Advance Care Planning For Adolescents with Cancer and Their Parents: Study Protocol of the Boost Pacp Multi-Centre Randomised Controlled Trial and Process Evaluation
Child; Adolescent; Humans; Terminal Care; Surveys and Questionnaires; Parents; Communication; Advance Care Planning; Randomized Controlled Trials as Topic; Multicenter Studies as Topic; Advance care planning; Neoplasms/therapy; Adolescent; Multi-Centre randomised controlled trial; Paediatric oncology; Paediatric palliative care; Parent-adolescent communication
BACKGROUND: Research has highlighted the need for evidence-based interventions to improve paediatric advance care planning (pACP) in adolescents with cancer. Although adolescents express the desire and ability to share their values, beliefs and preferences for treatment, there is a lack of structured multicomponent interventions to improve parent-adolescent communication on different ACP themes including those not limited to end-of-life care. The aim of this study is to evaluate the effectiveness and implementation, context and mechanisms of impact of a novel ACP program in paediatric oncology. METHODS: We will conduct a multi-centre parallel-group randomised controlled superiority trial with embedded mixed-methods process evaluation in Flanders, Belgium. Adolescents aged 10-18 who have cancer, and their parent(s) will be recruited via all four university hospitals in Flanders, Belgium, and support groups. Families will be randomised to receive care as usual or the multicomponent BOOST pACP program, consisting of three conversation sessions between an external facilitator and the adolescent and parent(s). The primary endpoint is improved parent-adolescent communication from the perspective of the adolescent. Secondary endpoints are adolescents' and parents' attitudes, self-efficacy, intention and behaviour regarding talking about ACP themes with each other, parents' perspective of shared decision making in the last clinical encounter, and the paediatric oncologist's intention and behaviour regarding talking about ACP themes with the family. Measurements will be performed at baseline, at 3 months and at 7 months using structured self-reported questionnaires. We will perform a process evaluation in the intervention group, with measurement throughout and post-intervention, using structured diaries filled out by the facilitators, interviews with facilitators, interviews with involved paediatric oncology teams, and audio-recordings of the BOOST pACP conversations. DISCUSSION: The BOOST pACP program has been developed to stimulate conversations on ACP themes between parent(s) and the adolescents, simultaneously lowering the threshold to discuss similar themes with healthcare professionals, initiating a process of normalization and integration of ACP in standard care. This combined outcome and process evaluation aims to contribute to building the necessary evidence to improve ACP in paediatric oncology. TRIAL REGISTRATION: The study is registered at ISRCTN, ISRCTN33228289 . Registration date: January 22, 2021.
van Driessche A; De Vleminck A; Gilissen J; Kars MC; van der Werff TBJ; Deliens L; Cohen J; Beernaert K
BMC Pediatrics
2021
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/10.1186/s12887-021-02841-7" target="_blank" rel="noreferrer noopener">10.1186/s12887-021-02841-7</a>
Palliative care research protocols: a special case for ethical review?
Humans; Attitude of Health Personnel; Research; Palliative Care/ethics; Ethics Committees; Multi-site Ethics; Biomedical Research/ethics; Multicenter Studies as Topic
Between October 2001 and May 2002 the Chairperson and Vice-Chairperson of each Multicentre Research Ethics Committee (MREC) in England, Wales and Scotland took part in a semi-structured interview to ascertain the attitudes of MRECs to palliative care research. Interviews were transcribed and analysed using a grounded theory approach. Most respondents said each protocol was reviewed on its own merits, according to broad ethical principles, but were equivocal as to whether palliative care protocols posed particular or different challenges compared to those from other specialties. Respondents said they reviewed only a small number of palliative care protocols, and that they were less experienced with some of the study methods utilized, particularly qualitative designs. Four main themes emerged from the analysis. Respondents expressed concerns about the protocol itself--in regard to safeguarding the principles of autonomy and justice. There were concerns about how the research would be carried out, especially the protection of patients and the influence and input of the researcher in the process. The third theme concerned the impact of the research on the participant, particularly intrusion, potential distress and the existence of support mechanisms. Fourthly, respondents identified patient groups receiving palliative care (children, the elderly, bereaved families, patients in intensive therapy units, and those from ethnic groupings), who they considered might be particularly vulnerable.
2003
Stevens T; Wilde D; Paz S; Ahmedzai SH; Rawson A; Wragg D
Palliative Medicine
2003
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/10.1191/0269216303pm786oa" target="_blank" rel="noreferrer">10.1191/0269216303pm786oa</a>
Pediatric risk of mortality (PRISM) score
Child; Humans; infant; Intensive Care Units; mortality; Severity of Illness Index; Risk Factors; Pediatric; Preschool; Infant Mortality; Multicenter Studies as Topic; ROC Curve
The Pediatric Risk of Mortality (PRISM) score was developed from the Physiologic Stability Index (PSI) to reduce the number of physiologic variables required for pediatric ICU (PICU) mortality risk assessment and to obtain an objective weighting of the remaining variables. Univariate and multivariate statistical techniques were applied to admission day PSI data (1,415 patients, 116 deaths) from four PICUs. The resulting PRISM score consists of 14 routinely measured, physiologic variables, and 23 variable ranges. The performance of a logistic function estimating PICU mortality risk from the PRISM score, age, and operative status was tested in a different sample from six PICUs (1,227 patients, 105 deaths), each PICU separately, and in diagnostic groups using chi-square goodness-of-fit tests and receiver operating characteristic (ROC) analysis. In all groups, the number and distribution of survivors and nonsurvivors in adjacent mortality risk intervals were accurately predicted: total validation group (chi 2(5) = 0.80; p greater than .95), each PICU separately (chi 2(5) range 0.83 to 7.38; all p greater than .10), operative patients (chi 2(5) = 2.03; p greater than .75), nonoperative patients (chi 2(5) = 2.80, p greater than .50), cardiovascular disease patients (chi 2(5) = 4.72; p greater than .25), respiratory disease patients (chi 2(5) = 5.82; p greater than .25), and neurologic disease patients (chi 2(5) = 7.15; p greater than .10). ROC analysis also demonstrated excellent predictor performance (area index = 0.92 +/- 0.02).
1988-11
Pollack MM; Ruttimann UE; Getson PR
Critical Care Medicine
1988
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/10.1097/00003246-198811000-00006" target="_blank" rel="noreferrer">10.1097/00003246-198811000-00006</a>
Validity of the McGill Quality of Life Questionnaire in the palliative care setting: a multi-centre Canadian study demonstrating the importance of the existential domain
Humans; Palliative Care; Questionnaires; Longitudinal Studies; Mental Health; Sensitivity and Specificity; Reproducibility of Results; quality of life; Neoplasms/psychology; Mental Status Schedule; Multicenter Studies as Topic
This study was carried out in eight palliative care services in four Canadian cities. A revised version of The McGill Quality of Life Questionnaire (MQOL) is compared to a single-item scale measuring overall quality of life (SIS), and the self-administered version of the Spitzer Quality of Life Index (SA-QLI), to obtain evidence of validity. MQOL total score predicts SIS better than does SA-QLI, although much of the variance remains to be explained. The results of principal components analysis of data using this revised version of MQOL are similar to those from previous MQOL studies with different patient populations. The MQOL subscales, constructed on the basis of principal components analysis, demonstrate acceptable internal consistency reliability. The MQOL measures reflecting physical well-being and existential well-being are important for predicting SIS.
1997
Cohen SR; Mount BM; Bruera E; Provost M; Rowe J; Tong K
Palliative Medicine
1997
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/10.1177/026921639701100102" target="_blank" rel="noreferrer">10.1177/026921639701100102</a>