Dataset Information

Development of a patient-centred, patient-reported outcome measure (PROM) for post-stroke cognitive rehabilitation: qualitative interviews with stroke survivors to inform design and content.

ABSTRACT:

Background

Improving cognition is service users' top research priority for life after stroke, and future research should include outcomes that they deem important. Patient perspectives on outcomes are collected using patient-reported outcome measures (PROMs). There is currently no patient-centred PROM specific for cognitive rehabilitation trials.

Objective

Inform PROM development by exploring stroke survivor perspectives on the important, measurable impacts of persisting post-stroke cognitive problems.

Design

Qualitative semi-structured interviews in participants' homes.

Participants

Purposive sample of 16 cognitively impaired stroke survivors at least six months post-stroke.

Methods

Interviews used a schedule and communication aids developed through patient consultation. Interviews were transcribed verbatim with non-verbal communication recorded using field notes. Data were analysed using a framework approach to find commonalities to shape the focus and content of an outcome measure.

Results

Participants identified important impacts of their 'invisible' cognitive problems, outside of other stroke-related impairments. Cognitive problems exacerbated emotional issues and vice versa. Changes in self-identity and social participation were prominent. Impact was not spoken about in terms of frequency but rather in terms of the negative affect associated with problems; terms like 'bothered' and 'frustration' were often used.

Conclusions

The results support the development of a PROM specifically designed to address the impact of cognitive problems. It should: include items addressing a comprehensive range of cognitive skills; ask questions about mood, self-identity and social participation; use accessible wording that respondents understand and endorse; measure impact rather than frequency; and explore perceived impact on carers.

SUBMITTER: Patchick EL

PROVIDER: S-EPMC5810690 | biostudies-literature | 2015 Dec

REPOSITORIES: biostudies-literature

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Publications

Development of a patient-centred, patient-reported outcome measure (PROM) for post-stroke cognitive rehabilitation: qualitative interviews with stroke survivors to inform design and content.

Patchick Emma L EL Horne Maria M Woodward-Nutt Kate K Vail Andy A Bowen Audrey A

Health expectations : an international journal of public participation in health care and health policy 20141205 6

<h4>Background</h4>Improving cognition is service users' top research priority for life after stroke, and future research should include outcomes that they deem important. Patient perspectives on outcomes are collected using patient-reported outcome measures (PROMs). There is currently no patient-centred PROM specific for cognitive rehabilitation trials.<h4>Objective</h4>Inform PROM development by exploring stroke survivor perspectives on the important, measurable impacts of persisting post-stro ...[more]

PMID: 25483800

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Project description:Due to a lack of an appropriate disease-specific patient-reported outcome (PRO) instrument for chronic heart failure including its social support and treatment aspects in China, this study was performed to develop a patient-reported outcome measure (PROM) for patients with chronic heart failure and evaluate its reliability, validity, and feasibility.According to the standard PROM guidelines established by the Food and Drug Administration, an item pool was formed by reviewing a large amount of relevant literature and interviewing patients with chronic heart failure about their main symptoms. Thus, the primary scale was created after adjusting the items and language with the help of patients and experts in the field. Next, 155 patients from 8 hospitals in different districts were recruited for a pilot survey using questionnaires containing these items. The patients' responses were analyzed using the classical test theory and item response theory to select high-quality items and determine the subdomains of the scale. This was followed by a formal investigation in the same eight hospitals. In total, 360 patients and 100 healthy subjects were included to evaluate the reliability, validity, and feasibility of the items. Through this process, the final scale was established.The final scale comprised 12 subdomains with 57 items related to physical, psychological, social, and therapeutic areas. The data analysis results of the formal investigation showed that the PROM for chronic heart failure had good reliability, validity, and feasibility. Reliability was verified by Cronbach's alpha coefficient, which was 0.913 for the total scale, 0.903 for the physical domain, 0.941 for the psychological domain, 0.827 for the social domain, and 0.839 for the therapeutic domain. The construct validity results met the relative criteria of confirmatory factor analysis. Discriminant validity was represented by score comparisons of nine subdomains. The response rate and the effective rate of return of the CHF-PROM were 98.94% and 98.92%, respectively.The final scale coincides with the theoretical framework and better reflects the overall quality of life of patients with chronic heart failure. This scale can be used as a valid instrument to evaluate clinical treatment and clinical trials of chronic heart failure.

Project description:OBJECTIVES:Previous studies on patient-centred care (PCC) and its facilitators and barriers usually considered specific patient groups, healthcare settings and aspects of PCC or focused on expert perspectives. The objective of this study was to analyse patients' perspectives of facilitators and barriers towards implementing PCC. DESIGN:We conducted semistructured individual interviews with chronically ill patients. The interviewees were encouraged to share positive and negative experiences of care and the related facilitators and barriers in all settings including preventive, acute and chronic health issues. Interview data were analysed based on the concept of content analysis. SETTING:Interviews took place at the University Hospital Cologne, nursing homes, at participants' homes or by telephone. PARTICIPANTS:Any person with at least one chronic illness living in the region of Cologne was eligible for participation. 25 persons with an average age of 60 years participated in the interviews. The participants suffered from various chronic conditions including mental health problems, oncological, metabolic, neurological diseases, but also shared experiences related to acute health issues. RESULTS:Participants described facilitators and barriers of PCC on the microlevel (eg, patient-provider interaction), mesolevel (eg, health and social care organisation, HSCO) and macrolevel (eg, laws, financing). In addition to previous concepts, interviewees illustrated the importance of being an active patient by taking individual responsibility for health. Interviewees considered functioning teams and healthy staff members a facilitator of PCC as this can compensate stressful situations or lack of staff to some degree. A lack of transparency in financing and reimbursement was identified as barrier to PCC. CONCLUSION:Individual providers and HSCOs can address many facilitators and barriers of PCC as perceived by patients. Large-scale changes such as reduction of administrative barriers, the expansion of care networks or higher mandatory nurse to patient ratios require political action and incentives. TRIAL REGISTRATION NUMBER:DRKS00011925.

Dataset Information

Development of a patient-centred, patient-reported outcome measure (PROM) for post-stroke cognitive rehabilitation: qualitative interviews with stroke survivors to inform design and content.

Background

Objective

Design

Participants

Methods

Results

Conclusions

Publications

Development of a patient-centred, patient-reported outcome measure (PROM) for post-stroke cognitive rehabilitation: qualitative interviews with stroke survivors to inform design and content.

Similar Datasets

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