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1.
Support Care Cancer ; 32(7): 422, 2024 Jun 11.
Artigo em Inglês | MEDLINE | ID: mdl-38858225

RESUMO

OBJECTIVE: Caregivers support individuals undergoing cancer treatment by assisting with activities, managing care, navigating healthcare systems, and communicating with care teams. We explored the quality and quantity of caregiver participation during recorded decision-making clinical appointments in women with metastatic breast cancer. METHODS: This was a convergent parallel mixed methods study that utilized qualitative and quantitative data collection and analysis. Caregiver participation quality was operationalized using a summative thematic content analysis to identify and sum caregiver actions performed during appointments. Performance of a greater number of actions was considered greater quality of participation. Caregiver participation quantity was measured by calculating the proportion of speaking time. Participation quality and quantity were compared to patient activation, assessed using the Patient Activation Measure 1-month post decision-making appointment. RESULTS: Fifty-three clinical encounters between patients with MBC, their caregivers, and oncologists were recorded. Identified caregiver actions included: General Support; Management of Treatment or Medication; Treatment History; Decision-Making; Insurance or Money; Pharmacy; Scheduling; Travel Concerns; General Cancer Understanding; Patient Specific Cancer Understanding; Caregiver-Initiated or Emphasis on Symptom Severity; and Caregiver Back-Up of Patient Symptom Description. Caregivers averaged 5 actions (SD 3): 48% of patient's caregivers had low quality (< 5 actions) and 52% had high quality (> 6 actions) participation. Regarding quantity, caregivers spoke on average for 4% of the encounter, with 60% of caregivers speaking less than 4% of the encounter (low quantity) and 40% of caregivers speaking more than 4% (high quantity). Greater quality and quantity of caregiver participation was associated with greater patient activation. CONCLUSIONS: Caregivers perform a variety of actions during oncological decision-making visits aiding both patient and provider. Greater participation in terms of quantity and quality by the caregiver was associated with greater patient activism, indicating a need for better integration of the caregiver in clinical decision-making environments.


Assuntos
Neoplasias da Mama , Cuidadores , Tomada de Decisões , Participação do Paciente , Humanos , Feminino , Cuidadores/psicologia , Neoplasias da Mama/terapia , Pessoa de Meia-Idade , Participação do Paciente/estatística & dados numéricos , Idoso , Adulto , Metástase Neoplásica , Pesquisa Qualitativa
2.
BMC Public Health ; 24(1): 1599, 2024 Jun 14.
Artigo em Inglês | MEDLINE | ID: mdl-38877430

RESUMO

This study aims to analyze variables related to patient activation in 78 individuals with visual impairment. The Patient Activation Measure (PAM) scores of participants showed no differences between males and females. It was found that the individuals living in urban areas, and participants with higher income and education levels had higher PAM scores. Still, the difference between the groups was statistically insignificant (p > 0.05). The PAM scores of the visually impaired individuals reflect taking action level of activation (66.51 ± 18.14-PAM level 3). There was a moderately significant relationship between PAM scores and visually impaired individuals' self-management, self-efficacy, healthy life awareness, social relations, and environment (p < 0.001). We found that the variables included in the regression model (marital status, self-management, self-efficacy, healthy life awareness, social relations, and environment) explained 72.2% of the PAM score. Individuals with visual impairment can be given training on self-management, self-efficacy, healthy life awareness, and quality of life associated with social relations and environment to develop positive health behaviors.


Assuntos
Autoeficácia , Transtornos da Visão , Humanos , Masculino , Feminino , Pessoa de Meia-Idade , Adulto , Transtornos da Visão/psicologia , Participação do Paciente/estatística & dados numéricos , Participação do Paciente/psicologia , Idoso , Qualidade de Vida , Adulto Jovem , Inquéritos e Questionários
3.
Arch Gerontol Geriatr ; 124: 105472, 2024 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-38728823

RESUMO

BACKGROUND: Hip fractures can significantly impact older adults' mobility and function. Effective rehabilitation is crucial to help them regain independence and quality of life. However, little is known about the association between patient activation and hip fracture rehabilitation. This study aims to assess the association between the PAM-13 scores and the level of physical function, mobility, and activities of daily living in older adults following a hip fracture rehabilitation program. METHOD: An exploratory outcome study from a cluster-randomized stepped-wedge clinical controlled trial. Two hundred thirty-nine patients were classified into four Patient Activation Measure-Levels (PAM-13) according to their PAM-13 scores, reflecting their confidence and preparedness to manage their health. Level 1 represents the lowest level of confidence. The patient's mobility, function, and daily activities were evaluated at discharge and after 12 and 24 weeks. RESULTS: The cohort had a median age of 78; 67% were female, and 50% lived alone. There were no significant differences in demographics between the PAM-Levels. PAM-Level 1 patients had longer hospital stays and lower mobility scores than PAM-Level 4 patients. However, all patients improved over time, and higher initial PAM levels resulted in better outcomes. PAM-Level 1 patients improved in Time Up and Go score from a median score of 54 seconds to 14 seconds at 24 weeks, while PAM-Level 4 patients improved from 26 to 9 seconds. CONCLUSION: Our study found an association between PAM levels and functional outcomes in hip fracture rehabilitation. Patients with higher activation levels had better mobility and functional outcomes.


Assuntos
Atividades Cotidianas , Fraturas do Quadril , Humanos , Fraturas do Quadril/reabilitação , Feminino , Masculino , Idoso , Idoso de 80 Anos ou mais , Participação do Paciente/estatística & dados numéricos , Recuperação de Função Fisiológica , Qualidade de Vida , Resultado do Tratamento
4.
BMC Med Res Methodol ; 24(1): 103, 2024 May 02.
Artigo em Inglês | MEDLINE | ID: mdl-38698315

RESUMO

BACKGROUND: Use of participatory research methods is increasing in research trials. Once partnerships are established with end-users, there is less guidance about processes research teams can use to successfully incorporate end-user feedback. The current study describes the use of a brief reflections process to systematically examine and evaluate the impact of end-user feedback on study conduct. METHODS: The Comparative Effectiveness of Trauma-Focused and Non-Trauma- Focused Treatment Strategies for PTSD among those with Co-Occurring SUD (COMPASS) study was a randomized controlled trial to determine the effectiveness of trauma-focused psychotherapy versus non-trauma-focused psychotherapy for Veterans with co-occurring posttraumatic stress disorder and substance use disorder who were entering substance use treatment within the Department of Veterans Affairs. We developed and paired a process of "brief reflections" with our end-user engagement methods as part of a supplemental evaluation of the COMPASS study engagement plan. Brief reflections were 30-minute semi-structured discussions with the COMPASS Team following meetings with three study engagement panels about feedback received regarding study issues. To evaluate the impact of panel feedback, 16 reflections were audio-recorded, transcribed, rapidly analyzed, and integrated with other study data sources. RESULTS: Brief reflections revealed that the engagement panels made recommended changes in eight areas: enhancing recruitment; study assessment completion; creating uniformity across Study Coordinators; building Study Coordinator connection to Veteran participants; mismatch between study procedures and clinical practice; therapist skill with patients with active substance use; therapist burnout; and dissemination of study findings. Some recommendations positively impact study conduct while others had mixed impact. Reflections were iterative and led to emergent processes that included revisiting previously discussed topics, cross-pollination of ideas across panels, and sparking solutions amongst the Team when the panels did not make any recommendations or recommendations were not feasible. CONCLUSIONS: When paired with end-user engagement methods, brief reflections can facilitate systematic examination of end-user input, particularly when the engagement strategy is robust. Reflections offer a forum of accountability for researchers to give careful thought to end-user recommendations and make timely improvements to the study conduct. Reflections can also facilitate evaluation of these recommendations and reveal end-user-driven strategies that can effectively improve study conduct. TRIAL REGISTRATION: ClinicalTrials.gov (NCT04581434) on October 9, 2020; https://clinicaltrials.gov/ct2/show/study/NCT04581434?term=NCT04581434&draw=2&rank=1 .


Assuntos
Transtornos de Estresse Pós-Traumáticos , Transtornos Relacionados ao Uso de Substâncias , Veteranos , Humanos , Transtornos de Estresse Pós-Traumáticos/terapia , Transtornos de Estresse Pós-Traumáticos/psicologia , Transtornos Relacionados ao Uso de Substâncias/terapia , Transtornos Relacionados ao Uso de Substâncias/psicologia , Veteranos/psicologia , Veteranos/estatística & dados numéricos , United States Department of Veterans Affairs/estatística & dados numéricos , Psicoterapia/métodos , Estados Unidos , Participação do Paciente/métodos , Participação do Paciente/estatística & dados numéricos , Participação do Paciente/psicologia , Projetos de Pesquisa
5.
Arch Dermatol Res ; 316(6): 226, 2024 May 24.
Artigo em Inglês | MEDLINE | ID: mdl-38787442

RESUMO

The inclusion of participants from underrepresented and underserved groups is lagging in dermatology clinical trials. Through dissemination of a pilot survey at a community skin health fair, knowledge, participation, and perspectives of clinical trials were evaluated in an urban, medically underserved community in Washington, DC. Clinical trial-related questions were derived from the Health Information National Trends Survey 5 Cycle 4. This cross-sectional survey analyzed responses from 39/55 attendees (71% response rate). Most respondents were female (23/37 [62.2%]), between the ages of 25 and 54 (19/38, [50.0%]), and self-identified as non-white (35/39 [89.7%]) with a majority self-identifying as Black (16/31 [41%]). Most respondents self-reported knowing "little" to "nothing" about clinical trials (26/35 [74.3%]), and even more were unaware of the federal resource clinicaltrials.gov (30/37 [81.1%]). Few respondents discussed clinical trials as a treatment option with their healthcare provider (8/35 [22.9%]), yet having a discussion was significantly correlated with clinical trial participation (p = 0.0302). Self-reported level of knowledge was not significantly associated with participation in a clinical trial (p = 0.3035). Healthcare providers were the preferred first source of clinical trial information, followed by an internet search. Respondents rarely cited mistrust or skepticism as a barrier to participation (2/34 [5.9%]). Subjective positive healthcare experiences were significantly correlated to positive expectations with clinical trial participation (p = 0.0242). The findings of this study suggest the essential role healthcare providers, including dermatologists, play in clinical trial education and recruitment of underrepresented populations, and that patient mistrust may be present but is a rarely cited barrier to clinical trial participation.


Assuntos
Ensaios Clínicos como Assunto , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Estudos Transversais , Feminino , District of Columbia , Adulto , Pessoa de Meia-Idade , Masculino , Área Carente de Assistência Médica , Inquéritos e Questionários/estatística & dados numéricos , Dermatologia/estatística & dados numéricos , Participação do Paciente/estatística & dados numéricos , Participação do Paciente/psicologia , Seleção de Pacientes , Adulto Jovem
7.
JAMA Netw Open ; 7(5): e2411649, 2024 May 01.
Artigo em Inglês | MEDLINE | ID: mdl-38748420

RESUMO

Importance: Patient portals are increasingly used for patient-clinician communication and to introduce interventions aimed at improving blood pressure control. Objective: To characterize patient portal use among patients with hypertension managed in primary care. Design, Settings, and Participants: This retrospective cohort study used electronic health records linked with patient portal log file data from a large, diverse Midwestern health care system. Patients with hypertension who had a primary care visit from January 1, 2021, to December 31, 2021, were included. The first visit in 2021 was considered the baseline visit; patient portal engagement was evaluated during the following year. Multivariate logistic regressions, presented as odds ratios (ORs) and 95% CIs, were used to evaluate associations between patient characteristics and patient portal engagement, adjusting for potential confounders. Exposures: Primary exposures included 4 sociodemographic factors routinely collected in the electronic health record: race and ethnicity, insurance, preferred language, and smoking status. Main Outcomes and Measures: Indicators of patient engagement with the patient portal included accessing the patient portal at least once, accessing the portal within 7 days of at least 50.0% of primary care physician (PCP) visits, frequent logins (<28 vs ≥28), messaging (<2 vs ≥2), and sharing home blood pressure readings. Results: Among 366 871 patients (mean [SD], 63.5 [12.6] years), 52.8% were female, 3.4% were Asian, 7.8% were Hispanic, 19.7% were non-Hispanic Black, 66.9% were non-Hispanic White, and 2.3% were of other race or ethnicity. During the 1-year study period starting in 2021, 70.5% accessed the patient portal at least once, 60.2% accessed around the time of their PCP visits, 35.7% accessed the portal frequently, 28.9% engaged in messaging, and 8.7% shared home blood pressure readings. Compared with White patients, non-Hispanic Black and Hispanic patients had lower odds of any access (Black: OR, 0.53; 95% CI, 0.52-0.54; Hispanic: OR, 0.66; 95% CI, 0.64-0.68), access around PCP visit time (Black: OR, 0.49; 95% CI, 0.48-0.50; Hispanic: OR, 0.62; 95% CI, 0.60-0.64), frequent access (Black: OR, 0.56; 95% CI, 0.55-0.57; Hispanic: OR, 0.71; 95% CI, 0.69-0.73), and messaging (Black: OR, 0.63; 95% CI, 0.61-0.64); Hispanic: OR, 0.71; 95% CI, 0.69-0.73). Conclusions and Relevance: This cohort study of patients with hypertension found clear sociodemographic disparities in patient portal engagement among those treated in primary care. Without special efforts to engage patients with portals, interventions that use patient portals to target hypertension may exacerbate disparities.


Assuntos
Hipertensão , Portais do Paciente , Atenção Primária à Saúde , Humanos , Masculino , Feminino , Hipertensão/tratamento farmacológico , Atenção Primária à Saúde/estatística & dados numéricos , Portais do Paciente/estatística & dados numéricos , Pessoa de Meia-Idade , Estudos Retrospectivos , Idoso , Disparidades em Assistência à Saúde/estatística & dados numéricos , Adulto , Participação do Paciente/estatística & dados numéricos , Registros Eletrônicos de Saúde/estatística & dados numéricos
8.
Int J Med Inform ; 188: 105481, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38776718

RESUMO

OBJECTIVE: Study the efficacy of digital health interventions in enhancing patient activation and identify the distinct features of these interventions using the WHO classification system. METHODS: Asystematic reviewand meta-analysis were carried out according to the PRISMA guidelines. A search was conducted in Scopus, PubMed, and ProQuest. Randomized controlled trials (RCT), quasi-randomized controlled trials, and before-and-after studies enrolling patients ≥ 18 years of age with the Patient Activation Measure (PAM) score measurement and contain digital intervention with any aspects of health education or health-related behavior were included. The Downs and Black quality assessment tool was used to assess the quality of the articles. RESULTS: In the three different types of meta-analyses, implementing the intervention led to a PAM score increase (Mean Difference (M.D.)), ranging from a minimum of (MD = 0.2014, 95 % CI = 0.0871-0.3158) and a highly significant p-value 0.0006 to a maximum of (MD = 2.7882, 95 % CI = 1.5558-4.0206) and a p-value < .0001. While the M.D. score of 0.2014 may seem relatively low, it is enough to elevate the patient from one activation level to a higher one out of the four activation levels. CONCLUSION AND PRACTICE IMPLICATIONS: The results suggest the effectiveness of digital health interventions on patient activation across diverse settings and contexts, implying potential generalizability. Using WHO classification, all examined digital interventions addressed the challenges of information, utilization, and efficiency in the health system, but not equity-related challenges. The study recognized online health communities (OHCs) as a subset of digital interventions that enhance patient activation through social support.


Assuntos
Participação do Paciente , Humanos , Comportamentos Relacionados com a Saúde , Participação do Paciente/estatística & dados numéricos , Telemedicina
9.
J Clin Epidemiol ; 170: 111356, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38604271

RESUMO

OBJECTIVES: To investigate the frequency, determinants, stages, and barriers of patient and public involvement (PPI) in systematic reviews and to explore its association with the dissemination of reviews. STUDY DESIGN AND SETTING: We examined systematic reviews that required the inclusion of a PPI declaration, published in The BMJ between January 1, 2015, and December 31, 2022. Multivariable analysis was used to assess the association between PPI and key variables. We investigated the association between PPI and the dissemination of reviews using Altmetric scores, citations, and full-text views. RESULTS: A total of 217 systematic reviews were included, of which 56 (25.8%, 95% CI 20.0%-31.6%) included PPI, with a steady increase from 5.9% (1/17) in 2015 to 44.4% (4/35) in 2022. Of the 217 systematic reviews, 160 (73.7%) involved methodologists as co-authors. Factors significantly associated with a higher proportion of PPI included the publication year after 2019 (adjusted odds ratio [aOR] 2.46, 95% CI 1.26-4.83), the involvement of methodologist (aOR 3.08; 95% CI 1.27-7.47), and being led by researchers from high-income countries (aOR 5.47; 95% CI 1.23-24.30). Reviews that included PPI had higher Altmetric scores per month (6.6 vs 3.4, P = .002) and more monthly full-text (1048.6 vs 636.5, P < .001) and PDF (217.7 vs 129.0, P < .001) views than reviews without PPI. However, there was no difference in the monthly citations (2.2 vs 2.0, P = .365) between reviews with and without PPI. CONCLUSION: The proportion of systematic reviews reporting PPI in The BMJ has increased over time, possibly due to journal policies, but it still remains at a low level. Reviews led by researchers from high-income countries or involving methodologists are associated with a higher frequency of PPI within The BMJ. Furthermore, reviews incorporating PPI within The BMJ have a higher potential for broad dissemination.


Assuntos
Disseminação de Informação , Participação do Paciente , Revisões Sistemáticas como Assunto , Humanos , Revisões Sistemáticas como Assunto/métodos , Participação do Paciente/estatística & dados numéricos , Disseminação de Informação/métodos , Participação da Comunidade/estatística & dados numéricos
10.
Eur J Oncol Nurs ; 70: 102574, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38643680

RESUMO

PURPOSE: To assess information and communication priorities of patients and healthcare professionals in Shared Decision Making about adjuvant systemic treatment of primary breast cancer and identify key decision-relevant information accordingly. METHODS: Patients (N = 122) and professionals working with breast cancer patients (N = 118), of whom 38 were nurse practitioners and 32 nurses, were recruited using convenience sampling, and surveyed about information/communication aspects key to decision-making, using ranking assignments. We further posed a simple open question, questions about receiving population-based statistics versus personalized statistics concerning treatment outcomes, and their attitude and experience concerning Shared Decision Making. Data were analyzed using descriptive analysis and a qualitative analysis. RESULTS: Both patients and professionals prioritized information about treatment outcomes (i.e., survival, recurrence) as key decision-relevant information for patients. Patients prioritized information about relatively severe treatment side-effects and late effects (e.g., blood clot, stroke), whilst professionals prioritized information about effects that occur relatively often (e.g., hair loss, fatigue). Patients specifically wanted to know if the benefit of treatment is worth the negative impact. Both groups prioritized personalized statistics over population-based statistics. CONCLUSIONS: Some differences between patients and professionals were found in information and communication priorities, specifically related to the different side-effects. It seems worthwhile to precisely address these side-effects in Shared Decision Making concerning adjuvant systemic treatment. Furthermore, it seems important to deliberate together on the question if expected benefit of treatment is worth the potential negative impact for the individual patient.


Assuntos
Neoplasias da Mama , Tomada de Decisão Compartilhada , Participação do Paciente , Humanos , Neoplasias da Mama/tratamento farmacológico , Feminino , Pessoa de Meia-Idade , Adulto , Idoso , Participação do Paciente/estatística & dados numéricos , Inquéritos e Questionários , Quimioterapia Adjuvante , Comunicação , Tomada de Decisões , Atitude do Pessoal de Saúde , Masculino
11.
Ann Epidemiol ; 94: 1-8, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38609024

RESUMO

BACKGROUND: Data collection by mailing questionnaires to the study population is one of the main research methods in epidemiologic studies. As participation rates are decreasing, easy-to-implement and cost-effective strategies to increase survey participation are needed. In this study, we tested the effect of a pragmatic combination of evidence-based interventions. METHODS: We conducted a two-armed randomized controlled trial, nested in a cohort of breast cancer survivors (n = 1000) in the setting of a health outcomes survey. The intervention arm received a postal pre-notification, a non-monetary incentive (ballpoint with the study logo) and an alternative invitation letter in which several lay-out and textual adjustments were implemented according to behavioural science techniques. The alternative invitation letter also contained a QR-code through which an information video about the study could be accessed. The control arm was invited according to standard practice. Participants had the option to fill-out a questionnaire either on paper or online. A questionnaire with more than 50% of the questions answered classified as participation. RESULTS: Overall participation rate was 62.9%. No significant difference in participation rate was observed between intervention and control arm (64.5% vs 61.3%, Risk Ratio (RR) 1.05, 95% CI [0.96 - 1.16]). Older age at study (>65 vs <51 years), and high socio-economic status (highest vs lowest quartile) were associated with higher participation rates (RR 1.30, 95% CI [1.07 - 1.57] and 1.24, 95% CI [1.09 - 1.42] respectively). In-situ carcinoma compared to invasive cancer and longer interval since treatment were associated with lower participation (RR 0.86, 95% CI [0.74 - 0.99] and RR 0.92, 95% CI [0.87 - 0.99] per 5 year increase, respectively). CONCLUSION: Overall, the combination of four interventions tested in this study did not improve survey participation among breast cancer survivors. The overall participation rate was relatively high, possibly due to the study population of cancer survivors.


Assuntos
Neoplasias da Mama , Sobreviventes de Câncer , Humanos , Feminino , Pessoa de Meia-Idade , Sobreviventes de Câncer/estatística & dados numéricos , Idoso , Inquéritos e Questionários , Adulto , Serviços Postais , Participação do Paciente/estatística & dados numéricos
12.
Int J Nurs Stud ; 154: 104751, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38642474

RESUMO

BACKGROUND: Improving patient activation may be an effective way to reduce healthcare costs and improve patient outcomes after surgery. OBJECTIVE: To determine whether preoperative patient activation is associated with delayed discharge (i.e., length of stay >24 h) after elective laparoscopic cholecystectomy. Postoperative symptoms, unscheduled access to healthcare facilities within seven days of surgery, unplanned hospital readmissions, and postoperative complications were analyzed as secondary outcomes. DESIGN: This cohort study was a secondary analysis of the DeDiLaCo study (Delayed Discharge after day-surgery Laparoscopic Cholecystectomy) collecting data of patients undergoing elective laparoscopic cholecystectomy during 2021 in Italy. Data was analyzed from June 2022 to April 2023. SETTING: 90 Italian surgical centers participating in the study. PARTICIPANTS: 4708 adult patients with an instrumental diagnosis of gallbladder disease and undergoing laparoscopic cholecystectomy. Patient activation was assessed using the Italian translation of Patient Activation Measure in the preoperative setting. RESULTS: Of 4532 cases analyzed the median (IQR) Patient Activation Measure score was 80.3 (71.2-92.3). Participants were on average 55.5 years of age and 58.1 % were female. Two groups based on the activation level were created: 270 (6 %) had low activation, and 4262 had high activation. The low activation level was associated with the likelihood of delayed discharge (odds ratio [OR] 1.47, 95 % CI, 1.11-1.95; P = .008), higher symptom burden (OR 1.99, 95 % CI 1.49-2.66, P < .0001), and unplanned healthcare utilization within seven days after hospital discharge (OR 1.85, 95 % CI, 1.29-2.63; P = .001). There was no difference between the high and low activation groups in the incidence of postoperative complications (OR 1.28, 95 % CI, 0.95-1.73; P = .10) and hospital readmission after discharge (OR 0.95, 95 % CI, 0.30-3.05; P = .93). CONCLUSIONS: Our results suggest that patients with low activation have 1.47 times the risk of delayed discharge compared with patients with higher activation, almost twice the risk of the onset of postoperative symptoms, and 1.85 times the risk of unscheduled use of hospital services. Screening for patient activation in the preoperative setting could not only identify patients not suitable for early discharge, but more importantly, help physicians and nurses develop tailored interventions.


Assuntos
Colecistectomia Laparoscópica , Procedimentos Cirúrgicos Eletivos , Alta do Paciente , Humanos , Feminino , Pessoa de Meia-Idade , Masculino , Estudos Prospectivos , Itália , Participação do Paciente/estatística & dados numéricos , Estudos de Coortes , Adulto , Idoso
13.
J Dtsch Dermatol Ges ; 22(6): 775-781, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38656802

RESUMO

BACKGROUND AND OBJECTIVES: Due to increasing skin cancer incidence, Germany implemented a statutory nationwide routine skin cancer screening (rSCS) in 2008. The present study aims (1) to analyze which patient factors are associated with the participation in rSCS in Germany and (2) to investigate reasons for nonparticipation. PATIENTS AND METHODS: Participants and nonparticipants of rSCS (≥ 35 years) were recruited in routine care in nine dermatological outpatient clinics. Reasons for (non-)participation, knowledge about skin cancer as well as clinical and socioeconomic data were obtained. Stratified by groups, descriptive analyses and binary logistic regression analyses for associations with participation were performed. RESULTS: Of the 294 rSCS participants and 162 non-participants, 46.5% were male with a mean age of 54.5 ± 12.7 years. In total, 87.1% had sunburns in childhood and 47.1% used sunbeds before. Higher age, female gender, previous sunbed use, and concern for and knowledge of skin cancer were significantly associated with previous rSCS participation. Of the non-participants, 46% were unaware of the option for free rSCS and 40% justified their nonparticipation on the basis of feeling healthy. CONCLUSIONS: The reasons for nonparticipation in rSCS, such as sociodemographic characteristics and risk behavior, should be known in order to optimize rSCS programs.


Assuntos
Detecção Precoce de Câncer , Neoplasias Cutâneas , Humanos , Neoplasias Cutâneas/epidemiologia , Neoplasias Cutâneas/diagnóstico , Alemanha/epidemiologia , Masculino , Feminino , Pessoa de Meia-Idade , Adulto , Participação do Paciente/estatística & dados numéricos , Idoso , Conhecimentos, Atitudes e Prática em Saúde , Fatores de Risco , Queimadura Solar/epidemiologia , Queimadura Solar/prevenção & controle , Banho de Sol/estatística & dados numéricos , Banho de Sol/legislação & jurisprudência
14.
J Clin Oncol ; 42(18): 2139-2148, 2024 Jun 20.
Artigo em Inglês | MEDLINE | ID: mdl-38564681

RESUMO

PURPOSE: National estimates of cancer clinical trial participation are nearly two decades old and have focused solely on enrollment to treatment trials, which does not reflect the willingness of patients to contribute to other elements of clinical research. We determined inclusive, contemporary estimates of clinical trial participation for adults with cancer using a national sample of data from the Commission on Cancer (CoC). METHODS: The data were obtained from accreditation information submitted by the 1,200 CoC programs, which represent more than 70% of all cancer cases diagnosed in the United States each year. Deidentified, institution-level aggregate counts of annual enrollment to treatment, biorepository, diagnostic, economic, genetic, prevention, quality-of-life (QOL), and registry studies were examined. Overall, study-type estimates for the period 2013-2017 were estimated. Multiple imputation by chained equations was used to account for missing data, with summary estimates calculated separately by type of program (eg, National Cancer Institute [NCI]-designated cancer centers) and pooled. RESULTS: The overall estimated patient participation rate to cancer treatment trials was 7.1%. Patients with cancer participated in a wide variety of other studies, including biorepository (12.9%), registry (7.3%), genetic (3.6%), QOL (2.8%), diagnostic (2.5%), and economic (2.4%) studies. Treatment trial enrollment was 21.6% at NCI-designated comprehensive cancer centers, 5.4% at academic (non-NCI-designated) comprehensive cancer programs, 5.7% at integrated network cancer programs, and 4.1% at community programs. One in five patients (21.9%) participated in one or more cancer clinical research studies. CONCLUSION: In a first-time use of national accreditation information from the CoC, enrollment to cancer treatment trials was 7.1%, higher than historical estimates of <5%. Patients participated in a diverse set of other study types. Contributions of adult patients with cancer to clinical research is more common than previously understood.


Assuntos
Acreditação , Ensaios Clínicos como Assunto , Neoplasias , Participação do Paciente , Humanos , Neoplasias/terapia , Estados Unidos , Participação do Paciente/estatística & dados numéricos , Ensaios Clínicos como Assunto/estatística & dados numéricos , Seleção de Pacientes , Adulto , Pesquisa Biomédica , Feminino , Masculino , Sistema de Registros , Qualidade de Vida
15.
J Am Geriatr Soc ; 72(6): 1717-1727, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38485469

RESUMO

BACKGROUND: Older adults with multimorbidity are under-represented in clinical drug trials. Their inclusion will not increase unless they are willing and able to participate. Data on motivators and barriers to participation in trials of new medications of older adults with multimorbidity are needed. METHODS: Cross-sectional internet and telephone survey of a nationally representative sample of adults ≥65 years with ≥3 chronic conditions (NORC University of Chicago Amerispeak Panel) conducted from March-April, 2023 to determine motivators and barriers to drug trial participation, described graphically and using statistics. RESULTS: Surveyed 1318 (1142 Internet, 176 phone) with mean age 72.3 ± 6.3 (SD), 52% women; race: 83% White, 10% Black or African American, 5% Hispanic or Latino, 1.1% Asian; 4.4 ± 1.9 chronic conditions (of 16 queried), taking 7.5 ± 3.3 medications. Barriers included fear of side effects (48%), taking too many medications (44%), placebo (44%), mobility (33%), bathroom needs (25%), hearing (19%), eyesight (15%), video visits (33%; higher in women, Black or African-American respondents, and those ≥80 years). Sixty-five percent would join all in-person trials, 49% would join all-video trials. Travel >1 h was difficult for 66%, most difficult for women. Trust was a concern in 25% of Black respondents. Caregiving responsibilities or lack of time were not obstacles. Participants were most likely to consider a drug trial for a problem they have (63%) versus prevention (44%) and if invited by a physician (80%) or University healthcare system (58%). Getting better care was ranked very important (79%) followed by helping others (57%). CONCLUSIONS: Major concerns of older patients with multimorbidity about participation in drug trials are potential side effects, taking too many medicines, and video visits. Physicians have the greatest influence on decisions and in-person visits are preferred. Proposed changes in trial design to increase enrollment of under-represented older adults may not align with patient-reported preferences.


Assuntos
Ensaios Clínicos como Assunto , Multimorbidade , Humanos , Feminino , Idoso , Masculino , Estudos Transversais , Inquéritos e Questionários , Motivação , Estados Unidos , Doença Crônica/tratamento farmacológico , Idoso de 80 Anos ou mais , Participação do Paciente/psicologia , Participação do Paciente/estatística & dados numéricos
16.
J Cardiopulm Rehabil Prev ; 44(3): 180-186, 2024 May 01.
Artigo em Inglês | MEDLINE | ID: mdl-38373064

RESUMO

PURPOSE: Patient- and disease-specific data on cardiac rehabilitation (CR) participation and changes over time are limited. The objective of this study was to describe time trends in CR participation between 2013 and 2019 and provides insights into the utilization of CR components. METHODS: Patients with cardiovascular disease (CVD) with an indication for CR were enrolled between 2013 and 2019. Dutch health insurance claims data were used to identify CR participation and its components. RESULTS: In total, 106 212 patients with CVD were included of which 37% participated in CR. Participation significantly increased from 28% in 2013 to 41% in 2016 but remained unchanged thereafter. Participation was highest in the youngest age groups (<50 yrs 52%; 50-65 yrs 50%), men (48%), patients with ST-segment elevation myocardial infarction (73%), non-ST-segment elevation myocardial infarction (59%), and coronary artery bypass grafting (82%). In contrast, it was the lowest in the oldest age group (≥85 yrs 8%), women (30%), and in patients with heart failure (11%). Most participants in CR received referral plus an admission session (97%) and exercise training (82%), whereas complementary services related to dietary (14%) and mental health counseling (10%) had a low utilization. CONCLUSIONS: CR participation rates increased to 41% in 2016 but remained unchanged thereafter. Participation modulators included age, sex, CVD diagnosis, and undergoing a cardiothoracic procedure. Education and exercise sessions were frequently adopted, but dietary and mental health counseling had a low utilization rate. These findings suggest the need for reinvigorated referral and novel enrollment strategies in specific CVD subgroups to further promote CR participation and its associated underutilized adjunctive services.


Assuntos
Reabilitação Cardíaca , Humanos , Feminino , Reabilitação Cardíaca/estatística & dados numéricos , Reabilitação Cardíaca/tendências , Reabilitação Cardíaca/métodos , Masculino , Pessoa de Meia-Idade , Países Baixos , Idoso , Idoso de 80 Anos ou mais , Estudos de Coortes , Participação do Paciente/estatística & dados numéricos , Adulto , Doenças Cardiovasculares/epidemiologia , Terapia por Exercício/métodos , Terapia por Exercício/estatística & dados numéricos
17.
J Am Pharm Assoc (2003) ; 64(3): 102025, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38320653

RESUMO

BACKGROUND: Patients' level of medication adherence provides conflicting results in its relationship to patient activation. Multiple factors may be contributing to these mixed results. OBJECTIVES: The primary purpose was to assess the association of patient activation to medication adherence in adults with chronic health conditions and low health literacy (HL). Secondary objectives were to determine whether age, education, gender, and race were associated with activation. METHODS: Participants completed self-report questionnaires regarding chronic disease self-management. Patient activation was measured using Hibbard's Patient Activation Measure (PAM). Self-report of medication adherence was determined using the Gonzalez-Lu adherence questionnaire. Block regressions first assessed the relation of demographic variables and education to adherence and then the added relation of patient activation in a second model. RESULTS: The analyses included 301 participants (mean age 58 years; 53% female; mean chronic conditions of 6.6). Some of the most common chronic conditions included hypertension (60%), arthritis (51%), depression (49%), and hyperlipidemia (43%). The relation of older age to greater medication adherence was significant (P < 0.05) in both models. The addition of PAM was significantly related to better adherence (P < 0.001) and also increased the R squared value from 0.04 to 0.09. This change resulted in a moderate effect size (d = 0.50). CONCLUSION: Evaluating patient activation at baseline may predict those more likely to be medication adherent in patients with low HL.


Assuntos
Letramento em Saúde , Adesão à Medicação , Autorrelato , Humanos , Feminino , Adesão à Medicação/estatística & dados numéricos , Masculino , Pessoa de Meia-Idade , Doença Crônica/tratamento farmacológico , Idoso , Inquéritos e Questionários , Adulto , Participação do Paciente/estatística & dados numéricos , Fatores Etários , Autogestão
18.
Am J Surg ; 233: 78-83, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38383163

RESUMO

BACKGROUND: Patient engagement technologies (PETs) guide patients through the perioperative period. We aimed to investigate the levels of patient engagement with PETs through the peri-operative period and its impact on clinical outcomes. METHODS: Retrospective cohort study of patients undergoing elective colorectal surgery from 2018 to 2022. Outcomes were length of stay, readmissions, and complications within 30 days of index hospitalization. RESULTS: 359 (89.1%) patients activated the PET. Patients completed a median of 7 surveys, 2 in-hospital health-checks, and 1 post-discharge health-check. Median LOS was 3 days, 57 (14.1%) patients were readmitted, and 56 (13.9%) had a complication. Patients who completed no surveys had longer LOS than those who completed 2 or more. Patients who were readmitted and had post-operative complications completed significantly fewer surveys and post-discharge health-checks. Completion of surveys in more phases was associated with shorter LOS and lower readmission rates. Completion of more post-discharge health-checks was associated with lower complication rate. CONCLUSIONS: The use of PETs improves patient outcomes and experiences in the perioperative period. Patients who engage more frequently with PETs have shorter LOS with lower readmission and post-operative complication rates.


Assuntos
Tempo de Internação , Participação do Paciente , Readmissão do Paciente , Complicações Pós-Operatórias , Humanos , Feminino , Masculino , Estudos Retrospectivos , Pessoa de Meia-Idade , Idoso , Readmissão do Paciente/estatística & dados numéricos , Tempo de Internação/estatística & dados numéricos , Participação do Paciente/estatística & dados numéricos , Complicações Pós-Operatórias/epidemiologia , Procedimentos Cirúrgicos Eletivos , Cirurgia Colorretal , Adulto
20.
BMC Public Health ; 23(1): 2060, 2023 10 20.
Artigo em Inglês | MEDLINE | ID: mdl-37864242

RESUMO

BACKGROUND: The National Institutes of Health has advocated for improved minority participation in clinical research, including clinical trials and observational epidemiologic studies since 1993. An understanding of Mexican Americans (MAs) participation in clinical research is important for tailoring recruitment strategies and enrollment techniques for MAs. However, contemporary data on MA participation in observational clinical stroke studies are rare. We examined differences between Mexican Americans (MAs) and non-Hispanic whites (NHWs) participation in a population-based stroke study. METHODS: We included 3,594 first ever stroke patients (57.7% MAs, 48.7% women, median [IQR] age 68 [58-79]) from the Brain Attack Surveillance in Corpus Christi Project, 2009-2020 in Texas, USA, who were approached and invited to participate in a structured baseline interview. We defined participation as completing a baseline interview by patient or proxy. We used log-binomial models adjusting for prespecified potential confounders to estimate prevalence ratios (PR) of participation comparing MAs with NHWs. We tested interactions of ethnicity with age or sex to examine potential effect modification in the ethnic differences in participation. We also included an interaction between year and ethnicity to examine ethnic-specific temporal trends in participation. RESULTS: Baseline participation was 77.0% in MAs and 64.2% in NHWs (Prevalence Ratio [PR] 1.20; 95% CI, 1.14-1.25). The ethnic difference remained after multivariable adjustment (1.17; 1.12-1.23), with no evidence of significant effect modification by age or sex (Pinteraction by age = 0.68, Pinteraction by sex = 0.83). Participation increased over time for both ethnic groups (Ptrend < 0.0001), but the differences in participation between MAs and NHWs remained significantly different throughout the 11-year time period. CONCLUSION: MAs were persistently more likely to participate in a population-based stroke study in a predominantly MA community despite limited outreach efforts towards MAs during study enrollment. This finding holds hope for future research studies to be inclusive of the MA population.


Assuntos
Estudos Clínicos como Assunto , Americanos Mexicanos , Acidente Vascular Cerebral , Brancos , Idoso , Feminino , Humanos , Masculino , Etnicidade , Americanos Mexicanos/estatística & dados numéricos , Fatores de Risco , Acidente Vascular Cerebral/epidemiologia , Acidente Vascular Cerebral/etnologia , Texas/epidemiologia , Brancos/estatística & dados numéricos , População Branca , Estudos Clínicos como Assunto/estatística & dados numéricos , Seleção de Pacientes , Pessoa de Meia-Idade , Participação do Paciente/estatística & dados numéricos
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