Methodological guidelines for preparing a structured therapeutic education program: From design to evaluation. / Guía metodológica para la elaboración de un programa estructurado de educación terapéutica: del diseño a la evaluación.

BACKGROUND AND OBJECTIVE: Therapeutic patient education (TPE) is effective and essential in the context of the growing prevalence of chronic diseases, in which tools are needed for planning structured programs. The objective of this project was to develop guidelines for designing and assessing a TPE program. METHODS: 1) We assembled a multidisciplinary group of 8 leaders in TPE, chronicity, quality and safety from the hospital and the university. 2) We conducted an exhaustive review of the scientific literature on the planning of TPE programs directed at chronically ill patients, their relatives and caregivers. 3) The final text underwent comments and suggestions by participants from the hospital and primary care centre during a course on information and TPE methodology. The recommendations were unanimously agreed upon by the writing group. RESULTS: We obtained a standardised work procedure targeted at professionals involved in planning TPE programs, based on international recommendations. The document is structured into sections: a) Definition of the health problem and analysis of the situation; b) Program structure (human resources and materials); objectives (health-related, behaviour-related and educational) and methodology; c) Path the patient and family/caregiver follows in the program; and d) Assessment and indicators. The assessment of the procedure, in the framework of the methodology courses, was favourable. CONCLUSIONS: The methodology provided by this document serves as an instrument for the standardised and systematic planning of educational programs and unifies the criteria in their drafting. However, the document needs to be adapted to the condition and population to which each program is directed.

Analysis of the quality of patient therapeutic education and information in a high complexity reference hospital.

BACKGROUND AND OBJECTIVES: The application and monitoring of quality criteria in information and therapeutic patient education can identify areas to improve care. The objectives of this study were: (1) To analyze the characteristics of patient information materials, educational activities, and self-management programs, and (2) to determine health care provider (HCP) proposals on therapeutic patient education. MATERIALS AND METHODS: Using a cross-sectional study, an online questionnaire was sent to hospital departments in a high complexity reference hospital from September to December 2013 to record: (a) information materials, (b) patient educational activities, and self-management program characteristics, (c) HCP proposals. The materials were analyzed using Health Promoting Hospitals (HPH) recommendations. RESULTS: (1) An analysis was performed on 258 materials (leaflets [54%]) for chronic patients (86%), acute patients (7%), and the general population (7%). More than half (55%) lacked the authors, and 43% the year issued, and 69% followed HPH recommendations. (2) An evaluation was made of 70 educational activities and 37 self-management programs addressed to patients/relatives with diabetes/obesity, musculoskeletal disorders, COPD/asthma, pelvic-floor disorders, transplantation, bowel-inflammation/liver disease, hypertension, cancer, heart failure, acquired immune deficiency syndrome, chronic renal insufficiency, splenectomy, anticoagulation and older-patient dependence. The structure, process and outcome evaluation varied. (3) HCP proposals included: standardization of materials criteria, web accessibility, list of accredited websites, cross-sectional use, and HCP training in self-management education. CONCLUSIONS: The online questionnaire showed the weaknesses and strengths of patient information and education, and can be used to monitor their quantity and quality. These results help in the definition of a useful model to improve patient information and education policies.

Spanish and Catalan translation, cultural adaptation and validation of the Picker Patient Experience Questionnaire-15.

OBJECTIVE: To develop and test a culturally adapted core set of questions to measure patients' experience after in-patient care. MATERIAL AND METHODS: Following the methodology recommended by international guides, a basic set of patient experience questions, selected from Picker Institute Europe questionnaires (originally in English), was translated to Spanish and Catalan. Acceptability, construct validity and reliability of the adapted questionnaire were assessed via a cross-sectional validation study. The inclusion criteria were patients aged >18 years, discharged within one week to one month prior to questionnaire sending and whose email was available. Day cases, emergency department patients and deaths were excluded. Invitations were sent by email (N=876) and questionnaire was fulfilled through an online platform. An automatic reminder was sent 5 days later to non-respondents. RESULTS: A questionnaire, in Spanish and Catalan, with adequate conceptual and linguistic equivalence was obtained. Response rate was 44.4% (389 responses). The correlation matrix was factorable. Four factors were extracted with Parallel Analysis, which explained 43% of the total variance. First factor: information and communication received during discharge. Second factor: low sensitivity attitudes of professionals. Third factor: assessment of communication of medical and nursing staff. Fourth factor: global items. The value of the Cronbach alpha was 0.84, showing a high internal consistency. CONCLUSIONS: The obtained experience patient questionnaire, in Spanish and Catalan, shows good results in the psychometric properties evaluated and could be a useful tool to identify opportunities for health care improvement in our context. Email could become a feasible tool for greater patient participation in everything that concerns his health.

Place of death in patients with amyotrophic lateral sclerosis.

UNLABELLED: Amyotrophic lateral sclerosis (ALS) is a degenerative neurological disorder that affects motor neurons. Involvement of respiratory muscles causes the failure of the ventilator pump with more or less significant bulbar troubles. ALS course is highly variable but, in most cases, this disease entails a very significant burden for patients and caregivers, especially in the end-of-life period. In order to analyze the characteristics of ALS patients who die at home (DH) and in hospital (DHosp) and to study the variability of clinical practice, a retrospective medical records analysis was performed (n=77 from five hospitals). VARIABLES: time elapsed since the onset of symptoms and the beginning of ventilation, characteristics of ventilation (device, mask and hours/day), and support devices and procedures. RESULTS: In all, 14% of patients were ventilated by tracheotomy. From the analysis, 57% of patients were of DH. Mean time since the onset of symptoms was 35.93±25.89 months, significantly shorter in patients who DHosp (29.28±19.69 months) than DH (41.12±29.04) (p=0.044). The percentage of patients with facial ventilation is higher in DHosp (11.4% vs 39.4%, p<0.005). DH or not is related to a set of elements in which health resources, physician attitudes and support resources in the community play a role in the decision-making process. There is great variability between countries and between hospitals in the same country. Given the variability of circumstances in each territory, the place of death in ALS might not be the most important element; more important are the conditions under which the process unfolds.

A breath of Twitter.

The use of online social networks among physicians and physicians-in-training is similar to that of the general population. Patients also use online social networks to communicate and exchange information with other patients who have similar conditions and with health professionals, something which is not free from ethical problems. In any case, online social networks have penetrated clinical practice irreversibly. Twitter is an effective social communication tool used for many different purposes. It has been massively adopted in many sectors including healthcare. The article explores its usefulness for respiratory physicians, focusing in four areas: 1) Access to generic and scientific information, 2) Contact with the professional community, 3) Public health, 4) Relationship with patients.

Discharge planning and home care for end-stage COPD patients.

Discharge support for the most seriously ill chronic obstructive pulmonary disease (COPD) patients is a key issue in minimising the impact of the acute episode and preventing future relapses. Alternatives to hospitalisation are crucial in the cost minimisation of COPD care. However, besides efficiency, there are clinical reasons for promoting alternatives to conventional hospital admission. Hospital stay itself conveys a risk to patients. The discharge process is a key element in the healthcare continuum. Hospital at home is a safe alternative to hospital admission, but it is not the only means of supporting discharge. Some home care schedules, mainly supported by nurses, have been proven to be good alternatives. Home care is also useful in the prevention of hospital admission. Integrated care is a comprehensive response to the needs of severely affected COPD patients achieved through models of shared care utilising all relevant health providers and promoting self-management. The framework for integrated care is the so-called chronic care model, centred on the promotion of self-management, the holistic appraisal of the patient, the most appropriate design of healthcare delivery responding effectively to the needs of the patient and a good system of shared and accessible information.

Home mechanical ventilation patients: a retrospective survey to identify level of burden in real life.

BACKGROUND AND AIM: Home care for patients under home mechanical ventilation (HMV) may cause dramatic physical and economic burden in addition to the burden of time on family/caregivers and health care service (HCS) with difficult resource allocation decision-making. Our aims were: 1. To identify conditions causing major care burden in managing HMV patients according to family and payer's perspectives related to characteristics of the disease, dependency and accessibility; and 2. To find, if any, differences among diseases. METHODS: A questionnaire was sent to eight pulmonary centres to identify factors connected with the greater care burden. Retrospective data of 792 patients still alive and in HMV was reviewed. RESULTS: Compared to neuromuscular disorders (NM) and chest wall deformities, the COPD group have presented a statistically greater number of hospitalisations/yr (1.37 +/- 0.77), greater length of stay (13 +/- 10 days), higher number of outpatient visits/yr (2.55 +/- 1.73) or emergency room accesses/yr (0.74 +/- 1.08). Patients with NM diseases need more home care. The prevalence of one, two and three among five selected burden criteria (needs of MV > 12 hrs/day, tracheotomy, high dependency, distance from hospital, frequent hospitalisations) was respectively 19%, 30% and 33% of the cases; the NM was the group most represented. CONCLUSIONS: In HMV patients: 1. underlying disease, level of their dependency, hours spent under MV, presence of tracheotomy, home distance from hospital, hospital accesses are the causes of major care burden; and 2. as a novelty we have demonstrated that more than fifty percent of them present two or three contemporaneous criteria selected as care burden, being NM and COPD patients the most representative group necessitating of family's and HCS's care respectively.

Noninvasive positive pressure ventilation prevents postoperative pulmonary complications in chronic ventilators users.

OBJECTIVE: To evaluate the postoperative pulmonary complications and the long-term impact on pulmonary function of different surgical procedures with general anaesthesia in chronic respiratory failure (CRF) patients who were using noninvasive positive pressure ventilation (NPPV). DESIGN: We retrospectively studied 20 stable patients on NPPV for CRF secondary to: kyphoscoliosis (eight), morbid obesity (six), thoracoplasty (four), neuromuscular diseases (two), who underwent surgical procedures with general anaesthesia, between January 1998 and December 2003. MATERIAL AND METHODS: The variables studied were: type of surgery, hours of orotracheal intubation, hours of stay in the postsurgical reanimation unit (PRU), postoperative pulmonary complications and days of hospital stay. These results were compared with those obtained in patients without respiratory pathology and who were submitted to the same type of surgical interventions during the study period. All patients were tested for: arterial blood gases, forced vital capacity (FVC) and forced expiratory volume in 1s (FVE1). These tests were carried out both prior to surgical intervention and 12 months after this intervention, and the use of medical assistance resources the year prior to and the year after the surgical intervention were also analysed. RESULTS: Sixteen patients were using NPPV at home at the time of the intervention and four patients were adapted to NPPV before surgery. The surgical procedures were: gastroplasty: six; mastectomy: five; septoplasty: three; hip prosthesis: two; cholecystectomy: one; Gasserian ganglion thermocoagulation: one; hysterectomy: one; and endoscopic retrograde cholangiopancreatography (ERCP): one. The mean postoperative intubation time was 3.8+/-3.2h, and only one patient remained intubated for more than 12h. The mean stay in the PRU was 19+/-9h (vs 19+/-6h in the general population, p>0.05). The days of hospital stay for the different pathologies were in the majority of cases greater than in the general population. We did not find significant differences on comparing the arterial blood gases, in pulmonary function or in use of assistance resources between the year previous to and the year following the surgical intervention. CONCLUSIONS: In high-risk patients with chronic respiratory failure as a consequence of a restrictive lung pathology, NPPV can play an important role to confront surgical procedure with general anaesthesia with greater security. To obtain these results, it was fundamental to coordinate between the Pulmonary Services and the Anaesthesia Services as well as to follow up jointly in the PRU.

Performance of mechanical ventilators at the patient's home: a multicentre quality control study.

BACKGROUND: Quality control procedures vary considerably among the providers of equipment for home mechanical ventilation (HMV). METHODS: A multicentre quality control survey of HMV was performed at the home of 300 patients included in the HMV programmes of four hospitals in Barcelona. It consisted of three steps: (1) the prescribed ventilation settings, the actual settings in the ventilator control panel, and the actual performance of the ventilator measured at home were compared; (2) the different ventilator alarms were tested; and (3) the effect of differences between the prescribed settings and the actual performance of the ventilator on non-programmed readmissions of the patient was determined. RESULTS: Considerable differences were found between actual, set, and prescribed values of ventilator variables; these differences were similar in volume and pressure preset ventilators. The percentage of patients with a discrepancy between the prescribed and actual measured main ventilator variable (minute ventilation or inspiratory pressure) of more than 20% and 30% was 13% and 4%, respectively. The number of ventilators with built in alarms for power off, disconnection, or obstruction was 225, 280 and 157, respectively. These alarms did not work in two (0.9%), 52 (18.6%) and eight (5.1%) ventilators, respectively. The number of non-programmed hospital readmissions in the year before the study did not correlate with the index of ventilator error. CONCLUSIONS: This study illustrates the current limitations of the quality control of HMV and suggests that improvements should be made to ensure adequate ventilator settings and correct ventilator performance and ventilator alarm operation.

Quality control of equipment in home mechanical ventilation: a European survey.

Quality control of the equipment used in home mechanical ventilation is necessary in order to ensure that patients safely and accurately receive the prescribed ventilatory support. The aim of this study was to carry out a survey on the quality-control procedures in different centres and countries. The survey was carried out in the context of a European Commission Concerted Action covering 16 European countries. The study was extensive and detailed, involving 326 centres, which provided home ventilation to >20,000 patients. The survey showed that: 1) ventilator servicing was mainly carried out by external companies (62% of centres), with a servicing frequency ranging 3-12 months; 2) interaction between servicing companies and prescribers was limited (only 61% of centres were always informed of major incidents); 3) participation of centres in equipment quality control was poor (only 56% of centres assessed that patients/caregivers correctly cleaned/maintained the ventilator); and 4) centres were insufficiently aware of vigilance systems (only 23% of centres). Moreover, the data showed considerable inter- and intra-country differences. The size of the centre was an important determinant of many of these quality-control aspects. This survey provides information that will enable the European Commission Concerted Action to formulate recommendations on procedures for home-ventilator quality control.

Costes sanitarios de la enfermedad pulmonarobstructiva crónica (EPOC) / The public health cost of chronic obstructive pulmonary disease

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Enfermedad pulmonar obstructiva crónica (EPOC): visión global y continuidad de cuidados / Chronic obstructive pulmonary disease (COPD): global estrategy and care continuity

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Toma de decisiones en el manejo clínico de los pacientescon esclerosis lateral amiotrófica / Decision making in the clinical management of patients with lateral amyotrophic sclerosis

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Home hospitalisation of exacerbated chronic obstructive pulmonary disease patients.

It was postulated that home hospitalisation (HH) of selected chronic obstructive pulmonary disease (COPD) exacerbations admitted at the emergency room (ER) could facilitate a better outcome than conventional hospitalisation. To this end, 222 COPD patients (3.2% female; 71+/-10 yrs (mean+/-SD)) were randomly assigned to HH (n=121) or conventional care (n=101). During HH, integrated care was delivered by a specialised nurse with the patient's free-phone access to the nurse ensured for an 8-week follow-up period. Mortality (HH: 4.1%; controls: 6.9%) and hospital readmissions (HH: 0.24+/-0.57 controls: 0.38+/-0.70) were similar in both groups. However, at the end of the follow-up period, HH patients showed: 1) a lower rate of ER visits (0.13+/-0.43 versus 0.31+/-0.62); and 2) a noticeable improvement of quality of life (delta St George's Respiratory Questionnaire (SGRQ), -6.9 versus -2.4). Furthermore, a higher percentage of patients had a better knowledge of the disease (58% versus 27%), a better self-management of their condition (81% versus 48%), and the patient's satisfaction was greater. The average overall direct cost per HH patient was 62% of the costs of conventional care, essentially due to fewer days of inpatient hospitalisation (1.7+/-2.3 versus 4.2+/-4.1 days). A comprehensive home care intervention in selected chronic obstructive pulmonary disease exacerbations appears as cost effective. The home hospitalisation intervention generates better outcomes at lower costs than conventional care.

La atención domiciliaria como alternativa a la hospitalización convencional / Home care as an alternative to conventional hospital admission

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