A preoperative use of manual therapy in a patient with idiopathic pulmonary fibrosis awaiting lung transplant: a case report.

INTRODUCTION: This case report describes the outcomes of a patient with idiopathic pulmonary fibrosis (IPF) treated with manual therapy (MT) in an outpatient physical therapy setting. IPF is a life-threatening interstitial lung disease, often requiring lung transplant for prolonged health related quality of life and survival. There is little literature to support use of MT for IPF. CLINICAL FINDINGS: The patient was a 66-year-old male with IPF and on the Organ Procurement and Transplant Network (OPTN). The patient was dependent on oxygen and referred to physical therapy with neck pain, shoulder pain, and headaches. Evaluation revealed impairments classified as thoracic hypomobility paired with upper extremity referred pain, shoulder impairments and neck pain. Headaches were classified as cervicogenic in nature. OUTCOMES: Improved objective measures of cardiovascular function and quality of life pre- and post- transplant were observed in this patient after 14 treatment visits. DISCUSSION: The utilization of MT appeared to address the patient's impairments, improved quality of life, improved pulmonary function and improved transplant outcomes.

Metatranscriptomics reveals diversity of symbiotic interaction and mechanisms of carbon exchange in the marine cyanolichen Lichina pygmaea.

Lichens are exemplar symbioses based upon carbon exchange between photobionts and their mycobiont hosts. Historically considered a two-way relationship, some lichen symbioses have been shown to contain multiple photobiont partners; however, the way in which these photobiont communities react to environmental change is poorly understood. Lichina pygmaea is a marine cyanolichen that inhabits rocky seashores where it is submerged in seawater during every tidal cycle. Recent work has indicated that L. pygmaea has a complex photobiont community including the cyanobionts Rivularia and Pleurocapsa. We performed rRNA-based metabarcoding and mRNA metatranscriptomics of the L. pygmaea holobiont at high and low tide to investigate community response to immersion in seawater. Carbon exchange in L. pygmaea is a dynamic process, influenced by both tidal cycle and the biology of the individual symbiotic components. The mycobiont and two cyanobiont partners exhibit distinct transcriptional responses to seawater hydration. Sugar-based compatible solutes produced by Rivularia and Pleurocapsa in response to seawater are a potential source of carbon to the mycobiont. We propose that extracellular processing of photobiont-derived polysaccharides is a fundamental step in carbon acquisition by L. pygmaea and is analogous to uptake of plant-derived carbon in ectomycorrhizal symbioses.

Randomized Trial of Exercise and Nutrition on Chemotherapy Completion and Pathologic Complete Response in Women With Breast Cancer: The Lifestyle, Exercise, and Nutrition Early After Diagnosis Study.

PURPOSE: Successful completion of chemotherapy is critical to improve breast cancer outcomes. Relative dose intensity (RDI), defined as the ratio of chemotherapy delivered to prescribed, is a measure of chemotherapy completion and is associated with cancer mortality. The effect of exercise and eating a healthy diet on RDI is unknown. We conducted a randomized trial of an exercise and nutrition intervention on RDI and pathologic complete response (pCR) in women diagnosed with breast cancer initiating chemotherapy. METHODS: One hundred seventy-three women with stage I-III breast cancer were randomly assigned to usual care (UC; n = 86) or a home-based exercise and nutrition intervention with counseling sessions delivered by oncology-certified registered dietitians (n = 87). Chemotherapy dose adjustments and delays and pCR were abstracted from electronic medical records. T-tests and chi-square tests were used to examine the effect of the intervention versus UC on RDI and pCR. RESULTS: Participants randomly assigned to intervention had greater improvements in exercise and diet quality compared with UC (P < .05). RDI was 92.9% ± 12.1% and 93.6% ± 11.1% for intervention and UC, respectively (P = .69); the proportion of patients in the intervention versus UC who achieved ≥85% RDI was 81% and 85%, respectively (P = .44). The proportion of patients who had at least one dose reduction and/or delay was 38% intervention and 36% UC (P = .80). Among 72 women who received neoadjuvant chemotherapy, women randomly assigned to intervention were more likely to have a pCR than those randomly assigned to UC (53% v 28%; P = .037). CONCLUSION: Although a diet and exercise intervention did not affect RDI, the intervention was associated with a higher pCR in patients with hormone receptor-positive/human epidermal growth factor receptor 2-negative and triple-negative breast cancer undergoing neoadjuvant chemotherapy.

Disparities in COVID-19 vaccine hesitancy among a diverse community-based sample in Connecticut, United States.

Though vaccination is among our strongest tools to prevent COVID-19 infections, its delivery has proven challenging. At a time when COVID-19 cases were rapidly increasing in the Northeast, we examined the role of sociodemographic factors, social determinants of health (SDOH), and health-related beliefs, including conspiracy theories, in influencing COVID-19 vaccine hesitancy among a diverse sample of Connecticut (United States) residents. Between August and December 2020, utilizing community partners and advertisements via social media, we surveyed communities known to be most impacted by COVID-19. We used descriptive analysis and multivariable logistic regression to examine vaccine hesitancy. Among 252 participants, most were female (69.8%) and under the age of 55 (62.7%). Approximately one-third reported household incomes less than $30,000 per year and 23.5% were non-Hispanic Black and 17.5% were Hispanic/Latinx. While 38.9% of participants were vaccine hesitant, non-Hispanic Black and Hispanic/Latinx participants were more vaccine hesitant (adjusted odds ratio [AOR] = 3.62; 95% CI 1.77, 7.40) compared to non-Hispanic Whites/Others. Additional factors associated with vaccine hesitancy after adjustment for socioeconomic status and barriers related to SDOH included low perceived risk of COVID-19 and not receiving COVID-19 information from medical institutions and community health workers (p < 0.05). Race/ethnicity, perceived risk, sources of health information, and conspiracy beliefs played a significant role in vaccine hesitancy among this diverse sample. Interventions to promote vaccination should include trusted messengers and sources of information, while long term efforts should focus on addressing the social conditions that deter confidence in scientific data, vaccine efficacy, and the healthcare system.

Critical illness myopathy and trajectory of recovery in acute kidney injury requiring continuous renal replacement therapy: a prospective observational trial protocol.

INTRODUCTION: Acute kidney injury requiring renal replacement therapy (AKI-RRT) is common in the intensive care unit (ICU) and is associated with significant morbidity and mortality. Continuous RRT (CRRT) non-selectively removes large amounts of amino acids from plasma, lowering serum amino acid concentrations and potentially depleting total-body amino acid stores. Therefore, the morbidity and mortality associated with AKI-RRT may be partly mediated through accelerated skeletal muscle atrophy and resulting muscle weakness. However, the impact of AKI-RRT on skeletal muscle mass and function during and following critical illness remains unknown. We hypothesise that patients with AKI-RRT have higher degrees of acute muscle loss than patients without AKI-RRT and that AKI-RRT survivors are less likely to recover muscle mass and function when compared with other ICU survivors. METHODS AND ANALYSIS: This protocol describes a prospective, multicentre, observational trial assessing skeletal muscle size, quality and function in ICU patients with AKI-RRT. We will perform musculoskeletal ultrasound to longitudinally evaluate rectus femoris size and quality at baseline (within 48 hours of CRRT initiation), day 3, day 7 or at ICU discharge, at hospital discharge, and 1-3 months postdischarge. Additional skeletal muscle and physical function tests will be performed at hospital discharge and postdischarge follow-up. We will analyse the effect of AKI-RRT by comparing the findings in enrolled subjects to historical controls of critically ill patients without AKI-RRT using multivariable modelling. ETHICS AND DISSEMINATION: We anticipate our study will reveal that AKI-RRT is associated with greater degrees of muscle loss and dysfunction along with impaired postdischarge recovery of physical function. These findings could impact the in-hospital and postdischarge treatment plan for these patients to include focused attention on muscle strength and function. We intend to disseminate findings to participants, healthcare professionals, the public and other relevant groups via conference presentation and publication without any publication restrictions. TRIAL REGISTRATION NUMBER: NCT05287204.

Patient Perspectives on Care Transitions From Hospital to Home.

Importance: Understanding the patient's perspective of their care transition process from hospital or skilled nursing facility (SNF) to home may highlight gaps in care and inform system improvements. Objective: To gather data about patients' care transition experiences and factors associated with follow-up appointment completion. Design, Setting, and Participants: A survey tool was developed with input from patient advisors and organizations participating in a collaborative quality initiative. Seventeen hospitals, 12 practitioner organizations, and 6 SNFs in Michigan collaborated to identify shared patients who were aged 18 years and older, had a working telephone number, recently returned home or to an assisted living facility with a diagnosis of congestive heart failure or chronic obstructive pulmonary disease, or after an SNF stay. Using consecutive sampling, interviewers collected 5 telephone surveys per month. From October 2018 to December 2019, patients or caregivers were surveyed via telephone 8 to 12 days after discharge from a hospital or SNF. Data were analyzed from March 2020 to January 2022. Exposure: Care transition experiences. Main Outcomes and Measures: The primary outcome was to identify patient-perceived gaps during care transition experiences, including postdischarge follow-up. Results: On the basis of pilot data, the response rate was estimated at 34%, yielding 1257 surveys. Of 1257 survey respondents (mean [SD] age, 70 [12.94] years for 968 patients for whom age data was available), 654 (52%) were female; 829 (74%) were White, 250 (22%) were Black or African American, and 40 (4%) were another race. Eleven percent of patients reported not receiving a telephone number to call for postdischarge questions. Nearly 80% of patients (977 patients) received a follow-up telephone call, and most found it valuable. Twenty percent of patients (255 patients) reported at least 1 social determinant of health issue. Lack of transportation was associated with reduced likelihood of completing a follow-up visit, decreasing the odds of completing a follow-up by nearly 70% (odds ratio [OR], 0.31; 95% CI, 0.18-0.53; P < .001). Compared with other patient groups, Black patients were less likely to report completing a postdischarge follow-up visit (OR, 0.49; 95% CI, 0.36-0.67; P < .001) or to receive prescribed medical equipment (OR, 4.23; 95% CI, 1.30-13.83; P = .02). Conclusions and Relevance: An examination of patient discharge experiences from a hospital or SNF identified inconsistencies in care transition processes, social determinants of health issues needing to be addressed after discharge, and racial disparities between patients who attend follow-up appointments. Physicians should be aware of these findings and their consequences for patient experiences.

Weathering the economic storm together: Family identification predicts future well-being during COVID-19 via enhanced financial resilience.

The economic crisis precipitated by the coronavirus disease (COVID-19) pandemic has placed considerable financial pressures on households across the world. These are compounded by the enforced isolation accompanying pandemic restrictions, during which individuals can struggle to access external assistance and often need to rely heavily on the social, emotional, and financial support of other family members. Previous research indicates that family financial stress has negative consequences for the mental health and well-being of members, but that heightened family identification can provide individuals with a stronger sense of collective financial resilience. In the present study, an online longitudinal survey of U.K. residents (N = 172) shows that, in summer 2020, the positive relationship between individuals' family identification and their well-being 1 month later was mediated by levels of perceived family financial efficacy and financial stress. These findings build upon existing evidence of the pivotal role of the family in financial well-being and suggest that supporting family units to cope with shared financial challenges may have psychological benefits over and above supporting individual family members. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

Examination of the innominate movements in individuals with and without a positive march test.

[Purpose] The March Test (MT), evaluating hypomobility of the sacroiliac joint (SIJ), is often used in clinical practice to evaluate low back pain but has limited reported validity and reliability. Capturing the innominate movement at SIJ associated with the results of MT has not been examined. The purpose of this study was to determine if there was a significant difference in the motion of the innominate between a positive and a negative MT. [Participants and Methods] Sixteen healthy volunteers were assigned into two groups: positive or negative results of the MT. All participants were asked to perform three different tasks: standing on both limbs, static standing on one-limb and flexing the hip to 90 and 100 degrees, and active flexing the hip past 90 degrees. In a 3D motion analysis system, virtual vectors created by landmarks over the ilium defined innominate movement of the ilium related to the sacrum, which were compared between the groups. [Results] There was significantly limited innominate movement in the March Test positive group compared to the March Test negative group. [Conclusion] This study showed hypomobility at SIJ in the March test positive groups. Further investigation is needed for clinical applications.

Effect of healthy diet and exercise on chemotherapy completion rate in women with breast cancer: The Lifestyle, Exercise and Nutrition Early after Diagnosis (LEANer) study: Study protocol for a randomized clinical trial.

BACKGROUND: The World Cancer Research Fund and the American Cancer Society provide nutrition and physical activity guidelines for cancer survivors. Many women with breast cancer do not follow these guidelines and delay efforts toward following them until active treatment is complete. However, adoption of these recommended lifestyle behaviors soon after diagnosis may prevent adverse treatment-related side effects and may improve adherence to treatment, resulting in improved breast cancer prognosis. The Lifestyle, Exercise, and Nutrition Early after Diagnosis (LEANer) study is testing the effect of a nutrition and physical activity intervention on chemotherapy completion rates. METHODS: 172 women with stage I-III breast cancer undergoing chemotherapy will be randomized 1:1 to a yearlong, 16 session, nutrition and exercise intervention or usual care control group. The intervention is delivered by registered dietitians specializing in oncology nutrition and exercise training. The intervention includes goal setting to meet nutrition and physical activity guidelines for cancer survivors. After each chemotherapy session, date and dose of each drug administered, and reason for dose-adjustments and/or dose-delays are abstracted from the electronic medical record or obtained from the treating oncologist. Chemotherapy completion rate is assessed as the average relative dose-intensity (RDI) for the originally planned regimen based on standard formulas. Secondary endpoints of endocrine therapy adherence, treatment-related side effects, and changes in inflammatory and metabolic biomarkers, body composition, and patient reported outcomes are assessed at four timepoints. DISCUSSION: If successful, this study has the potential to make healthy lifestyle interventions a standard component of breast cancer treatment.

Racial/ethnic, socioeconomic, and geographic survival disparities in adolescents and young adults with primary central nervous system tumors.

BACKGROUND: Disparities in survival by race/ethnicity, socioeconomic status (SES), and geography in adolescent and young adult (AYA) patients with central nervous system (CNS) tumors have not been well studied. PROCEDURE: A retrospective cohort study utilizing the Surveillance, Epidemiology, and End Results (SEER) database was conducted for AYA patients diagnosed with primary CNS tumors. Adjusted hazard ratios (aHR) were calculated using a multivariate Cox proportional hazard model to evaluate the association between race/ethnicity, SES, rurality, and hazard of death. RESULTS: All minority groups showed an increased hazard of death with greatest disparities in the high-grade glioma cohort. Lower SES was associated with an increased hazard of death in non-Hispanic White (NHW) patients (aHR 1.12; 95% confidence interval [CI] 1.01-1.24), non-Hispanic Black (NHB) patients (aHR 1.34; 95% CI 1.00-1.80), and patients aged 25-29 years (aHR 1.29; 95% CI 1.07-1.55). Mediation analysis showed an indirect effect of SES on the effect of race/ethnicity on the hazard of death only among NHB patients, with SES accounting for 33.7% of the association between NHB and hazard of death. Rurality was associated with an increased hazard of death for patients in the lowest SES tertile (aHR 1.31; 95% CI 1.08-1.59) and NHW patients (aHR 1.20; 95% CI 1.08-1.34). CONCLUSIONS: Patients identified as a racial/ethnic minority, patients with a lower SES, and patients residing in rural areas had an increased hazard of death. Further studies are needed to understand and address the biological, psychosocial, societal, and economic factors that impact AYA neuro-oncology patients at highest risk of experiencing poorer outcomes.

Are Rural Students Receiving FAPE? A Descriptive Review of IEPs for Students With Social, Emotional, or Behavioral Needs.

Students who are eligible to receive special education and related services are entitled to a free and appropriate public education (FAPE) including the necessary emotional, behavioral, and social supports to access the general curriculum. This study explores Individualized Education Program (IEP) plans of students with disabilities who have social, emotional, or behavioral needs served in five rural independent school districts. Specifically, the study sought to investigate (a) whether the present level of academic and functional performance (PLAAFP) and annual goals demonstrated congruence and (b) whether the degree to which the IEP documents conform to both procedural and substantive requirements for development. A review of 126 IEPs suggests that although IEPs are somewhat compliant, they fail to comprehensively address student needs or align across areas, violating the spirit of Individuals with Disabilities Education Improvement Act. Recommendations and future areas of inquiry are provided.

A Mixed-Methods Analysis of Barriers to and Facilitators of Human Papillomavirus Vaccination Among Adolescents in Montana.

OBJECTIVES: Human papillomavirus (HPV) vaccination rates among adolescents are lower in rural areas than in urban areas of the United States. The objective of this study was to identify barriers to and facilitators of adolescent HPV vaccination in Montana, a large, primarily rural state. METHODS: Using a mixed-methods design, we integrated quantitative analyses of Montana's National Immunization Survey-Teen (NIS-Teen) data from 2013-2017 with qualitative data collected at a statewide meeting in October 2018 and from stakeholder interviews conducted from October 2018 through June 2019. Using NIS-Teen data, we identified trends and estimated adjusted prevalence ratios (aPRs) to identify factors associated with vaccine uptake. Using directed content analysis of qualitative data, we identified themes related to vaccine uptake. RESULTS: In Montana, initiation of the HPV vaccine series among adolescents aged 13-17 increased from 34.4% in 2013 to 65.5% in 2017. We identified 6 themes related to HPV vaccination from qualitative analyses, including medical providers' recommendation style as a facilitator of vaccination and parental vaccine hesitancy as a barrier to vaccination. In NIS-Teen 2017 data (n = 326 adolescents), receiving a medical provider recommendation was significantly associated with series initiation (aPR = 2.3; 95% CI, 1.5-3.6). Among parents who did not intend to initiate the vaccine series for their adolescent within 12 months (n = 71), vaccine safety was the top concern (aPR = 24.5%; 95% CI, 12.1%-36.9%). CONCLUSIONS: HPV vaccination rates have increased in Montana but remain lower than rates for other adolescent vaccines. Future work should focus on reducing missed opportunities, increasing parents' knowledge of and confidence in vaccination, and training medical providers on addressing common vaccine concerns.

The feasibility and acceptability of an early intervention in primary care to prevent chronic fatigue syndrome (CFS) in adults: randomised controlled trial.

BACKGROUND: Chronic fatigue syndrome (CFS, also known as myalgic encephalomyelitis (ME)) is defined as fatigue that is disabling, is accompanied by additional symptoms and persists for ≥ 4 months. Treatment of CFS/ME aims to help patients manage their symptoms and make lifestyle adjustments. We do not know whether intervening early in primary care (< 4 months after onset of fatigue) can prevent the development of CFS/ME. METHODS: This was a feasibility randomised controlled trial with adults (age ≥ 18 years) comparing usual care with usual care plus an early intervention (EI; a combination of psycho-education and cognitive behavioural therapy, CBT). This study took place in fourteen primary care practices in Bristol, England and aimed to identify issues around recruitment and retention for a full-scale trial. It was not powered to support statistical analysis of differences in outcomes. Integrated qualitative methodology was used to explore the feasibility and acceptability of recruitment and randomisation to the intervention. RESULTS: Forty-four patients were recruited (1 August 2012-November 28, 2013), falling short of our predicted recruitment rate of 100 patients in 8 months. Qualitative data from GPs showed recruitment was not feasible because it was difficult to identify potential participants within 4 months of symptom onset. Some referring GPs felt screening investigations recommended by NICE were unnecessary, and they had difficulty finding patients who met the eligibility criteria. Qualitative data from some participant interviews suggested that the intervention was not acceptable in its current format. Although the majority of participants found parts of the intervention acceptable, many reported one or more problems with acceptability. Participants who discontinued the intervention or found it problematic did not relate to the therapeutic model, disliked telephone consultations or found self-reflection challenging. CONCLUSIONS: A randomised controlled trial to test an early intervention for fatigue in adults in primary care is not feasible using this intervention and recruitment strategy. TRIAL REGISTRATION: International Standard Randomised Controlled Trials, ISRCTN72645894. Retrospectively registered on 17 May 2013.

Knowledge of, and beliefs about, access to screening facilities and cervical cancer screening behaviors among low-income women in New Jersey.

Racial/ethnic disparities in cancer outcomes have been well documented. Access to Pap testing may account for some of the variation in the racial and socioeconomic differences in cervical cancer outcomes. Literature exploring perceived access to care as it relates to women of color and low-income women is lacking. The goal of the study was to evaluate and characterize the relationship between what respondents believe about access to free/low-cost screening facilities and screening behaviors among low-income women in New Jersey. We used multivariate logistic regression to investigate belief about access to affordable screening on cancer screening behaviors using data from a cross-sectional study of low-income women in New Jersey (n = 430). Having had a Pap test in the past 3 years was inversely associated with age (OR 0.94, 95% CI 0.92-0.97) and was positively associated with having had insurance in the previous 2 years (OR 32.48. 95% CI 1.04-5.91), higher perceived risk of cervical cancer (OR 2.59, 95% CI 1.29-5.66), and knowing where to go to get a check-up that includes a cancer test (OR 1.97, 95% CI 1.11-3.49). These results suggest that insurance status continues to be a predictor of screening behavior but also that perceived risk awareness of where to go to get cancer screenings in general may influence the likelihood of utilizing screening, which can be important in developing targeted prevention strategies.

Serious adverse events in African-American cancer patients with sickle cell trait and inherited haemoglobinopathies in a SEER-Medicare claims cohort.

African-American (AA) cancer patients have long-experienced worse outcomes compared to non-Hispanic whites (NHW). No studies to date have evaluated the prognostic impact of sickle cell trait (SCT) and other inherited haemoglobinopathies, of which several are disproportionately high in the AA population. In a cohort analysis of treated patients diagnosed with breast or prostate cancer in the linked SEER-Medicare database, the relative risk (RR) for ≥1 serious adverse events (AEs), defined as hospitalisations or emergency department visits, was estimated for 371 AA patients with a haemoglobinopathy (AA+) compared to patients without haemoglobinopathies (17,303 AA-; 144,863 NHW-). AA+ patients had significantly increased risk for ≥1 AEs compared to AA- (RR = 1.19; 95% CI 1.11-1.27) and NHW- (RR = 1.23; 95% CI 1.15-1.31) patients. The magnitude of effect was similar by cancer type, and in analyses of AA+ with SCT only. Our findings suggest a novel hypothesis for disparities in cancer outcomes.

A Brochure to Improve Understanding of Incomplete Mammogram Results Among Black Women at a Public Hospital in Miami, Florida.

OBJECTIVES: Black women are at increased risk of being called back for additional studies after a screening mammogram. With focus group input, we developed a brochure to improve awareness of the frequency of abnormal results. This study explored the brochure's acceptability and effect on understanding risk and breast cancer fears among black mammography patients at an urban safety-net breast imaging center in Miami, Florida. METHODS: A randomized controlled trial of the brochure (plus the standard result notification letter) versus usual care (standard notification letter alone). Black English-speaking women with an incomplete mammography result were randomized to the intervention or control group. Consenting participants completed a telephone questionnaire. Outcomes included awareness of result, anxiety level, and brochure acceptability. The χ2 or Fisher exact test was used and a univariate logistic regression was performed for intervention and control odds ratios. RESULTS: A total of 106 women were randomly selected to receive the brochure plus the letter or the letter alone. One chose to opt out; a minimum of three attempts were made to reach each of the remaining 105 women by telephone. Verbal communication was established with 59 of the randomized women, and 51 of those women agreed to participate in a survey to evaluate the brochure. There was no significant difference between the surveyed groups in knowledge of the result and follow-up plan. Surveyed intervention subjects were more likely to agree that "it is very common for women to have to follow up after a mammogram" (odds ratio [OR] 25.91, P = 0.029) and less likely to agree with the statement "getting a follow-up mammogram is scary" (OR 0.24, P = 0.021). Most intervention subjects said the pamphlet helped them understand their result "a lot" (79%, 19) and viewed it as "extremely" or "mostly" clear (96%, 23). Intervention subjects also voiced greater awareness of a telephone number they could call for more information about cancer (OR 11.38, P = 0.029). CONCLUSIONS: A culturally tailored brochure explaining the frequency of abnormal mammograms was well received by women at a large safety-net health system. Pilot testing suggests that it may improve patient perception of risk and awareness of informational resources. This strategy should be considered to enhance result communication.

Concordance of cancer registry and self-reported race, ethnicity, and cancer type: a report from the American Cancer Society's studies of cancer survivors.

PURPOSE: To examine the concordance between cancer registry and self-reported data for race, Hispanic ethnicity, and cancer type in the American Cancer Society's Studies of Cancer Survivors (SCS) I and II. METHODS: We calculated sensitivity, specificity, positive predictive value, and Kappa statistics for SCS-I and II. The gold standard for cancer type was registry data and for race and ethnicity was self-reported questionnaire data. RESULTS: Among 6,306 survivors in SCS-I and 9,170 in SCS-II, overall agreement (Kappa) for cancer type was 0.98 and 0.99, respectively. Concordance was strongest for breast and prostate cancer (Sensitivity ≥ 0.98 in SCS-I and II). For race, Kappa was 0.85 (SCS-I) and 0.93 (SCS-II), with strong concordance for white (Sensitivity = 0.95 in SCS-I and 0.99 in SCS-II) and black survivors (Sensitivity = 0.94 in SCS-I and 0.99 in SCS-II), but weak concordance for American Indian/Alaska Native (Sensitivity = 0.23 in SCS-I and 0.19 in SCS-II) and Asian/Pacific Islander survivors (Sensitivity = 0.43 in SCS-I and 0.87 in SCS-II). Agreement was moderate for Hispanic ethnicity (Kappa = 0.73 and 0.71; Sensitivity = 0.74 and 0.76, in SCS-I and SCS-II, respectively). CONCLUSIONS: We observed strong concordance between cancer registry data and self-report for cancer type in this national sample. For race and ethnicity, however, concordance varied significantly, with the poorest concordances observed for American Indian/Alaska Native and Asian/Pacific Islander survivors. Ensuring accurate recording of race/ethnicity data in registries is crucial for monitoring cancer trends and addressing cancer disparities among cancer survivors.

Fear of Mastectomy Associated with Delayed Breast Cancer Presentation Among Ghanaian Women.

BACKGROUND: Breast cancer is the leading cause of cancer mortality among women globally. Most women in Ghana present with advanced stage disease. The aim of this study is to characterize sociocultural factors associated with delayed presentation. MATERIALS AND METHODS: Qualitative study (grounded theory, constant comparative method) using individual in-depth interviews with breast cancer patients seen at the Korle Bu Teaching Hospital in Accra, Ghana. Interviews were conducted in English and three local languages. We achieved theoretical saturation with 31 participants. RESULTS: The mean length of delay reported by patients was approximately 1 year. Five recurrent themes were related to delayed presentation: (a) Women with a confirmed breast cancer diagnosis delay treatment because of the fear of mastectomy due to self and societal stigma; (b) role of the church as a social support system given the societal stigma associated with breast cancer; (c) study participants expressed some awareness of breast cancer, but with varying depths of breast cancer knowledge encompassing both myths and misconceptions about breast cancer; (d) most patients present late because they do not associate a "painless" breast lump with possible breast malignancy; and (e) delayed presentation linked to significant financial burden associated with breast cancer treatment. CONCLUSION: Despite current efforts to increase breast cancer awareness, the fear of mastectomy remains one of the main reasons for delayed presentation. Successful breast cancer education programs will need to be framed within the broader sociocultural dimensions of femininity that address some of the stigma associated with mastectomy reported in the Ghanaian context. IMPLICATIONS FOR PRACTICE: Most women in Ghana present with advanced-stage disease. The aim of this study was to characterize sociocultural factors associated with delayed presentation. Although several quantitative studies have been conducted on delays in presentation in sub-Saharan Africa (SSA), this study is one of the few to identify fear of mastectomy as a reason for delayed presentation. Anecdotal data from current clinical experiences in SSA suggest that this is still an issue that has not been adequately reported and addressed in most SSA countries. The research results presented here will hopefully guide health providers and national organizations in designing breast cancer education programs in Ghana and other parts of SSA.