Barriers to Care and QOL for CCCA Patients

Barriers to Healthcare and Quality of Life for Central Centrifugal Cicatricial Alopecia Patients

The purpose of the current project is twofold; first to determine what personal, historical, logistical, and environmental factors preclude women from obtaining medical care for CCCA hair loss. Because damage from CCCA is irreversible, early identification and treatment is paramount to limiting the negative ramifications of the disease. Second, to investigate how CCCA hair loss, a common occurrence in the Black population, can be a significant psychological impediment to lives of affected Black women. Based on previous research on the psychosocial impact of generalized hair loss in Black women, it is fair to consider that CCCA hair loss also leads to problems with self-esteem and participation in daily life activities. This research, the first of its kind, will add to existing knowledge of CCCA by investigating the quality of life and barriers to care of patients with this condition. The goal of this study is to illuminate what stands in the way of secondary and tertiary prevention of CCCA patients and tailor treatment strategies to address their needs. The results of this study will be instrumental in modifying dermatology resident training, adding to existing dermatology management guidelines, and even developing public health advocacy programming.

Study Overview

• Status: Completed
• Conditions: Central Centrifugal Cicatricial Alopecia; Scarring Alopecia; Central Centrifugal Scarring Alopecia
• Intervention / Treatment: Other: 53-Item Survey

• Study Type: Observational
• Enrollment (Actual): 34

Contacts and Locations

Study Locations

• United States
  • Illinois
    • Chicago, Illinois, United States, 60611
      • Northwestern University Department of Dermatology

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 18 years and older (Adult, Older Adult)
• Accepts Healthy Volunteers: No
• Genders Eligible for Study: All

• Sampling Method: Non-Probability Sample

Study Population

Women diagnosed with CCCA who have been seen at Northwestern Dermatology between 10/1/15 and 9/30/17.

Description

Inclusion Criteria:

• Evaluated in the Northwestern Dermatology Department between October 1, 2015 and September 30, 2017.
• Evaluated by any faculty physician.
• Diagnosed with CCCA.
• Age 18 or older.
• All subjects must have given signed informed consent prior to participation in study.

Exclusion Criteria:

• Non-English speakers (interpreters not available)

Study Plan

How is the study designed?

Design Details

• Observational Models: Case-Only
• Time Perspectives: Cross-Sectional

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Time Frame
Quantified Barriers to Care Survey Responses	Duration of study-approximately 2 years
Quantified Quality of Life Survey Responses	Duration of study-approximately 2 years

Collaborators and Investigators

• Sponsor: Northwestern University
• Investigators: Principal Investigator: Roopal Kundu, MD, Northwestern Department of Dermatology

Publications and helpful links

General Publications

• Dlova NC, Forder M. Central centrifugal cicatricial alopecia: possible familial aetiology in two African families from South Africa. Int J Dermatol. 2012 Nov;51 Suppl 1:17-20, 20-3. doi: 10.1111/j.1365-4632.2012.05557.x. No abstract available. English, French.
• Gathers RC, Jankowski M, Eide M, Lim HW. Hair grooming practices and central centrifugal cicatricial alopecia. J Am Acad Dermatol. 2009 Apr;60(4):574-8. doi: 10.1016/j.jaad.2008.10.064.
• Gathers RC, Mahan MG. African american women, hair care, and health barriers. J Clin Aesthet Dermatol. 2014 Sep;7(9):26-9.
• Halder RM, Grimes PE, McLaurin CI, Kress MA, Kenney JA Jr. Incidence of common dermatoses in a predominantly black dermatologic practice. Cutis. 1983 Oct;32(4):388, 390.
• Mkentane K, Maneli M, Khumalo NP, Davids LM, Freedom G. Relaxers damage hair and increase fragility. Int J Dermatol. 2014 Mar;53(3):e200-2. doi: 10.1111/ijd.12283. No abstract available.
• Summers P, Kyei A, Bergfeld W. Central centrifugal cicatricial alopecia - an approach to diagnosis and management. Int J Dermatol. 2011 Dec;50(12):1457-64. doi: 10.1111/j.1365-4632.2011.05098.x.
• Kyei A, Bergfeld WF, Piliang M, Summers P. Medical and environmental risk factors for the development of central centrifugal cicatricial alopecia: a population study. Arch Dermatol. 2011 Aug;147(8):909-14. doi: 10.1001/archdermatol.2011.66. Epub 2011 Apr 11.
• LoPresti P, Papa CM, Kligman AM. Hot comb alopecia. Arch Dermatol. 1968 Sep;98(3):234-8. No abstract available.
• Ogunleye TA, McMichael A, Olsen EA. Central centrifugal cicatricial alopecia: what has been achieved, current clues for future research. Dermatol Clin. 2014 Apr;32(2):173-81. doi: 10.1016/j.det.2013.12.005. Epub 2014 Jan 22.
• McMichael AJ. Ethnic hair update: past and present. J Am Acad Dermatol. 2003 Jun;48(6 Suppl):S127-33. doi: 10.1067/mjd.2003.278.
• Sperling LC, Cowper SE. The histopathology of primary cicatricial alopecia. Semin Cutan Med Surg. 2006 Mar;25(1):41-50. doi: 10.1016/j.sder.2006.01.006.
• Sperling LC, Sau P. The follicular degeneration syndrome in black patients. 'Hot comb alopecia' revisited and revised. Arch Dermatol. 1992 Jan;128(1):68-74.
• Sperling LC, Solomon AR, Whiting DA. A new look at scarring alopecia. Arch Dermatol. 2000 Feb;136(2):235-42. doi: 10.1001/archderm.136.2.235. No abstract available.
• Mukherjee N, Morrell DS, Duvic M, Stewart PW, Goldsmith LA. Attitudes of dermatologists in the southeastern United States regarding treatment of alopecia areata: a cross-sectional survey study. BMC Dermatol. 2009 Nov 12;9:11. doi: 10.1186/1471-5945-9-11.

Study record dates

Study Major Dates

• Study Start (Actual): August 1, 2016
• Primary Completion (Actual): September 1, 2017
• Study Completion (Actual): September 1, 2017

Study Registration Dates

• First Submitted: December 16, 2016
• First Submitted That Met QC Criteria: February 3, 2017
• First Posted (Estimate): February 7, 2017

Study Record Updates

• Last Update Posted (Actual): December 13, 2017
• Last Update Submitted That Met QC Criteria: December 12, 2017
• Last Verified: December 1, 2017

More Information

Terms related to this study

• Additional Relevant MeSH Terms: Pathologic Processes; Skin Diseases; Pathological Conditions, Anatomical; Fibrosis; Hypotrichosis; Hair Diseases; Cicatrix; Alopecia; Alopecia Areata
• Other Study ID Numbers: SP070316

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: Undecided