To explore the acceptability of screening for family-reported outcomes (FROs) among cancer caregivers (unpaid family members or friends who provide support to patients with cancer) and identify from their perspective the key components of a FRO screening program.

Using a qualitative descriptive design, semi-structured interviews were undertaken with 23 adult caregivers of people with cancer between 2020 and 2021. Interview questions focused on acceptability of FRO screening, types of FROs, timing/frequency of screening, preferred resources following screening, and communication of FROs to patients and clinicians. Participants were recruited in Canada. Interviews were audio-recorded, transcribed verbatim, and analyzed using thematic analysis and constant comparison.

Almost all caregivers welcomed FRO screening in usual care and viewed it as an avenue toward obtaining more resources. Other potential benefits of FRO screening included increased self-reflection and role acknowledgment. Caregivers prioritized screening for emotional symptoms, and most preferred that the results be shared with the patient’s treating team rather than their primary care provider. Caregivers did not want results to be shared with patients, instead favoring learning how best to discuss results with patients. Many spoke of a “one stop shop” containing all relevant information on caring for the patient (first) and for themselves (second). Opinions regarding timing and frequency of FRO screening differed. Periodic administration of FRO measures, with each one not exceeding 20 minutes, was deemed appropriate.

This study extends the concept of patient-reported outcome measures to caregivers, and findings can be used to guide the development of FRO screening programs.

Managing cancer symptoms while patients receive systemic treatment remains a challenge in oncology. The use of complementary and alternative medicine (CAM) approaches like virtual reality (VR) and neurofeedback (NF) in tandem with systemic treatment might reduce symptom burden for patients. The combination of VR + NF as a CAM intervention approach is novel and understudied, particularly as it relates to supportive cancer care. The purpose of this study is to summarize our VR + NF study protocol and share preliminary results regarding study retention (across 2 treatment sessions) and preliminary impact of VR or VR + NF on patient-reported outcomes such as anxiety and pain.

We utilized a parallel arm trial design to compare preliminary impact of VR only and VR + NF on cancer symptoms among patients who are actively receiving cancer treatment.

Sixty-seven percent (n = 20) of participants returned to participate in a second VR session, and the rates of return were the same between the VR groups. Patients in the VR + NF group showed improvements in anxiety after both sessions, while patients in the VR only group showed significant improvements in pain and depression after both sessions. Patients in the VR + NF group showed improved pain after session 1.

This study demonstrates that patients can be retained over multiple treatment sessions and that VR and NF remain promising treatment approaches with regard to impact on patient-reported outcomes like anxiety and pain.

Depression is common in individuals with cancer and pain, negatively impacts quality of life, treatment adherence, tumor progression, and survival.

The primary aims of this study were to (1) evaluate the validity of the Edmonton Symptom Assessment System’s depression (ESAS-D) for detecting major depressive disorder (MDD) as diagnosed by a psychiatrist and (2) identify the best cutoff for this purpose in a sample of cancer pain individuals. The secondary aim was to compare ESAS-D with another commonly used screening measure (Patient Health Questionnaire-2 [PHQ-2]) for classifying individuals as meeting or not meeting Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) criteria for depression.

49 cancer pain individuals completed the ESAS-D and PHQ-2 Within 2 weeks, a psychiatrist interviewed the participants and determined whether or not they met criteria for MDD based on the DSM-5.

The ESAS-D demonstrated acceptable accuracy and validity for classifying MDD. A cutoff of ≥2 was identified as being best able to balance sensitivity (85%) and specificity (76%) and had an overall accuracy of 79%. A receiver operating characteristic curve analysis showed an area under the curve (AUC) of 0.81 (95% confidence interval [CI]: 0.68–0.94). The ESAS-D also compared favorably with the modified Thai PHQ-2 (sensitivity, 75%; specificity, 72%; overall accuracy, 73%; AUC, 0.74 [95% CI: 0.59–0.88]) for identifying MDD individuals.

The ESAS-D showed acceptable sensitivity, specificity, and overall accuracy for screening for MDD in cancer and pain. It could therefore be used to screen for probable depression in this population.

The COVID-19 pandemic presented many challenges for patients with palliative care needs and their care providers. During the early days of the pandemic, visitors were restricted on our palliative care units. These restrictions separated patients from their families and caregivers and led to considerable suffering for patients, families, and health-care providers. Using clinical vignettes that illustrate the suffering caused by visiting restrictions during the pandemic, the introduction of a new concept to help predict when health-care providers might be moved to advocate for their patients is introduced.

We report 3 cases of patients admitted to a palliative care unit during the COVID-19 pandemic and discuss the visiting restrictions placed on their families. In reviewing the cases, we coined a new concept, the “Suffering Quotient” (SQ), to help understand why clinical staff might be motivated to advocate for an exemption to the visiting restrictions in one situation and not another.

This paper uses 3 cases to illustrate a new concept that we have coined the Suffering Quotient. The Suffering Quotient (SQ) = Perceived Individual (or small group) Suffering/Perceived Population Suffering. This paper also explores factors that influence perceived individual suffering (the numerator) and perceived population suffering (the denominator) from the perspective of the health-care provider.

The SQ provides a means of weighing perceived patient and family suffering against perceived contextual population suffering. It reflects the threshold beyond which health-care providers, or other outside observers, are moved to advocate for the patient and ultimately how far they might be prepared to go. The SQ offers a potential means of predicting observer responses when they are exposed to multiple suffering scenarios, such as those that occurred during the COVID-19 pandemic.

Patients with malignant wounds suffer from physical and psychological symptom burden. Despite psychological support being required, the impact of malignant wounds on patients’ psychological distress is poorly investigated. We evaluated psychological distress associated with malignant wounds for patients at their end of life.

This study used the secondary analysis of the results of a large prospective cohort study, which investigated the dying process among patients with advanced cancer in 23 palliative care units in Japan. The primary outcome of this study was the prevalence of moderate to severe psychological symptom burden, evaluated by the Integrated Palliative Care Outcome Scale (IPOS)-feeling at peace scores of 2–4. In addition, the factors affecting psychological symptoms were investigated. The quality of death was also evaluated upon death using the Good Death Scale score.

Out of the total 1896 patients, 156 had malignant wounds (8.2%). Malignant wounds were more common in female and young people. The breast, head, and neck were the most prevalent primary sites. More patients with malignant wounds had IPOS-feeling at peace scores of 2–4 than patients without malignant wounds (41.0% vs. 31.3%, p = 0.024). Furthermore, psychological distress was associated with moderate to severe IPOS-pain and the frequency of dressing changes. The presence of malignant wounds did not affect the quality of death.

This study showed increased psychological distress due to malignant wounds. Patients with malignant wounds require psychological support in addition to the treatment of physical symptoms for maintaining their quality of life.

Advance care planning (ACP) interventions are supposed to affect patients’ autonomy and family health-care outcomes positively. However, the clinical benefits of ACP actualization and associated contextual factors merit questioning. Therefore, this study explores the critical contextual and procedural factors related to ACP decision-making based on the actual situation of older patients with cancer encountering end-of-life care in Taiwan.

This retrospective qualitative secondary analysis used the Kipling method (5W1H) to explore further the critical contextual and procedural factors related to ACP decision-making processes. We applied thematic analysis and dual coding for 35 narratives, including 10 patients with cancer, 10 family caregivers, and 15 health-care staff, derived from a preliminary qualitative study regarding palliative care decision-making among patients with advanced cancer, their families, and health-care staff.

We identified 6 domains detailing the contextual factors for ACP decision-making: (1) WHO (decision makers); (2) WHAT (discussion content); (3) WHEN (care plan for which disease stage); (4) WHERE (patient’s situational location); (5) WHY (reasons underpinning the decisions); and (6) HOW (the way to form the decisions).

Using the Kipling method to elaborate the contextual factors for ACP decision-making among older patients with cancer strengthens the understanding of complicated end-of-life care decision-making procedure. This study also demonstrates the dynamic and cultural complexity and the various factors considered during end-of-life care and future ACP discussion.

Recent findings narrate profiteering detrimentally impacting hospice care quality. However, no study has examined the caregiver experience of emotional and spiritual support expressed online. The purpose was to evaluate the hospice caregiver’s experience of emotional, spiritual, and bereavement support and whether the care was respectful and compassionate to the care unit.

Retrospective mixed methods of sentiment and quantitative analysis. Sources were online caregiver reviews (n = 4,279), Consumer Assessment of Healthcare Providers and Systems (CAHPS) data on the 50 largest US hospices.

Caring and compassionate professionals were lauded in nonprofit (+.57) and for-profit settings (+.46). The nonprofit experience was in the excellent range (+42) for emotional, spiritual, and bereavement support but fell to dissatisfying (–.15) among for-profits. A respectful experience (16%) was much less commonly expressed than a compassionate one (38%). Distribution of CAHPS “Treating patient with respect” (M = 89.62, SD = 2.63) and “Emotional and spiritual support” (M = 89.80, SD = 2.04) limited inter-hospice comparisons.

Compassionate professionals were thanked and praised regardless of profit status. Sadly, anger was expressed toward large, for-profits more fixated on census than emotional, spiritual, and bereavement support; thankfully nonprofits were more supportive. CAHPS items for “Treating patient with respect” and “Emotional, spiritual support” offer limited discriminating value since low CAHPS performers always had relatively high scores on these 2, yet otherwise low scores on the remaining 6. Online reviews on the same topics provide a more substantive and realistic appraisal – distinguishing high from low performers. A higher bar than mere respect is needed for the tender experience of death, dying, and grieving. Compassion is an especially relevant addition to CAHPS since caregivers named compassionate staff as a distinguishing factor. Parity for mental health at end of life is a vital research topic. Future research should also explore the caregiver expectations set on admission.

Neuroticism is a significant predictor of adverse psychological outcomes in patients with cancer. Less is known about how this relationship manifests in those with noncancer illness at the end-of-life (EOL). The objective of this study was to examine the impact of neuroticism as a moderator of physical symptoms and development of depression in patients with amyotrophic lateral sclerosis (ALS), chronic obstructive pulmonary disease (COPD), end-stage renal disease (ESRD), and frailty in the last 6 months of life.

We met this objective using secondary data collected in the Dignity and Distress across End-of-Life Populations study. The data included N = 404 patients with ALS (N = 101), COPD (N = 100), ESRD (N = 101), and frailty (N = 102) in the estimated last 6 months of life, with a range of illness-related symptoms, assessed longitudinally at 2 time points. We examined neuroticism as a moderator of illness-related symptoms at Time 1 (∼6 months before death) and depression at Time 2 (∼3 months before death) using ordinary least squares regression.

Results revealed that neuroticism significantly moderated the relationship between the following symptoms and depression measured 3 months later: drowsiness, fatigue, shortness of breath, wellbeing (ALS); drowsiness, trouble sleeping, will to live, activity (COPD); constipation (ESRD); and weakness and will to live (frailty).

These findings suggest that neuroticism represents a vulnerability factor that either attenuates or amplifies the relationship of specific illness and depressive symptoms in these noncancer illness groups at the EOL. Identifying those high in neuroticism may provide insight into patient populations that require special care at the EOL.

To investigate the impact of early vs. late palliative care (PC) on the frequency of admissions to acute hospital settings and the utilization of end-of-life (EoL) interventions in cancer decedents.

In this single-center, cross-sectional study, we examined the frequency of intensive care unit (ICU) and emergency department (ED) admissions among adult cancer decedents between 2018 and 2022 in a referral hospital in México. Additionally, we assessed EoL medical interventions, categorizing patients into 3 groups: those who received early PC (EPC), late PC (LPC), and those who did not receive PC (NPC).

We analyzed data from 1762 patients, averaging 56 ± 16.3 years old, with a predominant representation of women (56.8%). PC was administered to 45.2% of patients, but EPC was limited to only 12.3%. The median time from the initiation of PC to death was 5 days (interquartile range: 2.0–31.5). Hematological malignancies were the most prevalent, affecting 21.5% of patients. EPC recipients demonstrated notable reductions in ICU and ED admissions, as well as diminished utilization of chemotherapy, radiotherapy (RT), antibiotics, blood transfusions, and surgery when compared to both LPC and NPC groups. EPC also exhibited fewer medical interventions in the last 14 days of life, except for RT.

The findings of this study indicate that a significant proportion of EoL cancer patients receive PC; however, few receive EPC, emphasizing the need to improve accessibility to these services. Moreover, the results underscore the importance of thoughtful deliberation regarding the application of EoL medical interventions in cancer patients.

Urine drug testing (UDT) plays a significant role in monitoring patients on chronic opioid therapy (COT) for non-medical opioid use (NMOU). UDT, at times, can be inconsistent and misleading. We present a case where a patient on a buprenorphine patch had false negative results.

A female in her 70s with metastatic breast cancer presented with uncontrolled pain from a T6 compression fracture. She had no relief with tramadol 50 mg every 6 hours as needed. Due to an allergic reaction to hydromorphone, our team prescribed a buprenorphine patch of 5 μg/h. Subsequently, she expressed excellent pain control, and the clinician confirmed the patch placement on examination. She underwent a UDT during the visit. The UDT was negative for both buprenorphine and its metabolites. The literature review showed that false negative UDT results are relatively common among patients with low-dose buprenorphine patches. The combination of a thorough physical examination, a review of the Prescription Drug Monitoring Program, and reassuring scores on screening tools placed her at low risk for NMOU.

Buprenorphine has a ceiling effect on respiratory depression and a lower risk for addiction. However, when used in low doses, the drug might not have enough metabolites in the urine, leading to a false negative UDT. Such results might affect patient–physician relationships.

In addition to the UDT, a thorough history, screening for NMOU, physical exam, a review of PDMP, and a good understanding of opioid metabolism are necessary to help guide pain management.

Advanced cancer patients often experience existential distress (ED). However, the factors associated with ED remain unclear. This study investigated the current state of ED and identified the associated factors in Chinese patients with advanced cancer.

A cross-sectional study was conducted among 352 advanced cancer patients from 3 tertiary hospitals in Fujian, China. Participants were invited to complete the Existential Distress Scale, Number Rating Scale, Self-Perceived Burden Scale, Quality of Life Concerns in the End-of-Life Questionnaire, and Hospital Anxiety and Depression Scale.

This study aimed to investigate the level of existential distress among advanced cancer patients in China and identify the associated factors.

A total of 352 advanced cancer patients were recruited for this study. The average score for ED was 8.48 ± 7.12 among the advanced cancer patients. Multiple regression showed that the associated factors included depression (β = 0.32, p = 0.000), self-perceived burden (SPB) (β = 0.18, p = 0.001), the presence of a spouse (β = −0.10, p = 0.050), and reception of government subsidies (β = 0.17, p = 0.001). The factors accounted for 30.1% of the total variance in ED (F = 8.472, p < 0.001).

Among the advanced cancer patients queried, ED was found to be positively influenced by depression, SPB, and reception of government subsidies and negatively influenced by the presence of a spouse. Depression was the most important risk factor, and thus future ED interventions should target depression.

Chronically ill adolescent and young adult (AYA) patients experience barriers to accessing psychosocial support/palliative care, increasing their risk for negative psychosocial outcomes. Online health communities (OHCs) have been recommended for AYAs as part of palliative care support programs; however, we lack research investigating palliative care programs targeting AYAs’ psychosocial support needs that are delivered virtually and able to engage with patients both during and beyond inpatient admissions. Streetlight is a palliative care program designed for chronically ill AYAs. Developed as a complementary component that extends beyond the hospital setting, Streetlight Gaming and Online Team (SGOT) is an OHC aimed at facilitating social support to influence psychosocial outcomes. We investigated the existence and enactment of social support among chronically ill AYAs using SGOT and compared this to existing online social support categories to determine which support types are present within SGOT.

This was a qualitative phenomenological study. We performed deductive thematic analysis based on existing online social support categories. Nine semi-structured interviews were conducted with SGOT participants.

Social companionship/belonging, esteem/emotional, and informational support were most prevalent within SGOT. Thirteen subthemes emerged representing how social support impacted AYAs’ psychosocial wellbeing. Notably, coping with/managing illness, sense of community and normalcy, recommendations and advice, and shared interests unrelated to illnesses were subthemes that resonated with AYAs and added value to their experiences.

SGOT is an impactful OHC used to meet AYAs’ social support needs. What makes SGOT especially unique is its virtual delivery, wherein AYAs can conveniently maintain beneficial relationships with other chronically ill same-aged peers. AYAs need spaces where they can feel normal and access continuous support, both within and beyond inpatient admissions. This study enhances our understanding of online AYA psychosocial support programs. Findings can be used by healthcare professionals to implement similar palliative care and psychosocial support programs.