Thinking globally to improve care locally: A Delphi study protocol to achieve international clinical consensus on best-practice end-of-life communication with adolescents and young adults with cancer
For the sizeable subset of adolescents and young adults whose cancer is incurable, developmentally appropriate end-of-life discussions are critical. Standards of care for adolescent and young adult end-of-life communication have been established, however, many health-professionals do not feel confident leading these conversations, leaving gaps in the implementation of best-practice end-of-life communication. We present a protocol for a Delphi study informing the development and implementation of clinician training to strengthen health-professionals' capacity in end-of-life conversations. Our approach will inform training to address barriers to end-of-life communication with adolescents and young adults across Westernized Adolescent and Young Adult Cancer Global Accord countries. The Adolescent and Young Adult Cancer Global Accord team involves 26 investigators from Australia, New Zealand, the United States, Canada and the United Kingdom. Twenty-four consumers, including adolescents and young adults with cancer history and carers, informed study design. We describe methodology for a modified Delphi questionnaire. The questionnaire aims to determine optimal timing for end-of-life communication with adolescents and young adults, practice-related content needed in clinician training for end-of-life communication with adolescents and young adults, and desireability of evidence-based training models. Round 1 involves an expert panel of investigators identifying appropriate questionnaire items. Rounds 2 and 3 involve questionnaires of international multidisciplinary health-professionals, followed by further input by adolescents and young adults. A second stage of research will design health-professional training to support best-practice end-of-life communication. The outcomes of this iterative and participatory research will directly inform the implementation of best-practice end-of-life communication across Adolescent and Young Adult Cancer Global Accord countries. Barriers and training preferences identified will directly contribute to developing clinician-training resources. Our results will provide a framework to support further investigating end-of-life communication with adolescents and young adults across diverse countries. Our experiences also highlight effective methodology in undertaking highly collaborative global research.
Sansom-Daly UM; Wiener L; Darlington AS; Poort H; Rosenberg AR; Weaver MS; Schulte F; Anazodo A; Phillips C; Sue L; Herbert AR; Mack JW; Lindsay T; Evans H; Wakefield CE; Global Adolescent and Young Adult Cancer Accord End-of-Life Study Group
PLOS ONE
2022
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/10.1371/journal.pone.0270797" target="_blank" rel="noreferrer noopener">10.1371/journal.pone.0270797</a>
Deficits in Communication and Information Transfer Between Hospital-Based and Primary Care Physicians: Implications for Patient Safety and Continuity of Care
2007
Kripalani S; LeFevre F; Phillips C
Jama
2007
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/10.1001/jama.297.8.831" target="_blank" rel="noreferrer">10.1001/jama.297.8.831</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
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/10.1111/j.1365-2044.2004.03674.x" target="_blank" rel="noreferrer">10.1111/j.1365-2044.2004.03674.x</a>
A survey of the experiences of families with bereavement support services following a perinatal loss
Bereavement Services; Experiences; Loss; Mothers; Perinatal Death; Survey
Background: Although there are many studies that explore complicated grief, no studies have examined the impact of bereavement support services on the progression to complicated grief. The aims of our study were to describe the types of bereavement services utilised by families who have experienced a perinatal loss, and explore the impact of these services on the families’ bereavement journey.
Methods: Women who experienced a perinatal loss were sent a survey consisting of the modified Perinatal Post Traumatic Stress Disorder (PTSD) questionnaire, items addressing use of bereavement services, and the Inventory of Complicated Grief. Respondents also provided free-text comments.
Results: Forty-seven women were included in the study (34% response rate); 75% had a perinatal PTSD score which indicated the need for support from mental health services and 75% accessed services. Forty-three percent met the criteria for complicated grief. Women whose PTSD scores were in the highest quartile were most likely to access services; 45% of surveyed women used SIDS and Kids of the Australian Capital Territory (SKACT) accessing counselling (90%), support groups (50%), playgroups (15%) and the helpline (10%). Fifty-seven percent of women surveyed accessed non-SKACT services and predominantly used psychologists (66%) and general practitioners (30%). Requests were made for grief training of hospital staff, and for referral to bereavement services to be offered after hospital discharge.
Conclusions: Following a perinatal loss, a high proportion of women had high PTSD scores and complicated grief despite utilising local bereavement services. Our findings support the continuation of current support services with modifications that may potentially improve recovery following a perinatal loss.
Inati V; Matic M; Phillips C; Maconachie N; Vanderhook F; Kent AL
The Australian & New Zealand Journal Of Obstetrics & Gynaecology
2017
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://onlinelibrary.wiley.com/doi/10.1111/ajo.12661/abstract" target="_blank" rel="noreferrer">10.1111/ajo.12661</a>