Abstract
Background
Chronic inflammatory skin diseases like atopic dermatitis (AD) and psoriasis can severely impact patients’ quality of life (QOL). However, the effect of these diseases can diminish the QOL of patients’ family members as well. The objective of this study was to understand the impact on QOL for family members of patients diagnosed with AD or psoriasis.
Methods
We conducted focus groups and interviews with 23 individuals; 12 had a family member with AD, and 11 had a family member with psoriasis. After investigators independently coded the transcripts, thematic analysis was conducted.
Results
Three major themes emerged: (1) lifestyle consequences—many daily activities for family members, including but not limited to leisure activities, sleep, and cleaning, were affected by AD or psoriasis; (2) emotional consequences—family members felt frustrated, worried, or embarrassed, among other concerns, because of their loved ones’ AD or psoriasis; (3) relationships—relationships between family members and their loved ones with AD or psoriasis could become strained, and though family members might try to be sympathetic, doing so could be difficult because of their lack of understanding of how these diseases feel and personally affect their loved ones.
Conclusions
This study highlights the impacts of AD and psoriasis on the whole family. Clinicians should be mindful of the effects on QOL not only for patients but also for family members who live with and care about these patients. Especially when family members assist with treatments, it is important to understand family members’ experiences when making treatment decisions.
References
Kaaz K, Szepietowski JC, Matusiak Ł. Influence of itch and pain on sleep quality in atopic dermatitis and psoriasis. Acta Derm Venereol. 2019;99(2):175–80.
Eckert L, Gupta S, Amand C, Gadkari A, Mahajan P, Gelfand JM. Impact of atopic dermatitis on health-related quality of life and productivity in adults in the United States: an analysis using the National Health and Wellness Survey. J Am Acad Dermatol. 2017;77(2):274-9.e3.
Chiesa Fuxench ZC, Block JK, Boguniewicz M, Boyle J, Fonacier L, Gelfand JM, et al. Atopic dermatitis in America study: a cross-sectional study examining the prevalence and disease burden of atopic dermatitis in the US adult population. J Invest Dermatol. 2019;139(3):583–90.
Monti F, Agostini F, Gobbi F, Neri E, Schianchi S, Arcangeli F. Quality of life measures in Italian children with atopic dermatitis and their families. Ital J Pediatr. 2011;37:59.
Tadros A, Vergou T, Stratigos AJ, Tzavara C, Hletsos M, Katsambas A, et al. Psoriasis: is it the tip of the iceberg for the quality of life of patients and their families? J Eur Acad Dermatol Venereol. 2011;25(11):1282–7.
Tollefson MM, Finnie DM, Schoch JJ, Eton DT. Impact of childhood psoriasis on parents of affected children. J Am Acad Dermatol. 2017;76(2):286-9.e5.
Eghlileb AM, Davies EEG, Finlay AY. Psoriasis has a major secondary impact on the lives of family members and partners. Br J Dermatol. 2007;156(6):1245–50.
Carroll CL, Balkrishnan R, Feldman SR, Fleischer AB Jr, Manuel JC. The burden of atopic dermatitis: impact on the patient, family, and society. Pediatr Dermatol. 2005;22(3):192–9.
Martínez-García E, Arias-Santiago S, Valenzuela-Salas I, Garrido-Colmenero C, García-Mellado V, Buendía-Eisman A. Quality of life in persons living with psoriasis patients. J Am Acad Dermatol. 2014;71(2):302–7.
Taliercio VL, Snyder AM, Webber LB, Langner AU, Rich BE, Beshay AP, et al. The disruptiveness of itchiness from psoriasis: a qualitative study of the impact of a single symptom on quality of life. J Clin Aesthet Dermatol. 2021;14(6):42–8.
Snyder AM, Taliercio VL, Brandenberger AU, Rich BE, Webber LB, Beshay AP, et al. Effects of pain from atopic dermatitis: interview and focus group study with patients and their families. JMIR Dermatol. 2021;4(2): e29826.
Rogers CR. Client-centered therapy: its current practice, implications and theory. Boston: Houghton Mifflin; 1951.
Scholl I, Zill JM, Härter M, Dirmaier J. An integrative model of patient-centeredness - a systematic review and concept analysis. PLoS ONE. 2014;9(9):e107828.
Angelhoff C, Askenteg H, Wikner U, Edéll-Gustafsson U. “To cope with everyday life, I need to sleep” - a phenomenographic study exploring sleep loss in parents of children with atopic dermatitis. J Pediatr Nurs. 2018;43:e59–65.
Chamlin SL, Mattson CL, Frieden IJ, Williams ML, Mancini AJ, Cella D, et al. The price of pruritus: sleep disturbance and cosleeping in atopic dermatitis. Arch Pediatr Adolesc Med. 2005;159(8):745–50.
Salman A, Yucelten AD, Sarac E, Saricam MH, Perdahli-Fis N. Impact of psoriasis in the quality of life of children, adolescents and their families: a cross-sectional study. An Bras Dermatol. 2018;93(6):819–23.
Campos ALB, Araújo FMD, Santos MALD, Santos ADASD, Pires CAA. Impact of atopic dermatitis on the quality of life of pediatric patients and their guardians. Rev Paul Pediatr. 2017;35(1):5–10.
Lewis-Jones S. Quality of life and childhood atopic dermatitis: the misery of living with childhood eczema. Int J Clin Pract. 2006;60(8):984–92.
Holm EA, Esmann S, Jemec GBE. Does visible atopic dermatitis affect quality of life more in women than in men? Gend Med. 2004;1(2):125–30.
Basra MKA, Sue-Ho R, Finlay AY. The family dermatology life quality index: measuring the secondary impact of skin disease. Br J Dermatol. 2007;156(3):528–38.
Basra MK, Edmunds O, Salek MS, Finlay AY. Measurement of family impact of skin disease: further validation of the Family Dermatology Life Quality Index (FDLQI). J Eur Acad Dermatol Venereol. 2008;22(7):813–21.
Sampogna F, Finlay AY, Salek SS, Chernyshov P, Dalgard FJ, Evers AWM, et al. Measuring the impact of dermatological conditions on family and caregivers: a review of dermatology-specific instruments. J Eur Acad Dermatol Venereol. 2017;31(9):1429–39.
Funding
Funding was provided by a Discovery Grant from the National Eczema Association awarded to Dr. Secrest and a Discovery Grant from the National Psoriasis Foundation awarded to Dr. Secrest. Dr. Secrest is also supported by a Public Health Career Development Award from the Dermatology Foundation. Funding sources had no involvement in developing this study.
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This study was approved by the University of Utah Institutional Review Board (#102556 and #98441).
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Informed consent was obtained from all individual participants included in the study.
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Snyder, A.M., Brandenberger, A.U., Taliercio, V.L. et al. Quality of Life Among Family of Patients with Atopic Dermatitis and Psoriasis. Int.J. Behav. Med. 30, 409–415 (2023). https://doi.org/10.1007/s12529-022-10104-7
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DOI: https://doi.org/10.1007/s12529-022-10104-7