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Patient Concerns Inventory for head and neck cancer: Brazilian cultural adaptation
Rev Assoc Med B ras 2017; 63(4):311-319 311
ORIGINAL ARTICLE
Patient Concerns Inventory for head and neck cancer: Brazilian
cultural adaptation
Ivy Jungerman1, Julia Toyota2, Neyller Patriota Montoni3, Elma Heitmann Mares Azevedo4, Renata Ligia V ieira Guedes3,
Aline Damascena5, Derek Lowe6, José Guilherme Vartanian2*, Simon N. Rogers7, L uiz Paulo Kowalski2
1Department of Radiology and Oncology, Faculdade de Medicina da Universidade de São Paulo (USP), São Paulo, SP, Brazil
2Head and Neck Surgery and Otorhinolaryngology Department, A.C.Camargo Cancer Center, São Paulo, SP, Brazil
3Voice, Speech and Swallowing Rehabilitation Department, A.C.Camargo Cancer Center, São Paulo, SP, Brazil
4Phonoaudiology Department, Universidade Federal da Paraíba, João Pessoa, PB, Brazil
5Bioinformatics and Biostatistics Department, A.C.Camargo Cancer Center, São Paulo, SP, Brazil
6Evidence-Based Practice Research Centre (EPRC), Faculty of Health, Edge Hill University, Ormskirk, United Kingdom
7Regional Head and Neck Unit, University Hospital Aintree Foundation Trust, Liverpool, United Kingdom
Summary
Study conducted at the Head and Neck
Surgery and Otorhinolaryngology
Department, A.C.Camargo Cancer
Center, São Paulo, SP, Brazil
Article received: 11/4/2016
Accepted for publication: 12/1/2016
*Correspondence:
A.C.Camargo Cancer Center
Address: Rua Professor Antonio
Prudente, 211
São Paulo, SP – Brazil
Postal code: 01509-900
Funding: Brazilian Federal Agency
for the Support and Evaluation of
Graduate Education (Capes –
Coordenação de Aperfeiçoamento de
Pessoal de Nível Superior)
Objective: The purpose of this study was to translate, culturally validate and
evaluate the Patients Concerns Inventory – Head and Neck (PCI-H&N) in a
consecutive series of Brazilian patients.
Method: This study included adult patients treated for upper aerodigestive tract
(UADT) cancer. The translation and cultural adaptation of the PCI-H&N followed
internationally accepted guidelines and included a pretest sample of patients
that completed the first Brazilian Portuguese version of the PCI. Use, feasibility
and acceptability of the PCI were tested subsequently in a consecutive series of
UADT cancer patients that completed the final Brazilian Portuguese version of
the PCI and a Brazilian Portuguese version of the University of Washington
Quality of Life Questionnaire (UW-QOL). Associations between physical and
socio-emotional composite scores from the UW-QOL and the PCI were analyzed.
Results: Twenty (20) patients participated in the pretest survey (translation and
cultural adaptation process), and 84 patients were analyzed in the cultural validation
study. Issues most selected were: fear of cancer returning, dry mouth, chewing/
eating, speech/voice/being understood, swallowing, dental health/teeth, anxiety,
fatigue/tiredness, taste, and fear of adverse events. The three specialists most selected
by the patients for further consultationwere speech therapist, dentist and psychologist.
Statistically significant relationships between PCI and UW-QOL were found.
Conclusion: The translation and cultural adaptation of the PCI into Brazilian
Portuguese language was successful, and the results demonstrate its feasibility and
usefulness, making this a valuable tool for use among the Brazilian head and neck
cancer population.
Keywords: surveys and questionnaires, quality of life, head and neck neoplasms,
validity and reliability, outcomes research.
Introduction
Worldwide, approximately 650,000 people per year are
diagnosed with head and neck cancer.1 The city of São
Paulo has one of the highest incidence rates of laryngeal
and oral cancer worldwide.2
Head and neck cancer and its treatment can cause
significant changes in vital functions related to feeding,
communication and breathing of affected patients, as well
as to an individual’s self-image. Such alterations can have
devastating consequences on the patient’s quality of life
and also on their families.3-5 The current focus of head and
neck oncology is to eliminate cancer, prolong survival,
obtain better functional outcomes and preserve or restore
the quality of life (QOL) of affected patients. Studies of
QOL using generic or specific measures usually generate
data and information about the disease and the overall