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      Atención telefónica en cuidados paliativos pediátricos: motivos de consulta y satisfacción de las familias Translated title: Assistência telefônica em cuidados paliativos pediátricos: motivos da consulta e grau de satisfação das famílias Translated title: Telephone attention in pediatric palliative care: reasons for consultation and family satisfaction levels

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          Abstract

          Resumen: Introducción: los servicios de consulta telefónica insertos en programas de cuidados paliativos pediátricos (CPP), contribuyen a resolver algunos problemas, evitando, en ocasiones, consultas presenciales. Objetivo: describir las consultas telefónicas recibidas por la Unidad de Cuidados Paliativos Pediátricos del Centro Hospitalario Pereira Rossell (UCPP-CHPR), el nivel de resolutividad y el grado de satisfacción respecto a la consulta. Material y método: estudio descriptivo, prospectivo, del 1/8/2019 al 30/9/2019; revisión de registros de llamadas recibidas y encuesta telefónica posterior. Se incluyeron todas las consultas recibidas. Se analizaron variables demográficas, motivo de la llamada (administrativos, necesidad de intervención); nivel de satisfacción con la respuesta, capacidad de evitar consulta presencial. Resultados: se registraron 93 consultas telefónicas de 53 personas; mediana de edad 34 años, mujeres: 48/53; madres: 35; procedencia: sur del país 77; medio urbano: 64; motivos de consulta: administrativo 53/93 (solicitud de fármacos/insumos médicos 30, agendar consulta 14, solicitud de traslados 9); de necesidad de intervención 40/93 (síntomas molestos 12, problemas con prótesis 8, dudas respecto a fármacos 6, cuidados de enfermería 6, problemas psicoemocionales o sociales 4, respectivamente). En la opinión de las personas incluidas la consulta telefónica evitó una consulta/gestión presencial 66/93; expresaron satisfacción con las respuestas 91/93. Conclusiones: el alto número de consultas administrativas, la capacidad para evitar una consulta presencial y la satisfacción reportada por los padres y cuidadores posicionan a la consulta telefónica como un recurso a considerar, sistematizar y mejorar en la atención integral de niños con condiciones de salud pasibles de cuidados paliativos.

          Translated abstract

          Resumo: Introdução: os serviços de consulta telefônica, quando inseridos em programas de cuidados paliativos pediátricos (PPC), contribuem para a resolução de alguns problemas, evitando, às vezes, consultas presenciais. Objetivo: descrever: as consultas telefônicas recebidas na Unidade de Cuidados Paliativos Pediátricos do Centro Hospitalar Pereira Rossell (UCPP-CHPR); o seu nível de resolução e seu grau de satisfação em relação à consulta. Materiais e métodos: estudo descritivo, prospectivo, de 8/1/2019 a 30/9/2019; revisão dos registros das ligações recebidas e posterior pesquisa telefônica. Incluíram-se todas as consultas recebidas. Analisamos as variáveis demográficas, o motivo da ligação (administrativa, necessidade de intervenção); nível de satisfação com a resposta e capacidade de evitar a consulta presencial. Resultados: registraram-se 93 atendimentos telefônicos de 53 pessoas; idade média de 34 anos, mulheres: 48/53; mães: 35; origem: sul do país 77; centros urbanos: 64; motivos da consulta: administrativos 53/93 (solicitação de medicamentos/insumos médicos 30, agendamento da consulta 14, solicitação de transferências 9; necessidade de intervenção 40/93 (desconforto: 12, problemas com próteses 8, dúvidas sobre drogas 6, cuidados de enfermagem 6, problemas psicoemocionais ou sociais 4). Na opinião das pessoas pesquisadas a consulta telefônica evitou uma consulta/gestão presencial 66/93; manifestaram satisfação com as respostas 91/93. Conclusões: o elevado número de consultas administrativas, a possibilidade de evitar a consulta presencial e a satisfação relatada pelos pais e cuidadores em relação à consulta telefônica, sugere-a como recurso para organizar, sistematizar e aprimorar a atenção integral à criança que vai ser escolhida para receber cuidados paliativos.

          Translated abstract

          Summary: Introduction: telephone consultation services included in pediatric palliative care programs (PPC), contribute to solving some problems, and sometimes decrease in-person consultations. Objective: describe the telephone consultations received by the Pediatric Palliative Care Unit of the Pereira Rossell Children’s Hospital Center (UCPP-CHPR), their level of resolution and satisfaction degree with the consultation. Materials and methods: prospective, descriptive study taking place from 8/1-9/30/2019; review of call records received and subsequent telephone survey. All queries received were included. We analyzed demographic variables, reason for the call (administrative, need for intervention), level of satisfaction with the response, success in decreasing in-person consultation. Results: we recorded 93 telephone consultations from 53 people; median age 34 years, women: 48/53; mothers: 35; origin: South of the country 77; urban centers: 64; reasons for consultation: administrative 53/93 (request for drugs/ medical supplies 30, schedule consultation 14, request for transfers 9); need for intervention 40/93 (discomforting symptoms 12, problems with prosthetics 8, doubts about drugs 6, nursing care 6, psycho-emotional or social problems 4). According to the people surveyed the telephone consultation saved an in-person consultation 66/93, expressed satisfaction with the answers 91/93. Conclusions: the high number of administrative consultations, the possibility of decreasing in-person consultations, and the satisfaction levels reported by parents and caregivers indicate that telephone consultations are a resource to consider, systematize and improve in order to provide a more comprehensive care for children with health conditions that may require palliative care.

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          Pain Assessment and Treatment in Children With Significant Impairment of the Central Nervous System.

          Pain is a frequent and significant problem for children with impairment of the central nervous system, with the highest frequency and severity occurring in children with the greatest impairment. Despite the significance of the problem, this population remains vulnerable to underrecognition and undertreatment of pain. Barriers to treatment may include uncertainty in identifying pain along with limited experience and fear with the use of medications for pain treatment. Behavioral pain-assessment tools are reviewed in this clinical report, along with other strategies for monitoring pain after an intervention. Sources of pain in this population include acute-onset pain attributable to tissue injury or inflammation resulting in nociceptive pain, with pain then expected to resolve after treatment directed at the source. Other sources can result in chronic intermittent pain that, for many, occurs on a weekly to daily basis, commonly attributed to gastroesophageal reflux, spasticity, and hip subluxation. Most challenging are pain sources attributable to the impaired central nervous system, requiring empirical medication trials directed at causes that cannot be identified by diagnostic tests, such as central neuropathic pain. Interventions reviewed include integrative therapies and medications, such as gabapentinoids, tricyclic antidepressants, α-agonists, and opioids. This clinical report aims to address, with evidence-based guidance, the inherent challenges with the goal to improve comfort throughout life in this vulnerable group of children.
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            Effectiveness of a transitional home care program in reducing acute hospital utilization: a quasi-experimental study

            Background Improving healthcare utilization is essential as health systems around the world grapple with the escalating demands for acute hospital resources. Evidence suggests that transitional care programs are effective to improve utilization of healthcare. However, the evidence for transitional care programs that enhance the home medical care model and provide multi-disciplinary patient-centered care is not well established. We evaluated if a transitional home care program operated by the Singapore General Hospital was effective in reducing acute hospital utilization. Methods We performed a quasi-experimental study using a pre-post design to evaluate the effectiveness of a transitional home care program in reducing hospital admissions and emergency department attendances of medically complex patients enrolled into the program in a tertiary hospital in Singapore. Patients received a comprehensive needs assessment performed by the physician and a nurse case manager in the home setting, followed by an individualized care plan that included medical and nursing care, patient education and coordination of care with hospital specialists and community services. Primary study outcomes were emergency department attendances and hospital admissions to all hospitals. These were extracted from hospital administrative data and national health records. Wilcoxon Signed Ranks Test was used for assess differences in pre and post continuous data. Results Overall, 262 patients were enrolled into the program and 259 were analyzed. Patients had a 51.6% and 52.8% reduction in hospital admissions in the three-month and six-month post enrollment, respectively. Similarly, a 47.1% and 48.2% reduction was observed for emergency department attendances in the three and six months post enrollment, respectively. The average difference in per patient hospital bed days in the pre- and post-enrollment periods were 12.05 days and 20.03 days at the 3-month and 6-month periods, respectively. Conclusions Patients enrolled in the transitional home care program had significantly lower acute hospital utilization through the reduction of emergency department attendances and hospital admissions. A comprehensive assessment of patients’ medical and social needs in the home setting and formulation of an individualized care plan optimized post-discharge care for medically complex patients.
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              Paediatric palliative care improves patient outcomes and reduces healthcare costs: evaluation of a home-based program

              Background Around the world, different models of paediatric palliative care have responded to the unique needs of children with life shortening conditions. However, research confirming their utility and impact is still lacking. This study compared patient-related outcomes and healthcare expenditures between those who received home-based paediatric palliative care and standard care. The quality of life and caregiver burden for patients receiving home-based paediatric palliative care were also tracked over the first year of enrolment to evaluate the service’s longitudinal impact. Method A structured impact and cost evaluation of Singapore-based HCA Hospice Care’s Star PALS (Paediatric Advance Life Support) programme was conducted over a three-year period, employing both retrospective and prospective designs with two patient groups. Results Compared to the control group (n = 67), patients receiving home-based paediatric palliative care (n = 71) spent more time at home than in hospital in the last year of life by 52 days (OR = 52.30, 95% CI: 25.44–79.17) with at least two fewer hospital admissions (OR = 2.46, 95% CI: 0.43–4.48); and were five times more likely to have an advance care plan formulated (OR = 5.51, 95% CI: 1.55–19.67). Medical costs incurred by this group were also considerably lower (by up to 87%). Moreover, both patients’ quality of life (in terms of pain and emotion), and caregiver burden showed improvement within the first year of enrolment into the programme. Discussion Our findings suggest that home-based paediatric palliative care brings improved resource utilization and cost-savings for both patients and healthcare providers. More importantly, the lives of patients and their caregivers have improved, with terminally ill children and their caregivers being able to spend more quality time at home at the final stretch of the disease. Conclusions The benefits of a community paediatric palliative care programme have been validated. Study findings can become key drivers when engaging service commissioners or even policy makers in appropriate settings.
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                Author and article information

                Journal
                adp
                Archivos de Pediatría del Uruguay
                Arch. Pediatr. Urug.
                Sociedad Uruguaya de Pediatría (Montevideo, , Uruguay )
                0004-0584
                1688-1249
                June 2021
                : 92
                : 1
                : e201
                Affiliations
                [2] orgnameUniversidad de la República orgdiv1Facultad de Medicina orgdiv2Clínica Pediátrica Uruguay
                [1] orgnameUniversidad de la República orgdiv1Facultad de Medicina orgdiv2Clínica Pediátrica Uruguay
                Article
                S1688-12492021000101201 S1688-1249(21)09200101201
                10.31134/ap.92.1.2
                db76e7bb-eb59-4845-bf4a-43cb5fc6fd7b

                This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.

                History
                : 12 May 2020
                : 23 November 2020
                Page count
                Figures: 0, Tables: 0, Equations: 0, References: 26, Pages: 0
                Product

                SciELO Uruguay

                Categories
                Artículo Original

                Cuidados paliativos,Pediatria,Pediatría,Telemedicine,Palliative care,Pediatrics,Telemedicina

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