Introduction: Conversation treatment for individuals with aphasia (IwAs) aims to enhance language and communication skills within naturalistic settings. Group dynamics, including psychosocial support (PSS) and vicarious learning (VL), are important components of this treatment. However, the lack of established aphasia-friendly methods for quantifying group dynamics impedes understanding of its contribution to treatment efficacy. This study addresses three key research goals: (1) Can group dynamics be reliably quantified? (2) Do measures of group dynamics vary with group size or time? (3) Are group dynamics linked to changes in self-reported psychosocial health measures? Methods: IwAs were assigned to participate in either a large group or dyadic condition as part of a larger study. Participants completed multiple standardized assessments before and after receiving conversation treatment for one hour twice a week for ten weeks. A coding system was developed to track PSS and VL during sessions. Video recordings of sessions at the start (Session 2) and end (Session 19) of the treatment period were analyzed for five large groups and six dyads, with seven additional dyads coded for Session 19 after reliability was confirmed. Intrarater and interrater reliability were assessed by recoding 21% of the videos randomly. Results: To address the first research goal, group dynamics were defined and then a code was created to represent occurrences of PSS and VL. After establishing a reliable coding system, instances of PSS and VL were compared across size conditions to address the second research goal. The results suggested that PSS differed between conditions later in treatment, but VL did not. For research goal three, the data suggest that large groups experience larger gains in quality of life measures, possibly due to increased exposure to PSS. Conclusion: Findings indicate that group dynamics can be reliably tracked and used for quantitative analysis. PSS was more common in groups than dyads later in the 10 week treatment period, but VL did not vary across conditions or at the start or end of treatment. Further, there is some evidence that PSS in larger groups contributes to improvements in quality of life measures. / Communication Sciences

In recent years, there has been an ever increasing emphasis placed on the collection and use of patient reported outcome measures (PROM) in mental health services. This emphasis stems from a culture of evidence based practice, wherein PROM are shown to improve therapeutic outcomes at the clinical level, as well as provide information for the appropriate development of services and commissioning at a national level. This study uses an online survey to explore the use of PROM by mental health staff (n=112) in various Child and Adolescent Mental Health Services across England. Attitudes toward routine outcome monitoring practices and perceived competency around PROM use were also measured. Results found that although significant numbers of staff were using PROM, the amount of data being collected falls short of policy targets. Staff’s attitudes towards the practice are shown to be ambivalent, whereas overall perceived levels of competency were reasonably good. The relationships between attitudes, competence and PROM usage are discussed and a prediction model for PROM usage is developed in light of existing psychological theory. Results showed that training played an important role in the uptake of PROM and implications for the dissemination of training programs are emphasised.

Bakgrund: Integrated Palliative care Outcome Scale (IPOS) syftar till att ge en multidimensionell bild av patienters situation. IPOS används som ett sätt att bedöma patienters upplevelse av sina symtom, sin funktionsförmåga och sitt välbefinnande i relation till svår sjukdom. Få studier har dock utgått från patienternas perspektiv för att undersöka upplevelser av att använda IPOS. Syfte: Att undersöka patienters erfarenheter av att använda Integrated Palliative care Outcome Scale under pågående specialiserad palliativ hemsjukvård. Metod: Studien är genomförd med en kvalitativ ansats och en tolkande beskrivande design. Rekrytering till studien gjordes från tre specialiserade palliativa hemsjukvårdsenheter. Intervjuer genomfördes med 10 patienter, sju män och tre kvinnor med medelåldern 72 år. En majoritet var diagnostiserade med obotlig cancer. Data analyserades genom tolkande beskrivning så som den beskrivs av Sally Thorne. Resultat: Patienterna upplevde att använda IPOS medförde säker vård eftersom att det underlättade för sjuksköterskorna att göra korrekta bedömningar av patienternas behov. Således var IPOS en hjälp att planera vården utifrån patienternas specifika behov. Detta gav patienterna en känsla av att vården de fick var anpassad för dem, vilket gav en känsla av trygghet. De upplevde även att använda IPOS försäkrade att information fördes vidare på ett korrekt sätt från patienterna till vårdpersonalen genom att det minskade risken för missförstånd. De uppgav att IPOS underlättade diskussioner mellan dem och sjuksköterskorna om sådant de upplevde som viktigt. Patienterna upplevde även att använda IPOS möjliggjorde för dem att reflektera över sitt välbefinnande och sin livssituation. Att göra detta tillsammans med en sjuksköterska var berikande eftersom att det kunde ge nya perspektiv. Slutsats: Resultatet indikerar att patienterna i denna studie upplever att använda IPOS var givande för dem. Det kan konstateras att IPOS med fördel kan användas i specialiserad palliativ hemsjukvård. / Background: The Integrated Palliative care Outcome Scale (IPOS) is intended to provide a multidimensional view of patients’ concerns. IPOS can be used with the purpose of assessing patients’ perceptions of their functional status and wellbeing. Few studies have undertaken the patients’ perspective when exploring experiences of using IPOS. Aim: To explore patients’ experiences of using the Integrated Palliative care Outcome Scale during specialized palliative home care. Method: The study adopted a qualitative approach with an interpretive descriptive design. The patients were recruited from three different specialized palliative home care settings. Interviews were performed with 10 patients, seven men and three women, with a mean age of 72 years. A majority of the patients were diagnosed with incurable cancer. Data were analysed using interpretive description, as described by Sally Thorne. Results: Patients experienced that the use of IPOS entailed secure care as it facilitated nurses in making accurate assessments of patient care needs. IPOS helped to plan the care according to patients’ specific needs, making them feel confident that the care provided was tailored to them, giving a sense of security. Patients expressed that IPOS facilitated discussions between them and the nurse about care needs. They believed that using IPOS enabled opportunities for reflection on their wellbeing and life situation. Doing so with a nurse present was enriching, providing new perspectives. Conclusions: Patients experienced that using IPOS was beneficial. It can be concluded that IPOS provide an effective way to enable person-centred care and with advantage could be used in specialized palliative home care.

Cognitive difficulties can persist for months and years after stroke and adversely impact confidence, mood and functional recovery. Stroke survivors, carers and healthcare professionals collectively agree that improving cognition is the number one research priority for life after stroke. Future research should include measurements of outcome that service users deem important. Patient reported outcome measures (PROMs) are a means of gaining patient perspectives that can be standardised for use in a trial. PROMs should be developed with service users to incorporate their priorities but people with cognitive difficulties are often systematically excluded from the development and use of PROMs. Study 1 used qualitative interviews (N=16) to explore stroke survivor perspectives on the important and measureable impacts of persisting cognitive problems. The results of this study generated requirements for a PROM that related to conceptual underpinning and face validity of a measurement tool. Study 2 was a systematic review of existing PROMs related to cognition. 20 Identified PROMs were critically appraised against the requirements generated in the qualitative study. No existing PROMs were identified that met all of the qualitative study review criteria. The next stage described in chapter 3, was to develop a new PROM that: utilised the strengths of existing tools; met qualitative study requirements; and was refined through consultation with different stakeholders, prioritising feedback of stroke survivors with cognitive difficulties. The result of this work was the Patient Reported Evaluation of Cognitive State (PRECiS) scale. Study 3 was a psychometric study with stroke survivors (N=164) to test PRECiS in a large sample. Quantitative and qualitative data were collected on acceptability, feasibility and other psychometric properties of validity and reliability. PRECiS demonstrated good acceptability to stroke survivors and performed well psychometrically. Future validation work required for PRECiS is described in discussion chapter 4. Subject to further validation work, PRECiS may be particularly useful for pragmatic trials of cognitive rehabilitation after stroke.

While the importance of assessing the occupational consequences of insomnia and other sleep disorders is emphasised in clinical nosologies and research guidelines, there is little consensus on which aspects of occupational performance should be assessed, how such impairment should be measured, and how outcomes should be reported. The research programme described in this thesis aimed to address this issue. Chapter 1 presents a systematic review and methodical critique of studies reporting those aspects of occupational performance most impacted by (or most frequently associated with) insomnia symptoms and degraded sleep quality. Equivocal results, wide variations in reporting conventions, and the overall lack of comparability among studies, strongly indicated the need to develop a standardised metric able to quantify sleep related occupational performance and serve as an assessment and outcome instrument suitable for use in research and clinical settings. Informed by the literature review, Chapters 2-4 describe the development and validation of the Loughborough Occupational Impact of Sleep Scale ( LOISS ), a unidimensional 19 item questionnaire that captures sleep-related occupational impairment across a number of workplace domains over a 4-week reference period. Chapters 5-7 describe LOISS outcomes from: i) surveys in a random population sample; ii) a representative sample of the UK workforce; and iii) a clinical sample of patients with obstructive sleep apnoea (before and after treatment with CPAP). Overall, the scale showed strong internal consistency (Cronbach s alpha range=0.84-0.94) and test-retest reliability (r=0.77, r2=0.59, p<0.001), high levels of criterion validity (significantly discriminating between good and poor sleepers), and proved an effective outcome measure in OSA. From the survey data reported in Chapters 2-7, LOISS score distributions showed no consistent gender difference but did show a significant ageing gradient, with sleep-related occupational impairment declining with increasing age. In conclusion, the work presented here supports the usability, validity and reliability of the LOISS as an assessment and outcome instrument, and also demonstrates the utility of this instrument in exploring the dynamics of sleep-related occupational performance

Background: Patient-reported outcomes (PRO) assess disease burden and indicate unmet needs. Home-based electronic PRO measures (ePROMs) can support tumor aftercare (TAC). Creating an ePROM is the next step after implementing the software “OncoFunction” to assess PROs during TAC of head- and neck-cancer patients (HNC). Therefore, internet use and perception on ePROMs of ENT and TAC patients were evaluated. Methods: From May–July 2020, ENT patients at a high- volume outpatient department aged >18 without need for emergency treatment were invited to complete a questionnaire concerning internet use and access, hardware, and opinion on the chances, requirements, and designs of ePROMs. Results: 415 questionnaires were evaluated; 46.3% of the respondents visited the common consultation hour (CCH) and 44.3% TAC; 71.9% were internet users, being younger than non-internet users; and 36.4% of TAC patients were non-internet users and 16.3% of them were without a web-enabled device. Significant differences existed in age and assessment of future perspectives between internet-/non-internet users and TAC/CCH patients, respectively. Regarding the design of ePROMs, patients preferred quarterly and short surveys. Data safety and feedback were important. Conclusions: ePROMs are not suitable for everyone because of missing internet access and experience. A tailored approach to implement ePROMs in TAC is needed

No / Patient-reported outcome measurement has become accepted as an important component of comprehensive outcomes research. Researchers wishing to use a patient-reported measure must either develop their own questionnaire (called an instrument in the research literature) or choose from the myriad of instruments previously reported. This article summarizes how previously developed instruments are best assessed using a systematic process and we propose a system of quality assessment so that clinicians and researchers can determine whether there exists an appropriately developed and validated instrument that matches their particular needs. These quality assessment criteria may also be useful to guide new instrument development and refinement. We welcome debate over the appropriateness of these criteria as this will lead to the evolution of better quality assessment criteria and in turn better assessment of patient-reported outcomes.

The World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0) is a leading patient-reported outcome measure of disability. However, patients' perspective of the WHODAS 2.0 self-administered Swedish version have not been sufficiently described. Similarly, knowledge of its construct validity in the general population is missing. This creates a gap because updated norm data to use as reference is also missing. The overall aim of this study was to establish evidence of the measurement properties of the self-administered Swedish version of the WHODAS 2.0. Both qualitative and quantitative methods were adopted. In Study I, interviews with patients (n = 12) with orthopaedic or psychiatric conditions were performed and data were analysed by deductive content analysis. In Study II, a cross-sectional general population survey (n = 3 482) was conducted, and statistical methods based on classical test theory were used in the data analysis. The results show that the items were well understood, acceptable and easy to answer by outpatients, with the exception of six items (Study I).The internal consistency reliability was good or excellent and the construct validity was overall acceptable, with partial support for the factor structure in the general populations (Study II). The self-administered Swedish 36-item version of the WHODAS 2.0 is comparable to other language versions of the instrument. Some of the previous known weaknesses of its construct validity in relation to the item content and insufficient instructions were confirmed. The evidence of overall good content and construct validity together with available norm data supports its use in clinical settings and research.

<p><strong>Objectives: </strong>To assess the reliability and validity of the Patient Specific Functional Scale when administered to people living with Parkinson’s Disease.<strong></strong></p> <p><strong>Methods and Materials: </strong>Twenty six people living with Parkinson’s Disease from Hamilton and Burlington were interviewed four times within a four month period. The participants answered the Movement Disorders Sponsored Unified Disease Rating Scale part II, the Parkinson’s Disease Questionnaire 39, and the Patient Specific Functional Scale. Reliability assessment addressed test-retest reliability and reliability of the change scores using Intraclass Correlation Coefficients. Validity assessment focused on convergent construct validity and longitudinal validity by correlating the Patient Specific Functional Scale with the other measures administered.</p> <p><strong>Results: </strong>The<strong> </strong>test retest reliability of the scores yielded by the PSFS was ICCpre= 0.72 (95%CI=0.47-0.86); ICCpost=0.83 (95%CI=0.66-0.92). The reliability of change scores was 0.50. In relation to the validity, no significant correlations were found between the Patient Specific Functional Scale and the other measures. <strong></strong></p> <p><strong>Conclusions: </strong>The PSFS yields reliable scores when it is administered to people living with PD. The Patient Specific Functional Scale does not target the same outcomes as the MDS-UPDRS part II and the PDQ-39. The PSFS does not detect change in functioning in people living with PD within a four month period.</p> / Master of Science (MSc)

The rapid growth in opioid therapy for non-cancer pain has occurred without an adequate appreciation of the consequences of this growth. Few studies provide patient-centered evidence that can be used to inform the current proposed standards for efficacious (safe and effective) opioid prescribing in non-cancer pain. Furthermore, different terms may be used interchangeably in the literature to refer to opioid-taking behaviors, resulting in imprecise or vague interpretation of existing evidence. We therefore sought to explore patterns of opioid-taking behavior and their biopsychosocial-spiritual determinants in African-American adults with sickle cell disease (SCD). Many questions surround opioid use for non-cancer pain, but little has been published about behavioral patterns of taking opioids in these conditions. The main objective of this study was to develop a disease-specific scale for describing prescribed opioid taking in patients with sickle cell disease (SCD). As part of a multiphase, mixed-methods study, we used an adaptation of several published methods to construct 9 sequential, chronological steps for developing a new scale. We report here wide-ranging quantitative and semi-structured, qualitative interviews of 13 male and 11 female African-American adults with SCD, average age 36 years, from various socioeconomic and educational levels. We used grounded theory, priori and posteriori procedures to analyze the qualitative data, and to conduct an appraisal of translational validity. Scale development results have led to inclusion in the draft scale of new concepts namely momentary medication-taking behavior. The scale also captures concrete patterns of adherence for as-needed and scheduled medication and allows for several discovered conceptual domains that explain observed opioid-taking behaviors. These concepts challenge the current theories and models of medication-taking behavior and adherence. In summary, we found that contextual factors may drastically affect opioid-taking behaviors. Together, These uncovered phenomena raise new hypotheses that may challenge current theories and models of medication-taking behaviors and methods of assessing adherence. These hypotheses call for a new round of research on opioid-taking behavior, and need to be rigorously tested in future research