Literature DB >> 32271362

Development of a Patient-Centered Functional Outcomes Questionnaire in Head and Neck Cancer.

Adrian Mendez1,2, Hadi Seikaly1,3, Dean Eurich4, Agnieszka Dzioba1,3, Daniel Aalto3,5,6, Martin Osswald1,3,4, Jeffrey R Harris1,3,4, Daniel A O'Connell1,3,4, Cathy Lazarus7,8, Mark Urken7,8, Ilya Likhterov7,8, Raymond L Chai7,8, Erika Rauscher8, Daniel Buchbinder8,9, Devin Okay8,9, Risto-Pekka Happonen6,10, Ilpo Kinnunen11, Heikki Irjala11, Tero Soukka6,10, Juhani Laine6,10.   

Abstract

Importance: Incorporation of patient perspectives, or patient-reported outcomes, in functional outcome measures has been gaining prominence in the literature on reconstructive surgery. Objective: To create and validate an instrument for measuring the main functional areas of concern for patients with head and neck cancer. Design, Setting, and Participants: This 4-phase mixed-methods qualitative study was conducted from July 1, 2013, to June 30, 2016, in a quaternary head and neck oncology center in Edmonton, Alberta, Canada. Patients were recruited from 3 Head and Neck Research Network sites: University of Alberta (Edmonton, Canada), Mount Sinai Health Network (New York, New York), and University of Turku Hospital (Turku, Finland). The inclusion criteria included 18 years of age or older, diagnosis of squamous cell carcinoma involving the subsites of the head and neck (ie, oral cavity, oropharynx, hypopharynx, and larynx), and at least 1 year since treatment completion. Those patients who were undergoing additional active treatment or with evidence of disease recurrence were excluded. Data were analyzed from July 1, 2013, to June 30, 2016. Main Outcomes and Measures: The primary outcome measures were the clinical correlation of the Edmonton-33 instrument scores with swallowing, speech, dry mouth, and chewing assessment outcomes.
Results: In total, 10 patients with head and neck cancer (mean age, 59.6 years; 6 men [60%]) were included in phase 1 of the study, 5 patients (mean age, 55.2 years) were included in phase 2, 10 patients were included in phase 3, and 25 patients with head and neck cancer (mean age, 62.6 years; 14 men [56%]) participated in the phase 4 validation. The Edmonton-33 instrument scores correlated strongly with the swallowing scores of the MD Anderson Dysphagia Inventory (r = 0.77; 95% CI, 0.49-1.0), the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-Head and Neck 35 (EORTC QLQ-H&N35) (r = -0.73; 95% CI, -1.0 to -0.44), and the modified barium swallow test (r = -0.60; 95% CI, -0.94 to -0.25). The instrument scores were also strongly correlated with the Speech Handicap Index scores (r = -0.64; 95% CI, -0.97 to -0.31), word intelligibility scores (r = 0.61; 95% CI, 0.27-0.95), and sentence intelligibility scores (r = 0.55; 95% CI, 0.19-0.91). A moderate to strong correlation was observed between the Edmonton-33 instrument and the EORTC QLQ-H&N35 scores in the dry mouth (r = -0.54; 95% CI, -0.91 to -0.18) and chewing (r = -0.45; 95% CI, -0.84 to -0.06) domains. The factor loading values for the domains of swallowing, speech, dry mouth, and chewing were all greater than 0.3. The mean factor loading values for the items related to swallowing were 0.71 (95% CI, 0.62-0.80) and for the items related to speech were 0.76 (95% CI, 0.72-0.80). The mean factor loading values for the items related to dry mouth were 0.71 (95% CI, 0.59-0.83) and for those related to chewing were 0.77 (95% CI, 0.69-0.85). Conclusions and Relevance: The Edmonton-33 appears to be a validated instrument that will allow patients with head and neck cancer to assess and report their own functional outcomes. It could serve as a single comprehensive measure for functional outcomes.

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Mesh:

Year:  2020        PMID: 32271362      PMCID: PMC7146527          DOI: 10.1001/jamaoto.2019.4788

Source DB:  PubMed          Journal:  JAMA Otolaryngol Head Neck Surg        ISSN: 2168-6181            Impact factor:   6.223


  11 in total

1.  The development and validation of a dysphagia-specific quality-of-life questionnaire for patients with head and neck cancer: the M. D. Anderson dysphagia inventory.

Authors:  A Y Chen; R Frankowski; J Bishop-Leone; T Hebert; S Leyk; J Lewin; H Goepfert
Journal:  Arch Otolaryngol Head Neck Surg       Date:  2001-07

2.  Domains selection for patient-reported outcomes: current activities and options for future methods.

Authors:  Peter S Tugwell; Ingemar F Petersson; Maarten Boers; Laure Gossec; John R Kirwan; Tamara Rader; Tessa C Sanderson; Mart A van de Laar; Erin Ueffing; James P Witter
Journal:  J Rheumatol       Date:  2011-08       Impact factor: 4.666

3.  What outcomes from pharmacologic treatments are important to people with rheumatoid arthritis? Creating the basis of a patient core set.

Authors:  T Sanderson; M Morris; M Calnan; P Richards; S Hewlett
Journal:  Arthritis Care Res (Hoboken)       Date:  2010-05       Impact factor: 4.794

4.  Patient perspective of measuring treatment efficacy: the rheumatoid arthritis patient priorities for pharmacologic interventions outcomes.

Authors:  T Sanderson; M Morris; M Calnan; P Richards; S Hewlett
Journal:  Arthritis Care Res (Hoboken)       Date:  2010-05       Impact factor: 4.794

5.  Comparison of speech and aesthetic outcomes in patients with maxillary reconstruction versus maxillary obturators after maxillectomy.

Authors:  Jana M Rieger; Judith A Lam Tang; Johan Wolfaardt; Jeffrey Harris; Hadi Seikaly
Journal:  J Otolaryngol Head Neck Surg       Date:  2011-02

6.  What patients consider important: temporal variations by early and late stage oral, oropharyngeal and laryngeal subsites.

Authors:  Christopher W Metcalfe; Derek Lowe; Simon N Rogers
Journal:  J Craniomaxillofac Surg       Date:  2013-10-08       Impact factor: 2.078

Review 7.  Methods of functional outcomes assessment following treatment of oral and oropharyngeal cancer: review of the literature.

Authors:  Alex M Mlynarek; Jana M Rieger; Jeffrey R Harris; Daniel A O'Connell; Khalid H Al-Qahtani; Khalid Ansari; Jason Chau; Hadi Seikaly
Journal:  J Otolaryngol Head Neck Surg       Date:  2008-02

8.  The use of patient-reported outcomes (PRO) within comparative effectiveness research: implications for clinical practice and health care policy.

Authors:  Sara Ahmed; Richard A Berzon; Dennis A Revicki; William R Lenderking; Carol M Moinpour; Ethan Basch; Bryce B Reeve; Albert W Wu
Journal:  Med Care       Date:  2012-12       Impact factor: 2.983

9.  Guidance for industry: patient-reported outcome measures: use in medical product development to support labeling claims: draft guidance.

Authors: 
Journal:  Health Qual Life Outcomes       Date:  2006-10-11       Impact factor: 3.186

10.  The CONSENSUS study: protocol for a mixed methods study to establish which outcomes should be included in a core outcome set for oropharyngeal cancer.

Authors:  Aoife Mi Waters; Catrin Tudur Smith; Bridget Young; Terry M Jones
Journal:  Trials       Date:  2014-05-13       Impact factor: 2.279

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