Katherine Treiman

Measuring patient-centered communication in cancer care: A literature review and the development of a systematic approach

Patient-centered communication (PCC) is a critical element of patient-centered care, which the Institute of Medicine (Committee on Quality of Health Care in America, 2001) promulgates as essential to improving healthcare delivery. Consequently, the US National Cancer Institutes Strategic Plan for Leading the Nation (2006) calls for assessing the delivery of PCC in cancer care. However, no comprehensive measure of PCC exists, and stakeholders continue to embrace different conceptualizations and assumptions about how to measure it. Our approach was grounded in the PCC conceptual framework presented in a recent US National Cancer Institute monograph (Epstein & Street, 2007). In this study, we developed a comprehensive inventory of domains and subdomains for PCC by reviewing relevant literature and theories, interviewing a limited number of cancer patients, and consulting experts. The resulting measurement domains are organized under the six core functions specified in the PCC conceptual framework: exchanging information, fostering healing relationships, recognizing and responding to emotions, managing uncertainty, making decisions, and enabling patient self-management. These domains represent a promising platform for operationalizing the complicated PCC construct. Although this study focused specifically on cancer care, the PCC measurements are relevant to other clinical contexts and illnesses, given that patient-centered care is a goal across all healthcare. Finally, we discuss considerations for developing PCC measures for research, quality assessment, and surveillance purposes. United States Department of Health and Human Services, National Institutes of Health, National Cancer Institute (2006). The NCI Strategic Plan for Leading the Nation: To Eliminate the Suffering and Death Due to Cancer. NIH Publication No. 06-5773.

Cancer patients' information needs across the cancer care continuum: evidence from the cancer information service.

ABSTRACT This study examines the information needs of cancer patients who contacted the National Cancer Institutes (NCIs) Cancer Information Service (CIS) via a toll-free telephone number. Records from 19,030 calls received from cancer patients between September 2002 and August 2003 were analyzed to determine differences in subjects of interaction (main topics of inquiry and discussion) for subgroups of patients based on demographic characteristics and stage along the cancer care continuum (pretreatment, in-treatment, post-treatment, recurrence). Females were more likely than males to inquire about cancer screening/diagnosis, support services, psychosocial issues, and general cancer site information, but they were less likely to seek specific cancer treatment information. Older patients were more likely than younger patients to seek specific treatment information, but they were less interested in support services, psychosocial issues, and prevention/risk factors. Compared with White callers, Hispanics and most minorities were more likely to seek support service information, and African Americans were more likely to have questions related to psychosocial issues. Compared with patients in treatment, patients in recurrence were more likely to seek specific treatment information; patients not in treatment were more likely to seek medical referral information; and patients in post-treatment were more likely to seek screening/diagnosis and prevention/risk factor information. Findings will help the CIS and other cancer-focused organizations address the distinct information needs of different subsets of cancer patients.

Implementing and evaluating shared decision making in oncology practice.

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Awareness of the National Cancer Institute's Cancer Information Service: Results from the Health Information National Trends Survey (HINTS)

Established in 1975, the National Cancer Institutes (NCIs) Cancer Information Service (CIS) is a national information and education network that serves the nation by providing the latest scientific cancer information to the American public. The purpose of this study was to determine the publics awareness of the CIS and other national cancer and health organizations by analyzing data from the NCIs Health Information National Trends Survey (HINTS 2003). This study also examined sociodemographic, health, and communication correlates of awareness of CIS and other national health organizations: American Cancer Society (ACS), National Institutes of Health (NIH), and NCI. Results indicated that awareness of the CIS was low (32.8%). Some subgroups were more likely to be aware of the CIS than others. When comparing awareness levels of the four national health organizations, marked differences in patterns of awareness among specific subgroups emerged for many sociodemographic variables. For example, minority groups were significantly more aware of the CIS than Whites; however, for all three other organizations a greater percentage of Whites were aware of each organization. For the NIH, NCI, and ACS, respondents in the highest income group were most aware of each organization and, as income level increased awareness also increased. The CIS, respondents with the lowest income levels, however, were more aware of the CIS compared with middle- and high-income groups. A similar pattern was found for other sociodemographic variables. Results of this study will guide the development of a targeted promotional campaign for the CIS.

Health information styles among participants in a prostate cancer screening informed decision-making intervention

The purpose of this study was to assess the usefulness of a health information styles segmentation strategy in understanding audience subgroups. We examined the health information styles of men participating in a prostate cancer screening informed decision-making (IDM) intervention and assessed intervention effects on men with distinct health information styles. We classified participants into three health information style groups based on their independence in health decision making (independent versus doctor dependent) and engagement in health enhancement (active versus passive): independent active (IA), doctor-dependent active (DDA) and passive. We developed profiles of men in these groups: IAs tended to be white and more highly educated and to have greater baseline prostate cancer knowledge; DDAs were older, less healthy and more likely to have visited a doctor in the past year and passives tended to be younger, not to have had a recent prostate-specific antigen test and to have lower self-efficacy related to communication with doctors and less positive interactions with doctors. All groups significantly increased their prostate cancer knowledge after the intervention, but passives exhibited the greatest increase in knowledge at a 6-month follow-up. The health information styles segmentation strategy used in this study offers a viable framework for segmenting audiences.

Cancer Survivors' Use of Fertility Preservation

BACKGROUNDnSome cancer diagnoses and treatments can place patients at risk for infertility. The American Society of Clinical Oncology recommends that health care providers address the possibility of infertility with cancer patients who are treated during their reproductive years; however, research suggests that many providers do not disclose the risk of infertility to their patients. This study examines adolescent/young adult (AYA) cancer survivors use of and costs for fertility preservation (FP) over time.nnnMETHODSnThe study included 550 AYA cancer survivors diagnosed at the ages of 15 and 39 years between 2006 and 2012. Logistic regression analyses and chi-squared tests were conducted to identify factors associated with FP use, barriers, and expenses.nnnRESULTSnOne hundred eighty two (33%) of the AYA survivors took steps to preserve their fertility. Men, survivors who did not have children, those who received chemotherapy, and those who lived in the Northeast (vs. the South) were more likely to have FP. The majority of men using FP used sperm banking (99%), whereas women used egg preservation (40%), embryo preservation (40%), and other methods (37%). On average, women paid more for FP than men (pu2009<u20090.001); however, costs for women significantly declined over time (pu2009=u20090.021).nnnCONCLUSIONSnThe study points to other areas for research in womens health, including the development of educational interventions with patients and providers to reduce gender disparities in FP and ensure timely patient-provider discussions related to fertility issues.

The rationale for patient‐reported outcomes surveillance in cancer and a reproducible method for achieving it

Patient‐reported outcomes (PROs) measure quality of life, symptoms, patient functioning, and patient perceptions of care; they are essential for gaining a full understanding of cancer care and the impact of cancer on peoples lives. Repeatedly captured facility‐level and/or population‐level PROs (PRO surveillance) could play an important role in quality monitoring and improvement, benchmarking, advocacy, policy making, and research. This article describes the rationale for PRO surveillance and the methods of the Patient Reported Outcomes Symptoms and Side Effects Study (PROSSES), which is the first PRO study to use the American College of Surgeons Commission on Cancers Rapid Quality Reporting System to identify patients and manage study data flow. The American Cancer Society, the National Cancer Institute, the Commission on Cancer, and RTI International collaborated on PROSSES. PROSSES was conducted at 17 cancer programs that participated in the National Cancer Institute Community Cancer Centers Program among patients diagnosed with locoregional breast or colon cancer. The methods piloted in PROSSES were successful as demonstrated by high eligibility (93%) and response (61%) rates. Differences in clinical and demographic characteristics between respondents and nonrespondents were mostly negligible, with the exception that non‐white individuals were somewhat less likely to respond. These methods were consistent across cancer centers and reproducible over time. If repeated and expanded, they could provide PRO surveillance data from patients with cancer on a national scale. Cancer 2016;122:344–351.

Translating Medical Evidence to Promote Informed Health Care Decisions

OBJECTIVEnTo examine the effects of a community-based intervention on decisions about prostate-specific antigen (PSA) screening using multiple measures of informed decision making (IDM).nnnDATA SOURCES/STUDY SETTINGnNonequivalent control group time series design collecting primary data in late 2004 and 2005.nnnSTUDY DESIGNnWe developed a multimodal intervention designed to convey the medical uncertainty about the benefits of PSA screening and early treatment and the limited predictive ability of both the PSA test and pathological specimens collected from prostate biopsy. We examined (1) patients recognition that there is a decision to be made about PSA screening, (2) prostate cancer knowledge levels, (3) their preferred and actual levels of participation in decision making about screening at three points in time, and (4) screening decision.nnnDATA COLLECTIONnBaseline data collection occurred in community-based organizations. These organizations served as recruiting sources and as sites for the intervention. We collected follow-up data by mail with telephone reminders.nnnPRINCIPAL FINDINGSnOur intervention was associated with greater recognition of the PSA test as a decision to be made, levels of knowledge, both preferred and actual levels of involvement in decision making, but did not have an impact on the screening decision.nnnCONCLUSIONSnCommunity-based interventions can influence key measures of IDM about PSA screening.

Feasibility and acceptability of a computer-based tool to improve contraceptive counseling

OBJECTIVEnThe objective was to test the feasibility and acceptability of a computerized tool, Smart Choices, designed to enhance the quality of contraceptive counseling in family planning clinics. The tool includes (a) a questionnaire completed by patients and summarized in a printout for providers and (b) a birth control guide patients explore to learn about various contraceptive methods.nnnSTUDY DESIGNnIn 2 family planning clinics, we conducted interviews with 125 women who used the Smart Choices computerized tool and 7 providers.nnnRESULTSnSmart Choices integrated into clinic flow well in one clinic, but less well in the other, which had very short waiting times. Patients were generally enthusiastic about Smart Choices, including its helpfulness in preparing them and their providers for the counseling session and increasing their knowledge of contraceptive methods. Providers varied in how much they used the printout and in their opinions about its usefulness. Some felt its usefulness was limited because it overlapped with the clinics intake forms or because it did not match with their concept of counseling needs. Others felt it provided valuable information not collected by intake forms and more honest information. Some found Smart Choices to be most helpful with patients who were unsure what method they wanted.nnnCONCLUSIONSnSmart Choices is feasible to implement and well received by patients, but modifications are needed to increase provider enthusiasm for this tool.nnnIMPLICATIONSnThe Smart Choices tool requires refinement before widespread dissemination.

Engaging patient advocates and other stakeholders to design measures of patient-centered communication in cancer care

BackgroundPatient-centered communication (PCC) is an essential component of patient-centered care and contributes to patient satisfaction, health-related quality of life, and other important patient outcomes.ObjectiveThe aim of this study was to develop and test survey questions to assess patients’ experiences with PCC in cancer care.MethodsWe used a conceptual model developed by the National Cancer Institute as our framework. The survey questions align with the six core functions of PCC defined in the model: Exchanging Information, Managing Uncertainty, Enabling Patient Self-Management, Fostering Healing Relationships, Making Decisions, and Responding to Emotions. The study focused on colorectal cancer patients. We conducted two rounds of cognitive interviewing to evaluate patients’ ability to understand and provide valid answers to the PCC questions. Interviews were conducted in Maryland and North Carolina in 2014. We involved a patient advocacy group, Fight Colorectal Cancer, and a multidisciplinary panel of stakeholders throughout the measurement development process to ensure that the survey questions capture aspects of PCC that are important to patients and meet the needs of potential end users, including researchers, healthcare organizations, and health professionals.ResultsPatient and other stakeholder input informed revisions of draft survey questions, including changes to survey instructions, frame of reference for questions, response scales, and language.ConclusionThis study demonstrated the feasibility and value of engaging patients and other stakeholders in a measurement development study. The Patient-Centered Outcomes Research Institute (PCORI) conceptual model of patient-centered outcomes research provides a useful guide for patient engagement in research. Research funders should call for meaningful roles for patients and other stakeholders in health research, including in the development of patient-centered outcomes.