Table 1 Implementation guidance key recommendations

1

Identify the goals for collecting Patient Reported Outcome Measures (PROMs)

Measuring PROMs can serve goals on different levels (several are often combined):

Patient level goals: screening for symptoms and problems, monitoring of symptoms, aid decision making, facilitate communication with patients and within the team

Service/setting level goals: evaluate and improve the quality of care (e.g. services), demonstrate effect, promote good practice

Policy level goals: improving and monitoring palliative care practice on policy level (e.g. recommended routine collection and minimum dataset)

POS measures

Palliative care Outcome Scale (POS) measures can serve all discussed goals

2

Select patients, setting, and timing of assessment

Respondents: The ideal way to collect PROM data is patient report. In palliative care, this can be difficult, in which case proxy rating is used (family or professional). Measuring both patient and proxy ratings is ideal. Family carers’ own needs should be measured

Setting: Measurement can be done both within/outside the clinical setting and within/between visits

Timing: For screening PROMs are used once, for monitoring more often. Measurement frequency and questionnaire length should be related. Some argue that, ideally, no change in ‘window of measurement’ should be made. However, flexibility might be needed, e.g. following a change in situation or depending on patient preference

POS measures

POS measures have patient (all), family (POS), and staff (POS, IPOS) versions

Both screening and monitoring is possible

The measurement window of POS measures are either 3 ((APCA African) POS, IPOS) or 7 days (POS-S, IPOS). In practice, POS measures can be measured more flexibly, in response to clinical circumstances

3

Determine which questionnaire to use

Take several factors into consideration in choosing outcome measure e.g., aim of use, questionnaire available

Choose outcome measure based on evidence, with sound psychometric properties and suited for the clinical task

Use multidimensional (specific or generic) measures which allow for comparisons across settings and countries

POS measures:

POS (individual items and total score) has good psychometric properties. POS-S/APCA African POS are validated, IPOS is being validated

POS measures are holistic, translated, can be used in various settings and diseases and in clinical practice (e.g. to enhance patient management and as a quality improvement tool)

4

Choose a mode for administering/scoring the questionnaire

PROMS can be collected using self- and interview-administration, while computer-completion is efficient

Explain to patients why PROMS are helpful

Pilot the measure with a few patients

POS measures

There are several ways to administer POS measures: i) leave the measure with the patient (provide written or verbal information), ii) stay with the patient (patient self-completes or practitioner helps), or iii) integrate measurement into holistic assessment (staff version – for specialists only)

5

Design processes for reporting results

PROM results should be shared with other health care practitioners (who can provide assistance in how to respond to certain issues) and the patient (it can integrate them as active member of the team)

Decide how to present results, e.g. numerical info (easy to generate) and/or graphic representations (easy to interpret over time, but might be more difficult to integrate into standard workflow). Looking at scores over time is also important

Deal with (and anticipate on) missing data, which might be more prominent with long, paper/self-administrated PROMs and large sets. Avoiding missing data is difficult in advanced disease, but can be anticipated upon by quality control procedures (e.g. double checking). Recommendations have been developed for handling missing data (see MORECare Statement [109])

Store data in accordance with legal requirements

POS measures

Scores related to individual items and summary score can be generated. Summary scores highlight overall severity of needs, individual scores show where specific problems lie

When analyzing, check your data and note missing values

6

Identify aids to facilitate score interpretation

For measures responsive to change use (and determine) the minimum clinically important difference (MCID – distinguishes between clinically relevant and statistically significant changes

If available, published cut-off scores can help with interpreting scores

Guidelines or disease management pathways can be linked to PROM scores, but clear guidance is unavailable for many symptoms/topics. They are simple to understand, but do not provide information about clinical importance of scores for an individual

POS measures

The interpretation of scores is guided by clinical expertise and patient’s condition.

The MCID for the POS is a one-point change

7

Develop strategies for responding to identified issues

PROM scores should go into clinical notes, shared with clinicians/patients, and used to improve care and influence decision-making; exploration with patients can increase understanding but might be time-consuming

PROM scores might be integrated with other clinical data

Develop a routine for how PROM scores are used in ward rounds, team meetings, other consultations

POS measures

A Clinical Decision Support Tool for POS items information needs, family anxiety, depression, and breathlessness is developed

8

Evaluate the impact of measuring PROMs on practice

Precondition for successful implementation: use change management principles, facilitation, and communication to help embed PROM measurement in clinical practice

Take into account described facilitators/barriers during preparing, implementing, and evaluating PROM measurement in clinical care

Evaluate the impact of the PROM implementation, e.g. set up quality improvement initiatives (audits/benchmarking), use different (quasi/experimental) designs, evaluate implementation process, relate to quality indicators

POS measures

Ensure that staff is positive and see the added value of using POS, use a supportive training program to ensure routine uptake, and feed results back to sustain staff commitment