Newborns with myelomeningocele: their health-related quality of life and daily functioning 10 years later.

OBJECTIVE: Ten years ago, the authors reported on the outcome of their study investigating the degree of discomfort and pain in newborns with myelomeningocele (MMC), using the parameters of unbearable and hopeless suffering. In the current study, they investigated the quality of life, daily functioning, pain and fatigue, ability to communicate, and number of surgeries in the same cohort of patients. They subdivided their study population into severe (Lorber) and less severe (non-Lorber) cases and compared these cases with a healthy population (non-MMC group) and with each other. METHODS: The parents of 22 of 28 patients gave informed consent for this study. The KIDSCREEN-27 and PEDI-CAT (Pediatric Evaluation of Disability Inventory) were used to assess quality of life and daily functioning. Pain and fatigue were self-reported on a 10-point numeric rating scale. Communication and ambulation levels were determined using the Communication Function Classification System (CFCS) and the Hoffer ambulation scale. Using reference data from the KIDSCREEN-27 and PEDI-CAT, the authors created a healthy population comparison group. RESULTS: There was no significant difference in health-related quality-of-life (HRQOL) scores between Lorber and non-Lorber patients, except that school environment domain scores were lower in the Lorber group. When comparing the HRQOL of MMC patients with that of the non-MMC group, the physical well-being and parent relations and autonomy domains scored significantly lower. The daily functioning of MMC patients was lower on all domains of the PEDI-CAT compared with the non-MMC group. Lorber MMC patients scored lower on all domains of the PEDI-CAT when compared with non-Lorber patients. All patients were capable of communicating effectively; most patients (n = 18) were considered CFCS level I, and 4 patients were considered CFCS level II. CONCLUSIONS: This study shows that MMC is a severe, lifelong condition that affects patients' lives in many domains. All the patients in this study are capable of effective communication, irrespective of severity of MMC. Overall, the data show that in newborn MMC patients, future unbearable suffering with respect to pain, mobility, cognition, and communication is hard to predict and may not always occur.

Factors for changes in self-care and mobility capabilities in young children with cerebral palsy involved in regular outpatient rehabilitation care.

BACKGROUND: Assessing prognosis of self-care and mobility capabilities in children with cerebral palsy (CP) is important for goal setting, treatment guidance and meaningful professional-caregiver conversations. AIMS: Identifying factors associated with changes in self-care and mobility capabilities in regular outpatient multidisciplinary paediatric CP rehabilitation care. METHODS AND PROCEDURES: Routinely monitored longitudinal data, assessed with the Paediatric Evaluation of Disability Inventory (PEDI-Functional-Skills-Scale, FSS 0-100) was retrospectively analysed. We determined contributions of age, gross-motor function, bimanual-arm function, intellectual function, education type, epilepsy, visual function, and psychiatric comorbidity to self-care and mobility capability changes (linear-mixed-models). OUTCOMES AND RESULTS: For 90 children (53 boys), in all Gross-Motor-Function-Classification-System (GMFCS) levels, 272 PEDI's were completed. Mean PEDI-FSS-scores at first measurement (median age: 3,2 years) for self-care and mobility were 46.3 and 42.4, and mean final FSS-scores respectively were 55.1 and 53.1 (median age: 6,5 years). Self-care capability change was significantly associated with age (2.81, p < 0.001), GMFCS levels III-V (-9.12 to -46.66, p < 0.01), and intellectual impairment (-6.39, p < 0.01). Mobility capability change was significantly associated with age (3.25, p < 0.001) and GMFCS levels II-V (-6.58 to -47.12, p < 0.01). CONCLUSIONS AND IMPLICATIONS: Most important prognostic factor for self-care and mobility capabilities is GMFCS level, plus intellectual impairment for self-care. Maximum capability levels are reached at different ages, which is important for individual goal setting and managing expectations.

Pain Rehabilitation During Adolescence; Work in Adulthood? A Long-Term Follow-Up Study to Explore the Facilitators and Barriers for Work.

BACKGROUND: Adolescents with chronic musculoskeletal pain face different impairments in daily life. After an inpatient pain rehabilitation program, adolescents function better on several domains. The aim of this study was to explore the long-term work participation of adults who followed inpatient pain rehabilitation during adolescence because of chronic musculoskeletal pain and to identify potential facilitators and barriers regarding work in later life. METHODS: A mixed-methods study with standardized questionnaires and semi-structured interviews. The questionnaires measured pain, disability, work status, and the quality and quantity of the work. The interviews contained questions about work participation. Potential participants were all patients who had participated in an inpatient pain rehabilitation program 15 to 20 years previously. Analyses were performed by thematic analysis. Using the Sherbrooke model as guidance, themes were classified into 4 systems: healthcare, workplace, legislative/insurance, and personal. RESULTS: Fourteen patients consented to participate (12 females). Seventy-one percent of them had paid work. The mean self-reported quality of the work delivered was 9.6 (standard deviation = 0.5). Eighteen facilitators and 12 barriers regarding work participation later on in life were mentioned. The inpatient pain rehabilitation program was the most frequently mentioned facilitator (n = 5), while the personal system and coping-related factors were the most frequently mentioned barriers (n = 5). CONCLUSIONS: Ten out of 14 participants are currently working, most of them despite experiencing pain. Several factors based on the 4 systems of the Sherbrooke model contribute as facilitators or barriers regarding current work participation. Pain rehabilitation is mostly regarded as a facilitator for work participation later on in life.

Multidisciplinary Treatment for Adolescents with Chronic Pain and/or Fatigue: Who Will Benefit?

PURPOSE: The aims of this study were, first, to determine the percentage of adolescents with chronic pain/fatigue successfully treated with rehabilitation treatment for chronic pain/fatigue and, second, to identify predictors for a successful rehabilitation treatment. METHODS: Treatment success is scored based on a combination of predefined clinically relevant changes in 4 outcome measures: level of pain/fatigue, school absence, physical functioning, and psychosocial functioning. A forward stepwise logistic regression analysis with treatment success as a dependent variable is performed to identify predictors for successful treatment. RESULTS: A total of 172 adolescents (mean age 16.2 [SD = 2.5]; 85.5% girls) participated. Almost half (49.6%) of the adolescents had a successful treatment. The explained variance for the complete model explaining treatment success was 49% (R2 = 0.487). Patients with a higher level of pain/fatigue and a passive coping style pretreatment improved most, and these factors could thus be indicated as predictors for successful treatment. Also, gender significantly contributed to the prediction, in favor of boys. CONCLUSIONS: Regarding the first aim, using predefined treatment success based on clinically relevant changes, half of the participants had a successful treatment. Concerning the second aim, adolescents with a high level of pain/fatigue and those with a high passive coping style pretreatment have a better ability to change their functioning during treatment. Boys benefit more than girls.

Effects of a Guided Internet-Delivered Self-Help Intervention for Adolescents With Chronic Pain.

UNLABELLED: Cognitive-behavioral therapy (CBT) is effective in reducing the frequency and intensity of chronic pain in adolescents. However, CBT seems not to be considered acceptable by all adolescents. The main aim of our study was therefore to evaluate the effects of guided Internet-delivered self-help for adolescents with chronic pain. Adolescents (N = 69) were assessed on the outcome measures of pain, coping, disability, catastrophizing, rewarding of pain behavior by parents, and quality of life. Measures were taken 7 weeks before treatment and at pretreatment, posttreatment, and 3-month follow-up. Multilevel modeling was used for longitudinal analysis of the data. Pain intensity, interference caused by pain, rewarding of pain behavior by parents, and sleep problems significantly decreased during the intervention. The quality-of-life scores for pain, general behavior, mental health, family activities, and health changes also significantly improved during the intervention. With regard to coping, only problem-focused avoidance behavior significantly increased. No significant differences were found for pain-related disability and pain catastrophizing. Contrary to expectations, guided Internet-delivered self-help for chronic pain is difficult to use in adolescents, resulting in treatment attrition and loss to follow-up. TRIAL REGISTRATION: Dutch Trial Register NTR1926. PERSPECTIVE: The results of this trial suggest that Internet-based self-management is effective in decreasing pain intensity in adolescents with chronic pain. Because the intervention is grounded in CBT, we expect the underlying mechanism to be a change in self-management skills and in the ability of challenging dysfunctional thoughts.

Predicting outcome in a postacute stroke rehabilitation programme.

This study aims to evaluate and predict outcome as part of routine quality assessment of an inpatient stroke rehabilitation programme. By relating functional outcome to patient characteristics, including variables from the quality of life domain, we aim to find a set of variables that can be useful for prognosis, stratification and programme improvement. Data were collected, before and after rehabilitation, from a prospective quality registration database. Included were 250 patients in inpatient stroke rehabilitation after sustaining a first or recurrent ischemic or haemorrhagic stroke. Functional status was measured with the Barthel Index and the Academic Medical Centre Linear Disability Score. Health-related quality of life (HrQoL) was measured with the COOP/WONCA and the Nottingham Health Profile. Significant improvements were found on all outcome measures. A lower functional admission score, older age, more severe stroke, more pain and more negative emotional reactions on admission were found to be independent predictors of a lower outcome score, explaining 39.5% of its variance. Subjective (HrQoL) factors such as negative emotion and pain have an adverse effect on outcome of stroke rehabilitation, in addition to stroke severity, age and functional status at admission. These factors need to be taken into account in screening, clinical decision making and treatment design.

Early signaling, referral, and treatment of adolescent chronic pain: a study protocol.

BACKGROUND: Chronic pain is prevalent among young people and negatively influences their quality of life. Furthermore, chronic pain in adolescence may persist into adulthood. Therefore, it is important early on to promote the self-management skills of adolescents with chronic pain by improving signaling, referral, and treatment of these youngsters. In this study protocol we describe the designs of two complementary studies: a signaling study and an intervention study. METHODS AND DESIGN: The signaling study evaluates the Pain Barometer, a self-assessed signaling instrument for chronic pain in adolescents. To evaluate the feasibility of the Pain Barometer, the experiences of youth-health care nurses will be evaluated in semi-structured interviews. Also, we will explore the frequencies of referral per health-care provider. The intervention study evaluates Move It Now, a guided self-help intervention via the Internet for teenagers with chronic pain. This intervention uses cognitive behavioural techniques, including relaxation exercises and positive thinking. The objective of the intervention is to improve the ability of adolescents to cope with pain. The efficacy of Move It Now will be examined in a randomized controlled trial, in which 60 adolescents will be randomly assigned to an experimental condition or a waiting list control condition. DISCUSSION: If the Pain Barometer is proven to be feasible and Move It Now appears to be efficacious, a health care pathway can be created to provide the best tailored treatment promptly to adolescents with chronic pain. Move It Now can be easily implemented throughout the Netherlands, as the intervention is Internet based. TRIAL REGISTRATION: Dutch Trial Register NTR1926.

Perceived barriers to and facilitators of physical activity in young adults with childhood-onset physical disabilities.

OBJECTIVE: To explore the main barriers to and facilitators of physical activity in young adults with childhood-onset physical disabilities. DESIGN: Qualitative study using focus groups. PARTICIPANTS: Sixteen persons (12 men and 4 women) aged 22.4 (standard deviation 3.4) years, of whom 50% were wheelchair-dependent, participated in the study. Eight were diagnosed with myelomeningocele, 4 with cerebral palsy, 2 with acquired brain injury and 2 with rheumatoid arthritis. METHODS: Three focus group sessions of 1.5 h were conducted using a semi-structured question route to assess perceived barriers to and facilitators of physical activity. Tape recordings were transcribed verbatim and content analysed. According to the Physical Activity for People with a Physical Disability model, barriers and facilitators were subdivided into personal factors and environmental factors. RESULTS: Participants reported several barriers related to attitude and motivation. In addition, lack of energy, existing injury or fear of developing injuries or complications, limited physical activity facilities, and lack of information and knowledge, appeared to be barriers to physical activity. Fun and social contacts were mentioned as facilitators of engaging in physical activity, as well as improved health and fitness. CONCLUSION: Young adults with childhood-onset physical disabilities perceived various personal and environmental factors as barriers to or facilitators of physical activity. These should be taken into account when developing interventions to promote physical activity in this population.