Family experience in a regional participant contact registry for research on intellectual disability
Participant recruitment is one of the most significant challenges in research on intellectual disability (ID). One potential solution is to develop a participant contact registry, which allows the researcher to contact participants directly rather than recruiting through multiple schools or service agencies. The authors describe the development of one such registry and results of a survey of registry families. Results suggest that families joined the registry to help others, they hope research in the ID field improves the daily lives of individuals with ID and their families, and they find research participation to be a positive experience. However, logistic concerns can be an important barrier to their research participation, and they would like more information about the research study both before and after participating.
Conners FA; Phillips BA; Rhodes JD; Hamilton JC
Intellectual and Developmental Disabilities
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1352/1934-9556-52.2.112" target="_blank" rel="noreferrer noopener">10.1352/1934-9556-52.2.112</a>
Ethical challenges for a new generation of early-phase pediatric gene therapy trials
pediatrics; ethics; human; review; clinical trial (topic); patient selection; patient engagement; risk benefit analysis; gene therapy; giant axonal neuropathy
After decades of setbacks, gene therapy (GT) is experiencing major breakthroughs. Five GTs have received US regulatory approval since 2017, and over 900 others are currently in development. Many of these GTs target rare pediatric diseases that are severely life-limiting, given a lack of effective treatments. As these GTs enter early-phase clinical trials, specific ethical challenges remain unresolved in three domains: evaluating risks and potential benefits, selecting participants fairly, and engaging with patient communities. Drawing on our experience as clinical investigators, basic scientists, and bioethicists involved in a first-in-human GT trial for an ultrarare pediatric disease, we analyze these ethical challenges and offer points to consider for future GT trials. Copyright © 2021, This is a U.S. government work and not under copyright protection in the U.S.; foreign copyright protection may apply.
Iyer AA; Saade D; Bharucha-Goebel D; Foley AR; Averion GM; Paredes E; Gray S; Bonnemann CG; Grady C; Hendriks S; Rid A
Genetics in Medicine
2021
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<a href="http://doi.org/10.1038/s41436-021-01245-3" target="_blank" rel="noreferrer noopener">10.1038/s41436-021-01245-3</a>
Beyond the Burke-Fahn-Marsden Dystonia Rating Scale: Deep brain stimulation in childhood secondary dystonia
children; Pediatrics; Goals; Disability; reliability; Outcomes; patient selection; validity; Neurosciences & Neurology; cerebral-palsy; follow-up; rehabilitation; globus-pallidus internus; primary generalized dystonia; (DBS); Childhood dystonia; Paediatric deep brain stimulation; pediatric movement-disorders; Secondary dystonia; tone and motor problems; Glutaric acidemia type I; surgical intervention; Deep brain stimulation; BFMDRS
Purpose: Deep brain stimulation is now widely accepted as an effective treatment for children with primary generalized dystonia. More variable results are reported in secondary dystonias and its efficacy in this heterogeneous group has not been fully elucidated. Deep brain stimulation outcomes are typically reported using impairment-focused measures, such as the Burke-Fahn-Marsden Dystonia Rating Scale, which provide little information about function and participation outcomes or changes in non-motor areas. The aim is to demonstrate that in some cases of secondary dystonia, the sole use of impairment level measures, such as the Burke-Fahn-Marsden Dystonia Rating Scale, may be insufficient to fully evaluate outcome following deep brain stimulation. Methods: Six paediatric cases who underwent deep brain stimulation surgery with a minimum of one year follow up were selected on the basis of apparent non-response to deep brain stimulation, defined as a clinically insignificant change in the Burke-Fahn-Marsden Dystonia Movement Scale (<20%), but where other evaluation measures demonstrated clinical efficacy across several domains. Results: Despite no significant change in Burke-Fahn-Marsden Dystonia Rating Scale scores following deep brain stimulation, parallel outcome measures demonstrated significant benefit in a range of child and family-centred goal areas including: pain and comfort, school attendance, seating tolerance, access to assistive technology and in some cases carer burden. Conclusions: Sole use of impairment-focused measures, are limited in scope to evaluate outcome following deep brain stimulation, particularly in secondary dystonias. Systematic study of effects across multiple dimensions of disability is needed to determine what deep brain stimulation offers patients in terms of function, participation, care, comfort and quality of life. Deep brain stimulation may offer meaningful change across multiple domains of functioning, disability and health even in the absence of significant change in dystonia rating scales. (c) 2012 European Paediatric Neurology Society. Published by Elsevier Ltd. All rights reserved.
Gimeno H; Tustin K; Selway R; Lin J P
European Journal of Paediatric Neurology
2012
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<a href="http://doi.org/10.1016/j.ejpn.2011.12.014" target="_blank" rel="noreferrer noopener">10.1016/j.ejpn.2011.12.014</a>
Mitochondrial disease: needs and problems of children, their parents and family. A systematic review and pilot study into the need for information of parents during the diagnostic phase.
Child; Humans; Adult; Parent-Child Relations; Interviews as Topic; Questionnaires; Pilot Projects; Research Design; Longitudinal Studies; Patient Selection; Reproducibility of Results; Mitochondrial Diseases/diagnosis/psychology; Parents/education
OBJECTIVE: Firstly, this paper aims to systematically review the mitochondrial disease literature to identify studies assessing the needs and problems in the daily life of children with a mitochondrial disease and of their parents and family. The second aim is to provide more insight into the need for information by the parents of these children during the diagnostic process while in hospital. DESIGN: A systematic review and a pilot study, using a qualitative (focus group interviews; n = 7) and a quantitative (questionnaire; n = 37) design. RESULTS: Mothers reported great socioeconomic and psychoaffective strain and showed psychopathological symptoms in the two studies published with respect to this topic. The pilot study showed that parents considered an honest and interested attitude of the person who is giving the information as most important. Furthermore they wanted oral and written information and a central point where they could go with their questions at any time they felt the need. The need for information increased during the four phases of the diagnostic process and was highest in the fourth phase. CONCLUSIONS: The few studies found in the review, combined with expectations that having a mitochondrial disease must have a great impact on these children and their parents and family, call for more research in their needs and problems. Furthermore, there are gaps in the current information provision to parents of these children. A better understanding of the needs and problems of these children and their family is essential for effective care planning and might result in an improved quality of life.
2007
Noorda G; Hermans-Peters M; Smeitink JA; van Achterberg T; Kemps H; Goverde W; Schoonhoven L
Journal Of Inherited Metabolic Disease
2007
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Journal Article
<a href="http://doi.org/10.1007/s10545-007-0426-0" target="_blank" rel="noreferrer">10.1007/s10545-007-0426-0</a>
Harnessing social networks along with consumer-driven electronic communication technologies to identify and engage members of 'hard-to-reach' populations: a methodological case report
Humans; Patient Selection; Sampling Studies; Animals; Cultural; Online Systems; Dogs; Anthropology; Cats; Diabetes Mellitus/veterinary; Electronic Mail
BACKGROUND: Sampling in the absence of accurate or comprehensive information routinely poses logistical, ethical, and resource allocation challenges in social science, clinical, epidemiological, health service and population health research. These challenges are compounded if few members of a target population know each other or regularly interact. This paper reports on the sampling methods adopted in ethnographic case study research with a 'hard-to-reach' population. METHODS: To identify and engage a small yet diverse sample of people who met an unusual set of criteria (i.e., pet owners who had been treating cats or dogs for diabetes), four sampling strategies were used. First, copies of a recruitment letter were posted in pet-friendly places. Second, information about the study was diffused throughout the study period via word of mouth. Third, the lead investigator personally sent the recruitment letter via email to a pet owner, who then circulated the information to others, and so on. Fourth, veterinarians were enlisted to refer people who had diabetic pets. The second, third and fourth strategies rely on social networks and represent forms of chain referral sampling. RESULTS: Chain referral sampling via email proved to be the most efficient and effective, yielding a small yet diverse group of respondents within one month, and at negligible cost. CONCLUSIONS: The widespread popularity of electronic communication technologies offers new methodological opportunities for researchers seeking to recruit from hard-to-reach populations.
2010
Rock MJ
Bmc Medical Research Methodology
2010
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Journal Article
<a href="http://doi.org/10.1186/1471-2288-10-8" target="_blank" rel="noreferrer">10.1186/1471-2288-10-8</a>
‘Do Not Attempt Resuscitation’ – Do Standardised Order Forms make a clinical difference above hand-written note entries?
Advance Directives; cardiopulmonary resuscitation; DNAR; DNAR Outcomes; Patient Selection; Routine data
SummaryAim To quantify any effect of Standardised Order Forms (SOFs), versus hand-written note entries for ‘Do Not Attempt Resuscitation’ – on the selection and survival of remaining cardiopulmonary resuscitation (CPR) attempts. Methods A prospective, observational study in two UK Hospitals, comparing numbers, demographics and survival rates from CPR attempts for 2 years prior to and 2 years after the introduction of SOFs (the only change in DNAR policy). Results There were 133 CPR attempts, representing 0.30% of the 44,792 admissions, pre SOFs and 147 CPR attempts representing 0.32% of the 45,340 admissions following the SOFs (p = 0.46). The median duration of a CPR attempt was 11 min prior to and 15 min following the SOFs (p = 0.02). Of the CPR attempts, there was no change in mean age (p = 0.34), proportions occurring outside working hours (p = 0.70) or proportions presenting with an initial shockable rhythm (p = 0.30). Survival to discharge following CPR was unchanged (p = 0.23). Conclusions The introduction of SOFs for DNAR orders was associated with a significantly longer duration of CPR (on average by 3–4 min) but no difference in overall number, demographics or type of arrest or survival in the remaining CPR attempts.
2009-01
Lewis KE; Edwards VM; Hall S; Temblett P; Hutchings H
Resuscitation
2009
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Journal Article
<a href="http://doi.org/10.1016/j.resuscitation.2008.08.009" target="_blank" rel="noreferrer">10.1016/j.resuscitation.2008.08.009</a>
Recruitment and retention in a longitudinal palliative care study.
Female; Humans; Male; Palliative Care; Adult; Data Collection; Middle Aged; Focus Groups; Longitudinal Studies; Patient Selection; Feasibility Studies; patient care team; caregivers; Neoplasms/therapy; Acquired Immunodeficiency Syndrome/therapy; Clinical Nursing Research/organization & administration; Patient Dropouts
A longitudinal feasibility study regarding quality of life and interventions for patients with advanced cancer or AIDS and their family caregivers was conducted to determine issues related to their recruitment and retention and to obtain pilot data relevant to the development of a larger study. At the completion of the study, a focus group consisting of the members of the palliative care research team was convened to identify barriers to and facilitators of the research process based on their research experience. The purpose of this article is to (1) describe recruitment, mortality rates, attrition rates, and compliance with data collection of patients and family caregivers experiencing an advanced illness and to (2) examine the researchers' perspectives regarding barriers to and facilitators of the research process that relate to patients and family caregivers, institutions, the data collection process, and their personal experiences. Implications for palliative care research are discussed.
2005
Sherman DW; McSherry CB; Parkas V; et al
Applied Nursing Research
2005
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Journal Article
<a href="http://doi.org/10.1016/j.apnr.2005.04.003" target="_blank" rel="noreferrer">10.1016/j.apnr.2005.04.003</a>
Parental decision making in pediatric cancer end-of-life care: Using focus group methodology as a prephase to seek participant design input
Child; Humans; Terminal Care; Attitude to Health; Questionnaires; Professional-Family Relations; Patient-Centered Care; Qualitative Research; Nurse's Role; Pediatric Nursing; Program Development; Needs Assessment; Patient Selection; Helping Behavior; Adaptation; Psychological; PedPal Lit; decision making; Parents/psychology; Neoplasms; social support; Quality of Life/psychology; Focus Groups/methods; Focus Groups/utilization; Morale; Nursing Methodology; Oncologic Nursing
The ultimate aim of our research program is to provide strategies that facilitate parental decision-making for parents of children with cancer receiving end-of-life care. As a first step to develop this program, we needed insight into parents' reactions and opinions about the research methods planned for a larger study. In particular, we needed their opinions about the general experience of making the decision between palliative cytotoxic chemotherapy and supportive care alone and the factors that parents regard as important when making this decision. In addition, we wished to know whether the methodology proposed for the future study was easy to understand and whether it might cause unnecessary emotional trauma. Finally, we asked their opinions regarding the appropriate target sample of parents to include in the future study. Qualitative data about these issues were collected using focus group methodology involving seven participants. The comments made during the focus group discussions were content-analyzed for common themes. The results from the focus group discussion led to particular modifications in the proposed design and interview strategies planned for the future larger study. We found it was extremely beneficial to include a focus group pre-phase in a study that will interview parents in a high sensitivity area.
2006
Tomlinson D; Capra M; Gammon J; Volpe J; Barrera M; Hinds PS; Bouffet E; Geenberg ML; Baruchel S; Llewellyn-Thomas HA; Sung L
European Journal Of Oncology Nursing
2006
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Journal Article
<a href="http://doi.org/10.1016/j.ejon.2005.11.003" target="_blank" rel="noreferrer">10.1016/j.ejon.2005.11.003</a>
Parenteral nutrition in advanced cancer: indications and clinical practice guidelines
Female; Humans; Male; Palliative Care; Aged; Middle Aged; Patient Selection; Parenteral Nutrition; Practice Guidelines; IM; Cachexia/et [Etiology]; Cachexia/th [Therapy]; Gastric Outlet Obstruction/co [Complications]; Intestinal Fistula/co [Complications]; Neoplasms/co [Complications]; Neoplasms/th [Therapy]
Cachexia is a disturbing and disfiguring aspect of many advanced cancers. Parenteral nutrition (PN) is a controversial and expensive treatment for cancer cachexia. Guidelines for the use of PN for these patients have been suggested. These two case reports will highlight some of the issues around the etiology of cancer cachexia, the clinical dilemmas and the use of clinical practice guidelines. [References: 23]
2005
Mirhosseini N; Fainsinger RL; Baracos V
Journal Of Palliative Medicine
2005
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Journal Article
<a href="http://doi.org/10.1089/jpm.2005.8.914" target="_blank" rel="noreferrer">10.1089/jpm.2005.8.914</a>
Enteral and parenteral nutrition in terminally ill cancer patients: a review of the literature
Humans; Survival Rate; Terminally Ill; Practice Guidelines as Topic; Communication; Treatment Outcome; Decision Support Techniques; Research Design; Risk Factors; Patient Selection; Activities of Daily Living; Evidence-Based Medicine; Patient Education as Topic; quality of life; Nutritional Status; Nutrition Assessment; Enteral Nutrition/adverse effects/methods/utilization; Malnutrition/etiology/therapy; Neoplasms/complications/mortality/psychology; Parenteral Nutrition/adverse effects/methods/utilization; Terminal Care/methods/psychology/utilization
Many terminally ill patients who are able to eat appear to be eating less than they should, losing weight, and becoming malnourished, and many others develop difficulties with eating. These symptoms and signs are usually a marker of advanced cancer, rather than the cause of decreasing functional status, and providing supplemental nutrition rarely changes the course of the disease. This article reviews evidence on issues relevant to enteral and parenteral nutrition in patients with advanced cancer, including benefits, risks, and discomforts; how these types of nutrition are used and perceived, and how decisions are made; and how decision-making might be improved.
2006
Dy SM
The American Journal Of Hospice & Palliative Care
2006
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Journal Article
<a href="http://doi.org/10.1177/1049909106292167" target="_blank" rel="noreferrer">10.1177/1049909106292167</a>
The reactions to research participation questionnaires for children and for parents (RRPQ-C and RRPQ-P)
Child; Female; Humans; Male; Adult; Parents; Pilot Projects; Attitude; Patient Participation; Risk Assessment; Research; Wounds and Injuries; Statistical; Stress Disorders; Acute; Factor Analysis; Traumatic; Surveys and Questionnaires; Patient Selection
Systematic assessment of the effect of clinical research studies on child and parent participants has been limited. Such assessment could provide an empirical basis for the ethical conduct of research, assisting investigators and institutional review boards in balancing the need for sound research with the need to protect study participants. The Reactions to Research Participation Questionnaire for Children (RRPQ-C) and the RRPQ for Parents (RRPQ-P) are brief measures designed to assess child or parent views of clinical research studies. Both measures were piloted and then administered as part of an interview-based study of traumatically injured children and their parents, to assess their psychometric properties and potential usefulness as addenda to future study protocols. The RRPQ-C and RRPQ-P each demonstrated acceptable internal consistency. Exploratory factor analyses provided general support for their conceptual basis. Both were easily administered and well-accepted by respondents. There is evidence that children and adults were willing to answer honestly, even about negative responses. Brief measures such as the RRPQ-C and RRPQ-P may provide a practical and empirically informed method for assessing children's and parents' responses to research participation. Investigators should consider including systematic standardized assessment of participant reactions in child clinical research studies.
2002-10
Kassam-Adams N; Newman E
General Hospital Psychiatry
2002
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Journal Article
<a href="http://doi.org/10.1016/s0163-8343(02)00200-1" target="_blank" rel="noreferrer">10.1016/s0163-8343(02)00200-1</a>
The use of methadone for cancer pain
Child; Humans; Analgesics; Attitude of Health Personnel; Treatment Outcome; Information Dissemination; Patient Selection; Drug Interactions; Clinical Protocols; Drug Administration Schedule; Practice; Attitudes; Health Knowledge; Palliative Care/methods; Dose-Response Relationship; Drug; Neoplasms/complications; Pain/diagnosis/drug therapy/etiology; Biological Availability; Drug Costs; Drug Industry/economics; Drug Information Services; Metabolic Clearance Rate; Methadone/chemistry/economics/pharmacology/therapeutic use; Morphine/pharmacology/therapeutic use; Opioid/chemistry/economics/pharmacology/therapeutic use
Methadone is not a new analgesic drug [69]. Several studies have demonstrated that methadone is a valid alternative to morphine, hydromorphone, and fentanyl for the treatment of cancer-related pain, and extensive reviews on the subject have been published in recent years [10,23,25,64,70,71]. Most people involved in pain therapy, however, are not well informed about the properties of methadone. The authors believe that the low cost of methadone paradoxically contributes to the limited knowledge of its characteristics and to the restricted therapeutic use of this drug. The low cost of methadone means there is little financial incentive for pharmaceutical companies to invest in research or to disseminate scientific information. Unfortunately, the lack of scientific information from pharmaceutical companies frequently results in a lack of knowledge on the part of physicians. Unless the existing approach changes, both culturally and politically, ignorance about methadone will persist among medical experts. The low cost of methadone, rather than being an advantage, will result in the limited exploitation of an effective drug.
2002
Ripamonti C; Bianchi M
Hematology/oncology Clinics Of North America
2002
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Journal Article
<a href="http://doi.org/10.1016/s0889-8588(02)00017-5" target="_blank" rel="noreferrer">10.1016/s0889-8588(02)00017-5</a>
Trying trials
Humans; Palliative Care; Research Design; Patient Selection; Hospices; Randomized Controlled Trials
2004
Storey CP
Journal Of Palliative Medicine
2004
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Journal Article
<a href="http://doi.org/10.1089/1096621041349455" target="_blank" rel="noreferrer">10.1089/1096621041349455</a>
Recruiting for research in hospice: feasibility of a research screening protocol
Cross-Sectional Studies; Female; Humans; Male; Palliative Care; Adult; Attitude to Health; Eligibility Determination; Aged; Middle Aged; Patient Selection; Feasibility Studies; adolescent; 80 and over; Multi-site Ethics; Research Subjects/psychology; Hospice Care/utilization; Community Health Services/utilization; Health Services Research/methods
BACKGROUND: The growth of palliative care research has been limited by challenges of slow recruitment and underenrollment. One potential solution to this problem is the use of screening questions embedded in clinical data collection, which identify patients who are interested in participating in research and who can then be approached directly. The goal of this study was to evaluate the feasibility of this strategy for identifying hospice patients who are interested in research participation. DESIGN: Cross-sectional survey. SETTING/ SUBJECTS: Patients and their families who had enrolled in one of two community-based hospice programs. MEASUREMENTS: Three screening questions (for survey-based research, clinical trials and family- focused research) were integrated into the intake process of two community-based hospice organizations. RESULTS: Of the 214 patients who were able to respond, 54% indicated willingness to be approached about survey-based research, 40% were willing to be approached for clinical trials and 65% were willing to be approached for family-focused research. CONCLUSIONS: These results suggest that screening questions may be useful in identifying hospice patients who are willing to be recruited for research. Further study is needed to define the likelihood that these patients will consent and whether these screening questions introduce selection bias in the recruitment process.
2004
Casarett D; Kassner CT; Kutner JS
Journal Of Palliative Medicine
2004
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Journal Article
<a href="http://doi.org/10.1089/jpm.2004.7.854" target="_blank" rel="noreferrer">10.1089/jpm.2004.7.854</a>
Initial experiences with medicinal extracts of cannabis for chronic pain: results from 34 'N of 1' studies
Female; Humans; Male; Adult; Analgesics; Aged; Middle Aged; Treatment Outcome; Patient Selection; Double-Blind Method; Cross-Over Studies; Chronic disease; Administration; Pain/drug therapy; Drug Combinations; Sleep/drug effects; Pain Measurement/methods; Sublingual; Cannabidiol/adverse effects/therapeutic use; Depressive Disorder/drug therapy; Multiple Sclerosis/drug therapy; Non-Narcotic/adverse effects/therapeutic use; Tetrahydrocannabinol/adverse effects/therapeutic use
Three Cannabis Based Medicinal Extracts (CBMEs) for sublingual use became available in 2000. A total of 34 'N of 1' studies were undertaken using this novel therapy for patients with chronic, mainly neuropathic, pain and associated symptoms to explore efficacy, tolerability, safety and dosages. Three CBMEs (Delta9 Tetrahydrocannabinol (THC), Cannabidiol (CBD) and a 1:1 mixture of them both) were given over a 12-week period. After an initial open-label period, the CBMEs were used in a randomised, double-blind, placebo controlled, crossover trial. Extracts which contained THC proved most effective in symptom control. Regimens for the use of the sublingual spray emerged and a wide range of dosing requirements was observed. Side-effects were common, reflecting a learning curve for both patient and study team. These were generally acceptable and little different to those seen when other psycho-active agents are used for chronic pain. These initial experiences with CBME open the way to more detailed and extensive studies.
2004
Notcutt W; Price M; Miller R; Newport S; Phillips C; Simmons S; Sansom C
Anaesthesia
2004
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Journal Article
<a href="http://doi.org/10.1111/j.1365-2044.2004.03674.x" target="_blank" rel="noreferrer">10.1111/j.1365-2044.2004.03674.x</a>
Withholding nutrition from seriously ill newborn infants: a parent's perspective
Humans; infant; Male; Adult; Parents; Withholding Treatment; Euthanasia; Age Factors; Patient Selection; Morals; Enteral Nutrition; Death and Euthanasia; Newborn; Euthanasia; Brain Diseases; Diseases; Jurisprudence; Passive
1988
Miraie ED
The Journal Of Pediatrics
1988
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Journal Article
<a href="http://doi.org/10.1016/s0022-3476(88)80262-2" target="_blank" rel="noreferrer">10.1016/s0022-3476(88)80262-2</a>
Limitations and withdrawals of medical intervention in pediatric critical care
Child; Female; Humans; Male; Survival Rate; United States; Intensive Care Units; Withholding Treatment; Hospital Mortality; Resuscitation Orders; Patient Selection; Analysis of Variance; Outcome and Process Assessment (Health Care); Preschool; Empirical Approach; Death and Euthanasia; infant; ICU Decision Making; Intervention; Interventions; Life Support Care/utilization; Pediatric/standards/statistics & numerical data
OBJECTIVE--To investigate the use and implementation in pediatric intensive care units (PICUs) of three levels of restriction of medical intervention: do not resuscitate (DNR), additional limitations of medical interventions beyond DNR, and withdrawal of care. DESIGN--Consecutive patients admitted between December 1989 and January 1992. SETTING--A total of 16 PICUs randomly selected to represent variability in size, teaching status, and presence or absence of a pediatric intensivist and unit coordination. MAIN OUTCOME MEASURES--Profiles of children undergoing restrictions of medical interventions including the influence of chronic disease, the justifications for restrictions, and description of implementation practices. PATIENTS--All pediatric admissions undergoing restrictions (n = 119) drawn from 5415 consecutive PICU admissions. RESULTS--A total of 94 (79%) of the restriction patients died during the PICU course, representing 38% of all deaths. A total of 73 restrictions (61%) resulted from acute disease, most involving the central nervous system or respiratory system. Restrictions were evenly divided between DNR (39%), additional limitations of medical intervention beyond DNR (27%), and withdrawals of medical intervention (34%). Survival decreased with increasing levels of restriction from 35% of DNR patients to 9% of patients with additional limitations and 2% of withdrawal patients. Imminent death was cited as the justification for restrictions in 70% of cases, no relational potential was cited in 22%, and excessive burden was cited in 8%. CONCLUSIONS--Restrictions of medical intervention were used in all PICUs surveyed. Although severe chronic disease was common among restriction patients, acute disease was the predominant event precipitating placement of restrictions. Imminent death, not quality of life or excessive burden, was the most common justification.
1994
Levetown M; Pollack MM; Cuerdon TT; Ruttimann UE; Glover JJ
Jama
1994
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Journal Article
<a href="http://doi.org/10.1001/jama.272.16.1271" target="_blank" rel="noreferrer">10.1001/jama.272.16.1271</a>
Patient-controlled analgesia
Humans; Pain; Adult; Analgesics; Patient Selection; Analgesia; Infusions; Injections; Intravenous; Dose-Response Relationship; Drug; Opioid/adverse effects/therapeutic use; Safety; Patient-Controlled/instrumentation; Postoperative/prevention & control; Respiration/drug effects
In appropriately selected patients, PCA safely provides analgesia superior to that obtained with traditional IM prn opioid administration; however, to date, no compelling evidence shows that PCA is associated with a reduction in morbidity or a more rapid recovery. PCA is deceptively easy to prescribe; however, to use it effectively and safely requires experience, frequent patient assessment, and a skilled and knowledgeable nursing staff.
1999
Etches RC
The Surgical Clinics Of North America
1999
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Journal Article
<a href="http://doi.org/10.1016/s0039-6109(05)70384-4" target="_blank" rel="noreferrer">10.1016/s0039-6109(05)70384-4</a>
Not ready for hospice: characteristics of patients in a pre-hospice program
Female; Humans; Male; Aged; Middle Aged; Age Factors; Patient Selection; Illinois; Denial (Psychology); 80 and over; Non-U.S. Gov't; Research Support; Adaptation; Psychological; decision making; Comparative Study; Insurance; retrospective studies; social support; Patient Transfer/statistics & numerical data; Hospice Care/organization & administration/psychology; Health/statistics & numerical data; Patient Acceptance of Health Care/psychology/statistics & numerical data
CONTEXT: There are many patients with terminal illness for whom hospice care would be appropriate, but they either never enroll or enroll very late. In a pre-hospice program designed to help patients make the transition into hospice, we observed that many patients did not make the transition. OBJECTIVES: To understand more about the transition to hospice and the functions of a pre-hospice program, this paper compares patients who enrolled in hospice with those who died in the pre-hospice program. DESIGN, SETTING, AND PATIENTS: Data were collected from a retrospective review of the charts of 123 consecutive patients who enrolled in a prehospice program between January 1, 1995, and December 31, 1996. MAIN OUTCOME MEASURES: The patient's decision to transfer to home hospice or (perhaps, by not making a decision) to remain enrolled in the pre-hospice program until death. RESULTS: At the end of the research period, 38 patients had transferred to hospice and 36 had died without transfer. The remaining 49 patients had uncertain outcomes at the end of the research period. Patients who transferred to hospice were older (P = .02) and more likely to have secondary insurance (P = .05). In addition, those who enrolled in hospice were more likely to live alone (P = .03) and have psychosocial concerns noted by staff on admission (P = .05). CONCLUSIONS: Many patients died in this program that was designed only for transition to hospice. We found statistically significant differences characterizing the groups associated with transferring to hospice. Further studies to find out why these differences exist will be important in order to provide excellent end-of-life care for more people.
2001
Hayley DC; Muir JC; Stocking C; Hougham G; Sachs G
The American Journal Of Hospice & Palliative Care
2001
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/104990910101800606" target="_blank" rel="noreferrer">10.1177/104990910101800606</a>
Challenges in identifying children for palliative care
Child; Attitude to Death; Pilot Projects; quality of life; patient care team; Caregivers/psychology; Human; Palliative Care; Attitude of Health Personnel; Patient Selection
1996
Davies B; Steele R
Journal Of Palliative Care
1996
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
Metronomic therapy can increase quality of life during paediatric palliative cancer care, but careful patient selection is essential
Neoplasms/dt [drug Therapy]; Palliative Care; Patient Selection; Quality Of Life; Administration; Child; Female; Humans; Karnofsky Performance Status; Male; Metronomic; Neoplasms/mo [mortality]; Prospective Studies
AIM: Children with refractory or high-risk malignancies frequently suffer from poor quality of life during palliative care. This study explored the effect of metronomic drug administration on survival and quality of life in paediatric patients with various refractory or high-risk tumours. METHODS: We treated 17 patients with a maintenance therapy that consisted of metronomic thalidomide, etoposide and celecoxib. The endpoints of the study were overall and progression-free survival, changes in the Karnofsky-Lansky scores from baseline to the end of the study therapy and radiological responses. RESULTS: The median overall survival after the start of the study therapy was 6.2 months (range 2.0-57.7), and the six-, 12- and 24-month survival rates were 59%, 18% and 18%, respectively. The median progression-free survival was 3.2 months (range 0.3-17.8). The Karnofsky-Lansky scores increased significantly during the study therapy (p = 0.02), with 35% of the patients having a transient improvement in their clinical status. Radiologically, one partial response and two disease stabilisations were encountered. Grade III-V adverse events occurred in 76% of the patients. CONCLUSION: Metronomic therapy may increase the quality of life during palliative care for childhood cancer, but requires careful patient selection to minimise the risk of serious adverse events. Copyright _2016 Foundation Acta Paediatrica. Published by John Wiley & Sons Ltd.
Porkholm M; Toiviainen-Salo S; Seuri R; Lonnqvist T; Vepsalainen K; Saarinen-Pihkala UM; Pentikainen V; Kivivuori SM
Acta Paediatrica
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/apa.13338" target="_blank" rel="noreferrer">10.1111/apa.13338</a>
Feasibility of Conducting a Palliative Care Randomized Controlled Trial in Children With Advanced Cancer: Assessment of the PediQUEST Study
Neoplasms/th [therapy]; Palliative Care; Adolescent; Child; Feasibility Studies; Female; Humans; Longitudinal Studies; Male; Palliative Care/mt [methods]; Patient Dropouts; Patient Selection; Pilot Projects; Preschool; Terminal Care
CONTEXT: Pediatric palliative care randomized controlled trials (PPC-RCTs) are uncommon. OBJECTIVES: To evaluate the feasibility of conducting a PPC-RCT in pediatric cancer patients. METHODS: This was a cohort study embedded in the Pediatric Quality of Life and Evaluation of Symptoms Technology Study (NCT01838564). This multicenter PPC-RCT evaluated an electronic patient-reported outcomes system. Children aged two years and older, with advanced cancer, and potentially eligible for the study were included. Outcomes included: pre-inclusion attrition (patients not approached, refusals); post-inclusion attrition (drop-out, elimination, death, and intermittent attrition (IA; missing surveys) over nine months of follow-up); child/teenager self-report rates; and, reasons to enroll/participate. RESULTS: Over five years, of the 339 identified patients, 231 were eligible (in 22, we could not verify eligibility); 84 eligible patients were not approached and 43 declined participation. Patients not approached were more likely to die or have brain tumors. We enrolled 104 patients. Average enrollment rate was one patient per site per month; shortening follow-up from nine to three months (with optional re-enrollment) increased recruitment by 20%. A total of 87 patients completed the study (24 died) and 17 dropped out. Median IA was 41% in the first 20 weeks of follow-up and more than 60% in the eight weeks preceding death. Child/teenager self-report was 94%. Helping others, low burden procedures, incentives, and staff attitude were frequent reasons to enroll/participate. CONCLUSION: A PPC-RCT in children with advanced cancer was feasible, post-inclusion retention adequate; many families participated for altruistic reasons. Strategies that may further PPC-RCT feasibility include: increasing target population through large multicenter studies, approaching sicker patients, preventing exclusion of certain patient groups, and improving data collection at end of life. Copyright _ 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Dussel V; Orellana L; Soto N; Chen K; Ullrich C; Kang TI; Geyer JR; Feudtner C; Wolfe J
Journal Of Pain & Symptom Management
2015
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2014.12.010" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2014.12.010</a>
Crocker, et al.: Reducing barriers to parent participation in pediatric palliative care research.
Biomedical Research; Palliative Care; Patient Selection; Female; Humans; Male; Parents/psychology; Research Design/standards
Siden H; Steele R; Cadell S
Palliative Medicine
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/0269216315620945" target="_blank" rel="noreferrer">10.1177/0269216315620945</a>
A Systematic Review Of Reasons For Gatekeeping In Palliative Care Research.
Gatekeeping; Ethics; Palliative Care; Patient Selection; Refusal To Participate
BACKGROUND:
When healthcare professionals or other involved parties prevent eligible patients from entering a trial as a research subject, they are gatekeeping. This phenomenon is a persistent problem in palliative care research and thought to be responsible for the failure of many studies.
AIM:
To identify potential gatekeepers and explore their reasons for gatekeeping in palliative care research.
DESIGN:
A 'Review of Reasons' based on the systematic Preferred Reporting Items for Systematic Reviews and Meta-Analyses approach and a thematic synthesis.
DATA SOURCE:
PubMed, Embase, Cumulative Index to Nursing and Allied Health Literature and PsycINFO from 2000 to May 20 2015 were searched. Studies in children (aged <18 years) and patients with dementia were excluded.
RESULTS:
Thirty papers on gatekeeping in palliative care research were included. Five groups of potential gatekeepers were identified: healthcare professionals, research ethics committees, management, relatives and researchers. The fear of burdening vulnerable patients was the most reported reason for gatekeeping. Other reasons included 'difficulty with disclosure of health status', 'fear of burdening the patient's relatives', 'doubts about the importance or quality of the study', 'reticent attitude towards research and (research) expertise' and 'logistics'. In hospice and homecare settings, the pursuit of comfort care may trigger a protective attitude. Gatekeeping is also rooted in a (perceived) lack of skills to recruit patients with advanced illness.
CONCLUSION:
Gatekeeping is motivated by the general assumption of vulnerability of patients, coupled with an emphasis on the duty to protect patients. Research is easily perceived as a threat to patient well-being, and the benefits appear to be overlooked. The patients' perspective concerning study participation is needed to gain a full understanding and to address gatekeeping in palliative care research.
Kars MC; van Thiel GJ; van der Graaf R; Moors M; de Graeff A; van Delden JJ
Palliative Medicine
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).