Table 4 Overview of barriers and facilitators for data collection of PROMs in specialist palliative care settings
Level | Theme | Subtheme | Barriers | Facilitators |
|---|---|---|---|---|
Patient level | Patient-related factors | Patient condition | Uncertainty about disease progression in this patient population | Patients in earlier disease phases (in better health) |
Overburdening of patients | Brief assessments to reduce burden on patients | |||
Cognitive impairment/problems focusing | ||||
Patient awareness | Patient’s ignorance of their prognosis | Patients understand meaningfulness of PROMs assessment | ||
Cultural differences | Language and cultural barriers (e.g. gatekeeping by family) | Culturally adapted and validated tools | ||
Unwillingness to participate | Higher educational degree or urban residency | |||
Management level | Data collection processes | Person-assisted PROMs assessment | Time consuming | Possibility to explain questions increases completeness of data |
Data validity issues arising from differing person-assisted assessment methods | Patients enjoy the conversation | |||
Technology-supported data collection | Poses greater difficulty for most patients’ self-assessments | Facilitates assessment for relatives and some patients | ||
Digitalised PROMs results give a comprehensive overview of health status | ||||
Assessment moment | Difficulty to identify the ideal timing for data collection | Integration in anamnesis interview is possible | ||
Lengthy questionnaire makes it difficult to complete assessments in a single session1 | ||||
Management, healthcare professional and patient level | PROM instruments | Content and characteristics of PROMs | Lengthy and repetitive questions1 | Short and clear questions |
Sensitive topics without adequate emotional support | Symptom-related questions | |||
Simplicity of PROMs | Complex questions (e.g. too much text, too vague) | Precise instructions | ||
Several questions within a single item (ICECAP-SCM) | Same scaling within PROMs1 | |||
Short reference time frame | ||||
PROMs preference | ICECAP-SCM: answer options not comprehensive (Q1,2,5,6,7) | IPOS: easy to understand and short | ||
EQ-5D-5L: irrelevant question (Q3 ‘Usual activities’) | ESAS: questions about symptoms | |||
Management and healthcare professional level | Staff perceptions | Effect on clinical care | No regular consequences based on PROMs results | Additional information on patients’ concerns is considered helpful |
PROMs are considered to have zero clinical impact or added value | Enables discussion about patients’ emotions | |||
IPOS/ESAS: helpful for symptom management | ||||
Attitude towards PROMs | Concerns that PROMs lead to standardised procedures in routine clinical care neglecting patients’ personal needs | Importance of health assessments/quality-of-care assessment in palliative care is recognised | ||
Concerns regarding benchmarking across institutions based on PROMs results | Structured approach to assessing patients’ health/wellbeing helps inexperienced carers | |||
Management level | Organisational factors | Staff resources | Lack of time | Person-assisted PROMs assessment |
Insufficient training on the use and benefits of PROMs | Adequate training on the use and benefits of PROMs | |||
Single person responsible for PROMs data collection | Established positive patient relationship | |||
Care settings | Acute care setting | Outpatient or home care settings | ||
Differences in data collection without explicit guidelines | Efficiently organised data collection to streamline the process |