Health-Related Quality of Life Changes Associated With Hearing Loss | Otolaryngology | JAMA Otolaryngology–Head & Neck Surgery | JAMA Network
[Skip to Navigation]
Table 1.  Characteristics of Studies Included in the Systematic Review Focused on Recipients of Cochlear Implants
Characteristics of Studies Included in the Systematic Review Focused on Recipients of Cochlear Implants
Table 2.  Demographic and Clinical Characteristics of Item Generation Semistructured Interview Participants
Demographic and Clinical Characteristics of Item Generation Semistructured Interview Participants
Table 3.  Items Generated From All Sources Organized According to the Original Conceptual Framework Adapted From ICF Brief Core Set for Hearing Loss
Items Generated From All Sources Organized According to the Original Conceptual Framework Adapted From ICF Brief Core Set for Hearing Loss
1.
GBD 2015 Disease and Injury Incidence and Prevalence Collaborators.  Global, regional, and national incidence, prevalence, and years lived with disability for 310 diseases and injuries, 1990-2015: a systematic analysis for the Global Burden of Disease Study 2015.   Lancet. 2016;388(10053):1545-1602. doi:10.1016/S0140-6736(16)31678-6 PubMedGoogle ScholarCrossref
2.
Mick  P, Kawachi  I, Lin  FR.  The association between hearing loss and social isolation in older adults.   Otolaryngol Head Neck Surg. 2014;150(3):378-384. doi:10.1177/0194599813518021 PubMedGoogle ScholarCrossref
3.
Li  C-M, Zhang  X, Hoffman  HJ, Cotch  MF, Themann  CL, Wilson  MR.  Hearing impairment associated with depression in US adults, National Health and Nutrition Examination Survey 2005-2010.   JAMA Otolaryngol Head Neck Surg. 2014;140(4):293-302. doi:10.1001/jamaoto.2014.42 PubMedGoogle ScholarCrossref
4.
Lin  FR, Ferrucci  L, Metter  EJ, An  Y, Zonderman  AB, Resnick  SM.  Hearing loss and cognition in the Baltimore Longitudinal Study of Aging.   Neuropsychology. 2011;25(6):763-770. doi:10.1037/a0024238 PubMedGoogle ScholarCrossref
5.
Drummond  MF, Sculpher  MJ, Claxton  K, Stoddart  GL, Torrance  GW.  Methods for the Economic Evaluation of Health Care Programmes. Oxford University Press; 2015.
6.
Drummond  M.  Introducing economic and quality of life measurements into clinical studies.   Ann Med. 2001;33(5):344-349. doi:10.3109/07853890109002088 PubMedGoogle ScholarCrossref
7.
Kraaijenga  VJC, Ramakers  GGJ, Smulders  YE,  et al.  Objective and subjective measures of simultaneous vs sequential bilateral cochlear implants in adults: a randomized clinical trial.   JAMA Otolaryngol Head Neck Surg. 2017;143(9):881-890. doi:10.1001/jamaoto.2017.0745 PubMedGoogle ScholarCrossref
8.
Feeny  D, Huguet  N, McFarland  BH, Kaplan  MS, Orpana  H, Eckstrom  E.  Hearing, mobility, and pain predict mortality: a longitudinal population-based study.   J Clin Epidemiol. 2012;65(7):764-777. doi:10.1016/j.jclinepi.2012.01.003 PubMedGoogle ScholarCrossref
9.
Sintonen  H.  The 15D instrument of health-related quality of life: properties and applications.   Ann Med. 2001;33(5):328-336. doi:10.3109/07853890109002086 PubMedGoogle ScholarCrossref
10.
Hawthorne  G, Richardson  J, Osborne  R.  The Assessment of Quality of Life (AQoL) instrument: a psychometric measure of health-related quality of life.   Qual Life Res. 1999;8(3):209-224. doi:10.1023/A:1008815005736 PubMedGoogle ScholarCrossref
11.
Rabin  R, de Charro  F.  EQ-5D: a measure of health status from the EuroQol Group.   Ann Med. 2001;33(5):337-343. doi:10.3109/07853890109002087 PubMedGoogle ScholarCrossref
12.
Horsman  J, Furlong  W, Feeny  D, Torrance  G.  The Health Utilities Index (HUI): concepts, measurement properties and applications.   Health Qual Life Outcomes. 2003;1:54. doi:10.1186/1477-7525-1-54 PubMedGoogle ScholarCrossref
13.
Smilsky  K, Dixon  PR, Smith  L,  et al.  Isolated second implant adaptation period in sequential cochlear implantation in adults.   Otol Neurotol. 2017;38(8):e274-e281. doi:10.1097/MAO.0000000000001461 PubMedGoogle ScholarCrossref
14.
Chen  JM, Amoodi  H, Mittmann  N.  Cost-utility analysis of bilateral cochlear implantation in adults: a health economic assessment from the perspective of a publicly funded program.   Laryngoscope. 2014;124(6):1452-1458. doi:10.1002/lary.24537 PubMedGoogle ScholarCrossref
15.
Summerfield  AQ, Marshall  DH, Barton  GR, Bloor  KE.  A cost-utility scenario analysis of bilateral cochlear implantation.   Arch Otolaryngol Head Neck Surg. 2002;128(11):1255-1262. doi:10.1001/archotol.128.11.1255 PubMedGoogle ScholarCrossref
16.
Smulders  YE, van Zon  A, Stegeman  I,  et al.  Cost-utility of bilateral versus unilateral cochlear implantation in adults: a randomized controlled trial.   Otol Neurotol. 2016;37(1):38-45. doi:10.1097/MAO.0000000000000901 PubMedGoogle ScholarCrossref
17.
Summerfield  AQ, Barton  GR, Toner  J,  et al.  Self-reported benefits from successive bilateral cochlear implantation in post-lingually deafened adults: randomised controlled trial.   Int J Audiol. 2006;45(suppl 1):S99-S107. doi:10.1080/14992020600783079 PubMedGoogle ScholarCrossref
18.
Arnoldner  C, Lin  VY, Bresler  R,  et al.  Quality of life in cochlear implantees: comparing utility values obtained through the Medical Outcome Study Short-Form Survey-6D and the Health Utility Index Mark 3.   Laryngoscope. 2014;124(11):2586-2590. doi:10.1002/lary.24648 PubMedGoogle ScholarCrossref
19.
Olze  H, Gräbel  S, Haupt  H, Förster  U, Mazurek  B.  Extra benefit of a second cochlear implant with respect to health-related quality of life and tinnitus.   Otol Neurotol. 2012;33(7):1169-1175. doi:10.1097/MAO.0b013e31825e799f PubMedGoogle ScholarCrossref
20.
HealthMeasures. PROMIS instrument development and validation scientific standards, version 2.0. Updated May 2013. Accessed December 8, 2019. http://www.healthmeasures.net/images/PROMIS/PROMISStandards_Vers2.0_Final.pdf
21.
Moher  D, Shamseer  L, Clarke  M,  et al; PRISMA-P Group.  Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols (PRISMA-P) 2015 statement.   Syst Rev. 2015;4(1):1. doi:10.1186/2046-4053-4-1 PubMedGoogle ScholarCrossref
22.
Vas  V, Akeroyd  MA, Hall  DA.  A data-driven synthesis of research evidence for domains of hearing loss, as reported by adults with hearing loss and their communication partners.   Trends Hear. 2017;21:2331216517734088. doi:10.1177/2331216517734088 PubMedGoogle Scholar
23.
Ventry  IM, Weinstein  BE.  The Hearing Handicap Inventory for the Elderly: a new tool.   Ear Hear. 1982;3(3):128-134. doi:10.1097/00003446-198205000-00006 PubMedGoogle ScholarCrossref
24.
Ramsden  RT.  History of cochlear implantation.   Cochlear Implants Int. 2013;14(suppl 4):S3-S5. doi:10.1179/1467010013Z.000000000140 PubMedGoogle ScholarCrossref
25.
The University of Texas School of Public Health. Search filters for various databases: Ovid Medline. Accessed March 4, 2019. http://libguides.sph.uth.tmc.edu/search_filters/ovid_medline_filters
26.
DeJean  D, Giacomini  M, Simeonov  D, Smith  A.  Finding qualitative research evidence for health technology assessment.   Qual Health Res. 2016;26(10):1307-1317. doi:10.1177/1049732316644429 PubMedGoogle ScholarCrossref
27.
World Health Organization.  International Classification of Functioning, Disability and Health: ICF. World Health Organization; 2001.
28.
World Health Organization. Brief ICF core set for hearing loss. February 2012. Accessed March 4, 2019. https://www.icf-research-branch.org/icf-core-sets/send/10-otherhealthconditions/171-brief-icf-core-set-for-hearing-loss
29.
World Health Organization. Comprehensive ICF core set for hearing loss. February 2012. Accessed March 4, 2019. https://www.icf-research-branch.org/icf-core-sets/send/10-otherhealthconditions/172-comprehensive-icf-core-set-for-hearing-oss
30.
Perlis  N, Krahn  M, Alibhai  S,  et al.  Conceptualizing global health-related quality of life in bladder cancer.   Qual Life Res. 2014;23(8):2153-2167. doi:10.1007/s11136-014-0685-9 PubMedGoogle ScholarCrossref
31.
Krahn  M, Ritvo  P, Irvine  J,  et al.  Construction of the Patient-Oriented Prostate Utility Scale (PORPUS): a multiattribute health state classification system for prostate cancer.   J Clin Epidemiol. 2000;53(9):920-930. doi:10.1016/S0895-4356(00)00211-0 PubMedGoogle ScholarCrossref
32.
Fitzpatrick  EM, Fournier  P, Séguin  C, Armstrong  S, Chénier  J, Schramm  D.  Users’ perspectives on the benefits of FM systems with cochlear implants.   Int J Audiol. 2010;49(1):44-53. doi:10.3109/14992020903202512 PubMedGoogle ScholarCrossref
33.
Hotton  M, Bergeron  F.  User’s perspective of benefits of frequency-lowering hearing aids and electric acoustic stimulation cochlear implants in daily life.   Technol Disabil. 2017;29(4):199-209. doi:10.3233/TAD-170186 Google ScholarCrossref
34.
McRackan  TR, Velozo  CA, Holcomb  MA,  et al.  Use of adult patient focus groups to develop the initial item bank for a cochlear implant quality-of-life instrument.   JAMA Otolaryngol Head Neck Surg. 2017;143(10):975-982. doi:10.1001/jamaoto.2017.1182 PubMedGoogle ScholarCrossref
35.
Finlay  L, Molano-Fisher  P.  “Transforming” self and world: a phenomenological study of a changing lifeworld following a cochlear implant.   Med Health Care Philos. 2008;11(3):255-267. doi:10.1007/s11019-007-9116-9 PubMedGoogle ScholarCrossref
36.
Zhao  F, Stephens  SD, Sim  SW, Meredith  R.  The use of qualitative questionnaires in patients having and being considered for cochlear implants.   Clin Otolaryngol Allied Sci. 1997;22(3):254-259. doi:10.1046/j.1365-2273.1997.00036.x PubMedGoogle ScholarCrossref
37.
Zhao  F, Bai  Z, Stephens  D.  The relationship between changes in self-rated quality of life after cochlear implantation and changes in individual complaints.   Clin Otolaryngol. 2008;33(5):427-434. doi:10.1111/j.1749-4486.2008.01773.x PubMedGoogle ScholarCrossref
38.
Ibrahim  MA.  The joy of cochlear implants.   BMJ. 2014;348:g2019. doi:10.1136/bmj.g2019 PubMedGoogle ScholarCrossref
39.
Fournier  P, Fitzpatrick  E, Seguin  C, Armstrong  S, Chenier  J, Schramm  D.  The FM Benefit Counseling Tool (FM-BCT): initial stages of the development of a tool for assessing the benefit of FM amplication from the perspective of adult cochlear implant users.   Can J Speech-Lang Pathol Audiol. 2012;36(2):150-167.Google Scholar
40.
Aguayo  MO, Coady  NF.  The experience of deafened adults: implications for rehabilitative services.   Health Soc Work. 2001;26(4):269-276. doi:10.1093/hsw/26.4.269 PubMedGoogle ScholarCrossref
41.
Bai  Z, Stephens  D.  Subjective outcome measures after cochlear implantation: overall measures.   Audiol Med. 2005;3(4):212-219. doi:10.1080/16513860500474476 Google ScholarCrossref
42.
Hughes  SE, Hutchings  HA, Rapport  FL, McMahon  CM, Boisvert  I.  Social connectedness and perceived listening effort in adult cochlear implant users: a grounded theory to establish content validity for a new patient-reported outcome measure.   Ear Hear. 2018;39(5):922-934. doi:10.1097/AUD.0000000000000553 PubMedGoogle ScholarCrossref
43.
Tucker  D, Compton  MV, Mankoff  L, Labban  J, Dudley  W.  Self-perceived biopsychosocial needs of late-deafened adults with cochlear implants: implications for aural rehabilitation.   J Acad Rehabilitative Audiol. 2014;47:26-41.Google Scholar
44.
Stephens  D, Ringdahl  A, Fitzmaurice  P.  Reported benefits and shortcomings of cochlear implantation by patients and their significant others.   Cochlear Implants Int. 2008;9(4):186-198. doi:10.1179/cim.2008.9.4.186 PubMedGoogle ScholarCrossref
45.
Bartel  LR, Greenberg  S, Friesen  LM,  et al.  Qualitative case studies of five cochlear implant recipients’ experience with music.   Cochlear Implants Int. 2011;12(1):27-33. doi:10.1179/146701010X486435 PubMedGoogle ScholarCrossref
46.
Ng  ZY, Lamb  B, Harrigan  S, Archbold  S, Athalye  S, Allen  S.  Perspectives of adults with cochlear implants on current CI services and daily life.   Cochlear Implants Int. 2016;17(suppl 1):89-93. doi:10.1080/14670100.2016.1157314 PubMedGoogle ScholarCrossref
47.
Hallam  R, Ashton  P, Sherbourne  K, Gailey  L.  Persons with acquired profound hearing loss (APHL): how do they and their families adapt to the challenge?   Health (London). 2008;12(3):369-388. doi:10.1177/1363459308090054PubMedGoogle ScholarCrossref
48.
Moeller  MP, Stille  LJ, Hughes  ML, Lusk  RP.  Perceived improvements and challenges following sequential bilateral cochlear implantation in children and adults.   Cochlear Implants Int. 2018;19(2):72-87. doi:10.1080/14670100.2017.1414021 PubMedGoogle ScholarCrossref
49.
Mestayer  K, Hamilton  T, Friedman  L,  et al.  No puedo escuchar: learn to say “I can’t hear” in multiple languages, and other key travel advice.   Hearing Health. 2017;2017:24-26.Google Scholar
50.
O’Connell  RB.  My new sonic reality, in harmony.   Hearing Health. 2017;33(1):20-21.Google Scholar
51.
Boswell  S.  Music with a cochlear implant: a personal perspective.   ASHA Lead. 2003;8(8):14-14.Google Scholar
52.
Golson  T.  Lost and found.   Hearing Health. 2015;31(4):32-33.Google Scholar
53.
Hallberg  LR-M, Ringdahl  A.  Living with cochlear implants: experiences of 17 adult patients in Sweden.   Int J Audiol. 2004;43(2):115-121. doi:10.1080/14992020400050016 PubMedGoogle ScholarCrossref
54.
Hogan  A, Stewart  M, Giles  E.  It’s a whole new ball game! employment experiences of people with a cochlear implant.   Cochlear Implants Int. 2002;3(1):54-67. doi:10.1179/cim.2002.3.1.54 PubMedGoogle ScholarCrossref
55.
Hogan  A.  Implant outcomes: towards a mixed methodology for evaluating the efficacy of adult cochlear implant programmes.   Disabil Rehabil. 1997;19(6):235-243. doi:10.3109/09638289709166533 PubMedGoogle ScholarCrossref
56.
Dritsakis  G, van Besouw  RM, O’ Meara  A.  Impact of music on the quality of life of cochlear implant users: a focus group study.   Cochlear Implants Int. 2017;18(4):207-215. doi:10.1080/14670100.2017.1303892 PubMedGoogle ScholarCrossref
57.
Newberry  E.  “I wish I had known to prepare for that”: wife, mother, and patient: the impact on family dynamics post-implantation.   Cochlear Implants Int. 2011;12(suppl 2):S24-S26. doi:10.1179/146701011X13074645127315 PubMedGoogle ScholarCrossref
58.
Dyer  HM.  From silence to sound: my quest to hear again.   Hear Loss Mag. 2011;32(4):8.Google Scholar
59.
Mäki-Torkko  EM, Vestergren  S, Harder  H, Lyxell  B.  From isolation and dependence to autonomy—expectations before and experiences after cochlear implantation in adult cochlear implant users and their significant others.   Disabil Rehabil. 2015;37(6):541-547. doi:10.3109/09638288.2014.935490 PubMedGoogle ScholarCrossref
60.
Pelizzone  M, Boëx-Spano  C, Sigrist  A,  et al.  First field trials with a portable CIS processor for the Ineraid multichannel cochlear implant.   Acta Otolaryngol. 1995;115(5):622-628. doi:10.3109/00016489509139377 PubMedGoogle ScholarCrossref
61.
East  CA, Cooper  HR.  Extra-cochlear implants: the patient’s viewpoint.   Br J Audiol. 1986;20(1):55-59. doi:10.3109/03005368609078998 PubMedGoogle ScholarCrossref
62.
Fitzpatrick  EM, Leblanc  S.  Exploring the factors influencing discontinued hearing aid use in patients with unilateral cochlear implants.   Trends Amplif. 2010;14(4):199-210. doi:10.1177/1084713810396511 PubMedGoogle ScholarCrossref
63.
Ross  L, Lyon  P.  Escaping a silent world: profound hearing loss, cochlear implants and household interaction.   Int J Consum Stud. 2007;31:357-362. doi:10.1111/j.1470-6431.2006.00561.x Google ScholarCrossref
64.
Neria  CM.  Emerging Adults with Cochlear Implants: Their Experiences and Lifeworlds. Chapman University; 2011.
65.
Rembar  S, Lind  O, Arnesen  H, Helvik  A-S.  Effects of cochlear implants: a qualitative study.   Cochlear Implants Int. 2009;10(4):179-197. doi:10.1179/cim.2009.10.4.179 PubMedGoogle ScholarCrossref
66.
Snell  L.  Documenting the lived experiences of young adult cochlear implant users: “feeling” sound, fluidity and blurring boundaries.   Disabil Soc. 2015;30(3):340-352. doi:10.1080/09687599.2015.1014086 Google ScholarCrossref
67.
Buhagiar  R, Lutman  M.  Development of a quality-of-life measure for adult patients with sequential bilateral cochlear implants.   Cochlear Implants Int. 2011;12(suppl 2):S44-S46. doi:10.1179/146701011X13074645127559PubMedGoogle ScholarCrossref
68.
Finke  M, Bönitz  H, Lyxell  B, Illg  A.  Cochlear implant effectiveness in postlingual single-sided deaf individuals: what’s the point?   Int J Audiol. 2017;56(6):417-423. doi:10.1080/14992027.2017.1296595 PubMedGoogle ScholarCrossref
69.
Adler  JM.  Bringing the (disabled) body to personality psychology: a case study of Samantha.   J Pers. 2018;86(5):803-824. doi:10.1111/jopy.12364 PubMedGoogle ScholarCrossref
70.
Duchesne  L, Millette  I, Bhérer  M, Gobeil  S.  Auditory performance and subjective benefits in adults with congenital or prelinguistic deafness who receive cochlear implants during adulthood.   Cochlear Implants Int. 2017;18(3):143-152. doi:10.1080/14670100.2017.1290925 PubMedGoogle ScholarCrossref
71.
Tyler  RS.  Advantages of disadvantages expected and reported by cochlear implant patients.   Am J Otol. 1994;15(4):523-531.PubMedGoogle Scholar
72.
Tyler  RS, Kelsay  D.  Advantages and disadvantages reported by some of the better cochlear-implant patients.   Am J Otol. 1990;11(4):282-289.PubMedGoogle Scholar
73.
Mestayer  K, Vernon  J.  Advantage, hearing loss.   Hear Health. 2017;33(2):34-35.Google Scholar
74.
Jeffs  E, Redfern  K, Stanfield  C,  et al.  A pilot study to explore the experiences of congenitally or early profoundly deafened candidates who receive cochlear implants as adults.   Cochlear Implants Int. 2015;16(6):312-320. doi:10.1179/1754762815Y.0000000011 PubMedGoogle ScholarCrossref
75.
Gomersall  PA, Baguley  DM, Carlyon  RP.  A cross-sectional questionnaire study of tinnitus awareness and impact in a population of adult cochlear implant users.   Ear Hear. 2019;40(1):135-142. doi:10.1097/AUD.0000000000000601PubMedGoogle ScholarCrossref
76.
Pope  RW.  4 Decades of coping with Ménière’s disease + 2 cochlear implants = 6 insights into hearing.   Hear Health. 2017;33(4):22-23.Google Scholar
77.
Gatehouse  S, Noble  W.  The Speech, Spatial and Qualities of Hearing Scale (SSQ).   Int J Audiol. 2004;43(2):85-99. doi:10.1080/14992020400050014 PubMedGoogle ScholarCrossref
78.
Hinderink  JB, Krabbe  PFM, Van Den Broek  P.  Development and application of a health-related quality-of-life instrument for adults with cochlear implants: the Nijmegen Cochlear Implant questionnaire.   Otolaryngol Head Neck Surg. 2000;123(6):756-765. doi:10.1067/mhn.2000.108203 PubMedGoogle ScholarCrossref
79.
McRackan  TR, Hand  BN, Velozo  CA, Dubno  JR; Cochlear Implant Quality of Life Development Consortium.  Development of the Cochlear Implant Quality of Life Item Bank.   Ear Hear. 2019;40(4):1016-1024. doi:10.1097/AUD.0000000000000684 PubMedGoogle ScholarCrossref
80.
McRackan  TR, Hand  BN, Velozo  CA, Dubno  JR; Cochlear Implant Quality of Life Development Consortium.  Cochlear Implant Quality of Life (CIQOL): development of a profile instrument (CIQOL-35 Profile) and a global measure (CIQOL-10 Global).   J Speech Lang Hear Res. 2019;62(9):3554-3563. doi:10.1044/2019_JSLHR-H-19-0142 PubMedGoogle ScholarCrossref
Limit 200 characters
Limit 25 characters
Conflicts of Interest Disclosure

Identify all potential conflicts of interest that might be relevant to your comment.

Conflicts of interest comprise financial interests, activities, and relationships within the past 3 years including but not limited to employment, affiliation, grants or funding, consultancies, honoraria or payment, speaker's bureaus, stock ownership or options, expert testimony, royalties, donation of medical equipment, or patents planned, pending, or issued.

Err on the side of full disclosure.

If you have no conflicts of interest, check "No potential conflicts of interest" in the box below. The information will be posted with your response.

Not all submitted comments are published. Please see our commenting policy for details.

Limit 140 characters
Limit 3600 characters or approximately 600 words
    Original Investigation
    May 14, 2020

    Health-Related Quality of Life Changes Associated With Hearing Loss

    Author Affiliations
    • 1Department of Otolaryngology–Head & Neck Surgery, University of Toronto, Toronto, Ontario, Canada
    • 2Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada
    • 3Toronto Health Economics and Technology Assessment Collaborative, Toronto, Ontario, Canada
    • 4Department of Economics, McMaster University, Hamilton, Ontario, Canada
    • 5Centre for Health Economics and Policy Analysis, McMaster University, Hamilton, Ontario, Canada
    • 6Health Utilities Incorporated, Hamilton, Ontario, Canada
    • 7Department of Otolaryngology–Head & Neck Surgery, Hospital for Sick Children, Toronto, Ontario, Canada
    • 8Department of Otolaryngology–Head & Neck Surgery, Sunnybrook Health Sciences Centre, Toronto, Ontario, Canada
    • 9University Health Network, Department of Medicine, University of Toronto, Toronto, Ontario, Canada
    JAMA Otolaryngol Head Neck Surg. 2020;146(7):630-638. doi:10.1001/jamaoto.2020.0674
    Key Points

    Question  What changes in health-related quality of life are associated with hearing loss?

    Findings  In this qualitative study, a systematic literature review of 45 studies including 1036 patients with hearing loss, an expert focus group of 4 audiologists and 4 otologists, and semistructured interviews with 26 individuals with hearing loss were used to identify a comprehensive list of the 29 subdomains of quality of life associated with hearing loss.

    Meaning  Understanding the multifaceted associations of hearing loss with health-related quality of life is essential to studying hearing loss conditions and treatments; the framework presented here is useful for generation or evaluation of hearing-related quality of life measures.

    Abstract

    Importance  Utility is a single-value, preference-based measure of health-related quality of life that represents the desirability of a health state relative to being dead or in perfect health. Clinical, funding, and policy decisions rely on measured changes in utility. The benefit of hearing loss treatments may be underestimated because existing utility measures fail to capture important changes in quality of life associated with hearing loss.

    Objective  To develop a comprehensive profile of items that describe how quality of life is associated with hearing loss and its treatments that can be used to generate hearing-related quality of life measures, including a novel utility measure.

    Design, Setting, and Participants  This qualitative study, performed from August 1, 2018, to August 1, 2019, in tertiary referral centers, comprised a systematic literature review, focus groups, and semistructured interviews. The systematic review evaluated studies published from 1982 to August 1, 2018. Focus groups included 8 clinical experts experienced in the measurement, diagnosis, treatment, and rehabilitation of hearing loss. Semistructured interviews included 26 adults with hearing loss recruited from an institutional data set and outpatient hearing aid and otology clinics using stratified convenience sampling to include individuals of diverse ages, urban and rural residency, causes of hearing loss, severity of hearing loss, and treatment experience.

    Main Outcomes and Measures  A set of items and subdomains that collectively describe the association of hearing loss with health-related quality of life.

    Results  The literature search yielded 2779 articles from the MEDLINE, Embase, Cochrane, PsycINFO, and CINAHL databases. Forty-five studies including 1036 individuals (age range, 18-84 years) were included. The focus group included 4 audiologists and 4 otologists. Hour-long semistructured interviews were conducted with 26 individuals (13 women; median age, 54 years; range, 25-83 years) with a broad range of hearing loss causes, configurations, and severities. From all 3 sources, a total of 125 items were generated and organized into 29 subdomains derived from the World Health Organization’s International Classification of Functioning, Disability and Health.

    Conclusions and Relevance  The association of hearing loss with quality of life is multidimensional and includes subdomains that are not considered in the estimation of health utility by existing utility measures. The presented comprehensive profile of items can be used to generate or evaluate measures of hearing-related quality of life, including utility measures.

    Introduction

    Hearing loss is the fourth-leading cause of disability globally and is associated with social isolation, depression, cognitive decline, and other negative health outcomes.1-4 Measures of health-related quality of life (HRQoL) quantify the ultimate outcome associated with hearing loss and its associated deficits and are therefore important measures of the effectiveness of hearing loss interventions.

    Health utility is a single-number summary of HRQoL that represents the desirability of a health state relative to being dead (assigned a utility of 0) or in perfect health (assigned a utility of 1). Utility is used in clinical studies and population health surveys as a global measure of health status. It is also used in cost-effectiveness analyses as a HRQoL weight in the calculation of quality-adjusted life expectancy.5-8 Funding and policy decisions are increasingly reliant on measured changes in utility. The risk in the assessment of hearing loss interventions is that, if available utility measures fail to capture important improvements, beneficial health care resources may be withheld inappropriately.

    The validity of utility estimates depends on the content of the questionnaire—if relevant questions about health status are not asked, relevant changes may not be captured. The Health Utilities Index Mark 3 is commonly used to study HRQoL in hearing loss in part because its hearing content is relatively comprehensive; others have more limited conceptualizations or do not include hearing at all.9-11 The Health Utilities Index Mark 3 summarizes the respondents’ ability to understand speech in one-on-one and group settings and their reliance on hearing aids.12 Hearing loss, however, occurs on a spectrum of severities across a range of frequencies and 2 independent ears. Signals are integrated to provide more than detection of sound but an entire perception of an individuals’ position in auditory space. A simplified conceptualization of hearing may fail to capture impairments that are important to individuals with the hearing loss. For example, sound localization and listening effort are impaired in monoaural hearing and are not described in the Health Utilities Index Mark 3 or any other utility instrument. Available utility estimates may therefore underestimate the benefit of interventions designed to achieve a semblance of binaural hearing. Bilateral cochlear implantation is one example, where measured utility change compared with unilateral implantation is minimal, ranging from 0.02 to −0.03.7,13-15 This finding contradicts established performance benefits such as speech recognition and sound localization,13,16 as well as HRQoL improvements measured with other instruments.16-19 A new utility measure that comprehensively characterizes the abilities and disabilities of patients across the spectrum of hearing loss is critical for accurately characterizing the effectiveness of modern hearing loss interventions.

    Scientific standards for the development of typical HRQoL instruments are well established,20 and most principles are also applicable to the development of condition-specific utility instruments.10-12 The multiphase process must begin with a valid and comprehensive conceptualization of the target construct. The objective of the present study was to identify independent subdomains of hearing that, when considered collectively, describe how hearing loss and its treatment are associated with HRQoL. This comprehensive profile could be used to generate or evaluate any measure of hearing-related quality of life, including a new hearing-specific utility instrument.

    Methods

    This qualitative study was performed from August 1, 2018, to August 1, 2019. Specific examples of hearing-related function or disability that are associated with changes in HRQoL are referred to as “items.” Multiple sources were consulted for item generation, including a systematic literature review, expert focus group, and semistructured interviews of patients. Written informed consent was obtained from each participant in the focus group and all patients and the study was approved by the Sunnybrook Health Sciences Centre Research Ethics Board. The systematic review is reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) reporting guideline.21

    Systematic Literature Review

    We sought studies that described changes in HRQoL associated with hearing loss. A systematic review published in 2017 reports items relevant to adults with hearing loss and their communication partners.22 Items from that review were extracted to serve as a preliminary item list. Given the underrepresentation of patients with cochlear implants (CIs) in that review, a separate systematic review was conducted to summarize qualitative studies exploring the HRQoL of patients with CIs.

    Eligibility Criteria
    Study Designs

    Eligible studies explored the HRQoL of patients with CIs with open-ended or closed-ended questionnaires, interviews, or focus groups. Experimental, observational, and cross-sectional studies along with case reports and autobibliographic reports were eligible. Professional commentaries and web-based forums were excluded.

    Participants, Intervention, and Comparison

    The target population for the systematic review was adults (≥18 years of age) with hearing loss rehabilitated with a unilateral CI or bilateral CIs. No restriction on the comparison groups was applied.

    Setting and Time Frame

    Eligible studies were published in or after 1982, the year of publication of one of the earliest hearing loss patient-reported outcome measures, the Hearing Handicap Inventory for the Elderly.23 This time frame also approximates the market introduction of the multichannel CI.24 Studies published up to August 1, 2018, were eligible.

    Information Sources

    Databases searched included MEDLINE, Embase Classic+Embase, Cochrane, PsycINFO, and CINAHL. Conference abstracts were included.

    Search

    Generated in consultation with a medical librarian, the search consisted of subject headings and text word terms for cochlear implants AND quality of life AND qualitative research (eFigure 1 in the Supplement). Validated search strategies for qualitative studies were applied.25,26 Reference lists of included articles supplemented the search.

    Study Selection

    Abstract and title screening and full-text review were completed in duplicate. Discrepancies were resolved by a third investigator.

    Data Collection and Data Items

    A piloted data collection form was used to extract study year of publication, country of origin, design, qualitative data collection method, and sample size. Participant mean age, proportion female, severity and proportion of bilateral or unilateral hearing impairment, and intervention was extracted for each study. Data were managed with DistillerSR (Evidence Partners).

    Item extraction was performed independently by 2 investigators (including P.R.D.). For studies whose qualitative component was a predicate step to generation of an HRQoL instrument, questions included in the preliminary instrument were extracted. The aim of capturing all reported items and subdomains obviated the relevance of a risk of bias assessment for articles in this review.

    Expert Focus Group

    A group of 8 experts (4 audiologists and 4 otologists) was convened after the systematic review was complete to generate additional items. Broad inclusion of individuals with varying expertise in the medical and surgical treatments and rehabilitation of patients with hearing loss was prioritized. Discussion was led first by open-ended questions about factors that are associated with the quality of life of patients with hearing loss. Once novel items were no longer generated spontaneously, experts were guided through the World Health Organization’s International Classification of Functioning, Disability and Health (ICF) brief core set for hearing loss and then the master item list generated by the systematic review to generate additional discussion.

    Key Stakeholder (Patient) Semistructured Interviews

    A total of 26 patients were consulted in individual semistructured interviews for further item generation. Adult (≥18 years of age) English-speaking participants with hearing loss were recruited from those seen in audiology and otolaryngology clinics for various levels of hearing loss, those evaluated for hearing aid fitting, and those evaluated for CI surgery. Stratified convenience sampling was applied to recruit participants with a broad distribution of ages, urban and rural residency, causes of hearing loss, severity of hearing loss, and treatment experience. Block recruitment ensured that at least 1 participant from each of 6 defined hearing categories (mild to moderate hearing loss, single-sided deafness, candidate for CI on both sides, CI with contralateral normal hearing, CI with contralateral hearing loss, and bilateral CIs) was included in each block. Semistructured interviews continued until saturation, defined as no emergence of new items in a participant block.

    The interview began with open-ended questions including: “In your personal experience, how has hearing loss impacted your quality of life?” Participants were encouraged to reflect on the past several weeks and then on years prior and other stages of their hearing loss and other treatments they had experienced. When no novel items were spontaneously offered, the master list including items generated from the systematic review and expert focus group was presented to stimulate further discussion.

    Data Synthesis for Systematic Review, Focus Groups, and Semistructured Interviews

    Items extracted from studies included in the systematic review were initially organized according the World Health Organization’s ICF core sets for hearing loss. Core sets are standardized sets of categories designed to systematically describe health.27-29 New categories were generated for items or subdomains that were not suitable for inclusion in existing hearing loss core set categories. The resulting item list and subdomain framework served as the preliminary master item list.

    Items generated by spontaneous and guided discussion in the focus group or semistructured interviews were added to the master item list in real time. The language used to describe items and their categorization were reviewed with and approved by the participant(s). If any participant thought that an item reflected a concept unique from existing subdomains, a new subdomain was generated. Transcripts were reviewed by 2 study investigators (including P.R.D.), organized thematically, and compared with the master item list to ensure that all discussed items were captured. New items and subdomains were added if either investigator considered an identified theme to be unique from those already listed. This approach is adapted from previously reported conceptualizations of condition-specific HRQoL.30,31

    Results
    Information Sources
    Systematic Review Study Selection and Characteristics

    The search yielded 2779 unique publications. Full-text review confirmed eligibility of 45 studies (eFigure 2 in the Supplement).32-76 There was broad geographic representation of studies from predominantly developed countries (Table 1). Across all studies, 1036 participants (age range, 18-84 years) were included. Semistructured interviews were the most common data collection method (18 of 45 [40%]) followed by open-ended questionnaires (14 of 45 [31%]).

    Focus Group Participants

    Focus group participants included 4 audiologists with experience with various methods of hearing rehabilitation including CI and hearing aid fitting, and 4 otolaryngologists with subspecialty interest in otology and neurotology.

    Semistructured Interview Participants

    Two blocks of participants were recruited, including 26 individuals with hearing loss (Table 2). Saturation of information was achieved with this sample. A broad range of ages (median, 54 years; range, 25-83 years) and equal proportion of sexes (13 women) were included. Sudden idiopathic hearing loss was the most common cause (9 of 26 [35%]).

    Identification and Organization of Items and Subdomains

    All 56 items reported in the identified previously published systematic review were extracted.22 Extraction of data from the 45 studies included in our systematic review yielded 111 items. Of those, 56 were represented by items identified in the previous review and 55 were novel. These 111 items were organized according to 23 of the 27 categories in the ICF brief core set for hearing loss as well as 5 additional categories added from the ICF comprehensive core set for hearing loss and 1 additional category from the ICF framework that is not included in either hearing loss core set (Table 3).

    The expert focus group discussions generated 14 additional items (Table 3). There was unanimous agreement from focus groups participants that all items discussed had been added to the master item list. The experts acknowledged that additional real-life examples pertaining to a particular item could be conceptualized, but that no further items representing unique concepts could be suggested.

    No unique items were generated by semistructured patient interviews. At the conclusion of each interview after structured review of the master item list with the interview participant, all participants agreed that all discussed topics were captured by the existing list. Review of themes abstracted from interview transcripts supported that conclusion.

    Items and Subdomains Emphasized in Patient Semistructured Interviews

    Several subdomains and items were emphasized as being important to quality of life by interview participants. Additional supporting quotations are provided in the eTable in the Supplement.

    Communication: Receiving Spoken Messages

    Impaired ability to recognize and understand speech was described as being context dependent, varying on the characteristics of the speaker and the environment. Characteristics of the speaker included voice pitch and accent, as well as the presence of multiple talkers: “Women’s voices seems to be a little bit easier to pick up for me” (male, aged 50-59 years, bilateral CIs). The presence of background noise increased the challenge of understanding speech and sometimes led to social avoidance.

    Using Communications Devices and Techniques: Conversing on the Telephone

    An inability or reduced ability to understand what was said over a telephone was particularly notable in work environments, where the ability to use alternative methods of communication were more limited: “I’m a pharmacist. I couldn’t take phone calls. I couldn’t speak to doctors on the phone. I really couldn’t interact with staff” (male, aged 50-59 years, bilateral CIs).

    Hearing Functions: Environmental Sounds

    Hearing thresholds were typically discussed in the context of ability to hear and recognize certain environmental sounds. Participants emphasized the safety implications of missing certain warning sounds: “[Before my CI] I wouldn’t know if somebody was at the door. Or, the phone was ringing. Or, the fire alarm was going off…you have no clue” (male, aged 50-59 years, bilateral CIs).

    Hearing Functions: Sound Localization

    An inability to identify the location of sounds in one’s surrounding environment was a recurring theme, particularly for patients with a unilateral CI or single-sided deafness. The safety implications of misinterpreting the direction of origin of some sounds was emphasized: “An ambulance…it’s not hearing it, it’s pinpointing where it is and where it’s coming from” (male, aged 50-59 years, single-sided deafness).

    Hearing Functions: Hearing Sounds on Both Sides

    Participants described missing sounds on their poor-hearing side and the nuisance of having to position themselves strategically to ensure their better-hearing side was directed toward an important signal. Participants also described the troubling sensation of having an incomplete sound field as well as the relative differences in sound quality associated with hearing with 2 ears instead of 1: “…when you have the hearing on both sides…it’s, it’s louder. It’s clearer” (male, aged 50-59 years, bilateral CIs).

    Sensations Associated With Hearing and Vestibular Functions: Tinnitus

    The reported association of tinnitus with quality of life was variable. Some participants described an intrusive and annoying sound that was associated with profoundly reduced quality of life, others reported tinnitus but were not bothered by it, and others had not experienced tinnitus. Perception was noted to be dependent on environment and stress: “Tinnitus is always, always, always there…I’m living with the damn noise [of] my tinnitus” (female, aged 50-59 years, single-sided deafness with CI). “A few occasions I hear whooshing, something like that and it stops and I forgot all about it” (male, aged 80-89 years, hearing aids).

    Attention Functions: Listening Effort

    The effort and focus required to hear had a negative association with some respondents’ quality of life, predominantly mediated through reduced energy level: “If I had a long day—I would come home and I would be exhausted… Because you’re spending a lot of time focusing” (male, aged 50-59 years, bilateral CIs).

    Recreation and Leisure: Pleasure of Listening to Music

    Many participants described a reduced enjoyment of music associated with their hearing impairment, particularly among participants with CI(s): “I would try to put on a CD [compact disc] and oh, it just—it sounds like garbage” (male, aged 50-59 years, unilateral CI).

    Some participants described a reduced enjoyment of music because it distracted from one’s ability to understand speech: “I like to drive with music, I can’t anymore…if there’s music, there’s no conversation. If there’s conversation there’s no music” (male, aged 20-29 years, single-sided deafness).

    Products and Technology for Communication

    The negative HRQoL implications of assistive hearing devices reported included stigma, comfort, and breakdown: “I have to carry around like the case with me all the time and then I always worry about the battery…I don’t like being reliant on a contraption” (female, aged 30-39 years, hearing aids).

    Informal Social Relationships

    Participants described a reduced willingness to attend social events owing to poor speech recognition and a negative association with existing relationships owing to communication partners’ frustration with making accommodations (eg, frequent need for repetition). Developing new social relationships was described as challenging owing to limited ability to interpret verbal social cues, which led to misunderstandings: “I don’t hear enough of a person to know what they’re like…there’s no interaction between people if you can’t hear them, so there’s no affinities going on, no likes or dislikes” (female, aged 60-69 years, bilateral CIs).

    School Education and Remunerative Employment

    Hearing loss was also described to have an association with educational and vocational achievement: “…there was a major change in my grades, like I would get C’s until my hearing got better, then I would get B’s and A’s” (female, aged 30-39 years, hearing aids).

    Some participants described poor speech understanding as a cause of embarrassment, which was associated with an unwillingness to ask for accommodations at school or work: “…in grade 9 I had another bit of a hearing loss and you know how teenagers are, they start getting self-conscious and all that…so I’d just get bad grades…” (female, aged 60-69 years, bilateral CIs).

    Work performance and advancement had a negative association with hearing loss through perceived discrimination and avoidance of work that required social engagement.

    Discussion

    A data-driven approach to conceptualizing the association between hearing loss and HRQoL was taken whereby examples of how hearing loss is associated with HRQoL were systematically collected from a literature review, clinical experts, and patients. The result is a comprehensive profile of subdomains and items that can be used for the generation and evaluation of tools for measuring HRQoL of individuals with hearing loss.

    Our approach differs from the top-down approach applied in the generation of some existing hearing-related quality-of-life instruments. Both the Nijmegen Cochlear Implant Questionnaire and the Speech, Spatial and Qualities of Hearing Scale, for example, are based on a subdomain framework generated solely by expert opinion; items were generated to fit within those frameworks.77,78 Reliance on a single source for subdomain generation introduces the potential for a narrowed conceptualization of the target construct. A comparatively rigorous conceptualization of hearing served as the basis for the recent generation of the Cochlear Implant Quality of Life instruments.34,79,80 Communication, emotion, environmental sounds, independence and work function, listening effort, social isolation and ability to socialize, and sound clarity were themes that McRacken and colleagues34 identified as being relevant to the HRQoL of patients with CIs. All these themes were also identified in our study to be of importance to the broader population of individuals with hearing loss. We also identified additional items—including tinnitus and reliance on products and technology for communication. Observed differences may be explained by differing HRQoL priorities of patients with CIs compared with those of the broader population with hearing loss. Greater diversity of sources for item and subdomain generation applied in our study may also have accounted for identification of additional items and subdomains in our study. For example, expert opinion was systematically included in the form of a focus group. Patient input was captured with individual semistructured interviews rather than focus groups, which may have more reliably captured the opinions of individuals with hearing impairments that challenge participation in group conversation.

    Part of the motivation for our work was to generate a comprehensive pool of subdomains and items that could be used to generate a new utility instrument. Design of any HRQoL measure requires an understanding of how HRQoL can be associated with the condition under study and can be conceptualized with a list of subdomains and items. To balance accurate estimation of HRQoL and response burden of the new instrument, the list is systematically shortened by eliminating items that are least important or redundant. Parsimony is particularly important in utility instruments, where the scoring function requires the utility associated with all possible sets of responses (ie, health states) to be empirically estimated or modeled. The number of possible health states can quickly become unmanageable for this labor-intensive exercise: an instrument with 10 questions each with 5 response options has more than 9.7 million response combinations. Consulting patients with hearing loss about the importance of each item and subdomain to their HRQoL is one approach to identifying which of these items and subdomains should be included in a novel hearing utility instrument.30,31 No matter how meticulous the item reduction method, mistakenly omitting an important item from the initial conceptualization guarantees that it will not be included in the final instrument.

    Limitations

    This study has some limitations. A challenge of holistically describing the association of hearing loss with HRQoL is that the characteristics of the individuals and their hearing loss modify that association. There are numerous causes of hearing loss and a nearly unlimited spectrum of hearing loss severity, some of which may be associated with unique HRQoL implications. A limited sample of demographics and causes were represented by semistructured interview participants. Setting is also associated with participant selection. Patients and experts were recruited from a tertiary referral center offering a spectrum of treatment including a CI program, implying access to comprehensive care. To mitigate potential selection bias, we purposefully sampled experts who treat all types and severities of hearing loss and patients with varied demographics and hearing impairments at various stages of treatment. Broad international representation in the literature search may also have compensated for bias associated with setting. Sequential consultation of multiple independent sources further reduced risk of selection bias and also served to check the comprehensiveness of previous steps. That no novel items or subdomains were identified in the semistructured interviews supports the robustness of the systematic review and focus group. Nonetheless, the potential for additional items or subdomains to have been identified by broader inclusion of studies in the systematic review or additional focus group or interview participants is acknowledged.

    Conclusions

    We present a comprehensive set of items and subdomains that describe how hearing loss is associated with HRQoL. This conceptualization can be used to evaluate the appropriateness and comprehensiveness of existing measures of hearing-associated HRQoL. It can also be used to generate new measures of HRQoL, including a utility instrument, specific to populations with hearing loss. Such an instrument would be the logical choice for clinical, population health, and cost-effectiveness studies evaluating HRQoL changes associated with hearing loss.

    Back to top
    Article Information

    Accepted for Publication: March 17, 2020.

    Corresponding Author: Peter R. Dixon, MD, MSc, Department of Otolaryngology–Head & Neck Surgery, University of Toronto, Six Queen’s Park Crescent W, Ste 120, Toronto, ON M5S 3H2, Canada (peter.dixon@utoronto.ca).

    Published Online: May 14, 2020. doi:10.1001/jamaoto.2020.0674

    Author Contributions: Dr Dixon had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

    Concept and design: Dixon, Feeny, Chen, Krahn.

    Acquisition, analysis, or interpretation of data: Dixon, Feeny, Tomlinson, Cushing, Krahn.

    Drafting of the manuscript: Dixon, Krahn.

    Critical revision of the manuscript for important intellectual content: Dixon, Feeny, Tomlinson, Cushing, Chen.

    Statistical analysis: Dixon, Tomlinson.

    Obtained funding: Dixon, Chen.

    Administrative, technical, or material support: Dixon, Krahn.

    Supervision: Feeny, Cushing, Chen, Krahn.

    Conflict of Interest Disclosures: Dr Feeny reported a patent to Health Utilities Inc issued, licensed, and with royalties paid. Dr Cushing reported serving on the speakers bureau for Cochlear Corporation during the conduct of the study; serving on the speakers bureau for Interacoustics and Plural Publishing outside the submitted work; and having a patent to 7041-0 issued. No other disclosures were reported.

    Funding/Support: This work was supported by the Harry Barberian Scholarship.

    Role of the Funder/Sponsor: The funding source had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

    Additional Contributions: Jenna Wolno, BSc, Department of Otolaryngology–Head & Neck Surgery and Cochlear Implant Program, Sunnybrook Health Sciences Centre, contributed to acquisition of data and administrative support for this work. She was employed as a paid research assistant. Joanna Bielecki, BSc, MISt, contributed her expertise as a research librarian to generation of the systematic review search strategy. She was compensated in her role as a paid research librarian.

    References
    1.
    GBD 2015 Disease and Injury Incidence and Prevalence Collaborators.  Global, regional, and national incidence, prevalence, and years lived with disability for 310 diseases and injuries, 1990-2015: a systematic analysis for the Global Burden of Disease Study 2015.   Lancet. 2016;388(10053):1545-1602. doi:10.1016/S0140-6736(16)31678-6 PubMedGoogle ScholarCrossref
    2.
    Mick  P, Kawachi  I, Lin  FR.  The association between hearing loss and social isolation in older adults.   Otolaryngol Head Neck Surg. 2014;150(3):378-384. doi:10.1177/0194599813518021 PubMedGoogle ScholarCrossref
    3.
    Li  C-M, Zhang  X, Hoffman  HJ, Cotch  MF, Themann  CL, Wilson  MR.  Hearing impairment associated with depression in US adults, National Health and Nutrition Examination Survey 2005-2010.   JAMA Otolaryngol Head Neck Surg. 2014;140(4):293-302. doi:10.1001/jamaoto.2014.42 PubMedGoogle ScholarCrossref
    4.
    Lin  FR, Ferrucci  L, Metter  EJ, An  Y, Zonderman  AB, Resnick  SM.  Hearing loss and cognition in the Baltimore Longitudinal Study of Aging.   Neuropsychology. 2011;25(6):763-770. doi:10.1037/a0024238 PubMedGoogle ScholarCrossref
    5.
    Drummond  MF, Sculpher  MJ, Claxton  K, Stoddart  GL, Torrance  GW.  Methods for the Economic Evaluation of Health Care Programmes. Oxford University Press; 2015.
    6.
    Drummond  M.  Introducing economic and quality of life measurements into clinical studies.   Ann Med. 2001;33(5):344-349. doi:10.3109/07853890109002088 PubMedGoogle ScholarCrossref
    7.
    Kraaijenga  VJC, Ramakers  GGJ, Smulders  YE,  et al.  Objective and subjective measures of simultaneous vs sequential bilateral cochlear implants in adults: a randomized clinical trial.   JAMA Otolaryngol Head Neck Surg. 2017;143(9):881-890. doi:10.1001/jamaoto.2017.0745 PubMedGoogle ScholarCrossref
    8.
    Feeny  D, Huguet  N, McFarland  BH, Kaplan  MS, Orpana  H, Eckstrom  E.  Hearing, mobility, and pain predict mortality: a longitudinal population-based study.   J Clin Epidemiol. 2012;65(7):764-777. doi:10.1016/j.jclinepi.2012.01.003 PubMedGoogle ScholarCrossref
    9.
    Sintonen  H.  The 15D instrument of health-related quality of life: properties and applications.   Ann Med. 2001;33(5):328-336. doi:10.3109/07853890109002086 PubMedGoogle ScholarCrossref
    10.
    Hawthorne  G, Richardson  J, Osborne  R.  The Assessment of Quality of Life (AQoL) instrument: a psychometric measure of health-related quality of life.   Qual Life Res. 1999;8(3):209-224. doi:10.1023/A:1008815005736 PubMedGoogle ScholarCrossref
    11.
    Rabin  R, de Charro  F.  EQ-5D: a measure of health status from the EuroQol Group.   Ann Med. 2001;33(5):337-343. doi:10.3109/07853890109002087 PubMedGoogle ScholarCrossref
    12.
    Horsman  J, Furlong  W, Feeny  D, Torrance  G.  The Health Utilities Index (HUI): concepts, measurement properties and applications.   Health Qual Life Outcomes. 2003;1:54. doi:10.1186/1477-7525-1-54 PubMedGoogle ScholarCrossref
    13.
    Smilsky  K, Dixon  PR, Smith  L,  et al.  Isolated second implant adaptation period in sequential cochlear implantation in adults.   Otol Neurotol. 2017;38(8):e274-e281. doi:10.1097/MAO.0000000000001461 PubMedGoogle ScholarCrossref
    14.
    Chen  JM, Amoodi  H, Mittmann  N.  Cost-utility analysis of bilateral cochlear implantation in adults: a health economic assessment from the perspective of a publicly funded program.   Laryngoscope. 2014;124(6):1452-1458. doi:10.1002/lary.24537 PubMedGoogle ScholarCrossref
    15.
    Summerfield  AQ, Marshall  DH, Barton  GR, Bloor  KE.  A cost-utility scenario analysis of bilateral cochlear implantation.   Arch Otolaryngol Head Neck Surg. 2002;128(11):1255-1262. doi:10.1001/archotol.128.11.1255 PubMedGoogle ScholarCrossref
    16.
    Smulders  YE, van Zon  A, Stegeman  I,  et al.  Cost-utility of bilateral versus unilateral cochlear implantation in adults: a randomized controlled trial.   Otol Neurotol. 2016;37(1):38-45. doi:10.1097/MAO.0000000000000901 PubMedGoogle ScholarCrossref
    17.
    Summerfield  AQ, Barton  GR, Toner  J,  et al.  Self-reported benefits from successive bilateral cochlear implantation in post-lingually deafened adults: randomised controlled trial.   Int J Audiol. 2006;45(suppl 1):S99-S107. doi:10.1080/14992020600783079 PubMedGoogle ScholarCrossref
    18.
    Arnoldner  C, Lin  VY, Bresler  R,  et al.  Quality of life in cochlear implantees: comparing utility values obtained through the Medical Outcome Study Short-Form Survey-6D and the Health Utility Index Mark 3.   Laryngoscope. 2014;124(11):2586-2590. doi:10.1002/lary.24648 PubMedGoogle ScholarCrossref
    19.
    Olze  H, Gräbel  S, Haupt  H, Förster  U, Mazurek  B.  Extra benefit of a second cochlear implant with respect to health-related quality of life and tinnitus.   Otol Neurotol. 2012;33(7):1169-1175. doi:10.1097/MAO.0b013e31825e799f PubMedGoogle ScholarCrossref
    20.
    HealthMeasures. PROMIS instrument development and validation scientific standards, version 2.0. Updated May 2013. Accessed December 8, 2019. http://www.healthmeasures.net/images/PROMIS/PROMISStandards_Vers2.0_Final.pdf
    21.
    Moher  D, Shamseer  L, Clarke  M,  et al; PRISMA-P Group.  Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols (PRISMA-P) 2015 statement.   Syst Rev. 2015;4(1):1. doi:10.1186/2046-4053-4-1 PubMedGoogle ScholarCrossref
    22.
    Vas  V, Akeroyd  MA, Hall  DA.  A data-driven synthesis of research evidence for domains of hearing loss, as reported by adults with hearing loss and their communication partners.   Trends Hear. 2017;21:2331216517734088. doi:10.1177/2331216517734088 PubMedGoogle Scholar
    23.
    Ventry  IM, Weinstein  BE.  The Hearing Handicap Inventory for the Elderly: a new tool.   Ear Hear. 1982;3(3):128-134. doi:10.1097/00003446-198205000-00006 PubMedGoogle ScholarCrossref
    24.
    Ramsden  RT.  History of cochlear implantation.   Cochlear Implants Int. 2013;14(suppl 4):S3-S5. doi:10.1179/1467010013Z.000000000140 PubMedGoogle ScholarCrossref
    25.
    The University of Texas School of Public Health. Search filters for various databases: Ovid Medline. Accessed March 4, 2019. http://libguides.sph.uth.tmc.edu/search_filters/ovid_medline_filters
    26.
    DeJean  D, Giacomini  M, Simeonov  D, Smith  A.  Finding qualitative research evidence for health technology assessment.   Qual Health Res. 2016;26(10):1307-1317. doi:10.1177/1049732316644429 PubMedGoogle ScholarCrossref
    27.
    World Health Organization.  International Classification of Functioning, Disability and Health: ICF. World Health Organization; 2001.
    28.
    World Health Organization. Brief ICF core set for hearing loss. February 2012. Accessed March 4, 2019. https://www.icf-research-branch.org/icf-core-sets/send/10-otherhealthconditions/171-brief-icf-core-set-for-hearing-loss
    29.
    World Health Organization. Comprehensive ICF core set for hearing loss. February 2012. Accessed March 4, 2019. https://www.icf-research-branch.org/icf-core-sets/send/10-otherhealthconditions/172-comprehensive-icf-core-set-for-hearing-oss
    30.
    Perlis  N, Krahn  M, Alibhai  S,  et al.  Conceptualizing global health-related quality of life in bladder cancer.   Qual Life Res. 2014;23(8):2153-2167. doi:10.1007/s11136-014-0685-9 PubMedGoogle ScholarCrossref
    31.
    Krahn  M, Ritvo  P, Irvine  J,  et al.  Construction of the Patient-Oriented Prostate Utility Scale (PORPUS): a multiattribute health state classification system for prostate cancer.   J Clin Epidemiol. 2000;53(9):920-930. doi:10.1016/S0895-4356(00)00211-0 PubMedGoogle ScholarCrossref
    32.
    Fitzpatrick  EM, Fournier  P, Séguin  C, Armstrong  S, Chénier  J, Schramm  D.  Users’ perspectives on the benefits of FM systems with cochlear implants.   Int J Audiol. 2010;49(1):44-53. doi:10.3109/14992020903202512 PubMedGoogle ScholarCrossref
    33.
    Hotton  M, Bergeron  F.  User’s perspective of benefits of frequency-lowering hearing aids and electric acoustic stimulation cochlear implants in daily life.   Technol Disabil. 2017;29(4):199-209. doi:10.3233/TAD-170186 Google ScholarCrossref
    34.
    McRackan  TR, Velozo  CA, Holcomb  MA,  et al.  Use of adult patient focus groups to develop the initial item bank for a cochlear implant quality-of-life instrument.   JAMA Otolaryngol Head Neck Surg. 2017;143(10):975-982. doi:10.1001/jamaoto.2017.1182 PubMedGoogle ScholarCrossref
    35.
    Finlay  L, Molano-Fisher  P.  “Transforming” self and world: a phenomenological study of a changing lifeworld following a cochlear implant.   Med Health Care Philos. 2008;11(3):255-267. doi:10.1007/s11019-007-9116-9 PubMedGoogle ScholarCrossref
    36.
    Zhao  F, Stephens  SD, Sim  SW, Meredith  R.  The use of qualitative questionnaires in patients having and being considered for cochlear implants.   Clin Otolaryngol Allied Sci. 1997;22(3):254-259. doi:10.1046/j.1365-2273.1997.00036.x PubMedGoogle ScholarCrossref
    37.
    Zhao  F, Bai  Z, Stephens  D.  The relationship between changes in self-rated quality of life after cochlear implantation and changes in individual complaints.   Clin Otolaryngol. 2008;33(5):427-434. doi:10.1111/j.1749-4486.2008.01773.x PubMedGoogle ScholarCrossref
    38.
    Ibrahim  MA.  The joy of cochlear implants.   BMJ. 2014;348:g2019. doi:10.1136/bmj.g2019 PubMedGoogle ScholarCrossref
    39.
    Fournier  P, Fitzpatrick  E, Seguin  C, Armstrong  S, Chenier  J, Schramm  D.  The FM Benefit Counseling Tool (FM-BCT): initial stages of the development of a tool for assessing the benefit of FM amplication from the perspective of adult cochlear implant users.   Can J Speech-Lang Pathol Audiol. 2012;36(2):150-167.Google Scholar
    40.
    Aguayo  MO, Coady  NF.  The experience of deafened adults: implications for rehabilitative services.   Health Soc Work. 2001;26(4):269-276. doi:10.1093/hsw/26.4.269 PubMedGoogle ScholarCrossref
    41.
    Bai  Z, Stephens  D.  Subjective outcome measures after cochlear implantation: overall measures.   Audiol Med. 2005;3(4):212-219. doi:10.1080/16513860500474476 Google ScholarCrossref
    42.
    Hughes  SE, Hutchings  HA, Rapport  FL, McMahon  CM, Boisvert  I.  Social connectedness and perceived listening effort in adult cochlear implant users: a grounded theory to establish content validity for a new patient-reported outcome measure.   Ear Hear. 2018;39(5):922-934. doi:10.1097/AUD.0000000000000553 PubMedGoogle ScholarCrossref
    43.
    Tucker  D, Compton  MV, Mankoff  L, Labban  J, Dudley  W.  Self-perceived biopsychosocial needs of late-deafened adults with cochlear implants: implications for aural rehabilitation.   J Acad Rehabilitative Audiol. 2014;47:26-41.Google Scholar
    44.
    Stephens  D, Ringdahl  A, Fitzmaurice  P.  Reported benefits and shortcomings of cochlear implantation by patients and their significant others.   Cochlear Implants Int. 2008;9(4):186-198. doi:10.1179/cim.2008.9.4.186 PubMedGoogle ScholarCrossref
    45.
    Bartel  LR, Greenberg  S, Friesen  LM,  et al.  Qualitative case studies of five cochlear implant recipients’ experience with music.   Cochlear Implants Int. 2011;12(1):27-33. doi:10.1179/146701010X486435 PubMedGoogle ScholarCrossref
    46.
    Ng  ZY, Lamb  B, Harrigan  S, Archbold  S, Athalye  S, Allen  S.  Perspectives of adults with cochlear implants on current CI services and daily life.   Cochlear Implants Int. 2016;17(suppl 1):89-93. doi:10.1080/14670100.2016.1157314 PubMedGoogle ScholarCrossref
    47.
    Hallam  R, Ashton  P, Sherbourne  K, Gailey  L.  Persons with acquired profound hearing loss (APHL): how do they and their families adapt to the challenge?   Health (London). 2008;12(3):369-388. doi:10.1177/1363459308090054PubMedGoogle ScholarCrossref
    48.
    Moeller  MP, Stille  LJ, Hughes  ML, Lusk  RP.  Perceived improvements and challenges following sequential bilateral cochlear implantation in children and adults.   Cochlear Implants Int. 2018;19(2):72-87. doi:10.1080/14670100.2017.1414021 PubMedGoogle ScholarCrossref
    49.
    Mestayer  K, Hamilton  T, Friedman  L,  et al.  No puedo escuchar: learn to say “I can’t hear” in multiple languages, and other key travel advice.   Hearing Health. 2017;2017:24-26.Google Scholar
    50.
    O’Connell  RB.  My new sonic reality, in harmony.   Hearing Health. 2017;33(1):20-21.Google Scholar
    51.
    Boswell  S.  Music with a cochlear implant: a personal perspective.   ASHA Lead. 2003;8(8):14-14.Google Scholar
    52.
    Golson  T.  Lost and found.   Hearing Health. 2015;31(4):32-33.Google Scholar
    53.
    Hallberg  LR-M, Ringdahl  A.  Living with cochlear implants: experiences of 17 adult patients in Sweden.   Int J Audiol. 2004;43(2):115-121. doi:10.1080/14992020400050016 PubMedGoogle ScholarCrossref
    54.
    Hogan  A, Stewart  M, Giles  E.  It’s a whole new ball game! employment experiences of people with a cochlear implant.   Cochlear Implants Int. 2002;3(1):54-67. doi:10.1179/cim.2002.3.1.54 PubMedGoogle ScholarCrossref
    55.
    Hogan  A.  Implant outcomes: towards a mixed methodology for evaluating the efficacy of adult cochlear implant programmes.   Disabil Rehabil. 1997;19(6):235-243. doi:10.3109/09638289709166533 PubMedGoogle ScholarCrossref
    56.
    Dritsakis  G, van Besouw  RM, O’ Meara  A.  Impact of music on the quality of life of cochlear implant users: a focus group study.   Cochlear Implants Int. 2017;18(4):207-215. doi:10.1080/14670100.2017.1303892 PubMedGoogle ScholarCrossref
    57.
    Newberry  E.  “I wish I had known to prepare for that”: wife, mother, and patient: the impact on family dynamics post-implantation.   Cochlear Implants Int. 2011;12(suppl 2):S24-S26. doi:10.1179/146701011X13074645127315 PubMedGoogle ScholarCrossref
    58.
    Dyer  HM.  From silence to sound: my quest to hear again.   Hear Loss Mag. 2011;32(4):8.Google Scholar
    59.
    Mäki-Torkko  EM, Vestergren  S, Harder  H, Lyxell  B.  From isolation and dependence to autonomy—expectations before and experiences after cochlear implantation in adult cochlear implant users and their significant others.   Disabil Rehabil. 2015;37(6):541-547. doi:10.3109/09638288.2014.935490 PubMedGoogle ScholarCrossref
    60.
    Pelizzone  M, Boëx-Spano  C, Sigrist  A,  et al.  First field trials with a portable CIS processor for the Ineraid multichannel cochlear implant.   Acta Otolaryngol. 1995;115(5):622-628. doi:10.3109/00016489509139377 PubMedGoogle ScholarCrossref
    61.
    East  CA, Cooper  HR.  Extra-cochlear implants: the patient’s viewpoint.   Br J Audiol. 1986;20(1):55-59. doi:10.3109/03005368609078998 PubMedGoogle ScholarCrossref
    62.
    Fitzpatrick  EM, Leblanc  S.  Exploring the factors influencing discontinued hearing aid use in patients with unilateral cochlear implants.   Trends Amplif. 2010;14(4):199-210. doi:10.1177/1084713810396511 PubMedGoogle ScholarCrossref
    63.
    Ross  L, Lyon  P.  Escaping a silent world: profound hearing loss, cochlear implants and household interaction.   Int J Consum Stud. 2007;31:357-362. doi:10.1111/j.1470-6431.2006.00561.x Google ScholarCrossref
    64.
    Neria  CM.  Emerging Adults with Cochlear Implants: Their Experiences and Lifeworlds. Chapman University; 2011.
    65.
    Rembar  S, Lind  O, Arnesen  H, Helvik  A-S.  Effects of cochlear implants: a qualitative study.   Cochlear Implants Int. 2009;10(4):179-197. doi:10.1179/cim.2009.10.4.179 PubMedGoogle ScholarCrossref
    66.
    Snell  L.  Documenting the lived experiences of young adult cochlear implant users: “feeling” sound, fluidity and blurring boundaries.   Disabil Soc. 2015;30(3):340-352. doi:10.1080/09687599.2015.1014086 Google ScholarCrossref
    67.
    Buhagiar  R, Lutman  M.  Development of a quality-of-life measure for adult patients with sequential bilateral cochlear implants.   Cochlear Implants Int. 2011;12(suppl 2):S44-S46. doi:10.1179/146701011X13074645127559PubMedGoogle ScholarCrossref
    68.
    Finke  M, Bönitz  H, Lyxell  B, Illg  A.  Cochlear implant effectiveness in postlingual single-sided deaf individuals: what’s the point?   Int J Audiol. 2017;56(6):417-423. doi:10.1080/14992027.2017.1296595 PubMedGoogle ScholarCrossref
    69.
    Adler  JM.  Bringing the (disabled) body to personality psychology: a case study of Samantha.   J Pers. 2018;86(5):803-824. doi:10.1111/jopy.12364 PubMedGoogle ScholarCrossref
    70.
    Duchesne  L, Millette  I, Bhérer  M, Gobeil  S.  Auditory performance and subjective benefits in adults with congenital or prelinguistic deafness who receive cochlear implants during adulthood.   Cochlear Implants Int. 2017;18(3):143-152. doi:10.1080/14670100.2017.1290925 PubMedGoogle ScholarCrossref
    71.
    Tyler  RS.  Advantages of disadvantages expected and reported by cochlear implant patients.   Am J Otol. 1994;15(4):523-531.PubMedGoogle Scholar
    72.
    Tyler  RS, Kelsay  D.  Advantages and disadvantages reported by some of the better cochlear-implant patients.   Am J Otol. 1990;11(4):282-289.PubMedGoogle Scholar
    73.
    Mestayer  K, Vernon  J.  Advantage, hearing loss.   Hear Health. 2017;33(2):34-35.Google Scholar
    74.
    Jeffs  E, Redfern  K, Stanfield  C,  et al.  A pilot study to explore the experiences of congenitally or early profoundly deafened candidates who receive cochlear implants as adults.   Cochlear Implants Int. 2015;16(6):312-320. doi:10.1179/1754762815Y.0000000011 PubMedGoogle ScholarCrossref
    75.
    Gomersall  PA, Baguley  DM, Carlyon  RP.  A cross-sectional questionnaire study of tinnitus awareness and impact in a population of adult cochlear implant users.   Ear Hear. 2019;40(1):135-142. doi:10.1097/AUD.0000000000000601PubMedGoogle ScholarCrossref
    76.
    Pope  RW.  4 Decades of coping with Ménière’s disease + 2 cochlear implants = 6 insights into hearing.   Hear Health. 2017;33(4):22-23.Google Scholar
    77.
    Gatehouse  S, Noble  W.  The Speech, Spatial and Qualities of Hearing Scale (SSQ).   Int J Audiol. 2004;43(2):85-99. doi:10.1080/14992020400050014 PubMedGoogle ScholarCrossref
    78.
    Hinderink  JB, Krabbe  PFM, Van Den Broek  P.  Development and application of a health-related quality-of-life instrument for adults with cochlear implants: the Nijmegen Cochlear Implant questionnaire.   Otolaryngol Head Neck Surg. 2000;123(6):756-765. doi:10.1067/mhn.2000.108203 PubMedGoogle ScholarCrossref
    79.
    McRackan  TR, Hand  BN, Velozo  CA, Dubno  JR; Cochlear Implant Quality of Life Development Consortium.  Development of the Cochlear Implant Quality of Life Item Bank.   Ear Hear. 2019;40(4):1016-1024. doi:10.1097/AUD.0000000000000684 PubMedGoogle ScholarCrossref
    80.
    McRackan  TR, Hand  BN, Velozo  CA, Dubno  JR; Cochlear Implant Quality of Life Development Consortium.  Cochlear Implant Quality of Life (CIQOL): development of a profile instrument (CIQOL-35 Profile) and a global measure (CIQOL-10 Global).   J Speech Lang Hear Res. 2019;62(9):3554-3563. doi:10.1044/2019_JSLHR-H-19-0142 PubMedGoogle ScholarCrossref
    ×