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Older individuals' views on their personal screening results for complex health problems: a qualitative study.

ABSTRACT: BACKGROUND:Providing older persons with information about their health status may increase their involvement in their own health and enhance self-management. However, we need a better understanding of how older persons view their personal results after completing a screening questionnaire on complex health, of their (lack of) motivation and their subsequent action. METHODS:In this qualitative study community-dwelling older persons (?80?years, n?=?13) who completed a screening questionnaire on complex health problems were interviewed regarding their perception of the results, the actions they considered taking and their personal motivations. Data were analysed thematically (qualitative content analyses). RESULTS:Participants expressed interest in feedback, as an objective questionnaire might substantiate their own views regarding their personal health. They were mostly unsurprised by the results and/or had already taken precautions and were therefore not inclined to undertake additional action. They admitted difficulty with and appreciated advice from a professional regarding preparation of an action plan. Unexpected negative results would lead them to discuss matters with family and/or their general practitioner, provided they had a good relationship with their GP. CONCLUSION:Older people were interested in direct feedback regarding their screening questionnaire results and in subsequent advice on possible additional measures. General practices could consider inviting older persons to complete a screening questionnaire and discuss activities and personal goals. This information could serve to better shape future interventions aimed at increasing self-management amongst older persons.

SUBMITTER: van Blijswijk SCE

PROVIDER: S-EPMC7574169 | biostudies-literature | 2020 Oct

REPOSITORIES: biostudies-literature

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Older individuals' views on their personal screening results for complex health problems: a qualitative study.

van Blijswijk Sophie C E SCE van Tol Lisa S LS Blom Jeanet W JW den Elzen Wendy P J WPJ Gussekloo Jacobijn J

BMC family practice 20201019 1

<h4>Background</h4>Providing older persons with information about their health status may increase their involvement in their own health and enhance self-management. However, we need a better understanding of how older persons view their personal results after completing a screening questionnaire on complex health, of their (lack of) motivation and their subsequent action.<h4>Methods</h4>In this qualitative study community-dwelling older persons (≥80 years, n = 13) who completed a screening ques ...[more]

PMID: 33076822

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Project description:BackgroundResearchers are currently investigating the feasibility, acceptability, and efficacy of digital health interventions for people who experience severe mental health problems such as psychosis and bipolar disorder. Although the acceptability of digital health interventions for severe mental health problems appears to be relatively high and some people report successfully using the Internet and mobile phones to manage their mental health, the attitudes of mental health care staff toward such approaches have yet to be considered.ObjectiveThe aim of this study was to explore mental health care staff experiences of clients with severe mental health problems engaging with the Internet and mobile phones to self-manage their mental health and their views toward these behaviors. The study also sought to examine the opinions expressed by mental health care staff toward digital health interventions for severe mental health problems to identify potential facilitators and barriers to implementation.MethodsFour focus groups were conducted with 20 staff working in mental health care services in the North West of the England using a topic guide. Focus groups involved 12 staff working in secondary care psychological services (7 participants in focus group 1 and 5 participants in focus group 4), 4 staff working in a rehabilitation unit (focus group 2), and 4 staff working in a community mental health team (focus group 3). Focus groups were transcribed verbatim, and transcripts were analyzed thematically to identify key themes that emerged from the data.ResultsFour overarching themes, two with associated subthemes, were identified: (1) staff have conflicting views about the pros and cons of using Web-based resources and digital health interventions to manage mental health; (2) digital health interventions could increase access to mental health support options for severe mental health problems but may perpetuate the digital divide; (3) digital health interventions' impact on staff roles and responsibilities; and (4) digital health interventions should be used to enhance, not replace, face-to-face support.ConclusionsThis study is the first, to our knowledge, to qualitatively explore the experiences and attitudes of mental health care staff toward individuals with severe mental health problems using the Internet, mobile phones, and digital health interventions to self-manage their mental health. Understanding the positive and negative experiences and views shared by staff toward both current and potential digital health intervention use has enabled the identification of several considerations for implementation. Additionally, the findings suggest mental health care staff need clear guidance and training in relation to their responsibilities in recommending reputable and secure websites, forums, and digital health interventions and in how to manage professional boundaries on the Internet. Overall, the study highlights that digital health interventions could be well received by staff working in mental health services but importantly, such management options must be presented to frontline staff as an avenue to enhance care and extend choice, rather than as a method to reduce costs.

Project description:ImportanceDigital health information has many potential health applications, but privacy is a growing concern among consumers and policy makers. Consent alone is increasingly seen as inadequate to safeguard privacy.ObjectiveTo determine whether different privacy protections are associated with consumers' willingness to share their digital health information for research, marketing, or clinical uses.Design, setting, and participantsThis 2020 national survey with an embedded conjoint experiment recruited US adults from a nationally representative sample with oversampling of Black and Hispanic individuals. Willingness to share digital information across 192 different scenarios reflecting the product of 4 possible privacy protections, 3 uses of information, 2 users of information, and 2 sources of digital information was evaluated. Each participant was randomly assigned 9 scenarios. The survey was administrated between July 10 and July 31, 2020, in Spanish and English. Analysis for this study was conducted between May 2021 and July 2022.Main outcomes and measuresParticipants rated each conjoint profile on a 5-point Likert scale measuring their willingness to share their personal digital information (with 5 indicating the most willingness to share). Results are reported as adjusted mean differences.ResultsOf the 6284 potential participants, 3539 (56%) responded to the conjoint scenarios. A total of 1858 participants (53%) were female, 758 (21%) identified as Black, 833 (24%) identified as Hispanic, 1149 (33%) had an annual income less than $50 000, and 1274 (36%) were 60 years or older. Participants were more willing to share health information with the presence of each individual privacy protection, including consent (difference, 0.32; 95% CI, 0.29-0.35; P < .001), followed by data deletion (difference, 0.16; 95% CI, 0.13-0.18; P < .001), oversight (difference, 0.13; 95% CI, 0.10-0.15; P < .001), and transparency of data collected (difference, 0.08; 95% CI, 0.05-0.10; P < .001). The relative importance (importance weight on a 0%-100% scale) was greatest for the purpose of use (29.9%) but when considered collectively, the 4 privacy protections together were the most important (51.5%) factor in the conjoint experiment. When the 4 privacy protections were considered separately, consent was the most important (23.9%).Conclusions and relevanceIn this survey study of a nationally representative sample of US adults, consumers' willingness to share personal digital health information for health purposes was associated with the presence of specific privacy protections beyond consent alone. Additional protections, including data transparency, oversight, and data deletion may strengthen consumer confidence in sharing their personal digital health information.

Project description:ImportanceOlder adults with limited life expectancy are frequently screened for cancer even though it exposes them to risks of screening with minimal benefit. Patient preferences may be an important contributor to continued screening.ObjectiveTo examine older adults' views on the decision to stop cancer screening when life expectancy is limited and to identify older adults' preferences for how clinicians should communicate recommendations to cease cancer screening.Design, setting, and participantsIn this semistructured interview study, we interviewed 40 community-dwelling older adults (≥ 65 years) recruited at 4 clinical programs affiliated with an urban academic medical center.Main outcomes and measureWe transcribed the audio recorded discussions and analyzed the transcripts using standard techniques of qualitative content analysis to identify major themes and subthemes.ResultsThe participants' average age was 75.7 years. Twenty-three participants (57.5%) were female; 25 (62.5%) were white. Estimated life expectancy was less than 10 years for 19 participants (47.5%). We identified 3 key themes. First, participants were amenable to stopping cancer screening, especially in the context of a trusting relationship with their clinician. Second, although many participants supported using age and health status to individualize the screening decision, they did not often understand the role of life expectancy. All except 2 participants objected to a Choosing Wisely statement about not recommending cancer screening in those with limited life expectancy, often believing that clinicians cannot accurately predict life expectancy. Third, participants preferred that clinicians explain a recommendation to stop screening by incorporating individual health status but were divided on whether life expectancy should be mentioned. Specific wording of life expectancy was important; many felt the language of "you may not live long enough to benefit from this test" was unnecessarily harsh compared with the more positive messaging of "this test would not help you live longer."Conclusions and relevanceAlthough research and clinical practice guidelines recommend using life expectancy to inform cancer screening, older adults may not consider life expectancy important in screening and may not prefer to hear about life expectancy when discussing screening. The described communication preferences can help inform future screening discussions. Better delineating patient-centered approaches to discuss screening cessation is an important step toward optimizing cancer screening in older adults.

Project description:BACKGROUND: Developments in enzyme replacement therapy have kindled discussions on adding Pompe disease, characterized by progressive muscle weakness and wasting, to neonatal screening. Pompe disease does not fit traditional screening criteria as it is a broad-spectrum phenotype disorder that may occur in lethal form in early infancy or manifest in less severe forms from infancy to late adulthood. Current screening tests cannot differentiate between these forms. Normally, expanding screening is discussed among experts in advisory bodies. While advisory reports usually mention the procedures and outcome of deliberations, little is known of the importance attached to different arguments and the actual weighing processes involved. In this research we aim to explore the views of a wide range of relevant professionals to gain more insight into the process of weighing pros and cons of neonatal screening for Pompe disease, as an example of the dilemmas involved in screening for broad-spectrum phenotype disorders. METHODS: We conducted 24 semi-structured interviews with medical, lab, insurance and screening professionals, and executive staff of patient organisations. They were asked about their first reaction to neonatal screening for Pompe disease, after which benefits and harms and requirements for screening were explored in more detail. RESULTS: Advantages included health gain by timely intervention, avoiding a diagnostic quest, having a reproductive choice and gaining more knowledge about the natural course and treatment. Being prepared was mentioned as an advantage for the later manifesting cases. Disadvantages included treatment costs and uncertainties about its effect, the timing of treatment in later manifesting cases, the psychological burden for the patient-in-waiting and the family. Also the downsides of having prior knowledge as well as having to consider a reproductive option were mentioned as disadvantages. CONCLUSION: When weighing pros and cons, interviewees attach different importance to different arguments, based on personal and professional views. Professionals expect benefits from neonatal screening for Pompe disease, especially for early-onset cases. Some interviewees valued screening in later manifesting cases as well, while stressing the need for adequate support of pre-symptomatic patients and their families. Others considered the psychological burden and uncertainties regarding treatment as reasons not to screen.

Dataset Information

Older individuals' views on their personal screening results for complex health problems: a qualitative study.

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Older individuals' views on their personal screening results for complex health problems: a qualitative study.

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