Use of the Danish Out of Hours Primary Care Service by Patients with Chronic Disease

Use of the Danish Out of Hours Primary Care Service by Patients with Chronic Disease PhD dissertation Lone Flarup Faculty of Health Aarhus University 2014

Use of the Danish Primary Care Out-of-Hours Service by Patients with Chronic Disease PhD student: MHSc Lone Flarup, Research Unit for General Practice, Department of Public Health, Aarhus University, Denmark Supervisors: Professor, MD, PhD Peter Vedsted, Research Unit for General Practice, Department of Public Health, Aarhus University, Denmark Senior Researcher, MHSc, PhD, Grete Moth, Research Unit for General Practice, Department of Public Health, Aarhus University, Denmark Professor, MD, PhD Mogens Vestergaard, Research Unit for General Practice and Section for General Medical Practice, Department of Public Health, Aarhus University, Denmark Senior Researcher, MD, PhD Morten Bondo Christensen, Research Unit for General Practice, Department of Public Health, Aarhus University, Denmark Professor, dr.med.sci., Frede Olesen, Research Unit for General Practice, Department of Public Health, Aarhus University, Denmark Assessment committee: Professor, dr.med. PhD Hans Kirkegaard, Center for Acute Research, Department of Clinical Medicine, Aarhus University Hospital, Denmark (Chairman) Professor, MD, PhD Gunnar Tschudi Bondevik, Department of Global Public Health and Primary Care, Faculty of Medicine and Dentistry, University of Bergen, Norway Associate Professor, MD, PhD John Sahl Andersen, Department of Public Health, Section of General Practice, University of Copenhagen, Denmark Financial support: The project was funded by the Danish National Research Foundation for Primary Care and by the Health Foundation. ISBN 978 87 900 0433 0 2

Acknowledgements ACKNOWLEDGEMENTS This dissertation was carried out during my employment at the Research Unit for General Practice at Aarhus University. First of all, I sincerely want to thank the Danish National Research Foundation for Primary Care (Forskningsfonden for Almen Praksis) and the Health Foundation (Helsefonden) for providing the funding which made the study possible. I would also like to thank the large number of people who have contributed to making the entire study process a challenging and educational experience. My profound thanks go to my supervisors Peter Vedsted, Grete Moth, Morten Bondo Christensen, Mogens Vestergaard and Frede Olesen for their support, guidance and supervision during all phases of the research process. I wish to warmly thank my main supervisor Peter Vedsted for his patience, for his advice of keeping the perspectives simple and for transforming confusion into clarity, for which I am so very grateful. I also wish to warmly thank Grete Moth for being my daily and open minded supervisor and for inspiring me with her great and insatiable appetite for constructive discussion. Likewise, I warmly thank Morten Bondo Christensen for putting scientific research into a clinical and reallife context. I warmly thank Mogens Vestergaard for his methodical guidance, his always positive attitude and his kind interest in my personal well being. Finally, I wish to deeply thank Frede Olesen for his pragmatic attitude and his personal warmth and concern. Furthermore, my profound thanks go to Flemming Bro, head of the Research Unit for General Practice, for his kind hospitality and support of this PhD project, which made it all possible. I also wish to thank all my colleagues at the Research Unit for General Practice and the Section for General Medical Practice at the Department of Public Health at Aarhus University for the good and educational atmosphere that characterizes scientific discussions in the research 3

Use of the Danish Primary Care Out-of-Hours Service by Patients with Chronic Disease environment and for all our informal talks, laughs and pleasant moments. Especially I wish to thank my roomies Anna Budtz Lilly, Henry Jensen, Mette Trøllund Rask and Mona Lisa Idriss Kise for great fun, good laughs and interesting research discussions in particular our silent agreement on the open (or closed) window policy. I wish warmly to thank Hanne Beyer, Dorthe Toftdahl Nielsen, Kaare Rud Flarup (Team Flarup), Birthe Brauneiser, Eva Højmark and Lone Niedziella for always taking care of any question that my colleagues and I may have and for dealing with the numerous practicalities throughout our projects. Very special and warm thanks go to Lone Niedziella for her priceless support, helpfulness and caring nature. I also wish to thank Anders Helles Carlsen warmly for his always calm supervision and pedagogical explanations of statistical terms and models. In addition, very special and warm thanks go to my two soul mates Marianne J. Jørgensen and Mads Lind Ingemann and to Linda Huibers, Christina Maar Andersen, Else Marie Dalsgaard, Margrethe Smidth and Karen Busk Nørøxe for all our good talks. I also wish to thank Helge Moustsen and Jens Jørgen Jeppesen at the Central Denmark Region for providing the data for my study. Very special thanks go to Jens Jørgen Jeppesen for being so extremely helpful in providing the emergency data assistance at the end of the process. Furthermore, I wish to warmly thank Mette Kjølby, Torsten Munch Hansen and Camilla Palmhøj Nielsen, and all my colleagues at the Centre for Public Health and Quality Improvement for their support, in particular Mette Byholt, Ghita Ølsgaard, Lars Rasmussen and Erik Riiskjær. Finally, I am totally indebted to all my many friends and my big family for their always warm support and never ending understanding, in particular Jeannie and my sister Jane. Last, but not least, I wish to thank my beloved husband and best friend ever, Henrik, for always being there for me and for being with me. And, of course, the largest thanks and the warmest hugs go to my three 4

Acknowledgements children, Mia, Søren and Katrine, for all our good laughs and talks and because of your way of putting science into the perspective of real life. 5

Use of the Danish Primary Care Out-of-Hours Service by Patients with Chronic Disease 6

Contents CONTENTS Contents... 7 Preface... 11 Outline of the dissertation... 12 The four papers of the dissertation... 13 Abbreviations/acronyms... 14 Chapter 1:... 15 Introduction... 15 Definition of chronic disease... 16 Chronic care... 18 The Chronic Care Model... 19 Danish General Practice and the Out of Hours Primary Care Service... 21 The Danish Out of Hours Primary Care Service... 22 Chronic care outside office hours... 24 Scope of this dissertation... 25 Introduction at a glance... 31 Chapter 2:... 33 Aims... 33 Chapter 3:... 35 Methods... 35 The LV KOS study... 38 The Out of Hours Primary Care Service in the Central Denmark Region... 38 Data collection... 39 The GP questionnaires... 40 Remuneration, approvals and ethics... 41 Defining the population with chronic disease... 42 7

Use of the Danish Primary Care Out-of-Hours Service by Patients with Chronic Disease Material and methods: Paper IV... 48 Chapter 4:... 51 Results... 51 Paper I... 52 Paper II... 55 Paper III... 59 Paper IV... 60 Chapter 5:... 63 Paper I... 63 Chapter 6:... 71 Paper II... 71 Chapter 7:... 85 Paper III... 85 Chapter 8:... 95 Paper IV... 95 Chapter 9:... 117 Discussion of methods... 117 Study design... 118 Data collection... 119 The LV KOS data... 119 The register data... 120 Statistical precision... 122 Internal validity... 123 Selection bias... 123 Information bias... 125 Confounding... 126 External validity... 128 Generalisability... 128 Chapter 10:... 129 Discussion of results... 129 Contacts to the Out of Hours Primary Care Service (Paper I)... 130 RFEs and diagnoses registered at the OOH contact (Paper II)... 131 Contact to daytime general practice and the need for OOH care (Paper III)... 133 30 day prognosis after OOH contact (Paper IV)... 136 8

Contents Overall discussion of the results... 139 Chapter 11:... 143 Conclusions... 143 Chapter 12:... 147 Perspectives and future research... 147 Chapter 13:... 151 English summary... 151 Chapter 14:... 155 Danish summary... 155 References... 159 Appendix 1:... 171 Questionnaires for the GPs (in Danish only)... 171 Appendix 1... 172 9

Use of the Danish Primary Care Out-of-Hours Service by Patients with Chronic Disease 10

Preface PREFACE 11

Use of the Danish Primary Care Out-of-Hours Service by Patients with Chronic Disease OUTLINE OF THE DISSERTATION This dissertation is partly based on data from the Kontakt og sygdomsmønsteret i lægevagten LV KOS 2011 (the LV KOS study); a research study carried out during a 12 month period from 1 June 2010 to 31 May 2011 for description of reasons for encounter at the Out Of Hours Primary Care Service in general practice in the Central Denmark Region. The project was carried out during my time as research assistant, which was just before my employment as a research fellow at the Research Unit for General Practice at the Department of Public Health, Aarhus University. Chapter 1 offers an introduction to the Danish healthcare system and to chronic care management and presents the definitions and demarcations of the five indicator disease groups on which the results of the dissertation are based. Chapter 2 presents the overall aim of the dissertation, and, furthermore, the specific aims of the underlying studies that constitute the present dissertation. Chapter 3 offers a brief description of the setting, methods and materials used in the four studies. Chapter 4 offers a summary of the main results of the four studies. Chapters 5 to 8 present the four papers describing the four studies. Chapter 9 discusses the methods applied, the validity of the studies and the potential bias. Chapter 10 offers a discussion of the results presented in the studies. Chapter 11 presents the main conclusions. Chapter 12 raises perspectives of relevance in future research. Chapter 13 and Chapter 14 present the English and the Danish summaries. Finally, the Appendices I and II present material used for the data collection in the LV KOS 2011 study. 12

Preface THE FOUR PAPERS OF THE DISSERTATION This PhD dissertation is based on the following papers, which will be referred to by their Roman numerals: I. A feasible method to study the Danish out of hours primary care service. (Published in Danish Medical Journal, May 2014). II. Chronic disease patients and their use of out of hours primary healthcare: a cross sectional study. (Published in BMC Family Practice, June 2014). III. Daytime use of general practice and use of the out of hours services in primary healthcare for patients with chronic disease: a cohort study. (Published in BMC Family Practice, September 2014). IV. The 30 day prognosis for patients with chronic diseases after contact to the out of hours service in primary healthcare. (Submitted to Scandinavian Journal of Primary Health Care, June 2014). 13

Use of the Danish Primary Care Out-of-Hours Service by Patients with Chronic Disease ABBREVIATIONS/ACRONYMS AMI CDR CI CMM CPR CRS DCR DHMA DPCR ED GP ICD 10 ICPC 2 Acute Myocardial Infarction Central Denmark Region Confidence Interval Chronic Care Model Danish civil registration number Danish Civil Registration System Danish Cancer Registry Danish Health and Medicines Authority Danish Psychiatric Central Registry Emergency Department General Practitioner International Classification of Diseases, 10 th Revision International Classification of Primary Care, Second edition IHD LV KOS Ischemic Heart Disease Kontakt og sygdomsmønsteret i lægevagten LV KOS 2011 (the LV KOS study) NHSR OCS OOH service PAS RFE National Health Service Registry Operating Computer System Out Of Hours Primary Care Service Patient Administration System Reason For Encounter 14

Chapter 1: CHAPTER 1: INTRODUCTION 15

Use of the Danish Primary Care Out-of-Hours Service by Patients with Chronic Disease INTRODUCTION Chronic disease constitutes one of the major causes of death and disability worldwide. According to the World Health Organization (WHO), chronic diseases account for approximately 45% of the global burden of diseases and 60% of all deaths (1). The increasing prevalence of chronic disease is mainly caused by the increasing average age of the population in developed countries in combination with the western lifestyle characterized by high calorie intake, tobacco smoking, alcohol consumption and physical inactivity. Thus, two thirds of the populations above 65 years of age in western countries are diagnosed with one or more chronic diseases. This development does not only impose an economic burden by placing heavy demands on the healthcare resources, but may also influence the quality of life of the affected individuals. These issues have given rise to discussions of how to ensure good and equal access to healthcare for those who need it most (2 5). Likewise, increased focus has been directed towards the importance of planning and providing wellconsidered healthcare to stimulate he healthy ageing effect (i.e. younger cohorts will demand less support, healthcare and social resources when they grow old) (6 8). However, despite increased efforts in chronic care, a number of patients with chronic disease are still not receiving the medical attention they need (9). This is underlined by estimations suggesting that only less than half of the western population who are diagnosed with a chronic disease will receive sufficient medical attention or care (7). Definition of chronic disease The WHO defines chronic disease as a condition or disease that is persistent or otherwise long lasting in its effects or a disease that comes with time (1). The main point is that the patients quality of life and expected life time depend on a 16

Chapter 1: continued (and not just episodic) reactive relation between the healthcare system and the patient. Changes in demography due to increasing average age and changes in the population s life conditions have changed the disease patterns and created new demands for healthcare. A hundred years ago, the most frequent health threats were episodic diseases (such as infections, accidents, death in childbirth and infant mortality) and diseases related to economic poorness (such as malnutrition). Current health threats are cancer, psychiatric diseases, diabetes and respiratory and cardiovascular disabilities; all chronic conditions with major impact on the quality of life and on the demand for increased and continuous medical attention. (10;11). Nowadays, most patients survive their episodic disease, and the median life expectancy increases in the society. This implies that lifestyle factors (such as inappropriate food, overweight, smoking and lack of exercise) all contribute to increased negative impact on the state of health, and chronic conditions constitute a major challenge, especially in the most exposed parts of the population (12;13). However, improved technology allows early detection and diagnosis of disease, also of chronic diseases. In addition, better welfare in general raises the populations expectations to the healthcare system. Therefore, it is of crucial importance that the provided healthcare is accurate and well considered in order to reach the specific and individual needs of chronic care for those who need it most (14). These facts call for analysis of the quality of the healthcare, in particular with respect to delivery of high quality proactive care. Furthermore, treatment and care of patients with chronic disease demand a well coordinated medical attention from several healthcare providers to ensure sufficient impact and to avoid gaps in the patients pathway through the healthcare system (2;11;15). 17

Use of the Danish Primary Care Out-of-Hours Service by Patients with Chronic Disease In line with the previous facts, figures from the Danish Health and Medicines Authority show that one third of the Danish population are now living with one or more chronic diseases and thereby account for approximately 80% of all Danish healthcare costs; this development stresses the necessity for providing still more targeted and tailored chronic care (11). Chronic care In accordance with the described needs, the past decade has shown a high political and professional focus on specific, cost effective and high quality chronic care. The overall aim of these efforts has been to transform chronic care from acute and reactive treatment into proactive, planned, patient involving and population and evidence based care (11;14 16). This should be performed both in the primary care sector with the general practitioner in the front line and in the hospitals in the secondary healthcare sector. According to the WHO, the first line in any healthcare organisation holds a crucial role for the individual and plays a key role for the prognosis of the chronically diseased patient (17). In Denmark, general practice holds the position as gatekeeper to the rest of the healthcare system. Together with the Danish regions, general practice also has the responsibility for providing healthcare out of hours. Hence, the Out Of Hours Primary Care Service (OOH service) takes over this responsibility outside office hours. The service is organized in large regional rota systems and run by the general practitioners (GPs). Thereby, Danish general practice possesses a highly important coordinating role in the detection and diagnosis of chronic disease and in the provision of the right medical treatment and chronic care follow up (18;19). To ensure optimal care for patients with chronic disease, consultations should be performed during daytime and not out of hours, where the reason for encounter should be characterised by an acute need for help. Nevertheless, it could be 18

Chapter 1: expected that the more people with chronic disease use daytime general practice, the more they would also use the OOH service as they the severe disease may cause a high need of medical services both day and night (20). On the other hand, it could be hypothesised that if patients with chronic diseases are regularly followed by the GPs during daytime, the need of out of hours care due to an exacerbation of the chronic disease should be lower compared to patients with no or only little contact to the daytime general practice. New knowledge in this area obviously has implications not only for the healthcare planning, but also for the assessment of future needs of proactive daytime care. Yet, the association between daytime general practice and OOH service use among people with different chronic diseases remains unknown. The Chronic Care Model The Danish Health and Medicines Authority has developed targeted guidelines, inspired by the Chronic Care Model (CCM), for healthcare providers in order to optimise chronic care (11;15;21;22). The main intentions of these efforts are to increase patient involvement and to ensure quality improvement and increased efficiency in the utilisation of healthcare resources (23). The CCM (Figure 1.1) was originally developed as a guide to healthcare organisations that wished to improve coordination and correlation in chronic care provided by different parts of the healthcare system and to ensure better patient involvement (14). The development of the model was motivated by limited evidence and gaps experienced in chronic care, and the main objective was to reduce acute medical needs through improved daytime care (7;14). Hence, the overall aim for developing the model was 1) to transform daily care for patients with chronic diseases from acute and reactive to proactive and planned care and 2) to eliminate gaps in the patient s pathway through the healthcare system. 19

Use of the Danish Primary Care Out-of-Hours Service by Patients with Chronic Disease The model consists of two levels; the goals to reach and the tools to use for reaching these goals (9;14;24). The goals of improved results in chronic care should be achieved in an interaction between a well informed, empowered patient and a prepared proactive practice team. To achieve the identified goals, six elements must be fulfilled: 1) The community must meet the patients needs by aligning resources and making targeted policies, 2) The health system must create a culture, an organisation and mechanisms that promote safe care of high quality, 3) Self management support must be implemented to empower and prepare the patients to manage their health and to improve their self care resources (patient empowerment), 4) A delivery system design must be implemented to ensure a well defined care taker team and on time evidencebased care, 5) Decision support must be implemented through evidence based guidelines involving the patients and finally 6) Clinical information systems must be implemented to facilitate timely and relevant care and provide possibility to share information with patients in the coordination of care (7;9;14). 20

Chapter 1: Figure 1.1: The Chronic Care Model (25) Primary care has a core position in the implementation of the CCM to provide proactive, involving and sustained treatment and follow up (3;14). A robust, well designed primary care system is central in reducing health costs and may help improve the quality in chronic care (3). Therefore, it is highly important to know of the medical problems presented by the patients and their reasons for contacting general practice, including the Out of Hours Primary Care Service, when the aim is to improve chronic care. Danish General Practice and the Out of Hours Primary Care Service The Danish healthcare system is tax financed and organised in two major parts: the primary healthcare sector (consisting of general practice, municipality based nursing and social services) and the secondary healthcare sector (consisting of 21

Use of the Danish Primary Care Out-of-Hours Service by Patients with Chronic Disease the hospitals) (26). The primary healthcare sector is in charge of general health problems, with general practice as first line provider of healthcare and gatekeeper for referrals to specialized treatment and hospital admission at daytime as well as out of hours. All Danish residents are entitled to public healthcare benefits and have free access to medical treatment and healthcare in the primary care sector as well as in the hospital sector (18;27). Patients who need medical advice usually start by consulting general practice, and, if necessary, the GP will refer the patient to specialized treatment. Exceptions include acute illness or accidents which are generally managed by the emergency departments (ED) (18). Approximately 98% of all residents in Denmark are listed with a certified GP. The GP clinics are nearly equally distributed throughout the country, and an average GP has approximately 1,600 listed patients for whom the GP is responsible for delivering primary care services at daytime (i.e. Monday Friday at 8 a.m. 4 p.m.). At daytime, the GP plays an important role in chronic care. Hence the GPs are responsible for establishing a close relationship to their listed patients for ensuring optimal and regular care. Outside office hours, the Out of Hours Primary Care Service take over the GP s responsibility for first line care (28;29). The Danish Out of Hours Primary Care Service The organisational structure of the Danish Out of Hours Primary Care Service (OOH service) is based on principles established by a reform implemented in 1992 (19;28;30). From the municipal reform in 2007 until 1 January 2014, the OOH service was organised in five regional rota systems in general practice based on fee for service remuneration. On 1 January 2014, the Capital Region of Denmark changed to a hospital based OOH service organisation in which telephones are answered by nurses who take 22

Chapter 1: care of the first part of the triage process. (This particular organisation is not described any further in this dissertation). In 2011, the OOH services covered between 0.6 and 1.8 million inhabitants per region, and nearly 3 million contacts were made to the five OOH services (507 per 1000 inhabitants/year). These comprise telephone triage, clinic consultations, or home visits (31). One telephone number takes all calls for one region, and the patients must make an initial telephone call to reach a regional OOH triage centre in order to receive either a telephone consultation, a referral to a face toface consultation in the clinic or a home visit (Figure 1.2). The GP organised OOH services are staffed by fully authorized GPs, but GP trainees can take part in the OOH services as doctors working in the clinic consultation or doing home visits (19). (In this dissertation the term GP is used synonymously for all doctors taking shifts in the OOH services). The OOH service forms part of a fully computerised electronic patient administration system (PAS) in general practice, but the GPs working in the OOH service do not have access to the day time patient record, unless a specific request is sent to the OOH PAS. After each contact to the OOH service, an electronic copy of the patient record is sent to the patient s GP, and administrative data on the provided OOH service are electronically transmitted to the Danish National Health Service Register and to the regional administration for remuneration of GPs (27). 23

Use of the Danish Primary Care Out-of-Hours Service by Patients with Chronic Disease Figure 1.2: Flow in contacts to the OOH services OOH telephone triage centre Telephone consultations Telephone referrals within the OOH service: face to face clinical consultation or home visits Face to face consultation in OOH clinic Home visit Chronic care outside office hours The GP is the central coordinator of the treatment course, and s/he is in close contact with the patient for three main reasons: to ensure quality of care, to ensure coordination of care and to ensure cost effective care (14;23). However, despite increased attention on chronic care in daytime general practice, some patients with chronic disease still have acute medical needs in the daytime and during the out of hours period. At present, chronic care is regarded as the main consumer of available resources in the somatic as well as in the psychiatric hospitals (11;16;32). A recent Danish study of daytime activities in general practice showed that approximately 50% of all contacts to daytime GPs came from patients with chronic disease (33), but we still need substantial knowledge on the characteristics of the contact patterns and the diagnoses resulting from the OOH contacts from patients with chronic diseases. 24

Chapter 1: To ensure comprehensive and coherent chronic care 24 hours a day, further insight is needed on contacts to the OOH service from patients with chronic disease. Furthermore, it is important to gain information on the correlation between the daytime activities and the care provided outside office hours for these patients. Scope of this dissertation Little is known about the chronic care provided by general practice outside office hours. Therefore, we are unable to draw a full picture of the efforts taken for chronic ill patients. Further research focusing on the reasons for encounter with the OOH service for these patients is needed to identify their medical needs and reasons for requesting healthcare attention at all hours of the day and night. In this dissertation, highly prevalent chronic conditions with high risk of comorbidity were chosen as indicators for exploring important aspects of chronic care. The primary focal points were the reasons for encounter, the diagnoses resulting from the consultations at the OOH service, the care provided at daytime general practice prior to the need of OOH medical care and the short term prognosis after an OOH contact. The term chronic disease is used as a collective term for the five chosen disease areas described as: heart disease, lung disease, diabetes, psychiatric disease and cancer. These diseases are highly predominant and require targeted medical efforts and considerable medical attention in daytime care. Although the diseases differ in aetiology, they all have severe impact on the individual s quality of life and they are also, like many other chronic diseases, regarded major burdens on the healthcare resources (7;17;34). Before going into a detailed description of the research questions in this dissertation, I will first present some definitions, demarcations and epidemiological facts about the five chosen disease groups: 25

Use of the Danish Primary Care Out-of-Hours Service by Patients with Chronic Disease Heart disease In this dissertation, heart disease is defined according to the International Classification Of Diseases, 10 th version (ICD 10) (35) as unstable angina (I20.0) and post myocardial infarction (I21) (cf. Chapter 3, page 32). These two diagnoses comprise a considerable part of the diagnoses on Ischemic Heart Disease (IHD). Although the overall incidence of IHD in general has decreased during the past two decades, the prevalence (including survivors of acute myocardial infarction (AMI)) is, however, moderately increasing, most likely because of the increasing average age and more refined treatment technologies, as the risk of developing ischemic heart disease increases with age (36;37). From 2000 to 2009, the total prevalence of mild to severe IHD in Denmark increased from 124,493 to 147,483 cases; 2.4% for women and 9.5% for men (36). The same trend was observed in other western countries (37). The prevalence of ischemic heart symptoms are often imprecise and hence prevalence rates are based on assessments from e.g. epidemiological studies and self reported health information (36). However, due to the increased proportion of elderly people in the population, the number of prevalent cases were estimated to be increasing from 125,000 in 2000 to 150,000 in 2009 (36). During the same period, the number of people who survived an AMI increased from 67,000 to 72,000, corresponding to approximately 3% of the Danish population. However, more than 50% of all heart related deaths in Denmark are still caused by AMI. If this trend continues, the IHD incidence rate will most likely decrease to approximately 10,000 in 2020, while the prevalence will increase to approximately 196,000 cases (36). General practice plays an important role by providing regular health checks with diagnostic tests of blood pressure and cholesterol levels, both in regard to early detection of ischemic cardiovascular diseases and secondary prevention of patients who have already developed a chronic cardiac condition. 26

Chapter 1: Lung disease In this dissertation, lung disease is defined according to a validated algorithm developed for identifying chronic obstructive pulmonary disease (COPD) in a population aged 35 years and older. The risk of developing COPD increases considerably with age. We applied the algorithm in a population which also comprised younger people, and this implied that we also included people with asthma in our study population (cf. Chapter 3, page 32) (38). The prevalence of asthma has increased substantially among adults of 18 years or older during recent decades, from approximately 6.1% of the Danish population in 1994 to 9.2% in 2002 (39;40). Another study estimated the prevalence to approximately 9.5% in 2006 (41) with an incidence rate at approximately 5.5 per 1000 person years, which is expected to increase due to urbanization and more refined diagnosing methods (42). Prevalence estimates of COPD in the Danish population vary from 5% (38) to 9% (43). The incidence rate of COPD is, however, difficult to estimate. The number of patients with COPD is expected to increase strongly in the future due to more systematic and coordinated diagnostic intensity in both general practice and at hospitals (38;44). Approximately 5,000 people die each year from COPD, and this figure implies that Denmark has the highest COPD death rate of all European countries (45). Both asthma and COPD are associated with depression, anxiety and increased risk of not only lung infections, but also of development of disabilities and death if the patient is not sufficiently treated (44;46). Therefore, it is important that these patients have regular contact to the daytime GP in order to ensure proper adjustment of the medical treatment and care. 27

Use of the Danish Primary Care Out-of-Hours Service by Patients with Chronic Disease Diabetes At present, approximately 250,000 persons in Denmark are diagnosed with diabetes and registered in the Danish National Diabetes Register (47), corresponding to 4.5% of the Danish population, while approximately 25,000 new cases are diagnosed every year (48;49). The prevalence has increased 2.5 fold since 1995, partly due to an increase in diabetes incidence, but also partly due to improved diagnostic efforts (48). Previous research has shown that more than 40% of all diabetes patients in primary care have diabetes related comorbidity (e.g. cardiovascular diseases, hypertension or neuropathy), and this group constitutes approximately 70 95% among the elderly patients (50). General practice holds an important role in the early detection of diabetes and in the provision of sufficient medical treatment of patients diagnosed with diabetes. Therefore, regular contact with the family GP is important for these patients in order to reduce the risk of comorbidity and late complications of the disease. Psychiatric disease In this dissertation, psychiatric disease is defined as schizophrenia (F20), schizoaffective disorder (F25) and bipolar affective disorders (F30 and F31) (cf. Chapter 3, page 32). The latest available data (a follow up study on the Danish population from 2000 to 2012 (51)) on the first occurrence of psychiatric disease showed a cumulative incidence on schizophrenia (adjusted for age) on 1.24% for women and 1.73% for men diagnosed before 50 years of age. The lifetime risk at 100 years of age was 1.56% for women and 1.93% for men. For schizoaffective disorder, the cumulative incidence on schizophrenia adjusted for age was 0.25% for women and 0.17% for men diagnosed before 50 years of age. The lifetime risk at 100 years of age was 0.35% for women and 0.22% for men. (51). The present prevalence of schizophrenia is approximately 0.5% in the Danish population, and the first appearance is usually seen from the mid teens (52). 28

Chapter 1: Crude data on schizophrenia indicate that men and women have almost identical incidence rates and cumulative incidences, while the estimates adjusted with respect to gender show that males from the age of 20 have both a higher incidence rate and higher cumulative incidence than women. However, women have a higher incidence rate than men after the age of 50 when including schizoaffective disorder (51). For bipolar disorders, the cumulative incidence (adjusted for age) is estimated to approximately 1.07% for women and 0.76% for men diagnosed before 50 years of age, while the lifetime risk is approximately 1.84% for women and 1.32% for men (51). The prevalence of bipolar disorders is more uncertain, but is estimated to approximately 0.4 0.7% of the Danish population, and the first appearance is usually seen in the early twenties (52). Patients with psychiatric disease are often characterised by a lack of insight in the disease and, therefore, they tend not to seek the daytime general practice for the psychiatric disease (53). However, due to the organisation of the Danish healthcare system, the GP is generally the link to psychiatric specialist care unless the patient is already registered in secondary care and followed by psychiatric specialist. In addition to regular monitoring of the mental health, it is also extremely important that psychiatric patients have regular physical health checks to reduce the risk of developing somatic comorbidity as psychiatric disease is highly correlated to both IHD, COPD and diabetes (54;55). Cancer As in most literature, this dissertation defines cancer according to the ICD 10, i.e. C00 96 except C44 (non melanoma skin cancer). The latest available data on cancer (56) show an overall incidence rate for all types of cancer (except for C44) of 515 per 100,000 for men, with a mortality rate of 454 per 100,000, while the incident rate for women was 222 per 100,000, with a mortality rate of 168 per 100,000 (57). The most prevailing cancer types among men were prostate cancer (138 per 100,000), colorectal cancer (69 per 100,000) and lung cancer (63 per 29

Use of the Danish Primary Care Out-of-Hours Service by Patients with Chronic Disease 100,000), while the most prevailing cancer types among women were breast cancer (143 per 100,000), colorectal cancer (53 per 100,000) and lung cancer (55 per 100,000). Mortality figures showed that lung cancer was the leading cause of death among men (54 per 100,000), followed by prostate cancer (34 per 100,000) and colorectal cancer (27 per 100,000). For women, the leading incident cause of death was lung cancer (42 per 100,000), followed by breast cancer (28 per 100,000) and colorectal cancer (20 per 100,000) (57). Even if treatment of cancer primarily occurs in a specialized hospital setting and is often performed by palliative care teams, the GP still holds an important position as the patient s family doctor and as the firm anchor during the entire treatment course. *** To get a closer insight into the care for patients with the five chronic diseases presented above, we need to address research questions such as: What are the reasons for encounter at the OOH service for patients with these five chronic diseases? Are the contacts characterized by exacerbation of the chronic disease? How is the use of daytime care correlated to the use of OOH care? And what characterizes the short term prognosis with respect to their health and the use of healthcare during and outside office hours? To the best of our knowledge, no previous studies have explored these issues as detailed as in this dissertation. 30

Chapter 1: INTRODUCTION AT A GLANCE The proportion of patients living with chronic disease is growing. In the western countries, the care for patients with chronic diseases consumes more than two thirds of all healthcare resources, and chronic diseases are estimated to account for more than 60% of all deaths. According to the Danish Health and Medicines Authority, one third of the Danish population is living with one or more chronic diseases. Naturally, this development has a marked impact on the quality of life of these people, but also affects the society in general as approximately 80% of all Danish healthcare resources are currently allocated to chronic care. Therefore, we need to consider if Danish chronic care could be refined to ensure better performance. Such improvement could be inspired by the Chronic Care Model in combination with recommendations and guidelines to ensure careful and successful implementation of the model. However, despite the targeted medical attention that specifically addresses patients with chronic disease; some patients still experience a need for acute medical help outside daytime. Consequently, we need to get better insight into OOH care for patients with chronic disease, but so far little is known about the use of the OOH service, the reasons for encounter (RFE) and the diagnoses made in the OOH service. Therefore, to ensure comprehensive and coherent care 24 hours a day, we need more research on the contacts made to OOH care; in particular, we need research on contacts from patients with chronic disease. Furthermore, to improve chronic care, we also need more research based knowledge on the correlation between the daytime activities and the care provided outside office hours for patients with chronic disease. 31

Use of the Danish Primary Care Out-of-Hours Service by Patients with Chronic Disease 32

Chapter 2: CHAPTER 2: AIMS 33

Use of the Danish Primary Care Out-of-Hours Service by Patients with Chronic Disease The overall aim of this dissertation was (first) to increase our insight into the use of the OOH service and medical activities taking place and (second) to gain knowledge of the healthcare seeking behaviour seen at the OOH service. The overall aim was addressed through the following specific aims set up for the underlying studies: 1. To describe the research study on contact and disease patterns in the Danish Out of Hours Primary Care Service entitled Kontakt og sygdomsmønsteret i lægevagten (LV KOS 2011). Furthermore, to describe the method of using a computerised questionnaire integrated into the existing electronic patient administration system in the Danish Out of Hours Primary Care Service (Paper I). 2. To describe the reasons for encounter and the diagnoses of contacts to the Danish Out of Hours Primary Care Service for patients with chronic disease. Furthermore, to examine whether the contacts were due to a new health problem or due to an exacerbation of an already diagnosed chronic disease. Finally, to examine how the contacts were completed (Paper II). 3. To analyse associations between the use of the daytime general practice and the use of the Out of Hours Primary Care Service for patients with chronic disease. Furthermore, to analyse whether the risk of contacting the Out of Hours Primary Care Service due to an exacerbation of the chronic disease was associated with recent face to face contacts with the daytime general practitioner (Paper III). 4. To analyse the 30 day prognosis after contact to the Out of Hours Primary Care Service for patients with chronic disease in relation to repeated contact to the Out of Hours Primary Care Service, contact to the daytime general practitioner, hospitalisation and death (Paper IV). 34

Chapter 3: CHAPTER 3: METHODS 35

Use of the Danish Primary Care Out-of-Hours Service by Patients with Chronic Disease This dissertation focuses on the use of OOH services among patients with chronic disease. The study population participated in a comprehensive population based research study of the OOH service in the Central Denmark Region in 2011 entitled Kontakt og sygdomsmønsteret i lægevagten LV KOS 2011 (the LV KOS study). This chapter offers a description of the methods used for generating the LV KOS population. Applied methods are also presented in Paper I. The method used for identifying eligible patients from the LV KOS population with the five selected chronic diseases will then be described. Hereafter, individual descriptions will follow of the methods used in the three studies described in the papers II IV; all these papers focus on patients with chronic disease. Table 3.1 gives an overview of the four studies in regard to study design, study population, data sources and primary outcomes. Figure 3.1 illustrates the three studies on chronic disease. Detailed descriptions are presented in chapters 5 8. Figure 3.1: Illustration of studies II to IV Daytime general practice Contact to daytime GP prior to OOH index contact Contact to OOH service (index contact) RFE & diagnosis (exacerbation or new problem), completion of contacts Patient 30 day prognosis Use of daytime general practice, OOH service, hospital & death Study III Study II Study IV 36

Chapter 3: Table 3.1: Overview of papers I IV Paper Study design Study population Data sources Primary outcome I Descriptive/ cross sectional study 21,457 randomly sampled contacts to the OOH service included in the LV KOS study LV KOS data on GP registrations of OOH contacts Description of an electronic data sampling method applied in the OOH service II Cross sectional study Adult patients (aged 18 years or older) from the LV KOS study from which patients with chronic disease (lung disease, heart disease, diabetes, psychiatric disease or cancer) were identified GP registrations of OOH contacts and nationwide registry data Reasons for encounter and resulting diagnoses III Historical cohort study with prospectively collected data Adult patients (aged 18 years or older) from the LV KOS study from which patients with chronic disease (lung disease, heart disease, diabetes, psychiatric disease or cancer) were identified GP registrations of OOH contacts and nationwide registry data The association between recent use of daytime general practice and use of OOH service IV Cohort study Adult patients (aged 18 years or older) from the LV KOS study from which patients with chronic disease (lung disease, heart disease, diabetes, psychiatric disease or cancer) were identified GP registrations of OOH contacts and nationwide registry data 30 day prognosis after contact to the OOH service in terms of repeated OOH contact, contact to daytime GP, hospital admission and death 37

Use of the Danish Primary Care Out-of-Hours Service by Patients with Chronic Disease THE LV KOS STUDY Paper I describes the LV KOS study; a research study of the OOH service in the Central Denmark Region. The LV KOS study was motivated by a need for updated knowledge about the Danish OOH service and lack of previous research in the area. The overall aim of the study was to describe the patients reasons for encounter at the OOH service and the healthcare activities taking place outside office hours. Furthermore, the aim was to analyse the patients medical needs and their experiences of the OOH care (58). The study was designed as a population based cross sectional study conducted in the OOH service in the Central Denmark Region during a 1 year period from 1 June 2010 to 31 May 2011. The study population comprised a random sample of 21,457 unique OOH contacts, representing a total population of 19,852 unique patients. The LV KOS study had two primary foci in relation to the data collection: 1) GP registrations of contacts made to the OOH service and 2) patient perspectives provided by a questionnaire survey among included patients. The patient survey is described in Paper I, but will otherwise not be described further in this dissertation. The Out of Hours Primary Care Service in the Central Denmark Region The Out of Hours Primary Care Service in the Central Denmark Region is one out of five out of hours organisations in Denmark (cf. Chapter 1, page 19) (19). A total of 700 GPs took part in the OOH service during the LV KOS study period on the basis of a GP organised fee for service rota system. Most of these GPs were also practicing in daytime general practice, either in a solo practice or in a GP cooperative. One telephone number to the OOH telephone triage centre covers all calls to the OOH service. Under a special union agreement applicable for the Central 38

Chapter 3: Denmark Region (from 1 September 2012), the OOH telephone triage centre also covers all calls to emergency departments (EDs), but this will, however, not be described further in this dissertation. As previously described, the patients must first make an initial telephone call to the OOH triage centre in order to receive treatment in the form of either a telephone consultation, a referral for a face toface contact in one of the consultation rooms located on 11 different addresses in the region or a home visit (cf. Figure 1.2, page 21). The OOH service forms part of a fully computerised PAS in general practice, but (as described earlier) the GPs working in the OOH service do not have access to the daytime patient records without specific request, and specific information must then first be forwarded to the OOH computer. After each contact to the OOH service, an electronic copy of the patient record is sent to the patients own GP, and administrative data on the provided OOH service are electronically transmitted to the Danish National Health Service Register and to the regional administration for remuneration of the GPs (27). Data collection Data on the population and their contacts to the OOH service were collected by means of an electronic pop up questionnaire device integrated into the existing OOH PAS. The GP had to complete a questionnaire after a unique contact to the OOH service for every 10 th telephone triage contact (comprising two registration categories: 1) telephone consultation or 2) telephone referral within the OOH service), for every third face to face clinic consultation and for each home visit (cf. the structure described in Figure 1.2, page 21). Each registered contact was marked by a unique record number for the contact and by the unique civil registration number (CPR) which is assigned to all Danish residents and used as a personal identifier in all Danish national registries in accordance with the Danish Civil Registration System (59;60). The GPs were electronically invited to 39

Use of the Danish Primary Care Out-of-Hours Service by Patients with Chronic Disease participate in the LV KOS study when logging on to a duty session in the OOH computer system. Only one GP was permitted to register contacts in each 8 hour shift for each contact type. The pop up invitation only appeared until the first GP had accepted. Meta data on the GPs were obtained electronically from the OOH computer system. These data included the characteristics of the participating GPs and of all GPs working in the OOH organisation during the study period, the unique GP authorisation number, and GP (GP or trainee) type, gender and age. All data were securely transferred to a database at Aarhus University (Microsoft Access Engine Database 2010). The GP questionnaires A thorough literature search revealed that no existing questionnaires were appropriate for our specific focus on OOH contacts. Therefore, we composed ad hoc items addressing the specific OOH contact types. The final questionnaire comprised the following items: assessment of the reasons for encounter, GP assessment of whether the contact was due to exacerbation of already diagnosed chronic disease or new health problem, duration of symptom(s), assessment of severity, suggested diagnosis, how the contact was managed (i.e. completion by telephone consultation or further referral to face to face or clinical OOH consultation, home visit, hospital admission or other (e.g. primary healthcare, nursing home, police)), prescription of medicine and GP assessed medical relevance of contacting the OOH service rather than other healthcare providers (Appendix I). The GP assessed reason for encounter and diagnosis were subsequently coded according to the International Classification of Primary Care, Second edition (ICPC 2) (61) by specially trained research assistants and validated by one of the members of the research team. 40