Identifying Strategies for Robust Survivorship Program Implementation: A Qualitative Analysis of Cancer Programs

PURPOSE:

The Commission on Cancer seeks to promote robust survivorship programs among accredited cancer programs. In practice, cancer programs' survivorship programs range from cursory (eg, developing care plans without robust services) to robust (eg, facilitating follow-up care). To inform cancer programs' future efforts, in this study, we identified the implementation strategies that cancer programs used to achieve robust survivorship programs, distinguishing them from cursory programs.

METHODS:

We sampled 39 cancer programs across the United States with approaches to survivorship program implementation ranging from cursory to robust on the basis of LIVESTRONG survivorship care consensus elements. Within sampled cancer programs, we conducted in-depth semistructured interviews with a total of 42 health care professionals. We used template analysis to distinguish implementation strategies used in cancer programs with robust survivorship programs from strategies that yielded cursory survivorship programs.

RESULTS:

Cancer programs with robust survivorship programs established clear systems survivorship care and formal committees to improve the survivorship care processes. They sought buy-in from multiple stakeholders to leverage cancer program resources and defined clear roles with shared accountability among multidisciplinary groups. By contrast, cancer programs with cursory survivorship programs reported less consistency in survivorship care processes and lacked buy-in from key stakeholders. They had limited resources, faced persistent structural concerns, and had insufficient clarity in roles among team members.

CONCLUSION:

Accrediting bodies may consider incorporating the implementation strategies that robust survivorship programs have used as guidance for supporting cancer programs in operationalizing survivorship care and evaluating the use of these strategies during the accreditation and review process.

INTRODUCTION

Care for the 16.9 million cancer survivors in the United States is often uncoordinated,¹ at times resulting in duplicated or omitted services, poor health outcomes,^2,3 and substantial costs to survivors, caregivers, and the US health care system.⁴ Cancer survivors are at increased risk for late effects of therapy, chronic comorbidities, anxiety, depression, diminished quality of life,⁵ and financial distress.⁶

To optimize cancer survivors' outcomes, scholars and practitioners have sharpened their focus on improving survivorship care coordination.⁷ In 2006, the Institute of Medicine (currently the National Academy of Medicine) issued a seminal report From Cancer Patient to Cancer Survivor: Lost in Transition, outlining recommendations to provide coordinated, comprehensive follow-up care to patients upon completion of cancer treatment. In response to this recommendation, several guidelines have emerged. The American Cancer Society created survivorship guidelines for the follow-up care of cancer survivors by working with multidisciplinary expert workgroups.⁸ In 2011, the Livestrong Foundation convened the Essential Elements of Survivorship Care Meeting with the goal of building consensus among stakeholders on the essential elements of survivorship care.⁹

In 2015, the Commission on Cancer (CoC) introduced their first survivorship care standard (3.3), which required programs to provide survivorship care plans (SCPs) containing elements delineated by ASCO¹⁰ to an increasing percentage of patients treated with curative intent. Although this was considered a reasonable first step, it did not assure that survivorship services were adequately provided to these patients. With the premise that coordinated care may be facilitated by a robust survivorship program, including effective and efficient communication among care teams,^11,12 the CoC revised its survivorship standard (4.8) in 2020¹³ requiring that cancer programs develop a comprehensive survivorship program to ensure that the breadth of cancer survivors' needs is being met. The program is mandated to include (1) designating a survivorship coordinator who will report to the cancer committee, (2) identifying a survivorship program team including its designated coordinator and members, and (3) documenting for annual monitoring or evaluation of a minimum of three services affecting survivors.¹⁴

Despite their potential to improve survivorship care coordination, in many cases, survivorship care guidelines lack recommendations for implementation—ie, how guidelines can be operationalized in practice. Perhaps due in part to a lack of implementation guidance, cancer programs often struggle to implement guidelines.^8,10,15,16 Without further guidance, some approaches to implementation may sometimes lead to superficial and ineffective survivorship care. The objective of this study was to generate implementation guidance by identifying strategies that cancer programs have used to achieve robust survivorship programs.

METHODS

Study Setting and Population

The CoC is a program of the American College of Surgeons. CoC recognizes cancer care programs for their commitment to providing comprehensive, high-quality, and multidisciplinary patient-centered care. The CoC accreditation process involves measuring performance with respect to quality benchmarks; there are more 1,500 accredited programs in the United States. This study was conducted among 39 cancer programs across the United States and was approved by the institutional review board at the University of North Carolina at Chapel Hill.

Recruitment

To promote study participation, we collaborated with the CoC Chair (L.N.S.) and staff. UNC staff (L.V. and C.B.) sent a recruitment e-mail authored by L.N.S. to CoC liaisons in cancer programs that were among either the highest- or lowest-performing with respect to the CoC's previous survivorship care standard (3.3), inviting the facility's CoC liaisons to participate in the study or to refer to other potential staff.¹⁷ On a quarterly basis, accredited cancer programs' CoC liaisons (often a cancer registrar or similar) reported performance data. Approaches to collecting these data varied. Generally, CoC standard (3.3) performance was reflected in the proportion of eligible survivors who received SCPs. The initial point of contact in each program often referred to other providers or staff members who were involved in survivorship care planning. We used Dillman's methods to facilitate recruitment by intermittently alternating the mode and timing of recruitment contacts.¹⁸

Procedure

After obtaining informed consent, the study team conducted individual, semistructured telephone interviews. We developed our interview guide with the objective of assessing cancer survivorship programs' robustness and the strategies used to implement survivorship programs. The interview guide consisted of relevant questions and probes for each question to achieve our objective. We piloted the interview guide to ensure the clarity and relevance of the questions. We measured survivorship programs' robustness using the LIVESTRONG elements of survivorship care: Must, Should, and Strive elements of survivorship care (Appendix Table A1, online only).⁹ Using this measure, we classified cancer programs' survivorship care programs as either robust or cursory. None of the survivorship programs met elements from all tiers. Thus, we classified survivorship programs that fulfilled at least four of the consensus (must) elements from Tier 1 as robust and cursory otherwise (Fig 1). We operationalized survivorship program implementation strategies using the Expert Recommendations for Implementing Change (ERIC).¹⁹ Each interview lasted 20-45 minutes and was conducted by a subset of the study team with qualitative research experience. All interviews were audio-recorded and transcribed verbatim.

FIG 1.

Classification of robust and cursory cancer programs. SCP, survivorship care plan.

Analysis

Our analysis included data from interviews with 42 participants from 39 cancer programs. The interviews were conducted between December 2018 and April 2019. To ensure consistency in applying codes on the basis of LIVESTRONG elements for survivorship care and ERIC strategies,¹⁹ four authors collaboratively coded two transcripts and resolved discrepancies before independently coding the remaining transcripts. We used MaxQDA Analytics Pro (VERBI Software, 2016) to manage and code interview data.

To identify the strategies that cancer programs used to achieve robust survivorship programs, we compared strategies used to implement survivorship programs between cancer programs that had robust and cursory approaches with respect to the LIVESTRONG elements. Specifically, we wrote analytic memos²⁰ summarizing qualitative themes and patterns for each cancer program and to extract further meaning from code reports. Then, we looked for qualitative differences in (1) the types of strategies that cancer programs used and (2) the ways in which cancer programs pursued the strategies to implement survivorship programs.

RESULTS

Cancer Program Characteristics

The 39 cancer programs that participated in this study were located in 19 states of the United States. Of the 39 cancer programs, 33 cancer programs were CoC-accredited programs and six programs were nonaccredited cancer programs affiliated with CoC-accredited programs. Interview participants included directors, chairs (eg, director of oncology services and chair of cancer committee), nurse navigators or general registered nurses, and administrators (eg, clinical coordinator, cancer program coordinator, accreditation manager, and registrars).

Survivorship Program Robustness

Nine of the 39 cancer programs had robust survivorship programs; the other 30 cancer programs were cursory. Robust survivorship programs mailed SCPs to providers outside of their network, conducted follow-up phone calls, and aimed for survivorship-specific visits with a designated provider discussing the SCPs with patients. Cursory survivorship programs had less consistent approaches to delivering survivorship care services. Care coordination with primary care providers or other providers was often less formalized in these cancer programs.

Strategies for Implementing Survivorship Care Programs

Strategies fell into three domains: (1) establishing survivorship care processes, (2) stakeholder buy-in and engagement, and (3) organization-level support for staff hiring and role division and clarity. We sought to identify strategies that resulted in robust survivorship programs. We found that robust survivorship programs focused on a subset of ERIC strategies such as changing the record system for a systematic process, acquiring stakeholder buy-in via local consensus discussions, and revising professional roles to assign responsibilities that are appropriate and reasonable among health care professionals. On the basis of these strategies, we identified potential approaches for survivorship care programs to consider for further improvement (Table 1).

TABLE 1.

ERIC Strategies¹⁹ Used by Robust Cancer Programs and Potential Approaches for Cursory Cancer Programs to Consider

Survivorship Care Processes

Robust survivorship programs had clear systems of providing survivorship care. Most programs implemented a new system or platform allowing for SCP autopopulation to alleviate the burden of manually compiling comprehensive information. Revamping the electronic health record (EHR) system was another strategy that improved workflow and enabled tracking or identifying patients eligible for survivorship care services. Some survivorship programs also set up specific functions such as sending out reminders for primary care providers to view the record and SCP or triggering messages for nurse navigators and other designated staff to review and sign off. Some cancer programs with robust survivorship programs planned for changes in their survivorship care processes to occur in the near future. Planning for improvement in survivorship care processes was an ongoing initiative for robust survivorship programs to systematically fulfill requirements.

Cancer programs with robust survivorship programs also established internal auditing and feedback mechanisms to identify potential improvements and track patients' receipt of survivorship care. The auditing process helped some robust survivorship programs to assess whether patients' survivorship care needs were met.

Cancer programs with cursory approaches to survivorship care reported less consistency and predictability in survivorship care processes. Many cursory survivorship programs framed their approaches as a work in progress and reported spending considerable resources assessing readiness and identifying barriers and facilitators. In particular, many cursory survivorship programs struggled to identify and track eligible patients, document SCP delivery, and transmit comprehensive information to patients in a scalable manner, without intensive manual input.

Cancer programs with cursory approaches to survivorship care frequently cited efforts to tailor strategies and promote adaptability, often to maximize the use of the limited resources and available organizational bandwidth. These efforts included attempting to link the SCP to the pre-existing EHR, improving buy-in by leaving SCP delivery decisions to individual providers, and allowing for different services to be tailored by cancer type to navigate differences in staff buy-in better.

Stakeholder Involvement

Cancer programs with robust survivorship programs held regular meetings involving multiple stakeholders with comprehensive discussions. Meetings often used existing infrastructure such as cancer committee and tumor board meetings but sometimes involved generating new survivorship-specific subcommittee meetings. Stakeholder meetings served as a forum for recommending changes, discussing ways to improve survivorship care planning, reaching consensus among stakeholders, or persuading stakeholders to acknowledge the value of survivorship care. At times, these meetings had stronger authority to make recommendations than actual decisions since executing the decisions required additional input from individuals who did not participate in these regular meetings.

Most cancer programs with robust survivorship programs had widespread stakeholder buy-in. Oftentimes, early adopters and champions took ownership and initiated the development of a survivorship care program and sought leadership buy-in. This was not always a smooth pathway for cancer programs with robust survivorship programs, as they experienced initial resistance from leadership or providers. One cancer program described holding educational sessions on the value of the survivorship program for each department, resolving some stakeholder resistance.

Many cursory survivorship programs faced internal resistance from stakeholders, such as physicians and senior leadership. Many were in the process of formalizing advisory boards and workgroups to increase the visibility of survivorship efforts and improve accountability across different types of providers. Many cursory survivorship programs mentioned adding key stakeholders to more formal coalition or workgroups as a strategy to attain their buy-in and build consensus around survivorship services (eg, SCP template). Coalitions and workgroups were used to inform section chiefs and directors of cancer program service lines where fragmentation was an implementation concern. Even in the absence of explicit resistance, cursory survivorship programs lacked survivorship care champions.

Structural Support

Cancer programs with robust survivorship programs sought to revise or create survivorship-specific staff roles. Resources were available to hire additional staff to work primarily on cancer survivorship or create new clinical teams for multidisciplinary survivorship clinics. Many interviewees noted that additional staff members (eg, nurse navigators) were key in implementing robust survivorship programs to address patients' survivorship care needs.

Other programs revised roles to divide survivorship program responsibilities among existing providers and staff. One cancer program centralized identifying eligible patients for SCPs instead of delegating to tumor group–specific staff. At times, additional training was deemed necessary to orient staff to revised roles or positions. Depending on the structure of the robust survivorship programs, budgeting for new hires was challenging, particularly in the absence of adequate buy-in from leadership or limited budget for additional human resources.

Cancer programs with cursory approaches to survivorship care faced persistent structural concerns, such as organizational restructuring (eg, mergers, acquisitions, and joint ventures), which, at times, led to staff shortages and/or turnover, inability to leverage EHRs for SCP development, and poor coordination among providers.

Compliance with CoC standards often required more resources than cancer programs had available; however, cursory survivorship programs often mentioned high turnover among survivorship champions. These programs faced difficulties in filling positions relevant to survivorship care. Additionally, cancer programs with cursory approaches frequently lacked role division and clarity and looked to upper management, where available, for direct support and resources to design and implement survivorship programs. When upper managers supported survivorship program implementation, they lacked the resources to stay abreast of standards or manage survivorship care programs.

Limited bandwidth and resources caused cursory survivorship programs to avoid new or additional survivorship care delivery processes. In particular, the inability to leverage EHRs for comprehensive patient data limited cancer programs' ability to implement SCPs and develop survivorship care workflows. Some cancer programs with cursory survivorship programs worked with providers across different types of organizations (private facilities and community hospitals), fragmenting care (Table 2).

TABLE 2.

Illustrative Quotes Distinguishing Robust From Cursory Survivorship Programs by Theme

DISCUSSION

The strategies and approaches that we identified (Table 1) may guide cancer programs in implementing robust survivorship programs. Our findings also suggest that most cancer programs with robust survivorship programs had pre-existing infrastructure that might have enabled them to use these strategies; these strategies may not be viable with limited infrastructure (eg, budgets that do not allow for new staff hires).

In contrast to robust survivorship programs, cursory survivorship programs often faced challenges stemming from organizational restructuring in various forms: mergers, acquisitions, and joint ventures. In some cases, organizational restructuring resulted in improved survivorship quality; a cancer program's embeddedness in a larger health care system meant more cross-disciplinary collaboration, increased interoperability of EHRs, and a greater workforce. In other instances, organizational restructuring led to increased staff turnover and loss of institutional knowledge and stakeholder buy-in. At times, these cancer programs had difficulties in acquiring support from the leadership and establishing champions or early adopters. Applying the same standard to cancer programs with various sizes and context was something that cursory survivorship programs indicated as a main challenge.

Importantly, like cursory survivorship programs, cancer programs with robust survivorship programs faced challenges, such as tracking surgical patients who had few encounters. Cancer programs frequently struggled with implementing SCPs, one suggested component of survivorship programs. Some programs also indicated staff turnover and budget constraints. As an effort to mitigate these issues, cancer survivorship programs could explore opportunities for structural support from external organizations or entities. Most existing opportunities from the National Institute of Health are grants that require specific research question(s). There are a few opportunities from large academic cancer centers (eg, Dana-Farber Cancer Institute, Penn Medicine) regarding the philanthropic support, which are directed toward structurally supporting external cancer survivorship programs.

The factors that we found to influence survivorship program robustness were similar to those found in the study of survivorship care in the LIVESTRONG Survivorship Center of Excellence Network by Campbell et al²¹: diverse stakeholders (eg, nurse navigators, survivorship directors, and administrative personnel) improving the pre-existing infrastructure of cancer survivorship programs. Our findings extend the study by Campbell et al to explain how stakeholders improved their survivorship programs to deliver robust survivorship care.

This study had a number of limitations. Most of the cancer programs in this study were accredited by the CoC and thus may systematically differ from unaccredited cancer programs, particularly since 2015, CoC required programs to address survivorship. However, 70% of all patients with newly diagnosed cancer in the United States are treated at a CoC-accredited program.²² Future research should assess the extent to which the strategies that we identified generalize to other US cancer programs (accredited or not). Furthermore, the interview protocol attempted to obtain diverse perspectives by interviewing directors, nurse clinicians, and administrative staff; however, it is possible that other significant viewpoints (eg, physicians) were missed. Finally, our measure of survivorship program robustness (ie, LIVESTRONG elements) might have misrepresented survivorship program robustness. In reality, survivorship programs cannot be dichotomized into either robust or cursory. Alternative metrics of cancer survivorship quality exist, but they also have limitations including their focus and scope.^21-23 Further research is warranted to continue to refine measurements of survivorship program quality.

Despite these limitations, the study findings offer guidance for strategies to promote robust survivorship programs. Accrediting bodies may consider incorporating these strategies as guidance for supporting cancer programs in operationalizing survivorship care. In addition, collection of data around details of survivorship programs and their robustness will facilitate ongoing learning. The path for the development of optimal survivorship programs remains evolutionary. We still have a lot to learn.

APPENDIX

TABLE A1.

LIVESTRONG Essential Elements of Survivorship Care Delivery⁹

AUTHOR CONTRIBUTIONS

Conception and design: Deborah K. Mayer, Lawrence N. Shulman, Sarah A. Birken

Administrative support: Laura Viera

Provision of study materials or patients: Lawrence N. Shulman

Collection and assembly of data: Soohyun Hwang, Burcu Bozkurt, Tamara Huson, Sarah Asad, Laura Viera, Caroline Buse, Sarah A. Birken

Data analysis and interpretation: Soohyun Hwang, Burcu Bozkurt, Tamara Huson, Sarah Asad, Lauren Richardson, Joseph Amarachi Ogbansiegbe, Ted A. James, Deborah K. Mayer, Lawrence N. Shulman, Sarah A. Birken

Manuscript writing: All authors

Final approval of manuscript: All authors

Accountable for all aspects of the work: All authors

AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

Identifying Strategies for Robust Survivorship Program Implementation: A Qualitative Analysis of Cancer Programs

The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated unless otherwise noted. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO's conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/op/authors/author-center.

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