Laura P. Forsythe

Mental and Physical Health–Related Quality of Life among U.S. Cancer Survivors: Population Estimates from the 2010 National Health Interview Survey

Background: Despite extensive data on health-related quality of life (HRQOL) among cancer survivors, we do not yet have an estimate of the percentage of survivors with poor mental and physical HRQOL compared with population norms. HRQOL population means for adult-onset cancer survivors of all ages and across the survivorship trajectory also have not been published. Methods: Survivors (N = 1,822) and adults with no cancer history (N = 24,804) were identified from the 2010 National Health Interview Survey. The PROMIS® Global Health Scale was used to assess HRQOL. Poor HRQOL was defined as 1 SD or more below the PROMIS® population norm. Results: Poor physical and mental HRQOL were reported by 24.5% and 10.1% of survivors, respectively, compared with 10.2% and 5.9% of adults without cancer (both P < 0.0001). This represents a population of approximately 3.3 million and 1.4 million U.S. survivors with poor physical and mental HRQOL. Adjusted mean mental and physical HRQOL scores were similar for breast, prostate, and melanoma survivors compared with adults without cancer. Survivors of cervical, colorectal, hematologic, short-survival, and other cancers had worse physical HRQOL; cervical and short-survival cancer survivors reported worse mental HRQOL. Conclusion: These data elucidate the burden of cancer diagnosis and treatment among U.S. survivors and can be used to monitor the impact of national efforts to improve survivorship care and outcomes. Impact: We present novel data on the number of U.S. survivors with poor HRQOL. Interventions for high-risk groups that can be easily implemented are needed to improve survivor health at a population level. Cancer Epidemiol Biomarkers Prev; 21(11); 2108–17. ©2012 AACR.

Are survivors who report cancer‐related financial problems more likely to forgo or delay medical care?

Financial problems caused by cancer and its treatment can substantially affect survivors and their families and create barriers to seeking health care.

Conceptual and practical foundations of patient engagement in research at the patient-centered outcomes research institute

PurposeTo provide an overview of PCORI’s approach to engagement in research.MethodsThe Patient-Centered Outcomes Research Institute (PCORI) was established in 2010 to fund patient-centered comparative effectiveness research. Requirements for research funding from PCORI include meaningful engagement of patients and other stakeholders in the research. PCORI’s approach to engagement in research is guided by a conceptual model of patient-centered outcomes research (PCOR), that provides a structure for understanding engagement in research.ResultsTo understand and improve engagement in research PCORI is learning from awardees and other stakeholders. Those efforts are described along with PCORI’s capacity building and guidance to awardees via the Engagement Rubric. PCORI’s unique model of engaging patients and other stakeholders in merit review of funding applications is also described. Additional support for learning about engagement in research is provided through specific research funding and through PCORI’s major infrastructure initiative, PCORnet.ConclusionPCORI requires engagement of stakeholders in the research it funds. In addition PCORI engages stakeholders in activities including review of funding applications and establishment of CER research infrastructure through PCORnet. The comprehensive approach to engagement is being evaluated to help guide the field toward promising practices in research engagement.

Health information needs and health-related quality of life in a diverse population of long-term cancer survivors

OBJECTIVE To investigate health information needs and their association with health-related quality of life (HRQOL) in a diverse, population-based sample of long-term cancer survivors. METHODS We analyzed health information needs from 1197 cancer survivors 4-14 years post-diagnosis drawn from two cancer registries in California. Multivariable regression models were used to identify factors associated with endorsement of total number and different categories of needs. The relationship between number of needs and HRQOL and effect modification by confidence for obtaining information was examined. RESULTS Survivors reported a high prevalence of unmet information needs in the following categories: side effects & symptoms: 75.8%; tests & treatment: 71.5%; health promotion: 64.5%; interpersonal & emotional: 60.2%; insurance: 39.0%; and sexual functioning & fertility: 34.6%. Survivors who were younger, non-White, and did not receive but wanted a written treatment summary reported a higher number of needs. Number of information needs was inversely related to mental well-being, particularly for those with low confidence for obtaining information (P<0.05). CONCLUSION These patterns suggest disparities in access to important health information in long-term survivors and that affect HRQOL. PRACTICE IMPLICATIONS Findings suggest a need for tailored interventions to equip survivors with comprehensive health information and to bolster skills for obtaining information.

Can't see the forest for the care plan: a call to revisit the context of care planning.

In its 2006 report “From Cancer Patient to Cancer Survivor: Lost in Transition,”1 the Institute of Medicine (IOM) provided suggestions for improving transitional and follow-up care for the growing population of cancer survivors. The IOM recommended that all patients completing primary treatment for cancer be provided with a comprehensive treatment summary and follow-up care plan, together referred to as a survivorship care plan (SCP).1,2 The IOM recommended that the SCP be reviewed with the patient during an end-of-treatment consultation, in the hope that use of an SCP and consultation would foster improved care coordination and communication.1 The IOM panel acknowledged the lack of an evidence base for survivorship care planning but concluded that “some elements of care simply make sense—that is, they have strong face validity and can reasonably be assumed to improve care unless and until evidence accumulates to the contrary.”1p5 However, the IOM report went on to call for health services research to assess the impact, cost, and acceptability of SCPs with regard to patients and providers.1

Cancer survivorship research in Europe and the United States: where have we been, where are we going, and what can we learn from each other?

The growing number of cancer survivors worldwide has led to of the emergence of diverse survivorship movements in the United States and Europe. Understanding the evolution of cancer survivorship within the context of different political and health care systems is important for identifying the future steps that need to be taken and collaborations needed to promote research among and enhance the care of those living after cancer. The authors first review the history of survivorship internationally and important related events in both the United States and Europe. Lessons learned from survivorship research are then broadly discussed, followed by examination of the infrastructure needed to sustain and advance this work, including platforms for research, assessment tools, and vehicles for the dissemination of findings. Future perspectives concern the identification of collaborative opportunities for investigators in Europe and the United States to accelerate the pace of survivorship science going forward. Cancer 2013;119(11 suppl):2094‐108.

Use of Survivorship Care Plans in the United States: Associations With Survivorship Care

BACKGROUND Survivorship care plans (SCPs), including a treatment summary and follow-up plan, intend to promote coordination of posttreatment cancer care; yet, little is known about the provision of these documents by oncologists to primary care physicians (PCPs). This study compared self-reported oncologist provision and PCP receipt of treatment summaries and follow-up plans, characterized oncologists who reported consistent provision of these documents to PCPs, and examined associations between PCP receipt of these documents and survivorship care. METHODS A nationally representative sample of medical oncologists (n = 1130) and PCPs (n = 1020) were surveyed regarding follow-up care for breast and colon cancer survivors. All statistical tests were two-sided. Multivariable regression models identified factors associated with oncologist provision of treatment summaries and SCPs to PCPs (always/almost always vs less frequent). RESULTS Nearly half of oncologists reported always/almost always providing treatment summaries, whereas 20.2% reported always/almost always providing SCPs (treatment summary + follow-up plan). Approximately one-third of PCPs indicated always/almost always receiving treatment summaries; 13.4% reported always/almost always receiving SCPs. Oncologists who reported training in late- and long-term effects of cancer and use of electronic medical records were more likely to report SCP provision (P < .05). PCP receipt of SCPs was associated with better PCP-reported care coordination, physician-physician communication, and confidence in survivorship care knowledge compared to receipt of neither treatment summaries nor SCPs (P < .05). CONCLUSIONS Providing SCPs to PCPs may enhance survivorship care coordination, physician-physician communication, and PCP confidence. However, considerable progress will be necessary to achieve implementation of sharing SCPs among oncologists and PCPs.

Stakeholder-Driven Comparative Effectiveness Research An Update From PCORI

The US Congress authorized the Patient-Centered Outcomes Research Institute (PCORI) in 2010 to fund comparative clinical effectiveness research (CER) “to assist patients, clinicians, purchasers, and policy-makers in making informed health decisions.”1 This charge is unique. No other health research funding agency is restricted to funding CER, defined as “comparing health outcomes and the clinical effectiveness, risks, and benefits of 2 or more medical treatments, services....”1 No other funding agency must address the research needs of the entire range of stakeholders in the health care enterprise. To respond to these mandates, PCORI’s board of governors, methodology committee, and staff have built a novel “stakeholder-driven” approach to doing CER. The premise: research is more likely to improve the care of patients if they and other key stakeholders are involved in all aspects of the research. In this Viewpoint, we describe the role of stakeholders in 3 parts of the PCORI research enterprise: developing research questions, reviewing research applications, and conducting research. We also discuss challenges and future directions.

A systematic review of approaches for engaging patients for research on rare diseases

ABSTRACTBACKGROUNDPatients with rare diseases have limited access to useful information to guide treatment decisions. Engagement of patients and other stakeholders in clinical research may help to ensure that research efforts in rare diseases address relevant clinical questions and patient-centered health outcomes. Rare disease organizations may provide an effective means to facilitate patient engagement in research. However, the effectiveness of patient-engagement approaches, particularly for the study of rare diseases, has not been well studied.OBJECTIVESTo synthesize evidence about engagement of patients and other stakeholders in research on rare diseases, including the role of rare disease organizations in facilitating patient-centered research.METHODS/RESEARCH DESIGNA systematic review and gray literature search were guided by a technical expert panel composed of patient representatives, clinicians, and researchers. English-language studies that engaged patients or other stakeholders in research on rare diseases or evaluated engagement were included. Studies were assessed on how well key research questions were answered, based on the level of detail describing engagement activities and whether outcomes from engagement were assessed.RESULTSThirty-five studies were included, although many reported minimal information on engagement. Patients and other stakeholders were most commonly engaged to identify patient-centered research agendas, to select which study outcomes were important to patients, to provide input on study design, and to identify strategies for increasing enrollment in trials. Rare disease organizations mainly helped provide access to patients and communicated research opportunities and findings. They also helped promote collaborative networks and provided financial support for research infrastructures. Although authors reported benefits of engagement and identified changes to their research processes, no empirical assessments of engagement practices and their effectiveness were found.CONCLUSIONSResearchers studying rare diseases can obtain patient input regarding which research questions and health outcomes to study; however, the most effective approaches to engagement have not been well defined.

Lost productivity and burden of illness in cancer survivors with and without other chronic conditions.

Cancer survivors may experience long‐term and late effects from treatment that adversely affect health and limit functioning. Few studies examine lost productivity and disease burden in cancer survivors compared with individuals who have other chronic conditions or by cancer type.