Patient-perceived Barriers Research Articles

Patient perspectives and preferences for rehabilitation among people living with frailty and chronic kidney disease: a qualitative evaluation

BackgroundUnderstanding the patient perspective of frailty is critical to offering holistic patient-centred care. Rehabilitation strategies for patients with advanced chronic kidney disease (CKD) and frailty are limited in their ability to overcome patient-perceived barriers to participation, resulting in high rates of drop-out and non-adherence. The aim of this study was to explore patient perspectives and preferences regarding experiences with rehabilitation to inform a CKD/Frailty rehabilitation model.MethodsThis qualitative study involved two focus groups, six individual semi-structured interviews and three caregiver semi-structured interviews with lived experience of advanced kidney disease and frailty. Interviews were recorded, transcribed, and coded for meaningful concepts and analysed using inductive thematic analysis using constant comparative method of data analysis employing Social Cognitive Theory.ResultsSix major themes emerged including accommodating frailty is an act of resilience, exercise is endorsed for rehabilitation but existing programs have failed to meet end-users’ needs. Rehabilitation goals were framed around return to normative behaviours and rehabilitation should have a social dimension, offering understanding for “people like us”. Participants reported on barriers and disruptors to frailty rehabilitation in the CKD context. Participants valued peer-to-peer education, the camaraderie of socialisation and the benefit of feedback for maintaining motivation. Patients undertaking dialysis described the commodity of time and the burden of unresolved symptoms as barriers to participation. Participants reported difficulty envisioning strategies for frailty rehabilitation, maintaining a focus on the immediate and avoidance of future uncertainty.ConclusionsFrailty rehabilitation efforts in CKD should leverage shared experiences, address comorbidity and symptom burden and focus on goals with normative value.

Improving access to inflammatory bowel disease care in Canada: The patient experience.

Canada has one of the highest age-adjusted incidence and prevalence rates of inflammatory bowel disease (IBD). Large patient volumes and limited resources have created challenges concerning the quality of IBD care, but little is known about patients' experiences. This paper aimed to better understand patient-perceived barriers to IBD care. An exploratory qualitative approach was used for this study. Fourteen focus groups (with 63 total participants) were co-facilitated by a researcher and patient research partner across eight Canadian provinces in 2018. Patients diagnosed with IBD (>18 years of age) and their caregivers were purposefully recruited through Crohn's and Colitis Canada, gastroenterology clinics and communities, and national social media campaigns. Focus group sessions were recorded, transcribed, and analyzed using thematic analysis. Most participants self-identified as being white and women. The analysis generated four key themes regarding patient-perceived barriers and gaps in access to IBD care: (1) gatekeepers and their lack of IBD knowledge, (2) expenses and time, (3) lack of holistic care, and (4) care that is not patient-centered. An additional four themes were generated on the topic of patient-perceived areas of health system improvement for IBD care: (1) direct access to care, (2) good care providers, (3) electronic records and passports, and (4) multidisciplinary care or an 'IBD dream team'. This research contributes to the limited global knowledge on patients' experiences accessing IBD care. It is valuable for the development of care plans and policies to target gaps in care. Patients have identified system-level barriers and ideas for improvement, which should be taken into consideration when implementing system redesign and policy change.

Patient-perceived barriers to early initiation of prenatal care at a large, urban federally qualified health center: a mixed-methods study

BackgroundEarly initiation of prenatal care is widely accepted to improve the health outcomes of pregnancy for both mothers and their infants. Identification of the various barriers to entry into care that patients experience may inform and improve health care provision and, in turn, improve the patient’s ability to receive necessary care.AimThis study implements a mixed-methods approach to establish methods and procedures for identifying barriers to early entry to prenatal care in a medically-vulnerable patient population and areas for future quality improvement initiatives.MethodsAn initial chart review was conducted on obstetrics patients that initiated prenatal care after their first trimester at a large federally qualified health center in Brooklyn, NY, to determine patient-specified reasons for delay. A thematic analysis of these data was implemented in combination with both parametric and non-parametric analyses to characterize the population of interest, and to identify the primary determinants of delayed entry.ResultsThe age of patients in the population of interest (n = 169) was bimodal, with a range of 15 – 43 years and a mean of 28 years. The mean gestational age of entry into prenatal care was 19 weeks. The chart review revealed that 8% recently moved to Brooklyn from outside of NYC or the USA. Nine percent had difficulty scheduling an initial prenatal visit within their first trimester. Teenage pregnancy accounted for 7%. Provider challenges with documentation (21%) were noted. The most common themes identified (n = 155) were the patient being in transition (21%), the pregnancy being unplanned (17%), and issues with linkage to care (15%), including no shows or patient cancellations. Patients who were late to prenatal care also differed from their peers dramatically, as they were more likely to be Spanish-speaking, to be young, and to experience a relatively long delay between pregnancy confirmation and entry into care. Moreover, the greatest determinant of delayed entry into care was patient age.ConclusionOur study provides a process for other like clinics to identify patients who are at risk for delayed entry to prenatal care and highlight common barriers to entry. Future initiatives include the introduction of a smart data element to document reasons for delay and use of community health workers for dedicated outreach after no show appointments or patient cancellations.

How multidisciplinary clinics may mitigate socioeconomic barriers to care for chronic limb-threatening ischemia

ObjectiveAlthough multidisciplinary clinics improve outcomes in chronic limb-threatening ischemia (CLTI), their role in addressing socioeconomic disparities is unknown. Our institution treats patients with CLTI at both traditional general vascular clinics and a multidisciplinary Limb Preservation Program (LPP). The LPP is in a minority community, providing expedited care at a single facility by a consistent team. We compared outcomes within the LPP with our institution’s traditional clinics and explored patients’ perspectives on barriers to care to evaluate if the LPP might address them. MethodsAll patients undergoing index revascularization for CLTI from 2014 to 2023 at our institution were stratified by clinic type (LPP or traditional). We collected clinical and socioeconomic variables, including Area Deprivation Index (ADI). Patient characteristics were compared using χ2, Student t, or Mood median tests. Outcomes were compared using log-rank and multivariable Cox analysis. We also conducted semi-structured interviews to understand patient-perceived barriers. ResultsFrom 2014 to 2023, 983 limbs from 871 patients were revascularized; 19.5% of limbs were treated within the LPP. Compared with traditional clinic patients, more LPP patients were non-White (43.75% vs 27.43%; P < .0001), diabetic (82.29% vs 61.19%; P < .0001), dialysis-dependent (29.17% vs 13.40%; P < .0001), had ADI in the most deprived decile (29.38% vs 19.54%; P = .0061), resided closer to clinic (median 6.73 vs 28.84 miles; P = .0120), and had worse Wound, Ischemia, and foot Infection (WIfI) stage (P < .001). There were no differences in freedom from death, major adverse limb event (MALE), or patency loss. Within the most deprived subgroup (ADI >90), traditional clinic patients had earlier patency loss (P = .0108) compared with LPP patients. Multivariable analysis of the entire cohort demonstrated that increasing age, heart failure, dialysis, chronic obstructive pulmonary disease, and increasing WIfI stage were independently associated with earlier death, and male sex was associated with earlier MALE. Ten traditional clinic patients were interviewed via convenience sampling. Emerging themes included difficulty understanding their disease, high visit frequency, transportation barriers, distrust of the health care system, and patient-physician racial discordance. ConclusionsLPP patients had worse comorbidities and socioeconomic deprivation yet had similar outcomes to healthier, less deprived non-LPP patients. The multidisciplinary clinic’s structure addresses several patient-perceived barriers. Its proximity to disadvantaged patients and ability to conduct multiple appointments at a single visit may address transportation and visit frequency barriers, and the consistent team may facilitate patient education and improve trust. Including these elements in a multidisciplinary clinic and locating it in an area of need may mitigate some negative impacts of socioeconomic deprivation on CLTI outcomes.

Identifying Major Barriers to Home Dialysis (The IM-HOME Study): Findings From a National Survey of Patients, Care Partners, and Providers

Rationale & ObjectiveDeveloping strategies to improve home dialysis use requires a comprehensive understanding of barriers. We sought to identify the most important barriers to home dialysis use from the perspective of patients, care partners, and providers. Study DesignThis is a convergent parallel mixed-methods study. Setting & ParticipantsWe convened a seven-member advisory board of patients, care partners, and providers who collectively developed lists of major patient/care partner-perceived barriers and provider-perceived barriers to home dialysis. We used these lists to develop a survey that was distributed to patients, care partners, and providers—through the American Association of Kidney Patients and the National Kidney Foundation. The surveys asked participants to: 1) rank their top three major barriers (quantitative); and 2) describe barriers to home dialysis (qualitative). Analytical ApproachWe compiled a list of the top three patient/care partner-perceived and top three provider-perceived barriers (quantitative) and conducted a directed content analysis of open-ended survey responses (qualitative). ResultsThere were 522 complete responses (233 providers; 289 patients/care partners). The top three patient/care partner-perceived barriers were: fear of performing home dialysis; lack of space; and the need for home-based support. The top three provider-perceived barriers were: poor patient education; limited mechanisms for home-based support staff, mental health, and education; and lack of experienced staff. We identified nine themes through qualitative analysis: limited education; financial disincentives; limited resources; high burden of care; built environment/structure of care delivery that favor in-center hemodialysis; fear and isolation; perceptions of inequities in access to home dialysis; provider perspectives about patients; and patient/provider resiliency. LimitationsThis was an online survey that is subject to non-response bias. ConclusionsThe top three barriers to home dialysis for patient/care partners and providers incompletely overlap, suggesting the need for diverse strategies that simultaneously address patient-perceived barriers at home and provider-perceived barriers in the clinic.

Barriers to Antiplatelet and Statin Adherence Following Major Vascular Intervention

Antiplatelets and statins therapies are associated with improved cardiovascular outcomes following major vascular intervention. Many vascular surgery institutions are reporting improved prescribing rates for aspirin (ASA), P2Y12 antagonists, and statins. Nevertheless, there remains limited publication describing rates and patient-perceived barriers for postoperative adherence. The purpose of this study is to investigate patient nonadherence to antiplatelet and statin therapies following major vascular intervention. A retrospective review of patients who underwent major vascular intervention at a single academic center was performed. The prescribing rates of ASA, P2Y12 antagonists, and statins were reviewed. Postoperative adherence, defined as consistent intake as prescribed, was evaluated at 1, 3, 6, 9, and 12months using electronic documentation of both follow-up clinic appointments and phone call assessments, then corroborated with pharmacy fulfilment records. Patient-reported barriers to medication adherence were also examined. A total of 101 subjects underwent major vascular intervention between January 2020 and July 2020, 98% of whom were discharged on at least 1 antiplatelet or statin agent. Approximately 90% of patients were discharged with ASA, 32% with a P2Y12 antagonist, and 96% with a statin. All patients who maintained adherence up to 6months continued to report adherence at 9 and 12months. Consistent adherence at 12months was documented in 76% of patients on ASA, 81% on P2Y12 antagonism therapy, and 73% on statins. New adverse drug reactions represented the most common barrier to achieving adherence (37% [n=20]). Preoperative therapy with ASA, P2Y12 antagonists, and statins were all independently predictive of postoperative adherence to the same regimen (P≤0.001). The female gender was also associated with higher rates of adherence to postoperative P2Y12 antagonism therapy (P≤0.05). The current prescribing rates for antiplatelet and statin agents are promising, but postoperative nonadherence remains a multifaceted issue.

"Should I Prioritize My Cancer or My Diabetes?": Patient-Perceived Barriers to Co-Managing Cancer and Diabetes Mellitus.

Among patients with cancer, diabetes mellitus (DM) is a prevalent comorbid condition. With an aging population and an increase in the prevalence of cancer and DM, the number of cancer patients with DM will rise. To date, studies have largely focused on understanding the context of cancer and DM co-management from the perspectives of oncology and primary care providers. To better understand the potential barriers to optimal cancer and DM co-management, we conducted 17 semi-structured interviews with DM patients receiving cancer care at New York-Presbyterian Weill Cornell Medical Center outpatient oncology clinics in New York, NY. In total, 53% patients were female, 35% were non-White, and the mean age was 64.75 (SD 11.10) years. We qualitatively analyzed our data and identified the following nine themes: (1) patients develop DM during or after cancer treatment; (2) patients do not know about the possible interactions between DM and cancer treatment; (3) cancer care is prioritized over DM management; (4) severity of DM symptoms drive patients' DM self-management during cancer care; (5) impact of cancer treatment on quality of life; (6) demands from cancer care make DM management more difficult; (7) patients want individualized treatment plans that integrate DM and cancer co-management; (8) need for greater patient activation; (9) lack of patient-centered educational resources on DM management during cancer care. Owing to these results, our findings highlight the need to increase patient engagement by developing and disseminating patient-centered educational resources on cancer and DM to improve self-management practices and patient outcomes.

Determinants of gastric cancer screening attendance in Southeastern China: a cross-sectional study

ObjectivesThis study aimed to identify the determinants of gastric cancer screening attendance among individuals aged 40 years in a region with high gastric cancer in China.DesignAn anonymous, cross-sectional survey was...

Nephrologists’ Perspectives on Home Dialysis Utilization: A National Survey From Israel

Nephrologists’ Perspectives on Home Dialysis Utilization: A National Survey From Israel

Barriers to head and neck cancer care in high-income and low- and middle-income countries: a scoping review

Identify patient-perceived barriers to head and neck cancer care and compare differences in barriers by country income status. Of the 37 articles, 51% ( n = 19) were from low- and middle-income countries (LMICs), while 49% ( n = 18) were from high-income countries. Of the papers from high-income countries, unspecified head and neck cancer (HNC) subtype (67%, n = 12) were the most common cancer type, while upper aerodigestive tract mucosal malignancies (58%, n = 11) were more common in LMICs ( P = 0.02). Based on World Health Organization barriers, level of education ( P = < 0.01) and alternative medicine use ( P = 0.04) were greater barriers in LMICs compared to high-income countries. At least 50% of articles listed barriers at all three 'Three Delays' timepoints. There were no significant differences by country income status for the 'Three Delays' timepoints of deciding to seek care ( P = 0.23), reaching the healthcare facility ( P = 0.75), or receiving care ( P = 1.00). Patients face barriers to care for head and neck cancer regardless of country income status. There is overlap in several barriers and a need for systemic improvement in access. The differences in education and alternative medicine may guide region-specific interventions to improve the provision of head and neck services.

MP49-02 IDENTIFYING PATIENT-PERCEIVED BARRIERS TO SEEKING AND ACCESSING HEALTHCARE: THE ROLE OF SOCIAL DETERMINANTS OF HEALTH

You have accessJournal of UrologyCME1 Apr 2023MP49-02 IDENTIFYING PATIENT-PERCEIVED BARRIERS TO SEEKING AND ACCESSING HEALTHCARE: THE ROLE OF SOCIAL DETERMINANTS OF HEALTH Dairon Denis-Diaz, Aliza Khuhro, Chase Arnold, Hafsa Asif, Zahra Khuhro, Essa Gul, Omar Alshami, Michael Sourial, Courtenay Moore, Cheryl Lee, and Tasha Posid Dairon Denis-DiazDairon Denis-Diaz More articles by this author , Aliza KhuhroAliza Khuhro More articles by this author , Chase ArnoldChase Arnold More articles by this author , Hafsa AsifHafsa Asif More articles by this author , Zahra KhuhroZahra Khuhro More articles by this author , Essa GulEssa Gul More articles by this author , Omar AlshamiOmar Alshami More articles by this author , Michael SourialMichael Sourial More articles by this author , Courtenay MooreCourtenay Moore More articles by this author , Cheryl LeeCheryl Lee More articles by this author , and Tasha PosidTasha Posid More articles by this author View All Author Informationhttps://doi.org/10.1097/JU.0000000000003297.02AboutPDF ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsReprints ShareFacebookLinked InTwitterEmail Abstract INTRODUCTION AND OBJECTIVE: The next generation of physicians must be able to provide competent care to an increasingly diverse patient population. Understanding patient barriers to seeking/accessing healthcare of underserved and underrepresented communities is critical. Our objective was to assess patient-perceived barriers to seeking and accessing healthcare. We compared barriers reported by patients attending our University Hospital (UH) vs. patients attending a community free clinic. METHODS: Urology patients at our University Hospital (n=232) or being seen at a community free clinic (Urology: n=46, Non-Urology: n=137) completed a short survey following their visit, which assessed demographics, visit satisfaction, and barriers towards seeking and accessing healthcare across four domains: financial/insurance, cultural/language, condition stigma, health literacy. RESULTS: Urology patients seen at the community clinic reported more barriers compared to non-Urology patients at the clinic and Urology patients seen at UH (p<0.05). Community clinic Urology patients reported financial/insurance more barriers (p<0.01), particularly compared to UH patients (p<0.001). Linear regression modeling on our UH patients indicated that race (p=0.009) and how sensitive the patient perceived their doctor to be to their cultural needs (p=0.008) predicted satisfaction with their visit (p<0.001), while gender (p=0.007), race (p=0.051, marginal), native language (p=0.041) predicted whether they would recommend their provider. CONCLUSIONS: As we consider training the future workforce, educators must consider the increasingly diverse patient population that we serve, as well as the communities and settings in which they are seen. We should also consider that many academic institutions may see more affluent patient populations, so additional training should be given to learners where possible. Source of Funding: Funding: OSU Undergraduate Research Apprenticeship Program, OSU College of Medicine Educational Research Stimulus Grant, American Educational Research Association’s Education Research Service Projects Program, Arnold P. Gold Foundation © 2023 by American Urological Association Education and Research, Inc.FiguresReferencesRelatedDetails Volume 209Issue Supplement 4April 2023Page: e678 Advertisement Copyright & Permissions© 2023 by American Urological Association Education and Research, Inc.MetricsAuthor Information Dairon Denis-Diaz More articles by this author Aliza Khuhro More articles by this author Chase Arnold More articles by this author Hafsa Asif More articles by this author Zahra Khuhro More articles by this author Essa Gul More articles by this author Omar Alshami More articles by this author Michael Sourial More articles by this author Courtenay Moore More articles by this author Cheryl Lee More articles by this author Tasha Posid More articles by this author Expand All Advertisement PDF downloadLoading ...

Culture, stigma, and inequities creating barriers in alcohol use disorder management in alcohol-associated liver disease.

Culture, stigma, and inequities creating barriers in alcohol use disorder management in alcohol-associated liver disease.

Barriers to palliative care in hepatocellular carcinoma: A review of the literature.

Hepatocellular carcinoma (HCC) is a deadly and burdensome form of liver cancer with an increasing global prevalence. Its course is unpredictable as it frequently occurs in the context of underlying end-stage liver disease, and the associated symptoms and adverse effects of treatment cause severe suffering for patients. Palliative care (PC) is a medical specialty that addresses the physical, emotional, and spiritual needs of patients and their carers in the context of life-limiting illness. In other cancers, a growing body of evidence has demonstrated that the early introduction of PC at diagnosis improves patient and carer outcomes. Despite this, the integration of palliative care at the diagnosis of HCC remains suboptimal, as patients usually receive PC only at the very terminal phase of their disease, even when diagnosed early. Significant barriers to the uptake of palliative care in the treatment algorithm of hepatocellular carcinoma fall under four main themes: data limitations, disease, clinician, and patient factors. Barriers relating to data limitations mainly encapsulated the risk of bias inherent in published work in the field of PC. Clinician-reported barriers related to negative attitudes towards PC and a lack of time for PC discussions. Barriers related to the disease align with prognostic uncertainty due to the unpredictable course of HCC. Significantly, there exists a paucity of evidence exploring patient-perceived barriers to timely PC implementation in HCC. Given that patients are often the underrepresented stakeholder in the delivery of PC, future research should explore the patient perspective in adequately designed qualitative studies as the first step.

Perceived Patient Barriers to Tooth-Retaining Treatment in Tanzania.

Dental caries is the most common chronic health condition of humankind and goes untreated in many resource-limited settings. When clinical dental care is accessible, tooth extraction is often chosen over potentially more quality-of-life favorable restorative services. To identify patient-perceived barriers to utilization of dental restorative services among Tanzanian dental patients. A cross-sectional study was conducted among adult patients in 5 public dental facilities in Tanzania. Participants (N = 736) were interviewed before and after their dental visit on the same day using structured questionnaires. Sociodemographic characteristics, oral care-seeking behavior, previous experiences with dental restorations, and perceived barriers toward utilization of dental restorative services were assessed. Among patients treated for dental caries, logistic regression models estimated associations between patient factors and receipt of either dental extractions or restorative treatment. About one-third (36.3%) of patients who reported being diagnosed with dental caries received a dental restoration. Stated barriers to utilization of restorative care included uncertainty about treatment outcomes (43.1%), cost (31.5%), and fear of treatment (31.0%). Among all patients who had received restorative treatment in the past, almost two-thirds (61.7%) reported ≥1 negative experience associated with the treatment. In multivariable adjusted modeling, higher education and income levels, having health insurance, and less perceived uncertainty about treatment outcomes were positively associated with receiving restorative treatment. In this setting, most public dental patients with caries received extractions over restorative care. Addressing cost, quality of care, and other patient concerns may all be needed to increase utilization of tooth-retaining procedures. For many public dental patients in Tanzania, dental caries is addressed with extractions over restorative care. To advance greater utilization of tooth-sparing treatment, patient factors, including uncertainty about the quality of restorative care and delayed dental care-seeking behavior, should be addressed. Targeted interventions to increase patient awareness on positive outcomes of restorative care and strengthen preventive dental visits are required.

Proactive, Recovery-Oriented Treatment Navigation to Engage Racially Diverse Veterans in Mental Healthcare (PARTNER-MH), a Peer-Led Patient Navigation Intervention for Racially and Ethnically Minoritized Veterans in Veterans Health Administration Mental Health Services: Protocol for a Mixed Methods Randomized Controlled Feasibility Study.

BackgroundMental health care disparities are persistent and have increased in recent years. Compared with their White counterparts, members of racially and ethnically minoritized groups have less access to mental health care. Minoritized groups also have lower engagement in mental health treatment and are more likely to experience ineffective patient-provider communication, which contribute to negative mental health care experiences and poor mental health outcomes. Interventions that embrace recovery-oriented practices to support patient engagement and empower patients to participate in their mental health care and treatment decisions may help reduce mental health care disparities. Designed to achieve this goal, the Proactive, Recovery-Oriented Treatment Navigation to Engage Racially Diverse Veterans in Mental Healthcare (PARTNER-MH) is a peer-led patient navigation intervention that aims to engage minoritized patients in mental health treatment, support them to play a greater role in their care, and facilitate their participation in shared treatment decision-making.ObjectiveThe primary aim of this study is to assess the feasibility and acceptability of PARTNER-MH delivered to patients over 6 months. The second aim is to evaluate the preliminary effects of PARTNER-MH on patient activation, patient engagement, and shared decision-making. The third aim is to examine patient-perceived barriers to and facilitators of engagement in PARTNER-MH as well as contextual factors that may inhibit or promote the integration, sustainability, and scalability of PARTNER-MH using the Consolidated Framework for Implementation Research.MethodsThis pilot study evaluates the feasibility and acceptability of PARTNER-MH in a Veterans Health Administration (VHA) mental health setting using a mixed methods, randomized controlled trial study design. PARTNER-MH is tested under real-world conditions using certified VHA peer specialists (peers) selected through usual VHA hiring practices and assigned to the mental health service line. Peers provide PARTNER-MH and usual peer support services. The study compares the impact of PARTNER-MH versus a wait-list control group on patient activation, patient engagement, and shared decision-making as well as other patient-level outcomes. PARTNER-MH also examines organizational factors that could impact its future implementation in VHA settings.ResultsParticipants (N=50) were Veterans who were mostly male (n=31, 62%) and self-identified as non-Hispanic (n=44, 88%) and Black (n=35, 70%) with a median age of 45 to 54 years. Most had at least some college education, and 32% (16/50) had completed ≥4 years of college. Randomization produced comparable groups in terms of characteristics and outcome measures at baseline, except for sex.ConclusionsRather than simply documenting health disparities among vulnerable populations, PARTNER-MH offers opportunities to evaluate a tailored, culturally sensitive, system-based intervention to improve patient engagement and patient-provider communication in mental health care for racially and ethnically minoritized individuals.Trial RegistrationClinicalTrials.gov NCT04515771; https://clinicaltrials.gov/ct2/show/NCT04515771International Registered Report Identifier (IRRID)DERR1-10.2196/37712

Barriers and facilitators to resuming meaningful daily activities among critical illness survivors in the UK: a qualitative content analysis

ObjectiveTo identify critical illness survivors’ perceived barriers and facilitators to resuming performance of meaningful activities when transitioning from hospital to home.DesignSecondary content analysis of semistructured interviews about patients’ experiences of...

Patient-perceived barriers to surgical treatment of cleft lip and palate in Brazil: A multi-region study

IntroductionMany patients worldwide are unable to access timely primary repair of cleft lip and palate. The aim of this study was to assess patient-perceived barriers to accessing timely cleft lip and palate repair across Brazil. MethodsA 29-item questionnaire was applied to patients undergoing surgery for cleft lip and/or palate across five contrasting sites in Brazil from February 2016 to November 2017. Differences in patient timelines, demographics, and patient-reported barriers were compared by region. A multivariate logistic regression was used to determine predictors of delayed care. ResultsOf 181 patients, 42% of patients received timely primary surgical repair. The age of the patient at the interview was 82 months (standard deviation [SD] 107) and 52% were male. The majority of delays occurred between diagnosis and primary surgical repair. The mean number of barriers to accessing timely surgical care cited by each patient was 3.77. The most common barrier was perceived “lack of hospitals that provided the surgery in my area” (48% (n = 86)). Univariate logistic regression showed increased odds of receiving late care in the state of Amazonas (odds ratio [OR] 2.91; 95% confidence interval [CI] 1.07–7.96; P = 0.037) or Para (OR 4.46; 95% CI 1.09–19.70; P = 0.037). Multivariate logistic regression determined predictors of delayed care to be female sex (OR = 2.05; 95% CI 1.05–3.99; P = 0.035) and perceived poor availability of care (OR = 0.045; 95% CI 1.02–4.37; P = 0.045). ConclusionThe majority of patients in Brazil are not receiving timely primary repair of their clefts. Improvements in the coordination of care, patient education and patient empowerment are required.

Variation in Patient-Described Barriers to and Facilitators of Diabetes Management by Individual-Level Characteristics: A Cross-Sectional, Open-Ended Survey.

This study analyzed patient-described barriers and facilitators related to diabetes management, focusing on how these differ by glycemia and across individual characteristics. A cross-sectional telephone survey was conducted with adult patients with diabetes in Alberta, Canada, asking two open-ended questions to describe the most helpful and difficult components of their diabetes management. Responses were analyzed using directed content analysis using the Theoretical Domains Framework as a template. The most frequently cited facilitator was care context and information, and the most frequently cited barriers were cognitive challenges and structural barriers, with patient-perceived barriers and facilitators varying by individual-level factors.

Evaluation of a whole process management model based on an information system for cancer patients with pain: A prospective nonrandomized controlled study

ObjectiveThe aim of this study was to evaluate the effects of whole process management model interventions based on information system benefits reported by patients with cancer pain. MethodsWe performed a quantitative, prospective nonrandomized controlled design from June to October 2020. A total of 124 cancer patients with pain were enrolled. Patients in the experimental group received a whole process management model intervention based on an information system compared to the control group who received routine cancer pain management. Data were collected at baseline and after a four-week follow-up, acting as a test-retest control. The primary outcome was pain management quality, which was measured using the American Pain Society Patient Outcome Questionnaire-Chinese version (APS-POQ-C). Secondary outcomes were patient-related attitudinal barriers and analgesic adherence. The Barrier Questionnaire (BQ) and a single-item questionnaire were used. Chi-square tests were used to compare the pain intensity and analgesic adherence, independent sample t-test and Mann–Whitney U test were performed to test the differences in the pain management quality and patient-related attitudinal barriers between control and experimental groups. ResultsBaseline characteristics and outcomes of the participants did not differ significantly (P ​> ​0.05). Primary outcomes were changes in four aspect of the quality of pain management (APS-POQ-C) between the two groups (P ​< ​0.05). Patients in the whole process management group reported significantly better pain control and perception of care than the control group. With respect to secondary endpoints, a significant difference in favor of the experimental group was found for barriers (P ​< ​0.05) and medication adherence (60.0% vs. 40.0%; P ​< ​0.05) after the interventions. ConclusionsThe whole process management of patients with cancer pain effectively improves patient-reported quality of pain management, reduces patient-perceived barriers, enhances patient adherence to analgesic drugs and is worthy of clinical application.

EngagINg the COmmunity to Reduce Preterm birth via Adherence To an Individualized Prematurity Prevention Plan (INCORPorATe IP3): intervention development and future pilot study design

Objective Non-Hispanic Black birthing individuals are at increased risk of preterm birth compared to other racial and ethnic groups. In our clinical setting, we offer a tailored package of recommendations to reduce the risk of preterm birth known as an individualized prematurity prevention plan (IP3). Patient-centered, community engaged interventions that address patient-perceived barriers to preterm birth prevention are urgently needed. Materials and methods We engaged a group of stakeholders to develop a mutli-level (patient-centered and community-involved) intervention that will increase adherence to an individualized prematurity prevention plan (IP3) by addressing barriers identified during our prior qualitative studies. Results The intervention includes trained doulas from a community-led, Black owned doula group. The doulas will moderate group prenatal social support sessions. In between the group sessions, participants will be encouraged to continue interacting with one another and the doulas using a private Facebook™ group page. We will pilot test the intervention in a cohort of pregnant, self-identified non-Hispanic Black patients with a history of prior preterm birth. Conclusion We present a novel, patient-centered, community engaged intervention to reduce preterm birth in high-risk non-Hispanic Black birthing individuals. If the intervention is feasible based on the pilot study findings, we anticipate conducting an appropriately powered study to determine whether the intervention achieves our goal of reducing preterm birth.