Comparing the roles of social context, networks, and perceived social functioning with health-related quality of life among self-reported rural female cancer survivors.

PURPOSE: Rural women, compared to urban, experience worse survivorship outcomes, including poorer health-related quality of life (QOL). There is a need to characterize the role of multilevel social factors that contribute to QOL, including context, networks, and functioning. Our objectives were to (1) use latent class analysis to identify distinct classes of social context and social networks and (2) examine how multilevel social factors (context, networks, and functioning) are associated with health-related QOL. METHODS: We recruited self-identified rural survivors to the Illinois Rural Cancer Assessment (2017-2018), via community-based sampling methods, and participants completed the survey online, by phone, or on paper. We used latent class analysis to generate multidimensional variables for contextual and network factors. We next modeled each social factor sas a predictor in separate, bivariable linear regressions for the QOL outcomes, followed by multivariable, adjusted regressions. RESULTS: For our first objective, there were three classes each of county-level contexts (1, highly rural, socioeconomically disadvantaged, and mostly lacking in cancer-related services; 2, mostly rural, moderately disadvantaged, and underserved; 3, mostly metropolitan, less disadvantaged, and most-resourced) and social networks (1, no caregivers; 2, only spousal caregivers with whom they communicated daily; 3, multiple caregivers with varying daily communication). For our second objective, among all social factors, only functioning was associated with better mental health-related QOL. No factors were associated with physical health-related QOL. CONCLUSIONS: Our findings suggest a rich diversity of social context and networks among rural female cancer survivors, and social functioning is particularly important for mental health-related QOL.

Assessing the relationship between patient-provider communication quality and quality of life among rural cancer survivors.

PURPOSE: We explored relationships between patient-provider communication quality (PPCQ) and three quality of life (QOL) domains among self-identified rural cancer survivors: social well-being, functional well-being, and physical well-being. We hypothesized that high PPCQ would be associated with greater social and functional well-being, but be less associated with physical well-being, due to different theoretical mechanisms. METHODS: All data were derived from the 2017-2018 Illinois Rural Cancer Assessment (IRCA). To measure PPCQ and QOL domains, we respectively used a dichotomous measure from the Medical Expenditure Panel Survey's Experience Cancer care tool (high, low/medium) and continuous measures from the Functional Assessment of Cancer Therapy-General (FACT-G). RESULTS: Our sample of 139 participants was largely female, non-Hispanic White, married, and economically advantaged. After adjusting for demographic and clinical variables, patients who reported high PPCQ exhibited greater social well-being (Std. ß = 0.20, 95% CI: 0.03, 0.35, p = 0.02) and functional well-being (Std. ß = 0.20, 95% CI: 0.05, 0.35, p = 0.03) than patients with low/medium PPCQ. No association was observed between PPCQ and physical well-being (Std. ß = 0.06, 95% CI: - 2.51, 0.21, p = 0.41). Sensitivity analyses found similar, albeit attenuated, patterns. CONCLUSION: Our findings aligned with our hypotheses. Future researchers should explore potential mechanisms underlying these differential associations. Specifically, PPCQ may be associated with social and functional well-being through interpersonal mechanisms, but may not be as associated with physical well-being due to multiple contextual factor rural survivors disproportionately face (e.g., limited healthcare access, economic hardship) and stronger associations with clinical factors.

Act or Wait? Presentation Delay in Symptomatic Breast Cancer in China.

BACKGROUND: In Western countries, factors contributing to breast cancer presentation delay have been identified, but little is known about presentation delay in China, where culture and healthcare systems are quite different. OBJECTIVE: To describe the delay interval among newly diagnosed breast cancer patients in China and to identify factors influencing delay, including the COVID-19 pandemic. METHODS: Using a cross-sectional design, we recruited 154 participants within 3 months of pathological diagnosis of breast cancer. Data were collected using standardized scales and open-ended questions. RESULTS: We found 44.8% of participants delayed ≥1 month, and 24.7% delayed ≥3 months before presentation, after self-discovery of symptoms. Logistic regression analysis showed that factors associated with longer delay (≥1 month) included preferring female physicians for breast examination, fewer negative emotions (afraid, anxious, distressed) regarding breast symptoms, more competing priorities, believing folk therapy can help treat lumps, and visiting a secondary or tertiary hospital instead of primary healthcare providers (P < .05 for all). Interaction tests showed perceived seriousness of symptoms significantly predicted delay of ≥1 month only when perceived healthcare access or trust in physicians was low. Patients (14%) reported delaying due to fear of COVID-19 infection and inability to leave home. CONCLUSIONS: Presentation delays were substantial and multilevel barriers to timely presentation were identified, which would be expected to contribute to later-stage cancer at diagnosis. IMPLICATIONS FOR PRACTICE: Findings suggest that nursing interventions and improved health policies are urgently needed in China, including breast cancer education to increase awareness.

Validation of the Kidney Disease Quality of Life Short Form 36 (KDQOL-36) US Spanish and English versions in a cohort of Hispanics with chronic kidney disease.

OBJECTIVE: Evaluate the reliability and validity of the Kidney Disease Quality of Life Short Form 36 (KDQOL-36) in Hispanics with mild-to-moderate chronic kidney disease (CKD). DESIGN: Cross-sectional SETTING: Chronic Renal Insufficiency Cohort Study PARTICIPANTS: 420 Hispanic (150 English- and 270 Spanish-speakers), and 409 non-Hispanic White individuals, matched by age (mean 57 years), sex (60% male), kidney function (mean estimated glomerular filtration rate 36ml/min/1.73m2), and diabetes (70%). METHODS: To measure construct validity, we selected instruments, comorbidities, and laboratory tests related to at least one KDQOL-36 subscale. Reliability was determined by calculating Cronbach's alpha. RESULTS: Reliability of each KDQOL-36 subscale [SF-12 Physical Component Summary (PCS) and Mental Component Summary (MCS), Symptoms/Problems, Burden of Kidney Disease and Effects of Kidney Disease] was very good (Cronbach's alpha >0.8). Construct validity was supported by expected negative correlation between MCS scores and the Beck Depression Inventory in all three subgroups (r=-0.56 to -0.61, P<.0001). There was inverse correlation between the Symptoms/ Problems subscale and the Patient Symptom Form (r= -0.70 to -0.77, P<.0001). We also found significant, positive correlation between the PCS score and a physical activity survey (r=+0.29 to +0.38, P< or =.003); and between the PCS and MCS scores and the Kansas City Questionnaire (r= +0.31 to +0.64, P<.0001). Reliability and validity were similar across all racial/ethnic groups analyzed separately. CONCLUSION: Our findings support the use of the KDQOL-36 as a measure of HRQOL in this cohort of US Hispanics with CKD.

Impact of genomic testing on urologists' treatment preference in favorable risk prostate cancer: A randomized trial.

INTRODUCTION: The Oncotype Dx Genomic Prostate Score (GPS) is a 17-gene relative expression assay that predicts adverse pathology at prostatectomy. We conducted a novel randomized controlled trial to assess the impact of GPS on urologist's treatment preference for favorable risk prostate cancer (PCa): active surveillance versus active treatment (i.e., prostatectomy/radiation). This is a secondary endpoint from the ENACT trial which recruited from three Chicago hospitals from 2016 to 2019. METHODS: Ten urologists along with men with very low to favorable-intermediate risk PCa were included in the study. Participants were randomly assigned to standardized counseling with or without GPS assay. The main outcome was urologists' preference for active treatment at Visit 2 by study arm (GPS versus Control). Multivariable best-fit binary logistic regressions were constructed to identify factors independently associated with urologists' treatment preference. RESULTS: Two hundred men (70% Black) were randomly assigned to either the Control (96) or GPS arm (104). At Visit 2, urologists' preference for prostatectomy/radiation almost doubled in the GPS arm to 29.3% (29) compared to 14.1% (13) in the Control arm (p = 0.01). Randomization to the GPS arm, intermediate NCCN risk level, and lower patient health literacy were predictors for urologists' preference for active treatment. DISCUSSION: Limitations included sample size and number of urologists. In this study, we found that GPS testing reduced urologists' likelihood to prefer active surveillance. CONCLUSIONS: These findings demonstrate how obtaining prognostic biomarkers that predict negative outcomes before treatment decision-making might influence urologists' preference for recommending aggressive therapy in men eligible for active surveillance.

Rural Cancer Disparities: Understanding Implications for Breast and Cervical Cancer Diagnoses.

BACKGROUND: Rural populations experience several disparities, influenced by structural-, community-, and individual-level barriers, across the breast and cervical cancer continuum. OBJECTIVES: This study seeks to identify structural-, community-, and individual-level barriers that affect rural populations across the cancer continuum, understand the role of nurses serving rural populations in breast and cervical cancer screening and diagnostics, and provide recommendations for working with rural patients. METHODS: This is a secondary analysis of qualitative interviews conducted with public health nurses serving rural populations. FINDINGS: Emergent themes indicate that rural populations experience barriers that affect disparities across the breast and cervical cancer continuum, including a changing healthcare landscape, access to cancer-focused care, access to insurance, collective poverty, and demographic factors. Nurses working with rural communities can address these disparities as they fulfill multiple roles and responsibilities.

Impact of a Genomic Test on Treatment Decision in a Predominantly African American Population With Favorable-Risk Prostate Cancer: A Randomized Trial.

PURPOSE: The Genomic Prostate Score (GPS), performed on biopsy tissue, predicts adverse outcome in prostate cancer (PCa) and has shown promise for improving patient selection for active surveillance (AS). However, its impact on treatment choice in high-risk populations of African Americans is largely unknown and, in general, the effect of the GPS on this difficult decision has not been evaluated in randomized trials. METHODS: Two hundred men with National Comprehensive Cancer Network very low to low-intermediate PCa from three Chicago hospitals (70% Black, 16% college graduates) were randomly assigned at diagnosis to standard counseling with or without a 12-gene GPS assay. The primary end point was treatment choice at a second postdiagnosis visit. The proportion of patients choosing AS was compared, and multivariable modeling was used to estimate the effects of various factors on AS acceptance. RESULTS: AS acceptance was high overall, although marginally lower in the intervention group (77% v 88%; P = .067), and lower still when men with inadequate specimens were excluded (P = .029). Men with lower health literacy who received a GPS were seven-fold less likely to choose AS compared with controls, whereas no difference was seen in men with higher health literacy (Pinteraction = .022). Among men with low-intermediate risk, 69% had GPS values consistent with unfavorable intermediate or high-risk cancer. AS choice was also independently associated with a family history of PCa and having health insurance. CONCLUSION: In contrast to other studies, the net effect of the GPS was to move patients away from AS, primarily among men with low health literacy. These findings have implications for our understanding of how prognostic molecular assays that generate probabilities of poor outcome can affect treatment decisions in diverse clinical populations.

Cognitive testing of PAINReportIt in adult African Americans with sickle cell disease.

PAINReportIt, a computerized version of the McGill Pain Questionnaire (Pain. 1975, 1:277-299), presents pain measurement items to responders in serial display screens accompanied by pop-up screens. In this study, we used cognitive interviews to examine further validity of PAINReportIt with 25 African Americans with sickle cell disease. The specific aims were to determine if the questions in the PAINReportIt program were relevant to and understood by African Americans with sickle cell disease and to describe the nature of the pain they experienced. Most study participants were enthusiastic and able to use the tool as intended and appreciated the comprehensiveness, detail, and multidimensionality of its pain data. For some screens, two to six participants' responses suggested some question understanding and interpretation issues, inability to retrieve the requested information, or technical issues. Their responses indicated that screens lacked sufficient specificity for the temporal nature of pain recurrence over a lifetime. The program captured both nociceptive and neuropathic aspects of sickle cell pain and provided detailed information on the location, intensity, quality, and pattern of pain experienced by participants. We recommend that future revisions to the PAINReportIt program address the temporal issues of measuring recurrent pain, resolve technological issues related to pop-ups, and simplify difficult words to better match the typical health literacy levels of patients. These revisions could further enhance the technological aspects, usability, and cultural appropriateness of the tool for African Americans with sickle cell disease.

Enriching the quality of cross-cultural instrument development through cognitive interviewing: Implications for nursing research.

AIM: During cross-cultural instrument development, a gap commonly exists between the intended meaning of questionnaire items and the extent to which the participant understands that meaning. Because cognitive interviewing can provide such a powerful means for ensuring an accurate interpretation of items, the purpose of this report is to provide a practical guide to encourage its use in nursing research. METHODS: This report provides in-depth information describing: (a) advantages of cognitive interviewing, particularly for cross-cultural instrument development; (b) specific problems it can identify and solve; (c) strategies for performing cognitive interviews, including the four-step model of the question-and-answer process; (d) practical guidance for conducting successful cognitive interviews. RESULTS: To achieve linguistic validity as well as cultural relevance, a variety of factors need to be considered in addition to language, such as cultural interpretations, attitudes, and values. Examples of health-related studies are presented, demonstrating the advantages of cognitive interviewing for instrument development and cross-cultural research. These examples show how cognitive interviewing can be productively used to verify question clarity, patient comprehension, and patients' ease of response and judgment while also helping to establish content validity based on patients' perspectives. CONCLUSIONS: Cognitive interviewing can help nurse researchers discover potential instrument flaws and correct them in advance, subsequently avoiding collection of inaccurate data. Thus, cognitive interviewing should be considered an effective pretesting method for development of accurate instruments, particularly in cross-cultural nursing research.

Gender- and Race-Based Differences in Barriers and Facilitators to Early Detection of Colon Cancer.

Background: Early detection of colon cancer is essential to successful treatment and survival, yet most patients are diagnosed only after onset of symptoms. Previous studies suggest differences in colon cancer screening and presentation by gender and race, but reasons for this are not understood. The purpose of this study was to identify barriers and facilitators to early detection of colon cancer and to compare by gender and race. Materials and Methods: In the Colon Cancer Patterns of Care in Chicago study, non-Hispanic Black and White (NHB, NHW) patients aged 30-79 newly diagnosed with colon cancer between 2010 and 2014 (n = 249) underwent in-depth semistructured interviews regarding the pathway to colon cancer diagnosis. Mixed qualitative and quantitative methods were used to analyze patient narratives and to compare response patterns by gender and race within prespecified domains: health care access factors, provider-related factors, patient-related factors, and diagnostic workup factors. Results: Women reported more barriers than facilitators to early detection than men (barrier: facilitator ratio of 0.60 vs. 0.48). Thematic differences were seen, with women reporting more barriers related to health care access, scheduling of follow-ups, symptom recognition, and inappropriate or inconclusive diagnostic tests. Fewer women than men reported facilitators related to provider factors such as ease of scheduling follow-ups and receiving referrals for screening or a specialist. NHBs and NHWs reported similar ratios of barriers to facilitators (0.55 vs. 0.53), but more NHBs than NHWs reported barriers related to health care access, scheduling follow-ups, and clinical delays, and fewer NHBs reported facilitators related to health care accessibility (existing relationship with provider, ease of scheduling follow-ups). Conclusions: In this diverse population of patients recently diagnosed with colon cancer, we identified substantive gender- and race-based differences in the types and burden of barriers and facilitators to early detection experienced in the path to diagnosis. These differences should be explored further as they may contribute to disparities in the diagnosis and prognosis of colon cancer.

Factors Influencing Surveillance Mammography Adherence Among Breast Cancer Survivors.

PROBLEM IDENTIFICATION: Many breast cancer survivors fail to engage in surveillance mammography to detect new and recurrent cancers. This review identifies factors promoting or inhibiting breast cancer survivors' participation in recommended surveillance mammography. LITERATURE SEARCH: This integrative review included all English-language studies published from 2000 to 2017, identified in CINAHL®, PsycINFO®, Embase®, and MEDLINE® via PubMed®. DATA EVALUATION: 23 studies met the inclusion criteria and were analyzed and synthesized. SYNTHESIS: 19 factors influencing mammography adherence were identified and organized into a conceptual model with two major categories. IMPLICATIONS FOR RESEARCH: The new model of predictors of mammography adherence can provide guidance for identifying individuals at greatest risk for nonadherence, as well as development of new interventions to address barriers to regular mammography screening, to promote early detection of new and recurrent cancers and improved survival rates.

[Quality of life index: development and psychometric properties]. / L'indice de qualité de vie: développement et propriétés psychométriques.

The purpose of the study on which this article is based was to assess the validity and reliability of an instrument designed to measure quality of life. Sixty-four items applicable to both healthy subjects and dialysis patients were tested with graduate students (n = 88); six items relative to dialysis were added, and the instrument was administered to dialysis patients (n = 37). Items were based on literature review, which supported content validity. Correlations between the instrument and an overall satisfaction with life question of 0.75 (graduate students) and 0.65 (dialysis patients) supported criterion-related validity. Support for reliability was provided by test-retest correlations of 0.87 (graduate students) and 0.81 (dialysis patients and Cronbach's alphas of 0.93 (graduate students) and 0.90 (dialysis patients.

Sleep Patterns During Hospitalization Following Hematopoietic Stem Cell Transplantation.

PURPOSE/OBJECTIVES: To characterize patient-reported and objective sleep assessments and provide a preliminary examination of the relationships among sleep, quality of life, and demographic or treatment factors. DESIGN: A secondary data analysis using a descriptive-correlational design. SETTING: University of Illinois Hospital and Health Sciences System. SAMPLE: 40 patients undergoing a hematopoietic stem cell transplantation (HCT) hospitalized for the conditioning regimen, stem cell infusion, and immediate recovery period. METHODS: Each patient wore a wrist actigraph continuously from the fourth day following HCT to the eighth day to objectively assess sleep patterns (total sleep time, sleep onset latency, sleep efficiency, wake after sleep onset, and number of awakenings). At the end of the five-day period, patients completed measures of sleep disturbance and quality of life. MAIN RESEARCH VARIABLES: Objective sleep (total sleep time, sleep onset latency, sleep efficiency, wake after sleep onset, and number of awakenings), subjective sleep (sleep disturbance), and quality of life. FINDINGS: The mean total nighttime sleep (objectively obtained) was 232 minutes (SD = 71 minutes), with 14 patients (35%) sleeping less than three consecutive hours during one or more study days. Age was negatively correlated with patient-reported sleep disturbance. Patient-reported sleep disturbance was significantly associated with length of hospital stay. No correlations were found between patient-reported and objective sleep assessments. CONCLUSIONS: This study objectively documents inadequate and irregular sleep in hospitalized patients undergoing HCT. Sole reliance on patient-reported sleep assessments may not represent the full extent of the problem. IMPLICATIONS FOR NURSING: Attempts to streamline care during the night by not waking patients for routine care unless indicated by the patient's condition (as advocated by the American Academy of Nursing) and providing supportive care for symptoms (such as diarrhea) during the night may reduce the number of awakenings and possibly improve overall sleep quality.

Advance care treatment plan (ACT-Plan) for African American family caregivers: a pilot study.

Research is limited on end-of-life treatment decisions made by African American family caregivers. In a pilot study, we examined the feasibility of implementing an advance care treatment plan (ACT-Plan), a group-based education intervention, with African American dementia caregivers. Theoretically based, the ACT-Plan included strategies to enhance knowledge, self-efficacy, and behavioral skills to make end-of-life treatment plans in advance. Cardiopulmonary resuscitation, mechanical ventilation, and tube feeding were end-of-life treatments discussed in the ACT-Plan. In a four-week pre/posttest two-group design at urban adult day care centers, 68 caregivers were assigned to the ACT-Plan or attention-control health promotion conditions. Findings strongly suggest that the ACT-Plan intervention is feasible and appropriate for African American caregivers. Self-efficacy and knowledge about dementia, cardiopulmonary resuscitation, mechanical ventilation, and tube feeding increased for ACT-Plan participants but not for the attention-control. More ACT-Plan than attention-control participants developed advance care plans for demented relatives. Findings warrant a randomized efficacy trial.

Relationship among Trust in Physicians, Demographics, and End-of-life Treatment Decisions Made by African American Dementia Caregivers.

PURPOSE: A pilot study was conducted in an urban African American community to explore the relationship between trust in physicians, demographics and end-of-life treatment decisions made by African American caregivers of family members with dementia: namely, cardiopulmonary resuscitation, mechanical ventilation and tube feeding. METHODS: In a cross-sectional design, standard measures were administered to a convenience sample of 68 African American caregivers of family members with dementia. Univariate and multivariate analyses were used to explore associations among the variables. RESULTS: Those with more education exhibited higher (p = 0.035) trust in physicians than less educated individuals. Caregivers who were more trusting of their physicians were more likely to use mechanical ventilation (p = 0.0005) than were less trusting caregivers. Conversely, more trusting caregivers were less likely to use tube feeding (p = 0.022). CONCLUSIONS: Our findings suggest relationships exist among trust in physicians, demographics and end-of-life treatment decisions. Thus, health care providers should consider African American caregivers' perceived trust in physicians when counseling about dementia and end-of-life treatment choices.

Fatigue in women with type 2 diabetes.

PURPOSE: The purpose of this study was to explore the relationship between fatigue and physiological, psychological, and lifestyle phenomena in women with type 2 diabetes (T2DM) in order to establish the magnitude and correlates of fatigue in women with T2DM and explore the interrelationships between fatigue and specific diabetes-related factors that may be associated with increased levels of fatigue. These factors included physiological factors (glucose control, diabetes symptoms), psychological factors (diabetes emotional distress, depressive symptoms in general), and lifestyle factors (body mass index, physical activity). METHODS: A cross-sectional, descriptive design was used. Women who reported conditions known to cause fatigue were excluded. Physiological measures included fasting blood glucose (FBG), hemoglobin A1C (A1C), glucose variability, and body mass index (BMI). Women completed questionnaires about health, fatigue levels, diabetes symptoms, diabetes emotional distress, depressive symptoms, physical activity, and current diabetes self-care practices. A subset of the women wore a Medtronic Gold CGM sensor for 3 days for assessment of glucose variability. RESULTS: Eighty-three women aged 40 to 65 years with T2DM completed the study. Fatigue was significantly related to diabetes symptoms, diabetes emotional distress, depressive symptoms, higher BMI, and reduced physical activity. There was no relationship between fatigue and FBG or A1C. The strongest explanatory factors for fatigue were diabetes symptoms, depressive symptoms, and BMI, which accounted for 48% of the variance in fatigue scores. Glucose variability was not significantly associated with fatigue in these women. CONCLUSIONS: Fatigue is a persistent clinical complaint among women with T2DM and may signal the presence of physiological, psychological, and lifestyle-related phenomena that could undermine diabetes health outcomes.

Quality of life of elderly patients after treatment in the ICU.

The purpose of this study was to determine the impact of intensive care unit (ICU) treatment on quality of life (QOL) outcomes for critically ill elderly patients 4-6 months after ICU discharge. A mean overall score of 21.4 (SD=6.3) was obtained with the Quality of Life Index (Ferrans & Powers, 1985), indicating that all the ICU survivors in the sample (N=164) reported good QOL and were satisfied with areas of life that were important to them. Greater social support, better perceived health status, fewer days of hospitalization, and a hospital readmission since discharge were associated with higher QOL (R2=.51). This sample of elderly ICU survivors maintained a good QOL after their critical illness regardless of age.