| 1. |
- Alwin, Jenny, 1978-
(författare)
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Assessment of Support Interventions in Dementia : Methodological and Empirical Studies
- 2010
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Dementia means a continuous deterioration of abilities and has a large impact on the persons affected as well as on family members and others close to the persons with dementia. Interventions aimed at this population in order to support and alleviate the often straining situation may be of great importance. There is a need to increase the knowledge and understanding of the impact and consequences of these interventions, both at an individual level and at a societal level. The demand for information concerning, e.g., economic and medical impact of technologies and interventions within health care is increasing. Assessment of technologies and interventions in dementia is related to certain methodological issues. The overall aim of this thesis is to contribute to the development of methodological knowledge concerning assessment studies and understanding of support interventions in dementia.This thesis work includes four studies that examine methodological aspects of assessment of support interventions in dementia and also report empirical research on the perception of support interventions from the perspectives of family caregivers of persons with dementia. In study I, an assessment model for assistive technology (AT) interventions in dementia was developed. In study II, part of the assessment model is applied, and a process evaluation of the AT intervention is presented. Study III examines family caregivers’ perception of the importance of different types of support and services. In the final study, study IV, a well‐acknowledged methodological challenge within the field of assessment in dementia is addressed: measuring health‐related quality of life (HRQoL). The studies are based on different data materials.An assessment model of AT interventions was developed that includes health economic evaluation from a societal perspective as well as evaluation of the intervention process. The perspectives of both persons with dementia and their relatives were incorporated in the model. The process evaluation was applied in study II in order to study the relatives’ perception of an AT intervention process. Assistive technology interventions in dementia may be of great significance for the relatives. By performing the process evaluation, several important aspects that need to be acknowledged in AT intervention processes in dementia were identified.Family caregivers of persons with dementia perceived different types of support/services within the comprehensive areas of counselling, relief and information as very important. Knowledge of the caregivers’ preferences is significant so that more directed support interventions may be provided.One specific methodological issue was addressed in study IV. The results of study IV showed that there were large differences in the results of cost‐effectiveness analyses depending on whether patient self‐ratings or proxy ratings (ratings of persons close to the patient) of patient HRQoL were used for the same analysis. These differences in the results could ultimately have an important impact on decision making and resource allocation.Support interventions aimed at persons with dementia and their relatives may be of great value. Conducting assessment studies of technologies and interventions within health care is important in order to increase the knowledge concerning, e.g., economic and medical impact. Assessment studies of support interventions dementia entails methodological issues that need to be addressed. There is a need for increased knowledge within this field and suggestions on methodology are made.
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| 2. |
- Broqvist, Mari, 1958-
(författare)
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Asking the public : Citizens´ views on priority setting and resource allocation in democratically governed healthcare
- 2018
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Resource allocation in publicly funded healthcare systems is inevitably linked with priority setting between different patient groups and between different service areas, so-called meso level priorities. Behind every priority-setting decision (investments, reallocating or rationing), are values affecting both the content of the decisions and how the decisions are made. The importance for priority-setting to reflect social values, has been emphasised for the legitimacy of the healthcare systems and the decision makers. Also important, if supposed to provide enough guidance in practice, is that content values, expressed in ethical principles and criteria, are further operationalised. Few studies exist where Swedish citizens have been asked about priority setting and rationing at meso level, and findings from other countries cannot automatically be transferred to the Swedish context.The overall aim of this thesis is to extend and deepen the knowledge of the Swedish citizens´ views on acceptance of rationing in healthcare, on appropriate decision makers for rationing, and on the severity criterion for priority setting. Two qualitative and one mixmethod study were conducted, where citizens were interviewed. Citizens´ views on severity were also compared, both with a Severity Framework, derived from parliamentary-decided ethical principles and used for resource allocation, and with health professionals´ and politicians´ ranking of different aspects of severity in a quantitative, survey study.Study I shows that citizen participants perceived that acceptance of rationing at meso level is built on the awareness of priority-setting dilemmas between patient groups. No such spontaneous awareness was found. Depending on reactions of self-interest or solidarity, acceptance was also perceived to be built on acceptable principles for rationing and/or access to alternatives to public care. Study II shows that awareness of the meso level forms the basis for awareness of different risks of unfairness, linked with potential decision makers (even health professionals). Collaborative arrangements were promoted in order to control for such risks, especially the risk of self-interest. Politicians, in contrast to previous studies, were favoured as final decision makers for rationing healthcare. In study III, citizen participants identified the same severity aspects as health professionals and experts had done in the Severity Framework. They contributed with some possible refinements, but also promoted aspects not in line with established ethical criteria for priority setting in Sweden. Study IV shows that citizen respondents differ to a larger proportion compared to politicians´ ranking of severity aspects, than with that of health professionals´. The greatest number of significant differences was found between politicians and health professionals.This thesis has several implications. Politicians ought to strive for greater public awareness of the priority-setting dilemma at the meso level in healthcare, both according to the process and the content values behind the decisions. Social values not in accordance to the parliamentary decision indicate a need to facilitate an ongoing dialogue, reason-giving activities and promotion of content values of solidarity. To capture social values on priority setting and rationing, ambitious public deliberation is not the only way. Methodologically stringent research, with a variety of study designs, could contribute in many important ways.
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| 3. |
- Engstrand, Christina
(författare)
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Hand function in patients with Dupuytren’s disease : Assessment, results & patients’ perspectives
- 2016
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Dupuytren’s Disease (DD) is a soft tissue disorder that leads to finger joint contractures affecting hand function. DD can be treated with surgery or injection and hand therapy to improve finger joint extension and thereby improve hand function. However, this does not cure the disease and recurrence is common. Previous research on DD has shown improvement in finger joint extension and in self-reported disability of the upper extremity after surgery and hand therapy for DD. However, this provides only a limited perspective on hand function, and multiple dimensions of changes in hand function (i.e. physical, psychosocial aspects and including the patients’ views of results) have not been reported as a whole.Aim: The overall aim of the thesis was to explore hand function before and after surgery and hand therapy in patients with DD, including assessment, results and patients’ perspectives.Methods: The thesis comprises three studies: Study A was a methodological study of interrater reliability in goniometry of the finger joints. Study B was a prospective cohort study with a repeated measures design. Study C was a qualitative interview study, using the model of Patient Evaluation Process and content analysis.Results: Interrater reliability was high or very high for goniometer measurement of finger joint range of motion (ROM) in patients with DD when experienced raters follow our standardized guidelines developed for the study. Changes in hand function consisted of improvement of finger joint extension while active finger flexion was significantly impaired during the first year after surgery and hand therapy. No patient reached a normal ROM, but the majority reached a functional ROM. Sensibility remained unaffected. Patients with surgery on multiple fingers had worse scar pliability than patients with surgery on a single finger. Most patients had their expectations met and were pleased or delighted with their hand function at 12 months after surgery and hand therapy. Safety issues of hand function were of greater concern than social issues. Patients reported less disability and improved health-related quality of life after surgery and hand therapy. The three variables “need to take special precautions”, “avoid using the hand in social context”, and health-related quality of life had significant importance for patients’ rating of functional recovery. Together, these variables explained 62% of the variance in functional recovery. Patients’ perspectives of undergoing a surgical intervention process were described through five categories. Previous experiences of care influenced participants’ expectations of results and the care they were about to receive. Previous experiences and expectations were used as references for appraisal of results, which concerned perceived changes in hand function, the care process, competency, and organization. Appraisal of results could also vary in relation to patient character. Appraisal of results of the intervention process influenced participants’ expectations of future hand function, health and care.Conclusions: Surgery and hand therapy for DD improve hand function and patients regain a functional ROM needed for performance of common daily activities. Despite the negative effect on finger flexion present during the first year after surgery, patients’ regards their hand function as recovered six to eight months after surgery and hand therapy. Measuring digital ROM in the finger joints with a goniometer is a reliable assessment method. However, from the patient’s perspective, it is not enough to evaluate results only in terms of digital extension or ROM. From their view, results of treatment concern consequences on daily use of the hand, what happens during the care process in terms of interaction between patient and health care provider, as well as their view of the competence and logistics of the organization providing the care.
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| 4. |
- Davidson, Thomas, 1977-
(författare)
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How to include relatives and productivity loss in a cost‐effectiveness analysis
- 2009
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Health economic evaluations are today commonly used in the decision‐making process in health care. Within the field of cost‐effectiveness analysis (CEA), there are several methodological and empirical issues that cause debate about what is included in the analysis. This thesis covers two such issues; costs and effects for relatives, and the valuation of individuals’ productivity loss due to morbidity. The objective of the thesis is to provide further knowledge about what should be included in CEAs which take a societal approach. The papers that the thesis is based on, four in total, examine the theoretical aspects of the studied issues and test these aspects empirically. Three different data materials were used. The CEA and the estimation of costs and effects are central in all the papers. The outcome measure used is quality‐adjusted life years (QALYs).The relatives of an individual with a disease or disability often provide informal care, and there may also be concomitant effect on their own well‐being. Nevertheless, the costs and effects for the relatives are generally excluded from CEAs, and there are few guidelines for how to include relatives’ effects. This thesis suggests the use of a new measure, R‐QALYs, which can be used both to visualise relatives’ effects and to include them in the analysis. We found that while the EQ‐5D instrument can be used to capture some of the relatives’ effects, it most likely misses a number of important attributes, for example altruistic preferences. Methods of eliciting R‐QALY weights include direct valuation methods and indirect methods, using existing relativerelated instruments. However, none of these methods are without difficulties, and there is a need for more studies on estimating valid relatives’ effects. Another possible approach with high potential is to use monetary measurements for both the costs and effects relevant to relatives.The results also show that income affects the QALY weights if the individuals include the utility generated by consumption within their QALY weights. The empirical tests showed that a majority of individuals do not consider their own income when they value health states. An explicit instruction to take income into account seemed to affect the valuation of those health states that were assumed to have consequences on the ability to perform daily activities. These findings give support for including the productivity costs caused by morbidity in the analysis; as these costs are not, or are only to a minor extent, implicitly incorporated in individuals’ QALY weights. The loss of leisure time, however, is captured in the QALY weight, and care must be taken to avoid double counting this loss in the analysis.The results of CEAs will only be partial if relatives’ costs and effects and the costs of individuals’ productivity loss are excluded for health interventions where they are assumed to be of significant importance.
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| 5. |
- Thomas, Kristin, 1978-
(författare)
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Implementation of coordinated healthy lifestyle promotion in primary care : Process and outcomes
- 2015
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Implementation of healthy lifestyle promotion in routine primary has been suboptimal. There is emerging evidence that coordinating care can improve the efficiency and quality of care. However, more research is needed on the implementation of coordinated care in healthy lifestyle promotion, the role of patients in implementation and the long-term outcomes of implementation efforts.Overall aim: To investigate the implementation of coordinated healthy lifestyle promotion in primary care in terms of process and outcomes, from the perspectives of both staff and patients.Methods: In 2008, Östergötland county council commissioned primary care centres to implement a coordinated care initiative, lifestyle teams, to improve healthy lifestyle promotion routines. A lifestyle team protocol stipulated centres to: (1) create multi-professional teams, (2) appoint team managers, (3) hold team meetings, and (4) create in-house referral routines for at-risk patients. Paper I investigated the implementation process of three lifestyle teams during a two year period using a mixed method, convergent parallel design. A proposed theory of implementation process was used to analyse data from manager interviews, documents and questionnaires. Paper II explored patients’ role in implementation using grounded theory. Interview data from patients with varied experience of promotion was used. Paper III investigated implementation outcomes using a quasi-experimental, cross-sectional design that compared three intervention centres (lifestyle teams) with three control centres (no teams). Data were collected by staff and patient questionnaires and manager interviews at 3 and 5 years after commissioning. The RE-AIM framework was modified and used to define outcome variables: Reach of patients, Effectiveness (attitudes and competency among staff), Adoption among staff, Implementation fidelity to the lifestyle team protocol, and Maintenance of the results at 5-year follow-up.Results: Paper I: The implementation process was complex including multiple innovation components and groups of adopters. The conditions for implementation, e.g. resources varied between staff and team members which challenged the embedding of the teams and new routines. The lifestyle teams were continuously redefined by team members to accommodate contextual factors, features of the protocol and patients. The lifestyle team protocol presented an infrastructure for practice at the centres. Paper II: A grounded theory about being healthy with three interconnected subcategories emerged from data: (1) conditions, (2) managing, and (3) interactions regarding being healthy. Being healthy represented a process of approaching a health ideal which occurred simultaneously with, and could contradict, a process of maximizing well-being. A typology of four patient types (resigned, receivers, co-workers, and leaders) illustrated how processes before, during and after healthy lifestyle promotion were interconnected. Paper III: Reach: significantly more patients at control centres received promotion compared to intervention centres at 3-year (48% and 41% respectively) and 5-year followups (44% and 36% respectively). Effectiveness: At 3-year follow-up, after controlling for clustering by centres, intervention staff were significantly more positive concerning perceived need for lifestyle teams; that healthy lifestyle promotion was prioritized at their centre and that there was adequate competency at individual and centre level regarding lifestyle promotion. At 5-year follow-up, significant differences remained regarding prioritization of lifestyle promotion at centre level. The majority of both intervention and control staff were positive towards lifestyle promotion. Adoption: No significant differences were found between control and intervention centres at 3 years (59% and 47% respectively) or at 5 years (45% and 36% respectively). Implementation fidelity: all components of the lifestyle team protocol had been implemented at all the intervention centres and at none of the control centres.Conclusions: The implementation process was challenged by a complex interaction between groups of staff, innovation components and contextual factors. Although coordinated care are used for other conditions in primary care, the findings suggest that it is difficult to adopt similar routines for healthy lifestyle promotion. Findings suggest that the lifestyle team protocol did not fully consider social components of coordinated care or the varied conditions for change exhibited by adopters. Patients can be seen as coproducing implementation of healthy lifestyle promotion.
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