BACKGROUND: Adolescent idiopathic scoliosis (AIS) surgery is the most common reason for elective pediatric orthopaedic surgery. Minimization of adverse events is an important goal. Institute of Medicine (IOM) outlined 6 facets of healthcare quality improvement within the acronym STEEEP. Two of these facets, Safety and Timeliness for AIS surgery in Canada, are examined in this thesis. METHODS: A three - part study, using clinical records at the largest Canadian pediatric hospital and CIHI national administrative data, determined i) the relationship between surgical wait times and rates of adverse events, along with determination of an empirically derived access target, ii) accuracy of ICD-10 coding of surgical AIS cases along with an optimal search strategy to identify surgical AIS cases, and iii) the volume – outcome relationships for scoliosis surgery using hierarchical and conventional single level multi-variate regression analysis. RESULTS: Access target of 3 months minimized the adverse events related to waiting. Optimal search strategy for AIS surgical cases using ICD-10 coding required combination of codes as each code in isolation was inaccurate due to limitations in coding definitions. There was no significant volume – outcome relationship using appropriate modeling strategies. CONCLUSIONS: Ensuring timeliness of surgical treatment of less than 3 months is important in surgical cases of AIS given the potential for curve progression in higher risk individuals who are skeletally immature with large magnitude curves at time of surgical consent. At the administrative database level, knowledge of coding accuracy and optimal search strategies are needed to capture a complete cohort for analysis. In AIS, several ICD-10 codes need to be combined. AIS surgery cases captured through this optimal search strategy, revealed no significant volume-outcome relationships with appropriate modeling. Based on these results, minimum volume thresholds and regionalization of care for AIS surgery does not appear to be justified. However, a larger sample size was needed to determine whether there was a clinically significant difference in wound infection and blood transfusion rates. Furthermore, clinical variables, not part of an administrative database such as curve pattern were not included.

Mémoire numérisé par la Division de la gestion de documents et des archives de l'Université de Montréal

BACKGROUND: Adolescent idiopathic scoliosis (AIS) surgery is the most common reason for elective pediatric orthopaedic surgery. Minimization of adverse events is an important goal. Institute of Medicine (IOM) outlined 6 facets of healthcare quality improvement within the acronym STEEEP. Two of these facets, Safety and Timeliness for AIS surgery in Canada, are examined in this thesis. METHODS: A three - part study, using clinical records at the largest Canadian pediatric hospital and CIHI national administrative data, determined i) the relationship between surgical wait times and rates of adverse events, along with determination of an empirically derived access target, ii) accuracy of ICD-10 coding of surgical AIS cases along with an optimal search strategy to identify surgical AIS cases, and iii) the volume – outcome relationships for scoliosis surgery using hierarchical and conventional single level multi-variate regression analysis. RESULTS: Access target of 3 months minimized the adverse events related to waiting. Optimal search strategy for AIS surgical cases using ICD-10 coding required combination of codes as each code in isolation was inaccurate due to limitations in coding definitions. There was no significant volume – outcome relationship using appropriate modeling strategies. CONCLUSIONS: Ensuring timeliness of surgical treatment of less than 3 months is important in surgical cases of AIS given the potential for curve progression in higher risk individuals who are skeletally immature with large magnitude curves at time of surgical consent. At the administrative database level, knowledge of coding accuracy and optimal search strategies are needed to capture a complete cohort for analysis. In AIS, several ICD-10 codes need to be combined. AIS surgery cases captured through this optimal search strategy, revealed no significant volume-outcome relationships with appropriate modeling. Based on these results, minimum volume thresholds and regionalization of care for AIS surgery does not appear to be justified. However, a larger sample size was needed to determine whether there was a clinically significant difference in wound infection and blood transfusion rates. Furthermore, clinical variables, not part of an administrative database such as curve pattern were not included.

I Sverige drabbas varje år ca 200-250 barn och ungdomar av sjukdomen juvenil idiopatisk artrit (JIA). JIA är en av de vanligaste orsakerna till kortvarig och långvarig funktionsnedsättning och försämring av livskvalitet under barnaåren. Hela familjen påverkas när en familjemedlem blir sjuk. Syfte: Syftet med denna studie var att belysa hur en långvarig sjukdom som JIA upplevs av barn, ungdomar och deras familjer. Metod: Metoden som användes var en allmän litteraturöversikt. Totalt inkluderades 7 kvantitativa och 5 kvalitativa artiklar. Resultat: Vid analysen identifierades ett huvudtema upplevelser av att vara annorlunda. Resultatet visar att upplevelserna av att leva med JIA är mycket individuella men gemensamt för många av familjerna är en känsla av att vara annorlunda. Konklusion: När ett barn eller ungdom drabbas av en långvarig sjukdom påverkas hela familjen. Livssituationen förändras, även föräldrarnas och syskonens livsvärld blir förändrad. Varje barn och ungdom som drabbas av sjukdomen JIA är unik och har sin egen livsvärld. Som sjuksköterska är det betydelsefullt att se hela individen och involvera dess familj i omvårdnaden. / In Sweden 200-250 children and youths are affected with juvenile idiopathic arthritis (JIA) every year. JIA is one of the most common causes of short-term and long-term disability and impairment of quality of life during childhood. The entire family is affected when a family member becomes ill. Aim: The aim with this study was to illustrate how a prolonged disease as JIA is experienced by children, youths and their families. Method: The method used was a general literature overview. In total 7 quantitative and 5 qualitative articles. Result: During analysis one main themes were identified. This was experiences of being different. The result showed that the experiences of living with JIA is individual but common for many of the families is a sense of being different. Conclusion: When a child or youth is struck by protracted disease, this also affects family members. The life situation is affected, and also the life situation for parents, brothers and sisters is changed. Every child and youth who is affected by JIA is unique, and has its own reality. As a nurse it is meaningful to see the entire individual, and to involve its family in to the nursing.

Juvenile idiopathic arthritis (JIA) is a chronic rheumatic disease associated with pain, stiffness and increased psychosocial burden. The purpose of this study was to investigate through an ABAB single-case design the impact of a yoga intervention on pain and morning stiffness in adolescent females with JIA. A secondary aim was to assess the impact of this intervention on self-efficacy, mindfulness, and health-related quality of life (HRQOL). Two adolescents with JIA participated in three yoga groups and daily home yoga practice with a DVD. Participants engaged in daily self-monitoring of pain and stiffness and completed questionnaires assessing psychosocial functioning at pre- and post-intervention. A three-month follow-up on primary and secondary measures was conducted. Primary outcomes were evaluated using visual inspection and the conservative dual criterion (CDC) method. Results suggested that for one participant, there were no overall systematic changes in pain or stiffness as a result of the intervention; however, trends toward changes in pain were present during the final phases of the study. For the second participant, systematic changes were observed across most but not all phases for morning stiffness, whereas results for pain were less consistent. Modest changes were revealed on secondary outcome measures; however, not consistently in the direction of hypotheses. Lack of stable baseline data for both participants was a significant limitation of the study and is discussed. More research is needed to determine if the yoga intervention utilized in this study is an effective method for reducing pain and stiffness and enhancing psychosocial functioning in adolescent girls with JIA.

Cerebrospinal fluid (CSF) infusion tests can be used to estimate the dynamic properties of the CSF system. Idiopathic normal pressure hydrocephalus (INPH) is a syndrome signified by a disturbance to the CSF system, where the cause is unknown and the diagnosis is difficult to determine. As an aid in identifying patients with INPH who will improve after shunt surgery, infusion tests are commonly used to determine the outflow conductance (Cout), or outflow resistance (Rout=1/Cout), of the CSF system. The tests are also used to determine shunt function in vivo. The general aim of this thesis was to develop and validate CSF infusion methods, to investigate the dynamics of the CSF system. The methods should be applicable to patients with INPH, to aid in the quest to further improve the diagnosis and management of this syndrome. An existing mathematical model describing the dynamics of the CSF system was further developed. The characteristics of the model were verified and the effect of expanding intracranial air on the intracranial pressure (ICP) was simulated. The simulations supported the recommendation to maintain sea-level pressure during air ambulance transportation of patients with suspected intracranial air. A recently developed infusion apparatus was evaluated, on an experimental model as well as on a patient material. The repetitiveness in estimating Cout was found to be good. A statistically significant difference was found between the repeated Cout estimations in the patient group, indicating that there might have been a small physiological change introduced during the infusion test. A parameter, ∆Cout, was proposed and evaluated. It proved to reflect the reliability of individual Cout investigations in a clinically useful way, as well as to provide easily interpreted information. An adaptive algorithm for assessment of Cout was developed and evaluated on a patient group. The new algorithm was shown to reduce the investigation time, from 60 minutes, by 14.3 ± 5.9 minutes (mean ± SD), p<0.01, without reducing the reliability of the estimated Cout below clinically relevant levels. The relationship between ICP and CSF outflow was studied in a group of patients investigated for INPH. It was found that in the range of moderate increase from baseline pressure, the assumption of a pressure independent Rout was confirmed (p=0.5). However, at larger pressure increments, the relationship had a non-linear tendency (p<0.05). This indicates that the traditional view of a pressure independent Rout might have to be questioned in the region where ICP exceeds baseline pressure too much. Infusion tests can be performed in different ways, where three main categories may be distinguished. The bolus infusion method was compared to the constant pressure and constant flow infusion methods, on an experimental model as well as on a patient material. When physiological pressure fluctuations were added to the model, significant differences were found in the determination of Cout in the range of clinical importance, i.e. low Cout (p<0.05). The finding was supported by the patient investigations, the difference was however not significant. With the application of the new methods developed in this thesis, and the increased knowledge concerning relationships between CSF dynamic parameters, the CSF infusion test was further improved with the ability to increase measurement reliability in a reduced time. This constitutes a good basis to perform a large multi-centre study with the main goal to determine the predictive value of the parameter Cout.

Varje år diagnostiseras cirka 200 barn med juvenil idiopatisk artrit (JIA) i Sverige. Det är inte bara inom specialistvården sjuksköterskor möter barn med JIA, utan även inom allmän sjukvård. Syftet med studien var att belysa omvårdnad för barn med juvenil idiopatisk artrit. Studien är en litteraturstudie. Resultatet belyser vad som är viktigt vid omvårdnaden för barn med JIA. Detta presenteras i tre teman: Bemötande, Information och undervisning och Emotionellt stöd. Ett bra bemötande är viktigt för att barnen skall känna tillit till sjukvården. Det är viktigt att göra barnen delaktiga. Barnen är experter på upplevelsen av sin egen sjukdom. Barnen behöver få emotionellt stöd för att kunna hantera sin vardag. Stödet kan komma från sjuksköterskorna eller Internetsidor. För att barnen skall kunna hantera sin sjukdom och sin situation krävs undervisning och information. Information kan ges i form av broschyrer och böcker samt från sjuksköterskorna och Internet. Önskvärt hade varit om grundutbildningen för sjuksköterskor innefattade omvårdnad för barn. De kunskaper grundutbildade sjuksköterskor har med sig efter examen kan tas tillvara genom att de kan uppmärksamma symtomen som ett barn med JIA har, och utefter det forma omvårdnadsåtgärder. Forskning på JIA är begränsad ur ett omvårdnadsperspektiv, och kunskapsluckorna behöver uppmärksammas. / Every year about 200 children are diagnosed with juvenile idiopathic arthritis (JIA) in Sweden. It is not only in specialized care nurses meet children who suffer from JIA, but also in universal health care. The aim of the study was to express the nursing care for children with juvenile idiopathic arthritis. This study is a literature study. The result highlights what is important in the nursing care of nursing children with JIA. This is presented in three themes: Attitudes, Information and teaching and Emotional support. A good attitude towards the children is very important so they feel a trust to the health care. It is important to make the children involved. Children are experts on the experience of their own illness. The children need emotional support to handle their everyday life. The support can come from the nurse or from Internet pages. If children shall be able to manage their condition and their situation, it requires education and information. The information can be provided from brochures, books, the nurse or the Internet. It would be desirable if nursing school would include nursing children. The knowledge a regular nurse has after the graduation can be taken advantage because they can pay attention to the symptoms a child with JIA has and shape nursing interventions. The research within JIA is limited from a nursing perspective, and knowledge gaps need attention.

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Thesis (Ph.D. in Epidemiology) -- University of Colorado at Denver and Health Sciences Center, 2005. / Typescript. Includes bibliographical references (leaves 114-126).