Example 6: Amsterdam UMC, the Netherlands – outpatient

Area of PROM use: PROMs are used at the individual patient level in clinical care: clinicians and patients discuss results during (outpatient) consultations. This supports screening and monitoring of health status, promotes patient-centred care, and guides clinical decision-making..

Target groups: From November 2019 to December 2023, the Amsterdam PROM Expertise Center (PEC) supported 61 patient groups (e.g., HIV, diabetes, multiple sclerosis, lung cancer, head and neck cancer) in implementing PROMs as part of routine clinical care.

Selection of instruments: We first identify which PROs are most relevant for the patient group, drawing on the literature, HCP experience, and patient input. We then advise on suitable PROMs to measure those PROs—so the final instrument set depends on the specific healthcare team

Where possible, we recommend using generic PROMs (e.g., EORTC QLQ-C30 or PROMIS), aligned with the Netherlands’ 2022 introduction of generic PROM set supported by the Ministry of Health (see Oude Voshaar et al.).¹ When needed, disease-specific PROMs are added; for example, in head and neck cancer the EORTC QLQ-HN43 is used alongside the EORTC QLQ-C30.

Assessment frequency: We advise PROM administration no more than four times per year, but this also depends on the team’s workflow.

PEC implements ePROM the EHR (Epic), providing integrated, automated PRO data collection. In 2019, the Amsterdam UMC board decided to use a single system. It is now policy that all HCP teams at Amsterdam UMC collect PROMs through Epic.

Since 2011, PROMs have also been implemented via the stand-alone KLIK portal (http://www.hetklikt.nu/). KLIK remains in use in Amsterdam UMC paediatrics and in >45 other Dutch hospitals.

Implementation guidance: PEC is crucial to PROM implementation success in our hospital, as we guide every step (registration, design, preparation, implementation).

Key facilitators: A key component is HCP training, covering both theory and practical skills. Evaluation sessions with the healthcare team are also important to monitor progress.

For patients, it must be clear why they are asked to complete PROMs. The most important success factor is whether PROM results are actually discussed during the consultation.

HCP education: HCP training is essential, because score interpretation is covered in these sessions. We also provide a team-specific factsheet describing each PROM used for the specific team (construct, number of items, scales, scoring, and interpretation).

Display of PRO data: Scores are visualized electronically in Epic using colours, graphs and tables. Using the generic PROMIS system also simplifies interpretation, since all PROs are reported on the same scale (see van Muilekom MM et al.).²

During intake, PEC maps the team’s clinical workflow; based on this, it is decided who discusses PRO data. Most often this is the medical specialist, but it may also be a nurse or paramedic. PROMs are discussed during the (outpatient) consultation.

This depends on the data and what is needed. The HCP themselves can provide advice, or a referral might be needed.

Currently, patients can only view their question responses; they do not see scores unless the HCP shares them in consultation.

We are studying patient preferences for PRO feedback and may expand patient-facing displays/tools based on the results. For now, we train HCPs to interpret and discuss PROM data with patients.

• Secure board-level support.
• Use evidence-based PROM visualisations for HCPs.
• Identify a team champion
• Run training and evaluation sessions
• Involve all team members early
• Clearly communicate the purpose of PROMs to patients
• Use generic PROMs where possible, and add disease-specific PROMs when needed

¹Oude Voshaar M, Terwee CB, Haverman L, et al. Development of a standard set of PROs and generic PROMs for Dutch medical specialist care: Recommendations from the Outcome-Based Healthcare Program Working Group Generic PROMs. Quality of Life Research. 2023:1-11.
²van Muilekom MM, Luijten MAJ, van Oers HA, Terwee CB, van Litsenburg RRL, Roorda LD, Grootenhuis MA, Haverman L. From statistics to clinics: the visual feedback of PROMIS® CATs. J Patient Rep Outcomes. 2021.