Caregiver Burden Due to Pulmonary Exacerbations in Patients with Cystic Fibrosis

Suthoff, Ellison; Mainz, J.G.; Cox, D.; Thorat, Teja; Grossoehme, Daniel H.; Fridman, Moshe; Sawicki, Gregory S.; Rosenfeld, Margaret

doi:10.1016/j.jpeds.2019.08.038

Cited by 17 publications

(38 citation statements)

References 26 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…The included studies stemmed from 10 different countries: Australia [ 29 ], Brazil [ 30 ], Canada [ 31 ], Germany [ 32 , 33 , 34 , 35 ], Iran [ 36 , 37 , 38 ], Ireland [ 39 ], the Netherlands [ 40 , 41 , 42 , 43 , 44 , 45 ], Poland [ 46 ], Sweden [ 47 ], and the U.S. [ 48 , 49 , 50 , 51 , 52 , 53 , 54 , 55 , 56 , 57 , 58 , 59 ]. Of the 31 studies, 28 used a cross-sectional design [ 29 , 30 , 31 , 32 , 33 , 34 , 35 , 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 , 44 , 46 , 47 , 48 , 50 , 51 , 52 , …”

Section: Resultsmentioning

confidence: 99%

“…Of the 31 studies, 28 used a cross-sectional design [ 29 , 30 , 31 , 32 , 33 , 34 , 35 , 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 , 44 , 46 , 47 , 48 , 50 , 51 , 52 , 53 , 54 , 55 , 56 , 58 , 59 ], whereas three were cohort studies [ 45 , 49 , 55 ]. Table 2 lists the children’s rare diseases by clinical category, which included chromosomal disorders [ 40 , 53 , 54 , 58 ], congenital diseases [ 34 , 44 , 45 ], hematologic and oncologic diseases [ 33 , 37 , 43 , 47 , 56 , 58 ], inflammatory diseases [ 39 , 41 , 48 , 49 , 59 ], metabolic disorders [ 32 , 36 ,…”

Section: Resultsmentioning

confidence: 99%

“…Table 2 lists the children’s rare diseases by clinical category, which included chromosomal disorders [ 40 , 53 , 54 , 58 ], congenital diseases [ 34 , 44 , 45 ], hematologic and oncologic diseases [ 33 , 37 , 43 , 47 , 56 , 58 ], inflammatory diseases [ 39 , 41 , 48 , 49 , 59 ], metabolic disorders [ 32 , 36 , 38 , 42 , 50 , 51 , 57 ], musculoskeletal diseases [ 30 , 35 , 46 , 52 ], and neuromuscular and neurologic disorders [ 29 , 31 , 40 , 55 ]. Four studies examined only mothers [ 37 , 43 , 54 , 55 ], 27 studies examined both mothers and fathers [ 29 , 30 , 31 , 32 , 33 , 34 , 35 , 36 , 38 , 39 , 40 , 41 , 42 , ...…”

Section: Resultsmentioning

confidence: 99%

“…The most frequently used instrument was the PedsQL™ Family Impact Module, used in seven studies [ 31 , 50 , 52 , 53 , 54 , 55 , 56 ]. A wide range of studies also used the Short Form Inventory in the different versions SF-8 [ 34 , 35 ], SF-12 [ 29 , 49 , 56 ], and SF-36 [ 36 , 47 , 55 ]. Three different disease-specific QoL instruments, the CQOLC for cancer [ 37 ], the CQOLCF for cystic fibrosis [ 48 , 49 , 59 ], and the TYR-QOL for tyrosinemia [ 59 ], were used.…”

Section: Resultsmentioning

confidence: 99%

“…A wide range of studies also used the Short Form Inventory in the different versions SF-8 [ 34 , 35 ], SF-12 [ 29 , 49 , 56 ], and SF-36 [ 36 , 47 , 55 ]. Three different disease-specific QoL instruments, the CQOLC for cancer [ 37 ], the CQOLCF for cystic fibrosis [ 48 , 49 , 59 ], and the TYR-QOL for tyrosinemia [ 59 ], were used. A considerable proportion of 11 studies specifically used Health-Related Quality of Life (HRQoL) rather than QoL instruments [ 31 , 40 , 41 , 42 , 43 , 50 , 52 , 53 , 54 , 55 , 56 ].…”

Section: Resultsmentioning

confidence: 99%

See 4 more Smart Citations

Being the Pillar for Children with Rare Diseases—A Systematic Review on Parental Quality of Life

Boettcher

Wiegand-Grefe

et al. 2021

IJERPH

View full text Add to dashboard Cite

Parents caring for children with rare diseases fear the long-term progression of the child’s disease. The current study aims to systematically investigate the quality of life (QoL) in parents of children with different rare diseases. We performed a systematic literature search including quantitative studies on QoL of parents caring for children and adolescents with rare diseases in five databases (APA PsycArticles, APA PsycInfo, MEDLINE, PSYNDEXplus, and PubMed) published between 2000–2020. Of the 3985 titles identified, 31 studies met the inclusion criteria and were selected for narrative review. Studies were included if they investigated predictors of parental QoL or reported QoL compared to normative samples, parents of healthy children, or children with other chronic diseases. We used the Newcastle–Ottawa Scale to assess methodological quality. The systematic review revealed that parents of children with rare diseases experience reduced QoL compared to parents with healthy children and norm values. Psychosocial factors, beyond disease-specific predictors, were shown to influence parental QoL substantially and may thus present an essential aspect within interventions for this highly burdened group. Health care professionals should consider and address the impairment of parental QoL due to the child’s rare disease. We discuss insights into existing research gaps and improvements for subsequent work.

show abstract

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

See 3 more Smart Citations

Being the Pillar for Children with Rare Diseases—A Systematic Review on Parental Quality of Life

Boettcher

Wiegand-Grefe

et al. 2021

IJERPH

View full text Add to dashboard Cite

show abstract

Treatment response to pulmonary exacerbation in primary ciliary dyskinesia

Gatt

Shaw

Waters

et al. 2023

Pediatric Pulmonology

View full text Add to dashboard Cite

IntroductionPulmonary exacerbation (Pex) are common in pediatric primary ciliary dyskinesia (PCD), however changes in forced expiratory volume in 1 s precent predicted (FEV1pp) during Pex are not well described.AimTo assess the evolution of FEV1pp during Pex and to define factors associated with failure to return to baseline lung function.MethodThis was a retrospective study of patients with PCD between 2010 and 2022. Pex were defined as the presence of increased respiratory symptoms treated with intravenous (IV) antibiotics. The main outcomes were the changes in FEV1 during therapy and the proportion of patients (responders) achieving ≥90% of baseline FEV1pp values at the end of admission.ResultsThe study included 52 Pex events in 28 children with PCD. The rate of responders was 32/41 (78%) at the end of admission. Nonresponse was associated with lower median body mass index (BMI) Z‐score (−2.4 vs. −0.4, p < .01) and with a history of IV treated Pex in the previous year (p = .06). For the 22 Pex with available FEV1pp measurements at mid admission, the median relative and absolute improvement from admission to Day 7 was 9.1% and 6.2%, respectively (p‐ .001), and from Days 7 to 14 was 4.4% and 2.8%, respectively (p = .08).ConclusionIn children with PCD treated with IV antibiotics, the majority of lung function recovery happens during the first week of IV therapy. Lower BMI was associated with nonresponse to therapy.

show abstract

Comparison Between Burden of Care Partners of Individuals with Alzheimer’s Disease Versus Individuals with Other Chronic Diseases

2023

View full text Add to dashboard Cite

Background: Caregiving in Alzheimer's disease (AD) is often provided by informal care partners, who spend more hours per week on average than care partners of individuals with conditions other than AD. However, the burden of care in partners of individuals with AD has not been systematically compared to that of other chronic diseases. Objective: The current study therefore aims to compare the care partner burden of AD to that of other chronic diseases through a systematic literature review. Methods: Data was collected from journal articles published in the last 10 years, using two unique search strings in PubMed and analysed using pre-defined patient-reported outcome measures (PROMs) including the EQ-5D-5L, GAD-7, GHQ-12, PHQ-9, WPAI and the ZBI. The data was grouped according to the included PROMs and the diseases studied. The number of participants in the studies reporting burden of caregiving in AD was adjusted to reflect the number of participants in studies reporting care partner burden in other chronic diseases. Results: All results in this study are reported as a mean value and standard deviation (SD). The ZBI measurement was the most frequently used PROM to collect care partner burden (15 studies) and showed a moderate burden (mean 36.80, SD 18.35) on care partners of individuals with AD, higher than most of the other included diseases except for those characterized by psychiatric symptoms (mean scores 55. 92 and 59.11). Other PROMs such as PHQ-9 (six studies) and GHQ-12 (four studies) showed a greater burden on care partners of individuals with other chronic diseases such as heart failure, haematopoietic cell transplantations, cancer and depression compared to AD. Likewise, GAD-7 and EQ-5D-5L measurements showed a lesser burden on care partners of individuals with AD compared to care partners of individuals with anxiety, cancer, asthma and chronic obstructive pulmonary disease. The current study suggests that care partners of individuals with AD experience a moderate burden, but M. Demirbas (&)

show abstract

Caregiver Burden Due to Pulmonary Exacerbations in Patients with Cystic Fibrosis

Cited by 17 publications

References 26 publications

Being the Pillar for Children with Rare Diseases—A Systematic Review on Parental Quality of Life

Being the Pillar for Children with Rare Diseases—A Systematic Review on Parental Quality of Life

Treatment response to pulmonary exacerbation in primary ciliary dyskinesia

Comparison Between Burden of Care Partners of Individuals with Alzheimer’s Disease Versus Individuals with Other Chronic Diseases

Contact Info

Product

Resources

About