Publications by authors named "Joanne Wolfe"

167 Publications

"We're performing improvisational jazz": Interprofessional pediatric palliative care fellowship prepares trainees for team-based collaborative practice.

Authors:
Shih-Ning Liaw Amy Sullivan Jennifer Snaman Marsha Joselow Janet Duncan Joanne Wolfe

J Pain Symptom Manage 2021 Feb 15. Epub 2021 Feb 15.

Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA, USA; Department of Pediatrics, Boston Children's Hospital, Boston, MA, USA; Department of Pediatrics, Harvard Medical School, Boston, MA, USA.

Context: Interprofessional education (IPE) prepares clinicians for collaborative practice, yet little is known about the effectiveness of postgraduate IPE.

Objectives: This is the first study to describe educational outcomes of an interprofessional fellowship in pediatric palliative care. Objectives were to understand the experiences of postgraduate trainees in an interprofessional, clinical environment and to evaluate program effect on interprofessional competencies.

Methods: In this mixed-methodology study, we surveyed former fellows from 2002 to 2018 about their fellowship experience and perceived change in interprofessional skills. We performed qualitative semantic content analysis of fellows' responses about learning in an interprofessional context. We compared fellows' self-rated ability (5-point Likert scale), before and after fellowship, in 10 interprofessional competencies selected from the Interprofessional Education Collaborative's core competencies.

Results: Response rate was 87% (41/47). 51% of respondents were physicians, 29% were social workers, and 20% were nurse practitioners. Respondents reported significant improvement in all 10 competencies, with summed mean scores of 2.8±0.6 pre-fellowship ("not very well prepared") and 4.4±0.4 post-fellowship ("very well" to "extremely well prepared") (t =15.6, p<.0001). Effect size for each competency was greater than 1.9 (strong positive impact). The fellowship experience was characterized by dynamic educational relationships: peer relationships with interprofessional co-fellows, mentoring relationships with faculty, clinical relationships with patients and families, and collaborative relationships with the healthcare system. Benefits and challenges of IPE were associated with interprofessional roles, teamwork, patient care, and educational needs.

Conclusion: This study demonstrates the feasibility and effectiveness of an interprofessional postgraduate fellowship in preparing clinicians for collaborative practice.
View Article and Find Full Text PDF

Download full-text PDF

 Source
http://dx.doi.org/10.1016/j.jpainsymman.2021.02.014DOI Listing
February 2021

Palliative Care Referrals in Cardiac Disease.

Authors:
Katie M Moynihan Catherine S Heith Jennifer M Snaman Melissa Smith-Parrish Anna Bakas Shirley Ge Amanda Vidotto Cerqueira Valerie Bailey Dorothy Beke Joanne Wolfe Emily Morell Kimberlee Gauvreau Elizabeth D Blume

Pediatrics 2021 Mar 12;147(3). Epub 2021 Feb 12.

Departments of Cardiology and.

Objectives: With evidence of benefits of pediatric palliative care (PPC) integration, we sought to characterize subspecialty PPC referral patterns and end of life (EOL) care in pediatric advanced heart disease (AHD).

Methods: In this retrospective cohort study, we compared inpatient pediatric (<21 years) deaths due to AHD in 2 separate 3-year epochs: 2007-2009 (early) and 2015-2018 (late). Demographics, disease burden, medical interventions, mode of death, and hospital charges were evaluated for temporal changes and PPC influence.

Results: Of 3409 early-epoch admissions, there were 110 deaths; the late epoch had 99 deaths in 4032 admissions. In the early epoch, 45 patients (1.3% admissions, 17% deaths) were referred for PPC, compared with 146 late-epoch patients (3.6% admissions, 58% deaths). Most deaths (186 [89%]) occurred in the cardiac ICU after discontinuation of life-sustaining therapy (138 [66%]). Medical therapies included ventilation (189 [90%]), inotropes (184 [88%]), cardiopulmonary resuscitation (68 [33%]), or mechanical circulatory support (67 [32%]), with no temporal difference observed. PPC involvement was associated with decreased mechanical circulatory support, ventilation, inotropes, or cardiopulmonary resuscitation at EOL, and children were more likely to be awake and be receiving enteral feeds. PPC involvement increased advance care planning, with lower hospital charges on day of death and 7 days before (respective differences $5058 [ = .02] and $25 634 [ = .02]).

Conclusions: Pediatric AHD deaths are associated with high medical intensity; however, children with PPC consultation experienced substantially less invasive interventions at EOL. Further study is warranted to explore these findings and how palliative care principles can be better integrated into care.
View Article and Find Full Text PDF

Download full-text PDF

 Source
http://dx.doi.org/10.1542/peds.2020-018580DOI Listing
March 2021

A Stakeholder-Driven Qualitative Study to Define High Quality End-of-Life Care for Children with Cancer.

Authors:
Prasanna Ananth Sophia Mun Noora Reffat Randall Li Tannaz Sedghi Madeline Bilodeau Jennifer Snaman Cary P Gross Xiaomei Ma Joanne Wolfe

J Pain Symptom Manage 2021 Feb 5. Epub 2021 Feb 5.

Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Department of Pediatrics, Boston Children's Hospital; Harvard Medical School, Boston, MA.

Context: Among adults with cancer, measures for high quality end-of-life care (EOLC) include avoidance of hospitalizations near end of life. For children with cancer, no measures exist to evaluate or improve EOLC, and adult quality measures may not apply.

Objective: We engaged key stakeholders to explore EOLC priorities for children with cancer and their families, and to examine relevance of existing adult EOLC quality measures for children with cancer.

Methods: In a multi-center qualitative study, we conducted interviews and focus groups with: adolescents and young adults (AYAs) with advanced cancer, parents of children with advanced cancer, bereaved parents, and interdisciplinary healthcare professionals. We transcribed, coded, and employed thematic analysis to summarize findings.

Results: We enrolled 54 stakeholders [25 parents (including 12 bereaved parents), 10 AYAs, and 19 healthcare professionals]. Participants uniformly prioritized direct communication with children about preferences and prognosis, interdisciplinary care, symptom management, and honoring family preference for location of death. Many participants valued access to the emergency department or hospital for symptom management or supportive care, which diverges from measures for high quality EOLC in adults. Most wished to avoid mechanical ventilation and cardiopulmonary resuscitation. Notably, participants generally valued hospice; however, few understood hospice care or had utilized its services.

Conclusion: Childhood cancer stakeholders define high quality EOLC primarily through person-centered measures, characterizing half of existing adult-focused measures as limited in relevance to children. Future research should focus on developing techniques for person-centered quality measurement to capture attributes of greatest importance to children with cancer and their families.
View Article and Find Full Text PDF

Download full-text PDF

 Source
http://dx.doi.org/10.1016/j.jpainsymman.2021.01.134DOI Listing
February 2021

Prioritization of Pediatric Palliative Care Field-Advancement Activities in the United States: Results of a National Survey.

Authors:
Chris Feudtner Jennifer A Faerber Abby R Rosenberg Kathie Kobler Justin N Baker Brynn A Bowman Joanne Wolfe Sarah Friebert

J Pain Symptom Manage 2021 Jan 22. Epub 2021 Jan 22.

Division of Pediatric Palliative Care and Rebecca D. Considine Research Institute, Akron Children's Hospital, Akron, OH, USA; Department of Pediatrics, Northeast Ohio Medical University, Rootstown, OH, USA.

Background: The field of pediatric palliative care (PPC) continues to encounter challenges and opportunities to improving access to high-quality PPC services. In early 2019, a workshop identified 11 potential "next step" actions, and subsequently a national survey-based poll of members of the PPC community was conducted to prioritize these potential actions in terms of their "actionable importance."

Methods: Invitations to the survey were distributed in October 2019 to interdisciplinary PPC health care professionals via email to two major listservs, one hosted by the Section of Hospice and Palliative Medicine of the American Academy of Pediatrics, the other by the Center to Advance Palliative Care. Respondents rated the "actionable importance" of items relative to each other via a discrete choice experiment. Median importance scores are reported for each item.

Results: One hundred seventy-seven individuals responded to the survey. The majority (62.2%) were physicians, with nurses (16.4%), advanced practice nurses (7.9%), and social workers (7.3%) being the other most common responders. The top five potential actions, in descending rank order, were: Determine what parents value regarding PPC (median score of 17.8, out of a total score of all items of 100); Define and disseminate core primary PPC curriculum (median, 15.3); Develop PPC national representation strategy and tactics (median, 12.3); Create PPC-specific program development toolkit (median, 10.9); and, Analyze payment and financing ratios (median, 9.6).

Conclusions: Those seeking to advance the field of PPC should take into account the findings from this study, which suggest that certain actions are more likely to have a beneficial impact on moving the field forward.
View Article and Find Full Text PDF

Download full-text PDF

 Source
http://dx.doi.org/10.1016/j.jpainsymman.2021.01.007DOI Listing
January 2021

Feasibility and acceptability of the "Day 100 Talk": An interdisciplinary communication intervention during the first six months of childhood cancer treatment.

Authors:
Angela M Feraco Sarah R McCarthy Anna C Revette Sarah E Stevens P Jeet Das Hasan Al-Sayegh Clement Ma James A Tulsky Joanne Wolfe

Cancer 2020 Dec 15. Epub 2020 Dec 15.

Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts.

Background: Communication gaps arise early in the childhood cancer trajectory and may persist. The authors conducted a pilot study of the feasibility and acceptability of a communication intervention, the Day 100 Talk (D100). D100 involves an interprofessional family conference during initial months of treatment between oncologists, psychosocial clinicians, and parents, facilitated by a 3-part conversation tool.

Methods: The authors enrolled English-speaking parents of children with nonrelapsed, nonprogressive cancer who were receiving continuity care from enrolled pediatric oncologists and psychosocial clinicians at a single site. The a priori feasibility threshold was 60% parent completion of the D100 intervention. Surveys from parents and professionals and debrief interviews with professionals assessed D100 acceptability.

Results: Thirty-seven parents (77%) and 38 oncology professionals (67%) enrolled. Twenty of 33 evaluable parents (61%) participated in a D100 family conference. Most commonly, parents did not complete the D100 intervention because of scheduling difficulties related to clinical team constraints. All 17 parents who completed a post-D100 survey agreed or strongly agreed that D100 participation was helpful. In debrief interviews, professionals identified D100 benefits, namely, stepping back to the big picture and getting on the same page, and barriers related to logistical challenges and professionals' anticipatory dread.

Conclusions: The D100 intervention pilot demonstrates high acceptability among parents of children with cancer. Despite meeting the prespecified feasibility threshold, findings highlight important barriers to D100 dissemination, namely, perceived burdens on professionals. Potential strategies to reduce burden may include using virtual visit platforms, incorporating D100 elements across multiple visits, or prioritizing intervention delivery to parents with the greatest need for enhanced communication.
View Article and Find Full Text PDF

Download full-text PDF

 Source
http://dx.doi.org/10.1002/cncr.33362DOI Listing
December 2020

Development and validation of a novel informational booklet for pediatric long-term ventilation decision support.

Authors:
Jeffrey D Edwards Howard B Panitch Maureen George Anne-Marie Cirrilla Eli Grunstein Joanne Wolfe Judith E Nelson Rachel L Miller

Pediatr Pulmonol 2020 Dec 11. Epub 2020 Dec 11.

Division of Clinical Immunology, Department of Medicine, Icahn School of Medicine at Mount Sinai, New York, New York, USA.

Objectives: To provide accessible, uniform, comprehensive, and balanced information to families deciding whether to initiate long-term ventilation (LTV) for their child, we sought to develop and validate a novel informational resource.

Methods: The Ottawa Decision Support Framework was followed. Previous interviews with 44 lay and 15 professional stakeholders and published literature provided content for a booklet. Iterative versions were cognitive tested with six parents facing decisions and five pediatric intensivists. Ten parents facing decisions evaluated the booklet using the Preparation for Decision Making Scale and reported their decisional conflict, which was juxtaposed to the conflict of 21 parents who did not read it, using the Decisional Conflict Scale. Twelve home ventilation program directors evaluated the booklet's clinical sensibility and sensitivity, using a self-designed six-item questionnaire. Data presented using summary statistics.

Results: The illustrated booklet (6th-grade reading level) has nine topical sections on chronic respiratory failure and invasive and noninvasive LTV, including the option to forgo LTV. Ten parents who read the booklet rated it as helping "Quite a bit" or more on all items of the Preparation for Decision Making Scale and had seemingly less decisional conflict than 21 parents who did not. Twelve directors rated it highly for clinical sensibility and sensitivity.

Conclusions: The LTV booklet was rigorously developed and favorably evaluated. It offers a resource to improve patient/family knowledge, supplement shared decision-making, and reduce decisional conflict around LTV decisions. Future studies should validate it in other settings and further study its effectiveness.
View Article and Find Full Text PDF

Download full-text PDF

 Source
http://dx.doi.org/10.1002/ppul.25221DOI Listing
December 2020

Weighing Distress and Benefit: Understanding the Research Participation Experiences of Bereaved Parents of Children With Complex Chronic Conditions.

Authors:
Rachel S Deming Joanne Wolfe Danielle D DeCourcey

J Pain Symptom Manage 2020 Dec 4. Epub 2020 Dec 4.

Department of Pediatrics, Boston Children's Hospital, Boston, Massachusetts, USA; Division of Medical Critical Care, Department of Pediatrics, Boston Children's Hospital, Boston, Massachusetts, USA.

Context: Improving end-of-life care for children with complex chronic conditions (CCCs) requires parental perspectives. The vulnerability of bereaved parents has historically been a research barrier and studies describing their research participation experience are lacking.

Objectives: To examine the research participation experience of bereaved parents of children with CCCs and to identify factors associated with distress or benefit.

Methods: In this cross-sectional study, parents of deceased children who received care at Boston Children's Hospital between 2006 and 2015 completed survey questions describing their research participation experience after completing the Survey About Caring for Children with CCCs. Multivariable logistic regression was used to identify factors associated with perceived distress or benefit with participation. Free responses were analyzed using qualitative techniques.

Results: One hundred fourteen (54%) of 211 eligible parents completed the survey a median of 3.9 years (interquartile range, 2.1-6.5) after their child's death. Most parents felt comfortable (78%) and reported benefit (88%) from survey participation. Only 6% of parents reported "a great deal" of distress with participation, and of those, 67% still found it beneficial. Being at least moderately spiritual was associated with benefit (adjusted odds ratio 7.12 [95% CI: 1.58-32.1]), while parental decisional regret was associated with distress (adjusted odds ratio 3.41 [95% CI: 1.33-8.72]). Benefit was the most common domain identified, with parents expressing appreciation for the opportunity to help others and share their story.

Conclusion: A majority of parents responded to questions about their child's end-of-life care without significant distress. When present, distress was often accompanied by a perception that participation was beneficial.
View Article and Find Full Text PDF

Download full-text PDF

 Source
http://dx.doi.org/10.1016/j.jpainsymman.2020.11.018DOI Listing
December 2020

Parent and patient perceptions of medical marijuana in the childhood cancer context.

Authors:
Prasanna Ananth Anna Revette Anne Reed-Weston Porag Das Joanne Wolfe

Pediatr Blood Cancer 2021 Apr 30;68(4):e28830. Epub 2020 Nov 30.

Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute and Department of Pediatrics, Boston Children's Hospital, Boston, Massachusetts.

Background: Medical marijuana (MM) is legal in 34 US jurisdictions. Yet, little is known about patient and parent perceptions of MM in pediatric cancer care. We examined attitudes, beliefs, and experiences regarding MM among parents of children with cancer and adolescent and young adult (AYA) patients, to help frame future research initiatives.

Procedure: In this qualitative study, we conducted semi-structured, one-on-one interviews with parents and AYAs at a comprehensive cancer center. Interviews were audio-recorded, transcribed, and coded using both descriptive and inductive coding approaches. We used content and framework analysis to identify key themes.

Results: Fifteen parents and 15 AYAs enrolled. Participants were generally receptive to MM use, concurrently weighing benefits and risks. Participants most often endorsed MM use for relief of nausea, anorexia, and pain. Simultaneously, participants identified concerns about MM, including potential physiologic and psychological effects on children and lack of research. However, concerns were frequently minimized, relative to chemotherapy or supportive care medications with perceived greater side effect profiles. Many participants expressed uncertainty regarding legal access, citing complex processes to obtain MM. Few participants had discussed MM with their oncologist, instead seeking guidance from the internet, family, or peers. Importantly, we elicited several misconceptions regarding MM, including its utility as cancer-directed therapy.

Conclusion: Patients and families are receptive to using MM, motivated by potential for symptom relief and cancer-directed effects. Yet, lack of empiric evidence is a barrier, underscoring the need for robust clinical trial data to support MM recommendations and use.
View Article and Find Full Text PDF

Download full-text PDF

 Source
http://dx.doi.org/10.1002/pbc.28830DOI Listing
April 2021

Parental Perceptions of Hospital-Based Bereavement Support Following a Child's Death From Cancer: Room for Improvement.

Authors:
Gabrielle Helton Sue E Morris Olivia R Dole Joanne Wolfe Jennifer M Snaman

J Pain Symptom Manage 2020 Nov 14. Epub 2020 Nov 14.

Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA, USA; Department of Pediatrics Boston Children's Hospital, Boston, MA, USA. Electronic address:

Context: The death of a child from cancer is a devastating event, placing bereaved parents at risk for both physical and psychosocial morbidities. Despite growing awareness of these outcomes and increased hospital-based support, bereaved parents continue to express a desire for additional assistance.

Objectives: We examined parental perceptions of bereavement support from the clinical teams and institution and suggested modifications to hospital support strategies.

Methods: We explored the answers to four questions on the bereavement support provided from the care team and institutional mailings from a larger survey, querying parents of children who died from cancer 6 to 24 months prior to participation. Answers were Likert scale based with additional free-text responses.

Results: Forty-nine parents completed the survey (response rate 36%). The respondents were predominantly white (N = 43, 88%), female (N = 32, 65%), and non-Hispanic/Latino (N = 43, 88%). The mean length of time from child's death to completion was 13 months. Twenty-seven (55%) and 26 (53%) parents indicated that contact with care team and mailings, respectively, were at least a little helpful in their grief experience. In free-text responses, parents identified support outside the hospital (28 respondents), groups and events hosted by the hospital or hospice (8), contact with care team (3), and hospital mailings (1) as the most helpful. Findings support modifications to hospital support strategies.

Conclusions: Bereaved parents request additional supportive services. Using the parents' perspective and recommendations, we outline options to augment support and provide a variety of supportive resources for bereaved parents to access in their own time.
View Article and Find Full Text PDF

Download full-text PDF

 Source
http://dx.doi.org/10.1016/j.jpainsymman.2020.11.012DOI Listing
November 2020

Spanish Adaptation of the Pediatric Memorial Symptom Assessment Scale for Children, Teens, and Caregivers.

Authors:
Maria Laura Requena Liliana Orellana Valeria Cordeiro Flavia Luna Maria S Bevilacqua Karina Gomez Joanne Wolfe Veronica Dussel

J Pain Symptom Manage 2020 Oct 28. Epub 2020 Oct 28.

Centro de Investigación e Implementación en Cuidados Paliativos, Instituto de Efectividad Clínica y Sanitaria, Buenos Aires, Argentina; Dana-Farber/Boston Children's Cancer and Blood Disorders Center, Boston, Massachusetts, USA. Electronic address:

Context: There are no validated Spanish tools to assess symptom burden in pediatric cancer. The Pediatric Memorial Symptom Assessment Scale (Pediatric-MSAS) is an English valid multidimensional and comprehensive instrument.

Objectives: To validate Pediatric-MSAS-Spanish (MSAS-Child, MSAS-Teen, and MSAS-Caregiver versions) in patients with cancer treated in two public hospitals in Buenos Aires, Argentina.

Methods: Cross-sectional study, classical psychometric theory. We recruited a convenience sample of 148 caregivers of children ≥ two years, 51 young children (seven to 12 years), and 48 adolescents (≥13 years). We assessed feasibility, comprehensibility, internal consistency, and convergent and known-groups validity.

Results: Pediatric-MSAS-Spanish was feasible, acceptable, and comprehensible. Reliability of MSAS-total and subscale scores was satisfactory (Cronbach alpha: 0.90, 0.89, 0.71, respectively, for caregiver, teen, and child MSAS-total score). MSAS-total caregiver, teen, and child scores met a priori criteria for convergent validity correlating with Pediatric Quality of Life Inventory total scores (Spearman correlation (r) = -0.59, -0.66, and -0.32, respectively) and visual -analogue well-being scores (r = -0.63, -0.46, and -0.4, respectively). Caregiver-teen correlation was strong for total (r = 0.78) and physical (r = 0.85) scores, and moderate for global distress index (r = 0.64) and psychological (r = 0.45) scores. MSAS-total caregiver-child correlation was moderate (r = 0.30) and Kappa analysis showed poor agreement. All MSAS-Caregiver scores and MSAS-Teen total and physical scores differentiated inpatients/outpatients and patients on/off-treatment, while MSAS-Teen psychological and global distress index subscales or MSAS-Child scores did not.

Conclusion: Pediatric-MSAS-Spanish is feasible and reliable for assessing symptom burden in children with cancer. Validity of MSAS-Caregiver and MSAS-Teen was largely supported. Further work on MSAS-Child is warranted.
View Article and Find Full Text PDF

Download full-text PDF

 Source
http://dx.doi.org/10.1016/j.jpainsymman.2020.10.022DOI Listing
October 2020

MyPref: pilot study of a novel communication and decision-making tool for adolescents and young adults with advanced cancer.

Authors:
Jennifer M Snaman Gabrielle Helton Rachel L Holder Eve Wittenberg Anna Revette James A Tulsky Justin N Baker Joanne Wolfe

Support Care Cancer 2020 Oct 8. Epub 2020 Oct 8.

Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, 450 Brookline Ave, Boston, MA, 02215, USA.

Purpose: Adolescents and young adults (AYAs) with cancer report feeling ill-informed about their cancer treatment options. Tools are needed to inform AYAs about treatment choices and amplify the AYA's voice in medical decision-making. We developed MyPref, a conjoint-analysis based tool that quantifies AYA preferences for future cancer treatments.

Methods: We conducted a staged pilot study of MyPref utilizing an intervention mixed methods design. AYAs and their parent or trusted person (PTP) completed MyPref and received a summary report of their preferences for treatment-related factors. Participants later completed the Preparation for Decision Making Scale and MyPref Experience Questionnaire and engaged in semi-structured interviews. Oncologists reported on the perceived accuracy and utility of MyPref. We used a weaving technique for presenting mixed methods data.

Results: Fifteen AYAs with advanced cancer, 7 PTPs, and 12 providers participated in this pilot; 32 (94%) completed all study items. AYA/PTPs stated study participation was useful and believed MyPref allowed for improved understanding of treatment factors and consideration, organization, and visualization of preferences. All providers agreed that MyPref made them think about patient's preferences and 9 (75%) reported they planned to change their approach to discussions about preferences for future treatments.

Conclusion: MyPref is an objective way to estimate AYA and PTP preferences for future treatment characteristics. This novel tool may be a useful way to engage AYAs and PTPs in discussions around preferences for treatment and prepare AYAs for future decision-making. We are currently evaluating this tool longitudinally to determine the impact on actual treatment decisions.
View Article and Find Full Text PDF

Download full-text PDF

 Source
http://dx.doi.org/10.1007/s00520-020-05806-1DOI Listing
October 2020

Identification of adolescents and young adults' preferences and priorities for future cancer treatment using a novel decision-making tool.

Authors:
Jennifer M Snaman Gabrielle Helton Rachel L Holder Anna Revette Justin N Baker Joanne Wolfe

Pediatr Blood Cancer 2021 Jan 5;68(1):e28755. Epub 2020 Oct 5.

Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts.

Background: Adolescents and young adults (AYAs) with cancer receive high-intensity care and experience significant symptoms at the end of life. As novel cancer-directed therapies increase, AYAs with advanced cancer may face multiple treatment options, each with unique risk/benefit profiles. To augment the AYAs' voice in the decision-making process, we developed MyPref, an adaptive conjoint analysis-based tool.

Procedure: We conducted a three-staged pilot study of MyPref utilizing an exploratory intervention mixed methods design. AYAs and their identified parent or trusted person (PTP) completed MyPref and received a summary of their preferences for nine treatment-related factors. Participants later engaged in semi-structured interviews to further explore their experience with MyPref. Responses to free text questions and interviews were analyzed using qualitative techniques.

Results: Fifteen AYAs with advanced cancer and seven PTPs participated in the pilot. While most participants identified time until cancer grows, quality of life, and side effects to be the most important factors when considering a future treatment, preferences were highly varied. Notably, MyPref-calculated preferences differed from initial rank order, and participants indicated that calculated preferences were accurate in follow-up interviews.

Conclusion: The MyPref-calculated preferences varied by individual and differed from initial rank ordering. Additionally, there was variability in how individuals defined and prioritized treatment-related factors. This novel tool may be a useful way to engage AYAs and their PTPs in discussions around preferences for treatment and prepare AYAs for future decision making. We plan to evaluate this tool longitudinally to evaluate the impact on actual treatment decisions.
View Article and Find Full Text PDF

Download full-text PDF

 Source
http://dx.doi.org/10.1002/pbc.28755DOI Listing
January 2021

Engaging Parents of Children Who Died From Cancer in Research on the Early Grief Experience.

Authors:
Jennifer M Snaman Gabrielle Helton Justin N Baker Sue E Morris Hasan Al-Sayegh Clement Ma Joanne Wolfe

J Pain Symptom Manage 2020 Sep 16. Epub 2020 Sep 16.

Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA, USA; Department of Pediatrics, Boston Children's Hospital, Boston, MA, USA.

Context: Bereaved parents provide an important perspective for improving care for patients and families throughout the illness and after a child's death. However, involvement of bereaved parents in research studies is fraught with concerns over inflicting psychological distress and issues with study recruitment. Data on research strategies to engage parents early in their bereavement are limited.

Objectives: To describe involvement of bereaved parents in the development of a comprehensive survey, examine the response rates with varying recruitment strategies and describe participation experiences of parent participants.

Methods: Parents of children who endured the death of their child from cancer six to 24 months prior were invited to complete a 195-item survey examining their early grief experience.

Results: Forty-nine of the 137 eligible parents from 36 different households completed the survey (response rate 36%). The respondents were predominantly white (N = 43; 88%), female (N = 32; 65%), and non-Hispanic (N = 43; 88%). The median length of time from child's death to survey completion was 11 months (range 7-26). Thirty parents (61%) indicated they were comfortable/very comfortable answering the survey, 40 (82%) answered that they experienced at least a little benefit from involvement, and 36 (73%) indicated they experienced at least some distress.

Conclusion: Some parents of children who died of cancer are willing to participate in research early in their bereavement, and although most experience some distress, they are comfortable answering questions about their experience and benefit from participation. Recruitment strategies including personal outreach may result in better response rates.
View Article and Find Full Text PDF

Download full-text PDF

 Source
http://dx.doi.org/10.1016/j.jpainsymman.2020.09.014DOI Listing
September 2020

Development of a Stakeholder Driven Serious Illness Communication Program for Advance Care Planning in Children, Adolescents, and Young Adults with Serious Illness.

Authors:
Danielle D DeCourcey Lindsay Partin Anna Revette Rachelle Bernacki Joanne Wolfe

J Pediatr 2021 Feb 16;229:247-258.e8. Epub 2020 Sep 16.

Department of Pediatrics, Boston Children's Hospital, Boston, MA; Department of Psychosocial Oncology and Palliative Care, Dana Farber Cancer Institute, Boston, MA.

Objectives: To develop a generalizable advance care planning (ACP) intervention for children, adolescents, and young adults with serious illness using a multistage, stakeholder-driven approach.

Study Design: We first convened an expert panel of multidisciplinary health care providers (HCPs), researchers, and parents to delineate key ACP intervention elements. We then adapted an existing adult guide for use in pediatrics and conducted focus groups and interviews with HCPs, parents, and seriously ill adolescents and young adults to contextualize perspectives on ACP communication and our Pediatric Serious Illness Communication Program (PediSICP). Using thematic analysis, we identified guide adaptations, preferred content, and barriers for Pedi-SICP implementation. Expert panelists then reviewed, amended and finalized intervention components.

Results: Stakeholders (34 HCPs, 9 parents, and 7 seriously ill adolescents and young adults) participated in focus groups and interviews. Stakeholders validated and refined the guide and PediSICP intervention and identified barriers to PediSICP implementation, including the need for HCP training, competing demands, uncertainty regarding timing, and documentation of ACP discussions.

Conclusions: The finalized PediSICP intervention includes a structured HCP and family ACP communication occasion supported by a 3-part communication tool and bolstered by focused HCP training. We also identified strategies to ameliorate implementation barriers. Future research will determine the feasibility of the PediSICP and whether it improves care alignment with patient and family goals.
View Article and Find Full Text PDF

Download full-text PDF

 Source
http://dx.doi.org/10.1016/j.jpeds.2020.09.030DOI Listing
February 2021

To Disclose or Not to Disclose: A Case Highlighting the Challenge of Conflicts in Pediatric Disclosure.

Authors:
Isaac Martinez Anna Hoppmann Sam Perna Paul Byrd Joanne Wolfe Jamie Aye Emily E Johnston

J Pain Symptom Manage 2021 01 2;61(1):211-215. Epub 2020 Sep 2.

Department of Pediatrics, University of Alabama at Birmingham, Birmingham, Alabama, USA; Institute for Cancer Outcomes and Survivorship, University of Alabama at Birmingham, Birmingham, Alabama, USA. Electronic address:

View Article and Find Full Text PDF

Download full-text PDF

 Source
http://dx.doi.org/10.1016/j.jpainsymman.2020.07.042DOI Listing
January 2021

Definitely Mixed Feelings: The Effect of COVID-19 on Bereavement in Parents of Children Who Died of Cancer.

Authors:
Gabrielle Helton Joanne Wolfe Jennifer M Snaman

J Pain Symptom Manage 2020 Nov 2;60(5):e15-e20. Epub 2020 Sep 2.

Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts, USA; Department of Pediatrics, Boston Children's Hospital, Boston, Massachusetts, USA. Electronic address:

Context: Coronavirus disease 2019 (COVID-19) has impacted most elements of daily life, including the provision of support after a child's death and the experience of parental bereavement.

Objectives: This study aims to examine ways in which COVID-19 has affected the bereavement experiences of parents whose children died of cancer before the pandemic.

Methods: Parents who participated in a survey-based study examining the early grief experience were invited to complete a semistructured interview. During the interview, which focused on examining the current support for parents and other family members within the first several years after the child's death, participants were asked how COVID-19 has impacted their life and bereavement.

Results: Fifteen of 33 eligible parents completed the interview; 14 were white and non-Hispanic, five were males. Parents participated an average of 19 (range 12-34) months after their child's death. COVID-19 was addressed in 13 interviews. Eleven codes were used to describe interview segments; the most commonly used codes were change in support, no effect, familiarity with uncertainty/ability to cope, and change in contact with care/research team.

Conclusion: Parents identified multiple and variable ways-both positive, negative, and neutral-how COVID-19 has affected their bereavement. Many parents commented on feeling more isolated because of the inability to connect with family or attend in-person support groups, whereas others acknowledged their experience has made them uniquely positioned to cope with the uncertainty of the current situation. Clinicians must find innovative ways to connect with and support bereaved parents during this unique time.
View Article and Find Full Text PDF

Download full-text PDF

 Source
http://dx.doi.org/10.1016/j.jpainsymman.2020.08.035DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7467087PMC
November 2020

Parent Perceptions of Team-Delivered Care for Children With Advanced Cancer: A Report From the PediQUEST Study.

Authors:
Angela M Feraco Prasanna Ananth Veronica Dussel Hasan Al-Sayegh Clement Ma Abby R Rosenberg Chris Feudtner Joanne Wolfe

J Pain Symptom Manage 2020 10 22;60(4):811-817. Epub 2020 May 22.

Dana-Farber Cancer Institute, Boston Children's Hospital, Harvard Medical School, Boston, Massachusetts, USA.

Context: Childhood cancer care is delivered by interprofessional health care teams; however, little is known about how parents perceive overall team-delivered care (TDC).

Objectives: We sought to describe parent perceptions of TDC and associated factors, including care rendered by individual clinicians, teamwork, information consistency, and patient and parent characteristics.

Methods: Cross-sectional surveys were distributed to parents of 104 children with recurrent/refractory cancer enrolled in a multisite symptom management trial. The primary outcome, TDC, was parent report of care quality delivered by the child's care team during the preceding three months. Likert-scaled items (excellent/very good/good/fair/poor) queried care quality delivered by individual clinicians, perceived teamwork, and other factors. Factors associated with parent perceptions of excellent TDC were identified using Fisher's exact test.

Results: Eighty-six parents (83%) responded. During the preceding three months, 63% (n = 54) of parents reported excellent TDC. However, only 47% (n = 40) described their care team's teamwork as excellent. Approximately one-quarter (24%) described care rendered by their child's oncologist as less-than-excellent. Among parents who reported psychosocial clinician involvement (71%; n = 60), only 43% described this care as excellent. Individually, excellent care from each clinician type (oncologist, psychosocial clinician, and primary nurse) was associated with excellent TDC (all P ≤ 0.001; no correction for multiple comparisons).

Conclusion: Among parents of children with advanced cancer, more than one-third report less-than-excellent TDC. In addition, less than half report excellent teamwork, and ratings of care rendered by individual clinicians are highly variable. Findings suggest that interventions are needed to enhance interprofessional teamwork in the care of children with advanced cancer.
View Article and Find Full Text PDF

Download full-text PDF

 Source
http://dx.doi.org/10.1016/j.jpainsymman.2020.05.019DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7508972PMC
October 2020

Paediatric palliative care research come of age.

Authors:
Joanne Wolfe Myra Bluebond-Langner

Palliat Med 2020 03;34(3):259-261

UCL-School of Life and Medical Sciences, Faculty of Population Health Sciences, UCL Great Ormond Street Institute of Child Health, Population, Policy and Practice Research and Teaching Department, Louis Dundas Centre for Children's Palliative Care, London, UK and Rutgers University, Camden, New Jersy, USA. Professor Bluebond-Langner's post is supported by True Colours Trust.

View Article and Find Full Text PDF

Download full-text PDF

 Source
http://dx.doi.org/10.1177/0269216320905029DOI Listing
March 2020

Pediatric Palliative Care in Oncology.

Authors:
Jennifer Snaman Sarah McCarthy Lori Wiener Joanne Wolfe

J Clin Oncol 2020 03 5;38(9):954-962. Epub 2020 Feb 5.

Dana-Farber Cancer Institute, Boston, MA.

Pediatric palliative care aims to alleviate suffering and improve the quality of life of children with serious disease and increase support for their parents and other family members. Integration of palliative care into the routine care of children, adolescents, and young adults with cancer has resulted in improved outcomes in patients and their families. The field of pediatric palliative oncology-encompassing primary palliative care provided by the multidisciplinary oncology team as well as subspecialty palliative care provided by the palliative care team for more complex cases-is unique from palliative care in adults given its focus on care of the child and the larger family. In this review, we focus on advancements in the specific domains within pediatric palliative oncology care including family-centered communication, assessment and management of physical symptoms and distress, psychosocial concerns, and spiritual considerations of the patient, parents, and siblings.
View Article and Find Full Text PDF

Download full-text PDF

 Source
http://dx.doi.org/10.1200/JCO.18.02331DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7082155PMC
March 2020

Hospital or Home? Where Should Children Die and How Do We Make That a Reality?

Authors:
Emily E Johnston Isaac Martinez Erin Currie Katharine E Brock Joanne Wolfe

J Pain Symptom Manage 2020 07 28;60(1):106-115. Epub 2019 Dec 28.

Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts, USA; Department of Pediatrics, Boston Children's Hospital, Boston, Massachusetts, USA.

Context: Most of the 20,000 U.S. children dying of serious illnesses annually die in the hospital. It is unknown if this hospital death predominance reflects family wishes or systemic issues such as lack of hospice access. Hence, we need to better understand location of death preferences for children and their families.

Objective: To better understand location of death preferences in North America, we reviewed the literature to examine the evidence for and against home death in seriously ill children (0-18 years).

Methods: We searched English articles in PubMed, PsycINFO, and Embase published during 2000-2018 for articles related to parental, child/adolescent, and provider preference for death location and articles that correlated death location with bereavement or quality of life outcomes.

Results: The search results (n = 877 articles and n = 58 abstracts of interest) were reviewed, and 34 relevant articles were identified. Parent, child, and provider preferences, bereavement outcomes, and associated factors all point to some preference for home death. These findings should be interpreted with several caveats: 1) many studies are small and prone to selection bias, 2) not all families prefer home death and some that do are not able to achieve home death due to inadequate home support, 3) studies of bereavement outcomes are lacking.

Conclusion: Adequate resources are needed to ensure children can die in their chosen location-be that home, hospital, or free-standing hospice. This review highlights research areas needed to better understand death location preference and programs and policies that will support home death for those that desire it.
View Article and Find Full Text PDF

Download full-text PDF

 Source
http://dx.doi.org/10.1016/j.jpainsymman.2019.12.370DOI Listing
July 2020

Reconsidering early parental grief following the death of a child from cancer: a new framework for future research and bereavement support.

Authors:
Jennifer Snaman Sue E Morris Abby R Rosenberg Rachel Holder Justin Baker Joanne Wolfe

Support Care Cancer 2020 Sep 24;28(9):4131-4139. Epub 2019 Dec 24.

Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, 450 Brookline Ave., Boston, MA, 02215, USA.

Purpose: Parents of children that die from cancer are at increased risk of significant long-term psychosocial and physical morbidities. Less, however, is known about the experience of parents early in the grief process. Currently used frameworks and instruments used to understand and assess outcomes in parents early in the grief experience are inadequate and may serve to pathologize the normal grief response.

Methods: Through review of the literature, previously conducted qualitative work, and extensive clinical experience working with bereaved parents, we developed a new framework for understanding, assessing, and studying parental grief during the first 2 years following the death of a child from cancer.

Results: Our novel longitudinal framework hypothesizes that short- and long-term psychosocial sequalae in parents following the death of a child from cancer depend not only on pre-death factors but on the support present through the disease experience and the oscillation between protective factors and risk factors in the post-death period. We further hypothesize that protective factors and risk factors may be modifiable, making them key potential targets for supportive interventions aimed at augmenting protective factors and diminishing the effect of risk factors.

Conclusion: This is a new framework for understanding and assessing the grief experience of parents within the first 2 years of a child's death. Many questions about how best to support parents following the death of a child from cancer remain providing ample opportunities for future research and development of interventions to improve both short- and long-term outcomes in bereaved parents.
View Article and Find Full Text PDF

Download full-text PDF

 Source
http://dx.doi.org/10.1007/s00520-019-05249-3DOI Listing
September 2020

Response to Suffering of the Seriously Ill Child: A History of Palliative Care for Children.

Authors:
Bryan A Sisk Chris Feudtner Myra Bluebond-Langner Barbara Sourkes Pamela S Hinds Joanne Wolfe

Pediatrics 2020 01 5;145(1). Epub 2019 Dec 5.

Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts; and.

Most pediatric clinicians aspire to promote the physical, emotional, and developmental well-being of children, hoping to bestow a long and healthy life. Yet, some infants, children, and adolescents confront life-threatening illnesses and life-shortening conditions. Over the past 70 years, the clinician's response to the suffering of these children has evolved from veritable neglect to the development of pediatric palliative care as a subspecialty devoted to their care. In this article, we review the history of how clinicians have understood and responded to the suffering of children with serious illnesses, highlighting how an initially narrow focus on anxiety eventually transformed into a holistic, multidimensional awareness of suffering. Through this transition, and influenced by the adult hospice movement, pediatric palliative care emerged as a new discipline. Becoming a discipline, however, has not been a panacea. We conclude by highlighting challenges remaining for the next generation of pediatric palliative care professionals to address.
View Article and Find Full Text PDF

Download full-text PDF

 Source
http://dx.doi.org/10.1542/peds.2019-1741DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6939842PMC
January 2020

Palliative radiotherapy for pediatric patients: Parental perceptions of indication, intent, and outcomes.

Authors:
Becky K Lee Patrick J Boyle Cierra Zaslowe-Dude Joanne Wolfe Karen J Marcus

Pediatr Blood Cancer 2020 01 4;67(1):e28003. Epub 2019 Oct 4.

Dana-Farber/Boston Children's Cancer and Blood Disorders Center, Boston, Massachusetts.

Objectives: Palliative radiation therapy (pRT) is often used to improve quality of life for pediatric patients. Though palliative doses are generally lower than those for cure, pRT may still introduce undesirable effects. The decision to pursue additional therapy for a child may be challenging and depends on parents' knowledge and expectations. The goal of this study was to explore parental perceptions of pRT.

Methods: Twenty-eight children referred for pRT were enrolled in our prospective study. Parents were counseled regarding the indication and expected outcomes. They then completed a series of questionnaires to assess their understanding of pRT, side effects that their child experienced, and how the outcomes compared to their expectations.

Results: The majority of parents listed pain relief and addressing new disease as the main indication for pRT. When asked about expectations, the majority chose improvement in quality of life and prolongation of their child's life. Interestingly, 32% of parents expected pRT to cure their child's disease. Most patients undergoing pRT did not experience any adverse symptoms. The outcomes of pRT in the majority of cases exceeded parental expectations.

Conclusion: Improved quality of life with pRT sometimes blurs the distinction between palliation and cure. We found that most parents understand the aim to improve quality of life, although a proportion of parents perceived pRT as a cure to their child's disease. Despite this, the majority of parents reported that the outcome of the pRT course exceeded their expectations. We postulate that parents derive comfort from pursuing active treatment.
View Article and Find Full Text PDF

Download full-text PDF

 Source
http://dx.doi.org/10.1002/pbc.28003DOI Listing
January 2020

Challenges and Priorities for Pediatric Palliative Care Research in the U.S. and Similar Practice Settings: Report From a Pediatric Palliative Care Research Network Workshop.

Authors:
Chris Feudtner Abby R Rosenberg Renee D Boss Lori Wiener Maureen E Lyon Pamela S Hinds Myra Bluebond-Langner Joanne Wolfe

J Pain Symptom Manage 2019 11 21;58(5):909-917.e3. Epub 2019 Aug 21.

Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts; Department of Pediatrics, Boston Children's Hospital, Boston, Massachusetts, USA.

Context: To dramatically advance the evidence base for pediatric palliative care (PPC) interventions, practices, and programs in the U.S. and similar practice settings, the field needs to better understand the challenges and opportunities for rigorous scholarship.

Objectives: The Pediatric Palliative Care Research Network conducted a workshop to clarify challenges and identify key priorities.

Methods: The workshop focused on PPC research topics and methods, including outcomes measurement, qualitative inquiry, analyses of big data, prospective collection of research data, case series and cohort studies, and intervention trials, with synthesizing summary and follow-up discussions. All attendees reviewed and approved the final report.

Results: Five common challenges were identified: patient diversity and small population size; interdependencies and dynamic interactions between child, family members, and disease processes over time; outcomes and measurement; workforce and infrastructure limitations; and presumed burden of PPC research on participants. Seven priorities emerged: bolster training and development of PPC investigators; develop core resources; advance symptom measurement (and measurements of other exposures and outcomes); improve symptom management and quality of life interventions; improve communication, elicitation of goals of care, and decision making; understand family impact and facilitate or improve family adaptation and coping; and analyze and improve systems of care, policy, and education.

Conclusion: These challenges and priorities identify key research areas that can guide individual investigators and research funders to advance the field.
View Article and Find Full Text PDF

Download full-text PDF

 Source
http://dx.doi.org/10.1016/j.jpainsymman.2019.08.011DOI Listing
November 2019

Impact of Specialized Pediatric Palliative Care: A Systematic Review.

Authors:
Katherine L Marcus Gisella Santos Agustín Ciapponi Daniel Comandé Madeline Bilodeau Joanne Wolfe Veronica Dussel

J Pain Symptom Manage 2020 02 9;59(2):339-364.e10. Epub 2019 Aug 9.

Center for Research and Implementation in Palliative Care, Instituto de Efectividad Clinica y Sanitaria, Buenos Aires, Argentina; Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts, USA. Electronic address:

Context: Specialized pediatric palliative care (SPPC) is increasingly involved in the care of seriously ill children, yet the evidence on its impact has not been comprehensively reviewed.

Objective: The objective of this study was to assess the effects of providing SPPC to seriously ill children on patient-, caregiver-, and systems-level outcomes.

Methods: We performed a Systematic Review following Cochrane methods.

Data Sources: Medline, Embase, PsycINFO, Global Health, The Cochrane Central Register of Controlled Trials, LILACS, and Web of Science were searched from January 1996 to June 2018.

Study Selection/data Extraction: We included randomized controlled, cohort, case-control, and before-after studies in which exposure to SPPC services was the intervention of interest. All outcomes reported in these studies were included. Two investigators independently selected articles, extracted data, and assessed risk of bias of included studies using standardized criteria.

Results: Twenty-four studies were included in qualitative synthesis: one nonrandomized controlled trial, 16 cohort studies, and seven before-after studies. Evidence certainty was low. Twenty-one studies had one or more area with high risk of bias, most commonly selection bias, low group comparability, risk for confounding, and inadequate statistical reporting. Studies analyzed 46 domains, operationalized as 136 distinct outcomes. SPPC was associated with better child quality of life scores in all four studies that assessed this outcome. No other outcome showed this consistency.

Conclusion: Receiving SPPC was associated with better child quality of life. However, the paucity and low certainty of the evidence precluded any firm recommendations about SPPC practice. Larger collaborative networks and greater consensus regarding SPPC research standards are needed.
View Article and Find Full Text PDF

Download full-text PDF

 Source
http://dx.doi.org/10.1016/j.jpainsymman.2019.08.005DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6989377PMC
February 2020

Integration of Pediatric Palliative Care Into Cardiac Intensive Care: A Champion-Based Model.

Authors:
Katie M Moynihan Jennifer M Snaman Erica C Kaye Wynne E Morrison Aaron G DeWitt Loren D Sacks Jess L Thompson Jennifer M Hwang Valerie Bailey Deborah A Lafond Joanne Wolfe Elizabeth D Blume

Pediatrics 2019 08;144(2)

Division of Cardiovascular Critical Care, Department of Cardiology, Boston Children's Hospital Boston, Massachusetts.

Integration of pediatric palliative care (PPC) into management of children with serious illness and their families is endorsed as the standard of care. Despite this, timely referral to and integration of PPC into the traditionally cure-oriented cardiac ICU (CICU) remains variable. Despite dramatic declines in mortality in pediatric cardiac disease, key challenges confront the CICU community. Given increasing comorbidities, technological dependence, lengthy recurrent hospitalizations, and interventions risking significant morbidity, many patients in the CICU would benefit from PPC involvement across the illness trajectory. Current PPC delivery models have inherent disadvantages, insufficiently address the unique aspects of the CICU setting, place significant burden on subspecialty PPC teams, and fail to use CICU clinician skill sets. We therefore propose a novel conceptual framework for PPC-CICU integration based on literature review and expert interdisciplinary, multi-institutional consensus-building. This model uses interdisciplinary CICU-based champions who receive additional PPC training through courses and subspecialty rotations. PPC champions strengthen CICU PPC provision by (1) leading PPC-specific educational training of CICU staff; (2) liaising between CICU and PPC, improving use of support staff and encouraging earlier subspecialty PPC involvement in complex patients' management; and (3) developing and implementing quality improvement initiatives and CICU-specific PPC protocols. Our PPC-CICU integration model is designed for adaptability within institutional, cultural, financial, and logistic constraints, with potential applications in other pediatric settings, including ICUs. Although the PPC champion framework offers several unique advantages, barriers to implementation are anticipated and additional research is needed to investigate the model's feasibility, acceptability, and efficacy.
View Article and Find Full Text PDF

Download full-text PDF

 Source
http://dx.doi.org/10.1542/peds.2019-0160DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6855829PMC
August 2019

Models of Pediatric Palliative Oncology Outpatient Care-Benefits, Challenges, and Opportunities.

Authors:
Katharine E Brock Jennifer M Snaman Erica C Kaye Kimberly A Bower Meaghann S Weaver Justin N Baker Joanne Wolfe Christina Ullrich

J Oncol Pract 2019 09 19;15(9):476-487. Epub 2019 Jul 19.

Dana-Farber Cancer Institute, Boston, MA.

Purpose: Although the bulk of current pediatric palliative care (PPC) services are concentrated in inpatient settings, the vast majority of clinical care, symptom assessment and management, decision-making, and advance care planning occurs in the outpatient and home settings. As integrated PPC/pediatric oncology becomes the standard of care, novel pediatric palliative oncology (PPO) outpatient models are emerging. The optimal PPO model is unknown and likely varies on the basis of institutional culture, resources, space, and personnel.

Methods: We review five institutions' unique outpatient PPO clinical models with their respective benefits and challenges. This review offers pragmatic guidance regarding PPO clinic development, implementation, and resource allocation.

Results: Specific examples include a floating clinic model, embedded disease-specific PPC experts, embedded consultative or trigger-based supportive care clinics, and telehealth clinics.

Conclusion: Organizations that have overcome personnel, funding, and logistical challenges can serve as role models for centers developing PPO clinic models. In the absence of a one-size-fits-all model, pediatric oncology and PPC groups can select, tailor, and implement the model that best suits their respective personnel, needs, and capacities. Emerging PPO clinics must balance the challenges and opportunities unique to their organization, with the goal of providing high-quality PPC for children with cancer and their families.
View Article and Find Full Text PDF

Download full-text PDF

 Source
http://dx.doi.org/10.1200/JOP.19.00100DOI Listing
September 2019

Development of a Pediatric Palliative Care Curriculum and Dissemination Model: Education in Palliative and End-of-Life Care (EPEC) Pediatrics.

Authors:
Stefan J Friedrichsdorf Stacy Remke Joshua Hauser Laurie Foster Andrea Postier Alison Kolste Joanne Wolfe

J Pain Symptom Manage 2019 10 18;58(4):707-720.e3. Epub 2019 Jun 18.

Dana-Farber Cancer Institute, Boston, Massachusetts, USA; Boston Children's Hospital, Boston, Massachusetts, USA.

Context: Most children living and dying with serious illnesses experience high burden of distressing symptoms. Many seriously ill children and their families do not have access to subspecialist pediatric palliative care (PPC) services nor to clinicians trained in primary PPC. Lack of PPC education appears to be a significant barrier to PPC implementation.

Objectives: Description of the development and dissemination of Education in Palliative and End-of-Life Care (EPEC)-Pediatrics.

Methods: Funded through a U.S. $1.6 million National Institutes of Health/National Cancer Institute grant 2010-2017, this 24-module curriculum was designed to teach primary palliative care. The target audience included interprofessional pediatric hematology/oncology providers and all other clinicians caring for seriously ill children.

Results: The curriculum is delivered in a combination of online learning and in-person, face-to-face sessions. In addition, a one-day Professional Development Workshop was developed to teach EPEC-Pediatrics graduates, future "Trainers," thus becoming "Master Facilitators." Between 2012-May 2019, a total of 867 EPEC-Pediatric Trainers and 75 Master Facilitators from 58 countries participated in 17 Become an EPEC-Pediatrics-Trainer conferences and three Professional Development Workshops. The curriculum has also been adapted for large-scale dissemination across Canada and Latin-America, with translation to French and Spanish. Participants overwhelmingly report improvements in their PPC knowledge, attitudes, and skills, including teaching. Trainers subsequently anticipated improvements in patient care for children with serious illness at their home institutions.

Conclusion: EPEC-Pediatrics has developed into the most comprehensive PPC curriculum worldwide. It is highly adaptable for local settings, became self-sustaining and six conferences are offered around the world in 2019.
View Article and Find Full Text PDF

Download full-text PDF

 Source
http://dx.doi.org/10.1016/j.jpainsymman.2019.06.008DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6754756PMC
October 2019

Experience of parents receiving results from a quality-of-life study in pediatric advanced cancer: A report from the PediQUEST study.

Authors:
Madeline Bilodeau Veronica Dussel Joanne Wolfe

Pediatr Blood Cancer 2019 09 17;66(9):e27880. Epub 2019 Jun 17.

Pediatric Palliative Care Service, Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts.

Little is known about the experience of parents receiving results of quality-of-life research in pediatric advanced cancer. The PediQUEST study participants who indicated interest in results during enrollment were mailed summarized findings and the Disseminating Quality-of-Life Research Questionnaire. Respondents (86%,12/14) reported feeling more than "a little" recognized, grateful, or satisfied to receive results. Concurrently, 43% (6/14) endorsed feeling more than "a little" sad, confused, or anxious. Nonetheless, 81% (13/16) prefer to be informed in the future. Although parents experience a spectrum of strong emotions, our findings suggest quality-of-life study results should be shared.
View Article and Find Full Text PDF

Download full-text PDF

 Source
http://dx.doi.org/10.1002/pbc.27880DOI Listing
September 2019

Palliative care and paediatric cardiology: current evidence and future directions.

Authors:
Emily Morell Katie Moynihan Joanne Wolfe Elizabeth D Blume

Lancet Child Adolesc Health 2019 07 21;3(7):502-510. Epub 2019 May 21.

Department of Cardiology, Boston Children's Hospital, Boston, MA, USA. Electronic address:

Although outcomes for children with heart disease have improved substantially over the past several decades, heart disease remains one of the leading causes of paediatric mortality. For children who progress to advanced heart disease, disease morbidity is high, with many children requiring multiple surgical interventions and long-term intensive care hospitalisations. Care for children with advanced heart disease requires a multidisciplinary approach, and opportunities for earlier integration of palliative care are being explored. This Viewpoint summarises the relevant literature over the past decade. We also identify gaps in parent and provider understanding of prognosis and communication, propose indications for palliative care consultation in paediatric advanced heart disease, and summarise attitudes and perceived barriers to palliative care consultation. Areas for additional research that we identify include paediatric cardiologist education, parental distress, socioeconomic disparities, and patient-reported outcomes. Interdisciplinary clinical and research efforts are required to further advance the field and improve integration of palliative care in the care of children with heart disease.
View Article and Find Full Text PDF

Download full-text PDF

 Source
http://dx.doi.org/10.1016/S2352-4642(19)30121-XDOI Listing
July 2019