Hodgkin lymphoma survivor perspectives on their engagement in treatment decision-making and discussion of late effects.

BACKGROUND: Hodgkin lymphoma has a bimodal age distribution with the first peak occurring within young adulthood and the second, among older adults. Although current therapy provides excellent disease control, survivors are at risk of developing treatment-related late effects (LEs). We sought to understand how survivors in active survivorship care perceived their role in treatment decision-making and when they acquired an understanding of LEs. METHODS: Semi-structured interviews were conducted until saturation was reached. Themes were identified through direct content analysis and consensus coding by a multidisciplinary team of coders, including hematology/oncology providers, patient navigators, and survivor stakeholders. RESULTS: Seventeen interviews were conducted. Role in initial treatment decision-making fluctuated between passive and active engagement with providers identified as being crucial to this process. Half of interviewees (53%) expressed unmet information needs. Survivors reported having learned about LEs at multiple time points, spanning from before treatment commenced through when a LE was diagnosed. The majority (71%) expressed a desire to have learned about LEs before initial treatment ended. The impact of cancer and fertility discussions were also disclosed. DISCUSSION: Participants highlighted the importance of discussions on LEs early in the care continuum. These preliminary data will be incorporated in a planned treatment decision-making tool that incorporates information on potential LEs. IMPLICATIONS FOR CANCER SURVIVORS: Patient-centered communication approaches should be embraced to assist in treatment decision-making, while considering long-term health consequences. Survivors must be educated on their risk of LEs and encouraged to disclose their perspectives and preferences with their providers to optimize outcomes.

Enhancing patients' understanding of and adherence to oral anticancer medication: Results of a longitudinal pilot intervention.

BACKGROUND: Oral anticancer medications (OAM) make administration more convenient for patients, but shifts the responsibility of care from clinical providers to the patients themselves. Following an institutional pilot study showing inadequate understanding and adherence among vulnerable patients taking OAM, a longitudinal intervention was developed using an oncology specialty pharmacist and medication navigators to enhance OAM understanding and adherence. METHODS: Patients initiating OAM were approached for four formalized teaching and check-in sessions, supplemented with medication information sheets and individualized calendars. At each session, participants were assessed on their OAM understanding and adherence using teach-back and validated measures. A study evaluation elicited feedback from participants on the usefulness of the intervention. RESULTS: Of 80 eligible patients, 58 (72.5%) received formal OAM teaching from the specialty pharmacist. Of those, 54 (93.1%) enrolled in the study with 39 (72%) completing the intervention for final analysis. At study completion, all participants adequately understood OAM taking, but 41.0% had inadequate understanding of OAM handling. Throughout the study, participants reported issues that were addressed by the intervention team (28.2% to 31.6%) as well as those requiring additional assistance from the treatment team (26.3% to 38.5%), Most participants found the intervention to be very beneficial (initial evaluation, 86.5%; final evaluation, 76.9%). CONCLUSIONS: This pilot intervention addressed gaps identified by our institutional assessment through formalized OAM teaching and follow-up. Improved understanding of taking and handling OAM through this subsequent study illustrated the enhanced effect of a multidisciplinary and multicomponent intervention to better educate and support patients on OAM.

Assessment of patients' understanding of and adherence to oral anticancer medication (OAM): Results of a cross-sectional institutional pilot study.

BACKGROUND: Although oral anticancer medications (OAM) provide opportunity for treatment at home, challenges include prescription filling, monitoring side effects, safe handling, and adherence. We assessed understanding of and adherence to OAM in vulnerable patients. METHODS: This 2018 pilot study defined vulnerable patients based on Chinese language, older age (≥65 years), and subsidized insurance. All participants had a cancer diagnosis and were taking an OAM filled through the hospital's specialty pharmacy. Participants reported on OAM taking (days per week, times per day, special instructions) and handling (handling, storage, disposal). The specialty pharmacist classified patient-reported responses about OAM taking and handling as adequate or inadequate. OAM regimens were classified by complexity. RESULTS: Of 61 eligible patients, 55 participated. Mean age was 68 years (standard deviation [SD] = 12) and 53% were female. Patient subgroups were: 27% Chinese, 64% ≥65 years, and 9% subsidized insurance. Forty-nine percent were on frontline therapy and median time on OAM was 1 year (Quartile 1 = 0.4, Quartile 3 = 1.7). Adequacy of OAM taking (30%) and handling (15%) were low; 15% had adequacy in both. Adequacy of OAM taking and handling did not vary by patient subgroup or regimen complexity. Mean patient-reported adherence was high (5.4, SD = 1, possible range 1-6) and did not vary by adequacy of OAM taking or handling. CONCLUSIONS: Understanding of OAM taking and handling in this group of vulnerable patients was low and did not align with patient-reported adherence. Future interventions should ensure that patients understand how to safely take and handle OAM, thereby optimizing their therapeutic potential.

Clusters of pain trajectories among patients with sickle cell disease hospitalized for vaso-occlusive crisis: a data-driven approach.

BACKGROUND: Vaso-occlusive crises (VOC) are the hallmark of sickle cell disease (SCD), with higher severity among hospitalized patients. Clustering hospitalizations with similar pain trajectories could identify vulnerable patient subgroups. Aims were to (1) identify clusters of hospitalizations based on pain trajectories; (2) identify factors associated with these clusters; and (3) determine the association between these clusters and 30-day readmissions. METHODS: We retrospectively included 350 VOC hospitalizations from 2013-2016 among 59 patients. Finite mixture modeling identified clusters of hospitalizations from intercepts and slopes of pain trajectories during the hospitalization. Generalized estimating equations for multinomial and logistic models were used to identify factors associated with clusters of hospitalizations based on pain trajectories and 30-day readmissions, respectively, while accounting for multiple hospitalizations per patient. RESULTS: Three clusters of hospitalizations based on pain trajectories were identified: slow (n=99), moderate (n=207), and rapid (n=44) decrease in pain scores. In multivariable analysis, SCD complications, female gender, and affective disorders were associated with clusters with slow or moderate decrease in pain scores (compared to rapid decrease). Although univariate analysis found that the cluster with moderate decrease in pain scores was associated with lower odds of 30-day readmissions compared to the cluster with slow decrease, it was non-significant in multivariable analysis. SCD complications were associated with higher odds of 30-day readmissions and older age was associated with lower odds of 30-day readmissions. CONCLUSIONS: Our results highlight variability in pain trajectories among patients with SCD experiencing VOC and provide a novel approach for identifying subgroups of patients that could benefit from more intensive follow-up.

Patterns of healthcare utilization among patients with sickle cell disease hospitalized with pain crises.

BACKGROUND: Vaso-occlusive crises (VOC) are the hallmark of sickle cell disease (SCD). Adults experiencing VOC often have high rates of unexpected healthcare utilization. We characterized prior and future healthcare utilization among adults hospitalized with VOC at an urban, academic medical center. METHODS: We identified 449 VOC hospitalizations among 63 patients from 2013 to 2016. Patients were categorized based on receiving established care at the medical center and prior utilization: (a) not established (n = 21); (b) newly established (n = 10); (c) established with low utilization in past 12 months (<4 VOC hospitalizations) (n = 22); and (d) established with high utilization in past 12 months (≥4 VOC hospitalizations) (n = 10). Patient and hospitalization characteristics and future utilization were compared across categories. RESULTS: Median age was 26 years (Q1 = 22, Q3 = 29) and 55.6% were female. Established patients with high prior utilization tended to have higher median pain scores at admission (10, P = .08). Thirty-day readmissions were highest in established patients with high prior utilization (P = .06), but 30-day clinic visits were highest in established patients with low prior utilization (P = .08). Adjusted linear regression found that newly established patients (ß = -4.6, P < .01) and established patients with low prior utilization (ß = -5.6, P < .01) had fewer VOC hospitalizations in the ensuing 12 months than established patients with high prior utilization. CONCLUSION: Among patients with SCD hospitalized for VOC, there was heterogeneity in healthcare utilization, with persistence in utilization over time for some patients. Efforts are needed to shift care from the acute setting to the outpatient clinic, which may lead to improved outcomes.

Crystal structures of green fluorescent protein with the unnatural amino acid 4-nitro-L-phenylalanine.

The X-ray crystal structures of two superfolder green fluorescent protein (sfGFP) constructs containing a genetically incorporated spectroscopic reporter unnatural amino acid, 4-nitro-L-phenylalanine (pNO2F), at two unique sites in the protein have been determined. Amber codon-suppression methodology was used to site-specifically incorporate pNO2F at a solvent-accessible (Asp133) and a partially buried (Asn149) site in sfGFP. The Asp133pNO2F sfGFP construct crystallized with two molecules per asymmetric unit in space group P3221 and the crystal structure was refined to 2.05 Šresolution. Crystals of Asn149pNO2F sfGFP contained one molecule of sfGFP per asymmetric unit in space group P4122 and the structure was refined to 1.60 Šresolution. The alignment of Asp133pNO2F or Asn149pNO2F sfGFP with wild-type sfGFP resulted in small root-mean-square deviations, illustrating that these residues do not significantly alter the protein structure and supporting the use of pNO2F as an effective spectroscopic reporter of local protein structure and dynamics.