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

Authors

  • Sophie Lauzier PhD,

    1. Faculty of Pharmacy, Université Laval, Québec, Québec, Canada
    2. Research Center, Centre hospitalier universitaire (CHU) de, Québec, Québec, Québec, Canada
    3. Chair on adherence to treatments, Université Laval, Québec, Québec, Canada
    Search for more papers by this author
  • H. Sharon Campbell PhD,

    1. Propel Center for Population Health Impact, University of Waterloo, Waterloo, Ontario, Canada
    2. School of Public Health and Health Systems, Faculty of Applied Health Sciences, University of Waterloo, Waterloo, Ontario, Canada
    Search for more papers by this author
  • Patricia M. Livingston PhD,

    1. Faculty of Health, Deakin University, Melbourne, Victoria, Australia
    Search for more papers by this author
  • Elizabeth Maunsell PhD

    Corresponding author
    1. Research Center, Centre hospitalier universitaire (CHU) de, Québec, Québec, Québec, Canada
    2. Department of Social and Preventive Medicine, Faculty of Medicine, Université Laval, Québec, Québec, Canada
    3. Deschênes-Fabia Breast Disease Center, Centre hospitalier universitaire (CHU) de Québec, Québec, Québec, Canada
    • Corresponding author: Elizabeth Maunsell, PhD, Centre de Recherche du Centre Hospitalier Universitaire (CHU) de Québec, 1050 Chemin Sainte-Foy, Québec, Québec, Canada, G1S 4L8; Fax: (418) 682-7949; elizabeth.maunsell@uresp.ulaval.ca

    Search for more papers by this author

  • See related article on pages 3228–36 and related editorial on pages 3108–10, this issue.

  • We thank the individuals touched by cancer who participated in the different phases of this study. We also thank the research professionals who worked on this study: Elizabeth Simpson (consultant to Propel Center for Population Health Impact, University of Waterloo) and Stephanie Filsinger (Propel Center for Population Health Impact, University of Waterloo); Canadian Cancer Society (CCS) collaborators Dawn Binns (formerly Executive Director, CCS, Prince Edward Island Division), Jan McVinnie (CCS Ontario Division, Cancer Information Service), Janet Canavan, (CCS Ontario Division, CancerConnection), Heather Sinardo (CCS National Cancer Connection program), and all CCS staff who participated in this study; and Donna Turner (Manitoba Cancer Registry, CancerCare Manitoba) and Scott Sellick (Thunder Bay Regional Health Sciences Center).

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. Cancer 2014;120:3219–3227. © 2014 American Cancer Society.

INTRODUCTION

Cancer diagnosis and treatments engender distress and feelings of loss of control over one's life, and patients report high needs for informational, emotional, and practical support.[1-3] Many organizations worldwide— including the US National Cancer Institute's Cancer Information Service (CIS),[4] the Canadian Cancer Society (CCS),[5] the American Cancer Society,[6] state Cancer Councils in Australia,[7] and MacMillan Cancer Support in the United Kingdom[8]—provide support services to address these needs. These services involve the provision of evidence-based, tailored information in print, by telephone, or on the Internet about a wide range of topics, such as diagnosis, treatments and their side effects, dealing with cancer, life after cancer, and community resources. In addition, peer-support programs provide information and emotional support by linking those who have first-hand experience of the disease with patients, survivors, or caregivers seeking support.

One anticipated benefit of these services is patient empowerment. For the cancer context, empowerment in relation to health refers to the individual's feelings of being able to manage the challenges of the cancer experience and of having a sense of control over one's life.[9-11] An empowered individual may better understand and participate in their care, mobilize resources, and take actions that can reduce anxiety, enhance strategies for dealing with cancer, and improve their quality of life. Although theoretical frameworks and evidence from qualitative studies support the idea that cancer organizations' support services increase empowerment, this has rarely been demonstrated in quantitative studies.[12] The lack of validated questionnaires that address health-related empowerment, either generic (those that can be used in any patient population) or cancer-specific (those for use among cancer patients because the questions refer specifically to cancer),[13-18] and of questionnaires suitable for program evaluation[12, 19, 20] hinders this assessment. Some organizations have used brief indicators for program evaluation in surveys of users. By indicator, we mean single, stand-alone questions designed to tap into a specific aspect targeted by these cancer organizations' information and support services and thereby assess their potential benefits for cancer patients and survivors. However, the performance of these indicators and the extent to which they are associated with service users' reports of empowerment have never been formally assessed.

We validated program evaluation indicators currently used by the CCS and in studies conducted at the Australian Cancer Council Victoria (CCV) by assessing whether they captured key dimensions of patient empowerment. We did this by assessing their associations with scales from another questionnaire measuring health-related empowerment that has been validated in the cancer population.[21] This validation study was conducted among users of two CCS programs: the Cancer Information Service (CIS) and the CancerConnection peer-support program. We hypothesized that users who reported higher levels of agreement for a given indicator of program helpfulness would also report higher levels of empowerment as measured by the validated scales.

MATERIALS AND METHODS

CCS-CCV Indicators, Measures of Empowerment

We tested 16 indicators, the 8 used by the CCS and the 8 developed at the CCV. Taken together, these CCS and CCV indicators address complementary aspects of the potential benefits of such support services.

CCS indicators were developed based on findings from a review of peer-support programs.[12] Initially, a list of statements describing the outcomes of such services as reported in the literature was created. Face validity—that is, the extent to which indicators seem relevant and understandable to potential respondents—was established by a panel of CCS informational and psychosocial support staff and peer-support volunteers as well as CIS and CancerConnection users. This process led to the elimination of duplicates, combining similar indicators, and clarifying wording so that each item represented a single potential outcome.

The CCV indicators originated from a study evaluating the potential benefits of an outcall program provided to men with prostate and colorectal cancer by the CCV's Cancer Helpline.[22, 23] A series of statements sought to determine ways in which the outcalls may have helped participants adjust to their diagnosis and treatment and were developed in consultation with a Cancer Helpline nurse. The statements were pilot-tested before implementation and have been used with patients and survivors.[24]

Each indicator directly refers to the service or program, meaning that it can only be administered once a user has experienced it. In this validation study, all the indicators for the CIS users started with, “Talking to someone at the Canadian Cancer Society helped me to…”; and, for CancerConnection users, the indicators started with, “Talking with someone who had a similar cancer experience helped me to…” The response scale had 6 options: 1, strongly disagree; 2, disagree; 3, slightly disagree; 4, slightly agree; 5, agree; and 6, strongly agree.

To assess quantitatively whether these indicators capture key dimensions of generic health-related empowerment, we used 5 of the 8 Health Education Impact Questionnaire (heiQ) scales (version 3.0), a well validated, widely used generic questionnaire that was developed to comprehensively measure the effects of health education programs on self-management among individuals with chronic diseases.[25] The following scales were retained: Social integration and support, Health service navigation, Constructive attitudes and approaches, Skill and technique acquisition, and Emotional distress (for scale definitions and items, see Table 1). We previously reported results strongly supporting the validity of these 5 heiQ scales in the cancer population as generic measures of key dimensions of health-related empowerment.[21] A score for each heiQ scale is produced by summing item responses (1, strongly disagree; 2, disagree; 3, agree; 4, strongly agree) and dividing by the number of scale items. With reverse scoring of negatively worded items from Emotional distress, higher scores indicate greater levels of empowerment. Scale scores can vary from 1 to 4.

Table 1. Definitions of the Health Education Impact Questionnaire Scales (Version 3.0) and Scale Items Used to Determine Whether Canadian Cancer Society and Cancer Council Victoria Indicators Capture Patient Empowerment
heiQ Scale and DefinitionaScale ItemsbCronbach α Value (No. of Completed Items Required to Score)c
  1. Abbreviations: heiQ, Health Education Impact Questionnaire.

  2. a

    License to use the heiQ required from Deakin University; definitions are from Osborne et al 2007[25].

  3. b

    Ellipses ( …) indicate truncated items (complete versions are supplied with the licence).

  4. c

    Cronbach α values are from the validation study conducted in 704 Canadian cancer patients (see Maunsell et al 2014[21]).

  5. d

    For the cancer setting, the term “doctors” was substituted for “doctor” in heiQ version 3.0.

  6. e

    For the cancer setting, the term “health problems” was substituted for “symptoms” in heiQ version 3.0.

Social integration and support: Positive impact of social engagement and support that evolves through interaction with others and the impact that may arise from interaction with others sharing similar health-related life experiences; this “shift” also involves the confidence to seek support within interpersonal relationships as well as community-based organizations on an ongoing basis• I have enough friends who help me cope with my health ….85 (≥3 of 5)
• I get enough chances to talk about my health … 
• If I need help, I have plenty of people I can rely on 
• Overall, I feel well looked after by friends or family 
• When I feel ill, my family and carers really understand … 
Health service navigation: An individual's understanding of and ability to interact with a range of health organizations and health professionals; also measures the confidence and ability to communicate and negotiate with health care providers to get needs met• I communicate very confidently with my doctors about …d.84 (≥3 of 5)
• I have very positive relationships with my health care … 
• I confidently give health care professionals the information … 
• I get my needs met from available health care resources … 
• I work in a team with my doctors and other …d 
Constructive attitudes and approaches: Embodied by the statement, “I am not going to let this disease control my life” and measures a shift in how the individual views the impact of their condition(s) on their life• If others can cope with problems like mine, I can too.87 (≥3 of 5)
• I try not to let my health problems stop me from enjoying life 
• I do not let my health problems control my life 
• My health problems do not ruin my life 
• I feel I have a very good life even when I have health problems 
Skill and technique acquisition: Knowledge-based skills and techniques, including the use of aids that help participants manage disease-related symptoms and health problems more effectively• When I have health problems, I have skills that help me copee.75 (≥3 of 4)
• I have a good understanding of equipment that could make my life easier 
• I have a very good idea of how to manage my health problemse 
• I have effective ways to prevent my health problems …e 
Emotional distress (reverse-scored): Overall negative affective responses to illness, including anxiety, anger, and depression, attributed to the illness• If I think about my health, I get depressed.90 (≥4 of 6)
• I get upset when I think about my health 
• I often feel angry when I think about my health 
• My health problems make me very dissatisfied with my health 
• I often worry about my health 
• I feel hopeless because of my health problems 

Participants and Recruitment

To assess face validity of the indicators from the user perspective, cancer patients and survivors diagnosed in the previous 27 months who had used either the CIS or CancerConnection were recruited by CCS staff. They were asked to self-administer a questionnaire that included the indicators and the heiQ scales and to provide feedback during a subsequent telephone interview on the acceptability and wording of questions and their response scales and any difficulties encountered while completing them.

For the quantitative validation of the CCS-CCV indicators, CCS staff members targeted a new, consecutive series of individuals diagnosed in the previous 27 months with different types of cancer who had used the CIS and CancerConnection between April and July 2009. Patients who were deemed by CCS staff as too distressed or not fluent in English were ineligible. At the end of the call, CIS users were provided with information about the study, and consent to share the client's name and address with the research team was obtained. CancerConnection program coordinators provided information and obtained consent at the 10-day follow-up call scheduled after users had at least one contact with their peer-support person. Consenting users were mailed a package containing an information letter, a questionnaire, and a stamped, addressed return envelope. The questionnaire included questions on sociodemographics, disease and treatment characteristics, the indicators, and the heiQ scales. A second questionnaire was sent if the first had not been returned after 2 weeks. Finally, a reminder letter was sent 4 weeks after the second questionnaire package.

Analyses

For each CCS-CCV indicator, we determined the frequency of missing responses and calculated individual indicator means, standard deviations, medians, and ranges. We also generated an exploratory summary score by summing responses to all 16 indicators and dividing by 16 to provide an overall view of potential program benefits. We conducted an exploratory factor analysis to evaluate the structure of the set of indicators when considered jointly to determine whether, together, they referred to a single dimension (factor) of program helpfulness or whether different groups of indicators measured different dimensions.

To determine whether individual indicators captured empowerment, we compared 2 groups of respondents: those who agreed or strongly agreed with a CCS-CCV indicator versus all other respondents (those who slightly agreed or disagreed to any degree). If heiQ scores were higher in those who agreed or strongly agreed with an indicator compared with those who did not agree, then we considered that the indicator had captured greater levels of empowerment. Associations of each indicator with each heiQ scale were examined in this manner. The score for a given heiQ scale was calculated when >50% of its items were completed. When information was missing for an indicator, the participant was excluded from the analysis for this specific indicator (missing information for indicators ranged from 9 to 16 of 207 participants). Because some indicator scores were not normally distributed, we present between-group differences in both medians and means. We tested differences in distributions using 2-sided Wilcoxon rank-sum tests. P values < .10 were considered significant because of the exploratory nature of this study. Because this test compares mean ranks, which are not directly related to means or medians, in some cases, P values may be significant even when means or medians are not different.

This study received ethical clearance from the Office of Research Ethics at the University of Waterloo and the Ethics Committee of the Hôpital du Saint-Sacrement, Centre hospitalier universitaire (CHU) de Québec. Returning the questionnaire was considered consent to participate.

RESULTS

Face Validity

Eighteen CCS service users participated in the telephone debriefings. The indicators were well understood. All were judged relevant, although not always to their specific experience or to the type of service they received. Participants also mentioned not always being sure whether the indicators were referring to care or services received from their cancer treatment team or from the CCS service. After the debriefings, minor changes were made to 4 CCS items. For example, “feel more comfortable talking to my health care team” was changed to “feel more comfortable talking to health care professionals.”

CCS-CCV Indicators

Among the 289 eligible CIS and CancerConnection users (131 from the CIS and 158 from CancerConnection), 74 and 133 users, respectively returned a completed questionnaire (response rate, 57% and 84%, respectively; overall response rate, and 72%). The reasons for refusal were not systematically recorded but included not being interested or being “surveyed out,” and feeling too ill or overwhelmed. Participants were mainly women (83%), and the mean age was 58 years (Table 2). The majority of patients (75%) reported being diagnosed <12 months earlier. Participants had or had had various types of cancer, with breast cancer reported by 56%. The most common forms of treatment were surgery (69%), chemotherapy (41%), and radiotherapy (25%).

Table 2. Sociodemographic and Medical Characteristics of Participants, n = 207
CharacteristicNo. of Participants (%)
  1. Abbreviations: CancerConnection, a Canadian Cancer Society peer-support program; CCS, Canadian Cancer Society; CIS, Cancer Information Service; SD, standard deviation.

  2. a

    This total does not equal 197 because of missing data.

CCS service from which participant recruited 
CIS74 (35.7)
CancerConnection133 (64.3)
Personal and sociodemographic characteristics 
Sex 
Men33 (15.9)
Women172 (83.1)
Missing2 (1.0)
Age, y 
18-4425 (12.1)
45-5452 (25.1)
55-6461 (29.5)
65-7444 (21.3)
75-9017 (8.2)
Missing8 (3.9)
Mean age ± SD, n = 19958 ± 12
First language learned 
English161 (77.8)
French11 (5.3)
Other29 (14.0)
Missing6 (2.9)
Language most often spoken at home 
English190 (91.8)
French2 (1.0)
Other6 (2.9)
Missing9 (4.3)
Civil status 
Never legally married17 (8.2)
Legally married127 (61.4)
Divorced / separated39 (18.8)
Widowed17 (8.2)
Missing7 (3.4)
Highest level of completed education 
≤High school65 (31.4)
College level or university133 (64.3)
Missing9 (4.3)
Had a paid job at time of questionnaire 
Yes88 (42.5)
No111 (53.6)
Missing8 (3.9)
Had someone to confide in 
Yes197 (95.2)
No7 (3.4)
Missing3 (1.4)
No. of confidants based on n = 171: Median [range]a5 [1-25]
Self-reported medical and treatment characteristics 
Time since first diagnosis, mo 
<12155 (74.9)
12-2317 (8.2)
≥2420 (9.7)
Missing15 (7.2)
Type of cancer 
Breast115 (55.6)
Prostate11 (5.3)
Colorectal11 (5.3)
Lung6 (2.9)
Lymphoma11 (5.3)
Other41 (19.8)
More than 1 type7 (3.4)
Missing5 (2.4)
Treatment received (multiple responses possible) 
None24 (11.6)
Surgery142 (68.6)
Chemotherapy84 (40.6)
Radiotherapy51 (24.6)
Hormone therapy31 (15.0)
Antibody treatment9 (4.3)

Missing responses on at least 1 of the 16 CCS-CCV indicators were noted for 29 participants (14%); and among them, 7 participants (3%) answered no questions (data not shown). Indicators that most frequently were unanswered were “feel comfortable talking with family and friends” and “plan aspects of my life” (Table 3).

Table 3. Scores and Descriptive Statistics for Canadian Cancer Society-Cancer Council Victoria Indicators, n = 207
  Score
IndicatorNo. of ParticipantsaMean ± SDbMedianObserved Range
  1. Abbreviations: SD, standard deviation.

  2. a

    Totals do not equal 207 because of missing data.

  3. b

    The theoretical score range is from 1 to 6. Higher scores indicate greater agreement.

  4. c

    Indicators were adapted from a Canadian Cancer Society survey.

  5. d

    Indicators were adapted from a study evaluating the potential benefits of an outcall program provided by the Cancer Council Victoria to men with prostate and colorectal cancer (see Livingston 2010[23, 24]).

Feel more in control of my lifed1964.4 ± 1.15.01.0-6.0
Cope betterc1974.9 ± 0.95.01.0-6.0
Feel more comfortable talking to health care professionalsc1934.7 ± 1.15.01.0-6.0
Know what to expect from my diseased1924.5 ± 1.15.01.0-6.0
Understand my cancer experience betterc1964.9 ± 1.05.01.0-6.0
Cope with my treatment optionsd1954.7 ± 0.95.01.0-6.0
Decrease my anxietyc1974.9 ± 0.85.02.0-6.0
Reduce my worriesd1984.7 ± 1.05.01.0-6.0
Feel more hopefulc1975.1 ± 0.85.01.0-6.0
Think more positively about my situationd1964.9 ± 0.95.01.0-6.0
Plan aspects of my lifed1914.4 ± 1.15.01.0-6.0
Feel supportedc2005.2 ± 0.85.01.0-6.0
Talk to my doctor about my illnessd1944.6 ± 1.25.01.0-6.0
Feel more comfortable talking with family and friendsc1914.5 ± 1.35.01.0-6.0
Think things throughd1954.8 ± 1.05.01.0-6.0
Feel better informed about my experiencec1985.1 ± 1.05.01.0-6.0
Total score1784.8 ± 0.84.91.5-6.0

Respondents generally reported high agreement with the CCS-CCV indicators. On average, individual indicator scores ranged from 4.42 to 5.18 of 6 (standard deviations ranged from 0.79 to 1.27) (Table 3). The highest scores were observed for the CCS indicator “feel supported” and for the CCV indicator “think more positively about my situation.” The exploratory factor analysis of all 16 indicators considered jointly indicated that these indicators related to a single dimension (factor). The first factor identified explained 87% of the total variance, and all subsequent factors were judged negligible, explaining <10% of the total variance. The total score (± standard deviation) for the 16 indicators considered as a scale was 4.81 ± 0.77 of 6.

Associations Between Indicators and heiQ Scales

With respect to specific indicators, participants with high agreement were significantly more likely to have higher mean scores for the different heiQ scales (Table 4). This was especially the case for 1 CCV indicator, “Talking to someone helped me to feel more in control of my life,” and 1 CCS indicator, “Talking to someone helped me to cope better”: participants in strong agreement with these statements had significantly higher mean scores on all 5 heiQ scales. Thus, as hypothesized, users who reported higher levels of agreement on these 2 indicators of program helpfulness also reported greater levels of empowerment on all 5 heiQ scales. High agreement on an additional 9 CCS-CCV indicators also was associated with higher scores for 4 of 5 heiQ scales. Positive associations with at least 1 of 5 heiQ scales were observed for all indicators. For the total score based on all 16 indicators, high agreement was also associated with higher levels on all 5 heiQ scales.

Table 4. Health Education Impact Questionnaire Mean Differences, Median Differences, and P Values Resulting From a Comparison of 2 Groups From the 207 Patients/Survivors: Those Who Agreed or Strongly Agreed With a Specific Canadian Cancer Society-Cancer Council Victoria Indicator Versus All Other Respondents (Those Who Agreed Slightly or Disagreed to Any Degree)
 Between-Group Difference in Mean/Median (P)a 
IndicatorSocial Integration and Support, n = 202Health Service Navigation, n = 204Constructive Attitudes and Approaches, n = 203Skill and Technique Acquisition, n = 194Emotional Distress, n = 203No. of heiQScales With P < .10
  1. Abbreviations: CCS-CCV, Canadian Cancer Society-Cancer Council Victoria; heiQ, Health Education Impact Questionnaire.

  2. a

    P values were calculated using a 2-sided Wilcoxon rank-sum test.

  3. b

    Indicators were adapted from a Canadian Cancer Society survey.

  4. c

    Indicators were adapted from a study evaluating the potential benefits of an outcall program provided by the Cancer Council Victoria to men with prostate and colorectal cancer (see Livingston 2010[23, 24]).

Service received from the CCS helped me to:
Feel more in control of my life, n = 196c.31/.20 (.0006).24/.20 (.0014).21/.00 (.0026).22/.25 (.0013).25/.17 (.022)5 of 5
Cope better, n = 197b.31/.20 (.013).25/.20 (.0049).24/.00 (.0043).14/.00 (.084).26/.33 (.028)5 of 5
Feel more comfortable talking to health care professionals, n = 193b.24/.20 (.011).25/.20 (.0016).16/.00 (.087).13/.25 (.071).14/.17 (.15)4 of 5
Know what to expect from my disease, n = 192c.33/.20 (.0012).27/.20 (.0010).11/.00 (.076).16/.25 (.016).13/.11 (.33)4 of 5
Understand my cancer experience better, n = 196b.28/.20 (.0051).19/.20 (.021).13/.00 (.051).17/.25 (.0080).19/.13 (.12)4 of 5
Cope with my treatment options, n = 195c.35/.20 (.0002).23/.20 (.0038).15/.10 (.021).14/.00 (.053).19/.17 (.14)4 of 5
Decrease my anxiety, n = 197b.40/.20 (.0007).19/.10 (.036).22/.00 (.0077).11/.00 (.16).37/.33 (.0005)4 of 5
Reduce my worries, n = 198c.24/.20 (.015).08/.00 (.38).10/.00 (.10).16/.25 (.012).20/.17 (.037)4 of 5
Feel more hopeful, n = 197b.32/.20 (.0090).42/.20 (< .0001).19/.00 (.0167).21/.25 (.0093).17/.17 (.1466)4 of 5
Think more positively about my situation, n = 196c.26/.20 (.011).17/.20 (.052).25/.00 (.0045).10/.25 (.11).25/.33 (.019)4 of 5
Plan aspects of my life, n = 191c.33/.20 (.0003).17/.20 (.0331).26/.20 (.0003).14/.00 (.1287).33/.17 (.0041)4 of 5
Feel supported, n = 200b.24/.10 (.067).17/.00 (.13).10/.00 (.26).08/.13 (.33).30/.33 (.090)2 of 5
Talk to my doctor about my illness, n = 194c.20/.20 (.018).20/.20 (.0094).06/.00 (.19).08/.00 (.21).02/.13 (.76)2 of 5
Feel more comfortable talking with family and friends, n = 191b.34/.20 (.0006).27/.20 (.0005).12/.00 (.15).10/.25 (.11).10/.13 (.48)2 of 5
Think things through, n = 195c.23/.20 (.022).13/.20 (.12).12/.00 (.13).13/.25 (.049).10/.13 (.36)2 of 5
Feel better informed about my experience, n = 198b.20/.00 (.15).02/−.13 (.94).13/.00 (.11).07/.25 (.33).28/.33 (.035)1 of 5
Total score for the 16 indicators, n = 178.36/.20 (.0008).26/.20 (.0016).14/.00 (.025).14/.25 (.028).24/.17 (.042)5 of 5
No. of CCS-CCV indicators with P < .1015 of 1612 of 1611 of 169 of 168 of 16

From the perspective of specific heiQ scales, almost all CCS-CCV indicators (15 of 16) were positively associated with Social integration and support, defined as the benefits that come from seeking support and interacting with others. Twelve of the 16 indicators had a significant positive association with a higher sense of confidence in being able to communicate with health care professionals (Health service navigation), and of 11 of 16 indicators had a significant positive association with having a sense of control over the disease experience (Constructive attitudes and approaches). Significant positive associations were observed between at least half of the CCS-CCV indicators and Skill and technique acquisition (9 of 16 indicators), defined as having the knowledge and skills to manage the disease, and with fewer feelings of Emotional distress (8 of 16 indicators).

DISCUSSION

Considered together, our results indicate that the 16 CCS-CCV indicators capture core dimensions of empowerment among cancer patients and survivors. Patients and survivors who reported high agreement with CCS-CCV indicators also reported higher scores on the heiQ empowerment scales. This was particularly the case for 2 indicators—the ability to cope with the cancer diagnosis and a sense of control—which were associated with all 5 heiQ empowerment scales. Moreover, all CCS-CCV indicators but 1 were associated with the scale Social integration and support, which itself captures confidence in seeking support and direct benefits of this support.[25]

Two concepts, the ability to cope with the cancer diagnosis and a sense of control, are central to definitions and measures of empowerment in the health field[9, 11, 13, 14, 25, 26] and are at the heart of community-based cancer support services. This means that an individual who reported that the program helped her/him to cope better or to feel more in control also simultaneously reported higher levels of social integration, higher levels of understanding of and ability to interact with a range of health professionals and organizations, higher levels of constructive attitudes and approaches to dealing with her/his health problems, and higher levels of skill and technique acquisition in relation to dealing with cancer, and they experienced less emotional distress. These outcomes match the theoretical constructs underpinning cancer information and peer-support services as well as results from qualitative studies of support programs.[9-12] To our knowledge, this is the first time that program-specific indicators used by large, community-based cancer organizations to evaluate their information and support services have been validated.

Our study has several strengths. First, instead of developing new indicators, we selected and modified those already developed and used by 2 important national organizations familiar with both the experience and challenges of being a cancer patient or survivor and with the aims of the organization's support services. Consequently, these indicators have high face validity and increased likelihood that they will capture intended benefits directly related to the services provided. Second, this study represents a first contribution to quantitatively validating that these indicators capture core dimensions of patient empowerment in the cancer context. The lack of validated questionnaires for assessing program effects has been recognized.[12, 19, 20, 27] Finally, this evaluation was conducted among patients and survivors who were likely to have characteristics similar to those of the individuals who usually use these services.[28] Indeed, the great majority of users of CCS information and emotional support services are women (80%).[29] We recruited from consecutive series of patients and survivors and obtained a good participation rate overall.

This study also has potential limitations. First, because of its cross-sectional design, we cannot determine whether CCS services resulted in higher levels of empowerment, nor can we rule out the possibility that the patients who reported higher levels of agreement with the CCS-CCV indicators also were more empowered to start with. This could explain why scores on all indicators and on the heiQ scales generally were quite high. Second, our evaluation of these indicators was performed among users of only one community-based cancer organization, the CCS. Still, study participants were selected from across Canada and from 2 CCS programs (CIS and CancerConnection), and these programs are similar to the services provided by other national organizations. Third, a very substantial proportion of participants were women, making it impossible to assess whether sex may influence these results.

Future work will be needed to identify whether the number of indicators can be further reduced while still adequately capturing the empowerment effect of these programs. The wording of some indicators was similar; however, for this first validation, we and our partners at CCS and CCV judged it important to validate all indicators in the form currently used by the 2 cancer organizations that developed them. A shorter series of indicators would probably favor their integration into program evaluation. If such indicators were adopted and used on a wide scale by different cancer organizations offering information and support services, then they could help to monitor the services provided over different time periods and across different settings. We also know that family members and caregivers represent an important proportion of the individuals who use these services. Thus, it would be important to conduct a study similar to this one among family members and caregivers. Both of these avenues would contribute to achieving the goals of these organizations in demonstrating responsibility to their clientele, their donors, and the public.

In summary, our current study demonstrates that the investigated CCS-CCV indicators, which are explicitly linked to a program used by the individual, are promising for measuring the empowering effects of information and support services. First, their content taps into key dimensions of patient empowerment, including feeling control over the illness experience and feeling confident in one's ability to seek support and navigate the health care system. Second, the indicators were developed by program staff, cancer nurses, researchers, and program users from these cancer organizations based on theoretical and experiential evidence. Thus, they are directly tailored to capturing the hoped-for effects of different services and activities offered to help individuals deal with cancer. The results obtained using these indicators will be meaningful to these organizations and to key stakeholders, including patients and their families and those who provide resources (time, funding, and material) to make such services possible.

FUNDING SUPPORT

This work was supported by funding from the Canadian Institutes for Health Research (CIHR) (grant KAL-82607), the National Cancer Institute of Canada (NCIC) (grants 010498 and 010499) through the Propel Center for Population Health Impact, and the CIHR-funded Strategic Training Initiative in Health Research (STIHR) Psychosocial Oncology Research Training program (PORT) (postdoctoral Fellowship Award to Dr. Lauzier). Dr. Lauzier currently holds a Chercheur-boursier award from Fonds de Recherche du Québec-Santé in partnership with the L'Institut National d'Excellence en Santé et en Services Sociaux (INESSS).

CONFLICT OF INTEREST DISCLOSURES

Dr. Lauzier receives salary support from the Chair on Adherence to Treatments, Université Laval, which is funded through unrestricted grants from AstraZeneca Canada, Merck Canada, Pfizer Canada, Sanofi-Aventis Canada, and the Prends soin de toi Program.

Ancillary