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NICE inherited this indicator and all its supporting documentation from NHS Digital on 1 April 2020 NHS Digital Indicator Supporting Documentation IAP00325 Health related quality of life for people with long-term conditions (NHSOF) IAP Code IAP00325 Title Health related quality of life for people with long-term conditions Published by NHS Digital Reporting period Biannual Geographical Coverage England Reporting level(s) CCG, National Based on data from GP Patient Survey Contact Author Name NHS Digital Clinical Indicators team Contact Author Email [email protected] Rating Assured Assurance date 13/09/18 Review date 28/04/19 Indicator set NHS Outcomes Framework Brief Description This indicator will help people understand whether health related quality of life is improving over time for the population with long-term conditions. Purpose This indicator seeks to capture how successfully the NHS is supporting people with long-term conditions to live as normal a life as possible. It will help people understand whether health related quality of life is improving over time for the population with long-term conditions. The indicator uses EuroQuol 5D (EQ-5D), which is a validated direct measure of health status or health-related quality of life that is used internationally. Definition Average health status (EQ-5D*) scores for individuals aged 18 and over reporting that they have a long-term condition. It assesses whether health-related quality of life is increasing over time for the population with long-term conditions, while controlling for measurable confounders (age, gender, disease mix, etc.). IAP00609 Supporting documentation Copyright © 2019 NHS Digital

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Page 1:  · Web viewHere, 44.15% of all respondents with learning difficulties have ≥ 3 concomitant LTCs. In conclusion, due to the small overall size of this patient group, and the fact

NICE inherited this indicator and all its supporting documentation from NHS Digital on 1 April 2020

NHS DigitalIndicator Supporting Documentation

IAP00325 Health related quality of life for people with long-term conditions (NHSOF)

IAP Code IAP00325Title Health related quality of life for people with long-term

conditionsPublished by NHS DigitalReporting period BiannualGeographical Coverage EnglandReporting level(s) CCG, NationalBased on data from GP Patient SurveyContact Author Name NHS Digital Clinical Indicators teamContact Author Email [email protected] AssuredAssurance date 13/09/18Review date 28/04/19Indicator set NHS Outcomes FrameworkBrief Description This indicator will help people understand whether health

related quality of life is improving over time for the population with long-term conditions.

Purpose This indicator seeks to capture how successfully the NHS is supporting people with long-term conditions to live as normal a life as possible. It will help people understand whether health related quality of life is improving over time for the population with long-term conditions.

The indicator uses EuroQuol 5D (EQ-5D), which is a validated direct measure of health status or health-related quality of life that is used internationally.

Definition Average health status (EQ-5D*) scores for individuals aged 18 and over reporting that they have a long-term condition. It assesses whether health-related quality of life is increasing over time for the population with long-term conditions, while controlling for measurable confounders (age, gender, disease mix, etc.).

Data Source GP Patient SurveyNumerator The sum of the weighted EQ-5D index values.

Health status is derived from responses to Q34 on the GP Patient Survey, which asks respondents to describe their health status using the five dimensions of the EQ-5D survey instrument: Mobility Self-care Usual activities Pain/discomfort Anxiety/depression

Denominator The denominator is the sum of the weighted responses for all patients responding to the GPPS who indicated in questions 30 and 31 that they had one or more LTCs. The denominator excludes responses to the GPPS that do not

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include valid age, sex or EQ-5DTM index value fields. 

Long-term condition status for individuals is obtained from ‘yes’ responses to Question 30 in the GP Patient Survey:

Question 30Do you have a long-standing health condition? a) Yesb) Noc) Don’t know / can’t say

Question 31Which, if any, of the following medical conditions do you have? Please x all the boxes that apply to you: Alzheimer’s disease or dementia Angina or long-term heart problem Arthritis or long-term joint problem Asthma or long-term chest problem Blindness or severe visual impairment Cancer in the last 5 years Deafness or severe hearing impairment Diabetes Epilepsy High blood pressure Kidney or liver disease Learning difficulty Long-term back problem Long-term mental health problem Long-term neurological problem Another long-term condition None of these conditions I would prefer not to say

Calculation Average EQ-5D score of those patients with a long term health condition

Interpretation Guidelines The indicator value can range from -0.594 to 1, from the worst possible HRQoL to the best possible HRQoL, respectively. An indicator value as close to 1 as possible, indicating a high HRQoL, is desirable.

Caveats 1. This indicator relies on a self-reported condition rather than a formal diagnosis. This could be considered an undesired behaviour on the part of the respondent.

2. Ipsos MORI provide a weighting factor for age, sex and deprivation and ethnicity but as yet haven’t looked into whether severity or numbers of conditions mean people are more likely to respond.

3. People with lots of conditions are more likely to have a worse quality of life than those with one condition.

4. there is a difference between approval for using EQ-5D and whether it is suitable for use.  The views of the Centre for Health Economics at York or Manchester group could be sought.

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Application Form

Set or domain NHS Outcomes Framework (NHS OF), Domain 2 – Enhancing quality of life for people with long-term conditions

Topic area Long-term conditions

Definition This application describes two related indicators; NHS OF Indicator 2 (IAP00325) and NHS OF Indicator 2.7 (IAP00431). NHS OF Indicator 2.7 is a subset of NHS OF Indicator 2 and as such, the evidence and policy base, data source and construction are very similar. Consequently, the two indicators have been included here as a single application.

Plain English description:

The directly-standardised mean EQ-5DTM score for adults aged 18 years and over who identify themselves as having one or more long-term conditions as indicated in the GP Patient Survey (GPPS)(NHS OF indicator 2/IAP00325).

The directly-standardised mean EQ-5DTM score for adults aged 18 years or over who identify themselves as having three or more long-term conditions as indicated in the GPPS (NHS OF Indicator 2.7/IAP00431).

EQ-5DTM is a measure of health-related quality of life (HRQoL). EQ-5DTM values can range from -0.594 to 1, which reflect the worst possible, and the best possible HRQoL, respectively. The EQ-5DTM score is determined by a person’s pain level, their mobility, their ability to care for themselves, their level of anxiety and depression and the extent to which they can perform everyday activities (e.g. work, studying, housework, family and leisure activities).

NHS OF Indicators 2/2.7 are published annually, with the following breakdowns; England, Gender, Age, Ethnicity, Sexual Orientation, Religion, Deprivation decile, lower tier local authority (LTLA), upper tier local authority (UTLA) and region. NHS OF Indicator 2 is also further broken down by number of long-term conditions and slope index of inequality. NHS OF Indicator 2 is the equivalent of CCG OIS Indicator 2.1.

The period of coverage for these indicators is defined as July of the specified year to March of the following year. The Indicators are published annually in the September following this Period of Coverage. From the 2017 publication onwards, period of coverage will change to January to March of the same year.

Technical description:

The weighted EQ-5DTM index value for individuals aged 18 and over reporting that they have one or more long-term health conditions, directly standardised by age and sex (NHS OF indicator

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2/IAP00325).

The weighted EQ-5DTM index value for individuals aged 18 and over reporting that they have three or more long-term health conditions, directly standardised by age and sex (NHS OF indicator 2.7/IAP00431).

The EQ-5DTM was developed by the EuroQol group as a tool to measure HRQoL1. This tool uses the answers from five different questions to calculate an index value of the individuals HRQoL. The five questions that the EQ-5DTM is based on cover the areas of; mobility, self-care, usual activities, pain/discomfort, and anxiety/depression. EQ-5DTM values can range from -0.594 to 1, which reflect the worst possible, and the best possible HRQoL, respectively.

The data source used in the construction of this indicator is the GPPS, which includes the EQ-5DTM.

EQ-5DTM is a registered trademark of EuroQol. EuroQol Group gave written permission to the Department of Health in May 2011 to use the EQ-5DTM questions only in this format (without the visual analogue scale) for the GP Patient Survey and are happy for it to be referred to as EQ-5D™.

NHS OF Indicators 2/2.7 are published annually, with the following breakdowns; England, Gender, Age, Ethnicity, Sexual Orientation, Religion, Deprivation decile, lower tier local authority (LTLA), upper tier local authority (UTLA) and region. NHS OF Indicator 2 is also further broken down by number of long-term conditions and slope index of inequality. NHS OF Indicator 2 is the equivalent of CCG OIS Indicator 2.1.

The period of coverage for these indicators is defined as July of the specified year to March of the following year. The Indicators are published annually in the September following this Period of Coverage. From the 2017 publication onwards, period of coverage will change to January to March of the same year.

Indicator owner & contact details

Department of Health

Andrew Parker

Principal Operational Research Analyst

Outcomes Analysis Team

Department of Health

[email protected]

Publication status Currently in publication

1 http://www.euroqol.org/

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Purpose The purpose of NHS OF Indicators 2/2.7 is to measure HRQoL in people suffering from long-term conditions. NHS OF Indicator 2 measures the HRQoL in people with one or more long-term conditions, while NHS OF Indicator 2.7 measures the HRQoL in people with three or more long-term conditions. The Indicator is not intended to be used to performance manage organisations.

NHS OF 2.7 focuses specifically on people with 3 or more long-term conditions as the NHS Outcomes Framework Technical Advisory Group and clinical advisors at NHS England originally identified this group of people as a priority. They deemed it important to track HRQoL in these people for a number of reasons. Firstly, people with three or more long-term conditions often have a much worse HRQoL than those with a single long-term condition2.

Secondly, the Department of Health projected2 that the number of people with 3 or more long-term conditions would increase from 1.9 million to 2.9 million between 2008 and 2018, and this figure is projected to carry on increasing after this period3.

Finally, as Figure 1 shows, the largest drop in HRQoL is found between those with 2 and those people with 3 long-term conditions.

These indicators will help to track HRQoL in these populations over time at both Local authority and regional/national levels and helps local authorities and NHS England in planning where services for people with long-term conditions require improvement.

Figure 1: EQ-5DTM score by number of long-term conditions. Recorded above each bar is the change between that bar and the previous bar. The biggest drop in HRQoL (-0.149) occurs between having two and three LTCs.

2 https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/216528/dh_134486.pdf 3 https://www.gov.uk/government/publications/2010-to-2015-government-policy-long-term-health-conditions/2010-to-2015-government-policy-long-term-health-conditions

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SponsorDepartment of HealthAndrew ParkerPrincipal Operational Research AnalystOutcomes Analysis TeamDepartment of Health

[email protected]

Endorsement NHS OF Indicators 2/2.7 were originally developed with input from the Outcomes Framework Technical Advisory Group (OFTAG). OFTAG were not consulted for the purpose of this methodology review. OFTAG includes academic and analytical experts in health, health economics and public health, and representatives from bodies such as National Institute for Health and Care Excellence (NICE) and RAND Europe.

Evidence and Policy base

Including related national incentives, critical business question, NICE quality standard and set or domain rationale, if appropriate

‘Enhancing quality of life for people with long-term conditions’ is one of the five key areas of the NHS Mandate, originally published in 20124.

Over 15 million people in England have a long-term condition (LTC). An LTC is defined as a condition that cannot be cured but can be controlled by medication and other therapies. People with LTCs are intensive users of health and social care services in England and account for; 50% of all GP appointments, 64% of all outpatient appointments, 70% of all inpatient bed days and around 70% of the total health and social care spend in England5.

The 2010 to 2015 government policy paper on long-term health conditions6 states that having an LTC ‘can affect many parts of a person’s life, from their ability to work and have relationships to housing and education opportunities’. The Department of Health’s document, ‘Long term conditions compendium of information’ goes on to say that having an LTC will usually lower an individual’s HRQoL, while having multiple LTCs further reduces HRQoL7.

Apart from asthma, the prevalence of LTCs generally increases with age5. The NICE Guideline8 and supporting Quality standard for “Older people with social care needs and multiple long-term conditions” both acknowledge the need to improve HRQoL in older people with multiple LTCs and challenges clinical staff to deliver person-centred care in order to achieve this. A separate NICE guideline, “Multimorbidity: clinical assessment and management”9, refers to individuals of all ages with two or more LTCs. It asks clinical staff to focus on how LTCs interact to influence HRQoL, and how

4 https://www.gov.uk/government/publications/the-nhs-mandate 5,5 https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/216528/dh_134486.pdf 6 https://www.gov.uk/government/publications/2010-to-2015-government-policy-long-term-health-conditions/2010-to-2015-government-policy-long-term-health-conditions7

8 https://www.nice.org.uk/guidance/ng22/resources/older-people-with-social-care-needs-and-multiple-longterm-conditions-1837328537797 9 https://www.nice.org.uk/guidance/ng56/resources/multimorbidity-clinical-assessment-and-management-1837516654789

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HRQoL can be improved by reducing treatment burden, adverse events and unplanned care.

NICE Quality Standards for individual LTCs including hypertension, chronic kidney disease and diabetes all mention HRQoL as an outcome that they aim to improve.

NHS OF Indicators 2/2.7 measure HRQoL using the EQ-5DTM. NICE have recommended the EQ-5DTM for use in the appraisal of new health technologies10. The EQ-5DTM uses five domains to question the user on their HRQoL. The five domains are; mobility, self-care, usual activities, pain/discomfort and anxiety/depression. It therefore takes into account the mental and physical well-being of the individual in terms of their HRQoL.

Data

Data source GP Patient Survey (GPPS)

Numerator NHS OF Indicator 2

Of the denominator, the sum of weighted EQ-5DTM index values.

NHS OF Indicator 2.7

Of the denominator, the sum of weighted EQ-5DTM index values.

Denominator NHS OF Indicator 2

The denominator is the sum of the weighted responses for all patients responding to the GPPS who indicated in questions 30 and 31 that they had one or more LTCs. The denominator excludes responses to the GPPS that do not include valid age, sex or EQ-5DTM index value fields.

NHS OF Indicator 2.7

The denominator is the sum of the weighted responses for all patients responding to the GPPS who indicated in questions 30 and 31 that they had three or more LTCs. The denominator excludes responses to the GPPS that do not include valid age, sex or EQ-5DTM index value fields.

Construction

Computation The indicator value is the directly standardised mean EQ-5DTM index value. The reference population used for direct standardisation is the sum of weighted responses for all respondents to the GPPS for that year.

The indicator value is computed as a directly standardised mean as detailed below and excludes responses to the GPPS that do not include a valid age, sex or EQ-5DTM index value.

10 https://www.nice.org.uk/process/pmg9/chapter/1-foreword#technology-assessment

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The Gender breakdown is directly standardised by age only. Conversely, the Age breakdown is directly standardised by Gender only – available on request.

Risk adjustment or standardisation type and methodology

Direct Standardisation

Variables and methodology:The indicator value is calculated as a directly standardised mean (DSM), weighted for non-response. The directly age/gender-standardised mean is the mean EQ-5DTM index value that would occur in the standard population age/sex structure if that population were to experience the age/gender-specific mean of the subject population. The standard population used is the total population of respondents to the GPPS for the corresponding year. Age bands are - 18 to 24, 25 to 34, 35 to 44, 45 to 54, 55 to 64, 65 to 74, 75 to 84, 85+. The DSM is computed as:

DSM=∑iwimi

∑iwi

Where

wi is the sum of all weighted respondents in the standard population, in age/gender group i

mi is the age/gender-specific mean in the subject population in age/gender group i, given by;

mi=∑ (EQ 5Di xWeight i)

∑(Weight i)

Where

EQ5Di is the EQ-5DTM index value for the ith respondent that self-reports as having a long-term condition* in the GPPS.

Weight iis the GPPS non-response weight for the ith respondent that self-reports as having a long-term condition* in the GPPS.

*For NHS OF 2 this is for all those respondents reporting ≥ 1 long-term conditions. For NHS OF 2.7 this is for all those respondents reporting ≥ 3 long-term conditions. Plese see section 3.11 for details.

Justification of risk adjustment type and variables

or why risk adjustment is not used

NHS OF Indicators 2/2.7 are standardised by age and sex to allow comparison within a breakdown over time, and to peer the National figure, where the age- and sex-distribution might be expected to vary, as EQ-5DTM scores are known to vary by age and sex.

While other variables exist in the data (e.g. deprivation), and could

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potentially be included in the standardisation process, the indicator is only adjusted for age and sex. This is to allow variation by these dimensions to be observed rather than obscured. For example, there is the potential to standardise the indicator by number and severity of LTCs. As the number co-morbidities a person has can itself be influenced by the quality of healthcare provision in the NHS, NHS England highlighted during the initial development of the indicator that it would not be appropriate to standardise and therefore obscure this variation.

The Gender breakdown presents Male- and Female-specific figures and these can therefore only be directly standardised by age. Conversely, the Age breakdown presents age band specific figures, which can only be directly standardised by Gender.

Confidence interval / control limit use and methodology

None

Justification of confidence intervals / control limits used

Confidence intervals are not calculated for NHS OF Indicators 2.2/7 as there is currently no agreed method for calculating confidence intervals for directly standardised mean EQ-5DTM index values. As such, confidence intervals are not calculated for any NHS OF or CCG OIS Indicators that calculate directly standardised mean EQ-5DTM index values (IAP00354, IAP00127, IAP0325, and IAP00431).

Presentation and Interpretation - presentation of indicator

The indicator value is presented as a mean weighted EQ-5DTM index value that is directly standardised by age and sex. The indicator value is presented at the following breakdowns; England, Gender, Age, Ethnicity, Sexual Orientation, Religion, Deprivation decile, lower tier local authority (LTLA), upper tier local authority (UTLA) and region. NHS OF Indicator 2 is also further broken down by number of LTCs and the slope index of inequality is presented alongside National figures. This is published on NHS Digital’s Indicator Portal as Microsoft Excel and CSV files. The files are structured as follows:

Column Name Output

Year Respective year

Period of coverage Specific months of the survey fieldwork

Breakdown England, gender, age, ethnicity, sexual orientation, religion, deprivation decile, lower tier local authority, upper tier local authority, region, number of LTCs (NHS OF Indicator 2 only)

Level Level of breakdown

Level description Description of level of breakdown

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Indicator value Mean weighted EQ-5DTM index value (directly standardised by age and sex) for individuals who report that they have;

≥ 1 LTCs (NHS OF Indicator 2)

≥ 3 LTCs (NHS OF Indicator 2.7)

Denominator Sum of weighted response

Numerator Sum of weighted EQ-5DTM index values

Average health status for all respondents

The mean weighted EQ-5DTM index value (directly standardised by age and sex) for all individuals who completed the GPPS for that year

Survey response rate The survey response rate for all persons, presented as a percentage.

Percentage of respondents reporting a problem

Directly age and sex-standardised weighted percentage of respondents that reported having ≥ 1 LTCs (NHS OF Indicator 2)/ ≥ 3 LTCs (NHS OF Indicator 2.7) and having problems in the each of the EQ-5DTM domains. One figure is presented for each of the five domains.

SII Slope Index of Inequality (NHS OF 2 only, restricted to the national figure)

CI Lower - SII 95% lower confidence interval of SII

CI Upper - SII 95% upper confidence interval of SII

RII Relative Index of Inequality (NHS OF 2 only, restricted to the national figure)

CI Lower - RII 95% lower confidence interval of RII

CI Upper - RII 95% upper confidence interval of RII

Presentation (continued)

Contextual information provided alongside indicator

with justification

The ‘Average health status for all respondents’ column is a contextual column that provides information for interpreting the indicator value. This column shows the mean weighted age- and sex-standardised EQ-5DTM index value for all GPPS respondents, at each breakdown level. This column allows the indicator value to be easily compared to the whole population, i.e. the HRQoL of those with LTCs (indicator value) compared to the population mean HRQoL (contextual column) for that particular breakdown. The aim of this is to highlight the potential health-inequality for those with LTCs.

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NHS OF Indicators 2/2.7 also include the survey response rate for the National, Region, UTLA and LTLA breakdowns. The survey response rate is measured as the unweighted number of total surveys returned as a percentage of the number of surveys sent. Survey response rates cannot be calculated for breakdowns by Ethnicity, Sexual orientation, Religion, Deprivation and number of LTCs, as the number of surveys sent out cannot be determined at these levels.

NHS OF Indicator 2 also includes the Slope Index of inequality, presented alongside the National breakdown of the indicator value. Slope index of inequality was planned to be included in 11 Indicators from the NHS OF set of indicators, including NHS OF 2. This was set out by the Department of Health in 201511, in order to assess how NHS England is meeting its legal duty of reducing health inequalities. The methodology for the calculation of the Slope index of inequality was subsequently reviewed and approved for use with caveats by MRG/IGB in February 2016 (IAP00432).

The slope index of inequality is a measure of the social gradient in HRQoL, i.e. how much this varies with deprivation. It takes account of health inequalities across the range of deprivation deciles and summarises this in a single number. This represents the range in HRQoL across the social gradient from most to least deprived, based on a statistical analysis of the relationship between HRQoL and deprivation across all deprivation deciles.

Further contextual information – % of respondents reporting a ‘problem’

As part of the initial assurance of CCG OIS indicator 2.16, it was suggested by the Indicator Governance Board that evidence was presented as part of the review of the indicator for investigating the effect of having the EQ-5DTM anxiety/depression dimension included in the construction of the indicator value. To bring all HRQoL indicators in the CCG OIS and NHS OF in line with each other, we also propose this change to NHS OF Indicators 2/2.7.

This has been investigated by calculating the percentage of respondents reporting a ‘problem’ in each of the 5 domains of EQ-5DTM ; this is a figure showing the weighted percentage (directly standardised by age and sex) of respondents for each domain who responded as suffering from ‘slight’ (Level 2) to ‘extreme’ problems (Level 5) for that particular domain (see figure 1). Essentially, this is;

( Number of respondentsreporting levels2−5∈domainXNumber of respondentsreporting levels1−5∈domainX

) x 100

The EuroQol group document this method of describing the proportion of people who respond as having ‘problems’ in an EQ-5DTM domain in their user guide12. We propose to present this

11 https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/417897/Indicators_acc.pdf 12 http://www.euroqol.org/fileadmin/user_upload/Documenten/PDF/Folders_Flyers/EQ-5D-

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percentage figure for each of the five EQ-5DTM domains in the final indicator output, at all breakdowns. Including this as contextual information allows the user to see which domains are driving the overall indicator values for that particular breakdown. Figures 3 and 4 show the variation present in this contextual data at the LTLA level, for NHS OF Indicators 2 and 2.7, respectively. Please note that suppressed values have not been presented in these figures. The 2015-16 data for the LTLA breakdown of NHS OF Indicator 2.7 contains 143 suppressed values whereas the LTLA breakdown for NHS OF Indicator 2 contains only one suppressed value. This accounts for the lower overall number of LTLAs in Figure 4.

See figures 3 and 4 at end of this table.

Figure 3: Frequency polygon showing the weighted percentage of respondents per LTLA that reported having ‘problems’ in a particular domain of the EQ-5DTM. GPPS 2015-16. Data are age- and sex-standardised. Filtered to those respondents reporting one or more LTCs.NHS OF 2 – respondents with one or more LTCS

0 10 20 30 40 50 60 70 80 90 1000

50

100

150

200

250

Mobility

Self-care

Usual activities

Pain/Discomfort

Anxiety/Depression

Percentage of respondents reporting 'problems' in a domain of the EQ-5DTM

No.

of L

TLAs

EQ-5DTM domain

5L_UserGuide_2015.pdf

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Figure 4: Frequency polygon showing the weighted percentage of respondents per LTLA that reported having ‘problems’ in a particular domain of the EQ-5DTM. GPPS 2015-16. Data are age- and sex-standardised. Filtered to those respondents reporting three or more LTCs.

NHS OF 2.7 – respondents with three or more LTCs

0 10 20 30 40 50 60 70 80 90 1000

10

20

30

40

50

60

70

80

Mobility

Self-care

Usual activities

Pain/Discomfort

Anxiety/Depression

Percentage of respondents reporting 'problems' in a domain of the EQ-5DTM

No.

of L

TLAs

EQ-5DTM do-main

Presentation (continued)

Calculation and data source of contextual information

The ‘Average health status for all respondents’ contextual column is derived from the GPPS and is calculated in the same fashion as the indicator value, (as detailed in sections 3.9, 3.10 and 4.4), as a weighted mean, directly standardised by age and sex. The only difference is that this column is not filtered by questions 30 or 31 and therefore includes all respondents to the GPPS who have a valid age, sex and EQ-5DTM.

The survey response rate is calculated separately for the National, Gender, Age, Sex, Region, LTLA and UTLA breakdowns. This is a percentage, calculated as the count of all respondents for that breakdown divided by the count of surveys sent out to people in that breakdown. This figure is then multiplied by 100. Please note that the survey response rate does not take LTCs into account and therefore the survey response rates for similar breakdowns between NHS OF 2 and 2.7 will be the same.The Slope index of inequality is calculated as detailed in the documentation for the indicator Health Inequality (area deprivation) – Health related quality of life for people with long-term conditions (IAP00432).The contextual columns presenting the percentage of respondents with problems in each of the EQ-5DTM domains are calculated as

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directly age- and sex-standardised percentages (DSP), weighted for non-response. The DSP is the percentage of respondents reporting a problem in the EQ-5DTM that would occur in the standard population age/sex structure if that population were to experience the age/gender-specific percentage of the subject population. The standard population used is the total population of respondents to the GPPS for the corresponding year. Age bands are - 18 to 24, 25 to 34, 35 to 44, 45 to 54, 55 to 64, 65 to 74, 75 to 84, 85+. The DSP is computed as:

DSP=∑iw i pi

∑iw i

X 100

Where

wi is the sum of all weighted respondents in the standard population, in age/gender group i

pi is the age/gender-specific proportion of respondents with problems in an EQ-5DTM domain in the subject population in age/gender group i, given by;

pi=n id i

Where

ni is the sum of weighted respondents, in age/gender group i, for all respondents who identify themselves as having a long-term condition* and respond as being between levels 2 and 5 for that particular EQ-5DTM domain.

di is the sum of weighted respondents, in age/gender group i for all respondents who identify themselves as having a long-term condition* and respond as being between levels 1 and 5 for that particular EQ-5DTM domain.

* For NHS OF 2 this is for all those respondents reporting ≥ 1 long-term conditions. For NHS OF 2.7 this is for all those respondents reporting ≥ 3 long-term conditions. Plese see section 3.11 for details.

Use of bandings, benchmarks or targets

with justification

This indicator is presented without a target or ranking. If a user believes their figure to be disproportionately low when compared to other groups within the same breakdown, the national figure or the contextual figure, the factors contributing to this can be investigated and appropriate action can be taken. The Indicator is not intended to be used to performance manage organisations.

The weighting scheme used to convert EQ-5DTM health states into index values means that it is theoretically possible to have a negative

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EQ-5DTM index value. While this may be seen with record level data, the indicator uses averaged data, so in practice, negative values are not encountered in the indicator data.

Banding, benchmark or target methodology

N/A

Interpretation

Interpretation guidelines

The indicator value can range from -0.594 to 1, from the worst possible HRQoL to the best possible HRQoL, respectively. An indicator value as close to 1 as possible is desirable. This indicates a high HRQoL. Multiple comparisons of the indicator value can be made as the value is directly standardised by age and sex. For example, levels can be compared to each other within a breakdown, or a breakdown can be compared to the national figure. Levels within breakdowns can also be compared over time.

Another way to interpret the indicator is to look at the gap between the indicator value for a breakdown/level and the ‘Average health status for all respondents’ contextual column, and how this changes over time, i.e. the gap in HRQoL between the population of people suffering LTCs and the HRQoL in the general population.

Any changes in HRQoL over time should be considered alongside changes in survey response rate. Comparisons between breakdowns/levels and the national figures can be made while taking into account the contextual information provided in the columns that describe the percentage of respondents with problems for each EQ-5DTM domain. This will allow users to see which domains might be driving EQ-5DTM index values lower and allow services to target improving care in these domains.

It is important to understand that due to the weights applied to convert the EQ-5DTM health status to an index value, the relationship between EQ-5DTM index value and HRQoL is not linear. It is therefore impossible to say that an increase of 0.1, from 0.5 to 0.6, is the same change in HRQoL as the change between 0.6 and 0.7. Rather, it should be interpreted as a relative increase in HRQoL for that population.

The scientific literature has begun to publish guidance on the use of ‘minimally important differences’ (MID) in the use of EQ-5DTM index values to measure clinical changes in HRQoL. A MID is defined as the threshold value that has a meaningful clinical difference to the respondent. Studies suggest that this threshold has to be set for each disease group but published data include EQ-5DTM MIDs between 0.07 and 0.1213,14.

Due to the fact that there is no agreed method to calculate confidence intervals for directly standardised EQ-5DTM means, MIDs provide a potential alternative method for CCGs to quantify

13 https://www.ncbi.nlm.nih.gov/pubmed/1611093214 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2248572/

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meaningful clinical change in their indicator value over time.

In relation to this change Ipsos MORI have advised caution when comparing LTCs over time15. Table 5 provides figures for the numbers of people responding to the 2014-15 GPPS in terms of respondents with learning difficulties and ≥ 1 LTCs (these data were collected before the change to question 31 was made). As table 5 shows, the percentage of respondents that reported having learning difficulties and no concomitant LTCs is relatively low (0.33%) in the context of all respondents with LTCs. Further analysis shows that 73.56% of all those respondents reporting a learning difficulty had one or more concomitant LTCs. Table 6 shows the same analysis but restricted to those respondents with ≥ 3 LTCs (NHS OF Indicator 2.7). Here, 44.15% of all respondents with learning difficulties have ≥ 3 concomitant LTCs.

In conclusion, due to the small overall size of this patient group, and the fact that a large majority have concomitant LTCs, it can be expected that the change in the design of 15 http://gp-survey-production.s3.amazonaws.com/archive/2016/July/GP+Patient+Survey+Change+Log+July+2016+(1).xlsx

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NHS OF Indicators 2 and 2.7 uses questions 30 and 31 of the GPPS (Figure 2) to filter respondents based on whether or not they have a LTC. The list of LTCs contained within question 31 is not exhaustive of all documented LTCs but question 31 does give the respondent the option to select “another long-term condition” if their particular condition is not listed.

A limitation of using the GPPS in conjunction with the EQ-5DTM tool is that the inclusion criteria rely on the respondent self-reporting that they have a LTC rather than an official diagnosis. This reliance on self-reporting could cause bias. For example, if an individual is self-reporting a condition that has not been formally diagnosed, the indicator value would be affected by respondents that the NHS was not necessarily aware they should be treating. It is also possible to envisage the opposite scenario causing bias.

The indicators rely on self-reporting rather than a diagnosis and therefore may not be comparable with indicators based on the diagnoses of LTCs by health care professionals. Furthermore, the list of LTCs included in the GPPS is not the same as the list of clinically recognised LTCs published by the Office for National Statistics. It is also be possible that the number and/or severity of LTCs could influence response rates. Ipsos MORI have not yet explored whether those people with more LTCs (or more severe LTCs) are less likely to respond to the GPPS. These caveats are included in the accompanying Quality Statement for indicators IAP00325 and IAP00431.

Changes to Question 31

From the 2015 July – September GPPS questionnaire and onwards, question 31 was re-designed to remove ‘learning difficulty’ from the list of conditions. This change was adopted by Ipsos MORI through consultation with the GPPS steering group which includes members of NHS England and the Care Quality Commission. The question was removed as a learning difficulty is not generally considered to be a LTC and other sources tend to deal with disabilities in separate sections. A new question (Question 58 – ‘Do you have a learning disability?’) was therefore added to the GPPS to capture this data elsewhere.

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question 31 should not appreciably affect indicator values for NHS OF Indicator 2. This change will have a greater effect on Indicator 2.7.

Table 5: Comparison of mean weighted, age- and sex-standardised EQ-5DTM index values between respondents with ≥ 1 LTCs and learning difficulties. GPPS 2014-15.

All who responded as

having ≥ 1 LTCs and/or

learning difficulties

All who responded as

having ≥ 1 LTCs and learning

difficulties

All who responded as having learning difficulties only (no

LTCs were selected by

respondent)

Count 477,737 5,884 1,556

% of all respondents

who responded as having LTCs

and/or learning difficulties

100 1.23 0.33

Mean weighted EQ-5DTM index

value

0.743 0.492 0.724

Table 6: Comparison of mean weighted, age- and sex-standardised EQ-5DTM index values between respondents with ≥ 3 LTCs and learning difficulties. GPPS 2014-15.

All who responded as

having ≥ 3 LTCs and/or

learning difficulties

All who responded as

having ≥ 3 LTCs and learning

difficulties

All who responded as having learning difficulties only (no

LTCs were selected by

respondent)

Count 101,505 2,786 1,556

% of all respondents

who responded as having LTCs

and/or learning

100 2.74 1.53

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difficulties

Mean weighted EQ-5DTM index

value

0.470 0.406 0.724

Changes to GPPS fieldwork waves

With the recent change in the frequency of GPPS fieldwork from two waves per year to one (see section 3.3), it could be argued that seasonal effects will now have a greater impact on GPPS data. Previously, GPPS data were collected over two waves (one in the summer and one in the winter) and aggregated to an annual figure. From July 2016 onwards, a single period of fieldwork in the winter will be used to collect GPPS data. This could potentially influence EQ-5DTM results as HRQoL is known to be affected by season16.

It is clear from Table 7 that while GPPS EQ-5DTM data show a small seasonal trend, Indicator values are not significantly changed by season. Contextual data should not be affected at all (0.821 vs 0.821 for each wave). NHS OF Indicator 2/2.7 both have slightly lower Indicator values in the Winter waves, compared to the Summer wave, consistent with results published by Jia and Lubetkin (2009)23.

Table 7: Comparison of mean weighted, age- and sex-standardised EQ-5DTM index values between the two waves of GPPS 2015-16.

All respondents to GPPS

Respondents with ≥ 1 LTCs

(NHS OF Indicator 2)

Respondents with ≥ 3 LTCs

(NHS OF Indicator 2.7)

Wave 1 (July-

September 2015) mean

weighted EQ-5DTM

Index value

0.821 0.742 0.465

Wave 2 (January-

March 2016) mean

weighted EQ-5DTM

Index value

0.821 0.740 0.461

16 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2728661/

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Improvement actions The NHS Outcomes Framework sets out the national outcome goals that the Secretary of State for Health will use to monitor the progress of NHS England and there is an expectation of continuous improvement. It does not set out how these outcomes should be delivered; it will be for NHS England to determine how best to deliver improvements by working with Clinical Commissioning Groups and Providers to make use of the tools at their disposal.

NHS OF Indicators 2/2.7 give an indication of the HRQoL in the population of people self-reporting ≥ 1 and ≥ 3 LTCs, respectively. As for what should be considered a ‘bad’ position, this could be described as; (1) a drop in the indicator value for a breakdown over time, (2) a low indicator value for a breakdown when compared to the national figure, or (3) a large inequality between the indicator value for a breakdown and the ‘Average health status for all respondents’ contextual data for that breakdown (i.e. a large inequality between HRQoL for people ≥ 1/≥ 3 LTCs and the wider population).

To improve upon a ‘bad’ position it is up to NHS England to commission improved services for people with LTCs in primary care, taking into account the NICE Quality Standards and Guidelines referenced in section 2.4. NHS England can also work with CCGs improve on the provision of secondary care for people with LTCs, as even though NHS OF Indicators 2/2.7 use the GPPS as their data source, the EQ-5DTM questioning refers to the individuals health in general, and does not specify from where (i.e. primary or secondary care) this is being influenced.

Quality of life is influenced by many factors, not all of them necessarily amenable to change via healthcare provision. However, the EQ-5DTM used in NHS OF Indicators 2/2.7 is dependent on a variety of factors including mobility, self-care, usual activities, pain/discomfort and anxiety/depression. Each domain can therefore be individually targeted in both primary and secondary care. NHS England/CCGs can refer to the ‘percentage of respondents reporting a problem’ column to see which domains they need to target.

In terms of self-care, the provider can work with adult social care organisations to promote independence and re-enablement where patients have been admitted to secondary care. Providers can work with NHS England to promote awareness of pain management in the population of people suffering from LTCs.

Evidence of variability

NHS OF 2

Figure 5 shows the variability in the EQ-5DTM index value per LTLA for NHS OF Indicator 2 (2015-16 data), with a minimum, maximum, mean and standard deviation of 0.661, 0.830, 0.747 and 0.033 respectively. At the National level for 2015-16, NHS OF Indicator 2 has an indicator value, numerator and denominator of 0.741, 289,089.6 and 395,486.7, respectively.

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Tables 8 and 9 show the top ten and bottom ten LTLAs for indicator values, respectively, for NHS OF Indicator 2 (2015-16 data).

Figure 5: NHS OF Indicator 2 by LTLA, from lowest scoring LTLA to highest. GPPS 2015-16. Indicator value is the age- and sex-standardised mean weighted EQ-5DTM index value.

0.0

0.1

0.2

0.3

0.4

0.5

0.6

0.7

0.8

0.9

LTLAs

Indi

cato

r Val

ue

Table 8: Top ten LTLAs for indicator NHS OF 2. 2015-16 GPPSLTLA Indicator

ValueNumerator Denominator Average Health status for

all respondents 1 0.83 544.6 686 0.8742 0.818 325.8 422.8 0.8573 0.816 480.8 606.2 0.8684 0.815 890.6 1,103.9 0.8665 0.808 933.2 1196 0.8566 0.802 683.9 879.2 0.8517 0.801 526.7 669.6 0.868 0.801 755.9 962.1 0.8589 0.8 682 865.6 0.871

10 0.8 943.6 1,194.6 0.858

Table 9: Bottom ten LTLAs for indicator NHS OF 2. 2015-16 GPPS.LTLA Indicator

ValueNumerator Denominator Average

Health status for all respondents

316 0.68 399.1 602.5 0.772317 0.679 1,221.1 1,829.4 0.779318 0.678 1,499.2 2,246.3 0.777319 0.677 495.4 754.3 0.772320 0.676 678.7 1,012.5 0.789321 0.674 822.9 1,246.1 0.765322 0.674 2,287.7 3,461.7 0.768323 0.671 678.6 1,019.5 0.771

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324 0.669 778.7 1,186.3 0.765325 0.661 359.5 545.6 0.774

NHS OF 2.7

Figure 6 shows the variability in the EQ-5DTM index value per LTLA for NHS OF Indicator 2.7, with a minimum, maximum, mean and standard deviation of 0.267, 0.615, 0.438 and 0.062 respectively. At the National level for 2015-16, NHS OF Indicator 2.7 has an indicator value, numerator and denominator of 0.463, 34,138.5 and 67,572.8, respectively.

Please note that the 2015-16 Indicator data for the LTLA breakdown of NHS OF 2.7 has 143 suppressed values whereas the same breakdown for NHS OF Indicator 2 contains only one suppressed value. This accounts for the difference in numbers of LTLAs presented between Figures 5 and 6.

Tables 10 and 11 show the top ten and bottom ten LTLAs for indicator values, respectively, for NHS OF Indicator 2.7.

Figure 6: NHS OF Indicator 2.7 by LTLA, from lowest scoring LTLA to highest. GPPS 2015-16. Indicator value is the age- and sex-standardised mean weighted EQ-5DTM index value

0.0

0.1

0.2

0.3

0.4

0.5

0.6

0.7

LTLAs

Indi

cato

r Val

ue

Table 10: Top ten LTLAs for indicator NHS OF 2.7. 2015-16 GPPS.

LTLA Indicator Value

Numerator Denominator Average Health Status for all respondents

1 0.615 70.6 108 0.8742 0.59 138.3 241.3 0.8273 0.578 106.5 177.9 0.8454 0.575 110.2 179.2 0.8395 0.559 85.4 156.2 0.83

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6 0.559 63.3 111.2 0.8167 0.549 65 103.2 0.8558 0.547 116.1 200.3 0.8459 0.546 128.8 243.7 0.838

10 0.542 124.6 265.6 0.823

Table 11: Bottom ten LTLAs for indicator NHS OF 2.7. 2015-16 GPPS.LTLA Indicator

ValueNumerator Denominator Average

Health Status for all respondents

174 0.344 116.4 227.1 0.82175 0.343 175.7 419.8 0.787176 0.342 53.5 124.5 0.774177 0.34 121.3 284.4 0.765178 0.328 89 245.6 0.781179 0.317 102.4 267.4 0.765180 0.314 176.2 420.8 0.779181 0.307 62.2 124.8 0.831182 0.297 137 282.2 0.806183 0.267 58 120.3 0.807

Variation analysis; respondent volume versus indicator data

Analysis was performed to ensure that the variation in indicator value was not simply due to the volume of respondents. The analysis was included here due to an MRG recommendation from the initial assurance of this indicator. As Figure 7 shows, there is a weak negative correlation between the volume of respondents per LTLA and the mean weighted EQ-5DTM index value for NHS OF Indicator 2 (Pearson’s correlation coefficient, -0.373).

When the same scatter plot is repeated (Figure 8) with the weighted sum of respondents rather than a count of respondents (i.e. taking the non-response weighting into account), the correlation is weaker still (Pearson’s correlation coefficient, -0.297).

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Figure 7: Volume of respondents per LTLA vs. NHS OF 2 Indicator value. GPPS 2015-16. Data are age and sex-standardised. Pearson’s correlation coefficient, -0.373

0.6 0.65 0.7 0.75 0.8 0.850

1000

2000

3000

4000

5000

6000

7000

8000

9000

10000

Mean weighted EQ-5D-5L value index

No.

of r

espo

nden

ts p

er LT

LA

Figure 8: Weighted sum of respondents per LTLA vs. NHS OF 2 Indicator value. GPPS 2015-16. Data are age and sex-standardised. Pearson’s correlation coefficient, -0.297.

0.6 0.65 0.7 0.75 0.8 0.850

1000

2000

3000

4000

5000

6000

7000

8000

Mean weighted EQ-5D-5L value index

Wei

ghte

d su

m o

f res

pode

nts

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Risks

Similar existing indicators

In terms of other indicators that use the EQ-5DTM tool from the GPPS as a measure of HRQoL, CCG OIS indicators 2.1 and 2.16 both fit this description (IAP00127 and IAP00354, respectively).

CCG OIS Indicator 2.1 is the CCG OIS equivalent of NHS OF Indicator 2. CCG OIS Indicator 2.16 is a sub-set of CCG OIS Indicator 2.1. It uses the same indicator statistic and data source, but further restricts the analysis to only those respondents who selected that they have a long-term mental health condition according to question 31 of the GPPS.

Coherence and comparability

NHS OF Indicators 2/2.7 have good comparability and coherence with both of the similar existing indicators mentioned in section 6.1, as they are all based in on the GPPS and share many similarities in methodology, construction and presentation.

Methods of standardisation differ slightly between these indicators. This set of indicators are standardised by age and sex, using the total GPPS response as the reference population. CCG OIS indicator 2.1 and NHS OF Indicators 2/2.7 are directly standardised by age and sex using eight age bands. Conversely, CCG OIS indicator 2.16 uses direct standardisation by age and sex using four age bandings with larger band intervals.

The decision to use fewer age bands in CCG OIS indicator 2.16 was implemented in the initial assurance of the indicator. The reason for this is due to the fact that the number of respondents to the GPPS per CCG is much larger for people suffering from LTCs, compared to those suffering from long-term mental health conditions. Consequently, standardisation by eight bands introduces extensive suppression in CCG OIS 2.16 but not CCG OIS 2.1 or NHS OF 2/2.7.

NHS OF indicator 2 and CCG OIS 2.1 will have slightly different figures for similar years within similar breakdowns. This is due to the fact that NHS OF Indicator 2 is based on a resident population and removes those records that are resident in Wales. CCG OIS 2.1 is based on a registered population.

While CCG OIS is broken down by CCG only NHS OF 2 provides the following breakdowns; gender, age, ethnicity, sexual orientation, religion, deprivation decile, lower tier local authority, upper tier local authority, region and number of long-term conditions NHS OF Indicator 2 also presents slope index of inequality for the national figure.

Changes to the GPPS and EQ-5D TM over time

Initially, HRQoL was measured in the GPPS via the EQ-5D-3L tool. In July 2012 the GPPS changed to using the EQ-5D-5L; by using five levels to choose from the EQ-5D-5L reduces ceiling effects and is

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able to resolve smaller changes in HRQoL17.

NHS OF Indicators 2/2.7 used the EQ-5D-3L for their initial data period (July 2011 to March 2012) but used the EQ-5D-5L for all following data periods. EuroQol group provide a ‘crosswalk’18 function that maps the relationship between EQ-5D-3L and EQ-5D-5L. EQ-5DTM index values for NHS OF Indicators 2/2.7 are calculated using this crosswalk function, at the stage of conversion from a health status to an index value.

A redesign of the GPPS questionnaire postal strategy in 2016 means that unweighted data should not be compared over time, but it is still valid to compare weighted data. NHS OF Indicators 2/2.7 are based on weighted data so this should not affect data quality and comparability.

Undesired behaviours and/or gaming

As the data source for NHS OF Indicators 2/2.7 is the GPPS, there is very little scope for local authorities to influence the indicator value in terms of gaming. The survey is run by the independent organisation Ipsos MORI and questionnaires are sent out to a random selection of people registered with GP. Therefore, each local authority has little power over incentivizing respondents to answer the GPPS in a certain way. As mentioned in section 5.7 there is a caveat to the indicator in that it relies on a self-reported condition rather than a formal diagnosis. This could be considered an undesired behaviour on the part of the respondent.

Approach to indicator review

The NHS Digital Clinical Indicators team will work with the data supplier to keep abreast of updates to and issues with the data source. Any updates or issues that are highlighted will be reported to the user. User feedback and comments on this indicator are welcomed via NHS Digital Enquires ([email protected]) or the Clinical Indicators mailbox. The NHS Digital Clinical Indicators team will respond to feedback from users of the indicator and any comments obtained will be acted on if necessary and incorporated into the review cycle of the indicator.

Disclosure control Indicator values are suppressed where there are more than two ‘zero’ cells for age and sex combinations within a CCG. A ‘zero’ cell is an instance where there is a denominator count of 0 in a particular age and sex combination.

Furthermore, where the numerator for a breakdown category is less than 25, the indicator value is also suppressed.

Finally, if there are less than ten respondents for any one breakdown, then the numerator, denominator and indicator value are all suppressed for that breakdown.

The ‘percentage of respondents reporting a problem’ contextual column is also suppressed in all of the three above cases.

17 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3220807/18 http://www.euroqol.org/fileadmin/user_upload/Documenten/PDF/Crosswalk_5L/EQ-5D-5L_Crosswalk_model_and__methodology.pdf

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EQ-5DTM index values are rounded to three decimal places while numerators and denominators are rounded to one decimal place.

Percentages are rounded to one decimal place before publication.

The Statistics Code of Practice is followed regarding security and release of information prior to publication.

Copyright Copyright © 2016, Health and Social Care Information Centre. NHS Digital is the trading name of the Health and Social Care Information Centre.

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Final Assurance Rating from the Indicator Governance Board - Click here to enter date

Reason for assessment

Iteration

Ratings Against Assessment

Criteria

Overall Rating

Clarity

Rationale

Data

Construction

Presentation and Interpretation

Risks and Usefulness

Outcome Choose an item.

Key findings from Assurance

Key finding 1 Key finding 2 Key finding 3

Approval date Click here to enter a date.

Review date Click here to enter a date.

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Details of Methodology Appraisal – 12/01/2017

Methodology appraisal body Indicator & Methodology Assurance Service

Reason for assessment Scheduled review (review date reached)

Iteration 1st MRG meeting

Suggested Assurance Rating by Methodology Appraisal Body

Ratings Against Assessment Criteria -

Overall Rating

Clarity -Not enough information

provided

Rationale -Data -Construction -Presentation and Interpretation -Risks and Usefulness -

Summary Recommendation to the applicant and IGB:

MRG are of the opinion that in the indicator’s current state, it is only suitable for use by expert users who understand the methodology. MRG would not discourage the indicator from being published, however do not believe it is of sufficient robustness to be held within the Library of Quality Assured Indicators.Given the methodology is robust, which MRG cannot currently assess due to uncertainty of the weighting methodology, a significant amount of development work would be required to produce meaningful confidence intervals, which would be needed in order for MRG to reconsider this application for inclusion in the Library. Please find a detailed description of recommendations and actions in the appraisal log at the end of the document.

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What do the Assurance Ratings mean?

Rating Description

Fit for use This indicator can be used with confidence that it is constructed in a sound manner that is fit for purpose.

Fit for use with caveats

The indicator is fit for use; however users should be aware of caveats and/or recommendations for improvement that have been identified during the assurance process.

Use with caution – data quality issue

The indicator is based on a sound methodology for which the assurance process endorse the use, however issues have been identified with the national data source which have implications for its use as an indicator.

Not fit for useIssues have been identified with the indicator which have resulted in the assurance process currently not endorsing its use as a quality indicator.

Not enough information provided

There has not been enough information supplied to the assurance process to be able to accurately give the indicator a level of assurance.

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Appraisal Log

Clarity

Rec. no

Issue or recommendation

Raised by / Date

Response or Action taken by applicant

Response date

Resolved

Sign off by / Date

1a The plain English definition currently is a background to the indicator and does not explain what type of indicator it is.

MRG – 12/01/2017

The applicants have updated the plain English definition in section 1.4 to better reflect the type of indicator value used, i.e. a directly standardised mean EQ-5D score. The applicants also include period of coverage, publication frequency and detail the breakdowns of each indicator.

1b It is advised that the definition (and interpretation) states that a higher value is better and a score of 1 is ideal (i.e. the patient has a perfect quality of life as defined by them).

MRG – 12/01/2017

The applicants have updated the definition in section 1.4 to include information about the range of EQ-5D values and what these mean.

Rationale

Rec. no

Issue or recommendation

Raised by / Date

Response or Action taken by applicant

Response date

Resolved

Sign off by / Date

2a Please could a rationale be provided for

MRG – 12/01/2017

The applicants have provided references and data produced by Department of Health and NHS England that describe the reasons

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measuring the health related quality of life for people with three or more long term conditions specifically.

for focusing specifically on 3 or more long-term conditions. This information is included in section 2.1

2b In the Endorsement section, the full name of NICE will need to be updated to read “National Institute for Health and Care Excellence”. MRG also brought to attention that this indicator will have been through additional NICE indicator processes and the NICE representative offered to supply this information to the applicant.

MRG – 12/01/2017

The applicants have updated the full name for NICE in section 2.3 and added NICE CCG OIS Advisory Committee as an endorsement for the CCG OIS Indicators.

2c MRG request that the applicants reconsider the purpose of the indicator to ensure it is

MRG12/01/2017

The applicants have changed the purpose (section 2.1) so that it is realistic.

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realistic. For example, the indicator cannot improve health related quality of life directly.

2d MRG request that information is supplied explaining how the indicator is currently used, whether it has been used to drive improvements and a summary of feedback received. This will be useful to determine for example whether a breakdown by long-term condition would be advisable, or whether users are content with presenting the indicator for all long term conditions together.

MRG12/01/2017

The indicators selected for inclusion in the CCG OIS and NHS OF are reviewed each year by NHS England and the Department of Health respectively. Any changes to the scope of the indicator sets are determined by these customers, who may consult with the public as necessary.The NHS OF is used by the Secretary of State for Health to hold NHS England to account for progress in the NHS in England as described in the NHS mandate (https://www.gov.uk/government/publications/nhs-mandate-2016-to-2017). During 2016 a measure of health inequality (the slope index of inequality) was implemented on NHS OF indicator 2, reflecting its current use and the desire to further develop the indicator by introducing this summary measure.The CCG improvement and assessment framework, introduced in 2016, includes CCG OIS 2.1 - https://www.england.nhs.uk/commissioning/ccg-assess/iaf/, demonstrating the usage of the CCG level version of this indicator.”

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Data

Rec. no

Issue or recommendation

Raised by / Date

Response or Action taken by applicant

Response date

Resolved

Sign off by / Date

3a As with other indicators based on the GPPS, the quality statement will need to include an explanation of the potential impact of non-response, and details of comparison undertaken in identifying levels of coverage.

MRG – September 2013

Information has been added to 3.4 around Ipsos MORI establishing a weighting strategy to take into account non-response bias. This information is also included in the Indicator Quality Statement. Response rates are presented as contextual data for NHS OF Indicators 2 and 2.7 and this contextual data is planned to be included in future publications of CCG OIS Indicators 2.1 and 2.16.

19/12/16 ☐

3b Please could the applicant reference the Health Survey for England in section 3.2 other data sources considered and justify why this was not used.

MRG – 12/01/2017

In section 3.2, the Health Survey for England has been included as data source that was not suitable for the indicator due to low number of records and lack of a measure of HRQoL such as EQ-5D.

3c MRG recommend including a regular validation of the prevalence of LTCs as identified in the survey, compared with other sources. Please could the applicants supply any information they currently have for MRG to consider.

MRG – 12/01/2017

Applicants have compared prevalence of each LTC listed in the 2015-16 GPPS against prevalence for closest listed condition in the Quality Outcomes Framework disease register, noting that not all LTCs have directly comparable prevalence, due to differences in definitions. This is included as an embedded file in section 3.2.

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Construction

Rec. no

Issue or recommendation

Raised by / Date

Response or Action taken by applicant

Response date

Resolved

Sign off by / Date

4a The indicators are recommended for discussion by IGB on the understanding that the indicators will be weighted using age and gender, but that supporting contextual data will be required highlighting the proportion of people with long term conditions.

MRG – September 2013

A table in 3.4 has been included to show the proportion of individuals with 1 or more long-term conditions or a long-term mental health condition (as appropriate).

19/12/16 ☐

4b The denominator and numerator should describe “from people who identify themselves as having a long term condition” (as opposed to “identified as having a long term condition”). Similarly, the title of the indicator should include “self- perceived long term conditions” to capture that the indicator is self-reported rather than a clinical assessment.

MRG –September 2013

The numerator and denominator reflect the ‘patients responding to the GPPS who indicated in question 31 that they had a long-term condition’.

19/12/16 ☐

4c From the paperwork, there is not enough detail of the methodology to recalculate the indicator, which is a requirement of the process. In addition, please could the applicants provide a distribution of the non-response weights applied to the patient-level HRQoL scores

MRG – 12/01/2017

The applicants have provided histograms of the record level non-response weight for the 2015-16 GPPS. This is included in the embedded file in section 3.4. The worked example has been updated using real data.

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and a worked example with real data.

4d The formula given to calculate the directly standardised mean within the paperwork (section 4.4) does not match formula outlined in the worked example. The applicants are asked to ensure that both formulas match and are specifically tailored to this indicator. This point also applies to section 5.3, contextual information.

MRG – 12/01/2017

The applicants have developed a formula that is tailored specifically for this indicator. This is included in section 4.4 and 5.3, as well as the file showing the worked example.

4e Investigation to be undertaken into feasibility of including confidence intervals, which are not currently provided. These would add to the robustness of the indicator. Without them, comparisons will not be possible and therefore the indicator would not be useful.

MRG – 12/01/2017

The applicants are planning to investigate the feasibility of calculating confidence intervals for the indicator value, given that there is no set method for this type of calculation.

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Presentation and Interpretation

Rec. no

Issue or recommendation

Raised by / Date

Response or Action taken by applicant

Response date

Resolved

Sign off by / Date

5a The supporting Quality Assessment should identify that the long term condition list used in the indicator isn’t the recognised ONS long term condition list (which is clinically assessed), but that instead this is indicator is about self-assessment and as such will be limited in terms of comparability.

MRG – September 2013

A paragraph has been included in the limitations section (5.7) and this is also included in the Indicator Quality Statement.

03/01/17 ☐

5b The limitation that people with lots of conditions are more likely to have a worse quality of life than those with one condition needs to be caveated in the Quality Assessment.

MRG – September 2013

This is currently included as a caveat in Quality Statement for CCG OIS Indicator 2.1 and is planned to be included in future publications of the NHS OF Indicator 2 and 2.7.

05/01/17 ☐

5c Ipsos MORI provide a weighting factor for age, sex and deprivation and ethnicity but as yet haven’t looked into whether severity or numbers of conditions mean people are more likely to respond. This needs clearly stating in the Quality Assessment as a caveat.

MRG – September 2013

This is included in section 5.7 as a caveat and is included in the Indicator quality statement.

03/01/17 ☐

5d A caveat for this indicator should note that there is a difference between approval for using EQ-5D and whether it is suitable for use. The views of the Centre for

MRG – September 2013

IMAS: Applicant contacting the Centre for Health Economics and hoping for a response in the next week or so.

03/01/17 ☐

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Health Economics at York or Manchester group could be sought on this matter.

5e Within the graphs in section 5.2, it is advised that lines are used rather than shaded areas for ease of viewing.

MRG – 12/01/2017

The applicants have updated graphs in section 5.2 to remove shading and add lines.

5f In section 5.4, CCGs are advised to consider whether their figures are “disproportionally high”, however this should be disproportionately low.

MRG – 12/01/2017

The applicants have updated this sentence in section 5.4

5g Please can the applicant clarify in section 5.4 that although theoretically the indicator value can be negative, this is not seen in practice.

MRG – 12/01/2017

The applicants have clarified this in section 5.4.

5h The final paragraph in section 5.8 (improvement actions) relating to usual activities, employment and quality of life should be omitted, as the relationship is controversial.

MRG – 12/01/2017

The applicants have removed this paragraph from the form.

5i Section 5.6 discusses the possibility of using Minimally Important Differences (clinically significant changes) as a method of measuring change over time in this indicator. However, this is not accurate, as clinical significance is different to statistical significance. Change over time firstly has to take into account statistical variation and chance, which is why confidence intervals are needed. Information regarding clinical significance is useful, however cannot be

MRG – 12/01/2017

The applicants have updated section 5.6 with the new wording.

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used to measure significant change over time with this indicator.Suggested update:“The scientific literature has begun to publish guidance on the use of ‘minimally important differences’ (MID) in the use of EQ-5DTM index values to measure clinical changes in HRQoL. A MID is defined as the threshold value that has a meaningful clinical difference to the respondent. Studies suggest that this threshold has to be set for each disease group but published data include EQ-5DTM MIDs between 0.07 and 0.12[3][3][4][4]. Due to the fact that there is no agreed method to calculate confidence intervals for directly standardised EQ-5DTM scores, MIDs provide a useful potential alternative method for CCGs to quantify meaningful clinical change in their indicator value over time.”

5j Interpreting this indicator is currently very difficult due to the lack of confidence intervals or targets.

MRG – 12/01/2017

The applicants are planning to investigate the feasibility of calculating confidence intervals for the indicator value, given that there is no set method for this type of calculation.

Risks and Usefulness

Rec. no

Issue or recommendation

Raised by / Date

Response or Action taken by applicant

Response date

Resolved

Sign off

[3][3] https://www.ncbi.nlm.nih.gov/pubmed/16110932 [4][4] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2248572/

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by / Date

6a This indicator should not be used to performance manage organisations.

MRG – 12/01/2017

The applicants have included a sentence in sections 5.4 and section 2.1 to advise against using the indicator to performance manage organisations.

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