Learning Objectives: After participating in this continuing professional development activity, the provider should be better able to:
1. Describe the significance of cancer pain management on quality of life among Asian Americans with breast cancer.
2. Analyze the development of a culturally tailored cancer pain management intervention for Asian Americans with breast cancer.
3. Evaluate the findings from the pilot study of a technology-based CAncer Pain management support program for Asian American survivors of breast cancer (CAPAA).
With few existing technology-based programs to support cancer pain management, the need for culturally tailored programs to support ethnic minority cancer survivors has been highlighted. The purpose of this study was to explore the preliminary efficacy of the technology-based CAncer Pain management support Program for Asian American survivors of breast cancer (CAPAA), a technology-based cancer pain management program, in improving the cancer pain experience of Asian American breast cancer survivors. This pilot study adopted a randomized repeated-measures pretest/posttest control group design with a sample of 94 Asian American breast cancer survivors. Study measures included the Brief Pain Inventory-Short Form, Support Care Needs Survey-34 Short Form, and Mishel Uncertainty in Illness Scale-Community. Data were analyzed using descriptive and inferential statistics including repeated-measures analysis of covariance (ANCOVA). Although there were no significant differences in pain, there were significant changes in perceived isolation (F = 9.937, P < 0.01), personal resources (F = 6.612, P < 0.05), support care need (F = 8.299, P < 0.01), and degree of uncertainty (F = 8.722, P < 0.01) in the intervention group from pretest to posttest. These findings support the positive effects of CAPAA on the cancer pain experience of Asian American breast cancer survivors.
Breast cancer is the leading cancer by site among Asian American women,1,2 and its incidence rates vary by subethnic group.2 Breast cancer is the leading cause of death for some subethnic groups.3,4 Furthermore, compared with Whites, higher relative risks, lower 5-year survival rates, and lower quality of life are reported in Asian Americans.5 Inadequate cancer pain management is a major reason for their lower quality of life.6,7
Pain is a common problem in cancer survivors, especially in the first few years after treatment and during the diagnosis and treatment process.8,9 The prevalence of pain is high in breast cancer survivors, including body pain, joint pain, and operation site pain.10 Furthermore, Asians are stoic in relation to cancer pain and suffer unnecessarily from pain that could be easily managed using currently existing regimens.6 The literature is also clear about the unique breast cancer experience and definite need for support for cancer pain management among Asian American breast cancer survivors.6,11
The effectiveness of technology-based interventions has been reported in providing support to improve various symptoms including cancer pain and change health behaviors.12,13 Technology-based programs have been reported to show great potential to improve survival rates, narrow ethnic gaps in survival rates, and reduce barriers to care by providing information and support in ethnic minorities including Asian American breast cancer survivors.6 Moreover, Asian Americans are one of the largest groups who use the Internet on a daily basis.14 About 70% of Asian Americans are online daily, and this ethnic group uses the web to seek information more frequently than do white, Hispanic, or African American Internet users.14 Considering these facts, technology-based interventions have the potential to benefit this population, who are frequently online seeking information. Furthermore, socially marginalized populations such as Asian American breast cancer survivors are reportedly more interested in e-health compared with those not marginalized.15 Marginalized populations value Internet resources because they may be less likely to have equal and trustworthy relationships with their doctors in face-to-face settings.16
With few existing programs to support cancer pain management in general, the need to develop culturally tailored technology-based programs for cancer pain management has been recently highlighted.17 In contrast to generic programs, culturally tailored programs can address factors that are specifically important to cultural groups and subsequently serve them more effectively than generic programs.17 Therefore, here we developed the first technology-based cancer pain management support program culturally tailored to Asian American breast cancer survivors based on actual data on Asian Americans' cancer pain experience.
The purpose of this study was to explore the preliminary efficacy of the technology-based CAPAA in improving the cancer pain experience of Asian American breast cancer survivors. In this pilot study, only 3 subethnic groups within Asian Americans (Chinese, Koreans, and Japanese) were chosen for convenience. Within multiple Asian American subethnic groups, Chinese are the major group, Koreans are the most rapidly growing group, and Japanese are the group with the greatest risk of breast cancer.18,19 The hypotheses addressed in this pilot study were as follows:
* Hypothesis 1. After controlling for background and disease factors, Asian American breast cancer survivors who use the CAPAA (intervention group) will show significantly greater improvements than those who do not use the program (control group) in their pain from pretest to posttest.
* Hypothesis 2. After controlling for background and disease factors, Asian American breast cancer survivors who use the CAPAA (intervention group) will show significantly greater improvements than those who do not use the program (control group) in their pain management experience (support care needs, uncertainty, personal resources, perceived isolation, and perceived self-efficacy) from pretest to posttest.
Theoretical Basis and Development of the Study Program
The study was theoretically driven by Bandura's20 theory of behavioral change (self-efficacy theory). The CAPAA included 3 components: (1) interactive online discussion board; (2) online educational sessions; and (3) online resources. These components provided a medium for the users: (1) to share their own cancer pain experience and get support/coaching from culturally matched peers and health care providers (enhance attitudes and self-efficacy); (2) to obtain reliable and valid information from scientific authorities (enhance attitudes and reduce barriers); and (3) to gain access to resources to resolve their pain management-related issues/concerns (enhance attitudes and self-efficacy and reduce barriers). Based on Bandura's theory, the use of these components was expected to result in decreased information needs and uncertainty and increased perceived social support and self-efficacy (hypothesis 2). Subsequently, the use of these components was also expected to decrease cancer pain (hypothesis 1). In addressing these hypotheses, we considered background and disease factors as covariates that could influence the outcome variables.21-28
The Cancer Pain Support Program Structure
The CAPAA used a free-form matrix information architecture29 and had menus according to its 3 components. Graphic user interface controls30 (eg, push buttons, check boxes, and drop-down lists) were used, and presentation styles (eg, colors, designs, and menus) reflected the preferences of Asian Americans based on the feedback from Asian American participants of previous studies conducted by the research team. To develop a culturally sensitive intervention, the research team members included 2 Korean and 2 Chinese research staff members who were born and lived in Korea and China for more than 20 years, respectively. These research staff members provided feedback on cultural adequacy throughout the developmental process, especially on nuances of the text in education materials and questionnaires, and colors and images used in the program. In addition, when the research team received questions from the participants, research team members with the same cultural background answered the questions in their language. As the research team did not have Japanese research staff, a Japanese nursing faculty member living in Japan reviewed the program.
As mentioned earlier, the CAPAA had 3 components in 4 different languages (English, Mandarin Chinese, Korean, and Japanese): interactive online discussion board; online educational sessions; and online resources. Through the interactive online discussion board, the participants posted their own breast cancer and cancer pain experiences and received individual and group support and coaching from culturally matched participants and health care providers as replies to the post. The board included a discussion board, multimedia upload functions (similar to social media applications such as Facebook), and pain and symptom log functions, with daily moderating and coaching and monitoring by culturally matched registered nurses (RNs) under the supervision of and consultation with culturally matched medical doctors. Practical guidelines for the RNs were developed based on a previous study,6 and the RNs in this study were trained according to these guidelines. The practical guidelines included culturally appropriate examples from the previous study and the literature that could be used in the coaching and support process.
The second component, online educational sessions, provided information about topics related to breast cancer survivorship and cancer pain management [reports and short videos from scientific authorities including the National Institutes of Health, American Cancer Society (ACS), American Congress of Obstetricians and Gynecologists, American Diabetic Association, Office of Minority Health, Susan G. Komen Foundation, Mayo Clinic, Asian American Physicians Association, and Asian American Pacific Islander Nurses Association (in multiple languages) that had already been tested and validated in previous studies].
We chose the topics of educational sessions considering participants' cultural attitudes identified in previous studies.5,6,31 The CAPAA aimed to combat misinformation on breast cancer and cancer pain management using state-of-the-science evidence-based educational content and provide examples of pain management strategies that could be easily used in cancer pain management. The content included general and ethnic-specific information on: (1) breast cancer and cancer pain management; (2) breast cancer interactive tutorial by the National Library of Medicine related to cancer pain management; (3) after-treatment topics related to breast cancer including cancer pain management; (4) survivorship and recurrence; (5) facts for life after treatment; (6) breast cancer and osteoporosis; and (7) alternative medicine (specifically for pain management) with detailed information on red ginseng, herbal medicine, acupuncture, and yoga. Culturally sensitive and relevant content (eg, red ginseng, herbal medicine, acupuncture, and yoga) and educational materials and resources from Asian scientific authorities (eg, Chinese Anti-Cancer Society, Korean Breast Cancer Society, and Korean Pain Research Society) also were incorporated. These educational sessions provided updated and existing state-of-the-science educational content on breast cancer, diagnosis, treatment, and cancer pain management strategies. Thus, we expected these resources to be helpful in changing the women's cultural attitudes toward breast cancer and cancer pain management, helping them to avoid pain and symptoms that could be easily managed/treated, and providing them with adequate information necessary for breast cancer survivorship.
Finally, the third component was online resources, which provided 20 language- and culture-specific Internet links to resources related to breast cancer survivorship and cancer pain management especially for Asian Americans. Although the second component involved educational sessions for which the research team synthesized relevant information into PowerPoint slides (Microsoft, Redmond, Washington) by topic, this third component provided helpful links to the participants for their free use. The CAPAA was reviewed by 5 experts against criteria for rigor in cross-cultural research32 and was subsequently refined according to their feedback.
Methods
This was a randomized controlled intervention pilot study conducted from June 2014 to May 2016. The study was approved by the institutional review board of the institute where the researchers were affiliated. The study adopted a repeated-measures pretest/posttest control group design. There were 2 groups of participants: (1) 30 Asian American breast cancer survivors who did not use the CAPAA, but used the ACS multilingual website on breast cancer and cancer pain management (control group); and (2) 64 Asian American breast cancer survivors who used the CAPAA and the ACS multilingual website on breast cancer and cancer pain management (intervention group). The link to the ACS site was provided through the project website, and both control and intervention groups were asked to use the link at their convenience.
Samples and Settings
Participants were recruited from Internet cancer support groups and Internet communities for Asian Americans. We sent the study recruitment invitations to 201 Internet communities and groups. Among them, 44 general online groups for breast cancer (eg, Breast Cancer Awareness, Asian Breast Cancer Project) agreed to post our study announcement. For the rest of the 157 groups targeting each of the subethnic groups (eg, Breast Cancer Discussion for Chinese, Korean Breast Cancer Support Group, and Breast Cancer Support Group in Japanese), only 14 responded and agreed to post the announcement to their members, including 12 Chinese, 2 Korean, and no Japanese groups. The study was announced through their sites, e-mail discussion lists, and instant messaging. This might be the reason that a higher number of Chinese participants were recruited compared with other subethnic groups.
To address hypotheses 1 and 2, 105 participants per group would be adequate to detect a 0.5 difference between group means in the follow-up period with 80% power and a type I error rate of 0.00625 while considering 6 outcome measures in 2 hypotheses. However, considering the pilot nature of the study, we included only 94 women, as 25 participants per group are recommended for a pilot study with a small (0.2) standardized effect size.33 The participants were women 21 years and older; diagnosed with breast cancer within the last 5 years; literate in English, Mandarin Chinese, Korean, or Japanese; with Internet access; self-identified as Chinese, Korean, or Japanese; and with a cancer pain rating of 2 during the past week. Cancer pain was rated from 0 to 5 (no symptom = 0, worst possible symptom = 5). The rationale for including only those participants reporting at least 2 on the pain scale was that pain had to be somewhat bothersome to seek information and support for pain management.
Instruments
Background factors (eg, age, sex, educational status, religion, and family income) and disease factors (eg, general health condition, diagnosis of breast cancer, time since diagnosis, and stage of cancer) were used as covariates when testing the study hypotheses. The outcome variables were the degree of cancer pain (primary) in hypothesis 1, and support care needs, uncertainty, personal resources, perceived isolation, and perceived self-efficacy (secondary) in hypothesis 2. The instruments to measure the outcome variables included the Brief Pain Inventory-Short Form (15 items to measure pain),34 the Support Care Needs Survey-34 Short Form (34 items to measure support care needs),35 the Mishel Uncertainty in Illness Scale-Community (5 items to measure uncertainty),36 the Personal Resource Questionnaire (25 items to measure personal resources),37 the Perceived Isolation Scale (9 items to measure perceived isolation),38 and the self-efficacy items of the Cancer Behavior Inventory (6 items to measure perceived self-efficacy).39 The Cronbach [alpha] of the instruments ranged between 0.76 and 0.96 among Asian Americans. All the instruments had been previously used with Asian populations showing adequate reliability and validity. The background and disease factors were asked once during pretest survey. All the outcome variables were asked both during pretest and post-1-month survey.
Data Collection Procedure
In their first visit to the project website, the participants were required to review the consent information and click "I agree to participate" if they decided to participate in the study. Subsequently, they were checked against the eligibility criteria, and only those who met the criteria were automatically randomly assigned to the intervention or control group using a computerized function of the project website. Participants were then required to complete the pretest survey, and IDs and passwords were provided to them. Each participant joined the study for 1 month. Both groups were also provided an electronic sheet with instructions on when to complete the posttest survey and/or use the CAPAA. Additionally, both groups were required to use the ACS website. The intervention group used the CAPAA and ACS website for 1 month and then completed the post-1-month survey. The control group used the ACS website for 1 month and then completed the post-1-month survey.
The pretest survey included questions on background and disease factors. The average time to complete each survey was about 30 minutes; participants could stop at any time and continue later at their convenience. The participants who did not complete the post-1-month survey received reminder emails up to 3 times.
Data Analysis
The answers to the questionnaires were automatically coded and managed using the REDCap system (Vanderbilt University, Nashville, Tennessee).40 Data were analyzed using IBM SPSS Statistics for Windows, version 22.0 (IBM Corp, Armonk, New York). Descriptive analyses were conducted to determine the frequencies, percentages, means, and SDs of major variables. We used the t test and [chi]2 test to compare intervention and control groups' background characteristics. A repeated-measures ANCOVA was conducted to determine the preliminary efficacy of the CAPAA in improving the cancer pain and secondary outcomes of Asian American breast cancer survivors. A repeated-measures ANCOVA was also used to determine the violation of independence of multiple observations that can be often found in longitudinal studies.41 The preliminary analysis did not indicate any violations of the assumptions of the analyses (normal distributions and homogeneity of variances).
Results
Participants' Flow
A total of 94 Asian American breast cancer survivors were initially recruited and retained in the study. The participants were assigned to the intervention or control group using the project website's randomization program. However, many of the participants in the control group requested to change their group assignment to the intervention group or be dropped from the study, as they wanted support and coaching. This resulted in the study having more participants in the intervention group (n = 64) than in the control group (n = 30). Moreover, most of the participants in the intervention group were Chinese (n = 63). Although each group exceeded the recommended 25 participants for a pilot study, the uneven participant numbers in groups, along with many Chinese participants, are the limitations of this study. The limitations are further explained in the Discussion section. There were no dropouts during the 1-month study.
Demographic Characteristics
Participants' demographic information is provided in Table 1. The mean age of the participants was 41.4 (SD = 9.1) years. Participants included 76 Chinese (83.6%), 6 Koreans (6.5%), 3 Japanese (3.3%), and 6 "other" (6.5%; those who used English and declined to indicate their subethnicity although they were Chinese, Korean, or Japanese). About 63% were born in the United States, and the mean time spent in the United States was 15.7 (SD = 8.7) years. More than 50% were college graduates, and more than 25% had a graduate degree. Approximately 92% were married, and approximately 26% were employed. Approximately 76% had a religion, and 31% thought their family income was sufficient to cover their basic needs. Approximately 95% had access to health care, and 23% perceived they were healthy. The mean time since the diagnosis of breast cancer was 2.1 (SD = 1.2) years. Approximately 73% had breast cancer stage 1, and about 20% had stage 2. Approximately 80% of the participants were taking medications not necessarily related to breast cancer treatments.
Although the participants were randomly assigned to the intervention or control group, several background characteristics were different including age (t = -5.367, P < 0.001); subethnicity ([chi]2 = 37.165, P < 0.001); born in the United States ([chi]2 = 30.052, P < 0.001); marital status ([chi]2 = 11.205, P < 0.01); employment status ([chi]2 = 6.456, P < 0.05); degree of income sufficiency ([chi]2 = 30.128, P < 0.001); use of facility ([chi]2 = 6.135, P < 0.05); degree of perceived health ([chi]2 = 27.982, P < 0.001); years after breast cancer diagnosis (t = 5.737, P < 0.001); and taking any type of medication ([chi]2 = 31.450, P < 0.001).
Changes in Pain and Secondary Outcomes
Differences in pain and outcome variables between pretest and posttest for each group are summarized in Table 2. Although there were no significant differences in pain (hypothesis 1 not supported), there were significant changes in perceived isolation (F = 9.937, P < 0.01), personal resources (F = 6.612, P < 0.05), support care need (F = 8.299, P < 0.01), and degree of uncertainty (F = 8.722, P < 0.01) in the intervention group from pretest to posttest (hypothesis 2 partially supported).
The changes in the outcome variables between pretest and posttest were compared by group (Table 3). Perceived isolation improved more in the intervention group (mean = -0.43, SD = 0.79) than in the control group (mean = 0.11, SD = 0.20; F = 5.471, P < 0.05). Personal resources increased in the intervention group (mean = 0.53, SD = 0.59), whereas they decreased in the control group (mean = -0.11, SD = 0.68; F = 10.027, P < 0.01). The degree of uncertainty decreased in the intervention group (mean = -0.49, SD = 0.87), whereas it increased in the control group (mean = 0.05, SD = 0.37; F = 4.455, P < 0.05).
Discussion
Although several studies have reported positive findings on technology-based interventions among cancer patients, the results regarding the effectiveness of such interventions on health outcomes have been inconsistent. Some research reported no significant changes in patient outcomes such as cancer pain, perceived stress, depression, anxiety, sense of well-being, and adjustment to cancer management,42-44 whereas other studies demonstrated significant improvements in health outcomes such as quality of life, pain, symptoms, functional status, self-efficacy, and self-esteem.45-47 A reduction in uncertainty, social isolation, and information and communication needs has also been reported.45-47
The findings of the present study agree with the latter group of previous studies, which supported the effectiveness of technology-based interventions on cancer patients' outcomes.45-47 Only the intervention group (who used the CAPAA) showed significant improvements in patient outcomes (perceived isolation, personal resources, support cancer needs, and uncertainty), when background and disease factors were controlled. Thus, the CAPAA was effective in significantly reducing perceived isolation, support care needs, and uncertainty while significantly increasing personal resources. Basically, these findings support the preliminary efficacy of a culturally tailored technology-based cancer pain management intervention for Asian American breast cancer survivors in reducing their perceived isolation and uncertainty and increasing personal resources.
Based on previous literature findings,45-47 only the intervention group was expected to show negative changes in pain and support care needs and positive changes in self-efficacy, whereas the control group was not expected to show any changes in the outcomes. However, in this study, neither group showed significant changes in pain, support care needs, or self-efficacy, although slight improvements were seen in the intervention group. The intervention group showed a higher reduction in support care needs and higher increase in self-efficacy compared with the control group. Moreover, the intervention group had negative changes in pain, whereas the control group had positive changes in pain, although neither change was statistically significant. A plausible reason for these nonsignificant findings (despite prominent changes) might be the short length of the intervention (1 month); this period might not be long enough for the use of the CAPAA to have an effect on the support care needs, self-efficacy, and pain of Asian American breast cancer survivors.
There are several limitations to this study. First of all, the generalizability of the findings is limited because of the small sample size, as this was a pilot study, and only included participants who had access to Internet through computers or smartphones. Particularly, many of the participants were Chinese and relatively young. This can be because Chinese are the largest group of Asian Americans,48 and younger people have easier access to the Internet. Also, considering 12 out of 14 Internet communities which agreed to post study announcement were Chinese communities, this may explain why we had more Chinese participants than the other 2 groups. Second, the numbers of participants in the intervention (n = 64) and control groups (n = 30) were uneven. Although it would have been preferable to have similar numbers of participants, considering that 25 participants in each group are sufficient for testing the preliminary effect of an intervention, the participants in our pilot study were enough for this purpose. It can be inferred that the participants had significant support and coaching needs because many participants assigned to the control group asked to move to the intervention group. To address this need and ensure fairness between the 2 groups, we extended the support and coaching that was provided to the intervention group to the control group after the study was completed. In addition, cluster sampling methods could be considered in future studies to achieve a certain number of participants from each subethnic group. Third, the background characteristics of the groups were different in many aspects. Although we statistically controlled for these differences when exploring the intervention effects, better randomization with a larger sample size would yield more reliable study findings.
Conclusions
The findings of this study support the preliminary efficacy of a technology-based culturally tailored cancer pain management program for Asian American breast cancer survivors. Based on the findings, we want to conclude with the following suggestions for future research and practice. First of all, we suggest that health care providers consider using technology-based interventions to improve the cancer pain experience of breast cancer survivors from racial and ethnic minority groups, including Asian Americans. As reported in this article, the CAPAA was effective in improving several patient outcomes related to cancer pain management. The inconsistencies in the literature on the effectiveness of technology-based interventions on patient outcomes could result from a lack of cultural tailoring in existing interventions. Thus, we strongly highlight the need for cultural tailoring of technology-based interventions for future use by racial and ethnic minorities. In addition, it is essential to test the CAPAA using a larger sample with diverse groups of Asian American breast cancer survivors in future studies. Moreover, we recommend adopting objective methods to measure outcome variables and exploring the association of background and disease factors with outcome variables in future research. Analyzing the actual usage of the CAPAA, including participants' time spent on each section and its relationship with outcome variables, would be an interesting topic for future studies. In addition, as discussed previously, a longer intervention period needs to be considered in further work.
References