Fear and Frustration among Women with Recurrent Urinary Tract Infections: Findings from Patient Focus Groups.

PURPOSE: We investigated the perspectives of women suffering from recurrent urinary tract infections using patient focus group discussions with an emphasis on patient attitudes toward the current prevention and treatment of urinary tract infection episodes. MATERIALS AND METHODS: Twenty-nine women with recurrent urinary tract infections were recruited from a tertiary urology practice to participate in one of 6 focus groups. Participants were asked questions related to urinary tract infection knowledge, prevention strategies, treatment and impact on quality of life. Grounded theory methods were used to analyze focus group transcripts and identify preliminary themes that describe patient attitudes toward current management strategies for recurrent urinary tract infections. RESULTS: The median age of participants was 46 years (range 20-81). The majority were Caucasian and held a college degree. The 7 preliminary themes identified during discussions fell into 2 categories: 1) negative impacts of taking antibiotics for prevention and treatment of recurrent urinary tract infections, and 2) resentment of the medical profession regarding their management of recurrent urinary tract infections. From the preliminary themes, the emergent concepts of "fear" and "frustration" became evident. CONCLUSIONS: Focus group discussions of women with recurrent urinary tract infections suggest that many women are fearful of the adverse effects of antibiotics and are frustrated with the medical profession for not addressing their fears and optimizing antibiotic stewardship. There is a need for physicians to modify management strategies to address these concerns and to devote more research efforts to improving the nonantibiotic options for prevention and treatment of recurrent urinary tract infections, as well as management strategies that better empower patients.

Identity and perceptions of quality of life in Alzheimer's disease.

BACKGROUND: With life expectancy on the rise and the baby boomer generation growing older, Alzheimer's disease (AD) will affect more individuals and families than ever before. Therefore, it is imperative that healthcare providers identify the objective and perceived factors which positively and negatively affect the experience of progressing through AD. AIM: The goal of this exploratory qualitative research is to begin to develop an in-depth description of the perceptions related to life satisfaction in early-to mid-AD from the patient and caregiver perspectives. METHODS: A convenience sample of four community-dwelling AD patients and caregivers were recruited from a local Alzheimer's Association support group. Semi-structured interviews were conducted together with participants and caregivers. RESULTS: The major findings of this study uncovered a process by which 1) changes in activity occur in response to the diagnosis 2) dyads discover new ways in which to mutually adapt and cope and 3) the person with dementia remains meaningfully engaged in their lives with a generally positive perception of quality of life (QoL). CONCLUSIONS: These preliminary findings are a promising line of research and have implications for Alzheimer's patients, their families, and person-centered care. By accounting for individual levels of baseline engagement and taking each patient's perspective into account, nurses have the ability to identify individual changes over time and positively impact the patient's QoL. Further studies with larger and more diverse samples are needed to expand upon this preliminary framework.

The Role of Media in Non-Directed (Altruistic) Living Kidney Donation.

This study seeks to characterize how non-directed living kidney donors use media and informational resources over the course of their kidney donation journey. We conducted semi-structured interviews with non-directed donors (NDDs) who initiated kidney transplant chains. Interview transcripts were reviewed and references to media or informational resources were classified by type and pattern of use. More than half (57%) of NDDs reported that an identifiable media or informational resource resulted in their initial interest in donation. Two-thirds (67%) of NDDs cited the influence of stories and personal narratives on their decision to donate. After transplant, media and informational resources were used to promote organ donation, connect with other donors or recipients, and reflect on donation. From the study's findings, we conclude that media and informational resources play an important role in the process of donation for NDDs, including inspiring interest in donation through personal narratives. Media sources provide emotionally and intellectually compelling discussions that motivate potential donors. The results of this study may facilitate the development of more targeted outreach to potential donors through use of personal narratives in articles and television programming about donation.

Feasibility of an intervention for men on androgen deprivation therapy: A research protocol.

Androgen deprivation therapy (ADT) is a treatment used across the prostate cancer disease spectrum and works by suppressing testicular androgen production to castrate levels. Although ADT can provide survival benefits, it is also associated with increased risk for cardiovascular disease, metabolic syndrome, increased visceral fat mass, dyslipidemia, decreased arterial compliance, and diminished health-related quality of life. The Staying Strong And Healthy protocol is a telephone-delivered intervention led by a nurse coordinator to minimize the increased cardiovascular and metabolic risks associated with ADT. This study will evaluate the feasibility of the protocol and provides the foundation for future behavioral interventions across diverse populations of men on ADT.

Spirituality and religiosity of non-directed (altruistic) living kidney donors.

AIMS AND OBJECTIVES: To describe the spirituality and religiosity of 30 non-directed (altruistic) living kidney donors in the USA and explore how they may have affected their motivations to donate and donation process experiences. BACKGROUND: The rise in non-directed donors and their ability to initiate kidney chains offer a novel approach to help alleviate the overextended kidney transplant wait list in the USA. However, little is known about the non-directed donors' motivations, characteristics and experiences. DESIGN: We conducted a qualitative-dominant study and used a grounded theory approach to analyse data. METHODS: Thirty participants completed in-depth interviews between April 2013-April 2015. Three analysts independently read and coded interview transcripts. Grounded theory techniques were used to develop descriptive categories and identify topics related to the non-directed donors donation experience. RESULTS: Sixteen of the 30 non-directed donorss discussed the topic of spirituality and religiosity when describing their donation experiences, regardless of whether they were actively practising a religion at the time of donation. Specifically, three themes were identified within spirituality and religiosity: motivation to donate, support in the process, and justification of their donation decisions postdonation. CONCLUSIONS: Findings from this study are the first to describe how spirituality and religiosity influenced the experiences of U.S. non-directed donorss and may help improve non-directed donors educational resources for future spiritual or religious non-directed donors, and the overall non-directed donors donation experience in efforts to increase the living donor pool. RELEVANCE TO CLINICAL PRACTICE: Spirituality and religiosity are often overlooked yet potentially influential factors in Western medicine, as demonstrated through the experiences of Jehovah's Witnesses and their religious restrictions while undergoing surgery and the beliefs of Christian Scientists against taking medications and receiving medical procedures. Understanding needs of non-directed donors specifically with spirituality and religiosity can better position kidney transplant centres and teams to improve predonation screening of non-directed donor candidates and provide support services during the donation process.

Accuracy of PSA Self-Reports among Low-Income Men with Prostate Cancer after a Public Health Nursing Intervention.

OBJECTIVES: To examine accuracy of patient-reported prostate-specific antigen (PSA) levels among indigent, uninsured men in a state-funded prostate cancer treatment program that provides case management, care coordination, and health education. DESIGN AND SAMPLE: Program evaluation. About 114 men with matched self- and lab-reported PSA levels at program enrollment and another time point within 18 months. MEASURES: Abstraction of self- and lab-reported PSA levels to determine self-report as "accurate" or "inaccurate," and evaluate accuracy change over time, before and after nursing interventions. Chi-square tests compared patients with accurate versus inaccurate PSA values. Nonlinear multivariate analyses explored trends in self-reported accuracy over time. INTERVENTION: Program enrollees receive prostate cancer education from a Nurse Case Manager (NCM), including significance of PSA levels. Men self-report PSA results to their NCM following lab draws and appointments. The NCM provides ongoing education about PSA levels. RESULTS: Of the sample, 46% (n = 53) accurately reported PSA levels. Accuracy of PSA self-reports improved with increasing time since program enrollment. Compared with men at public facilities, those treated at private facilities showed increasing accuracy in self-reported PSA (p = .038). CONCLUSION: A targeted nursing intervention may increase specific knowledge of PSA levels. Additionally, the provider/treatment setting significantly impacts a patient's disease education and knowledge.

Outcomes of shipped live donor kidney transplants compared with traditional living donor kidney transplants.

The disparity between kidney transplant candidates and donors necessitates innovations to increase organ availability. Transporting kidneys allows for living donors and recipients to undergo surgery with a familiar transplant team, city, friends, and family. The effect of shipping kidneys and prolonged cold ischemia time (CIT) with living donor transplantation outcomes is not clearly known. This retrospective matched (age, gender, race, and year of procedure) cohort study compared allograft outcomes for shipped live donor kidney transplants and nonshipped living donor kidney transplants. Fifty-seven shipped live donor kidneys were transplanted from 31 institutions in 26 cities. The mean shipping distance was 1634 miles (range 123-2811) with mean CIT of 12.1 ± 2.8 h. The incidence of delayed graft function in the shipped cohort was 1.8% (1/57) compared to 0% (0/57) in the nonshipped cohort. The 1-year allograft survival was 98% in both cohorts. There were no significant differences between the mean serum creatinine values or the rates of serum creatinine decline in the immediate postoperative period even after adjusted for gender and differences in recipient and donor BMI. Despite prolonged CITs, outcomes for shipped live donor kidney transplants were similar when compared to matched nonshipped living donor kidney transplants.

Purposeful normalization when caring for husbands recovering from prostate cancer.

Despite a growing awareness that prostate cancer is a "couple's disease," the coping strategies, subjective distress, and emotional needs of partners are not adequately addressed. To better understand wives' experiences and processes they enact, we recruited 28 low-income Latinas caring for husbands recovering from prostatectomies to participate in interviews at three time points. Their narratives destabilize a common focus on physical side effects and an implicit bias toward men's reactions. We critically examine an overarching process of normalization, with underlying themes working both toward and against normality. We identified dissonance between detailed accounts of major lifestyle changes and professed normalization. We detail the women's purposeful methods to counteract negative impacts on their lives while seeking support externally. A better understanding of women's strategies and coping is critical to design interventions and education to both capitalize on partners' role in recovery while also addressing hidden causes of increased subjective distress.

Staying Strong and Healthy During Androgen Deprivation Therapy.

BACKGROUND: Androgen deprivation therapy (ADT) for prostate cancer is associated with cardiovascular comorbidities and numerous adverse effects decreasing health-related quality of life. Both exercise and dietary interventions have shown promise in reducing ADT-related negative sequelae. However, feasibility for personalized combined exercise/nutrition/education interventions is not well established. OBJECTIVE: The purpose of this randomized, controlled, mixed-methods pilot study was to evaluate the feasibility of a nurse-led, telephone-delivered education, exercise, and nutrition intervention, Staying Strong & Healthy, to minimize ADT-related cardiovascular/metabolic risks and symptoms. METHODS: Staying Strong & Healthy involves individually tailored education, exercise (aerobic and resistance), and nutrition intervention delivered over 6 months and was compared with attention control. The primary quantitative outcome measure was change from baseline in low-density lipoprotein. Secondary outcomes included change in lipid levels (total cholesterol, high-density lipoprotein, low-density lipoprotein, and triglycerides), fasting blood glucose, hemoglobin A 1c , health-related quality of life, and diet quality. Assessments were performed at baseline, 6 months, and 12 months. RESULTS: Feasibility was demonstrated by low attrition rates and high participant satisfaction. No between-group differences were demonstrated in the cardiovascular/metabolic outcomes. Significant within-group improvements were noted for high-density lipoprotein and hemoglobin A 1c in the intervention group. CONCLUSION: The study results indicate that participation in a personalized, nurse-delivered exercise, nutrition, and educational intervention is feasible and acceptable to men with prostate cancer receiving ADT. IMPLICATIONS FOR PRACTICE: Future randomized controlled research powered to detect significant differences is needed to confirm the impact of the Staying Strong & Healthy intervention on reduction of the cardiovascular/metabolic impact of ADT for men with prostate cancer.

Barriers to prostate cancer care: affordable care is not enough.

Low-income, uninsured Latino men face a myriad of barriers when accessing health care to detect, diagnose, treat, and manage their prostate cancer. In this study, we utilized grounded theory techniques to analyze transcripts of semistructured interviews with 60 Latino men enrolled in a state-funded public assistance program. We developed a descriptive framework to understand barriers to health care access among these men. Findings demonstrate that societal, systemic, and individual barriers function independently and together to bar access to prostate cancer care for Latino men. Participant perceptions illustrate the individual, interpersonal, and macro-level structures that impede access, stressing the need for expanded medical coverage coupled with measures to improve quality care. The health care system needs a multifaceted approach, including alleviation of financial burdens for underserved prostate cancer patients, empowerment of patients with navigational skills, access to culturally competent providers, and consistent monitoring of access to quality health care.

Impact of Comprehensive Health Insurance on Quality of Life in Low-Income Hispanic Men with Prostate Cancer.

OBJECTIVE: To evaluate the effect of the transition from IMPACT, a disease-focused treatment program, to comprehensive health insurance under Medicaid through the Affordable Care Act (ACA) on general and prostate cancer-specific quality of life (QoL) on a cohort of previously uninsured low-income men. We hypothesize that general QoL would improve and prostate cancer-specific QoL would remain the same after the transition to comprehensive health insurance. METHODS: We assessed and compared general QoL using the RAND SF-12v2™ (12-Item Short Form Survey, version 2) and prostate cancer-specific QoL using the UCLA PCI (Prostate Cancer Index) one year before, at, and one year after the transition between 30 men who transitioned to comprehensive insurance (newly insured/Medicaid group) and 54 men who remained in the prostate cancer program (uninsured/IMPACT group). We assessed the independent effects of Medicaid coverage on QoL outcomes using repeated-measures regression. RESULTS: Our cohort was composed primarily of Hispanic men (82%). At transition, patient demographics and clinical characteristics were similar between the groups. General and prostate cancer-specific QoL did not differ between the groups and remained stable over time, Radical prostatectomy as primary treatment and shorter time since treatment were associated with worse urinary and sexual function across both groups and over all three time points. CONCLUSION: Those who transitioned to full-scope insurance and those who remained in the free prostate cancer-focused treatment program had stable general and prostate cancer-specific QoL. High-touch navigation aspects of a disease-focused program may have contributed to stability in outcomes.

Patients' willingness to participate in a breast cancer biobank at screening mammogram.

To characterize patients' willingness to donate a biospecimen for future research as part of a breast cancer-related biobank involving a general screening population. We performed a prospective cross-sectional study of 4,217 women aged 21-89 years presenting to our facilities for screening mammogram between December 2010 and October 2011. This HIPAA-compliant study was approved by our institutional review board. We collected data on patients' interest in and actual donation of a biospecimen, motivators and barriers to donating, demographic information, and personal breast cancer risk factors. A multivariate logistic regression analysis was performed to identify patient-level characteristics associated with an increased likelihood to donate. Mean patient age was 57.8 years (SD 11.1 years). While 66.0 % (2,785/4,217) of patients were willing to donate blood or saliva during their visit, only 56.4 % (2,378/4,217) actually donated. Women with a college education (OR = 1.27, p = 0.003), older age (OR = 1.02, p < 0.001), previous breast biopsy (OR = 1.23, p = 0.012), family history of breast cancer (OR = 1.23, p = 0.004), or a comorbidity (OR = 1.22, p = 0.014) were more likely to donate. Asian-American women were significantly less likely to donate (OR = 0.74, p = 0.005). The major reason for donating was to help all future patients (42.3 %) and the major reason for declining donation was privacy concerns (22.3 %). A large proportion of women participating in a breast cancer screening registry are willing to donate blood or saliva to a biobank. Among minority participants, Asian-American women are less likely to donate and further qualitative research is required to identify novel active recruitment strategies to insure their involvement.

How dry is "OAB-dry"? Perspectives from patients and physician experts.

PURPOSE: Overactive bladder is subtyped into overactive bladder-wet and overactive bladder-dry, based on the presence or absence, respectively, of urgency incontinence. To better understand patient and physician perspectives on symptoms among women with overactive bladder-wet and overactive bladder-dry, we performed patient focus groups and interviews with experts in urinary incontinence. MATERIALS AND METHODS: Five focus groups totaling 33 patients with overactive bladder symptoms, including 3 groups of overactive bladder-wet and 2 groups of overactive bladder-dry patients, were conducted. Topics addressed patient perceptions of overactive bladder symptoms, treatments and outcomes. A total of 12 expert interviews were then done in which experts were asked to describe their views on overactive bladder-wet and overactive bladder-dry. Focus groups and expert interviews were transcribed verbatim. Qualitative data analysis was performed using grounded theory methodology, as described by Charmaz. RESULTS: During the focus groups sessions, women screened as overactive bladder-dry shared the knowledge that they would probably leak if no toilet were available. This knowledge was based on a history of leakage episodes in the past. Those few patients with no history of leakage had a clinical picture more consistent with painful bladder syndrome than overactive bladder. Physician expert interviews revealed the belief that many patients labeled as overactive bladder-dry may actually be mild overactive bladder-wet. CONCLUSIONS: Qualitative data from focus groups and interviews with experts suggest that a spectrum exists between very mild overactive bladder-wet and severe overactive bladder-wet. Scientific investigations are needed to determine whether urgency without fear of leakage constitutes a unique clinical entity.

Alliance of support for low-income Latino men with prostate cancer: God, doctor, and self.

Utilizing qualitative methods, this study describes the perceptions of and reliance on spirituality among indigent Latino men with prostate cancer. Sixty men were interviewed in Spanish. Transcripts were transcribed verbatim, translated, and analyzed using grounded theory techniques. Common across all men was a process involving the formation of an alliance of support that included God, doctors, and self. From this alliance, men drew strength to manage their disease, maintained hope for the future, and found new existential meaning. By recognizing the potential value of this alliance, health care professionals may tap into a beneficial empowering resource for some Latino men.

The role of self-efficacy in quality of life for disadvantaged men with prostate cancer.

PURPOSE: Self-efficacy is associated with increased participation in treatment decision making and improved health related quality of life. We examined the influence of perceived efficacy in patient-physician interactions on health related quality of life among low income, uninsured men with prostate cancer during a 2-year period. MATERIALS AND METHODS: We analyzed data derived on participants enrolled in a state funded program providing free prostate cancer treatment and care to indigent men. We used validated instruments to measure patient self-efficacy (confidence in interacting with physicians), and the general and prostate specific health related quality of life outcomes of urinary, sexual and bowel bother, symptom distress, psychological well-being and vitality. We performed repeated measures analysis with general linear mixed modeling to estimate the association of sociodemographic and clinical covariates with health related quality of life. RESULTS: Our cohort included a total of 472 observations in 99 men. Self-efficacy had a measurable effect on subjective measurements of general and disease specific health related quality of life. Men with the lowest self-efficacy had inferior mean health related quality of life scores across all outcomes. Low self-efficacy was significantly associated with worse bowel bother and general symptom distress during the 2-year study period. Similar health related quality of life outcomes trajectories were observed across self-efficacy categories. CONCLUSIONS: Of disadvantaged men with clinically localized prostate cancer those with the lowest self-efficacy in physician interactions fared worst across all measured domains of health related quality of life. Interventions to improve patient-physician communication in this population may provide physicians with a supplemental method by which to address health perceptions, mitigate symptom experience and improve health outcomes.

Women's experience with severe overactive bladder symptoms and treatment: insight revealed from patient focus groups.

AIMS: Research has focused on treatment of overactive bladder (OAB) symptoms in women with the goal of cure. The objective of this study was to assess women's perceptions of their OAB symptoms, treatment experience, and outcomes by conducting patient focus groups. METHODS: Women seen in our academic center female urology referral clinics were identified by ICD-9 codes for OAB symptoms and recruited to participate in one of five focus groups, totaling 33 patients. Non-clinician moderators conducted the focus group sessions incorporating topics related to patients' perceptions of OAB symptoms, treatments, and outcomes. Data analysis was performed using grounded theory methodology. RESULTS: Qualitative analysis yielded several preliminary themes: impact of OAB on quality of life, strategies to control wetness, medications and side effects, and triggers. The majority of focus group participants reported only a partial response to medication and other physician-recommended treatments for OAB. Therefore, they developed self-reliant personalized strategies to improve their quality of life. These strategies included fluid restriction, preventive toileting, and, most importantly, the use of incontinence pads. CONCLUSIONS: The majority of the women who participated in the focus groups reported only a partial response to medical and other treatments for OAB. As a result, they developed personalized self-management strategies to improve their quality of life. Although most studies addressing the treatment of OAB aim at curing the condition, such a strategy may be unrealistic. Applying a chronic care model that uses a patient-centered symptom-management approach to OAB may optimize patient outcomes and improve quality of life.

Psycholinguistic Screening for Cognitive Decline in Cancer Survivors: A Feasibility Study.

OBJECTIVES: To test the feasibility of using psycholinguistic speech analysis as a proxy for cognitive function in men undergoing treatment for prostate cancer. SAMPLE & SETTING: Audio-recorded speech samples were collected from 13 men enrolled in a parent study at the University of Kansas Cancer Center in Kansas City. METHODS & VARIABLES: Audio-recorded speech samples, collected from clinical interviews and in response to a prompt question during the parent study at two time points, were evaluated to determine feasibility relationships between neurocognitive and psycholinguistic measures. RESULTS: Correlations between neurocognitive and psycholinguistic measures were identified for prompted speech, but the strength of relationships varied between time points. No relationships were identified in clinical interview speech samples. IMPLICATIONS FOR NURSING: Feasibility was demonstrated for recording, transcribing, and analyzing speech from clinical interviews, and results suggest relationships between neurocognitive and psycholinguistic measures in prompted speech. If validated, psycholinguistic assessments may be used to assess cognitive function in cancer survivors. Advances in natural language processing may provide opportunities for automated speech analyses for cancer treatment-related cognitive decline.

How Can We Help Alleviate the Financial Concerns of Non-Directed (Altruistic) Living Kidney Donors?

INTRODUCTION: The recent increase in non-directed donors (NDDs) in the United States (U.S.) may help reduce the overwhelming number of patients on the waitlist. However, non-directed donation may be limiting its full potential. Out-of-pocket donation costs upward of $8,000 may be a barrier to potential donors with altruistic tendencies, but inadequate financial support. This study aimed to describe the financial concerns of 31 U.S. NDDs. METHODS: We conducted qualitative interviews and administered quantitative demographic surveys between April 2013 and April 2015. Interview transcripts were analyzed using grounded theory techniques to describe and expand on themes relevant to the NDD experience. FINDINGS: We identified 4 sub-themes related to the theme of financial concerns: (1) direct costs related to transportation, lodging, and parking, (2) indirect costs of lost wages encountered from taking time off work to recover from surgery, (3) sources of financial support, and (4) suggestions for alleviating donor financial burden. Two thirds of participants (20) expressed concerns about direct and indirect donation costs. 11 NDDs reported the negative impact of direct costs,15 NDDs had concerns about indirect costs; only 7 donors received supplemental financial support from state mandates and transplant programs. DISCUSSION: Understanding the financial concerns of NDDs may guide improvements in the NDD donation experience that could support individuals who are interested in donating but lack the financial stability to donate. Removing financial disincentives may help increase nondirected donation rates, increase the living donor pool, and the number of kidneys available for transplantation.

A comparative study of pain in heart failure and non-heart failure veterans.

BACKGROUND: Progress has been made in addressing pain in specific diseases such as cancer, but less attention has focused on understanding pain in nonmalignant states, including heart failure (HF). METHODS AND RESULTS: From March 2006 to June 2007, 672 veterans were surveyed and scores for the Brief Pain Inventory, pain distress, clinically significant pain levels (moderate to severe pain), and pain locations were compared using univariate and multivariate models. Fifteen percent of the final sample had HF (95/634). In our study, the HF patients were older (P < .000), reported lower levels of general health (P = .018), had more co-morbidities (P < .000), were more likely to have a history of cancer (P = .035), and suffered more chest pain and fewer headaches (P = .026, P = .03, respectively) than their non-HF cohorts. When controlling for age, co-morbidity and cancer disorders, HF and non-HF patients did not differ in pain severity, interference, distress or locations. Of the patients currently experiencing pain, 67.3% of HF patients and 68.4% of non-HF patients rated their pain as moderate or severe (pain >or=4 on a 0 to 10 scale). CONCLUSIONS: Although HF has not been identified as a painful condition, this study suggests the burden of pain is significant for both HF and non-HF ambulatory care patients.

Spirituality and quality of life in low-income men with metastatic prostate cancer.

OBJECTIVE: To determine how spirituality is associated with health-related quality of life (HRQOL) in an ethnically diverse cohort of low-income men with metastatic prostate cancer. METHODS: Eighty-six participants in a state-funded program that provides free prostate cancer treatment to uninsured, low-income men completed written surveys and telephone interviews containing validated measures of spirituality, and general and disease-specific HRQOL. Assessments were made following diagnosis of metastatic disease. We used multivariate analyses to assess the effect of spirituality and its two subscales, faith and meaning/peace, on HRQOL. RESULTS: African American and Latino men, and men with less than a high-school education had the highest spirituality scores. Spirituality was significantly associated with general and disease-specific HRQOL. We also found a significant interaction between faith and meaning/peace in the physical and pain domains. CONCLUSION: Greater spirituality was associated with better HRQOL and psychosocial function. Meaning/peace closely tracks with HRQOL. Higher faith scores, in the absence of high meaning/peace scores, are negatively associated with HRQOL.