Health insurers, like Adelante and paediatricians in collaborating hospitals, have recognised the increase in the number of children whose lives are unsettled as a result of a chronic illness. The special needs school at Adelante is also witnessing this trend, as a result in a rise in the number of registrations for children with a chronic or long-term illness plus related problems. These kind of unsettled patterns occur because children and young people do not follow the advice of doctors. This lack of therapy compliance is caused by problems of acceptance resulting from illness or puberty (e.g. rebelling against one’s parents). These children/youngsters find it difficult to learn to live with their chronic illness independently. These problems become greater in the transitional phase between childhood and adulthood. In order to forestall these problems in children/youngsters with a chronic illness, other than DM-1, in 2011 health-care innovation funds were used to develop a modular treatment programme for youngsters with obesity between the ages of 12 and 18. The first group of children will have completed the programme in 2011. In 2012, the obesity programme was implemented for a 2nd and 3rd time among a group of 12 children with obesity The content of ObesiCare4U has been adapted (modular structure) and has been given a sound theoretical basis (ACT). Measurements will be taken (efficacy) and harmonised with Heideheuvel and health/care insurers to get a better insight into the effectiveness of the programme. The CIT4U programme, now known as Obesicare, will be offered to two groups of 14-16 youngsters in 2013 (the 1st group started in April, the 2nd will start in November). Contact has since been made with Merem (Heideheuvel), which offers a similar programme and is monitored and funded by the Dutch ministry of health. At the end of 2013 it will become clear as to what extent this initiative can be continued and tied in with the national programme via Merem.
Exercise through observation - MUMC+
Based on the idea that anxiety can play a crucial role in the perpetuation of a chronic pain syndrome, gradual in vivo exposure is used on patients with a pain-related fear. Gradual in vivo exposure means that the patient is given steady exposure to the ‘dreaded’ exercise. Clinical experience on a group of patients with chronic back pain has shown that fear of injury can lead to restrictions in daily life (patients often describe this as a “snapping”, “paralysis” or “the legs giving way”). Because anxieties amongst this group of patients show a major overlap, it is anticipated that group treatment might be more effective. Literature has made us aware of the fact that, as well as on the basis of our own experience, we can learn from verbally transmitted information and through the observation of others. The exposure treatment takes advantage of this, by means of an educational session (verbal information from the therapist) and by the therapist demonstrating the activities (patients observe). Observing a fellow patient perhaps carries greater validity and provides a stronger learning experience than observing the therapist. The aim of this project is to offer group therapy based on this observational learning from each other (fellow patients). In addition to quality care, other goals include cost savings and an increase in treatment capacity. 2012 will be largely devoted to developing the group treatment, training therapists, logistical organisation and the formulation of an implementation plan for a pilot (small-scale testing of therapy). At the end of 2012, the treatment will commence and patients will be tracked both individually and as a group, to gain a better insight into feasibility, patient satisfaction and effects. The treatment programme has been offered since April 2013 and adapted on the basis of experience (focus groups amongst patients and therapists, diaries). In September 2103, the 2 other treatment groups were started and evaluated. In addition, the outcomes (pain, activities, participation, anxieties and catastrophization) were identified again for all patients treated three and six months after the end of the treatment in order to evaluate whether the effects of the group therapy take root. If its effectiveness is proven, a proposal will be drafted in 2014 for implementing the group therapy in other Limburg-based treatment teams and possibly those at a nationwide level.
Implementation of oncology rehabilitation
There is an increasing recognition for the long-term effects of cancer treatment and as such, there is a growing demand for cancer rehabilitation. In the new guideline, ‘Oncological Rehabilitation’, attention focuses on developing specific rehabilitation modules which can be used with cancer patients. At Adelante, this has resulted in the drafting of an admission procedure and 6 oncological rehabilitation modules: condition, fatigue, work, cognitive functioning, melancholy and anxiety, nutrition. In principle, these modules have been written for groups, but can also be given individually. In 2012, the modules and admission procedure were submitted to a number of experts (colleagues with rehabilitation, the oncological centre and patients) and tested. By mid-2013, enough experience will have been gained with group therapy and the content of the diagnostic process (admission procedure) and treatment modules adapted. As such, the evaluation phase has now been completed. The final report has been discussed with the Adult Rehabilitation management team. The report provided the basis for deciding to offer oncological rehabilitation on a structural basis. Up until the end of the year, investment will continue in a plan to secure and develop the know-how gained in the field of oncological rehabilitation. Action will also be taken vis-à-vis the hospitals and Herstel & Balans (cancer rehabilitation programme) to develop a more clearly defined chain. Information for referrers and patients has already been developed.
In order to keep rehabilitation care affordable and effective (against the backdrop of an ageing population, an increase in age-related health-care problems, cutbacks) whilst retaining quality, new care concepts will have to be developed. With this in mind, the development and implementation of an internet-based rehabilitation portal (eHealth) is being proposed, by means of which patients can be supported in various ways in addressing their (rehabilitation) care issues. Via eHealth, this support may comprise interactive provision of information and/or education and making treatment protocols and/or training programmes available for patients, targeting the specific problems that they are experiencing. Of course, this process will be supervised by treatment experts. The expectation is that this might bring about more efficient (and therefore more cost-effective) forms of treatment for specific groups of patients (if necessary, following a basic training), in particular, those who are in a home-based setting from where they wish to/must receive therapy or after-care. In 2013 the project results will consist of the following: - an overview of (evidence-based) e-health applications in rehabilitation at an (inter)national level. - an insight into the preferred applications at a stakeholder level (patient, carer, financer, ICT, researcher, manager, community care). - definition of the “problem” that an eHealth solution may help solve (better, quicker, cheaper, accessible care?), - the setting-up and implementation of two pilots whereby eHealth will be introduced and trialled by Adelante (e.g. (skill) modules already developed, CoMoSS modules, ToCUEST module). On 4 June 2013, the results of a literature study into technological rehabilitation were presented to the management. A quickscan was likewise performed by BeBright identifying the extent to which Adelante is prepared for technological innovation in terms of ambition, strategy and positioning, organisational processes, HR and culture. One important conclusion was that, in principle, the ambition and development capacity were adequate but that the basis and the implementation capacity must be expanded. In late 2013, at least 1 low-threshold initiative will be worked out in greater detail aimed at technological innovation.
Hand orthosis for paraplegia
There is an increasing number of persons with incomplete paraplegia. For these people, the training of an arm or hand plays an important role in their rehabilitation because the degree of hand function will determine to a large part the eventual level of daily functioning. During the rehabilitation process, training for arm-hand skills is supported by an occupational therapist of physiotherapist. This is a labour-intensive job and the training situations in which this is offered differ widely. The patient is likewise dependent on a therapist with the consequence that he or she does not have the opportunity to practice outside these therapeutic sessions. Technological innovations (e.g. Haptic Master) do not enable training and stimulation of the hand. The application of simple techniques, such as the SAEBOFLEX® dynamic hand orthosis, which enables the patient to practice independently and intensively, is a promising new development. The SAEBOFLEX® appears to be an innovation that enables the hand to function with only limited assistance from an occupational therapist or a physiotherapist. With the aid of SAEBOFLEX®, combined with a training programme, the arm and hand can be rehabilitated at an early stage. Because the orthosis is genuinely able to support the use of a hand with a reduced function, patients with incomplete paraplegia are able to take advantage of intensive task-related training. In the CVA department at Adelante a pilot study has started using the dynamic SAEBOFLEX®. The results have been positive with respect to an increase in strength, speed and gripping for chronic CVA patients and sub-acute CVA patients. These findings correspond to a number of other similar pilot studies in the US and Germany. As far as use of the SAEBOFLEX® for people with paraplegia is concerned, no research has yet been carried out. To this end, this innovation project aims to optimise hand/arm skills training through integration of the SAEBOFLEX® within the existing arm and hand treatment programme. Persons with a cervical spinal cord injury are trained to widen the scope of possibilities available in their ADL. In addition, this therapy can improve the collaboration and expertise between therapists working with CVA, paraplegia and possibly ATO, with respect to arm-hand skills. All preparations to implement the “Saeboflex for paraplegia” treatment protocol were completed in March 2013 (including treatment protocol, therapy manuals, information and permission letters, Monique Wijnen trained). Treatment with the first patient has now been completed (June 2013) and the second patient is now undergoing treatment. It is expected that a third patient will be given treatment before the end of the year. This means that the project targets for 2013 will have been attained. The project will run for 2 years. In the second year, a further patient will receive treatment and data for a total of 4 patients will be analysed. Likewise, an assessment will be made as to whether the treatment protocol should be adjusted.
For children with Cerebral Palsy (CP), the motor cortex and the corticospinal tracts are often affected, with the result that there are irregularities in the motor system. However, arm-hand skills in children with CP can be trained. Studies in which intensive forms of therapy have been compared with ‘therapy as usual’ have been showing promising results. Intensive interventions are said to include intensive bimanual therapy (BIMT), as well as Constrained-Induced-Movement-Therapy (CIMT). The aim of BIMT is continued use of both arms during bimanual significant activities and CIMT the improvement of the use and quality of the most affected hand arm in order to bring about an improvement in arm and hand skills. Recent underlying scientific research on cats with a unilateral lesion has shown that most changes at brain level occur after bimanual targeted training in a significant context at as early as possible a stage after the lesion has occurred. This finding would suggest that the biggest gain in arm-hand skills can be achieved by stimulating children with a unilateral CP at the earliest possible stage – in infancy – in using both hands when carrying out skills which are age-specific and relate to a significant context. This insight formed the basis for this care innovation project. In 2013, the aim of the project is to set up a treatment protocol for children with a spastic unilateral hand disorder in the age group from 6 months to 3 years with the aim of encouraging – together with the parents - use of the affected hand in the home situation in order to bring about an improvement in the motor system. A precondition is a joined-up chain of diagnostics (paediatricians, neonatologists and child neurologists), treatment (therapists in community care and parents) and coaching (therapists in the centre). The Early Rehabilitation team for children has received effective information about the project and its objectives. After some initial resistance, a level of consensus has been achieved in the team. A draft MiniBimt treatment programme has been set up, potential participants (parents and therapists separately) have been selected for the focus groups (homogenous, with sufficient diversity in terms of experience and know-how of intensive, task-related and context-specific arm and hand skills training) and there is a plan in place (moderator, secretary, location, requirements, presentation about the mini-BIMT concept, topic list as basis for the talks). Focus group talks have been planned with parents and occupational therapists. It is expected that the objectives for 2013 (assessment of the feasibility of the protocol and needs assessment amongst occupational therapists and parents for training and support) will be attained so that the protocol can actually be tested in the home situation in 2014.
Parent module in the treatment of young people with chronic pain
Pain is a commonly occurring problem in adolescents. In the Netherlands, 2% of children between the ages of 0 and 18 years report chronic (= pain experienced over a period of 3 months or more). Between the ages 12 to 15, this percentage is even as high as 16.6%. Pain which is experienced in childhood can result in short or long-term physical and emotional problems in the life of young people and that of the family. It might, for example, lead to restrictions in daily activities (such as school or playing sport or games) and a reduced quality of life for the young person and for his/her family. Studies have shown that the treatment and supervision of children/youngsters with chronic pain in multidisciplinary rehabilitation is of added value when compared to mono-disciplinary treatment. In Limburg, a great deal of experience has now been gained with multidisciplinary pain treatment for both adults and children with chronic pain. One of the key areas of improvement in the current treatment of children is supervision of the ‘system’ (parents, family). The system is described as being an important context for understanding, identifying and providing support for chronic pain in children. For that reason it is essential that parents too are a key part of the treatment programme, so that they are able to offer their child optimum support in learning a new strategy for coping with pain. It goes without saying that parents are closely involved in current treatment programmes for their child, but they are not given special training. A parent programme has been developed specifically for this group at the Children’s Hospital in Boston in collaboration with Harvard University Boston. The aim of this health innovation project is to develop and to implement this parent programme in the MUMC+/Adelante. It concerns a group programme where 5 pairs of parents attend sessions of one and half hours each. The content of the parent programme has been described as planned. In addition, questionnaires have been drawn up for both parents and therapists to evaluate the practicability, feasibility, satisfaction and efficiency in respect of the parent programme. The first pilot for this parent programme was implemented in June 2013. The second pilot commenced in August and the third is planned in November.
Recreation and competitive sport isn’t something that should be taken for granted amongst children with a physical disability and/or behavioural problems. The experience of these children is that their local sports club isn’t equipped to offer adequate opportunities in terms of facilities and coaching. Not only that, these children often feel stigmatised and shunned by able-bodied persons. However, a number of organisations, such as Club Extra and Fitkids, have recently been offering adapted fitness and training regimes on a small scale. But this is still too small given the need for increased sport participation on the part of children with a disability in Limburg. Neither do these organisations offer any possibility for sportsmen and women, parents, professionals and trainers to meet, inspire, support, motivate and coach each other. Adelante aims to address this need through the SportMee project. The most important goal is for children and young people with a disability to be able to participate in sport, preferably in a sports club in their own milieu, by creating the conditions in their own surroundings. The project aims towards the following: a. to come up with a plan for SportMee that can be fleshed out inside and outside Adelante. b. to implement and evaluate this SportMee plan in the Heuvelland, Maastricht and Parkstad regions. The project period is two years. Afterwards, it should prove easily possible to roll out the plan at a provincial and national level. The project was started later than planned (3 in total, in April). A project team and a transparent project organisation has been set up. The project plan, which will offer a basis for the ongoing establishment and implementation of SportMee, has been formulated and approved. Furthermore, the following results have been attained: establishment of the SportMee team (blueprint of tasks and procedures), definition of coaching requirements for this team, contacts with sports clubs, local authorities and organisations (including Sportgezondheidscentrum Hoensbroek). A pilot project has been running this year to test the working methods of the sports team on a small scale (Heuvelland, Maastricht and Parkstad). Despite, the slow start, the project is on schedule.
Towards the streamlining of care provision in the community for patients with spinal-column-related disorders - MUMC+
The Spine Center project was set up in the MUMC+ in 2008. This is an inter-disciplinary collaboration project aimed at improving the care of patients with spinal-column-related disorders. Rehabilitation is one of the specialisms offered by the Spine Center. Over the last few years, more so than previously, there has been a tendency towards the adoption of a more conservative approach (e.g. rehabilitation) when it comes to treating some back disorders. Rehabilitation would appear to be effective (pain reduction) and cost-effective when compared to operative treatment. Rehabilitation care would therefore appear to play a key role in the care of patients with spinal-column-related disorders. This goal of this two-year project (2012-2013) is to develop and implement a group programme for patients with a spinal-column-related disorder in the DBC classification WPN2, based on the principles of the behavioural approach. The whole process will be evaluated in a structured way. During the 1st phase, the programme will be worked out in greater detail and tied in with care pathway 2 in the Spine Center. Care at a WPN2 level will then be worked out in detail and implemented for patients in care pathway 1 via satellite physiotherapy practices in community care. After the preconditions were created in 2012, 2013 will be used for testing transparent and verifiable treatment programmes (both in community as well as in rehabilitation programmes). A robust process and impact evaluation is part of this. In contrast to the original project timetable, it took longer to develop the content of the community care treatment programme WPN2 in conjunction with community care. This was mainly due to the fact that that the agreements regarding the collaboration and result monitoring (database) between community care and the azM hospital took longer than envisaged. In the meantime, a group of participating community care practices have been appointed to be trained in implementing the treatment programmes.
Walking project (Adelante loopt)
Adelante has had a great deal of experience treating walking-related problems amongst a variety of diagnosis groups. Mobility impairments have a considerable impact on the quality of life. People with a serious mobility disability have to make concessions when it come to their general well-being and social contacts. They are three times less happy and contented with life than people with no mobility problems. Within Adelante itself, there is a wide variation, both between the different diagnosis-related teams and within them, when it comes to use of measuring instruments, analysis of the care need, impact assessment and reporting. Neither is adequate use made of gait analysis. This analysis helps in the needs assessment, training and evaluation of the treatment provided and, as such, offers added value in the development and implementation of a methodology surrounding patient-centred needs analysis and needs consultation. In order to minimise this variation, a care innovation project has been set up. The aims of the project are twofold:
- to improve and to standardise the internal process, or the needs analysis, within Adelante with regard to walking-related problems, independently of the diagnosis. To this end, all therapists involved will analyse simple gait problems in an unambiguous fashion and more complex analyses will be made with recommendations, where necessary by a number of experts, but also by Adelante staff. This will support the primary process.
- Setting up a surgery for persons with walking-related problems as part of an out-patients centre, to where patients can be referred from community care, general care or hospital care. The target group for this surgery are all patients who experience problems with walking, independent of the underlying diagnosis.
The stepped-care principle will be implemented within the out-patients clinic: where required, a clearly defined follow-up procedure will be proposed (in the form of training, an intervention, assistive devices or a combination of these). Wherever possible, this will remain a (one-off) recommendation. A side-effect of this will be the optimisation of the collaboration between the motion laboratory and the adult rehabilitation treatment teams at Adelante. This must lead to the optimum use of instrumental gait analysis within the diagnostic and the therapeutic processes. Secondary priorities are:
- coordination between Adelante and UM / MUMC about protocols and referral possibilities in the event of highly complex problems (which the lab being developed at Adelante will be unable to cope with, for example, by means of EMG readings).
- to initiate a collaboration with orthopaedic surgeons at Atrium, where surgical after-treatment can be provided
- more efficient collaboration within the care chain for the elderly (GPs and physiotherapists in Oostelijk Zuid Limburg, SGL etc.)
- cooperation between various Adelante sites in the field of walking (Adelante children, Atrium MC, MUMC+)
In mid-August 2013, the draft working procedure was drawn up (standardisation of the internal process, or the needs analysis) and submitted for the approval of the physiotherapy department. The proposed gait analysis system, CMAX, was tested for its feasibility at Adelante in June and July. The test showed that there were still too many technical problems, as a result of which it was decided not to purchase the system for the time being. The supplier of CMAX has indicated that these problems will be rectified as soon as possible (by late 2013). Nevertheless, the search has been initiated for a different gait analysis system if it turns out that the problems with the CMAX cannot be rectified. What this does mean however, is that plans for setting-up an out-patients surgery for persons with walking-related problems have been delayed. The expectation is that this lost ground can be made up as soon as gait analysis is possible.