Frequency and burden of potentially treatable symptoms in glioma patients with stable disease: a classical and a network approach

2021 ◽  
Author(s):  
Jantine Geertruida Röttgering ◽  
Vera Belgers ◽  
Mathilde Kouwenhoven ◽  
Maaike Schuur ◽  
Tjeerd J. Postma ◽  
...  
Keyword(s):  
Stable Disease ◽  
Symptom Burden ◽  
Correlation Coefficients ◽  
Future Research ◽  
Median Frequency ◽  
Patient Reported ◽  
Symptom Frequency ◽  
Partial Correlations ◽  
Related Quality ◽  
Health Related

Background: Glioma patients experience a multitude of symptoms, impacting health-related quality of life. We aimed to assess frequency and burden of patient-reported symptoms in glioma patients with stable disease and whether patients would consider treatment. We also explored how symptoms co-occur and interact within a network.Methods: Patients rated frequency and burden and whether they would consider treatment of seventeen symptoms. Correlations between frequency, burden, and considering treatment were evaluated with Kendall’s Tau correlation coefficients. Partial correlations between symptom frequency scores were visualized as a symptom network.Results: Fifty-two glioma patients with stable disease were included (31 grade II/III, 21 grade IV tumors). The top five symptoms were fatigue, memory problems, reduced physical fitness, concentration problems, and drowsiness. Fatigue had the highest median frequency, 4.5 with an interquartile range of 2.5, on a seven-point Likert scale. More than 50% of patients experienced three or more symptoms simultaneously. In a network, symptoms seem to cluster together in a Fatigue, Cognition and Anxiety cluster. Overall, about one-third of patients would consider treatment for at least one symptom. Considering treatment correlated only moderately with frequency and burden (range of correlations 0.24-0.57 and 0.28-0.61, respectively).Conclusion: Glioma patients with stable disease often experience multiple co-occurring symptoms with a high symptom burden. Despite the high prevalence of symptoms, the inclination to undergo treatment was relatively low. The most frequent and burdensome symptoms and the way they are interrelated and cluster together could serve as a roadmap for future research on symptom management and treatment.

scholarly journals Beyond Survival in AL amyloidosis: Identifying and Satisfying Patients’ Needs

Hemato ◽  
2022 ◽  
Vol 3 (1) ◽  
pp. 38-46
Author(s):  
Hamza Hassan ◽  
Vaishali Sanchorawala
Keyword(s):  
Cell Clone ◽  
Symptom Burden ◽  
Well Being ◽  
Future Research ◽  
Al Amyloidosis ◽  
Patient Centered ◽  
Related Quality ◽  
Health Related ◽  
Delays In Diagnosis ◽  
The Impact

The survivorship needs of patients with light-chain (AL) amyloidosis are complex, as is the diagnosis and treatment itself. Early diagnosis is critical in improving patient outcomes; however, given the nonspecific nature of the symptoms, most patients with AL amyloidosis require evaluation by multiple specialists, resulting in significant delays in diagnosis of up to 3 years. An early and accurate diagnosis can help reduce the psychological toll of the patient’s journey to diagnosis. Given the high symptom burden and complex process of diagnosis, it is not surprising that patients with AL amyloidosis report worse health-related quality of life than the general population. Organ dysfunction associated with AL amyloidosis also may make the treatment directed towards plasma cell clone difficult to tolerate, leading to morbidity and mortality. Furthermore, supportive care requires an integrated, multidimensional and patient-centered approach to improve survival and feelings of well-being, as organ responses lag behind hematologic responses. The impact of AL amyloidosis is often devastating for the patient and may last beyond the effects of treatment. Future research is needed to study and assess the needs of survivors of AL amyloidosis utilizing valid, reliable and standardized measures.

Computerized adaptive technology for the assessment of HRQOL of PD and CKD patients

2020 ◽  
pp. 089686082095996
Author(s):  
Fredric O Finkelstein ◽  
Monica Cimini ◽  
Susan H Finkelstein ◽  
Alan S Kliger
Keyword(s):  
Quality Of Life ◽  
Symptom Burden ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Health Related Quality ◽  
Adaptive Technology ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

This study was designed as a pilot study to see whether electronic patient-reported outcome measures using computer adaptive technology (CAT) could be successfully implemented in clinics caring for chronic kidney disease (CKD) and peritoneal dialysis (PD) patients. The results demonstrate the feasibility of using CAT on an iPad to assess the symptom burden and health-related quality of life of both PD and CKD patients.

Assessing Patients’ Unmet Palliative Care Needs With Tools for Assessment

2020 ◽  
pp. 49-57
Author(s):  
Chandra Thomas ◽  
Amanda Halpin
Keyword(s):  
Outcome Measures ◽  
Symptom Burden ◽  
Patient Reported Outcome Measures ◽  
Management Plan ◽  
Patient Reported Outcome ◽  
Care Needs ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

High symptom burden of living with kidney disease negatively impacts patients’ health-related quality of life, making it important to routinely screen for symptoms to identify their unmet needs. Research shows that clinicians are inaccurate at estimating symptoms of their patients; therefore, validated tools called patient-reported outcome measures have been developed to improve screening for and identification of troublesome symptoms patients are experiencing. Routinely incorporating patient-reported outcome measures will likely require some change to many current practices; utilizing a change management plan with appointed champion(s) and a supporting multidisciplinary team can help ensure the success of this practice transformation.

Health-Related Quality of Life in Sarcoidosis

2020 ◽  
Vol 41 (05) ◽  
pp. 716-732
Author(s):  
Ogugua Ndili Obi
Keyword(s):  
Quality Of Life ◽  
Patient Reported Outcome Measures ◽  
Future Research ◽  
Health Related Quality ◽  
Specific Patient ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
The Impact

AbstractHealth-related quality of life (HRQoL) describes an individual's perception of the impact of health, disease, and treatment on their quality of life (QoL). It is a reflection of how the manifestation of an illness and its treatment is personally experienced. Assessing HRQoL is particularly important in sarcoidosis because the attributable disease mortality is relatively low, and one of the major reasons for initiating treatment is to improve quality of life. HRQoL has been assessed in sarcoidosis using various generic and sarcoid-specific patient-reported outcome measures (PROMs). It is important that both the direct and indirect effects of the disease, as well as potential toxicities of therapy, are captured in the various PROMs used to assess HRQoL in sarcoidosis. This article provides a general overview of HRQoL in patients with sarcoidosis. It describes the various PROMs used to assess HRQoL in sarcoidosis and addresses the various factors that influence HRQoL in sarcoidosis. Specific attention is paid to fatigue, small fiber neuropathy, corticosteroid therapy, and other disease-specific factors that affect HRQoL in sarcoidosis. It also provides an insight into interventions that have been associated with improved HRQoL in sarcoidosis and offers suggestions for future research in this important area.

scholarly journals Patient-Reported Experiences After Acute Kidney Injury Across Multiple Health-Related Quality-of-Life Domains

Kidney360 ◽  
2021 ◽  
pp. 10.34067/KID.0002782021
Author(s):  
Galen E. Switzer ◽  
Chethan M. Puttarajappa ◽  
Sandra L. Kane-Gill ◽  
Linda F. Fried ◽  
Kaleab Z. Abebe ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Acute Kidney Injury ◽  
Emotional Health ◽  
Kidney Injury ◽  
Future Research ◽  
Health Related Quality ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

Background: Investigations of health-related quality-of life (HRQoL) in acute kidney injury (AKI) have been limited in number, size, and domains assessed. We surveyed AKI survivors to describe the range of HRQoL AKI-related experiences and examine potential differences in AKI impacts by gender and age at AKI episode. Methods: AKI survivors among American Association of Kidney Patients (AAKP) completed an anonymous online survey in September 2020. We assessed: (1) socio-demographics, (2) impacts of AKI - physical, emotional, social, and (3) perceptions about interactions with healthcare providers using quantitative and qualitative items. Results: Respondents were 124 adult AKI survivors. 84% reported that the AKI episode was very/extremely impactful on physical/emotional health. Fifty-seven percent reported being very/extremely concerned about AKI effects on work and 67% were concerned about AKI effects on family. Only 52% of respondents rated medical team communication as very/extremely good. Individuals ages 22-65 at AKI episode were more likely than younger/older counterparts to rate the AKI episode as highly impactful overall (90% vs 63% younger and 75% older individuals; p = 0.040), more impactful on family (78% vs 50% and 46%; p = 0.008) and more impactful on work (74% vs 38% and 10%; p < 0.001). Limitations of this work include convenience sampling, retrospective data collection, and unknown AKI severity. Conclusions: These findings are a critical step forward in understanding the range of AKI experiences/consequences. Future research should incorporate more comprehensive HRQoL measures and healthcare professionals should consider providing more information in their patient communication about AKI and follow-up.

scholarly journals Routinely measuring symptom burden and health-related quality of life in dialysis patients: first results from the Dutch registry of patient-reported outcome measures

2020 ◽  
Author(s):  
Esmee M van der Willik ◽  
Marc H Hemmelder ◽  
Hans A J Bart ◽  
Frans J van Ittersum ◽  
Judith M Hoogendijk-van den Akker ◽  
...  
Keyword(s):  
Symptom Burden ◽  
Response Rates ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Dialysis Patients ◽  
Patient Reported ◽  
Related Quality ◽  
First Results ◽  
Health Related

Abstract Background The use of patient-reported outcome measures (PROMs) is becoming increasingly important in healthcare. However, incorporation of PROMs into routine nephrological care is challenging. This study describes the first experience with PROMs in Dutch routine dialysis care. Methods A pilot study was conducted in dialysis patients in 16 centres. Patients were invited to complete PROMs at baseline and 3 and 6 months. PROMs consisted of the 12-item short-form and Dialysis Symptom Index to assess health-related quality of life (HRQoL) and symptom burden. Response rates, HRQoL and symptom burden scores were analysed. Qualitative research methods were used to gain insight into patients’ views on using PROMs in clinical practice. Results In total, 512 patients (36%) completed 908 PROMs (24%) across three time points. Response rates varied from 6 to 70% among centres. Mean scores for physical and mental HRQoL were 35.6 [standard deviation (SD) 10.2] and 47.7 (SD 10.6), respectively. Patients experienced on average 10.8 (SD 6.1) symptoms with a symptom burden score of 30.7 (SD 22.0). Only 1–3% of the variation in PROM scores can be explained by differences between centres. Patients perceived discussing their HRQoL and symptom scores as insightful and valuable. Individual feedback on results was considered crucial. Conclusions The first results show low average response rates with high variability among centres. Dialysis patients experienced a high symptom burden and poor HRQoL. Using PROMs at the individual patient level is suitable and may improve patient–professional communication and shared decision making. Further research is needed to investigate how the collection and the use of PROMs can be successfully integrated into routine care to improve healthcare quality and outcomes.

scholarly journals Patient-reported outcome measures in the care of in-centre hemodialysis patients

2021 ◽  
Vol 5 (S2) ◽  
Author(s):  
Sara N. Davison ◽  
Scott Klarenbach ◽  
Braden Manns ◽  
Kara Schnick-Makaroff ◽  
Robert Buzinski ◽  
...  
Keyword(s):  
Clinical Practice ◽  
Outcome Measures ◽  
Symptom Burden ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Clinical Workflow ◽  
Level Of Functioning ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

AbstractKidney failure requiring dialysis is associated with high symptom burden and low health-related quality of life (HRQL). Patient-reported outcome measures (PROMs) are standardized instruments that capture patients’ symptom burden, level of functioning, and HRQL. The routine use of PROMs can be used to monitor aspects of patients’ health that may otherwise be overlooked, inform care planning, and facilitate the introduction of treatments. Incorporating PROMs into clinical practice is an appropriate strategy to engage patients and enhance their role in decisions regarding their care and outcomes. However, the implementation of PROMs measurement and associated interventions can be challenging given the nature of clinical practice in busy hemodialysis units, the variations in organization and clinical workflow across units, as well as regional programs. Implementing PROMs and linking these with actionable treatment aids to alleviate bothersome symptoms and improve patients’ wellbeing is key to improving patients’ health. Other considerations in implementing PROMs within a hemodialysis setting include integration into electronic medical records, purchase and configuration of electronic tools (i.e., tablets), storage and disinfection of such tools, and ongoing IT resources. It is important to train clinicians on the practical elements of using PROMs, however there is also a need to engage clinicians to use PROMs on an ongoing basis. This article describes how PROMs have been implemented at in-centre hemodialysis units in Alberta, Canada, addressing each of these elements.

Association of Physical Morbidity and Health-Related Quality of Life in a Representative Sample of Older German People

2018 ◽  
Vol 25 (4) ◽  
pp. 140-151
Author(s):  
Markus A. Wirtz ◽  
Matthias Morfeld ◽  
Elmar Brähler ◽  
Andreas Hinz ◽  
Heide Glaesmer
Keyword(s):  
Quality Of Life ◽  
Representative Sample ◽  
Short Form ◽  
Physical Symptoms ◽  
German Population ◽  
Health Related Quality ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

Abstract. The association between health-related quality of life (HRQoL; Short-Form Health Survey-12; SF-12) and patient-reported morbidity-related symptoms measured by the Patient Health Questionnaire-15 (PHQ-15) is analyzed in a representative sample of older people in the general German population. Data from 1,659 people aged 60 to 85 years were obtained. Latent class analysis identified six classes of patients, which optimally categorize clusters of physical symptoms the participants reported: musculoskeletal impairments (39.8%), healthy (25.7%), musculoskeletal and respiratory/cardiac impairments (12.8%), musculoskeletal and respiratory impairments, along with bowel and digestion problems (12.9%), general impairments (4.9%), and general impairments with no bowel and digestion problems (4.8%). The participants’ SF-12 Physical Health Scores (η2 = .39) and their Mental Health Scores (η2 = .28) are highly associated with these latent classes. These associations remain virtually identical after controlling for age. The results provide evidence that profiles of patient-reported physical impairments correspond strongly with reduced HRQoL independently from aging processes.

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