Testicular cancer (TC) is one of the most prevalent cancers among young adult (YA) males. TC can have significant physical and psychosocial impacts on patients, however limited research has focused on the experiences of their young partners. Thus, the aim of this study was to explore the lived experiences of partners of individuals diagnosed with TC as YAs. This study used an interpretive phenomenological research design. Three focus groups with 4–5 participants per group were conducted with partners of individuals diagnosed with TC as YAs (n = 13; 100
BACKGROUND:The aim of this study was to understand the experiences of young men with a diagnosis of testicular cancer (TC) using a narrative approach, with the intention of informing models of care and support in clinical services. METHODS:TC patients were recruited to participate in one of four focus groups examining their lived experiences from diagnosis. Focus groups were recorded and transcribed and analyzed using a narrative approach. RESULTS:A total of 4 focus groups were held from March to May 2019, involving 21 participants. Participants were currently on treatment (n = 2), < 2 years from treatment completion (n = 7), or > 2 years from treatment completion (n = 12). Two overarching meta-themes were identified: Negotiating Identity (comprising "recovery, repair and control"; "breaking the news"; "threats to fertility and virility"; "multiple masculinities") and Needing to Adjust (comprising "trauma and post-traumatic growth"; "facing vulnerability"; "managing to cope"; "secrecy vs. privacy"). Shared themes relating to environments for support, conversations about cancer, and time stress were also identified. CONCLUSIONS:Despite the significant cure rates for testicular cancer, the psychosocial needs of patients diagnosed with TC are paramount and potentially long-lasting. Improved clinical care for these patients includes exploration of both physical and psychosocial concerns over multiple timepoints. Opportunities for peer support and mentorship may be essential to support these vulnerable patients.
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 (β from 0.086 to 0.231, p ≤ .001 to .002). Those in the MAID cohort reported significantly greater anxiety (β = −0.831, p = .044) and greater lack of appetite (β = −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.
Background: This study seeks to understand the functioning of a gastrointestinal (GI) men-only Supportive-Expressive Group Therapy (SEGT) program over time by exploring (1) men's lived experiences with group process and (2) perceived group impact relevant to supportive/expressive goals. Methods: A convenience sample of patients with GI cancer attending an ongoing, men-only GI cancer SEGT was interviewed at 3 and 6 months from enrollment. A qualitative study design with mixed inductive and framework thematic analysis was used. Open-ended, semistructured interviews directed the exploration of group experiences over time. SEGT goals framed the inquiry toward exploring the perceived impact of the group. Results: Twenty-three men were interviewed at 3 months and 13 men at 6 months of intervention. Men pointed to an overall global satisfaction with group process and subjects discussed. The SEGT model provided a sex sensitive, safe, and mutually supportive outlet for expressing and normalizing participants' feelings and emotions. Three central themes emerged relevant to group experiences: (1) the role of social comparison, (2) the role of supportive-expressive exchanges, and (3) the role of the group format, composition, and facilitation. Feeling heard and validated accelerated a sense of belonging and facilitated emotional disclosure. SEGT contributed to re-evaluation of life values/goals, mitigation of existential anxiety, and mood improvement. Conclusions: Group participants perceived the SEGT as effective in addressing and mitigating emotional and existential concerns. Perceived benefits were consistent with SEGT goals. The findings offer groundwork for developing men-centered cancer support groups that foster emotional exploration and expressive disclosure through validation and acceptance.
Supplemental Digital Content is Available in the Text. Abstract Background: Psychosocial care for oncology patients is now recognized as a critical aspect of care because it has a positive impact on patient outcomes. Various screening tools have been validated to objectively measure the levels of distress, such as the National Comprehensive Cancer Network distress thermometer. However, there is little evidence of its use in sub-Saharan Africa, where the cancer burden continues to increase. This study sought to evaluate the levels of psychological distress in patients with cancer and the impact of the COVID-19 pandemic. Methods: This was a single-center cross-sectional study among patients with a histological diagnosis of cancer attending the hemato-oncology and radio-oncology units at the Kenyatta National Hospital, a referral tertiary center. We used the National Comprehensive Cancer Network Distress Thermometer and Problem Checklist to define psychological distress, fear of COVID-19 scale, and Corona Anxiety Score to determine the level of fear and anxiety caused by COVID-19 given the study happened during the pandemic, and the Eastern Cooperative Oncology Group (ECOG) to assess the performance status. Results: Of the 361 patients, the median age was 54 years (interquartile range, 43–63), and most were female (70%). The leading cancer diagnosis was breast cancer (26%), followed by cervical cancer (24%), with most of the patients having advanced disease and 28% having ECOG 3. Most (80%) patients were able to continue with their treatment despite the COVID-19 pandemic; however, 71% had a high level of fear of COVID-19 but minimal anxiety symptoms based on Corona Anxiety Score. The mean distress thermometer score was 2.7 (SD, 2.6), with 30% having a high level of distress (4 or above). ECOG status was the only variable significantly associated with high levels of distress, with the strongest association observed in the highest ECOG status (ECOG 4: OR, 6.8 [95% CI, 2.8–16.6] P < .001). Transportation was the main problem in the practical domain (62%) while fears and worries in the emotional domain (46% and 49%, respectively), and pain (65%) were the main physical problems. Conclusions: One-third of patients experienced high levels of distress. These patients reported significant concerns, such as transportation, fears, worry, and pain, in the problem checklist. There is a need to incorporate screening for distress into our patient population to help identify these patients and institute appropriate interventions.
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.
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)). 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. 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.
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.
Now that the needs of those affected by cancer have been well documented, primarily because of biopsychosocial distress screening as the sixth vital sign, it is time to address how these multiple and complex needs can be addressed by organized teams of health care professionals. Internationally, psychosocial oncology and supportive care programs have had significant growth. In addition to the humanistic cancer care provided by treating physicians, the interdisciplinary nature of supportive care creates unique opportunities across institutions and settings and in low- and high-resourced countries to bring compassionate expertise to people affected by serious illness. Although growth has been uneven, the trajectory for the greater need of supportive care services is clear: patient need (aging populations, environmental degradation, unequal resource distribution related to the social determinants of health), limited workforce capacity, and acute concerns about rising health care costs. These trends are expected to only accelerate and are to be seen and utilized as strategic opportunities. There is a serious dearth of strategic information on how to create supportive care programs. This chapter focuses on the unifying principles and essential infrastructure that enables integrated interdisciplinary supportive care programs to grow and, more significantly, to create team cultures that alchemize diversity and conflict into programmatic and clinical excellence.
Abstract The principles of whole patient care in cancer and the evidence regarding the benefits of screening for distress provide the impetus for innovation in implementation of psychosocial oncology programs. This includes the creation of new ways of integrating psychosocial assessment in patient reported outcomes and linking this to models of interdisciplinary collaborative care. Screening for distress can itself promote engagement of patients and families/carers in their care. To achieve this, recognition of the broader interpersonal and social context of cancer and related concerns for patients in such screening practices is encouraged. This article will lay the foundation for the successful implementation of clinical distress screening programs and then outline strategies that have been demonstrated to be successful in program quality, growth, and resource preservation. A brief overview of historical foundations of screening for distress is provided along with presentation of examples of innovative practice, including evidence of broader benefits of such screening and future challenges to effective program development, along with including recommendations for implementation within cancer care services.
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.
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.
Abstract Background: The International Psycho-Oncology Society (IPOS) recognizes psychosocial cancer care as a universal human right. IPOS emphasized that distress should be measured as the 6th Vital Sign alongside temperature, blood pressure, pulse, respiratory rate, and pain. To date, >75 cancer care organizations and accreditation bodies have endorsed screening, monitoring, and treating the multifactorial symptoms of distress as an essential component to high-quality care. The degree to which this international commitment has translated into the integration of precision supportive care within clinical settings is unknown. Methods: Building upon a 2018 IPOS World Congress Symposium, this commentary provides 4 snapshots into the progress made toward integrating precision supportive care in India, Australia, Europe, and the United States. The commentary demonstrates the different approaches taken to develop screening practices or overcome barriers to comprehensive precision supportive care. Results: Although psychosocial cancer care is a universal right, service and patient barriers to implementation remain, such as: inadequate workforce distribution and service investment in psychosocial care; siloed teams and limited communication skills; and cultural challenges. Recurrent themes emerged which can be used to invigorate commitment to IPOS standards: ongoing capacity building of the international psycho-oncology community; supporting communication skills training and encouraging programmatic thinking within services; and advocating for ongoing investment in precision supportive care through evaluation and strong clinical leadership. Conclusions: In examining 4 unique settings, the commentary recognizes the geographic variation in health care resources and social contexts of cancer care alongside cultural perspectives on psychosocial distress, screening methods, and the value of precision supportive care.
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.
Abstract: Around 32–60% of breast cancer patients have high levels of distress related to the impact of their disease and treatment consequences on their lives. There is evidence that psychosocial care and interventions can reduce the emotional impact of cancer and improve the quality of life for women affected by breast cancer. Inequalities in cancer care across countries contribute to different outcomes for patients. Psychosocial morbidity associated with cancer adds to the cancer burden if left unaddressed. However, psycho-oncological services are irregularly provided across countries and regions and do not cover entire populations. To improve patient outcomes, it is necessary to integrate distress screening and psycho-oncological care into standard cancer care from diagnosis, across treatment through all phases of disease, and survivorship as a vital part of comprehensive high-quality cancer care. Psycho-oncology professionals are aware of the need and the evidence. Responsibility for improvements must rest with all health professionals, services, and administrators involved in cancer care. ‘Whole of patient care’ requires ‘whole of system’ response.
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.