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Conventional understanding and research regarding prognostic understanding too often focuses on transmission of information. However, merely overcoming barriers to patient understanding may not be sufficient. In this article the authors provide a more nuanced understanding of prognostic awareness, using oncological care as an overarching example, and discuss factors that may lead to prognostic discordance between physicians and patients. We summarize the current literature and research and present a model developed by the authors to characterize barriers to prognostic awareness. Ultimately, multiple influences on prognostic understanding may impede acceptance by patients even when adequate transfer of information takes place. Physicians should improve how they transmit prognostic information, as this information may be processed in different ways. A model of misunderstandings in awareness, ranging from patient understanding to patient belief, may be useful to guide future discussions. Future decision-making studies should consider these many variables so that interventions may be created to address all aspects of the prognostic disclosure process.
Coping styles can be improved by dyadic palliative care interventions and may alleviate patients’ and family caregivers’ distress. Moreover, family caregivers’ preloss resilience protects against depression after bereavement. This study aimed to determine the types of coping styles can be encouraged to increase resilience.
Methods
A self-reported questionnaire survey was administered to family caregivers at the 4 palliative care units, and their resilience was assessed using the Connor–Davidson Resilience Scale (CD-RISC) and their coping styles were assessed using the Brief Coping Orientation to Problem Experienced, as well as their background characteristics.
Results
Among 291 caregivers with a mean CD-RISC score of 56.2 (standard deviation: 16.13), internal locus of control, educational level, and history of psychotropic drug use were associated with resilience. After adjusting for the aforementioned factors, more frequent use of positive coping styles such as active coping (Spearman’s ρ = 0.29), acceptance (ρ = 0.29), positive reframing (ρ = 0.29), planning (ρ = 0.24), and humor (ρ = 0.18), was found to be associated with higher resilience. On the contrary, more frequent use of negative coping styles such as behavioral disengagement (ρ = −0.38), self-blame (ρ = −0.27), and denial (ρ = −0.14) was found to be associated with less resilience.
Significance of results
By assessing internal locus of control, educational level, and history of psychotropic medication use of family caregivers, as factors associated with their respective resilience, may help identify less resilient family caregivers who are at risk for developing major depression after bereavement. In addition, coping skill-based educational interventions targeting patients and their family caregivers that focus on specific coping styles associated with resilience may increase family caregivers’ resilience, resulting in less emotional distress and a lower risk of major depression after bereavement.
Our centre (Freeman Hospital, Newcatle Upon Tyne NHS Trust) has favoured primary surgery over chemoradiotherapy for specific advanced laryngeal cancer patients (e.g. large-volume tumours, airway compromise, significant dysphagia, T4 disease). This study reports the survival outcomes for a modern, high-volume head and neck centre favouring surgical management to determine whether this approach improves survival.
Method
Retrospective analysis of patient data over a seven-year period from a tertiary cancer centre.
Results
In total, 121 patients were identified with T3 (n = 76) or T4 (n = 45) laryngeal cancer (mean follow up 2.9 years). In the cohort treated with curative intent (n = 104, 86.0 per cent), the 2- and 5-year estimated disease-specific survival rates were 77.9 and 64.1 per cent. chemoradiotherapy had the highest 2-year disease-specific survival (92.5 per cent), followed by surgery with adjuvant therapy (81.8 per cent), radiotherapy alone (75 per cent) and surgery alone (72.4 per cent).
Conclusion
For a centre favouring primary surgery for certain advanced laryngeal cancers, the disease-specific survival appears no higher than that found in the published literature. To enhance survival, future research should focus on precision medicine to define treatment pathways in this disease.
Clinicians often rely on caregiver proxy symptom reports to treat cancer-related symptoms in children. Research has described disagreement between children’s and caregivers’ symptom reports. Factors influencing the level of agreement is an understudied area. Thus, this study aimed to examine potential factors contributing to the level of agreement between symptom reports provided by children and their caregivers.
Methods
Sixteen child–caregiver dyads participated separately in semi-structured interviews after completing a brief symptom measure independently using an electronic device. Child and caregiver quantitative symptom responses were reviewed in real-time and incorporated into the semi-structured interview. Sample characteristics and the level of agreement between symptom reports were calculated using descriptive statistics. Transcribed participant interviews were analyzed using content analysis.
Results
Nearly half of child–caregiver dyads exhibited a moderate (37.5%, n = 6) or low (18.75%, n = 3) level of agreement on the abbreviated symptom measure. Qualitative analysis identified 5 themes: recognizing symptoms, experiencing symptoms, communicating symptoms, re-assessing and treating symptoms, and influencing individual and relationship factors. Influencing individual, including a child’s tendencies or personality traits, and relationship factors intersected the other themes, partially explained their symptom perceptions, and served to facilitate or hinder symptom communication.
Significance of Results
Symptom communication is an important part of the symptom cycle, comprised of symptom recognition, experience, and management. Individual and relational factors may influence discrepancies in symptom perceptions between the child and caregiver. Clinicians and researchers should consider developing interventions to enhance symptom communication and promote collaboration between children and their caregivers to address symptom suffering during cancer treatment.
The research aimed to test the job demands-resources (JD-R) model on a sample of Italian oncology workers, and the role of perceived organizational support (POS) as a moderator of the effects of JD on outcomes (job satisfaction and burnout [BO]).
Methods
Based on the JD-R model, a correlational study was designed to investigate the relationships between JD, POS as a job resource, self-esteem (as a personal resource), and job outcomes (BO and job satisfaction); the research involved a sample of oncology nurses (N = 235) from an Italian public hospital, who completed a questionnaire during working hours. Relationships between variables were investigated with multiple regressions and moderation analysis.
Results
Results confirmed that JD predict both BO and job satisfaction; POS is a weak predictor of job outcomes, but its mediator role in the JD-outcomes relationship was confirmed: the more the nurses perceive a supportive organization, the weaker the positive relationship between JD and BO.
Significance of results
Findings are consistent with other contributions that highlighted that organizational job resources may attenuate the adverse effect of JD on positive and negative outcomes: POS may play a central role in employee well-being and health, acting as a possible moderator, and somehow defusing the positive association between JD and outcomes.
Cancer is one of the main causes of death in persons with severe mental illness (SMI). Although their cancer incidence is similar, or sometimes even potentially lower compared to the general population, their cancer mortality remains higher. The role of healthcare provision and care equity in this mortality is increasingly being addressed in research, but available studies are limited in their scope. In this context, our aim was to compare colorectal cancer (CRC) care pathways from screening to end-of-life care in patients with and without pre-existing SMI on a national scale.
Methods
This research leverages real-world data from the French national health claims database, covering the entire population, to assess cancer screening, diagnosis, treatment and post-treatment follow-up as well as quality of care (QOC) pathways among patients with incident CRC in 2015–2018, considering whether they had pre-existing SMI. We matched patients with SMI with three patients without – on age, sex, region of residence, year of cancer incidence and cancer type and location at presentation – as well as nationally established quality of CRC care indicators and regression models adjusting for relevant socio-economic, clinical and care provider-related covariates.
Results
Among patients with incident CRC, 1,532 individuals with pre-existing SMI were matched with individuals without SMI. After adjusting for covariates, both colon and rectal cancer patients with SMI were less likely to participate in the national CRC screening programme and to receive advanced diagnostic examinations (e.g., colonoscopies and several complementary diagnostic examinations). They also had lower odds of receiving combined treatments (e.g., neoadjuvant chemotherapy, radiotherapy and excision) and of having access to targeted therapy or capecitabine but higher odds for invasive care (e.g., stoma). Colon cancer patients with SMI were also more likely to have no treatment at all, and rectal cancer patients with SMI were less likely to receive post-treatment follow-up. Suboptimal QOC was observed for both groups of patients, but to a higher extent for patients with SMI, with statistically significant differences for indicators focusing on diagnosis and post-treatment follow-up.
Conclusions
Our findings reveal discrepancies across the care continuum of CRC between individuals with and without SMI and provide initial avenues on where to focus future efforts to address them, notably at the entry and exit stages of cancer care pathways, while calling for further research on the mechanisms preventing equity of physical healthcare for individuals with SMI.
The study examines perspectives of patients in home hospice care; their informal caregivers; palliative health-care providers (HCPs); and family physicians, all regarding patients’ unmet needs and quality of life (QoL)-related concerns.
Methods
Participants from all 4 groups were approached within 2 months after the patient’s admission to the home hospice care unit. Participants completed Edmonton Symptom Assessment Scale (ESAS) and Measure Yourself Concerns and Wellbeing (MYCAW) questionnaires, for patient’s QoL-related concerns. Qualitative analysis of short narratives was conducted using ATLAS.ti software for systematic coding.
Results
In total, 78 participants completed the study questionnaires: 24 patients, 22 informal caregivers, 22 palliative HCPs, and 11 family physicians. Informal caregivers gave higher scores (i.e., greater severity) than patients for fatigue on ESAS (p = 0.009); and family physicians lower scores than patients for ESAS drowsiness (p = 0.046). Compared with patients, palliative HCPs gave higher scores for patient emotional-spiritual concerns (77.2% vs. 41.7%, p = 0.02); lower scores for gastrointestinal concerns (p = 0.048); and higher scores for overall function (p = 0.049). Qualitative assessment identified a gap between how patients/informal caregivers vs. palliative HCPs/family physicians regard emotional-spiritual themes, including discussing issues related to death and dying.
Significance of results
The findings of the present study suggest that exploring a multifaceted cohort of home hospice patients, informal caregivers, palliative HCPs, and family physicians may provide insight on how to reduce communication gaps and address unmet needs of patients, particularly regarding emotional and spiritual concerns.
Conclusions
While the 4 groups were similar in their scoring of patient QoL-related concerns, there were discrepancies for some concerns (e.g., patient fatigue) and expectations regarding the need to discuss emotional and spiritual concerns, including on death and dying. Educational initiatives with programs providing training to all 4 groups may help bridge this gap, creating a more open and collaborative hospice care environment.
Depression is a common co-morbidity in women with breast cancer. Previous systematic reviews investigating cognitive behavioural therapy (CBT) for depression in this population based their conclusions on findings from studies with varying and often limited specificity, quality and/or quantity of CBT within their interventions.
Aim:
To determine the effectiveness of a specific, well-evidenced CBT protocol for depression in women with breast cancer.
Method:
Online databases were systematically searched to identify randomised controlled trials (RCTs) testing CBT (aligned to Beck’s protocol) as a treatment for depression in women with breast cancer. Screening, data extraction and risk of bias assessment were independently undertaken by two study authors. Both narrative synthesis and meta-analysis were used to analyse the data. The meta-analysis used a random effects model to compare CBT with non-active/active controls of depression using validated, self-report measures.
Results:
Six RCTs were included in the narrative synthesis, and five in the meta-analysis (n = 531 participants). Overall, CBT demonstrated an improvement in depression scores in the CBT condition versus active and non-active controls at post-intervention (SMD = –0.93 [95% CI –1.47, –0.40]). Narratively, five out of six RCTs reported statistically significant improvements in depression symptoms for CBT over control conditions for women with breast cancer.
Conclusion:
CBT aligned to Beck’s protocol for depression appears effective for treating depression in women with breast cancer. However, further research is needed for women with stage IV breast cancer. The clinical recommendation is that therapists utilise Beck’s CBT protocol for depression, whilst considering the complex presentation and adapt their practice accordingly.
A pathological communication between the trachea and oesophagus – a tracheoesophageal fistula – may be congenital or acquired, benign or malignant, necessitating a multidisciplinary approach. Conservative attempts at closure of this abnormal connection are ineffective; the interposition of healthy vascular tissue offers the least chance of recurrence.
Methods
Outcomes of an islanded fasciocutaneous internal mammary artery perforator flap applied for tracheoesophageal fistula management were assessed in four radiated patients with laryngeal carcinoma using retrospective records.
Results
Four male patients, with an average age of 60.75 years, underwent tracheoesophageal fistula closure between September 2017 and February 2021. A left-sided second internal mammary artery perforator flap was used in all cases, with an average dimension of 10.5 × 4.5 cm. There were no complications of tracheoesophageal leak, flap issues or donor site morbidity on follow up.
Conclusion
Recent advances in angiosomal territory mapping and microvascular dissection techniques, combined with an understanding of tracheoesophageal fistula pathology, have changed management perspectives in these difficult-to-treat patients.
HSCT is increasingly used for curative therapy for patients with high risk hematologic diseases. Existing research regarding the neurocognitive impact of HSCT on pediatric patients is notably variable. One area of identified risk is attention/working memory (WM) [Perkins et al., 2007]. The current study examines the degree to which difficulties in attention/WM are present prior to HSCT, as assessed using parent-report of working memory and cognitive tests of attention span and working memory.
Participants and Methods:
Participants were 19 children and adolescents ages 6-17 years (M= 9.63, SD= 3.22) who were enrolled in a prospective longitudinal study monitoring neurocognitive outcomes in children undergoing HSCT. Participants were eligible for this study if they were 2-18 years old at the time of transplant and had a diagnosis that qualified for an allogenic HSCT. Participants were ineligible if they had a pre-HSCT developmental delay, were non-English speaking, and had a prior HSCT or prior CAR T-cell therapy. Participants were 53% female and 95% Caucasian. Diagnoses in the current study sample included acute lymphoblastic leukemia (n=10), acute myeloid leukemia (n=8), and myelodysplastic syndrome (n=1).
Measures included were the Working Memory Index score from the Behavior Rating Inventory of Executive Function (BRIEF; Gioia et al., 2000) and the Digit Span subtest from the Wechsler Intelligence Scale for Children, Fourth Edition (WISC-IV; Wechsler, 2003) and the Wechsler Adult Intelligence Scale, Fourth Edition (WAIS-IV; Wechsler, 2008).
Results:
Mean scores on parent-reported WM scores and cognitive measures of attention/WM fell within normal limits, including the Digit Span Total score (M = 48.42, SD= 6.33), Digit Span Forward score (M = 47.28, SD = 9.9.83), and Digit Span Backward score (M = 48.94, SD = 6.31). However, further analyses suggested that between 11-32% of patients had scores falling at least one standard deviation below the mean on these measures, with more than half of the sample (52.6%) identified with at least one measured weakness in attention and WM. The most commonly identified weakness (33.3% of patients) was Digit Span Forward. Correlations between parent-reported WM issues and cognitive measures of attention and WM were generally strong, with parent report of WM significantly correlated with the Digit Span Total score (r(18)= -0.52, p=.02) and the Digit Span Forward score (r(18) = -0.51, p=.03). No correlations were found between Digit Span Backward and other measures of attention and WM.
There were no significant differences in WM scores between patients with ALL and AML. Additional analyses will examine potential contribution of medical factors (e.g., pre-HSCT treatment) to pre-HSCT performance on measures of attention and WM.
Conclusions:
These results suggest that, prior to undergoing HSCT, pediatric patients present with attention and WM issues. This finding has implications for research related to neurocognitive outcomes in HSCT, indicating the need to obtain pre-HSCT cognitive data in this area in order to fully understand potential change after HSCT. In addition, providers may need to consider adapting communication methods with patients during their transplant stay, given potential attention and WM issues within this population.
Individuals with advanced cancer face the challenge of living meaningfully while also preparing for end of life. The ability to sustain this duality, called “double awareness,” may reflect optimal psychological adaptation, but no psychometric scale exists to measure this construct.
Objectives
The purpose of this study was to develop a novel scale to measure double awareness in patients living with advanced cancer.
Methods
Guided by best practices for scale development, this study addresses the first three of nine steps in instrument development, including domain clarification and item generation, establishment of content validity of the items, and pre-testing of the items with patients.
Results
Instrument development resulted in a 41-item measure with two dimensions titled “life engagement” and “death contemplation.” Items retained in the measure displayed face validity and were found to be both acceptable by patients and relevant to their lived experience.
Significance of results
The results of this scale development study will allow for full validation of the measure and future use in clinical and research settings. This novel measure of double awareness will have clinical utility and relevance in a variety of settings where patients with advanced cancer are treated.
Pain is quite common in patients with cancer, especially those with metastaticdisease. Oncologic pain implications: decreased quality of life, can be an indicator of the progression of a tumor, and psychosocial effects such as anxiety and depression. Cancer pain is divided into acute form and chronic form. Advances have been made in both oncology and pain management. The application of pain management into clinical oncology is still a work in progress. Pain management that is sufficient and consistent is difficult in cancer patients. Cancer pain affects a large portion of those with cancerous disease processes. Metastatic disease tends to be associated with more pain. Pain can come from the cancer itself or from the treatment. More work is needed to standardize the evaluation and treatment of cancer pain. Further work is needed to take into account each individual’s unique circumstance.
This essential book is a comprehensive yet practical handbook on oncologic emergencies containing the important and current information on treating cancer patients in acute care settings such as emergency and urgent care departments and centers. A concise and evidence-based guide, it is the go-to resource for any acute care medical practitioner treating cancer patients, demystifying the processes of evaluating, diagnosing, and managing emergencies that often arise in the cancer patient population. The first part of the book offers an overview of cancer, anti-cancer treatment and pain and palliative care in the emergency department. It then moves on to provide a systems-based approach covering neurologic, cardiovascular, pulmonary, gastrointestinal, genitourinary, respiratory, lymphatic system, and integumentary cancer complications. The book also discusses the side effects of cancer treatments such as pain, delirium, dyspnea, and immunotherapy related adverse events, and importantly helps to bridge the gap between oncologic advancements for emergency medicine specialists.
This study aimed to validate the Japanese versions of the Trust in Oncologist Scale (TiOS-J) and the TiOS-Short Form (TiOS-SF-J).
Methods
A cross-sectional web-based survey was conducted among cancer patients in Japan. The forward-backward translation method was used to develop the TiOS-J. The web-based survey was mailed to 633 people, of whom 309 responded. After 2 weeks, 103 among the 156 first-time respondents completed the second survey to verify the reliability of the retest method. The validity was evaluated by exploratory factor analysis (EFA), confirmatory factor analysis (CFA), Spearman’s correlation coefficients between the Patient Satisfaction Questionnaire-Japanese, willingness to recommend the oncologist, trust in health care, and number of oncological consultations. To evaluate reliability, Cronbach’s α and test–retest correlation were calculated.
Results
The theoretically driven four-factor model and the EFA-driven one-factor model of the full-form TiOS-J (18 items) did not result in an acceptable fit; however, CFA supported the one-dimensionality of the 5 items from the TiOS-SF-J (χ2 (5) = 12.36, p = 0.03, goodness-of-fit index = 0.984, adjusted goodness-of-fit index = 0.952, comparative fit index = 0.991, and root mean square error of approximation = 0.069). With regard to the reliability of TiOS-J and TiOS-SF-J, the Cronbach’s alpha values were 0.94 and 0.89, respectively; the test–retest values were 0.82 and 0.78.
Significance of Results
This study indicated that the TiOS-J and TiOS-SF-J are valid and reliable instruments for measuring patients’ trust in their oncologists and can be used to assess trust in oncologists for both clinical and research purposes.
We undertook a rapid review of literature relating to the diagnosis of blood cancers, to find out what factors contribute to delays in diagnosis, including symptom recognition, appraisal and help-seeking behaviours.
Methods:
We used rapid review methodology following Tricco et al. to synthesise current literature from two electronic databases. We searched for studies about symptom appraisal help-seeking for all blood cancers published between 2001 and 2021, written in English.
Results:
Fifteen studies were included in the review, of which 10 were published in the United Kingdom. We found a number of factors associated with delays in blood cancer diagnosis. These included patient factors such as gender, age and ethnicity, as well as health system factors such as poor communication and seeing a locum clinician in primary care. A narrative synthesis of the evidence produced four types of symptom interpretation by patients: (1) symptoms compatible with normal state of health, (2) event-linked problems, (3) mild or chronic illness and (4) non-specific unwell state. These four interpretations were linked to different help-seeking behaviours. After seeking help, patients often experienced delays due to healthcare professionals’ (HCPs’) non-serious interpretation of symptoms, misleading blood tests, discontinuity of care and other barriers in the diagnostic pathway.
Conclusion:
Blood cancers are difficult to diagnose due to non-specific heterogeneous symptoms, and this is reflected in how those symptoms are interpreted by patients and managed by HCPs. It is important to understand how different interpretations affect delays in help-seeking, and what HCPs can do to support timely follow-up for patients.
Patients with cancer often have unmet needs (e.g., physical, psychosocial, and emotional) during their cancer journey, putting them at risk for distress. This study aimed to identify factors associated with distress and to investigate the association between distress and acute health-care services utilization in a cohort of breast and gynecological cancer patients across different survivorship stages.
Methods
This was a retrospective cohort study of patients who visited National Cancer Centre Singapore between September 2019 and July 2020. Distress was evaluated using the self-reported Distress Thermometer and Problem List, with a distress thermometer score ≥4 signifying high distress. Data were extracted from electronic medical records. Multivariable logistic regression was used to identify demographic or clinical variables associated with distress and estimate the odds of emergency department (ED) visits and hospitalizations within 30 days of distress screening, adjusted for covariates.
Results
Of the 1386 patients included in the analysis, 510 (36.8%) reported high distress on their first distress screening. Variables associated with high distress included younger age, presence of psychiatric diagnosis, poorer Eastern Cooperative Oncology Group performance status, and shorter duration from cancer diagnosis to distress screening. Patients with high distress were associated with higher odds of ED visits (adjusted odds ratio [OR] = 2.25, 95% confidence interval [CI]: 1.14–4.43) and hospitalizations (adjusted OR = 2.11, 95% CI: 1.27–3.50) within 30 days of distress screening.
Significance of results
Self-reported high distress was associated with higher odds of increased acute health-care services utilization (ED visits and hospitalizations) in patients with breast and gynecological cancer. Identifying the subgroups at risk of high distress could trigger early interventions that reduce unplanned health-care services utilization and possibly health-care costs.
This qualitative study aimed to investigate communication about death in consultations with patients undergoing chemotherapy with no curative intent. Specifically, we examined (i) how the topic of death was approached, who raised it, in what way, and which responses were elicited, (ii) how the topic unfolded during consultations, and (iii) whether interaction patterns or distinguishing ways of communicating can be identified.
Methods
The data consisted of 134 audio-recorded follow-up consultations. A framework of sensitizing concepts was developed, and interaction patterns were looked for when death was discussed.
Results
The subject of death and dying was most often initiated by patients, and they raised it in various ways. In most consultations, direct talk about death was initiated only once. We identified 4 interaction patterns. The most frequent consists of indirect references to death by patients, followed by a direct mention of the death of a loved one, and a statement of the oncologists aiming to skip the subject.
Significance of results
Patients and oncologists have multiple ways of raising, pursuing, addressing and evacuating the subject of death. Being attentive and recognizing these ways and associated interaction patterns can help oncologists to think and elaborate on this topic and to facilitate discussions.
There is increasing interest in the utilization of proton beam radiation therapy (PRT) to treat pediatric brain tumors based upon presumed advantages over traditional photon radiation therapy (XRT). PRT provides more conformal radiation to the tumor with reduced dose to healthy brain parenchyma. Less radiation exposure to brain tissue beyond the tumor is thought to reduce neuropsychological sequelae. This systematic review aimed to provide an overview of published studies comparing neuropsychological outcomes between PRT and XRT.
Method:
PubMed, PsychINFO, Embase, Web of Science, Scopus, and Cochrane were systematically searched for peer-reviewed published studies that compared neuropsychological outcomes between PRT and XRT in pediatric brain tumor patients.
Results:
Eight studies were included. Six of the studies utilized retrospective neuropsychological data; the majority were longitudinal studies (n = 5). XRT was found to result in lower neuropsychological functioning across time. PRT was associated with generally stable neuropsychological functioning across time, with the exception of working memory and processing speed, which showed variable outcomes across studies. However, studies inconsistently included or considered medical and sociodemographic differences between treatment groups, which may have impacted neuropsychological outcomes.
Conclusions:
Despite methodological limitations, including limited baseline neuropsychological evaluations, temporal variability between radiation treatment and first evaluation or initial and follow-up evaluations, and heterogenous samples, there is emerging evidence of sociodemographic inequities in access to PRT. With more institutions dedicating funding towards PRT, there may be the opportunity to objectively evaluate the neuropsychological benefits of patients matched on medical and sociodemographic variables.