scholarly journals Quality of patient information leaflets for Down syndrome screening: A comparison between the UK and Thailand

2015 ◽  
Vol 17 (3) ◽  
pp. 313-322 ◽  
Author(s):  
Parvinee Saiklang ◽  
Heather Skirton
BMJ Open ◽  
2020 ◽  
Vol 10 (9) ◽  
pp. e037994
Author(s):  
Lydia O'Sullivan ◽  
Prasanth Sukumar ◽  
Rachel Crowley ◽  
Eilish McAuliffe ◽  
Peter Doran

ObjectivesThe first aim of this study was to quantify the difficulty level of clinical research Patient Information Leaflets/Informed Consent Forms (PILs/ICFs) using validated and widely used readability criteria which provide a broad assessment of written communication. The second aim was to compare these findings with best practice guidelines.DesignRetrospective, quantitative analysis of clinical research PILs/ICFs provided by academic institutions, pharmaceutical companies and investigators.SettingPILs/ICFs which had received Research Ethics Committee approval in the last 5 years were collected from Ireland and the UK.InterventionNot applicable.Main outcome measuresPILs/ICFs were evaluated against seven validated readability criteria (Flesch Reading Ease, Flesh Kincaid Grade Level, Simplified Measure of Gobbledegook, Gunning Fog, Fry, Raygor and New Dale Chall). The documents were also scored according to two health literacy-based criteria: the Clear Communication Index (CCI) and the Suitability Assessment of Materials tool. Finally, the documents were assessed for compliance with six best practice metrics from literacy agencies.ResultsA total of 176 PILs were collected, of which 154 were evaluable. None of the PILs/ICFs had the mean reading age of <12 years recommended by the American Medical Association. 7.1% of PILs/ICFs were evaluated as ‘Plain English’, 40.3%: ‘Fairly Difficult’, 51.3%: ‘Difficult’ and 1.3%: ‘Very Difficult’. No PILs/ICFs achieved a CCI >90. Only two documents complied with all six best practice literacy metrics.ConclusionsWhen assessed against both traditional readability criteria and health literacy-based tools, the PILs/ICFs in this study are inappropriately complex. There is also evidence of poor compliance with guidelines produced by literacy agencies. These data clearly evidence the need for improved documentation to underpin the consent process.


BMJ Open ◽  
2019 ◽  
Vol 9 (1) ◽  
pp. e026710 ◽  
Author(s):  
Corine Rollema ◽  
Eric M van Roon ◽  
Anne GM Schilder ◽  
Tjalling W de Vries

ObjectivesIn this study, we analysed patient information leaflets (PILs) of intranasal corticosteroid sprays (INCS) of different manufacturers in the UK to determine if instructions for the use of INCS are complete and uniform.SettingPILs of all INCS of all manufacturers, available for patients in the UK, were collected from the British National Formulary website and the Medicines and Healthcare products Regulatory Agency website. All instructions in these PILs were analysed.ParticipantsWe identified PILs of INCS from 21 different manufacturers, available for patients in the UK.ResultsWe analysed the instructions for the use of INCS in 21 different PILs and there is large variation in the PIL instructions for the technique of using INCS across PILs.ConclusionComplete and uniform instructions for the use of INCS are lacking in PILs for registered preparations in the UK. Structured and standardised instructions to be used by both professionals and patients are essential in order to optimise daily use of INCS.


BDJ ◽  
2015 ◽  
Vol 218 (4) ◽  
pp. E7-E7 ◽  
Author(s):  
J. Barber ◽  
J. Puryer ◽  
L. McNally ◽  
D. O'Sullivan

Author(s):  
Hayfa Abdulaziz Almuhaisen ◽  
Aljoharah Farraj F Alzuabi ◽  
Halah Abdurabuh A Alshammari ◽  
Rola Khalid S Alghamdi ◽  
Mohammed Fahed Tayfour ◽  
...  

Information on pharmaceuticals is beneficial for patients, most patients like to read patient information leaflets for their pharmaceuticals. Nevertheless, the quality of the information written on pharmaceuticals gives space for improvement. To improve the inadequacies of patient information leaflets, an alternate approach for the provision of information on pharmaceuticals will be illustrated. This work aims to design and develop a web application that will provide pharmaceutical product leaflets information as well as the proposed web application will provide supplementary services. The proposed work was designed and developed using the Unified Modeling Language (UML), SQL, XML, and ASP.Net programming languages.


2020 ◽  
Vol 30 (1) ◽  
pp. 175-187
Author(s):  
LOUISE AUSTIN ◽  
JEANNETTE LITTLEMORE ◽  
SHEELAGH MCGUINNESS ◽  
SARAH TURNER ◽  
DANIELLE FULLER ◽  
...  

AbstractEach year in the UK there are approximately 250,000 miscarriages, 3,000 stillbirths and 3,000 terminations following a diagnosis of fetal-abnormality. This paper draws from original empirical research into the experience of pregnancy loss and the accompanying decisionmaking processes. A key finding is that there is considerable variation across England in the range of options that are offered for disposal of pregnancy remains and the ways in which information around disposal are communicated. This analysis seeks to outline the key features of what constitutes effective communication in this context, where effective communication is taken to mean that patients are provided with the key information necessary, in an appropriate manner, so that they are fully able to make a decision. A primary source of evidence includes interviews with the bereaved and pregnancy-loss support workers, in order to understand how the options available, and associated necessary procedures, are communicated. In addition, patient information leaflets are also analyzed as they offer an important tool for information delivery at a difficult and emotionally charged time. Following this, an overview is provided of the information that these leaflets should contain, along with guidance on effective presentation of this information.


2019 ◽  
Vol 7 (6) ◽  
pp. 1403-1409
Author(s):  
Matthew Low ◽  
Louise C Burgess ◽  
Thomas W Wainwright

Background: High-quality patient information is recommended to help reduce procedure-related anxiety and encourage patients to become active participants in their recovery. The objective of this study was to analyze the quality of patient information leaflets (PILs) given to National Health Service (NHS) patients ahead of lumbar spine surgery. Methods: The DISCERN tool was used to evaluate the quality of PILs, sourced from NHS websites. Results: Thirty-two PILs on lumbar surgery were included. Two (6%) leaflets were considered poor, 13 (41%) were marked as fair, 14 (44%) were of good quality, and 3 (9%) were scored as excellent. The total mean score was 55 (30-74), which corresponds to good quality. The lowest scoring questions were sources of information (Q4), balanced/unbiased content (Q6), and explanation of no treatment (Q12). Conclusions: There is considerable variation in the quality of PILs provided ahead of lumbar spine surgery. The scope for improvement is clear, and as the move toward patient-centered, evidence-based care continues, it is important that hospital resources provide recommendations based upon evidence of clinical effectiveness.


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