scholarly journals Assessment of the wish to hasten death in patients with advanced disease: A systematic review of measurement instruments

2016 ◽  
Vol 31 (6) ◽  
pp. 510-525 ◽  
Author(s):  
Mercedes Bellido-Pérez ◽  
Cristina Monforte-Royo ◽  
Joaquín Tomás-Sábado ◽  
Josep Porta-Sales ◽  
Albert Balaguer
BMJ Open ◽  
2017 ◽  
Vol 7 (9) ◽  
pp. e016659 ◽  
Author(s):  
Andrea Rodríguez-Prat ◽  
Albert Balaguer ◽  
Andrew Booth ◽  
Cristina Monforte-Royo

ObjectivesPatients with advanced disease sometimes express a wish to hasten death (WTHD). In 2012, we published a systematic review and meta-ethnography of qualitative studies examining the experience and meaning of this phenomenon. Since then, new studies eligible for inclusion have been reported, including in Europe, a region not previously featured, and specifically in countries with different legal frameworks for euthanasia and assisted suicide. The aim of the present study was to update our previous review by including new research and to conduct a new analysis of available data on this topic.SettingEligible studies originated from Australia, Canada, China, Germany, The Netherlands, Switzerland, Thailand and USA.ParticipantsStudies of patients with life-threatening conditions that had expressed the WTHD.DesignThe search strategy combined subject terms with free-text searching of PubMed MEDLINE, Web of Science, CINAHL and PsycInfo. The qualitative synthesis followed the methodology described by Noblit and Hare, using the ‘adding to and revising the original’ model for updating a meta-ethnography, proposed by Franceet al. Quality assessment was done using the Critical Appraisal Skills Programme checklist.Results14 studies involving 255 participants with life-threatening illnesses were identified. Five themes emerged from the analysis: suffering (overarching theme), reasons for and meanings and functions of the WTHD and the experience of a timeline towards dying and death. In the context of advanced disease, the WTHD emerges as a reaction to physical, psychological, social and existential suffering, all of which impacts on the patient’s sense of self, of dignity and meaning in life.ConclusionsThe WTHD can hold different meanings for each individual—serving functions other than to communicate a genuine wish to die. Understanding the reasons for, and meanings and functions of, the WTHD is crucial for drawing up and implementing care plans to meet the needs of individual patients.


BMJ Open ◽  
2019 ◽  
Vol 9 (4) ◽  
pp. e027524 ◽  
Author(s):  
Daniel Gutiérrez Sánchez ◽  
Rafael Gómez García ◽  
Isabel María López-Medina ◽  
Antonio I Cuesta-Vargas

IntroductionThe prevention and relief of suffering are regarded as a goal at the end of life; therefore, suffering assessment at the end of life is essential. In this regard, we need instruments that allow us to evaluate this construct for gathering more evidence, as the assessment of suffering is increasingly used in research and the clinical setting. Many measures have been designed to assess this construct, and the selection of the most appropriate instrument is crucial. The aims of this systematic review are to (1) identify the measures assessing suffering in patients with advanced disease and their psychometric properties and (2) evaluate the methodological quality of studies on measurement properties.Methods and analysisThe protocol of this systematic review was developed using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocols Guidelines. A systematic psychometric review of measures assessing suffering in patients with advanced disease and their psychometric properties will be carried out according to the COnsensus-based Standards for the selection of health status Measurement INstruments (COSMIN). The search strategy will be performed following the Peer Review of Electronic Search Strategies. Searches will be conducted in Cumulative Index to Nursing and Allied Health Literature, Medline, PsycINFO, Cochrane Library, SciELO, Open Grey, Scopus, Web of Science and COSMIN database of systematic reviews, and it will be limited by time (1980–2018) and language (only literature in English and Spanish). Literature will be evaluated by two independent reviewers according to the COSMIN checklist, and measurement properties data of each study that meet the inclusion criteria will be scored independently by two researchers according to COSMIN quality ratings.Ethics and disseminationEthical approval is not necessary for systematic review protocols. The results will be disseminated by publication in a peer-reviewed journal and presented at a relevant conference.PROSPERO registration numberCRD42018106488.


Author(s):  
Clare Burgon ◽  
Sarah Elizabeth Goldberg ◽  
Veronika van der Wardt ◽  
Catherine Brewin ◽  
Rowan H. Harwood

<b><i>Background:</i></b> Apathy is highly prevalent in dementia and is also seen in mild cognitive impairment and the general population. Apathy contributes to failure to undertake daily activities and can lead to health problems or crises. It is therefore important to assess apathy. However, there is currently no gold standard measure of apathy. A comprehensive systematic review of the measurement properties of apathy scales is required. <b><i>Methods:</i></b> A systematic review was registered with PROSPERO (ID: CRD42018094390). MEDLINE, Embase, PsycINFO, and CINAHL were searched for studies that aimed to develop or assess the validity or reliability of an apathy scale in participants over 65 years, living in the community. A systematic review was conducted in line with the COnsensus-based Standards for the selection of health Measurement INstruments procedure for reviewing patient-reported outcome measures. The studies’ risk of bias was assessed, and all relevant measurement properties were assessed for quality. Results were pooled and rated using a modified Grading of Recommendations Assessment, Development, and Evaluation procedure. <b><i>Results:</i></b> Fifty-seven publications regarding 18 measures and 39 variations met the eligibility criteria. The methodological quality of individual studies ranged from inadequate to very good and measurement properties ranged from insufficient to sufficient. Similarly, the overall evidence for measurement properties ranged from very low to high quality. The Apathy Evaluation Scale (AES) and Lille Apathy Rating Scale (LARS) had sufficient content validity, reliability, construct validity, and where applicable, structural validity and internal consistency. <b><i>Conclusion:</i></b> Numerous scales are available to assess apathy, with varying psychometric properties. The AES and LARS are recommended for measuring apathy in older adults and people living with dementia. The apathy dimension of the commonly used Neuropsychiatric Inventory should be limited to screening for apathy.


2021 ◽  
Vol 34 (2) ◽  
pp. e100247
Author(s):  
Matt Pelton ◽  
Matt Ciarletta ◽  
Holly Wisnousky ◽  
Nicholas Lazzara ◽  
Monica Manglani ◽  
...  

BackgroundPeople living with HIV/AIDS (PLWHA) must contend with a significant burden of disease. However, current studies of this demographic have yielded wide variations in the incidence of suicidality (defined as suicidal ideation, suicide attempt and suicide deaths).AimsThis systematic review and meta-analysis aimed to assess the lifetime incidence and prevalence of suicidality in PLWHA.MethodsPublications were identified from PubMed (MEDLINE), SCOPUS, OVID (MEDLINE), Joanna Briggs Institute EBP and Cochrane Library databases (from inception to before 1 February 2020). The search strategy included a combination of Medical Subject Headings associated with suicide and HIV. Researchers independently screened records, extracted outcome measures and assessed study quality. Data were pooled using a random-effects model. Subgroup and meta-regression analyses were conducted to explore the associated risk factors and to identify the sources of heterogeneity. Main outcomes were lifetime incidence of suicide completion and lifetime incidence and prevalence of suicidal ideation and suicide attempt.ResultsA total of 185 199 PLWHA were identified from 40 studies (12 cohorts, 27 cross-sectional and 1 nested case-control). The overall incidence of suicide completion in PLWHA was 10.2/1000 persons (95%CI: 4.5 to 23.1), translating to 100-fold higher suicide deaths than the global general population rate of 0.11/1000 persons. The lifetime prevalence of suicide attempts was 158.3/1000 persons (95%CI: 106.9 to 228.2) and of suicidal ideation was 228.3/1000 persons (95%CI: 150.8 to 330.1). Meta-regression revealed that for every 10-percentage point increase in the proportion of people living with HIV with advanced disease (AIDS), the risk of suicide completion increased by 34 per 1000 persons. The quality of evidence by Grading of Recommendations, Assessment, Development and Evaluations for the suicide deaths was graded as ‘moderate’ quality.ConclusionsThe risk of suicide death is 100-fold higher in people living with HIV than in the general population. Lifetime incidence of suicidal ideation and attempts are substantially high. Suicide risk assessments should be a priority in PLWHA, especially for those with more advanced disease.


PLoS ONE ◽  
2021 ◽  
Vol 16 (11) ◽  
pp. e0259499
Author(s):  
Priscilla N. Owusu ◽  
Ulrich Reininghaus ◽  
Georgia Koppe ◽  
Irene Dankwa-Mullan ◽  
Till Bärnighausen

Background The popularization of social media has led to the coalescing of user groups around mental health conditions; in particular, depression. Social media offers a rich environment for contextualizing and predicting users’ self-reported burden of depression. Modern artificial intelligence (AI) methods are commonly employed in analyzing user-generated sentiment on social media. In the forthcoming systematic review, we will examine the content validity of these computer-based health surveillance models with respect to standard diagnostic frameworks. Drawing from a clinical perspective, we will attempt to establish a normative judgment about the strengths of these modern AI applications in the detection of depression. Methods We will perform a systematic review of English and German language publications from 2010 to 2020 in PubMed, APA PsychInfo, Science Direct, EMBASE Psych, Google Scholar, and Web of Science. The inclusion criteria span cohort, case-control, cross-sectional studies, randomized controlled studies, in addition to reports on conference proceedings. The systematic review will exclude some gray source materials, specifically editorials, newspaper articles, and blog posts. Our primary outcome is self-reported depression, as expressed on social media. Secondary outcomes will be the types of AI methods used for social media depression screen, and the clinical validation procedures accompanying these methods. In a second step, we will utilize the evidence-strengthening Population, Intervention, Comparison, Outcomes, Study type (PICOS) tool to refine our inclusion and exclusion criteria. Following the independent assessment of the evidence sources by two authors for the risk of bias, the data extraction process will culminate in a thematic synthesis of reviewed studies. Discussion We present the protocol for a systematic review which will consider all existing literature from peer reviewed publication sources relevant to the primary and secondary outcomes. The completed review will discuss depression as a self-reported health outcome in social media material. We will examine the computational methods, including AI and machine learning techniques which are commonly used for online depression surveillance. Furthermore, we will focus on standard clinical assessments, as indicating content validity, in the design of the algorithms. The methodological quality of the clinical construct of the algorithms will be evaluated with the COnsensus-based Standards for the selection of health status Measurement Instruments (COSMIN) framework. We conclude the study with a normative judgment about the current application of AI to screen for depression on social media. Systematic review registration International Prospective Register of Systematic Reviews PROSPERO (registration number CRD42020187874).


BMJ Open ◽  
2019 ◽  
Vol 9 (3) ◽  
pp. e023204 ◽  
Author(s):  
Nicola Middlebrook ◽  
Alison B Rushton ◽  
Nicola R Heneghan ◽  
Deborah Falla

IntroductionPain following musculoskeletal trauma is common with poor outcomes and disability well documented. Pain is complex in nature and can include the four primary mechanisms of pain: nociceptive, neuropathic, inflammatory and central sensitisation (CS). CS can be measured in multiple ways; however, no systematic review has evaluated the measurement properties of such measures in the musculoskeletal trauma population. This systematic review aims to evaluate the measurement properties of current measures of CS in this population.Methods/analysisThis protocol is informed and reported in line with the Preferred Reporting Items for Systematic Reviews and Meta-Analysis-P. MEDLINE, EMBASE, CINAHL, ZETOC, Web of Science, PubMed and Google Scholar as well as key journals and grey literature will be searched in two stages to (1) identify what measures are being used to assess CS in this population and (2) evaluate the measurement properties of the identified measures. Two independent reviewers will conduct the search, extract the data, assess risk of bias for included studies and assess overall quality. The Consensus-based Standards for the selection of Health Measurement Instruments Risk of Bias Checklist and a modified Grading of Recommendations, Assessment, Development and Evaluation guidelines will be used. Meta-analysis will be conducted if deemed appropriate. Alternatively, a narrative synthesis will be conducted and summarised per measurement property per outcome measure.Ethics and disseminationThis review will aid clinicians in using the most appropriate tool for assessing central sensitisation in this population and is the first step towards a more standardised approach in pain assessment. The results of this study will be submitted to a peer reviewed journal and presented at conferences.PROSPERO registrationnumberCRD42018091531.


2020 ◽  
pp. 152483802091559
Author(s):  
Sangwon Yoon ◽  
Renée Speyer ◽  
Reinie Cordier ◽  
Pirjo Aunio ◽  
Airi Hakkarainen

Aims: Child maltreatment (CM) is global public health issue with devastating lifelong consequences. Global organizations have endeavored to eliminate CM; however, there is lack of consensus on what instruments are most suitable for the investigation and prevention of CM. This systematic review aimed to appraise the psychometric properties (other than content validity) of all current parent- or caregiver-reported CM instruments and recommend the most suitable for use. Method: A systematic search of the CINAHL, Embase, ERIC, PsycINFO, PubMed, and Sociological Abstracts databases was performed. The evaluation of psychometric properties was conducted according to the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) guidelines for systematic reviews of patient-report outcome measures. Responsiveness was beyond the scope of this systematic review, and content validity has been reported on in a companion paper (Part 1). Only instruments developed and published in English were included. Results: Twenty-five studies reported on selected psychometric properties of 15 identified instruments. The methodological quality of the studies was overall adequate. The psychometric properties of the instruments were generally indeterminate or not reported due to incomplete or missing psychometric data; high-quality evidence on the psychometric properties was limited. Conclusions: No instruments could be recommended as most suitable for use in clinic and research. Nine instruments were identified as promising based on current psychometric data but would need further psychometric evidence for them to be recommended.


Sign in / Sign up

Export Citation Format

Share Document