Motor Development in Children with Cerebral Palsy in Sweden-A Population-Based Longitudinal Register Study.

The aim was to explore longitudinal motor development in children with cerebral palsy (CP) in Sweden with respect to the Gross Motor Function Classification System (GMFCS). In this national CP registry-based study, 2138 children aged 0.5-19 years participated (42% girls). The distribution with respect to GMFCS was I: 49%, II: 16%, III: 10%, IV: 14%, and V: 11%. In total, 5538 assessments (mean 2.7, min-max: 1-9) with the Gross Motor Function Measure-66 were included. Data were analysed using non-linear mixed-effects regression models, and the Stable Limit Model was selected to fit data. Five distinct curves of predicted gross motor development with respect to GMFCS levels were obtained. The achieved motor development was maintained over time. The estimated average GMFM-66 limit and the average age when 90% of the expected limits were reached were at GMFCS I: 88 at age 4.5; GMFCS II: 71 at age 4.2; GMFCS III: 54 at age 3.1; GMFCS IV: 38 at age 2.6, and at GMFCS V: 18 at age 0.9. In conclusion, this is the first national population-based study following motor development in CP. Five distinct curves reported in previous controlled research studies were confirmed. Our study adds knowledge about motor development captured in children's everyday context.

Preference-based patient participation for most, if not all: A cross-sectional study of patient participation amongst persons with end-stage kidney disease.

BACKGROUND: Patient participation is considered central for good healthcare. Yet, the concept is not fully understood when it comes to patients' experiences of participation in conjunction with their preferences, particularly in long-term healthcare. The aim of this study was to investigate the extent and variation of preference-based patient participation in patients with end-stage kidney disease (ESKD). METHODS: A cross-sectional study was conducted with 346 patients in renal care. The main variables were patients' preferences for and experiences of patient participation, determined using the Patient Preferences for Patient Participation tool, the 4Ps. Analyses identified the degree of match between preferences and experiences, that is, the preference-based patient participation measure. RESULTS: Overall, 57%-84% of the patients reached a sufficient level of preference-based patient participation on the items, while 2%-12% reached an insufficient level. A mismatch indicated either less or more participation than preferred; for example, 40% had less experience than preferred for taking part in planning, and 40% had more than preferred for managing treatment. CONCLUSION: This study shows that, although many patients reach a sufficient level of preference-based patient participation, this is not the case for all patients and/or attributes. Further opportunities for a mutual understanding of patients' preferences are needed for healthcare professionals to support person-centred patient participation. PATIENT OR PUBLIC CONTRIBUTION: The 4Ps is manufactured in collaboration with people with experience of the patient role, and persons living with ESKD were engaged in identifying their preferences and experiences of participation in renal care.

Abducted Standing in Children With Cerebral Palsy: Effects on Hip Development After 7 Years.

PURPOSE: The effects of abducted standing on hip migration percentage (MP) and range of hip and knee motion in children with cerebral palsy were studied for more than 7 years in 2 case-control groups. One group had adductor-psoas tenotomy and the other did not. METHODS: Case participants performed 15° to 30° of abduction per hip. Controls performed 0° to 10° of abduction and were matched on age, surgery, and follow-up time. RESULTS: Median MP decreased 7.0% in the participants without surgery, increased 6.5% in their matched participant, and decreased 3.5% in the participants who had adductor-psoas tenotomy. Migration percentage decreased 18% in participants who after surgery performed abducted standing. Range of motion was greater after surgery in participants who performed standing abduction. CONCLUSIONS: Standing abduction at 15° to 30° for 10 h/wk reduces MP and preserves range of motion for up to 7 years. This is a new contribution to research for children with cerebral palsy.

Context Factors Facilitating and Hindering Patient Participation in Dialysis Care: A Focus Group Study With Patients and Staff.

BACKGROUND: Safe health care of good quality depends on structured and unceasing efforts to progress, promoting strategies tailored to the context, including elements such as patients' preferences. Although patient participation is a common concept in health care, there is yet limited understanding of the factors that facilitate and hinder it in a healthcare context. AIMS: This paper identifies what patients and health professionals depict in terms of enablers and barriers for patient participation in dialysis care. METHODS: An explorative qualitative design was applied with seven focus group discussions with patients, staff, and managers across different types of hospitals, with the texts analyzed with content analysis. RESULTS: The dialysis context represents three key elements-people, resources, and interactions-that can both enable and hinder patient participation. Both barriers and facilitators for patient participation were found to reside at individual, team, and organizational levels, with a greater number of enabling factors implied by both patients and staff. LINKING EVIDENCE TO ACTION: While the dialysis context comprises opportunities for progress in favor of patient participation, a shared understanding of the concept is needed, along with how contextual factors can facilitate conditions for participation by patient preferences. In addition, the most favorable strategy for implementing person-centered care is not yet known, but to facilitate patient participation from a patient perspective, creating opportunities to enable staff and patients to share a common understanding is needed, along with tools to facilitate a dialogue on patient participation.

Patient participation in dialysis care-A qualitative study of patients' and health professionals' perspectives.

BACKGROUND AND OBJECTIVE: End-stage renal disease (ESRD) affects a multitude of aspects in the patient's daily life, often entailing their own involvement in various aspects of the treatment. Although patient participation is a core health-care value, what the concept signifies is not yet fully known. The purpose of this paper is to conceptualize patient participation in dialysis care, depicting patients' and health-care professionals' perspectives. DESIGN: This explorative study employed qualitative interviews and content analysis. SETTING AND PARTICIPANTS: Seven focus group discussions engaging 42 key informants were performed, including patients, staff and managers with experience of dialysis care. RESULTS: In dialysis care, patient participation connotes a sharing of information and knowledge, the learning of and planning of care, including partaking in shared decisions with regards to treatment and management, and being involved in the management of one's own health-care treatment and/or self-care activities. Although these attributes were illustrated by all stakeholders, their significance varied: patients suggested that their preferences regarding primary aspects of participation vary, while staff considered patients' performance of dialysis to be the ultimate form of participation. Further, while patients considered multiple ways to execute participation, staff suggested that aspects such as sharing information were a route to, rather than actual, involvement. CONCLUSIONS: Without a common understanding to denote the idea of patient participation, staff and patients are exposed to a potential deficit in terms of facilitating patient participation in everyday encounters of dialysis treatment. Further studies and means to serve a mutual understanding are needed.

Effect of weight-bearing in abduction and extension on hip stability in children with cerebral palsy.

PURPOSE: : To study the effect of 1 year of daily, straddled weight-bearing on hip migration percentage (MP) and muscle length in children with cerebral palsy who were nonambulatory. METHODS: : Participants stood upright in maximum tolerated hip abduction and hip and knee extension ½ to 1½ hours per day for 1 year. Controls, matched for age, motor ability, and surgery, were derived from a national cerebral palsy follow-up program. RESULTS: : Participants using straddled weight-bearing after surgery had the largest decrease in MP (n = 3, 20 controls; P = .026). Children using straddled weight-bearing at least 1 hour per day for prevention also improved (n = 8, 63 controls; P = .029). Hip and knee contractures were found only in controls. CONCLUSION: : Straddled weight-bearing, 1 hour per day, may reduce the MP after adductor-iliopsoas-tenotomies or prevent an MP increase and preserve muscle length in children with cerebral palsy who did not need surgery. Larger studies are needed to confirm the results.