Dataset Information

A systematic review of dimensions evaluating patient experience in chronic illness.

ABSTRACT:

Background

Living with a chronic disease often means experiencing chronic treatments and regular multidisciplinary monitoring as well as a profound life-changing experience which may impact all aspects of a patients life. The patient experience of chronic disease is frequently assessed by patient reported measures (PRMs) which incorporate patients perspectives to better understand how illness, treatment and care impact the entirety of a patient's life. The purpose of this review was to collect and review different kinds of available PRM instruments validated for chronic patients, to produce an inventory of explored concepts in these questionnaires and to identify and classify all dimensions assessing chronic patients experience.

Methods

A systematic review of PRM instruments validated for chronic patients was conducted from three databases (Medline, the Cochrane library, and Psycinfo). Articles were selected after a double reading and questionnaires were classified according to their targeted concept. Then, all dimensions of the questionnaires were clustered into different categories.

Results

107 primary validation studies of PRM questionnaires were selected. Five kinds of instruments were recorded: 1) Questionnaires assessing health related quality of life or quality of life; 2) Instruments focusing on symptoms and functional status; 3) Instruments exploring patients' feelings and attitude about illness; 4) Questionnaires related to patients' experience of treatment or healthcare; 5) Instruments assessing patients attitudes about treatment or healthcare. Twelve categories of dimensions were obtained from these instruments.

Conclusions

This review provided an overview of some of the dimensions used to explore chronic patient experience. A large PRM diversity exists and none of the reviewed and selected questionnaires covered all identified categories of dimensions of patient experience of chronic disease. Furthermore, the definition of explored concepts varies widely among researchers and complex concepts often lack a clear definition in the reviewed articles. Before attempting to measure chronic patient experience, researchers should construct appropriate instruments focusing on well-defined concepts and dimensions encompassing patient's personal experience, attitude and adaptation to illness, treatment or healthcare.

SUBMITTER: Forestier B

PROVIDER: S-EPMC6341593 | biostudies-literature | 2019 Jan

REPOSITORIES: biostudies-literature

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Publications

A systematic review of dimensions evaluating patient experience in chronic illness.

Forestier Bastien B Anthoine Emmanuelle E Reguiai Ziad Z Fohrer Cécile C Blanchin Myriam M

Health and quality of life outcomes 20190121 1

<h4>Background</h4>Living with a chronic disease often means experiencing chronic treatments and regular multidisciplinary monitoring as well as a profound life-changing experience which may impact all aspects of a patients life. The patient experience of chronic disease is frequently assessed by patient reported measures (PRMs) which incorporate patients perspectives to better understand how illness, treatment and care impact the entirety of a patient's life. The purpose of this review was to c ...[more]

PMID: 30665417

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Project description:BackgroundOne of the essential elements of a strategic approach to improving patients' experience is to measure and report on patients' experiences in real time. Real-time feedback (RTF) is increasingly being collected using digital technology; however, there are several factors that may influence the success of the digital system.ObjectiveThe aim of this review was to evaluate the digital maturity and patient acceptability of real-time patient experience feedback systems.MethodsWe systematically searched the following databases to identify papers that used digital systems to collect RTF: The Cochrane Library, Global Health, Health Management Information Consortium, Medical Literature Analysis and Retrieval System Online, EMBASE, PsycINFO, Web of Science, and CINAHL. In addition, Google Scholar and gray literature were utilized. Studies were assessed on their digital maturity using a Digital Maturity Framework on the basis of the following 4 domains: capacity/resource, usage, interoperability, and impact. A total score of 4 indicated the highest level of digital maturity.ResultsRTF was collected primarily using touchscreens, tablets, and Web-based platforms. Implementation of digital systems showed acceptable response rates and generally positive views from patients and staff. Patient demographics according to RTF responses varied. An overrepresentation existed in females with a white predominance and in patients aged ?65 years. Of 13 eligible studies, none had digital systems that were deemed to be of the highest level of maturity. Three studies received a score of 3, 2, and 1, respectively. Four studies scored 0 points. While 7 studies demonstrated capacity/resource, 8 demonstrated impact. None of the studies demonstrated interoperability in their digital systems.ConclusionsPatients and staff alike are willing to engage in RTF delivered using digital technology, thereby disrupting previous paper-based feedback. However, a lack of emphasis on digital maturity may lead to ineffective RTF, thwarting improvement efforts. Therefore, given the potential benefits of RTF, health care services should ensure that their digital systems deliver across the digital maturity continuum.

Project description:BACKGROUND:The older adult population (65 years or older) in the United States is growing, and it is important for communities to consider ways to support the aging population. Patient portals and electronic personal health records (ePHRs) are technologies that could better serve populations with the highest health care needs, such as older adults. OBJECTIVE:The aim of this study was to assess the existing research landscape related to patient portal and ePHR use and experience among older adults and to understand the benefits and barriers to older adults' use and adoption of patient portals and ePHRs. METHODS:We searched six pertinent bibliographic databases for papers, published from 2006 to 2016 and written in English, that focused on adults 60 years or older and their use of or experience with patient portals or ePHRs. We adapted preferred reporting items for systematic reviews and meta-analyses (PRISMA) guidelines to review papers based on exclusion and inclusion criteria. We then applied thematic analysis to identify key themes around use, experience, and adoption. RESULTS:We retrieved 199 papers after an initial screening and removal of duplicate papers. Then we applied an inclusion and exclusion criteria, resulting in a final set of 17 papers that focused on 15 separate projects. The majority of papers described studies involving qualitative research, including interviews and focus groups. They looked at the experience and use of ePHRs and patient portals. Overall, we found 2 main barriers to use: (1) privacy and security and (2) access to and ability to use technology and the Internet. We found 2 facilitators: (1) technical assistance and (2) family and provider advice. We also reported on older adults' experience, including satisfaction with the system and improvement of the quality of their health care. Several studies captured features that older adults wanted from these systems such as further assistance managing health-related tasks and contextual health advice and tips. CONCLUSIONS:More research is needed to better understand the patient portal experience among older adults from initial use to adoption. There are also opportunities to explore the role of design in addressing barriers and supporting facilitators to patient portal and ePHR use. Finally, the future use of these systems by older adults should be anticipated and considered in the design process.

Project description:To identify actionable processes of care, quality indicators, or performance measures and their evidence base relevant to patients with persistent or chronic critical illness and their family members including themes relating to patient/family experience. Data Sources:Two authors independently searched electronic, systemic review, and trial registration databases (inception to November 2016). Study Selection:We included studies with an ICU length of stay of greater than or equal to 7 days as an inclusion criterion and reported actionable processes of care; quality improvement indicators, measures, or tools; or patient/family experience. We excluded case series/reports of less than 10 patients. Data Extraction:Paired authors independently extracted data and performed risk of bias assessment. Data Synthesis:We screened 13,130 references identifying 114 primary studies and 102 relevant reviews. Primary studies reported data on 24,252 participants; median (interquartile range) sample size of 70 (32-182). We identified 42 distinct actionable processes of care, the most commonly investigated related to categories of 1) weaning methods (21 studies; 27 reviews); 2) rehabilitation, mobilization, and physiotherapy (20 studies; 40 reviews); and 3) provision of information, prognosis, and family communication (14 studies; 11 reviews). Processes with limited evidence were generally more patient-centered categories such as communication, promotion of sleep, symptom management, or family support. Of the 21 randomized controlled trials, only two were considered at low risk of bias across all six domains, whereas just two cohort studies and one qualitative study were considered of high quality. Conclusions:We identified 42 distinct actionable processes of care relevant to patients with persistent or chronic critical illness and their families, with most frequently studied processes relating to weaning, rehabilitation/mobilization, and family communication. Qualitative studies highlighted the need to address psychologic needs and distressing symptoms as well as enabling patient communication. Our findings are informative for clinicians and decision-makers when planning high-quality patient and family-focused care.

Dataset Information

A systematic review of dimensions evaluating patient experience in chronic illness.

Background

Methods

Results

Conclusions

Publications

A systematic review of dimensions evaluating patient experience in chronic illness.

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