Patient Perceptions of Care Coordination during Neoadjuvant Therapy for Gastrointestinal Cancers: A Mixed Methods Analysis.

PURPOSE: Effective cancer care coordination (CCC) is an integral component of health care delivery and critical to achieving optimal oncologic outcomes. Neoadjuvant therapy (NT), the delivery of multimodality therapy prior to surgery, is inherently complex and multidisciplinary, but CCC during NT is poorly understood. The objective of this study was to characterize patient perceptions of CCC during NT using a mixed methods approach. METHODS: This study is a cross-sectional analysis of patients with gastrointestinal cancers receiving NT who participated in a prospective longitudinal cohort study evaluating their real-time experience using a customized smartphone application. Patients completed the Cancer Care Coordination Questionnaire for Patients (CCCQ-P), a 20-item validated measure of care coordination quality, six weeks after initiating NT. Items were scored on a 5-point Likert scale, and subsections on communication (13 questions) and navigation (7 questions) were calculated with higher scores signifying better CCC. Univariate linear regression was used to calculate the impact of fragmented care and other factors on perceived CCC. Semi-structured interviews were conducted among a convenience sample of patients (n = 5); transcribed interviews were then coded using an inductive approach. RESULTS: Among 82 participants, mean age was 61 years old, 68% were male, and mean number of comorbidities was 1.68. Overall (mean 76.6 out of 100), communication subsection (48.6 out of 65), and navigation subsection (28.0 out of 35) CCCQ-P scores suggested overall positive perceptions of care coordination. Qualitative analysis of patient interviews highlighted the need for coordination among physicians before communicating the plan to patients as well as the importance of providers communicating plans in verbal and written form. CONCLUSIONS: Successful completion of NT requires significant care coordination between patients and healthcare professionals. Yet, in this cross-sectional analysis of patients on a prospective cohort study, patient perceptions of CCC during NT were overall positive. Future research should focus on optimizing other aspects of care delivery in order to improve outcomes of NT.

Evaluating the caregiver experience during neoadjuvant therapy for pancreatic ductal adenocarcinoma.

INTRODUCTION: Neoadjuvant therapy (NT) is increasingly recommended for patients with localized pancreatic ductal adenocarcinoma (PDAC). Recent research has highlighted the significant treatment burden that patients experience during NT, but caregiver well-being during NT is poorly understood. METHODS: A cross-sectional mixed-methods analysis of primary caregivers of patients with localized PDAC receiving NT was undertaken. All patients completed the Caregiver Quality of Life Index-Cancer (CQOLC) survey, while semi-structured interviews were conducted among a convenience sample of participants. RESULTS: Among 28 caregivers, the mean age was 60.1 years, and most were patient spouses/significant others (71.4%). Patients had resectable (18%), borderline resectable (46%), or locally advanced (36%) PDAC with a mean treatment duration of 2.9 months at the time of their caregiver's enrollment. Most caregivers felt that they received adequate emotional/psychosocial support (80%) and understood the rationale for NT (93%). A majority (60%) reported that caregiving responsibilities impacted their daily lives and required a decrease in their work hours, leading to financial challenges (47%). While overall QOL was moderate (mean 83 ± 21.1, range 0-140), "emotional burden" (47.3 ± 20.9), and "positive adaption" (57.3 ± 13.9) were the lowest ranked CQOLC subsection scores. DISCUSSION: Caregivers of patients with PDAC undergoing NT experience significant emotional symptoms and impact on their daily lives. Assessing caregiver needs and providing resources during NT should be a priority.

Patient Experiences After Aborted Cancer Surgery: A Qualitative Study.

BACKGROUND: Surgical resection is a necessary component of curative-intent treatment for most solid-organ cancers but is occasionally aborted, most often due to occult metastatic disease or unanticipated unresectability. Despite its frequency, little research has been performed on the experiences, care needs, and treatment preferences of patients who experience an aborted cancer surgery. METHODS: Semistructured interviews of patients who had previously experienced an aborted cancer surgery were conducted, focusing on their recalled experiences and stated preferences. All interviews were audio recorded, transcribed, and coded by two independent researchers by using NVivo 12. An integrative approach to qualitative analysis was used-both inductive and deductive methods-and iteratively identifying themes until saturation was reached. RESULTS: Fifteen patients with an aborted cancer surgery participated in the interviews. Cancer types included pancreatic (n = 9), cholangiocarcinoma (n = 3), hepatocellular carcinoma (n = 1), gallbladder (n = 1), and neuroendocrine (n = 1). The most common reasons for aborting surgery included local tumor unresectability (n = 8) and occult metastatic disease (n = 7). Five subthemes that characterized the patient experience following an aborted cancer surgery emerged, including physical symptoms, emotional responses, impact on social and life factors, coping mechanisms, and support received. CONCLUSIONS: This qualitative study characterizes the impact of aborted cancer surgery on multiple domains of quality of life: physical, emotional, social, and existential. These results highlight the importance of developing patient-centered interventions that focus on enhancing quality of life after aborted cancer surgery.

Characterizing treatment burden during neoadjuvant therapy for patients with gastrointestinal cancer: A mixed methods analysis.

INTRODUCTION: Neoadjuvant therapy (NT) is increasingly used before surgery for patients with gastrointestinal (GI) cancers. Treatment burden is a patient-centered measure defined as the work of being a patient and characterizes the impact of medical treatment on one's functioning and well-being. While treatment burden has previously been studied in chronic diseases and cancer survivorship, the treatment burden of undergoing NT is unknown. METHODS: All patients enrolled in a prospective cohort study evaluating the real-time experience of NT for GI cancers completed either the Patient Experience with Treatment and Self-management (PETS) survey, a 46-item validated measure of treatment burden, or the mini-PETS questionnaire. PETS subsections were scored on a 5-point Likert scale and then standardized on a 100-point scale (a higher number means more treatment burden). Semistructured interviews were conducted among a convenience sample of patients (n = 5); qualitative data were coded and then analyzed using an integrated approach. RESULTS: Among 126 participants, the mean age was 59 years old, 61% were male, and the mean number of comorbidities was 1.57. The most common cancers were colorectal (46%) and pancreatic (28%). The mean length of NT treatment was 3.7 months and 80.2% of patients underwent surgical resection following NT. The highest standardized treatment burden scores were observed in healthcare services (44 ± 15), social limitations (44 ± 26), exhaustion (41 ± 23), and medical expenses (40 ± 18) whereas the lowest scores were reported in medication use (19 ± 16) and interpersonal challenges (19 ± 17). Commonly experienced emotional symptoms were feeling worn out (43%) or frustrated (32%). No significant differences were observed in mean treatment burden subscores between patients who underwent surgery versus those who did not. Qualitative analysis of treatment burden during NT identified common themes of impact on normal life activities, challenges with healthcare access, impact on relationships, and significant physical and emotional symptoms. CONCLUSIONS: NT is associated with a significant treatment burden, particularly in the domains of accessing healthcare services, social limitations, and exhaustion. Given the increasing use of NT for GI cancers, novel patient-centered approaches are needed to improve quality of life and ensure the completion of multimodality therapy.

Evaluating the Quality of Online Information Regarding Neoadjuvant Therapy for Pancreatic Cancer.

PURPOSE: Neoadjuvant therapy (NT) is increasingly utilized for patients with localized pancreatic ductal adenocarcinoma (PDAC). Patients with cancer have high information needs and the Internet has materialized as a leading source of information for many patients. Nevertheless, little is known about the availability, accessibility, quality, and readability of online information regarding NT for PDAC. METHODS: A search of online patient informational materials (PIMs) pertaining to NT for PDAC was conducted using a combination of common search engines and browsers. Two independent researchers evaluated the readability, quality, and availability of unique PIMs from the top 25 websites from each search using validated measures. RESULTS: Among the 130 websites retrieved, 46 (35.4%) unique PIMs focused on treatment of PDAC. Only 30 (23%) mentioned NT as a possible treatment option. Downstaging was the rationale for NT mentioned in the majority (90%) of websites. The mean quality and reliability of the 30 PIMs, assessed using the DISCERN instrument, was 3.3 ± 0.7, suggesting moderate quality/reliability. The mean readability score, assessed using the SMOG Grade tool, was 10.96 ± 1.49, which is equivalent to an 11th grade reading level. CONCLUSION: The low availability, poor readability, and moderate quality of online informational materials regarding NT for PDAC highlight the need for new patient-centered resources to educate patients and caregivers on an increasingly utilized treatment strategy for localized PDAC.

Health system chief diversity officers: who are they and what do they do?

The Chief Diversity Officer, or CDO, is an increasingly common leadership role within U.S. health care delivery systems. Very little is known about the CDO role across hospitals and health systems. To map the responsibilities and characteristics of how CDOs are positioned within health care, we first searched the web pages of health systems to identify which systems have CDOs, or what we call "CDO-equivalents." Second, we expanded the search of public documents to new-hire announcements and the online social/professional media site, LinkedIn, to identify information regarding each identified leader's roles and responsibilities. Finally, text from these documents describing the leader's roles was uploaded to Atlas.ti, a qualitative analytic software, to identify common themes. There were 60 diversity leaders among 359 U.S. health care systems. Seven consistent roles and responsibilities were identified reflecting a very broad scope of work. Future research should focus on exploring the scope of this leadership role.

Characterizing the patient experience during neoadjuvant therapy for pancreatic ductal adenocarcinoma: A qualitative study.

BACKGROUND: Neoadjuvant therapy (NT) has increasingly been utilized for patients with localized pancreatic ductal adenocarcinoma (PDAC). It is the recommended approach for borderline resectable (BR) and locally advanced (LA) cancers and an increasingly utilized option for potentially resectable (PR) disease. Despite its increased use, little research has focused on patient-centered metrics among patients undergoing NT, including patient experiences, preferences, and recommendations. A better understanding of all aspects of the patient experience during NT may identify opportunities to design interventions aimed at improving quality of life; it may also facilitate the completion of NT and receipt of surgery, ultimately optimizing long-term outcomes. AIM: To understand the experience of patients initiating and receiving NT to identify opportunities to improve neoadjuvant cancer care delivery. METHODS: Semi-structured interviews of patients with localized PDAC during NT were conducted to explore their experience initiating and receiving NT. Interviews took place between August 2020 and October 2021. Due to the descriptive nature of the research, questions were open ended. Interviews were conducted over the phone, audio recorded and then transcribed. All interviews were coded by two independent researchers using NVivo 12, iteratively identifying themes until thematic saturation was achieved. An integrative approach to qualitative analysis was used, utilizing both inductive and deductive methods. RESULTS: A total of 12 patients with localized PDAC were interviewed. Patients with BR (n = 7), PR (n = 2), and LA (n = 3) cancers participated in the study. All patients indicated that choosing NT was the doctor's recommendation, while most reported not being familiar with the concept of NT (n = 11) and that NT was presented as the only option (n = 8). Five themes describing the patient experience emerged: physical symptoms, emotional symptoms, coping mechanisms, access to care, and life factors. The most commonly cited recommendation for improving the experience of NT was improved education before and during NT (n = 7). Patients highlighted the need for more information on the rationale behind choosing NT prior to surgery, the anticipated surgery and its likelihood of surgery occurring after NT, as well as general information prior to starting NT treatment. The need for seeing different members of the healthcare team, including ancillary services was also frequently cited as a recommendation for improving the experience of NT (n = 5). CONCLUSION: This study provides a framework to allow for a better understanding of the PDAC patient experience during NT and highlights opportunities to improve quality and quantity of life outcomes.

A framework of the institutional policies and practice environments of nurse practitioner primary care models: A cross-case analysis.

PURPOSE: The purpose of this article was to compare the implementation of distinct models of nurse practitioner (NP) integration into primary care offices. DESIGN/METHODOLOGY: A multiple case study design of three NP primary care practice models allowed for in-depth exploration of the management processes supporting the utilization of NPs. At each site, semistructured qualitative interviews, document review, and site tours/observations were conducted and subject to cross-case analysis guided by the NP Primary Care Organizational Framework (NP-PCOF)-developed for this study based on existing theory. RESULTS: Our case study sites represent three distinct NP primary care models. In the restricted practice model, NPs care for same-day/walk-in acute patients. NPs in the independent practice model have an independent panel of patients and interact collegially as independent coworkers. NPs in the comanagement model function on a team (a physician and two NPs), have a team office space, collectively care for a shared panel of patients, and can earn financial bonuses contingent upon meeting team quality metrics. Our cross-case analysis confirmed differences in physical space design, the relational structure of a workplace, and the capacity for innovation via NP compensation and performance metrics across different NP primary care models. CONCLUSION: Our findings suggest that NP primary care models are supported by complex management systems and the NP-PCOF is a tool to help understand this complexity. IMPLICATIONS: The NP-PCOF is a framework to understand the management systems that facilitate the utilization of NPs within primary care organizations.

Outcomes of aborted cancer surgery: a call for patient-centered research.

PURPOSE: While not always sufficient, surgery is a critical component of contemporary multidisciplinary cancer care and is generally necessary for the curative-intent treatment of most solid organ cancers. Patients who undergo aborted cancer surgery may experience many of the same surgical symptoms, need for recovery, and risk of complications as patients who undergo successful curative-intent surgery while simultaneously experiencing the psychosocial distress of a terminal change in their prognosis as well as the side effects of cancer left in situ. METHODS: A systematic review of the PubMed, Medline, CINAHL, and PsychInfo databases was performed of literature pertaining to the quality of life, experiences, care needs, coping strategies, and/or preferences of patients following aborted cancer surgery. RESULTS: Among 12,060 initially identified articles, none met the final inclusion criteria. Given this evidence gap, this commentary summarizes the lack of relevant literature on patient-centered outcomes following aborted cancer surgery and highlights opportunities for future patient-centered research. CONCLUSION: There is a significant lack of patient-centered research pertaining to outcomes of aborted cancer surgery. Future research should focus on characterizing patients' experiences, care needs, and preferences following aborted cancer surgery which might inform patient-centered interventions that can lead to improved quality and quantity of life.