Implementation of electronic patient reported outcomes in pediatric daily clinical practice: The KLIK experience.

Abstract

The use of patient reported outcomes (PROs) in pediatric practice is effective in increasing discussion about emotional and psychosocial functioning. This finding forms the basis for implementing KLIK: a web-based program using electronic PROs (ePROs). The aim of this article is to describe the KLIK implementation in line with the 8 methodological recommendations composed by the International Society for Quality of Life Research (ISOQOL). (1) Goal of KLIK: to monitor and screen children (aged 0–18) with chronic illnesses over extended periods of time. (2) Children aged 8–18 complete the questionnaires themselves. Parents complete the questionnaires for young children. (3) The basis is a generic HRQOL questionnaire. Disease-specific HRQOL and psychosocial questionnaires are also available. (4) A web-based mode was selected. (5) The questionnaires in KLIK are available prior to a consultation. Pediatricians retrieve the ePROfile from the website (www.hetklikt.nu) and discuss it with the patients. The ePROfile consists of a literal representation of the answers and a graphic presentation. (6) Various tools are used to aid in its interpretation. (7) All members of the multidisciplinary team receive training in how to use the website and how to adequately respond to the patient’s ePROfile. (8) Improvements to and evaluation of KLIK are ongoing. Since implementation began, 17 patient groups, 160 professionals and >1,450 patients have started using KLIK. The implementation of KLIK appears to be feasible and workable. Many pediatricians have shown an interest in using KLIK and it is therefore being expanded and adapted for different patient groups and hospitals.

Dutch normative data and psychometric properties for the Distress Thermometer for Parents

“…The DT-P consists of (1) a ‘thermometer’ ranging from 0 (no distress) to 10 (extreme distress) on which parents rate their overall distress in the past week, where a thermometer score of 4 or higher indicates clinically elevated distress, (2) a problem list which inquires the occurrence of 37 (child age < 2 years) or 34 (child age ≥ 2 years) everyday problems over the past week across six problem domains (practical, social, emotional, physical, cognitive, and parenting), where problem domain scores are the sum of item scores (yes = 1, no = 0) within that problem domain, and (3) additional questions concerning: perceived support from surroundings, perceived lack of understanding from people concerning their situation, parental chronic illness, and whether or not the parent would like to talk to a professional about his or her situation. In clinical practice, the DT-P is used in daily clinical practice to screen for parental distress and to refer to psychosocial care, but also as part of standard battery in clinics [12]. …”

Real-world implementation of electronic patient-reported outcomes in outpatient pediatric cancer care

“…6 Evidence for the effect of the use of the KLIK ePROfile in pediatrics is an increased and more detailed discussion of psychosocial functioning, less undetected psychosocial problems, and higher HCP-reported satisfaction with care compared with consultations without a KLIK ePROfile available. 6,19 Most studies regarding the use of PROs in clinical practice are described within an experimental setting, but what is still lacking is the actual implementation as part of routine care. [20][21][22] Thus, although effectiveness research shows the use of PROs to have positive effects, 5,[11][12][13]23,24 making the transfer to real-world clinical practice remains a challenge, and it is estimated that two thirds of such interventions fail to be successfully implemented.…”

“…[27][28][29] The KLIK method is being implemented in 30 pediatric chronic disease groups in 10 different hospitals. 19 However, within the pediatric oncology setting, only experience with feedback of PROs to patients and parents after the end of treatment was available, and this was gained within a clinical research setting. 5 Implementing a new intervention to become part of standard care in a complex setting such as pediatric oncology during early stages of treatment has specific challenges for the implementation fidelity.…”

“…The security, functions, and validated questionnaires of the KLIK website were thoroughly described earlier. 18,19,34 In addition to the generic HRQoL questionnaires, a cancer-specific questionnaire (PedsQL 3.0 Acute Cancer Module) 36 was added to generate the ePROfile so that both generic and cancer-specific needs were addressed.…”

Male gender, school attendance and sports participation are positively associated with health‐related quality of life in children and adolescents with congenital bleeding disorders

“…HCCC uses the "KLIK" system as part of standard care to monitor and discuss HRQOL. 6,20 KLIK (in Dutch: Kwaliteit Leven In Kaart, in English: quality of life in clinical practice) is a webbased tool developed for the use of PROs in daily clinical practice. 21 It is designed to monitor HRQOL and improve the communication about HRQOL and psychosocial issues between the healthcare provider and patient.…”