Patient Concerns Inventory for head and neck cancer: Brazilian cultural adaptation

Jungerman, Ivy; Toyota, Julia; Montoni, Neyller Patriota; Azevedo, Elma Heitmann Mares; Guedes, Renata Ligia Vieira; Damascena, Aline; Lowe, Derek; Vartanian, José Guilherme; Rogers, Simon N.; Kowalski, Luiz Paulo

doi:10.1590/1806-9282.63.04.311

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Revista da Associação Médica Brasileira

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ORIGINAL ARTICLES • Rev. Assoc. Med. Bras. 63 (4) • Apr 2017 • https://doi.org/10.1590/1806-9282.63.04.311 copy

Patient Concerns Inventory for head and neck cancer: Brazilian cultural adaptation

Inventário de Preocupações dos Pacientes com câncer de cabeça e pescoço: adaptação cultural brasileira

Authorship SCIMAGO INSTITUTIONS RANKINGS

Summary

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 consultation were 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

			Number of issues selected				Number of professionals selected
					5+ items				2+ professionals
		n	Median	IQR	%	n	Median	IQR	%	n
Age^* * 0.001, p<0.01, Spearman correlation for the number of specialists selected;	<55	20	9	5-12	80	16	2	0-4	60	12
	55-64	27	7	4-12	67	18	1	0-3	37	10
	≥65	37	9	5-14	78	29	0	0-1	22	8
Gender	Male	62	8	5-13	76	47	0	0-2	31	19
Gender	Female	22	10	4-15	73	16	1.5	1-4	50	11
Site of tumor	Oral cavity	35	8	4-13	71	25	1	0-3	31	11
	Oropharynx	19	9	5-15	79	15	1	0-3	47	9
	Larynx	20	8	5-10	75	15	0	0-2	30	6
	Others	10	10	7-13	80	8	1	0-2	40	4
Time from diagnosis⁺ + 0.001, p<0.01, Spearman correlation for the number of issues selected; (months)	<12	25	13	7-15	84	21	2	0-4	60	15
	12-35	22	9	4-12	73	16	0.5	0-2	36	8
	≥36	37	7	4-11	70	26	0	0-1	19	7
T stage	T1_2	38	7.5	4-12	66	25	1	0-2	37	14
T stage	T3_4	44	8.5	6-14	82	36	0.5	0-3	34	15
N stage	N0_1	59	7	4-12	69	41	0	0-2	27	16
N stage	N2_3	24	11	8-15	88	21	2	0-3	54	13
Reconstruction	No	38	8.5	4-12	68	26	1	0-2	34	13
Reconstruction	Yes	46	8	5-14	80	37	1	0-3	37	17
RT	No	16	8.5	4-16	63	10	1	0-2	38	6
RT	Yes	68	8	5-13	78	53	1	0-2	35	24
Treatment	Surgery, no RT	21	10	4-17	67	14	1	0-3	48	10
	Surgery & RT	34	7	5-11	76	26	0	0-1	21	7
	Primary RT	29	9	6-13	79	23	1	0-3	45	13
Physical function (UW-QOL) ⁺⁺ ++ p<0.001, Spearman correlation for the number of issues selected; ^ p<0.001, Spearman correlation for the number of specialists selected; none of the other patient characteristics were associated at p<0.01 with the number of issues or specialists selected according to the Mann-Whitney test (gender, clinical T, N, reconstruction, RT, surgery) or Kruskal-Wallis test (site, treatment); RT: radiotherapy; IQR: interquartile range; PCI: Patient Concerns Inventory; UW-QOL: University of Washington Quality of Life Questionnaire.	<50	9	9	8-16	100	9	3	2-4	89	8
	50-74	19	12	9-16	84	16	1	0-5	47	9
	75-89	26	9	4-13	73	19	1	0-2	38	10
	90+	30	6	3-9	63	19	0	0-1	10	3
Social-emotional (UW-QOL)⁺⁺ ++ p<0.001, Spearman correlation for the number of issues selected; ^* * 0.001, p<0.01, Spearman correlation for the number of specialists selected;	<50	20	12	8-15	90	18	1.5	0-4	50	10
	50-74	27	9	6-14	85	23	1	0-3	48	13
	75-89	20	6	4-10	70	14	0	0-1	20	4
	90+	17	4	2-8	47	8	0	0-1	18	3

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[1] *Correspondence: A.C.Camargo Cancer Center, Address: Rua Professor Antonio Prudente, 211, São Paulo, SP - Brazil, Postal code: 01509-900. jgvartanian@uol.com.br