Example 1: Radiation oncology department, University Hospital Halle, Germany - inpatient

Integrating the patient perspective: We wanted to benefit from embedding PROMs in routine clinical practice. Evidence shows that PROMs, as a complement to routine assessments, are feasible and acceptable to patients and HCPs. They support communication and integrate patient perspectives into decision-making, treatment and care – improving patient satisfaction and symptom management. Accordingly, international cancer-care guidelines recommend implementing PROMs in clinical practice.

Setting and patient groups: PROMs were implemented in inpatient radiotherapy care and offered to all patients admitted to the clinic, except those with severe cognitive impairment.

Which assessment instruments were chosen, why, and at which frequency?

An interprofessional focus group of HCPs from the clinic selected the PROMs based on HRQOL dimensions, care-pathway needs and feasibility within existing workflows. The resulting procedure was:

1. Hospital admission – comprehensive HRQOL assessment using established instruments

Selected PROMs:

• EORTC QLQ-C30 (HRQOL)

• QSC-R10 (emotional burden; previously paper-based to identify the need for psycho-oncological support, converted to electronic format)

2. Daily monitoring – tracking burden and changes in key symptoms during therapy

Selected PROMs:

• 11 core questions for every patient (appetite loss, constipation, diarrhoea, nausea, vomiting, insomnia, tiredness, weakness, skin problems, emotional burden, pain)

• additional diagnosis-specific questions from the EORTC Item Library for the six most common cancers: lung (3), head/neck (6), colorectal (3), brain (8), breast (8), prostate (7)

Questions were identified via the Item Library based on focus-group discussions, proposed by a responsible person and finalised by physician consensus.

3. Pre-discharge – assessment of HRQOL change since admission and identification of aftercare-relevant issues

• EORTC QLQ-C30

We chose electronic PRO assessment to facilitate clinical implementation through flexible access, automated scoring and graphical display of PRO data.

E-PROs are collected via:

Mobile tablets: handed to patients (e.g. while waiting for a room) and returned after completion.

Bedside monitors: fixed devices beside each bed, also used for entertainment (e.g. TV), with secure login via smart cards.

Touchscreen entry with automatic progression to the next question supports use even without prior IT experience.

We use CHES (Computer-based Health Evaluation System) to collect ePROs, including scoring, compiling and graphical display of results in the clinical record.

PRO assessment workflow overview:

The implementation was guided by the MRC framework for developing and evaluating complex interventions and consisted of three general steps with different phases within each.

Development: current practice was analysed to define the clinical procedure and identify implementation facilitators and barriers, using (1) clinical record analysis, (2) participant observation across professions and shifts, (3) a staff survey and (4) a patient survey. The PRO assessment procedure was then specified, guideline-based recommendations for handling relevant PRO findings were developed, and HCP training was delivered (group sessions on clinical use and implementation issues, on-site technical training and an e-learning course).

Integration into practice (three phases):

1. Initial phase: technical adjustments to ensure full functionality and integration with the clinical information system and electronic patient records.

2. Consolidation phase: optimising routine integration and identifying further adaptations to strengthen clinical use of ePRO and patient self-assessments.

3. Routine phase: ensuring a stable data flow and analysing resource needs to further support integration.

Five research assistants ensured that one person per day was available to instruct patients and document patient contacts.

Evaluation assessed:

• potential clinical benefit (symptom / supportive-care documentation in records among patients completing vs. not completing PROMs)

• feasibility / acceptance (completion rates and reasons for non-completion)

• required resources (time needed to explain / support completion)

Detailed methods and results are published.

Colour-coded ePRO results were displayed in real time in the electronic patient record as bar charts for single time points (cross-sectional) or multiple time points over a defined period (longitudinal).

For admission and pre-discharge assessments, colour coding uses thresholds for clinical importance (Giesinger et al., 2020). Because these thresholds yield only a two-colour classification (green/red) and clinicians wanted better prioritisation by severity, an additional cut-off based on general-population norms (Lehmann et al., 2020) was added to create a three-level display (green/orange/red). For symptom monitoring, where no validated cut-offs were available, equal tertiles of the EORTC QLQ-C30 scales were used to achieve comparable three-colour coding.

This display supports intuitive interpretation: green = no / little burden, orange = moderate burden, red = severe burden.

Cross-sectional display of one assessment time

Longitudinal display of multiple assessment times

Physicians and psycho-oncologists use PRO data individually to inform themselves and prepare for conversations with patients. Nurses review the data to identify and address complex care needs, for example as part of an oncology nursing consultation.

Our goal is to strengthen routine, interprofessional exchange about PRO data within the multidisciplinary workflow – an area that remains challenging.

We developed guideline-based, multiprofessional recommendations for nine symptoms (fatigue, nausea/vomiting, emotional burden, pain, sleep problems, appetite loss, constipation, diarrhoea, skin problems). They specify actions for moderate (orange) or severe (red) patient-reported burden, including PRO-based communication prompts (to clarify symptoms), further diagnostics (e.g. differential diagnosis), supportive measures and patient counselling on self-management.

Patients can view their PRO data on the bedside devices, and ward rounds provide opportunities to review and discuss them together.

We also developed patient self-management handouts for nine core symptoms (fatigue, nausea/vomiting, emotional burden, pain, sleep problems, appetite loss, constipation, diarrhoea, skin problems). They include PRO-based self-observation tips and general or symptom-specific measures for patients to carry out independently.

Prioritise quality over quantity: focus first on a workable, sustainable PRO assessment workflow that fits routine practice. Start with few, short, highly relevant PROMs to ensure a steady data flow, rather than many / long PROMs that overstrain resources and are implemented inconsistently. Expand only once the process is stable, and only if necessary and proportionate.

Communicate with honest realism: PRO implementation is demanding. Don’t “sell” it as easy or workload-neutral. Decision-makers need to do more than approve funding – they must actively support the change. HCPs need to be trained and to adapt their routines, which requires time, commitment and effort. Being transparent early may slow initial buy-in (and may even stop the project if resistance is too high), but it prevents false expectations, reduces later pushback and avoids wasted resources. Motivate by explaining why the benefits justify the effort.

Stay patient when engaging with interest-holders: interest-holder communication can be difficult because the project is rarely their top priority. Expect the need for repeated explanations, provide written summaries of discussions and respond to criticism calmly and factually. Don’t escalate emotions; acknowledge concerns, thank people for their openness and work toward solutions. Once concerns are voiced, discussions often become more constructive and solution-focused.