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Feasibility of smartphone-based digital phenotyping to measure visual function and mental health outcomes in patients with inherited retinal diseases.

Authors: Jones L, Higgins B, Devraj K, Crabb D, Thomas P, Moosajee M
Journal: NPJ digital medicine
mental health psychology open access

Abstract

Health-related quality of life (HRQoL) has emerged as an important outcome measure in healthcare research and practice []. For the purposes of this review, HRQoL is operationalized as the health-related component of quality of life, reflecting individuals’ perceived physical, psychological, and social functioning and well-being as affected by health conditions, symptoms, treatment, and healthcare []. This distinguishes HRQoL from the broader concept of quality of life (QoL), which may also encompass wider personal, social, cultural, economic, and environmental aspects of life []. HRQoL offers a comprehensive assessment of patients’ well-being, encompassing physical, mental, and social domains []. By focusing specifically on the impact of health and healthcare on daily functioning and perceived well-being, HRQoL provides valuable insights from the patient’s perspective []. In recent decades, there has been a growing recognition of the importance of HRQoL in informing clinical decision-making, healthcare policy, and resource allocation []. Also, HRQoL measures are increasingly utilized in clinical trials, observational studies, and health technology assessments to evaluate the effectiveness of interventions, compare treatment options, and guide patient-centered care []. Health technology assessments, in particular, have become indispensable tools for systematic healthcare priority setting, especially in resource-constrained settings like Africa []. Institutionalization efforts, supported by initiatives such as the Africa CDC’s Health Economics Program, aim to promote evidence-based decision-making amidst the continent’s dual challenge of a high disease burden and limited health budgets []. In this context, HRQoL measures, especially preference-based measures, such as the widely used EuroQol five-dimension (EQ-5D) instrument, play a pivotal role in evaluating the cost-effectiveness of interventions and generating quality-adjusted life years (QALYs) to inform resource allocation []. Africa faces a complex landscape of health challenges, including infectious diseases like HIV/AIDS and malaria, the rising prevalence of non-communicable diseases (NCDs) such as diabetes, mental disorders, among others []. The burgeoning dual burden of infectious diseases and NCDs is further exacerbated by socio-economic disparities [, ]. This dual epidemic contributes to significant morbidity and mortality, underscoring the need for comprehensive health evaluations that extend beyond clinical indicators []. Consequently, HRQoL measures offer valuable insights into how diseases and their treatments affect patients’ daily lives, informing interventions that can improve health outcomes and quality of life [].