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Meeting the needs of cancer survivors through shared care
Developing guidance for implementation
Dr Karolina Lisy, Jennifer Kent, Jodi Dumbrell, Amanda Piper, Helana Kelly, Prof Michael Jefford
Why shared care?
• Lots of survivors (1.1M) and growing (1.9M by 2040)1
• Hospital-based specialist-led care inefficient
• Limited health resources
• Inadequate follow-up - many unmet needs in Victorian survivors2
• Important role for primary care in optimal cancer care3
1. Cancer Council Australia: Australians living with and beyond cancer in 2040, Cancer Council Australia, 2018
2. Jefford M., AC Ward, K Lisy et al. 2017. 'Patient-reported outcomes in cancer survivors: a population-wide cross-sectional study', Support Care Cancer.
3. Rubin G, Berendsen A, Crawford S,. et al Lancet Oncol, 16: 1231-72
Why shared care?
• SHARED SURVIVORSHIP CARE is follow-up care that is shared between oncology and primary care providers
• SHARED CARE has been investigated: ProCare RCT1 and SCORE RCT (ongoing)2
• SHARED CARE:• Is non-inferior to specialist-led care (QoL, symptoms, distress, unmet needs)• Is preferred by patients• Generates cost savings
• SHARED CARE is recommended as a standard of care by Cancer Australia3
• BUT evidence-based recommendations to guide implementation of shared survivorship care are lacking…
1. Emery JD, Jefford M, King M, et al. BJU Int 2017; 119(3): 381-9.
2. Jefford M, Emery J, Grunfeld E, et al. Trials 2017; 18(1): 506.
3. Cancer Australia. The Cancer Australia Statement-Influencing best practice in breast cancer. https://thestatement.canceraustralia.gov.au/
Project aims
1) Systematic review of quantitative and qualitative evidence to determine facilitators and barriers to shared cancer care
2) Focus groups to explore perceived facilitators and barriers to implementing, delivering and sustaining shared care from the perspectives of key HCPs involved
3) Develop guidance to inform implementation of shared care
1. Systematic review CHARACTERISTICS OF STUDIES (n=13)
SETTING:➢ Australia (n=8)➢ US (n=3)➢ The Netherlands (n=1)➢ UK (n=1)
PARTICIPANTS:➢ Health care professionals (HCPs) (n=5) ➢ Cancer patients/survivors (n=4)➢ Both cancer survivors and HCPs (n=4)
CANCER TYPE:➢ Multiple/any (n=7)➢ Breast (n=3)➢ Colorectal (n=1)➢ Breast and colorectal (n=1)➢ Breast and prostate (n=1)
PUBLICATION DATE:➢ 12 studies 2010 onwards
1. Systematic review Results of mixed methods synthesis: 16 themes
Mixed methods synthesis
Data extraction
Quality appraisal
PROCESS CONSIDERATIONS• Communication• The need for shared care protocols and guidelines• Care coordination• Administrative support• Electronic medical records• The role of survivorship care plans (SCPs)
HCP CONSIDERATIONS• Perceived lack of GP knowledge and need for GP training• Role clarity• Lack of time/high workloads• GP interest
PATIENT CONSIDERATIONS• Benefits for patients• Patient-provider relationships• Engaging and supporting patients
POLICY CONSIDERATIONS• Need for consistent policy• Financial considerations• Outcome measurement and data collection
1. Systematic review
PROCESS CONSIDERATIONS• Communication• The need for shared care protocols and guidelines• Care coordination• Administrative support• Electronic medical records• The role of survivorship care plans (SCPs)
HCP CONSIDERATIONS• Perceived lack of GP knowledge and need for GP training• Role clarity• Lack of time/high workloads• GP interest
PATIENT CONSIDERATIONS• Benefits for patients• Patient-provider relationships• Engaging and supporting patients
POLICY CONSIDERATIONS• Need for consistent policy• Financial considerations• Outcome measurement and data collection
Results of mixed methods synthesis: 16 themes
Mixed methods synthesis
Data extraction
Quality appraisal
“GPs in my experience are often very scared of complex cancer patients. They don’t have the training; they don’t know what to do.” (Patient)
The need for shared care protocols and guidelines
“[My] GP doesn’t go to international breast meetings.” (Patient)
“There’s nothing formal…[We’re trying] to develop something formally so that we could hand it back to a primary care provider and say, ‘Okay, these are your guidelines, make sure in year 1 that this is done, this is done.” (Oncologist)
Perceived lack of GP knowledge and need for GP training
B – patients lack confidence in GP knowledge and skills
F – patient confidence increases with GP training
B – lack of guidelines
F – clear guidance for GPs around follow-up
“We don’t have systematic ways to follow-up. We all do follow-up very differently since there’s no written guidelines.” (HCP, not specified)
Patient-provider relationships
B – Reluctance to leave oncology team
F – established, long-term relationship with trusted GP
“I know that all of the different hospitals and all the different departments within the different hospitals are working on care plan models. My concern is that what we’re going to have is 100 different care plans that don’t talk to each other and what I would like to see is one model that everybody can link in to.” (HCP, not specified)
“I like to see my particular surgeon for follow-up because we’ve had a bond over the past seven years now.” (Patient)
Need for consistent policy
B – Differences across settings impedes care coordination
F – Top-down policy to standardise and streamline care
“You’ve often got quite a good bond after five years or so of treatment, of knowing one another, and to break that is always difficult and I think that’s why we tend to follow patients more than we need to…” (Radiation oncologist)
• Total 22 participants
• 5 focus groups, 1 interview; mean time 1 hour 3 min; total 6 hours 19 min.
2. Focus groups
• Total 22 participants
• 5 focus groups, 1 interview; mean time 1 hour 3 min; total 6 hours 19 min.
PLANNING AND PROCESS CONSIDERATIONS• Rapid and accurate communication • The need for shared care protocols and guidelines• Care coordination• Adequate administrative support• Electronic medical records• Deciding where to implement shared care• How to design a shared care model• Implementing mechanisms for continued stakeholder feedback,
evaluation and improvement• Allowing time for cultural change
HCP CONSIDERATIONS• Perceptions of GP knowledge and need for further training• Clarity of roles and responsibilities of providers• Staff turnaround and lack of capacity• Engaging HCPs in shared care and role of clinical champion• Managing preferences of different providers
PATIENT CONSIDERATIONS• Benefits of shared care and patient acceptance• Patient’s relationship with their GP• Discussing shared care with patients early• Stratification of patients suitable for shared care
POLICY CONSIDERATIONS• Having consistent policy• Reliable and sustainable funding• Establishing accurate outcome data collection for a business case
Thematic analysis
Audio transcription
Results of thematic analysis: 21 themes
2. Focus groups
• Total 22 participants
• 5 focus groups, 1 interview; mean time 1 hour 3 min; total 6 hours 19 min.
PLANNING AND PROCESS CONSIDERATIONS• Rapid and accurate communication • The need for shared care protocols and guidelines• Care coordination• Adequate administrative support• Electronic medical records• Deciding where to implement shared care• How to design a shared care model• Implementing mechanisms for continued stakeholder feedback,
evaluation and improvement• Allowing time for cultural change
HCP CONSIDERATIONS• Perceptions of GP knowledge and need for further training• Clarity of roles and responsibilities of providers• Staff turnaround and lack of capacity• Engaging HCPs in shared care and role of clinical champion• Managing preferences of different providers
PATIENT CONSIDERATIONS• Benefits of shared care and patient acceptance• Patient’s relationship with their GP• Discussing shared care with patients early• Stratification of patients suitable for shared care
POLICY CONSIDERATIONS• Having consistent policy• Reliable and sustainable funding• Establishing accurate outcome data collection for a business case
Thematic analysis
Audio transcription
2. Focus groupsResults of thematic analysis: 21 themes
B – slow, missing, broken communication between HCPs
F – direct communication channels between providers
“We’re trying to help the GPs, there is an awful lot on ‘here are ten ways to get in touch with us and feel free to do so’…there are fax numbers, here’s a phone number, call the registrar, and in the end my name’s signed there and people can phone me.” (Oncologist)
“Very importantly they [GPs] also have to feel that they can quickly get advice if needed.” (GP)
“I think a lot is about tapping into their existing skills already and just providing very clear guidance about that individual patient that is there when they need it. And then GPs make use of that very specific information well, they don’t need to go to lots of workshops.” (GP)
B – mandatory training for GPs
F – guidance and contacts rather than formal training for GPs
Rapid and accurate communication
Perceptions of GP knowledge and training
F – early discussion of shared care better prepares patients
“That’s really important, yeah, because it can be quite a… it’s like a separation for the patient… and they need to be prepared that, you know, at what point their care will shift into either a shared care model or an entirely primary care level.” (Allied health)
Discussing shared care with patients early
“Getting GP engagement is the biggest issue that we had. Like we held multiple forums and hardly anyone would attend.” (Nurse)
Engaging HCPs in shared care and role of the clinical champion
B – lack of engagement, particularly GPs
F – strategies to engage HCPs
F – clinical champion to promote shared care and lead by example
“We’ve really engaged some champion doctors and that’s been wonderful, so we have some oncologists that are brilliant at referring to us, and also increasingly surgeons that are becoming far more initiators of referrals.” (Project manager)
3. Guidance
• Based on combined results, developed 33 recommendations for:• Design, planning and process
• Health care professionals
• Patients
• Policy
• Polled HCPs (n=40) on importance of each guideline • 5 point scale from 1-Not at all important to
5-Essential
• 18 recommendations considered VERY IMPORTANT or ESSENTIAL by ≥75%
%
PLANNING, DESIGN AND PROCESSEstablish rapid referral pathways to oncology providers if recurrence or other serious events are suspected. Rapid re-access procedures should be clearly documented in a letter or SCP and communicated with patients.Provide GPs with clear and concise guidance regarding cancer follow-up care, including timelines, actions required and re-entry procedures if recurrence is suspected. This may be in a letter or SCP.
HEALTH CARE PROFESSIONALSProvide a direct line of communication between primary care and hospital-based providers. This may be via direct phone numbers or email addresses.Involve GPs as part of the shared care team from the point of diagnosis onwards.Identify a senior clinical lead to act as a champion for shared care, and to provide leadership and set an example for others.
PATIENTSDiscuss shared care with patients early so they know to expect shared care and consider it standard.
POLICY Advocate for a policy environment that supports shared care as standard care.Advocate for sustainable funding mechanisms to support shared care.
100%
100%
97%
95%90%
90%
87%85%
% V. important/ Essential (n=40)
IMPLICATIONS FOR PRACTICE AND POLICY
