Validation of the care notebook for measuring physical, mental and life well-being of patients with cancer

Abstract

To measure patients' QOL in the daily practice of clinical oncology, we developed and tested the Care Notebook. This instrument has 24 questions expressed in single words or short phrases to make it more acceptable to patients. The Care Notebook, EORTC QLQ-C30 and FACIT-Sp-12 were administered to 249 outpatients with cancer. Construct validity was investigated by cluster analysis and multitrait scaling analysis. The results showed that three scales (physical well-being, mental well-being, and life well-being) could explain 55% of the variance in scores. The life well-being scale could be divided into subscales of Daily Functioning, Social Functioning, and Subjective QOL. Multitrait scaling analysis confirmed convergent and discriminant validity of these scales and subscales. Internal consistency and test-retest reliability were favorable. Differences in Care Notebook scores were also consistent with differences in performance status rating (known-groups validity), and Care Notebook scores correlated with EORTC QLQ-C30 and FACT-Sp-12 scores (concurrent validity). The Care Notebook allows clinical oncologists to easily collect valid and reliable QOL information of physical, mental, and life well-being repeatedly and with minimal burden on patients.

Conceptual equivalence and health-related quality of life: an exploratory study in Japanese and Dutch cancer patients

“…Exceptions to this rule were the a coefficients found for the social and cognitive scales. Values of the overall scales were comparable to results from other studies [3,15].…”

“…The growing number of internationally organized clinical trials and comparative studies in cancer patients corroborate the importance of crosscultural validation and standardization of healthrelated quality of life (HR-QOL) measurements [1][2][3]. In order to examine the HR-QOL of cancer patients in a cross-culturally valid way, the European Organization for Research and Treatment of Cancer (EORTC) has developed various QOL questionnaires that have become standard HR-QOL instruments.…”

Quality of Life with Gefitinib in Patients with EGFR-Mutated Non-Small Cell Lung Cancer: Quality of Life Analysis of North East Japan Study Group 002 Trial

“…The NEJ 002 study lacked sufficient support from clinical research coordinators, and doctors had to personally administer QoL questionnaires to patients and pick them up after the answers were completed. Therefore, we chose the Care Notebook, which has good results concerning concurrent validity with the EORTC QLQ-C30 and FACT-Spiritual Well-being [22], for QoL investigation on a weekly basis instead of the above gold standard questionnaires. More than 3,000 Care Notebooks were collected during the initial 20 weeks of treatment in this study, and this method might be the first success of a QoL investigation on a weekly basis for advanced cancer patients in a phase III trial.…”

Verification of the psychometric properties of the Japanese version of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 15 palliative (EORTCQLQ-C15-PAL)

“…However, the only QOL assessment forms for use in palliative cancer care for which validity has been examined for use in Japan are the Japanese versions of the McGill Quality of Life Questionnaire (MQOL) [6] and The Care Notebook [7].…”