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1.
Palliat Med ; : 269216319885818, 2019 Nov 04.
Artigo em Inglês | MEDLINE | ID: mdl-31680627

RESUMO

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.

2.
Palliat Med ; : 269216319883981, 2019 Oct 29.
Artigo em Inglês | MEDLINE | ID: mdl-31659938

RESUMO

BACKGROUND: Multidrug resistant pathogens are a large-scale healthcare issue. In particular, children with life-limiting conditions have a significantly increased risk of multidrug resistant pathogen colonization. Official hygiene requirements recommend children, who are colonized with multidrug resistant pathogens, to be isolated. In the context of pediatric palliative care, such isolation adversely affects the aim of social participation. To overcome this challenge of conflicting interests on a pediatric palliative care inpatient unit, a hygiene concept for patients colonized with multidrug resistant pathogens, called PALLINI, was implemented. AIM: The aim of this study was to identify the nurses' attitudes and opinions toward PALLINI. METHODS: Nurses (N = 14) from the pediatric palliative care unit were queried in guideline-oriented interviews. Interviews were analyzed qualitatively by means of content analysis. RESULTS: The following four categories were identified: (1) safety, (2) effort, (3) quality of care, and (4) participation. All categories demonstrated ambivalence by nursing staff regarding PALLINI. Ambivalence arose from guaranteeing infection control versus noncompliance by the families, additional workload for patients with multidrug resistant pathogens versus lack of resources, impaired relationship with the parents versus enabling better care for the child, as well as enabling some limited contact versus the larger goal of genuine social participation. Despite this, nurses reported the importance of arranging everyday-life for the patients so that they experience as much social participation as possible. CONCLUSION: The implementation of a new hygiene concept is challenging. Despite positive reception of PALLINI from the nurses, ambivalence remained. Addressing these ambivalences may be critical to best implement the new hygiene concept.

3.
BMJ Open ; 9(10): e031861, 2019 Oct 07.
Artigo em Inglês | MEDLINE | ID: mdl-31594898

RESUMO

INTRODUCTION: This protocol describes the objective and methods of a systematic review of the association between quantitative sensory testing (QST) measures and pain intensity or disability in paediatric chronic pain (PCP). The review will also assess whether the relationship strength is moderated by variables related to the QST method and pain condition; the use of QST in PCP (modalities, outcome measures and anatomical test sites as well as differentiating between pain mechanisms (eg, neuropathic vs nociceptive) and in selecting analgesics); the reliability of QST across the paediatric age range; the ability of QST to differentiate patients with chronic pain from healthy controls; and differences between anatomical test sites. METHODS AND ANALYSIS: Medline, PsycINFO, CINHAL, Web of Science, Scopus, Cochrane Library and OpenGrey will be searched. English language studies will be eligible if they recruit a sample aged 6-24 (inclusive) with chronic pain, including primary and secondary pain; apply at least one of the following QST modalities: chemical, electrical, mechanical (subgroups include pressure, punctate/brush and vibratory) or thermal stimulus to measure perception of noxious or innocuous stimuli applied to skin, muscle or joint; use a testing protocol to control for stimulus properties: modality, anatomical site, intensity, duration and sequence. Following title and abstract screening, the full texts of relevant records will be independently assessed by two reviewers. For eligible studies, one reviewer will extract study characteristics and data, and another will check for accuracy. Both will undertake independent quality assessments using the Appraisal Tool for Cross-Sectional Studies. A qualitative synthesis will be presented with discussion centred around different QST modalities. Where eligible data permit, meta-analyses will be performed separately for different QST modalities using comprehensive meta-analysis. ETHICS AND DISSEMINATION: Review findings will be reported in a peer-reviewed journal and presented at conferences. The study raises no ethical issues. PROSPERO REGISTRATION NUMBER: CRD42019134069.

4.
Schmerz ; 2019 Sep 23.
Artigo em Alemão | MEDLINE | ID: mdl-31549245

RESUMO

BACKGROUND: Emerging adulthood between the ages of 18 and 25 are vulnerable years that offer many opportunities and simultaneously represent huge challenges for autonomy and identity development. Chronic pain in this vulnerable stage of life is associated with long-term negative consequences. So far, knowledge regarding the effectiveness of treatment offers for this patient group is scarce. OBJECTIVE: The aim of this study is to examine the effectiveness of a multimodal inpatient pain therapy for young adults with chronic pain. In addition, the change and influence of the autonomy development will be investigated. MATERIALS AND METHODS: The present longitudinal study examined the effectiveness of a 3-week multimodal inpatient pain treatment in young adults with chronic pain. Three-month follow-up data from 74 patients aged 18-25 years (75.7% female) were included in the study. Standardized questionnaires were used to investigate pain characteristics, pain-associated and emotional impairments quality of life, and various facets of autonomy. RESULTS: The results show that pain-related and emotional impairments are significantly reduced after therapy. Furthermore, there is a significant improvement in the quality of life and resilience. The increased quality of life and reduced pain-related and emotional impairment are associated with a gain of autonomy convictions. DISCUSSION: Multimodal inpatient pain treatment seems to be effective during emerging adulthood. Autonomy convictions seem to be an important starting point for therapeutic success and have a modulating importance in terms of positive changes in emotional impairment and quality of live. Therefore, this aspect should be considered when pain treatment offers are developed for this age group.

5.
Pain ; 160(8): 1698-1707, 2019 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-31335640

RESUMO

We know little about the safety or efficacy of pharmacological medicines for children and adolescents with chronic pain, despite their common use. Our aim was to conduct an overview review of systematic reviews of pharmacological interventions that purport to reduce pain in children with chronic noncancer pain (CNCP) or chronic cancer-related pain (CCRP). We searched the Cochrane Database of Systematic Reviews, Medline, EMBASE, and DARE for systematic reviews from inception to March 2018. We conducted reference and citation searches of included reviews. We included children (0-18 years of age) with CNCP or CCRP. We extracted the review characteristics and primary outcomes of ≥30% participant-reported pain relief and patient global impression of change. We sifted 704 abstracts and included 23 systematic reviews investigating children with CNCP or CCRP. Seven of those 23 reviews included 6 trials that involved children with CNCP. There were no randomised controlled trials in reviews relating to reducing pain in CCRP. We were unable to combine data in a meta-analysis. Overall, the quality of evidence was very low, and we have very little confidence in the effect estimates. The state of evidence of randomized controlled trials in this field is poor; we have no evidence from randomised controlled trials for pharmacological interventions in children with cancer-related pain, yet cannot deny individual children access to potential pain relief. Prospero ID: CRD42018086900.

6.
Schmerz ; 33(4): 303-311, 2019 Aug.
Artigo em Alemão | MEDLINE | ID: mdl-31147770

RESUMO

BACKGROUND: To date only few studies have addressed the level of intelligence of children and adolescents with chronic pain. The few currently available studies suggest a cognitive performance of pediatric pain patients in the average range (IQ 85-115); however, only little is known about the relationship between pain characteristics and cognitive skills. OBJECTIVE: The aim of the study was to retrospectively examine the intelligence scores of severely impaired pediatric chronic pain patients to improve the knowledge about the association of pain and cognitive performance and to create a basis for further prospective studies. MATERIAL AND METHODS: In the exploratory evaluation data from N = 180 children and adolescents who were treated as inpatients at the German Pediatric Pain Center in Datteln in 2016 were included. Due to the standardization of the IQ scores a comparison within the sample was possible as well as a comparison to the norm sample. RESULTS: The intelligence level of severely impaired pediatric pain patients fell within the normal range (M = 99.32; SD = 14.13). Neither the main pain location nor the emotional variables or pain parameters (e.g. pain intensity) had a significant association with the IQ scores. Compared to the norm sample, pediatric pain patients had a higher processing speed. Intraindividual comparisons showed a significantly lower verbal IQ than performance IQ and a lower verbal comprehension compared to perceptual organization and processing speed. Moreover, there was a negative association between pain intensity, the verbal IQ and verbal comprehension. CONCLUSION: The results support the assumption that the intellectual performance of pediatric pain patients lies within the average range; however, the results indicate a limited competence in verbal abstraction and expressiveness of pediatric pain patients, which are negatively related to pain intensity. Further studies to examine causal relationships are needed.


Assuntos
Dor Crônica , Inteligência , Adolescente , Criança , Humanos , Testes de Inteligência , Estudos Prospectivos , Estudos Retrospectivos
7.
Eur J Pain ; 23(8): 1507-1518, 2019 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-31112345

RESUMO

BACKGROUND: Medically unexplained pain in children and adolescents is a common and increasing health care problem. Primary care is usually the first point of contact for these patients. It is the overall objective of this study to investigate treatment outcome of medically unexplained pain in paediatric primary care and to identify predictors of treatment failure. METHOD: In a prospective observational cohort study with three assessments over 6 months, N = 266 children (6-17 years) presenting to paediatric primary care due to medically unexplained pain were included. The primary outcome is treatment failure after 6 months defined as disabling chronic pain. Risk factors for treatment failure were identified by means of logistic regression analyses. RESULTS: At the 6-months follow-up, treatment proved unsuccessful in 22.6% of patients. In patients with headaches, high functional impairment and strong emotional pain burden at study inclusion, the risk for treatment failure was increased. However, when also including data on the initial treatment response, pain location and functional impairment were no longer significant. Patients who did not respond to treatment within the first 3 months were more likely to experience treatment failure (OR = 203.7 ; p < 0.001) at 6 months, as were children with a higher emotional pain burden at study inclusion (OR = 1.3; p = 0.007; R2  = 0.781). CONCLUSIONS: This study indicates that paediatric primary care is not sufficient for nearly one-quarter of the children with medically unexplained pain. Individuals without a positive treatment response after 3 months are at increased risk for treatment failure. SIGNIFICANCE: This study investigates the treatment outcome of medically unexplained pain in paediatric primary care. Individuals with a higher emotional pain burden at the first visit and those without positive treatment response after 3 months are at increased risk for treatment failure. Therefore, a stepped-care approach seems warranted. After an insufficient primary care trial of 3 months, patients should be transferred to pain specialists for a more intense treatment.

9.
Support Care Cancer ; 27(1): 33-42, 2019 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-30056529

RESUMO

CONTEXT: Opioids administered by various routes are a mainstay of tumour-related pain management. Subcutaneous or intravenous patient-controlled analgesia (PCA) with opioids is an appropriate and safe form of treatment for postoperative pain but studies on this form of administration are sparse in the setting of cancer pain despite widespread use. OBJECTIVE: To evaluate the published studies on opioids administered by subcutaneous and intravenous patient-controlled analgesia for patients with cancer pain. METHODS: Articles were identified from the Cochrane Central Register of Controlled Trials (The Cochrane Library Issue 7, 2016), PubMed (Medline; 1975 to 2016) and EMBASE (1974 to 2016). Additional reports were identified from the reference lists of retrieved papers. Studies based on original data with a focus on intravenous or subcutaneous PCA administration of opioids in patients suffering from cancer-related pain were selected. The language was restricted to Dutch, English or German. Predefined information was extracted depending on the topic. RESULTS: Fifty studies published since 1980 met the inclusion criteria. A wide range of study designs, study quality and research objectives were observed. The studies indicated use of standard or by proxy PCA in the inpatient and outpatient setting were safe and useful while significant adverse effects were rarely observed. CONCLUSION: This systematic review of the current evidence suggests PCA can be appropriately used in a wide range of clinical situations.


Assuntos
Analgesia Controlada pelo Paciente/métodos , Analgésicos Opioides/administração & dosagem , Dor do Câncer/tratamento farmacológico , Administração Intravenosa , Analgesia Controlada pelo Paciente/efeitos adversos , Analgésicos Opioides/efeitos adversos , Humanos , Injeções Subcutâneas , Neoplasias/tratamento farmacológico , Neoplasias/cirurgia , Manejo da Dor/efeitos adversos , Manejo da Dor/métodos , Dor Pós-Operatória/tratamento farmacológico
10.
BMC Palliat Care ; 17(1): 106, 2018 Sep 10.
Artigo em Inglês | MEDLINE | ID: mdl-30200942

RESUMO

BACKGROUND: Respiratory distress is one of the most common and frightening symptoms of children with life-limiting conditions. Because treatment of the underlying cause is frequently impossible or insufficient, in many children, symptomatic treatment is warranted. The purpose of this study was to describe the circumstances of the use of intranasal fentanyl in an acute attack of respiratory distress (AARD) in children receiving palliative care, as well as to describe outcomes and adverse events after its use. METHODS: Children and adolescents treated in a pediatric palliative unit or attended by a specialized home care team between 2010 and 2016 were included in this study. A retrospective chart review was conducted of those who were treated with intranasal fentanyl for an AARD. RESULTS: During the study period 16 children (0.5-18.6 years) with various life-limiting conditions were treated with intranasal fentanyl for AARD. In total, 70 AARDs were analyzed. In 74% of all AARDs, a single dose of intranasal fentanyl was used. Frequent causes for an AARD were excessive secretions and acute respiratory infection. The median starting dose of intranasal fentanyl was 1.5 µg/kg body weight. Labored breathing (96%), tachypnea (79%) and related suffering (97%) improved after treatment. An adverse event occurred in one child. CONCLUSIONS: Intranasal fentanyl may be a safe and effective medication for the treatment of acute attacks of respiratory distress in children with life-limiting conditions. However, prospective studies with larger sample sizes and a control group are needed to validate these findings.

11.
Clin J Pain ; 34(12): 1173-1179, 2018 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-30134282

RESUMO

OBJECTIVES: The assessment of pain-related disability in pediatric chronic pain patients plays an important role in research on the effectiveness of pain treatment. The present study aimed to compare the 2 available measures of pain-related disability in the German language, the Functional Disability Inventory (FDI) and Pediatric Pain Disability Index (PPDI), in terms of psychometric properties and convergent validity. In addition, associations between FDI/PPDI scores and sex, age, and pain locations were investigated. MATERIALS AND METHODS: Data of N=250 pediatric pain patients (Mage=14.4, SD=1.8) were collected at the patients' initial presentation to a specialized pediatric pain center. RESULTS: The results revealed similarly sound psychometric properties in terms of model fit, item difficulties, corrected item-total correlations, and missing values for both measures. However, item difficulties for the FDI were rather low. Both measures displayed good convergent validity in terms of associations with pain intensity, pain-related school absence, and emotional functioning (anxiety, depression). In both measures, girls had significantly higher scores than boys. No associations were found between the FDI/PPDI total scores and age or pain location. DISCUSSION: In conclusion, both measures are equally suited to assess pain-related disability in adolescents with chronic pain. The FDI should be used with caution in epidemiological studies due to the risk of floor effects. Further research is needed with regard to the relationship between pain-related disability and sex.

12.
Pain ; 159(11): 2223-2233, 2018 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-29939961

RESUMO

Fear of pain plays an important role in the maintenance of chronic pain. It may be reduced through exposure therapy. This 2-arm parallel samples randomized controlled trial aimed to investigate whether interoceptive exposure (IE) therapy enhances reductions in fear of pain (primary outcome), pain (pain intensity, pain-related disability, and school absence), and emotional characteristics (anxiety and catastrophizing) when implemented as an adjunctive treatment in the context of intensive interdisciplinary pain treatment for pediatric chronic pain patients. N = 126 adolescents, aged 11 to 17 years, who were receiving standard intensive interdisciplinary pain treatment were randomly assigned to either receive additional IE (n = 64) or additional relaxation therapy (RT) (n = 62). All patients were assessed at admission, discharge, and 3 months after discharge. The data of N = 104 patients were analyzed. Significant large reductions were found in the total score and subscale scores of the Fear of Pain Questionnaire for Children in both study groups (eg, total score [range 0-60; IE/RT]: admission M = 23.5/24.9; discharge M = 16.0/19.7; P < 0.001, (Equation is included in full-text article.)= 0.27) and mainly large reductions in pain characteristics. There were no greater decreases in the IE group (P > 0.1). The exploratory analyses revealed that the patients with high fear of pain before treatment (P < 0.05, (Equation is included in full-text article.)> 0.03) and the patients with abdominal pain (P < 0.04, (Equation is included in full-text article.)> 0.25) showed greater decreases in their fear of pain (total and subscale score) in the IE group than in the RT group. In conclusion, the results suggest that IE is not particularly effective for all the pediatric chronic pain patients, but the patients with high fear of pain before treatment and with abdominal pain strongly benefit from this intervention.

13.
Children (Basel) ; 5(7)2018 Jun 21.
Artigo em Inglês | MEDLINE | ID: mdl-29933542

RESUMO

A high prevalence of sleep problems exists in children and adolescents with life-limiting conditions (LLC) and severe psychomotor impairment (SPMI). This study aimed to compare the impacts of various child-related (pain, epilepsy, repositioning, medical care) and environment-related (light, noise, TV/radio, open door) factors on sleep in this vulnerable population. Data were obtained through the “Sleep Questionnaire for Children with Severe Psychomotor Impairment” (SNAKE) by proxy assessment. n = 212 children (mean age: 10.4 years) were included in the analyses. Logistic and linear regression models were used to compare child- and environment-related factors against the global rating of children’s sleep quality, five SNAKE scales, children’s sleep duration, and sleep efficacy. Pain increased the risk of sleeping poorly four-fold (OR (odds ratio) = 4.13; 95% CI (confidence interval): 1.87⁻9.13) and predicted four sleep problems as assessed by the SNAKE. Children who needed to reposition during the night were at three times greater risk of sleeping poorly (OR = 3.08; 95% CI: 1.42⁻6.69). Three of the five SNAKE scales were predicted through nocturnal repositioning. Repositioning and epilepsy predicted a reduced sleep duration and low sleep efficacy. None of the environment-related factors exhibited statistically significant results. This study emphasizes the urgent need for reliable pain detection in the context of sleep disturbances in severely ill children.

14.
Children (Basel) ; 5(6)2018 May 31.
Artigo em Inglês | MEDLINE | ID: mdl-29857504

RESUMO

In Germany, every child with a life-limiting condition suffering from symptoms that cannot sufficiently be controlled is eligible by law for specialized pediatric palliative home care (SPPHC). It is the aim of this study to describe the demographic and clinical characteristics of children referred to SPPHC and to compare patients with cancer and non-cancer conditions. The prospective multicenter study includes data on 75 children (median age 7.7 years, 50.7% male). The majority had non-cancer conditions (72%). The most common symptoms were cognitive impairment, somatic pain, impairment in communication or swallowing difficulties. Swallowing difficulties, seizures, and spasticity occurred significantly more often in non-cancer patients (p < 0.01). Cancer patients received antiemetics significantly more often (permanent and on demand) than non-cancer patients (p < 0.01). Significantly more non-cancer patients had some type of feeding tube (57.3%) or received oxygen (33.3%) (p < 0.01). Central venous catheters had been fitted in 20% of the patients, mostly in cancer patients (p < 0.001). Tracheostomy tubes (9.3%) or ventilation (14.7%) were only used in non-cancer patients. In conclusion, patients referred to SPPHC are a diverse cohort with complex conditions including a large range of neurologically originating symptoms. The care of pediatric palliative care patients with cancer is different to the care of non-cancer patients.

15.
Children (Basel) ; 5(2)2018 Feb 01.
Artigo em Inglês | MEDLINE | ID: mdl-29389907

RESUMO

Sleep problems are a common and serious issue in children with life-limiting conditions (LLCs) and severe psychomotor impairment (SPMI). The "Sleep Questionnaire for Children with Severe Psychomotor Impairment" (Schlaffragebogen für Kinder mit Neurologischen und Anderen Komplexen Erkrankungen, SNAKE) was developed for this unique patient group. In a proxy rating, the SNAKE assesses five different dimensions of sleep(-associated) problems (disturbances going to sleep, disturbances remaining asleep, arousal and breathing disorders, daytime sleepiness, and daytime behavior disorders). It has been tested with respect to construct validity and some aspects of criterion validity. The present study examined whether the five SNAKE scales are consistent with parents' or other caregivers' global ratings of a child's sleep quality. Data from a comprehensive dataset of children and adolescents with LLCs and SPMI were analyzed through correlation coefficients and Mann-Whitney U testing. The results confirmed the consistency of both sources of information. The highest levels of agreements with the global rating were achieved for disturbances in terms of going to sleep and disturbances with respect to remaining asleep. The results demonstrate that the scales and therefore the SNAKE itself is well-suited for gathering information on different sleep(-associated) problems in this vulnerable population.

16.
Clin J Pain ; 34(9): 795-803, 2018 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-29485533

RESUMO

OBJECTIVES: Although treatment satisfaction is recommended in the Pediatric Initiative on Methods, Measurement, and Pain Assessment in Clinical Trials (PedIMMPACT) as a core outcome measure in pediatric chronic pain clinical trials, no results regarding this outcome measure have been reported to date for intensive interdisciplinary pain treatment in children and adolescents. The aim of the present study was to close this gap and investigate the treatment satisfaction of pediatric patients with different chronic pain disorders who received intensive interdisciplinary pain treatment and who were followed up over 4 years. METHODS: Treatment satisfaction and treatment outcome were assessed immediately after and 6, 12, and 48 months after intensive interdisciplinary pain treatment for N=104 patients (Mage=13.5; SD=2.2). RESULTS: Patients and their parents were highly satisfied with the treatment and strongly agreed in their ratings. Emotional distress before treatment and younger age increased the risk of being dissatisfied. Analyses revealed that treatment satisfaction was independent of treatment outcome. DISCUSSION: Taken together, the results show that treatment satisfaction is not associated with treatment outcome. A global judgment of satisfaction seems to be an independent outcome measure but may be inappropriate for measuring the multifaceted construct of satisfaction. Instead, separate satisfaction ratings in specific areas, for example, treatment methods or outcome, may be more suitable.

17.
J Palliat Med ; 21(4): 552-564, 2018 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-29313744

RESUMO

BACKGROUND: Dyspnea is one of the most frequent symptoms in children with complex chronic conditions (CCC) requiring palliative care. Although it is a subject of high importance, there has been little research on dyspnea in critically ill children. OBJECTIVE: The purpose of this systematic review was to investigate the prevalence and causes of dyspnea in children with CCC and to identify the current state of research on the measurements, treatments, and the evaluation of therapeutic interventions. METHODS: A systematic literature search for relevant literature from 1990 until the present was performed using the online database PubMed. Information about prevalence, pathophysiological mechanisms, measurement, and treatment of dyspnea was extracted from all 43 eligible publications. RESULTS: The prevalence ranged widely from 17% to 80%. Breathlessness was primarily attributed to a disease-specific pathophysiology. A multidimensional approach has not been reported. Assessment of dyspnea included eight tools using either subjective self- or proxy-ratings or objective measures. Evidence for the effectiveness of various treatment approaches was low. DISCUSSION: The prevalence rates for dyspnea could be generalized across all conditions and patient subgroups. The biopsychosocial-spiritual approach was not addressed by the studies. There is a lack of an adequate and validated measurement tool that can be applied to children of various ages and diagnoses, communication ability, and practicable across different settings. Most found treatment approaches lacked good evidence in children. CONCLUSION: Although the prevalence rate of dyspnea in pediatric palliative care is high, it has been poorly studied.

18.
J Palliat Med ; 21(2): 169-176, 2018 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-29297749

RESUMO

BACKGROUND: The increasing number of children with life-threatening and life-limiting conditions requires an individualized approach and additional supportive care in hospitals. However, these patients' characteristics and their prevalence in a pediatric tertiary hospital setting have not been systematically analyzed. OBJECTIVE: This study aimed to determine the proportion of hospitalized children who are receiving care for life-threatening diseases with feasible curative treatments and for life-limiting diseases (LLDs) with inevitable premature death as opposed to care for acute or chronic diseases; additionally, it sought to compare patient characteristics, clinical features, and symptoms within these subgroups. DESIGN/SETTING/SUBJECTS: A cross-sectional survey of 208 patients was conducted at a large tertiary pediatric care center through standardized interviews with the responsible medical teams. Patient subgroups were defined as those with acute, chronic, life-threatening, or LLDs. RESULTS: The comparisons of patient subgroups showed distinct differences and revealed that nearly half of all inpatients suffer from life-threatening (20%) or LLDs (27%), with a high proportion of rare diseases (82%). They experienced a high burden of symptoms in all parameters of clinical features, including high demand for medications and nursing care. CONCLUSION: A substantial proportion of pediatric inpatients suffered from life-threatening or LLDs, as well as rare diseases, indicating a high burden of symptoms and a high need for additional care. The results suggest a substantial need to implement pediatric palliative care structures in tertiary care centers for patients in critical and terminal conditions.

19.
Am J Hosp Palliat Care ; 35(7): 951-958, 2018 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-29316802

RESUMO

BACKGROUND: Multidisciplinary teamwork is considered central to pediatric palliative care. Although different studies state that volunteers play an essential role in palliative care, little is known about the collaboration between volunteers and staff. AIM: This study aims to explore and compare the perspectives of volunteers and staff regarding collaboration in a pediatric palliative care unit. DESIGN: A mixed-methods approach was chosen to appropriately reflect the complex aspects of collaboration. SETTING/PARTICIPANTS: Both face-to-face interviews with staff who work together with volunteers and a group discussion with all volunteers were conducted. These were supplemented by 2 questionnaires designed for this study that examined participants' characteristics and their estimation of what information volunteers need before they meet a patient. RESULTS: Nine staff members and 7 volunteers participated in this study. Their ideas of collaboration could be grouped into 3 categories: (i) factual level of collaboration, (ii) relationship level of collaboration, and (iii) overall appraisal of collaboration (suggestions for improvement). CONCLUSION: Communication can be considered a key factor in successful collaboration between volunteers and staff. Because many patients in pediatric palliative care units are not able to communicate verbally, good information flow between volunteers and staff is crucial for ensuring quality patient care. Moreover, communication is the key to establishing a team philosophy by clarifying roles and building relationships between volunteers and staff.


Assuntos
Comportamento Cooperativo , Cuidados Paliativos/organização & administração , Equipe de Assistência ao Paciente/organização & administração , Voluntários/psicologia , Adulto , Criança , Comunicação , Feminino , Hospitais Pediátricos/normas , Humanos , Masculino , Papel Profissional
20.
Pain Med ; 19(1): 16-28, 2018 01 01.
Artigo em Inglês | MEDLINE | ID: mdl-28486647

RESUMO

Objective: Disabling pediatric chronic pain is accompanied by a significant burden to those affected and by high societal costs. Furthermore, it bears the risk of aggravation into adulthood. Studies have shown intensive interdisciplinary pain treatment to result in short-term positive effects on pain-related and psychological outcomes. In this study, we aimed to prove the stability of the long-term effects of intensive interdisciplinary pain treatment four years after treatment. Methods: This longitudinal observational study followed adolescents who had received intensive interdisciplinary pain treatment over four years. We defined a combined end point, overall improvement (pain intensity, pain-related disability, and school/work absence), and investigated three additional psychological outcome domains (anxiety, depression, pain catastrophizing). We also examined changes to economic parameters (health care utilization, subjective financial burden) and their relationship to patient improvement. Results: Similar patterns were observed for pain-related and psychological outcome domains, with data showing statistically and clinically significant reductions from admission to four-year follow-up. These positive effects were stable from one- to four-year follow-up. Approximately 60% of the adolescents showed an overall long-term improvement. Older age was found to be a risk factor for treatment failure. Economic parameters decreased statistically significantly, particularly for those with an overall improvement of the chronic pain disorder. Conclusions: The results of this study support the long-term effectiveness of intensive interdisciplinary pain treatment and indicate that it can interrupt pain chronification. Future research is warranted to investigate why some of the adolescents did not show improvement and to allow for a more individualized treatment.

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