Literature DB >> 33422102

Psychological processes in the experience of hereditary angioedema in adult patients: an observational study.

Livia Savarese1, Maria Bova2, Assunta Maiello3, Angelica Petraroli2, Ilaria Mormile2, Mauro Cancian4, Riccardo Senter4, Andrea Zanichelli5, Giuseppe Spadaro2, Maria Francesca Freda3.   

Abstract

BACKGROUND: Hereditary angioedema associated to C1 inhibitor deficiency (C1-INH-HAE) is a pathological condition characterized by episodes of subcutaneous swelling and it is frequently associated with discomfort and social impairment of the patients, due to the anxiety experienced for an unpreventable manifestation of an attack during daily life. In children increased level of stress and alexithymia have been associated to C1-INH-HAE, and the latter correlated also with the severity of the disease. We hypothesized that the involvement of psychological issues may impact on the severity of C1-INH-HAE in adult patients as well, interfering with their ability to engage with the management of the disease.
METHODS: 28 adult patients with C1-INH-HAE were evaluated for clinical (C1-INH-HAE Severity Score) and psychological factors (alexithymia, emotion regulation, stress, patient health engagement, general severity index) by means of validated questionnaires.
RESULTS: Mean age (standard deviation [SD]) was 45 (11) years and time from diagnosis was 20 (12) years. The mean C1-INH-HAE severity score was 6.4. Alexithymia was absent in 22 (78%) patients. Moderate and high stress levels were present in 17 (61%) and 4 (14%) patients, respectively. Moderate-high discomfort was experienced by 9 (36%) patients and a discomfort beyond the clinical attention threshold was shown by 3 (12%) patients. Stress correlated with patient health engagement and with psychological discomfort.
CONCLUSIONS: In C1-INH-HAE, patients health engagement and moderate-high psychological discomfort are linked with stress but not with the severity of the disease or alexithymia. A better patient health engagement may be a target for psychological intervention in clinics to ameliorate the stress perceived by C1-INH-HAE patients.

Entities:  

Keywords:  C1 inhibitor; C1 inhibitor deficiency; Hereditary angioedema; Psychological processes; Stress

Mesh:

Substances:

Year:  2021        PMID: 33422102      PMCID: PMC7796642          DOI: 10.1186/s13023-020-01643-x

Source DB:  PubMed          Journal:  Orphanet J Rare Dis        ISSN: 1750-1172            Impact factor:   4.123


  14 in total

1.  A global measure of perceived stress.

Authors:  S Cohen; T Kamarck; R Mermelstein
Journal:  J Health Soc Behav       Date:  1983-12

2.  Mutational spectrum and phenotypes in Danish families with hereditary angioedema because of C1 inhibitor deficiency.

Authors:  A Bygum; C R Fagerberg; D Ponard; N Monnier; J Lunardi; C Drouet
Journal:  Allergy       Date:  2010-08-30       Impact factor: 13.146

Review 3.  Angioedema Due to Bradykinin Dysregulation.

Authors:  Marco Cicardi; Bruce L Zuraw
Journal:  J Allergy Clin Immunol Pract       Date:  2018 Jul - Aug

Review 4.  Hereditary and Acquired Angioedema: Heterogeneity of Pathogenesis and Clinical Phenotypes.

Authors:  Maria Bova; Giulia De Feo; Roberta Parente; Tiziana De Pasquale; Carmela Gravante; Stefano Pucci; Eustachio Nettis; Massimo Triggiani
Journal:  Int Arch Allergy Immunol       Date:  2018-01-26       Impact factor: 2.749

5.  Depression and anxiety in patients with hereditary angioedema.

Authors:  Andrew S Fouche; Erika F H Saunders; Timothy Craig
Journal:  Ann Allergy Asthma Immunol       Date:  2013-06-25       Impact factor: 6.347

6.  The Diagnosis of Hereditary Angioedema: Family Caregivers' Experiences.

Authors:  José Granero-Molina; Francisco Sánchez-Hernández; Cayetano Fernández-Sola; María Del Mar Jiménez-Lasserrotte; Laura Helena Antequera-Raynal; José Manuel Hernández-Padilla
Journal:  Clin Nurs Res       Date:  2018-06-04       Impact factor: 2.075

7.  The hereditary angioedema burden of illness study in Europe (HAE-BOIS-Europe): background and methodology.

Authors:  Anette Bygum; Emel Aygören-Pürsün; Teresa Caballero; Kathleen Beusterien; Shadi Gholizadeh; Patience Musingarimi; Suzanne Wait; Henrik Boysen
Journal:  BMC Dermatol       Date:  2012-04-26

8.  Glucocorticoid receptor gene polymorphisms in hereditary angioedema with C1-inhibitor deficiency.

Authors:  Zsuzsanna Zotter; Zsolt Nagy; Attila Patócs; Dorottya Csuka; Nóra Veszeli; Kinga Viktória Kőhalmi; Henriette Farkas
Journal:  Orphanet J Rare Dis       Date:  2017-01-10       Impact factor: 4.123

9.  Caregivers' Sensemaking of Children's Hereditary Angioedema: A Semiotic Narrative Analysis of the Sense of Grip on the Disease.

Authors:  Maria Francesca Freda; Livia Savarese; Pasquale Dolce; Raffaele De Luca Picione
Journal:  Front Psychol       Date:  2019-11-27

10.  Emotional processes and stress in children affected by hereditary angioedema with C1-inhibitor deficiency: a multicenter, prospective study.

Authors:  Livia Savarese; Maria Bova; Raffaella De Falco; Maria Domenica Guarino; Raffaele De Luca Picione; Angelica Petraroli; Riccardo Senter; Claudia Traverso; Matteo Zabotto; Andrea Zanichelli; Eugenio Zito; Maria Alessio; Mauro Cancian; Marco Cicardi; Adriana Franzese; Roberto Perricone; Gianni Marone; Paolo Valerio; Maria Francesca Freda
Journal:  Orphanet J Rare Dis       Date:  2018-07-13       Impact factor: 4.123

View more
  1 in total

1.  Pregnancy in women with Hereditary Angioedema due to C1-inhibitor deficiency: Results from the ITACA cohort study on outcome of mothers and children with in utero exposure to plasma-derived C1-inhibitor.

Authors:  P Triggianese; R Senter; A Petraroli; A Zoli; M Lo Pizzo; D Bignardi; E Di Agosta; S Agolini; F Arcoleo; O Rossi; S Modica; E Greco; M S Chimenti; G Spadaro; C De Carolis; M Cancian
Journal:  Front Med (Lausanne)       Date:  2022-09-14
  1 in total

北京卡尤迪生物科技股份有限公司 © 2022-2023.