Fostering resilience in adolescence and young adulthood: Considerations for evidence-based, patient-centered oncology care.

Adolescence and young adulthood are times of growth and change. For adolescents and young adults (AYAs) who are diagnosed with cancer, the demands of illness may compound normal developmental challenges and adversely affect physical, emotional, and social health. Nevertheless, AYAs have a tremendous capacity for psychosocial adaptation and resilience. Informed by the Transactional Model of Stress and Coping, observational studies in AYA oncology suggest consistent individual, social, and existential resources that may promote resilience. To date, few interventions have been designed to examine whether resilience can be taught and whether doing so affects patient-centered outcomes. Findings point to the potential value of multicomponent programs that include various skills-building strategies, such as stress management, mindfulness, gratitude, and positive reappraisal coping, among others. New research directions include the need to evaluate delivery strategies to enhance participant adherence and retention (e.g., eHealth modalities, optimization studies) and to examine program effectiveness in community-based oncology practices (e.g., less resource-rich settings in which most AYAs receive care). Ultimately, this scholarship may inform, refine, and strengthen intervention science in resilience more broadly.

Acceptability, feasibility and preliminary effects of an online group psychotherapy intervention for adolescents and young adults with cancer.

BACKGROUND: Adolescents and young adults (AYAs; ages 15-29 years) diagnosed with cancer are increasingly recognized as an oncology population with distinct psychosocial needs. However, few specialized psychosocial interventions for AYAs currently exist. This study reports on the development of a novel group-based psychotherapy intervention to address the psychosocial needs of AYAs. The objective was to evaluate the acceptability, feasibility, and preliminary effects of the intervention. METHODS: The manualized group psychotherapy program is delivered virtually over an 8-week period by registered psychologists. Four groups (n = 5-11 AYAs per group) with a total of N = 33 participants (Mage = 20.97 years, SD = 3.68, range = 15-29 years, 76% women) were conducted. Recruitment and retention data assessed intervention feasibility. Patient-reported psychosocial outcomes were measured at baseline and immediately following the intervention to assess preliminary effects. Acceptability was assessed following the intervention using a self-report measure of participant satisfaction. RESULTS: Overall, the completion rate of the intervention was 85% (n = 28). All participants "strongly agreed" (88%) or "agreed" (13%) that they were satisfied with the group. Meeting, sharing experiences, and expressing feelings with other AYAs were identified as the most helpful aspects. Participants reported significant improvements in emotional (p < 0.05) and functional (p < 0.01) quality of life from baseline to immediately post-intervention with medium effect sizes (d = 0.58-0.70). CONCLUSIONS: Findings suggest that the intervention is feasible, acceptable, and shows promise for improving psychosocial outcomes for AYAs. Further research will refine the intervention and establish efficacy in a randomized trial.

The Supportive Care Needs of Individuals Living With Advanced or Metastatic Lung Cancer Receiving Targeted or Immunotherapies.

OBJECTIVE: Lung cancer is associated with the highest incidence and mortality of all cancers. New treatments, called targeted therapies (TT) and immunotherapies (IO), offer higher treatment efficacy and fewer side effects compared to traditional treatments but are accompanied by uncertainty and an unpredictable treatment course. There is a paucity of research on the experiences of individuals living with advanced or metastatic lung cancer receiving TT/IO, and even less is known about the supportive care needs of this population. METHODS: Twenty four participants from across Canada participated in semi-structured interviews regarding their supportive care needs. Thematic analysis was utilized to identify their supportive care needs. RESULTS: Qualitative coding identified unmet needs and challenges. All participants indicated difficulties with unmet supportive care needs, including psychological, informational, and practical needs. CONCLUSIONS: The exploration of supportive care experiences of patients receiving TT/IO exposes high distress and unmet needs. Results indicate the need for timely and accessible supportive cancer care. Results can inform patient advocacy efforts and the development of new services.

Psychosocial and Integrative Oncology: Interventions Across the Disease Trajectory.

This article provides an overview of the fields of psychosocial and integrative oncology, highlighting common psychological reactions to being diagnosed with and treated for cancer, including distress, anxiety, depression, fear of cancer recurrence and caregiver burden, as well as symptoms of fatigue, pain, and sleep disturbance. Patterns of symptomatology across the disease continuum are also discussed. Interventions targeted at treating these symptoms are reviewed, including acceptance-based and mindfulness therapies, mind-body therapies, and meaning-based approaches designed for people with advanced stages of disease, including psychedelic therapy. Common methodological issues and shortcomings of the evidence base are summarized with design recommendations, and a discussion of trends in future research including pragmatic research design, digital health interventions, and implementation science completes the article.

A Parallel-Group, Randomized Trial Examining Impact of Colposcopy Results Delivery by a Nurse Liaison on Patient-Reported Outcomes and Adherence.

OBJECTIVES: Cervical cancer is on the rise in Canada. Addressing patient anxiety and improving patient understanding of colposcopy and results may improve adherence. This randomized controlled trial examined the impact of colposcopy results delivery by a Nurse Liaison versus the referring primary care provider (PCP) on patient anxiety, and secondary outcomes including patient satisfaction, knowledge of diagnosis, and 9-month adherence to follow-up. METHODS: Patients ≥18 years old presenting for initial appointment at the study colposcopy clinic were randomized 1:1 to an intervention group (Nurse Liaison) versus a control group (PCP). After receiving colposcopy results, participants completed online measures of anxiety (State-Trait Anxiety Inventory), health care satisfaction scales (Patient Satisfaction Questionnaire-18, Health Anxiety Inventory, Visit-Specific Satisfaction Questionnaire-9), self-reported colposcopy diagnosis, and demographics. Chart review at 9 months assessed adherence to recommended colposcopy follow-up. Groups were compared on continuous and categorical variables, controlling for diagnosis severity and trait anxiety. RESULTS: The intervention group had significantly lower state anxiety with State-Trait Anxiety Inventory-state mean scores of 37.3 versus 40.7 in controls (P = 0.03). Intervention group participants were more likely to correctly report their diagnosis (84% vs. 66.3%, P = 0.003). Questionnaire responders were more likely to be in the intervention group and had a higher proportion of cervical intraepithelial neoplasia 2+ pathology. There were no differences in demographics, patient satisfaction, or adherence to follow-up between groups. CONCLUSIONS: Direct delivery of colposcopy results by a trained Nurse Liaison was associated with decreased patient anxiety around colposcopy results, and increased patient knowledge regarding diagnosis. This model may be considered to improve patient-centred care.

The essential and evolving nature of oncology social work: Accomplishments and impact, 2010-present.

This paper demonstrates the essential nature of oncology social work and the critical role that oncology social workers (OSWs) play in the achievement of high-quality cancer care that improves patient outcomes, contains cost, advances population health, reduces provider burn-out among healthcare providers, and does it in a manner that addresses disparities and achieves equity. To this end, this paper's purpose is two-fold: (1) to review and demonstrate OSW contributions to the advancement of comprehensive cancer care over the last 15 years, and (2) to consider next steps for the Association of Oncology Social Work (AOSW) and the Oncology Social Work profession to achieve its mission and calling. To enhance the viability and security of OSWs and the professional organizations that support them, this report summarizes a breadth and depth of work and includes recommendations for the profession.

From patient-reported outcomes (PROs) to family-reported outcomes (FROs): Acceptability and perceived usefulness of routine screening in cancer care.

OBJECTIVES: 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. METHODS: 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. RESULTS: 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. SIGNIFICANCE OF RESULTS: 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.

CancerSupportSourceTM -Caregiver: Development of a distress screening measure for cancer caregivers.

OBJECTIVE: Given the substantial demands of cancer caregiving, practical and psychometrically sound tools to evaluate distress among cancer caregivers are needed. CancerSupportSourceTM -Caregiver is a distress screening, referral, and support program designed to identify the unmet needs of cancer caregivers and link caregivers to desired resources and support. This study refined and finalized the CancerSupportSource-Caregiver screening measure and examined its psychometric properties. METHODS: Using an analytic sample of 400 caregivers to people with cancer, we first performed item reduction by assessing exploratory factor analysis, external/internal item quality, and judging theoretical and practical implications of items. Confirmatory factor analysis along with reliability and validity analyses were then conducted to corroborate dimensionality and psychometric properties of the final measure. Nonparametric receiver operating characteristic curve analyses determined scoring thresholds for depression and anxiety risk subscales. RESULTS: Scale refinement resulted in an 18-item measure plus one screening item assessing tobacco and substance use. Items represented five domains of caregiver concerns: emotional well-being, patient well-being, caregiving tasks, finances, and healthy lifestyle. Our analyses showed strong internal consistency and test-retest reliability, a replicable factor structure, and adequate convergent, discriminant, and known groups validity. Sensitivity of 2-item depression and 2-item anxiety risk subscales were 0.95 and 0.87, respectively. CONCLUSIONS: CancerSupportSource-Caregiver is a reliable and valid multidimensional measure of caregiver distress that also screens for risk for clinically significant depression and anxiety. It can be implemented within a distress screening, referral, and follow-up program to rapidly assess caregivers' unmet needs and enhance caregiver well-being across the care continuum.

Exploring pain among young people who have completed treatment for acute lymphoblastic leukemia: experiences of youth and caregivers.

PURPOSE: Acute lymphoblastic leukemia (ALL) is the most common cancer diagnosed among individuals <14 years of age. The disease and its treatments are associated with negative side effects, including pain, which is both prevalent and distressing. Little is known about pain experiences in this population, which has slowed efforts to identify strategies to mitigate and cope with this adverse effect. This study sought to explore youth's and their caregiver's experiences with, and perspectives of, pain in the context of pediatric cancer treatment. METHODS: Youth and one of their caregivers were recruited through (omitted for peer review). Following completion of a demographic survey, youth and one of their caregivers were interviewed separately using a semi-structured, one-on-one interview guide. Demographic information was analyzed with descriptive statistics, and interviews were transcribed verbatim and analyzed using reflexive thematic analysis. RESULTS: Youth (n = 19; Mage = 15.3 years) and caregiver (n = 19; Mage = 45.4 years) perspectives informed 4 themes: (1) my pain experience is nuanced, multidimensional, and is changing over time; (2) the cancer experience has changed the way I experience and respond to pain; (3) I used strategies to manage pain, and not all of them worked; and (4) my pain experience was influenced by people around me. CONCLUSIONS: Findings extend prior work, suggesting that pain is common, distressing, multidimensional, and influenced by social context. Results highlight the number of ways in which youth and their caregivers attempt to manage their pain and factors influencing pain experiences. Greater efforts are needed to address pain during cancer treatment and survivorship.

Mechanism underlying a brief cognitive behavioral treatment for head and neck cancer survivors with body image distress.

PURPOSE: Body image distress (BID) among head and neck cancer (HNC) survivors is a debilitating toxicity associated with depression, anxiety, stigma, and poor quality of life. BRIGHT (Building a Renewed ImaGe after Head & neck cancer Treatment) is a brief cognitive behavioral therapy (CBT) that reduces BID for these patients. This study examines the mechanism underlying BRIGHT. METHODS: In this randomized clinical trial, HNC survivors with clinically significant BID were randomized to receive five weekly psychologist-led video tele-CBT sessions (BRIGHT) or dose-and delivery matched survivorship education (attention control [AC]). Body image coping strategies, the hypothesized mediators, were assessed using the Body Image Coping Skills Inventory (BICSI). HNC-related BID was measured with the Inventory to Measure and Assess imaGe disturbancE-Head and Neck (IMAGE-HN). Causal mediation analyses were used to estimate the mediated effects of changes in BICSI scores on changes in IMAGE-HN scores. RESULTS: Among 44 HNC survivors with BID allocated to BRIGHT (n = 20) or AC (n = 24), mediation analyses showed that BRIGHT decreased avoidant body image coping (mean change in BICSI-Avoidance scale score) from baseline to 1-month post-intervention relative to AC (p = 0.039). Decreases in BICSI-Avoidance scores from baseline to 1-month resulted in decreases in IMAGE-HN scores from baseline to 3 months (p = 0.009). The effect of BRIGHT on IMAGE-HN scores at 3 months was partially mediated by a decrease in BICSI-Avoidance scores (p = 0.039). CONCLUSIONS: This randomized trial provides preliminary evidence that BRIGHT reduces BID among HNC survivors by decreasing avoidant body image coping. Further research is necessary to confirm these results and enhance the development of interventions targeting relevant pathways to reduce BID among HNC survivors. TRIAL REGISTRATION: ClinicalTrials.gov identifier NCT03831100 .

Non-pharmacological interventions to manage psychological distress in patients living with cancer: a systematic review.

BACKGROUND: Psychological distress is common in patients with cancer; interfering with physical and psychological wellbeing, and hindering management of physical symptoms. Our aim was to systematically review published evidence on non-pharmacological interventions for cancer-related psychological distress, at all stages of the disease. METHODS: We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. The review was registered on PROSPERO (CRD42022311729). Searches were made using eight online databases to identify studies meeting our inclusion criteria. Data were collected on outcome measures, modes of delivery, resources and evidence of efficacy. A meta-analysis was planned if data allowed. Quality was assessed using the Mixed Methods Appraisal Tool (MMAT). RESULTS: Fifty-nine studies with 17,628 participants were included. One third of studies included mindfulness, talking or group therapies. Half of all studies reported statistically significant improvements in distress. Statistically significant intervention effects on distress were most prevalent for mindfulness techniques. Four of these mindfulness studies had moderate effect sizes (d = -0.71[95% CI: -1.04, -0.37] p < 0.001) (d = -0.60 [95% CI: -3.44, -0.89] p < 0.001) (d = -0.77 [CI: -0.146, -1.954] p < 0.01) (d = -0.69 [CI: -0.18, -1.19] p = 0.008) and one had a large effect size (d = -1.03 [95% CI: -1.51, -0.54] p < 0.001). Heterogeneity of studies precluded meta-analysis. Study quality was variable and some had a high risk of bias. CONCLUSIONS: The majority of studies using a mindfulness intervention in this review are efficacious at alleviating distress. Mindfulness-including brief, self-administered interventions-merits further investigation, using adequately powered, high-quality studies. SYSTEMATIC REVIEW REGISTRATION: This systematic review is registered on PROSPERO, number CRD42022311729.

Identifying the Professional Development Needs Among Early Career Doctorally Prepared Oncology Professionals.

This study aimed to identify the professional development needs of early career doctorally prepared professionals in psychosocial oncology. We used a cross-sectional descriptive survey design to assess professionally related skills deemed most important to participants' academic excellence and promotion, skills they felt most and least confident to engage in, and those they were most interested to learn more about. Seventeen participants completed the survey and were, on average, 39.3 years of age (range 29-55 years) and had completed doctoral or post-doctoral training 3.1 years previously (range 0-5 years). Participants identified seeking external funding as not only the most important skill to achieve their academic excellence and promotion, but also as the skill they felt least confident to engage in. They felt most confident to engage in career planning and getting published and were most interested to learn more about how to negotiate a career/position. Participants also expressed interest in having access to a forum wherein they could collaborate with others and receive mentorship from expert oncology professionals with doctoral degrees. The findings from this study point to the need for professional development opportunities for oncology professionals before and after they complete their doctoral or post-doctoral training. Study participants' perspectives offer insights about topics that may be enhanced in doctoral and post-doctoral mentorship programs.

Caring for the Family Caregiver: Development of a Caregiver Clinic at a Cancer Hospital as Standard of Care.

Family caregivers make significant contributions to the overall care of cancer patients and are the "invisible backbone" of the health care system. Family caregivers experience a wide range of challenges and can be considered patients in their own right, requiring support and dedicated attention, which may benefit them, the patients they are caring for, and the health care system. Despite consistent evidence on caregiver distress and unmet needs, most cancer care is organized around the patient as the target of care and caregiver distress is not screened for or addressed systematically. This article describes the development of a novel clinical, educational, and research program dedicated to supporting family caregivers at the Princess Margaret Cancer Center, Toronto, Canada and presents a model for a brief psychosocial intervention for caregivers. The objective of this article is to assist others in developing services to address the needs of family caregivers as a standard of care.

An evaluation of the Interdisciplinary Psychosocial Oncology Research Group and Laboratory: An initiative to enable intersectoral and interdisciplinary collaboration.

Background: Psychosocial oncology (PSO) is an interdisciplinary field that is often practised and researched in disciplinary silos. The Interdisciplinary PSO Research Group and Laboratory (IPSORGL) was developed in Ottawa (Ontario) to foster interdisciplinary collaboration and training amongst trainees, healthcare professionals (HCPs), and researchers. Methods: The research team conducted an implementation and outcome evaluation of the IPSORGL. Data were collected using sequential mixed methods, including surveys and interviews. Results: Eight trainees, six HCPs, and five researchers completed the survey. Six trainees and four HCPs participated in an interview. Benefits of the IPSORGL included establishing interdisciplinary connections and collaborations and obtaining unique training in a supportive environment. Challenges included members' differing preferences for meeting formats and content, and difficulties prioritizing the IPSORGL over other academic or clinical demands. Conclusions: The IPSORGL fosters essential interdisciplinary training and collaboration, which bolsters psychosocial oncology research and practice. The sustainability of such initiatives, however, requires formal institutional support.

Understanding compassionate care from the patient perspective: Highlighting the experience of head and neck cancer care.

Objectives: To address the knowledge gap in the practice of compassionate healthcare by elucidating patient perspectives on compassion, empathy, and sympathy. Methods: Semi-structured telephone interviews were conducted at two time points with patients undergoing head and neck cancer treatment. Questions explored participants' understanding of compassion, sympathy, and empathy, as they relate to each other and to healthcare. Interviewers manually recorded responses. Qualitative exploratory methods were used to analyze data; inductive line-by-line coding was conducted to develop primary codes. Themes emerged through categorization of codes. Results: Ninety-five interviews conducted with 63 participants across two time points revealed four major themes - Compassion-vs-Empathy-vs-Sympathy, Coping Methods, Showing Care, and Nature of Interaction - encompassing seven categories, with a total of 24 codes. Codes were consistent across time points, except for two new codes, "positivity" and "personalized" emerging during follow-up interviews. Conclusions: Patient narrative from this study supported the concept that compassion is multidimensional and enabled several dimensions to be identified, highlighting the importance of patient perspectives in improving the provision of compassionate healthcare. Findings should be considered in future training and practice.

Psychosocial predictors of fear of cancer recurrence in a cohort of gynecologic cancer survivors.

OBJECTIVE: To describe fear of cancer recurrence in a cohort of women with gynecologic cancers and to identify psychosocial predictors of elevated fear of recurrence. METHODS: Survey data from an ongoing cohort study of gynecologic cancer survivors were used (n = 154). Relationships between fear of cancer recurrence measured by the 6-item Cancer Worry Scale in the most recent survey and psychosocial factors (cancer-related distress, depression, anxiety, hopelessness, and posttraumatic growth) assessed 6-18 months prior were examined using univariate and multivariate linear regression models, adjusting for age, cancer stage, cancer type, and time since diagnosis. RESULTS: Most participants were ≥60 years old, diagnosed with early-stage cancer, and 2-5 years post-diagnosis. The mean score on the Cancer Worry Scale was 10.31 (SD = 3.01), and 46 individuals (30.0%) scored ≥12, indicating high fear of recurrence. In univariate analyses, greater distress (p = 0.007), anxiety (p = 0.006), hopelessness (p = 0.007), and posttraumatic growth (p = 0.0006) were significantly associated with higher scores on the Cancer Worry Scale. The associations of hopelessness and posttraumatic growth with higher Cancer Worry Scale scores remained significant after adjustment for covariates. CONCLUSIONS: Fear of recurrence is frequent among gynecologic cancer survivors. Women who reported more distress, hopelessness, anxiety and, surprisingly, more post-traumatic growth reported more fear. These results contribute to our understanding of which cancer survivors are most at risk of elevated fear of recurrence and highlight the importance of continued focus on psychosocial well-being among cancer survivors.

Multilevel barriers to communication in pediatric oncology: Clinicians' perspectives.

BACKGROUND: Communication serves several functions in pediatric oncology, but communication deficiencies persist. Little is known about the broad spectrum of barriers contributing to these deficiencies. Identifying these barriers will support new strategies to improve communication. METHODS: The authors performed 10 focus groups on perceived communication barriers with nurses, nurse practitioners, physicians, and psychosocial professionals across 2 academic institutions. They analyzed transcripts by adapting a multilevel framework from organizational psychology. RESULTS: The authors identified 6 levels of barriers to communication from the clinicians' perspectives: individual, team, organization, collaborating hospital, community, and policy. Individual barriers were subdivided into clinician characteristics, family characteristics, or characteristics of the clinician-family interaction. Within each level and sublevel, several manifestations of barriers were identified. Some barriers, such as a lack of comfort with difficult topics (individual), cultural differences (individual), a lack of a shared team mental model (team), and time pressure (organization), manifested similarly across professions and institutions. Other barriers, such as a need for boundaries (individual), intimidation or embarrassment of family (individual), unclear roles and authority (team), and excessive logistical requirements (policy), manifested differently across professions. With the exception of collaborating hospitals, participants from all professions identified barriers from each level. Physicians did not discuss collaborating hospital barriers. CONCLUSIONS: Nurses, nurse practitioners, physicians, and psychosocial professionals experience communication barriers at multiple levels, which range from individual- to policy-level barriers. Yet their unique clinical roles and duties can lead to different manifestations of some barriers. This multilevel framework might help clinicians and researchers to identify targets for interventions to improve communication experiences for families in pediatric oncology. LAY SUMMARY: Clinicians and families experience many barriers to communication in pediatric oncology. The authors performed 10 focus groups with 59 clinicians who cared for children with cancer. In these focus groups, barriers to effective communication were discussed. In this article, the authors report on an analysis of the responses. Six levels of barriers to communication were found: individual, team, organization, collaborating hospital, community, and policy. With an understanding of these barriers, interventions can be developed to target these barriers in hopes of improving communication for parents and patients in pediatric oncology.

Feasibility and acceptability of the "Day 100 Talk": An interdisciplinary communication intervention during the first six months of childhood cancer treatment.

BACKGROUND: Communication gaps arise early in the childhood cancer trajectory and may persist. The authors conducted a pilot study of the feasibility and acceptability of a communication intervention, the Day 100 Talk (D100). D100 involves an interprofessional family conference during initial months of treatment between oncologists, psychosocial clinicians, and parents, facilitated by a 3-part conversation tool. METHODS: The authors enrolled English-speaking parents of children with nonrelapsed, nonprogressive cancer who were receiving continuity care from enrolled pediatric oncologists and psychosocial clinicians at a single site. The a priori feasibility threshold was 60% parent completion of the D100 intervention. Surveys from parents and professionals and debrief interviews with professionals assessed D100 acceptability. RESULTS: Thirty-seven parents (77%) and 38 oncology professionals (67%) enrolled. Twenty of 33 evaluable parents (61%) participated in a D100 family conference. Most commonly, parents did not complete the D100 intervention because of scheduling difficulties related to clinical team constraints. All 17 parents who completed a post-D100 survey agreed or strongly agreed that D100 participation was helpful. In debrief interviews, professionals identified D100 benefits, namely, stepping back to the big picture and getting on the same page, and barriers related to logistical challenges and professionals' anticipatory dread. CONCLUSIONS: The D100 intervention pilot demonstrates high acceptability among parents of children with cancer. Despite meeting the prespecified feasibility threshold, findings highlight important barriers to D100 dissemination, namely, perceived burdens on professionals. Potential strategies to reduce burden may include using virtual visit platforms, incorporating D100 elements across multiple visits, or prioritizing intervention delivery to parents with the greatest need for enhanced communication.

Validation of the Death and Dying Distress Scale in patients with advanced cancer.

BACKGROUND: Distress about dying and death is an important clinical and research outcome in advanced cancer. A 15-item Death and Dying Distress Scale (DADDS) measure has undergone preliminary validation, but full validation in a large sample has not previously been reported. We investigated its psychometric characteristics and responsiveness to a therapeutic intervention. METHODS: This is a secondary analysis of baseline data obtained from a randomized controlled trial of psychotherapeutic intervention for patients with advanced cancer. Participants (n = 386) completed the DADDS, and measures of depression, anxiety, demoralization, quality of life (including preparation for end of life), spirituality, attachment security, and symptom burden. RESULTS: A confirmatory factor analysis revealed factors related to "Finitude" and to "Dying." Both factors showed good internal consistency (Cronbach α = 0.861-0.949). DADDS scores were significantly higher in females, those with lower income and not working. Construct validity was demonstrated by a positive correlation between DADDS and demoralization (r = 0.569-0.679), and a negative correlation with preparation for the end of life (r = -0.475 to -0.678). At 6 months, intervention participants with moderate DADDS scores at baseline reported significantly lower DADDS scores on both factors compared to usual care. CONCLUSIONS: The DADDS is a valid and brief two-factor measure that assesses distress related to the shortness of time and to the process of dying. The total and factor scores have utility in the clinical and research assessment of death-related distress in patients with advanced cancer.

Lessons learned about virtual cancer care and distress screening in the time of COVID-19.

PURPOSE: Cancer-related biopsychosocial distress is highly prevalent across the cancer care continuum. The implementation of screening patients for biopsychosocial distress has become a standard of practice in cancer care. With the presence of COVID-19, clinical care has shifted from in-person care to virtual care in many instances. One of the realities of COVID-19 is the significant decrease in screening patients for biopsychosocial symptom burden. METHODS: Given that screening for distress has become an accreditation standard in many cancer programs, in the province of Alberta, Canada, all patients are screened for distress with every visit to the cancer centre. Given the presence of COVID-19, much of cancer care has shifted to being delivered virtually (through mediums such as Zoom). In this paper, we present pre- and post-COVID data on the frequency of distress screening and its impact on patient care. RESULTS: A review of pre- and post-COVID-19 screening for distress questionnaires revealed that patients who received virtual care were less satisfied in the areas of emotional support and received less resources and referrals to supportive care. CONCLUSION: The rapid integration of virtual care without the inclusion of a standardized distress screening tool was akin to a natural experiment, as two groups (virtual and in-person clinic patients) received different levels of care and interventions. Without the inclusion of distress screening, the clinical conversation around symptoms is less likely to occur and results in fewer referrals to best practices in supportive care services. Lessons learned about virtual cancer care without distress screening in the time of COVID-19 demonstrates significantly fewer patients being screened for distress and subsequently has resulted in less supportive care referrals. Going forward, we must find ways to ensure that virtual cancer care continues to support distress screening and best patient-centric care.