Impact of pandemic mobility restrictions on kidney transplant patients' experience: lessons on quality of care.

BACKGROUND: Patient perspectives on their post-operative health are acknowledged as valuable healthcare outcomes and should be scrupulously considered when designing interventions for patient-centered healthcare. Yet, following the COVID-19 lockdown and in the absence of standardized guidelines on how to best provide virtual chronic care to kidney transplant recipients, little is known about how this unique population coped and managed to comply with public health indications during confinement. METHODS: This study addresses this shortcoming by examining the experiences of patients from a tertiary hospital in Spain during the initial weeks of the lockdown decreed by the national government. Specifically, we focus our attention on the perceptions and experiences of these patients by retrieving robust qualitative and quantitative data: the former based on a thematic analysis of focus group transcripts, the latter obtained from a large-scale survey. RESULTS: Our findings identify opportunities for improvement in the quality of care and point to the provisions that might be made when facing future pandemics or lockdown-requiring situations. CONCLUSIONS: As healthcare services navigate evolving landscapes, our findings on the experience of kidney transplant recipients should enable hospital services to improve the quality of care they are able to provide to such patients during periods of restricted mobility, especially those associated with future disease emergencies, and considering that home confinement is often part of the natural course of post-operative care of these patients.

mHealth Technology as a Help Tool during Breast Cancer Treatment: A Content Focus Group.

PURPOSE: To assess the usability and preferences of the contents of mHealth software developed for breast cancer patients as a tool to obtain patient-reported outcomes (PROMs), improve the patient's knowledge about the disease and its side effects, increase adherence to treatment, and facilitate communication with the doctor. INTERVENTION: an mHealth tool called the Xemio app provides side effect tracking, social calendars, and a personalized and trusted disease information platform to deliver evidence-based advice and education for breast cancer patients. METHOD: A qualitative research study using semi-structured focus groups was conducted and evaluated. This involved a group interview and a cognitive walking test using Android devices, with the participation of breast cancer survivors. RESULTS: The ability to track side effects and the availability of reliable content were the main benefits of using the application. The ease of use and the method of interaction were the primary concerns; however, all participants agreed that the application would be beneficial to users. Finally, participants expressed their expectations of being informed by their healthcare providers about the launch of the Xemio app. CONCLUSION: Participants perceived the need for reliable health information and its benefits through an mHealth app. Therefore, applications for breast cancer patients must be designed with accessibility as a key consideration.

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.

Cluster Analysis of Home Mechanical Ventilation in COPD Patients: A Picture of the Real World and Its Impact on Mortality.

BACKGROUND: Treatment of chronic hypercapnic failure in COPD patients with home noninvasive ventilation (HNIV) remains unclear. AIM: To create a curated cohort of all COPD patients on HNIV in Catalonia, perform a cluster analysis, and evaluate mortality evolution. STUDY DESIGN AND METHODS: This study was a multicenter, observational study including all COPD patients on HNIV on 1st January of 2018. Patients were selected through the Catalan Health Service, and administrative and clinical data were obtained in the previous four years. Principal component analysis of mixed data and hierarchical clustering were performed to identify clusters of patients. Mortality was evaluated from 1 January 2018 until 31 December 2020. RESULTS: A total of 247 patients were enrolled. They were mostly male (78.1%), with a median (SD) age of 70.4 (9.4) years old. In 60%, 55% and 29% of patients, obesity, sleep apnea and heart failure coexisted, respectively. Cluster analysis identified four well-differentiated groups labeled for their clinical characteristics: (1) obese smokers, (2) very severe COPD, (3) sleep apnea and (4) older comorbid males. Patients belonging to Clusters (2) and (4) had a worse prognosis than patients in Clusters (1) and (3). INTERPRETATION: A high heterogeneity in the prescription of HNIV was demonstrated. Cluster analysis identifies four different groups, of which only one had COPD as the main cause of ventilation, while the other three clusters showed a predominance of other comorbidities. This leads to different survival outcomes, including an overlapping phenotype of obesity-related disease and sleep apnea with better survival.

A qualitative study of patient and carer experiences with home respiratory therapies: Long-term oxygen therapy and home mechanical ventilation.

Studies exploring the experience of patients receiving home respiratory therapies (HRT), such as long-term oxygen therapy (LTOT) and home mechanical ventilation (HMV), are still limited. This study focused on patients' and carers' experience with LTOT and HMV. An exploratory, cross-sectional qualitative study, using semi-structured focus groups, was carried out with 18 patients receiving HRT (median 71y, 78% male, 56% on both LTOT and HMV) and 6 carers (median age 67y, 67% female). Three focus groups were conducted in three regions of Portugal. Thematic analysis was performed by two independent researchers. Patients' and carers' experience was reflected in seven major topics, linked to specific time points and settings of the treatment: Initial symptoms/circumstances (n = 41), Prescription (n = 232), Implementation (n = 184), Carer involvement (n = 34), Quality of life impact (n = 301), Health care support/navigability (n = 173) and Suggestions (n = 14). Our findings demonstrate a general good perception of the HRT by patients and carers recognizing a significative quality of life impact improvement, while identifying specific points where improvements in healthcare are needed, particularly about navigability issues, articulation between the hospital, primary care and homecare teams, especially regardingprescriptionrenewal. This knowledge is crucial to promote a long-term HRT adherence and to optimize HRT delivery in line with patients' experience, needs, and values. Moreover, these key points can inform the development of a specific patient-reported experience measure (PREM) for patients on HRT, which is not currently available, and foster a more integrated respiratory care model.

The Portuguese Model of Home Respiratory Care: Healthcare Professionals' Perspective.

Patients' and carers' views regarding the Portuguese model of home respiratory care were recently described, yet the complementary perspective of healthcare professionals (HCPs) is still to be investigated. Thus, this study explored HCPs experience in the management of patients needing home respiratory therapies (HRT), and their perspective about the Portuguese model. A phenomenological descriptive study, using focus groups, was carried out with 28 HCPs (median 42 y, 68% female) with distinct backgrounds (57% pulmonologists, 29% clinical physiologists, 7% physiotherapists, 7% nurses). Three focus groups were conducted in three regions of Portugal. Thematic analysis was performed by two independent researchers. HCPs have in general a positive view about the organization of the Portuguese model of home respiratory care, which was revealed in four major topics: Prescription (number of references, n = 171), Implementation and maintenance (n = 162), Carer involvement (n = 65) and Quality of healthcare (n = 247). Improvements needed were related to patients' late referral, HRT prescription (usability of the medical electronic prescription system and renewals burden), patients' education, access to hospital care team, lack of multidisciplinary work and articulation between hospital, primary and home care teams. This study describes the perspective of HCPs about the Portuguese model of home respiratory care and identifies specific points where improvements and reflections are needed. This knowledge may be useful to decision makers improve the current healthcare model.

Mouthpiece ventilation in neuromuscular disorders: Narrative review of technical issues important for clinical success.

In neuromuscular disorders (NMDs), nocturnal non-invasive ventilation (NIV) via a nasal mask is offered when hypercapnic respiratory failure occurs. With disease progression, nocturnal NIV needs to be extended into the daytime. Mouthpiece ventilation (MPV) is an option for daytime NIV. MPV represents a difficult task for home ventilators due to rapidly changing load conditions resulting from intermittent connections and disconnections from MPV circuit. The 252nd ENMC International Expert Workshop, held March 6th to 8th 2020 in Amsterdam, reported general guidelines for management of daytime MPV in NMDs. This report could not present all the detail regarding the technical issues important for clinical success of MPV. Based on the expert workshop discussions and the evidence from existing studies, the current narrative review aims to identify the technical issues of MPV and offers guidance via a decisional algorithm and educational figures providing relevant information that is important for successful implementation of MPV.

Longitudinal Analysis of Causes of Mortality in Continuous Positive Airway Pressure-treated Patients at the Population Level.

Rationale: Randomized controlled trials do not support a role for continuous positive airway pressure (CPAP) in preventing major cardiovascular events or mortality in patients with obstructive sleep apnea (OSA). However, these trials' setting does not apply to most CPAP-treated patients. Objectives: We aimed to assess the effect of CPAP on mortality in real-world patients. Methods: We performed a population-based longitudinal observational study including all patients with OSA prescribed CPAP during 2011 in Catalonia, Spain, and non-OSA control subjects matched (1:2) by sex, 5-year age group, and region who were followed from 2011 to 2016. Results: A total of 9,317 CPAP-treated patients with OSA and 18,370 control subjects without OSA were included (median age, 67 [57-72] years; 74% male). During a median follow-up of 5.5 years, 2,301 deaths were recorded. After adjustment by a composite of diagnosed comorbidities and previous use of healthcare resources, CPAP-treated patients showed a lower risk of death than control subjects (hazard ratio [HR], 0.67; 95% confidence interval [CI], 0.61-0.74), with the association not being statistically significant in women. Cancer-related deaths were the main drivers of this association (men: HR, 0.44; 95% CI, 0.36-0.54; women: HR, 0.44; 95% CI, 0.28-0.68). No significant associations were found for cardiovascular-related deaths. CPAP-treated women had an increased risk of respiratory-related death (HR, 2.41; 95% CI, 1.37-4.23). Conclusions: CPAP-treated patients had a lower mortality rate than control subjects. This relationship was driven by cancer-related, but not cardiovascular-related, deaths. Results suggest a role for sex when prescribing CPAP, especially considering respiratory-related deaths, and foster a debate on the relationship between OSA and cardiovascular outcomes.

Psychosocial, Lifestyle, and Body Weight Impact of COVID-19-Related Lockdown in a Sample of Participants with Current or Past History of Obesity in Spain.

PURPOSE: Home lockdown and isolation due to COVID-19 have been related to negative changes in mood, sleep, and eating behaviors. People with obesity are especially vulnerable to emotional eating and might be more prone to weight gain and negative outcomes during lockdown. MATERIALS AND METHODS: Individuals scheduled for an appointment at the Obesity Unit of a Tertiary Hospital between March 16 and June 21 (n=1230). An online survey was distributed on May 11. Multivariable logistic regression models and general linear models were used to assess the relationship between perceived COVID-19 threat, BS status, and outcome variables. RESULTS: Of the 603 (72.0% females, 39% aged >55 years) respondents, 223 (36.9%) were BS naïve (non-BS), 134 (22.2%) underwent BS within the two previous years (BS<2y), and 245 (40.6%) more than 2 years before (BS>2y). Participants worried about being infected by COVID-19 showed significantly larger changes in family contact (p=0.04), mood (p<0.01), sleep (p<0.01), dietary habits (p=0.05), purchases of unhealthy food (p=0.02), snacking (p=0.05), and physical activity (p=0.02). Non-BS and BS>2y participants reported greater impact of lockdown in mood (p<0.01), experienced more negative changes in dietary habits (p<0.01), and had a higher likelihood for weight gain (OR: 5.61, 95% CI: 3.0-10.46; OR: 5.45, 95% CI: 2.87-10.35, respectively) compared to BS<2y. CONCLUSIONS: COVID-19 pandemic is having a substantial negative impact in our population affected by obesity. During lockdown, people more than 2 years before BS behave like people without history of BS. Strategies addressed to prevent negative metabolic outcomes in this population are urgently needed.

Mobile Health Projects in a High-Complexity Reference Hospital: Case Study.

BACKGROUND: The widespread adoption of mobile and wearable devices and apps makes it essential to assess their possible impact on the management of health and diseases. Health care providers (HCPs) find themselves faced with a new situation in their setting with the proliferation of mobile health (mHealth) intervention tests. Few studies have addressed the development of mHealth and the methodologies to manage these apps in a tertiary hospital. OBJECTIVE: The aim of this study was to evaluate the mHealth projects implemented in the Hospital Clínic of Barcelona to increase awareness of the context in which they are used and to develop policies for the development of good practice in mHealth innovation. METHODS: A prospective, descriptive cross-sectional study was conducted in a highly specialized university hospital with 850 beds for adults and a reference population of 520,000 inhabitants. A specific questionnaire was developed based on the Mobile Health 5 Dimensions European (MOHE 5D-EU) theoretical model to find mHealth projects. Apps, telemedicine, and wearable devices were included in the systematic search. For that purpose, a vertical (top-down) email-based snowball process was conducted. Data were collected from February to December 2018 by conducting personal interviews with HCPs using a structured questionnaire. RESULTS: During the study period, 45 interviews were conducted; 35 mHealth initiatives were found, with 25 targeted to patients and 10 to health professionals. Most mHealth initiatives (34/35, 97%) were related to the software field (apps and telemedicine initiatives), and one was related to wearable devices. Among the projects, 68% (24/35) were classified as medical devices or developments at the edge (developments susceptible to limitations depending on the intended use). In relation to data protection, 27 initiatives managing personal data (27/35, 77%) considered data protection legislation. Only 9% (3/35) of the initiatives had foreseen the use of interconnectivity standards. Most of the initiatives were funded by grants (14/35, 40%), sponsorships (5/35, 14%), or the hospital itself (5/35, 14%). In terms of clinical management, most projects were developed in the field of research, followed by professional tools, clinical information, and therapeutic education. Only 6 projects were involved with health care; all were led by either the industry or small and medium enterprises. CONCLUSIONS: This study helped create the design of a map of the mHealth projects conducted in our hospital that showed the stages of development of the different ongoing projects. This will allow monitoring of mHealth projects and construction of tools to reinforce areas with detected deficiencies. Our theoretical approach using a modified MOHE 5D-EU model was found to be useful for analyzing the characteristics of mHealth projects.

Impact of sleep health on self-perceived health status.

Although sleep habits have long been recognized as a promoter of health, the World Health Organization 2014 report on non-communicable diseases (NCDs) only listed smoking, alcohol intake, diet and physical activity (PA) as key modifiable risk factors that could enhance health and prevent NCDs. Cross-sectional data on 4385 surveys from the 2015 Catalan Health Survey, representative of the 2015 non-institutionalized Catalan population over age 14, were used to assess and compare the independent associations of low PA (International Physical Activity Questionnaire (IPAQ): low activity); poor diet (PREvención con DIeta MEDiterránea questionnaire (PREDIMED): low-adherent); poor sleep health (Satisfaction, Alertness, Timing, Efficiency and Duration scale (SATED): <8); smoking status; and, alcohol intake (high-risk drinker based on standard drink units) with having a poor self-perceived health status. Logistic regression models adjusted by age, gender, education level and number of comorbidities showed that poor sleep health had the strongest independent association with poor self-perceived health status (OR = 1.70; 95%CI: 1.37-2.12), followed by poor diet (OR = 1.37; 95%CI: 1.10-1.72) and low PA (OR = 1.31; 95%CI: 1.01-1.69). This suggests that sleep habits should be included among the important modifiable health risk factors and be considered a key component of a healthy lifestyle.

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.

Experiences and real life management of insulin pump therapy in adults with type 1 diabetes / Experiencias y gestión en la vida real del tratamiento con bomba de insulina de adultos con diabetes tipo 1

Objective: There is scarce information regarding the performance of a specific, structured education program addressed to patients with type 1 diabetes (T1D) using continuous subcutaneous insulin infusion (CSII) including both routine use of the therapy and patient experience evaluation. We aimed to assess the routine use of CSII and patient's experience and satisfaction regarding a specific structured patient self-management education and care program. Methods: A retrospective, observational, cross-sectional study collecting CSII routine use downloaded data. Patient experience and satisfaction were evaluated using an anonymous online survey covering different aspects of CSII self-management education and care program. Results: 380 T1D subjects were included (aged 45.3±12.17 years, 62.1% women, diabetes duration 27.8±10.3 years, 9.7±4.7 years on CSII, HbA1c 7.7+1.0%; 61.0±7.9mmol/mol). Participants with HbA1c≤7.5% (58mmol/mol, n=178) did more SMBGs per day (4.4±2.1 vs. 3.9±1.9); used more boluses (5.0±1.8 vs. 4.5±2.0); the percentage of insulin given as bolus was higher (50.1±12.8 vs. 44.9±13.2%); the night bolus wizard (BW) high glucose target was lower (125.9±4.4 vs. 130.5±12.8mg/dl) and time on CSII therapy was shorter (8.9±4.6 vs. 10.3±4.6 years. p<0.05 all comparisons). More SMBG/day, shorter duration of CSII treatment, a lower BW low glucose target at night, a lower BW high glucose target at night, total insulin dose per day and total number of carbohydrates per day were related with better HbA1c levels. 60% of 373 patients answered the questionnaire. The response to the different aspects of the educational program was homogeneously highly satisfactory. Seventy-seven percent of patients scored the program as very useful. Ninety-three percent of CSII users would not return to their previous insulin treatment. Conclusions: The analysis of routine clinical use of CSII by T1D patients demonstrates that glucose control may be associated with some pump usage and adherence parameters. The overall user experience and satisfaction with our CSII self-management education and care program was remarkably favorable

Objetivo: Hay poca información sobre la eficacia de un programa educativo estructurado específico dirigido a los pacientes con diabetes tipo 1 (DT1) que utilizan infusión subcutánea continua de insulina (ISCI) que incluye tanto el uso habitual del tratamiento como la evaluación de la experiencia de los pacientes. Nuestro objetivo era valorar el uso habitual de la ISCI, la experiencia y la satisfacción del paciente con un programa educativo y asistencial estructurado específico para autogestión de los pacientes. Métodos: Estudio transversal retrospectivo observacional en el que se recogieron datos descargados sobre el uso habitual de la ISCI. Se evaluaron la experiencia y la satisfacción de los pacientes mediante una encuesta en línea anónima que abarcaba distintos aspectos del programa educativo y asistencial para autogestión de la ISCI. Resultados: Se incluyó a 380 pacientes con DT1 (45,3±12,17 años de edad, 62,1% mujeres, duración de la diabetes 27,8±10,3 años, 9,7±4,7 años con ISCI, HbA1c 7,7+1,0%; 61,0±7,9mmol/mol). Los participantes con HbA1c<7,5% (58mmol/mol, n=178) practicaron más autocontroles al día (4,4±2,1 vs. 3,9±1,9); usaron más bolos (5,0±1,8 vs. 4,5±2,0); tuvieron un porcentaje de insulina administrada en bolo mayor (50,1±12,8 vs. 44,9±13,2%) y el objetivo de glucosa nocturna alta en el recomendador de bolo (bolus wizard, BW) era más bajo (125,9±4,4 vs. 130,5±12,8mg/dl), y su tiempo con ISCI era menor (8,9±4,6 vs. 10,3±4,6 años, p<0,05 para todas las comparaciones). Más autocontroles al día, la menor duración del tratamiento con ISCI, un objetivo de glucosa baja del BW menor por la noche, un objetivo de glucosa alta del BW por la noche menor, la dosis total diaria de insulina y el número total de hidratos de carbono diarios estaban relacionados con mejores valores de HbA1c. El 60% de 373 pacientes contestaron el cuestionario. La respuesta a los distintos aspectos del programa educativo fue muy satisfactoria en conjunto. El 77% de los pacientes valoraron el programa como muy útil. El 93% de los usuarios de ISCI no volverían el tratamiento de insulina previo. Conclusiones: El análisis del uso clínico sistemático de la ISCI por pacientes con DT1 demuestra que el control de la glucosa puede relacionarse con algunos parámetros de uso y cumplimiento de la bomba. La experiencia global del usuario y la satisfacción con nuestro programa educativo y asistencial de autogestión de la ISCI fueron notablemente favorables

Experiences and real life management of insulin pump therapy in adults with type 1 diabetes.

OBJECTIVE: There is scarce information regarding the performance of a specific, structured education program addressed to patients with type 1 diabetes (T1D) using continuous subcutaneous insulin infusion (CSII) including both routine use of the therapy and patient experience evaluation. We aimed to assess the routine use of CSII and patient's experience and satisfaction regarding a specific structured patient self-management education and care program. METHODS: A retrospective, observational, cross-sectional study collecting CSII routine use downloaded data. Patient experience and satisfaction were evaluated using an anonymous online survey covering different aspects of CSII self-management education and care program. RESULTS: 380 T1D subjects were included (aged 45.3±12.17 years, 62.1% women, diabetes duration 27.8±10.3 years, 9.7±4.7 years on CSII, HbA1c 7.7+1.0%; 61.0±7.9mmol/mol). Participants with HbA1c≤7.5% (58mmol/mol, n=178) did more SMBGs per day (4.4±2.1 vs. 3.9±1.9); used more boluses (5.0±1.8 vs. 4.5±2.0); the percentage of insulin given as bolus was higher (50.1±12.8 vs. 44.9±13.2%); the night bolus wizard (BW) high glucose target was lower (125.9±4.4 vs. 130.5±12.8mg/dl) and time on CSII therapy was shorter (8.9±4.6 vs. 10.3±4.6 years. p<0.05 all comparisons). More SMBG/day, shorter duration of CSII treatment, a lower BW low glucose target at night, a lower BW high glucose target at night, total insulin dose per day and total number of carbohydrates per day were related with better HbA1c levels. 60% of 373 patients answered the questionnaire. The response to the different aspects of the educational program was homogeneously highly satisfactory. Seventy-seven percent of patients scored the program as very useful. Ninety-three percent of CSII users would not return to their previous insulin treatment. CONCLUSIONS: The analysis of routine clinical use of CSII by T1D patients demonstrates that glucose control may be associated with some pump usage and adherence parameters. The overall user experience and satisfaction with our CSII self-management education and care program was remarkably favorable.