Screening for distress in community settings.

Purpose: This project was designed to develop, refine and field-test a distress screening approach with survivors accessing community-based cancer support agencies. Methods: The project was conducted in phases including a literature review and focus groups with cancer survivors and community agency staff. Data were gathered to lay the foundation for building a subsequent development and implementation of a new screening approach suitable for community-based cancer support agencies to use in identifying psychosocial distress in their clients. Results: Standardized questionnaires used for distress screening approaches in clinical settings were not seen by cancer survivors as appropriate for community-based cancer support settings. A new screening approach was designed and implemented based on input from cancer survivors and staff in community-based agencies. The tool used in the distress screening approach focused on problems relevant to individuals in the community setting. If problems were identified, staff followed tailored care pathways to resolve them. Both patients and staff found the screening approach useful for quickly pinpointing problems and avenues for dealing with the issues. Conclusions: Screening for distress approaches can be useful in a community-based cancer support setting to identify individuals who are at greater risk for experiencing difficulties. Data from screening can be useful for agencies to report on their service effectiveness.

Long-term treatment outcomes in a First Nations high school population with opioid use disorder.

OBJECTIVE: To assess for long-term positive effects of buprenorphine treatment (BT) on opioid use disorder (OUD) at a Nishnawbe Aski Nation high school clinic. DESIGN: Postgraduation telephone survey of high school students between March 2017 and January 2018. SETTING: Dennis Franklin Cromarty High School in Thunder Bay, Ont. PARTICIPANTS: All 44 students who had received BT in the high school clinic during its operation from 2011 to 2013 were eligible to participate. MAIN OUTCOME MEASURES: Current substance use, BT status, and social and employment status. RESULTS: Thirty-eight of the 44 students who had received BT in the high school clinic were located and approached; 32 consented to participate in the survey. A descriptive analysis of the surveyed indicators was undertaken. Almost two-thirds (n = 20, 62.5%) of the cohort had graduated from high school, more than one-third (n = 12, 37.5%) were employed full time, and most (n = 29, 90.6%) rated their health as "good" or "OK." A greater percentage of participants who continued taking BT after high school (n = 19, 61.3%) were employed full time (n = 8, 42.1% vs n = 4, 33.3%) and were abstinent from alcohol (n = 12, 63.2% vs n = 4, 33.3%). Participants still taking BT were significantly more likely to have obtained addiction counseling in the past year than those participants not in treatment (n = 9, 47.4% vs n = 1, 8.3%; P = .0464). CONCLUSION: The study results suggest that offering OUD treatment to youth in the form of BT in a high school clinic might be an effective strategy for promoting positive long-term health and social outcomes. Clinical treatment guidelines currently recommend long-term opioid agonist treatment as the treatment of choice for OUD in the general population; they should consider adding youth to the population that might also benefit.

Validation of the MENQOL for use with women who have been treated for gynecologic or breast cancer.

PURPOSE: To conduct a psychometric evaluation of the MENQOL, a condition-specific, self-report instrument to assess menopausal symptoms in women with gynecologic and breast cancers. METHODS: Identify face and content validity of the MENQOL with experts, and reliability and construct validity with a group of women diagnosed with cancer who are suffering from treatment-induced menopause. RESULTS: Eighty-two women with treatment-induced menopause completed the MENQOL, EORTC-C30, and the SVQ. The MENQOL was shown to have good face and content validity, and acceptable reliability (homogeneity and test-retest) and validity (concurrent and construct). Additionally, 85.5% of the women reported experiencing hot flashes. However, the most bothersome symptoms were weight gain and fatigue (feeling worn out). IMPLICATIONS: The MENQOL can be used to assess treatment-induced menopausal symptoms in women diagnosed with breast or gynecologic cancer.

Understanding the full breadth of cancer-related patient costs in Ontario: a qualitative exploration.

OBJECTIVE: This research informs existing work by examining the full scope of out-of-pocket costs and lost income, patients' private insurance behaviors, and their overall management of finances during their cancer treatment. The intent was to gain a deeper understanding of patient circumstances and the related costs. METHODS: Participant qualitative interviews were conducted in person during outpatient clinic visits or by telephone and were recorded between June 2011 and July 2012. Interviews were transcribed verbatim and subjected to a descriptive qualitative analysis. The research team collaborated early in the process (after three subjects were enrolled) to develop a preliminary coding framework. The coding framework was modified to incorporate additional emerging content until saturation of data was evident. Transcripts were coded using the qualitative software NVivo version 9.0. RESULTS: Fifteen patients agreed to participate in the study and 14 completed the interview (seven breast, three colorectal, two lung, and two prostate). Consistent with existing published work, participants expressed concerns regarding expenses related to medications, complementary/alternative medicines, devices, parking and travel. These concerns were exacerbated if patients did not have insurance or lost insurance coverage due to loss of work. Although many acknowledged in hindsight that additional insurance would have helped, they also recognized that at the time of their diagnoses, it was not a viable option. Previously unidentified categorical costs identified in this study included modifications to housing arrangements or renovations, special clothing, fitness costs and the impact of an altered diet. CONCLUSION: We confirmed the results of earlier Canadian quantitative work. Additionally, cost categories not previously explored were identified, which will facilitate the development of an improved and more comprehensive quantitative questionnaire for future research. Many patients indicated that supplemental health insurance would have made their cancer journey less stressful, highlighting existing gaps in the government funded health care system.

Patient and staff assessment of an audiovisual education tool for head and neck radiation therapy.

The purpose of this study was to understand and compare patient and staff perceptions of a video-based preparatory education tool for head and neck radiotherapy. Patients and staff completed a questionnaire assessing their perceptions of whether the education tool was relevant, clear, complete and reassuring. Staff rated the video's accuracy and anticipated impact on future patient information needs. Demographic information was collected. Open-ended questions were used to elicit additional feedback. Quantitative responses from 50 patients and 48 staff were very positive and not significantly different between the two groups. Content analysis of the qualitative data provided insight into the information and approaches valued by patients and staff and how these differed. Staff members were more critical of the production quality and completeness of information related to procedures and treatment side effects. Patients valued seeing procedures acted out and desired more information about what these experiences would feel like and how to engage in self-care. Although staff-driven development may be an effective method of designing the content and approach of a preparatory education video, care should be taken to consider differences between patient and staff perceptions of information needs.

Moving the agenda forward for cancer patient navigation: understanding volunteer and peer navigation approaches.

Across Canada, individuals diagnosed with cancer have identified concerns about access to services before, during, and following treatment, highlighting a very real uncertainty that exists about where to turn for information and assistance. Cancer patient navigation programs are emerging as effective interventions, well-equipped to meet these patients' diverse needs. While many provinces have initiated professionally led navigation services, little is known about the potential for volunteer-led navigation. This article highlights pilot programs in British Columbia, Ontario, and Newfoundland, where volunteers are engaged as lay or peer providers of cancer patient navigation services. By describing the recruitment, training, and role of the navigators within each program, the paper underscores the capacity for unique programs to work within current care frameworks across distinct communities. These programs provide an innovative approach to overcoming barriers and augmenting access to supportive care for cancer patients and their family members.

Nurses' experiences caring for patients and families dealing with malignant bowel obstruction.

Malignant bowel obstruction (MBO) is a well-recognised complication of advanced abdominal and pelvic cancers. Often surgical intervention is not feasible, resulting in complex symptoms and an unpredictable course. Although symptom management is a crucial part of nursing care, psychosocial and emotional issues frequently emerge for patients and families. This qualitative study explored the perspectives of nurses from a palliative care unit, in-patient acute care oncology units, ambulatory cancer setting, and the community on their experiences of caring for patients with MBO and their families. Six individual interviews and two focus groups were conducted. Eight overarching messages were identified related to nurses' experiences. Highlights include aspects of patients' and families' emotional distress, and the nurse-patient relationship in relieving suffering. Nurses have an important and privileged role that involves identifying MBO signs and symptoms, having knowledge of treatment and symptom management options, and helping patients transition from a curative to a palliative philosophy of care.

A Canadian online survey of oncology nurses' perspectives on the defining characteristics and assessment of breakthrough pain in cancer.

This paper explores oncology nurses' recognition of breakthrough pain in cancer (BTPc), methods they used for identification and assessment, and their perception of the burden to patients. An online questionnaire was distributed to 688 oncology nurses across Canada, and 201 participated. Sixty-four per cent of nurses surveyed reported that 41% to 80% of their patients experience BTPc, but many were unsure of the basic characteristics of the profile of a BTPc episode. Although a minority of respondents (33%) reported they did not use pain assessment tools/guidelines to help diagnose BTPc, those who did largely endorsed their use. Survey findings support the debilitating impact of BTPc, but further education is needed to advance the quality and consistency in pain assessment.

Measuring trends in performance across time: providing information to cancer patients.

Providing relevant, up-to-date information is identified as a quality standard of cancer care. Cancer programs need to be able to evaluate whether they are meeting the standard and to monitor their performance on an ongoing basis. Routine collection of clearly defined data, using reliable and valid measures, provides cancer program leaders with dependable information upon which to make decisions and monitor trends in performance over time. This article describes one cancer centre's experience in using standardized data collection regarding provision of patient information. The Cancer Patient Information Importance-Satisfaction Scale has been administered routinely in an outpatient setting over eight years. The profile we create from the data assists us in making informed decisions about patient education initiatives.

A Canadian online survey of oncology nurses' perspectives on the management of breakthrough pain in cancer (BTPc).

This paper explores Canadian oncology nurses' perception of management of breakthrough pain in cancer (BTPc). An online questionnaire was distributed to 668 oncology nurses across Canada, and 201 participated. More nurses reported that patients used hydromorphone (99.5%), morphine (97.0%), codeine (88.1%), or oxycodone (88.1%) for BTPc, than fentanyl preparations (64.7%). Problems with opioid administration reported by nurses included failure to work quickly enough (35.7%), difficulty swallowing (16.6%), need for caregiver assistance (13.2%), mouth sores (12.6%) and dry mouth (11.5%). Although most nurses discussed BTPc management with their patients, the vast majority (72.2%) were not very satisfied with current treatment modalities. Effective dialogue with patients and access to educational resources/tools may help optimize therapy and enhance concordance with BTPc medications.

Perspectives of women about external breast prostheses.

As many as 90% of women who have undergone mastectomy or lumpectomy for breast cancer surgery will choose to wear a breast prosthesis. To date, there has been little systematic exploration of experiences and preferences related to wearing external breast prostheses, especially with new products. For this qualitative descriptive study, 24 women were interviewed regarding their perspectives about the conventional breast prosthesis and 19 about their perspectives regarding a newly available custom-designed breast prosthesis. Women spoke about difficulties obtaining information regarding available breast prostheses options; the awkwardness of being measured and fitted for a prosthesis, especially with seemingly untrained staff; challenges in wearing an external prosthesis; and how a prosthesis can foster increased confidence, enhanced body image and self-esteem, and a sense of normalcy. All recommended that women must make an individual decision about wearing a breast prosthesis and emphasized how important it is to have information about options early in the cancer journey. The study findings can guide oncology nurses in educating women about breast prostheses.

A performance measurement tool for cancer patient information and satisfaction.

Cancer programs need to monitor their performance related to providing patient information. A new measurement tool was designed to gather indicator data concerning the importance of selected information topics and satisfaction with what information they had received. Based on a mixed sample of 540 cancer patients, the reliability of the importance and satisfaction scales were acceptable (Cronbach's alpha 0.89 and 0.92, respectively). The newly designed Cancer Information Importance/Satisfaction Scale is a reliable measure and can be easily applied as a performance indicator.

Survivors teaching students: increasing awareness about ovarian cancer.

New evidence has emerged concerning the persistent presence of a combination of symptoms that can be indicative of ovarian cancer. Professionals need to be aware of this evidence and incorporate it into their practice. Ovarian Cancer Canada (OCC) has implemented an innovative program in selected Canadian universities, as a method to educate undergraduate medical and nursing students about ovarian cancer. Survivors Teaching Students has been offered to 3,620 undergraduate students. This article presents the evaluation of the program using pre and post session surveys. Overall, students reported a change in knowledge related to the progression of ovarian cancer, symptoms of ovarian cancer, risk factors for the disease, and perspectives about what a woman with ovarian cancer might feel on being diagnosed. Having survivors provide the classroom session brought "a face and a voice" to the issue of ovarian cancer for the students.

Evaluation of a workshop for survivors: Picking Up the Pieces.

As the cadre of cancer survivors grows, more information about the long-term impact of cancer and its treatment is becoming evident. Ovarian Cancer Canada (OCC) responded to identified needs of women who had been treated for ovarian cancer and developed a workshop program for survivors entitled, Picking Up the Pieces. This article describes the evaluation of the workshop, as it was offered to 170 survivors in eight sessions across Canada. The written surveys and in-depth interviews revealed the participants found the workshop very helpful in validating their experiences in coping as a survivor, connecting them with other survivors and a network of support, and providing practical tools to help them move forward to live the lives they envisioned. Cancer nurses are in ideal positions to encourage women to attend workshops designed for survivors. In addition, this program could serve as a model and be adapted for patients with other types of cancer.

Radical cystectomy for bladder cancer: a qualitative study of patient experiences and implications for practice.

Patients being treated for bladder cancer share issues in common with other cancer patients, but also experience issues that are unique to their surgical treatment. This study used a descriptive qualitative approach to explore the experiences of patients who had undergone radical cystectomy for bladder cancer Twenty-two participants were interviewed in-depth on one occasion and were invited to attend a focus group session following the analysis of the interview transcripts. Participants described the shock of their diagnosis, their lack of information about bladder cancer, the importance of clear communication with care providers, and the types of adjustments they had to make following surgery. Specifically, changes in bodily function, body image, sexual relationships, and intimacy presented challenges for these participants. Although there was a sense of acceptance about the treatment-related events, there were still significant adjustments required by individuals following their surgery. Information, open communication, and support from family and friends were seen as important factors in helping patients adjust after surgery. Patients require clear, concise and consistent information about their cancer, treatment options, and course of care. Nurses caring for patients following surgery for bladder cancer need to understand the unique needs of these patients.

Exploring Tobacco Use and Smoking Cessation Best Practices From the Perspectives of Individuals With Lung Cancer and Health Care Professionals.

BACKGROUND: Lung cancer patients who continue to smoke after diagnosis are at increased risk of treatment toxicity, residual/recurrent disease, future malignancies, and all-cause mortality. Guidelines including those from National Comprehensive Cancer Network and Cancer Care Ontario advocate for screening, counseling, and access to smoking cessation services for all cancer patients; however, barriers from both patient and health care professional (HCP) perspectives contribute to lack of implementation. OBJECTIVE: The objective of this study was to identify the different perspectives among patients and HCPs in how the promotion of person-centred approaches may be used when offering smoking cessation services to patients who are receiving care within a regional cancer centre. METHODS: Qualitative data were generated using various methods, including focus groups with HCPs and interviews with patients. In total, 16 HCPs participated in three focus groups: including nine radiation therapists, five registered nurses, one registered dietitian, and one physiotherapist. Of 55 patients accrued, 19 were interviewed. Both focus groups and interviews were audio recorded, and the recordings were transcribed verbatim. Transcripts were then analyzed using narrative thematic analysis to define and identify themes. RESULTS: The identified themes were categorized into three topic areas: knowledge (eg, impact of smoking on illness and why they should not smoke); individual decision to quit (eg, motivators), and the social unacceptability of smoking (eg, the public perception of smoking over the last 40 years). HCP-identified themes included identification of smokers, triggers to start a conversation, approach, gaps and barriers to cessation, rationale for cessation, and judgment. Patient-identified themes included knowledge, individual decision to quit, and the social unacceptability of smoking. CONCLUSION: Understanding patient and HCP perspectives on smoking cessation will help influence practice to ensure that patients are not judged, assumptions are not made, and individualized and person-centred care is provided. HCP awareness of these themes and the patient perspective may challenge assumptions and values.

Buprenorphine unobserved "home" induction: a survey of Ontario's addiction physicians.

BACKGROUND: Ontario patients on opioid agonist treatment (OAT) are often prescribed methadone instead of buprenorphine, despite the latter's superior safety profile. Ontario OAT providers were surveyed to better understand their attitudes towards buprenorphine and potential barriers to its use, including the induction process. METHODS: We used a convenience sample from an annual provincial conference to which Ontario physicians who are involved with OAT are invited. RESULTS: Based on 85 survey respondents (out of 215 attendees), only 4% of Ontario addiction physicians involved in OAT routinely used unobserved "home" buprenorphine induction: 59% of physicians felt that unobserved induction was risky because it was against "the guidelines" and 66% and 61% respectively believed that unobserved "home" induction increased the risk of diversion and of precipitated withdrawal. CONCLUSIONS: Ontario addiction physicians largely report following the traditional method of bringing in patients for observed in-office buprenorphine induction: they expressed fear of precipitated withdrawal, diversion, and going against clinical guidelines. The hesitance in using unobserved induction may explain, in part, Ontario's reliance on methadone.

Exploration of Families' Experiences Caring for Loved Ones With Advanced Ovarian Cancer.

Ovarian cancer is challenging, both physically and psychologically, because of the advanced nature of the disease at diagnosis, adverse effects of the disease and treatment, and impact on roles and responsibilities. The family plays an integral role in promoting and maintaining the health of family caregivers, as well as providing physical and emotional support. The purpose of this study was to explore the experience of family caregivers caring for their loved ones with advanced ovarian cancer. Thirteen family caregivers were interviewed. The analysis of the data revealed 4 significant challenges that characterized the caregiving experience over time: confronting the initial diagnosis, dealing with fluctuations in physical status, confronting a turning point, and facing decline and death. Woven throughout these challenges, family caregivers routinely described difficulties in accessing information and navigating the health care system, which caused them added concern and frustration.