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A systematic review of patient-reported outcome measures in paediatric otolaryngology

Published online by Cambridge University Press:  11 December 2017

J Powell*
Affiliation:
Department of Paediatric Otolaryngology, Great North Children's Hospital, Newcastle upon Tyne, UK Institute of Cellular Medicine, Newcastle University, UK
S Powell
Affiliation:
Department of Paediatric Otolaryngology, Great North Children's Hospital, Newcastle upon Tyne, UK
A Robson
Affiliation:
Department of Otolaryngology, North Cumbria University Hospitals, Carlisle, UK
*
Address for correspondence: Mr Jason Powell, Department of Paediatric Otolaryngology, Great North Children's Hospital, Newcastle upon Tyne NE1 4LP, UK Fax: +44 191 2231246 E-mail: jason.powell@doctors.org.uk
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Abstract

Background:

Recently, there has been increased emphasis on the development and application of patient-reported outcome measures. This drive to assess the impact of illness or interventions, from the patient's perspective, has resulted in a greater number of available questionnaires. The importance of selecting an appropriate patient-reported outcome measure is specifically emphasised in the paediatric population. The literature on patient-reported outcome measures used in paediatric otolaryngology was reviewed.

Methods:

A comprehensive literature search was conducted using the databases Medline, Embase, Cumulative Index to Nursing and Allied Health Literature, and PsycInfo, using the terms: ‘health assessment questionnaire’, ‘structured questionnaire’, ‘questionnaire’, ‘patient reported outcome measures’, ‘PROM’, ‘quality of life’ or ‘survey’, and ‘children’ or ‘otolaryngology’. The search was limited to English-language articles published between 1996 and 2016.

Results:

The search yielded 656 articles, of which 63 were considered relevant. This included general paediatric patient-reported outcome measures applied to otolaryngology, and paediatric otolaryngology disease-specific patient-reported outcome measures.

Conclusion:

A large collection of patient-reported outcome measures are described in the paediatric otolaryngology literature. Greater standardisation of the patient-reported outcome measures used in paediatric otolaryngology would assist in pooling of data and increase the validation of tools used.

Type
Review Articles
Copyright
Copyright © JLO (1984) Limited 2017 

Introduction

Over recent years, there has been an increased emphasis on the development and application of patient-reported outcome measures.Reference Nelson, Eftimovska, Lind, Hager, Wasson and Lindblad 1 This drive to assess the impact of illness or interventions, from the patient's perspective, has resulted in a large expansion of available questionnaires.Reference Dawson, Doll, Fitzpatrick, Jenkinson and Carr 2 Patient-reported outcome measures are usually designed to measure one of two broad themes, either patients’ perceptions of their general health, or their perceptions of their health in relation to specific diseases or conditions.

The selection of a patient-reported outcome measure requires careful consideration regarding the content of the questionnaire and its relevance to the intended patient group. An appropriate measure is one that is supported by published evidence demonstrating that it is: acceptable to patients, reliable, valid and responsive (sensitive to change).Reference Fitzpatrick, Davey, Buxton and Jones 3 In addition, evidence for these properties needs to have been obtained in a similar context, and on similar types of patients (in terms of age range, gender, and diagnostic or surgical category) to those whom the patient-reported outcome measure is to be applied.

The importance of selecting an appropriate patient-reported outcome measure is specifically emphasised in the paediatric population. Many adult-designed patient-reported outcome measures may contain items that are irrelevant to children (e.g. driving, financial outcomes), or use language and response categories that are not age-appropriate.

We therefore reviewed the current literature on patient-reported outcome measures used in paediatric otolaryngology. This included general paediatric patient-reported outcome measures applied to otolaryngology patients, and otolaryngology disease-specific patient-reported outcome measures.

Materials and methods

A comprehensive literature search was conducted on 14 December 2016 using the databases Medline, Embase, Cumulative Index to Nursing and Allied Health Literature, and PsycInfo. The search terms used were: ‘health assessment questionnaire’, ‘structured questionnaire’, ‘questionnaire’, ‘patient reported outcome measures’, ‘PROM’, ‘quality of life’ or ‘survey’, and ‘children’ or ‘otolaryngology’.

Results

The search yielded 656 articles. The results were limited to English-language articles published from 1996 to 2016; this yielded 562 articles. Removal of duplicates returned 395 articles. Of these, 82 article abstracts were screened; this yielded a total of 63 relevant articles. Searching the bibliographies of these articles identified further articles that were reviewed.

Disease-specific patient-reported outcome measures

A large number of questionnaires were identified related to the conditions of otitis media,Reference Brouwer, Maille, Rovers, Grobbee, Sanders and Schilder 4 Reference Habesoglu, Habesoglu, Deveci, Kulekci, Kalaycik and Gokceer 14 hearing loss,Reference Umansky, Jeffe and Lieu 15 Reference Lim, Xiang, Wong, Yuen and Li 18 obstructive sleep apnoea,Reference Franco, Rosenfeld and Rao 19 Reference de Serres, Derkay, Astley, Deyo, Rosenfeld and Gates 30 voice disorders,Reference Walz, Hubbell and Elmaraghy 31 , Reference Boseley, Cunningham, Volk and Hartnick 32 and sore throat and tonsillitis.Reference Thong, Davies, Murphy and Keogh 33 Reference Goldstein, Stewart, Witsell, Hannley, Weaver and Yueh 38 A number of other questionnaires were infrequently described, related to other specific otolaryngology conditions (Table I).Reference Hartnick, Giambra, Bissell, Fitton, Cotton and Parsons 39 , Reference Fraser, Montgomery, James, Wynne, MacGregor and Clement 40 Each tool was of a varying length and underwent variable degrees of validation (Table I). We also identified multiple institutional designed questionnaires, which underwent little or no validation.Reference McCormick, Ward, Roberson, Shah, Stachler and Brenner 41 Reference Boss and Thompson 43

Table I Disease-specific patient-reported outcome measures used in paediatric otolaryngology*

* Identified from the literature review.

General patient-reported outcome measures

The paediatric otolaryngology literature describes a large number of general patient-reported outcome measures that have been utilised.Reference Kubba, Swan and Gatehouse 8 , Reference Goldstein, Fatima, Campbell and Rosenfeld 20 , Reference Tran, Nguyen, Weedon and Goldstein 21 , Reference Goldstein, Stewart, Witsell, Hannley, Weaver and Yueh 38 , Reference Kubba, Swan and Gatehouse 44 Reference Boruk, Lee, Faynzilbert and Rosenfeld 64 Overall, these are extensively validated tools from a non-otolaryngology origin that have been applied to otolaryngology conditions or procedures (Table II).

Table II General patient-reported outcome measures used in paediatric otolaryngology*

* Identified from the literature review.

Discussion

We identified a large number of both disease-specific and general patient-reported outcome measures that have been used in the paediatric otolaryngology literature. Many publications used a mixture of a disease-specific patient-reported outcome measures and general patient-reported outcome measures. Disease-specific patient-reported outcome measures are usually more sensitive to differences in one organ system, compared with generic instruments. For otolaryngology, this may be particularly important to detect improvements with treatment. Nevertheless, general tools are important to patients and healthcare commissioners, as they measure more global changes in health status and allow comparison with other conditions.Reference Nelson, Eftimovska, Lind, Hager, Wasson and Lindblad 1 Reference Fitzpatrick, Davey, Buxton and Jones 3

A large number of disease-specific patient-reported outcome measures were identified for the five conditions of otitis media, hearing loss, obstructive sleep apnoea, voice disorders, and sore throat and tonsillitis, which not unsurprisingly are the more common paediatric otolaryngology presentations.

In cases of otitis media, the Otitis Media-6 (‘OM-6’) questionnaire was by far the most extensively validated tool.Reference Brouwer, Maille, Rovers, Grobbee, Sanders and Schilder 4 Reference Rosenfeld, Goldsmith, Tetlus and Balzano 11 The Otitis Media Outcome-22 (‘OMO-22’) questionnaire was another prominent tool.Reference Richards and Giannoni 10 , Reference Alsarraf, Jung, Perkins, Crowley and Gates 12 These tools were principally discriminated by their number of questions, providing a trade-off between response rate and sensitivity to change (lower in longer tools), versus the collection of what may be important information (easier in longer tools). A specific chronic suppurative otitis media tool was also identified, the Chronic Otitis Media-5 (‘COM-5’) survey.Reference Vlastos, Kandiloros, Manolopoulos, Ferekidis and Yiotakis 13 , Reference Habesoglu, Habesoglu, Deveci, Kulekci, Kalaycik and Gokceer 14

For hearing loss, more frequently generic quality of life (QoL) measures were used. However, disease-specific tools were also described; these included the adolescent-completed Hearing Environments and Reflection on Quality of Life (‘HEAR-QL’) questionnaire,Reference Umansky, Jeffe and Lieu 15 the Youth Quality of Life Instrument – Deaf and Hard of Hearing (‘YQOL-DHH’) module,Reference Patrick, Edwards, Skalicky, Schick, Topolski and Kushalnagar 16 and the caregiver-reported Paediatric Hearing Impairment Caregiver Experience (‘PHICE’) questionnaire.Reference Meinzen-Derr, Lim, Choo, Buyniski and Wiley 17 , Reference Lim, Xiang, Wong, Yuen and Li 18 All of these are fairly lengthy questionnaires related to hearing and general QoL.

A number of obstructive sleep apnoea specific health-related QoL measure were identified. Of these, the Obstructive Sleep Apnea-18 (‘OSA-18’) questionnaire, which was first described by Franco et al.,Reference Franco, Rosenfeld and Rao 19 was the most widely used and validated QoL survey for the assessment of paediatric obstructive sleep apnoea.Reference Goldstein, Fatima, Campbell and Rosenfeld 20 Reference Kang, Weng, Yeh, Lee and Hsu 25 A number of other validated tools have also been described.Reference Goldstein, Stefanov, Graw-Panzer, Fahmy, Fishkin and Jackson 26 Reference de Serres, Derkay, Astley, Deyo, Rosenfeld and Gates 30 Once again, the greatest discriminator was the length and form of the tool. The Clinical Assessment Score-15 (‘CAS-15’) stood out as the only clinic-completed tool identified, which included clinical and examination findings.

The literature concerning paediatric voice specific questionnaires was dominated by three frequently used tools, adapted from previously validated adult forms: the Pediatric Voice-Related Quality-of-Life (‘PVRQOL’) survey,Reference Walz, Hubbell and Elmaraghy 31 , Reference Boseley, Cunningham, Volk and Hartnick 32 the Paediatric Vocal Handicap Index (‘pVHI’)Reference Zur, Cotton, Kelchner, Baker, Weinrich and Lee 65 and the Pediatric Voice Outcomes Survey (‘PVOS’).Reference Walz, Hubbell and Elmaraghy 31 , Reference Hartnick 66 , Reference Merati, Keppel, Braun, Blumin and Kerschner 67

Paediatric throat health related QoL was almost entirely reported on using the Paediatric Throat Disorders Outcome Test (‘T-14’).Reference Thong, Davies, Murphy and Keogh 33 Reference Soni-Jaiswal, Anderco and Kumar 37 Designed by Hopkins et al.,Reference Hopkins, Fairley, Yung, Hore, Balasubramaniam and Haggard 34 this 14-item disease-specific questionnaire has been extensively validated and reported upon in children. The only other identified measure was the infrequently used Tonsil and Adenoid Health Status Instrument (‘TAHSI’), from which the Paediatric Throat Disorders Outcome Test derives many question items.Reference Goldstein, Stewart, Witsell, Hannley, Weaver and Yueh 38 A number of other questionnaires were infrequently described, including the Pediatric Tracheotomy Health Status Instrument (‘PTHSI’)Reference Hartnick, Giambra, Bissell, Fitton, Cotton and Parsons 39 and the Post-Operative Pinnaplasty Questionnaire (‘POPQ’).Reference Fraser, Montgomery, James, Wynne, MacGregor and Clement 40

A number of general patient-reported outcome measures are described in the paediatric otolaryngology literature. The Glasgow Children's Benefit Inventory (‘GCBI’) was developed by Kubba et al.Reference Kubba, Swan and Gatehouse 44 to assess health-related QoL pre- and post-intervention, and has been extensively validated and used in a number of otolaryngology interventions.Reference Langille and El-Hakim 45 Reference Schwentner, Schwentner, Schmutzhard, Radmayr, Grabher and Sprinzl 48 The less widespread use of this tool outside otolaryngology limits the global comparability of its findings with other non-otolaryngology interventions, which may be of importance to certain groups such as commissioners.

Tools such as the Pediatric Quality of Life Inventory (‘PedsQL’) have also been extensively used in otolaryngology, and in other specialties. It gives a global health overview, and usefully has two forms: the parent proxy report form and the age-specific child self-report form.Reference Naiboglu, Kulekci, Kalaycik, Sheidaei, Toros and Egeli 49 Reference Lindman, Lewis, Accortt and Wiatrak 51

Similarly, the KINDL-R questionnaire for measuring health-related QoL in children and adolescents,Reference Loy, Warner-Czyz, Tong, Tobey and Roland 60 , Reference Morettin, Santos, Stefanini, Antonio, Bevilacqua and Cardoso 61 the Child Health Questionnaire (‘CHQ’)Reference Goldstein, Stewart, Witsell, Hannley, Weaver and Yueh 38 , Reference Georgalas, Tolley and Kanagalingam 54 Reference Cunningham, Chiu, Landgraf and Gliklich 56 and the Child Behavior Checklist (‘CBCL’)Reference Goldstein, Fatima, Campbell and Rosenfeld 20 , Reference Tran, Nguyen, Weedon and Goldstein 21 , Reference Mazefsky, Anderson, Conner and Minshew 62 are general patient-reported outcome measures that have different forms for various age groups. These tools have the benefit of age-appropriate questions, but their use would potentially limit comparison of the findings outside of that age group.

Other generic tools have been used in otolaryngology and are completed by the caregiver, such as the TNO-AZL (Netherlands Organisation for Applied Scientific Research Academic Medical Centre) Preschool Quality of Life Questionnaire (‘TAPQOL’), specifically designed for pre-school children.Reference Kubba, Swan and Gatehouse 8 , Reference Raat, Mohangoo and Grootenhuis 58 , Reference Raat, Botterweck, Landgraf, Hoogeveen and Essink-Bot 59 Several generic tools have been described to specifically assess the impact of a disease on the family or caregiver, such as the Pediatric Quality of Life Inventory Family Impact survey,Reference Varni, Sherman, Burwinkle, Dickinson and Dixon 52 , Reference Blank, Grindler, Schulz, Witsell and Lieu 53 the Parenting Stress Index Short Form (‘PSI-SF’)Reference Davies, Batra, Mehanna and Keogh 63 and the Caregiver Impact Questionnaire (‘CIQ’).Reference Boruk, Lee, Faynzilbert and Rosenfeld 64

There were several incidences of patient-reported outcome measures being used inappropriately in the paediatric otolaryngology literature. We found instances where the wording of questionnaires was changed. It is important to note that the wording of a validated patient-reported outcome measure should not be changed because even relatively small alterations can make a considerable difference to the meaning of the questions and consequently to the measurement properties of a questionnaire.Reference Dawson, Doll, Fitzpatrick, Jenkinson and Carr 2 , Reference Fitzpatrick, Davey, Buxton and Jones 3

We also identified numerous cases where patient-reported outcome measures were applied to very different groups or situations to those on which they were validated; for example, the use of adult patient-reported outcome measures, completed by caregivers on the child's behalf, or the use of adult patient-reported outcome measures in adolescents. The term ‘paediatric’ covers a broad range, and while many of the general patient-reported outcome measures had multiple age-appropriate questions, many of the disease-specific questionnaires were only validated for specific age ranges. Furthermore, patient-reported outcome measures data need to be obtained from relevant patients at the same point in time relative to the date of an intervention or event of interest.Reference Dawson, Doll, Fitzpatrick, Jenkinson and Carr 2 , Reference Fitzpatrick, Davey, Buxton and Jones 3

It should also be noted that a number of the patient-reported outcome measures, particularly the general patient-reported outcome measures, had different versions available, and this needs to be considered when comparing to previously published studies using older versions.

We also identified a distinct lack of consistency regarding the methods for the development of patient-reported outcome measures in paediatric otolaryngology. The methods of validation contained many similarities, but were not universal; statistical methods and validation samples sizes varied radically.

The availability of multiple disease-specific and general patient-reported outcome measures is useful to the paediatric otolaryngologist. However, more consistent use of a smaller number of tools would allow for greater standardisation, and would assist in the pooling of data from multiple institutions and studies.

Selecting the appropriate patient-reported outcome measure can be challenging. This is emphasised in the otolaryngology literature from the extensive number of tools used for certain conditions; for example, otitis media.Reference Brouwer, Maille, Rovers, Grobbee, Sanders and Schilder 4 Reference Habesoglu, Habesoglu, Deveci, Kulekci, Kalaycik and Gokceer 14

When assessing a patient-reported outcome measure, it is crucial to review the six key areas of: validity, test–retest reliability, precision, responsiveness, acceptance and response rate, and feasibility.Reference Nelson, Eftimovska, Lind, Hager, Wasson and Lindblad 1 Reference Fitzpatrick, Davey, Buxton and Jones 3 Regarding validity, one should consider whether the patient-reported outcome measure assesses what it is supposed to. Changes in patient-reported outcome measure scores can be caused by a multitude of factors, not just the intervention that is being measured. With regard to test–retest reliability, do respondents score similarly on different occasions? Precision is epitomised by the disease-specific or general patient-reported outcome measure debate; can the patient-reported outcome measure discriminate a disease or intervention from a control group? Linking in with precision, responsiveness refers to the ability to measure change after an intervention or change in disease state. Acceptance and response rate are particularly important in paediatric questionnaires. Are the questions appropriate for children (e.g. do they contain questions about employment)? Linking in with acceptance and response rate, a long questionnaire may not be feasible in many clinic settings.

It is also crucial to review the literature on the previous use of any patient-reported outcome measure, considering particularly the age groups that it is appropriate for and whether there are reference data for the comparison group.

It is impossible to have one patient-reported outcome measure that covers all potential research or clinical questions posed in paediatric otolaryngology. For example, the 22-item Otitis Media Outcome-22 questionnaire provides more information than the 6-item Otitis Media-6 questionnaire, but may have a reduced response rate given its length and reduced sensitivity to change.Reference Brouwer, Maille, Rovers, Grobbee, Sanders and Schilder 4

Researchers and clinicians should aim to use the most appropriate patient-reported outcome measure for their question, but also consider the comparability with previous studies on that condition. We would advocate, whenever possible, using a disease-specific and/or general patient-reported outcome measure that is frequently cited for the condition of interest, and ensure it is suitably validated, with relevant reference data.

Footnotes

Presented at the Paediatric Otolaryngology Northern Deanery meeting, 14 March 2017, Carlisle, UK.

References

1 Nelson, EC, Eftimovska, E, Lind, C, Hager, A, Wasson, JH, Lindblad, S. Patient reported outcome measures in practice. BMJ 2015;350:g7818 CrossRefGoogle ScholarPubMed
2 Dawson, J, Doll, H, Fitzpatrick, R, Jenkinson, C, Carr, AJ. The routine use of patient reported outcome measures in healthcare settings. BMJ 2010;340:c186 CrossRefGoogle ScholarPubMed
3 Fitzpatrick, R, Davey, C, Buxton, MJ, Jones, DR. Evaluating patient-based outcome measures for use in clinical trials. Health Technol Assess 1998;2:174 CrossRefGoogle ScholarPubMed
4 Brouwer, CN, Maille, AR, Rovers, MM, Grobbee, DE, Sanders, EA, Schilder, AG. Health-related quality of life in children with otitis media. Int J Pediatr Otorhinolaryngol 2005;69:1031–41CrossRefGoogle ScholarPubMed
5 Timmerman, AA, Meesters, CM, Speyer, R, Anteunis, LJ. Psychometric qualities of questionnaires for the assessment of otitis media impact. Clin Otolaryngol 2007;32:429–39CrossRefGoogle ScholarPubMed
6 Heidemann, CH, Godballe, C, Kjeldsen, AD, Johansen, EC, Faber, CE, Lauridsen, HH. The Otitis Media-6 questionnaire: psychometric properties with emphasis on factor structure and interpretability. Health Qual Life Outcomes 2013;11:201 CrossRefGoogle ScholarPubMed
7 Grindler, DJ, Blank, SJ, Schulz, KA, Witsell, DL, Lieu, JE. Impact of otitis media severity on children's quality of life. Otolaryngol Head Neck Surg 2014;151:333–40CrossRefGoogle ScholarPubMed
8 Kubba, H, Swan, IR, Gatehouse, S. Measuring quality of life in preschool children with sore throats and otitis media using the TAPQOL questionnaire. Otolaryngol Head Neck Surg 2005;132:647–52CrossRefGoogle ScholarPubMed
9 Lee, J, Witsell, DL, Dolor, RJ, Stinnett, S, Hannley, M. Quality of life of patients with otitis media and caregivers: a multicenter study. Laryngoscope 2006;116:1798–804CrossRefGoogle ScholarPubMed
10 Richards, M, Giannoni, C. Quality-of-life outcomes after surgical intervention for otitis media. Arch Otolaryngol Head Neck Surg 2002;128:776–82CrossRefGoogle ScholarPubMed
11 Rosenfeld, RM, Goldsmith, AJ, Tetlus, L, Balzano, A. Quality of life for children with otitis media. Arch Otolaryngol Head Neck Surg 1997;123:1049–54CrossRefGoogle ScholarPubMed
12 Alsarraf, R, Jung, CJ, Perkins, J, Crowley, C, Gates, GA. Otitis media health status evaluation: a pilot study for the investigation of cost-effective outcomes of recurrent acute otitis media treatment. Ann Otol Rhinol Laryngol 1998;107:120–8CrossRefGoogle ScholarPubMed
13 Vlastos, IM, Kandiloros, D, Manolopoulos, L, Ferekidis, E, Yiotakis, I. Quality of life in children with chronic suppurative otitis media with or without cholesteatoma. Int J Pediatr Otorhinolaryngol 2009;73:363–9CrossRefGoogle ScholarPubMed
14 Habesoglu, TE, Habesoglu, M, Deveci, I, Kulekci, S, Kalaycik, C, Gokceer, T et al. Effect of type I tympanoplasty on the quality of life of children. Ann Otol Rhinol Laryngol 2011;120:326–30CrossRefGoogle ScholarPubMed
15 Umansky, AM, Jeffe, DB, Lieu, JE. The HEAR-QL: quality of life questionnaire for children with hearing loss. J Am Acad Audiol 2011;22:644–53Google ScholarPubMed
16 Patrick, DL, Edwards, TC, Skalicky, AM, Schick, B, Topolski, TD, Kushalnagar, P et al. Validation of a quality-of-life measure for deaf or hard of hearing youth. Otolaryngol Head Neck Surg 2011;145:137–45CrossRefGoogle ScholarPubMed
17 Meinzen-Derr, J, Lim, LH, Choo, DI, Buyniski, S, Wiley, S. Pediatric hearing impairment caregiver experience: impact of duration of hearing loss on parental stress. Int J Pediatr Otorhinolaryngol 2008;72:1693–703CrossRefGoogle ScholarPubMed
18 Lim, LH, Xiang, L, Wong, NL, Yuen, KC, Li, R. Validation of the Paediatric Hearing Impairment Caregiver Experience (PHICE) Questionnaire. Ann Acad Med Singapore 2014;43:362–70CrossRefGoogle ScholarPubMed
19 Franco, RA Jr, Rosenfeld, RM, Rao, M. First place--resident clinical science award 1999. Quality of life for children with obstructive sleep apnea. Otolaryngol Head Neck Surg 2000;123:916 CrossRefGoogle ScholarPubMed
20 Goldstein, NA, Fatima, M, Campbell, TF, Rosenfeld, RM. Child behavior and quality of life before and after tonsillectomy and adenoidectomy. Arch Otolaryngol Head Neck Surg 2002;128:770–5CrossRefGoogle ScholarPubMed
21 Tran, KD, Nguyen, CD, Weedon, J, Goldstein, NA. Child behavior and quality of life in pediatric obstructive sleep apnea. Arch Otolaryngol Head Neck Surg 2005;131:52–7CrossRefGoogle ScholarPubMed
22 Mitchell, RB. Adenotonsillectomy for obstructive sleep apnea in children: outcome evaluated by pre- and postoperative polysomnography. Laryngoscope 2007;117:1844–54CrossRefGoogle ScholarPubMed
23 Mitchell, RB, Kelly, J. Quality of life after adenotonsillectomy for SDB in children. Otolaryngol Head Neck Surg 2005;133:569–72CrossRefGoogle ScholarPubMed
24 Kuptanon, T, Chukumnerd, J, Leejakpai, A, Preutthipan, A. Reliability and validity of Thai version Quality of Life Questionnaire (OSA-18) for pediatric obstructive sleep apnea. J Med Assoc Thai 2015;98:464–71Google ScholarPubMed
25 Kang, KT, Weng, WC, Yeh, TH, Lee, PL, Hsu, WC. Validation of the Chinese version OSA-18 quality of life questionnaire in Taiwanese children with obstructive sleep apnea. J Formos Med Assoc 2014;113:454–62CrossRefGoogle ScholarPubMed
26 Goldstein, NA, Stefanov, DG, Graw-Panzer, KD, Fahmy, SA, Fishkin, S, Jackson, A et al. Validation of a clinical assessment score for pediatric sleep-disordered breathing. Laryngoscope 2012;122:2096–104CrossRefGoogle ScholarPubMed
27 Konka, A, Weedon, J, Goldstein, NA. Cost-benefit analysis of polysomnography versus Clinical Assessment Score-15 (CAS-15) for treatment of pediatric sleep-disordered breathing. Otolaryngol Head Neck Surg 2014;151:484–8CrossRefGoogle ScholarPubMed
28 Zojaji, R, Mirzadeh, M, Mazloum Farsi Baf, M, Khorashadizadeh, M, Sabeti, HR. The effect of adenotonsillectomy on children's quality of life. Iran J Otorhinolaryngol 2014;26:199205 Google ScholarPubMed
29 Georgalas, C, Babar-Craig, H, Arora, A, Narula, A. Health outcome measurements in children with sleep disordered breathing. Clin Otolaryngol 2007;32:268–74CrossRefGoogle ScholarPubMed
30 de Serres, LM, Derkay, C, Astley, S, Deyo, RA, Rosenfeld, RM, Gates, GA. Measuring quality of life in children with obstructive sleep disorders. Arch Otolaryngol Head Neck Surg 2000;126:1423–9CrossRefGoogle ScholarPubMed
31 Walz, PC, Hubbell, MP, Elmaraghy, CA. Voice related quality of life in pediatric patients with a history of prematurity. Int J Pediatr Otorhinolaryngol 2014;78:1010–14CrossRefGoogle ScholarPubMed
32 Boseley, ME, Cunningham, MJ, Volk, MS, Hartnick, CJ. Validation of the Pediatric Voice-Related Quality-of-Life survey. Arch Otolaryngol Head Neck Surg 2006;132:717–20CrossRefGoogle ScholarPubMed
33 Thong, G, Davies, K, Murphy, E, Keogh, I. Significant improvements in quality of life following paediatric tonsillectomy: a prospective cohort study. Ir J Med Sci 2017;186:419–25CrossRefGoogle ScholarPubMed
34 Hopkins, C, Fairley, J, Yung, M, Hore, I, Balasubramaniam, S, Haggard, M. The 14-item Paediatric Throat Disorders Outcome Test: a valid, sensitive, reliable, parent-reported outcome measure for paediatric throat disorders. J Laryngol Otol 2010;124:306–14CrossRefGoogle Scholar
35 Konieczny, K, Biggs, TC, Caldera, S. Application of the Paediatric Throat Disorders Outcome Test (T-14) for tonsillectomy and adenotonsillectomy. Ann R Coll Surg Engl 2013;95:410–14CrossRefGoogle ScholarPubMed
36 Konieczny, KM, Biggs, TC, Pringle, MB. A two-year follow-up observational study of the T-14 paediatric throat disorders outcome measure in tonsillectomy and adenotonsillectomy. Ann R Coll Surg Engl 2015;97:382–5CrossRefGoogle ScholarPubMed
37 Soni-Jaiswal, A, Anderco, I, Kumar, BN. Patient-reported outcomes in children suffering with mild to moderate tonsillitis versus those in children with severe tonsillitis. J Laryngol Otol 2014;128:981–5CrossRefGoogle ScholarPubMed
38 Goldstein, NA, Stewart, MG, Witsell, DL, Hannley, MT, Weaver, EM, Yueh, B et al. Quality of life after tonsillectomy in children with recurrent tonsillitis. Otolaryngol Head Neck Surg 2008;138:S916 CrossRefGoogle ScholarPubMed
39 Hartnick, CJ, Giambra, BK, Bissell, C, Fitton, CM, Cotton, RT, Parsons, SK. Final validation of the Pediatric Tracheotomy Health Status Instrument (PTHSI). Otolaryngol Head Neck Surg 2002;126:228–33CrossRefGoogle ScholarPubMed
40 Fraser, L, Montgomery, J, James, H, Wynne, DM, MacGregor, FB, Clement, WA et al. Validation of a family-centred outcome questionnaire for pinnaplasty: a cross-sectional pilot study. Clin Otolaryngol 2016;41:472–80CrossRefGoogle ScholarPubMed
41 McCormick, ME, Ward, E, Roberson, DW, Shah, RK, Stachler, RJ, Brenner, MJ. Life after tracheostomy: patient and family perspectives on teaching, transitions, and multidisciplinary teams. Otolaryngol Head Neck Surg 2015;153:914–20CrossRefGoogle ScholarPubMed
42 Connor, MP, Dion, GR, Borgman, M, Maturo, S. The pediatric sedation unit: a prospective analysis of parental satisfaction. Int J Pediatr Otorhinolaryngol 2014;78:2165–8CrossRefGoogle ScholarPubMed
43 Boss, EF, Thompson, RE. Patient experience in the pediatric otolaryngology clinic: does the teaching setting influence parent satisfaction? Int J Pediatr Otorhinolaryngol 2013;77:5964 CrossRefGoogle ScholarPubMed
44 Kubba, H, Swan, IR, Gatehouse, S. The Glasgow Children's Benefit Inventory: a new instrument for assessing health-related benefit after an intervention. Ann Otol Rhinol Laryngol 2004;113:980–6CrossRefGoogle ScholarPubMed
45 Langille, M, El-Hakim, H. Pediatric inferior turbinoplasty with or without adenoidectomy: preliminary report on improvement of quality of life, symptom control, and safety. J Otolaryngol Head Neck Surg 2011;40:420–6Google ScholarPubMed
46 Schwentner, I, Schmutzhard, J, Schwentner, C, Abraham, I, Hofer, S, Sprinzl, GM. The impact of adenotonsillectomy on children's quality of life. Clin Otolaryngol 2008;33:56–9CrossRefGoogle ScholarPubMed
47 de Wolf, MJ, Hol, MK, Mylanus, EA, Snik, AF, Cremers, CW. Benefit and quality of life after bone-anchored hearing aid fitting in children with unilateral or bilateral hearing impairment. Arch Otolaryngol Head Neck Surg 2011;137:130–8CrossRefGoogle ScholarPubMed
48 Schwentner, I, Schwentner, C, Schmutzhard, J, Radmayr, C, Grabher, G, Sprinzl, G et al. Validation of the German Glasgow children's benefit inventory. J Eval Clin Pract 2007;13:942–6CrossRefGoogle ScholarPubMed
49 Naiboglu, B, Kulekci, S, Kalaycik, C, Sheidaei, S, Toros, SZ, Egeli, E. Improvement in quality of life by adenotonsillectomy in children with adenotonsillar disease. Clin Otolaryngol 2010;35:383–9CrossRefGoogle ScholarPubMed
50 Garetz, SL, Mitchell, RB, Parker, PD, Moore, RH, Rosen, CL, Giordani, B et al. Quality of life and obstructive sleep apnea symptoms after pediatric adenotonsillectomy. Pediatrics 2015;135:e47786 CrossRefGoogle ScholarPubMed
51 Lindman, JP, Lewis, LS, Accortt, N, Wiatrak, BJ. Use of the Pediatric Quality of Life Inventory to assess the health-related quality of life in children with recurrent respiratory papillomatosis. Ann Otol Rhinol Laryngol 2005;114:499503 CrossRefGoogle ScholarPubMed
52 Varni, JW, Sherman, SA, Burwinkle, TM, Dickinson, PE, Dixon, P. The PedsQL Family Impact Module: preliminary reliability and validity. Health Qual Life Outcomes 2004;2:55 CrossRefGoogle ScholarPubMed
53 Blank, SJ, Grindler, DJ, Schulz, KA, Witsell, DL, Lieu, JE. Caregiver quality of life is related to severity of otitis media in children. Otolaryngol Head Neck Surg 2014;151:348–53CrossRefGoogle ScholarPubMed
54 Georgalas, C, Tolley, N, Kanagalingam, J. Measuring quality of life in children with adenotonsillar disease with the Child Health Questionnaire: a first U.K. study. Laryngoscope 2004;114:1849–55CrossRefGoogle ScholarPubMed
55 Baldassari, CM, Mitchell, RB, Schubert, C, Rudnick, EF. Pediatric obstructive sleep apnea and quality of life: a meta-analysis. Otolaryngol Head Neck Surg 2008;138:265–73CrossRefGoogle ScholarPubMed
56 Cunningham, MJ, Chiu, EJ, Landgraf, JM, Gliklich, RE. The health impact of chronic recurrent rhinosinusitis in children. Arch Otolaryngol Head Neck Surg 2000;126:1363–8CrossRefGoogle ScholarPubMed
57 Randhawa, PS, Cetto, R, Chilvers, G, Georgalas, C, Narula, AA. Long-term quality-of-life outcomes in children undergoing adenotonsillectomy for obstructive sleep apnoea: a longitudinal study. Clin Otolaryngol 2011;36:475–81CrossRefGoogle ScholarPubMed
58 Raat, H, Mohangoo, AD, Grootenhuis, MA. Pediatric health-related quality of life questionnaires in clinical trials. Curr Opin Allergy Clin Immunol 2006;6:180–5CrossRefGoogle ScholarPubMed
59 Raat, H, Botterweck, AM, Landgraf, JM, Hoogeveen, WC, Essink-Bot, ML. Reliability and validity of the short form of the child health questionnaire for parents (CHQ-PF28) in large random school based and general population samples. J Epidemiol Community Health 2005;59:7582 CrossRefGoogle ScholarPubMed
60 Loy, B, Warner-Czyz, AD, Tong, L, Tobey, EA, Roland, PS. The children speak: an examination of the quality of life of pediatric cochlear implant users. Otolaryngol Head Neck Surg 2010;142:247–53CrossRefGoogle ScholarPubMed
61 Morettin, M, Santos, MJ, Stefanini, MR, Antonio, F de L, Bevilacqua, MC, Cardoso, MR. Measures of quality of life in children with cochlear implant: systematic review. Braz J Otorhinolaryngol 2013;79:375–81CrossRefGoogle ScholarPubMed
62 Mazefsky, CA, Anderson, R, Conner, CM, Minshew, N. Child Behavior Checklist scores for school-aged children with autism: preliminary evidence of patterns suggesting the need for referral. J Psychopathol Behav Assess 2011;33:31–7CrossRefGoogle ScholarPubMed
63 Davies, K, Batra, K, Mehanna, R, Keogh, I. Pediatric epistaxis: epidemiology, management & impact on quality of life. Int J Pediatr Otorhinolaryngol 2014;78:1294–7CrossRefGoogle ScholarPubMed
64 Boruk, M, Lee, P, Faynzilbert, Y, Rosenfeld, RM. Caregiver well-being and child quality of life. Otolaryngol Head Neck Surg 2007;136:159–68CrossRefGoogle ScholarPubMed
65 Zur, KB, Cotton, S, Kelchner, L, Baker, S, Weinrich, B, Lee, L. Pediatric Voice Handicap Index (pVHI): a new tool for evaluating pediatric dysphonia. Int J Pediatr Otorhinolaryngol 2007;71:7782 CrossRefGoogle ScholarPubMed
66 Hartnick, CJ. Validation of a pediatric voice quality-of-life instrument: the pediatric voice outcome survey. Arch Otolaryngol Head Neck Surg 2002;128:919–22CrossRefGoogle ScholarPubMed
67 Merati, AL, Keppel, K, Braun, NM, Blumin, JH, Kerschner, JE. Pediatric Voice-Related Quality of Life: findings in healthy children and in common laryngeal disorders. Ann Otol Rhinol Laryngol 2008;117:259–62CrossRefGoogle ScholarPubMed
Figure 0

Table I Disease-specific patient-reported outcome measures used in paediatric otolaryngology*

Figure 1

Table II General patient-reported outcome measures used in paediatric otolaryngology*