How are pain, quality of life and daily activities monitored in patients with hypophosphatasia (HPP)? This video recognises HPP as a disease that has a high disease burden and a substantial negative impact on quality of life. Dr Lampe, a paediatric neurologist from Germany, addresses the critical need for consistent monitoring of these factors in both adult and paediatric patients with HPP. She provides an overview of a range of assessment tools, such as the VABS-3, EQ-5D-5L, PedsQL, SF-10, BPI-SF, HAQ and SF-36v2; the use of these tools in studies and registries highlights the significant impact of HPP on patients' lives, who experience progressive and substantial pain and limitations in daily functioning.1 Dr Lampe advocates for a structured, multidisciplinary approach to patient care, with regular assessments by pain specialists and clinical care coordinators, to effectively manage the disease's impact on patients’ quality of life.

Misconception addressed within this educational session:

BPI, Brief Pain Inventory; EQ-5D-5L, EuroQol-5 Dimensions-5 Levels; HAQ, Health Assessment Questionnaire; PedsQL, Pediatric Quality of Life Inventory; SF-10, 10-item Short Form Health Survey for Children; SF-36v2, 36-item Short Form Health Survey version 2; VABS-3, Vineland Adaptive Behavior Scales.
Dahir KM, et al. Front Endocrinol (Lausanne). 2023;14:1138599. Szabo SM, et al. Orphanet J Rare Dis. 2019;14(1):85. Weber TJ, et al. Metabolism. 2016;65:1522–1530.

VIDEO HPP diagnosis: from patients’ perspectives As clinicians focus on clinical data/parameters, it is important to consider the realities of living with HPP – from the patient’s perspective. In this video, members of a family based in North Wales share their experiences living with the condition.

VIDEO HPP monitoring: from patients’ perspectives As clinicians focus on clinical data/parameters, it is important to consider how life with HPP goes on – from the patient’s perspective. In this video, Mel and Jenn, mother and daughter of a family based in North Wales, United Kingdom, discuss their experiences.