Structure, organisation and clinical outcomes in cancer patients of hospital support teams in Spain
- Albert Tuca-Rodriguez1,
- Xavier Gómez-Batiste2,3,
- Jose Espinosa-Rojas2,3,
- Marisa Martínez-Muñoz2,3,
- Nuria Codorniu4 and
- Josep Porta-Sales4
- 1Supportive and Palliative Care Unit, Cancer and Hematologic Diseases Institute, Hospital Clínic Barcelona, Barcelona University, Barcelona, Spain
- 2WHO Collaborating Centre for Public Health Palliative Care Programmes, Institut Català d'Oncologia, L'Hospitalet, Barcelona, Spain
- 3Chair of Palliative Care Department, Universitat de Vic, Barcelona, Spain
- 4Palliative Care Service, Institut Català d'Oncologia, L'Hospitalet, Barcelona, Spain
- Correspondence to Dr Albert Tuca, Supportive and Palliative Care Unit, Cancer and Hematologic Diseases Institute, Hospital Clínic de Barcelona, Barcelona University, c/Villarroel 170, Barcelona 08036, Spain;
Objectives To describe the structure, characteristics of patients and basic clinical outcomes in cancer patients receiving care from palliative care hospital support teams (HSTs) in Spain.
Method A multi-centre observational two phase study. Phase I: A descriptive survey of all HSTs in Spain. Phase II: A quasi-experimental prospective cohort study to describe the clinical outcomes, symptom severity and survival.
Results 60 HSTs in Spain met the inclusion criteria. All HSTs were multidisciplinary with wide experience (mean 6.8 years). HSTs coverage was 21.5% of all cancer deaths in Spain. A total number of 364 advanced cancer patients were included in the cohort study; 76% were classified as moderate or high complexity. Overall, 64% were male subjects and the most frequent primary cancer site was lung (26%). Half of the patients had no detailed information about cancer staging and only 19% knew their short-term prognosis. The mean length of intervention was 6.5 days (mean three visits per patient). Outcomes were: 34% deaths during the admission process; 38% were discharged home; and 28% were transferred to another medium-term-stay specialist unit. The main symptoms were pain (68%), dyspnoea (43%), vomiting (24%), anorexia (72%), asthenia (78%), insomnia (50%), anxiety (45%) and depression (35%). After the HSTs intervention, the symptom severity was significantly reduced (p<0.001) for all symptoms, except for weakness and anorexia. The mean survival from inclusion was 111 days.
Conclusions Palliative intervention of HSTs is characterised by being adjusted to patient needs and short duration. Their care was focused on the preterminal phase of cancer patients of moderate–high complexity.
Patients with chronic conditions with a limited life expectancy, or suffering from advanced/terminal conditions, are present in all health settings, ranging from community health, nursing homes, rehabilitation centres, mid-term/transitional or subacute care, and acute-bed hospitals (AH).1 Patients with advanced/terminal conditions account for 12%–35% of AH facilities.2 ,3 There are different levels and types of palliative care (PC) measures and services in AH.2 ,3 These may include some non-specialised programmes adopted by conventional services (training individual professionals) or multidisciplinary specialised PC services. The specialist services in PC range from hospital support teams (HSTs), specialist units, outpatient clinics or day-care hospitals, either stand-alone or, more frequently, combined within a PC department.2–6 HSTs are, by definition, multidisciplinary specialised services that act within the organisation of a general hospital in an advisory and supportive capacity to conventional services such as oncology, internal medicine, general surgery and other services with a high prevalence of advanced and terminally-ill patients. They usually function within a demand pattern of intervention, providing multidimensional assessments followed by therapeutic planning and patient management. Follow-up can range from an initial assessment and a therapy proposal with an occasional intervention to continuous shared care with the referral service, or to complete responsibility for the patient. The case management includes follow-up and liaison with PC resources in the community, based on agreements regarding shared responsibility in continuing care and emergency care.7 HSTs have since been implemented in most developed countries and, frequently, constitute the most frequent preliminary measure to developing a full PC service in an AH environment.8–10 HSTs have been implemented in most of the autonomous regions in Spain. In the latest version of the Directory of the Spanish Association for PC (SECPAL) of 201011 there were 90 HSTs registered in Spain. Different studies demonstrated the effectiveness of PC services in advanced cancer patients in Spain (symptom control, reduction of hospital stay, increase in the death-at-home and lower use of hospital emergency rooms).5 A recent systematic review, based on eight clinical trials and 32 quasi-experimental studies also showed that PC services, either in hospital or at home, significantly improved symptom control, anxiety and use of health resources.6 Based on these data, we considered it relevant to conduct a multi-centred study aimed at describing the current status of the HSTs in Spain (clinical and organisational outcomes).
The main aims are to describe the structure, patients’ characteristics, intervention pattern, organisational outputs and basic clinical outcomes of HSTs in Spain. A subsequent analysis focuses on the results of a longitudinal cohort study assessing the clinical outcomes and case-mix characteristics.
Material and methods
We report a two-phase multi-centred study (an observational survey and a cohort study).
Phase I: observational survey
A survey of team characteristics and activities was proposed to all HSTs registered in Spain. HSTs are hospital-based teams, multidisciplinary and specialised in PC, acting in an advisory and supportive capacity to conventional hospital services, providing a multidimensional assessment of patient's needs followed by a therapeutic planning and case management (Catalan and the National Spanish Strategy standards).11 ,12 The services were identified from SECPAL Directory.11 The data were confirmed by consultation with the regional health departments and a direct telephone call or email contact with the director of every HSTs included in SECPAL Directory. The inclusion criteria for HSTs were that they were multidisciplinary, based and acting within the hospital and providing care for advanced and terminally-ill cancer patients. Descriptive data were obtained by means a structured survey/questionnaire, which included information on the team's experience (start date of the activity at the hospital), and structure (numbers and types of professionals), the hospital characteristics (university hospital or regional district hospital), clinical activities and basic outcomes (total number of new patients in the previous year, duration of intervention, length of hospital stay and timing of intervention). Depending on the structure, the HSTs were classified10 ,12 as basic (1 doctor+1–2 nurses), complete (doctor+nurse(s)+part-time psychologist or social worker) or reference (doctor(s) +nurse(s)+full-time psychologist and social worker). Data from the survey were associated with demographic data (population, regional density) and with epidemiological data (incidence and mortality from cancer), provided by the National Statistics Institute of Spain. In this way, we analysed the number of teams per million inhabitants, the highest possible rate of death from cancer susceptible of being attended by each team and the actual coverage of care in relation to the incidence of cancer. In all cases, data were analysed regarding to global values of Spain and relative values for each autonomous region.
Phase II: cohort study
A longitudinal, prospective, cohort, quasi-experimental, prepost study of cancer patients was proposed to all HSTs that had participated in the initial survey. The inclusion of patients was consecutive over a 2-week period between October and December 2008. Clinical data were recorded during hospital admission and over a maximum follow-up of 6 months postdischarge from hospital. The inclusion criteria were age >18 years, diagnosis of advanced cancer, written informed consent and acceptance to maintain telephone contact over the follow-up period.
The characteristics of the cancer patients included age, gender, family–social status, primary cancer diagnosis, extent of the cancer, prognosis (using the Palliative Prognostic Score13) functional status (Barthel's scale; Spanish version14) and the Palliative Performance Status (PPS).15 Severity of pain, dyspnoea, nausea, anorexia, weakness, insomnia, anxiety and sadness were systematically recorded by means a Numeric Rating Scale (NRS) of 10 points, where 0 means no symptom and 10 the worst possible severity, on inclusion day and 2–3 days subsequently. Adequate symptom control was considered if the NRS score was ≤4/10.16 The prognosis of pain response was established using the Edmonton Staging System for Cancer Pain (ESSCP).17 Cognitive status was assessed using the Pfeiffer questionnaire (Spanish version18). Comorbidities were described using the Charlson score.19
The level of clinical complexity was determined by the team using several parameters including: difficult status (refractory physical or psychosocial symptoms), decision difficulty, uncertainty (prognostic, therapeutic) or foreseeable need for intensive supportive PC.20–22
The degree of awareness regarding diagnosis, and prognosis of cancer disease was evaluated in patients and their relatives using a categorical scale (complete, partial, absent, non-coherent and non-evaluable). Some ethical dilemmas previously typified were systematically registered (discrepancies in patient management into or between teams, divergent information, questionable indication for sedation, and request of euthanasia or assisted suicide). The clinical outcomes were recorded during admission (death or discharge date and destination) and during the 6-month follow-up (place of follow-up and survival). Follow-up was maintained by telephone interviews with the patient and primary carers, and conducted by a research nurse. The types and levels of intervention were classified in this study according to a previous consensus as basic support (initial assessment and case management at discharge from hospital), shared care (control every 48–72 h during hospitalisation) or intensive shared care (daily control during hospitalisation).
Descriptive data are presented as numbers and percentages for categorical variables and means with SDs, or medians with IQR, as appropriate for continuous variables. The t test was used to test the probability that the difference between the basal intensity of symptoms and at 48–72 h postintervention was not by chance. Significance level was set at 0.05. Multivariate analysis was based on Cox logistic regression. The Kaplan–Meier actuarial curve method was used in evaluating survival. All analyses were performed using SPSS V.15.
The study collected data from clinical practice and did not involve any additional risk to the patient. The individual's rights to privacy and confidentiality of data were preserved. Written informed consent was obtained from all participants and the study was approved by the Institution's Clinical Ethics Committee.
Phase I: observational survey
A total of 96 specialist PC services acting in acute hospitals were identified. Finally, 60 (62.5%) fulfilled the criteria for inclusion into the present study, and 36 (37.5%) were excluded due to their mixed activity devoted, mainly, to non-cancer patients or to home-care. All the HSTs approached accepted our invitation to participate in the survey of services (phase I), and 26 (43.3%) accepted to participate in the longitudinal cohort study of cancer patients (phase II).
The geographical distribution of the HSTs was heterogeneous among the 19 Spanish regions (table 1). Seven regions had no HSTs, and nearly 70% of HSTs were concentrated in four regions, 17 (28%) in Catalonia, 12 (20%) in Andalucia, 6 (10%) in Extremadura and 6 (10%) in Madrid. The total number of patients attended to during the year 2008 by these HSTs was 16 508; 14 829 (90%) of them were cancer patients, and 1672 (11%) were suffering from other chronic diseases. The mean number of patients attended to per HSTs/year was 275 (range 163–412). Based on epidemiological data,23 the mean coverage of HSTs in Spain was 14% of cancer deaths, which translates to 22% when considering only the regions which had HSTs at their disposal (table 2).
Of all HSTs, 50% were based in university hospitals and the rest in general district hospitals. In all, 17 HSTs (28%) were part of a comprehensive PC service in AH, and 52 (87%) had other PC resources in their health district (home teams and long-stay units). The mean period of time the HSTs had been in existence was 6.8 years (range: 1–20). Of the 60 participating teams, 22 (36%) were classified as basic, 19 (32%) as complete and 19 (32%) as reference. Overall, there were 282 healthcare professionals: 98 (34%) physicians, 112 (40%) nurses, 42 (15%) psychologists and 30 (11%) social workers.
Phase II: prospective, cohort study
Overall, 26 HSTs (43.3%) accepted our invitation to participate in the cohort study and a total number of 364 advanced cancer patients were included. The main characteristics of the cancer patients attended to are summarised in tables 3 and 4. Overall, 64% were male subjects, mean age was 69 years and the most frequent primary cancer site was lung (26%). In the last 4 weeks prior to inclusion, 161 (54%) patients had received treatment for the cancer: 111 (30%) with chemotherapy, 41 (11%) with radiotherapy and 9 (3%) with hormone therapy. The mean Palliative Prognostic Score was 7.4; 63% of patients had a Barthel index <55 and 72% a PPS score <40% (table 3). Cognitive status was preserved in 201 patients (55%) and 44 (12%) of patients had severely impaired cognitive status. The mean Charlson score for comorbidities was 7 (range 2–20). The mean number of symptoms was 4.1/patient with a mean severity of 6.0 in NRS.
Overall, 63% were married, 19% were widows or widowers, 10% single and 13% divorced. The mean number of children per patient was 2.1 (95% CI 0.5) and 46 (13%) were living alone. In the opinion of the attending physicians, patients were classified as high (32%), medium (44%) or low (24%) complexity as assessed using different previously agreed domains (symptom burden, refractory symptoms, psycho-social or existential distress, difficulty in decision-making process, prognostic or therapeutic uncertainty, foreseeable need for intensive supportive care).
In 74 patients (21%), the intervention was classified as basic support (one to two visits, mainly by nurses based on needs assessment, basic support and palliative resource advice, without any relevant changes in therapeutic planning); in 136 (38%), the intervention was classified as shared care (a visit every 48–72 h, important treatment changes, follow-up of response, intensive psycho-social support, palliative resource advice); and in 149 (42%), the intervention was classified as intensive intervention or complete responsibility (daily visit, substantial treatment changes, intensive intervention in decision-making and complete care responsibility in most cases).
Overall, 246 patients (68%) had pain; 160 (44%) were at stage II of the ESSCP. The percentage of patients achieving an adequate symptom control at 3 days postintervention (NRS≤4/10) was 77% for pain, 68% for dyspnoea, 88% for nausea, 77% for insomnia, 59% for anxiety and 45% for sadness. The NRS reduction was statistically significant (p<0.001) for pain, dyspnoea, nausea, insomnia, anxiety and sadness, and not significant for anorexia and weakness (table 5). The median length of stay of patients in hospital was 11 days (mean 13.1, SD 9.3). The median length of stay after the first intervention by the HSTs was 4 days (mean 6.5, SD 7.1), which represented 50% of hospital stay. The mean number of visits during the episode of HSTs intervention was 3/patient for attending doctors and 2/patient for attending nurses. The specific intervention by the social worker was required in 28% of cases and by the psychologist in 21%.
Overall, 131 patients (34%) died during the period of admission (19% in the referral service and 15% in the PC unit), 140 (38%) were discharged home and 105 (28%) were transferred to another specialist medium-term stay PC unit. Of the patients who were discharged home, 52 (14%) were treated by homecare teams and 41 (11%) by outpatient clinics (table 6). The median survival was 83 days (mean survival 111 days, SD 76).
At inclusion, 47% of patients knew their cancer diagnosis, 34% the disease stage and only 19% the prognosis, while 88% of primary carers reported complete disease information. Over 20% of patients preferred not to receive more information than they had already received.
An ethical dilemma was identified in 20% of cases, mainly discrepancies between teams or relatives regarding treatments or management of advanced information, and request for euthanasia or medical assisted suicide (2%). An advance directive document was drawn up in 16% of cases. In 31%, the indication for current or prospective sedation was discussed during the admission episode.
The data were stratified according the level of palliative complexity assigned to each case by the treating team (low, medium or high). The values which showed statistically significant differences between levels of palliative complexity were explored through a multivariate analysis. The variables that were associated in this analysis to a higher level of palliative complexity were: younger than 65 years; pain with an NRS≥5; difficult pain, classified as stage II of ESSCP; a number of symptoms ≥5 out of 8 recorded systematically; anxiety with an NRS≥5; depression with an NRS≥5; social risk factors; and ethical dilemma (table 7). A high level of palliative complexity was also associated (p<0.001) with an intensive shared care of HSTs (daily control during hospitalisation). Survival was lower (p<0.001) in those patients classified as high palliative complexity (table 8 and figure 1).
We consider that the national survey sample is fully representative because all HSTs registered in Spain participated in the study. In recent years, the total number of PC facilities in Spain has increased considerably (ratio of 1.3 HSTs per million). Despite this high degree of implementation, the rate of HSTs/million habitants in Spain is still lower than in other European countries. In fact and according to data from the European Association for PC in 2004, the countries who had more HSTs in Europe were Belgium, the UK and France (>5 HSTs/million). In the USA, more than 90% of hospitals of National Cancer Institute have professionals devoted specifically to PC.9–12 The commonest structure of the HSTs involve one physician and two full-time nurses together with part-time psychologists and social workers. The high proportion of advanced cancer patients is the commonest care pattern in PC services in Spain. The mean numbers of patients receiving attention/year are lower than that of other sources24 ,25 and with considerable differences between regions; the most active HSTs are based in the Canary Islands, Madrid and Barcelona. The majority of HSTs have other PC resources in the district, as evidenced by the high proportion of discharges to community specialised units. In this study conducted in 2008, the mean coverage was of the order of 22%, with a wide range between regions.
We consider that the sample of longitudinal cohort study is also representative due to participation of nearly half of all HSTs registered in Spain, and a total number of patients included who represent 3% of annual activity. Indeed, the similarity of data of this study compared with the cancer epidemiological data registered in Spain confirms the consistency of the study sample. All assessment tools used in this study are extensively validated in patients with advanced cancer.13–19
The longer survival in the present study (>3 months) compared with our previous surveys2 ,26 and the high rate of patients who were in the process of cancer treatments during the episode of HSTs intervention (50%) confirm the early pattern of intervention. In addition, the subsequent use of other PC resources postdischarge from hospital describes the position of the HSTs as the first PC specialised service to provide care for advanced cancer patients. The mean number of symptoms (mean >4/patient), the severity (mean NRS>6), and the high prevalence of refractory pain (ESSCP stage II), disability and cognitive impairment confirm the high complexity of patients in the setting of an acute hospital. The family–social status is concordant with population data in Spain.23
Following 2–3 days of treatment, severity reduction was achieved in all monitored symptoms, and was statistically significant in all symptoms except anorexia and weakness. The reduction was >50% of the basal score for pain, nausea and insomnia. Pain control (≤4/10) was achieved in nearly 80% study patients; 81% for patients ESSCP stage I and 77% for stage II. The prevalence and severity of symptoms and the effectiveness in symptom control by the Spanish HSTs is similar to other experiences and published data.26–36 The pattern of intervention of HSTs was based on an agreement of shared care with the referral service according to the specific complexity. More than a third of the patients assessed were considered as high complexity. Factors associated with higher levels of complexity are: young patients, a high symptom burden, difficult pain, psychological distress, social and family problems and emerging ethical dilemma. A higher complexity was also associated with the need to increase the intensity of shared cared with the referral service and with a lower survival. These analytical data are consistent with the empirical expert opinion recorded in the literature.4 ,7 ,21 ,22 A better understanding of factors influencing complexity can help in the design of predictive tools and in the identification of patterns of HSTs intervention according to specific needs of patients.
When asked about their diagnosis and prognosis, only half of the patients knew their diagnosis, a low proportion discussed their prognosis and 20% refused the offer of more detailed information. In contrast, the majority of carers had solicited complete information. That patients’ lack information regarding prognosis while the carers tend to access all information available reflects the Latin-Mediterranean pattern of information disclosure regarding end-of-life. Despite the very limited data regarding this issue in the literature, the patients’ low degree of prognostic information observed in the present study is similar to that observed in some studies conducted in Greece and Cuba.37 ,38 Of note was that only a fifth of patients had made their wills or written any advance directives. This, combined with the lack of information and disclosure, highlights the pattern of a paternalistic/low patient autonomy and intense family protection that is characteristic of Mediterranean culture, and which is substantially different from Northern European countries. The indication of palliative sedation was discussed in a third of patients. Euthanasia or assisted suicide was requested by 2% the patients at the first visit.
Data from this study can be very useful for the internal organisation of the PC in hospitals and for public health policies. The profile of HSTs is characterised by its high efficacy in controlling symptoms, and intervention mainly focused on the early stages of end-of-life process of patients with medium–high clinical complexity. Knowledge of the geographical distribution and density of the HST in Spain can help in developing public health policies more in line with the real needs of the population. Our next studies in this area will be addressed to explore the different profiles of palliative complexity and standards of intensity intervention of HSTs adjusted to the level of complexity.
Despite a careful process of inclusion of HSTs based on SECPAL Directory, it may be some professionals or teams specifically devoted to PC in Spain were not identified because they were not registered in this directory. The study only was focused on advanced cancer patients. This was because most of HSTs in Spain are devoted mainly to cancer patients (>90%) due to the specific development of public health policies. Currently, new strategies of public health system in Spain include PC programmes for patients without malignant conditions. Future studies in this field in our country should explore hospital-based PC in no-cancer patients.
Despite development of PC resources in Spain in recent years, the total number of HSTs is still lower than in most European countries. Spanish HSTs are multidisciplinary and provide care to advanced cancer patients of middle–high complexity. The intervention is short, of medium–high intensity and focused in a preterminal phase. Of note is the high effectiveness in symptom control. There is still a paternalistic pattern of disclosure in Spain regarding the disease, with a consequent low proportion of terminally-ill patients who draw an advance directive document. A third of patients die during the episode of HSTs intervention. The rest of the patients are discharged to other PC resources and this reflects a significant liaison role of the HSTs.
We appreciate the assistance provided by the staff of the Qualy End of Life Observatory at the Catalan Institute of Oncology (Barcelona). We thank Ms Sara Ela for help in editing the manuscript.
Contributors AT-R and XG-B: conceived the study design, interpreted study data and wrote the initial draft of the article; AT-R: also directed the process of acquisition, analysis and interpretation of data. JE-R: contributed to the study design and participated in the analysis and interpretation of data. MM-M and NC: contributed significantly to the acquisition and data analysis. JP-S: collaborated in the study design and interpretation of data. All authors reviewed the draft manuscript and approved the final version for publication.
Funding This project has been funded through a grant (P107/90624) from the Research Fund of the Ministry of Health and Consumption (Fondo de Investigaciones Sanitarias del Ministerio de Sanidad y Consumo). The study was coordinated by the Qualy End of Life Observatory at the Catalan Institute of Oncology (Barcelona).
Competing interest None.
Patient consent All patients signed an informed consent; this is specified in ethics chapter of manuscript. The sharing data and all patients' data were coded and protected according the present legal normative in Spain and this is specified in the ethics chapter.
Ethics approval The study received ethical approval by the Ethic Committee of Clinical Research of University Hospital of Bellvitge and Catalan Institute of Oncology, Barcelona University.
Provenance and peer review Not commissioned; externally peer reviewed.
- Received 24 August 2011.
- Accepted 16 August 2012.
- Published Online First 15 October 2012
- Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions