A case report of CFTR modulator administration via carrier mother to treat meconium ileus in a F508del homozygous fetus.

We report elexacaftor-tezacaftor-ivacaftor (ETI) treatment of a F508del carrier who was pregnant with a F508del homozygous fetus. At 23-weeks gestation meconium ileus (MI) was evident on ultrasound including dilated, hyperechoic bowel, which persisted on subsequent imaging. Through shared decision-making, the mother began ETI at 32 weeks with intent to treat fetal MI. The ultrasound findings persisted at treatment day 13, but bowel dilation had resolved by imaging on treatment day 27. A female infant was delivered vaginally at 36 weeks with no complications. The mother continued ETI while breastfeeding. Stool elastase at age 2 weeks was 240 mcg/g. Sweat chloride measurement was 64 and 62 mEq/L. Maternal and infant liver function testing have been normal. Maternal ETI treatment likely led to resolution of the MI and there is evidence supporting continued infant benefit through breastmilk. Logistical and ethical considerations regarding treatment of a carrier mother for infant benefit are discussed.

"Opening eyes to real interprofessional education": results of a national faculty development initiative focused on interprofessional education in oncology palliative care.

The purpose of this study was to evaluate participants' feedback related to their experience in the Interprofessional Education Exchange (iPEX) program, a training initiative for faculty development in interprofessional oncology palliative care education. Participants voluntarily submitted a written reflection using a guide. The research team used qualitative content template analysis techniques to determine codes and categories based on the reflections and selected representative quotations (meaning units) from the data. Fifty-three reflections (100%) submitted by those completing the training were included in the analysis. The most appreciated aspects of the training were the opportunity for exchange of ideas and programs and the time allowed during the workshop for each team to work on developing their unique plan for interprofessional education (IPE) in oncology palliative care at their home institution. The iPEX program proved to be feasible, well-accepted, and valued by participants who reported personal, professional, and team growth and expressed appreciation for program support, content, and the exchange of ideas in a face-to-face setting. The results demonstrate that a faculty development program built on recommendations in the literature contributed to successful efforts to plan and initiate IPE in oncology palliative care.

The Interprofessional Education Exchange: The Impact of a Faculty Development Program in Interprofessional Palliative Oncology Education on Trainee Competencies, Skills, and Satisfaction.

Background: The interprofessional education exchange (iPEX) provides education, training, and mentoring to select interprofessional faculty trainee teams for development and implementation of interprofessional education (IPE) in palliative oncology. Objective: To evaluate the impact of the iPEX project on trainees' self-efficacy in IPE skills and IPE competencies. Design: A pre-/post-test design was used to evaluate trainees' progress. Trainees rated project components and developed IPE curricula in palliative oncology. Setting/Subjects: Sixteen United States-based faculty teams consisting of four to five members representing three or more disciplines completed the one-year faculty development project consisting of webinars, online interactive modules, a face-to-face workshop, mentoring, and assistance. The exchange of ideas, means for overcoming obstacles, collaborative teaching techniques, and curriculum development guidelines were integrated into the program. Measurements: Standardized measures of self-efficacy in IPE skills (Interprofessional Facilitation Skills Checklist) and IPE competencies (Core Competencies for Interprofessional Practice Individual Competency Assessment Tool) were used. Trainees rated the effectiveness of the project components on a scale of 1-5 (1 = not at all effective, 5 = extremely effective) and reported their plan for IPE palliative care curricula at their home institution. Results: Pre and post-paired samples t-test scores (n = 78) on both standardized instruments for IPE skills and competencies were significantly different (p < 0.001). Ratings of project components ranged from 3.97 to 4.90. Each team successfully developed a unique plan for IPE in palliative oncology. Conclusions: Multimodal faculty development and mentoring are successful means for improving self-assessed IPE skills and competencies.

Living with the financial consequences of cancer: A life course perspective.

PURPOSE: Financial hardship can be a major cause of distress among persons with cancer, resulting in chronic stress and impacting physical and emotional health. This paper provides an analysis of the lived experience of cancer patients' financial hardship from diagnosis to post-treatment. METHODS: In-depth interviews were conducted with 26 cancer survivors who reported financial hardship during and/or after treatment. The interviews were analyzed using DedooseTM as an organizational tool, the life course perspective as an organizing theoretical framework, and a thematic analysis tool 1 to answer our research questions. Our analysis identified that timing and sequencing of life transitions and stress proliferation furthered the process of financial stress over time. FINDINGS: Cancer survivors do not experience financial toxicity as a singular process; the experience can be quite different depending on age and life transitions. PRACTICE/POLICY IMPLICATIONS: These findings provide psychosocial oncology providers with a framework for identifying patients at risk for financial distress and addressing the critical needs related to their life stage.

Insights and experiences of chaplain interns and social work interns on palliative care teams.

Interdisciplinary palliative care teams provide critical, comprehensive end-of-life care, although the accumulated literature points toward barriers that impede their effectiveness. The current phenomenological qualitative study presents perceptions of chaplaincy interns (N = 24) and social work interns (N = 23) after a semester-long end-of-life clinical training experience with interdisciplinary palliative care teams. Analysis of the end of semester reflections resulted in seven themes, which are fairly consistent with the literature base. The described experiential learning and reflections in the current study are powerful and can inform how to prepare practitioners for teamwork and compassionate end-of-life care.

Results of a nationwide hospice and palliative care social work job analysis.

The role of the hospice and palliative social worker is often ambiguous and misunderstood by colleagues and fellow team members. One reason for this is the lack of identified, clearly delineated roles, skills, and tasks employed by these specialty social workers in their daily work. This article summarizes the first nationwide job analysis of hospice and palliative social workers. A contextual, cross-sectional survey design was used to identify current and relevant job tasks from practicing hospice and palliative social workers. A sample of 482 social workers representing 46 states responded to a survey that included demographic questions and ranking of 152 tasks and importance to the position. Tasks were categorized into four broad categories: assessment and reevaluation; planning and intervention; death, grief, and bereavement; and professionalism; which includes subcategories consisting of multiple tasks and skills. Respondents identified performing a psychosocial assessment from a patient/family centered care perspective, assessment of the patient's current and desired quality of life and of coping skills as the tasks most important to their role. This outline of the role of the hospice and palliative social worker was then used in the development of an evidence-based certification exam that may be required of those who want to receive specialty certification in the field.

Defining Core Competencies for Generalist-Level Palliative Social Work.

CONTEXT: Care provided to seriously ill patients by frontline social workers is a component of generalist-level palliative care. The core competencies for high-quality generalist-level palliative social work are necessary to promote training curricula and best practices but have not yet been defined in the U.S. OBJECTIVE: The objective of this study was to develop consensus-derived core competencies for generalist-level palliative social work. METHODS: Fifty-five proposed social work competencies were categorized by the eight domains of palliative care identified by the National Consensus Project for Quality Palliative Care. The competencies were rated by 41 regionally dispersed, Master's level social workers selected through purposive and snowball sampling using a Delphi method. Each was rated as essential for generalist-level palliative social work, acceptable with modifications, or rejected based on the judgment that it was not essential for generalist-level palliative social work or was outside the scope of practice. Consensus was defined as >70% agreement to accept or reject a competency. Three review rounds were needed to achieve consensus on all competencies. RESULTS: Two competencies were added to the original list. Of the 57 proposed competencies, 41 were accepted (19 after modification) and 16 were rejected. Competencies in the social, spiritual, cultural, and ethical/legal aspects of care domains were relatively more likely to be accepted compared with those in structure and processes of care, physical care, psychological care, and care of patient at the end of life. CONCLUSION: The 41 consensus-derived competencies for generalist-level palliative social work may inform the development of training curricula and standards for high-quality care.

Which Critical Communication Skills Are Essential for Interdisciplinary End-of-Life Discussions?

Conversations about dying and end-of-life (EOL) care are the most challenging of all communication scenarios. These conversations include discussions about diagnosis and prognosis, treatment goals, and EOL wishes, goals of care, and plans for the future. Research has identified critically important skills involved in holding such conversations, and protocols have been established that can assist those discussing these important issues. Often several discussions and professionals from multiple disciplines are needed to ensure that EOL conversations are effective and comprehensive. In this article, we review what is known about the skills and strategies necessary for meaningful and effective EOL conversations and emphasize the valuable role of interdisciplinary approaches to these discussions. Advanced care planning (ACP), which refers to patient decisions about desired care should the patient lose decisional capacity, is included as a type of EOL discussion in this article.

Medicine as It Should Be: Teaching Team and Teamwork during a Palliative Care Clerkship.

BACKGROUND: Interprofessional Education (IPE) is an important component of medical education. Rotations with palliative care interdisciplinary teams (IDTs) provide an optimal environment for IPE and teaching teamwork skills. OBJECTIVE: Our objective was to assess the learning of senior medical students during a palliative care rotation. DESIGN: A constant comparison method based on grounded theory was used in this qualitative study. SETTING/SUBJECTS: Senior medical students completed a semi-structured reflective writing exercise after a required one-week palliative care clerkship. Sixty randomly selected reflective writings were analyzed. MEASUREMENTS: The reflective writings were analyzed to evaluate the student's experiences. RESULTS: Dominant themes identified were related to teams and teamwork. Eight specific themes were identified: value of IDT for team members; value of IDT for patient/family; importance of each team member; reliance on other team members; roles of team members; how teams work; team communication; and interdisciplinary assessment and care planning. Students described exposure to novel experiences and planned to incorporate newly learned behaviors in their future practice. CONCLUSION: By participating in palliative care IDTs, medical students consistently learned about teamwork within healthcare. Additionally, they learned the importance of such teamwork to patients and the team itself. Rotations with palliative care IDTs have a significant role to play in IPE and preparing medical students to practice on teams.

"Sacred Work": Reflections on the Professional and Personal Impact of an Interdisciplinary Palliative Oncology Clinical Experience by Social Work Learners.

This study explored the impact of an oncology palliative care clinical experience with older adults on social work learners. A three-member research team conducted a qualitative content analysis of reflective writings. 27 Master of Science in Social Work students enrolled in an interprofessional palliative oncology curriculum and completed a reflective writing assignment to summarize the clinical scenario, analyze the patient/family care provided, and describe the impact of the experience. Using a constant comparison approach based on grounded theory, the research team analyzed the reflections to come to consensus related to the overall impact of the experience. Two overarching themes (professional and personal impact) and 11 subthemes (appreciation of interdisciplinary teams, recognition of clinical skills of other disciplines, insight into clinical skills of the social worker, perception of palliative care, embracing palliative care principles, centrality of communication, importance of social support, family as the unit of care, countertransference, conflict between personal values and patient/family values, and emotional reactions) were identified. Experiential learning opportunities for social work learners in interprofessional palliative care build appreciation for and skills in applying palliative care principles including teamwork, symptom control, and advanced care planning along with a commitment to embrace these principles in future practice.

As if the disease was not enough: coping with the financial consequences of cancer.

PURPOSE: The goal of this research was to understand how cancer survivors cope with the financial consequences of their disease. METHODS: Twenty-six cancer survivors who self-identified as having experienced financial hardship related to their disease were interviewed. Transcripts of these interviews were analyzed using constructivist grounded theory approach. An analysis of codes related to coping strategies was conducted, and findings were stratified based on established coping theories (Lazarus and Folkman and Moos and Holahan) previously applied to coping with serious/chronic illnesses. RESULTS: Participants used both person-oriented/emotion-focused and task/problem-focused coping skills to confront the financial consequences of their disease trajectory. Problem-focused skills included dealing with debt, accessing financial assistance, making lifestyle changes, seeking information and education, altering treatment protocols, being proactive, and negotiating insurance. Emotion-focused tasks included using personal strengths, expressing emotion, accessing social support, being determined, and taking care of oneself. Results were further analyzed using Moos and Holahan's framework of coping skills; examples of each of these coping skills were identified in the interview data. CONCLUSIONS: Facing serious financial ramifications due to a cancer diagnosis calls forth coping skills and tasks that can be categorized using coping theories traditionally applied to coping with the illness itself. Cancer patients are often confronted with dual threats: the physical and emotional impact of the illness and the loss of financial security and the lifestyle that they have worked to maintain. Interventions with cancer survivors should include facilitating effective coping with the financial implications of the disease.

Advancing Hospice and Palliative Care Social Work Leadership in Interprofessional Education and Practice.

The importance of interprofessional collaboration in achieving high quality outcomes, improving patient quality of life, and decreasing costs has been growing significantly in health care. Palliative care has been viewed as an exemplary model of interprofessional care delivery, yet best practices in both interprofessional education (IPE) and interprofessional practice (IPP) in the field are still developing. So, too, is the leadership of hospice and palliative care social workers within IPE and IPP. Generating evidence regarding best practices that can prepare social work professionals for collaborative practice is essential. Lessons learned from practice experiences of social workers working in hospice and palliative care can inform educational efforts of all professionals. The emergence of interprofessional education and competencies is a development that is relevant to social work practice in this field. Opportunities for hospice and palliative social workers to demonstrate leadership in IPE and IPP are presented in this article.

Preparing Nursing Students for Interprofessional Practice: The Interdisciplinary Curriculum for Oncology Palliative Care Education.

Interprofessional educational experiences for baccalaureate nursing students are essential to prepare them for interprofessional communication, collaboration, and team work. Nurse educators are ideally positioned to develop and lead such initiatives. The purpose of this article is to describe the development and implementation of an interprofessional education (IPE) project involving students in nursing, medicine, social work, and chaplaincy. The Interdisciplinary Curriculum for Oncology Palliative Care Education project uses team-based palliative oncology education as the framework for teaching students interprofessional practice skills. The need for IPE is apparent, but there are very few comprehensive, successful projects for nurse educators to use as models. This article describes the development of the curriculum by the interprofessional faculty team. Issues encountered by nursing faculty members as they implemented the IPE experience are discussed. Solutions developed to address the issues and ongoing challenges are presented. This project can serve as a model of a successful IPE initiative involving nursing students.

Evaluation of an Interdisciplinary Curriculum Teaching Team-Based Palliative Care Integration in Oncology.

For students of the health care professions to succeed in today's health care environment, they must be prepared to collaborate with other professionals and practice on interdisciplinary teams. As most will care for patients with cancer, they must also understand the principles of palliative care and its integration into oncology. This article reports the success of one university's effort to design and implement an interdisciplinary curriculum teaching team-based palliative care in oncology which was mandatory for medical, nursing, social work, and chaplaincy students. Quantitative evaluation indicated that students made significant improvements related to palliative care knowledge and skills and readiness for interprofessional education. Qualitative feedback revealed that students appreciated the experiential aspects of the curriculum most, especially the opportunity to observe palliative teams at work and practice team-based skills with other learners. While there exist many obstacles to interprofessional education and hands-on learning, the value of such experiences to the learners justifies efforts to initiate and continue similar programs in the health sciences.

A Systematic Review of Telehealth in Palliative Care: Caregiver Outcomes.

OBJECTIVE: Telehealth interventions have proven efficacy in healthcare, but little is known about the results of such interventions in palliative care. We conducted a systematic review to evaluate caregiver outcomes related to palliative telehealth interventions. MATERIALS AND METHODS: We searched multiple databases for articles published between January 2003 and January 2015 related to telehealth in palliative care. Two hundred twenty-one articles were considered; nine of these met study inclusion criteria. Data on study design, population, interventions, methods, outcomes, conclusions, and methodological quality were extracted and evaluated by three investigators. RESULTS: Of the nine studies, five measured caregiver quality of life, three measured caregiver anxiety, and two measured caregiver burden. All the studies measuring caregiver quality of life showed no significant difference after telehealth interventions. The caregiver anxiety score decreased after the intervention in two studies, and one study reported significantly reduced caregiver burden. Although feasibility of or caregiver satisfaction with the telehealth intervention was not the focus of this review, most studies reported such findings. Of the nine studies, the majority were rated as having moderate quality using the Cochrane Collaboration's tool for assessing risk of bias. CONCLUSIONS: This systematic review suggests there is evidence of overall satisfaction in caregivers who undergo a telehealth intervention, but outcomes reported were often not substantial. Methodological flaws and small sample sizes negatively affected study quality. More rigorous research to test and evaluate such palliative interventions is needed.

Impact of a telehealth intervention on quality of life and symptom distress in patients with head and neck cancer.

BACKGROUND: Patients undergoing treatment for head and neck cancer commonly experience signi•cant changes in quality of life (QoL) and levels of symptom distress. It is not known if a telehealth intervention would mitigate these changes. OBJECTIVE: To evaluate the impact of a telehealth intervention on QoL and symptom burden in patients undergoing initial treatment for head and neck cancers. METHODS: A randomized clinical trial comparing the impact on QoL and symptom distress of telehealth intervention and standard care was conducted with 80 patients (45 treatment, 35 control) who had been diagnosed with head or neck cancer and were receiving 1 or more treatment modalities. Treatment group participants responded daily to symptom management algorithms using a simple telehealth messaging device. QoL was evaluated by the Functional Assessment of Cancer Therapy-Head and Neck Scale (FACTHN) and symptom burden by the Memorial Symptom Assessment Scale (MSAS). Control group participants completed assessments while they received routine care. RESULTS: In the posttreatment phase, the telehealth participants had signi•cantly better scores than the controls for physical well-being (20.6 vs 17.0, P = .02) and trial outcome index (59.9 vs. 50.2, P = .04) on the FACT-HN, and total scores on the MSAS (0.9 vs. 1.2, P = .04). LIMITATIONS: The moderate sample size of 80 patients limits the power to measure more subtle impacts of the intervention. CONCLUSIONS: Using telehealth to provide support to patients with head and neck cancer during the acute phase of treatment improved some aspects of posttreatment QoL and symptom burden.

Enhancing collaborative leadership in palliative social work in oncology.

The Institute of Medicine (IOM) Report-Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs-provided recommendations for meeting the palliative care needs of our growing population of older Americans. The IOM report highlights the demand for social work leadership across all aspects of the health care delivery system. Social workers are core interdisciplinary members of the health care team and it is important for them to be well prepared for collaborative leadership roles across health care settings. The ExCEL in Social Work: Excellence in Cancer Education & Leadership education project was created as a direct response to the 2008 IOM Report. This article highlights a sampling of palliative care projects initiated by outstanding oncology social work participants in the ExCEL program. These projects demonstrate the leadership of social workers in palliative care oncology.

The Interdisciplinary Curriculum for Oncology Palliative Care Education (iCOPE): meeting the challenge of interprofessional education.

UNLABELLED: Background: Interprofessional education is necessary to prepare students of the health professions for successful practice in today's health care environment. Because of its expertise in interdisciplinary practice and team-based care, palliative care should be leading the way in creating educational opportunities for students to learn the skills for team practice and provision of quality patient-centered care. Multiple barriers exist that can discourage those desiring to create and implement truly interdisciplinary curriculum. DESIGN: An interdisciplinary faculty team planned and piloted a mandatory interdisciplinary palliative oncology curriculum and responded to formative feedback. SETTING/SUBJECTS: The project took place at a large public metropolitan university. Medical, nursing, and social work students and chaplains completing a clinical pastoral education internship participated in the curriculum. MEASUREMENTS: Formative feedback was received via the consultation of an interdisciplinary group of palliative education experts, focus groups from students, and student evaluations of each learning modality. RESULTS: Multiple barriers were experienced and successfully addressed by the faculty team. Curricular components were redesigned based on formative feedback. Openness to this feedback coupled with flexibility and compromise enabled the faculty team to create an efficient, sustainable, and feasible interdisciplinary palliative oncology curriculum. CONCLUSION: Interdisciplinary palliative education can be successful if faculty teams are willing to confront challenges, accept feedback on multiple levels, and compromise while maintaining focus on desired learner outcomes.