Background: Patient activation is associated with both health outcomes and the utilization of healthcare resources. Since various factors influence activation levels among older ill adults, further exploration of this topic is needed. Specifically, we aim to examine the extent to which changes over time in self-rated symptoms of depression are associated with changes in patient activation and to what extent self-rated health status and satisfaction of basic psychological needs (autonomy, relatedness, and competence) have a mediation effect. Methods: A longitudinal and correlational design was employed in which two hundred and seven participants with heart failure or chronic obstructive pulmonary disease were recruited from two hospitals in the middle of Sweden. The sample used in this study is the same as that used in a randomized controlled trial. A questionnaire was administered at baseline, and at 30-, 90-, and 180 days post-discharge, involving ratings of depression, patient activation, self-rated health, and satisfaction of basic psychological needs (autonomy, relatedness, and competence). As the results from the original study showed no difference between the two randomized groups in patient activation, the analysis in this study was conducted using a combined sample in which the intervention and control groups were merged. For estimation of the direct effects and the components of indirect effects, we employed multilevel modeling using a linear mixed model, and to test mediation, the stand-alone program RMediation was used. Results: Over time, increases in depressive symptoms were associated with reduced patient activation, with this relationship mediated by declines in relatedness and competence. No evidence was found showing that autonomy or self-rated health had a mediation effect. Conclusions: The results indicate that older chronically ill individuals may benefit from interventions targeting psychological mediators to improve and sustain activation.

OBJECTIVES:The aim is to evaluate the effects of a motivational interviewing-based intervention, Supporting Patient Activation in Transition to Home, on rehospitalisation and patient activation among patients with heart failure or chronic obstructive pulmonary disease. DESIGN:A randomised, controlled, analysis-blinded trial was conducted. SETTING:Participants were recruited from two hospitals in mid-Sweden and the intervention and interviews were conducted post-discharge. PARTICIPANTS:207 participants with heart failure or chronic obstructive pulmonary disease were recruited. Participants were randomised to receive five motivational interviewing sessions post-discharge (n=103) or a control group (n=104). OUTCOME MEASURES:Rehospitalisation within 180 days post-discharge was retrieved, and patient activation was assessed using the Patient Activation Measure at baseline, 30, 90 and 180 days post-discharge. We used a generalised estimating equation to assess the difference in the secondary outcome, patient activation, between the intervention group and the control group during the 180-day follow-up. RESULTS:No statistically significant differences between the groups were found for rehospitalisation (p=0.33 to 0.41) or patient activation over time (B=-1.67, -0.71 and -0.83 (95% CI -5.45 to 2.10, -4.06 to 2.64 and -4.28 to 2.62), respectively). CONCLUSION:Post-discharge motivational interviewing to decrease rehospitalisation or support patient activation does not seem beneficial for patients with heart failure or chronic obstructive pulmonary disease. The high disease burden may have limited patient participation in the intervention. TRIAL REGISTRATION NUMBER:NCT02823795.

Prostate cancer treatment commonly affects sexual function. However, how effective rehabilitation programmes should be constructed is yet to be determined. The aim of this study was to describe the expectations, experiences and preliminary effects of a digital sexual rehabilitation programme among couples after radical prostatectomy and to determine its feasibility. 19 couples were included in the study, of which 15 completed the programme. Data were collected through semi-structured interviews at baseline and after programme completion using an interview guide developed for this study. Reflexive thematic analysis was used to interpret qualitative data, and descriptive statistics summarised quantitative outcomes from questionnaires. Participants found the programme meaningful and helpful. The digital format was valued for its flexibility and accessibility. Participants desired more tailored content and interactive elements. The programme positively impacted communication about sexual issues within couples. Participants also highlighted the need for peer support and more structured guidance on physical and pharmaceutical strategies. Some joined the programme to support others rather than for personal need, which may have influenced perceived effects. Questionnaire data showed changes in sexual function among patients and stable relationship satisfaction, though interpretation is limited. The digital programme was feasible and well-received, with positive effects on communication and perceived support. Findings highlight the importance of clear inclusion criteria, timing of intervention delivery and tailoring content to individual needs. These insights can inform future development of digital psychosocial interventions for sexual rehabilitation in cancer care.

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.

Introduction Restless Legs Syndrome (RLS) is a neurological disorder characterized by an urge to move arms and legs, commonly combined with distress, pain and motor restlessness. It can cause fragmented sleep, daytime symptoms, and decreased quality of life. Pharmacological treatment can suppress symptoms, but not cure. When challenged with illness, people may turn to their inner psychological resources such as self-esteem and mastery. The Pearlin Mastery scale was developed to study stress and coping, is commonly used in people with chronic illnesses, however, not yet validated in people with RLS. Aim The aim was to test reliability and construct validity of the Pearlin Mastery Scale in persons with RLS. Methods A cross-sectional postal survey including the Pearlin Mastery Scale, Restless Legs Syndrome-6 Scale, Pittsburgh Sleep Quality Index and Patient Health Questionnaire was sent out to members (n = 1500) of the national RLS association and 788 (52.5%) agreed to participate. Data were analyzed using classical test theory, Confirmatory factor analysis and Rasch measurement theory analysis. Hypothesis testing for construct validity was done by bivariate correlation analyses. Results Most respondents were women (65%), retired (71%) and had a mean-age of 70.8 years (SD 11.4). The 7-item version of the Pearlin Mastery Scale showed poor fit to the one factor model. After omitting the two positively worded items (i.e., item 4 and 6), the 5-item version was found to be unidimensional, with satisfactory internal consistency. However, all items showed considerable ceiling effects. No measurement variance was seen regarding age-groups or sex. Higher level of mastery was moderately correlated with less depressive symptoms but only weakly correlated to RLS-related sleep problems. Conclusion The 5-item version of the Pearlin Mastery Scale is suggested to be used in persons with RLS due to its acceptable psychometric properties. The instrument could be applied as an outcome measure for behavioral change interventions aiming to support mastery in RLS.

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.

Restless legs syndrome (RLS) is a highly prevalent condition that significantly disrupts sleep and causes reduced quality of life. While previous RLS research has mainly focused on the pharmacological treatment, this study presents the first instrument to measure self-care, the RLS-Self-care Behaviour questionnaire (RLS-ScBq). Self-care, defined as an active decision-making process, can empower patients to effectively participate in their own healthcare through awareness, self-control, and self-reliance to cope with their disease. Self-care can in a RLS context include actions such as physical exercise, meditation, and massage. Hence, the aim of this study is to explore the psychometric properties of the RLS-ScBq in patients with RLS. A cross-sectional design, including 788 patients with RLS (65% women, mean age 70.8 years, [standard deviation (SD) =11.4]) was used. Sociodemographics, comorbidities, and RLS-related treatment data, including insomnia symptoms (i.e., Insomnia Severity Index), daytime sleepiness (i.e., Epworth Sleepiness Scale) and RLS symptoms (i.e., RLS-6 scale) were collected. The validity and reliability of the RLS-ScBq were investigated using exploratory factor analysis and Rasch models. The two-factor solution (i.e., physical, and mental actions) showed an explained variance of 32.33% for The Self-care Behaviour Frequency part and 36.28% for The Benefit of Self-care Behaviour part. The internal consistency measured by Cronbach's α was 0.57 and 0.60, and McDonald's ω was 0.60 and 0.67, respectively. No differential item functioning was identified for gender, age, insomnia, daytime sleepiness, or RLS severity. The eight-item RLS-ScBq can serve as a tool enabling healthcare personnel to explore use and benefit of self-care activities in patients with RLS.

Care transitions are high-risk processes, especially for people with complex or chronic illness. Discharge letters are an opportunity to provide written information to improve patients’ self-management after discharge. The aim of this study is to determine the impact of discharge letter content on unplanned hospital readmissions and self-rated quality of care transitions among patients 60 years of age or older with chronic illness. The study had a convergent mixed methods design. Patients with chronic obstructive pulmonary disease or congestive heart failure were recruited from two hospitals in Region Stockholm if they were living at home and Swedish-speaking. Patients with dementia or cognitive impairment, or a “do not resuscitate” statement in their medical record were excluded. Discharge letters from 136 patients recruited to a randomised controlled trial were coded using an assessment matrix and deductive content analysis. The assessment matrix was based on a literature review performed to identify key elements in discharge letters that facilitate a safe care transition to home. The coded key elements were transformed into a quantitative variable of “SAFE-D score”. Bivariate correlations between SAFE-D score and quality of care transition as well as unplanned readmissions within 30 and 90 days were calculated. Lastly, a multivariable Cox proportional hazards model was used to investigate associations between SAFE-D score and time to readmission. All discharge letters contained at least five of eleven key elements. In less than two per cent of the discharge letters, all eleven key elements were present. Neither SAFE-D score, nor single key elements correlated with 30-day or 90-day readmission rate. SAFE-D score was not associated with time to readmission when adjusted for a range of patient characteristics and self-rated quality of care transitions. While written summaries play a role, they may not be sufficient on their own to ensure safe care transitions and effective self-care management post-discharge. Clinical Trials. giv, NCT02823795, 01/09/2016.

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.

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.

Introduction Prostate cancer is often treated with radical prostatectomy, but surgery can leave patients with side effects. Patients who actively take part in their rehabilitation have been shown to achieve better clinical outcomes. eHealth support has the potential to increase patient activation, but has rarely been evaluated in long-term randomized controlled trials. Therefore, we evaluated the effects on patient activation of eHealth support (electronic Patient Activation in Treatment at Home, ePATH) based on motivational theory. The aim was to investigate the effects of eHealth support on patient activation at 6 and 12 months after radical prostatectomy, compared with standard care alone, and associations with baseline patient activation and depression. Methods A multicentre randomized controlled trial with two study arms was conducted. Men planned for radical prostatectomy at three county hospitals in southern Sweden were included and randomized to the intervention or control group. The effects of ePATH on the secondary outcome, patient activation, were evaluated for one year after surgery using the patient activation measure and analysed using a linear mixed model. Results The study included 170 men during 2018–2019. In the intervention group, 64% (53/83) used ePATH. The linear mixed model showed no significant differences between groups in patient activation [β -2.32, P .39; CI -7.64–3.00]. Baseline patient activation [β 0.65, P < .001; CI 0.40–0.91] and depression [β -0.86, P .03; CI -1.64– -0.07] statistically impacted patient activation scores over one year. Conclusions ePATH had no impact on patient activation during long-term prostate cancer rehabilitation. However, patient activation at baseline and depression scores significantly influenced patient activation, underlining the need to assess these aspects in prostate cancer surgery rehabilitation. Trial registration ISRCTN Registry ISRCTN18055968, (07/06/2018); https://www.isrctn.com/ISRCTN18055968; International Registered Report Identifier: RR2-10.2196/11625.

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.

BackgroundProstate 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. ObjectiveThis 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. MethodsA 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. ResultsThis 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 (β=−5.60; P=.09; 95% CI −12.15 to −0.96) or sexual function (β=−.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). ConclusionsePATH 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 RegistrationISRCTN Registry ISRCTN18055968; https://www.isrctn.com/ISRCTN18055968 International Registered Report Identifier (IRRID)RR2-10.2196/11625

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.

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.

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.

Plötsligt hjärtstopp är ett globalt hälsoproblem, som tyvärr har en låg överlevnadsgrad. Ungefär 20 % överlever ett hjärtstopp om det sker inne på ett sjukhus, endast hälften så många (ca 10 %) överlever om det sker utanför sjukhus. I Sverige är statistiken något bättre där ca 37 % överlever vid ett hjärtstopp på sjukhus och 11 % om det sker utanför sjukhus. Trots detta är det ett tillstånd som i de flesta fall leder till döden.