Cancer symptom scale preference: One size to fit all?

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.

2019 ◽  
Vol 3 (7) ◽  
pp. 934-938 ◽  
Author(s):  
Eli L. Diamond ◽  
Anne S. Reiner ◽  
Justin J. Buthorn ◽  
Elyse Shuk ◽  
Allison J. Applebaum ◽  
...  

Abstract Erdheim-Chester disease (ECD) is an ultra-rare hematologic neoplasm characterized by somatic mutations of the MAPK pathway and by accumulation of lesional histiocytes within tissues. Clinical phenotypes and sites of disease involvement are heterogenous in ECD, and no tool exists for systematic and comprehensive assessment of ECD symptomatology. We describe a collaborative effort among ECD specialists, patient-reported outcome (PRO) methodologists, and ECD patients to develop the Erdheim-Chester Disease Symptom Scale (ECD-SS): a symptom inventory for clinical ECD care and evaluation of ECD therapies. Methodologically rigorous focus groups led to the identification of 63 ECD symptoms in 6 categories, incorporated into the ECD-SS with respect to both severity and frequency. Among 50 ECD patients participating in a prospective registry study completing the ECD-SS, 46 (92%) reported neurological/psychological symptoms, 29 (58%) reported pain, and at least one-half reported mood symptoms, memory problems, or fatigue. Symptoms were highly frequent or almost constant regardless of their severity. The ECD-SS is a rigorously developed, patient-centered tool that demonstrates the wide and previously unappreciated burden of symptomatology experienced by ECD patients. Further studies will refine the symptom inventory and define its psychometric properties and role in clinical care and investigation in the context of ECD.


2016 ◽  
Vol 8 (2) ◽  
pp. 198-203 ◽  
Author(s):  
Kirby Jeter ◽  
Siobhan Blackwell ◽  
Lucy Burke ◽  
David Joyce ◽  
Catherine Moran ◽  
...  

ObjectivesPatients with advanced cancer do not report all symptoms, so assessment is best done systematically. However, for such patients, completion rates of some symptom instruments are <50%. Symptoms can be quantified by various scales including the Categorical Response Scale (CRS), Numerical Rating Scale (NRS) and Visual Analogue Scale (VAS). Patient preferences for CRS, NRS and VAS in symptom assessment and their clinical utility in 3 cancer symptoms: pain, tiredness and appetite loss were determined.MethodsA prospective survey was conducted involving cancer admissions to a 36-bed palliative care unit.Results100 inpatients were recruited, aged 38–93 years (x̅ =71 years; SD=11.6), with median Eastern Cooperative Oncology Group (ECOG) scores of 2 (range 0–4). VAS was the least preferred measure. 52% of patients choose the same scale for all 3 symptoms and 44% for 2, with 4% choosing a different individual scale per symptom. There was moderate agreement between participant scale preference and observer determined ease of scale completion (loss of appetite: κ=0.36; pain: κ=0.49; tiredness: κ=0.45). Participants preferred CRS for appetite loss (48%) and tiredness (40%) and NRS for pain (44%).ConclusionsVAS was the least favoured scale and should be used cautiously in this population. Most participants had a scale preference with high intrapatient consistency between scales. CRS was preferred for appetite loss and tiredness and NRS for pain. Consideration should be given to individualised cancer symptom assessment according to patient scale preference.


2020 ◽  
Vol 46 (Supplement_1) ◽  
pp. S61-S61
Author(s):  
Mariia Kaliuzhna ◽  
Matthias Kirschner ◽  
Fabien Carruzzo ◽  
Matthias Hartmann ◽  
Bischof Martin ◽  
...  

Abstract Background Negative symptoms of schizophrenia are suggested to map onto two distinct factors – amotivation and diminished expression, which relate to different aspects of behaviour and neural activity. Most research in patients with schizophrenia is conducted with broad symptom assessment scales, such as the PANSS, for which factor solutions allowing the distinction between amotivation and diminished expression have only recently been reported. We aimed to establish whether the PANSS factor structure corresponds to the well-established two-factor structure of the Brief Negative Symptom Scale (BNSS) and whether it allows distinguishing specific behavioural and neuronal correlates of amotivation. Methods In study 1 (N=120) we examined the correlations between the PANSS factors and the BNSS factors. In study 2 (N=31) we examined whether PANSS amotivation is specifically associated with reduced willingness to work for reward in an effort-based decision making task. In study 3 (N=43) we investigated whether PANSS amotivation is specifically correlated with reduced ventral striatal activation during reward anticipation using functional magnetic resonance imaging. Results On the clinical level, the PANSS amotivation and diminished expression were highly correlated with their BNSS counterparts. On the behavioural level, PANSS amotivation factor but not the diminished expression factor was specifically associated with reduced willingness to invest effort to obtain a reward. On the neural level, PANSS amotivation was specifically associated with ventral striatal activation during reward anticipation. Discussion Our data confirm that the two domains of negative symptoms can be measured with the PANSS and are linked to specific aspects of behaviour and brain function. To our knowledge, this is the first study employing behavioural and neural measures to validate a new approach to clinical measurement of negative symptoms. Our results warrant a re-analysis of previous work that used the PANSS to further substantiate the distinction between the two factors in behavioural and neuroimaging studies.


2021 ◽  
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.


2015 ◽  
Vol 15 (2) ◽  
pp. 190-200 ◽  
Author(s):  
Masaaki Matsushima ◽  
Ichiro Yabe ◽  
Koji Oba ◽  
Ken Sakushima ◽  
Yasunori Mito ◽  
...  

2021 ◽  
Author(s):  
George Hripcsak ◽  
David J Albers

BACKGROUND Background: It would be useful to be able to assess the utility of predictive models of continuous values before clinical trials are carried out. OBJECTIVE Objective: To compare metrics to assess the potential clinical utility of models that produce continuous value forecasts. METHODS Methods: We ran a set of data assimilation forecast algorithms on time series of glucose measurements from intensive care unit patients. We evaluated the forecasts using four sets of metrics: glucose root mean square error, a set of metrics on a transformed glucose value, the estimated effect on clinical care based on an insulin guideline, and a glucose measurement error grid (Parkes grid). We assessed correlation among the metrics and created a set of factor models. RESULTS Results: The metrics generally correlated with each other, but those that estimated the effect on clinical care correlated with the others the least and were generally associated with their own independent factors. The other metrics appeared to separate into those that emphasized errors in low glucose versus errors in high glucose. The Parkes grid was well correlated with the transformed glucose but not the estimation of clinical care. CONCLUSIONS Discussion: Our results indicate that we need to be careful before we assume that commonly used metrics like RMS error in raw glucose or even metrics like the Parkes grid that are designed to measure importance of differences will correlate well with actual effect on clinical care processes. A combination of metrics appeared to explain the most variance between cases. As prediction algorithms move into practice, it will be important to measure actual effects.


2021 ◽  
Author(s):  
Rochelle K Rosen ◽  
Stephanie C Garbern ◽  
Monique Gainey ◽  
Ryan Lantini ◽  
Sabiha Nasrin ◽  
...  

BACKGROUND The availability of mobile clinical decision-support (CDS) tools has grown substantially with the increased prevalence of smartphone devices and applications (apps). Though healthcare providers express interest in integrating mobile health (mHealth) technologies into their clinical settings, concerns raised include perceived disagreements between information provided by mobile CDS tools and standard guidelines. Despite their potential to transform health care delivery, there remains limited literature on the provider’s perspective of the clinical utility of mobile CDS tools for improving patient outcomes, especially in low- and middle- income countries. OBJECTIVE The aim of this study is to describe providers’ perceptions about the utility of a mobile CDS tool accessed via a smartphone app for diarrhea management in Bangladesh. In addition, feedback was collected on preliminary components of the mobile CDS tool to address clinicians’ concerns and incorporate their preferences. METHODS From November to December 2020, qualitative data were gathered through eight virtual focus group discussions with physicians and nurses from three Bangladeshi hospitals. Each discussion was conducted in the local language, Bangla, and audio recorded for transcription and translation by the local research team. Transcripts and codes were entered into NVivo12 and applied thematic analysis was used to identify themes that explore the clinical utility of a mHealth app to assess dehydration severity in patients with acute diarrhea. Summaries of concepts and themes were generated from reviews of the aggregated coded data, and thematic memos were written and used for the final analysis. RESULTS Of the 27 focus group participants, 14 were nurses and 13 doctors; 15 worked at a diarrhea specialty hospital and 12 worked in government district or subdistrict hospitals. The participants’ experience in their current position ranged from 2 to 14 years, with an average of 10.3 years. Key themes from the qualitative data analysis, including: current experience with CDS, overall perception of the app utility and its potential role in clinical care, barriers and facilitators to app use, considerations of overtreatment and undertreatment, and guidelines for the app’s clinical recommendations. CONCLUSIONS Participants were positive about the mHealth app and its potential to inform diarrhea management. They provided detailed feedback, which developers used to further the design and programming. Participants felt that the tool would initially take time to use, but once learned could be useful during epidemic cholera. Some felt that clinical experience remains an important part of treatment that can be supplemented, but not replaced, by a CDS tool. Additionally, diagnostic information, including mid-upper arm circumference and blood pressure, might not be available to directly inform programming decisions. These formative qualitative data provided timely and relevant feedback to improve the utility of a CDS tool for diarrhea treatment in Bangladesh.


2017 ◽  
Vol 45 (5) ◽  
pp. 1187-1194 ◽  
Author(s):  
Alicia M. Sufrinko ◽  
Gregory F. Marchetti ◽  
Paul E. Cohen ◽  
R.J. Elbin ◽  
Valentina Re ◽  
...  

Background: A sport-related concussion (SRC) is a heterogeneous injury that requires a multifaceted and comprehensive approach for diagnosis and management, including symptom reports, vestibular/ocular motor assessments, and neurocognitive testing. Purpose: To determine which acute (eg, within 7 days) vestibular, ocular motor, neurocognitive, and symptom impairments predict the duration of recovery after an SRC. Study Design: Cohort study (prognosis); Level of evidence, 2. Methods: Sixty-nine patients with a mean age of 15.3 ± 1.9 years completed a neurocognitive, vestibular/ocular motor, and symptom assessment within 7 days of a diagnosed concussion. Patients were grouped by recovery time: ≤14 days (n = 27, 39.1%), 15-29 days (n = 25, 36.2%), and 30-90 days (n = 17, 24.6%). Multinomial regression was used to identify the best subset of predictors associated with prolonged recovery relative to ≤14 days. Results: Acute visual motor speed and cognitive-migraine-fatigue symptoms were associated with an increased likelihood of recovery times of 30-90 days and 15-29 days relative to a recovery time of ≤14 days. A model with visual motor speed and cognitive-migraine-fatigue symptoms within the first 7 days of an SRC was 87% accurate at identifying patients with a recovery time of 30-90 days. Conclusion: The current study identified cognitive-migraine-fatigue symptoms and visual motor speed as the most robust predictors of protracted recovery after an SRC according to the Post-concussion Symptom Scale, Immediate Post-concussion Assessment and Cognitive Testing, and Vestibular/Ocular Motor Screening (VOMS). While VOMS components were sensitive in identifying a concussion, they were not robust predictors for recovery. Clinicians may consider particular patterns of performance on clinical measures when providing treatment recommendations and discussing anticipated recovery with patients.


2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 218-218
Author(s):  
Carrie Tompkins Stricker ◽  
Beth Faiman ◽  
Diana Harris ◽  
Nicole Rozario

218 Background: Rapidly emerging therapeutics for multiple myeloma (MM) have diverse and sometimes life-threatening toxicities, underscoring the need for proactive screening, assessment, and management to mitigate symptoms and adverse events [AEs] (i.e., “supportive care (SC) practices”). Little is known about the real-world systematic use of such strategies in routine MM clinical care. A 3 center pilot study aims to describe documented adherence to evidence-based SC practices, and then intervene with a novel ePRO and supportive care planning system (CPS) technology designed to improve adherence. Methods: 90 patients and 90 controls with MM from 3 sites are being evaluated in this pilot study. A scorecard to measure provider use of evidence-based SC practices, at the patient level, was developed by an interdisciplinary team, using an iterative process of literature review and a modified Delphi technique to gain metric consensus. The scorecard is applied to medical records of intervention subjects and controls over an 8-12 week period. Results: Scorecards have been completed to date for 20 historical controls & 7 intervention subjects; remaining to be complete by meeting. For controls, screening for specific symptoms was fairly consistent, but documentation of detailed assessments (e.g., severity, functional impact) and management strategies was poor. For intervention subjects to date, screening almost always was documented, and both detailed assessment and intervention was better than for controls in most cases. See table. Conclusions: For controls, providers regularly documented symptom/AE screening, yet detailed assessments and evidence of interventions were inconsistently documented. Barriers may include the limited availability of effective interventions for symptoms such as CIPN & fatigue, as well as time barriers to effective symptom assessment and management, and its documentation. Almost all metrics were better in intervention subjects to date. Although documentation may not reflect actual practice, improvement in detailed assessment and management strategies is likely needed, and a novel CPS technology may improve this state of affairs; evaluation ongoing. [Table: see text]


Sign in / Sign up

Export Citation Format

Share Document