Adaptation and Validation of the World Health Organization Quality of Life - BREF (WHOQOL-BREF) for People with Aphasia

BackgroundIt is essential to consider the well-being and quality of life (QoL) of the person as part of an effective intervention in health. To this end, the World Health Organization developed an instrument to assess the QoL, the World Health Organization Quality of Life - BREF (WHOQOL-BREF). However, it is not adapted to the comprehension and expression difficulties a person with aphasia must face.AimsTo create and validate a version of the WHOQOL-BREF, Portuguese version, which is adapted to the needs of people with aphasia (PWA).Methods & ResourcesFor the adaptation and validation phase, two participatory workshops were held with a group of five PWA and then, individual interviews were carried out with the same experts. For the validation phase (concurrent validity and assessing group differences), the study included a sample of 45 people (15 PWA and 30 neurologically healthy participants - NHP). To evaluate the test-retest (intra-rater) reliability, the t-test was used, and the Pearson correlation was calculated. To compare the two groups (PWA and NHP), the Chi-Square Test was used for categorical variables and the independent t test (or the Mann-Whitney test) for the numerical variables.Outcomes & ResultsThe results obtained are in line with what is reported in the literature regarding the aphasia-friendly adaptions of health assessment instruments: It is relevant to provide graphic support and to highlight specific information. There were no differences between test-retest (moderate to strong correlations between the two testing points: 0.56-0.79). Contrary to expectations, PWA did not present significant differences in QoL when compared to NHP, except for the physical domain (p=0.01). During concurrent validation, the following correlation values were obtained in the specific domains of WHOQOL-BREF and SAQOL-39: WHOQOL-BREF Physical/ SAQOL-39 Physical (0.55) and WHOQOL-BREF Physical/ SAQOL-39 Communication (0.53).ConclusionThe adaptations carried out to facilitate the understanding and expression of PWA and the aphasia-friendly support materials produced for WHOQOL-BREF were well received by a group with mild aphasia and may be useful for the broader population of PWA. The WHOQOL-BREF could be used without communicative support by PWA, facilitating the collection of clinically relevant data about this population.