scholarly journals Development and validation of the Swedish national stroke register Riksstroke’s questionnaires in patients at 3 and 12 months after stroke: a qualitative study

BMJ Open ◽  
2018 ◽  
Vol 8 (2) ◽  
pp. e018702
Author(s):  
Susanne Palmcrantz ◽  
Disa K Sommerfeld
Keyword(s):  
Focus Groups ◽  
Community Support ◽  
Stroke Care ◽  
Face Validity ◽  
Work Place ◽  
Clinical Expertise ◽  
Extensive Experience ◽  
Patient Interviews ◽  
Patient Reported ◽  
Stroke Register

ObjectivesBecause healthcare and community organisations and treatment methods are always changing, continuous changes might also be needed in questionnaires that register patient-reported outcomes (PRO) and patient-reported experiences (PRE) of healthcare interventions and community support. Thus, the aim of this study was to test the content and face validity, including the readability, of two questionnaires used by the Swedish national stroke register Riksstroke to register PRO and PRE at 3 and 12 months poststroke.DesignClinicians’ and patients’ knowledge and experiences of current care, rehabilitation, community support and functioning after stroke as well as comments noted regarding the content and layout of the questionnaires were retrieved in focus-groups with expert clinicians and in patient interviews analysed with content analysis. A workgroup of experts with experience in stroke care, rehabilitation and research repeatedly revised the questionnaires regarding content, layout and consistency throughout the validation process.ParticipantsThe participants included allied healthcare professionals, nurses and physicians with extensive experience of working with stroke care and rehabilitation (expert clinicians) as well as patients who had suffered a stroke 3 or 12 months earlier and who were purposefully selected among those who had completed and returned the 3-month questionnaire.SettingExpert clinicians met at their work place in focus-groups. Patients were interviewed where they resided, that is, in their home or nursing home, including rural, town and city areas in Sweden.ResultsBased on clinical expertise and comments from the patients (n=47), the questionnaires were revised and then found to be valid in terms of content validity and face validity, including readability.ConclusionsThe present evaluation emphasises the need for testing aspects of validity, including readability, of questionnaires addressing PRO and PRE and for the recurrent revision of such questionnaires in order to maintain their validity in a society undergoing constant change.

Improving the Diagnosis of Fibromyalgia (FM) in Europe: Identification of Factors that Aid in the Detection of FM

2009 ◽  
Vol 24 (S1) ◽  
pp. 1-1
Author(s):  
E. Serra ◽  
S. Perrot ◽  
I. Guillemin ◽  
C. Dias Barbosa ◽  
B. Arnould ◽  
...  
Keyword(s):  
Focus Groups ◽  
Screening Tool ◽  
Personal History ◽  
Clinical Expertise ◽  
Face To Face ◽  
Patient Interviews ◽  
French And English ◽  
Key Issues ◽  
English Speaking ◽  
High Consistency

Aim:Prior to facing the challenges of FM management, an initial diagnosis must be made. To guide general practitioners (GPs) in the early detection of FM in Europe, we developed an easy-to-use screening tool specific to FM.Method:A European multidisciplinary expert group was constituted with the aim of providing clinical expertise, defining methodology, and identifying key issues around the detection of FM. Three conceptual models describing factors that may contribute to the identification of FM patients were derived from; a) a comprehensive literature review, 2) clinician focus groups (N=6), and 3) face-to-face interviews with German, French, and English-speaking patients (N=29) conducting by psychologists to explore their attitudes and perceptions of the disease. A FM screening tool was developed in all three languages and tested for comprehension and applicability in FM-diagnosed and FM-suspected patients.Results:The models derived from the literature, clinician focus groups, and FM patient interviews showed high consistency. The resulting FM screening tool is comprised of 14 questions that describe patients' pain, fatigue, associated symptoms, impact on everyday life, personal history, and attitudes towards their FM.Conclusion:Based on this qualitative study, the detection of FM is likely to require the assessment of multiple psychological factors in addition to symptoms, including patient reporting of personal history and patient behaviour. The quantitative validation of these findings is currently underway.

Improving the Diagnosis of Fibromyalgia (FM) in Europe: Identification of Factors that Aid in the Detection of FM

2009 ◽  
Vol 24 (S1) ◽  
pp. 1-1
Author(s):  
E. Serra ◽  
S. Perrot ◽  
I. Guillemin ◽  
C. Dias Barbosa ◽  
B. Arnould ◽  
...  
Keyword(s):  
Focus Groups ◽  
Screening Tool ◽  
Personal History ◽  
Clinical Expertise ◽  
Face To Face ◽  
Patient Interviews ◽  
French And English ◽  
Key Issues ◽  
English Speaking ◽  
High Consistency

Aim:Prior to facing the challenges of FM management, an initial diagnosis must be made. To guide general practitioners (GPs) in the early detection of FM in Europe, we developed an easy-to-use screening tool specific to FM.Method:A European multidisciplinary expert group was constituted with the aim of providing clinical expertise, defining methodology, and identifying key issues around the detection of FM. Three conceptual models describing factors that may contribute to the identification of FM patients were derived from; a) a comprehensive literature review, 2) clinician focus groups (N=6), and 3) face-to-face interviews with German, French, and English-speaking patients (N=29) conducting by psychologists to explore their attitudes and perceptions of the disease. A FM screening tool was developed in all three languages and tested for comprehension and applicability in FM-diagnosed and FM-suspected patients.Results:The models derived from the literature, clinician focus groups, and FM patient interviews showed high consistency. The resulting FM screening tool is comprised of 14 questions that describe patients’ pain, fatigue, associated symptoms, impact on everyday life, personal history, and attitudes towards their FM.Conclusion:Based on this qualitative study, the detection of FM is likely to require the assessment of multiple psychological factors in addition to symptoms, including patient reporting of personal history and patient behaviour. The quantitative validation of these findings is currently underway.

scholarly journals “We are very individual”: Anticipated effects on stroke survivors of using their person-generated health data (Preprint)

2019 ◽  
Author(s):  
Gerardo Luis Dimaguila ◽  
Frances Batchelor ◽  
Mark Merolli ◽  
Kathleen Gray
Keyword(s):  
Health Care ◽  
Health Services ◽  
Focus Groups ◽  
Health Care Providers ◽  
Digital Health ◽  
Stroke Care ◽  
Health Data ◽  
Stroke Survivors ◽  
Care Providers ◽  
Patient Reported

BACKGROUND Person-generated health data (PGHD) are produced by people when they use health information technologies. People who use PGHD may have changes in their engagement with their own health care, their relationship with their healthcare providers, and their sense of social support and connectedness. Research into evaluating those reported effects however, has not kept up; thus a method for developing patient-reported outcome measures (PROMs) of utilising PGHD, called the PROM-PGHD Development Method, was previously designed and applied to the exemplar case of Kinect-based stroke rehabilitation systems (K-SRS). A key step of the method ensures that the patient’s voice is included. Allowing stroke survivors to participate in the development and evaluation of health services and treatment can inform health care providers on decisions about stroke care, and thereby improve health outcomes. Moreover, eliciting the input of stroke survivors is important because there could be differences in their perspectives and that of their care providers, regarding treatment and management. OBJECTIVE This paper presents the perspectives of stroke survivors and clinicians on the anticipated effects of stroke survivors’ use of PGHD from a poststroke simulated rehabilitation technology. METHODS This study gathered the perspectives of six stroke survivors and five clinicians through three focus groups and three interviews, recruited for convenience. In the stroke survivors’ focus groups, participants were asked to give their perspectives on how using the PGHD from Jintronix may affect their outcomes; while in the clinicians’ focus group, clinicians were asked for their perspectives on how PGHD use may affect the outcomes of stroke survivors. Participants were also asked questions intended to encourage them to comment on the initial items of the PROM-PGHD. Deductive thematic analysis was performed. RESULTS Survivors and clinicians had varying perspectives in three of the six themes presented, and puts emphasis on the importance of allowing stroke survivors to participate in the evaluation of digital health services. However, the potential for tensions to occur between the needs and preferences of patients and their care providers could be reduced through a similar understanding of health treatment goals. This paper has further demonstrated that outcomes of utilising PGHD can be measured. For instance, stroke survivors described that using PGHD could result in positive, negative, and nil effects on their health behaviours. CONCLUSIONS This study is the first to gather and compare the perspectives of stroke survivors and clinicians, in order to develop a PROM-PGHD for a simulated rehabilitation system. The reported PGHD utilisation outcomes would directly inform the development of a PROM-PGHD for K-SRS, of which this paper is a key step. Additionally, they could help inform health care providers on decisions about stroke care. This is particularly relevant in the area of poststroke simulated rehabilitation technologies.

scholarly journals Factors Supporting and Inhibiting Adherence to HIV Medication Regimen in Women: A Qualitative Analysis of Patient Interviews

2015 ◽  
Vol 9 (1) ◽  
pp. 45-50 ◽  
Author(s):  
Oluwakemi Fagbami ◽  
Adetokunbo Oluwasanjo ◽  
Carrie Fitzpatrick ◽  
Rebecca Fairchild ◽  
Ann Shin ◽  
...  
Keyword(s):  
Qualitative Analysis ◽  
Social Factors ◽  
Virologic Failure ◽  
Community Support ◽  
Future Research ◽  
Hiv Positive ◽  
Medical Systems ◽  
Medication Regimen ◽  
Patient Interviews ◽  
Support Family

Adherence to antiretroviral therapy reduces morbidity and mortality; however rates of non-adherence are variable among women for unclear reasons. This study was a single-center qualitative analysis of interviews with 18 female HIV-positive non-adherent patients (defined by virologic failure) to explore psychosocial factors impacting adherence. Factors identified were categorized as promoting, inhibiting or having no effect on adherence. Three themes, characterized as social factors, illness factors and other societal pressures, were identified. Medical systems support, family support and compliance for children were most commonly identified as promoting adherence, while psychiatric comorbidities, lack of medical systems support and side effects were identified most often as inhibitors of adherence. While stigma was frequently identified, it was not seen as a barrier to adherence. Enhancing relationships between patients and their providers as well as their community support systems are critical avenues to pursue in improving compliance. Interventions to promote compliance are important avenues of future research.

Abstract WP247: Paramedic Perspectives on Prehospital Stroke Care: A Qualitative Analysis

Stroke ◽  
2016 ◽  
Vol 47 (suppl_1) ◽  
Author(s):  
J A Oostema ◽  
Maria Tecos ◽  
Deborah Sleight ◽  
Brian Mavis
Keyword(s):  
Qualitative Analysis ◽  
Focus Groups ◽  
Stroke Care ◽  
Final Diagnosis ◽  
Structured Interview ◽  
Time Frame ◽  
System Level ◽  
Stroke Patients ◽  
Interview Format ◽  
The Right

Introduction: Ischemic stroke patients who arrive by emergency medical service (EMS) receive faster emergency department evaluations and improved rates of thrombolytic treatment. However, EMS stroke recognition and compliance with prehospital stroke quality measures are inconsistent. We hypothesized that EMS stroke care is influenced by a complex interaction of knowledge, beliefs, and system-level variables that influence behavior. Methods: Focus groups of paramedics from a single urban/suburban county were assembled to discuss their experiences identifying and transporting stroke patients. Focus groups were conducted using a semi-structured interview format and audio recorded. Transcripts of focus groups were qualitatively analyzed to identify themes, subthemes, and patterns of paramedic responses. The Clinical Practice Guidelines Framework provided the initial coding scheme, which was modified during the coding process by three coders using grounded theory methods, who came to consensus on which codes to apply. Results: Three focus groups (n=13) were conducted to reach theme saturation. Overall, paramedics reported high confidence in clinical gestalt for assessing stroke patients and a strong desire to “do the right thing,” but were unfamiliar with published guidelines. Paramedics identified variability in the clinical presentations of stroke, inadequate or inconsistent hospital guidance, and lack of feedback regarding care as principle barriers to ideal prehospital stroke care. Participants reported conflicting hospital guidance regarding the appropriate time frame for a high priority transport and hospital prenotification. Feedback regarding final diagnosis was viewed as critical for developing improved clinical acumen. Direct to CT protocols were cited as an effective way to integrate EMS into hospital stroke response. Conclusion: In this qualitative analysis, paramedics expressed a desire for clear, hospital-directed guidance and consistent feedback regarding outcomes for suspected stroke patients.

scholarly journals Validating The Düsseldorf Orthorexie Scale (DOS) For Use In Adolescents Aged 14–17

2020 ◽  
Vol 4 (Supplement_2) ◽  
pp. 217-217
Author(s):  
Elizabeth King ◽  
Heidi Wengreen ◽  
April Litchford ◽  
Caitlyn Bailey ◽  
Chante Beck ◽  
...  
Keyword(s):  
Focus Group ◽  
Focus Groups ◽  
Key Words ◽  
School Health ◽  
Group Discussion ◽  
Face Validity ◽  
Effective Prevention ◽  
Funding Sources ◽  
Survey Questions ◽  
Dos Scale

Abstract Objectives To determine the face validity of the survey instrument, Düsseldorf Orthorexie Scale (DOS), in adolescents aged 14–17 years. The DOS has been validated for use in adults to identify individuals at-risk for symptoms and behaviors consistent with the condition of Orthorexia Nervosa (ON). This condition is characterized by a pathological obsession with healthy or “clean” eating which leads to psychological and physical impairment. Methods Researchers conducted seven focus groups with male and female students currently enrolled in a high school health class (n = 40; 11 males, 29 females aged 14–17). Participants first completed the DOS scale and then were asked to participate in a group discussion regarding their understanding of the meaning of the questions in the DOS survey. Focus groups were audio recorded, transcribed, and coded to identify recurring themes. Codes for each of the 10 questions in the DOS scale were analyzed to determine group understanding of key words identified for each question. Results Key words in the original DOS survey questions were in agreement with the codes identified from the transcript of the focus groups for eight of the 10 DOS survey questions. The key words in the other two questions (indulgence in question one and colleague in question seven) were either not understood by focus group population or would need to be altered due to incorrect or inadequate understanding by focus group participants. 38 participants completed the DOS (M = 18.5, SD = 4.88). 7.9% of participants DOS responses indicated they were at moderate (n = 2) or high (n = 1) risk of practicing orthorexic behavior. Conclusions The DOS scale demonstrated good face validity in an adolescent population and the modification of two questions may improve its face validity. Though our sample was small, results indicate that a sizeable proportion of adolescents may already be practicing orthorexic behaviors. This demonstrates a need for further research to be conducted on effective prevention and intervention strategies for this age group. Funding Sources The author(s) received no financial support for the research, authorship, and/or publication of this article.

scholarly journals The co-design approach in the MIWOCA project

2019 ◽  
Vol 29 (Supplement_4) ◽  
Author(s):  
A Frahsa ◽  
R Farquet ◽  
T Abel
Keyword(s):  
Health Care ◽  
Focus Groups ◽  
Healthcare System ◽  
Chronically Ill ◽  
Participatory Planning ◽  
Practical Training ◽  
Extensive Experience ◽  
Swiss Health ◽  
Care System

Abstract MIWOCA study group Background The project MIWOCA researches how chronically ill women of Portuguese, Turkish and German origin and women without a migration background subjectively experience, understand, interpret and use the Swiss health care system. Methods We conducted 48 qualitative semi-structured interviews with chronically ill women between the ages of 23 and 85 in Bern and Geneva (n = 36 with German, Portuguese and Turkish migrant backgrounds) and n = 12 Swiss women. In addition, n = 12 stakeholder interviews were conducted (doctors, nurses, social workers, psychologists, physiotherapists). In focus groups with interviewed women in Bern and Geneva, results are reflected back, identified topics from the interviews prioritized and representatives named for the cooperative planning. In a participatory planning approach, affected women in the canton of Bern, together with stakeholders from the Swiss healthcare system selected by a systematic stakeholder analysis (e.g. Swiss Medical Association, Red Cross Switzerland, Spitex, Federal Office of Public Health), develop recommendations for improving the quality of care and concrete dissemination strategies. Results Interviewees had multiple and chronic diseases and resulting extensive experience with the Swiss healthcare system. Relevant aspects referred to issues such as quality of specific services, complexity of the healthcare system, costs of care, role of family and social support, and multidimensional stigmatization (migration, chronic illness, alleged overuse of the care system). Findings are incorporated in evidence briefs and narrative stories for focus groups and participatory planning. Conclusions MIWOCA contributes to a targeted and differentiated improvement of structures and options for action in health care for specific groups. Results will be relevant for planning in the health system and may be incorporated into academic teaching and practical training in PH, medicine and social sciences.

scholarly journals ‘We are very individual’: anticipated effects on stroke survivors of using their person-generated health data

2020 ◽  
Vol 27 (3) ◽  
pp. e100149
Author(s):  
Gerardo Luis Dimaguila ◽  
Frances Batchelor ◽  
Mark Merolli ◽  
Kathleen Gray
Keyword(s):  
Health Services ◽  
Information Technologies ◽  
Digital Health ◽  
Healthcare Providers ◽  
Health Behaviours ◽  
Stroke Care ◽  
Health Data ◽  
Care Process ◽  
Stroke Survivors ◽  
Patient Reported

BackgroundPerson-generated health data (PGHD) are produced by people when they use health information technologies. People who use PGHD may experience changes in their health and care process, such as engagement with their own healthcare, and their sense of social support and connectedness. Research into evaluating those reported effects has not kept up; thus, a method for measuring PGHD outcomes was previously designed and applied to the exemplar case of Kinect-based stroke rehabilitation systems. A key step of the method ensures that the patient’s voice is included. Allowing stroke survivors to participate in the development and evaluation of health services and treatment can inform healthcare providers on decisions about stroke care, and thereby improve health outcomes.ObjectiveThis paper presents the perspectives of stroke survivors and clinicians on the anticipated effects of stroke survivors’ use of PGHD from a poststroke simulated rehabilitation technology.MethodsThis study gathered the perspectives of stroke survivors and clinicians through three focus groups and three interviews, recruited for convenience. Participants were also asked questions intended to encourage them to comment on the initial items of the patient-reported outcome measure-PGHD. Deductive thematic analysis was performed.ResultsThis paper has further demonstrated that outcomes of using PGHD can be measured. For instance, stroke survivors described that using PGHD could result in positive, negative and nil effects on their health behaviours. Survivors and clinicians had varying perspectives in three of the six themes presented, and emphasise the importance of allowing stroke survivors to participate in the evaluation of digital health services.

Sign in / Sign up

Export Citation Format

Share Document