Disease Management

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1 General information

1.1 Definition

Disease management is the concept of reducing health care costs and improving quality of life for individuals with chronic conditions by preventing or minimizing the effects of the disease through integrated care. Disease management programs are designed to improve the health of persons with chronic conditions and reduce associated costs from avoidable complications by identifying and treating chronic conditions more quickly and more effectively, thus slowing the progression of those diseases.

1.2 Strategies and aims

Strategies for coping with the disease are individual and depend on the subjective theory of the disease.
They are very much based on previous experiences such as the type and severity of the illness, their own coping experiences, and the experiences of others.
Coping with illness is purpose- and hope-oriented. Early counseling, motivation and rehabilitation facilitate the process of coping with the disease. Therefore patients will draw social resources primarily from emotional support, but also from the availability of therapeutic offers. The construct is based on the extent to which a person believes that the occurrence of an event is dependent on one's behavior, that is, whether the locus of control is inside or outside the individual. Natural coping strategies are often slowed down by defense mechanisms, they also occur unconsciously or consciously. Examples include denial, intellectualization, and projection. They help to reduce unbearable affects such as fear, overwhelming anger or shame to a tolerable level and thus to control situations. One finds denial reactions that take place consciously, especially in intensive care units, after heart attacks that were experienced as threatening, after interventions that have exceeded personal processing capabilities.
While resignation, self-recrimination, quarrels, personal withdrawal and trivialization are referred to as depressive coping, active coping is expressed through the active search for information and support, problem analysis, the relativization of risks and social comparisons. Optimism, self-encouragement or adaptive distraction support these coping processes. The problem will be approached in four steps:

1.Recognize
By giving special importance to the biopsychosocial anamnesis.

2. To name
By expanding the diagnosis to include subjective disease theory, motivation for change, and psychosocial burden.

3. Individual strategies
These should be developed together with the patients - therapy as a "shared decision".

4. Awareness and anchoring
Psychosomatic and rehabilitative measures can only be effective if they are anchored in education and training and in health policy.

1.3 Existing programs (example)

Disease management of Bronchial asthma for children and teenager in the hospital Landeskrankenhaus in Germany. In the following will be shown their way of treating the chronic disease and approaches in several steps:

Introduction to daily rehabilitation
In the introductory phase, we get to know the children and young people – and they get to know us. We discuss the personal goals of the stay with you and your legal guardians. The individual problems are surveyed and their effects are highlighted. In addition to a detailed anamnesis, there is also an admission examination including a lung function test. This is flanked by an introduction to the station procedure.

Recognizing individual challenges
The problems associated with a respiratory disease (bronchial asthma) vary in severity. Together we will work out which of these problems burden the children and young people the most. We consider physical, psychological and social aspects.

Self reflection
What situations and causes trigger seizures? How can asthma attacks be avoided? The children and young people are supported in recognizing their personal strengths in order to strengthen meaningful behavior. Training in the anatomy / physiology / pathophysiology of the airways and triggers forms a basis for this in order to give children and young people a deeper understanding of how their bodies work.

Therapeutic approaches
The therapy in our clinic is multifaceted. For patients suffering from bronchial asthma, the focus is on the following therapy and training measures:

• Peak flow training
• Inhalation
• DA/SPACER
• Overview of the active substances
• Discussion of your own current therapy
• Emergency management
• Traffic light scheme
• Breathing exercises
• Breathing positions
• Pursed lips
• Age-appropriate role-playing games (e.g. "Crawl through bronchus" with seizure situation)

2 Monitoring chronic conditions

Chronic diseases are characterizes by the fact that they last for long periods of time, usually over a year. Suffering from such a diseases one will experience difficulties to do their every day chores. Moreover, they might need medication over a longer period of time or even regular consultations and visits to the doctor. That is the main reason why coping with such diseases might arise some problems. It is not to be compared with a normal flue, for instance, where you know you will get better in a week. Chronic illnesses might change your whole lifestyle in numerous ways.
As soon as you will seek help form your healthcare provider you will be designated a plan of treatment to meet with your specific needs. Nowadays not only the doctors will work in your best interest, but there are a lot of apps, sensors and different monitoring devices and techniques that will simplify coping with your illness. In addition, you will learn to breath more relentlessly because the disease management programs are here to keep track of your treatment plan but also your evolution.

2.1 Diabetes

Diabetes or diabetes mellitus as it is used in medical terms, is a metabolic disease that is correlated to high blood sugar. Insulin, a hormone produced in our body by pancreas, has the role to keep our blood sugar down. In diabetes our body either doesn’t produce enough insulin or doesn’t produce at all. There are 3 types of diabetes:

• Type 1 diabetes which is an autoimmune disease. Our body attacks our pancreatic cells so we don’t have insulin at all. Injections with insulin are needed as a form of regular treatment.
• Type 2 diabetes it a form of diabetes where our body becomes resistant to insulin and our blood sugar level in blood rises. Here there are diversity of treatments prescribed, depending on one’s needs.
• Gestational diabetes, only occurs during pregnancy.

The following study shows how dramatically type 2 diabetes has increased in the last 60 years in the US. If in 1958 there were under 1 million people suffering from this chronic disease, in 2015 the number has increased enormously to almost 25 million of sick people. The causes are multiple: polyuria, polydipsia, fatigue, increased hunger, blurred vision, numbness in the limbs, sores that don’t heal, weight loss.
Although type 2 diabetes cannot be healed it can be monitored and managed. Today we have a handful of programs that go hand in hand with doctor’s advice. Such programs are for example DEP (The Diabetes Equity Project) or BHCS (Baylor Health Care System). These are non profitable health care providers whose goals are to improve equity in health care access. They have a patient centered approach and work on effectiveness when it comes to coping with chronic diseases.
A BHCS Diabetes Council was established in October 2008 to provide a systematic approach to diabetes care. They have their own clinics but also collaborate with few hospitals, where they can provide the necessary support. When a patient comes to their clinic some streps are directly taken into consideration:

1. Stabilizing the blood sugar level
2. Improving the insulin administration
3. Improving the treatment plan

A lot of effort in put into finding the appropriate treatment plan: For that this center is currently offering a standardized diabetes education training plan offered by care coordinates. Also a support group is implemented for a better understanding and sharing challenges of coping with the disease. Also for patients admitted at hospitals which are in collaboration with BHCS have a possibility in attending the educational courses. A workgroup from BHCS Diabetes Council is involves in the following initiatives:

• Providing accurate and reliable online diabetes resources for ambulatory patients
• Standardizes diabetes reading materials to keep patients up do date
• Providing a standard diabetes staff educators for patients outside their
• Initating a diabetes wellness program

BHCS transformed a local recreation center into the area's first and only diabetes health and wellness institute. Their aim was to raise awareness of this chronic illness but also to monitor their patients development and provide the best healthcare possible. They provided a lot of services such as: a full time on-site physician and nurses, regular visits to specialist, certified diabetes educators, physiologist, community diabetes ambassadors. Other services include: affordable medication, health and wellness programs, nutrition and cooking classes, social services, fitness professor.
Whereas diabetes is a self-manageable disease (checking blood sugar, daily exercises, diet), there are a lot of tools that can be useful in our every day life. For instance there are a lot of free apps that help you keep track of your exercising schedule. They can also notify you at a certain hours and are also there to time and organize everything for you. Other handy apps when it comes to diabetes are diet apps. They can find any reciepe you want, no need to add sugar or give up the guilty pleasure in our lives. They are there to adjust your diet, making it more tasteful but healthy. When you think about diabetes you instantly think of blood sugar. Sometimes it can be exhausting keeping constantly track of it or steeking a needly in your finger every 8 hours. The CGM (constant glucose monitoring) is a system that automatically tracks your glucose levels 24/7 using a small sensor worn on the back of the upper arm. There is an app or a reader (as you wish) that lets you view your blood sugar level at any time. If it drops or rises to an abnormal level, it will instantly notify you.

2.2 Cardiovascular disease

As the name already implies, cardiovascular diseases are affecting directly the heart or blood vessels. Usually fat will deposit inside the arteries and therefore a blood clot is about to be formed. It may also be associated to the damage of big arteries. CVD is the main cause of death in the UK. There are 4 types of CVD:

1. Coronary heart disease where the heart doesn’t receive the oxygenated blood. It can lead to angina, heart attack or heart failure.
2. Strokes when where blood supply of the brain is completely cut off or only temporary disrupted. This can lead to brain damage or death.
3. Peripheral arterial disease, where a blockage of the limb’s arteries occurs. Sometimes it can also lead to amputation.
4. Aortic disease when a group of conditions affect the aorta such as aneurysm.

There are numerous ways of coping and treating cardiovascular diseases. One can monitor the blood pressure, cholesterol. Of course a healthy diet or being active plays an important role.
Digital health applications have the potential to improve one’s health. Because the phone is so accessible nowadays, opportunities have developed worldwide to deliver healthcare digitally and expand exponentially with strategies such as internet portals, data-driven precision medicine and smartphone applications. In the Australian healthcare , EHR (electronic health record) offers a software systems that shows clinicians previously prescribed drug, referrals, coordination of care, clinical coding, billing, quality improvement activities. As such, use of EHRs to analyze digital health interventions might show an effectiveness in reducing CVD risk.
The remote cardiovascular monitoring is one method which has been successfully applied in today’s era. It involves collecting data remotely from persons with a cvd or in risk of it. Symptoms, body weight, activity, blood pressure, pulse rate and regularity, heart sounds, respiratory rate, an electrocardiogram, oxygen saturation and sleep quality can all be assessed very quickly. These methods involve different gadgets such as a watch or patch2.
Patients with heart failure or a history of failed sudden cardiac death might have cardiac implantable electronic devices such as a defibrillator.

All this devices which are here for monitoring patients at risk of heart failure can speed up actions such taking appropriate medications, modifications to drug therapy or early clinical face-to-face review. There are also home delivery of medications such as Amazon’s PillPack which can close the loop from monitoring to treatment.
Preferably, patients are being engaged in the management of their own health via patient-facing interfaces such as smartphone apps. This increased use of digital health tools enlightens a future heavy with digitally supported self-management so that with the doctors or nurses are only getting involved when needed.

2.3 Aging related conditions

As we get older there are some conditions and illnesses that we are more likely to develop. Our understanding of the biology of aging and longevity has grown over the past two decades. The world populations have continued to grow older throughout the world and our awareness of the challenges for human healthcare and well-being has become more acute. A lot of disease could be caused by the aging process. Our organs begin to deteriorate so that there is no specific cause for a certain disease. Some disease which develops in time are represented in the following scheme. Sometimes elderly can develop a multitude of such disease whether their origin is vascular, metabolic or even neuronal.

A great many elderly persons receiving care have functional limitations because of these diseases. For example they have reduced sensory, cognitive, or motor capabilities and may require disease management for multiple chronic conditions. Although personal health informatics has the potential to empower patients to become more active in the care process, the elderly may be disadvantaged unless the designers of both software and hardware technology consider their needs explicitly. Sometimes elderly have multiple challenges dealing with the modern technology so the designers of such apps or web programs should keep in mind the usability and accessibility. However these aspects are often neglected by designers and evaluators.

2.4 Chronic obstructive pulmonary disease

Chronic obstructive pulmonary disease or short known as COPD is a chronic inflammatory lung disease that causes obstructed airflow from the lungs. Symptoms include breathing difficulty, cough, mucus production and wheezing. It's typically caused by long-term exposure to irritating gases but most often is caused from cigarette smoke. People with COPD are at increased risk of developing heart disease, lung cancer and a variety of other conditions.
It is also the name for a group of lung conditions that cause breathing difficulties such as:

• emphysema – damage to the air sacs in the lungs
• chronic bronchitis – long-term inflammation of the airways

The breathing problems tend to get gradually worse over time and can limit your normal activities, although treatment can help keep the condition under control. That is why the disease management plays an important role in keeping the breathing under normal control.
Different healthcare providers, such as doctors, nurses, and physiotherapists, typically provide different types of care to people with COPD. They prescribe medication, guide self-management, provide education, present exercise training. Previously, people with COPD could visit one or more different healthcare providers, and these providers would work independently. The goal of an integrated disease management programms is to include different components of care by which different healthcare providers are co-operating and collaborating to provide more efficient care of better quality.
There are a lot of programs for COPD management such as General Chronic Disease SME Programs.The SME programs that follow are for people with any chronic health condition. The cost varies by organization, but rarely is more than $50 and it is presented in an on site workshop developed by Stanford university. At this course are presented techniques to deal with problems such as frustration, pain. Managing depression better breathing techniques, eating healthy, effective communication are also subjects discussed during the workshop.
The Chronic Disease Self-Management Program Tool Kit for Active Living provides useful information in a self-study format that you can receive by mail. The tool kit helps you construct your own self-management plan to deal with your chronic condition through exercise, and strategies to reduce stress, fatigue, pain and other symptoms. It encourages goal setting, action planning, and thinking and acting .
Genesis HealthCare System's COPD Readmission Prevention Program in Zanesville, Ohio, uses a chronic disease care management approach to improve readmission rates for COPD patients. Through the use of registered nurses serving as both navigators and tobacco treatment specialists, the program is able to offer assistance to COPD patients throughout the continuum of care. The American Lung Association's Better Breathers Club connects people with various lung diseases to resources, support, and education. Activities are led by trained facilitators and are offered nationwide.

Medication is also important when it comes to self management of the disease. In case of COPD bronchodilators are recommended. Bronchodilators relax airway smooth muscle and partially improve airflow obstruction. There are viewed as a central treatment. So it is important that the patient is educated well in their usage
Long-term domiciliary oxygen therapy can reduce mortality in hypoxaemic COPD. Consequently it is important to identify and treat patients with hypoxia by pulse oximetry as well as the effects of hypoxia. Reporting the saturation of the oxygen back to the health care is crucial in adapting a new treatment more suitable for the chronic patient. Also, the use of the pulse oximeter has reduced mortality and increased the quality of life for the COPD patients by rapidly identifying the cause and introducing the quickly the oxygen therapy.
COPD is a chronic and disabling condition caused by smoking. Disability can be minimized by a systematic approach to management that emphasizes the use of safe, effective medications, withdraws unsafe or ineffective therapy, and attends to the effects of physical deconditioning and psychosocial distress through rehabilitation.

3 Into the future

3.1 Applications

Advances in information technology (IT) have introduced new design approaches that support health care delivery and patient education. Such advances enable a fundamental redesign of health care processes based on the use and integration of electronic communication at all levels. Healthcare IT has the potential to empower patients and support a transition from a role in which the patient is the passive recipient of care services to an active role in which the patient is informed, has choices, and is involved in the decision-making process.

Review of applications:

1. Internet based applications
2. Mobile devices
3. Home telehealth applications
4. Usability and user acceptance
5. Data transmission

1. Internet based applications
The Internet provides a platform for consumers to access health information. The number of web-based patient education sites that provide access to information related to patients conditions has been increasing. The web enables patients communication between patients and health care providers or among patients and/or community members. Internet technologies have been utilized for disease management in many clinical areas, e.g., in asthma and diabetes management, where frequent monitoring can lead to early detection of potentially critical situations and timely intervention. In this context, a distinction needs to be made between applications that support pure self-care (without involvement of a health care provider) and applications that provide IT- enabled provider support of self care or disease co-management (vs. the traditional model of provider-administered and controlled care delivery).

2. Mobile devices

Mobile health applications focus on serving the needs of the user by providing widespread access to relevant information and/or remote data capture, thus eliminating the need for the user to be physically linked to a network or restricted to a specific geographic location. The use of mobile IT devices such as personal digital assistants (PDAs) and cellular phones in health care is increasing. For health care practitioners, the use of mobile IT can bring additional resources to the point of care and can change the location of that point of care. Earlier research into using mobile IT devices, such as PDAs or cellular phones, emphasized the collection of data from the patient to facilitate clinician decision making. There are a few applications that provide real-time decision support to patients as well. Despite the movement toward patient-centric applications, most applications described in the literature follow the old model of decision-making in which the patient is a receiver of instructions rather than a participant in the management process. In these applications, it is assumed that patients will comply with recommended interventions and there is little follow-up to examine whether and how the patient did so.
Patient-centered mobile health care applications have often targeted the areas of asthma, diabetes, and chronic obstructive pulmonary disease (COPD). Mobile health promotion or wellness applications have primarily addressed smoking cessation, nutritional intake, and vaccinations.

3. Home telehealth applications
Home telehealth applications (also known as telehomecare applications) utilize telecommunication and videoconferencing technologies to enable a health care provider at a clinical site to communicate with patients in their homes. Such an interaction via videoconferencing is called a virtual visit. In this context, the term actual visit is used to describe the traditional visit of the health care provider to the patient's home that includes a face-to-face interaction. In addition to the use of videoconferencing to enhance interactions, telehomecare applications utilize vital sign and other reporting devices that allow patients to become more involved and in many cases to oversee the monitoring process.

4. Usability and user acceptance
The usability of mobile health systems is a key factor in the acceptance and diffusion of such technology in disease management and wellness promotion. In this context, four factors need to be addressed: user-friendliness, usability, user competence, and confidence. The first two factors deal mostly with the type of mobile technology (hardware matters such as size, noise, aesthetic presence, and obtrusiveness, and software matters such as user interfaces and device operation), whereas the last two factors relate more to users and their perceptions.
The rate and impact of errors, at all steps, e.g., data acquisition, use of sensors, manual data entry, networking, and support services, must be analyzed. Furthermore, end users need to be confident in the system's performance. The latter involves challenges such as minimizing false positive alerts, protecting data security, maximizing diagnostic accuracy, etc. Special design considerations should apply when developing systems for the elderly or for other populations with functional limitations.

5. Data transmission
Patient-centered applications often require the secure exchange of clinical data via electronic messages from different patient record systems to consolidate the disparate data required for disease management. To allow the correct interpretation of the exchanged information and adequate responses by the receiver, both a semantically sound and technically feasible set of standards are required.

3.2 Challenges

Opportunities for personal health informatics to improve health outcomes are plentiful. Even worldwide, the access to mobile phones is becoming nearly ubiquitous, and the affordability of health sensors and devices for continuous monitoring and just-in-time intervention is also improving rapidly. However, we also see upcoming challenges in the areas of payment models and equity.

3.3 Future perspective

As health care moves from being clinic-centric and hospital-centric to person-centric and more proactive, there’re many opportunities for new advances in personal health informatics to facilitate this change and improve health outcomes. As mentioned earlier, advances in the assessment of person state trough new always-on sensors and improved computational modeling will allow more tailored and timely messaging and interventions. Virtual reality and augmented reality are important innovations that can transform the way that individuals, especially older adults, are cared for. Artificial Intelligence innovations that could lead to more tailored messages for a person’s health and wellness could overcome barriers such as remembering to take their medications by targeting cues to improve care. Finally, fusing the information from sensors could allow for improved assessment of people and their health. Many of innovations, however, will need to be social and protocol based. For example, new workflow and hiring practices will be needed to compensate for the data and information these innovations will create. An increased emphasis on proactive person-centered care to improve outcomes and reduce costs will necessitate better use of community health workers and health behavior change coaches that interface with both the patient and the clinical team. One of the most exciting, though potentially alarming consequences of our extensive use of the Web for shopping, communicating, and learning is that each of us leaves behind a profile of who we are, what we like or dislike, what we know or don’t know and what we want or already have. When combined with data mining and natural language processing techniques, it is possible to create highly targeted and predictive personal knowledge. Data created by consumers, coupled with ubiquitous computing, might provide just in time nutritional consults, over the counter medication advice, or advice that might prevent illness, such as convenient locations to receive a flu vaccine or when to begin medications for seasonal allergies. We can expect the use of these massive data sets also called “big data” to impact how medical care is personalized. While the direction that consumer health informatics will take in the future is at best, educated speculation, it is clear that as long as patient-provider partnership are endorsed, technology will be a third partner in ensuring that activated consumers manage their health and disease effectively.

4. Sources

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