Coping with diabetes in adults
Maintaining quality of life (QOL) for people with diabetes is an important challenge in diabetes treatment. Quality of life is a multi-dimensional concept representing an individual’s subjective evaluations of physical, emotional and social well-being. Specific to diabetes, quality of life refers to the impact diabetes and its treatment has on an individual’s physical and psychosocial functioning, health beliefs, and perceived well-being. People value feeling well and most individuals place high priority on maintaining and improving the way they feel; however, for people with diabetes, the rigorous demands of following a complex self-care regimen combined with the risk for developing complications may affect their health beliefs and feelings of well-being. Conditions commonly associated with diabetes such as distress, major depression and elevated depressive symptoms also negatively impact quality of life. Thus, a person’s diabetes-related quality of life is subject to change over time as their disease progresses.
Figure 1. Four Phases during the Course of Diabetes that Impact Quality of Life, Distress, and Coping with DiabetesPeople with diabetes face major stressors or crises at different points during the course of their disease. Individuals often struggle to cope effectively with stressors or crises, which may be reflected in new or existing social and emotional difficulties that further hamper individuals’ efforts to maintain self-care behaviors, glycemia and overall quality of life. Four phases representing different stressors or crises warrant particular mention: 1) Onset of diabetes, 2) Health maintenance and prevention, 3) Onset of complications, and 4) Complications dominate(1) (see Figure 1). Treatment approaches and support by the treatment team typically differ across these phases.
Often, individuals may respond to stressors in one of two ways. Individuals may operate at a high level of vigilance with a renewed interest in their self-care practices, thereby demonstrating self-controlled coping strategies. Conversely, individuals may approach their self-management with a more fatalistic or defeatist attitude, reasoning that there is nothing they can do to control the progression of their diabetes and/or related complications so any action on their part feels unproductive or pointless. Fatalistic thinking, a type of emotion-based coping, inhibits a person’s motivation to perform self-care behaviors. Individuals expressing a fatalistic attitude toward their diabetes self-management perform fewer recommended behaviors resulting in diminished self-care, higher hemoglobin A1c values and poorer quality of life. In a mediation model, anger coping style promoted poorer glycemic control in diabetes patients by provoking greater diabetes-related distress. Other associated factors (Table 1) may influence the response to stressors. A longitudinal study found that baseline resilience, diabetes-related emotional distress and their interaction predicted glycemic control at one year. Further, low resilience was associated with fewer diabetes self-care behaviors in the presence of increasing distress. For example, individuals who employ emotion-based coping strategies (e.g., anger, denial, anxiety) are more likely to have poorer glycemic control while individuals who employ problem-based or self-controlled coping strategies (e.g., pragmatism, stoicism) are more likely to have better glycemic control. Therefore, how an individual copes with diabetes is related to their quality of life along with their self-care and glycemia. Thus, stressors or crises can negatively impact an individual’s quality of life and evoke feelings of distress, anxiety, and depression. Assessment of quality of life and coping is critical in diabetes treatment because both may powerfully predict an individual's ability to manage his/her disease and follow treatment recommendations.
Table 1. Personal Characteristics that Influence Response to Crises, Diabetes Distress and Quality of Life
|Resilience||An individual’s capacity to maintain psychological and physical well-being in the face of adversity|
|Executive functions (problem-solving, planning and organization skills)||Higher level cognitive functions that allow individuals to engage in independent, purposive and flexible behaviors when faced with new situations and stressors |
|Emotional coping style||Coping response that includes anger, denial, anxiety|
|Self-controlled coping style||Problem-based coping strategies (e.g., pragmatism, stoicism, fatalistic or defeatist attitude)|
|Social support||Emotional and other support provided by family members, friends, and social or religious/church groups in times of crises and in everyday life. Importantly, negative family or social support may lead to increased distress and deterioration in quality of life.|
Researchers and clinicians need to measure key outcomes that are important for people living with diabetes. The most common outcomes include hemoglobin A1c levels, diabetes self-care and diabetes quality of life. Other important outcomes for researchers and clinicians to consider include depressive symptoms, diabetes-related distress, diabetes symptoms and coping styles. Several instruments measure these outcomes specific to people with diabetes. Table 2 provides a description of these instruments.
|Table 2. A sample of Common Instruments Used to Assess Diabetes Quality of Life, Depression, Distress, Coping Styles and Diabetes Self-Efficacy|
|─ Diabetes Quality of Life (DQOL) measure was developed for use during the Diabetes Complications and Control Trial (DCCT). The DQOL has 46 core items rated on a five-point Likert scale and yields a total score with five subscales (satisfaction, general health, impact of treatment, future effects of diabetes, and social effects). Scores are converted to a 100 point scale with 100 representing highest quality of life and zero representing lowest quality of life. The psychometric properties of the DQOL are well-established and it has been validated for use with both type 1 and type 2 diabetes patients.|
|─ Short Form (SF-36) Health Survey is a 36-item measure of health-related quality of life. The survey yields eight domains of functional health and well-being: physical functioning, role limitations due to physical problems, vitality, bodily pain, social functioning, role limitations due to emotional problems, mental health, and general health, which are summarized into a physical component score and a mental component score. All scores range from zero (worst health) to 100 (best health).|
|─ Diabetes Symptom Checklist-Revised (DSC-R) is a well-validated 34-item measure of diabetes-related symptom burden developed for use in patients with type 2 diabetes. The DSC-R covers 8 symptom domains: hyperglycemia, hypoglycemia, ophtomologic, neuropathy - pain, neuropathy - sensory, psychological - cognitive, psychological fatigue, cardiovascular, and has excellent psychometric properties. It is widely used internationally.|
|─ Problem Areas in Diabetes (PAID) is an internationally widely used clinical tool and an outcomes measure to identify diabetes-related emotional distress. Twenty items cover a range of emotional issues common among people with type 1 or 2 diabetes. Higher scores indicate greater emotional distress. The PAID has high internal reliability (alpha=.95) and strongly correlates with both depression and self-care and is responsive to change over time. Validated short form versions have been developed.|
|─ Patient Health Questionnaire-9 (PHQ-9) is a 9-item scale derived from the full Patient Health Questionnaire. This instrument is useful for screening, diagnosing, monitoring, and measuring severity of depression. PHQ-9 scores of 5, 10, 15, and 20 correspond to mild, moderate, moderately severe, and severe depression. The PHQ-9 is brief and can be easily administered during a clinical appointment. This instrument is useful for assisting clinicians in diagnosing depression as well as selecting and monitoring treatment. Further, the PHQ-9 is available in a multitude of languages and has been validated in people with diabetes.|
|─ Coping Styles is a 15-item measure assessing emotional coping and self-controlled coping. Self-controlled coping strategies (e.g., stoicism, pragmatism) include statements of controlling one’s emotions and problem-solving to alleviate frustration. Emotion-based coping strategies (e.g., anger, impatience, anxiety) include angry statements, impulsive actions, anxious behaviors (nervous, worried, upset, difficulty relaxing) and avoidant behaviors (not doing something or giving up). Patients are asked to rate each item on a 4-point scale, ranging from “not at all like me” to “very much like me.” This measure is validated in diabetes populations.|
In conclusion, people with diabetes face numerous challenges to self-management that impact quality of life. Clinicians are well-positioned to recognize the cues of individuals struggling to cope with stressors and crises that arise from self-care difficulties and diabetes complications. Further, the examination of quality of life across various domains as an important health outcome is particularly relevant given the impact of chronic illnesses on everyday life and one’s ability to function. Further health agencies and organizations now recommend patient-reported outcome results in clinical trials. Thus, a comprehensive awareness and appreciation of quality of life and coping with diabetes are critical for both the medical and psychological care of diabetes.
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