About our Quality of Life survey

We encourage you to create an account, so that you can:

• Store your own information related to your condition and symptoms.
• Track your progress every time you take the survey. Your progress shows up in your personal dashboard. Your personal dashboard also provides easy access to your Medical Document and Note for my Doctor.
• Receive emails every couple of weeks to remind you to take the survey.
• Print out a PDF of your survey results over time and share it with your doctor or other healthcare practitioner.

Quality of life surveys have been used by healthcare practitioners in their clinical practice, usually through a paper-based questionnaire scale. They are not widely used, as they can be time-consuming to administer and interpret. And yet, patient quality of life and satisfaction with care are essential elements of patient-centered care.

There is a movement towards measuring patient-centered metrics, such as patient satisfaction, activation, and subjective quality of life – coming directly from the patient.

Dr Chris Gibbons at the University of Cambridge Psychometrics Centre developed the adaptive WHOQOL-100 survey. The WHOQOL-100 survey is a tool completed by patients to help assess their health-related quality of life. It asks questions related to physical, psychological, social, and environmental quality of life.

The survey is 75% shorter, has higher reliability, and provides instant feedback to you. Cambridge used both computer adaptive testing (CAT) and item response theory (IRT), as well as its open-source Concerto platform, to create the adaptive WHOQOL-100 survey.

Background on the development of the adaptive survey: Administering surveys using a computer adaptive testing (CAT) algorithm is a quicker and potentially more relevant and accurate method of assessing patient reported outcomes. In addition, item response theory (IRT) models have been used in this adaptive WHOQOL-100 survey. IRT models allow patient-reported outcomes to be accurately administered using any number or combination of items from the original scale. This allows the CAT algorithms to select the most relevant and informative items for the individual taking the test.

By removing unnecessary questions using IRT, and ‘intelligently’ administering the CAT algorithms, the QOL survey will be more reliable (more precise) and more efficient (fewer number of items to be administered).

The survey takes between 10 and 15 minutes to complete.

The survey should be taken every two (2) weeks. It asks you to think about your life over the last two weeks.

The WHOQOL-100 survey produces scores relating to particular aspects of quality of life (e.g. positive feelings, social support, financial resources), scores relating to larger domains or areas (e.g. physical, psychological, social relationships), and a score relating to overall quality of life and general health. The adaptive WHOQOL-100 survey does not produce a score relating to overall quality of life and general health.

No, there is no total score. Your score is calculated within each domain (area), on a 0 to 100 scale.

It is important to share your score with your doctor, as well as how it changes over time.

The survey will provide your doctor with valuable information that can indicates areas in which you are most affected, and help your doctor make the best choices in your care.

In addition, the survey measures changes in your qualify of life over the course of taking medical cannabis to treat your condition and symptoms. This would help your doctor understand how your condition and symptoms are affecting your quality of life, and may lead to more comprehensive health care.

If your score is low in one of the domains (physical, psychological, social, and environmental quality of life (QOL)), contact your doctor.

Higher scores indicate a higher quality of life.

The World Health Organization Quality of Life survey (WHOQOL-100) is a tool completed by patients to help assess their health-related quality of life. It asks questions related to different areas (referred to as ‘domains’) of quality of life, such as:

1. Physical health (questions related to energy and fatigue; pain and discomfort; sleep and rest)
2. Psychological health (questions related to body image and appearance; negative or positive feelings; self-esteem; thinking, learning, memory and concentration)
3. Level of independence (questions related to mobility; activities of daily living; dependence on medications and medical aids; work capacity)
4. Social relations (questions related to personal relationships, social support, sexual activity)
5. Environment (questions related to financial resources; physical safety and security; home environment; available health and social care)
6. Spirituality, religion, personal beliefs

The WHOQOL-100 survey is a 100-question assessment; the WHOQOL-BREF is an abbreviated 26 item survey.

The survey is rated on a five-point scale (1 to 5).

Below are examples of different areas (domains) and aspects in the WHOQOL survey. The adaptive WHOQOL-100 survey includes questions from four of the domains.

Physical area (domain)

Examples include:

• Pain and discomfort. This aspect explores unpleasant physical sensations experienced by you and the extent to which these sensations are distressing and interfere with your life. Questions include the control you have over the pain and the ease with which relief form pain can be achieved.
• Energy and fatigue. This aspect explores the energy, enthusiasm, and endurance that you have in order to perform the necessary tasks of daily living, as well as other chosen activities, such as recreation. Questions extend from reports of disabling tiredness to adequate levels of energy, to feeling really alive.
• Sleep and rest. This aspect concerns how much sleep and rest, and problems in this area, affect your quality of life. Sleep problems can include difficulty going to sleep, waking up during the night, waking up early in the morning and being unable to go back to sleep, and not feeling refreshed from sleep.

Psychological area (domain)

Examples include:

• Positive feelings. This aspect examines how much you experience positive feelings of contentment, balance, peace, happiness, hopefulness, joy, and enjoyment of the good things in life. Your view of, and feelings about the future are seen as an important part of this aspect.
• Thinking, learning, memory, and concentration. This area explores your view of your thinking, learning, memory, concentration, and ability to make decisions.
• Self-esteem. This aspect examines how you feel about yourself, ranging from feeling positive to feeling extremely negative about yourself. Questions likely relate to a range of areas such as how you are able to get along with other people, family relations, sense of dignity and self-acceptance, among others.
• Body image and appearance. This aspect examines your satisfaction with the way you look and the effect it has on your self-concept.
• Negative feelings. This aspect concerns how much you experience negative feelings, and considers how distressing any negative feelings are and their impact on your day-to-day functioning.

Level of independence

Examples include:

• Mobility. This aspect examines your view of your ability to get from one place to another, to move around the home, move around the work place, etc.
• Activities of daily life. This aspect explores your ability to perform usual daily living activities, including self-care.
• Dependence on medication. This examines your dependence on medication or alternative medicines to support your physical and psychological well-being.
• Working capacity. This examines your use of energy for work (includes paid work, unpaid work, volunteer work, full-time study, care of children and household duties).

Social Relationships

Examples include:

• Personal relationships. This aspect examines the extent to which you feel the companionship, love, and support they desire from intimate relationship(s) in your life. It includes the ability and opportunity to love, to be loved, and to be intimate with others both emotionally and physically.
• Social support. This aspect examines how you feel the commitment, approval, and availability of practical assistance from family and friends.
• Sexual activity. This concerns your urge and desire for sex, and the extent to which you are able to express and enjoy appropriately.

Environmental

Examples include:

• Physical safety and security. This aspect examines your sense of safety and security from physical harm.
• Home environment. This aspect explores the principal place where you live and the way this impacts on your life.
• Financial resources. This examines your view of how your financial resources, and the extent to which these resources, meet the needs for a healthy and comfortable life style.
• Health and social care. This examines your view of the health and social care in the near vicinity, as well as the completeness of care.
• Acquiring new information and skills. This explores your opportunity and desire to learn new skills, acquire new knowledge, and feel in touch with what is going on.
• Recreation and leisure. This explores your ability, opportunities, and inclination to participate in leisure and relaxation.
• Physical environment (pollution/noise/traffic/climate). This examines your view of your environment.
• Transport. This examines your view of how available or easy it is to find and use transport services to get around.

Spiritual/Religion/Personal Beliefs

• This area explores your personal beliefs and how these affect quality of life. For example, helping you cope with difficulties in your life, providing you with a sense of well-being, addressing people with different religious beliefs, etc.

The WHOQOL survey was developed cross-culturally, in 15 different centres around the world. The important aspects of qualify of life and ways of asking about quality of life were drafted on the basis of statements made by patients with a range of diseases, by well people and by health professionals in a variety of cultures.

Also, the WHOQOL survey places primary importance on the perception of the patient. Most surveys in medicine are done by healthcare practitioners examining a patient, and obtaining lab results. The WHOQOL focuses on an individual’s own views of their well-being.

Finally, the WHOQOL survey was developed based on extensive research and over several years, to ensure that it accurately measures the issues that are important to a person’s quality of life, and that is does so reliably.

The World Health Organization (WHO) was founded in 1948 and works worldwide to promote health, keep the world safe, and serve the vulnerable. The WHO aims to achieve better health for everyone, everywhere. First set up as the lead agency for international health in the new United Nations system, WHO works with 194 member countries across 6 regions, and from more than 150 offices. www.who.int.

Psychometrics is the science of measuring mental capacities and processes. It objectively measures skills and knowledge, abilities, attitudes, personality traits, educational achievements, etc.

In general, psychometrics refers to the field in psychology and education that is devoted to testing, measurement, assessment, and related activities.