Parent and Family Functioning in Pediatric Inflammatory Bowel Disease

Cushman, Grace K.; Shih, Sharon; Reed-Knight, Bonney

doi:10.3390/children7100188

Cited by 11 publications

(9 citation statements)

References 44 publications

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“…For parents of children with IBD, higher disease activity has been shown to be detrimental to parental well-being in terms of mental and physical quality of life, family functioning, and work productivity [ 22 23 24 ]. In addition, shorter duration since their child’s last flare is associated with increased parental distress [ 22 24 ], and parents have elevated anxiety, and significantly more burnout symptoms, than parents of healthy children [ 25 26 ]. Their greatest stressors have been shown to be fears about their child’s future health, social relations and future employment options [ 27 ].…”

Section: Discussionmentioning

confidence: 99%

Agreement Level of Inflammatory Bowel Disease Symptom Reports between Children and Their Parents

Vernon‐Roberts

Rouse

Bowcock

et al. 2023

Pediatr Gastroenterol Hepatol Nutr

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Purpose Children with inflammatory bowel disease (IBD) frequently undergo clinical assessments, involving triadic communication between clinician, parent, and child. During such encounters parents are traditionally the main communicator of information on their child’s IBD, including subjective symptom reports. The level of agreement between children and their parents for IBD symptoms is poorly understood, and this study aimed to examine this factor. Methods This was a cross-sectional study among children with IBD, and one parent. A validated paediatric IBD symptom report tool (IBDnow) enabled children and their parent to rate seven pain, well-being, and stool metrics, with dyads completing the tool concurrently. Results were assessed using: Individual agreement: proportion of identical symptom reports by each dyad (ideal score >0.7); Category agreement: percentage of identical reports for IBDnow metrics for the cohort; Inter-rater reliability: Gwet’s AC1 coefficient with higher scores indicating better reliability (maximum=1). Results Seventy-four parent/child dyads participated; child’s mean age 12.2 years (standard deviation [SD] 2.9, range 6-16), mean time since diagnosis 2.8 years (SD 3), 54% female, 73% had Crohn’s Disease. Mean individual agreement level was 0.6, with 27% of dyads agreeing on ≥6/7 IBDnow metrics. Category agreement was reported by 61% of dyads, 20% of parents overestimated, and 19% underestimated, their child’s symptoms. Inter-rater reliability ranged from fair to good. Conclusion These results should improve clinician awareness of how IBD symptom reports from parents may introduce bias. Children should be considered the most important source of symptom reports, and tools such as IBDnow utilised to enhance communication.

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Section: Discussionmentioning

confidence: 99%

Agreement Level of Inflammatory Bowel Disease Symptom Reports between Children and Their Parents

Vernon‐Roberts

Rouse

Bowcock

et al. 2023

Pediatr Gastroenterol Hepatol Nutr

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“…This is clearly noted in a recent review by Cushman et al . [ 30 ] who emphasize the importance of assessing parent and family functioning in pediatric IBD. In addition, Herzer et al .…”

Section: Discussionmentioning

confidence: 99%

The impact of inflammatory bowel diseases on the quality of life of Saudi pediatric patients: A cross-sectional study

Hammo¹,

Alhadab²,

AlMahamed³

et al. 2022

Saudi J Gastroenterol

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Background: Inflammatory bowel disease (IBD) is a chronic gastrointestinal tract disorder characterized by periods of exacerbations and remissions that affect multiple aspects of a pediatric patient's quality of life. The purpose of this study is to describe the health-related quality of life of Saudi pediatric IBD patients and to determine the influencing factors which can affect it. Methods: This is a single center cross-sectional descriptive study, conducted between December 2019 and December 2021. Patients aged between 9 and 16 years diagnosed with IBD were included; IMPACT III quality of life questionnaire was used. Results: Thirty-eight patients participated in the study, 57.9 % being male, with a mean age of 12.48 ± 2.72 years, and 55.3 % of patients were diagnosed with Crohn's disease (CD). The most frequent medications were aminosalicylic acids derivatives, followed by immune-modulators and biologics. The IMPACT III quality of life questionnaire has shown lower scores in IBD patients in comparison to healthy control groups. Patients with active disease have lower total and sub-domain scores than patients with inactive disease. We found no correlation between health-related quality of life (HrQOL) and the number of medications used, disease duration, or gender. Conclusions: Pediatric IBD patients have significantly lower HrQOL scores than healthy children. Disease activity was found to be a predictor for poor HrQOL outcome.

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“…This may be further aggravated in our subgroup of single pIBD mothers who carry the burden alone. It is also well known that chronic conditions like pIBD additionally represent a high-impact stress for parents [ 45 , 46 , 47 ]. Mothers of pIBD children report higher levels of psychological distress in comparison to healthy controls [ 48 ] and take on numerous tasks in disease management [ 49 ].…”

Section: Discussionmentioning

confidence: 99%

Following Pediatric and Adult IBD Patients through the COVID-19 Pandemic: Changes in Psychosocial Burden and Perception of Infection Risk and Harm over Time

Koletzko

Klucker

Thi

et al. 2021

JCM

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Background: COVID-19-associated restrictions impact societies. We investigated the impact in a large cohort of inflammatory bowel disease (IBD) patients. Methods: Pediatric (pIBD) and adult patients and pIBD parents completed validated questionnaires for self-perceived stress (Perceived Stress Questionnaire, PSQ) and quality of life from July to October 2020 (1st survey) and March to April 2021 (2nd survey). Analyses were stratified by age groups (6–20, >20–40, >40–60, >60 years). Perceived risk of infection and harm from COVID-19 were rated on a 1–7 scale. An index for severe outcome (SIRSCO) was calculated. Multivariable logistic regression analysis was performed. Results: Of 820 invited patients, 504 (62%, 6–85 years) patients and 86 pIBD parents completed the 1st, thereof 403 (80.4%) the 2nd survey. COVID-19 restrictions resulted in cancelled doctoral appointments (26.7%), decreased physical activity, increased food intake, unintended weight gain and sleep disturbance. PSQ increased with disease activity. Elderly males rated lower compared to females or younger adults. PSQ in pIBD mothers were comparable to moderate/severe IBD adults. Infection risk and harm were perceived high in 36% and 75.4%. Multivariable logistic models revealed associations of higher perceived risk with >3 household members, job conditions and female gender, and of perceived harm with higher SIRSCO, unintended weight change, but not with gender or age. Cancelled clinic-visits were associated with both. SARS-CoV-2 antibodies prior 2nd infection wave were positive in 2/472 (0.4%). Conclusions: IBD patients report a high degree of stress and self-perceived risk of complications from COVID-19 with major differences related to gender and age. Low seroprevalence may indicate altered immune response.

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Parent and Family Functioning in Pediatric Inflammatory Bowel Disease

Cited by 11 publications

References 44 publications

Agreement Level of Inflammatory Bowel Disease Symptom Reports between Children and Their Parents

Agreement Level of Inflammatory Bowel Disease Symptom Reports between Children and Their Parents

The impact of inflammatory bowel diseases on the quality of life of Saudi pediatric patients: A cross-sectional study

Following Pediatric and Adult IBD Patients through the COVID-19 Pandemic: Changes in Psychosocial Burden and Perception of Infection Risk and Harm over Time

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