Exploring the perspectives of patients about their care experience: identifying what patients perceive are important qualities in cancer care.

INTRODUCTION: Delivering person-centered care begins with understanding perspectives of individuals who are recipients of care about their experiences and what constitutes a "positive" experience. METHODS: This project explored views of individuals with cancer regarding their care experiences and identified aspects of care patients thought were important through a qualitative analysis of data from the Ambulatory Oncology Patient Satisfaction Survey (AOPSS). Permission was obtained from seven Canadian provinces to access de-identified written comments to a final open-ended question on the survey: Is there anything else you would like to tell us about your cancer care experience? The descriptive qualitative analysis was guided by two questions: (1) what is the nature of the written comments and (2) what are key ideas expressed about care experiences? Key ideas were collated across provinces to identify significant themes within the national sample. RESULTS: The sample included comments from 6232 individuals. A total of 42.5% comments were positive, 29.7% were negative, and 19.8% were mixed. Four broad themes were identified from the comments: (1) characteristics of a "positive" experience, (2) personal care, (3) interaction with health care providers, and (4) service delivery. Respondents cited being treated as a person with respect and dignity, clear communication, access to relevant and timely information, and care that takes their needs into account as important aspects. Communication, consistency, and ongoing interactions with staff were highlighted as essential elements of a positive experience, yet areas where improvements in care are necessary. CONCLUSION: Patients reported a range of aspects that contribute to positive and negative care experiences which can be used to guide quality improvement initiatives in cancer centers. Results underscore the importance of having data collection systems in place to ensure agencies and providers have timely feedback about patients' experiences and concerns in order to provide responsive and individualized care.

de Souza interprofessional practice cancer competency framework.

PURPOSE: As the demand in cancer care continues to increase, health systems require a workforce of highly educated specialists and generalists to provide continuity of care across settings. OBJECTIVES: Led by de Souza Institute in Canada, an interdisciplinary working group was formed to develop a competency framework with relevance across regulated health professionals involved in cancer care. METHODS: The working group was presented with results from a scoping review of national and international guidelines, standards, and competencies in oncology, as well as data from needs assessments on continuing education opportunities and oncology topics most relevant to clinicians. Fifty-one professionals from, e.g., family medicine, pharmacy, social work, psychology, occupational therapy, and nursing participated in seven focus groups. An additional 32 nurses participated in a nursing-specific needs assessment survey. Using modified Delphi technique, working group members conducted three iterative rounds to review data and built consensus on competency items in relation to three levels of expertise, from early learner/novice practitioner, advancing practitioner, to expert practitioner. RESULTS: A final consensus was reached for the selection of competencies that reflect optimal cancer care mapped into three levels of expertise, as well as knowledge, skills, and attitudes expected of each level. Examples for the competency for early learner/novice practitioner include the following: Have awareness of common ethical issues in cancer care (knowledge); demonstrate ability to discuss, educate, and counsel patients and their support persons(s) regarding preferences (skills); and appreciate the impact of culture, the sensitivity, and diversity of attitudes in relation to cancer (attitude). Expert practitioner examples include: recognition of need for, and ability to advocate for challenges involving equity and access in order to improve health outcomes (skill) and awareness of workplace complexities, such as provider roles, team functioning, and organizational environments affecting patient-practitioner relationships (attitude). CONCLUSION: The de Souza Interprofessional practice cancer competency framework provides a set of shared competencies and a novice to expert pathway for clinicians across disciplines and supports a more standardized learning and comprehensive approach in organizing professional development towards a coordinated, high quality, and person-centered care.

Experiences of adult cancer survivors in transitions.

PURPOSE: To understand the experiences of adult cancer survivors as they transition from the end of cancer treatment to follow-up care as a basis for developing actionable recommendations to integrate cancer care delivery and survivorship care. METHODS: A national survey was conducted in collaboration with ten Canadian provinces to identify unmet needs and experiences with follow-up for cancer survivors between 1 and 3 years post-treatment. Surveys were available in English and French and completed either on paper or on-line. Samples were drawn from provincial cancer registries and packages distributed by mail. RESULTS: A total of 40,790 survey packages were mailed out across the ten provinces and 12,929 surveys were completed by adults (age 30+ years), and 329 surveys were completed by adolescents and young adults (age 18 to 29 years) giving an overall response rate of 33.3%. For the purposes of this publication, the focus will be on the adult sample. In the adult cohort (age 30+ years), 51% of the sample were females, 60% were 65 years of age or older, and 77% had not experienced metastatic spread. Three-quarters reported their health as good/very good and 82% that their quality of life was good/very good. Overall, 87% experienced at least one physical concern, 78% experienced at least one emotional concern, and 44% experienced at least one practical concern. The average number of concerns reported for each domain ranged from 2.0 to 3.8. For those who sought help, a third experienced difficulty obtaining assistance or did not receive it. The most frequently cited reasons for not seeking help was that someone had told them what they were experiencing was normal. CONCLUSIONS: The results indicate that many adult survivors have concerns about physical, emotional, and practical issues but are not receiving help to reduce their suffering. It is imperative we take action to correct this current reality.

Building A High Quality Oncology Nursing Workforce Through Lifelong Learning: The De Souza Model.

AbstractCancer is one of the leading causes of death in the world. Along with increased new cases, cancer care has become increasingly complex due to advances in diagnostics and treatments, greater survival, and new models of palliative care. Nurses are a critical resource for cancer patients and their families. Their roles and responsibilities are expanding across the cancer care continuum, calling for specialized training and support. Formal education prepares nurses for entry level of practice, however, it does not provide the specialized competencies required for quality care of cancer patients. There is urgent need to align the educational system to the demands of the health care system, ease transition from formal academic systems to care settings, and to instill a philosophy of lifelong learning. We describe a model of education developed by de Souza Institute in Canada, based on the Novice to Expert specialty training framework, and its success in offering structured oncology continuing education training to nurses, from undergraduate levels to continued career development in the clinical setting. This model may have global relevance, given the challenge in managing the demand for high quality care in all disease areas and in keeping pace with the emerging advances in technologies.

Cancer Care Ontario's Systematic Symptom Screening Strategy: A Human-Centred Design Approach to Exploring System Gaps and Defining Strategies for the Future.

Cancer patients experience a high symptom burden throughout their illness. Quality cancer symptom management has been shown to improve patient quality of life and prevent emergency department use. Cancer Care Ontario introduced standardized symptom screening in Ontario, using the Edmonton Symptom Assessment System (ESAS) to facilitate patient reporting and management of symptoms. However, patient symptom information is not always sufficiently addressed. To address these gaps, patient and family advisors collaborated with clinicians, administrators and health system leaders from across the Province in a Symptom Management Summit to share perspectives and co-design context-specific solutions to improve care in their region.

Systematic review and meta-analysis of collaborative care interventions for depression in patients with cancer.

BACKGROUND: Previous systematic reviews have found limited evidence for the effectiveness of pharmacological and psychological interventions for the management of depression in patients with cancer. This paper provides the first meta-analysis of newer collaborative care interventions, which may include both types of treatment, as well as integrated delivery and follow-up. Meta-analyses of pharmacological and psychological interventions are included as a comparison. METHODS: A search of MEDLINE, EMBASE, PsycINFO, and the Cochrane Library from July 2005 to January 2015 for randomized controlled trials of depression treatments for cancer patients diagnosed with a major depressive disorder, or who met a threshold on a validated depression rating scale was conducted. Meta-analyses were conducted using summary data. RESULTS: Key findings included eight reports of four collaborative care interventions, eight pharmacological, and nine psychological trials. A meta-analysis demonstrated that collaborative care interventions were significantly more effective than usual care (standardized mean difference = -0.49, p = 0.003), and depression reduction was maintained at 12 months. By comparison, short-term (up to 12 weeks), but not longer-term effectiveness was demonstrated for both pharmacological and psychological interventions. CONCLUSIONS: Collaborative care interventions have newly emerged as multidisciplinary care delivery models, which may result in more long-term depression remission. This review also updates previous findings of modest evidence for the effectiveness of both pharmacological and psychological interventions for threshold depression in cancer patients. Research designs focusing on combined treatments and delivery systems may best further the limited evidence-base for the management of depression in cancer.

Patient and family experiences with accessing telephone cancer treatment symptom support: a descriptive study.

PURPOSE: Assess patient and family member experiences with telephone cancer treatment symptom support. METHODS: Descriptive study guided by the Knowledge-to-Action Framework. Patients and family members who received telephone support for a cancer treatment symptom within the last month at one of three ambulatory cancer programs (Nova Scotia, Ontario, Quebec) were eligible. An adapted Short Questionnaire for Out-of-hours Care instrument was analyzed with univariate statistics. RESULTS: Of 105 participants, 83 % telephoned about themselves and 17 % for a family member. Participants received advice over the telephone (90 %) and were advised to go to emergency (13 %) and/or the clinic (9 %). Two left a message and were not called back. Participants were "very satisfied" with the manner of nurse or doctor (58 %), explanation about problem (56 %), treatment/advice given (54 %), way call was handled (48 %), getting through (40 %), and wait time to speak to a nurse or doctor (38 %). The proportion "dissatisfied" or "very dissatisfied" for the above items was 4, 5, 9, 11, 10, and 14 %, respectively. Suggestions were shorter call back time, weekend access to telephone support, more knowledgeable advice on self-care strategies, more education at discharge, and shared documentation on calls to avoid repetition and improve continuity. CONCLUSIONS: Most patients and family members who responded to the survey were satisfied with telephone-based cancer treatment symptom support. Programs could improve telephone support services by providing an estimated time for callback, ensuring that nurses have access to and use previous call documentation, and enhancing patient education on self-care strategies for managing and triaging treatment-related symptoms.

Implementation of Symptom Protocols for Nurses Providing Telephone-Based Cancer Symptom Management: A Comparative Case Study.

BACKGROUND: The pan-Canadian Oncology Symptom Triage and Remote Support (COSTaRS) team developed 13 evidence-informed protocols for symptom management. AIM: To build an effective and sustainable approach for implementing the COSTaRS protocols for nurses providing telephone-based symptom support to cancer patients. METHODS: A comparative case study was guided by the Knowledge to Action Framework. Three cases were created for three Canadian oncology programs that have nurses providing telephone support. Teams of researchers and knowledge users: (a) assessed barriers and facilitators influencing protocol use, (b) adapted protocols for local use, (c) intervened to address barriers, (d) monitored use, and (e) assessed barriers and facilitators influencing sustained use. Analysis was within and across cases. RESULTS: At baseline, >85% nurses rated protocols positively but barriers were identified (64-80% needed training). Patients and families identified similar barriers and thought protocols would enhance consistency among nurses teaching self-management. Twenty-two COSTaRS workshops reached 85% to 97% of targeted nurses (N = 119). Nurses felt more confident with symptom management and using the COSTaRS protocols (p < .01). Protocol adaptations addressed barriers (e.g., health records approval, creating pocket versions, distributing with telephone messages). Chart audits revealed that protocols used were documented for 11% to 47% of patient calls. Sustained use requires organizational alignment and ongoing leadership support. LINKING EVIDENCE TO ACTION: Protocol uptake was similar to trials that have evaluated tailored interventions to improve professional practice by overcoming identified barriers. Collaborating with knowledge users facilitated interpretation of findings, aided protocol adaptation, and supported implementation. Protocol implementation in nursing requires a tailored approach. A multifaceted intervention approach increased nurses' use of evidence-informed protocols during telephone calls with patients about symptoms. Training and other interventions improved nurses' confidence with using COSTaRS protocols and their uptake was evident in some documented telephone calls. Protocols could be adapted for use by patients and nurses globally.

Cancer distress screening data: translating knowledge into clinical action for a quality response.

OBJECTIVES: The purpose of this paper is to summarize the use of the knowledge to action framework for adapting guidelines for practice and the evidence for effective implementation interventions to promote a quality response to cancer distress screening data. METHODS: We summarize progress in screening implementation in Ontario, Canada and the application of a systematic approach for adapting knowledge to practice and use of evidence-based knowledge translation interventions to ensure the uptake of best practices to manage distress. RESULTS: While significant progress has been made in the uptake of distress screening it is less clear if this has resulted in improvements in patient outcomes, i.e., reduced distress. The use of evidence-based knowledge translation strategies tailored to barriers at many levels of care delivery is critical to facilitate the uptake of distress screening data by the primary oncology team. SIGNIFICANCE OF RESULTS: There is a wealth of knowledge about the approaches that can be applied to translate knowledge into practice to improve psychosocial care and promote evidence-based distress management by the primary care oncology team. However, further implementation research is needed to advance knowledge about the most effective strategies in the context of cancer care.

The Ontario Psychosocial Oncology Framework: a quality improvement tool.

OBJECTIVE: To overview the newly developed Psychosocial Health Care for Cancer Patients and Their Families: A Framework to Guide Practice in Ontario and Guideline Recommendations in the context of Canadian psychosocial oncology care and propose strategies for guideline uptake and implementation. METHOD: Recommendations from the 2008 Institute of Medicine standard Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs were adapted into the Ontario Psychosocial Oncology (PSO) Framework. Existing practice guidelines developed by the Canadian Partnership against Cancer and Cancer Care Ontario and standards developed by the Canadian Association of Psychosocial Oncology are supporting resources for adopting a quality improvement (QI) approach to the implementation of the framework in Ontario. RESULTS: The developed PSO Framework, including 31 specific actionable recommendations, is intended to improve the quality of comprehensive cancer care at both the provider and system levels. Important QI change management processes are described as Educate - raising awareness among medical teams of the significance of psychosocial needs of patients, Evidence - developing a research evidence base for patient care benefits from psychosocial interventions, and Electronics - using technology to collect patient reported outcomes of both physical and emotional symptoms. CONCLUSIONS: The Ontario PSO Framework is unique and valuable in providing actionable recommendations that can be implemented through QI processes. Overall, the result will be improved psychosocial health care for the cancer population.

Core domains for a person-focused outcome measurement system in cancer (PROMS-Cancer Core) for routine care: a scoping review and Canadian Delphi Consensus.

OBJECTIVES: The objectives of this scoping review study were 1) to identify core domains and dimensions for inclusion in a person-focused and self-reported outcome measurement system for cancer and 2) to reach consensus among key stakeholders including cancer survivors on the relevance, acceptability, and feasibility of a core outcome set for collection in routine clinical care. METHODS: Following a scoping review of the literature, a Rand Delphi consensus method was used to engage key interdisciplinary decision makers, clinicians, and cancer survivors in reaching consensus on a core patient-reported outcome domain taxonomy and outcome measures. RESULTS: Of the 21,900 citations identified in the scoping review, 1,503 citations were included in the full article review (380 conceptual articles, 461 psychometric evaluation articles, and 662 intervention studies) and subjected to data abstraction and mapping. Final consensus was reached on 20 domains, related subdimensions, and 45 self-report measures considered relevant and feasible for routine collection in cancer by the Delphi panel (PROMS-Cancer Core). CONCLUSIONS: Standardization of patient-reported outcome data collection is key to assessing the impact of cancer and treatment on the person for population comparison and monitoring the quality of clinical care. The PROMS-Cancer Core taxonomy of domains and outcome measures can be used to guide the development of a patient-reported outcome information system for cancer.

Factors influencing job satisfaction of oncology nurses over time.

In this study, we tested a structural equation model to examine work environment factors related to changes in job satisfaction of oncology nurses between 2004 and 2006. Relational leadership and good physician/nurse relationships consistently influenced perceptions of enough RNs to provide quality care, and freedom to make patient care decisions, which, in turn, directly influenced nurses' job satisfaction over time. Supervisor support in resolving conflict and the ability to influence patient care outcomes were significant influences on job satisfaction in 2004, whereas, in 2006, a clear philosophy of nursing had a greater significant influence. Several factors that influence job satisfaction of oncology nurses in Canada have changed over time, which may reflect changes in work environments and work life. These findings suggest opportunities to modify work conditions that could improve nurses' job satisfaction and work life.

Cancer Care Ontario's experience with implementation of routine physical and psychological symptom distress screening.

OBJECTIVE: In late 2006, Cancer Care Ontario launched a quality improvement initiative to implement routine screening with the Edmonton Symptom Assessment System (ESAS) for cancer patients seen in fourteen Regional Cancer Centres throughout the province. METHODS: A central team: created a provincial project plan and management and evaluation framework; developed common tools and provided expert coaching and guidance, provincial data analysis, progress reporting and program evaluation. Regional Steering Committees and Improvement teams were accountable for planning and coordination within each region and supported by a funded Regional Improvement Coordinator. A hybrid model for quality improvement facilitated process improvements and uptake of screening. RESULTS: Challenges to implementation included: lack of consensus on the chosen screening tool, lack of guidance for assessment or management of high scores, concern of inadequate time or resources to address issues identified by the screening, data entry was labour intensive, resistance to change and challenges to the traditional care model. Essential components for success were: centralized project management, a person dedicated to implementation of the project locally, clinical champions, clearly identified aims, monthly regional data reporting and implementation of quality improvement methodologies with expectations for performance. To achieve screening aims many centres engaged all members of the team, examined the roles of the different members and reorganized workflow and responsibilities and changed booking times. In March 2010, approximately 25,000 ESAS's were completed in the regional cancer centres across Ontario, with 60% of lung cancer patients and almost 40% of all other cancer patients who visited the Regional Cancer Centres screened. CONCLUSION: Routine physical and psychological distress screening is possible within regional cancer centres. Although considerable effort and investment is required, it is worthwhile as it helps create a culture that is more patient-centered.

Screening for distress: responding is a critical function for oncology nurses.

The practice of routine screening for distress in cancer populations has been gaining worldwide support over the past several years with the conceptualization of distress as the sixth vital sign. Across Canada, experience with screening for distress is growing, as cancer facilities implement screening programs. Early learning from these efforts has emphasized the need for a programmatic approach and the importance of oncology nurses in screening and providing the initial response to distress. To date, little has been written from the nursing perspective about the oncology nursing role in a program screening for distress and responding to the identified patient concerns. This article describes the current thinking about distress; explores how screening for and responding to distress is integral to oncology nursing practice; and shares the early learning and experiences of cancer nurses in implementing screening for distress initiatives.

Determining resource intensity weights in ambulatory chemotherapy related to nursing workload.

Ontario cancer programs aim to deliver high-quality nursing care and treatment that is safe for patients and staff. The reality of health care is that financial constraints, inherent in the delivery of care, require that funding mechanisms count not only the cost of drugs, but factors such as pharmacy and nursing human resource costs. While some organizations have developed patient classification systems to measure nursing intensity and workload, these systems apply primarily to inpatient populations, and are fraught with numerous challenges, such as the need for nurses to document to justify the workload required for care. The purpose of this paper is to outline the methodology and engagement of nurses to develop regimen-based resource intensity weights that can be applied to ambulatory chemotherapy suites. The methodology included determination of workload related to nursing time to prepare, teach, counsel and assess patients, as well as time to gather supplies, access lines, monitor, manage adverse reactions, manage symptoms and document care. Resource intensity weights provide better measures of the complexity of care required by cancer patients in ambulatory settings.

Key components of intravenous chemotherapy labeling: a systematic review and practice guideline.

OBJECTIVE: To determine the necessary components and formatting of an intravenous chemotherapy label to maximize safe delivery and minimize errors. Date sources. The MEDLINE and EMBASE databases (up to April 2009) were searched for relevant evidence. Reference lists from retained studies were then searched for additional trials. An environmental scan was also conducted to locate other published and unpublished sources of information. Study selection. Relevant articles were selected and reviewed by one methodologist. Articles were selected for inclusion if they were published English language reports of Phases II or III randomized controlled trials, other comparative studies, single-arm studies, practice guidelines, or systematic reviews with or without meta-analyses, which related to the study question. MEDLINE and EMBASE searches yielded 685 potential studies of which 17 met the inclusion criteria. The environmental scan located one guideline. Three additional relevant studies were identified during the external review process. In total, 21 documents met the inclusion criteria. Data extraction. Data were extracted by one methodologist. Quality of systematic reviews was assessed using the AMSTAR tool. All other studies were evaluated based on study characteristics applicable to the particular study design. Data synthesis. The evidence collected and the consensus of expert opinion of Cancer Care Ontario's Chemotherapy Labeling Panel form the basis of a series of recommendations for the generation of intravenous chemotherapy labels including formatting, required information, and order of information. These guidelines inform the efficient, effective, and safe administration of intravenous chemotherapy. Illustrative examples are provided.

Courage, collaboration, complexity and chemotherapy safety: the view from the sharp end.

The Canadian oncology community was devastated by the news in August 2006 that a patient had died from an overdose of fluorouracil. Where we once thought our checks and balances ensured patient safety, we now knew they were not enough. Practice immediately began to change around the country. However, the incident report highlighted that there was much we still didn't know about safety issues in intravenous ambulatory chemotherapy safety in Canada. In response, an interdisciplinary, pan-Canadian team launched an 18-month exploratory study, resulting in a report identifying several safety issues and associated recommendations. This paper summarizes the key insights we have gathered for Canadian oncology nurses in being part of this study: that we need courage to come forward and disclose safety concerns; we should collaborate to come up with safety improvements that work for everyone; and we should strive to simplify our work at the sharp end by reducing complexity upstream and throughout the system.

Canadian cancer nurses' views on recruitment and retention.

AIM: The purpose of this study was to explore oncology nurses' perceptions about recruitment and retention. BACKGROUND: Competition among healthcare organizations to recruit and retain qualified nurses is a real-life challenge. Focusing attention on human resource planning in oncology is highlighted by both the worsening nursing shortage and cancer incidence. METHODS: A participatory action research approach was used and 12 focus groups with 91 cancer nurses were conducted across Canada to collect data about strategies that could improve recruitment and retention. RESULTS: Four themes emerged reflecting oncology nurses' beliefs and values about organizational practices that attract and retain nurses and they are as follows: (1) recognizing oncology as a specialty, (2) tacit knowledge no longer enough, (3) gratification as a retaining factor, and (4) relationship dependent on environment. CONCLUSIONS: Participants highlighted leadership, recognition and professional and continuing education opportunities as critical to job satisfaction and organizational commitment. IMPLICATIONS FOR NURSING MANAGEMENT: Recruitment and retention were viewed as a continuum where organizational investment begins with a well-developed orientation and ongoing mentorship to ensure knowledge development. The challenge for nurse leaders is to use the evidence generated from this study and previous studies to develop professional practice environments that facilitate the cultural changes needed to build and sustain a quality nursing workforce.

The relationship between nursing leadership and nurses' job satisfaction in Canadian oncology work environments.

BACKGROUND: Current Canadian oncology work environments are challenged by the same workforce statistics as other nursing specialties: nurses are among the most overworked, stressed and sick workers, and more than 8% of the nursing workforce is absent each week due to illness. AIM: To develop and estimate a theoretical model of work environment factors affecting oncology nurses' job satisfaction. METHODS: The sample consisted of 515 registered nurses working in oncology settings across Canada. The theoretical model was tested as a structural equation model using LISREL 8.54. RESULTS: The final model fitted the data acceptably (chi(2) = 58.0, d.f. = 44, P = 0.08). Relational leadership and physician/nurse relationships significantly influenced opportunities for staff development, RN staffing adequacy, nurse autonomy, participation in policy decisions, support for innovative ideas and supervisor support in managing conflict, which in turn increased nurses' job satisfaction. CONCLUSIONS: These findings suggest that relational leadership and positive relationships among nurses, managers and physicians play an important role in quality oncology nursing environments and nurses' job satisfaction. IMPLICATIONS FOR NURSING MANAGEMENT: Oncology nursing work environments can be improved by focusing on modifiable factors such as leadership, staff development and staffing resources, leading to better job satisfaction and hopefully retention of nurses.