Embracing the perspectives of older adults in organising and evaluating person‐centred and
integrated care
Spoorenberg, Sophie
IMPORTANT NOTE: You are advised to consult the publisher's version (publisher's PDF) if you wish to cite from
it. Please check the document version below.
Document Version
Publisher's PDF, also known as Version of record
Publication date:
2017
Link to publication in University of Groningen/UMCG research database
Citation for published version (APA):
Spoorenberg, S. (2017). Embracing the perspectives of older adults in organising and evaluating person‐
centred and integrated care. Rijksuniversiteit Groningen.
Copyright
Other than for strictly personal use, it is not permitted to download or to forward/distribute the text or part of it without the consent of the author(s) and/or copyright holder(s), unless the work is under an open content license (like Creative Commons).
Take-down policy
If you believe that this document breaches copyright please contact us providing details, and we will remove access to the work immediately and investigate your claim.
Downloaded from the University of Groningen/UMCG research database (Pure): http://www.rug.nl/research/portal. For technical reasons the number of authors shown on this cover page is limited to 10 maximum.
in organising and evaluating
person-centred and integrated care
Printed by PrintQuest, Deventer
ISBN 978-90-367-9669-9
ISBN e-book 978-90-367-9668-2 © Sophie Spoorenberg 2017
All rights reserved. No part of this thesis may be reproduced or transmitted, in any form or by any means, without permission of the author.
This study was conducted within the Research Institute SHARE of the Graduate School of Medical Sciences, University Medical Center Groningen, University of Groningen and under auspices of the research program Public Health Research. The printing of this thesis was financially supported the Graduate School of Medical Sciences, Research Institute SHARE, University Medical Center Groningen and the University of Groningen. The Embrace study was funded by the Netherlands Organisation for Health Research and Development (ZonMw). The healthcare professionals involved were funded by the Dutch Healthcare Authority (NZa).
in organising and evaluating
person-centred and integrated care
Proefschrift
ter verkrijging van de graad van doctor aan de Rijksuniversiteit Groningen
op gezag van de
rector magnifi cus prof. dr. E. Sterken en volgens besluit van het College voor Promoties.
De openbare verdediging zal plaatsvinden op 19 april 2017 om 14.30 uur
door
Sophie Lise Willemijn Spoorenberg geboren op 18 september 1984
Prof. dr. H.P.H. Kremer
Copromotor Dr. K. Wynia
Beoordelingscommissie Prof. dr. S.E.J.A. de Rooij Prof. dr. F.G. Schellevis Prof. dr. M.J. Schuurmans
Ronald Uittenbroek
Herfst
Het gras verdort, de blaadjes worden bruin, De bloemen laten triest hun kopjes hangen. Jawel, de herfst heeft de natuur gevangen – En toch staar ik afgunstig naar mijn tuin. De herfst komt immers alle jaren weer, Maar in ons leven komt hij maar één keer. Driek van Wissen
General Introduction
The Geriatric ICF Core Set reflecting health-related problems in community-living older adults aged 75 years and older without dementia: development and validation
Disability and Rehabilitation 2015
Health-related problems and their 1-year’s changes as assessed with the Geriatric ICF Core Set (GeriatrICS) in community-living frail older adults receiving person-centred and integrated care by Embrace Submitted
Embrace, a model for integrated elderly care: study protocol of a randomized controlled trial on the effectiveness regarding patient outcomes, service use, costs, and quality of care
BMC Geriatrics 2013
Effects of a population-based, person-centered and integrated care service on health, wellbeing, and self-management of community-living older adults: a randomized controlled trial on Embrace Submitted
Experiences of community-living older adults receiving integrated care based on the Chronic Care Model: a qualitative study
PLoS One 2015 General Discussion Summary Samenvatting Dankwoord Curriculum Vitae
Publications Embrace | SamenOud SHARE | Previous dissertations CHAPTER 1 CHAPTER 2 CHAPTER 3 CHAPTER 4 CHAPTER 5 CHAPTER 6 CHAPTER 7 APPENDIX s 9 s 23 s 41 s 61 s 83 s 111 s 151 s 173 s 179 s 185 s 191 s 195 s 199
1
Person-centred and integrated care may be a means to meet the health needs of older adults who are dealing with the consequences of ageing. This thesis provides insight into the perspectives of older adults on ageing, their health-related problems and associated needs, their experiences with person-centred and integrated care and support, and its impact on patient outcomes. This first chapter outlines the consequences of ageing, the challenges this poses to the current healthcare system and the possible solution of providing person-centred and integrated care. Furthermore, it describes the context of the Dutch healthcare system, models for centred and integrated care, the newly developed person-centred and integrated care service ‘Embrace’, and the research methods that were used. Finally, the objectives and outline of this thesis will be presented.
AGEING AND ITS CONSEQUENCES
Worldwide, the number of older adults is growing rapidly. In 2060, the number of people aged 65 years or older is expected to be equivalent to 30% of the population in the countries of the European Union, compared to 17% in 2008.1 In the Netherlands, the number of adults
aged 65 years or older will increase from 2.7 million in 2012 to 4.7 million in 2040. It is estimated that by 2040, 26% of the Dutch population will be 65 years or older, compared to 16% in 2012.2 This ‘greying of the population’ is due to decreasing fertility rates and
increasing life expectancy.3
People often struggle with ageing as it is a progressive and irreversible process that is characterised by changes, losses and the need for adaptation. Ageing inevitably leads to physiological changes and an imbalance between damage and repair at the molecular and cellular levels.4-7 The age-related loss of muscle mass and strength, for example, leads
to decreased physical functioning and mobility impairments.5,8,9 Cognitive abilities also
diminish, resulting in, for example, memory and emotional problems.5,8,10,11 Physiological and
cognitive changes may also lead to problems in performing daily activities, such as cooking, cleaning and dressing.11 In addition, ageing is often associated with social changes, such
as the loss of friends and relatives, and declining social participation. These social losses may lead to loneliness.3,11-16 Ageing is also associated with psychological changes, which may
lead to loss of control and increasing dependence.17-19 This prospect is feared by most older
adults,20 as they strive to remain independent and ‘age in place’, despite having to deal with
The loss of reserve capacity associated with ageing also increases the risk of developing multiple concurrent chronic diseases, or ‘multimorbidity’.3,4,26-31 More than half of the
population aged 75 years and over suffer from multimorbidity, with the most common diseases including hypertension, hyperlipidemia, ischemic heart disease, diabetes and arthritis.26,27,32,33 Having multiple chronic conditions is negatively associated with poor quality
of life, disability and mortality.4,27,30,34 A number of diseases are known to result in a great
burden of disability, such as cardiovascular disease, chronic obstructive pulmonary disease (COPD), diabetes, osteoarthritis, sensory impairments, dementia and depressive disorders. Cardiovascular diseases and COPD contribute most to mortality in older adults.3,31
Although ageing is inevitable, its impact on health, functioning and wellbeing differs between individuals due to genetic, socioeconomic, environmental and behavioural differences.35,36 The
differences in the experiences of ageing are probably due to an individual’s compensating mechanisms, their ability to adapt and their resilience,37 and these determine the quality of life.36
Some individuals, for example, may be greatly impaired and dependent, resulting in social and psychological changes associated with poor a quality of life, whereas other chronically ill older adults may still be in control, autonomous and have a great quality of life. In addition to these inter-individual differences in ageing, the level of functioning of an individual also frequently fluctuates.38-40
BOX 1 s Disabilities and health according to the ICF
As older adults frequently have to deal with multiple chronic conditions, a disease-oriented approach to functioning and health is not appropriate. The World Health Organization (WHO) therefore developed an international classification system for describing health and health-related states from a biopsychosocial perspective: the International Classification of Functioning, Disability and Health (ICF). The ICF provides a standard language for the evaluation of functioning and disability associated with someone’s health status. According to the ICF, functioning is ‘an umbrella term encompassing all the body functions, activities and participation’ (p. 3), while disability is ‘an umbrella term for impairments, activity limitations or participation restrictions’ (p. 3). The ICF comprises over 1450 categories, divided over the components: Body Functions and Structures, Activities and Participation, and Environmental Factors. Personal Factors interact with these ICF components, but are not classified, as they vary between cultures and societies.41
1
AGEING IN PLACE
Older adults in industrialised countries increasingly remain living in the community for several reasons. First and foremost, older adults prefer to age in place and to participate in society.24,42,43 Second, governments stimulate independent living as a way to deal with the
greying of the population and because of the economically beneficial effect on healthcare provision and costs.44 However, the realisation of ageing in place is threatened at both the
governmental and the patient level, with governments experiencing challenges in adapting their funding and service delivery systems,45,46 and older adults experiencing increasing
levels of dependence and feelings of losing control and insecurity, which leads to more service use and a higher risk of relocation to an institutional setting.18,19,47 Societies are
therefore challenged to support older adults to better deal with the negative consequences of ageing47 and to age successfully.48
NEED TO ADAPT HEALTHCARE SYSTEMS
Current western healthcare systems have been mainly designed to provide short-term care and support to generally young and middle-aged people who suffer from a single or an acute disease (see Box 2 for the Dutch healthcare system).49,50 However, the majority of
older adults who need care suffer from multimorbidity, and may therefore be served by several different health and social care professionals.51-53 The complex and long-term care
needed by older adults with multimorbidity presents a challenge to the healthcare system, which needs to organise and coordinate care. Often there is fragmented, inadequately coordinated care and support for older adults.49,54 This may have negative consequences,
such as misunderstanding by the patient, adverse drug events due to polypharmacy, low treatment participation and even treatment errors.52,53 Coordination between primary care,
secondary care, social care and prevention is therefore essential.45 Ideally, care and support
for older adults has to be tailored to their situation, preferences, needs and goals.31 Current
healthcare systems are not appropriately organised to be able to address these challenges for ageing individuals and need to be reorganised in such a way that they meet the needs of older adults and promote ageing in place.40
PERSON-CENTRED AND INTEGRATED CARE AND SUPPORT
Person-centred and integrated care services (see Box 3 for definitions) are often mentioned as a solution which can transform the healthcare system into one that meets the needs of older adults.4,31,45,50,60 Person-centred and integrated care is organised around the needs
of the individual and the family. It provides a continuum of care and coordinates it across providers and settings.45
BOX 2 s The Dutch healthcare system
In the Netherlands, healthcare is divided into preventive, primary, secondary and long-term care. Municipalities are responsible for social care, population-based disease prevention and health promotion. Once a health problem occurs, patients enter the primary care system – in most cases through a visit to their general practitioner (GP). GPs act as gatekeepers for secondary care: patients need their referral to specialised medical care and hospital care. Homes for the elderly, nursing homes and home care organisations provide long-term care.55 Older adults aged
75 and over visit their GP on average fifteen times a year and medical specialists nearly four times a year.55,56 More than half of the women and
nearly one-third of men over the age of 80 receive home care55 and 15-25% receive informal care.57 Twenty percent of those aged 75 and over
also provide informal care to others.58 Nearly 5% of those aged 75 to 80 live in an institution, increasing to 57% of those above the age of 95.59
BOX 3 s Definitions of person-centred and integrated care
Person-centred and integrated care currently lack clear definitions.60,61 For
the purpose of this thesis we use the definitions as proposed by the World Health Organization (WHO), which defines person-centred care as ‘care approaches and practices that see the person as a whole with many levels of needs and goals, with these needs coming from their own personal social determinants of health’ (p. 48). It defines integrated health services as ‘the management and delivery of health services such that people receive a continuum of health promotion, disease prevention, diagnosis, treatment, disease management, rehabilitation and palliative care services, through the different levels and sites of care within the health system, and according to their needs throughout the life course’ (p. 48).45
1
The Chronic Care Model
A well-known person-centred and integrated care model is the Chronic Care Model (CCM),62,63
which was developed in the US to improve health outcomes of chronically ill patients (Figure 1). The CCM describes a healthcare system that is linked to community organisations and addresses the needs of patients with chronic diseases by off ering proactive, person-centred and integrated care. Its goal is to achieve productive interactions between an informed and activated patient and a prepared, proactive team of professionals. To meet that goal, four key evidence-based and interdependent elements are incorporated into the model: self-management support, delivery system design, decision support and clinical information systems.62
Although the CCM has become a popular aid in transforming healthcare systems, evidence on the eff ectiveness of the full CCM regarding clinical outcomes is still limited and mainly concerns its use in groups of patients with specifi c chronic diseases, such as COPD, asthma, diabetesand cardiovascular disease.53,64-67 Only three CCM-based studies specifi cally targeted
older adults. A study on ‘Guided Care’ for older adults showed no signifi cant eff ect on self-rated mental and physical health.68 The ‘frail older Adults: Care in Transition-study’ found only
small intervention eff ects for instrumental activities of daily living.69 However, these two
studies only focused on people who were already frail or had complex care needs. Only one study on the ‘Senior Health Clinic model’ investigated the eff ects of the CCM on the whole population of older adults living in the community. That study showed that older adults receiving the intervention had a stable health-related quality of life despite physical function decline, whereas the control groups showed a deterioration in their quality of life.70
Population segmentation by the Kaiser Permanente Triangle
Older adults can be stratified into homogeneous groups with comparable healthcare needs (i.e. population segmentation). Population segmentation may offer a means to provide effective and efficient care and support suitable for the total population of older adults living in the community, but which is tailored to the needs of the individual.71-74 This
segmentation method focuses on entire populations in a community and not just on those in need of urgent care. Those older adults who are in poor health may need intense counselling with an individual-needs approach, meeting the broad spectrum of health-related problems they may experience.74,75 Older adults who are still vital should also be prepared to cope
with the consequences of ageing.76 Health promotion focusing on prevention and
self-management behaviour40 may decrease the risk of chronic diseases and could thus be
important to all older adults.26,31 Nonetheless, inter- and intra-individual differences within
groups remain, indicating a need for flexibility in the level of intensity of care and support provided.39,77,78
A first attempt to segment a patient population was done by Kaiser Permanente (KP), a non-profit organisation providing integrated healthcare.79 This segmentation model has
evolved over time into the KP Triangle (Figure 2). It classifies the population into subgroups based on the distribution of risk in relation to healthcare needs, in order to adapt the care and support to the individual needs. The KP Triangle differentiates between three levels, with corresponding intervention strategies: self-management support for patients with a relatively low risk of healthcare needs; disease management or care management for patients with increased levels of risk of complex care needs; and intensive case management for patients with high complexity. Preventive care is provided at all three levels.53
1
BOX 4 s National Care for the Elderly ProgrammeThe Dutch Ministry of Health, Welfare and Sport (VWS) launched the ‘National Care for the Elderly Programme’ (in Dutch: Nationaal Programma Ouderenzorg [NPO]) in 2008, with the goal of transforming the Dutch healthcare system for older adults.80 The goal of this programme was
to improve care, quality of life and self-reliance of older people by restructuring care and support – from the perspective of older adults themselves – disregarding the existing rules, structures and funding. The prerequisite was that the integration, quality and costs of the care and support had to improve. All eight Dutch university medical centres started regional collaboration and launched about 75 projects and experiments. One of the experiments was ‘Embrace’.
In each general practice, a multidisciplinary Elderly Care Team – consisting of a GP, a nursing home physician81 and two case managers (district nurse and social worker) – provides care
and support to older adults. Older adults are stratified into three risk profiles (see Box 5 for segmentation within Embrace). The intensity, focus and individual or group approach of the care and support depends on the older adult’s risk profile. All older adults are invited to follow a self-management support and prevention programme focusing on staying healthy and independent for as long as possible. The programme includes regular Embrace community meetings, in which self-management abilities are encouraged and during which local healthcare and welfare organisations provide information on health maintenance, physical and social activities, and dietary recommendations. In addition, frail people and those with complex care needs receive individual support from a case manager. The older adult and their case manager jointly develop an individual care and support plan that focuses on all health-related problems. The case managers monitor changes in the medical, psychosocial or living situation, and are responsible for the realisation of the plan. During monthly meetings, the Elderly Care Team discusses and evaluates the health status and social situation of the older adults. If necessary, they take proactive steps in dialogue with the older adult to prevent deterioration.
Embrace
Embrace (in Dutch: SamenOud, i.e. ageing together) is a population-based, person-centred and integrated care service for community-living older adults based on the CCM 62,63 and the
Several studies are being conducted on the impact of Embrace. They focus on patient
outcomes, service use, costs and quality of care. The focus in this thesis is on the impact of
Embrace from the patient perspective and on patient outcomes.
OBJECTIVES OF THE THESIS
The main objectives of this thesis are twofold. The first objective is to gain knowledge on the consequences of ageing and the needs of older adults. The second objective is to examine the impact of receiving person-centred and integrated care and support through Embrace and the extent to which it meets the needs of older adults. The following research questions will be answered:
1. What are the most relevant health-related problems of community-living older adults? 2. What is the prevalence, severity and change in health-related problems as experienced
by community-living older adults receiving twelve months of person-centred and integrated care and support from Embrace?
3. What are the effects of person-centred care and support through Embrace on patient-reported outcomes in the domains of ‘Health’, ’Wellbeing’ and ‘Self-management’? 4. What are the opinions and experiences of community-living older adults with respect to
ageing and person-centred and integrated care and support? BOX 5 s Embrace risk profiles
Participants are stratified into three risk profiles using complexity of care needs, as measured by the INTERMED for the Elderly Self-Assessment (IM-E-SA),82 and the level of frailty, as measured by the Groningen Frailty
Indicator (GFI).83,84 The risk profiles are:
• Complex care needs: concerning participants with complex care needs at risk of assignment to a hospital or nursing home (IM-E-SA ≥16). • Frail: concerning participants at high risk of complex care needs
(IM-E-SA <16 and a GFI ≥5 ).
• Robust: concerning participants at risk of the consequences of ageing only (IM-E-SA <16 and GFI <5).
1
OUTLINE OF THE THESIS
In Chapter 2, we present the development and validation of a Geriatric ICF Core Set (GeriatrICS), which is currently used as a history-taking tool by Embrace case managers. In Chapter 3, we investigate the prevalence, severity and twelve-month change in prevalence and severity of health-related problems as measured with the GeriatrICS. In Chapter 4, we describe the design of the study on the effectiveness of Embrace, while in Chapter 5, we present the results of this study. In Chapter 6, we present the results of a qualitative study among older adults who received integrated care and support through Embrace. In Chapter 7, we summarise and discuss the main results and present the implications of this thesis for practice and research. The timeline of the different studies is presented in Figure 3.
FIGURE 3 s Timeline of the Embrace studies performed in this thesis
Design of RCT
Chapter 4
Development and validation GeriatrICS
Chapter 2
RCT
Chapter 5
Pretest-posttest study using GeriatrICS
Chapter 3
Qualitative study
REFERENCES
1. Eurostat. Europe in figures. Eurostat yearbook 2010. Luxembourg: Publications Office of the European Union; 2010. 2. CBS. Prognose bevolking: kerncijfers, 2006-2050. Available from: http://statline.cbs.nl/StatWeb/publication/?VW=
T&DM=SLNL&PA=03766ned&D1=11-12&D2=0&D3=0-4,14,24,34,l&HD=111108-0748&HDR=T&STB=G1,G2. 3. World Health Organization. World report on ageing and health. Luxembourg; 2015.
4. Fabbri E, Zoli M, Gonzalez-Freire M, Salive ME, Studenski SA, Ferrucci L. Aging and multimorbidity: New tasks, priorities, and frontiers for integrated gerontological and clinical research. J Am Med Dir Assoc. 2015;16(8):640-647.
5. Anton SD, Woods AJ, Ashizawa T, et al. Successful aging: Advancing the science of physical independence in older adults. Ageing Res Rev. 2015;24:304-327.
6. Vaupel JW. Biodemography of human ageing. Nature. 2010;464(7288):536-542. 7. Kirkwood TB. Understanding the odd science of aging. Cell. 2005;120(4):437-447.
8. Steiber N. Population aging at cross-roads: Diverging secular trends in average cognitive functioning and physical health in the older population of Germany. PLoS One. 2015;10(8):e0136583.
9. Gielen E, Verschueren S, O’Neill TW, et al. Musculoskeletal frailty: A geriatric syndrome at the core of fracture occurrence in older age. Calcif Tissue Int. 2012;91(3):161-177.
10. Harada CN, Natelson Love MC, Triebel KL. Normal cognitive aging. Clin Geriatr Med. 2013;29(4):737-752. 11. Pardon M, Bondi MW. Behavioral neurobiology of aging. Berlin Heidelberg: Springer-Verlag; 2012.
12. Taube E, Jakobsson U, Midlov P, Kristensson J. Being in a bubble: The experience of loneliness among frail older people. J Adv Nurs. 2016;72(3):631-640.
13. Thumala Dockendorff DC. Healthy ways of coping with losses related to the aging process. Educational
Gerontology. 2014;40:363-384.
14. Hacihasanoglu R, Yildirim A, Karakurt P. Loneliness in elderly individuals, level of dependence in activities of daily living (ADL) and influential factors. Arch Gerontol Geriatr. 2012;54(1):61-66.
15. Shiovitz-Ezra S, Leitsch SA. The role of social relationships in predicting loneliness: The National Social Life, Health, and Aging Project. Social Work Research. 2010;34:157-167.
16. Desrosiers J, Robichaud L, Demers L, Gelinas I, Noreau L, Durand D. Comparison and correlates of participation in older adults without disabilities. Arch Gerontol Geriatr. 2009;49(3):397-403.
17. Krause N. Age and decline in role-specific feelings of control. J Gerontol B Psychol Sci Soc Sci. 2007;62(1):S28-35. 18. Lachman ME. Perceived control over aging-related declines: Adaptive beliefs and behaviors. CDPS. 2006;15:282-286. 19. Wolinsky FD, Wyrwich KW, Babu AN, Kroenke K, Tierney WM. Age, aging, and the sense of control among older
adults: A longitudinal reconsideration. J Gerontol B Psychol Sci Soc Sci. 2003;58(4):S212-220.
20. Marcoen A, Coleman PG, O’Hanlon A. Chapter 3. Psychological ageing. In: Bond J, Peace S, Dittman-Kohli F, Westerhof G, eds. Ageing in society. Trowbridge, Wiltshire, Great Britain: SAGE Publications Ltd; 2007.
21. Calasanti T. Combating ageism: How successful is successful aging? The Gerontologist. 2015:1-9.
22. Hillcoat-Nalletamby S. The meaning of “independence” for older people in different residential settings. J Gerontol
B Psychol Sci Soc Sci. 2014;69(3):419-430.
23. Bell S, Menec V. “You don’t want to ask for the help” The imperative of independence: Is it related to social exclusion? J Appl Gerontol. 2015;34(3):NP1-21.
24. Lofqvist C, Granbom M, Himmelsbach I, Iwarsson S, Oswald F, Haak M. Voices on relocation and aging in place in very old age – A complex and ambivalent matter. Gerontologist. 2013;53(6):919-927.
25. Quine S, Morrell S. Fear of loss of independence and nursing home admission in older Australians. Health Soc Care
Community. 2007;15(3):212-220.
26. Salive ME. Multimorbidity in older adults. Epidemiol Rev. 2013;35:75-83.
27. Marengoni A, Angleman S, Melis R, et al. Aging with multimorbidity: A systematic review of the literature. Ageing
Res Rev. 2011;10(4):430-439.
28. Boyd C, Fortin M. Future of multimorbidity research: How should understanding of multimorbidity inform health system design? Public Health Rev. 2010;32(2):451-474.
29. Iliffe S, Kharicha K, Harari D, Swift C, Gillmann G, Stuck AE. Health risk appraisal in older people 2: The implications for clinicians and commissioners of social isolation risk in older people. Br J Gen Pract. 2007;57(537):277-282. 30. Fried LP, Ferrucci L, Darer J, Williamson JD, Anderson G. Untangling the concepts of disability, frailty, and
comorbidity: Implications for improved targeting and care. J Gerontol A Biol Sci Med Sci. 2004;59(3):255-263. 31. Prince MJ, Wu F, Guo Y, et al. The burden of disease in older people and implications for health policy and practice.
Lancet. 2015;385(9967):549-562.
32. Marengoni A, Angleman S, Meinow B, et al. Coexisting chronic conditions in the older population: Variation by health indicators. Eur J Intern Med. 2016;31:29-34.
1
33. Fortin M, Stewart M, Poitras ME, Almirall J, Maddocks H. A systematic review of prevalence studies on multimorbidity: Toward a more uniform methodology. Ann Fam Med. 2012;10(2):142-151.
34. Prados-Torres A, Calderon-Larranaga A, Hancco-Saavedra J, Poblador-Plou B, van den Akker M. Multimorbidity patterns: A systematic review. J Clin Epidemiol. 2014;67(3):254-266.
35. Topinkova E. Aging, disability and frailty. Ann Nutr Metab. 2008;52(Suppl 1):6-11.
36. Lowsky DJ, Olshansky SJ, Bhattacharya J, Goldman DP. Heterogeneity in healthy aging. J Gerontol A Biol Sci Med
Sci. 2014;69(6):640-649.
37. Young Y, Frick KD, Phelan EA. Can successful aging and chronic illness coexist in the same individual? A multidimensional concept of successful aging. J Am Med Dir Assoc. 2009;10(2):87-92.
38. Gill TM, Allore HG, Hardy SE, Guo Z. The dynamic nature of mobility disability in older persons. J Am Geriatr Soc. 2006;54(2):248-254.
39. Hardy SE, Dubin JA, Holford TR, Gill TM. Transitions between states of disability and independence among older persons. Am J Epidemiol. 2005;161(6):575-584.
40. Beard JR, Bloom DE. Towards a comprehensive public health response to population ageing. Lancet. 2015;385(9968):658-661.
41. World Health Organization. International Classification of Functioning, Disability and Health: ICF. Geneva, Switzerland; 2001.
42. Sixsmith J, Sixsmith A, Fange AM, et al. Healthy ageing and home: The perspectives of very old people in five European countries. Soc Sci Med. 2014;106:1-9.
43. Wiles JL, Leibing A, Guberman N, Reeve J, Allen RE. The meaning of “aging in place” to older people. Gerontologist. 2012;52(3):357-366.
44. Plochg T. Reconfiguring health professionalism towards addressing multimorbidity. Eurohealth. 2013;19:24-27. 45. World Health Organization. WHO global strategy on people-centred and integrated health services. Geneva,
Switzerland; 2015.
46. Jakubowski E, Saltman RB. The changing national role in health system governance. A case-based study of 11
European countries and Australia. Copenhagen, Denmark: World Health Organization; 2013.
47. Claassens L, Widdershoven GA, Van Rhijn SC, et al. Perceived control in health care: A conceptual model based on experiences of frail older adults. J Aging Stud. 2014;31:159-170.
48. Morley JE. Aging successfully: The key to aging in place. J Am Med Dir Assoc. 2015;16(12):1005-1007.
49. Banerjee S. Multimorbidity – Older adults need health care that can count past one. Lancet. 2015;385(9968):587-589. 50. World Health Organization. Roadmap: Strengthening people centred health-systems in the WHO European region. A
framework for action towards coordinated/integrated health services delivery (CIHSD). Copenhagen, Denmark; 2013.
51. Vogeli C, Shields AE, Lee TA, et al. Multiple chronic conditions: Prevalence, health consequences, and implications for quality, care management, and costs. J Gen Intern Med. 2007;22(Suppl 3):391-395.
52. Lehnert T, Heider D, Leicht H, et al. Review: Health care utilization and costs of elderly persons with multiple chronic conditions. Med Care Res Rev. 2011;68(4):387-420.
53. Nolte E, McKee M. Caring for people with chronic conditions – A health system perspective. Maidenhead, Berkshire, England: Open University Press; 2008.
54. Boyd CM, Reider L, Frey K, et al. The effects of guided care on the perceived quality of health care for multi-morbid older persons: 18-month outcomes from a cluster-randomized controlled trial. J Gen Intern Med. 2010;25(3):235-242.
55. Schäfer W, Kroneman M, Boerma W, et al. The Netherlands: Health system review. Health Syst Transit. 2010;12(1). 56. Wingen M, Otten F. Trends in consultaties huisarts, specialist en fysiotherapeut door ouderen. Bevolkingstrends.
2007:84-91.
57. Broer J, Kuiper J. Gezondheidsprofiel Groningen 2012. Groningen, the Netherlands: GGD Groningen; 2013. 58. de Klerk M, de Boer A, Plaisier I, Schyns P, Kooiker S. Informele hulp: Wie doet er wat? Den Haag, the Netherlands:
Sociaal en Cultureel Planbureau; 2015.
59. de Klerk M. Zorg in de laatste jaren. Den Haag, the Netherlands: Sociaal en Cultureel Planbureau; 2011.
60. Kogan AC, Wilber K, Mosqueda L. Person-centered care for older adults with chronic conditions and functional impairment: A systematic literature review. J Am Geriatr Soc. 2016;64(1):e1-7.
61. American Geriatrics Society Expert Panel on Person-Centered Care. Person-centered care: A definition and essential elements. J Am Geriatr Soc. 2016;64(1):15-18.
62. Wagner EH, Austin BT, Davis C, Hindmarsh M, Schaefer J, Bonomi A. Improving chronic illness care: Translating evidence into action. Health Aff (Millwood). 2001;20(6):64-78.
63. World Health Organization. Active ageing – A policy framework. Geneva, Switzerland; 2002.
64. Davy C, Bleasel J, Liu H, Tchan M, Ponniah S, Brown A. Effectiveness of chronic care models: Opportunities for improving healthcare practice and health outcomes: A systematic review. BMC Health Serv Res. 2015;15:194.
65. Zwar N, Harris M, Griffi th R, et al. A systematic review of chronic disease management. UNSW: Research Centre for Primary Health Care and Equity, School of Public Health and Community Medicine; 2006.
66. Singh D, Ham C. Improving care for people with long-term conditions: A review of UK and international frameworks. Birmingham: NHS Institute for Innovation and Improvement; 2006.
67. Coleman K, Austin BT, Brach C, Wagner EH. Evidence on the Chronic Care Model in the new millennium. Health Aff
(Millwood). 2009;28(1):75-85.
68. Boult C, Leff B, Boyd CM, et al. A matched-pair cluster-randomized trial of Guided Care for high-risk older patients.
J Gen Intern Med. 2013;28(5):612-621.
69. Hoogendijk EO, van der Horst HE, van de Ven PM, et al. Eff ectiveness of a Geriatric Care Model for frail older adults in primary care: Results from a stepped wedge cluster randomized trial. Eur J Intern Med. 2016;28:43-51. 70. Stock R, Mahoney ER, Reece D, Cesario L. Developing a senior healthcare practice using the Chronic Care Model:
Eff ect on physical function and health-related quality of life. J Am Geriatr Soc. 2008;56(7):1342-1348.
71. Vuik SI, Mayer EK, Darzi A. Patient segmentation analysis off ers signifi cant benefi ts for integrated care and support. Health Aff (Millwood). 2016;35(5):769-775.
72. Zhou YY, Wong W, Li H. Improving care for older adults: A model to segment the senior population. Perm J. 2014;18(3):18-21.
73. Eissens van der Laan MR, van Off enbeek MA, Broekhuis H, Slaets JP. A person-centred segmentation study in elderly care: Towards effi cient demand-driven care. Soc Sci Med. 2014;113:68-76.
74. Lynn J, Straube BM, Bell KM, Jencks SF, Kambic RT. Using population segmentation to provide better health care for all: The “Bridges to Health” model. Milbank Q. 2007;85(2):185-208.
75. OECD. Health reform: Meeting the challenge of ageing and multiple morbidities. OECD Publishing; 2011. 76. Boström M, Bravell M, Lundgren D, Björklund A. Promoting sense of security in old-age care. Health. 2013;5:56-63. 77. Santoni G, Angleman S, Welmer AK, Mangialasche F, Marengoni A, Fratiglioni L. Age-related variation in health
status after age 60. PLoS One. 2015;10(3):e0120077.
78. Lafortune L, Beland F, Bergman H, Ankri J. Health status transitions in community-living elderly with complex care needs: A latent class approach. BMC Geriatr. 2009;9:6.
79. Garfi eld SR. The delivery of medical care. Perm J. 2006;10(2):46-56.
80. Lutomski JE, Baars MA, Schalk BW, et al. The development of the Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS): A large-scale data sharing initiative. PLoS One. 2013;8(12):e81673.
81. Schols JM, Crebolder HF, van Weel C. Nursing home and nursing home physician: The Dutch experience. J Am Med
Dir Assoc. 2004;5(3):207-212.
82. Peters L, Boter H, Slaets J, Buskens E. Development and measurement properties of the self assessment version of the INTERMED for the elderly to assess case complexity. J Psychosom Res. 2013;74:518-522.
83. Peters LL, Boter H, Buskens E, Slaets JP. Measurement properties of the Groningen Frailty Indicator in home-dwelling and institutionalized elderly people. J Am Med Dir Assoc. 2012;13:546-551.
84. Steverink N, Slaets JP, Schuurmans H, Van Lis M. Measuring frailty: Development and testing of the Groningen Frailty Indicator (GFI). Gerontologist. 2001;41(1):236.
2
health-related problems in community-living
older adults aged 75 years and older without
dementia: development and validation
SLW Spoorenberg SA Reijneveld B Middel RJ Uittenbroek HPH Kremer K Wynia
ABSTRACT
Purpose s The aim of the present study was to develop a valid Geriatric ICF Core Set reflecting relevant health-related problems of community-living older adults without dementia.
Methods s A Delphi study was performed in order to reach consensus (≥70% agreement) on second-level categories from the International Classification of Functioning, Disability and Health (ICF). The Delphi panel comprised 41 older adults, medical and non-medical experts. Content validity of the set was tested in a cross-sectional study including 267 older adults identified as frail or having complex care needs.
Results s Consensus was reached for 30 ICF categories in the Delphi study (14 Body functions, 10 Activities and Participation, and 6 Environmental Factors categories). Content validity of the set was high: the prevalence of all problems was >10%, except for d530 Toileting. The most frequently reported problems were b710 Mobility of joint functions (70%), b152 Emotional functions (65%), and b455 Exercise tolerance functions (62%). No categories had missing values.
Conclusion s The final Geriatric ICF Core Set is a comprehensive and valid set of 29 ICF categories, reflecting the most relevant health-related problems among community-living older adults without dementia. This Core Set may contribute to optimal care provision and support of the older population.
IMPLICATIONS FOR REHABILITATION
• The Geriatric ICF Core Set may provide a practical tool for gaining an understanding of the relevant health-related problems of community-living older adults without dementia.
• The Geriatric ICF Core Set may be used in primary care practice as an assessment tool in order to tailor care and support to the needs of older adults.
• The Geriatric ICF Core Set may be suitable for use in multidisciplinary teams in integrated care settings, since it is based on a broad range of problems in functioning. • Professionals should pay special attention to health problems related to mobility and emotional functioning since these are the most prevalent problems in community-living older adults.
2
INTRODUCTION
An understanding of the health-related problems of older adults is essential in order to tailor health care to their needs.1,2 At present, >50% of those 60 years and older have
multimorbidity3 and this percentage will further increase in the coming years.4,5 The majority
of these patients rely on several health care professionals,6,7 as they require assistance
in various domains.5 This increases the risk of fragmented care,4,6 which often leads to
misunderstanding by the patient, adverse drug events, impaired treatment participation and even treatment errors.5,6 Preferably, older adults should receive care and support that
is integrated and coordinated, taking all health-related aspects into account, and tailored to their situation.1,2 A first step towards that goal is to gain a clear understanding of the
relevant health-related problems of older adults.
A broad form of functional assessment could provide better insight into these health-related problems.8 At present, several assessment instruments are in use that focus on
medical, physical, psychological and social functioning. A well-known multi-dimensional method to assess health status among older adults is a comprehensive geriatric assessment. This type of assessment is quite extensive, and therefore time-consuming, and requires the involvement of a multidisciplinary team.9
One assessment instrument that is increasingly used on the older population is the EASY-Care Standard, which aims to be more efficient than traditional geriatric assessment tools. EASY-Care was developed by health professionals using conventional generic measurement instruments in order to support multidisciplinary, personalized care.10,11
A relatively new approach that might offer a valid and reliable basis for identification of relevant health-related problems is offered by the International Classification of Functioning, Disability and Health (ICF). This WHO classification is an internationally accepted frame of reference and provides a unified language for the evaluation of functioning and disability associated with a person’s health status – both at the individual and the population level.12 According to the ICF, functioning is ‘an umbrella term encompassing all
body functions, activities, and participation’ [p. 3], while disability is ‘an umbrella term for impairments, activity limitations, or participation restrictions’ [p. 3].13 The ICF comprises
over 1,450 categories, which prohibits its use in daily practice.14 Therefore, derivatives of
the ICF have been developed to describe the broad spectrum of disabilities of specific patient populations.15 It was in this manner that the ICF Core Sets were developed, using
settings,18,19 and to represent the perspectives of various professionals.20 Another method
that might be used to develop a Core Set is to link ICF categories to existing measurement instruments.21,22
To date, only a Core Set for older adults in early post-acute rehabilitation facilities has been developed.19 No ICF Core Set for the non-demented community-living older population
was found that was developed from a conceptual point of view. Hence, the aim of the present study is to develop a comprehensive and valid Geriatric ICF Core Set that reflects relevant health-related problems of community-living older adults without the diagnosis of dementia. The set will be based on the ICF since it (1) provides a common language for describing health and health-related states, (2) describes the broad concept of health, and (3) offers the possibility to involve the target population in the category selection process, thus increasing the content validity of the set.23
METHODS
Study designThis study consists of two sub-studies. First, a Delphi study24,25 was performed to reach
consensus on a Core Set of ICF categories that describes the most relevant health-related problems of community-living older adults aged 75 years and older (without dementia). Second, the content validity of the Core Set was verified in a cross-sectional study among a sample of older adults aged 75 years and older who participated in a randomized controlled trial on the effectiveness of Embrace, a model for integrated elderly care.26 Older adults
aged 75 years and older were included in both studies as the number of health-related problems increases especially after the age of 75.26 The Medical Ethical Committee of the
University Medical Center Groningen assessed the study proposal of the Embrace study and concluded that approval was not required (Reference METc2011.108).
Delphi study
Recruitment of panel members
A broad and representative panel, with three subpanels, was constituted of experts on health and health-related problems due to ageing. Potential panel members were selected based on their presumed expertise in the field of ageing and health-related problems of community-dwelling older adults. The subpanels consisted of older adults, who were included to represent the opinions of the target population and were regarded as experts
2
par excellence; medical experts, who had graduate medical training in the field and were included to evaluate the medical issues experienced by older adults; and non-medical experts, who were included for the evaluation of non-medical health-related problems. Older adults working as volunteers in welfare were recruited through local older citizen’s associations and welfare organizations. Professionals were recruited from health care organizations in various parts of the country.
Potential panel members were invited to participate by e-mail or letter, with information on the goal of the study, methods to be used and estimated time investment, and they were also asked to confirm their expertise. If requested, more detailed information was given by telephone. Attempts were made to obtain 10-15 experts per subpanel. Panel members who agreed to participate received the first questionnaire and additional information on the Embrace study, the goal of the Delphi study and its procedure, and detailed instructions on how to select categories reflecting relevant health-related problems for older adults without the diagnosis of dementia.
Selection of ICF categories
The short version of the ICF, with 265 two-level categories, was used27 because our goal was
to develop a Core Set assessment tool that was easy to administer. Categories included e.g. b144 Memory functions (Body Functions), s110 Structure of brain (Body Structures), d450 Walking (Activities and Participation) and e310 Immediate family (Environmental Factors). No category preselection was made in order to avoid selection bias.
The Delphi study consisted of two rounds, a decision that was based on the guidelines of Hasson et al. (2000)25 and on our experiences with similar studies in which consensus was
reached after two rounds.28
In the first Delphi round, panel members received a list of all second-level ICF categories from the ICF components Body Functions and Structures, Activities and Participation, and Environmental Factors. Panel members had to evaluate each ICF category on its relevance to the majority of non-demented, community-living individuals aged 75 years and older. A category could be considered (very) relevant when older adults experience more often or a more serious impairment in body functions, limitation in activities, restriction in participation, or barrier in the environment, compared to younger adults. Response options included “not relevant” (score 1), “hardly relevant” (score 2), “somewhat relevant”(score 3), “relevant” (score 4), and “very relevant” (score 5). The response option “cannot judge the category”
could be selected if someone was not able to evaluate that category. Categories from the Body Functions and Structures component were only presented to medical experts, as the evaluation of these categories requires specific medical training and knowledge. Categories from the Environmental Factors component were only presented to the two other subpanels, because of their expertise in that particular realm. The first Delphi round led to the selection of categories rated as “very relevant” by the total panel. In addition, categories rated as “very relevant” by the subpanel of older adults – but not by the total panel – were treated preferentially and therefore also selected for the second Delphi round. Finally, categories rated as “relevant” by the total panel were included in the second round set.
In the second Delphi round, the results of the first round were presented to the panel. Panel members were asked to indicate whether they agreed (agree/disagree) with the inclusion of the “very relevant” categories in the “initial Geriatric ICF Core Set”. In addition, ICF categories appraised as “relevant” were included in this second round to test whether they were not incorrectly removed from the set. Panel members were asked to indicate whether they agreed (agree/disagree) with the final exclusion of these “relevant” categories from the initial Core Set. The initial Core Set included categories with sufficient content validity as determined by either the total panel or the subpanel of older adults. The results of the second Delphi round were reported back to the panel members as “the initial Geriatric ICF Core Set”.
For both Delphi rounds, panel members had 2 weeks to respond. A reminder was sent 3 days before each deadline.
Data analysis
Data were analysed using SPSS Statistics version 20.0 (SPSS Inc., Chicago, IL). Descriptive statistics were used to calculate median scores, response frequencies and percentages of panel responses for each category.
After the first Delphi round, categories were included in the second Delphi round as “relevant” when the total panel assessment resulted in a median score of 3.5-4.5 and as “very relevant” if the total panel assessment resulted in a median score that was ≥4.5, or if the subpanel assessment by older adults resulted in a median score of 5.0.
After the second Delphi round, the content validity of each individual category was determined for the total panel and for the subpanel of older adults by calculating the content validity index scores for all “relevant” and “very relevant” categories (I-CVI).29 A “very
2
relevant” category was included in the initial set if the index score for the total panel or for the subpanel of older adults was ≥0.70, calculated as the proportion of panel members who agreed with the inclusion of that category. A “relevant” category was included in the initial set if the index score for the total panel or for the subpanel of older adults was ≥0.70, calculated as the proportion of panel members who disagreed with the exclusion of that category.
Validation study
Sample and baseline measurements
The validation study comprised a subsample of participants of the Embrace study. People aged 75 years and older and registered with one of the participating general practitioners were eligible for inclusion in the Embrace study. In total, 1478 older adults (response rate 49.7%) decided to participate. Those who were identified as frail or having complex care needs and who had been assigned to the intervention group were initially suitable for inclusion in the validation study (n=315). Those participants who completed history-taking with the Geriatric ICF Core Set within six months of the start of the study were also included in the validation study (n=267; 84.8%).
Participants in the Embrace study completed baseline measurements using self-report questionnaires which measured, among other factors, the complexity of care needs (INTERMED for the Elderly, self-assessment, INTERMED-E-SA; scores range from 0 to 60, with a higher score indicating higher levels of complexity of care needs),30 level of frailty
(Groningen Frailty Indicator, GFI; scores range from 0 to 15, with a higher score indicating higher levels of frailty),31 self-rated health status (EQ-5D visual analogue scale, scores range
from 0 to 100, with a higher score indicating better health),32 quality of life (reported scores
range from 0 to 10, with a higher score indicating better quality of life) and the number of chronic conditions (general question). Participants were then stratified into one of three Embrace risk profiles: robust (INTERMED-E-SA <16 and GFI <5), frail (INTERMED-E-SA score <16 and a GFI score ≥5) or complex care needs (INTERMED-E-SA score ≥16). Finally, participants were randomized to the control or the intervention group. A more detailed description of the inclusion and exclusion criteria and the stratification of participants in the Embrace study has been published elsewhere.26
Procedure
During a home visit, which was part of the Embrace procedure,26 participants were
were either district nurses (regarding participants with complex care needs) or social workers (regarding frail participants). Participants had to indicate whether or not they experienced problems in functioning concerning each of the ICF categories in the Body Functions and Activities and Participation components, and whether they experienced lack of support in relation to the categories in the Environmental component. They had to rate all categories on a scale ranging from 1 (no problem) to 10 (complete problem). For the purpose of this validation study, scores were dichotomised to “no problem” (score 0) and “problem” (scores 1-10). The participants assessed all of the categories, so there were no missing values. Additional health and health-related problems as mentioned by the participant were also recorded. These newly identified problems were linked to the best corresponding ICF category by two members of the research team (authors SLWS and KW). After finishing the interviews, case managers evaluated the completeness of the core set by responding to the statement: “Are there any health-related problems not included that should be included in the final set?” If so, this question was followed by the open question: “Which health-related problems would you like to add?”
Data analysis
Data were analysed using SPSS Statistics version 20.0 (SPSS Inc., Chicago, IL). Descriptive statistics were used to present the characteristics of participants and the prevalence rates of health-related problems. ICF categories had sufficient content validity if 10% or more of the participants indicated a problem with that category.17 New categories were included
in the final set if 10% or more of the participants indicated experiencing a health-related problem in that particular category. In addition, if the majority (>50%) of the case managers suggested the inclusion of a specific category, it was also included in the final set.
RESULTS
Delphi study ParticipantsInitially, 83 experts were contacted. We included the first 41 persons who confirmed their expertise and agreed to participate. Experts were evenly divided across the three subpanels, and all experts participated in both Delphi rounds (no loss-to-follow-up). The older adults subpanel (n=16; 39.0%) consisted of six senior volunteers and ten people from an elderly advisory group for professionals. The medical experts (n=16; 39.0%) included six elderly
2
care physicians, three (clinical) geriatricians, two general practitioners specialized in elderly care, and five nurse specialists in elderly care. The non-medical expert panel (n=9; 22.0%) included two district nurses, three social workers and four consultants in the field of elderly care and/or welfare. Each ICF category was assessed by at least sixteen experts.
ICF categories identified
In the first Delphi round, which started with 265 ICF categories, panel members appraised 27 categories as “very relevant” and 124 categories as “relevant” of which four “very relevant” categories were added by the subpanel of older adults (d470 Using transportation; e125 Products and technology for communication; e320 Friends; e570 Social security services, systems and policies).
In the second round, all of the “very relevant” categories were retained, except one excluded by both the total panel and the subpanel of older adults (e125 Products and technology for communication), while two categories were added from the “relevant” categories by the total panel (b240 Sensations associated with hearing and vestibular function; b525 Defecation functions) and two categories were added by the subpanel of older adults (e325 Acquaintances, peers, colleagues, neighbors and community members; e580 Health services, systems and policies).
The initial Geriatric ICF Core Set consisted of 30 categories after the second round: fourteen Body Functions categories (46.7%), ten Activities and Participation categories (33.3%) and six Environmental Factors categories (20.0%). No categories from the Body Structures component were selected. See Table 1 for details on the selection process.
TABLE 1 s Number (and row percentages) of ICF categories per ICF component at start and after each Delphi round ICF Component numbersTotal
Body Functions
and Structures Activities and
Participation Environmental Factors Body
Functions StructuresBody
Initial category sample 79 (29.8) 40 (15.1) 82 (30.9) 64 (24.2) 265 (100.0) Category selection after
Delphi Round 1 43 (28.5) 18 (11.9) 56 (37.1) 34 (22.5) 151 (100.0)
Very relevant 12 0 10 5 27
Relevant 31 18 46 29 124
Category selection after
Delphi Round 2 14 (46.7) 0 (0.0) 10 (33.3) 6 (20.0) 30 (100.0) ICF = International Classification of Functioning, Disability and Health.
Validation study Participants
Descriptive characteristics for the participants at baseline are presented in Table 2. The mean age of the participants was 81.6 years (SD 4.90) and the majority were female (67%). Approximately half of the participants had a low educational level (56%), were living with others (51%) and had complex care needs (57%). The mean number of chronic conditions was 3.3 (range 0-8) and the majority of the participants (77%) were using more than three medications.
Content validity
Table 3 presents the prevalences for all of the ICF categories from the initial Geriatric ICF Core Set. All of the categories met the criterion for content validity (≥10%) except for d530 Toileting (Table 3). Participants mentioned two new health-related problems, but these did not meet the criterion for inclusion in the final set (e340 Personal care providers and personal assistants: n=11, 4.1%; b134 Sleep functions: n=6, 2.2%). Five of nine case managers (55.5%) suggested seven additional health-related problems: e340 Personal care providers and personal assistants (n=2), d920 Recreation and leisure (n=1), d610 Acquiring a place to live (n=1), e1101 Drugs (n=1), b280 Sensation of pain (n=1), b670 Sensations associated with genital and reproductive functions (n = 1) and b134 Sleep functions (n=1), These problems did not meet the criterion for inclusion (prevalence ≤50%).
As a result, the final Geriatric ICF Core Set consisted of 29 categories: fourteen Body Functions categories (48.3%), nine Activities and Participation categories (31.0%) and six Environmental Factors categories (20.7%).
Most disabilities experienced by the participants were related to the Body Functions component (prevalences varied from 32% to 70%), with b710 Mobility of joint functions (70%) as the most prevalent problem, followed by b152 Emotional functions (65%) and b455 Exercise tolerance functions (62%). The Activities and Participation component had two problems with outlying prevalences (d450 Walking, 60% and d410 Changing basic body position, 56%) while the prevalence of problems in the remaining categories varied from 8% to 25%. Regarding the Environmental Factors component, the prevalence of lack of support varied from 14% to 25%.
2
DISCUSSION
This study resulted in the Geriatric ICF Core Set, which includes 29 ICF categories that represent the most relevant health-related problems among community-living older adults without the diagnosis of dementia. The final Core Set includes categories from all ICF components, which supports the notion that older people’s health is a multidimensional construct. This is also in line with other geriatric assessment tools that cover a wide range of domains9,10 and is also in agreement with a recently developed multidimensional model of
health for older adults that covered daily living activities, physical status, emotional health and social engagement.33
TABLE 2 s Background descriptive characteristics of participating older adults (n=267) in the validation study
Variable n (%)
Female gender 178 (66.7)
Age, mean (SD) 81.6 (4.9) Living situation
Community-living with others 122 (45.7) Community-living single 98 (36.7) Residential care with partner 14 (5.2) Residential care single 33 (12.4) Educational level (highest level)
(Less than) primary school or low vocational training 149 (55.8) Secondary school/vocational training 99 (37.1) Higher professional education 7 (2.6)
University 12 (4.5)
Embrace profile
Complex needs profile 151 (56.6) Frail profile 116 (43.4) Number of chronic conditions, mean (SD) 3.3 (1.77) Using more than 3 medications 205 (76.8) Health statusa, mean (SD) 61.3 (16.18)
Quality of lifeb, mean (SD) 6.6 (1.18)
SD = standard deviation.
a EQ-5D visual analogue scale, scores range from 0 to 100, with a higher score indicating better health. b Reported scores, range from 0 to 10, with a higher score indicating better quality of life.
TABLE 3 s Frequency (and percentage) of older adults reporting a problem with an ICF category (n=267) ICF Category n (%) Body Functions b144 Memory functions 111 (41.6) b152 Emotional functions 172 (64.5) b210 Seeing functions 134 (50.2) b230 Hearing functions 125 (46.9) b240 Sensations associated with hearing and vestibular function 158 (59.2) b410 Heart functions 139 (52.1) b420 Blood pressure functions 118 (44.2) b455 Exercise tolerance functions 166 (62.2) b525 Defecation functions 96 (36.0) b530 Weight maintenance functions 84 (31.5) b620 Urination functions 134 (50.2) b710 Mobility of joint functions 187 (70.1) b730 Muscle power functions 134 (50.2) b810 Protective functions of the skin 118 (44.2)
Activities and Participation
d410 Changing basic body position 148 (55.5)
d450 Walking 160 (60.0)
d470 Using transportation 45 (16.9) d510 Washing oneself 53 (19.9) d520 Caring for body parts 39 (14.7)
d530 Toileting 21 (7.9) d540 Dressing 42 (15.8) d550 Eating 36 (13.5) d560 Drinking 54 (20.3) d760 Family relationships 66 (24.8) Environmental Factors
e310 Immediate family 50 (18.8)
e320 Friends 66 (24.8)
e325 Acquaintances, peers colleagues, neighbours and community members 66 (24.8) e570 Social security services, systems and policies 36 (13.5) e575 General social support services, systems and policies 36 (13.5) e580 Health services, systems and policies 48 (18.0) ICF = International Classification of Functioning, Disability and Health.
2
Delphi study
In the Delphi procedure, a high level of consensus among the various panel members was reached on 30 of the 265 ICF categories. In the first Delphi round, only four categories were appraised as more relevant by the subpanel of older adults than by the total panel, of which three remained after the second round. In addition, all of the “very relevant” categories, with the exception of one, remained in the final selection, while four were added from the “relevant” categories. Considering the high level of consensus among the panel members, the professionals demonstrated that they have a good idea of the health-related problems that older adults experience. This also demonstrates the broad support for the initial Geriatric ICF Core Set.
Validation study
The validation study showed that the Core Set had very high content validity, with all ICF categories satisfying the prevalence criterion (>10%) except for d530 Toileting. This category was removed from the final Geriatric ICF Core Set. Results from another study with community-living older people confirms this low percentage of people reporting problems with toilet use (<2.8%).34 None of the additional categories mentioned by participants or
case managers met the criteria for inclusion in the final set. It is likely that these problems were incidental, and thus less relevant to the total population of older people.35
A comparison of our Core Set with ICF categories derived from a linkage study on the EASY-Care Standard and ICF showed a higher percentage of Activities and Participation categories compared to our set (49% vs 31%).21 This is probably due to differences in the method of
development, as the EASY-Care Standard was developed using existing measurement instruments while we used a conceptual approach.34 However, our Geriatric ICF Core Set has
rates similar to the ICF Core Set for geriatric patients in rehabilitation facilities, in relation to problems in the components of Body Functions (41% vs 48% in our study), Activities and Participation (29% vs 31%) and Environmental Factors (23% vs 21%).19 In contrast, only
six categories of our final set correspond with the categories of the brief version of this Rehabilitation Core Set. They concerned five Activities and Participation categories and one Environmental category.36 While the samples seem comparable, with two-third women
(67.0% vs 66.7%, respectively) and mean ages of 80.4 years and 81.6 years, respectively, Grill’s study included patients who lived in a rehabilitation facility, while we included people living in the community. This difference in setting may explain the differences in the categories selected, which would imply that our Core Set better represents the health-related problems of community-living older adults than any other ICF set for older adults.
Strengths and limitations
The main strength of our study is the involvement of older adults in both the Delphi and validation study, increasing the content validity of the set.23 For example, the items that
were appraised as more relevant by the subpanel of older adults in the first Delphi round appeared to be relevant to our population, with a prevalence of 13.5% for e570 Social security services, 16.9% for d470 Using transportation and 24.8% for e320 Friends. In addition, the two “relevant” categories that were included by the older people subpanel after the second round also appeared to be relevant, with a prevalence of 18.0% for e580 Health services, systems and policies and 24.8% for e325 Acquaintances, peers, colleagues, neighbors and community members.
A further strength of the Delphi procedure was that panel members anonymously filled in the questionnaire, which may reduce the effects of social desirability.25 Another strength of
our approach was that we checked whether we had incorrectly removed “relevant” items. This is illustrated by the fact that many older adults experienced problems with the four “relevant” categories that were included in the initial Core Set, with prevalences ranging from 18.0% (e580 Health services, systems and policies) to 59.2% (b240 Sensations associated with hearing and vestibular function). Another design strength was the use of the ICF as the frame of reference. The ICF offers a unified, international language describing the broad concept of health and health-related domains. This enables comparison of results between subgroups and international data13 and may improve content validity.
A potential limitation should also be mentioned. The Core Set was specifically developed for community-living older adults without dementia. However, older adults with dementia or cognitive impairments could have been included in the validation study since dementia was not an exclusion criterion for participation in the Embrace study. Nevertheless, the impact on the results was expected to be trivial as the case managers were experienced interviewers. Moreover, if a participant was suffering from severe cognitive problems, a partner or family member participated in the assessment. Future research should investigate whether older adults with dementia experience different health-related problems from older adults without dementia.
Implications
The focus in this study was on frail older adults and older adults with complex care needs, since they are at risk of experiencing health-related problems. In order to obtain a complete and reliable picture of the prevalence of health-related problems in the entire
