The ethos brief index-validation of a brief questionnaire to evaluate wellness based on a holistic perspective in patients with restless legs syndrome.

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.

The effect of psychosocial interventions for sexual health in patients with pelvic cancer: a systematic review and meta-analysis.

AIM: The aim of this systematic review and meta-analysis was to explore and evaluate the effect of psychosocial interventions in improving sexual health outcomes among post-treatment patients with pelvic cancer. METHODS: Inclusion and exclusion criteria were pelvic cancer survivors; psychosocial interventions; studies with a control group and measures of sexual health. Five databases were searched for literature along with an inspection of the included studies' reference lists to extend the search. Risk of bias was assessed with the RoB2 tool. Standardised mean difference (SMD) with a random effects model was used to determine the effect size of psychosocial interventions for sexual health in patients with pelvic cancers. RESULTS: Thirteen studies were included, with a total number of 1,541 participants. There was a large heterogeneity regarding the type of psychosocial intervention used with the source found in a leave one out analysis. Six studies showed statistically significant improvements in sexual health, while three showed positive but non-significant effects. The summary effect size estimate was small SMD = 0.24 (95% confidence interval [CI]: 0.05 to 0.42, p = 0.01). DISCUSSION: There is limited research on psychosocial interventions for sexual health in pelvic cancer patients. There are also limitations in the different pelvic cancer diagnoses examined. Commonly, the included articles examined physical function rather than the whole sexual health spectrum. The small effect sizes may in part be due to evaluation of psychosocial interventions by measuring physical dysfunction. Future research should broaden sexual health assessment tools and expand investigations to more cancer types.

How patients with insomnia interpret and respond to the consensus sleep diary: a cognitive interview study.

OBJECTIVE/BACKGROUND: The Consensus Sleep Diary (CSD) is widely used to assess subjective sleep. Psychometric evaluations and focus-groups support its validity and clinical usefulness, but further research into its validity is needed. The aim of the study was to evaluate a Swedish translation of the CSD regarding test content and response processes in patients with insomnia. PATIENTS/METHODS: In connection with translating the CSD into Swedish, we used cognitive interviewing to evaluate test content and the response process, that is, how people make decisions when responding to survey items. Cognitive interviews were conducted with 13 primary health care patients with insomnia disorder (mean age, 49 years; SD 15.5). Iterative, reparative analysis was used to investigate test content. Descriptive deductive analysis was used to investigate interview transcripts for the themes of the cognitive model: comprehension, retrieval, decision process, and judgement. Together, the themes explain the response process when responding to a patient-reported outcome measure. RESULTS: The overall comprehension of the CSD could be affected by poor adherence to the instructions (comprehension). Patients had difficulty with recall if they did not complete the diary immediately in the morning and just before bedtime (retrieval). They could have problems deciding how to respond to certain items because they imbued sleep-related concepts with extra meaning (decision process), and had trouble finding response alternatives nuanced enough to describe their experience of sleep and tiredness (judgement). CONCLUSIONS: This study contributes knowledge on how the instrument is perceived and used by care-seeking patients with insomnia. In this context, the CSD exhibits known flaws such as memory lapses if the diary is not filled in directly in the morning. To increase the accuracy of patients' responses, therapists should support patients in reading the instructions.

The meaning of continuity of care from the perspective of older people with complex care needs-A scoping review.

People aged 65 years or older with complex care needs are at risk of fragmented care. This may jeopardise patient safety. Complex care needs are defined as care needs that require the performance of time-consuming processes such as reviewing medical history, providing counselling, and prescribing medications. A scoping review was conducted with the aim of mapping the literature regarding continuity of care from the perspective of older people with complex care needs. Search results from seven databases (PubMed, Cinahl, PsycInfo, ASSIA, Web of Science, Google Scholar, Scopus, DOAJ), grey literature (BASE), and a hand-search search of key journals were used. A deductive analysis based on aspects of continuity of care was performed. The search resulted in 5704 records. After a title and abstract screening, 93 records remained. In total, 18 articles met the inclusion criteria and were included in the scoping review. Older people´s sense of continuity of care increases when fewer healthcare workers are involved in their care but help from skilled professionals is more important than meeting the same person. It is vital for older people's feeling of continuity of care that discharge planning involves them, their families, and care providers in an organised way.

Validation of two brief instruments (the SURE and CollaboRATE) to measure shared decision-making in patients with restless legs syndrome.

Restless legs syndrome (RLS) is a common neurological disorder characterised by an urge to move arms and legs, usually associated with discomfort, pain, motor restlessness, and sleep disturbance. An individually adapted treatment is needed but difficult to optimise, which makes shared decision-making (SDM) important. However, brief validated instruments on how patients with RLS perceive their involvement in treatment decisions are lacking. Therefore, the aim was to validate two instruments, SURE (Sure of myself, Understand information, Risk-benefit ratio, Encouragement, i.e., to assess decisional conflict) and CollaboRATE (brief patient survey focused on SDM, i.e., to assess SDM), in patients with RLS. A cross-sectional design, including 788 participants with RLS (65% females, mean [SD] age 70.8 [11.4] years) from a national patient organisation for RLS, was used. A postal survey was sent out to collect data regarding weight, height, comorbidities, demographics, and RLS-related treatment data. The following instruments were included: the SURE, CollaboRATE, Restless Legs Syndrome-6 Scale, and eHealth Literacy Scale. Confirmatory factor analysis and Rasch models were used to assess the validity and reliability of the SURE and CollaboRATE. Measurement invariance, unidimensionality, and differential item functioning (DIF) across age, gender, and medication groups were assessed. The SURE and CollaboRATE were both identified as unidimensional instruments with satisfactory internal consistency. No DIF across age and gender was identified, while significant DIF was observed for both the SURE and CollaboRATE regarding medication use categories. However, both the SURE and CollaboRATE are potential instruments to be used in research, but also as reflection tools by healthcare professionals, patients, and students to explore and assess SDM, and support its development in clinical care.

Effects of Web-Based and Mobile Self-Care Support in Addition to Standard Care in Patients After Radical Prostatectomy: Randomized Controlled Trial.

BACKGROUND: Prostate cancer is a common form of cancer that is often treated with radical prostatectomy, which can leave patients with urinary incontinence and sexual dysfunction. Self-care (pelvic floor muscle exercises and physical activity) is recommended to reduce the side effects. As more and more men are living in the aftermath of treatment, effective rehabilitation support is warranted. Digital self-care support has the potential to improve patient outcomes, but it has rarely been evaluated longitudinally in randomized controlled trials. Therefore, we developed and evaluated the effects of digital self-care support (electronic Patient Activation in Treatment at Home [ePATH]) on prostate-specific symptoms. OBJECTIVE: This study aimed to investigate the effects of web-based and mobile self-care support on urinary continence, sexual function, and self-care, compared with standard care, at 1, 3, 6, and 12 months after radical prostatectomy. METHODS: A multicenter randomized controlled trial with 2 study arms was conducted, with the longitudinal effects of additional digital self-care support (ePATH) compared with those of standard care alone. ePATH was designed based on the self-determination theory to strengthen patients' activation in self-care through nurse-assisted individualized modules. Men planned for radical prostatectomy at 3 county hospitals in southern Sweden were included offline and randomly assigned to the intervention or control group. The effects of ePATH were evaluated for 1 year after surgery using self-assessed questionnaires. Linear mixed models and ordinal regression analyses were performed. RESULTS: This study included 170 men (85 in each group) from January 2018 to December 2019. The participants in the intervention and control groups did not differ in their demographic characteristics. In the intervention group, 64% (53/83) of the participants used ePATH, but the use declined over time. The linear mixed model showed no substantial differences between the groups in urinary continence (ß=-5.60; P=.09; 95% CI -12.15 to -0.96) or sexual function (ß=-.12; P=.97; 95% CI -7.05 to -6.81). Participants in the intervention and control groups did not differ in physical activity (odds ratio 1.16, 95% CI 0.71-1.89; P=.57) or pelvic floor muscle exercises (odds ratio 1.51, 95% CI 0.86-2.66; P=.15). CONCLUSIONS: ePATH did not affect postoperative side effects or self-care but reflected how this support may work in typical clinical conditions. To complement standard rehabilitation, digital self-care support must be adapted to the context and individual preferences for use and effect. TRIAL REGISTRATION: ISRCTN Registry ISRCTN18055968; https://www.isrctn.com/ISRCTN18055968. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/11625.

Is insomnia associated with self-reported health and life satisfaction in cardiac arrest survivors? A cross-sectional survey.

Background: Insomnia symptoms seem to be common in cardiac arrest survivors but their associations with important outcomes such as self-reported health and life satisfaction have not previously been reported during the early post-event period. Therefore, the aim of the study was to investigate whether symptoms of insomnia are associated with self-reported health and life satisfaction in cardiac arrest survivors six months after the event. Methods: This multicentre cross-sectional survey included cardiac arrest survivors ≥18 years. Participants were recruited six months after the event from five hospitals in southern Sweden, and completed a questionnaire including the Minimal Insomnia Symptom Scale, EQ-5D-5L, Health Index, Hospital Anxiety and Depression Scale, and Satisfaction With Life Scale. Data were analysed using the Mann-Whitney U test, linear regression, and ordinal logistic regression. The regression analyses were adjusted for demographic and medical factors. Results: In total, 212 survivors, 76.4% males, with a mean age of 66.6 years (SD = 11.9) were included, and of those, 20% reported clinical insomnia. Insomnia was significantly associated with all aspects of self-reported health (p < 0.01) and life satisfaction (p < 0.001), except mobility (p = 0.093), self-care (p = 0.676), and usual activities (p = 0.073). Conclusion: Insomnia plays a potentially important role for both health and life satisfaction in cardiac arrest survivors. Screening for sleep problems should be part of post cardiac arrest care and follow-up to identify those in need of further medical examination and treatment.

Patient safety and sense of security when telemonitoring chronic conditions at home: the views of patients and healthcare professionals - a qualitative study.

BACKGROUND: Chronic diseases are increasing worldwide, and the complexity of disease management is putting new demands on safe healthcare. Telemonitoring technology has the potential to improve self-care management with the support of healthcare professionals for people with chronic diseases living at home. Patient safety threats related to telemonitoring and how they may affect patients' and healthcare professionals' sense of security need attention. This study aimed to explore patients' and healthcare professionals' experiences of safety and sense of security when using telemonitoring of chronic conditions at home. METHODS: Semi-structured interviews were conducted with twenty patients and nine healthcare professionals (nurses and physicians), recruited from four primary healthcare centers and one medical department in a region in southern Sweden using telemonitoring service for chronic conditions in home healthcare. RESULTS: The main theme was that experiences of safety and a sense of security were intertwined and relied on patients´ and healthcare professionals´ mutual engagement in telemonitoring and managing symptoms together. Telemonitoring was perceived to increase symptom awareness and promote early detection of deterioration promoting patient safety. A sense of security emerged through having someone keeping track of symptoms and comprised aspects of availability, shared responsibility, technical confidence, and empowering patients in self-management. The meeting with technology changed healthcare professionals' work processes, and patients' daily routines, creating patient safety risks if combined with low health- and digital literacy and a naïve reliance on technology. Empowering patients' self-management ability and improving shared understanding of the patient's health status and symptom management were prerequisites for safe care and the patient´s sense of security. CONCLUSIONS: Telemonitoring chronic conditions in the homecare context can promote a sense of security when care is co-created in a mutual understanding and responsibility. Attentiveness to the patient's health literacy, symptom management, and health-related safety behavior when using eHealth technology may enlighten and mitigate latent patient safety risks. A systems approach indicates that patient safety risks related to telemonitoring are not only associated with the patient's and healthcare professionals functioning and behavior or the human-technology interaction. Mitigating patient safety risks are likely also dependent on the complex management of home health and social care service.

Following a standardised pathway: Healthcare professionals' perspectives on person-centred care within ERAS for patients with colorectal cancer.

AIMS AND OBJECTIVES: To describe healthcare professionals' perceptions of person-centred care for patients with colorectal cancer, within the standardised care concept of Enhanced Recovery After Surgery. BACKGROUND: International guidelines for colorectal surgery describe standardised perioperative care. Combining standardised care with person-centred care could be accomplished using the person-centred nursing framework for establishing and maintaining relationships with patients. Despite strong evidence for the standardised care concepts' medical benefits, studies concerning the practice of person-centred care from a nursing point of view are sparse. DESIGN: A qualitative descriptive design was used. METHODS: Four focus groups interviews were performed including 22 healthcare professionals with 1-29 years' experience of caring for patients with colorectal cancer. Data were analysed using qualitative conventional content analysis. The COREQ checklist for reporting qualitative research was used. RESULTS: Three themes emerged in the analysis; Framework in the healthcare system, Facing differences in participation and Interacting with the person beyond the illness. Conditions for person-centred care were related to the interactions between patients and healthcare professionals, the structure of care were also considered relevant. CONCLUSION: There is a discrepancy between what is considered important to do and what is done in clinical practice to create conditions for patient participation. Interacting with patients and creating an interprofessional environment are important conditions, the structure of care is also a fundamental key to promoting person-centred care. There is a need for further improvement in care of patients with colorectal cancer to achieve person-centredness within standardised care. RELEVANCE TO CLINICAL PRACTICE: The findings provide valuable insights into what healthcare professionals consider to be important for achieving person-centred care. This knowledge can be useful in clinical practice and education programs. PATIENT OR PUBLIC CONTRIBUTION: At the outset of the study, three patients were interviewed aimed at improving the conditions for the healthcare professionals' focus groups.

Sleep in cardiac arrest survivors.

BACKGROUND: Insomnia, sleep apnoea and sleep loss are risk factors for the development of cardiovascular diseases. Most research on sleep disturbances includes patients with heart failure, while the role of sleep in sudden cardiac arrest survivors (SCA) has been only partially investigated and understood. Sleep-related breathing disorders and obstructive sleep apnoea increase illness and mortality in the aftermath of SCA. Also, post-traumatic stress is evident in SCA survivors, where sleep disruptions are some of the main symptoms of the condition. Consequently, it is important to identify sleep problems in SCA survivors at an early stage to avoid unnecessary suffering. AIM: The aim of this study was to investigate registered nurses' perceptions of SCA survivors' sleep, both in hospital and after discharge. STUDY DESIGN: This was an explorative interview study with a phenomenographic approach. Nineteen registered nurses (RNs) varying in age, sex and years in the profession participated. FINDINGS: The nurses' perceptions of SCA survivors' sleep were categorized as: "The observer - noticing behaviours, emotions and habits of the patient that affect sleep", "The oblivious witness - attitudes that hinder the ability to recognise sleep behaviours", and "The practitioner - advising and medicating for sleep". The outcome space showed that the nurses detected both obvious and subtle signs relating to patients' sleep. However, attitudes hindering the recognition of sleep behaviours were independent of acting as an observer or practitioner. If nothing unforeseen was observed, or if the patient did not spontaneously raise the subject, sleep was considered less important than other health problems in SCA survivors. CONCLUSIONS: Although the nurses knew that SCA survivors suffered from poor sleep, they failed to reflect on the consequences for the patient. Nurses' feelings of insufficient knowledge about sleep, as well as their omittance of sleep in the follow-up documentation could leave sleep issues unaddressed and cause unnecessary patient suffering. RELEVANCE TO CLINICAL PRACTICE: Nurses need increased knowledge and training to enable them to detect subtle signs of sleep problems in SCA survivors.

Transformation of Rasch model logits for enhanced interpretability.

BACKGROUND: The Rasch model allows for linear measurement based on ordinal item responses from rating scales commonly used to assess health outcomes. Such linear measures may be inconvenient since they are expressed as log-odds units (logits) that differ from scores that users may be familiar with. It can therefore be desirable to transform logits into more user-friendly ranges that preserve their linear properties. In addition to user-defined ranges, three general transformations have been described in the literature: the least measurable difference (LMD), the standard error of measurement (SEM) and the least significant difference (LSD). The LMD represents the smallest possible meaningful unit, SEM relates the transformed scale values to measurement uncertainty (one unit on the transformed scale represents roughly one standard error), and LSD represents a lower bound for how coarse the transformed scale can be without loss of valid information. However, while logit transformations are relatively common in the health sciences, use of LMD, SEM and LSD transformations appear to be uncommon despite their potential role. METHODS: Logit transformations were empirically illustrated based on 1053 responses to the Epworth Sleepiness Scale. Logit measures were transformed according to the LMD, SEM and LSD, and into 0-10, 0-100, and the original raw score (0-24) ranges. These transformations were conducted using a freely available Excel tool, developed by the authors, that transforms logits into user-defined ranges along with the LMD, SEM and LSD transformations. RESULTS: Resulting LMD, SEM and LSD transformations ranged 0-34, 0-17 and 0-12, respectively. When considering these relative to the three user-defined ranges, it is seen that the 0-10 range is narrower than the LSD range (i.e., loss of valid information), and a 0-100 range gives the impression of better precision than there is, since it is considerably wider than the LMD range. However, the 0-24 transformation appears reasonable since it is wider than the LSD, but narrower than the LMD ranges. CONCLUSIONS: It is suggested that LMD, SEM and LSD transformations are valuable for benchmarking in deciding appropriate ranges when transforming logit measures. This process can be aided by the Excel tool presented and illustrated in this paper.

Communication about medication management during patient-physician consultations in primary care: a participant observation study.

OBJECTIVE: To explore communication about medication management during annual consultations in primary care. DESIGN: passive participant observations of primary care consultations. SETTING: Two primary care centres in southern Sweden. PARTICIPANTS: Consultations between 18 patients (over the age of 60 years) with chronic diseases and 10 general practitioners (GPs) were observed, audio-recorded, transcribed and analysed using content analysis. RESULTS: Four categories emerged: communication barriers, striving for a shared understanding of medication management, evaluation of the current medication treatment and the plan ahead and behavioural changes in relation to medication management. Misunderstandings in communication, failure to report changes in the medication treatment and use of generic substitutes complicated mutual understanding and agreement on continued treatment. The need for behavioural changes to reduce the need for medication treatment was recognised but should be explored further. CONCLUSION: Several pitfalls, including miscommunication and inaccurate medication lists, for safe medication management were identified. The purpose of annual consultations should be clarified, individual treatment plans could be used more actively during primary care consultations and efforts are needed to improve verbal communication and information continuity.

Predictors of problems reported on the EQ-5D-3L dimensions among people with impaired vision in northern Portugal.

BACKGROUND: The EQ-5D index often fails to detect the effect of ophthalmic diseases and sight loss. Investigating predictors of individual EQ-5D health dimensions might reveal the underlying reasons. The aim of this study was to investigate predictors of health dimension ratings obtained with the EQ-5D-3L from participants with impaired vision representing a spectrum of eye diseases. METHODS: Observational cross-sectional study with participants recruited at four public hospitals in Portugal. Outpatients with visual acuity of 0.30 logMAR(6/12) or worse in the better-seeing eye were invited to participate. Participants completed two instruments: the EQ-5D-3L (measures participants' perceived health-related quality-of-life) and the Massof Activity Inventory (measures visual ability-ability to perform vision-related activities). This study used logistic regression models to identify factors associated with responses to the EQ-5D-3L. RESULTS: The study included 492 participants, mean age 63.4 years (range = 18-93), 50% females. The most common diagnosis was diabetic retinopathy (37%). The mean visual acuity in the better seeing eye was 0.65 logMAR (SD = 0.48) and the mean visual ability was 0.62 logits (SD = 2.04), the correlation between the two was r = - 0.511 (p < 0.001). Mobility and self-care were the health dimensions with the fewest problems (1% reported extreme problems), anxiety and depression the dimension with the most problems (24% reported extreme problems). ROC curve analysis showed that the EQ-5D index was a poor predictor of cases of vision impairment whilst visual ability given was a good predictor of cases of vision impairment. Visual ability was an independent predictor of the response for all dimensions, higher ability was always associated with a reduced odds of reporting problems. The odds of reporting problems were increased for females in 3 out of 5 dimensions. Comorbidities, visual acuity and age-category were predictors of the odds of reporting problems for one dimension each. CONCLUSIONS: The odds of reporting problems for the five health dimensions of the EQ-5D-3L were strongly influenced by the ability to perform vision-related activities (visual ability). The EQ-5D index showed poor performance at detecting vision impairment. These findings are informative and relevant for the clinic and for research evaluating the impact of eye diseases and disease treatments in ophthalmology.

Health care professionals' experiences of how an eHealth application can function as a value-creating resource - a qualitative interview study.

BACKGROUND: The number of patients with one or more chronic conditions is increasing globally. One strategy to achieve more sustainable care for these patients is by implementing use of home-based eHealth applications. Such services support patients to take on a more active role as value-creating co-producers of their own care, in collaboration with health care professionals. Health care professionals have a key role in the value creation process, but little is known about value formation within eHealth interactions, especially from their perspective. Therefore, this study aimed to provide a deeper understanding of how an eHealth application can function as a value-creating resource from the perspective of health care professionals. METHODS: Semi-structured interviews were conducted with thirteen health care professionals (nurses, physicians and first-line managers). Qualitative content analysis was used to analyze the interviews. RESULTS: The findings indicate that value formation processes are strongly influenced by the organizational preconditions and by the usability and functionality of technology. The experiences of the health care professionals indicated that value was conceptualized in dimensions of meaningfulness, building of relationships, building safety and feelings of trust. Although these dimensions were mainly expressed in a positive way, such as perceived improvement of medical care, accessibility and continuity, they also had a negative side that caused value destruction. This was primarily due to patient difficulties in using the application or making measurements. Subsequent efforts at value recovery resulted in value creation, but were often time-consuming for the professionals. CONCLUSIONS: This study contributes by extending conceptualizations of value to the role of health care professionals and by highlighting technology as sometimes facilitating and sometimes hampering value formation processes. The findings indicate that the eHealth application was a value-creating resource, facilitating proactive communication and supporting patients' engagement and control over their self-care. However, for the application to become a more valuable resource in practice and counteract inequity in care, it needs to be further developed to be adapted to the needs and preconditions of patients.

Patient experiences of self-care management after radical prostatectomy.

PURPOSE: Prostate cancer is the most common cancer form in Sweden and side effects of the leading treatment, radical prostatectomy, include urinary leakage and erectile dysfunction. Patients are recommended to perform self-care to reduce side effects, but their experiences of performing self-care management after radical prostatectomy are largely unexplored. The aim of this study was to deepen the understanding about patient experiences of support for managing self-care during the first six months after radical prostatectomy. METHODS: Eighteen patients were consecutively recruited six months after surgery and individual interviews were conducted. The study had a descriptive qualitative approach and inductive content analysis was used. RESULTS: Patients described self-care management during the first half-year after surgery as a progression with growth in self-management skills through interconnected phases, from initially striving to get a grasp of the situation and find supportive relationships, to getting grounded in the new situation and taking command of the situation. At six months after surgery, patients had reached a point where they needed to maneuver feelings about long-term consequences. CONCLUSIONS: Standardized routines ensure a certain level of care, but are sparsely adjustable to patients' progression in self-care management. For sustained self-care behaviors, tailored and interactive support is required from multiple disciplines and peers, in order for a patient to get grounded in and take command of the situation.

Patients' experiences of using an e-Health tool for self-management support after prostate cancer surgery: a deductive interview study explained through the FITT framework.

OBJECTIVE: To evaluate patients' experiences of using a web-based application, especially its usability as support for self-care activities after prostate cancer surgery. DESIGN: A deductive content analysis was used, stemming from the Fit between Individuals, Task and Technology (FITT) framework. SETTING: One surgical department in south of Sweden between October 2015 and April 2016 and between September 2017 and July 2018. PARTICIPANTS: Fifteen men who had undergone radical prostatectomy for prostate cancer. RESULTS: By organising data in accordance with the FITT model, three main categories with ten subcategories were identified. Patients gave feedback on functions that suited them and their needs, as well as potential adjustments and improvements. Patients experienced that ePATH gave them easy access to reliable information regarding their rehabilitation. Directed information about ePATH at enrolment was seen as important. ePATH was perceived to have a logical structure that was easy to follow. However, when the structure was unclear, patients became less motivated to use a function. CONCLUSIONS: Patients experienced ePATH as satisfactorily user-friendly and useful as a complementary self-management support after prostate cancer surgery, especially when the information and tasks were tailored to their preferences and the system design features supported individual autonomy.

Validation of the patient activation measure in patients at discharge from hospitals and at distance from hospital care in Sweden.

BACKGROUND: The Patient Activation Measure (PAM) is a recognized measure of how active patients are in their care, and has been translated into several languages and cultural contexts. Patient activity, self-care, and health literacy have become increasingly important aspects of health care, and thus reliable measures of these are needed. However, a Swedish translation of PAM is currently lacking. The aim of the study was to translate and assess the validity and reliability of the Swedish PAM-13. METHODS: A self-report questionnaire was handed out to 521 patients at ten medical, geriatric, and surgical wards, and one Virtual Health Room. The Rasch model was employed, using the partial credit model, to assess the functioning of the PAM scale, item fit, targeting, unidimensionality, local independence, differential item functioning (DIF), and person-separation index. Evidence of substantive, content, structural, and external validity was examined. RESULTS: Of the 521 patients who were consecutively handed a questionnaire, 248 consented to participate, yielding a response rate of 47.6%. The average measure for each category advanced monotonically. The difficulty of the PAM items ranged from - 1.55 to 1.26. The infit and outfit values for the individual items were acceptable. Items 1, 2, and 4 showed disordered thresholds. The mean person location was 1.48 (SD = 1.66). The person-item map revealed that there were no item representations at the top of the scale. The evidence for unidimensionality was ambiguous and response dependency was seen in some items. DIF was found for age. The person separation index was 0.85. CONCLUSION: The Swedish PAM-13 was reliable, but was not conclusively found to represent one underlying construct. It seems that the Swedish PAM-13 lacks strong evidence for substantive, content, and structural validity. Although valid and reliable measures of ability for activation in self-care among patients are highly warranted, we recommend further development of PAM-13 before application in everyday clinical care.

A classical test theory evaluation of the Sleep Condition Indicator accounting for the ordinal nature of item response data.

BACKGROUND: Insomnia symptoms are common among young adults and affect about 5% to 26% of 19 to 34-year-olds. In addition, insomnia is associated with poor mental health and may affect daily performance. In research, as well as in clinical practice, sleep questionnaires are used to screen for and diagnose insomnia. However, most questionnaires are not developed according to current DSM-5 diagnostic criteria. An exception is the recently developed Sleep Condition Indicator (SCI), an eight-item scale screening for insomnia. AIM: The aim of this study was to perform a Classical Test Theory (CTT) based psychometric evaluation of the SCI in a sample of Swedish university students, by taking the ordinal nature of item level data into account. METHODS: The SCI was translated into Swedish and distributed online to undergraduate students at three Swedish universities, within programs of health, psychology, science or economy. Of 3673 invited students, 634 (mean age 26.9 years; SD = 7.4) completed the questionnaire that, in addition to the SCI, comprised other scales on sleep, stress, lifestyle and students' study environment. Data were analyzed according to CTT investigating data completeness, item homogeneity and unidimensionality. RESULTS: Polychoric based explorative factor analysis suggested unidimensionality of the SCI, and internal consistency was good (Cronbach's alpha, 0.91; ordinal alpha, 0.94). SCI scores correlated with the Insomnia Severity Index (-0.88) as well as with sleep quality (-0.85) and perceived stress (-0.50), supporting external construct validity. CONCLUSIONS: These observations support the integrity of the of the SCI. The SCI demonstrates sound CTT-based psychometric properties, supporting its use as an insomnia screening tool.

Enhanced Patient Activation in Cancer Care Transitions: Protocol for a Randomized Controlled Trial of a Tailored Electronic Health Intervention for Men With Prostate Cancer.

BACKGROUND: Prostate cancer has increased in incidence worldwide and is the leading cause of cancer death in 24 countries. The most common treatment is radical prostatectomy. However, surgery is associated with postoperative complications such as urinary incontinence and sexual dysfunction, causing decreased quality of life. If survivors are encouraged to be more active in self-care management, the symptom burden may decrease and quality of life may improve. An electronic health (eHealth) intervention based on motivational behavioral theory has been developed for this purpose. OBJECTIVE: This study aimed to compare the effectiveness of standard care in combination with a tailored eHealth and mobile health self-management support system, electronic Patient Activation in Treatment at Home (ePATH), with standard care of adverse effects of prostate cancer treatment (urinary incontinence and sexual functioning) in men undergoing radical prostatectomy. The secondary aim was to test the effect on patient activaftion, motivation, overall well-being, and health literacy over time in and between groups. METHODS: A pragmatic multicenter, block-randomized controlled trial with 2 study arms, standard care (control) and eHealth-assisted standard care (intervention), for patients undergoing radical prostatectomy. For 80% power, a sample of 242 men will need to be recruited. RESULTS: Recruitment started in January 2018 and is expected to be completed by August 2019. Data collection will be completed in August 2020. The first cross-sectional results from this trial are anticipated to be published in January 2020. CONCLUSIONS: With the increasing number of prostate cancer survivors, attention should be paid to rehabilitation, psychosocial care, and support for endurance of self-care to reduce suffering from adverse treatment effects, poor quality of life, and depression because of postoperative complications. This project may increase knowledge of how patients can be supported to feel involved in their care and returning to as normal a life as possible. The anticipated effects of ePATH could improve health outcomes for individuals and facilitate follow-up for health care professionals. TRIAL REGISTRATION: International Standard Randomised Controlled Trial Number: 18055968; http://www.isrctn.com/ISRCTN18055968 (Archived by WebCite at http://www.isrctn.com/ISRCTN18055968). INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/11625.

The extended palliative phase of dementia - An integrative literature review.

This article presents an integrative literature review of the experience of dementia care associated with the extended palliative phase of dementia. The aim was to highlight how dementia is defined in the literature and describe what is known about the symptomatology and management of advanced dementia regarding the needs and preferences of the person with dementia and their family carer/s. There was no consistent definition of advanced dementia. The extended palliative phase was generally synonymous with end-of-life care. Advanced care planning is purported to enable professionals to work together with people with dementia and their families. A lack of understanding of palliative care among frontline practitioners was related to a dearth of educational opportunities in advanced dementia care. There are few robust concepts and theories that embrace living the best life possible during the later stages of dementia. These findings informed our subsequent work around the concept, 'Dementia Palliare'.