The PedsQL™ Family Impact Module: Preliminary reliability and validity

Varni, James W.; Sherman, Stanley W; Burwinkle, Tasha M.; Dickinson, Paige; Dixon, Pamela

doi:10.1186/1477-7525-2-55

Cited by 518 publications

(286 citation statements)

References 22 publications

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“…The PedsQL Family Impact Module (FIM) 27 is a 36-item reliable and validated measure that was completed by the parent respondent to measure the impact of EoE on the parents and families of the study subjects. The FIM yields a Total score; a Parent HRQoL Summary score that includes subscales for Physical, Emotional, Social, and Cognitive Functioning, Communication, and Worry; and a Family Functioning Summary score that includes Daily Activities and Family Relationships.…”

Section: Methodsmentioning

confidence: 99%

Health‐Related Quality of Life Over Time in Children With Eosinophilic Esophagitis and Their Families

Klinnert

Silveira

Harris

et al. 2014

J. pediatr. gastroenterol. nutr.

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Objectives Existing treatments for pediatric EoE effectively reduce inflammation. However, impact of treatment on health-related quality of life (HRQoL) over time for pediatric patients with EoE and their families has not been systematically assessed. We hypothesized that individualized multidisciplinary treatment would improve both child and family HRQoL over time, with improvements associated with decreased symptom severity. Methods Children with EoE treated in 4 tertiary care centers were enrolled. Baseline assessments occurred at the time of patients’ first evaluation; follow-up assessments occurred at 2 and 6 months after baseline. Presence and severity of 8 EoE symptoms were measured. HRQoL was measured with the PedsQL parent proxy-report (PR), child self-report (CR), and Family Impact Module (FIM). Statistical analyses used mixed-effects modeling to test changes over time for child and family HRQoL. Results Ninety-seven children were enrolled (ages 2–18 years; mean age, 7.7 yrs +/− 4.8 y; 78% male; 80% Caucasian). Baseline mean symptom number was 3.5 (SD, 2.3) and symptom severity was 5.5 (SD, 4.5). HRQoL scores were significantly related to symptom scores (P < 0.001). EoE symptom severity decreased during the study (P=0.03). PR PedsQL Total and FIM Total scores improved from baseline to 6 months (respectively, adjusted means 78.4 vs 81.0, P=0.0006; 68.9 vs 70.1, P=0.03). Interactions with baseline symptom severity revealed that subjects with lowest symptom severity showed the most improved HRQoL scores (P=0.0013). Conclusions HRQoL improved during the course of evaluation and treatment, with positive changes being strongest for patients with less symptom severity at baseline.

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Section: Methodsmentioning

confidence: 99%

Health‐Related Quality of Life Over Time in Children With Eosinophilic Esophagitis and Their Families

Klinnert

Silveira

Harris

et al. 2014

J. pediatr. gastroenterol. nutr.

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“…The PedsQL Family Impact Module is a 36-item generic caregiver burden measure that contains subscales for the caregiver's physical, emotional, social, and cognitive functioning; communication; worry; daily activities; and family relationships. The measure can be scored to yield a Parent HRQL Summary Score using the 20 items from the physical, emotional, social, and cognitive functioning subscales, and a Family Functioning Summary Score using the eight items from the daily activities and family relationship subscales [37]. Scores are first reverse-scored and linearly transformed to a 0-100 scale, and then summed [38].…”

Section: Methodsmentioning

confidence: 99%

Restless legs syndrome and its relationship with anxiety, depression, and quality of life in cancer patients undergoing chemotherapy

et al. 2010

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Introduction Extended half-life factor products have reduced annualized bleeding rates in hemophilia patients. The impact of extended half-life versus conventional factor products on hemophilia caregiver burden has not been investigated. This study aimed to evaluate caregiver burden in extended half-life versus conventional factor products for hemophilia A and B. Methods This cross-sectional web-based study of caregivers of people with hemophilia A or B was recruited from a panel research company and by word of mouth. Participants completed the Hemophilia Caregiver Impact measure, the PedsQL Family Impact Module (PedsQL), and the Work Productivity and Activity Impairment Questionnaire (WPAI). We also collected demographic, insurance coverage, and medical information related to the hemophilia patient(s). Burden differences were assessed using linear regression and matched cohort analyses. Results The sample (n = 448) included 49 people who were caring for people on extended half-life factor products. Worse caregiver burden was associated with more infusions per week and more bleeds in the past 6 months. Regression analyses suggested that caring for someone who is on a extended half-life factor product is associated with lower emotional impact (β = − 0.11, p < 0.05, Adjusted R 2 = 0.06), and shows a trend association with lower practical impact (β = − 0.09, p < 0.10, Adjusted R 2 = 0.05). The matched cohort analysis also revealed that people on extended half-life factor product had lower Emotional Impact and Practical Impact scores (t = − 2.95 and − 2.94, respectively, p < 0.05 in both cases). No differences were detected on the PedsQL or the WPAI. Conclusion The reduced required frequency of factor product infusions of extended half-life factor products appears to reduce the emotional distress and practical burden of caregiving. Future work should evaluate the longitudinal impact.

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“…Problems that are covered in the area of physical functioning refer to the feeling of fatigue, headache, physical weakness and presence of stomachaches. Th e rest of the questionnaire covers the problems of emotional functioning (anxiety, sadness, anger, frustration, and helplessness or hopelessness); social functioning (the feeling of isolation, diffi culties of receiving help from others, diffi culties in fi nding time or energy for social activities); cognitive functioning (diffi culties in the area of attention, memory and thinking); communication (the lack of understanding of situation in the family from others, diffi culties of parents to talk about child's health condition with health professionals and other people); worries (worries about the eff ectiveness of treatment, side eff ects of drugs/medical therapy, concern how others will react to the child's condition, worries about the impact of child's illness on other family members, as well as worries about the child's future); daily activities (family activities take too much time and eff ort, diffi culties in fi nding time to complete housework and feeling tired to fi nish the housework) and family relations (the lack of communication and confl icts among family members, diffi culties in mutual decision-making and solving family issues, stress among family members) 12 . In every area of the questionnaire, the question of how much problems a mother has in completing certain choirs has, as a result of the child's health, during the last month, is proposed and one answer is chosen.…”

Section: Measuring Instrument and Proceduresmentioning

confidence: 99%

Quality of Life in Mothers of Children with Cerebral Palsy

Glinac

Matović

Delalić

et al. 2017

acc

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SUMMARY -Th e aim of the study was to investigate whether there is diff erence in the quality of life between mothers of children with cerebral palsy and mothers of healthy children, as well as whether the quality of life in mothers of children with cerebral palsy depends on their level of education, child's mobility and child's functional status. A total of 141 mothers participated in the research. Mothers were divided into two groups, 71 mothers of children with cerebral palsy and 70 mothers of healthy children from the Tuzla Canton (Bosnia and Herzegovina). A multidimensional questionnaire PedsQL™ 2.0 Family Impact Mode was used for assessment of the impact of pediatric chronic health condition on the mothers' functioning. Th e level of functional disability of the child was measured by the Gross Motor Function Classifi cation System (GMFCS levels I-V) scale. Mothers of children with cerebral palsy had poorer quality of life than mothers of healthy children in all investigated domains. In relation to mobility of the child, the quality of life was worse in mothers whose children did not move in the area of social functioning in comparison to mothers whose children had the ability to move independently. A statistically signifi cant negative correlation existed between functional status of a child measured with GMFCS and social functioning of mothers, mothers' daily activities, parental functioning, family functioning, and overall quality of life of mothers.

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The PedsQL™ Family Impact Module: Preliminary reliability and validity

Cited by 518 publications

References 22 publications

Health‐Related Quality of Life Over Time in Children With Eosinophilic Esophagitis and Their Families

Health‐Related Quality of Life Over Time in Children With Eosinophilic Esophagitis and Their Families

Restless legs syndrome and its relationship with anxiety, depression, and quality of life in cancer patients undergoing chemotherapy

Quality of Life in Mothers of Children with Cerebral Palsy

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