Background

Turning the tide on chronic disease is a major health system priority and integral to improving health outcomes, services, and costs. Seventy-three percent of Canadians 65 years of age and older have at least 1 of the 10 most common cancers and/or chronic diseases [1]. Many of these could be prevented through management of modifiable risk factors and early detection through screening [2].

Primary care provides the first contact for patients in the healthcare system and therefore is an ideal setting to implement cancer and chronic disease prevention and screening (CCDPS) in Canada. Unfortunately, a substantial gap exists between clinical recommendations for CCDPS and actual practice [2,3,4,5,6]. Due to a fragmented healthcare system and provider time constraints, implementation of guidelines tends to focus on recommendations for specific organ systems, medical conditions, or single risk factors [6, 7]. Initiatives such as the Canadian Cardiovascular Harmonized National Guidelines Endeavour (C-CHANGE) [8,9,10] and the Building on Existing Tools to Improve Chronic Disease Prevention and Screening in Primary Care (BETTER) program [6, 11] exemplify efforts to present compilations of high-quality, evidence-based recommendations across multiple conditions in a way that is accessible and actionable by primary care providers (PCPs).

The BETTER program [12], with over 15 years of in-depth study, has developed a novel, comprehensive approach to CCDPS in primary care based on the Chronic Care Model (CCM), which identifies essential elements needed to provide comprehensive, proactive care for patients with chronic conditions from health promotion to disease management [13,14,15]. This approach introduces an enhanced role, the Prevention Practitioner (PP), typically undertaken by a clinician not responsible for ongoing care decisions or routine care. The PP works directly with patients to determine which CCDPS actions they are eligible to receive, and through a process involving shared decision-making and S.M.A.R.T. (specific, measurable, attainable, realistic, time-bound) goal setting, develops a unique, personalized “prevention prescription” with each patient [16]. The evidence-based prevention prescription is rooted in harmonized, high-quality CCDPS guidelines and tailored to patients based on their medical history, risk factors, and family history. This cost-effective intervention has been demonstrated to improve uptake of CCDPS actions in urban primary care settings as compared to usual care [2] and similar improvements have been observed in rural and remote communities [17] and public health settings [18] across Canada.

In this paper, we describe the rigorous process undertaken to synthesize and harmonize high-quality CCDPS clinical practice guidelines (CPGs) to update the clinical recommendations used in the BETTER program. This work was part of the Building on Existing Tools to Improve Cancer and Chronic Disease Prevention and Screening in Primary Care for Wellness of Cancer Survivors and Patients (BETTER WISE) project, a multi-provincial cluster randomized controlled trial (cRCT) [19]. The results from the BETTER WISE trial, including patient-level outcomes to assess the effectiveness of the approach and qualitative findings describing the impacts of the global pandemic of coronavirus disease 2019 (COVID-19) on the trial and overall prevention and screening services in primary care, are reported elsewhere [20,21,22]. We also describe the updated BETTER toolkit, a unique set of resources and tools aimed at supporting prevention of multiple cancers and chronic conditions in the primary care setting. Refinement of the toolkit was undertaken due to changes to the clinical evidence since its last iteration and to include new content areas informed by emerging evidence and feedback received from end-users. The BETTER toolkit informs the PP role and provides PCPs with accessible evidence-based clinical practice tools to address CCDPS.

Methods

Overview of the evidence review and CPG harmonization process

The process used to search, identify, appraise, synthesize, and harmonize CPGs for the BETTER program builds on our previous work [6, 11], and involved the development of a compilation of robust CCDPS recommendations across the targeted conditions and risk factors while ensuring these were actionable and implementable in diverse settings across Canada. The clinical recommendations previously included were appliable to patients 40–65 years of age and encompassed the following areas: 1) cancers—breast, cervical, colorectal, lung and prostate; 2) chronic diseases – diabetes, cardiovascular disease, and obesity; 3) other conditions – depression; and 4) lifestyle risk factors – diet, physical activity, and alcohol and tobacco use. As described elsewhere [6, 11], implementation science theories, models, and frameworks were used to inform the BETTER program and the approach undertaken to update the clinical evidence for the program to ensure that these recommendations were relevant, practical, feasible, and implementable in primary care settings.

The BETTER evidence review and CPG synthesis/harmonization process involved 3 main phases: 1) evidence review and identification of high-quality CPGs; 2) guideline synthesis and harmonization to standardize recommendations; and 3) refinement of the BETTER toolkit. These 3 phases were conceptualized within the Canadian Institutes of Health Research (CIHR) knowledge-to-action process model, a conceptual framework that depicts the process of knowledge translation as a continuous cycle with knowledge creation at the core and the activities related to “action” or application/implementation of created knowledge at the periphery [6, 11, 19, 23]. This model has been identified as an implementation tool that can guide the process of translating evidence into practice [24]. This process culminated in the refinement and creation of knowledge resources and tools to support primary prevention and screening for relevant cancers and chronic diseases: the BETTER toolkit. Composed of clinical tools that succinctly and visually represent the clinical recommendations used in the program as well as a collection of accessible programs and resources available to providers and patients to support CCDPS efforts, the BETTER toolkit includes: a health survey, care paths for prevention and screening, a prevention prescription, a S.M.A.R.T. goals sheet, and bubble diagrams which provide CCDPS targets for patients at average risk.

Phase 1: evidence review and identification of high-quality CPGs

Review of the literature

An evidence review involving a targeted search strategy developed by the Centre for Effective Practice (CEP) [25] (a non-profit independent knowledge translation organization based in Toronto, Canada,) was conducted for 19 topics related to CCDPS in the following areas: 1) cancers—breast, cervical, colorectal, lung and prostate; 2) chronic diseases – chronic obstructive pulmonary disease (COPD), diabetes, cardiovascular disease, hepatitis C, obesity, and osteoporosis/bone health; 3) other conditions – depression; and 4) lifestyle risk factors – diet, physical activity, alcohol, cannabis, drug, tobacco, and vaping/e-cigarette use.

Search criteria and search strategy

The search updated the previous evidence review, which was conducted in 2016 [6, 11], and was limited to CPGs published in English between 2016 and 2021 focused on adults. Priority was given to Canadian guidelines (national and provincial – Alberta, Ontario, Newfoundland and Labrador, and Nova Scotia as these jurisdictions were engaged in the BETTER WISE project or actively implementing the BETTER program). Guidelines were excluded if they solely provided recommendations for diagnosis, treatment, or management of cancer, and not screening or prevention of cancer, or if they were not applicable to the primary care setting as the focus of the BETTER program is primary prevention and screening of cancer and chronic disease in primary care.

The 4-step search strategy used by the CEP to identify CPGs for each topic is described in Table 1. Specific details regarding the search strategies for each topic are provided in Appendix 1. Titles and abstracts of CPGs identified through this search were reviewed for relevance, and promising results were retrieved in full-text for further consideration.

Table 1 Four-step search process for high-quality clinical practice guidelines
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CPG quality appraisal

Full-text guidelines underwent an initial quality appraisal using the Appraisal of Guidelines for Research and Evaluation (AGREE) II Instrument, the purpose of which is to evaluate the process of CPG development and quality of reporting [26]. To pass the initial quality check performed by trained reviewers at the CEP, a guideline had to include clear recommendations linked to levels of evidence and be based on a systematic review of the literature (items 7 and 12 in the “Rigour of Development” domain of AGREE II). CPGs that fulfilled these criteria were appraised independently by 2 reviewers using the full AGREE II, consisting of 23 items across 6 domains and an overall quality score, in preparation for Phase 2. These appraisals were subsequently reviewed by a lead expert reviewer and reconciled into a single score to provide an overall summary of the methodological quality of each guideline.

A review was also conducted to identify guidelines published by provincial organizations in the 4 jurisdictions of interest. Provincial guidance documents published between 2016 and 2021, regardless of whether or not they passed the “Rigour of Development” criteria described above, were included for review in Phase 2 because of their relevance to the local context, as the BETTER program was actively being implemented in these jurisdictions and we needed to ensure that the recommendations incorporated into the program would be actionable, accounting for regional differences. The recommendations from the included high-quality CPGs and key provincial guidelines were extracted into evidence tables for review in Phase 2, which also included each recommendation’s level of evidence and the strength of recommendation, where available.

Phase 2: guideline synthesis and harmonization to standardize recommendations

The BETTER Clinical Working Group (CWG) was convened for 5 months (January to May 2022) to review the international and Canadian CPGs identified through Phase 1 and to integrate recommendations and resources for inclusion in the BETTER program (see Fig. 1). Members of the CWG included patients, health policy experts (regional, provincial, federal; government and non-government), PCPs, content experts (e.g., cancer, obesity, diabetes, lifestyle risk factors), and primary care and primary healthcare researchers who shared their perspectives to synthesize and harmonize the identified CPGs into clear, actionable recommendations. In this phase, the CWG was divided into 3 topic-review teams based on their area(s) of expertise:

  1. 1.

    Cancer team (5 members), focusing on breast, cervical, colorectal, lung, and prostate cancer;

  2. 2.

    Chronic disease team (10 members), focusing on cardiovascular disease, COPD, depression, diabetes, hepatitis C, obesity, and osteoporosis; and

  3. 3.

    Lifestyle risk factor team (4 members), focusing on alcohol, cannabis, drug, tobacco, and vaping/e-cigarette use, diet, and physical activity.

Fig. 1
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Phase 2: guideline harmonization process

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Topic-review teams worked independently to evaluate each recommendation within their ambit for clarity, actionability, and to determine if the recommendation could be operationalized in the primary care setting based on the following criteria: 1) focus on primary prevention and screening; 2) relevance to adults 40–69 years of age, the age group to which most CCDPS recommendations apply; and 3) applicability to primary care settings across different Canadian jurisdictions. Specifically, team members voted “yes” (i.e., include in BETTER), “no” (i.e., do not include in BETTER) with rationale for any “no” votes clearly documented, and “maybe” (i.e., further discussion required). The topic-review teams presented their assessments to the larger CWG at scheduled meetings. Any disagreements or ambiguities were resolved through discussion until consensus for inclusion or exclusion was reached. In cases where multiple individual recommendations for a topic were endorsed for inclusion, these were combined, harmonized, and simplified when appropriate, through group discussion. Recommendations emerging from provincial guidance documents that did not meet the initial quality appraisal criteria were reviewed and harmonized alongside those derived from the high-quality CPGs to ensure that recommendations were actionable in different contexts. Most of these provincial recommendations were consistent with those already incorporated, though there were some regional differences. For example, provincial guidance differed in regard to the criteria that should be used to determine the appropriate screening modality for an individual at elevated risk for colon cancer, all of which were reasonable based upon the high-quality guidance. Any jurisdictional nuances, such as differences in frequency of screening, were captured and indicated in the harmonized recommendations. Across all topics, individual and family risk factors (e.g., genetics, pre-existing medical conditions [personal or family], ethnic background) were incorporated to ensure that recommendations specific to high-risk and average-risk individuals were clear [11].

In Step 1, each topic-review team reviewed the international and national CPG recommendations identified through Phase 1 (see Fig. 1). As part of this first step, members were also asked to identify any high level international and national guidelines of which they were aware that were not included in their review. In Step 2, international and national clinical recommendations that reached consensus for inclusion were compared with provincial recommendations and policies to determine whether they were implementable in the 4 Canadian provinces of interest. For example, at the time of these discussions, the use of low-dose computed tomography (CT) scan for lung cancer screening, flexible sigmoidoscopy for average-risk colorectal cancer screening, and HPV testing for cervical cancer screening each varied among the different provinces. Any provincial clinical recommendations that differed from those already included and which were necessary to comply with a province’s approach to CCDPS were accepted for inclusion, noting the specific relevance to that province.

Finally, in Step 3, the topic-review teams reviewed the tools and resources previously included in the BETTER program [6, 11] alongside new tools/resources that were identified through our search strategy. Teams reflected on the tools’ clarity (i.e., use of unambiguous, understandable language), applicability (e.g., to diverse populations, patients 40–69 years of age), and clinical usefulness (e.g., for primary care settings and PPs). Validity was also considered for assessment tools (e.g., Patient Health Questionnaire 2-item (PHQ-2) [27] screen for depression, QRISK3 [28] cardiovascular disease risk calculator, and General Practice Physical Activity Questionnaire (GPPAQ) [29] screen for aerobic physical activity). Through this process, teams assembled updated, relevant, and useful clinician and/or patient-facing tools and resources to support the implementation of recommendations.

Phase 3: refinement of the BETTER toolkit

The final CPG recommendations selected for inclusion were synthesized and harmonized using succinct, clear, and actionable language while considering PCPs’ and PPs’ scope of practice, role in patient care, and linkages to community resources. These recommendations were then used to refine the existing BETTER toolkit to assist PCPs and PPs with the implementation of recommendations. The toolkit provides PCPs and patients with the tools and resources needed to: 1) evaluate the individual patient’s risks for cancer and chronic disease, 2) identify CCDPS action(s) relevant to the patient, and 3) educate and prevent cancer and chronic diseases through a process of shared decision-making, resulting in a personalized ‘prevention prescription’ and actionable goals for the patient [11].

Results

Search results and clinical recommendations

The titles and abstracts of 6,038 CPGs identified through the search strategy were reviewed for relevance to CCDPS and primary care settings. Of these, 243 guidelines were retrieved, considered in full-text, and underwent initial quality appraisal. CPGs that passed the initial quality appraisal and that were further assessed using the full AGREE II received an overall quality score between 0 and 7, where a higher score indicates higher overall quality, with 7 indicating a CPG of the highest quality [26]. Thirteen percent of the CPGs assessed using the full AGREE II received an overall quality score of 4, 28% received a score of 5, 55% received a score of 6, and 4% received a score of 7 (see Appendix 3 for full AGREE II scores, including scores for overall quality). After excluding those that did not meet the inclusion or quality criteria, Phase 1 yielded 51 CPGs which provided current, relevant CCDPS recommendations for the general population (see Fig. 2). A summary of the search results is provided in Appendix 2.

Fig. 2
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PRISMA diagram

*Guidelines reviewed in full text. Initial quality appraisal completed using two key items assessing ‘Rigour of Development’ in the AGREE II instrument (items 7 and 12). A score of 5 or more in these domains typically indicates that the criteria is satisfied, however, guidelines with domain scores of least a 3 were considered for further appraisal** Appraised using full, 23-item, AGREE II Instrument. An additional 22 provincial guidelines were identified and included for review in Phase 2

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Supplementary searches identified an additional 22 guidelines by provincial organizations in Alberta, Ontario, Nova Scotia, and Newfoundland and Labrador, which were also reviewed by the BETTER CWG in Phase 2. Discussions within topic-review teams and the larger CWG determined that 3 of the new topics proposed (COPD, hepatitis C, and drug use) did not have sufficient evidence for inclusion (e.g., lack of prevention and screening CPGs for the topic, focus on diagnosis, treatment, and/or management) and thus were excluded from the final recommendations, resulting in 16 topics included in the program – 3 new: osteoporosis/bone health, cannabis use, and vaping/e-cigarette use. Notably, there were no CPGs published between 2016 and 2021 that met our criteria for inclusion on the topic of depression. The decision made by the CWG was to include a recommendation to screen for depression since this was already a part of the BETTER program. The final recommendations and resources/tools included in the BETTER program are presented in Tables 2 and 3, respectively.

Table 2 Summary of primary prevention and screening recommendations for adults 40–69 years of age
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Table 3 BETTER program resources and tools list
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Updates to the BETTER toolkit

The updated BETTER toolkit consists of clinical practice tools and resources that help assess patients, support patient education, shared decision-making, and self-management, including regional, provincial, and national resources that patients can access (via a provider or self-referral) to help them achieve their health goals. The BETTER toolkit includes:

  1. 1.

    The BETTER Primary Prevention and Screening Maps (Figs. 3a and b, 4a, and b), depict the harmonized clinical recommendations included in the BETTER program for adults 40–69 years of age (summarized in Table 2). Represented as care paths for each CCDPS topic, the maps are intended to help PCPs determine a patient’s eligibility for CCDPS as well as appropriate next steps, including frequency of screening and recommended screening modality based on personal medical history, family history, and genetics.

  2. 2.

    A patient survey, which captures a patient’s detailed prevention and screening history, including lifestyle risks and family history. The survey contains validated tools (e.g., PHQ-2, GPPAQ) and documents patients’ level of confidence and how prepared they are to make changes.

  3. 3.

    The BETTER Bubble Diagrams (Figs. 5a and b), which are patient- and clinician- friendly representations of the BETTER prevention and screening maps with sex specific targets for patients at average risk. A blank version can be used as a patient-teaching tool to illustrate the patient’s current health status and their risk factors for each ‘bubble’ to help guide the conversation.

  4. 4.

    A prevention prescription (Fig. 6), which provides a summary of the patient’s risk for cancer and chronic disease, their screening and prevention targets, and any follow-up actions that may be required.

  5. 5.

    A goals sheet (Fig. 7) that summarizes the patient’s personalized, self-directed, actionable S.M.A.R.T. goals.

  6. 6.

    A compilation of regional, provincial, and national resources and tools for patients and PCPs to support implementation of CCDPS recommendations, inform patients, and support patients’ health goals (Table 3).

Fig. 3
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a The BETTER primary prevention and screening care map – cancer (front). B The BETTER Primary Prevention and Screening Care Map – Cancer (back)

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Fig. 4
figure 4

a The BETTER Primary Prevention and Screening Care Map – Chronic Disease (front). B The BETTER Primary Prevention and Screening Care Map – Chronic Disease (back)

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Fig. 5
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a The BETTER primary prevention bubble diagram: Male. B The BETTER Primary Prevention Bubble Diagram: Female

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Fig. 6
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The BETTER prevention prescription

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Fig. 7
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The BETTER goals sheet

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Discussion

Improving CCDPS in primary care is crucial to reducing the burden of cancer and chronic disease and increasing the sustainability of the healthcare system. In this paper, we describe the development of a comprehensive suite of resources and harmonization of recommendations that support CCDPS in patients 40–69 years of age. These are tailored to the individual by taking their personal medical history, family history, and genetics into consideration and for implementation in 4 Canadian provinces by incorporating provincial guidance. Stakeholders and end-users representing diverse perspectives (patients, policy makers, clinicians, and researchers) were engaged throughout the process to ensure that the clinical recommendations integrated into the BETTER program would be relevant, usable, and implementable.

Our evidence review involved a structured search of CPG databases, guideline developers, and grey literature to compile evidence-based clinical recommendations for CCDPS applicable to adults in the primary care setting. The resulting clinical recommendations expanded the age group for the BETTER program from 40–65 to 40–69 and added 3 new primary prevention and screening topics to the comprehensive scope of the program. In addition, clinical recommendations for secondary prevention of diabetes were introduced – retinopathy screening and screening for chronic kidney disease (see Table 2).

Informed by 51 international and Canadian CPGs and 22 guidelines from provincial organizations across 16 topics, the refined BETTER toolkit includes updated CCDPS care maps with succinct, clear, actionable recommendations that translate clinical evidence to PCPs to inform patient care, a streamlined patient survey to capture a patient’s prevention and screening history, and agenda setting tools to help set expectations for discussions with patients. The BETTER tools can be used at point of care to identify outstanding CCDPS actions and provide opportunities to address prevention and screening comprehensively, across many cancers and chronic diseases, with individual patients while considering their health goals, values, and preferences.

Initiated by the 1995 Institute of Medicine report Setting Priorities for Clinical Practice Guidelines [30], several decades of investment have resulted in robust methods to create high-quality guidelines; however, to achieve intended outcomes, CPGs must be implementable in real-world practice. The BETTER program has demonstrated that nuanced clinical tools can be designed to facilitate decision-making between PCPs and patients across multiple chronic diseases and lifestyle factors [2, 17, 18]. In this evidence review, we extended our topic scope, included health policy makers and patients in the evidence synthesis process, and tailored the included clinical recommendations for implementation in 4 Canadian provinces. The BETTER program process, grounded in the intersection between clinical practice, health policy, and systematic evidence, addresses a needed step to ensure feasible implementation of CPGs.

We recognize that our approach has limitations. Our population of interest was limited to adults 40–69 years of age with a focus on CCDPS and related risk factors. However, we believe that our approach may be useful to extend the work to different age groups, secondary prevention, and chronic disease management. All guidelines included in our review were published between 2016 and 2021 and as a result, recommendations from recent research, including guidelines published following the COVID-19 pandemic, would have been missed. For example, while the BETTER toolkit was being refined, two Canadian CPGs relating to cardiovascular disease [9] and alcohol use [31] were published in 2022 and 2023, respectively. To ensure that the recommendations used in the BETTER program remained clinically relevant, a subset of the BETTER CWG reviewed the CPGs and decided to include their recommendations. This highlights the importance of periodically and consistently reviewing the existing evidence to ensure that clinical practice is informed by the best current guidance. Though the clinical guidance was tailored to 4 jurisdictions in Canada and may not be applicable to other global jurisdictions or Canadian regions, the national recommendations included are relevant to a broad Canadian audience, and the tailoring methods used may prove useful to others when incorporating guidance for use in their context.

We developed a structured approach to synthesizing and blending CPG recommendations for application into primary care settings as described in our previous work [6, 11]. The process involved members of the Clinical Working Group sharing their diverse perspectives during group discussions to reach consensus for inclusion, harmonization, and synthesis of clinical recommendations extracted from high-quality CPGs. Though this approach is novel and not as recognized as other methodological approaches, such as the Delphi Method, it may still be used to guide and inform others on how to incorporate current clinical guidance into practice. Lastly, members of the Clinical Working Group were not asked to declare possible conflicts of interest prior to their involvement in the evidence review process; however, they represented diverse groups (PCPs, other healthcare professionals, patients, health policy specialists, content experts, researchers) from 4 Canadian Provinces, many of whom are authors on this manuscript and who have declared any competing interests here.

Conclusions

The process used by the BETTER program to synthesize and harmonize international and Canadian CPG recommendations resulted in a suite of tools and resources to support CCDPS in primary care practice. This approach incorporates diverse perspectives of patients, PCPs, and health policy makers to ensure usability in real-world practice. Used together, the BETTER toolkit provides resources and tools that clearly and succinctly express the breath of high-quality clinical evidence that was synthesized into actionable recommendations to help inform patient care and enable primary care providers to address CCDPS comprehensively in their clinical settings. The methods used may be applicable to others contemplating integrating evidence across broad content areas in primary care to help facilitate comprehensive care. The updated BETTER toolkit is available to PCPs and interprofessional team members practicing in Canadian primary care settings through the BETTER program [12].