Treat Yourself!: Improving Chronic Illness Management
As of 2016, seven in 10 deaths are caused by a chronic illness every year.
In addition to this, 40% of the U.S. population is currently living with one or more chronic conditions, and this number grows each year. The number of persons with chronic disease is estimated to rise to 148 million by the year 2030. Millions of people are living with chronic illness, and many of them are not caring for themselves properly. Despite the recognition that learning to live with chronic disease may well be one of the most important developmental tasks of aging, neither medical care nor traditional health education has adequately addressed daily living skills and quality of life issues for people with multiple chronic diseases.
Improper care can possibly lead to fatal outcomes. Patients’ self-management practices have significant consequences on morbidity and mortality in illnesses such as diabetes. When transitioning into adolescent years, children often struggle with managing their illnesses. Those who suffer from chronic illness tend also to suffer from a loss of self identity as the illness takes over their lives, and it begins to define them. Chronic illness can affect anybody at any point in life;therefore, the education of patients needs to be changed.
In order to extend the comfort and life expectancy of those with chronic illness, physicians need to prioritize developing more approachable and open relationships that foster communication and education with the patient. Usual medical care often fails to meet the needs of chronically ill patients, even in managed and integrated delivery systems. Very few studies have explored the natural clustering of chronic conditions despite the fact that those who are diagnosed with chronic illness, are likely to be diagnosed with another if they have not yet. The focus of health services research must realign to be more in line with the complex experience of patients. “Neither medical care nor traditional health education has adequately addressed daily living skills and quality-of-life issues for people with multiple” (Van Korf).
In order to improve the care of chronic effective systems, capable of implementing those treatments, are required. An effective collaboration between patient and physician leads to positive outcomes. Patient centered care is said to be essential in building a relationship with patients. When questioned about this notion, Dr. David Ni, MD stated that medical providers must consider what resources the patient has and what their schedule might look like, being as flexible as they can.
This individualized stepped care system assumes that all patients are different and require different levels of care and focuses on monitoring outcomes. This has been advocated for many chronic conditions, including hypertension, diabetes mellitus, nicotine dependence, high cholesterol levels, asthma, bulimia, gastroesophageal reflux, back pain, alcohol dependence, and depression. Physicians must be focusing on continuity with their patients and work to protect their interests and preferences. Chronic illness can majorly impact the way a patient views themselves and can even lead to problems with anxiety and depression. “Those who suffer from chronic illness also tend to suffer from a loss of self identity as the illness takes over their lives and it begins to define them” (Charmaz).
Having multiple chronic conditions also makes it more challenging for patients to participate effectively in their own care. Chronically ill persons not only view dependency as negative, but also they often blame themselves for it. Illnesses that may require care from family or friends can make the patient feel as though they are a hassle to care for. Costs of treatment and insurance added on to this can feel substantially burdensome. Independence, or the lack thereof, becomes a significant part of their lives and determines their self worth.
Primary care providers face a significant challenge in helping patients manage their chronic conditions to improve their health and quality of life in a way that is efficient and as self manageable as possible. Some illnesses require a high degree of self-management in order to be controlled. Effective management requires that appropriate clinical care is received while coping with the psychological effects of the illness. It is important that patients have an outlet to let out their frustrations and be honest about their progress. “Participation in community-based support groups is a common strategy for promoting self-management in adults with chronic illness” (Sawyer).
Chronic illness is more than just a physical ailment it begins to affect the mind of the patient as well. Self-management tasks such as engaging in activities that promote health, interacting with healthcare providers, monitoring physical and emotional status, and monitoring impact of illness on ability to function. Self-management habits must be monitored as soon as treatment is begun. “Over the first few years after the diagnosis of type 1 diabetes in childhood, diabetes-related behavior patterns tend to become established and are difficult to change” (Silverstein). It is very important to assess both the risk factors and the strengths of the child and family at the time of diagnosis. This way, good habits can be built on and young patients can begin to be more responsible of their illness earlier.
Failure to acknowledge and plan for transition to adult health care may result in patients being “lost in transition”. Part of the real challenge is the transition from being an adolescent to being an adult. They’re undergoing numerous life transitions themselves, including from having a parent overseeing their care, particularly in type 1 disease, to having to oversee it themselves. “A healthy transition between childhood and adulthood is necessary and should occur between the ages 18-21” (Chaudhry). The transition into adulthood is already a difficult one biologically, emotionally, and psychologically.
“Attendance of young people at four diabetes services averaged 94% before transfer to an adult clinic, but fell to 57% 2 years after transfer (Kennedy)”. Patients may be facing issues regarding disruption of care and loss of health insurance as well as trying to develop self-sufficient disease management skills. When the stress of chronic illness is added on top of this, patients may face many issues. With a chronic illness, adolescents are often still heavily reliant on their families for physical, psychological, and financial support. Chronic illness and daily treatment regimens have negative implications for peer relationships owing to functional limitations. From early adolescence, young people with chronic disease report wanting greater engagement with health professionals, which includes wanting to see doctors alone for at least part of the consultation and wanting more confidentiality in health care.
(Sawyer). Adolescence is a period in which one is beginning to gain a sense of freedom and self reliance, leading into an adult life. With a chronic illness, adolescents are often still heavily reliant on their families for physical, psychological, and financial support. With the added burden of medication, doctors appointments, and self care, many adolescents struggle with the limitations that come with their illness. For example, diabetes, asthma, epilepsy, and JRA influence many aspects of daily life and require a lifelong process of self-care. The social aspect of a young person’s life is often very important to them.
Although, chronic illness requires specialized care that can sometimes take up time. Chronic illness and daily treatment regimens have negative implications for peer relationships owing to functional limitations, frequent interruptions of daily activities by treatment requirements, changed physical appearance, and altered lifestyle. Doctors must work towards better effective partnerships with adolescents and parents.To facilitate patients’ self-management, chronic disease experts have called for a “paradigm shift” in provider-patient relations from directive to more collaborative patient-provider interaction styles, with joint definition of problems, treatment goals, and management strategies. (Heisler).
Educational interventions need to be ongoing, with frequent telephone contact, and both in-person care. Physicians should focus on continuity: in their relationships with individual patients, between their patients and other clinicians. Most people living with chronic illness face many challenges to achieving control, and they all require long-term lifestyle adjustments. “The challenge for doctors is to maintain awareness of adolescent development in our interactions with young people with chronic illness and their parents so that, in time, these young people become their own best advocates” (Sawyer). Many adolescents struggle with the limitations that come with their illness.
In order to receive better outcomes with patients, doctors who see young people with chronic illness are urged to consider how they can promote better self management practices. It has been noted that compliance is affected by the quality of the interaction between the patient and the person in charge of the treatment, by the functioning of the health care system, and also by the patient’s ability to influence treatment. (KyngAs). Primary care providers face a significant challenge in helping patients manage their chronic conditions to improve their health and quality of life. Most of the self-management literature has focused on older populations, in which the burden and costs of chronic illness and disability are increasingly evident. Chronic illness is a serious matter in the United States.
There are several reasons why patients may not be following proper management protocol. Diagnosis of a chronic illness can be greatly life changing. Patients may be facing issues regarding disruption of care and loss of health insurance, as well as trying to develop self-sufficient disease management skills. This can even be more difficult for teenagers who are already going through their own changes. A healthy transition between pediatric treatment and adult treatment is necessary and should occur between the ages 18-21. As of right now chronic illness is the leading cause of death in the United States.
With the resources available to patients, this should not be the case. Chronic illness is a problem that is growing at a fast rate, and while it is important to prevent chronic illnesses from occurring, it is also important that proper management is established to decrease the fatal outcomes.