10. Patient-Reported Outcome-based self-management of patients
Strategies for self-management support
Suggestions and examples to incorporate self-management support in your clinical practice:
Patients’ motivation and ability to engage with and actively process information can be enhanced by recommendations and guidance from HCPs
Information should be
- reliable
- easy to understand
- tailored to the patient's informational needs (e.g. rehabilitation, financial assistance/benefit schemes, self-help or patient advocate groups)
- easily accessible (paper-based or digital, e.g. providing links to reliable sources, integrating information in PRO assessment portal
Examples for information fact sheets:
- “What should I bear in mind during radiotherapy?” including information about skin reactions, references for preventive skin care and explanations in which cases a hospital admission might be necessary
- “Could my stool problems be related to my pain medication?” including information about constipation and recommendations for preventing or treating the problem
Examples on websites, which provide self-management support information fact sheets:
There are also platforms with professional educational material, contact information for a variety of health and support services and videos for patients:
customised to
- disease/treatment-specific needs (e.g. diet, parenteral nutrition, stoma care, skin care)
- PRO data of the patient (e.g. management of reported symptoms)
Examples of websites, which provide this kind of information and instructions:
Examples for information about available resources:
includes emotional, practical and informational support.
Facilitation of social support comprises
- assessment of the social situation and supportive needs (e.g. via PROMs)
- encouragement to seek and accept support within the private social network (e.g. family member, friends, neighbours)
- enabling contact to peer groups, self-help groups, etc.
- providing professional support (e.g. household chores, transport services)
Examples:
various buddy programs exist e.g. Finding a Support Buddy | Cancer.Net (US)
special offers for e.g. the LGBTIQ+ community OUTpatients - LGBTIQ+ Cancer Charity (UK)
includes
- enabling patients to complete PROMs (e.g. through an online portal if available)
- motivating patients to review their results to track changes (e.g. graphic display also available for patients)
- supporting patients to interpret their results by providing information on relevance of symptom levels calling for self-management or clinical attention (e.g. by comparing the results with thresholds or reference data if available)
- providing PRO-based self-management recommendations
Tailored self-management recommendations can be provided directly, without the need for a separate consultation, thereby reducing the need for patients to actively seek out information. Self-assessment and self-monitoring complement regular consultations with HCPs but do not replace them.
offer an opportunity to
- (re)assess symptom burden (e.g. assessed with PROMs) and supportive needs
- seek clarification, ask questions and provide reassurance
- provide contact information and referral to support services if indicated
- strenghten patient's self-management competencies
- foster collaboration between HCPs and patients
“Self-management tools are incredibly important for the patient. I actually felt quite frightened when I came home from hospital after major surgery. [...] It would have been so reassuring to have access to a reliable website which set out at least the expected parameters [of my symptoms] [...].
All patients are different and it is important to somehow communicate that they may not experience all the symptoms listed. Some, like me, want more factual information on physical aspects of treatment whereas others may want more support with psychological issues.”
Pearce et al. 2015; Lehmann et al. 2020; Lubberding et al. 2015