WHOQOL tools

What is Quality of Life?

The constitution of the World Health Organization (WHO) defines health as “A state of complete physical, mental and social well-being not merely the absence of disease and infirmity”. A full and accurate measurement of the health of a country requires more than experts making inferences from socioeconomic indicators, more than collecting and analysing morbidity and mortality statistics and more than the collective opinions by doctors about the health and welfare of their patients. While such assessments are valuable in helping gauge quality of life they are not sufficient. They miss that important dimension of what people think and feel about themselves, their subjective perception of their health and well-being.

WHO also defines quality of life “as an individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns. It is a broad ranging concept affected in a complex way by the person’s physical health, psychological state, personal beliefs, social relationships and their relationship to salient features of their environment”.

It is possible to be satisfied and happy with one’s life, though disabled or incapacitated by illness or disease. One may be missing a limb, be blind, have asthma, have an intellectual impairment, or even have a combination of these disabilities but still feel satisfied with life and health. Therefore it follows that people themselves should be asked whether they are satisfied with their health and wellbeing. This is the basic rational and assumption of the WHOQOL (World Health Organization Quality Of Life) measurement instruments. They are tools designed to measure the extent to which people, irrespective of their health status and what the impersonal statistics infer, feel satisfied with their health and well-being.

Quality of life as defined by WHO is a multifaceted concept. The instruments produce a descriptive profile of a person quality of life, not a single score or index.

Table of WHOQOL_BREF

* = New Zealand national items

Uses of the WHOQOL instruments

A. To investigate health care practice, health and health related services.
WHOQOL tools are used in health care to help the professional make the best choices for patients and clients and monitor any change in quality of life over the course of treatment and recovery. Furthermore, by increasing the understanding of how a health problem affects a patient or client’s QOL, the interaction between the service provider and service user may be improved. Measuring QOL is now a common practice in the assessment of the effects of pharmaceutical medicines and the evaluation of treatments.

The WHOQOL provides an invaluable supplementary tool in the appraisal of health care, rehabilitation and recovery services by presenting an appraisal of patient/client’s perceptions of their QOL and the health care service delivery. Thus WHOQOL tools can be used in health care audit. Similarly the WHOQOL has helped measure the effects of existing health care policy and changes resulting from changes in health policy. The WHOQOL compliments morbidity and mortality data in the provision of consumer subjective perceptions about their health
The WHOQOL tools have been used extensively in research by providing insights into the effects of diseases and disorders, particularly revealing how they affect subjective well-being over a wide range of areas.

B.  To investigate the impact of the environment and living changes and circumstances on health related quality of life.
Environmental change and social circumstances affect quality of life and health both directly and indirectly. Measuring any change in QOL after a purposeful change in the physical or social environment of a person or a community can help in the re-examination and justification of policy and plans that lead to the change. To know in what ways quality of life is affected by such change and the extent these effects are perceived as they impact health related quality of life facilitates accountability. To maintain and improve the quality of life of the people are surely major goals of all responsible government. To assess the quality of life of a group of like people may suggest to government where priority in response may lie and suggest where need is perceived by the citizenry to be greatest. Health is but one, albeit a major dimension of life. The WHOQOL together with other assessments provides a measure of need and impact of environmental and social engineering and change.

The WHOQOL Family of Quality of Life Instruments

The scales have been developed internationally by the World Health Organization (WHO) in collaboration with many member states.  The scales have been administered to many thousands of people in over 45 countries world-wide and in many national languages. The WHOQOL instruments are well validated and available free of charge to professionals.

Core Generic Instruments

The WHOQOL-100 contains 100 questions covering 25 facets or dimensions of quality of life that have a high level of international consensus. There is an optional appendix of questions about the importance of these facets to quality of life (Importance Questions). A shorter form of 26 items - the WHOQOL BREF - has been developed and we have developed a NZ version which contains an additional 5 items. The generic versions of the WHOQOL have good properties of reliability and validity.

Modules for Specific Conditions or Diseases

Additional modules to the WHOQOL developed to assess with greater precision quality of life in areas of special research interest. These include the WHOQOL – HIV/AIDS to assess the QOL of people infected with or affected by HIV; the WHOQOL – SRPB module to assess with greater detail the spirituality, religiousness and personal beliefs domain not uncommon in studies of people who have chronic illness or terminally ill; the WHOQOL-OLD to measure quality of life of the elderly; and the WHOQOL-DIS for use in assessment with the mentally or physically disabled. Each module is used in conjunction with the core WHOQOL-100 or WHOQOL-BREF. There are no charges to use them with the exception of the use of any of the tools in sponsored research and grants.  To use the WHOQOL in New Zealand users are asked to register with the group.

Development of the Generic WHOQOL

WHO began in the early 1990s to develop a multifaceted questionnaire to assess health related quality of life, described as the missing dimension in appraising health. Two instruments, the WHOQOL-100 and the shorter version the WHOQOL-BREF, were developed in 15 field centres in 14 diverse countries, all centres working simultaneously. The following steps were taken:

1. Health related quality of life was defined by an expert international review where it was also agreed upon the approach to be taken to formulate the basic instrument.
2. Next, the concept was explored across cultures by expert review and focus group discussion in national languages. After translation and back translation this activity produced definitions for 5 proposed quality of life domains, 24 sub domains or facets and a global pool of items. At this stage a sixth dimension later called spirituality, religiousness and personal beliefs emerged. This phase produced a global set of items.
3. The next stage in development was the administration of a pilot questionnaire in national languages in the 15 field centres to approximately 250 patients and 50 healthy people in each centre. The importance of each candidate item was assessed. Those items of low importance overall were dropped from consideration for the proposed core WHOQOL instrument, but some statements not of universal value were retained by some countries for later development as national items to be used by them in conjunction with the core tool. This phase produced a 300 item standardised questionnaire.
4. Next a series of smaller studies involving clear and homogeneous populations were undertaken. Subsequent item analysis reduced the item pool to 100 questions. These studies used other national and international quality of life measures to help further establish the psychometric properties of the WHOQOL. Four standardised cross-nationally equivalent response scales were also tested for the dimensions of frequency, intensity, capacity and evaluation which reflect an appropriate state of behaviour for each question.
5. The WHOQOL –BREF (containing 26 items) was next developed using data from the field trial version of the WHOQOL-100 in order to have a briefer version that could be used where the 100 item basic tool is not practicable.  4 domains emerged from the structural analysis. The countries that developed additional national questions scored these separately from the generic scales.
   
   The WHOQOL tools have been rigorously tested in each of the collaborating field centres and independent researchers to assess both validity and reliability. Results are most satisfactory and attest to a highly reliable and valid instrument when used for appropriate purposes. A summary of these data are presented in the User manual obtainable form AUT.The responsiveness of the WHOQOL to change has also been assessed and found satisfactory.

Development of the NZ WHOQOL-BREF.

Following the same steps used by WHO in developing the WHOQOL-100, a New Zealand version of the WHOQOL-BREF has been developed because the shorter BREF is used far more often globally than the 100 item version.

Thirteen focus groups totalling 61 people representing health experts, care givers and sick people rated the importance of the existing WHOQOL facets and suggested additional areas they considered important to NZers. These importance questions were sent out to 2000 addresses on the electoral role. 29 % responded. The most important items were then transposed into questions in the WHO format, tested for their readability and reliability and mailed to 3000 NZers on the electoral role. Item and structural analyses confirmed the importance and structure of the  WHOQOL-BREF core items and 5 additional items emerged as NZ national items to produce a NZ WHOQOL-BREF with a total of 31 items. The last 5 items on the NZ WHOQOL-BREF scale are the NZ national items.

The NZ WHOQOL Group

The New Zealand WHOQOL Group is an association of researchers and health practitioners interested in the measurement of Quality of Life (QOL) using the WHOQOL as the primary tools.

Located at the Auckland University of Technology, Auckland, New Zealand, the group includes members from organisations across the country. The group originally focused on the family of instruments developed by the World Health Organisation (WHO). It now supports other New Zealand researchers and health professionals not only in applying these instruments in practice but also in consulting and advising on the value and use of other health outcome assessment tools and practises.