Perspectives of Canadian health leaders on the relationship between medical assistance in dying and palliative and end-of-life care services: a qualitative study.

BACKGROUND: Medical assistance in dying (MAiD) was legalized in Canada in 2016, but coordination of MAiD and palliative and end-of-life care (PEOLC) services remains underdeveloped. We sought to understand the perspectives of health leaders across Canada on the relationship between MAiD and PEOLC services and to identify opportunities for improved coordination. METHODS: In this quantitative study, we purposively sampled health leaders across Canada with expertise in MAiD, PEOLC, or both. We conducted semi-structured interviews between April 2021 and January 2022. Interview transcripts were coded independently by 2 researchers and reconciled to identify key themes using content analysis. We applied the PATH framework for Integrated Health Services to guide data collection and analysis. RESULTS: We conducted 36 interviews. Participants expressed diverse views about the optimal relationship between MAiD and PEOLC, and the desirability of integration, separation, or coordination of these services. We identified 11 themes to improve the relationship between the services across 4 PATH levels: client-centred services (e.g., educate public); health operations (e.g., cultivate compassionate and proactive leadership); health systems (e.g., conduct broad and inclusive consultation and planning); and intersectoral initiatives (e.g., provide standard practice guidelines across health care systems). INTERPRETATION: Health leaders recognized that cooperation between MAiD and PEOLC services is required for appropriate referrals, care coordination, and patient care. They identified the need for public and provider education, standardized practice guidelines, relationship-building, and leadership. Our findings have implications for MAiD and PEOLC policy development and clinical practice in Canada and other jurisdictions.

"Walk me through the final day": A thematic analysis study on the family caregiver experience of the Medical Assistance in Dying procedure day.

BACKGROUND: Legalization of assisted dying is progressively expanding worldwide. In Canada, the Medical Assistance in Dying Act became law in 2016. As assisted dying regulations evolve worldwide, comprehending its subjective impact and broader consequences, especially on family members, becomes pivotal for shaping practice, policy, and training. AIM: The goal of this study is to understand the experience of family caregivers on the assisted dying procedure day. DESIGN: Qualitative, thematic analysis, research using semi-structured interviews. SETTING/PARTICIPANTS: Family caregivers of patients who received assisted dying in two hospitals in Canada were recruited. Interviews were conducted at least 6 months after patient death. Conceptual saturation was achieved after analyzing 18 interviews. RESULTS: While caregivers expressed gratitude for the availability of Medical Assistance in Dying, they also described the procedure day as potentially jarring and unsettling. We identified five aspects that shaped their experience: attuned support from the clinical team; preparation for clinical details; congruence between the setting and the importance of the event; active participation and ceremony; and pacing and timing of the procedure. Together, these aspects impacted the level of uneasiness felt by caregivers on the procedure day. CONCLUSIONS: This study emphasized the importance of a family-centered approach to delivering Medical Assistance in Dying. It underscored recognizing the needs of family caregivers during the procedure day and offering strategies to ease their experience. Healthcare providers in jurisdictions where assisted dying is legal or deliberated should consider the applicability of these findings to their unique context.

Assessing Fatigue in Patients Receiving Kidney Replacement Therapy Using PROMIS Computer Adaptive Testing.

RATIONALE & OBJECTIVE: Fatigue is a debilitating symptom for many patients receiving kidney replacement therapy (KRT). Patient-reported outcome measures can help clinicians identify and manage fatigue efficiently. We assessed the measurement characteristics of the Patient Reported Outcome Measurement Information System (PROMIS)-Fatigue Computer Adaptive Test (PROMIS-F CAT) in patients receiving KRT using the previously validated Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-F) questionnaire. STUDY DESIGN: Cross-sectional study. SETTING & PARTICIPANTS: 198 adults treated with dialysis or recipients of a kidney transplant in Toronto, Canada. PREDICTORS: Demographic data, FACIT-F scores, KRT type. OUTCOME: Measurement properties of PROMIS-F CAT T scores. ANALYTICAL APPROACH: Reliability and test-retest reliability were assessed using standard errors of measurement and intraclass correlation coefficient (ICC), respectively. Construct validity was assessed using correlation and comparisons across predefined groups expected to have different levels of fatigue. Receiver operating characteristic (ROC) curves were used to assess the discrimination of PROMIS-F CAT, with clinically relevant fatigue defined by a FACIT-F score of≤30. RESULTS: Of the 198 participants, 57% were male, the mean±SD age was 57±14 years; 65% had received a kidney transplant. Based on the FACIT-F score, 47 patients (24%) had clinically relevant fatigue. PROMIS-F CAT and FACIT-F were strongly correlated (ρ =-0.80, P<0.001). PROMIS-F CAT had excellent reliability (>0.90 for 98% of sample), and good test-retest reliability (ICC=0.85). The ROC analysis demonstrated outstanding discrimination (area under ROC=0.93 [95%, CI 0.89-0.97]). A PROMIS-F CAT cutoff score of≥59 accurately identified most patients with clinically relevant fatigue (sensitivity=0.83; specificity=0.91). LIMITATIONS: A convenience sample of clinically stable patients. FACIT-F items are a part of the PROMIS-F item bank, although there was minimal overlap with only 4 FACIT-F items completed in PROMIS-F CAT. CONCLUSIONS: PROMIS-F CAT has robust measurement properties with low question burden to assess fatigue among patients with KRT.

Two-step screening for depressive symptoms in patients treated with kidney replacement therapies: a cross-sectional analysis.

BACKGROUND: Systematic screening for depressive symptoms may identify patients who may benefit from clinical assessment and psychosocial support. Here we assess a two-step screening using ultrabrief pre-screeners [Edmonton Symptom Assessment Survey-revised Depression item (ESASr-D) or Patient Health Questionnaire-2 (PHQ-2)] followed by the Patient-Reported Outcomes Measurement Information System Depression questionnaire (PROMIS-D) to identify depressive symptoms in patients on kidney replacement therapies. METHODS: We conducted a cross-sectional study of adults (kidney transplant recipients or treated with dialysis) in Toronto, ON, Canada. We simulated various two-step screening scenarios where only patients above a pre-screening cut-off score on the ESASr-D or PHQ-2 would move to step 2 (PROMIS-D). Screening performance was evaluated by sensitivity, specificity and positive and negative predictive values using the Patient Health Questionnaire-9 (PHQ-9) as the referent. The average number of items completed by patients in different scenarios was reported. RESULTS: Of 480 participants, 60% were male with a mean age of 55 years. Based on PHQ-9, 19% of patients had moderate or severe depressive symptoms. Pre-screening with a PHQ-2 score ≥1 combined with a PROMIS-D score of ≥53 provided the best two-step results (sensitivity 0.81, specificity 0.84, NPV 0.95). Two-step screening also reduces question burden. CONCLUSIONS: A two-step screening using a PHQ-2 score ≥1 followed by a PROMIS-D score ≥53 has good sensitivity and specificity for identifying potentially significant depressive symptoms among patients on kidney replacement therapies. This approach has lower question burden. Screened-in patients will need further clinical assessment to establish a diagnosis.

Symptom screening with Targeted Early Palliative care (STEP) versus usual care for patients with advanced cancer: a mixed methods study.

PURPOSE: Although early palliative care is recommended, resource limitations prevent its routine implementation. We report on the preliminary findings of a mixed methods study involving a randomized controlled trial (RCT) of Symptom screening with Targeted Early Palliative care (STEP) and qualitative interviews. METHODS: Adults with advanced solid tumors and an oncologist-estimated prognosis of 6-36 months were randomized to STEP or symptom screening alone. STEP involved symptom screening at each outpatient oncology visit; moderate to severe scores triggered an email to a palliative care nurse, who offered referral to in-person outpatient palliative care. Patient-reported outcomes of quality of life (FACT-G7; primary outcome), depression (PHQ-9), symptom control (ESAS-r-CS), and satisfaction with care (FAMCARE P-16) were measured at baseline and 2, 4, and 6 months. Semi-structured interviews were conducted with a subset of participants. RESULTS: From Aug/2019 to Mar/2020 (trial halted due to COVID-19 pandemic), 69 participants were randomized to STEP (n = 33) or usual care (n = 36). At 6 months, 45% of STEP arm patients and 17% of screening alone participants had received palliative care (p = 0.009). Nonsignificant differences for all outcomes favored STEP: difference in change scores for FACT-G7 = 1.67 (95% CI: -1.43, 4.77); ESAS-r-CS = -5.51 (-14.29, 3.27); FAMCARE P-16 = 4.10 (-0.31, 8.51); PHQ-9 = -2.41 (-5.02, 0.20). Sixteen patients completed qualitative interviews, describing symptom screening as helpful to initiate communication; triggered referral as initially jarring but ultimately beneficial; and referral to palliative care as timely. CONCLUSION: Despite lack of power for this halted trial, preliminary results favored STEP and qualitative results demonstrated acceptability. Findings will inform an RCT of combined in-person and virtual STEP.

Medically assisted dying in Canada and unjust social conditions: a response to Wiebe and Mullin.

In the paper, titled 'Choosing death in unjust conditions: hope, autonomy and harm reduction,' Wiebe and Mullin argue that people living in unjust social conditions are sufficiently autonomous to request medical assistance in dying (MAiD). The ethical issue is that some people may request MAiD primarily because of unjust social conditions, not their illness, disease, disability or decline in capability. It is easily agreed that people living in unjust social conditions can be autonomous. Nevertheless, Wiebe and Mullin fail to appreciate that autonomy is only a necessary condition for MAiD. In addition to autonomy, one must decide that providing assisted dying to a patient because they are living in unjust social conditions is ethical. Central to making this ethical decision is the principle of non-maleficence, famously articulated as 'do no harm.' The authors admit that performing MAiD in response to unjust social circumstances is harmful, but they justify this harmful action by appealing to the principle of harm reduction. A fundamental flaw of their approach is that it relies on the legislative definition of intolerable suffering, which is based on circular reasoning and given that 99.2% of patients that have applied for MAiD satisfied this criterion, it is essentially equivalent to no standard/criterion. Canadian society is struggling with the ethical implications of its permissive MAiD programme, and, fundamental to this debate, will be determining the proper balance between autonomy and non-maleficence for people living in unjust social conditions.

The impact of COVID-19 on the experiences of patients and their family caregivers with medical assistance in dying in hospital.

BACKGROUND: The COVID-19 pandemic and its containment measures have drastically impacted end-of-life and grief experiences globally, including those related to medical assistance in dying (MAiD). No known qualitative studies to date have examined the MAiD experience during the pandemic. This qualitative study aimed to understand how the pandemic impacted the MAiD experience in hospital of persons requesting MAiD (patients) and their loved ones (caregivers) in Canada. METHODS: Semi-structured interviews were conducted with patients who requested MAiD and their caregivers between April 2020 and May 2021. Participants were recruited during the first year of the pandemic from the University Health Network and Sunnybrook Health Sciences Centre in Toronto, Canada. Patients and caregivers were interviewed about their experience following the MAiD request. Six months following patient death, bereaved caregivers were interviewed to explore their bereavement experience. Interviews were audio-recorded, transcribed verbatim, and de-identified. Transcripts were analyzed using reflexive thematic analysis. RESULTS: Interviews were conducted with 7 patients (mean [SD] age, 73 [12] years; 5 [63%] women) and 23 caregivers (mean [SD] age, 59 [11] years; 14 [61%] women). Fourteen caregivers were interviewed at the time of MAiD request and 13 bereaved caregivers were interviewed post-MAiD. Four themes were generated with respect to the impact of COVID-19 and its containment measures on the MAiD experience in hospital: (1) accelerating the MAiD decision; (2) compromising family understanding and coping; (3) disrupting MAiD delivery; and (4) appreciating rule flexibility. CONCLUSIONS: Findings highlight the tension between respecting pandemic restrictions and prioritizing control over the dying circumstances central to MAiD, and the resulting impact on patient and family suffering. There is a need for healthcare institutions to recognize the relational dimensions of the MAiD experience, particularly in the isolating context of the pandemic. Findings may inform strategies to better support those requesting MAiD and their families during the pandemic and beyond.

A Race to the End: Family Caregivers' Experience of Medical Assistance in Dying (MAiD)-a Qualitative Study.

BACKGROUND: The June 2016 legalization of medical assistance in dying (MAiD) provided an added layer of choice to end-of-life care in Canada. Family caregivers play an important role in patient end-of-life decision-making. They may experience unique psychological burden or distress associated with their role. However, we know little about the caregiver experience associated with patient MAiD requests and the nature of psychosocial supports caregivers require before, during, and following MAiD intervention. OBJECTIVE: The objective of this study is to better understand the caregiver experience of MAiD within the Canadian legal landscape following Bill C-14. DESIGN: Caregiver experience was examined based on qualitative, semi-structured interviews. PARTICIPANTS: A total of 22 caregivers of patients who had requested MAiD were interviewed. APPROACH: Transcripts were recorded, transcribed, and analyzed based on grounded theory methodology. KEY RESULTS: The caregiver experience of MAiD within the legal framework was found to be understood as a "race to the end," with the ultimate goal of creating an ideal dying experience for the patient while balancing a threat to capacity that would undermine their access to MAiD. Caregivers can be described within the overarching framework as either co-runners or onlookers. Sources of caregiver distress were linked to these roles. CONCLUSIONS: The "race to the end" theoretical model contributes new knowledge and understanding that can inform the development of tailored support services for caregivers, the impact of legislative changes on this population, and future research examining decision-making near end of life and the caregiver experience.

Screening for symptoms of anxiety and depression in patients treated with renal replacement therapy: utility of the Edmonton Symptom Assessment System-Revised.

PURPOSE: The Edmonton Symptom Assessment System-revised (ESASr) is widely used in clinical oncology to screen for physical and emotional symptoms. The performance of the anxiety and depression items (ESASr-A and ESASr-D, respectively) as screening tools have not been evaluated in patients treated with renal replacement therapy. METHODS: Kidney transplant recipients and patients on dialysis were recruited in Toronto. Patients were classified as having moderate/severe depression and anxiety symptoms using the established cut-off score of ≥ 10 on the Patient Health Questionnaire-9 (PHQ-9) and the General Anxiety Disorder-7 (GAD-7) questionnaires. RESULTS: This study included 931 participants; 62% male, mean age (SD) 55(16), and 52% White. All participants completed ESASr, however only 748 participants completed PHQ-9 and 769 participants completed GAD-7. Correlation between ESASr item scores and legacy scores were moderately strong (ESASr-D/PHQ-9: 0.61; ESASr-A/GAD-7: 0.64). We found good discrimination for moderate/severe depression and anxiety [area under the receiver operating characteristics curve (95% CI) ESASr-D 0.82(0.78-0.86); ESASr-A 0.87 (0.82, 0.92)]. The cut-off ≥ 2 for ESASr-D [Sensitivity = 0.76; Specificity = 0.77; Likelihood Ratio (LR) + = 3.29; LR - = 0.31] and ≥ 4 for ESASr-A (Sensitivity = 0.75; Specificity = 0.87; LR + = 5.76; LR - = 0.29) had the best combination of measurement characteristics. CONCLUSION: The identified ESASr-D and ESASr-A cut-off scores may be used to rule out patients without emotional distress with few false negatives. However, the low sensitivity identified in our analysis suggests that neither ESASr-D or ESASr-A are acceptable as standalone screening tools.

Phase II Trial of Symptom Screening With Targeted Early Palliative Care for Patients With Advanced Cancer.

BACKGROUND: Routine early palliative care (EPC) improves quality of life (QoL) for patients with advanced cancer, but it may not be necessary for all patients. We assessed the feasibility of Symptom screening with Targeted Early Palliative care (STEP) in a phase II trial. METHODS: Patients with advanced cancer were recruited from medical oncology clinics. Symptoms were screened at each visit using the Edmonton Symptom Assessment System-revised (ESAS-r); moderate to severe scores (screen-positive) triggered an email to a palliative care nurse, who called the patient and offered EPC. Patient-reported outcomes of QoL, depression, symptom control, and satisfaction with care were measured at baseline and at 2, 4, and 6 months. The primary aim was to determine feasibility, according to predefined criteria. Secondary aims were to assess whether STEP identified patients with worse patient-reported outcomes and whether screen-positive patients who accepted and received EPC had better outcomes over time than those who did not receive EPC. RESULTS: In total, 116 patients were enrolled, of which 89 (77%) completed screening for ≥70% of visits. Of the 70 screen-positive patients, 39 (56%) received EPC during the 6-month study and 4 (6%) received EPC after the study end. Measure completion was 76% at 2 months, 68% at 4 months, and 63% at 6 months. Among screen-negative patients, QoL, depression, and symptom control were substantially better than for screen-positive patients at baseline (all P<.0001) and remained stable over time. Among screen-positive patients, mood and symptom control improved over time for those who accepted and received EPC and worsened for those who did not receive EPC (P<.01 for trend over time), with no difference in QoL or satisfaction with care. CONCLUSIONS: STEP is feasible in ambulatory patients with advanced cancer and distinguishes between patients who remain stable without EPC and those who benefit from targeted EPC. Acceptance of the triggered EPC visit should be encouraged. CLINICALTRIALS: gov identifier: NCT04044040.

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.

Medical Assistance in Dying in patients with advanced cancer and their caregivers: a mixed methods longitudinal study protocol.

BACKGROUND: The legal criteria for medical assistance in dying (MAiD) for adults with a grievous and irremediable medical condition were established in Canada in 2016. There has been concern that potentially reversible states of depression or demoralization may contribute to the desire for death (DD) and requests for MAiD. However, little is known about the emergence of the DD in patients, its impact on caregivers, and to what extent supportive care interventions affect the DD and requests for MAiD. The present observational study is designed to determine the prevalence, predictors, and experience of the DD, requests for MAiD and MAiD completion in patients with advanced or metastatic cancer and the impact of these outcomes on their primary caregivers. METHODS: A cohort of patients with advanced or metastatic solid tumour cancers and their primary caregivers will be recruited from a large tertiary cancer centre in Toronto, Ontario, Canada, to a longitudinal, mixed methods study. Participants will be assessed at baseline for diagnostic information, sociodemographic characteristics, medical history, quality of life, physical and psychological distress, attitudes about the DD and MAiD, communication with physicians, advance care planning, and use of psychosocial and palliative care interventions. Measures will subsequently be completed every six months and at the time of MAiD requests. Quantitative assessments will be supplemented by qualitative interviews in a subset of participants, selected using quota sampling methods. DISCUSSION: This study has the potential to add importantly to our understanding of the prevalence and determinants of the DD, MAiD requests and completions in patients with advanced or metastatic cancer and of the experience of both patients and caregivers in this circumstance. The findings from this study may also assist healthcare providers in their conversations about MAiD and the DD with patients and caregivers, inform healthcare providers to ensure appropriate access to MAiD, and guide modifications being considered to broaden MAiD legislation and policy.

Testing terror management theory in advanced cancer.

Death anxiety is common in advanced cancer due to heightened mortality salience. We tested terror management theory (TMT) in this population (N = 305) by evaluating the buffering effect of the distal defenses (attachment security, meaning, self-esteem) on the impact of physical impairment (a proxy for mortality salience) on death anxiety. Patients with greater numbers of strong distal defenses reported lower death anxiety than those with no strong defenses or one strong defense. These findings support the relevance of TMT in individuals facing the actual threat of death and the need for further TMT research in such populations.

Measuring financial toxicity incurred after treatment of head and neck cancer: Development and validation of the Financial Index of Toxicity questionnaire.

BACKGROUND: The treatment of head and neck cancer (HNC) may cause significant financial toxicity to patients. Herein, the authors have presented the development and validation of the Financial Index of Toxicity (FIT) instrument. METHODS: Items were generated using literature review and were based on expert opinion. In item reduction, items with factor loadings of a magnitude <0.3 in exploratory factor analysis and inverse correlations (r < 0) in test-retest analysis were eliminated. Retained items constituted the FIT. Reliability tests included internal consistency (Cronbach α) and test-retest reliability (intraclass correlation). Validity was tested using the Spearman rho by comparing FIT scores with baseline income, posttreatment lost income, and the Financial Concerns subscale of the Social Difficulties Inventory. Responsiveness analysis compared change in income and change in FIT between 12 and 24 months. RESULTS: A total of 14 items were generated and subsequently reduced to 9 items comprising 3 domains identified on exploratory factor analysis: financial stress, financial strain, and lost productivity. The FIT was administered to 430 patients with HNC at 12 to 24 months after treatment. Internal consistency was good (α = .77). Test-retest reliability was satisfactory (intraclass correlation, 0.70). Concurrent validation demonstrated mild to strong correlations between the FIT and Social Difficulties Inventory Money Matters subscale (Spearman rho, 0.26-0.61; P < .05). FIT scores were found to be inversely correlated with baseline household income (Spearman rho, -0.34; P < .001) and positively correlated with lost income (Spearman rho, 0.24; P < .001). Change in income was negatively correlated with change in FIT over time (Spearman rho, -0.25; P = .04). CONCLUSIONS: The 9-item FIT demonstrated internal and test-retest reliability as well as concurrent and construct validity. Prospective testing in patients with HNC who were treated at other facilities is needed to further establish its responsiveness and generalizability.

The impact of attachment security on death preparation in advanced cancer: The role of couple communication.

OBJECTIVE: Attachment security protects psychological well-being in patients with advanced cancer, but its effect on death preparation in this population has not been demonstrated. We examined the relationship of attachment security to death preparation in advanced cancer and tested whether couple communication mediates this relationship and whether gender and age moderate this mediating effect, using longitudinal data from a psychotherapy trial. METHODS: Patients with advanced cancer who lived with a partner (Nbaseline = 289) completed measures of attachment security (attachment avoidance, attachment anxiety), couple communication, and death preparation (preparation for end of life, life completion) and attendant health involvement (relationship with healthcare provider). A moderated mediation model was evaluated at each time period (baseline, 3 months, and 6 months). RESULTS: Couple communication mediated the relationship of attachment security to preparation for end of life and life completion (b's = -.06 to -.10). Anxiety × Gender effects on baseline couple communication (P's = .016) indicated that women with greater attachment anxiety reported worse communication than their male counterparts. Couple-communication × Gender × Age effects on baseline preparation for end of life (P = .007-.020) suggested that women showed better preparation with better couple communication. Younger patients reported less preparation than older patients, especially with poorer communication, but their preparation increased with better communication, especially in younger men. CONCLUSIONS: Attachment security supports death preparation in advanced cancer partly through better couple communication. Couple-based psychotherapeutic interventions, especially for younger individuals and women with attachment anxiety, may facilitate constructive conversations and death preparation.

High prevalence of persistent emotional distress in desmoid tumor.

OBJECTIVE: Clinical experience suggests a high prevalence of emotional distress in patients with desmoid tumor (DT). We examine longitudinal Distress Assessment and Response Tool (DART) scores to estimate prevalence and persistence of distress, and compare cross-sectional data between DT and malignant sarcoma cohorts, to identify predictors of distress. METHODS: Patients with DT completed DART at: T1-diagnosis, T2-during, T3-<6 months, and T4-≥6 months, post-treatment. DART includes patient-reported outcome measures of physical symptoms (ESAS-r), depression (PHQ-9), anxiety (GAD-7), and social difficulties (SDI-21). Descriptive prevalence and persistence of anxiety, depression, and wellbeing are reported, and mixed model regression analyses determine predictors of distress. RESULTS: Between 2012 and 2018, a total of 152 DART screens from 94 patients with DT were completed (T1: n = 44, T2: n = 31, T3: n = 22, T4: n = 55). Patients had a mean age 40 years, 78% were female and DT locations were abdominal wall (48%), extremity (30%), and mesentery (22%). Moderate to severe ESAS-r scores (≥4) persisted at T4 for anxiety (20%), depression (13%), and poor wellbeing (31%). Compared to 402 patients with malignant sarcoma, patients with abdominal wall sited DT reported severe PHQ-9 and GAD-7 scores twice as frequently. Abdominal wall location, female sex, history of mood problems, and psychosocial concerns were significant predictors of anxiety, depression, and poor wellbeing in DT. CONCLUSIONS: Adults with DT experience persistently high emotional distress compared to patients with malignant sarcoma. Women with abdominal wall DT, prior mood, and current psychosocial concerns need early attention within multidisciplinary treatment settings to reduce persistent distress.

Integration of patient-reported outcomes (PROs) for personalized symptom management in "real-world" oncology practices: a population-based cohort comparison study of impact on healthcare utilization.

BACKGROUND: The use of patient-reported outcomes (PROs) for routine cancer distress screening is endorsed globally as a quality-care standard. However, there is little research on the integration of PROs in "real-world" oncology practices using implementation science methods. The Improving Patient Experience and Health Outcome Collaborative (iPEHOC) intervention was established at multisite disease clinics to facilitate the use of PRO data by clinicians for precision symptom care. The aim of this study was to examine if patients exposed to the intervention differed in their healthcare utilization compared with contemporaneous controls in the same time frame. METHODS: We used a PRE- and DURING-intervention population cohort comparison study design to estimate the effects of the iPEHOC intervention on the difference in difference (DID) for relative rates (RR) for emergency department (ED) visits, hospitalizations, psychosocial oncology (PSO), palliative care visits, and prescription rates for opioids and antidepressants compared with controls. RESULTS: A small significantly lower Difference in Difference (DID) (- 0.223) in the RR for ED visits was noted for the intervention compared with controls over time (0.947, CI 0.900-0.996); and a DID (- 0.0329) for patients meeting ESAS symptom thresholds (0.927, CI 0.869-0.990). A lower DID in palliative care visits (- 0.0097), psychosocial oncology visits (- 0.0248), antidepressant prescriptions (- 0.0260) and an increase in opioid prescriptions (0.0456) in the exposed population compared with controls was also noted. A similar pattern was shown for ESAS as a secondary exposure variable. CONCLUSION: Facilitating uptake of PROs data may impact healthcare utilization but requires examination in larger scale "real-world" trials.

A cross-sectional gender-sensitive analysis of depressive symptoms in patients with advanced cancer.

BACKGROUND: Patients with advanced cancer commonly report depressive symptoms. Examinations of gender differences in depressive symptoms in patients with advanced cancer have yielded inconsistent findings. AIM: The objective of this study was to investigate whether the severity and correlates of depressive symptoms differ by gender in patients with advanced cancer. DESIGN: Participants completed measures assessing sociodemographic and medical characteristics, disease burden, and psychosocial factors. Depressive symptoms were examined using the Patient Health Questionnaire, and other measures included physical functioning, symptom burden, general anxiety, death related distress, and dimensions of demoralization. A cross-sectional analysis examined the univariate and multivariate relationships between gender and depressive symptoms, while controlling for important covariates in multivariate analyses. SETTING/PARTICIPANTS: Patients with advanced cancer (N = 305, 40% males and 60% females) were recruited for a psychotherapy trial from outpatient oncology clinics at a comprehensive cancer center in Canada. RESULTS: Severity of depressive symptoms was similar for males (M = 7.09, SD = 4.59) and females (M = 7.66, SD = 5.01), t(303) = 1.01, p = 0.314. Greater general anxiety and number of cancer symptoms were associated with depressive symptoms in both males and females. Feeling like a failure (ß = 0.192), less death anxiety (ß = -0.188), severity of cancer symptoms (ß = 0.166), and older age (ß = 0.161) were associated with depressive symptoms only in males, while disheartenment (ß = 0.216) and worse physical functioning (ß = 0.275), were associated with depressive symptoms only in females. CONCLUSIONS: Males and females report similar levels of depressive symptoms but the pathways to depression may differ by gender. These differences suggest the potential for gender-based preventive and therapeutic interventions in this population.

Depression in the medically ill.

BACKGROUND: Depressive disorders are significantly more common in the medically ill compared to the general population. Depression is associated with worsening of physical symptoms, greater healthcare utilization and poorer treatment adherence. The present paper provides a critical review on the assessment and management of depression in the medically ill. METHODS: Relevant articles pertaining to depression in the medically ill were identified, reviewed and synthesized qualitatively. A systematic review was not performed due to the large breadth of this topic, making a meaningful summary of all published and unpublished studies not feasible. Notable studies were reviewed and synthesized by a diverse set of experts to provide a balanced summary. RESULTS: Depression is frequently under-recognized in medical settings. Differential diagnoses include delirium, personality disorders and depressive disorders secondary to substances, medications or another medical condition. Depressive symptoms in the context of an adjustment disorder should be initially managed by supportive psychological approaches. Once a mild to moderate major depressive episode is identified, a stepped care approach should be implemented, starting with general psychoeducation, psychosocial interventions and ongoing monitoring. For moderate to severe symptoms, or mild symptoms that are not responding to low-intensity interventions, the use of antidepressants or higher intensity psychotherapeutic interventions should be considered. Psychotherapeutic interventions have demonstrated benefits with small to moderate effect sizes. Antidepressant medications have also demonstrated benefits with moderate effect sizes; however, special caution is needed in evaluating side effects, drug-drug interactions as well as dose adjustments due to impairment in hepatic metabolism and/or renal clearance. Novel interventions for the treatment of depression and other illness-related psychological symptoms (e.g. death anxiety, loss of dignity) are under investigation. LIMITATIONS: Non-systematic review of the literature. CONCLUSION: Replicated evidence has demonstrated a bidirectional interaction between depression and medical illness. Screening and stepped care using pharmacological and non-pharmacological interventions is merited.

Could symptom burden predict subsequent healthcare use in patients with end stage kidney disease on hemodialysis care? A prospective, preliminary study.

Context: Patients treated with maintenance hemodialysis experience significant symptom burden resulting in impaired quality of life. However, the association of patient reported symptom burden and the risk of healthcare use for patients with end stage kidney disease on hemodialysis has not been fully explored.Objectives: To investigate if higher symptom burden, assessed by the Edmonton Symptom Assessment System-revised (ESASr), is associated with increased healthcare use in patients with end stage kidney disease on hemodialysis.Methods: Prospective, single-center, study of adult patients on HD. Participants completed the ESASr questionnaire at enrollment. Baseline demographic, clinical information as well as healthcare use events during the 12-month following enrollment were extracted from medical records. The association between symptom burden and healthcare use was examined with a multivariable adjusted negative binomial model.Results: Mean (SD) age of the 80 participants was 71 (13) years, 56% diabetic, and 70% male. The median (IQR) dialysis vintage was 2 (1-4) years. In multivariable adjusted models, higher global [incident rate ratio (IRR) 1.02, 95% confidence interval (CI) 1.00-1.04, p = .025] and physical symptom burden score [IRR 1.03, CI 1.00-1.05, p = .034], but not emotional symptom burden score [IRR 1.05, CI 1.00-1.10, p = .052] predicted higher subsequent healthcare use.Conclusions: Our preliminary evidence suggests that higher symptom burden, assessed by ESASr may predict higher risk of healthcare use amongst patients with end stage kidney disease on hemodialysis. Future studies need to confirm the findings of this preliminary study and to assess the utility of ESASr for systematic symptom screening.