Abril - 2017

ungerman

312

ssoc

ras

2017; 63(4):311-319

impact of its treatment on the patient, including data that

could be used to improve treatment support, optimize

patient care, define rehabilitation necessity and goals, iden-

tify problems and preferences of patients, and also facilitate

communication between patients and doctors.

6-9

In conjunction with the Merseyside Regional Head

& Neck Cancer Centre Support Group, Rogers et al.

10,11

and Ghazali et al.

developed the Patient Concerns

Inventory – Head and Neck (PCI-H&N), which has been

included in the British H&N National Annual audit

(DAHNO) as an indicator of quality of care. It consists

of an inventory based on the collection of items from

various health-related quality of life (HRQOL) question-

naires. The PCI is a carefully designed H&N cancer-

-specific checklist intended to be used in consultations

as part of routine outpatient care. It is holistic, self-

-administered and designed to achieve a more patient-

-focused and patient-directed medical consultation,

leading to more shared decision-making and poten-

tially better patient support and outcomes. Patients

select items from the checklist that they want to discuss

during the consultation and also select health profes-

sionals that they would like to see during their outpatient

visit or be referred to.

The purposes of the present study were to adapt and

culturally validate the PCI-H&N into Brazilian Portuguese

language and to evaluate its use in a series of patients

treated for head and neck cancer (HNC) in a referral can-

cer center in Brazil.

ethod

The instrument description

The first part of the original English version of the PCI

has 57 items grouped into five domains: physical and

functional well-being (29 items), treatment-related (four

items), social assistance and welfare (nine items), psycho-

logical, emotional and spiritual well-being (14 items), and

other (free text). The second part consists of a list of 17

specialists, also grouped into five domains: physical and

functional well-being (eight specialists), treatment-related

(three specialists), social assistance and welfare (three spe-

cialists), psychological, emotional and spiritual well-being

(three specialists), and others (free text). In both parts of

the inventory, patients can select as many items and spe-

cialists as they would like.

It is important to highlight that the PCI is a checklist

of issues that patients wish to talk about in their clinical

consultation and is not a measure of the level of concern

per se. Patients can have concerns and still not want to

discuss them. It has no rating or score.

Translation and adaptation process

The translation and cultural adaptation of the PCI followed

internationally accepted guidelines.

13,14

Initially, two bi-

cultural experts and translators, who were experts in the

area of healthcare, translated the original English version

of the PCI into Brazilian Portuguese. A third bicultural

expert compared the two versions, and a consensus version

was reached. The consensus-translated version of the Bra-

zilian Portuguese PCI was then back-translated into Eng-

lish by two additional bicultural experts and translators

who were native English speakers in collaboration with

one of the authors (SNR). To confirm the cross-cultural

equivalence of the original and translated versions for

semantic, idiomatic, experiential and conceptual aspects,

a committee formed by three healthcare professionals with

experience in HNC revised the final version, comparing it

to the original one. Any discrepancies between the original

and back-translated versions were resolved by repeating

the process as needed.

A pretest survey was performed.

Pretest survey

The inclusion criteria for the pretest survey were: patients

18 years of age or older who were treated for upper aerodi-

gestive tract (UADT) cancers regardless of the histological

type or tumor staging. Exclusion criteria: Patients with a

diagnosis of thyroid cancer or neurological changes, and/

or deficits in comprehension and/or ability to communi-

cate, as well as individuals who reported being physically

and/or psychologically unable to answer the questionnaire.

A series of 20 eligible patients completed the Brazilian

Portuguese PCI version for the pretest survey. Informed

consent was obtained from all patients enrolled in this

pretest survey.

During this pretest survey, patients were asked about

possible difficulties in interpreting any words or expres-

sions translated in the Brazilian version of the PCI, as

well as limitations to complete the questionnaire. If any

specific difficulty to complete the inventory was reported

by more than one patient, a meeting among the research

teammembers (Brazilian authors) was performed to adapt

and modify such item as needed.

Cultural validation study

A consecutive series of UADT cancer patients meeting the

same inclusion and exclusion criteria of the pretest survey

completed the final version of the PCI and also the Brazil-

ian Portuguese validated form of the University of Wash-

ington Quality of Life Questionnaire (UW-QOLv4).

15,16

Informed consent was obtained from all enrolled patients.