Interpreting parental proxy reports of (health-related) quality of life for children with unilateral cochlear implants

Sach, Tracey; Barton, Garry

doi:10.1016/j.ijporl.2006.11.011

Cited by 46 publications

(50 citation statements)

References 31 publications

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“…Factors associated with poorer QoL outcomes included use of hearing aids (rather than a CI) [Meyer et al, 2013;Necula et al, 2013], shorter experience with an implant [Loy et al, 2010], older age at implantation [Necula et al, 2013;Schorr et al, 2009;Stacey et al, 2006;Warner-Czyz et al, 2011], additional developmental comorbidities [Sach and Barton, 2007;Edwards et al, 2012], male gender [Sach and Barton, 2007], lower auditory perception [Sach and Barton, 2007], lower parental educational level [Sach and Barton, 2007], and reduced oral communication by the child [FortunatoTavares et al, 2012].…”

Section: Summary Of Results For Childrenmentioning

confidence: 99%

“…Eight studies reported on generic health utility metrics, which included KINDL ® [Huber, 2005;Loy et al, 2010;Warner-Czyz et al, 2009, visual analog scale (VAS) [Clark et al, 2012;Sach and Barton, 2007], Quality of Well-Being Scale (QWB) [Clark et al, 2012], Child Health and Illness Profile (CHIP) child edition [Clark et al, 2012;Meserole et al, 2014], European Quality of Life Questionnaire in 5 domains (EQ5D) [Clark et al, 2012;Sach and Barton, 2007], Satisfaction with Life Scale (SWLS) [Spencer et al, 2012], and EuroQoL VAS [Sach and Barton, 2007]. A comprehensive review of these surveys is beyond the subject of the current paper and may be found elsewhere [Froberg and Kane, 1989;Zullig et al, 2010].…”

Section: Generic Instruments In Childrenmentioning

confidence: 99%

See 1 more Smart Citation

Quality of Life and Cost-Effectiveness of Cochlear Implants: A Narrative Review

et al. 2017

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Objectives: To review evidence regarding the health-related quality of life (HRQoL) and cost-effectiveness of unilateral and bilateral cochlear implantation (CI) among children and adults with severe-to-profound hearing loss. Study Design: Narrative review. Methods: Publications related to quality of life (QoL) and costs of care in CI were acquired through searches in English-language databases. Studies were included if they had identified the HRQoL attainment, cost of care, cost-utility, or cost-effectiveness associated with CI. Results: 57 studies were critically reviewed. The QoL outcome metrics used in these articles were divided into 2 categories - generic and condition specific. In studies investigating children, many reported no significant difference in QoL attainment between CI recipients and normal-hearing peers. In adults, significant improvements in QoL after implantation and higher QoL than in their nonimplanted (hearing-aided) peers were frequently reported. Studies involving an older adult cohort reported significant improvement in QoL after implantation, which was often independent of audiological performance. Overall, the calculated cost-utility ratios consistently met the threshold of cost acceptance, indicating acceptable values for expenditures on CI. Conclusions: Considerable work has been done on the QoL attainment and health economic implications of CI. Unilateral CI across all age groups leads to reported sustained benefits in the recipients' overall and disease-specific QoL. With increased cost associated with bilateral CI, further study is needed to characterize its costs and benefits with respect to the recipients' health, well-being, and contributions to society.

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Section: Summary Of Results For Childrenmentioning

confidence: 99%

Section: Generic Instruments In Childrenmentioning

confidence: 99%

Quality of Life and Cost-Effectiveness of Cochlear Implants: A Narrative Review

et al. 2017

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“…washing and dressing) which may not be applicable given that children who have cochlear implants are increasingly implanted around their first birthday. For example, Sach and Barton (2007) assessed QoL in children with cochlear implants (mean age 9.2 years) using a generic QoL measure, the EuroQol (Rabin & deCharro, 2001). The authors found no significant changes on the measure 3 from pre-to post-implantation, and therefore inferred that "parents rejected the notion that deafness was a HRQL [health related quality of life] issue" (Sach & Barton, 2007, p.443).…”

Section: Quality Of Life Assessmentmentioning

confidence: 99%

Brief Assessment of Parental Perception (BAPP): Development and validation of a new measure for assessing paediatric outcomes after bilateral cochlear implantation

Samuel

Gamble

Cullington

et al. 2016

International Journal of Audiology

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ObjectiveIn contrast to previous clinical practice, current guidelines recommend bilateral cochlear implantation in children, resulting in a cohort of children who initially received one implant, but have subsequently had a second, contralateral implant. This study aimed to explore satisfaction and quality of life in children implanted simultaneously or sequentially. DesignA novel measure of satisfaction and quality of life following paediatric bilateral cochlear implantation (the Brief Assessment of Parental Perception; BAPP) was developed and preliminary validation undertaken as part of a large, national project of bilateral implantation. Children's parents completed the measure yearly for up to three years following implantation. Study SampleChildren from 14 UK implant centres were recruited into the study; data were available for 410 children one year post-implantation. ResultsThe BAPP was found to have good face and convergent validity, and internal consistency. Results indicated very high levels of satisfaction with the devices, and improvements in quality of life. However there was evidence that children implanted sequentially were less willing to wear their second implant in the first two years than those children receiving simultaneous implants. ConclusionSimultaneous and sequential cochlear implants have a positive impact on the quality of life of deaf children. 2 IntroductionIn 2009, the United Kingdom National Institute for Health and Care Excellence (NICE) recommended that all suitable children be offered simultaneous bilateral cochlear implants (NICE, 2009). NICE also advised that children who were unilaterally implanted prior to the guidance should be offered a second implant if appropriate. When the guidance was published, NICE recommended that an audit of bilateral cochlear implantation be conducted. A consortium of 14 cochlear implant centres in the United Kingdom was formed to identify appropriate assessment measures to assess the benefit children receive from bilateral cochlear implants. This National Paediatric Bilateral Project (NPBP) consortium identified a number of clinical outcomes to be assessed: localisation of sound, speech recognition in quiet and background noise, speech production, listening, vocabulary, surgical data including complications, and parental perceptions of quality of life (Cullington, Bele, Brinton et al, 2013). One existing measure of quality of life (QoL), the Paediatric Cochlear Implantation: Parent Outcome Profile (POP; O'Neill, Lutman, Archbold, et al, 2004) was adopted for the project, the results of which, along with the clinical outcomes, are reported elsewhere. However, the need for an additional, brief, QoL of life measure was identified, and the development of this, along with selected results obtained from the project, form the focus of this paper. Quality of Life AssessmentQuality of life measures take two primary forms; generic and condition specific. Although there are a range of generic paediatric QoL measures available, they may not be suit...

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“…The questionnaire takes 2-5 min to complete. The EQ-5D has been designed and well validated in adults [30], but has also been validated for child populations [31][32][33][34]. For the EQ-VAS scores, pediatric norm values were described by Stolk et al [34].…”

Section: Outcome Measurementmentioning

confidence: 99%

“…The PedsQL is validated for children aged up to 18 years, but in the current cohort, about 30% of the patients were older than 18 years at follow-up. The validity of the proxy report version of the EQ-5D in children is confirmed for children aged up to 18 years, but the only validation study for the self-report version of the EQ-5D denies its validity in adolescents aged 10-18 years old [31,33,35]. Essink-Bot et al [34,35] found much lower EQ-5D norm values for the young adults aged 18-29 years than the norm values that were found by Stolk et al for children aged 5-15 years old.…”

Section: Strengths and Limitationsmentioning

confidence: 99%