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DEFINING A STANDARD SET OF PATIENT-CENTERED OUTCOMES FOR PATIENTS WITH DEMENTIA

Authors:

Abstract

Materials and methods: ICHOM convened an international, multi-disciplinary working group of patient representatives, psychiatrists, carer, social worker, specialist nurses, methodologists, psychologists, and registry experts to review existing data and practices. Using a modified Delphi method, the group developed a consensus Standard Set of outcomes that were felt to matter most to patients, along with case-mix variables for risk adjustment, that we recommend collecting for all dementia patients. Results: The recommended Standard Set covers all types and stages of dementia. The outcomes include all-cause survival, cognition, neuropsychiatric behaviour, patient-reported domains of health-related quality of life and carer health-related quality of life. Baseline demographic, clinical, and condition information are included to improve interpretation of comparisons. Conclusion: We defined a Standard Set of outcomes for people with dementia. The Set provides a universal rubric for outcome comparisons, with the ultimate goal of improving the value of care.
IAGG 2017 World Congress
Evidence shows that person-centered care (PCC) can
improve care and quality of life for patients; often resulting
in fewer hospitalizations and ER visits, shorter hospital stays,
and other service use reductions leading to lower expendi-
tures. PCC is a recent health care priority (e.g. WHO, IOM,
and ACA), and given payment reforms for providing care to
older adults, creating a business case for PCC is imperative to
inform policy and highlight incentives beyond patient-level
outcomes for organizations to implement PCC. Therefore, the
project was conceived to develop a business case for PCC and
an interactive return-on-investment (ROI) calculator. These
two products can equip and encourage organizations consid-
ering adopting or expanding PCC with the requisite tools,
data, and motivation to systematically assess the business case
in their own circumstances. They highlight the factors that
affect the strength of the case, and shares encouraging evi-
dence suggesting that PCC can be nancially benecial.
OPERATIONALIZING PERSON-CENTERED CARE IN
PRIMARY CARE: AGERIATRICIAN’S PERSPECTIVE
L.Mosqueda, Keck School of Medicine of USC, Alhambra,
California
Person-centered care (PCC) is a holistic approach to
health care and social service provision that incorporates the
person’s values, preferences, and beliefs and holds them (and
those close to them) at the center of all decision-making. This
type of care represents an important departure from tradi-
tional health care that has been characterized as paternalis-
tic, silloed, and marked by poor or a lack of communication
between providers and care sites. With the newly established
denition of PCC and essential elements, health care pro-
viders now have a clear point of reference from which to
provide individualized PCC to their patients. However, sys-
tematic, environmental, and patient/family-level barriers and
facilitators remain that may help or hinder the provision of
PCC. The purpose of this presentation is to highlight the
ideal vs. realistic practice of implementing PCC into a pri-
mary care setting serving older adults. Multiple case studies
will be presented to support discussion.
SESSION 725 (SYMPOSIUM)
STANDARDISATION OF HEALTH OUTCOME
MEASURES AND VALUE-BASED HEALTHCARE
Chair: J.Banerjee, University Hospitals of Leicester NHS
Trust, Leicester, United Kingdom
The International Consortium for Health Outcomes
Measurement (ICHOM) was founded in 2012 with the
aim to propose consensus-based measurement tools and
documentation for different conditions and populations.
Variation in outcomes of healthcare is a global challenge and
to date there are no comprehensive globally relevant out-
come measures for older persons. Measuring and reporting
meaningful outcomes matter because they are more likely to
identify what is decient in a care pathway across organisa-
tional boundaries and lead to better collaborative care provi-
sion. It also provides opportunities for different localities or
organisations to compare variations in outcome and learn
from each other. There is paucity of standardized clinical out-
comes data beyond basic mortality and morbidity measures.
There is also a paucity of balancing measures with a systemic
inability to measure unanticipated harm. The deciency in
outcome measurements that matter most to patients repre-
sents a global barrier to driving health care improvement and
means providers have little information on which to judge
the effectiveness of interventions. Where available, outcomes
are not standardized and therefore hard to compare leading
to a slow pace of change and inability to learn from others.
More commonly there has been more emphasis placed on
process measures with the assumption that changing pro-
cesses improves outcomes for persons accessing healthcare.
ICHOM’s Working Groups (WG) follow a structured
consensus-driven modied Delphi technique to recommend
a core battery of measures that reect multiple outcomes
that matter to patients. This international standard of health
outcomes assessment has the potential to improve clinical
decision-making, to enable better commissioning and service
integration, to facilitate the exchange of scientic knowledge,
and overall to enhance the care of patients internationally
across different conditions. ICHOM has to date developed
19 standard sets and by 2017 at least 50% of the global dis-
ease burden (as dened by the WHO) will have been covered.
Anumber of national registries and organisations across the
world are already utilising ICHOM standard sets as their
outcome measures.
DEFINING ASTANDARD SET OF PATIENT-
CENTERED OUTCOMES FOR PATIENTS WITH
DEMENTIA
E.Reynish2,1, A.Burns1, C.Roberts1, 1. ICHOM Dementia
Working Group, London, United Kingdom, 2. Stirling
University, Stirling, United Kingdom
Materials and methods: ICHOM convened an interna-
tional, multi-disciplinary working group of patient represent-
atives, psychiatrists, carer, social worker, specialist nurses,
methodologists, psychologists, and registry experts to review
existing data and practices. Using a modied Delphi method,
the group developed a consensus Standard Set of outcomes
that were felt to matter most to patients, along with case-mix
variables for risk adjustment, that we recommend collecting
for all dementia patients.
Results: The recommended Standard Set covers all types
and stages of dementia. The outcomes include all-cause
survival, cognition, neuropsychiatric behaviour, patient-
reported domains of health-related quality of life and carer
health-related quality of life. Baseline demographic, clinical,
and condition information are included to improve interpre-
tation of comparisons.
Conclusion: We dened a Standard Set of outcomes for
people with dementia. The Set provides a universal rubric for
outcome comparisons, with the ultimate goal of improving
the value of care.
DEFINING ASTANDARD SET OF PATIENT-
CENTERED OUTCOMES FOR OLDER PERSONS
A.Akpan2,1, J.Banerjee3,1, C.Roberts1, 1. ICHOM Older
Person Working Group, London, United Kingdom, 2.
Aintree University Hospitals NHS Foundation Trust,
Aintree, United Kingdom, 3. University Hospitals of
Leicester NHS Trust, Leicester, United Kingdom
Innovation in Aging, 2 0 1 7, Vol. 1, No. S1
290
Copyedited by: OUP
Article
Full-text available
Background The International Consortium for Health Outcomes Measurement (ICHOM) develops condition-specific Standard Sets of outcomes to be measured in clinical practice for value-based healthcare evaluation. Standard Sets are developed by different working groups, which is inefficient and may lead to inconsistencies in selected PROs and PROMs. We aimed to identify common PROs across ICHOM Standard Sets and examined to what extend these PROs can be measured with a generic set of PROMs: the Patient-Reported Outcomes Measurement Information System (PROMIS®). Methods We extracted all PROs and recommended PROMs from 39 ICHOM Standard Sets. Similar PROs were categorized into unique PRO concepts. We examined which of these PRO concepts can be measured with PROMIS. Results A total of 307 PROs were identified in 39 ICHOM Standard Sets and 114 unique PROMs are recommended for measuring these PROs. The 307 PROs could be categorized into 22 unique PRO concepts. More than half (17/22) of these PRO concepts (covering about 75% of the PROs and 75% of the PROMs) can be measured with a PROMIS measure. Conclusion Considerable overlap was found in PROs across ICHOM Standard Sets, and large differences in terminology used and PROMs recommended, even for the same PROs. We recommend a more universal and standardized approach to the selection of PROs and PROMs. Such an approach, focusing on a set of core PROs for all patients, measured with a system like PROMIS, may provide more opportunities for patient-centered care and facilitate the uptake of Standard Sets in clinical practice.
Preprint
Full-text available
The International Consortium for Health Outcomes Measurement (ICHOM) develops condition-specific Standard Sets of outcomes to be measured in clinical practice for value-based healthcare evaluation. Standard Sets are developed by different working groups, which is inefficient and may lead to inconsistencies in selected PROs and PROMs. This study aimed to identify common PROs across ICHOM Standard Sets and examined to what extend these PROs can be measured with a generic set of PROMs: the Patient-Reported Outcomes Measurement Information System (PROMIS®).All PROs and recommended PROMs were extracted from all available ICHOM Standard Sets. Similar PROs were categorized into unique PRO concepts. Subsequently, it was examined which of these PRO concepts can be measured with PROMIS.A total of 216 PROs were identified in 28 ICHOM Standard Sets and 96 PROMs are recommended for measuring these PROs. Inconsistencies were found in selected PROs, terminology used, and recommended PROMs. The 216 PROs could be categorized into 21 unique PRO concepts. More than half (16/21) of these PRO concepts (covering 75% of the PROs and 79% of the PROMs) can be measured with a PROMIS measure.Considerable overlap was found in PROs across ICHOM Standard Sets, and large differences in terminology used and PROMs recommended, even for the same PROs. Inconsistencies in selected PROs and PROMs across Standard Sets questions the validity of the Standard Sets. We recommend a more universal and standardized approach to the selection of PRO and PROM, using PROMIS.
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