The Oxford Knee Score (OKS) is a popular single summary questionnaire developed to measure the effect of knee replacement surgery from the patients' perspective. There has been a recent interest in the use of the OKS in populations of patients and in roles it has not been originally developed for. To date, no evidence has been provided about the measurement properties of the OKS when it is used outside the context or purpose for which it was originally designed. The general aim of this thesis is to investigate the measurement properties of the OKS when used in extended roles: a) within the population for which the OKS was originally intended and developed for (knee replacement) and, b) when applied on a different population, viz. patients undergoing non-operative treatment for knee osteoarthritis (OA). Four existing large-scale databases of patients undergoing knee replacement surgery and a database obtained from a prospective study on patients undergoing non-surgical management for knee OA were analyzed. The results demonstrate that: 1) it is possible to extract separate information on pain and functional disability from the OKS in a meaningful way (in the form of subscales). 2) For the first time, anchor-based Minimal Important Change (MIC) of 9 points and Minimal Important Difference (MID) of 5 points were established for joint replacement surgery. 3) The OKS demonstrated satisfactory evidence reliability, validity, responsiveness, and interpretability, when used in patients who are undergoing non-operative management for their knee OA. 4) Further evidence of validity was demonstrated by fitting the OKS to the Rasch model. 5) Lastly, it was demonstrated that thresholds can be applied on the OKS to distinguish between patients who consider their knee problem to be severe enough to warrant joint replacement surgery versus patients who do not. This supports the potential use of the OKS in decision making aids for secondary care referral. Overall the thesis provides critical evidence, not previously existing, to support the continued use, and extended use, of the OKS in orthopaedic medicine.

Severe perineal trauma with injury to the anal sphincter at childbirth can have a profound effect on the physical and psychological wellbeing of women. This thesis describes literature examining resulting outcomes including effects on body image. It describes patient-based outcome measures used to capture this information, and evaluation of their psychometric properties. Body Image can be defined as an individual's perceptions and feelings about their own body. There is a growing interest in how this concept can influence quality of life and psychosocial dysfunction in medical disorders. This thesis aimed to examine relationships between severity of perineal trauma, general and genital specific body image and potentially influences such as symptoms of pelvic floor dysfunction. No patient-reported outcome measure validated for use in women after anal sphincter injury exists and this thesis also aimed to psychometrically evaluate an existing electronic questionnaire, ePAQ (electronic personal assessment questionnaire), for this application. In the thesis, a retrospective review of body image and physical outcomes attending a perineal clinic shows over half of women report perceived changes in body image after anal sphincter injury, with negative effects on self-esteem. A prospective observational cohort study explored genital and general body image in primiparous women grouped according to degree of perineal trauma or caesarean delivery. Women completed the Female Genital Self Image Score, the modified Body Image Score, ePAQ and the Edinburgh Postnatal Depression Scale a mean of 15.5 weeks (standard deviation 1.6) after delivery. There were significant differences in genital body image scores between the groups, but not in general body image, with regression analysis showing the greatest influence on genital body image to be the anatomical extent of the trauma. Embedded into this study was the evaluation of reliability (internal consistency and test-retest) and validity (face, content and construct) of ePAQ in the group of women with anal sphincter tears. This thesis presents the first research to quantify issues surrounding severe perineal trauma and body image and demonstrates that more severe trauma leads to a poorer genital body image. It also reports psychometric evaluation of ePAQ in women after anal sphincter injury providing the first single instrument with validity and reliability for use in this context.

Introduction The use of Patient Reported Outcome Measures (PROMs) to measure the effects of care is being advocated increasingly in clinical settings. Current patient data capture involves completion of paper questionnaires which is costly and environmentally perplexing. New innovations are required to balance the challenges of introducing data capture directly from patients while considering budgets, access to Information Technology, and the capability to use technological devices. Methods Two qualitative studies were undertaken to identify the views of patients and clinicians concerning electronic PROM data capture in osteopathic practice. One qualitative study involved patient interviews to identify their views on a selection of specific PROMs. Clinician focus groups and interviews (osteopaths, chiropractors, and physiotherapists) were undertaken concerning their views and experiences of using PROMs. Scoping of PROMs in musculoskeletal practice was undertaken followed by a systematic review of one identified PROM. The review and qualitative work informed the development of content for a mobile and web app for capturing PROM data. The app was piloted to evaluate feasibility, and the clinimetric performance of the included PROMs. Feedback from the pilot informed revisions to the app prior to implementation into osteopathic practice. Results Clinicians (n=46) identified a range of barriers and facilitators to PROM use. Patients (n=22) while generally more enthusiastic than clinicians welcomed the opportunity to provide feedback and although undaunted by the use of technology highlighted the need for assurances concerning confidentiality of data, and limits on data sharing. The systematic review identified good measurement properties for the Bournemouth (BQ). Piloting of the app involved 257 participants contributing 404 data returns: it performed well requiring minimal revision prior to implementation. Conclusions The app performed well demonstrating great potential for further development to collect outcome data in a musculoskeletal clinical setting.

Efficient allocation of public resources requires identification, measurement and quantification of costs and benefits of alternative programs. Patient reported outcomes (PROs) are routinely incorporated into economic evaluations of health technologies, but patient experience is often overlooked. This thesis aims to develop a descriptive system for patient experience that can be valued and used to inform economic evaluation. The generation and selection of items is key in the development of any PRO measure. The thesis provides a contemporary overview of recommended methods and those actually used by instrument developers. Frequently a staged approach is used to establish dimensions first, using exploratory factor analysis, followed by item selection using item response theory (IRT), Rasch or structural equation modelling (SEM). I demonstrate the use of different methods for item selection and its underlying mechanics, followed by comparison of the methods. An existing patient dataset, the Inpatient survey (2014) that collected information on nearly 70 aspects of healthcare delivery from NHS users was used. Logistic regression analyses were applied with respondents' rating of overall patient experience specified as dependent variable. Advanced statistical analyses focussed mostly on patients who had an operation or procedure. Latent construct or dimensions were derived and measurement model was confirmed using confirmatory factor analysis. IRT and factor analysis were employed in each one-factor model for item selection. Regression analyses identified many significant variables but most overlapped conceptually. An 11 and 8 factor model for patients with A&E and planned admissions respectively was determined. A generalised partial credit model and a factor analysis model identified different items to include in each dimension. Broadly the items identified by different methods related to respect, comfort and clear communication to patients. This thesis presents descriptive systems for patient experience that is amenable to valuation. It also demonstrates that different patient experience instruments are generated based on patient population used and item selection technique adopted.

Thesis Title: Enhancing rehabilitation following anterior cruciate ligament reconstruction. Context: Physical training with a neuromuscular focus has been shown to reduce anterior cruciate ligament (ACL) injury. However, ACL injury remains prevalent and often leads to joint instability, which requires surgical reconstruction. Following reconstructive surgery, a minimum of 6 months supervised rehabilitation is recommended with associated with financial cost implications to the National Health Service (NHS), the patient and society. Traditionally rehabilitation is offered in a concurrent format, whereby strength and cardio-vascular endurance exercises are performed in the same session. However, accumulating evidence from healthy populations, suggests that the development of strength might be attenuated by cardio-vascular endurance conditioning performed in close temporal proximity. This thesis comprises an entirely novel investigation of potential attenuation of strength gains in rehabilitating clinical populations that is associated with temporal incompatibility of physiological conditioning stimuli. No study has previously investigated this phenomenon, whether it might compromise the efficacy of treatment or recovery, or its potential influence on objectively-measured and patients’ perception of functional, musculoskeletal and neuromuscular performance capabilities. Objectives: The purpose of this thesis was to assess the effects of reconstruction surgery and 24 weeks of non-concurrent strength and endurance rehabilitation (with 48 week post-operative follow-up) on (a) subjective (IKDC; KOOS; PP [Chapter 4]) and objective measures of function (HOP [Chapter 5]) (primary outcome measures for this thesis), and (b) objective measures of musculoskeletal (ATFD) and neuromuscular performance (PF, EMD, RFD, SMP [Chapter 5]) (secondary outcome measures), in patients with anterior cruciate ligament deficiency. The secondary aim was to evaluate the relationships amongst a subjective outcome of function (IKDC), an objective outcome of function (HOP), and the secondary objective outcomes of musculoskeletal (ATFD) and neuromuscular (PF, RFD, EMD, SMP) performance at pre-surgery and at 24 weeks post-surgery (Chapter 6). Setting: Orthopaedic Hospital NHS Foundation Trust. Design: Prospective random-allocation to group trial involving iso-volume rehabilitative intervention versus contemporary practice, using contralateral limb assessment and clinico-social approbation controls. The design compared the effects of experimental post-surgical rehabilitation comprising non-concurrent strength and endurance conditioning with two conditions of control reflecting contemporary clinical practice (matched versus minimal assessment interaction). Participants: Eighty two patients (69♂, 13♀, age: 35.4 ± 8.6 yr; time from injury to surgery 9.4 ± 6.9 months [mean ± SD]) electing to undergo unilateral ACL reconstructive surgery (semitendinosus and gracilis graft [n = 57]; central third, bone-patella tendon-bone graft [n = 25]); were allocated to groups (2:2:1 purposive sampling ratio, respectively). Nineteen patients were lost to follow-up. Intervention: A standardised traditional concurrent (CON) ACL rehabilitation programme acted as the control versus an experimental non-concurrent (NCON) ACL rehabilitation programme that involved separation of strength and cardio-vascular endurance conditioning. An additional control group (Limited testing CON) matched the CON group rehabilitation applied within contemporary clinical practice. Outcome Measures: Chapter 4: The self-perceived primary outcome measures of function IKDC, KOOS and PP were assessed on five separate occasions (pre-surgery, and at 6, 12, 24 and 48 weeks post-surgery). However, assessment occasions were purposefully reduced to pre-operative and 48 weeks post-operative for the Limited testing CON group. Chapter 5: The primary objective outcome of function was HOP; the secondary outcomes were ATFD, PF, RFD, EMD and SMP associated with the knee extensors and flexors of the injured and non-injured legs. These objective outcomes were assessed on five separate occasions (pre-surgery, and at 6, 12, 24 and 48 weeks post-surgery). However, assessment occasions were purposefully reduced to pre-operative and at 48 weeks post-operative only for the Limited testing CON group. Chapter 6 Self-perceived (IKDC) subjective knee evaluation and the objective outcome of function (HOP), and selected objective outcomes of musculoskeletal and neuromuscular performance including ATFD, PF, RFD, EMD and SMP of the knee extensors and flexors of the injured and non-injured legs where applicable; measured at pre-surgery and at 24 weeks post-surgery were analysed for association, using Pearson product-moment correlation coefficients. A priori alpha levels were set at p<0.05. Results: Chapter 4: Factorial analyses of variance (ANOVAs) with repeated-measures investigating the primary aim showed significant group (NCON; CON) by test occasion (pre-surgery, 6, 12. 24 and 48 weeks post-surgery) interactions for self-perceived outcomes of function IKDC, KOOS and PP confirmed increased clinical effectiveness of NCON conditioning (F(2.0, 82.9)GG = 4.0 p<0.05, F(2.2, 134.7)GG = 5.5 p<0.001, F(1.9, 121.4)GG = 14.6 p<0.001, respectively) and the group mean peak relative difference in improvement for NCON was ~5.9% - 12.7% superior to CON. The greatest interaction effect was found to occur between pre-surgery and the 12 weeks post-operative test occasion for IKDC and KOOS, and between pre-surgery and the 24 week test occasion for PP. Patterns of improvements in self-perceived fitness over time were represented by a relative effect size range of 0.71 to 1.92. Improvement patterns were not significantly different between control groups offering matched or minimised assessor-patient interaction (CON vs. Limited testing CON; pre-surgery vs. 48 weeks post-surgery) indicating that clinical approbation by patients had not contributed to the outcome. Chapter 5: Factorial analyses of variance (ANOVAs) with repeated-measures showed significant group (NCON; CON) by leg (injured/non-injured) by test occasion (pre-surgery, 6, 12, 24 and 48 weeks post-surgery) interactions of the objective measure of function (HOP) together with the secondary outcomes of ATFD, PF, RFD, EMD and SMP. Similar responses were noted for the knee extensors and flexors of the injured and non-injured legs (F(2.1, 248) GG = 4.5 to 6.6; p<0.01) and confirmed increased clinical effectiveness of NCON conditioning (range ~4.7% - 15.3% [10.8%]) better than CON between 12 and 48 weeks. Patterns of improvements in physical fitness capabilities over time were represented by a relative effect size range of 1.92 to 2.89. Improvement patterns were not significantly different between control groups offering matched or minimised assessor-patient interaction (CON vs. Limited testing CON; pre-surgery versus 48 weeks post-surgery) indicating that clinical approbation by patients had not contributed to the outcome. Chapter 6: Two-tailed probabilities were used due to the exploratory nature of this study. A limited number of weak to moderate statistically significant correlations were confirmed (ranging from r = 0.262 – 0.404; p<0.05; n=48 [amalgamated NCON and CON groups] ) between IKDC and most notably, the neuromuscular performance outcome of EMD. Conclusion: Overall, the patterning and extent of changes amongst self-perceived, functional, musculoskeletal and neuromuscular performance scores offer support for the efficacy of using non-concurrent strength and endurance conditioning to enhance post-surgery rehabilitation. The limited robustness of relationships amongst the validated and frequently-used self-perceived outcome of function [IKDC], and objectively-measured outcomes of function and musculoskeletal and neuromuscular performance suggested that each might properly reflect an important but separate aspect of clinical response and should be deployed to detect change.

Patient adherence to in-clinic rehabilitation is between 30-70% and even lower for home exercise programs (HEPs). Barriers to patient adherence have been identified and include but are not limited to anxiety, depression, lack of positive feedback, lack of social support, lack of time, low levels of physical activity at baseline, pain during exercise, and low self-efficacy. As clinicians prescribing rehabilitation may not be able to influence all of the identified barriers, they may positively influence others. Self-efficacy, or an individual’s belief in his/her ability to successfully complete a task, is a patient barrier that may be addressed by a clinician when aware of low self-efficacy and have tools to improve this barrier. Interventions to overcome this specific barrier have demonstrated an increase in not only self-efficacy but patient adherence as well. Although interventions have proven to be successful, patient adherence has yet to increase according to the literature. At this time, there is no evidence to suggest that clinicians are assessing an individual’s level of self-efficacy prior to prescribing HEPs. In addition, there is no known metric to measure self-efficacy for HEPs in patients rehabilitating musculoskeletal conditions. Assessment of patient barriers, specifically self-efficacy, needs to be a standard of care in order to increase adherence, in turn, improve patient outcomes and to reduce the cost to our healthcare system. The first purpose of this dissertation was to determine in patients with musculoskeletal conditions what scales have been developed and evaluated for assessing self-efficacy in conjunction with adherence. In addition, to determine if a tool exists specifically to assess self-efficacy for HEPs. Due to the task and situation-specific nature of self-efficacy, it is important that this construct is reflected in the assessments utilized by clinicians. The second purpose was to determine the importance and utilization of patients’ self-efficacy to physical therapists when addressing patient barriers. This included determining how physical therapists assess patient self-efficacy and barriers to assessment. The third purpose was to develop the Self-Efficacy for Home Exercise Programs Scale and determine the psychometric properties of the instrument. This also allowed for the examination of how self-efficacy relates to patient adherence in a musculoskeletal patient population. The results of the first study suggest that within the musculoskeletal literature, a number of scales are being used to assess patient self-efficacy. These scales are either task, situation, or condition specific. No scale was found to assess self-efficacy for HEPs. This finding indicates the need to develop a scale to assess self-efficacy for HEPs. In the second study, 71% (n = 329/464) of physical therapists, disclosed assessing self-efficacy prior to prescribing HEPs and rated self-efficacy as very to extremely important when it comes to their patients’ adherence. Verbal discussion is the most common method of self-efficacy assessment (50%), followed by observation of the patient (38%), then patient self-report questionnaires (10%). Commonly, physical therapists report using verbal discussion and observation in combination. Of the 29% of the physical therapists that do not assess self-efficacy, 40% report not knowing how to assess self-efficacy, 19% are not sure what to do with the information once self-efficacy is assessed, 16% claim there are other barriers to assessment, 15% claim that assessing self-efficacy will not change their practice, another 9% claim assessing self-efficacy takes too much time, and the last 1% do not know what self-efficacy is. These results further suggest the need for a scale to assess self-efficacy for HEPs. The purpose of the final study was to developed a Self-Efficacy for Home Exercise Programs Scale. The scale was found to have high internal consistency (α = 0.96), acceptable test-retest reliability (ICC = 0.8, SEM = 5, MDC = 7), and strong convergent validity with the Self-Efficacy for Exercise scale (rho(ρ) = 0.83, p < 0.01). Unique to this scale, a cutoff score was determined to be 59 points with a positive likelihood ratio of 2.0 (95% CI 1.1 – 2.5) indicating those who score below 59 points on the SEHEPS would be 2 times more likely to be non-adherent than adherent to their HEP. A weak to moderate, positive relationship was detected between the patients’ initial level of self-efficacy for their HEP and adherence (rho(ρ) = 0.38, p = 0.03). These results suggest that the Self-Efficacy for Home Exercise Programs Scale may be utilized by rehabilitation clinicians to assess self-efficacy for HEPs. Clinically, this scale may provide clinicians the ability to decipher patients who are not likely to adhere to their prescribed HEP, allowing clinicians to intervene immediately. Early intervention to improve self-efficacy may increase adherence to HEPs and eventually patient outcomes.

Femoral acetabular impingement (FAI) is a bony hip condition that often results in tears to the acetabular labrum. Patients with FAI experience pain, decreased function, and quality of life. FAI and its’ sequela are treated definitively with hip arthroscopy. Hip arthroscopy is being performed with increasing frequency, and while most patients respond favorably, a subset of 10-20% of patients have suboptimal outcomes. Previous research suggests that mental status may be a primary driver in the way patients with FAI respond to and feel pain. Measures of mental status include the presence of mood disorders and psychosocial patient reported outcomes (PROs). Psychosocial constructs that have yet to be examined in patients with FAI include self-efficacy, kinesophobia, and pain catastrophizing. The Pain Self-Efficacy Questionnaire (PSEQ) gauges an individual’s confidence, or self-efficacy, in their ability to complete tasks despite their current pain. Previous research has established that a patient’s self-efficacy is an important determinant of long-term success following orthopedic surgery. Kinesophobia, measured via the Tampa Scale for Kinesiophobia (TSK), is a measure of movement-related fear. In contrast to self-efficacy, fear of movement has been identified as a predictor of early success following orthopedic surgery. Lastly, pain catastrophizing is a set of maladaptive behaviors including ruminating on pain, feeling helpless to overcome painful situations, and magnifying the circumstances surrounding the painful experience. Catastrophizing behaviors, measured via the Pain Catastrophizing Scale (PCS), have been repeatedly linked to increased pain and decreased functionality in a variety of orthopedic populations. To date, the relationship between these psychosocial variables and pain has not been examined in patients with FAI. The primary aim of this dissertation was to evaluate the role of psychosocial factors on pre and postoperative pain in patients with FAI undergoing hip arthroscopy. To accomplish this aim we performed a series of three studies. The first study was a retrospective chart review to determine the prevalence of mental health disorders and compare preoperative clinical presentation between patients with and without mental health disorders. The second was a cross-sectional study designed to determine if any psychosocial variables could predict preoperative hip pain. The final study utilized a longitudinal, cohort design. Patients were tested preoperatively and at 12-weeks postoperative. The primary outcomes measured were self-efficacy, kinesiophobia, pain catastrophizing, and hip pain at rest and during activity measured via a visual analog scale (VAS). The purpose of this study was to determine the effect of preoperative psychosocial variables on postoperative pain, and to determine if these variables were predictive of persistent postoperative pain three months following hip arthroscopy. Based on the results from these studies we can conclude the following: 1) Mental health disorders are more common in patients with FAI than other orthopedic populations, and self-reported pain and function are worse in this subset of patients, but neither symptom chronicity nor the severity of joint deformity differs; 2) Low self-efficacy is predictive of worse preoperative pain in patients with FAI; and 3) Patients with high preoperative pain catastrophizing or low self-efficacy are more likely to have increased postoperative pain. Low preoperative self-efficacy is predictive of persistent hip pain during activity three months following hip arthroscopy, while low self-efficacy and mental health disorders are predictive of persistent hip pain at rest. Future studies are necessary to develop and implement interventions targeting low self-efficacy and elevated catastrophizing in patients undergoing hip arthroscopy to improve patient outcomes for this high-risk group.

Hundreds of state regulations were passed during the “managed care backlash” of the late 1990s and early 2000s. Many of these anti-managed care regulations eased or eliminated constraints on patient utilization of health care services imposed by managed care organizations. Other regulations gave managed care providers more flexibility in the way they practiced care or helped patients appeal denials of claims. Despite the effort undertaken to pass these regulations, limited research exists on whether the regulations achieved their goal. To fill this gap, this study takes advantage of the variety of regulations enacted during the managed care backlash of the late 1990s and early 2000s to investigate their impact on patient-reported quality of care and mortality for managed care enrollees. The results indicate the regulations did improve patient-reported outcomes, but to varying degrees and only in the latter period of the backlash. Specifically, managed care enrollees who lived in states that adopted moderate-intensity regulations between 2000 and 2004 reported relatively better improvements in access to care and confidence in their provider than did managed care enrollees in states with low-intensity backlash regulations. The positive effect on access to care was similar in states that adopted high-intensity regulations. However, no positive effect was found for any outcome in the first period (1996-2000). These results show that states with the most intense regulatory backlash did not realize better patient-reported outcomes. Instead, states that pursued moderate-intensity backlash regulations experienced relatively better outcomes for their managed care enrollees.

Background: Health-Related Quality of Life (HRQOL) can be negatively affected in patients living with arrhythmias and many patients experience a pronounced symptom burden. The arrhythmia can cause both uncertainty and limitations, including interference with work, reluctance to perform and plan for leisure activities and leading to self-imposed restrictions in daily life situations. There are patients striving to find strategies to manage the arrhythmia and for some this can become the focus in their lives. Treatment options are often a choice between pharmaceuticals and radiofrequency ablation (RFA) where RFA is an option for many arrhythmia-patients to be cured. In the care of arrhythmia-patients it is of great importance to combine objective examinations with patient-reported outcomes (PROs) to achieve patient’s own experiences of treatment efficacy and arrhythmias interference in daily life situations. Aims: The overall aims of this thesis were to assess symptom burden and HRQOL in patients with arrhythmias and to develop and validate an arrhythmia-specific questionnaire, suitable for most arrhythmia-patients. Design and Methods: Studies I and II were single-centre studies including patients referred for RFA, with two different arrhythmia diagnoses. Assessments of patient-reported outcomes (PROs) concerning HRQOL were performed using two questionnaires, SF-36 and EQ-5D (I-II). Further, patients were asked some disease-specific questions (I). Study I describes assessments before the RFA treatment and Study II the follow-up assessments at three and twelve months after RFA. Patients’ scoring of HRQOL was compared to age and gender matched reference groups before and after RFA (I-II). Studies III and IV describe the development and validation of a disease-specific questionnaire ASTA (Arrhythmia-Specific questionnaire in Tachycardia and Arrhythmia) assessing symptom burden and HRQOL. Studies III and IV were multicentre studies. Patients planned for DC-conversion, AF patients seeking emergency care and those with different forms of arrhythmias referred for RFA were included. Results: Patients scored significantly lower HRQOL in seven of SF-36’s eight scales compared to the age and gender matched reference groups before RFA treatment. Frequent arrhythmia attacks had a great negative impact on HRQOL, and female gender and older age were factors contributing to worse HRQOL (I). Treatment with RFA restored the patients’ HRQOL. Most positive effects were seen at three months follow-up. One year after treatment patients and the matched reference group scored their HRQOL to a similar level, assessed with SF-36 and EQ-5D index (II). The validated ASTA questionnaire was found to have good psychometric properties. Construct validity was confirmed with sufficient levels of item-total correlations in the ASTA symptom burden scale and HRQOL scales. The dimensionality of the ASTA HRQOL scale was established with confirmatory factor analysis, supporting a physical and a mental subscale. The internal consistency, demonstrated with Cronbach’s alpha (α), was satisfactory for the ASTA symptom burden scale and the ASTA HRQOL scales, varying from α 0.79 to α 0.91 (III-IV). Conclusions and clinical implications: The studies in this thesis confirmed how negatively affected the arrhythmia-patients can be with a pronounced symptom burden and impaired HRQOL. Treatment with RFA was demonstrated to restore the patients HRQOL to an equal level of that of the matched reference group. PROs are important to take into consideration in the care of arrhythmia-patients, to achieve the patients’ subjective experiences of their daily life situation. To the best of our knowledge ASTA is the first arrhythmia-specific questionnaire assessing symptom burden and HRQOL, suitable for most arrhythmia forms. The newly validated ASTA questionnaire can be an important contribution to assessment of PROs in arrhythmia-patients.

Velofarynxinsufficiens (VPI) innebär en otillräcklig förmåga att stänga passagen mellan mun- och näshåla. En ofullständig slutning får konsekvenser framför allt för talet, då luft passerar genom näsan även vid orala språkljud och leder till en avvikande talklang och artikulation. Dessa avvikelser kan vara mer eller mindre framträdande i talet och innebära allt ifrån en lätt förvrängning av talklangen till att talet blir oförståeligt för omgivningen, vilket får allvarliga konsekvenser för möjligheten att kommunicera verbalt.   VPI kan behandlas på flera sätt, dels protetiskt, dels med kirurgi. Deltagarna i denna studie har alla genomgått operation med uppåtbaserad farynxlambå, som är en väldokumenterad och effektiv metod för att behandla VPI. En vanligt förekommande biverkning till operationen är luftvägshinder, exempelvis nästäppa, snarkning och sömnapné.    Syftet med studien var att undersöka deltagarnas egen uppfattning om operationsresultatet gällande tal och biverkningar, med hjälp av en enkät för självskattning. 61 patienter opererade med uppåtbaserad svalglambå under perioden 2000-2011 vid Akademiska Sjukhuset i Uppsala deltog i studien. Deltagarna delades in i tre undergrupper utifrån etiologi: deltagare med spalt (n  =  35), deltagare med spalt och syndrom (n  =  13), samt deltagare utan spalt (n  =  13).   Resultat: 55 av 61 deltagare (90  %) ansåg att operationen förbättrade deras tal. 49 av 61 deltagare (80  %) skulle dessutom rekommendera operationen till någon annan med samma besvär. 42 av 61 deltagare (68,8  %) uppgav att de är nöjda med sitt tal. Kvarstående biverkningar som rapporterades var nästäppa, snarkning, dagtrötthet och muntorrhet. Deltagarna upplevde dock dessa biverkningar i liten grad. Ingen tydlig skillnad sågs mellan de olika patientgrupperna. / Velopharyngeal insufficiency (VPI) is the inability to completely close the velopharyngeal port. Velopharyngeal closure is an important part of speech. VPI leads to a leakage of air into the nasal cavity during speech, which can cause hypernasal resonance and misarticulations. The effect of VPI on speech differs depending on the nature of the insufficiency. It can affect speech intelligibility severely.   VPI can be treated prosthetically or surgically. The patients in this study have all undergone pharyngeal flap surgery; a well established surgical method with documented effect in correcting VPI and reducing hypernasality in speech. Pharyngeal flap surgery can have negative consequences, such as airway obstruction, sleep apnea and snoring.   The aim of this study was to investigate the patients experiences of speech, complications and side-effects after pharyngeal flap surgery, through self-reports. 61 patients who underwent superior pharyngeal flap surgery during the period 2000 to 2011 at Uppsala University Hospital participated in the study. They were divided into three sub-groups: patients with cleft (n  =  35), patients with cleft and syndrome (n  =  13), patients without cleft (n  =  13).   Result: 55 of 61 participants (90 %) were of the opinion that the pharyngeal flap surgery had improved their speech. 49 of 61 participants (80 %) said they would recommend someone else with the same problem to undergo the operation. 42 of 61 participants (68,8 %) were content with their speech. Reported residual side effects, though experienced in low degree, were nasal congestion, snoring, weariness during daytime and dry mouth. No evident difference was seen between the sub-groups.