Personalized Management of Fatigue in Individuals With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long COVID Using a Smart Digital mHealth Solution: Protocol for a Participatory Design Approach.

BACKGROUND: Fatigue is the most common symptom in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID, impacting patients' quality of life; however, there is currently a lack of evidence-based context-aware tools for fatigue self-management in these populations. OBJECTIVE: This study aimed to (1) address fatigue in ME/CFS and long COVID through the development of digital mobile health solutions for self-management, (2) predict perceived fatigue severity using real-time data, and (3) assess the feasibility and potential benefits of personalized digital mobile health solutions. METHODS: The MyFatigue project adopts a patient-centered approach within the participatory health informatics domain. Patient representatives will be actively involved in decision-making processes. This study combines inductive and deductive research approaches, using qualitative studies to generate new knowledge and quantitative methods to test hypotheses regarding the relationship between factors like physical activity, sleep behaviors, and perceived fatigue in ME/CFS and long COVID. Co-design methods will be used to develop a personalized digital solution for fatigue self-management based on the generated knowledge. Finally, a pilot study will evaluate the feasibility, acceptance, and potential benefits of the digital health solution. RESULTS: The MyFatigue project opened to enrollment in November 2023. Initial results are expected to be published by the end of 2024. CONCLUSIONS: This study protocol holds the potential to expand understanding, create personalized self-management approaches, engage stakeholders, and ultimately improve the well-being of individuals with ME/CFS and long COVID. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/50157.

Concerns, Mental Health, and Quality of Life in Living Kidney Donation-Parent Donor Candidates Worry Less about Themselves.

Even though the majority of living kidney donor candidates appear in good mental health and show few concerns little is known concerning the influence of the type of donor-recipient relationship on donor candidates' specific concerns with regard to kidney donation. 136 donor candidates at Virgen del Rocío University Hospital of Seville filled in the Scale of Concerns Regarding Living Kidney Donation of whom 105 donor candidates and their corresponding recipients (105 patients with End-Stage Renal Disease) were further evaluated with regard to mental health (Hospital Anxiety and Depression Scale, Beck Depression Inventory-II) and quality of life (SF-36 Health Survey). As hypothesized recipients scored higher on depression and lower on quality of life. Donor candidates intending to donate to their children were significantly less concerned about risks of donation for themselves compared to donor candidates donating to siblings. Our findings highlight the importance of the type of donor-recipient relationship to understand specific concerns of donor candidates and optimize psychosocial assessment and support. From an evolutionary perspective parents lack of concern about their own well-being can be seen as an altruistic behavior to increase children's fitness at the (potential) expense of their own fitness.

Anxiety and concerns in Spanish living kidney donor candidates.

OBJECTIVES: Donating a kidney while alive is an experience associated with important benefits for donors and recipients. In view of the inexistence of Spanish investigations, we aimed: (a) to compare the anxiety and concerns of Spanish living kidney donor candidates relating to themselves as a function of gender and their level of concern about potential kidney recipients, and (b) to analyze whether the results regarding anxiety symptoms were clinically significant compared with a representative sample of the general Spanish population. METHODS: We selected 67 donor candidates whom we evaluated using the State Trait Anxiety Inventory (STAI) and the Scale of Concerns Regarding Living Kidney Donation. RESULTS: (1) The donor candidates who were more concerned about the recipients, in comparison with those who were less concerned, showed more state-anxiety and more concerns about themselves as donors, (2) the subgroup of more concerned females exhibited greater anxiety symptoms and concern about the consequences that nephrectomy could have on themselves, and (3) for all donor candidates, regardless of gender or level of concern about the recipient, the anxiety levels were not clinically significant. CONCLUSIONS: Anxiety in donor candidates is similar to or lower than the normative levels.