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

Author:

Preechachaiyawit Porntip1,Sriratanaban Jiruth1,Manasvanich Bhorn-Ake2

Affiliation:

1. Department of Preventive and Social Medicine, Faculty of Medicine, Chulalongkorn University, Pathum Wan, Thailand

2. Cheewabhibaln Palliative Care Center, King Chulalongkorn Memorial Hospital, The Thai Red Cross Society, Pathum Wan, Thailand

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.

Publisher

Scientific Scholar

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