Sexuality in chronic respiratory failure: coincidences and divergences between patient and primary caregiver

AbstractSexual functioning can be affected by chronic illness in a variety of ways. These problems affect the patient's relationship and the degree of satisfaction with his partner. We conducted a study in order to evaluate the perception of sexual difficulties and changes in communication with patients and their wives. Male chronic obstructive pulmonary disease patients with (COPD) and chronic respiratory failure on long-term oxygen therapy were studied. The evaluation method used has consisted of the individualized administration of a semi-structured interview created for this purpose. This interview was conducted with the patients and their wives. One part of the interview was dedicated to evaluating possible sexual problems and how these problems affect the relationship between the couples. In addition, patients as well as their partners were asked the degree of satisfaction with their partners and the degree of satisfaction with their lives. Forty-nine patients and their spouses have been included in the study. Thirty-three patients (67·3%) showed some type of sexual problem (lack of desire and/or impotence). Sixteen wives (33%) answered affirmatively to the question about whether changes at a communicative level as a consequence of the patient's illness had occurred. In relation to the appearance of sexual changes, 46 (94%) of the wives answered affirmatively. The wives were significantly less satisfied with the relationship than the patients, which was related to communication problems. The group of patients were more satisfied with their partners than with their life, whereas no difference has been observed in the wives with both variables. An important percentage of patients with chronic insufficiency who have sexual difficulties exits. A factor which influences the perception of such problems in a very important way is the degree of affection in the relationship between the couples

Patient Experience in Home Respiratory Therapies: Where We Are and Where to Go

The increasing number of patients receiving home respiratory therapy (HRT) is imposing a major impact on routine clinical care and healthcare system sustainability. The current challenge is to continue to guarantee access to HRT while maintaining the quality of care. The patient experience is a cornerstone of high-quality healthcare and an emergent area of clinical research. This review approaches the assessment of the patient experience in the context of HRT while highlighting the European contribution to this body of knowledge. This review demonstrates that research in this area is still limited, with no example of a prescription model that incorporates the patient experience as an outcome and no specific patient-reported experience measures (PREMs) available. This work also shows that Europe is leading the research on HRT provision. The development of a specific PREM and the integration of PREMs into the assessment of prescription models should be clinical research priorities in the next several years.info:eu-repo/semantics/publishedVersio

What does it take to make integrated care work? A ‘cookbook’ for large-scale deployment of coordinated care and telehealth

The Advancing Care Coordination & Telehealth Deployment (ACT) Programme is the first to explore the organisational and structural processes needed to successfully implement care coordination and telehealth (CC&TH) services on a large scale. A number of insights and conclusions were identified by the ACT programme. These will prove useful and valuable in supporting the large-scale deployment of CC&TH. Targeted at populations of chronic patients and elderly people, these insights and conclusions are a useful benchmark for implementing and exchanging best practices across the EU. Examples are: Perceptions between managers, frontline staff and patients do not always match; Organisational structure does influence the views and experiences of patients: a dedicated contact person is considered both important and helpful; Successful patient adherence happens when staff are engaged; There is a willingness by patients to participate in healthcare programmes; Patients overestimate their level of knowledge and adherence behaviour; The responsibility for adherence must be shared between patients and health care providers; Awareness of the adherence concept is an important factor for adherence promotion; The ability to track the use of resources is a useful feature of a stratification strategy, however, current regional case finding tools are difficult to benchmark and evaluate; Data availability and homogeneity are the biggest challenges when evaluating the performance of the programmes

Assessing sleep health in a European population: results of the catalan health survey 2015

Objective To describe the overall sleep health of the Catalan population using data from the 2015 Catalan Health Survey and to compare the performance of two sleep health indicators: sleep duration and a 5-dimension sleep scale (SATED). Methods Multistage probability sampling representative of the non-institutionalized population aged 15 or more years, stratified by age, gender and municipality size, was used, excluding nightshift-workers. A total of 4385 surveys were included in the analyses. Associations between sleep health and the number of reported chronic diseases were assessed using non-parametric smoothed splines. Differences in the predictive ability of age-adjusted logistic regression models of self-rated health status were assessed. Multinomial logistic regression models were used to assess SATED determinants. Results Overall mean (SD) sleep duration was 7.18 (1.16) hours; and SATED score 7.91 (2.17) (range 0–10), lower (worse) scores were associated with increasing age and female sex. Alertness and efficiency were the most frequently impaired dimensions across age groups. SATED performed better than sleep duration when assessing self-rated health status (area under the curve = 0.856 vs. 0.798; p-value <0.001), and had a linear relationship with the number of reported chronic diseases, while the sleep duration relationship was u-shaped. Conclusions Sleep health in Catalonia is associated with age and gender. SATED has some advantaged compared to sleep duration assessment, as it relates linearly to health indicators, has a stronger association with self-rated health status, and provides a more comprehensive assessment of sleep health. Therefore, the inclusion of multi-dimensional sleep health assessment tools in national surveys should be considered.This work was cofunded by Ministerio de Economía y Competitividad [COFUND2014-51501]. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript

Patient Experience in Pancreas-Kidney Transplantation-A Methodological Approach Towards Innovation in an Established Program

Simultaneous pancreas-kidney transplantation (SPKT) leads to increased survival and quality of life, and is an alternative treatment for insulin-dependent diabetes mellitus and end-stage kidney disease. Due to the particularities of this population (often with multiple comorbidities) and of the surgery (only performed in a few centers), a comprehensive analysis of patients' experience along the SPKT process is crucial to improve patient care and add value to this procedure. Therefore, we applied a systematic and iterative methodology with the participation of both patients and professional teams working together to explore and identify unmet needs and value-adding steps along the transplant patient journey at an established pancreas transplant program. Four main steps (to comprehend, to explore, to experiment and to assess) led to several interventions around three major areas: Administration and logistics, information and communication, and perceived quality of assistance. As a result, both displacements to the hospital for diagnostic purposes and the time delay involved in joining the patient waiting list for transplantation were reduced in parallel to the administrative procedures. In conclusion, the methodological implementation of key organizational changes has great impact on overall patient experience. Further quantitative analysis from the patient's perspective will consolidate our program and may add new prototype service design components

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

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 &gt; 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

Personalized Respiratory Medicine: Exploring the Horizon, Addressing the Issues. Summary of a BRN-AJRCCM Workshop Held in Barcelona on June 12, 2014.

This Pulmonary Perspective summarizes the content and main conclusions of an international workshop on personalized respiratory medicine coorganized by the Barcelona Respiratory Network (www.brn.cat)and the AJRCCM in June 2014. It discusses (1) its definition and historical, social, legal, and ethical aspects; (2) the view from different disciplines, including basic science, epidemiology, bioinformatics,and network/systems medicine; (3) the bottlenecks and opportunities identified by some currently ongoing projects; and (4) the implications for the individual, the healthcare system and the pharmaceutical industry. The authors hope that, although it is not a systematic review on the subject,this document can be a useful reference for researchers, clinicians, healthcare managers, policy-makers,and industry parties interested in personalized respiratory medicine