Tactics for Implementation of Patient-Led Survivorship Care
Patient-Led/Patient Initiated Follow-Up (PIFU) aims to personalize health care service delivery to the patient needs and limits the requirement to attend routine follow-up appointments that may be of little clinical value. A rapid review on Patient Initiated Follow-Up (PIFU) across diverse chronic conditions including cancer noted little or no difference between PIFU and standard pre-scheduled FU pathways on quality of life, anxiety, including fear of recurrence of cancer, satisfaction, or experience (97). Additionally, a Cochrane review of PIFU in chronic disease that also included cancer, found little or no effect on patient anxiety, depression, quality of life, service utilization, relapse or patient satisfaction compared to consultant‐led appointments.
We identified a few studies of PIFU in oncology survivorship and most of these models of care have been operationalized in European countries. PIFUs are emerging as an alternative for patient follow-up in personalized models of care that have fully operationalized risk-stratified care, but further research is required to determine effects on survivor outcome, provider outcomes, and health care costs. Similarly to our evidence review, a review specific to cancer found limited evidence for PIFU and non-inferiority on recurrence detection or patient related outcomes when compared to any other model of follow-up survivorship care, however, most studies were conducted in breast cancer (99).
The National Health Service (NHS) in the United Kingdom as part of their personalized care approach established patient-initiated follow-up for people with long term conditions including cancer, which is defined as when a patient, or carer can initiate follow-up appointments as needed and avoid appointments of low clinical value (100,101). Other names used for PIFU include open access follow-up, supported self-managed follow-up, patient-triggered follow-up, self-management follow-up or patient activated care (100, 101). Supported self-management is an essential component of PIFU. PIFU is part of personalized risk stratified follow-up pathways in the UK and is only considered appropriate for survivors with low intensity of care needs, are at low risk of cancer recurrence and relapse, are activated to manage their own health, can coordinate their own care, and understand their condition and signs indicative of a need for re-entry in health care. The NHS standard operating procedures required for PIFU are as follows:
identification of the appropriate low risk patients
stratified pathway managed care
clear mechanisms for patient re-entry back to cancer care
available clinic slots to patients who re-initiate care
effective communication with patients and supported self-management
strategies to mitigate risks and health inequities
mechanisms to monitor compliance
staff education and able to support patient activation in self-management and monitoring of their condition, etc.
appropriate systems to track patients and prompt follow-up surveillance as appropriate to cancer type and treatment exposure.
The expert panel noted the following considerations for implementation of patient-initiated follow-up models of care:
Assessment of patient's ability to self-monitor their care, and their capacity to lead their own survivorship care (e.g. attention to specific equity-seeking groups and health literacy).
Effective education such that patient is skilled in self-monitoring, recognition of relapse and activated in self-management of disease and health.
Access to resources in place to support the patient. This includes access to specialist centres, healthcare providers and remote monitoring using tools such as smartphones.
Supported self-management is identified as an essential component of PIFU models in the UK and has been identified as a core element for all models of survivorship care (43). A recent realist review identified key criteria necessary for facilitating health care practitioners to deliver self-management support in adult cancer survivors including: (1) knowledge and coaching skills, (2) a clear understanding of their self-management support role and responsibilities, (3) organisational strategies to support delivery of self-management support and (5) health system configuration to enable integration into routine care (102). The mechanisms facilitating practitioners to support self-management were practitioner confidence, mutual trust and shared responsibility between practitioners and cancer survivors, organisational prioritisation and ease of delivery of self-management support. The Multinational Association for Supportive Cancer Care, Global Partners in Self-Management recently put out a global call to action for integration of self-management support in routine care and identified 6 essential actions on a roadmap to be taken for integration of self-management support (103). The following actions were recommended for integration of SMS in routine care and is applicable to survivorship services as identified below:
Action 1: Assess self-management capacity of individuals to personalize SMS to levels of activation; and prepare patients for active involvement in care.
Action 2: Embed SMS into everyday practices and care pathways.
Action 3: Upskilling of clinicians in SMS and behaviour change coaching.
Action 4: Foster accountability for SMS as a performance metric.
Action 5: Advance evidence on the effectiveness of SMS on cancer and health outcomes.
Action 6: Expand reach and access to SMS across care sectors including the community.