Development of a Simple Patient-reported Outcome Measurement for Terminally Ill Cancer Patients Receiving Home-based Palliative Care

Abstract

Objective: To develop a patient-reported outcome measurement for terminally ill cancer patients (PROMs-TCP) receiving home-based palliative care, which is valid, reliable and easy to use by patients or caregivers to indicate urgent needs for assistance from the care team.

Materials and methods: Three-step approach consisting of literature review, focus groups and questionnaire testing. 169 terminally ill cancer patients who received palliative care at Cancer hospital, tertiary-care hospital and university school of medicine in Thailand. The PROMs-TCP comprised five key questions with a total score of 10 and one supplemental question. PROMs-TCP was tested for content validity, internal consistency and inter-rater reliability, criterion validity, discriminant validity and sensitivity to change. The palliative care outcome scale (POS) was used as an indicator.

Results: PROMs-TCP consists of five questions. The item-level content validity index (CVI) ranged from 0.8 to 1, and the scale-level CVI was 0.97. PROMs-TCP correlated well with POS scores, with correlations ranging from -0.7 to -0.8. Internal consistency was good (Cronbach's α = 0.85), while inter-rater agreements between patients and caregivers and between patients and nurses were moderate to good (Cohen's weighted k = 0.69-0.87). The tool could reasonably discriminate terrible days from good days for the patients. It was also responsive to change scores, with effect size scores of 0.36.

Conclusion: PROMs-TCP could be used for daily health status assessment of home-based patients with terminally ill cancer, supporting the provision of palliative care in primary care settings.

Keywords: Home-based palliative care; Outcome assessment; Primary care; Thailand.

Figure 1:

Different cut-off points for the PROMs-TCP (n = 1,709). CI: Confidence interval, ROC: Receiver operating characteristic, AUC: Areas under the curve, PPV: Positive predictive value, NPV: Negative predictive value. PROMs-TCP: Patient-reported outcome measurement for terminally ill cancer patients. The bold values in the cut points show how sensitive and specificity of the data.

Figure 2:

The change score between PROMs-TCP and palliative care outcome scale assessment (n = 132). PROMs-TCP: Patient-reported outcome measurement for terminally ill cancer patients.