Quality of internet information to aid patient decision making in locally advanced and recurrent rectal cancer

Williams, A.; Cunningham, Andrew; Hutchings, Hayley; Harris, Dean; Evans, Martyn; Harji, Deena

doi:10.1016/j.surge.2021.12.008

Cited by 6 publications

(8 citation statements)

References 40 publications

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“…Systematic reviews of PubMed, Cochrane databases and DALI to identify literature relating to decision aids for PE. 18 …”

Section: Methodsmentioning

confidence: 99%

“…A review of the grey literature registered on PROSPERO to identify key perspectives and priorities important to patients when making decisions. 18 …”

Section: Methodsmentioning

confidence: 99%

“…There is also little available online health information relating to PE for LARC or LRRC. The currently available online information is of poor quality 18. At present, there is no available decision aid to provide patients with informative, accurate material to aid decision-making in PE for rectal cancer.…”

Section: Introductionmentioning

confidence: 99%

“…The currently available online information is of poor quality. 18 At present, there is no available decision aid to provide patients with informative, accurate material to aid decision-making in PE for rectal cancer. This is a key priority not only to address in order to meet the Royal College of Surgeons (RCS) and the National Institute of Clinical Excellence (NICE) guidelines but also to avoid medicolegal redress following the Montgomery 2015 ruling.…”

Section: Introductionmentioning

confidence: 99%

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Designing and evaluating a patient decision aid for patients with locally advanced or locally recurrent rectal cancer: a national multicentre mixed methods study protocol

et al. 2022

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IntroductionApproximately 5%–10% of new rectal cancers are locally advanced (locally advanced rectal cancer (LARC)) at presentation with 4%–8% recurring (locally recurrent rectal cancer (LRRC)) after initial treatment. Patients with potentially curable disease have to consider many trade-offs when considering major exenterative surgery. There are no decision tools for these patients and current resources have found to not meet minimum international standards. The overall aim of this study is to produce a validated patient decision aid (PtDA) to assist patients considering radical pelvic exenteration for LARC and LRRC created in line with international minimum standards.Methods and analysisThis study is a national, multicentre mixed methods project and has been designed in keeping with guidance from the International Patient Decision Aids Standard.This study is in four stages. In stage 1, we will develop the PtDA and its content using agile developmental methodology. In stage 2, we will assess the content and face validity of the PtDA using mixed-methods with key stakeholders. In stage 3, we will assess the feasibility and efficacy of the PtDA. In stage 4, we will establish the barriers and facilitators to the use of a PtDA in the outpatient setting. Questionnaires including the QQ-10, EORTC PATSAT-C33, Preparation for Decision-Making Scale and the NoMAD survey will be analysed during the study. Interviews will be analysed using thematic analysis.Ethics and disseminationResearch ethics approval from North of Scotland Research Ethics Service 19/NS/0056 (IRAS 257890) has been granted. Results will be published in open access peer-reviewed journals, presented in conferences and distributed through bowel research UK charity. External endorsement will be sought from the International Patient Decision Standards Collaboration inventory of PtDAs.PROSPERO registration numberCRD42019122933.

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“…Systematic reviews of PubMed, Cochrane databases and DALI to identify literature relating to decision aids for PE. 18 …”

Section: Methodsmentioning

confidence: 99%

“…A review of the grey literature registered on PROSPERO to identify key perspectives and priorities important to patients when making decisions. 18 …”

Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Designing and evaluating a patient decision aid for patients with locally advanced or locally recurrent rectal cancer: a national multicentre mixed methods study protocol

et al. 2022

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“…Previous studies have explored the quality and availability of online patient information in surgical treatment decision making for other surgical conditions [13,[15][16][17], but no assessment has yet been made of the quality and content of patient information for patients considering PSH treatment. Our aim was to examine the quality and content of current online information for patients considering PSH treatment.…”

Section: Introductionmentioning

confidence: 99%

Assessment of the quality of online patient information resources for patients considering parastomal hernia treatment

Blackwell,

Clifford,

Pinkney

et al. 2024

Colorectal Disease

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AimThe aim was to examine the quality of online patient information resources for patients considering parastomal hernia treatment.MethodsA Google search was conducted using lay search terms for patient facing sources on parastomal hernia. The quality of the content was assessed using the validated DISCERN instrument. Readability of written content was established using the Flesch–Kincaid score. Sources were also assessed against the essential content and process standards from the National Institute for Health and Care Excellence (NICE) framework for shared decision making support tools. Content analysis was also undertaken to explore what the sources covered and to identify any commonalities across the content.ResultsFourteen sources were identified and assessed using the identified tools. The mean Flesch–Kincaid reading ease score was 43.61, suggesting that the information was difficult to read. The overall quality of the identified sources was low based on the pooled analysis of the DISCERN and Flesch–Kincaid scores, and when assessed against the criteria in the NICE standards framework for shared decision making tools. Content analysis identified eight categories encompassing 59 codes, which highlighted considerable variation between sources.ConclusionsThe current information available to patients considering parastomal hernia treatment is of low quality and often does not contain enough information on treatment options for patients to be able to make an informed decision about the best treatment for them. There is a need for high‐quality information, ideally co‐produced with patients, to provide patients with the necessary information to allow them to make informed decisions about their treatment options when faced with a symptomatic parastomal hernia.

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Utilising quality of life outcome trajectories to aid patient decision making in pelvic exenteration

Harji¹,

Williams²,

McKigney³

et al. 2022

European Journal of Surgical Oncology

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Quality of internet information to aid patient decision making in locally advanced and recurrent rectal cancer

Cited by 6 publications

References 40 publications

Designing and evaluating a patient decision aid for patients with locally advanced or locally recurrent rectal cancer: a national multicentre mixed methods study protocol

Designing and evaluating a patient decision aid for patients with locally advanced or locally recurrent rectal cancer: a national multicentre mixed methods study protocol

Assessment of the quality of online patient information resources for patients considering parastomal hernia treatment

Utilising quality of life outcome trajectories to aid patient decision making in pelvic exenteration

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