Emma Children’s Hospital, Amsterdam, the Netherlands
In Amsterdam, a team is working on e-mental health applications for children with chronic or life-threatening diseases and their parents.
In Amsterdam, with Martha Grootenhuis, PhD, as head of research and director of the Pediatric Psychology Department in the Emma Children’s Hospital, a team is working on e-mental health applications for children with chronic or life-threatening diseases and their parents. Over the years they have accomplished outcome research, studied effectiveness of interventions and translated their research into clinical practice.
During the SPPAC 2015 meeting in San Diego they shared their experiences during the symposium, Interventions and e-Health Applications for Children with a Chronic Illness and Their Parents.
Lotte Haverman, PhD, shared the KLIK program. The goal of the KLIK program is to monitor the Health Related Quality of Life (HRQOL) and psychosocial functioning of children (aged 0–18) with chronic illnesses over extended periods of time. Pediatricians retrieve an ePROfile from the website and discuss this with the patients and parents. Feedback of Patient Reported Outcomes (PROs) has been effective in increasing discussion about emotional and psychosocial functioning. The KLIK program is implemented as part of daily clinical care for over 3,000 patients in eight hospitals in the Netherlands.
A Web-based portal for PROs in clinical practice also needs questionnaires for parents. A relevant questionnaire was not available to monitor parental distress over time. Therefore the group, with PhD student Hedy van Oers, developed the Distress Thermometer for Parents (DT-P). Based on the DT used in adult oncology medical care, literature and clinical experience, the DT-P was created. It consists of a distress thermometer from 0 (no distress) to 10 (extreme distress), a problem list (practical, social, emotional, physical, cognitive and parenting domains) and additional questions. In a study with 706 participating parents the DT-P has sufficient psychometric properties and appears a useful rapid screening tool for monitoring parental distress. The DT-P is now being used within the KLIK portal, where parents complete this questionnaire once a year.
Whenever children present themselves with difficulties, it is important to provide them relevant interventions. Linde Scholten, PhD, talked about the course program Op Koers (OK). It is a Cognitive Behavioral Therapy group intervention developed to enhance psychosocial adjustment by teaching coping skills, using cognitive-behavioral techniques. OK consists of eight weekly group sessions of 90 minutes, and is carried out by two psychologists according to a detailed manual. Specific modules are developed for children (8-12 years) and adolescents (12-18 years) with a chronic disease, their parents and siblings. To overcome practical barriers such as travelling time and distance, the face-to-face program is recently translated into online modules. The module for children with cancer has been tested on feasibility already.
For information, email Grootenhuis.
References
Haverman, L., van Rossum, M.A., van Veenendaa,l M., van den Berg, J.M., Dolman, K.M., Swart, J., Kuijpers, T.W., & Grootenhuis, M.A. (2013). Effectiveness of a web-based application to monitor health-related quality of life. Pediatrics, 131 (2), e533-543.
Haverman, L., van Oers, H.A., Limperg, P.F., Houtzager, B.A., Huisman, J., Darlington, A.S., et al. (2013). Development and validation of the distress thermometer for parents of a chronically ill child. J Pediatr., 163 (4),1140-1146.
Maurice-Stam, H., Scholten, L., de Gee, E.A., van der Zanden, R.A., Conijn, B., Last, B.F., & Grootenhuis, M.A. (2014). Feasibility of an online cognitive behavioral-based group intervention for adolescents treated for cancer: A pilot study. J Psychosoc Oncol., 32 (3), 310-321.
Scholten, L., Willemen, A.M., Last, B.F., Maurice-Stam, H., van Dijk, E.M., Ensink, E., et al. (2013). Efficacy of psychosocial group intervention for children with chronic illness and their parents. Pediatrics, 131 (4), e1196-1203.