Implementing patient navigation programs: Considerations and lessons learned from the Alliance to Advance Patient-Centered Cancer Care.

BACKGROUND: Six multidisciplinary cancer centers were selected and funded by the Merck Foundation (2017-2021) to collaborate in the Alliance to Advance Patient-Centered Cancer Care ("Alliance"), an initiative to improve patient access, minimize health disparities, and enhance the quality of patient-centered cancer care. These sites share their insights on implementation and expansion of their patient navigation efforts. METHODS: Patient navigation represents an evidence-based health care intervention designed to enhance patient-centered care and care coordination. Investigators at 6 National Cancer Institute-designated cancer centers outline their approaches to reducing health care disparities and synthesize their efforts to ensure sustainability and successful transferability in the management of patients with cancer and their families in real-world health care settings. RESULTS: Insights are outlined within the context of patient navigation program effectiveness and supported by examples from Alliance cancer center sites: 1) understand the patient populations, particularly underserved and high-risk patients; 2) capitalize on the existing infrastructure and institutional commitment to support and sustain patient navigation; and 3) build capacity by mobilizing community support outside of the cancer center. CONCLUSIONS: This process-level article reflects the importance of collaboration and the usefulness of partnering with other cancer centers to share interdisciplinary insights while undergoing intervention development, implementation, and expansion. These collective insights may be useful to staff at other cancer centers that look to implement, enhance, or evaluate the effectiveness of their patient navigation interventions.

Maryland dentists' perceptions and attitudes toward dental therapy.

OBJECTIVES: To learn dentists' perceptions, attitudes, and concerns about the problems of access to oral health care for low income and rural Marylanders and to ascertain whether the dentists believe dental therapy is a viable solution. METHODS: We conducted three focus group discussions of 27 dentists during August and September 2018 in three locations in urban and rural areas of Maryland. RESULTS: Focus group participants felt that problems with access to dental care for low income and rural Marylander were not due to a shortage of dental providers. They believed there are more than enough dentists in the state. Access problems in Maryland are due in large part to inadequate insurance coverage and low oral health literacy. With the exception of one participant, the dentists would not use dental therapists in their practices to expand access. CONCLUSIONS: Maryland dentists in our focus group strongly oppose the use of dental therapists to address the state's unmet oral health care needs. Any effort to expand the state's dental workforce using dental therapists must address Maryland dentists' concerns and opinions.

Potential Role of Cost and Quality of Life in Treatment Decisions for Arthritis-Related Knee Pain in African American and Latina Women.

OBJECTIVE: The present study was undertaken to investigate whether Latina and African American women with arthritis-related knee pain and primary care providers who treat them believe their treatment decisions would benefit from having more information about the impact of treatment on their quality of life, medical care costs, and work productivity. METHODS: We conducted 4 focus groups of Latina and African American women over age 45 years who had knee pain. We also conducted 2 focus groups with primary care providers who treated Latina and African American women for knee pain. The participants were recruited from the community. They were asked their opinions about a decision tool that presented information on a range of treatment options and their impacts on quality of life, medical care costs, and work productivity. They were asked whether providing this information would help them make better treatment decisions. We analyzed the focus group transcripts using ATLAS.ti. RESULTS: We found that minority women and primary care providers endorsed the use of a decision-making tool that provided information of the impact of treatment on quality of life, medical care costs, and work productivity. Providers felt that patients would benefit from having the additional information but were concerned about its complexity and some patients' ability to comprehend the information. CONCLUSION: Latina and African American women could make more informed treatment decisions for their knee pain using a decision-making tool that provides them with significant information about how various treatment options may impact their quality of life, medical care costs, and workforce productivity.

In proportion: approaches for displaying patient-reported outcome research study results as percentages responding to treatment.

PURPOSE: Patient-reported outcome (PRO) data from clinical trials can promote valuable patient-clinician communication and aid the decision-making process regarding treatment options. Despite these benefits, both patients and doctors face challenges in interpreting PRO scores. The purpose of this study was to identify best practices for presenting PRO results expressed as proportions of patients with changes from baseline (improved/stable/worsened) for use in patient educational materials and decision aids. METHODS: We electronically surveyed adult cancer patients/survivors, oncology clinicians, and PRO researchers, and conducted one-on-one cognitive interviews with patients/survivors and clinicians. Participants saw clinical trial data comparing two treatments as proportions changed using three different formats: pie charts, bar graphs, icon arrays. Interpretation accuracy, clarity, and format preference were analyzed quantitatively and online survey comments and interviews, qualitatively. RESULTS: The internet sample included 629 patients, 139 clinicians, and 249 researchers; 10 patients and 5 clinicians completed interviews. Bar graphs were less accurately interpreted than pie charts (OR 0.39; p < .0001) and icon arrays (OR 0.47; p < .0001). Bar graphs and icon arrays were less likely to be rated clear than pie charts (OR 0.37 and OR 0.18; both p < .0001). Qualitative data informed interpretation of these findings. CONCLUSIONS: For communicating PROs as proportions changed in patient educational materials and decision aids, these results support the use of pie charts.

Picture This: Presenting Longitudinal Patient-Reported Outcome Research Study Results to Patients.

BACKGROUND: Patient-reported outcome (PRO) results from clinical trials and research studies can inform patient-clinician decision making. However, data presentation issues specific to PROs, such as scaling directionality (higher scores may represent better or worse outcomes) and scoring strategies (normed v. nonnormed scores), can make the interpretation of PRO scores uniquely challenging. OBJECTIVE: To identify the association of PRO score directionality, score norming, and other factors on a) how accurately PRO scores are interpreted and b) how clearly they are rated by patients, clinicians, and PRO researchers. METHODS: We electronically surveyed adult cancer patients/survivors, oncology clinicians, and PRO researchers and conducted one-on-one cognitive interviews with patients/survivors and clinicians. Participants were randomized to 1 of 3 line graph formats showing longitudinal change: higher scores indicating "better," "more" (better for function, worse for symptoms), or "normed" to a population average. Quantitative data evaluated interpretation accuracy and clarity. Online survey comments and cognitive interviews were analyzed qualitatively. RESULTS: The Internet sample included 629 patients, 139 clinicians, and 249 researchers; 10 patients and 5 clinicians completed cognitive interviews. "Normed" line graphs were less accurately interpreted than "more" (odds ratio [OR] = 0.76; P = 0.04). "Better" line graphs were more accurately interpreted than both "more" (OR = 1.43; P = 0.01) and "normed" (OR = 1.88; P = 0.04). "Better" line graphs were more likely to be rated clear than "more" (OR = 1.51; P = 0.05). Qualitative data informed interpretation of these findings. LIMITATIONS: The survey relied on the online platforms used for distribution and consequent snowball sampling. We do not have information regarding participants' numeracy/graph literacy. CONCLUSIONS: For communicating PROs as line graphs in patient educational materials and decision aids, these results support using graphs, with higher scores consistently indicating better outcomes.

Presenting comparative study PRO results to clinicians and researchers: beyond the eye of the beholder.

PURPOSE: Patient-reported outcome (PRO) results from clinical trials can inform clinical care, but PRO interpretation is challenging. We evaluated the interpretation accuracy and perceived clarity of various strategies for displaying clinical trial PRO findings. METHODS: We conducted an e-survey of oncology clinicians and PRO researchers (supplemented by one-on-one clinician interviews) that randomized respondents to view one of the three line-graph formats (average scores over time for two treatments on four domains): (1) higher scores consistently indicating "better" patient status; (2) higher scores indicating "more" of what was being measured (better for function, worse for symptoms); or (3) normed scores. Two formats displayed proportions changed (pie/bar charts). Multivariate modeling was used to analyze interpretation accuracy and clarity ratings. RESULTS: Two hundred and thirty-three clinicians and 248 researchers responded; ten clinicians were interviewed. Line graphs with "better" directionality were more likely to be interpreted accurately than "normed" line graphs (OR 1.55; 95% CI 1.01-2.38; p = 0.04). No significant differences were found between "better" and "more" formats. "Better" formatted graphs were also more likely to be rated "very clear" versus "normed" formatted graphs (OR 1.91; 95% CI 1.44-2.54; p < 0.001). For proportions changed, respondents were less likely to make an interpretation error with pie versus bar charts (OR 0.35; 95% CI 0.2-0.6; p < 0.001); clarity ratings did not differ between formats. Qualitative findings informed the interpretation of the survey findings. CONCLUSIONS: Graphic formats for presenting PRO data differ in how accurately they are interpreted and how clear they are perceived to be. These findings will inform the development of best practices for optimally reporting PRO findings.

A qualitative exploration of the experiences, needs, and roles of caregivers during and after cancer treatment: "That's what I say. I'm a relative survivor".

PURPOSE: The transition out of acute cancer treatment has been identified as a time of stress and uncertainty for cancer survivors, but little is known about how caregivers fare during this period. In this paper, we discuss caregiving work up to and including transition from initial care and the needs of caregivers during transition and beyond. METHODS: We held four focus groups with breast, prostate, and colorectal cancer survivors who had completed treatment with intent to cure and two with caregivers for the same population. Participants were affiliated with either an urban academic or rural community cancer center. The discussions focused on cancer-related experiences and needs during the transition out of acute cancer care. RESULTS: Focus groups included 47 people: 28 survivors and 19 caregivers. Three key caregiving themes identified the significance of support for the patient in the clinic, support for the patient in the home, and for caregiver self-care. CONCLUSIONS: Discussions revealed aspects of caregiving that created difficulties for the caregiver themselves or between the caregiver and the cancer survivor. Caregiver experiences and needs may warrant explicit attention as survivors and caregivers are adjusting to a "new normal" that is no longer centered on getting through treatment. IMPLICATIONS FOR CANCER SURVIVORS: Patients and informal caregivers are often conceptualized as a "unit of care"; consideration of the needs of both is important for the provision of appropriate and effective health services.

What do these scores mean? Presenting patient-reported outcomes data to patients and clinicians to improve interpretability.

BACKGROUND: Patient-reported outcomes (PROs) (eg, symptoms, functioning) can inform patient management. However, patients and clinicians often have difficulty interpreting score meaning. The authors tested approaches for presenting PRO data to improve interpretability. METHODS: This mixed-methods study included an Internet survey of cancer patients/survivors, oncology clinicians, and PRO researchers circulated via snowball sampling, plus individual in-person interviews. Clinical importance was conveyed using 3 approaches (presented in random order): normal score range shaded green, concerning scores circled in red, and red threshold lines indicating normal versus concerning scores. Versions also tested 2 approaches to score directionality: higher = more (better for function, worse for symptoms) and higher = better for both function and symptoms. Qualitative data from online comments and in-person interviews supplemented quantitative results on interpretation accuracy, clarity, and the "most useful" format. RESULTS: The survey included 1113 respondents: 627 survivors, 236 clinicians, and 250 researchers, plus 10 patients and 10 clinicians who were purposively sampled interviewees. Interpretation accuracy ranged from 53% to 100%. The formats in which higher = better were interpreted more accurately versus those in which higher = more (odds ratio [OR], 1.30; 95% confidence interval [CI], 1.07-1.58) and were more likely to be rated "very"/"somewhat" clear (OR, 1.39; 95% CI, 1.13-1.70) and "very" clear (OR, 1.36; 95% CI, 1.18-1.58). Red circle formats were interpreted more accurately than green-shaded formats when the first format presented (OR, 1.29; 95% CI, 1.00-1.65). Threshold-line formats were more likely to be rated "very" clear than green-shaded (OR, 1.43; 95% CI, 1.19-1.71) and red-circled (OR, 1.22, 95% CI, 1.02-1.46) formats. Threshold lines were most often selected as "most useful." CONCLUSIONS: The current results support presenting PRO data with higher = better directionality and threshold lines indicating normal versus concerning scores. Cancer 2017;123:1848-1859. © 2017 The Authors. Cancer published byWiley Periodicals, Inc. on behalf of American Cancer Society. This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations aremade.

Engaging stakeholders to improve presentation of patient-reported outcomes data in clinical practice.

PURPOSE: Patient-reported outcomes (PROs) can promote patient-centered care, but previous research has documented interpretation challenges among clinicians and patients. We engaged stakeholders to improve formats for presenting individual-level PRO data (for patient monitoring) and group-level PRO data (for reporting comparative clinical studies). METHODS: In an iterative process, investigators partnered with stakeholder workgroups of clinicians and patients to address previously identified interpretation challenges. Candidate approaches were then tested in semi-structured, one-on-one interviews with cancer patients and clinicians. Interpretation issues addressed included conveying score meaning (i.e., what is good/bad) and directional inconsistency (whether higher scores are better/worse). An additional issue for individual-level PROs was highlighting potentially concerning scores and, for group-level PROs, identifying important between-group differences (clinical, statistical). RESULTS: One-on-one interviews in a purposive sample of clinicians (n = 40) and patients (n = 39) provided insights regarding approaches to address issues identified. For example, adding descriptive labels to the Y-axis (none, mild, moderate, severe) helps address directional inconsistency and aids interpretation of score meaning. Red circles around concerning data points or a threshold line indicating worse-than-normal scores indicate possibly concerning scores for individual-level PRO data. For group-level PRO data, patients and some clinicians are confused by confidence limits and clinical versus statistical significance, but almost all clinicians want p values displayed. CONCLUSIONS: Variations in interpretation accuracy demonstrate the importance of presenting PRO data in ways that promote understanding and use. In an iterative stakeholder-driven process, we developed improved PRO data presentation formats, which will be evaluated in further research across a large population of patients and clinicians.

Comparing Web-Based Provider-Initiated and Patient-Initiated Survivorship Care Planning for Cancer Patients: A Randomized Controlled Trial.

BACKGROUND: Survivorship care plans (SCPs) are intended to facilitate communication and coordination between patients, oncologists, and primary care providers. Most SCP initiatives have focused on oncology providers initiating the SCP process, but time and resource barriers have limited uptake. OBJECTIVE: This trial compares the feasibility and value of 2 Web-based SCP tools: provider-initiated versus patient-initiated. METHODS: This mixed-methods study recruited clinicians from 2 academically-affiliated community oncology practices. Eligible patients were treated by a participating oncologist, had nonmetastatic cancer, completed acute treatment ≤ 2 months before enrollment, and had no evidence of disease. Patients were randomized 1:1 to either provider-initiated or patient-initiated SCPs-both are Web-based tools. We conducted qualitative interviews with providers at baseline and follow-up and with patients 2 months after enrollment. In addition, patients were administered the Preparing for Life as a (New) Survivor (PLANS) and Cancer Survivors' Unmet Needs (CaSUN) surveys at baseline and 2 months. RESULTS: A total of 40 providers were approached for the study, of whom 13 (33%) enrolled. Providers or clinic staff required researcher assistance to identify eligible patients; 41 patients were randomized, of whom 25 completed follow-up (61%; 13 provider-initiated, 12 patient-initiated). Of the 25, 11 (44%) had initiated the SCP; 5 (20%) provided the SCP to their primary care provider. On the Preparing for Life as a (New) Survivor and Cancer Survivors' Unmet Needs, patients in both arms tended to report high knowledge and confidence and few unmet needs. In qualitative interviews, providers and patients discussed SCPs' value. CONCLUSIONS: Regardless of patient- versus provider-initiated templates and the Web-based design of these tools, barriers to survivorship care planning persist. Further efforts should emphasize workflow functions for identifying and completing SCPs-regardless of the SCP form used. TRIAL REGISTRATION: ClinicalTrials.gov NCT02405819; https://clinicaltrials.gov/ct2/show/NCT02405819 (Archived by WebCite at http://www.webcitation.org/6jWqcWOvK).