Clinical Impact of VOCs | RethinkSickleCellDisease.com

Results From the Sickle Cell
World Assesment Survey
(SWAY)

Understanding the Current Burdens of Sickle Cell
Disease and Unmet Needs

Study Design

90% of patients reported experiencing VOCs in the previous 12 months¹

VOCs are the clinical hallmark of SCD. One or more VOCs have been associated with an increased risk of death at an earlier age. Vaso-occlusion and VOCs can lead to end-organ damage and multiorgan failure.^2-4

Patients with SCD managed their VOCs differently, with approximately one-quarter not seeking medical assistance despite the potential risk of life-threatening complications⁵

Patients who self-managed their VOCs, primarily did so with⁵:

73%

Rest/sleep

72%

Fluid intake

58%

Opioid-based medicines

49%

Warm baths/showers

PHYSICAL

PSYCHOLOGICAL

HOME LIFE

OCCUPATIONAL/
EDUCATIONAL

Patients experiencing VOCs reported a wide range of other negative symptoms affecting their daily lives¹

Chronic Pain^1†

Experienced 2.8 days on
average per week

*Signs/symptoms and complications included in the survey were selected by the steering committee.¹

^†Reported as background pain.¹

Impact of physical activities¹

61%

of patients avoided
intense physical activity

26%

of patients avoided
mild physical activity

Most common concerns of patients during exercise¹

Pain

58%

Exhaustion

55%

Dehydration

47%

60% of patients reported that SCD had a high impact on their emotional well-being¹

Nearly 44% of patients reported feelings of anxiety because of SCD¹

49%

Stressed¹

45%

Depressed¹

48%

Worried about
dying¹

44%

Anxious/nervous¹

45%

Feel worse than
what doctor thinks¹

44%

Helpless¹

Only 36% of patients received emotional support from a psychiatrist, psychologist, or counselor—but 62% report a desire to receive this type of support¹

On average, 36% of patients reported that SCD had an impact on their ability to perform household activities¹

Impact of SCD on employed patients

Impact of SCD on patients not employed

Impact of SCD on students

Only
33%
of patients with SCD
were employed (full-
or part-time)¹

32%
Of patients with SCD
were NOT employed¹

35%
of patients with SCD
were students¹

SCD HAD A NEGATIVE IMPACT ON PATIENTS’ ABILITY TO STAY EMPLOYED

Missed Work

8.3 hours of work
missed each week, on average, were
reported by employed patients¹*

*On average, in the 7 days before survey completion.¹

Reduced Income

53% of patients
believed their income would be higher if
they did not have SCD¹

References: 1. Osunkwo I, Andemariam B, Inusa B, et al. Impact of sickle cell disease symptoms on patients’ daily lives: interim results from the International Sickle Cell World Assessment Survey (SWAY). Poster presented at: 61st Annual Meeting & Exposition; December 7-10, 2019; Orlando, Fl. 2. Darbari DS, Wang Z, Kwak M, et al. Severe painful vaso-occlusive crises and mortality in a contemporary adult sickle cell anemia cohort study. PLoS One. 2013;8(11):e79923. doi: 10.1371/journal.pone.0079923. 3. Conran N, Franco-Penteado CF, Costa FF. Newer aspects of the pathophysiology of Sickle cell disease vaso-occlusion. Hemoglobin. 2009;33(1):1-16. 4. Piel FB, Steinberg MH, Rees DC. Sickle cell disease. N Engl J Med. 2017;376(16):1561-1573. 5. James J, Andemariam B, Inusa B, et al. Management strategies and satisfaction levels in patients with sickle cell disease: interim results from the International Sickle Cell World Assessment Survey (SWAY). Poster presented at: 61st Annual Meeting & Exposition; December 7-10, 2019; Orlando, Fl. 6. Data on file. Novartis Pharmaceuticals Corp; 2019.