Caregiver Priorities Research Articles

Priority of Treatment Outcomes for Caregivers and Patients with Mild Cognitive Impairment: Preliminary Analyses.

IntroductionThe patient-centered movement advocates for greater attention to the outcomes that matter most to patients and their families. In neurodegenerative disease, determination of patient and caregiver priorities has received scant attention in part because dementia patients are deemed unreliable reporters. However, people with mild cognitive impairment (MCI) likely retain capacity to report their preferences.MethodsIn two separate MCI cohorts, we conducted preliminary analyses of patient and caregiver priorities among seven patient and five caregiver outcomes of the HABIT® Healthy Action to Benefit Independence & Thinking program (Mayo Clinic, Rochester, MN, USA).ResultsVia interview and paper-and-pencil reporting both patient and caregiver respondents’ ranked patient and caregiver quality of life and patient self-efficacy as highest priorities, ranking them ahead of patient and caregiver mood, patient functional status, patient distressing behaviors and caregiver burden. Patients and caregivers tended to value the outcomes for their loved ones higher than their own outcomes.ConclusionCaregivers appeared to be reasonable, but not perfect, proxies for patient reports. Additional research with larger cohorts and a more comprehensive range of outcomes is needed.Electronic supplementary materialThe online version of this article (doi:10.1007/s40120-016-0049-1) contains supplementary material, which is available to authorized users.

Effect of Hip Reconstructive Surgery on Health-Related Quality of Life of Non-Ambulatory Children with Cerebral Palsy.

The primary aim of this study was to evaluate the relationship of the migration percentage (a radiographic metric quantifying hip displacement) in children with Gross Motor Function Classification System (GMFCS) level-IV or V cerebral palsy and spastic hip dysplasia to the acetabular index and the health-related quality of life (HRQOL) as measured with the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) before and after reconstructive hip surgery. In a prospective cohort study (n = 38), the migration percentage, acetabular index, and CPCHILD scores were analyzed using the Pearson correlation analysis immediately before reconstructive hip surgery and at 6 weeks and 3, 6, 12, and 24 months after the surgery. Subgroup analysis was used to compare patients who had a preoperative migration percentage of ≥50% with those who had a preoperative migration percentage of <50% and to compare the acetabular index between patients who had a pelvic osteotomy and those who had not. Linear mixed models were used to analyze changes in the migration percentage, acetabular index, and CPCHILD scores over time. The preoperative migration percentage negatively correlated with the preoperative CPCHILD score (r = -0.50; p = 0.002). This relationship continued throughout the follow-up period such that, for each additional 1% correction in migration percentage, the CPCHILD total score increased by 0.2 point (p < 0.001). There was no correlation between the acetabular index and CPCHILD total score before or after surgery (p = 0.09 to 0.71). The preoperative CPCHILD total scores differed between the migration-percentile groups (mean difference = 13 points; 95% confidence interval = 3.3 to 22.8; p = 0.01). However, after hip surgery, the CPCHILD score improved similarly for both groups. These data support the effectiveness of reconstructive hip surgery for the treatment of spastic hip dysplasia to improve the HRQOL of non-ambulatory children with severe cerebral palsy. Prospective Level IV. See Instructions for Authors for a complete description of levels of evidence.

Pain and hospital admissions are important factors associated with quality of life in nonambulatory children.

This was the first study to investigate the factors associated with health-related quality of life (HRQoL) in nonambulatory children with cerebral palsy (CP), based on a HRQoL measure specifically developed for this population. The Dutch version of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD-DV) was used to measure HRQoL. It was completed by 66 parents of 47 boys and 19 girls with nonambulatory CP aged between five and 18 years with gross motor function classification system (GMFCS) levels of IV and V. Factors measured were the child's motor and cognitive impairments, comorbidities, pain, parents' education and occupations and family structure. Multiple linear regression analyses were used to determine the significant factors and the relative contribution of these factors to the CPCHILD-DV scores. The most important factors associated with poorer HRQoL scores were pain and hospital admissions in the previous six months. Other factors were as follows: increased GMFCS level, feeding by gastrostomy tube, inability to communicate verbally, cognitive impairment, poor seizure control and higher parents' educational qualifications. Pain and hospital admissions were the most important factors that were negatively associated with HRQoL in nonambulatory children with CP between five to 18 years.

Treatment goal setting for complex patients: protocol for a scoping review

IntroductionAn increasing number of people are living longer with multiple health and social care needs, and may rely heavily on health system resources. When dealing with multiple conditions, patients, caregivers...

A Preliminary Study to Assess Whether Spinal Fusion for Scoliosis Improves Carer-assessed Quality of Life for Children With GMFCS Level IV or V Cerebral Palsy.

Scoliosis affects 50% of children with Gross Motor Function Classification System (GMFCS) level IV or V cerebral palsy (CP). In children with complex neurodisability following intervention, the WHO considers quality of life (QoL) should be assessed to aid decision-making and assess the effects. This study assesses whether scoliosis surgery improves carer-assessed QoL for children with severe CP. Retrospective review of 33 children (16 male:17 female) with GMFCS level IV/V CP and significant scoliosis. Fifteen underwent observational treatment during childhood, and 18 underwent surgery. Questionnaire and radiographic data were recorded over a 2-year period. The carer-completed Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) questionnaire was used to assess QoL. In the observational group, Cobb angle and pelvic obliquity increased from 46 (40 to 60) and 8 degrees (0 to 28) to 62 (42 to 94) and 12 degrees (1 to 35). Mean CPCHILD score decreased from 50 (30 to 69) to 48 (27 to 69) (P<0.05). In the operative group, Cobb angle and pelvic obliquity decreased from 78 (52 to 125) and 14 degrees (1 to 35) to 44 (16 to 76) and 9 degrees (1 to 24). Mean CPCHILD score increased from 45 (20 to 60) to 58 (37 to 76) (P<0.05). Change in pain, and not presence of associated impairments, was the most significant factor affecting QoL changes for children in both groups. There was no difference in mobility, GMFCS level, feeding, or communication in either group before and after treatment. Nonoperative treatment for children with GMFCS level IV/V CP and a significant scoliosis was associated with a small decrease in carer-assessed QoL over 2 years. Spinal fusion was associated with an increase in QoL. Change in pain was the most significant factor affecting QoL changes, and is therefore an important factor to consider when deciding upon surgery. Level III-therapeutic retrospective study.

Patient and Caregiver Priorities for Outcomes in Hemodialysis: An International Nominal Group Technique Study.

In the context of clinical research, investigators have historically selected the outcomes that they consider to be important, but these are often discordant with patients' priorities. Efforts to define and report patient-centered outcomes are gaining momentum, though little work has been done in nephrology. We aimed to identify patient and caregiver priorities for outcomes in hemodialysis. Nominal group technique. Patients on hemodialysis therapy and their caregivers were purposively sampled from 4 dialysis units in Australia (Sydney and Melbourne) and 7 dialysis units in Canada (Calgary). Identification and ranking of outcomes. Mean rank score (of 10) for top 10 outcomes and thematic analysis. 82 participants (58 patients, 24 caregivers) aged 24 to 87 (mean, 58.4) years in 12 nominal groups identified 68 outcomes. The 10 top-ranked outcomes were fatigue/energy (mean rank score, 4.5), survival (defined by patients as resilience and coping; 3.7), ability to travel (3.6), dialysis-free time (3.3), impact on family (3.2), ability to work (2.5), sleep (2.3), anxiety/stress (2.1), decrease in blood pressure (2.0), and lack of appetite/taste (1.9). Mortality ranked only 14th and was not regarded as the complement of survival. Caregivers ranked mortality, anxiety, and depression higher than patients, whereas patients ranked ability to work higher. Four themes underpinned their rankings: living well, ability to control outcomes, tangible and experiential relevance, and severity and intrusiveness. Only English-speaking participants were eligible. Although trials in hemodialysis have typically focused on outcomes such as death, adverse events, and biological markers, patients tend to prioritize outcomes that are more relevant to their daily living and well-being. Researchers need to consider interventions that are likely to improve these outcomes and measure and report patient-relevant outcomes in trials, and clinicians may become more patient-orientated by using these outcomes in their clinical encounters.

Salvage procedures for the painful chronically dislocated hip in cerebral palsy.

The aims of this study were to report functional outcomes of salvage procedures for patients with cerebral palsy (CP) who have chronic dislocation of the hip using validated scoring systems, and to compare the results of three surgical techniques. We reviewed 37 patients retrospectively. The mean age at the time of surgery was 12.2 years (8 to 22) and the mean follow-up was 56 months (24 to 114). Patients were divided into three groups: 14 who underwent proximal femoral resection arthroplasty (PFRA group 1), ten who underwent subtrochanteric valgus osteotomy (SVO group 2), and 13 who underwent subtrochanteric valgus osteotomy with resection of the femoral head (SVO with FHR group 3). All patients were evaluated using the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) and the Pediatric Quality of Life Inventory (PedsQL). Significant improvements occurred in most CPCHILD and PedsQL subsection scores following surgery in all patients, without significant differences between the groups. There were 12 post-operative complications. Less severe complications were seen in group 1 than in groups 2 and 3. Salvage surgery appears to provide pain relief in patients with CP who have painful chronic dislocation of the hip. The three salvage procedures produced similar results, however, we recommend the use of PFRA as the complications are less severe. Salvage surgery can be of benefit to patients with CP with chronic painful hip dislocation, but should be limited to selected patients considering complications.

Parent-reported pain in non-verbal children and adolescents with cerebral palsy.

This cross-sectional study aimed to determine the prevalence, frequency, and intensity of parent-reported pain among non-verbal children with cerebral palsy (CP) and explore associations with medical, demographic, and parental psychosocial factors. Participants were parents of non-verbal outpatients (aged 2-20y) with CP at University of Malaya Medical Centre, Kuala Lumpur and two community centres. Parents answered the Caregiver Priorities and Child Health Index of Life with Disabilities Questionnaire and a pro forma regarding parent-reported frequency and intensity of pain during the preceding 4 weeks. Parental psychosocial well-being was assessed via the Depression, Anxiety and Stress Scale and Multidimensional Scale of Perceived Social Support. The response rate was 94%; 104 children (54 males, 50 females) were studied. The majority (51%) were in Gross Motor Function Classification System level V and 65% had spastic quadriplegia. Parents reported pain in 65%, intense pain in 17%, and daily pain in 28%. Intense and frequent pain was reported during physiotherapy. More intense pain was reported in older children (p=0.016) and those with spastic quadriplegia (p=0.020). Caregivers of non-verbal children with CP report a high frequency of pain. Pain intensity is associated with patient factors but not parental psychosocial factors.

Differences in health-related quality of life and caregiver burden after hip and spine surgery in non-ambulatory children with severe cerebral palsy.

The aim of this study was to evaluate changes in caregivers' perceptions of health-related quality of life (HRQOL) and caregiver impact in children with severe, non-ambulatory cerebral palsy after orthopedic surgery to correct hip or spine deformities. A prospective longitudinal cohort study (n=44) design was used to measure changes before and after surgery. Caregivers completed the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) and the Assessment of Caregiver Experience with Neuromuscular Disease (ACEND). Data collection was between February 2011 and February 2014. Caregivers were included if their child was 3 to 25 years old, had cerebral palsy in Gross Motor Function Classification System levels IV and V, and was scheduled for orthopedic surgery. Analysis of variance with repeated measures was used to assess changes before and at four time points after surgery. Forty-four caregivers participated. Caregivers' perceptions of their child's HRQOL demonstrated an improvement from baseline to 12 months (p<0.001). Patients who had spine surgery demonstrated a steady improvement over time, whereas patients who had hip surgery had a decrease at 6 weeks followed by steady improvement. Improvements were noted in five of six of the CPCHILD domains, with no changes in the quality of life domain. No changes were noted in any of the ACEND domains. Caregivers report an improvement in a variety of domains of HRQOL 1 year after orthopedic surgery.

Threats to polio eradication in high-conflict areas in Pakistan and Nigeria: a polling study of caregivers of children younger than 5 years

Elimination of poliovirus from endemic countries is a crucial step in eradication; however, vaccination programmes in these areas face challenges, especially in regions with conflict. We analysed interviews with caregivers of children living in two polio-endemic countries to assess whether these challenges are largely operational or also driven by resistance or misinformation in the community. We designed and analysed polls based on face-to-face interviews of a random sample of parents and other caregivers of children younger than 5 years in regions of Pakistan and Nigeria at high risk for polio transmission. In both countries, the sample was drawn via a stratified multistage cluster design with random route household selection. The questionnaire covered awareness, knowledge, and attitudes about polio and oral polio vaccine (OPV), trust in vaccination efforts, and caregiver priorities for government action. We assessed experiences of caregivers in accessible higher-conflict areas and compared their knowledge and attitudes with those in lower-conflict areas. Differences were tested with two-sample t tests. The poll consisted of 3396 caregivers from Pakistan and 2629 from Nigeria. About a third of caregivers who responded in higher-conflict areas of Pakistan (Federally Administered Tribal Areas [FATA], 30%) and Nigeria (Borno, 33%) were unable to confirm that their child was vaccinated in the previous campaign. In FATA, 12% of caregivers reported that they were unaware of polio, and in Borno 12% of caregivers reported that vaccinators visited but their child did not receive the vaccine or they did not know whether the child was vaccinated. Additionally, caregivers in higher-conflict areas are less likely to hold beliefs about OPV that could motivate acceptance and are more likely to hold concerns than are caregivers in lower-conflict areas. Beyond the difficulties in reaching homes with OPV, challenges for vaccination programmes in higher-conflict areas extend to limited awareness, negative attitudes, and gaps in trust. Vaccination efforts might need to address underlying attitudes of caregivers through direct communications and the selection and training of local vaccinators. Harvard T H Chan School of Public Health and UNICEF.

PO-0840 Parent-reported Pain In Non-verbal Children And Adolescents With Cerebral Palsy

Background and aims This study aimed to (i) determine the prevalence of parent-reported pain among non-verbal children with cerebral palsy (CP), (ii) determine the frequency and intensity of pain and (iii) explore associations with medical, parental and socioeconomic factors. Methods The study was cross-sectional. Participants were parents of non-verbal CP outpatients at University Malaya Medical Centre, Kuala Lumpur and two centres in the surrounding area. Patients were aged 2–19 years. Written informed consent was obtained. The Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD©) Questionnaire and a separate proforma were utilised for assessment of frequency and intensity of pain during the preceeding 4 weeks. Parental psychosocial well being was assessed via the Depression, Anxiety and Stress Scale (DASS-21) and the Multidimensional Scale of Perceived Social Support (MSPSS). Results The response rate was 94%, including 104 children (54 boys, 50 girls). The majority (51%) had GMFCS level V and 65% had spastic quadriplegia. Reported pain was 65%. The most frequent and intense pain was during physiotherapy. Nineteen (18%) reported that their children experienced pain >1 time per day and 10% reported daily pain. Severe pain was reported by 17%. There were no significant factors associated with frequency of pain. Older children (p Conclusion Recognition of pain in non-verbal CP patients is crucial for holistic management.

Does hip displacement influence health-related quality of life in children with cerebral palsy?

Objective: To evaluate the association of hip lateralisation with health-related quality of life (HRQL) in children with cerebral palsy (CP) using the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD®) questionnaire. Methods: We assessed n = 34 patients (mean age: 10.2 years, SD: 4.7 years; female: n = 16) with bilateral CP and Gross Motor Function Classification System (GMFCS) Level III–V using the CPCHILD® questionnaire. Hip lateralisation was measured by Reimer`s migration percentage (MP). Results: There was an association between both, MP and GMFCS with CPCHILD® total score. Stratified analyses did not suggest interaction of the association between MP and CPCHILD® total score by GMFCS level. After adjustment for GMFCS level, we found a significant linear decrease of CPCHILD® total score of −0.188 points by 1% increment in MP. Conclusions: There was an association between MP and HRQL, which could not be explained by the GMFCS level.

Transcultural adaptation and validation of the Korean version of Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD)

Purpose: The aim of this study was to translate and transculturally adapt the Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD) questionnaire into Korean language, and to test the reliability and validity, including the internal consistency, known-group validity and factor analysis of the Korean version of the CPCHILD. Methods: A Korean version of CPCHILD was produced according to internationally accepted guidelines. For validity testing, 194 consecutive parents or caregivers of children with cerebral palsy (CP) were recruited and completed the questionnaire. Internal consistency, test–retest reliability, and known-groups validity were evaluated and factor analysis was performed to validate the Korean version of the CPCHILD. Results: In terms of internal consistency, a Cronbach's alpha was above 0.90 in all domains of the CPCHILD (range 0.921 to 0.966), except the 5th domain (0.628). In terms of known-groups validity, the total score of the CPCHILD was significantly different according to the Gross Motor Function Classification System (GMFCS) level (p < 0.001). Intra-class correlation coefficient spanned from 0.517 to 0.801. Factor analysis showed that the five-factor solution of the CPCHILD explained 76.7% of the variance with 59.0, 6.5, 5.1, 4.2 and 3.2% of variance by each components number. Conclusions: The Korean version of CPCHILD was found to be a reliable and valid questionnaire of caregivers’ perspectives on the health-related quality of life in severely affected children with CP. However, the Korean version of CPCHILD contains some redundant items, and factor analysis suggested a five-domain questionnaire.Implication for RehabilitationThe Korean version of CPCHILD is a reliable, internally consistent, valid instrument for assessing the health-related quality of life in severely affected children with CP from the perspective of caregivers.After the transcultural adaptation and validation of the Korean CPCHILD, it can be reliably used in clinical and research settings to evaluate the health-related quality of life in Korean patients with CP.

Validation of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) in a sample of Dutch non-ambulatory children with cerebral palsy

Purpose: To assess the reliability and validity of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD)-Dutch Version, a proxy measure of health status and well-being of non-ambulatory children with cerebral palsy (CP). Methods: Parents (n = 66) of 47 boys/19 girls between 5 and 18 years with CP (GMFCS IV–V) participated. To assess the reliability each domain and the total measure was tested for internal consistency, test–retest and inter-rater reliability. Known-groups validity of the CPCHILD-DV was assessed by comparing mean scores of clinically distinct subgroups and convergent validity by correlating the CPCHILD-DV with the TNO-AZL Preschool Children Quality of Life (TAPQOL). Results: The mean CPCHILD-DV total score was 52.0 (SD11.5). Test–retest reliability of the total score as assessed by intraclass correlations (ICC) was 0.73 (domains: 0.55–0.80). For the inter-rater reliability the ICC was 0.64 (domains: 0.58–0.90); the Cronbach’s alpha’s ranged from 0.60 to 0.95. The CPCHILD score could differentiate between GMFCS levels and between subgroups of cognitive level in the domain “communication and social interaction”. There were moderate significant correlations (range rs: 0.31–0.50) between sections of CPCHILD-DV and TAPQOL. Conclusions: The CPCHILD-DV has sufficient reliability and validity as a proxy measure of health status and well-being of non-ambulatory children with CP.Implications for RehabilitationThe Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) can be used to estimate health related quality of life of non-ambulatory children with cerebral palsy.The Dutch version of the CPCHILD has sufficient reliability and validity to be used as a proxy measure in research and clinical practice.

German Translation of the Caregiver Priorities and Child Health Index of Life with Disabilities Questionnaire: Test–Retest Reliability and Correlation with Gross Motor Function in Children with Cerebral Palsy

We aimed to translate the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) questionnaire into German and to evaluate its reliability and validity by studying the association between CPCHILD scores and gross motor function as measured by the gross motor function classification system (GMFCS) in children with cerebral palsy (CP). The original CPCHILD questionnaire and manual were translated and back translated. It was administered to primary caregivers of persons with CP (GMFCS levels III-V) and was completed a second time 2 weeks after the first to measure test-retest reliability (n = 17). Primary caregivers of 68 children with CP; GMFCS level III (n = 14), level IV (n = 28), and level V (n = 26) completed the questionnaire. Mean total CPCHILD scores across GMFCS levels were 67.1 ± 14.9 for GMFCS level III, 56.6 ± 11.8 for level IV, and 44.3 ± 12.9 for level V. Good correlation (r = - 0.56) was observed between GMFCS and total scores test-retest reliability showed intraclass correlation coefficients between 0.4 and 0.9. The German CPCHILD yielded similar test-retest reliability and score distributions across the GMFCS level as the original version. The best correlations were observed for domains that are close to the functional deficits.

Brazilian Portuguese translation and cross-cultural adaptation of the “Caregiver Priorities and Child Health Index of Life with Disabilities” (CPCHILD©) questionnaire

BackgroundConsideration of the quality of life in relation to individual health status is crucial for planning and maintaining a system of patient-centered care. Until recently, there have been no suitable instruments to assess health-related quality of life (HRQoL,) of children and adolescents with severe, non-ambulant cerebral palsy (GMFCS functional levels IV and V). The “Caregiver Priorities and Child Health Index of Life with Disabilities Questionnaire” (CPCHILD©) was developed in English specifically for this population, and has been validated in Canada. The aim of this study was to translate and adapt the CPCHILD© Questionnaire into Brazilian Portuguese, thus permitting researchers in Brazil to access this important tool for measuring HRQoL in this population, as well as the possibility of making comparisons with other studies that use the same questionnaire in other languages.MethodThe cross-cultural adaptation included two forward translations by independent translators, their synthesis, two back-translations by independent translators, an assessment of the versions by an expert committee and the development of a pre-final version, which was tested on 30 caregivers of children (5 -18) with severe cerebral palsy (GMFCS IV & V).ResultsDespite the relative equivalence between the two translations, some items required adaptations for the synthesized version. Certain modifications were necessary in the pre-final version to achieve idiomatic equivalence. The modifications were required to account for the socioeconomic and cultural levels of the target population.ConclusionThe translation and cross-cultural adaptation of the CPCHILD© questionnaire provides a Brazilian Portuguese equivalent to measure the HRQoL of children with severe developmental disabilities, with the potential to measure the benefits of various procedures that are indicated for these patients. This adaptation exhibited a satisfactory level of semantic equivalence between the Portuguese target and the original English source versions. The validity of the Brazilian version of the instrument must be established in the future by assessing its psychometric properties on Brazilian epidemiological samples.

Evaluation of the effects of botulinum toxin A injections when used to improve ease of care and comfort in children with cerebral palsy whom are non-ambulant: a double blind randomized controlled trial

BackgroundChildren with cerebral palsy (CP) whom are non-ambulant are at risk of reduced quality of life and poor health status. Severe spasticity leads to discomfort and pain. Carer burden for families is significant. This study aims to determine whether intramuscular injections of botulinum toxin A (BoNT-A) combined with a regime of standard therapy has a positive effect on care and comfort for children with CP whom are non-ambulant (GMFCS IV/V), compared with standard therapy alone (cycle I), and whether repeated injections with the same regime of adjunctive therapy results in greater benefits compared with a single injecting episode (cycle II). The regime of therapy will include serial casting, splinting and/or provision of orthoses, as indicated, combined with four sessions of goal directed occupational therapy or physiotherapy.Method/designThis study is a double blind randomized controlled trial. Forty participants will be recruited. In cycle I, participants will be randomized to either a treatment group who will receive BoNT-A injections into selected upper and/or lower limb muscles, or a control group who will undergo sham injections. Both groups will receive occupational therapy and /or physiotherapy following injections. Groups will be assessed at baseline then compared at 4 and 16 weeks following injections or sham control. Parents, treating clinicians and assessors will be masked to group allocation. In cycle II, all participants will undergo intramuscular BoNT-A injections to selected upper and/or lower limb muscles, followed by therapy.The primary outcome measure will be change in parent ratings in identified areas of concern for their child’s care and comfort, using the Canadian Occupational Performance Measure (COPM). Secondary measures will include the Care and Comfort Hypertonicity Scale (ease of care), the Cerebral Palsy Quality of Life Questionnaire (CP QoL–Child) (quality of life), the Caregiver Priorities and Child Health Index of Life with Disabilities Questionnaire (CPCHILD©) (health status) and the Paediatric Pain Profile (PPP) (pain). Adverse events will be carefully monitored by a clinician masked to group allocation.DiscussionThis paper outlines the theoretical basis, study hypotheses and outcome measures for a trial of BoNT-A injections and therapy for children with non-ambulant CP.Trial registrationAustralia New Zealand Clinical Trials Registry:N12609000360213

Changes in Health-Related Quality of Life After Spinal Fusion and Scoliosis Correction in Patients With Cerebral Palsy

The literature is scarce on the impact of spinal fusion for scoliosis in patients with cerebral palsy (CP) regarding the health-related quality of life (HRQL). The purpose of this study was to evaluate the outcome of surgical scoliosis correction measured by the subjective change in the HRQL and the objective radiologic changes. Factors that could influence the subjective outcome were examined to investigate their correlation to the results of HRQL. A retrospective review of 50 consecutive patients with CP, who had spinal fusion for scoliosis with minimal 2-year follow-up was carried out. Radiographic data were obtained from preoperative, postoperative, and last follow-up examinations. The assessment of the HRQL was done through a modified version of the "Caregiver Priorities and Child Health Index of Life with Disabilities" questionnaire, assessed by the caregivers of the patients. There was a significant improvement (P = 0.001) of HRQL after the operation. The satisfaction rate of the patients with the outcome of the operation was 91.7%. There was an average of 64.3% scoliosis correction, 57.7% pelvic tilt correction, 53% improvement of apical vertebral rotation, and 67.2% improvement of apical vertebral translation. At the last follow-up, the average scoliosis angle was 32.0 degrees and pelvic tilt was 8.8 degrees. Weak but not significant correlation between the amount of scoliosis correction and the subjective change in the HRQL could be established (R = 0.321, P = 0.078). No correlation between the occurrence of complications and changes in the HRQL (P = 0.122) or the satisfaction rate with the outcome of the operation (P = 0.764) was found. Extension of spinal fusion to sacropelvis had no influence on the occurrence of complications (P = 0.42) or on the changes in HRQL (P = 0.71). Life quality improved after surgical scoliosis correction in patients with CP. There is a high satisfaction rate of patients and their caregivers. Subjective changes in HRQL after the operation do not correlate with objective radiographic changes brought about by the operation, which indicates that the present operation indications and achieved correction are adequate to achieve an improvement of the subjective HRQL in this patient group. Therapeutic level IV, retrospective study.

Improving quality of life of children with cerebral palsy: a systematic review of clinical trials

To systematically review the impact of different interventions on quality of life (QoL) for children with cerebral palsy. English articles were sought from five major English databases from inceptions until March 2010. Keywords used consisted of four components (and their variants): (i) clinical condition: cerebral palsy; (ii) outcome measures: quality of life, well-being; (iii) study design: clinical trials; and (iv) target population: people aged 0-18. Eight studies satisfied the inclusion criteria, all of which are of good to excellent quality (a Jadad score of 4 or above). The Pediatric Evaluation of Disability Inventory, the Pediatric Quality of Life Inventory, the TNO-AZL Children's Health-Related Quality of Life and the Caregiver Priorities and Child Health Index of Life with Disabilities were used to measure QoL. Significant positive results were reported by two studies using medicinal interventions (diazepam and intrathecal baclofen therapy, effect sizes 5.9, 9.1 respectively) and two studies employing motor control approach training (strength training and exercise training, former effect size being 3.8). Current review suggests that positive effect was shown in medicinal and motor control interventions on QoL. However, no single interventional approach can demonstrate a consistent positive impact on QoL across different studies. Future studies are recommended to (i) provide a clear definition of QoL, and investigate the relationship between symptoms' severity and QoL; (ii) measure outcome at different time points to capture real effects of interventions; and (iii) make more use of valid outcome instruments, either self-report or parent/caregiver proxy reports.

CPchild – caregiver priorities and child health index of live with disabilities – initial validation in a german cohort

CPchild – caregiver priorities and child health index of live with disabilities – initial validation in a german cohort