Evolución y resultados de la consulta externa de Cuidados paliativos en el Institut Català d'Oncologia:2001-2005

Objetivo: describir el proceso de citación en la consulta externa y sus principales resultados clínicos del Servicio de Cuidados Paliativos del Institut Català d'Oncología, para el periodo 2001-2005. Pacientes y métodos:pacientes consecutivos por los que se consultó y se visitaron en las consultar externas durante el periodo de estudio. Cada paciente por el que se consultó fue evaluado y programado para visita siguiendo un protocolo claramente definido. En cada visita se registraron variables demográficas y clínicas y se evaluaron el dolor, anorexia, estreñimiento, insomnio, debilidad, ansiedad y depresión. La eficacia en el control sintomático se analizó para aquellos pacientes que fueron capaces de hacer tres visitas consecutivas. Resultados: referente al proceso de citación fueron evaluables 2.385 pacientes. El 80% de los pacientes programados vinieron a visita y la mediana de tiempo entre la demanda y la visita fueron de 10 días. La evaluación del control sintomático fue posible para 553 pacientes, mostrando un significativo buen control de todos los síntomas con excepción de la astenia. El 55% de los pacientes requirieron opioides para el dolor, observándose un cambio en el patrón pasando de morfina a fentanilo TTS. Conclusiones: la carga asistencial, en nuestro centro, en la consulta externa de cuidados paliativos es alta. Los resultados del proceso de citación muestran un alto cumplimiento con un mínimo tiempo de espera entre la petición y la visita. Los resultados clínicos muestran un buen control global de los síntomas con excepción de la astenia. También se observa un cambio en el patrón de la perscripción de opioides. Este estudio ha de ser considerado como la línea basal para futuros estudios de nuestro centro o en otros de características similares

Offer and use of complementary and alternative medicine in hospitals of the French-speaking part of Switzerland.

Background: In 2004, complementary and alternative medicine (CAM) was offered by physicians in one third of Swiss hospitals. Since then, CAM health policy has considerably changed. This study aims at describing the present supply and use of CAM in hospitals of the French-speaking part of Switzerland, and qualitatively explores the characteristics of this supply. Methods: Between June 2011 and March 2012, a short questionnaire was sent to the medical directors of hospitals (N=46), asking them whether a CAM was offered, where and by whom. Then, a semi-directive interview was conducted with 10 CAM therapists. Results: Among 37 responses (return rate 80%), 19 medical directors indicated that their hospital offered at least one CAM and 18 reported that they did not. Acupuncture was the most frequently proposed CAM, followed by manual therapies, osteopathy and aromatherapy. The disciplines that offered CAM most frequently were rehabilitation, gynaecology- obstetrics, palliative care, psychiatry and anaesthesiology. In eight out of ten interviews, it appeared that the procedures for introducing a CAM in the hospital were not tightly supervised by the hospital but were mainly based on the goodwill of the therapists, rather than clinical/scientific evidence. Conclusion: Hospitals offering CAM in the French-speaking part of Switzerland seems to have risen since 2004. The selection of CAM to be offered in a hospital should be based on the same procedure of evaluation and validation as conventional care, and if their safety and efficiency is evidence-based, they should receive the same structural resources.

Psychopharmacology in supportive care of cancer: a review for the clinician. IV. Other psychotropic agents

Besides benzodiazepine, antidepressant and neuroleptic agents, all of which have established roles in supportive care, other psychotropic drugs deserve consideration in selected conditions affecting patients with advanced cancer. This article briefly reviews relevant aspects of miscellaneous psychotropics available for secondline treatment, including nonbenzodiazepine sedative, hypnotic and anxiolytic drugs, anaesthetic agents, stimulants, and analgesic adjuvants acting on the central nervous system. The proper use of such subsidiary psychotropic agents requires that both their specificities and the particular characteristics of palliative care patients are taken into account.

Treatment of brain metastases from non-small cell lung cancer with whole-brain radiotherapy (wbrt) in combination with gefitinib (gft) or temozolomide (tmz): a randomized multicenter phase ii trial of the swiss group of clinical cancer research (sakk #70/03)

BACKGROUND: Patients with BM rarely survive .6 months and are commonly excluded from clinical trials. We aimed at improving outcome by exploring 2 combined modality regimens with at the time novel agents for which single-agent activity had been shown. METHODS: NSCLC patients with multiple BM were randomized to WBRT (10 × 3 Gy) and either GFT 250 mg p.o. daily or TMZ 75 mg/m2 p.o. daily ×21/28 days, starting on Day 1 of RT and to be continued until PD. Primary endpoint was overall survival, a Simon's optimal 2-stage design was based on assumptions for the 3-month survival rate. Cognitive functioning and quality of life were also evaluated. RESULTS: Fifty-nine patients (36 M, 23 F; 9 after prior chemo) were included. Median age was 61 years (range 46-82), WHO PS was 0 in 18 patients, 1 in 31 patients, and 2 in 10 patients. All but 1 patients had extracranial disease; 33 of 43 (TMZ) and 15 of 16 (GFT) had adenocarcinoma histology. GFT arm was closed early after stage 1 analysis when the prespecified 3-mo survival rate threshold (66%) was not reached, causes of death were not GFT related. Main causes of death were PD in the CNS 24%, systemic 41%, both 8%, and toxicity 10% [intestinal perforation (2 patients), pneumonia (2), pulmonary emboli (1), pneumonitis NOS (1), seizure (1)]. We summarize here other patients' characteristics for the 2 trial arms: TMZ (n ¼ 43)/GFT (n ¼ 16); median treatment duration: 1.6 /1.8 mo; Grade 3-4 toxicity: lymphopenia 5 patients (12%)/0; fatigue 8 patients (19%)/2 patients (13%). Survival data for TMZ/GFT arms: 3-month survival rate: 58.1% (95% CI 42.1-73)/62.5% (95% CI 35- 85); median OS: 4.9 months (95% CI 2.5-5.6)/6.3 months (95% CI 2.2- 14.6); median PFS: 1.8 months (95% CI 1.5-1.8)/1.8 (95% CI 1.1-3.9); median time to neurol. progr.: 8.0 months (95% CI 2.2-X)/4.8 (95% CI 3.9-10.5). In a model to predict survival time including the variables' age, PS, number of BM, global QL, total MMSE score, and subjective cognitive function, none of the variables accounted for a significant improvement in survival time. CONCLUSIONS: The combinations of WBRT with GFT or TMZ were feasible. However, in this unselected patient population, survival remains poor and a high rate of complication was observed. Four patients died as a result of high-dose corticosteroids. Preliminary evaluation of cognitive function andQL failed to show significant improvement. Indications and patient selection for palliative treatment should be revisited and careful monitoring and supportive care is required. Research and progress for this frequent clinical situation is urgently needed. Trial partly supported by AstraZeneca (Switzerland), Essex Chemie (Switzerland) and Swiss Federal Government.

G-CSF-induced remission in two cases of acute myeloid leukemia.

We report on two elderly patients with newly diagnosed acute myeloid leukemia (AML) who were treated in palliative intention because of comorbidities and intermediate or poor risk cytogenetics. Both received G-CSF to reduce the risk of infection related to neutropenia. Interestingly, one patient achieved a full hematological remission and the other a peripheral remission with dramatic reduction of the bone marrow blast count. Although a direct therapeutic effect of myeloid growth factors seems to be unusual in AML, the use of G-CSF or GM-CSF may be recommended in patients such as elderly patients who are not suited for intensive chemotherapy.

Malignancy transformation of chronic osteomyelitis: description of 6 cases of Marjolin's ulcers

Marjolin's ulcer describes any malignant transformation of a chronic inflammatory lesion. In the majority of cases, a squamous cell carcinoma is diagnosed. Malignant transformation occurs usually after a long period of latency of chronic infection; it takes approximately 35 years on average. There are no typical clinical presentations, but several indirect signs may suggest the malignant transformation, such as increased or changed discharge, pathologic fracture, a slow-growing exophytic mass, or other suggestive signs of malignant transformation, which should prompt to biopsy for histological exam. The diagnosis of chronic osteomyelitis should not prevent to search for carcinoma. We present six patients with chronic osteomyelitis that developed well-differentiated squamous cell carcinoma. All patients were older than 50 years (mean 60 years, range 52-77 years). Five Marjolin's ulcers were located on the lower limb and one on the arm. The average time of the chronic discharging osteomyelitis before diagnosis of carcinoma ranged between 12 and 40 years. All patients were treated by amputation of the affected limb. None had metastasis, and one patient developed local recurrence and received palliative treatment. Our study emphasizes that Marjolin's ulcer should be considered as a rare but significant long-term complication of chronic osteomyelitis. The finding of microorganisms should not prevent from further diagnostic procedures by histopathological examination so that the correct surgical treatment can be performed.

Available evidence on re-irradiation with stereotactic ablative radiotherapy following high-dose previous thoracic radiotherapy for lung malignancies.

Patients affected with intra-thoracic recurrences of primary or secondary lung malignancies after a first course of definitive radiotherapy have limited therapeutic options, and they are often treated with a palliative intent. Re-irradiation with stereotactic ablative radiotherapy (SABR) represents an appealing approach, due to the optimized dose distribution that allows for high-dose delivery with better sparing of organs at risk. This strategy has the goal of long-term control and even cure. Aim of this review is to report and discuss published data on re-irradiation with SABR in terms of efficacy and toxicity. Results indicate that thoracic re-irradiation may offer satisfactory disease control, however the data on outcome and toxicity are derived from low quality retrospective studies, and results should be cautiously interpreted. As SABR may be associated with serious toxicity, attention should be paid for an accurate patients' selection.

Meaning in life and perceived quality of life in Switzerland: results of a representative survey in the German, French and Italian regions.

BACKGROUND: The concept of meaning in life (MIL) has become a central one in recent years, particularly in psycho-oncology and palliative care. The Schedule for Meaning in Life Evaluation (SMILE) has been developed to allow individuals to choose the life areas that they consider to be important for their own MIL. This approach relates to the "World Health Organisation" definition of quality of life (QOL) as an individual's perception of his own position. The aims of this study were (i) to assess MIL in a representative sample of the Swiss population according to the three linguistic regions and (ii) to evaluate whether MIL constitutes a significant determinant of the perceived QOL. METHODS: A telephone survey of the Swiss population, performed by a professional survey company, was conducted between November and December 2013. The interview included the SMILE, perceived QOL (0-10) and health status (1-5), and various sociodemographic variables. In the SMILE, an index of weighting (IOW, 20-100), an index of satisfaction (IOS, 0-100), and a total SMILE index (IOWS, 0-100) are calculated from the areas mentioned by the participants as providing MIL. RESULTS: Among the 6671 telephonic contacts realized, 1015 (15 %) participants completed the survey: 405 French, 400 German and 210 Italian participants. "Family" (80.2 %), "occupation/work" (51 %), and "social relations" (43.3 %) were the most cited MIL-relevant categories. Italian participants listed "health" more frequently than German and French participants (50.4 % vs 31.5 % and 24.8 % respectively, χ(2) = 12.229, p = .002). Age, gender, education, employment, and marital status significantly influenced either the MIL scores or the MIL-relevant categories. Linear regression analyses indicate that 24.3 % of the QOL variance (p = .000) is explained by health status (B = .609, IC = .490-.728, p = .000), MIL (B = .034, IC = .028-.041, p = .000) and socioeconomic status (F = 11.01, p = .000). CONCLUSION: The major finding of our analysis highlights the positive and significant influence of MIL on the perceived QOL in a representative sample of a general, multilingual and multicultural population. This result indicates that the existential dimension is not only determinant for QOL in some critical life events, as shown e.g. in psycho-oncology and palliative care, but also in everyday life.

Evolución de la enfermería y aparición de nuevos roles: Rol de la enfermera de Cuidados Paliativos

El papel de la enfermería se ha visto sometido a muchos cambios desde sus inicios hasta la actualidad. Cambios que han ayudado a que la profesión crezca y a que se fundamente en un cuerpo de conocimientos propios. Las enfermeras, inicialmente supeditadas al estamento médico, se encuentran actualmente con un nivel de formación que les permite desarrollar su rol autónomo. Las nuevas necesidades de cuidados, generadas por los cambios socio-demográficos, epidemiológicos y políticos, y la necesidad de dar respuesta a la demanda de la población, han generado una nueva perspectiva de los sistemas de salud. Los sistemas sanitarios tratan de adaptarse a las nuevas circunstancias generando modelos sanitarios eficaces y económicamente sostenibles, donde la enfermera tiene un papel primordial. Para poder dar la atención necesaria y profesional a todo este nuevo modelo asistencial se está procediendo cada vez más y de manera más activa, a la implantación de nuevos roles enfermeros (enfermera/o gestora/or de casos, enfermera de Enlace, etc.). Dentro de estos roles, destaca el de enfermera/o en Cuidados Paliativos (CP) por su gran complejidad e incluso desconocimiento, debido a que es un rol relativamente reciente. Dada la importancia para el colectivo enfermero de conocer y comprender los cambios que ha experimentado la enfermería, el presente trabajo pretende obtener una visión general de la evolución histórica de la enfermería y la aparición de nuevos roles, profundizando en el rol de CP. Para ello se realiza una revisión de la literatura. Palabras clave: Roles enfermería, cuidado, historia enfermería, evolución enfermería, cuidados paliativos, enfermería paliativa.

Hoitotiede

Hoitotieteen pääkokoelma sijaitsee Terveystieteiden osastokirjastossa, jossa painettu yleiskokoelma koostuu 790 nimekkeestä monografioita (painettujen monografiasarjojen osat ovat mukana luvussa). Hoitotiede-kokoelmasta yli 40 % (329 nimekettä) käsittelee käytännön hoitotyötä joko yleisesti (21 % / 168) tai jollakin erityisalueella (20 % /161). Erityisalueista suurimmat ovat geriatrinen hoitotyö (6 % / 42) ja psykiatrinen hoitotyö (4 % 35). Lähes kolmasosa kokoelmasta on yleisteoksia (27 % / 241) käsittäen mm. koulutusta (5 % /41), tutkimusta (11 % /86) ja hoitotyötä ammattina (6 % /51) tarkastelevaa kirjallisuutta. Hoitotyön etiikkaa, filosofiaa ja psykologiaa on kokoelmassa vajaa viidennes (17 % / 137). Hallintoa, esimiestehtäviä ja hoitotyön opetusta käsittelevää kirjallisuutta oli 5 % (43 nimekettä). Hoitotiede on käsikirjaston hyllyluokittelussa osana lääketiedettä. Hoitotieteen alueen nimekkeitä on käsikirjaston kokoelmasta 12 kappaletta, joista pääosa (8 kpl) oli sanakirjoja. Painettuja lehtiä on 8 nimekettä (Hoitotiede, Nursing Clinics of North America, Sairaanhoitaja, Terveydenhoitaja, Pro Terveys, Vård i Norden, Tutkiva hoitotyö, Spirium). Sähkökirjoja kokoelmassa on noin 50 nimekettä Ebrary-tietokannassa, 2 nimekettä NetLibrary-tietokannassa ja 2 nimekettä Taylor & Francis eBooks online -tietokannassa ja sähköisiä terveystieteen sanastoja 5 kpl (Hoidokki – hoitotyön asiasanasto, FinMeSH-asiasanasto, Medical Subject Headings (MeSH), Sosiaali- ja terveydenhuollon sanastoja (STAKES) ja Swedish MeSH). Verkkolehtiä kokoelmassa on noin 230 nimekettä (ISI Web of Knowledge Journal Citation Reports -tietokannan listaamista 36 nimekkeestä kokoelmissa on 86 % (31 nimekettä). Tietokantoja on 33, mm. lehtitietokanta Ebscohost Academic Search Premier ja viitetietokantoja mm. British Nursing Index, CINAHL (Ovid), EBM Reviews: Cochrane Database of Systematic Reviews, Medic, Medline (Ovid)ja PsycINFO (Ebsco).

Paediatric end-of-life care needs in Switzerland: current practices, and perspectives from parents and professionals. A study protocol.

AIM: To present a protocol for a multi-phase study about the current practice of end-of-life care in paediatric settings in Switzerland. BACKGROUND: In Switzerland, paediatric palliative care is usually provided by teams, who may not necessarily have specific training. There is a lack of systematic data about specific aspects of care at the end of a child's life, such as symptom management, involvement of parents in decision-making and family-centred care and experiences and needs of parents, and perspectives of healthcare professionals. DESIGN: This retrospective nationwide multicentre study, Paediatric End-of-LIfe CAre Needs in Switzerland (PELICAN), combines quantitative and qualitative methods of enquiry. METHODS: The PELICAN study consists of three observational parts, PELICAN I describes practices of end-of-life care (defined as the last 4 weeks of life) in the hospital and home care setting of children (0-18 years) who died in the years 2011-2012 due to a cardiac, neurological or oncological disease, or who died in the neonatal period. PELICAN II assesses the experiences and needs of parents during the end-of-life phase of their child. PELICAN III focuses on healthcare professionals and explores their perspectives concerning the provision of end-of-life care. CONCLUSION: This first study across Switzerland will provide comprehensive insight into the current end-of-life care in children with distinct diagnoses and the perspectives of affected parents and health professionals. The results may facilitate the development and implementation of programmes for end-of-life care in children across Switzerland, building on real experiences and needs. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT01983852.

Pediatric advance care planning from the perspective of health care professionals: a qualitative interview study.

BACKGROUND: Pediatric advance care planning differs from the adult setting in several aspects, including patients' diagnoses, minor age, and questionable capacity to consent. So far, research has largely neglected the professionals' perspective. AIM: We aimed to investigate the attitudes and needs of health care professionals with regard to pediatric advance care planning. DESIGN: This is a qualitative interview study with experts in pediatric end-of-life care. A qualitative content analysis was performed. SETTING/PARTICIPANTS: We conducted 17 semi-structured interviews with health care professionals caring for severely ill children/adolescents, from different professions, care settings, and institutions. RESULTS: Perceived problems with pediatric advance care planning relate to professionals' discomfort and uncertainty regarding end-of-life decisions and advance directives. Conflicts may arise between physicians and non-medical care providers because both avoid taking responsibility for treatment limitations according to a minor's advance directive. Nevertheless, pediatric advance care planning is perceived as helpful by providing an action plan for everyone and ensuring that patient/parent wishes are respected. Important requirements for pediatric advance care planning were identified as follows: repeated discussions and shared decision-making with the family, a qualified facilitator who ensures continuity throughout the whole process, multi-professional conferences, as well as professional education on advance care planning. CONCLUSION: Despite a perceived need for pediatric advance care planning, several barriers to its implementation were identified. The results remain to be verified in a larger cohort of health care professionals. Future research should focus on developing and testing strategies for overcoming the existing barriers.