| 1. |
- Børøsund, Elin, et al.
(författare)
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Comparing effects in regular practice of e-communication and web-based self-management support among breast cancer patients : Preliminary results from a randomized controlled trial
- 2014
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Ingår i: Journal of Medical Internet Research. - : JMIR Publications Inc.. - 1438-8871. ; 16:12
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Tidskriftsartikel (refereegranskat)abstract
- Background: While Web-based interventions have been shown to assist a wide range of patients successfully in managing their illness, few studies have examined the relative contribution of different Web-based components to improve outcomes. Further efficacy trials are needed to test the effects of Web support when offered as a part of routine care. Objective: Our aim was to compare in regular care the effects of (1) an Internet-based patient provider communication service (IPPC), (2) WebChoice, a Web-based illness management system for breast cancer patients (IPPC included), and (3) usual care on symptom distress, anxiety, depression, (primary outcomes), and self-efficacy (secondary outcome). This study reports preliminary findings from 6 months' follow-up data in a 12-month trial. Methods: We recruited 167 patients recently diagnosed with breast cancer and undergoing treatment from three Norwegian hospitals. The nurse-administered IPPC allowed patients to send secure e-messages to and receive e-messages from health care personnel at the hospital where they were treated. In addition to the IPPC, WebChoice contains components for symptom monitoring, tailored information and self-management support, a diary, and communication with other patients. A total of 20 care providers (11 nurses, 6 physicians, and 3 social workers) were trained to answer questions from patients. Outcomes were measured with questionnaires at study entry and at study months 2, 4, and 6. Linear mixed models for repeated measures were fitted to compare effects on outcomes over time. Results: Patients were randomly assigned to the WebChoice group (n=64), the IPPC group (n=45), or the usual care group (n=58). Response rates to questionnaires were 73.7% (123/167) at 2 months, 65.9 (110/167) at 4 months, and 62.3% (104/167) at 6 months. Attrition was similar in all study groups. Among those with access to WebChoice, 64% (41/64) logged on more than once and 39% (25/64) sent e-messages to care providers. In the IPPC group, 40% (18/45) sent e-messages. Linear mixed models analyses revealed that the WebChoice group reported significantly lower symptom distress (mean difference 0.16, 95% CI 0.06-0.25, P=.001), anxiety (mean difference 0.79, 95% CI 0.09-1.49, P=.03), and depression (mean difference 0.79, 95% CI 0.09-1.49, P=.03) compared with the usual care group. The IPPC group reported significant lower depression scores compared with the usual care group (mean difference 0.69, 95% CI 0.05-1.32, P=.03), but no differences were observed for symptom distress or anxiety. No significant differences in self-efficacy were found among the study groups. Conclusions: In spite of practice variations and moderate use of the interventions, our results suggest that offering Web support as part of regular care can be a powerful tool to help patients manage their illness. Our finding that a nurse-administered IPPC alone can significantly reduce depression is particularly promising. However, the multicomponent intervention WebChoice had additional positive effects.
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| 2. |
- Børøsund, Elin, et al.
(författare)
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How user characteristics affect use patterns in web-based illness management support for patients with breast and prostate cancer
- 2013
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Ingår i: Journal of Medical Internet Research. - : JMIR Publications Inc.. - 1438-8871. ; 15:3
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Frequently eHealth applications are not used as intended and they have high attrition rates; therefore, a better understanding of patients' need for support is warranted. Specifically, more research is needed to identify which system components target different patient groups and under what conditions.OBJECTIVE: To explore user characteristics associated with the use of different system components of a Web-based illness management support system for cancer patients (WebChoice).METHODS: For this secondary post hoc analysis of a large randomized controlled trial (RCT), in which WebChoice was tested among 325 breast cancer and prostate cancer patients who were followed with repeated measures for 1 year, usage patterns of 162 cancer patients in the intervention arm with access to WebChoice were extracted from the user log. Logistic regression was performed to identify patterns of associations between system use and patient characteristics. Latent class analyses (LCA) were performed to identify associations among the use of different system components and levels of social support, symptom distress, depression, self-efficacy, and health-related quality of life.RESULTS: Approximately two-thirds (103/162, 63.6%) of the patients logged on to WebChoice more than once, and were defined as users. A high level of computer experience (odds ratio [OR] 3.77, 95% CI 1.20-11.91) and not having other illnesses in addition to cancer (OR 2.10, 95% CI 1.02-4.34) increased the overall probability of using WebChoice. LCA showed that both men with prostate cancer and women with breast cancer who had low scores on social support accompanied with high levels of symptom distress and high levels of depression were more likely to use the e-message component. For men with prostate cancer, these variables were also associated with high use of the self-management advice component. We found important differences between men with prostate cancer and women with breast cancer when associations between WebChoice use and each user characteristic were analyzed separately. High use of all components was associated with low levels of social support among women with breast cancer, but not among men with prostate cancer. High use of e-messages, advice, and the discussion forum were associated with high levels of depression among women with breast cancer, but not among men with prostate cancer. For men with prostate cancer (but not women with breast cancer), high use of symptom assessments, advice, and the discussion forum were associated with high levels of symptom distress. However, it is unclear whether these findings can be attributed to differences related to diagnosis, gender, or both.CONCLUSIONS: This study provides evidence that different user characteristics are associated with different use patterns. Such information is crucial to target Web-based support systems to different patient groups. LCA is a useful technique to identify subgroups of users. In our study, e-messages and self-management advice were highly used components for patients who had low levels of social support and high illness burden, suggesting that patients with these characteristics may find such tools particularly useful.
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| 3. |
- Chang, Fangyuan, et al.
(författare)
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Domesticating Social Alarm Systems in Nursing Homes : Qualitative Study of Differences in the Perspectives of Assistant Nurses
- 2023
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Ingår i: Journal of Medical Internet Research. - : JMIR Publications Inc.. - 1438-8871. ; 25
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Tidskriftsartikel (refereegranskat)abstract
- Background: New social alarm solutions are viewed as a promising approach to alleviate the global challenge of an aging population and a shortage of care staff. However, the uptake of social alarm systems in nursing homes has proven both complex and difficult. Current studies have recognized the benefits of involving actors such as assistant nurses in advancing these implementations, but the dynamics by which implementations are created and shaped in their daily practices and relations have received less attention. Objective: Based on domestication theory, this paper aims to identify the differences in the perspectives of assistant nurses when integrating a social alarm system into daily practices. Methods: We interviewed assistant nurses (n=23) working in nursing homes to understand their perceptions and practices during the uptake of social alarm systems. Results: During the four domestication phases, assistant nurses were facing different challenges including (1) system conceptualization; (2) spatial employment of social alarm devices; (3) treatment of unexpected issues; and (4) evaluation of inconsistent competence in technology use. Our findings elaborate on how assistant nurses have distinct goals, focus on different facets, and developed diverse coping strategies to facilitate the system domestication in different phases. Conclusions: Our findings reveal a divide among assistant nurses in terms of domesticating social alarm systems and stress the potential of learning from each other to facilitate the whole process. Further studies could focus on the role of collective practices during different domestication phases to enhance the understanding of technology implementation in the contexts of complex interactions within a group.
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| 4. |
- Christensen, S. E., et al.
(författare)
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Relative Validity of Micronutrient and Fiber Intake Assessed With Two New Interactive Meal- and Web-Based Food Frequency Questionnaires
- 2014
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Ingår i: Journal of Medical Internet Research. - : JMIR Publications Inc.. - 1438-8871. ; 16:2
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Tidskriftsartikel (refereegranskat)abstract
- Background: The meal-and Web-based food frequency questionnaires, Meal-Q and MiniMeal-Q, were developed for cost-efficient assessment of dietary intake in epidemiological studies. Objective: The objective of this study was to evaluate the relative validity of micronutrient and fiber intake assessed with Meal-Q and MiniMeal-Q. The reproducibility of Meal-Q was also evaluated. Methods: A total of 163 volunteer men and women aged between 20 and 63 years were recruited from Stockholm County, Sweden. Assessment of micronutrient and fiber intake with the 174-item Meal-Q was compared to a Web-based 7-day weighed food record (WFR). Two administered Meal-Q questionnaires were compared for reproducibility. The 126-item MiniMeal-Q, developed after the validation study, was evaluated in a simulated validation by using truncated Meal-Q data. Results: The study population consisted of approximately 80% women (129/163) with a mean age of 33 years (SD 12) who were highly educated (130/163, 80% with >12 years of education) on average. Cross-classification of quartiles with the WFR placed 69% to 90% in the same/adjacent quartile for Meal-Q and 67% to 89% for MiniMeal-Q. Bland-Altman plots with the WFR and the questionnaires showed large variances and a trend of increasing underestimation with increasing intakes. Deattenuated and energy-adjusted Spearman rank correlations between the questionnaires and the WFR were in the range rho=.25-.69, excluding sodium that was not statistically significant. Cross-classifications of quartiles of the 2 Meal-Q administrations placed 86% to 97% in the same/adjacent quartile. Intraclass correlation coefficients for energy-adjusted intakes were in the range of .50-.76. Conclusions: With the exception of sodium, this validation study demonstrates Meal-Q and MiniMeal-Q to be useful methods for ranking micronutrient and fiber intake in epidemiological studies with Web-based data collection.
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| 5. |
- Christensen, S. E., et al.
(författare)
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Two New Meal- and Web-Based Interactive Food Frequency Questionnaires: Validation of Energy and Macronutrient Intake
- 2013
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Ingår i: Journal of Medical Internet Research. - : JMIR Publications Inc.. - 1438-8871. ; 15:6
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Tidskriftsartikel (refereegranskat)abstract
- Background: Meal-Q and its shorter version, MiniMeal-Q, are 2 new Web-based food frequency questionnaires. Their meal-based and interactive format was designed to promote ease of use and to minimize answering time, desirable improvements in large epidemiological studies. Objective: We evaluated the validity of energy and macronutrient intake assessed with Meal-Q and MiniMeal-Q as well as the reproducibility of Meal-Q. Methods: Healthy volunteers aged 20-63 years recruited from Stockholm County filled out the 174-item Meal-Q. The questionnaire was compared to 7-day weighed food records (WFR; n=163), for energy and macronutrient intake, and to doubly labeled water (DLW; n=39), for total energy expenditure. In addition, the 126-item MiniMeal-Q was evaluated in a simulated validation using truncated Meal-Q data. We also assessed the answering time and ease of use of both questionnaires. Results: Bland-Altman plots showed a varying bias within the intake range for all validity comparisons. Cross-classification of quartiles placed 70%-86% in the same/adjacent quartile with WFR and 77% with DLW. Deattenuated and energy-adjusted Pearson correlation coefficients with the WFR ranged from r=0.33-0.74 for macronutrients and was r=0.18 for energy. Correlations with DLW were r=0.42 for Meal-Q and r=0.38 for MiniMeal-Q. Intraclass correlations for Meal-Q ranged from r=0.57-0.90. Median answering time was 17 minutes for Meal-Q and 7 minutes for MiniMeal-Q, and participants rated both questionnaires as easy to use. Conclusions: Meal-Q and MiniMeal-Q are easy to use and have short answering times. The ranking agreement is good for most of the nutrients for both questionnaires and Meal-Q shows fair reproducibility.
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| 6. |
- Ciolfi Felice, Marianela, et al.
(författare)
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Analyzing User Reviews of the First Digital Contraceptive : Mixed Methods Study
- 2023
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Ingår i: Journal of Medical Internet Research. - : JMIR Publications Inc.. - 1438-8871. ; 25, s. e47131-
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: People in Western countries are increasingly rejecting hormone-based birth control and expressing a preference for hormone-free methods. Digital contraceptives have emerged as nonhormonal medical devices that make use of self-tracked data and algorithms to find a user's fertile window. However, there is little knowledge about how people experience this seemingly new form of contraception, whose failure may result in unwanted pregnancies, high health risks, and life-changing consequences. As digital contraception becomes more widely adopted, examining its user experience is crucial to inform the design of technologies that not only are medically effective but also meet users' preferences and needs. OBJECTIVE: We examined the user experience offered by Natural Cycles-the first digital contraceptive-through an analysis of app reviews written by its users worldwide. METHODS: We conducted a mixed methods analysis of 3265 publicly available reviews written in English by users of Natural Cycles on the Google Play Store. We combined computational and human techniques, namely, topic modeling and reflexive thematic analysis. RESULTS: For some users of digital contraception, the hormone-free aspect of the experience can be more salient than its digital aspect. Cultivating self-knowledge through the use of the technology can, in turn, feel empowering. Users also pointed to an algorithmic component that allows for increased accuracy over time as long as user diligence is applied. The interactivity of the digital contraceptive supports mutual learning and is experienced as agential and rewarding. Finally, a digital contraceptive can facilitate sharing the burden of contraceptive practices or highlight single-sided responsibilities while creating points of friction in the required daily routines. CONCLUSIONS: Digital contraception is experienced by users as a tamed natural approach-a natural method contained and regulated by science and technology. This means that users can experience a method based on a digital product as "natural," which positions digital contraceptives as a suitable option for people looking for evidence-based nonhormonal contraceptive methods. We point to interactivity as core to the user experience and highlight that a digital contraceptive might allow for collaboration between partners around contraceptive practices and responsibilities. We note that the user diligence required for the digital contraceptive to provide accurate and frequent data is sometimes not enough. Future research could look at designing (and redesigning) digital contraceptives with primary users and intimate partners, enhancing the experience of tamed naturalness; exploring how trust fluctuates among involved actors and in interactions with the technology; and, ultimately, designing more inclusive approaches to digital contraception.
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| 7. |
- Gaudenzi, Giulia, et al.
(författare)
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Point-of-Care Approaches for Meningitis Diagnosis in a Low-Resource Setting (Southwestern Uganda) : Observational Cohort Study Protocol of the "PI-POC" Trial
- 2020
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Ingår i: Journal of Medical Internet Research. - : JMIR Publications Inc.. - 1438-8871. ; 22:11
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Tidskriftsartikel (refereegranskat)abstract
- Background: A timely differential diagnostic is essential to identify the etiology of central nervous system (CNS) infections in children, in order to facilitate targeted treatment, manage patients, and improve clinical outcome. Objective: The Pediatric Infection-Point-of-Care (PI-POC) trial is investigating novel methods to improve and strengthen the differential diagnostics of suspected childhood CNS infections in low-income health systems such as those in Southwestern Uganda. This will be achieved by evaluating (1) a novel DNA-based diagnostic assay for CNS infections, (2) a commercially available multiplex PCR-based meningitis/encephalitis (ME) panel for clinical use in a facility-limited laboratory setting, (3) proteomics profiling of blood from children with severe CNS infection as compared to outpatient controls with fever yet not severely ill, and (4) Myxovirus resistance protein A (MxA) as a biomarker in blood for viral CNS infection. Further changes in the etiology of childhood CNS infections after the introduction of the pneumococcal conjugate vaccine against Streptococcus pneumoniae will be investigated. In addition, the carriage and invasive rate of Neisseria meningitidis will be recorded and serotyped, and the expression of its major virulence factor (polysaccharide capsule) will be investigated. Methods: The PI-POC trial is a prospective observational study of children including newborns up to 12 years of age with clinical features of CNS infection, and age-/sex-matched outpatient controls with fever yet not severely ill. Participants are recruited at 2 Pediatric clinics in Mbarara, Uganda. Cerebrospinal fluid (for cases only), blood, and nasopharyngeal (NP) swabs (for both cases and controls) sampled at both clinics are analyzed at the Epicentre Research Laboratory through gold-standard methods for CNS infection diagnosis (microscopy, biochemistry, and culture) and a commercially available ME panel for multiplex PCR analyses of the cerebrospinal fluid. An additional blood sample from cases is collected on day 3 after admission. After initial clinical analyses in Mbarara, samples will be transported to Stockholm, Sweden for (1) validation analyses of a novel nucleic acid-based POC test, (2) biomarker research, and (3) serotyping and molecular characterization of S. pneumoniae and N. meningitidis. Results: A pilot study was performed from January to April 2019. The PI-POC trial enrollment of patients begun in April 2019 and will continue until September 2020, to include up to 300 cases and controls. Preliminary results from the PI-POC study are expected by the end of 2020. Conclusions: The findings from the PI-POC study can potentially facilitate rapid etiological diagnosis of CNS infections in low-resource settings and allow for novel methods for determination of the severity of CNS infection in such environment.
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| 8. |
- Gaupp-Berghausen, M, et al.
(författare)
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Evaluation of different recruitment methods: Longitudinal, web-based, pan-european physical activity through sustainable transport approaches (PASTA) project
- 2019
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Ingår i: Journal of Medical Internet Research. - : JMIR Publications Inc.. - 1438-8871. ; 21:5, s. e11492-
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Tidskriftsartikel (refereegranskat)abstract
- Background: Sufficient sample size and minimal sample bias are core requirements for empirical data analyses. Combining opportunistic recruitment with a Web-based survey and data-collection platform yields new benefits over traditional recruitment approaches. Objective: This paper aims to report the success of different recruitment methods and obtain data on participants' characteristics, participation behavior, recruitment rates, and representativeness of the sample. Methods: A longitudinal, Web-based survey was implemented as part of the European PASTA (Physical Activity through Sustainable Transport Approaches) project, between November 2014 and December 2016. During this period, participants were recruited from 7 European cities on a rolling basis. A standardized guide on recruitment strategy was developed for all cities, to reach a sufficient number of adult participants. To make use of the strengths and minimize weakness, a combination of different opportunistic recruitment methods was applied. In addition, the random sampling approach was applied in the city of Örebro. To reduce the attrition rate and improve real-time monitoring, the Web-based platform featured a participant's and a researchers' user interface and dashboard. Results: Overall, 10,691 participants were recruited; most people found out about the survey through their workplace or employer (2300/10691, 21.51%), outreach promotion (2219/10691, 20.76%), and social media (1859/10691, 17.39%). The average number of questionnaires filled in per participant varied significantly between the cities (P<.001), with the highest number in Zurich (11.0, SE 0.33) and the lowest in Örebro (4.8, SE 0.17). Collaboration with local organizations, the use of Facebook and mailing lists, and direct street recruitment were the most effective approaches in reaching a high share of participants.
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| 9. |
- Grünloh, Christiane, et al.
(författare)
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"The Record is Our Work Tool!"-Physicians' Framing of a Patient Portal in Sweden
- 2016
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Ingår i: Journal of Medical Internet Research. - Toronto : JMIR Publications Inc.. - 1438-8871. ; 18:6, s. 470-483
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Tidskriftsartikel (refereegranskat)abstract
- Background: Uppsala County in Sweden launched an e-health patient portal named Journalen in 2012, which allows patients to access their medical records over the Internet. However, the launch of Journalen was critically debated in the media. The professionals were strongly skeptical and one reason was possible negative effects on their work environment. This study hence investigates the assumptions and perspectives of physicians in order to understand their framing of the patient portal in relation to their work environment.Objective: The study uses the concept of Technological Frames to examine how physicians in different specialties make sense of the patient portal in relation to their work environment.Methods: 12 semi-structured interviews were conducted with physicians from different specialties. Interviews were transcribed and translated. A theoretically informed thematic analysis was performed.Results: The thematic analysis revealed four main themes: work tool, process, workload, and control. Physicians perceive medical records as their work tool, written for communication within healthcare only. Considering effects on work environment the physicians held a negative attitude and expected changes, which would affect their work processes in a negative way. Especially that patients might read their test results prior to the physician was seen as possibly harmful for patients and as an interference with their established work practices. They expected the occurrence of misunderstandings and needs for additional explanations, which would consequently increase their workload. Other perceptions were that the portal would increase controlling and monitoring of physicians, and increase or create a feeling of mistrust from patients. Regarding benefits for the patients most of the physicians believe there is only little value in the patient portal and that patients would mostly be worried and misunderstand the information provided.Conclusions: Supported by the study we conclude: 1) The transfer of a paper-based healthcare process where patients read on paper, into a digital process challenges current work practices and has consequences for the work environment. Mostly this is explained by the changing positions between the physicians and the patient: the latter can drive the process, which reduces the physicians’ ability to guide the patient. 2) The physicians’ experiences were expressed as worries: patients would not understand the content of the record and become unnecessary anxious from misunderstandings. The concerns are to some extent based on a generalized view of patients, which might disregard those, who already actively participate in healthcare. This study hence reveals a need to provide physicians with information about the values for patients from using patient portals. 3) A change of work practices may be beneficial to increase patient participation, but such changes should preferably be designed and discussed with physicians. However, the strong resistance from the physicians made this challenging when launching Journalen.
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| 10. |
- Grünloh, Christiane, 1980-, et al.
(författare)
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"why do they need to check me?" patient participation through ehealth and the doctor-patient relationship : Qualitative study
- 2018
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Ingår i: Journal of Medical Internet Research. - : J M I R Publications, Inc.. - 1438-8871. ; 20:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: Roles in the doctor-patient relationship are changing and patient participation in health care is increasingly emphasized. Electronic health (eHealth) services such as patient accessible electronic health records (PAEHRs) have been implemented to support patient participation. Little is known about practical use of PAEHR and its effect on roles of doctors and patients. Objective: This qualitative study aimed to investigate how physicians view the idea of patient participation, in particular in relation to the PAEHR system. Hereby, the paper aims to contribute to a deeper understanding of physicians' constructions of PAEHR, roles in the doctor-patient relationship, and levels and limits of involvement. Methods: A total of 12 semistructured interviews were conducted with physicians in different fields. Interviews were transcribed, translated, and a theoretically informed thematic analysis was performed. Results: Two important aspects were identified that are related to the doctor-patient relationship: roles and involvement. The physicians viewed their role as being the ones to take on the responsibility, determining treatment options, and to be someone who should be trusted. In relation to the patient's role, lack of skills (technical or regarding medical jargon), motives to read, and patients' characteristics were aspects identified in the interviews. Patients were often referred to as static entities disregarding their potential to develop skills and knowledge over time. Involvement captures aspects that support or hinder patients to take an active role in their care. Conclusions: Literature of at least two decades suggests an overall agreement that the paternalistic approach in health care is inappropriate, and a collaborative process with patients should be adopted. Although the physicians in this study stated that they, in principle, were in favor of patient participation, the analysis found little support in their descriptions of their daily practice that participation is actualized. As seen from the results, paternalistic practices are still present, even if professionals might not be aware of this. This can create a conflict between patients who strive to become more informed and their questions being interpreted as signs of critique and mistrust toward the physician. We thus believe that the full potential of PAEHRs is not reached yet and argue that the concept of patient empowerment is problematic as it triggers an interpretation of "power" in health care as a zero-sum, which is not helpful for the maintenance of the relationship between the actors. Patient involvement is often discussed merely in relation to decision making; however, this study emphasizes the need to include also sensemaking and learning activities. This would provide an alternative understanding of patients asking questions, not in terms of "monitoring the doctor" but to make sense of the situation.
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