qigong (TCQ) or mindfulness-based cancer recovery (MBCR), have shown promise in decreasing negative psychosocial outcomes in cancer survivors, but few studies have explored potential differences in MBT use and effectiveness across age groups. METHODS: A descriptive phenomenological qualitative design was used. Participants included young (18-39), middle (40-64), and older (65+) adult cancer survivors who were diagnosed with any type of cancer and had participated in Mindfulness-Based Cancer Recovery (MBCR) or Tai Chi/Qigong (TCQ) MBTs. Semi-structured qualitative interviews explored participants' experiences in MBTs and these were analyzed using descriptive phenomenological analysis. RESULTS: Among the interviews (n = 18), young (n = 6), middle-aged (n = 8), and older (n = 4) adults participated. 5 themes emerged: influences in joining the program, unique lifestyles, positive class experiences, use of media, and program impacts. Though all age groups benefitted from MBT participation, variations between age groups with respect to the benefits received and motivations for joining the program were observed. DISCUSSION: MBTs had beneficial physical and mental health effects on survivors of all age groups. These benefits were particularly connected to the ongoing life stresses common to each age cohort, such as relief from work and family roles for young adults or support during retirement transition for older adults. Hence, access to MBT programs may be beneficial as part of the survivorship plan for patients and the recruitment strategies or content can be adapted by MBT providers to better target and support age-specific groups. More research is required with a larger sample.

Asking those who know their needs best: A framework for active engagement and involvement of childhood cancer survivors and parents in the process of psychosocial research-A workshop report.

BACKGROUND: Patient and public involvement and engagement (PPIE) in healthcare research is crucial for effectively addressing patients' needs and setting appropriate research priorities. However, there is a lack of awareness and adequate methods for practicing PPIE, especially for vulnerable groups like childhood cancer survivors. AIMS: This project aimed to develop and evaluate engagement methods to actively involve pediatric oncological patients, survivors, and their caregivers in developing relevant research questions and practical study designs. METHODS AND RESULTS: An interdisciplinary working group recruited n = 16 childhood cancer survivors and their caregivers to work through the entire process of developing a research question and a practicable study design. A systematic literature review was conducted to gather adequate PPIE methods which were then applied and evaluated in a series of three workshop modules, each lasting 1.5 days. The applied methods were continuously evaluated, while a monitoring group oversaw the project and continuously developed and adapted additional methods. The participants rated the different methods with varying scores. Over the workshop series, the participants successfully developed a research question, devised an intervention, and designed a study to evaluate their project. They also reported increased expertise in PPIE and research knowledge compared to the baseline. The project resulted in a practical toolbox for future research, encompassing the final workshop structure, evaluated methods and materials, guiding principles, and general recommendations. CONCLUSION: These findings demonstrate that with a diverse set of effective methods and flexible support, actively involving patients, survivors, and caregivers can uncover patients' unmet disease-related needs and generate practical solutions apt for scientific evaluation. The resulting toolbox, filled with evaluated and adaptable methods (workbook, Supplement 1 and 2), equips future scientists with the necessary resources to successfully perform PPIE in the development of health care research projects that effectively integrate patients' perspectives and address actual cancer-related needs. This integration of PPIE practices has the potential to enhance the quality and relevance of health research and care, as well as to increase patient empowerment leading to sustainable improvements in patients' quality of life.

"It gave me a sense of achievement and a sense of purpose"-a qualitative study of patient experiences of a virtually supervised exercise program for adults with advanced cancer and cachexia.

People with advanced cancer and cachexia experience significant body weight loss, adversely impacting physical function and quality of life (QOL). Effective, evidence-based treatments for cancer cachexia are lacking, leaving patients with unmet needs. Exercise holds promise to improve patient QOL. However, information on patients' experiences of exercise, including their ability to cope with structured exercise, is limited. PURPOSE: To explore patient experiences completing a structured, supervised exercise program for people with cachexia due to advanced cancer. METHODS: Semi-structured interviews were conducted with participants enrolled in a phase II feasibility, randomized controlled trial to explore their experiences of an 8-week virtually supervised exercise program delivered via videoconference technology. Interviews were analysed using reflexive thematic analysis. RESULTS: Seventeen participants completed interviews (female n = 9, 53%). Main interview themes included the following: (1) Deciding to exercise involves balancing concerns and expectations, (2) the exercise program is a positive experience, and (3) moving forward after the exercise program. While some participants initially held doubts about their physical capabilities and exercise safety, most wanted to exercise to enhance their wellbeing. Participants described the exercise program as a positive experience, offering diverse benefits. Some would have preferred in-person exercise, but all agreed the virtual format increased convenience. Participants emphasized the need to recommend the program to others in similar circumstances. They underscored the necessity and desire for ongoing support to sustain their new exercise habits. CONCLUSION: Based on patient experiences, virtually supervised exercise programming appears to be feasible and meaningful to people with advanced cancer and cachexia.

It provides families with other avenues for treatment when there are no other options Surgeons' perspectives of being part of a precision medicine trial for poor prognosis paediatric cancer patients: A short report.

OBJECTIVE: Precision medicine is transforming cancer treatment, yet the perspectives of surgeons who often play a critical role in the delivery of precision medicine remain understudied. METHODS: We conducted semi-structured interviews with 13 surgeons involved in a precision medicine trial for children with poor prognosis cancer. We explored knowledge of genetics, confidence with somatic and germline results, ratings of benefit to stakeholders and willingness to undertake surgical procedures. RESULTS: Surgeons generally had positive attitudes towards precision medicine but expressed concerns about families' unrealistic expectations, mixed opinions on the benefits and the use of research-only biopsies. Most surgeons rated their genetics knowledge as 'good' (69%) and felt 'very confident' in identifying genetic specialists (66%), but 'not confident' (66.6%) in making treatment recommendations. Surgeons' willingness to undertake a procedure was influenced by potential patient benefit. CONCLUSIONS: Our findings support the need for more workforce and training support for surgeons to fully engage with precision medicine.

Survey of awareness and beliefs about cancer (ABC) in Tehran Province, Iran.

INTRODUCTION: Knowledge, attitudes, and practices are essential measures for planning and evaluating cancer control programs. Little is known about these in Iran. METHODS: We conducted a population-based interview survey of adults aged 30-70 using the Farsi version of the Awareness and Beliefs about Cancer questionnaire in the capital province of Tehran, Iran, 2019. We calculated weighted estimates of levels of cancer knowledge, attitudes, and practices to allow for different selection probabilities and nonresponse. We used multivariate logistic regression to understand demographic factors associated with bowel, cervix, and breast screening practices. RESULTS: We interviewed 736 men and 744 women. The mean number of recalled cancer warning signs was less than one; 57.7% could not recall any cancer warning signs. Participants recognized 5.6 out of 11 early cancer warning signs and 8.8 of 13 cancer risk factors. Most (82.7%) did not know that HPV infection was a cancer risk factor. Approximately, half had negative attitudes towards cancer treatment, but over 80% had positive attitudes towards the effectiveness of screening for improving survival. Colorectal, breast, and cervical screening rates were 24%, 42%, and 49%, respectively. Higher socioeconomic status increased the odds of taking up screening for cancer. Women aged 60-70 were less likely to report taking up breast and cervical screening than younger women. DISCUSSION: The Iranian population has poor awareness and negative attitudes about cancer, and participation in screening programs is low. Public awareness and early detection of cancer should be promoted in Iran.

Tailored Self-Management App to Support Older Adults With Cancer and Multimorbidity: Development and Usability Testing.

BACKGROUND: Globally, cancer predominates in adults aged older than 60 years, and 70% of older adults have ≥1 chronic condition. Cancer self-management interventions can improve symptom management and confidence, but few interventions target the complex needs of older adults with cancer and multimorbidity. Despite growing evidence of digital health tools in cancer care, there is a paucity of theoretically grounded digital self-management supports for older adults. Many apps for older adults have not been co-designed with older adults to ensure that they are tailored to their specific needs, which would increase usability and uptake. OBJECTIVE: We aim to report on the user evaluations of a self- and symptom-management app to support older adults living with cancer and multimorbidity. METHODS: This study used Grey's self-management framework, a design thinking approach, and involved older adults with lived experiences of cancer to design a medium-fidelity app prototype. Older adults with cancer or caregivers were recruited through community organizations or support groups to participate in co-designing or evaluations of the app. Data from interviews were iteratively integrated into the design process and analyzed using descriptive statistics and thematic analyses. RESULTS: In total, 15 older adults and 3 caregivers (n=18) participated in this study: 10 participated (8 older adults and 2 caregivers) in the design of the low-fidelity prototype, and 10 evaluated (9 older adults and 1 caregiver) the medium-fidelity prototype (2 older adults participated in both phases). Participants emphasized the importance of tracking functions to make sense of information across physical symptoms and psychosocial aspects; a clear display; and the organization of notes and reminders to communicate with care providers. Participants also emphasized the importance of medication initiation or cessation reminders to mitigate concerns related to polypharmacy. CONCLUSIONS: This app has the potential to support the complex health care needs of older adults with cancer, creating a "home base" for symptom management and support. The findings from this study will position the researchers to conduct feasibility testing and real-world implementation.

Parent and oncologist perspectives on prognostic disclosure in advanced childhood cancer: communication pearls and pitfalls.

PURPOSE: For children with advanced cancer and their families, communication about prognosis is critical. Unfortunately, data demonstrate that prognostic communication occurs infrequently and inconsistently across advancing illness. Prior to developing an intervention to improve prognostic communication, we aimed to (1) characterize parent and oncologist perspectives on "best" approaches for prognostic communication, and (2) explore similarities and differences between parent and oncologist perspectives. METHODS: Children with poor-prognosis solid tumors, their parents, and oncologists were followed prospectively for 24 months or until death. Matched semi-structured interviews were conducted with parents and oncologists 0-7 days after medical encounters at timepoints of disease progression or relapse. Reflexive thematic analysis was conducted to describe parent and oncologist impressions of communication quality. RESULTS: A total of 68 interviews were conducted following serial disease reevaluation encounters involving 13 parents and five oncologists. Nine main themes were identified as "best" approaches: (1) speaking with honesty and clarity, (2) leaving room for hope, (3) leaning into a long-standing relationship, (4) personalizing language, (5) empowering the patient and family, (6) collaborating with the multidisciplinary team, (7) providing anticipatory guidance, (8) setting the scene, and (9) creating a therapeutic space. Parents and oncologists generally agreed on themes related to helpful communication approaches, while parents more explicitly described communication pitfalls. CONCLUSION: Parents and oncologists described clear recommendations for helpful communication strategies and pitfalls to avoid during difficult prognostic disclosure. Future work should integrate patient perspectives in the design and testing of an intervention to improve prognostic communication in advanced childhood cancer.

A chain mediation model reveals the association between family sense of coherence and quality of life in caregivers of advanced cancer patients.

Caregivers of advanced cancer patients face challenges impacting their quality of life (QoL). While evidence suggests that family sense of coherence (FSOC) can enhance individual psychological well-being and reduce distress symptoms, the precise mechanism through which FSOC improves caregivers' QoL remains unclear. This study aimed to explore the relationships among FSOC, psychological resilience, psychological distress, and QoL in primary caregivers of advanced cancer patients. A cross-sectional observational study was undertaken from June 2020 to March 2021 across five tertiary hospitals in China. Instruments included a general characteristic questionnaire, the Family Sense of Coherence Scale, the Patient Health Questionnaire-4, the 10-item Connor-Davidson Resilience Scale, and the 8-item SF-8 health survey. Pearson's correlation and chain mediation analyses were performed using IBM SPSS (version 21) and PROCESS macro (version 3.4). Out of 290 valid questionnaires, results demonstrated that FSOC directly and positively influences caregivers' QoL. Psychological distress partially mediated the FSOC-QoL association, with paths "FSOC-psychological distress-QoL" and "FSOC-psychological resilience-psychological distress-QoL" contributing 43.08% and 6.72% of the total effect, respectively. Furthermore, this study distinguished physical and mental aspects of QoL, confirming both conform to the chain mediation model. FSOC impacts caregivers' QoL directly and indirectly through the mediation of psychological distress and the chain mediation effect of "psychological resilience-psychological distress". These insights enhance our understanding of the complex interplay between FSOC and QoL, underscoring the potential benefits of bolstering FSOC to strengthen caregiver resilience, alleviate distress, and ultimately elevate their QoL.

Comparison of dmft and behavior rating scores between children with systemic disease and healthy children at the first dental visit.

PURPOSE: To evaluate and compare oral health and behavior scores at the first dental visit and dental treatment need using general anesthesia/sedation (GA/S) of children with systemic diseases (SD) and healthy children. METHODS: Data were obtained from healthy children (n = 87) and children with SD (n = 79), aged 4 to 6 years, presenting to a hospital dental clinic for a first dental examination. The total number of decayed, missing and filled teeth (dmft), dental behavior score using Frankl Scale, and dental treatment need using GA/S were recorded. Chi-square / Fisher's exact test and Mann-Whitney U tests were used for statistical analyses. RESULTS: The patients with SD were diagnosed with cardiac disease (61%), renal disease (9%), and pediatric cancers (30%). The median dmft values of the SD group (3.00) were significantly lower than those of healthy children (5.00) (p = 0.02) and healthy children exhibited significantly more positive behavior (90.8%) than children with SD (73.4%) (p = 0.002). The number of patients needing GA/S for dental treatment did not differ significantly between the two groups (p = 0.185). There was no relationship between dental treatment need with GA/S and dental behavior scores of the patients (p = 0.05). A statistically significant relationship was found between the patients' dmft scores and the need for dental treatment using GA/S; and the cut-off value was found to be dmft > 4 for the overall comparisons. CONCLUSION: The presence of chronic disease in children appeared to affect the cooperation negatively at the first dental visit compared to healthy controls, however, it did not affect the oral health negatively. Having a negative behavior score or SD did not necessitate the use of GA/S for dental treatment.

Professionals' perspectives on caring for cancer patients with pre-existing severe mental disorders.

INTRODUCTION: Cancer trajectories among patients with pre-existing severe mental disorders (SMD) are challenging and these pateints' prognosis is poor. This study aimed at exploring barriers in cancer trajectories among patients with pre-existing SMD as experienced by Danish healthcare professionals. METHODS: Semi-structured interviews were conducted with healthcare professionals who were sampled by purposive sampling. Data were analysed using inductive qualitative content analysis. RESULTS: The participants wanted to optimise treatment, but several barriers were reported, including lack of knowledge of supportive social systems. Oncological participants experienced a lack of knowledge of psychiatric disorders and a reluctance to deal with patients with SMD among some colleagues. Furthermore, participants expressed a lack of time and continuity. CONCLUSIONS: Concerns about how to create optimal cancer care trajectories for people with pre-existing SMD exist among healthcare professionals. Even so, stigmatisation, lack of knowledge and system barriers such as a lack of time and continuity must be addressed to optimise care for this population. FUNDING: This study was funded by The Danish Cancer Society (R283-A16499). TRIAL REGISTRATION: This study is registered in the internal register of research projects of the Central Denmark Region (R. no. 1-16-02-227-21).

A caregivers' perspective on social reintegration and stigma of childhood cancer survivors in Kenya.

OBJECTIVES: Childhood cancer survivors' social reintegration may be hampered in low and middle-income countries. The nature and extent of social challenges and prejudices that survivors encounter in such settings are largely unknown. This study explores caregivers' perspectives on social reintegration and stigmatization of Kenyan childhood cancer survivors. METHODS: Caretakers of childhood cancer survivors (<18 years) were interviewed using mixed-methods questionnaires during home or clinic visits between 2021 and 2022. Stigma was assessed with an adjusted Social Impact Scale and risk factors were investigated. RESULTS: Caretakers of 54 survivors (median age 11 years) were interviewed. Families' income (93%) decreased since start of treatment. Caretakers (44%) often lost their jobs. Financial struggles (88%) were a burden that provoked conflicts within communities (31%). School fees for siblings became unaffordable (52%). Families received negative responses (26%) and were left or avoided (13%) by community members after cancer disclosure. Survivors and families were discriminated against because the child was perceived fragile, and cancer was considered fatal, contagious, or witchcraft. Survivors repeated school levels (58%) and were excluded from school activities (19%) or bullied (13%). Performance limitations of daily activities (p = 0.019), male sex (p = 0.032), solid tumors (p = 0.056) and a short time since treatment completion (p = 0.047) were associated with increased stigma. Caretakers recommended educational programs in schools and communities to raise awareness about cancer treatment and curability. CONCLUSIONS: Childhood cancer survivors and their families experienced difficulties with re-entry and stigmatization in society. Increasing cancer and survivorship awareness in schools and communities should facilitate social reintegration and prevent stigmatization.

Effectiveness of Karate in Oncology Patients: A Quasi-Experimental Study.

Cancer is a global health concern and affects patient quality of life, anxiety, depression, and sleep. Physical exercise shows promise in alleviating these effects. Karate is a holistic intervention that could be used to improve several outcomes related to cancer disease, but to date its effect remains unexplored. This quasi-experimental pre-/poststudy evaluated the effects of a 6-month karate program conducted twice a week for 60 minutes each session on quality of life, anxiety, depression, sleep quality, and psychosomatic symptoms in 22 patients with posttherapy oncology. Significant improvements in quality of life (P = .006), anxiety (P < .001), depression (P < .001), and sleep quality (P = .011) were observed. Multidimensional psychophysical evaluation showed significant reductions in symptoms (P < .05). High participant satisfaction was reported across all dimensions. This pilot study shows the potential benefits in oncology patients, but more research is necessary to confirm these findings.

Patient experiences and needs in cancer care- results from a nationwide cross-sectional study in Germany.

BACKGROUND: Patient-centredness has become a central quality indicator for oncology care. Elements include shared decision-making, patient navigation and integration of psychosocial care, which impact patient-reported and clinical outcomes. Despite efforts to promote patient-centred care in Germany in recent decades, implementation remains fragmented. Further, research on patient experiences with cancer care and its determinants is limited. Therefore, this study examines which patient- and facility-specific factors are associated with patient-centred quality care delivery. METHODS: A cross-sectional study was conducted among 1,121 cancer patients in acute treatment, rehabilitation, and aftercare for different cancer entities across Germany. A participatory developed questionnaire was used. Outcome measures were the quality of physician-patient interaction and provision of psychosocial care during acute care. Predictors comprised patient-specific characteristics and treatment facility-specific factors. Multiple linear regression and multivariate binary logistic regression analyses were performed. In addition, a content analysis of open-ended comments on the patients' overall cancer care needs was applied. RESULTS: Multiple linear regression analysis showed recent diagnosis (ß=-0.12, p = < 0.001), being male (ß=-0.11, p = 0.003), and having a preference for passive decision-making (ß=-0.10, p = 0.001) to be significantly associated with higher interaction quality, but not age, education and health insurance type. An overall low impact of patient characteristics on interaction quality was revealed (adj. R2 = 0.03). Binary logistic regression analysis demonstrated the availability of central contact persons (OR = 3.10, p < 0.001) followed by recent diagnosis (p < 0.001), having breast cancer (p < 0.001) and being female (OR = 1.68, p < 0.05) to significantly predict offering psycho-oncological counselling to patients in acute care facilities. The availability of peer support visiting services (OR = 7.17, p < 0.001) and central contact persons (OR = 1.87, p < 0.001) in the care facility, breast cancer diagnosis (p < 0.001) and a higher level of education (p < 0.05) significantly increased the odds of patients receiving information about peer support in the treatment facility. Despite relatively satisfactory quality of physician-patient interactions in cancer care (M = 3.5 (± 1.1)), many patients expressed that better patient-centred communication and coordinated, comprehensive cancer care are needed. CONCLUSION: The findings reflect effective developments and improvements in cancer care and suggest that patients' social characteristics are less decisive for delivering patient-centred quality care than systemic factors surrounding the care facilities. They can serve to inform oncology care in Germany.

SupporTive Care At Home Research (STAHR) for patients with advanced cancer: Protocol for a cluster non-randomized controlled trial.

Advancements in the treatment and management of patients with cancer have extended their survival period. To honor such patients' desire to live in their own homes, home-based supportive care programs have become an important medical practice. This study aims to investigate the effects of a multidimensional and integrated home-based supportive care program on patients with advanced cancer. SupporTive Care At Home Research is a cluster non-randomized controlled trial for patients with advanced cancer. This study tests the effects of the home-based supportive care program we developed versus standard oncology care. The home-based supportive care program is based on a specialized home-based medical team approach that includes (1) initial assessment and education for patients and their family caregivers, (2) home visits by nurses, (3) biweekly regular check-ups/evaluation and management, (4) telephone communication via a daytime access line, and (5) monthly multidisciplinary team meetings. The primary outcome measure is unplanned hospitalization within 6 months following enrollment. Healthcare service use; quality of life; pain and symptom control; emotional status; satisfaction with services; end-of-life care; advance planning; family caregivers' quality of life, care burden, and preparedness for caregiving; and medical expenses will be surveyed. We plan to recruit a total of 396 patients with advanced cancer from six institutions. Patients recruited from three institutions will constitute the intervention group, whereas those recruited from the other three institutions will comprise the control group.

"Current", "heated rods", and "hot vapour": why patients refuse radiotherapy as a treatment modality for cancer in northern Sri Lanka.

PURPOSE: Significant proportions of patients either refuse or discontinue radiotherapy, even in the curative setting, leading to poor clinical outcomes. This study explores patient perceptions that underlie decisions to refuse/discontinue radiotherapy at a cancer care facility in northern Sri Lanka. METHODS: An exploratory descriptive qualitative study was carried out among 14 purposively selected patients with cancer who refused/discontinued radiotherapy. In-depth semi-structured interviews were transcribed in Tamil, translated into English, coded, and thematically analyzed. RESULTS: All participants referred to radiotherapy as "current" with several understanding the procedure to involve electricity, heat, or hot vapour. Many pointed to gaps in information provided by healthcare providers, who were perceived to focus on side effects without explaining the procedure. In the absence of these crucial details, patients relied on family members and acquaintances for information, often based on second or third-hand accounts of experiences with radiotherapy. Many felt pressured by family to refuse radiation, feared radiation, or felt ashamed to ask questions, while for others COVID-19 was an impediment. All but three participants regretted their decision, claiming they would recommend radiation to patients with cancer, especially when it is offered with curative intent. CONCLUSION: Patients with cancer who refused/discontinued radiation therapy have significant information needs. While human resource deficits need to be addressed in low-resource settings like northern Sri Lanka, providing better supportive cancer care could improve clinical outcomes and save healthcare resources that would otherwise be wasted on patient preparation for radiotherapy.

Monitoring Adolescent and Young Adult Patients With Cancer via a Smart T-Shirt: Prospective, Single-Cohort, Mixed Methods Feasibility Study (OncoSmartShirt Study).

Background: Wearables that measure vital parameters can be potential tools for monitoring patients at home during cancer treatment. One type of wearable is a smart T-shirt with embedded sensors. Initially, smart T-shirts were designed to aid athletes in their performance analyses. Recently however, researchers have been investigating the use of smart T-shirts as supportive tools in health care. In general, the knowledge on the use of wearables for symptom monitoring during cancer treatment is limited, and consensus and awareness about compliance or adherence are lacking. objectives: The aim of this study was to evaluate adherence to and experiences with using a smart T-shirt for the home monitoring of biometric sensor data among adolescent and young adult patients undergoing cancer treatment during a 2-week period. Methods: This study was a prospective, single-cohort, mixed methods feasibility study. The inclusion criteria were patients aged 18 to 39 years and those who were receiving treatment at Copenhagen University Hospital - Rigshospitalet, Denmark. Consenting patients were asked to wear the Chronolife smart T-shirt for a period of 2 weeks. The smart T-shirt had multiple sensors and electrodes, which engendered the following six measurements: electrocardiogram (ECG) measurements, thoracic respiration, abdominal respiration, thoracic impedance, physical activity (steps), and skin temperature. The primary end point was adherence, which was defined as a wear time of >8 hours per day. The patient experience was investigated via individual, semistructured telephone interviews and a paper questionnaire. Results: A total of 10 patients were included. The number of days with wear times of >8 hours during the study period (14 d) varied from 0 to 6 (mean 2 d). Further, 3 patients had a mean wear time of >8 hours during each of their days with data registration. The number of days with any data registration ranged from 0 to 10 (mean 6.4 d). The thematic analysis of interviews pointed to the following three main themes: (1) the smart T-shirt is cool but does not fit patients with cancer, (2) the technology limits the use of the smart T-shirt, and (3) the monitoring of data increases the feeling of safety. Results from the questionnaire showed that the patients generally had confidence in the device. Conclusions: Although the primary end point was not reached, the patients' experiences with using the smart T-shirt resulted in the knowledge that patients acknowledged the need for new technologies that improve supportive cancer care. The patients were positive when asked to wear the smart T-shirt. However, technical and practical challenges in using the device resulted in low adherence. Although wearables might have potential for home monitoring, the present technology is immature for clinical use.

Adult cancer patients' barriers to and satisfaction with care at a National Cancer Hospital in Vietnam.

STUDY OBJECTIVE: This study assessed the overall satisfaction with oncological care, including barriers to care, and identified its associated predictors among adult cancer patients in Vietnam. METHODS: In this cross-sectional study, we enrolled 300 adult cancer patients receiving inpatient care at a large urban oncological hospital between June and July 2022. Multivariable linear regression analyses examined associations between patient experiences and overall satisfaction ratings with cancer care. RESULTS: The mean overall satisfaction with oncological care was 8.82 out of 10, with 98.0% recommending this facility to their friends and family. In an adjusted model, being female (ß = 0.29, 95%CI: 0.04, 0.53), endorsing satisfaction with patient-nurse communication (ß = 0.33, 95%CI: 0.13, 0.53), patient-doctor communication (ß = 0.40, 95%CI: 0.11, 0.70), and psychoeducation about oncological medication management (ß = 0.30, 95%CI: 0.14, 0.45) were positively associated with overall ratings. In contrast, individuals with delays in treatment scheduling reported lower overall satisfaction with oncological care (ß = -0.38, 95%CI: -0.64, -0.13). Patients perceived health system, social/environmental, and individual barriers to care: worries about income loss due to attending treatment (43.3%); fear, depression, anxiety, and distress (36.8%); concerns about affordability of treatment (36.7%) and transportation problems (36.7%); and excessive waiting times for appointments (28.8%). CONCLUSION: This study showed high overall patient satisfaction with cancer care quality. Patient-centered communication strategies and psychoeducation about oncological medication management may be targeted to further enhance the cancer inpatient experience. Raising awareness about treatment options and services, and integrating mental health awareness into oncological care may ameliorate patient distress and facilitate greater satisfaction with oncological treatment processes.