Perceptions of patient participation in symptom management: A qualitative study with cancer patients, doctors, and nurses

2018 ◽  
Vol 75 (2) ◽  
pp. 412-422 ◽  
Author(s):  
Cen Lin ◽  
Emma Cohen ◽  
Patricia M. Livingston ◽  
Mari Botti
2020 ◽  
Author(s):  
Juqing Zhao ◽  
Pei Chen ◽  
Guangming Wan

BACKGROUND There has been an increase number of eHealth and mHealth interventions aimed to support symptoms among cancer survivors. However, patient engagement has not been guaranteed and standardized in these interventions. OBJECTIVE The objective of this review was to address how patient engagement has been defined and measured in eHealth and mHealth interventions designed to improve symptoms and quality of life for cancer patients. METHODS Searches were performed in MEDLINE, PsychINFO, Web of Science, and Google Scholar to identify eHealth and mHealth interventions designed specifically to improve symptom management for cancer patients. Definition and measurement of engagement and engagement related outcomes of each intervention were synthesized. This integrated review was conducted using Critical Interpretive Synthesis to ensure the quality of data synthesis. RESULTS A total of 792 intervention studies were identified through the searches; 10 research papers met the inclusion criteria. Most of them (6/10) were randomized trial, 2 were one group trail, 1 was qualitative design, and 1 paper used mixed method. Majority of identified papers defined patient engagement as the usage of an eHealth and mHealth intervention by using different variables (e.g., usage time, log in times, participation rate). Engagement has also been described as subjective experience about the interaction with the intervention. The measurement of engagement is in accordance with the definition of engagement and can be categorized as objective and subjective measures. Among identified papers, 5 used system usage data, 2 used self-reported questionnaire, 1 used sensor data and 3 used qualitative method. Almost all studies reported engagement at a moment to moment level, but there is a lack of measurement of engagement for the long term. CONCLUSIONS There have been calls to develop standard definition and measurement of patient engagement in eHealth and mHealth interventions. Besides, it is important to provide cancer patients with more tailored and engaging eHealth and mHealth interventions for long term engagement.


2020 ◽  
Vol 7 (Supplement_1) ◽  
pp. S199-S200
Author(s):  
Olivia Kates ◽  
Elizabeth M Krantz ◽  
Juhye Lee ◽  
John Klaassen ◽  
Jessica Morris ◽  
...  

Abstract Background IDSA/SHEA guidelines recommend that antimicrobial stewardship programs support providers in antibiotic decisions for end of life care. Washington State Physician Orders for Life-Sustaining Treatment (POLST) forms allow patients to indicate antimicrobial use preferences. We sought to characterize antimicrobial use in the last 30 days of life for cancer patients by presence of a POLST and antimicrobial use preferences. Methods We performed a single-center, retrospective cohort study of cancer patient deaths from January 1, 2016 - June 30, 3018. Patient demographics, clinical characteristics, POLST, and antimicrobial use within 30 days before death were extracted from electronic records. To test for an association between POLST completed at least 30 days before death and inpatient antimicrobial days of therapy (DOT) in the 30 days before death, we used negative binomial models adjusted for age, sex, race, and service line (hematologic versus solid malignancy); model estimates are presented as incidence rate ratios (IRR) with 95% confidence intervals (CI) Results Of 1796 patients, 406 (23%) had a POLST. 177/406 (44%) were completed less than 30 days before death, and 58/177 (32.8%) specified limited antibiotic use; 40/177 (23%) did not specify any antimicrobial use preference (Fig 1). Of 1295 patients with at least 1 inpatient day in the 30 days before death, 1070 (83%) received at least 1 inpatient antimicrobial with median DOT of 1077 per 1000 inpatient days (Tab 1). There was no difference in DOT among patients with and without a POLST > /= 30 days before death (IRR 0.92, CI 0.77, 1.10). Patients with a POLST specifying limited antibiotic use had significantly lower inpatient IV antimicrobial DOT compared to those without a POLST (IRR 0.64, CI 0.42–0.97) (Fig 2). Figure 1. Classification of Patients by Presence of POLST, Timing, and Antimicrobial Preference Content of POLST. Numbers shown represent the number of patients (percentage). Full antibiotic use refers to the selection “Use antibiotics for prolongation of life.” Limited antibiotic use refers to the selection “Do not use antibiotics except when needed for symptom management.” Table 1: Antimicrobial use for all patients and by advance directive group Figure 2. Forest plot of model estimates, represented as incidence rate ratios (IRR) with 95% confidence intervals (CI), for associations between POLST antimicrobial specifications completed at least 30 days before death and inpatient antibiotic days of therapy (DOT) in the 30 days before death. Estimates represent comparisons between each POLST category and no POLST completed at least 30 days before death. Dots represent the IRR and brackets extend to the lower and upper limit of the 95% CI. Blue estimates are for the inpatient antibiotic DOT outcome and red estimates are for the inpatient IV antibiotic DOT outcome. Conclusion POLST completion is rare > /= 30 days before death, with few POLSTs specifying antimicrobial use. Compared to those with no POLST in this time frame, patients who indicated that antibiotics should be used only for symptom management received significantly fewer inpatient IV antimicrobials. Early discussion of advance directives including POLST with specification of antimicrobial use preferences may promote more thoughtful use of antimicrobials near the end of life in a compassionate, patient-centered way. Disclosures Steven A. Pergam, MD, MPH, Chimerix, Inc (Scientific Research Study Investigator)Global Life Technologies, Inc. (Research Grant or Support)Merck & Co. (Scientific Research Study Investigator)Sanofi-Aventis (Other Financial or Material Support, Participate in clinical trial sponsored by NIAID (U01-AI132004); vaccines for this trial are provided by Sanofi-Aventis)


2021 ◽  
Vol 36 ◽  
pp. 100731
Author(s):  
Clarissa Polen-De ◽  
Carrie Langstraat ◽  
Gladys B. Asiedu ◽  
Aminah Jatoi ◽  
Amanika Kumar

2020 ◽  
pp. 1-24
Author(s):  
Nida Gizem Yılmaz ◽  
Hande Sungur ◽  
Julia C.M. van Weert ◽  
Maria E.T.C. van den Muijsenbergh ◽  
Barbara C. Schouten

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Nakimuli Esther ◽  
Ssentongo Julius ◽  
Mwaka Amos Deogratius

Abstract Background In the low- and middle-income countries, most patients with esophageal cancer present with advanced stage disease and experience poor survival. There is inadequate understanding of the factors that influence decisions to and actual health-seeking, and adherence to treatment regimens among esophageal cancer patients in Uganda, yet this knowledge is critical in informing interventions to promote prompt health-seeking, diagnosis at early stage and access to appropriate cancer therapy to improve survival. We explored health-seeking experiences and adherence to treatment among esophageal cancer patients attending the Uganda Cancer Institute. Methods We conducted an interview based qualitative study at the Uganda Cancer Institute (UCI). Participants included patients with established histology diagnosis of esophageal cancer and healthcare professionals involved in the care of these patients. We used purposive sampling approach to select study participants. In-depth and key informant interviews were used in data collection. Data collection was conducted till point of data saturation was reached. Thematic content analysis approach was used in data analyses and interpretations. Themes and subthemes were identified deductively. Results Sixteen patients and 17 healthcare professionals were included in the study. Delayed health-seeking and poor adherence to treatment were related to (i) emotional and psychosocial factors including stress of cancer diagnosis, stigma related to esophageal cancer symptoms, and fear of loss of jobs and livelihood, (ii) limited knowledge and recognition of esophageal cancer symptoms by both patients and primary healthcare professionals, and (iii) limited access to specialized cancer care, mainly because of long distance to the facility and associated high transport cost. Patients were generally enthused with patient – provider relationships at the UCI. While inadequate communication and some degree of incivility were reported, majority of patients thought the healthcare professionals were empathetic and supportive. Conclusion Health system and individual patient factors influence health-seeking for symptoms of esophageal cancer and adherence to treatment schedule for the disease. Interventions to improve access to and acceptability of esophageal cancer services, as well as increase public awareness of esophageal cancer risk factors and symptoms could lead to earlier diagnosis and potentially better survival from the disease in Uganda.


2012 ◽  
Vol 43 (2) ◽  
pp. 377-378
Author(s):  
Anne Walling ◽  
Jane Weeks ◽  
Katherine Kahn ◽  
Diana Tisnado ◽  
Nancy Keating ◽  
...  

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