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1.
BMJ Open Gastroenterol ; 11(1)2024 Jul 05.
Article in English | MEDLINE | ID: mdl-38969363

ABSTRACT

BACKGROUND: Pancreatic cystic neoplasms (PCN) are considered premalignant conditions to pancreatic adenocarcinoma with varying degrees of cancerous potential. Management for individuals who do not require surgical treatment involves surveillance to assess for cancerous progression. Little is known about patients' experience and the impact of living with surveillance for these lesions. AIMS: To explore the experiences of patients living with surveillance for PCNs. METHODS: Semi-structured qualitative interviews were conducted with patients under surveillance for pancreatic cystic neoplasms in the UK. Age, gender, time from surveillance and surveillance method were used to purposively sample the patient group. Data were analysed using reflexive thematic analysis. RESULTS: A PCN diagnosis is incidental and unexpected and for some, the beginning of a disruptive experience. How patients make sense of their PCN diagnosis is influenced by their existing understanding of pancreatic cancer, explanations from clinicians and the presence of coexisting health concerns. A lack of understanding of the diagnosis and its meaning for their future led to an overarching theme of uncertainty for the PCN population. Surveillance for PCN could be seen as a reminder of fears of PCN and cancer, or as an opportunity for reassurance. CONCLUSIONS: Currently, individuals living with surveillance for PCNs experience uncertainty with a lack of support in making sense of a prognostically uncertain diagnosis with no immediate treatment. More research is needed to identify the needs of this population to make improvements to patient care and reduce negative experiences.


Subject(s)
Pancreatic Neoplasms , Qualitative Research , Humans , Male , Female , Pancreatic Neoplasms/psychology , Pancreatic Neoplasms/diagnosis , Pancreatic Neoplasms/epidemiology , Middle Aged , Aged , United Kingdom/epidemiology , Interviews as Topic , Adult , Watchful Waiting , Uncertainty , Aged, 80 and over , Population Surveillance/methods , Precancerous Conditions/psychology , Precancerous Conditions/diagnosis , Precancerous Conditions/pathology
2.
Support Care Cancer ; 32(7): 466, 2024 Jun 27.
Article in English | MEDLINE | ID: mdl-38935156

ABSTRACT

PURPOSE: Parenteral nutrition (PN) can be an effective treatment to improve the nutritional status of patients with pancreatic cancer, but the effects of PN on quality of life (QoL) are still understudied. Therefore, we aimed at investigating whether the best supportive nutritional care (BSNC) in combination with PN at home compared to BSNC alone changed QoL in patients with advanced pancreatic cancer undergoing chemotherapy over a period of 7 weeks. METHODS: n = 12 patients in the PANUSCO study received nutritional counseling only (control group (CG)) and n = 9 patients were also given supportive PN (intervention group (IG)). The primary endpoint was the change of QoL (EORTC-QLQ-C30 and QLQ-PAN26) over 7 weeks between the groups. RESULTS: There was a significant worsening in social functioning in IG (p = 0.031) and a significant difference between groups in change of social functioning (p = 0.020). In all other domains of QoL, there was no significant difference between groups. Within groups, there was a significant improvement in the domain weight loss in IG (p = 0.031), showing that patients were less worried about their weight being too low. Furthermore, there was a significant difference in the change of BW over time between groups (p < 0.001) with IG showing an increase (p = 0.004) and CG showing no change (p = 0.578). CONCLUSION: The administration of PN had in one of five domains negative consequences on QoL. The decision to administer PN should always be made individually and together with the patient, and the impact on QoL should be included in the decision to administer PN.


Subject(s)
Pancreatic Neoplasms , Parenteral Nutrition , Quality of Life , Humans , Pancreatic Neoplasms/therapy , Pancreatic Neoplasms/psychology , Male , Female , Middle Aged , Aged , Parenteral Nutrition/methods , Nutritional Support/methods , Nutritional Status
3.
Fam Cancer ; 23(3): 255-265, 2024 Aug.
Article in English | MEDLINE | ID: mdl-38822936

ABSTRACT

Individuals with a germline CDKN2A pathogenic variant (PV) have a highly increased life time risk of melanoma and pancreatic cancer. This cross-sectional study assessed the attitudes among toward genetic testing, family planning, and preimplantation genetic testing (PGT) in confirmed CDKN2A PV carriers and individuals with a 50% risk of the PV (at-risk carriers) using of a one-time questionnaire.A total of 537 individuals were screened for eligibility, of whom 208 of 366 (57%) confirmed carriers (56% female, median age 54 years [IQR 46-63]) and 39 of 171 (23%) at-risk carriers (59% female, median age of 26 years [IQR 22-32]) participated in the study. Primary motivations for genetic testing were to gain control over their personal and children's cancer risk, as well as increasing cancer surveillance practices. In contrast, concerns about obtaining a mortgage and life insurance were frequently cited as reasons for postponing genetic testing. Family planning decisions remained largely unaffected in both confirmed and at-risk carriers; however, the majority of confirmed carriers were still unaware of their familial or personal cancer risk when starting a family. More than 60% of the participants were unfamiliar with PGT and only a minority (19% of confirmed carriers and 10% of at-risk carriers) would be open to considering PGT as a reproductive option. This study found different attitudes toward genetic testing, family planning, and PGT among individuals affected by the CDKN2A PV. Understanding these different attitudes can help clinicians to address the complexities surrounding these issues, especially for younger individuals facing difficult decisions about the timing of genetic testing, family planning, and the potential use of assisted reproductive options.


Subject(s)
Cyclin-Dependent Kinase Inhibitor p16 , Family Planning Services , Genetic Predisposition to Disease , Genetic Testing , Germ-Line Mutation , Preimplantation Diagnosis , Humans , Female , Middle Aged , Adult , Male , Cross-Sectional Studies , Preimplantation Diagnosis/psychology , Genetic Predisposition to Disease/psychology , Cyclin-Dependent Kinase Inhibitor p16/genetics , Young Adult , Melanoma/genetics , Melanoma/psychology , Health Knowledge, Attitudes, Practice , Surveys and Questionnaires , Pancreatic Neoplasms/genetics , Pancreatic Neoplasms/psychology , Cyclin-Dependent Kinase Inhibitor p18/genetics
4.
Gut Liver ; 18(4): 756-760, 2024 Jul 15.
Article in English | MEDLINE | ID: mdl-38938175

ABSTRACT

Background/Aims: The public fear of pancreatic diseases including pancreatic cancer (PC) appears to be growing. The aims of this study were to evaluate the causes of fear of pancreatic diseases and assess clinical outcomes of such individuals. Methods: This was a retrospective study of 249 individuals who visited the Pancreatobiliary Diseases Center at Ewha Womans University Seoul Hospital due to the fear of pancreatic diseases between January 2019 and August 2021. Those referred from other departments or external medical facilities were excluded. Collected data included demographic details, comorbidities, causes of fear of pancreatic diseases, and the presence of pancreatic lesions in imaging studies. Results: The median age was 55 years (range, 22 to 82 years). One hundred eleven subjects (44.6%) were male. The causes of fear of pancreatic diseases were abdominal pain (n=144, 57.8%), back pain (n=114, 45.8%), body weight change (n=35, 14.1%), family history of pancreatic diseases (n=32, 12.9%), and others (n=39, 15.7%). Within the group with family history of pancreatic diseases, 25 subjects had a first-degree relative with PC. Of the 200 subjects who underwent imaging, there was no evidence of pancreatic diseases in 182 (91.0%). Pancreatic lesions identified were cystic lesions (n=15, 7.5%), non-specific calcification (n=1, 0.5%), lipoma (n=1, 0.5%), and solid tumor (n=1, 0.5%), later diagnosed as unresectable PC. Conclusions: Abdominal pain and back pain were the major causes of fear of pancreatic diseases. The prevalence of PC among those who underwent imaging was 0.5%. Such characteristics should be considered when consulting individuals with fear of pancreatic diseases.


Subject(s)
Fear , Pancreatic Diseases , Pancreatic Neoplasms , Humans , Male , Female , Middle Aged , Retrospective Studies , Adult , Aged , Pancreatic Diseases/psychology , Pancreatic Diseases/epidemiology , Pancreatic Diseases/complications , Fear/psychology , Aged, 80 and over , Pancreatic Neoplasms/psychology , Pancreatic Neoplasms/complications , Republic of Korea/epidemiology , Young Adult , Abdominal Pain/etiology , Abdominal Pain/psychology
5.
J Surg Oncol ; 130(1): 117-124, 2024 Jul.
Article in English | MEDLINE | ID: mdl-38798277

ABSTRACT

BACKGROUND AND OBJECTIVES: Patients with pancreatic and gastroesophageal (PGE) cancers experience high symptom burden, but patient experience throughout multimodality treatment remains unclear. We aimed to delineate the experience and symptom burden of patients throughout their perioperative course. METHODS: Qualitative interviews were performed with 17 surgical patients with PGE cancer. Interview transcripts were analyzed and symptoms were ranked by frequency. An expert panel assessed the relevance of these symptom inventory items. RESULTS: Of the 17 patients included, 35% (n = 6) underwent gastrectomy, 30% (n = 5) underwent esophagectomy, and 35% (n = 6) underwent pancreatectomy; 76% (n = 13) received neoadjuvant systemic chemotherapy and/or chemoradiation. Overall, 32 symptoms were reported, and 19 were reported by over 20% of patients. An expert panel rated nine symptoms to be relevant or very relevant to PGE surgical patients. These symptoms (difficulty swallowing, heartburn/reflux, diarrhea, constipation, flushing/sweating, stomach feeling full, malaise, dizziness, or feeling cold) were added to the core MD Anderson Symptom Inventory (MDASI) if they were commonly reported or reached a threshold relevancy score. CONCLUSIONS: In this qualitative study, we developed a provisional symptom inventory for patients undergoing surgery for PGE cancer. This symptom inventory module of the MDASI for PGE surgical patients will be psychometrically tested for validity and reliability.


Subject(s)
Esophagectomy , Patient Reported Outcome Measures , Qualitative Research , Humans , Male , Female , Middle Aged , Aged , Esophageal Neoplasms/surgery , Esophageal Neoplasms/therapy , Esophageal Neoplasms/psychology , Pancreatic Neoplasms/surgery , Pancreatic Neoplasms/psychology , Pancreatic Neoplasms/therapy , Gastrectomy , Stomach Neoplasms/surgery , Stomach Neoplasms/therapy , Stomach Neoplasms/psychology , Stomach Neoplasms/pathology , Adult , Interviews as Topic , Pancreatectomy , Prognosis
6.
Gastroenterology ; 166(5): 872-885.e2, 2024 05.
Article in English | MEDLINE | ID: mdl-38320723

ABSTRACT

BACKGROUND & AIMS: Genetic testing uptake for cancer susceptibility in family members of patients with cancer is suboptimal. Among relatives of patients with pancreatic ductal adenocarcinoma (PDAC), The GENetic Education, Risk Assessment, and TEsting (GENERATE) study evaluated 2 online genetic education/testing delivery models and their impact on patient-reported psychological outcomes. METHODS: Eligible participants had ≥1 first-degree relative with PDAC, or ≥1 first-/second-degree relative with PDAC with a known pathogenic germline variant in 1 of 13 PDAC predisposition genes. Participants were randomized by family, between May 8, 2019, and June 1, 2021. Arm 1 participants underwent a remote interactive telemedicine session and online genetic education. Arm 2 participants were offered online genetic education only. All participants were offered germline testing. The primary outcome was genetic testing uptake, compared by permutation tests and mixed-effects logistic regression models. We hypothesized that Arm 1 participants would have a higher genetic testing uptake than Arm 2. Validated surveys were administered to assess patient-reported anxiety, depression, and cancer worry at baseline and 3 months postintervention. RESULTS: A total of 424 families were randomized, including 601 participants (n = 296 Arm 1; n = 305 Arm 2), 90% of whom completed genetic testing (Arm 1 [87%]; Arm 2 [93%], P = .014). Arm 1 participants were significantly less likely to complete genetic testing compared with Arm 2 participants (adjusted ratio [Arm1/Arm2] 0.90, 95% confidence interval 0.78-0.98). Among participants who completed patient-reported psychological outcomes questionnaires (Arm 1 [n = 194]; Arm 2 [n = 206]), the intervention did not affect mean anxiety, depression, or cancer worry scores. CONCLUSIONS: Remote genetic education and testing can be a successful and complementary option for delivering genetics care. (Clinicaltrials.gov, number NCT03762590).


Subject(s)
Carcinoma, Pancreatic Ductal , Genetic Predisposition to Disease , Genetic Testing , Pancreatic Neoplasms , Patient Reported Outcome Measures , Telemedicine , Humans , Pancreatic Neoplasms/genetics , Pancreatic Neoplasms/psychology , Pancreatic Neoplasms/diagnosis , Male , Female , Middle Aged , Carcinoma, Pancreatic Ductal/genetics , Carcinoma, Pancreatic Ductal/psychology , Carcinoma, Pancreatic Ductal/diagnosis , Carcinoma, Pancreatic Ductal/therapy , Genetic Predisposition to Disease/psychology , Risk Assessment , Aged , Anxiety/psychology , Anxiety/diagnosis , Anxiety/etiology , Adult , Depression/diagnosis , Depression/genetics , Depression/psychology , Genetic Counseling/psychology , Germ-Line Mutation , Family/psychology
7.
HPB (Oxford) ; 26(5): 648-655, 2024 May.
Article in English | MEDLINE | ID: mdl-38350737

ABSTRACT

BACKGROUND: The temporal evolution of HRQoL and the importance of other PROs to patients, following resection for pancreatic and peripancreatic malignancy remains unexplored. METHODS: Patients undergoing pancreatic resection between 2021 and 2022 were enrolled from 2 UK HPB centres. Patients completed the EORTC QLQ-C30, QLQ-PAN26 tools and rated 56 PROs preoperatively (T1), at discharge (T2), 6-weeks (T3), 3-months (T4) and 6-months (T5) postoperatively. ANOVA followed by post-hoc analysis was used to examine patterns in HRQoL through time. Multivariable ANOVA was used to identify impact of clinical factors on HRQoL. RESULTS: 63 patients were recruited [median age, 72 (IQR 41-85); 39/63 male]. Physical functioning declined from 70.4 (26.2) at T1 to 53.5 (20.9) at T2 (p = 0.016). Global QoL score increased significantly from 41.0 (23.0) at T2 to 60.0 (26.1) at T5 (p = 0.007), as did role functioning [21.1 (27.9) at T2 to 59.4 (32.8) at T5, p < 0.001]. Chemotherapy status and the postoperative complications did not significantly change HRQoL. General QoL and health were the only PROs rated as 'very important' (scores 7-9) by more than 80 % of participants at five time-points. CONCLUSION: Recuperation of HRQoL measures is seen at 6-months postoperative and was not affected by chemotherapy or postoperative complications. Notably, PROs important to patients varied over time.


Subject(s)
Pancreatectomy , Pancreatic Neoplasms , Quality of Life , Humans , Male , Pancreatic Neoplasms/surgery , Pancreatic Neoplasms/psychology , Middle Aged , Female , Aged , Prospective Studies , Adult , Aged, 80 and over , Time Factors , Treatment Outcome , Patient Reported Outcome Measures , United Kingdom
8.
Front Endocrinol (Lausanne) ; 13: 947998, 2022.
Article in English | MEDLINE | ID: mdl-36465662

ABSTRACT

An increased incidence of gastroenteropancreatic neuroendocrine tumors (GEP-NETs) has been reported in many countries. However, the prevalence and impact factors of psychological distress and resilience in patients with GEP-NETs are unclear. We recruited 200 patients with GEP-NETs to assess psychological distress and resilience. Measures comprised the Distress Thermometer, the Hospital Anxiety and Depression Scale, Connor-Davidson Resilience scale and Medical Coping Modes Questionnaire. Our results found that the prevalence of distress, anxiety, depression and low resilience were 31.5%, 31%, 17.8%, and 25.9%, respectively. Female patients were more likely to be distressed, as were those with NET Grade 1, were partly aware of diagnosis, and had known the diagnosis less than 3 months. Distress positively correlated with acceptance-resignation, and resilience positively correlated with confrontation and avoidance. Resilience negatively correlated with psychological distress. Patients coping disease with acceptance-resignation had higher odds of anxiety, depression, and low resilience. Our findings indicate that psychological distress and low resilience were common in patients with GEP-NETs. This suggests a need to integrate psychosocial domain into GEP-NETs clinical practice.


Subject(s)
Neuroendocrine Tumors , Psychological Distress , Resilience, Psychological , Female , Humans , Intestinal Neoplasms/psychology , Neuroendocrine Tumors/psychology , Pancreatic Neoplasms/psychology
9.
HPB (Oxford) ; 24(8): 1223-1237, 2022 08.
Article in English | MEDLINE | ID: mdl-35304039

ABSTRACT

BACKGROUND: Surgery for patients with pancreatic cancer carries a high risk of major post-operative complications and only marginally improves overall survival. This review aims to assess the impact of surgical resection on health-related quality of life (HRQOL) of pancreatic cancer patients. METHODS: A systematic review of the literature was performed according to the PRISMA guidelines. All studies assessing QOL using validated questionnaires in pancreatic cancer patients undergoing surgical resection were included. RESULTS: Twenty-two studies were assessed. Patients reported a decrease in physical, social and global scales within the first 3 months after surgery. These values showed improvement and were comparable to baseline values by 6 months. Recovery in emotional functioning towards baseline figures was demonstrated in the first 3 months post-operatively. Symptom scales including pain, fatigue and diarrhoea deteriorated after surgery, but reverted to baseline after 3-6 months. CONCLUSIONS: Surgical resection for pancreatic cancer has short-term negative impact on QOL. In the longer term, this will improve and eventually recover to baseline values after 6 months. Knowledge on the impact of surgery on QOL of pancreatic cancer patients is necessary to facilitate decision-making and tailoring of surgical techniques to the individual patient.


Subject(s)
Pancreatic Neoplasms , Quality of Life , Humans , Pancreatic Neoplasms/psychology , Pancreatic Neoplasms/surgery , Prospective Studies , Surveys and Questionnaires , Pancreatic Neoplasms
10.
Palliat Support Care ; 20(4): 527-534, 2022 08.
Article in English | MEDLINE | ID: mdl-34593073

ABSTRACT

OBJECTIVES: The purpose of this feasibility study was to examine the impacts of a peer discussion group intervention called "the pancreatobiliary cancer salon" on psychological distress among patients with pancreatobiliary cancer and their caregivers. METHODS: We recruited patients with pancreatic or biliary tract cancer and their caregivers. We conducted a within-group pre-post comparison study. Participants were grouped by the type of cancer and treatment. Each group consisted of four to five patients or caregivers. Hospital staff members facilitated group discussions where participants freely talked for 1 h. We evaluated participants' psychological condition using the Profile of Mood States (POMS) and their impressions of the pancreatobiliary cancer salon. RESULTS: We analyzed data from 42 patients and 27 caregivers who joined the salon for the first time. Thirty-five patients (83.3%) had pancreatic cancer. Thirty-one patients (71.4%) had unresectable pancreatobiliary cancer and 14 patients (33.3%) were being treated with second-line or third-line chemotherapy at the time of the survey. Twenty-two patients (52.4%) participated in the salon within 6 months after diagnosis. Most participating caregivers were the patient's spouse/partner (51.9%) or child (34.6%). Both patients and caregivers experienced high levels of satisfaction with the pancreatobiliary cancer salon. Both patients and caregivers had significantly lower psychological distress as assessed by POMS after the salon. SIGNIFICANCE OF RESULTS: A peer discussion group intervention might be well-received and has potential to benefit for patients with pancreatobiliary cancer and their caregivers.


Subject(s)
Gastrointestinal Neoplasms , Pancreatic Neoplasms , Caregivers/psychology , Feasibility Studies , Humans , Pancreatic Neoplasms/complications , Pancreatic Neoplasms/psychology , Pancreatic Neoplasms/therapy , Quality of Life/psychology
11.
Surgery ; 171(2): 459-466, 2022 02.
Article in English | MEDLINE | ID: mdl-34563351

ABSTRACT

BACKGROUND: The timing and the dose of Advanced Care Planning in patients with pancreatic ductal adenocarcinoma undergoing curative-intent resection are generally dictated by the surgeon performing the operation. METHODS: A qualitative investigation using 1:1 interviews with 40 open-ended questions was conducted with a convenience sample of 10 high-volume pancreatic surgeons from across the country. The grounded theory approach was used for data analysis. RESULTS: A total of 10 interviews were conducted with expert pancreatic surgeons-6 males and 4 females. During preoperative counseling, all surgeons attempt to motivate patients by emphasizing hope, optimism, and the fact that surgery offers the only opportunity for cure. All surgeons discuss the possibility of recurrence as well as postoperative complications; however, a majority perceived that patients do not fully appreciate the likelihood of recurrence or postoperative complications. All surgeons acknowledged the importance of end-of-life conversations when death is imminent. Seventy percent of surgeons had mixed opinions regarding benefits of preoperative Advanced Care Planning in the preoperative setting, while 20% felt it was definitely beneficial, particularly that delivery of care aligned with patient goals. All surgeons emphasized that Advanced Care Planning should be led by a physician who both knows the patient well and understands the nuances of pancreatic ductal adenocarcinoma management. Most common barriers to in-depth Advanced Care Planning discussion reported by surgeons include taking away hope, lack of time, and concern for sending "mixed messages." CONCLUSION: We identified that surgeons experience a fundamental tension between promoting realistic long-term goals and expectations versus focusing on hope and enabling an overly optimistic perception of prognosis.


Subject(s)
Advance Care Planning/organization & administration , Carcinoma, Pancreatic Ductal/surgery , Neoplasm Recurrence, Local/epidemiology , Pancreatectomy/adverse effects , Pancreatic Neoplasms/surgery , Postoperative Complications/epidemiology , Carcinoma, Pancreatic Ductal/mortality , Carcinoma, Pancreatic Ductal/psychology , Counseling/organization & administration , Female , Grounded Theory , Hope , Humans , Male , Neoplasm Recurrence, Local/etiology , Neoplasm Recurrence, Local/psychology , Pancreatectomy/psychology , Pancreatic Neoplasms/mortality , Pancreatic Neoplasms/psychology , Physician-Patient Relations , Postoperative Complications/etiology , Postoperative Complications/prevention & control , Postoperative Complications/psychology , Prognosis , Qualitative Research , Surgeons/psychology , Time Factors
12.
BMJ Open ; 11(12): e050016, 2021 12 16.
Article in English | MEDLINE | ID: mdl-34916310

ABSTRACT

OBJECTIVES: Ten per cent of patients diagnosed with pancreatic cancer undergo pancreaticoduodenectomy. There is limited previous research focusing on psychological well-being; unmet support needs impact negatively on quality of life. This paper reports the psychological impact of a pancreatic cancer diagnosis and subsequent pancreaticoduodenectomy, exploring how patients' lives alter following surgery and how they seek support. DESIGN: Inductive qualitative study involving in-depth semistructured interviews with 20 participants who had undergone pancreaticoduodenectomy for pancreatic or distal biliary duct cancer. Interviews were audiorecorded, transcribed and anonymised, and thematic analysis used principles of constant comparison. SETTING: Single National Health Service Trust in Northwest England. PARTICIPANTS: Patients were eligible for inclusion if they had had pancreaticoduodenectomy for head of pancreas cancer, periampullary cancer or distal cholangiocarcinoma between 6 months and 6 years previously, and had completed adjuvant chemotherapy. RESULTS: Analysis identified the following main themes: diagnosis and decision making around surgery; recovery from surgery and chemotherapy; burden of monitoring and ongoing symptoms; adjusting to 'a new normal'; understanding around prognosis; support-seeking. Participants seized the chance to have surgery, often without seeming to absorb the risks or their prognosis. They perceived that they were unable to control their life trajectory and, although they valued close monitoring, experienced anxiety around their appointments. Participants expressed uncertainty about whether they would be able to return to their former activities. There were tensions in their comments about support-seeking, but most felt that emotional support should be offered proactively. CONCLUSIONS: Patients should be made aware of potential psychological sequelae, and that treatment completion may trigger the need for more support. Clinical nurse specialists (CNSs) were identified as key members of the team in proactively offering support; further training for CNSs should be encouraged. Understanding patients' experience of living with cancer and the impact of treatment is crucial in enabling the development of improved support interventions.


Subject(s)
Pancreatic Neoplasms , Pancreaticoduodenectomy , Adaptation, Psychological , Humans , Nurse Clinicians , Pancreatic Neoplasms/psychology , Pancreatic Neoplasms/surgery , Pancreaticoduodenectomy/adverse effects , Pancreaticoduodenectomy/psychology , Patient Care Team , Prognosis , Qualitative Research , Quality of Life/psychology , State Medicine
14.
Cancer Med ; 10(20): 7152-7161, 2021 10.
Article in English | MEDLINE | ID: mdl-34477302

ABSTRACT

BACKGROUND: The Pancreatic Cancer Action Network (PanCAN) Patient Registry is an online, pancreatic cancer-specific, global registry enabling patients to self-report sociodemographics, disease/management characteristics, and patient-reported outcomes (PROs). We sought to describe the creation, user experience, and research potential of the PanCAN Registry. METHODS: We obtained data to describe (1) the creation of the Registry (questionnaire development, marketing efforts, and regulatory considerations); (2) the user experience (user characteristics and interactions with the registry following inception); and (3) the research potential of the registry (comparing PROs and treatment patterns by age [±65 years] and treatment site [community or academic] for users with de novo metastatic disease). RESULTS: The Registry was conceived as part of PanCAN's strategic plan for a personalized therapy initiative. PanCAN staff and disease expert consultants developed questionnaires hosted on an electronic PRO platform. Users had the option to include their data in research efforts, and the Registry platform received institutional review board approval. From 7/2015 to 12/2020, 2187 patients visited the registry and 1697 (77.6%) completed at least one survey (median age = 64 years [range: 24-90], 47.9% women, 88.7% White, 34.0% metastatic disease). Among patients with metastatic disease (N = 567), 46.0% were ≥65 years old and 67.5% received treatment at community sites. Patients ≥65 years reported feeling less hopeful about the treatment plan (12.4% vs. 24.3%, p = 0.003), and patients treated at community sites reported more frequent treatment breaks of >2 weeks (58.2% vs. 28.1%, p < 0.001). CONCLUSIONS: Our findings demonstrate the feasibility, usability, and research potential of an online PRO registry for patients with cancer. This description of the PanCAN Registry should inform future registry-building efforts to facilitate standardized PRO reporting and provide a valuable research database. CLINICAL TRIAL REGISTRATION NUMBER: Not applicable.


Subject(s)
Pancreatic Neoplasms/therapy , Patient Reported Outcome Measures , Registries , Adult , Advertising , Aged , Aged, 80 and over , Cancer Care Facilities , Feasibility Studies , Female , Humans , Male , Middle Aged , Pancreatic Neoplasms/pathology , Pancreatic Neoplasms/psychology , Patient Participation , Precision Medicine , Registries/statistics & numerical data , Research , United States , Young Adult
15.
Anesthesiology ; 135(4): 686-698, 2021 10 01.
Article in English | MEDLINE | ID: mdl-34398950

ABSTRACT

BACKGROUND: Neurolytic splanchnic nerve block is used to manage pancreatic cancer pain. However, its impact on survival and quality of life remains controversial. The authors' primary hypothesis was that pain relief would be better with a nerve block. Secondarily, they hypothesized that analgesic use, survival, and quality of life might be affected. METHODS: This randomized, double-blind, parallel-armed trial was conducted in five Chinese centers. Eligible patients suffering from moderate to severe pain conditions were randomly assigned to receive splanchnic nerve block with either absolute alcohol (neurolysis) or normal saline (control). The primary outcome was pain relief measured on a visual analogue scale. Opioid consumption, survival, quality of life, and adverse effects were also documented. Analgesics were managed using a protocol common to all centers. Patients were followed up for 8 months or until death. RESULTS: Ninety-six patients (48 for each group) were included in the analysis. Pain relief with neurolysis was greater for the first 3 months (largest at the first month; mean difference, 0.7 [95% CI, 0.3 to 1.0]; adjusted P < 0.001) compared with placebo injection. Opioid consumption with neurolysis was lower for the first 5 months (largest at the first month; mean difference, 95.8 [95% CI, 67.4 to 124.1]; adjusted P < 0.001) compared with placebo injection. There was a significant difference in survival (hazard ratio, 1.56 [95% CI, 1.03 to 2.35]; P = 0.036) between groups. A significant reduction in survival in neurolysis was found for stage IV patients (hazard ratio, 1.94 [95% CI, 1.29 to 2.93]; P = 0.001), but not for stage III patients (hazard ratio, 1.08 [95% CI, 0.59 to 1.97]; P = 0.809). No differences in quality of life were observed. CONCLUSIONS: Neurolytic splanchnic nerve block appears to be an effective option for controlling pain and reducing opioid requirements in patients with unresectable pancreatic cancer.


Subject(s)
Cancer Pain/therapy , Nerve Block/methods , Pain Management/methods , Pancreatic Neoplasms/therapy , Quality of Life , Splanchnic Nerves/physiology , Aged , Analgesics, Opioid/administration & dosage , Cancer Pain/mortality , Cancer Pain/psychology , Double-Blind Method , Female , Humans , Male , Middle Aged , Nerve Block/mortality , Pain Measurement/drug effects , Pain Measurement/methods , Pancreatic Neoplasms/mortality , Pancreatic Neoplasms/psychology , Quality of Life/psychology , Splanchnic Nerves/drug effects , Survival Rate/trends
16.
Article in English | MEDLINE | ID: mdl-34250392

ABSTRACT

PURPOSE: National Comprehensive Cancer Network guidelines for germline genetic testing have included pancreatic cancer in the context of additional family cancer history for many years but this was not recommended for patients with pancreatic ductal adenocarcinoma (PDAC) independent of a family history until 2019. This hypothesis-generating study reports the results from multigene panel testing for PDAC patients at an academic medical center. PATIENTS AND METHODS: This prospective longitudinal feasibility study examined responses to genetic counseling and multigene panel testing among PDAC and breast or ovarian cancer (BrOv) patients between October 2016 and November 2017. Pre- and post-test surveys assessed perceptions of genetic risk and testing, recall, comprehension, and emotional reactions to results using open-ended and closed-ended items. RESULTS: Forty-six BrOv and 33 PDAC patients were enrolled, and 44 BrOv and 31 PDAC participants underwent genetic testing. Seven pathogenic variants were identified in six BrOv participants (13.6%), and three pathogenic variants were identified in three PDAC participants (9.7%). The majority of both cohorts expressed similar attitudes about the importance of genetic testing for their personal and family medical management and expressed accurate understanding of implications of their results. Although sample size was small, there were no significant differences between the BrOv and PDAC cohorts for positive or negative emotions. CONCLUSION: This study points to high rates of positive emotions and low rates of negative emotions following genetic test results, suggesting that the emotional reactions to genetic test results are similar for patients with BrOv and PDAC, despite poor prognosis with PDAC diagnoses. Because of the unique needs of the PDAC population following diagnosis, a multidisciplinary approach to germline genetic testing following diagnosis may result in best patient and family member outcomes.


Subject(s)
Breast Neoplasms/diagnosis , Breast Neoplasms/psychology , Carcinoma, Pancreatic Ductal/diagnosis , Carcinoma, Pancreatic Ductal/psychology , Genetic Testing/methods , Ovarian Neoplasms/diagnosis , Ovarian Neoplasms/psychology , Pancreatic Neoplasms/diagnosis , Pancreatic Neoplasms/psychology , Adult , Aged , Aged, 80 and over , Breast Neoplasms/genetics , Carcinoma, Pancreatic Ductal/genetics , Feasibility Studies , Female , Humans , Longitudinal Studies , Male , Middle Aged , Ovarian Neoplasms/genetics , Pancreatic Neoplasms/genetics , Prospective Studies
17.
Eur J Cancer ; 154: 82-91, 2021 09.
Article in English | MEDLINE | ID: mdl-34252759

ABSTRACT

BACKGROUND: Patients with advanced pancreatic cancer (PC) have a high risk of dying in the short or medium-term. This overview aimed to assess the evidence regarding systemic oncological treatments (SOT) versus supportive care for advanced PC. METHODS: We searched for systematic reviews (SRs) in MEDLINE, Embase, The Cochrane Library, Epistemonikos, and PROSPERO. Two authors assessed eligibility independently. Data extraction and methodological quality assessment were conducted by one author and cross-checked by another one. We evaluated the overlap of primary studies, performed a de novo meta-analysis, and assessed the certainty of evidence. Primary outcomes were overall survival (OS), quality of life (QoL), functional status (FS), and toxicity. RESULTS: We identified three SRs that assessed SOT versus supportive care in patients with advanced PC. All SRs had critically low methodological quality. At 12 months, OS improved with chemotherapy, radiotherapy followed by chemotherapy, and immunotherapy, but the certainty of the evidence supporting these findings is very low. The evidence on chemotherapy is very uncertain about its effects on QoL; it suggests a slight increase in toxicity and little to no difference in FS. The evidence on immunotherapy is very uncertain about its effects in toxicity. CONCLUSIONS: The identified evidence is very uncertain about the benefits of oncological treatments on OS and QoL in patients with advanced PC with a high risk of dying in the short or medium-term, so its use should be proposed only to selected patients. Further studies that include a thorough assessment of patient-centred outcomes are needed.


Subject(s)
Pancreatic Neoplasms/therapy , Combined Modality Therapy , Humans , Immunotherapy , Pancreatic Neoplasms/mortality , Pancreatic Neoplasms/psychology , Quality of Life
20.
Pancreas ; 50(3): 280-292, 2021 03 01.
Article in English | MEDLINE | ID: mdl-33835957

ABSTRACT

ABSTRACT: The aim of this study was to examine the health-related effects of exercise in patients with pancreatic cancer (PanCa) through a systematic review of current evidence. Studies were obtained through searching PubMed, Web of Science, PsycINFO, Embase, CINAHL Plus, and Cochrane Library databases with additional hand searches. All intervention-based studies were included if it involved (1) adult patients with PanCa, (2) exercise training, and (3) findings in quality of life, cancer-related fatigue, psychological distress, and physical function. The review protocol was registered in PROSPERO: CRD42020154684. Seven trials described in 9 publications were included consisting of 201 patients with early-stage and advanced PanCa. Participants were required to perform supervised and/or home-based, low- to moderate-intensity resistance and/or aerobic exercise for 12 to 35 weeks or duration of neoadjuvant therapy. There were no exercise-related adverse events with a reported retention rate of 71% to 90% and exercise attendance of 64% to 96%. The programs were consistently associated with improvements in cancer-related fatigue, psychological distress, and physical function, with mixed effects on quality of life. Exercise training seems to be safe and feasible and may have a beneficial effect on various physical and psychological outcomes in patients with PanCa. Further work with rigorous study designs is required to consolidate and advance current findings.


Subject(s)
Exercise Therapy/methods , Exercise/physiology , Fatigue/therapy , Pancreatic Neoplasms/therapy , Psychological Distress , Adult , Fatigue/physiopathology , Female , Humans , Male , Outcome Assessment, Health Care/methods , Pancreatic Neoplasms/physiopathology , Pancreatic Neoplasms/psychology , Quality of Life
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