Towards criteria and symptoms of constipation in people with severe or profound intellectual and multiple disabilities: A Delphi study.

Background: Chronic constipation is common in people with intellectual disabilities, and seems to be highly prevalent in people with severe or profound intellectual and multiple disabilities (SPIMD). However, there is no current widely accepted definition for the constipation experienced by these individuals. Aim: This Delphi study aims to compile a list of operationalized criteria and symptoms of constipation in people with SPIMD based on practical experiences of and consensus between experts supporting them. Methods: A two-round Delphi study with an intermediate evaluation and analyses was conducted. Parents and relatives of persons with SPIMD and support professionals were included. The panel answered statements and open questions about symptoms and criteria of constipation. They were also requested to provide their opinion about classifying criteria and symptoms into domains. Answers to statements were analysed separately after both rounds with regard to consensus rate and displayed qualitatively; answers to open questions were analysed deductively. Results: In the first Delphi round (n = 47), consensus was achieved on criteria within the domains 'Defecation' and 'Physical features', that were assigned to broader categories. Symptoms retrieved within the domain 'Behavioural/Emotional' were brought back to the panel as statements. After the second Delphi round (n = 38), consensus was reached on questions about domains, and for eight criteria (domain 'Defecation' n = 5; domain 'Physical features n = 3). Within the domain 'Behavioural/Emotional', consensus was achieved for five symptoms. Criteria and symptoms with consensus >70% were considered 'generic' and <70% as 'personal'. Symptoms mentioned in the text boxes were used to operationalize categories. Discussion and conclusion: It was possible to compile a list of generic criteria related to the domains 'Defecation' (n = 5) and 'Physical features' (n = 3) supplemented with generic symptoms related to the domain 'Behavioural/Emotional' (n = 5). We propose using both generic as well as personal criteria and symptoms resulting in a personal profile for an individual with SPIMD. Based on the current results, we recommend follow-up research to develop a screening tool to be used by relatives and professional caregivers, and a definition of constipation. This may support reciprocal collaboration and lead to timely identification of constipation in people with SPIMD.

Implementation of a program to support direct support professionals to promote a healthy lifestyle for people with moderate to profound intellectual disabilities.

BACKGROUND: There is a lack of theory-based interventions for direct support professionals (DSPs) to support a healthy lifestyle for people with moderate to profound intellectual disabilities (ID) despite their major role in this. This study aims to evaluate the preparation, implementation, and preliminary outcomes of a theory-based training and education program for DSPs to learn how to support these individuals. METHODS: The program consisting of e-learning, three in-person sessions, and three assignments was implemented. The implementation process was evaluated with a mixed method design with the following components: preparation phase, implementation phase, and the outcomes. These components were measured with project notes, questionnaires, interviews, reflections, assignments, food diaries, Actigraph/Actiwatch, and an inventory of daily activities. RESULTS: Regarding the preparation phase, enough potential participants met the inclusion criteria and the time to recruit the participants was 9 months. The program was implemented in four (residential) facilities and involved individuals with moderate to profound ID (n = 24) and DSPs (n = 32). The e-learning was completed by 81% of the DSPs, 72-88% attended the in-person sessions, and 34-47% completed the assignments. Overall, the fidelity of the program was good. DSPs would recommend the program, although they were either negative or positive about the time investment. Mutual agreement on expectations were important for the acceptability and suitability of the program. For the outcomes, the goals of the program were achieved, and the attitudes of DSPs towards a healthy lifestyle were improved after 3 months of the program (nutrition: p = < 0.01; physical activity: p = 0.04). A statistically significant improvement was found for food intake of people with ID (p = 0.047); for physical activity, no statistically significant differences were determined. CONCLUSIONS: The theory-based program consisting of a training and education section for DSPs to support a healthy lifestyle for people with moderate to profound ID was feasible to implement and, despite some barriers regarding time capacity and mutual expectations, it delivered positive changes in both persons with moderate to profound ID and DSPs. Thus, the program is a promising intervention to support DSPs.

Variables related to the quality of life of families that have a child with severe to profound intellectual disabilities: A systematic review.

BACKGROUND: Family quality of life (FQoL) of families that have a child with severe to profound intellectual disabilities (SPID) is an important and emerging concept, however, related variables are inconclusive. AIM: To gain a better understanding of variables related to the FQoL of families that have a child with SPID, variables related to the FQoL of families that have a child with intellectual disabilities (ID) were systematically reviewed. METHODS AND PROCEDURES: A search strategy was performed in five databases. Critical appraisal tools were employed to evaluate the quality of both quantitative and qualitative studies. Data extraction and synthesis occurred to establish general study characteristics, variables, and theoretical concepts. Variables were categorised into four key concepts of the FQoL: systemic concepts, performance concepts, family-unit concepts and individual-member concepts. OUTCOMES AND RESULTS: A total of 40 studies were retrieved with 98 variables. Quality scores ranged from 7 to 13 (quantitative) and 5 to 13 (qualitative) out of 13 and 14 points, respectively. Five out of the 40 studies (13%) focused on individuals with SPID. Variables related positively or negatively to the FQoL, and were categorised within systemic concepts (n = 3); performance concepts (n = 11); family-unit concepts (n = 26); and individual-member concepts (n = 58). CONCLUSIONS AND IMPLICATIONS: Several variables were found to be (inter)related to the FQoL of families that have a child with ID. A contrasting picture emerged regarding the impact of a disability in relation to transitional phases. However, studies which include families of children with SPID were minimal, therefore, it remained ambiguous to what extent the identified variables apply to these families.

Physical-activity support for people with intellectual disabilities: development of a tool to measure behavioural determinants in direct support professionals.

BACKGROUND: Physical-activity approaches for people with intellectual disabilities (ID) are more likely to be effective and sustainable if they also target direct support professionals' behaviour. However, no tools to measure the behavioural determinants for direct support professionals are available as of yet. This study aims to construct a self-report tool to measure direct support professionals' behavioural determinants in physical-activity support for people with ID and to analyse its psychometric properties. METHODS: The tools' sub-scales and items corresponded with a proposed conceptual model. A pilot study was carried out to investigate and improve content validity. Construct validity and measurement precision were examined using item response theory models with data from a convenience sample of 247 direct support professionals in the support of people with ID. RESULTS: Results supported the three theory-driven behaviour scales and indicated reasonable to good construct validity. The marginal reliability for the scales ranged from 0.84 to 0.87, and adequate measurement precision along the latent continua was found. CONCLUSIONS: The tool appears to be promising for measuring the behavioural determinants of direct support professionals for the physical-activity support of people with ID and has potential as a tool for identifying areas to focus on for interventions and policies in the future.

Factors associated with direct support professionals' behaviour in the physical activity support provided to people with intellectual disabilities.

BACKGROUND: Direct support professionals play an important role in facilitating physical activity support for people with intellectual disabilities (ID). This study examined how the characteristics of people with ID and the characteristics of direct support professionals are related to the professionals' behaviour when supporting people with ID in physical activity. METHODS: A cross-sectional approach was used. Direct support professionals (n = 217) who support people with ID completed a self-report questionnaire, which aimed to measure the components that produced behaviour when providing physical activity support for people with ID. Associations with the characteristics of people with ID and the characteristics of the professionals were analysed using multivariate linear regression models. RESULTS: The results demonstrate that the professionals' characteristics - such as age, workplace and training - were related to the variance in the components that theoretically produced the direct support professionals' behaviour. The characteristics of the people with ID did not contribute to the variance in the direct support professionals' behaviour. CONCLUSIONS: The findings suggest that professional characteristics are the dominant reasons for the differences observed in the capability, opportunity and motivation of direct support professionals to provide physical activity support. This study also underscores the need for integrated training programmes to help direct support professionals promote physical activity in people with ID.

Patterns of multimorbidity in people with severe or profound intellectual and motor disabilities.

BACKGROUND: People with severe or profound intellectual and motor disabilities (SPIMD) experience multimorbidity and have complex health needs. Multimorbidity increases mortality, decreases functioning, and negatively influences quality of life. Information regarding patterns of multimorbidity in people with SPIMD may lead to proactive prevention, specifically detection and treatment of physical health problems at an early stage and prevention of secondary complications. AIM: The aim of this study was to explore patterns of multimorbidity in individuals with SPIMD. METHODS AND PROCEDURES: Data from medical records and care plans on reported physical health problems of 99 adults with SPIMD were analysed. To explore the co-occurrence of physical health problems, cross tabulations and a 5-set Venn Diagram were used. OUTCOMES AND RESULTS: The most common combination of two physical health problems comprise the most prevalent physical health problems, which included visual impairment, constipation, epilepsy, spasticity, and scoliosis. These five issues occurred as a multimorbidity combination in 37% of the participants. In 56% of the participants a multimorbidity combination of four health problems emerged, namely constipation, visual impairment, epilepsy, and spasticity. CONCLUSIONS AND IMPLICATIONS: People experiencing SPIMD have interrelated health problems. As a consequence, a broad variety of potential interactions between physical health problems and their treatments may occur. Identifying multimorbidity patterns can provide guidance for accurate monitoring of persistent health problems and, early detection of secondary complications. However, the results require confirmation with larger samples in further studies.

Time use of parents raising children with severe or profound intellectual and multiple disabilities.

BACKGROUND: Raising children with severe or profound intellectual and multiple disabilities (PIMD) is expected to put extreme pressure on parental time use patterns. The aim of this study was to examine the total time use of mothers and fathers raising children with PIMD and compare it with the time use of parents of typically developing children. METHOD: Twenty-seven fathers and 30 mothers raising children with PIMD completed a time use diary on a mobile phone or tablet app, as did 66 fathers and 109 mothers of typically developing children. Independent t-tests and Mann-Whitney tests were performed to compare mean time use. RESULTS: There are no differences in the time use of parents of children with PIMD on contracted time (paid work and educational activities) and necessary time (personal care, eating and drinking and sleeping) when compared with parents of typically developing children. There are significant differences between the parents of children with PIMD and the parents of typically developing children in terms of committed time (time for domestic work and the care and supervision of their children) and free time. The mothers of children with PIMD spend significantly less time on domestic work and more time on care and supervision than mothers of typically developing children. CONCLUSIONS: This study shows that the parents of children with PIMD have to spend a significant amount of time on care tasks and have on average 1.5 h less free time per day than parents of typically developing children. This is a striking difference, because leisure time can substantially contribute to well-being. Therefore, it is important not only to consider a child with PIMD's support needs but also to identify what parents need to continue their children's daily care and supervision.

Physical health issues in adults with severe or profound intellectual and motor disabilities: a systematic review of cross-sectional studies.

BACKGROUND: People with severe or profound intellectual and motor disabilities (SPIMD) encounter several risk factors associated with higher mortality rates. They are also likely to experience a cluster of health problems related to the severe brain damage/dysfunction. In order to earlier detect physical health problems in people with SPIMD, first of all, knowledge regarding the prevalence of physical health problems is necessary. The aim of this systematic review was to methodically review cross-sectional studies on the prevalence of various types of physical health problems in adults with SPIMD. METHOD: MedLine/PubMed, CINAHL, Embase, PsycINFO and Web of Science were searched for studies published between 2004 and 2015. The quality of the incorporated studies was assessed utilising an adjusted 'risk of bias tool' for cross-sectional studies. To estimate the prevalence of the health problems, the proportion and corresponding confidence interval were calculated. A random effect meta-analysis was performed when at least three studies on a specific health problem were available. RESULTS: In total, 20 studies were included and analysed. In the meta-analysis, a homogeneous prevalence rate of 70% (CI 65-75%) was determined for epilepsy. Heterogeneous results were ascertained in the meta-analysis for pulmonary/respiratory problems, hearing problems, dysphagia, reflux disease and visual problems. For the health problems identified in two studies or in a single study, the degree of evidence was low. As expected, higher prevalence rates were found in the current review compared with people with ID for visual problems, epilepsy and spasticity. CONCLUSION: This review provides an overview of the current state of the art research on the prevalence of health problems in adults with SPIMD. There is a substantial need for comprehensive epidemiological data in order to find clusters of health problems specific for people with SPIMD. This would provide insight into the excess morbidity associated with SPIMD.

Relabelling behaviour. The effects of psycho-education on the perceived severity and causes of challenging behaviour in people with profound intellectual and multiple disabilities.

BACKGROUND: Prevalence rates of challenging behaviour are high in children and adults with profound intellectual and multiple disabilities (PIMD). Moreover, many of these behaviours are observed daily. Direct support staff report that most challenging behaviour identified has little impact on the person with PIMD and attribute challenging behaviour in children and adults with PIMD mainly to a biomedical model. The purpose of this study was to evaluate whether an intervention (psycho-education) had any effect on direct support staff's assessment of challenging behaviour in terms of its severity and their biomedical causal explanations (attributions) for this behaviour. METHOD: A stepped wedge study design was used to evaluate the effects of a psycho-education intervention on the perceived severity and the attributions offered for challenging behaviour of people with PIMD by 198 direct support staff. We used questionnaires assessing the perceived severity of challenging behaviour and staff views of its causes. Data on the dependent variables were collected at four 1-month intervals. RESULTS: The intervention was found to have an effect on the perceived severity of challenging behaviour identified in people with PIMD in the sense that staff generally scored challenging behaviour as more severe in its consequences after the intervention. However, this effect was very small. No significant effects were found in terms of reduction in the biomedical scale scores. CONCLUSION: No evidence for the effectiveness of a psycho-educational approach on the assessment of challenging behaviour in terms of severity and the biomedical attributions for behaviour was found. More research is required to explore further the effects of more elaborate training using methods to enable direct support staff to reflect on the behaviour of people with PIMD and on their own behaviour.

Prevalence of reported physical health problems in people with severe or profound intellectual and motor disabilities: a cross-sectional study of medical records and care plans.

BACKGROUND: People with severe or profound intellectual and motor disabilities (SPIMD) experience numerous serious physical health problems and comorbidities. Knowledge regarding the prevalence of these problems is needed in order to detect and treat them at an early stage. Data concerning these problems in individuals with SPIMD are limited. Therefore, the aim of this study was to determine the prevalence of reported physical health problems in adults with SPIMD through a review of medical records and care plans. METHOD: We conducted a cross-sectional study employing data obtained from medical and support records. A sample of adults with SPIMD was recruited in eight residential care settings. Physical health problems that had occurred during the previous 12 months or were chronic were recorded. RESULTS: The records of 99 participants were included. A wide range of physical health problems were found with a mean of 12 problems per person. Very high prevalence rates (>50%) were found for constipation, visual impairment, epilepsy, spasticity, deformations, incontinence and reflux. CONCLUSIONS: The results suggest that people with SPIMD simultaneously experience numerous, serious physical health problems. The reliance on reported problems may cause an underestimation of the prevalence of health problems with less visible signs and symptoms such as osteoporosis and thyroid dysfunction.

Making a difference? A comparison between multi-sensory and regular storytelling for persons with profound intellectual and multiple disabilities.

BACKGROUND: Multi-sensory storytelling (MSST) was developed to include persons with profound intellectual and multiple disabilities in storytelling culture. In order to increase the listeners' attention, MSST stories are individualised and use multiple sensory stimuli to support the verbal text. In order to determine the value of MSST, this study compared listeners' attention under two conditions: (1) being read MSST books and (2) being read regular stories. METHOD: A non-randomised control study was executed in which the intervention group read MSST books (n = 45) and a comparison group (n = 31) read regular books. Books were read 10 times during a 5-week period. The 1st, 5th and 10th storytelling sessions were recorded on video in both groups, and the percentage of attention directed to the book and/or stimuli and to the storyteller was scored by a trained and independent rater. Two repeated measure analyses (with the storytelling condition as a between-subject factor and the three measurements as factor) were performed to determine the difference between the groups in terms of attention directed to the book/stimuli (first analysis) and storyteller (second analysis). A further analysis established whether the level of attention changed between the reading sessions and whether there was an interaction effect between the repetition of the book and the storytelling condition. RESULTS: The attention directed to the book and/or the stimuli was significantly higher in the MSST group than in the comparison group. No significant difference between the two groups was found in the attention directed to the storyteller. For MSST stories, most attention was observed during the fifth reading session, while for regular stories, the fifth session gained least attentiveness from the listener. CONCLUSION: The persons with profound intellectual and multiple disabilities paid more attention to the book and/or stimuli in the MSST condition compared with the regular story telling group. Being more attentive towards the book and stimuli might give persons with PIMD the opportunity to apprehend the story and to be included in storytelling culture.

Risk factors associated with challenging behaviour in people with profound intellectual and multiple disabilities.

BACKGROUND: Several factors that correlate with the onset or continuation of challenging behaviour are mentioned in research. These are factors related to persons with ID, but also to direct support professionals and the context. Although many of these factors seem to affect the onset or continuation of challenging behaviour in people with ID in general, results are often inconclusive and have little focus on people with profound intellectual and multiple disabilities (PIMD). The present study aimed to assess the extent to which known factors related to challenging behaviour are also applicable to a group of 198 people with PIMD. METHOD: To determine which factors were associated with challenging behaviour, univariate analyses on associations between known risk factors and challenging behaviour were conducted. The associated factors were then subject to a regression analysis to determine the extent to which they explain the prevalence of challenging behaviour and can thus be seen as factors associated with challenging behaviour. RESULTS: The results show that, in particular, factors concerning the personal characteristics of people with PIMD, such as sleeping problems and auditory problems, were related to the variance in mean frequency of challenging behaviour. Only one factor related to the direct support professionals was found: when these professionals had been offered training on the subject of challenging behaviour in people with intellectual disabilities in general, they identified significantly more withdrawn behaviour. We found no contextual factors related to challenging behaviour. CONCLUSION: These findings are generally consistent with findings reported in other studies, especially concerning the personal characteristics of people with PIMD. Further research should focus on the effects of providing safe auditory environments and appropriate sleep schedules for people with PIMD on the occurrence of challenging behaviour.

Staff attributions of the causes of challenging behaviour in children and adults with profound intellectual and multiple disabilities.

A study has shown that staff do not generally perceive challenging behaviour in people with profound intellectual and multiple disabilities (PIMD) as being of serious consequence. In this study we aimed to gain a better understanding of the causal explanations that direct care and support staff give for challenging behaviour in this group. The purpose of this study was twofold: (1) to determine the way staff attribute challenging behaviour in children and adults with PIMD; and (2) to analyse whether more experienced staff attribute challenging behaviour in children and adults with PIMD differently than less experienced staff. In total, 195 direct support staff and an equal number of children and adults with PIMD participated in the study. Direct support staff filled out the Challenging behaviour Attribution Scale (five causal explanatory models of challenging behaviour) to explain challenging behaviour in one individual that they supported. The results show that direct support staff as a whole report the biomedical model as the most plausible explanation for challenging behaviour in children and adults with PIMD. However, in the present study the mean scores on all models are low. This might indicate that a large number of staff found none of the models particularly useful as possible explanations of challenging behaviour in people with PIMD. This could mean that staff have difficulties stating the cause of challenging behaviour in this group. Another possible explanation could be that there is little scientific knowledge about causing and maintaining factors of challenging behaviour in people with PIMD. It could also mean that staff have additional explanations for challenging behaviour in this target group that are not mentioned in the instrument used. Future research should address these issues. No differences were found between more experienced and less experienced direct support staff.

The structure of informal social networks of persons with profound intellectual and multiple disabilities.

BACKGROUND: Persons with less severe disabilities are able to express their needs and show initiatives in social contacts, persons with profound intellectual and multiple disabilities (PIMD), however, depend on others for this. This study analysed the structure of informal networks of persons with PIMD. MATERIALS AND METHODS: Data concerning the number, type and frequency of contacts were collected in 205 persons with PIMD. RESULTS: The mean number of contact persons was 5.1 (range: 0-26, SD: 4.2) per year. 79.4% of the contact persons are family, with an average of 72.3 contacts per year. Parents had significantly more contact compared to the other informal contact persons. In 2.2% of the sample contacts with peers were seen. CONCLUSIONS: The informal networks of persons with PIMD consist mainly of family. The question arises how informal networks can be expanded and which role professionals have in this process.

Informal social networks of people with profound intellectual and multiple disabilities: relationship with age, communicative abilities and current living arrangements.

BACKGROUND: People with profound intellectual and multiple disabilities (PIMD) have limited informal social contacts. Research to determine the factors which can positively influence establishing sound informal social contacts is required. MATERIALS AND METHODS: Regression analysis for 200 people with PIMD was used to analyse how age, communicative abilities and current living arrangements were related to the number and frequency of their contacts. RESULTS: Only age was negatively related to both the number and frequency of social contacts. Current living arrangements related only to the frequency of contacts. Communicative abilities related to neither. CONCLUSIONS: Like people with intellectual disabilities, age and living arrangements are related to the informal social networks of people with PIMD. However, for people with PIMD, these networks are already more limited. Therefore, professionals need to be attentive to the maintenance and/or expansion of the social networks of people with PIMD at an early stage.

What parents find important in the support of a child with profound intellectual and multiple disabilities.

BACKGROUND: The importance of a partnership between parents and professionals in the support of children with disabilities is widely acknowledged and is one of the key elements of 'family-centred care'. To what extent family-centred principles are also applied to the support of persons with profound intellectual and multiple disabilities (PIMD) is not yet known. AIM: The purpose of this exploratory study was to examine what parents with a child with PIMD find important in the support of their child. In addition, we examined which child or parent characteristics influence these parental opinions. METHOD: In total, 100 parents completed an adapted version of the Measure of Processes of Care. Mean unweighted and weighted scale scores were computed. Non-parametric tests were used to examine differences in ratings due to child (gender, age, type and number of additional disabilities, type of services used and duration of service use) and parent characteristics (gender, involvement with support and educational level). RESULTS: Parents rated situations related to 'Respectful and Supportive Care' and 'Enabling and Partnership' with averages of 7.07 and 6.87 respectively on a scale from 1 to 10. They were generally satisfied with the services provided, expressed in a mean score of 6.88 overall. The age of the child significantly affected the scores for 'Providing Specific Information about the Child'. Parents of children in the '6-12 years' age group gave significantly higher scores on this scale than did parents of children in the '≥17 years' age group (U = 288, r = -0.34). CONCLUSION: This study shows that parents with children with PIMD find family-centred principles in the professional support of their children important. Although the majority of parents are satisfied with the support provided for their children, a substantial minority of the parents indicated that they did not receive the support they find important.

Staff interactive style during multisensory storytelling with persons with profound intellectual and multiple disabilities.

BACKGROUND: Multisensory storytelling (MSST) is an individualised activity for people with profound intellectual and multiple disabilities (PIMD) in which a story is being told with an emphasis on sensory experiences and social interaction. MSST is a promising approach, but needs more empirical research evidence. In general, there is a lack of research about staff interaction during specific activities with people with PIMD. In the present study, we explored the possibility to describe staff interactive style during MSST making use of a global coding instrument. METHODS: Twenty dyads of a person with PIMD and a professional caregiver participated in an observation study. The caregivers received training in MSST and told a multisensory story to their client once a week, for a period of 10 weeks. The first, fifth and last session were recorded on video. Staff interactive style was coded using an adapted version of the Maternal Behavior Rating Scale, with a consensus rating procedure. RESULTS: Professional caregivers scored moderately on the Maternal Behavior Rating Scale. Repeated measures analyses showed no change in time. We did not find a relationship between staff interactive style and client or staff characteristics. CONCLUSIONS: The Maternal Behavior Rating Scale contributes to our understanding of staff interactive style during activities with people with PIMD. Specifically for MSST, the moderate scores on the interactive style dimensions were unexpected, because the individualised MSST activity created an optimal situation for high-quality interaction with people with PIMD. Because the interactive style did not improve through the repetition of the activity either, these results might point to a need for staff training in achieving high-quality interaction during activities like MSST.

Frequency and severity of challenging behaviour in people with profound intellectual and multiple disabilities.

The main goals of this study were to determine the prevalence, frequency and severity of challenging behaviour in people with profound intellectual and multiple disabilities (PIMD). Because in the literature several health problems and sensory impairments are associated with the onset and existence of challenging behaviour, this relationship was also examined. This study involved 181 people with PIMD (age: mean: 35; SD: 19, 56% male). The Behaviour Problem Inventory was used to determine prevalence, frequency and severity of self-injurious (SIB), stereotypical and aggressive/destructive behaviour, and an additional questionnaire was used to determine the presence of sensory impairments and health problems among the participants. Results show a prevalence of 82% for SIB and stereotypical behaviour in the sample. Aggressive/destructive behaviour was seen in 45% of the participants. Concerning the frequency, on average SIB occurs on a daily or weekly basis. Stereotypical behaviour is seen on a daily basis and aggressive/destructive behaviour is usually reported once a week. All three types of challenging behaviour also occur on an hourly basis. The severity of challenging behaviour is usually rated by staff as of minor consequence for the person with PIMD. Furthermore, a relationship was found between having visual, tactile or psychiatric problems and the occurrence of challenging behaviour. Participants with visual impairments, tactile impairments or psychiatric problems showed significantly higher mean scores regarding challenging behaviour. Challenging behaviour within the target group of people with PIMD is very common. The prevalence figures are high, but direct support professionals are not inclined to rate such behaviour as of serious consequence.

The completion rate of colonoscopy in normal daily practice: factors associated with failure.

BACKGROUND: Colonoscopy is an important diagnostic procedure for screening as well as for patients presenting with complaints. The completion of a colonoscopy is defined as cecal intubation. A large single center study was done in order to evaluate the completion rate of colonoscopy and identify reasons for failure. PATIENTS AND METHODS: We reviewed all consecutive endoscopies of the lower digestive tract done over a period of 15 years by 2 endoscopists. The main outcome measure was a successful cecal intubation. RESULTS: 14,139 consecutive colonoscopies were done. Overall cecal intubation was successful in 11,787 procedures (83.3%). Three hundred and sixty-one of the non-successful procedures were due to insufficient colon cleansing, and no significant abnormalities were seen in 362 procedures. In the remaining 1,629 endoscopies, significant diagnoses were made. The presence of colorectal cancer, diverticula and inflammatory bowel disease were significant findings in non-successful procedures. CONCLUSION: In normal daily practice, colonoscopy is completed in 83.3% of the procedures. Reasons for failure are obstructing tumors, diverticula and insufficient colon cleansing.

The documentation of health problems in relation to prescribed medication in people with profound intellectual and multiple disabilities.

BACKGROUND: Persons with profound intellectual and multiple disabilities (PIMD) suffer from a wide range of health problems and use a wide range of different drugs. This study investigated for frequently used medication whether there was a health problem documented in the medical notes for the drug prescribed. METHOD: Persons with PIMD with an estimated intelligence quotient of 25 and profound or severe motor disorders were studied. Data on health problems were taken from medical notes and prescribing data were obtained from pharmacies. Data covering 1 year were analysed. For four therapeutic areas (anticonvulsants, laxatives, drugs for peptic ulcer and gastro-oesophageal reflux disease and psycholeptics), we determined whether we could find an indication for prescribed medication. RESULTS: Some 254 persons with PIMD (46% male, 54% female; median age 49 years, range 6-82) from eight residential facilities participated. Some 226 participants (89%) were prescribed medication over the course of 1 year. An indication for the prescribed medication was documented for 92% (n = 130) (95% confidence interval 88-96%) of 141 participants on anticonvulsants, for 68% (n = 112) (61-75%) of 165 participants on laxatives, for 44% (n = 58) (36-52%) of 132 participants on drugs for peptic ulcer and gastro-oesophageal reflux disease, and for 89% (n = 102) (83-95%) of 115 participants on psycholeptic drugs. CONCLUSIONS: The best level of documentation was found for anticonvulsants the worst for drugs for peptic ulcer and gastro-oesophageal reflux disease. Lack of documenting an indication may be due to off-label use, inadvertent continuation of no longer indicated medication, inadequate documentation and underdiagnosis. Adequate documentation practices are essential because of the communication problems that are characteristic for persons with PIMD.