Patient-centered assessment on disease burden, quality of life, and treatment satisfaction associated with acromegaly


Por: Liu, SQ, Adelman, DT, Xu, YP, Sisco, J, Begelman, SM, Webb, SM, Badia, X, Thethi, TK, Fonseca, V, Shi, LZ

Publicada: 1 mar 2018
Resumen:
The study aimed to assess the economic burden, health-related quality of life (HRQoL), and acromegaly treatment satisfaction in the USA. A web-based, cross-sectional survey was distributed to members of Acromegaly Community. Data related to comorbidities, treatment patterns, and treatment satisfaction were collected. The costs over the past 3 months included out-of-pocket cost, sick leave, leave of absence, direct loss of job due to acromegaly, unemployment, assistance to perform household chores, and family member loss of income. The HRQoL was assessed by Acromegaly Quality of Life (AcroQoL) and EQ-5D-3L questionnaires. Among 106 patients who completed the survey (mean age: 46 years, female: 76.4%), 44.3% presented with 5 comorbidities, and 90.6% reporting acromegaly-related symptoms. Compared with the low-symptom group 0-3 (n=41), the 4+ symptoms group (n=65) was more likely to have depression (OR=2.3, 95%CI 1.1 to 5.2) and cardiovascular disease (OR=5.8, 95%CI 2.0 to 16.7), and experienced higher costs (loss of job: $8874 vs $1717, P=0.02; unemployment disability: $17,102 vs $429, P=0.003; household chores: $2160 vs $932, P=0.0003; family members' income loss: $692 vs $122, P=0.03). The high-symptom group had lower HRQoL scores, compared with the low-symptom group (EQ-5D-3L: 0.53 vs 0.75, P<0.0001; AcroQoL: 27 vs 56, P<0.0001). Only 55.7% among patients requiring injections for acromegaly were satisfied. Patients with acromegaly who presented with multiple acromegaly-related symptoms were evidenced to have experienced higher economic burden and poorer quality of life than patients with the same diagnosis but fewer symptoms. The low rate of treatment satisfaction warrants need for further studies.

Filiaciones:
Liu, SQ:
 Tulane Univ, Sch Publ Hlth & Trop Med, Dept Global Hlth Management & Policy, New Orleans, LA USA

Adelman, DT:
 Northwestern Univ, Feinberg Sch Med, Dept Endocrinol, Chicago, IL 60611 USA

Xu, YP:
 Genentech Inc, US Med Affairs, San Francisco, CA USA

Sisco, J:
 Acromegaly Community, Grove, OK USA

Begelman, SM:
 Genentech Inc, US Med Affairs, San Francisco, CA USA

Webb, SM:
 Hosp Santa Creu & Sant Pau, Endocrinol Med Dept, Barcelona, Catalunya, Spain

 Univ Autonoma Barcelona, Dept Endocrinol, Barcelona, Spain

 Inst Salud Carlos III, Ctr Invest Biomed Red Enfermedades Raras, Madrid, Spain

Badia, X:
 Inst Salud Carlos III, Ctr Invest Biomed Red Enfermedades Raras, Madrid, Spain

 Omakase Consulting, Barcelona, Spain

 Univ Barcelona, Barcelona, Spain

Thethi, TK:
 Tulane Univ, Dept Med, Hlth Sci Ctr, New Orleans, LA 70118 USA

Fonseca, V:
 Tulane Univ, Dept Med, Hlth Sci Ctr, New Orleans, LA 70118 USA

Shi, LZ:
 Tulane Univ, Sch Publ Hlth & Trop Med, Dept Global Hlth Management & Policy, New Orleans, LA USA
ISSN: 10815589





JOURNAL OF INVESTIGATIVE MEDICINE
Editorial
BMJ PUBLISHING GROUP, BRITISH MED ASSOC HOUSE, TAVISTOCK SQUARE, LONDON WC1H 9JR, ENGLAND, Estados Unidos America
Tipo de documento: Article
Volumen: 66 Número: 3
Páginas: 653-660
WOS Id: 000428916200003
ID de PubMed: 29151042

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