Quality of Life in Late-Treated Patients With Disorders of Sex Development: Insights for Patient-Centered Care

BACKGROUND The COVID-19 pandemic has raised unprecedented challenges in the management of patients with cancer and has increased the demands for digital health tools that, for example, could facilitate remote monitoring of patients. Based on this, the Gruppo Italiano Malattie Ematologiche dell’Adulto (GIMEMA) has recently developed a digital health tool dedicated to patients with hematologic malignancies: the GIMEMA-ALLIANCE platform. OBJECTIVE The main objectives of this web-based platform are to generate relevant data to better understand quality of life, symptoms, and medication adherence during the COVID-19 pandemic and postpandemic era; to develop a prospective real-life registry on outcomes of patients with hematologic cancer, with or without a diagnosis of COVID-19; and to facilitate patient-centered care in routine practice. METHODS The platform consists of physician- and patient-secure portals and enables electronic patient-reported outcome (ePRO) assessments with real-time graphical presentation to physicians of individual patient symptoms and quality-of-life outcomes. Automated alerts are sent to treating hematologists based on the following predetermined criteria: presence of clinically important problems and symptoms, problems with adherence to therapy, and risk of COVID-19 diagnosis. The platform also allows physicians to set up video consultations. Clinical information regarding disease and treatment as well as clinical and survival outcomes are also prospectively collected. RESULTS Recruitment of participants started in December 2020. As of April 2021, a total of 116 patients have been enrolled in this study. Use of this platform may help to improve patient-physician communication and help hematologists in the early recognition of clinically important problems and symptoms of their patients. More than 20 community and university-based hospitals have currently agreed to participate. In addition to patient-reported outcome data, the prospective collection of disease- and treatment-related information, as well as data on possible COVID-19 diagnosis and COVID-19 vaccination, will allow the development of a large database to also identify subgroups of patients at risk of poor outcomes. CONCLUSIONS Data generated via this platform will help to answer clinically relevant questions for patients with hematologic malignancies during the COVID-19 pandemic and postpandemic era. The use of the GIMEMA-ALLIANCE platform in routine practice may also contribute to enhancing patient-centered care. CLINICALTRIAL ClinicalTrials.gov NCT04581187; https://clinicaltrials.gov/ct2/show/NCT04581187 INTERNATIONAL REGISTERED REPORT PRR1-10.2196/25271

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Does Patient-centered Care Change Genital Surgery Decisions? The Strategic Use of Clinical Uncertainty in Disorders of Sex Development Clinics

Journal of Health and Social Behavior ◽

10.1177/0022146518802460 ◽

2018 ◽

Vol 59 (4) ◽

pp. 520-535 ◽

Cited By ~ 14

Author(s):

Stefan Timmermans ◽

Ashelee Yang ◽

Melissa Gardner ◽

Catherine E. Keegan ◽

Beverly M. Yashar ◽

...

Keyword(s):

Disorders Of Sex Development ◽

Patient Centered Care ◽

Patient Centered ◽

Genital Surgery ◽

Clinical Uncertainty ◽

Sex Development ◽

Audio Recordings ◽

Centered Care ◽

Patient Advocates ◽

Care Change

Genital surgery in children with ambiguous or atypical genitalia has been marred by controversies about the appropriateness and timing of surgery, generating clinical uncertainty about decision making. Since 2006, medical experts and patient advocates have argued for putting the child’s needs central as patient-centered care. Based on audio recordings of 31 parent–clinician interactions in three clinics of disorders of sex development, we analyze how parents and clinicians decide on genital surgery. We find that clinicians and parents aim for parent-centered rather than infant-centered care. Parents receive ambivalent messages about surgery: while clinicians express caution, they also present the surgery as beneficial. We examine how parents and clinicians reach agreement about surgery—differentiating parents who push strongly for surgery from parents who do not express any preconceived preferences about surgery and parents who resist surgery. We conclude that clinicians use clinical uncertainty about surgery strategically to direct parents toward perceived clinically appropriate decisions.

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