Development, testing and implementation of a Belgian Patient REported experience measure for PAncrREatic cancer care (PREPARE) project. Protocol for a Multi-Method research project (Preprint)

2021 ◽  
Author(s):  
Katrien Moens ◽  
Marc Peeters ◽  
Marc Van den Bulcke ◽  
Mark Leys ◽  
Melissa Horlait
Keyword(s):  
Pancreatic Cancer ◽  
Decision Making ◽  
Cancer Patients ◽  
Study Design ◽  
Health Care Professionals ◽  
Cancer Care ◽  
Research Project ◽  
Care Plans ◽  
Patient Reported ◽  
Experience Measure

BACKGROUND Pancreatic cancer patients do not feel involved in the development of their treatment and care plans. In Belgium these plans are decided on during multidisciplinary team meetings. However, limited time is spent on the discussion of the preferences of the patient during these meetings. This research project wants to develop a Patient Reported Experience Measure (PREM) for pancreatic cancer and assess if its use can support collaborative treatment decision making. OBJECTIVE This article aims to outline the protocol for a multi-method research project to improve person-centered pancreatic cancer care in Belgium. Three sub-objectives are pursued: to develop a PREM measuring the experiences of care-related aspects in pancreatic cancer care; to validate the PREM, and to develop and evaluate an (educational) intervention to support the use of the PREM results. METHODS For the development of the PREM an exploratory mixed-methods study design will be used. The study will start with a survey followed by a telephone interview involving pancreatic cancer patients and digestive oncology health care professionals. Study two is the testing of the content and construct validity of the PREM. Study three involves the implementation study according to the MRC framework of a complex intervention introducing the PREM in practice. The effectiveness of the intervention will be investigated using a Pragmatic Randomized Controlled Trial (PrCT) study design. RESULTS The protocol presents the entire structure of the research project. The results of each study are necessary to conduct the following study. CONCLUSIONS The poor prognosis of pancreatic cancer patients should not be considered as a hurdle to not study this patient population group. Involving patients in the research and decision-making processes early on is key. This project aims to realize a scientifically sound research process providing research outputs that can easily and timely be implemented in the care trajectory of pancreatic cancer patients. This research project will also lead to recommendations on how to involve pancreatic cancer patients and how the methodology of this research project can be translated to other patient groups.

Clinicians’ perspectives on strategies to improve cross-institutional collaboration and coordination of pancreatic cancer care for rural patients.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e13532-e13532
Author(s):  
Matthew DePuccio ◽  
Natasha A Kurien ◽  
Angela Sarna ◽  
Ann Scheck McAlearney ◽  
Aslam Ejaz
Keyword(s):  
Pancreatic Cancer ◽  
Decision Making ◽  
Cancer Patients ◽  
Cancer Care ◽  
High Volume ◽  
Institutional Collaboration ◽  
Phone Calls ◽  
Tumor Boards ◽  
Cancer Specialists ◽  
The Impact

e13532 Background: Rural pancreatic cancer patients often lack access to high-volume pancreatic cancer specialists. This lack of access can result in fragmented cancer care—when patients receive care at multiple institutions—and necessitates that specialists engage in cross-institutional collaboration. In the context of fragmented pancreatic cancer care, the strategies specialists use to facilitate collaboration across institutions are poorly understood. Methods: We conducted semi-structured interviews with cancer specialists (medical, surgical, and radiation oncologists) from a high-volume pancreas cancer center (n = 9) and rural community cancer centers (n = 11) to examine specialists’ coordination practices related to treating and co-managing pancreatic cancer patients across their respective institutions. Using qualitative methods, two of the co-authors independently coded the interview transcripts to identify themes related to cross-institutional coordination practices, noting improvement opportunities and facilitative strategies. Results: Cancer specialists described multiple practices to coordinate cross-institutional care including one-on-one phone calls and using a shared electronic medical record or secure email to exchange clinical notes. In recognizing the limitations of these practices, specialists acknowledged the need to develop and implement communication systems that could facilitate real-time discussions and information sharing between high-volume and rural specialists to coordinate diagnostic and treatment plans. Cross-institutional virtual tumor boards were viewed as a potentially useful approach to foster shared clinical decision-making and treatment plan development across institutions, but specialists perceived that logistical, institutional, and technological challenges could limit the use of this approach. Regardless, specialists indicated that cross-institutional virtual tumor boards could help disseminate treatment recommendations as well as identify barriers to care for mutually-shared rural cancer patients. Specialists also indicated that a dedicated patient navigator could help facilitate cross-institutional coordination by bridging communication between specialists while also assisting cancer patients with issues related to housing, transportation, scheduling, and treatment finances. Conclusions: It is important for cancer specialists treating rural cancer patients to have strategies that support efficient communication and decision-making. Cross-institutional virtual tumor boards and dedicated patient navigators are two such strategies that may help facilitate collaboration between high-volume and rural cancer specialists. Future research should examine the impact of these strategies on patients receiving cancer care at multiple institutions.

A predictive model of inflammatory markers and patient-reported symptoms for cachexia in newly diagnosed pancreatic cancer patients

2017 ◽  
Vol 25 (6) ◽  
pp. 1809-1817 ◽  
Author(s):  
David R. Fogelman ◽  
J. Morris ◽  
L. Xiao ◽  
M. Hassan ◽  
S. Vadhan ◽  
...  
Keyword(s):  
Pancreatic Cancer ◽  
Predictive Model ◽  
Cancer Patients ◽  
Inflammatory Markers ◽  
Newly Diagnosed ◽  
Patient Reported

Leveraging the electronic medical record (EMR) to predict patient reported financial hardship in cancer patients.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. 6594-6594
Author(s):  
Sandeep Sai Voleti ◽  
Sikander Ailawadhi ◽  
Carolyn Mead-Harvey ◽  
Rahma M. Warsame ◽  
Rafael Fonseca ◽  
...  
Keyword(s):  
Cancer Patients ◽  
Mayo Clinic ◽  
Cancer Care ◽  
Disease State ◽  
Financial Hardship ◽  
Cancer Center ◽  
Median Income ◽  
Patient Reported ◽  
Race Ethnicity ◽  
Zip Code

6594 Background: Patient reported financial hardship (FH) in cancer care is a growing challenge for patients, their caregivers and healthcare providers. As treatment costs escalate, it is imperative to develop effective strategies to proactively recognize and mitigate FH within oncology practice. Using automated processes to screen and refer patients to appropriate resources is a potential option. At Mayo Clinic, screening for FH involves using a single financial strain question ‘ How hard is it for you to pay for the very basics like food, housing, medical care, and heating?’ completed by all cancer patients annually as part of the Social Determinants of Health (SDOH) assessment. In this study, we describe the prevalence and predictors for FH (denoted by the answer ‘hard and very hard’) in our patient population. Methods: Patients receiving cancer care at the three Mayo Clinic sites (Minnesota, Arizona, and Florida) who completed the FH screen at least once were included in this study. Demographics (age, gender, race/ ethnicity, insurance, employment status, marital status, and zip code) and disease state data for included patients was extracted from the EMR and Mayo Clinic Cancer Registry. Disease state was categorized by type of cancer (hematological or solid malignancy) and cancer stage. Zip code was used to derive median income, rural/urban residence and distance from the cancer center. Multivariable logistic regression models were utilized to examine factors associated with FH. Results: The final study cohort included 31,969 patients with median age 66 years (IQR 57,73), 51% females, and 76% married. Race/ethnicity composition was 93% White, 3% Black, and 4% Hispanic. 52% of patients had Medicare and 43% had commercial insurance. Other notable factors included 48% retired, 41% working/ students, 76% married, and 72% urban residents. Median time from cancer diagnosis was 1.1 year (IQR 0.1, 3.8) and median income was $64,406 (IQR 53,067, 82,038). 31% of patients had hematological malignancies, 20% of the cancers for which staging information was available were metastatic. FH was reported by 4% (n = 1194) of the patients. A significantly higher likelihood of endorsing FH (p < 0.001 for all) was noted in Hispanic (OR 1.64), Black (OR 1.84), American Indian/Alaskan native (OR 2.02), below median income (OR 1.48), rural (OR 1.17), self-pay (OR 2.77), Medicaid (OR 2.29), Medicare (OR 1.43), unemployed/disabled (OR 2.39), single (OR 2.07), or divorced (OR 2.43) patients. Older age, being retired, and living farther from the cancer center were associated with significantly less likelihood of endorsing FH. Conclusions: Our study successfully leveraged the EMR to identify key sociodemographic groups more likely to report FH. An electronic trigger to flag such patients at high-risk of FH and proactively address FH is currently being developed.

scholarly journals Clinical nutrition as part of the treatment pathway of pancreatic cancer patients: an expert consensus

2021 ◽  
Author(s):  
A. Carrato ◽  
L. Cerezo ◽  
J. Feliu ◽  
T. Macarulla ◽  
E. Martín-Pérez ◽  
...  
Keyword(s):  
Pancreatic Cancer ◽  
Cancer Patients ◽  
Clinical Outcomes ◽  
Health Care Professionals ◽  
Unmet Need ◽  
Screening Tools ◽  
Therapeutic Management ◽  
Care Process ◽  
Nutritional Screening

Abstract Purpose Malnutrition is a common problem among pancreatic cancer (PC) patients that negatively impacts on their quality of life (QoL) and clinical outcomes. The main objective of this consensus is to address the role of Medical Nutrition Therapy (MNT) into the comprehensive therapeutic management of PC patients. Methods A Spanish multidisciplinary group of specialists from the areas of Medical Oncology; Radiation Oncology; Endocrinology and Nutrition; and General Surgery agreed to assess the role of MNT as part of the best therapeutic management of PC patients. Results The panel established different recommendations focused on nutritional screening and nutritional screening tools, MNT strategies according to PC status, and MNT in palliative treatment. Conclusions There is an unmet need to integrate nutritional therapy as a crucial part of the multimodal care process in PC patients. Health authorities, health care professionals, cancer patients, and their families should be aware of the relevance of nutritional status and MNT on clinical outcomes and QoL of PC patients.

Associations between patient knowledge of others' experiences and treatment choice in men with localized prostate cancer.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. 6578-6578
Author(s):  
Aaron J. Katz ◽  
Ying Cao ◽  
Xinglei Shen ◽  
Deborah Usinger ◽  
Sarah Walden ◽  
...  
Keyword(s):  
Prostate Cancer ◽  
Decision Making ◽  
North Carolina ◽  
Cancer Patients ◽  
Treatment Options ◽  
Population Based ◽  
Treatment Choice ◽  
Localized Prostate Cancer ◽  
The North ◽  
Patient Reported

6578 Background: Men with localized prostate cancer must select from multiple treatment options, without one clear best choice. Consequently, personal factors, such as knowing other prostate cancer patients who have undergone treatment, may influence patient decision-making. However, associations between knowledge about others’ experiences and treatment decision-making among localized prostate cancer patients has not been well characterized. We used data from a population-based cohort of localized prostate cancer patients to examine whether patient-reported knowledge of others’ experiences is associated with treatment choice. Methods: The North Carolina Prostate Cancer Comparative Effectiveness & Survivorship Study (NC ProCESS) is a population-based cohort of localized prostate cancer patients enrolled from 2011-2013 throughout the state of North Carolina in collaboration with the North Carolina Central Cancer Registry. All patients were enrolled prior to treatment and followed prospectively. Patient decision-making factors including knowledge of others’ experiences with prostate cancer treatment options were collected through patient report. Patient treatment choice was determined through medical record abstraction and cancer registry data. Results: Among 1,202 patients, 17% reported knowing someone who pursued active surveillance (AS) while 28%, 46%, and 59% reported knowing someone who received brachytherapy, external beam radiation (EBRT), or radical prostatectomy (RP), respectively; 26% underwent AS, 9% brachytherapy, 21% EBRT, and 39% RP as their initial treatment. In unadjusted analyses, patients with knowledge of others’ experiences with brachytherapy, EBRT or RP had more than twice the odds of receiving that treatment compared to patients who did not. Knowledge of others’ experience with AS was not associated with choice to undergo AS. Multivariable analysis adjusting for age, race, risk group, and patient-reported goals of care showed knowledge of others’ experiences with brachytherapy (OR 4.60, 95% confidence interval [CI] 2.76 to 7.68), EBRT (OR 2.38, 95% CI 1.69 to 3.34), or RP (OR 4.02, 95% CI 2.84 to 5.70) was significantly associated with odds of receiving that treatment. The odds of receiving a particular treatment option were further increased among patients who reported knowing someone who had a “good” experience with the treatment in question. Conclusions: This is the first population-based study to directly demonstrate the impact of a patient’s knowledge of others’ experiences on treatment choice in prostate cancer. These data provide a new consideration to clinicians in their counseling of patients with newly diagnosed prostate cancer, and also impacts research into the informed decision-making process for this disease.

Enhancing community capacity to improve cancer care delivery and the effect on patient-reported outcomes, healthcare utilization and total costs of care.

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. 6522-6522
Author(s):  
Manali I. Patel ◽  
David Ramirez ◽  
Richy Agajanian ◽  
Hilda H. Agajanian ◽  
Jay Bhattacharya ◽  
...  
Keyword(s):  
Cancer Patients ◽  
Health Plan ◽  
Cancer Care ◽  
Patient Reported Outcomes ◽  
Care Delivery ◽  
Mean Difference ◽  
Healthcare Use ◽  
Difference In Difference ◽  
Patient Reported ◽  
Over Time

6522 Background: To curb rising expenditures and improve patient-reported outcomes (PROs), we designed an intervention with patient, caregiver, provider, and payer input. The intervention is based on prior work using a lay health worker (LHW) to assess advanced cancer patients' symptoms. In this study, we trained the LHW to refer patients to palliative care and/or behavioral health services in response to positive assessments and expanded the intervention to all cancer stages. We implemented the intervention with a health plan and a community oncology group serving elderly racially/ethnically diverse patients to test the effect on symptoms, healthcare use, and total costs. Methods: We enrolled all newly diagnosed health plan beneficiaries with solid and hematologic malignancies from 10/2016 to 11/2017 and compared outcomes to all cancer patients diagnosed in the year prior to the intervention (control arm). Our primary outcome was change in patient-reported symptoms using the Edmonton Symptom Assessment Scale and Personal Health Questionnaire-9 at baseline, 6 and 12 months post-enrollment. Secondarily, we compared 12 month healthcare use and costs. All generalized linear regression models were adjusted for age, stage, comorbidities, diagnosis, and follow-up. Results: 425 patients were in the intervention; 407 in the control. In both groups, mean age was 79 years; 48% were non-Hispanic White, 43% Hispanic, 3% Black, 6% Asian/Pacific Islander; 60% had advanced stages; 28% had breast, 28% had gastrointestinal, and 10% had thoracic cancers. Intervention patients had significantly decreased symptom burden over time as compared with the control (Mean Difference: intervention (-0.77 +/- 0.28 p = 0.01) vs. control: (0.45 +/- 0.25 p = 0.06)); difference in difference: (-0.68 +/- 0.25 p = 0.007)). Depression scores also significantly decreased over time among intervention patients as compared with the control (Mean Difference: intervention (-1.10 +/- 0.38 p = 0.04)) vs control: (1.21 +/- 0.34 p = 0.01); (difference in difference: -2.03 +/- 0.3 p < 0.001)). As compared to the control arm, intervention patients had lower inpatient admissions (0.7 vs. 0.5 p = 0.01) and emergency department visits per thousand patients per year (0.6 vs. 0.42 p = 0.02), and lower median total healthcare costs ($32,270 versus $25,512 p = 0.01). Conclusions: An LHW intervention significantly improved patient-reported outcomes and the value of cancer care delivery and may be a solution to improve burdensome and costly care for patients.

Patient reported abdominal pain as a surrogate of the clinical benefit of tipifarnib in pancreatic cancer patients.

2019 ◽  
Vol 37 (4_suppl) ◽  
pp. 275-275
Author(s):  
Antonio Gualberto ◽  
Catherine Rose Scholz ◽  
Eric Van Cutsem
Keyword(s):  
Pancreatic Cancer ◽  
Overall Survival ◽  
Abdominal Pain ◽  
Cancer Patients ◽  
Clinical Benefit ◽  
Controlled Trial ◽  
Locally Advanced ◽  
Study Entry ◽  
Primary Study ◽  
Patient Reported

275 Background: Tumor CXCL12 expression identifies patients who may benefit from tipifarnib therapy. In pancreatic cancer, CXCL12 is known to decrease abdominal pain by inducing the migration of pain suppressing Schwann cells to tumor lesions. Given the association between CXCL12 and pain suppression, we investigated whether the absence of patient reported abdominal pain could be a surrogate of clinical benefit from tipifarnib in pancreatic cancer patients. Methods: We conducted a retrospective analysis of a randomized placebo-controlled trial comparing gemcitabine plus tipifarnib (GT) versus gemcitabine plus placebo (GP) in pancreatic adenocarcinoma patients. Tipifarnib was given at 200 mg bid orally continuously; gemcitabine at standard dosing. Primary study end point was overall survival. Results: 688 patients were enrolled of whom 155 (22.5%) reported no abdominal pain at study entry, 81 received GT and 74 GP. Baseline characteristics were balanced in the subset of patients with no reported abdominal pain (GT,GP): median age (63,59), female gender (35%,43%), ECOG 0-1 (89%,90%), metastatic disease (64%,70%), 6-month weight loss >10% (48%,39%), 6-month jaundice history (51%,45%), and prior Whipple surgery (16%,13%). Subjects receiving GT who did not report abdominal pain at study entry had higher frequency of locally advanced disease (36% vs 24%) and 6-month jaundice (51% vs 38%), and lower frequency of lung (6% vs 14%) and peritoneum (4% vs 13%) metastases than those reporting pain. No differences in survival were observed in the overall study. Median overall survival for GT was 193 vs 182 days for GP. Notably, absence of abdominal pain at study entry was associated with higher median survival in the GT arm (no pain, pain): 305 vs 176 days, HR=0.52, p<0.0001, whereas no significant effect was observed in the control arm: 184 vs 182 days. A trend for better survival with GT was observed in subset of patients with no abdominal pain at study entry (GT,GP): 305 vs 184 days, p=0.058. Conclusions: Absence of abdominal pain may serve as a surrogate of clinical benefit from tipifarnib in pancreatic cancer. (Van Cutsem et al. JCO 2004;22:1430-8; NCT00005648; Trial Sponsor: J&J PRD). Clinical trial information: NCT00005648.

scholarly journals Decision-making support for cancer patients and their families at a palliative care clinic in a designated regional cancer care hospital

2015 ◽  
Vol 10 (1) ◽  
pp. 324-328
Author(s):  
Hiroaki Watanabe ◽  
Miho Kojima ◽  
Yoshimi Okumura ◽  
Yuki Kato ◽  
Yuko Deguchi ◽  
...  
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Cancer Patients ◽  
Cancer Care ◽  
Care Hospital ◽  
Care Clinic ◽  
Decision Making Support
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