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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 1 Definition of terms ½ - 1 page 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 4 Primary Care: now more than ever. WHO 2008 2 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. - 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? - Life long vaccination... BLACK BOX. LIFE LONG VACCINATION 3 - 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. 4 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 5 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 6 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 7 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 8 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 9 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 (?) REFERENCES Improving Patient Safety in Europe (IPSE). (2010). Ref Type: Internet Communication Bartholomeeusen, S., Truyers, C., & Buntinx, F. (2010). Ziekten in de huisartspraktijk in Vlaanderen (1994-2008). Leuven/ Den Haag: Acco. de Jonge, P., Huyse, F. J., Slaets, J. P., Herzog, T., Lobo, A., Lyons, J. S. et al. (2001). Care complexity in the general hospital: results from a European study. 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