ABSTRACT
Pharmacist-led interventions are pivotal in identifying and resolving potential adverse drug events (pADEs) while enhancing blood pressure control and medication adherence through educational and counseling interventions. This practice brief outlines the outcomes of the Blue Bag Initiative (BBI), which enhanced pharmacist-led comprehensive medication reviews (CMRs) across community pharmacies in Virginia under Center for Disease Control Cooperative Agreement NU58DP006535. BBI yielded a rate of 131.6 pADEs identified per 100 participants and demonstrated cost savings of 1 to 3 million dollars for the health care system. This report underscores the significance of a standardized, pharmacist-led CMR as integral to interdisciplinary team-based care models within physician practices, facilitating medication therapy management implementation. Enhanced CMR can improve cardiovascular health outcomes while reducing health care expenditures by augmenting patient engagement and medication adherence. This study thus highlights the efficacy and potential of pharmacist-led interventions in increasing access to and optimizing patient care.
Subject(s)
Cost Savings , Patient Participation , Humans , Cost Savings/methods , Cost Savings/statistics & numerical data , Patient Participation/methods , Patient Participation/statistics & numerical data , Virginia , Pharmacists/statistics & numerical data , Medication Adherence/statistics & numerical data , Drug-Related Side Effects and Adverse Reactions/prevention & control , Medication Therapy Management/economicsABSTRACT
In this pilot study, the authors investigated the preliminary effectiveness of the digital lifestyle intervention, actensio (mementor DE GmbH), in treating arterial hypertension. Adults with arterial hypertension were randomly assigned to an intervention group (actensio + standard care) or a control group (waiting list + standard care) in a 1:1 ratio. Primary and secondary endpoints were assessed at baseline (t0) and 3 months post-randomization (t1). The primary endpoint was average systolic blood pressure, measured at home for 1 week. Secondary endpoints included patient engagement (measured using the "patient activation measure"; PAM-13), average diastolic blood pressure, and heart rate. All endpoints were analyzed using ANCOVA models, following an intention-to-treat approach, while adjusting for baseline values. Missing data were estimated using multiple imputation models. A total of N = 102 participants (f = 59, age = 52.94 ± 9.01) were randomized to either the intervention (IG; N = 52) or the control group (CG; N = 50), of which N = 80 completed the blood pressure diary, and N = 81 the PAM-13 at t1. Between-group comparisons showed an average group difference in systolic blood pressure of -5.06 mm Hg (95% CI = -8.71 to -1.41, p = .013) between the intervention group (M = 137.37 ± 10.13) and the control group (M = 142.35 ± 11.23). Average group difference for patient engagement was 3.35 points with a trend towards statistical significance (95% CI = -018 to 6.89, p = .064), favoring the intervention group (MIG = 79.38 ± 9.44 vs. MCG = 75.45 ± 10.62). There were no group differences in diastolic blood pressure (-1.78 mm Hg; 95% CI = -4.50 to 0.95, p = .402) and heart rate (-0.684; 95% CI = -3.73 to 2.36, p = 0.683). The results of the present pilot study confirm the preliminary effectiveness of the digital lifestyle intervention, actensio, in reducing high blood pressure in patients with hypertension.
Subject(s)
Blood Pressure , Hypertension , Humans , Male , Female , Hypertension/therapy , Hypertension/physiopathology , Hypertension/epidemiology , Middle Aged , Pilot Projects , Blood Pressure/physiology , Adult , Life Style , Heart Rate/physiology , Treatment Outcome , Patient Participation/methods , Patient Participation/statistics & numerical dataABSTRACT
Aim: To identify factors associated with willingness to participate in a COVID-19 clinical trial and reasons for and against participating. Materials & methods: We surveyed Massachusetts (MA, USA) residents online using the Dynata survey platform and via phone using random digit dialing between October and November 2021. Respondents were asked to imagine they were hospitalized with COVID-19 and invited to participate in a treatment trial. We assessed willingness to participate by asking, "Which way are you leaning" and why. We used multivariate logistic regression to model factors associated with leaning toward participation. Open-ended responses were analyzed using conventional content analysis. Results: Of 1071 respondents, 65.6% leaned toward participating. Multivariable analyses revealed college-education (OR: 1.59; 95% CI: 1.11, 2.27), trust in the healthcare system (OR: 1.32; 95% CI: 1.10, 1.58) and relying on doctors (OR: 1.77; 95% CI: 1.45, 2.17) and family or friends (OR: 1.31; 95% CI: 1.11, 1.54) to make health decisions were significantly associated with leaning toward participating. Respondents with lower health literacy (OR: 0.57; 95% CI: 0.36, 0.91) and who identify as Black (OR: 0.40; 95% CI: 0.24, 0.68), Hispanic (OR: 0.61; 95% CI: 0.38, 0.98), or republican (OR: 0.61; 95% CI: 0.38, 0.97) were significantly less likely to lean toward participating. Common reasons for participating included helping others, benefitting oneself and deeming the study low risk. Common reasons for leaning against were deeming the study high risk, disliking experimental treatments and not wanting to be a guinea pig. Conclusion: Our finding that vulnerable individuals and those with lower levels of trust in the healthcare system are less likely to be receptive to participating in a COVID-19 clinical trial highlights that work is needed to achieve a healthcare system that provides confidence to historically disadvantaged groups that their participation in research will benefit their community.
Subject(s)
COVID-19 , Clinical Trials as Topic , Humans , Female , Male , Middle Aged , Adult , Massachusetts , Trust , Surveys and Questionnaires , Aged , SARS-CoV-2 , Patient Participation/statistics & numerical data , Young AdultABSTRACT
BACKGROUND: Patient-driven innovation in health care is an emerging phenomenon with benefits for patients with chronic conditions, such as cystic fibrosis (CF). However, previous research has not examined what may facilitate or hinder the implementation of such innovations from the provider perspective. OBJECTIVE: The aim of this study was to explain variations in the adoption of a patient-driven innovation among CF clinics. METHODS: A comparative multiple-case study was conducted on the adoption of a patient-controlled app to support self-management and collaboration with health care professionals (HCPs). Data collection and analysis were guided by the nonadoption, abandonment, spread, scale-up, and sustainability and complexity assessment tool (NASSS-CAT) framework. Data included user activity levels of patients and qualitative interviews with staff at 9 clinics (n=8, 88.9%, in Sweden; n=1, 11.1%, in the United States). We calculated the maximum and mean percentage of active users at each clinic and performed statistical process control (SPC) analysis to explore how the user activity level changed over time. Qualitative data were subjected to content analysis and complexity analysis and used to generate process maps. All data were then triangulated in a cross-case analysis. RESULTS: We found no evidence of nonadoption or clear abandonment of the app. Distinct patterns of innovation adoption were discernable based on the maximum end-user activity for each clinic, which we labeled as low (16%-23%), middle (25%-47%), or high (58%-95%) adoption. SPC charts illustrated that the introduction of new app features and research-related activity had a positive influence on user activity levels. Variation in adoption was associated with providers' perceptions of care process complexity. A higher perceived complexity of the value proposition, adopter system, and organization was associated with lower adoption. In clinics that adopted the innovation early or those that relied on champions, user activity tended to plateau or decline, suggesting a negative impact on sustainability. CONCLUSIONS: For patient-driven innovations to be adopted and sustained in health care, understanding patient-provider interdependency and providers' perspectives on what generates value is essential.
Subject(s)
Cystic Fibrosis , Telemedicine , Cystic Fibrosis/therapy , Humans , Telemedicine/statistics & numerical data , Sweden , Mobile Applications , United States , Male , Female , Patient Participation/methods , Patient Participation/statistics & numerical dataABSTRACT
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.
Subject(s)
Self Efficacy , Vision Disorders , Humans , Male , Female , Middle Aged , Adult , Vision Disorders/psychology , Patient Participation/statistics & numerical data , Patient Participation/psychology , Aged , Quality of Life , Young Adult , Surveys and QuestionnairesABSTRACT
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.
Subject(s)
Breast Neoplasms , Caregivers , Decision Making , Patient Participation , Humans , Female , Caregivers/psychology , Breast Neoplasms/therapy , Middle Aged , Patient Participation/statistics & numerical data , Aged , Adult , Neoplasm Metastasis , Qualitative ResearchABSTRACT
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 366â¯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.
Subject(s)
Hypertension , Patient Portals , Primary Health Care , Humans , Male , Female , Hypertension/drug therapy , Primary Health Care/statistics & numerical data , Patient Portals/statistics & numerical data , Middle Aged , Retrospective Studies , Aged , Healthcare Disparities/statistics & numerical data , Adult , Patient Participation/statistics & numerical data , Electronic Health Records/statistics & numerical dataABSTRACT
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.
Subject(s)
Patient Participation , Humans , Health Behavior , Patient Participation/statistics & numerical data , TelemedicineABSTRACT
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 .
Subject(s)
Stress Disorders, Post-Traumatic , Substance-Related Disorders , Veterans , Humans , Stress Disorders, Post-Traumatic/therapy , Stress Disorders, Post-Traumatic/psychology , Substance-Related Disorders/therapy , Substance-Related Disorders/psychology , Veterans/psychology , Veterans/statistics & numerical data , United States Department of Veterans Affairs/statistics & numerical data , Psychotherapy/methods , United States , Patient Participation/methods , Patient Participation/statistics & numerical data , Patient Participation/psychology , Research DesignABSTRACT
BACKGROUND: Treatment of (chronic) mental disorders must focus on both reducing symptoms and improving social and work participation by social medicine treatments and counselling. The objective of this study was to compare psychotherapy patients who are fit or unfit for work to describe similarities and differences regarding patient status and interventions. METHODS: Interviews were performed with 73 cognitive behavior therapists and 58 psychodynamic psychotherapists about 188 and 134 recent cases they had seen, respectively. The case reports referred to patients who were on average 42 years old (65% females). RESULTS: There were no differences between patients with no or short-term sick leave (up to 6 weeks, nâ¯= 156) and patients with longer sick leave (7 weeks or more, nâ¯= 140) with respect to basic characteristics of treatment (side effects, therapeutic alliance). Patients with a longer sick leave duration had more severe capacity and participation impairments and received more specific work participation-oriented treatments, whereas general saluto-therapeutic activities (sports-club, counselling, family-support) were similarly undertaken in patients with shorter or longer sick leave. DISCUSSION: Therapists chose intervention options according to indication: in patients with work participation problems, more work-related treatments are undertaken, whereas interventions for general mental health improvement are distributed independent of specific work participation problems.
Subject(s)
Mental Disorders , Psychotherapy , Sick Leave , Humans , Female , Mental Disorders/therapy , Mental Disorders/psychology , Male , Adult , Germany , Sick Leave/statistics & numerical data , Psychotherapy/statistics & numerical data , Middle Aged , Psychotherapists/statistics & numerical data , Patient Participation/statistics & numerical data , Practice Patterns, Physicians'/statistics & numerical data , Treatment OutcomeABSTRACT
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.
Subject(s)
Activities of Daily Living , Hip Fractures , Humans , Hip Fractures/rehabilitation , Female , Male , Aged , Aged, 80 and over , Patient Participation/statistics & numerical data , Recovery of Function , Quality of Life , Treatment OutcomeABSTRACT
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.
Subject(s)
Clinical Trials as Topic , Health Knowledge, Attitudes, Practice , Humans , Cross-Sectional Studies , Female , District of Columbia , Adult , Middle Aged , Male , Medically Underserved Area , Surveys and Questionnaires/statistics & numerical data , Dermatology/statistics & numerical data , Patient Participation/statistics & numerical data , Patient Participation/psychology , Patient Selection , Young AdultABSTRACT
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.
Subject(s)
Breast Neoplasms , Decision Making, Shared , Patient Participation , Humans , Breast Neoplasms/drug therapy , Female , Middle Aged , Adult , Aged , Patient Participation/statistics & numerical data , Surveys and Questionnaires , Chemotherapy, Adjuvant , Communication , Decision Making , Attitude of Health Personnel , MaleABSTRACT
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.
Subject(s)
Breast Neoplasms , Cancer Survivors , Humans , Female , Middle Aged , Cancer Survivors/statistics & numerical data , Aged , Surveys and Questionnaires , Adult , Postal Service , Patient Participation/statistics & numerical dataABSTRACT
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.
Subject(s)
Early Detection of Cancer , Skin Neoplasms , Humans , Skin Neoplasms/epidemiology , Skin Neoplasms/diagnosis , Germany/epidemiology , Male , Female , Middle Aged , Adult , Patient Participation/statistics & numerical data , Aged , Health Knowledge, Attitudes, Practice , Risk Factors , Sunburn/epidemiology , Sunburn/prevention & control , Sunbathing/statistics & numerical data , Sunbathing/legislation & jurisprudenceABSTRACT
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.
Subject(s)
Accreditation , Clinical Trials as Topic , Neoplasms , Patient Participation , Humans , Neoplasms/therapy , United States , Patient Participation/statistics & numerical data , Clinical Trials as Topic/statistics & numerical data , Patient Selection , Adult , Biomedical Research , Female , Male , Registries , Quality of LifeABSTRACT
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.
Subject(s)
Information Dissemination , Patient Participation , Systematic Reviews as Topic , Humans , Systematic Reviews as Topic/methods , Patient Participation/statistics & numerical data , Information Dissemination/methods , Community Participation/statistics & numerical dataABSTRACT
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 >24â¯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 55.5â¯years of age and 58.1â¯% were female. Two groups based on the activation level were created: 270 (6â¯%) 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, 95â¯% CI, 1.11-1.95; Pâ¯=â¯.008), higher symptom burden (OR 1.99, 95â¯% CI 1.49-2.66, Pâ¯<â¯.0001), and unplanned healthcare utilization within seven days after hospital discharge (OR 1.85, 95â¯% CI, 1.29-2.63; Pâ¯=â¯.001). There was no difference between the high and low activation groups in the incidence of postoperative complications (OR 1.28, 95â¯% CI, 0.95-1.73; Pâ¯=â¯.10) and hospital readmission after discharge (OR 0.95, 95â¯% CI, 0.30-3.05; Pâ¯=â¯.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.
Subject(s)
Cholecystectomy, Laparoscopic , Elective Surgical Procedures , Patient Discharge , Humans , Female , Middle Aged , Male , Prospective Studies , Italy , Patient Participation/statistics & numerical data , Cohort Studies , Adult , AgedABSTRACT
BACKGROUND: Treatment decisions in metastatic melanoma (MM) are highly dependent on patient preferences and require the patients' involvement. The complexity of treatment options with their individual advantages and disadvantages is often overwhelming. We therefore developed an online patient decision aid (PtDA) to facilitate shared decision making (SDM). METHODS: To evaluate the PtDA we conducted a two-armed, twocenter, prospective, open randomized controlled trial with MM patients who were facing a decision about first-line treatment. The patients were allotted randomly in a 1:1 ratio to an intervention group (IG) with access to the PtDA before discussion with a physician or to a control group (CG) without access to the PtDA. The primary endpoint was knowledge about the options for first-line treatment (multiple-choice test, 10 items, range 0-40 points). The secondary endpoints were the SDM (third-party ratings of audio recordings of the treatment discussions) and satisfaction with the decision at the follow-up visit. RESULTS: Of the 128 randomized patients, 120 completed the baseline questionnaire and were analyzed (59% male, median age 66 years). The primary endpoint, i.e., the mean difference in knowledge after discussion with a physician, differed significantly between the IG and the CG (-3.22, 95% CI [-6.32; -0.12], p = 0.042). No differences were found for the secondary endpoints, SDM and satisfaction with the decision. The patients in the IG rated the PtDA as very useful. CONCLUSION: The PtDA improved the knowledge of patients with MM about the options for treatment. Both groups were highly satisfied with their treatment decisions. However, additional physician training seems necessary to promote SDM.