Evaluation of patients’ questions to identify gaps in information provision to infertile patients

Belt, Tom H van de; Hendriks, Arnolf F. W.; Aarts, Johanna W.M.; Kremer, J.A.M.; Faber, Marjan J.; Nelen, W.L.D.M.

doi:10.3109/14647273.2014.912762

Cited by 9 publications

(8 citation statements)

References 29 publications

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“…Furthermore, these topics cover themes that seem to lack in traditional patient information leaflets or in face-to-face encounters [23], implying the value of the forum as an additional information channel.…”

Section: Discussionmentioning

confidence: 99%

Communication at an online infertility expert forum: provider responses to patients’ emotional and informational cues

Aarts

Oers

Faber

et al. 2015

Journal of Psychosomatic Obstetrics & Gynecology

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Online patient-provider communication has become increasingly popular in fertility care. However, it is not known to what extent patients express cues or concerns and how providers respond. In this study, we investigated cues and responses that occur in online patient-provider communication at an infertility-specific expert forum. We extracted 106 threads from the multidisciplinary expert forum of two Dutch IVF clinics. We performed the following analyses: (1) thematic analysis of patients' questions; and (2) rating patients' emotional and informational cues and subsequent professionals' responses using an adaptation of the validated Medical Interview Aural Rating Scale. Frequencies of themes, frequencies of cues and responses, and sequences (what cue is followed by what response) were extracted. Sixty-five infertile patients and 19 providers participated. The most common themes included medication and lifestyle. Patients gave more informational than emotional cues (106 versus 64). Responses to informational cues were mostly adequate (61%). The most common response to emotional cues was empathic acknowledgment (72%). Results indicate that an online expert forum could have a positive effect on patient outcomes, which should guide future research. Offering infertile patients an expert forum to communicate with providers can be a promising supplement to usual care in both providing information and addressing patients' concerns.

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Section: Discussionmentioning

confidence: 99%

Communication at an online infertility expert forum: provider responses to patients’ emotional and informational cues

Aarts

Oers

Faber

et al. 2015

Journal of Psychosomatic Obstetrics & Gynecology

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show abstract

“…The results suggested that evidence-based information in various formats (eg, fact sheets, trusted websites, and podcasts) could help women with polycystic ovary syndrome make informed decisions about childbearing and achieve their reproductive goals. Van De Belt et al [ 12 ] analyzed questions in online forums and phone consultations to examine the gaps in information provision to infertile Dutch patients. The results showed that infertile patients demand high-quality health information and the information from health care providers did not cover all reported consumer information needs.…”

Section: Resultsmentioning

confidence: 99%

“…The results showed that infertile patients demand high-quality health information and the information from health care providers did not cover all reported consumer information needs. Hence providers should explore new means of health information creation that involve the patient perspective [ 12 ].…”

Section: Resultsmentioning

confidence: 99%

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Understanding Information Needs and Barriers to Accessing Health Information Across All Stages of Pregnancy: Systematic Review

Yu¹,

Barrett²,

Lin³

et al. 2022

JMIR Pediatr Parent

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Background Understanding consumers’ health information needs across all stages of the pregnancy trajectory is crucial to the development of mechanisms that allow them to retrieve high-quality, customized, and layperson-friendly health information. Objective The objective of this study was to identify research gaps in pregnancy-related consumer information needs and available information from different sources. Methods We conducted a systematic review of CINAHL, Cochrane, PubMed, and Web of Science for relevant articles that were published from 2009 to 2019. The quality of the included articles was assessed using the Critical Appraisal Skills Program. A descriptive data analysis was performed on these articles. Based on the review result, we developed the Pregnancy Information Needs Ontology (PINO) and made it publicly available in GitHub and BioPortal. Results A total of 33 articles from 9 countries met the inclusion criteria for this review, of which the majority were published no earlier than 2016. Most studies were either descriptive (9/33, 27%), interviews (7/33, 21%), or surveys/questionnaires (7/33, 21%); 20 articles mentioned consumers’ pregnancy-related information needs. Half (9/18, 50%) of the human-subject studies were conducted in the United States. More than a third (13/33, 39%) of all studies focused on during-pregnancy stage; only one study (1/33, 3%) was about all stages of pregnancy. The most frequent consumer information needs were related to labor delivery (9/20, 45%), medication in pregnancy (6/20, 30%), newborn care (5/20, 25%), and lab tests (6/20, 30%). The most frequently available source of information was the internet (15/24, 63%). PINO consists of 267 classes, 555 axioms, and 271 subclass relationships. Conclusions Only a few articles assessed the barriers to access to pregnancy-related information and the quality of each source of information; further work is needed. Future work is also needed to address the gaps between the information needed and the information available.

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“…Another reason for patients to seek information on forums could be because of inadequate information provision channels (eg, verbal or written folders) provided by professionals or inadequate informational content in existing materials. Van de Belt et al [ 25 ] analyzed whether the questions patients asked on an online forum could be answered with the information that was provided in the patient folders. About half of the patients’ questions could not be answered with the information from the patient folders.…”

Section: Discussionmentioning

confidence: 99%

The Contribution of Online Peer-to-Peer Communication Among Patients With Adrenal Disease to Patient-Centered Care

Kauw

Repping-Wuts²,

Noordzij³

et al. 2015

J Med Internet Res

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BackgroundAddison’s disease and Cushing’s syndrome are rare. The Dutch Adrenal Society offers an online forum for Dutch adrenal patients to meet and communicate. However, little is known about the added value such a forum has for the delivery of patient-centered care.ObjectiveOur aim was to analyze the purposes of online patient-to-patient forum conversations, within the context of patient-centered care.MethodsFor this study a consecutive sample of 300 questions (“threads”) from the past 3.5 years was selected from the forum. The content of these patient-driven questions was analyzed based on the dimensions of patient-centeredness of the Picker Institute. This analysis was performed using ATLAS.ti.ResultsFrom the 390 questions analyzed, 80.8% (N=315) were intended to gain more information about the disease, the treatment, and to verify if other patients had similar complaints. To a much lesser extent (38/390, 9.7%), questions expressed a call for emotional support. Patients answered primarily by giving practical tips to fellow patients and to share their own experiences.ConclusionsOn an online patient forum for Cushing’s syndrome and Addison’s disease, patients appear to primarily gain knowledge and, to a lesser extent, emotional support from their peers. This experience-based knowledge has become a very important information source. As such, patients can make a substantial contribution to the creation of patient-centered care if this knowledge is integrated into the care provided by health care professionals.

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Evaluation of patients’ questions to identify gaps in information provision to infertile patients

Cited by 9 publications

References 29 publications

Communication at an online infertility expert forum: provider responses to patients’ emotional and informational cues

Communication at an online infertility expert forum: provider responses to patients’ emotional and informational cues

Understanding Information Needs and Barriers to Accessing Health Information Across All Stages of Pregnancy: Systematic Review

The Contribution of Online Peer-to-Peer Communication Among Patients With Adrenal Disease to Patient-Centered Care

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