The Physical Health of Patients With Advanced Pancreatic Cancer and the Psychological Health of Their Family Caregivers When Newly Enrolled in Hospice

Sherman, Deborah Witt; McMillan, Susan C.

doi:10.1097/njh.0000000000000154

Cited by 11 publications

(25 citation statements)

References 41 publications

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“…However, pancreatic cancer is particularly aggressive and fatal, and as such, understanding the constellation and severity of symptoms of this specific group of patients is beneficial. Although studies describing symptoms in APC using PROs are limited, the existing data are consistent with what is seen in our population, with the presence of moderate-to-severe symptoms at the time of diagnosis [28,29], while receiving treatment [6], and at the time of hospice enrolment [30].…”

Section: Discussionsupporting

confidence: 85%

“…Comparatively, in metastatic lung, colorectal, prostate, and breast cancers, 42.3%, 26.7%, 24.5%, and 22.6%, of patients respectively reported moderate-tosevere physical symptoms, while 33.4%, 24,3%, 19.5% and 26.1% respectively reported moderate-to-severe psychological symptoms [25]. Similar to what has been reported in other cancer populations [6,24,26,[28][29][30]33,34], fatigue/tiredness was a major symptom in our cohort. Other common moderate-to-severe symptoms in our population included anxiety, shortness of breath, and nausea.…”

Section: Discussionsupporting

confidence: 76%

“…The lack of moderate-to-severe pain in our study may reflect the unique nature of our cohort, which was patients with APC who were functionally well enough to receive palliative intent modern CT. However, even in a group of patients with APC requiring hospice care [30], 28% of patients did not report pain. Others have hypothesized that tumor location and proximity to the celiac plexus may be responsible for differing reports of pain [29].…”

Section: Discussionmentioning

confidence: 80%

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Symptom Burden of Patients with Advanced Pancreas Cancer (APC): A Provincial Cancer Institute Observational Study

et al. 2021

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Patients with advanced pancreatic cancer (APC) experience many disease-related symptoms. ESAS-r measures the severity of 9 symptom domains and has been validated for use in the ambulatory oncology setting. We aimed to describe symptom burden at baseline for patients with APC treated with modern chemotherapy (CT), and to determine whether symptom burden at baseline is prognostic. Patients diagnosed with APC between 2012–2016, treated with ≥1 cycle of CT, who completed ≥1 ESAS-r were identified. Descriptive statistics were used to report symptom burden and common moderate-to-severe symptoms. A joint model was used to describe the trajectory of ESAS-r during follow-up while controlling for death. Multivariable Cox regression was used to identify independent predictors of death. Of 123 patients identified, the median age was 65 and 61% had metastatic disease. The median baseline ESAS-r total symptom distress score (TSDS) was 24. A total of 86% of patients had at least one symptom score of ≥4 at baseline, with the most common being: fatigue, nausea, anxiety, and shortness of breath. Median overall survival was 10.2 months. Baseline TSDS was not predictive for worse survival in the era of modern CT. Patients with APC have a high burden of cancer-associated symptoms and a high prevalence of moderate-to-severe symptoms. Early intervention has the potential to improve quality of life in this group of patients and should be investigated.

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Section: Discussionsupporting

confidence: 85%

Section: Discussionsupporting

confidence: 76%

Section: Discussionmentioning

confidence: 80%

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Symptom Burden of Patients with Advanced Pancreas Cancer (APC): A Provincial Cancer Institute Observational Study

et al. 2021

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“…2 Because of the often asymptomatic nature of PDAC during early stages, 80% to 90% of patients with PDAC have unresectable tumors at presentation, with therapeutic options that are noncurative and often accompanied by serious toxicities and symptoms. 3,4 The high disease burden of PDAC notably affects the health-related quality of life (HRQoL) of patients, making it essential for patient preferences and goals to be adequately considered when treatment decisions are made. 5 Historically, priorities in oncology emphasized clinical outcomes and the evaluation of tumor response based on physician interpretation of parameters such as laboratory values, tumor markers, and imaging.…”

Section: Introductionmentioning

confidence: 99%

Priority Rankings of Patient-Reported Outcomes for Pancreatic Ductal Adenocarcinoma: A Comparison of Patient and Physician Perspectives

Guan

Gresham

Shinde

et al. 2020

Journal of the National Comprehensive Cancer Network

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Background: Pancreatic ductal adenocarcinoma (PDAC) is associated with high symptom burden. However, treatment decisions currently depend heavily on physician interpretation of clinical parameters and may not consider patients’ health preferences. The NIH Patient-Reported Outcomes Measurement Information System (PROMIS) initiative standardized a set of patient-reported outcomes for use in chronic diseases. This study identifies preference rankings among patients with PDAC and physicians for PROMIS domains and compares the priorities of patients and their providers. Methods: We condensed the 96 NIH PROMIS adult domains into 31 domains and created a Maximum Difference Scaling questionnaire. Domain preference scores were generated from the responses of patients with PDAC and physicians, which were compared using Maximum Difference Scaling software across demographic and clinical variables. Results: Participants included 135 patients with PDAC (53% male; median age, 68 years) and 54 physicians (76% male; median years of experience, 10). Patients selected physical functioning (PF) as their top priority, whereas physicians identified pain as most important. PF, ability to perform activities of daily living, and symptom management were within the top 5 domains for both patients and physicians, and varied only slightly across age, sex, and ethnicity. However, several domains were ranked significantly higher by patients than by physicians, including but not limited to PF; ability to do things for yourself, family, and friends; ability to interact with others to obtain help; and sleep quality. Physicians ranked pain, anxiety, and depression higher than patients did. Conclusions: Our findings suggest that patients with PDAC value PF and engaging in daily and social activities the most, whereas physicians prioritize symptoms such as pain. Patient-reported outcomes need to become more integrated into PDAC care and research to better identify unmet patient needs, inform treatment decisions, and develop therapies that address outcomes valued by patients.

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“…5 Identifying pain within this population is important because hospice patients and their caregivers may experience heightened distress if pain symptoms are not reduced to a tolerable level. 6,7 Medicare conditions of participation require hospice providers to complete a comprehensive psychosocial assessment for newly enrolled patients including content about the patient and family adjustment to illness. Findings from this assessment are used to inform the plan of care and guide clinical interventions for the patient.…”

Section: Introductionmentioning

confidence: 99%

The Assessment of Pain and Barriers to Pain Management: A Content Analysis From a National Sample of Hospice Psychosocial Assessments Completed by Social Workers

Ware

Cagle

2020

Am J Hosp Palliat Care

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Pain is a multidimensional symptom frequently experienced by hospice patients that is physical, psychological, social, emotional, and spiritual. Medicare regulations require hospices to complete a psychosocial assessment with content such as patient/family adjustment to illness. Furthermore, pain barriers such as concerns about addiction, and fatalism are recognized impediments to high quality pain management. National data concerning whether hospice social workers are paying attention to issues related to patient pain is minimal. Addressing this gap, we randomly sampled 248 hospices nationally and requested a blank copy of their social work psychosocial assessment and reviewed its pain-related content. A total of 105 hospices (response rate 42.3%) provided an assessment for review. Descriptive statistics summarize agency characteristics and whether pain assessment content and pain barrier content were present. Analyses examined whether pain assessment content was included based on agency characteristics. Of the 105 participating agencies, most were non-profit (60%) and located in the South (30.5%). Less than half (47.6%) of the agencies included pain assessment content in their assessment. No associations were observed between having pain assessment content and agency characteristics. None of the assessments included content about 3 barriers to pain management: tolerance, overdose, stigma, and fatalism. Few agencies included other barriers to pain management: addiction (1%), burden (1%), non-adherence (3.8%) and stoicism (18.1%). Agencies which had pain assessment content mostly included other dimensions of pain: psychological (80%), emotional (74%), and social (78%). Hospice social workers can do more to assess and address pain concerns—especially psychological, social, and emotional dimensions.

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The Physical Health of Patients With Advanced Pancreatic Cancer and the Psychological Health of Their Family Caregivers When Newly Enrolled in Hospice

Cited by 11 publications

References 41 publications

Symptom Burden of Patients with Advanced Pancreas Cancer (APC): A Provincial Cancer Institute Observational Study

Symptom Burden of Patients with Advanced Pancreas Cancer (APC): A Provincial Cancer Institute Observational Study

Priority Rankings of Patient-Reported Outcomes for Pancreatic Ductal Adenocarcinoma: A Comparison of Patient and Physician Perspectives

The Assessment of Pain and Barriers to Pain Management: A Content Analysis From a National Sample of Hospice Psychosocial Assessments Completed by Social Workers

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