Medicine and Health Sciences Commons^™

Attitudes Toward Personal Health Data Sharing Among People Living With Sickle Cell Disorder, Exemplar For Study Of Rare Disease Populations, Rebecca Baines, Sebastian Stevens, Zainab Garba-Sani, Arunangsu Chatterjee, Daniela Austin, Simon Leigh

Journal of Patient-Centered Research and Reviews

Purpose: Rare conditions are often poorly understood, creating barriers in determining the value treatments can provide. This study explored barriers and facilitators to personal health data sharing among those with one particular group of rare hematologic disorders, ie, sickle cell disorder (SCD) and its variants.

Methods: A single online focus group among those > 18 years of age and living with SCD was conducted. Participants (N = 25) were recruited through a United Kingdom-based SCD charity. Discussions were transcribed verbatim, with data therein analyzed using inductive thematic analysis.

Results: Five primary motivators for sharing health data were identified: improving awareness; knowing …

Cross Cultural Adaptation And Validation Of A Self-Reporting Tool To Assess Health-Related Quality Of Life For Egyptians With Extremity Bone Sarcomas In Childhood Or Adolescence, Nesma Farid

Theses and Dissertations

Validated self-reporting tools are required to evaluate the functional outcome and health-related quality of life (HRQOL) for Egyptians who had extremity bone sarcomas in their childhood or adolescence. Thus, we pursued cross-cultural adaptation and validation of the pediatric Toronto Extremity Salvage Score (pTESS) and Toronto Extremity Salvage Score (TESS) to assess the physical function of children and adult survivors following surgeries of extremity bone sarcomas. Modified versions of pTESS and TESS, which contain additional mental domains, were developed to allow the evaluation of HRQOL using a specific instrument for childhood bone cancer. The internal consistency of the original pTESS and …

Understanding Quality Of Life In Patients With Acute Leukemia, A Global Survey, Zack Pemberton-Whiteley, Samantha Nier, Jan Geissler, Sophie Wintrich, Bregje Verhoeven, Rita O. Christensen, Sam Salek, Esther Natalie Oliva, Tatyana Ionova, Jennie Bradley

Journal of Patient-Centered Research and Reviews

Purpose: The Acute Leukemia Advocates Network (ALAN) sought to determine which factors are most associated with poor quality of life (QoL) in patients with acute leukemia and to determine key issues and unmet needs through administration of an online survey distributed worldwide via partner patient organizations.

Methods: ALAN developed a questionnaire informed by literature review and based extensively on the hematological malignancy-specific patient-reported outcomes (HM-PRO) measure to assess the impact of acute leukemia on QoL and its relationships with patients’ demographics, disease state, disease impact, and support from health care professionals. Univariate and multivariable statistical analysis was used to investigate …