Quality of Life quite simply means the evaluation of the positive and negative aspects of life. It can have a different meaning for every person and the interpretation depends on the personal, cultural and socioeconomic factors.
Essentially, Quality of Life literally means wellbeing.
Wellbeing includes the physical, mental, and social aspects of a personís life.
Physical well-being contributes to the vitality, health and energy of a person.
Mental well-being includes self-belief, self-satisfaction, self-acceptance and a balanced attitude.
Social well-being involves relationships between family, friends and integration in the community.
Wellbeing in all these areas contributes to a good Quality of Life.
In the context of health and disease, it is referred to as HRQOL or Health Related Quality of Life.
Relevance of Health Related Quality of Life
Chronic disease can leave a patient physically exhausted, mentally drained and socially isolated thus impacting his Quality of Life.
Health Related Quality of Life (HRQOL) becomes significant in patients with chronic disease especially when it is terminal and life limiting. Examples of these are end stage liver disease, end stage kidney disease, patients with cancer, AIDS among others. Here, the disease, the treatment and the co-morbid factors can affect the Quality of Life immensely because the impact of the disease is not just physical. It disturbs the patient emotionally and causes mood swings along with a feeling of anger and dejection. It can cause social isolation and role reversal in the family too. Spiritually the patient cannot find an answer as to why he is going through this.
Moreover, perception about Quality of Life also varies between people. Two patients may respond very differently to the same kind of disease and its treatment. The attitude of the patient, the social support and milieu also contributes to the wellbeing of the patient.
Importance of measuring HRQOL
HRQoL is a quantified response to a predesigned, self-administered questionnaire which covers the physical, emotional and social wellbeing of a patient with chronic disease and helps evaluate, assess and treat the patient better.
To help understand what the patient is going through and how he can be helped, there are questionnaires which are multidimensional and designed to take into account the patientís physical, mental, emotional and social wellbeing, which are called domains.
Each domain has questions pertaining to that area. The answers are noted and the results are quantified thus giving the physician an insight into the patient s Quality of Life.
This helps to understand the burden of disease or the impact of treatment on the patient. A well designed self-administered tool like a quantified questionnaire can help the physician understand and assess the patient better. The patientsí responses over a period of time help the physician in the line of treatment and counselling.
As time goes by and treatment continues, the expectations of a patient may change and goals need to be reset accordingly.
For example, in a patient who has just been diagnosed with cancer, the hope is for a cure. A patient who has had his treatment and is in remission hopes to prolong his life. A patient with advanced cancer and at the end of his life aspires to be independent for as long as he can and hopes to be free from pain and symptoms.
Thus when the hopes and aspirations of an individual are matched and fulfilled by the present experience, a good Quality of Life can be achieved.
When there is a wide gap between aspirations and present experience, the Quality of Life is poor.
To improve the Quality of Life, this gap between aspirations and what is possible has to be made as narrow as possible.
Today, with an increase in longevity of life and advanced medical treatment options, Quality of Life needs to move to the forefront in patient care. The healthcare professional should be aware of the impact of the disease and treatment on the patient and address these issues compassionately.
Tools for measuring Health Related Quality of Life
There are Generic tools used across diseases and populations along with Specific tools relevant only for particular disease conditions to assess HRQOL.
The Questionnaires used to study HRQOL can be Generic Type or Disease Specific Type.
The Generic Tool summarizes Quality Of Life across different illnesses, patients and population in various cultural and demographic settings. Examples are the WHO- BREF and the SF-36 tools.
Disease specific tools are designed for those with a specific disease. For example, there are questionnaires for diabetes, various types of liver disease, for different types of cancer and many others.
The generic and disease-specific tools can be used separately or together.
Uses of HRQOL studies
HRQOL studies are used to quantify and assess the patientís sense of physical, emotional social and spiritual well being and provide support in all the required areas during treatment in chronic disease. This helps to bridge the gap between patients aspirations and what can be done by the physician.
These HRQoL studies can be a good public health and surveillance marker to study the impact of chronic disease.
An analysis of these studies can help to guide interventions to improve health-related situations and prevent serious consequences.
HRQoL studies can thus help in understanding and treating the person with the disease and not just the disease.