Information needs are one of the most common unmet supportive care needs of those living with cancer. Little is known about how existing tools for assessing information needs in the cancer context have been created or the role those with lived cancer experience played in their development.

This review aimed to characterize the development and intended use of existing cancer specific information needs assessment tools.

A systematic scoping review was conducted using a peer-reviewed protocol informed by recommendations from the Joanna Briggs Institute and the Prefered Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) checklist.

Twenty-one information needs assessment tools were included. Most tools were either breast cancer (n = 8) or primary tumor nonspecific (n = 8). Patients and informal carers participated in initial identification of questionnaire items in the minority of cases (n = 6) and were more commonly involved in reviewing the final questionnaire before use or formal psychometric testing (n = 9). Most questionnaires were not assessed for validity or reliability using rigorous quantitative psychometric testing.

Existing tools are generally not designed to provide a rigorous assessment of informational needs related to a specific cancer challenge and are limited in how they have been informed by those with lived cancer experience. Tools are needed that both rigirously address information needs for specific cancer challenges and that have been developed in partnership with those who have experienced cancer. Future directions should include understanding barriers and facilitators to developing such tools.

Hematopoietic stem cell transplantation (HSCT) or intensive chemotherapy for the treatment of malignant diseases is a highly distressing experience. The affected person’s resilience is crucial to coping with this challenging experience. Experience with resilience-enhancing interventions in children and young adults during cancer therapy is scarce. The major objective of this work was developing and evaluating an effective psycho-oncological mental training that complements the standard psychosocial care.

In this prospective, randomized single-center study, a total of 30 patients (12 to 22 years of age) who underwent HSCT or high-dose chemotherapy received either the standard psychosocial care (control group [CG]) or additionally underwent a novel and specifically developed resilience-enhancing 14-session mental training (therapy group [TG]). The patients were observed over an 8-month period and were screened for distress, thyroid, and immune function parameters, as well as generalized anxiety, affect, and sports orientation.

Patients of the TG showed significantly greater improvements in all assessed mental aspects, including anxiety, affect, competitiveness, win orientation, goal orientation, self-optimization, self-blocking, and loss of focus, as well as cortisol levels within 8 months, as opposed to patients of the CG (effect size range ξ: 0.74–1.00).

Patients who underwent the mental training displayed less anxiety, better affect, and improved mental performance with less self-blocking. This resulted in improved goal orientation, competitiveness, self-optimization, and focus when compared to the CG patients. However, larger prospective trials are necessary to substantiate these findings.

Patients with cancer at the end of life may suffer from high psychological distress, a sense of demoralization, and a lack of dignity related to their medical condition. The This Is ME (TIME) Questionnaire and the Patient Dignity Question (PDQ) are clinical tools developed to achieve comprehensive and personalized patient care and to deepen our understanding of personhood. The objective of this study was to translate and validate the TIME Questionnaire, which contains the PDQ, into Italian to evaluate patient satisfaction of the Italian version of these tools and to identify essential themes elicited by the tools.

The validation process consisted of a forward and back translation stage, data collection from a sample of 60 patients with terminal cancer, and a final consultation with a panel of experts to identify patient themes using the results of the tool.

Overall, participants felt that the PDQ/TIME questionnaire captured their essence as a person, allowed them to express their values and beliefs, and helped the health care professionals (HCP) to take better care of them. Content analysis identified “family relationships,” “global pain,” and “family roles and accomplishments” as being of most importance to patients.

The Italian versions of the PDQ/TIME Questionnaire are clear, precise, understandable, and focused on understanding personhood in patients with advanced cancer. These tools should be used to proactively enhance patient–caregiver and patient–HCP relationships and to develop new perspectives of patient care focused on the critical dimension of personhood.

In palliative care, effective communication is essential to adequately meet the needs and preferences of patients and their relatives. Effective communication includes exchanging information, facilitates shared decision-making, and promotes an empathic care relationship. We explored the perspectives of patients with an advanced illness and their relatives on effective communication with health-care professionals.

A systematic review was conducted. We searched Embase, Medline, Web of Science, CINAHL, and Cochrane for original empirical studies published between January 1, 2015 and March 4, 2021.

In total, 56 articles on 53 unique studies were included. We found 7 themes that from the perspectives of patients and relatives contribute to effective communication: (1) open and honest information. However, this open and honest communication can also trigger anxiety, stress, and existential disruption. Patients and relatives also indicated that they preferred (2) health-care professionals aligning to the patient’s and relative’s process of uptake and coping with information; (3) empathy; (4) clear and understandable language; (5) leaving room for positive coping strategies, (6) committed health-care professionals taking responsibility; and (7) recognition of relatives in their role as caregiver. Most studies in this review concerned communication with physicians in a hospital setting.

Most patients and relatives appreciate health-care professionals to not only pay attention to strictly medical issues but also to who they are as a person and the process they are going through. More research is needed on effective communication by nurses, in nonhospital settings and on communication by health-care professionals specialized in palliative care.

The aim of the present cross-sectional study was to investigate the associations between caregivers’ attachment styles, family functioning, the care setting and pre-loss grief symptoms, the burden, and the caregivers’ belief of patients’ awareness of the terminal cancer diagnosis.

A total of 101 caregivers of patients with terminal cancer in residential hospice care and home care were interviewed and completed self-report questionnaires.

Insecure attachment style and home care setting were associated with worse psychological effects in caregivers of patients with terminal cancer. Moreover, family cohesion can promote low social burden and the patient’s awareness of their terminal condition.

This study highlighted the importance of evaluating the caregiver’s attachment style, family functioning, and the setting of care during the terminal phase of the patient’s life. These findings will be useful to planning interventions to prevent burden and the pre-loss grief symptoms in the caregivers.

This study investigated the challenges and support needs of adults aged 75 and older during and after treatment for a blood cancer to aid targeted supportive resource development.

Adults aged 75 and older with a blood cancer participated in in-depth, semi-structured interviews about challenges and unmet support needs. Participants recruited through The Leukemia & Lymphoma Society were (1) in treatment or previously in treatment for a blood cancer at age 75 or older and (2) living in the United States or its territories. A thematic analysis was conducted with findings compared between 2 groups: (1) chronic -living with a chronic blood cancer; (2) acute -living with an acute blood cancer or both an acute and chronic blood cancer.

Participants (n = 50) ranged from 75 to 91 years old. Both groups described similar experiences and identified 5 challenges and support needs: (1) socioemotional impact, (2) activities of daily living and instrumental activities of daily living (ADLs/iADLs), (3) uncertainty management, (4) treatment-related stressors, and (5) COVID-19-related strain. Properties for these themes illustrate challenges and support needs, with some differences between groups. For instance, those living with a chronic blood cancer highlighted financial strain with treatment-related stressors, while those with an acute blood cancer focused more on iADLs.

Findings inform an agenda for targeted resource development for older adults with a blood cancer nearing the end of the life span. Results demonstrate the need for supportive services and family communication interventions to help patients manage iADLs and navigate socioemotional needs and challenges.

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.

Despite the clinical use of dignity therapy (DT) to enhance end-of-life experiences and promote an increased sense of meaning and purpose, little is known about the cost in practice settings. The aim is to examine the costs of implementing DT, including transcriptions, editing of legacy document, and dignity-therapists’ time for interviews/patient’s validation.

Analysis of a prior six-site, randomized controlled trial with a stepped-wedge design and chaplains or nurses delivering the DT.

The mean cost per transcript was $84.30 (SD = 24.0), and the mean time required for transcription was 52.3 minutes (SD = 14.7). Chaplain interviews were more expensive and longer than nurse interviews. The mean cost and time required for transcription varied across the study sites. The typical total cost for each DT protocol was $331–$356.

DT implementation costs varied by provider type and study site. The study’s findings will be useful for translating DT in clinical practice and future research.

Limited evidence investigates how knowledge, misconceptions, and beliefs about palliative care vary across patients with cancerous versus non-cancerous chronic disease. We examined the knowledge of and misconceptions about palliative care among these groups.

We used weighted data from the National Cancer Institute Health Information National Trends Survey 5 (Cycle 2) for nationally representative estimates and logistic regression to adjust for respondent characteristics. We identified respondents who reported having (1) cancer ([n = 585]; breast, lung, and colorectal), (2) chronic conditions ([n = 543]; heart failure, lung disease, or chronic obstructive pulmonary disorder), or (3) neither cancer nor other chronic conditions (n = 2,376).

Compared to cancer respondents, chronic condition respondents were more likely to report being Black or Hispanic, report a disability, and have lower socioeconomic status. In the sample, 65.6% of cancer respondents and 72.8% chronic conditions respondents reported they had never heard of palliative care. Chronic condition respondents were significantly (p < 0.05) less likely to report high palliative care knowledge than cancer respondents (9.1% vs. 16.6%, respectively). In adjusted analyses, cancer respondents had greater odds of high palliative care knowledge (odd ratio [OR] = 1.70; 95% confidence interval [CI] = 1.01, 2.86) compared to respondents with neither cancer nor chronic disease; chronic condition respondents did not have increased odds (OR = 0.96; CI = 0.59, 1.54).

Disparities in palliative care knowledge exist among people with non-cancerous chronic disease compared to cancer. Supportive educational efforts to boost knowledge about palliative care remains urgent and is critical for promoting equity, particularly for underserved people with chronic illnesses.

The COVID-19 pandemic posed new challenges to physical and psychological well-being. Families with pediatric cancer patients were particularly vulnerable due to changes like children staying at home, hospital policy shifts, and caring for an immunocompromised child. Limited research exists on COVID-19's effects on these families. This study aimed to assess the pandemic's impact and identify psychosocial support gaps.

Participants (N = 256) were parents of children with cancer recruited via Facebook in partnership with Momcology®, a community-based organization for pediatric cancer, between February and May 2021. Qualitative analyses used open-ended responses about the pandemic’s impact on the family.

Analysis revealed 6 themes, with positive and negative sentiments: family changes (n = 169; 61% negative), social isolation (n = 154; 100% negative), emotional impact (n = 143; 89% negative), school changes (n = 126; 80% negative), health-care changes (n = 111; 96% negative), and physical health (n = 49; 73% negative). Family changes overarched all themes and included financial strains, at-home schooling, and family bonding. Parents highlighted social isolation and the emotional impact of pandemic-related changes. School changes forced parents to balance remote-work and childcare. Health-care changes limited resources and visitation. Parents reported their children were less active and slept less but had fewer illnesses.

Many common pandemic challenges were exacerbated by the stress of caring for a child with cancer. Parents struggled most with loss of social support and feelings of isolation. Careful consideration should be given to providing resources for parents of children with cancer and their families.

Some cancer patients experience cancer-related cognitive change (CRCC). Cognitive rehabilitation interventions (CRIs) have recently been developed to help mitigate the impact of CRCC, which, untreated, can impact resumption of daily life post-cancer treatment. The experience of participants is important to understand but largely absent within research literature. This study aimed to explore how those with CRCC experience the phenomenon following completion of a CRI.

This study comprised a qualitative phenomenological approach. This involved conducting in-depth, semi-structured interviews with 6 self-referred participants from one CRI. Participants were invited to discuss their experience of CRCC and what the CRI therefore meant to them. Interviews were analyzed using interpretative phenomenological analysis.

Analysis of the findings revealed 4 key themes. (1) “Experiencing and addressing isolation” comprises reflections on posttreatment perceived abandonment and consequent feelings of belonging through CRI participation. (2) “Identity” explores participants’ reflections around perceived loss-of-self and feelings of empowerment from the intervention. (3) “Cognitive and physical balance” comprises the planning and choices participants make, supported by both their own and CRI coping strategies as they seek acceptance of cognitive change. (4) “Course reflections” explore reflections on intervention structure, format, and delivery, focusing on 2 subthemes of accessibility, flexibility and inclusivity, and communication. All participants reflected positively on their experience.

Results support further dissemination among health professionals and implementation of this CRI to better support self-reported CRCC concerns within this population. Future qualitative research should explore the long-term impact of CRI interventions.

Low-income, older adults are less likely than those with high income to participate in advance care planning (ACP); however, the pandemic may have influenced their views. The aim of this report was to explore the perceptions of COVID-19 related to everyday life and ACP.

We embedded ACP behavior inequities within the Social Ecological Model to highlight the importance of considering social inequities within an environmental context. Using a qualitative descriptive design, twenty individual interviews were conducted. Thematic analysis consisted of multiple rounds of independent and iterative coding by 2 coders that resulted in a hierarchically organized coding system. Final themes emerged through the inductive consideration of the transcript data and the deductive contribution of our theoretical framework.

Three major themes emerged: social connection, quality of life, and end-of-life planning views. COVID-19 had not changed ACP views, i.e., those with existing ACP maintained it and those without ACP still avoided planning.

Low-income, older adults experienced lower social connection and quality of life during COVID-19 but did not express changes to ACP views. Our findings of the loss of regular social practices and mental health struggles may have competed with participants’ perception that this crisis had little, if any, effect on ACP. While clinicians should monitor low-income, older adults for ACP barriers during COVID-19, policymakers should prioritize ACP at the systems level. We plan to use participatory research methods to explore for the minimal ACP impact, focusing on barriers to ACP opportunities.

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.

Palliative sedation (PS) consists of the use of drugs to alleviate the suffering of patients with refractory symptoms, through a reduction in consciousness. The aim of this study is to describe the incidence of and indications for PS in patients treated by pediatric palliative care teams (PPCT), and the relationship between PS, the place of death, and the characteristics of the care teams.

Ambispective study with the participation of 14 PPCT working in Spain.

From January to December 2019, a total of 164 patients attended by these PPCT died. Of these, 83 (50.6%) received PS during their last 24 hours. The most frequent refractory symptoms were terminal suffering (n = 40, 48.2%), dyspnea (n = 9, 10.8%), pain (n = 8, 9.6%), and convulsive state (n = 7, 8.4%). Sedation in the last 24 hours of life was more likely if the patient died in hospital, rather than at home (62.9% vs. 33.3%, p < 0.01); if the parents had not expressed their preference regarding the place of death (69.2% vs. 45.2%, p = 0.009); and if the PPCT had less than 5 years’ experience (66.7% vs. 45.5%, p = 0.018).

PS is a real possibility in pediatric end-of-life care and relates to care planning and team expertise.

Adherence plays a vital role in the effectiveness of non-pharmacological interventions. The disappearance of interventions’ effects at follow-up was caused by inadequate self-practice beyond intervention period. The purpose of this study is to examine the factors associated with adherence to aerobic exercise and Tai Chi and the impact of adherence on the short- and long-term effectiveness in improving sleep in patients with advanced lung cancer.

This study analyzed data collected in a clinical trial that evaluated the effects of aerobic exercise and Tai Chi in patients with advanced lung cancer. Two types of exercises were maintained at the same intensity but with different dosage. A total of 99 patients with advanced lung cancer who were recruited between 2018 and 2020 were included. Data were collected using self-report questionnaires.

Fifty participants were randomly assigned to aerobic exercise and 49 to Tai Chi intervention. Higher levels of satisfaction and lower levels of depression were significantly associated with higher attendance and compliance in both groups. Low fatigue levels contributed to higher attendance in Tai Chi. Both attendance and compliance were significantly associated with long-term sleep improvement.

Higher levels of satisfaction and lower levels of depression were important characteristics of attendance and compliance with home-based practice in both groups, whereas lower levels of fatigue uniquely contributed to higher attendance in Tai Chi. Better exercise adherence improves long-term effectiveness of sleep in patients with advanced lung cancer. Adopting strategies is imperative to promote exercise adherence in patients with greater levels of depression and fatigue.

To analyze how structural determinants and barriers within social systems shape options for dying well at home in Canada, while also shaping preferences for dying at home.

To inform a descriptive thematic analysis, 24 Canadian stakeholders were interviewed about their views, experiences, and preferences about dying at home. Participants included compassionate community advocates, palliative care professionals, volunteers, bereaved family caregivers, residents of rural and remote regions, service providers working with structurally vulnerable populations, and members of francophone, immigrant, and 2SLGBTQ+ communities.

Analysis of stakeholders’ insights and experiences led to the conceptualization of several structural barriers to dying well at home: inaccessible public and community infrastructure and services, a structural gap in death literacy, social stigma and discrimination, and limited access to relational social capital.

Aging in Canada, as elsewhere across the globe, has increased demand for palliative care and support, especially in the home. Support for people wishing to die at home is a key public health issue. However, while Canadian policy documents normalize dying in place as ideal, it is uncertain whether these fit with the real possibilities for people nearing the end of life. Our analysis extends existing research on health equity in palliative and end-of-life care beyond a focus on service provision. Results of this analysis identify the need to expand policymakers’ structural imaginations about what it means to die well at home in Canada.

Many patients with advanced cancer identify home as being their preferred place of death. A critical component in achieving a home death is the support of family members, who often take on responsibilities for which they feel insufficiently prepared with subsequent impacts upon their health and well-being.

This study sought to review existing qualitative literature on family carers’ experiences in providing end-of-life care at home for patients with advanced cancer, with an emphasis on exploring factors that influence how prepared they feel for their role.

A narrative review was chosen to provide an overview and analysis of qualitative findings. MEDLINE, PubMed, PsychINFO, and EMBASE databases were searched with the following search terms: “Cancer,” “Caregiver,” “End of Life Care,” “Home,” and “Qualitative.” Inclusion criteria were as follows: English language, empirical studies, adult carers, and articles published between 2011 and 2021. Data were abstracted, and study quality was assessed using the Critical Appraisal Skills Programme checklist for qualitative research.

Fourteen relevant articles were included. Three overarching themes reflecting the factors influencing family preparedness for their role were identified: “motivations for providing care,” “interactions with health-care professionals,” and “changes during the caring process.”

Inadequate preparation of family carers is apparent with regard to their role in providing end-of-life care at home for patients with advanced cancer. There is a need for health-care workers to more effectively identify the information and support needs of families, and utilize evidence-based strategies that have emerged to address these needs.

This study aimed to validate the Japanese versions of the Trust in Oncologist Scale (TiOS-J) and the TiOS-Short Form (TiOS-SF-J).

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.

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.

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.

In 2015, the Canadian Supreme Court declared that an absolute Criminal Code prohibition on assisted suicide and euthanasia was unconstitutional. In response, the Canadian parliament enacted Bill C-14 in 2016 permitting assisted suicide and euthanasia for the end-of-life context, which it termed “Medical Assistance in Dying” (MAiD). In 2021, Bill C-7 expanded eligibility for MAiD to those with disabilities not approaching their natural death. By 2021, MAiD accounted for 3.3% of all deaths in Canada with some areas of Canada presently reporting MAiD death rates upward of 7%. In 2021, Canada had 10,064 deaths by MAiD, surpassing all jurisdictions for yearly reported assisted deaths.

To examine the impact of the Canadian MAiD program and analyze its safeguards.

A working group of physicians from diverse practice backgrounds and a legal expert, several with bioethics expertise, reviewed Canadian MAiD data and case reports. Grey literature was also considered, including fact-checked and reliable Canadian mainstream newspapers and parliamentary committee hearings considering the expansion of MAiD.

Several scientific studies and reviews, provincial and correctional system authorities have identified issues with MAiD practice. As well, there is a growing accumulation of narrative accounts detailing people getting MAiD due to suffering associated with a lack of access to medical, disability, and social support.

The Canadian MAiD regime is lacking the safeguards, data collection, and oversight necessary to protect Canadians against premature death. The authors have identified these policy gaps and used MAiD cases to illustrate these findings.