Social participation and health-related quality of life in adolescents with chronic musculoskeletal pain or chronic fatigue

Young people who are severely limited in their daily functioning due to chronic pain or fatigue receive treatment in the form of rehabilitation. Clinical changes during treatment can be determined quite easily by administering a quality of life survey. This dissertation found that a clinical rehabilitation approach proved successful for half of the participating young people. Boys, young people with severe symptoms, and young people who deal with their symptoms passively benefit the most from this treatment. Ten years after the treatment, two-thirds of this group (now young adults) still experience symptoms, but are able to function and participate reasonably well in society

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

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

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

<p>Abstract</p> <p>Background</p> <p>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.</p> <p>Methods and design</p> <p>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.</p> <p>Discussion</p> <p>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.</p> <p>Trial registration</p> <p>Dutch Trial Register NTR1926</p

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

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

Evaluating the cascade of care for hypertension in Sierra Leone

Objective: To assess the care for hypertension in Sierra Leone, by the use of a cascade-of-care approach, to identify where the need for healthcare system interventions is greatest. Methods: Using data from a nationwide household survey on surgical conditions undertaken in 1956 participants ≥18 years from October 2019 to March 2020, a cascade of care for hypertension consisting of four categories – hypertensive population, those diagnosed, those treated and those controlled – was constructed. Hypertension was defined as having a blood pressure ≥140/90 mmHg, or self-reported use of antihypertensive medication. Logistic regression analysis was used to investigate factors associated with undiagnosed hypertension. Results: The prevalence of hypertension was 22%. Among those with hypertension, 23% were diagnosed, 11% were treated and 5% had controlled blood pressure. The largest loss to care (77%) was between being hypertensive and receiving a diagnosis. Male sex, age and living in a rural location, were significantly associated with the odds of undiagnosed hypertension. There was no significant difference between men and women in the number of patients with controlled blood pressure. Adults aged 40 or older were observed to be better retained in care compared with those younger than 40 years of age. Conclusion: There is a significant loss to care in the care cascade for hypertension in Sierra Leone. Our results suggest that increasing awareness of cardiovascular risk and risk factor screening for early diagnosis might have a large impact on hypertension care