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

Abstract

Purpose

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.

Methods

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).

Results

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.

Conclusions

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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Notes

  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.

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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). https://doi.org/10.1007/s11136-014-0846-x

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Keywords

  • Patient engagement
  • Quality of life
  • Cultural issues
  • Qualitative research
  • Chronic disease