scholarly journals Validation of the FACETS-OF-PPC as an Outcome Measure for Children with Severe Neurological Impairment and Their Families—A Multicenter Prospective Longitudinal Study

Children ◽  
2021 ◽  
Vol 8 (10) ◽  
pp. 905
Author(s):  
Sophie Pelke ◽  
Julia Wager ◽  
Benedikt B. Claus ◽  
Kathrin Stening ◽  
Boris Zernikow ◽  
...  
Keyword(s):  
Palliative Care ◽  
Psychometric Properties ◽  
Outcome Measure ◽  
Outcome Measurement ◽  
Care Service ◽  
Palliative Care Service ◽  
Neurological Impairment ◽  
Prospective Longitudinal Study ◽  
Prospective Longitudinal ◽  
Severe Neurological Impairment

Outcome measurement in pediatric palliative care (PPC) is receiving increasing attention. The FACETS-OF-PPC, a multidimensional outcome measure for children with severe neurological impairment, has been developed and partly validated. This study aimed to conclude the validity of the German version of the FACETS-OF-PPC. A multicenter prospective study with two points of measurement has been conducted, employing confirmatory factor analyses, reliability analyses, and analyses to evaluate the tool’s sensitivity to change. Overall, 25 inpatient and outpatient teams throughout Germany recruited N = 227 parents of affected children and N = 238 professional caregivers. Participants filled out the FACETS-OF-PPC on the admission of a child to a palliative care service and at discharge from inpatient settings or two months after admission to outpatient services. The analyses revealed the questionnaire needing further adaption. Now, 17 of the original 34 items contribute to the construction of the questionnaire scales. The other items remain part of the questionnaire and may be evaluated descriptively. Furthermore, the FACETS-OF-PPC has moderate to appropriate internal consistency and is sensitive to change. Creating an outcome measure with good psychometric properties for the vulnerable population of children with severe neurological impairment appears extremely difficult. Considering these challenges, the FACETS-OF-PPC demonstrates adequate psychometric properties.

scholarly journals Development and psychometric validation of the family-centered multidimensional outcome measure for pediatric palliative care targeted to children with severe neurological impairmentis—A multicenter prospective study

2020 ◽  
pp. 026921632097562
Author(s):  
Sophie Pelke ◽  
Julia Wager ◽  
Benedikt B. Claus ◽  
Boris Zernikow ◽  
Mandira Reuther
Keyword(s):  
Palliative Care ◽  
Factor Analysis ◽  
Prospective Study ◽  
Outcome Measure ◽  
Neurological Impairment ◽  
Pediatric Palliative Care ◽  
Confirmatory Factor ◽  
Multicenter Prospective Study ◽  
Family Centered ◽  
Severe Neurological Impairment

Background: Comprehensive outcome measurement in pediatric palliative care focusing on the entire unit of care, that is, the affected child and its family, is crucial to depict treatment effects. Despite its increasing relevance, no appropriate multidimensional outcome measures exist for the largest patient group in this field, namely children with severe neurological impairments. Aim: The aim of this study was to develop and validate a family-centered multidimensional outcome measure for pediatric palliative care patients with severe neurological impairment that encompasses the entire unit of care. Design: Based on results of a qualitative study, the questionnaire was developed by consensus-based generation of questions. It was validated in a multicenter prospective study employing exploratory and confirmatory factor analyses as well as reliability and item analyses. Setting: A total of 11 pediatric palliative care teams across Germany aided in the recruitment of study participants. Questionnaires were answered by 149 parents of children with severe neurological impairment and 157 professional caregivers. Results: The exploratory factor analysis of parent data revealed a 6-factor structure of the questionnaire representing: symptoms, the child’s social participation, normalcy, social support, coping with the disease and caregiver’s competencies. This structure was verified by a confirmatory factor analysis of professional caregiver data. Five separate items regarding siblings, partners, and further symptoms not applicable for all patients were added to ensure full multidimensionality. Conclusion: A validated outcome tool for severely neurologically impaired pediatric palliative care patients, the FACETS-OF-PPC, now exists. Due to its concise length and appropriate psychometric properties, it is well suited for clinical application.

scholarly journals Spanish adaptation and validation of the supportive & palliative care indicators tool – SPICT-ES™

2018 ◽  
Vol 52 ◽  
pp. 3 ◽  
Author(s):  
Alfonso Alonso Fachado ◽  
Noemí Sansó Martínez ◽  
Marisa Martín Roselló ◽  
José Javier Ventosa Ria ◽  
Enric Benito Oliver ◽  
...  
Keyword(s):  
Palliative Care ◽  
Psychometric Properties ◽  
Internal Consistency ◽  
Balearic Islands ◽  
Ease Of Use ◽  
Care Needs ◽  
Chronic Patients ◽  
Prospective Longitudinal Study ◽  
Prospective Longitudinal ◽  
Palliative Care Needs

OBJECTIVE: To culturally adapt and validate the SPICTTM to Spanish, which is a brief and simple tool to support a better identification of chronic patients who have palliative care needs. METHODS: For this study, we designed a multicenter and national project between the centers of Galicia, Balearic Islands, and Andalusia. For the process of translation and cross-cultural adaptation of the SPICTTM to Spanish, we followed the steps proposed by Beaton et al. with successive translations and subsequent consensus of experts using the debriefing methodology. After the content validation was completed, the psychometric properties were validated. A prospective longitudinal study was designed with 188 patients from Galicia, the Balearic Islands, and Andalusia. The internal consistency and reliability of the test and retest was analyzed for 10 days by the same researcher. RESULTS: For more than 90% of the participants of the SPICT-ESTM, it seems simple to be filled out, and they consider it written in an understandable language. The average time to apply the questionnaire without prior knowledge was 4 minutes and 45 seconds. To evaluate the internal consistency of the instrument, we used the Kuder-Richardson formula 20. Internal consistency is 0.71. The agreement index of the Kappa test is between 0.983 and 0.797 for the different items. CONCLUSIONS: In this study, we demonstrate the equivalence of content with the original. In addition, the validation of the psychometric properties establishes that the SPICT-ESTM maintains adequate reliability and stability. If we add the satisfaction shown by the professionals and the ease of use, the SPICT-ESTM is an adequate tool for the identification of palliative patients with chronic diseases and palliative care needs.

Core outcome domains of pediatric palliative care for children with severe neurological impairment and their families: A qualitative interview study

2019 ◽  
Vol 34 (3) ◽  
pp. 309-318 ◽  
Author(s):  
Sophie Ribbers ◽  
Julia Wager ◽  
Almut Hartenstein-Pinter ◽  
Boris Zernikow ◽  
Mandira Reuther
Keyword(s):  
Palliative Care ◽  
Qualitative Content Analysis ◽  
Outcome Measurement ◽  
Symptom Control ◽  
Neurological Impairment ◽  
Pediatric Palliative Care ◽  
Core Outcome ◽  
Qualitative Interview Study ◽  
Severe Neurological Impairment ◽  
Relevant Outcome

Background: The interest in outcome measurement in pediatric palliative care is rising. To date, the majority of studies investigating relevant outcomes of pediatric palliative care focus on children with cancer. Insight is lacking, however, about relevant outcome domains for children with severe neurological impairment and their families. Aim: The aim of this study was to identify meaningful outcome domains of pediatric palliative care for children with severe neurological impairment and their families. Design: A qualitative research design following a constructivist research paradigm was employed. Guided interviews were conducted with parents of children with life-limiting conditions and severe neurological impairment and professional caregivers. The data were analyzed using qualitative content analysis. Setting: Overall, 10 cooperating pediatric palliative care institutions across Germany (outpatient and inpatient settings) aided in the recruitment of eligible parents and professional caregivers. A total of 11 interviews with 14 parents and 17 interviews with 20 professional caregivers were conducted. Results: Six core outcome domains of pediatric palliative care for children with severe neurological impairment and their families were identified, namely (1) symptom control, (2) respite and support, (3) normalcy, (4) security, (5) empowerment, and (6) coping with the disease, each consisting of 1 to 13 individual aspects. Conclusion: As for other diagnostic groups, symptom control is a relevant outcome domain for children with severe neurological impairment. However, other outcome domains which focus on the whole family and take into account the long disease trajectory, such as respite and support, security, empowerment, and coping with the disease, are also crucial.

scholarly journals Protocol for an exploratory, longitudinal single case study of a novel palliative care rehabilitative service

2021 ◽  
Vol 4 ◽  
pp. 131
Author(s):  
Fódhla Ní Chéileachair ◽  
Bridget M. Johnston ◽  
Cathy Payne ◽  
Fiona Cahill ◽  
Lisa Mannion ◽  
...  
Keyword(s):  
Palliative Care ◽  
Ordinal Data ◽  
Single Case ◽  
Care Service ◽  
Palliative Care Service ◽  
Categorical Variables ◽  
Potential Contribution ◽  
The Right ◽  
Prospective Longitudinal

Background: Early access to rehabilitation can improve quality of life for those with life-limiting illnesses and is highlighted as a core component of the Adult Palliative Care Services Model of Care for Ireland. Despite this, palliative rehabilitation remains under-utilised and under-developed. In 2020, the Sláintecare Integration Fund provided opportunity to pilot a novel rehabilitative palliative care service, “Palliat Rehab”. This protocol proposes a case study, which aims to advance understanding of the form, content, and delivery of the pilot service. Methods: A prospective, longitudinal, mixed-methods, case study design will be used to describe the service and to explore the experiences of patients, informal carers and clinicians. Additionally, data collection instruments will be tested and the utility of outcome measures will be examined. Data will be collected from documentary, survey, and interview sources. Quantitative data will be analysed using descriptive statistics, including chi-square tests for categorical variables, Mann-Whitney U tests for ordinal data, and t-tests/ ANOVA for continuous data. Qualitative data will be analysed using thematic analysis. Conclusions: New pathways are required to advance service provision to ensure that patients receive the ‘right care, in the right place, at the right time’. The development of ‘‘Palliat Rehab’’ offers opportunity to study an innovative service and consider its potential contribution to the achievement of Sláintecare goals. Investigating the service within its environmental context will lead to a better understanding of ‘how’ and ‘why’ things happen. Findings will be of value in assessing whether there is evidence that supports the service, and will be used to inform efforts to further develop and tailor the intervention.

scholarly journals Opioid-Induced Respiratory Depression in Pediatric Palliative Care Patients with Severe Neurological Impairment—A Scoping Literature Review and Case Reports

Children ◽  
2020 ◽  
Vol 7 (12) ◽  
pp. 312
Author(s):  
Maximilian David Mauritz ◽  
Carola Hasan ◽  
Larissa Alice Dreier ◽  
Pia Schmidt ◽  
Boris Zernikow
Keyword(s):  
Risk Factors ◽  
Palliative Care ◽  
Young Adults ◽  
Scoping Review ◽  
Pediatric Patients ◽  
Case Reports ◽  
Neurological Impairment ◽  
Opioid Therapy ◽  
Pediatric Palliative Care ◽  
Severe Neurological Impairment

Pediatric Palliative Care (PPC) addresses children, adolescents, and young adults with a broad spectrum of underlying diseases. A substantial proportion of these patients have irreversible conditions accompanied by Severe Neurological Impairment (SNI). For the treatment of pain and dyspnea, strong opioids are widely used in PPC. Nonetheless, there is considerable uncertainty regarding the opioid-related side effects in pediatric patients with SNI, particularly concerning Opioid-Induced Respiratory Depression (OIRD). Research on pain and OIRD in pediatric patients with SNI is limited. Using scoping review methodology, we performed a systematic literature search for OIRD in pediatric patients with SNI. Out of n = 521 identified articles, n = 6 studies were included in the review. Most studies examined the effects of short-term intravenous opioid therapy. The incidence of OIRD varied between 0.13% and 4.6%; besides SNI, comorbidities, and polypharmacy were the most relevant risk factors. Additionally, three clinical cases of OIRD in PPC patients receiving oral or transdermal opioids are presented and discussed. The case reports indicate that the risk factors identified in the scoping review also apply to adolescents and young adults with SNI receiving low-dose oral or transdermal opioid therapy. However, the risk of OIRD should never be a barrier to adequate symptom relief. We recommend careful consideration and systematic observation of opioid therapy in this population of patients.

scholarly journals 77 National Audit of Care At the End of Life (NACEL)—Round Two Findings

2021 ◽  
Vol 50 (Supplement_1) ◽  
pp. i12-i42
Author(s):  
D Hibbert
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Care Service ◽  
Palliative Care Service ◽  
Care Plan ◽  
Specialist Palliative Care ◽  
Experience Of Care ◽  
Outcomes Of Care ◽  
Specialist Palliative Care Service ◽  
The Right

Abstract   NACEL is a national comparative audit of the quality and outcomes of care experienced by the dying person and those important to them during the final admission in acute and community hospitals in England and Wales. Mental health inpatient providers participated in the first round but excluded from the second round. NACEL round two, undertaken during 2019/20, comprised: Data was collected between June and October 2019. 175 trusts in England and 8 Welsh organisations took part in at least one element of NACEL (97% of eligible organisations). Key findings include Recognising the possibility of imminent death: The possibility that the patient may die was documented in 88% of cases. The median time from recognition of dying to death was 41 hours (36 hours in the first round). Individual plan of care: 71% of patients, where it had been recognised that the patient was dying (Category 1 deaths), had an individualised end of life care plan. Of the patients who did not have an individualised plan of care, in 45% of these cases, the time from recognition of dying to death was more than 24 hours. Families’ and others’ experience of care: 80% of Quality Survey respondents rated the quality of care delivered to the patient as outstanding/excellent/good and 75% rated the care provided to families/others as outstanding/excellent/good. However, one-fifth of responses reported that the families’/others’ needs were not asked about. Individual plan of care: 80% of Quality Survey respondents believed that hospital was the “right” place to die; however, 20% reported there was a lack of peace and privacy. Workforce Most hospitals (99%) have access to a specialist palliative care service. 36% of hospitals have a face-to-face specialist palliative care service (doctor and/or nurse) available 8 hours a day, 7 days a week. NACEL round three will start in 2021.

scholarly journals The association between ethnicity, socioeconomic deprivation and receipt of hospital-based palliative care for people with Covid-19: A dual centre service evaluation

2021 ◽  
pp. 026921632110229
Author(s):  
Sabrina Bajwah ◽  
Polly Edmonds ◽  
Emel Yorganci ◽  
Rosemary Chester ◽  
Kirsty Russell ◽  
...  
Keyword(s):  
Palliative Care ◽  
Ethnic Minority ◽  
Primary Outcome ◽  
Minority Groups ◽  
Care Service ◽  
Palliative Care Service ◽  
Service Evaluation ◽  
Socioeconomic Deprivation ◽  
Black British ◽  
Multivariable Regression

Background: People from ethnic minority groups and deprived socioeconomic backgrounds have worse outcomes from COVID-19. Aim: To examine associations between ethnicity and deprivation with timing of palliative care referral for inpatients with COVID-19. Design: Service evaluation of consecutive patients with COVID-19 referred to palliative care. Sociodemographic (including age, sex, Index of Multiple Deprivation, ethnicity coded as White/non-White) and clinical variables were described. The primary outcome was timing of referral to palliative care. Associations between ethnicity and socioeconomic deprivation with the primary outcome were explored using multivariable regression. Setting/participants: Patients with COVID-19 referred to a hospital palliative care service across two London hospitals February–May 2020. Results: A total of 334 patients were included. 119 (36%) were from a non-White ethnic group; most commonly Black British (77, 23%) and Asian British (26, 8%). A longer time between admission and palliative care referral was associated with male gender (IRR 1.23, 95% CI 1.14–1.34) and lower levels of socioeconomic deprivation (IRR 1.61, 95% CI 1.36–1.90) but not ethnicity (IRR = 0.96, 95% CI 0.87–1.06). Conclusions: This large service evaluation showed no evidence that patients from ethnic minority or more deprived socioeconomic groups had longer time to palliative care referral. Ongoing data monitoring is essential for equitable service delivery.

scholarly journals Use of Alfentanil in Palliative Care

Pharmacy ◽  
2020 ◽  
Vol 8 (4) ◽  
pp. 240
Author(s):  
José António Ferraz Gonçalves ◽  
Filipa Sousa ◽  
Lucy Alves ◽  
Patrícia Liu ◽  
Sara Coelho
Keyword(s):  
Chronic Pain ◽  
Palliative Care ◽  
Retrospective Study ◽  
Pain Relief ◽  
Renal Impairment ◽  
Care Service ◽  
Palliative Care Service ◽  
Median Number ◽  
Second Line ◽  
Induction Of Tolerance

Alfentanil is used for chronic pain relief in palliative care. However, there is a dearth of data on its use. For this reason, a decision was made to review the use of alfentanil in palliative care. Retrospective study was carried out in a palliative care service. The files of patients who received alfentanil as an intravenous or subcutaneous continuous infusion for pain relief, between January 2018 and April 2019. In total, 111 patients received alfentanil out of 113 admissions. Of them, 56 were male, and the median age was 70 years. The median number of days on alfentanil was 6 (range 1 to 129). The most frequent primary reasons for switching to alfentanil was uncontrolled pain in 52 (46%) patients and renal impairment in 24 (21%) patients. The median 24-h initial dose of alfentanil was 4 mg (1–20), and the median final 24-h dose of alfentanil was 5 mg (1–60), (p < 0.001). The initial 24-h median number of rescue doses was 2 (0–8), and the final median number of rescue doses was 1 (0 to 8), (p = 0.025). In 56 patients who were on alfentanil for at least 7 days, the dose decreased in 3 (5%), remained stable in 10 (18%) and increased in 43 (77%). The patient on alfentanil for 129 days maintained the same dose throughout that period. Alfentanil can be a useful second-line opioid. The induction of tolerance does not seem to be particularly rapid with alfentanil.

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