Considering recent inconsistent findings on ethnic differences in cancer pain experience, there is a need to clarify the association of ethnicity to cancer pain experience through diverse approaches. However, there currently exist only a small number of studies on ethnic differences in cancer pain experience in general, and few symptom cluster studies specifically related to ethnic differences in cancer pain experience. The purpose of this study was to cluster cancer patients who reported similar cancer pain experience, and to determine ethnic differences in the clusters.

This was a secondary analysis of the data from a larger Internet study on cancer pain experience of four major ethnic groups of cancer patients in the United States. Only 388 subjects who responded to the questions on cancer pain, cancer symptoms, and functional status were included for this secondary analysis. The data were analyzed using hierarchical cluster analysis and multinomial logistic analysis.

A three-cluster solution was adopted: 1) Cluster 1 with low pain, low symptoms, and high functional status, 2) Cluster 2 with moderate pain, low symptoms, and moderate functional staus, and 3) Cluster 3 with high pain, moderate symptoms, and low functional status. In Cluster 2, there were ethnic difference in the cancer pain and funtional status scores; Asian Americans reported lower pain scores than did other ethnic groups, and African Americans had higher funtional status scores than did other ethnic groups. In Cluster 3, there were ethnic difference in the symptom scores (p < 0.05); African Americans reported higher symptom scores than did whites.

The results of this study add an important piece of information on ethnic differences in symptom clusters. This study suggests further national scope studies on clustering multiethnic groups of cancer patients by cancer pain experience.

This study describes the cross-cultural validation and psychometric evaluation of the Spiritual Care Competence Scale – Brazilian Portuguese version. This reliable and valid instrument is recommended in the literature to measure the outcomes of the education process in the development of spiritual care competences.

This is a cross-sectional validation study following the stages proposed by Beaton et al.: translation into Portuguese, back translation into English, expert committee review for semantic equivalence, assessment of the clarity of the pre-final version, and evaluation of the psychometric properties of the final version in Portuguese. Health professionals working at a public hospital in South Brazil participated in the different stages of this study.

Regarding internal consistency, total Cronbach's alpha was 0.92 and the mean inter-item correlation was 0.29. The test-retest procedure showed no statistically significant differences in the six subscales. The intraclass correlation coefficient ranged from 0.67 to 0.84, demonstrating the stability of the scale.

The results support the psychometric quality of the scale and indicate that the adapted instrument is a valid and reliable scale with good internal consistency for measuring spiritual care competencies of health professionals in Brazilian healthcare settings.

The Carer Support Needs Assessment Tool (CSNAT) was developed in the UK and has been shown to be effective to assess and address support needs of family carers of terminally ill patients at home. In German language, there is a lack of an evidence-based comprehensive assessment tool for family carers in palliative home care. The objectives of this study were to translate and develop a culturally adapted version of the CSNAT for a German-speaking context including the assessment of feasibility, face, and content validity.

A translation and validation study was conducted in three steps: (1) translation of CSNAT following International Society for Pharmacoeconomics and Outcomes Research criteria; (2) cognitive testing in five German-speaking regions in Germany, Austria, and Switzerland with 15 family carers; and (3) pilot testing in palliative home care services. Evaluation was by telephone interviews with those involved in the assessments (family carers, health care professionals) and a focus group discussion with the health care professionals. Data were analyzed using content analysis.

The regional idiomatic variety raised challenges in the process of translation. Cognitive testing revealed semantic, conceptual, syntactic, and idiomatic issues. During the pilot, 25 assessment conversations were held. Carers reported that the German version called “KOMMA” was brief, easy to understand and to complete, and helpful. They appreciated that the items adequately addressed their support needs and reminded them of their own strengths and resources. Health care professionals observed good acceptance by carers, the expression of unexpected patterns of needs, and extensive assessment conversations, but some raised concerns that the assessment process might shift attention to carers’ needs at the cost of the patients.

A multi-step process of translation, cognitive testing, and pilot testing led to a culturally well-acceptable German tool (KOMMA). Comprehensibility, acceptance, face, and content validity, as well as feasibility were demonstrated.

This project sought to better understand the nature of medical care from the perspective of people approaching the end of life.

We asked 13 people who were dying (and a family member for each) to describe their care and the ways in which doctors' behavior fosters or inhibits the feeling that they were cared for as individuals. Interviews took a phenomenological approach. Data analysis was thematic.

Examples used by participants as evidence of care varied widely and showed the potentially complex nature of quality care. Participants' descriptions reflect the many ways people can impart and experience care as unique individuals in the medical context. They also provide clear examples of what uncaring behaviour looks and feels like.

The importance of care was clearly illustrated through descriptions of the benefits of caring behavior and the negative consequences of uncaring behavior. In order to demonstrate the empathy and compassion expected and assumed of medical graduates and engender a feeling of being cared for among their patients, doctors need to invite and develop a relationship with those they are caring for. There needs to be a focus on each member of the caring relationship primarily as individual human beings.

The provision of psychological support to caregivers is an important part of the role of the clinical staff working in palliative care. Staff knowledge and attitudes may determine their openness to referring caregivers to a psychological intervention. We recently developed a self-help intervention for grief and psychological distress among caregivers and were interested in exploring the extent to which staff knowledge and attitudes might affect future implementation. The aims of our study were to: (1) examine the acceptability of self-help psychological intervention for caregivers among palliative care clinical staff; (2) examine potential attitudinal barriers toward prolonged grief disorder (PGD) as a diagnosis and interventions for grief; and (3) bolster staff confidence in skills and knowledge in identifying and managing caregiver psychological distress.

An anonymous survey was distributed among clinical staff at two inpatient units and two community health services that assessed the acceptability of self-help interventions for caregivers, attitudes about PGD diagnosis and grief intervention, and staff confidence in skills and knowledge in assessing caregiver psychological distress.

Overall, clinical staff were positively oriented toward self-help for caregivers and intervention for grief. They were also basically confident in their skills and knowledge. While it was positive PGD attitudes that were associated with acceptability of self-help for caregivers, it was both positive and negative PGD attitudes that were associated more specifically with a willingness to refer caregivers to such an intervention.

Our findings are useful in highlighting the issues to be considered in the implementation of a self-help intervention within the healthcare service. Clinical staff seemed positively oriented toward engaging with a psychological intervention for caregivers and likely to act as key allies in implementation.

Fatigue is having high prevalence and increased acknowledgment of negative effect on the patient's well-being which has resulted in fatigue being important research variable in breast cancer patients. The recent development shows greater receptivity of health professionals to assessing cancer-related fatigue (CRF). In this review, an attempt has been made to identify CRF instruments which have been used in breast cancer patients with the detailed description about the instruments and their psychometric properties.

A search was conducted from January 2000 to April 2020 from electronic databases such as PubMed, Cochrane, Embase, and Google Scholar. The studies were included if the instrument was used to measure fatigue in breast cancer patients and its description and psychometric properties reported in breast cancer patients. The search was limited to studies in the English language and use of English version of instruments.

Among 34 CRF instruments, 9 instruments were included according to inclusion and exclusion criteria. From nine instruments, six were multidimensional, two were unidimensional, and one instrument was quality-of-life (QOL) subscale. All the scales have showed accepted reliability and validity in breast cancer patients. A minimal clinically important difference was available for Multidimensional Fatigue Symptom Inventory — Short Form, Brief Fatigue Inventory, Piper Fatigue Scale — Revised, FACIT Fatigue scale, and Fatigue symptom inventory instruments.

This review will help healthcare providers who are dealing with breast cancer patients to acknowledge and better understand what their patients are experiencing. The most appropriate tool will allow healthcare providers to use for holistic assessment of CRF. The instrument will help them to monitor their patient's condition or treatment progress, so it can be incorporated into treatment decisions for better management of fatigue.

Palliative care clinicians and researchers often seek information about patients from informants. This research examines the extent of agreement between information from patients and family caregivers who were asked to serve as collateral sources of information about the patient.

Sixty-six patients with advanced cancer and their family caregivers participated in the study. Two measurement contexts were examined: Direct observation of patients' cognitive performance (Mini-Mental State Examination) was compared with carers' subjective reports about patients' everyday cognition (Cognitive Decline subscale of the Psychogeriatric Assessment Scale), and subjective reports about patient depression were compared between patients and carers who completed parallel forms of the same scale (Geriatric Depression Scale and Geriatric Depression Scale–Collateral Source, respectively). The relationship between patient-completed and carer-completed measures was examined in four ways: the correlation between total scores in the sample, agreement about the prevalence of impaired functioning and of specific symptoms in the sample, agreement concerning whether particular patients showed impaired functioning, and agreement about the presence or absence of a specific symptom for a particular patient.

Although most measures of agreement showed that information provided by patients and carers was related, the magnitude of discrepancies was substantial.

There was no empirical justification for substituting information from a collateral source for information provided by the patient for any of the measures of agreement for either cognition or depression. The use of information from collateral sources is most appropriate when information from the patient is likely to be incomplete or inaccurate, when insight into caregivers' needs or understanding is sought, and when using a multi-informant approach to assessment.

Our aim was to develop and test a brief measure of generativity and ego-integrity that is suitable for use in palliative care settings.

Two measures of generativity and ego-integrity were modified and combined to create a new 11-item questionnaire, which was then administered to 143 adults. A principal-component analysis with oblique rotation was performed in order to identify underlying components that can best account for variation in the 11 questionnaire items.

The two-component solution was consistent with the items that, on conceptual grounds, were intended to comprise the two constructs assessed by the questionnaire.

Results suggest that the selected 11 items were good representatives of the larger scales from which they were selected, and they are expected to provide a useful means of measuring these concepts near the end of life.

Depression is a frequent problem in cancer patients, which is known to reduce quality of life; however, many cancer patients with depression are not treated because of the difficulties in assessing depression in this population. Our aim was to evaluate and improve the depression assessment strategies of palliative care (PC) physicians and oncologists.

We invited all medical oncologists and PC physicians from three cancer centers to participate in this multicenter prospective study. They were asked to classify 22 symptoms (related and specific to depression in cancer patients, related but not specific, and unrelated) as “very important,” “important,” “less important,” or “not important” for the diagnosis of depression in cancer patients, at three different time points (at baseline, after a video education program, and after 4 weeks). They were also asked to complete a questionnaire exploring physicians' perceptions of depression and of their role in its systematic screening.

All 34 eligible physicians participated. Baseline performance was good, with >70% of participants correctly classifying at least seven of nine related and specific symptoms. We found no significant improvement in scores in the immediate and 4-week follow-up tests. Additionally, 24 (83%) and 23 (79%) participants expressed support for systematic depression screening and a role for oncologists in screening, respectively.

Oncologists had good baseline knowledge about depression's main symptoms in cancer patients and a positive attitude toward being involved in screening. Underdiagnosis of depression is probably related to problems associated with the oncology working environment rather than the physicians' knowledge.

From a communication perspective, the term “do not resuscitate” (DNR) is challenging to use in end-of-life discussions because it omits the goals of care. An alternative, “Allow Natural Death” (AND), has been proposed as a better way of framing this palliative care discussion.

We present a case where a nurse unsuccessfully discusses end-of-life goals of care using the term DNR. Subsequently, with the aid of a communication trainer, he is coached to successfully use the term “AND” to facilitate this discussion and advance his goal of palliative care communication and planning.

We contrast the advantages and disadvantages of the term AND from the communication training perspective and suggest that AND-framing language replace DNR as a better way to facilitate meaningful end-of-life communication. One well-designed, randomized, controlled simulation study supports this practice. We also consider the communication implications of “natural” versus “unnatural” death.

The symptoms of thiamine deficiency vary considerably and asymptomatic cases; i.e., subclinical thiamine deficiency (SCTD), are known to exist. However, there is no information available on the treatment of SCTD.

We report a patient who underwent intravenous thiamine replacement therapy for about a month after being diagnosed with SCTD, but who developed SCTD again about three weeks after finishing the treatment.

The patient was a 64-year-old woman who, after starting treatment for cervical cancer, complained of anxiety and underwent an initial psychiatric examination. The psychiatric diagnosis was an adjustment disorder. Based on the possibility of SCTD complications due to her decreased appetite and weight loss, her serum thiamine concentration was measured and found to be low. Therefore, thiamine was administered intravenously for 29 days. At the end of treatment, thiamine administration was discontinued as there were no apparent neuropsychiatric symptoms or problems with appetite. Twenty-three days later, there were still no problems with appetite or neuropsychiatric symptoms, but a follow-up blood sample revealed that her serum thiamine was again below the normal range.

Currently, there is no information available regarding the diagnosis and treatment of SCTD in cancer patients. In some cases, such as this case, the deficiency recurs without any symptoms indicative of SCTD; therefore, further examination for diagnosis and treatment is necessary.

Hospice patients and caregivers who are members of sexual and gender minority groups (i.e., LGBTQ+) have reported experiencing unmet needs at end of life (EOL). Negative experiences often stem from challenging interactions with healthcare providers due to ineffective or poor communication and providers’ heteronormative assumptions and biases. Few studies, however, examine hospice care team (HCT) providers’ knowledge, experience, and opinions related to EOL care for LGBTQ+ patients and caregivers despite this being identified as a gap in competency and education. We sought to examine HCT providers’ perceptions regarding (1) awareness of LGBTQ+ patients and caregivers; (2) knowledge of specific or unique needs; and (3) opinions on best care and communication practices.

Six focus groups conducted with HCT providers (n = 48) currently delivering hospice care in three US states were audio-recorded and transcribed. Data were content coded (κ = 0.77), aggregated by topical categories, and descriptively summarized.

Participants were mostly white and non-Hispanic (n = 43, 89.6%), cisgender female (n = 42, 87.5%), heterosexual (n = 35, 72.9%), and religious (n = 33, 68.8%); they averaged 49 years of age (range 26–72, SD = 11.66). Awareness of LGBTQ+ patients and caregivers depended on patient or caregiver self-disclosure and contextual cues; orientation and gender identity data were not routinely collected. Many viewed being LGBTQ+ as private, irrelevant to care, and not a basis for people having specific or unique EOL needs because they saw EOL processes as universal, and believed that they treat everyone equally. Providers were more comfortable with patients of lesbian or gay orientation and reported less comfort and limited experience caring for transgender and gender-diverse patients or caregivers.

Many HCT members were unaware of specific issues impacting the EOL experiences of LGBTQ+ patients and caregivers, or how these experiences may inform important care and communication needs at EOL.

People from ethnic minority groups who receive cancer care outside their country of origin may experience poor survival and psychological outcomes relative to that nation's majority groups. This exploratory qualitative study aimed to understand the experience of a large minority group of Mandarin-speaking cancer patients (MSCPs) after diagnosis and treatment of their cancer in Australia, with a view to delineate if cultural or linguistic factors affected the quality of care provided.

We employed an exploratory qualitative design involving interviews with 22 MSCPs who were treated during 2009 at the Peter MacCallum Cancer Centre (PMCC) in Melbourne, Australia. Participants were interviewed by a bilingual psychiatrist, audiotaped, transcribed in Mandarin, and then translated into English before being subjected to thematic analysis by two independent researchers.

MSCPs experienced notable challenges as a result of both language difficulties and differing cultural approaches, which often limited their understanding of their disease and impeded their ability to access quality care and adequate support. The results call for Australia and other Western nations with increasingly diverse populations to consider how cancer care can be modified to better support people from minority groups to effectively cope with their diagnosis and treatment.

This study raises several suggestions for service improvement, including the development of bilingual communication aids, improved educational opportunities for clinical staff to aid their mastery of cultural issues and effective interpreter consultations, and improved access to supportive services offering culturally specific strategies.

Our aim was to evaluate the frequency and treatment of psychiatric symptoms in patients at palliative care units (PCUs).

Patients admitted to one of five participating PCUs in Austria were included. The short version of the Patient Health Questionnaire (PHQ–D) was used to evaluate their mental health status. Pain intensity was rated on a numeric rating scale (NRS) from 0 to 10 by patients and physicians. Patients with a previously diagnosed psychiatric disorder were compared to those without or with newly diagnosed psychiatric symptoms, based on PHQ–D results. Pain and psychopharmacological medication were assessed. Opioid doses were converted into oral morphine equivalents (OMEs).

Some 68 patients were included. Previously undetected psychiatric symptoms were identified in 38% (26 of 68), preexisting psychiatric comorbidities were evident in 25% (17), and no psychiatric symptoms were observed in 37% (25). Patients with a preexisting psychiatric comorbidity received antidepressants and benzodiazepines significantly more often than patients without or with previously undetected psychiatric symptoms (p < 0.001). Patient and physician median NRS ratings of pain intensity correlated significantly (p = 0.001). Median NRS rating showed no significant difference between patients with preexisting, previously undetected, or without psychiatric symptoms. OMEs did not differ significantly between preexisting, without, or previously undetected psychiatric symptoms. Patients with undetected and preexisting psychiatric comorbidities had a greater impairment in their activities of daily living than patients without psychiatric symptoms (p = 0.003).

Undetected psychiatric comorbidities are common in patients receiving palliative care. Screening for psychiatric symptoms should be integrated into standard palliative care to optimize treatment and reduce the psychosocial burden of the disease.

Caregivers of patients with primary brain tumor (PBT) describe feeling preoccupied with the inevitability of their loved one's death. However, there are currently no validated instruments to assess death anxiety in caregivers. This study sought to examine (1) the psychometric properties of the Death and Dying Distress Scale (DADDS), adapted for caregivers (DADDS-CG), and (2) the prevalence and correlates of death anxiety in caregivers of patients with PBT.

Caregivers (N = 67) of patients with PBT completed the DADDS-CG, Patient Health Questionnaire (PHQ-9), Generalized Anxiety Disorder (GAD-7), Fear of Cancer Recurrence (FCR-7), and God Locus of Health Control (GLHC). Caregivers’ sociodemographic information and patients’ medical characteristics were also collected. Preliminary examination of the psychometric properties of the DADDS-CG was conducted using exploratory factor analysis, Cronbach's alpha, and correlations. The prevalence and risk factors of death anxiety were assessed using frequencies, pair-wise comparisons, and correlations.

Factor analysis of the DADDS-CG revealed a two-factor structure consistent with the original DADDS. The DADDS-CG demonstrated excellent internal consistency, convergent validity with the PHQ-9, GAD-7, and FCR-7, and discriminant validity with the GLHC. Over two-thirds of caregivers reported moderate-to-severe symptoms of death anxiety. Death anxiety was highest in women and caregivers of patients with high-grade PBT.

The DADDS-CG demonstrates sound psychometric properties in caregivers of patients with PBT, who report high levels of death anxiety. Further research is needed to support the measure's value in clinical care and research — both in this population and other caregivers — in order to address this unmet, psychosocial need.

Depression is a serious psychological problem in the palliative care setting. Brief screening tools for depression are lacking and need to be brief and acceptable. This study aimed to identify the properties of the single Portuguese question “Está deprimido?” (“Are you depressed?”) to screen for depression.

Retrospective study from 100 patient's medical records identifying the answers on the single Portuguese question for depression “Está deprimido?” (“Are you depressed?”) and the HADS depression sub-scale, using a score ≥11 on the latter as the gold standard for clinically significant depressive symptoms. Sensitivity, specificity, positive predictive and negative values were calculated.

Response rate for the single Portuguese question for depression was 100%. Prevalence of depression symptoms (HADS-d ≥ 11) was 43%. To the question “Está deprimido?” 60 patients responded “yes.” Sixteen patients who replied “no” to the single question had clinically significant depressive symptoms based on the HADS depression sub-scale. The single tool had 65.2% sensitivity, 49.2% specificity and 50.0% and 64.4% of positive predictive and negative values, respectively.

In this first preliminary retrospective Portuguese study, the single question for depression has shown poor screening properties. Future research in larger and mixed patientś samples of Portuguese terminally ill is necessary to find more accurate and robust properties of this brief tool.

The diagnosis of an advanced cancer in young adulthood can bring one's life to an abrupt halt, calling attention to the present moment and creating anguish about an uncertain future. There is seldom time or physical stamina to focus on forward-thinking, social roles, relationships, or dreams. As a result, young adults (YAs) with advanced cancer frequently encounter existential distress, despair, and question the purpose of their life. We sought to investigate the meaning and function of hope throughout YAs’ disease trajectory; to discern the psychosocial processes YAs employ to engage hope; and to develop a substantive theory of hope of YAs diagnosed with advanced cancer.

Thirteen YAs (ages 23–38) diagnosed with a stage III or IV cancer were recruited throughout the eastern and southeastern United States. Participants completed one semi-structured interview in-person, by phone, or Skype, that incorporated an original timeline instrument assessing fluctuations in hope and an online socio-demographic survey. Glaser's grounded theory methodology informed constant comparative methods of data collection, analysis, and interpretation.

Findings from this study informed the development of the novel contingent hope theoretical framework, which describes the pattern of psychosocial behaviors YAs with advanced cancer employ to reconcile identities and strive for a life of meaning. The ability to cultivate the necessary agency and pathways to reconcile identities became contingent on the YAs’ participation in each of the psychosocial processes of the contingent hope theoretical framework: navigating uncertainty, feeling broken, disorienting grief, finding bearings, and identity reconciliation.

Study findings portray the influential role of hope in motivating YAs with advanced cancer through disorienting grief toward an integrated sense of self that marries cherished aspects of multiple identities. The contingent hope theoretical framework details psychosocial behaviors to inform assessments and interventions fostering hope and identity reconciliation.

Since the description by Yaskin in 1931, it has been observed that pancreatic cancer and depression are two clinical entities that share a high affinity. This observation relies on the higher incidence of depressive syndromes associated with pancreatic cancer than in any other type of digestive tumor, and on the possible occurrence of depressive symptoms several months before the diagnosis of cancer. We present here a series of cases whose screening returned positive for depression-related diagnoses in the months prior to revelation of the cancer.

We employed a structured psychiatric interview based on DSM–IV criteria (SCID–I). The diagnoses considered were major depressive episode, minor depressive episode, and subsyndromal depression. All subjects were free of psychiatric history.

Some 15 patients were initially included: 10 presented compatible criteria for a past depressive episode, 2 presented a major depressive episode, 4 met the diagnosis of minor depression, and 4 evidenced subsyndromal depression over the one-year period prior to cancer diagnosis.

This series of cases is consistent with previous work on the subject that suggested an increased vulnerability to depressive events in the premorbid phase of pancreatic cancer. If the possibility of depressive syndromes constituting the early stages of neoplastic disease is a common idea, it is still impossible to determine the natural history of these two disorders and therefore their causal linkage.