Introduction

Treatment summary and survivorship care plan (TSSCP) studies are at the forefront of research priorities [1, 2] with a precedence for ethnic minority inclusion in these investigations. Ethnic minorities bear an unequal burden of cancer [3] warranting the National Institutes of Health (NIH) [4], National Cancer Institute (NCI) [5], Centers for Disease Control [6], Agency for Healthcare Research and Quality (AHRQ) [7], and American Cancer Society (ACS) [8] joining the Institute of Medicine’s (IOM) urgent call for cancer research to address health disparities and bring cancer equity. Further, ethnic minority representation among the general population is rapidly growing and currently at 36.6 % [9], and importantly their numbers among cancer survivors are steadily increasing and approaching 25 % of the <5 year cancer survivor population [10].

With the aim of improving disease-free survival, surveillance, quality post acute treatment care, and health related quality of life (HRQOL), the IOM recommends providing patients with a TSSCP that documents treatment summary, potential medical side effects, surveillance and follow-up care guidelines, and health advisories and HRQOL issues [1]. Further, the American College of Surgeons’ Commission on Cancer (CoC) mandates the implementation of TSSCP by 2015 [2]. The sparse literature on TSSCP with Latinos underscores inadequate medical, health advisories, and psychosocial information that are culturally and linguistically responsive [11]. Further, there is only one available TSSCP template provided by the LiveStrong foundation that targets Latinos [12]. However, no data has been published on the utilization of the LiveStrong Spanish template, and current limitations exist including implementation primarily within major university- or research-affiliated cancer centers; Online availability, only; and the generation of the TSSCP in Spanish or English. Thus, to date, the generation of a comprehensive bilingual TSSCP that facilitates enhanced survivorship care communication between Spanish language preferred patients and their providers is not possible.

The impact of cancer among US Latinos has increased in public awareness and is gaining significance in public health [13] and in genetic [14], clinical [15], and behavioral research [16–18] as cancer is the number one cause of death among Latinos [15]. Moreover 7 % of the total expected cancer cases will be Latinos [19]. Breast cancer is the most common cancer and most common cause of cancer death among Latinas [13, 15]. Moreover, immerging research suggest that Latinas are overrepresented among women who are diagnosed with premenopausal breast cancer [20]. California State data shows that 34 % of Latinas diagnosed with breast cancer are <45 years [21]. Further, Latinos represent 17 % of the US population and over 50 % speak Spanish in the home and prefer to communicate in Spanish [9].

Latinas are at greater risk for poor medical outcomes, psychological burden, and are confronted with elevated rates of distress, depression, anxiety, and psychosocial strain [16, 18]. Further, Latinas diagnosed with breast cancer face deleterious prognostic factors that may stem from diagnostic and therapeutic delays [13, 22], treatment nonadherence [13], treatment dissatisfaction [23], poor provider communication [23], uncoordinated care [24], and inadequate knowledge of surveillance and follow-up care guidelines [25]. Hence, providing Latina patients with TSSCP may improve quality post acute treatment and follow-up care, adherence to surveillance, and enhanced self-care.

This paper presents important procedures in the Spanish language transcreation of the ASCO breast cancer treatment summary template. In addition, the paper provides the findings of the preliminary diverse stakeholder evaluation of the transcreated TSSCP-S.

Method

Methodological framework

This project employed a two-component (development of TSSCP-S and evaluation of TSSCP-S) and mixed-methods approach. This study was grounded in a community-based participatory research (CBPR) approach that builds upon a series of research and projects conducted by the Center of Community Alliance for Research and Education (CCARE) with community partners. CBPR is a process and methodological framework that adheres to a collaborative approach between scientific and community partners/researchers sharing ownership and involvement in all aspects of the study [26, 27]. Additionally, the TSSCP-S template development was guided by the Shared Care [28] and Psychooncology Models [29, 30], and Contextual Model of Health Related Quality of Life [31]. The Contextual Model provides the cultural dimensions that are relevant to the health advisories and HRQOL domains of the TSSCP-S template, particularly as it relates to the lived experiences of LCA including cultural health practices (spirituality) and socioecological burden (language, immigration) that impact survivorship outcomes and follow-up care. The Shared Care Model [28] brings primary and oncology providers to coordinate follow-up care, and the psychooncology framework is particularly relevant to comprehensive patient-centered care, and defines the following three areas pertinent to health advisories and HRQOL: (1) overcoming health system and patient barriers to psychooncology care (e.g., providing resources for access and treatment); (2) addressing patient quality care (e.g., facilitating patient-provider communication); and (3) facilitating symptom management and relief (e.g., improving medical and self-care adherence by referring patients to cancer and community resources, social services, and supportive care) [29, 30].

Participants

Twelve (12) Latina breast cancer (LCA) survivor/advocates were recruited to form a consensus building group to inform the development of resources and TSSCP for Latinos. Participants were recruited from local Latina-focused cancer support and health advocacy groups focusing on breast health and survivorship issues such as Komen and The Cancer Support Community. Participants’ age ranged from 40–54 (M = 48.2; SD = 4.97). Participants were 2–11 years post-diagnosis, and reported being initially diagnosed at stages 1 (27 %), 2 (64 %), and 4 (9 %). Age at initial breast cancer diagnosis ranged from 33–45 (M = 40.9; SD = 3.53). These survivor/advocates represented Latina country of origin diversity in Los Angeles [9]. Seven were Mexican-American, three were Central American, and two were South American.

Also, 10 diverse stakeholders were enlisted from hospitals and Latino focused advocacy organizations (i.e., Latinas Contra Cancer) and support groups to form a consensus team to evaluate the TSSCP-S. Evaluators consisted of health professionals (i.e., two oncologists, one breast cancer surgeon, one primary care physician, two nurses, one genetic counselor), and two survivors, and one community advocate. These evaluators also represented diverse Latino heritage; four were Mexican-Americans, two were Central Americans, three were South Americans, and one was Cuban American.

All evaluators had at least 4 years experience serving diverse populations of cancer survivors with a focus on underserved and ethnic minority patients including LCA.

Procedure

Development of TSSCP-S

We conducted two consensus meetings with LCA survivors/advocates (n = 12). Institutional Review Board approval from participating entities was obtained, and all participants signed an informed consent form to participate and to be audio-recorded and were informed that the information gathered would contribute towards culturally and socioecologically responsive modifications to the content and structure of a Spanish language TSSCP that attended to the targeted population by being clinically, culturally, and linguistically responsive. We focused on LCA’s need for their treatment-related information and surveillance guidelines particularly since Latinas are overrepresented among women diagnosed with premenopausal breast cancer. We also attended to Latinas’ limited access to resources, and on cultural, clinical, and socioecological contexts that are relevant to the transcreation of the American Society of Clinical Oncology (ASCO) Breast Cancer Adjuvant Treatment Plan and Summary and Survivorship Care Plan [32] to create the TSSCP-S targeting Latinas. The ASCO TSSCP template includes the standard components recommended by the IOM, including cancer-related information (i.e., treatment history, side effects), and follow-up care/surveillance, health advisories, and HRQOL information. LCA completed a short questionnaire that included demographic and breast cancer-related medical information and were provided with information about the TSSCP general content and structure.

Evaluation of TSSCP-S

This preliminary study joined the advocacy, scientific, and medical communities to comprise a 10-member diverse stakeholder review group to evaluate the TSSCP-S and the TSSCP-ASCO templates. The evaluation form and copies of the TSSCP-S and TSSCP-ASCO with a description of the evaluation project were e-mailed to the evaluators. The evaluators were asked to rate the templates using the 21-item evaluation form. Each item on the evaluation form (e.g., “How well does the TSSCP present information relevant to LCA?”) was rated on a 4-point scale (1 = Poor to 4 = Excellent). The evaluation form provided space for written comments and critique of the templates. The completed evaluations were all returned via e-mail.

Data analyses

Development of TSSCP-S

The data derived from the consensus groups were thematically coded by two independent members of the research team. After the coding process, the research team met to review and discuss the group data and recommendations on the relevant cultural and socioecological input for the TSSCP-S. Next following the consensus groups’ recommendations (Table 1), the research team generated the TSSCP-S template.

Table 1 LCA Recommended Modifications to the TSSCP-ASCO template by domain
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Evaluation of TSSCP-S

Quantitative analysis

All quantitative evaluative data were entered into SPSS v.20 [33]. Evaluation items were summed to generate overall scores for each of the five evaluative domains: content, clarity, utility, cultural and linguistic responsiveness, and socioecological responsiveness. Wilcoxon signed rank tests were used to compare ratings on each domain for the TSSCP-S and TSSCP-ASCO templates.

Qualitative analysis

Data from the written comments were independently coded and organized by two researchers by domain (e.g., utility, clarity, cultural, and linguistic issues). The researchers first coded the data and then met to compare their independent coding and resolve any discrepancies. After resolving discrepancies and agreeing on the coding of the data, one of the researchers revised the codes in order to incorporate and reflect the agreed upon codes. The data was then organized into a matrix according to the evaluation domains.

Results

Development of TSSCP-S

The LCA noted that cancer characteristics are central to determining needs and related resources; therefore stage, age at diagnosis, cancer type, genetic risk, and years since diagnosis should inform targeted resources. LCA recommended that the TSSCP should be responsive to patient cancer and health status to guide best care. In terms of cultural relevance, LCA recommended that cultural relevance in TSSCP templates can be achieved via appropriate content, imaging, and Spanish language translation. LCA also noted the importance of incorporating information responsive to cultural values (familism, trust, respect) and social practices including spirituality (prayer and faith) and family support. For the socioecological context, LCA indicated that the phase of life and living contexts must be considered. They recommended that age, marital status, family constellation, career/work, and neighborhood are important factors impacting the cancer experience and influence resource needs, and must be addressed in the TSSCP. LCA reported that health advisories, HRQOL and supportive care information and resources are inadequately documented and discussed. LCA recommended that health advisories including physical activity and nutrition guidelines and HRQOL resources should be included in the TSSCP. LCA encouraged patient activation as part of the process of TSSCP implementation, “To participate as part of one’s own care team is a must, despite cultural traditions such as “respeto.” One advocate stated, “An involved patient is an advocate for herself, and this is often passed to others.” LCA indicated that patient activation can be achieved via peer support, navigation, and advocacy training. These findings informed the development of the TSSCP-S targeting Latinas.

Overall, the development of the TSSCP-S template was informed by the cultural data derived from the consensus group and the literature [13, 16, 17, 34] and (1) contains clarifications and definitions; (2) specifies the purpose, use, and benefits of the TSSCP; and (3) presents treatment summary and surveillance guidelines; health status and comorbidities; provider contacts and referrals; and health advisories, quality of life, and community and national resources focusing on the health risk and needs of LCA. The TSSCP-S template is designed as a road map with information and guidelines for optimal patient follow-up care, surveillance, and survivor-directed self-care. The reading level of the TSSCP-S was 10.4 according to the Flesch-Kincaid reading level due to the medical terminology used in the treatment summary section; however, it was lower than the ASCO TSSCP template reading level of 13.7. The TSSCP-S template was translated into a bilingual (English-Spanish) format (Fig. 1) through the application of a rigorous forward translation, reconciliation, back translation, and multiple reviews [35, 36].

Fig. 1
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TSSCP-S

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Evaluation of TSSCP-S

Quantitative findings

The Wilcoxon signed rank test analyses comparing the ratings of the TSSCP-S and TSSCP-ASCO templates indicate that the TSSCP-S template was rated more favorably on several domains. Specifically, the TSSCP-S had higher ratings on content (Z = −2.31, p = 0.02), clarity (Z = −2.25, p = 0.02), utility (Z = −2.03, p = 0.04), cultural and linguistic responsiveness (Z = −2.18, p = 0.03), and socioecological responsiveness (Z = −2.52, p = 0.01). These results suggest that the TSSCP-S achieved clinical, cultural, and socioecological responsiveness relevant to the LCA population.

Qualitative findings

Health professional evaluators provided written comments based on their assessment of both templates (Table 2). Several evaluators noted that the TSSCP-S template was more patient-user-friendly, “The [TSSCP-S] template has vocabulary that is simple; especially the care plan components are understandable to patients.” Other evaluators noted that they liked that the template was bilingual with Spanish translations adjacent to the English text, “I like it because the translations in Spanish are next to English” and “I appreciate the bilingual format so that patients and their clinician can be on the same page.” Other evaluators noted that the quality, amount of detail, and information provided in the form was good. For instance, one respondent noted that the “[TSSCP-S] template has an introduction and narrative which is good for primary care providers and patients, especially nondominant cultures.”

Table 2 Key themes from evaluators organized by domain
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Written comments coded as “constructive critiques” were made by four evaluators about the medical terminology. Evaluators noted that perhaps some more commonly-used Spanish words might be used to replace some of the ones selected by the template translators. Others noted that there was plenty of medical terminology that makes the form appear as though it is geared towards the medical providers as well. Perhaps, some of the reviewers did not comprehend that while the TSSCP-S template was modified to be more accessible to patients, it is still a medical form that should be completed by the patient’s medical providers.

Discussion

This paper describes important initial procedural components in the Spanish language transcreation of the ASCO breast cancer treatment summary template. The paper also provides the findings of the preliminary diverse stakeholder evaluation of the transcreated TSSCP-S. The work and findings presented are necessary preliminary tasks required for the development of a clinically and linguistically responsive TSSCP that is intended to educate, increase treatment and surveillance compliance, and ultimately improve survivorship outcomes and survival.

As hospitals gear up for the implementation of the CoC TSSCP provision in 2015, the need for linguistically appropriate templates is evident. Therefore, this study is responsive to the CoC requirement, as this study may inform the development of TSSCP templates responsive to underserved cancer patients. Further, this study attempts to address a critically important issue in TSSCP development and implementation, namely compliance with culturally and linguistically appropriate services in health care (CLAS) [37].

The results of the evaluation served to improve the cultural and linguistic responsiveness of our TSSCP-S. While most evaluators’ comments were positive, a few evaluators provided written critiques to further improve the TSSCP-S template, such as suggestions to address socioecological specific issues, and to include information on survivorship resources that do not require Internet access. Results from our LCA consensus groups found that most LCA preferred print materials because not everyone has online access and some even felt that print materials were more credible than online sources. Even those that currently had online access and used the Internet were more comfortable with print materials. Our findings support existing research indicating that print-based and non-Internet based resources are more readily usable and accessible to persons 50 and over with limited Internet access and experience [38]. Thus, phone numbers for advocacy organizations and resources were added to increase utility for all populations. The comment regarding access to TSSCP among very low-income LCA is very important. Lower socioeconomic status and related issues are major concerns among a significant proportion of our LCA as well as in underserved populations. The quality and access to care for LCA and other ethnic minority cancer patients remain critical challenges that result in disparate cancer outcomes requiring greater public health, health policy and practice, and research attention [39].

Finally, the evaluators made the comment that physicians might not have the time to fill out this template. A similar concern was expressed by health professionals in a qualitative study [40] that examined perspectives on the prospect of providing TSSCP for cancer survivors. However, reluctance to complete TSSCP for patients may be best addressed at the organizational level, especially since implementation of TSSCP for cancer survivors are mandated by 2015 by the CoC. To encourage TSSCP implementation, providers should have easy access to electronic medical records and insurance reimbursement for TSSCP template completion [40].

In summary, this is one of the first studies reporting on cultural and linguistic, clinical, and socioecological content modifications of TSSCP to increase its responsiveness and relevance for Latinas. Evaluators noted that the TSSCP-S template was more patient-centered and affirmed the utility, applicability, and acceptability of the TSSCP-S template. Moreover, the evaluators expressed that the TSSCP-S template was clear, informative, aesthetically appealing, and culturally relevant and competent. As suggested in previous studies [38, 41], modifications to documents, such as including culturally appropriate content and images, are generally considered ways in which to increase the acceptability and utility of health related materials for ethnic minority populations. Overall, our findings suggests that the TSSCP-S template significantly contributes towards filling scientific and clinical gaps with respect to improving posttreatment oncology care for underrepresented and underserved populations. Our multi-method process lends validity to study findings concerning the applicability and utility of the TSSCP-S with Latinas. Our study offers a practical and clinically relevant model for a TSSCP development and evaluative process that can be repeated to adapt the TSSCP template for various, targeted populations including ethnic and linguistic minority cancer survivors. This study is limited due to the small number of LCA who assisted in the development phase and the small number of stakeholder evaluators of the TSSCP-S template. However, although the LCA and evaluator consensus groups were small, they were heterogeneous in important aspects. Hence, the LCA informative group and the evaluators included diverse country of origin, and the evaluator included diverse stakeholder groups (i.e., providers and survivors) to increase representativeness and credibility. As well, further implementation investigation of the TSSCP-S with LCA will provide valuable information and results on the efficacy and effectiveness of our bilingual TSSCP template.

Health care delivery systems and providers’ support for the TSSCP implementation and evaluation is critical to its long-term success and effectiveness. Indeed, the barriers to obtaining a TSSCP, and the impact of adherence to the TSSCP recommendations on survival and survivorship outcomes warrants more research. Therefore, longitudinal research that examines the long-term benefits and costs of TSSCP implementation, including in vivo testing of the TSSCP-S template, must be conducted to advance the science and practice of TSSCP utilization.

This investigation is timely and contributes to the emerging science and practice of TSSCP provision. Latina’s high cancer-related morbidity and mortality evokes a critical need and urgency to improve surveillance and follow-up care documentation and implementation on the part of the medical team, and adherence on the part of the patient.

TSSCP that are responsive to the language needs of underserved patients and survivors are essential in providing culturally and linguistically competent care to improve patient education about their treatment and potential side effects, surveillance guideline, and hopefully enhance survival and survivorship. Our TSSCP-S was developed for the Spanish language patient to facilitate better communication with providers, understanding of clinically relevant information and resources, engagement in their cancer care, and improve adherence to the follow-up care recommendation. In addition, our approach and program of TSSCP development research may provide important details to inform the development of targeted TSSCP especially for at risk populations.