Effectiveness of a Web-Based Application to Monitor Health-Related Quality of Life

Haverman, Lotte; Rossum, Marion A J van; Veenendaal, Mira van; M, van den Berg; Dolman, Koert M.; Swart, Joost F.; Kuijpers, Taco W.; Grootenhuis, Martha A.

doi:10.1542/peds.2012-0958

Cited by 96 publications

(170 citation statements)

References 38 publications

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“…20,21 KLIK utilization procedures were developed on the basis of many years of experience using PROs in diverse clinical contexts. 21,22 Several days before a scheduled appointment, the KLIK Web site generates an automatic e-mail that invites children aged 8 to 18 years or parents of children aged 0 to 7 years to complete electronic PRO (ePRO) measures through a secure Web site.…”

Section: Klik Eprofile: Emma Children's Hospital and Sint Lucas Andrementioning

confidence: 99%

“…This study demonstrated that physician access to the ePROfile led to more frequent discussions about children's emotional health and social functioning and greater physician satisfaction with the care they provided, particularly their capacity to provide emotional support. 20 Given its positive impact, the KLIK/ePROfile is now implemented in routine clinical care throughout Emma Children's Hospital and Sint Lucas Andreas Hospital. 20 …”

Section: Klik Eprofile: Emma Children's Hospital and Sint Lucas Andrementioning

confidence: 99%

“…20 Given its positive impact, the KLIK/ePROfile is now implemented in routine clinical care throughout Emma Children's Hospital and Sint Lucas Andreas Hospital. 20 …”

Section: Klik Eprofile: Emma Children's Hospital and Sint Lucas Andrementioning

confidence: 99%

“…5 The KLIK developers administered a combination of generic and condition-specific HRQoL measures to children with juvenile idiopathic arthritis to ensure that the ePROfile provides information about all domains of the population's clinical care. 20 Finally, the frequency and timing of PROM administration depends on the goals of health care. A single PRO Figure. Example data generated through the personalized learning system for an adolescent with inflammatory bowel disease.…”

Section: Cincinnati Children's Hospital Medical Center Cincinnati Ohiomentioning

confidence: 99%

“…16 Although KLIK and ePROfile were designed to track PROs over time, preliminary reports of the system's effectiveness focus on improving the initial characterization of children's HRQoL. 20,21 In contrast, the Personalized Learning System is designed for longitudinal data tracking that patients and providers can use to formulate hypotheses about factors that might improve the patients' health. 25 Technological advances reduce several logistical barriers to PRO assessment in clinical contexts.…”

Section: Cincinnati Children's Hospital Medical Center Cincinnati Ohiomentioning

confidence: 99%

See 4 more Smart Citations

Patient Reported Outcomes as Indicators of Pediatric Health Care Quality

Bevans

Moon

Carle

et al. 2014

Academic Pediatrics

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Section: Klik Eprofile: Emma Children's Hospital and Sint Lucas Andrementioning

confidence: 99%

Section: Klik Eprofile: Emma Children's Hospital and Sint Lucas Andrementioning

confidence: 99%

“…20 Given its positive impact, the KLIK/ePROfile is now implemented in routine clinical care throughout Emma Children's Hospital and Sint Lucas Andreas Hospital. 20 …”

Section: Klik Eprofile: Emma Children's Hospital and Sint Lucas Andrementioning

confidence: 99%

Section: Cincinnati Children's Hospital Medical Center Cincinnati Ohiomentioning

confidence: 99%

Section: Cincinnati Children's Hospital Medical Center Cincinnati Ohiomentioning

confidence: 99%

See 3 more Smart Citations

Patient Reported Outcomes as Indicators of Pediatric Health Care Quality

Bevans

Moon

Carle

et al. 2014

Academic Pediatrics

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Treatment Satisfaction With and Adherence to Disease‐Modifying Antirheumatic Drugs in Adult Patients With Juvenile Idiopathic Arthritis

Tollisen

Flatø

Selvaag

et al. 2021

Arthritis Care & Research

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Objective To examine medication satisfaction and adherence and their relationships to disease variables and health‐related quality of life (HRQoL) in adults with juvenile idiopathic arthritis (JIA). Methods Patients (n = 96, mean age 25 years, 67% female) completed questionnaires about their health status 19 years after disease onset. Patients receiving biologic disease‐modifying antirheumatic drugs (bDMARDs) or methotrexate (MTX) were assessed with the 8‐item Morisky Medication Adherence Scale (MMAS‐8) and the Treatment Satisfaction Questionnaire for Medication (TSQM), including dimensions of effectiveness, side effects, convenience, and global satisfaction. Results DMARDs were received by 52 patients (54%) (mean age 25 years, 75% female), of which 28 received MTX and 37 received bDMARDs. Patients receiving combination therapy of MTX and bDMARDs (n = 15) reported higher satisfaction with bDMARDs than MTX in the dimensions of side effects and global satisfaction (mean ± SD 92.9 ± 15.5 versus 56.2 ± 30.9, and mean ± SD 67.6 ± 19.8 versus 47.1 ± 21.7; P < 0.001 and P = 0.016, respectively). Patients receiving either bDMARDs (n = 22) or MTX (n = 13) reported higher satisfaction with bDMARDs than MTX for the dimensions of effectiveness and global satisfaction (mean ± SD 78.7 ± 15.4 versus 60.2 ± 19.9, and mean ± SD 73.6 ± 17.7 versus 52.3 ± 23.9; P = 0.004 and P = 0.005, respectively). Nearly one‐half of patients (46%) reported low adherence (MMAS‐8 score <6) and 25% high adherence (MMAS‐8 score = 8). Higher levels of pain, psychological distress, more active joints, and current MTX use were the strongest correlates of lower medication satisfaction. Perceived medication effectiveness and global satisfaction correlated positively with physical and mental HRQoL. Conclusion Patients with JIA were more satisfied with bDMARDs than MTX, and 46% reported low adherence. Higher medication satisfaction was associated with better HRQoL.

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Health‐related quality of life in children with Robin sequence

Basart

Oers

Paes

et al. 2016

American J of Med Genetics Pt A

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This patient-reported outcome (PRO) study reports on 102 children with Robin sequence (RS) and their parents. There has been differentiated between those with isolated RS and those with RS as part of a syndrome, and take various treatments into account. All RS families from an earlier described cohort were invited to participate. Parents and RS children completed online questionnaires regarding health-related quality of life (HRQoL), satisfaction with appearance, parental distress, and RS specific topics. Results were compared with the Dutch norm population if available. There was no major difference in HRQoL in RS children and the Dutch norm population, nor between children with isolated RS and those with RS as part of a syndrome. The latter is likely due to the large percentage of children with Stickler syndrome, and small number of RS children with intellectual disability. Parental distress was higher in RS children with syndromes compared to parents of isolated RS children. When comparing various treatments, the subgroup treated by mandibular distraction showed a tendency of lower HRQoL scores, less satisfaction with appearance, and more parental distress. Also in the NPA group parents showed a tendency of more parental distress. Subgroups for each treatment were very small, however, and firm conclusions cannot be drawn. In this study, HRQoL in RS children is demonstrated comparable to the norm population, despite variations in treatment, possibly with less favorable outcome for children who received mandibular distraction. Markedly larger studies are needed to allow more reliable comparison of PROs in various treatments, and to incorporate PROs in management guidelines to obtain optimal patient care. © 2016 Wiley Periodicals, Inc.

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Effectiveness of a Web-Based Application to Monitor Health-Related Quality of Life

Abstract: Our web-based application to systemically monitor HRQoL problems in pediatric rheumatology contributed significantly to communication about psychosocial issues in a positive way. We recommend implementation of ePROs in pediatric clinical practice.

Cited by 96 publications

References 38 publications

Patient Reported Outcomes as Indicators of Pediatric Health Care Quality

Patient Reported Outcomes as Indicators of Pediatric Health Care Quality

Treatment Satisfaction With and Adherence to Disease‐Modifying Antirheumatic Drugs in Adult Patients With Juvenile Idiopathic Arthritis

Health‐related quality of life in children with Robin sequence

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