scholarly journals The Utility of Multi-dimensional Symptom Assessment Scales for Children Treated in a Tertiary Paediatric Oncology Unit: a Prospective Survey-based Study

Author(s):  
Naomi T Katz ◽  
Bronwyn H Sacks ◽  
Sidharth Vemuri ◽  
Molly Williams ◽  
Kanika Bhatia ◽  
...  

Abstract Background: Children undergoing cancer-directed treatment experience distressing symptoms. Multi-dimensional patient-reported symptom assessment scales have been validated in children with cancer, but are not routinely used in clinical practice.Aim: To describe the symptom prevalence and burden for children receiving treatment in a paediatric oncology unit, as described by both children where possible, and their parents.Methods: Prospective survey-based study during which the Memorial Symptom Assessment Scale was administered to children and parents. Participants were offered the opportunity to complete the survey on multiple occasions. Demographic and clinical data were obtained from electronic medical records. Institutional ethics approval was granted (HREC37022A).Results: Forty-one children were recruited, aged 8 months to 18 years and 54% were female. In total, 54 parent surveys and 29 child surveys were completed. The vast majority of surveys (81%) were completed in the inpatient setting, and more than half within 10 days of chemotherapy. Haematological malignancies predominated. There was a median of 4.8 months between diagnosis and recruitment. Eleven children died after the study closed; no patients died during the study period. Children aged 10 – 18 reported an average of 15 symptoms. Symptom prevalence did not always correlate with distress.Conclusions: Exploration of the impact of a symptom, and not just its presence, is vital for patient-centred care and can be achieved using multi-dimensional symptom scales. Both the child and caregiver’s voices should be obtained where possible. Further studies are needed to explore how these scales can be used to identify distress and guide supportive care delivery.

2021 ◽  
Vol 5 (2) ◽  
pp. 14-24
Author(s):  
Remziye Semerci ◽  
Melahat Akgunmela Kostak ◽  
Tuba Eren ◽  
Filiz Savran ◽  
Gulcan Avci

Abstract Clinical specialists have suggested that adolescents with cancer experience multiple problems including physical, psychological, and emotional symptoms. This study aimed to identify symptoms and symptoms clusters among adolescent inpatients and outpatients receiving cancer treatment. The study’s sample consisted of 26 adolescents who were selected with the purposeful sampling method in a paediatric oncology unit in Edirne, Turkey. Data were collected using the Memorial Symptom Assessment Scale (MSAS). From the results of the research, in terms of symptoms, outpatients reported a greater lack of concentration than inpatients did. Inpatients reported more hair loss and weight loss symptoms than outpatients. Adolescent inpatients and outpatients experienced the most symptoms during the treatment. Inpatient adolescents experienced more acute treatment-related symptoms than did outpatients. The study recommends regular monitoring and screening for nurses to identify symptom and symptom clusters. Keywords: Adolescent; nursing; symptom cluster; symptom assessment; cancer;  


2019 ◽  
Vol 10 (04) ◽  
pp. 580-596 ◽  
Author(s):  
Raniah N. Aldekhyyel ◽  
Caitlin J. Bakker ◽  
Michael B. Pitt ◽  
Genevieve B. Melton

Background While some published literature exists on the use of interactive patient care systems, the effectiveness of these systems on the management of pain is unclear. To fill this gap in knowledge, we aimed to understand the impact and outcomes of pain management patient interactive systems in an inpatient setting. Methods A systematic literature review was conducted across seven databases, and results were independently screened by two researchers. To extract relevant data, critical appraisal forms were developed and each paper was examined by two experts. Information included patient interactive system category, patient population and number of participants/samples, experiment type, and specific outcome measures. Results Out of 58 full-text articles assessed for eligibility, 18 were eligible and included in the final qualitative synthesis. Overall, there were two main types of pain management interactive systems within the inpatient setting (standalone systems and integrated platform systems). While systems were diverse especially for integrated platforms, most reported systems were entertainment distraction systems. Reports examined a variety of outcome measures, including changes in patient-reported pain levels, patient engagement, user satisfaction, changes in clinical workflow, and changes in documentation. In the 13 systems measuring pain scores, 12 demonstrated a positive impact on pain level scores. Conclusion Pain management systems appear to be effective in lowering patient level scores, but research comparing the effectiveness and efficacy of one type of interactive system versus another in the management of pain is needed. While not conclusive, pain management systems integrated with other technology platforms show potentially promising effects with improving patient communication, education, and self-reporting.


2015 ◽  
Vol 33 (29_suppl) ◽  
pp. 69-69
Author(s):  
Brenda O'Connor ◽  
Kirby Jeter ◽  
Siobhan Blackwell ◽  
Lucy Burke ◽  
Emma Victoria Conway ◽  
...  

69 Background: Systematic assessment in cancer is conducted by a variety of instruments. Such assessment is important as comprehensive instruments detect more symptoms than casual clinical evaluation. In choosing assessment scales for polysymptomatic cancer patients one must consider the burden of assessment to ensure satisfactory completion rates. This study investigated patient preference and clinical utility of symptom assessment scales. Methods: A prospective survey was conducted in an Irish palliative medicine inpatient unit.Consecutive cancer admissions were recruited within 7 days. Patients’ preferences were elicited with regards to 3 symptom assessment scales; categorical response (CRS), numerical rating (NRS), and visual analogue (VAS), across 3 common symptoms; appetite loss, pain, and tiredness. Participants selected their preferred scale per symptom. We determined the clinical utility of each scale, defined by ease of completion as judged by an observer. Results: 100 participants wererecruited,aged 38-93 years (x̅ = 71 years; SD=11.6). Median European Cooperative Oncology Group (ECOG) score was 2 (range 0-4). Participants preferred CRS for appetite loss (48%) and tiredness (40%), and NRS for pain (44%). VAS was consistently the least preferred measure. Scale preference was fully consistent across symptoms for 52% of patients, with just 4% choosing a different scale per symptom. There was moderate agreement between participant scale preference and ease of completion as determined by observer (Pain: K=0.486; Fatigue: K=0.452; Appetite loss K=0.364). Conclusions: (1) Most participants had a specific scale preference which was consistent across symptoms, (2) CRS was preferred overall, (3) Participants did not need to experience a symptom to have a preference, (4) VAS should be used with caution in hospice clinical care or research, (4) Symptom assessment scales should be carefully selected for clinical and research purposes.


2007 ◽  
Vol 25 (32) ◽  
pp. 5087-5093 ◽  
Author(s):  
Kathleen Gondek ◽  
Pierre-Philippe Sagnier ◽  
Kim Gilchrist ◽  
J. Michael Woolley

Assessing patient-reported outcomes (PROs) in clinical trials is of interest to clinicians, patients, regulators, and industry. The use and impact of PROs is a growing area of methodologic research, particularly as they relate to tumor types, biomarkers, and various patient populations and cultures. Both the US Food and Drug Administration (FDA) and European Agency for the Evaluation of Medicinal Products in recent guidance have acknowledged the need to account for treatment-related impact on patient symptoms and/or health-related quality of life (HRQOL). Clinical research likely reflects the informative value of PROs. A search of www.clinicaltrials.gov , the FDA Web site, and product package inserts was conducted to assess the inclusion of symptom assessment and HRQOL within industry-sponsored clinical trials in cancer and approved cancer therapies and their respective product labels. Overall, there were 2,704 industry-sponsored oncology trials, of which 322 (12%) included a PRO measure. Of the 70 FDA new or revised labels, only six package inserts include PRO data. Symptoms were assessed uniformly across the phases of clinical trials, whereas HRQOL assessment increased in the later phases of clinical trials. Collecting PRO data can enhance our understanding of cancer burden and the impact of interventions on patients' lives.


2020 ◽  
pp. bmjspcare-2020-002220
Author(s):  
Lisa Barbera ◽  
Rinku Sutradhar ◽  
Craig C Earle ◽  
Doris Howell ◽  
Nicole Mittman ◽  
...  

BackgroundIn 2007, Cancer Care Ontario began standardised symptom assessment as part of routine care using the Edmonton Symptom Assessment System (ESAS).AimThe purpose of this study was to evaluate the impact of ESAS on receipt of palliative care when compared with a matched group of unexposed patients.DesignA retrospective-matched cohort study examined the impact of ESAS screening on initiation of palliative care services provided by physicians or homecare nurses. The study included adult patients diagnosed with cancer between 2007 and 2015. Exposure was defined as completing ≥1 ESAS during the study period. Using 4 hard and 14 propensity score-matched variables, patients with cancer exposed to ESAS were matched 1:1 to those who were not. Matched patients were followed from first ESAS until initiation of palliative care, death or end of study.ResultsThe final cohort consisted of 204 688 matched patients with no prior palliative care consult. The pairs were well matched. The cumulative incidence of receiving palliative care within the first 5 years was higher among those exposed to ESAS compared with those who were not (27.9% (95% CI: 27.5% to 28.2%) versus 27.9% (95% CI: 27.5% to 28.2%)), when death is considered as a competing event. In the adjusted cause-specific Cox proportional hazards model, ESAS assessment was associated with a 6% increase in palliative care services (HR: 1.06, 95% CI: 1.04 to 1.08).ConclusionWe have demonstrated that patients exposed to ESAS were more likely to receive palliative care services compared with patients who were not exposed. This observation provides real-world data of the impact of routine assessment with a patient-reported outcome.


2020 ◽  
Vol 38 (15_suppl) ◽  
pp. e14154-e14154
Author(s):  
Adam John Gadzinski ◽  
Isabelle O. Abarro ◽  
Blair Stewart ◽  
John L. Gore

e14154 Background: Nearly 20% of Americans live in rural communities. These individuals face barriers to accessing cancer care, including prevalent poverty and substantial travel burden to seeing cancer providers. We aimed to assess the impact of a rurally focused telemedicine program on patient outcomes in our urologic oncology outpatient clinic. Methods: We prospectively identified patients from rural Washington State, or who lived outside Washington, with a known or suspected urological malignancy being evaluated at the University of Washington Urology Clinic via an in person clinic or a telemedicine appointment. Patients were invited to complete a post-visit survey that assessed satisfaction, travel time, costs, and work absenteeism. We compared patient-reported outcomes between those seen as in-person versus telemedicine visits. Results: We invited 291 eligible patients from June 2019 – February 2020 to participate, 140 patients (48%) completed the survey. One-hundred and thirty-three patients had in person visits and 7 had telemedicine visits. Median age was 68, male 86%, and 69% Caucasian. Eighty-seven patients (62%) were from rural Washington; the remainder resided out-of-state. Patients were being evaluated for prostate cancer (57%), kidney cancer (18%), urothelial cancer (24%), and testis cancer (1%). Patient-reported outcomes are displayed in Table. Seventeen patients coming for in-person visits (13%) paid ≥ $1000 in total travel costs. No differences were noted in patient satisfaction. Conclusions: Patients traveling to our clinic from out-of-state and rural Washington incur significant travel time, costs, and time away from work to receive outpatient urologic cancer care. Telemedicine provides a medium for cancer care delivery that eliminates the significant travel burden associated with in person clinic appointments. [Table: see text]


2021 ◽  
Vol 39 (6_suppl) ◽  
pp. 200-200
Author(s):  
Adam John Gadzinski ◽  
Isabelle O. Abarro ◽  
Blair Stewart ◽  
John L. Gore

200 Background: Nearly 20% of Americans live in rural communities. These individuals face barriers to accessing cancer care, including prevalent poverty and substantial travel burden to seeing cancer providers. We aimed to assess the impact of a rurally focused telemedicine program on patient outcomes in our urologic oncology outpatient clinic. Methods: We prospectively identified patients from rural Washington State, or who lived outside Washington, with a known or suspected urological malignancy being evaluated at the University of Washington Urology Clinic via an in person clinic or a telemedicine appointment. Patients were invited to complete a post-visit survey that assessed satisfaction, travel time, costs, and work absenteeism. We compared patient-reported outcomes between those seen as in-person versus telemedicine visits. Results: We invited 1453 eligible patients from August 2019–July 2020 to participate; 615 patients (42%) completed the survey. 198 patients had in person visits and 417 had telemedicine visits. Median age was 68, 89% were male, and 73% were white. 525 patients (85%) were from Washington; the remainder resided out-of-state. Patients were being evaluated for prostate cancer (62%), kidney cancer (14%), urothelial cancer (22%), and testis cancer (2%). Patient-reported outcomes are displayed in Table. Twenty-two patients coming for in-person visits (11%) paid ≥ $1000 in total travel costs. No differences were noted in patient satisfaction between in-person and telemedicine visit types. Conclusions: Patients traveling to our clinic from out-of-state and rural Washington incur significant travel time, costs, and time away from work to receive outpatient urologic cancer care. Telemedicine provides a medium for cancer care delivery that eliminates the significant travel burden associated with in-person clinic appointments. [Table: see text]


2019 ◽  
Vol 17 (3.5) ◽  
pp. QIM19-136 ◽  
Author(s):  
Allison Matthews ◽  
Surbhi Sidana ◽  
Lauren Seymour ◽  
Nancy Pick ◽  
James Pringnitz ◽  
...  

Background: The patient/caregiver experience during CAR-T therapy is stressful, overwhelming, terrifying, and often a patient’s last treatment option. The Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery Innovation and Design team has worked with the CAR-T therapy clinical team to develop a patient experience that provides patients with a sense of caring, supportive environment, timely knowledge, and realistic expectations. Using a human-centered design approach, the Innovation and Design team worked with patients and caregivers to understand latent and unspoken needs in order to develop an ideal CAR-T therapy patient journey. Methods: With qualitative interviewing techniques, patient observation, and low fidelity experimentation, 21 patients/caregiver pairs were interviewed throughout their CAR-T therapy experience in 2018. Patients were interviewed at several touch points as well as encouraged to reach out to the Innovation and Design team at any point with reflections on their experiences. Patients were recruited as they began their evaluation phase for CAR-T therapy. The interviews were unscripted to allow for a breadth of discovery by not constraining the conversations to previously developed themes. As themes emerged from patient/caregiver interviews, artifacts and interventions were designed to alleviate pain points and improve the patient/caregiver experience. These artifacts and interventions were integrated into the clinical processes in real time and patient/caregivers were interviewed to understand the impact of these activities. Results: Several themes emerged from qualitative interviews with patients and caregivers. From the themes, interventions were developed. We were able to demonstrate a qualitative improvement in patient/caregiver experience through these interventions (Figure 1). Conclusions: Patients/caregivers undergoing CAR-T therapy have unique issues surrounding the logistics of care, emotional burden, and physical effects of treatment. We implemented processes to address these issues and observed a qualitative improvement via patient interviews/feedback. Ongoing work includes optimizing remote monitoring, digital platforms for patient education, and a quantitative study looking at patient reported outcomes (PROs) in such patients. To our knowledge, this is the first report for care delivery optimization in real-world practice for this new therapy.


2020 ◽  
Author(s):  
Benjamin Chaix ◽  
Jean-Emmanuel Bibault ◽  
Guillaume Delamon ◽  
Mickaël Neraal ◽  
Julien Moussalli ◽  
...  

BACKGROUND There are many scales for screening or assessing the impact of a disease. These scales are generally used to diagnose or assess the severity of a disease and are carried out by doctors. The Vik Migraine chatbot helps patients suffering from headaches through personalized text messages, it could be used to collect patient-reported outcomes. OBJECTIVE The aims of this study were (1) to assess the feasibility of collecting a chatbot-mediated reference scale, (2) perform a remote diagnosis of the severity of the migraines and (3) assess the patient satisfaction and engagement with the chatbot. METHODS This study was conducted in France from December 2019 to March 2020. Voluntary users of the chatbot Vik Migraine were recruited online. They had to be adults and suffer from chronic migraines. An adapted version of the IHS questionnaire was presented to the participants by text messages. The Lickert scale ranging from 1 to 5 was used to assess overall satisfaction with the use of Vik Migraine. RESULTS We included 636 participants with migraines or headaches. A total of 89.94% (572) participants had fully completed the IHS questionnaire (8 items), 4.72% (30) had partially completed it and 5.35% (34) had refused to complete it. The evaluation of overall satisfaction shows that a total of 80.7% (513) of users agreed or strongly agreed with the affirmation that Vik Migraine provides quality answers about the pathology or its information. CONCLUSIONS We hypothesized that a virtual assistant built to support migraine patients could be used to retrieve patient data remotely, such as medical assessment scales. The study confirmed this hypothesis and showed that users were strongly engaged through to chatbot: out of the total number of participants, we observed a very low number of uncompleted questionnaires.


2011 ◽  
Vol 29 (4_suppl) ◽  
pp. 551-551
Author(s):  
X. S. Wang ◽  
C. Eng ◽  
D. R. Fogelman ◽  
M. Malekifar ◽  
K. E. Liao ◽  
...  

551 Background: Neuropathy attributed to oxaliplatin-based chemotherapy is a dose limiting factor in the administration of chemotherapy. With premising clinical outomes, bevacizumab (BV) has been added with colorectal cancer (CRC) patients in first line and second- line therapy. Although toxicity been well documented, there is no evidence of the impact of adding BV to oxaliplatin-based chemotherapy on patient's neuropathy development during therapy. Methods: The study enrolled 66 colorectal cancer patients naïve to oxaliplatin or to any microtubule stabilizing agents scheduled for oxaliplatin-based chemotherapy, 29 (44%) of whom also received BV. From first therapy cycle start date, patients rated symptoms weekly during chemotherapy via the M. D. Anderson Symptom Inventory (MDASI), and continued symptom assessment every two weeks for up to 48 weeks. Longitudinal symptom responses were analyzed by mixed-effect modeling which controlled for age, sex, staging, prior diabetes, and total cycles of chemotherapy received. All cases completed at least 2 cycles chemotherapy. Results: A third of the sample was female; 24% were older than 65 years; 59% with stage IV disease. The five most severe symptoms were numbness, fatigue, sleep disturbance, drowsiness, and distress on MDASI symptom items. The severity of patient-reported numbness/tingling, rated on MDASI, increased overtime in following 48 weeks after started therapy (p < 0.0001). Oxaliplatin-based therapy plus BV, compared to no BV in the regimen, resulted a significant lower severity on numbness/tingling during the study period (estimate = -1.1325, p = 0.0005). Older patients reported more numbness/tingling. In contrast, pain severity remained low during the initial cycles of therapy, but significantly increased over time during therapy. Therapy with or without BV did not produce differences in pain development. Conclusions: This prospective study suggests that adding BV to standard oxaliplitin-based therapy for CRC was associated with significantly reduced numbness/tingling development. This observation needs to be confirmed in larger studies. The mechanism(s) by which neuropathy could be attenuated by BV are unknown. No significant financial relationships to disclose.


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