Continuing to utilize healthcare as needed during an epidemic outbreak is significant, in general, and especially for cancer patients. Therefore, this study aimed to explore factors associated with health services utilization among breast cancer patients during the coronavirus disease (COVID-19) outbreak.

A cross-sectional online survey was conducted among 151 women with breast cancer. Participants completed measures of perceived health status, perceived susceptibility to COVID-19, anxiety, coping resources, health services utilization (contact with healthcare professionals and cancellation of an appointment to the oncology/hematology clinic), and socio-demographic questionnaires. A multiple hierarchical regression was calculated; contact with healthcare professionals was the dependent variable. In addition, a logistic regression was calculated; cancellation of an appointment to the oncology/hematology clinic because of the COVID-19 was the dependent variable.

Breast cancer patients’ contact with healthcare professionals was lower than their contact prior to the pandemic. A higher extent of contact with healthcare professionals was related to patients’ perception of health as bad/reasonable, lower perceived susceptibility, a lower sense of mastery, and higher social support. In addition, the odds of cancelling an appointment to the oncology/hematology clinic were higher in the presence of additional chronic illnesses and a higher sense of mastery.

The results could provide public health agencies with a more complete picture of the impact of the COVID-19 epidemic among breast cancer patients. This is significant because, in the event that COVID-19 re-emerges, the findings of the current study could help guide public health officials and possibly prevent the future avoidance of health services’ use among this high-risk population.

Patients’ desire to die (DD) is rarely discussed in palliative care (PC) due to health professionals’ (HPs) feeling of uncertainty. The aim of the study was to develop and evaluate a training to increase HPs’ self-confidence in responding professionally to patient's DD and to assess the feasibility of this approach.

The training course was developed via focus groups and relevant literature and refined with an advisory board. An evaluation design was developed to evaluate training outcomes and to examine feasibility. To assess self-confidence, knowledge, skills, and attitudes: (1) standardized surveys were applied at T1 (before training), T2 (directly after), and T3 (3 months later), and were analyzed by descriptive and non-parametric statistics; and (2) participants’ open feedback was summarized by content.

A two-day multi-disciplinary training was developed to improve self-confidence via diverse teaching methods. Twenty-four HPs from general and specialized PC were participated. Via self-rating on Likert scales at three time points, improvements were seen at T1, T2, and partly remained at T3, especially in the overall item of self-confidence in communicating with patients about their DD (means: 4.3. at T1, 5.7 at T2, and 5.9 at T3; on a 7-point scale with 1 = lowest value and 7 = highest value). Fewer improvements were found in skills (using different approaches) and attitudes (feeling less helplessness). Open feedback revealed a high appreciation for the training, especially the composition of participants, the role-play, and the overall increase of awareness of the topic.

The developed training on addressing DD meets a need and was perceived by the participants to be of added value. Future research should measure training effects with a validated instrument, including more participants, diverse participant groups, and a control group. Effects on patients should be assessed.

Demoralization is prevalent in patients with life-limiting chronic illnesses, many of whom reside in rural areas. These patients also have an increased risk of disease-related psychosocial burden due to the unique health barriers in this population. However, the factors affecting demoralization in this cohort are currently unknown. This study aimed to examine demoralization amongst the chronically ill in Lithgow, a town in rural New South Wales, Australia, and identify any correlated demographic, physical, and psychosocial factors in this population.

A cross-sectional survey of 73 participants drawn from Lithgow Hospital, the adjoining retirement village and nursing home, assessing correlating demographic, physical, psychiatric, and psychosocial factors.

The total mean score of the DS-II was 7.8 (SD 26.4), and high demoralization scores were associated with the level of education (p = 0.01), comorbid condition (p = 0.04), severity of symptom burden (p = <0.001), depression (p = <0.001), and psychological distress (p = <0.001). Prevalence of serious demoralization in this population was 27.4% according to a cutoff of a DS-II score ≥11. Of those, 11 (15%) met the criteria for clinical depression, leaving 9 (12.3%) of the cohort demoralized but not depressed.

Prevalence of demoralization was high in this population. In line with the existing literature, demoralization was associated with the level of education, symptom burden, and psychological distress, demonstrating that demoralization is a relevant psychometric factor in rural populations. Further stratification of the unique biopsychosocial factors at play in this population would contribute to better understanding the burdens experienced by people with chronic illness in this population and the nature of demoralization.

Various jurisdictions have legalized cannabis for medical purposes. As with all psychoactive medications, medical cannabis carries a risk of diversion and accidental ingestion. These risks may be particularly high among long-term medical cannabis patients as safety practices may become less salient to patients once the treatment becomes part of everyday life. The current study examines whether patients who have used medical cannabis for longer periods differ from those who have used for shorter periods in terms of sociodemographic background and other key aspects of medical cannabis use. Furthermore, the study examines the relationship between length of medical cannabis treatment and risk factors related to storage and diversion. Finally, the study examines the extent to which oncologists provide information to their patients about safe storage and disposal.

One hundred twenty-one medical cannabis oncology patients were interviewed face-to-face and 55 oncologists participated in a survey about safe storage and disposal practices related to medical cannabis.

Length of medical cannabis treatment was related to administration by smoking and using higher monthly dosages. In terms of risk for unsafe storage and diversion, length of medical cannabis was positively associated with using cannabis outside the home and having been asked to give away medical cannabis. Physicians did not report providing information to patients regarding safe storage and disposal practices in a regular manner.

Results suggest that there is an ongoing risk of unsafe storage and diversion over the course of medical cannabis treatment. Oncologists may need to give more consistent and continued training in safe storage and disposal practices, especially among long-term medical cannabis patients.

The role of aromatherapy in supportive symptom management for pediatric patients receiving palliative care has been underexplored. This pilot study aimed to measure the impact of aromatherapy using validated child-reported nausea, pain, and mood scales 5 minutes and 60 minutes after aromatherapy exposure.

The 3 intervention arms included use of a symptom-specific aromatherapy sachet scent involving deep breathing. The parallel default control arm (for those children with medical exclusion criteria to aromatherapy) included use of a visual imagery picture envelope and deep breathing. Symptom burden was sequentially assessed at 5 and 60 minutes using the Baxter Retching Faces scale for nausea, the Wong-Baker FACES scale for pain, and the Children's Anxiety and Pain Scale (CAPS) for anxious mood. Ninety children or adolescents (mean age 9.4 years) at a free-standing children's hospital in the United States were included in each arm (total n = 180).

At 5 minutes, there was a mean improvement of 3/10 (standard deviation [SD] 2.21) on the nausea scale; 2.6/10 (SD 1.83) on the pain scale; and 1.6/5 (SD 0.93) on the mood scale for the aromatherapy cohort (p < 0.0001). Symptom burden remained improved at 60 minutes post-intervention (<0.0001). Visual imagery with deep breathing improved self-reports of symptoms but was not as consistently sustained at 60 minutes.

Aromatherapy represents an implementable supportive care intervention for pediatric patients receiving palliative care consults for symptom burden. The high number of children disqualified from the aromatherapy arm because of pulmonary or allergy indications warrants further attention to outcomes for additional breathing-based integrative modalities.

Latino-advanced cancer patients engage in advance care planning (ACP) at lower rates than non-Latino patients. The goal of the present study was to understand patients' and caregivers' preferred methods of communicating about ACP.

Patients and caregivers were interviewed about cultural, religious, and familial beliefs that influence engagement in ACP and preferences for ACP communication.

Findings highlighted that Latino patients respect doctors' medical advice, prefer the involvement of family members in ACP discussions with doctors, hold optimistic religious beliefs (e.g., belief in miracles) that hinder ACP discussions, and prefer culturally competent approaches, such as using their native language, for learning how to discuss end-of-life (EoL) care preferences.

Key cultural, religious, and familial beliefs and dynamics influence Latino engagement in ACP. Patients prefer a family-centered, physician informed approach to discussing ACP with consideration and incorporation of their religious medical beliefs about EoL care. Promising targets for improving the communication of and engagement in ACP include integrating cultural and religious beliefs in ACP discussions, providing information about ACP from the physician, involving family members in ACP discussions and decision-making, and giving instructions on how to engage in ACP discussions.

The purpose of this study was to report the psychometric properties, in terms of validity and reliability, of the Unconscious Version of the Family Decision-Making Self-Efficacy Scale (FDMSE).

A convenience sample of 215 surrogate decision-makers for critically ill patients undergoing mechanical ventilation was recruited from four intensive care units at a tertiary hospital. Cross-sectional data were collected from participants between days 3 and 7 of a decisionally impaired patient's exposure to acute mechanical ventilation. Participants completed a self-report demographic form and subjective measures of family decision-making self-efficacy, preparation for decision-making, and decisional fatigue. Exploratory factor analyses, correlation coefficients, and internal consistency reliability estimates were computed to evaluate the FDMSE's validity and reliability in surrogate decision-makers of critically ill patients.

The exploratory factor analyses revealed a two-factor, 11-item version of the FDMSE was the most parsimonious in this sample. Furthermore, modified 11-item FDMSE demonstrated discriminant validity with the measures of fatigue and preparation for decision-making and demonstrated acceptable internal consistency reliability estimates.

This is the first known study to provide evidence for a two-factor structure for a modified, 11-item FDMSE. These dimensions represent treatment and palliation-related domains of family decision-making self-efficacy. The modified FDMSE is a valid and reliable instrument that can be used to measure family decision-making self-efficacy among surrogate decision-makers of the critically ill.

The Patient Dignity Question (PDQ) is a clinical tool developed with the aim of reinforcing the sense of personhood and dignity, enabling health care providers (HCPs) to see patients as people and not solely based on their illness.

To study the acceptability and feasibility of the Portuguese version of the PDQ (PDQ-PT) in a sample of palliative care patients cared for in primary care (PC).

A cross-sectional study using 20 palliative patients cared for in a PC unit. A post-PDQ satisfaction questionnaire was developed.

Twenty participants were included, 75% were male; average age was 70 years old. Patients found the summary accurate, precise, and complete; all said that they would recommend the PDQ to others and want a copy of the summary placed on their family physician's medical chart. They felt the summary heightened their sense of dignity, considered it important that HCPs have access to the summary and indicated that this information could affect the way HCPs see and care for them. The PDQ-PT's took 7 min on average to answer, and 10 min to complete the summary.

The PDQ-PT is well accepted and feasible to use with palliative patients in the context of PC and seems to be a promising tool to be implemented. Future trials are now warranted.

For patients’ entire families, it can be challenging to live with cancer during the palliative stage. However, a sense of coherence buffers stress and could help health professionals identify families that require support. Therefore, the short version of the Family Sense of Coherence Scale (FSOC-S) was translated, culturally adapted, and validated in a Swedish sample.

Translation and cross-cultural adaptation of the FSOC-S into Swedish was conducted in accordance with the World Health Organization's Process for Translation and Adaptation of Research Instruments guidelines. Participants were recruited from two oncology clinics and two palliative centers in Sweden.

Content validity was supported by experts (n = 7), persons with cancer (n = 179), and family members (n = 165). Homogeneity among items was satisfactory for persons with cancer and family members (item-total correlations were 0.45‒0.70 and 0.55‒0.72, respectively) as well as internal consistency (ordinal alpha = 0.91 and 0.91, respectively). Factor analyses supported unidimensionality. FSOC-S correlated (rs > 0.3) with hope, anxiety, and symptoms of depression, which supported convergent validity. The test-retest reliability for items ranged between fair and good (kw = 0.37‒0.61).

The FSOC-S has satisfactory measurement properties to assess family sense of coherence in persons with cancer and their family members. FSOC-S could be used to identify family members who experience low levels of perceived family sense of coherence which provides health care professionals with insight into families’ needs and ability to live with cancer in the palliative stage.

Although the psychometric properties of the Family Satisfaction with End-of-Life Care measure have been examined in diverse settings internationally; little evidence exists regarding measurement equivalence in Hispanic caregivers. The aim was to examine the psychometric properties of a short-form of the FAMCARE in Hispanics using latent variable models and place information on differential item functioning (DIF) in an existing family satisfaction item bank.

The graded form of the item response theory model was used for the analyses of DIF; sensitivity analyses were performed using a latent variable logistic regression approach. Exploratory and confirmatory factor analyses to examine dimensionality were performed within each subgroup studied. The sample included 1,834 respondents: 317 Hispanic and 1,517 non-Hispanic White caregivers of patients with Alzheimer's disease and cancer, respectively.

There was strong support for essential unidimensionality for both Hispanic and non-Hispanic White subgroups. Modest DIF of low magnitude and impact was observed; flagged items related to information sharing. Only 1 item was flagged with significant DIF by both a primary and sensitivity method after correction for multiple comparisons: “The way the family is included in treatment and care decisions.” This item was more discriminating for the non-Hispanic, White responders than for the Hispanic subsample, and was also a more severe indicator at some levels of the trait; the Hispanic respondents located at higher satisfaction levels were more likely than White non-Hispanic respondents to report satisfaction.

The magnitude of DIF was below the salience threshold for all items. Evidence supported the measurement equivalence and use for cross-cultural comparisons of the short-form FAMCARE among Hispanic caregivers, including those interviewed in Spanish.

Social work is considered to be a key player in Hospice and Palliative Care. To prove this claim, the Social Worker Task Force within the European Association for Palliative Care (EAPC) decided to carry out a survey. The aim of this survey was to generate basic data and thus to create a basis for further development of Palliative Care Social Work (PCSW) in Europe.

The online survey consisted of two parts: in Part 1, the 57 collective members of the EAPC were asked to fill in an online questionnaire containing questions about basic data. In Part 2, individual Palliative Care Social Workers (SWs) from all over Europe were asked to fill in another questionnaire with a focus on the basic conditions concerning their jobs as well, as on their tasks and roles.

Thirty-two collective members of the EAPC completed the online questionnaire. SWs can be found in all of the Palliative Care settings, but there are considerable differences between the countries concerning the prevalence of SWs. Only five countries (20%) reported specialized qualification training in PCSW and just around half of the responding SWs had such a specialized training. The responding SWs (n = 360) were quite content with their working conditions. Tasks concerning patient and family and tasks concerning the interprofessional team were most prominent. There is a significant role overlap with other professions.

The study reveals a very mixed picture of PCSW in Europe. This could be due to the high adaptability of social work, which is to be as flexible as possible to the needs of its clients. However, significant patterns, similarities, and differences emerge. The present study may, therefore, serve as a basis for further in-depth studies.

In Singapore, the core curriculum for end-of-life (EOL) care used in nurse training courses is limited. Only 45% of nurses indicated familiarity with inpatient palliative care. Nurses who lack skills in palliative care may develop anxiety and negative attitudes towards caring for dying patients. We explored whether a two-day, multimodal EOL care workshop could reduce nurses’ death anxiety and improve nurses’ skills, knowledge, and attitude towards palliative care.

Forty-five nurses participated in the workshop. At baseline before and at six weeks after, a 20-item knowledge-based questionnaire and the Death Attitude Profile-Revised (DAP-R) were administered. Six weeks post-workshop, in-depth interviews were conducted. We employed descriptive statistics, student paired samples t-test and inductive thematic analysis.

There was a significant improvement in nurses’ knowledge score (p < 0.01) and reduction in their death anxiety score (p < 0.01). Fear of Death (p = 0.025) and Death Avoidance (p = 0.047) sub-scores decreased significantly. However, the remaining domains such as Neutral Acceptance, Approach Acceptance, and Escape Acceptance did not show any significant difference, although Escape Acceptance showed a trend towards a reduced score (p = 0.063). After the workshop, more nurses adopted the Neutral Acceptance stance (76.2%), and none of them fell into the Fear of Death subdomain. Most nurses interviewed reported a positive change in their knowledge, attitudes, and practice even after the workshop.

The multimodal palliative care workshop was useful in improving nurses’ EOL knowledge and reducing their anxiety towards death. The positive change in nurses’ attitudes and practices were noted to be sustained for at least six weeks after the intervention.

Despite its established benefits, palliative care (PC) is not well known among patients and family/caregivers. From a nationally representative survey, we sought to assess the following associated with PC: knowledge, knowledge sources, and beliefs.

Data were drawn from the Health Information National Trends Study (HINTS 5 Cycle 2), a cross-sectional, survey of non-institutionalized adults aged 18+ years in the USA. Data were weighted and assessed by proportional comparison and multivariable logistic regression.

A total of 3504 respondents were identified, and approximately 29% knew about PC. In the adjusted model, less PC knowledge was associated with: lower age (those aged <50), male gender, lower education (<high school graduation or high school graduate), and non-internet users. A little over half (55%) of respondents accessed healthcare providers first for PC information, and 80% considered providers the most trusted source of PC information. Most of the participants strongly/somewhat agreed that the goal of PC is to help friends and family cope with a patient's illness (90.6%), offer social and emotional support (93.4%), and manage pain and other physical symptoms (95.1%). Similarly, a majority (83.3%) strongly/somewhat agreed that it is a doctor's obligation to inform all patients with cancer about the option of PC.

PC knowledge was generally low (1-in-3 respondents knew of PC), with significant differences according to age, gender, education, and internet use. These data provide a baseline from which PC education policies and interventions may be measured.

To investigate the effect of the time spent on quarantine on distress, anxiety, depression, and somatization of chronic disease patients during the COVID-19 quarantine in Greece and the differences in these parameters between healthy individuals and chronic disease patients.

The sample consisted of 943 healthy individuals and 163 patients (respiratory, autoimmune, cardiovascular, endocrine, patients with other diseases, and patients with more than one disease) completing sociodemographic assessments as well as the 4-Dimensional Symptom Questionnaire (4DSQ) during March 30, 2020 to May 3, 2020. Pearson's correlation was used to search for the association between time spent on quarantine and the 4DSQ subscales (distress, anxiety, depression, and somatization). Independent sample T-test and Glass's Δ were used for differences between healthy individuals and chronic disease patients in these subscales, an analysis also carried out between healthy individuals and all patient subgroups.

No statistically significant correlations were noted between the 4DSQ subscales and the quarantine duration, both for the patient and the healthy individuals’ group. Chronic disease patients had significantly higher levels of distress (p = 0.001, Δ = 0.28) and somatization (p = 0.000, Δ = 0.47), but not there were no significant differences in anxiety (p = 0.098, Δ = 0.14) and depression (p = 0.052, Δ = 0.19). Concerning head-to-head comparisons between the healthy individuals’ group and each patient group, significantly higher scores in distress were found only for patients with respiratory diseases (p = 0.028, Δ = 0.42). Regarding somatization, significantly higher scores were noted for the healthy individuals’ group compared with patients with autoimmune diseases (p = 0.010, Δ = 0.62), respiratory diseases (p = 0.027, Δ = 0.42), other diseases (p = 0.003, Δ = 0.55), and more than one disease (p = 0.012, Δ = 0.60). No statistically significant differences were found in anxiety and depression.

The results of this study indicate that interventional programs for chronic disease patients during quarantine should focus on distress and somatization, not on anxiety and depression. Respiratory patients might have more supportive care needs compared with patients with other diseases.

Scientific societies recommend early interaction between oncologic and supportive care, but there is still a lack of systematic evaluations regarding symptoms from the perspective of oncologists.

The aim of this prospective study was to evaluate the PERSONS score, in both “simultaneous care” and “supportive care” settings using the Edmonton Symptom Assessment Scale (ESAS) as a comparator.

From November 2017 to April 2018, 67 and 110 consecutive patients were enrolled in outpatient and home care cohorts, respectively. The final study population comprised 163 patients. There were no significant changes over time in the total PERSONS scores and total ESAS scale. The intra-interviewer reliability (ICC2,1) and inter-interviewer reliability (ICC2,k) showed good reproducibility (test-retest) in each group of patients: 0.60 (0.49–0.70) and 0.82 (0.75–0.87), respectively, for the home care patients and 0.73 (0.62–0.81) and 0.89 (0.83–0.93), respectively, for the outpatient cohort. There were high correlations between PERSONS and ESAS, both at the baseline and final assessments. The mean PERSONS and ESAS scores between the home care patients and outpatients were not different at the baseline and final assessments. Receiver operating characteristics (ROC) curve for the PERSONS total score revealed good diagnostic ability. Area under the curve (AUC) was 0.825 and 0.805 for improvement and deterioration, respectively.

The PERSONS score is an easy to apply tool for symptom assessment. Importantly, the PERSONS score showed high concordance with the established ESAS scale and, therefore, provides an alternative for everyday use in supportive care assessment.

The functional assessment of cancer therapy-bone marrow transplant (FACT-BMT) is a widely used instrument to assess quality of life (QOL) in hematopoietic stem cell transplant (HSCT) patients, but there is little evidence of its validity in Latin American populations. This study evaluated the psychometric properties of the Spanish language version of the FACT-BMT in Mexican patients.

First, the original version was piloted with 15 HSCT patients to obtain an adequate cultural version, resulting in the adaptation of one item. After that, the new version was completed by 139 HSCT patients.

The results showed a FACT factor structure that explains 70.84% of the total variance, a factor structure similar to the original FACT structure, and with a high internal consistency (Cronbach's alpha = 0.867). For the BMT subscale, the best factor structure included 17 items which explain 61.65% of the total variance with an adequate internal consistency (Cronbach's alpha = 0.696).

The FACT-BMT was found to be a valid and reliable instrument to evaluate QOL in Mexican patients. Our results constitute new FACT-BMT empirical evidence that supports its clinical and research uses.

At the end of life, the need for care increases. Yet, for structurally vulnerable populations (i.e., people experiencing homelessness and poverty, racism, criminalization of illicit drug use, stigma associated with mental health), access to care remains highly inaccessible. Emerging research suggests that enhancing access to palliative care for these populations requires moving care from traditional settings, such as the hospital, into community settings, like shelters and onto the street. Thus, inner-city workers (ICWs) (e.g., housing support and community outreach) have the potential to play pivotal roles in improving access to care by integrating a “palliative approach to care” in their work.

Drawing upon observational field notes and interview data collected for a larger critical ethnographic study, this secondary thematic analysis examines ICWs’ (n = 31) experiences providing care for dying clients and garners their perspectives regarding the constraints and facilitators that exist in successfully integrating a palliative approach to care in their work.

Findings reveal three themes: (1) Approaches, awareness, and training; (2) Workplace policies and filling in the gaps; and (3) Grief, bereavement, and access to supports. In brief, ICWs who draw upon harm reduction strategies strongly parallel palliative approaches to care, although more knowledge/training on palliative approaches was desired. In their continuous work with structurally vulnerable clients, ICWs have the opportunity to build trusting relationships, and over time, are able to identify those in need and assist in providing palliative support. However, despite death and dying is an everyday reality of ICWs, many described a lack of formal acknowledgement by employers and workplace support as limitations.

Findings contribute promising practices for enhancing equitable access to palliative care for society's most vulnerable populations by prioritizing front-line workers’ perspectives on how best to integrate a palliative approach to care where structurally vulnerable populations live and die.

To document the current clinical practice in 2017 for assessment of supportive care needs and provision of supportive care to women with gynecological cancer and their caregivers in Australia, and to identify the main enablers and barriers to care provision.

A total of 64 health professionals who care for Australian women with gynecological cancer responded to an electronic survey which explored their use of needs assessment, service-level processes and protocols for support service provision, and identified enablers and barriers to provision of care to both patients and caregivers. Eight respondents underwent an additional in-depth interview to elaborate on enablers, barriers, and gaps in the provision of supportive care.

Mostly, needs assessment for women and caregivers was part of current practice but done without validated tools or a checklist. Only 30% of respondents reported having documented referral pathways. Most respondents simply recorded a plan for meeting needs within the patients’ medical record (63% for patients; 46% for caregivers) rather than using a formalized care plan (15% for patients; 6% for caregivers). The interviewees’ comments supported survey results that having sufficient time to discuss issues was both the most important enabling factor and the greatest barrier to successful supportive care provision. The interviewees further discussed variations in needs based on age, cultural background, and phases within the cancer care continuum, and that best practice supportive care should involve a multidisciplinary team and customizable protocols.

There is much room for improvement in the assessment of needs and provision of supportive care to women with gynecological cancer and their caregivers. Approaches to optimize use of consultation time (e.g., needs assessment tools and referral protocols) are necessary. Flexibility in the form and mode of delivery of support may be required to meet diverse personal preferences and incorporate caregivers.