Development of a Self-Care Questionnaire for Clinical Assessment of Self-care in Patients with Inflammatory Bowel Disease: A Psychometric Evaluation

Background: Patients with inflammatory bowel disease have lifelong needs to learn how to manage their symptoms and life situation. The range of actions that patients take in order to manage daily life and maintain health is referred to as self-care. Assessment of self-care inpatients with inflammatory bowel disease could allow targeted support and education by health care professionals.There are no existing measures assessing self-care in patients with inflammatory bowel disease. Objectives: The aim was to develop and evaluate the self-care questionnaire for assessment of self-care among patients with inflammatory bowel disease. Methods: Qualitative and quantitative methods were used to develop inflammatory bowel disease self-care questionnaire. The development and evaluation process was performed in three phases: (1) item generation based on interviews with patients with inflammatory bowel disease(n=20), (2) content validation in a panel of experts (n=6) and patients(n=100) assessed with the content validity index, cognitive interviews and quantifying and ranking the items to determine the usability of the questionnaire, and (3) final evaluation through a pilot study (n=93) with test-retest evaluation (n=50). An expert review group of three nurses and one physician continuously discussed the result during the development process. Results: A total of 91 patients with Crohn\u27s disease and 102 with ulcerative colitis participated. The final self-care questionnaire consists of 22 items. Assessment of content validity indicated that the items were adequate and easy to understand. Test-retest reliability was confirmed with intraclass correlations above 0.6 after a three week interval, for all items except one. Conclusion: An inflammatory bowel disease-specific self-care questionnaire was developed using structured methods. The evaluation indicated good validity and reliability. The questionnaire may be a useful tool to assess the ability of patients with inflammatory bowel disease to perform routine self-care

Intrinsic Elicitation : A Model and Design Approach for Games Collecting Human Subject Data

Applied games are increasingly used to collect human subject data such as people’s performance or attitudes. Games a ord a motive for data provision that poses a validity threat at the same time: as players enjoy winning the game, they are motivated to provide dishonest data if this holds a strategic in-game advantage. Current work on data collection game design doesn’t address this issue. We therefore propose a theoretical model of why people provide certain data in games, the Rational Game User Model. We derive a design approach for human subject data collection games that we call Intrinsic Elicitation: data collection should be integrated into the game’s mechanics such that honest responding is the necessary, strategically optimal, and least e ortful way to pursue the game’s goal. We illustrate the value of our approach with a sample analysis of the data collection game Urbanology

Development and validation of REAGERA-P, a new questionnaire to evaluate health care provider preparedness to identify and manage elder abuse

BACKGROUND: Elder abuse is prevalent and associated with morbidity but often goes unnoticed in health care. Research on the health care response to victims calls for valid measurements. This article describes the development and validation of a questionnaire to evaluate health care provider preparedness to care for older adults subjected to abuse, the REAGERA-P (Responding to Elder Abuse in GERiAtric Care - Provider questionnaire). METHOD: REAGERA-P was developed in phase I. The questionnaire includes a case vignette, self-efficacy scales for identifying and managing elder abuse cases and cause for concern as well as organizational barriers when talking with older patients about abuse. Content validity was ensured by a review committee, and cognitive interviews were conducted to ensure face validity and to examine cognitive processes to ensure comprehension. REAGERA-P was then administered to health care providers (n = 154, response rate 99 %) to test for construct validity. Factor analysis was performed, and internal consistency was tested for the self-efficacy scales. Convergent validity was tested by investigating associations between relevant variables. Some items were revised in phase II, and new cognitive interviews were performed. Parts of the questionnaire were tested for responsiveness by administering it to medical interns (n = 31, response rate 80 %) before and after an educational intervention. RESULTS: REAGERA-P showed good content and face validity. The factor analysis revealed two factors: one for asking questions about abuse (Cronbach's α = 0.75) and one for managing the response to the questions (Cronbach's α = 0.87). Results suggest good convergent validity for the self-efficacy scales and for questions about cause for concern and organizational barriers. The responsiveness of the self-efficacy scales was good: the mean on the scale for asking questions (range 0-30) was 15.0 before the intervention and 21.5 afterwards, the mean on the scale for managing the response (range 0-50) was 22.4 before the intervention and 32.5 afterwards. CONCLUSION: REAGERA-P is a new questionnaire that can be used to evaluate health care provider preparedness to identify and manage cases of elder abuse, including educational interventions conducted among staff to improve health care responses to victims of elder abuse. This initial testing of the questionnaire indicates that the REAGERA-P has good validity.Funding: Swedish Crime Victim Compensation and Support Authority [3322/2017, 2944/2018, 03384/2019]; Region Ostergotland [RO-908641]; Linkoping University</p

Can incentives undermine intrinsic motivation to participate in epidemiologic surveys?

Response rates to surveys are decreasing. The purpose of this study was to evaluate the use of lottery tickets as incentives in an epidemiologic control group. A self-administered questionnaire was sent to parents in the municipality of Stockholm, Sweden, who were to be used as a control group in a study addressing stress in parents of children with cancer. A stratified random sample of 450 parents were randomized into three incentive groups: (a) no incentive; (b) a promised incentive of one lottery ticket to be received upon reply; (c) a promised incentive of one lottery ticket to be received upon reply and an additional lottery ticket upon reply within 1 week. The overall response rate across the three groups was 65.3%. The response rate was highest in the no incentive group (69.3%) and lowest in the one plus one lottery ticket group (62.0%). In a survival analysis, the difference between the two response curves was significant by the log-rank test (P = 0.04), with the no incentive group having a shorter time to response than the incentive group. Our findings suggest that the use of lottery tickets as incentives to increase participation in a mail questionnaire among parents may be less valuable or even harmful. Incentives may undermine motivation in studies in which the intrinsic motivation of the respondents is already high.The original publication is available at www.springerlink.com:Marika Wenemark, Åsa Vernby and Annika Lindahl Norberg, Can incentives undermine intrinsic motivation to participate in epidemiologic surveys?, 2010, EUROPEAN JOURNAL OF EPIDEMIOLOGY, (25), 4, 231-235.http://dx.doi.org/10.1007/s10654-010-9434-8Copyright: Springer Science Business Mediahttp://www.springerlink.com

Respondent Satisfaction and Respondent Burden among Differently Motivated Participants in a Health-Related Survey

Response rates in surveys have declined in many countries over the last decade. Reasons for refusal by nonrespondents have been discussed in many studies, but less attention has been paid to motivation among respondents who do take part. One theoretical framework for studying motivation is self-determination theory, which distinguishes between extrinsic and intrinsic motivation. This article describes respondents' experiences of participating in a self-administered health-related survey. Qualitative content analysis was used to analyze data from semistructured telephone interviews with 30 Swedish respondents aged 45–64 years. The results show a broad spectrum of positive as well as negative aspects of survey participation.The final, definitive version of this paper has been published in:Field Methods, (22), 4, 378-390, 2010.Marika Wenemark, Gunilla Hollman Frisman, Tommy Svensson and Margareta Kristenson, Respondent Satisfaction and Respondent Burden among Differently Motivated Participants in a Health-Related Surveyhttp://dx.doi.org/10.1177/1525822X10376704by SAGE Publications Ltd, All rights reserved.http://www.uk.sagepub.com

Preference-based patient participation for most, if not all: A cross-sectional study of patient participation amongst persons with end-stage kidney disease

Background Patient participation is considered central for good healthcare. Yet, the concept is not fully understood when it comes to patients experiences of participation in conjunction with their preferences, particularly in long-term healthcare. The aim of this study was to investigate the extent and variation of preference-based patient participation in patients with end-stage kidney disease (ESKD). Methods A cross-sectional study was conducted with 346 patients in renal care. The main variables were patients preferences for and experiences of patient participation, determined using the Patient Preferences for Patient Participation tool, the 4Ps. Analyses identified the degree of match between preferences and experiences, that is, the preference-based patient participation measure. Results Overall, 57%-84% of the patients reached a sufficient level of preference-based patient participation on the items, while 2%-12% reached an insufficient level. A mismatch indicated either less or more participation than preferred; for example, 40% had less experience than preferred for taking part in planning, and 40% had more than preferred for managing treatment. Conclusion This study shows that, although many patients reach a sufficient level of preference-based patient participation, this is not the case for all patients and/or attributes. Further opportunities for a mutual understanding of patients preferences are needed for healthcare professionals to support person-centred patient participation. Patient or Public Contribution The 4Ps is manufactured in collaboration with people with experience of the patient role, and persons living with ESKD were engaged in identifying their preferences and experiences of participation in renal care.Funding Agencies|Forskningsradet i Sydostra Sverige [930678]; Njurfonden [F2018-0036]</p

Measuring psychosocial factors in health surveys using fewer items

The present study investigated the possibility of reducing length of psychosocial scales, while maintaining validity, using easily manageable techniques. Data were collected 2003-2004 in a Swedish general population; n = 1007, ages 45-69, 50% women. Eight psychosocial scales were reduced from 6-20 to 3-7 items maintaining Cronbachs alpha &amp;gt;0.7 and correlation coefficients between full and reduced scales &amp;gt; 0.85. Relationships to biomarkers for inflammation, self-rated health and 8-year incidence of coronary heart disease showed no difference between full and reduced scales. It was possible, using these easily manageable methods, to reduce scale length without threatening validity for use in population surveys

Development and evaluation of the EOL-ICDQ as a measure of experiences, attitudes and knowledge in end-of-life in patients living with an implantable cardioverter defibrillator

Background: Due to extended indications and resynchronization therapy, many implantable cardioverter defibrillator (ICD) recipients will experience progressive co-morbid conditions and will be more likely to die of causes other than cardiac death. It is therefore important to elucidate the ICD patients’ preferences when nearing end-of-life. Instead of avoiding the subject of end-of-life, a validated questionnaire may be helpful to explore patients’ experiences and attitudes about end-of-life concerns and to assess knowledge of the function of the ICD in end-of-life. Validated instruments assessing patients’ perspective concerning end-of-life issues are scarce.                     Aim: The purpose of this study was to develop and evaluate respondent satisfaction and measurement properties of the ‘Experiences,  Attitudes and Knowledge of End-of-Life Issues in Implantable Cardioverter Defibrillator Patients’ Questionnaire’ (EOL-ICDQ).                     Methods: The instrument was tested for validity, respondent satisfaction, and for homogeneity and stability in the Swedish language. An English version of the EOL-ICDQ was validated, but has not yet been pilot tested.                     Results: The final instrument contained three domains, which were clustered into 39 items measuring: experiences (10 items), attitudes (18 items), and knowledge (11 items) of end-of-life concerns in ICD patients. In addition, the questionnaire also contained items on socio-demographic background (six items) and ICD-specific background (eight items). The validity and reliability properties were considered sufficient.                     Conclusions: The EOL-ICDQ has the potential to be used in clinical practice and future research. Further studies are needed using this instrument in an Anglo-Saxon context with a sample of English-speaking ICD recipients.