Quality of life (healthcare)
In healthcare, quality of life is an assessment of how the individual's well-being may be affected over time by a disease, disability or disorder.
Measurement
Early versions of healthcare-related quality of life measures referred to simple assessments of physical abilities by an external rater or even to a single measurement.The current concept of health-related quality of life acknowledges that subjects put their actual situation in relation to their personal expectation. The latter can vary over time, and react to external influences such as length and severity of illness, family support, etc. As with any situation involving multiple perspectives, patients' and physicians' rating of the same objective situation have been found to differ significantly. Consequently, health-related quality of life is now usually assessed using patient questionnaires. These are often multidimensional and cover physical, social, emotional, cognitive, work- or role-related, and possibly spiritual aspects as well as a wide variety of disease related symptoms, therapy induced side effects, and even the financial impact of medical conditions. Although often used interchangeably with the measurement of health status, both health-related quality of life and health status measure different concepts.
Activities of daily living
Activities of Daily Living are activities that are oriented toward taking care of one's own body and are completed daily. These include bathing/showering, toileting and toilet hygiene, dressing, eating, functional mobility, personal hygiene and grooming, and sexual activity. Many studies demonstrate the connection between ADLs and health-related quality of life. Mostly, findings show that difficulties in performing ADLs are directly or indirectly associated with decreased HRQOL. Furthermore, some studies found a graded relationship between ADL difficulties/disabilities and HRQOL- the less independent people are at ADLs- the lower their HRQOL is. While ADLs are an excellent tool to objectively measure quality of life, it is important to remember that Quality of life goes beyond these activities. For more information about the complex concept of quality of life, see information regarding the disability paradox.In addition to ADLs, instrumental activities of daily living can be used as a relatively objective measure of health-related quality of life. IADLs, as defined by the American Occupational Therapy Association, are "Activities to support daily life within the home and community that often require more complex interactions than those used in ADLs". IADLs include tasks such as: care for others, communication management, community mobility, financial management, health management, and home management. Activities of IADLS includes: grocery shopping, preparing food, housekeeping, using the phone, laundry, managing transportation/finances. Research has found that an individual's ability to engage in IADLs can directly impact their quality of life.
Pharmacology for older adults
Elderly patients taking more than five medications increases risk of cognitive impairment, and is one consideration when assessing what factors impact QoL, ADLs, and IADLs of older adults. Due to multiple chronic conditions, managing medications in this group of people is particular challenging and complex. Recent studies showed that polypharmacy is associated with ADL disability due to malnutrition, and is a risk factor for hospital admission due to falls, which can have severe consequences on a person's quality of life moving forward. Thus, when assessing an elderly person's quality of life, it is important to consider the medications an older patient is taking, and whether they are adhering to their current prescription taking schedule.Occupational Therapy's Role
Occupational therapists are global healthcare professionals who treat individuals to achieve their highest level of quality of life and independence through participation in everyday activities. OTs are trained to complete a person-centered evaluation of an individual's interests and needs, and tailor their treatment to specifically address ADLs and IADLs that their patient values. In the AOTAs most recent vision statement they explicitly state that OT as an inclusive profession works to maximize quality of life through the effective solution of participation in everyday living. To learn more about occupational therapy, see the Wikipedia page dedicated to the profession.
Special Considerations in Palliative Care
HRQoL in patients with serious, progressive, life-threatening illness should be given special considerations in both the measurement and analysis of HRQoL. Oftentimes, as level of functioning deteriorates, more emphasis is put on caregiver and proxy questionnaires or abbreviated questionnaires. Additionally, as diseases progress, patients and families often shift their priorities throughout the disease course. This can affect the measurement of HRQoL as, oftentimes, patients change the way they respond to questionnaires which results in HRQoL staying the same or even improving as their physical condition worsens. To address this issue, researchers have developed new instruments for measuring end-of-life HRQoL that incorporate factors such as sense of completion, relations with the healthcare system, preparation, symptom severity, and affective social support. Additionally, research is being conducted on the impact of existential QoL on palliative care patients as terminal illness awareness and symptom burden may be associated with lower existential QoL.Examples
Similar to other psychometric assessment tools, health-related quality of life questionnaires should meet certain quality criteria, most importantly with regard to their reliability and validity. Hundreds of validated health-related quality of life questionnaires have been developed, some of which are specific to various illnesses. The questionnaires can be generalized into two categories:Generic instruments
- CDC HRQOL–14 "Healthy Days Measure": A questionnaire with four base questions and ten optional questions used by the Centers for Disease Control and Prevention .
- Short-Form Health Survey : One example of a widely used questionnaire assessing physical and mental health-related quality of life. Used in clinical trials and population health assessments. Suitable for pharmacoeconomic analysis, benefiting healthcare rationing.
- EQ-5D a simple quality of life questionnaire.
- AQoL-8D a comprehensive questionnaire that assesses HR-QoL over 8 domains - independent living, happiness, mental health, coping, relationships, self-worth, pain, senses.
- King's Health Questionnaire
- International Consultation on Incontinence Questionnaire-Short Form in urinary incontinence, the LC -13 Lung Cancer module from the EORTC Quality of Life questionnaire library, or the Hospital Anxiety and Depression Scale.
- Manchester Short Assessment of Quality of Life: 16-item questionnaire for use in psychiatric populations.
- ECOG, most commonly used to evaluate the impact of cancer on people.
- NYHA scale, most commonly used to evaluate the impact of heart disease on individuals.
- EORTC measurement system for use in clinical trials in oncology. These tools are robustly tested and validated and translated. A large amount of reference data is now available. The field of HRQOL has grown significantly in the last decade, with hundreds of new studies and better reporting of clinical trials. HRQOL appears to be prognostic for survival in some diseases and patients.
- WHO-Quality of life-BREF : A general Quality of life survey validated for several countries.
- The Stroke Specific Quality Of Life scale SS-QOL: It is a patient-centered outcome measure intended to provide an assessment of health-related quality of life specific to patients with stroke only. It measures energy, family roles, language, mobility, mood, personality, self care, social roles, thinking, upper extremity function, vision and work productivity.
- In rheumatology, condition specific instruments have been developed such as RAQoL for rheumatoid arthritis, OAQoL for osteoarthritis, ASQoL for ankylosing spondylitis, SScQoL for systemic sclerosis and PsAQoL for people with psoriatic arthritis.
- MOS-HIV was developed specifically for people living with HIV/AIDS.
Utility
When it is used as a longitudinal study device that surveys patients before, during, and after treatment, it can help health care providers determine which treatment plan is the best option, thereby improving healthcare through an evolutionary process.
Importance
There is a growing field of research concerned with developing, evaluating, and applying quality of life measures within health related research, especially in relation to Health Services Research. Well-executed health-related quality of life research informs those tasked with health rationing or anyone involved in the decision-making process of agencies such as the Food and Drug Administration, European Medicines Agency or National Institute for Clinical Excellence. Additionally, health-related quality of life research may be used as the final step in clinical trials of experimental therapies.The understanding of Quality of Life is recognized as an increasingly important healthcare topic because the relationship between cost and value raises complex problems, often with high emotional attachment because of the potential impact on human life. For instance, healthcare providers must refer to cost-benefit analysis to make economic decisions about access to expensive drugs that may prolong life by a short amount of time and/or provide a minimal increase to quality of life. Additionally, these treatment drugs must be weighed against the cost of alternative treatments or preventative medicine. In the case of chronic and/or terminal illness where no effective cure is available, an emphasis is placed on improving health-related quality of life through interventions such as symptom management, adaptive technology, and palliative care. Another example of why understanding quality of life is important is during a randomized study of 151 patients with metastatic non-small-cell lung cancer who were split into obtaining early palliative and standardized care group. The earlier palliative group not only had better quality of life based on the Functional assessment of Cancer Therapy-Lung scale and the Hospital Anxiety and Depression Scale, but the palliative care group also had less depressive symptoms despite having received less aggressive end-of-life care and longer median overall survival than the standard group. By having a quality of life measure, we are able to evaluate early palliative care and see its value in terms of improving quality of care, reduced aggressive treatment and consequently costs, and also greater quality/quantity of life.
In the realm of elder care, research indicates that improvements in quality of life ratings may also improve resident outcomes, which can lead to substantial cost savings over time. Research has shown that evaluating an elderly person's functional status, in addition to other aspects of their health, helps improve geriatric quality of life and decrease caregiver burden. Research has also shown that quality of life ratings can be successfully used as a key-performance metric when designing and implementing organizational change initiatives in nursing homes.