Indicators for evaluating cancer organizations’ support services: associations with patient empowerment — ASN Events

Indicators for evaluating cancer organizations’ support services: associations with patient empowerment (#277)

Elizabeth Maunsell 1 , Sophie Lauzier 2 , Sharon Campbell 3 , Patricia M Livingston 4
  1. Faculty of Medicine, Universite Laval, Quebec, QC, Canada
  2. Faculté de Pharmacie, Université Laval, Québec, QC, Canada
  3. Centre des maladies du sein Deschênes-Fabia, Hôpital du Saint-Sacrement, Québec, QC, Canada
  4. Centre intégré du cancer du sein, Centre hospitalier de l'Université de Montréal, Montréal, QC, Canada

Background:  Empowerment in the context of cancer is defined as feeling more control and being better able to manage the illness experience. Numerous cancer organizations have developed information and support services with the aim of empowering patients and/or survivors.
Objectives:  We assessed the extent to which 16 stand-alone indicators developed by the Canadian Cancer Society (CCS) and at the Cancer Council Victoria, Australia (CCV) to evaluate their support services, were associated with key dimensions of empowerment.
Methods:  Canadian cancer patients/survivors diagnosed < 3 years earlier with different types of cancer who used CCS telephone support programs completed a questionnaire including the 16 indicators. Each CCS and CCV indicatorbegan with the stem: “The program helped me to” plus the specific item (example: “feel more in control of my life”). A few indicators were similar but with different wordings (reflecting differences between organizations). Questionnaires also included five scales from the Health Education Impact questionnaire (heiQ: Osborne et al, 2007) conceptualized as measuring key dimensions of empowerment relevant to cancer patients and/or survivors and previously validated among specifically among cancer patients (Maunsell et al, 2011). These scales were: social integration/support, health services navigation, constructive attitudes/approaches, skill/technique acquisition, and emotional wellbeing. To determine whether the 16 indicators captured empowerment, we assessed the mean difference in heiQ scale scores comparing those clearly agreeing (strongly agreed) with each indicator compared to all the other respondents (strongly disagreed, disagreed, slightly disagreed, slightly agreed) using a p<0.10 criterion.
Results:  Two hundred and seven (72%) of 289 eligible CCS users returned a completed questionnaire. The indicators “feel more in control of my life” and “cope better” were significantly associated with all heiQscales. Indicators relating to comfort talking to health professionals, knowing what to expect from the disease and treatment options, reducing anxiety, and thinking positively and planning certain aspects of one’s life, were associated with four of the fiveheiQ scales. Considered relative to scales, social integration/support, health services navigation, constructive attitudes/approaches were significantly associated with 15/16, 12/16 and 11/16 of the stand-alone indicators, respectively, while the other two scales had 9/16 and 8/16 significantly associated indicators, respectively.
Conclusion:  These indicators, suitable for post-program assessments, captured feelings of being empowered and thus have potential value as outcomes for measuring the effects of cancer support programs. The two concepts associated with all five scales – a sense of control and coping – are consistently reported as positive effects from information and peer support services, and are embedded in several definitions and measures of empowerment in the health field. We think it will be possible to further reduce the number of items by selecting those most highly correlated with empowerment among similar items, thus increasing utility of these questions for regular program assessment. 

  1. Osborne RH, Elsworth GR, Whitfield K. The Health Education Impact Questionnaire (heiQ): an outcomes and evaluation measure for patient education and self-management interventions for people with chronic conditions. Patient EducCouns 2007;66(2):192-201
  2. Maunsell E, Lauzier S, Brunet, Campbell S, Osborne RH. Validation of measures of empowerment, an important outcome of support programs in the expanding cancer population. Am J Epidemiol 2011;173(Suppl 11): S21