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BACKGROUND: For patients receiving immune checkpoint inhibitors, early detection of immune-related adverse events (irAEs) is critical for one's safety. To this end, a smartphone app (SOFIA) was developed that featured the assessment of electronic patient-reported outcomes (ePROs) focusing on irAEs as well as a set of comprehensive supportive information. Its feasibility and preliminary efficacy were evaluated in a randomized controlled trial (RCT). METHODS: Patients who received immune checkpoint inhibition therapy were randomly assigned to an intervention group (IG) or a control group (CG; care as usual). During the 12-week intervention period, IG patients used SOFIA to report twice weekly ePROs and receive cancer- and immunotherapy-relevant contents. Before a patient's next clinical visit, the physician in charge was given the ePRO reports. The primary objective was to test the feasibility of SOFIA. Furthermore, the preliminary efficacy of SOFIA for health-related quality of life (HRQOL), psychosocial outcomes, and medical data was examined. Clinical outcomes were assessed at baseline (T0), post-intervention (T1), and a 3-month follow-up (T2). RESULTS: Seventy-one patients were randomized to the IG (n = 34) or the CG (n = 37). SOFIA showed high feasibility and acceptance. At T1, patients in the IG reported significantly better HRQOL and role functioning and less depression, distress, and appetite loss. No significant differences were revealed regarding medical data, the utilization of supportive care services, or survival. CONCLUSIONS: SOFIA showed high feasibility and acceptance and improved HRQOL and psychosocial outcomes. These results suggest further evaluation of efficacy in a large-scale confirmatory multicenter RCT.
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Imunoterapia , Aplicativos Móveis , Neoplasias , Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida , Humanos , Masculino , Feminino , Projetos Piloto , Neoplasias/terapia , Neoplasias/imunologia , Pessoa de Meia-Idade , Idoso , Imunoterapia/métodos , Imunoterapia/efeitos adversos , Inibidores de Checkpoint Imunológico/uso terapêutico , Inibidores de Checkpoint Imunológico/efeitos adversos , Estudos de Viabilidade , Telemedicina , Smartphone , AdultoRESUMO
Adolescence and young adulthood are times of growth and change. For adolescents and young adults (AYAs) who are diagnosed with cancer, the demands of illness may compound normal developmental challenges and adversely affect physical, emotional, and social health. Nevertheless, AYAs have a tremendous capacity for psychosocial adaptation and resilience. Informed by the Transactional Model of Stress and Coping, observational studies in AYA oncology suggest consistent individual, social, and existential resources that may promote resilience. To date, few interventions have been designed to examine whether resilience can be taught and whether doing so affects patient-centered outcomes. Findings point to the potential value of multicomponent programs that include various skills-building strategies, such as stress management, mindfulness, gratitude, and positive reappraisal coping, among others. New research directions include the need to evaluate delivery strategies to enhance participant adherence and retention (e.g., eHealth modalities, optimization studies) and to examine program effectiveness in community-based oncology practices (e.g., less resource-rich settings in which most AYAs receive care). Ultimately, this scholarship may inform, refine, and strengthen intervention science in resilience more broadly.
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Atenção Plena , Neoplasias , Resiliência Psicológica , Adulto Jovem , Humanos , Adolescente , Adulto , Neoplasias/terapia , Neoplasias/psicologia , Capacidades de Enfrentamento , EmoçõesRESUMO
BACKGROUND: The Middle East and North Africa (MENA) region is expected to witness a significant increase in the burden of cancer. Contrary to Western literature, the burden of psycho-oncology is yet to be established within the MENA region. This study reviews all available evidence characterizing the psychological burden among patients with cancer across the MENA region. METHODS: We systematically explored the PubMed/MEDLINE, Cochrane/CENTRAL, and Web of Science (WoS) databases for reports on the psychiatric burden among patients with cancer residing within the MENA region from January 2000 until January 2023. Raw proportion were extracted and analyzed using a random-effects model. FINDINGS: Eighty-three studies comprised of 16â 810 participants, representing 14 countries, met our inclusion criteria. Across the MENA region, the prevalence of depression, anxiety, and distress were 44% (95% CI, 39%-50%), 47% (95% CI, 40%-54%), and 43% (95% CI, 30%-56%), respectively. Prevalence of depression was significantly different across countries, with Palestine (73%; 95% CI, 42%-91%) reporting the highest rate while Morocco (23%; 95% CI, 7%-56%) reported the lowest. Similarly, anxiety significantly differed across MENA nations ranging from 64% (95% CI, 3%-99%) in Morocco to 28% (95% CI, 18%-42%) in Tunisia. Rates of depression and anxiety were significantly different across measurement tools but not between Arabic-speaking versus Persian/Farsi-speaking countries. Meta-regression models showed that neither publication year nor age affected the prevalence of both anxiety and depression (Pâ =â .374 and .091 for depression and Pâ =â .627, and .546 for anxiety, respectively). INTERPRETATION: We report an abnormally high rate of psychiatric burden among patients with cancer in the MENA region. Thus, establishing appropriate psycho-oncologic interventions within the MENA region is of utmost importance.
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PURPOSE: Germline testing in pediatric cancer presents opportunities and challenges. Understanding family perspectives, experiences, and preferences will optimize integration into routine care. METHODS: Following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, we searched 4 databases for studies exploring perspectives, experiences, and preferences of parents/caregivers and/or patients regarding germline testing of children with cancer. Qualitative and quantitative data were extracted, organized, and summarized by research question and themes. RESULTS: We identified 2286 unique articles, of which 24 were included. Interest in and uptake of testing was high. Families were motivated by altruism and a desire for inheritance/causation information. Testing barriers included psychological concerns, timing of the testing approach if offered at diagnosis or in a high-risk cancer setting and privacy/discrimination. Testing experiences highlighted challenges yet also positive impacts, with results providing psychological relief and informing proactive decision making. Timing preferences varied; however, allowing time to adjust to a new diagnosis was a common theme. Most wanted to receive as many germline sequencing-related results as possible. CONCLUSION: Findings underscore the importance of integrating germline analyses into pediatric cancer care with flexibility and support for families facing challenges. Where possible, consent should be provided at a time that suits each family's situation with access to information aligning with their needs and preferences. PROSPERO: CRD42023444890.
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Testes Genéticos , Mutação em Linhagem Germinativa , Neoplasias , Pais , Criança , Humanos , Tomada de Decisões , Predisposição Genética para Doença/psicologia , Genômica/métodos , Células Germinativas , Mutação em Linhagem Germinativa/genética , Neoplasias/genética , Neoplasias/psicologia , Neoplasias/diagnóstico , Pais/psicologia , Preferência do Paciente/psicologiaRESUMO
PURPOSE: Germline DNA sequencing is increasingly used within pediatric oncology, yet parental experiences remain underexplored. METHODS: Parents of children undergoing cancer predisposition gene panel sequencing (143 genes) were surveyed before and after disclosure of results. Questionnaires assessed knowledge, expectations, worries, satisfaction, and regret. Next to descriptives, linear mixed models and generalized mixed models were utilized to explore factors associated with knowledge and worries. RESULTS: Out of 325 eligible families, 310 parents (176 mothers and 128 fathers of 188 families) completed all after-consent questionnaires whereas 260 parents (150 mothers and 110 fathers of 181 families) completed all after disclosure questionnaires. Most parents hoped their participation would benefit others, although individual hopes were also common. Sequencing-related worries were common, particularly concerning whether their child would get cancer again, cancer risks for family members and psychosocial implications of testing. Parental satisfaction after disclosure was high and regret scores were low. Lower education was associated with lower knowledge levels, whereas foreign-born parents were at increased risk of experiencing worries. CONCLUSION: Germline sequencing of children with cancer is generally well received by their parents. However, careful genetic counseling is essential to ensure that parents are adequately informed and supported throughout the process.
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BACKGROUND: Regular surveillance imaging is commonly used after curative-intent resection of most solid-organ cancers to enable prompt diagnosis and management of recurrent disease. Given the fear of cancer recurrence, surveillance may lead to distress and anxiety ("scanxiety") but its frequency, severity, and management among cancer survivors are poorly understood. METHODS: A systematic review of the PubMed, Embase, CINAHL, and PsycINFO databases was conducted to evaluate existing literature on anxiety and emotional experiences associated with surveillance after curative-intent cancer surgery as well as interventions aimed at reducing scanxiety. RESULTS: Across the 22 included studies encompassing 8693 patients, reported rates of scanxiety varied significantly, but tended to decrease as time elapsed after surgery. Qualitative studies showed that scanxiety arises from various factors innate to the surveillance experience and is most prevalent in the scan-to-results waiting period. Common risk factors for scanxiety included sociodemographic and cancer-related characteristics, low coping self-efficacy, pre-existing anxiety, and low patient well-being. Conversely, reassurance was a positive aspect of surveillance reported in several studies. Trials evaluating the impact of interventions all focused on modifying the surveillance regimen compared with usual care, but none led to reduced rates of scanxiety. CONCLUSIONS: Although scanxiety is nearly universal across multiple cancer types and patient populations, it is transient and generally limited in severity. Because existing trials evaluating interventions to reduce scanxiety have not identified effective strategies to date, future research is needed to identify interventions aimed at reducing their impact on high-risk individuals.
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BACKGROUND: Continued smoking after a cancer diagnosis can be associated with lower treatment tolerance, poorer outcomes, and reduced quality of life compared to non-smoking cancer patients or to those who have quit. Yet about 60% of patients continue to smoke after being diagnosed and find it difficult to quit. To address this problem, it is necessary to identify current and past smoking patterns (e.g., frequency of use, types of tobacco products) and determine whether there is motivation to quit. Similarly, factors associated with continued smoking should be identified. These data will provide the basis for the development of smoking cessation programs tailored to the needs of cancer patients. METHODS: A questionnaire was distributed to cancer patients older than 18 years in a German Comprehensive Cancer Center. Participating cancer patients were divided into three main groups: 1) patients who stopped smoking before being diagnosed with cancer (Ex-before); 2) patients who stopped smoking after a cancer diagnosis (Ex-after); and 3) patients who currently smoke cigarettes (CS). Sociodemographic, medical, and psychosocial data were collected, as well as smoking patterns and the motivation to quit smoking. RESULTS: About half of patients (51%) who smoked before diagnosis continue to smoke after a cancer diagnosis. Being diagnosed with a tobacco-related cancer type was associated with a decreased probability of continued smoking. Patients with tobacco-related tumors and receiving positive support in burdensome situations were more likely to have a higher cigarette dependence. Of all CS, 59.1% had intention to quit, and 22.7% reported having taken action to quit. The support by a smoking cessation program was considered important. CS were willing to spend up to 100 for support and were open to multiple sessions per week, group sessions, one-on-one sessions and/or online support. CONCLUSION: These findings underscore the importance of educating cancer patients about the consequences of smoking and to provide them with support to quit. Identified risk factors may further help to recognize cancer patients with high risk of continued smoking after diagnosis. TRIAL REGISTRATION: The study was registered at OSF ( https://osf.io/3c9km ) and published as a study protocol at " https://bmjopen.bmj.com/content/13/4/e069570 ".
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Intenção , Motivação , Neoplasias , Abandono do Hábito de Fumar , Fumar , Humanos , Abandono do Hábito de Fumar/psicologia , Masculino , Feminino , Neoplasias/psicologia , Neoplasias/epidemiologia , Pessoa de Meia-Idade , Estudos Transversais , Alemanha/epidemiologia , Idoso , Inquéritos e Questionários , Fumar/psicologia , Fumar/epidemiologia , Adulto , Qualidade de VidaRESUMO
BACKGROUND: Developing cancer in young adulthood is a non-normative life event and associated with adverse physical, social and psychological consequences. High psychological distress is common in AYA cancer patients including anxiety, depression or fear of recurrence. At the same time, it is well known that AYA often report unmet needs for support, particularly in terms of informational exchange and emotional support from peers in order to benefit from shared experiences and enhance self-efficacy. Especially in the AYA group, interactions with other same-aged cancer patients may represent an essential resource in terms of coping with the disease, as family members and friends are often overwhelmed and struggling with helplessness. Currently, there is a lack of professional support services using peer support (e.g. psycho-oncological support, aftercare consultations, social legal counselling) or evaluated peer support interventions in Germany. Our aim is to assess the effectiveness of the Peer2Me intervention for AYAs, in which acute patients (mentees) are accompanied by an AYA survivor (mentor) over a period of three months. METHODS: A prospective Comprehensive Cohort Design with repeated measures will be used to evaluate the effectiveness of Peer2Me for AYA. A sample of 180 patients in active cancer treatment aged 18 to 39 years will be enrolled and randomized to the intervention or control condition (a single AYA-specific consultation). Following mentor training, mentees and mentors are matched by diagnosis, age, and gender. The primary outcome is self-efficacy; secondary outcomes include measures of anxiety, depression, health literacy, life satisfaction and social support life. Outcomes will be measured at baseline before the intervention (t1), immediately after completion of the three-month intervention (t2) and three months after completion the intervention (t3). For the final analyses, we will use an intention-to-treat approach (ITT) and compare patients in the assigned treatment groups. DISCUSSION: Peer2Me might be an important addition to existing professional psychosocial support services for young cancer patients. At the end of the study, a psycho-oncological intervention for young cancer patients undergoing acute treatment should be available, from which both mentors and mentees could benefit. The long-term continuity of Peer2Me should be ensured through collaboration with different partners. TRIAL REGISTRATION: The study was retrospectively registered on February 4, 2022 at clinicaltrials.gov (NCT05336318).
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Neoplasias , Grupo Associado , Apoio Social , Humanos , Adolescente , Adulto Jovem , Neoplasias/psicologia , Neoplasias/terapia , Adulto , Feminino , Masculino , Estudos Prospectivos , Adaptação Psicológica , Sobreviventes de Câncer/psicologia , Qualidade de Vida , Alemanha , Ensaios Clínicos Controlados Aleatórios como AssuntoRESUMO
OBJECTIVE: Patients with advanced gynecologic (GYN) and gastrointestinal (GI) cancers frequently develop peritoneal carcinomatosis (PC), which limits prognosis and diminishes health-related quality of life (HRQoL). Palliative procedures may improve PC symptoms, yet patients and caregivers report feeling unprepared to manage ostomies, catheters, and other complex needs. Our objectives were to (1) assess the feasibility of an efficacy trial of a nurse-led telehealth intervention (BOLSTER) for patients with PC and their caregivers; and (2) assess BOLSTER's acceptability, potential to improve patients' HRQoL and self-efficacy, and potential impact on advance care planning (ACP). METHODS: Pilot feasibility RCT. Recently hospitalized adults with advanced GYN and GI cancers, PC, and a new complex care need and their caregivers were randomized 1:1 to BOLSTER or enhanced discharge planning (EDP). We defined feasibility as a ≥ 50% approach-to-consent ratio and acceptability as ≥70% satisfaction with BOLSTER. We assessed patients' HRQoL and self-efficacy at baseline and six weeks, then compared the proportion experiencing meaningful improvements by arm. ACP documentation was identified using natural language processing. RESULTS: We consented 77% of approached patients. In the BOLSTER arm, 91.0% of patients and 100.0% of caregivers were satisfied. Compared to EDP, more patients receiving BOLSTER experienced improvements in HRQoL (68.4% vs. 40.0%) and self-efficacy for managing symptoms (78.9% vs. 35.0%) and treatment (52.9% vs. 42.9%). The BOLSTER arm had more ACP documentation. CONCLUSIONS: BOLSTER is a feasible and acceptable intervention with the potential to improve patients' HRQoL and promote ACP. An efficacy trial comparing BOLSTER to usual care is underway. TRIAL REGISTRATION: ClinicalTrials.gov: NCT03367247; PI: Wright.
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Cuidadores , Estudos de Viabilidade , Neoplasias Peritoneais , Qualidade de Vida , Telemedicina , Humanos , Feminino , Projetos Piloto , Neoplasias Peritoneais/secundário , Neoplasias Peritoneais/psicologia , Neoplasias Peritoneais/enfermagem , Pessoa de Meia-Idade , Cuidadores/psicologia , Idoso , Neoplasias dos Genitais Femininos/enfermagem , Neoplasias dos Genitais Femininos/psicologia , Neoplasias Gastrointestinais/enfermagem , Neoplasias Gastrointestinais/psicologia , Adulto , Autoeficácia , Planejamento Antecipado de Cuidados , Aceitação pelo Paciente de Cuidados de SaúdeRESUMO
BACKGROUND: Patients with peritoneal carcinomatosis (PC) frequently undergo palliative procedures, yet these patients and their caregivers report being unprepared to manage ostomies, drains, and other complex care needs at home. The purpose of this study was to characterize the unique needs of these patients and their caregivers during care transitions. METHODS: Patients completed measures of health status and advance care planning, caregivers completed measures of preparedness and burden, and all participants completed measures of depression and anxiety. Participants detailed their experiences in individual, semi-structured interviews. We analyzed data using descriptive statistics and conventional content analysis. RESULTS: Sixty-one patients and 39 caregivers completed baseline measures. Twenty-four (39.3%) patients acknowledged their terminal illness and seven (11.5%) had discussed end-of-life care preferences with clinicians. Most (26/39, 66.7%) caregivers provided daily care. Among caregivers who managed symptoms, few were taught how to do so (6/20, 30%). Seven patients (11.5%) and seven caregivers (17.9%) met case criteria for anxiety, while 15 patients (24.6%) and two caregivers (5.1%) met case criteria for depression. Interview participants described a diagnosis of PC as a turning point for which there is no road map and identified the need for health systems change to minimize suffering. CONCLUSION: Patients with PC and their caregivers are highly burdened by symptoms and care needs. Patients' prognostic understanding and advance care planning are suboptimal. Interventions that train patients with PC and their caregivers to perform clinical care tasks, facilitate serious illness conversations, and provide psychosocial support are needed.
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Cuidados Paliativos na Terminalidade da Vida , Neoplasias Peritoneais , Assistência Terminal , Humanos , Cuidadores/psicologia , Cuidados Paliativos/métodos , Neoplasias Peritoneais/terapia , Assistência Terminal/métodosRESUMO
OBJECTIVES: The extent of health-related quality of life (HRQOL) impairments in older hematological cancer survivors (HCS) has not been sufficiently studied. We therefore examined HRQOL in older HCS compared to a community sample (CS) and investigated sociodemographic, disease- and treatment-specific, geriatric, and psychosocial factors associated with reduced HRQOL. MATERIALS AND METHODS: In this cancer-register-based cross-sectional comparative study 200 HCS, aged ≥70 years, and 252 persons of an age- and gender-matched CS completed validated questionnaires including the EORTC QLQ-C30 and EORTC QLQ-ELD14. RESULTS: Older HCS reported a reduced HRQOL in the dimensions of global QOL, physical, role, and social functioning (small clinical significance) and higher symptom burden of fatigue, nausea and vomiting, appetite loss, and poorer mobility compared to the CS (fatigue and mobility with medium, the others with small clinical significance). Perceived disease burden of comorbidities, functional disabilities, psychological distress, and depression showed statistical significance for reduced HRQOL in older HCS in multiple linear regression analysis (R2 = .602, p < .001). DISCUSSION: The screening and treatment of functional limitations and individual symptoms and the integration of a geriatric assessment into oncological practice can help to identify supportive care needs, to implement individualized, patient-centered cancer survivorship care programs and to improve older HCS's HRQOL.
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Sobreviventes de Câncer , Neoplasias Hematológicas , Qualidade de Vida , Sistema de Registros , Humanos , Idoso , Estudos Transversais , Masculino , Feminino , Sobreviventes de Câncer/psicologia , Neoplasias Hematológicas/terapia , Neoplasias Hematológicas/psicologia , Neoplasias Hematológicas/epidemiologia , Idoso de 80 Anos ou mais , Alemanha/epidemiologia , Inquéritos e Questionários , Avaliação GeriátricaRESUMO
OBJECTIVE: Emotional distress has been correlated with greater healthcare utilization and economic costs in cancer; however, the prospective relationship between positive distress screens and future healthcare utilization is less clear. Taken together, there is a critical need to synthesize studies examining the prospective relationship between emotional distress and future healthcare use to inform distress management protocols and motivate institutional resource allocation to distress management. The aim of the systematic review is to explore the relationship between emotional distress, measured via validated emotional distress questionnaires, and subsequent healthcare utilization in patients diagnosed with cancer. METHODS: A systematic search of seven databases was conducted on 29 March 2022 and updated 3 August 2023. Eligibility criteria were: (1) peer-reviewed, (2) quantitative or mixed methods, (3) adults (≥18 years) diagnosed with cancer, (4) cancer distress questionnaire(s) completed prior to healthcare utilization, and (5) written in English. Exclusion criteria included: (1) non-emotional aspects of distress (i.e., spiritual or physical distress), (2) healthcare utilization characterized via economic or monetary variables, and (3) caregiver or non-cancer populations. RESULTS: Nineteen peer-reviewed articles were included in the review. There was significant heterogeneity in emotional distress instruments and type of healthcare utilization used. Most studies examining general distress or anxiety found that increased distress was predictive of greater future healthcare utilization. CONCLUSION: The results suggest that individuals with higher levels of general distress and anxiety are at increased risk for future healthcare utilization.
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Neoplasias , Aceitação pelo Paciente de Cuidados de Saúde , Angústia Psicológica , Humanos , Neoplasias/psicologia , Neoplasias/terapia , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Inquéritos e Questionários , Estresse Psicológico/psicologiaRESUMO
OBJECTIVE: Existential distress is a common phenomenon in palliative care cancer patients. Developing a reliable and easy-to-use assessment scale for existential distress of palliative care cancer patients is crucial. The aim of this study was to develop a measurement of existential distress for palliative care cancer patients and test its properties. METHODS: The guidelines for developing a scale proposed by DeVellis were followed. Palliative care cancer patients were invited to test the draft scale. Two-hundred and nineteen valid questionnaires were included for the item analysis and exploratory factor analysis. Three-hundred and two valid questionnaires were included for confirmatory factor, convergent validity, discriminant validity, and internal consistency reliability analyses. Twenty repeated data were measured for test-retest reliability analysis. RESULTS: The Existential Distress Scale for Palliative Care Cancer Patients was developed with nine items and three dimensions, including meaninglessness, alienation, and death anxiety. The confirmatory factor analysis showed that the developed scale had a stable factor structure. The Cronbach's α for the whole scale was 0.81, and that for each dimension was 0.76, 0.67, and 0.70, respectively. The test-retest reliability of the scale was 0.79, and that of each dimension was 0.58-0.64. CONCLUSIONS: The Existential Distress Scale for Palliative Care Cancer Patients is a simple but reliable and valid tool.
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Existencialismo , Neoplasias , Cuidados Paliativos , Angústia Psicológica , Psicometria , Estresse Psicológico , Humanos , Cuidados Paliativos/psicologia , Masculino , Feminino , Reprodutibilidade dos Testes , Neoplasias/psicologia , Neoplasias/terapia , Pessoa de Meia-Idade , Inquéritos e Questionários , Idoso , Análise Fatorial , Existencialismo/psicologia , Adulto , Estresse Psicológico/psicologia , Ansiedade/psicologia , Idoso de 80 Anos ou maisRESUMO
BACKGROUND: Lynch syndrome carriers ('carriers') are presented with complex, emotionally laden choices regarding management of increased genetic cancer risks. Decision aids encourage active involvement in values-based health decisions. This paper aimed to address the research question: How do Lynch syndrome carriers make sense of their chances of developing cancer, and what are the implications for providing support with decision making about genetic cancer risk management? METHODS: Adult carriers were recruited through a genetics service or involvement with Lynch Syndrome UK. Semi-structured interviews explored lived experiences of carriers' access to care with a focus on decision support. Themes were constructed using framework analysis. These were developed into a conceptual model with recommendations for codevelopment of improved information and support including a tailored decision aid to complement integrated healthcare. RESULTS: Twenty participants included 12 women and eight men, half with a history of cancer. Six overarching themes were: (1) finding balance with Lynch; (2) living 'on higher alert'; (3) managing uncertainty: 'I've thought about it a lot'; (4) burden of responsibility: 'It's on me'; (5) access to joined-up care and support: 'There's something missing'; and (6) influence/pressure from others. CONCLUSIONS: This qualitative interview study provided in-depth insights from Lynch syndrome carriers about their lived experiences, informed by their values. Recommendations to empower carriers to make sense of genetic cancer risks and support decisions included accessible, trusted information, educated healthcare professionals, shared decision making, and joined-up integrated care pathways complemented by tailored decision aids.
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Neoplasias Colorretais Hereditárias sem Polipose , Tomada de Decisões , Pesquisa Qualitativa , Humanos , Neoplasias Colorretais Hereditárias sem Polipose/genética , Neoplasias Colorretais Hereditárias sem Polipose/psicologia , Feminino , Masculino , Pessoa de Meia-Idade , Adulto , Idoso , Predisposição Genética para Doença/psicologia , Técnicas de Apoio para a Decisão , Incerteza , Heterozigoto , Entrevistas como AssuntoRESUMO
BACKGROUND: Issues relating to certification of the Psycho-oncology profession require clarification in order to provide high quality comprehensive psychosocial care within oncology. We conducted a survey identifying existing training, professional registration requirements and accreditation programs, at national levels, for the specialty of psycho-oncology as well as the mandatory presence of this specialist in cancer teams. METHODS: This survey was conducted within the International Psycho-Oncology Society Federation of psycho-oncology societies and included representatives of each national federated society and some countries not belonging to the Federation. Survey questions were emailed requesting specific details, from the registered contact person, for each country, about psycho-oncology training, professional registration and accreditation. RESULTS: Of 43 countries contacted (34 Federated and 9 non-federated members), 39 replied and answered the questionnaire (90, 7%). Disparities were reported between countries, with details indicating differences from having no national program, to quite detailed and legally accredited requirements. The majority of countries had no formally recognized profession of "Psycho-oncologist," while some countries reported that it is mandatory (or recommended to have) a specialist in psycho-oncology in cancer centers and, thus, that an accredited, nationally recognized and certified training in this specialty exists. CONCLUSIONS: The study underlines the need to create a curriculum for the specialty (certification and accreditation) for the profession of psycho-oncology. Given the lack of internationally recognized core standards, ideas and proposals for minimum standards of good care and the training required to deliver this, are explored to clarify who may use the designation "Clinical Psycho-oncologist."
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Neoplasias , Psico-Oncologia , Humanos , Certificação , Neoplasias/terapia , Neoplasias/psicologia , Oncologia , CurrículoRESUMO
OBJECTIVE: Support people of cancer patients are at significant risk for psychological distress. Additionally, cancer patients' well-being is reciprocally associated with support peoples' psychological well-being. Informed by Uncertainty in Illness Theory, this study tests whether support person psychological well-being is influenced by provider communication and uncertainty reduction. METHODS: We tested a multiple mediation model to investigate how empathic communication facilitates psychological adjustment in support people of cancer patients and how this process is mediated by support peoples' illness uncertainty and caregiver burden. Support people of cancer patients (N = 121; including spouses, adult children, etc.) completed an online questionnaire about their perceptions of oncologists' empathy, uncertainty about the cancer patients' illness, perceived caregiving burden, and their psychological adjustment to diagnoses. RESULTS: Path analysis revealed that (1) more perceived oncologist empathy was associated with less illness uncertainty, (2) more illness uncertainty was associated with worse psychological adjustment and more perceived caregiver burden, and (3) more burden was associated with worse adjustment (χ2 (2) = 1.19, p = 0.55; RMSEA < 0.01; CFI = 1.00; SRMR = 0.02). CONCLUSIONS: Given the reciprocal nature of well-being between cancer patients and their support people, it is critical to understand and bolster support people's psychological well-being. Results demonstrated how empathic provider communication can support psychological well-being for support people of cancer patients. Additionally, this study offers theoretical contributions to understandings of illness uncertainty in caregiver populations.
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Neoplasias , Oncologistas , Adulto , Humanos , Ajustamento Emocional , Incerteza , Filhos AdultosRESUMO
OBJECTIVES: Lung cancer screening (LCS) programs are being designed and implemented globally. Early data suggests that the psychosocial impacts of LCS are influenced by program factors, but evidence synthesis is needed. This systematic review aimed to elucidate the impact of service-level factors on psychosocial outcomes to inform optimal LCS program design and future implementation. METHODS: Four databases were searched from inception to July 2023. Inclusion criteria were full-text articles published in English that reported an association between any program factors and psychosocial outcomes experienced during LCS. Study quality was appraised, and findings were synthesised narratively. RESULTS: Thirty-two articles were included; 29 studies were assessed at high or moderate risk of bias. Study designs were RCT (n = 3), pre-post (n = 6), cross-sectional (n = 12), mixed-methods (n = 1), and qualitative (n = 10) studies, and conducted primarily in the USA (n = 25). Findings suggested that targeted interventions can improve smoking-related or decisional psychosocial outcomes (e.g., smoking cessation interventions increase readiness/motivation to quit) but impacts of interventions on other psychological outcomes were varied. There was limited evidence reporting association between service delivery components and psychological outcomes, and results suggested moderation by individual aspects (e.g., expectation of results, baseline anxiety). Opportunities for discussion were key in reducing psychological harm. CONCLUSIONS: Certain program factors are reportedly associated with psychosocial impacts of LCS, but study heterogeneity and quality necessitate more real-world studies. Future work should examine (a) implementation of targeted interventions and high-value discussion during LCS, and (b) optimal methods and timing of risk and result communication, to improve psychosocial outcomes while reducing time burden for clinicians.
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Detecção Precoce de Câncer , Neoplasias Pulmonares , Humanos , Neoplasias Pulmonares/diagnóstico , Estudos TransversaisRESUMO
OBJECTIVE: To undertake an economic evaluation of a telehealth psychological support intervention for patients with primary brain tumor (PBT). METHODS: A within-trial cost-utility analysis over 6 months was performed comparing a tailored telehealth-psychological support intervention with standard care (SC) in a randomized control trial. Data were sourced from the Telehealth Making Sense of Brain Tumor (Tele-MAST) trial survey data, project records, and administrative healthcare claims. Quality-adjusted life years (QALYs) were calculated based on the EuroQol-5D-5L. Non-parametric bootstrapping with 2000 iterations was used to determine sampling uncertainty. Multiple imputation was used for handling missing data. RESULTS: The Tele-MAST trial included 82 participants and was conducted in Queensland, Australia during 2018-2021. When all healthcare claims were included, the incremental cost savings from Tele-MAST were -AU$4,327 (95% CI: -$8637, -$18) while incremental QALY gains were small at 0.03 (95% CI: -0.02, 0.08). The likelihood of Tele-MAST being cost-effective versus SC was 87% at a willingness-to-pay threshold of AU$50,000 per QALY gain. When psychological-related healthcare costs were included only, the incremental cost per QALY gain was AU$10,685 (95% CI: dominant, $24,566) and net monetary benefits were AU$534 (95% CI: $466, $602) with a 65% likelihood of the intervention being cost-effective. CONCLUSIONS: Based on this small randomized controlled trial, the Tele-MAST intervention is a cost-effective intervention for improving the quality of life of people with PBT in Australia. Patients receiving the intervention incurred significantly lower overall healthcare costs than patients in SC. There was no significant difference in costs incurred for psychological health services.
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Neoplasias Encefálicas , Telemedicina , Humanos , Análise Custo-Benefício , Qualidade de Vida , Custos de Cuidados de Saúde , Neoplasias Encefálicas/terapia , Anos de Vida Ajustados por Qualidade de VidaRESUMO
OBJECTIVES: The number of colorectal cancer (CRC) survivors is increasing and current models of survivorship care are unsustainable. There is a drive to implement alternative models of care including shared care between general practitioners (GPs) and hospital-based providers. The primary objective of this study was to explore perspectives on facilitators and barriers to shared care. The secondary objective was to explore experiences of telehealth-delivered care. METHOD: Qualitative data were collected via semi-structured interviews with participants in the Shared Care for Colorectal Cancer Survivors (SCORE) randomised controlled trial. Interviews explored patient experiences of usual and shared survivorship care during the SCORE trial. In response to the COVID pandemic, participant experiences of telehealth appointments were also explored. Interviews were recorded and transcribed for thematic analysis. RESULTS: Twenty survivors of CRC were interviewed with an even number in the shared and usual care arms; 14 (70%) were male. Facilitators to shared care included: good relationships with GPs; convenience of GPs; good communication between providers; desire to reduce public health system pressures. Barriers included: poor communication between clinicians; inaccessibility of GPs; beliefs about GP capacity; and a preference for follow-up care with the hospital after positive treatment experiences. Participants also commonly expressed a preference for telehealth-based follow-up when there was no need for a clinical examination. CONCLUSIONS: This is one of few studies that have explored patient experiences with shared and telehealth-based survivorship care. Findings can guide the implementation of these models, particularly around care coordination, communication, preparation, and personalised pathways of care.
Assuntos
Sobreviventes de Câncer , Neoplasias Colorretais , Telemedicina , Feminino , Humanos , Masculino , Neoplasias Colorretais/terapia , Sobreviventes , Sobrevivência , Pesquisa Qualitativa , Ensaios Clínicos Controlados Aleatórios como AssuntoRESUMO
OBJECTIVES: Adolescents and young adults (AYAs, 18-39 years) with cancer identifying as racially/ethnically minoritized or 2SLGBTQIA+ (Two-Spirit, lesbian, gay, bisexual, transgender, queer, intersex, asexual and "+" referring to other queer identities) have been underrepresented in cancer research. This study explores the aspects of identity that hold significance for these minoritized AYAs and how these facets impact their healthcare experiences. METHODS: Eligible participants comprised English-speaking AYAs who self-identified as racially/ethnically minoritized and/or 2SLGBTQIA+, were diagnosed with cancer between the ages of 15-39, currently aged > 18, and had received or were receiving cancer care within Canadian healthcare system. Additionally, four patient partners meeting the same criteria were recruited as research collaborators. Semi-structured one-on-one virtual interviews guided by an interview script were conducted, and qualitative analysis employed a framework approach. RESULTS: We recruited 23 participants from 4 Canadian provinces (mean age: 28, Range: 20-44); 17 identified as racially/ethnically minoritized, one as sexual/gender minoritized, and five as racially/ethnically and sexually/gender minoritized. Participants emphasized that their culture/ethnicity, religion/spirituality, sexuality, gender, family, career, and being an immigrant are important aspects of their identity, with only one participant recognizing their identity as a "person with cancer". A cancer diagnosis altered the aspects of identity deemed most significant by participants. Both visible and invisible aspects of identity shaped participants' experiences and influenced their level of trust in the healthcare system. CONCLUSION: Racially, ethnically, gender, or sexually minoritized AYAs with cancer place considerable importance on aspects of their identity that are shaped by their respective communities. Recognizing and respecting these identities are paramount for healthcare professionals to deliver safe and inclusive care.