scholarly journals P120 Developing “My quality of life” programme based on ICHOM Standard Set for IBD: 1-year results

2021 ◽  
Vol 15 (Supplement_1) ◽  
pp. S211-S213
Author(s):  
I Roa ◽  
O Merino ◽  
L Gómez Irwin ◽  
M Arosa ◽  
J M García González ◽  
...  

Abstract Background Inflammatory bowel diseases (IBD) are chronic relapsing diseases of unknown etiology, usually beginning at a young age. Although life expectancy of IBD patients is near to the mean of healthy population, IBD has a significantly negative impact on patients’ quality of life. Recent research has evidenced that a poorer quality of life can contribute to relapse or worsening of IBD symptoms, reduce treatment adherence and lead to poorer outcomes. The Ezkerraldea-Enkarterri-Cruces Healthcare Organization in Spain has made a firm commitment to adopt the Value-Based Health Care (VBHC) model, which advocates for the incorporation of patient-perceived quality of life variables to the items we normally assess. The IBD Unit, in pursuit of adhering to the VBHC corporate programme, has launched on a process to analyze our health care delivery system and improve the effectiveness of our Performance Improvement Plan based on patients’ experience. Objectives: - To identify and systemize the incorporation of perceived quality of life variables - To reorient medical care towards what really matters to patients Methods We have built a multi-disciplinary team comprised of healthcare professionals involved in IBD management (Figure 1). Patients form the core of the team’s meetings, helping in the development of User Experience (Figure 2) and Empathy Maps (Figure 3) by using Design Thinking strategies. After the detection of the obstacles faced by patients, we outlined a Process Map (Figure 4), where we critically analyzed the route followed by patients in our health-care system before reaching the IBD Unit. Subsequently, a specific route was outlined considering the set proposed for the disease by the ICHOM consortium as a reference framework. Questionnaires and surveys were designed using patient information across different areas of care, in order to guarantee the correct functioning of the route. Results We obtained a list of 14 improvement proposals which are currently at different levels of evaluation. In our first year, we have been able to implement important modifications which include: - A specific remote consultation for IBD patients - Fast track pathways - Nutritional guidelines to assure compliance - Shortening waiting lists - Reduction in patient bureaucracy and paperwork - Virtual monitorization of patients with asymptomatic disease Conclusion - VHBC implementation implies a transformation of the organization - User Experience tools add a different perspective to the route design, focusing on what really matters to patients and improving their quality of life - This change of perspective is important, especially in chronic diseases, so that patients feel less lonely with their disease and better outcomes can be obtained

2019 ◽  
Vol 92 (1) ◽  
pp. 65-82
Author(s):  
L. C. van Boekel ◽  
J. C. M. Cloin ◽  
K. G. Luijkx

This study is on the effects of spousal loss among older adults who continue to live independently after bereavement. Little longitudinal studies focus on this group, which is of special interest, since in many countries, care policy and system reform are aimed at increasing independent living among older adults. Using longitudinal data from a Dutch public data repository, we investigate the effects of spousal loss on psychological well-being, perceived quality of life, and (indication of) yearly health-care costs. Of the respondents who had a spouse and were living independently ( N = 9,400) at baseline, the majority had not lost their spouse after 12 months ( T12, n = 9,150), but 2.7% ( n = 250) had lost their spouse and still lived independently. We compared both groups using multivariate regression (ordinary least squares) analyses. The results show that spousal loss significantly lowers scores on psychological well-being and perceived quality of life, but we found no effect on health-care costs.


BMJ Open ◽  
2018 ◽  
Vol 8 (7) ◽  
pp. e021346 ◽  
Author(s):  
Anna Alonso-Solís ◽  
Katya Rubinstein ◽  
Iluminada Corripio ◽  
Erika Jaaskelainen ◽  
Annika Seppälä ◽  
...  

IntroductionTreatment-resistant schizophrenia (TRS) is a severe form of schizophrenia. In the European Union, approximately 40% of people with schizophrenia have TRS. Factors such as the persistence of positive symptoms or higher risk of comorbidities leave clinicians with a complex scenario when treating these patients. Intervention strategies based on mHealth have demonstrated their ability to support and promote self-management-based strategies. Mobile therapeutic attention for treatment-resistant schizophrenia(m-RESIST), an innovative mHealth solution based on novel technology and offering high modular and flexible functioning, has been developed specifically for patients with TRS and their caregivers. As intervention in TRS is a challenge, it is necessary to perform a feasibility study before the cost-effectiveness testing stage.Methods and analysisThis manuscript describes the protocol for a prospective multicentre feasibility study in 45 patients with TRS and their caregivers who will be attended in the public health system of three localities: Hospital Santa Creu Sant Pau (Spain), Semmelweis University (Hungary) and Gertner Institute & Sheba Medical Center (Israel). The primary aim is to investigate the feasibility and acceptability of the m-RESIST solution, configured by three mHealth tools: an app, wearable and a web-based platform. The solution collects data about acceptability, usability and satisfaction, together with preliminary data on perceived quality of life, symptoms and economic variables. The secondary aim is to collect preliminary data on perceived quality of life, symptoms and economic variables.Ethics and disseminationThis study protocol, funded by the Horizon 2020 Programme of the European Union, has the approval of the ethics committees of the participating institutions. Participants will be fully informed of the purpose and procedures of the study, and signed inform consents will be obtained. The results will be published in peer-reviewed journals and presented in scientific conferences to ensure widespread dissemination.Trial registration numberNCT03064776; Pre-results.


PLoS ONE ◽  
2017 ◽  
Vol 12 (12) ◽  
pp. e0188499 ◽  
Author(s):  
Alexandra A. N’Goran ◽  
Anouk Déruaz-Luyet ◽  
Dagmar M. Haller ◽  
Andreas Zeller ◽  
Thomas Rosemann ◽  
...  

2009 ◽  
Vol 24 (6) ◽  
pp. 585-594 ◽  
Author(s):  
Josep Lluís Conde-Sala ◽  
Josep Garre-Olmo ◽  
Oriol Turró-Garriga ◽  
Secundino López-Pousa ◽  
Joan Vilalta-Franch

1988 ◽  
Vol 20 (6) ◽  
pp. 605-620 ◽  
Author(s):  
J. R. Oppong ◽  
R. G. Ironside ◽  
L. W. Kennedy

2018 ◽  
Vol 31 (2) ◽  
pp. 138-154 ◽  
Author(s):  
Margaret Ralston ◽  
Enid Schatz ◽  
Jane Menken ◽  
Francesc Xavier Gómez-Olivé ◽  
Stephen Tollman

Sign in / Sign up

Export Citation Format

Share Document