scholarly journals Systematic review of patient-reported measures of treatment burden in stroke

BMJ Open ◽  
2019 ◽  
Vol 9 (9) ◽  
pp. e029258 ◽  
Author(s):  
Katie I Gallacher ◽  
Terry Quinn ◽  
Lisa Kidd ◽  
David Eton ◽  
Megan Dillon ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Data Extraction ◽  
Well Being ◽  
Treatment Burden ◽  
Quality Appraisal ◽  
Long Term Conditions ◽  
Patient Reported ◽  
Patient Reported Measures

ObjectivesTreatment burden is the workload of healthcare for people with long-term conditions (LTC) and its impact on well-being. A method of measurement is required to identify those experiencing high burden and to measure intervention efficacy. Our aim was to identify, examine and appraise validated patient-reported measures (PRMs) of treatment burden in stroke. Here, stroke serves as an exemplar LTC of older adults.DesignA systematic review of published studies that describe the development and validation of PRMs measuring treatment burden in stroke survivors.Data sourcesWe searched MEDLINE, Embase, CINAHL and PsycINFO electronic databases.Eligibility criteriaStudies published between January 2000 and 12 April 2019 inclusive, in English language. No restrictions were set based on clinical setting or geographical location.Data extraction and synthesisScreening, data extraction and quality appraisal were conducted by two independent reviewers. Content of the PRMs was compared with a published taxonomy of treatment burden. Quality appraisal was conducted using International Society for Quality of Life Research standards.ResultsFrom 3993 articles, 6 relevant PRMs were identified: 3 were stroke specific: The Satisfaction with Stroke Care questionnaire; The Stroke Patient-Reported Outcome Measure and The Barriers to Physical Activity after Stroke scale. Three were generic but validated in stroke: The WHO Quality of Life-100; The Patient’s Questionnaire on Participation in Discharge Planning and The Chao Perception of Continuity scale. None comprehensively measured treatment burden. Examples of omitted burdens included developing coping strategies, managing finances and returning to driving. The most notable issue regarding quality appraisal was that three PRMs lacked any underpinning qualitative research relevant to the sample.ConclusionThere is a need to develop a comprehensive PRM of treatment burden for use in stroke, with potential for use in other older populations.

scholarly journals Mini-Implant-Retained Overdentures for the Rehabilitation of Completely Edentulous Maxillae: A Systematic Review and Meta-Analysis

2021 ◽  
Vol 18 (8) ◽  
pp. 4377
Author(s):  
Serena Vi ◽  
Damon Pham ◽  
Yu Yian Marina Du ◽  
Himanshu Arora ◽  
Santosh Kumar Tadakamadla
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Survival Rate ◽  
Data Extraction ◽  
Meta Analysis ◽  
Empirical Studies ◽  
Implant Survival ◽  
Patient Reported ◽  
Full Text Review

Purpose: Mini-dental implants (MDIs) have been used to support and retain overdentures, providing patients with a less invasive placement procedure. Although lucrative, the use of MDIs to retain a maxillary overdenture is still not an established treatment modality. This systematic review aims to answer the question: Do mini-implant-retained maxillary overdentures provide a satisfactory treatment outcome for complete edentulism? Methods: A systematic search for relevant articles was conducted to include articles published until April 2021 in the following electronic databases: CINAHL, Cochrane, EMBASE, PubMed, and Web of Science. All empirical studies evaluating the biological, survival, or patient-reported outcomes after placing mini-implant-retained overdentures in maxilla were considered for inclusion. The risk of bias was assessed by utilizing the Joanna Briggs Institute critical appraisal checklist. Study screening and data extraction were conducted by three reviewers independently. Results: The electronic search retrieved 1276 titles after omitting duplicates. Twenty articles were considered for full-text review, of which six studies were included in this systematic review. The included studies evaluated a total of 173 participants with a mean age of 66.3 years. The overall mini-implant survival rate was 77.1% (95% CI: 64.7–89.5%) with a mean follow-up time of 1.79 years (range: 6 months to 3 years). Implant survival differed significantly when comparing complete and partial palatal coverage overdentures. Those with complete palatal coverage exhibited less bone loss overall compared to partial coverage overdentures. Participants of all studies reported an increase in the quality of life and in satisfaction after rehabilitation treatment with MDIs. Conclusions: The survival rate of mini-implants retaining an overdenture in the maxilla was observed to be lower than the values reported for traditional implants in the literature. Improvements were observed in all aspects in terms of patient satisfaction, quality of life, oromyofunction, and articulation after the treatment.

scholarly journals Patient-Reported Outcome Measures (PROMs) in Pediatric Non-Malignant Hematology: A Systematic Review

Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 2180-2180
Author(s):  
Robert J Klaassen ◽  
Julia Y. Kinahan ◽  
Johann M. I. Graham ◽  
Yamilée V. Hébert ◽  
Katie O'Hearn
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Outcome Measures ◽  
Well Being ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Clinical Environment ◽  
Patient Reported ◽  
Disease Specific

Introduction: Patient reported outcome measures (PROMs) are questionnaires completed by patients or caregivers without interpretation by healthcare professionals. As such, they allow patient concerns about a variety of healthcare issues to be identified and addressed in an efficient and actionable manner. PROMs can be generic, with questions relevant to multiple disease groups or disease-specific, with questions targeting the symptoms, limitations, and feelings common to the disease group. This systematic review identified generic and disease-specific PROMs for monitoring symptoms and health-related quality of life (HRQoL) in 4 pediatric non-malignant hematologic disease groups: thalassemia, hemophilia, immune thrombocytopenia (ITP), and sickle cell disease (SCD). Methods: Databases (MEDLINE, Embase, HaPI, CINAHL, and PsycTESTS) were searched to identify publications that either validated or used PROMs as an outcome measure in the four disease groups. Articles were excluded when <30% of the population was pediatric (<18 years), when the study setting was inpatient, when the tool had not been validated, or when the article did not report the use of a PROM for monitoring symptoms or HRQoL. Notably, hemophilia records published prior to 2016 were not screened as a systematic review by Limperg et al. (2017) identified validated PROMs in the pediatric hemophilia population and was used to include relevant articles. Results: The search identified 1176 unique records, with 902 records remaining for title and abstract screening after removal of 274 hemophilia articles published prior to the systematic review. Including hemophilia records identified from the 2017 review, 217 articles met inclusion criteria incorporating 107 generic and 20 disease-specific PROMs. Of the generic tools, the most frequent categories identified include psychological well-being (26 tools), general quality of life (19 tools), and family impact (19 tools). The most frequently used tool was the PedsQL 4.0 Generic Core Scales (66 studies), appearing 33 times in SCD, 25 times in thalassemia, 5 times in ITP, and 3 times in hemophilia. Other commonly used generic tools include the Short Form Health Survey, Child Health Questionnaire, PROMIS Health Measures, and Child Behaviour Checklist (Table). Disease-specific tools identified in the review include the PedsQL SCD Module, Kids ITP Tool, Haemo-QoL, CHO-KLAT, and TranQol (Table). In addition, 10 studies reported on pain diaries and 9 of these studies were SCD focused, the other being hemophilia focused. Conclusion: This systematic review identified several generic and disease-specific PROMs that have been used in pediatric non-malignant hematology. Although generic tools have been used more frequently, many disease-specific tools have been validated and are available for use in the clinical environment. We are currently conducting focus groups with patients, parents, and clinicians to determine the optimal choice of tools for monitoring symptoms and HRQoL in the pediatric non-malignant clinical environment. Disclosures No relevant conflicts of interest to declare.

Interactive remote patient monitoring devices for managing chronic health conditions: systematic review and meta-analysis (Preprint)

2021 ◽  
Author(s):  
Donato Giuseppe Leo ◽  
Benjamin J.R. Buckley ◽  
Mahin Chowdhury ◽  
Stephanie L. Harrison ◽  
Masoud Isanejad ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Usual Care ◽  
Current Evidence ◽  
Long Term Conditions ◽  
Increased Risk ◽  
Patient Reported ◽  
Meta Analyses

BACKGROUND Telemedicine is an expanding and feasible approach to improve medical care for patients with long-term conditions. However, there is a poor understanding of patients’ acceptability of this intervention and their rate of uptake. OBJECTIVE To systematically review the current evidence on telehealth in the management of patients with long-term conditions, and to evaluate the patients’ uptake and acceptability of this technology. METHODS MEDLINE, SCOPUS, and CENTRAL were searched from date of inception to 5 February 2021, with no language restrictions. Studies were eligible for inclusion if they reported any of the following outcomes: (i) intervention uptake and adherence; (ii) study retention; (iii) patient acceptability, satisfaction and experience using intervention: (iv) changes in physiological values; (v) all-cause and cardiovascular related hospitalization; (vi) all-cause and disease specific mortality; (vii) patient-reported outcome measures; (viii) quality of life. Two reviewers independently assessed articles for eligibility. This systematic review was registered on PROSPERO (CRD42021236291). RESULTS Ninety-six studies were included and fifty-eight were pooled for meta-analyses. Meta-analyses showed reduction in mortality (RR= 0.71, 95% CI 0.56 to 0.89, P=0.003, I2=0%); and improvements in BP (MD -3.85 mmHg, 95% CI -7.03 to -0.68, P<.02, I2= 100%) and HbA1c (MD -0.33, 95% CI -0.57 to -0.09, P=.008, I2= 99%); but no significant improvements in quality of life (MD 1.45, 95% CI -0.10 to 3, P=.07, I2=80%); and increased risk of hospitalization (RR 1.02, 95% CI 0.85 to 1.23, P=.81, I2=79%) with telehealth compared to usual care. CONCLUSIONS Telehealth is a valid alternative to usual care, reducing mortality and improving self-management of the disease, with patients reporting good satisfaction and adherence. Further studies are required to address some potential concerns regarding higher hospitalisation rates and a lack of a positive impact on patients’ quality of life.

scholarly journals Quality of life and well-being from the perspective of patients on opioid agonist maintenance treatment: study protocol for a systematic review of qualitative research and a scoping review of measures

2019 ◽  
Vol 8 (1) ◽  
Author(s):  
Ivan Solà ◽  
Joan Trujols ◽  
Elisa Ribalta ◽  
Saul Alcaraz ◽  
Gemma Robleda ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Qualitative Research ◽  
Scoping Review ◽  
Maintenance Treatment ◽  
Well Being ◽  
Patient Centeredness ◽  
Opioid Agonist ◽  
Patient Reported

Abstract Background Opioid agonist maintenance treatment (OAMT) is a first-line treatment for heroin dependence, but its effectiveness has been assessed primarily through clinical outcomes with a limited attention to patient perspectives. Despite the increased use of patient reported outcome measures their patient-centeredness is highly questionable. This is the protocol of a systematic review of qualitative research on how OAMT users construct the meaning of their quality of life and well-being and a scoping review of instruments that measure these domains. Methods We will conduct a systematic review of qualitative research exploring the views of quality of life of patients on OAMT (registration number CRD42018086490). According pre-specified eligibility criteria, we will include studies from a comprehensive search of bibliographical databases from their inception. We will extract data from included studies and assess their risk of bias with the CASP appraisal criteria, and will implement a thematic analysis to generate a set of interpretative analytical themes ascertaining their confidence using the CERQual approach. We will implement similar methods to conduct a scoping review to assess to what extent the existing measures of these domains were focused on user’s views, assessing their validity using the COSMIN methodology, and summarizing their characteristics and level of patient centeredness. Conclusion The findings from the reviews will contribute to obtain a genuine understanding of the perspective from users on OAMT regarding their perception of well-being and quality of life and will likely lead to greater patient centeredness when assessing such variables, which in turn may contribute to a more patient-centered care.

scholarly journals Systematic review of the impact of arts for health activities on health, wellbeing and quality of life of older people living in care homes

Dementia ◽  
2018 ◽  
Vol 17 (6) ◽  
pp. 645-669 ◽  
Author(s):  
Amy Curtis ◽  
Lucy Gibson ◽  
Mary O’Brien ◽  
Brenda Roe
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Older People ◽  
Data Extraction ◽  
Care Home ◽  
Quality Appraisal ◽  
Social Stressors ◽  
Cognitive Difficulties ◽  
The Impact

Care home populations frequently feature older people who often experience poor physical health and cognitive difficulties, along with vulnerability to psychological and social stressors. To date there has been no systematic review which focuses on the impact of arts for health activities to the care home population. Evidence was sourced from several databases and 71 studies were deemed eligible for inclusion in this review. These studies underwent data extraction and quality appraisal and the findings associated with health, wellbeing and quality of life are presented within this paper.

The effectiveness of hope-fostering interventions in palliative care: A systematic review and meta-analysis

2021 ◽  
pp. 026921632199472
Author(s):  
Natalia Salamanca-Balen ◽  
Thomas V Merluzzi ◽  
Man Chen
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Palliative Care ◽  
Meta Analysis ◽  
Symptom Burden ◽  
Well Being ◽  
Medium Effect ◽  
Spiritual Well Being ◽  
Quasi Experimental

Background: The concept of hope is an important theme in chronic illness and palliative care and has been associated with increased psycho-spiritual well-being and quality of life. Psycho-spiritual interventions have been described in this population, but no systematic review of hope-enhancing interventions or hopelessness-reducing interventions has been conducted for persons with palliative care diseases. Aim: To describe and assess the effectiveness of interventions in palliative care that measure hope and/or hopelessness as an outcome. Design: This systematic review and meta-analysis was pre-registered (Prospero ID: CRD42019119956). Data sources: Electronic databases, journals, and references were searched. We used the Cochrane criteria to assess the risk of bias within studies. Results: Thirty-five studies (24 randomized controlled trials, 5 quasi-experimental, 6 pre-post studies) involving a total of 3296 palliative care patients were included. Compared with usual/standard cancer care alone, interventions significantly increased hope levels at a medium effect size ( g = 0.61, 95% confidence interval (CI) = 0.28–0.93) but did not significantly reduce hopelessness ( g = −0.08, 95% CI = −0.18 to 0.02). It was found that interventions significantly increase spirituality ( g = 0.70, 95% CI = 0.02–1.37) and decrease depression ( g = −0.29, 95% CI = −0.51 to −0.07), but had no significant effect over anxiety, quality of life, and symptom burden. Overall, quality of evidence across the included studies was rated as low. Conclusions: Evidence suggests that interventions can be effective in increasing hope in palliative care patients.

scholarly journals An assessment of the use of patient reported outcome measurements (PROMs) in cancers of the pelvic abdominal cavity: identifying oncologic benefit and an evidence-practice gap in routine clinical practice

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Miss Charlotte L. Moss ◽  
Ajay Aggarwal ◽  
Asad Qureshi ◽  
Benjamin Taylor ◽  
Teresa Guerrero-Urbano ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Abdominal Cavity ◽  
Patient Reported Outcome ◽  
Oncologic Outcomes ◽  
Review Of The Literature ◽  
Outcome Measurements ◽  
Patient Reported ◽  
Cancer Setting

Abstract Background Patient reported outcome measurements (PROMs) are emerging as an important component of patient management in the cancer setting, providing broad perspectives on patients’ quality of life and experience. The use of PROMs is, however, generally limited to the context of randomised control trials, as healthcare services are challenged to sustain high quality of care whilst facing increasing demand and financial shortfalls. We performed a systematic review of the literature to identify any oncological benefit of using PROMs and investigate the wider impact on patient experience, in cancers of the pelvic abdominal cavity specifically. Methods A systematic review of the literature was conducted using MEDLINE (Pubmed) and Ovid Gateway (Embase and Ovid) until April 2020. Studies investigating the oncological outcomes of PROMs were deemed suitable for inclusion. Results A total of 21 studies were included from 2167 screened articles. Various domains of quality of life (QoL) were identified as potential prognosticators for oncologic outcomes in cancers of the pelvic abdominal cavity, independent of other clinicopathological features of disease: 3 studies identified global QoL as a prognostic factor, 6 studies identified physical and role functioning, and 2 studies highlighted fatigue. In addition to improved outcomes, a number of included studies also reported that the use of PROMs enhanced both patient-clinician communication and patient satisfaction with care in the clinical setting. Conclusions This review highlights the necessity of routine collection of PROMs within the pelvic abdominal cancer setting to improve patient quality of life and outcomes.

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.

Significance of patient-reported outcomes for occupational resumption and quality of life after cardiac rehabilitation

2020 ◽  
Vol 41 (Supplement_2) ◽  
Author(s):  
A Salzwedel ◽  
I Koran ◽  
E Langheim ◽  
A Schlitt ◽  
J Nothroff ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Performance ◽  
Well Being ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Funding Source ◽  
Patient Reported ◽  
Returning To Work

Abstract Introduction Comprehensive cardiac rehabilitation (CR) programs based on the bio-psycho-social approach of the international classification of functioning and disease are carried out to achieve improved prognosis, superior health-related quality of life (HRQL) and social integration. We aimed to identify predictors of returning to work (RTW) and HRQL among cardiovascular risk factors and physical performance as well as patient-reported outcome measures (PROMs) modifiable during CR. Methods We designed a prospective observational multi-center study and enrolled 1,586 patients (2017/18) in 12 German rehabilitation centers regardless of their primary allocation diagnoses (e.g. acute myocardial infarction (AMI), coronary artery bypass grafting (CABG), coronary artery disease (CAD), valvular disease). Besides general data (e.g. age, gender, diagnoses), parameters of risk factor management (e.g. smoking, lipid profile, hypertension, lifestyle change motivation), physical performance (e.g. maximum exercise capacity, endurance training load, 6-min walking distance), and PROMs (e.g. depression, heart-focused anxiety, HRQL, subjective well-being, somatic and mental health, pain, general self-efficacy, pension desire as well as self-assessment of occupational prognosis using several questionnaires) were documented at CR admission and discharge. 6 months after discharge, status of RTW and HRQL (SF-12) were captured by a follow-up (FU) survey and analyzed in multivariable regression models with multiple imputation of missing values. Results Out of the study participants, 1,262 patients (54±7 years, 77% men) responded to the follow-up survey and could be analyzed regarding the outcome parameters. Most of them were assigned to CR primarily due to AMI (40%) or CAD without myocardial infarction (18%), followed by heart valve diseases in 12% of patients and CABG (8%). 864 patients (69%) returned to work within the follow-up period. Pension desire, negative self-assessed occupational prognosis, heart-focussed anxiety, major life events, smoking and heart failure were negatively associated with RTW, while higher endurance training load, HRQL and work stress were positively associated (Figure 1). HRQL after 6 months was determined more by PROMs (e.g. pension desire, heart-focused anxiety, physical/mental HRQL in SF-12, physical/mental health in indicators of rehab-status questionnaire (IRES-24), stress, well-being in the World Health Organization well-being index and self-efficacy expectations) than by clinical parameters or physical performance. Conclusions Patient-reported outcome measures predominantly influenced RTW and HRQL in heart-disease patients, whereas patients' pension desire and heart-focussed anxiety had a dominant impact on all investigated endpoints. Therefore, the multi-component CR approach focussing on psychosocial support is crucial for subjective health prognosis and occupational resumption. Figure 1. Predictors of returning to work Funding Acknowledgement Type of funding source: Public grant(s) – National budget only. Main funding source(s): German pension insurance

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