Development and validation of a palliative care needs assessment instrument-English/Arabic versions (PCNA-EAV), for use with patients with advanced cancer

Abstract

The aim of this study is to develop and translate a psychometrically valid and reliable, population-based, needs assessment instrument, the PCNA-EAV, to measure the health care and support care needs of patients with advanced cancer.

The cross-sectional study design combined qualitative and quantitative methods, to test instrument reliability and validity, and to examine the association between sample characteristics and health care and support needs. The 116-item, PCNA-EAV, comprised 10 domains of need: physical/functional; social; psychological/emotional; information; communication; helpful resources; financial; religious/spiritual; priority of need; and preference for care.

The target population was all cancer patients in the department of oncology at King Abdulaziz Medical City-Riyadh (KAMC-R), Saudi Arabia. The survey was conducted in three stages: pretest, pilot and retest, using a purposive sampling technique to recruit pretest and pilot subjects. Retest subjects were all participants in the pilot phase, who consented to be re-interviewed.

Results for estimates of reliability and validity were mixed. Eight of the 16 PCNA-EAV scale and subscale estimates of reliability (Cronbach's alpha) were acceptable to excellent, ranging from α=0.70 to α=0.91. Test-retest reliability showed 11 of the 16 scales reliable over time (p⇒.05), ranging from r(9)=.44, p=.17, to r(9)=.12, p=.72. Face and content validity were demonstrated, through expert panel review. P-values for the test for convergent validity are not significant (p.05); however, the trend indicates a positive association between variables, overall.

This study extends existing work on cross-cultural instrument translation, adaptation, and validation. Further research is required, using multiple sites, and a larger sample size, to psychometrically validate the instrument, which has the potential to be a useful measure for use in Arabic-speaking, Islamic cultures.

Key words: needs assessment, palliative care, instrument, validation, reliability, cancer