Skip to main content
SpringerLink
Log in

RareBox App. Patient-Centered Monitoring System in the Self-management of Rare Diseases

  • Conference paper
  • First Online:
Ambient Assisted Living (ForItAAL 2018)

Part of the book series: Lecture Notes in Electrical Engineering ((LNEE,volume 544))

Included in the following conference series:

  • 657 Accesses

Abstract

Mobile health applications (m-health app) allow connecting patients with care professionals more quickly and dynamically. Apps designed for a smartphone allow users to access in-formation and self-monitoring when and where they need it, boosting engagement and satisfaction rates. Starting from the construct of quality of life related to health and according to a biopsychosocial care perspective (ICF approach) [1], the paper presents and discusses research phases of the RareBox project: development, implementation and evaluation of self-monitoring App on quality of life of patients with rare diseases.

The contribution is the result of the joint work of the authors, however Andrea Fiorucci wrote the paragraphs 1, 2, 2.1, 2.2, 2.5 and 3, Stefania Pinnelli the paragraphs 2.3 and 2.4.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Log in via an institution
Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 169.00
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Hardcover Book
USD 219.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

References

  1. World Health Organization (2001) International classification of functioning, disability and health: ICF. World Health Organization, Geneva

    Google Scholar 

  2. Stolk P, Willemen MJ, Leufkens HG (2006) Rare essential: drugs for rare diseases as essential medicine. Bull World Health Organ 84(9):745–751

    Article  Google Scholar 

  3. UNIAMO: MonitoRare. Secondo Rapporto sulla condizione della persona con malattia rara in Italia. Uniamo Federazione Italiana Malattie Rare Onlus, Roma (2016)

    Google Scholar 

  4. Lipscomb J, Gotay CC, Snyder C (2005) Outcomes assessment in cancer: measures, methods and applications. University Press Cambridge, Cambridge

    Google Scholar 

  5. Marciniak A, Niero M (2000) Integrating patients’ views into the measurement of quality of life: examples from peri-post menopausal periods. Qual Lif Res 9:775–784

    Article  Google Scholar 

  6. Niero M (2002) Qualità della vita e della salute. Strategie di analisi e strumenti per la misurazione. FrancoAngeli, Milano

    Google Scholar 

  7. Goldwurm GF, Baruffi M, Colombo F (2004) Qualità della vita e benessere psicologico, Aspetti comportamentali e cognitivi del vivere felice. McGraw-Hill, Milano

    Google Scholar 

  8. Institute of Medicine, Committee on Quality of Health Care in America (2001) Crossing the quality chasm. A new health system for the 21st century. The National Academic Press, Washington, DC

    Google Scholar 

  9. Grob R (2013) The heart of patient-centered care. J Health Polit Policy Law 38(2):457–465

    Article  MathSciNet  Google Scholar 

  10. Bertelli M, Brown I (2006) Quality of life for people with intellectual disabilities. Curr Opin Psychiatry. 19:508–513

    Article  Google Scholar 

  11. Crispiani P, Giaconi C (2009) Qualità di vita e integrazione scolastica. Indicatori e strumenti di valutazione per le disabilità. Erickson, Trento

    Google Scholar 

  12. Andrews FM, Withey SB (1976) Social indicators of well-being. Americans perceptions of life quality. Plenum Press, New York

    Book  Google Scholar 

  13. OMS, QOL Group (1993) Study protocol for World Health Organization project to develop a Quality of Life assessment instrument (WHOQOL). Qual Lif Res 2(2):153–159

    Google Scholar 

  14. Cowan LT, Van Wagenen SA, Brown BA, Hedin RJ, Seino-Stephan Y, Hall PC, et al (2013) Apps of steel: are exercise apps providing consumers with realistic expectations? A content analysis of exercise apps for presence of behavior change theory. Health Educ Behav 40(2):133–139

    Article  Google Scholar 

  15. Lister C, West JH, Cannon B, Sax T, Brodegard D (2014) Just a fad? Gamification in health and fitness apps. JMIR Serious Games 2(2):e9

    Article  Google Scholar 

  16. West JH, Hall PC, Hanson CL, Barnes MD, Giraud-Carrier C, Barrett J (2012) There’s an app for that: content analysis of paid health and fitness apps. J Med Internet Res 14(3):e72

    Article  Google Scholar 

  17. Robinson E, Higgs S, Daley AJ, Jolly K, Lycett D, Lewis A et al (2013) Development and feasibility testing of a smart phone based attentive eating intervention. BMC Public Health 13(1):639

    Article  Google Scholar 

  18. Worringham C, Rojek A, Stewart I (2011) Development and feasibility of a smartphone, ECG and GPS based system for remotely monitoring exercise in cardiac rehabilitation. PLoS ONE 6(2):e14669

    Article  Google Scholar 

  19. Marks DF (2002) Some observations on health and socio-economic status. In: Murray MM, Evans B, Willig C (eds) Healt psychology. Theory, research and practice. Sage press, London

    Google Scholar 

  20. Nes AA, van Dulmen S, Eide E, Finset A, Kristjánsdóttir OB, Steen IS, et al (2012) The development and feasibility of a web-based intervention with diaries and situational feedback via smartphone to support self-management in patients with diabetes type 2. Diabetes Res Clin Pract 97(3):385–393

    Article  Google Scholar 

  21. Dennison L, Morrison L, Conway G, Yardley L (2013) Opportunities and challenges for smartphone applications in supporting health behavior change: qualitative study. J Med Internet Res 15(4):e86

    Article  Google Scholar 

  22. Lyles CR, Harris LT, Le T, Flowers J, Tufano J, Britt D et al (2011) Qualitative evaluation of a mobile phone and web-based collaborative care intervention for patients with type 2 diabetes. Diabetes Technol Ther 13(5):563–569

    Article  Google Scholar 

  23. Rogers WA, Walker MJ (2016) Fragility, uncertainty, and healthcare. Theor Med Bioeth 37:71–83

    Article  Google Scholar 

  24. Benyon D (2012) Progettare l’interazione. Metodi e tecniche per il design di media interattivi. Pearson Italia, Milano

    Google Scholar 

  25. Preece J, Sharp H, Rogers Y (2015) Interaction design: beyond human-computer interaction. Wiley press, USA

    Google Scholar 

  26. Venkatesh V, Morris MG, Davis GB, Davis FD (2003) User acceptance of information technology: toward a unified view. MIS Q 27(3):425–478

    Article  Google Scholar 

  27. Brooke J (2013) SUS: a retrospective. J. Usability Stud 8(2):29–40

    Google Scholar 

  28. Finstad K (2010) The usability metric for user experience. Interact Comput 22:323–327

    Article  Google Scholar 

  29. Lewis JR, Utesch BR, Maher DE (2013) UMUX-LITE—when there’s no time for the SUS. In: Proceedings of CHI2013

    Google Scholar 

  30. Norman DA, Draper SW (eds) (1986) User centred system design. Erlbaum, Hillsdale, NJ

    Google Scholar 

Download references

Author information

Authors and Affiliations

  1. Department of History, Society and Human Studies, University of Salento, Via San Nicola, Lecce, Italy

    Andrea Fiorucci & Stefania Pinnelli

Authors
  1. Andrea Fiorucci
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Stefania Pinnelli
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Andrea Fiorucci .

Editor information

Editors and Affiliations

  1. CNR-IMM, Lecce, Italy

    Alessandro Leone

  2. CNR-IMM, Lecce, Italy

    Andrea Caroppo

  3. CNR-IMM, Lecce, Italy

    Gabriele Rescio

  4. CNR-IMM, Lecce, Italy

    Giovanni Diraco

  5. CNR-IMM, Lecce, Italy

    Pietro Siciliano

Rights and permissions

Reprints and permissions

Copyright information

© 2019 Springer Nature Switzerland AG

About this paper

Check for updates. Verify currency and authenticity via CrossMark

Cite this paper

Fiorucci, A., Pinnelli, S. (2019). RareBox App. Patient-Centered Monitoring System in the Self-management of Rare Diseases. In: Leone, A., Caroppo, A., Rescio, G., Diraco, G., Siciliano, P. (eds) Ambient Assisted Living. ForItAAL 2018. Lecture Notes in Electrical Engineering, vol 544. Springer, Cham. https://doi.org/10.1007/978-3-030-05921-7_26

Download citation

  • DOI: https://doi.org/10.1007/978-3-030-05921-7_26

  • Published:

  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-030-05920-0

  • Online ISBN: 978-3-030-05921-7

  • eBook Packages: EngineeringEngineering (R0)

Publish with us

Policies and ethics

Search

Navigation