New Analysis Demonstrates Impaired Work Productivity and Increased Unemployment Rates in Adults with X-linked Hypophosphatemia (XLH)
Kyowa Kirin's XLH Disease Monitoring Program (DMP) has revealed significant employment challenges for adults with X-linked Hypophosphatemia (XLH). The study, published in JBMR Plus, shows that 31% of working-age adults with XLH were unemployed, a rate 8 times higher than the US general population. Among those employed, 60% worked in light or sedentary roles. The analysis also found that individuals with more past orthopedic surgeries and worse physical function were less likely to be employed.
These findings highlight the substantial burden of XLH on patients' lives, particularly in the workplace. The DMP, a 10-year observational study, aims to advance understanding of XLH through real-world research. Additional findings will be presented at the American Society for Bone and Mineral Research annual meeting in Toronto, September 27-30.
Il Programma di Monitoraggio della Malattia XLH di Kyowa Kirin ha rivelato sfide occupazionali significative per gli adulti con ipofosfatemia legata all'X (XLH). Lo studio, pubblicato su JBMR Plus, mostra che il 31% degli adulti in età lavorativa con XLH era disoccupato, un tasso 8 volte superiore alla popolazione generale degli Stati Uniti. Tra quelli impiegati, il 60% lavorava in ruoli leggeri o sedentari. L'analisi ha anche riscontrato che le persone con un maggior numero di interventi ortopedici passati e una funzione fisica peggiore avevano meno probabilità di essere occupate.
Questi risultati evidenziano il notevole onere dell'XLH sulla vita dei pazienti, in particolare sul posto di lavoro. Il DMP, uno studio osservazionale di 10 anni, mira a migliorare la comprensione dell'XLH attraverso la ricerca nel mondo reale. Risultati aggiuntivi saranno presentati all'incontro annuale della Società Americana per la Ricerca sulle Ossa e sui Minerali a Toronto, dal 27 al 30 settembre.
El Programa de Monitoreo de la Enfermedad XLH de Kyowa Kirin ha revelado desafíos laborales significativos para los adultos con hipofosfatemia ligada al X (XLH). El estudio, publicado en JBMR Plus, muestra que el 31% de los adultos en edad laboral con XLH estaba desempleado, una tasa 8 veces más alta que la población general de EE. UU.. Entre los empleados, el 60% trabajaba en roles ligeros o sedentarios. El análisis también encontró que las personas con más cirugías ortopédicas pasadas y peor función física tenían menos probabilidades de estar empleadas.
Estos hallazgos destacan la carga considerable de la XLH en la vida de los pacientes, particularmente en el lugar de trabajo. El DMP, un estudio observacional de 10 años, busca avanzar en la comprensión de la XLH a través de la investigación del mundo real. Hallazgos adicionales se presentarán en la reunión anual de la Sociedad Americana para la Investigación Ósea y Mineral en Toronto, del 27 al 30 de septiembre.
교와 키린의 XLH 질병 모니터링 프로그램(DMP)은 X-연관 저인산혈증(XLH) 성인에게 중요한 고용 문제를 드러냈습니다. JBMR 플러스에 발표된 연구에 따르면, XLH가 있는 근로 연령 성인의 31%가 실직 상태였습니다, 이는 미국 일반 인구보다 8배 높은 비율입니다. 취업자의 경우, 60%가 가벼운 또는 앉아서 하는 일에 종사했습니다. 분석 결과, 과거에 더 많은 정형외과 수술을 받은 사람들과 신체 기능이 나쁜 경우 취업할 가능성이 낮은 것으로 나타났습니다.
이러한 발견은 환자들의 삶, 특히 직장에서 XLH가 미치는 상당한 부담을 강조합니다. 10년 관찰 연구인 DMP는 실제 연구를 통해 XLH에 대한 이해를 증진시키는 것을 목표로 합니다. 추가 발견 사항은 9월 27일부터 30일까지 토론토에서 열리는 미국 뼈 및 미네랄 연구회 연례 회의에서 발표될 예정입니다.
Le Programme de Suivi de la Maladie XLH de Kyowa Kirin a révélé des défis d'emploi significatifs pour les adultes atteints d'hypophosphatémie liée à l'X (XLH). L'étude, publiée dans JBMR Plus, montre que 31 % des adultes en âge de travailler avec XLH étaient au chômage, un taux 8 fois plus élevé que celui de la population générale des États-Unis. Parmi ceux qui étaient employés, 60 % travaillaient dans des postes légers ou sédentaires. L'analyse a également révélé que les individus ayant subi davantage d'interventions orthopédiques dans le passé et présentant une fonction physique dégradée avaient moins de chances d'être employés.
Ces résultats soulignent le fardeau considérable de l'XLH sur la vie des patients, en particulier sur le lieu de travail. Le DMP, une étude d'observation de 10 ans, vise à améliorer la compréhension de l'XLH grâce à des recherches sur le terrain. Des résultats supplémentaires seront présentés lors de la réunion annuelle de l'American Society for Bone and Mineral Research à Toronto, du 27 au 30 septembre.
Das XLH-Krankheitsüberwachungsprogramm (DMP) von Kyowa Kirin hat erhebliche Beschäftigungsprobleme für Erwachsene mit X-gebundener Hypophosphatämie (XLH) aufgezeigt. Die in JBMR Plus veröffentlichte Studie zeigt, dass 31% der erwerbsfähigen Erwachsenen mit XLH arbeitslos waren, eine Quote, die 8-mal höher ist als die der allgemeinen US-Bevölkerung. Unter den Beschäftigten arbeiteten 60% in leichten oder sitzenden Berufen. Die Analyse ergab auch, dass Personen mit mehr früheren orthopädischen Eingriffen und schlechterer körperlicher Funktion weniger wahrscheinlich beschäftigt waren.
Diese Ergebnisse verdeutlichen die erhebliche Belastung, die XLH für das Leben der Patienten, insbesondere am Arbeitsplatz, darstellt. Das DMP, eine 10-jährige Beobachtungsstudie, zielt darauf ab, das Verständnis von XLH durch realitätsnahe Forschung zu erweitern. Weitere Ergebnisse werden auf dem jährlichen Treffen der American Society for Bone and Mineral Research in Toronto vom 27. bis 30. September präsentiert.
- Kyowa Kirin is conducting a 10-year observational study (XLH DMP) to advance understanding of XLH
- The study provides real-world evidence on the impact of XLH on patients' lives
- Findings are published in a peer-reviewed journal (JBMR Plus)
- Additional findings will be presented at a major scientific conference (ASBMR)
- 31% of working-age adults with XLH were unemployed, 8 times higher than the US general population
- 15% of working-age adults with XLH were receiving disability payments
- 60% of employed XLH patients were to light or sedentary roles
- Study results may have generalizability outside the US
Findings from XLH Disease Monitoring Program (DMP) published in Journal of Bone and Mineral Research (JBMR Plus)
DMP is a global effort, supported by Kyowa Kirin, to advance understanding and care of XLH through real-world research
Additional findings at American Society for Bone and Mineral Research annual meeting in
X-linked hypophosphatemia is a rare, genetic, progressive, phosphate-wasting disorder that can cause skeletal abnormalities, stiffness, pain, and impaired physical function.[1] This analysis of baseline data from the XLH DMP (N=281) showed that
Additionally, individuals with a higher number of past orthopedic surgeries, and those with worse physical function, were less likely to be employed. Among those employed (n=193), the majority (
"These findings highlight the substantial burden of XLH, which impacts multiple aspects of affected individuals' lives. Exploring real-world experiences helps to expand understanding of the disease beyond clinical endpoints to outcomes that are meaningful to patients," said lead author, Professor Aliya Khan MD, McMaster University,
A disease monitoring program provides an alternative to a traditional registry and extensive post-marketing studies and uses a collaborative, multi-stakeholder approach to monitor disease manifestations over an extended period, without limiting participants based on treatment received.
"Kyowa Kirin is committed to generating real-world evidence that builds greater understanding of the XLH patient experience and the effectiveness of treatment on outcomes relevant to patients and clinicians, in both the short and long term," said Ben Johnson, study author and director of global health economics and outcomes research at Kyowa Kirin. "We look forward to sharing further findings from the XLH DMP and other real-world studies at the American Society for Bone and Mineral Research annual meeting in September."
This study was designed to investigate the association of patient characteristics and work productivity; causality was not assessed and should not be inferred based on these findings. The study population was predominantly from the US (
About the XLH Disease Monitoring Program
The XLH DMP is an international, prospective, 10-year, longitudinal, observational study of adults and children with XLH (NCT03651505) designed to characterize XLH disease presentation and progression, and prospectively assess changes over time in biochemical, clinical, and patient/caregiver-reported outcomes in a representative population. The DMP steering committee includes clinical experts in XLH, patient advocates from the XLH Network, and representatives from Kyowa Kirin and Ultragenyx Pharmaceutical.
About X-linked hypophosphatemia
X-linked hypophosphatemia is a rare, lifelong, genetic disease that can impact the bones and muscles in both children and adults. In individuals with XLH, the body doesn't hold on to enough phosphorus, which is an essential mineral for bone health. This is due to the production of excess fibroblast growth factor 23 (FGF23), causing the body to release too much phosphorus through the urine. When phosphorus levels are too low (hypophosphatemia), it can cause the softening and weakening of growing bones in children (rickets) and of mature bones in adults (osteomalacia). In children, XLH typically appears as bowed legs or knock knees. Over time, bone weakening can also lead to bone abnormalities in the legs, delayed growth, and short stature. In adults, XLH may cause osteomalacia, fractures and pseudo-fractures, and hypophosphatemia.
About Kyowa Kirin
Kyowa Kirin aims to discover novel medicines with life-changing value. As a
References
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1 Beck-Nielsen S.S. et al. FGF23 and its role in X-linked hypophosphatemia-related morbidity. Orphanet J Rare Dis. 2019
2 US Bureau of Labor Statistics. Labor Force Statistics from the Current Population Survey.
3 Unemployment rates, Euro Area Unemployment Rate. June 2024.
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SOURCE Kyowa Kirin
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