Patient data sharing for the improvement of healthcare and medical research: towards a moral duty of patients to share health-related data?

The project answers to the following central research question: ‘How would a moral duty of patients to transfer (health) data for the benefit of health care improvement, research, and public health in the eHealth sector sit within the existing confidentiality, privacy, and data protection legislations?’. The improvement of healthcare services, research, and public health relies on patient data, which is why one might raise the question concerning a potential moral responsibility of patients to transfer data concerning health. Such a responsibility logically would have subsequent consequences for care providers concerning the further transferring of health data with other healthcare providers or researchers and other organisations (who also possibly transfer the data further with others and other organisations). Otherwise, the purpose of the patients’ moral duty, i.e. to improve the care system and research, would be undermined. Albeit the arguments that may exist in favour of a moral responsibility of patients to share health-related data, there are also some moral hurdles that come with such a moral responsibility. Furthermore, the existing European and national confidentiality, privacy and data protection legislations appear to hamper such a possible moral duty, and they may need to be reconsidered to unlock the full use of data for healthcare and research.

Profilo psicopatologico e qualità della vita in bambini e adolescenti narcolettici: studio caso-controllo

Scopo del nostro lavoro è stato descrivere ed inquadrare gli aspetti psico-comportamentali e la qualità di vita della narcolessia in età evolutiva. Metodi: Abbiamo pertanto disegnato uno studio caso-controllo comprendente 30 pazienti narcolettici, 39 epilettici, e 39 controlli sani, appaiati per sesso e età. Risultati: La nostra popolazione di bambini e adolescenti affetti da narcolessia mostra un aumento delle problematiche internalizzanti. I due gruppi patologici hanno in comune punteggi più elevati rispetto ai controlli per i disturbi d’ansia, le difficoltà attentive e di socializzazione, i disturbi oppositivo-provocatori. Ciò che distingue, invece, i pazienti narcolettici, sono gli aspetti di ritiro e depressione, la tendenza alla somatizzazione, i problemi del pensiero ed i disturbi affettivi. Fattori di rischio psicopatologici per i giovani narcolettici sono risultati essere l’esordio precoce, il ritardo diagnostico, il sonno notturno disturbato, la minor latenza di sonno all’addormentamento, un maggior numero di SOREMP all’MSLT. Dall’altro lato la terapia farmacologica, un maggior numero di sonnellini spontanei e la durata di malattia, sembrano influenzare positivamente l’evoluzione comportamentale. La salute psicosociale dei giovani narcolettici, inoltre, risulta essere peggiore rispetto ai controlli sani, mentre la salute fisica non mostra differenze. I problemi internalizzanti influenzano negativamente tutti gli ambiti della salute di questi ragazzi, mentre la durata di malattia sembra migliorare il funzionamento scolastico. Conclusioni: Il nostro lavoro conferma che i giovani narcolettici presentano un maggior rischio psicopatologico sia rispetto ai controlli sani sia rispetto un’altra patologia neurologica cronica. Se da un lato alcuni aspetti comportamentali possono essere giustificati come una reazione adattativa verso una patologia neurologica invalidante, dall’altro un quadro distimico caratterizzato da ritiro e lamentele somatiche, sembra essere tipico dei bambini ed adolescenti narcolettici.

Youth psychosocial adjustment in the context of parental illness: risk and protective factors

Young carers might experience both psychological distress and positive changes from living with their chronically ill parent. However, little is known about why some young carers do well with their situation and experience positive outcomes, whereas others do not. In this regard, this dissertation aims to investigate how parental chronic illness affects young carers’ psychosocial adjustment through risk (i.e., unmet needs) and protective factors (i.e., benefit finding, emotion regulation). This main goal has been addressed by conducting three studies presented in Chapters 2–4. Chapter 2 has examined the mediating role of unmet needs on the relationship between illness unpredictability and youth psychosocial adjustment (i.e., quality of life and internalizing problems). In this regard, it has been found that levels of unmet needs significantly mediated the relationship between illness unpredictability and offspring health-related quality of life. In the systematic review with meta-analysis presented within Chapter 3, it has been sought to investigate the mediating role of the protective factors (i.e., benefit finding and emotion regulation) in the relationship between caregiving components and youth psychosocial adjustment in young carers. This study has shown the significant associations between caregiving components and psychosocial adjustment in young carers not only directly, but also indirectly through protective factors. Finally, to expand on previous findings, a qualitative study in Chapter 4 has examined the unique experiences of young carers, as well as the effects of the COVID-19 global pandemic. This study has yielded a deeper understanding of how protective factors may be operated during young carers’ lived experiences before and during the COVID-19 global pandemic. Overall, this dissertation has shed light on the pivotal role played by risk and protective factors in caregiving components that serve as key determinants that can enhance positive psychosocial outcomes as well as concurrently mitigate adverse psychosocial consequences among young carers.