scholarly journals Prevalence of Low-Value Care and Its Associations with Patient-Centered Outcomes in Dementia

2021 ◽  
pp. 1-13
Author(s):  
Moritz Platen ◽  
Steffen Flea ◽  
Anika Rädke ◽  
Diana Wucherer ◽  
Jochen René Thyrian ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Models Of Care ◽  
Adverse Outcomes ◽  
Future Research ◽  
Patient Centered ◽  
Treatment Pathways ◽  
Patient Reported ◽  
Evidence Based Treatments ◽  
Related Quality

Background: Low-value care (LvC) is defined as care unlikely to provide a benefit to the patient regarding the patient’s preferences, potential harms, costs, or available alternatives. Avoiding LvC and promoting recommended evidence-based treatments, referred to as high-value care (HvC), could improve patient-reported outcomes for people living with dementia (PwD). Objective: This study aims to determine the prevalence of LvC and HvC in dementia and the associations of LvC and HvC with patients’ quality of life and hospitalization. Methods: The analysis was based on data of the DelpHi trial and included 516 PwD. Dementia-specific guidelines, the “Choosing Wisely” campaign and the PRISCUS list were used to indicate LvC and HvC treatments, resulting in 347 LvC and HvC related recommendations. Of these, 77 recommendations (51 for LvC, 26 for HvC) were measured within the DelpHi-trial and finally used for this analysis. The association of LvC and HvC treatments with PwD health-related quality of life (HRQoL) and hospitalization was assessed using multiple regression models. Results: LvC was highly prevalent in PwD (31%). PwD receiving LvC had a significantly lower quality of life (b = –0.07; 95%CI –0.14––0.01) and were significantly more likely to be hospitalized (OR = 2.06; 95%CI 1.26–3.39). Different HvC treatments were associated with both positive and negative changes in HRQoL. Conclusion: LvC could cause adverse outcomes and should be identified as early as possible and tried to be replaced. Future research should examine innovative models of care or treatment pathways supporting the identification and replacement of LvC in dementia.

Systematic Nonpain Symptom Assessment and Management

2020 ◽  
pp. 167-177
Author(s):  
Hana Yu ◽  
Jennifer S. Scherer
Keyword(s):  
Quality Of Life ◽  
Kidney Disease ◽  
Sleep Disturbances ◽  
Future Research ◽  
Emotional Symptoms ◽  
Uremic Pruritus ◽  
Evidence Based Treatments ◽  
Related Quality ◽  
Health Related

Patients with advanced chronic kidney disease (CKD) suffer from a substantial burden of physical and emotional symptoms that adversely affect their health-related quality of life. Their number of symptoms when systematically evaluated is comparable to cancer patients. Overall symptom burden and severity are correlated directly with impaired quality of life and depression. Among the most frequent are fatigue, pain, pruritus, sleep disturbances and poor appetite. This chapter highlights one of the most common and troublesome of these symptoms affecting advanced CKD patients, particularly those with end-stage kidney disease: uremic pruritus. The epidemiology, pathophysiology, and current evidence-based treatments are discussed as a way to provide a practical guide for diagnosis and treatment. Lastly, areas for future research to improve symptom management in this growing, chronically ill population are identified.

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.

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.

Adaptation and cross-cultural validation of the Spanish version of the Thyroid-Related Quality-of-Life Patient-Reported Outcome (ThyPRO) questionnaire

2018 ◽  
Author(s):  
Lleo Ana Maria Gonzalez ◽  
Mauro Boronat Cortes ◽  
Ulla Feldt-Rasmussen ◽  
Carlos Rodriguez Perez ◽  
AEse Krogh Rasmussen ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Patient Reported Outcome ◽  
Cross Cultural ◽  
Spanish Version ◽  
Patient Reported ◽  
Related Quality ◽  
Cultural Validation

scholarly journals Vision-related quality of life in adults with severe peripheral vision loss: a qualitative interview study

2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Ryan Lange ◽  
Abigail Kumagai ◽  
Sara Weiss ◽  
Katherine B. Zaffke ◽  
Sherry Day ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Contrast Sensitivity ◽  
Qualitative Interviews ◽  
Well Being ◽  
Vision Impairment ◽  
Qualitative Interview Study ◽  
Patient Reported ◽  
Related Quality ◽  
The Impact

Abstract Background Existing patient-reported outcome (PRO) measures may not be relevant to the full range of functional and vision-related quality of life (VR-QOL) concerns of individuals with vision impairment due to severe peripheral field loss (PFL). Measurement of VR-QOL in severe PFL is important in order to determine the effectiveness of vision rehabilitation interventions for this population. The purpose of this study was to characterize the impact of severe PFL due to retinitis pigmentosa (RP) and glaucoma on VR-QOL as the initial phase in the development of a novel PRO measure. Methods Individuals with severe PFL due to RP or glaucoma were recruited from the Kellogg Eye Center and the Association for the Blind and Visually Impaired. Participants completed semi-structured qualitative interviews, the Impact of Vision Impairment (IVI) questionnaire and the RAND 36-Item Health Survey. Interviews were analyzed by two coders using thematic analysis. A matrix analysis was conducted to compare VR-QOL by cause of severe PFL. Sample size was determined by thematic saturation. Results The study included 37 participants (19 RP, 18 glaucoma). Median best-corrected visual acuity for those with RP and glaucoma was 20/40 and 20/27.5, while Pelli-Robson contrast sensitivity was 1.2 log contrast sensitivity (logCS) and 1.1 logCS, respectively. Median domain scores on the IVI (reading, mobility, well-being) ranged from a low of − 0.2 to a high of 0.7 logits in those with RP and from 0.5 to 1.2 logits in those with glaucoma. Qualitative interviews identified six VR-QOL themes relevant across participants with both RP and glaucoma, including activity limitations, driving, emotional well-being, reading, mobility, and social function. VR-QOL concerns were largely consistent among those with severe PFL due to RP and glaucoma. These overarching themes contained content relevant to specific challenges related to severe PFL. Conclusions There are commonly occurring VR-QOL concerns among individuals with severe PFL due to RP and glaucoma. The outlined themes will serve as the basis for development of the Low Vision Severely Constricted Peripheral Eyesight (LV-SCOPE) Questionnaire.

Effect of Augmentative Technology on Communication and Quality of Life After Tracheostomy or Total Laryngectomy

2021 ◽  
pp. 019459982110137
Author(s):  
Catherine T. Haring ◽  
Janice L. Farlow ◽  
Marie Leginza ◽  
Kaitlin Vance ◽  
Anna Blakely ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Total Laryngectomy ◽  
Electronic Communication ◽  
Well Being ◽  
Chi Square ◽  
Communication Device ◽  
Patient Reported ◽  
Communication Devices ◽  
Related Quality

Objective Surgical procedures that render patients acutely aphonic can cause them to experience significant anxiety and distress. We queried patient perceptions after tracheostomy or laryngectomy and investigated whether introducing augmentative technology was associated with improvement in patient-reported outcomes. Methods Participants included hospitalized patients who acutely lost the ability to speak due to tracheostomy or total laryngectomy from April 2018 to December 2019. We distributed questions regarding the patient communication experience and relevant questions from the validated V-RQOL questionnaire (Voice-Related Quality of Life). Patients were offered a tablet with the electronic communication application Verbally. Pre- and postintervention groups were compared with chi-square analyses. Results Surveys were completed by 35 patients (n = 18, preintervention; n = 17, postintervention). Prior to using augmentative technology, 89% of patients who were aphonic reported difficulty communicating, specifically noting breathing or suctioning (56%), treatment and discharge plans (78%), or immediate needs, such as pain and using the bathroom (39%). Communication difficulties caused anxiety (55%), depression (44%), or frustration (62%), and 92% of patients were interested in using an electronic communication device. Patients reported less trouble communicating after the intervention versus before (53% vs 89%, P = .03), including less difficulty communicating about treatment or discharge plans (35% vs 78%, P < .01). V-RQOL scores were unchanged. Discussion Acute loss of phonation arising from surgery can be highly distressing for patients, and use of augmentative technology may alleviate some of these challenges by improving communication. Further studies are needed to identify what additional strategies may improve overall well-being. Implications for Practice Electronic communication devices may benefit patients with acute aphonia.

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