Patient Portals to Elicit Essential Patient-Reported Elements of Communication Supporting Person-Centered Oncologic Care: A Pilot Study of the PERSON Approach.

PURPOSE: Patient portal technology offers important new opportunities to support person-centered clinician-patient communication. METHODS: Questionnaires relating to understanding of illness and treatment intent were sent quarterly via portal to all patients scheduled for follow-up in GI medical oncology clinics. For patients in selected clinics, items eliciting health-related values were added. Patient responses were available to all oncology team members in the electronic health record. Workflow and content of clinician-patient discussions about illness, treatment, and care goals stayed within clinicians' discretion. Feasibility (patient response rate), patient understanding, acceptability (three-item patient questionnaire), and efficacy (quality of clinician communication) were evaluated. RESULTS: From May 2021 through December 2022, a total of 12,233 questionnaires about illness/treatment understanding were sent to 6,325 patients (one to six per patient), with 97% response, including 9,358 with both open- and closed-ended responses. Fewer than 0.1% of patients indicated distress related to the questionnaire/process. Open-ended responses complemented closed-ended answers by revealing prognostic awareness and illness concerns. Of 48 patients approached to complete the full questionnaire including values items via portal, 15 first received and completed them in clinic (5 on iPad, 10 on paper), while 33 received and 27 (82%) completed the portal questionnaire. Patients found the portal process acceptable, and ratings of clinician communication were higher after clinic visits informed by patients' questionnaire responses (average prescore 6.8 v 5.9 post; P = .03). CONCLUSION: Almost all patients in this large GI cancer cohort responded via the portal about their understanding of illness and treatment goals. Eliciting their personal values by portal was also feasible, accepted by patients, and improved patient ratings of clinicians' communication. Portals represent a promising tool for scaling assessment of essential patient-reported elements of person-centered communication.

Age-related differences in the severity of sexual dysfunction symptoms and psychological distress in individuals with multiple sclerosis.

BACKGROUND: Sexual dysfunction (SD) is a common symptom for many with multiple sclerosis (MS). However, SD research in general appears to often overlook young adults within their samples, which can be a major issue for better understanding and treatment for the MS population. Few studies have compared age-related differences in distress in response to physical disability. Research has also found that many people diagnosed with MS do not discuss any SD struggles with their providers. The present study hopes to see whether age-related differences exist in the reporting of the levels of primary, secondary, and tertiary SD, as defined by subscale scores of the Multiple Sclerosis Intimacy and Sexuality Questionnaire-19 (MSISQ-19), and amount of distress, as defined by the 12-Item Short Form Health Survey (SF-12)'s Mental Component Summary (MCS-12). Additionally, we hope to determine if there are any age-related or sex-related differences in help-seeking behaviors for SD. METHODS: Study participants were recruited from the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry. Participants completed the MSISQ-19, SF-12, and Patient Determined Disease Steps (PDDS), provided demographic information, and responded if they received medical or psychological treatment for SD. Study participants were 5815 respondents (Mage = 51 years, SD = 9.63, 75 % female, 30 % having attained a high school diploma, 35 % scoring "advanced disability" on the PDDS). Young adult (19-39 years), middle adult (40-64 years), and mature adult (65-older) were compared on SD. RESULTS: Linear mixed effects modeling revealed that the MSISQ-19 subscale scores were significantly predicted by secondary SD (t = 2.48, p < .13). Young adult participants had the lowest primary SD (M = 13.87, 95 % CI [13.13, 14.61]) when compared to mature adult (M = 14.12, 95 % CI [13.27, 14.97]) and middle adult participants (M = 14.44, 95 % CI [14.21, 14.66]), though none were statistically significant. Mature adults had the lowest secondary SD (M = 16.50, 95 % CI [15.65, 17.35]), a statistically significant difference from the middle adults (M = 18.20, 95 % CI [17.97, 18.42]) and young adults (M = 18.91, 95 % CI [18.17, 19.65]). Mature adults had the lowest tertiary symptoms (M = 10.12, 95 % CI [9.27, 10.96]), followed by young adults (M = 12.23, 95 % CI [11.48, 12.97]), and middle adults (M = 11.65, 95 % CI [11.43, 11.88]), though none were statistically significant. Hierarchical multiple regressions found that age had the most significant impact on SD. When SF-12 MCS-12 was added, linear mixed effects did not reveal any statistically significant results between the age groups and SD levels. In contrast, hierarchical multiple regressions found that SF-12 MCS-12 scores had the most significant impact on SD. There were significant age-related and sex-related differences in help-seeking behaviors in those who sought psychological counseling as opposed to medical treatment for SD. CONCLUSION: Our study has highlighted the importance of clinicians assessing for SD and psychological distress within their patients and to consider potential differences in symptom presentations of age groups to better address their unique needs.

Accuracy of curability expectations in patients with gastrointestinal cancers.

BACKGROUND: Assessment of illness and treatment understanding among cancer patients has largely focused on those with advanced disease. Less is known about patient expectations at earlier stages of cancer and potential modifiers of accurate understanding. METHODS: We assessed accuracy of cure expectations in patients across all stages with gastrointestinal (GI) cancers. Accuracy was determined by independent reviews of patient health records by oncologists on the investigative team. Impact on cure accuracy of selected clinical variables and health-information preferences was analyzed. RESULTS: Hundred and thirty five patients were included for analysis, with 100% interrater agreement for accuracy between oncologist reviewers. Sixety five patients (48%) had accurate cure expectations from their cancer treatment. Accuracy was lower in Stage IV versus Stage I-III disease (35% vs. 63%, p < 0.01), lower in unresectable versus resectable disease (35% vs. 67%, p < 0.01), and higher in patients with early-stage disease who received adjuvant chemotherapy versus those who did not (78% vs. 53%, p = 0.04). Accuracy did not differ by health-information preferences and remained stable over time. Of 63 patients who died, baseline accuracy differed by location of death (p = 0.03), with greater accuracy in those who died with home hospice (56%). Accuracy was lower in those who were hospitalized in the last 30 days of life versus those who were not (25% vs. 59%, p = 0.01). CONCLUSIONS: Inaccurate cure expectations are prevalent across all stages of GI cancers, but particularly among those with metastatic or unresectable disease. High-quality, iterative communication strategies may facilitate patient illness and treatment understanding throughout the disease course.

Navigating a newly diagnosed cancer through clinician-facilitated discussions of health-related patient values: a qualitative analysis.

BACKGROUND: Advance care planning, the process through which patient values and goals are explored and documented, is a core quality indicator in cancer care. However, patient values are predominantly elicited at the end of life; patient values earlier in serious illness are not clearly delineated. The objective of this analysis is to assess the content of patient-verified summaries of health-related values among newly diagnosed cancer outpatients in order to develop a theoretical framework to guide future values discussions and optimize person-centered oncologic care. METHODS: Values summaries among patients with gastrointestinal (GI) cancers or myelodysplastic syndrome (MDS) were extracted from the medical record. Modified grounded theory analysis included interdisciplinary team coding of values summaries to identify key domains; code categorization; and identification of thematic constructs during successive consensus meetings. A final round of coding stratified themes by disease type. RESULTS: Analysis of 128 patient values summary documents from 67 patients (gastrointestinal [GI] cancers, n = 49; myelodysplastic syndrome [MDS], n = 18) generated 115 codes across 12 categories. Resultant themes demonstrated patients' focus on retaining agency, personhood and interpersonal connection amidst practical and existential disruption caused by cancer. Themes coalesced into a theoretical framework with 5 sequenced constructs beginning with the cancer diagnosis, leading to 3 nesting constructs of individual identity (character), interpersonal (communication) preferences and needs, and social identity (connection), signifying sources of meaning and fulfillment. Values differences between GI cancer and MDS patients-including greater focus on normalcy, prognosis, and maintaining professional life among GI patients-reflected the distinct therapeutic options and prognoses across these disease groups. CONCLUSIONS: Patient values reflect goals of meaning-making and fulfillment through individual agency and interpersonal supports in the setting of a newly diagnosed cancer. Early, nurse-led values discussions provide important and patient-specific data that are informative and likely actionable by clinicians in the delivery of person-centered care. Values can also facilitate discussions between patients and families and clarify patient preferences.

The Hardest Weeks of My Life: A Qualitative Study of Experiences, Practice Changes, and Emotional Burden of New York City Oncology Physicians During the COVID-19 Surge in 2020.

PURPOSE: The COVID-19 pandemic surge in New York City in Spring 2020 resulted in an unprecedented constraint on health care resources. This study aimed to explore the experiences of doctors providing care to oncology patients during this time. METHODS: Hospitalists and medical oncologists from two large inpatient services at a dedicated cancer center participated in virtual in-depth interviews exploring how the pandemic affected their practice and to what extent it may have affected decisions for urgent evaluation or hospital admission, interventions, or goals-of-care discussions. Interviews also explored how the pandemic affected each individual physician's psychologic well-being. Transcripts were analyzed by three independent coders in Atlas.ti v. 7.5, using a thematic analysis approach. RESULTS: Eighteen physicians were interviewed (n = 6 GI medical oncologists, n = 6 gynecologic medical oncologists, and n = 6 hospitalists). Analysis identified five major themes related to fear and distress: (1) perceived patient fears of the hospital during COVID-19, leading to avoidance and delay of acute care needs before admission, (2) physicians' fear and distress delivering oncology care during COVID-19, (3) physician distress resulting from ambiguity in decision making, (4) distress and anxiety balancing the need for patient contact with the need to minimize infection risk, and (5) distress regarding impact of uncertainty and acuity of COVID-19 on goals-of-care discussions. CONCLUSION: Insight into the experiences of physicians providing cancer care during a COVID-19 surge underscores the need for strategies mitigate short-term distress and long-term psychologic impacts. Findings can also inform practitioner training and preparedness for future pandemics in the oncology setting.

A mixed methods analysis of patients' advance care planning values in outpatient oncology: Person-Centered Oncologic Care and Choices (P-COCC).

PURPOSE: Person-Centered Oncologic Care and Choices (P-COCC) combines an advance care planning (ACP) value-focused patient interview with a care goal video decision aid. Our randomized study showed that P-COCC was acceptable but increased participant distress, compared with video-alone and usual care study arms. This mixed methods approach explores the ACP values in the P-COCC arm and their relationship to the distress phenomenon. METHODS: Qualitative thematic analysis of the 46 audio-recorded P-COCC interview transcripts with advanced gastrointestinal cancer patients was performed by multiple reviewers. Quantitative (Likert scale) changes in ACP values were compared across study arms. ACP themes and value change were analyzed in participants with increased distress. RESULTS: Transcript analysis resulted in thematic saturation and identified eight distinct themes on ACP values relating to end-of-life wishes, communication needs, and psychosocial supports. Of 98 participants (33 P-COCC, 43 videos, 22 usual care) who completed the change in value measure, there was no difference detected with P-COCC compared with either video (p = 0.052) or usual care (p = 0.105) arms alone, but P-COCC led to a frequency distribution of more change in personal values compared with the other study arms combined (p = 0.043). Among the subset of P-COCC participants with increased distress, there was no statistical relationship with change in values. CONCLUSIONS: The ACP paradigm P-COCC both informs and supports patients in individualized, value-based decision-making. Distress is not associated with changes in ACP values and may be a necessary, at least transient, byproduct of discussing sensitive but pertinent topics about end-of-life medical care.

Stakeholders' Perceptions and Information Needs Regarding Research Medical Donation.

CONTEXT: Research Medical Donation (RMD), which entails collecting human tissue within hours after death, benefits cancer research but data are limited regarding barriers institutions face accruing patients to RMD programs. OBJECTIVES: The objective of this study was to generate stakeholder perspectives to best inform the complex RMD process, which includes communicating with patients and their proxies and procuring tissue in a timely manner, all the while respecting end-of-life care sensitivities. METHODS: We explored perceived core needs and challenges of RMD by engaging stakeholders (cancer clinicians, patients, and their caregivers) in eight teleconference focus groups. Breast, pancreatic, and lung cancer clinicians comprised two groups. Each cancer separately had two groups for patients and their caregivers combined. Qualitative analysis of focus group transcripts included identifying and reaching group consensus on transcript themes and establishing agreement on consensus templates to identify primary common and divergent themes. RESULTS: A total of 45 people (13 clinicians, 24 patients, eight caregivers) participated in the groups. The themes identified were as follows: 1) clinicians and patients had limited previous knowledge about RMD; 2) RMD was perceived to mainly benefit research; 3) logistical and privacy questions arose; 4) introducing RMD was deemed sensitive, with patient-specific timing; 5) rare and/or virulent cancers appeared associated with willingness to participate in RMD. CONCLUSION: Patients, families, and cancer clinicians have generally low knowledge of RMD but, upon learning about it, deem it valuable for scientific advancement (particularly for rare and virulent cancers), necessary to be carried out with individualized sensitivity to end-of-life issues, and through training programs with involved clinical staff.

Giving Voice to Patient Values Throughout Cancer: A Novel Nurse-Led Intervention.

CONTEXT: Optimal advance care planning allows patients to articulate their values as a touchstone for medical decision making. Ideally, this occurs when patients are clinically stable, and with opportunities for iteration as the clinical situation unfolds. OBJECTIVES: Testing feasibility and acceptability in busy outpatient oncology clinics of a novel program of systematic, oncology nurse-led values discussions with all new cancer patients. METHODS: Within an institutional initiative integrating primary and specialist palliative care from diagnosis for all cancer patients, oncology nurses were trained to use specific questions and an empathic communication framework to discuss health-related values during outpatient clinic visits. Nurses summarized discussions on a template for patient verification, oncologist review, and electronic medical record documentation. Summaries were reviewed with the patient at least quarterly. Feasibility and acceptability were evaluated in three clinics for patients with hematologic or gastrointestinal malignancies. RESULTS: Oncology nurses conducted 177 total discussions with 67 newly diagnosed cancer patients (17 with hematologic and 50 with gastrointestinal malignancies) over two years. No patient declined participation. Discussions averaged eight minutes, and all patients verified values summaries. Clinic patient volume was maintained. Of 31 patients surveyed, 30 (97%) reported feeling comfortable with the process, considered it helpful, and would recommend it to others. Clinicians strongly endorsed the values discussion process. CONCLUSION: Nurse-led discussions of patient values soon after diagnosis are feasible and acceptable in busy oncology clinics. Further research will evaluate the impact of this novel approach on additional patient-oriented outcomes after broader dissemination of this initiative throughout our institution.

1-2-3 Project: A Quality Improvement Initiative to Normalize and Systematize Palliative Care for All Patients With Cancer in the Outpatient Clinic Setting.

BACKGROUND: Prior work to integrate early palliative care in oncology has focused on patients with advanced cancer and primarily on palliative care consultation. We developed this outpatient clinic initiative for newly diagnosed patients at any stage, emphasizing primary (nonspecialist) palliative care by oncology teams, with enhanced access to palliative care specialists. METHODS: We piloted the project in two medical oncology specialty clinics (for patients with myelodysplastic syndrome and GI cancer, respectively) to establish feasibility. On a visit-based schedule, patients systematically reported symptoms, information/decision-making preferences, and illness understanding. They also participated in discussions of their core values with their oncology nurse. Oncology teams were first responders to palliative care needs, whereas specialists were available for clinician support and direct patient consultation. RESULTS: All 58 eligible patients were enrolled. In both clinics, patient self-reports documented a heavy symptom burden. Information/decision-making preferences and illness understanding levels varied across patients. Patients prepared new advance directives. Oncology nurses documented discussions of core values. Requests for palliative care consultation decreased over time as oncology teams embraced their primary palliative care role with coaching from the specialists. Clinic workflow and patient volume were maintained. CONCLUSION: Our pilot experience suggests that in outpatient oncology clinics, a structured, scheduled, and systematic approach is feasible to deliver palliative care to newly diagnosed patients with cancer at any stage and throughout their illness trajectory. This novel approach identified important, actionable palliative care needs, relying primarily on oncology teams to respond to these needs, while enhancing access to palliative care specialist input. Expansion to additional clinics will allow evaluation of scalability and generalizability, along with measurement of a broader range of important outcomes.

A Randomized Trial of Acceptability and Effects of Values-Based Advance Care Planning in Outpatient Oncology: Person-Centered Oncologic Care and Choices.

CONTEXT: No standard advance care planning (ACP) process exists in oncology. We previously developed and validated the values questions for Person-Centered Oncologic Care and Choices (P-COCC), a novel ACP intervention combining a patient values interview with an informational care goals video. OBJECTIVES: To pilot-study acceptability and, using randomization, explore potential utility of P-COCC. METHODS: Eligibility included patients with advanced gastrointestinal cancer cared for at a comprehensive cancer center. Participants were randomized 2:2:1 to P-COCC vs. video alone vs. usual care, respectively. Validated assessments of well-being and decisional conflict were completed. Participants in the P-COCC arm also completed three Likert scales (was the intervention helpful, comfortable, and recommended to others); a positive score of at least 1 of 3 indicated acceptability. RESULTS: Patients were screened from 9/2014 to 11/2016; 151 were consented and randomized, 99 whom completed study measures (most common attrition reason: disease progression or death). The primary aim was met: Among 33 participants, P-COCC was acceptable to 32 (97%, 95% CI: 0.84-0.99, P < 0.001). Mean distress scores (0-10) increased (0.43) in the P-COCC arm but decreased in the video-alone (-0.04) and usual-care (-0.21) arms (P = 0.03 and 0.04, P-COCC vs. video-alone and usual-care arms, respectively). There were no significant pre-post change scores on other measures of well-being (e.g., anxiety, depression, stress) or intergroup differences in decisional conflict. CONCLUSION: Our values-based ACP paradigm is acceptable but may increase distress in cancer outpatients. Further studies are investigating the underpinnings of these effects and ways to best support cancer patients in ACP.