Co-design of a cancer nutrition care pathway by patients, carers and health professionals: The CanEAT pathway

Co-design of a cancer nutrition care pathway by patients, carers and health professionals: The CanEAT pathway | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Co-design of a cancer nutrition care pathway by patients, carers and health professionals: The CanEAT pathway Jenelle Loeliger, Sarah Dewar, Nicole Kiss, Jodi Dumbrell, Andrea Elliott, and 5 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-1795734/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 07 Jan, 2023 Read the published version in Supportive Care in Cancer → Version 1 posted 7 You are reading this latest preprint version Abstract Purpose: Limited practical resources exist to guide optimal nutrition care for patients, carers and health professionals (HPs). This study aimed to co-design a cancer nutrition care pathway to guide and improve the provision of consistent, evidence-based care with consumers and HPs. Methods: This study utilised an experienced-based co-design (EBCD) approach over five stages. Stage one involved stakeholder engagement and a literature review. Stage two included a survey and focus groups with patients/carers. Co-design workshops were conducted within stage three, key stakeholder consultation within stage four and the finalisation and dissemination of the cancer nutrition care pathway formed stage five. Results of stages three to five are the focus of this paper. Results: Two co-design workshops were held with patients, carers and HPs (n=32 workshop one; n=32 workshop two), who collectively agreed on areas of focus and key priorities. Following this, a consultation period was completed with patients, carers and HPs (n=45) to refine the pathway. The collective outcome of all study stages was the co-design of a cancer nutrition care pathway (The CanEAT pathway) defining optimal cancer nutrition care that combines evidence-based practice tips into a centralised suite of resources, tools and clinical guidance. Conclusion: The CanEAT pathway was co-designed by patients, carers and HPs. The EBCD approach is a meaningful way to develop targeted improvements in cancer care. The CanEAT pathway is freely available to guide and support patients, carers and HPs to aid the implementation of optimal nutrition care into clinical practice. nutrition diet experience-based co-design cancer patient and carer experience care pathway Figures Figure 1 Figure 2 Introduction Nutrition is well recognised as an important aspect of cancer care and can have a significant impact on improving the health and wellbeing of people with cancer [ 1 , 2 ]. A person’s cancer experience can differ greatly, resulting in varying nutrition care needs that are influenced by many factors including cancer diagnosis, cancer treatment or time-point in the cancer path [ 2 – 4 ]. Cancer nutrition care and information needs of patients and carers are not well understood [ 3 ]. Numerous guidelines and position statements, developed by expert health professionals (HPs), on cancer nutrition care are available to guide evidence-based practice (4–8). Such guidelines and recommendations are commonly presented as clinical questions with evidence-based and/or professional consensus recommendations. Effective translation and implementation of these recommendations into clinical practice can be complex and take many years before being embedded into clinical care [ 5 ]. The delay in translation to practice likely reduces access for patients and carers to evidence-based care. Variation in local models of cancer nutrition care between health services (including the level of adoption and adherence to evidence-based practice) has the potential to result in disparities in nutrition information provision and dietitian services. Health services and systems are progressively working on how to design and deliver care that is ‘patient-centred’ and meets the needs of people with cancer [ 6 ]. Health services are also driven by mandatory safety and quality standards to partner with consumers in the planning, design, delivery, measurement and evaluation of care [ 7 ]. Gaining a comprehensive understanding of consumer experiences and needs can be challenging, resource intensive and time-consuming and is not yet commonplace within health services and systems [ 8 ]. Engaging consumers in ‘deliberative’ techniques that are more in-depth than conventional consultation or feedback processes is one method proposed to address this [ 9 – 11 ]. Experience-based co-design (EBCD) is a type of participatory action research that has been successfully applied in healthcare improvement projects [ 8 , 10 – 17 ]. This method focuses on the patient as integral to the design process itself with a focus on their experiences and making the service ‘better’ for them [ 8 , 14 – 16 ]. Collectively, patients, carers and HPs work as co-design partners to improve a process or service through sharing experiences, identification and agreement on improvement priorities and mutual agreement on how to achieve them [ 8 , 10 ]. While EBCD is being more commonly applied in healthcare, facilitated through the use of freely available, practical toolkits and the adoption of the methodology into implementation research, it is recognised that guidelines for reporting EBCD are required [ 13 , 14 , 18 , 19 ]. A care pathway provides a pragmatic framework in which to utilise EBCD methodology. A care pathway can provide an evidence-based schema to designate the actions and treatment that patients should receive at specified time intervals and facilitate mutual decision-making and organisation of care [ 20 , 21 ]. The benefits of implementing care pathways include care standardisation, reduction in practice variation, translation of evidence-based guidelines at a practice level and improvements in patient care, safety and outcomes [ 20 , 21 ]. The development and implementation of nutrition care pathways to guide care is demonstrated to improve access to nutrition services, improve clinical and process outcomes and provide high implementation potential [ 20 , 22 , 23 ]. The aim of this study was to use an EBCD approach to develop a cancer nutrition care pathway to guide and improve the provision of consistent and evidence-based nutrition care of patients throughout the cancer care continuum. Methods EBCD methodology was utilised to develop a cancer nutrition care pathway. Primarily aligned with the Australian Healthcare and Hospitals Association (AHHA) EBCD toolkit and elements from The Point of Care Foundation toolkit, this study consisted of five stages undertaken over a fourteen-month period between November 2018 and December 2019 (Fig. 1) [18,19]. The development of the pathway was planned as an iterative process, whereby progress was continually built upon as stages progressed. This paper describes the EBCD approach, processes utilised and outcomes achieved within the project as a means of sharing and for potential replication by others, aligned with SQUIRE 2.0 reporting standards and recommendations for reporting on EBCD studies [14,24]. Ethical approval was received from the Peter MacCallum Cancer Centre Human Research Ethics Committee (LNR/48042/PMCC-2018). Stage 1: Start up and engage Key stakeholder engagement Key stakeholders were engaged through establishment of the project steering committee, who developed the project plan. This included expert project staff (dietitians), consumers, dietitian leaders representing five different health services (acute and community), research dietitians, government representatives, professional cancer organisation representatives, nursing and medical representatives. The steering committee collectively devised the best approaches for consumer engagement and strategies to gain interest from multidisciplinary HPs working in cancer care, for each stage of the project. Literature review and information gathering A rapid literature review and environmental scan was completed and covered four topics: (1) published evidence-based guidelines on nutrition and cancer, (2) literature on HP cancer nutrition needs, (3) literature on patient and carer cancer nutrition needs and (4) EBCD and cancer care. All searches identified relevant studies in the previous 10 years until March 2019 in databases MEDLINE, PubMed and Google Scholar (first 5 pages), restricted to human studies and in English. Search terms are described in Supplementary File 1. The environmental scan included an internet search for EBCD toolkits and other publicly available EBCD resources and identification of local EBCD researchers. Stage 2: Gather the experience Stage 2 included a patient and carer survey and focus groups which are reported elsewhere [4]. Development of pathway framework The pathway framework, including goals and key principles, were drafted through synthesis of key cancer nutrition recommendations from evidence-based practice guidelines and position statements. The pathway framework included time-points across the care continuum based upon the steps utilised in the Optimal Care Pathways, a national framework for cancer care in Australia [23]: Step 1 Prevention and early detection (omitted as not within project scope); Step 2 Presentation, initial investigations and referral; Step 3 Diagnosis, staging and treatment planning; Step 4 Treatment; Step 5 Care after initial treatment and recovery; Step 6 Managing residual or recurrent disease; Step 7 End-of-life care [23]. Stage 3: Understand the experience A purposive sample of patients and carers (n= 14) who participated in the patient/carer survey and focus groups were invited to attend co-design workshops. This sampling method was chosen to ensure a diverse range of patient and carer experiences, cancer diagnoses, sex, age, and geographical locations were represented. Travel support was provided to patient and carer participants. Multidisciplinary HPs working in cancer care in any health setting in Victoria (Australia) with regular contact with cancer patients were identified through professional contacts of steering committee members. Invitations to participate in the co-design workshops were sent via email to 50 HPs from diverse healthcare settings including dietitians, nurses, physicians, speech pathologists, physiotherapists, researchers in nutrition and/or relevant cancer care, government organisations and non-government cancer organisations. The target number of participants was a minimum of 20 at each of the two co-design workshops. The co-design workshops were conducted in June and July 2019 and held face-to-face in a central metropolitan location. Co-design workshop 1 The first co-design workshop brought patients, carers and HPs together for 2.5 hours in length and was facilitated by project leads (JL and SD) [18,19]. Results from Stage 2 were presented at the start of workshop one including a range of verbatim quotes and themes from the patient and carer survey responses and focus groups. The aim of workshop one was to: (a) review the pathway framework, goals and key principles; (b) explore and describe optimal cancer nutrition care and identify key resources, tools and services for inclusion within the pathway; (c) generate ideas and discuss options for the pathway structure, format, features, functionality, clinical utility and dissemination. Four small groups were formed within the workshop based on the steps of the Optimal Care Pathway for people with cancer [23]. Each group consisted of patients and/or carers and HPs who worked together on their allocated step(s) in the pathway with a nominated group facilitator. Groups completed the ‘I like, I wish, What if’ activity to discuss the pathway framework, goals and key principles, as described in the AHHA EBCD toolkit [18]. This activity invited participants to provide structured, open and honest feedback [18]. Discussion points were shared and added to by other groups. Collective group feedback was synthesised post-workshop by the facilitators to further develop the pathway structure and content, and goals and key principles. Co-design workshop 2 The drafted pathway framework, goals and key principles were presented. The aim of workshop two was to: (a) finalise and endorse the pathway framework, goals and key principles; (b) refine the description of optimal cancer nutrition care and resources, tools and services available within the pathway; (c) vote on preferred options for the pathway structure, format, features, functionality, clinical utility and dissemination; (d) identify any further areas for inclusion and improvement in the pathway. Six small groups were formed to address aims (a) and (b) and large group activities addressed aim (c) and (d) including participant voting on preferences for inclusion and/or exclusions within the pathway. Feedback was incorporated to further refine the pathway. Stage 4: Improve the experience Patients and carers involved in focus groups and/or co-design workshops, and HPs invited to the co-design workshops, were consulted for a final review of the pathway. This involved the distribution of an online survey in Research Electronic Data Capture (REDCap; Tennessee, USA) via email for feedback on content, comprehension, navigation and useability of the pathway during a four-week period (September-October 2019). Participants who were unable to complete the survey, provided feedback via a pre-arranged face-to-face meeting with project staff. Responses were analysed using content analysis by two project team members (SD, JL) to identify and agree on key themes in order to produce a final version of the pathway. Stage 5: Measure the experience The pathway was made freely available online. A dissemination plan to support sharing of the pathway, project outcomes and an implementation and sustainability plan to support use of the pathway in clinical practice, and future methods for maintaining currency of the pathway were developed. A celebratory gathering of steering committee members was held to showcase the final version of the pathway and reflect on the process. Results Stage 1: Start up and engage A high level of engagement from key stakeholders was achieved throughout the project as evidenced by high participation in all stages. Strategies included recruiting consumers via multiple large health service consumer networks and consumer cancer organisations and seeking HP interest via existing consumer and HP organisations, mailing lists and networks of steering committee members. Literature review and environmental scan findings identified key literature and toolkits that underpinned the foundation for the pathway framework and informed the pathway content. Project staff were upskilled in the use of EBCD was successful from the literature review findings, use of the EBCD toolkits and discussions with local identified experts; which all assisted in the identification of enablers and challenges specific to this project. Stage 2: Gather the experience Results of the patient and carer survey and focus groups are reported elsewhere [4]. Findings from Stage Two provided key touchpoints as reported by patients and carers and were presented in co-design workshop one. The pathway framework was developed primarily using the findings from literature review topic one (published evidence-based guidelines on nutrition and cancer), combined with the steps and clinical guidance presented in the Optimal Care Pathways [23]. Literature review findings also assisted in drafting the pathway goals and key principles. Stage 3: Understand the experience Co-design workshop one and two each had 32 attendees, which comprised a diverse group of patients, carers and HPs working in cancer care in a range of settings (Table 1). Twenty-five participants participated in both workshop one and two, and all patient and carer participants had been involved in the consumer survey and focus groups. The pathway goals and key principles were discussed, modified and finalised by co-design workshop participants (Table 2). Development of the pathway framework was achieved from collective sharing of HPs nutrition-related experiences of working within cancer care and the lived experiences of patient and carers in relation to cancer nutrition care. Activities within the workshops invited exploration of participants’ experiences which lead to agreed group priorities for change within the pathway. Table 1: Characteristics of co-design workshop participants Co-design workshop 1 N (%) Co-design workshop 2 N (%) Total participants 32 (100) 32 (100) Patients 4 (12.5) 6 (18.8) Carers 2 (6.0) 2 (6.0) Health professionals: Dietitian (acute) Dietitian (community/primary care) Speech pathologist (acute) Physiotherapist (acute) Physiotherapist (community/primary care) Nurse (acute) Nurse (community/primary care) Medical (acute) General Practitioner Government or non-government cancer agency 26 (81.3) 9 (28.1) 2 (6.3) 1 (3.1) 1 (3.1) 1 (3.1) 2 (6.3) 2 (6.3) 3 (9.4) 2 (6.3) 3 (9.4) 24 (75.0) 10 (31.3) 2 (6.3) 1 (3.1) 1 (3.1) 0 (0.0) 2 (6.3) 2 (6.3) 0 (0.0) 2 (6.3) 4 (12.5) Table 2. The cancer nutrition care pathway goals and key principles Pathway goals 1. To guide and improve the provision of consistent evidence-based nutrition care throughout the cancer care continuum and reduce unwanted variation 2. To enable optimal nutrition care to be met and implemented through increasing awareness and supporting patients, carers and health professionals 3. To be used as a tool to identify gaps in cancer nutrition services and inform quality improvement and research initiatives Pathway key principles 1. Optimal nutrition care will be: patient-centred and tailored to meet patient & carer needs coordinated and multidisciplinary integrated and consistent evidence-based easily accessible equitable timely from the right person safe effectively communicated proactive 2. Shared responsibility for optimal nutrition care among patients, carers and health professionals across the continuum in all settings through: increasing awareness and knowledge through information, education and training promoting collaboration, coordination and allocation of responsibility for nutrition care empowering all to be active participants 3. The right information at the right time from the right person: reputable/credible information and resources appropriate to those of all levels of health literacy practical and useful The areas of focus, key priorities and outcomes from co-design workshop one and two as agreed by patients, carers and HPs are shown in Table 3. Three drivers as being behind the key priorities and outcomes were identified; (1) nutrition is considered important alongside a cancer diagnosis and information is highly valued by patients and carers; (2) each person has individual needs and nutrition may be prioritised differently by patients, carers and HPs due to varying diagnoses, treatments, and time-point in the care continuum; and (3) patient, carers and HPs are seeking credible, evidence-based information that can be a ‘one-stop’ resource about nutrition and cancer. Key priorities and outcomes derived from the co-design workshops were incorporated to develop the pathway close to its final form. Feedback of personal gain from the co-design workshops from patients, carers and HPs were; ‘As a patient it gave me a much greater appreciation of the issues facing the wider 'cancer' community.’ (patient, co-design workshop participant) ‘The importance, role and value of nutrition care for patients with cancer. How complex nutrition care can be across the many stages of the cancer journey.’ (HP, co-design workshop participant) Feedback in regards to the entire EBCD process was received by patients, carers and HPs; ‘I appreciated that dietitians are trying to engage the whole community involved -doctors, nurses, patients & carers -in trying to formulate a better pathway to move forward in this critical area of patient care.’ (patient, co-design workshop participant) ‘I felt my opinion mattered and that I was heard - by both the organisers and the other participants. This gave me a feeling of satisfaction and that my experience mattered.’ (carer, co-design workshop participant) ‘Getting together to address existing issues that have yet to be addressed - a good opportunity to start the process rolling. Realisation that the process is very complex and there are many gaps. Also, there needs to be involvement from all levels for this to really work.’ (HP, co-design workshop participant) Table 3. Area of focus, key priorities and collective outcomes of the co-design workshops as agreed by patients, carers and health professionals Area of focus Key priorities and outcomes Describe and define evidence-based, optimal nutrition care • Pathway goals developed • Pathway key principles defined • Cancer nutrition pathway framework developed • Nutrition information most commonly sought within cancer care by patients, carers and health professionals was grouped into four key components (ranked in order): º Cancer diagnosis - nutrition priorities specific to a diagnosis and the level of nutrition risk associated with each º Nutrition issues – managing common nutrition and eating-related issues and nutrition impact symptoms º Cancer treatment - expected nutrition impact symptoms and nutrition risk with different treatments º Cancer step and transition - key information at each step and time point in the cancer path with a focus on transitions between these Cancer nutrition care pathway structure and format • Two pathways developed: º One targeted toward patients and carers (noting roles and information needs vary between patients and carers) º One targeted toward multidisciplinary cancer health professionals • Each pathway broken into two main sections: º Nutrition & cancer: what you need to know (i.e. foundation nutrition information and practical tips) º Nutrition & cancer: what you can expect (i.e. practical, action-based strategies to help with common nutrition issues) • Name of the pathway to incorporate reference to cancer, nutrition and eating well (outcome: The CanEAT pathway) • The pathway must be freely available in a digital and downloadable format Cancer nutrition care pathway features and functionality • Must be easy to navigate from one section to another and find the information you need quickly • Clear, easy language • Bullet points, key points and messages rather than long sentences • Content in the pathways to include: º Links to existing and relevant online resources from reputable sources º Frequently asked question section Cancer nutrition care pathway clinical utility i.e. how to use it • A centralised suite (or ‘one-stop shop’) of cancer nutrition information and resources with interactive links, tools and clinical guidance • Information appears in order of preference as determined by workshop participants • Information is ‘action-based’ and encourages patients and carers to adopt self-management strategies • End-users can chose whether to read the summaries only or read sections of the pathway in detail depending on their information needs Dissemination of the CanEAT pathway • One-page infographic flyer or postcard (including key messages of CanEAT pathway and link to it) to be created for distribution • Distribution of final CanEAT pathway to: º Participants of the patient and carer survey and focus groups, the co-design workshops and Steering Committee members º Professional networks via email, e-newsletter and social media • CanEAT pathway to be linked to relevant cancer organisations and health services: º Professional cancer organisations and credible education websites such as Cancer Council (including via the Optimal Care Pathways) and eviQ Education website (Cancer Institute New South Wales) Stage 4: Improve the experience Forty-five respondents completed the consultative feedback survey (n=11 patients, n=2 carers, n=32 multidisciplinary HPs including dietitians, researchers, General Practitioners, other Allied Health clinicians). Respondents noted the strengths of the pathway as; the comprehensive nature of the information, easy navigation, volume and range of links to existing resources and tools and clear language used; ‘It really is an excellent compilation of all aspects of diet and other ongoing issues in respect to most types of cancer.’ (person with cancer) ‘The CanEAT pathway is well written, sets a positive tone for the reader and it’s extremely comprehensive.’ (HP) ‘I wish I had had this while I was going through my treatment.’ (person with cancer) ‘Overall, this is amazing. Well done to everyone involved.’ (person with cancer) Respondents identified a number of areas for improvement in the pathway. These included length and formatting, a greater emphasis on major transitions of care such as between hospital and community care, improved navigation between pathway sections and a preference for an interactive website format. The name of the pathway was agreed; (1) The CanEAT pathway for people with cancer and their carers and (2) The CanEAT pathway for HPs (Fig. 2a and 2b). The name ‘CanEAT’ was agreed upon as a positive means to amalgamate reference to both cancer and nutrition and eating well. Feedback from the entire co-design process was considered, rationalised and adopted to finalise the pathway. Stage 5: Measure the experience The finalised CanEAT pathway was made freely available on the Peter MacCallum Cancer Centre website ( www.petermac.org/CanEATpathway ). Project timelines, scope and budget prevented the pathway being created into an interactive website and therefore the CanEAT pathways are available as interactive PDF documents (for easy use and navigation). Discussion To our knowledge, this study is one of few EBCD studies in the field of nutrition research and the first example of EBCD being applied directly to create a cancer nutrition care pathway, co-designed by patients, carers and HPs [ 25 ]. The area of nutrition and cancer is large in scope and complex in nature and therefore there was a large quantity of literature and best practice data to synthesise and incorporate into the CanEAT pathway. Having end-users (patients and carers) and service providers (HPs) work together within the co-design workshops was a positive outcome and facilitated sharing of experiences, a key component of EBCD studies [ 14 ]. The iterative stages of this project enabled patients and carers to share their stories within multiple stages of the study, both independently and collectively with HPs and allowed these experiences to be transformed into collective, tangible improvements. Previous EBCD studies conducted in cancer have focused on the design of a specific local cancer service [ 13 , 14 , 17 ], however our study has utilised EBCD to design a system-level evidence-based resource to both guide services and act as a source of information, with the potential for broad applicability and reach. Patients and carers report sourcing evidence-based cancer nutrition information to be difficult, and when information is located it can be misleading [ 3 , 4 , 26 , 27 ]. The CanEAT pathway provides comprehensive guidance for all patients from low to high risk of nutritional issues and nutrition decline, across the cancer care continuum. The information is applicable to patients who are under the care of a dietitian as well as those who are unable to access or prefer not to see a dietitian. The pathway content includes self-management strategies for both patients and carers to adopt, and ideally develop confidence in self-management of their nutrition care. For HPs, the CanEAT pathway brings together a breadth of guidelines and evidence-based recommendations in a practical format to guide both nutrition clinical care, service design and aid their own learning. Patient, carer and HP participants in this study identified shared goals for nutrition care; that nutrition advice and interventions are delivered to patients in a timely manner, and are evidence-based and individually tailored to need. These goals or ‘touchpoints’ emerged throughout each stage of the EBCD process, were shaped into key priorities for the pathway through discussion at co-design workshops and emphasised the ‘co’ in co-design. That is, it is more than simply ‘having a say’, it is recognising patients and carers as legitimate active partners in the design process [ 8 , 15 ]. Compared to other EBCD cancer studies [ 13 , 17 ], this project had equal or a higher levels of engagement from participants; patients, carers and a broad range of HPs from across different cancer speciality areas including dietitians, medical staff, general practitioners, nursing, speech pathologists, physiotherapists and other allied health professions. Viewpoints from all participants converged to form well-rounded perspectives and targeted improvements. Our experience from this study and supported by other published literature, indicates the value of embedding co-design methodology and practices into health care evaluations and systems [ 9 , 28 ]. EBCD involves patients and carers in a structured process throughout all stages of quality improvement and has the potential to improve services in a highly meaningful and sustainable way [ 9 ]. Our study adds to the literature describing EBCD based approaches applied to clinical improvement projects in cancer care. The CanEAT pathway has bridged a gap by providing guidance to HPs on cancer nutrition care and fills a gap in information needs for patients and carers. Further work is required to formally evaluate the impact of the CanEAT pathway within health services. Several limitations were apparent in this study. Participants who had a particular nutrition interest or experience may have been more likely to participate, and therefore the needs of people with less interest albeit high needs for nutrition information may not be represented. Time constraints allowed only two co-design workshops, where ideally 3–4 would have been optimal. HPs comprised the majority of workshop participants which may have skewed the views represented. Strengths of the study included the diversity of the cohort involved, high level of engagement from patients, carers and HPs and the generalizable nature of the outcomes. EBCD methodology added a depth to this study where participants truly worked collaboratively and created and shared priorities together to make system-level improvements. Consequently, the CanEAT pathway was not a pre-determined resource but was the result of an iterative process and the collective work of all participants throughout each stage of the project. Conclusion The co-designed CanEAT pathway demonstrates how the EBCD approach can be applied to a complex area such as nutrition and cancer to help inform targeted healthcare enhancements. This study demonstrated how the patient and carer voice can be utilised within healthcare improvement activities, with the potential to enhance both patient experience and services. The CanEAT pathway is now freely accessible online to support patients, carers and HPs ( www.petermac.org/CanEATpathway ). Further work is underway with our patient, carer and HP partners to support implementation of the CanEAT pathway into a range of health service settings. Abbreviations AHHA Australian Healthcare and Hospitals Association CanEAT The CanEAT pathway EBCD Experienced-based co-design HPs Health professionals REDCap Research Electronic Data Capture Declarations Funding: This work was supported by a grant received by the project team from the Victorian Government. Conflicts of interest: Jenelle Loeliger and Sarah Dewar received a salary from the grant received for this work. Nicole Kiss and Jenelle Loeliger are unpaid members of the Clinical Oncology Society of Australia Nutrition Executive Committee. Nicole Kiss has received research support from each of The Victorian Cancer Agency, Medical Nutrition Industry, World Cancer Research Funds, Medical Research Future Fund, Amgen OA-ANZBMS. Nicole Kiss received a speaking fee from Dietitian Connection. Nicole Kiss is an unpaid member of the Nursing and Allied Health Committee, International Association for the Study of Lung Cancer. All other authors declare that they have no conflicts of interest. Authors’ contributions All authors contributed to the study conception and design. Material presentation, data collection and analysis was performed by Jenelle Loeliger and Sarah Dewar. The first draft of the manuscript was written by Jenelle Loeliger and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript. Ethics approval: This study was performed in line with the principles of the Declaration of Helsinki. Ethical approval was received from the Peter MacCallum Cancer Centre Human Research Ethics Committee (LNR/48042/PMCC-2018). Consent to participate: Informed consent was obtained through a participant information sheet prior to commencing the survey (in the Research Electronic Data Capture), in written form prior to participating in the focus groups and the co-design workshops. Consent for publication: Not applicable Acknowledgements The authors would like to thank all participants who completed the survey, participated in focus groups and/or the co-design workshops. In addition, a special mention to the Victorian Government, project steering committee members, Victorian Cancer Malnutrition Collaborative project team, Victorian health services and cancer organisations who assisted in recruitment, and the Nutrition & Speech Pathology Department at Peter MacCallum Cancer Centre for their contributions and support of this work. 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Tang CY, Turczyniak M, Sayner A, Haines K, Butzkueven S, O'Connell HE (2020) Adopting a collaborative approach in developing a prehabilitation program for patients with prostate cancer utilising experience-based co-design methodology. Support Care Cancer 28 (11):5195-5202. doi:10.1007/s00520-020-05341-z Australian Healthcare & Hospital Association (AHHA) (2018) Experience Based Co-Design Toolkit. https://ahha.asn.au/experience-based-co-design-toolkit. Accessed September 16 2020 The Point of Care Foundation (2018) EBCD: Experience-based co-design toolkit. https://www.pointofcarefoundation.org.uk/resource/experience-based-co-design-ebcd-toolkit/. Accessed September 16 2020 Dewar SL, Porter J (2018) The Effect of Evidence-Based Nutrition Clinical Care Pathways on Nutrition Outcomes in Adult Patients Receiving Non-Surgical Cancer Treatment: A Systematic Review. Nutr Cancer 70 (3):404-412. doi:10.1080/01635581.2018.1445768 Lykins TC (1996) Nutrition support clinical pathways. Nutr Clin Pract 11 (1):16-20. doi:10.1177/011542659601100116 Keller HH, McCullough J, Davidson B, Vesnaver E, Laporte M, Gramlich L, Allard J, Bernier P, Duerksen D, Jeejeebhoy K (2015) The Integrated Nutrition Pathway for Acute Care (INPAC): Building consensus with a modified Delphi. Nutrition Journal 14 (1):63. doi:10.1186/s12937-015-0051-y Cancer Council Australia (2016) Optimal cancer care pathways. https://www.cancer.org.au/health-professionals/optimal-cancer-care-pathways. Accessed September 16 2020 Ogrinc G, Davies L, Goodman D, Batalden P, Davidoff F, Stevens D (2016) SQUIRE 2.0 (Standards for QUality Improvement Reporting Excellence): revised publication guidelines from a detailed consensus process. BMJ Quality & Safety 25 (12):986-992. doi:10.1136/bmjqs-2015-004411 Tay BSJ, Cox DN, Brinkworth GD, Davis A, Edney SM, Gwilt I, Ryan JC (2021) Co-Design Practices in Diet and Nutrition Research: An Integrative Review. Nutrients 13 (10). doi:10.3390/nu13103593 Warner EL, Basen-Engquist KM, Badger TA, Crane TE, Raber-Ramsey M (2022) The Online Cancer Nutrition Misinformation: A framework of behavior change based on exposure to cancer nutrition misinformation. Cancer. doi:10.1002/cncr.34218 Hartmuller VW, Desmond SM (2004) Professional and patient perspectives on nutritional needs of patients with cancer. Oncol Nurs Forum 31 (5):989-996. doi:10.1188/04.Onf.989-996 Fucile B, Bridge E, Duliban C, Law M (2017) Experience-based co-design: A method for patient and family engagement in system-level quality improvement. Patient Experience Journal 4:53-60. doi:10.35680/2372-0247.1209 Additional Declarations Competing interest reported. Jenelle Loeliger and Sarah Dewar received a salary from the grant received for this work. Nicole Kiss and Jenelle Loeliger are unpaid members of the Clinical Oncology Society of Australia Nutrition Executive Committee. Nicole Kiss has received research support from each of The Victorian Cancer Agency, Medical Nutrition Industry, World Cancer Research Funds, Medical Research Future Fund, Amgen OA-ANZBMS. Nicole Kiss received a speaking fee from Dietitian Connection. Nicole Kiss is an unpaid member of the Nursing and Allied Health Committee, International Association for the Study of Lung Cancer. All other authors declare that they have no conflicts of interest. Supplementary Files SupplementaryFile1JLoeliger.docx Cite Share Download PDF Status: Published Journal Publication published 07 Jan, 2023 Read the published version in Supportive Care in Cancer → Version 1 posted Editorial decision: Major revision 01 Dec, 2022 Reviews received at journal 01 Dec, 2022 Reviewers agreed at journal 21 Nov, 2022 Reviewers invited by journal 02 Aug, 2022 Editor assigned by journal 02 Aug, 2022 Submission checks completed at journal 14 Jul, 2022 First submitted to journal 25 Jun, 2022 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-1795734","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":121126287,"identity":"1bebadfe-e207-4b1e-9a82-a3e0f5547345","order_by":0,"name":"Jenelle Loeliger","email":"data:image/png;base64,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","orcid":"","institution":"Peter MacCallum Cancer Centre","correspondingAuthor":true,"submittingAuthor":false,"prefix":"","firstName":"Jenelle","middleName":"","lastName":"Loeliger","suffix":""},{"id":121126289,"identity":"24d247a6-cefb-45a4-8730-7970565bd81d","order_by":1,"name":"Sarah Dewar","email":"","orcid":"","institution":"Peter MacCallum Cancer 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03:44:08","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-1795734/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-1795734/v1","draftVersion":[],"editorialEvents":[{"content":"https://doi.org/10.1007/s00520-022-07558-6","type":"published","date":"2023-01-07T18:14:15+00:00"}],"editorialNote":"","failedWorkflow":false,"files":[{"id":24200897,"identity":"a3a6c0d4-2c63-43f8-9d4d-425715399cc3","added_by":"auto","created_at":"2022-07-22 16:06:20","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":81541,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cstrong\u003eThe experience-based co-design (EBCD) approach to develop the CanEAT pathway\u003c/strong\u003e\u003c/p\u003e","description":"","filename":"1.png","url":"https://assets-eu.researchsquare.com/files/rs-1795734/v1/4cf64aee452129368a3a06f2.png"},{"id":24200899,"identity":"59e7c956-79c3-41ec-8f20-7f597fcec8f3","added_by":"auto","created_at":"2022-07-22 16:06:20","extension":"png","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":168864,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cstrong\u003ea. Structure of The CanEAT pathway for people with cancer and their carers\u003c/strong\u003e\u003c/p\u003e\u003cp\u003e\u003cstrong\u003eb. Structure of The CanEAT pathway for health professionals\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e","description":"","filename":"2.png","url":"https://assets-eu.researchsquare.com/files/rs-1795734/v1/d9ffa11d112e249245cdcf1f.png"},{"id":44716124,"identity":"a63e05f6-06a6-45ae-8bd3-166e024681d2","added_by":"auto","created_at":"2023-10-16 18:23:38","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":692347,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-1795734/v1/82bcdba9-22a7-467e-a52c-9a98c66aea8e.pdf"},{"id":24200898,"identity":"13ec808f-4be2-4495-a2b9-1251dd9bc322","added_by":"auto","created_at":"2022-07-22 16:06:20","extension":"docx","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":18771,"visible":true,"origin":"","legend":"","description":"","filename":"SupplementaryFile1JLoeliger.docx","url":"https://assets-eu.researchsquare.com/files/rs-1795734/v1/744537daf93b69b9ab6bf24a.docx"}],"financialInterests":"Competing interest reported. Jenelle Loeliger and Sarah Dewar received a salary from the grant received for this work. Nicole Kiss and Jenelle Loeliger are unpaid members of the Clinical Oncology Society of Australia Nutrition Executive Committee. Nicole Kiss has received research support from each of The Victorian Cancer Agency, Medical Nutrition Industry, World Cancer Research Funds, Medical Research Future Fund, Amgen OA-ANZBMS. Nicole Kiss received a speaking fee from Dietitian Connection. Nicole Kiss is an unpaid member of the Nursing and Allied Health Committee, International Association for the Study of Lung Cancer. All other authors declare that they have no conflicts of interest.","formattedTitle":"Co-design of a cancer nutrition care pathway by patients, carers and health professionals: The CanEAT pathway","fulltext":[{"header":"Introduction","content":"\u003cp\u003eNutrition is well recognised as an important aspect of cancer care and can have a significant impact on improving the health and wellbeing of people with cancer [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e]. A person\u0026rsquo;s cancer experience can differ greatly, resulting in varying nutrition care needs that are influenced by many factors including cancer diagnosis, cancer treatment or time-point in the cancer path [\u003cspan additionalcitationids=\"CR3\" citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e]. Cancer nutrition care and information needs of patients and carers are not well understood [\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e].\u003c/p\u003e \u003cp\u003e Numerous guidelines and position statements, developed by expert health professionals (HPs), on cancer nutrition care are available to guide evidence-based practice (4\u0026ndash;8). Such guidelines and recommendations are commonly presented as clinical questions with evidence-based and/or professional consensus recommendations. Effective translation and implementation of these recommendations into clinical practice can be complex and take many years before being embedded into clinical care [\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e]. The delay in translation to practice likely reduces access for patients and carers to evidence-based care. Variation in local models of cancer nutrition care between health services (including the level of adoption and adherence to evidence-based practice) has the potential to result in disparities in nutrition information provision and dietitian services.\u003c/p\u003e \u003cp\u003eHealth services and systems are progressively working on how to design and deliver care that is \u0026lsquo;patient-centred\u0026rsquo; and meets the needs of people with cancer [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e]. Health services are also driven by mandatory safety and quality standards to partner with consumers in the planning, design, delivery, measurement and evaluation of care [\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e]. Gaining a comprehensive understanding of consumer experiences and needs can be challenging, resource intensive and time-consuming and is not yet commonplace within health services and systems [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e]. Engaging consumers in \u0026lsquo;deliberative\u0026rsquo; techniques that are more in-depth than conventional consultation or feedback processes is one method proposed to address this [\u003cspan additionalcitationids=\"CR10\" citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e]. Experience-based co-design (EBCD) is a type of participatory action research that has been successfully applied in healthcare improvement projects [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e, \u003cspan additionalcitationids=\"CR11 CR12 CR13 CR14 CR15 CR16\" citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e]. This method focuses on the patient as integral to the design process itself with a focus on their experiences and making the service \u0026lsquo;better\u0026rsquo; for them [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e, \u003cspan additionalcitationids=\"CR15\" citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e]. Collectively, patients, carers and HPs work as co-design partners to improve a process or service through sharing experiences, identification and agreement on improvement priorities and mutual agreement on how to achieve them [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e, \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e]. While EBCD is being more commonly applied in healthcare, facilitated through the use of freely available, practical toolkits and the adoption of the methodology into implementation research, it is recognised that guidelines for reporting EBCD are required [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e, \u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e, \u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e, \u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eA care pathway provides a pragmatic framework in which to utilise EBCD methodology. A care pathway can provide an evidence-based schema to designate the actions and treatment that patients should receive at specified time intervals and facilitate mutual decision-making and organisation of care [\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e, \u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e]. The benefits of implementing care pathways include care standardisation, reduction in practice variation, translation of evidence-based guidelines at a practice level and improvements in patient care, safety and outcomes [\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e, \u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e]. The development and implementation of nutrition care pathways to guide care is demonstrated to improve access to nutrition services, improve clinical and process outcomes and provide high implementation potential [\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e, \u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e, \u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eThe aim of this study was to use an EBCD approach to develop a cancer nutrition care pathway to guide and improve the provision of consistent and evidence-based nutrition care of patients throughout the cancer care continuum.\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003eEBCD methodology was utilised to develop a cancer nutrition care pathway. Primarily aligned with the Australian Healthcare and Hospitals Association (AHHA) EBCD toolkit and elements from The Point of Care Foundation toolkit, this study consisted of five stages undertaken over a fourteen-month period between November 2018 and December 2019 (Fig. 1) [18,19]. The development of the pathway was planned as an iterative process, whereby progress was continually built upon as stages progressed. This paper describes the EBCD approach, processes utilised and outcomes achieved within the project as a means of sharing and for potential replication by others, aligned with SQUIRE 2.0 reporting standards and recommendations for reporting on EBCD studies [14,24]. Ethical approval was received from the Peter MacCallum Cancer Centre Human Research Ethics Committee (LNR/48042/PMCC-2018).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eStage 1: Start up and engage\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eKey stakeholder engagement\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eKey stakeholders were engaged through establishment of the project steering committee, who developed the project plan. This included expert project staff (dietitians), consumers, dietitian leaders representing five different health services (acute and community), research dietitians, government representatives, professional cancer organisation representatives, nursing and medical representatives. The steering committee collectively devised the best approaches for consumer engagement and strategies to gain interest from multidisciplinary HPs working in cancer care, for each stage of the project.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eLiterature review and information gathering\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eA rapid literature review and environmental scan was completed and covered four topics: (1) published evidence-based guidelines on nutrition and cancer, (2) literature on HP cancer nutrition needs, (3) literature on patient and carer cancer nutrition needs and (4) EBCD and cancer care. All searches identified relevant studies in the previous 10 years until March 2019 in databases MEDLINE, PubMed and Google Scholar (first 5 pages), restricted to human studies and in English. Search terms are described in Supplementary File 1. The environmental scan included an internet search for EBCD toolkits and other publicly available EBCD resources and identification of local EBCD researchers.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eStage 2: Gather the experience\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eStage 2 included a patient and carer survey and focus groups which are reported elsewhere\u0026nbsp;[4].\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eDevelopment of pathway framework\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe pathway framework, including goals and key principles, were drafted through synthesis of key cancer nutrition recommendations from evidence-based practice guidelines and position statements. The pathway framework included time-points across the care continuum based upon the steps utilised in the Optimal Care Pathways, a national framework for cancer care in Australia\u0026nbsp;[23]: Step 1 Prevention and early detection (omitted as not within project scope); Step 2 Presentation, initial investigations and referral; Step 3 Diagnosis, staging and treatment planning; Step 4 Treatment; Step 5 Care after initial treatment and recovery; Step 6 Managing residual or recurrent disease; Step 7 End-of-life care\u0026nbsp;[23].\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eStage 3: Understand the experience\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eA purposive sample of patients and carers (n= 14) who participated in the patient/carer survey and focus groups were invited to attend co-design workshops. This sampling method was chosen to ensure a diverse range of patient and carer experiences, cancer diagnoses, sex, age, and geographical locations were represented. Travel support was provided to patient and carer participants. Multidisciplinary HPs working in cancer care in any health setting in Victoria (Australia) with regular contact with cancer patients were identified through professional contacts of steering committee members. Invitations to participate in the co-design workshops were sent via email to 50 HPs from diverse healthcare settings including dietitians, nurses, physicians, speech pathologists, physiotherapists, researchers in nutrition and/or relevant cancer care, government organisations and non-government cancer organisations. The target number of participants was\u0026nbsp;a minimum of\u0026nbsp;20 at each of the two co-design workshops. The co-design workshops were conducted in June and July 2019 and held face-to-face in a central metropolitan location.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eCo-design workshop 1\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe first co-design workshop brought patients, carers and HPs together for 2.5 hours in length and was facilitated by project leads (JL and SD)\u0026nbsp;[18,19]. Results from Stage 2 were presented at the start of workshop one including a range of verbatim quotes and themes from the patient and carer survey responses and focus groups. The aim of workshop one was to: (a) review the pathway framework, goals and key principles; (b) explore and describe optimal cancer nutrition care and identify key resources, tools and services for inclusion within the pathway; (c) generate ideas and discuss options for the pathway structure, format, features, functionality, clinical utility and dissemination. Four small groups were formed within the workshop based on the steps of the Optimal Care Pathway for people with cancer\u0026nbsp;[23]. Each group consisted of patients and/or carers and HPs who worked together on their allocated step(s) in the pathway with a nominated group facilitator. Groups completed the \u0026lsquo;I like, I wish, What if\u0026rsquo; activity to discuss the pathway framework, goals and key principles, as described in the AHHA EBCD toolkit\u0026nbsp;[18]. This activity invited participants to provide structured, open and honest feedback\u0026nbsp;[18]. Discussion points were shared and added to by other groups. Collective group feedback was synthesised post-workshop by the facilitators to further develop the pathway structure and content, and goals and key principles.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eCo-design workshop 2\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe drafted pathway framework, goals and key principles were presented. The aim of workshop two was to: (a) finalise and endorse the pathway framework, goals and key principles; (b) refine the description of optimal cancer nutrition care and resources, tools and services available within the pathway; (c) vote on preferred options for the pathway structure, format, features, functionality, clinical utility and dissemination; (d) identify any further areas for inclusion and improvement in the pathway. Six small groups were formed to address aims (a) and (b) and large group activities addressed aim (c) and (d) including participant voting on preferences for inclusion and/or exclusions within the pathway. Feedback was incorporated to further refine the pathway.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eStage 4: Improve the experience\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003ePatients and carers involved in focus groups and/or co-design workshops, and HPs invited to the co-design workshops, were consulted for a final review of the pathway. This involved the distribution of an online survey in Research Electronic Data Capture (REDCap; Tennessee, USA) via email for feedback on content, comprehension, navigation and useability of the pathway during a four-week period (September-October 2019). Participants who were unable to complete the survey, provided feedback via a pre-arranged face-to-face meeting with project staff. Responses were\u0026nbsp;analysed using content analysis by two project team members (SD, JL) to identify and agree on key themes\u0026nbsp;in order to produce a final version of the pathway.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eStage 5: Measure the experience\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe pathway was made freely available online. A dissemination plan to support sharing of the pathway, project outcomes and an implementation and sustainability plan to support use of the pathway in clinical practice, and future methods for maintaining currency of the pathway were developed. A celebratory gathering of steering committee members was held to showcase the final version of the pathway and reflect on the process.\u0026nbsp;\u003c/p\u003e"},{"header":"Results","content":"\u003cp\u003e\u003cstrong\u003eStage 1: Start up and engage\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eA high level of engagement from key stakeholders was achieved throughout the project as evidenced by high participation in all stages. Strategies included recruiting consumers via multiple large health service consumer networks and consumer cancer organisations and seeking HP interest via existing consumer and HP organisations, mailing lists and networks of steering committee members.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eLiterature review and environmental scan findings identified key literature and toolkits that underpinned the foundation for the pathway framework and informed the pathway content. Project staff were upskilled in the use of EBCD was successful from the literature review findings, use of the EBCD toolkits and discussions with local identified experts; which all assisted in the identification of enablers and challenges specific to this project.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eStage 2: Gather the experience\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eResults of the patient and carer survey and focus groups are reported elsewhere\u0026nbsp;[4]. Findings from Stage Two provided key touchpoints as reported by patients and carers and were presented in co-design workshop one. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThe pathway framework was developed primarily using the findings from literature review topic one (published evidence-based guidelines on nutrition and cancer), combined with the steps and clinical guidance presented in the Optimal Care Pathways\u0026nbsp;[23]. Literature review findings also assisted in drafting the pathway goals and key principles.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eStage 3: Understand the experience\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eCo-design workshop one and two each had 32 attendees, which comprised a diverse group of patients, carers and HPs working in cancer care in a range of settings (Table 1). Twenty-five participants participated in both workshop one and two, and all patient and carer participants had been involved in the consumer survey and focus groups. The pathway goals and key principles were discussed, modified and finalised by co-design workshop participants (Table 2). Development of the pathway framework was achieved from collective sharing of HPs nutrition-related experiences of working within cancer care and the lived experiences of patient and carers in relation to cancer nutrition care. Activities within the workshops invited exploration of participants\u0026rsquo; experiences which lead to agreed group priorities for change within the pathway.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 1: Characteristics of co-design workshop participants\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellpadding=\"0\" cellspacing=\"0\" width=\"0\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" width=\"49.922239502332815%\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" width=\"25.038880248833593%\"\u003e\n \u003cp\u003eCo-design workshop 1\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eN (%)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" width=\"25.038880248833593%\"\u003e\n \u003cp\u003eCo-design workshop 2\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eN (%)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" width=\"49.922239502332815%\"\u003e\n \u003cp\u003eTotal participants\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" width=\"25.038880248833593%\"\u003e\n \u003cp\u003e32 (100)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" width=\"25.038880248833593%\"\u003e\n \u003cp\u003e32 (100)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" width=\"49.922239502332815%\"\u003e\n \u003cp\u003ePatients\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" width=\"25.038880248833593%\"\u003e\n \u003cp\u003e4 (12.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" width=\"25.038880248833593%\"\u003e\n \u003cp\u003e6 (18.8)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" width=\"49.922239502332815%\"\u003e\n \u003cp\u003eCarers\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" width=\"25.038880248833593%\"\u003e\n \u003cp\u003e2 (6.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" width=\"25.038880248833593%\"\u003e\n \u003cp\u003e2 (6.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" width=\"49.922239502332815%\"\u003e\n \u003cp\u003eHealth professionals:\u003c/p\u003e\n \u003cp\u003eDietitian (acute)\u003c/p\u003e\n \u003cp\u003eDietitian (community/primary care)\u003c/p\u003e\n \u003cp\u003eSpeech pathologist (acute)\u003c/p\u003e\n \u003cp\u003ePhysiotherapist (acute)\u003c/p\u003e\n \u003cp\u003ePhysiotherapist (community/primary care)\u003c/p\u003e\n \u003cp\u003eNurse (acute)\u003c/p\u003e\n \u003cp\u003eNurse (community/primary care)\u003c/p\u003e\n \u003cp\u003eMedical (acute)\u003c/p\u003e\n \u003cp\u003eGeneral Practitioner\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eGovernment or non-government cancer agency\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" width=\"25.038880248833593%\"\u003e\n \u003cp\u003e26 (81.3)\u003c/p\u003e\n \u003cp\u003e9 (28.1)\u003c/p\u003e\n \u003cp\u003e2 (6.3)\u003c/p\u003e\n \u003cp\u003e1 (3.1)\u003c/p\u003e\n \u003cp\u003e1 (3.1)\u003c/p\u003e\n \u003cp\u003e1 (3.1)\u003c/p\u003e\n \u003cp\u003e2 (6.3)\u003c/p\u003e\n \u003cp\u003e2 (6.3)\u003c/p\u003e\n \u003cp\u003e3 (9.4)\u003c/p\u003e\n \u003cp\u003e2 (6.3)\u003c/p\u003e\n \u003cp\u003e3 (9.4)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" width=\"25.038880248833593%\"\u003e\n \u003cp\u003e24 (75.0)\u003c/p\u003e\n \u003cp\u003e10 (31.3)\u003c/p\u003e\n \u003cp\u003e2 (6.3)\u003c/p\u003e\n \u003cp\u003e1 (3.1)\u003c/p\u003e\n \u003cp\u003e1 (3.1)\u003c/p\u003e\n \u003cp\u003e0 (0.0)\u003c/p\u003e\n \u003cp\u003e2 (6.3)\u003c/p\u003e\n \u003cp\u003e2 (6.3)\u003c/p\u003e\n \u003cp\u003e0 (0.0)\u003c/p\u003e\n \u003cp\u003e2 (6.3)\u003c/p\u003e\n \u003cp\u003e4 (12.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 2. The cancer nutrition care pathway goals and key principles\u003c/strong\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellpadding=\"0\" cellspacing=\"0\" width=\"0\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" width=\"100%\"\u003e\n \u003cp\u003e\u003cstrong\u003ePathway goals\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" width=\"100%\"\u003e\n \u003cp\u003e1. To guide and improve the provision of consistent evidence-based nutrition care throughout the cancer care continuum and reduce unwanted variation\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" width=\"100%\"\u003e\n \u003cp\u003e2. To enable optimal nutrition care to be met and implemented through increasing awareness and supporting patients, carers and health professionals\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" width=\"100%\"\u003e\n \u003cp\u003e3. To be used as a tool to identify gaps in cancer nutrition services and inform quality improvement and research initiatives\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" width=\"100%\"\u003e\n \u003cp\u003e\u003cstrong\u003ePathway key principles\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" width=\"100%\"\u003e1. Optimal nutrition care will be:\u003col style=\"list-style-type: lower-alpha;\"\u003e\n \u003cli\u003epatient-centred and tailored to meet patient \u0026amp; carer needs\u003c/li\u003e\n \u003cli\u003ecoordinated and multidisciplinary\u003c/li\u003e\n \u003cli\u003eintegrated and consistent\u003c/li\u003e\n \u003cli\u003eevidence-based\u003c/li\u003e\n \u003cli\u003eeasily accessible\u003c/li\u003e\n \u003cli\u003eequitable\u003c/li\u003e\n \u003cli\u003etimely\u003c/li\u003e\n \u003cli\u003efrom the right person\u003c/li\u003e\n \u003cli\u003esafe\u003c/li\u003e\n \u003cli\u003eeffectively communicated\u003c/li\u003e\n \u003cli\u003eproactive\u003c/li\u003e\n \u003c/ol\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" width=\"100%\"\u003e\n \u003cp\u003e2. Shared responsibility for optimal nutrition care among patients, carers and health professionals across the continuum in all settings through:\u003c/p\u003e\n \u003col start=\"1\" style=\"list-style-type: lower-alpha;\"\u003e\n \u003cli\u003eincreasing awareness and knowledge through information, education and training\u0026nbsp;\u003c/li\u003e\n \u003cli\u003epromoting collaboration, coordination and allocation of responsibility for nutrition care\u0026nbsp;\u003c/li\u003e\n \u003cli\u003eempowering all to be active participants\u003c/li\u003e\n \u003c/ol\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" width=\"100%\"\u003e\n \u003cp\u003e3. The right information at the right time from the right person:\u003c/p\u003e\n \u003col start=\"1\" style=\"list-style-type: lower-alpha;\"\u003e\n \u003cli\u003ereputable/credible information and resources\u0026nbsp;\u003c/li\u003e\n \u003cli\u003eappropriate to those of all levels of health literacy practical and useful\u003c/li\u003e\n \u003c/ol\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThe areas of focus, key priorities and outcomes from co-design workshop one and two as agreed by patients, carers and HPs are shown in Table 3. Three drivers as being behind the key priorities and outcomes were identified; (1) nutrition is considered important alongside a cancer diagnosis and information is highly valued by patients and carers; (2) each person has individual needs and nutrition may be prioritised differently by patients, carers and HPs \u0026nbsp;due to varying diagnoses, treatments, and time-point in the care continuum; and (3) patient, carers and HPs are seeking credible, evidence-based information that can be a \u0026lsquo;one-stop\u0026rsquo; resource about nutrition and cancer. Key priorities and outcomes derived from the co-design workshops were incorporated to develop the pathway close to its final form. Feedback of personal gain from the co-design workshops from patients, carers and HPs were; \u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;As a patient it gave me a much greater appreciation of the issues facing the wider \u0026apos;cancer\u0026apos; community.\u0026rsquo; (patient, co-design workshop participant)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026nbsp;\u0026lsquo;The importance, role and value of nutrition care for patients with cancer. How complex nutrition care can be across the many stages of the cancer journey.\u0026rsquo; (HP, co-design workshop participant)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eFeedback in regards to the entire EBCD process was received by patients, carers and HPs;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;I appreciated that dietitians are trying to engage the whole community involved -doctors, nurses, patients \u0026amp; carers -in trying to formulate a better pathway to move forward in this critical area of patient care.\u0026rsquo; (patient, co-design workshop participant)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;I felt my opinion mattered and that I was heard - by both the organisers and the other participants.\u0026nbsp;This gave me a feeling of satisfaction and that my experience mattered.\u0026rsquo; (carer, co-design workshop participant)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;Getting together to address existing issues that have yet to be addressed - a good opportunity to start the process rolling. Realisation that the process is very complex and there are many gaps. Also, there needs to be involvement from all levels for this to really work.\u0026rsquo; (HP, co-design workshop participant)\u003c/em\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 3. Area of focus, key priorities and collective outcomes of the co-design workshops as agreed by patients, carers and health professionals\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellpadding=\"0\" cellspacing=\"0\" width=\"0\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" width=\"17.13091922005571%\"\u003e\n \u003cp\u003eArea of focus\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" width=\"82.86908077994428%\"\u003e\n \u003cp\u003eKey priorities and outcomes\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" width=\"17.13091922005571%\"\u003e\n \u003cp\u003eDescribe and define evidence-based, optimal nutrition care\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" width=\"82.86908077994428%\"\u003e\n \u003cp\u003e\u0026bull; \u0026nbsp;Pathway goals developed\u003c/p\u003e\n \u003cp\u003e\u003cspan style='color: rgb(0, 0, 0); font-family: \"Times New Roman\"; font-size: medium; font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: start; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; text-decoration-style: initial; text-decoration-color: initial; display: inline !important; float: none;'\u003e\u0026bull; \u0026nbsp;\u003c/span\u003e Pathway key principles defined\u003c/p\u003e\n \u003cp\u003e\u003cspan style='color: rgb(0, 0, 0); font-family: \"Times New Roman\"; font-size: medium; font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: start; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; text-decoration-style: initial; text-decoration-color: initial; display: inline !important; float: none;'\u003e\u0026bull; \u0026nbsp;\u003c/span\u003e Cancer nutrition pathway framework developed\u003c/p\u003e\u003cspan style='color: rgb(0, 0, 0); font-family: \"Times New Roman\"; font-size: medium; font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: start; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; text-decoration-style: initial; text-decoration-color: initial; display: inline !important; float: none;'\u003e\u0026bull; \u0026nbsp;\u003c/span\u003eNutrition information most commonly sought within cancer care by patients, carers and health professionals was grouped into four key components (ranked in order):\u003cp\u003e\u003cem\u003e\u0026ordm; \u0026nbsp;Cancer diagnosis\u003c/em\u003e - nutrition priorities specific to a diagnosis and the level of nutrition risk associated with each\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u003cem style='color: rgb(0, 0, 0); font-family: \"Times New Roman\"; font-size: medium; font-variant-ligatures: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: start; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; text-decoration-style: initial; text-decoration-color: initial;'\u003e\u0026ordm; \u0026nbsp;\u003c/em\u003e Nutrition issues\u003c/em\u003e \u0026ndash; managing common nutrition and eating-related issues and nutrition impact symptoms\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u003cem style='color: rgb(0, 0, 0); font-family: \"Times New Roman\"; font-size: medium; font-variant-ligatures: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: start; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; text-decoration-style: initial; text-decoration-color: initial;'\u003e\u0026ordm; \u0026nbsp;\u003c/em\u003e Cancer treatment\u003c/em\u003e - expected nutrition impact symptoms and nutrition risk with different treatments\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u003cem style='color: rgb(0, 0, 0); font-family: \"Times New Roman\"; font-size: medium; font-variant-ligatures: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: start; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; text-decoration-style: initial; text-decoration-color: initial;'\u003e\u0026ordm; \u0026nbsp;\u003c/em\u003e Cancer step and transition\u003c/em\u003e - key information at each step and time point in the cancer path with a focus on transitions between these\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" width=\"17.13091922005571%\"\u003e\n \u003cp\u003eCancer nutrition care pathway structure and format\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" width=\"82.86908077994428%\"\u003e\u003cspan style='color: rgb(0, 0, 0); font-family: \"Times New Roman\"; font-size: medium; font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: start; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; text-decoration-style: initial; text-decoration-color: initial; display: inline !important; float: none;'\u003e\u0026bull; \u0026nbsp;\u003c/span\u003eTwo pathways developed:\u003cp\u003e\u003cem style='color: rgb(0, 0, 0); font-family: \"Times New Roman\"; font-size: medium; font-variant-ligatures: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: start; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; text-decoration-style: initial; text-decoration-color: initial;'\u003e\u0026ordm; \u0026nbsp;\u003c/em\u003e One targeted toward patients and carers (noting roles and information needs vary between patients and carers)\u003c/p\u003e\n \u003cp\u003e\u003cem style='color: rgb(0, 0, 0); font-family: \"Times New Roman\"; font-size: medium; font-variant-ligatures: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: start; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; text-decoration-style: initial; text-decoration-color: initial;'\u003e\u0026ordm; \u0026nbsp;\u003c/em\u003e One targeted toward multidisciplinary cancer health professionals\u003c/p\u003e\u003cspan style='color: rgb(0, 0, 0); font-family: \"Times New Roman\"; font-size: medium; font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: start; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; text-decoration-style: initial; text-decoration-color: initial; display: inline !important; float: none;'\u003e\u0026bull; \u0026nbsp;\u003c/span\u003eEach pathway broken into two main sections:\u003cp\u003e\u003cem style='color: rgb(0, 0, 0); font-family: \"Times New Roman\"; font-size: medium; font-variant-ligatures: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: start; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; text-decoration-style: initial; text-decoration-color: initial;'\u003e\u0026ordm; \u0026nbsp;\u003c/em\u003e Nutrition \u0026amp; cancer: what you need to know (i.e. foundation nutrition information and practical tips)\u003c/p\u003e\n \u003cp\u003e\u003cem style='color: rgb(0, 0, 0); font-family: \"Times New Roman\"; font-size: medium; font-variant-ligatures: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: start; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; text-decoration-style: initial; text-decoration-color: initial;'\u003e\u0026ordm; \u0026nbsp;\u003c/em\u003e Nutrition \u0026amp; cancer: what you can expect (i.e. practical, action-based strategies to help with common nutrition issues)\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u003cspan style='color: rgb(0, 0, 0); font-family: \"Times New Roman\"; font-size: medium; font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: start; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; text-decoration-style: initial; text-decoration-color: initial; display: inline !important; float: none;'\u003e\u0026bull; \u0026nbsp;\u003c/span\u003e Name of the pathway to incorporate reference to cancer, nutrition and eating well (outcome: The CanEAT pathway)\u003c/p\u003e\n \u003cp\u003e\u003cspan style='color: rgb(0, 0, 0); font-family: \"Times New Roman\"; font-size: medium; font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: start; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; text-decoration-style: initial; text-decoration-color: initial; display: inline !important; float: none;'\u003e\u0026bull; \u0026nbsp;\u003c/span\u003e The pathway must be freely available in a digital and downloadable format\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" width=\"17.13091922005571%\"\u003e\n \u003cp\u003eCancer nutrition care pathway features and functionality\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" width=\"82.86908077994428%\"\u003e\n \u003cp\u003e\u003cspan style='color: rgb(0, 0, 0); font-family: \"Times New Roman\"; font-size: medium; font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: start; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; text-decoration-style: initial; text-decoration-color: initial; display: inline !important; float: none;'\u003e\u0026bull; \u0026nbsp;\u003c/span\u003e Must be easy to navigate from one section to another and find the information you need quickly\u003c/p\u003e\n \u003cp\u003e\u003cspan style='color: rgb(0, 0, 0); font-family: \"Times New Roman\"; font-size: medium; font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: start; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; text-decoration-style: initial; text-decoration-color: initial; display: inline !important; float: none;'\u003e\u0026bull; \u0026nbsp;\u003c/span\u003e Clear, easy language\u003c/p\u003e\n \u003cp\u003e\u003cspan style='color: rgb(0, 0, 0); font-family: \"Times New Roman\"; font-size: medium; font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: start; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; text-decoration-style: initial; text-decoration-color: initial; display: inline !important; float: none;'\u003e\u0026bull; \u0026nbsp;\u003c/span\u003e Bullet points, key points and messages rather than long sentences\u003c/p\u003e\u003cspan style='color: rgb(0, 0, 0); font-family: \"Times New Roman\"; font-size: medium; font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: start; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; text-decoration-style: initial; text-decoration-color: initial; display: inline !important; float: none;'\u003e\u0026bull; \u0026nbsp;\u003c/span\u003eContent in the pathways to include:\u003cp\u003e\u003cem style='color: rgb(0, 0, 0); font-family: \"Times New Roman\"; font-size: medium; font-variant-ligatures: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: start; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; text-decoration-style: initial; text-decoration-color: initial;'\u003e\u0026ordm; \u0026nbsp;\u003c/em\u003e Links to existing and relevant online resources from reputable sources\u003c/p\u003e\n \u003cp\u003e\u003cem style='color: rgb(0, 0, 0); font-family: \"Times New Roman\"; font-size: medium; font-variant-ligatures: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: start; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; text-decoration-style: initial; text-decoration-color: initial;'\u003e\u0026ordm; \u0026nbsp;\u003c/em\u003e Frequently asked question section\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" width=\"17.13091922005571%\"\u003e\n \u003cp\u003eCancer nutrition care pathway clinical utility i.e. how to use it\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" width=\"82.86908077994428%\"\u003e\n \u003cp\u003e\u003cspan style='color: rgb(0, 0, 0); font-family: \"Times New Roman\"; font-size: medium; font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: start; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; text-decoration-style: initial; text-decoration-color: initial; display: inline !important; float: none;'\u003e\u0026bull; \u0026nbsp;\u003c/span\u003e A centralised suite (or \u0026lsquo;one-stop shop\u0026rsquo;) of cancer nutrition information and resources with interactive links, tools and clinical guidance\u003c/p\u003e\n \u003cp\u003e\u003cspan style='color: rgb(0, 0, 0); font-family: \"Times New Roman\"; font-size: medium; font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: start; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; text-decoration-style: initial; text-decoration-color: initial; display: inline !important; float: none;'\u003e\u0026bull; \u0026nbsp;\u003c/span\u003e Information appears in order of preference as determined by workshop participants\u003c/p\u003e\n \u003cp\u003e\u003cspan style='color: rgb(0, 0, 0); font-family: \"Times New Roman\"; font-size: medium; font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: start; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; text-decoration-style: initial; text-decoration-color: initial; display: inline !important; float: none;'\u003e\u0026bull; \u0026nbsp;\u003c/span\u003e Information is \u0026lsquo;action-based\u0026rsquo; and encourages patients and carers to adopt self-management strategies\u003c/p\u003e\n \u003cp\u003e\u003cspan style='color: rgb(0, 0, 0); font-family: \"Times New Roman\"; font-size: medium; font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: start; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; text-decoration-style: initial; text-decoration-color: initial; display: inline !important; float: none;'\u003e\u0026bull; \u0026nbsp;\u003c/span\u003e End-users can chose whether to read the summaries only or read sections of the pathway in detail depending on their information needs\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" width=\"17.13091922005571%\"\u003e\n \u003cp\u003eDissemination of the CanEAT pathway\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" width=\"82.86908077994428%\"\u003e\n \u003cp\u003e\u003cspan style='color: rgb(0, 0, 0); font-family: \"Times New Roman\"; font-size: medium; font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: start; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; text-decoration-style: initial; text-decoration-color: initial; display: inline !important; float: none;'\u003e\u0026bull; \u0026nbsp;\u003c/span\u003e One-page infographic flyer or postcard (including key messages of CanEAT pathway and link to it) to be created for distribution\u0026nbsp;\u003c/p\u003e\u003cspan style='color: rgb(0, 0, 0); font-family: \"Times New Roman\"; font-size: medium; font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: start; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; text-decoration-style: initial; text-decoration-color: initial; display: inline !important; float: none;'\u003e\u0026bull; \u0026nbsp;\u003c/span\u003eDistribution of final CanEAT pathway to:\u003cp\u003e\u003cem style='color: rgb(0, 0, 0); font-family: \"Times New Roman\"; font-size: medium; font-variant-ligatures: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: start; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; text-decoration-style: initial; text-decoration-color: initial;'\u003e\u0026ordm; \u0026nbsp;\u003c/em\u003e Participants of the patient and carer survey and focus groups, the co-design workshops and Steering Committee members\u003c/p\u003e\n \u003cp\u003e\u003cem style='color: rgb(0, 0, 0); font-family: \"Times New Roman\"; font-size: medium; font-variant-ligatures: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: start; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; text-decoration-style: initial; text-decoration-color: initial;'\u003e\u0026ordm; \u0026nbsp;\u003c/em\u003e Professional networks via email, e-newsletter and social media\u003c/p\u003e\u003cspan style='color: rgb(0, 0, 0); font-family: \"Times New Roman\"; font-size: medium; font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: start; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; text-decoration-style: initial; text-decoration-color: initial; display: inline !important; float: none;'\u003e\u0026bull; \u0026nbsp;\u003c/span\u003eCanEAT pathway to be linked to relevant cancer organisations and health services:\u0026nbsp;\u003cp\u003e\u003cem style='color: rgb(0, 0, 0); font-family: \"Times New Roman\"; font-size: medium; font-variant-ligatures: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: start; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; text-decoration-style: initial; text-decoration-color: initial;'\u003e\u0026ordm; \u0026nbsp;\u003c/em\u003e Professional cancer organisations and credible education websites such as Cancer Council (including via the Optimal Care Pathways) and eviQ Education website (Cancer Institute New South Wales)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eStage 4: Improve the experience\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eForty-five respondents completed the consultative feedback survey (n=11 patients, n=2 carers, n=32 multidisciplinary HPs including dietitians, researchers, General Practitioners, other Allied Health clinicians). Respondents noted the strengths of the pathway as; the comprehensive nature of the information, easy navigation, volume and range of links to existing resources and tools and clear language used;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;It really is an excellent compilation of all aspects of diet and other ongoing issues in respect to most types of cancer.\u0026rsquo; (person with cancer)\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;The CanEAT pathway is well written, sets a positive tone for the reader and it\u0026rsquo;s extremely comprehensive.\u0026rsquo; (HP)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;I wish I had had this while I was going through my treatment.\u0026rsquo; (person with cancer)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;Overall, this is amazing. Well done to everyone involved.\u0026rsquo; (person with cancer)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eRespondents identified a number of areas for improvement in the pathway. These included length and formatting, a greater emphasis on major transitions of care such as between hospital and community care, improved navigation between pathway sections and a preference for an interactive website format. The name of the pathway was agreed; (1) The CanEAT pathway for people with cancer and their carers and (2) The CanEAT pathway for HPs (Fig. 2a and 2b). The name \u0026lsquo;CanEAT\u0026rsquo; was agreed upon as a positive means to amalgamate reference to both cancer and nutrition and eating well. Feedback from the entire co-design process was considered, rationalised and adopted to finalise the pathway.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eStage 5: Measure the experience\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe finalised CanEAT pathway was made freely available on the Peter MacCallum Cancer Centre website (\u003ca href=\"http://www.petermac.org/CanEATpathway\"\u003ewww.petermac.org/CanEATpathway\u003c/a\u003e). Project timelines, scope and budget prevented the pathway being created into an interactive website and therefore the CanEAT pathways are available as interactive PDF documents (for easy use and navigation).\u0026nbsp;\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eTo our knowledge, this study is one of few EBCD studies in the field of nutrition research and the first example of EBCD being applied directly to create a cancer nutrition care pathway, co-designed by patients, carers and HPs [\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e]. The area of nutrition and cancer is large in scope and complex in nature and therefore there was a large quantity of literature and best practice data to synthesise and incorporate into the CanEAT pathway.\u003c/p\u003e \u003cp\u003eHaving end-users (patients and carers) and service providers (HPs) work together within the co-design workshops was a positive outcome and facilitated sharing of experiences, a key component of EBCD studies [\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e]. The iterative stages of this project enabled patients and carers to share their stories within multiple stages of the study, both independently and collectively with HPs and allowed these experiences to be transformed into collective, tangible improvements. Previous EBCD studies conducted in cancer have focused on the design of a specific local cancer service [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e, \u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e, \u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e], however our study has utilised EBCD to design a system-level evidence-based resource to both guide services and act as a source of information, with the potential for broad applicability and reach.\u003c/p\u003e \u003cp\u003ePatients and carers report sourcing evidence-based cancer nutrition information to be difficult, and when information is located it can be misleading [\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e, \u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e, \u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e, \u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e]. The CanEAT pathway provides comprehensive guidance for all patients from low to high risk of nutritional issues and nutrition decline, across the cancer care continuum. The information is applicable to patients who are under the care of a dietitian as well as those who are unable to access or prefer not to see a dietitian. The pathway content includes self-management strategies for both patients and carers to adopt, and ideally develop confidence in self-management of their nutrition care. For HPs, the CanEAT pathway brings together a breadth of guidelines and evidence-based recommendations in a practical format to guide both nutrition clinical care, service design and aid their own learning.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003ePatient, carer and HP participants in this study identified shared goals for nutrition care; that nutrition advice and interventions are delivered to patients in a timely manner, and are evidence-based and individually tailored to need. These goals or \u0026lsquo;touchpoints\u0026rsquo; emerged throughout each stage of the EBCD process, were shaped into key priorities for the pathway through discussion at co-design workshops and emphasised the \u0026lsquo;co\u0026rsquo; in co-design. That is, it is more than simply \u0026lsquo;having a say\u0026rsquo;, it is recognising patients and carers as legitimate active partners in the design process [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e, \u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e]. Compared to other EBCD cancer studies [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e, \u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e], this project had equal or a higher levels of engagement from participants; patients, carers and a broad range of HPs from across different cancer speciality areas including dietitians, medical staff, general practitioners, nursing, speech pathologists, physiotherapists and other allied health professions. Viewpoints from all participants converged to form well-rounded perspectives and targeted improvements.\u003c/p\u003e\u003cp\u003eOur experience from this study and supported by other published literature, indicates the value of embedding co-design methodology and practices into health care evaluations and systems [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e, \u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e]. EBCD involves patients and carers in a structured process throughout all stages of quality improvement and has the potential to improve services in a highly meaningful and sustainable way [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e]. Our study adds to the literature describing EBCD based approaches applied to clinical improvement projects in cancer care. The CanEAT pathway has bridged a gap by providing guidance to HPs on cancer nutrition care and fills a gap in information needs for patients and carers. Further work is required to formally evaluate the impact of the CanEAT pathway within health services.\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eSeveral limitations were apparent in this study. Participants who had a particular nutrition interest or experience may have been more likely to participate, and therefore the needs of people with less interest albeit high needs for nutrition information may not be represented. Time constraints allowed only two co-design workshops, where ideally 3\u0026ndash;4 would have been optimal. HPs comprised the majority of workshop participants which may have skewed the views represented. Strengths of the study included the diversity of the cohort involved, high level of engagement from patients, carers and HPs and the generalizable nature of the outcomes. EBCD methodology added a depth to this study where participants truly worked collaboratively and created and shared priorities together to make system-level improvements. Consequently, the CanEAT pathway was not a pre-determined resource but was the result of an iterative process and the collective work of all participants throughout each stage of the project.\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003eThe co-designed CanEAT pathway demonstrates how the EBCD approach can be applied to a complex area such as nutrition and cancer to help inform targeted healthcare enhancements. This study demonstrated how the patient and carer voice can be utilised within healthcare improvement activities, with the potential to enhance both patient experience and services. The CanEAT pathway is now freely accessible online to support patients, carers and HPs (\u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e\u003ca href=\"http://www.petermac.org/CanEATpathway\" target=\"_blank\"\u003ewww.petermac.org/CanEATpathway\u003c/a\u003e\u003c/span\u003e\u003cspan address=\"http://www.petermac.org/CanEATpathway\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e). Further work is underway with our patient, carer and HP partners to support implementation of the CanEAT pathway into a range of health service settings.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cp\u003eAHHA Australian Healthcare and Hospitals Association\u003c/p\u003e\n\u003cp\u003eCanEAT The CanEAT pathway\u003c/p\u003e\n\u003cp\u003eEBCD Experienced-based co-design\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eHPs Health professionals\u003c/p\u003e\n\u003cp\u003eREDCap Research Electronic Data Capture\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eFunding:\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis work was supported by a grant received by the project team from the Victorian Government.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConflicts of interest:\u003c/strong\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eJenelle Loeliger and Sarah Dewar received a salary from the grant received for this work. Nicole Kiss and Jenelle Loeliger are unpaid members of the Clinical Oncology Society of Australia Nutrition Executive Committee. Nicole Kiss has received research support from each of The\u0026nbsp;Victorian Cancer Agency, Medical Nutrition Industry, World Cancer Research Funds, Medical Research Future Fund,\u0026nbsp;Amgen OA-ANZBMS.\u0026nbsp;Nicole Kiss\u0026nbsp;received a speaking fee from Dietitian Connection.\u0026nbsp;Nicole Kiss is an unpaid member of the\u0026nbsp;Nursing and Allied Health Committee, International Association for the Study of Lung Cancer.\u0026nbsp;All other authors declare that they have no conflicts of interest.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors\u0026rsquo; contributions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAll authors contributed to the study conception and design. Material presentation, data collection and analysis was performed by Jenelle Loeliger and Sarah Dewar. The first draft of the manuscript was written by Jenelle Loeliger and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eEthics approval:\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis study was performed in line with the principles of the Declaration of Helsinki. Ethical approval was received from the Peter MacCallum Cancer Centre Human Research Ethics Committee (LNR/48042/PMCC-2018).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent to participate:\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eInformed consent was obtained through a participant information sheet prior to commencing the survey (in the\u0026nbsp;Research Electronic Data Capture), in written form prior to participating in the focus groups and the co-design workshops.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for publication:\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgements\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors would like to thank all participants who completed the survey, participated in focus groups and/or the co-design workshops. In addition, a special mention to the Victorian Government, project steering committee members, Victorian Cancer Malnutrition Collaborative project team, Victorian health services and cancer organisations who assisted in recruitment, and the Nutrition \u0026amp; Speech Pathology Department at Peter MacCallum Cancer Centre for their contributions and support of this work.\u0026nbsp;\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eArends J, Baracos V, Bertz H, Bozzetti F, Calder PC, Deutz NEP, Erickson N, Laviano A, Lisanti MP, Lobo DN, McMillan DC, Muscaritoli M, Ockenga J, Pirlich M, Strasser F, de van der Schueren M, Van Gossum A, Vaupel P, Weimann A (2017) ESPEN expert group recommendations for action against cancer-related malnutrition. Clin Nutr 36 (5):1187-1196. doi:10.1016/j.clnu.2017.06.017\u003c/li\u003e\n\u003cli\u003eMarshall KM, Loeliger J, Nolte L, Kelaart A, Kiss NK (2019) Prevalence of malnutrition and impact on clinical outcomes in cancer services: A comparison of two time points. Clin Nutr 38 (2):644-651. doi:10.1016/j.clnu.2018.04.007\u003c/li\u003e\n\u003cli\u003eMaschke J, Kruk U, Kastrati K, Kleeberg J, Buchholz D, Erickson N, Huebner J (2017) Nutritional care of cancer patients: a survey on patients\u0026apos; needs and medical care in reality. Int J Clin Oncol 22 (1):200-206. doi:10.1007/s10147-016-1025-6\u003c/li\u003e\n\u003cli\u003eLoeliger J, Dewar S, Kiss N, Drosdowsky A, Stewart J (2021) Patient and carer experiences of nutrition in cancer care: a mixed-methods study. Support Care Cancer. doi:10.1007/s00520-021-06111-1\u003c/li\u003e\n\u003cli\u003eBauer J (2019) Evidence-based practice in nutrition and dietetics: Translating evidence into practice. Nutrition \u0026amp; Dietetics 76 (2):123-125. doi:https://doi.org/10.1111/1747-0080.12533\u003c/li\u003e\n\u003cli\u003eWolfe A (2001) Institute of Medicine Report: Crossing the Quality Chasm: A New Health Care System for the 21st Century. Policy, Politics, \u0026amp; Nursing Practice 2 (3):233-235. doi:10.1177/152715440100200312\u003c/li\u003e\n\u003cli\u003eAustralian Commission on Safety and Quality in Healthcare (2020) The National Safety and Quality Health Service (NSQHS) Standards. Australian Government. https://www.safetyandquality.gov.au/standards/nsqhs-standards.\u003c/li\u003e\n\u003cli\u003eBate P, Robert G (2006) Experience-based design: from redesigning the system around the patient to co-designing services with the patient. Qual Saf Health Care 15 (5):307-310. doi:10.1136/qshc.2005.016527\u003c/li\u003e\n\u003cli\u003eRobert G, Cornwell J, Locock L, Purushotham A, Sturmey G, Gager M (2015) Patients and staff as codesigners of healthcare services. BMJ : British Medical Journal 350:g7714. doi:10.1136/bmj.g7714\u003c/li\u003e\n\u003cli\u003eTsianakas V, Robert G, Maben J, Richardson A, Dale C, Griffin M, Wiseman T (2012) Implementing patient-centred cancer care: using experience-based co-design to improve patient experience in breast and lung cancer services. Support Care Cancer 20 (11):2639-2647. doi:10.1007/s00520-012-1470-3\u003c/li\u003e\n\u003cli\u003eIedema R, Merrick E, Piper D, Britton K, Gray J, Verma R, Manning N (2010) Codesigning as a Discursive Practice in Emergency Health Services: The Architecture of Deliberation. The Journal of Applied Behavioral Science 46 (1):73-91. doi:10.1177/0021886309357544\u003c/li\u003e\n\u003cli\u003ePiper D, Iedema R, Gray J, Verma R, Holmes L, Manning N (2012) Utilizing experience-based co-design to improve the experience of patients accessing emergency departments in New South Wales public hospitals: an evaluation study. Health Serv Manage Res 25 (4):162-172. doi:10.1177/0951484812474247\u003c/li\u003e\n\u003cli\u003eBrady GC, Goodrich J, Roe JWG (2020) Using experience-based co-design to improve the pre-treatment care pathway for people diagnosed with head and neck cancer. Support Care Cancer 28 (2):739-745. doi:10.1007/s00520-019-04877-z\u003c/li\u003e\n\u003cli\u003eGreen T, Bonner A, Teleni L, Bradford N, Purtell L, Douglas C, Yates P, MacAndrew M, Dao HY, Chan RJ (2020) Use and reporting of experience-based codesign studies in the healthcare setting: a systematic review. BMJ Qual Saf 29 (1):64-76. doi:10.1136/bmjqs-2019-009570\u003c/li\u003e\n\u003cli\u003eDonetto S, Pierri P, Tsianakas V, Robert G (2015) Experience-based Co-design and Healthcare Improvement: Realizing Participatory Design in the Public Sector. Design Journal, The 18:227-248. doi:10.2752/175630615X14212498964312\u003c/li\u003e\n\u003cli\u003eDonetto S, Tsianakas V, Robert G (2014) Using Experience-based Co-design (EBCD) to improve the quality of healthcare: mapping where we are now and establishing future directions.\u003c/li\u003e\n\u003cli\u003eTang CY, Turczyniak M, Sayner A, Haines K, Butzkueven S, O\u0026apos;Connell HE (2020) Adopting a collaborative approach in developing a prehabilitation program for patients with prostate cancer utilising experience-based co-design methodology. Support Care Cancer 28 (11):5195-5202. doi:10.1007/s00520-020-05341-z\u003c/li\u003e\n\u003cli\u003eAustralian Healthcare \u0026amp; Hospital Association (AHHA) (2018) Experience Based Co-Design Toolkit. https://ahha.asn.au/experience-based-co-design-toolkit. Accessed September 16 2020\u003c/li\u003e\n\u003cli\u003eThe Point of Care Foundation (2018) EBCD: Experience-based co-design toolkit. https://www.pointofcarefoundation.org.uk/resource/experience-based-co-design-ebcd-toolkit/. Accessed September 16 2020\u003c/li\u003e\n\u003cli\u003eDewar SL, Porter J (2018) The Effect of Evidence-Based Nutrition Clinical Care Pathways on Nutrition Outcomes in Adult Patients Receiving Non-Surgical Cancer Treatment: A Systematic Review. Nutr Cancer 70 (3):404-412. doi:10.1080/01635581.2018.1445768\u003c/li\u003e\n\u003cli\u003eLykins TC (1996) Nutrition support clinical pathways. Nutr Clin Pract 11 (1):16-20. doi:10.1177/011542659601100116\u003c/li\u003e\n\u003cli\u003eKeller HH, McCullough J, Davidson B, Vesnaver E, Laporte M, Gramlich L, Allard J, Bernier P, Duerksen D, Jeejeebhoy K (2015) The Integrated Nutrition Pathway for Acute Care (INPAC): Building consensus with a modified Delphi. Nutrition Journal 14 (1):63. doi:10.1186/s12937-015-0051-y\u003c/li\u003e\n\u003cli\u003eCancer Council Australia (2016) Optimal cancer care pathways. https://www.cancer.org.au/health-professionals/optimal-cancer-care-pathways. Accessed September 16 2020\u003c/li\u003e\n\u003cli\u003eOgrinc G, Davies L, Goodman D, Batalden P, Davidoff F, Stevens D (2016) SQUIRE 2.0 (Standards for QUality Improvement Reporting Excellence): revised publication guidelines from a detailed consensus process. BMJ Quality \u0026amp;amp; Safety 25 (12):986-992. doi:10.1136/bmjqs-2015-004411\u003c/li\u003e\n\u003cli\u003eTay BSJ, Cox DN, Brinkworth GD, Davis A, Edney SM, Gwilt I, Ryan JC (2021) Co-Design Practices in Diet and Nutrition Research: An Integrative Review. Nutrients 13 (10). doi:10.3390/nu13103593\u003c/li\u003e\n\u003cli\u003eWarner EL, Basen-Engquist KM, Badger TA, Crane TE, Raber-Ramsey M (2022) The Online Cancer Nutrition Misinformation: A framework of behavior change based on exposure to cancer nutrition misinformation. Cancer. doi:10.1002/cncr.34218\u003c/li\u003e\n\u003cli\u003eHartmuller VW, Desmond SM (2004) Professional and patient perspectives on nutritional needs of patients with cancer. Oncol Nurs Forum 31 (5):989-996. doi:10.1188/04.Onf.989-996\u003c/li\u003e\n\u003cli\u003eFucile B, Bridge E, Duliban C, Law M (2017) Experience-based co-design: A method for patient and family engagement in system-level quality improvement. Patient Experience Journal 4:53-60. doi:10.35680/2372-0247.1209\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"supportive-care-in-cancer","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"jscc","sideBox":"Learn more about [Supportive Care in Cancer](https://www.springer.com/journal/520)","snPcode":"520","submissionUrl":"https://submission.nature.com/new-submission/520/3","title":"Supportive Care in Cancer","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"stoa","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false},"keywords":"nutrition, diet, experience-based co-design, cancer, patient and carer experience, care pathway ","lastPublishedDoi":"10.21203/rs.3.rs-1795734/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-1795734/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003ePurpose: \u003c/strong\u003eLimited practical resources exist to guide optimal nutrition care for patients, carers and health professionals (HPs). This study aimed to co-design a cancer nutrition care pathway to guide and improve the provision of consistent, evidence-based care with consumers and HPs.\u003cstrong\u003e \u003c/strong\u003e\u003c/p\u003e\u003cp\u003e\u003cstrong\u003eMethods: \u003c/strong\u003eThis study utilised an experienced-based co-design (EBCD) approach over five stages. Stage one involved stakeholder engagement and a literature review. Stage two included a survey and focus groups with patients/carers. Co-design workshops were conducted within stage three, key stakeholder consultation within stage four and the finalisation and dissemination of the cancer nutrition care pathway formed stage five. Results of stages three to five are the focus of this paper.\u003c/p\u003e\u003cp\u003e\u003cstrong\u003eResults: \u003c/strong\u003eTwo co-design workshops were held with patients, carers and HPs (n=32 workshop one; n=32 workshop two), who collectively agreed on areas of focus and key priorities. Following this, a consultation period was completed with patients, carers and HPs (n=45) to refine the pathway. The collective outcome of all study stages was the co-design of a cancer nutrition care pathway (The CanEAT pathway) defining optimal cancer nutrition care that combines evidence-based practice tips into a centralised suite of resources, tools and clinical guidance.\u003c/p\u003e\u003cp\u003e\u003cstrong\u003eConclusion: \u003c/strong\u003eThe CanEAT pathway was co-designed by patients, carers and HPs. The EBCD approach is a meaningful way to develop targeted improvements in cancer care. The CanEAT pathway is freely available to guide and support patients, carers and HPs to aid the implementation of optimal nutrition care into clinical practice.\u0026nbsp;\u003c/p\u003e","manuscriptTitle":"Co-design of a cancer nutrition care pathway by patients, carers and health professionals: The CanEAT pathway","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2022-07-22 16:06:18","doi":"10.21203/rs.3.rs-1795734/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Major revision","date":"2022-12-01T15:15:29+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2022-12-01T08:19:04+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"e5f81589-892f-4805-8dc8-0e46e1bfe566","date":"2022-11-21T08:14:36+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2022-08-02T23:56:38+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2022-08-02T14:05:50+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2022-07-14T14:19:23+00:00","index":"","fulltext":""},{"type":"submitted","content":"Supportive Care in Cancer","date":"2022-06-26T03:42:21+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"supportive-care-in-cancer","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"jscc","sideBox":"Learn more about [Supportive Care in Cancer](https://www.springer.com/journal/520)","snPcode":"520","submissionUrl":"https://submission.nature.com/new-submission/520/3","title":"Supportive Care in Cancer","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"stoa","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false}}],"origin":"","ownerIdentity":"ad1ef23f-c735-46b9-a752-3afe599b802c","owner":[],"postedDate":"July 22nd, 2022","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[],"tags":[],"updatedAt":"2023-10-16T18:19:26+00:00","versionOfRecord":{"articleIdentity":"rs-1795734","link":"https://doi.org/10.1007/s00520-022-07558-6","journal":{"identity":"supportive-care-in-cancer","isVorOnly":false,"title":"Supportive Care in Cancer"},"publishedOn":"2023-01-07 18:14:15","publishedOnDateReadable":"January 7th, 2023"},"versionCreatedAt":"2022-07-22 16:06:18","video":"","vorDoi":"10.1007/s00520-022-07558-6","vorDoiUrl":"https://doi.org/10.1007/s00520-022-07558-6","workflowStages":[]},"version":"v1","identity":"rs-1795734","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-1795734","identity":"rs-1795734","version":["v1"]},"buildId":"WrCJVZZCHTDjtuVLN7oU0","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}