The Diagnosis of Hereditary Angioedema: Family Caregivers’ Experiences

Granero‐Molina, José; Sánchez-Hernández, Francisco; Fernández‐Sola, Cayetano; Jiménez-Lasserrotte, María del Mar; Antequera-Raynal, Laura Helena; Hernández‐Padilla, José Manuel

doi:10.1177/1054773818780102

Cited by 13 publications

(31 citation statements)

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“…2 Department of Translational Medical Sciences and Center for Basic and Clinical Immunology Research (CISI), University of Naples Federico II, Naples, Italy. 3 Department of Medicine, University of Padua, Padua, Italy. 4 ASST Fatebenefratelli Sacco, Department of Biomedical and Clinical Sciences, "Luigi Sacco" Hospital, University of Milan, Milan, Italy.…”

Section: Fundingmentioning

confidence: 99%

“…Frequency, severity and site of attacks are extremely variable among patients and also during the patient’s life, and identification of triggering events is usually difficult. Patients may experience difficulties in carrying out daily living activities because of frequent attacks or due to anxiety for an unpreventable event [ 3 ].…”

Section: Introductionmentioning

confidence: 99%

“…Patients may experience difficulties in carrying out daily living activities because of frequent attacks or due to anxiety for an unpreventable event [3].…”

Section: Introductionmentioning

confidence: 99%

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

Savarese

Bova

Maiello

et al. 2021

Orphanet J Rare Dis

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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.

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Section: Fundingmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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

Savarese

Bova

Maiello

et al. 2021

Orphanet J Rare Dis

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“…Family caregivers are unsung heroes in persons with cardiovascular conditions. This was found to be true in the study by Granero-Molina and colleagues (2020). This research team investigated the family caregiving experiences of persons with hereditary angioedema.…”

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confidence: 66%

“…This qualitative study identified the impact of this diagnosis. First, trying to obtain a diagnosis then having to cope with the diagnosis and support their loved one (Granero-Molina et al, 2020). There is a significant role for nursing in supporting the person with hereditary angioedema and their family caregivers through education, nursing interventions and advocacy for research in rare diseases.…”

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confidence: 99%

Special Issue: Cardiovascular Nursing Research

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2020

Clin Nurs Res

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Clinical Nursing Research an International Journal received several excellent manuscripts addressing cardiovascular nursing research allowing us to create a special themed February issue. The manuscripts in this issue focus on cardiovascular disease: prevention, interventions, impact on mental health, self-care, and caregiver experiences. These studies demonstrate the richness of nursing research encompassing systematic reviews of the literature, quantitative, qualitative, and mixed methods addressing important areas for nursing interventions. Clinical Nursing Research publishes nursing research with nursing practice implications. Highlighting the importance of addressing culture within nursing research, the systematic review of the literature by (Shin et al., 2020) found that interventions were successful in improving cardiovascular health outcomes for Korean Americans. Yet, the role of the participants Korean culture was not consistently addressed in the analysis of the cardiovascular outcomes. Additionally, long-term cardiovascular outcomes were not addressed in the studies reviewed. Shin and colleagues (2020) suggest that by integrating and deploying cultural informed interventions would improve nursing's ability to decrease cardiovascular health disparities for Korean Americans (Shin et al., 2020). Gaining a better understanding of the heart failure related symptoms associated with greater depressive symptoms can improve nursing assessment and interventions for persons with heart failure and associated mental health concerns such as depressive symptoms. Graven and colleagues (2020) completed a cross-sectional secondary analysis of Heart Failure Symptom Survey data and identified that fatigue, dizziness, forgetfulness, and difficulty concentrating were associated with depressive symptoms in persons with heart failure. These make sense, anhedonia can resemble fatigue, inattention due to depression can manifest as forgetfulness and difficulty concentrating. Dizziness can be incapacitating exacerbating depressive symptoms. The authors recommend further research into symptom profiling to enhance nursing's ability to identify and intervene to address depressive symptoms in persons with heart failure (Graven et al., 2020). Self-care is essential in most chronic diseases. Tawalbeh and colleagues (2020) investigated self-care behaviors of Jordanians with heart failure. In their cross-sectional study of 226 Jordanians with heart failure, they found lower than 901611C NRXXX10.

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Time Trade-Off Utilities for Hereditary Angioedema Health and Caregiver States

Lloyd

Elkhalifa

et al. 2021

PharmacoEconomics Open

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Background Hereditary angioedema (HAE) is an inherited chronic rare disease characterised by recurrent swelling attacks that are associated with significant physical and psychological burden. There is limited understanding of the effect of attack location on this burden and of caregiver burden. Objective Our objective was to capture the relative burden of HAE health and caregiver states, including different attack locations, through a time trade-off (TTO) analysis involving participants from the general public. Methods Qualitative interviews were undertaken to inform vignette development for the TTO study, including vignettes for abdominal, facial, hand and laryngeal attack health states, and an attack-free and caregiver state. Members of the general public in England rated vignettes in TTO interviews, which included a visual analogue scale (VAS) component. For the development of the health state vignettes, qualitative interviews with 15 patients, 5 caregivers and 1 clinical expert were performed. TTO analysis was based on vignette valuation completed by 100 members of the general public. Results The TTO values were as follows: attack-free, 0.783 (standard deviation [SD] 0.316); hand: 0.582 (SD 0.380); facial: 0.483 (SD 0.448); abdominal: 0.345 (SD 0.458); and laryngeal: 0.128 (SD 0.529). The caregiver rating was 0.762 (SD 0.303). V′ scores were similar and consistent with TTO values. Conclusion TTO utility values demonstrate that HAE places a significant burden on patients, which is influenced by attack location, and on caregivers. These utility weights can provide important information on quality of life for future economic evaluations of treatments.

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The Diagnosis of Hereditary Angioedema: Family Caregivers’ Experiences

Cited by 13 publications

References 46 publications

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

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

Special Issue: Cardiovascular Nursing Research

Time Trade-Off Utilities for Hereditary Angioedema Health and Caregiver States

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