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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