Adapting "quality of life" measures to a local audience

Evaluating the reliability, validity and minimally important difference of the Taiwanese version of the diabetes quality of life (DQOL) measurement
Original source: Health and Quality of Life Outcomes 2008, 6:87
Authors: I-Chan Huang (corresponding author), Jung-Hua Liu, Albert W Wu, Ming-Yen Wu, Walter Leite, Chyng-Chuang Hwang
Publication date: 28 October 2008
DOI (digital document ID): 10.1186/1477-7525-6-87
Requires subscription? No
Publicly-available abstract: Yes

Synopsis:
The authors' goal was to develop ways to measure Health-Related Quality of Life (HRQoL) in the Chinese language, primarily for use in Taiwan. They translated a standard survey (called DQOL) to measure diabetes-related HRQoL, put it to a test, and tried to find out where it worked and where it needed tweaking.

There are a number of standards for measuring HRQoL in general, and diabetes-related quality-of-life in particular. One issue is that even among the diabetes-specific surveys, there are differences: some look at quality of life based on energy, mobility, ability to function, and social aspects along with the issues of testing and maintaining control; others look at the effect of medical treatment and satisfaction with that treatment, as well as concern about eventual development of complications. In order to be meaningful, the surveys have to pose questions that have meaning within the culture in which they are presented, and which put the patient at enough ease to answer truthfully. (For example, questions about sexual activity will not be answered in a society where that discussion is taboo.) One aspect of this is rewriting the survey in the local dialect.

A major issue with health-related quality of life surveys is determining what the patient means, and way he perceives the care he is receiving, and what changes to his responses mean over the course of time. There are several methods of statistically analyzing these responses and comparing them to an "impartial" standard -- physical measurements of the patient's health.

The clinical measurements used to validate the survey included HbA1c (a measurement of average long-term blood glucose levels), blood glucose levels two hours after meals ("two-hour postprandial"), fasting blood glucose levels, and the presence of some of the most common complications of diabetes (neuropathy - loss of sensation; foot ulcers, infections, and amputations; cardiovascular issues such as heart disease; and cerebrovascular (brain circulation) issues such as stroke).

In addition, two other diabetes-related quality of life surveys were translated and made more appropriate to Taiwanese culture, and used to verify the results of the Taiwan-adapted DQOL and to make those results meaningful to researchers and public health professionals.

The authors discuss their methods of translating and localizing the DQOL, their analysis of the data, and the limitations of their research.

Reliability:
The authors are all professionals in either public health or medicine, and interested in how patients perceive their quality of life.
The sample used was relatively small, but of a reasonable size to test the effectiveness of the surveys being developed; however, all of the respondents were from the same health center in Taiwan, and only four had Type 1 diabetes. The authors also noted that this analysis was done over a cross-section of patients at one time, and one of the real strengths of measuring quality of life is how it is perceived to change over time.

Practical Applications:
This is a first step in being able to understand, from the Taiwanese patient's viewpoint, the effects of diabetes on his quality of life. Applying this information to medical practice will help improve the level of care, and the effect of care, provided to these patients.

This synopsis was based on the entire article.