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

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

Using the Delphi Method to Elucidate Patient and Caregiver Experiences of Cancer Care.

Objective: Identify the most salient elements of the head and neck cancer (HNC) care experience described by patients and caregivers in focus group interviews. Methods: Three focus groups of patients and caregivers were facilitated by research assistants and clinicians. Open-ended guiding questions captured/elicited aspects of care that were appreciated, warranted improvement, or enhanced communication and information. A four-step Delphi process derived consensus among focus group facilitators (n = 5) regarding salient discussion points from focus group conversations. Results: Seven salient themes were identified: (1) information provision, (2) burden related to symptoms and treatment side effects, (3) importance of social support, (4) quality of care at both hospital and provider levels, (5) caring for the person, not just treating cancer, (6) social and emotional impact of HNC, and (7) stigma and insufficient information regarding human papillomavirus-related HNC. Conclusion: Participants reported varying needs and support preferences, a desire for individualized communication, and to feel cared for as both a person and a patient. Findings illuminate the intricate details underlying high-quality, compassionate, person-centered HNC cancer care.

Feasibility, Acceptability, and Clinical Significance of a Dyadic, Web-Based, Psychosocial and Physical Activity Self-Management Program (TEMPO) Tailored to the Needs of Men with Prostate Cancer and Their Caregivers: A Multi-Center Randomized Pilot Trial.

BACKGROUND: Prostate cancer is the most common cancer diagnosis among men. Family caregivers (often female spouses) play a key role in ensuring patients' needs are met, frequently assuming their role with no formal training, which can contribute to a high burden. The purpose of this study was to pilot TEMPO-the first dyadic, Tailored, wEb-based, psychosocial and physical activity self-Management PrOgram for men with prostate cancer and their caregivers. METHODS: 49 men with prostate cancer and their caregivers were randomized to TEMPO or usual care. Baseline and follow-up questionnaires were completed to assess feasibility, acceptability, and clinical significance. A priori benchmarks for these outcomes were set. Thirteen exit interviews were conducted to further explore acceptability. RESULTS: Feasibility benchmarks were met with the exception for recruitment with on average 6.1 dyads recruited/month (benchmark: 8 dyads/month). Benchmarks of acceptability focused on attrition (<25%) and system usability, which were met. Using the strict criteria for adherence of 100% of the module viewed and participants spending at least 15 min on the module, 45% of participants were adherent. The clinical significance on anxiety and quality of life was supported for caregivers, and mostly supported for the men with prostate cancer. CONCLUSION: This pilot trial was successful, with minor modifications needed prior to a large trial.

A study protocol for a multicenter randomized pilot trial of a dyadic, tailored, web-based, psychosocial, and physical activity self-management program (TEMPO) for men with prostate cancer and their caregivers.

BACKGROUND: Prostate cancer predisposes patients and caregivers to a wide range of complex physical and psychosocial challenges, and interventions must incorporate a wide range of self-management strategies to help patients and their caregivers effectively cope with cancer challenges. To palliate this need, our team recently developed and evaluated the initial acceptability of a dyadic, Tailored, wEb-based, psychosocial, and physical activity self-Management PrOgram (TEMPO). TEMPO is a 10-week, interactive, web-based intervention consisting of five modules designed to help dyads manage their physical and psychosocial needs. It aims to teach dyads new self-management strategies and encourages them to increase their physical activity (PA) levels, mainly through walking and strength-based exercises. Initial acceptability evaluation of TEMPO revealed high user satisfaction, in addition to having a number of potential benefits for participants. After integrating suggested changes to TEMPO, the proposed pilot study aims to further test the acceptability and feasibility of TEMPO. METHODS: This study is a multicenter, stratified, parallel, two-group, pilot randomized control trial (RCT), where patient-caregiver dyads are randomized (stratified by anxiety level) to receive (a) TEMPO or (b) usual care. Participants (n goal = 40) are recruited across Canada at participating cancer centers and through self-referral (e.g., online recruitment). Patient inclusion criteria are (a) having received prostate cancer treatment within the past 2 years or scheduled to receive treatment, (b) identified a primary caregiver willing to participate in the study, and (c) has access to the Internet. Eligible caregivers are those identified by the patient as his primary source of support. Dyads complete a baseline questionnaire (T1) and another one 3 months later (T2) assessing various aspects of physical and emotional functioning (e.g., the Medical Outcomes Study (MOS) 12-item Short Form Health Survey (SF-12), the Hospital Anxiety and Depression Scale (HADS), and the Perceived Stress Scale (PSS)), self-management behaviors (e.g., the Health Education Impact Questionnaire (heiQ)), physical activity (the International Physical Activity Questionnaires (IPAQ) and the Multidimensional Self-efficacy for Exercise Scale (MSES)), and dyadic coping (the Dyadic Coping Inventory (DCI)). Dyads that used TEMPO are also asked to participate in a semi-structured exit interview exploring their overall experience with the program. DISCUSSION: This feasibility analysis will begin to develop the knowledge base on TEMPO's value for men with prostate cancer and their caregivers to inform a larger trial. TRIAL REGISTRATION: NCT04304196.

Patient and family financial burden associated with cancer treatment in Canada: a national study.

GOAL: To determine patient-reported financial and family burden associated with treatment of cancer in the previous 28 days across Canada. METHODS: A self-administered questionnaire (P-SAFE v7.2.4) was completed by 901 patients with cancer from twenty cancer centres nationally (344 breast, 183 colorectal, 158 lung, 216 prostate) measuring direct and indirect costs related to cancer treatment and foregone care. Monthly self-reported out-of-pocket-costs (OOPCs) included drugs, homecare, homemaking, complementary/ alternative medicines, vitamins/supplements, family care, accommodations, devices, and "other" costs. Travel and parking costs were captured separately. Patients indicated if OOPC, travel, parking, and lost income were a financial burden. RESULTS: Mean 28-day OOPCs were CA$518 (US Purchase Price Parity [PPP] $416), plus CA$179 (US PPP $144) for travel and CA$84 (US PPP $67) for parking. Patients self-reporting high financial burden had total OOPCs (33%), of CA$961 (US PPP $772), while low-burden participants (66%) had OOPCs of CA$300 (US PPP $241). "Worst burden" respondents spent a mean of 50.7% of their monthly income on OOPCs (median 20.8%). Among the 29.4% who took time off work, patients averaged 18.0 days off. Among the 26.0% of patients whose caregivers took time off work, caregivers averaged 11.5 days off. Lastly, 41% of all patients had to reduce spending. Fifty-two per cent of those who reduced spending were families earning < CA$50,000/year. CONCLUSIONS: In our Canadian sample, high levels of financial burden exist for 33% of patients, and the severity of burden is higher for those with lower household incomes.

Dignity therapy for patients with brain tumours: qualitative reports from patients, caregivers and practitioners.

BACKGROUND: Most individuals with brain tumours experience distress or cognitive impairment during the illness trajectory, potentially causing decreased quality of life, strain on interpersonal relationships and altered sense of self or of the world. Symptoms of brain tumour and treatment can cause increased reliance on others and decreased in sense of dignity. Dignity is an important consideration when caring for patients, as it can influence decisions at end-of-life. Dignity therapy (DT) is a therapeutic intervention that was developed for patients near the end of life. DT encourages the patient to reflect on the life lived, including important roles and sources of pride, resulting in the development of a 'Legacy Document'. DT has been shown to enhance quality of life and dignity, and reduce psychological and existential distress for patients at the end-of-life. There is little literature on the effectiveness of DT, or other quality of life interventions, in brain tumour populations; This paper reports on the feasibility of conducting DT with this population, and presents qualitative data gathered from patients with brain tumours who participated in DT, their caregivers, and their Dignity Therapists. METHODS: Participants were recruited from the Odette Cancer Centre in Toronto. One of five Dignity Therapists conducted the intervention; time data was logged. Immediately after the intervention, patient participants, their caregivers, and Dignity Therapists were sent an open-ended, self-report survey about their experience with DT. Qualitative content analysis was conducted by an impartial reviewer. Average time taken to conduct the intervention was determined. RESULTS: Fifteen out of the 17 recruited participants (88%) completed the intervention; 2 were unable to complete the intervention due to progressing disease. Qualitative data was categorized according to two main areas of interest: Acceptability and Impact. Four participants, 5 caregivers and 4 care providers completed the qualitative surveys. All 4 patient participants reported benefits of DT that related to communication and/or advanced care planning (ACP). Dignity therapists felt that the impact on their patients was positive, and reported satisfaction as a clinician. CONCLUSIONS: The low attrition rate for the intervention suggests that DT is feasible in this population, though the required time to complete DT might be difficult for healthcare practitioners to provide within the recommended timeframe for this therapy. Positive qualitative reports on the effect of DT from patients, caregivers and dignity therapists alike indicate that DT is a promising intervention for this demographic.

Acceptability and Usefulness of a Dyadic, Tailored, Web-Based, Psychosocial and Physical Activity Self-Management Program (TEMPO): A Qualitative Study.

Caregivers of men with prostate cancer report high burden, and there is a need to develop cost-effective programs to support them in their roles. This study reports on the acceptability of a dyadic, Tailored, wEb-based, psychosocial and physical activity (PA) self-Management PrOgram called TEMPO. TEMPO was accessed by a convenience sample of 19 men with prostate cancer and their caregivers (n = 18), as well as six health care professionals (HCPs). User feedback was gathered via semi-structured qualitative interviews. Data were analyzed using thematic analysis. Most dyads were satisfied with TEMPO, particularly with the dyadic feature of TEMPO, the focus on goal setting to integrate self-management, and the extensive health library. The patients and caregivers motivated each other as they worked through TEMPO. Most goals to achieve during TEMPO pertained to increasing PA, followed by learning physical symptom management. One unanticipated benefit of TEMPO for the dyads was improved communication. HCPs agreed that TEMPO was a novel approach to online cancer self-management and they echoed the benefits reported by dyads. Key suggestions for improving TEMPO were to reduce repetition, tailor content, add more exercise ideas, and have more printing options. This study provides a strong foundation on which to plan a larger trial.

Are we missing PTSD in our patients with cancer? Part I.

Posttraumatic Stress Disorder (PTSD) can be defined by the inability to recover from a traumatic event. A common misconception is that PTSD can only develop in circumstances of war or acute physical trauma. However, the diagnostic criteria of PTSD were adjusted in the Diagnostic Statistical Manual of Mental Disorders Fourth Edition (DSM-IV) to include the diagnosis and treatment of a life-threatening illness, such as cancer, as a traumatic stressor that can result in PTSD. The word 'cancer' is so strongly linked to fear, stigma, and mortality, that some patients are fearful to even say 'the C word'. Therefore, it is not surprising that patients may experience a diagnosis of cancer as sudden, catastrophic, and/or life-threatening. Cancer-related PTSD (CR-PTSD) can negatively affect a patient's psychosocial and physical well-being during treatment and into survivorship. Unfortunately, CR-PTSD often goes undiagnosed and, consequentially, untreated. This article provides a general overview of PTSD with cancer as the traumatic event in order to define CR-PTSD, and reviews the growing pool of literature on this topic, including prevalence, risk factors, characterization, and treatment of CR-PTSD. The purpose of this article is to spread awareness of this relatively newly defined and commonly missed disorder among patients with cancer to clinicians and patients alike.

Oncology nursing role in cancer-related PTSD-Part II.

Cancer-related posttraumatic stress disorder (CR-PTSD) is relatively newly defined, lacks clinician awareness and, therefore, often goes undiagnosed. Untreated CR-PTSD can be debilitating; negatively impacting all aspects of a patient's life throughout diagnosis, treatment, and into survivorship. Oncology nurses' frontline role, which includes caring for both patients' physical and psychosocial needs, and commonly forming a trusting relationship with patients, makes them ideal candidates for providing emotional support and assessing patients for risk or symptoms of CR-PTSD. In addition to a brief summary on the current nursing role in assessing and treating mental health disorders such as CR-PTSD, this article provides recommendations for how nurses can identify vulnerable patients, assess these patients for CR-PTSD and provide psychosocial support to those in need, as well as how hospitals can better equip oncology nurses to do so through training, education and supportive resources.

Compassion Fatigue in Surgical Trainees.

OBJECTIVE: Compassion fatigue (CF) is the profound sense of emotional exhaustion that care providers can experience as the result of helping others in distress. CF can contribute to burnout (BO), depression, and stress-related illness. While surgeons and surgical trainees may be at high risk for developing CF, it has not been adequately characterized or explored in this population. The objective of this study was to examine the prevalence and impact of CF in surgical trainees with a view to inform a management strategy. STUDY DESIGN AND SETTING: A mixed method study was conducted using survey and interview methods. An email survey including the Professional Quality of Life Scale Version 5, an instrument to assess CF, was sent to all trainees in the Department of Surgery at the University of Toronto. Survey data were analyzed descriptively and using one-sample t tests. Semistructured interviews were conducted with volunteered trainees. Data collection and analysis occurred iteratively and inductively using the constant comparison method. RESULTS: One hundred fifteen trainees completed the survey representing a 47% response rate. Ninety-nine respondents (40.7%) completed the Professional Quality of Life Scale tool. The mean score on the compassion satisfaction subscale was 36.9 (SD 6.7), on the BO subscale was 26.2 (SD 5.6), and on the secondary traumatic stress (STS) subscale was 21.2 (SD 6.3). The mean on the compassion satisfaction subscale was not statistically different from the population mean (p = 0.22). The means for the BO and STS scales were statistically higher in our study sample compared to the normative data (p < 0.0001 for each). Thematic qualitative findings indicated trainees experienced CF symptoms. Participants described systemic barriers to mitigating CF including workload and a cultural expectation to be unemotional at work. CONCLUSION: Surgical trainees report high levels of BO and STS and currently use informal coping strategies outside of their academic and hospital environments. Trainees are likely to welcome and benefit from an organized response to support their emotional health when facing difficult patient encounters.

Theories of Loss and Grief Experienced by the Patient, Family, and Healthcare Professional: a Personal Account of a Critical Event.

When a patient is diagnosed with cancer, a number of losses and grief processes occur. Theories and models of loss, grief, and mourning are explored for the patient, her family member, and the medical treatment team, through a personal reflection when treating a patient undergoing a course of radiation treatment in a large cancer center. Reflection on this event can be used to guide health care facilities to assess and develop support systems for patients, caregivers, and health care professionals to cope with loss and grief processes in a healthy and meaningful way.

Canadian consensus algorithm for erectile rehabilitation following prostate cancer treatment.

INTRODUCTION: The present descriptive analysis carried out by a pan-Canadian panel of expert healthcare practitioners (HCPs) summarizes best practices for erectile rehabilitation following prostate cancer (PCa) treatment. This algorithm was designed to support an online sexual health and rehabilitation e-clinic (SHARe-Clinic), which provides biomedical guidance and supportive care to Canadian men recovering from PCa treatment. The implications of the algorithm may be used inform clinical practice in community settings. METHODS: Men's sexual health experts convened for the TrueNTH Sexual Health and Rehabilitation Initiative Consensus Meeting to address concerns regarding erectile dysfunction (ED) therapy and management following treatment for PCa. The meeting brought together experts from across Canada for a discussion of current practices, latest evidence-based literature review, and patient interviews. RESULTS: An algorithm for ED treatment following PCa treatment is presented that accounts for treatment received (surgery or radiation), degree of nerve-sparing, and level of pro-erectile treatment invasiveness based on patient and partner values. This algorithm provides an approach from both a biomedical and psychosocial focus that is tailored to the patient/partner presentation. Regular sexual activity is recommended, and the importance of partner involvement in the treatment decision-making process is highlighted, including the management of partner sexual concerns. CONCLUSIONS: The algorithm proposed by expert consensus considers important factors like the type of PCa treatment, the timeline of erectile recovery, and patient values, with the goal of becoming a nationwide standard for erectile rehabilitation following PCa treatment.

The impact of automated screening with Edmonton Symptom Assessment System (ESAS) on health-related quality of life, supportive care needs, and patient satisfaction with care in 268 ambulatory cancer patients.

PURPOSE: We aimed to assess the impact of implementing Edmonton Symptom Assessment System (ESAS) screening on health-related quality of life (HRQoL) and patient satisfaction with care (PSC) in ambulatory oncology patients. ESAS is now a standard of care in Ontario cancer centers, with the goal of improving symptom management in cancer patients, yet few studies examine impact of ESAS on patient outcomes. METHODS: We compared ambulatory oncology patients who were not screened prior to ESAS site implementation (2011-2012), to a similar group who were screened using ESAS after site implementation (2012-2013), to examine between-group differences in patient HRQoL, PSC outcomes, and supportive care needs (Supportive Care Service Survey). Both no-ESAS (n = 160) and ESAS (n = 108) groups completed these measures: the latter completing them, along with ESAS, at baseline and 2 weeks later. RESULTS: After assessing the impact of implementing ESAS, by matching for potentially confounding variables and conducting univariate analyses, no significant between-group differences were found in HRQoL or PSC. There was significant improvement in symptoms of nausea/vomiting and constipation, after 2 weeks. Lower symptom burden with decreased ESAS scores was significantly correlated with increased HRQoL. There were no between-group differences in knowledge of/access to supportive care. CONCLUSIONS: Significant correlation between change in ESAS and HRQoL implies ESAS could usefully inform healthcare providers about need to respond to changes in symptom and functioning between visits. This study showed no impact of early-ESAS screening on HRQoL or PSC. Further research should explore how to better utilize ESAS screening, to improve communication, symptom management, and HRQoL.