Multilevel intervention research: lessons learned and pathways forward

This summary reflects on this monograph regarding multilevel intervention (MLI) research to 1) assess its added value; 2) discuss what has been learned to date about its challenges in cancer care delivery; and 3) identify specific ways to improve its scientific soundness, feasibility, policy relevance, and research agenda. The 12 submitted chapters, and discussion of them at the March 2011 multilevel meeting, were reviewed and discussed among the authors to elicit key findings and results addressing the questions raised at the outset of this effort. MLI research is underrepresented as an explicit focus in the cancer literature but may improve implementation of studies of cancer care delivery if they assess contextual, organizational, and environmental factors important to understanding behavioral and/or system-level interventions. The field lacks a single unifying theory, although several psychological or biological theories are useful, and an ecological model helps conceptualize and communicate interventions. MLI research designs are often complex, involving nonlinear and nonhierarchical relationships that may not be optimally studied in randomized designs. Simulation modeling and pilot studies may be necessary to evaluate MLI interventions. Measurement and evaluation of team and organizational interventions are especially needed in cancer care, as are attention to the context of health-care reform, eHealth technology, and genomics-based medicine. Future progress in MLI research requires greater attention to developing and supporting relevant metrics of level effects and interactions and evaluating MLI interventions. MLI research holds an unrealized promise for understanding how to improve cancer care delivery.     

Health reforms as examples of multilevel interventions in cancer care

To increase access and improve system quality and efficiency, President Obama signed the Patient Protection and Affordable Care Act with sweeping changes to the nation's health-care system. Although not intended to be specific to cancer, the act's implementation will profoundly impact cancer care. Its components will influence multiple levels of the health-care environment including states, communities, health-care organizations, and individuals seeking care. To illustrate these influences, two reforms are considered: 1) accountable care organizations and 2) insurance-based reforms to gather evidence about effectiveness. We discuss these reforms using three facets of multilevel interventions: 1) their intended and unintended consequences, 2) the importance of timing, and 3) their implications for cancer. The success of complex health reforms requires understanding the scientific basis and evidence for carrying out such multilevel interventions. Conversely and equally important, successful implementation of multilevel interventions depends on understanding the political setting and goals of health-care reform.     

Computational modeling and multilevel cancer control interventions

This chapter presents an overview of computational modeling as a tool for multilevel cancer care and intervention research. Model-based analyses have been conducted at various "beneath the skin" or biological scales as well as at various "above the skin" or socioecological levels of cancer care delivery. We review the basic elements of computational modeling and illustrate its applications in four cancer control intervention areas: tobacco use, colorectal cancer screening, cervical cancer screening, and racial disparities in access to breast cancer care. Most of these models have examined cancer processes and outcomes at only one or two levels. We suggest ways these models can be expanded to consider interactions involving three or more levels. Looking forward, a number of methodological, structural, and communication barriers must be overcome to create useful computational models of multilevel cancer interventions and population health.     

Multilevel interventions: study design and analysis issues

Multilevel interventions, implemented at the individual, physician, clinic, health-care organization, and/or community level, increasingly are proposed and used in the belief that they will lead to more substantial and sustained changes in behaviors related to cancer prevention, detection, and treatment than would single-level interventions. It is important to understand how intervention components are related to patient outcomes and identify barriers to implementation. Designs that permit such assessments are uncommon, however. Thus, an important way of expanding our knowledge about multilevel interventions would be to assess the impact of interventions at different levels on patients as well as the independent and synergistic effects of influences from different levels. It also would be useful to assess the impact of interventions on outcomes at different levels. Multilevel interventions are much more expensive and complicated to implement and evaluate than are single-level interventions. Given how little evidence there is about the value of multilevel interventions, however, it is incumbent upon those arguing for this approach to do multilevel research that explicates the contributions that interventions at different levels make to the desired outcomes. Only then will we know whether multilevel interventions are better than more focused interventions and gain greater insights into the kinds of interventions that can be implemented effectively and efficiently to improve health and health care for individuals with cancer. This chapter reviews designs for assessing multilevel interventions and analytic ways of controlling for potentially confounding variables that can account for the complex structure of multilevel data.     

Disparities in cancer care among racial and ethnic minorities

The 2005 National Health Disparities Report found disparities related to race, ethnicity, and socioeconomic status in the United States health-care system. While varying in magnitude, disparities were observed in almost all aspects of health care including cancer. Disparities were noted across quality and access to health care, levels and types of health care, various health-care settings, and within many subpopulations. In this review, we explore the disparities in cancer care among racial and ethnic minorities. In particular we consider numerous factors that may influence health care for racial and ethnic minority groups including socioeconomic issues, access, cultural beliefs, risk factors, and comorbidities. Although there are extensive confounding factors that vary with each subgroup, trends that may help individual practitioners better understand this complex issue become evident through closer evaluation of available data.     

Multilevel factors affecting quality: examples from the cancer care continuum

The complex environmental context must be considered as we move forward to improve cancer care and, ultimately, patient and population outcomes. The cancer care continuum represents several care types, each of which includes multiple technical and communication steps and interfaces among patients, providers, and organizations. We use two case scenarios to 1) illustrate the variability, diversity, and interaction of factors from multiple levels that affect care quality and 2) discuss research implications and provide hypothetical examples of multilevel interventions. Each scenario includes a targeted literature review to illustrate contextual influences upon care and sets the stage for theory-informed interventions. The screening case highlights access issues in older women, and the survivorship case illustrates the multiple transition challenges faced by patients, families, and organizations. Example interventions show the potential gains of implementing intervention strategies that work synergistically at multiple levels. While research examining multilevel intervention is a priority, it presents numerous study design, measurement, and analytic challenges.     

Health service provider responses to indigenous peoples with cancer: An integrative review

Indigenous populations around the world have a higher burden of cancer incidence, severity and mortality. This integrative review aims to identify and appraise the evidence of health providers’ responses to the issue of indigenous peoples with cancer. A surprisingly small number of studies were found (n = 9) that reported on programmes and interventions for indigenous people with cancer, the majority of which were from the USA. Our review shows that a service delivery approach that is focused on the indigenous population and includes culturally appropriate activities, resources and environments resulted in an increase in cancer knowledge, reduction in treatment interruption, improved access to cancer care and enrolment in clinical cancer trials, and increased satisfaction with health care. However, the question of why there are so few published studies needs further consideration.     

IPOS Sutherland Memorial Lecture: psycho-oncology and health care research

Remarkable changes of health-care systems, increasing costs of health care and of social inequality in modern societies, an aging population and the increase of chronic illnesses such as cancer implicate various future challenges for the provision of health care. Health-care research aims to improve the effectiveness and efficiency of patient-oriented services involving the evaluation of innovative treatment approaches and settings. It deals with the patients' path through different areas of health-care systems in order to identify significant factors for the provision of quality assurance of structures and resources concerning treatments, processes and health outcomes. Health-care research focusses on three main topics that play an important role for quality management: (1) the admission to health-care services and assessment strategies including indication, utilization and specificity of settings and target groups; (2) the treatment process including the implementation, standardization and flexibility of services and dose-effect relationship of interventions; (3) health-care outcome including effectiveness and efficiency of interventions and services, the cost-benefit relationship and the transfer from research to health-care practice. Given the objectives of health-care research, the topics of health-care research in psychosocial care for cancer patients include the study of structural conditions of psycho-oncological services, the epidemiology of distress and mental disorders and the subjective need of psycho-oncological support in cancer patients, the improvement of psycho-oncological measures and assessment strategies in daily treatment, the study of psycho-oncological interventions under routine conditions, and quality assurance. Requirements of future health-care research and developments of psycho-oncology including aspects of orientation, strategies, health-care equity, and resources are discussed.     

Disparity in cancer care: a Canadian perspective

Canada is facing cancer crisis. Cancer has become the leading cause of death in Canada. Despite recent advances in cancer management and research, growing disparities in cancer care have been noticed, especially in socio-economically disadvantaged groups and under-served communities. With the rising incidence of cancer and the increasing numbers of minorities and of social disparities in general, and without appropriate interventions, cancer care disparities will become only more pronounced. This paper highlights the concepts and definitions of equity in health and health care and examines several health determinants that increase the risk of cancer. It also reviews cancer care inequity in the high-risk groups. A conceptual framework is proposed and recommendations are made for the eradication of disparities within the health care system and beyond.     

Identifying Health Literacy and Health System Navigation Needs among Rural Cancer Patients: Findings from the Rural Oncology Literacy Enhancement Study (ROLES)

Rural residence is associated with disparities in cancer-related outcomes. Guided by the Chronic Care Model (CCM), the Rural Oncology Literacy Enhancement Study (ROLES) assessed health literacy and patient navigation needs among rural cancer patients. A mixed methods (qualitative and quantitative) approach was used, including: in-depth interviews, health literacy assessments, and phone surveys with cancer patients (N?=?53) from 5 oncology clinics in rural Wisconsin; focus groups and self-administered surveys with staff (N?=?41) in these clinics. Within four dimensions of the CCM (community resources, self-management support, delivery system design, and decision support), this study uncovered multiple unmet navigation needs, health literacy limitations, and barriers to quality cancer care. System-level implementation of patient navigation and health literacy best practices could contribute to improved cancer care and patient outcomes among rural populations. Further research identifying effective interventions that reduce cancer disparities among rural cancer patients is necessary.     

Equitably improving outcomes for cancer survivors and supporting caregivers: A blueprint for care delivery,research, education,and policy

Cancer care delivery is being shaped by growing numbers of cancer survivors coupled with provider shortages, rising costs of primary treatment and follow-up care, significant survivorship health disparities, increased reliance on informal caregivers, and the transition to value-based care. These factors create a compelling need to provide coordinated, comprehensive, personalized care for cancer survivors in ways that meet survivors’ and caregivers’ unique needs while minimizing the impact of provider shortages and controlling costs for health care systems, survivors, and families. The authors reviewed research identifying and addressing the needs of cancer survivors and caregivers and used this synthesis to create a set of critical priorities for care delivery, research, education, and policy to equitably improve survivor outcomes and support caregivers. Efforts are needed in 3 priority areas: 1) implementing routine assessment of survivors’ needs and functioning and caregivers’ needs; 2) facilitating personalized, tailored, information and referrals from diagnosis onward for both survivors and caregivers, shifting services from point of care to point of need wherever possible; and 3) disseminating and supporting the implementation of new care methods and interventions.     

Implementation and spread of interventions into the multilevel context of routine practice and policy: implications for the cancer care continuum

The promise of widespread implementation of efficacious interventions across the cancer continuum into routine practice and policy has yet to be realized. Multilevel influences, such as communities and families surrounding patients or health-care policies and organizations surrounding provider teams, may determine whether effective interventions are successfully implemented. Greater recognition of the importance of these influences in advancing (or hindering) the impact of single-level interventions has motivated the design and testing of multilevel interventions designed to address them. However, implementing research evidence from single- or multilevel interventions into sustainable routine practice and policy presents substantive challenges. Furthermore, relatively few multilevel interventions have been conducted along the cancer care continuum, and fewer still have been implemented, disseminated, or sustained in practice. The purpose of this chapter is, therefore, to illustrate and examine the concepts underlying the implementation and spread of multilevel interventions into routine practice and policy. We accomplish this goal by using a series of cancer and noncancer examples that have been successfully implemented and, in some cases, spread widely. Key concepts across these examples include the importance of phased implementation, recognizing the need for pilot testing, explicit engagement of key stakeholders within and between each intervention level; visible and consistent leadership and organizational support, including financial and human resources; better understanding of the policy context, fiscal climate, and incentives underlying implementation; explication of handoffs from researchers to accountable individuals within and across levels; ample integration of multilevel theories guiding implementation and evaluation; and strategies for long-term monitoring and sustainability.     

Healthcare delivery interventions to reduce cancer disparities worldwide

Globally, cancer care delivery is marked by inequalities, where some economic, demographic, and sociocultural groups have worse outcomes than others. In this review, we sought to identify patient-facing interventions designed to reduce disparities in cancer care in both high- and low-income countries. We found two broad categories of interventions that have been studied in the current literature: Patient navigation and telehealth. Navigation has the strongest evidence base for reducing disparities, primarily in cancer screening. Improved outcomes with navigation interventions have been seen in both high- and low-income countries. Telehealth interventions remain an active area of exploration, primarily in high income countries, with the best evidence being for the remote delivery of palliative care. Ongoing research is needed to identify the most efficacious, cost-effective, and scalable interventions to reduce barriers to the receipt of cancer care globally.     

Racial/Ethnic Disparities in Breast Cancer Incidence,Risk Factors,Health Care Utilization,and Outcomes in the USA

Purpose of the Review

This review examines racial/ethnic disparities in female breast cancer within the USA. Specifically, differences in breast cancer incidence, risk factors, health care utilization use, and outcomes among Caucasians and non-Caucasians are explored.

Findings

In the USA, there are striking racial/ethnic disparities for female breast cancer. The etiology of these disparities is likely multi-factorial, including genetic, behavioral, socio-cultural, and environmental elements. Relative to Caucasian women, African American, Hispanic, and Asian/Pacific Islander breast cancer patients generally have a lower survival rate and worse prognosis despite lower incidence rates. They also tend to have more associated health problems and unmet psychosocial needs.

Summary

Breast cancer patients are heterogeneous with respect to their race, cultural background, socioeconomic status, behavioral profile, and disease pathophysiology, and these factors impact health outcomes and health care needs. To reduce disparities and improve health outcomes in minority women, a multifaceted approach is required that includes efforts to minimize barriers to health care access, enhance cancer screening rates, and increase the use of culturally sensitive interventions designed to reduce symptom burden and enhance quality of life.

     

Radiotherapy service delivery models for a dispersed patient population

Access to health care interventions can be impeded when significant patient travel is required. In this economic evaluation we compare, from a societal perspective, three scenarios for the delivery of radiation treatment to an idealized population of 1,600 patients distributed between two urban nodes (1,200 + 400 patients each) separated by up to 500 km. As it is implicitly assumed that the clinical outcome for those patients who access the system is independent of the service delivery model, this study constitutes a cost minimization analysis from a societal perspective. The costs to the health care system are based on an activity costing model developed by us and consistent with recent Canadian studies. The costs to the patient are approximated by a formula that includes direct costs (travel and accommodation) and indirect (time) costs, with the latter based on a human capital approach. A sensitivity analysis has been performed to confirm the robustness of our conclusions both to uncertainties in the input data and to the inclusion of time costs, the estimation of which remains controversial. From a societal cost perspective only, we show that outreach radiotherapy (central comprehensive facility and satellite) is the economically superior service delivery model for separations between 30 km and 170 km. Beyond 170 km, a fully decentralized service would be warranted if the only consideration were societal economic advantage.     

Factors Associated with Perceptions of the Cancer Care System: A Multilevel Modeling Approach

Perceptions about the health care system are a key driver of disparities and utilization. This study examined individual and contextual factors related to care and noncare dimensions and their relationship to perceptions of the cancer care system. A national sample of 877 cases was modeled using a multilevel modeling approach. Insurance complaints, number of treatments, and advocacy impact were negatively associated with satisfaction with the cancer care system at the individual level. Also, respondents in states where more Christians resided and lower hospital capacity were more likely to indicate satisfaction. Findings suggest implications for practitioners and health policy makers.     

The future of tobacco-control research.

Recent epidemiologic data on the stabilization of adult and youth smoking rates underscore the need for vigorous research across the cancer control spectrum on tobacco use interventions. The steady decline in adult rates of smoking has stalled for the first time in 8 years, and certain race, ethnic, and population groups are disproportionately at risk to tobacco-related cancers because of disparities in tobacco use or access to effective interventions. Although substantial progress has been made across levels of basic through applied research, tobacco-control research across the discovery and delivery continuum must be accelerated to further reduce the cancer burden. Following a brief review of the prevalence and trends affecting tobacco use initiation and cessation, we identify and describe four domains of extraordinary research opportunities: genetics and gene-environment interactions, bioinformatics and health informatics, disparities and disproportionate risk, and prevention and treatment. Evolutionary scientific changes, like rapidly advancing technology and emphasis on the paradigm of team science research approaches, provide both a challenge as well as unparalleled opportunities for scientific advancement and public health progress.     

A framework for rehabilitation for cancer survivors

This paper introduces a theoretical framework that recognises the rehabilitation needs of people who have cancer and offers a multi‐tiered model to meet these needs. Various models for providing survivorship care have been previously proposed, giving rise to multiple possible delivery systems. Existing cancer rehabilitation frameworks recognise different phases of illness, goals of care and the need for services at all stages of illness. The ‘Stained Glass Cancer Rehabilitation Framework’ incorporates survivor needs and rehabilitation modalities, arranged in a practical hierarchy and builds on earlier models. A broad view of rehabilitation services considers complexity, temporal and geographic factors. Recognition that needs emerge over time demands a routine long‐term approach to screening for physical, functional and psychosocial rehabilitation needs by medical and other health professionals. New methods of care delivery and coordination from specialist to primary care settings are needed, long after treatment is completed. Service delivery infrastructure supported by funding reform and training of rehabilitation professionals in delivering appropriate interventions for cancer survivors is essential, together with more research into cancer rehabilitation interventions, functional outcomes and their delivery.     

Bridging the urological divide

The advanced disease clinical presentations, higher morbidity and mortality rates and lack of available treatment options in prostate cancer care, attest to disparities in the delivery and outcomes of urological services in Black men of African lineage in both the Developed and Developing countries. This gap in health care and services in the global management of prostate cancer denotes the urological divide.Through the experience of a Developing country urologist with a comparative literature review, this presentation defines the determinants of the disparity through deficiencies in human, material and financial resources, as is most prevalent in Developing countries.Solutions to ending health care disparities must take into account the existing development phase of Third World countries and thus determine whether the Developed countries should export a total service delivery system or seek primarily to advance the competence and skills of the existing Developing country resources.Collaboration in prostate cancer research has the greatest promise and sustainability of bridging this urological divide and is of mutual benefit to both entities.