End-of-Life Symptom Burden among Patients with Cancer Who Were Provided Medical Assistance in Dying (MAID): A Longitudinal Propensity-Score-Matched Cohort Study.

Cancer is the primary underlying condition for most Canadians who are provided Medical Assistance in Dying (MAID). However, it is unknown whether cancer patients who are provided MAID experience disproportionally higher symptom burden compared to those who are not provided MAID. Thus, we used a propensity-score-matched cohort design to evaluate longitudinal symptom trajectories over the last 12 months of patients' lives, comparing cancer patients in Alberta who were and were not provided MAID. We utilized routinely collected retrospective Patient-Reported Outcomes (PROs) data from the Edmonton Symptom Assessment System (ESAS-r) reported by Albertans with cancer who died between July 2017 and January 2019. The data were analyzed using mixed-effect models for repeated measures to compare differences in symptom trajectories between the cohorts over time. Both cohorts experienced increasing severity in all symptoms in the year prior to death (ß from 0.086 to 0.231, p ≤ .001 to .002). Those in the MAID cohort reported significantly greater anxiety (ß = -0.831, p = .044) and greater lack of appetite (ß = -0.934, p = .039) compared to those in the non-MAID cohort. The majority (65.8%) of patients who received MAID submitted their request for MAID within one month of their death. Overall, the MAID patients did not experience disproportionally higher symptom burden. These results emphasize opportunities to address patient suffering for all patients with cancer through routine collection of PROs as well as targeted and early palliative approaches to care.

Psycho-Oncology and the Relevance of a Biopsychosocial Screening Program.

A 40-year-old unmarried Brazilian woman, Ms A, received a diagnosis of papillary renal cell carcinoma (RCC) in February 2020; she underwent nephrectomy the following month. In August, she began to experience generalized pain with subsequent scans revealing metastatic disease to the supraclavicular lymph node, liver, and vagina. In October 2020, Ms A started first-line systemic combination treatment with nivolumab (Opdivo; 3 mg/kg) plus ipilimumab (Yervoy; 1 mg/kg) every 3 weeks for 4 doses, followed by nivolumab (3 mg/kg) every 2 weeks, to be taken for 2 years. In April 2021, follow-up testing revealed a partial response to therapy, and a complete response was evident in August 2021. Ms A was first screened for biopsychosocial distress by the supportive care team in October 2020, and she completed the Edmonton Symptom Assessment System (ESAS) evaluation.During her fourth cycle of treatment in October 2020, the patient was assessed with the ESAS. During her medical visits, Ms A also expressed concern regarding her physical symptoms and admitted frequent self-monitoring for signs of recurrence or progression. Her oncologist prescribed tramadol for pain and the supportive care team recommended increased engagement in physical activity. Upon further assessment, the patient reported a belief that her psychosocial symptoms, worry about recurrence or progression, and time spent self-monitoring were a normal part of her cancer experience.

Symptom Burden and Complexity in the Last 12 Months of Life among Cancer Patients Choosing Medical Assistance in Dying (MAID) in Alberta, Canada.

BACKGROUND: In 2019, cancer patients comprised over 65% of all individuals who requested and received Medical Assistance in Dying (MAID) in Canada. This descriptive study sought to understand the self-reported symptom burden and complexity of cancer patients in the 12 months prior to receiving MAID in Alberta. METHODS: Between July 2017 and January 2019, 337 cancer patients received MAID in Alberta. Patient characteristics were descriptively analyzed. As such, 193 patients (57.3%) completed at least one routine symptom-reporting questionnaire in their last year of life. Mixed effects models and generalized estimating equations were utilized to examine the trajectories of individual symptoms and overall symptom complexity within the cohort over this time. RESULTS: The results revealed that all nine self-reported symptoms, and the overall symptom complexity of the cohort, increased as patients' MAID provision date approached, particularly in the last 3 months of life. While less than 20% of patients experienced high symptom complexity 12 months prior to MAID, this increased to 60% in the month of MAID provision. CONCLUSIONS: Cancer patients in this cohort experienced increased symptom burden and complexity leading up to their death. These findings could serve as a flag to clinicians to closely monitor advanced cancer patients' symptoms, and provide appropriate support and interventions as needed.

Psychosocial risk, symptom burden, and concerns in families affected by childhood cancer.

PURPOSE: The revised Psychosocial Assessment Tool (PATrev) is a common family-level risk-based screening tool for pediatric oncology that has gained support for its ability to predict, at diagnosis, the degree of psychosocial support a family may require throughout the treatment trajectory. However, ongoing screening for symptoms and concerns (e.g., feeling alone, understanding treatment) remains underutilized. Resource limitations necessitate triaging and intervention based on need and risk. Given the widespread use of the PATrev, we sought to explore the association between family psychosocial risk, symptom burden (as measured by the revised Edmonton Symptom Assessment System (ESAS-r)), and concerns (as measured by the Canadian Problem Checklist (CPC)). METHODS: Families (n = 87) with children ≤ 18 years of age (M = 11.72, male: 62.1%) on or off treatment for cancer were recruited from the Alberta Children's Hospital. One parent from each family completed the PATrev and the CPC. Participants 8-18 years of age completed the ESAS-r. RESULTS: Risk category (universal/low risk = 67.8%, targeted/intermediate risk = 26.4%, clinical/high risk = 5.7%) predicted symptom burden (F[2, 63.07] = 4.57, p = .014) and concerns (F[2, 82.06] = 16.79, p < .001), such that universal risk was associated with significantly lower symptom burden and fewer concerns. CONCLUSION: Family psychosocial risk is associated with cross-sectionally identified concerns and symptom burden, suggesting that resources might be prioritized for families with the greatest predicted need. Future research should evaluate the predictive validity of the PATrev to identify longitudinal concerns and symptom burden throughout the cancer trajectory.

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.

The effectiveness of a men-only supportive expressive group therapy intervention for psychosocial health outcomes in gastrointestinal cancer patients: a 6-month longitudinal study.

BACKGROUND: An increasing number of gastrointestinal cancer (GI) patients suffer from side effects of cancer treatment that can affect their mood states and quality of life. Despite its demonstrated effectiveness in female cancer patients, Supportive Expressive Group Therapy (SEGT) has not been tested in male cancer patients. The current study sought to examine the longitudinal effects of a professionally-led, men-only SEGT on mood states, coping, and quality of life (QoL) in male GI cancer patients. METHODS: A sample of male GI cancer patients (n = 31), at different stages of cancer treatment, was recruited from an ongoing, men-only biweekly GI cancer SEGT. Data were collected at baseline (before or near the beginning of group attendance) and at three months and six months follow-up. All study outcomes were patient-reported and included socio-demographic data as well as validated questionnaires: Profile of Mood States (POMS) for mood states, Functional Assessment of Cancer Therapy-General (FACT-G) for QoL, and Ways of Coping-Cancer Version (WOC) for coping. Linear mixed models were used to examine the change in outcomes over time. Effect sizes were estimated using Cohen's d. RESULTS: The Anxiety (p = .04; d = 0.70), Depression (p = .03; d = 0.93) and Anger (p = .04; d = 1.28) subscales of the POMS decreased between baseline and six months. Participants also reported improvements in coping through Distancing (distancing oneself from negative thoughts, being more accepting of the situation, and looking for positives) of the WOC (p = .04; d = 0.4) between baseline and six months. There was no change in any of the FACT subscales (QoL) over time. CONCLUSIONS: This is the first study to investigate the effects of a SEGT intervention in male cancer patients. Participation in the intervention was associated with improved mood states and coping in male GI cancer patients; however, there was no change in measures of QoL.

The Psycho-Oncologist-A Critical Role in a Cancer Center Survivorship Program.

Integration of psychosocial oncology services into urological practice can reduce the distress associated with a cancer diagnosis and treatment. Programmatic thinking can expand the services available to patients, moving beyond the psychiatry model of psychotherapy and medication management for mental health issues to programs of care that can support which improve the quality of life and wellbeing of cancer patients across their disease trajectory.

Ethical considerations in screening head and neck cancer patients for psychosocial distress.

RATIONALE: Head and neck cancer (HNC) patients and survivors are a particularly vulnerable group with disproportionately high levels of psychosocial distress. Untreated psychosocial distress among HNC patients has consistently been associated with poorer health and psychosocial outcomes. Screening for distress (SFD) allows health care providers to identify and monitor patient's distress, and when needed, to subsequently provide appropriate psychosocial supports that aim to reduce suffering and improve patients' overall well-being. However, despite mounting evidence for the benefits of SFD some oncology centers continue to neglect SFD in HNC patients and survivors, thereby depriving these patients of the opportunity to have their unmet psychosocial needs appropriately addressed. The present paper reviews SFD literature and explores ethical considerations in screening HNC patients and for distress. CONCLUSIONS: Screening HNC patients for distress and facilitating the alleviation of suffering are important steps in providing ethical care. HNC oncology administrators, surgical departments, and clinicians are urged to consider the implementation of SFD for HNC patients and to take the necessary steps in implementing SFD practices and psychosocial care.

"In the same boat"-a mixed-methods exploration of reasons why male gastrointestinal cancer patients joined a professionally led men-only cancer support group.

PURPOSE: Gastrointestinal (GI) cancer patients often suffer high rates of distress and social isolation, partially due to symptoms that are embarrassing or difficult to discuss with family or friends. Group support therapies mitigate illness-related stigma and standardization; however, men, in particular, are more averse to joining. Through an ongoing men-only GI cancer support group, this study sought to understand who joined the groups, what facilitated group uptake, and explore men's reasons for enrolling in the group. METHODS: A mixed-methods study design and analysis were used. A qualitative design utilizing open-ended, semi-structured interviews and thematic analysis were used; Theory of Planned Behavior (TPB) directed the inquiry towards facets of group uptake. Standardized measures were also used to assess distress, coping, and quality of life (QoL) and compared with normative values for cancer and general population. Data from qualitative and quantitative findings were triangulated. RESULTS: Participants included 35 male GI cancer patients, aged 28-72, at varying stages of illness and treatment. Themes related to group uptake and enrollment were endorsement; composition; and attitudes, and reasons for joining were learning new coping techniques and affiliations with similar others. Men's QoL and psychological distress scores were on par with cancer patient norms. The scores obtained from quantitative scales corroborated with our qualitative findings. CONCLUSIONS: Despite psychosocial, demographic, and clinical variations, participants were keen on joining a male-only Supportive-Expressive Therapy (SET) group to address their emotional, informational, and supportive care needs and express their solidarity for other patients. IMPLICATIONS FOR CANCER SURVIVORS: Findings bear clinical relevance for designing GI male-centered group formats that endorse men's needs and facilitate their accessibility to group support interventions.

Outcomes From a Patient-Centered, Interprofessional, Palliative Consult Team in Oncology.

Background: Palliative care aims to improve suffering and quality of life for patients with life-limiting disease. This study evaluated an interdisciplinary palliative consultation team for outpatients with advanced cancer at the Tom Baker Cancer Centre. This team traditionally offered palliative medicine and recently integrated a specialized psychosocial clinician. Historic patient-reported clinical outcomes were reviewed. There were no a priori hypotheses. Methods: A total of 180 chart reviews were performed in 8 sample months in 2015 and 2016; 114 patients were included. All patients were referred for management of complex cancer symptomatology by oncology or palliative care clinicians. Patients attended initial interviews in person; palliative medicine follow-ups were largely performed by telephone, and psychosocial appointments were conducted in person for those who were interested and had psychosocial concerns. Chart review included collection of demographics, medical information, and screening for distress measures at referral, initial consult, and discharge. Results: A total of 51% of the patient sample were men, 81% were living with a partner, and 87% had an advanced cancer diagnosis. Patients were grouped based on high, moderate, or low scores for 5 symptoms (pain, fatigue, depression, anxiety, and well-being). High scores on all 5 symptoms decreased from referral to discharge. Pain and anxiety decreased in the moderate group. All 5 low scores increased significantly. Sleep, frustration/anger, sense of burdening others, and sensitivity to cold were less frequently endorsed by discharge. Conclusions: Patients who completed this interdisciplinary palliative consult service appeared to experience a reduction in their most severe symptoms. Visits to patients during existing appointments or having them attend a half-day clinic appears to have reached those referred. With interdisciplinary integration, clinicians are able to collaborate to address patient care needs. Considerations include how to further integrate palliative and psychosocial care to achieve additional benefits and ongoing monitoring of changes in symptom burden.

Examining the sustainability of Screening for Distress, the sixth vital sign, in two outpatient oncology clinics: A mixed-methods study.

BACKGROUND: Research indicates that cancer patients experience significant multifactorial distress during their journey. To address this, cancer centers are implementing Screening for Distress programs; however, little is known about the sustainability of these programs. This study sought to examine the sustainability of a Screening for Distress program in 2 cancer clinics 6 months post implementation. METHODS: A mixed-methods cross-sectional design was utilized. To determine if screening rates, screening conversations and appropriate interventions occurred and the charts of 184 consecutive patients attending the head and neck or neuro-oncology clinics over a 3 week period were reviewed. To examine the barriers and facilitators of sustainability, 16 semi-structured interviews with administrators, physicians, and nurses were conducted. RESULTS: Of the 184 charts reviewed, 163 (88.6%) had completed screening tools. Of these 163, 130 (79.8%) indicated that a conversation occurred with the patient about the identified distress as reported on the screening tool. Of the 89 (54.6%) charts where the need for an intervention was indicated, 68 (76.4%) had an intervention documented. Six oncologists, 7 nurses, and 3 administrators were interviewed, and 5 themes which influenced the sustainability of the program emerged: (1) attitudes, knowledge, and beliefs about the program; (2) implementation approach; (3) outcome expectancy of providers; (4) integration with existing practices; and (5) external factors. CONCLUSIONS: This study suggests that Screening for Distress was largely sustained, possibly due to positive attitudes and outcome expectancy. However, sustainability may be enhanced by formally integrating screening with existing practices, addressing potential knowledge gaps, and ensuring engagement with all stakeholder groups.

2016 President's Plenary International Psycho-Oncology Society: challenges and opportunities for growing and developing psychosocial oncology programmes worldwide.

Consistent with the International Psycho-Oncology Society's (IPOS) vision and goals, we are committed to improving quality cancer care and cancer policies through psychosocial care globally. As part of IPOS's mission, upon entering "Official Relations" for a second term with the World Health Organization (WHO), IPOS has dedicated much attention to reaching out to countries, which lack formalized psychosocial care programmes. One of IPOS's strategies to accomplish this goal has been to bring psycho-oncology training programmes to low- and middle-income countries and regions. To this end, the IPOS Board approved a new position on the Board of Directors for a member from a low- to middle-income country (LMIC). The IPOS 2016 President's Plenary focused on challenges and opportunities that exist in growing and developing psychosocial oncology programmes worldwide. The plenary presentations highlight how IPOS and WHO have aligned their goals to help LMICs support cancer patients as an essential element of cancer and palliative care. IPOS country representatives are strongly supported in liaising with national health authorities and with WHO Country Representatives in LMICs. The plenary speakers discussed the role IPOS Federation has taken in building a global network of psychosocial leaders and the impact this had in assisting LMICs in meeting IPOS's psychosocial care objectives. The plenary highlighted the challenges of expanding psychosocial reach into these countries. One significant question remains: Can psychosocial guidelines be adapted to LMICs and regions?

Distress levels in patients with oropharyngeal vs. non-oropharyngeal squamous cell carcinomas of the head and neck over 1 year after diagnosis: a retrospective cohort study.

BACKGROUND: Human papillomavirus (HPV)-related cancers have been associated with different demographic profiles and disease characteristics than HPV-unrelated cancers in head and neck patients, but distress and other symptoms have not been compared. The aim of this study was to assess whether distress levels, fatigue, pain, anxiety, depression, and common psychological and practical problems differ between head and neck cancer patients with HPV-related vs. HPV-unrelated carcinomas (using oropharyngeal carcinoma (OPC) and non-OPC cancers as surrogates for HPV status). METHODS: Distress, depression, anxiety, fatigue, pain, and common problems were examined in 56 OPC and 90 non-OPC patients at 4 timepoints during the first year following diagnosis. Two-level hierarchical linear modeling was used to examine effects. RESULTS: The HPV-related OPC group was more likely to be younger (p = 0.05), Caucasian (p = 0.001), non-smokers (p = 0.01), earn more (p = 0.04), and present with more advanced stage (p < 0.0001). At baseline, OPC patients reported only higher pain scores (p = 0.01) than non-OPC patients. Total problems decreased more in the OPC group (p = 0.08) than the non-OPC group from baseline to 12-month follow-up. In both groups, scores on distress, depression, psychosocial problems, and practical problems decreased similarly over time. CONCLUSIONS: Despite a difference in the clinico-demographic characteristics of HPV-related vs. HPV-unrelated patients, only baseline pain levels and total problems over time differed between the two groups.

Lessons learned from the science of caring: Extending the reach of psychosocial oncology: The International Psycho-Oncology Society 2016 Sutherland Award Lecture.

In medicine, referral to a medical oncology specialty is based on recent history, physical examination, pathology, surgery reports, imaging, blood work, and the patient's vital signs. By contrast, referral to a psychosocial specialist has typically been based on the patients expressed request for psychosocial support or the health care team's observation of the patient's limited adjustment or poor coping with the diagnosis, treatment, or end-of-life distress. These observations are usually based on clinical acumen not on metrics. In psychosocial oncology, by committing to the science of caring and relying on the use of standardized tools to screen for distress, the multidisciplinary cancer care team assess, communicate, and intervene on what is measured. That is, health care providers can begin to address the patients' identified concerns. Branding distress as the 6th vital sign and incorporating screening for distress into standard cancer practice can be an effective strategy to challenging the resistance in implementation of psychosocial oncology in cancer care institutions. Accreditation agencies are endorsing the need to assess patient distress and better manage symptoms of distress as part of routine and standardized patient care. While many international organizations and societies support the importance of screening, implementing screening for distress still has a long way to go to be operationalized in many cancer care programs. Screening for distress when implemented does, however, create an opportunity for psychosocial oncology to extend its reach into cancer care programs and institutions.

Brief supportive-expressive group therapy for partners of men with early stage prostate cancer: lessons learned from a negative randomized controlled trial.

PURPOSE: The purpose of this paper is to report the results of a negative randomized controlled trial, which piloted brief supportive-expressive therapy (SET) for partners of men with prostate cancer, and to discuss lessons learned for future clinical trials. METHODS: Partners of men with newly diagnosed, non-metastatic prostate cancer were randomized to SET (n = 45) or usual care (n = 32). SET involved six weekly group sessions emphasizing emotional expression, social support, and finding meaning in the cancer experience. Measures of mood disturbance, marital satisfaction, and social support were administered to both partners and patients at baseline, post-program, and at 3- and 6-month follow-up. RESULTS: There were no significant differences between SET and the control group for either patients or their wives on any outcome. Regardless of group membership, partners reported improvements in total mood disturbance (p = .011), tension (p < .001), anger (p = .041), confusion (p < .001), state anxiety (p = .001), and emotional support (p = .037), and patients reported improvements in tension (p = .003), emotional support (p = .047), positive interaction support (p = .004), and overall social support (p = .026). CONCLUSIONS: Compared to the natural course of recovery, SET did not improve psychosocial outcomes for either men with prostate cancer or their wives. Methodological challenges experienced in implementing this trial yield valuable lessons for future research, including designing interventions relevant to unique problems faced by specific groups, being closely guided by previous research, and the potential utility of screening for distress as an inclusion criteria in intervention trials.

Disparities in psychosocial cancer care: a report from the International Federation of Psycho-oncology Societies.

BACKGROUND: The aim of the study was to understand the characteristics of the International Federation of Psycho-oncology Societies (FPOS) and possible disparities in providing psychosocial care in countries where psycho-oncology societies exist. METHOD: A survey was conducted among 29 leaders of 28 countries represented within the FPOS by using a questionnaire covering (i) characteristics of the society; (ii) characteristics of the national health care system; (iii) level of implementation of psycho-oncology; and (iv) main problems of psycho-oncology in the country. RESULTS: Twenty-six (90%) FPOS returned the questionnaires. One-third reported to have links with and support from their government, while almost all had links with other scientific societies. The FPOS varied in their composition of members' professions. Psychosocial care provision was covered by state-funded health services in a minority of countries. Disparities between countries arose from different causes and were problematic in some parts of the world (eg, Africa and SE Asia). Elsewhere (eg, Southern Europe and Eastern Europe), austerity policies were reportedly responsible for resource shortages with negative consequences on psychosocial cancer care. Half of FPOS rated themselves to be integrated into mainstream provision of care, although lack of funding was the most common complain. CONCLUSIONS: The development and implementation of psycho-oncology is fragmented and undeveloped, particularly in some parts of the world. More effort is needed at national level by strong coalitions with oncology societies, better national research initiatives, cancer plans, and patient advocacy, as well as by stronger partnership with international organizations (eg, World Health Organization and Union for International Cancer Control).

Evaluating the Impact of Provincial Implementation of Screening for Distress on Quality of Life, Symptom Reports, and Psychosocial Well-Being in Patients With Cancer.

BACKGROUND: Although a number of accreditation agencies and professional societies recommend routine screening for distress (SFD) for patients with cancer, it has been integrated very slowly into clinical practice. OBJECTIVES: This evaluation investigated the impact of a large-scale SFD intervention on patients' quality of life, symptom reports, and psychosocial well-being. The SFD intervention involved (1) completion of the SFD tool by patients, (2) discussion between patient and provider about the concerns indicated, and (3) provision of appropriate assessments/interventions based on priority concerns. PATIENTS AND METHODS: This quality improvement work included a pre-evaluation and postevaluation of the impact of implementation on patients' well-being. Patients in cohort 1 (N=740) were surveyed before implementation, whereas patients in cohort 2 (N=534) were surveyed 10 months after the implementation at 17 clinics province-wide. As part of the implementation, providers received training on assessing and responding to patient priority concerns with the standardized tool. RESULTS: No differences were seen in total score of quality of life between the cohorts. Fewer patients in cohort 2 than in cohort 1 reported health problems, including tiredness, drowsiness, poor appetite, nausea, anxiety, and poor well-being. Similarly, significantly fewer patients in cohort 2 endorsed problems relating to emotional, practical, informational, spiritual, social, and physical aspects of well-being. CONCLUSIONS: Results showed significantly improved psychological and physical symptoms and psychosocial well-being after routine SFD was implemented, suggesting that a large-scale SFD intervention is beneficial for patients when it is integrated into existing clinical practice and community resources.