Participation and mental well-being of mothers of home-living patients with spinal muscular atrophy.

Proximal spinal muscular atrophy (SMA) causes severe physical limitations but also has a major impact on the lives of parents. The aim of this study was to investigate participation and mental well-being (burden, emotional distress and satisfaction with participation) of parents of home-living patients with SMA. Caregiver burden was assessed with the Caregiver Strain Index, emotional distress with the Hospital Anxiety and Depression Scale and satisfaction with participation with the Utrecht Scale for Evaluation of Rehabilitation-Participation. Because the majority of parents were mothers of home-living SMA patients (76%), further analyses were restricted to mothers. Seventy-seven percent of mothers of patients with SMA had paid work. A substantial proportion of mothers (76%) perceived high caregiver burden. Burden, emotional distress and satisfaction with participation were comparable between mothers of children and mothers of adults with SMA. Caregivers' participation in leisure activities was significantly related to their perceived level of caregiver burden, emotional distress and satisfaction with participation. Mothers engaging in more social and leisure activities reported lower emotional distress and caregiver burden. Considering the high level of burden attention should be paid to mental well-being of primary caregivers of patients with SMA. Caregivers should be motivated to keep participating in social/leisure activities.

There is no place like @home!: The value of home consultations in paediatric rehabilitation.

BACKGROUND: Family-centred services (FCS) is widely regarded as the best practice approach in early interventions. Creating a therapeutic environment, which also stimulates collaboration between parents and service professionals, is a way to conform to the principles of FCS. The present paper describes the project entitled @home, involving the implementation of home consultations by a specialized team working with children aged 0-5 years at our rehabilitation centre in the Netherlands. The objectives of this article are to (a) describe the development and implementation of home consultations as part of regular care and (b) share the experiences of parents and service providers with home consultations. METHOD: The implementation process was divided into 3 steps: (1) interviewing experts, (2) adjusting current rehabilitation trajectories, and (3) service providers offering consultations to children at home. The experiences with the home consultations were immediately incorporated in the system, making the implementation an iterative process. RESULTS: In 82% of the 133 home conducted consultations, the service professionals reported that it was more valuable to offer home consultations than seeing the child at the rehabilitation centre. The semistructured interviews revealed that parents and service providers found that they received and provided more tailored advice, perceived a more equal partnership between service professionals and parents, and reported that the home consultations provided a good natural therapeutic environment where a child can be itself and where the child performs best. CONCLUSION: By using the @home system based on the 3 service models, home consultations are now part of the regular paediatric rehabilitation system at our rehabilitation centre.

Co-creation of a digital tool for the empowerment of parents of children with physical disabilities.

PLAIN ENGLISH SUMMARY: Parents of children with physical disabilities do a lot to support their child in daily life. In doing this they are faced with many challenges. These parents have a wide range of unmet needs, especially for information, on different topics. It is sometimes hard for them to get the right information at the right moment, and to ask the right questions to physicians and other healthcare professionals. In order to develop a digital tool to help parents formulate questions and find information, we thought it would be crucial to work together in a process of co-creation with parents, researchers, IT-specialists and healthcare professionals. In close collaboration with them we developed a tool that aims to help parents ask questions, find information and take a more leading role in consultations with healthcare professionals, called the WWW-roadmap (WWW-wijzer in Dutch).In two groups of parents (one group with and one group without experience of using the tool), we will study the effects of using this tool, on consultations with physicians. We expect that using the tool will result in better empowerment, satisfaction and family-centred care. BACKGROUND: Parents of children with physical disabilities do much to support their child in daily life. In doing so, they are faced with many challenges. These parents have a wide range of unmet needs, especially for information, on various topics. Getting timely and reliable information is very difficult for parents, whereas being informed is a major requirement for the process of empowerment and shared decision-making. This paper describes the development of a digital tool to support parents in this process. During its development, working together with parents was crucial to address relevant topics and design a user-centred intervention. METHODS: In co-creation with parents, healthcare professionals, IT-professionals and researchers, a digital tool was developed, the 'WWW-roadmap' ['WWW-wijzer' in Dutch]. This digital tool aims to enable parents to explore their questions (What do I want to know?), help in their search for information (Where can I find the information I need), and refer to appropriate professionals (Who can assist me further?).During the process, we got extensive feedback from a parent panel consisting of parents of children with physical disabilities, enabling us to create the tool 'with' rather than 'for' them. This led to a user-friendly and problem-driven tool. DISCUSSION: The WWW-roadmap can function as a tool to help parents formulate their questions, search for information and thus prepare for consultations with healthcare professionals, and to facilitate parental empowerment and shared-decision making by parent and professional. Effects of using the WWW-roadmap on consultations with professionals will be studied in the future.

Family-centred service: differences in what parents of children with cerebral palsy rate important.

BACKGROUND: A family-centred approach to services of children with disabilities is widely accepted as the foundational approach to service delivery in paediatric health care. The 56 items of the Measure of Processes of Care questionnaire (MPOC-56) all reflect elements of family-centred service. In this study, we investigated which elements of family-centred service are rated important by parents of children with cerebral palsy by adding a question on importance to each item of the MPOC-56 (MPOC-56-I). METHODS: In total, 175 parents of children with cerebral palsy completed the MPOC-56-I. For each MPOC item, parents were asked to rate the importance on a 5-point scale ranging from 0 (not important at all) up to and including 4 (very important). We used Spearman's rank correlation coefficient to further explore the variation in parents' importance ratings. RESULTS: Parents' importance ratings of the MPOC-56 items varied. The percentage of parents rating an item important (importance rating 3 or 4) varied between 43.8% and 96.8%. The percentage of parents rating an item unimportant (rating 0 or 1) varied between 0.0% and 20.3%, and the percentage of parents rating an item neutral (rating 2) varied between 3.0% and 36.0%. Most diverse importance ratings were found for five items concerning the provision of general information. Three correlations between these items and child and parent characteristics were found. Six items were rated important by almost all (≥95%) parents. These items concern elements of specific information about the child, co-ordinated and comprehensive care for child and family and enabling and partnership. CONCLUSIONS: Parents rate the importance of family-centred services for their situation in various ways. These findings endorse that family-centred services should recognize the uniqueness of families and should be tailored to what parents find important.

Information seeking by parents of children with physical disabilities: An exploratory qualitative study.

BACKGROUND: Evidence suggests that parents of children with disabilities feel that not all their information needs are being met, but it remains unclear how parents try to fill these information gaps. AIMS: The aim of this study is to describe how parents of children with physical disabilities search for and evaluate information. METHODS: Qualitative semi-structured interviews were conducted with 15 parents of children with a disability, aged 1.5-21 years. Data were analysed using thematic analysis. RESULTS: There was much variation in information needs between parents. Parents used different sources, depending on the type of information needed, the most important being healthcare professionals, peers, and websites. Peers played an important role in information provision and were the preferred source of experience-based knowledge and support. The Internet is a widely used medium to search for information and to access various sources. There was a general preference for closed Internet communities for peer contact. Information was commonly evaluated by comparing sources. CONCLUSIONS AND IMPLICATIONS: Parents use different sources for different information needs, and evaluate information by comparing them. Healthcare professionals and parents can support each other in locating and evaluating information including experience-based knowledge. Healthcare professionals should guide parents in their search for information and experience-based knowledge from peers.

Parents' perceptions of the services provided to children with cerebral palsy in the transition from preschool rehabilitation to school-based services.

AIM: To describe the course of parents' perceptions of the family centredness of rehabilitation services provided to their children with cerebral palsy (CP) before and after the transition from preschool to school-based services. BACKGROUND: Parents of 59 children with CP aged 2.5 to 4.5 years filled in the 56-item Measure of Processes of Care (MPOC-56) on three occasions pre (2) and post (1) transition to school-based services. Friedman tests were used to describe changes in parents' perceptions over time. Mann-Whitney U tests were used to describe differences in course of parents' perceptions between regular school and special school or day care. RESULTS: Parents' perceptions of preschool services were stable between the ages of 2.5 and 3.5 years, with a decline after transition on four of the five domains of the MPOC (P < 0.05). The domain providing general information was scored lowest (median at baseline 3.56, IQR 2.39) compared with the four other MPOC domains, but remained stable over time. No differences in course of parental perceptions were found for school type. CONCLUSION: The transition from preschool to school-based services for children with CP is associated with a decrease in parents' perception of family centredness independent of the type of school. The transition in services has a negative impact on perceived family-centred practices.

[Views of psychiatrists on patients' responsibility for their own health. A qualitative study]. / Denkbeelden van psychiaters over de verantwoordelijkheid van patiënten voor hun gezondheid; een kwalitatief onderzoek.

BACKGROUND: In the Netherlands patients are increasingly being required to take responsibility for their own their health. However, an important problem not yet resolved is whether psychiatric patients are able or well enough to shoulder this responsibility. AIM: To explore the normative views of psychiatrists concerning their responsibility of their patients' health. METHOD: We performed a qualitative research in which 15 psychiatrists were interviewed with the help of a list of topics. The verbatim accounts of the interviews were analysed and interpreted by two researchers. RESULTS: Psychiatrists differed in their views on the responsibility of patients for their own health. Some psychiatrists defined patient responsibility as a personal quality or disposition and regarded patients as being in principle responsible; others considered patient responsibility to be a construct or result of the therapeutic relationship. These two groups had different views about the moments and the ways in which patient responsibility becomes problematical. In addition, they had opposing views on current developments in government policies. CONCLUSION: Psychiatrists differ in their interpretation of patient responsibility. This means they differ not only in their views on government policy but also probably in the attitudes they adopt in their daily practice. These differing attitudes to patient responsibility need to be looked at critically because they have a bearing on the observance of ethical norms and on the need to respect patients' autonomy.

Canadian integrative oncology research priorities: results of a consensus-building process.

BACKGROUND: In Canada, many diverse models of integrative oncology care have emerged in response to the growing number of cancer patients who combine complementary therapies with their conventional medical treatments. The increasing interest in integrative oncology emphasizes the need to engage stakeholders and to work toward consensus on research priorities and a collaborative research agenda. The Integrative Canadian Oncology Research Initiative initiated a consensus-building process to meet that need and to develop an action plan that will implement a Canadian research agenda. METHODS: A two-day consensus workshop was held after completion of a Delphi survey and stakeholder interviews. RESULTS: FIVE INTERRELATED PRIORITY RESEARCH AREAS WERE IDENTIFIED AS THE FOUNDATION FOR A CANADIAN RESEARCH AGENDA: EffectivenessSafetyResource and health services utilizationKnowledge translationDeveloping integrative oncology models Research is needed within each priority area from a range of different perspectives (for example, patient, practitioner, health system) and in a way that reflects a continuum of integration from the addition of a single complementary intervention within conventional cancer care to systemic change. Strategies to implement a Canadian integrative oncology research agenda were identified, and working groups are actively developing projects in line with those strategic areas. Of note is the intention to develop a national network for integrative oncology research and knowledge translation. CONCLUSIONS: The identified research priorities reflect the needs and perspectives of a spectrum of integrative oncology stakeholders. Ongoing stakeholder consultation, including engagement from new stakeholders, is needed to ensure appropriate uptake and implementation of a Canadian research agenda.

Preventing hospital admissions by reviewing medication (PHARM) in primary care: an open controlled study in an elderly population.

WHAT IS KNOWN AND OBJECTIVE: Limited and conflicting evidence exists on the effect of a multicomponent pharmaceutical care intervention (i.e. medication review, involving collaboration between general practitioners (GPs), pharmacists and patients) on medication-related hospitalizations, survival, adverse drug events (ADEs) and quality of life. We aimed to investigate the effect of a multicomponent pharmaceutical care intervention on these outcomes. METHODS: An open controlled multicentre study was conducted within primary care settings. Patients with a high risk on medication-related hospitalizations based on old age, use of five or more medicines, non-adherence and type of medication used were included. The intervention consisted of a patient interview, a review of the pharmacotherapy and the execution and follow-up evaluation of a pharmaceutical care plan. The patient's own pharmacist and GP carried out the intervention. The control group received usual care and was cared for by a GP other than the intervention GP. The primary outcome of the study was the frequency of hospital admissions related to medication within the study period of 12 months for each patient. Secondary outcomes were survival, quality of life and ADEs. RESULTS AND DISCUSSION: 364 intervention and 310 control patients were included. Less medication-related hospital admissions were found in the intervention group (n = 6; 1·6%) than in the control group (n = 10; 3·2%) but the overall effect was not statistically significant (hazard ratio (HR) 0·50, 95% confidence interval (CI) 0·12-1·59). The secondary outcomes were not statistically significantly different either. The study was underpowered, which may explain the negative results. A post hoc analysis showed that the effect of the intervention was statistically significant for patients with five diseases or more: five diseases, HR 0·28 (95% bootstrap CI: 0·056-0·73) and eight diseases, HR 0·11 (95% CI: 0·013-0·34). WHAT IS NEW AND CONCLUSION: A multicomponent pharmaceutical care intervention does not prevent medication-related hospital admissions. Whether this is true for such interventions in general is unknown, because the PHARM study was underpowered. The intervention may significantly reduce medication-related hospitalizations in patients with five or more comorbidities, but this is only based on a post hoc analysis and thus needs confirmation in large controlled trials.

The course of health-related quality of life of preschool children with cerebral palsy.

PURPOSE: The purpose of this paper is to describe the course of the health-related quality of life (HR-QoL) of children with cerebral palsy (CP) between the ages of 2.5 and 4.5 years, at both group and individual level. We also examined whether CP characteristics are helpful in understanding which children show a decrease in HR-QoL. METHODS: HR-QoL of 72 children with CP was measured using the TNO-AZL Preschool children Quality of Life (TAPQOL) questionnaire at the ages of 2.5, 3.5 and 4.5 years. The course of HR-QoL was compared between groups with different CP characteristics. RESULTS: Median scores for 10 of the 12 domains of the TAPQOL were found to be stable between ages 2.5 and 4.5 years. However, individual children showed great changes in HR-QoL at these ages, for all domains. A larger proportion of children with less severe CP showed a decrease in HR-QoL for the behaviour problems domain (p = 0.02), and a larger proportion of unilaterally affected children showed a decrease in HR-QoL regarding the anxiety (p < 0.001) and social functioning (p = 0.01) domains. CONCLUSIONS: Although the median HR-QoL of children with CP is generally stable at these ages, much variation in the course of HR-QoL exists between individual children. There is no clear association between motor functioning or limb distribution and a decrease in HR-QoL.

Understanding coronary artery disease patients' decisions regarding the use of chelation therapy for coronary artery disease: descriptive decision modeling.

BACKGROUND: A considerable number of patients receive chelation therapy to treat their coronary artery disease. However, there is no current empirical evidence to support its use. AIM: To better understand patient's decision-making processes regarding the use of chelation therapy as a treatment for coronary artery disease. METHODS: Based on qualitative interviews with 32 coronary artery disease patients, a taxonomy of decision-related issues, hierarchical decision-model, and survey based on the model were developed. The model was then pilot tested with another group of 30 patients and revised accordingly. The final model was tested with another group of 167 patients (27 current users, 72 previous users, and 68 never users of chelation therapy). The primary examination of the model was to determine the degree to which it successfully identified people who fell within each behavioral group. This was done by dividing the total number of successes by the total number of cases on all paths (or questions in the questionnaire). RESULTS: The most important elements in the decision to use or not use chelation therapy were: previous experience with or learning about chelation therapy, openness to alternative treatments, satisfaction with current level of (traditional) care, physician opinion regarding chelation therapy, costs associated with chelation therapy, perceived access to chelation therapy provider, current state of health (good or bad), and wanting to do 'all one can' for heart health. When tested, the ability of the model to predict the appropriate outcome was nearly 93%. The most salient junctures in the model that led participants to different behavioral outcomes were: considering using non-traditional treatments; perceptions regarding potential risks and benefits; cost; and believing that using chelation therapy was 'doing all that they can' to help their heart health. CONCLUSIONS: Descriptive decision-modeling is a useful method to depict cardiac patients' decision-making concerning the use of chelation therapy. It can also assist healthcare providers and policy makers in directing interventions and policy aimed at enhancing the use of evidence-based therapies for cardiac patients.

Use of Complementary and Alternative Medicine among People with Multiple Sclerosis in the Nordic Countries.

Aims. The aim of the study was to describe and compare (1) the types and prevalence of complementary and alternative medicine (CAM) treatments used among individuals with multiple sclerosis (MS) in the Nordic countries; (2) the types of conventional treatments besides disease-modifying medicine for MS that were used in combination with CAM treatments; (3) the types of symptoms/health issues addressed by use of CAM treatments. Methods. An internet-based questionnaire was used to collect data from 6455 members of the five Nordic MS societies. The response rates varied from 50.9% in Norway to 61.5% in Iceland. Results. A large range of CAM treatments were reported to be in use in all five Nordic countries. Supplements of vitamins and minerals, supplements of oils, special diet, acupuncture, and herbal medicine were among the CAM treatment modalities most commonly used. The prevalence of the overall use of CAM treatments within the last twelve months varied from 46.0% in Sweden to 58.9% in Iceland. CAM treatments were most often used in combination with conventional treatments. The conventional treatments that were most often combined with CAM treatment were prescription medication, physical therapy, and over-the-counter (OTC) medications. The proportion of CAM users who reported exclusive use of CAM (defined as use of no conventional treatments besides disease-modifying medicine for MS) varied from 9.5% in Finland to 18.4% in Norway. In all five Nordic countries, CAM treatments were most commonly used for nonspecific/preventative purposes such as strengthening the body in general, improving the body's muscle strength, and improving well-being. CAM treatments were less often used for the purpose of improving specific symptoms such as body pain, problems with balance, and fatigue/lack of energy. Conclusions. A large range of CAM treatments were used by individuals with MS in all Nordic countries. The most commonly reported rationale for CAM treatment use focused on improving the general state of health. The overall pattern of CAM treatment use was similar across the five countries.

CAM information online: an audit of Internet information on the "Bill Henderson Protocol".

OBJECTIVES: The objective of this study was to identify and describe online information about a complementary and alternative dietary intervention for cancer treatment, the Bill Henderson Protocol. DESIGN: A scoping method was applied to the Internet to identify information available on the Bill Henderson Protocol. Using the advanced search option, "Google," "Yahoo" and "Alta Vista" were used to search for the phrase "Bill Henderson Protocol." MAIN OUTCOMES: Information was found on 79 web pages. Most of the information took the form of personal commentaries and anecdotes, and included both positive and negative reports. Information was frequently found about different components of the protocol, but only one webpage provided complete details on what the regimen entails. Frequently, links were provided to Bill Henderson's website, where further protocol information could be found, including the opportunity to purchase his book. No empirical evidence was found. CONCLUSIONS: This study summarized information available on the Internet for the Bill Henderson Protocol an alternative dietary intervention intended to be used by people with cancer as a potentially curative treatment. The results of this study illustrate that new treatment interventions can be proposed, disseminated, discussed and used by consumers in advance of definitive evidence regarding efficacy and safety. This has implications for physician-patient interactions.

Complementary therapies for cancer patients: assessing information use and needs.

Many cancer patients seek complementary therapies (CTs) for cancer management; however, relatively little is known about patients' CT information seeking behaviour. Therefore, we assessed: 1) cancer patients' use of the types and sources of CT information; 2) their information preferences; and 3) their understanding of the phrase "scientific evidence or proof that a therapy works." We collected data from 404 patients attending the Tom Baker Cancer Centre (TBCC) in Calgary and 303 patients calling the Cancer Information Service (CIS) helpline. In most cases, patients wanted information on the safety of CTs, how CTs work and their potential side effects. Physicians and conventional cancer centres were the most desired sources of CT information, but relatively few patients obtained information via these sources. Although patients were aware of the meaning of scientific evidence, they often used information based on non-scientific evidence, such as patient testimonials. The creation of a supportive care environment in conventional cancer treatment centres, by providing CT information, may help address cancer patients' concerns and alleviate some of the stress that may have been caused by the cancer diagnosis.

Restrictions in social participation of young adults with spina bifida.

PURPOSE: To determine participation restrictions of young adults with spina bifida (SB) in relation to health condition and activity limitations. METHOD: A total of 179 persons aged 16-25 years and born with SB participated in a cross-sectional study. The main outcome on four domains of participation (independent living, employment, education and partner relationships) was assessed using a structured questionnaire. RESULTS: At the mean age of 21 years only 16% were living independently, more than one-third of the participants went to special secondary education, 53% of those who finished education did not have a regular job and 71% did not have a partner. Health condition variables (type of SB, hydrocephalus and level of lesion) and to a lesser extent activity limitations (wheelchair dependence and incontinence) were significant determinants for having participation restrictions. Perceived hindrances in participation included long-distance transportation (19-36%), accessibility (10-42%), physical impairments (22-40%), emotional barriers (20-32%) and financial limits (3-17%). More severe SB, defined as hydrocephalus, high level of lesion and wheelchair dependence, was related with more experienced hindrances due to long-distance transportation accessibility of buildings. CONCLUSIONS: Many young adults with spina bifida experience participation restrictions. Severity of SB was negatively related to participation. Social integration should be a major focus in the professional guidance of youngsters with physical disabilities.

Declining conventional cancer treatment and using complementary and alternative medicine: a problem or a challenge?

BACKGROUND: Several studies have shown that a small but significant percentage of cancer patients decline one or more conventional cancer treatments and use complementary and alternative medicine (CAM) instead. OBJECTIVES: Here, drawing on the literature and on our own ongoing research, we describe why cancer patients decide to decline conventional cancer treatments, who those patients are, and the response by physicians to patients who make such decisions. RESULTS: Poor doctor-patient communication, the emotional impact of the cancer diagnosis, perceived severity of conventional treatment side effects, a high need for decision-making control, and strong beliefs in holistic healing appear to affect the decision by patients to decline some or all conventional cancer treatments. Many patients indicate that they value ongoing follow-up care from their oncologists provided that the oncologists respect their beliefs. Patients declining conventional treatments have a strong sense of internal control and prefer to make the final treatment decisions after considering the opinions of their doctors. Few studies have looked at the response by physicians to patients making such a decision. Where research has been done, it found that a tendency by doctors to dichotomize patient decisions as rational or irrational may interfere with the ability of the doctors to respond with sensitivity and understanding. CONCLUSIONS: Declining conventional treatment is not necessarily an indicator of distrust of the medical system, but rather a reflection of many personal factors. Accepting and respecting such decisions may be instrumental in "keeping the door open."

Principles to guide integrative oncology and the development of an evidence base.

BACKGROUND: Integrative oncology uses both conventional and complementary medicine to meet the needs of individual patients and to focus on the whole person. The core principles of integrative oncology include individualization, holism, dynamism, synergism, and collaboration, but the nature of the evidence to guide the development of integrative oncology has been given little attention. OBJECTIVES: To discuss the need for evidence to support the integration of complementary therapies for integrative oncology care. To emphasize that the evidence base must be valid and respect the underlying principles of individual complementary therapies and integrative oncology practice. To suggest ways to begin developing the evidence base. REVIEW AND DISCUSSION: Although the evidence for safety and efficacy seems paramount for supporting the integration of an individual complementary therapy into mainstream cancer care, the need for evidence to support the overall practice of integrative oncology has to be considered as well. We argue that developing an evidence base for integrative oncology requires a contextual and comprehensive research approach that assesses a range of outcomes over a suitable period of time that the patient and the patient's family, in addition to the health care providers, deem important. CONCLUSION: A whole-systems framework to the development of the evidence base for integrative oncology can guide the development of evidence that respects the complex nature of many complementary and integrative practices and their underlying principles of care delivery.

Talking to cancer patients about complementary therapies: is it the physician's responsibility?

BACKGROUND: To ensure the safety and effectiveness of cancer management, it is important for physicians treating cancer patients to know whether their patients are using complementary and alternative medicine (CAM) and if so, why. OBJECTIVE: Here, we discuss the ethical and legal obligations of physicians to discuss cam use in an oncology setting, and we provide practical advice on how patient-provider communication about cam can be improved. RESULTS: Physicians have both ethical and legal obligations to their patients, including the obligation to respect patient autonomy. This latter obligation extends to use of CAM by patients and needs to be addressed beginning early in the patient-provider relationship. Because lack of education in this field and lack of time during patient consultations are barriers to talking with patients about cam, we provide resources to facilitate such discussions. These resources include suggestions on how to discuss the topic of cam and a wide range of information sources. CONCLUSIONS: Discussing CAM with patients is the physician's responsibility, and such discussion will facilitate evidence-based, patient-centred cancer care.

Work participation among young adults with spina bifida in the Netherlands.

The aim of this study was to: (1) assess work participation among young adults with spina bifida, (2) identify problems perceived in finding employment, and (3) examine which determinants are related to work participation. This cross-sectional study was a follow-up study to the Adolescents with SPina bifida In the Netherlands (ASPINE) study. Data regarding work participation and problems finding employment were collected with questionnaire developed by the authors. Data on disease characteristics were taken from the ASPINE database. Responses of 136 participants were analyzed (77 females, 59 males; mean age 26 years 1 month [SD 3y1mo], range 21-32y). Twenty participants had spina bifida occulta and 116 had spina bifida aperta, 96 of whom also had hydrocephalus. Work participation rate was 62.5%, of which 22.4% was in a sheltered workplace. Significant determinants of having paid work for at least 1 hour a week were: level of education, level of lesion, hydrocephalus, IQ, functional independence, and ambulation. Significant determinants of full-time employment were the same, plus sex and type of spina bifida. In a multivariate backward logistic regression analysis, however, only level of education remained a significant predictor of work participation. Sex, level of education, and self-care independence were significant predictors of full-time employment. This study shows the importance of educational support and self-care independence training for children with spina bifida.

Life satisfaction of young adults with spina bifida.

This study concerns life satisfaction and its determinants in Dutch young adults with spina bifida (SB). Data on life satisfaction (Life Satisfaction Questionnaire [LiSat-9]) were related to hydrocephalus, lesion level, disabilities, and demographic variables. In total, 179 young adults with SB participated (41% male, age range 16-25y; 79% SB aperta, 67% hydrocephalus [HC], 39% wheelchair-dependent). Most were satisfied with their life as a whole (24% dissatisfied). No difference was found from a population reference group (28% dissatisfied). Highest proportions of dissatisfaction were found for financial situation (44%), partnership relations (49%), and sex life (55%). Least dissatisfaction was found for contact with friends (17%) and families (15%). Young adults with SB and HC were more satisfied with their financial situation and family life but were less satisfied with self-care ability and partnership relations than those without HC and the reference group. However, except for self-care ability, relationships between life satisfaction and having SB were weak. In conclusion, self-care ability and partnership relations were rated least favourable and may need more attention from care providers. Overall, SB does not seem to be an important determinant of life satisfaction.