Specialized pediatric palliative home care: a prospective evaluation.

Abstract Objectives: In Germany since 2007 children with advanced life-limiting diseases are eligible for Pediatric Palliative Home Care (PPHC), which is provided by newly established specialized PPHC teams. The objective of this study was to evaluate the acceptance and effectiveness of PPHC as perceived by the parents. Methods: Parents of children treated by the PPHC team based at the Munich University Hospital were eligible for this prospective nonrandomized study. The main topics of the two surveys (before and after involvement of the PPHC team) were the assessment of symptom control and quality of life (QoL) in children; and the parents' satisfaction with care, burden of patient care (Häusliche Pflegeskala, home care scale, HPS), anxiety and depression (Hospital Anxiety and Depression Scale, HADS), and QoL (Quality of Life in Life-Threatening Illness-Family Carer Version, QOLLTI-F). Results: Of 43 families newly admitted to PPHC between April 2011 and June 2012, 40 were included in the study. The median interval between the first and second interview was 8.0 weeks. The involvement of the PPHC team led to a significant improvement of children's symptoms and QoL (P<0.001) as perceived by the parents; and the parents' own QoL and burden relief significantly increased (QOLLTI-F, P<0.001; 7-point change on a 10-point scale), while their psychological distress and burden significantly decreased (HADS, P<0.001; HPS, P<0.001). Conclusions: The involvement of specialized PPHC appears to lead to a substantial improvement in QoL of children and their parents, as experienced by the parents, and to lower the burden of home care for the parents of severely ill children.

Effectiveness of a pediatric palliative home care team as experienced by parents and health care professionals.

OBJECTIVES: Little data are available on palliative home care for children. The objective of this study was to evaluate the effectiveness of a specialized pediatric palliative home care team (PPHCT) as experienced by parents and health care professionals (HCPs). METHODS: Parents and HCPs involved in the care of terminally ill children who died and whom the PPHCT was in charge of were surveyed with questionnaires focusing on satisfaction with the PPHCT, satisfaction with the course of the dying phase, and the development of anxiety, depression, and prolonged grief disorder. RESULTS: Forty-three parent dyads participated (return rate, 88%). Satisfaction with the PPHCT scored a median of 10 (numeric rating scale, 0-10). The child's death was predominantly experienced as very peaceful (median, 9); 71% died at home. According to parents, involvement of the PPHCT led to highly significant (p<0.001) improvements in the children's symptoms and quality of life, as well as in aspects of communication and administrative barrier reduction. Anxiety was detected in 25% of parents, depression in 19%, and prolonged grief disorder in 13%. HCPs (return rate, 83%) evaluated all investigated care domains (particularly cooperation/communication/family support) as being significantly improved (p<0.001). Thirty-five percent of HCPs felt uncertain concerning pediatric palliative care; 79% would welcome specific training opportunities. CONCLUSIONS: Involvement of a PPHCT is experienced as a substantial improvement of care by parents and HCPs. Coordination of palliative care during the last phase of life appears to be an important quality factor for the home care of dying children and their families.

Home care: a safe and attractive alternative to inpatient administration of intensive chemotherapies.

OBJECTIVE: The objective of this study was to evaluate feasibility, safety, perception, and costs of home care for the administration of intensive chemotherapies. METHODS: Patients receiving sequential chemotherapy in an inpatient setting, living within 30 km of the hospital, and having a relative to care for them were offered home care treatment. Chemotherapy was administered by a portable, programmable pump via an implantable catheter. The main endpoints were safety, patient's quality of life [Functional Living Index-Cancer (FLIC)], satisfaction of patients and relatives, and costs. RESULTS: Two hundred days of home care were analysed, representing a total of 46 treatment cycles of intensive chemotherapy in 17 patients. Two cycles were complicated by technical problems that required hospitalisation for a total of 5 days. Three major medical complications (heart failure, angina pectoris, and major allergic reaction) could be managed at home. Grades 1 and 2 nausea and vomiting occurring in 36% of patients could be treated at home. FLIC scores remained constant throughout the study. All patients rated home care as very satisfactory or satisfactory. Patient benefits of home care included increased comfort and freedom. Relatives acknowledged better tolerance and less asthenia of the patient. Home care resulted in a 53% cost benefit compared to hospital treatment (420 ± 120/day vs. 896 ± 165/day). CONCLUSION: Administration of intensive chemotherapy regimens at home was feasible and safe. Quality of life was not affected; satisfaction of patients and relatives was very high. A psychosocial benefit was observed for patients and relatives. Furthermore, a cost-benefit of home care compared to hospital treatment was demonstrated.

Frequency and determinants of urgent requests to home care agencies for community-dwelling elderly.

We analyzed a one-year case series and performed a longitudinal (4 month) cohort analysis of urgent requests made to home care agencies by and for their > or = 65 years old clients in order to estimate the frequency of unscheduled services delivered by home care agencies and to identify risk factors. All 40 home care agencies located in a Swiss region were included in the study and we registered 3,816 urgent requests (75/1,000 > or = 65 years residents per year). Among home care users, the presence of a urinary catheter, incontinence and the need for assistance in bathing were predictors of unscheduled services. Resources should be planned in order to help home care teams to handle unexpected, disruptive clusters of urgent requests that may compromise their scheduled activities.

Literature review on advance care planning of nursing home residents

Aim: Conduct a search and analytic review of literature regarding attributes of Advance Care Planning (ACP) and Advance Directive in order to identify the experiences and the best care strategies for older adults resident in nursing homes or long term institutions. Methodology: An extensive electronic search was undertaken in the following databases: Pubmed (via Ovid search), Cumulative Index of Nursing and Allied Health (CINAHL, via EBHOST), psychINFO and Cochrane. After analyzing and eliminating duplicates and professional's point of view (19), 144 titles were considered relevant: 28 opinion papers, 94 descriptive/qualitative studies or predictive studies, 17 experimental and five systematic reviews. Most of them were produced in North America and only 10 were in French. Results: With regard to European experiences, studies are scarce and further research could benefit from North American evidence. Contrary to Europe, nurses in North America play a major role in the process of care planning. The major findings were related to the poor efficacy of the completion of Advance Directives, even in presence of a substantial variety of implementation strategies. The evidence supports interventions that conceptualize ACP as a process, with an emphasis on the ascertainment of patients' values and beliefs and the necessity to include the family or loved ones from the beginning of the process in order to favor the expression and sharing of one's life perspectives and priorities in care. The most relevant findings were associated with the conceptualization of the ACP as a change in health behaviors which needs an involvement in different stages to overcome a variety of barriers. Conclusion: Rigorous research in ACP for the older adults in Swiss nursing homes that promote respect and dignity in this frail population is needed. How to best achieve patients and families goals should be the focus of nursing intervention and research in this domain.

Protocole pour l'évaluation et la prise en charge des plaies chroniques [Protocol for the evaluation and treatment of chronic wounds in the home care setting]

In 2001, it became evident that the domiciliary care nurses needed a tool to assist them in treating patients with chronic wounds. A protocol was therefore developed which could be used not only by the nurses but also by doctors and other health care professionals working in home care. As a parallel measure, a network of nurses specialised in wound care and available for advice and consultation was established.

Le Resident Assessment Instrument-Home-Care (RAI-Domicile): ce que le médecin de premier recours doit savoir [The Resident Assessment Instrument Home care: what primary care physician needs to know].

Following the decision of the Swiss Association for Home Care Services to adopt the Resident Assessment Instrument (RAI), the RAI-Home Care is gradually implemented in all home care services in Switzerland. Based on a comprehensive geriatric assessment, the RAI not only allows to establish an individualized plan of care, but also generates quality indicators and a case-mix classification system that helps financing and planning resources. This article describes the five steps of the RAI-Home Care process and discusses the strengths, future and limitations of the RAI.

Specialized home palliative care for adults and children: differences and similarities.

OBJECTIVE: To compare the provision of specialized home palliative care (SHPC) by the adult and pediatric SHPC teams at the Munich University Hospital. METHODS: All patients treated by one of the SHPC teams and their primary caregivers were eligible for the prospective nonrandomized survey. We analyzed the demographics, the underlying diseases, duration and impact of SHPC on symptom control and quality of life (QOL) as well as the caregivers' burden and QOL. RESULTS: Between April 2011 and June 2012, 100 adult and 43 pediatric patients were treated consecutively; 60 adults (median age, 67.5 years; 55% male) and 40 children (median age, 6 years, 57% male) were included in the study. Oncologic diseases were dominant only in the adult cohort (87 versus 25%, p<0.001). The median period of care was higher in the pediatric sample (11.8 versus 4.3 weeks; NS). Ninety-five percent of adult and 45% of pediatric patients died by the end of the study (p<0.001), 75% and 90% of them at home, respectively. The numbers of significant others directly affected by the patient's disease was higher in children (mean 3.4 versus 1.2; p<0.001). The QOL of adult patients and children (p<0.05 for both), as well as of their primary caregivers (p<0.001 for both) improved during SHPC, while the caregivers' burden was lowered (p<0.001 for both). CONCLUSIONS: Our results show important differences in several clinically relevant parameters between adults and children receiving SHPC. This should assist in the development of age-group specific SHPC concepts that effectively address the specific needs of each patient population.

[Place of volunteers in home care setting for taking care of individuals with Alzheimer's disease related dementia: Qualitative survey in a specialized unit] Place du bénévolat en EHPAD dans la prise en charge des personnes atteintes de la maladie d'Alzheimer ou démences apparentées : enquête qualitative dans une unité protégée.

Objectifs En EHPAD, selon les recommandations de la Haute Autorité de santé (HAS), la prise en charge non médicamenteuse des troubles psychocomportementaux associés à la maladie d'Alzheimer ou aux syndromes apparentés, implique une réorganisation, une formation spécifique du personnel et du temps. Se pose ici la question du rôle des bénévoles dans cette prise en charge. Matériels et méthodes Enquête descriptive à partir de questionnaires distribués aux différents intervenants (bénévoles, professionnels de santé et aidants familiaux) d'une unité protégée de l'EHPAD de la clinique du Diaconat (Colmar, France) et spécifiquement élaborés pour évaluer leur vécu de l'expérience de bénévolat dans la prise en charge des résidents souffrant d'une maladie d'Alzheimer ou d'un syndrome apparenté. Résultats Sur les 101 questionnaires qui ont été remplis, 85,7 % des aidants, 60 % des bénévoles et 42,1 % des professionnels constataient des bénéfices pour eux-mêmes. Les professionnels et les aidants avaient confiance dans l'intervention des bénévoles. Cependant, les bénévoles semblaient manquer de compétence pour le soutien des aidants et dans les techniques de communication avec les résidents. Les points essentiels pour permettre un fonctionnement harmonieux entre les différents intervenants étaient de bien définir préalablement le rôle de bénévoles et d'en informer les autres intervenants, de former les bénévoles à ce rôle et de favoriser la communication entre les bénévoles et les professionnels. Conclusion Cette enquête montre que les bénévoles ont une place aux côtés des équipes soignantes pour participer à la prise en charge non médicamenteuse des personnes atteintes de maladie d'Alzheimer ou syndromes apparentés. Ils ont une position singulière et jouent un rôle complémentaire de celui des soignants et des aidants. Objectives According to the recommendation of the French High Authority of Health (HAS), the non-pharmaceutical management of psycho-behavioural disorders associated with Alzheimer's disease or related disorders in a nursing home, involves reorganization an specific training for staff members and time. This raises the question of the role of volunteering in this approach. Materials and methods A descriptive survey using questionnaires distributed to various stakeholders (volunteers, healthcare professionals and caregivers) of a protected unit of the nursing home of the Diaconat clinic (Colmar, France) and specifically designed to assess their experience of the volunteering in supporting residents suffering from Alzheimer's diseases or related disorders. Results Of the 101 questionnaires that were filled in, 85.7% of caregivers, 60% of volunteers and 42.1% of professionals recorded benefits for themselves. Professionals and informal carers had confidence in the intervention of volunteers. However, volunteers seemed to lack skills to support informal caregivers and specific knowledge about the technique of communicating with residents. The key points to favor harmonious collaborations between the different stakeholders were: to properly define the role of volunteers and to inform other stakeholders about this role previously, and to specifically educate themselves in this task and to promote communication between volunteers and all other professionals. Conclusion This study shows that volunteers have a place alongside medical teams to participate in the non-pharmaceutical treatment for people with Alzheimer's disease or related syndromes. They have a unique position and play a complementary role to that of carers and informal caregivers.

Nursing intervention versus usual care to improve delirium among home-dwelling older adults receiving homecare after hospitalization: feasibility and acceptability of a Randomized Controlled Trail.

BACKGROUND: Delirium is an acute cognitive impairment among older hospitalized patients. It can persist until discharge and for months after that. Despite proof that evidence-based nursing interventions are effective in preventing delirium in acute hospitals, interventions among home-dwelling older patients is lacking. The aim was to assess feasibility and acceptability of a nursing intervention designed to detect and reduce delirium in older adults after discharge from hospital. METHODS: Randomized clinical pilot trial with a before/after design was used. One hundred and three older adults were recruited in a home healthcare service in French-speaking Switzerland and randomized into an experimental group (EG, n = 51) and a control group (CG, n = 52). The CG received usual homecare. The EG received usual homecare plus five additional nursing interventions at 48 and 72 h and at 7, 14 and 21 days after discharge. These interventions were tailored for detecting and reducing delirium and were conducted by a geriatric clinical nurse (GCN). All patients were monitored at the start of the study (M1) and throughout the month for symptoms of delirium (M2). This was documented in patients' records after usual homecare using the Confusion Assessment Method (CAM). At one month (M2), symptoms of delirium were measured using the CAM, cognitive status was measured using the Mini-Mental State Examination (MMSE), and functional status was measured using Katz and Lawton Index of activities of daily living (ADL/IADL). At the end of the study, participants in the EG and homecare nurses were interviewed about the acceptability of the nursing interventions and the study itself. RESULTS: Feasibility and acceptability indicators reported excellent results. Recruitment, retention, randomization, and other procedures were efficient, although some potentially issues were identified. Participants and nurses considered organizational procedures, data collection, intervention content, the dose-effect of the interventions, and methodology all to be feasible. Duration, patient adherence and fidelity were judged acceptable. Nurses, participants and informal caregivers were satisfied with the relevance and safety of the interventions. CONCLUSIONS: Nursing interventions to detect/improve delirium at home are feasible and acceptable. These results confirm that developing a large-scale randomized controlled trial would be appropriate. TRIAL REGESTRATION: ISRCTN registry no: 16103589 - 19 February 2016.

Listening to parents: The role of symptom perception in pediatric palliative home care.

OBJECTIVE: This study analyzes symptom perception by parents and healthcare professionals and the quality of symptom management in a pediatric palliative home care setting and identifies which factors contribute to a high quality of palliative and end-of-life care for children. METHODS: In this retrospective, cross-sectional study, parents were surveyed at the earliest three months after their child's death. All children were cared for by a specialized home pediatric palliative care team that provides a 24/7 medical on-call service. Questionnaires assessed symptom prevalence and intensity during the child's last month of life as perceived by parents, symptom perception, and treatment by medical staff. The responses were correlated with essential palliative care outcome measures (e.g., satisfaction with the care provided, quality-of-life of affected children and parents, and peacefulness of the dying phase). RESULTS: Thirty-eight parent dyads participated (return rate 84%; 35% oncological disorders). According to parental report, dyspnea (61%) and pain (58%) were the dominant symptoms with an overall high symptom load (83%). Pain, agitation, and seizures could be treated more successfully than other symptoms. Successful symptom perception was achieved in most cases and predicted the quality of symptom treatment (R 2, 0.612). Concordant assessment of symptom severity between parents and healthcare professionals (HCPs) improved the satisfaction with the care provided (p = 0.037) as well as the parental quality-of-life (p = 0.041). Even in cases with unsuccessful symptom control, parents were very satisfied with the SHPPC team's care (median 10; numeric rating scale 0-10) and rated the child's death as highly peaceful (median 9). Significance of the results: The quality and the concordance of symptom perception between parents and HCPs essentially influence parental quality-of-life as well as parental satisfaction and constitute a predictive factor for the quality of symptom treatment and palliative care.

Bioluminescent sensor proteins for point-of-care therapeutic drug monitoring.

For many drugs, finding the balance between efficacy and toxicity requires monitoring their concentrations in the patient's blood. Quantifying drug levels at the bedside or at home would have advantages in terms of therapeutic outcome and convenience, but current techniques require the setting of a diagnostic laboratory. We have developed semisynthetic bioluminescent sensors that permit precise measurements of drug concentrations in patient samples by spotting minimal volumes on paper and recording the signal using a simple point-and-shoot camera. Our sensors have a modular design consisting of a protein-based and a synthetic part and can be engineered to selectively recognize a wide range of drugs, including immunosuppressants, antiepileptics, anticancer agents and antiarrhythmics. This low-cost point-of-care method could make therapies safer, increase the convenience of doctors and patients and make therapeutic drug monitoring available in regions with poor infrastructure.