An expert patient program to improve the empowerment and quality of life of people with multiple sclerosis: protocol for a multicenter pre-post intervention study

Health education; Multiple sclerosis; Quality of lifeEducación para la salud; Esclerosis múltiple; Calidad de vidaEducació sanitaria; Esclerosi múltiple; Qualitat de vidaIntroduction: Multiple sclerosis (MS) causes a progressive disability, which substantially impacts the quality of life (QoL). Health interventions that meet the needs and demands of people with MS are essential to minimize QoL impairment. Expert patient programs (EPPs) facilitate health-related empowerment through peer learning. Based on a previous focus group study, we designed an EPP for MS coordinated by nursing professionals for implementation in the different MS reference units of Catalonia (Southwestern Europe). This study aims to evaluate the effects on quality of life, disease-related knowledge, and self-management related to the health process of the participants of the Expert Patient Program Catalonia™ for people with multiple sclerosis (EPPC-MS). Methods: Pre-post intervention multicenter clinical study involving 12 groups of 12 participants: six groups including relapsing and six groups including progressive MS patients, with 144 participants from 7 MS reference units from all over Catalonia, organized in six teams. The intervention will consist of nine telematic learning peer-led sessions (one weekly session). The expert patient (EP) leading the sessions will be an individual with MS with disease-related knowledge, who will be further trained by nurses to lead the sessions. Study variables will be measured before and immediately after the intervention and 6 and 12 months after the end of the sessions and will include: QoL, emotional impact, activation of the person, MS-related knowledge, fatigue, habits and lifestyles, health services use, and program-related experience. Baseline characteristics considered will be sociodemographic data, date of MS diagnosis and type, family history, and treatment characteristics. Variables related to disease follow-up will be new relapses and characteristics and changes in the ongoing treatment. The number of sessions attended will also be collected. Study variables will be analyzed using a pre-post comparison. Discussion: Peer-led learning programs led by EP help empower people with chronic conditions and offer them tools to improve their autonomy and QoL. This study’s intervention will be performed remotely, offering advantages both for people with chronic conditions and the healthcare system regarding the facilitation of family and work conciliation, saving time, simplifying attendance to meetings, lowering costs, and using fewer material resources.This study was promoted by the MS unit at Vall d’Hebron Hospital Campus and had no external sponsor. The PhD candidate/first author was supported through the Strategic Plan for Research and Innovation in Health 2016–2020 (PERIS) (ref. BDNS 542793) funded by the Health Department of Catalonia. This study had been partially funded by the Official College of Nurses of Barcelona (www.coib.cat) as part of the Nurse Research Projects Grants (PRN-475/2021). None of the funders were involved in the design of the study, manuscript writing or data collection, and will not be involved in data analysis or interpretation and manuscript writing in the future. The only funders’ requirement is that any publications associate with this study must be open access and deposited in an institutional repository

Spanish Validation of the 'User Reported Measure of Care Coordination' Questionnaire for Older People with Complex, Chronic Conditions

Older people with complex, chronic conditions often receive insufficient or inefficient care provision, and few instruments are able to measure their perception of care provision. The "User ReportedMeasure of Care Coordination" instrument has been satisfactorily used to evaluate chronic care provision and integration. The aim of this study is to validate this instrument in Spanish. Methods: The questionnairewas adapted and validated in two phases: translation and cultural adaptation of the questionnaire and psychometric property measurement. Study population were chronic care conditions patients. Results: A total of 332 participants completed test re-test as part of the questionnaire validation process. The final version of the questionnaire had 6 domains: Health andWell-being (D1), Health day to day (D2), Social Services (D3), Planned Care (D4), Urgent Care (D5), and Hospital Care (D6). Cronbach's alpha for the overall questionnaire was 0.86, indicating good internal consistency. When analyzing each domain, only Planned Care (D4) and Urgent Care (D5) had Cronbach's Alphas slightly lower than 0.7, although this could be related to the low number of items in each domain. A good temporal stabilitywas observed for the distinct subscales and items,with intraclass correlation coefficients varying from0.412 to 0.929 (p < 0.05). Conclusion: The adapted version of the "User ReportedMeasure of Care Coordination" into Spanish proved to be a practical tool for use in our daily practice and an efficient instrument for assessment of care coordination in chronic, complex conditions in older people across services and levels of care

Excess mortality among older adults institutionalized in long-term care facilities during the COVID-19 pandemic: a population-based analysis in Catalonia

Objectives: To assess excess mortality among older adults institutionalized in nursing homes within the successive waves of the COVID-19 pandemic in Catalonia (north-east Spain).Design: Observational, retrospective analysis of population-based central healthcare registries.Setting and participants: Individuals aged >65 years admitted in any nursing home in Catalonia between January 1, 2015, and April 1, 2022.Methods Deaths reported during the pre-pandemic period (2015-2019) were used to build a reference model for mortality trends (a Poisson model, due to the event counting nature of the variable mortality), adjusted by age, sex, and clinical complexity, defined according to the adjusted morbidity groups. Excess mortality was estimated by comparing the observed and model-based expected mortality during the pandemic period (2020-2022). Besides the crude excess mortality, we estimated the standardized mortality rate (SMR) as the ratio of weekly deaths' number observed to the expected deaths' number over the same period.Results: The analysis included 175,497 older adults institutionalized (mean 262 days, SD 132), yielding a total of 394,134 person-years: 288,948 person-years within the reference period (2015-2019) and 105,186 within the COVID-19 period (2020-2022). Excess number of deaths in this population was 5,403 in the first wave and 1,313, 111, -182, 498, and 329 in the successive waves. The first wave on March 2020 showed the highest SMR (2.50; 95% CI 2.45-2.56). The corresponding SMR for the 2nd to 6th waves were 1.31 (1.27-1.34), 1.03 (1.00-1.07), 0.93 (0.89-0.97), 1.13 (1.10-1.17), and 1.07 (1.04-1.09). The number of excess deaths following the first wave ranged from 1,313 (2nd wave) to -182 (4th wave). Excess mortality showed similar trends for men and women. Older adults and those with higher comorbidity burden account for higher number of deaths, albeit lower SMRs.Conclusion: Excess mortality analysis suggest a higher death toll of the COVID-19 crisis in nursing homes than in other settings. Although crude mortality rates were far higher among older adults and those at higher health risk, younger individuals showed persistently higher SMR, indicating an important death toll of the COVID-19 in these groups of people

An expert patient program to improve the empowerment and quality of life of people with multiple sclerosis : protocol for a multicenter pre-post intervention study

Multiple sclerosis (MS) causes a progressive disability, which substantially impacts the quality of life (QoL). Health interventions that meet the needs and demands of people with MS are essential to minimize QoL impairment. Expert patient programs (EPPs) facilitate health-related empowerment through peer learning. Based on a previous focus group study, we designed an EPP for MS coordinated by nursing professionals for implementation in the different MS reference units of Catalonia (Southwestern Europe). This study aims to evaluate the effects on quality of life, disease-related knowledge, and self-management related to the health process of the participants of the Expert Patient Program Catalonia™ for people with multiple sclerosis (EPPC-MS). Pre-post intervention multicenter clinical study involving 12 groups of 12 participants: six groups including relapsing and six groups including progressive MS patients, with 144 participants from 7 MS reference units from all over Catalonia, organized in six teams. The intervention will consist of nine telematic learning peer-led sessions (one weekly session). The expert patient (EP) leading the sessions will be an individual with MS with disease-related knowledge, who will be further trained by nurses to lead the sessions. Study variables will be measured before and immediately after the intervention and 6 and 12 months after the end of the sessions and will include: QoL, emotional impact, activation of the person, MS-related knowledge, fatigue, habits and lifestyles, health services use, and program-related experience. Baseline characteristics considered will be sociodemographic data, date of MS diagnosis and type, family history, and treatment characteristics. Variables related to disease follow-up will be new relapses and characteristics and changes in the ongoing treatment. The number of sessions attended will also be collected. Study variables will be analyzed using a pre-post comparison. Peer-led learning programs led by EP help empower people with chronic conditions and offer them tools to improve their autonomy and QoL. This study's intervention will be performed remotely, offering advantages both for people with chronic conditions and the healthcare system regarding the facilitation of family and work conciliation, saving time, simplifying attendance to meetings, lowering costs, and using fewer material resources

Gestió de la infecció pel coronavirus SARS-CoV-2 en l’àmbit residencial: pla sectorial

Coronavirus SARS-CoV-2; COVID-19; 2019-nCoV; Pla sectorial; Fase de represa; ResidènciesCoronavirus SARS-CoV-2; COVID-19; 2019-nCoV; Plan sectorial; Fase de reanudación; ResidenciasCoronavirus SARS-CoV-2; COVID-19; 2019-nCoV; Sector plan; Resumption phase; ResidencesEl document que es presenta estableix nous criteris i mesures per adaptar el funcionament dels centres residencials a aquesta etapa de la pandèmia del coronavirus SARS-CoV-2

Recomanacions per a la prevenció i el control de xinxes en centres sanitaris, residències de gent gran i altres establiments socials

Xinxes; Centres sanitaris: Residències de gent gran; PrevencióChinches; Centros sanitarios: Residencias de personas mayores; PrevenciónBedbugs; Health centers: Homes for the elderly; PreventionLes xinxes de llit són insectes petits (uns 5 mm llarg els adults), sense ales i d’un color rogenc terrós, que piquen els humans i els animals per alimentar-se de la seva sang, però és poc probable que puguin transmetre malalties. L’interès sanitari es limita a les molèsties que poden ocasionar les seves picades

Excess mortality among older adults institutionalized in long-term care facilities during the COVID-19 pandemic: a population-based analysis in Catalonia

ObjectivesTo assess excess mortality among older adults institutionalized in nursing homes within the successive waves of the COVID-19 pandemic in Catalonia (north-east Spain).DesignObservational, retrospective analysis of population-based central healthcare registries.Setting and participantsIndividuals aged &gt;65 years admitted in any nursing home in Catalonia between January 1, 2015, and April 1, 2022.MethodsDeaths reported during the pre-pandemic period (2015–2019) were used to build a reference model for mortality trends (a Poisson model, due to the event counting nature of the variable “mortality”), adjusted by age, sex, and clinical complexity, defined according to the adjusted morbidity groups. Excess mortality was estimated by comparing the observed and model-based expected mortality during the pandemic period (2020–2022). Besides the crude excess mortality, we estimated the standardized mortality rate (SMR) as the ratio of weekly deaths’ number observed to the expected deaths’ number over the same period.ResultsThe analysis included 175,497 older adults institutionalized (mean 262 days, SD 132), yielding a total of 394,134 person-years: 288,948 person-years within the reference period (2015–2019) and 105,186 within the COVID-19 period (2020–2022). Excess number of deaths in this population was 5,403 in the first wave and 1,313, 111, −182, 498, and 329 in the successive waves. The first wave on March 2020 showed the highest SMR (2.50; 95% CI 2.45–2.56). The corresponding SMR for the 2nd to 6th waves were 1.31 (1.27–1.34), 1.03 (1.00–1.07), 0.93 (0.89–0.97), 1.13 (1.10–1.17), and 1.07 (1.04–1.09). The number of excess deaths following the first wave ranged from 1,313 (2nd wave) to −182 (4th wave). Excess mortality showed similar trends for men and women. Older adults and those with higher comorbidity burden account for higher number of deaths, albeit lower SMRs.ConclusionExcess mortality analysis suggest a higher death toll of the COVID-19 crisis in nursing homes than in other settings. Although crude mortality rates were far higher among older adults and those at higher health risk, younger individuals showed persistently higher SMR, indicating an important death toll of the COVID-19 in these groups of people

Bases per al desenvolupament del model organitzatiu d’atenció integral a la població adulta amb necessitats pal·liatives i en situació de final de la vida

Atenció integral; Població adulta; Cures pal·liatives; Malalties limitantsComprehensive care; Adult population; Palliative care; Limiting illnessesAtención integral; Población adulta; Cuidados paliativos; Enfermedades limitantesAquest document, emmarcat en el Pla de salut 2016-2020, pretén considerar i alinear les directrius en l’atenció al final de la vida i cures pal·liatives derivades del Pla director sociosanitari, així com les impulsades pel Programa de prevenció i atenció a la cronicitat en matèria de cronicitat avançada. Recull les bases per al desenvolupament del model d’atenció al final de la vida a Catalunya, entenent l’etapa de final de vida amb una mirada àmplia, que va des de la fase avançada de la malaltia fins a la mort, i fins i tot més enllà, amb el procés de dol dels familiars i persones de l’entorn

Bases per al desenvolupament del model organitzatiu d’atenció integral a la població infantil i juvenil amb necessitats pal·liatives i en situació de final de la vida

Atenció integral; Població infantil i juvenil; Cures pal·liatives; Malalties limitantsAtención integral; Población infantil y juvenil; Cuidados paliativos; Enfermedades limitantesComprehensive care; Children and youth population; Palliative care; Limiting illnessesLes cures pal·liatives pediàtriques proporcionen una atenció integral, interdisciplinària i transversal als nens i joves que tenen malalties limitants per a la vida, necessitats pal·liatives i/o que es troben en situació de final de la vida. Aquest document, emmarcat en el Pla de Salut de Catalunya 2016-2020, recull les bases per al desenvolupament del model pediàtric d’atenció al final de la vida a Catalunya. Inicialment, prenent com a referència documents d’organitzacions internacionals i estatals, es defineix què són les cures pal·liatives pediàtriques, a qui van dirigides i quines són les singularitats i especificitats respecte a les cures pal·liatives de la població adulta. També inclou una anàlisi de situació en què es descriuen quines són les necessitats pal·liatives de la població pediàtrica, de quins recursos es disposa per atendre aquestes necessitats i on s’atenen els nens i joves en els darrers dies de vida. S’estima que a Catalunya hi ha entre 1.500 i 1.800 nens i joves que tenen una malaltia limitant per a la seva vida. D’aquests, entre 750 i 900 tenen necessitat de ser atesos per equips de cures pal·liatives pediàtriques. Tenint en compte les dades de mortalitat dels darrers anys, aproximadament 400 nens i joves (menors de 20 anys) moren anualment en el nostre territori. D’aquests, el 63% moren per causes previsibles i es consideren subsidiaris de rebre cures pal·liatives pediàtriques. Encara que són diferents els àmbits, nivells i recursos assistencials que intervenen o poden intervenir en l’atenció que requereix el nen o el jove i la seva família, la majoria de les morts de la població pediàtrica es produeixen a l’hospital d’aguts. Posteriorment es presenta quina és la visió dels professionals, pacients i cuidadors respecte a les cures pal·liatives pediàtriques a Catalunya. Aquesta percepció es va recollir a través de grups de treball presencials i telemàtics i va permetre identificar aspectes clau que el model pediàtric d’atenció pal·liativa havia de considerar i cobrir. Es van identificar nou grups de garanties que el model pediàtric d’atenció pal·liativa i al final de la vida havia de preveure: àrea clínica; atenció centrada en la persona; competència professional; cuidar el cuidador; equitat, accessibilitat, continuïtat i proximitat; atenció domiciliària; coordinació assistencial; avaluació, millora, innovació i recerca, i adequació estructural i tecnològica. Finalment, mantenint els grups de garanties establerts a partir de la visió dels professionals, pacients i cuidadors, el document recull un conjunt de recomanacions per assolir aquelles garanties que han estat identificades i prioritzades com a imprescindibles per oferir a la població pediàtrica una atenció pal·liativa de qualitat. Concretament, es plantegen 42 recomanacions generals, 10 recomanacions específiques per a determinats grups de població susceptibles de rebre cures pal·liatives pediàtriques (perinatals i malalties minoritàries)i 8 recomanacions específiques per a diferents àmbits assistencials

Consens d’escales i eines per a la valoració multidimensional de les persones a Catalunya

Model d'atenció integral; Valoració multidimensional; DiagnòsticModelo de atención integral; Valoración multidimensional; DiagnósticoComprehensive care model; Multidimensional valuation; DiagnosisActualment no existeix a Catalunya un consens sobre quin hauria de ser el mínim comú denominador d’escales i eines d’elecció per a la valoració de les diferents dimensions de les persones grans amb multimorbiditat, fragilitat, cronicitat complexa o avançada. Aquest escenari fa evident la necessitat de disposar d’escales i eines consensuades i compartides que facilitin l’aproximació multidimensional a aquestes persones de forma objectiva i pragmàtica, amb l’objectiu d'ajudar els professionals en aquest procés d’individualització de l’atenció. És per aquest motiu que, impulsat per la Direcció General de Planificació i Recerca en Salut i per l’oficina eSalut, s’ha promogut i desenvolupat aquest consens i es vol assegurar que la proposta pugui ser suportada en l’entorn digital