Abril - 2017

ungerman

318

ssoc

ras

2017; 63(4):311-319

times, the doctor is unwilling to talk about some subjects; I

do not know if it is lack of time or if it is because they don’t

want to trouble the patient... Many doctors want to protect

the patient...” “Everything I feel is written there...!” “This

questionnaire was very important to me; they could create

an explanatory leaflet about everything that can happen to

us because of the treatment...” “From the common concerns

and common cases, group meetings could be established

for patients and families...” “... This questionnaire is like an

anticipated dialogue with the doctor...!” “This was the first

time someone listened to me and asked how I felt. I have

already taken this initiative with respect to the hospital, but

it is the first time someone from the hospital has taken this

initiative in relation to me...” “... In several years of continu-

ous treatment at the hospital, this is the first time I’ve been

formally consulted on topics related to the treatment. I think

that, with this, I could contribute more with my experi-

ences to enhance the hospital services...” “People being con-

cerned about others is very assuring.”

The item selected most often by patients was fear of

their cancer returning (also named fear of recurrence,

FoR), followed by dry mouth, chewing/eating, and the

indication for a speech therapist and dentist. Other stud-

ies that used the PCI-H&N have also found FoR to be the

most common concern that patients with HNC want to

discuss in clinics,

10,21,22

especially in patients aged less than

65 years, who seemed to experience more significant

FoR,

23,24

which is in accordance with the findings of our

study. Using the PCI during clinical routine practice seems

to “allow”/facilitate patients to talk about this heavy

burden with the clinical team, which is usually not ad-

dressed during consultation and may cause detrimental

effects on patients psychological well-being.

For PCI validation, we considered that the most im-

portant step of cultural validation in Brazilian Portuguese

was the rigorous process of translation and back-translation,

as well as the cultural adaptation of some words and ex-

pressions not well-understood or misinterpreted by Brazil-

ian patients. However, we decided to test the construct

validity of the Brazilian version comparing its results with

the UW-QOL scores. The results showed important asso-

ciations between the Brazilian Portuguese version of PCI

and the UW-QOL scores. Patients with lowUW-QOL scores

selected a higher number of issues for discussion in the

PCI, confirming the hypothesized scenario of low QOL

scores being related to the number of issues raised on PCI.

Overall, the results of our study demonstrated good

user feasibility/acceptability of the PCI and significant

correlations of PCI with clinical variables and the UW-QOL,

which is in accordance with the expectations related to

this instrument and demonstrates the usefulness of the

PCI in our population.

The incorporation of the PCI-H&N into clinical practice

has the potential of offering patients the freedom to choose

whether they wish to address some of their concerns at any

point during treatment with members of the clinical team,

supporting the adoption of appropriate strategies and refer-

rals, which may in turn minimize the impact of the disease

and its treatment in different areas of the patient’s life. In

its original format created in the UK, the PCI and UW-QOL

were completed by patients using a touch-screen com-

puter (TST) and the responses were instantly available to

the doctor. In the present study, touch-screen technology

was not available and patients received a printed version

of the translated PCI. The concomitant use of a HRQOL

instrument such as the UW-QOL allows patients with any

disease or treatment-related dysfunction to be identified

and thus promote an opportunity for the clinician to discuss

aspects where patients are performing badly even though

the patient might not have selected related items on the

PCI for discussion. In this context, PCI can be used alone

either on paper or via touch screen or combined with a

HRQOL questionnaire prior to consultation.

onclusion

To sum up, PCI is the only clinical tool of its class cur-

rently available for patients with HNC that is fast, easy to

apply, and can be used alone or in combination with

HRQOL questionnaires. The translation and adaptation

of the PCI into Brazilian Portuguese can be considered

successful, and the results demonstrate its applicability

and sensitivity, making the Brazilian Portuguese version a

valuable tool that can be used in the Brazilian population.

International comparison would give valuable insight into

the cross-cultural patient experience of HNC survivorship.

Further studies using the Brazilian Portuguese version

of the PCI must evaluate the adherence of the clinical

staff to this new tool, the optimization of communication

between patients and physicians, as well as verify if the

previously undiagnosed concerns of the patients were

actually identified and discussed, assessing if there were

any changes in the number of referrals to other members

of the multidisciplinary team, and exploring the changes

in patient concerns over time.

cknowledgments

Ivy Jungerman thanks the Brazilian Federal Agency for

the Support and Evaluation of Graduate Education (Capes

– Coordenação de Aperfeiçoamento de Pessoal de Nível

Superior) for their financial support.