Evans, William K. MD, FRCPC*; Ung, Yee C. MD, FRCPC†; Assouad, Nathalie BSc, MBA‡; Chyjek, Anna BSc, CCRA§; Sawka, Carol MD, FRCPC§‖
Lung cancer (LC), a predominantly smoking-related cancer, is a growing global health problem because of its high mortality rate. In Canada, which has a population of only 33 million, it was estimated that there would be 26,500 individuals diagnosed with LC in 2012, and 20,100 deaths.1 In both Canadian men and women, LC is the second-most common cancer after cancer of the prostate and breast. In Ontario, the poor 5-year survival rate of 16% is attributable to the fact that LC typically presents in an advanced stage, with 60% of non–small-cell and 84% of small-cell LCs diagnosed as either stage III or IV.2 The unique stigma associated with LC may also contribute to the poor survival outcomes because patients and their families tend to be less aggressive in seeking optimal care.3
Nevertheless, the picture is not entirely negative. In Ontario, there has been a 20% reduction in the smoking rate of the population from the early 1960s to 2000.4 Clinical trials have demonstrated a dramatic improvement in 5-year survivorship for some stages of surgically resected LC with the use of adjuvant chemotherapy.5 Modest survival improvements have been achieved with combined modality therapy for locally advanced cancer, and quality of life and overall survival have improved with palliative chemotherapy and good supportive care for stage IV LC.6 Advances in molecular oncology have identified subpopulations of patients who derive greater benefit with targeted therapies.7 Recently, evidence has been presented that LC mortality can be reduced with low-dose CT screening.8 Clearly, progress has occurred and more is imminent, but adoption of new approaches tends to be slow and uneven across large jurisdictions.
Undertaking Disease Pathway Management for Quality Improvement in Ontario
Cancer Care Ontario (CCO) is the provincial government agency with the mandate to improve the quality of cancer services and ensure that patients in Ontario receive the right care at the right time in the right location by the right care provider, at every step of the cancer journey. To improve quality in Ontario’s 14 regional cancer programs, CCO has used a defined performance improvement cycle on a programmatic basis, which includes active clinical engagement and funding levers supported by an integrated clinical/administrative accountability framework.
In 2008, with the support of senior management and the CCO Board of Directors, CCO launched a new approach to quality improvement—Disease Pathway Management (DPM)—designed to complement the existing specialty program-based approach. Besides supporting the mission and mandate of CCO, the goal of DPM is to develop, implement, and evaluate an integrated series of activities aimed at advancing system-wide improvements for a specific cancer type across the continuum of cancer control. Specifically, DPM focuses on ways to improve the quality and processes of care and the patient experience for each type of cancer.
Other jurisdictions have implemented disease-management strategies for quality improvement, with care pathways being the sole driver for quality improvement.9–12 CCO’s DPM program is unique in that it incorporates quantitative data from the pathways with qualitative inputs from multidisciplinary group discussions, to identify opportunities for improvement. The LC DPM was launched in 2009. This article describes how the LC DPM initiative was organized, the opportunities for improvement that were identified, and the early successes that have been achieved to date.
LC DPM, Phase 1: Identifying Priorities for Action
Clinical leadership for the DPM initiative was sought from within the Ontario thoracic oncology community, in accordance with CCO’s established approach of seeking clinical engagement in quality-improvement initiatives. Invitations were extended to two medical experts, who were the co-leads of the existing provincial LC disease site group, which produces clinical practice guidelines. These individuals had established credibility with their peers through their provincial leadership roles and had a network of care providers who could be engaged for the work.
The LC DPM co-Chairs invited a broad spectrum of multidisciplinary stakeholders from across the province and the cancer continuum to participate in the initiative. In total, 48 individuals agreed to participate, including clinical representatives from primary care, public health, occupational medicine, oncology, and supportive services, as well as patients and caregivers. At an introductory workshop, the participants were organized into four working groups to focus on the separate phases of the patient’s journey: prevention and screening/early detection; diagnosis; treatment; palliative care, end-of-life care, and survivorship. In addition, a patient and family advisory group was established. Over the course of 6 months, each multidisciplinary working group was asked to use their experience and the data provided by CCO to identify gaps in service provision and quality-of-care issues, which impacted patient satisfaction. The data that CCO was able to provide on aspects of LC management, included wait times for treatment, concordance of practice with guidelines, LC symptom burden, patient satisfaction, regional LC incidence, and smoking rates. The five working groups met for a total of 50 hours, and generated 17 priorities for action (Priorities).
In addition to identifying the Priorities, the clinical membership of the LC DPM team worked with CCO staff, to develop disease pathway maps (pathways) of recommended diagnostic procedures and treatment approaches for typical small-cell and non–small-cell LC patients. These were based to the extent possible on the practice guidelines developed through the provincial lung disease site group and CCO’s Program in Evidence-based Care. Links to the practice guidelines have been embedded in the pathway maps. Wherever evidence was not available, the pathways were informed by expert opinion. The pathways have become an important byproduct of the DPM work because they are now a valuable resource for CCO use in managing the performance of each of the province’s regions, planning new quality-improvement activities, promoting best practice, and the use of currently available resources (e.g., guidelines, symptom-management aids). Figure 1 depicts a portion of the lung diagnosis clinical pathway and the integration of best practice guidelines into the pathway. The complete pathway can be viewed on the CCO Web site.13
After identification of the Priorities, a provincial symposium was organized to share the Priorities with a larger LC community and to solicit feedback on how to move forward. Recognizing that it would be impossible to solicit input on all 17 Priorities in a single day, the LC DPM leadership team further prioritized the Priorities list, and identified eight topics to be discussed at the symposium (Table 1).
One hundred fifteen individuals attended the event, including frontline clinical experts involved in the diagnosis and care of LC patients, health care administrators, ministry of health representatives, patients, and caregivers. The interactive and multidisciplinary day yielded fruitful discussions regarding the relative importance of each priority and a set of concrete suggestions on the implementation of the eight Priorities.
A key output of this first phase of the LC DPM initiative was the production of a Priorities report, in which each of the identified Priorities from the working groups was summarized, along with the recommendations for implementation from the provincial symposium.
LC DPM, Phase 2: Sharing Priorities and Promoting Action
The second phase of the LC DPM focused on promoting the Priorities agreed on to Ontario’s 14 regional cancer programs to catalyze action against them. This included a series of regional engagement sessions, a provincial pilot project, and the provision of provincial funds to each region for the purpose of acting on an initiative of high priority in that particular region.
Regional engagement sessions
To share the Priorities more broadly and to catalyze local action, engagement sessions were scheduled in each of Ontario’s 14 regional cancer programs. The individuals invited to attend these sessions by each regional cancer program included local diagnostic imaging experts, thoracic surgeons, radiation and medical oncologists, primary-care and palliative medicine physicians, nurses, and those involved in smoking cessation. There was a deliberate focus on multidisciplinary attendance to promote cross-disciplinary discussions on the Priorities and potential actions in each region.
Sessions, led by one of the clinical co-Chairs and the program manager, included a presentation of the regional data covering the cancer control continuum (Table 3). The use of data as a conversation starter proved an effective way to achieve physician engagement. Although the physicians raised issues about the quality of some of the data or the time period it covered, the data were, nonetheless, effective in sparking discussions. Because each region had some areas where they excelled, and some other where there was opportunity for improvement, it was possible to both celebrate successes, and challenge participants to identify strategies for further improvements.
Wherever possible, data specific to the Priorities were presented. For example, data demonstrating a tight correlation between regional smoking rates and LC incidence highlighted the need for smoking-cessation programs, particularly in those areas of the province with the highest smoking rates. Data on the LC symptom burden obtained through a provincial initiative to capture the symptoms of LC patients at regional cancer centers, using the Edmonton Symptom Assessment System (ESAS), highlighted the need for dyspnea-management programs (Fig. 2).
When data specific to one of the Priorities were not available, related data were used to segue to the priority issue. For example, wait-time data for the interval from diagnosis to first treatment was used to discuss the patient experience and the need to make improvements in the diagnostic phase of the LC journey.
Throughout the regional presentations, the LC DPM co-Chairs provided anecdotes from their personal experiences in managing LC, and the program manager added information about current quality-improvement activities in LC or other cancers, which were underway within the province to stimulate ideas for local action. At the conclusion of each regional session, the Priorities report was reviewed and copies were left with the participants to stimulate further discussion at the regional level about quality-improvement initiatives.
Initial pilot:– Dyspnea management
In addition to the regional engagement sessions, the LC DPM leadership team decided to promote action against the Priority of dyspnea management. This Priority was selected because more than 60% LC patients in Ontario report some level of dyspnea,14 and an evidentiary review demonstrated that minimal nursing intervention is effective in improving LC patients’ dyspnea, World Health Organization performance status, and levels of depression.15
CCO held a funding competition and subsequently awarded six cancer centers with funds to develop and implement a 1-year dyspnea-management program. Participating centers were required to create a program that addressed both the biomedical and psychosocial needs of dyspneic patients. Although sites were free to set up dyspnea-management services as considered appropriate, all sites were required to collect and report on ESAS scores, quality of life (measured through the European Organization for Research and Treatment of Cancer instrument), and both pre- and post- enrollment patient satisfaction to evaluate the effectiveness of the various approaches being piloted.
On the basis of the successes achieved in these pilot sites, and current literature on dyspnea management, the DPM is in the process of developing a recommendations report that will promote the implementation of the best dyspnea-management practices. After completion of the report, a workshop will be held to transfer the knowledge obtained during the pilot projects and to provide an opportunity to discuss the successes and challenges encountered. This workshop will encourage further dyspnea-management initiatives, which would improve the quality and consistency of care for LC patients with dyspnea across Ontario.
Provincial improvement projects
To further support action against the Priorities, CCO made one-time funding available to each of the regions to undertake sustainable quality-improvement activities against locally relevant Priorities for lung and colorectal cancers. Funding was allocated to the regions using an existing funding transfer mechanism, with the amount of funds allocated to each region being proportional to the LC burden. Each region could use their discretion to decide on the allocation of the funds against the identified LC Priorities. As a condition of the funding, regions were required to submit a project proposal to CCO for approval, and once approved, regions were required to submit an interim and final report at 6 and 12 months, respectively. In total, 10 LC projects were funded.
LC DPM, Phase 3: –Measuring Results
The third phase of the DPM approach is focused on measuring the results of the initiative. This phase of the initiative is still in progress; however, some early achievements have been realized.
The dyspnea-management pilot projects demonstrated a statistically significant improvement in patients’ dyspnea as measured by ESAS, with 45% of patients with severe dyspnea scores reporting a moderate or mild score by their last visit, and 32% of patients with an initial moderate dyspnea score reporting a mild score by their last visit. Patients also reported high levels of satisfaction, feelings of empowerment, and an improved ability to continue with their daily activities. This pilot also resulted in the creation of new patient materials, including a video on how to manage dyspnea, which is posted on the CCO Web site.16
Of the 10 regional improvement projects focused on LC, four concentrated on smoking cessation, whereas others focused on patient education, resource use, and ESAS evaluation. Interim reports submitted to CCO show some initial successes. One region that proposed to improve their multidisciplinary LC case conferences, demonstrated a positive impact on patient treatment recommendations, whereas another region implemented a smoking-cessation program that has reached approximately 600 patients in 6 months. At the conclusion of these projects, final reports will be submitted and the learnings from each will be summarized by CCO’s provincial office staff and shared with all regional cancer programs to facilitate transfer and exchange of knowledge.
The LC DPM initiative resulted in the development of standardized patient information and provided an update to the Understanding Lung Cancer document produced by the patient representatives on the provincial LC disease site group. Exploration into provincial variance in guideline concordance is being examined through a provincial research project on guideline adherence led by McMaster University. The report produced will increase understanding of how clinical decisions are made and help identify the barriers and enablers to implementing practice guideline recommendations. The study has noted that the two common barriers were: slow referral processes and lack of organizational support for implementation of guideline recommendations by the administrative leadership. Results from this research will be used to guide future activities in knowledge transfer.
Perhaps the most significant accomplishment to date has been the creation of pathways depicting the recommended and evidence-based management of the diagnostic and treatment phases for small-cell and non–small-cell LC in Ontario. After extensive consultation, including presentations at provincial meetings, wide external consultation, and discussion with LC experts, the pathways were completed. The LC Diagnosis Pathway was the first DPM to be released publicly by CCO on its Web site, and the treatment pathways are also available now.17
By working with a team of patients, caregivers, patient education specialists, and a graphic designer and writer, DPM has begun to develop patient pathway maps. The LC Diagnosis Patient Pathway was recently completed and is now available on the CCO Web site18 and also through the Diagnostic Assessment Program Electronic Pathway solution. Work is currently underway on additional patient pathway maps. The goal of these pathways is to facilitate patient navigation and to improve patient and family member access to information and coordination of care across the trajectory of care, by providing a high-level overview flowchart, which would be easy to understand.
In addition to the early results achieved by the LC DPM initiative, LC became a focus for other program areas within CCO. The primary-care program undertook the development and publication of a clinical practice guideline targeted at the family medicine community, for the early identification and referral of patients suspected of having LC.19 It also led to the establishment of Diagnostic Assessment Programs for LC in every region of the province. The Positron Emission Tomography Steering Committee ensured access to positron emission tomography for those stages and types of LC where the evidence demonstrated clinical utility.20
The provincial symptom-management initiative also focused on the LC disease site. Early performance targets focused specifically on improving the symptom assessment of LC patients through the use of ESAS. Since the inception of the DPM initiative and start of the LC DPM, ESAS use rates by LC patients have gradually increased, allowing CCO to gain a better understanding of the symptom burden and impact (Fig. 2). The symptom-management guides that have been developed by the supportive care program have been helpful in supporting quality care for LC patients. The dyspnea management guide has been of particular relevance to LC.21 Finally, opportunities for reducing the burden of LC and improving outcomes for LC patients were spotlighted by Ontario’s Cancer Quality Council through its Cancer System Quality Index for 2 consecutive years, as a result of CCO’s focus on this disease.22
As the LC DPM initiative continues to mature, the focus will turn to performance measurement and management, which is a key pillar of CCO’s approach to quality improvement. The team will work to select and develop new metrics related to the Priorities, which will be used to measure the performance of the regional cancer programs. Developing measures to evaluate regional cancer program concordance with the clinical pathways, and their impact on the delivery of care, will also be a key focus. Finally, the team will work to share the learnings from the various regional quality-improvement projects with all regions of the province, and determine how best to report progress on the LC quality initiatives through the cancer system quality index.
DPM provides a focused and systematic approach by which to examine the performance of a cancer system, through the lens of the journey that is experienced by a patient with a particular type of cancer. CCO has been able to mount this large DPM initiative because of the support from the senior management team of Cancer Care Ontario, a dedicated DPM secretariat, strong clinical leadership, and broad engagement of service providers across the spectrum of cancer control. The identification of gaps in service or deficiencies in quality identified through the focused discussions of the five working groups, supported by data, and confirmed through a broad consensus workshop, provided a strong basis for action. Regional roadshows helped to accelerate the development of improvement projects and other initiatives to close service gaps. The provision of funding from CCO for the regional quality-improvement projects was critical. The focus on LC through the DPM initiative also stimulated other program areas within CCO, to direct organizational energy to LC-specific issues. As a result of this initiative, there is now a well-established mechanism by which CCO can engage other disease-specific groups in future DPM initiatives.
The disease-specific focus and multidisciplinary engagement of the LC DPM initiative has yielded significant early results for Ontario. The LC Diagnostic and Treatment Pathway Maps will serve as a one-stop shop for guidance on expectations for cancer care delivery, thus helping to ensure consistency of care across the regional cancer programs. Moving forward, CCO expects to see continued improvement in the early detection and care of LC patients and renewed efforts in smoking cessation.
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5. Winton T, Livingston R, Johnson D, et al. National Cancer Institute of Canada Clinical Trials Group; National Cancer Institute of the United States Intergroup JBR.10 Trial Investigators Vinorelbine plus cisplatin vs. observation in resected non-small-cell lung cancer. N Engl J Med. 2005; 352:2589–2597
8. The National Lung Screening Trial Research Team Reduced Lung-Cancer Mortality with Low-Dose Computed Tomographic Screening. N Engl J Med. 2011; 365:395–409
14. Cancer Care Ontario. Ontario Cancer Registry and Edmonton Symptom Assessment System databases, accessed by CCO Cancer Informatics. August 2009 .
15. Bredin M, Corner J, Krishnasamy M, Plant H, Bailey C, A’Hern R. Multicentre randomised controlled trial of nursing intervention for breathlessness in patients with lung cancer. BMJ. 1999; 318:901–904
22. Cancer Quality Council of Ontario Cancer System Quality Index 2012. (2012);
Available at http://www.csqi.on.ca/. Accessed August 16, 2012