The Institute of Medicine (IOM) recommended six objectives for achieving patient-centered care which stated that care must be: 1) respectful to patients’ values, preferences, and expressed needs; 2) coordinated and integrated; 3) provide information, communication, and education; 4) ensure physical comfort; 5) provide emotional support; and 6) involve family and friends. However, most patient-reported outcome measures developed with cancer populations fail to address all six dimensions of patient-centered care.
To develop the Quality of Patient-Centered Cancer Care (QPCCC) measure based on the IOM recommendations and to examine the measure’s validity, reliability, floor and ceiling effects.
Haematological cancer survivors aged 18-80 years were recruited from two Australian state cancer registries and were mailed the QPCCC measure. To examine test-retest reliability a second QPCCC measure was mailed to survivors who returned a completed QPCCC measure and agreed to future research 7 days after the return of their initial completed QPCCC measure.
QPCCC items were developed based on an extensive literature review, input provided from behavioural scientists, haematologists and a cancer specialist and in-depth individual interviews undertaken with seventeen haematological cancer survivors. Overall 545 haematological cancer survivors completed the QPCCC measure. Exploratory factor analysis revealed a 10-factor structure with factor loadings >0.40. The QPCCC measure demonstrated acceptable internal consistency for all subscales. When assessing test-retest reliability, Cohen’s kappa revealed most items showed moderate agreement. The area of cancer care most frequently nominated as needing improvement was hospital staff not helping family and friends to find other people with similar experiences to talk to (34%).
The QPCCC measure showed evidence of face and content validity, construct validity and internal consistency. However, the measure’s test-retest reliability could be improved. Psychometrically robust patient-reported outcome measures that assess the quality of patient-centered cancer care are essential to quality improvement efforts.