Novel uses for implanted haemodynamic monitoring in adults with subaortic right ventricles.

BACKGROUND: Pulmonary hypertension (PH) is a common complication in patients with complete dextro-transposition of the great arteries (TGA) after atrial switch (D-TGA/AS) and congenitally corrected TGA (ccTGA). In this population with subaortic right ventricles (sRVs), echocardiography is a poor screening tool for PH; implantable invasive haemodynamic monitoring (IHM) could be used for this purpose, but data are limited. The aim of this study is to report on novel uses of IHM in patients with sRV. METHODS: This retrospective study describes the uses of IHM, impact of IHM on heart failure hospitalisation (HFH) and device-related complications in adults with sRV from a single centre (2015-2022). RESULTS: IHM was placed in 18 patients with sRV (median age 43 (range 30-54) years, 8 female, 16 with D-TGA/AS, 2 with ccTGA); 16 had moderate or severe sRV systolic dysfunction, 13 had PH on catheterisation. IHM was used for (1) Medical therapy titration, (2) Medical management after ventricular assist device in patients with transplant-limiting PH and (3) Serial monitoring of pulmonary artery pressures without repeat catheterisations to help identify the optimal time for heart transplant referral. In follow-up (median 23 months), HFHs/year were similar to the year prior to IHM (median 0 (IQR 0-1.0) before vs 0 (0-0.8) after, p=0.984). Device migration occurred in one, without long-term sequelae. CONCLUSIONS: Uses of IHM in patients with sRV are described which may minimise the need for serial catheterisations in a population where PH is prevalent. HFHs were low overall but not impacted by IHM. One device-related complication occurred without long-term consequence.

Health-Related Quality of Life Declines Over 3 Years for Congenital Heart Disease Survivors.

BACKGROUND: Because of medical advancements, many congenital heart disease (CHD) survivors are relatively symptom-free until adulthood, at which time complications may occur. Worsening health status likely drives a change in patient-reported outcomes, such as health-related quality of life (HRQoL), although change in HRQoL has not been investigated among adolescent and young adult CHD survivors. OBJECTIVE: The aims of the current mixed cross-sectional and longitudinal study were to (1) examine changes in HRQoL over 3 years and (2) identify any demographic (age, sex, estimated family income, and distance from medical center) and medical predictors (functional status and number of cardiac-related medications) of that change. METHODS: Baseline and 3-year follow-up data were obtained via an online survey of 172 CHD survivors (15-39 years old at baseline; 25% simple, 45% moderate, 30% complex) recruited from a pediatric hospital and an adult hospital. Medical predictors were abstracted from electronic medical records. RESULTS: After controlling for New York Heart Association functional class, mixed-effects models identified significant declines in all subscales of the Research and Development Corporation 36-Item Health Survey 1.0 across the 3-year timeframe. A lower estimated family income (≤$35 000) predicted more decline in physical functioning (b = 0.5, 95% confidence interval, 0.2-0.8; P = .001) and emotional functioning (b = 0.3, 95% confidence interval, 0.1-0.5; P = .017). No other significant demographic or medical predictors were identified. CONCLUSIONS: Study findings highlight the importance of tracking patient-reported outcomes over time, suggesting that medical staff should discuss HRQoL with CHD survivors during late adolescence and early adulthood before decline.

Perspectives of Survivorship Care Plans Among Older Breast Cancer Survivors: A Pilot Study.

The Commission on Cancer's standard 3.3 represents a paradigm shift in the care of cancer survivors, recommending that survivors receive a treatment summary and survivorship care plan (SCPs). A focus on older breast cancer survivors is needed, as they are the majority of the breast cancer population and their experiences and perspectives of SCPs is limited in the literature. This pilot study utilized a mixed methods approach (focus groups and self-report questionnaire data) to gather information on older (≥65 years) breast cancer survivors' perspectives of their SCPs, cancer survivorship, and communication with their health-care providers. The questionnaire was completed individually by the participants prior to the focus group and contained items on basic demographics and their health status following cancer treatment. The focus groups indicated that only a minority of women actually developed a SCP. Those who developed a SCP in collaboration with their providers valued the personal care and attention received. However, some participants reported poor communication with their providers and within their health-care team, resulting in frustration and confusion. Participants' suggestions for ideal SCPs included better education and personalization, particularly in appropriate nutrition and exercise, and managing side effects and comorbidities. Lastly, the women believed that additional long-term care resources, such as health coaches, were important in improving their survivorship. These findings provide insight into enhancing the content, communication, and application of SCPs to improve the survivorship experience of older breast cancer survivors.

Primary care physicians' perspectives of the survivorship care for older breast cancer survivors: a pilot study.

PURPOSE: To evaluate primary care physicians' (PCPs) role in survivorship care of older breast cancer survivors, their experiences and opinions of survivorship care plans (SCPs), and suggestions for improving care coordination and facilitation of SCPs among older (≥ 65 years) breast cancer survivors. METHODS: A web-based questionnaire was completed individually by PCPs about their training and what areas of survivorship they address under their care. A subset of survey participants were interviewed about survivorship care, care coordination, and the appropriateness and effects of SCPs on older breast cancer survivors' outcomes. RESULTS: Physician participants (N = 29) had an average of 13.5 years in practice. PCPs surveyed that their main role was to provide general health promotion and their least common role was to manage late- and/or long-term effects. Semi-structured interviews indicated that the majority of PCPs did not receive a SCP from their patients' oncologists and that communication regarding survivorship care was poor. Participants' suggestions for improvements to SCPs and survivorship care included regular communication with oncologists, delegation from oncologists regarding roles, and mutual understanding of each other's roles. CONCLUSION: PCPs indicated that survivorship care and SCPs should be improved, regarding communication and roles related to their patients' survivorship. PCPs should assume an active role to enhance PCP-oncologist communication. Future research in PCPs' role in survivorship care in a broad, diverse cancer survivor population is warranted. IMPLICATIONS FOR CANCER SURVIVORS: More attention needs to focus on the importance of PCPs, as they are an integral part of dual management for older breast cancer survivors post-treatment.

Racial disparities in clinic follow-up early in life among survivors of congenital heart disease.

OBJECTIVE: The current study aims to identify the rates of lapses in care and loss to follow-up before age one through age five for white and nonwhite congenital heart disease (CHD) survivors. Nonwhite CHD survivors were hypothesized to experience an earlier lapse in care and be lost to follow-up than whites. DESIGN: Patients were from a large pediatric hospital and had (1) at least one outpatient cardiology clinic visit or cardiac surgery visit before the age of one and (2) a diagnosis of moderate or complex structural CHD. Cardiology outpatient utilization rates were tracked from before age one through age five. Lapse in follow-up was defined as not having at least one outpatient cardiology visit per year, and loss to follow-up was not returning after a lapse in care by age five. Race was categorized as white and nonwhite. Covariates included sex, insurance type, noncardiology inpatient and outpatient hospital utilization, and CHD severity. RESULTS: The sample included 1034 patients. Overall, 75.7% experienced a lapse in care with only 41.6% of those returning by age five. Nonwhites experienced lapses in care at younger ages than whites. Nonwhites had a 53% increased risk of lapse in care. Medicaid patients and those with moderate CHD diagnoses also had an increased risk for lapse in care. CONCLUSIONS: Lapse in care appears prevalent among CHD survivors by age five, with nonwhites demonstrating elevated risk. Future multisite prospective studies should include the assessment of parental knowledge, barriers to accessing care, and satisfaction with care.

Characterizing Time to Diagnostic Resolution After an Abnormal Cancer Screening Exam in Older Adult Participants in the Ohio Patient Navigation Research Program.

OBJECTIVE: This study aims to test the effectiveness of a patient navigation (PN) intervention to reduce time to diagnostic resolution among older adults age ≥65 years versus those <65 years with abnormal breast, cervical, or colorectal cancer screening exams participating in the Ohio Patient Navigation Research Program (OPNRP). METHOD: The OPNRP utilized a nested cohort group-randomized trial design to randomize 862 participants ( n = 67 for ≥65 years; n = 795 for <65 years) to PN or usual care conditions. A shared frailty Cox model tested the effect of PN on time to resolution. RESULTS: Older adult participants randomized to PN achieved a 6-month resolution rate that was 127% higher than those randomized to usual care ( p = .001). This effect was not significantly different from participants <65 years. DISCUSSION: PN significantly reduced time to diagnostic resolution among older adults beginning 6 months after an abnormal cancer screening exam. Health care systems should include this population in PN programs to reduce cancer disparities.