Patient quality criteria for a multidisciplinary integrated care pathway for von Hippel-Lindau syndrome

2021 ◽  
Vol 79 ◽  
pp. S295
Author(s):  
R. Giles ◽  
K. Dreijerink ◽  
R.S. Van Leeuwaarde ◽  
A.N. Van Der Horst-Schrivers ◽  
T.P. Links
2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e13534-e13534
Author(s):  
Rachel H. Giles ◽  
Koen Dreijerink ◽  
Rachel van Leeuwaarde ◽  
Wendy Wolters ◽  
Wouter Zandee ◽  
...  

e13534 Background: The objective was to establish a comprehensive set of patient-driven recommendations for specialists and allied healthcare professionals for the care of individuals with the multiple neoplasia syndrome von Hippel-Lindau (VHL). VHL patients require multiple surgeries during the course of their lifetimes, due to cysts and tumors in various organs including the kidney, brain, eye, spine, pancreas, adrenal glands, and broad ligament/epididymis. Screening and care from multiple specialists form the backbone of their care, yet this is rarely coordinated in an optimal manner. Methods: The Dutch VHL patient organization (Belangenvereniging VHL) initiated this process, and approached specialists and expert patients for input. Using components of consensus methodology, a 20-member multidisciplinary panel produced an integrated care pathway relating to the provision of care for VHL patients by patients, medical specialists, specialist nurses and allied healthcare professionals. Items were developed by 3 rounds of email correspondence in which the basis was formed for a consensus meeting which constituted the third round of review. The fourth and final round was an email review of the consensus output. Results: The panel agreed on recommendations for the optimal quality of care for VHL patients, in the form of a decision tree, which is supervised by a nurse specialist as a main contact point. These items were grouped under categories of "Diagnosis" and "Patient Pathway" and included recommendations on training, communication, and quality assessment as well as specific items related to VHL diagnosis clinics, non-academic treatment clinics, and follow-up survivor groups. The Netherlands has 3 official Expert Reference Centers for VHL care (Groningen, Utrecht, Nijmegen), and the patient organization and allied specialists are planning to publish this protocol, while implementing its practice in those 3 sites. Conclusions: Medical specialists (internists, endocrinologists, urologists, neurosurgeons, ophthalmologists, geneticists, etc) and specialist nurses play a vital role alongside allied healthcare professionals to provide care to people with VHL and their families. Yet VHL patients and their families are the experts most acquainted with their own unmet needs. We present a set of standards and consensus recommendations from the patient perspective for the roles for these practitioners to provide optimal VHL care. These recommendations could form the basis for facilitated development of comprehensive integrated pathways for any pleiotropic neoplasia syndrome, and represent best-practice collaboration between patient organizations and national expertise centers to provide value-based healthcare.


Author(s):  
Roelof Ettema ◽  
Goran Gumze ◽  
Katja Heikkinen ◽  
Kirsty Marshall

BackgroundCare recipients in care and welfare are increasingly presenting themselves with complex needs (Huber et al., 2016). An answer to this is the integrated organization of care and welfare in a way that personalized care is the measure (Topol, 2016). The reality, however, is that care and welfare are still mainly offered in a standardized, specialized and fragmented way. This imbalance between the need for care and the supply of care not only leads to under-treatment and over-treatment and thus to less (experienced) quality, but also entails the risk of mis-treatment, which means that patient safety is at stake (Berwick, 2005). It also leads to a reduction in the functioning of citizens and unnecessary healthcare cost (Olsson et al, 2009).Integrated CareIntegrated care is the by fellow human beings experienced smooth process of effective help, care and service provided by various disciplines in the zero line, the first line, the second line and the third line in healthcare and welfare, as close as possible (Ettema et al, 2018; Goodwin et al, 2015). Integrated care starts with an extensive assessment with the care recipient. Then the required care and services in the zero line, the first line, the second line and / or the third line are coordinated between different care providers. The care is then delivered to the person (fellow human) at home or as close as possible (Bruce and Parry, 2015; Evers and Paulus, 2015; Lewis, 2015; Spicer, 2015; Cringles, 2002).AimSupport societal participation, quality of live and reduce care demand and costs in people with complex care demands, through integration of healthcare and welfare servicesMethods (overview)1. Create best healthcare and welfare practices in Slovenia,  Poland, Austria, Norway, UK, Finland, The Netherlands: three integrated best care practices per involved country 2. Get insight in working mechanisms of favourable outcomes (by studying the contexts, mechanisms and outcomes) to enable personalised integrated care for meeting the complex care demand of people focussed on societal participation in all integrated care best practices.3. Disclose program design features and requirements regarding finance, governance, accountability and management for European policymakers, national policy makers, regional policymakers, national umbrella organisations for healthcare and welfare, funding organisations, and managers of healthcare and welfare organisations.4. Identify needs of healthcare and welfare deliverers for creating and supporting dynamic partnerships for integrating these care services for meeting complex care demands in a personalised way for the client.5. Studying desired behaviours of healthcare and welfare professionals, managers of healthcare and welfare organisations, members of involved funding organisations and national umbrella organisations for healthcare and welfare, regional policymakers, national policy makers and European policymakersInvolved partiesAlma Mater Europaea Maribor Slovenia, Jagiellonian University Krakow Poland, University Graz Austria, Kristiania University Oslo Norway, Salford University Manchester UK, University of Applied Sciences Turku Finland, University of Applied Sciences Utrecht The Netherlands (secretary), Rotterdam Stroke Service The Netherlands, Vilans National Centre of Expertise for Long-term Care The Netherlands, NIVEL Netherlands Institute for Health Services Research, International Foundation of Integrated Care IFIC.References1. Berwick DM. The John Eisenberg Lecture: Health Services Research as a Citizen in Improvement. Health Serv Res. 2005 Apr; 40(2): 317–336.2. Bruce D, Parry B. Integrated care: a Scottish perspective. London J Prim Care (Abingdon). 2015; 7(3): 44–48.3. Cringles MC. Developing an integrated care pathway to manage cancer pain across primary, secondary and tertiary care. International Journal of Palliative Nursing. 2002 May 8;247279.4. Ettema RGA, Eastwood JG, Schrijvers G. Towards Evidence Based Integrated Care. International journal of integrated care 2018;18(s2):293. DOI: 10.5334/ijic.s22935. Evers SM, Paulus AT. Health economics and integrated care: a growing and challenging relationship. Int J Integr Care. 2015 Jun 17;15:e024.6. Goodwin N, Dixon A, Anderson G, Wodchis W. Providing integrated care for older people with complex needs: lessons from seven international case studies. King’s Fund London; 2014.7. Huber M, van Vliet M, Giezenberg M, Winkens B, Heerkens Y, Dagnelie PC, Knottnerus JA. Towards a 'patient-centred' operationalisation of the new dynamic concept of health: a mixed methods study. BMJ Open. 2016 Jan 12;6(1):e010091. doi: 10.1136/bmjopen-2015-0100918. Lewis M. Integrated care in Wales: a summary position. London J Prim Care (Abingdon). 2015; 7(3): 49–54.9. Olsson EL, Hansson E, Ekman I, Karlsson J. A cost-effectiveness study of a patient-centred integrated care pathway. 2009 65;1626–1635.10. Spicer J. Integrated care in the UK: variations on a theme? London J Prim Care (Abingdon). 2015; 7(3): 41–43.11. Topol E. (2016) The Patient Will See You Now. The Future of Medicine Is in Your Hands. New York: Basic Books.


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