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1.
Int J Drug Policy ; 123: 104283, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-38109837

RESUMO

BACKGROUND: Little is known about global practices regarding the provision of reimbursement for the participation of people who are incarcerated in research. To determine current practices related to the reimbursement of incarcerated populations for research, we aimed to describe international variations in practice across countries and carceral environments to help inform the development of more consistent and equitable practices. METHODS: We conducted a scoping review by searching PubMed, Cochrane library, Medline, and Embase, and conducted a grey literature search for English- and French-language articles published until September 30, 2022. All studies evaluating any carceral-based research were included if recruitment of incarcerated participants occurred inside any non-juvenile carceral setting; we excluded studies if recruitment occurred exclusively following release. Where studies failed to indicate the presence or absence of reimbursement, we assumed none was provided. RESULTS: A total of 4,328 unique articles were identified, 2,765 were eligible for full text review, and 426 were included. Of these, 295 (69%) did not offer reimbursement to incarcerated individuals. A minority (n = 13; 4%) included reasons explaining the absence of reimbursement, primarily government-level policies (n = 7). Among the 131 (31%) studies that provided reimbursement, the most common form was monetary compensation (n = 122; 93%); five studies (4%) offered possible reduced sentencing. Reimbursement ranged between $3-610 USD in total and 14 studies (11%) explained the reason behind the reimbursements, primarily researchers' discretion (n = 9). CONCLUSIONS: The majority of research conducted to date in carceral settings globally has not reimbursed incarcerated participants. Increased transparency regarding reimbursement (or lack thereof) is needed as part of all carceral research and advocacy efforts are required to change policies prohibiting reimbursement of incarcerated individuals. Future work is needed to co-create international standards for the equitable reimbursement of incarcerated populations in research, incorporating the voices of people with lived and living experience of incarceration.


Assuntos
Participação do Paciente , Prisioneiros , Recompensa , Humanos , Participação do Paciente/economia
2.
PLoS One ; 18(4): e0271294, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37079625

RESUMO

INTRODUCTION: Initiatives to support adherence to HIV treatment in South Africa are often centred on service delivery thereby avoiding key challenges to adherence: stigma and poverty. In contrast, this study aims to demonstrate the strength of an inclusive research and programme approach to improving the lives of people living with HIV and simultaneously ARV adherence. METHODS: Participatory Action Research combined with a visual participatory method (Photovoice) was used by postpartum women to share their experience of taking ARVs. The research was analysed from an interpretative and critical paradigm where both the women and a non-governmental organisation collaborated in the data collection, analysis and interpretation of the findings. Together, they then disseminated the findings and used a community-led approach to create a programme addressing these barriers effectively. FINDINGS: Two main barriers to ARV adherence emerged: the anticipated stigma associated with issues of disclosure and poverty epitomized by alcohol abuse, gender-based violence and hunger. The women and the NGO staff successfully presented their findings at conferences and collaborated to develop a programme of support for all women living with HIV in the area. The programme addresses each of the issues raised by the co-researchers and is run via a community-led process where the participants lead on design, implementation, and monitoring and ultimately will revise the programme as needed. DISCUSSION: The inclusive approach of this study enabled these postpartum women to portray the intersectional nature of both HIV stigma and poverty that affects their lives. By working with the local NGO to develop a programme based on these insights, they were able to tailor specific interventions to the issues women living with HIV face in their area. In doing so, they aim to improve the lives of people living with HIV by demonstrating a more sustainable way to impact ARV adherence. CONCLUSION: Currently, health service insistence on measuring ARV adherence does not address the core barriers to taking ARVs and misses the opportunity to focus on the long term health and well-being of people living with HIV. In contrast, locally targeted participatory research and programme development based on inclusivity, collaboration and ownership do address the fundamental challenges of people living with HIV. In doing so, it can have a greater impact on their long term well-being.


Assuntos
Fármacos Anti-HIV , Infecções por HIV , Adesão à Medicação , Pobreza , Sistemas de Apoio Psicossocial , Estigma Social , Feminino , Humanos , Infecções por HIV/tratamento farmacológico , Infecções por HIV/economia , Infecções por HIV/psicologia , Período Pós-Parto , Pobreza/economia , Pobreza/psicologia , Cooperação e Adesão ao Tratamento/psicologia , África do Sul , Serviços de Saúde Comunitária/economia , Serviços de Saúde Comunitária/métodos , Acessibilidade aos Serviços de Saúde/economia , Adesão à Medicação/psicologia , Fármacos Anti-HIV/administração & dosagem , Fármacos Anti-HIV/uso terapêutico , Determinantes Sociais da Saúde/economia , Participação do Paciente/economia , Participação do Paciente/métodos , Participação do Paciente/psicologia , Enquadramento Interseccional , Pesquisa Participativa Baseada na Comunidade
3.
Cancer Prev Res (Phila) ; 14(9): 905-916, 2021 09.
Artigo em Inglês | MEDLINE | ID: mdl-34244154

RESUMO

Screening for colorectal and breast cancer is considered cost effective, but limited evidence exists on cost-effectiveness of screening promotion interventions that simultaneously target both cancers. Increasing Colorectal and Breast Cancer Screening (Project COBRA), a randomized controlled trial conducted in the community, examined the cost-effectiveness of an innovative tailored web-based intervention compared with tailored telephone counseling and usual care. Screening status at 6 months was obtained by participant surveys plus medical record reviews. Cost was prospectively measured from the patient and provider perspectives using time logs and project invoices. Relative efficiency of the interventions was quantified by the incremental cost-effectiveness ratios. Nonparametric bootstrapping and net benefit regression analysis were used to assess statistical uncertainty of the results. The average cost per participant to implement the Phone counseling, Web-based, and Web + Phone counseling interventions were $277, $314, and $337, respectively. Comparing Phone counseling with usual care resulted in an additional cost of $300 (95% confidence interval [CI]: $283-$320) per cancer screening test and $421 (95% CI: $400-$441) per additional person screened in the target population. Phone counseling alone was more cost-effective than the Web + Phone intervention. Web-based intervention alone was more costly but less effective than the Phone counseling. When simultaneously promoting screening for both colorectal and breast cancer the Web-based intervention was less cost-effective compared with Phone and Web + Phone strategies. The results suggest that targeting multiple cancer screening may improve the cost-effectiveness of cancer screening interventions. PREVENTION RELEVANCE: This study informs researchers, decision makers, healthcare providers, and payers about the improved cost-effectiveness of targeting multiple cancer screenings for cancer early detection programs.


Assuntos
Neoplasias da Mama/diagnóstico , Neoplasias Colorretais/diagnóstico , Detecção Precoce de Câncer/métodos , Intervenção Baseada em Internet , Telefone , Idoso , Neoplasias da Mama/economia , Neoplasias da Mama/epidemiologia , Neoplasias Colorretais/economia , Neoplasias Colorretais/epidemiologia , Análise Custo-Benefício , Detecção Precoce de Câncer/economia , Detecção Precoce de Câncer/estatística & dados numéricos , Feminino , Humanos , Intervenção Baseada em Internet/economia , Intervenção Baseada em Internet/estatística & dados numéricos , Pessoa de Meia-Idade , Cooperação do Paciente/estatística & dados numéricos , Educação de Pacientes como Assunto/economia , Educação de Pacientes como Assunto/métodos , Educação de Pacientes como Assunto/estatística & dados numéricos , Participação do Paciente/economia , Participação do Paciente/estatística & dados numéricos , Seleção de Pacientes , Sistemas de Alerta/economia , Inquéritos e Questionários , Telefone/economia , Estados Unidos/epidemiologia
4.
Clin Trials ; 18(4): 477-487, 2021 08.
Artigo em Inglês | MEDLINE | ID: mdl-33938244

RESUMO

BACKGROUND/AIMS: Financial compensation for research participation is a major focus of ethical concern regarding human subject recruitment. Phase I trials are sometimes considered to be a lucrative source of income for healthy volunteers, encouraging some people to become "professional guinea pigs." Yet, little is known about how much these clinical trials actually pay and how much healthy volunteers earn from them. METHODS: As part of a mixed-methods, longitudinal study of healthy volunteers, we required participants to complete clinical trial diaries, or surveys that captured detailed information about screening and enrollment in Phase I trials. Over a 3-year period, participants provided information online or via telephone about each clinical trial for which they screened (e.g. the clinic name, the study's therapeutic area, the length of the trial, the number of nights spent in the clinic, and the study compensation), and whether they qualified for trial inclusion. Clinical trial diaries generated data about whether participants continued to screen for and enroll in clinical trials and how much money they earned from their participation. RESULTS: 131 participants routinely completed clinical trial diaries or confirmed that they had not screened for any new clinical trials. Together, these participants screened for 1001 clinical trials at 73 research facilities during a 3-year period. Overall, the median clinical trial compensation was US$3070 (range = US$150-US$13,000). Participants seeking new healthy volunteer trials tended to screen for three studies per year, participate in one or two studies, and earn roughly US$4000 annually. Participants who were unemployed earned the most income from clinical trials compared to those with full-time or part-time jobs, and those individuals whom we label "occupational" participants because of their persistent pursuit of clinical trials earned more than people who screened occasionally. Notably, the median annual trial compensation was well below US$10,000 for all employment groups, and most occupational healthy volunteers also earned less than US$10,000 each year. The 10% of participants who earned the most had a median annual income of US$18,885 from clinical trials, and there was significant volatility in these individuals' earnings from year to year. CONCLUSION: Despite the perception that Phase I enrollment can generate significant earnings, it was exceedingly rare for anyone in this study to make more than US$20,000 in a single year, and unusual to earn even between US$10,000 and US$20,000. From an ethics perspective, individual trials might appear to unduly induce enrollment by offering significant sums of money, but given our findings, the larger problem for low-income participants may be the unrealistic perception that clinical trials alone could be a way of earning a living.


Assuntos
Ensaios Clínicos Fase I como Assunto/economia , Renda , Participação do Paciente/economia , Sujeitos da Pesquisa , Voluntários Saudáveis , Humanos , Estudos Longitudinais , Inquéritos e Questionários
5.
Stem Cells Transl Med ; 10(6): 815-819, 2021 06.
Artigo em Inglês | MEDLINE | ID: mdl-34010517

RESUMO

In our critique of a pay-to-participate study, we address how the failure to disclose study-related payments appears to have violated STEM CELLS Translational Medicine's editorial policies concerning conflict-of-interest and financial disclosure. Our analysis also identifies broader ethical issues and scientific concerns related to pay-to-participate studies conducted by businesses with a record of selling purported stem cell treatments before determining whether the products they sell are safe and efficacious. Authors of peer-reviewed articles have a responsibility to comply with journal policies and disclose financial conflicts of interest to editors, reviewers, and readers. Authors should also disclose when stem cell interventions being tested in clinical trials have already been sold on a direct-to-consumer basis as "stem cell treatments" by authors' affiliate institutions. Financial conflicts of interest and other forms of possible bias must be disclosed to put clinical studies in context and facilitate the critical assessment of research methods, findings, and conclusions. The apparent failure to comply with journal editorial policies and disclose such financial conflicts warrants careful investigation.


Assuntos
Conflito de Interesses , Revelação , Participação do Paciente/economia , Ensaios Clínicos como Assunto , Políticas Editoriais , Humanos , Células-Tronco , Ciência Translacional Biomédica
6.
Stem Cells Transl Med ; 10(6): 820-822, 2021 06.
Artigo em Inglês | MEDLINE | ID: mdl-34010519
7.
JAMA Netw Open ; 3(10): e2019429, 2020 10 01.
Artigo em Inglês | MEDLINE | ID: mdl-33034639

RESUMO

Importance: Financial incentives can improve medication adherence and cardiovascular disease risk, but the optimal design to promote sustained adherence after incentives are discontinued is unknown. Objective: To determine whether 6-month interventions involving different financial incentives to encourage statin adherence reduce low-density lipoprotein cholesterol (LDL-C) levels from baseline to 12 months. Design, Setting, and Participants: This 4-group, randomized clinical trial was conducted from August 2013 to July 2018 among several large US insurer or employer populations and the University of Pennsylvania Health System. The study population included adults with elevated risk of cardiovascular disease, suboptimal LDL-C control, and evidence of imperfect adherence to statin medication. Data analysis was performed from July 2017 to June 2019. Interventions: The interventions lasted 6 months during which all participants received daily medication reminders and an electronic pill bottle. Statin adherence was measured by opening the bottle. For participants randomized to the 3 intervention groups, adherence was rewarded with financial incentives. The sweepstakes group involved incentives for daily adherence. In the deadline sweepstakes group, incentives were reduced if participants were adherent only after a reminder. The sweepstakes plus deposit contract group split incentives between daily adherence and a monthly deposit reduced for each day of nonadherence. Main Outcomes and Measures: The primary outcome was change in LDL-C level from baseline to 12 months. Results: Among 805 participants randomized (199 in the simple daily sweepstakes group, 204 in the deadline sweepstakes group, 201 in the sweepstakes plus deposit contract group, and 201 in the control group), the mean (SD) age was 58.5 (10.3) years; 519 participants (64.5%) were women, 514 (63.9%) had diabetes, and 273 (33.9%) had cardiovascular disease. The mean (SD) baseline LDL-C level was 143.2 (42.5) mg/dL. Measured adherence at 6 months (defined as the proportion of 180 days with electronic pill bottle opening) in the control group (0.69; 95% CI, 0.66-0.72) was lower than that in the simple sweepstakes group (0.84; 95% CI, 0.81-0.87), the deadline sweepstakes group (0.86; 95% CI, 0.83-0.89), and the sweepstakes plus deposit contract group (0.87; 95% CI, 0.84-0.90) (P < .001 for each incentive group vs control). LDL-C levels were measured for 636 participants at 12 months. Mean LDL-C level reductions from baseline to 12 months were 33.6 mg/dL (95% CI, 28.4-38.8 mg/dL) in the control group, 32.4 mg/dL (95% CI, 27.3-37.6 mg/dL) in the sweepstakes group, 33.2 mg/dL (95% CI, 28.1-38.3 mg/dL) in the deadline sweepstakes group, and 36.5 mg/dL (95% CI, 31.3-41.7 mg/dL) in the sweepstakes plus deposit contract group (adjusted P > .99 for each incentive group vs control). Conclusions and Relevance: Compared with the control group, different financial incentives improved measured statin adherence but not LDL-C levels. This result points to the importance of directly measuring health outcomes, rather than simply adherence, in trials aimed at improving health behaviors. Trial Registration: ClinicalTrials.gov Identifier: NCT01798784.


Assuntos
Doenças Cardiovasculares/prevenção & controle , Inibidores de Hidroximetilglutaril-CoA Redutases/uso terapêutico , Adesão à Medicação/estatística & dados numéricos , Participação do Paciente/economia , Reembolso de Incentivo/estatística & dados numéricos , Recompensa , Adulto , Anticolesterolemiantes/uso terapêutico , LDL-Colesterol/sangue , Feminino , Humanos , Masculino , Adesão à Medicação/psicologia , Pessoa de Meia-Idade , Motivação , Participação do Paciente/psicologia , Fatores de Tempo
9.
J Orthop Sports Phys Ther ; 50(8): 413-414, 2020 08.
Artigo em Inglês | MEDLINE | ID: mdl-32736501

RESUMO

This editorial builds on the previous editorials in the patient partnership series, and aims to share practical advice related to compensation for patient research partners. In the authors' first publication on patient partner compensation in research and health care, they presented the "why" and "how." Here, they build on the "how" to help alleviate the awkwardness of that conversation. The compensation conversation, as a regular part of this type of partnership, allows teams to codevelop projects and focus on the output and outcomes of their collaborative work. J Orthop Sports Phys Ther 2020;50(8):413-414. doi:10.2519/jospt.2020.0106.


Assuntos
Pesquisa Biomédica/economia , Compensação e Reparação , Pesquisa sobre Serviços de Saúde/economia , Participação do Paciente/economia , Sujeitos da Pesquisa , Orçamentos , Humanos
10.
Int J Gynecol Cancer ; 30(8): 1177-1182, 2020 08.
Artigo em Inglês | MEDLINE | ID: mdl-32376734

RESUMO

OBJECTIVE: Recurrence of low-risk endometrioid endometrial cancer is rare, and traditional hospital follow-up has a cost to both the patient and the healthcare system, without evidence of benefit. We examined the uptake of patient-initiated follow-up, pattern of recurrences, and survival for women following surgical treatment of low-risk endometrial cancer and compared estimated costs with hospital follow-up. METHODS: This study was a prospective audit of outcomes following implementation of a patient-initiated follow-up policy in a UK-based gynecological cancer center for women with low-risk endometrial cancer treated surgically (International Federation of Gynecology and Obstetrics (FIGO) stage 1A, G1-2) from January 2010 to December 2015. Women were identified following multidisciplinary team meetings and data were collected from the electronic cancer register, paper, and electronic clinical records. Health service costs were calculated based on standard tariffs for follow-up appointments; patient costs were estimated from mileage traveled from home postcode and parking charges. Progression-free survival and overall survival were assessed. Estimated financial costs to the health service and patients of hospital follow-up were compared with actual patient-initiated follow-up costs. RESULTS: A total of 129 women were offered patient-initiated follow-up (declined by four; accepted by another 11 after hospital follow-up for 6 months to 3.5 years) with median follow-up of 60.7 months (range 1.4-109.1 months). Ten women recurred: four vaginal vault recurrences (all salvaged), three pelvic recurrences (all salvaged), and three distant metastatic disease (all died). Five-year disease-specific survival was 97.3%. Ten women in the cohort died: three from endometrial cancer and seven from unrelated causes. The cost saving to the health service of patient-initiated follow-up compared with a traditional hospital follow-up regimen was £116 403 (median £988.60 per patient,range £0-£1071). Patients saved an estimated £7122 in transport and parking costs (median £57.22 per patient,range £4.98-£147.70). CONCLUSION: Patient-initiated follow-up for low risk endometrial cancer has cost benefits to both health service and patients. Those with pelvic or vault recurrence had salvageable disease, despite patient-initiated follow-up.


Assuntos
Assistência ao Convalescente/economia , Neoplasias do Endométrio/economia , Neoplasias do Endométrio/cirurgia , Custos de Cuidados de Saúde , Recidiva Local de Neoplasia , Participação do Paciente/economia , Adulto , Idoso , Idoso de 80 Anos ou mais , Redução de Custos , Análise Custo-Benefício , Neoplasias do Endométrio/patologia , Feminino , Seguimentos , Humanos , Pessoa de Meia-Idade , Recidiva Local de Neoplasia/economia , Recidiva Local de Neoplasia/terapia , Papel do Profissional de Enfermagem , Intervalo Livre de Progressão , Estudos Prospectivos , Fatores de Risco , Taxa de Sobrevida , Meios de Transporte/economia
11.
Clin Trials ; 17(3): 264-272, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-32063065

RESUMO

There has been significant analysis of the ethical and regulatory issues involved with paying research participants, but less attention has been focused specifically on paying economically vulnerable individuals and the unique challenges it may present. This is important, as individuals of lower socio-economic standing are present in all disease groups and study populations. Moreover, clinical research is often conducted in economically under-developed locales, such as lower- or middle-income countries as well as impoverished locales of otherwise wealthy nations (such as, for example, rural Appalachia in the United States). Is it ethical to offer payment in such contexts? What are the ethical considerations relevant for determining payment rates and practices to individuals who are economically vulnerable? We offer an analysis of these issues, focusing on four unique areas of concern: (1) whether the risk of undue influence is greater for economically vulnerable individuals than for wealthier ones; (2) whether payment unacceptably raises the risk of 'unjust influence' or disproportionate representation of poor people in clinical research; (3) the positive reasons in favor of paying economically vulnerable people that stem from the ethical value of fairness; and (4) appropriate compensation rates for economically vulnerable populations. Our analysis supports the position that payment to economically vulnerable populations is ethically justified and indeed desirable when certain conditions are met.


Assuntos
Ensaios Clínicos como Assunto/economia , Participação do Paciente/economia , Seleção de Pacientes/ética , Populações Vulneráveis , Pesquisa Biomédica/economia , Pesquisa Biomédica/ética , Ensaios Clínicos como Assunto/ética , Humanos , Renda , Consentimento Livre e Esclarecido/ética , Motivação , Sujeitos da Pesquisa , Fatores Socioeconômicos
12.
Trials ; 21(1): 213, 2020 Feb 21.
Artigo em Inglês | MEDLINE | ID: mdl-32085717

RESUMO

BACKGROUND: Clinical trials often struggle to retain the number of participants required to make valid and reliable assessments about the effectiveness of treatments. Several individual randomised comparisons of interventions to improve retention in trials have been shown to be effective. Many of these retention interventions target participants' behaviour (e.g. returning questionnaires or attending a follow-up visit). Although not designed as such, these interventions can be thought of as behaviour change interventions. By coding the constituent behaviour change components of effective retention interventions, the interventions' potential 'active ingredients' responsible for improvements in retention can be identified and maximised for future gains. METHODS: Studies reporting effective retention interventions were identified from existing meta-analyses in the literature. Published manuscripts and intervention and comparator group material were coded into their behaviour change techniques (BCTs) using the BCT taxonomy version 1. Two authors independently coded materials using a standardised coding manual and discussed any disagreements to reach consensus. Data on study characteristics including host trial context, timing, mode of delivery and dosage of retention intervention were recorded. RESULTS: Two intervention types were identified as having evidence of improving retention in existing meta-analyses: monetary incentives and electronic prompts. None of the interventions identified from the included studies explicitly stated a theoretical rationale for their development. BCTs were identified in both intervention and comparator groups across both intervention types and there was heterogeneity with regard to their presentation within and across interventions. The BCTs identified in the 'monetary incentive' interventions differed to the comparator group. Contrastingly, the BCTs identified in 'electronic prompts' interventions were identical in both the control and intervention groups (within studies) and differed only in terms of mode of delivery and dosing. CONCLUSIONS: Attending a measurement visit or returning a questionnaire is a behaviour and trialists should be mindful of this when designing retention interventions. Our work in this area provides some of the first evidence of the impact of implicit use of BCTs in retention interventions and highlights their potential promise for future trials.


Assuntos
Terapia Comportamental/classificação , Classificação/métodos , Confiabilidade dos Dados , Participação do Paciente/economia , Humanos , Ensaios Clínicos Controlados Aleatórios como Assunto
14.
BMC Res Notes ; 12(1): 667, 2019 Oct 21.
Artigo em Inglês | MEDLINE | ID: mdl-31639069

RESUMO

OBJECTIVE: This study aimed to develop a questionnaire for measuring patient perceptions of participating in clinical trials. Development was based on earlier research on patient views of involvement in medical care and a literature review. Patients were recruited from an ongoing clinical trial focused on cardiovascular illness and from an outpatient psychiatry department. Factor analysis was conducted on a pilot version of the questionnaire in 2016 and on a revised version in 2017. RESULTS: A total of 53 patients were recruited for the pilot study and 55 were recruited for the main study, substantially below the goal of 100 participants. Factor analysis revealed six factors measuring aspects of patients' perceptions of participating in clinical trials, including motivation, risks and benefits, the nature of the trial itself, and practical considerations, such as cost and convenience. Inter-scale correlations ranged between 0.06 and 0.64, indicating acceptable scale independence. Reliability scores (Cronbach's alphas) ranged from 0.62 to 0.85. Factor analysis results were somewhat unstable, with shared variance for several items across scales. This is likely due to the small sample sizes. In larger, more diverse patient samples, this questionnaire can be useful for measuring and incorporating patients' views into the design and execution of clinical trials.


Assuntos
Ensaios Clínicos como Assunto/psicologia , Participação do Paciente/psicologia , Seleção de Pacientes , Psicometria/estatística & dados numéricos , Inquéritos e Questionários , Doenças Cardiovasculares/psicologia , Ensaios Clínicos como Assunto/estatística & dados numéricos , Análise Fatorial , Feminino , Gastos em Saúde/estatística & dados numéricos , Humanos , Masculino , Transtornos Mentais/psicologia , Pessoa de Meia-Idade , Motivação/fisiologia , Participação do Paciente/economia , Participação do Paciente/estatística & dados numéricos , Projetos Piloto , Medição de Risco/economia
15.
Health Expect ; 22(5): 1173-1184, 2019 10.
Artigo em Inglês | MEDLINE | ID: mdl-31398772

RESUMO

BACKGROUND: The degree to which patients participate in their care can have a positive impact on health outcomes. This review aimed to map the current literature on patient participation behaviours in interactions with physicians and the extent to which differences in these behaviours can be explained by socio-economic status (SES). SEARCH STRATEGY: Four electronic databases were searched from 1980 onwards using key words related to socio-economic status and patient participation behaviours. STUDY SELECTION: Titles, abstracts and full texts were screened by two reviewers, with the second reviewer screening 20% of all entries. DATA EXTRACTION: Data on year of publication, country, patient population, setting, patient participation behaviour studied, and SES measure used were extracted. MAIN RESULTS: Forty-nine studies were included in the review. Most studies were conducted in the United States, and the most commonly studied patient participation behaviour was involvement in decision making. Most studies measured SES using education as an indicator, with very few studies using occupation as a measure. Many studies did not report on participants' medical condition or study setting. Patient participation in their health-care appointment increased with increasing SES in 24 studies, although in 27 studies no significant association was found. DISCUSSION AND CONCLUSIONS: Current literature was found to be mainly US-centric. Many studies did not specify participants' medical condition or in what setting the study was undertaken. More studies are needed on less commonly studied patient participation behaviours. It would be helpful for further studies to also include a wider range of SES indicators.


Assuntos
Participação do Paciente , Relações Médico-Paciente , Fatores Socioeconômicos , Humanos , Participação do Paciente/economia , Participação do Paciente/psicologia , Participação do Paciente/estatística & dados numéricos
17.
Bioethics ; 33(7): 792-797, 2019 09.
Artigo em Inglês | MEDLINE | ID: mdl-31135070

RESUMO

Antibiotic resistance is one of the most pressing public health problems humanity faces. Research into new classes of antibiotics and new kinds of treatments - including risky experimental treatments such as phage therapy and vaccines - is an important part of improving our ability to treat infectious diseases. In order to aid this research, we will argue that we should permit researchers to pay people any amount of money to compensate for the risks of participating in clinical trials, including 'challenge studies' that involve deliberately infecting patients. We think that standard worries about paying for participation in risky research are reducible to concerns that can be addressed with the right screening mechanisms.


Assuntos
Pesquisa Biomédica/economia , Pesquisa Biomédica/ética , Resistência Microbiana a Medicamentos , Participação do Paciente/economia , Participação do Paciente/estatística & dados numéricos , Sujeitos da Pesquisa/estatística & dados numéricos , Salários e Benefícios/economia , Humanos
18.
Psychiatr Rehabil J ; 42(4): 401-406, 2019 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-31070443

RESUMO

OBJECTIVE: Mental health self-direction, also known as self-directed care, involves an individual budget controlled by the participant with support from a specially trained recovery coach. The model under study here, implemented in a Medicaid behavioral health managed care context, allowed individuals to intentionally reduce mental health service use and apply cost savings as "Freedom Funds" to purchase a range of goods and services that are not typically considered mental health services to support recovery. This pre-post study examined mental health service utilization and cost before and after participating in self-direction. METHODS: The study involved Medicaid claims data for 45 self-directing participants over a 3-year period. Bivariate statistics were computed to identify meaningful pre-post differences in service utilization and standardized monthly costs. RESULTS: Median standardized monthly mental health clinical outpatient costs were significantly lower after self-direction participation compared to before. Participants spent a mean of $182 per month in Freedom Funds to purchase a range of nonclinical goods and services to work toward recovery goals. Total service costs-including Freedom Funds used during self-direction-did not differ significantly before and after program participation. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: Findings from this modest pre-post examination of self-direction suggest that mental health self-direction can result in more person-driven, individualized services without increasing costs. More research is needed to examine the cost-effectiveness of self-direction and to understand how program design and implementation factors influence the relationship between self-direction and service costs. (PsycINFO Database Record (c) 2019 APA, all rights reserved).


Assuntos
Serviços de Saúde Mental/organização & administração , Participação do Paciente , Reabilitação Psiquiátrica , Autocuidado , Adulto , Orçamentos/métodos , Custos e Análise de Custo , Utilização de Instalações e Serviços/economia , Feminino , Humanos , Masculino , Medicaid/estatística & dados numéricos , Saúde Mental/economia , Pessoa de Meia-Idade , Participação do Paciente/economia , Participação do Paciente/métodos , Participação do Paciente/psicologia , Reabilitação Psiquiátrica/economia , Reabilitação Psiquiátrica/métodos , Reabilitação Psiquiátrica/psicologia , Autocuidado/economia , Autocuidado/métodos , Autocuidado/psicologia , Estados Unidos
19.
Oncologist ; 24(8): 1048-1055, 2019 08.
Artigo em Inglês | MEDLINE | ID: mdl-30988039

RESUMO

BACKGROUND: The financial burden experienced by patients with cancer represents a barrier to clinical trial participation, and interventions targeting patients' financial concerns are needed. We sought to assess the impact of an equity intervention on clinical trial patients' financial burden. MATERIALS AND METHODS: We developed an equity intervention to reimburse nonclinical expenses related to trials (e.g., travel and lodging). From July 2015 to July 2017, we surveyed intervention and comparison patients matched by age, sex, cancer type, specific trial, and trial phase. We longitudinally assessed financial burden (e.g., trial-related travel and lodging cost concerns, financial wellbeing [FWB] with the COmprehensive Score for financial Toxicity [COST] measure) at baseline, day 45, and day 90. We used longitudinal models to assess intervention effects over time. RESULTS: Among 260 participants, intervention patients were more likely than comparison patients to have incomes under $60,000 (52% vs. 24%, p < .001) and to report travel-related (41.0% vs. 6.8%, p < 0.001) and lodging-related (32.5% vs. 2.0%, p < .001) cost concerns at baseline. Intervention patients were more likely to report travel to appointments as their most significant financial concern (24.0% vs. 7.0%, p = .001), and they had worse FWB than comparison patients (COST score: 15.32 vs. 23.88, p < .001). Over time, intervention patients experienced greater improvements in their travel-related (-10.0% vs. +1.2%, p = .010) and lodging-related (-3.9% vs. +4.0%, p = .003) cost concerns. Improvements in patients reporting travel to appointments as their most significant financial concern and COST scores were not statistically significant. CONCLUSION: Cancer clinical trial participants may experience substantial financial issues, and this equity intervention demonstrates encouraging results for addressing these patients' longitudinal financial burden. IMPLICATIONS FOR PRACTICE: Clinical trials are critical for developing novel therapies for patients with cancer, yet financial barriers may discourage some patients from participating in cancer clinical trials. This study found that patients who received financial assistance from an equity intervention experienced significant improvements over time in their concerns about the cost of travel and lodging associated with clinical trials compared with comparison patients who did not receive financial assistance from the equity intervention. Among cancer clinical trial participants, an equity intervention shows potential for addressing patients' concerns regarding clinical trial-related travel and lodging expenses.


Assuntos
Ensaios Clínicos como Assunto/economia , Declarações Financeiras/organização & administração , Financiamento Pessoal/estatística & dados numéricos , Neoplasias/terapia , Participação do Paciente/economia , Viagem/economia , Adulto , Idoso , Efeitos Psicossociais da Doença , Feminino , Declarações Financeiras/estatística & dados numéricos , Humanos , Renda , Estudos Longitudinais , Masculino , Massachusetts , Pessoa de Meia-Idade , Neoplasias/economia , Participação do Paciente/estatística & dados numéricos , Avaliação de Programas e Projetos de Saúde , Estudos Prospectivos , Inquéritos e Questionários/estatística & dados numéricos , Viagem/estatística & dados numéricos
20.
Am J Prev Med ; 56(4): 563-570, 2019 04.
Artigo em Inglês | MEDLINE | ID: mdl-30898222

RESUMO

INTRODUCTION: This study evaluates the effect of program and incentive characteristics on satisfaction with incentives and perceived impact of incentives on behavior change among Medicaid beneficiaries who participated in the Centers for Medicare and Medicaid Services Medicaid Incentives for Prevention of Chronic Diseases program. METHODS: In 2014-2015, an English- and Spanish-language survey was administered to Medicaid Incentives for Prevention of Chronic Diseases program participants about their satisfaction with incentives and perceived impact of incentives. Completed surveys were received from 2,276 eligible sample members (response rate=52.7%). In 2016-2017, multilevel, multivariable, ordinal logistic regression models were performed to examine program characteristics that predict outcomes, while controlling for respondent characteristics. RESULTS: Medicaid Incentives for Prevention of Chronic Diseases participants were satisfied with program incentives. Most survey respondents strongly agreed that they liked getting incentives for taking care of their health (78%), they were happy with the incentives overall (75%), the incentives were fair (73%), and they liked how often they received incentives (67%). Participants in programs delivered by telephone reported higher satisfaction with incentives compared with those in programs delivered in person. However, participants in programs delivered both in person and by telephone were more likely to perceive a positive impact of incentives. Incentive form was a significant predictor of satisfaction with incentives but not of incentive impact. Dollar amount of incentives influenced satisfaction with incentives and impact of incentives. CONCLUSIONS: Program delivery method, incentive form, and incentive magnitude are important characteristics to consider when designing incentive programs. Incentive programs can consider providing modest incentive amounts to achieve self-reported impact on behavior change.


Assuntos
Centers for Medicare and Medicaid Services, U.S./economia , Doença Crônica/prevenção & controle , Promoção da Saúde/economia , Motivação , Satisfação do Paciente/estatística & dados numéricos , Adulto , Centers for Medicare and Medicaid Services, U.S./estatística & dados numéricos , Doença Crônica/economia , Feminino , Comportamentos Relacionados com a Saúde , Promoção da Saúde/métodos , Promoção da Saúde/estatística & dados numéricos , Humanos , Masculino , Medicaid/economia , Medicaid/estatística & dados numéricos , Pessoa de Meia-Idade , Participação do Paciente/economia , Participação do Paciente/psicologia , Participação do Paciente/estatística & dados numéricos , Satisfação do Paciente/economia , Reembolso de Incentivo/economia , Reembolso de Incentivo/estatística & dados numéricos , Autorrelato/estatística & dados numéricos , Estados Unidos
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