None listed
Conditions
Brief summary
This is a one-time cross-sectional, online study, consisting in a patient survey and a patient caregiver survey. Adult and adolescent patients with AA, and the caregivers of adolescent AA patients (dyadic and non-dyadic caregivers), will be recruited to participate in the survey. The surveys will assess the psychosocial and life impacts and disease burden associated with AA. In order to increase sample size for the caregiver survey, caregivers will be allowed to participate in the survey even if their dependant adolescent with AA refuses or is unable to participate (ie, non-dyadic caregiver). Additional information about the adolescent with AA will be provided by the non-dyadic caregiver compared to the dyadic caregiver. The survey will use online screening questions to verify participants’ eligibility and invite potential participants to take part in the study. After consenting, data will be collected in the patient survey via a bespoke questionnaire on patient/caregiver characteristics (e.g., age, sex, socioeconomic status, race, and ethnicity), self-reported medical and treatment history, satisfaction with treatment, and validated instruments on disease severity and impact, psychosocial disorders, disease specific quality of life, and work and classroom productivity and impairment. IQVIA will collaborate with the Alopecia Areata Australia Foundation (AAAF) to recruit eligible patients with AA and caregivers, defined by inclusion and exclusion criteria below. The AAAF has nationally representative sample of AA patients and caregivers in their network. Participants will be invited to participate online via the AAAF’s closed Facebook page via post and via the AAAF newsletter distributed by email among AAAF registrants. until the sample size is met. AAAF was founded in 2010 with the purpose of improving the lives of people living with AA and their families in Australia. Recruitment is expected to last 8 weeks or until recruitment target is reached.
Interventions
This study is an observational study with no treatment intervention.
Data will be collected through a one-time cross-sectional survey (one timepoint)
The survey will use online screening questions to verify participants’ eligibility and invite potential participants to take part in the study by completing bespoke questionnaires. Caregivers can also opt in their dependant (12-17 years of age) to participate.
Recruitment is expected to take eight weeks (starting in March 2023) to reach the sample
This study is an observational study with no treatment intervention. Data will be collected through a one-time cross-sectional survey (one timepoint) The survey will use online screening questions to verify participants’ eligibility and invite potential participants to take part in the study by completing bespoke questionnaires. Caregivers can also opt in their dependant (12-17 years of age) to participate. Recruitment is expected to take eight weeks (starting in March 2023) to reach the sample size. Invitation to participate is going to be done by the AAAF (Alopecia Areata Australian Foundation) online channels. The survey takes 30 minutes to complete. The following variables are going to be collected per participant: 1) Adult patient questionnaire The survey will collect information on the following from adult patients with AA: Socio-demographic characteristics (for adolescent respondents, this information will be provided by the caregiver): Age; Sex; Race and ethnicity; Highest level of education completed; Employment status; State of residence; Household income in the previous year. Bank account details AA Medical history. (eg, symptoms onset, medically confirmed diagnosis, family history) Experience with AA; Treatment. Self-reported satisfaction with treatment. Coping mechanisms. Impact of AA on work Scalp Hair Assessment PRO™. AAPPO; AASIS WPAI/WPAI+CIQ; HADS. 2) Dependant adolescent patient questionnaire The survey will collect information on the following from adolescent patients with AA: AA Medical history (eg, symptoms onset, medically confirmed diagnosis, family history); Experience with AA; HRQoL. Scalp Hair Assessment PRO™. AAPPO; WPAI/WPAI+CIQ; HADS. 3) Caregiver survey a) Dyadic caregivers’ questionnaire For caregivers of adolescents who will participate in the survey, the survey will collect the following information: Caregiver socio-demographics: Age; Sex; Race and ethnicity; Highest level of education completed; Employment status; State of residence; Household income in the previous year. Bank account details Relationship with the AA adolescent; Socio-demographic characteristics of AA adolescent; Age; Sex; Race and ethnicity; Highest level of education completed; Employment status; State of residence; Household income in the previous year. Treatment (same variables as in the patient survey); Caregiver’s experience with adolescent’s AA; Caregiver’s treatment to cope with adolescent’s AA; Impact of adolescent’s AA on caregiver’s work. HRQoL: WPAI/WPAI+CIQ; HADS QLCCDQ b) Non-dyadic caregivers’ questionnaire For caregivers of adolescents who refuse or are unable to participate in the survey, the following information will be collected, in addition to the dyadic caregivers’ survey: AA Medical history. (eg, symptoms onset, medically confirmed diagnosis, family history) Experience with AA (same variables as in the patient survey);
Sponsors
Pfizer Australia Pty Ltd
Eligibility
Sex/Gender
All
Age
12 Years to No maximum
Healthy volunteers
No
Inclusion criteria
Patient survey • Self-reported medically confirmed diagnosis of AA for at least 3 months before the survey completion date (assessed via online screener) • For adolescents aged 12-17 years old, consent from parents/guardians and assent from the patients (assent form 12-14 years and 15-17 years) will be required, this will be obtained sequentially). Caregiver survey • Parent or legal guardian of a patient aged 12-17 years with self-reported medically confirmed diagnosis of AA for at least 3 months before the survey completion date
Exclusion criteria
Patients with a medical diagnosis of any form of cancer in the past 5 years or with a medical diagnosis of androgenetic alopecia (AGA) and patient or dependant with a self-reported medically confirmed diagnosis of AA for less than 3 months before the survey completion date Adolescents can only participate if caregiver has provided contact details on adolescent behalf
Outcome results
None listed