PROMs

Question 1

What is CPROR?

Answer 1

Centre for patient reported outcomes research.
They aim to ensure that the patient perspective is at the heart of health research and the NHS decision making.
They also aim to optimise the use of patient reported outcomes (PROs) in clinical trials and routine care, to improve service delivery, enhance patient care and outcomes.

Question 2

What are PROs?

Answer 2

Patient Reported Outcomes (PROs) . These are any report of the status of a patients health condition that comes directly from the patient without interpretation of the patient response by a clinician or anyone else.

Question 3

What are PROMs?

Answer 3

These are Patient Reported Outcome Measures (PROMs). These are the tools or instruments used to measure PROs: this turns subjective experiences into numerical scores that can easily be utilised.

Question 4

What is quality of life?

Answer 4

This is a multi-dimensional concept that includes domains related to physical, mental, emotional and social functioning.

Question 5

What is Health Related Quality of Life (HRQoL)?

Answer 5

This is the impact of treatments and disease processes on these holistic aspects of a person’s life.

Question 6

HRQoL is described as multidimensional, what aspects does this include?

Answer 6

PHYSICAL FUNCTION - mobile dexterity, range of movement, physical activity, activities of daily living.
SYMPTOMS - pain, nausea, appetite, energy, vitality, fatigue, sleep, rest.
GLOBAL JUDGEMENTS OF HEALTH
PSYCHOLOGICAL WELL-BEING - psychological illness eg anxiety, depression, coping, positive well-being and adjustment, sense of control, self esteem.
SOCIAL WELLBEING - family and intimate relations, social contact, integration, social opportunities, leisure activities, sexual activity and satisfaction
COGNITIVE FUNCTIONING - cognition, alertness, concentration, memory, confusion, ability to communicate
PERSONAL CONSTRUCTS - satisfaction with bodily appearance, stigma, life satisfaction, spirituality
SATISCACTION WITH CARE

Question 7

What are the different t types of PROMs?

Answer 7

PROMs can be Generic or disease specific. They can be unidimensional or multidimensional.

Question 8

What is the difference between generic and disease specific PROMs?

Answer 8

Generic proms can be used in any patient population (eg short form 36) whereas disease specific proms are for a particular condition (eg Oxford hip score).

Question 9

What is the difference between unidimensional and multidimensional PROMs

Answer 9

Unidimensional PROMs focus on symptoms or domains (eg Pain: Brief Pain Inventory (BPI)) whereas Multidimensional PROMs focus on the global health related quality of life (eg EuroQol).

Question 10

What is EQ-5D?

Answer 10

EQ-5D is a generic, multidimensional PROM.

Question 11

Why is the patients perspective so important?

Answer 11

• Because the burden of their symptoms and the psychological impact is often under recognised.
• Quality of life may be more important than the quantity
• Improvements in patient-clinician communication (shared-decision making)
• Patients and clinicians often have different priorities and perspectives. eg in a survey conducted, patients reported that their appetite loss and fatigue were a lot worse than that reported by doctors.

Question 12

Why are PROMs important in clinical trials?

Answer 12

At the study end point, PROMs provide clinically meaningful information, particularly when where are minimal differences in survival or treatments have different side effects.
PROMs can be used to monitor adverse events eg death, BP, Anxiety, Pain ect..
Economic evaluation eg QALY

Question 13

How are PROMs useful in routine clinical practise?

Answer 13

PROMs inform and guide patient-centred care and clinical decisions.
PROMs can improve outcomes -research shows routing collection of PROMs as part of cancer therapy and follow-up may positively impact the survival and QoL of cancer patients.
Increase patient satisfaction with care (as learn what patients need and think)
Leads to less frequent healthcare visits
There are NHS PROMs programs in - hip replacements, knee replacements, groin hernia and varicose veins.

Question 14

If PROMs are good, why are they not used routinely?

Answer 14

TIME (patients, NHS staff, paperwork ect..)
Don’t want to / Lazy
Don’t understand PROMs / or how to interpret them
COST

Question 15

What are the key considerations when deciding what PROM to use?

Answer 15

• Rationale for HRQL assessment
• Rational for choice of instrument (which PROM)
• When, how and where data will be collected
• How mission data will be avoided and dealt with
• How data will be analysed and how the results are interpreted
• How the study will be reported and how it will inform clinical practice.

Question 16

What is the selection criteria when deciding what PROM to use?

Answer 16

1. APPROPRIATNESS - Is the instrument content appropriate to the questions which the application seeks to address?
2. ACCEPTABILITY - Is the instrument acceptable to patients? (length of survey ect..)
3. FEASIBILITY - Is the instrument easy to administer and process?
4. INTERPRETABILITY - How interpretable are the scores of the instrument?
5. PRECISION - How precise are the scores of the instruments?
6. RELIABILITY - Does the instrument produce results what are reproducible and internally consistent?
7. VALIDITY -Does the instrument measure what it claims to?
   (difficult to get PROM both reliable and valid)
8. RESPONSIVENESS - Does the instrument detect changes over time that matters to patients?