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Objectives: Medical Assistance in Dying (MAiD) has been legal in Canada since June 2016. A person can receive MAiD if their suffering cannot be relieved under conditions that they consider acceptable. Informed consent requires that the person requesting MAiD has received all the information needed to make their decision; that is, medical diagnosis and prognosis, available treatments including palliative care. The evaluation of unbearable suffering is known to be challenging as suffering is often psychological, existential, and social in nature. While interventions to relieve suffering exist, it is unclear how suffering is assessed and addressed in the literature on MAiD practice. No scoping review exists on the topic in Canada. The aim of this study was to understand how the concept of suffering was approached within the Canadian MAiD grey (GL) and scientific (peer‐reviewed) literature (SL), specifically: 1‐ How suffering is defined and assessed in the context of MAiD in Canada and 2‐ Which interventions in response to suffering are recommended within the process of obtaining informed consent for MAiD and throughout the process of MAiD itself. Methods: A scoping review was conducted based on PRISMA‐SR guidelines. SL articles (N = 1027) were identified from a review of 6 databases and GL documents (N = 537) were obtained from the provinces of Quebec, Ontario and British Columbia. Documents were analyzed using NVivo with coding by two‐raters and continuous team discussions. Results: A multidimensional definition of suffering, akin to the concept of total pain, is used. The assessment of suffering is based upon patients' reports. Tools to aid in the assessment are not comprehensively covered. Specific interventions to address suffering were often focused on active listening and the management of physical symptoms. No specific interventions were mentioned and there was no reference to clinical practice guidelines in the grey literature to address other components of suffering. The use of a multidisciplinary approach is suggested without specifying the nature of involvement. Conclusions: Our review indicates that published guidelines of MAID assessments could include clearer structure around the assessment and management of suffering, with suggestions of tools that may help clarify types of suffering and reference to clinical practice guidelines and interventions to holistically attend to patient suffering with an attention on non‐physical symptoms. Guidelines would benefit from clearer explanations of how members of an interdisciplinary teams could be coherently coordinated. [ABSTRACT FROM AUTHOR]

Objective: Against medical advice, head and neck cancer (HNC) patients have been shown to continue to smoke and misuse alcohol post-diagnosis and treatment. This study aimed to better understand the barriers to and facilitators of health behavior change (HBC) in HNC patients.Method: We conducted nine focus groups following a standard protocol. Eligible patients were diagnosed less than three years previously with a primary HNC and selected using maximum variability sampling (gender, age, cancer stage, smoking, and alcohol misuse). Thematic analysis was conducted using NVivo 10 software.Results: Participants were mostly men (79%), 65 years of age (SD = 10.1), and married/common-law (52%, n = 15). Mean time from diagnosis was 19 months (SD = 12.3, range = 5.0-44.5), and most had advanced cancer (65.5%, n = 19). Participants provided a larger than anticipated definition of health behaviors, encompassing both traditional (smoking, drinking, diet, exercise, UV protection) and HNC-related (e.g., dental hygiene, skin care, speech exercises, using a PEG, gaining weight). The main emerging theme was patient engagement, that is, being proactive in rehabilitation, informed by the medical team, optimistic, flexible, and seeking support when needed. Patients were primarily motivated to stay proactive and engage in positive health behaviors in order to return to normal life and reclaim function, rather than to prevent a cancer recurrence. Barriers to patient engagement included emotional aspects (e.g., anxiety, depression, trauma, demoralization), symptoms (e.g., fatigue, pain), lack of information about HBC, and healthcare providers' authoritarian approach in counseling on HBC. We found some commonalities in barriers and facilitators according to behavior type (i.e., smoking/drinking/UV protection vs. diet/exercise).Significance Of Results: This study underlines the key challenges in addressing health behaviors in head and neck oncology, including treatment-related functional impairments, symptom burden, and the disease's emotional toll. This delicate context requires health promotion strategies involving close rehabilitative support from a multidisciplinary team attentive to the many struggles of patients both during treatments and in the longer-term recovery period. Health promotion in HNC should be integrated into routine clinical care and target both traditional and HNC-related behaviors, emphasizing emotional and functional rehabilitation as key components. [ABSTRACT FROM AUTHOR]

This article examines a large cohort of previously suicidal adolescents, identifying those that surpassed threshold criteria for borderline personality disorder (BPD), according to the Abbreviated Diagnostic Interview of Borderlines (Ab-DIB), and determining the stability, correlates and predictors of BPD from early-to-late adolescence. Two hundred and eighty-six youth (mean baseline age 14.6 years; SD 1.5), presenting consecutively to a metropolitan pediatric hospital emergency department for evaluation of suicidality, were assessed at initial consultation for Axis I and II disorders and demographic and clinical variables. Two hundred and twenty-nine (80 %) were re-assessed for those variables 4 years later and 204 (70.3 %) had complete data sets at recruitment and follow-up. Previously suicidal youths who met BPD threshold on the Ab-DIB at recruitment were distinguishable at baseline from those who did not in conduct disorder symptoms ( p < 0.003), lower levels of functioning ( p < 0.001), drug use ( p < 0.001), stressful life events ( p < 0.003) and family relations ( p < 0.001). The BPD diagnosis was consistent, according to this measure, at baseline and follow-up for 76 % of participants. Four groups with respect to borderline pathology (persisting, remitting, emerging and never) were identified (ICC = 0.603, 95 % CI = 0.40-0.78). Persistent BPD status was predictable by older age at presentation ( p < 0.01) and level of functioning ( p < 0.05). Eight percent were also suicidal at the 4-year follow-up. Using a self-report measure of BPD, we suggest that suicidal youth can indeed be diagnosed with the disorder at 14 years old, supporting the shift from DSM-IV to DSM-5, given what appears to be its temporal stability, differentiation of those suffering with considerable symptomatology or not, and predictors of its status in late adolescence. The low suicidality rate at follow-up indicates a good short-term prognosis. [ABSTRACT FROM AUTHOR]

Medical Assistance in Dying (MAiD) is a complex process involving the person seeking care and their relatives. MAiD involves physical, psychosocial and spiritual needs, and consequently the involvement of an interdisciplinary team is beneficial. Therefore, updating the knowledge and skills of healthcare and social services professionals is critical. An interdisciplinary team from Laval University (Quebec, Canada) has developed a continuous training program for all health care and social services professionals who could be involved in the care of persons who request MAiD and their loved ones. It is crucial to assess whether the objectives of the continuous training program are being met, especially since this new training addresses several complex issues (legal, ethical, and clinical). Bandura's self-efficacy theory has been widely used to develop scales for assessing the impact of training programs and identifying knowledge gaps. Bandura's theory states that feeling secure in one's self-efficacy leads to self-determined motivation. Although there are various scales intended to measure self-efficacy in palliative care, none include self-efficacy for participating in the process surrounding MAiD. As a result, we aim to create a bilingual (English-French) interdisciplinary scale to assess self-efficacy for participating in the process surrounding MAiD. The scale will allow decision-makers and researchers to identify current knowledge gaps. It will also be useful for assessing the impact of current and future training programs addressing this end-of-life practice. In this work in progress, we briefly introduce the training program and the future steps in the development and validation of the scale., Competing Interests: None to declare., (© 2023 Tapp, Plaisance, Boudreault, St-Pierre, Desbiens, Poitras, Lemay, Urrea, Lapointe, Henry, Bravo; licensee Synergies Partners.)

Cancers of the head and neck and their treatment can cause disfigurement and loss of functioning, with a profound negative impact on the person's self-image and psychosocial wellbeing. This can lead to experiences of shame and stigma, which are important targets for psychosocial interventions. Accurate measurement and identification of these problems enables clinicians to offer appropriate interventions and monitor patients' progress. This study aimed to validate the Canadian version of the Shame and Stigma Scale (SSS) among French- and English-speaking head and neck cancer patients. Data from 254 patients from two major Canadian hospitals were analysed. The existing four-factor structure of the SSS was supported, with the following subscales: Shame with Appearance, Sense of Stigma, Regret, and Social/Speech Concerns. The Canadian SSS showed adequate convergent and divergent validity and test-retest reliability. Rasch analysis suggested scale improvement by removing two misfitting items and two items with differential functioning between French- and English-speaking patients. The final 16-item scale version was an adequate fit with the Rasch model. The SSS provides more accurate measures for people with high levels of shame and stigma, and thus has utility in identifying patients with more severe symptoms who may be in need of psychosocial interventions.

Objective: The aim of this study was to develop and validate a patient-reported outcome measure to evaluate body image concerns in head and neck cancer (HNC) patients., Methods: Items were created using a combination of deductive (eg, US Food and Drug Administration Qualification of Clinical Outcome Assessments, literature review) and inductive approaches (eg, subject matter experts, HNC patients). Items were translated for use in both Canadian English and Canadian French using back-translation. A two-step empirical validation process using the Classical Test Theory (CTT) and Rasch Measurement Theory (RMT) was conducted with 224 and 258 HNC patients, respectively, having undergone disfiguring surgery within the past 3 years., Results: Analyses suggest two subscales for MBIS-HNC: social discomfort (10 items) and negative self-image (11 items). The McGill Body Image Concerns Scale-Head and Neck Cancer (MBIS-HNC) is reliable with high internal consistency (0.98), high test-retest reliability over a two-week period (ICC = 0.88), moderate to high convergent validity (range r = 0.43-0.81), and divergent validity (range r = 0.12-0.15). RMT was used in addition to CTT. Disordered thresholds led to the modification of the number of response options, and items were deleted based on differential item functioning and high local dependency. Unidimensionality of both subscales and supporting a total score was confirmed. The measure was however characterized by the presence of an important floor effect, confirmed with poor targeting as demonstrated by the person-item threshold distribution., Conclusion: Evidence gathered from our theory-driven validation study using CTT and RMT provides practitioners and researchers with a useful and easy to use self-report measure., (© 2018 John Wiley & Sons, Ltd.)

Objectives: No study systematically has investigated the supportive care needs of general head and neck cancer patients using validated measures. These needs include physical and daily living needs, health system and information needs, patient care and support needs, psychological needs, and sexuality needs. Identifying the unmet needs of head and neck cancer patients is a necessary first step to improving the care we provide to patients seen in our head and neck oncology clinics. It is recommended as the first step in intervention development in the Pan-Canadian Clinical Practice Guideline of the Canadian Partnership Against Cancer (see Howell, 2009). This study aimed to identify: (1) met and unmet supportive care needs of head and neck cancer patients, and (2) variability in needs according to demographics, disease variables, level of distress, and quality-of-life domains., Methods: Participants were recruited from the otolaryngology-head and neck surgery clinics of two university teaching hospitals. Self-administered questionnaires included sociodemographic and medical questions, as well as validated measures such as the Supportive Care Needs Survey-Short Form (SCNS-SF34), the Hospital Anxiety and Depression Scale (HADS), and the Functional Assessment of Cancer Therapy-General (FACT-G) and Head and Neck Module (FACT-H&N) (quality of life measures)., Results: One hundred and twenty-seven patients participated in the survey. 68% of them experienced unmet needs, and 25% revealed a clinically significant distress level on the HADS. The highest unmet needs were psychological (7 of top 10 needs). A multiple linear regression indicated a higher level of overall unmet needs when patients were divorced, had a high level of anxiety (HADS subscale), were in poor physical condition, or had a diminished emotional quality of life (FACT-G subscales)., Significance of Results: The results of this study highlight the overwhelming presence of unmet psychological needs in head and neck cancer patients and underline the importance of implementing interventions to address these areas perceived by patients as important. In line with hospital resource allocation and cost-effectiveness, one may also contemplate screening patients for high levels of anxiety, as well as target patients who are divorced and present low levels of physical well-being, as these patients may have more overall needs to be met.

This study investigated cancer portrayals in newspapers now and 20 years ago. Six major daily newspapers from regions across Canada were studied. All articles from a 3-month period in 2008 (n = 576) and 1988 or 1989 (n = 412) focusing on cancer were analyzed. Cancer is a more prevalent topic and is depicted in a more positive light in newspapers now when compared to 20 years ago. In 2008, the most common cancer-related themes were cancer research (27%), risk factors (26%), treatment (24%), education/prevention (20%), and fundraising events (19%). Compared to 1988/1989, in 2008, there was a significant decrease in articles covering the end of life and surgery, while there was a significant increase in articles portraying the senior population, male issues, individual stories depicting people suffering from cancer, the health care system, fundraising events, and ethics and law. The percentage of articles on psychosocial aspects of the cancer experience remained the same in 1988/1989 compared with 2008, with 16% of articles covering psychological aspects (vs. 17% in 2008), 5.6% social aspects (vs. 3.9% in 2008), and 0.2% spiritual aspects (vs. 0.5% in 2008). In 2008, few cancer articles spoke in-depth about palliative care (2.8%), issues concerning death and dying (5%), or bereavement (1%). Cancer newspaper reporting mostly focuses on the physical aspects of cancer rather than presenting a more holistic approach including psychosocial issues. Implications of the shifts in tone and content of newspaper reporting are discussed. We highlight the importance of promoting coverage of distress as the sixth vital sign in newspaper press so as to inform readers about the experience of cancer and the existence of psychosocial services designed to optimize quality of life.