The Quality of Life of Children with Advanced Cancer: The Perspective of Children and Parents
advanced cancer; child; conference abstract; human; interdisciplinary communication; oncology; palliative therapy; physical well-being; pleasure; qualitative research; quality of life assessment; semi structured interview; thematic analysis
Objective: Quality of Life (QoL) is the core of pediatric palliative care (PPC). The evaluation of QoL allows the adjustment of patient care. However, it remains difficult for clinicians to measure it in this population because there is very little empirical data on this topic. In order to identify dimensions of QoL in this context, we have, in a previous study, interviewed professionals who accompanied children with advanced cancer. The results highlighted the traditional dimensions of physical, psychological and social well-being, as well as original dimensions such as pleasure and the present moment. However, to provide an effective understanding of QoL, it is essential to capture the perspective of children and parents. This study aims to describe the QoL in the context of PPC in oncology according to children's and parents' the representations.
Avoine-Blondin J; Fasse L; Lopez C; Daoust L; Humbert N; Duval M; Sultan S
Journal of Pain and Symptom Management
2018
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<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.418" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.10.418</a>
Evaluation of the effect of a comprehensive multidisciplinary care pathway for hip fractures: design of a controlled study.
Humans; Middle Aged; Interdisciplinary Communication; Treatment Outcome; Netherlands; Program Evaluation; Activities of Daily Living; Time Factors; Academic Medical Centers; Hip Fractures/th [Therapy]; Recovery of Function; patient care team; Critical Pathways; Research Design; Hip Fractures/di [Diagnosis]; Hip Fractures/pp [Physiopathology]; Propensity Score
BACKGROUND: Hip fractures constitute an economic burden on healthcare resources. Most persons with a hip fracture undergo surgery. As morbidity and mortality rates are high, perioperative care leaves room for improvement. Improvement can be achieved if it is organized in comprehensive care pathways, but the effectiveness of these pathways is not yet clear. Hence the objective of this study is to compare the clinical effectiveness of a comprehensive care pathway with care as usual on self-reported limitations in Activities of Daily Living., METHODS/DESIGN: A controlled trial will be conducted in which the comprehensive care pathway of University Medical Center Groningen will be compared with care as usual in two other, nonacademic, hospitals. In this trial, propensity scores will be used to adjust for differences at baseline between the intervention and control group. Propensity scores can be used in intervention studies where a classical randomized controlled trial is not feasible. Patients aged 60 years and older will be included. The hypothesis is that 15% more patients at University Medical Center Groningen compared with patients in the care-as-usual condition will have recovered at least as well at 6 months follow-up to pre-fracture levels for Activities of Daily Living., DISCUSSION: This study will yield new knowledge with respect to the clinical effectiveness of a comprehensive care pathway for the treatment of hip fractures. This is relevant because of the growing incidence of hip fractures and the consequent massive burden on the healthcare system. Additionally, this study will contribute to the growing knowledge of the application of propensity scores, a relatively novel statistical technique to simulate a randomized controlled trial in studies where it is not possible or difficult to execute this kind of design., TRIAL REGISTRATION: Nederlands Trial Register NTR3171.
2013
Izaks GJ; Reininga Inge HF; Wendt KW; Stevens M
Bmc Musculoskeletal Disorders
2013
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Journal Article
<a href="http://doi.org/10.1186/1471-2474-14-291" target="_blank" rel="noreferrer">10.1186/1471-2474-14-291</a>
Integrating oncology and palliative home care in Italy: the experience of the "L'Aquila per la Vita" Home Care Unit
adolescent; Child; Delivery of Health Care; Female; Hospitalization; Humans; Male; retrospective studies; Death; Palliative Care; patient care team; Neoplasms; home care services; Adult; Aged; Middle Aged; Interdisciplinary Communication; Length of Stay; Program Evaluation; Italy; Patient Preference; Medical Records; Chi-Square Distribution; Palliative Care; 80 and over; Integrated; Emergencies
AIM: To evaluate the efficacy of a home care program, closely integrated with a medical oncology department. PATIENTS AND METHODS: The charts, prospectively recorded, of all the patients treated at home by the "L'Aquila per la Vita" Home Care Unit from August 2006 to December 2011, were reviewed. The number of patients, home accesses, length of the home care, hospital admission, emergency calls, and the place of death were recorded. Data were analyzed considering the origin of the patients (medical oncology department or other). RESULTS: A total of 461 patients was followed at home for a total of 10,503 home accesses (median accesses/patient, 20; range, 1-159). The median length of home care was 76 days (range, 2-643 days). The median was 101 days for patients coming from the medical oncology department and 53 days for patients coming from other origins (P <0.0005). There were 428 emergency calls (4.1% of all the home accesses). Emergency calls accounted for 253 of 7,364 home accesses (3.4%) among patients coming from the medical oncology department and for 175 of 3,139 home accesses (5.6%) among patients coming from other origins (P = 0.00005). Eighty of 461 patients (17.3%) required one in-hospital admission and 19/461 patients (4.1%) more than one. Fifty-nine of 259 (17.8%) patients coming from the medical oncology department and 40 of 186 (26.9%) coming from other origins required in-hospital admissions (P = 0.04). A total of 311 patients died (163 coming from the medical oncology department and 148 from other origins). Twenty-eight of 163 (17.1%) coming from the medical oncology department and 52 of 148 (35.1%) coming from other origins died in the hospital (P = 0.0002). CONCLUSIONS: A multidisciplinary and expert team, closely integrated with the hospital, can guarantee a long length of home care, avoiding hospitalization and closing the gap between the patients' preferences and the services offered regarding the place of death.
2013-04
Porzio G; Aielli F; Verna L; Martella F; Aloisi P; Ficorella C
Tumori
2013
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Journal Article
<a href="http://doi.org/10.1700/1283.14196" target="_blank" rel="noreferrer">10.1700/1283.14196</a>
Learning that leads to action: impact and characteristics of a professional education approach to improve the care of critically ill children and their families
Child; Humans; United States; Palliative Care; Canada; Education; Professional-Family Relations; Interdisciplinary Communication; Program Evaluation; Curriculum; Quality of Health Care; Patient Advocacy; Models; Continuing/methods; Educational; Pediatrics/education
OBJECTIVE: To determine the impact of an innovative professional educational approach on clinicians' confidence and ability to make institutional improvements in pediatric palliative care. DESIGN: Evaluation to assess impact of educational intervention on participants and participant institutions. SETTING: Retreats lasting 2.5 days. PARTICIPANTS: Physicians, nurses, psychosocial staff, and bereaved parents. INTERVENTION: "Relational learning across boundaries" pedagogy. MAIN OUTCOME MEASURES: Analysis of participant questionnaires (n = 782, response rate of 84%), team leader surveys (n = 72, response rate of 71%), and follow-up interview with subsample (n = 21, response rate of 81%). Outcomes included confidence to act and institutional improvements achieved. RESULTS: Seventy-four percent of team leaders reported significant or moderate improvement in pediatric palliative care after the retreat; only 1% reported no improvement. Ninety-one percent credited the retreat experience as being somewhat or very instrumental to the improvements, which included the establishment of pediatric palliative care and bereavement programs, improvements in interdisciplinary communication, care coordination, clinician-family interaction at the bedside, and educational programs. Participants attributed the impact of the 2.5-day retreat to its key pedagogical features, involvement of family members as equal participants and participation of colleagues from other disciplines and care settings, as well as the ground rules used for the small group seminars. CONCLUSIONS: The intervention was successful in improving clinicians' confidence and catalyzed improvements in pediatric palliative care within participating institutions. Relational learning holds promise for professional learning, especially when the educational goal is tied to enabling a shift in social and ethical norms.
2010
Solomon MZ; Browning DM; Dokken DL; Merriman MP; Rushton CH
Archives Of Pediatrics & Adolescent Medicine
2010
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Journal Article
<a href="http://doi.org/10.1001/archpediatrics.2010.12" target="_blank" rel="noreferrer">10.1001/archpediatrics.2010.12</a>
Pediatric palliative care.
Child; Humans; Professional-Family Relations; Interdisciplinary Communication; Resuscitation Orders; Adaptation; Psychological; patient care team; Psychological; Stress; DNAR; Child welfare; hospice care; Analgesics/tu [Therapeutic Use]; Palliative Care/px [Psychology]; decision making; Pain/dt [Drug Therapy]; Pediatrics/td [Trends]; Quality of Life/px [Psychology]; Analgesics/ae [Adverse Effects]; Constipation/ci [Chemically Induced]; Nausea/ci [Chemically Induced]; Vomiting/ci [Chemically Induced]
Palliative care has always been a part of the care of children. It includes any intervention that focuses on relieving suffering, slowing the progression of disease, and improving quality of life at any stage of disease. In addition, for even the child with the most unpredictable disease, there are predictable times in this child's life when the child, family, and care team will be suffering in ways that can be mitigated by specific interventions. Rather than defining pediatric palliative care in terms of a patient base, severity of disease, or even a general philosophy of care, palliative care can best be understood as a specific set of tasks directed at mitigating suffering. By understanding these tasks; learning to identify predictable times and settings of suffering; and learning to collaborate with multidisciplinary specialists, use communication skills, and identify clinical resources, the pediatrician can more effectively support children with life-threatening illnesses and their families. In this article, we define palliative care as a focus of care integrated in all phases of life and as a set of interventions aimed at easing suffering associated with life-threatening conditions. We detail an approach to these interventions and discuss how they can be implemented by the pediatrician with the support of specialists in hospice and palliative medicine. We discuss common and predictable times of suffering when these interventions become effective ways to treat suffering and improve quality of life. Finally, we discuss those situations that pediatricians most commonly and intensely interface with palliative care-the care of the child with complex, chronic conditions and severe neurologic impairment (SNI).Copyright 2010 Mosby, Inc. All rights reserved.
2010
Klick JC; Hauer JM
Current Problems In Pediatric And Adolescent Health Care
2010
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Journal Article
<a href="http://doi.org/10.1016/j.cppeds.2010.05.001" target="_blank" rel="noreferrer">10.1016/j.cppeds.2010.05.001</a>
Psychosocial and spiritual needs of children living with a life-limiting illness
Child; Humans; Health Services Needs and Demand; Interdisciplinary Communication; Expressed Emotion; Activities of Daily Living; Spirituality; Sibling Relations; Psychology; patient care team; Chronic disease; social support; Palliative Care/methods; Pain/psychology/therapy
Quality end-of-life care includes the management of distressing symptoms; provisions of care, including the assessment and management of psychosocial and spiritual needs; and respite from diagnosis through death and bereavement. Meeting the palliative care goal of improved quality of life depends on medical and nursing practitioners understatnding and effectively assessing psychosocial symptoms.
2007
McSherry M; Kehoe K; Carroll JM; Kang T; Rourke MT
Pediatric Clinics Of North America
2007
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Journal Article
<a href="http://doi.org/10.1016/j.pcl.2007.08.002" target="_blank" rel="noreferrer">10.1016/j.pcl.2007.08.002</a>
ABRV (or Abbrevobabble Revisited)
Interdisciplinary Communication; Language; Research/standards; Biomedical Research/standards; Peer Review; Abbreviations as Topic; Periodicals as Topic/standards
Brumback RA
Journal Of Child Neurology
2009
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Journal Article
<a href="http://doi.org/10.1177/0883073809340922" target="_blank" rel="noreferrer">10.1177/0883073809340922</a>
Models of comprehensive multidisciplinary care for individuals in the United States with genetic disorders
Humans; Interdisciplinary Communication; Models; Adolescent Transitions; United States/epidemiology; Genetic; Genetic Diseases; Comprehensive Health Care/methods; Inborn/diagnosis/epidemiology/therapy
Approaches to providing comprehensive coordinated care for individuals with complex diseases include the medical home approach, the chronic care model in primary care, and disease-specific, multidisciplinary specialty clinics. There is uneven availability and utilization of multidisciplinary specialty clinics for different genetic diseases. For 2 disorders (ie, hemophilia and cystic fibrosis), effective national networks of specialty clinics exist and reach large proportions of the target populations. For other disorders, notably, sickle cell disease, fewer such centers are available, centers are less likely to be networked, and centers are used less widely. Models of comanagement are essential for promoting ongoing communication and coordination between primary care and subspecialty services, particularly during the transition from pediatric care to adult care. Evaluation of the effectiveness of different models in improving outcomes for individuals with genetic diseases is essential.
2009
Grosse SD; Schechter MS; Kulkarni R; Lloyd-Puryear MA; Strickland B; Trevathan E
Pediatrics
2009
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Journal Article
<a href="http://doi.org/10.1542/peds.2007-2875" target="_blank" rel="noreferrer">10.1542/peds.2007-2875</a>
Setting an agenda for social work in end-of-life and palliative care: an overview of leadership and organizational initiatives
Humans; Leadership; Cooperative Behavior; Interdisciplinary Communication; Organizational Innovation; Palliative Care/organization & administration; Terminal Care/organization & administration; Social Work/organization & administration
This article describes leadership efforts within social work to promote, enhance, and shape the future of social work practice, education, and research in end-of-life and palliative care. The background and outcomes of the Project on Death in America, Open Society Institute's Social Work Leadership Development Award Program, and the 2002 Social Work Leadership Summit on End-of-Life and Palliative Care are reviewed.
2005
Christ GH; Blacker S
Journal of Social Work in End-of-Life & Palliative Care
2005
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Journal Article
<a href="http://doi.org/10.1300/j457v01n01_02" target="_blank" rel="noreferrer">10.1300/j457v01n01_02</a>
Social work competencies in palliative and end-of-life care
Humans; Interdisciplinary Communication; Attitude; Clinical Competence; Information Dissemination; Social Work; Practice; Attitudes; Health Knowledge; Palliative Care/standards; Terminal Care/standards; Educational Measurement/standards; Patient Care Planning/standards
Social workers from clinical, academic, and research settings met in 2002 for a national Social Work Leadership Summit on Palliative and End-of-Life Care. Participants placed the highest priority on the development and broad dissemination of a summary document of the state-of-the-art practice of social work in palliative and end-of-life care. Nine Summit participants reviewed the literature and constructed this detailed description of the knowledge, skills, and values that are requisite for the unique, essential, and appropriate role of social work. This comprehensive statement delineates individual, family, group, team, community, and organizational interventions that extend across settings, cultures, and populations and encompasses advocacy, education, training, clinical practice, community organization, administration, supervision, policy, and research. This document is intended to guide preparation and credentialing of professional social workers, to assist interdisciplinary colleagues in their collaboration with social workers, and to provide the background for the testing of quality indicators and "best practice" social work interventions.
2005
Gwyther LP; Altilio T; Blacker S; Christ G; Csikai EL; Hooyman N; Kramer B; Linton J; Raymer M; Howe J
Journal of Social Work in End-of-Life & Palliative Care
2005
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Journal Article
<a href="http://doi.org/10.1300/j457v01n01_06" target="_blank" rel="noreferrer">10.1300/j457v01n01_06</a>
Social work and end-of-life care: reviewing the past and moving forward
Humans; Health Services Accessibility; Interdisciplinary Communication; Clinical Competence; Altruism; Practice; Attitudes; Health Knowledge; Terminal Care/organization & administration; Social Work/education/organization & administration
This paper reviews the professional literature with respect to the social work profession's involvement in end-of-life care. The search process was conducted by entering key words in various combinations to electronic databases. Eligible articles were required to address one of the following: roles and activities of social workers in providing end-of-life care; core principles valued by social workers in the provision of end-of-life care; and barriers to provision of effective end-of-life care. The literature from 1990 through July 2004 was searched most rigorously. Based on this review, suggestions for where the profession of social work should focus its energies are offered. These key areas include focusing on generating empirically-based knowledge for practice and policy analysis and developing a system of social work education that addresses the unique knowledge and skills needed to participate in end-of-life practice as competent and informed professional practitioners. Current initiatives with regard to critical areas are summarized.
2005
Brandsen CK
Journal of Social Work in End-of-Life & Palliative Care
2005
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Journal Article
<a href="http://doi.org/10.1300/j457v01n02_05" target="_blank" rel="noreferrer">10.1300/j457v01n02_05</a>
Pediatric palliative and end-of-life care: the role of social work in pediatric oncology
Humans; Pediatrics; Professional Role; Interdisciplinary Communication; Communication; Medical Oncology; Palliative Care/organization & administration; Family/psychology; Pain/drug therapy; Terminal Care/organization & administration; Patient Care Team/organization & administration; Social Work/organization & administration
Pediatric oncology social workers are often engaged in the psychosocial care of dying children and their families. Despite their participation on the interdisciplinary team, the role for social work in pediatric palliative and end-of-life care has not been clearly defined. This survey of 131 pediatric oncology social workers identified current and best social work practices for care of children and their families at the end of life. Implications for practice, education, and research are discussed.
2005
Jones BL
Journal of Social Work in End-of-Life & Palliative Care
2005
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Journal Article
<a href="http://doi.org/10.1300/j457v01n04_04" target="_blank" rel="noreferrer">10.1300/j457v01n04_04</a>
Health care transition: youth, family, and provider perspectives
Female; Humans; Male; Physician-Patient Relations; Family; Adult; Attitude to Health; Attitude of Health Personnel; Interdisciplinary Communication; Disabled Persons; Health Services Research; Focus Groups; Continuity of Patient Care; Patient Care Planning; Family Practice; adolescent; Adolescent Transitions; Health; Insurance; Chronic Disease/therapy; Adolescent Health Services/organization & administration; Delivery of Health Care/organization & administration; Pediatrics/organization & administration; Adolescent Medicine/organization & administration; CHIR Best Practices; Insurance Coverage
OBJECTIVE: This study examined the process of health care transition (HCT) posing the following questions: What are the transition experiences of youths and young adults with disabilities and special health care needs, family members, and health care providers? What are promising practices that facilitate successful HCT? What are obstacles that inhibit HCT? METHODS: A qualitative approach was used to investigate these questions. Focus group interviews were conducted. Content and narrative analyses of interview transcripts were completed using ATLAS.ti. RESULTS: Thirty-four focus groups and interviews were conducted with 143 young adults with disabilities and special health care needs, family members, and health care providers. Content analysis yielded 3 content domains: transition services, which presents a chronological understanding of the transition process; health care systems, which presents differences between pediatric and adult-oriented medicine and how these differences inhibit transition; and transition narratives, which discusses transition experience in the broader context of relationships between patients and health care providers. CONCLUSION: This study demonstrated the presence of important reciprocal relationships that are based on mutual trust between providers and families and are developed as part of the care of chronically ill children. Evidence supports the need for appropriate termination of pediatric relationships as part of the transition process. Evidence further supports the idea that pediatric and adult-oriented medicines represent 2 different medical subcultures. Young adults' and family members' lack of preparation for successful participation in the adult health care system contributes to problems with HCT.
2005
Reiss JG; Gibson RW; Walker LR
Pediatrics
2005
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Journal Article
<a href="http://doi.org/10.1542/peds.2004-1321" target="_blank" rel="noreferrer">10.1542/peds.2004-1321</a>
Utilization review of hospice: an interdisciplinary team approach
Interdisciplinary Communication; Interprofessional Relations; Hospices; Utilization Review; patient care team; Nursing; Progressive Patient Care; Team
1991
Gill MA
American Journal Of Hospice & Palliative Medicine
1991
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Journal Article
<a href="http://doi.org/10.1177/104990919100800104" target="_blank" rel="noreferrer">10.1177/104990919100800104</a>
Palliative medicine consultation for preparedness planning in patients receiving left ventricular assist devices as destination therapy.
Female; Humans; Male; Family; Withholding Treatment; Aged; Middle Aged; Interdisciplinary Communication; Severity of Illness Index; patient care team; decision making; retrospective studies; advance care planning; DNAR; quality of life; DNAR Outcomes; referral and consultation; Advance Directives; Palliative Care/mt [Methods]; Heart Failure/th [Therapy]; Heart-Assist Devices; Left/th [Therapy]; Right/th [Therapy]; Ventricular Dysfunction
OBJECTIVE: To assess the benefit of proactive palliative medicine consultation for delineation of goals of care and quality-of-life preferences before implantation of left ventricular assist devices as destination therapy (DT)., PATIENTS AND METHODS: We retrospectively reviewed the cases of patients who received DT between January 15, 2009, and January 1, 2010., RESULTS: Of 19 patients identified, 13 (68%) received proactive palliative medicine consultation. Median time of palliative medicine consultation was 1 day before DT implantation (range, 5 days before to 16 days after). Thirteen patients (68%) completed advance directives. The DT implantation team and families reported that preimplantation discussions and goals of care planning made postoperative care more clear and that adverse events were handled more effectively. Currently, palliative medicine involvement in patients receiving DT is viewed as routine by cardiac care specialists., CONCLUSION: Proactive palliative medicine consultation for patients being considered for or being treated with DT improves advance care planning and thus contributes to better overall care of these patients. Our experience highlights focused advance care planning, thorough exploration of goals of care, and expert symptom management and end-of-life care when appropriate.
Swetz K M; Freeman MR; AbouEzzeddine OF; Carter Kari A; Boilson BA; Ottenberg AL; Park Soon J; Mueller PS
Mayo Clinic Proceedings
2011
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Journal Article
<a href="http://doi.org/10.4065/mcp.2010.0747" target="_blank" rel="noreferrer">10.4065/mcp.2010.0747</a>
Single-center Experience Providing Palliative Care To Pediatric Patients With End-stage Renal Disease
End Stage Renal Disease; Palliative Therapy; Article; Child; Clinical Article; Consultation; Emotional Stress; Female; Human; Interdisciplinary Communication; Male; Medical Record Review; Parent; Social Support
Background: End-stage renal disease (ESRD) affects nearly 1400 new children each year in the United States. Morbidity and mortality rates remain high for pediatric patients with ESRD, including those that have received a renal transplant. Objective: To better understand ESRD patients referred to palliative care, including their physical symptoms, topics discussed, and themes emerging during initial palliative care consultation. Design/Subjects: This study is a retrospective chart review of pediatric ESRD patients who received a palliative care consult. Physical symptoms, core topics, and themes were identified by the interprofessional study team. Results: The study team found 35 patients met inclusion criteria during the study period. The most common standard palliative care metric noted was "complex or time-intensive communication and interdisciplinary social support." Pain was the most common physical symptom addressed with goals of care and communication the most common topics discussed. Themes emerging described the emotional distress of patients and parents as well as prognostic discussions. Conclusions: This study demonstrates one institution's experience with pediatric ESRD patients undergoing consultation with the pediatric palliative care service. More research is necessary in this population to better describe the best focus for palliative care teams.
Keefer P; Lehmann K; Shanley M; Woloszyk T; Khang E; Luckritz K; Saul D
Journal Of Palliative Medicine
2017
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10.1089/jpm.2016.0353