PROMS TO FACILITATE SHARED DECISION MAKING
THE OBJECTIVE of this page is to collect resources and provide demonstrations of how Patient Reported Outcome Measures (PROMs) can be used to facilitate Shared Decision-Making (SDM).
WHAT ARE PATIENT REPORTED OUTCOMES (PROMs?)
Patient-reported outcome measures (PROMs) are instruments designed to assess health outcomes or symptoms reported by patients. PROMs could take on many forms, from simple questions assessing general health or specific symptoms such as pain, to multiple questions that measure general well being or health-related quality of life.
Generic PROMs are designed to assess general aspects of health that are not specific to a particular disease (e.g., EQ-5D, SF-36, QWB, and PROMIS to name a few), while disease-specific PROMs assess aspects of health that are specific to a given disease (e.g., HAQ, Oxford Hip/Knee score, WOMAC, EORTC-QLQ-C30, and PHQ-9 to name a few).
While PROMs are widely used in research studies, to determine the effect of treatments or strategies, in the context of shared-decision making we are referring to their use in routine practice. This can vary from:
Large scale system level initiatives to monitor quality (such as the NHS PROMs or CIHI PROMs initiative)
Funding requirements (where patients need to meet a certain threshold on a PROM for surgery or treatment)
Routine care (where a patient is asked to routinely fill out a questionnaire or report their symptoms)
WHAT IS SHARED DECISION-MAKING (SDM)?
SDM is an approach where clinicians and patients make decisions together, using the best available evidence to deliberate about the likely benefit and harms and where patients are supported to arrive at informed preferences.
Elwyn et al. describe SDM using the 3 talk model:
Team Talk: "Let's work as a team to make a decision that suits you best."
Explain why you need to work together
Help recognise a decision needs to be made
Ask about goals
Understand patients context
Option Talk: "Let's compare possible options."
Discuss suitable alternatives (including do nothing, if appropriate)
Use risk communication techniques
Help set expectations
Decision Talk: "Tell me what matters most to you about this decision."
Get informed preferences
Help link preferences with alternatives
Make preference based decisions
A great training resource for learning shared decision-making is available here.
HOW DO PATIENT DECISION AIDS HELP?
Patient Decision aids are interventions that can enable shared decision-making by supporting patients by making their decisions explicit, providing information about options and associated benefits/harms, and helping clarify congruence between decisions and personal values. Decision aids can be provided to patients before a clinical encounter, or used within an encounter (sometimes called discussion aids). A systematic review identified over 100 trials of decision aids, and overall seem to make patients more knowledgeable, better informed, feel clearer about their values, have more accurate risk perception, and promote a more active role in decision-making. A repository of decision aids is available here.
HOW CAN PROMs FACILITATE SDM.. AND PROMOTE UPTAKE OF PROMs?
Below we use the three talk model to describe some approaches that PROMs can support SDM. However, let's first consider why.
Many PROMs initiatives ask patients to spend their time filling in questionnaires, or reporting symptoms on apps, however offer little benefit to patients themselves.
Using PROMs can support SDM and provide a benefit to patients - sufficient that they would be willing to continue reporting their symptoms or outcomes, providing the data to support system level performance and research, while at the same time providing patient-centred care.
There are many other factors and barriers to why a patient might report a PROM - considering the value judgement for patients is thought to be critical to obtaining high response rates.
1. USING PROMS IN 'TEAM TALK'
Enhancing the conversation
PROMs are more than just scores, and the answers to individual questions can help facilitate the conversations about what decisions need to be made.
Recognize a decision needs to be made
By comparing your outcomes to others 'like you' (age, sex matched population norms), can help patients who are not doing so well recognize that they might need to consider treatment - or adhere to a treatment. And for patients doing well, or recovering, recognize that what they are experiencing is 'typical'. See an example here.
Understand experiences over a period of time
Clinicians often ask "how have you been?" and patients need to summarize months of experiences in a few short sentences. Routinely collected PROMs, if asked frequently, can show the patterns that inform the conversation.
2. USING PROMS IN 'OPTION TALK'
Use PROMs to compare outcomes of treatment options
If the evidence for a treatment's benefit uses the same the same language as a PROM the patient has just completed, it can be easier for a patient to understand the outcomes.
Set expectations for how a treatment might work in the future
Using PROMs from other people 'like you' (similar baseline score, and age, sex matched) enables patients to see what happened to other people who faced the same decision. To see an example, click here.
Understand if a current treatment is working by viewing PROMs over time
Looking together at how a treatment has been working can help patients and their clinicians understand if continuing a current treatment is the right option, or whether an alternative is worth exploring.
Use risk communication strategies based on PROMs results
Help patients understand the probabilities that a treatment might work by using icon arrays linked to PROMs. To learn how these can be made, see this example.
3. USING PROMS IN 'DECISION TALK'
Link outcomes with values
Not all outcomes are the same, and while we want all aspects of our health to improve, often we have to make trade-offs. PROMs can help facilitate those conversations by asking which aspect matters most
Make preference sensitive decisions
By matching what outcomes matter most to what treatments impact each outcome, patients can be helped to develop treatment preferences.
Reduce the burden to a making a shared decision
Shared decisions can take longer than typical consultations, but using PROMs can facilitate the conversations and reduce the burden on patients.
If you have further examples that would be helpful to this page, please contact us. If you would like to develop some tools like those shown here, we have developed an open source platform (www.decideapp.org) that enables people to create their own.