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 [beta -2.32, P .39; CI -7.64-3.00]. Baseline patient activation [beta 0.65, P < .001; CI 0.40-0.91] and depression [beta -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.

Background: Patients diagnosed with colorectal cancer follow standardized care pathways with diagnostic procedures and tailored treatment to ensure high-quality surgical care. The focus is primarily on surgical procedures and outcomes, and patients and healthcare professionals describe shortcomings in individual support and a lack of opportunities for participation.

Aims and Objectives: To describe patient experiences within standardized care pathways for colorectal cancer.

Methods: A qualitative descriptive design was used. The study was conducted at a surgery unit in southern Sweden. Convenience sampling was used and included sixteen patients. Data were collected using in-depth semi-structured interviews and analysed using qualitative conventional content analysis.

Results: Three themes emerged in the analysis: Travelling along the colorectal cancer care pathway, bearing the mark of the disease, and telling one’s story. According to the patients’ narratives, interacting and continuous relationships with healthcare professionals were highlighted as important, feelings such as loneliness and the need for inclusion played a significant role to achieve participation.

Conclusion: There is a discrepancy between the intentions of standardized care pathways and the patients experience within. Despite having access to healthcare professionals during standardized care pathways, patients may still experience feelings of loneliness and exclusion. Continuous contact with a specialist/contact nurse is seen as crucial to facilitate individual support and active participation. These insights underscore the importance of the role of specialist nurses in providing person-centered care within standardized care pathways, in bridging the gaps between clinical practice and patient expectations.

Objective/BackgroundThe 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/MethodsIn 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.ResultsThe 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).ConclusionsThis 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.

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 alpha was 0.57 and 0.60, and McDonald's omega 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.

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.

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.

Background

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.

Methods

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.

Results

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.

Conclusions

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.

Trial registration

Clinical Trials. giv, NCT02823795, 01/09/2016.

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. (c) 2023 The Author(s). Published by Elsevier Inc. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/)

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.

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.