PROMS TO FACILITATE SHARED DECISION MAKING

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)

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:

1. 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

2. Option Talk: "Let's compare possible options."

   • Discuss suitable alternatives (including do nothing, if appropriate)

   • Use risk communication techniques

   • Help set expectations

3. 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.

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.

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.