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Neha Durgam,1 Triza Brion,1 Hannah B Lewis,1 Biba Tinga,2 Wilson Sanon,3 Mark Lundie,4 Chantal Cadieux4 1ICON Plc, Raleigh, NC, USA; 2Sickle Cell Disease Association of Canada (SCDAC), Toronto, ON, Canada; 3Association d’Anémie Falciforme du Québec, Montreal, Quebec, Canada; 4Pfizer Canada ULC, Kirkland, Quebec, CanadaCorrespondence: Neha Durgam, 4130 Parklake Ave, Suite 400, Raleigh, NC, 27612, USA, Tel +1 267 827 7447, Email Neha.Durgam@iconplc.com; nehadurgam@gmail.comPurpose: There is little research on care-seeking preferences during active pain crises for sickle cell disease (SCD) patients and their caregivers. The objective of this study was to identify relevant, patient or caregiver narratives of the pain crisis experience, to understand the factors that contribute to care-seeking during a pain crisis, and to identify preferences when making care-seeking decisions during a pain crisis.Patients and Methods: Qualitative semi-structured interviews were conducted with Canadian residents with a self-reported SCD diagnosis, who were either ≥ 18 years of age or an adolescent between the ages of 12– 18. Interviews were hosted virtually, audio-recorded, and transcribed verbatim.Results: A total of 23 individuals participated (74% female; 26% male), including six adolescents with parent dyads and 11 adults. Almost all (N = 21, 91.3%) participants were Black/African American. Participants mentioned many factors that influenced care-seeking decisions, mainly the symptom and pain experience; institutional factors (waiting time, the presence of and adherence to treatment guidelines, and the empathy or racial bias felt from medical staff); and subject-level factors (age and a flexibility in daily responsibilities).Conclusion: This study identified important institutional and subject-level considerations involved in care-seeking decisions. Most importantly, this study highlights the racial stigma faced by many patients when care-seeking in the ER and the lack of care protocol implemented, which hinders care-seeking in a dedicated medical facility. From the patient perspective, these are clear gaps to fill to encourage patients to seek and receive the care they deserve.Keywords: vaso-occlusive crisis, sickle cell disease, pain crisis, care-seeking, standard of care

Background An objective of the phase 3 HELP Study was to investigate the effect of lanadelumab on health‐related quality of life (HRQoL) in patients with hereditary angioedema (HAE). Methods Patients with HAE‐1/2 received either lanadelumab 150 mg every 4 weeks (q4wks; n = 28), 300 mg q4wks (n = 29), 300 mg every 2 weeks (q2wks; n = 27), or placebo (n = 41) for 26 weeks (days 0–182). The Angioedema Quality of Life Questionnaire (AE‐QoL) was administered monthly, consisting of four domain (functioning, fatigue/mood, fears/shame, nutrition) and total scores. The generic EQ‐5D‐5L questionnaire was administered on days 0, 98, and 182. Comparisons were made between placebo and (a) all lanadelumab‐treated patients and (b) individual lanadelumab groups for changes in scores (day 0–182) and proportions achieving the minimal clinically important difference (MCID, −6) in AE‐QoL total score. Results Compared with the placebo group, the lanadelumab total group demonstrated significantly greater improvements in AE‐QoL total and domain scores (mean change, −13.0 to −29.3; p, In the phase 3 HELP Study, HRQoL (health‐related quality of life) of patients with HAE (hereditary angioedema)‐1/2 was evaluated using the angioedema‐specific AE‐QoL (Angioedema Quality of Life Questionnaire). After 26 weeks, lanadelumab‐treated patients experienced significantly greater HRQoL improvements than placebo‐treated patients. Patients receiving lanadelumab 300 mg q2wks (every 2 weeks) were most likely to see clinically meaningful benefit, with 81% reaching the MCID (minimal clinically important difference) and seven times greater odds vs placebo for this achievement. Abbreviations: AE‐QoL, Angioedema Quality of Life Questionnaire; HAE, hereditary angioedema; HRQoL, health‐related quality of life; MCID, minimal clinically important difference; q2wks, every 2 weeks; q4wks, every 4 weeks.

BACKGROUND: Portion size is an important component of dietary advice for weight control, but little is known about what portion sizes people consider 'normal'. This study determined the effect of body mass index (BMI), gender, dietary restraint and liking of the food on personal and social portion size norms for a range of foods and the degree of certainty over the norms. METHODS: Thirty lean (BMI 20-25 kg m(-)(2)) and 30 obese (BMI 30-35 kg m(-)(2)) men and women (aged 18-60 years) viewed 17 different portion sizes of 12 foods on a computer screen on two occasions a week apart. Participants responded 'more' or 'less' to each photograph reflecting personal portion size preference or perceived portion sizes of others. Personal and social norms for portion sizes of each food were determined using the method of constant stimuli giving a sigmoidal curve of the probability of answering 'less' over a range of portion sizes. The slope of the sigmoid at the norm gave a measure of certainty about the norm. Regression models were used to examine the effect of BMI, gender, dietary restraint and liking of the food on personal norms, social norms, the relationship between norms, and the slopes. RESULTS: Personal norms were significantly larger in the obese (P=0.026), men (P