Results from 10 Years of a CBT Pain Self-Management Outpatient Program for Complex Chronic Conditions.

Background. Traditional unimodal interventions may be insufficient for treating complex pain, as they do not address cognitive and behavioural contributors to pain. Cognitive Behavioural Therapy (CBT) and physical exercise (PE) are empirically supported treatments that can reduce pain and improve quality of life. Objectives. To examine the outcomes of a pain self-management outpatient program based on CBT and PE at a rehabilitation hospital in Toronto, Ontario. Methods. The pain management group (PMG) consisted of 20 sessions over 10 weeks. The intervention consisted of four components: education, cognitive behavioural skills, exercise, and self-management strategies. Outcome measures included the sensory, affective, and intensity of pain experience, depression, anxiety, pain disability, active and passive coping style, and general health functioning. Results. From 2002 to 2011, 36 PMGs were run. In total, 311 patients entered the program and 214 completed it. Paired t-tests showed significant pre- to posttreatment improvements in all outcomes measured. Patient outcomes did not differ according to the number or type of diagnoses. Both before and after treatment, women reported more active coping than men. Discussion. The PMGs improved pain self-management for patients with complex pain. Future research should use a randomized controlled design to better understand the outcomes of PMGs.

Functional outcomes associated with adaptive seating interventions in children and youth with wheeled mobility needs.

OBJECTIVE: To determine the parent-reported functional outcomes associated with adaptive seating devices for wheeled mobility devices used by young people aged 1 to 17 years. DESIGN: Longitudinal case series. SETTING: Homes of participating parents. PARTICIPANTS: Parents (N=70, 63 mothers, 6 fathers, 1 grandmother) who had children with adaptive seating needs. INTERVENTION: Adaptive seating system for wheeled mobility devices. MAIN OUTCOME MEASURE: Family Impact of Assistive Technology Scale for Adaptive Seating (FIATS-AS). RESULTS: All parents completed the FIATS-AS 4 times-2 times before and 2 times after their child received a new adaptive seating system. Mixed-design analysis of variance did not detect significant mean differences among the FIATS-AS scores measured at baseline and 2 and 8 months after receiving the seating system (F2,134=.22, P=.81). However, the FIATS-AS detected a significant interaction between age cohort and interview time (F4,134=4.5, P<.001, partial η(2)=.16). Post hoc testing confirmed that 8 months after receiving the seating system was associated with a large improvement in child and family functioning for children <4 years, maintenance of functioning for children between 4 and 12 years, and a moderate decline in functioning for youth between 13 and 17 years. CONCLUSIONS: Adaptive seating interventions for wheeled mobility devices are associated with functional changes in the lives of children and their families that interact inversely with age. Future controlled longitudinal studies could provide further empirical evidence of functional changes in the lives of children and their families after the introduction and long-term use of specific adaptive seating interventions.

Electronic aids to daily living and quality of life for persons with tetraplegia.

PURPOSE: To compare the satisfaction with quality of life (QOL) of adults with tetraplegia from spinal cord injury (SCI) who use and do not use electronic aids to daily living (EADLs). METHOD: This study used a cross-sectional design. Thirty-six persons with spinal cord injuries or conditions at or above C5/6 level participated. Fifteen participants used EADL at home and 21 formed the comparison group of non-users of EADL; all were living in the community. We used the Quality of Life Profile-Physical Disabilities (QOLP-PD) to examine participant's QOL. RESULTS: Both groups rated the levels of importance of all aspects of QOL equally. The EADL users rated their satisfaction with QOL significantly higher for total QOLP-PD scores and for four of the nine domains, including all three domains of belonging. The groups did not differ in age, FIM scores, level of education, and hours of paid attendant care. The EADL user group had significantly more males than females, and had higher levels of SCI. CONCLUSIONS: EADLs appear to contribute to the experience of greater subjective QOL for persons with severe physical disability from high SCI. Prospective cohort studies designs that employ methods and analytic plans to study the causal effect of EADLs on QOL are recommended. The QOLP-PD was found to be a valid measure of QOL for this population.

Randomised controlled trial comparing two school furniture configurations in the printing performance of young children with cerebral palsy.

AIM: This randomised controlled trial compared the same-session effects of two different school furniture configurations on printing legibility. METHODS: A total of 30 school-age children with ambulatory cerebral palsy participated in this study. Each child provided one near-point printing sample of up to 34 letters while positioned on Mandal-type specialty school furniture and on standard school furniture. An assessor who was unaware of the intervention assignment scored printing errors. RESULTS: No significant difference in legibility score mean values between the interventions was detected and the effect size was small. CONCLUSIONS: Compared with standard school furniture, the use of specialty school furniture did not lead to immediate gains in printing legibility and other printing performance areas for children with cerebral palsy. Further study of the influence of functional abilities, other contextual factors and the longer-term use of school furniture on handwriting performance is recommended.

Effect of adaptive seating devices on the activity performance of children with cerebral palsy.

OBJECTIVE: To evaluate the short-term impact of 2 adaptive seating devices on the activity performance and satisfaction with performance of children with cerebral palsy (CP), as observed by their parents. DESIGN: Baseline-intervention-baseline study. SETTING: Homes of participating families. PARTICIPANTS: Parents and their children (N=30), mean age of 4 years 6 months, with Gross Motor Function Classification System levels III and IV CP participated. INTERVENTIONS: Two special purpose seating devices: one for sitting support on the floor or on a chair, the other for postural control on a toilet. MAIN OUTCOME MEASURES: Changes in activity performance and satisfaction were measured through parent ratings on the Canadian Occupational Performance Measure. We interviewed parents biweekly using the Home Activity Log to describe and explain their child's activity performance during the 3 study phases. RESULTS: Parents identified 139 activity performance issues (4.6 a child): 58.3% in self-care, 34.5% in play, and 7.2% in socialization and quiet recreation. We used paired t tests to demonstrate significantly improved performance and satisfaction with self-care and play activities when the children used the adaptive seating devices during the 6-week intervention phase. Three themes arose from the analysis of comments made by parents during Home Activity Log interviews: adaptive seating can have an enabling influence on the child, caregivers and family find adaptive seating useful, and the adaptive seating devices did not meet every family's needs. CONCLUSIONS: Parents reported that their young children with CP were more able to engage in self-care and play activities when using specific adaptive seating devices in their home. Parents indicated that their child's activity performance decreased after the seating devices were removed from their homes.

Reliability of speech generating devices: a 5-year review.

Individuals who use augmentative and alternative communication (AAC) depend on technology to meet their daily needs and form relationships. Speech generating devices (SGDs) are integral components of communication systems. Reliability of SGDs is critical for effective use in everyday life. This study examined the reliability of new SGDs and found that mean time to first failure was 42.7 (SD = 41.2) weeks and at least 40% required repairs within the first year of use. The components that most frequently broke down were touch screens, wiring, main boards, batteries, memory cards, and AC adaptors. The costs of repairing SGDs were analyzed. The clinical implications of device breakdown are identified for key stakeholders, including clients, families, service providers, funding agencies, and manufacturers.

The impact of adaptive seating devices on the lives of young children with cerebral palsy and their families.

OBJECTIVE: To determine the parent-perceived effect of adaptive seating devices on the lives of young children with cerebral palsy (CP) (aged 2-7y) and their families. DESIGN: Baseline-intervention-baseline study. SETTING: Homes of participating families. PARTICIPANTS: Thirty parents and their children with Gross Motor Function Classification System level III or IV CP. INTERVENTIONS: Two special-purpose seating devices: 1 for sitting support on the floor or on a chair and the other for postural control on a toilet. MAIN OUTCOME MEASURES: Family Impact of Assistive Technology Scale (FIATS) and Impact on Family Scale (IFS). RESULTS: Thirty parents (29 mothers, 1 father) and their children with CP participated. Repeated-measures analysis of variance detected significant mean differences among the FIATS scores (F(1.4,40.6)=19.25, P<.001). Post hoc testing confirmed significant mean differences in overall FIATS scores between baseline and intervention and intervention and postintervention phases. The test of within-subject effects did not detect a significant change among IFS mean scores. CONCLUSIONS: The introduction of adaptive seating devices for young children who need support to sit had a meaningful, positive impact on child and family life. Removal of the study devices showed a concomitant negative impact on key aspects of child and family life. Environmental resources, such as seating and other assistive technology devices, may have an important role to play in the lives of young children with physical disabilities and their families.

Impact of modafinil on spasticity reduction and quality of life in children with CP.

This randomized double blind AB/BA cross-over trial evaluates the effect of oral modafinil versus placebo on spasticity, function, and quality of life in children with cerebral palsy (CP). Outcomes were measured at the start and end of both 8-week treatment periods (modafinil and placebo). The order of the treatment periods was randomly assigned. There was a 4-week wash-out period between treatments. Primary outcomes include the Modified Ashworth Score (MAS), and the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD), a disorder-specific quality of life measure. Ten children were randomized and eight children completed the study. The mean age of participants was 11 years 5 months (SD 1 y 5 mo, range 8 y 8 mo-12 y 11 mo). Five of the participants were male and three female. Seven children had a diagnosis of spastic quadriplegic CP and one child had spastic diplegia with overflow tone to the upper extremities. The Gross Motor Function Classification System ranged from Level III to V with one child at Level III, six children at Level IV, and one at Level V. The CPCHILD pre- to post-total scores showed a slight improvement in quality of life during the placebo period and a slight deterioration in the modafinil period (overall mean change of 7.1, SD 7.6). A t-test between post differences was statistically significant (t=2.65, p=0.03) in favor of the placebo period. The MAS for elbow flexors, ankle flexors, and hip adductors did not show any significant reduction post-modafinil or post-placebo (p values ranged from 0.41-0.79). This study did not find evidence that modafinil reduces spasticity or has a positive impact on quality of life in children with spastic CP.

Secondary health complications in an aging Canadian spinal cord injury sample.

OBJECTIVES: This study describes self-reported incidence of secondary health complications (SHCs) and their associations with age, years postinjury (YPI), and impairment among a Canadian spinal cord-injured (SCI) cohort. DESIGN: Cross-sectional telephone survey methods were used to collect data on (1) sociodemographics, (2) impairment, (3) health status, and (4) self-reported SHCs on 781 adults >or=1 yr post-SCI living in Ontario, Canada. RESULTS: Logistic regression analyses were used to determine associations between self-reported incidences of SHCs with the following covariates: (1) age, (2) YPI, and (3) impairment. The odds ratios for cardiac complications, high blood pressure (HBP), and respiratory complications increased per year with age, whereas autonomic dysreflexia (AD), bladder infections, heterotopic ossification, psychological distress, and drug addiction decreased. The odds ratios for pressure ulcers, AD, and heterotopic ossification increased per YPI, whereas HBP, bowel problems, psychological distress, and depression decreased. Complete injuries were associated with bladder infections, pressure ulcers, and AD. Paraplegia was associated with HBP and bowel problems, and tetraplegia was associated with AD. CONCLUSIONS: The findings provide some clarification on factors associated with the occurrence of SHCs after SCI and are useful for informing health-promotion planners, clinicians, and stakeholders regarding the odds of SHCs with aging or among specific impairment groups.

Giving Youth a Voice (GYV): a measure of youths' perceptions of the client-centredness of rehabilitation services.

BACKGROUND: Although client-centred care is regarded as the optimum way of delivering health care, there is currently no method to measure the client-centredness of services for youth with disabilities. PURPOSE: To develop a measure of youths' perceptions of the client-centredness of health care services in rehabilitation. METHODS: The Giving Youth a Voice (GYV) questionnaire was adapted from the Measure of Processes of Care, a measure of caregiving from the perspective of parents. Items for a youth version of the questionnaire were generated from focus groups with youths who had received rehabilitation services. Content analysis of the groups yielded four themes, which became the subscales for the new measure. FINDINGS: GYV, a 56-item measure, has good internal reliability and test-retest reliability. Convergent validity was estimated through correlations with the Client Satisfaction Questionnaire. IMPLICATIONS: GYV provides an opportunity for youth with disabilities to have a voice about the rehabilitation services they receive.

Individualized outcome measures for evaluating life skill groups for children with disabilities.

BACKGROUND: The challenge of evaluating life skill groups is the need to assess skills reflecting the priorities and abilities of the individuals as well as the program focus. PURPOSE: This study describes the feasibility and utility of goal menus and individualized outcome measures in two life skill groups for children with disabilities. METHODS: Eleven children were evaluated at baseline and 5 weeks post-program using a modified Canadian Occupational Performance Measure (COPM) and modified Goal Attainment Scaling (mod-GAS). FINDINGS: COPM satisfaction median scores across all goals increased post-program by 3.0 points (P=0.001) and performance scores by 1.0 point (P=0.002). Mod-GAS scores for all participants were at least -1 (partial achievement), and 55% of participants achieved their functional goal (Mod-GAS = 0) with carryover into their community environments. IMPLICATIONS: This study supports the positive contribution of individualized measures to evaluate outcomes within life skill programs for children with disabilities.

Reliability of the family impact of assistive technology scale for families of young children with cerebral palsy.

OBJECTIVE: To examine the internal consistency and test-retest reliability of the Family Impact of Assistive Technology Scale (FIATS) when used to measure the perceptions of parents about important aspects of family life that may be influenced by their children's use of assistive devices. DESIGN: Repeated measure. SETTING: Homes of 50 participating families. PARTICIPANTS: Parents of young children with cerebral palsy. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: The FIATS. RESULTS: Through an a priori item-reduction process, we reduced the length of the FIATS from 89 to 64 items. We retained 8 of the 9 original subscales. The 8 subscales included the following: autonomy, caregiver relief, contentment, doing activities, effort, family and social interaction, caregiver supervision, and safety. Remaining items of the removed subscale (technology acceptance) correlated well with the subscale total, but did not relate well to the FIATS total score. This construct was retained as a separate but noncontributing scale within the FIATS. The overall FIATS and its 8 contributing subscales had acceptable internal consistencies and test-retest reliabilities. CONCLUSIONS: The FIATS shows promise as a homogeneous and reproducible multidimensional measure of dimensions of child and family life. We plan further testing to examine the sensitivity and clinical meaningfulness of change scores on the FIATS.

Development of the new Family Impact of Assistive Technology Scale.

Children with physical disabilities generally require more care, attention and direct supervision than children without disabilities. Research demonstrates that these higher care-giving demands are associated with poorer psychological and physical health states for parents and other family members. Assistive technologies may have a role in mitigating caregiver stress and burden by improving functional performance, social interaction and autonomy in children with physical disabilities. In this paper, we report on the initial development and testing of the Family Impact of Assistive Technology Scale - a new measure designed to detect the multidimensional effect of assistive device use on families who have young children with disabilities. To study the content validity and face validity of the Family Impact of Assistive Technology Scale, we conducted structured evaluations of the proposed constructs and items with 14 clinical experts and parents of young children with cerebral palsy. Experts agreed that the Family Impact of Assistive Technology Scale contains the key variables needed to study the effect of assistive technology use on child and family functioning. Parents concurred that items on the preliminary version were relevant and clear. Further research is planned to estimate the reliability and other aspects of validity of the Family Impact of Assistive Technology Scale.

Predictors of family system functioning after brain injury.

OBJECTIVES: To identify predictors of family system functioning after acquired brain injury (ABI). RESEARCH DESIGN: Retrospective design. METHODS AND PROCEDURES: Data on ABI-related impairments, level of awareness, neuropsychological functioning, caregiver strain and family system functioning were extracted from the files of 66 individuals with ABI and 148 family members who had enrolled in a community-based support programme. MAIN OUTCOMES AND RESULTS: Individuals with ABI, mothers, spouses, siblings and the family as a unit reported significant distress in family functioning compared to the norm. Higher caregiver strain and client gender (i.e. female) were predictive of poorer family system functioning. Neither ABI impairments nor neuropsychological variables were correlated with family functioning. CONCLUSIONS: The effects of ABI extend beyond the injured person and primary caregiver. The need for a family systems approach to family intervention after ABI is supported. Implications for practice and future research are discussed.

Is telephone assessment a valid tool in rehabilitation research and practice?

PURPOSE: To determine if face-to-face and telephone administration of questionnaires produce comparable results in rehabilitation research studies. METHOD A total of 80 participants who used eyeglasses as their primary visual assistive device agreed to participate. All completed the Life Orientation Test and the Psychosocial Impact of Assistive Devices Scale. Approximately half of the participants completed the forms after being approached by an interviewer and then were contacted by telephone 2 weeks later to complete the forms a second time. The other half of the participants initially completed the forms over the telephone and then met with an interviewer 2 weeks later and completed the forms face-to-face. RESULTS: For the forms used no statistically significant differences were found between groups or over time. CONCLUSION: For some questionnaires telephone administration may provide a convenient and cost-effective method of data collection. However, it should not be automatically assumed that all questionnaires will yield the same results regardless of the mode of administration used.