Statewide survivorship care work

The primary objective of Project 1 was to increase awareness of and commitment to cancer survivorship care. This project established a baseline of current cancer survivorship care practices, including the use of survivorship care plans (SCPs) at Victorian health services. Survivorship education was provided to a wide range of health professionals, and a collaborative approach was taken with a selection of services to identify opportunities for improvements in care, and to provide tailored implementation support. 

Key activities 

Baseline site survey 

Key achievements  

• Baseline site survey developed and sent to 20 cancer health services across Victoria  

• Survey responses received from all 20 sites 

• Data analysed (18 final data sets as data from 3 sites within a precinct combined due to a shared operating model of care) 

Responses were collated into the Victorian Survivorship Care Data Report 2022. 

Virtual roadshow  

Key achievements  

• 18 tailored 60-minute educational webinars delivered  

• 17 focused on adult cancer survivorship, 1 focused on paediatric cancer survivorship 

• Total 670 attendees (live and webinar views) 

111/472 (24%) attendees completed evaluation surveys following the webinars. 

• 97% (108/111) rated the webinar as good, very good or excellent 

• 98% (109/111) reported an increase in knowledge and awareness of survivorship care 

• 99% (110/111) said they would likely use information from the webinar when caring for survivors. 

Summary report with recommendations 

Key achievements  

• Individualised site summary report prepared and sent to each participating site, including key recommendations to enhance survivorship care 

• Hard-copy survivorship resources from the ACSC and Cancer Council Victoria sent to each site 

This report summarised a selection of findings from the site’s baseline survey and offered six key recommendations for the site to consider implementing to enhance the survivorship care they were already providing. Recommendations were similar for each site, could be readily adopted, and considered each site's current resourcing levels. Recommendations broadly focused on: 

1. Referral to mycareplan.org.au to support survivorship care plan development 
2. Information provision, including referral to the Common Survivorship Issues Directory 
3. Referral to Cancer Council 13 11 20 
4. Referral to their local Cancer Council Cancer Wellness Program 
5. Completion of survivorship professional development, including Cancer Survivorship; an online introductory course for health professionals hosted on eviQ Education. 

Implementation support 

Key achievements  

• Seven sites received tailored implementation support provided by the ACSC, with aim to achieve a survivorship quality improvement initiative at their site 

• Tailored implementation summary report provided to each participating site 

Tailored implementation support was provided to seven sites from August 2021 to January 2022. It involved two project officers at the ACSC remotely supporting sites to implement a survivorship care quality improvement initiative. Quality improvement initiatives across these sites broadly focused on information provision, the implementation of survivorship appointments and the evaluation of established survivorship clinics. 

Follow-up survey 

Key achievements  

• Follow-up survey to evaluate project impact developed and sent to 18 sites across Victoria 

• 10/18 responses received regarding project impact; 7/7 responses received regarding implementation phase 

The follow-up survey sought feedback from all sites on the recommendations provided in the summary report, and any perceived changes in survivorship care awareness, knowledge, and confidence at the site after participating in this project. Sites that participated in the implementation phase of the project also received survey questions evaluating its effectiveness. 

• 100% (10/10) of sites agreed that their involvement in the project raised awareness of survivorship care at their site 

• 100% (10/10) agreed or strongly agreed that their involvement in the project increased awareness of survivorship resources available and how to access them 

• 90% (9/10) agreed that their involvement in the project increased knowledge about survivorship. 

Final site report 

Key achievements  

• Individualised final site reports provided to all sites, including comparative statewide data based on results from the baseline site survey 

• De-identified data report provided and available via ACSC website 

An individualised final site report was provided to the 18 sites (data from 3 sites within a precinct combined) in March 2022. This report provided statewide comparative data of responses to select questions from the baseline site survey, so sites could compare their responses to other services across Victoria. Data was de-identified, with each site able to identify only their response. Regional and metropolitan site data comparisons were provided for select questions. The report also included a summary of the follow-up survey data, including de-identified statewide comparative data of responses. 

Project 2's main objective was to develop and expand mycareplan.org.au, a free online survivorship care plan (SCP) generator, from the existing three to six cancer types. The database content components include treatment categories, acute and late side-effects for all relevant treatments, wellbeing recommendations and supportive services components. 

The project has expanded the current mycareplan.org.au interface to include an additional three cancer types. It allows users to produce comprehensive and evidence-based SCPs for:

• early-stage melanoma

• non-Hodgkin lymphoma (diffuse large B cell (DLBCL)) 

• uterine cancer (endometrial). 

These complement the existing SCPs for:

• early-stage breast

• early-stage bowel 

• localised prostate cancer. 

The project was delivered within a ten-month period, on time and within budget. 

Establishment phase 

Key Achievements 

• Engaged non-government organisations for each cancer type (completed March 2021) 

• Established 3x Reference Groups (completed July 2021) 

• Engaged a web developer (completed March 2021) 

The Embed and spread project team was committed to working with non-government organisations to achieve optimal care and outcomes for cancer survivors in addition to this being a key deliverable in this project. Reference groups were formed and engagement with stakeholders was undertaken. 

Research, content development and refinement 

Key Achievements 

• Research and core content development (completed mid-August 2021) 

• Content refinement for three cancer types, for user testing (completed mid-November 2021)  

• Broad consultation to ensure a range of feedback on database content 

Comprehensive research and core content development was undertaken. Relevant national and international evidence based clinical guidelines and information were used. Members for each reference group contributed expertise, assessed content and guided refinement. As a result, six databases were developed. Two for each cancer type housing detailed and relevant ‘Treatment’ and ‘Wellbeing’ sections. 

Design and web development 

Key Achievements 

• Refined functionality of usage metrics on mycareplan.org.au (completed August 2021) 

• Designed and built templates for mycareplan.org.au (completed December 2021) 

• Enhanced functionality by incorporating five new features – special instructions, cancer staging, back to top button, and feedback widget (completed December 2021)  

The usage metrics have been updated to provide more details on sessions and users by region and cities. This is available for all six cancer types on the site and can be tracked monthly. Further personalisation of the care plan allows survivors to add their staging details to their cancer diagnosis. 

Comprehensive targeted user testing 

Key Achievements  

• Development of a detailed user testing plan including the strategy, purpose, schedule, deadlines and the resources required (completed August 2021) 

• Comprehensive targeted user testing for the three new cancer types on mycareplan.org.au finalised (completed 30 November 2021) 

• Complete review of all tester responses and actioned feedback where appropriate (completed 15 December 2021) 

65 testers were recruited, 30 consumers and 35 subject experts.

User testing undertaken showed that for those who responded: 

• 100% (65/65) indicated mycareplan.org.au as easy to use 

• 97% (62/64) indicated the language as easy to understand 

• 94% (60/64) would recommend the site to others 

• 90% (27/30) of consumers were highly satisfied with the care plan generated 

• Consumer and subject experts indicated side effects information, wellbeing, and self-help information as relevant and the care plan easy to download and share. 

All feedback was assessed. Decisions regarding inclusion of feedback were made by consensus with reference groups and the project team. Changes included: 

• Increased linkages to primary and community-based services 

• Content refinement 

• Expansion of the psychosocial content to include loss of self, impact on carers and finances /return to work sections 

• Addition of optional staging section 

Promotion and Go-live 

Key Achievements 

• Early stage melanoma and uterine cancer (endometrial) launched on 1 December 2021 

• Non-Hodgkin lymphoma (DLBCL) launched on 15 December 2021 

• Promotion at launch of each care plan on 8, 15 & 21 December 2021  

Promotion and dissemination 

Key Achievements 

• Promotion and dissemination campaign completed (December 2021) 

• Active engagement with non-government organisations (completed December 2021) 

• Increased awareness and usage of mycareplan.org.au (from go-live December 2021) 

A communication and promotion plan were developed and undertaken in two phases, announcing the expansion of mycareplan.org.au to include three new cancer types, and announcing go-live and available for use. 

Pivotal to the project’s success was the robust establishment phase, comprehensive research and content refinement, collaboration and engagement with reference group members and external stakeholders and comprehensive targeted user testing. Key highlights of this project included 1) developing partnerships and working relationships with multiple stakeholders and 2) strong evaluation data. 

The project team acknowledges the support of all health professionals, consumers and experts who have helped to develop and achieve this valuable resource.