Genetic factors associated with hidradenitis suppurativa, a literature review.

Background: Hidradenitis suppurativa (HS) is a chronic inflammatory disease characterized by deep-seated, painful lesions most frequently occurring in intertriginous areas of the skin. HS leads to poor quality of life in affected individuals and is difficult to diagnose and treat. Objective: Understanding the genetics associated with familial inheritance may lead to a better understanding of the pathogenesis of this debilitating disease. Methods: Articles published until March 9, 2023, were identified in PubMed using the following search terms: hidradenitis suppurativa and gene* or acne inversa and gene*. Results: The rate of monogenic mutations associated with HS is less than 7%, with the most common genetic mutations reported in sporadic and familial HS cases being in NCSTN and less frequently in PSENEN. Individuals with mutations in the gamma-secretase complex tended to have more severe HS and an early age of onset. Limitations: This study was limited to the case studies available in PubMed, the majority of which used targeted gene panels to detect genetic mutations. Conclusion: Approximately 30% of individuals diagnosed with HS report having a positive family history; however, very few studies demonstrate monogenic familial transmission of HS. The case studies of syndromic HS reported a variety of genetic mutations associated with HS, some of which were familial, while others were sporadic, suggesting that other pathways may be involved in the pathogenesis of HS and other potential mutations that have yet to be evaluated. More research is needed to understand the genetic mutations in HS.

Delivery of Care for Pediatric Patients Receiving Blinatumomab: A Children's Oncology Group Study.

BACKGROUND: Blinatumomab is an immunotherapy agent used in pediatric oncology for the treatment of B-lineage acute lymphoblastic leukemia. Administration of blinatumomab, via continuous 28-day infusion cycles, can present multiple decision points and challenges related to patient care. Nurses are at the forefront of coordinating and delivering care for patients receiving blinatumomab. OBJECTIVE: To describe the current state of practice across Children's Oncology Group (COG) member institutions regarding blinatumomab administration in both inpatient and home/outpatient settings. METHODS: Between August and December 2021, a cross-sectional survey was used to determine current institutional practices related to blinatumomab administration. A single targeted respondent who was actively engaged in coordinating blinatumomab administration completed the survey on behalf of each COG institution. RESULTS: Survey participation rate was 78% (150/192). During the first 28-day blinatumomab cycle, 71 institutions (53%) reported patient hospital stays between 73 hours and 7 days; 42 (31%) reported hospital stays ≤72 hours, and only 12 (9%) reported hospitalization for the full 28-day infusion. Small- to medium-size institutions were more likely to report longer hospitalizations (P = .03). Most blinatumomab administration occurred in the outpatient setting, with low rates of unplanned clinic/emergency room visits. CONCLUSIONS: The majority of COG institutions have navigated the complex coordination of care required for children to receive blinatumomab at home. Wide variations in practice were noted across institutions. IMPLICATIONS FOR PRACTICE: This study describes current institutional practices surrounding administration of 28-day blinatumomab infusions in children with leukemia and offers a starting point for institutional benchmarking and standardization of practice.

Advance Care Planning Among Older Adults with Cognitive Impairment.

In this study, we used data from the Health and Retirement Study (HRS) to investigate factors associated with older adults' engagement with advance care planning (ACP) across varying levels of cognitive functioning status. Our analysis used a sample of 17,698 participants in the HRS 2014 survey. Survey descriptive procedures (Proc SurveyMeans, Proc SurveyFreq) and logistic regression procedures (Proc SurveyLogistic) were used. Race, ethnicity, level of cognition, education, age, and number of chronic diseases consistently predicted ACP. Participants with lower levels of cognition were less likely to have a living will and durable power of attorney for healthcare (DPOAH). African American and Hispanic participants, younger participants, and those with lower cognition and education levels were less likely to engage in ACP. Marital status and loneliness predicted ACP engagement. Some results varied across the cognition cohorts. Our results indicated that sociodemographic status, together with health and cognitive status, has a significant role in predicting ACP. The results can provide valuable insights on ACP for older adults with or at risk of Alzheimer's disease and related dementia and other cognitive impairments, caregivers, families, and healthcare providers.

Real-time continuous glucose monitoring improves glycemic control and reduces hypoglycemia: Real-world data.

AIM: To study the effect of real time continuous glucose monitor (RT-CGM) use on glycemic parameters in patients with diabetes mellitus (DM) in real world practice. METHODS: We retrospectively studied 91 adult subjects with DM who had been using Dexcom™ RT-CGM. Two consecutive hemoglobin A1c (HbA1c), both prior to and after at least 3 months of RT-CGM initiation, were collected. A total of 31 subjects completed a 5-14 day user blinded CGM using a Freestyle Libre™ prior to RT-CGM initiation. The first two week period following at least 3 months use of RT-CGM was analyzed for CGM metrics. RESULTS: A total of 51.6 % of subjects had T1DM, 34.1 % used continuous subcutaneous insulin infusion (CSII), and 62.6 % had DM for > 10 years. Both HbA1c obtained following RT-CGM initiation decreased significantly compared to baseline (8.11 + 1.47% vs 7.69 + 1.25 %; P = 0.002 & 8.16 + 1.51 % vs 7.62 + 1.06 %; P = 0.001). Subjects with baseline HbA1c > 7.0 % showed even more robust reduction in both HbA1c after RT-CGM initiation (8.74 + 1.24 % vs 7.99 + 1.22 %; P = 0.000 & 8.74 + 1.32 % vs 7.85 + 1.07 %; P = 0.001). On comparison of CGM metrics, there was a significant reduction in time spent in hypoglycemia (sugars < 70 mg/dl) including severe hypoglycemia (sugars < 54 mg/dl) after initiation of the RT-CGM (9.16 + 8.68 % vs 1.29 + 2.21 %; P = <0.001 & 4.58 + 5.43 % vs 0.28 + 0.58 %; P = <0.001). CoV of glucose was also decreased significantly (39.61 + 9.36 % vs 31.06 + 6.74 %; P = <0.001) with RT- CGM use. CONCLUSION: RT-CGM use for at least 3 months in patients with DM results in meaningful HbA1c reductions with stable glycemic control without increasing the risk of hypoglycemia.

Does Culture Matter? Young and Middle-Aged Iranian-American Adults' Perspectives Regarding End-of-Life Care Planning.

BACKGROUND: An increase of cultural diversity and treatment options offer opportunities and challenges related to end-of-life (EOL) care for healthcare providers and policymakers. EOL care planning can help reduce confusion and uncertainty when individuals and family members need to make decisions about EOL care options. OBJECTIVE: The purpose of this study was to investigate preferences, attitudes, and behaviors regarding EOL care planning among young and middle-aged Iranian-American adults. METHODS: A cross-sectional national sample of 251 Iranian-American adults completed surveys. Paper and online surveys in English and Persian were offered to potential participants. RESULTS: All the participants completed online survey in English language. In incurable health conditions, 56.8% preferred hospitalization and intensive treatments. From the 40.6% participants who preferred comfort care, most preferred care at home (29.5%) compared to an institution (11.1%). Those who preferred hospitalization at EOL mostly preferred intensive and curative treatments. The mean score of attitudes toward advance decision-making was moderately high (11.48 ± 2.77). Favorable attitudes were positively associated with acculturation (r = .31, p < .001), age (r = .15, p < .05), and number of years living in the U.S. (r = .26, p < .001). Conversely, spirituality and favorable attitudes were negatively associated (r = -.17, p < .05). CONCLUSION: Immigrant and culturally diverse individuals have experienced different living and healthcare environments. These differences can influence their EOL care planning and decisions. Knowledge of diverse perspectives and cultures is essential to design culturally congruent plans of EOL care.

Burdens and Educational Needs of Informal Caregivers of Older Adults With Urinary Incontinence: An Internet-Based Study.

PURPOSE: The purpose of this study was to describe the burden and educational needs of informal caregivers of care-dependent older adults with urinary incontinence (UI). DESIGN: A cross-sectional, descriptive survey of informal caregivers recruited through Google Ads was performed. METHODS: An online survey, including the Overactive Bladder-Family Impact Measure, was used to assess five areas of the experience of the informal caregiver that may be affected by caring for a person with UI and their educational needs. FINDINGS: Respondents (n = 77) reported a substantial impact of their care recipients' UI on their lives, with concern, travel, and social subscales most affected. However, 42% never sought treatment on behalf of their care recipient. Educational needs included UI treatment strategies and guidance to select appropriate supplies. CONCLUSIONS: Caregivers underreported their care recipient's UI and need substantially more support from healthcare providers to manage the condition. CLINICAL RELEVANCE: Nurses should assess for UI among care-dependent older adults and, if present, provide information and strategies to lessen the impact on caregiver lives.

Teamwork and Coaching for Successful Manuscript Development by Nurse Faculty: A Novel Approach.

ABSTRACT: The current nurse faculty shortage warrants new models for both retaining faculty effectively and coaching new faculty efficiently. An approach for retaining faculty members through meeting publication review criteria while conserving senior faculty mentoring time is proposed. This article describes a successful manuscript development process using teamwork and coaching among faculty. The outcomes of this efficacious process - submission and acceptance of publishable manuscripts - are reported for two institutions: one is research intensive, and the other is teaching intensive. A noted outcome also includes ideas for future manuscript development process replication.

Cutting Corners: Provider Perceptions of Interpretation Services and Factors Related to Use of an Ad Hoc Interpreter.

INTRODUCTION: This study assessed health providers' perceptions of factors related to professional interpretation services and the association between these factors and the potential use of ad hoc interpreters. METHOD: Data were collected from a convenience sample of 150 health services providers at a large, regional health system in South Carolina. RESULTS: Providers rated "ability to communicate effectively during a clinical encounter" as paramount regarding the use of interpretation services. The most important factors related to the likely use of ad hoc interpreters (cutting corners) included locating a qualified interpreter, having to wait for a qualified interpreter, and technical difficulties regarding phone and video technology. CONCLUSION: Health care organizations may benefit from increasing staff awareness about patient safety and legal and regulatory risks involved with the use of ad hoc interpreters.

Effects of viewing a preferred nature image and hearing preferred music on engagement, agitation, and mental status in persons with dementia.

BACKGROUND: The purpose of the described exploratory study was to test proactive strategies for enhancing engagement and cognitive ability while diminishing dementia-related disordered behaviors of those diagnosed with Alzheimer's disease and other dementias. Study participants resided in an Memory Care unit of an assisted living community. METHOD: The researchers measured the effects of exposure to music and nature images on engagement using the Individualized Dementia Engagement and Activities Scale tool, on cognitive ability using the Montreal Cognitive Assessment, and on agitation using the Cohen-Mansfield Agitation Inventory. RESULT: The within-subject study design revealed that use of both music and nature images hold promise for reducing undesirable behaviors and improving engagement of residents. CONCLUSION: The authors suggest caregivers for those with Alzheimer's disease and other dementias can effectively use nature images and music to improve engagement and reduce disordered behaviors, thus potentially enhancing quality of life for the care recipient as well as the caregiver while possibly reducing the costs of medications used to control dementia-related undesirable behaviors.

Breast cancer fear in African American breast cancer survivors.

The purpose of this study was to describe breast cancer fear according to phase of survivorship, determine whether breast cancer fear levels differed among survivorship phases, and determine the relationship between fear and age in African-American breast cancer survivors. The study utilized secondary data analysis from the study, Inner Resources as Predictors of Psychological Well-Being in AABCS. A new subscale entitled, "Breast Cancer Fear" was adapted from the Psychological Well Being Subscale by Ferrell and Grant. There was no significant difference between fear and phase of survivorship. There was a significant positive relationship between age and fear.

Content, placement, and acquisition of cancer education for Latino patient care: a qualitative study of medical and nursing students.

A focus group study was conducted with five medical and nursing education programs in Southeastern USA. Twenty-five third and fourth year students were queried about their experiences, beliefs, and attitudes regarding Latino patients and cancer care. A general inductive process using open coding and content comparison to identify emerging themes was used to analyze the qualitative data. Investigators used a process of constant comparison to identify emerging themes. Themes included: (1) importance of cultural specificity and relevance in cancer training, (2) timing and placement of cancer education in the curriculum, including classes and/or clinical rotations, (3) anatomical system specificity of cancer training-studying cancer in the context of a specific body system, and (4) the prevention-focused nature of cancer training. Results of the focus groups have been used to inform a web-based survey of medical and nursing students to identify gaps in cancer education specific to Latino populations.

Knowledge, perceptions, and motivations related to HPV vaccination among college women.

Little research exists on the factors that affect the uptake patterns of the recently developed Gardasil® vaccine among young women. Human papillomavirus (HPV)-related knowledge, attitudes, beliefs, and behaviors of 18-24-year-old female students (n = 1,975) were assessed via an electronic survey. Mean HPV knowledge score, on a 10-point scale, was 6.8. A weak positive correlation (r (1,976) = 0.123, p < 0.001) was found between knowledge score and having received the vaccine. Parent recommendation, doctor recommendation, and perceiving the consequences of HPV as severe and prevalent were strongly related to previous vaccination. Data suggest a need for increased education about the vaccine and the importance of physician recommendation in increasing vaccine uptake.

An interinstitutional academic collaborative partnership to end health disparities.

Much has been published in the health care literature describing partnerships between academic institutions and community or health care agencies that are designed to improve health outcomes in medically underserved populations. However, little has been published regarding partnerships between minority- and majority-serving academic institutions with this same aim. Key principles of collaborative partnerships are used in a descriptive analysis of the development, functions, and benefits of such an interinstitutional academic partnership that was formed to reduce and ultimately eliminate health disparities in rural South Carolina. Lessons learned from the partnership parallel other human relationships where mutual respect and trust, open and clear communication, and shared decision and problem solving are important for building and sustaining partnerships.

The LIFE project: a community-based weight loss intervention program for rural African American women.

Obesity continues to be a significant health problem for African American women. While a number of obesity interventions target urban African American women, few target rural ones. The LIFE Project is a 10-week intervention designed to reduce obesity in this rural population. Two different interventions (spiritually based and nonspiritually based) were pilot tested, each utilizing a pretest, posttest design. Results demonstrated that both interventions led to significant reductions in weight, but the spiritually based intervention led to additional improvements. The LIFE Project also demonstrated that churches are appropriate settings to deliver health interventions to these women.

Evidence-based nursing: the role of the advanced practice registered nurse in the management of heart failure patients in the outpatient setting.

Heart failure (HF) is a chronic debilitating illness that affects millions of Americans each year. Patients with HF are faced with chronic physical symptoms, emotional strain, and significant socioeconomic burden. Goals in the management of HF are to slow the disease progression, decrease symptom acuity, and prevent exacerbations that lead to hospital readmission. Management of HF remains a challenge for healthcare providers. There is a fine balance between optimizing patient functioning and minimizing healthcare expenditures. With the incidence of HF increasing annually, it is important to have effective disease management strategies in place. In any disease management program, it is important to follow those guidelines outlined by evidence-based practice. The purpose of this systematic review was to evaluate current evidence-based practice and determine what benefit exists of having an advanced practice registered nurse assist in the management of patients with HF.

Influence of family resources and coping behaviors on well-being of African American and Caucasian parents of school-age children with asthma.

A descriptive cross-sectional study was designed to examine the influence of family resources and coping behaviors on the well-being of African American and Caucasian parents providing care to a school-age child with asthma. A convenience sample of 71 (33 African American and 38 Caucasian) parents of school-age children with asthma were recruited from two private medical practices and one school. Family resources were assessed using the Family Inventory of Resources for Management. Coping behaviors were assessed using the Coping Health Inventory for Parents and well-being was measured by the General Well-being Schedule. For both groups, the findings revealed family resources are significantly related to parental well-being. Also, coping behaviors were significantly related to the well-being of Caucasian parents. The results of this study support the literature related to the importance of resiliency factors such as family resources and coping behaviors on parental well-being.

Coping and psychosocial adaptation to Type 2 diabetes in older Blacks born in the Southern US and the Caribbean.

Older Black men and women (n = 212) with Type 2 diabetes completed questionnaires. Spearman's rho correlation indicated that confrontive coping strategies supported effective psychosocial adaptation for persons originally from Haiti and Jamaica, while emotive coping strategies were related to ineffective psychosocial adaptation for persons originally from Barbados and to increased psychological distress for all participants. Women used more palliative coping; no gender differences were observed for psychosocial adaptation. Health care orientation, extended family relationships, and psychological distress domains distinguished Blacks born in Haiti from Blacks born in Barbados and Jamaica, the Southern US and Jamaica, and the Southern US, Barbados, and Jamaica. Findings from this study may aid in the development of interventions focused on improving diabetes self-management for older Blacks.

Demands and resources: parents of school-age children with asthma.

Asthma is one of the most common chronic diseases in children and is frequently noted as the reason for school absences. The purpose of this pilot study was to determine the differences in demands and resources reported by African American (AA) and European American (EA) parents of school-age children with asthma. A convenience sample of 37 parents participated in the study. Data were collected from 19 AA and 18 EA parents. Family stress theory provided the framework for this study. All subjects completed a demographic questionnaire, the Care of My Child With Asthma Scale, and the Family Inventory of Resources for Management (FIRM). Descriptive statistics were used to analyze the data. The most time-consuming caregiving demand reported by EA parents was providing emotional support for the child. For AA parents, the most time-consuming caregiving demand was managing work or school outside the home and organizing asthma treatments at the same time. AA parents had limited resources in the area of extended family social support. The Mann-Whitney U test found no statistically significant differences between AA and EA parents in relation to demands and resources. Nursing implications are presented.