Seriously Ill Patients’ Prioritized Goals and Their Clinicians’ Perceptions of Those Goals

Modes, Matthew E.; Engelberg, Ruth A.; Nielsen, Elizabeth; Brumback, Lyndia C.; Neville, Thanh; Walling, Anne M.; Curtis, J. Randall; Downey, Lois

doi:10.1016/j.jpainsymman.2022.06.004

Cited by 10 publications

(4 citation statements)

References 56 publications

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“…32 Patients whose prioritized health care goals are understood by their clinicians are likely to be better positioned to receive goal-concordant care, defined as “medical care that aligns with the patients' values, goals, and life priorities. 33 , 34 PC provides this extra layer of support while patients with serious illness receive nonpharmacological and pharmacological therapies throughout their disease course. 12 …”

Section: Discussionmentioning

confidence: 99%

Pulmonologists' Perspectives on and Access to Palliative Care for Patients With Idiopathic Pulmonary Fibrosis in South Carolina

Lindell,

Madisetti,

Fasolino

et al. 2023

Palliative Medicine Reports

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Background: Idiopathic pulmonary fibrosis (IPF) is a serious illness with an unpredictable disease course and survival rates comparable with some cancers. Patients with IPF suffer considerable symptom burden, declining quality of life, and high health care resource utilization. Patients and caregivers report many unmet needs, including a desire for more education regarding diagnosis and assistance with navigating disease trajectory. Compelling evidence suggests that palliative care (PC) provides an extra layer of support for patients with serious illness. Research Question: The purpose of this survey was to gain perspectives regarding PC for patients with IPF by board-certified pulmonologists in South Carolina (SC). Study Design and Methods: A 24-item survey was adapted (with permission) from the Pulmonary Fibrosis Foundation PC Survey instrument. Data were analyzed and results are presented. Results: Pulmonologists ( n = 32, 44%) completed the survey; 97% practice in urbanized settings. The majority agreed that PC and hospice do not provide the same service. There were varying views about comfort in discussing prognosis, disease trajectory, and addressing advance directives. Options for ambulatory and inpatient PC are limited and early PC referral does not occur. None reported initiating a PC referral at time of initial IPF diagnosis. Interpretation: Pulmonologists in SC who participated in this survey are aware of the principles of PC in providing comprehensive care to patients with IPF and have limited options for PC referral. PC educational materials provided early in the diagnosis can help facilitate and guide end-of-life planning and discussions. Minimal resources exist for patients in underserved communities.

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Section: Discussionmentioning

confidence: 99%

Pulmonologists' Perspectives on and Access to Palliative Care for Patients With Idiopathic Pulmonary Fibrosis in South Carolina

Lindell,

Madisetti,

Fasolino

et al. 2023

Palliative Medicine Reports

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“…Entende-se que o médico será o responsável por identificar junto aos pacientes com patologias graves quais tratamentos irão se adequar de maneira mais efetiva aos valores e objetivos do paciente, levando em consideração as circunstâncias que cercam a saúde do indivíduo, sendo de suma importância que o médico compreenda de maneira precisa os objetivos do paciente, para que dessa maneira, o objetivo do paciente seja priorizado (MODES et al, 2022).…”

Section: Discussionunclassified

Uso das terapias integrativas na atenção integral de pacientes sob cuidados paliativos: uma revisão integrativa

De Castro,

Cesar,

De Souza

et al. 2023

PRW

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Objetivo: Identificar as evidências científicas disponíveis sobre o uso das terapias integrativas na atenção integral de pacientes sob cuidados paliativos. Metodologia: Trata-se de uma revisão integrativa, a partir de consulta online às bases de dados: LILACS, BDENF, MEDLINE/PubMed e SciELO. Foram incluídos artigos publicados entre 2013 e 2023, disponíveis nos idiomas português, inglês e espanhol e com disponibilidade na íntegra. Para análise, totalizaram 12 artigos selecionados. Resultados: Entre as práticas integrativas evidenciadas estão a musicoterapia, meditação, yoga e arteterapia com uso de imagens audiovisuais, apresentando alívio dos sintomas, melhora do humor, na qualidade de vida relacionada à saúde, maior satisfação do paciente, redução/melhoria clinicamente significativa nos escores de sofrimento global, bem-estar, fadiga, ansiedade, falta de ar e depressão geral e física significativamente menores. Além de técnicas como Terapia Cognitiva Comportamental, intervenção psicoeducativa e Planejamento Antecipado de Cuidados. Considerações Finais: Ressalta-se a necessidade de maior divulgação dessas práticas entre os profissionais de saúde e comunidade, para que a integralidade possa ser efetivada nos cuidados paliativos.

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“…However, as health systems continue to leverage technology—specifically, patient portals—to improve communication and cancer-related outcomes, 18–20 there is a pressing need to consider patient and clinician perspectives about the use of portals to improve person-centered communication, both to enhance the clinical utility of portal-focused innovations and to balance factors such as treatment benefits and burdens, survival time, and quality of life. 16 …”

Section: Introductionmentioning

confidence: 99%

Patient and Clinician Stakeholder Perspectives on a Patient Portal Questionnaire Eliciting Illness and Treatment Understanding and Core Health-Related Values

Rosa,

Gilliland,

McDarby

et al. 2023

Palliative Medicine Reports

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Introduction: Person-centered communication is foundational to cancer care. In pilot research, a questionnaire eliciting patients' illness and treatment understanding (ITU) and core health-related values (HRV) through the electronic patient portal demonstrated feasibility, acceptability, and efficacy. The aim of this study was to elicit stakeholder feedback to refine the design of the portal-based intervention, remain end-user centered, and optimize future system-wide integration. Methods: Between April and June 2023, we purposively sampled patients and clinicians from a previous pilot study to participate in a 20–30-minute semistructured interview about their opinions of and experiences with the portal questionnaire on ITU and HRV. An interdisciplinary coding team used a two-phase rapid analysis to identify themes, subthemes, and illustrative participant quotations. Results: Fourteen patients (mean age = 68 years) and 12 clinicians participated (total n = 26). Colorectal cancer was the commonest malignancy (64%) among patients. Clinicians were mostly physicians (50%), nurse practitioners (33%), and registered nurses (17%), with two-thirds having >15 years of experience in their specialty. Analysis generated four themes: (1) clinical utility of questionnaire, (2) barriers to questionnaire implementation, (3) considerations and strategies for modifying the questionnaire, and (4) considerations and strategies for questionnaire implementation. Themes captured key information about incorporating this questionnaire into clinical practice. Conclusion: Patients with cancer and their clinicians found a portal-based ITU and HRV questionnaire clinically useful to improve multiple aspects of person-centered communication. Participant recommendations about questionnaire timing and sharing of questionnaire responses with the clinical team will inform future questionnaire implementation and scaling in clinical settings.

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Seriously Ill Patients’ Prioritized Goals and Their Clinicians’ Perceptions of Those Goals

Cited by 10 publications

References 56 publications

Pulmonologists' Perspectives on and Access to Palliative Care for Patients With Idiopathic Pulmonary Fibrosis in South Carolina

Pulmonologists' Perspectives on and Access to Palliative Care for Patients With Idiopathic Pulmonary Fibrosis in South Carolina

Uso das terapias integrativas na atenção integral de pacientes sob cuidados paliativos: uma revisão integrativa

Patient and Clinician Stakeholder Perspectives on a Patient Portal Questionnaire Eliciting Illness and Treatment Understanding and Core Health-Related Values

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