scholarly journals Physical Activity as a Nonpharmacological Symptom Management Approach in Myeloproliferative Neoplasms: Recommendations for Future Research

2016 ◽  
Vol 16 (4) ◽  
pp. 439-450 ◽  
Author(s):  
Ryan Eckert ◽  
Jennifer Huberty ◽  
Krisstina Gowin ◽  
Ruben Mesa ◽  
Lisa Marks
Keyword(s):  
Physical Activity ◽  
Symptom Management ◽  
Myeloproliferative Neoplasms ◽  
Symptom Burden ◽  
Preliminary Evidence ◽  
Cardiovascular Fitness ◽  
Future Research ◽  
Cell Transplant ◽  
Patient Reported ◽  
Hematological Cancers

Purpose: Essential thrombocythemia, polycythemia vera, and myelofibrosis are rare chronic hematological malignancies known as myeloproliferative neoplasms (MPNs) and are characterized by deregulated myeloid lineage cell production, splenomegaly, and heterogeneous symptom profiles. MPN patients suffer from a significant symptom burden (eg, fatigue, depressive symptoms, early satiety) and an impaired overall quality of life (QoL). Current treatments typically include pharmacological approaches, which may come with additional side effects and may be limited by treatment-associated toxicities (ie, cytopenias). Nonpharmacological approaches such as physical activity may be beneficial for reducing symptom burden and improving QoL. To date, no studies have examined physical activity as a nonpharmacological approach in MPN patients despite preliminary evidence supporting its benefit in other hematological cancers. The purpose of this article is to (1) review the literature related to physical activity and specific hematological cancer subtypes and to (2) make suggestions for future research involving physical activity in MPN patients as a symptom management strategy. Methods: A brief review of studies examining physical activity in leukemias, lymphomas, and myelomas (excluding stem-cell transplant patients) was conducted. Results: There is preliminary evidence to suggest that physical activity may be an effective approach to improve patient-reported outcomes (fatigue, depression, anxiety, sleep), physical fitness (cardiovascular fitness, balance, body composition), and overall QoL in other hematological cancers. Conclusions: Based on encouraging findings in other hematological cancers, future research should examine the feasibility and effectiveness of physical activity in MPN patients.

scholarly journals Longitudinal study of symptom burden in outpatients with advanced cancers based on electronic Patient-Reported Outcome (ePRO) platform: a single institution, prospective study protocol

BMJ Open ◽  
2020 ◽  
Vol 10 (11) ◽  
pp. e038223
Author(s):  
Lili Tang ◽  
Ying Pang ◽  
Yi He ◽  
Qiuling Shi ◽  
Xinkun Han ◽  
...  
Keyword(s):  
Study Protocol ◽  
Symptom Management ◽  
Depression Scale ◽  
Symptom Burden ◽  
Patient Reported Outcome ◽  
Critical Parameters ◽  
Advanced Lung Cancer ◽  
Optimal Time ◽  
Patient Reported

IntroductionAn electronic Patient-Reported Outcome (ePRO) platform is needed for implementing evidence-based symptom management in outpatients with advanced cancer. We describe the overall protocol and the methodology for measuring symptom burden, to provide critical parameters needed to implement symptom management on the ePRO platform.Methods and analysisThe study focusses on patients with advanced lung cancer, stomach cancer, oesophagus cancer, liver cancer, colorectal cancer or breast cancer. The primary outcome is the change of symptom burden. MD Anderson Symptom Inventory, and other PRO instruments (Insomnia Severity Index, Hospital Anxiety and Depression Scale, 9-item Patient Health Questionnaire and EuroQol-5 dimensions-5 levels version) were used. The secondary outcomes include feasibility of using ePRO, symptom-related quality of life, reasons for no improvement of symptoms, defining frequency of PRO assessments and cut-points, items for screening and management of comorbidity and satisfaction with ePRO platform in patients and health providers. After initial outpatient visit for baseline assessment, ePRO system will automatically send follow-up notification seven times over 4 weeks to patients. The characteristics and changing trajectory of symptoms of patients will be described. Parameters for using PROs, such as optimal time points for follow-up and cut-off point for alert will be determined. The feasibility of ePRO platform to track the changes of target symptoms in outpatients will be evaluated.Ethics and disseminationThe study protocol and related documents were approved by the Institutional Research Board (IRB) of Peking University Cancer Hospital on 13 February 2019 (2019YJZ07). The results of this study will be disseminated through academic workshops, peer-reviewed publications and conferences.Trial registration numberChiCTR1900023560.

scholarly journals The HOPE Pilot Study: Harnessing Patient-Reported Outcomes and Biometric Data to Enhance Cancer Care

2018 ◽  
pp. 1-12 ◽  
Author(s):  
Alexi A. Wright ◽  
Nikita Raman ◽  
Patrick Staples ◽  
Stephanie Schonholz ◽  
Angel Cronin ◽  
...  
Keyword(s):  
Physical Activity ◽  
Health Status ◽  
Clinical Outcomes ◽  
Mobile Health ◽  
Symptom Management ◽  
Patient Reported Outcomes ◽  
Perceived Effectiveness ◽  
Activity Data ◽  
Patient Reported ◽  
Wearable Accelerometers

Purpose Integrating patient-reported outcomes (PROs) into clinical practice is an increasingly promising strategy for improving patients’ symptoms, communication, and clinical outcomes. The objective of the current study was to assess the feasibility, acceptability, and perceived effectiveness of a mobile health intervention that was designed to collect PROs and activity data as a measure of health status. Patients and Methods This work was a pilot intervention with 10 patients with gynecologic cancers who received palliative chemotherapy. The HOPE (Helping Our Patients Excel) study used wearable accelerometers to assess physical activity and the Beiwe research platform to collect PROs, stratify patient responses by risk, provide tailored symptom management, and notify patients and clinicians of high-risk symptoms. Feasibility and acceptability were assessed through enrollment and adherence rates, and perceived effectiveness was evaluated by patients and oncologists at study completion. Results The approach-to-consent rate was 100%, and participants were 90% and 70% adherent to the wearable accelerometers and smartphone surveys, respectively. Participants’ mean daily step count was 3,973 (standard deviation [SD], 2,305 steps) and increased from week 1 (mean, 3,520 steps; SD, 1,937 steps) to week 3 (mean, 4,136 steps; SD, 1,578 steps). Active monitoring of participants’ heart rates, daily steps, and PROs throughout the study identified anomalies in participants’ behavior patterns that suggested poor health for two patients (20%). Patients and clinicians indicated that the intervention improved physical activity, communication, and symptom management. Conclusion A mobile health intervention that collects PROs and activity data as a measure of health status is feasible, acceptable, and was perceived to be effective in improving symptom management in patients with advanced gynecologic cancers. A larger, multisite, randomized clinical trial to assess the efficacy of the HOPE intervention on patients’ symptoms, health-related quality of life, clinical outcomes, and health care use is warranted.

The association between physical functioning, symptom burden, and coping strategies with quality of life (QOL) in patients with chronic graft-versus-host disease (cGVHD).

2018 ◽  
Vol 36 (34_suppl) ◽  
pp. 178-178
Author(s):  
Robert Sommer ◽  
Jamie M. Jacobs ◽  
Lauren Waldman ◽  
Lara Traeger ◽  
Joseph Greer ◽  
...  
Keyword(s):  
Psychological Distress ◽  
Coping Strategies ◽  
Physical Functioning ◽  
Depression Scale ◽  
Symptom Burden ◽  
Cell Transplant ◽  
Symptom Scale ◽  
Patient Reported ◽  
And Coping ◽  
Over Time

178 Background: Allogeneic stem cell transplant survivors with cGVHD experience substantial psychological distress and impairments in QOL. However, the relationship between patients’ physical functioning, symptom burden, coping strategies, and QOL over time is unknown. Methods: We conducted a longitudinal study of patients with moderate-severe cGVHD. We assessed patient-reported psychological distress (Hospital Anxiety and Depression Scale), QOL (Functional Assessment of Cancer Therapy-General), physical functioning (Human Activity Profile), cGVHD symptom burden (Lee Symptom Scale), and coping (Coping Inventory for Stressful Situations) at baseline, 3 months, and 6 months. Using mixed linear effects models, we examined the longitudinal relationship between QOL and physical functioning, cGVHD symptoms, and coping strategies. Results: We enrolled 53 patients with moderate (71.7%, 38/53) or severe (28.3%, 15/53) cGVHD. The rate of clinically significant depression and anxiety symptoms at baseline was 32.1% (17/53) and 30.2% (16/33), respectively, and did not change over time. Patients reported low QOL at baseline [M = 70.33, SD = 18.96], which did not change significantly over time [β = -0.66, SE = 1.11, P = 0.550]. Over time, higher physical functioning was associated with better QOL [β = 0.17, SE = 0.05, P = 0.001], while greater symptom burden was associated with worse QOL [β = -0.38, SE = 0.06, P < 0.001]. While the use of emotion-oriented coping was associated with lower QOL over time [β = -0.70, SE = 0.14, P < 0.001], the use of avoidance-oriented coping was associated with higher QOL over time [β = 0.38, SE = 0.10, P < 0.001]. Task-oriented coping was not associated with psychological distress or QOL. Conclusions: Patients with moderate-severe cGVHD report substantial psychological distress and persistently impaired QOL over time. Higher physical function and lower symptom burden are associated with improved QOL. The use of certain coping strategies was associated with changes in QOL. These data underscore the need for supportive care interventions to promote effective coping and enhance physical functioning in patients with cGVHD.

scholarly journals QOLP-28. THE USE OF VIRTUAL REALITY FOR SYMPTOM MANAGEMENT: APPLICATION IN NEURO-ONCOLOGY

2019 ◽  
Vol 21 (Supplement_6) ◽  
pp. vi203-vi204
Author(s):  
Nicole Leggiero ◽  
Terri Armstrong ◽  
Elizabeth Vera ◽  
Mark Gilbert ◽  
Amanda King
Keyword(s):  
Virtual Reality ◽  
Symptom Management ◽  
Strong Support ◽  
Symptom Burden ◽  
High Grade Glioma ◽  
Tumor Patients ◽  
Cns Tumor ◽  
Pain Anxiety ◽  
Common Diagnosis ◽  
Patient Reported

Abstract Patients with primary central nervous system (CNS) tumors are highly symptomatic due to the functional sequelae of their disease and an unfavorable prognosis. Virtual reality (VR) immersive technology has demonstrated benefit in improving patients’ symptom burden, such as distress, pain, anxiety, and fatigue. However, this has not been explored in a CNS tumor population. This project explored the potential use of VR for symptom management in CNS tumor patients. A descriptive analysis of MDASI-BT/MDASI-SP/PROMIS-Anxiety patient-reported outcomes (PROs) for 535 CNS tumor patients was performed to identify the common moderate-severe (> 4 on a 0–10 scale) symptoms. Additionally, a systematic review of literature was performed addressing the question “For adult patients with solid tumors, what effect does VR have on their self-reported symptoms, such as distress, anxiety and pain?” The systematic literature review resulted in 17 studies using VR in other solid tumor populations, which demonstrated improvement in pain, anxiety, and distress. However, study designs often lacked rigor and none incorporated any biomarkers to correlate with PROs. CNS tumor symptom review of our patient cohort revealed that the majority of the patients were Caucasian (83%) males (58%) with a median age of 50 years (range, 18–83). At the time of diagnosis, 35% had a gross total resection. Glioblastoma was the most common diagnosis (32%) and 50% had a high-grade glioma. The most prevalent moderate-severe symptoms in this sample was fatigue (34%), with (14%) anxiety, (18%) pain, and (19%) distress. Given the high symptom rate in our patients, the promising but limited data that VR technology could improve distress and other symptoms provides strong support for this intervention in the CNS tumor population. Further research is needed to assess feasibility and efficacy of VR, as well as incorporation of correlative biomarkers, to better determine potential improvement in patient symptom burden.

scholarly journals Optimising symptom management in children with cancer using a novel mobile phone application: protocol for a controlled hybrid effectiveness implementation trial (RESPONSE)

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Natalie Bradford ◽  
Paula Condon ◽  
Erin Pitt ◽  
Zephanie Tyack ◽  
Kimberly Alexander
Keyword(s):  
Symptom Management ◽  
Controlled Trial ◽  
Intervention Group ◽  
Symptom Burden ◽  
Control Group ◽  
Children With Cancer ◽  
Randomised Study ◽  
Response System ◽  
Implementation Outcomes ◽  
Patient Reported

Abstract Background Intense and aggressive treatment regimens for most children’s cancer have achieved vast improvements in survival but are also responsible for both a high number and burden of symptoms. The use of Patient Reported Outcome Measures (PROMs) demonstrates a range of benefits for improved symptom management in adults with cancer. There are, however, multiple barriers to integrating PROMs into routine care in children and adolescents with cancer. This study aims to evaluate: (1) the effectiveness of electronic PROMs to generate stratified alerts, symptom management recommendations and graphical summaries (the RESPONSE system) to improve health outcomes and (2) the implementation of the RESPONSE system by assessing feasibility, acceptability, satisfaction, and sustainability. Methods A pragmatic hybrid II effectiveness-implementation controlled trial, using mixed methods, will be undertaken, advancing both knowledge of the effectiveness of the intervention and implementation factors. One-hundred and sixty children with cancer receiving active treatment will be recruited 1:1 to a non-randomised study involving two groups with an equal number of participants in each group. The intervention group (n = 80) will be prospectively recruited to receive the RESPONSE system intervention over eight weeks, versus the historical matched control group (n = 80) who will complete the ePROMs without access to the RESPONSE system. The primary outcome of the effectiveness trial is change between groups in total symptom burden. Secondary outcomes include child health-related quality-of-life and implementation outcomes. Trial data will be analysed using linear mixed-effects models. Formative implementation evaluation is informed by CFIR and ERIC frameworks and implementation outcomes will be mapped to the RE-AIM framework and include interviews, field notes, as well as administrative data to evaluate feasibility, acceptability, satisfaction and sustainability. Trial registration number ACTRN12621001084875. Retrospectively Registered 16 August 2021.

scholarly journals Pilot Trial of an Acceptance-Based Behavioral Intervention to Promote Physical Activity Among Adolescents

2018 ◽  
Vol 35 (6) ◽  
pp. 449-461 ◽  
Author(s):  
Jocelyn E. Remmert ◽  
Amanda Woodworth ◽  
Larissa Chau ◽  
Leah M. Schumacher ◽  
Meghan L. Butryn ◽  
...  
Keyword(s):  
Physical Activity ◽  
Behavioral Intervention ◽  
Pilot Trial ◽  
Intervention Group ◽  
Preliminary Evidence ◽  
Cardiovascular Fitness ◽  
Preliminary Treatment ◽  
Physiological Outcomes ◽  
Device Use ◽  
Tracking Device

Prior interventions have shown limited efficacy in increasing the number of adolescents engaging in adequate physical activity (PA). Preliminary evidence suggests acceptance-based behavioral treatments (ABTs) may increase PA; however, this approach has not been tested in adolescents. This was a nonrandomized experimental pilot study that examined feasibility, acceptability, and treatment outcomes of a school-based, acceptance-based behavioral intervention for PA. Adolescents ( n = 20) with low activity received a PA tracking device and were allocated to device use only or device use plus 10-weeks of ABT. PA, cardiovascular fitness, and physiological outcomes were measured pre- and postintervention. The intervention was found to be feasible and acceptable. PA, cardiovascular fitness, and physiological outcomes improved over time in the intervention group, but not in the comparison condition. This study demonstrated feasibility, acceptability, and preliminary treatment efficacy based on effect sizes for an acceptance-based behavioral intervention to increase PA in adolescents.

scholarly journals Nature-based supportive care opportunities: a conceptual framework

2018 ◽  
Vol 10 (1) ◽  
pp. 36-44
Author(s):  
Sarah Blaschke ◽  
Clare C O’Callaghan ◽  
Penelope Schofield
Keyword(s):  
Supportive Care ◽  
Conceptual Framework ◽  
Meaning Making ◽  
Preliminary Evidence ◽  
Additional Patient ◽  
Future Research ◽  
Positive Health ◽  
Theoretical Concepts ◽  
Patient Reported ◽  
Cancer Experience

ObjectiveGiven preliminary evidence for positive health outcomes related to contact with nature for cancer populations, research is warranted to ascertain possible strategies for incorporating nature-based care opportunities into oncology contexts as additional strategies for addressing multidimensional aspects of cancer patients’ health and recovery needs. The objective of this study was to consolidate existing research related to nature-based supportive care opportunities and generate a conceptual framework for discerning relevant applications in the supportive care setting.MethodsDrawing on research investigating nature-based engagement in oncology contexts, a two-step analytic process was used to construct a conceptual framework for guiding nature-based supportive care design and future research. Concept analysis methodology generated new representations of understanding by extracting and synthesising salient concepts. Newly formulated concepts were transposed to findings from related research about patient-reported and healthcare expert-developed recommendations for nature-based supportive care in oncology.ResultsFive theoretical concepts (themes) were formulated describing patients’ reasons for engaging with nature and the underlying needs these interactions address. These included: connecting with what is genuinely valued, distancing from the cancer experience, meaning-making and reframing the cancer experience, finding comfort and safety, and vital nurturance. Eight shared patient and expert recommendations were compiled, which address the identified needs through nature-based initiatives. Eleven additional patient-reported recommendations attend to beneficial and adverse experiential qualities of patients’ nature-based engagement and complete the framework.ConclusionsThe framework outlines salient findings about helpful nature-based supportive care opportunities for ready access by healthcare practitioners, designers, researchers and patients themselves.

Patient and physician preferences for NIH PROMIS patient-reported outcome (PRO) domains in pancreatic ductal adenocarcinoma (PDA).

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. e15721-e15721
Author(s):  
Michelle Guan ◽  
Gillian Gresham ◽  
Arvind Manohar Shinde ◽  
Veronica Placencio-Hickok ◽  
Jun Gong ◽  
...  
Keyword(s):  
Symptom Management ◽  
Symptom Burden ◽  
Patient Reported Outcome ◽  
Health Priorities ◽  
Ductal Adenocarcinoma ◽  
Pain Anxiety ◽  
Resection Status ◽  
Patient Reported ◽  
Health Domains ◽  
Patient Values

e15721 Background: PDA is associated with high symptom burden. However, treatment and palliation decisions currently weigh on physician interpretation of clinical parameters and may not consider patient values and preferences. The NIH PROMIS tool was created to capture various health domains through PROs. The objective of this study was to identify the most important PROMIS domains to PDA pts and physician providers. Methods: Using the 31 domains in NIH’s PROMIS, we conducted online surveys with PDA pts and PDA physicians from 17 academic centers. These domains are categorized into mental, physical, and social health. Values for the PRO domains were quantified using Maximum Differences Scaling (Sawtooth Software). Results: A total of 116 PDA pts (55% males, 45% females; median age: 68 years, range 42-95) and 33 physicians (78% males, 22% females; median years of experience: 15) completed the surveys. The top five domains identified by pts and providers are listed in the table. Physical functioning (PF), ability to perform activities of daily living (ADLs) and symptom management were among the top domains for both pts and physicians regardless of age, gender, resection status, or years of physician experience. However, social domains such as ability to do things for yourself, family, and friends, and interactions with family/friends were ranked significantly higher by pts versus pain, anxiety, and depression by physicians (p < 0.01). Conclusions: Our findings suggest PDA pts value PF and engaging in work and social activities while physicians focus more on pain, depression, and symptom management. PROs need to become more important endpoints in clinical trials to better inform treatment decisions and develop therapies that address the health priorities of pts. [Table: see text]

scholarly journals QOLP-20. IMPACT OF GLIOBLASTOMA ON PATIENT-REPORTED SYMPTOM BURDEN AND PHYSICAL ACTIVITY ASSESSED BY CONVENTIONAL INSTRUMENTS AND A NOVEL DEVICE–BASED TECHNOLOGY

2019 ◽  
Vol 21 (Supplement_6) ◽  
pp. vi201-vi202
Author(s):  
Terri Armstrong ◽  
Vinay Puduvalli ◽  
Tobias Walbert ◽  
Katherine Peters ◽  
Ashlee Loughan ◽  
...  
Keyword(s):  
Physical Activity ◽  
Physical Function ◽  
Stable Disease ◽  
Symptom Severity ◽  
Recurrent Disease ◽  
Symptom Burden ◽  
Motor Dysfunction ◽  
Newly Diagnosed ◽  
Patient Reported ◽  
Group 1

Abstract Glioblastoma (GBM) is a rapidly progressing disease associated with significant deterioration in quality of life. This study evaluated clinical patient-reported outcomes (PROs) and the physical activity of patients with GBM. Adults with GBM (n=180) were stratified across 4 groups representing specific stages in the disease course: Group 1=newly diagnosed; 2=postradiation; 3=stable disease; 4=recurrence. Self-reported physical function (EORTC-QLQC30), motor dysfunction (BN20), symptom burden and interference (MDASI-BT), and objective physical activity level (via Fitbit®) were compared across groups by ANOVA. Associations between outcomes were assessed with a Pearson correlation (r) test. Patients were highly symptomatic, with overall mean (MDASI-BT) symptom severity (1.7–2.4; P=0.23) and interference (2.3–3.2; P=0.68) scores similar across groups. Patients with recurrent disease experienced the numerically greatest symptom severity and interference. Self-reported activity-related interference scores (2.7–3.6, P=0.48) were highest in patients with newly diagnosed or recurrent disease. Motor dysfunction (BN20) mean scores were highest in postradiation (22) and recurrent (22) disease groups (P=0.95). Mean physical function (EORTC-QLQC30) scores were worse in patients with recurrent disease (67) than in those with stable disease (79; P=0.38). Newly diagnosed patients and those with stable disease were the most active (≈4000 and ≈4500 mean steps/day, respectively), whereas those with recurrent disease were least active (≈2300 mean steps/day; P=0.032). Greater physical activity (via Fitbit®) correlated with better self-reported physical function (EORTC-QLQC30) for all groups (Group 1, r=0.0292; Group 2, r=0.0211; Group 3, r=0.0008; Group 4, r=0.0002). Greater motor dysfunction was correlated with lower physical activity in patients with stable (r=0.0003) and recurrent (r=0.0441) disease. Patients in this study were highly symptomatic throughout the disease stages with disease recurrence associated with worse motor and physical function. Future studies exploring these findings in a longitudinal cohort are needed to assess this relationship.

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