Chronic Disease Management. Disease Management Programmes and Self-Management Support

Transcription

1 Chroic Disease Maagemet A Natioal Strategy Disease Maagemet Programmes ad Self-Maagemet Support 2007

2 Table of cotets The Natioal Board of Health Sudhedsstyrelse 67, Islads Brygge DK-2300 Copehage S sst@sst.dk Desig: 1508 A/S Key words: Chroic disease, disease maagemet, self-maagemet Laguage: Eglish Versio 1,0. 1. Editio Versio date: ISBN Electroic versio: ISBN Prited versio: Copyright: The Natioal Board of Health. Demark 1 Itroductio 5 2 A Geeric Model for Disease Maagemet Programmes Defiig the group of patiets Care Self-maagemet support Orgaisig the care Distributio of tasks Coordiatio ad cooperatio Quality moitorig Implemetatio of disease maagemet programmes Evaluatio ad revisio of disease maagemet programmes 25 3 Disease maagemet programme for diabetes Patiet group Early detectio Diagosis ad cotact registratio Guidelies Guidelie requiremets Support for self-maagemet Orgaisig the programme Graded care Coordiatio ad cooperatio Evaluatio ad revisio of disease maagemet programmes 40 This publicatio summarizes three reports i Daish. Chroic Disease Maagemet Chroic Disease Maagemet

3 1 Itroductio A report called Chroic Coditios. Patiet, Health Care ad Commuity was published by the Natioal Board of Health i The purpose of this report was to describe the optios ad assumptios for a improved respose to chroic diseases. Due to the emergece of icreasigly efficiet ad costly treatmet optios, a ageig populatio ad the esuig icrease i the umber of people affected by chroic diseases ad problems recogised i the care of chroic coditios it is ecessary to idetify the optios for better care i coectio with chroic coditios. Durig the aalysis of the problems related to chroic coditios ad the idetificatio of possible solutios, the Chroic Care Model 2 has prove to offer a appropriate framework. The model combies the kowledge available o the value of the idividual elemets i a multifactor programme. Chroic diseases have oe or more of the followig characteristics: they are permaet, leave residual disability, are caused by o-reversible pathological alteratio, require special traiig of the patiet for rehabilitatio, or may be expected to require a log period of supervisio, observatio or care 3. This defiitio icludes both somatic ad metal disorders. Chroic Coditios. Patiet, Health Care ad Commuity describes a umber of problems cocerig the commitmet of society ad the health service to citizes with chroic diseases. As a result of these problems the course of the disease ofte deteriorates ad complicatios occur, which results i the eed for hospitalisatio ad resource-itesive treatmet. By appropriate orgaisatio of the effort ad by cosistet utilisatio of evidece-based guidelies it is possible to ifluece the course of the disease so that part of such health services is ot required. The report poits out that patiets optios of actively maagig their health coditio ad maitaiig a life i their ow home should be especially emphasised. Cosequetly, a overall strategy describig orgaisatioal, professioal ad icetive assumptios for a efficiet respose to chroic diseases should focus i particular o stregtheig patiets self-care ad o the primary health-care sector. Thus, the Natioal Board of Health s recommedatios focus o the orgaisatio ad provisio of health care ad the optios of stregtheed ad supported self-maagemet. Disease maagemet programmes tailored to Daish health care ad a actio pla for better supported self-maagemet, self-moitorig ad self-treatmet are the tools described i reports i Daish. This publicatio summarises those reports. Chroic Disease Maagemet Chroic Disease Maagemet

4 2 A Geeric Model for Disease Maagemet Programmes 1 The coclusios ad recommedatios of this report have bee published i Eglish Dictioary of Health Services Maagemet, 2d ed. The purpose of a geeric model for disease maagemet programmes is to provide a overall framework for the cotet of such programmes adapted to the orgaisatioal coditios of the Daish health service. The geeric model describes the combied iterdiscipliary, itersectorial ad coordiated effort for a specific chroic coditio. It esures the use of evidece-based recommedatios, a precise descriptio of the distributio of tasks ad the coordiatio ad commuicatio betwee all the parties ivolved. It is importat to esure that the effort for patiets with chroic diseases is orgaised appropriately at both the patiet level ad the orgaisatioal level. The goal is to esure cosistece betwee differet efforts, to esure that the health professioals ad the patiets ivolved have a uiform, commo objective, that the staff already have or are acquirig the ecessary qualificatios, ad to esure that each care elemet gives the cliically best achievable results. May studies have show a geerally positive effect of disease maagemet programmes for chroic diseases 4. I geeral, patiet satisfactio, patiet compliace ad cotrol of the diseases have improved. To a lesser extet they show more effective utilisatio of resources. Disease maagemet programmes ca be orgaised i differet ways usig differet itervetios 5. The disease maagemet programme aims for a high-quality care ad patiet safety as well as appropriate utilisatio of resources throughout the programme. The purpose is a systematic ad proactive effort prevetig progressio of the disease, acute episodes ad complicatios with built-i, ogoig moitorig of the quality of the programme. The aim is to develop atioal disease maagemet programmes, but local detailig/specificatio is ecessary i coectio with the actual orgaisatio ad distributio of tasks ad the implemetatio of the disease maagemet programme. The followig elemets are part of the geeric model that may form the framework of the developmet of specific atioal programmes: 4 Ofma JJ, Badamgarav E, Heig JM, Kight K, Gao AD, Jr, Leva RK, et al.: Does disease maagemet improve cliical ad ecoomic outcomes i patiets with chroic diseases? A systematic review. Am.J.Med Aug 1;117(3): Weigarte SR, Heig JM, Badamgarav E, Kight K, Hasselblad V, Gao A, Jr, et al. Itervetios used i disease maagemet programmes for patiets with chroic illess - which oes work? Meta-aalysis of published reports. BMJ 2002 Oct 26;325(7370):925. Chroic Disease Maagemet Chroic Disease Maagemet

5 2.1 Defiig the group of patiets The patiet group of the disease maagemet programme must be defied, ad the patiets idetified ad registered. This implies: Idetifyig the diagosis that cause a perso to be comprised by the programme. Describig how to register the diagosis ad how to collect ad use the registratio. To diagose persos with chroic diseases as early as possible i the course of the disease. To register the diagoses of everyoe diagosed with the disease i questio whether by a doctor i the primary health care sector or the hospital sector. To register all the patiet s cotacts with GPs, the muicipal health service ad the specialised health service cocerig the relevat chroic disease. The disease maagemet programme should specify: 1. The diagoses causig a perso to be comprised by the disease maagemet programme. 2. The disease classificatio to be applied whe registerig diagoses. 3. How ad where to register diagoses, who is resposible for the registratio ad how to collect ad use data. 2.2 Care The relevat treatmet for the disease cocered should be described i evidecebased cliical guidelies. This implies: Drawig up care recommedatios for the chroic disease cocered. Describig relevat care based o cliical guidelies, icludig diagostics ad early detectio, treatmet, rehabilitatio, follow-up ad support for self-care. To esure the use of evidece-based care recommedatios for patiets with a chroic disease. The disease maagemet programme implies that the effort of the GPs, the muicipal health service ad the specialised health service should follow evidece-based cliical guidelies ad provide guidelies for a. diagostics, icludig early detectio b. assessmet of sequelae ad comorbidity c. treatmet ad rehabilitatio d. self-maagemet support e. follow-up cosiderig the degree of severity of the disease ad the eed for regular cotrol 2.3 Self-maagemet support The disease maagemet programme should cotai a descriptio of the cotributio of a active correlatio betwee the health service ad patiets to the mobilisatio ad stregtheig of patiets self-care. The cetral elemets are: Self-moitorig ad selftreatmet may be importat elemets of patiets self-care. This optio should be used systematically. Patiet educatio may qualify patiets for a active approach to chroic coditios, their cosequeces ad treatmet. Targeted programmes for frail ad vulerablepatiet ad populatio bases that are uable to actively assume resposibility. Appropriate medicatio ad treatmet istructios. Electroic patiet records ad cliical iformatio systems as shared tools for patiets ad therapists. To help patiets to perform self-maagemet that is crucial for the course ad cosequeces of the disease. To eable idividual patiets to mobilise their resources optimally, the health service must actively support this. Patiets with chroic diseases must arrage for their ow everyday Chroic Disease Maagemet Chroic Disease Maagemet

6 treatmet ad follow the medicatio itake pla ad coditios such as diet, physical activity, smokig, etc. I the case of some diseases it is possible for patiets themselves to moitor symptoms or measurable parameters of importace for the course ad treatmet of the disease. I these circumstaces, some patiets are able to make adjustmets to both pharmacological ad o-pharmacological treatmets themselves Active self-moitorig ad self-treatmet Self-moitorig meas the patiet s ow measurig of disease parameters. They may iclude biological parameters measured usig devices operated by the patiets themselves or registratio of symptoms or fuctioal level. Self-treatmet implies that based o this moitorig patiets make idepedet or istructed decisios about their treatmet. The past decades have see a techological developmet of measurig equipmet that patiets use for self-moitorig of objectively measurable parameters associated with the treatmet of the disease i questio. This icludes equipmet to measure blood glucose, blood pressure, respiratio capacity ad blood coagulatio as well as electroic weights, etc. I additio to a geeral uderstadig of the chagig patiet role, this developmet has resulted i some use of self-moitorig ad patiet-maaged medicatio itake based o the patiet s ow measurig results. I the case of some diseases, selfmoitorig ad patiet-maaged medicatio itake have gaied geeral acceptace as beig ecessary ad valuable. This applies first of all to type 1 diabetes, where the patiet s ow frequet blood glucose measuremets are regarded as a ecessary basis for the cotiuous adjustmet of blood glucose cotrol 6. A similar approach leadig to improved quality of life ad improved treatmet is techically possible i coectio with a umber of other coditios. This possibility is oly utilised to a limited extet. It would be advisable to speed up the developmet towards active cooperatio betwee patiets ad the health service, which would also lead to improved treatmet quality ad utilisatio of resources. Literature o objective self-moitorig usig well-defied measurig equipmet i coectio with log-term aticoagulat therapy, asthma, type 2 diabetes ad cardiac isufficiecy has bee systematically reviewed (Natioal Board of Health 2006). It cofirms that i coectio with those coditios there is evidece that beefits ca be obtaied i the form of improved disease status ad disease cotrol, reduced use of health services, improved emotioal well-beig ad improved self-maagemet. As regards all four aalysed coditios there is relatively substatial evidece that self-moitorig ad self-treatmet lead to improved treatmet results. Especially for log-term aticoagulat therapy there is good documetary evidece of the effect ad of the appropriate orgaisatio of the effort. A survey of the use of self-moitorig ad self-treatmet i Daish hospitals showed cosiderable variatios, as selfmoitorig is oly used to a limited ad varyig extet i coectio with diabetes, asthma, heart isufficiecy ad aticoagulat therapy. Istructio i self-treatmet also varies cosiderably 7. Thus, there is great potetial for improvemet through formalised iitiatives that would cotribute to icreased dissemiatio of selfmoitorig ad self-maagemet of medicatio. Cocer regardig issues of resposibility ad cocer that self-moitorig ad self-maagemet of medicatio may lead to icreased medicalisatio, as well as scepticism as to patiets ability to hadle their treatmet may be cotributory reasos why this cocept is ot more widespread Aticoagulat therapy Self-treatmet i coectio with log-term aticoagulat therapy (medical treatmet reducig the risk of thrombosis by decreasig blood coagulability) is a well-documeted example of self-treatmet. The effect of self-treatmet ad how it may be orgaised has bee documeted. Iteratioal Self-Moitorig Associatio for Oral Aticoagulatio (ISMAA) has draw up a set of self-treatmet priciples that ca be applied to other diseases 8. They establish the followig precoditios for recommedig self-moitorig ad self-treatmet: The treatmet results should be as good as or better tha for covetioal treatmet. The quality of life should be affected favourably. Self-treatmet should be cost-effective. It should be possible to idetify the patiets who are capable of self-treatmet. 6 Daema D: Type 1 diabetes. Lacet 2006; 367: Patiete med kroisk sygdom. Sudhedsstyrelse Asell J, Jacobso A, Levy J, Völler H, Hasemkam JM: Guidelies for implemetatio of patiet self-testig ad patiet self-maagemet of oral aticoagulatio. Iteratioal cocesus guidelies prepared by Iteratioal Self-Moitorig Associatio for Oral Aticoagulatio. It.J.Cardiology 2005;99: Chroic Disease Maagemet Chroic Disease Maagemet 11

7 The techology (measurig devices) should be reliable. Guidelies should be established for educatio of both patiets ad the health professioals that are to educate patiets i self-treatmet. Cotiuous moitorig ad quality surveillace of the activity should be established. There is cosesus i ISMAA that a cosiderable proportio of patiets who eed log-term aticoagulatio therapy will be capable of self-treatmet whe they have completed a structured educatio programme. The techology available eables patiets to reliably measure the treatmet effect ad to adjust their medicatio dosage accordigly. The aalytical measurig devices are user-friedly ad reliable. As patiets are able to take measuremets more frequetly tha i coectio with covetioal treatmets, treatmet complicatios such as bleedig or thrombosis are sigificatly reduced. It is estimated that the treatmet is more cost-effective tha covetioal treatmet ad icreases the quality of life cosiderably by makig patiets idepedet of frequet cotacts with the health service. Selectio for self-treatmet is made o the basis of a subjective assessmet of the patiet s medicie moitorig ad dosage capacity. It would be desirable, however, to qualify the selectio of patiets for self-treatmet o the basis of objective criteria Geeralisatio i terms of other diseases There is evidece that a large group of patiets are capable of self-treatmet of their disease ad that this improves their quality of life. Based o the results of self-maaged aticoagulat therapy ad practical experiece from self-moitorig of blood glucose i cases of type 1 diabetes, systematic use of the self-moitorig optio i coectio with chroic diseases is recommeded wherever possible. There is evidece of the value of this approach i coectio with diseases such as asthma, heart isufficiecy ad type 1 ad 2 diabetes, etc. Stroger focus o this is likely to ispire research that may lead to similar results i coectio with other diseases. The developmet of tele-medicie will ope possibilities for ew ways to orgaise ad support self-treatmet. For example, electroic reportig of self-moitorig results to a GP or other health-care provider will ope possibilities for the provisio of idividual or automated istructio o the Iteret usig computer software Quality assurace The implemetatio of self-treatmet should iclude cotiuous quality assurace with suitable idicators ad moitorig of the implemetatio rate. For both blood glucose ad blood coagulability measuremets, patiets ca take their ow measuremets with a certaity ad accuracy that is close to or as good as what is achieved i laboratory measuremets. Thus, patiet measuremets ca be part of the cotiuous moitorig i additio to laboratory measuremets. This assumes that the programme icludes a descriptio of the cotiuous quality assurace of devices ad treatmet results Ecoomy Self-moitorig ad self-treatmet presuppose orgaisatioal adjustmets, traiig of staff, purchasig of devices, etc., ad thereby resources. No specific health-ecoomic aalyses of self-moitorig ad self-treatmet are available. However, there is substatial evidece of improved quality of life, e.g. i coectio with diabetes ad aticoagulat therapy. This leads to a reduced complicatio rate ad a delay or prevetio of late complicatios i coectio with the disease. There are good idicatios that self-maaged aticoagulat therapy is cost-effective as it sigificatly reduces the eed for hospitalisatio due to cerebral haemorrhage or thrombosis. A similar effect is to be expected for diabetes ad other diseases Liability Ucertaity about liability issues may be oe of the reasos for the slow dissemiatio of self-treatmet. However, uder Daish law the same liability applies i this coectio as i other situatios of patiet medicatio self-maagemet where the prescribig doctor is also resposible for the treatmet. The doctor is resposible for idicatio, cotraidicatios ad assessmet of the risk of adverse evets ad iteractio with other medicie. The doctor must esure that the patiet who is to self-maage the treatmet, has bee istructed i the plaig of the treatmet, ad that agreemets are made about the ecessary cotrols to avoid complicatios i coectio with the medicie i questio. It must be assessed ad checked whether the patiet is able to use the relevat devices/measurig equipmet ad to hadle self-moitorig ad selftreatmet, icludig durig the future course whe further developmet of the disease or icreasig age may ifluece the patiet s self-treatmet capacity. I those circumstaces, the patiet must give his/her iformed coset to treatmet with the drugs prescribed, icludig to self-moitorig ad self-treatmet. 12 Chroic Disease Maagemet Chroic Disease Maagemet 13

8 If these precoditios are met, the doctor is ot resposible if the patiet acts agaist the istructios provided, or for the patiet s self-moitorig or self-cotrol Coclusio There is great potetial for improvig self-maagemet for some of the chroic diseases by utilisig self-moitorig ad self-treatmet. However, ot all patiets will beefit from this approach as a severe impact o the state of health or the lack of physical or metal capacity ad kowledge of the disease may be obstructive factors. Patiets who are able to make use of it will profit cosiderably by a better quality of treatmet ad life. At the same time resources will be made available that ca be used to improve measures for patiets who are icapable of selftreatmet. Systematic utilisatio of the optios of self-treatmet for more diseases would require orgaisatioal adjustmets ad a redistributio of resources. Cosequetly, it would imply a political/admiistrative decisio ad deliberate maagemet measures. I retur, we expect improved quality of treatmet, better overall utilisatio of resources ad modified ad improved iteractio betwee patiets i active self-treatmet ad the health service Patiet educatio Patiet educatio icludes structured courses. This implies a orgaisatioal framework, the use of effective ad suitable educatioal methods ad ogoig evaluatio of the effect of the educatio. A overall patiet educatio programme will iclude elemets of both geeral ad disease-specific educatio. To stregthe patiets ability to live with their disease ad providig appropriate self-maagemet. Plaig of disease-specific patiet educatio is aimed at patiets with a specific chroic disease with a view to patiets acquirig kowledge about the specific disease, its treatmet ad the effect of prevetio ad rehabilitatio. The educatio may also iclude self-moitorig ad self-treatmet. Plaig of geeral patiet educatio for patiets with chroic diseases across diagoses with a view to patiets acquirig qualificatios to hadle/master the problems of livig with a chroic disease, regardless of diagosis. The Staford chroic disease self-maagemet programme has bee pilot tested i Demark with a positive result ad thereafter widely implemeted i health care uder a atioal licese Frail ad vulerable patiets Developmet of programmes for particularly vulerable patiet ad populatio groups to support their selfcare capacity is required, icludig: patiets who, due to severe illess, several cocurret diseases requirig treatmet, disabilities, etc. ad possibly a weak persoal etwork, are highly depedet o health-care ad/or social services; patiets who, due to weak persoal resources ad a poor or differet uderstadig of their disease, social or cultural circumstaces, are icapable of proper behaviour ad self-care. To reduce health disparities ad iappropriate use of resources through a itesified ad targeted effort for groups ad idividuals with particular eeds. These vulerable groups ca be idetified i differet ways. For example, patiets at high risk of recurrig acute hospitalisatio ca be idetified through register data, ad it is also possible to idetify groups ad geographical areas with a particular risk profile. I some of the particularly vulerable patiets there may, based o a idividual assessmet, be a idicatio for the establishmet of a special support fuctio i the form of a case maager for a period or cotiuously. 2.4 Orgaisig the care Overall care orgaisatio should be established. This implies: Defiig care pathway resposibility ad describig the distributio of tasks. Layig dow stratificatio criteria i order to plaig a graded care. To esure appropriate orgaisatio of the overall effort for patiets with chroic diseases. 14 Chroic Disease Maagemet Chroic Disease Maagemet 15

9 The health service should be orgaised to meet the particular eeds for a coordiated, cotiuous iterdiscipliary effort. It is recommeded that first priority i the effort for patiets with chroic diseases should be give to geeral practice ad the muicipal 2.5 Distributio of tasks health service while esurig iteractio ad coordiatio with the specialised level. The patiet s health status ad idividual eeds should always determie the level of specific measures. The disease maagemet programme should determie ad describe the distributio of resposibilities ad tasks based o the followig priciples: 1. It should be doe based o the qualificatios ad techologies required to perform the specific tasks at a professioally qualified level. 2. Patiet participatio i moitorig, treatmet ad rehabilitatio should be icorporated throughout the programme. 3. The programme should take ito accout cosideratios of orgaisatio ad resources. 4. Natioal recommedatios for the locatio of treatmet should be followed. To esure patiets with a chroic disease high-quality care adapted to their eeds ad guarateeig effective utilisatio of resources. This implies relevat treatmet, a staff with the ecessary professioal qualificatios ad appropriate orgaisatio ad coordiatio across professioal groups ad sectors. The Daish Health Act determies the regioal ad muicipal resposibility i the health-care area. However, there is cosiderable scope for variatio withi the framework of the Act i terms of the actual orgaisatio of the effort Stratificatio Stratificatio is a tool that ca be used to allocate groups of patiets for the treatmet, rehabilitatio ad follow-up from which they derive most beefit ad which esure appropriate utilisatio of resources. To esure that patiets are treated at the right health service level ad that the treatmet meets their eeds throughout the course of the disease. A patiet populatio with a specific chroic disease is ofte described by way of a stratificatio pyramid where patiets are divided ito groups accordig to the severity of the disease ad the eed for actio (Figure 1). The stratificatio pyramid ca be used as a tool to pla ad dimesio the care for a specific chroic disease. I the Daish health service with easy access to geeral practice, stratificatio is already commo i coectio with the GP s role as a gatekeeper for the specialised health service. GPs make referrals to the specialised health service if more itesive ad/or specialised measures are eeded, but explicit criteria for this oly exist i exceptioal cases. O the other had, disease maagemet programme stratificatio cotais explicit criteria across sectors ad professioal groups Stratificatio criteria The programme should establish stratificatio criteria with a view to plaig a graded effort. The criteria should have progostic sigificace ad determie the care patiets eed. Selectio of stratificatio criteria should take ito accout the risk of complicatios ad the patiet s overall state, icludig the itesity ad complexity of the disease, co-morbidity ad the patiet s self-maagemet capacity. Furthermore, the criteria should, to the widest possible extet, be based o evidece, ad existig atioal criteria should be icluded i the stratificatio Practical applicatio of stratificatio We have limited experiece with the applicatio of stratificatio i Demark. Hece, the disease maagemet programme recommedatios for the 16 Chroic Disease Maagemet Chroic Disease Maagemet 17

10 practical applicatio of stratificatio should be see as part of a developmet process requirig testig, gaiig ad icorporatig practical experiece of usig this tool. Persos allocated to a disease maagemet programme o the basis of diagosis registratio should be stratified at the most appropriate level of treatmet, rehabilitatio ad follow-up. This implies a assessmet o the basis of the specified stratificatio criteria with the outcome determiig the level of specialisatio ad the most appropriate itesity of treatmet for the patiet cocered. Patiets should be ivolved i the specific cosideratios o which the stratificatio level decisio is based. To facilitate the actual orgaisatio of care, the disease maagemet programme should cotai overall guidelies determiig the players who will be resposible for the care at differet stratificatio levels. The followig priciples should be applied whe determiig this: For patiets with a well-maaged or ewly diagosed chroic disease without sigificat complicatios, treatmet should be hadled by GPs ad the muicipal health service. For patiets with a chroic disease that is poorly maaged/difficult to maage ad/or with complicatios, treatmet should be hadled joitly by GPs, the muicipal health service ad the specialised health service (the hospital service ad/or medical specialists). For patiets with a complex chroic disease, the greater part of treatmet should be hadled by the specialised health service (the hospital service ad/or medical specialists). Rehabilitatio ad self-maagemet support should be hadled i cooperatio with GPs ad the muicipal health service. The priciple is outlied i Figure 1: Stratificatio Pyramid Patiets with complex chrioic desease (s) Petiets with chroic deseases that are poorly maaged/difficult to maage ad/or with complicatios Petiets with well-maaged or ewly diagosed chroic diseases without sigificat complicatios The disease maagemet programme should describe how to register idividual patiet stratificatio ad how to collect ad apply stratificatio data.the stratificatio resposibility lies maily with the GP who has the pricipal cotact with the patiet, ad i priciple the stratificatio ca take place i both geeral practice ad the hospital service. As far as possible, there should be cosesus amog the players ivolved about the stratificatio. Stratificatio is a dyamic rather tha a fial tool as the state of the Care provider Hospital service/medical specialists Geeral practice Muicipal health service Hospital service/medical specialists Geeral practice Muicipal health service Hospital service/medical specialists Geeral practice Muicipal health Service patiet may improve, stabilise or deteriorate. 2.6 Coordiatio ad cooperatio It is proposed that the tasks ad resposibility of all the players ivolved to esure a coheret ad coordiated effort should be described i health agreemets betwee regios ad muicipalities. Natioal legislatio determies the framework of such agreemets the pur- 18 Chroic Disease Maagemet Chroic Disease Maagemet 19

11 pose of which is to remove ay doubt about the distributio of resposibility for the provisio of specific services or the cooperatio ad coordiatio betwee the players. As regards the hadlig of special fuctios such as the coordiatio of disease maagemet programmes at the regioal level it is importat for the agreemet to specify ad describe the associated tasks ad resposibilities. The health agreemets should also describe how to esure coheret care regardless of the umber of cotacts, players or the ature of the effort eeded. Coherece with the social authorities should also be icluded i the agreemet Coordiators It is recommeded that all patiets with a chroic disease should have a coordiator who is resposible for: coordiatig the overall care evaluatig the patiet s health o a ogoig basis esurig systematic follow-up ad proactivity adherig to treatmet targets To esure ad adhere to a systematic, coordiatig ad proactive effort. The coordiator is assumed to be familiar with each patiet, to be available ad to have i-depth kowledge of the health service ad other relevat players. I geeral, this fuctio should be hadled i geeral practice. Some patiets oly have sporadic cotacts with geeral practice for periods of time durig the course of their disease. Durig these periods it is particularly importat that the GP should be iformed o a ogoig basis i accordace with the agreemets of the parties o the exchage of iformatio. For example, this may apply to a patiet with a chroic disease whose treatmet is primarily hadled at the specialised level. Durig such periods the resposibility for regular evaluatio of the patiet s health, systematic follow-up ad progressive, proactive measures as well as support for adherece to targets i relatio to the chroic disease aturally lies with the specialised outpatiets cliic. Aother case i poit is a patiet with a well-maaged chroic disease whose treatmet is hadled by the muicipal health service for periods of time. Here, part of the systematic follow-up ad support for adherece to targets i relatio to the chroic disease would aturally lie with the muicipal health service Case maager Some patiets eed support i additio to the support of the coordiator, relatives or other players ivolved i the care pathway. Icreased support for the completio of ad adherece to treatmet ad rehabilitatio by attachig a case maager is recommeded. To esure itesified, customised support for patiets with severe ad complex eeds. The offer of itesified support from a case maager is give o the basis of a idividual assessmet whe the patiet eeds icreased support for complex coditios i coectio with treatmet, rehabilitatio, selfmaagemet ad social issues, etc. It is importat that patiets with such eeds are idetified ad that the support is targeted ad customised with a view to improvig the treatmet ad quality of life of each patiet while keepig resource cosumptio at a appropriate level. The disease maagemet programme should specify: 1. Criteria for referral for case maagemet 2. How to esure that relevat patiets are offered supplemetary itesified support through a case maager. Case maagemet should be iitiated by the coordiator or accordig to agreemet with the team resposible for treatmet of the patiet with the chroic disease i questio. 20 Chroic Disease Maagemet Chroic Disease Maagemet 21

12 Tasks performed by a case maager i cooperatio with the patiet ad relatives, as required, based o the patiet s eeds Cotributig to the coordiated, iterdiscipliary, itersectorial effort across diseases, icludig both acute ad stable phases of the disease. Supportig the patiet s completio of ad adherece to treatmet ad rehabilitatio. Supportig the patiet s optios of self-maagemet. Esurig follow-up ad adjustmet of iitiatives. Actively commuicatig with relevat parts of the health service whe the patiet is goig to or has switched betwee sectors or differet health-care providers. Example of criteria for referral to case maagemet The complexity of the disease ad/or several cocurret chroic diseases requirig treatmet makes it difficult to complete ad adhere to treatmet. The patiet has bee idetified as particularly vulerable ad eeds support for the self-maagemet optios, e.g. because of the patiet s poor self-maagemet capacity due to weak persoal ad social resources or iadequate uderstadig of his/her disease. Case maagers ca be attached to the hospital service, geeral practice or the muicipal health service. Specific experiece i appropriate plaig of course coordiatio for particular groups of patiets i Demark is required. To moitor the disease maagemet programme from a patiet, cliical ad orgaisatioal perspective. I case of diseases icluded i the Daish Quality Model accreditatio programme, the existig stadards ad idicators should be applied. I case of diseases that are ot icluded, moitorig should be performed accordig to a template correspodig to the Daish Quality Model template so that it ca be adapted cocurretly with the developmet of the quality model. The disease maagemet programme should specify: 1. the stadards ad associated idicators of the quality of the programme to be moitored as a miimum 2. how to register, collect, aalyse ad commuicate data 3. the perso(s) resposible for the moitorig. 2.8 Implemetatio of disease maagemet programmes A implemetatio pla should be icluded i the disease maagemet programme. This implies: specificatio of the perso(s) resposible for the implemetatio process a implemetatio schedule specificatio of the plaed implemetatio measures ad tools. 2.7 Quality moitorig Stadards ad idicators for moitorig the quality ad effect of the programme should be established, ad moitorig should be performed across the staff groups, istitutios ad sectors of the health service. To support the uiform implemetatio of disease maagemet programmes. The implemetatio of disease maagemet programmes implies careful plaig of treatmet ad orgaisatio based o iterdiscipliary teams wherever possible. Cooperatio i idividual orgaisatios ad betwee sectors is importat for the quality of the overall effort. 22 Chroic Disease Maagemet Chroic Disease Maagemet 23

13 I additio, the implemetatio should be supported by both fiacial ad o-fiacial icetives such as staff participatio, ogoig evaluatio ad the use of iteral ad exteral reportig of quality data, icludig patiet satisfactio, ad active patiet participatio i programme recommedatios.the Chroic Care Model describes a series of best practices statig methods ad actios that ecourage the implemetatio of cliical kow-how embedded i the disease maagemet programme. Thus, the model illustrates some practical approaches ad tools to support the implemetatio of disease maagemet programmes. Active maagemet ivolvemet ad commitmet as well as the availability of the ecessary professioal ad ecoomic resources are importat factors. I the developmet ad implemetatio phase it is ecessary to assess the eed for extra resources for local adaptatio of the disease maagemet programme, traiig of staff ad developmet of IT systems Coordiatio of disease maagemet programmes at the regioal level A implemetatio pla should be icluded i the disease maagemet programme. This implies: specificatio of the perso(s) resposible for the implemetatio process a implemetatio schedule specificatio of the plaed implemetatio measures ad tools. To form the basis of the decisios of the regio ad muicipalities cocerig disease maagemet programmes. The regioal coordiator should moitor the implemetatio, developmet ad follow-up o disease maagemet programmes i the regio ad muicipalities ad esure cooperatio with the relevat health-care authorities of the regio ad muicipalities. As the basis for this work, the regioal coordiator must have access to populatio data, the existece of risk factors, the occurrece of specific chroic diseases, the patter of health service cosumptio, fiacial data ad ay existig atioal disease maagemet programmes. 2.9 Evaluatio ad revisio of disease maagemet programmes A pla for the evaluatio ad follow-up o the cotet of disease maagemet programmes ad for updatig, evaluatio ad revisio should be draw up. It should specify who is resposible for evaluatio ad follow-up. To esure ogoig evaluatio, updatig ad revisio of disease maagemet programmes. Implemetig a disease maagemet programme for a specific chroic disease would provide ew experiece cocerig icreased patiet participatio, the use of stratificatio tools ad chagig the orgaisatio of treatmet. I step with the cotiuous developmet of medical techology this experiece should be collected ad used to develop ad update disease maagemet programmes o a ogoig basis. 24 Chroic Disease Maagemet Chroic Disease Maagemet 25

14 3 Disease maagemet programme for diabetes I step with the developmet of the geeric model adapted to the particular coditios of the Daish health service the priciples thereof have bee applied to develop a disease maagemet programme for diabetes. The purpose is to achieve a systematic ad proactive high quality care prevetig progressio of the disease, acute episodes ad complicatios with built-i, ogoig moitorig of the quality of the programme. A large umber of atioal, regioal ad local cooperatio iitiatives have already bee lauched i the diabetes area, icludig: a atioal actio pla from 2003 a atioal steerig group a atioal quality database Diabetes is part of the systematic quality developmet i geeral practice, i the Natioal Idicator Project ad i the Daish Quality Model. Thus, the biggest challege i the developmet of the disease maagemet programme ad its subsequet implemetatio is to esure that these iitiatives are coected i a specific orgaisatio. Cosequetly, the goal is to esure coherece betwee idividual elemets of the programme, to esure that health professioals ad the patiet ivolved adhere to a commo objective throughout the programme ad that each elemet of a idividual programme yields the best achievable results. The diabetes programme should be see as the first versio of a atioal disease maagemet programme for diabetes ad the first example of a disease-specific atioal disease maagemet programme based o the geeric model. The diabetes programme is based o the followig compoets: a) Defiitio of the group of patiets b) Determiatio ad descriptio of treatmet c) Orgaisatio of the care d) Quality moitorig e) Implemetatio pla f) Evaluatio ad follow-up The specific orgaisatio, the cotet of health agreemets betwee regios ad muicipalities ad the pla for the regioal/local effort should take place i the regio cocered. 3.1 Patiet group The programme icludes all adults, childre ad pregat persos diagosed with type 1 or type 2 diabetes. To esure a systematic effort ad moitorig of the effort, the diagoses of everyoe diagosed with diabetes should be registered. The goal is for doctors ad other relevat professioal groups i both the primary sector ad the hospital sector to register all cotacts cocerig diabetes, ad to register the diagoses of all persos with diabetes. 3.2 Early detectio The programme comprises oly persos who have bee diagosed with diabetes. However, early detectio, particularly of persos with type 2 diabetes, is a importat elemet of a itesified effort i the diabetes area. It is estimated that close to 200,000 Daes have type 2 diabetes without kowig it, ad that early half the patiets recetly diagosed with diabetes already have oe or more late complicatios. Persos of other ethic backgrouds are a particular challege due to a very high icidece of type 2 diabetes i this populatio base. It is recommeded that guidelies o early detectio of persos with diabetes should be itegrated i the relevat guidelies for diagosig, treatmet ad rehabilitatio of diabetes. A memoradum cocerig detectio ad diagosig type 2 diabetes was prepared by a iterdiscipliary, itersectorial workig group i It cotais the followig recommedatios: 1. Recommedatios for cliical case-fidig with a descriptio of the cliical symptoms that should trigger type 2 diabetes testig i both geeral practice ad the rest of the health service. 2. Recommedatios of whe tests for udetected type 2 diabetes should be a madatory, itegral part of the examiatio programme for patiets with other diseases, e.g. ischaemic heart disease. 3. Recommedatios for itesified detectio amog high-risk idividuals. 3.3 Diagosis ad cotact registratio All persos with diabetes should be registered whether they are diagosed by GPs, medical specialists or i the hospital sector. All cotacts with GPs, the muicipal health service ad the specialised health service cocerig the perso s diabetes should be registered Diagosis ad cotact registratio i the hospital service The followig ICD-10 diagosis codes 9 are used i coectio with diagosis ad cotact registratio i the hospital service: 26 Chroic Disease Maagemet Chroic Disease Maagemet 27

15 E10.0 E10.9: Diabetes, isuli-depedet E11.0 E11.9: Diabetes, o-isuli-depedet E13.0 E13.9: Diabetes, other type E14.0 E14.9: Uspecified diabetes Data from diagosis ad cotact registratio i the hospital service are collected i the Daish Natioal Patiet Registry Diagosis ad cotact registratio i geeral practice Geeral practice registratio applies the exteded Daish ICPC code system 10 code T90: Diabetes/diabetes mellitus. Data from diagosis ad cotact registratio i geeral practice are collected i the Daish Geeral Practice Database (Dask Almemedicisk Database) Diagosis ad cotact registratio i the muicipal health service Extesio of the existig system for diagosis ad cotact registratio i muicipalities is recommeded to allow it to support systematic registratio ad collectio of data i the muicipal health service. 3.4 Guidelies A large umber of local/regioal cliical guidelies are available for measures cocerig persos with diabetes. Amog the purposes for the disease maagemet programme for diabetes is to cotribute to a more uiform treatmet of patiets with diabetes based o commo updated, evidece-based cliical guidelies. The followig atioal or atiowide cliical guidelies for diabetes have bee published after the year Natiowide Daish cliical guidelies I 2003, the Daish Cetre for Evaluatio ad Health Techology Assessmet uder the Natioal Board of Health published a report o type 2 diabetes, health techology assessmet of screeig, diagostics ad treatmet ( Type 2-diabetes. Medicisk tekologivurderig af screeig, diagostik og behadlig ). I 2004, a iterdiscipliary workig group uder the Natioal Diabetes Steerig Group prepared a report o good care pathways ad late complicatios ( Det gode patietforløb samt sekomplikatioer ) cocerig type 2 diabetes patiets. The report cotais both cliical decisio support, 9 ICD10: Iteratioal Classificatio of Disease 10th editio (WHO) 10 Exteded Daish ICPC: Iteratioal Classificatio of Primary Care (covertible ito ICD10 code). For more iformatio, go to proposals cocerig icreased late complicatio screeig measures ad proposals for orgaisatioal chages. I 2004, DSAM, the Daish College of Geeral Practitioers, published cliical, evidece-based guidelies o type 2 diabetes i geeral practice ( Type 2-diabetes i alme praksis E evidesbaseret vejledig ). This was followed by patiet guidelies for type 2 diabetes prepared i a collaboratio betwee DSAM ad the Daish Diabetes Associatio. The Daish Edocrie Society ad the Daish Society of Nephrology together prepared a report o good care pathways for patiets with diabetic ephropathy ( Det gode patietforløb for patieter med diabetisk efropati ) I 2005, The Daish Society of Diabetes Nurses (Fagligt selskab for Diabetessygeplejersker) uder the Daish Nurses Orgaizatio updated its cliical isuli ijectio guidelies for adults with diabetes mellitus ( Kliiske retigsliier for ijektio af isuli til vokse med diabetes mellitus ) i The Daish Associatio of Cliical Dieticias (Foreige af Kliiske Diætister) has prepared atioal evidece-based framework plas for dietetic treatmet of type 1 ad type 2 diabetes. It has ot bee possible to idetify specific Daish atiowide cliical diabetes guidelies for other relevat professioal groups (cardiologists, ophthalmologists, chiropodists, physiotherapists). I additio to the above guidelies for health professioals, a umber of patiet guidelies have bee published by the Daish Diabetes Associatio, amog others. The most recet atiowide cliical guidelies for type 1 diabetes were published by the Natioal Board of Health i The Daish atioal guidelies idetified above were prepared by iterdiscipliary workig groups or with the participatio of differet professioal groups, but they are ot itersectorial, ad they do ot describe measures across geeral practice, the muicipal health service ad the specialised health service. A umber of iteratioal guidelie orgaisatios ad professioal societies prepare cliical guidelies i the diabetes area, which are used as iput to the cliical effort i Demark. It is assessed that there is a eed for atiowide iterdiscipliary, itersectorial cliical guidelies for diabetes i the followig areas: 28 Chroic Disease Maagemet Chroic Disease Maagemet 29

16 Heart diseases Treatmet of foot ulcers Type 1 diabetes Patiet educatio Support ad advice o lifestyle ad behavioural chages Metal co-morbidity Metal masterig, icludig support for vulerable patiets. 3.5 Guidelie requiremets Newly diagosed patiets Patiets diagosed with diabetes should all be screeed for complicatios. The severity of the disease should be assessed ad a follow-up pla should be prepared. The iitial stratificatio should take place at a competet level. At the time of diagosis, a structured patiet educatio programme should be plaed to iform the patiet ad eable him/her to make coscious choices. A structured patiet educatio programme may iclude the followig themes, amog others: the ature of the disease, how to live with diabetes, diet, physical activity, smokig, metabolic regulatio, medical treatmet of hyperglycaemia, itercurret diseases, chiropody, diabetic late complicatios, pregacy, social circumstaces ad travel. Relatives may be ivolved i the patiet educatio. Idividual assessmets should be made i the iitial phase to determie whether referral of the patiet to a ophthalmologist or idividual dietetic treatmet, support for a chage of lifestyle, ad self-maagemet, physical exercise ad chiropody is required. O completig the iitial phase, the patiet should switch to regular follow-up based o plaed ad aual visits to the doctor Regular follow-up Idividually agreed regular visits ad a comprehesive aual visit to the doctor are the ucleus of the followup o persos with diabetes. The programme icludes: Plaed visits 2-4 times a year HbA1c, BT ad weight check. I cases of microalbumiuria they also ivolve urie testig. Review of blood glucose measuremets at home, if relevat Iterview about livig with diabetes, icludig self-maagemet, psycho-social aspects ad the possibility of ivolvig close relatives, etworks, etc. Iterview about dietary, exercise ad smokig habits with a view to esurig isight ad ability to make coscious choices Iterview about the medical treatmet ad eed to make adjustmets to it or to the idividual treatmet targets Idetifyig eed for further patiet educatio Idividual risk assessmet (stratificatio) ad idetifyig idividual treatmet targets. Drawig up/adjustig a overall treatmet pla i collaboratio with the patiet Aual visit I additio to the above, the aual visit should iclude: Decidig o the eed for eye screeig: fudus photo ad eye examiatio by a ophthalmologist every secod year (more frequetly i case of proouced retial chages ad i case of pregacy) Chiropody examiatio: pedal pulse, malaligmets, callosities, pressure marks or maifest foot ulcers, moofilamet or vibratio sese examiatio. Assessmet of the eed for referral to a chiropodist ad ulcer cetre/diabetes out-patiets cliic Assessmet of symptoms of autoomic europathy, e.g. sexual dysfuctio, gastroparesis, etc. Examiatio for diabetic real disease: urie albumi-creatiie ratio or twety-four hour uriealbumi, s-creatiie Examiatio for cardiovascular disease: symptoms ad cliical sigs of ischaemic heart, brai or peripheral vascular disease. Screeig for cardiovascular risk factors: total cholesterol, HDL ad LDL cholesterol ad triglycerides Esurig the patiet gets relevat reimbursemets (e.g. for medicie, test equipmet, diet) Settig treatmet targets ad drawig up a treatmet pla. The purpose of the aual visit ad the plaed visits is to detect early sigs of diabetic sequelae ad to check ad adjust the treatmet of hyperglycaemia ad other risk factors for diabetic sequelae. I additio, the eed for referral to other regioal or muicipal services should be determied at each visit. This might iclude itesified patiet educatio with a view to improved self-maagemet or cosultatios with a case maager or a psychologist for patiets with particular problems i relatio to the disease. 3.6 Support for self-maagemet Accordig to the disease maagemet programme for chroic diseases the programme should cotai a descriptio of the cotributio of a active correlatio betwee the health service 30 Chroic Disease Maagemet Chroic Disease Maagemet 31

17 ad patiets to methods of ad support for self-maagemet through: geeral ad specific patiet educatio that cotributes to the geeratio of kowledge, skills ad attitudes i persos with a chroic disease pharmacological ad o-pharmacological self-moitorig ad self-treatmet programmes for particularly vulerable patiet ad populatio bases treatmet ad rehabilitatio kowledge sharig betwee healthcare providers ad patiets As regards diabetes, there is a lack of formalised atiowide iitiatives ad/ or programmes i all the above areas. There is evidece of or cosesus o the beefits ad itets i several of those areas, e.g. for self-moitorig of blood glucose ad specific patiet educatio. Furthermore, writte patiet guidelies are available, prepared by the professioal societies ad the Daish Diabetes Associatio o the basis of cliical guidelies or professioal cosesus Itesified patiet educatio Some patiets with diabetes that is poorly maaged or difficult to maage may eed itesified patiet educatio provided idividually or to groups of patiets. The teacher may be a urse or dieticia with specialist kowledge about diabetes. Referrals to itesified patiet educatio should be made by the doctor who is resposible for treatmet of the patiet s diabetes Vulerable patiets There is a eed to develop educatio programmes for particularly exposed or vulerable patiet ad populatio bases to support their self-maagemet capacity. Vulerable patiets are defied as: patiets who, due to severe illess, several cocurret diseases requirig treatmet, disabilities, etc. ad possibly a weak persoal etwork, are highly depedet o health ad/or social services; patiets who, due to weak persoal resources ad a poor or differet uderstadig of their disease, social or cultural circumstaces, are icapable of proper behaviour ad self-care. It may be relevat to offer specific educatio programmes to ethic groups. 3.7 Orgaisig the programme A wide rage of players i the primary health sector (GPs, medical specialists ad the muicipal health service) ad i the hospital sector are ivolved i the treatmet of patiets with diabetes. The Daish Health Act determies resposibility for a umber of specific areas. However, there is cosiderable scope for variatio withi the framework of the Act i terms of the actual orgaisatio of the programme i idividual regios or muicipalities ad, to some extet, across sectors. The disease maagemet programme for diabetes must be regarded as the basis for regioal or local plaig. Whe plaig the effort it should be esured the services described i the programme ca be offered to persos with diabetes i the geographical area covered by the disease maagemet programme; that the medical professioals have the ecessary qualificatios; that the programme is plaed as a graded effort appropriately orgaised ad coordiated across professioal groups ad sectors. 3.8 Graded care A populatio of patiets with diabetes ca be described by way of a stratificatio pyramid that divides patiets ito groups accordig to their differet eeds (Figure 1, page 19). Correct stratificatio esures that each patiet gets the treatmet correspodig to the complexity of the disease ad the patiet s persoal circumstaces ad idividual eeds Stratificatio criteria for persos with diabetes The choice of stratificatio criteria should take ito accout: 1. The degree of severity ad complicatios, etc. of the disease. 2. Ay co-morbidity ad sequelae of the disease. 3. The patiet s self-maagemet capacity. To esure that each perso with diabetes is always give the appropriate level of treatmet, the stratificatio should be dyamic, as the state of the patiet may improve, stabilise or deteriorate. The first assessmet of the most appropriate level of treatmet for each patiet should be made immediately upo diagosis, ad the o a regular basis, as a miimum i coectio with the aual visit. The first versio of the stratificatio criteria were draw up by the Geeral Medical Quality Project (Det Almemediciske Kvalitetsprojekt DAK) i cooperatio with the Good Medical Departmet (De Gode Mediciske Afdelig DGMA). They have bee tested ad evaluated i geeral practice i a umber of regios sice The criteria should reflect the three levels of the chroic disease maagemet pyramid where level 1 comprises patiets with well-maaged diabetes without sigificat complicatios; level 2 comprises patiets whose diabetes is poorly maaged or difficult to maage 32 Chroic Disease Maagemet Chroic Disease Maagemet 33

18 or with complicatios; level 3 comprises patiets with complex diabetes or several complex chroic diseases. Allocatio to level 1 requires all the criteria for level 1 to be met. Allocatio to level 2 requires either the criteria for level 1 or level 3 to be met. If a required criterio is ot met, the patiet should geerally be allocated to level 2. Allocatio to level 3 requires oly oe criterio to be met. Table 1. Stratificatio criteria for diabetes patiets developed uder the cooperatio project betwee DAK ad DGMA Criterio Lavel 1 Persos with well-maaged diabetes without complicatios Glycaemic cotrol after itervetio: Blood pressure mmhg Metabolic problems i coectio with treatmet Cardiovascular disease/large vessel disease The diabetic foot Lavel 2 Persos at high risk of/with begiig complicatios Lavel 3 Persos with complex diabetes or several complex chroic diseases HbA1c < 7% (0.07) HbA1c > 9 % (0.09) despite 6 moths attempt at optimised treatmet < 130/80 > 160/90 despite 6 moths attempt at optimised treatmet No No preset cardiovascular disease No Severe isuli resistace Preset cardiovascular disease Sigs of europathy or arterial isufficiecy Nephropathy Normal Microalbumiuria Retiopathy Normal or stable simplex retiopathy Ay progressio of the degree of retiopathy Tedecy to serious or uexpected occurreces of hypoglycaemia. Highly fluctuatig blood glucose. Foot ulcer/gagree/ Charcot foot Macroalbumiuria/ ephropathy Macular oedema or proliferative retiopathy These criteria describe the itesity, complexity ad sequelae of the disease, but ot co-morbidity (e.g. metal disorder or chroic obstructive pulmoary disease (COPD)). The patiet s self-maagemet capacity ad several other criteria of the geeric disease maagemet programme are ot covered by the above stratificatio criteria. These criteria eed to be further developed. The curret stratificatio criteria are beig tested ad evaluated i geeral practice which is why it would be expediet to postpoe the reassessmet ad expasio of the stratificatio criteria for diabetes patiets util testig has bee completed Practical applicatio of the stratificatio criteria Several health-care services require the same qualificatios regardless of whether the services are aimed at patiets at level 1, 2 or 3. I cases of diabetes that is complex ad difficult to maage, qualificatios at specialist level are required. The followig priciples should be followed whe determiig the local/regioal effort: For patiets with well-maaged or ewly diagosed type 2 diabetes without sigificat complicatios, treatmet should geerally be hadled by GPs or the muicipal health service. Patiets with ewly detected type 1 diabetes should be referred immediately to a diabetes cliic. For patiets with diabetes that is poorly maaged/difficult to maage ad/or with complicatios, treatmet should be hadled joitly by GPs, the muicipal health service ad the specialised health service (the hospital service ad/or medical specialists). For patiets with complex diabetes or several complex chroic diseases the greater part of treatmet is hadled by the specialised health service. Rehabilitatio ad self-maagemet support are hadled i cooperatio with geeral practices ad the muicipal health service Curret atioal orgaisatioal requiremets For certai patiet groups ad types of complicatios the Natioal Board of Health medical specialty guidelies cocerig atioal ad uiversity hospital service fuctios specify where they should be treated. It is stipulated that: 34 Chroic Disease Maagemet Chroic Disease Maagemet 35

19 Patiets with type 1 diabetes should be offered checkups at diabetes out-patiets cliics accordig to their idividual eeds. Pregat wome with isulidepedet diabetes should be referred to the uiversity departmets of gyaecology/obstetrics at Copehage Uiversity Hospital, Odese Uiversity Hospital, Aarhus Uiversity Hospital ad at Aalborg Hospital. Accordig to specific agreemet with the uiversity departmet, checkups ca take place at a local hospital offerig basic treatmet. Patiets with diabetes that is difficult to maage, icludig patiets with proouced isuli resistace ad isuli allergy, should be referred to the uiversity departmets of edocriology at Copehage Uiversity Hospital, Herlev Hospital, Odese Uiversity Hospital, Aarhus Uiversity Hospital ad Aalborg Hospital. Complex diagostics ad treatmet of vitreo-retial diseases, icludig i coectio with diabetes mellitus: the uiversity departmets of ophthalmology at Copehage Uiversity Hospital, Herlev Hospital, Odese Uiversity Hospital, Aarhus Uiversity Hospital ad Aalborg Hospital. Severe cases of diabetes mellitus i childre: the uiversity departmets of paediatrics at Glostrup Hospital, Odese Uiversity Hospital ad Aarhus Uiversity Hospital (Skejby Hospital). These provisios are to be revised i Coordiatio ad cooperatio Coordiatig fuctios Coordiators It is recommeded that all patiets with diabetes should have a coordiator who is resposible for: coordiatig overall care evaluatig the patiet s health o a ogoig basis esurig systematic follow-up ad proactivity cotributig to adherece to treatmet targets I geeral, this fuctio should be hadled by GPs. Some patiets oly have sporadic cotact with GPs for periods of time durig the course of their disease. I case of complex diabetes where treatmet is primarily hadled at the specialised level, resposibility will aturally lie with the medical specialists. Case maagers Some patiets eed particular support. Offerig such patiets icreased support to complete ad adhere to their treatmet ad rehabilitatio through the attachmet of a case maager is recommeded. The objective is to esure itesified, customised support for patiets with severe, complex eeds. Referral to a case maager should be made by the coordiator or the team resposible for the treatmet of the diabetes patiet Health agreemets betwee regios ad muicipalities The purpose of the health agreemets is to remove ay doubt about the distributio of resposibility for the provisio of specific services or the cooperatio ad coordiatio betwee the players i.e. regio ad local level. The tasks, qualificatios ad resposibilities of all the players ivolved to esure a coheret ad coordiated care programme should be described i health agreemets betwee the regios ad muicipalities. Represetatives of all the players ivolved should participate i the drawig up of these agreemets that form the basis for the implemetatio of the recommedatios made i the atioal disease maagemet programme ad for the distributio of tasks betwee the players i the regio ad the primary sector. As regards the hadlig of special fuctios such as case maagemet ad coordiatio of disease maagemet programmes at the regioal level it is particularly importat for the health agreemet to specify ad describe the tasks ad resposibilities. The agreemets may also outlie explicit requiremets for the qualificatios of the various players ad ay plas for further educatio Supportive iformatio techology I 2006, the Natioal Board of Health published a report prepared by MEDIQ o the possibilities of IT support for disease maagemet programmes for diabetes. The report demostrates the followig potetial beefits i coectio with supportive iformatio techology: Easy access to ecessary data exchage betwee the various health-care providers. Shared data basis across the various health-care providers (iformatio sharig). Better overview of the overall status of idividual care pathways, e.g. by visualisig key data. Access to decisio support. Support for systematic follow-up o diabetes patiets by way of aual visits ad plaed visits. 36 Chroic Disease Maagemet Chroic Disease Maagemet 37

20 The report emphasises potetial IT support for self-maagemet by way of: Caledar fuctio cocerig visits to the doctor Registratio of self moitorig by way of glucose measuremets Decisio support ad remiders i coectio with blood glucose regulatio Electroic diabetes diary Quality moitorig, research ad developmet Quality moitorig Moitorig of the quality of the programme should iclude both cliical results, orgaisatioal factors ad patiet experiece of the programme, ad the stadards ad idicators that form part of the Daish Quality Model should be applied. I additio, a umber of atiowide moitorig iitiatives i the diabetes area were i operatio or plaed at the ed of 2006: the Natioal Diabetes Register, the Natioal Idicator Project, the Daish Diabetes Database, the Daish Quality Model for the Health Service ad the Daish Geeral Practice Database. The followig idicator areas are used: Idicator area Natioal Natioal Daish Daish Geeral Diabetes Idicator Diabetes Quality Practice Register 1 Project Database 3 Model 4 Database 5 (NIP) 2 (*) Prevalece Icidece Mortality Metabolic or glycaemic regulatio Hypertesio Lipids Albumiuria Retiopathy Neuropathy (chiropody examiatio) Nephropathy (age 0-18) Severe hypoglycaemia (age 0-18) Ketoacidosis (age 0-18) Ophthalmologic treatmet Prevalece of blidess Writte, updated guidelies Audit reports Quality improvemets Actio plas i case of quality defects Idividual treatmet targets Lifestyle iterview Natioal Diabetes Register The Natioal Diabetes Register of the Natioal Board of Health provides a overview of diabetes icidece ad prevalece i the total populatio. The register is made up of the Natioal Patiet Register ad the Natioal Health Isurace Register ad, i time, data from the Register of Medicial Product Statistics Natioal Idicator Project (NIP) Sice 2004, diabetes has formed part of the Natioal Idicator Project (NIP). It collects data cocerig six idicators Daish Diabetes Database As part of the atioal diabetes actio pla of November 2003, a commo atioal diabetes database, the Daish Diabetes Database (DDD), is to be developed. It is the itetio to merge data o diabetes i adults (NIP), childhood diabetes (Daish Register for Childhood Diabetes (DIA-REG B & U) ad diabetic eye complicatios (DiaBase) ito oe atioal cliical quality database Daish Geeral Practice Database I coectio with the itroductio of a geeral practice diabetes programme, the DAK project (the Geeral Medical Quality Project) i cooperatio with the Research Uit for Geeral Practice at the Uiversity of Souther Demark has developed a software product for automatic data collectio o the treatmet of patiets i geeral practice. The collected data describe the diabetes patiet base o the basis of a umber of idicators ad the stratificatio data of idividual patiets Daish Quality Model for the Health Service The Daish Quality Model (DDKM) for the Health Service is a joit quality developmet ad accreditatio system for the Daish health service based o a commo set of stadards ad idicators. Diabetes has bee selected as oe of the disease-specific themes/areas, ad stadards ad idicators were developed i I the course of 2007 the stadards should be implemeted at all public Daish hospitals ad i a umber of muicipalities, ad i 2008 it should be measured whether the istitutios meet the ew quality targets Proposals for further moitorig iitiatives It is recommeded that, i future, the existig atiowide moitorig iitiatives should collect data that will cotribute to the moitorig of specific recommedatios i this disease maagemet programme. 38 Chroic Disease Maagemet Chroic Disease Maagemet 39