Transcultural adaptation and validation of the patient empowerment in long-term conditions questionnaire

Abstract

BackgroundPatient empowerment is a key element to improve the results in health, increase satisfaction amongst users and obtain higher treatment compliance. The main objective of this study is to validate the Spanish version of the questionnaire “Patient empowerment in long-term conditions” which evaluates the patients’ level of empowerment of chronic diseases. The secondary objective is to identify factors which predict basal empowerment and changes (improvement or deterioration) in patients with Heart Failure (HF).MethodsAn observational and prospective design of psychometric type to validate a questionnaire (aim 1) and a prospective study of cohorts (aim 2). The study will include 121 patients with confirmed diagnosis of HF. Three measurements (basal, at 15 days and at 3 months) will be carried out: quality of life, self-care and empowerment. Descriptive and inferential analyses will be used. For the first aim of the study (validation), the test-retest reproducibility will be assessed through intraclass correlation coefficient; internal consistency will be assessed through Cronbach’s alpha coefficient; construct validity through Pearson’s correlation coefficient; and sensibility to change through effect size coefficient.DiscussionSet a valid questionnaire to measure the level of empowerment of patients with chronic diseases could be an effective tool to assess the results from the provision of the health care services. It will also allow us to identify at an early stage, those groups of patients with a low level of empowerment. Hence, they could become a risk group due to poor management of the disease, with a high rate of decompensation and a higher use rate of the health system resources.

The genome empowerment scale: An assessment of parental empowerment in families with undiagnosed disease

“…21,22 The process of empowerment involves taking steps to acquire new knowledge and skills, to be able to utilize resources, and to gain support through the involvement with similar others. 21,23 It is critically important to understand the empowerment process as each step offers an opportunity for an intervention to improve the outcome. Empowerment as an outcome is important to consider in diagnostic genomic sequencing as empowerment outcomes include having the knowledge, skills, and resilient self-beliefs required to cope, adjust, and have control over life challenges.…”

“…Key steps leading to empowerment are acquiring new knowledge, confidence in oneself to manage emotionally the life or health challenges that are being presented, and connecting to and learning from similar others. 21,23,37 Parents of children with chronic or rare disorders report not having the tools needed to be successful in formulating next steps, face challenges in coordinating complex medical care with multiple providers, limited opportunities to connect to and learn from other parents, as well as little information on the long-term consequences or medical management of the child's condition. 6,38,40 With less than half of children undergoing genomic sequencing obtaining a diagnosis and with these diagnoses likely to be rare, ultra-rare, or unique disorders 41 for which little is known, high parental expectations and importance placed on a diagnosis are unlikely to be met.…”

“…We chose empowerment as the framework for the GEmS because it is a dynamic construct that is both a process and an outcome. It is applicable to many settings, including healthcare, and is a key element in healthcare autonomy and decision making . The process of empowerment involves taking steps to acquire new knowledge and skills, to be able to utilize resources, and to gain support through the involvement with similar others .…”

“…It is applicable to many settings, including healthcare, and is a key element in healthcare autonomy and decision making . The process of empowerment involves taking steps to acquire new knowledge and skills, to be able to utilize resources, and to gain support through the involvement with similar others . It is critically important to understand the empowerment process as each step offers an opportunity for an intervention to improve the outcome.…”

Patient empowerment in Europe: is no further research needed?

“…According to the World Health Organization (WHO), PE is 'a process through which people gain greater control over decisions and actions affecting their health' [14]. Similarly, the European Network on Patient Empowerment (ENOPE)-a non-profit association established in 2012 to bring together organizations that implement PE programs across Europe-defines PE as 'a process to help people gain control, which includes people taking the initiative, solving problems, and making decisions' [15].…”