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1.
Support Care Cancer ; 32(3): 184, 2024 Feb 23.
Artigo em Inglês | MEDLINE | ID: mdl-38393418

RESUMO

PURPOSE: This study provides an updated evaluation of the prevalence and severity of acute cancer-related symptoms and quality of life (QOL) concerns among patients treated with emetogenic chemotherapy. METHODS: Patients were recruited to a larger, multi-site observational study prior to starting chemotherapy. Participants completed sociodemographic questionnaires and clinical data were abstracted via medical record review. Symptoms and QOL were assessed 5 days after starting moderately or highly emetogenic chemotherapy. Functional Assessment of Cancer Therapy - General assessed QOL concerns. Patient Reported Outcomes version of the Common Terminology Criteria for Adverse Events evaluated symptoms. Symptoms were considered severe when participants responded "severe" or "very severe." RESULTS: Participants (N = 1174) were on average 58 ± 13 years, mostly female (73%), non-Hispanic (89%), and White (87%). Most participants were diagnosed with breast (38.1%), gynecological (20%), and gastrointestinal (17.1%) cancer. The most common QOL concerns of any severity were fatigue (94%), anhedonia (89%), dissatisfaction with QOL (86%), and sleep disturbance (86%). The most common severe QOL concerns were anhedonia (44%), fatigue (40%), and inability to work (38%). Decreased appetite (74%), pain (71%), and constipation (70%) were the most common symptoms of any severity, as well as most common severe symptoms (13%, 18%, and 18%, respectively). CONCLUSION: Herein, updates are provided in regard to QOL concerns and symptoms reported by patients in the days after chemotherapy and demonstrates that concerns and symptoms have shifted in the last decade.


Assuntos
Neoplasias , Qualidade de Vida , Feminino , Humanos , Masculino , Anedonia , Fadiga/induzido quimicamente , Fadiga/epidemiologia , Neoplasias/complicações , Neoplasias/tratamento farmacológico , Inquéritos e Questionários , Pessoa de Meia-Idade , Idoso
2.
Patient Educ Couns ; 120: 108099, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38086227

RESUMO

OBJECTIVES: Patient-centered communication (PCC) occurs when clinicians respond to patients' needs, preferences, and concerns. While PCC is associated with better health-related quality of life in patients with cancer, patients with ovarian cancer have reported unmet communication needs. We used design thinking to develop an intervention to promote PCC in ovarian cancer care. METHODS: Following the steps of design thinking, we empathized with stakeholders by reviewing the literature, then created stakeholder and journey maps to define the design challenge. To ideate solutions, we developed a challenge map. Finally, we developed wireframe prototypes and tested them with stakeholders. RESULTS: Empathizing revealed that misaligned visit priorities precipitated suboptimal communication. Defining the design challenge and ideating solutions highlighted the need to normalize preference assessments, promote communication self-efficacy, and enhance visit efficiency. The Collaborative Agenda-Setting Intervention (CASI) elicits patients' needs and preferences and delivers communication guidance at the point of care. Stakeholders approved of the prototype. CONCLUSION: Design thinking provided a systematic approach to empathizing with stakeholders, identifying challenges, and innovating solutions. PRACTICE IMPLICATIONS: To our knowledge, the CASI is the first intervention to set the visit agenda and support communication from within the electronic health record. Future research will assess its usability and acceptability.


Assuntos
Neoplasias Ovarianas , Qualidade de Vida , Humanos , Feminino , Neoplasias Ovarianas/terapia , Pacientes , Assistência Centrada no Paciente , Comunicação
3.
Transplant Cell Ther ; 30(3): 268-280, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-37952646

RESUMO

Post-transplantation revaccination uptake of childhood vaccines in adult hematopoietic stem cell transplantation (HSCT) survivors is suboptimal, increasing the risk of infectious morbidity and mortality within this population. We systematically reviewed the literature for factors related to revaccination uptake, as well as the barriers and facilitators that affect successful revaccination. We conducted a scoping review searching PubMed, CINAHL, Embase, and Web of Science in March 2023. Two independent reviewers performed study selection using the complete dual review process. Data were extracted using a standard form. Factors were characterized as demographic, clinical, or social determinants of health that affected revaccination uptake. Barriers and facilitators were categorized using the constructs from the World Health Organization Behavioural and Social Drivers Framework. Our searches yielded 914 sources, from which 15 publications were selected (5 original research and 10 quality improvement initiatives). More than one-half of the reports listed factors associated with poorer uptake, predominately clinical factors, followed by social determinants of health, then demographic factors. Nearly all the reports described barriers to successful revaccination uptake, with most of these falling into the "practical issues" construct. Most of the reports described facilitators, nearly all related to health care system improvements associated with improved revaccination uptake. Although this review provides a good starting point for understanding impediments to successful revaccination after HSCT, this review reveals that we lack sufficient evidence to drive targeted interventions to improve uptake. More research is needed, focusing on survivors' voices to inform our knowledge of barriers and facilitators to complete revaccination after HSCT, exploring behavioral and social drivers within this population, and examining the care delivery models that may complicate vaccine delivery in this population.


Assuntos
Atenção à Saúde , Transplante de Células-Tronco Hematopoéticas , Adulto , Humanos , Imunização Secundária
4.
J Pain Symptom Manage ; 67(1): e58-e69, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-37726027

RESUMO

CONTEXT: Receipt of palliative care (PC) has long been suggested in practice for patients with advanced cancer for improved quality of life, mood, and prolonged survival. However, PC referrals in women with ovarian cancer remain suboptimal. OBJECTIVE: To consolidate existing literature on the multiple factors associated with PC referrals in women with advanced ovarian cancer and to better understand the contextual factors of PC referrals and frame receipt of PC using a socioecological model. METHODS: A search of scientific databases was conducted, including PubMed, Embase, CINAHL Complete, and PsycINFO. Key search terms included "ovarian cancer" and "palliative care," and later refined to include advanced stages of the diagnosis. The reviewed articles included a focus on advanced ovarian cancer and reported demographic, medical/clinical, support, or system-level factors examined in the PC referral process. RESULTS: Thirteen articles focused on the factors directly associated with PC referrals. Factors were categorized into different socioecological levels: tumor-level, intrapersonal, interpersonal, and environmental. Factors included tumor characteristics, age, marital status, medical condition, performance status, psychosocial status, support system, provider, and infrastructure. The patient's medical condition was the major component considered in PC referral and care transition. CONCLUSION: Various factors in the socioecological framework suggest that the decision for PC referral could be multifactorial and influenced by factors beyond the medical condition and status. Future research should aim to understand the impact of various socioecological factors on PC referral and examine PC referral experiences from the patient's perspective.


Assuntos
Neoplasias Ovarianas , Cuidados Paliativos , Humanos , Feminino , Cuidados Paliativos/psicologia , Qualidade de Vida , Encaminhamento e Consulta , Neoplasias Ovarianas/terapia , Transferência de Pacientes
6.
J Music Ther ; 60(2): 131-148, 2023 Jun 03.
Artigo em Inglês | MEDLINE | ID: mdl-36787235

RESUMO

The purpose of this secondary analysis was to explore physiological, psychological, and situational influencing factors that may affect the impact of a mindfulness-music therapy intervention on anxiety severity in young adults receiving cancer treatment. Young adults receiving cancer treatment for ≥ eight weeks were recruited from adult and pediatric oncology outpatient centers at Dana-Farber Cancer Institute. Participants were asked to attend up to four, in-person (offered virtually via Zoom video conference after the onset of the COVID-19 pandemic) 45-min mindfulness-based music therapy sessions over twelve weeks with a board-certified music therapist. Participants completed questionnaires about anxiety, stress, and other cancer treatment-related outcomes before and after participating in the intervention. Changes in anxiety (i.e., PROMIS Anxiety 4a) over time were compared among baseline physiological (e.g., age or sex), psychological (e.g., stress), and situational influencing (i.e., intervention delivery format) factors using Wilcoxon-rank sum tests. Thirty-one of the 37 enrolled participants completed the baseline and post-intervention measures and were eligible for inclusion in the secondary analysis. Results revealed that higher baseline physical functioning (median change = -6.65), anxiety (median change=-5.65), fatigue (median change = -5.6), sleep disturbance (median change = -5.6),female sex (median change = -5.15), or virtual intervention delivery(median change = -4.65) were potential physiological, psychological, or situational influencing factors associated with anxiety improvement following mindfulness-based music therapy. Additional investigation into physiological, psychological, or situational influencing factors associated with anxiety response will help to tailor the design of future mindfulness-music therapy interventions to decrease psychological distress and address the unique psychosocial concerns among young adults receiving cancer treatment. Trial Registration ClinicalTrials.gov Identifier: NCT03709225.


Assuntos
COVID-19 , Atenção Plena , Musicoterapia , Neoplasias , Criança , Humanos , Adulto Jovem , Musicoterapia/métodos , Atenção Plena/métodos , Pandemias , Estresse Psicológico/terapia , Estresse Psicológico/psicologia , COVID-19/terapia , Neoplasias/complicações , Neoplasias/terapia , Neoplasias/psicologia , Ansiedade/terapia , Ansiedade/psicologia
7.
J Adolesc Young Adult Oncol ; 12(4): 569-576, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-36752714

RESUMO

Purpose: To explore adolescent and young adults' (AYAs) experiences with participation in a mindfulness-based music therapy intervention during cancer treatment before and during the COVID-19 pandemic. Methods: Sixteen young adults (20-39 years old) who received cancer treatment and participated in a mindfulness-based music therapy intervention for anxiety and stress were interviewed using a semistructured interview guide. Interviews were audio recorded and transcribed verbatim. The interview guide contained prompts about reasons for joining the study, usual coping strategies, experience with the in-person and virtual delivery formats of the intervention, and suggestions for improvement. Themes were derived from the data using inductive content analysis methods. Results: Findings from the interviews included the following: (1) virtual group participants reported difficulty finding a private place to attend the intervention sessions, (2) participants experienced a sense of relaxation in response to intervention participation, (3) in-person group participants felt a sense of connection to the music and their family members who were present during the intervention, while virtual group participants felt a sense of connection to mindfulness, (4) virtual group participants reported that practicing music and mindfulness together was synergistic, and (5) in-person intervention delivery was preferred to virtual intervention delivery. Conclusion: This study provides insight into the contextual factors that impact satisfaction with the intervention and the effect of the intervention on anxiety and stress. Overall, while virtual mindfulness-based music therapy delivery may be more feasible, there are still important advantages to in-person delivery that should be considered in the design of future mindfulness-based music therapy interventions. ClinicalTrials.gov Identifier: NCT03709225.


Assuntos
COVID-19 , Atenção Plena , Musicoterapia , Música , Adolescente , Adulto , Humanos , Adulto Jovem , Atenção Plena/métodos , Pandemias , Pesquisa Qualitativa
8.
Cancer Nurs ; 46(2): 103-110, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-35283473

RESUMO

BACKGROUND: Quantitative reports suggest that the assessment and management of chemotherapy-induced peripheral neuropathy (CIPN) in practice is suboptimal. OBJECTIVE: The purpose of this qualitative analysis was to explore clinician-related perspectives of CIPN assessment, management, and the use of a CIPN decision support tool. METHODS: Clinicians from the breast oncology, gastrointestinal oncology, or multiple myeloma disease centers at Dana-Farber Cancer Institute who interacted with a CIPN clinician decision support algorithm were eligible to participate in the semi-structured interviews. The interview guide included questions about CIPN assessment, management, and clinician-decision support tool use. All interviews were audio-recorded, transcribed, and analyzed using inductive content analysis. RESULTS: Of the 39 eligible clinicians, 15 agreed to be interviewed. Interviewed clinicians were mainly physicians (73.3) and White, non-Hispanic (93.3%). Main themes from the interviews included (1) CIPN management practice patterns (eg, endorsement of non-recommended management strategies or lack of standardization for chemotherapy dose reduction) and barriers (eg, insurance prior authorizations required for duloxetine prescription), (2) CIPN assessment practice patterns (eg, use of subjective instead of objective CIPN assessment approaches) and barriers (eg, difficult to interpret patients' CIPN report between visits), and (3) utilization of the clinician decision support tool (eg, all assessment tasks lead to same management options). CONCLUSIONS: There are several barriers to clinicians' use of evidence-based CIPN assessment and management strategies. IMPLICATIONS FOR PRACTICE: Future work should be focused on addressing barriers to duloxetine prescription, developing evidence-based CIPN assessment and management strategies, improving symptom monitoring, and facilitating referrals to existing supportive care services.


Assuntos
Antineoplásicos , Mieloma Múltiplo , Doenças do Sistema Nervoso Periférico , Humanos , Antineoplásicos/efeitos adversos , Cloridrato de Duloxetina/efeitos adversos , Doenças do Sistema Nervoso Periférico/induzido quimicamente , Doenças do Sistema Nervoso Periférico/diagnóstico , Doenças do Sistema Nervoso Periférico/terapia , Oncologia
9.
Palliat Support Care ; 21(3): 515-533, 2023 06.
Artigo em Inglês | MEDLINE | ID: mdl-35582975

RESUMO

OBJECTIVE: To systematically review and synthesize the patient-clinician communication experiences of individuals with ovarian cancer. METHODS: The CINAHL, Embase, MEDLINE, PsycINFO, and Web of Science databases were reviewed for articles that described (a) original qualitative or mixed methods research, (b) the experiences of individuals with ovarian cancer, and (c) findings related to patient-clinician communication. Relevant data were extracted from study results sections, then coded for descriptive and analytical themes in accordance with Thomas and Harden's approach to thematic synthesis. Data were coded by two authors and discrepancies were resolved through discussion. RESULTS: Of 1,390 unique articles, 65 met criteria for inclusion. Four descriptive themes captured participants' experiences communicating with clinicians: respecting me, seeing me, supporting me, and advocating for myself. Findings were synthesized into three analytical themes: communication is analogous to caring, communication is essential to personalized care, and communication may mitigate or exacerbate the burden of illness. SIGNIFICANCE OF RESULTS: Patient-clinician communication is a process by which individuals with ovarian cancer may engage in self-advocacy and appraise the extent to which they are seen, respected, and supported by clinicians. Strategies to enhance patient-clinician communication in the ovarian cancer care setting may promote patient perceptions of patient-centered care.


Assuntos
Neoplasias Ovarianas , Feminino , Humanos , Pesquisa Qualitativa , Neoplasias Ovarianas/complicações , Assistência Centrada no Paciente , Comunicação
10.
Palliat Med ; 37(5): 730-739, 2023 05.
Artigo em Inglês | MEDLINE | ID: mdl-36380515

RESUMO

BACKGROUND: Serious illness conversations may lead to care consistent with patients' goals near the end of life. The emergency department could serve as an important time and location for these conversations. AIM: To determine the feasibility of an emergency department-based, brief motivational interview to stimulate serious illness conversations among seriously ill older adults by trained nurses. DESIGN: A pre-/post-intervention study. SETTINGS/PARTICIPANTS: In an urban, tertiary care, academic medical center and a community hospital from January 2021 to January 2022, we prospectively enrolled adults ⩾50 years of age with serious illness and an expected prognosis <1 year. We measured feasibility outcomes using the standardized framework for feasibility studies. In addition, we also collected the validated 4-item Advance Care Planning Engagement Survey (a 5-point Likert scale) at baseline and 4-week follow-up and reviewing the electronic medical record for documentation related to newly completed serious illness conversations. RESULTS: Among 116 eligible patients who were willing and able to participate, 76 enrolled (65% recruitment rate), and 68 completed the follow-up (91% retention rate). Mean patient age was 64.4 years (SD 8.4), 49% were female, and 58% had metastatic cancer. In all, 16 nurses conducted the intervention, and all participants completed the intervention with a median duration of 27 min. Self-reported Advance Care Planning Engagement increased from 2.78 pre to 3.31 post intervention (readiness to "talk to doctors about end-of-life wishes," p < 0.008). Documentation of health care proxy forms increased (62-70%) as did Medical Order for Life Sustaining Treatment (1-11%) during the 6 months after the emergency department visit. CONCLUSION: A novel, emergency department-based, nurse-led brief motivational interview to stimulate serious illness conversations is feasible and may improve advance care planning engagement and documentation in seriously ill older adults.


Assuntos
Planejamento Antecipado de Cuidados , Papel do Profissional de Enfermagem , Humanos , Feminino , Idoso , Pessoa de Meia-Idade , Masculino , Estudos de Viabilidade , Diretivas Antecipadas , Serviço Hospitalar de Emergência
11.
J Cancer Educ ; 38(3): 906-912, 2023 06.
Artigo em Inglês | MEDLINE | ID: mdl-35927535

RESUMO

Little quantitative evidence exists surrounding patients' level of understanding of chemotherapy-induced peripheral neuropathy (CIPN) symptoms (numbness, tingling, pain in the hands/feet) and consequences (e.g., negatively affect physical functioning or chemotherapy dosing) at the beginning of chemotherapy. The purpose of this cross-sectional, secondary analysis was to describe CIPN knowledge and education patterns among adults early in a course of neurotoxic chemotherapy for the treatment of cancer (< three infusions). Following consent, participants completed an electronic questionnaire about their perceptions of CIPN symptoms, incidence, and education. Participants (N = 92) were mainly female (76%), white (91%), and diagnosed with breast (46%) or gastrointestinal (40%) cancers. Most participants without CIPN (n = 48) did not expect to develop CIPN (45%) or were unaware of CIPN as a side-effect (30%). Furthermore, 71% of participants without CIPN (n = 31) estimated CIPN to occur in ≤ 30% of patients receiving neurotoxic chemotherapy. Overall, participants learned about CIPN from their doctor or nurse prior to beginning chemotherapy (90%). Clinicians delivered education about CIPN symptoms (75%), but less frequently delivered education about CIPN management (14%), or the impact of CIPN on the ability to continue chemotherapy (16%) or physical functioning (24%). Finally, participants reported that a discussion with their doctor/nurse would be the best way to learn about CIPN (92%). Results revealed that participants without CIPN were largely unaware of the adverse consequences or incidence of CIPN during treatment. Further research is needed to investigate optimal methods to promote patient-clinician communication about CIPN during chemotherapy to enhance patients' retention of CIPN information and activation in their care.


Assuntos
Antineoplásicos , Neoplasias , Doenças do Sistema Nervoso Periférico , Adulto , Humanos , Feminino , Masculino , Estudos Transversais , Doenças do Sistema Nervoso Periférico/induzido quimicamente , Doenças do Sistema Nervoso Periférico/terapia , Neoplasias/tratamento farmacológico , Dor , Antineoplásicos/efeitos adversos , Qualidade de Vida
12.
Support Care Cancer ; 31(1): 75, 2022 Dec 22.
Artigo em Inglês | MEDLINE | ID: mdl-36544032

RESUMO

PURPOSE: No evidence-based prevention strategies currently exist for cancer-related cognitive decline (CRCD). Although patients are often advised to engage in healthy lifestyle activities (e.g., nutritious diet), little is known about the impact of diet on preventing CRCD. This secondary analysis evaluated the association of pre-treatment diet quality indices on change in self-reported cognition during chemotherapy. METHODS: Study participants (n = 96) completed the Block Brief Food Frequency Questionnaire (FFQ) before receiving their first infusion and the PROMIS cognitive function and cognitive abilities questionnaires before infusion and again 5 days later (i.e., when symptoms were expected to be their worst). Diet quality indices included the Dietary Approaches to Stop Hypertension (DASH), Alternate Mediterranean Diet (aMED), and a low carbohydrate diet index and their components. Descriptive statistics were generated for demographic and clinical variables and diet indices. Residualized change models were computed to examine whether diet was associated with change in cognitive function and cognitive abilities, controlling for age, sex, cancer type, treatment type, depression, and fatigue. RESULTS: Study participants had a mean age of 59 ± 10.8 years and 69% were female. Although total diet index scores did not predict change in cognitive function or cognitive abilities, higher pre-treatment ratio of aMED monounsaturated/saturated fat was associated with less decline in cognitive function and cognitive abilities at 5-day post-infusion (P ≤ .001). CONCLUSIONS: Higher pre-treatment ratio of monounsaturated/saturated fat intake was associated with less CRCD early in chemotherapy. Results suggest greater monounsaturated fat and less saturated fat intake could be protective against CRCD during chemotherapy.


Assuntos
Disfunção Cognitiva , Dieta Mediterrânea , Humanos , Feminino , Pessoa de Meia-Idade , Idoso , Masculino , Dieta , Cognição , Disfunção Cognitiva/induzido quimicamente , Disfunção Cognitiva/prevenção & controle
13.
Support Care Cancer ; 30(12): 9963-9973, 2022 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-36355216

RESUMO

PURPOSE: There are no recommended treatments for chemotherapy-induced peripheral neuropathy (CIPN) prevention. Recruitment to CIPN prevention clinical trials is challenging because it is difficult to enroll patients between the time of cancer diagnosis and the initiation of neurotoxic chemotherapy. The purpose of this exploratory-sequential mixed-methods study was to determine patients' preferences that could affect the choice to participate in CIPN prevention clinical trials. METHODS: First, twenty cognitive interviews were conducted with adults who completed less than three neurotoxic chemotherapy infusions to clarify clinical trial attributes and levels thought to be important to patients when deciding whether to enroll in CIPN prevention trials (i.e., type of treatment, clinical tests, reimbursement, survey delivery; length of visits, timing of follow-up, when to begin treatment). Second, another eighty-eight patients completed an adaptive choice-based conjoint analysis survey that incorporated the finalized attributes and levels. Each level was assigned a part-worth utility score using Hierarchical Bayes Estimation. The relative importance of each attribute was calculated. RESULTS: The attributes with the highest relative importance values were type of treatment (27.1%) and length of study visits (20.2%). The preferred levels included non-medicine treatment (53.49%), beginning treatment after experiencing CIPN (60.47%), email surveys (63.95%), assessments that include surveys and clinical exams (39.53%), under 30-min visits (44.19%), $50/week reimbursement (39.53%), and 1-month post-chemotherapy follow-up visits (32.56%). CONCLUSIONS: Patients' preferences for participation may be included in the design of future CIPN prevention clinical trials to potentially bolster study enrollment.


Assuntos
Antineoplásicos , Doenças do Sistema Nervoso Periférico , Adulto , Humanos , Antineoplásicos/efeitos adversos , Teorema de Bayes , Doenças do Sistema Nervoso Periférico/induzido quimicamente , Doenças do Sistema Nervoso Periférico/prevenção & controle , Inquéritos e Questionários , Preferência do Paciente
14.
Artigo em Inglês | MEDLINE | ID: mdl-36376058

RESUMO

OBJECTIVE: To assess the role of self-efficacy as a mediator of the association between patient-centred communication (PCC) and health-related quality of life (HRQoL) in a sample of participants with ovarian cancer. METHODS: English-speaking adults with ovarian cancer completed a cross-sectional survey. We assessed self-efficacy with the Self-Efficacy for Managing Chronic Disease scale, PCC with the Patient-Centred Communication in Cancer Care-36, and HRQoL with the Functional Assessment of Cancer Therapy-General. We used the PROCESS macro to calculate regression coefficients for the total effect of PCC on HRQoL and direct effect of PCC on HRQoL. We calculated a 95% CI for the indirect effect of PCC on HRQoL using 10 000 bootstrapped samples. RESULTS: The total effect of PCC on HRQoL (9.47, 95% CI 6.21 to 12.74) was greater than the direct effect of PCC on HRQoL (3.47, 95% CI 0.73 to 6.21). The indirect effect of PCC on HRQoL was 6.00 (95% CI 3.56 to 8.95). Self-efficacy explained approximately 63.4% of the association between PCC and HRQoL. CONCLUSIONS: Self-efficacy partially mediated the association between PCC and HRQoL. Self-efficacy is a potential target for communication interventions that aim to improve HRQoL. Research to validate this finding in the setting of a randomised trial is warranted.

15.
Trials ; 23(1): 866, 2022 Oct 09.
Artigo em Inglês | MEDLINE | ID: mdl-36210436

RESUMO

BACKGROUND: Visits to the emergency department (ED) are inflection points in patients' illness trajectories and are an underutilized setting to engage seriously ill patients in conversations about their goals of care. We developed an intervention (ED GOAL) that primes seriously ill patients to discuss their goals of care with their outpatient clinicians after leaving the ED. The aims of this study are (i) to test the impact of ED GOAL administered by trained nurses on self-reported, advance care planning (ACP) engagement after leaving the ED and (ii) to evaluate whether ED GOAL increases self-reported completion of serious illness conversation and other patient-centered outcomes. METHODS: This is a two-armed, parallel-design, single-blinded, randomized controlled trial of 120 seriously ill older adults in two academic and one community EDs in Boston, MA. Participants are English-speaking adults 50 years and older with a serious life-limiting illness with a recent ED visit. Patients with a valid MOLST (medical order for life-sustaining treatment) form or other documented goals of care within the last 3 months are excluded. We enroll the caregivers of patients with cognitive impairment. Patients are assigned to the intervention or control group using block randomization. A blinded research team member will perform outcome assessments. We will assess (i) changes in ACP engagement within 6 months and (ii) qualitative assessments of the effect of ED GOAL. DISCUSSION: In seriously ill older adults arriving in the ED, this randomized controlled trial will test the effects of ED GOAL on patients' self-reported ACP engagement, EMR documentation of new serious illness conversations, and improving patient-centered outcomes. TRIAL REGISTRATION: ClinicalTrials.gov identifier: NCT05209880.


Assuntos
Planejamento Antecipado de Cuidados , Comunicação , Idoso , Cuidadores , Serviço Hospitalar de Emergência , Humanos , Participação do Paciente , Ensaios Clínicos Controlados Aleatórios como Assunto
16.
J Am Med Inform Assoc ; 30(1): 26-37, 2022 12 13.
Artigo em Inglês | MEDLINE | ID: mdl-36173364

RESUMO

OBJECTIVE: Lung transplant (LTx) saves lives in cystic fibrosis (CF). However, many potential candidates express uncertainty about LTx and die before receiving this treatment. CF guidelines recommend LTx education and clinical discussions well before the need for LTx arises, but limited patient resources exist. MATERIALS AND METHODS: We engaged people with CF and CF physicians in human-centered design of "Take On Transplant" (TOT), a web-based education tool to prepare patients for LTx discussions. Across 3 phases, needs assessment, design groups, and iterative user testing of TOT, we refined TOT from wireframe prototypes, to an interactive website, to a fully functional intervention ready for clinical trials. RESULTS: Fifty-five people with CF and 105 physicians identified information needs to prepare for LTx discussions. Design groups (n = 14 participants) then established core requirements: didactic education ("Resource Library"), patient narratives ("CF Stories"), frequently asked questions ("FAQ"), and self-assessment to tailor content ("My CF Stage"). Iterative usability testing (n = 39) optimized the design of CF Stories and prototype layout. We then developed the TOT website and demonstrated feasibility and preliminary efficacy of use through 2-week field testing (n = 9). DISCUSSION: Our human-centered design process provided guidance for educational tools to serve the evolving needs of potential LTx candidates. Our findings support the process of patient deliberation as a foundation for shared decision-making in CF, and inform educational tools that could potentially translate beyond LTx. CONCLUSION: TOT fills a critical gap in preparing people with CF for shared decision-making about LTx and may serve as a model for educational tools for other preference-sensitive decisions.


Assuntos
Fibrose Cística , Transplante de Pulmão , Médicos , Humanos , Fibrose Cística/cirurgia , Educação de Pacientes como Assunto , Tomada de Decisão Compartilhada
17.
Gynecol Oncol ; 167(2): 239-246, 2022 11.
Artigo em Inglês | MEDLINE | ID: mdl-36150917

RESUMO

OBJECTIVE: To determine usability and acceptability of the electronic self-assessment and care (eSAC) web-based, patient reported outcome (PRO) program for people with advanced ovarian cancer. METHODS: Patient participants recruited from a single ambulatory site were prompted by email to answer symptom/quality of life items prior to each clinic visit. Patient participant acceptability was measured with the Acceptability E-Scale Score (AES). Usability was measured among a subset of patient participants using semi-structured interviews. Clinician participant acceptability and usability were measured via survey and semi-structured interviews. Quantitative data were analyzed with descriptive statistics. Qualitative data were analyzed using thematic content analysis. A mixed methods analysis was performed. RESULTS: Of 163 eligible patients approached, 143 (87.7%) provided written consent. Patient participants (n = 71) who created an eSAC report prior to at least 3 clinic visits, rated eSAC as acceptable with a mean AES score of 26.19 ± 3.36 (out of 30). Interview data from patient participants (n = 33) revealed that eSAC was easy to use and important to the clinic visit conversation. Data from clinician surveys (n = 8) and focus groups (n = 3) revealed that the eSAC program was acceptable and useful for clinicians. Qualitative analysis suggested process improvements from patients and clinicians for effectiveness in the advanced ovarian cancer setting. Mixed methods analysis demonstrated no major discrepancies between quantitative and qualitative findings, with the qualitative data broadening understanding of quantitative ratings. CONCLUSION: eSAC was useful and acceptable in this setting. This PRO is a promising strategy for enhancing patient-centered care for people with advanced ovarian cancer.


Assuntos
Neoplasias Ovarianas , Autoavaliação (Psicologia) , Humanos , Feminino , Qualidade de Vida , Medidas de Resultados Relatados pelo Paciente , Grupos Focais , Neoplasias Ovarianas/diagnóstico , Neoplasias Ovarianas/terapia
18.
Gynecol Oncol ; 167(2): 261-268, 2022 11.
Artigo em Inglês | MEDLINE | ID: mdl-36057465

RESUMO

OBJECTIVE: Greater perceived patient-centered communication (PCC) is associated with better health-related quality of life (HRQoL) in patients with ovarian cancer. Quantitative measures of PCC and HRQoL do little to explain this association. We interviewed patients with high and low ratings of PCC to understand how it is associated with HRQoL. METHODS: Explanatory sequential mixed methods study. Participants were English-speaking U.S. adults with ovarian cancer. We assessed PCC with the Patient-Centered Communication - Cancer (PCC-Ca)-36 (possible score range 1-5; higher scores represent greater patient-centeredness), and purposively sampled 14 participants with total scores in the top and bottom quartiles. Participants completed individual, semi-structured interviews about their communication experiences. Guided by the National Cancer Institute Framework for PCC in Cancer Care, we analyzed interview transcripts using directed content analysis. We integrated survey and interview findings in a joint display. RESULTS: Among 176 survey respondents, PCC-Ca-36 total scores ranged from 1.7 to 5.0. Participants with scores in the top quartile (4.8-5.0) perceived clinicians as proactive and attentive to psychosocial concerns. Those with scores in the bottom quartile (1.7-3.5) described not feeling known as an individual and receiving limited support for self-management. CONCLUSIONS: The association between PCC and QoL may be partially explained by differences in perceived support for psychosocial concerns and self-management. PCC may facilitate receipt of proactive, personalized care.


Assuntos
Neoplasias Ovarianas , Qualidade de Vida , Adulto , Humanos , Feminino , Assistência Centrada no Paciente/métodos , Inquéritos e Questionários , Neoplasias Ovarianas/terapia , Comunicação
19.
Comput Inform Nurs ; 40(9): 641-647, 2022 Sep 01.
Artigo em Inglês | MEDLINE | ID: mdl-35930413

RESUMO

With the rise in telehealth due to the COVID-19 pandemic, further research is needed to determine how to optimize virtual delivery of existing integrative oncology interventions for cancer treatment-related symptoms. The purpose of this qualitative analysis was to explore cancer survivors' perspectives of the acceptability and satisfaction of an 8-week, virtual yoga intervention for cancer survivors with chronic chemotherapy-induced peripheral neuropathy pain. Fourteen participants with chronic chemotherapy-induced peripheral neuropathy pain who completed the virtual yoga intervention were interviewed using a semistructured interview guide. Themes were derived from the data using inductive content analysis methods. Main findings from the interviews included the following: (1) participants were willing to try new nonpharmacological treatments for chemotherapy-induced peripheral neuropathy due to the high symptom burden and prior lack of success with medications; (2) participants highly rated the flexibility offered by the virtual format, but desired the social support potentially offered by practicing in-person yoga; and (3) the impact of virtual yoga on chemotherapy-induced peripheral neuropathy severity was unclear. There were several barriers to participants' use of virtual yoga for chronic chemotherapy-induced peripheral neuropathy pain (eg, technology, lack of space/equipment). The results may be used to improve the design and delivery of future trials testing virtual yoga for chronic chemotherapy-induced peripheral neuropathy pain.


Assuntos
Antineoplásicos , COVID-19 , Sobreviventes de Câncer , Dor Crônica , Neoplasias , Doenças do Sistema Nervoso Periférico , Yoga , Antineoplásicos/efeitos adversos , Dor Crônica/tratamento farmacológico , Humanos , Pandemias , Doenças do Sistema Nervoso Periférico/induzido quimicamente , Doenças do Sistema Nervoso Periférico/terapia
20.
J Geriatr Oncol ; 13(8): 1149-1155, 2022 11.
Artigo em Inglês | MEDLINE | ID: mdl-36008271

RESUMO

INTRODUCTION: Previous studies have suggested that frailty among older adults with cancer is associated with a variety of negative outcomes, including greater chemotherapy toxicity and worse survival. However, results often do not include patient-reported outcomes, such as quality of life (QOL). The objective of this study was to evaluate frailty prior to receipt of moderately- or highly-emetogenic chemotherapy and acute changes in QOL in patients at least 65 years of age. It was hypothesized that frail patients would report greater declines in QOL. MATERIALS AND METHODS: Participants completed questionnaires before receiving their first infusion and again five days later. A 59-item deficit accumulation index score was created at baseline using a modified Rockwood frailty index. QOL was assessed using the Functional Assessment of Cancer Therapy-General (FACT-G). The relationship between baseline frailty and QOL was evaluated using a dichotomized deficit accumulation index (frail vs. robust) in repeated measures ANOVA. RESULTS: Study participants (n = 151) had a mean age of 72 (SD = 4.5) and 62% were female. Nearly half (42%) were frail at baseline. Frail participants reported worse QOL at baseline compared to robust participants. Frail patients reported smaller declines in overall and physical (p < 0.0001) and emotional (p = 0.006) QOL from baseline to five days after receiving chemotherapy. At five days, frail participants reported better emotional and physical QOL compared to robust participants. DISCUSSION: Contrary to expectations, frail patients reported smaller declines in QOL compared to robust patients using a deficit accumulation index. These results can be used to help educate frail patients on what to expect during treatment.


Assuntos
Fragilidade , Neoplasias , Humanos , Feminino , Idoso , Masculino , Fragilidade/complicações , Qualidade de Vida/psicologia , Idoso Fragilizado , Avaliação Geriátrica/métodos , Neoplasias/tratamento farmacológico , Neoplasias/complicações
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