Download Primary Care and Care for the Older Persons - framework

Primary Care and Care for the Older Persons - framework
Introduction
½ - 1 page
In many populations the number of the old people is increasing. For Europe the proportion of
people aged 65 years and older is projected to grow from just under 15% (in 2000) to 23.5%
by 2030, while the proportion of those aged 80 years and over is expected to more than
double (from 3% in 2000 to 6.4% in 2030) (Kinsella and Philips, 2005) However, the pace of
aging in Europe differs considerably between countries. Turkey and Ireland have the lowest
proportion of people over 65 years of age (respectively 6 and 11 %), Germany and Italy have
the highest proportion (approximately 20 %) 1. In all countries these percentages are higher
for females than for males and they are increasing. Partially, that is the result of increasing
longevity : currently, at the age of 65, females have a life expectancy of 15 (Turkey) to 22
(Spain) years. For males these figures are respectively 13 (Slovak Republic and Hungary) and
18 (Switzerland) years.
Because of changing demographics we will undeniably be caring for an increasing number of
older persons in the highest age-groups, with other physiology and pathophysiology. This
provokes a series of challenges that require effective policy and practice.
In many European countries hopes are on Primary Care for the delivery of health services to
the older persons2. While in Europe convergence takes place of role and functions of Primary
Care, the organisation, structure and funding base varies widely between countries. Also,
some countries have developed a strong and coherent Primary Care system whereas others are
less oriented towards the community and more to hospitals. No country however can claim to
have a Primary Care system that is sufficiently robust to adequately address all the challenges
it meets – including the adequate provision of care for the older persons. Primary Care reform
is ongoing in many countries. It is the diversity and reform of Primary Care that makes
international studies and comparison rewarding.
In order to show examples of reform and the benefits of Primary Care and as an inspiration to
policy makers, practitioners and researchers across Europe, this Position Paper provides an
overview of the needs of older people and the responses of Primary Care services. Good
policies and practices as well as innovations are highlighted. This Position Paper does not
claim encyclopaedic completeness, it rather aims to show variety and diversity. Because each
approach is highly dependent on context, the organizational examples often provide little
understanding about the critical factors for success or failure in a specific setting. The
differing contexts in which people work require that solutions be tailored to national
circumstances.
This Position Paper has been developed in 2010 through a Medline search and an expert
consultation process which has been designed by the European Forum for Primary Care 3. It is
one of a series of Position Papers that is being published since 2005.
1
http://stats.oecd.org; data on 2008
Reference to a number of country policies, like UK, Netherlands, France, Slovenia etc
3
See www.euprimarycare.org
2
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Definition of terms
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Primary Care
In this Paper, we make no distinction between Primary Care and Primary Health Care (PHC).
PHC is not a fixed organisational structure or level of care, that can be easily and
unambiguously identified. Instead, it is considered as a combination of essential
characteristics on the basis of the core values of equity, solidarity and social justice, that are
promoted by the PHC movement since more than 30 years:
 Care that is easily accessible – in the community, without financial or physical
(distance) barriers.
 Long term personal relationship and continuity of care – person oriented care and not
disease or organ oriented care. This implies attention for functioning and independent
living of people.
 Comprehensive and quality care, implying evidence based generalist care for all
common health problems. It includes a collaboration with specialist services where
generalist services are insufficient.
 Responsibility for the health of people in their community, which implies attention for
determinants of ill-health and social aspects.
 People are partners in managing their own health.
PHC does not emerge spontaneously, it requires a constant effort and well planned design to
ensure performing PHC. According to the World Health Report of 20084 most countries
would benefit from four major reforms:
1. Universal coverage reforms, to improve health equity;
2. Service delivery reforms, to make health systems people-centred and of high medical
quality.
3. Leadership reforms, to ensure the development of coherent health systems;
4. Public policy reforms, to promote the collaboration between public health and primary
care, addressing the health of communities as well as individuals.
The older persons – beyond the stigma
Ageing is a very individual process, that varies a lot according many factors as genes and life
history.The United Nations decided in 1963 tu use “third age” for people 60-74 and “fourth
age” for people 75 and over. As people are now living longer and in better health in the
developed countries, this definition should be moved to “third age” 70-84, and “fourth age”
85 and more.
Aging can be associated with rising levels of multimorbidity and dependency. Despite the fact
that some authors state that healthy ageing is lagging behind, with older people spending more
and more of their years in ill health,(references) there is some evidence supporting the
“compression of morbidity” thesis (Fries,1983) which suggests that, as populations adopt
healthier lifestyles and therapeutic advances continue, the period of illness that individuals
experience before death is compressed (Parker and Thorslund, 2007, Freedman 2002).Very
frail people aged 80 years and over are major users of informal care and health and social
services (Audit commission 2000, Hellstrom and Hallberg 2001). Yet the older persons are a
heterogeneous group with heterogeneous needs which creates important challenges to
healthcare providers (Byles,2000) and health systems. Our perspective is not that of a doom
scenario, with unlimited populations of inactive, dependent and ill elderly. Aging of our
societies should be considered as progress and as a success and older people can be seen as a
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Primary Care: now more than ever. WHO 2008
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resource to society rather than as a cost. A general remark is here that “age” and “disease” are
two different things. Many times mixed up, what is not correct, and this finding was already
described by Cicero (44BC). You can be very ill in youth and you can be very fit in very old
age. A pessimistic approach to ageing and older patients might lead to unfair access to
services. Decisions about access to treatment and care should be made on the basis of each
individual’s health needs and not their age. For example, even very complex treatments, if
used appropriately, can benefit older people and should never be denied on the basis of age
(NHS national service framework for older people). A pessimistic approach to ageing might
lead to premature admission in hospitals of residential care settings. All older people who
need hospital care should receive it.
BLACK BOX. PATIENT AUTONOMY/PATIENT EMPOWERMENT
Patient autonomy should be central in every approach in care. Patient empowerment
Enable patients to make informed decisions through proper information about care across
different care sectors. Empower patients towards self management. Opportunities Challenges
of providing such support to patients with multiple conditions or those with different ethnic or
socio economic background.
Specific needs of older persons
2-3 page
In the following paragraphs we try to offer a wide view on the needs and challenges to care
for older persons.
Maintenance of good health – prevention – away from pessimism (they are old anyway).
A pessimistic approach to ageing and older patients might lead to impeding the promotion of
health and active life in older age. Health promotion interventions in later life require a
different focus than those at younger ages, with an emphasis on reducing age-associated
morbidity and disability and the effects of cumulative disease co-morbidities. Even a small
reduction of disability may translate into large health care savings and improvements in the
physical, emotional and social health of older persons. According to the UK’s National Health
Service, there is a growing body of evidence to suggest that the modification of risk factors
for disease even late in life can have health benefits for the individual; longer life, increased
of maintained levels of functional ability, disease prevention and an improved sense of well
being. However, a narrative literature review on health promotion measures and interventions
on long term care conducted by M Hasseler indicated a lack of findings on effective health
promotion measurements and interventions for elderly. However, countries invest many
resources in programs and activities for older people, often without knowing if they are
effective and usefull.
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It is important to note the differences in morbidity patterns among various regions
(within and between countries). For example different life styles (caloric intake,
exercise, ...) But at what age to intervene?
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Life long vaccination...
BLACK BOX. LIFE LONG VACCINATION
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-
Prevention of falls is a domain that borders primary care and has gained wide interest
because it has shown to be effective.
BLACK BOX. PREVENTION OF FALLS
Clinical needs
Primary Care meets with a range of health problems of older persons. The likelihood of
developing a potentially disabling condition rises with increasing age and older people often
suffer from multiple chronic diseases with impending disability and loss of independence.
Many chronic diseases have now disappeared: blindness disappeared with the lens-implant,
the hip and knee replacements restore mobility, angina pectoris disappeared with stenting,...
However the prevalence of chronic diseases such as depression, dementia, Parkinson’s
disease, cardiovascular disease, COPD, stroke,... is rising. Some diseases are more or less
typical for older people such as dementia (...% of all cases above age ...), malignancies (6/7
above age 50 and 3/7 above age 70), Parkinson (...% of cases above age ...). Other diseases
tend to start earlier, but prevalences rise sharply with age (diabetes, COPD). Clinical practice
guidelines are being developed to improve quality of health care. Being disease specific in set
up, they overlook the reality of multimorbidity (Boyd CM 2005) (Van Weel and Schellevis
2006).(Marengoni et al) (Anderson 2002). For example obtaining exercise to promote health
in diabetes or COPD may be complicated by pain by osteoartritis or lack of motivation caused
by depression. Theoretically, individuals with multiple conditions face polypharmacia,
fragmentation of care, competing or conflicting guidelines, and inattention to their own
preferences and concerns (Ritchie 2007, Boyd CM 2005). Therefore, in daily practice
guidelines are questioned and modified based on the context of the patient. Comorbid
diseases, patient preferences, functional status, quality of life, life expectancy and
environmental factors will be of influence. It is clear that managing multimorbidity, is much
more than simply the sum of separate guidelines (Van Weel and Schellevis 2006). There is a
need to develop strategies for the inclusion of the clinical and practical aspects of
multimorbidity in clinical practice guidelines. PHC needs it own and adapted tools to take
important clinical decisions.
BLACK BOX. PRIORITY SETTING based on stEP ASSESSMENT (Ulrike Junius Walker)
Multimorbidity is supposed to be associated with poor quality of life, physical disability, high
healthcare utilization and mortality and this association has been proved by Gijsen et al 5.
Moreover the authors described less preventive care, lower intensity of treatment for certain
conditions, less attention to psychiatric comorbidity, greater numbers of hospitalization and
outpatient visits and overall higher healthcare costst. (Gijsen 2001). On the contrary, there are
some findings indicating that the assessment of quality of life if multimorbid elderly is not
necessarily poor. Growing morbidity does not always imply concurrent disability, since
diagnostic and therapeutic strategies have improved (Christensen 2009). Multimorbidity is a
complex phenomenon with an almost endless number of possible disease combinations with
unclear implications. To manage multimorbidity in the future we have to assess the impact of
the problem in detail to be able to focus strategies in clinical management and health care
organization to the patient’s individual needs. To define measures of the quality of care
5
Another ref if needed: Wolff JL, Starfield B, Anderson G. Prevalence, expenditures, and complications of
multiple chronic conditions in the elderly. Archives of Internal Medicine 162(20):2269-76, 2002.
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needed by patients with multimorbidity we should cross the borders of individual diseases.
We need a comprehensive approach, beyond traditional biomedical parameters (outcomes for
single diseases), with the focus on generic outcome measures such as functional status and
quality of life. The eventual purpose is to adapt delivered health care to the individual’s
specific needs and goals. This perspective is in line with the paradigm shift from problem
oriented to goal oriented care (Mold 1991). An important challenge is the variability in needs
of the complex patient. There is need for research on more generic and patient centred
outcome measures. In this very old patients the classical outcome measure of five-years
survival percentage is simply ridiculous, and has to be changed in other outcome measures as
degree of autonomy (related to degree of disability, diminished functionality) and quality of
life. Qualitative research at this point is important. For instance qualitative research on
mobility from the perspective of elderly indicates they have a different meaning of mobility
compared to health professionals. It encompasses eq autonomy, independence and other
factors ) (ref via M hasseler) .
BLACK BOX. DISEASE SPECIFIC GUIDELINES/POLICIES
In France, we have le plan Alzheimer and le plan cancer, two national disease specific
initiatives which encourage the development of services and research on these topics. Some
part of these two plans have been implemented. I can describe it if you want.
Pharmaceutical care
The use of medications in the care for elderly is important for several reasons.
a. It is a complex process (prescription, delivery, intake, adverse effects, patient safety). What
is good for one problem, may be bad for another problem. E.g.cortocoids may be good for
COPD but bad for diabetes. The relevant research on these topics is scarce. An important
problem is that drugs are tested in clinical trials with people with a mean age of 55 years,
while the real patients taking the medicines have a mean age of 80 years...So, in older persons
all physicians are prescribing out of label..., which is a real ethical problem.
b. Causing quite some iatrogenic problems
c. And therefore generating an important cost
A review of the literature showed that there are no good data or results of good research
concerning the strategies to create a ‘seamless care’ concerning drug use in the elderly
(Spinewine & Mallet, 2003; Spinewine et al., 2005; Spinewine et al., 2007; Spinewine, 2006).
Only recently the issue gets more scientific interest but is by far not clear what procedures are
most effective (Gallagher, Ryan, Byrne, Kennedy, & O'mahony, 2008; O'Mahony & et alli,
2010; Lewis, 2005).Medication review is an important multidisciplinary activity (Krska &
Onvolledig, 2001; Lewis, 2005; Spinewine, Dumont, Mallet, & Swine, 2006; Lenaghan,
Holland, & Brooks, 2007; Kaboli, Hoth, McClimon, & Schnipper, 2006).New methods have
to be looked for in order to overcome these problems (Spinewine et al., 2010).
Possibly : BLACK BOX. PHARMACIST AS AN EXPERT IN A MULTIDISCIPLINARY
TEAM APPROACH (Pilootproject COOP apotheken Belgium : pharmaceutical care in
rusthuizen
Functional decline and loss of independence.
Notwithstanding that most older people retain high levels of independence (we find now more
and more very active and completely autonomous persons of 90 and older.) and make
substantial contributions to society, there are clear age related support needs. Australian
figures indicate that while only one in 20 of those aged 65-69 require assistance with self care
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activities, this rises to one in three among those aged 80 years and over. (Australian Institute
of Health and Welfare). Serbic figures out of Belgrade indicate that among those aged over
80, 85,1% reports to need assistance from other persons in various activities of daily living
(Sevo et al. Needs assessment of the oldest old citizens of Belgrade) What and how much
health and social care a person needs is entirely determined by their health, physical,
cognitive and social function. Almost always it is a deterioration in health that leads to a
decline in a person’s abilities. In turn, ability, personality, mental health and the extent to
which a person has friends and family available to help them determines how much and what
sort of formal care services they need (ref). Living with another person often provides much
ongoing volunteer or family support that helps people remain as independent as possible for
as long as possible. However, the burden on the family could be too much. Maintainance of
independence could be at the cost of independence of members of the family. Feminist studies
for instance have shown that women caregivers give up their lives to care for their
dependents. Strong social and community support should add family and volunteer support.
Many older people use community services to help them remain independent. Community
based services are needed to help older adults manage chronic illness while maintaining
independence, remain connected while getting assistance and maximize their self care
abilities. Frail older adults usually have multiple impairments and function best in
environments they know. Since each move to a new setting may cause physical decline and
depression we should guard it unacceptable that patients must give up their independence, to
receive services they need, to remain as active as possible. (Rantz et al, ref 103)
Little is known regarding the proportion of the population at risk for functional decline.
Health indicators based on selected chronic conditions or risk factors are difficult to interpret
because multiple combinations of degenerative diseases result in considerable heterogeneity
in the risk for functional loss and health care needs. Frailty is likely to be a precursor of
disability.
Frailty : beyond the disease specific approach
Frailty provides a conceptual basis for moving away from organ and disease based medical
approaches toward a health based integrative approach. Frailty is a state of increased
vulnerability to adverse outcomes. It is a syndrome that results from a multisystem reduction
in reserve capacity to the extent that a number of physiological systems approach or cross the
threshold of symptomatic clinical failure. The frail older patient has a declining reserve
capacity for dealing with stressors. As frailty leads to recurrent hospitalization (Fried, 2001),
institutionalization (Bandeen Roche 2006) and death (Fried, 2001, Bandeen roche 2006,
Fugate Woods, 2005, Ensrud, 2007; Ensrud 2008; Cawthon 2007), prevention and where
possible treatment of frailty should be high on the medical agenda. Because frailty appears to
be a dynamic and also potentially reversible process, early recognition of frailty and early
interventions should be important issues for family medicine. On the basis of US studies it
appears that frailty affects about 7% of people aged 65 years or older and about 25-40% of
those aged 80 or older (Fried 2001 uit ref 32 PB). A meta-analysis from Santos-Eggiman et al
(2009) estimated that in ten European countries frailty affects about 17 % of patients older
than 65 with higher proportions in Southern than in northern Europe. Although demographic
characteristics did not explain international differences in frailty they found a strong
relationship between education and frailty and an attenuation of country effects after adjusting
for this factor. This illustrates the need of a biopsychosocial approach which integrates
nonmedical factors. Because we are still organ and disease focused both frailty as a syndrome
and the vulnerability that underpins it can be easily overlooked. Frailty does not fit into an
organ- or disease focused understanding of patients because there is almost never a chief
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complaint and the features of frailty occur in combination. Frailty fits the biopsychosocial
model of generalism very well.
However a major impediment to measuring frailty in population based surveys, is the lack of
an operational definition. Fried et al (2001) defined a frailty phenotype in which weakness,
tiredness, poor endurance, weight loss, low levels of activity and slow gait speed were defined
as core elements. (Three or more features indicate frailty, 1 or 2 indicate prefrailty, and none
denotes frailty). Another approachto frailty is the SOF-index (Ensrud KE, Ewing SK, Taylor
BC, Fink HA, Cawthon PM, Stone KL, Hillier TA, Cauley JA, Hochberg MC, radondi N,
tracy JK, Cummings SR ; Comparison of 2 frailty indexes for prediction of falls, disability,
fractures, and death in older women. Arch Int Med 2008; 168(4); 382-389 Ensrud KE, Ewing
SK, Cawthon PM, Fink HA, taylor BC, Cauley JA, Thuy-Tien Dam, Marshall LM, Orwoll
ES, Cummings SR ; A comparison of frailty indexes for the prediction of falls, disability,
fractures and mortality in older men. JAGS; 2009; 57(3); 492-498). This SOF-index defined
frailty by identifying the presence of two or more of the following three components at the
second examination:
1. Weight loss (irrespective of intention to lose weight) of 5% or more between the
baseline and the second examination (mean years between examinations 3,4 ± 0,5),
2. Inability to rise from a chair five times without using the arms,
3. Poor energy as identified by an answer of “no” to the question “Do you feel full of
energy?” on the Geriatric Depression Scale.
A person with none of the above components were considered as robust, and those with one
component were considered to be in an intermediate stage.
Family physicians already use the concept of frailty to aid clinical decision making, assess
risk factors and complications, evaluate interventions and predict outcomes because it is a
better measure than chronological age. However, it has been shown that the concept is not
well enough known in general practice. It is important to stress the clinical importance of
frailty in eg taking important clinical decisions. A lot of research in this field has to be done :
As such there is a need of qualitative studies to describe the meaning of frailty. (Carmen de la
Cuesta)
Geriatric assessment/On the way to generic and patient centered outcome measures
Quality of life and functional status
The goal of chronic care is not to cure but to enhance functional status, minimize distressing
symptoms, prolong life through secondary prevention and enhance quality of life (Grumbach
2003). It is clear that these goals are unlikely to be accomplished by means of the traditional
approach to healthcare that focuses on individual diseases. Despite the need for clear evidence
based strategies and the usefulness of disease management programs for individual chronic
diseases, those interventions always have to be evaluated within and weighed against the
context and needs of the patient.
The concept of Quality of life (QOL) has been defined by the World Health Organization
(WHOQOL Group, 1993).In the draft position paper little is noticed concerning this concept.
However it is important since in society the supposed lack of QOL steers the discussions
concerning important issues. However it has been shown that e.g; in dementia the reduction of
QOL over time is far less explicit than supposed and than the reduction of other determinants
of dementia (Missotten et al., 2008)
Geriatric assessment
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Little is written in the paper concerning the issue of a comprehensive assessment of the
elderly and the procedures and instruments that can be used for it. A biopsychosocial
approach with a focus on patient centered outcome measures is important. In this field it is
important to mention the introduction of the International Classification of Functioning (ICF)
(World Health Organisation, 2001; De Vriendt, Lambert, & Mets, 2009). The value of
instruments like MDS/RAI have to be looked for. More research has to be done concerning
the value of screening instruments.
Quality of healthcare has to be monitored by the right indicators. Quality of health care for the
elderly and patient safety are crucial (World Health Organisation, 2009; World Health
Organisation, 2002b; World Health Organisation, 2002a; 2010). More attention should be
paid to this issue.
BLACK BOX. QUALITY CARE FOR QUALITY AGING: EUROPEAN INDICATORS
FOR HOME HEALTH CARE (Dario Zannon/ based on the document (PB)).
Expertise in Geriatric Medicine
Geriatric Medicine gives now already some answers on these problem. In the training of the
General Practitioners the training in geriatric medicine is many times completely absent or
very short.
Palliative care
Palliative care and care at the end of life are essential elements of care for the older persons.
The WHO extended the definition of palliative care (World Health Organisation, 2004).Little
experience and knowledge exist on palliative issues in geriatric care. Some important issues
are pain, dyspnea, behavioral disturbance, feeding and malnutrition. Dealing with existential
and spiritual concerns is crucial.
Older person’s perspectives
To tailor service development adequately, several perspectives are required. (Parties
concerned are patients, families and social support networks, health care workers, community
services, third party payers, policy makers,...). However every intervention should be firstly
tailored to the needs of the patient, to avoid inadequate care. In recent years, research has
shown that the experiences and perspectives of the older people themselves may not show the
same needs as identified by professionals. Hellstrom and Hallberg (2001) argued that older
people’s perception of the influence of care in their life provides information about the type of
care needed. So, rather than making assumptions, we should listen to what patients want and
need (both in research and practice). Qualitative studies (Themessl-Hiber, Bayliss et al, Potter
at al) defining patients’ perspectives regarding the use of healthcare services defined
following themes. Patients describe ideal care as patient centered and individualized with
convenient access to providers (telephone, internet, in person), clear communication of
individualized care plans, support from a single coordinator of care who could help patients
prioritize the competing demands from their multiple conditions and continuity of
relationships. Overall they express a great appreciation of services limited expectations on
change in health status : One patient said “There’s not much you can do, other than that what
they’re doing”(Themessl-Hiber). Patients especially valued face to face, personalized and
flexible appointments. They valued continuity and want to see healthcare professionals they
know and trust. Having a face to face appointment is important to ensure care is tailored to the
individual (sometimes this will mean a home visit). They valued professionals working
together to ensure that the appropriate package of services comes together. Patients defined
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both personal thresholds and personal opportunities in exploiting optimal care (Potter). Loss
of mobility posed most difficulties both in daily life (people feeling stranded, unable to pursue
daily routines and socialize) and in the utilization of optimal care (a lack of transport can
prevent them from going to a GP surgery)(Potter, Themessl-Hiber, Bayliss). The problem of
underutilization of certain services was especially explained by three tresholds (1) the
services offered did not cater for their needs (2) their own frailties impeded them from
enjoying the activities offered by the services and (3) lack of service flexibility. People want
the timing and kind of care to be tailored and coordinated with their individual circumstances.
People sometimes cancelled services because their timing or remit conflicted with their
routines and habits (Themessl-Hiber).
Patient involvement and empowerment were seen as a great opportunity to optimize care.
Being informed about every stage in the care process was also greatly appreciated. Patients
influence in the decision making process, for example in relation to the activities offered by
services and the discussion leading to hospital admission or subsequent discharge were
greatly appreciated (Themessl-Hiber). Participants felt that they knew their own needs well
and wanted to be heard and acknowledged in their interactions with providers(Bayliss).
Patients describe the care of their conditions as their own daily routine which is modified by
their own perceived needs, physical abilities and sources of support. This routine included
various self management tasks as well as an ongoing process of assessing symptom priorities
and making personal treatment decisions. Although these processes were often time
consuming, most respondents worked hard to maintain outside interests. Several respondents
defined themselves as caregivers to others (usually a spouse) in addition to managing their
own care. All provided detailed prescriptions of the effect that management of their chronic
conditions had on daily activities and their interactions with the health care system.
Participants wanted clinicians to appreciate the fluctuating nature of their medical needs and
to have a caring attitude. Although they may not always need the same intensity of support, it
must be continuous and not intermittent (Bayliss) . They favour an approach that supports and
boosts their capacities, capabilities and social networks and a service that makes them feel
safe while remaining inconspicuous when not needed and that ensures easily accessible help
in emergency situations. Consequently, services like Community Alarms (CA’s) are highly
regarded by older people. They are appreciated for raising confidence about being at home.”
help is at hand at all times” (Themessl-Hiber). The will to retain control in the own home is
prominent in patients’ expectations. The home is generally perceived as being the last area
over which people are to assert control. In this same area elderly report the importance of the
fact that any healthcare worker entering an older person’s home must respect the way they
like things to be done, including the use of their belongings. Another aspiration is the
importance of company and being listened to : older people can feel lonely or isolated.
Contact with health and care workers can offer a much needed form of interaction and
friendly conversation is often welcome. A last aspiration at the community level is the need of
proactive healthcare and support. Older people are often unaware of what is available to them
and may need help and support to understand and access services. Information, advice and
outreach are the bedrock to making this work (Potter). Most of the desired alterations focused
on the process rather than the content of care. This observation is particularly important in
designing future interventions to improve care for this population as current guidelines for
chronic disease care (and associated measures that quantify quality of care) are based almost
exclusively on the content of that care rather than the process. Bayliss et al concluded that the
system desired is a labor intensive proposition for the healthcare system which creates a
tension between the desire to provide such care and the magnitude of both the care needs and
the size of the population. There is a need to develop systems to help us determine which
patients needs what sort of support at which times, there is a major call for investigation into
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the size and characteristics of populations most likely to benefit from more intensive care
coordination.
Family care
The interest in informal caregivers and their efforts concerned with the care and nursing of
older people is because of many factors. The relatives’ effort to help is, according to Svedberg
(2001), important for civilized society’s social capital where trusting relationships are
essential. The ability to help and support others in their nursing needs can be important for the
individual and can be a manifestation of relationships between people. However, it is
important to acknowledge that family care can pose an enormous burden on the caregiver.
Relatives need to be able to help and support their family members in accordance with their
own requirements and conditions : older people often take care of older people and those
caregivers may also suffer from chronic conditions. The increasing responsibility placed on
relatives today can, also be an indication of the increasing gap between the available resources
and the needs of the older people. In Spain immigrant caregivers are increasingly being hired
to care for older people. They are usually employed as domestic workers, reside with the older
individual. They seldom have a contract and work under very questionable conditions : long
hours, no vacation, little salary,…(C. De la Cuesta). In countries with weak systems of social
support, like in Spain, caregivers do not have the possibility to “refuse”. Moreover, cultural
issues militate against it : the family (meaning women : spouses and daughters) is expected to
care for the relative.
This problem is also illustrated by information out of Serbia. Despite the fact that this country
has one of the largest older populations (17.2% of its citizens in 2007 aged over 65 compared
to 21.7% under 20) they only provide limited accommodation to old people not competent of
independent living. Family holds a predominant role in providing social support and care for
their older members. Caregivers are usually spouses or children. This is not only because of a
traditional role of family in Serbia but it also illustrates an inadequate level of community care
available, mainly due to inadequate financial and other resources. Serbia faces a great
challenge in aged care reform which should include the promotion of concepts that would
replace, or at least ease the burden of the traditional family. (Sevo et al. Aging in Serbia-via
M Sulovic). Recently there have been some attempts to train so called geronto-house-aid-staff
(professionals providing home assistance and personal care, that is non-health-care releated
aspects of community care for the elderly)
Caregiver burden/ more resources of informal care : neighbours, self help groups,…
In every specific context we have to take the important influence of the relationship between
formal services and family caregivers into account. Several studies show that professional
caregivers can find the relatives demanding. Moreover, the relationship between the relatives
and the caregivers is seldom conflict-free which means that conflicts can arise in nursing
situations. Relatives can be an undervalued resource for the older people from the
professional perspective.A seminal study by Twigg et al (opzoeken, evtl via C de la Cuesta)
highlighted that family caregivers are usually considered as resources.
Nolan et al pointed out that there is no partnership model of collaboration between nurses and
caregivers. There are no strategies or concept for co-operation between formal and family
care. However, according to several studies, relatives seek improved information and better
communication with the staff. A study of Haggstrom et al (ref 135) showed that relatives of
patients in special housing facilities find it important to trust caregivers (at the level of
competence, accommodation and time for the patient). The relatives’ feelings regarding their
participation in the care emerged. In the light of cut downs in resources they feel a heavy
10
responsibility for the older people but they refuse to take over more care than they themselves
want to. They felt that the present trend in society seems to expect more responsibility from
family members. The relatives need more support and new opportunities in their participation
in care.
ORGANISATIONAL NEEDS
Tackle fragmentation/ Patient centred coordination
One of the main challenges in the care for older persons is the fragmentation of care. Older
patients deal with acute care, chronic disease, rehabilitation, prevention, social and end of life
situations where different providers work in different settings, sometimes within differing
payment systems. Coordination and integration of care is essential to provide holistic and
comprehensive care adapted to the needs of the complex patient. A fundamental problem is
the lack of common definitions of underlying concepts. Integration and coordination have
been pursued in many ways in different health systems and there is a plethora of
terminologies (“integrated care” “coordinated care” collaborative care” “managed care”
“disease management” “person centred care”). This confusion very much reflects the
polymorphous nature of a concept that is applied from several disciplinary and professional
perspectives and is associated with diverse objectives.(Caring for people with chronic
conditions, a health system perspective). In this light we believe that every health system
should evaluate and design its services and policies with the patient at the centre. Every
attempt for coordination/integration that is not patient centered will lead to greater
fragmentation.
Person centered care needs to be supported by services that are organized to meet needs.
Organizational structures should act to impede the provision of care coordinated around the
needs of the older person with respect to their individuality, dignity and privacy. Service
system failings can undermine older people’s confidence and their ability to remain
independent. (NHS national service framework for older people). A proper assessment of the
range and complexity of older people’s needs and prompt provision of care can improve and
prolong people’s independence, reduce the need for emergency hospital admission and
decrease the need for premature admission to a residential care setting. Integrated services for
older people aimed at promoting good health and quality of life and to prevent or delay frailty
and disability can have significant benefits for the individual and the society. ( NHS NSF
older people); Health services should ensure an integrated approach to service provision
regardless of professional and organizational boundaries (integrated care). This might include
the introduction of a single assessment process in health and social care to ensure that older
people’s needs are assessed and evaluated fully.
BLACK BOX. SINGLE POINT OF ACCESS - ITALY
A model rooted in primary care
Primary care is best placed to provide integrated, coordinated care for complex patients with
changing needs. Where they are well developed, the community orientation and
multidisciplinary teams in Primary Care constitute a link with social services and a resource
for prevention and support, early recognition and management of disease. In order to provide
better support for the patients there is a pressing need to bridge the boundaries between
professions, providers and institutions trough the development of more integrated and
11
coordinated approaches to service delivery. In this was new models of service delivery are
designed to achieve better coordination of services across the continuum of care. New policies
and service delivery models should be rooted in primary care.
Coordination and integration of care : a complex task, who has to do it?
Continuity and coordination of care are particularly important for older patients as they are
apt to have multiple medical problems treated by several clinicians. The central medical
professional for the care and management of multiple chronic diseases is the GP. This is
related to his broad expertise but also to the usually longstanding relationship with older
patients. Several studies demonstrated associations between physician-patient continuity and
satisfaction, reduced utilization, increased efficiency and better preventive care (ref 6, en 7 uit
114). A structured literature review by Saultz et al that evaluated 22 studies including 4
cinical trials found that “interpersonal continuity” was related to higher satisfaction, lower
utilization and generally higher care quality (ref 8 uit 114) although one study found
interpersonal continuity to be associated with higher pharmacy and referral costs. (Hjortdal,
1991-ref 10 uit 114). The task of coordinating care is both clinical as administrative. Despite
its undeniable importance, it is often performed in between visits, so, in fee-for-service
payment systems it is not compensated for GP’s. Lack of physician time and lack of payment
are 2 likely explanations for suboptimal or inadequate coordination of care. Continuity of care
is often equated with having a primary care physician. However, the coordinating care
function for primary care physicians may become so burdensome that it will interfere with
actually taking care of patients (Volpintesta Edward ref 87) .
Continuity and coordination of care have several components including a longitudinal
relationship with a single identifiable provider and cooperation between providers and
between venues of care. (Meijer, ref 3 uit ref 114) Coordination involves the “availability of
information about prior problems and services and the recognition of that information as it
bears on the needs for current care” (Barbara Starfield, ref 4 uit ref 114).
Nonphysicians such as case managers or multidimensional interventions sometimes provide
continuity and coordination. Most interventions reduce utilization, however the multiple
dimensions of those interventions are uneasy to distangle and are often not tested outside
research settings.(Ref 114-identification of quality indicators, RAND method, not including
patient factors or costs, based on literature review and expert opinions-eventueel deze lijst
mee te nemen in de PP?)
Coordination and integration of multiple disease management programs
The availability of disease-specific clinical guidelines, seems to lead to the implementation of
disease management programs that should improve quality of care for individual chronic
diseases. However, this strategy is not always comprehensively integrated in the existing
healthcare system and requires an increasing amount of additional resources. Moreover, for
the individual with multimorbidity the disease management programs increase the complexity
and load of care and often lack an integration of their specific needs and comorbid conditions.
To use future health care resources in the most efficient way we need a clear assessment of
the clinical needs of patients with multimorbidity. Developing measures of the quality of care
needed by patients with multimorbidity is critical to improving their care (Boyd CM 2005).
Coordination and integration of hospital care and home care
A new range of acute and rehabilitation services is necessary to bridge the gap between acute
hospital and primary and community care. The aim of those services should be to promote
12
faster recovery from illnesses, promote timely discharge, maximize rehabilitation
opportunities and independent living. (NHS national service framework for older people).
BLACK BOX. BELGIAN CARE PROGRAM FOR GERIATRIC PATIENTS
A good example could be here the “Belgian Care program for Geriatric Patients”, where
trough Geriatric Day Hospitals and an External Liaison in each hospital in Belgium a
maximum of knowledge is transferred to the GP and his team and continuity is warranted.
Coordination and integration of information
Most definitions of “coordination of care” focus on information exchange among providers to
ensure they all act toward a common goal. Information technology (IT) represents a
promising avenue for improving healthcare delivery and health outcomes, particularly in
geriatrics and in chronic disease care6. There are numerous different IT that have been
developed and implemented for older person’s care: electronic health records, decision
support systems, telecare, web-based package for patients/ family caregivers, assistive
technology etc7. IT will not be able to automatically resolve all problems in the health care
industry, there is still ample room for the art of medicine. Nevertheless, IT are promising in
supporting primary care process, informational continuity, patient centered care and patient
empowerment. Yet, despite the expected benefits for implementing IT, there is evidence of
numerous accounts of IT implementation failures and low adoption rates8. Many barriers may
impede the implementation and use of IT in elderly care. For example, there is a risk of alert
fatigue (Information overload)9 particularly when using an EMR for older patients who
present several co-morbid conditions and medications.
B.2.2 Formal care
The necessary shift from hospital care to community care and primary care for the ageing
population has changed both the content and process of care and has increased expectations.
Home care is of growing importance. In a study of Carlisle et al (UK-1997), it was reported
that GP’s could consider changes in community care as a problem because their workload
increased as a result. A more recent study (Modin et al, Sweden, 2009) investigated the
position of the GP in a primary care model where district nurses provide home care for old
persons with a mixture of chronic disease, symptoms and functional disability. This study was
conducted after the observation that those patients were less often seen by GP’s than other
patients of comparable age (modin, 2002). By the mean of qualitative interviewing the study
identified the main concern of GP’s which is to stay in charge of medical treatment. The
problematic of the patients followed by DNs was complex and knowing how to handle this
6
Weiner M, Callahan CM, Tierney WM, Overhage JM, Mamlin B, Dexter PR et al.: Using Information
Technology to Improve the Health Care of Older Adults. Annals of Internal Medicine 139(5 II)()(pp 430436), 2003 Date of Publication: 02 Sep 2003 2003, 430-436.
7
Vedel I, Akhlaghpour S*, Lapointe L. Information Technology In Geriatrics: A Typology in support of IT
diffusion. Canadian Journal of Geriatrics 2009, 12(1):49
8
Casalino L, Gillies RR, Shortell SM, Schmittdiel JA, Bodenheimer T, Robinson JC et al.: External incentives,
information technology, and organized processes to improve health care quality for patients with chronic
diseases. JAMA 289(4):434-41, 2003, -29.
9
Kuperman GJ, Gibson RF: Computer physician order entry: benefits, costs, and issues.[see comment]. Annals
of Internal Medicine 2003, 139: 31-39.
Saleem JJ, Patterson ES, Militello L, Render ML, Orshansky G, Asch SM: Exploring barriers and facilitators to
the use of computerized clinical reminders. Journal of the American Medical Informatics Association 2005, 12:
438-447.
Bollen C, Warren J, Whenan G: Introduction of electronic prescribing in an aged care facility. Australian Family
Physician 2005, 34: 283-287.
13
was difficult. In addition, the patient’s personal ability to cooperate, decide and adhere was
often decreased. In much of this the GP had to rely on others. Despite the fact that close
collaboration with other healthcare workers is not always uncomplicated the GP’s in this
study expressed feeling satisfied with the collaboration with DNs. In complex patients GP’s
have to be ready to continuously change the goal of the treatment. The GP’s basis for
evaluation and diagnosis was to a large extent dependent on the information of the DN and
other home care providers. Despite the fact that the “managed care model with DMs” is
context specific and therefore not easily extrapolated to other contexts, these results point the
need to focus on the process of collaboration in home care between the GP and other care
providers. The above results explore the situation from the GP’s point of view. As there are
many actors involved it would be of interest to explore it from the view of the patient.
BLACK BOX. COPA
In France, a model of integrated services – COPA (Coordination of Professional Care for the
Elderly)– has been developed based on scientific evidence and an original design process in
which health professionals, including GPs, and managers participated actively (Vedel 2009
Implementation Science10).
COPA targets older persons with functional and/or cognitive impairment who are recruited
through their GP. It was designed to provide a better fit between the services provided and the
needs of the elderly in order to reduce excess healthcare use, including unnecessary
emergency room (ER) visits and hospitalizations, and prevent inappropriate long-term nursing
home placements. The model’s originality (Vedel 2009 Ageing clinical and experimental research11) lies in:
1) having reinforced the role played by the PCP, which includes patient recruitment and care
plan development; 2) having integrated health professionals into a multidisciplinary primary
care team that includes case managers who collaborate closely with the PCP to perform a
geriatric assessment (InterRAI MDS-HC) and implement care management programs; and
3) having integrated primary medical care and specialized care by introducing geriatricians
into the community who intervene upon a GP request. These geriatricians visit patients in
their homes and organize direct hospitalizations while maintaining the PCP responsibility for
medical decisions.
A study using a multimethod research design – a quasi-experimental study and a qualitative
longitudinal study - (DeStampa, grey literature, not published yet12) has shown: 1/ the model
has been adopted by GPs due to its compatibility with GPs norms, values and work process
and its benefits for patients; and 2/ the model has improved health parameters, care processes
and has decreased hospital use.
Response by Primary Care
8-10 pages
In welke landen bestaat er een ouderenzorg beleid en wat is aandeel PHC daarin vraag voor
experts
10
Vedel I, De Stampa M, Bergman H, Ankri J, Cassou B, Blanchard F, Lapointe L. Health care professionals
and managers’ participation in developing an intervention: A pre-intervention study in the elderly care context.
Implementation science 2009, 4:21
11
Vedel I, De Stampa M, Bergman H, Ankri J, Cassou B, Mauriat C, Blanchard F, Bagaragaza E, Lapointe L. A
Novel Model of Integrated Care for the Elderly. Aging Clinical and Experimental Research 2009; 21(6):414423.
12
De Stampa M, Vedel I. Impact de la coordination sur l’état de santé, les pratiques professionnelles et le recours
aux services pour les personnes âgées dépendantes à domicile. Rapport de recherche pour la Haute Autorité de
Santé et la Caisse Nationale de Solidarité pour l’Autonomie. June 2010
14
Transportation, local services and residential adaptation are addressed. Also in health, a wide
array of policies and interventions has been developed, ranging from support to informal
carers to geriatric assessments that pick up early signs and symptoms of cognitive or
functional limitations. The role of home care, IT and domestic appliances and devices has
gained importance – albeit there is a wide variation in their use.
We describe a number of approaches and services that have become mainstream. Further, we
describe a series of new initiatives that may serve as inspiration.
Need for monitoring and assessments of health of the elderly – description of instruments that
are used to monitor and assess – description of practices in different countries and results Need to support living independently - domestic appliances, home care, family care, housing;
Discussion on the role of primary care in this – examples from several countries in which
primary care does play a role.
Interventions to relieve the burden of care critically reviewed (suggested by C de la Cuesta –
could she provide some examples?)
Serbia (Sevo et al. Aging in Serbia). In primary health care every GP is entitled to 1693 adult
patients. 71% of older Serbic people reports to regularly visit their GP which is despite the
fact that a significant number of them requires assistance to visit the GP. There is only one
institute providing home treatment and community care for older persons which is running in
Belgrade.
De tekst in dit blok is afkomstig van Ian Philp uit Sheffield, die we gaan benaderen als
een van de experts:
The segmentation which I would propose is one which we used to develop national
policy for older people in England and was endorsed by the Prime Minister, Tony
Blair, at the time (personal communication).
The three groups are: frail, at-risk and the general population of older people.
The age cut-off for the general population of older people is debated. I would
use 60 plus as I believe this is the one used by the UN. At-risk and frail
older people are skewed to the older end within this general population.
For each segment one can explore a differentiated service response, by sector,
assessment methods, and key conditions.
Sector:
The acute hospital and long-term care sectors are focussed on the care of frail older people.
valt niet binnen scope van paper? Pauline: referenties over ontslag management
The primary care sector should do much more to identify and respond to health and care
needs and prevention opportunities in the at-risk group.
A multi-sectoral approach is needed to maximise health and well-being in the general
population of older people, through the promotion of exercise, good diet and social networks.
15
Assessment methods:
The evidence base is strong about the benefits of comprehensive geriatric assessment for frail
older people. CGA utilises multidisciplinary specialist expertise.
Older people at-risk of loss of independence, health and well-being (because of the emergence
of multiple age related health conditions) comprise about 50% of the 75 plus population, and
are therefore too numerous for all to receive CGA, even in countries like the UK, Italy and the
Netherlands where there are well-developed multidisciplinary geriatric services.
Nevertheless, holistic assessment is required, and can be delivered by a front-line
professionals such as a community nurses as a basis for planning care and identifying those
who need CGA. The Dutch EASY-care trail provides good evidence of the cost-effectiveness
of this approach, using the EASY-care instruments which we developed in the 1990's in the
SCOPE project, involving Hanneli, Giovanni and myself.
In the general population, postal survey methods using validated brief screening tools, can be
used to identify the at-risk groups, who would benefit from holistic assessment.
Specific Conditions:
For each of the specific conditions mentioned in the background document, and
others, it can be helpful to segment by the three population groups. Niet teveel op
ziektespecieke zaken ingaan – dementia + diabetes wel, verder vooral korte case descriptions
For example, in falls, there needs to be :
-a multi-sector strategy for increasing weight-bearing exercise in the general population of
older people.
-a primary care response, including attention to vision, medicines, environment, exercise and
bone health, to identify opportunities to reduce falls and fracture risk in the one in four people
aged 65 plus who fall each year.
-referral to a multi-disciplinary falls and bone health service for those at greatest risk, such as
those with a emergency hospital admission with a fall, a fall-related fragility fracture, or those
with frequent falls.
If colleagues agree with this segmentation approach, our position paper could describe the
rationale for a differentiated approach by sector, the evidence-base for the levels of
assessment required for each segment and suggestions for appropriate responses for key
conditions, with particular emphasis on the primary care role for each.
How do primary care teams to adapt to provision of care to the elderly – team composition /
relationship with geriatrics and other specialised services?
This is directly related to the diseases mentioned above ánd to multimorbidity
16
For example (1) how do primary care providers ensure compliance with multiple medicines
prescriptions – link with pharmacy / home care / informal care / as part of primary care? (2)
role and position of the geriatrician – in or outside primary care? (3)
Palliative care – in how far embedded in primary care – description of % of palliative care
provided by GP’s and other primary care providers – in how far is this a specialised service.
(input from UK and Slovenia is particularly interesting).
International developments in self directed care. (ref 1-alakeson et al uit search PB). The
program allows beneficiaries to manage their own budgets and choose services that met their
care needs. Such developments have been observed in England, Germany and the Netherlands
as a way of increasing patient centred care. Self directed care should allow consumers to
meet specific individual needs and preferences to remain independent and in their own homes.
Early results are promising however ... Cave : most vulnerable groups (need for a counselling
service),; cave ; transfering a greater proportion of risk for unexpected health care needs to
individuals. Cave : non-evidence-based care. Cave : privatisering
Vita Lesauskaite et al. Challenges and opportunities of health care for the aging community in
lithanua. Gerontology,2006:52:40-44
Jones H et al. A Slovenian model of integrated care for older people can offer solutions for
NHS services. Nursing times;105:49-50.
Obstacles to providing primary care for the elderly. 2-3 pages
Funding often is an obstacle to ensure well coordinated and integrated care. Current
healthcare systems are largely built on an acute episodic model of care which is ill equipped
to meet the long term and fluctuating needs of older people with complex chronic health
problems. The mismatch between the needs of the population for proactive, integrated and
preventive care for chronic conditions and a healthcare system where the balance of resources
is aimed at specialized episodic care for acute conditions might be one of the reasons of the
current rise in hospital admissions (Scottisch Executive, 2005).
In France, a qualitative study was carried out from 2004 to 2006 using a grounded theory
approach and involving a purposeful sample of 56 healthcare professionals and managers in
order to systematically gather data on the current practices, issues, and expectations of
healthcare professionals and managers with regard to elderly care13.
The results have identified many issues:
1/ Inadequate needs assessment process within primary care
The needs assessment process is not centered on common geriatric syndromes, but rather on
acute medical problems. Needs assessment performed by various health care professionals
(GPs, nurses, social workers, etc.) are not shared.
2/ Inadequate coordination of primary care services
No one is responsible for coordinating services. GPs often tried to play this role, but they did
not have enough time and sufficient knowledge of existing services. Moreover, fee-for-service
remuneration of GPs and some other healthcare professionals is seen as one of the barriers to
coordination, since the time they spent coordinating tasks was not compensated.
13
Vedel I, De Stampa M, Bergman H, Ankri J, Cassou B, Blanchard F, Lapointe L. Health care professionals
and managers’ participation in developing an intervention: A pre-intervention study in the elderly care context.
Implementation science 2009, 4:21
17
3/ Inadequate coordination of primary and secondary care
Inadequate coordination between primary and secondary care led to poor continuity of care.
Hospital-based professionals have poor knowledge of community-based services. The
pressure to transfer patients quickly leads to poor discharge planning. GPs and geriatricians
work in silo.
4/ Perceived consequences for patients and families
The overall needs of older persons are not being recognized or met in a timely manner,
leading to ‘crisis’ situations. Consequently, while GPs know that an emergency room visit is
an adverse experience for older patients, they still use it inappropriately (e.g., falls,
overextended families) because it was the only way for them to gain access to a geriatric
assessment. Moreover, transitions between settings were performed with insufficient
exchange of information between clinicians. Poor coordination of care was therefore
generating a vicious circle of emergency room visits and hospitalizations. Finally, families
were left too often with a significant burden.
What policies do European countries have to strengthen or support
primary care for older persons?
2 -3 pages
Overview of the countries that developed a general elderly care health policy and the place of
primary care in that policy (Pim can do this chapter)
In how far do these policies address the obstacles mentioned above?
What priorities for primary care do these policies mention?
In many cases structural or funding issues contribute to the lack of cohesion and integration in
the service system. Often a range of programs funded by different levels of government have
been created. This often results in confusion for providers, referrers and clients, poor
integration between services with difficulty in assessing information and navigating the
system. However different levels of funding also have a positive side as it creates diversity of
services and models of delivery and can enhance quality and availability for consumers as
well as providing multiple funding sources for providers. The greatest challenge is to stretch
limited resources through better integration, coordination and communication. (Anne Marie
Fabri ref 77)
Integration, coordination and communication – bevoorrechte rol voor primary care?
Needs for research and further developments
2 pages
On perception by older person themselves?
Strengthening country policies?
How to successfully implement new models of older peron’s care in primary care?
While improving and reorganizing older person’s care in modern health systems has become a
priority in order to cope with the specific challenges of meeting the needs of older persons,
the gap between conceptual models of care and existing provider practice remains wide.
Implementations of innovative elderly care models is challenging. For example, despite strong
evidence of the efficacy of integrated services in optimizing resource utilization and health
and satisfaction levels among older persons, it has been difficult to diffuse and sustain these
18
programs, in large part because of difficulties encountered securing the participation of
healthcare professionals and, in particular, GPs14.
Develop research on multimorbidity in primary care.
This kind of research is rare as shown in a review by Fortin et al 200515
Develop transitional programs and research
Models have been developed in silo either within primary care (eg. CCM, patient-centered
medical home) or within hospitals (eg, elder friendly hospitals). Although these models are
essential, the question remains: how to improve the transitions of older patients between
primary and secondary care? There are a few research on this topic (see Naylor16). These
research have been conducted in USA. I do not think there is any of this kind of research in
Europe (?)
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