Background: The impact of ITP on patient (pt) QoL is multidimensional, broadly encompassing daily activities, emotional health, and work life. Health-related QoL has been shown to be substantially reduced in ITP pts relative to healthy controls, yet the full impact of ITP on affected pts is not well-defined.
Aims: I-WISh studied the burden of ITP and its impact on QoL using a global pt and physician (MD) sampling frame. This analysis reports the impact of ITP on QoL, emotional health, and work productivity, and evaluates similarities and differences between pt and MD viewpoints.
Methods: I-WISh is a cross-sectional survey of ITP pts, recruited via MDs and pt support groups, and MDs recruited via local fieldwork agencies. Participants (pts and MDs) completed a 30-minute online survey that included demographics and the impact of ITP on QoL, emotional health, work productivity, and need for caregivers. A steering committee of expert MD and pt advocacy leads specializing in ITP designed and endorsed survey materials.
Results: 1491 pts from 12 countries completed the survey; 65% were female, mean (SD) age was 47 (16) years. 472 MDs from 13 countries completed the survey; 56% were university or teaching hospital based, with a mean (SD) ITP pt caseload of 34 (50) and a mean (SD) of 18 (36) newly-diagnosed pts in the past year.
Overall, 84% (n=1258/1489) of pts reported that ITP reduced their energy levels, 77% (n=1149/1489) said ITP reduced their capacity to exercise, 75% (n=1116/1489) said ITP limited their ability to perform daily tasks, and 70% (n=1035/1485) said ITP impaired their social life. The proportion of pts reporting an impact of ITP on their QoL increased with symptom burden (Figure A); 98% of pts (n=298/303) with the greatest symptom burden reported an impact on energy levels and >90% reported an impact of ITP for 6/10 questions. MDs perceived potential bleeding as having the greatest impact on pt QoL (scored ≥5 on a 7-point Likert scale, where 7=great deal), with 88%, 73%, and 69% perceiving concerns of increased bleeding risk during sport, travel, and sex, respectively, as areas in which pt QoL could be affected. Fewer MDs than pts felt that ITP would greatly impact daily activities (52% vs 75%) or family and social life (45% vs 70%). 82% of MDs indicated they either do or would use a pt QoL tool at least every 6 months to monitor pts.
Almost half (49%; n=731) of all pts stated ITP had a high impact on their emotional well-being (score ≥5 on 7-point Likert scale, where 7=great deal), with 63% (n=944) worried their condition would worsen. More pts with very high symptom burden reported high emotional impact (75%; n=227/303), with 85% (n=259/303) worrying about their condition worsening. MDs gave similar results to pts for emotional impact and considered anxiety about platelet counts the primary cause (85%).
Nearly half of pts who worked (43%; n=383/894) reported that ITP affects their work productivity (score ≥4 on a 10-point scale, where 10=completely prevented from working), with 24% (n=212/889) having missed ≥6 hours' work in the week prior to survey completion. 48% (n=715/1491) of all pts had either reduced or seriously considered reducing their hours at work, and 21% (n=306/1491) had considered terminating their employment because of ITP (Figure B). Despite this, 62% (n=554/888) work >30 hours/week. Pts with very high symptom burden (n=303) reported greater impact on their work, with 69% either having reduced or seriously considering reducing their hours and 43% having considered terminating employment.
Over half of pts (52%) reported needing care assistance, with their spouse being the main caregiver (59%; n=461/775), requiring an average of 16.3 hours of support in a week. Caregivers provided companionship (69%; n=534/775), helped with household chores (55%; n=429/775), and aided transportation (50%; n=386/775).
Summary/conclusions: I-WISh demonstrates that most ITP pts experience substantially impaired QoL, with daily activities, social interactions, emotional well-being, and working lives all affected. Pts frequently report severe fatigue and pts with high ITP symptom burden were particularly affected, with nearly all pts reporting substantially reduced energy levels. Pts also worried about their condition worsening and had reduced work capacity. These results highlight the need for MDs to consider the impact of ITP disease burden on all aspects of individual pts' lives during management of ITP.
Cooper:Amgen, Novartis: Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees. Kruse:Novartis/ITP: Consultancy; Rigel/ITP: Honoraria; Amgen/ITP: Consultancy. Watson:Novartis: Membership on an entity's Board of Directors or advisory committees. Bussel:Rigel: Consultancy, Research Funding; Protalex: Consultancy; Momenta: Consultancy; Prophylix: Consultancy, Research Funding; Amgen Inc.: Consultancy, Research Funding; Novartis: Consultancy, Research Funding; Uptodate: Honoraria. Ghanima:Amgen, Novartis: Honoraria, Membership on an entity's Board of Directors or advisory committees; Bayer, BMS, Novartis: Research Funding. Arnold:Novartis: Consultancy, Research Funding; Novartis: Consultancy, Research Funding; UCB: Consultancy; Bristol Myers Squibb: Research Funding; Amgen: Consultancy, Research Funding; UCB: Consultancy; Amgen: Consultancy, Research Funding; Bristol Myers Squibb: Research Funding. Santoro:Bayer, CSL, Novo Nordisk, Pfizer, Shire, Sobi: Other: advisory boards, Speakers Bureau; Grifols, Gilead: Other: advisory boards; Amgen, Glaxo: Speakers Bureau. Tomiyama:Sysmex Corporation: Consultancy; Kyowa Hakko Kirin Co., Ltd.: Honoraria; Novartis Pharma Co., Ltd.: Honoraria, Membership on an entity's Board of Directors or advisory committees; Chugai Pharmaceutical Co., Ltd.: Honoraria. Waller:Novartis: Consultancy. Bailey:Novartis: Consultancy. Taylor-Stokes:Novartis: Consultancy. Stankovic:Novartis: Employment. Provan:Amgen, Novartis: Honoraria, Research Funding.
Asterisk with author names denotes non-ASH members.