Background: Restless legs syndrome (RLS) is a prevalent neurological condition affecting daily life. Symptoms can vary and worsen during the evening and night, with sleep problems as a common consequence. Few, if any, qualitative studies have explored how patients with RLS experience their sleep problems.

Aim: The aim was to explore and describe how patients with RLS experience their sleep problems, the subsequent daytime consequences, and self-care activities used to improve sleep.

Methods: An inductive, descriptive, qualitative design was used, including semi-structured interviews with 28 strategically selected patients from a national RLS organisation. Data were analysed with manifest qualitative content analysis and reported according to the COREQ checklist.

Results: RLS-related ailments affecting sleep were: noticing initial symptoms in the evening, enduring stressful RLS symptoms at night, and being concerned about not having symptom-relieving treatment. Struggles with daytime consequences of poor sleep were: feeling excessive fatigue and managing social interactions. Self-care actions to improve sleep included trust in daily routines, benefiting from the use of various distractions, and actively seeking effective medical treatment.

Conclusions and contribution to nursing: Knowledge about various RLS-related ailments affecting sleep can be used by nurses to provide adequate education about the disease and potential nursing interventions to improve sleep.

Restless Legs Syndrome (RLS) affects 3% of the world's population, causing tingling sensations primarily in the legs. Incorporating self-care activities could improve the management of RLS symptoms, yet knowledge about effective self-care actions is limited. This study employs the Capability, Opportunity, and Motivation-Behaviour (COM-B) model to explore self-care behaviours in individuals with RLS, as research in this area is sparse. Qualitative content analysis of interviews with 28 participants with RLS, 26 subcategories emerged, aligning with the COM-B model's components. The first part, Capability, highlighted the importance of being able to be in motion, while the second, Opportunity referred to situations where there was a lack of trust and guidance for self-care. The third part, Motivation, emphasised the importance of fixed routines of sleep, rest, and activity. These identified prerequisites can inform the development of screening instruments and patient-reported outcome measures to evaluate self-care needs and interventions for individuals with RLS.

BACKGROUND: An increased use of the internet and digital health care for patients with long-term conditions implies a need for assuring digital health literacy skills. Patients with restless legs syndrome (RLS) represent a group where digital sources of information are highly valued. This is due to a difficult diagnosis and complex treatment situation that contributes to patients seeking out digital resources themselves to handle the perceived shortcomings in their care. To benefit from these resources, patients need to have the digital skills to explore information to optimize their understanding of the disease and its treatments. The eHealth Literacy Scale (eHEALS), which has been used in both general populations and patients with long-term conditions, could, if proven valid, be used by researchers and clinicians to assess digital health literacy among patients with RLS to inform the development of patient-centered digital health care information and interventions.

OBJECTIVE: The aim of the study is to investigate the psychometric properties of eHEALS in patients with RLS to determine its adequacy and potential utility.

METHODS: A cross-sectional design including patients with RLS from the Swedish national RLS patient organization was used. Data were collected via a mail-based survey comprising back-and-forth translated Swedish versions of the following instruments: eHEALS, Restless Legs Syndrome-6 Scale (RLS symptoms), Pittsburgh Sleep Quality Inventory (sleep quality), Epworth Sleepiness Scale (daytime sleepiness), Patient Health Questionnaire-9 (depressive symptoms), and CollaboRATE (shared decision-making). Confirmatory factor analysis and Rasch models were used to assess the validity and reliability of the eHEALS. Measurement invariance, unidimensionality, and differential item functioning across age, gender, medication use, sleep quality, level of depressive symptoms, and participation in care decisions were assessed.

RESULTS: A total of 788 patients with a mean age of 70.8 (SD 11.3) years participated. Among them, 64.7% (n=510) were women, 73.8% (n=582) were married or living together, and 43.5% (n=343) had attained a university education. A median eHEALS score of 28 (IQR 22-33) was reported. The unidimensionality of the eHEALS was supported by the confirmatory factor analysis and the Rasch model. The reliability of the eHEALS was confirmed using composite reliability and Cronbach α. No differential item functioning was identified for age, gender, medication use, shared decision-making condition, depressive symptoms, or sleep quality, meaning that these groups do not have different probabilities of endorsing a given item after controlling for the overall score.

CONCLUSIONS: The eHEALS showed good validity and reliability and operated equivalently for men and women of different ages with various clinical and treatment conditions related to RLS. Accordingly, health care professionals can use eHEALS as a psychometrically sound tool to explore the digital health literacy level among patients with RLS.

PURPOSE: Restless Legs Syndrome (RLS) is a widespread condition that affects sleep leading to daytime sleepiness, depression, and reduced quality of life. This study aims to determine and describe how patients with RLS experience their everyday life, with a focus on facilitators and barriers related to Maslow's hierarchical theory of human needs.

METHOD: Semi-structured interviews were analysed with qualitative content analysis resulting in facilitators and barriers affecting the fulfilment of the five human needs.

RESULTS: Addressing RLS symptoms through medications and a quiet sleep environment fulfils psychological needs. Control over RLS symptoms, engagement in activities, trust in treatments, and social support meet safety and security needs. Social inclusion, close relationships, and meaningful interactions fulfil a sense of belongingness and love needs despite RLS. Competence in managing RLS, effective self-care strategies, confident communication, and trust-building support esteem needs. Finally, comprehensive understanding through person-centred interventions and coping fulfils the self-actualization needs in managing RLS.

CONCLUSION: Holistic and person-centred interventions, including facilitators for the fulfilment of physiological, psychological, and social needs could help healthcare professionals to provide holistic care.

Purpose

The aim of this study was to validate the Ethos Brief Index (EBI) in patients with Restless Legs Syndrome (RLS).

Methods

A cross-sectional design, including 788 subjects with RLS (65% women, 70.8 years, SD 11.3) from the Swedish RLS Association, was used. A postal survey was sent out to collect data regarding socio demographics, comorbidities, and RLS-related treatment data. Questionnaires included were EBI, the Restless Legs Syndrome-6 Scale (RLS-6), Restless Legs Syndrome-Quality of Life questionnaire (RLSQoL), the Insomnia Severity Index (ISI), and the Epworth Sleepiness Scale (ESS). The validity and reliability of the EBI were investigated using Rasch and confirmatory factor analysis (CFA) models. Measurement invariance, unidimensionality, and differential item functioning (DIF) across age and gender groups, as well as insomnia, daytime sleepiness, RLS-related QoL and RLS severity were assessed.

Results

The results supported the unidimensionality of the EBI in the CFA (i.e., explaining 61.5% of the variance) and the Rasch model. The reliability of the EBI was confirmed using composite reliability and Cronbach's alpha. No DIF was identified for gender, age, insomnia, daytime sleepiness, RLS severity or RLS-related QoL.

Conclusion

The EBI showed good validity and reliability and operated equivalently for male and female patients with RLS. Accordingly, healthcare professionals can use the EBI as a psychometrically sound tool to explore and identify patient-centered problems related to the whole life situation.

Adherence to continuous positive airway pressure treatment for obstructive sleep apnea tends to be poor. Communication influences adherence but has not previously been investigated from a practitioner perspective, although shared decision-making is known to be of great importance. The aim was to describe how practitioners experience communication with patients with obstructive sleep apnea during the initial visit at a continuous positive airway pressure treatment clinic, with focus on facilitators and barriers related to the 4 Habits Model, a communication model comprised of four types of interrelated skills to make encounters more patient-centred: investing in the beginning; exploring the patient perspective; showing empathy; and investing in the end. A descriptive design with qualitative content analysis was used. A deductive analysis was carried out based on interviews with 24 strategically selected practitioners from seven continuous positive airway pressure treatment clinics. The 4 Habits Model was used as a framework for identifying facilitators and barriers to communication. Investments in the beginning was described as creating contact, showing the agenda and being adaptive, while explore the patient perspective included showing awareness, being explorative and creating a participating climate. Show empathy consisted of showing openness, being confirmative and creating acceptance, while showing a structured follow-up plan, being open minded and invitational and creating motivation to build on were descriptions of invest in the end. Awareness of potential facilitators and barriers for patient-centred communication during the beginning, middle and end of a continuous positive airway pressure treatment consultation can be used to improve contextual conditions and personal communication competences among practitioners working with continuous positive airway pressure treatment initiation.

Objectives: The impact of dental occlusion on the experiences of head and neck cancer patients and their oral, social and psychological functioning has been sparsely investigated. There is a lack of knowledge regarding the experience of tooth loss and dentures among patients treated for head and neck cancer. The aim of this study was to describe the experiences of head and neck cancer patients of prophylactic tooth extractions and temporary removable dentures, 6 months after radiotherapy treatment.

Material and methods: An individual interview with 25 patients 6 months after radiotherapy was subjected to a qualitative content analysis.

Results: Two categories, Impaired oral function and Belief in the future, and seven subcategories described the patients' experiences of temporary removable dentures during the first 6 months after prophylactic tooth extractions. The temporary removable dentures affected the patients' ability to chew, swallow and speak, caused pain, and were experienced as an enemy. Despite that, the patients were hopeful and had a wish for recovery, which gave them the energy to live.

Conclusion: Prophylactic tooth extractions and temporary removable dentures 6 months after radiotherapy treatment affect head and neck cancer patients' recovery and everyday life. However, they have the will to take on these challenges, pertaining not only to themselves, but also to relatives and health professionals. At the individual level, the patient needs individualized professional support to get through the arduous procedure, from the acute situation until the end of the rehabilitation phase.

BACKGROUND: Over the past decade, the importance of person-centered care has led to increased interest in patient-reported outcome measures (PROMs). In cardiovascular care, selecting an appropriate PROM for clinical use or research is challenging because multimorbidity is often common in patients. The aim was therefore to provide an overview of heart-disease specific PROMs and to compare the content of those outcomes using a bio-psycho-social framework of health.

METHODS: A scoping review of heart disease-specific PROMs, including arrhythmia/atrial fibrillation, congenital heart disease, heart failure, ischemic heart disease, and valve diseases was conducted in PubMed (January 2018). All items contained in the disease-specific PROMs were mapped to WHO's International Classification of Functioning, Disability and Health (ICF) according to standardized linking rules.

RESULTS: A total of 34 PROMs (heart diseases in general n = 5; cardiac arrhythmia n = 6; heart failure n = 14; ischemic heart disease n = 9) and 147 ICF categories were identified. ICF categories covered Body functions (n = 61), Activities & Participation (n = 69), and Environmental factors (n = 17). Most items were about experienced problems of Body functions and less often about patients' daily activities, and most PROMs were specifically developed for heart failure and no PROM were identified for valve disease or congenital heart disease.

CONCLUSIONS: Our results motivate and provide information to develop comprehensive PROMs that consider activity and participation by patients with various types of heart disease.