Depression and cardiac symptoms among AL amyloidosis patients: the mediating role of coping strategies

Smorti, Martina; Cappelli, Francesco; Guarnieri, Silvia; Bergesio, Franco; Perfetto, Federico

doi:10.1080/13548506.2013.802357

Cited by 11 publications

(11 citation statements)

References 28 publications

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“…This re ects existing grey literature such as a survey of UK-and US-based respondents which reported high levels of 'worry,' 'anxiety and stress' and 'depression' amongst rare disease patients and carers [1] and a Europe-wide survey that found 38% of respondents felt they needed psychological support [28]. It is also consistent with ndings from condition-speci c studies which used diagnostic tools to measure anxiety and/or depression in rare disease patients and/or carers [18,19,20] and impact on quality of life [15,16,17].…”

Section: Discussionsupporting

confidence: 58%

“…These studies have generally indicated considerable impairment on quality of life for rare disease patients, including individuals with oculopharyngeal muscular dystrophy [15], and epidermolysis bullosa [16]; and also parents and carers of individuals with epidermolysis bullosa [16] and CDKL5 disorder [17]. A number of groups have also applied validated tools to screen for depression and/or anxiety amongst rare disease patients, including individuals with myocarditis [18], AL amyloidosis [19] and mitochondrial disorders [20], and have typically reported signi cant mental health impairments. Additionally, a recent German cross-sectional study reported increased levels of depression and anxiety in a mixed rare disease cohort [21].…”

Section: Introductionmentioning

confidence: 99%

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Rare diseases and mental health in the UK - a quantitative survey and multi-stakeholder workshop

Spencer-Tansley

Meade

Ali

et al. 2020

Preprint

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Background Rare disease patients and carers report significant impacts on mental health but this has not been extensively studied. We explored the experiences of UK-based individuals through an online survey, and offer recommendations for policy and practice developed with a multi-stakeholder workshop. Results In total 1,355 patients and 571 carers responded to the survey.Due to their rare condition, the majority of respondents had felt worried/anxious (95%); stressed (93%); low/depressed (90%); emotionally exhausted (88%). Thirty-six percent of patients and 19% of carers had had suicidal thoughts.Challenges that are particular to rare conditions and which negatively affect mental health included limited knowledge of the condition amongst healthcare professionals (88%), not being believed or taken seriously by healthcare professionals (80%), and lack of available information about the condition (76%). Only 23% of respondents felt healthcare professionals considered mental health as equally important as physical health. Almost half of patients (46%) and carers (48%) reported never having been asked about their mental health, or that of the person they care for, by healthcare professionals.Forty-six percent of respondents had received professional psychological support; the most common reason for not having accessed professional psychological support was that it had not been suggested (41%).Fifty-nine percent of respondents had accessed sources of additional emotional support, such as patient groups, with the majority (75%) having found this support themselves. With input from our multi-stakeholder workshop we developed recommendations for healthcare professionals to be supported to effectively and sensitively recognise and address patients’ and carers’ mental health needs; and for service level coordination of care to integrate professional psychological support with rare disease services.Conclusions Living with a rare disease substantially impacts mental health. Many of the drivers of poor mental health reflect issues specific to managing rare conditions. To meet existing UK government commitments, there should be a focus on empowering healthcare professionals who treat rare disease patients and on integration of mental health support with rare disease services.

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Section: Discussionsupporting

confidence: 58%

Section: Introductionmentioning

confidence: 99%

Rare diseases and mental health in the UK - a quantitative survey and multi-stakeholder workshop

Spencer-Tansley

Meade

Ali

et al. 2020

Preprint

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“…In accordance with this hypothesis, it has already been demonstrated that ATTRm and ATTRwt amyloidosis have better prognoses, despite patients' older age at diagnosis and echocardiographic evidence of thicker ventricles, with an overall survival at 2 years of 63% for AL, 98% for ATTRm, and 100% for ATTRwt …”

Section: Discussionmentioning

confidence: 61%

“…The ATTR form can be further classified in hereditary transthyretin‐related amyloidosis (ATTRm), due to mutations in the gene codifying for transthyretin, and systemic senile amyloidosis, a noninherited form caused by the deposition of the wild‐type transthyretin (TTR) protein (ATTRwt) in the extracellular space . Cardiac involvement is frequent in both AL and ATTR amyloidosis, and is associated with important clinical and psychological consequences that have a significant impact on prognosis…”

Section: Introductionmentioning

confidence: 99%

Echocardiographic and Biohumoral Characteristics in Patients With AL and TTR Amyloidosis at Diagnosis

Cappelli

Baldasseroni

Bergesio

et al. 2015

Clinical Cardiology

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Background: Few studies have analyzed the clinical and echocardiographic differences between light-chain (AL) and transthyretin (TTR) amyloidosis. Hypothesis: The aim of the present research was to compare, in a real-world setting, the clinical and echocardiographic profiles of these kinds of amyloidosis, at the time of diagnosis, using new-generation echocardiography. Methods: Seventy-nine patients with AL and 48 patients with TTR amyloidosis were studied. Results: According to the criterion of mean left ventricular (LV) thickness >12 mm, 45 AL (C-AL) and all TTR patients had cardiac amyloidotic involvement, whereas 34 AL patients did not. TTR patients had increased right ventricular (RV) and LV chambers with increased RV and LV wall thickness and reduced LV ejection fraction and fractional shortening. Furthermore, TTR patients showed lower N-terminal pro Brain Natriuretic Peptide concentrations and New York Heart Association functional class when compared with C-AL. Conclusions: Our data show that at time of first diagnosis, TTR patients have a more advanced amyloidotic involvement of the heart, despite less severe symptoms and biohumoral signs of heart failure. We can hypothesize that we observed different diseases at different stages. In fact, AL amyloidosis is a multiorgan disease with quick progression rate, that becomes rapidly symptomatic, whereas TTR amyloidosis might have a slow progression rate and might remain poorly symptomatic for a greater amount of time.

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“…Symptom-related coping may mediate the relationship between daily physical symptoms and mood changes, based on the transactional stress-coping theory (Lazarus & Folkman, 1984). Some studies have already investigated this issue (Barakat et al, 2007;Smorti et al, 2014), however, not in the context of everyday life or specific variability of individuals. Although Gruszczyńska and Knoll (2015) investigated lower-level mediating effect of meaning-focused coping in association with pain and PA, dynamic compounds between these variables were not tested (only the same-day associations were analyzed).…”

Section: Introductionmentioning

confidence: 99%

Fluctuation in physical symptoms, coping, and mood in patients following hematopoietic stem cell transplantation: assessing mediation effects using a daily diary approach

2018

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This study examines the indirect effect between parallel fluctuation in daily physical symptoms, symptom-related coping, and mood in patients following hematopoietic stem cell transplantation. Two models were analyzed with a within-person mediating role of coping and mood, respectively. Physical symptoms, coping (brooding, reflection, co-rumination, positive reframing, venting, acceptance, and active coping), and positive (PA) and negative affect (NA) were reported by 229 patients for 28 consecutive evenings after post-transplant hospital discharge. The mediating role of coping fluctuation was partially supported since a competitive model assuming coping reactivity was more reliable. Fluctuation in daily PA and NA mediated relationship of physical symptoms with brooding, co-rumination and venting. Daily changes in positive reframing, acceptance and reflection, partially mediated the association between changes in physical symptoms and mood. The study results indicate the usefulness of intervention addressed to the management of daily mood and stimulation of positive reframing and acceptance in post-HSCT patients.

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Depression and cardiac symptoms among AL amyloidosis patients: the mediating role of coping strategies

Cited by 11 publications

References 28 publications

Rare diseases and mental health in the UK - a quantitative survey and multi-stakeholder workshop

Rare diseases and mental health in the UK - a quantitative survey and multi-stakeholder workshop

Echocardiographic and Biohumoral Characteristics in Patients With AL and TTR Amyloidosis at Diagnosis

Fluctuation in physical symptoms, coping, and mood in patients following hematopoietic stem cell transplantation: assessing mediation effects using a daily diary approach

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