Quality of Life of Caregivers of Children With Congenital Glaucoma: Development and Validation of a Novel Questionnaire (CarCGQoL)

Gothwal, Vijaya K.; Bharani, Seelam; Mandal, Anil K.

doi:10.1167/iovs.14-15905

Cited by 30 publications

(52 citation statements)

References 36 publications

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“…5,6 However, when assessing the success of childhood glaucoma treatment, the impact caused by the disease on the quality of life of patients and caregivers should also be assessed because the repercussion of the disease on the quality of life of the latter could come to bear on the quality of the care provided to the patient. 7 In the present study, parents reported worse quality of life than children, according to results for the GQL-15 survey of 32.30 ± 11.56 for children vs. 37.52 ± 14.59 for caregivers (p = 0.001). The parameter that was most closely related to quality of life and visual function was visual field MD for the best eye, with a statistically significant correlation between the result of GQL-15 and visual field MD (children: R = 0.63; p < 0.01 and caregivers: R = 0.81; p < 0.001).…”

Section: Discussionsupporting

confidence: 46%

“…This could impact their education, particularly in the first few months after diagnostic and surgery. 1,7 In some occasions, childhood glaucoma is associated to a systemic disease that will require treatment, thus increasing the need for checkups. 8 At present, in order to assess the impact of chronic diseases such as pediatric asthma 9 or oncological diseases, 10 the caregivers are asked to fill in quality of life questionnaire and the financial impact that said diseases can have on family resources as well as the physical stress that could influence the care given to cover the medical as well as physical and social needs of the children.…”

Section: Discussionmentioning

confidence: 99%

“…In one third of cases, studies report moderate or severe depression according to a questionnaire analyzing the emotional and psychological burden on caregivers. 12 Gothwal et al 7 developed a questionnaire on the quality of life of caregivers of children with primary congenital glaucoma after surgery in order to assess their quality of life, reporting on the problems they faced in daily life. Said authors analyzed the results of a cohort of 119 caregivers consecutively selected with 93% participation rate.…”

Section: Discussionmentioning

confidence: 99%

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Estudio de la calidad de vida y la función visual en niños con glaucoma en España

Nieves-Moreno

Fernández

Medrano

et al. 2019

Archivos de la Sociedad Española de Oftalmología

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Available online xxxKeywords: Childhood glaucoma Quality of life Visual function a b s t r a c t Objective: To evaluate the effect of glaucoma on visual function, as well as quality of life in children and quality of life perceived by caregivers in children up to 16 years of age. Material and methods: An observational and prospective study was designed using the questionnaire GQL-15 (Glaucoma Quality of Life) and conducted on children and caregivers. The questionnaire VFQ-25 (Visual Functioning Questionnaire) was conducted on children. Different variables of the clinical history that could influence the quality of life and visual function were recorded.Results: The study included 24 patients with a mean age of 9.13 ± 3.08 years, and included 3 with unilateral involvement, and 20 diagnosed with primary congenital glaucoma. Parents reported a worse quality of life than children. The result of the GQL-15 survey was 32.3 ± 11.56 points in children and 37.52 ± 14.59 points in caregivers (p = 0.001). The parameter most related to quality of life and visual function was the mean deviation (MD) of the visual field in the best eye. A statistically significant correlation was found between the result of GQL-15 and the mean deviation of the visual field (children: R = 0.63, p < 0.01, caregivers: R = 0.81, p< 0.001). Conclusions:Functional loss has an impact on the quality of life and visual function in children with glaucoma, although the quality of life perceived by the caregivers is worse than that perceived by the child. Pages 6 R = 0,63; p < 0,01 y cuidadores: R = 0,81; p < 0,001).Conclusiones: El daño funcional visual producido por el glaucoma tiene un impacto importante en la calidad de vida y en la función visual de los niños con glaucoma, si bien la calidad de vida percibida por los cuidadores es peor que la percibida por el niño.

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Section: Discussionsupporting

confidence: 46%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

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Estudio de la calidad de vida y la función visual en niños con glaucoma en España

Nieves-Moreno

Fernández

Medrano

et al. 2019

Archivos de la Sociedad Española de Oftalmología

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“…In contrast to the measures available for adults with visual impairment (e.g., 37,45,49,67,68,99,120 ), there has been a paucity of effort in the development and application of such measures for children; however, several instruments have recently been developed to target this specific population and are now available for use. 10,23,31,41,42,60,101,103 If future studies would incorporate measures for functional status and/or quality of life as secondary outcome measures, in addition to their primary outcome measures, it would facilitate comparison between studies using meta-analysis.…”

Section: Recommendations For Practice and Future Researchmentioning

confidence: 99%

Interventions to improve functioning, participation, and quality of life in children with visual impairment: a systematic review

Elsman

Baaj

Rens

et al. 2019

Survey of Ophthalmology

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Editors Keywords: visual impairment children rehabilitation review functioning participation a b s t r a c t Visual impairment in childhood often has life-long implications. To aim for the highest levels of functioning, participation, and quality of life and to ensure children's well-being, children should be entitled to the most effective rehabilitation programs. We review evidence for the effectiveness of rehabilitation interventions for children with visual impairment to improve skills and behavior, thereby improving participation and quality of life as an ultimate goal. Of the 441 potentially relevant articles identified, 66 studies met our inclusion criteria (i.e., 28 randomized controlled trials, 18 nonrandomized controlled trials, and 20 before-after comparisons). The results suggest that sports camps, prescription and training in the use of low vision devices, and oral hygiene programs might be effective in improving functioning and elements of participation and quality of life in children with visual impairment. Other interventions showed mixed or negative results. The results should be interpreted with caution because of moderate to high risk of bias and suboptimal reporting. Heterogeneity of results and the use of over 50 different outcome measures prevented a meta-analysis. Future studies should focus on promising interventions for which effectiveness is still unclear (e.g., mobility, social skills), with adequately designed methodology.

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“…Indeed, existing studies are largely restricted to caregiver burden and QoL in physical illnesses, such as Alzheimer’s disease and leukemia [29–34], with little focus on psychiatric illnesses, particularly OCD. Studies in psychiatric conditions have largely focused on schizophrenia [35–40].…”

Section: Introductionmentioning

confidence: 99%

Quality of life and burden in caregivers of youth with obsessive-compulsive disorder presenting for intensive treatment

Hamblin

Nadeau

et al. 2018

Comprehensive Psychiatry

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Background Pediatric obsessive-compulsive disorder (OCD) is associated with deleterious familial effects; caregivers are often enmeshed in the disorder and can experience considerable burden and decreased quality of life (QoL). Consequently, this study examined burden and QoL in caregivers of youth with OCD enrolled in an intensive outpatient or partial hospitalization program. Method The relationships between caregiver QoL and burden and the following variables were investigated: OCD symptom severity, functioning (youth functional impairment, general family functioning), family (family accommodation, parental relationship satisfaction, positive aspects of caregiving), and comorbid psychopathology (caregiver anxiety and depressive symptoms, youth internalizing and externalizing behaviors). Seventy-two child and caregiver dyads completed clinician- and self-rated questionnaires. Results Components of caregiver QoL correlated with caregiver-rated functional impairment, family accommodation, youth externalizing behaviors, and caregiver psychopathology. Aspects of caregiver burden correlated with child OCD symptom severity, functional impairment related to OCD, as well as caregiver and child comorbid psychopathology. Caregiver depressive symptoms predicted caregiver QoL, and caregiver depressive symptoms and child externalizing symptoms both predicted caregiver burden. Caregiver burden did not mediate the relationship between obsessive-compulsive symptom severity and caregiver QoL. Conclusion Ultimately, elucidating factors associated with increased caregiver burden and poorer QoL is pertinent for identifying at-risk families and developing targeted interventions.

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Quality of Life of Caregivers of Children With Congenital Glaucoma: Development and Validation of a Novel Questionnaire (CarCGQoL)

Cited by 30 publications

References 36 publications

Estudio de la calidad de vida y la función visual en niños con glaucoma en España

Estudio de la calidad de vida y la función visual en niños con glaucoma en España

Interventions to improve functioning, participation, and quality of life in children with visual impairment: a systematic review

Quality of life and burden in caregivers of youth with obsessive-compulsive disorder presenting for intensive treatment

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