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1.
Curr Oncol Rep ; 26(7): 773-783, 2024 Jul.
Article in English | MEDLINE | ID: mdl-38777979

ABSTRACT

PURPOSE OF REVIEW: Family/unpaid caregivers play an important role in cancer care. This review aims to summarize caregiver communication experiences with healthcare professionals (HCPs). RECENT FINDINGS: The Caregiver-Centered Communication model defines five core functions that HCPs should achieve when interacting with caregivers, including fostering relationships, exchanging information, recognizing and responding to caregiver emotions, aiding in decision making, and assisting in patient care management. The literature shows that caregivers have both positive and negative communication experiences with HCPs with respect to these five core functions. Factors at the caregiver (e.g., demographic characteristics, information sources, caregiving duration, health status), patient (e.g., demographic and clinical characteristics), and HCP levels (e.g., time constraints in clinical settings, communication skills) are associated with caregiver-HCP communication quality. Studies further show that these communication experiences may affect caregiver outcomes, including quality of life, mental health, resilience, and satisfaction with cancer care. Moreover, poor quality caregiver-HCP communication is associated with patient readmission to the hospital and unmet care needs. Interventions for caregivers or patient-caregiver dyads have been shown to enhance caregiver confidence and increase their engagement in communication with HCPs. Interventions for HCPs have shown efficacy in improving their communication skills, particularly in involving caregivers in decision-making discussions. Given time constraints during medical visits, we suggest conducting a caregiver assessment by navigators prior to visits to understand their communication needs. Additionally, reimbursing HCPs for time spent communicating with caregivers during visits could be beneficial. More research is needed to better understand how to enhance caregiver-HCP communication quality.


Subject(s)
Caregivers , Communication , Health Personnel , Neoplasms , Humans , Caregivers/psychology , Neoplasms/psychology , Neoplasms/therapy , Health Personnel/psychology , Quality of Life , Adult
2.
Plant Dis ; 2024 Apr 03.
Article in English | MEDLINE | ID: mdl-38568787

ABSTRACT

Stem rot caused by Sclerotinia sclerotiorum is a serious, and sometimes devastating, disease of lupin (Lupinus spp.). Two hundred and thirty-six lupin accessions from across 12 Lupinus species were screened against the prevalent S. sclerotiorum isolate MBRS-1 (pathotype 76). L. angustifolius accession 21655 and L. albus var. albus accession 20589 showed immune and 'near-immune' responses, respectively. Thirteen accessions of L. angustifolius, three accessions each of L. albus and L. albus var. albus, and a single accession each of L. albus var. graecus, L. mutabilis, L. palaestinus and L. pilosus (totalling ~4%) showed a highly resistant (HR) response. A further 19 accessions of L. angustifolius, two accessions each of L. albus and L. pilosus, and a single accession of L. mutabilis (totalling ~10%) showed a resistant (R) response. The reactions of 16 (15 L. angustifolius, one L. digitatus) of these 236 accessions were also compared with their reactions to a different isolate, WW-3 (pathotype 10). Against this isolate, five L. angustifolius accessions showed a HR response and four showed a R response, and the L. digitatus accession showed a moderate resistance (MR) response. Overall, isolate WW-3 caused significantly (P<0.05) smaller lesions than MBRS-1 across tested accessions in common. In addition, 328 plants in a 'wild' naturalized field population of L. cosentini were screened in situ in the field against isolate MBRS-1. Five (~1.5%) of the 328 plants of wild lupin showed an immune response, 63 (~19%) showed a HR response, and 146 (~45%) showed a R response. We believe this is the first examination of diverse Lupinus spp. germplasm responses to a prevalent pathotype of S. sclerotiorum. Lupin genotypes exhibiting high level resistance to Sclerotinia stem rot identified in this study can now be used as parental lines for crosses in lupin breeding programs and/or directly as improved cultivars to reduce the adverse impact of this disease on lupin crops.

3.
Gut ; 73(1): 118-130, 2023 Dec 07.
Article in English | MEDLINE | ID: mdl-37739777

ABSTRACT

BACKGROUND AND AIMS: International endoscopy societies vary in their approach for credentialing individuals in endoscopic ultrasound (EUS) to enable independent practice; however, there is no consensus in this or its implementation. In 2019, the Joint Advisory Group on GI Endoscopy (JAG) commissioned a working group to examine the evidence relating to this process for EUS. The aim of this was to develop evidence-based recommendations for EUS training and certification in the UK. METHODS: Under the oversight of the JAG quality assurance team, a modified Delphi process was conducted which included major stakeholders from the UK and Ireland. A formal literature review was made, initial questions for study were proposed and recommendations for training and certification in EUS were formulated after a rigorous assessment using the Grading of Recommendation Assessment, Development and Evaluation tool and subjected to electronic voting to identify accepted statements. These were peer reviewed by JAG and relevant stakeholder societies before consensus on the final EUS certification pathway was achieved. RESULTS: 39 initial questions were proposed of which 33 were deemed worthy of assessment and finally formed the key recommendations. The statements covered four key domains, such as: definition of competence (13 statements), acquisition of competence (10), assessment of competence (5) and postcertification mentorship (5). Key recommendations include: (1) minimum of 250 hands-on cases before an assessment for competency can be made, (2) attendance at the JAG basic EUS course, (3) completing a minimum of one formative direct observation of procedural skills (DOPS) every 10 cases to allow the learning curve in EUS training to be adequately studied, (4) competent performance in summative DOPS assessments and (5) a period of mentorship over a 12-month period is recommended as minimum to support and mentor new service providers. CONCLUSIONS: An evidence-based certification pathway has been commissioned by JAG to support and quality assure EUS training. This will form the basis to improve quality of training and safety standards in EUS in the UK and Ireland.


Subject(s)
Clinical Competence , Educational Measurement , Humans , Ireland , Endoscopy, Gastrointestinal , Certification , United Kingdom
4.
Support Care Cancer ; 31(12): 636, 2023 Oct 17.
Article in English | MEDLINE | ID: mdl-37847423

ABSTRACT

PURPOSE: To describe emotional barriers and facilitators to deprescribing (the planned reduction or discontinuation of medications) in older adults with cancer and polypharmacy. METHODS: Virtual focus groups were conducted over Zoom with 5 key informant groups: oncologists, oncology nurses, primary care physicians, pharmacists, and patients. All groups were video- and audio-recorded and transcribed verbatim. Focus group transcripts were analyzed using inductive content analysis, and open coding was performed by two coders. A codebook was generated based on the initial round of open coding and updated throughout the analytic process. Codes and themes were discussed for each transcript until consensus was reached. Emotion coding (identifying text segments expressing emotion, naming the emotion, and assigning a label of positive or negative) was performed by both coders to validate the open coding findings. RESULTS: All groups agreed that polypharmacy is a significant problem. For clinicians, emotional barriers to deprescribing include fear of moral judgment from patients and colleagues, frustration toward patients, and feelings of incompetence. Oncologists and patients expressed ambivalence about deprescribing due to role expectations that physicians "heal with med[ication]s." Emotional facilitators of deprescribing included the involvement of pharmacists, who were perceived to be neutral, discerning experts. Pharmacists described emotionally aware communication strategies when discussing deprescribing with other clinicians and expressed increased awareness of patient context. CONCLUSION: Deprescribing can elicit strong and predominantly negative emotions among clinicians and patients which could inhibit deprescribing interventions. The involvement of pharmacists in deprescribing interventions could mitigate these emotional barriers. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT05046171 . Date of registration: September 16, 2021.


Subject(s)
Deprescriptions , Neoplasms , Humans , Aged , Polypharmacy , Attitude of Health Personnel , Emotions , Neoplasms/drug therapy
5.
Planta ; 255(2): 51, 2022 Jan 27.
Article in English | MEDLINE | ID: mdl-35084593

ABSTRACT

MAIN CONCLUSION: Australian native species of sorghum contain negligible amounts of dhurrin in their leaves and the cyanogenesis process is regulated differently under water-stress in comparison to domesticated sorghum species. Cyanogenesis in forage sorghum is a major concern in agriculture as the leaves of domesticated sorghum are potentially toxic to livestock, especially at times of drought which induces increased production of the cyanogenic glucoside dhurrin. The wild sorghum species endemic to Australia have a negligible content of dhurrin in the above ground tissues and thus represent a potential resource for key agricultural traits like low toxicity. In this study we investigated the differential expression of cyanogenesis related genes in the leaf tissue of the domesticated species Sorghum bicolor and the Australian native wild species Sorghum macrospermum grown in glasshouse-controlled water-stress conditions using RNA-Seq analysis to analyse gene expression. The study identified genes, including those in the cyanogenesis pathway, that were differentially regulated in response to water-stress in domesticated and wild sorghum. In the domesticated sorghum, dhurrin content was significantly higher compared to that in the wild sorghum and increased with stress and decreased with age whereas in wild sorghum the dhurrin content remained negligible. The key genes in dhurrin biosynthesis, CYP79A1, CYP71E1 and UGT85B1, were shown to be highly expressed in S. bicolor. DHR and HNL encoding the dhurrinase and α-hydroxynitrilase catalysing bio-activation of dhurrin were also highly expressed in S. bicolor. Analysis of the differences in expression of cyanogenesis related genes between domesticated and wild sorghum species may allow the use of these genetic resources to produce more acyanogenic varieties in the future.


Subject(s)
Sorghum , Australia , Edible Grain , Nitriles , Sorghum/genetics , Water
6.
Psychooncology ; 31(6): 1041-1049, 2022 06.
Article in English | MEDLINE | ID: mdl-35112424

ABSTRACT

OBJECTIVE: One primary source of psychological distress in patients with cancer and their caregivers is uncertainty. However, the uncertainty trajectory and its relationship between older adults with advanced cancer and their caregivers have rarely been examined. This study describes the uncertainty trajectory in patient-caregiver dyads, explores the effect of geriatric assessment (GA) intervention on trajectory, and examines the interdependent relationship of uncertainty. METHODS: This secondary analysis used longitudinal data from a national cluster-randomized controlled trial examining a GA intervention compared to usual care. Participants completed the modified 9-item Mishel Uncertainty in Illness Scale at enrollment, 4-6 weeks, 3 months, and 6 months. The dyadic growth model and cross-lagged actor-partner interdependence model were used. RESULTS: A total of 397 dyads (patient age M = 76.81 ± SD5.43; caregiver age M = 66.69 ± SD12.52) were included. Both had a trend of decreased uncertainty over time (b = -0.16, p < 0.01). There was a greater decrease in uncertainty among caregivers in the GA group than those in the usual care group (b = -0.46, p = 0.02). For both patients and caregivers, their past uncertainty was a significant predictor of their own current uncertainty (i.e., actor effect, p < 0.01). The individual's past uncertainty was a significant predictor of the other dyad member's current uncertainty (i.e., partner effect, p < 0.05), indicating an interdependent relationship between patient and caregiver uncertainty over time. CONCLUSIONS: Findings suggest patient and caregiver function as a unit with uncertainty levels affecting each other. Future interventions could build on GA to address uncertainty for older patients with advanced cancer and caregivers.


Subject(s)
Caregivers , Neoplasms , Aged , Caregivers/psychology , Geriatric Assessment , Humans , Neoplasms/psychology , Neoplasms/therapy , Quality of Life/psychology , Uncertainty
7.
Physiol Mol Biol Plants ; 27(3): 563-576, 2021 Mar.
Article in English | MEDLINE | ID: mdl-33854284

ABSTRACT

Aluminium (Al) toxicity in acid soils inhibits root elongation and development causing reduced water and nutrient uptake by the root system, which ultimately reduces the crop yield. This study established a high throughput hydroponics screening method and identified Al toxicity tolerant accessions from a set of putative acid tolerant lentil accessions. Four-day old lentil seedlings were screened at 5 µM Al (pH 4.5) for three days in hydroponics. Measured pre and post treatment root length was used to calculate the change in root length (ΔRL) and relative root growth (RRG%). A subset of 15 selected accessions were used for acid soil Al screening, and histochemical and biochemical analyses. Al treatment significantly reduced the ΔRL with an average of 32.3% reduction observed compared to the control. Approximately 1/4 of the focused identification of germplasm strategy accessions showed higher RRG% than the known tolerant line ILL6002 which has the RRG% of 37.9. Very tolerant accessions with RRG% of > 52% were observed in 5.4% of the total accessions. A selection index calculated based on all root traits in acid soil screening was highest in AGG70137 (636.7) whereas it was lowest in Precoz (76.3). All histochemical and biochemical analyses supported the hydroponic results as Northfield, AGG70137, AGG70561 and AGG70281 showed consistent good performance. The identified new sources of Al tolerant lentil germplasm can be used to breed new Al toxicity tolerant lentil varieties. The established high throughput hydroponic method can be routinely used for screening lentil breeding populations for Al toxicity tolerance. Future recommendations could include evaluation of the yield potential of the selected subset of accessions under acid soil field conditions, and the screening of a wider range of landrace accessions originating from areas with Al toxic acid soils.

8.
Psychooncology ; 28(6): 1286-1292, 2019 06.
Article in English | MEDLINE | ID: mdl-31020758

ABSTRACT

OBJECTIVE: Clinicians frequently overestimate survival time among seriously ill patients, and this can result in medical treatment at end of life that does not reflect the patient's preferences. Little is known, however, about the sources of clinicians' optimistic bias in survival estimation. Related work in social networks and experimental psychology demonstrates that psychological states-such as optimism-can transfer from one person to another. METHODS: We directly observed and audio recorded 189 initial inpatient palliative care consultations among hospitalized patients with advanced cancer. Patients self-reported their level of trait optimism and expectations for survival prognosis prior to the palliative care consultation, and the palliative care clinicians rated their expectations for the patient's survival time following the initial conversation with the patient. We followed patient mortality for 6 months. RESULTS: Patient optimism was associated with clinician overestimation of their survival in a dose-response relationship. Clinicians were approximately three times as likely to overestimate the survival of patients endorsing both high trait optimism and optimistic ratings of their survival time compared with neither (OR: 2.95; 95% CI: 1.24-7.02). This association was not attenuated by adjustment for age, gender, race, ethnicity, education, income, cancer type, functional status, quality of life, or white blood cell count (ORadj : 3.45; 95% CI: 1.24-9.66). CONCLUSION: Patients' optimism may have some influence over their clinicians' prognostic judgments.


Subject(s)
Neoplasms/diagnosis , Neoplasms/psychology , Optimism , Palliative Care/psychology , Survival/psychology , Aged , Female , Humans , Male , Middle Aged , Prognosis , Quality of Life/psychology
9.
Support Care Cancer ; 27(7): 2525-2532, 2019 07.
Article in English | MEDLINE | ID: mdl-30411237

ABSTRACT

PURPOSE: Despite indications that lesbian, gay, bisexual, transgender, and queer (LGBTQ) patients have unique needs when seeking healthcare, the experiences of LGBTQ patients in the context of cancer care have not been fully explored. This qualitative study investigated recommendations offered by LGBTQ patients with cancer for improving cancer care. METHODS: Two hundred seventy-three LGBTQ people across the USA who had been diagnosed with cancer completed an online survey that included open-ended questions. Using responses to these questions, two researchers independently conducted open coding. A code book was generated collaboratively and the data were coded independently. Codes were clustered and refined and the data were independently re-coded. RESULTS: Five themes emerged. LGBTQ patients with cancer: (1) are affected by providers' LGBTQ-specific knowledge and skills, assumptions, and mistreatment; (2) negotiate disclosure of identities based on safety of clinical encounters; (3) have differing experiences based on multiple intersecting identities; (4) receive more effective care when members of their support networks are included; and (5) are self-advocates and undergo transformative experiences in the face of morbidity and marginalization. CONCLUSIONS: LGBTQ cancer survivors report challenges accessing competent cancer treatment. To address this, cancer care providers should provide safe clinical encounters, inquire about and respond professionally to patients' identities and identifiers, include chosen support people, provide care relevant to patients' gender identities, and address treatments' effects on sexuality. Training providers about diverse LGBTQ communities and acknowledging the strengths of LGBTQ patients with cancer may improve provider/patient relationships. Provider training could be created based on these principles.


Subject(s)
Neoplasms/psychology , Sexual Behavior/psychology , Sexual and Gender Minorities/psychology , Female , Humans , Male , Qualitative Research , Surveys and Questionnaires
10.
Med Care ; 56(1): 11-18, 2018 01.
Article in English | MEDLINE | ID: mdl-29068904

ABSTRACT

BACKGROUND: Deficits in end-of-life care in nursing homes (NHs) are reported, but the impact of palliative care teams (PCTeams) on resident outcomes remains largely untested. OBJECTIVE: Test the impact of PCTeams on end-of-life outcomes. RESEARCH DESIGN: Multicomponent strategy employing a randomized, 2-arm controlled trial with a difference-in-difference analysis, and a nonrandomized second control group to assess the intervention's placebo effect. SUBJECTS: In all, 25 New York State NHs completed the trial (5830 decedent residents) and 609 NHs were in the nonrandomized group (119,486 decedents). MEASURES: Four risk-adjusted outcome measures: place of death, number of hospitalizations, self-reported moderate-to-severe pain, and depressive symptoms. The Minimum Data Set, vital status files, staff surveys, and in-depth interviews were employed. For each outcome, a difference-in-difference model compared the pre-post intervention periods using logistic and Poisson regressions. RESULTS: Overall, we found no statistically significant effect of the intervention. However, independent analysis of the interview data found that only 6 of the 14 treatment facilities had continuously working PCTeams throughout the study period. Decedents in homes with working teams had significant reductions in the odds of in-hospital death compared to the other treatment [odds ratio (OR), 0.400; P<0.001), control (OR, 0.482; P<0.05), and nonrandomized control NHs (0.581; P<0.01). Decedents in these NHs had reduced rates of depressive symptoms (OR, 0.191; P≤0.01), but not pain or hospitalizations. CONCLUSIONS: The intervention was not equally effective for all outcomes and facilities. As homes vary in their ability to adopt new care practices, and in their capacity to sustain them, reforms to create the environment in which effective palliative care can become broadly implemented are needed.


Subject(s)
Nursing Homes , Palliative Care/methods , Patient Care Team , Patient Outcome Assessment , Terminal Care , Aged , Aged, 80 and over , Depression , Female , Hospitalization/statistics & numerical data , Humans , Male , New York , Pain , Surveys and Questionnaires
11.
J Asthma ; 55(12): 1315-1327, 2018 12.
Article in English | MEDLINE | ID: mdl-29351005

ABSTRACT

OBJECTIVES: A previous definition of adolescent asthma self-management was derived from interviews with clinicians/researchers and published literature; however, it did not incorporate perspectives of teens or parents. Therefore, we conducted in-depth interviews with teens and parents and synthesized present findings with the prior analysis to develop a more encompassing definition and model. METHODS: Focal concepts were qualitatively extracted from 14-day self-management voice-diaries (n = 14) and 1-hour interviews (n = 42) with teens and parents (28 individuals) along with concepts found in the previous clinical/research oriented analysis. Conceptual structure and relationships were identified and key findings synthesized to develop a revised definition and model of adolescent asthma self-management. RESULTS: There were two primary self-management constructs: processes of self-management and tasks of self-management. Self-management was defined as the iterative process of assessing, deciding, and responding to specific situations in order to achieve personally important outcomes. Clinically relevant asthma self-management tasks included monitoring asthma, managing active issues through pharmacologic and non-pharmacologic strategies, preventing future issues, and communicating with others as needed. Self-management processes were reciprocally influenced by intrapersonal factors (both cognitive and physical), interpersonal factors (family, social and physical environments), and personally relevant asthma and non-asthma outcomes. CONCLUSION: This is the first definition of asthma self-management incorporating teen, parent, clinician, and researcher perspectives, which suggests that self-management processes and behaviors are influenced by individually variable personal and interpersonal factors, and are driven by personally important outcomes. Clinicians and researchers should investigate teens' symptom perceptions, medication beliefs, current approaches to symptom management, relevant outcomes, and personal priorities.


Subject(s)
Asthma/drug therapy , Asthma/psychology , Self-Management/psychology , Adolescent , Age Factors , Asthma/therapy , Environment , Ethnicity , Family Relations/psychology , Female , Humans , Interviews as Topic , Male , Models, Psychological , Parents/psychology , Racial Groups , Self-Management/methods , Severity of Illness Index , Sex Factors , Social Environment , Socioeconomic Factors
12.
J Clin Ethics ; 29(3): 217-226, 2018.
Article in English | MEDLINE | ID: mdl-30226823

ABSTRACT

BACKGROUND: Moral distress (MD) is an emotional and psychological response to morally challenging dilemmas. Moral distress is experienced frequently by nurses in the intensive care unit (ICU) and can result in emotional anguish, work dissatisfaction, poor patient outcomes, and high levels of nurse turnover. Opportunities to discuss ethically challenging situations may lessen MD and its associated sequela. OBJECTIVE: The purpose of this project was to develop, implement, and evaluate the impact of nursing ethics huddles on participants' MD, clinical ethics knowledge, work satisfaction, and patient care among ICU nurses. SAMPLE AND SETTING: The sample, 32 nurses from three ICU settings in an 800-bed tertiary academic medical center, participated in six nursing ethics huddles over a two-month period. METHODS: Alvita K. Nathaniel's Theory of Moral Reckoning guided development of the nursing ethics huddle process. The Moral Distress Thermometer was administered at three data points: baseline level of MD, and pre- and post-huddle to determine changes in the subjects' level of MD. Focused content analysis was used to analyze qualitative responses from questionnaires about the subjects' perception of the effect of the huddles on work satisfaction and patient care. Knowledge attainment was evaluated via open-ended short-answer questions. RESULTS: Overall, use of nurse-ethicist-led nursing ethics huddles was associated with improved quality of work life, patient care, and clinical ethics knowledge. The change in pre- and post-nursing ethics huddles MD scores was statistically significant.


Subject(s)
Critical Care Nursing , Ethics Consultation , Morals , Nursing Staff, Hospital/psychology , Stress, Psychological/therapy , Ethics, Nursing/education , Humans , Intensive Care Units , Job Satisfaction , New York , Program Evaluation
13.
Palliat Support Care ; 16(4): 432-441, 2018 08.
Article in English | MEDLINE | ID: mdl-28701245

ABSTRACT

ABSTRACTObjective:While improvements in healthcare have resulted in children with complex and life-threatening conditions living longer, a proportion of them still die. The death of a child puts parents at increased risk for anxiety, depression, and complicated grief. Increasing our understanding of the coping strategies that parents use under such extreme circumstances will enable us to best provide support to families, before and after a child's death. Our aim herein was to develop a theoretical framework of parental coping. METHOD: Evidence from the literature was employed to develop a theoretical framework to describe parental coping in the context of having a child with a life-limiting illness who is declining and facing eventual death. RESULTS: The reasoning and argument consists of three guiding elements: (1) the importance of approach as well as avoidance (as coping strategies) in the context of managing the extreme emotions; (2) the importance of the social aspect of coping within a family, whereby parents cope for others as well as for themselves; and (3) the importance of a flexible and balanced coping profile, with parents using different coping strategies simultaneously. Central to the proposed framework is that effective coping, in terms of adjustment, is achieved by balancing coping strategies: accessing different coping strategies simultaneously or in parallel with a specific focus on (1) approach and avoidance and (2) coping aimed at self and others. SIGNIFICANCE OF RESULTS: Understanding of parental coping strategies is essential for health professionals in order to support parents effectively.


Subject(s)
Adaptation, Psychological , Attitude to Death , Parents/psychology , Adult , Female , Grief , Humans , Male , Social Support , Stress, Psychological/etiology , Stress, Psychological/psychology , Surveys and Questionnaires , Terminally Ill/psychology
14.
J Asthma ; 54(2): 143-152, 2017 03.
Article in English | MEDLINE | ID: mdl-27337035

ABSTRACT

BACKGROUND: Teens often have inadequate asthma self-management and control. However, little is known of their perceptions of or rationales for self-management behaviors. OBJECTIVES: To explore how teens self-manage asthma, including experiences, perceptions, responses to and reporting of symptoms. METHODS: A case-based, qualitative-descriptive design was used. Data were collected from minority and non-minority teens with controlled and uncontrolled asthma and their respective parents (N = 28). There were four data-collection points, including: (1) a primary teen interview; (2) parent interview; (3) 2-week self-management voice-diary; and (4) follow-up teen interview, incorporating symptom-response card-sorting to map symptoms and associated self-management responses. Seventy data sources were included in the analysis. RESULTS: Teens thought of their asthma symptoms as normal or unusual relative to their personal baseline symptom pattern; Those with uncontrolled asthma normalized higher levels of asthma symptoms than their counterparts with controlled asthma. Second, teens' decisions to treat symptoms of asthma with rescue medication were based on perceived benefits, burdens and accessibility of treatment balanced against perceived normalcy of symptoms. Teens with uncontrolled asthma had substantially higher treatment thresholds and delayed responses to symptoms compared to controlled peers. Third, teens never reported perceived normal symptoms of asthma to parents or providers, who were thus only aware of unusual or visible/audible symptoms. CONCLUSIONS: Teen's perceptions of symptoms and understanding of what is normal is the basis for self-management decisions. Improving self-management will likely entail modifying perceptions of symptoms and benefits/burdens of treatment to achieve healthier self-management patterns.


Subject(s)
Anti-Asthmatic Agents/therapeutic use , Asthma/drug therapy , Asthma/psychology , Medication Adherence/psychology , Self Care/psychology , Adolescent , Age Factors , Anti-Asthmatic Agents/administration & dosage , Female , Humans , Interviews as Topic , Male , Parents/psychology , Perception , Qualitative Research , Racial Groups , Severity of Illness Index , Sex Factors , Socioeconomic Factors
15.
BMC Palliat Care ; 14: 40, 2015 Aug 19.
Article in English | MEDLINE | ID: mdl-26286538

ABSTRACT

BACKGROUND: Understanding the characteristics of communication that foster patient-centered outcomes amid serious illness are essential for the science of palliative care. However, epidemiological cohort studies that directly observe clinical conversations can be challenging to conduct in the natural setting. We describe the successful enrollment, observation and data collection methods of the ongoing Palliative Care Communication Research Initiative (PCCRI). METHODS: The PCCRI is a multi-site cohort study of naturally occurring inpatient palliative care consultations. The 6-month cohort data includes directly observed and audio-recorded palliative care consultations (up to first 3 visits); patient/proxy/clinician self-report questionnaires both before and the day after consultation; post-consultation in-depth interviews; and medical/administrative records. RESULTS: One hundred fourteen patients or their proxies enrolled in PCCRI during Enrollment Year One (of Three). Seventy percent of eligible patients/proxies were invited to hear about a communication research study (188/269); 60% of them ultimately enrolled in the PCCRI (114/188), resulting in a 42% sampling proportion (114/269 eligible). All PC clinicians at study sites were invited to participate; all 45 participated. CONCLUSIONS: Epidemiologic study of patient-family-clinician communication in palliative care settings is feasible and acceptable to patients, proxies and clinicians. We detail the successful PCCRI methods for enrollment, direct observation and data collection for this complex "field" environment.


Subject(s)
Communication , Palliative Care/statistics & numerical data , Patient Selection , Research , Cohort Studies , Humans , Patient Outcome Assessment , Surveys and Questionnaires
16.
Cancer Nurs ; 47(1): E10-E17, 2024.
Article in English | MEDLINE | ID: mdl-36480347

ABSTRACT

BACKGROUND: Individuals with a strong family history of pancreatic cancer or a known hereditary cancer syndrome that is associated with pancreatic cancer are considered at high risk for developing pancreatic cancer. Living with a high risk for often fatal cancer is accompanied by high levels of uncertainty. Uncertainty is also independently associated with negative health outcomes. By understanding issues, sources, and responses to uncertainty, targeted supportive care strategies can be provided. OBJECTIVES: This study aimed to examine how uncertainty manifests in the experience of being at high risk to develop pancreatic cancer and to describe issues, sources of, and responses to uncertainty. METHODS: In this secondary qualitative descriptive study, we analyzed 19 interviews with persons living with inherited pancreatic cancer risk. Analysis was guided by a conceptual framework of uncertainty and responses to uncertainty. RESULTS: Participants described multiple personal, practical, and scientific issues of uncertainty, centering on what to expect for their future health. Participants also expressed positive and negative cognitive, emotional, and behavioral responses to uncertainty, including engaging in surveillance. Uncertainty sources were both individual experiences as well as perceptions of healthcare provider uncertainty with managing pancreatic cancer risk. CONCLUSION: Pancreatic cancer risk includes issues of uncertainty related to personal mortality, defining and managing risk, and experiencing surveillance. Positive and negative responses to this uncertainty could be targeted through interventions. IMPLICATION FOR PRACTICE: The oncology nurse should assess for sources of and responses to uncertainty in persons at risk for pancreatic cancer and offer psychosocial and educational support.


Subject(s)
Pancreatic Neoplasms , Humans , Uncertainty , Emotions , Risk
17.
Neurol Clin Pract ; 14(2): e200278, 2024 Apr.
Article in English | MEDLINE | ID: mdl-38455124

ABSTRACT

Background and Objectives: To assess the current structures, knowledge, and readiness to integrate palliative care (PC) into Parkinson disease (PD) care at Parkinson's Foundation Centers of Excellence (COE) in the United States. Methods: Three unique surveys were administered to health care professionals/staff at COEs to assess PC (1) resources, (2) knowledge and comfort, (3) clinical experience and processes, (4) barriers, and (5) readiness for implementation. Results: Response rates for the 3 surveys were 97%, 98%, and 56%. In total, 41% of COEs have access to outpatient PC specialists, 71% have mental health counseling, 82% have support groups, and 9% had very limited PC resources. Overall, 74% of providers believed persons with advanced PD should receive PC, and knowledge of PC fundamentals was good across providers. For high-needs persons with PD (PWP), only 16% of physicians and 24% of advanced practice providers made referrals to PC specialists ≥75% of the time, while 9% and 16% never made such referrals. Limited time, space, financing, and staffing were seen as major barriers to PC implementation. In total, 37% of providers were satisfied with their COE's ability to provide PC services. Most COEs report a culture open to change and appear well-positioned to implement PC in a more comprehensive fashion. Discussion: These results demonstrate the emergence of structures and processes to provide PC to persons with PD at COEs. They also identify concrete opportunities to strengthen integration of PC through educational, quality improvement, and advocacy efforts.

18.
J Geriatr Oncol ; 15(2): 101687, 2024 03.
Article in English | MEDLINE | ID: mdl-38302299

ABSTRACT

INTRODUCTION: Polypharmacy is prevalent in older adults with cancer and associated with multiple adverse outcomes. A single-site, cluster-randomized clinical trial will enroll older adults with cancer and polypharmacy starting chemotherapy and will assess the effectiveness and feasibility of deprescribing interventions by comparing two arms: a pharmacist-led deprescribing intervention and a patient educational brochure. MATERIALS AND METHODS: The study will be conducted in two phases. In phase I, focus groups and semi-structured individual interviews will guide adaptation of deprescribing interventions for the oncology clinic (phase Ia), and eight patients will undergo the pharmacist-led deprescribing intervention with iterative adaptations (phase Ib). In phase II, a pilot cluster-randomized trial (n = 72) will compare a pharmacist-led deprescribing intervention with a patient education brochure, with treating oncologists as the cluster. Both efficacy (relative dose intensity of planned chemotherapy, potentially inappropriate medications successfully deprescribed, chemotherapy toxicity, functional status, hospitalizations, falls, and symptoms) and implementation outcomes (barriers and facilitators) will be assessed. DISCUSSION: This study is anticipated to provide pilot data to inform a nationwide randomized clinical trial of deprescribing in older adults starting cancer treatment. The cluster randomization is intended to provide an initial estimate for the intervention effect as well as oncologists' intra-class correlation coefficient. Deprescribing interventions may improve outcomes in older adults starting cancer treatment, but these interventions are understudied in this population, and it is unknown how best to implement them into oncology practice. The results of this trial will inform the design of large, randomized phase III trials of deprescribing. CLINICALTRIALS: gov Identifier:NCT05046171. Date of registration: September 16, 2021.


Subject(s)
Neoplasms , Polypharmacy , Humans , Aged , Inappropriate Prescribing/prevention & control , Potentially Inappropriate Medication List , Hospitalization , Pharmacists , Neoplasms/drug therapy , Randomized Controlled Trials as Topic , Clinical Trials, Phase II as Topic
19.
Parkinsonism Relat Disord ; 119: 105982, 2024 Feb.
Article in English | MEDLINE | ID: mdl-38160602

ABSTRACT

INTRODUCTION: Outpatient palliative care offers an opportunity to improve the quality of life of Parkinson's disease (PD) patients and families. While there are efforts to improve clinicians' palliative care knowledge and skills, there is limited knowledge on patients and carepartners' knowledge and perceptions of palliative care. As part of a larger study on implementing outpatient palliative care, this study aimed to understand patients' and carepartners' knowledge and perceptions of palliative care, and their palliative care needs and preferences prior to the implementation. METHODS: Using qualitative descriptive research design, we completed semi-structured interviews with 47 patients and carepartners prior to the project implementation. De-identified transcripts of interviews were coded and analyzed. RESULTS: Five themes were identified that describe patients' and carepartners' palliative care knowledge, perceptions, needs and preferences: (a) Patients and carepartners have varied knowledge and perceptions of palliative care (b) Non-motor symptoms are challenging for patients and carepartners, (c) Addressing patients' grief and emotional needs is important to patients and carepartners, (d) Carepartners want a place for emotional care, well-being, and strategizing and (e) Patients and carepartners desire anticipatory guidance and care planning. Study participants desired guidance to manage non-motor symptoms, support for patients' emotional needs and for carepartners, and for anticipatory guidance to guide future planning. CONCLUSIONS: Despite varied palliative care knowledge, PD patients and carepartners universally desire care that addresses their palliative care needs. Palliative care education and integration of palliative care approaches into standard care may facilitate increased acceptance of outpatient palliative care throughout the disease trajectory.


Subject(s)
Palliative Care , Parkinson Disease , Humans , Parkinson Disease/therapy , Parkinson Disease/psychology , Quality of Life , Qualitative Research , Patients
20.
J Am Med Dir Assoc ; 25(1): 138-145.e6, 2024 Jan.
Article in English | MEDLINE | ID: mdl-37913819

ABSTRACT

OBJECTIVES: Medications with a higher risk of harm or that are unlikely to be beneficial are used by nearly all older patients in home health care (HHC). The objective of this study was to understand stakeholders' perspectives on challenges in deprescribing these medications for post-acute HHC patients. DESIGN: Qualitative individual interviews were conducted with stakeholders involved with post-acute deprescribing. SETTING AND PARTICIPANT: Older HHC patients, HHC nurses, pharmacists, and primary/acute care/post-acute prescribers from 9 US states participated in individual qualitative interviews. MEASURES: Interview questions were focused on the experience, processes, roles, training, workflow, and challenges of deprescribing in hospital-to-home transitions. We used the constant comparison approach to identify and compare findings among patient, prescriber, and pharmacist and HHC nurse stakeholders. RESULTS: We interviewed 9 older patients, 11 HHC nurses, 5 primary care physicians (PCP), 3 pharmacists, 1 hospitalist, and 1 post-acute nurse practitioner. Four challenges were described in post-acute deprescribing for HHC patients. First, PCPs' time constraints, the timing of patient encounters after hospital discharge, and the lack of prioritization of deprescribing make it difficult for PCPs to initiate post-acute deprescribing. Second, patients are often confused about their medications, despite the care team's efforts in educating the patients. Third, communication is challenging between HHC nurses, PCPs, specialists, and hospitalists. Fourth, the roles of HHC nurses and pharmacists are limited in care team collaboration and discussion about post-acute deprescribing. CONCLUSIONS AND IMPLICATIONS: Post-acute deprescribing relies on multiple parties in the care team yet it has challenges. Interventions to align the timing of deprescribing and that of post-acute care visits, prioritize deprescribing and allow clinicians more time to complete related tasks, improve medication education for patients, and ensure effective communication in the care team with synchronized electronic health record systems are needed to advance deprescribing during the transition from hospital to home.


Subject(s)
Deprescriptions , Home Care Services , Humans , Aged , Qualitative Research , Patient Transfer , Subacute Care
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