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Engaging patients to recover life projectuality: an Italian cross-disease framework



Chronic disease is recognized as having a large impact on patient quality of life (QoL), which can be defined as an individual’s satisfaction or happiness with life in domains he or she considers important. Policy makers and clinicians recognize increasingly that patients can safeguard their QoL by making healthy lifestyle choices and being actively engaged in their health care. However, in the emphasis on promoting patient engagement to enhance patients’ QoL, there is no consensus regarding the relationship between QOL and patient engagement, resulting in a lack of shared guidelines among clinicians on interventions. Furthermore, no studies have provided an in-depth exploration of the perspective of patients with chronic conditions who are engaged in their health care and their requirements to achieve an improved QoL. Given this theoretical gap, the present study attempted to explore the patient engagement experience and its relationship with patient QoL in the context of the Italian healthcare system and in relation to different chronic diseases.


In-depth qualitative interviews on a sample of 99 patients with a wide variety of chronic conditions (heart failure, chronic obstructive pulmonary disease, stroke, diabetes, and cancer).


Patient engagement in health care can be defined as a context-based and cross-disease process that appears to enable patients to recover their life projectuality, which had been impaired by the onset of chronic disease. Successful patient engagement may also be related to a positive shift in the ways in which patients perceive self and life and experience empowerment to realize their life potential, thus improving quality of life. Patient engagement is a powerful concept capable of reflecting significant psychosocial changes that promote patient QoL along the care process. There appears to be theoretical and empirical justification for a broad definition of QoL.


QoL deeply depends on the patient ability to engage in their care and on the health expectations they have. We propose a model of the relation between patient engagement and patients’ trajectories in critical event responses and use it to illustrate a new perspective on QoL. This research showed the heuristic value patient engagement as a is a key concept in the promotion of a patients’ experience-sensitive QoL interventions and assessment measures.

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  1. According to the patient engagement model by Graffigna et al. [16, 17], patient engagement is a process featuring four sequential phases. In the phase of “blackout”, patients fall in an initial state of emotional, behavioral and cognitive blackout determined by the critical event, which is described as unexpected and out of their control. In the subsequent phase of “arousal”, patients are hyper attentive to every symptom produced by their body. Symptoms during this phase are perceived as an “alarm bell” that worries the patient and may instigate dysregulated emotional responses. The “adhesion” phase arrives when patients have acquired sufficient knowledge and behavioral skills to effectively adhere to medical prescriptions and feel sufficiently confident in their own emotional strength to cope with their condition. Finally, in the “eudaimonic project” phase, patients have fully accepted their condition and that the patient self is only one of their possible selves. They are also able to recognize internal resources that are useful for projecting satisfactory life trajectories for their future.


  1. Michel, J. P., Newton, J. L., & Kirkwood, T. B. (2008). Medical challenges of improving the quality of a longer life. JAMA, 299(6), 688–690. doi:10.1001/jama.299.6.688.

    Article  PubMed  Google Scholar 

  2. Rothrock, N. E., Hays, R. D., Spritzer, K., Yount, S. E., Riley, W., & Cella, D. (2010). Relative to the general US population, chronic diseases are associated with poorer health-related quality of life as measured by the patient-reported outcomes measurement information system (PROMIS). Journal of Clinical Epidemiology, 63(11), 1195–1204. doi:10.1016/j.jclinepi.2010.04.012.

    Article  PubMed Central  PubMed  Google Scholar 

  3. Öztürk, A., Şimşek, T. T., Yümin, E. T., Sertel, M., & Yümin, M. (2011). The relationship between physical, functional capacity and quality of life (QoL) among elderly people with a chronic disease. Archives of Gerontology and Geriatrics, 53(3), 278–283. doi:10.1016/j.archger.2010.12.011.

    Article  PubMed  Google Scholar 

  4. Naberan, K., Azpeitia, Á., Cantoni, J., & Miravitlles, M. (2012). Impairment of quality of life in women with chronic obstructive pulmonary disease. Respiratory Medicine, 106(3), 367–373. doi:10.1016/j.rmed.2011.09.014.

    Article  PubMed  Google Scholar 

  5. Graffigna, G., Vegni, E., Barello, S., Olson, K., & Bosio, C. A. (2011). Studying the social construction of cancer-related fatigue experience: The heuristic value of Ethnoscience. Patient Education and Counseling, 82(3), 402–409. doi:10.1016/j.pec.2010.12.017.

    Article  PubMed  Google Scholar 

  6. Barello, S., Graffigna, G., Lamiani, G., Luciani, A., Vegni, E., Saita, E., et al. (2013). How patients experience and give meaning to their cancer-related fatigue? A qualitative research in the Italian context. International Journal of Social Science Studies, 1(2), 8–19. doi:10.11114/ijsss.v1i2.44.

    Article  Google Scholar 

  7. Frisch, M. B. (2014). Quality-of-life-inventory. Encyclopedia of Quality of Life and Well-Being Research, 5374–5377.

  8. Phillips, D. (2012). Quality of life: Concept, policy and practice. Hibbard: Routledge.

    Google Scholar 

  9. Hibbard, J. H., & Greene, J. (2013). What the evidence shows about patient activation: Better health outcomes and care experiences; fewer data on costs. Health Affairs, 32(2), 207–214. doi:10.1377/hlthaff.2012.1061.

    Article  PubMed  Google Scholar 

  10. National health plan 2011–2013, Italian Ministry of Health. Accessed on 21 Sept 2014.

  11. Graffigna, G., Barello, S., Wiederhold, B. K., Bosio, A. C., & Riva, G. (2013). Positive Technology as a Driver for Health Engagement. Annual Review of Cybertherapy and Telemedicine 2013, 9. (A). doi:10.3233/978-1-61499-282-0-9.

  12. Barello, S., Graffigna, G.,Meyer, E.C. (2014) Ethics and etiquette in neonatal intensive care. A comment on the value of parents’ engagement in everyday ethics, and recommendations for further advancing the field. JAMA Pediatrics (in press).

  13. Graffigna, G., Barello, S., & Riva, G. (2013). How to make health information technology effective: The challenge of patient engagement. Archives of Physical Medicine and Rehabilitation, 94(10), 2034-2035. (B). doi:10.1016/j.apmr.2013.04.024.

  14. Wiederhold, B. K., Riva, G., & Graffigna, G. (2013). Ensuring the best care for our increasing aging population: Health engagement and positive technology can help patients achieve a more active role in future healthcare. Cyberpsychology, Behavior, and Social Networking, 16(6), 411–412. doi:10.1089/cyber.2013.1520.

    Article  Google Scholar 

  15. Barello, S., Graffigna, G., & Vegni, E. (2012). Patient engagement as an emerging challenge for healthcare services: Mapping the literature. Nursing Research and Practice,. doi:10.1155/2012/905934.

    PubMed Central  PubMed  Google Scholar 

  16. Barello, S., Graffigna, G., Vegni, E., Savarese, M., Lombardi, F., & Bosio, A. C. (2014). Engage me in taking care of my heart”: A grounded theory study on patient–cardiologist relationship in the hospital management of heart failure BMJ Open (in press).

  17. Graffigna, G., Barello, S., Libreri, C., & Bosio, C. A. (2014). How to engage type-2 diabetic patients in their own health management: implications for clinical practice. BMC Public Health, 14(1), 648.

    Article  PubMed Central  PubMed  Google Scholar 

  18. Barello, S., Graffigna, G., Savarese, M., & Bosio, A. C. (2014). Engaging patients in health management: Towards a preliminary theoretical conceptualization. Psicologia della Salute (in press).

  19. Graffigna, G., Barello, S., Triberti, S., Wiederhold, B. K., Bosio, A. C., Riva, G. (2014). Enabling eHealth as a pathway for patient engagement: A toolkit for medical practice. Cyberpsychology, Behavior, and Social Networking (submitted).

  20. Wagner, E. H., Austin, B. T., Davis, C., Hindmarsh, M., Schaefer, J., & Bonomi, A. (2001). Improving chronic illness care: Translating evidence into action. Health Affairs (Millwood), 20, 64–78.

    Article  CAS  Google Scholar 

  21. Bodenheimer, T., Wagner, E. H., & Grumbach, K. (2002). Improving primary care for patients with chronic illness: The chronic care model, Part 2. JAMA, 288, 1909–1914. doi:10.1001/jama.288.15.1909.

    Article  PubMed  Google Scholar 

  22. Patton, M. Q. (2005). Qualitative research. London: Wiley.

    Book  Google Scholar 

  23. Gibbs, G. R. (2002). Qualitative data analysis: Explorations with NVivo. Open University.

  24. Morse, J. M., Barrett, M., Mayan, M., Olson, K., & Spiers, J. (2002). Verification strategies for establishing reliability and validity in qualitative research. International Journal of Qualitative Methods, 1(2).

  25. Davies, D., & Dodd, J. (2002). Qualitative research and the question of rigor. Qualitative Health Research, 12(2), 279–289. doi:10.1177/104973230201200211.

    Article  PubMed  Google Scholar 

  26. Carr, A. J., Gibson, B., & Robinson, P. G. (2001). Is quality of life determined by expectations or experience? British Medical Journal, 322(7296), 1240–1243.

    Article  PubMed Central  CAS  PubMed  Google Scholar 

  27. Park, C. L. (2010). Making sense of the meaning literature: An integrative review of meaning making and its effects on adjustment to stressful life events. Psychological Bulletin, 136(2), 257. doi:10.1037/a0018301.

    Article  PubMed  Google Scholar 

  28. Theofilou, P. (2012). Health-related quality of life and illness perceptions in patients with chronic obstructive pulmonary disease. Journal of Pulmonary & Respiratory Medicine. doi:10.4172/2161-105X.1000e103.

  29. Bury, M., & Gabe, J. (Eds.). (2013). The sociology of health and illness: A reader. London: Routledge.

    Google Scholar 

  30. Stephens, C. (2011). Narrative analysis in health psychology research: Personal, dialogical and social stories of health. Health Psychology Review, 5(1), 62–78. doi:10.1080/17437199.2010.543385.

    Article  Google Scholar 

  31. Ahmed, S., Mayo, N. E., Corbiere, M., Wood-Dauphinee, S., Hanley, J., & Cohen, R. (2005). Change in quality of life of people with stroke over time: true change or response shift? Quality of Life Research, 14, 611–627.

    Article  PubMed  Google Scholar 

  32. Schwartz, C. E., Sprangers, M. A. G., Carey, A., & Reed, G. (2004). Exploring response shift in longitudinal data. Psychology & Health, 19, 51–69.

    Article  Google Scholar 

  33. Sprangers, M. A. G., van Dam, F. S. A. M., Broersen, J., et al. (1999). Revealing response shift in longitudinal research on fatigue. The use of the thentest approach. Acta Oncologica, 38, 709–718.

    Article  CAS  PubMed  Google Scholar 

  34. Schwartz, C. E., & Rapkin, B. D. (2004). Reconsidering the psychometrics of quality of life assessment in light of response shift and appraisal. Health and Quality of Life Outcomes, 2(1), 16.

    Article  PubMed Central  PubMed  Google Scholar 

  35. Rapkin, B. D., & Schwartz, C. E. (2004). Toward a theoretical model of quality-of-life appraisal: Implications of findings from studies of response shift. Health and Quality of Life Outcomes, 2(1), 14.

    Article  PubMed Central  PubMed  Google Scholar 

  36. Schwartz, C. E., Bode, R., Repucci, N., Becker, J., Sprangers, M. A., & Fayers, P. M. (2006). The clinical significance of adaptation to changing health: A meta-analysis of response shift. Quality of Life Research, 15(9), 1533–1550.

    Article  PubMed  Google Scholar 

  37. Sharpe, L., Butow, P., Smith, C., McConnell, D., & Clarke, S. (2005). Changes in quality of life in patients with advanced cancer: evidence of response shift and response restriction. Journal of Psychosomatic Research, 58(6), 497–504.

    Article  PubMed  Google Scholar 

  38. WHOQOL group. (1995). The World Health Organization quality of life assessment (WHOQOL): Position paper from the World Health Organization. Social Science and Medicine, 41(10), 1403–1409.

    Article  Google Scholar 

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Correspondence to Serena Barello.

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Barello, S., Graffigna, G. Engaging patients to recover life projectuality: an Italian cross-disease framework. Qual Life Res 24, 1087–1096 (2015).

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