Do cervical cancer screening patient information leaflets meet the HPV information needs of women?

OBJECTIVE: New human papillomavirus (HPV) DNA technologies for the detection and prevention of cervical cancer have led to exciting changes in cervical cancer screening worldwide. Their introduction, however, has left many women with unanswered medical and psychosocial HPV questions. This study considered the degree to which women's own HPV questions were addressed in Australian cervical cancer screening patient information leaflets. METHODS: Based on previous qualitative research that asked women to identify their own HPV information needs, categories of interest were identified and a coding framework was developed. Manifest content analysis was conducted by counting the number of times a category of interest was stated in the text of the patient information leaflets (n=75). Latent content analysis methodology was employed to assess the underlying and embedded meaning within the leaflets. RESULTS: Women's medical questions were addressed more frequently than psychosocial ones. Leaflets were designed for specific target audiences (Aboriginal, lesbian, older women, women with disabilities, HPV-specific, cervical cancer-specific and general Pap screening) and the type and amount of HPV information varied by group. Merging the manifest and latent results, we identified three broad themes for discussion: the medicalisation of women's cervical screening experience, the purpose and target audience of cervical screening leaflets and HPV as a community versus women's health issue. CONCLUSIONS: Women's questions on HPV were inconsistently and often inadequately answered. PRACTICE IMPLICATIONS: In order that women's information needs are met, more accurate and balanced representations of medical and psychosocial HPV information should be provided in patient information leaflets.     

Preparatory information for third molar extraction: Does preference for information and behavioral involvement matter?

Objective

The objectives of the present study were to: (1) evaluate the impact of high versus low information provision in terms of anxiety towards third molar extraction (TME) as well as satisfaction with information provision. (2) Investigate how preference for information and behavioral involvement, interacted with the provision of information in terms of satisfaction with information and anxiety related to TME.

Methods

Psychology freshmen completed the Krantz Health Opinion Survey and questions concerning anxiety about TME (pretest). They were randomly allocated into 2 conditions and asked to read either high or low information concerning TME. A posttest questionnaire (anxiety items and evaluation of the information) was then completed.

Results

Data for 320 subjects were analysed (mean age = 20.3, S.D. = 4.0, range 16–51 years). Individual differences in preference for information did not affect outcome variables. There was a clear effect for information condition. The high information text was rated as more informative, requiring less additional information, and led to higher satisfaction by all participants.

Conclusion

Results suggest that more information is preferred, even when taking into account differences in preference for information and behavioral involvement.

Practice Implications

Although more work is needed within samples of actual TME patients, these preliminary findings may have important implications for information provision for this common procedure.     

Do cancer-specific websites meet patient's information needs?

Objective

To evaluate commonly used cancer websites’ information provision, we developed and applied an Information Comprehensiveness Tool to breast and prostate cancer websites.

Methods

We first collated questions from a systematic literature review on patient information needs. We then classified the questions in terms of spectrum of care, theme, and nature of question. “Breast cancer” and “prostate cancer” were typed into Google, and websites listed on the first page of results were selected. Two researchers, blind to each others’ scores, assessed the same websites using the coding system. Each question was scored on a 3-point scale as not (0%), partially (50%) and fully (100%) answered by two researchers. Average scores were calculated across all questions. Inter-rater reliability was assessed.

Results

We identified 79 general, 5 breast, and 5 prostate cancer questions. Inter-rater reliability was good, with an intraclass coefficient of 0.756 (95% CIs 0.729–0.781). 17 questions were not answered thoroughly by any website. Questions about “future planning”, “monitoring”, and “decision-making” were discussed least. Biomedical questions scored highest.

Conclusions

More comprehensive information needs to be provided on breast and prostate cancer websites.

Practice implications

This ICT can improve cancer information online and enable patients to engage more actively regarding their information needs.     

When is vestibular information important during walking?

Locomotion relies on vision, somatosensory input, and vestibular information. Both vision and somatosensory signals have been shown to be phase dependently modulated during locomotion; however, the regulation of vestibular information has not been investigated in humans. By delivering galvanic vestibular stimulation (GVS) to subjects at either heel contact, mid-stance, or toe-off, it was possible to investigate when vestibular information was important during the gait cycle. The results indicated a difference in the vestibular regulation of upper versus lower body control. Upper body responses to GVS applied at different times did not differ in magnitude for the head (P = 0.2383), trunk (P = 0.1473), or pelvis (P = 0.1732) showing a similar dependence on vestibular information for upper body alignment across the gait cycle. In contrast, foot placement was dependent on the time when stimulation was delivered. Changes in foot placement were significantly larger at heel contact (during the double support phase) than when stimulation was delivered at mid-stance (in the single support phase of the gait cycle; P = 0.0193). These latter results demonstrate, for the first time, evidence of phase-dependent modulation of vestibular information during human walking.     

When and how to evaluate health information systems?

AIMS: Evaluating large scale health information systems (HIS) such as hospital systems can be difficult. This article discusses the reasons we need to evaluate these systems and a range of appropriate methods to carry out evaluations. It is written in non-technical language to assist health policy makers and others commissioning or implementing such systems, with references and a web site containing information for those wishing more detail (http://www.ucl.ac.uk/kmc/evaluation/index.html). METHODS: A variety of questions relevant to HIS and qualitative and quantitative methods ranging from simple before-after to controlled before-after and fully randomised designs, are discussed. A running example--evaluating the impact of an order communications system on lab requests--is used to illustrate the potential problems, and how they can be resolved. RESULTS: The main types of biases affecting impact studies and methods to reduce them are described. The article then discusses some trade-offs between the low cost, easily conducted before-after study with its unreliable results versus the more complex, expensive but much more rigorous randomised trial. CONCLUSIONS: As would be expected, the correct methods to evaluate depend not on what technology is being evaluated--whether an information system or a drug--but on the questions the study is designed to answer, and how reliable the answers must be. Only those commissioning an evaluation study can decide these.     

Balanced information about Down syndrome: What is essential?

The purpose of this study was to explore the perspectives of genetic counselors and parents of children with Down syndrome to define essential information for the initial discussion of a new diagnosis. We compared information given in both prenatal and postnatal settings, and also aimed to distinguish differences between the informational needs of parents and the information genetic counselors provide. Online surveys were distributed to members of the National Down Syndrome Congress, National Down Syndrome Society, and National Society of Genetic Counselors. Participants included 993 parents of children with Down syndrome and 389 genetic counselors. Participants rated 100 informational features about Down syndrome as Essential, Important, or Not Too Important for inclusion in the first discussion of the diagnosis. Responses identified 34 essential informational items for the initial discussion of Down syndrome, including clinical features, developmental abilities, a range of prognostications, and informational resources. Healthcare providers should consider incorporating these items in their initial discussion of a diagnosis in both prenatal and postnatal settings. Statistically significant differences between parent and genetic counselor responses illustrate that information is valued differently and that parents appreciate information about the abilities and potential of people with Down syndrome, as opposed to clinical details. Balancing clinical information with other aspects of the condition, as well as a better understanding of the information parents consider most important, may enable healthcare professionals to more effectively satisfy families' informational needs following a new diagnosis of Down syndrome.     

Is the auditory sensory memory sensitive to visual information?

The mismatch negativity (MMN) component of auditory event-related brain potentials can be used as a probe to study the representation of sounds in auditory sensory memory (ASM). Yet it has been shown that an auditory MMN can also be elicited by an illusory auditory deviance induced by visual changes. This suggests that some visual information may be encoded in ASM and is accessible to the auditory MMN process. It is not known, however, whether visual information affects ASM representation for any audiovisual event or whether this phenomenon is limited to specific domains in which strong audiovisual illusions occur. To highlight this issue, we have compared the topographies of MMNs elicited by non-speech audiovisual stimuli deviating from audiovisual standards on the visual, the auditory, or both dimensions. Contrary to what occurs with audiovisual illusions, each unimodal deviant elicited sensory-specific MMNs, and the MMN to audiovisual deviants included both sensory components. The visual MMN was, however, different from a genuine visual MMN obtained in a visual-only control oddball paradigm, suggesting that auditory and visual information interacts before the MMN process occurs. Furthermore, the MMN to audiovisual deviants was significantly different from the sum of the two sensory-specific MMNs, showing that the processes of visual and auditory change detection are not completely independent.     

Genetic information and life insurance: a 'real' risk?

Public concern about genetic discrimination, particularly access to insurance following genetic testing, has been reported in the literature. This paper aims to separate myths from realities regarding genetic discrimination in life insurance and to underline the positive aspects of allowing insurers access to relevant genetic information for underwriting purposes. We present a review of the literature pertinent to discrimination in life insurance and a comparative analysis of industries guidelines. There are few reported cases in the literature of validated genetic discrimination. However, the benefits to be gained by allowing insurers access to relevant genetic data could justify fostering a more active role in the use of genetic information by insurance companies.     

“When information is not enough”: A model for understanding BRCA-positive previvors’ information needs regarding hereditary breast and ovarian cancer risk

ObjectiveTo investigate BRCA-positive, unaffected patients’ – referred to as previvors – information needs after testing positive for a deleterious BRCA genetic mutation.Methods25 qualitative interviews were conducted with previvors. Data were analyzed using the constant comparison method of grounded theory.ResultsAnalysis revealed a theoretical model of previvors’ information needs related to the stage of their health journey. Specifically, a four-stage model was developed based on the data: (1) pre-testing information needs, (2) post-testing information needs, (3) pre-management information needs, and (4) post-management information needs. Two recurring dimensions of desired knowledge also emerged within the stages—personal/social knowledge and medical knowledge.ConclusionsWhile previvors may be genetically predisposed to develop cancer, they have not been diagnosed with cancer, and therefore have different information needs than cancer patients and cancer survivors.Practice ImplicationsThis model can serve as a framework for assisting healthcare providers in meeting the specific information needs of cancer previvors.     

Online health information seeking by adults hospitalized for acute coronary syndromes: Who looks for information,and who discusses it with healthcare providers?

Objective

To describe characteristics associated with online health information-seeking and discussing resulting information with healthcare providers among adults with acute coronary syndromes (ACS).

Using information technology for patient education: realizing surplus value?

Computer-based patient information systems are introduced to replace traditional forms of patient education like brochures, leaflets, videotapes and, to a certain extent, face-to-face communication. In this paper, we claim that though computer-based patient information systems potentially have many advantages compared to traditional means, the surplus value of these systems is much harder to realize than often expected. By reporting on two computer-based patient information systems, both found to be unsuccessful, we will show that building computer-based patient information systems for patient education requires a thorough analysis of the advantages and limitations of IT compared to traditional forms of patient education. When this condition is fulfilled, however, these systems have the potential to improve health status and to be a valuable supplement to (rather than a substitute for) traditional means of patient education.