Collaboration between doctors and nurses in children's cancer care: insights from a European project.

PURPOSE: It has long been recognised that effective cancer care is not possible without multi-professional team working. Collaboration and multi-professional working however are known to be less than straightforward. This project aimed to use a collaborative approach to explore and facilitate professional groups to work together more effectively in the field of children's cancer care. METHOD: Based on an earlier project in Italy, a three-year seminar series was organised involving both a doctor and nurse from 15 paediatric haematology/oncology units across Europe. Participants had to be able to speak English and commit to participate in annual seminars as well as the development and implementation of a local project to enhance doctor-nurse collaboration in their own unit. Appreciative Inquiry was the methodological approach used to address organisational as well as interpersonal change. RESULTS: Fifteen doctor-nurse teams were initially selected from a range of different countries, and 10 completed the project. Key outcomes reported include implementation and successful completion of projects, publication of the results achieved, participant satisfaction with improvements in collaboration. Feedback from participants would suggest that change had been implemented and possibly sustained. CONCLUSIONS: Active involvement and group support were required for success. More formal relationships needed to be activated with participating centres to guarantee support for those involved in implementing lasting change. A web-based resource to allow other programmes and centres to use the resources developed has been made available. The same approach, we believe, could be used to improve multi-professional working in the care of other childhood illnesses.

[Effects of residents' care needs classification (and misclassification) in nursing homes: the example of SOSIA classification]. / Effetti della classificazione (e mis-classificazione) del case- mix nella rappresentazione dei bisogni degli ospiti delle Re- sidenze Socio-Assistenziali per Anziani non Autosufficienti (RSA): l'esempio della Scheda di OSservazione Intermedia dell'Assistenza (SOSIA).

Since 2003, the Lombardy region has introduced a case-mix reimbursement system for nursing homes based on the SOSIA form which classifies residents into eight classes of frailty. In the present study the agreement between SOSIA classification and other well documented instruments, including Barthel Index, Mini Mental State Examination and Clinical Dementia Rating Scale is evaluated in 100 nursing home residents. Only 50% of residents with severe dementia have been recognized as seriously impaired when assessed with SOSIA form; since misclassification errors underestimate residents' care needs, they determine an insufficient reimbursement limiting nursing home possibility to offer care appropriate for the case-mix.

The EORTC clinical research coordinators group. European Organisation for Research and Treatment of Cancer.

The Clinical Research Coordinators Group (CRCG) is an umbrella organisation, compiled from four existing groups, namely the Oncology Nurses Group, the Data Management Group, the Radiation Technologists Group and the Early Clinical Studies Group Research Nurses. From the existing steering committees, a new board was formed and consists of two members per group. The CRCG will function as an independent group within the EORTC. The CRCG will create conditions and standards for implementing and conducting clinical protocols according to Good Clinical Practice.

Effect of prone positioning on the survival of patients with acute respiratory failure.

BACKGROUND: Although placing patients with acute respiratory failure in a prone (face down) position improves their oxygenation 60 to 70 percent of the time, the effect on survival is not known. METHODS: In a multicenter, randomized trial, we compared conventional treatment (in the supine position) of patients with acute lung injury or the acute respiratory distress syndrome with a predefined strategy of placing patients in a prone position for six or more hours daily for 10 days. We enrolled 304 patients, 152 in each group. RESULTS: The mortality rate was 23.0 percent during the 10-day study period, 49.3 percent at the time of discharge from the intensive care unit, and 60.5 percent at 6 months. The relative risk of death in the prone group as compared with the supine group was 0.84 at the end of the study period (95 percent confidence interval, 0.56 to 1.27), 1.05 at the time of discharge from the intensive care unit (95 percent confidence interval, 0.84 to 1.32), and 1.06 at six months (95 percent confidence interval, 0.88 to 1.28). During the study period the mean (+/-SD) increase in the ratio of the partial pressure of arterial oxygen to the fraction of inspired oxygen, measured each morning while patients were supine, was greater in the prone than the supine group (63.0+/-66.8 vs. 44.6+/-68.2, P=0.02). The incidence of complications related to positioning (such as pressure sores and accidental extubation) was similar in the two groups. CONCLUSIONS: Although placing patients with acute respiratory failure in a prone position improves their oxygenation, it does not improve survival.

Quality of life assessment and outcome of palliative care.

Quality of life (QoL) assessment is crucial for the evaluation of palliative care outcome. In this paper, our methodological approach was based on the creation of summary measures. Fifty-eight Palliative Care Units (PCUs) in Italy participated in the study. Each PCU randomly selected patients to be 'evaluated' among the consecutively 'registered' patients. At baseline (first visit) and each week the patient was asked to fill in a QoL questionnaire, the Therapy Impact Questionnaire (TIQ). Short-survivors (<7 days) were not included in the QoL study. The random sample of patients (n = 601) was highly representative of the general patient population cared for by the PCUs in Italy. The median survival was 37.9 days. We collected 3546 TIQ, 71.4 % completed by the patients. A Summary Measure Outcome score was calculated for 409 patients (81% of the patients included in the QoL study). The results of this national study showed that cooperative clinical research in palliative care is possible and QoL measures can be used to assess the outcome.

[PARI-ETLD (Therapeutic Approach and Nursing Research -- Epidemiology and Treatment of Decubitus Lesions]. / PARI-ETLD (Percorsi Assistenziali e Ricerca Infermieristica--Epidemiologia e Trattamento delle Lesioni da Decubito).

Pressure sores are one of the preferred nursing research topics but, in spite of the large number of studies, most questions related to the prevention and treatment of pressure sores remain unanswered. Well designed clinical trials and on sufficiently large samples are very rare and most treatments are routinely used even without a reliable evidence of their efficacy. The PARI-ETLD trial is the occasion for: a. evaluating the efficacy of the Fitostimoline, in the ri-epitelization of superficial pressure sores; b. starting a clinical trial conducted by nurses; c. building a multicentre nursing network for collecting data on the epidemiology of pressure sores and for evaluating the effectiveness of caring strategies and treatments. The protocol presented, with the data collection forms, is an example of feasibility of clinical trials in the nursing practice and offers examples of ways for overcoming common problems related to the implementation of clinical trials in everyday practice.

Terminal cancer patients and timing of referral to palliative care: a multicenter prospective cohort study. Italian Cooperative Research Group on Palliative Medicine.

This study describes the characteristics of a representative sample of terminally ill cancer patients at admission to Italian palliative care programs, the rate and reasons for discontinuation of care, and survival after enrollment. All Italian palliative care units (PCUs) specifically committed to palliative care were asked to consecutively register all new patients (n = 3901) between January and June, 1995. Fifty-eight of the 62 PCUs contacted by the Steering Committee completed the study. A random sample of 589 evaluable patients was prospectively selected from the 2667 eligible patients. Patients were mostly referred by a general practitioner (31.2%) or a specialist (42.1%). Most patients (84.7%) were followed until death. Seventy-seven discontinued care because of hospital admission (6.6%), change of residence (3.9%), refusal (1.7%), or improvement (0.8%). Median survival was 37.9 days; 14.3% of the patients died within 7 days, and 15.3% lived longer than 180 days. A statistically significant association between survival and gender, cancer type, setting of the first visit, and type of unit was observed. In Italy, as in other countries with different health systems, referral of cancer patients to palliative care tends to occur late in the course of the disease. This study suggests that the process of enrollment and the duration of patients' survival in palliative care, when studied in large unselected populations, can provide important information relevant to the care of terminally ill patients.

Home palliative care for terminal cancer patients: a survey on the final week of life.

As part of a large multicentre study on palliative care units in Italy, carried out between 1 January and 30 June 1995, we describe the place, circumstances and 'quality of death' of patients admitted to home palliative care. Data presented refer to 401 patients (67% of the 601 patients randomly selected for evaluation). Of these 401 patients 303 (76%) died at home. According to the Support Team Assessment Schedule (STAS) pain was fairly well controlled during the final week of life, while the control of other symptoms appeared to be less satisfactory. Invasive procedures were undertaken on 56% of patients, while in hospital the percentage increased to 75%. Twenty-five per cent of patients were totally pharmacologically sedated during the final 12 h of life. Neither the number of symptoms nor other factors were apparently associated with the decision to sedate the patient. The wide variations in the frequency of sedation among centres suggest that the choice to sedate the patient may reflect the provider's behaviour or services' policy rather than the patients' preference or needs. The definition of common criteria and guidelines for sedation of patients should be one of the topics for discussion among palliative care teams.

[Quality of life at the end of life. Analysis of the quality of life of oncologic patients treated with palliative care. Results of a multicenter observational study (staging)]. / La qualità di vita alla fine della vita. Analisi della qualità di vita di pazienti oncologici presi in carico per cure palliative. Risultati di uno studio osservazionale multicentrico ('staging').

Outcome in palliative care can be defined as patients' quality of life, quality of death and satisfaction with care. In an Italian multicentre prospectic study ('Staging') the quality of life of 571 palliative care patients with advanced cancer disease was assessed since the beginning of palliative care till the end of the study. We analyzed the tissue of quality of life missing data and the possibility to input the missing quality of life evaluation through the quality of life evaluation made by a proxy (doctor, nurse). The greatest functional impairment and an increasing level of some symptoms (fatigue, general malaise, emotional status) were observed during the last two weeks of life, whereas for other symptoms (gastro-intestinal, pain) some degree of control was possible. The quality of life analysis for palliative care patients should consider the different response of different quality of life components to the palliative care intervention.

Quality-of-life evaluation: when do terminal cancer patients and health-care providers agree?

A multicenter study involving six palliative care units in Italy was carried out on 159 terminal cancer patients seen at home or in hospital. The physician or the nurse completed independently from the patient the Therapy Impact Questionnaire (TIQ), a questionnaire devised for quality-of-life evaluation in terminal cancer patients. The patient's assessment was used as the valid reference measurement to compare with the health-care workers' evaluation to assess the validity of the latter. The results showed that percentages of agreement were higher for physical than for psychological and cognitive symptoms, and that there was a greater agreement on the absence rather than on the presence of a problem. None of the characteristics of the patient nor of the proxy showed any statistically significant relationship with the two disagreement indexes. The results suggest that caution is needed in the use of health-care workers as alternative sources of information regarding patients' quality of life.

[Evaluation of quality of life in oncology. Rationale and objectives of the first phase of the Quality of Life in Oncology project]. / La valutazione della qualità di vita in oncologia. Razionale ed obiettivi della prima fase del progetto QvOnc.

Although the subjective nature of quality of life perception is generally accepted, less attention has been paid to the procedure of selecting domains to be explored with questionnaires. In most cases domains are selected by panel of experts. It is not known whether these domains are relevant for the patients. Moreover, questionnaires developed in 'foreign' countries may not be culturally sound or relevant for patients living in different cultural background. In order to explore what really contributes to quality of life of Italian patients, a survey was conducted with the aim of identifying any dimension of quality of life, positively or negatively impacted on from the illness and therapies. A sample of two hundred and eighty eight cancer patients with previously specified characteristics (primary tumor, stage of disease and place of residence) were identified. After consenting to partecipate to the study, a staff member (a physician, a nurse or a psychologist) asked the patient to complete an open-ended questionnaire in the out-patient clinic or at home. This questionnaire, partially derived from a study by Padilla et al. made up of 5 questions: 'What does the term quality of life mean to you?', 'What contributes to a good quality of life?', 'What contributes to a poor or bad quality of life?', 'Which either physical or psychological symptom interferes with your quality of life?', 'State any positive or negative change in your quality of life, due to illness or treatments'. The first question was asked to explore the meaning of quality of life for the patient; the second and third question were asked to determine the contents of quality of life not health related; the fourth question and the diary provided information about quality of life contents related to his own experience of disease. Two hundred and forty eight questionnaires (86.1%) were obtained from 7 Cancer Centres participating to the study (Genova, Milano, Roma, Perugia, Napoli, Cagliari, Palermo). All the questionnaires were transcribed and subsequently broken down in phrases on a form that allowed coding. Three raters (a research nurse, an oncologist and a clinical psychologist) made the content analysis using as conceptual framework the list of domains identified by the Italian Society of Psycho-Oncology. The present study shows the possibility to define the content domain of quality of life attributes for cancer patients, using patients as experts.

Cognitive processes nurses and doctors use in the administration of PRN (at need) analgesic drugs.

The report is a descriptive, comparative study of the cognitive processes used by doctors and nurses when deciding whether or not to administer prn drugs to postoperative cancer patients. Simulations, together with the think aloud technique to provide verbal protocols was the method chosen. The theoretical framework chosen for the analysis was the information processing theory. Five doctors and 5 nurses, each with at least 5 years of working experience were interviewed. The interviews were transcribed so that a content analysis could be performed. The main findings were the following: doctors and nurses generated hypotheses early in the interview; the only statistically significant difference between the two groups was the wider use of theory and/or experience as a source of information by doctors. Although differences are not statistically significant, nurses appear to collect more information on and from the patient and more information on vital signs and symptoms other than pain than the doctors. Differences derived from analysis of the statements expressed by the subjects suggested that nurses pay more attention to the patient's psychological problems and that, while doctors' main concern was to make the right diagnosis, the nurses' main concern were patients' reactions and collaboration.

Expanding the role of the nurse in clinical trials: the nursing summaries.

In order to improve the overall quality of clinical trials, the role of the nurse should be expanded. The minimum requirement to facilitate nurses' participation and the optimal implementation of a clinical research protocol is to provide access to the clinical protocol document itself. However, given the high workload in an oncology unit, there is often little time for the staff to read the entire document. In addition, clinical protocols do not often provide detailed practical instructions for delivering treatment, observing patients, managing toxicities, and treating complications. A nursing summary of the medical protocol is a document that provides a short and easy-to-read selection of protocol-relevant information. It enables nurses to safely and more easily implement the research protocol and improve the care of patients in clinical trials. Master nursing summaries can be prepared centrally by the group responsible for the research protocol, while the unit/wards involved in the research can customize or adapt it to local needs. The potential benefit of implementing nursing summaries is overall improvement of the quality of the study by (a) increasing the reliability of nursing care regarding patients' safety, (b) standardizing monitoring and care of patients, (c) standardizing preventive measures, (d) proposing similar management of complications related to experimental treatments. Moreover, discussing nursing summaries may help evaluate workload related to research, allowing for better planning and allocation of resources.

[Psychological and social support for patients with mastectomies]. / Il supporto psicologico e sociale alle pazienti mastectomizzate.

Cancer patients need general emotional support but doctors and nurses often fail to recognise patients needs. This literature review aims at demonstrating the effect of social and psychosocial support on breast cancer women. All the article published from 1980 were reviewed. Psychotherapeutic counselling and psychosocial interventions were given by a range of people, including nurses, psychologists, psychiatrists and volunteers. Unfortunately the poor quality of the studies, which are often small and poorly controlled, does not allow to make a definitive statement on the impact of psychosocial interventions. The multiplicity of types of intervention and outcomes used make comparisons between studies difficult. However, when considered in conjunction with the evidence that informal social support from partners, friends and relatives is associated with better outcomes, this research highlights the importance of psychosocial factors for breast cancer patients.

[Evaluation of family satisfaction in pediatric oncology]. / La valutazione della soddisfazione delle famiglie in oncologia pediatrica.

The satisfaction for the care receveid following the diagnosis of acute linfoblastic leukemia in the Pediatric Division of the San Gerardo Hospital of Monza was explored with a questionnaire to the families of patients diagnosed from January 1984. 217 questionnaires were returned (59.2%); 67% were completed by both parents. Parents expressed overall a very high satisfaction for several areas of care: 93.8% for the information about diagnosis; 83% approved the use of the word "leukemia". Judgements on technical competence and communication skills of the health care professionals were analyzed separately for hospitalized and day-hospital patients, and for survivors and dead: results were highly positive for both groups. The expected higher of missing data for the questions related to satisfaction for communication on relapses, highlights the difficulty and the emotional load of the question. Data were discussed by the health care team as well as parents in order to obtain a feedback and practical suggestions for further improvement of care.