Background: Nurses feature prominently in promoting advance care planning (ACP), but only a limited amount of relevant research has been conducted from the nurses' viewpoint, and little is known about the nurses' knowledge of and their willingness to promote ACP in China.
Aims: The aims of this study were to investigate oncology nurses' knowledge of and their willingness to promote ACP, and to explore associated factors.
Methods: A multi-centre study was conducted to investigate 350 nurses in the oncology departments of four university hospitals in southwestern China. Cluster sampling was used in data collection, which involved three categories of questionnaires concerning demographic characteristics, knowledge about ACP and willingness to promote ACP. Chi-squared tests and multiple linear regression were employed in data analysis.
Results: Some 293 valid questionnaires were collected, among which, 60.1% of respondents never received palliative care education, 89.1% never received training about ACP and 72.7% had not even heard of ACP. Nurses with higher position titles ( 2=18.41, p<0.001) and longer working experience ( 2=12.25, p=0.001) were more likely to have received palliative care education; nurses with higher educational background levels ( 2=12.91, p<0.001), higher position titles ( 2=9.77, p=0.003) and longer working experience ( 2=7.92, p=0.006) were more likely to have learned about ACP; nurses with higher position titles had more access to relevant training ( 2=5.10, p=0.03). Furthermore, whether the nurse had ‘heard about ACP’ (B=3.113, p=0.018) and ‘received training about ACP’ (B=3.894, p=0.04) were both associated with their willingness to promote ACP.
Conclusions: The findings of this study indicated that oncology nurses were highly inclined to promote ACP, but limited by their lack of knowledge and understanding of it. Therefore, a systematic and adequate training programme about ACP for nurses is an urgent requirement to effectively enhance the implementation of ACP in China.
Background: Heart failure (HF) impacts 6.2 million American adults. With no cure, therapies aim to prevent progression and manage symptoms. Inclusion of palliative care (PC) helps improve symptoms and quality of life. Heart failure guidelines recommend the inclusion of PC in HF therapy, but referrals are often delayed.
Objective: Introduce PC to patients with HF and examine the impact on PC consults, readmission, mortality, and intensive care unit (ICU) transfers.
Methods: Patients (n = 60) admitted with HF to an academic hospital were asked to view a PC educational module. A number of PC consults, re-admissions, mortality, and transfers to the ICU were compared among participants and those who declined.
Results: Nine patients in the intervention group (n = 30) requested a PC consult ( P = .042) versus 2 in the usual care group (n = 30; P = .302). There was no statistically significant difference in readmissions, mortality, or ICU transfers between groups.
Conclusions: Palliative care education increases the likelihood of PC utilization but in this short-term project was not found to statistically impact mortality, re-admissions, or transfers to higher levels of care.
Les difficultés financières, l’absence de couverture sociale et la pénurie médicale contribuent à ce que, en Ouganda, de nombreux malades et leurs familles soient livrés à eux-mêmes. Pourtant les équipes soignantes et les associations se mobilisent pour diffuser la culture palliative dans le respect des diversités culturelles. Très autonomes dans leur expertise clinique, les infirmières dispensent des soins et vont à la rencontre des patients à domicile.
Nous proposons une réflexion autour de l'accompagnement éducatif de personnes affectées par une maladie grave incurable accueillies en Maison d'accueil spécialisée. Dans l'objectif de problématiser la rencontre entre deux champs professionnels, celui des soins palliatifs et celui du handicap, nous proposons quelques repères nécessaires pour penser et construire la pratique professionnelle dans ce contexte.
Background: Heart failure (HF) afflicts 6.5 million Americans with devastating consequences to patients and their family caregivers. Families are rarely prepared for worsening HF and are not informed about end-of-life and palliative care (EOLPC) conservative comfort options especially during the end stage. West Virginia (WV) has the highest rate of HF deaths in the U.S. where 14% of the population over 65 years have HF. Thus, there is a need to investigate a new family EOLPC intervention (FamPALcare), where nurses coach family-managed advanced HF care at home.
Methods: This study uses a randomized controlled trial (RCT) design stratified by gender to determine any differences in the FamPALcare HF patients and their family caregiver outcomes versus standard care group outcomes (N = 72). Aim 1 is to test the FamPALcare nursing care intervention with patients and family members managing home supportive EOLPC for advanced HF. Aim 2 is to assess implementation of the FamPALcare intervention and research procedures for subsequent clinical trials. Intervention group will receive routine standard care, plus 5-weekly FamPALcare intervention delivered by community-based nurses. The intervention sessions involve coaching patients and family caregivers in advanced HF home care and supporting EOLPC discussions based on patients’ preferences. Data are collected at baseline, 3, and 6 months. Recruitment is from sites affiliated with a large regional hospital in WV and community centers across the state.
Discussion: The outcomes of this clinical trial will result in new knowledge on coaching techniques for EOLPC and approaches to palliative and end-of-life rural home care. The HF population in WV will benefit from a reduction in suffering from the most common advanced HF symptoms, selecting their preferred EOLPC care options, determining their advance directives, and increasing skills and resources for advanced HF home care. The study will provide a long-term collaboration with rural community leaders, and collection of data on the implementation and research procedures for a subsequent large multi-site clinical trial of the FamPALcare intervention. Multidisciplinary students have opportunity to engage in the research process.
Background: Isometric paravertebral muscle training (IPMT) may improve mobility, pain, and quality of life (QOL) in cancer patients with spinal metastases. However, this regimen remains unproven in patients with unstable spinal metastases (USM), a population at high risk for clinical exacerbation with such interventions. Thus, we conducted this exploratory, non-blinded, randomized controlled trial (NCT02847754) to evaluate the safety/feasibility of IPMT and secondarily assess pain, bone density, pathologic fracture rate, and QOL.
Methods: All patients had histologically/radiologically confirmed USM (per Taneichi score) and underwent non-operative management with 5–10 fractions of palliative radiotherapy (RT). Randomization (1:1) groups were IPMT (intervention, INT) or muscle relaxation (control, CON); both lasted 15 min/day and started concurrently with radiotherapy. The primary endpoint was feasibility (completion of training programs three months post-RT). Secondary endpoints were pain response (Visual Analog Scale) and opioid consumption, bone density and pathologic fracture rate, and QOL (European Organization for Research and Treatment of Cancer, EORTC questionnaires).
Results: Sixty patients were randomized and 56 received protocol therapy. Mean survival in both groups was 4.4 months. There were no adverse events with either training regimen. Altogether, =80% of the planned sessions were completed by 55% (n = 16/29) in CON and 67% (n = 18/27) in INT. Regarding the post-radiotherapy home-based training, =80% of planned sessions were completed by 64% (n = 9/14) of the INT cohort. There were no differences in pain scores, opioid consumption, or bone density between arms (p > 0.05 for all). No difference was observed between groups regarding new pathological fractures (INT: n = 1 vs. CON: n = 3) after three months (p = 0.419). There were no QOL differences between arms (all parameters p > 0.05).
Conclusions: IPMT is potentially feasible for high-risk USM patients. Future trials adequately powered for relevant endpoints are thus recommended.
Only 2.3% of patients at a Midwest home healthcare (HH) agency had documented advance directives (ADs), compared with 28% nationally. Of concern, this HH agency lacked standardized procedures for advance care planning (ACP) leading to inadequate staff knowledge regarding end-of-life, avoidable hospital readmissions, and delayed transitions into hospice care. Lack of ADs is directly correlated to higher hospital readmission rates and lower hospice length of stay. The purpose of this initiative was to develop evidence-based procedures using the Respecting Choices ACP model to: 1) educate staff, 2) increase ACP conversations offered and completed among high-risk patients, 3) increase Practitioner Orders for Life-Sustaining Treatment (POLST) rates, 4) reduce 60-day hospital readmissions, and 5) support hospice care admissions. Staff received discipline-specific education on ACP/ADs. The Knowledge-Attitudinal-Experiential Survey on Advance Directives (KAESAD), assessed staff ACP/AD knowledge, confidence, and experiences. Standardized electronic medical record tools were created to track ACP conversations, POLST rates, 60-day hospital readmissions, and hospice admissions. Paired t-test and chi-square analyses compared changes pre- and post implementation. The KAESAD survey was analyzed for 75 staff (100%) and demonstrates improvement in knowledge, confidence, and experiences. Data also demonstrate increases in: ACP offered 6% to 80% (p < .001); ACP conversations completed 4% to 31% (p < .001); POLST rates 26% to 43.6% (p = .059); decreased 60-day hospital readmissions 40% to 20% (p = .025); whereas hospice care admissions was not impacted ranging from 10% to 5.5% (p = .381). Respecting Choices serves as an effective ACP framework to improve ACP conversations, POLST rates, and hospital readmissions.
Advance care planning (ACP) is an increasingly important topic in primary care as more patients with multiple comorbidities and chronic diseases are living longer owing to advances in medical treatment. Family physicians are well positioned to guide ACP discussions given the longitudinal care they provide, yet many physicians, including resident physicians, feel uncomfortable directing these conversations. In this article we will describe ACP and its importance, as well as present a framework that we have developed to guide the ACP process.
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Aim: To assess the number of end-of-life care studies that have used behavioural theories, which theories were used, to what extent main constructs were explored/measured and which behavioural outcomes were examined.
Design: We conducted a systematic review. The protocol was registered on PROSPERO (CRD42016036009).
Data sources: The MEDLINE (PubMed), PsycINFO, EMBASE, Web of Science and CINAHL databases were searched from inception to June 2017. We included studies aimed at understanding or changing end-of-life care behaviours and that explicitly referred to individual behavioural theories.
Results: We screened 2231 records by title and abstract, retrieved 43 full-text articles and included 31 studies – 27 quantitative (of which four (quasi-)randomised controlled trials) and four qualitative – for data extraction. More than half used the Theory of Planned Behaviour (9), the Theory of Reasoned Action (4) or the Transtheoretical Model (8). In 9 of 31 studies, the theory was fully used, and 16 of the 31 studies focussed on behaviours in advance care planning.
Conclusion: In end-of-life care research, the use of behavioural theories is limited. As many behaviours can determine the quality of care, their more extensive use may be warranted if we want to better understand and influence behaviours and improve end-of-life care.
STUDY DESIGN: Retrospective Analysis of a Quality Improvement Program.
PURPOSE: To describe the development, implementation, and outcomes of an inpatient rehabilitation-based Short Stay Family Training (SSFT) program for patients with life-limiting conditions.
BACKGROUND: Patients with terminal illnesses often have functional limitations that prohibit discharge home after hospitalization, but their condition limits their ability to participate in rehabilitation in an inpatient setting.
METHODS AND MEASURES: After a needs assessment, an interdisciplinary team developed an SSFT program to empower patients, caregivers, and family members by giving them the tools to be independent in caring for a patient with a life-limiting condition. Patients qualifying for the program were tracked in terms of acute care physical therapy and occupational therapy discharge recommendations, diagnosis, inpatient rehabilitation unit length of stay (LoS), caregiver involvement, and discharge location. Data were retrospectively analyzed from patients over the first 16 months.
RESULTS: Since program implementation, 30 patients and their family members participated in the program. Overall, these patients experienced decreased LoS, increased discharge to home, and increased palliative care involvement in the plan of care.
CONCLUSION: Short Stay Family Training is a viable alternative to traditional inpatient rehabilitation to allow patients with life-limiting conditions to discharge home safely with caregiver support.
Background: In Canada, there is a growing need to develop community-based, culturally appropriate palliative care for Indigenous people living in First Nations communities. The public health approach to palliative care, which emphasizes community-based initiatives, is especially relevant in First Nations communities because care is grounded in their distinct social and cultural context. Central to the public health approach are educational strategies that strengthen communities' capacity to care for their vulnerable members as they die. This paper presents community-based research conducted with First Nations communities in Canada that aimed to assess and address local palliative care educational needs to improve community capacity in palliative care.
Methods: Participatory action research (PAR) was conducted with four First Nations communities in Canada over a six-year period (2010-2016). The research occurred in three phases. Phase 1: focus groups, interviews and surveys were employed to assess community specific needs and resources. Phase 2: recommendations were developed to guide the PAR process. Phase 3: educational resources were created to address the identified educational needs. These resources were implemented incrementally over 4 years. Ongoing process evaluation was employed, and revisions were made as required.
Results: Educational needs were identified for patients, families, community members and internal and external health care providers. A wide and comprehensive range of educational resources were created to address those needs. Those culturally appropriate educational resources are available in a very accessible and useable workbook format and are available for use by other Indigenous people and communities.
Conclusions: This research provides an example of the public health approach and offers implementation strategies around palliative care education. This paper contributes to the international literature on the public health approach to palliative care by presenting a case study from Canada that includes: conducting a culturally appropriate assessment of educational needs, creating recommendations, facilitating development and implementation of educational resources in the community to improve community capacity in palliative care.
In spite of a referral letter as an important document for communicating between physicians, whether it could also be useful as a source of information for patients has not yet established. We included cancer patients in palliative care setting, all of whom completed a standardized questionnaire regarding their opinion concerning the utility of a referral letter as a source of information and its requirements to achieve a better understanding. Completed questionnaires were received from 50 cancer patients. Ninety-four percent of participants agreed that a referral letter could be of great importance for procuring medical information to them. There was only minor divergence among the participants respecting age, gender, or education. Particular requirements were diagnosis, treatment plan, prognosis, list of drugs, and contact data of involved physicians. Additional important topics were laboratory values, alternatives to current therapy, side effects and supportive therapy, and advices regarding lifestyle and naturopathy. The majority of patients also concluded to accept technical terms in doctor's letters if a glossary supported their comprehension. The majority of patients prefer a concise description of medical information in a referral letter. This form of a letter would boost patients' involvement and help them transfer medical information to other therapists or relatives.
CONTEXT: Low utilization of palliative care services warrant the development and testing of new solutions to educate and engage patients around the benefits of palliative care.
OBJECTIVES: We sought out to develop and test a novel, mobile health solution to prepare patients for an upcoming outpatient palliative care appointment.
METHODS: After developing a web-based tool called PCforMe (Palliative Care for Me), we conducted a randomized, active-controlled, trial of PCforMe. The primary outcome was the score on the System Usability Scale (SUS). Secondary outcomes were patient self-efficacy (measured by PEPPI) and change in knowledge (measured by a questionnaire). We compared PCforMe to three common online resources for patients seeking information about specialty palliative care.
RESULTS: 80 patients were randomized. There were no significant demographic differences. Mean SUS score for PCforMe was 78.2, significantly above the normative average SUS score of 68 (p-value<0.0001). Mean change in PEPPI score was -2.2 for PCforMe vs -1.7 for control group (p-value=0.72). Preparedness for an upcoming palliative care visit increased 50% in the intervention group versus 13.3% in the control group. Difference in the number of patients with improved knowledge regarding palliative care approached significance (p=0.06). Lastly, we found the no-show rate lower during Q1 2017 (during trial) versus Q1 2016 (before trial), at 11.7% versus 21% (p<0.05). Comparing the full calendar year 2016 versus 2017, we did not find a statistical difference (CY 2016 of 18.8% versus 15% in CY 2017; p=0.22).
CONCLUSION: PCforMe is a usable mobile health tool to educate and prepare patients for an upcoming palliative care appointment. Further research is needed to test effectiveness.
Pain is one of the most feared symptoms experienced by patients at the end of life and one of the most difficult to manage. Families identify patient comfort as a priority in hospice, yet many have concerns regarding pain management and medication side effects. Timely, open, and ongoing communication with hospice teams can assuage concerns to improve care and outcomes relevant to pain medication use in hospice. A pilot project was undertaken to improve the patient and family/caregiver experience in end-of-life care relevant to communication regarding pain medication side effects and management within an inpatient hospice. A 5% improvement in the Consumer Assessment of Healthcare Providers & Services (CAHPS) Hospice quality indicator 18 (Understanding Side Effects) was sought. An evidence-based, interprofessional educational protocol and tool were designed and implemented to guide pertinent conversations. A 6.6% increase in favorable responses to the CAHPS Hospice target indicator occurred over the course of the pilot. Feedback from staff revealed positive responses to the tool with recommended expansion of use across hospice settings. Educational programming holds promise to support communication with hospice patients and families regarding pain medication side effects and management to improve experiential care quality as reflected in CAHPS Hospice surveys.
Objectif: L’article documente le vécu et les représentations sous-jacentes aux soins cliniques pour comprendre le suivi des protocoles ainsi que l’adaptation des soignés et leurs familles.
Matériel et méthodes: Quatre études de cas et 12 entretiens avec les soignants dont huit entretiens avec le personnel au niveau clinique et quatre entretiens avec des acteurs de soins en dehors de la biomédecine ont été menés. Pour l’intelligibilité de notre propos, l’approche constructiviste s’est avérée la mieux appropriée.
Résultats: Au début de toute maladie les familles s’en font une représentation au travers des modèles explicatifs de leurs sociocultures et leurs propres expériences qui oscillent sur des pôles naturaliste et spiritualiste. Par conséquent, le recours à plusieurs avis médicaux est l’attitude qui s’en dégage. Au Cameroun, l’éducation thérapeutique des patients qui permet de socialiser les soignés et leurs familles aux situations cliniques est davantage un échange informatif dépendant des dimensions affectives, cognitives ou conatives de la relation soignant/soigné. Elle ne devient efficiente qu’au moment où l’éducation culturelle du thérapeute lui permet de desceller les non-dits et les médiateurs de cette relation, afin d’établir des échanges négociés, partagés et mutuellement compris.
Conclusion: La maîtrise et le suivi assidu des protocoles thérapeutiques dans les soins palliatifs pédiatriques en Afrique subsaharienne interpellent le rôle du médecin qui sans être un spécialiste des cultures, se doit de ne pas faire fi des médecines parallèles qui sont à la portée de leurs patients et leurs familles et de collaborer avec eux dans les prises de décisions liées à leurs orientations thérapeutiques.
In an effort to improve participation of younger breast cancer survivors in end of life (EOL) discussions and planning, this study evaluated the impact of The Shady Pink Elephant EOL educational series on participants' knowledge, attitudes and behaviors towards palliative care and EOL wishes. Data was gathered at baseline (pre survey and registration) following each event (post survey) and 6 months after the series as intervention (post survey). A total of 36 women with breast cancer, averaging 40 years of age, participated in the first online event, 24 in the second and 22 in the third. A total of 20 completed the 6-month post survey. Significant improvement in scores occurred from baseline to 6 months for the following items: belief that palliative care is only for those at the EOL, belief that EOL discussions are only important for those at the EOL, comfort with talking about EOL issues, confidence that EOL wishes will be honored by one's health care power of attorney and knowledge of characteristics are important in the person assigned as a person's health care power of attorney. The Shady Pink Elephant EOL educational series is therefore a promising intervention for improving EOL knowledge, attitudes and behavior. Further research with larger sample sizes is needed regarding understanding and accessing palliative care and deciding upon and communicating EOL wishes in this patient population.
BACKGROUND: Advance care planning for end-of-life care emerged in the mid-1970's to address the need for tools, such as the advance directive (AD) legal document, to guide medical decision-making among seriously ill patients, their families, and healthcare providers.
OBJECTIVE: Study aims examine providers' perspectives on AD education that involve examining (1) a range of attitudes about educating patients, (2) whether prior knowledge was associated with practice behaviors in educating patients, and (3) specific factors among healthcare providers such as characteristics of work setting, knowledge, attitudes, and behaviors that may influence AD education and documentation.
DESIGN: To examine providers' views, we conducted a cross-sectional, online survey questionnaire of healthcare providers using social media outreach methods for recruitment.
METHODS: This study used a cross-sectional survey design to examine the proposed aims. Healthcare providers, recruited through a broad approach using snowball methods, were invited to participate in an online survey. Logistic regression analyses were used to examine providers' views toward AD education.
RESULTS: Of 520 participants, findings indicate that most healthcare providers said that they were knowledgeable about AD education. They also viewed providing education as beneficial to their practice. These findings suggest that having a positive attitude toward AD education and experiencing less organizational barriers indicate a higher likelihood that providers will educate patients regarding ADs.
CONCLUSION: Various disciplines are represented in this study, which indicates that attitudes and knowledge influence AD discussions. The importance of AD discussions initiated by healthcare providers is critical to providing optimal patient-centered care.
BACKGROUND: Determining intervention efficacy depends as much on the control group as on the intervention, but little attention has been given to the control condition in psychoeducational trials in palliative care.
OBJECTIVES: To examine (1) research practice regarding control conditions that are neither usual care nor no-treatment controls in randomized trials of psychoeducational palliative care interventions and (2) the rationale and completeness of the descriptions of control conditions in trial reports.
METHODS: PubMed, EMBASE, PsycINFO, and Web of Science were searched. After screening 1603 articles, 70 full-text articles were assessed for eligibility. The final sample included 9 trial reports. We used the Delphi list for quality assessment and the modified intervention taxonomy checklist to assess active intervention and control conditions.
RESULTS: Four trials used an attention control designed to be equivalent to the structure of the active intervention. In another 4, the control condition included some aspects of attention control such that the mode of contact was similar to that in the active intervention, but either the amount or the intensity of attention was not similar. Only 3 trial reports explicitly stated the rationale for the choice of control condition. Although most reports contained delivery mode, materials, duration, frequency, and sequence, none described the qualifications or training required to deliver the control condition. Only 1 report mentioned the fidelity monitoring method, and none included fidelity data.
CONCLUSION: Our review of psychoeducational trials in palliative care calls for researchers' attention to appropriate selection, design, conduct and report of control conditions.
BACKGROUND: Advance care planning (ACP) conversations help individuals exercise autonomy and make informed decisions about their care. There are many ACP resources available to support the process of advance care planning, yet available resources not universally accepted and under-utilized in clinical practice.
OBJECTIVE: This study aims to systematically evaluate commonly available general ACP patient educational resources using a comprehensive approach to assess elements ranging from resource inclusion to health literacy.
DESIGN: Systematic evaluation of general ACP educational resources METHODS: ACP educational resources were systematically identified and evaluated for: Patient Education Materials Assessment Tool (PEMAT) score, Flesch-Kincaid reading ease and grade level, cost, languages available, and categories of content including Advance directive/Healthcare proxy, Physician Order for Life-Sustaining Treatment (POLST), Living will, values, preferences, and goals.
RESULTS: Educational resources (n = 20) were identified. These resources were classified as information resources, workbooks, interactive websites, or and activities/conversation guides. The average PEMAT understandability score was 86 (range 58–100) and the average actionability was 90 (range 40–100). Two resources met Flesch–Kincaid reading ease and grade level. Eight were available in English only, nine in two languages, and three in more than two languages. Three explicitly discussed completion of POLST forms. The majority of the resources adequately addressed the content of advanced directives and health care proxy, values, goals, and preferences for future care. The level of time commitment required to use each resource also varied considerably.
CONCLUSION: We present a comprehensive evaluation of resources to support ACP. Using the Transtheoretical Model, we provide a guide for the use of these educational resources based on patient readiness. This review allows clinicians to identify aspects of each resource that may be helpful in preparing older adults for future healthcare decsions. Our analysis has identified the need to continue to refine these educational resources so that they can reach a broad population with varying needs. Advance care planning (ACP) conversations help individuals exercise autonomy and make informed decisions about their care. There are many ACP educational resources available to support the process of advance care planning, yet available resources are not universally accepted and under-utilized in clinical practice. We present a comprehensive evaluation of 20 educational resources to support ACP. Educational resources were identified and evaluated for: Patient Education Materials Assessment Tool (PEMAT) score, Flesch-Kincaid reading ease and grade level, cost, languages available, and categories of content. Using the Transtheoretical Model, we provide a guide for the use of these educational resources based on patient readiness. This review allows clinicians to identify aspects of each resource that may be helpful in preparing older adults for future healthcare decisions. Our analysis has identified the need to continue to refine these educational resources so that they can reach a broad population with varying needs.
BACKGROUND: Individuals with cystic fibrosis (CF) face the challenges of managing a chronic, progressive disease. While palliative care is a standard of care in serious illnesses, there are no guidelines for its incorporation into CF care. Patients with CF, caregivers, and CF care providers may lack knowledge about palliative care and perceive barriers to integrated care.
OBJECTIVES: To: 1) explore knowledge and perceptions of palliative care among patients with CF, caregivers, and CF care providers; 2) solicit opinions about incorporating palliative care into routine CF care; and 3) solicit recommendations for CF-specific palliative care education for patients and caregivers.
METHODS: We conducted semi-structured interviews with adult patients with CF, parents of adolescents with CF, and CF care providers to assess knowledge and perceptions of palliative care. Discussion included suggestions for palliative care education and integration into CF care. The sample was characterized using summary statistics. Key themes were identified using qualitative content analysis.
RESULTS: Ten patients with CF, ten parents, and eight CF care providers participated. Many had minimal knowledge of palliative care and endorsed the association with end of life as a barrier to palliative care, but after learning more about palliative care, thought it could be helpful, and should be introduced earlier.
CONCLUSIONS: In this single center study, many patients with CF, caregivers, and providers lacked knowledge about palliative care. These findings warrant replication in a larger, multisite study to inform palliative care educational interventions as a step toward consistent integration of palliative care into routine CF care.