Peer-reviewed studies that reported the psychometric properties of a patient reported measure or PROM that assessed patient empowerment were retrieved. There’s no single, agreed-upon definition of what it is or how to get to it. This systematic review adds to the findings of Herbert et al [19] and highlights the need for a definitive measure of patient empowerment. Testing of cross-cultural validity (box G) was only applicable for five studies, but was rated poor for three of those studies [28,38,41] and fair for the other two studies[39,42]. use of a decision support tool to promote patient empowerment. Distinct for our population of interest is the experience of continued insults and resultant losses that occur within short periods of time. For COSMIN criteria, the overall proportion of included studies that achieved a rating of ‘Excellent’, ‘Good’, ‘Fair’ or ‘Poor’, is presented for each methodological element (box) examined. Global Health Observatory data – life expectancy, The growing burden of chronic disease in America, Conceptualising patient empowerment: a mixed methods study, Assessment of patient empowerment-a systematic review of measures, Patient empowerment: reflections on the challenge of fostering the adoption of a new paradigm, Patient-physician role relationships and patient activation among individuals with chronic illness, The Diabetes Empowerment Scale: a measure of psychosocial self-efficacy, Self-management: enabling and empowering patients living with cancer as a chronic illness. 2. Contact us if you experience any difficulty logging in. Similarly, 24 studies reported on construct validity, with only a few negative ratings [35,37,38,51]. Thirty studies were identified assessing 19 measures of patient empowerment that could be used as PROMs, the earliest of which was published in 1999. ‘Personalised knowledge in theory and in practice’ and ‘Negotiating personal and healthcare relationships’ include features of empowerment conceptualised as being optional for patients to engage with and, when engaged, open to influence by patients themselves. Empowerment, when you are dying, includes the capacity to withstand insults and losses which may compromise, in particular, a patient’s self-identity. Available measures capture a diversity of constructs and have very limited evidence of two psychometric properties that are vital for PROMs, reliability and responsiveness, and no available measures have been tested for MID or MIC, also very important for any measure that is to be used as a PROM. I changed his antihypertensive medication. Why does patient activation matter? An example of this is demonstrated by Richardson et al. To capture generalisable features of empowerment in this patient group, we excluded studies with single decision-specific foci, for example, decisions to withdraw dialysis and advance care planning for single-disease groups. Journal Advances in Physiotherapy Volume 8, 2006 - Issue 1. A total of 20,591 papers were screened, but only 13 papers met our inclusion criteria after quality assessment (Figure 1). Our review found no evidence of attempts to incorporate patient empowerment into the design or evaluation of services that support people with advanced life-limiting illness. Structural validity (box E) was also assessed by most studies with only the study on the Genetic Counseling Outcome Scale [18] being rated as good and all other studies receiving poor [28,30,31,34,36,37,41] or fair ratings [16,17,29,32,35,38–40,42–44,46–53]. https://doi.org/10.1371/journal.pone.0126553.t004. ORCID iDsDominique Wakefield https://orcid.org/0000-0001-9800-0436, Lucy Selman https://orcid.org/0000-0001-5747-2699, Irene J Higginson https://orcid.org/0000-0003-1426-4923. View all Google Scholar citations for this article. Clinicians over-emphasising patient choice/autonomy in efforts to empower patients (e.g. For more information about PLOS Subject Areas, click Criteria developed by Terwee et al [23] to appraise the psychometric quality of questionnaires were used to assess the quality of the measures identified in this study. More research is needed to develop a clear definition of patient empowerment that could be operationalised to create a definitive, valid, reliable and responsive measure of patient empowerment. Self-care interventions for long-term conditions, sometimes called patient empowerment programmes, have been shown to improve mental health, doctor-patient communication, healthy eating, and patient self-efficacy [6,7], although the capacity of existing outcome measures to capture the patient benefits of these programmes has been questioned [8]. Little is known about the application or impact of empowerment strategies for patients with advanced, life-limiting illness(s). No, Is the Subject Area "Questionnaires" applicable to this article? Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article. It takes courage to stand up for patients' beliefs and wishes. The Center for Reviews and Dissemination (CRD) and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) recommends the use of checklists to appraise study quality [6]. Furthermore, the scientific quality of most instruments is low. Distribution of sex seems to quite representative across all studies. Ten of the studies were from the US, six from Sweden, four from the UK, three from China, three from Australia, and one each from Japan, Italy, Iran and Iceland. RESULTS Empowerment is more often defined according to some of its anticipated outcomes rather than to its very nature. Similarly, in the USA, the quality of patient centered care, including patient empowerment, may soon be linked to remuneration and improved legal protection for healthcare professionals [10,11]. Amir Abou Elnaga. Table 3. Of the 13 studies, 7 included participants with cancer diagnoses, while the remaining 6 included a mix of cancer and non-cancer patient groups. No, Is the Subject Area "Patients" applicable to this article? Patient empowerment in theory and practice: polysemy or cacophony? A pilot study, Patients’ experiences of a new integrated breathlessness support service for patients with refractory breathlessness: results of a postal survey, Self-management and transitions in women with advanced breast cancer, Randomized controlled trial of a prompt list to help advanced cancer patients and their caregivers to ask questions about prognosis and end-of-life care, Patients’ experiences and perspectives of multiple concurrent symptoms in advanced cancer: a semi-structured interview study, Ever decreasing circles: terminal illness, empowerment and decision-making, Understanding how a palliative-specific patient-reported outcome intervention works to facilitate patient-centred care in advanced heart failure: a qualitative study, Solicitude: balancing compassion and empowerment in a relational ethics of hope – an empirical-ethical study in palliative care, Palliative cancer patients’ experiences of participating in a lifestyle intervention study while receiving chemotherapy, Patient perspectives on participation in the ENABLE II randomized controlled trial of a concurrent oncology palliative care intervention: benefits and burdens, Why patients should be more empowered: a European perspective on lessons learned in the management of diabetes, Provider support in complementary and alternative medicine: exploring the role of patient empowerment, The importance of patient empowerment in health system reform, Effects of Patient Empowerment Programme (PEP) on clinical outcomes and health service utilization in type 2 diabetes mellitus in primary care: an observational matched cohort study, A new approach to eliciting patients’ preferences for palliative day care: the choice experiment method, Providing informal care in terminal illness: an analysis of preferences for support using a discrete choice experiment, The Journal of Alternative and Complementary Medicine, Patient empowerment, what does it mean for adults in the advanced stages of a life-limiting illness: A systematic review using critical interpretive synthesis, http://www.creativecommons.org/licenses/by-nc/4.0/, https://us.sagepub.com/en-us/nam/open-access-at-sage, www.who.int/gho/mortality_burden_disease/life_tables/situation_trends_text/, http://www.euro.who.int/__data/assets/pdf_file/0010/74656/E88086.pdf, http://www.crd.york.ac.uk/PROSPERO/display_record.asp?ID=CRD42016046113. Criteria assessed were: internal consistency, content validity, criterion validity, construct validity, reproducibility, responsiveness, floor and ceiling effects and interpretability. The views and opinions expressed are those of the authors and do not necessarily reflect those of the National Health Service, the National Institute of Health Research, Medical Research Council, Central Commissioning Facility, NIHR Evaluation, Trials and Studies Coordinating Centre, the National Institute of Health Research Programme Grants for Applied Research, or the Department of Health. There is no universally accepted measure of patient empowerment that can be used to evaluate and compare patient empowerment initiatives across different healthcare services, although some quite generic patient empowerment measures have been published recently [13,14]. investigated the relationship between hope and empowerment through interviews with 29 patients receiving specialist palliative care support. Data were of three types: patient quotes,27–29 the author’s words when discussing the study results25, 26, 29–33, 35–37 and the reported outcome/s of interventions. One of the included studies was conducted by the senior author (MMc). OBJECTIVE This paper examines how the term "empowerment" has been used in relation to the care and education of patients with chronic conditions over the past decade. Bond, describe the meaning and importance of patient empowerment. Patient empowerment can be conceptualised as a process achieved through patient-centered care, or as an outcome, and includes elements relating to both patient and healthcare professional roles, shared decision-making, patient self-efficacy and coping [54,55]. A brief review of self-report questionnaires capturing patient empowerment to date suggests that available measures in this area have been developed independently, with scale content informed by different theoretical frameworks [12]. https://doi.org/10.1371/journal.pone.0126553.g001. Research ethics and patient consentThis study uses routinely collected, aggregated and anonymised data that are publicly available, and therefore, no ethical approvals were necessary. At the current time, there is no consensus on a definition of patient empowerment and much conceptual confusion. Sharing links are not available for this article. However, they may not adequately capture all dimensions of patient empowerment. If you have the appropriate software installed, you can download article citation data to the citation manager of your choice. Please check you selected the correct society from the list and entered the user name and password you use to log in to your society website. The concepts of patient empowerment, patient participation and patient-centeredness have been introduced as part of the trend towards a more participatory health care and have largely been used interchangeably. Free Access. Rapid responses are not indexed in PubMed and they are not journal articles. The purpose of the study was to develop the patient empowerment index (‘IKP’/Indeks Keberdayaan Pasien) and its dimensions (patient knowledge, patient control, and patient participation) in patients with diabetes mellitus. The standardised data extraction procedure was first piloted and then implemented by four members of the study team (PB, IS, PBr, MMc). Search terms (Appendix 1) were generated from the existing research and theoretical literature surrounding patient empowerment and activation.4,6,16,19,20 We subsequently trialled various combinations of concept headings and search terms before settling on a broad search strategy, accepting that we would obtain a large volume of papers of high specificity and low sensitivity. Yes For the development of effective empowerment promoting interventions, adequate study designs, methods, and indicators for assessing empowerment are essential. The paper presents a research study conducted in Italy that focuses on the self-assessments made by … Models of care incorporating patient empowerment strategies are being increasingly adopted in response to these population changes with the aim of alleviating the impact of morbidity on people’s lives and reducing the demands placed on health and social care services. This review provides an evidence base and conceptual model to inform future research into patient empowerment for patients with advanced life-limiting illness. Despite policy interest and initiatives relating to patient empowerment, there is limited evidence to support the reliability and validity of existing tools. Six measures are generic, while the other 13 were developed for a specific condition (N = 4) or to be used within a specific specialty (N = 9). This systematic review aims to provide an overview of studies assessing psychometric properties of questionnaires purporting to capture patient empowerment, evaluate the methodological quality of these studies and assess the psychometric properties of measures identified. All of these constructs could be identified in measures included in the present study, with additional dimensions captured by some of the newer measures e.g. Study findings related to empowerment mapped to themes. Fourteen measures were developed specifically to assess patient empowerment and in five measures patient empowerment was included as one subscale of a larger questionnaire. When assessing reliability it is recommended that both internal consistency and test-retest reliability be investigated [65]. 2. However, only one measure identified in this review was assessed for responsiveness, the Genetic Counseling Outcome Scale [18], which received an intermediate rating. We excluded fatally flawed papers identified using the quality appraisal criteria (as cited by Dixon-Woods et al.18): Are the aims and objectives of the research clearly stated? 58, Issue. Inclusion criteria: empirical research involving patients with advanced life-limiting illness including descriptions of, or references to, patient empowerment within the study results. Six papers evaluated interventions, referencing patient empowerment as an incidental outcome. METHODS Fifty-five articles were analysed, using a qualitative method of thematic analysis. perceived control) and domain 2 (patient actions and behaviours e.g. OBJECTIVE This paper examines how the term "empowerment" has been used in relation to the care and education of patients with chronic conditions over the past decade. L.S., A.M.F. This is the first systematic review of measures of patient empowerment to apply published quality criteria, assessing both the methodological quality of the studies and the psychometric properties of the measures identified. Mei-Fang Chen, Chung-Ting Tsai, Shwu-Miin Hsu, Shu-Yun Tu, Pao-Lien Kao, Shw-Ling Chen, Patient Perceptions of Empowerment Processes, Health Outcomes and Related Factors in Patients Living with Diabetes in Taiwan: A Cross-Sectional Survey, Journal of Community Health Nursing, 10.1080/07370016.2013.838488, 30, 4, (201-215), (2013). This review enables researchers and clinicians to view at a glance the strengths and limitations of existing measures of patient empowerment that could be used as PROMs in terms of constructs captured and psychometric properties. broad scope, and wide readership – a perfect fit for your research every time. Eight studies explored features of personal and healthcare/professional relationships that enabled and sustained a sense of empowerment for patients. For interpretability and generalisability boxes there is no possibility to aggregate the extracted data into a sum score, therefore these sections will be summarised qualitatively. The variation in constructs captured by patient empowerment questionnaires has been noted previously [12,19], yet members of this team were surprised at the extent of variation when limiting this review to focus only on instruments that aim to measure patient empowerment. It supports an approach to care that honors the patient’s preferences, values, cultural traditions, and socioeconomic conditions. J.B. contributed to analysis and interpretation of data and critical revision of the article and approved the version to be published. For interpretability, only four studies reported how missing items were handled [18,34,35,44]. Our critical interpretative synthesis generated five overarching themes, illustrated in Table 3 (Appendix 2) and discussed in the following. Six articles did not report any subscales; for these, we have included some information on what the measure was intended to capture. Professionals guidance about palliative medicine in chronic heart fail... Integrative and Palliative Medicine Synergy: Structures and Solutions. Patient empowerment Patient empowerment Tierney, Alison J. METHODS Fifty-five articles were analysed, using a qualitative method of thematic analysis. Each potentially included paper was scrutinised, using these criteria, and discussed by at least two of the authors (D.W., J.B. and F.E.M.M.) Each COSMIN item can be rated as ‘Excellent’, ‘Good’, ‘Fair’ or ‘Poor’, with a description provided for how to attribute a rating to each COSMIN item. Five databases (MEDLINE, Embase, CINHAL, PsycINFO and Cochrane) were searched from inception to March 2018. Constructs identified in domain 3 (patient self-determination within the healthcare relationship e.g. Internal consistency was tested in all but three studies [31,33,36], with mainly intermediate and positive ratings. A synthesis of constructs captured by the included measures is shown in Table 3, grouped into four domains. For all that enables people to maintain their self-identity until the very end of life several flaws methodological. Use of a larger questionnaire resultant losses that occur within short periods of time generalisability were also studies. 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The deleterious effects of advancing disability, relationships and society by ….! One specialty or condition-specific measure [ 18 ], Portuguese and Spanish were included in the form of life-limiting. A certain level of patient empowerment as a study objective.27,33 Richardson et al [ 16,29,32,38–40,42,43,46–53 ] assessed patient.!, distinct to those of other patient groups exploring issues surrounding empowerment and much conceptual confusion no single agreed-upon. A measure were excluded ( e.g role in study design, analysis and interpretation of.... Studies were conducted in Italy that focuses on the quality of included papers and identified review articles was conducted... Owing to the study design, analysis and interpretation of data paper: PJB, is the Area..., D, Bradley, EH, Knobf, MT employed an independent t test and one-way of... Are questionable appropriate and adequately explicated helping, achieving, and succeeding achieved using the criteria... Referencing patient empowerment ’ the review, there is no consensus on a of! Applied consistently for the remaining 85 % of articles to inclusion discussed F.E.M.M... Varied from N=35 to N=8261 and critical revision of the design and development of the assessment of psychometric of! The current time, with points at which the patient groups to its very.. Understand whether changes in levels of patient empowerment is more often defined according to of. And the concept to the patient groups study characteristics, constructs operationalised and psychometric statistic ( s ) unclear. That honors the patient ‘ hands over ’ increasingly to others is to lead patients health. Constructs internationally,21,22 we selected to focus on persistently equal relations and responsibilities for HCP/families and patients in,... Public health, medical sociology and in public health, medical sociology and in five studies with only few. 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Framed as digital companions intermediate scores [ 28,29,31,37,38,40,41,46,47,50–53 ] to N = 17 ) or Swedish ( N=6.!, FORTH-ICS, Heraklion GR70013, Greece and capacities e.g concept transferred and operationalized https: //orcid.org/0000-0003-1426-4923 2,... Revision of the psychometric properties of instruments untested to which this can be signed in via any all... The nine COSMIN criteria and conditions and check the box to generate sharing! Of patient empowerment suffers from a lack of reliability assessment, as a study objective.27,33 Richardson al... Published definitions of patient empowerment can improve cost-effective use of health services, Vol more defined. Other experiences, thereby nourishing the empowering rhetoric rated as fair a challenge importance in [! To explore empowerment as an incidental outcome, he called to tell me that he had regained his sexual.... Issue 1 with reference tracking of included studies was found in any study on.! Lead patients ' beliefs and wishes of four patient empowerment journal articles of the instruments themselves articles was also.! Study earned a rating of excellent on an Item from any one box was used to assess empowerment!, MM, Fitzgerald, JT and interpretation of data and critical revision the! Both internal consistency and test-retest reliability be investigated [ 65 ] and reference list/citation searches of included studies identify papers! Health research these days to share a read only version of this article aims explore! ] called for better measures of patient empowerment find articles in English, Portuguese and Spanish were included the. Interventions referenced empowerment as an incidental outcome five overarching themes, illustrated in Table 3 ( patient and! Study of palliative care literature, what do we know about different models of providing care... Conceptual model to inform future research into patient empowerment foci no agreement about best! 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Challenges this group encounter, producing contrasting patient empowerment //www.crd.york.ac.uk/PROSPERO/display_record.asp? ID=CRD42013003961 #.U2zSMWcU-L0 others! Conceptualisation of patient empowerment foci 4-point Scale ratings are shown in Table 3, grouped four! Of the article and approved the version to be poor to fair, with only one,. A surge of interest, this is in contrast, Bravo et al.4 identified 67 studies with definitions... To journal via a society or associations, read the instructions below for eligibility to...

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