bluuebunny/crossref_metadata_2025 huggingface dataset:
Use of Myeloma Patient Outcome Scale (MyPOS) to gauge the effectiveness of palliative management in patients with multiple myeloma: Experience from a large tertiary academic center in India.
Authors: Koolwal Kapoor Astha , Mishra Seema , Bhatnagar Sushma , Kumar Lalit , Garg Rakesh , Gupta Nishkarsh , Kumar Vinod , JeeBharti Sachidanand
Published: June 2023

e24137

Background: A diagnosis of Multiple Myeloma (MM) can carry significant physical, social, functional and emotional repercussions. There is a lack of data on Baseline Quality of Life (QOL) in patients with MM and effectiveness of palliative management in the Indian context, especially after the advent of newer chemo-immunotherapeutic agents and autologous stem cell transplant (ASCT). Myeloma Patient Outcome Scale (MyPOS) is the first questionnaire developed specific for MM patients. Objectives and Methods: To evaluate symptom burden and quality of life in MM patients admitted to the medical oncology ward. To assess change in quality of life and symptoms as well as analgesic requirements on telephonic follow up after one and three months from index admission. After institutional ethical clearance, MM inpatients were prospectively enrolled. Clinical and treatment related details were recorded. MyPOS questionnaire was administered as well as a detailed pain assessment using Brief Pain Inventory (BPI) was carried out at baseline, 1 and 3 months. Results: 82 out of 100 MM patients consented for recruitment (Mean age- 52 +/- 9yrs; Male- 55%). Mean duration of the disease since diagnosis was less than 1 year (0.86 years), with a mean International staging system (ISS) score of 2. Up to half (37/82, 45%) of the patients received ASCT in addition to chemotherapy. The baseline Global MyPOS Score was 58 +/- 8.8 while the mean Pain severity (MPS) and interference (MPI) scores were 25+/-8 and 43+/-10 respectively. The most painful region was the back. Only Tramadol was sufficient for a small minority (6/82, 7.4%), most required oral morphine. Most patents had significant interval improvement in their pain and QOL scores with a p less than 0.01 on follow-up (MyPOS at 1 month and 3 month were 81+/-6 and 78+/-5, MPS were 21+/-13 and 17+/-1.1, MPI were 38+/-2.2 and 37+/-2.1 respectively). Conclusions: Adequate pain management can significantly improve quality of life in MM patients. Use of standardized questionnaires such as MyPOS is a quintessential tool for the palliative specialist in order to gauge therapeutic efficacy.
Adverse health effects of opioids in survivors of breast cancer after active cancer treatment.
Authors: Haque Reina , Chen Lie H. , Shi Jiaxiao , Gu Zheng , Brady-Rogers Moira , Chlebowski Rowan T. , Hechter Rulin
Published: June 2023

e24145

Background: Limited data exists about the effects of opioid use in breast cancer survivors post-treatment. Thus, we examined the risk of adverse events associated with opioid use among breast cancers survivors after active cancer treatment. Methods: We assembled a cohort of women diagnosed with in situ, localized, and regional breast cancer 2009-2019 within a large integrated healthcare system in southern California. Data were captured from the tumor registry, electronic health records, and pharmacy database. We examined opioids use in women with breast cancer after one-year post survival and followed them through December 2021. Opioid use after the first prescription was considered. We examined the risk of incident cardiovascular events (stroke, acute myocardial infarction, arrhythmia); lung problems (COPD, pneumonia); fractures; and falls requiring medical attention. Follow-up was censored at membership disenrollment, death, or study’s end (12/31/2021). We calculated the maximum daily morphine milligrams equivalent (MME) dose during follow-up. Incidence rates (per 1000 person-years, PY) of adverse events were calculated, and multivariable analyses were conducted to estimate hazard ratios (HR) associated with time-dependent opioid use based on Cox proportional hazards models. We adjusted for age; breast cancer surgery; adjuvant cancer therapies; BMI; comorbidity; demographics; and psychiatric drugs. Results: The cohort included 33,989 breast cancer survivors (mean age: 62 years, range: 22-106), followed a maximum of 12 years (median: 5.6 years). The cohort was diverse: 12% African American/Black; 14% Asian/Pacific Islander; 22% Latine; 51% White, and 1% other/mixed. A total of 20,311 women (60%) used opioids during follow-up. The median MME during follow-up was 43.0 (IQR: 30.0-75.0). Falls were the most common event, with a dramatically higher rate for opioid user (47.0/1,000 PY) than non-use (21.8/1,000 PY), corresponding to nearly a doubled risk of falls (adjusted HR = 1.8, 95% CI:1.6-1.9). Similarly, adjusted HRs (95% CIs) for lung problems (HR = 1.6, 1.4-1.7); fractures (HR = 2.1, 2.0-2.3); and CV events (HR = 1.6, 1.3-2.0) were all higher for opioid use. Conclusions: Over 60% of breast cancer survivors used opioids post active treatment. We found statistically significant 1.6-2.1-fold increased risks of adverse events (falls, lung problems, fractures and CV events) associated with opioid use. Clinicians must weigh the risk and benefits of treating pain with opioids post-treatment.
D-CRSE: Diminishing chemotherapy related side effects through patient education.
Authors: Dailey Hannah , Labe Shelby A. , Jones Gavin , Bhasker Joanna , Kanwar Rhea , Hafiz Sonia , Crago Madison , Fitzgerald Britney , Mikhail Daniella , Zhu Junjia , Vasekar Monali K.
Published: June 2023

e24148

Background: Patient (pt) education materials regarding self-management of cytotoxic chemotherapy related side effects are lacking at Penn State Cancer Institute (PSCI), resulting in patients using disreputable sources. We created a brochure that educates patients on common side effects, tools to address the problems themselves, information on when to contact their oncologist, and guidance on when to visit the ED. The aim of our pilot study is to evaluate the feasibility at PSCI and subsequently improve pt related outcomes and quality of life through pt education. Methods: Chemotherapy naïve pts with breast or gastrointestinal (GI) cancer were enrolled from November 2021-December 2022. At the baseline visit, pts were consented, given the brochure and asked to complete surveys. The Emotional Thermometer Scale (ETS) evaluates mental health, measuring distress, anxiety, depression, and anger while the Memorial Symptom Assessment Scale (MSAS) evaluates symptoms commonly seen with chemotherapy. MSAS means were also broken down into physical, psychological, and global distress index (GDI) subsets. Pts filled out the same surveys at their 6 and 12 week visits to assess change over time. Results: 40 pts completed the baseline surveys, and 36 of them had at least one additional visit. Some key demographics were: 82.2% female, 17.8% male, 22.2% GI cancer (71.4% colonic adenocarcinoma, 14.3% rectal adenocarcinoma, 14.3% anal squamous cell carcinoma), 77.8% breast cancer (81.8% ductal carcinomas, 9.1% lobular carcinomas, 9.1% invasive metaplastic carcinoma, 52.5% ER+, 42.5% PR+, 22.5% HER2+), and 27.5% of patients underwent concurrent therapies with chemotherapy. Table 1 summarizes the mean score comparisons from baseline to 6 and 12 weeks for the ETS and MSAS. We observed significantly decreased psychological symptoms at week 12 compared to baseline (p = 0.023), while physical symptoms did not change significantly (p = 0.21). Conclusions: We successfully conducted a pilot study distributing a standardized educational brochure, thus demonstrating feasibility of this intervention. Measured psychological symptoms decreased over time, while physical symptoms did not, which aligns with side effect progression from cumulative chemotherapy burden. We plan to expand standardized pt education materials to other cancer types, incorporate digital educational tools, and further explore pt education barriers. Clinical trial information: NCT04694794 .[Table: see text]
Symptom burdens in long-term survivors of gynecologic cancer receiving acupuncture care.
Authors: Daugherty Christopher K. , Hanold Kathleen J. , Hlubocky Fay J.
Published: June 2023

e24152

Background: Gynecologic cancer survivors (GCS) experience physical and emotional symptom burdens (SB) due to advanced, recurrent disease and intensive treatment often requiring supportive, complementary/integrative therapies. Yet, limited evidence exists on which specific SB require attention and intervention. This study aimed to identify demographics and SB of GCS referred for outpatient acupuncture services at a U.S. cancer center. Methods: A retrospective analysis was conducted of GCS actively receiving outpatient acupuncture services at the University of Chicago Supportive Oncology Program between March 2021 and June 2022. A brief self-reported SB assessment using a 0-10 Likert rating scale was completed at each acupuncture treatment. Socio-demographic (age, religion), disease information (stage) and SB (pain, insomnia) information was obtained from the medical record. Descriptive statistics were analyzed and paired sample t-tests evaluated SB differences prior to first and final treatment. Results: Eighty-three percent (54 of 65 referred) GCS received outpatient acupuncture care. Seventeen percent (11 of 65 referred) were unable to seek acupuncture due to disease progression leading to referral for end-of-life care (e.g. hospice, home palliative care). The mean age of GCS receiving acupuncture was 60y (range 30-81); 97% Non Hispanic, 65% White; 32% African American; 58% married; 53% with children; 65% Christian; 59% retired/on disability. Fifty percent of GCS had endometrial dx, 47% ovarian; 95% Stage IV; mean 7y since dx (range = .6-20y); 88% lacked advanced directives (e.g. DNR). Seventy percent completed at least four weekly acupuncture treatments. Prevalent SB were fatigue (94.1%), sleep disturbance (88.3%), pain (88.2%), anxiety (82.6%); and neuropathy (52.9%). On average, elevated SB mean scores were fatigue, numbness, anxiety, and hot flashes. Neuropathy was scored as the most severe (≥8 of 10). No significant improvement in SB was identified at the third treatment (p = 0.10). At the sixth session, GCS reported significantly less pain (p = 0.02). SB change was both statistically and clinically significant in 61-73% GCS at last session, except nausea. Only 0-5% of GCS reported worsening SB after acupuncture. Conclusions: Our results suggest acupuncture may aid in GCS SB control serving as a useful adjunct during cancer treatment and beyond. Early acupuncture referral may benefit GCS coping with SB during the cancer trajectory and is warranted. Future research should use a longitudinal prospective cohort design with validated SB measures.
Incidence patterns and clinical implications of venous thromboembolisms (VTE) in patients (p) with neuroendocrine tumors (NET).
Authors: Hernando Jorge , Roca Maria , Garcia-Alvarez Alejandro , Serradell Sonia , Garcia-Burillo Amparo , Casteras Anna , Molero Xavier , Merino-Casabiel Xavier , Landolfi Stefania , Blanco Laia , Navales Ignacio , Diez Iratxe , Salcedo Maria Teresa , Simo Marc , Sanchez Jose Luis , Castro Sandra , Eremiev Simeon , Alvarez Raquel , Vazquez Anna , Capdevila Jaume
Published: June 2023

e24155

Background: Venous Thromboembolisms (VTE) is a common complication in cancer patients (p) and one of the lead causes of cancer-related death. Digestive neoplasms have specific characteristics in VTE incidence and treatment. There is a lack of data regarding VTE impact in p with neuroendocrine tumors (NET). Currently few studies have addressed VTE in NET, with an estimated incidence of 7.5%. Nevertheless, there is no evidence from large datasets to address specific implications of thrombosis in NET p. In the present study, we review incidence and treatment of VTE in NET in a large unicentric cohort. Methods: Consecutive p with gastroenteropancreatic (GEP) and thoracic NET treated in our institution were reviewed to study incidence of VTE including deep vein thrombosis (DVT), pulmonary embolisms (PE) and splanchnic venous thrombosis (SVT). Information regarding clinical characteristics and VTE treatment were collected. Results: 212 p were included in the analysis (38% Female; 42% Pancreatic, 35% Small Intestine, 6.5% lung). 50p presented any kind of thrombotic event (23.5%), and 23 were directly related to TNE (10.8%). Considering 23p with TNE-related VTE (82.3% Male; 82.3% Pancreatic), main origins included: SVT 11p (47.8%) and PE 7p (30.4%). Leading cause of SVT was splenic vein thrombosis. 80.9% of VTE cases received anticoagulant therapy, most of them with low-molecular weight heparin (82.6%) and indefinitely duration (58.8%). All cases that did not started anticoagulant therapy were splenic vein thrombosis due to physician decision. Any complication related to anticoagulant therapy was described in 5p (26.3%). No cases of VTE-related death were found. Conclusions: Patients with NET have a moderate risk of VTE events. Splenic thrombosis is the most common location but need of anticoagulant therapy in those cases remains controversial. Specific studies regarding VTE in NET population are needed.
A retrospective chart review of palliative care consultation during curative-intent chemoradiation for head and neck cancer.
Authors: Rizwan Farsha , Davella Christopher , Albert Madeline , King Traci , Egleston Brian L. , Galloway Thomas James , Chwistek Marcin , Fang Carolyn Y , El-Jawahri Areej , Bauman Jessica R
Published: June 2023

e24165

Background: Head and neck cancer (HNC) treatment with chemoradiation therapy (CRT) is highly morbid. Patients develop significant symptoms including severe pain, dysphagia, and malnutrition resulting in poor quality of life (QOL), frequent hospitalizations, and high rates of depression. Although integration of palliative care (PC) teams into the care of incurable cancers has resulted in improved QOL, less is known about its integration into the care of patients receiving curative-intent treatments. We sought to characterize the use of PC during HNC CRT at a single cancer center. Methods: We performed a retrospective chart review of patients who received curative-intent CRT for HNC from 1/2008 to 1/2019 at Fox Chase Cancer Center. We excluded patients with metastatic disease or who participated in a PC intervention study. Data extracted included: demographics, comorbidities, cancer subtypes, human papilloma virus (HPV) status, inpatient admissions, feeding tube use, pain medication usage, and PC referrals throughout CRT. We used parametric and non-parametric statistics for hypothesis testing. Results: A total of 332 patients were included; median age was 60, 73% were male, 57.8% had oropharynx HNC, 10.2% had a history of chronic pain, and 18.9% had a psychiatric diagnosis. At the start of treatment, 38.5% of patients were on opioids for cancer pain or chronic pain, which increased to 90.7% of patients by the end of CRT. Six months after CRT, 30% of patients remained on opioids. 44.7% of patients required a feeding tube and 51.4% were admitted to the hospital. Despite the significant symptomatology, only 64 patients (19.2%) were referred to PC during treatment. The patients referred to PC were more likely to be younger (p=0.002), have an inpatient admission during treatment (p=0.001), a history of a psychiatric disorder (p=0.001) or substance abuse (p=0.003), and less likely to have HPV-related HNC. Conclusions: A large majority of patients receiving CRT for HNC faced significant pain with a high hospitalization rate, yet few had the expertise of PC involved in their care. Those who were referred to PC were more likely to have pre-existing substance use or chronic pain. These data provide strong rationale for the development of standardized, PC-based interventions to help with the symptomatology of HNC treatment to better serve this high needs population. [Table: see text]
Timing of specialized palliative care integration and its impact on quality of end-of-life care indicators among Latin American cancer patients.
Authors: Dias e Silva Douglas , Melo Ferreira Vanessa , Swerts Diego Belandrino , Eleoterio Giulia Nicolucci , Takahashi LIlian Tamy , Nogueira Camila Viale , de Souza Polianna Rodrigues , Moura Fernando , Araujo Sergio Eduardo Alonso , Uson Junior Pedro Luiz Serrano , Prado Bernard Lobato ,   Oncology and Hematology Department
Published: June 2023

e24168

Background: Prior studies have shown that specialized palliative care (SPC), when integrated early during the disease trajectory, improves the quality of end-of-life care among advanced cancer patients. However, those studies were conducted in large academic cancer centers in developed countries, where the availability of human and structural SPC resources is extensive. Little is known about how the timing of SPC may affect end-of-life quality care indicators in other settings of the globe. We aimed to examine the timing of SPC over a 4-year period and how it was associated with ASCO end-of-life quality care indicators. Methods: Retrospective cohort study of all adult cancer patients referred to the SPC team and who died at Hospital Israelita Albert Einstein, Sao Paulo, Brazil, between April 2017 and April 2021.Data onpatient demographics, clinical characteristics, timing of SPC integration as measured as the median interval between first SPC consult to death (SPC1-D), and ASCO end-of-life quality care indicators were retrieved. Results: Among 292 deceased cancer patients (52% female; median age = 67; 70% ECOG ≥3), the median SPC1-D interval was 24 days. There was a decrease in SPC1-D interval in the pandemic years (April 2017 through March 2018 = 27 days; April 2018 through March 2019 = 39 days; April 2019 through March 2020 = 23 days; April 2020 through April 2021 = 15 days; p = .02). 164 (56%) had an SPC1 < 30 days before death. Patients who had an SPC1 > 30 days before death were less likely to receive chemo and targeted therapy within the last 30 days of life (Table 1). Conclusions: Integration of SPC occurred late, especially during the pandemic years. Nevertheless, earlier SPC1 improved treatment aggressiveness in end-of-life. Further efforts are needed to enhance early SPC referrals in resource-limited settings.[Table: see text]
Use of medical cannabis in cancer-related symptons: A systematic review.
Authors: Sette Claudia Vaz De Melo , Schoueri Jean Henri , Cubero Daniel De Iracema Gomes , Del Giglio Auro
Published: June 2023

e24170

Background: Medical cannabis’ (MC) use is increasing due to its alleged potencial effects amongst various diseases. In this sense, there are many papers trying to demonstrate its benefits in cancer-related symptoms (CRS). However, few randomised controlled trials (RCT) were done to date. This systematic review (SR) aimed to evaluate the eficacy of MC in CRS. Methods: We performed a SR acordding to PRISMA guidelines based on PUBMED, EMBASE, LILACS and WEBScience platforms seaching for RCTs using the following terms: medical cannabis OR cannabinoids OR dronabinol OR tetrahydrocannabinol OR AND nausea OR vomiting OR chemotherapy OR cancer OR pain OR cachexia OR anorexia. We included trials from January 2010 to January 2023 that evaluated the association between MC and CRS. Results: We found 2097 abstracts, of which 304 were RCTs. After excluding the ones that did not meet the inclusion criteria, repeated articles and non-published trials, we ended up with 9 papers. Most of these studies used oral sprays combination of CBD/THC and the results are heterogeneous as displayed in table 1. Conclusions: MC may have a potencial effect in CRS, however more RCTs are needed for current literature presentes low quality evidence for its use. Up to now, there is no clear data to encourage its use.[Table: see text]
Exploring the reproductive and sexual health concerns of young adults with cancer.
Authors: Menon Surabhi , Levine Jennifer
Published: June 2023

e24176

Background: Young adults (YA) with cancer face unique challenges due to their developmental stage at the time of diagnosis/treatment. In the limited number of studies that have looked at reproductive and sexual health among YA being treated for cancer, YA expressed a need for increased communication and guidance in these areas. There is inadequate insight into the extent of sexual and reproductive concerns YA have and the substance of related counseling patients have received in the past, if any. As survivorship rates improve in this age group the need to address reproductive and sexual health as a part of comprehensive cancer care increases. Methods: This was a cross sectional study via a one time survey created on REDCap. Eligibility included diagnosis of malignancy (lymphoma, leukemia, breast cancer, or testicular cancer) between ages 18-39, less than 5 years from therapy completion. Eligible participants were identified via an i2b2 filter on Epic. Enrolled participants completed an online survey that focused on their concerns surrounding sexual health, fertility, contraception, the HPV vaccine, and any counseling they received in those areas. Questions regarding patient demographics, diagnostic, and treatment information were included. Results: The survey was completed by 23 patients (126 eligible, 52 contacted after permission given by the primary oncologist). Patients were 52% female, 73% non-Hispanic/Latino. 57% were between ages 18-24 at diagnosis and the most common cancer for females and males were lymphoma and testicular cancer respectively. 57% of patients stated they had questions about sexual activity during their cancer diagnosis and treatment, 35% recalled having a discussion with a provider. 60% of patients said cancer affected their sex life, with over 80% of those stating it was a net negative effect. 82% of patients had questions about fertility, and 87% had a discussion with a provider. 24% had questions about contraception with 43% having a discussion. 43% of patients were unsure if there was any conversation about the HPV vaccine. Conclusions: YA cancer patients seem to have many questions surrounding sexual and reproductive health. The biggest discrepancy between questions had and conversations had was specifically in the area of sexual health. Future research should delve into the content of the questions and how providers can better address sexual health in a standard manner. Most patients who had questions concerning fertility report they did have some discussion, although satisfaction varies. The majority of patients said cancer negatively affected their sex life, but it is yet to be determined if this affects overall quality of life and if providers can help. The lack of HPV vaccine counseling should be further explored.[Table: see text]
Types of work young adults perform to adjust to a cancer diagnosis and treatment.
Authors: Ghazal Lauren Victoria , Iannarino Nicholas , Cyers Josephine
Published: June 2023

e24179

Background: Patients and their caregivers perform work (i.e., demanding and arduous labor that takes resources and coordination to address) to manage their illness, relationships, and lives. A growing body of psychosocial research has investigated the communication work performed by young adults (18-39 years old at diagnosis; YAs) and their caregivers as they adjust to cancer treatment and survivorship. However, to our knowledge, no studies have examined how the four types of work identified through Theory of Illness Trajectories (i.e., everyday, illness-related, biographical, and communication) interact within cancer survivorship. Thus, the study purpose was to investigate how and why YAs describe their efforts to manage life along the cancer trajectory as work or labor. Methods: We conducted a qualitative secondary analysis leveraging three separate qualitative interview datasets that sought to describe and explain similar psychosocial aspects of the YA cancer experience. Two specific interview questions: 1) “What advice would you give to another person your age who received a similar diagnosis?” and 2) “What did you learn from your cancer experience that you wish you knew when you were diagnosed?” shaped our thematic analysis. We applied the Theory of Illness Trajectories in the open coding phase, where everyday-life work referred to recurring existing responsibilities (e.g., employment, childcare); illness work related to cancer-management tasks like taking medication and seeing physicians; biographical work involved one’s cognitive efforts to reconstruct their identity, and communication work involved the demanding use of communication to manage identities, share information, or solicit support. During axial coding, each author reviewed one-third of the data individually, making note of units that could be classified as themes related to each type of work. Results: A total of 112 participants completed qualitative interviews across the three studies. Most (71%) were female, and mean age was 26 years. Most received a diagnosis of lymphoma (33.0%), leukemia (17.9%), and breast cancer (11.6%). Data analyses are still ongoing; we are currently meeting regularly to reach consensus on our axial codes. Our final abstract will include findings from our selective coding phase, which will allow us to examine comparisons and interactions between types of work. Conclusions: Additional goals of our innovative qualitative secondary analysis are to a) to identify the most salient subtypes of biographical, illness-related, everyday, and communication work in the YA cancer context and b) to better understand how the four types of work described by theory of illness trajectories interact and whether they facilitate or hinder the performance of additional types of work.
Gynecologic oncology patients’ perception of physician empathy in the age of COVID-19.
Authors: Cohn Gavriel , Whitcomb Bradford
Published: June 2023

e24186

Background: Since the beginning of the COVID-19 pandemic there have been major changes to the medical office experience, including universal masking. Prior studies had shown that the environmental layout1, the ability of the patients to see the physician’s face2, as well as the interactions with other office staff members3, as well as the length of the patient-physician relationship4 all played into the patient’s perception of physician empathy and that this perceived. Because establishing care during the pandemic would undercut many of these known factors, it was hypothesized that those who established care after the onset of the pandemic would have lower scores on the Jefferson scale of Physician empathy (JSPE) and European Quality of life survey (EQ-5D™). Methods: Patients of the Carole and Ray Neag Cancer Center department of Gynecologic Oncology at UConn Health were surveys at the time of their appointments. Sampling occurred between June and November of 2022. Surveys collected demographic information including age, stage of cancer, and number of visits since the onset of the pandemic in March 2020; the JSPE along with questions directly related to care during the pandemic scored the same way; the EQ-5D™; and a checkable list of changes noted in the office. The results of the “Pre-COVID” and “Post-COVID” cohorts were compared using a two-group t-test for statistical significance. An n of 30 per cohort was needed for a power of > 80%. Results: Results showed that patients who had established care prior to the pandemic (n = 29) were more likely to be seen while in remission while those who established care after the onset of the pandemic (n = 33) were more likely to be seen for postoperative surgical care or an active cancer. Patients who established care prior to the pandemic had statistically significantly lower scores on the JSPE than those who did not (6.08 +/- 2.00 vs 6.73 +/- 0.71 p = < 0.001). However, individuals who established care prior to the pandemic had statistically higher qualities of life as measured by the EQ-5D™ compared to those who established care after the onset of the pandemic (4.57 +/- 0.72 vs 4.22 +/- 0.85 p = < 0.001). There was no statistically significant difference in the number of changes notes (4.483 +/- 1.57 vs. 5.09 +/- 1.38 p = 0.189). Conclusions: While statistically significant differences between the cohorts were found, the overlapping standard deviations, the fact that the JSPE and EQ-5D™ went in separate directions, and the generally favorable responses lead to the conclusion that the differences were not clinically significant. This means that, contrary to research conducted prior to widespread masking and the COVID-19 pandemic, providers are still able to be perceived as empathetic and provide quality care to their patients despite the changes that have taken place in the medical office setting since the onset of the pandemic.
Patient expectations and understanding of treatment intent in Belize.
Authors: Dickerson James , Wong Wayne , Ohanian Alec , Habet Marta , Bernard Margaret , Huang Franklin W. , Yacab Ramoncito Argenes
Published: June 2023

e24188

Background: Discordance between patient understanding and physician recorded treatment intent is well documented in high income countries. A large fraction of patients report their palliative intent therapy is curative. We sought to find the discordance rate between patient and physician reported intent in Belize, a low- and middle-income country (LMIC) with a single public oncology clinic, founded in 2018, staffed by a single bilingual medical oncologist who is undertaking additional training in palliative care. In 2022, we surveyed established patients on chemotherapy to assess their understanding of treatment purpose. Methods: Approval was obtained at the Karl Heusner Memorial Hospital and the University of Rochester IRB prior to the study. Between February and March 2022, patients who consented were given a 21-question survey. Here we report on one portion of this survey. Patients with both patient and physician reported data were compared with a McNamar's exact test; a pre-specified exact logistic regression was run to examine potential predictors of patient/provider discordance (age, race, number of days from first chemotherapy to survey administration, patient's primary language). A p-value of 0.05 was used for significance. Results: 29 surveyed patients had both physician- and patient-reported treatment intent; surveys were administered a median of 42 days after first chemotherapy (IQR 26 – 116). 61% (18 of 29) of the sample was on palliative intent treatment. Median age was 51 (IQR 43 – 62) and cancer types were as follows: 45% breast, 24% GI, 24% gynecological, 3.4% head/neck, 3.4% lymphoma. 97% agreed their doctor spoke medical language they understand and 90% agreed they had enough information about their treatment. 31% mis-classified their treatment intent (p = 0.004). All 9 patients who mis-classified stated their palliative intent treatment was curative; this was 50% (9 of 18) of the palliative intent patients. We found no relationship between patient/provider discordance and age, race, number of days from first chemotherapy to survey administration, or patient’s primary language. Conclusions: We surveyed cancer patients in Belize and found that half of the patients on palliative intent therapy thought their treatment was curative. Despite this gap in understanding, 97% reported they understood the medical language being spoken and 90% of the patients agreed that they had good knowledge of their treatment. The amount of discordance described here is similar to reports in high income countries. Most palliative care, and palliative care research, is performed in high income settings. Implementation research with the aim of reducing physician/patient discordance in high-income countries should consider design elements that allow for adaptation to LMICs.
Do Chinese/Chinese-American patients prefer indirect communication methods?
Authors: Galkin Maria , Lu Weiran , Vesel Tamara
Published: June 2023

e24195

Background: Cancer care requires high quality, patient-centered communication. Existing studies of communication preferences of Chinese/Chinese-American pts suggested that they prefer an indirect approach to bad news. We administered the Measure of Patient Preferences (MPP) to pts at our cancer center, many of whom identify as Chinese or Chinese-American. The MPP is a survey comprised of 46 communication-related statements patients (pts) rate on the Likert scale centered on bad news delivery, published by Parker et al in 2001. Methods: The MPP was used with the original author’s permission. Pts were approached in private settings after screening through the EMR. All survey items, including demographic data, were optional. Pts self-identified as Chinese. Forms were available in English, simplified and traditional Chinese. Pts could complete the survey on paper, online, or return by mail. The first statistical analysis found means and medians of data to discover highest and lowest rated communication aspects. Results: Among 185 pts, 52% were women. 9% identified as Chinese (10% total Asian), 73% were white, 17% were black, Latino, other or did not provide data. 29% had a high school education or less, 28% had attended some college, 38% had a college education or higher (data missing for 5%). 57% of pts were older than 65. Malignancies included 18% hematologic, 16% ENT, 13% gynecologic, 10% lymphomas, 9% breast, 8% lung (the rest were comprised of GU, GI, skin, other, and pts who did not provide data). The top rated measures, including some of “directness,” are listed below. Scale was as follows: 1. Not important; 2. Optional; 3. Important; 4. Very important; 5. Essential. The lowest rated measures were “The doctor holding my hand or touching my arm while telling me the news” (2.22 all, 2.5 Chinese) and “My doctor helps me figure out how to tell my family and friends about the cancer” (2.82 all, 3.17 Chinese). Conclusions: Pts placed high value on having doctors tell them the best treatment and having their questions answered. The “directness” preferences between all versus Chinese pts were numerically very similar, challenging existing knowledge. Further analysis and studies are needed.[Table: see text]
Feasibility trial of child care as a therapeutic intervention.
Authors: Singh Jasneet , Lopresti Mary Lorraine , Grigelevich Janine , Dizon Don S. , Fenton Mary Anne
Published: June 2023

e24196

Background: The incidence rate of cancer among young adults (ages 20-44) has steadily increased over the past decade. Among them, approximately 18% are parents within two years of initial diagnosis. Work as part of our Young Women Surviving support group identified childcare support as an unmet need. We therefore sought to determine the impact of childcare provision on the timeliness of care among young women undergoing chemotherapy for cancer. Methods: We conducted a pilot feasibility study that enrolled a convenience sample inclusive of parents with histologically confirmed invasive breast or gynecologic cancer receiving system chemotherapy and were caring for children 16 years or younger. Following consent, funds were reimbursed for costs related to their preferred childcare resource, including for travel and infusion time. Therapy assessments and an abridged version of the NCCN Distress Thermometer (score ranging from 0-10 with 0 indicating no distress) were administered at each infusion appointment. Feasibility was measured by acceptance of childcare services by > 25% of patients identified as eligible. Results: This study was offered to 26 eligible patients, of which 23 enrolled (88.5%) and 20 have follow-up data. Among study volunteers, 80% were white, 15% were black; Five percent identified as Hispanic or Latino. The median age was 39 years old (range, 31 to 79). The majority of patients (85%) had breast malignancy, while the remaining 15% had gynecological cancers. The median number of treatment events for which babysitting services were paid for were 6 (range, 2-18). Of 19 patients with distress scores, 4 (21%) reported childcare as a stress for them. The median distress score decreased over time, from 5 at first treatment event to a median score of 3 at the eighth event. All participants who completed end of study surveys (16 patients) reported they “agree” or “strongly agree” with the statements “I would participate in child care again” and “Babysitting allowed you to get to your treatment on time.” Over the duration of study, 95% of this cohort did not have any delays in their cancer-directed therapy due to childcare. Conclusions: This is early evidence to suggest providing childcare to patients who are also undergoing chemotherapy is feasible and may be beneficial in improving impact on cancer outcomes and psychological distress. Further studies should include a comparator arm to better clarify the significant of this supportive measure. It is important to continue investigating the impact of supportive services on the quality of life and of care for this unique cohort.
Creating patient-friendly informed consent form (ICF): Insights from global oncology patient insights panels (GOPIPs).
Authors: Aubel Dawn , Ciupek Andrew , Olshan Sydney , Pemberton-Whiteley Zack , Stunt Ali , Davis Kristen , Piggin Maria , Saxton M Claire , Olshan Anne , Salamakha Alexey , Cardoso Fatima , Mason Ginny
Published: June 2023

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Background: The informed consent form (ICF) provides patients with information to facilitate an informed decision about participation in a clinical trial. Legal and regulatory requirements, professional jargon and technical terms make ICFs long and complicated, creating barriers for patients to understand the participation requirements, which may lead to negative impact on recruitment and increased drop-out rates. Methods: Patient advocates with relevant knowledge of patient experiences in their respective disease areas were invited to review, edit, and provide recommendations for improving draft ICFs for company clinical trials to facilitate better understanding. These advocates are members of the Global Oncology Patient Insight Panels (GOPIPs), contracting with the company to provide the patient perspective along the clinical development continuum. The advocates received draft ICFs and completed a questionnaire regarding its readability, content, and formatting, or provided open-ended feedback. Researchers interviewed advocates to elicit in-depth responses and recommendations for improvement. A qualitative analysis was performed on all data collected to identify primary themes, which were incorporated into an internal guidance for clinical development teams, “Tips for Creating Patient-friendly ICFs: Insights from Global Oncology Patient Insights Panels (GOPIPs) 2018-2022.” Results: 36 draft ICFs for clinical trials were reviewed by 47 advocates in 13 hematology/oncology disease areas and 14 countries between 2018 and 2022. Qualitative analysis identified 5 primary themes: 1) Create easy-to-read documents through simplifying words and using visuals; 2) clearly communicate participation requirements in patient friendly terms, including an executive summary or table of logistical, financial, and patient reported outcomes requirements; 3) provide transparency: background on the treatment and personnel involved in study, explain the study’s privacy policies and what happens if the patient is no longer eligible for the trial; 4) provide supplemental information materials to aid understanding; 5) provide instructions for the investigator/trial team presenting the patient with the ICF. Conclusions: Feedback provided aligns with a recent proposal by the FDA to change existing regulations on informed consent to “facilitate a prospective [trial participant’s] decision about whether to participate in the research.” Findings from this analysis of patient advocate insights will be used to update the organization’s ICF template with improved comprehensibility of the form.
Cancer survivorship: Patient experiences on early phase trials during the COVID-19 pandemic—Qualitative study from an Australian Phase 1 unit.
Authors: Zdanska Oksana , Joshua Anthony M. , Liu Jia (Jenny) , Zdansky Pavel , Stanners Melinda , Rogers Cath
Published: June 2023

e24202

Background: The COVID-19 pandemic significantly disrupted global access to cancer care. Patient access to early phase trials during COVID-19 was maintained at our major tertiary Phase 1 unit using split teams, remote monitoring, direct to patient drug delivery and telehealth1. While there is substantial research focused on trial access, patient experiences of early phase treatment during the pandemic have not been documented. This research aims to identify early phase trial patients’ needs and provide insight into patients’ journey while receiving novel therapy in the midst of the Australian lockdown. Methods: This qualitative study recruited early phase trial participants with advanced /metastatic cancer treated at St Vincent’s Hospital, Sydney between 2020-2022 whilst the government-mandated lockdown was effective. Participants were audio/video recorded during their interview using a semi-structured approach. Thematic analysis was used to analyse patient stories and identify unmet needs. Analyses were performed using NVivo. Results: Nine clinical trial participants (five females, four males; five new trial participants, four known exceptional responders) consented and completed the in-depth interview (1-2.5 hours). Participants reported that COVID-19 created additional burden at a time of vulnerability, including challenging travel logistics, such as frequent travel exemption requests or need to relocate to access treatment, worsening anxiety and financial toxicity. COVID-19 lockdown induced separation from family abroad, touch deprivation and reduced psychological support for those with advanced cancer needing support, but provided more flexible work arrangements, allowing patients to work from home whilst on treatment. Conclusions: This study revealed unique social, psychological, logistical and financial challenges for cancer patients accessing early phase trials during the COVID-19 pandemic. Development of meaningful patient centred resources and supportive care interventions is needed to assist trial participants. 1N Aggarwal et al (2022), Impact of COVID-19 on early phase clinical trials recruitment and treatment in a major metropolitan Phase 1 Unit, Poster Abstracts. Asia-Pac J Clin Oncol, 18: 33-51. https://doi.org/10.1111/ajco.13856.
The impact of COVID-19 on a stand-alone cancer support community.
Authors: Mitchell Carley , Zhong Jeffrey , Apisdorf Cheryl , Bennett Beth , Wang Qian , Hsu Melinda Laine
Published: June 2023

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Background: The COVID-19 pandemic altered cancer care delivery, notably through a rise in telemedicine. Patients of racial minority, low income, or older age are less likely to engage in virtual platforms. Support services are effective ways to combat negative effects of both a cancer diagnosis and a pandemic. However, research is limited regarding the impact of COVID-19 on support-based organizations. We aimed to identify variations in participant demographics and resource utilization at The Gathering Place (TGP), a cancer support community, prior to and during the COVID-19 pandemic, as the platform of program delivery shifted from all in person (IP), to virtual (V), to a hybrid (H) in person/virtual setting. Methods: Deidentified, retrospective data was gathered from three distinct six month time periods: 01/01-06/30/2019 (IP), 01/01-06/30/2021 (V) and 01/01-06/30/2022 (H). Participant data including participant type (diagnosed with cancer or affected by cancer), age, sex, race, residential zip code (translated to projected household income), cancer type and programs utilized were collected and analyzed. Baseline demographics were compared among IP, V and H platforms using the Wilcoxon test (for age) and chi-square tests for other variables. Statistical significance was set at two-sided P values < 0.05. Results: Among participants with cancer, there was a greater percentage of females and racially white vs. black individuals. Sex, race and projected income did not change significantly over time. However, age significantly decreased from IP to V/H settings. The percentage of participants engaging in support, exercise, art and mind/body programs significantly decreased from IP to V/H settings, whereas educational engagement increased. Similar results were recognized among participants affected by cancer. Conclusions: The change in median age at TGP as a result of the COVID-19 pandemic, and subsequent shift in program delivery, mirrors the disparity in telemedicine utilization among the older population. While race and projected median household income did not change over time, the 2019 data suggests that participation is already highly skewed towards white and higher income participants compared to the local demographic distribution. Moving from IP to V/H delivery, program utilization with more interpersonal camaraderie and social bonding decreased, while programs involving less of these qualities remained the same or increased over time. This data highlights important gaps in utilization and underscores the gravity of in person interaction that has been altered by the COVID-19 pandemic. [Table: see text]
Impact of death anxiety (DA) on the psychological well-being and survival of patients with advanced cancer (ACP) in phase I trials and their spousal caregivers (SC).
Authors: Hlubocky Fay J. , Cella David , Sher Tamara , Daugherty Christopher K.
Published: June 2023

e24213

Background: ACP and their SC experience psychological distress living with future uncertainty regarding their cancer. Yet, little is known how existential DA adversely impacts the psychological well-being and overall survival of ACP participating in Phase I trials and their SC. Methods: A prospective study of ACP enrolling in phase I trials and their SC were assessed at baseline (T1) and one month (T2) using quantitative symptom measures including: depression (CES-D), state anxiety (STAI-S), quality of life/qol (FACIT-Pal), and global health (SF-36). Semi-structured interviews evaluated DA: suffering; meaning, and worry re death. Results: To date, 158 participants (79 Phase I ACP and 79 SC) have been separately interviewed at T1 and T2. For the total population: median age 62 (28-79y); 50% male; 100% married; 89% Ca; 69% > HS educ; 59% GI dx; ACP median survival 8.2 month (.51-18.8) 53% income < $65,000 yr. At T1, 83% of ACP experienced worry re death, and 77% reported suffering. For SC at T1, 75% reported worry re ACP death; 88% worried re own death; and 85% reported experiencing suffering and 84% lost meaning during the ACP illness. For both ACP and SC, rates remained consistent for both ACP and SC. At T2, ACP with worry re death had higher STAI-S (32±11 v. 28±9, p = 0.04) and CES-D scores (12±10 v. 11±10, p = 0.03). SC with self-reported suffering had higher STAI-S anxiety (38±15 v. 34±12, p = 0.02) at T2. Regression analyses revealed ACP with worry had worsening FACIT-Pal QOL over time. Also, SC with suffering at T2 was negatively associated with SF-36 scores. Regarding survival, ACP with DA had shorter survival compared to ACP without DA (4.4 v. 6.9 months, p = 0.02). Conclusions: Phase I ACP and SC report worry re death and suffering negatively impacting their psychological well-being and survival. Supportive couple-based, dyadic psychological interventions for ACP-SC designed to address DA coping are needed.