Operationalizing patient-centered cancer care: A systematic review and synthesis of the qualitative literature on cancer patients' needs, values, and preferences.

OBJECTIVE: Efficiently addressing patient priorities and concerns remains a challenge in oncology. Systematic operationalization of patient-centered care (PCC) can support improved assessment and practice of PCC in this unique care setting. This review aimed to synthesize the qualitative empirical literature exploring the National Academy of Medicine (NAM)'s PCC constructs of values, needs, and preferences among patients' during their cancer treatment experiences. METHODS: A systematic review of qualitative studies published between 2002 and 2018 addressing adult patient values, needs, and preferences during cancer treatment was conducted. Medline, EMBASE, PsycINFO, and SCOPUS databases were searched on September 10, 2018. Methodological rigor was assessed using a modified version of the Evaluation Tool for Qualitative Studies. Included study findings were analyzed using line-by-line coding; and the emergent themes were compared to the National Academy of Medicine (NAM)'s PCC dimensions. RESULTS: Twenty-nine primary studies were included in the synthesis. Descriptive themes for values (autonomy, being involved, family, hope, normality, and sincerity), needs (care coordination, information, privacy, support of physical well-being, emotional support (family/friends, peer, provider), and self-support), and preferences (care coordination, decision-making, information delivery, source of social support, and treatment) were identified. "Cancer care context" emerged as an important domain in which these constructs are operationalized. This thematic framework outlines PCC attributes that oncology care stakeholders can evaluate to improve patient experiences. CONCLUSIONS: These findings build on previous PCC research and may contribute to the systematic assessment of patient priorities and the improvement of oncology care quality from the patient perspective.

Exploratory Factor Analysis of a Patient-Centered Cancer Care Measure to Support Improved Assessment of Patients' Experiences.

OBJECTIVE: To increase the understanding of patient-centered care (PCC) and address the need for cross-cutting quality cancer care measures that are relevant to both patients and providers. METHODS: An exploratory factor analysis (EFA) was performed on a short version of the Patients and the Cancer Care Experience Survey, a patient-reported measure of perceived importance of social, emotional, physical, and informational aspects of care, administered to adult patients (n = 104) at a National Cancer Institute-designated comprehensive cancer center. Relationships between PCC dimensions and patient characteristics were also assessed. Principal axis factoring was applied and bivariate analyses were performed using Wilcoxon rank-sum tests. RESULTS: Most of our sample was over 60 years old (63.4%), female (57.4%), and white (74.2%), with either breast (41.2%) or prostate cancer (27.5%). A 5-factor model was identified: (1) quality of life (α = .91), (2) provider social support (α = .83), (3) psychosocial needs (α = .91), (4) nonprovider social support (α = .79), and (5) health information and decision-making support (α = .88). No statistically significant associations were found between these factors and patients' characteristics. CONCLUSIONS: A preliminary factor structure for a cancer PCC measure was identified. Our findings reinforce the interrelated nature of PCC dimensions. The lessons learned from this study may be used to develop a single PCC measure that identifies patient priorities across the cancer care continuum. Data collected from such a measure can be used to support patient engagement in treatment planning and decision-making.

Design and Outcome of a Certification Preparation Program for Outpatient Nurses.

This article presents the design, implementation, and outcomes of a certification preparation program for nurses working in an outpatient clinic. A nurse educator designed curriculum using the Certified Breast Care Nurse test blueprint. Nurse administrators provided the resources and the staff coverage to allow all staff members to attend the sessions without disruption to patient care. This outpatient center has achieved and sustained 100% certification among eligible nurses over the past 5 years.

Implementation and Evaluation of a Clinical Trial Communication Tool for Frontline Clinical Staff.

The safe care of individuals enrolled in clinical trials requires careful communication and coordination between research and clinical staff. An interprofessional team developed a process improvement plan to design, implement.

Understanding racial-ethnic differences in patient-centered care (PCC) in oncology through a critical race theory lens: A qualitative comparison of PCC among Black, Hispanic, and White cancer patients.

OBJECTIVES: Patient-centered care (PCC) experiences can vary by race and ethnicity and likely contribute to cancer care disparities. We compared PCC concepts between Non-Hispanic White (White), Hispanic, and Non-Hispanic Black (Black) cancer patients utilizing Critical Race Theory (CRT) to understand the relationships between racial-ethnic identity and PCC. METHODS: A thematic analysis and in-depth CRT-informed analysis of individual interviews exploring patient values, unmet needs, preferences, and priorities were performed. RESULTS: Participants were aged> 25 yrs old, 53% male, and included 5 Hispanic, 4 Black and 6 White cancer patients. Unmet needs for time to make decisions, and provider interaction between visits and the value for finding meaning in the illness emerged among Blacks and Whites. The unmet need for a long-term treatment plan emerged among Blacks, and the preference of research participation among Whites. A value for optimism was observed among Hispanics and Whites. Racial-ethnic variations in patient descriptions and experiences of their values, unmet needs, preferences, and priorities were identified. CONCLUSIONS: Underrepresented groups face subtle but significant challenges in feeling cared for and understood, voicing concerns, and obtaining quality care. PRACTICE IMPLICATIONS: Increased mutual understanding and provider knowledge of unique PCC experiences among underrepresented cancer patients are needed.

Mental Health and COVID-19: The Psychological Implications of a Pandemic for Nurses.

BACKGROUND: The risk of psychological effects from the COVID-19 pandemic is significant and manifests as stress, anxiety, depression, sleeplessness, and, in some cases, suicide. The need for psychological support services for healthcare providers should be included in all pandemic and disaster planning. OBJECTIVES: The aim of this article is to explore the potential psychological sequelae of nursing during a pandemic and to provide recommendations to support a psychologically healthy work environment. METHODS: Highlights from the literature on psychological sequelae, symptoms, and outcomes related to COVID-19 and prior pandemics is presented, along with insight from the experiences of oncology nurses caring for patients with COVID-19. FINDINGS: Destigmatizing mental health needs for healthcare providers empowers them to seek support. Hospital administrators must develop proactive wellness plans for the triage and management of mental and emotional health needs during a pandemic that prioritize transparent communication, resources for healthcare providers within and beyond the clinical setting, and training.

Management of Immune-Related Adverse Events in Patients Treated With Chimeric Antigen Receptor T-Cell Therapy: ASCO Guideline.

PURPOSE: To increase awareness, outline strategies, and offer guidance on the recommended management of immune-related adverse events (irAEs) in patients treated with chimeric antigen receptor (CAR) T-cell therapy. METHODS: A multidisciplinary panel of medical oncology, neurology, hematology, emergency medicine, nursing, trialists, and advocacy experts was convened to develop the guideline. Guideline development involved a systematic literature review and an informal consensus process. The systematic review focused on evidence published from 2017 to 2021. RESULTS: The systematic review identified 35 eligible publications. Because of the paucity of high-quality evidence, recommendations are based on expert consensus. RECOMMENDATIONS: The multidisciplinary team issued recommendations to aid in the recognition, workup, evaluation, and management of the most common CAR T-cell-related toxicities, including cytokine release syndrome, immune effector cell-associated neurotoxicity syndrome, B-cell aplasia, cytopenias, and infections. Management of short-term toxicities associated with CAR T cells begins with supportive care for most patients, but may require pharmacologic interventions for those without adequate response. Management of patients with prolonged or severe CAR T-cell-associated cytokine release syndrome includes treatment with tocilizumab with or without a corticosteroid. On the basis of the potential for rapid decline, patients with moderate to severe immune effector cell-associated neurotoxicity syndrome should be managed with corticosteroids and supportive care.Additional information is available at www.asco.org/supportive-care-guidelines.

Management of Immune-Related Adverse Events in Patients Treated With Immune Checkpoint Inhibitor Therapy: ASCO Guideline Update.

PURPOSE: To increase awareness, outline strategies, and offer guidance on the recommended management of immune-related adverse events (irAEs) in patients treated with immune checkpoint inhibitor (ICPi) therapy. METHODS: A multidisciplinary panel of medical oncology, dermatology, gastroenterology, rheumatology, pulmonology, endocrinology, neurology, hematology, emergency medicine, nursing, trialists, and advocacy experts was convened to update the guideline. Guideline development involved a systematic literature review and an informal consensus process. The systematic review focused on evidence published from 2017 through 2021. RESULTS: A total of 175 studies met the eligibility criteria of the systematic review and were pertinent to the development of the recommendations. Because of the paucity of high-quality evidence, recommendations are based on expert consensus. RECOMMENDATIONS: Recommendations for specific organ system-based toxicity diagnosis and management are presented. While management varies according to the organ system affected, in general, ICPi therapy should be continued with close monitoring for grade 1 toxicities, except for some neurologic, hematologic, and cardiac toxicities. ICPi therapy may be suspended for most grade 2 toxicities, with consideration of resuming when symptoms revert ≤ grade 1. Corticosteroids may be administered. Grade 3 toxicities generally warrant suspension of ICPis and the initiation of high-dose corticosteroids. Corticosteroids should be tapered over the course of at least 4-6 weeks. Some refractory cases may require other immunosuppressive therapy. In general, permanent discontinuation of ICPis is recommended with grade 4 toxicities, except for endocrinopathies that have been controlled by hormone replacement. Additional information is available at www.asco.org/supportive-care-guidelines.

Virtual Conferences: Optimizing Oncology Nurses' Experience.

One casualty of the COVID-19 pandemic was in-person professional conferences. Organizations, including the American Society of Clinical Oncology, American Association for Cancer Research, and Oncology Nursing Society, had to quickly pivot and radically transform the delivery of the traditional in-person conference to a virtual offering accessible to thousands of oncology healthcare professionals. However, what may have felt catastrophic has revealed unique opportunities to engage individuals in professional offerings, including those who, because of cost or travel, may not have previously participated. In this article, the authors present insights into how to optimize virtual learning experiences during the COVID-19 pandemic and beyond.

Has the Emperor Met His Match?

In the 2015 Ken Burns documentary, Cancer: The Emperor of All Maladies, based on Siddhartha Mukherjee's The Emperor of All Maladies, the 2011 nonfiction award-winning biography about cancer, we are introduced to the first pediatric patient who received an experimental cellular therapy at Children's Hospital of Philadelphia. The outcomes for that patient, initially treated in 2012 and now almost seven years into survivorship, led to the development of clinical trials with commercially developed chimeric antigen receptor (CAR) T-cell products.

Management of Immune-Related Adverse Events in Patients Treated With Immune Checkpoint Inhibitor Therapy: American Society of Clinical Oncology Clinical Practice Guideline.

Purpose To increase awareness, outline strategies, and offer guidance on the recommended management of immune-related adverse events in patients treated with immune checkpoint inhibitor (ICPi) therapy. Methods A multidisciplinary, multi-organizational panel of experts in medical oncology, dermatology, gastroenterology, rheumatology, pulmonology, endocrinology, urology, neurology, hematology, emergency medicine, nursing, trialist, and advocacy was convened to develop the clinical practice guideline. Guideline development involved a systematic review of the literature and an informal consensus process. The systematic review focused on guidelines, systematic reviews and meta-analyses, randomized controlled trials, and case series published from 2000 through 2017. Results The systematic review identified 204 eligible publications. Much of the evidence consisted of systematic reviews of observational data, consensus guidelines, case series, and case reports. Due to the paucity of high-quality evidence on management of immune-related adverse events, recommendations are based on expert consensus. Recommendations Recommendations for specific organ system-based toxicity diagnosis and management are presented. While management varies according to organ system affected, in general, ICPi therapy should be continued with close monitoring for grade 1 toxicities, with the exception of some neurologic, hematologic, and cardiac toxicities. ICPi therapy may be suspended for most grade 2 toxicities, with consideration of resuming when symptoms revert to grade 1 or less. Corticosteroids may be administered. Grade 3 toxicities generally warrant suspension of ICPis and the initiation of high-dose corticosteroids (prednisone 1 to 2 mg/kg/d or methylprednisolone 1 to 2 mg/kg/d). Corticosteroids should be tapered over the course of at least 4 to 6 weeks. Some refractory cases may require infliximab or other immunosuppressive therapy. In general, permanent discontinuation of ICPis is recommended with grade 4 toxicities, with the exception of endocrinopathies that have been controlled by hormone replacement. Additional information is available at www.asco.org/supportive-care-guidelines and www.asco.org/guidelineswiki .

Chemomobilization: Overview of an Educational Quality Improvement Project for Recipients of Autologous Stem Cell Transplantation.

BACKGROUND: In preparation for an autologous stem cell transplantation, patients undergo chemomobilization; however, a dearth of standardized, evidence-based patient education on chemomobilization exists in the literature and in practice.
. OBJECTIVES: The purpose of this quality improvement educational initiative is to identify an evidence-based approach to appraise the educational needs of patients and their caregivers and to enhance chemomobilization education.ʉ۩. METHODS: A review of the literature related to chemomobilization was conducted, as well as an informal survey of educational practices at five National Cancer Institute-designated comprehensive cancer centers. A 14-item survey was administered to 50 patients who underwent chemomobilization to assess their educational needs, experiences, and preferences.ʉ۩. FINDINGS: Patients prefer written information to review. Receiving verbal education from reliable healthcare providers in a structured format may enhance effective comprehension and retention. Patients identified timing, process, side effects, and expectations about chemomobilization as the most important topics to include in education.

Establishing an Inpatient Gym for Recipients of Stem Cell Transplantation: A Multidisciplinary Collaborative.

BACKGROUND: Evidence suggests that exercise can have a profound impact on physiologic and quality-of-life outcomes for patients undergoing hematopoietic stem cell transplantation (HSCT). Despite this, implementation of a gym on inpatient HSCT units may be limited because of space, infrastructure, and budget. OBJECTIVES: This article presents the design, implementation, and evaluation of the gym and highlights its use for individual and group patient activities. METHODS: An interprofessional team at a National Cancer Institute-designated comprehensive cancer center collaborated to design and implement gym space on an inpatient HSCT unit servicing as many as 86 beds. FINDINGS: Informal feedback from patients, as well as metrics on use of the space, indicates that the gym is well received and frequently used. Limitations include the absence of a designated physical therapy technician to supervise individual activity, which may limit patient access when a staff member is unavailable. The cost associated with the implementation of such space may be offset by benefits to patients, including enhanced conditioning, quality of life, and time to discharge, as evidenced in the literature.

Capturing the Experience: Reflections of Women With Breast Cancer Engaged in an Expressive Writing Intervention.

BACKGROUND: Expressive writing has been shown to improve quality of life, fatigue, and posttraumatic stress among breast cancer patients across cultures. Understanding how and why the method may be beneficial to patients can increase awareness of the psychosocial impact of breast cancer and enhance interventional work within this population. Qualitative research on experiential aspects of interventions may inform the theoretical understanding and generate hypotheses for future studies. AIM: The aim of the study was to explore and describe the experience and feasibility of expressive writing among women with breast cancer following mastectomy and immediate or delayed reconstructive surgery. METHODS: Seven participants enrolled to undertake 4 episodes of expressive writing at home, with semistructured interviews conducted afterward and analyzed using experiential thematic analysis. RESULTS: Three themes emerged through analysis: writing as process, writing as therapeutic, and writing as a means to help others. CONCLUSIONS: Findings illuminate experiential variations in expressive writing and how storytelling encourages a release of cognitive and emotional strains, surrendering these to reside in the text. The method was said to process feelings and capture experiences tied to a new and overwhelming illness situation, as impressions became expressions through writing. Expressive writing, therefore, is a valuable tool for healthcare providers to introduce into the plan of care for patients with breast cancer and potentially other cancer patient groups. IMPLICATIONS FOR PRACTICE: This study augments existing evidence to support the appropriateness of expressive writing as an intervention after a breast cancer diagnosis. Further studies should evaluate its feasibility at different time points in survivorship.

Exploring the Cancer Experiences of Young Adults in the Context of Stem Cell Transplantation.

BACKGROUND: Cancer is the leading cause of nonaccidental morbidity and mortality among young adults (YAs) in the United States. Stem cell transplantation (SCT), a treatment modality for a variety of YA malignancies, often requires prolonged hospitalization and immune-compromising treatment regimens. Stem cell transplantation may isolate YAs physically and emotionally, contributing to uncertainty about treatment processes, outcomes, and long-term sequelae. Studies in this population suggest that uncertainty can contribute to difficulty accomplishing basic developmental tasks. Few studies have examined the experiences of YAs in active cancer treatment, particularly those undergoing SCT. OBJECTIVES: This study explored the cancer experiences of YAs aged 18 to 25 years leading up to SCT and explored how YAs construct issues of uncertainty related to the transplantation experience. METHODS: Interviews with 14 YAs conducted within 24 hours of admission to undergo SCT were analyzed using thematic analysis from a medical ethnographic perspective. RESULTS: Themes emerged within 2 domains: relational and psychoemotional. The relational theme of "altered relationships" included the subthemes of "moving from" and "moving toward." The psychoemotional theme of the "power of perspective" included the subthemes of "optimism," "acknowledgment of death," "informational empowerment," and "developing a new outlook." CONCLUSIONS: Our findings offer new insights into the YA experience in the context of active cancer treatment, specifically how the cancer experience impacts relationships and how this experience is influenced by YAs' perspectives. IMPLICATIONS FOR PRACTICE: This study provides a foundation for addressing the psychosocial needs of YAs hospitalized for SCT, paying particular attention to the development of specific interventions.

Impact of an incentive-based mobility program, "Motivated and Moving," on physiologic and quality of life outcomes in a stem cell transplant population.

BACKGROUND: Research suggests that patients experience increased fatigue, reduced physical activity, and diminished quality of life (QOL) after hematopoietic stem cell transplantation (HSCT). Structured exercise during hospitalization has been shown to maintain or improve fatigue. Incentive-based interventions have not been tested to encourage physical activity maintenance. OBJECTIVES: The study's aim was to evaluate the effect of participation in an incentive-based mobility program on fatigue, physical conditioning, performance status, and QOL in individuals undergoing allogeneic HSCT. We hypothesized that program participation would affect these variables and that time spent engaged in physical activity would correlate with improved outcomes. METHODS: A 1-group repeated-measures design used the Brief Fatigue Inventory, 6-minute walk test, and the Functional Assessment of Cancer Therapy-Bone Marrow Transplant Scale to assess study variables. Repeated-measures models assessed the effect of participation time on these variables. RESULTS: Individuals with higher participation (minutes) significantly increased 6-minute walk test scores throughout hospitalization but had no significant changes in Brief Fatigue Inventory and Functional Assessment of Cancer Therapy-Bone Marrow Transplant Scale scores. Fatigue and QOL decreased over hospitalization but improved by discharge. Subjects who demonstrated higher participation averaged fewer hospital days (R = 1.65; P = .005). CONCLUSIONS: This study is unique in examining the impact of an incentive-based mobility program, participation in which may decrease length of hospital stay for HSCT patients. Randomized trials are needed to further validate these findings and assess additional variables that can influence outcomes. IMPLICATIONS FOR PRACTICE: An incentive-based mobility program during hospitalization for HSCT has the potential to minimize fatigue and stabilize, if not improve, QOL.