Empowerment of Parents of Children With Craniosynostosis by Objective Scoring of Patient Information Websites

Lafferty, Kirsten; Horton, Johan; Noons, Peter; Dover, Stephen; Evans, Martin

doi:10.1097/scs.0000000000002623

Cited by 11 publications

(17 citation statements)

References 5 publications

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“…This process has recently been investigated as a method to rank and navigate biomedical literature [70]. There is some evidence that higher ranked sites describing medical information have higher quality content and easier readability [71,72]; however, others do not corroborate these findings [73,74]. To our knowledge, few analyses of website content include search engine ranking, but this area should be investigated further as patients often equate popular sites with reliable information.…”

Section: Discussionmentioning

confidence: 99%

Online Health Information Regarding Male Infertility: An Evaluation of Readability, Suitability, and Quality

Robins¹,

Barr²,

Idelson³

et al. 2016

Interact J Med Res

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BackgroundMany men lack knowledge about male infertility, and this may have consequences for their reproductive and general health. Men may prefer to seek health information online, but these sources of information vary in quality.ObjectiveThe objective of this study is to determine if online sources of information regarding male infertility are readable, suitable, and of appropriate quality for Internet users in the general population.MethodsThis study used a cross-sectional design to evaluate online sources resulting from search engine queries. The following categories of websites were considered: (1) Canadian fertility clinics, (2) North American organizations related to fertility, and (3) the first 20 results of Google searches using the terms “male infertility” and “male fertility preservation” set to the search locations worldwide, English Canada, and French Canada. Websites that met inclusion criteria (N=85) were assessed using readability indices, the Suitability Assessment of Materials (SAM), and the DISCERN tool. The associations between website affiliation (government, university/medical, non-profit organization, commercial/corporate, private practice) and Google placement to readability, suitability, and quality were also examined.ResultsNone of the sampled websites met recommended levels of readability. Across all websites, the mean SAM score for suitability was 45.37% (SD 11.21), or “adequate”, while the DISCERN mean score for quality was 43.19 (SD 10.46) or “fair”. Websites that placed higher in Google obtained a higher overall score for quality with an r (58) value of -.328 and a P value of .012, but this position was not related to readability or suitability. In addition, 20% of fertility clinic websites did not include fertility information for men.ConclusionsThere is a lack of high quality online sources of information on male fertility. Many websites target their information to women, or fail to meet established readability criteria for the general population. Since men may prefer to seek health information online, it is important that health care professionals develop high quality sources of information on male fertility for the general population.

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Section: Discussionmentioning

confidence: 99%

Online Health Information Regarding Male Infertility: An Evaluation of Readability, Suitability, and Quality

Robins¹,

Barr²,

Idelson³

et al. 2016

Interact J Med Res

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show abstract

“…Many studies have highlighted the long-term emotional impact on the parents if the child's diagnosis and prognosis are not accurately and sensitively described (eg, Lalor et al, 2008; Costa et al, 2019). Previous research has shown that information about craniosynostosis is available online but can be difficult to access (Lloyd et al, 2016), yet, that even a brief information leaflet can reduce parental anxiety (Pidgeon et al, 2017). This study adds to the existing body of literature demonstrating the importance of providing accurate, individualized information at the point of diagnosis and throughout the treatment pathway, to reduce familial distress and facilitate the adjustment.…”

Section: Discussionmentioning

confidence: 99%

Psychological Adjustment in Apert Syndrome: Parent and Young Person Perspectives

Netherton

Horton

Stock

et al. 2021

The Cleft Palate Craniofacial Journal

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To date, limited research has been carried out into the psychological impact of having a diagnosis of Apert syndrome (AS) and the life experiences of families living with this condition. The aim of the current study was to explore psychological adjustment to AS from the perspectives of young people, and their parents, with the broader goal of informing care, and support for this population. Four young people (2 male) aged 11 to 15 years and their mothers were interviewed in their homes using a semistructured interview guide and photo-elicitation methods. Transcripts were analyzed using Interpretive Phenomenological Analysis. Three superordinate themes were identified from the data: (1) Acceptance and Adjustment: A Cyclical Journey; (2) A Barrier to Adjustment: Navigating Treatment; and (3) Facilitating Adjustment: Social Support. Families described adjustment as a cyclical process, which was sensitive to change, particularly in the context of ongoing medical treatment. Families also utilized many resources, particularly in the form of social support, to adjust to the challenges of AS and build resilience. The findings of this study have important implications for the implementation of patient-centered care within designated craniofacial treatment centers, which should at a minimum include the provision of reliable information throughout the treatment pathway, additional support from health professionals at key times of transition, and the coordination of support across medical teams, and other key organizations in the child's life.

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“…This is consistent with publications on other conditions. [13][14][15][16] We also found that the term ''haemangioma'' is commonly misused to describe any type of vascular anomaly. This is also consistent with previous research.…”

Section: Discussionmentioning

confidence: 99%

“…This is also supported by previous research. [13][14][15][16] The reason for this could be multifactorial. Google uses over 200 factors in their ranking algorithm which include: keywords, site structure and security and speed, inbuilt links as well as users stored characteristics.…”

Section: Discussionmentioning

confidence: 99%

Objective Scoring of Information Websites for Vascular Anomalies

Sepehripour

2021

Journal of Craniofacial Surgery

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One of the challenging aspects of caring for patients with vascular anomalies has been the use of inconsistent terminologies which has resulted in inconsistencies with treatment, miscommunication between clinicians, and subsequently patient misinformation and confusion. In this study, we objectively assessed the quality of online information on vascular anomalies. Our results emphasize the crucial role of vascular anomaly services in the communication and provision of patient information.

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Empowerment of Parents of Children With Craniosynostosis by Objective Scoring of Patient Information Websites

Cited by 11 publications

References 5 publications

Online Health Information Regarding Male Infertility: An Evaluation of Readability, Suitability, and Quality

Online Health Information Regarding Male Infertility: An Evaluation of Readability, Suitability, and Quality

Psychological Adjustment in Apert Syndrome: Parent and Young Person Perspectives

Objective Scoring of Information Websites for Vascular Anomalies

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