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| 2. |
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| 3. |
- Almasri, Nihad A., et al.
(författare)
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Functional profiles of children with cerebral palsy in Jordan based on the association between gross motor function and manual ability
- 2018
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Ingår i: BMC Pediatrics. - : Springer Science and Business Media LLC. - 1471-2431. ; 18:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: Cerebral palsy (CP) is the most common cause of physical disability in childhood. A major challenge for delivering effective services for children with CP is the heterogeneity of the medical condition. Categorizing children into homogeneous groups based on functional profiles is expected to improve service planning. The aims of this study were to (1) to describe functional profiles of children with CP based on the Gross Motor Function Classification System-Expanded & Revised (GMFCS-E & R) and the Manual Ability Classification System (MACS); and (2) to examine associations and agreements between the GMFCS-E & R and the MACS for all participants then for subgroups based on subtypes of CP and chronological age of children. Methods: A convenience sample of 124 children with CP (mean age 4.5, SD 2.9years, 56% male) participated in the study. Children were classified into the GMFCS-E & R and the MACS levels by research assistants based on parents input. Research assistants determined the subtypes of CP. Results: Thirty six percent of the participants were able to ambulate independently (GMFCS-E & R levels I-II) and 64% were able to handle objects independently (MACS levels I-II). The most common functional profile of children with CP in our study is the "manual abilities better than gross motor function". An overall strong correlation was found between the GMFCS-E & R and the MACS (r s =.73, p<.001), the correlations vary significantly based on subtypes of CP and chronological age of children. A very strong correlation was found in children with spastic quadriplegia (r s =.81, p<.001), moderate with spastic diplegia (r s =.64, p<.001), and weak with spastic hemiplegia (r s =.37, p<.001). Conclusions: The GMFCS- E & R and the MACS provide complementary but distinctive information related to mobility and manual abilities of children with CP. Subtypes of CP and chronological age differentiated functional profiles. Functional abilities of children with CP in Jordan have similar patterns to children with CP in other countries. Functional profiles can inform clinicians, researchers, and policy makers.
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| 4. |
- Alriksson-Schmidt, Ann I, et al.
(författare)
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A combined surveillance program and quality register improves management of childhood disability
- 2017
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Ingår i: Disability and Rehabilitation. - : TAYLOR & FRANCIS LTD. - 0963-8288 .- 1464-5165. ; 39:8, s. 830-836
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: To describe a concept for prevention of secondary conditions in individuals with chronic neuromuscular disabilities by using two Swedish developed follow-up-programmes for cerebral palsy (CP; CPUP) and myelomeningocele (MMC; MMCUP) respectively as examples. Method: This paper describes and outlines the rationale, development and implementation of CPUP and MMCUP. Results: Both programmes are multidisciplinary longitudinal follow-up programmes that simultaneously serve as national registries. The programmes are population-based and set in Swedish habilitation clinics. Most children (95%) born 2000 or later with CP are enrolled in CPUP and the recruitment of adults is underway. CPUP has also been implemented in Norway, Denmark, Iceland, Scotland and parts of Australia. In MMCUP, almost all children with MMC born 2007 or later participate and individuals of all ages are now invited. The registries provide epidemiological profiles associated with CP and MMC and platforms for population-based research and quality of care improvement. Conclusions: Through multidisciplinary follow-up and early detection of emerging complications individuals with CP or MMC can receive less complex and more effective interventions than if treatment is implemented at a later stage. Possibilities and challenges to design, implement and continuously run multidisciplinary secondary prevention follow-up programmes and quality registries for individuals with CP or MMC are described and discussed.Implications for rehabilitationIndividuals with disabilities such as cerebral palsy or myelomeningocele are at risk of developing secondary conditions.Multidisciplinary population-based longitudinal follow-up programmes seem effective in preventing certain types of secondary conditions. IMPLICATIONS FOR REHABILITATION Individuals with disabilities such as cerebral palsy or myelomeningocele are at risk of developing secondary conditions. Multidisciplinary population-based longitudinal follow-up programmes seem effective in preventing certain types of secondary conditions.
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| 5. |
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| 6. |
- Andersson, Anna Karin
(författare)
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Everyday functioning in six year-old children born preterm : From a child perspective towards the child's perspective
- 2017
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The overall aim of the thesis was to explore everyday functioning in six year-old children born preterm, from the children’s perspectives and from their parents’ perspectives. The relation between everyday functioning and neonatal risk factors, behavioural characteristics was studied with descriptive and correlational statistics, ANOVA and multiple linear regression (I). Patterns of everyday functioning were explored in a cluster analysis following a person-oriented approach (II). In a mixed method approach, the children’s and their parents’ perceptions on children’s competence in everyday activities were explored with a pictorial instrument and analysed with descriptive statistics and qualitative content analysis (III). The children’s perceptions of meaningful everyday life situations were explored in a photo voice study, analysed with qualitative content analysis. In total, 144 children born preterm and 222 children born at term and their parents were involved.The results indicated that from the parents’ perspective most children born preterm and full-term were perceived with strong everyday functioning featuring strong motor, process and communication skills, a positive interaction pattern and low levels of behaviour problems. As a group, the children born very preterm were perceived weaker in their everyday functioning than the full-term group but the pattern of performance skills, interaction and behaviour varied similar to that of children born full-term. Further, it was found that preterm birth was not the main predictor, instead hyperactivity had most influence on everyday functioning. Moreover, the children born preterm perceived themselves to be overall strong performers of everyday activities. They wanted to be active and do things and for that they wanted to have skills and significant others i.e. siblings, parents, friends and pets to interact with and to feel safe and loved. Further, the children born preterm expressed a will to develop, improve and gain new skills and to have more opportunities to do meaningful things.In conclusion, the results in this thesis indicate that young children born preterm are able to reflect on their everyday functioning, and express needs and desires for their participation in meaningful everyday life situations. Moreover, preterm birth is not the sole predictor of everyday functioning more critical is the interaction of individual, behavioural and contextual factors.
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| 7. |
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Att arbeta med delaktighet inom habilitering
- 2015
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Samlingsverk (redaktörskap) (övrigt vetenskapligt/konstnärligt)abstract
- Delaktighet har kommit att bli ett samlingsbegrepp för hur samhället ska kunna möta alla människors röster och perspektiv. Inte minst inom habiliteringens olika verksamheter är det idag ett centralt begrepp. Denna antologi tar sin utgångspunkt i ett mångfacetterat habiliteringsperspektiv och presenterar nya synsätt på hur delaktighet kan förstås, hur det praktiskt används, men också hur det kan problematiseras utifrån ett flervetenskapligt och tvärprofessionellt perspektiv. Kapitlen har ett praktiknära perspektiv och presenterar forskning gjord i nära samarbete med verksamhetsområden inom habilitering. För både yrkesverksamma, studerande och forskare reser antologin ett antal centrala frågor: Vad menas med delaktighet och på vilket sätt kan jag skapa delaktighet för andra människor? Är jag beredd att dela mitt inflytande och ansvar? Men också frågor om vem det är som ska bestämma vad som är en tillräcklig delaktighet, när den inte är tillräcklig och för vem denna delaktighet är tänkt? Med andra ord, hur kan delaktighet bli på riktigt? Detta är frågor som inte alltid har ett självklart svar men som är viktiga att diskutera. Det är också frågor som synliggör den spännvidd det finns i begreppet delaktighet och som gör det både lockande och spännande att arbeta med. Att arbeta med delaktighet inom habilitering vänder sig till universitets- och högskolestudenter som fokuserar på habilitering och delaktighet i olika typer av utbildningar. Även yrkesverksamma inom exempelvis habilitering och rehabilitering liksom samhällsaktörer inom området får en värdefull introduktion till tvärprofessionella och flervetenskapliga perspektiv på delaktighet.
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| 8. |
- Björquist, E, et al.
(författare)
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Transitioning to Adulthood in Sweden: Comparing the Priorities of Immigrant Youths with Disabilities and Caregivers, from Middle-Eastern Countries
- 2018
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Ingår i: Research in Health Science. - : Scholink Co, Ltd.. - 2470-6205 .- 2470-6213. ; 3:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: There is limited knowledge about perceived challenges during the transition to adulthood among immigrant youths who are originally from Arabic-speaking countries but now residing in Sweden. Aim: The aim of this study was to describe self-identified problems encountered by immigrant youths with disabilities from Middle Eastern countries who were living in Sweden during their transition to adulthood and to compare these descriptions to the problems identified by their caregivers.Methods: Seventeen semi-structured interviews using the Canadian Occupational Performance Measure were conducted with 17 immigrant youths with intellectual disabilities aged 13-24 years and 16 caregivers, originally from Middle Eastern countries. The participants’ prioritized problems were categorized using the International Classification of Functioning, Disability and Health-Children & Youth Version, focusing on Activity and Participation.Results: A difference in priorities during transition was found when comparing the youths’ and the caregivers’ views. Most of the youths’ priorities were identified in the chapter “Major Life Area” about basic economic transactions and seeking employment, whilst the caregivers thought their youths’ prioritized “self-care”.Conclusion and implications for practice: Planning the best transition for immigrant youths with disabilities involves enabling them to identify their own preferences and needs while collaborating with caregivers and taking into consideration the cultural norms and traditions of collective caregiving.
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| 9. |
- Björquist, Elisabet, et al.
(författare)
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Immigrant Youths with Disabilities and Caregivers from the Middle-East—Challenges and Needs During Transition to Adulthood
- 2017
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Ingår i: Research in Health Science. - : Scholink Co, Ltd.. - 2470-6205 .- 2470-6213. ; 2:4, s. 363-384
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Tidskriftsartikel (refereegranskat)abstract
- Background: Recent years of research have increased the knowledge about how to support the transition to adulthood for youths with disabilities. In today’s multi-cultural societies knowledge about transitioning immigrant youths and their caregivers is still needed.Objective: To describe the expectations and needs of immigrant youths with disabilities residing in Sweden during their transition into adulthood as well as the expectations and needs of their caregivers, all of whom come from Arabic-speaking countries.Method: Structured interviews based on the Rotterdam Transition Profile (RTP) questionnaire were conducted with youths 16 to 24 years of age and with caregivers based on the Family Needs Survey (FNS).Results: Findings of interest were the youths´ dependence on parents for care demands and leisure activities, their need for information regarding future care and support and their concerns regarding future marriage. Caregivers’ felt unfamiliar with the term ‘intellectual disability’ and had a need for information about their youths’ condition and of available service for their children now and in the future.Conclusion: To prepare immigrant youths for future support, health care and habilitation services, it is important to enhance their autonomy. Immigrant families need culturally sensitive support and information, provided by designated professionals in their language of preference during the youths’ transition to adulthood.
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| 10. |
- Björquist, Elisabet, 1959-, et al.
(författare)
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Living in transition : experiences of healthand well-being and the needs of adolescents with cerebral palsy
- 2015
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Ingår i: Child Care Health and Development. - : Wiley. - 0305-1862 .- 1365-2214. ; 41:2, s. 258-65
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND:Transition to adulthood for adolescents in general is a multifaceted process, and for adolescents with cerebral palsy (CP) it also involves transition from child- to adult-oriented support. CP entails a variety and combination of disabilities, which in association with external factors may make the transition to adult health services difficult. The aim of this study was to gain a deeper understanding of how adolescents with CP experience their own health, well-being and need of support during their transition to adulthood.METHODS:An inductive qualitative approach was used based on interviews with 12 adolescents with CP aged 17-18 years and living in Sweden. Manifest and latent content analysis was used for the analysis of data.RESULTS:The results are described in the main theme 'Living in transition and looking forward to being an adult, but not feeling ready yet and being in need of further support'. Five subthemes highlight the adolescents' experiences of belonging to a family, of the importance of friends and love, of managing daily activities, being surrounded by support and having hopes for the future.CONCLUSIONS:Interviews with adolescents with CP provide valuable information for the planning of transition programmes and for the support of adolescents with disabilities who are in the transition to adult living. According to the adolescents in this study, the support should be flexible and not be fixed to biological age. Personal, individualized information and support was desired by the adolescents in order to be able to manage their own transition. One option to facilitate transition is the stepping-stone of being close to parents or staff members during the first phase, after leaving the parental home.
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| 11. |
- Björquist, Elisabet, et al.
(författare)
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Living in transition - experiences of health and well-being and the needs of adolescents with cerebral palsy.
- 2015
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Ingår i: Child: Care Health and Development. - : Wiley. - 1365-2214 .- 0305-1862. ; 41:2, s. 258-265
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Tidskriftsartikel (refereegranskat)abstract
- Transition to adulthood for adolescents in general is a multifaceted process, and for adolescents with cerebral palsy (CP) it also involves transition from child- to adult-oriented support. CP entails a variety and combination of disabilities, which in association with external factors may make the transition to adult health services difficult. The aim of this study was to gain a deeper understanding of how adolescents with CP experience their own health, well-being and need of support during their transition to adulthood.
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| 12. |
- Björquist, Elisabet, 1959-
(författare)
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Mind the gap : transition to adulthood – youths' with disabilities and their caregivers' perspectives
- 2016
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Transition to adulthood, referring to the process of moving from childhood to adulthood, can be a complex period for youths with disabilities who might need special support transitioning into an independent life as adults. Caregivers are significant persons for the youths, which is why their own health and wellbeing is important. Therefore the overall aim of this thesis was to gain a deeper understanding of health and wellbeing, challenges, preferences and needs during the transition from childhood to adulthood in youths with disabilities and their caregivers. The thesis is comprised of two studies, study A focusing on the perspectives of youths with CP (Paper I) and of their caregivers (Paper II) and Study B focusing on the perspectives of immigrant youths with disabilities and caregivers from Middle Eastern countries residing in Sweden (Paper III and IV). Study A had a qualitative approach and involved focus groups and individual interviews with 12 male and female youths, 17-18 years of age, with CP and various physical and cognitive levels of disabilities (Paper I), as well as 15 mothers and fathers (Paper II). The interviews were analysed using qualitative content analysis. In Study B, a combination of qualitative and quantitative methods was used. Based on structured and semi-structured questionnaires in combination with open ended questions interviews were conducted in Swedish or Arabic with 17 male and female youths, 13-24 years of age with various disabilities and 10 mothers, five fathers and one sibling. The families were all immigrants with Middle Eastern origin and most of them had lived in Sweden for more than five years. The questionnaires Family Need Survey (FNS), Rotterdam Transition Profile (RTP) and Canadian Occupational Performance Measure (COPM) were all translated and adapted to Swedish except for COPM where there already was a Swedish version. The results were analysed using mainly descriptive statistics and based on the framework of International Classification of Functioning, Disability and Health – Children & Youth Version (ICF-CY). The findings from study A showed that the experiences of youths and caregivers mostly concerned mental health and wellbeing described as both positive and negative experiences. Their family life was experienced as important, secure and convenient, which made the youths feel safe and gave parents a sense of meaningfulness. Youths described participation, socialising and love as being important, but also challenging and worrying. Caregivers experienced sorrow and anger and together with demanding logistics, planning and worrying, their health was affected negatively during their children's transition to adulthood. The findings from study B showed that youths were dependent on their caregivers for transportations, participating in leisure activities and socialising with friends. They were also dependent on their caregivers for the demanding of support and health care. The youths had few or no experiences of intimate relationships but felt that they were expected to get married in the future which worried them and their caregivers. Caregivers were uncomfortable with using the term intellectual disability. Caregivers needed help to understand their child's condition and to explain the child's condition to their wives/husbands. A significant difference was found in what problems youths identified with and what their caregivers identified as their youth's problems. The youths experienced problems with handling finances, transportations and seeking employment or daily activities whilst their caregiver thought their youth's primary problems involved self-care. The overall finding showed that to strengthen health and wellbeing in youths with disabilities and their caregivers and to meet challenges, preferences and needs during transition from childhood to adulthood both youths and caregivers need information and support. Both youths and caregivers expressed a desire for individualised support given by one person who could facilitate the transition period by coordinating information and give support based on individual preferences and needs. During the recruiting process in both studies, great challenges were experienced in finding participants. Collaboration with professionals in schools and leisure activities was found to be the most effective way to get in contact with immigrant youths and thereby also their caregivers. The findings from this thesis may enable professionals to develop and improve best practice guidelines for support, habilitation and health care in youths' transition. To facilitate for the youth to transfer from services with a family-centred approach to person-centred adult services, their autonomy must be strengthened by involving them in their own transition planning early on. Immigrant youths need special information and support about love and the freedom of choice to get married. The COPM and RTP are suggested to be used as tools in person-centred transition planning given they are used customized and applied with cultural sensibility. To enable those with communication limitations to give their independent voice the use of communication tools is necessary. Furthermore, the transition to person-centred adult support and health care should be flexible and not determined by biological age. However, youths need support by their caregivers who in turn might both need, and want, support for themselves and occasionally hands-on support. Guidance by a specially designated navigator aimed to support the whole family would be an option to meet individual needs. The information and support should be culturally sensitive with respect to various linguistic and cultural experiences. To close the gaps between systems of care collaboration was discussed to be necessary to facilitate the transition between support and health care for children and youths as well as services for adults. The use of ICF-CY as a framework for understanding needs and the standardised terminology in ICF-CY in documentation can facilitate this collaboration.
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| 13. |
- Björquist, Elisabet, 1959-, et al.
(författare)
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Parents’ Experiences of Health and Needs When Supporting Their Adolescents With Cerebral PalsyDuring Transition to Adulthood
- 2016
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Ingår i: Physical & Occupational Therapy in Pediatrics. - : Informa UK Limited. - 0194-2638 .- 1541-3144. ; 26:2, s. 2014-216
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Tidskriftsartikel (refereegranskat)abstract
- ABSTRACT. Aims: Parents are the primary support providers for adolescents with disabilities,their health and wellbeing is therefore of great importance when planning foryouths’ transition into adulthood. The aim of this study was to gain a deeper understandingof how parents of adolescents with cerebral palsy (CP) experience their ownhealth and wellbeing and their needs for support during the adolescent’s transition toadulthood. Methods: An inductive qualitative approach was used, including interviewswith 15 mothers and fathers to 10 adolescents with CP aged 17–18 years. Latent contentanalysis was used for analyzing the data. Results: Themain theme “Friction blisters chafingand healing during transition” illustrates the parents’ experiences. Five sub-themesformed the parents’ experiences of concerns along with sorrow and stress in life, worriesabout what was to come, their need for support, strategies for coping, and experiencesof cohesion. Conclusions: Knowledge of parents’ experiences of their health, wellbeing,and needs provide valuable information for the planning of transition for adolescentswith disabilities. Help with parents’ sorrow, stress, and worry in daily life might be facilitatedand parental health safeguarded by a navigator who can both guide and givehands-on support.
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| 14. |
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| 15. |
- Hansson, Kristofer, et al.
(författare)
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Flervetenskapliga perspektiv på delaktighet och habilitering
- 2015
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Ingår i: Att arbeta med delaktighet inom habilitering. - Lund : Studentlitteratur AB. - 9789144107547 ; , s. 11-31
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Bokkapitel (övrigt vetenskapligt/konstnärligt)abstract
- Delaktighet har kommit att bli ett samlingsbegrepp för hur samhället ska kunna möta alla människors röster och perspektiv. Inte minst inom habiliteringens olika verksamheter är det idag ett centralt begrepp. Denna antologi tar sin utgångspunkt i ett mångfacetterat habiliteringsperspektiv och presenterar nya synsätt på hur delaktighet kan förstås, hur det praktiskt används, men också hur det kan problematiseras utifrån ett flervetenskapligt och tvärprofessionellt perspektiv. Kapitlen har ett praktiknära perspektiv och presenterar forskning gjord i nära samarbete med verksamhetsområden inom habilitering. För både yrkesverksamma, studerande och forskare reser antologin ett antal centrala frågor: Vad menas med delaktighet och på vilket sätt kan jag skapa delaktighet för andra människor? Är jag beredd att dela mitt inflytande och ansvar? Men också frågor om vem det är som ska bestämma vad som är en tillräcklig delaktighet, när den inte är tillräcklig och för vem denna delaktighet är tänkt? Med andra ord, hur kan delaktighet bli på riktigt? Detta är frågor som inte alltid har ett självklart svar men som är viktiga att diskutera. Det är också frågor som synliggör den spännvidd det finns i begreppet delaktighet och som gör det både lockande och spännande att arbeta med. Att arbeta med delaktighet inom habilitering vänder sig till universitets- och högskolestudenter som fokuserar på habilitering och delaktighet i olika typer av utbildningar. Även yrkesverksamma inom exempelvis habilitering och rehabilitering liksom samhällsaktörer inom området får en värdefull introduktion till tvärprofessionella och flervetenskapliga perspektiv på delaktighet.
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| 16. |
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| 17. |
- Landegren, Nils, et al.
(författare)
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Autoantibodies Targeting a Collecting Duct-Specific Water Channel in Tubulointerstitial Nephritis
- 2016
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Ingår i: Journal of the American Society of Nephrology: JASN. - 1533-3450 .- 1046-6673. ; 27:10, s. 3220-3228
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Tidskriftsartikel (refereegranskat)abstract
- Tubulointerstitial nephritis is a common cause of kidney failure and may have diverse etiologies. This form of nephritis is sometimes associated with autoimmune disease, but the role of autoimmune mechanisms in disease development is not well understood. Here, we present the cases of three patients with autoimmune polyendocrine syndrome type 1 who developed tubulointerstitial nephritis and ESRD in association with autoantibodies against kidney collecting duct cells. One of the patients developed autoantibodies targeting the collecting duct-specific water channel aquaporin 2, whereas autoantibodies of the two other patients reacted against the HOXB7 or NFAT5 transcription factors, which regulate the aquaporin 2 promoter. Our findings suggest that tubulointerstitial nephritis developed in these patients as a result of an autoimmune insult on the kidney collecting duct cells.
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| 18. |
- Lauruschkus, Katarina, et al.
(författare)
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"It's fun, but …" Children with cerebral palsy and their experiences of participation in physical activities.
- 2015
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Ingår i: Disability and Rehabilitation. - : Informa UK Limited. - 0963-8288 .- 1464-5165. ; 37:4, s. 283-289
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Tidskriftsartikel (refereegranskat)abstract
- Abstract Purpose: To explore the experiences of children with cerebral palsy (CP) regarding participation in physical activities, and to describe facilitators and barriers. Methods: Sixteen children with CP 8-11 years old who varied in gross motor, cognitive and communicative function participated in either an individual interview or a focus group. Results: Two categories and 10 sub-categories emerged from the content analysis. The category "Being physically active, because …" describes facilitators for being physically active divided into the sub-categories "Enjoying the feeling", "Being capable", "Feeling of togetherness", "Being aware it is good for me", and "Using available opportunities". The second category "Being physically active, but …" describes barriers to being physically active, divided into the sub-categories "Getting tired and experiencing pain", "Something being wrong with my body", "Being dependent on others", "Not being good enough" and "Missing available opportunities". Conclusions: Asking children with CP about the physical activities they enjoy, and giving them the opportunity of trying self-selected activities with the right support is important for facilitating an increased participation in physical activities. Having fun with family and friends when being physically active, and enjoying the sensation of speed should be taken into consideration when designing interventions. When supporting children to become and remain physically active, attention should be paid to pain, fatigue and the accessibility of activities and locations. Implications for Rehabilitation Children want to be physically active together with friends or others. Children want to have fun and enjoy the sensation of speed when being physically active. Self-selected physical activities and the opportunity of trying new activities with the right support is essential for facilitating an increased participation in physical activities. Service planning and design may be facilitated by asking children about the physical activities they enjoy.
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| 19. |
- Lauruschkus, Katarina, et al.
(författare)
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Parents’ experiences of participation in physical activities for children with cerebral palsy – protecting and pushing towards independence
- 2017
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Ingår i: Disability and Rehabilitation. - : Informa UK Limited. - 0963-8288 .- 1464-5165. ; 39:8, s. 771-778
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: To explore how parents of children with cerebral palsy (CP) experience their child’s participation in physical activities and to identify facilitators and barriers for being physically active and reducing sedentary behaviour. Methods: Twenty-five parents of sixteen children, aged 8–11 years old with CP, with varying gross motor, cognitive and communicative functions and with different cultural backgrounds, participated in focus group or individual interviews. Content analysis was used for analysis. Results: Five subcategories addressing children’s participation in physical activity were found: “Belonging and taking space in the family”, “Important persons facilitating and hindering”, “Friends important but hard to get”, “Good for the body but challenging” and “Availability and opting out possibilities”. The subcategories built the main category “Protecting and pushing towards independence”, expressing the challenges parents experienced when their child wanted to be physically active. Conclusions: Parents desire competent persons to be available for support in participation in physical activities. They want support in finding friends for their child to be physically active with. Family culture and attitudes affect their child’s motivation for being physically active and should be taken into account when designing interventions for increased participation in physical activities and for reduced sedentary behaviour in children with disabilities.Implications for RehabilitationFriends and competent adults facilitate participation in physical activities and reduce sedentary behaviour.Information on accessible and tailored physical activities is an important facilitator for participation in physical activities.Service planning and design of interventions may be facilitated by taking the individual family culture into account.
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| 20. |
- Lauruschkus, Katarina, et al.
(författare)
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Participation in physical activities forchildren with cerebral palsy : feasibility andeffectiveness of physical activity onprescription
- 2017
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Ingår i: Archives of Physiotherapy. - : Springer Science and Business Media LLC. - 2057-0082. ; 17:13
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Tidskriftsartikel (refereegranskat)abstract
- Children with cerebral palsy (CP) are less physically active and more sedentary than other children which implies risk factors for their physical and mental health. Physical activity on prescription (PAP) is an effective intervention to promote a lifestyle change towards increased physical activity in adults in general. Knowledge is lacking about the use of PAP in children with CP. Therefore, the aim of this study was to evaluate the feasibility of PAP for children with CP and its effectiveness on participation in physical activity and sedentary behaviour.
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| 21. |
- Lundkvist, Annika, et al.
(författare)
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Functional performance in self-care and mobility after selective dorsal rhizotomy : a 10-year practice-based follow-up study.
- 2015
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Ingår i: Developmental Medicine & Child Neurology. - : Wiley. - 0012-1622 .- 1469-8749. ; 57:3, s. 286-293
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Tidskriftsartikel (refereegranskat)abstract
- AIM: To explore changes in performance in daily activities (self-care and mobility) 10 years after selective dorsal rhizotomy (SDR).METHOD: Twenty-four children with bilateral spastic cerebral palsy were followed; the median age at SDR was 4 years 1 month (range 2y 5mo-6y 4mo) and at 10-year follow-up was 14 years 6 months (range 12y 3mo-16y 9mo). The preoperative Gross Motor Function Classification System (GMFCS) levels were: I (n=1), II (n=7), III (n=4), IV (n=11), and V (n=1). The Pediatric Evaluation of Disability Inventory (PEDI) was used to assess performance in functional skills, caregiver assistance, and frequency of modifications and adaptive equipment (MAE) in self-care and mobility domains. Changes were analysed in relation to preoperative GMFCS levels, PEDI scores, and age at operation.RESULTS: All scores improved significantly (p<0.01) during the first 5 years in patients assigned to GMFCS levels I-III and IV-V. Between 5 years and 10 years, changes were seen in patients grouped in GMFCS levels I-III in the functional skills, mobility (p=0.04), caregiver assistance self-care (p=0.03), and caregiver assistance mobility (p=0.03) domains. Those grouped in GMFCS levels IV-V showed small changes between 5 years and 10 years after surgery. Changes were dependent on the preoperative GMFCS levels in all domains; caregiver assistance, self-care and mobility changes were dependent on preoperative values. The use of MAE increased in participants in GMFCS levels IV-V.INTERPRETATION: Children who underwent SDR and physiotherapy improved in functional performance in self-care and mobility and were more independent 10 years postoperatively.
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| 22. |
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| 23. |
- Magnusson, Charlotte, et al.
(författare)
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Användarmedverkan – att delta i designprocesser
- 2015
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Ingår i: Att arbeta med delaktighet inom habilitering. - 9789144107547
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Bokkapitel (refereegranskat)abstract
- Kopplingen mellan design, hållbarhet och delaktighet har kommit att bli allt starkare i samhället. Till stor del beror det på att större förhoppningar ställs till arkitektur, form och design för att uppnå ökad sammanhållning, inkludering och tillgänglighet för alla människor i samhället (Kulturdepartementet 2015). Genom att ratificera FN:s konvention om rättigheter för personer med funktionsnedsättning (prop. 2008/09:28) har Sverige uttryckt en vilja att bygga ett samhälle på inkluderande, universellt utformade produkter, varor och tjänster. En sådan strävan innebär att miljöer och produkter utformas så att de fungerar för så många som möjligt utan att särskilda anpassningar krävs. Design anses alltmer som en samhällsförändrande kraft som har potential att skapa nya förutsättningar för människor att kunna ta del i och bidra till samhället (Kulturdepartementet 2015). I samband med denna utveckling är det naturligt att fokusera på hur de designprocesser som leder fram till nya produkter, tjänster och miljöer kan göras mer inkluderande och öppnas upp för påverkan. I detta kapitel presenteras exempel på hur man kan arbeta med design tillsammans med dem som ska använda den, samt vad ett sådant arbetssätt kan ge.
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| 24. |
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| 25. |
- Nordmark, Eva, et al.
(författare)
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Hur blir delaktighet en helhet för barn och unga?
- 2015
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Ingår i: Att arbeta med delaktighet inom habilitering. - Lund : Studentlitteratur AB. - 9789144107547 ; , s. 33-45
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Bokkapitel (övrigt vetenskapligt/konstnärligt)abstract
- Delaktighet har kommit att bli ett samlingsbegrepp för hur samhället ska kunna möta alla människors röster och perspektiv. Inte minst inom habiliteringens olika verksamheter är det idag ett centralt begrepp. Denna antologi tar sin utgångspunkt i ett mångfacetterat habiliteringsperspektiv och presenterar nya synsätt på hur delaktighet kan förstås, hur det praktiskt används, men också hur det kan problematiseras utifrån ett flervetenskapligt och tvärprofessionellt perspektiv. Kapitlen har ett praktiknära perspektiv och presenterar forskning gjord i nära samarbete med verksamhetsområden inom habilitering. För både yrkesverksamma, studerande och forskare reser antologin ett antal centrala frågor: Vad menas med delaktighet och på vilket sätt kan jag skapa delaktighet för andra människor? Är jag beredd att dela mitt inflytande och ansvar? Men också frågor om vem det är som ska bestämma vad som är en tillräcklig delaktighet, när den inte är tillräcklig och för vem denna delaktighet är tänkt? Med andra ord, hur kan delaktighet bli på riktigt? Detta är frågor som inte alltid har ett självklart svar men som är viktiga att diskutera. Det är också frågor som synliggör den spännvidd det finns i begreppet delaktighet och som gör det både lockande och spännande att arbeta med. Att arbeta med delaktighet inom habilitering vänder sig till universitets- och högskolestudenter som fokuserar på habilitering och delaktighet i olika typer av utbildningar. Även yrkesverksamma inom exempelvis habilitering och rehabilitering liksom samhällsaktörer inom området får en värdefull introduktion till tvärprofessionella och flervetenskapliga perspektiv på delaktighet.
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| 26. |
- Nordmark, Sofi
(författare)
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Hindrances and Feasibilities that Affect Discharge Planning : Perspectives Before and After the Development and Testing of ICT Solutions
- 2016
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Deficits in collaboration and information exchange during patient discharge from the hospital can cause negative consequences for the patient, such as delayed discharge, readmission, inadequate post-discharge care, and reduced quality of life. Information and communication technology (ICT) can contribute to easing and securing information exchange and collaboration at care transitions from one care provider to another. The overall aim of this doctoral thesis was to gain broader knowledge about the discharge planning process by exploring the experiences of the involved personnel both before and after the development and testing of ICT solutions.Studies I, II and III were conducted before the development and testing of ICT solutions. In study I, the experiences and views of registered nurses (RNs) and district nurses (DNs) regarding information exchange during the discharge planning process (DPP) for patients who required primary healthcare after discharge from hospital were probed. Data were collected through a web based questionnaire and were analysed with descriptive statistics, chi-squared test and qualitative text analysis. In study II, the experiences and views of DNs and homecare organisers regarding the DPP were explored. Individual interviews were conducted with nine DNs and five homecare organisers working in homecare. Data were analysed via qualitative content analysis using an inductive approach. In study III, the DPP was evaluated. Qualitative data from studies I and II together with data the development process and 12 interviews with RNs in hospital care were analysed using Normalisation Process Theory. In study IV, RNs’, DNs’ and homecare organisers’ experiences with an agile development process that included ICT testing were explored. An evaluation form was used to collect data on the experiences of RNs and DNs using videoconference technology. Data were analysed with descriptive statistics. Seven focus group interviews were also performed with 11 RNs, nine DNs and four homecare organisers after the development and testing of ICT. Data were analysed using qualitative content analysis. The results showed significant differences in perceived information exchange (I). Hindrances and feasibilities at the organisational, group and individual levels all affected the workflow. Demands, workload, time, collaboration, and engagement together with knowledge and professional confidence were factors that influenced the DPP (II). The results revealed that the previously DPP was not normalised or embedded within daily work before the development project began (III). RNs, DNs and homecare organisers had reached consensus on what the process was about (coherence) and how they evaluated the process (reflexive monitoring) but not on who performed the process (cognitive participation) and how it was performed (collective action). By integrating an agile development process with the results obtained from studies I, II and III, ICT solutions aiming to support the DPP were tested in study IV. Study IV revealed that the time and timing both at the individual, group, and organisational levels and between those levels was essential for the development and adoption of new processes and products among caregivers. Keywords: discharge planning process, collaboration, information exchange, ICT, experiences, nurses, homecare organisers, qualitative content analysis, descriptive statistics
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| 27. |
- Sepulveda, Jorge I. Ramirez, et al.
(författare)
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Long-term follow-up in primary Sjögren's syndrome reveals differences in clinical presentation between female and male patients
- 2017
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Ingår i: Biology of Sex Differences. - : BioMed Central. - 2042-6410. ; 8
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Tidskriftsartikel (refereegranskat)abstract
- Background: Despite men being less prone to develop autoimmune diseases, male sex has been associated with a more severe disease course in several systemic autoimmune diseases. In the present study, we aimed to investigate differences in the clinical presentation of primary Sjogren's syndrome (pSS) between the sexes and establish whether male sex is associated with a more severe form of long-term pSS. Methods: Our study population included 967 patients with pSS (899 females and 68 males) from Scandinavian clinical centers. The mean follow-up time (years) was 8.8 +/- 7.6 for women and 8.5 +/- 6.2 for men (ns). Clinical data including serological and hematological parameters and glandular and extraglandular manifestations were compared between men and women. Results: Male patient serology was characterized by more frequent positivity for anti-Ro/SSA and anti-La/SSB (p = 0. 02), and ANA (p = 0.02). Further, men with pSS were more frequently diagnosed with interstitial lung disease (p = 0. 008), lymphadenopathy (p = 0.04) and lymphoma (p = 0.007). Conversely, concomitant hypothyroidism was more common among female patients (p = 0.009). Conclusions: We observe enhanced serological responses and higher frequencies of lymphoma-related extraglandular manifestations in men with pSS. Notably, lymphoma itself was also significantly more common in men. These observations may reflect an aggravated immune activation and a more severe pathophysiological state in male patients with pSS and indicate a personalized managing of the disease due to the influence of the sex of patients with pSS.
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| 28. |
- Stahlhut, Michelle, et al.
(författare)
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Building the repertoire of measures of walking in Rett syndrome
- 2017
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Ingår i: Disability and Rehabilitation. - : Informa UK Limited. - 0963-8288 .- 1464-5165. ; 39:19, s. 1926-1931
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Tidskriftsartikel (refereegranskat)abstract
- Background: The repertoire of measures of walking in Rett syndrome is limited. This study aimed to determine measurement properties of a modified two-minute walk test (2MWT) and a modified Rett syndrome-specific functional mobility scale (FMS-RS) in Rett syndrome. Methods: Forty-two girls and women with Rett syndrome (median 18.4 years, range 2.4–60.9 years) were assessed for clinical severity, gross motor skills, and mobility. To measure walking capacity, 27 of this group completed a 2MWT twice on two different assessment days. To assess walking performance, the FMS-RS was administered to the total sample of parents (n = 42) on two occasions approximately one week apart. Results: There were negative correlations between clinical severity and 2MWT (r = −0.48) and FMS-RS (r = −0.60–0.66). There were positive correlations between gross motor skills and mobility and 2MWT (r = 0.51, 0.43) and FMS-RS (r = 0.71–0.93, 0.74–0.94), respectively. Test–retest reliability for the 2MWT was good with high intraday and interday correlations (ICC = 0.86–0.98). For the 2MWT, the standard error of measurement was 13.8 m and we would be 95% confident that changes greater than 38 m would be greater than within subject error. There was good test–retest reliability for all three distances on the FMS-RS (ICC = 0.94–0.99). Conclusions: Walking capacity as measured by the 2MWT showed expected but limited relationships with measures of different constructs, providing some support for concurrent validity. Walking performance as measured with the FMS-RS was more strongly consistent with other clinical measures supporting its concurrent validity. Test–retest reliability was good for both the FMS-RS and the 2MWT. Therefore, these measures have the potential to be used in clinical practice and research. Implications for RehabilitationWalking is one of the commonest daily physical activities in ambulant girls and women with RTT. Comprehensive knowledge about the walking abilities in this population is limited.Evidence of validity and test–retest reliability have been demonstrated for the modified two-minute walk test (2MWT) and the Rett syndrome-specific functional mobility scale (FMS-RS).The 2MWT and FMS-RS offer detailed information of the capacity and performance of walking, respectively, in girls and women with RTT
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| 29. |
- Stahlhut, Michelle, et al.
(författare)
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Facilitators and Barriers of Participation in “Uptime” Activities in Girls and Women With Rett Syndrome : Perspectives From Parents and Professionals
- 2019
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Ingår i: Qualitative Health Research. - : SAGE Publications. - 1049-7323 .- 1552-7557. ; 29:4, s. 609-619
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Tidskriftsartikel (refereegranskat)abstract
- Rett syndrome (RTT) is a rare neurodevelopmental disorder usually affecting females. It is associated with intellectual and multiple disabilities leading to a high level of dependency in all aspects of daily living including participation in physical activities. This study explored facilitators and barriers to “uptime” (non-sedentary) activities in Danish girls and women with RTT as perceived by parents and professionals using focus groups. Through thematic analysis, one central theme emerged: a constant balance to do the best thing for the girl or woman. Within the central theme, five subthemes of facilitators and barriers were identified relating to the individual and the physical, organizational, social, and attitudinal environments. Environmental barriers can be reduced through policy and management-level changes in health promotion and strong advocacy of physical activity by health professionals. Targeting both facilitators and barriers of “uptime” activities enables the planning and implementing of health-promoting interventions in individuals with RTT.
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| 30. |
- Stahlhut, Michelle, et al.
(författare)
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Patterns of sedentary time and ambulatory physical activity in a Danish population of girls and women with Rett syndrome
- 2019
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Ingår i: Disability and Rehabilitation. - : Informa UK Limited. - 0963-8288 .- 1464-5165. ; 41:2, s. 133-141
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Tidskriftsartikel (refereegranskat)abstract
- Background: Rett syndrome (RTT) is a rare neurodevelopmental disorder leading to multiple disabilities and high dependency on caregivers. This study aimed to: (1) describe the patterns of sedentary time and daily steps and (2) identify the association of individual and environmental characteristics with sedentary time. Methods: All Danish females with RTT older than 5 years of age and with a MECP2 mutation were invited to participate. The activPAL and StepWatch Activity Monitor (SAM) were worn by participants for at least four days. Sedentary time and step counts were plotted by time to examine daily activity patterns. Associations between sedentary time and individual and environmental covariates were assessed with linear regression models. Results: The median (interquartile range) age of participants was 22.0 (14.3–36.5) years. On average 83.3% (standard deviation 13.9%) of waking hours were spent in sedentary behaviours (n = 48) and the median (interquartile range) daily step count was 5128 (2829–7704) (n = 28). Females older than 33.5 years, and those unable to walk independently were more sedentary. Conclusions: This study demonstrated high levels of sedentary time and low daily step counts in a Danish population of females with RTT. Advancing age and lower walking skills were associated with higher levels of sedentary time.Implications for RehabilitationSedentary lifestyles in individuals with disabilities have a negative impact on health and quality of life.High levels of sedentary time and low daily step counts were demonstrated in a Danish population of females with Rett syndrome.Advancing age and inability to walk independently were strongly associated with higher levels of sedentary time in females with Rett syndrome.Understanding patterns of sedentary behaviour and physical activity can aid health care professionals in developing health-promoting physical activity interventions.
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| 31. |
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| 32. |
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| 33. |
- Vasaitis, Lilian, et al.
(författare)
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Comparison of patients with and without pre-existing lymphoma at diagnosis of primary Sjögren's syndrome
- 2019
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Ingår i: Scandinavian Journal of Rheumatology. - : Informa UK Limited. - 0300-9742 .- 1502-7732. ; 48:3, s. 207-212
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: In the 2016 American College of Rheumatology/European League Against Rheumatism classification criteria for primary Sjögren's syndrome (pSS), pre-existing lymphoma is not an exclusion criterion for pSS diagnosis, as in earlier criteria. We aimed to explore whether there are differences between pSS patients with and without pre-existing lymphoma at pSS diagnosis.METHOD: Patients with ICD-7-10 codes for Sjögren's syndrome (SS) and a diagnosis of malignant lymphoma before or after SS diagnosis were identified by linking the Swedish Patient Register 1964-2007 with the Cancer Register 1990-2007 (n = 224). Clinical data were collected from medical records. Lymphoma diagnoses were evaluated by tissue review. Characteristics of pSS patients with and without pre-existing lymphoma were compared.RESULTS: We identified 107 patients with pSS as the reason for an SS diagnosis code and a verified lymphoma. Of these, 18 (17%) had a pre-existing lymphoma at pSS diagnosis, defined as lymphoma diagnosed before or within 6 months of pSS diagnosis. Male gender (39% vs 10%, p = 0.006), enlarged lymph nodes during the pSS disease (61% vs 27%, p = 0.01), mucosa-associated lymphoid tissue (MALT) lymphoma (50% vs 22%, p = 0.02), and salivary gland lymphoma (61% vs 26%, p = 0.006) were more common in patients with a pre-existing lymphoma at pSS diagnosis. Other pSS characteristics were similar.CONCLUSION: In a substantial proportion of patients, particularly in men, pSS remains undiagnosed until after lymphoma diagnosis. The study highlights the importance of pSS investigation in patients with lymphoma, especially MALT lymphoma, in the salivary glands.
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| 34. |
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| 35. |
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| 36. |
- Vasaitis, Lilian, et al.
(författare)
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Sporadic occurrence of non-diagnosed IgG4-related disease in lymphoma patients with a previous Sjögren's syndrome diagnosis.
- 2016
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Ingår i: Acta Oncologica. - 0284-186X .- 1651-226X. ; 55:9-10, s. 1139-1144
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: IgG4-related disease (IgG4-RD) is a recently recognized fibro-inflammatory disorder, which may affect many organs, and often comes to clinical attention due to tumor-like organ swelling or is identified incidentally by specific biopsy findings. Typical histopathology of IgG4-RD is lymphoplasmacytic infiltration rich in IgG4 + plasma cells (PCs), storiform fibrosis, and obliterative phlebitis. Patients with sicca symptoms can be misdiagnosed as primary Sjögren's syndrome (pSS) instead of IgG4-RD because of clinical and histopathological similarities. Moreover, an association with lymphoma development is described in both diseases. This study investigated signs of IgG4-RD in a population-based cohort of patients diagnosed with pSS complicated by lymphoma.METHODS: Patients with pSS and lymphoma diagnoses and available lymphoma specimens were identified by linkage with the Swedish Patient Register 1964-2007 and the Cancer Register 1990-2007 (n = 79). Clinical data and lymphomas were reviewed and the diagnoses evaluated. All lymphoma tissues and available minor salivary gland biopsies (n = 11) were immunostained for IgG4 + PCs and evaluated for other histopathological signs of IgG4-RD. In a case with specific findings of IgG4-RD, other available tissue specimens of the same patient were investigated for IgG4-RD.RESULTS: Only one patient of 79 (1.3%) had >10 IgG4 + PCs/high power field (HPF) in the lymphoma tissue, an unspecified low-grade B-cell lymphoma localized in the submandibular gland. This patient also had other histopathological features of IgG4-RD in the lymphoma and a surgical lung biopsy taken five years before lymphoma diagnosis and, therefore, fulfilled the criteria for IgG4-RD. Occasional IgG4 + PCs (<10/HPF) without signs of IgG4-RD were observed in another six lymphomas. No IgG4 + PCs were identified in the minor salivary gland biopsies.CONCLUSION: Histopathological findings of IgG4-RD may co-exist with low malignant B-cell lymphoma in patients with initially suspected pSS and may be associated with an underlying IgG4-RD.
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| 37. |
- Weissenberg, Sarah Y., et al.
(författare)
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Identification and Characterization of Post-activated B Cells in Systemic Autoimmune Diseases
- 2019
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Ingår i: Frontiers in Immunology. - : Frontiers Media SA. - 1664-3224. ; 10
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Tidskriftsartikel (refereegranskat)abstract
- Autoimmune diseases (AID) such as systemic lupus erythematosus (SLE), primary Sjogren's syndrome (pSS), and rheumatoid arthritis (RA) are chronic inflammatory diseases in which abnormalities of B cell function play a central role. Although it is widely accepted that autoimmune B cells are hyperactive in vivo, a full understanding of their functional status in AID has not been delineated. Here, we present a detailed analysis of the functional capabilities of AID B cells and dissect the mechanisms underlying altered B cell function. Upon BCR activation, decreased spleen tyrosine kinase (Syk) and Bruton's tyrosine kinase (Btk) phosphorylation was noted in AID memory B cells combined with constitutive co-localization of CD22 and protein tyrosine phosphatase (PTP) non-receptor type 6 (SHP-1) along with hyporesponsiveness to TLR9 signaling, a Syk-dependent response. Similar BCR hyporesponsiveness was also noted specifically in SLE CD27-B cells together with increased PTP activities and increased transcripts for PTPN2, PTPN11, PTPN22, PTPRC, and PTPRO in SLE B cells. Additional studies revealed that repetitive BCR stimulation of normal B cells can induce BCR hyporesponsiveness and that tissue-resident memory B cells from AID patients also exhibited decreased responsiveness immediately ex vivo, suggesting that the hyporesponsive status can be acquired by repeated exposure to autoantigen(s) in vivo. Functional studies to overcome B cell hyporesponsiveness revealed that CD40 co-stimulation increased BCR signaling, induced proliferation, and downregulated PTP expression (PTPN2, PTPN22, and receptor-type PTPs). The data support the conclusion that hyporesponsiveness of AID and especially SLE B cells results from chronic in vivo stimulation through the BCR without T cell help mediated by CD40-CD154 interaction and is manifested by decreased phosphorylation of BCR-related proximal signaling molecules and increased PTPs. The hyporesponsiveness of AID B cells is similar to a form of functional anergy.
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| 38. |
- Westbom, Lena, et al.
(författare)
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Assessments of pain in children and adolescents with cerebral palsy : A retrospective population-based registry study
- 2017
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Ingår i: Developmental Medicine and Child Neurology. - : Wiley. - 0012-1622. ; 59:8, s. 858-863
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Tidskriftsartikel (refereegranskat)abstract
- Aim: To explore pain screening in CPUP, a follow-up surveillance programme for people with cerebral palsy (CP), specifically to describe reported pain prevalence, localizations, patterns of distribution; to compare with studies using psychometrically sound assessment instruments; and to assess agreement between pain documented in CPUP and medical records. Method: Registry study of a population with CP, born 1993 to 2008, living in Skåne, Sweden in 2013. Descriptive data, cross-tabulations, and chi-square tests to characterize and compare the study groups. Kappa analysis to test the concordance between register and medical record reports on pain. Results: Pain was reported by 185 out of 497 children (37%; females 40%, males 35%). Level V in both Gross Motor Function Classification System (GMFCS) and Manual Ability Classification System (MACS) was associated with highest prevalence of pain (50% and 54%), and level I with lowest prevalence of pain (30% and 32%). Pain was most frequent in dyskinetic CP (46%) and least frequent in unilateral spastic CP (33%). Feet and knees were the dominant localizations. Fair-moderate agreement (kappa 0.37, prevalence-adjusted bias-adjusted kappa [PABAK] 0.44) was found between documented pain in CPUP and medical records, although more seldom recognized in medical records. Interpretation: The distribution of pain between CP subtypes, functional levels, sex, and age in CPUP is concordant with previous population-based studies, indicating the validity of the CPUP pain screening. Despite this, further clinical evaluation with extended pain assessments and pain management were largely neglected in children reporting chronic pain.
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