Indicators for evaluating cancer organizations' support services: performance and associations with empowerment

Abstract

Background: Community-based cancer organizations provide services to support patients. An anticipated benefit of these services is patient empowerment. However, this outcome has not been evaluated because of the lack of validated health-related empowerment questionnaires in the cancer context. In this validation study, the authors assessed the extent to which 16 indicators used by the Canadian Cancer Society (CCS) and the Cancer Council Victoria, Australia (CCV) to evaluate their services were associated with health-related empowerment.

Methods: Cancer patients/survivors who were diagnosed < 3 years earlier and who used CCS programs completed a questionnaire that included the 16 CCS-CCV indicators and 5 scales from the Health Education Impact Questionnaire (heiQ) measuring key dimensions of empowerment. To determine whether the CCS-CCV indicators captured empowerment, differences in heiQ scores were compared between 2 groups: those with higher levels of agreement (agreeing or agreeing strongly) with an indicator and those with lower levels of agreement (agreeing slightly or disagreeing to any degree).

Results: Participation was 72% (207 of 289 eligible CCS users). Compared with participants who had lower levels of agreement on CCS-CCV indicators, those who had higher levels of agreement were more likely to report higher levels of empowerment on the different heiQ scales. For 15 of 16 indicators, these differences were significant (Wilcoxon rank-sum test; P < .10) on ≥ 1 of 5 heiQ scales and for 10 of 16 indicators on ≥ 3 of 5 heiQ scales. Two indicators were associated significantly with all 5 heiQ scales (cope better and feel more in control).

Conclusions: Using CCS-CCV indicators to evaluate community-based cancer organizations' services will help determine whether these services are reaching one of their important goals: namely empowering patients.

Keywords: cancer; empowerment; outcome assessment (health care); program evaluation; psychological adaptation; questionnaire; validation studies.