Written information given to patients and families by palliative care units: a national survey

doi:10.1016/S0140-6736(00)02272-8

The Lancet

Volume 355, Issue 9217, 20 May 2000, Page 1792

https://doi.org/10.1016/S0140-6736(00)02272-8 Get rights and content

Summary

A national survey of written information given to patients and their families by palliative care units found that 64% of leaflets could be understood by only an estimated 40% of the British population. Many of the leaflets did not meet basic guidelines on legibility and readability.

References (5)

NJ Jarrett et al.
Terminally ill patients' and lay-carers preceptions and experiences of community based services
J Adv Nurs
(1999)
P Meredith et al.
New directions in information for patients
BMJ
(1995)

There are more references available in the full text version of this article.

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We report on a series of four studies that investigated how user experience design (UXD) can improve printed educational materials (PEMs). We examined the perceived usability of an existing PEM for breast cancer screening and observed the usability problems associated with it (Study 1). We then compared a breast cancer screening PEM created by user experience designers with two other breast cancer screening PEMS, finding that the PEM based on UXD had higher perceived usability, and lower mentions of usability problems, than the other two PEMs (Study 2). We next examined the impact of individual differences in design expertise on perceived usability, this time including a PEM on cervical cancer screening as well as one on breast cancer screening (Study 3). Our concluding study (Study 4) then examined the impacts of UXD on learnability of PEM content as defined by answers to a knowledge questionnaire about screening administered before and after reading the PEM, and by intention to screen for cancer after reading the PEM. The first three studies showed that the involvement of UXD improved the perceived usability of PEMs, and Study 3 showed that designers differ in their ability to create useable PEMs. Study 4 failed to find a corresponding improvement in learnability or intention to screen when UXD was used to improve perceived usability. We conclude that a user experience design approach that incorporates graphic design can improve the perceived usability of PEMs in some situations (e.g., when the PEM material is not too lengthy or complex, and when the graphic designer is sufficiently skilled). However, we found no evidence that lack of perceived usability accounted for the failure of PEMS (found in previous research) to improve knowledge or intention to screen.
Information for oral and maxillofacial patients: can it be improved?
2019, British Journal of Oral and Maxillofacial Surgery
Citation Excerpt :
PILs are popular, with the majority of patients preferring written information and leaflets.7 PILs can be of variable quality due to poor content, structure and writing style.8,9 Ideally, the content used in the PILs should easily be understood by patients, easily read and remembered to enhance the communication between the doctor and the patient.4
The aim and objective of this study was to evaluate the quality and readability of leaflet and online Oral and Maxillofacial Surgery patient information leaflets (PILs). The quality, readability and grade level of each PIL was assessed using the DISCERN, Flesch Reading Ease and Flesh-Kincaid Grade Level instruments respectively. In total, 140 patient information leaflets were assessed. For both leaflet and online PILs, many items of the DISCERN instrument were deemed of low quality and poorly reported. The median overall quality score was 30.2. Variation in the quality and readability scores between leaflet and online PILs and those produced by various societies was evident. Overall, PILs were deemed to be of moderate quality. Online PILs were of lower quality, more difficult to read and aimed at a higher reading age level.
Online palliative care and oncology patient education resources through Google: Do they meet national health literacy recommendations?
2017, Practical Radiation Oncology
Citation Excerpt :
One study sampled patient education materials from 5 national palliative care organizations and using 1 readability scale found that the materials were written at a higher level than the general public could understand.17 A survey study in the United Kingdom and Ireland also found that the majority of palliative care education leaflets were understood by less than half of the British population.18 This study examined online palliative care patient education resources searched through the Google search engine and aimed to assess their readability levels through 10 readability algorithms widely accepted in the medical literature.
The Google search engine is a resource commonly used by patients to access health-related patient education information. The American Medical Association and National Institutes of Health recommend that patient education resources be written at a level between the third and seventh grade reading levels. We assessed the readability levels of online palliative care patient education resources using 10 readability algorithms widely accepted in the medical literature.
In October 2016, searches were conducted for 10 individual terms pertaining to palliative care and oncology using the Google search engine; the first 10 articles written for the public for each term were downloaded for a total of 100 articles. The terms included palliative care, hospice, advance directive, cancer pain management, treatment of metastatic disease, treatment of brain metastasis, treatment of bone metastasis, palliative radiation therapy, palliative chemotherapy, and end-of-life care. We determined the average reading level of the articles by readability scale and Web site domain.
Nine readability assessments with scores equivalent to academic grade level found that the 100 palliative care education articles were collectively written at a 12.1 reading level (standard deviation, 2.1; range, 7.6-17.3). Zero articles were written below a seventh grade level. Forty-nine (49%) articles were written above a high school graduate reading level. The Flesch Reading Ease scale classified the articles as “difficult” to read with a score of 45.6 of 100. The articles were collected from 62 Web site domains. Seven domains were accessed 3 or more times; among these, www.mskcc.org had the highest average reading level at a 14.5 grade level (standard deviation, 1.4; range, 13.4-16.1).
Most palliative care education articles readily available on Google are written above national health literacy recommendations. There is need to revise these resources to allow patients and their families to derive the most benefit from these materials.
Readability, suitability and comprehensibility in patient education materials for Swedish patients with colorectal cancer undergoing elective surgery: A mixed method design
2014, Patient Education and Counseling
Citation Excerpt :
The way information is presented is vital to all patients, regardless of background and level of education. Although healthcare makes complex demands on patients, including self-management of their health and reading difficult texts [1], PEM are often produced internally by hospital staff [21] without sufficient consideration being given to their suitability for the intended reader [22]. Avoiding unknown vocabulary and difficult grammatical structures makes the information easier to read and comprehend [1,22–27].
To characterize education materials provided to patients undergoing colorectal cancer surgery to gain a better understanding of how to design readable, suitable, comprehensible materials.
Mixed method design. Deductive quantitative analysis using a validated suitability and comprehensibility assessment instrument (SAM + CAM) was applied to patient education materials from 27 Swedish hospitals, supplemented by language technology analysis and deductive and inductive analysis of data from focus groups involving 15 former patients.
Of 125 patient education materials used during the colorectal cancer surgery process, 13.6% were rated ‘not suitable’, 76.8% ‘adequate’ and 9.6% ‘superior’. Professionally developed stoma care brochures were rated ‘superior’ and 44% of discharge brochures were ‘not suitable’. Language technology analysis showed that up to 29% of materials were difficult to comprehend. Focus group analysis revealed additional areas that needed to be included in patient education materials: general and personal care, personal implications, internet, significant others, accessibility to healthcare, usability, trustworthiness and patient support groups.
Most of the patient education materials were rated ‘adequate’ but did not meet the information needs of patients entirely. Discharge brochures particularly require improvement.
Using patients’ knowledge and integrating manual and automated methods could result in more appropriate patient education materials.
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Research LettersWritten information given to patients and families by palliative care units: a national survey

Summary

Terminally ill patients' and lay-carers preceptions and experiences of community based services

J Adv Nurs

New directions in information for patients

BMJ

Research Letters
Written information given to patients and families by palliative care units: a national survey