“Blindness cuts us off from things, but deafness cuts us off from people,” goes a popular quote attributed to Helen Keller, a deaf-blind educator, humanitarian, and activist in the 20th century. Hearing loss limits people's communication abilities and, ultimately, their quality of life. “The problems of deafness,” Keller noted, “are deeper and more complex.”
In the case of hearing loss, pure-tone threshold measurement is important since it documents what sounds are not heard and when amplification is generally required as a first step (of course, distortion must be considered). Many young adults have thresholds of 10 dB HL, though 0 dB HL is an average. Those with thresholds at 5 dB HL are considered to have hearing loss. It has been known for decades that pure-tone thresholds do not represent all physiological changes in hearing. Many are hidden from measurements of pure-tone thresholds. We have examined the psychoacoustical consequences hidden from pure-tone thresholds, which can result in difficulties in temporal, frequency, and intensity processing and might suggest novel signal-processing strategies.1,2
Tinnitus also has significant consequences—maybe even more invisible than those of hearing loss—as evidenced by the numerous quality of life scales and the American Medical Association guidelines on compensation for occupational hearing loss. For example, the well-known World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0)3was developed as a way to assess and measure health and disability at the population level or for clinical practice. This culturally sensitive and widely used measure includes 36 items, along with various domains such as cognition, mobility, self-care, getting along, life activities, and participation, which is typically conducted in a 20-minute interview. However, one of its limitations is that it includes only one item on communication (“generally understanding what people say”). Its short version (with 12 items) does not even have a single question related to communication.
Our clinical experience with patients with cochlear implants (CIs) or tinnitus led us to believe that a quality of life questionnaire must address a variety of real-life issues. It is important to consider that people's goals and needs change as they get older and as life circumstances change like having or not having a job, a caregiver, etc. Perceptions of quality of life are influenced by factors such as expectations, age, gender, health conditions, and employment status, among others.
DEVELOPING A NEW QUESTIONNAIRE
In our frustration, we produced a new quality of life scale called the Meaning of Life4 (see Table 1) in an attempt to broaden the perspective of quality of life measures. This new questionnaire contains 23 items based on discussions with research and health care professionals (audiologists, physicians, and psychologists) and people with a variety of handicaps (hearing, vision, and mobility) on how they perceived quality of life. These individuals were asked what areas they felt were important in their lives, what things they felt were important in enjoying life, and what handicaps were experienced by people with disabilities. As audiologists, we wanted to ensure that the broad consequences of hearing loss were represented. We explored questions relevant to the day-to-day activities of participants from our CI and tinnitus research programs at the University of Iowa.
Our study included 312 adults, of which 196 participants had CIs and 116 had tinnitus. Comparing the scores on the Meaning of Life questionnaire as shown in Figure 1, low ratings were reported by the CI users for certain items such as 22 (i.e., “I am never depressed, sad, or anxious”) and 23 (i.e., “I never experience pain or discomfort”), suggesting that hearing loss contributes to social isolation, loneliness, frustration, and dependence on a caregiver. Tinnitus participants reported significantly more sleep problems (item 5) than those in the CI group. Scores were also significantly different when compared by age, with participants over 60 years old reporting lower ratings on memory (item 7) and concentration (item 10), compared with the younger participants (aged 59 years or less). Older participants also reported higher satisfaction with their financial situation (item 16) than the younger participants. Lastly, our results revealed that men and women regard satisfaction and happiness differently. Women had a significantly higher total quality of life ratings and higher ratings for friendship (item 9), positive outlook (items 20, 21), and satisfaction (item 15).
The present findings confirm that hearing ability and tinnitus directly affect the quality of life. Moreover, differences in specific areas of quality of life were observed between older and younger adults. The meaning of quality of life is influenced by prior and existing conditions. Consequently, it is necessary to interpret quality of life based on age, sex, and vocation. We hope that this work indicates a different direction to conceptualize and evaluate quality of life, especially as it relates to hearing and communication.
In conclusion, measures of quality of life should capture the broad, daily experiences that people face. Effectively designed tools can help audiologists and other health care professionals in better explaining the impact of hearing loss and tinnitus to society, including partners, children, legislatures, and the general public.
The Meaning of Life questionnaire was sensitive to the differences between those with CIs or tinnitus, as well as differences due to age and gender. It showed good validity when compared with other quality of life scales5 (EQ-5D, SF-6D). In future studies, we plan to administer this questionnaire to more diverse populations and consider aspects of ethnicity, employment status, and disability.
1. Tyler, R. S. (1979). Measuring hearing loss in the future. British Journal of Audiology
, 13(Suppl. 2): 29 40.
2. Tyler, R. S., Summerfield, A. Q., Wood, E. J., & Fernandes, M. (1982). Psychoacoustic and phonetic temporal processing in normal and hearing-impaired listeners. Journal of the Acoustical Society of America
, 72(3): 740 752.
3. World Health Organization. (2010). Measuring Health and disability: Manual for WHO Disability Assessment Schedule (WHODAS 2.0). Ed., T.B. Ustun, N. Kostanjsek, S Chatterji, J Rehm. Geneva
, Switzerland: WHO Press.
4. Tyler, R., Perreau, A., Mohr, A-M., Ji, H., & Mancini, P. (2020). An exploratory step toward measuring the “Meaning of Life” in patients with tinnitus and in cochlear implant users. Journal of the American Academy of Audiology, 31
5. Baker, C., Perreau, A., & Tyler, R. (March 2020). Measuring the Meaning of Life in patients with hearing loss. Paper presented at American Auditory Society Meeting, Scottsdale, AZ.