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1.
BMC Public Health ; 24(1): 33, 2024 01 02.
Artigo em Inglês | MEDLINE | ID: mdl-38166875

RESUMO

BACKGROUND: Violence against women (VAW) research is a sensitive topic, which has been conducted mainly using face-to-face methods. The COVID-19 pandemic lockdown and restrictions on movement presented an opportunity to conduct VAW research using remote methods. We discuss how we adapted methods, reflect on lessons learned, and make recommendations highlighting key considerations when conducting remote research on a sensitive topic of VAW. METHODS: We designed and conducted an exploratory qualitative study using remote methods with 18 men and 19 women, aged 18 years and older, who lived with their partner or spouse during lockdown in South Africa. The aim of the study was to explore experiences of COVID-19 lockdown, and its link to women and children's experiences of violence in the homes. Data presented in this paper draws from researchers' reflections drawn from debriefing sessions during the research process, and from participants' interview transcripts. FINDINGS: Remote recruitment of participants took longer than anticipated, and we had to re-advertise the study. We could not ensure safety and privacy during interviews. Regardless of all the safety and privacy measures we put in place during the research process, some participants had an adult person present in the room during interviews, and the researchers had no control over interruptions. Rapport was difficult to establish without an in-person connection, which limited disclosure about violence experience (amongst women) and perpetration (amongst men). CONCLUSIONS: Given the methodological and ethical challenges which limited disclosure of VAW remotely, we conclude that telephone interviews used in our study impacted on the quality of study data. Therefore, we do not recommend VAW research to be conducted remotely, unless it is essential and participants are already known to the interviewer and trust has been established.


Assuntos
COVID-19 , Violência por Parceiro Íntimo , Adulto , Masculino , Criança , Humanos , Feminino , África do Sul/epidemiologia , Pandemias , Controle de Doenças Transmissíveis , Violência , Pesquisa Qualitativa
2.
Sensors (Basel) ; 23(9)2023 May 08.
Artigo em Inglês | MEDLINE | ID: mdl-37177775

RESUMO

The main question of this paper is what factors influence willingness to participate in a smartphone-application-based data collection where participants both fill out a questionnaire and let the app collect data on their smartphone usage. Passive digital data collection is becoming more common, but it is still a new form of data collection. Due to the novelty factor, it is important to investigate how willingness to participate in such studies is influenced by both socio-economic variables and smartphone usage behaviour. We estimate multilevel models based on a survey experiment with vignettes for different characteristics of data collection (e.g., different incentives, duration of the study). Our results show that of the socio-demographic variables, age has the largest influence, with younger age groups having a higher willingness to participate than older ones. Smartphone use also has an impact on participation. Advanced users are more likely to participate, while users who only use the basic functions of their device are less likely to participate than those who use it mainly for social media. Finally, the explorative analysis with interaction terms between levels has shown that the circumstances of data collection matter differently for different social groups. These findings provide important clues on how to fine-tune circumstances to improve participation rates in this novel passive digital data collection.


Assuntos
Aplicativos Móveis , Smartphone , Humanos , Grupo Social , Inquéritos e Questionários , Motivação
3.
Arch Phys Med Rehabil ; 103(8): 1684-1692, 2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-35307343

RESUMO

Conducting high-quality clinical research is dependent on merging scientific rigor with the clinical environment. This is often a complex endeavor that may include numerous barriers and competing interests. Overcoming these challenges and successfully integrating clinical research programs into clinical practice settings serving rehabilitation outpatients is beneficial from both a logistical perspective (eg, supports efficient and successful research procedures) and the establishment of a truly patient-centered research approach. Leveraging our experience with navigating this research-clinical care relationship, this article (1) proposes the Patient-Centered Framework for Rehabilitation Research, a model for integrating patient-centered research in an outpatient clinical setting that incorporates a collaborative, team-based model encompassing patient-centered values, as well as strategies for recruitment and retention, with a focus on populations living with disabilities or chronic diseases; (2) describes application of this framework in a comprehensive specialty multiple sclerosis center with both general strategies and specific examples to guide adaptation and implementation in other settings; and (3) discusses the effect of the framework as a model in 1 center, as well as the need for additional investigation and adaptation for other populations. The 5 interconnected principles incorporated in the Framework and which prioritize patient-centeredness include identifying shared values, partnering with the clinical setting, engaging with the population, building relationships with individuals, and designing accessible procedures. The Patient-Centered Framework for Rehabilitation Research is a model presented as an adaptable roadmap to guide researchers in hopes of not only improving individual patients' experiences but also the quality and relevance of rehabilitation research as a whole. Future investigation is needed to test the Framework in other settings.


Assuntos
Pessoas com Deficiência , Pacientes Ambulatoriais , Doença Crônica , Humanos , Assistência Centrada no Paciente , Pesquisa de Reabilitação
4.
Worldviews Evid Based Nurs ; 17(6): 448-456, 2020 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-33210818

RESUMO

BACKGROUND: Preterm and sick infants benefit from parent-infant closeness and family-centered care (FCC) in neonatal intensive care units (NICUs). Prospective and feasible tools are needed to measure these care practices to facilitate their implementation. AIMS: To describe the development process of three prospective data collection tools that measure parent-infant closeness and the quality of FCC. METHODS: Data collection tools were developed in an iterative process consisting of three development cycles. Feedback was gathered from parents, staff, and researchers. The first stages of development focused on the content validity, appropriate scaling, and optimization of the response rate of these tools. RESULTS: The study included parents of 490 infants and the nurses working at bedside in 15 NICUs in six countries. The Parent-Infant Closeness Diary was developed to measure the daily duration of parental presence, holding, and skin-to-skin contact. The optimal duration for daily diaries was 14 consecutive days to maintain a good response rate. Parents provided reliable documentation of parent-infant closeness. Digital FCC tools covering the nine aspects of FCC for parents and nurses were developed to measure the quality of FCC. Participants provided answers on a 7-point Likert scale. Parents' response rates remained >50% for approximately 1 month, and the nurses' mean response rate was 55% (39%-87%) for the 3-month study period. LINKING EVIDENCE TO ACTION: These new tools provide prospective daily information to aid the implementation of parent-infant closeness and the quality of FCC in NICU in different countries. They can be used to study and evaluate the implementation of these clinical practices NICUs in an international context.


Assuntos
Coleta de Dados/instrumentação , Relações Familiares/psicologia , Relações Pais-Filho , Coleta de Dados/métodos , Feminino , Humanos , Lactente , Recém-Nascido , Unidades de Terapia Intensiva Neonatal/organização & administração , Unidades de Terapia Intensiva Neonatal/tendências , Masculino , Poder Familiar/psicologia , Estudos Prospectivos , Psicometria/instrumentação , Psicometria/métodos
5.
Value Health ; 22(8): 845-850, 2019 08.
Artigo em Inglês | MEDLINE | ID: mdl-31426923

RESUMO

OBJECTIVE: This study examines the impact of data collection method on the sociodemographic and health profile of samples of people with diabetes who complete either an online or postal patient-reported outcome measure (PROM) validation survey. METHODS: A longitudinal survey of people with diabetes was conducted using online and postal survey versions. The survey consisted of sociodemographic and health questions, a health and self-management PROM (Health and Self-Management in Diabetes [HASMID]), and 5-level version of EQ-5D. Dose adjustment for normal eating Online, Diabetes UK, and social media were used to recruit online survey participants. A panel of patients at a local National Health Service Trust was randomly allocated to participate in either survey version (two-thirds to postal version). Participants were asked to complete the survey again approximately 3 months later. RESULTS: A total of 2784 participants completed the survey (1908 online, 876 postal). The samples (online versus postal) differed; the online sample was younger, with a larger proportion of women and respondents with type 1 diabetes. There were significant differences in sociodemographic characteristics by type of diabetes across data collection mode. The proportion of respondents who responded again at point 2 was higher in the postal sample (525 postal, 698 online). CONCLUSION: The sociodemographic and health profile of samples of people with diabetes differed depending on whether they completed the online or postal survey. Differences are likely due to different recruitment methods and differences in those choosing to respond to different survey versions. Future PROM validation surveys should select data collection methods carefully because these can affect sample characteristics and results.


Assuntos
Coleta de Dados/métodos , Diabetes Mellitus/epidemiologia , Nível de Saúde , Medidas de Resultados Relatados pelo Paciente , Fatores Socioeconômicos , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Coleta de Dados/normas , Diabetes Mellitus/terapia , Diabetes Mellitus Tipo 1/epidemiologia , Diabetes Mellitus Tipo 1/terapia , Diabetes Mellitus Tipo 2/epidemiologia , Dieta , Feminino , Humanos , Internet , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Serviços Postais , Qualidade de Vida , Autogestão , Fatores Sexuais , Medicina Estatal , Inquéritos e Questionários/normas , Reino Unido , Adulto Jovem
6.
J Urban Health ; 96(6): 912-922, 2019 12.
Artigo em Inglês | MEDLINE | ID: mdl-31350725

RESUMO

Community-based organizations (CBOs) are essential partners in community-engaged research, yet little is known about their research capacity. Community experts and organizations bring unique knowledge of the community to research partnerships, but standard validated measures of CBO research capacity do not yet exist. We report here on the refinement through a structured Delphi panel of a previously developed and piloted framework of CBO research capacity and an accompanying instrument, the Community REsearch Activity Assessment Tool (CREAT). A Delphi panel composed of twenty-three experts recruited from community (52%) and academic researchers (48%) from around the USA participated in five rounds of review to establish consensus regarding framework domains, operational definitions, and tool items. Panelists rated the importance of items on a 5-point Likert scale and assessed for the inclusion and language of items. Initial rounds of review began with reviewing the framework and definitions, with subsequent rounds including review of the full instrument. Concluding rounds brought back items that had not yet reached consensus for additional review. Median response values (MRV) and intra-quartile ranges (IQR) were calculated for each Likert item. Items with an MRV > 3.5 were deemed as having reached consensus and were retained. Language changes were made for items with MRV > 2.0 and < 3.5 and an IQR > 1.5. Items with MRV < 2.0 were excluded from the final tool. Panelist response rate was high (> 75%). Consensus was achieved for the inclusion of all domains, subdomains and operational definitions except "evidence-based practices." Extensive changes to the CREAT instrument were made for clarification, to provide additional detail and to ensure applicability for CBOs. The CREAT framework and tool was refined through input from community and academic researchers. Availability of a validated tool to assess research capacity of CBOs will support targeted research capacity building for community organizations and partners, thus strengthening collaborations.


Assuntos
Fortalecimento Institucional/estatística & dados numéricos , Fortalecimento Institucional/normas , Pesquisa Participativa Baseada na Comunidade/estatística & dados numéricos , Pesquisa Participativa Baseada na Comunidade/normas , Guias como Assunto , Técnica Delphi , Humanos , Projetos de Pesquisa
7.
Qual Life Res ; 28(3): 687-694, 2019 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-30478597

RESUMO

PURPOSE: The purpose of the study was to compare completeness, timeliness and cost of patient-reported outcome measures (PROMs) collection using telephone, email and post in men with prostate cancer. METHODS: A parallel, three-arm randomised controlled equivalence trial. 1168 patients were randomised to telephone (n = 295), postal (n = 388) and email (n = 385) arms. Participants were asked to provide self-reported responses for 26 items of Expanded Prostate Cancer Index Composite. Cost and resource data were collected from a provider perspective. RESULTS: Equivalence tests showed no difference in completeness in the three arms within a 10% equivalence margin. Men diagnosed in public hospitals were less likely to complete the survey compared to those in private hospitals, OR = 0.19 (95% CI 0.04-0.89) (p = 0.035). The email survey required significantly less time to complete than telephone and postal methods [median time of 2 min (IQR 1,8) vs. 7 min (IQR 6,9) vs. 10 min (IQR 9,12), respectively (p < 0.001)]. The incremental cost effectiveness ratio for email compared to telephone was AUD$1.90, cost-effective if users valued an additional 1% improvement in survey completion greater than AUD$1.90. CONCLUSION: Email method took less time and cost and should be used as the primary PROMs collection, with telephone if men without email or do not respond to email.


Assuntos
Medidas de Resultados Relatados pelo Paciente , Neoplasias da Próstata/diagnóstico , Qualidade de Vida/psicologia , Idoso , Coleta de Dados , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias da Próstata/patologia , Inquéritos e Questionários
8.
BMC Palliat Care ; 18(1): 35, 2019 Apr 05.
Artigo em Inglês | MEDLINE | ID: mdl-30953487

RESUMO

BACKGROUND: Accessible indicators of aggressiveness of care at the end-of-life are useful to monitor implementation of early integrated palliative care practice. To determine the intensity of end-of-life care from exhaustive data combining administrative databases and hospital clinical records, to evaluate its variability across hospital facilities and associations with timely introduction of palliative care (PC). METHODS: For this study designed as a decedent series nested in multicentre cohort of advanced cancer patients, we selected 997 decedents from a cohort of patients hospitalised in 2009-2010, with a diagnosis of metastatic cancer in 3 academic medical centres and 2 comprehensive cancer centres in the Paris area. Hospital data was combined with nationwide mortality databases. Complete data were collected and checked from clinical records, including first referral to PC, chemotherapy within 14 days of death, ≥1 intensive care unit (ICU) admission, ≥2 emergency department visits (ED), and ≥ 2 hospitalizations, all within 30 days of death. RESULTS: Overall (min-max) indicator values as reported by facility providing care rather than the place of death, were: 16% (8-25%) patients received chemotherapy within 14 days of death, 16% (6-32%) had ≥2 admissions to acute care, 6% (0-15%) had ≥2 emergency visits and 18% (4-35%) had ≥1 intensive care unit admission(s). Only 53% of these patients met the PC team, and the median (min-max) time between the first intervention of the PC team and death was 41 (17-112) days. The introduction of PC > 30 days before death was independently associated with lower intensity of care. CONCLUSIONS: Aggressiveness of end-of-life cancer care is highly variable across centres. This validates the use of indicators to monitor integrated PC in oncology. Disseminating a quality audit-feedback cycle should contribute to a shared view of appropriate end-of-life care objectives, and foster action for improvement among care providers.


Assuntos
Neoplasias/terapia , Assistência Terminal/normas , Idoso , Idoso de 80 Anos ou mais , Estudos de Coortes , Feminino , Humanos , Modelos Logísticos , Masculino , Pessoa de Meia-Idade , Neoplasias/psicologia , Paris , Pesquisa Qualitativa , Qualidade da Assistência à Saúde/normas , Estudos Retrospectivos , Assistência Terminal/métodos
9.
J Med Internet Res ; 21(7): e12980, 2019 07 30.
Artigo em Inglês | MEDLINE | ID: mdl-31364607

RESUMO

BACKGROUND: In recent years, there has been a proliferation of third-party Web-based services available to consumers to interpret raw DNA from direct-to-consumer genetic testing companies. Little is known about who uses these services and the downstream health implications. Identifying this hard-to-reach population of consumers for research raised questions about the most effective recruitment methods to undertake. Past studies have found that Web-based social media survey distribution can be cost-effective for targeting hard-to-reach populations, yet comparative efficacy information across platforms is limited. OBJECTIVE: The aim of this study was to identify the most effective Web-based strategies to identify and recruit the target population of direct-to-consumer genetic testing users who also made use of third-party interpretation services to analyze their raw genetic data. Web-based survey recruitment methods varying by social media platform and advertising method were compared in terms of cost-effectiveness and demographics of survey respondents. METHODS: A total of 5 Web-based survey distribution conditions were examined: 4 paid advertising services and 1 unpaid service. For the paid services, a 2x2 quasi-experimental design compared social media platforms (Facebook vs Twitter) and advertising tracking metrics (by click vs by conversion). The fifth unpaid comparison method consisted of study postings on the social media platform, Reddit, without any paid advertising. Links to identical Web-based versions of the study questionnaire were posted for 10 to 14 days for each of the distribution conditions, which allowed tracking the number of respondents that entered and completed the questionnaire by distribution condition. RESULTS: In total, 438 individuals were recruited to the study through all conditions. A nearly equivalent number of participants were recruited from paid campaigns on Facebook (n=159) and Twitter (n=167), with a smaller sample recruited on Reddit (n=112). Significantly more participants were recruited through conversion-tracking (n=222) than through click-tracking campaigns (n=104; Z=6.5, P<.001). Response rates were found to be partially driven by organic sharing of recruitment materials among social media users. Conversion tracking was more cost-effective than click tracking across paid social media platforms. Significant differences in terms of gender and age distributions were noted between the platforms and between the tracking metrics. CONCLUSIONS: Web-based recruitment methods were effective at recruiting participants from a hard-to-reach population in a short time frame. There were significant differences in the effectiveness of various paid advertising techniques. Recruitment through Web-based communities also appeared to perform adequately, yet it may be limited by the number of users accessible in open community groups. Future research should evaluate the impact of organic sharing of recruitment materials because this appeared to play a substantial role in the observed effectiveness of different methods.


Assuntos
DNA/química , Internet/normas , Mídias Sociais/normas , Adolescente , Adulto , Idoso , Algoritmos , Comportamento do Consumidor , Coleta de Dados , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Adulto Jovem
10.
Subst Abus ; 40(1): 116-123, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-29694301

RESUMO

Background: Nondisclosure of drug use on surveys is common, and many drug users unknowingly ingest adulterant or replacement drugs, which leads to underreporting of use of these drugs. Biological testing can complement survey research, and hair testing is an appealing method, as many drugs are detectable for months post-use. We examined willingness to donate a hair sample to be tested among those surveyed in a population at high risk for consuming adulterated drugs-electronic dance music (EDM) party attendees. Methods: We surveyed 933 adults entering EDM parties in New York City in 2017. Hair donation response rates and reasons for refusal were examined from this cross-sectional study. Results: A third (n = 312; 33.4%) provided a hair sample. Lack of interest (21.0%), lack of time (19.8%), not wanting a lock of hair cut (17.7%), and disinterest in having hair cut in public (13.8%) were the main reported reasons for refusal; 4.7% refused because they could not receive results. Past-year drug users were more likely to fear identification than nonusers (P < .001). Asian participants were at lower odds of providing a hair sample (adjusted odds ratio [aOR] = 0.53, 95% confidence interval [CI] = 0.32-0.87), and those reporting past-year use of LSD (aOR = 1.62, 95% CI = 1.11-2.35), opioids (nonmedical; aOR = 1.93, 95% CI = 1.25-2.99), and/or methamphetamine (aOR = 3.43, 95% CI = 1.36-8.62) were at higher odds of providing a sample than nonusers of these drugs. Conclusions: Only a third of participants provided a hair sample, and we found individual-level differences regarding willingness to provide a sample. Factors contributing to refusal should be considered to increase response rates and generalizability of results.


Assuntos
Comportamento Cooperativo , Cabelo/química , Atividades de Lazer/psicologia , Detecção do Abuso de Substâncias/métodos , Detecção do Abuso de Substâncias/psicologia , Adolescente , Adulto , Estudos Transversais , Usuários de Drogas/psicologia , Feminino , Humanos , Masculino , Adulto Jovem
11.
Nurs Inq ; 26(3): e12288, 2019 07.
Artigo em Inglês | MEDLINE | ID: mdl-30834658

RESUMO

Longitudinal qualitative research in nursing is rare but becoming more common. Data collection and analysis over time provide some intriguing possibilities to better understand processes, development, and change in illness experience, healthcare organizations, and self-management. This paper aims to present a process for analyzing qualitative longitudinal data material, namely the Pattern-Oriented Longitudinal Analysis approach (POLA). We developed this approach after synthesizing experiences from two longitudinal qualitative projects and comparing our procedures and reflections with the relevant literature. Using the POLA approach, researchers can describe complexity and variation in changes over time. During the analysis process, emphasis is put on visualizing and identifying change at both an individual and a group level. Ontological and epistemological assumptions for the approach are also described. The benefit of this approach is the possibility to describe complexity and diversity in processes over time, which is important for the development of nursing knowledge. The analysis approach can be further used and developed by researchers seeking to understand variance or contextual features in processes and changes over time.


Assuntos
Estudos Longitudinais , Pesquisa Qualitativa , Humanos , Mudança Social
12.
Public Health Nurs ; 35(4): 353-359, 2018 07.
Artigo em Inglês | MEDLINE | ID: mdl-29566271

RESUMO

OBJECTIVES: A community-academic team implemented a study involving collection of quantitative data using a computer-based audience response system (ARS) whereby community partners led data collection efforts. The team participated in a reflection exercise after the data collection to evaluate and identify best practices and lessons learned about the community partner-led process. DESIGN & SAMPLE: The methods involved a qualitative research consultant who facilitated the reflection exercise that consisted of two focus groups-one academic and one community research team members. The consultant then conducted content analysis. Nine members participated in the focus groups. RESULTS: The reflection identified the following themes: the positive aspects of the ARS; challenges to overcome; and recommendations for the future. CONCLUSION: The lessons learned here can help community-academic research partnerships identify the best circumstances in which to use ARS for data collection and practical steps to aid in its success.


Assuntos
Pesquisa Participativa Baseada na Comunidade/métodos , Coleta de Dados/métodos , Grupos Focais/métodos , Relações Comunidade-Instituição , Processamento Eletrônico de Dados/métodos , Exercício Físico , Humanos , Pesquisa Qualitativa
13.
Behav Res Methods ; 50(4): 1734-1748, 2018 08.
Artigo em Inglês | MEDLINE | ID: mdl-28842851

RESUMO

Building on the literature that approaches self-disclosure as a decision-making process, we proposed a self-reported Sensitive Information Disclosure (SID) measure and tested the measure's reliability and validity in two studies across a variety of interview modes and settings. We used theory to identify potential dimensions of sensitive information disclosures, created potential scale items, performed two separate card sorts, and validated the resulting pool of items in two separate experiments. Participants answered the SID scale items following an interview involving sensitive information, potential risk, and after-disclosure vulnerability. Study 1 was a laboratory experiment conducted with 165 university students. Exploratory factor analysis results revealed a two-factor structure, Personal Discomfort and Revealing Personal Information. Study 2 replicated these procedures using confirmatory factor analysis to confirm the factor structure and demonstrate the scale's reliability and validity, with a sample of 77 students and 275 participants from Amazon's M-Turk. Together, these results demonstrate that the proposed 11-item SID scale has good convergent and discriminant validity as well as good reliability. A quasi-experimental application of the measure is illustrated using the substantive findings from Study 2. This research fills a gap in the literature by developing a topic-free scale to measure SID as a dependent variable. The ability to accurately measure sensitive information disclosure is an important and necessary step toward developing a more thorough understanding of how people feel and react when asked to provide personal information in diverse interview settings.


Assuntos
Coleta de Dados/métodos , Autorrelato/normas , Revelação da Verdade , Adulto , Análise Fatorial , Feminino , Humanos , Masculino , Psicometria , Reprodutibilidade dos Testes , Inquéritos e Questionários , Adulto Jovem
14.
Prison J ; 98(2): 213-228, 2018 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-30078913

RESUMO

We explored the potentials of using three indirect methods including crosswise, proxy respondent method, and network scale-up (NSU) in comparison to direct questioning in collecting sensitive and socially stigmatized HIV-related risk behaviors information from prisoners (N=265). Participants reported more sexual contact in prison for their friends than they did for themselves (10.6% vs. 3.8% in men, 13.7% vs. 0% in women). In men, NSU provided lower estimates than direct questioning, while in women NSU estimates were higher. Different data collection methods provide different estimates, and collectively offer a more comprehensive picture of HIV-related risk behaviors in prisons.

15.
BMC Health Serv Res ; 17(1): 75, 2017 01 23.
Artigo em Inglês | MEDLINE | ID: mdl-28114981

RESUMO

BACKGROUND: Patient-reported outcome measures (PROMs) are used by clinical quality registries to assess patients' perspectives of care outcomes and quality of life. PROMs can be assessed through a self-administered survey or by a third party. Use of mixed mode approaches where PROMs are completed using a single or combination of administration method is emerging. The aim of this study is to identify the most cost-effective efficient approach to collecting PROMs among three modes (telephone, postal service/mail and email) in a population-based clinical quality registry monitoring survivorship after a diagnosis of prostate cancer. This is important to assist the registry in achieving representative PROMs capture using the most cost-effective technique and in developing cost projections for national scale-up. METHODS/DESIGN: This study will adopt an equivalence randomised controlled design. Participants are men diagnosed with and/or treated for prostate cancer (PCa) participating in PCOR-VIC and meet the criteria for 12-month follow-up. Participants will be individually randomized to three independent groups: telephone, mail/postal, or email to complete the 26-item Expanded Prostate Cancer Index Composite (EPIC-26) survey. It is estimated each group will have 229 respondents. We will compare the proportion of completed surveys across the three groups. The economic evaluation will be undertaken from the perspective of the data collection centre and consider all operating costs (personnel, supplies, training, operation and maintenance). Cost data will be captured using an Activity Based Costs method. To estimate the most cost-effective approach, we will calculate incremental cost-effectiveness ratios. A cost projection model will be developed based on most cost-effective approach for nationwide scale-up of the PROMs tool for follow-up of PCa patients in Australia. DISCUSSION: This study will identify the most cost-effective approach for collecting PROMs from men with PCa, and enable estimation of costs for national implementation of the PCa PROMs survey. The findings will be of interest to other registries embarking on PROMs data collection. TRIAL REGISTRATION: ACTRN12615001369516 (Registered on December 16, 2015).


Assuntos
Coleta de Dados/métodos , Medidas de Resultados Relatados pelo Paciente , Neoplasias da Próstata/terapia , Sistema de Registros , Análise Custo-Benefício , Registros Eletrônicos de Saúde , Humanos , Masculino , Registro Médico Coordenado , Qualidade de Vida , Vitória/epidemiologia
16.
J Med Internet Res ; 19(5): e140, 2017 05 05.
Artigo em Inglês | MEDLINE | ID: mdl-28476728

RESUMO

BACKGROUND: Given the growing interest in mobile data collection due to the proliferation of mobile phone ownership and network coverage in low- and middle-income countries (LMICs), we synthesized the evidence comparing estimates of health outcomes from multiple modes of data collection. In particular, we reviewed studies that compared a mode of remote data collection with at least one other mode of data collection to identify mode effects and areas for further research. OBJECTIVE: The study systematically reviewed and summarized the findings from articles and reports that compare a mode of remote data collection to at least one other mode. The aim of this synthesis was to assess the reliability and accuracy of results. METHODS: Seven online databases were systematically searched for primary and grey literature pertaining to remote data collection in LMICs. Remote data collection included interactive voice response (IVR), computer-assisted telephone interviews (CATI), short message service (SMS), self-administered questionnaires (SAQ), and Web surveys. Two authors of this study reviewed the abstracts to identify articles which met the primary inclusion criteria. These criteria required that the survey collected the data from the respondent via mobile phone or landline. Articles that met the primary screening criteria were read in full and were screened using secondary inclusion criteria. The four secondary inclusion criteria were that two or more modes of data collection were compared, at least one mode of data collection in the study was a mobile phone survey, the study had to be conducted in a LMIC, and finally, the study should include a health component. RESULTS: Of the 11,568 articles screened, 10 articles were included in this study. Seven distinct modes of remote data collection were identified: CATI, SMS (singular sitting and modular design), IVR, SAQ, and Web surveys (mobile phone and personal computer). CATI was the most frequent remote mode (n=5 articles). Of the three in-person modes (face-to-face [FTF], in-person SAQ, and in-person IVR), FTF was the most common (n=11) mode. The 10 articles made 25 mode comparisons, of which 12 comparisons were from a single article. Six of the 10 articles included sensitive questions. CONCLUSIONS: This literature review summarizes the existing research about remote data collection in LMICs. Due to both heterogeneity of outcomes and the limited number of comparisons, this literature review is best positioned to present the current evidence and knowledge gaps rather than attempt to draw conclusions. In order to advance the field of remote data collection, studies that employ standardized sampling methodologies and study designs are necessary to evaluate the potential for differences by survey modality.


Assuntos
Telefone Celular/estatística & dados numéricos , Envio de Mensagens de Texto , Coleta de Dados , Países em Desenvolvimento , Humanos , Reprodutibilidade dos Testes , Inquéritos e Questionários
17.
Appl Nurs Res ; 37: 50-54, 2017 10.
Artigo em Inglês | MEDLINE | ID: mdl-28985920

RESUMO

BACKGROUND: Despite an increasing use of qualitative email interviews by nurse researchers, there is little understanding about the appropriateness and equivalence of email interviews to other qualitative data collection methods, especially on sensitive topics research. PURPOSE: The purpose is to describe our procedures for completing asynchronous, email interviews and to evaluate the appropriateness and equivalency of email interviews to phone interviews in two qualitative research studies that examined reproductive decisions. METHODS: Content analysis guided the methodological appraisal of appropriateness and equivalency of in-depth, asynchronous email interviews to single phone interviews. Appropriateness was determined by: (a) participants' willingness to engage in email or phone interviews, (b) completing data collection in a timely period, and (c) participants' satisfaction with the interview. Equivalency was evaluated by: (a) completeness of the interview data, and (b) insight obtained from the data. RESULTS: Of the combined sample in the two studies (N=71), 31% of participants chose to participate via an email interview over a phone interview. The time needed to complete the email interviews averaged 27 to 28days and the number of investigator probe-participant response interchanges was 4 to 5cycles on average. In contrast, the phone interviews averaged 59 to 61min in duration. Most participants in both the email and phone interviews reported they were satisfied or very satisfied with their ability to express their true feelings throughout the interview. Regarding equivalence, 100% of the email and phone interviews provided insight into decision processes. Although insightful, two of the email and one phone interview had short answers or, at times, underdeveloped responses. Participants' quotes and behaviors cited within four published articles, a novel evaluation of equivalency, revealed that 20% to 37.5% of the citations about decision processes were from email participants, which is consistent with the percent of email participants. CONCLUSIONS: In-depth, asynchronous email interviews were appropriate and garnered rich, insightful data that augmented the phone interviews. Awareness of the procedures, appropriateness, and nuances when carrying out email interviews on sensitive topics may provide nurse researchers with the ability to obtain thick, rich data that can best advance clinical practice and direct future research.


Assuntos
Tomada de Decisões , Correio Eletrônico , Entrevistas como Assunto , Reprodução , Feminino , Humanos , Masculino , Pesquisa Qualitativa
18.
Environ Monit Assess ; 189(7): 360, 2017 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-28660542

RESUMO

Periphyton is an important component of stream bioassessment, yet methods for quantifying periphyton biomass can differ substantially. A case study within the Arkansas Ozarks is presented to demonstrate the potential for linking chlorophyll-a (chl-a) and ash-free dry mass (AFDM) data sets amassed using two frequently used periphyton sampling protocols. Method A involved collecting periphyton from a known area on the top surface of variably sized rocks gathered from relatively swift-velocity riffles without discerning canopy cover. Method B involved collecting periphyton from the entire top surface of cobbles systematically gathered from riffle-run habitat where canopy cover was intentionally avoided. Chl-a and AFDM measurements were not different between methods (p = 0.123 and p = 0.550, respectively), and there was no interaction between method and time in the repeated measures structure of the study. However, significantly different seasonal distinctions were observed for chl-a and AFDM from all streams when data from the methods were combined (p < 0.001 and p = 0.012, respectively), with greater mean biomass in the cooler sampling months. Seasonal trends were likely the indirect results of varying temperatures. Although the size and range of this study were small, results suggest data sets collected using different methods may effectively be used together with some minor considerations due to potential confounding factors. This study provides motivation for the continued investigation of combining data sets derived from multiple methods of data collection, which could be useful in stream bioassessment and particularly important for the development of regional stream nutrient criteria for the southern Ozarks.


Assuntos
Monitoramento Ambiental/métodos , Poluentes Químicos da Água/análise , Arkansas , Biomassa , Clorofila , Clorofila A , Ecossistema , Rios/química
19.
Health Econ ; 25 Suppl 1: 42-52, 2016 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-26774106

RESUMO

Out-of-pocket spending is increasingly recognized as an important barrier to accessing health care, particularly in low-income and middle-income countries (LMICs) where a large portion of health expenditure comes from out-of-pocket payments. Emerging universal healthcare policies prioritize reduction of poverty impact such as catastrophic and impoverishing healthcare expenditure. Poverty impact is therefore increasingly evaluated alongside and within economic evaluations to estimate the impact of specific health interventions on poverty. However, data collection for these metrics can be challenging in intervention-based contexts in LMICs because of study design and practical limitations. Using a set of case studies, this letter identifies methodological challenges in collecting patient cost data in LMIC contexts. These components are presented in a framework to encourage researchers to consider the implications of differing approaches in data collection and to report their approach in a standardized and transparent way.


Assuntos
Análise Custo-Benefício/métodos , Coleta de Dados/métodos , Países em Desenvolvimento/economia , Custos de Cuidados de Saúde , Pobreza/economia , Coleta de Dados/economia , Economia Médica , Gastos em Saúde , Pesquisa sobre Serviços de Saúde , Humanos , Projetos de Pesquisa
20.
Int J Technol Assess Health Care ; 32(1-2): 69-77, 2016 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-26975757

RESUMO

OBJECTIVES: This study assesses the use of routinely collected claims data for managed entry agreements (MEA) in the illustrative context of German statutory health insurance (SHI) funds. METHODS: Based on a nonsystematic literature review, the data needs of different MEA were identified. A value-based typology to classify MEA on the basis of these data needs was developed. The typology is oriented toward health outcomes and utilization and costs, key components of a new technology's value. For each MEA type, the suitability of claims data in establishing evidence of the novel technology's value in routine care was systematically assessed. Assessment criteria were data availability, completeness, timeliness, confidentiality, reliability, and validity. RESULTS: Claims data are better suited to MEA addressing uncertainty regarding the utilization and costs of a novel technology in routine care. In schemes where safety aspects or clinical effectiveness are assessed, the role of claims data is limited because clinical information is not included in sufficient detail. CONCLUSIONS: The suitability of claims data depends on the source of uncertainty and, in consequence, the outcome measures chosen in the agreements. In all schemes, the validity of claims data should be judged with caution as data are collected for billing purposes. This framework may support manufacturers and payers in selecting the most suitable contract type and agreeing on contract conditions. More research is necessary to validate these results and to address remaining medical, economic, legal, and ethical questions of using claims data for MEA.


Assuntos
Revisão da Utilização de Seguros/estatística & dados numéricos , Participação no Risco Financeiro/organização & administração , Avaliação da Tecnologia Biomédica/organização & administração , Tomada de Decisões , Alemanha , Humanos , Reprodutibilidade dos Testes , Incerteza
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