scholarly journals Anxiety and depression in Dutch patients with Primary Ciliary Dyskinesia and their caregivers: associations with health-related quality of life

2021 ◽  
pp. 00274-2021
Author(s):  
Marieke Verkleij ◽  
Iris Appelman ◽  
Josje Altenburg ◽  
Jos Twisk ◽  
Alexandra L. Quittner ◽  
...  
Keyword(s):  
Primary Ciliary Dyskinesia ◽  
Screening Program ◽  
Anxiety And Depression ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Health Screening Program ◽  
Anxiety Depression ◽  
Ciliary Dyskinesia

BackgroundPrimary Ciliary Dyskinesia (PCD) might be a risk factor for the development of anxiety and depression. This study investigated the associations between anxiety, depression and health-related quality of life (HRQoL) in individuals with PCD and their caregivers.MethodsChildren, adolescents and adults with PCD and their caregivers were invited to participate in a mental health screening program. During regular yearly outpatient visits, measures of anxiety (GAD-7), depression (PHQ-9), HRQoL (QOL-PCD), lung function (FEV1) and Body Mass Index (BMI)) were collected and associations of anxiety, depression and HRQL were estimated.Results103 individuals participated in the mental health screening program. Elevated levels of anxiety (scores≥10 on GAD-7) were found in 6% of adults (n=33), 14% of children (n=7), 6% of adolescents (n=17) and 20% of caregivers (n=46, 52% mothers). Elevated depression levels (scores≥10 on PHQ-9) were found in 18% of adults, 14% of children, 6% of adolescents and 11% of caregivers. Anxiety and depression were associated with scales on the QOL-PCD. Mothers reported higher anxiety scores than fathers (30% versus 9%, p=0.03). A strong negative relationship was found between depression in caregivers and Physical Functioning (QOL-PCD) of the child. Anxiety and depression were not significantly associated with anxiety/depression in their child.ConclusionThis is the first study investigating anxiety and depression in individuals with PCD and their caregivers. Our results revealed elevated levels of anxiety and depression, which were associated with worse HRQoL. These results suggest the need for psychological support in PCD.

scholarly journals Validation of pediatric health‐related quality of life instruments for primary ciliary dyskinesia (QOL‐PCD)

2019 ◽  
Vol 54 (12) ◽  
pp. 2011-2020 ◽  
Author(s):  
Laura Behan ◽  
Margaret W. Leigh ◽  
Sharon D. Dell ◽  
Alexandra L. Quittner ◽  
Claire Hogg ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Primary Ciliary Dyskinesia ◽  
Health Related Quality ◽  
Pediatric Health ◽  
Related Quality ◽  
Health Related ◽  
Quality Of Life Instruments ◽  
Ciliary Dyskinesia

scholarly journals The patient’s experience of primary ciliary dyskinesia: a systematic review

2017 ◽  
Vol 26 (9) ◽  
pp. 2265-2285 ◽  
Author(s):  
Laura Behan ◽  
Bruna Rubbo ◽  
Jane S. Lucas ◽  
Audrey Dunn Galvin
Keyword(s):  
Quality Of Life ◽  
Primary Ciliary Dyskinesia ◽  
Age Groups ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Uk ◽  
The Impact ◽  
Ciliary Dyskinesia

Abstract Background Primary ciliary dyskinesia (PCD) is a rare genetic disorder characterised by progressive sinopulmonary disease, with symptoms starting soon after birth. The aim of this study is to critically review, analyse, and synthesise the literature in order to understand the experiences of patients with primary ciliary dyskinesia (PCD) and the impact on health-related quality of life. Method MEDLINE, EBSCO, Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO and EMBASE were searched according to the inclusion criteria. A qualitative analysis of 14 studies was conducted. Results Fourteen studies were included in the review, five with qualitative methodologies. Studies originated from the UK, USA, Italy, Denmark and Belgium, one study included a survey distributed internationally. Significant relationships were found between age and worsening of respiratory symptoms, physical, and mental domains of health-related quality of life, with a greater decline compared with reference populations. Variations between the UK and Italy were found for health-related quality of life and its correlation with time since diagnosis. PCD was found to have a physical impact in all age groups: patients found it difficult to keep up with others, and found energy levels were easily depleted compared to family or peers. In terms of social impact, symptoms lead to embarrassment and a sense of isolation, with patients concealing symptoms and/or their diagnosis. In turn, isolation was also linked with the lack of public and medical knowledge. In relation to emotional impact, anxiety was reported in a number of qualitative studies; patients were anxious about getting sick or when thinking about their future health. The burden of treatment and factors influencing adherence were also discussed in depth. Conclusion Health-related quality of life decreases with age in patients with PCD. For all age groups, PCD was found to greatly impact physical, emotional, social functioning, and treatment burden. More research is needed on the psychosocial impact of the illness, disease burden and its effect on quality of life.

scholarly journals Health-related quality of life and unmet needs in patients with primary ciliary dyskinesia

2009 ◽  
Vol 35 (4) ◽  
pp. 787-794 ◽  
Author(s):  
M. Pifferi ◽  
A. Bush ◽  
M. Di Cicco ◽  
U. Pradal ◽  
V. Ragazzo ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Primary Ciliary Dyskinesia ◽  
Unmet Needs ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Ciliary Dyskinesia

scholarly journals Validation of a health-related quality of life instrument for primary ciliary dyskinesia (QOL-PCD)

Thorax ◽  
2017 ◽  
Vol 72 (9) ◽  
pp. 832-839 ◽  
Author(s):  
Laura Behan ◽  
Margaret W Leigh ◽  
Sharon D Dell ◽  
Audrey Dunn Galvin ◽  
Alexandra L Quittner ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Primary Ciliary Dyskinesia ◽  
Health Related Quality ◽  
Life Instrument ◽  
Related Quality ◽  
Health Related ◽  
Ciliary Dyskinesia

scholarly journals Anxiety, depression and impaired health-related quality of life are therapeutic challenges in patients with multiple sclerosis

2010 ◽  
Vol 2 (1) ◽  
pp. 20-24 ◽  
Author(s):  
Dominik Michalski ◽  
Stefanie Liebig ◽  
Eva Thomae ◽  
Susanne Singer ◽  
Andreas Hinz ◽  
...  
Keyword(s):  
Physical Functioning ◽  
Anxiety And Depression ◽  
Health Related Quality ◽  
Therapeutic Approaches ◽  
Sf 36 ◽  
Related Quality ◽  
Health Related ◽  
Impaired Health ◽  
Anxiety Depression

Anxiety, depression and impaired health-related quality of life (HRQoL) are commonly reported in patients with multiple sclerosis (MS) and are of great interest for therapeutic approaches. Based on regional differences a quantitative assessment of these factors in comparison to the general population, and the consideration of demographic cofactors, would be useful when designing specific interventions. We adopted such an approach in a German cohort of MS patients. Anxiety, depression (HADS) and HRQoL (SF-36) were measured in 49 consecutive outpatients with MS and compared to age- and gender-adjusted control groups (n=1330 for HADS; n=5087 for SF-36) extracted from German National Health Surveys. Patients with MS showed significantly increased levels of anxiety and depression as well as decreased HRQoL with the exception of mental health; the effect sizes ranged from 0.39 (depression) to 1.06 (physical functioning). As could be expected, MS patients with relapsing-remitting clinical course had better physical functioning than patients with secondary progressive MS. There were strong relations between anxiety and depression (r=0.54; P<0.01), and between neurological impairment (EDSS) and physical functioning (r=-0.80; P<0.001) as well as depression (r=0.48; P<0.05). This investigation of MS patients confirms the prevalence and impact of anxiety, depression and most of the HRQoL dimensions in MS patients and provides evidence for the usefulness of a quantitative comparison to a region-specific general population as a starting point for therapeutic approaches.

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