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Original research
Patient-centered assessment on disease burden, quality of life, and treatment satisfaction associated with acromegaly
  1. Shuqian Liu1,
  2. Daphne T Adelman2,
  3. Yaping Xu3,
  4. Jillone Sisco4,
  5. Susan M Begelman3,
  6. Susan M Webb5,6,7,
  7. Xavier Badia7,8,
  8. Tina K Thethi9,
  9. Vivian Fonseca9,
  10. Lizheng Shi1
  1. 1Department of Global Health Management and Policy, School of Public Health and Tropical Medicine, Tulane University, New Orleans, Louisiana, USA
  2. 2Department of Endocrinology, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA
  3. 3US Medical Affairs, Genentech, South San Francisco, California, USA
  4. 4President, Acromegaly Community, Grove, Oklahoma, USA
  5. 5Endocrinology/Medicine Departments, Hospital de la Santa Creu i Sant Pau, Barcelona, Catalunya, Spain
  6. 6Department of Endocrinology, Universitat Autònoma de Barcelona (UAB), Barcelona, Spain
  7. 7Centro de Investigación Biomédica en Red de Enfermedades Raras, Instituto de Salud Carlos III, Madrid, Spain
  8. 8Omakase Consulting and University of Barcelona, Barcelona, Spain
  9. 9Department of Medicine, Tulane University Health Sciences Center, New Orleans, Louisiana, USA
  1. Correspondence to Dr Lizheng Shi, School of Public Health and Tropical Medicine, Tulane University, 1440 Canal Street, Suite 1900, New Orleans, LA 70112, USA; lshi1{at}tulane.edu

Abstract

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.

  • endocrinology
  • pituitary diseases
  • rare diseases
  • pituitary-adrenal system

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Footnotes

  • Contributors The content is solely the responsibility of the authors.

  • Funding This work was supported by funding from Genentech, a member of the Roche Group.

  • Competing interests DTA is on the nurse advisory board for Ipsen, Novartis, and Chiasma. SL and LS are employees of Tulane University, which received funding from Genentech for the current study. YX and SMB are employees of Genentech, a member of the Roche Group, and own Roche stock or stock options.

  • Patient consent Obtained.

  • Ethics approval The study protocol was approved by Tulane University Institutional Review Board.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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