Dutch Dataset Pain Rehabilitation in daily practice: Content, patient characteristics and reference data.

BACKGROUND: No core set of measurement tools exists to collect data within clinical practice. Such data could be useful as reference data to guide treatment decisions and to compare patient characteristics or treatment results within specific treatment settings. METHODS: The Dutch Dataset Pain Rehabilitation was developed which included the six domains of the IMMPACT core set and three new domains relevant in the field of rehabilitation (medical consumption, patient-specific goals and activities/participation). Between 2010 and 2013 the core set was implemented in 32 rehabilitation facilities throughout the Netherlands. RESULTS: A total of 8200 adult patients with chronic pain completed the core set at first consultation with the rehabilitation physician. Adult patients (18-90 years) suffering from a long history of pain (38% >5 years) were referred. Patients had high medical consumption and less than half were working. Although patients were referred with diagnosis of low back pain or neck or shoulder pain, a large group (85%) had multisite pain (39% 2-5 painful body regions; 46% >5 painful body regions). Scores on psychosocial questionnaires were high, indicating high case complexity of referred patients. Reference data for subgroups based on gender, pain severity, pain locations and on pain duration are presented. CONCLUSIONS: The data from this clinical core set can be used to compare patient characteristics of patients of other treatment setting and/or scientific publications. As treatment success might depend on case complexity, which is high in the referred patients, the advantages of earlier referral to comprehensive multidisciplinary treatment were discussed. SIGNIFICANCE: A detailed description of case complexity of patients with chronic pain referred for pain rehabilitation. Insight in case complexity of patients within subgroups on the basis of gender, pain duration, pain severity and pain location. These descriptions can be used as reference data for daily practice in the field of pain rehabilitation and can be used to evaluate, monitor and improve rehabilitation care in care settings nationwide as well as internationally.

Social functioning in adulthood: Understanding long-term outcomes of adolescents with chronic pain/fatigue treated at inpatient rehabilitation programs.

BACKGROUND: Chronic pain and fatigue are both common complaints in childhood and adolescence and often persist over time. The aim of the study was to investigate whether chronic pain/fatigue persists during adulthood and how former patients function and participate in society as adults. METHODS: This historical cohort study used questionnaires to gather the data. Predictors for social participation in adulthood were also identified. Differences in functioning and health care use between young adults with current pain/fatigue complaints and those without were also discussed. RESULTS: Ninety-four young adults responded; their mean age was 26.6 years and 91.5% were women. The average time since treatment was 10.2 years. 63.4% reported ongoing or new pain/fatigue complaints. 72.0% had a paid job; of those who worked, 22.1% reported taking sick leave in the past month. 78.7% of them reported having one or more chronic diseases. A higher level of pain/fatigue measured pre-treatment was identified as a predictor for more impaired social participation in adulthood. Young adults with current pain/fatigue complaints reported more healthcare utilization, lower levels of physical functioning and limitations in daily activities due to physical problems. CONCLUSIONS: A considerable number of these young adults still have pain/fatigue complaints in adulthood. More pain/fatigue pre-treatment during adolescence predict impaired functioning in the work-educational domain in young adulthood. WHAT DOES THIS STUDY ADD?: This study examines the social participation of young adults who suffered from severe chronic pain/fatigue during adolescence. Predictors for social participation are reported, as are the differences between young adults with and without persistent pain/fatigue complaints.

Cognitive status at discharge from the hospital determines discharge destination in traumatic brain injury patients.

PURPOSE: To determine which basic and functional status characteristics of patients with a moderate or severe traumatic brain injury (TBI) are associated with discharge destination. METHOD: Cross-sectional study among TBI patients. The study included 111 patients aged 16-67 years with a moderate-to-severe TBI (Glasgow Coma Scale (GCS) score 3-14). Functional outcome was assessed with Barthel Index (BI), Functional Independence Measurement (FIM), Level of Cognitive Functioning Scale (LCFS), Functional Assessment Measurement (FAM), Supervision Rating Scale (SRS) and Neurobehavioural Rating Scale (NRS). Patients were interviewed at the time of being discharged from hospital. Outcome variable was discharge destination; (1) home vs. institution and (2) rehabilitation centre vs. nursing home. RESULTS: Gender, age and length of stay were not associated with discharge destination. TBI severity, physical status, level of arousal and cognitive status were univariately associated. Multivariate analyses, however, showed that the risk of being admitted to an institution was significantly higher for those with severe TBI (adjusted OR = 14) and/or lowered cognitive status at the time of discharge from hospital (adjusted OR = 12). CONCLUSIONS: Discharge destination is associated with TBI-severity at admittance to the hospital and cognitive status at discharge from the hospital.

Being restricted in participation after a traumatic brain injury is negatively associated by passive coping style of the caregiver.

PURPOSE: To examine whether the caregivers' coping style is associated with the functional outcome of the traumatic brain injury (TBI) patient 1 year post-injury. METHOD: A cross-sectional study among patients with a TBI, including their primary caregivers. The study included 51 patients aged 17-64 years with a moderate-to-severe TBI and 51 caregivers (23 parents and 28 partners) aged 23-67 years. The coping preferences of the caregivers were assessed at minimum 6 and maximum 12 months post-injury, by filling out the Utrecht Coping List (UCL) and were related to limitations in activity, as measured with the Frenchay Activities Index and with restrictions in participation as measured with the Sickness Impact Profile-68 of TBI patients 1 year post-injury. The patients were interviewed at their homes; the caregivers received and returned the UCL by mail. RESULTS: The patients' age and the caregivers' coping style are independently associated with restrictions in participation 1 year post-injury. CONCLUSIONS: A passive coping style of the primary caregiver is negatively associated with the patient's functional outcome in terms of participation in society.

Cognitive functioning of adolescents and young adults with meningomyelocele and level of everyday physical activity.

PURPOSE: To explore whether cognitive functioning in patients with meningomyelocele (MMC) is related to level of everyday physical activity. METHOD: In a cross-sectional study in 14 patients with MMC (aged 14 - 26 years) a neuropsychological test battery was administered to each patient. Everyday physical activity of the patients was measured with an accelerometry-based Activity Monitor (AM), and compared to 14 healthy comparison subjects. RESULTS: Intellectual ability of 10 patients was in the normal range. For memory and verbal learning, executive functioning, divided attention and reaction speed subnormal scores were present in six or more patients. Time spent on dynamic activities was low in patients with MMC as compared to healthy subjects. After controlling for intellectual ability, we found that in patients with MMC (i) executive functioning was positively related, and (ii) word production was negatively related to everyday physical activity. CONCLUSION: We found some indication that specific impairments in executive functioning might be related to everyday physical activity of adolescents and young adults with MMC.

Reliability and sensitivity to change of measurement instruments used in a traumatic brain injury population.

OBJECTIVE: To compile a minimum data set for the follow-up of traumatic brain injury patients from discharge from hospital to one year post injury to assess functioning and participation in the physical, cognitive and psychosocial domains, and in quality of life. DESIGN: Repeated questionnaire interviews by two observers to establish inter-observer reliability of the measurement instruments at discharge and at one year post injury, as well as their sensitivity to change over time in traumatic brain injury patients. SETTING: Department of neurosurgery of an academic hospital, department of a rehabilitation centre, and at the patients' homes in the Netherlands. SUBJECTS: The study at discharge included 25 patients aged 18-50 years with a moderate to severe traumatic brain injury (Glasgow Coma Scale score 3-14), whereas the one year post injury study included 14 patients aged 19-51 years. MAIN (OUTCOME) MEASURES: Physical domain: Barthel Index (BI), Functional Independence Measurement (FIM), Glasgow Outcome Scale (GOS), GOS Extended (GOSE). Cognitive domain: Disability Rating Scale (DRS), Functional Assessment Measurement (FAM), Levels of Cognitive Functioning Scale (LCFS), Neurobehavioural Rating Scale (NRS). Psychosocial domain: Community Integration Questionnaire (CIQ), Employability Rating Scale (ERS), Frenchay Activity Index (FAI), Multi Health Locus of Control (MHLC), Rehabilitation Activities Profile (RAP), Social Support List (SSL), Supervision Rating Scale (SRS), Wimbledon Self Reporting Rating Scale (WSRS). Quality of life: Coop/Wonca Charts (Coop), Rand SF-36 (Rand-36), Sickness Impact Profile-68 (SIP-68). RESULTS: At both discharge and at one year post injury, in the physical domain the FIM showed excellent squared weighted kappa (SWK ranging from 0.75 to 0.80), and intraclass correlation coefficient (ICC ranging from 0.75 to 0.92), and a relatively small standard error of measurement (SEM 3.22) and smallest detectable difference (SDD 8.92). In the cognitive domain the FAM and the NRS showed excellent SWK, and ICC, and a relatively small SEM and SDD. In the psychosocial domain the FAI showed excellent SWK (0.89), and ICC (0.87), and a relatively small SEM (2.64) and SDD (7.31). For quality of life, at both discharge and at one year post injury the SIP-68 and the Coop showed excellent SWK (0.87), and ICC (0.89), and a relatively small SEM (3.79) and SDD (10.51). At both time points SWK and ICC ranged from 0.80 to 0.89, SEM ranged from 1.47 to 1.98, and the SDD was 4.07. CONCLUSIONS: An example of a reliable minimum data set that is also able to detect changes over time is: the FIM, the FAM and the Coop for the early stages in recovery, extended with the NRS, the FAI, and the SIP-68 later in recovery, thereby covering all relevant domains after traumatic brain injury.

Traumatic brain injury: classification of initial severity and determination of functional outcome.

PURPOSE: The aim of the present manuscript is to review current methods for classifying initial severity and final outcome in traumatic brain injury (TBI) and to suggest a direction and form of further research. METHOD: The literature on valid and reliable measurements used in TBI-research for classifying initial severity and final outcome was reviewed. RESULTS: Classifying initial severity in patients with head injury according to clinical condition or CT-parameters is valid. Classifying outcome according to measurement tools of disability showed adequate validity and reliability. CONCLUSIONS: Future research in TBI outcome, particularly in rehabilitation medicine, should focus on determinants of outcome, identifying those patients who will have the greatest chance of benefiting from intensive rehabilitation programmes. More research is needed to determine the long-term functional outcome in TBI, the long-term socio-economic costs, and the influence of behavioural problems on family cohesion. Finally, validation of outcome measures is required in the TBI-population; the relative value of various outcome measures needs to be determined, and the usefulness and applicability of measures for health related quality of life in TBI should be established.