The Quality of Life of Children Facing Life-Limiting Conditions and That of Their Parents in Belgium: A Cross-Sectional Study
Belgium; Quality of Life; outcomes; quality of life; Cross-Sectional Studies; life-limiting conditions; parents; paediatric palliative care; Cesarean Section; children’s palliative outcome scale (CPOS-2); patient-centred outcome measures
BACKGROUND: Paediatric palliative care (PPC) aims to improve children's quality of life, but this outcome is rarely measured in clinical care. PPC is provided in Belgium through six transmural paediatric liaison teams (PLTs) ensuring continuity of care for children with life-limiting or life-threatening conditions (LLC/LTC). This study aims to measure the quality of life (QoL) of children with LLC/LTC followed-up by PLTs and the QoL of their parents. METHODS: During interviews, an original socio demographic questionnaire, the Children palliative outcome scale-version 2 (CPOS-2), the Fragebogen für Kinder und Jugendliche zur Erfassung der gesundheitsbezogenen Lebensqualität (KINDL) and the Quality of life in life-threatening Illness-Family caregiver (QOLLTI-F) were filled in by PLT members. Statistics were used to investigate significant differences between scores. Results were discussed and interpreted with six PLTs. RESULTS: 73 children aged 1-18 were included in the study. Especially for items focusing on emotional items, children reported their QoL as higher than their parents did. The QoL scores were not significantly associated with the child's condition's severity. CONCLUSIONS: This study provides, for the first time, an overview of the QoL of children and parents followed-up by PLTs in Belgium.
Friedel M; Aujoulat I; Brichard B; Fonteyne C; Renard M; Degryse JM
Children
2023
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/10.3390/children10071167" target="_blank" rel="noreferrer noopener">10.3390/children10071167</a>
The Landscape of Outpatient Pediatric Palliative Care: A National Cross-Sectional Assessment
outpatient; palliative therapy; program development; advance care planning; analgesia; article; Cesarean Section; child; controlled study; demographics; funding; hospital patient; human; Palliative Care; patient referral; school child; United States; workflow
Abstract Context: Inpatient pediatric palliative care (PPC) has grown substantially over the past 20 years; however, PPC in the outpatient setting remains underdeveloped. Outpatient PPC (OPPC) offers opportunities to improve access to PPC as well as facilitate care coordination and transitions for children with serious illness. Objectives: This study aimed to characterize the national status of OPPC programmatic development and operationalization in the United States. Methods: Utilizing a national report, freestanding children's hospitals with existing PPC programs were identified to query OPPC status. An electronic survey was developed and distributed to PPC participants at each site. Survey domains included hospital and PPC program demographics; OPPC development, structure, staffing, and workflow; metrics of successful OPPC implementation; and other services/partnerships. Results: Of 48 eligible sites, 36 (75%) completed the survey. Clinic-based OPPC programs were identified at 28 (78%) sites. OPPC programs reported a median age of 9 years [range: 1-18 years] with growth peaks in 2011, 2012 and 2020. OPPC availability was significantly associated with increased hospital size [p= 0.05] and inpatient PPC billable full time equivalent staff [p= 0.01]. Top referral indications included pain management, goals of care, and advance care planning. Funding primarily came from institutional support and billing revenue. Conclusions: Although OPPC remains a young field, many inpatient PPC programs are growing into the outpatient setting. Increasingly, OPPC services have institutional support and diverse referral indications from multiple subspecialties. However, despite high demand, resources remain limited. Characterization of the current OPPC landscape is crucial to optimize future growth.
Autrey AK; James C; Mothi SS; Stafford C; Morvant A; Miller EG; Kaye EC
Journal of Pain and Symptom Management
2023
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.2023.02.006" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.02.006</a>
Vaccine Preventable Diseases in Pediatric Palliative Care - A Multicenter Cross-Sectional Study
Cesarean Section; Cross-Sectional Studies; Palliative Care; Vaccination; Vaccines
Context: Vaccine preventable diseases lead to distressful symptoms and complications among pediatric patients receiving specialized home palliative care. There was no data on the vaccination compliance.Objective: The objective was to determine the vaccination coverage, discuss the relevance of vaccinations and provide vaccination recommendations in pediatric palliative care.Methods: Vaccination data were compared in a multicenter cross-sectional study. Expert interviews were conducted to evaluate symptom burden. The vaccination status of patients treated by six German pediatric specialized home palliative care teams was recorded from 01/2019 to 12/2019. The data were compared to the national immunization schedule and the vaccination rate of a representative German pediatric cohort. Onset of missed vaccination was compared to the date of diagnosis of the life-limiting condition. A risk score was calculated to evaluate the relevance of each individual vaccinations.Results: Vaccination rates of Tdpa, haemophilus influenzae type B, poliomyelitis, hepatitis B, pneumococcal disease, meningococcal diseases type C, and MMR were lower compared to healthy controls. There were no significant differences in varicella. In most cases the discontinuation of recommended immunizations occurred after diagnosis of the palliative condition. Influenza had the highest risk score and was the most frequent vaccine preventable disease in retrospective data. This paper includes a pragmatic proposal for the management of vaccination in this vulnerable population.Conclusion: Children and adolescents with life-limiting conditions are at increased risk of vaccine preventable diseases. Individual vaccination counselling is recommended.
Vaillant V; Tretiakova I; Berthold D; Scheer M; Kimmig A; Hagenguth A; Kaestner J; Meinhardt A; Kriwy P; Wolff J; Hauch H; Tretiakova I
Journal of Pain and Symptom Management
2023
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.2022.10.014" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.10.014</a>
Limitation of Futile Therapy in the Opinion of Nursing Staff Employed in Polish Hospitals-Results of a Cross-Sectional Study
Attitude of Health Personnel; Nursing Staff; Adult; Cesarean Section; Child; Cross-Sectional Studies; Human; Medical Futility; Poland; Quality of Life; Surveys and Questionnaires
The debate on limiting futile therapy in the aspect of End of Life (EoL) care has been going on in Poland over the last decade. The growing demand for EoL care resulting from the aging of societies corresponds to the expectation of a satisfactory quality of life and self-determination. The authors designed a cross-sectional study using a newly designed questionnaire to assess the opinions of 190 nurses employed in intensive care units (ICUs) on futile therapy, practices, and the respondents' approach to the issue. The problem of futile therapy and its clinical implications are known to the nursing community. Among the most common reasons for undertaking futile therapy in adult patients, the respondents declared fear of legal liability for not taking such actions (71.58%), as well as fear of being accused of unethical conduct (56.32%), and fear of talking to the patient/patient's family and their reaction (43.16%). In the case of adult patients, the respondents believed that discontinuation of futile therapy should be decided by the patient (84.21%), followed by a doctor (64.21%). As for paediatric patients, two-thirds of the respondents mentioned a doctor and a court (64.74% and 64.21%, respectively). Overall, 65.26% of the respondents believe and agree that the comfort of the patient's last days is more important than the persistent continuation of therapy and prolonging life at all costs. The presented results clearly show the attitude of the respondents who defend the patient's dignity and autonomy.
Damps M; Gajda M; Kowalska M; Kucewicz-Czech E
International Journal of Environmental Research and Public Health
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/10.3390/ijerph192416975" target="_blank" rel="noreferrer noopener">10.3390/ijerph192416975</a>
A cross-sectional pilot study of compassion fatigue (CF), burnout (BO), and compassion satisfaction (CS) in pediatric palliative care (PPC) providers in the United States
Fatigue; Palliative Care; Pilot Projects; United States; burnout; pediatric palliative care; Cesarean Section; Compassion fatigue; compassion satisfaction
OBJECTIVE: Compassion fatigue (CF) is secondary traumatic distress experienced by providers from contact with patients' suffering. Burnout (BO) is job-related distress resulting from uncontrollable workplace factors that manifest in career dissatisfaction. Compassion satisfaction (CS) is emotional fulfillment derived from caring for others. The literature on BO in healthcare providers is extensive, whereas CF and CS have not been comprehensively studied. Because of ongoing exposure to patient and family distress, pediatric palliative care (PPC) providers may be at particular risk for CF. We conducted a cross-sectional pilot study of CF, BO, and CS among PPC providers across the United States. METHOD: The Compassion Fatigue and Satisfaction Self-Test for Helpers and a questionnaire of professional and personal characteristics were distributed electronically and anonymously to PPC physicians and nurses. Logistic and linear regression models for CF, BO, and CS as a function of potential risk factors were constructed. RESULTS: The survey response rate was 39%, primarily consisting of female, Caucasian providers. The prevalence of CF, BO, and CS was 18%, 12%, and 25%, respectively. Distress about a "clinical situation," physical exhaustion, and personal loss were identified as significant determinants of CF. Distress about "coworkers," emotional depletion, social isolation, and "recent involvement in a clinical situation in which life-prolonging activities were not introduced" were significant determinants of BO. Physical exhaustion, personal history of trauma, "recent involvement in a clinical situation in which life-prolonging activities were not introduced," and not discussing distressing issues were significant predictors of lower CS scores. Significance of results CF and BO directly influence the well-being and professional performance of PPC providers. To provide effective compassionate care to patients, PPC providers must be attentive to predictors of these phenomena. Further work is needed to explore additional causes of CF, BO, and CS in PPC providers as well as potential interventions.
Kase SM; Waldman ED; Weintraub AS
Palliative and Supportive Care
2018
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/10.1017/s1478951517001237" target="_blank" rel="noreferrer noopener">10.1017/s1478951517001237</a>