Using Stakeholder Engagement to Overcome Barriers to Implementing Patient-reported Outcomes (PROs) in Cancer Care Delivery: Approaches From 3 Prospective Studies

Introduction: Patient-reported outcome (PRO) measures used during cancer care delivery improve communication about symptoms between patients and clinicians and reduce service utilization for uncontrolled symptoms. However, uptake of PROs in routine cancer care has been slow. In this paper, we describe stakeholder engagement activities used to overcome barriers to implementing PROs. Implementation occurred in 2 study settings: PROs completed in the waiting room and reviewed during clinical visits to guide symptom management for multiple myeloma (visit-based PROs); and weekly PROs completed by cancer patients between chemotherapy visits to monitor symptoms at home (remote PROs). Methods: PRO implementation steps across studies included: (1) clinician and patient input on key symptoms, PRO measures, and identifying which PRO responses are clinically concerning to better target nursing actions; (2) developing PRO-based clinical decision support (CDS) for responding to concerning PROs; (3) training clinicians and clinical research assistants to interpret PROs and use software; and (4) describing implementation impact (frequency of concerning PRO responses and nursing actions). Discussion: Clinician and patient input was critical for identifying key symptoms, PRO measures, and clinically concerning response options. For the visit-based PRO observational study, all symptom scores appeared on a clinician dashboard, and those rated ≥1 by patients (on a 0–4 or 0–10 scale) had PRO-based CDS available for access. For the 2 remote PROs trials, stakeholders recommended that the 2 “worst” response options (eg, PRO responses of “often”/“always” or “severe”/“very severe”) would trigger an automated email alert to a nurse along with PRO-based CDS. In each study, PRO-based CDS was tailored based on clinician input. Across studies, the most common nursing response to concerning PROs was counseling patients on (or providing care plans for) self-management of symptoms. In the trials, the percentage of weekly remote PROs generating an alert to a nurse ranged from 13% at an academic center to 36% in community oncology practices. Key Points: Across 3 prospective studies, PROs implemented into cancer care enabled tailored care based on issues identified on PROs. Stakeholder engagement was critical for successful implementation. This paper assists in addressing important PRO implementation challenges by describing a stakeholder-driven approach

Perspectives From Patients With Chronic Lung Disease on a Telehealth-Facilitated Integrated Palliative Care Model: A Qualitative Content Analysis Study

BACKGROUND: Chronic lung disease affects nearly 37 million Americans and often results in significant quality of life impairment and healthcare burden. Despite guidelines calling for palliative care (PC) integration into pulmonary care as a vital part of chronic lung disease management, existing PC models have limited access and lack scalability. Use of telehealth to provide PC offers a potential solution to these barriers. This study explored perceptions of patients with chronic lung disease regarding a telehealth integrated palliative care (TIPC) model, with plans to use findings to inform development of an intervention protocol for future testing. METHODS: For this qualitative study, we conducted semi-structured interviews between June 2021- December 2021 with patients with advanced chronic lung disease. Interviews explored experiences with chronic lung disease, understanding of PC, and perceived acceptability of the proposed model along with anticipated facilitators and barriers of the TIPC model. We analyzed findings with a content analysis approach. RESULTS: We completed 20 interviews, with two that included both a patient and caregiver together due to patient preference. Perceptions were primarily related to three categories: burden of chronic lung disease, pre-conceived understanding of PC, and perspective on the proposed TIPC model. Analysis revealed a high level of disease burden related to chronic lung disease and its impact on day-to-day functioning. Although PC was not well understood, the TIPC model using a shared care planning approach via telehealth was seen by most as an acceptable addition to their chronic lung disease care. CONCLUSIONS: These findings emphasize the need for a patient-centered, shared care planning approach in chronic lung disease. The TIPC model may be one option that may be acceptable to individuals with chronic lung disease. Future work includes using findings to refine our TIPC model and conducting pilot testing to assess acceptability and utility of the model

Outcomes and Satisfaction After Delivery of a Breast Cancer Survivorship Care Plan: Results of a Multicenter Trial

Survivorship care plans (SCPs) have been suggested to reduce fragmentation of care experienced by cancer survivors. Acceptance of SCPs is high, but trials in the United States are few. This pilot study used a quasiexperimental design to examine the outcomes achieved by breast cancer survivors receiving a standardized SCP visit at one of seven comprehensive cancer centers

Patterns and determinants of physical activity and exercise in older versus younger female breast cancer survivors

There are more than 2.5 million breast cancer survivors living in the United States today, and over half are 60 years and older. These breast cancer survivors (BCS), and older women in particular, are at higher risk than the general population for a number of negative health and functional outcomes and decreased quality of life. Physical activity (PA) and exercise have the potential to modify these outcomes, but the majority of breast cancer survivors do not engage in recommended levels of PA, especially older women. A critical step towards effectively increasing PA in BCS is to identify and describe predictors of PA that can be targeted by interventions. Social Cognitive Theory (SCT) has consistently demonstrated high predictive power for understanding PA, and SCT constructs (self-efficacy [SE], outcome expectations [OE], and perceived barriers [PB]) are significant predictors of PA in women undergoing adjuvant breast cancer therapy. Examination of SCT constructs has not been previously undertaken in BCS following treatment, particularly in older BCS, and task and barrier self-efficacy have rarely been independently examined. Therefore, the fundamental goal of this study was to describe PA and exercise and their modifiable determinants in order to guide future intervention aimed at increasing PA in BCS. A total of 140 BCS approximately one to two years following diagnosis were recruited from a single comprehensive breast center. PA, exercise, and SCT constructs were examined using self-report measures, including comparison between younger (\u3c 60 years) and older (≥ 60 years) women. Although overall PA levels were high, a minority of BCS, especially older women, engaged in exercise. Most PA was accounted for by habitual activity. SE, OE, and PB each were significant predictors of exercise in BCS, and are therefore important targets for future intervention research, particularly task self-efficacy, which emerged as the most important predictor of exercise and was significantly lower in older women. Interventions aimed at increasing PA and exercise in BCS are clearly still needed, and data from this study can help to inform the development of age-specific interventions aimed at improving PA and exercise behavior in both older and younger BCS

Perspectives from patients with chronic lung disease on a telehealth-facilitated integrated palliative care model: a qualitative content analysis study

Abstract Background Chronic lung disease affects nearly 37 million Americans and often results in significant quality of life impairment and healthcare burden. Despite guidelines calling for palliative care (PC) integration into pulmonary care as a vital part of chronic lung disease management, existing PC models have limited access and lack scalability. Use of telehealth to provide PC offers a potential solution to these barriers. This study explored perceptions of patients with chronic lung disease regarding a telehealth integrated palliative care (TIPC) model, with plans to use findings to inform development of an intervention protocol for future testing. Methods For this qualitative study, we conducted semi-structured interviews between June 2021- December 2021 with patients with advanced chronic lung disease. Interviews explored experiences with chronic lung disease, understanding of PC, and perceived acceptability of the proposed model along with anticipated facilitators and barriers of the TIPC model. We analyzed findings with a content analysis approach. Results We completed 20 interviews, with two that included both a patient and caregiver together due to patient preference. Perceptions were primarily related to three categories: burden of chronic lung disease, pre-conceived understanding of PC, and perspective on the proposed TIPC model. Analysis revealed a high level of disease burden related to chronic lung disease and its impact on day-to-day functioning. Although PC was not well understood, the TIPC model using a shared care planning approach via telehealth was seen by most as an acceptable addition to their chronic lung disease care. Conclusions These findings emphasize the need for a patient-centered, shared care planning approach in chronic lung disease. The TIPC model may be one option that may be acceptable to individuals with chronic lung disease. Future work includes using findings to refine our TIPC model and conducting pilot testing to assess acceptability and utility of the model

Integrating Touchscreen-Based Geriatric Assessment and Frailty Screening for Adults With Multiple Myeloma to Drive Personalized Treatment Decisions

Patients were white (72%; n = 86), mean age was 72 years (range, 65-85 years), and averaged 7.71 minutes (range, 2-17 minutes) for survey completion. Providers averaged 3.2 minutes (range, 1-10 minutes) to review mGA results. Using International Myeloma Working Group frailty score, patients were fit (39%; n = 64), intermediate fit (33%; n = 55), or frail (28%; n = 46). Providers selected more aggressive treatments in 16.3% of patients and decreased treatment intensity in 34% of patients; treatment intensification was more common for fit patients and milder treatments for frail patients (χ2 = 20.02; P < .0001). Transplant eligibility significantly correlated with fit status and transplant ineligibility with frail status (P = .004). Outcomes on 144 patients 3 months post study visit showed 19.4% (n = 28) had grade ≥ 3 hematologic toxicities, 38.9% (n = 56) had dose modifications, and 18% (n = 26) had early therapy cessation.12 month embargo; first published online 25 November 2019This item from the UA Faculty Publications collection is made available by the University of Arizona with support from the University of Arizona Libraries. If you have questions, please contact us at [email protected]

Additional file 1 of Perspectives from patients with chronic lung disease on a telehealth-facilitated integrated palliative care model: a qualitative content analysis study

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