Associations of quality of life, pain, and self-reported arthritis with age, employment, bleed rate, and utilization of hemophilia treatment center and health care provider services: results in adults with hemophilia in the HERO study

Abstract

Introduction: Severe hemophilia and subsequent hemophilic arthropathy result in joint pain and impaired health-related quality of life (HRQoL). Assessment of HRQoL in persons with hemophilia (PWH), including underlying factors that drive HRQoL differences, is important in determining health care resource allocation and in making individualized clinical decisions.

Aim: To examine potential associations between HRQoL, pain interference, and self-reported arthritis and age, employment, activity, bleed frequency, and hemophilia treatment center and health care professional utilization.

Methods: PWH (age ≥18 years) from ten countries completed a 5-point Likert scale on pain interference over the previous 4 weeks, the EQ-5D-3L scale (mobility, usual activities, self-care, pain/discomfort, anxiety/depression) including a health-related visual analog scale (0-100, coded as an 11-point categorical response).

Results: Pain interference (extreme/a lot) was higher in PWH aged >40 years (31%) compared to those aged 31-40 years (27%) or ≤30 years (21%). In an analysis of eight countries with home treatment, PWH who reported EQ-5D mobility issues were less likely to be employed (53% vs 79%, with no mobility issues). Median annual bleed frequency increased with worsening EQ-5D pain or discomfort. The percentage of PWH with inhibitors reporting visual analog scale scores of 80-90-100 was lower (20%) than those without inhibitors (34%). Median bleed frequency increased with pain. Globally, nurse and social worker involvement increased with disability and pain; physiotherapist utilization was moderate regardless of the extent of disability or pain.

Conclusion: Increased disability and pain were associated with increased age, lower employment, higher reported bleed frequency, and lower HRQoL.

Keywords: HERO; hemophilia; pain; quality of life.

Figure 1

Extent to which pain has interfered with daily life over the past 4 weeks. Notes: Statistical analyses were primarily descriptive and correlative in nature. (A) Global HERO population, (B) US HERO population, and (C) By country. Abbreviations: HERO, Hemophilia Experiences, Results and Opportunities; w/o, without.

Figure 2

“VAS health” score for patients with and without inhibitors. Notes: VAS was coded electronically as an 11-point categorical response based upon the nearest value (0–100). Statistical analyses were primarily descriptive and correlative in nature. (A) Global HERO population and (B) US HERO population. Abbreviations: HERO, Hemophilia Experiences, Results and Opportunities; PWH, persons with hemophilia; VAS, visual analog scale.

Figure 3

Employment and bleed frequency by EQ-5D, pain interference, and self-reported arthritis. Notes: Global HERO data shown in bar chart, US HERO data shown as diamonds above each scale. Statistical analyses were primarily descriptive and correlative in nature. ^aOne patient reporting EQ-5D mobility as “confined to bed” is not shown. ^bNo patient reported EQ-5D usual activities as “unable”. (A) Employment and (B) Bleed frequency. Abbreviations: HERO, Hemophilia Experiences, Results and Opportunities; PWH, patients with hemophilia.

Figure 4

HCP utilization by EQ-5D, pain interference, and self-reported arthritis. Notes: Global HERO data shown in bar chart, US HERO data shown as diamonds above each scale. Statistical analyses were primarily descriptive and correlative in nature. ^aTwo patients reporting EQ-5D mobility as “confined to bed” are not shown. ^bOne patient reporting EQ-5D usual activities as “unable to perform my usual activities” is not shown. Abbreviations: HCP, health care practitioner; HERO, Hemophilia Experiences, Results and Opportunities; PWH, patients with hemophilia.