Download ERGs

Stockport Health and Care Outcomes
Personal Outcomes and PROM Tools
Review of January Expert Reference Groups
Feb 1st – ERG review call with Clinical Leads
Contents
Section
Overview, discussion points and next steps
Page
3
Voting and PROM tool comments per ERG
ERG 1 – Healthy and Acutely Ill
9
ERG 2 – Long-term Conditions
14
ERG 3 – End of Life
20
ERG 4 – Frailty and/or Dementia
24
Appendix – July ERG summary and CSOM reminder
31
Overview – January ERGs
• This slide pack summarises the discussion and votes at the four
Expert Reference Groups, which focused on Personal Outcomes
and PROM Tools.
• This is intended for use by the ERG Clinical Leads in order to
review any common areas across the four groups, and agree next
steps for the development of PROM tools in Stockport.
Discussion Points for call
•
Reflections on recent ERG workshops
•
Areas of overlap between ERGs
– Specific PROM tools for each ERG OR standard approach across the whole population?
•
Thoughts on approach to Personal Outcomes
– Option 1: Select from existing validated PROM Tools to capture personal outcomes
– Recognise this approach is not a perfect fit or bespoke – is it useable in Year 1?
•
Review next steps, e.g.
– Review of common tools, gaps, trade-offs
– Implementation questions
– Ability of Providers to influence selected Personal Outcomes
All ERGs – general comments
•
Disliked PROM tools that were too long or negatively worded.
•
Preference for holistic tools rather than a specific focus on anxiety,
depression or symptom control.
•
How could / should providers be able to act on the results e.g. to improve
service provision or if someone is severely depressed etc.
•
Greater clarity on which PROM tools are liked / disliked for completion, but
trade-offs and combinations of surveys still to be finalised.
Overlap across ERGs
ERG specific or whole population approach?
•
ERG3 (End of Life) had strong consensus on 2 PROM Tools.
– No crossover with other ERGs
– Different implementation since at end of life. Unlike other ERGs, these PROM tools will
be administered during clinical practice, or after bereavement
•
Broad outcomes: Mental Wellbeing / Quality of Life
–
–
•
Potential overlap between ERG 1, 2 and 4, particularly WEMWBS and EQ5D
If focused on >65s, potential for ERG1 to also consider OPQOL quality of life tool (ERG4)
Self-Management
– Both ERG 1 and 2 (Healthy and LTC) chose the Patient Activation Tool (PAM13)
– However, some questions e.g. medication are potentially less relevant to ERG 1
•
Specific outcomes:
– ERG 2: Benefits of PROM tools focused on long-term conditions (e.g. LTC6, LTCQ)
– ERG 4 (Dementia): Demqol is the only validated carer-reported tool for people with
Dementia (although not universally liked by ERG)
– ERG 4 (Frailty): Greater focus on pain, nutrition, depression and dignity
Overlap across ERGs
PROM Tool
Outcomes
Measured
Question areas
* Votes / Number of People Voting in ERG
Survey
Length
ERG 1
Healthy
*
ERG 2
LTC
*
ERG 4
Frailty
*
Total
votes
14 Qs
5 min
13 / 17
1 / 14
4 / 19
18
WEMWBS
Mental Wellbeing
Same as short version. Also includes
interest, spare energy, feeling good
/confident/loved/ cheerful
SWEMWBS
Mental Wellbeing
Optimism, usefulness, relaxation, coping,
relationships, control
7 Qs
< 5 min
7 / 17
4 / 14
9 / 19
20
SOS-10
(Schwartz)
Mental Wellbeing
Satisfaction, relationships, hopefulness,
interest, fun, forgiveness, life progression,
handling conflict, peace of mind
10 Qs
< 5 min
9 / 17
4 / 14
N/A
13
EQ-5D
Quality of Life
Mobility, self-care, usual activities,
pain/discomfort, anxiety/depression
5 Qs
< 5 min
10 / 17
4 / 14
3 / 19
17
WHO-5
Quality of Life
Cheerfulness, calmness, relaxation, activity,
freshness, rest, interest
5 Qs
< 5 min
4 / 17
9 / 14
0 / 19
13
OPQOL
Older People’s
Quality of Life
Quality of life, enjoyment, happiness,
anticipation, low mood, energy, pain, home
responsibilities, mobility, support, social
contact, relationships, independence,
financial, control, safety, pleasure, optimism,
social activities, involvement, work,
responsibilities
35 Qs
15 min
x
x
5 / 19
5
PAM-13
Self
Management
13 Qs
3 min
11 / 17
9 / 14
0 / 19
20
Self-responsibility, confidence, medication
knowledge, lifestyle, prevention knowledge
Next steps?
• Review cross-over between ERGs 1, 2 and 4
• Review any gaps in personal outcomes and how to address
– OPQOL for ERG 1
– Validated sub-sections of longer surveys
• Trade-offs discussion for each ERG (overlap / time)
 Select final list of PROM tools
• Collate implementation questions
– Accessibility e.g. pen/paper, visually impaired, cognitively impaired etc.
– Discussion with Quality Health supplier
– ERG 3 – how to extend VOICES national survey locally?
ERG 1
Healthy and Acutely Ill
ERG 1 PROM Tools
•
Personal Outcomes captured include:
– Self-management, quality of life, mental wellbeing.
•
Some crossover with ERG 2 and 4 (see slide above)
•
Trade-offs to be reviewed
– Potential overlap between WEMWBS and Schwartz
– Short versus long WEMWBS
•
Gaps: ERG felt that available PROM tools did not capture enough Personal Outcomes
– Opportunity to review OPQOL (from ERG 4) – shorter version also available
– Also validated sub-sections from other tools
ERG 1 – PROM Tool Voting
Total number of 17
people voting
Overlaps with other
ERGs:
• WEMWBS
• PAM-13
• EQ-5D
• SOS-10
• SWEMWBS
• WHO-5
N.B. PROM tools shown are the only tools which received votes at the ERG.
ERG 1 Voting - Top PROM Tools
PROM
Tool Name
Outcomes Measured
WEMWBS
Mental Wellbeing
(See short version. Also
includes interest, spare
energy, feeling good
/confident/loved/
cheerful)
Short
WEMWBS
Mental Wellbeing
(optimism, usefulness,
relaxation, coping,
relationships, control)
PAM-13
(Patient
Activation
Measure)
Self-Management
(self-responsibility,
confidence, medication
knowledge, lifestyle,
prevention knowledge)
EQ-5D
Quality of Life
(mobility, self-care,
usual activities,
pain/discomfort,
anxiety/depression)
SOS-10
(Schwartz
Outcome
Scale)
Mental Wellbeing
(satisfaction,
relationships,
hopefulness, interest,
fun, forgiveness, life
progression, handling
conflict, peace of mind)
Survey
Length
14 Qs
5 min
13
7 Qs
< 5 min
7
13 Qs
3 min
5 Qs
< 5 min
10 Qs
< 5 min
Advantages
Votes
11
10
9
•
•
•
•
Positive wording
Positive social wellbeing questions
Clearly set-out
Longer version useful for more social
aspects
• Positive questions about wellbeing
• Shorter and equally as valid than the
longer WEMWBS
• Good layout and design – includes n/a
• Self-management is a priority for >65s
• Questions are relevant to the Healthy
group – e.g. lifestyle changes
• Short, simple and easy tool
• References the activities of daily living
• References mobility
• Easy to complete, visually well set out.
• Liked the scoring system scale.
Drawbacks
• Does not cover all the personal
outcomes identified as priorities (July?)
• No N/A option
• Doesn’t cover enough personal
outcomes identified as priorities
• Perhaps more relevant to the LTC
population group
• Dislike word “patient” in the title
• Mainly health-focused
• Doesn’t include questions about social
wellbeing
• References to pain and anxiety
• Feels diagnostic/ clinical/ functional
• Wording is negative
• Some questions aren’t relevant or
difficult language e.g. psychological
health, forgiving self for failures.
• Doesn’t cover all personal outcomes
identified as priorities.
ERG 1 Voting – Other PROM Tools
PROM
Tool Name
Outcomes Measured
Survey
Length
Votes
WHO-5
Quality of Life
5Q
< 5 min
4
• Good breadth of coverage
• Does not cover enough items
designated as important
• Doesn’t cover independence
SF-12
Quality of Life
12 Q
< 5 min
2
• Covers several priorities
• Covers work, social contact,
purpose and pain
• Underlying negative language
• Best of depression outcomes
• Depression specific tool – therefore not
applicable
• Diagnostic
• Negative language dominates
Advantages
Drawbacks
HADS
Depression, anxiety
14 Q
5 min
BDI-II
Depression
21 Q
5 min
0
• Depression not considered to be a
priority for this segment
• Negative language
CES-D
Depression
20 Q
< 12 min
0
• Depression-specific tool
• Diagnostic tool not for our purpose
PHQ-2/
PHQ-9
Depression
2Q/9Q
3 min
0
• Depression specific tool
• Negative
GAD-2/
GAD-7
Anxiety
2Q/7Q
< 5 min
0
• Depression-specific tool
• Negative language
NHP
Pain, social contact
45 Q
10-15min
0
• Too long/negative
SF-36
Quality of life, pain, social
contact
36 Q
12 min
0
• Feels like an assessment tool
• Long
WSAS
Functional impairment
5Q
< 5 min
0
• Questions are negative/problem-oriented
2
ERG 2
Long-Term Conditions
ERG 2 PROM Tools
•
Personal Outcomes captured include:
– Self-management, quality of life, mental wellbeing, and impact of LTC.
•
Some crossover with ERG 1:
– Patient activation tool (PAM 13) prioritised. However, LTC6 was equally popular and is
focused on services/information/involvement in care (potential overlap with PAM 13?)
– Mental wellbeing / Quality of Life: WHO-5 preferred over WEMWBS / EQ5D
•
Less consensus on choice of specific PROM tools for LTC:
– Impact of long-term conditions / functioning spread across LTCQ, WHO-DAS, FANLTC
– Is functional impairment captured enough in the broad PROM tools?
•
Possible gaps to be reviewed
ERG 2 – PROM Tool Voting
Total number of 14
people voting
Overlaps with other
ERG votes:
• WHO-5
• PAM-13
• SWEMWBS
• SOS-10
• EQ-5D
• WEMWBS
N.B. PROM tools shown are the only tools which received votes at the ERG.
ERG 2 Voting - Top PROM Tools
PROM
Tool
Name
Outcomes Measured
Survey
length
WHO-5
Quality of Life
(cheerfulness, calmness,
relaxation, activity,
freshness, rest, interest)
EQ-5D
Quality of Life
(mobility, self-care, usual
activities, pain/discomfort,
anxiety/depression)
PAM-13
Self-Management
(self-responsibility,
confidence, medication
knowledge, lifestyle,
prevention knowledge)
LTC-6
Listened to, involved in
decision-making, wellinformed, support, selfmanagement
6Q
< 5 min
Short
WEMWBS
Mental Wellbeing
(optimism, usefulness,
relaxation, coping,
relationships, control)
7Q
< 5 min
SOS-10
(Schwartz)
Mental Wellbeing
(satisfaction, hopefulness,
fun, forgiveness, life
progression, peace of mind)
10 Q
< 5 min
5Q
<5 min
5Q
< 5 min
13 Q
3 min
Votes
Advantages
Drawbacks
9
• Positive and specific
• Questions measure what you would want
to measure for quality of life
• Good range of questions
• No measure of functionality
• Too general as a stand-alone tool
• More applicable to Healthy group?
4
• Covers pain – not covered elsewhere
• Short, easy to complete
• Has functionality
• Not very specific
• Too negative
• What if you don’t have
pain/discomfort with your LTC?
(e.g. diabetes)
9
•
•
•
•
• Questions quite wordy
• Negative point – have to be an
expert – implies you have to selfmanage
• No timescale
9
• Covers how you are feeling in the last 12
months
• Positive questions – looks at multidisciplinary approach to care
• Involves the person in joined-up planning
and communication
• Who can recall the last 12 months
of their life clearly?
• Provider/service-focused
• Potential crossover with PAM13
4
• Quick – covers anxiety/depression (but
not in detail)
• Covers how you are feeling in last two
weeks
• Missing confidence
• Too many questions
4
• Wellbeing questions
• Preferred to (S)WEMWBS
• Positive, covers physical and
psychological questions
• Possibly negative language?
• Don’t like questions around
psychological health and forgiving
yourself for failures
Positive wording
Self-management tool
Expert patient
Well linked to July outcomes
ERG 2 Voting - Other PROM Tools
PROM
Tool
Outcomes Measured
Votes
Advantages
Drawbacks
• Long
• Questions get more confusing as
you progress
• Didn’t feel person-centred – more
about your disease than you
20 Q
< 10 min
2
• Questions easy to read and understand
• Most could fill this in
• Broad range of questions – feeling safe,
lonely, activities etc.
Overall functioning
12 Q
5 min
2
• Good for functionality
• Asks about past month
• Negative
• Difficult
Pain, social contact
45 Q
10-15
min
2
• Seems fast to complete due to yes/no
answers
• Straightforward questions
• Good breadth of areas covered
• Duty of care raised to standard
potentially can’t meet
• Potentially negative
• Too long
26 Q
< 10 min
2
• Broad – physical wellbeing, selfmanagement, emotional wellbeing
• Covers social/family wellbeing
•
•
•
•
14 Q
5 min
1
• Short and positive
• Preferred Schwartz
20 Q
2-5 min
1
LTCQ
LTC impact on quality of life
WHO DAS
(12)
NHP
Survey
length
FANLTC
Quality of life, functional
impairment, social contact
WEMWBS
Mental wellbeing
PACIC-20
Self-management,
personalised care
Quite long
Negative wording
Only covers last seven days
What if you are acutely unwell?
• Too long
• No N/A option
ERG 2 Voting - Other PROM Tools (no votes)
PROM
Tool
Outcomes Measured
Survey length
Votes
Care coordination, personalised care,
well-informed
34Q 15-20 min
0
• Too long
• Focus on being assessed
Anxiety
2Q/7Q < 5 min
0
• Rejected due to length, layout or specificity of questions
Depression
21Q 5 min
0
• Too specific
CES-D
PHQ-2 /
PHQ-9
Depression
20Q < 12 min
0
• Too specific
Depression
2Q / 9Q 3min
0
• Rejected due to length, layout or specificity of questions
HADS
Depression, anxiety
14Q 5 min
0
• Good if you want to look at mental health specifically
• Too specific
Barthel
Disability
10Q 5 min
0
• Too disability-focused
WHO DAS
(36)
Disability, mobility, self-care, social
contact, meaningful activity
36Q 20 min
0
• Rejected due to length, layout or specificity of questions
SDS
Functional impairment
3Q < 5 min
0
• Not suitable for over-65s
WSAS
Functional impairment
5Q < 5 min
0
• Too specific
MMAS-8
Medication adherence
8Q < 5 min
0
• Rejected due to length, layout or specificity of questions
BPI
Pain
9Q 5 min
0
• Too specific and negative
PSEQ
Pain
10Q 2 min
0
• Rejected due to length, layout or specificity of questions
SF-12 /
SF-36
Quality of life / Quality of Life, pain,
social contact
12Q/36Q
<5/12min
0
• Rejected due to length, layout or specificity of questions
MHI-38
Quality of life, fear/anxiety,
depression
38Q
10-15 min
0
• Too long and negative
PACIC-26
Self-management, personalised care
26Q
2-5 min
0
• Too long
• No N/A option
PPCMCS
GAD-2 /
GAD-7
BDI-II
Comments
ERG 3
End of Life
ERG 3 PROM Tools
•
Strong consensus on 2 PROM Tools – IPOS and VOICES
•
•
•
•
No crossover with other ERG PROM Tools
Due to cohort, these PROM tools will be administered in clinical setting
Potential gaps in IPOS personal outcomes to be reviewed e.g. planning ahead
Considerations for implementation
–
–
–
IPOS also beneficial to support patients in clinical settings, including District Nursing
Staff training to roll out IPOS
How to expand VOICES locally (national survey – proxy tool)
ERG 3 Voting – Top PROM Tools
Total number of
14
people voting
PROM
Tool
POS/
IPOS
VOICES
Outcomes
Measured
Advantages
Drawbacks
Survey
length
Pain, depression,
fear/anxiety, quality of
life, symptoms, wellinformed
• Respectful to the patient/ family
• Includes consideration of friends/family
• User-friendly, covers a broad remit, and identifies
specific areas for clinical focus
• Like the Likert scale and space for free text
• Doesn’t cover all personal outcomes
directly e.g. dignity and distress, or
discussions about place of death
• Still heavily medicalised
11 Q
10 min
National bereavement
survey
• Could be therapeutic/ cathartic post-care
• Good for carers
• Covers a range of services/ aspects of care
• Long survey
• May not suit ‘older’ people
• Need to notify bereaved people before it
is sent out
tbc
ERG 3 Voting - Other PROM Tools (no votes)
PROM
Tool Name
Outcomes Measured
Votes
PROM Tool
Name
Outcomes Measured
Votes
GAD-2 /
GAD-7
Anxiety
0
WEMWBS
Mental wellbeing
0
BDI-II
Depression
0
SWEMWBS
Mental wellbeing
0
CES-D
Depression
0
EQ-5D
Quality of life
0
PHQ-2 /
PHQ -9
Depression
0
WHO-5
Quality of life
0
HADS
Depression, anxiety
FACIT-PAL
Quality of life
0
EORTC
Pain, quality of life, symptoms, social
contact
0
MSAS
Symptoms
0
ESAS
Pain, energy, depression, fear/anxiety,
quality of life, symptoms
0
BPI
Pain
0
PPCMCS
Care coordination, personalised care,
well-informed
0
PSEQ
Pain
0
POS-S
Mobility, pain, symptoms
0
PDI
Dignity & respect, support,
independence, burden
0
NHP
Pain, social contact
0
Disability
0
R-UCLA
Social contact
0
Barthel
0
ERG 4
Frailty and Dementia
ERG 4 PROM Tools – summary
•
•
•
Recognition of variety of people in this cohort, as well as the importance of their carers.
Voting showed a broad spread of preferred PROM tools for the Frailty and mild Dementia cohort.
For people with severe Dementia or cognitive impairment, Demqol was the only validated carer-reported PROM
tool, but only a third of the group voted for it.
Personal Outcomes prioritised for Frailty/mild Dementia (by number of votes):
•
Mental wellbeing (13) – preference for short SWEMWBS over long version
•
Pain (12)
•
Quality of Life (8)
•
Dignity, respect etc (6)
•
Nutrition (6)
•
Depression (6) – well known assessment tools were chosen.
•
Disability (5) – Barthel Index focused on physical/functional independence only.
Decision points / suggested next steps:
•
Review trade-offs (can’t have all these surveys due to time limitations)
–
–
–
•
•
Most voters had difficulty with trade-offs and did not take into account the maximum 20 minute restriction.
Some of the popular long surveys could standalone, or validated sections extracted e.g. OPQOL or PDI.
Some surveys in clinical use were well-known to ERG members and received individual votes but were not
prioritised for table discussion e.g. Barthel disability and depression tools. Consider if these outcomes covered
by broader tools?
Confirm decision on Demqol as carer-reported PROM tool for people with dementia
Potential overlap with other ERGs (EQ5D and SWEMWBS)
ERG 4 – PROM Tool Voting
Total number of
people voting
N.B. PROM tools shown are the only tools which received votes at the ERG.
19
ERG 4 Voting - Top PROM Tools
PROM
Tool
Name
Outcomes
Measured
Survey
length
Advantages
Votes
Drawbacks
•
•
•
DEMQOL
Quality of life
28 Qs
5-30 min
6
•
•
Tick-box means can be done quickly with help from a
family member or professional.
Holistic - covers a lot of outcomes for dementia group
Includes feelings and everyday life
•
•
SWEMWBS
Mental Wellbeing
7 Qs
< 5 min
9
•
•
WEMWBS
Mental wellbeing
OPQOL-35
Quality of life, social
contact,
independence
EQ-5D
R-UCLA
14 Qs
5 min
35 Qs
15 min
4
5
Simple and easy to use for frail/elderly people with
dementia
Good general wellbeing questions – comparable with
other segments
More practical to ask shorter version
Quite long, lots of questions
Concern about reporter bias if
completing by proxy - unsure how to
report on someone’s else’s emotional
state if they have severe dementia
(possibly a training issue?)
Couldn’t see it how it would work in
practice
•
•
Dislike ‘feeling useful’
Some people preferred longer version
•
•
Can be used by carers or patients
Longer WEMWBS gives better cover for anxiety and
depression than short version
•
•
Longer WEMWBS feels repetitive
More suitable for the general
population
•
•
•
•
•
Good cross-section of broad questions
Covers social isolation, depression, finance
Simple language so doesn’t feel long
Helpful for Provider/ population view
Mix of positive and negative statements
•
35 questions – too long to combine
with much else (shorter option
available)
Not suitable for those with severe
dementia
Quality of Life
5 Qs
< 5 min
3
•
•
•
Short and concise – picks up specific domains
Well set-out
Breaks down scale of problems more
Social contact
20 Qs
10 min
2
•
•
Covers loneliness – important area
Simple questions
•
•
•
•
•
•
•
•
Some prefer WEMWBS
Limited range of mobility options:
‘some problems’
Assumes low functionality
Tick box only
Missing nutrition
Too long / convoluted – 20 questions
on one area
Also covered in OPQOL
ERG 4 Voting – Top PROM Tools cont.
PROM Tool
Name
PSEQ
(Pain SelfEfficacy
Questionnaire)
BPI
(Brief Pain
Inventory)
Outcomes Measured
Pain
Pain
Survey
length
10 Qs
2 min
9 Qs
5 min
Votes
Advantages
Drawbacks
8
• Positively worded – focuses on what the
person can do despite being in pain
• Like the scale of responses
• Simple
• Maybe more appropriate to the LTC
group?
• Not everyone will be in pain – need
to identify pain first
• Not sure could do this in 2 minutes
4
• Like the responses on the scale
• Pain is under-reported and under-managed
for this cohort
• Broad – can be used by a range of people
• Wide-ranging
• A lot of questions about pain
• Quite specific – people may not be
in pain
• Asking about last 24 hours only
• Negatively worded
• Quite long – feels like it would take
a long time to complete
• Layout is a bit ‘busy’
• Negative wording
PDI
(Patient Dignity
Inventory)
Dignity & respect,
support, independence,
burden
25 Qs
< 10
min
6
• Asks good questions
• Easy to measure
• Holistic tool - includes anxiety, depression,
daily activities, meaning, control, feeling
supported, coping, respect etc.
• Would like to use this one on its own.
Barthel Index
Disability
10 Qs
5 min
5
• Professionals are used to this survey
• Usable with frailty
• Feeding and independence covered
• Physical / functional only
• Mental health not included
BDI-II
Depression
21 Qs
5 min
3
• Well-known and widely used
• Not widely discussed in ERG
GDS
Depression
15 Qs
5-7 min
3
• Well known and widely used
• Asks about loneliness and boredom
• Negatively worded questions
• Yes/No options only
SCREEN
Nutrition
14 Qs
< 10 min
5
• Nutrition is important in this cohort
• Easy to complete and specific questions
• Gives holistic view of patient and covers
key areas
• Quite long
MNA
Nutrition
18/6 Qs
< 10 min
1
ERG 4 Voting - Other PROM Tools (no votes)
PROM
Tool
Outcomes Measured
Survey
length
Votes
2 Q / 7 Qs
< 5 min
0
• Too specific
Comments
GAD-2 /
GAD-7
Anxiety
CES-D
Depression
20 Qs
< 12 min
0
• Specific to depression
PHQ-2 /
PHQ-9
Depression
2Q / 9Q
3 min
0
• Too specific
HADS
Depression, anxiety
14 Qs
5 min
0
PPCMCS
Care coordination, personalised
care, well-informed
34 Qs
15-20 min
0
• Some good questions – but too many
NHC
Nutrition
10 Qs
< 5 min
0
• Straightforward questions
• Doesn’t cover how much you drink/allergies
NHP
Pain, social contact
45 Qs
10-15 min
0
• Too many questions
5 Qs
< 5 min
0
• Covers quality of life and mental wellbeing
• Mostly about mood – difficult to assess
• Not sensitive enough
24 Qs
10-15 min
0
• End of life focus
• “My mum could do this”
19 Qs
<10 min
0
• Too generalised
13 Qs
3 min
0
• Too long/complicated for this population group
WHO-5
Quality of life
WHOQOLOLD
Quality of life, independence,
meaningful activity, social contact
CASP-19
Quality of life, independence,
meaningful activity
PAM-13
Self-Management
ERG 4 PROM Tool questions
Outcomes
Measured
PROM Tool
Question Areas
Survey
Length
Votes
(/19)
6
DEMQOL
Quality of life for
people with dementia
Anxiety, enjoyment, frustration, confidence, energy, sadness, loneliness, limitation, memory,
decision making, social contact, affection, listened to, wellbeing, quality of life.
28 Q
5-30 min
SWEMWBS
Mental Wellbeing
Optimism, usefulness, relaxation, coping, relationships, control.
7Q <5 min
9
WEMWBS
Mental wellbeing
As above. Also includes interest, spare energy, feeling good /confident/loved/ cheerful.
14Q 5 min
4
OPQOL-35
Quality of life, social
contact,
independence
Quality of life, enjoyment, happiness, anticipation, low mood, energy, pain, home
responsibilities, mobility, support, social contact, relationships, independence, financial,
control, safety, pleasure, optimism, social activities, involvement, work, responsibilities
35 Q
15 min
5
EQ-5D
Quality of Life
Mobility, self-care, usual activities, pain/discomfort, anxiety/depression
5Q <5 min
3
R-UCLA
Social contact
PSEQ
Pain
Companionship, loneliness, friendships, common interests, closeness, outgoing, isolation,
unhappiness, support
Despite pain- enjoyment, household chores, social contact, coping, working, leisure activities,
lifestyle, active
20 Q
10 min
10 Q
2 min
BPI
Pain
Pain severity, effect of treatment, impact on- general activity, mood, walking, working,
relationships, sleep, enjoyment
9Q
5 min
4
PDI
Washing, dressing, bodily functions, physical distress, low mood, anxiety, uncertainty, worry,
Dignity & respect,
clear thought, usual routines, worthlessness, roles, purpose, meaningful contribution,
support,
spiritual, burden, control, privacy, community support, healthcare support, coping,
independence, burden
acceptance, respect
25 Q
< 10 min
6
Barthel
Disability
Activities of daily living, bowels, bladder, grooming, toilet use, feeding, transferring, mobility,
dressing, bathing
10 Q
5 min
5
SCREEN
Nutrition
Weight change, weight perception, regular meals, food avoidance, appetite, fruit/veg intake,
dairy/fish/meat intake, fluid intake, swallowing, biting, chewing, supplements, eating alone,
meal preparation, grocery shopping
14 Q
< 10 min
5
MNA
Nutrition
Food intake, weight, mobility, psychological stress, acute disease, dementia
18/6 Q
< 10 min
1
BDI-II
Depression
Sadness, discouragement, failure, satisfaction, guilt, punishment, disappointment, selfcriticism, self-harm, tearfulness, irritation, interest, decision-making, appearance, motivation,
sleep, tiredness, appetite, weight loss, health worries, libido
21 Q
5 min
3
GDS
Depression
Life satisfaction, interests, emptiness, boredom, happiness, feeling afraid, helplessness, selfisolation, memory problems, worthlessness, energy, hopelessness
15 Q
5-7 min
3
2
8
Appendix
Personal Outcomes priorities from July ERG 1
(not all will be measurable through PROM tools)
I want…
• To be able to maintain existing lifestyle / activities
• To be independent
• To be well-informed
• To ‘feel good’ (wellbeing / happiness)
• To be proactive about staying healthy (e.g. regular health checks, managing weight)
• To feel supported, reassured, safe and secure
• To feel confident, motivated, empowered and useful
• To spend time with friends and family (social contact)
• To feel respected and not patronised by age
• To feel well and free of pain
• To recover back to ‘normal life’ and health when unwell
Personal Outcomes priorities from July ERG 2
(not all will be measurable through PROM tools)
I want…
• To be able to manage my condition – including when they exacerbate
• To know what I can do to improve my condition
• To remain independent and live the life I want
• To have access to information about my condition
• To have access to care/support, if and when required
• To spend time with friends and family (social contact)
• To feel in control and involved in any decision-making regarding my care
• To feel supported and reassured
• To feel well for as long as possible
• To know my peers who I can help and learn from
Personal Outcomes priorities from July ERG 3
(not all will be measurable through PROM tools)
I want…
Frequency
To be in control and be listened to (myself and my family)
22
To be kept informed / people being honest with me / plan ahead
12
To have my pain controlled /symptoms managed
9
To receive emotional and psychological support (me and my family)
8
To be comfortable / clean / at home
7
To maintain my dignity and be treated with respect / as an individual
7
To be with loved ones / not be alone
5
To not be a burden
2
Personal Outcomes priorities from July ERG 4
(…not all will be measurable through PROM tools)
I want…
• To be independent
• To be actively involved in my care (myself and my family/carer)
• To be in control (of decisions, my care, my life)
•
•
•
•
•
•
•
To live a full life (e.g. social life, hobbies, things I enjoy)
To have someone to talk to / not be alone
To stay in my own home / not be in hospital
To be listened to, and have my wishes known and respected
To be treated as an individual with dignity
To feel safe, supported and free from anxiety
To feel well / not be in pain
Reminder of 25 Clinical and Social Outcomes
Healthy (whole
population)
Reduce emergency
hospital admission
for acute conditions
that should not
usually require
admission
Increase people's
physical activity
Reduce obesity in
the population
Reduce smoking in
the population
Reduce alcohol
consumption in the
population
Long-Term Conditions
and Disability
Frailty and/or Dementia
Reduce premature deaths
in people with Serious
Mental Illness
Reduce smoking
Increase the amount of time
spent at place of residence
Reduce new pressure ulcers
at residence or hospital
Reduce obesity
Reduce serious falls
Reduce emergency
Reduce the incidence of
hospital admissions
delirium
Reduce exacerbations that Reduce the incidence of
require emergency hospital incontinence, urinary tract
admission
infections (UTIs) and severe
Reduce the number of days constipation
disrupted by care
Reduce the prevalence gap
Reduce strokes in people
of dementia
with diabetes and/or
Reduce emergency recirculatory conditions
admissions to hospital within
30 days of discharge
Reduce the complications
of diabetes
Improve recovery from
Increase early diagnosis
fragility fractures back to
of cancers
normal in 30 and 120 days
End of Life
Increase in people
dying in their
preferred place of
death
Increase in people
identified on the
Palliative Care
Register
Reduce the need
for emergency
hospital care during
last weeks of life