Universiteit Leiden

nl en

Research project

Screening and self-management interventions for chronic conditions

The major aim is to develop, evaluate, and implement screening instruments and self-management interventions for patients with chronic conditions in order to optimize health care by tailoring interventions to those patients at risk for adjustment problems.

Funding
Innovatiefonds Zorgverzekeraars Innovatiefonds Zorgverzekeraars
 
Nierstichting Nierstichting
 
Het Raamwerk
 
Pfizer Pfizer
 
ZonMW ZonMW

Having a chronic somatic condition can result in a variety of impairments in patients’ daily lives, including not only physical complaints such as pain, itch, and fatigue, but also problems of negative mood and impairments in social relationships. This is especially true for patients with a psychological risk profile (e.g., patients with elevated levels of distress), which is an estimated 30-40% of patients.

Both face-to-face and e-Health cognitive-behavioral treatments have shown to be effective in helping patients cope with these impairments. Although these approaches have proven to positively affect adjustment in a variety of diseases, they are, on average, only modestly effective, and the effects are not, or only partly, maintained at follow-up. Also, high dropout rates and low treatment adherence are often reported.

One of the problems is the large individual variability in treatment outcomes due to non-selection of patients – thus also including patients who are adjusting well on their own – and a lack of personalization of treatment to individual patient profiles. This research program encompasses a series of applied studies developing and testing the effectiveness of screening instruments to select patients at risk for adjustment problems and to develop and test the effectiveness of self-management interventions to address these problems.


This research program is divided into a number of (PhD) projects: 

1. e-Health self-management screening and treatment for patients with chronic somatic conditions

Different research projects are performed to develop and evaluate disease-generic e-Health self-management screening and treatment for patients with chronic somatic conditions, including rheumatoid arthritis, psoriasis, and chronic pain, in collaboration with the Radboud university medical center, among other centers. For more information on the separate projects, see research program ‘e-Coach: Tailored cognitive-behavioral e-Health care for patients with chronic somatic conditions’.

Supervisors Leiden University: Prof.dr. Andrea Evers & Dr. Henriët van Middendorp.


2. The development of a screening instrument and treatment protocol for kidney donors at risk for emotional and physical problems on the longer term.

Living kidney donor transplantation is the preferred treatment for patients with chronic kidney failure, as a result of the large advantages for the recipient and the relatively low risks for the donor. Although most living kidney donors are very healthy before donation and experience no long-term problems after donation, a minority of 10 to 25 percent of donors report emotional and physical problems at the longer term after donation (e.g., depressed mood, fatigue, or pain). Currently, no formal psychosocial screening criteria or psychosocial care program exists for kidney donors. The aim of this project, which is conducted in collaboration with the Radboud university medical center and other centers, is to enable early identification of donors at risk of longer-term emotional and physical problems by means of the development of : 1) a care protocol with regard to donation, to optimally prepare donors to a potential donation and to offer support after the donation if needed, 2) a screening instrument developed to assess donors at risk for longer-term problems, which can be implemented as part of the standard care for potential kidney donors, and 3) a brief e-Health self-management treatment for donors at risk, to enable optimal longer-term functioning (see also research program ‘e-Coach: Tailored cognitive-behavioral e-Health care for patients with chronic somatic conditions’).

Supervisors Leiden University: Prof.dr. Andrea Evers & Dr. Henriët van Middendorp.
PhD student: Lieke Wirken.


3. Self-management screening and treatment with e-Coaching for adjustment problems and coping in renal patients

Due to physical symptoms (e.g., fatigue) and disabilities (e.g., work and social relations), a chronic kidney disease has a large impact on all life areas and on the independence of the patient. Many patients are able to adjust to these circumstances with minimal support and education, but about 30% has adjustment problems such as severe fatigue, itch, or mood complaints. For this group, only very limited psychosocial care is offered at this moment. By routinely mapping the most relevant areas of functioning and coping skills of patients by means of a brief screening instrument, the development of problems can be acknowledged in time. This can be connected to further stepwise diagnostics and treatment, of which the content and intensity are tailored to the (level of) problems and coping skills of the individual patient. Through such screening and treatment, which are based on the literature and patient experiences, adjustment problems can be prevented or solved. Additionally, through the teaching of coping skills, the independence of patients in dealing with their condition will  be increased. Offering these instruments and treatments via the internet is in line with the need of patients to remain in control when dealing with their disease within their daily life environment (see research agenda) and leads to more accessible and efficient health care. This project, which is conducted in collaboration with the Radboud university medical center and other centers, will lead to different concrete health care products (screening instruments, patient profile charts, and e-Health modules with regard to adjustment problems and coping) that will be made broadly available to patients with kidney diseases (see also research program ‘e-Coach: Tailored cognitive-behavioral e-Health care for patients with chronic somatic conditions’).

Supervisors Leiden University: Prof.dr. Andrea Evers & Dr. Henriët van Middendorp.


4. Self-management in people with a mental disability

In the past couple of years, the demand for care for people with intellectual disabilities (ID) has greatly increased, and thereby also its related costs. People with ID seem to have increasing difficulties with leading an independent life within our growingly complex society. Nowadays, they also often have less of a social network to rely on, so they tend to ask for more professional support. Given these developments, it has become even more important to focus on what people with ID are able to do themselves and that they are taught more self-management skills. This could not only increase independence and self-reliance, but could also lead to improvements in behaviour, self-worth and overall quality of life. Additionally, it can provide people with ID with more opportunities to participate in society just as any other. 

In this PhD-study the focus is on the concept of independence in people with ID and how this can be improved.  It is performed in close collaboration with Raamwerk, a care organisation for people with ID. The effectiveness of different interventions aimed at improving self-management and independence in particular will be studied. One intervention is targeted at support staff, who receive a training on how to stimulate their clients to do more by themselves. In the other intervention, people with ID are offered a tailored goal-directed self-management training, providing them with a weekly training programme. Guided by support staff, they will work on self-selected training goals, such as improving cognitive and social skills or learning how to take care of themselves and their household. It will be evaluated whether the training is effective in improving  clients’ level of independence, behaviour, (self worth graag weghalen!) and quality of life. Furthermore, it is also investigated what the effect of the training is on the behaviour of support staff members.

Supervisor Leiden University: Prof.dr. Andrea Evers.
PhD student: Janice Sandjojo.


5. The role of patient participation in the development and evaluation of e-Health care developments

In this project, the aim is to map and evaluate the input of patient research partners in the development and evaluation of e-Health care interventions on the basis of user friendliness, patient satisfaction, and perceived effectiveness, in collaboration with the Radboud university medical center. (see also research program ‘e-Coach: Tailored cognitive-behavioral e-Health care for patients with chronic somatic conditions’

Supervisors Leiden University: Prof.dr. Andrea Evers & Dr. Henriët van Middendorp.
PhD student: Maaike Ferwerda.


This research program is part of the Research Group Psychoneurobiology of Health and Disease (www.andreaevers.nl

Connection with other research

This website uses cookies. More information