Nimble Approach: fast, adapting, calculating and ethically mindful approach to managing colorectal cancer screening programmes during a pandemic.

OBJECTIVE: To describe a conceptual framework that provides understanding of the challenges encountered and the adaptive approaches taken by organised colorectal cancer (CRC) screening programmes during the initial phase of the COVID-19 pandemic. DESIGN: This was a qualitative case study of international CRC screening programmes. Semi-structured interviews were conducted with programme managers/leaders and programme experts, researchers and clinical leaders of large, population-based screening programmes. Data analysis, using elements of grounded theory, as well as cross-cases analysis was conducted by two experienced qualitative researchers. RESULTS: 19 participants were interviewed from seven programmes in North America, Europe and Australasia. A conceptual framework ('Nimble Approach') was the key outcome of the analysis. Four concepts constitute this approach to managing CRC screening programmes during COVID-19: Fast (meeting the need to make decisions and communicate quickly), Adapting (flexibly and creatively managing testing/colonoscopy capacity, access and backlogs), Calculating (modelling and actively monitoring programmes to inform decision-making and support programme quality) and Ethically Mindful (considering ethical conundrums emerging from programme responses). Highly integrated programmes, those with highly integrated communication networks, and that managed greater portions of the screening process seemed best positioned to respond to the crisis. CONCLUSIONS: The Nimble Approach has potentially broad applications; it can be deployed to effectively respond to programme-specific challenges or manage CRC programmes during future pandemics, other health crises or emergencies.

Cancer patients' experiences with immune checkpoint modulators: A qualitative study.

BACKGROUND: Minimal qualitative data exist on the experiences of cancer patients treated with immune checkpoint inhibitors or costimulatory antibodies. Understanding the day to day experiences of patients being treated with immune checkpoint modulators, and how these relate to their health-related quality of life, can inform future research and lead to better clinical decision-making and care. We report here the first in depth qualitative study to consider patients' diverse and complex experiences with immune checkpoint modulators, with a focus on side effects and how these impact daily life. METHODS: This single-center qualitative study was based on focus groups and semistructured interviews. Patients who were being treated or who had been treated with immune checkpoint modulators within the last year for a range of cancer diagnoses were recruited. Interpretive description informed our inductive, iterative approach to analysis. RESULTS: Eight themes were identified, characterizing the complexity of these patients' lived experiences: major categories of side effects experienced and how they impacted patient well-being; the heterogeneous nature of side effects experienced; living with uncertainty; reframing the meaning and severity of SEs; focus on survival, hope, and being positive; acceptance and adaptation; feeling supported; and faith in medical innovation. Throughout their accounts, participants highlighted the profound impact that immune checkpoint modulators had on their daily lives. CONCLUSION: This is the first in-depth qualitative study into patient accounts of their experiences of treatment with immune checkpoint modulators, related side effects, and how it impacted their daily lives. This research is an integral initial step in developing an instrument that will assess treatment-related side effects in patients treated with this form of therapy.

A "Tea and Cookies" Approach: Co-designing Cancer Screening Interventions with Patients Living with Low Income.

BACKGROUND: In our primary care organization, we have observed income gradients in cancer screening for our patients despite outreach. We hypothesized that outreach strategies could be improved upon to be more compelling for our patients living with low income. OBJECTIVE: To use co-design to adapt our current strategies and create new strategies to improve cancer screening uptake for patients living with low income. DESIGN: An exploratory, qualitative study in two phases: interviews and focus groups. PARTICIPANTS: For interviews, we recruited 25 patient participants who were or had been overdue for cancer screening and had been identified by their provider as potentially living with low income. For subsequent focus groups, we recruited 14 patient participants, 11 of whom had participated in Phase I interviews. APPROACH: To analyse written transcripts, we took an iterative, inductive approach using content analysis and drawing on best practices in Grounded Theory methodology. Emergent themes were expanded and clarified to create a derived model of possible strategies to improve the experience of cancer screening and encourage screening uptake for patients living with low income. KEY RESULTS: Fear and competing priorities were two key barriers to cancer screening identified by patients. Patients believed that a warm and encouraging outreach approach would work best to increase cancer screening participation. Phone calls and group education were specifically suggested as potentially promising methods. However, these views were not universal; for example, women were more likely to be in favour of group education. CONCLUSIONS: We used input from patients living with low income to co-design a new approach to cancer screening in our primary care organization, an approach that could be broadly applicable to other contexts and settings. We learned from our patients that a multi-modal strategy will likely be best to maximize screening uptake.

Treatment preferences of patients with relapsed and refractory multiple myeloma: a qualitative study.

BACKGROUND: Multiple myeloma is a haematological malignancy characterized by significant morbidity and mortality. This study sought to develop an in-depth understanding of patients' lived experiences of relapsed or refractory multiple myeloma (RRMM) and its treatment, and to identify which features of treatment were most important to them. METHODS: Qualitative interviews and focus groups (FGs) were conducted with 32 people living with RRMM across Canada. In Phase 1, interviews focused on participants' accounts of their experiences with the disease and its treatment and laid the groundwork for the FGs (Phase 2). The FGs developed a deeper understanding of patients' treatment priorities. Interview and FG transcripts were coded for emergent themes and patterns. RESULTS: The interviews identified important side effects that had significant impacts on patients' lives, including physical, cognitive, and psychological/emotional side effects. Participants also identified specific treatment features (attributes) that were important to them. These were compiled into a list and used in the FGs to understand patients' priorities. Higher prioritized attributes were: life expectancy, physical and cognitive side effects, and financial impact. Mode of administration, treatment intervals, psychological side effects, and sleep/mood effects were identified as lower priorities. CONCLUSIONS: RRMM and its treatments impact importantly on patients' quality-of-life across a range of domains. Patients prioritized treatment features that could enhance life expectancy, minimize side effects and offset financial burdens. IMPLICATIONS FOR CANCER SURVIVORS: A clear articulation of patient priorities can contribute to efforts to design treatment with patients' concerns in mind, thereby promoting a more patient-centered approach to care.

A framework to build capacity for a reflex-testing program for Lynch syndrome.

PURPOSE: Lynch syndrome (LS) is the most common inherited cause of colorectal cancer. Although testing all colorectal tumors for LS is recommended, the uptake of reflex-testing programs within health systems has been limited. This multipronged study describes the design of a provincial program for reflex testing in Ontario, Canada. METHODS: We recruited key stakeholders to participate in qualitative interviews to explore the barriers and facilitators to the implementation of a reflex-testing program. Data were analyzed in an iterative manner, key themes identified, and a framework for a proposed program developed. RESULTS: Twenty-six key informants participated in our interviews, and several themes were identified. These included providing education for stakeholders (patients, primary care providers, surgeons); challenges with sustaining various resources (laboratory costs, increased workload for pathologists); ensuring consistency of reporting test results; and developing a plan to measure program success. Using these themes, a framework for the reflex-testing program was developed. At a subsequent stakeholder meeting, the framework was refined, and recommendations were identified. CONCLUSIONS: This study identifies factors to ensure the effective implementation of a population-level program for reflex LS testing. The final product is a prototype that can be utilized in other jurisdictions, taking into account local environmental considerations.

Learning by Example: An International Perspective on Reflex-Testing for Lynch Syndrome.

BACKGROUND: Lynch syndrome (LS), an autosomal dominant cancer syndrome, is the most common cause of hereditary colon cancer. Currently, however, less than 5% of patients with LS have been identified. Reflex-testing programs (in which tumors of patients with colorectal cancer are routinely evaluated for LS) have been proposed for better identification of affected individuals, yet the uptake of these programs within health care systems is limited. This study explored the structure, implementation challenges, and future directions of existing international population-based reflex LS testing programs. METHODS: The study identified existing reflex-testing LS programs through the current literature and through a qualitative sampling approach. Key informants from each program were interviewed. Qualitative data were analyzed using a grounded theory analytic technique approach. RESULTS: The interviews were completed by 26 informants across seven identified programs. Three key themes were identified: (1) tension between a program imposed on stakeholders (a top-down approach) versus initiation of the program at the stakeholder level (bottom-up approach), (2) identification of pathologists as drivers of program success, and (3) strategies to optimize possible LS patients liaising with genetic counselors. Barriers to successful implementation included lack of stakeholder engagement and concerns regarding cost. Facilitators included strong administration to coordinate patient tracking and flexibility during the implementation process. CONCLUSIONS: Existing reflex-testing LS programs have varying structures, standards, and protocols. Program design can have a direct effect on the uptake of genetic testing. These are important considerations in the large-scale planning of LS reflex-testing programs within health systems.

Practice Doesn't Always Make Perfect: A Qualitative Study Explaining Why a Trial of an Educational Toolkit Did Not Improve Quality of Care.

BACKGROUND: Diabetes is a chronic disease commonly managed by family physicians, with the most prevalent complication being cardiovascular disease (CVD). Clinical practice guidelines have been developed to support clinicians in the care of diabetic patients. We conducted a pragmatic cluster randomized controlled trial (RCT) of a printed educational toolkit aimed at improving CVD management in diabetes in primary care, and found no effect, and indeed, the possibility of some harm. We conducted a qualitative evaluation to study the strategy for guideline implementation employed in this trial, and to understand its effects. This paper focuses solely on the qualitative findings, as the RCT's quantitative results have already been reported elsewhere. METHODS AND FINDINGS: All family practices in the province of Ontario had been randomized to receive the educational toolkit by mail, in either the summer of 2009 (intervention arm) or the spring of 2010 (control arm).A subset of 80 family physicians (representing approximately 10% of the practices randomized and approached, with records on 1,592 randomly selected patients with diabetes at high risk for CVD) then took part in a chart audit and reflective feedback exercise related to their own practice in comparison to the guideline recommendations. They were asked to complete two forms (one pre- and one post-audit) in order to understand their awareness of the guidelines pre-trial, their expectations regarding their individual performance pre-audit, and their reflections on their audit results. In addition, individual interviews with thirteen other family physicians were conducted. Textual data from interview transcripts and written commentary from the pre- and post-audit forms underwent qualitative descriptive analysis to identify common themes and patterns. Analysis revealed four main themes: impressions of the toolkit, awareness was not the issue, 'it's not me it's my patients', and chart audit as a more effective intervention than the toolkit. Participants saw neither the toolkit content nor its dissemination strategy to be effective, indicating they perceived themselves to be aware of the guidelines pre-trial. However, their accounts also indicated that they may be struggling to prioritize CVD management in the midst of competing demands for their attention. Upon receiving their chart audit results, many participants expressed surprise that they had not performed better. They reported that the audit results would be an important motivator for behaviour change. CONCLUSIONS: The qualitative findings outlined in this paper offer important insights into why the intervention was not effective. They also demonstrate that physicians have unperceived needs relative to CVD management and that the chart audit served to identify shortcomings in their practice of which they had been hitherto unaware. The findings also indicate that new methods of intervention development and implementation should be explored. This is important given the high prevalence of diabetes worldwide; appropriate CVD management is critical to addressing the morbidity and mortality associated with the disease.

To 'Get by' or 'get help'? A qualitative study of physicians' challenges and dilemmas when patients have limited English proficiency.

OBJECTIVE: Encounters between patients and physicians who do not speak the same language are relatively common in Canada, particularly in urban settings; this trend is increasing worldwide. Language discordance has important effects on health outcomes, including mortality. This study sought to explore physicians' experiences of care provision in situations of language discordance in depth. DESIGN: Qualitative study based on individual interviews. Interview guides elicited physicians' perspectives on how they determined whether communication could proceed unaided. A descriptive qualitative approach was adopted, entailing inductive thematic analysis. PARTICIPANTS: 22 physicians experienced in treating patients in situations of language discordance were recruited from the emergency and internal medicine departments of an urban tertiary-care hospital. SETTING: Large, inner-city teaching hospital in Toronto, Canada, one of the most linguistically diverse cities internationally. RESULTS: Determining when to 'get by' or 'get help' in order to facilitate communication was described as a fluid and variable process. Deciding which strategy to use depended on three inter-related factors: time/time constraints, acuity of situation and ease of use/availability of translation aids. Participants reported at times feeling conflicted about their decisions, portraying some of these clinical encounters as a 'troubling space' in which they experienced one or more dilemmas related to real versus ideal practice, responsibility and informed consent. CONCLUSIONS: In situations of language discordance, a physician's decision to 'get by' (vs 'get help') rests on a judgement of whether communication can be considered 'good enough' to proceed and depends on the circumstances of the specific encounter. The tension set up between what is 'ideal' and what is practically possible can be experienced as a dilemma by physicians. The study's findings have implications for practice and policy not only in Canada but in other multilingual settings, and indicate that physicians require greater support.

Designing a multifaceted survivorship care plan to meet the information and communication needs of breast cancer patients and their family physicians: results of a qualitative pilot study.

BACKGROUND: Following the completion of treatment and as they enter the follow-up phase, breast cancer patients (BCPs) often recount feeling 'lost in transition', and are left with many questions concerning how their ongoing care and monitoring for recurrence will be managed. Family physicians (FPs) also frequently report feeling ill-equipped to provide follow-up care to BCPs. In this three-phase qualitative pilot study we designed, implemented and evaluated a multi-faceted survivorship care plan (SCP) to address the information needs of BCPs at our facility and of their FPs. METHODS: In Phase 1 focus groups and individual interviews were conducted with 35 participants from three stakeholder groups (BCPs, FPs and oncology specialist health care providers (OHCPs)), to identify specific information needs. An SCP was then designed based on these findings, consisting of both web-based and paper-based tools (Phase 2). For Phase 3, both sets of tools were subsequently evaluated via focus groups and interviews with 26 participants. Interviews and focus groups were audio taped, transcribed and content analysed for emergent themes and patterns. RESULTS: In Phase 1 patients commented that web-based, paper-based and human resources components were desirable in any SCP. Patients did not focus exclusively on the post-treatment period, but instead spoke of evolving needs throughout their cancer journey. FPs indicated that any tools to support them must distill important information in a user-friendly format. In Phase 2, a pilot SCP was subsequently designed, consisting of both web-based and paper-based materials tailored specifically to the needs of BCPs as well as FPs. During Phase 3 (evaluation) BCPs indicated that the SCP was effective at addressing many of their needs, and offered suggestions for future improvements. Both patients and FPs found the pilot SCP to be an improvement from the previous standard of care. Patients perceived the quality of the BCP-FP relationship as integral to their comfort with FPs assuming follow-up responsibilities. CONCLUSIONS: This pilot multi-component SCP shows promise in addressing the information needs of BCPs and the FPs who care for them. Next steps include refinement of the different SCP components, further evaluation (including usability testing), and planning for more extensive implementation.