Parkinson's disease patients' needs during the COVID-19 pandemic in a red zone: A framework analysis of open-ended survey questions.
Ontology highlight
ABSTRACT: Background and purpose
During the first phase of the COVID-19 pandemic, a lockdown was imposed in Italy. The aim of this study was to investigate the perceptions, feelings and unmet needs of Parkinson's disease (PD) patients who experienced the 2-month lockdown in a "red zone" in the northern part of Italy during the COVID-19 outbreak.Methods
The study had a descriptive design that used a cross-sectional online survey which included open-ended questions to elicit responses on the participant's feelings concerning their risk of contracting coronavirus, how their physical activity had changed, and their personal needs, dictated by their condition, which were not met in this pandemic period as compared to previous periods. Demographic data were analysed using descriptive frequencies, while the open-ended questions were analysed using thematic framework analysis.Results
The study included 103 participants (63 men/40 women [61.17 vs. 38.83%]). Framework analysis led to the identification of four main themes: (i) fearing the risk of contracting coronavirus; (ii) reduction of physical activity; (iii) perception of the risk of not being able to access outpatient clinics or support services; and (iv) negative experiences of the important reduction in socialization. The perceptions of unmet needs appeared to be greater than the actual experience, particularly for the reduction in physical activity and the interruption of contacts with the neurologist and other specialists.Conclusions
This study highlights how perceptions and actual experience shape the meaning of living with PD during the pandemic. Worth noting is the divergence between perceptions and real impact in some aspects of the COVID-19 outbreak.
SUBMITTER: Cavallieri F
PROVIDER: S-EPMC8014253 | biostudies-literature |
REPOSITORIES: biostudies-literature
Similar Datasets
Project description:Sample size determination for open-ended questions or qualitative interviews relies primarily on custom and finding the point where little new information is obtained (thematic saturation). Here, we propose and test a refined definition of saturation as obtaining the most salient items in a set of qualitative interviews (where items can be material things or concepts, depending on the topic of study) rather than attempting to obtain all the items. Salient items have higher prevalence and are more culturally important. To do this, we explore saturation, salience, sample size, and domain size in 28 sets of interviews in which respondents were asked to list all the things they could think of in one of 18 topical domains. The domains-like kinds of fruits (highly bounded) and things that mothers do (unbounded)-varied greatly in size. The datasets comprise 20-99 interviews each (1,147 total interviews). When saturation was defined as the point where less than one new item per person would be expected, the median sample size for reaching saturation was 75 (range = 15-194). Thematic saturation was, as expected, related to domain size. It was also related to the amount of information contributed by each respondent but, unexpectedly, was reached more quickly when respondents contributed less information. In contrast, a greater amount of information per person increased the retrieval of salient items. Even small samples (n = 10) produced 95% of the most salient ideas with exhaustive listing, but only 53% of those items were captured with limited responses per person (three). For most domains, item salience appeared to be a more useful concept for thinking about sample size adequacy than finding the point of thematic saturation. Thus, we advance the concept of saturation in salience and emphasize probing to increase the amount of information collected per respondent to increase sample efficiency.
| S-EPMC6010234 | biostudies-literature
Project description:The primary method by which social scientists describe public opinion about science and technology is to present frequencies from fixed response survey questions and to use multivariate statistical models to predict where different groups stand with regard to perceptions of risk and benefit. Such an approach requires measures of individual preference which can be aligned numerically in an ordinal or, preferably, a continuous manner along an underlying evaluative dimension - generally the standard 5- or 7-point attitude question. The key concern motivating the present paper is that, due to the low salience and "difficult" nature of science for members of the general public, it may not be sensible to require respondents to choose from amongst a small and predefined set of evaluative response categories. Here, we pursue a different methodological approach: the analysis of textual responses to "open-ended" questions, in which respondents are asked to state, in their own words, what they understand by the term "DNA." To this textual data we apply the statistical clustering procedures encoded in the Alceste software package to detect and classify underlying discourse and narrative structures. We then examine the extent to which the classifications, thus derived, can aid our understanding of how the public develop and use "everyday" images of, and talk about, biomedicine to structure their evaluations of emerging technologies.
| S-EPMC4400270 | biostudies-other
Project description:BackgroundPatient satisfaction with in-person medical visits includes patient-clinician engagement. However, communication, empathy, and other relationship-centered care measures in virtual visits have not been adequately investigated.ObjectiveThis study aims to comprehensively consider patient experience, including relationship-centered care measures, to assess patient satisfaction during virtual visits.MethodsWe conducted a large survey study with open-ended questions to comprehensively assess patients' experiences with virtual visits in a diverse patient population. Adults with a virtual visit between June 21, 2017, and July 12, 2017, were invited to complete a survey of 21 Likert-scale items and textboxes for comments following their visit. Factor analysis of the survey items revealed three factors: experience with technology, patient-clinician engagement, and overall satisfaction. Multivariable logistic regression was used to test the associations among the three factors and patient demographics, clinician type, and prior relationship with the clinician. Using qualitative framework analysis, we identified recurrent themes in survey comments, quantitatively coded comments, and computed descriptive statistics of the coded comments.ResultsA total of 65.7% (426/648) of the patients completed the survey; 64.1% (273/426) of the respondents were women, and the average age was 46 (range 18-86) years. The sample was geographically diverse: 70.2% (299/426) from Ohio, 6.8% (29/426) from Florida, 4.2% (18/426) from Pennsylvania, and 18.7% (80/426) from other states. With regard to insurance coverage, 57.5% (245/426) were undetermined, 23.7% (101/426) had the hospital's employee health insurance, and 18.7% (80/426) had other private insurance. Types of virtual visits and clinicians varied. Overall, 58.4% (249/426) of patients had an on-demand visit, whereas 41.5% (177/426) had a scheduled visit. A total of 41.8% (178/426) of patients had a virtual visit with a family physician, 20.9% (89/426) with an advanced practice provider, and the rest had a visit with a specialist. Most patients (393/423, 92.9%) agreed that their virtual visit clinician was interested in them as a person, and their virtual visit made it easy to get the care they needed (383/421, 90.9%). A total of 81.9% (344/420) of respondents agreed or strongly agreed that their virtual visit was as good as an in-person visit by a clinician. Having a prior relationship with their virtual visit clinician was associated with less comfort and ease with virtual technology among patients (odds ratio 0.58, 95% CI 0.35-0.98). In terms of technology, patients found the interface easy to use (392/423, 92.7%) and felt comfortable using it (401/423, 94.8%). Technical difficulties were associated with lower odds of overall satisfaction (odds ratio 0.46, 95% CI 0.28-0.76).ConclusionsPatient-clinician engagement in virtual visits was comparable with in-person visits. This study supports the value and acceptance of virtual visits. Evaluations of virtual visits should include assessments of technology and patient-clinician engagement, as both are likely to influence patient satisfaction.
| S-EPMC8277398 | biostudies-literature
Project description:IntroductionIdentifying stakeholders' needs is crucial to informing decisions and policy development. This study aims to identify healthcare and social-related needs and effective strategies associated with COVID-19 from the first-person perspectives of patients and healthcare providers.MethodsCross-sectional online survey design including qualitative open-ended questions, conducted in primary care and hospital settings across Spain, with 12 out of 19 regions represented. Adults aged 18 years and older, who (a) resided in Spain and had a history of COVID-19 or (b) worked as healthcare providers delivering direct or indirect care for people with COVID-19 in Spanish primary care or hospitals during 2020 were eligible to participate. Recruitment was conducted via social-media networks (Twitter, LinkedIn, and WhatsApp) and communication channels of key organizations including patient and professional associations and groups. A total of 182 people were invited to complete the surveys and 76 people completed the surveys (71% women), of which 33 were home-isolated patients, 14 were hospitalized patients, 16 were primary care professionals, and 13 were hospital care professionals.ResultsA total of 327 needs and 86 effective strategies and positive aspects were identified across surveys and classified into the following overarching themes: (i) Accessibility, (ii) Basic needs, (iii) Clinical care, (iv) Person-and-family centered care, (v) Caring for the healthcare professional, (vi) Protocolization, information, health campaigns, and education, (vii) Resource availability, (viii) and Organizational needs/strategies.DiscussionFindings indicate the Spanish health and social care systems were generally unprepared to combat COVID-19. Implications for research, practice, and policy focus on integrating first-person perspectives as best practice to identify, prioritize and address needs to increase health and social care systems capacity and preparedness, as well as providing well-co-coordinated responses across government, healthcare, and non-government sectors to promote and protect the physical and mental health of all.
| S-EPMC10538718 | biostudies-literature
Project description:The COVID-19 pandemic is an unprecedented public health crisis with broad social and economic consequences. We conducted four surveys between April and August 2020 using the graph-based open-ended survey (GOS) framework, and investigated the most pressing concerns and issues for the general public in Japan. The GOS framework is a hybrid of the two traditional survey frameworks that allows respondents to post their opinions in a free-format style, which can subsequently serve as one of the choice items for other respondents, just as in a multiple-choice survey. As a result, this framework generates an opinion graph that relates opinions and respondents. We can also construct annotated opinion graphs to achieve a higher resolution. By clustering the annotated opinion graphs, we revealed the characteristic evolution of the response patterns as well as the interconnectedness and multi-faceted nature of opinions. Substantively, our notable finding is that "social pressure," not "infection risk," was one of the major concerns of our respondents. Social pressure refers to criticism and discrimination that they anticipate receiving from others should they contract COVID-19. It is possible that the collectivist nature of Japanese culture coupled with the government's policy of relying on personal responsibility to combat COVID-19 explains some of the above findings, as the latter has led to the emergence of vigilantes. The presence of mutual surveillance can contribute to growing skepticism toward others as well as fear of ostracism, which may have negative consequences at both the societal and individual levels.
| S-EPMC8362959 | biostudies-literature
Project description:Motives for migration are difficult to measure. Open-ended data collection can be an attractive option, but also comes with pitfalls. We use the "Motives for Migration" survey on internal migration in Sweden to identify some of these pitfalls. We identify five categories of methodological issues: how the respondents-and we-dealt with multiple motives for migration; who the motive pertained to (i.e., the respondents themselves or someone else in the household); whether the motive was related to a status or an event; which third-party person(s) the respondent meant to refer to; and which geographical unit the motive pertained to. We also identify two conceptual issues: (1) the distinction between reasons for moving and location choice and (2) the distinction between moving "from" and moving "to" somewhere. We present some suggestions that will be useful for future attempts to study the topic and possibly such other topics as motives for immigration, getting married, or leaving the parental home.
| S-EPMC8459254 | biostudies-literature
Project description:ObjectivesTo investigate differences in reported open defecation between a question about latrine use or open defecation for every household member and a household-level question.SettingRural India is home to most of the world's open defecation. India's Demographic and Health Survey (DHS) 2015-2016 estimates that 54% of households in rural India defecate in the open. This measure is based on a question asking about the behaviour of all household members in one question. Yet, studies in rural India find substantial open defecation among individuals living in households with latrines, suggesting that household-level questions underestimate true open defecation.ParticipantsIn 2018, we randomly assigned latrine-owning households in rural parts of four Indian states to receive one of two survey modules measuring sanitation behaviour. 1215 households were asked about latrine use or open defecation individually for every household member. 1216 households were asked the household-level question used in India's DHS: what type of facility do members of the household usually use?ResultsWe compare reported open defecation between households asked the individual-level questions and those asked the household-level question. Using two methods for comparing open defecation by question type, the individual-level question found 20-21 (95% CI 16 to 25 for both estimates) percentage points more open defecation than the household-level question, among all households, and 28-29 (95% CI 22 to 35 for both estimates) percentage points more open defecation among households that received assistance to construct their latrines.ConclusionsWe provide the first evidence that individual-level questions find more open defecation than household-level questions. Because reducing open defecation in India is essential to meeting the Sustainable Development Goals, and exposure to open defecation has consequences for child mortality and development, it is essential to accurately monitor its progress.Trial registration numberRegistry for International Development Impact Evaluations (5b55458ca54d1).
| S-EPMC6773353 | biostudies-literature
Project description:BackgroundChanging population demographics and technology developments have resulted in growing interest in the potential of consumer-facing digital health. In the United Kingdom, a £37 million (US $49 million) national digital health program delivering assisted living lifestyles at scale (dallas) aimed to deploy such technologies at scale. However, little is known about how consumers value such digital health opportunities.ObjectiveThis study explored consumers' perspectives on the potential value of digital health technologies, particularly mobile health (mHealth), to promote well-being by examining their willingness-to-pay (WTP) for such health solutions.MethodsA contingent valuation study involving a UK-wide survey that asked participants to report open-ended absolute and marginal WTP or willingness-to-accept for the gain or loss of a hypothetical mHealth app, Healthy Connections.ResultsA UK-representative cohort (n=1697) and a dallas-like (representative of dallas intervention communities) cohort (n=305) were surveyed. Positive absolute and marginal WTP valuations of the app were identified across both cohorts (absolute WTP: UK-representative cohort £196 or US $258 and dallas-like cohort £162 or US $214; marginal WTP: UK-representative cohort £160 or US $211 and dallas-like cohort £151 or US $199). Among both cohorts, there was a high prevalence of zeros for both the absolute WTP (UK-representative cohort: 467/1697, 27.52% and dallas-like cohort: 95/305, 31.15%) and marginal WTP (UK-representative cohort: 487/1697, 28.70% and dallas-like cohort: 99/305, 32.5%). In both cohorts, better general health, previous amount spent on health apps (UK-representative cohort 0.64, 95% CI 0.27 to 1.01; dallas-like cohort: 1.27, 95% CI 0.32 to 2.23), and age had a significant (P>.00) association with WTP (UK-representative cohort: -0.1, 95% CI -0.02 to -0.01; dallas-like cohort: -0.02, 95% CI -0.03 to -0.01), with younger participants willing to pay more for the app. In the UK-representative cohort, as expected, higher WTP was positively associated with income up to £30,000 or US $39,642 (0.21, 95% CI 0.14 to 0.4) and increased spending on existing phone and internet services (0.52, 95% CI 0.30 to 0.74). The amount spent on existing health apps was shown to be a positive indicator of WTP across cohorts, although the effect was marginal (UK-representative cohort 0.01, 95% CI 0.01 to 0.01; dallas-like cohort 0.01, 95% CI 0.01 to 0.02).ConclusionsThis study demonstrates that consumers value mHealth solutions that promote well-being, social connectivity, and health care control, but it is not universally embraced. For mHealth to achieve its potential, apps need to be tailored to user accessibility and health needs, and more understanding of what hinders frequent users of digital technologies and those with long-term conditions is required. This novel application of WTP in a digital health context demonstrates an economic argument for investing in upskilling the population to promote access and expedite uptake and utilization of such digital health and well-being apps.
| S-EPMC6354197 | biostudies-literature
Project description:PurposeSince 2010, a comprehensive symptom/problem (S/P) assessment has been carried out in Danish specialist palliative care using the EORTC QLQ-C15-PAL questionnaire and the open-ended "Write In three Symptoms/Problems" (WISP) instrument. On WISP patients can report up to three S/Ps not included in the EORTC QLQ-C15-PAL. However, little is known about which S/Ps patients with non-cancer diseases report using WISP. Therefore, we investigated the prevalence and severity of S/Ps reported on WISP by non-cancer patients in specialist palliative care and compared these S/Ps with those previously reported by cancer patients.MethodsThis register-based study collected data from the Danish Palliative Care Database. We included adult patients with non-cancer diseases answering the EORTC QLQ-C15-PAL at admittance to specialist palliative care between 2016 and 2021. WISP responses were qualitatively categorized, and their prevalence and severity calculated.ResultsOf the 2323 patients with non-cancer diseases answering the EORTC QLQ-C15-PAL, 812 (34.9%) reported at least one S/P using WISP. A total of 1340 S/Ps were reported on WISP, of which 56.7% were not included in the EORTC QLQ-C15-PAL (i.e., were new). Edema, existential problems, dizziness, cough, and dysphagia were the most prevalent new S/Ps. Overall, 88.7% of the S/Ps were scored as moderate-severe. The prevalence of S/Ps reported on WISP did not significantly differ between cancer and non-cancer patients, except for existential problems, dysphagia, myoclonus, speaking problems, sweats, and vomiting.ConclusionThe similarities and differences in the prevalence of the most common S/Ps reported on WISP confirm that WISP improves symptom assessment regardless of patient diagnosis.
| S-EPMC10837258 | biostudies-literature
Project description:Adaptive therapy is a dynamic cancer treatment protocol that updates (or 'adapts') treatment decisions in anticipation of evolving tumor dynamics. This broad term encompasses many possible dynamic treatment protocols of patient-specific dose modulation or dose timing. Adaptive therapy maintains high levels of tumor burden to benefit from the competitive suppression of treatment-sensitive subpopulations on treatment-resistant subpopulations. This evolution-based approach to cancer treatment has been integrated into several ongoing or planned clinical trials, including treatment of metastatic castrate resistant prostate cancer, ovarian cancer, and BRAF-mutant melanoma. In the previous few decades, experimental and clinical investigation of adaptive therapy has progressed synergistically with mathematical and computational modeling. In this work, we discuss 11 open questions in cancer adaptive therapy mathematical modeling. The questions are split into three sections: (1) integrating the appropriate components into mathematical models (2) design and validation of dosing protocols, and (3) challenges and opportunities in clinical translation.
| S-EPMC10036119 | biostudies-literature