Quality Appraisal of Quality of Life Research in Children and Adolescents with Food Allergy: A Systematic Review.

INTRODUCTION: Quality of life (QOL) and health-related quality of life (HRQOL) in children and adolescents with food allergies have been an important and steadily growing field of research for the past 20 years. There seem to be conceptual and methodological challenges that might influence the face validity of QOL and HRQOL research in general health research, but this has not been investigated in pediatric and adolescent food allergy research up until now. The aim of this study was to perform a systematic review of the QOL and HRQOL studies on food allergy in children and adolescents under the age of 18. METHODS: The systematic review was conducted on studies purporting to measure QOL or HRQOL in children and adolescents with food allergies. The literature search was developed in Ovid MEDLINE and databases used in the review were Embase, Cochrane Database of Systematic Reviews, CINAHL, and Scopus. Studies were evaluated based on a set of face validity criteria developed by Gill and Feinstein in 1994 and refined by Moons et al. in 2004. RESULTS: Out of 61 studies eligible for the review, 11 (18%) defined QOL or HRQOL and two distinguished QOL from HRQOL. The Food Allergy Quality of Life (FAQLQ) instrument series is the most frequently used HRQOL measurement among the studies included. QOL and HRQOL were employed interchangeably in half of the studies, some of them also using a third term in addition. CONCLUSION: Our findings lead to the conclusion that the research field investigated contains methodological and conceptual shortcomings regarding QOL and HRQOL. An increased awareness toward the terminology as well as consideration of points to reflect upon will be beneficial, as this will also improve the validity of future studies.

Implementation of advance care planning in the routine care for acutely admitted patients in geriatric units: protocol for a cluster randomized controlled trial.

BACKGROUND: Acutely ill and frail older adults and their next of kin are often poorly involved in treatment and care decisions. This may lead to either over- or undertreatment and unnecessary burdens. The aim of this project is to improve user involvement and health services for frail older adults living at home, and their relatives, by implementing advance care planning (ACP) in selected hospital wards, and to evaluate the clinical and the implementation interventions. METHODS: This is a cluster randomized trial with 12 hospital units. The intervention arm receives implementation support for 18 months; control units receive the same support afterwards. The ACP intervention consists of 1. Clinical intervention: ACP; 2. Implementation interventions: Implementation team, ACP coordinator, network meetings, training and supervision for health care personnel, documentation tools and other resources, and fidelity measurements with tailored feedback; 3. Implementation strategies: leadership commitment, whole ward approach and responsive evaluation. Fidelity will be measured three times in the intervention arm and twice in the control arm. Here, the primary outcome is the difference in fidelity changes between the arms. We will also include 420 geriatric patients with one close relative and an attending clinician in a triadic sub-study. Here, the primary outcomes are quality of communication and decision-making when approaching the end of life as perceived by patients and next of kin, and congruence between the patient's preferences for information and involvement and the clinician's perceptions of the same. For patients we will also collect clinical data and health register data. Additionally, all clinical staff in both arms will be invited to answer a questionnaire before and during the implementation period. To explore barriers and facilitators and further explore the significance of ACP, qualitative interviews will be performed in the intervention units with patients, next of kin, health care personnel and implementation teams, and with other stakeholders up to national level. Lastly, we will evaluate resource utilization, costs and health outcomes in a cost-effectiveness analysis. DISCUSSION: The project may contribute to improved implementation of ACP as well as valuable knowledge and methodological developments in the scientific fields of ACP, health service research and implementation science. TRIAL REGISTRATION: ClinicalTrials.gov Identifier NCT05681585. Registered 03.01.23.

Barriers and facilitators to implementing advance care planning in naïve contexts - where to look when plowing new terrain?

BACKGROUND: Advance care planning (ACP) is a way of applying modern medicine to the principle of patient autonomy and ensuring that patients receive medical care that is consistent with their values, goals and preferences. Robust evidence supports the benefits of ACP, but it remains an underutilized resource in most countries. This paper goes from the naïve point of view, and seeks to identify the barriers and facilitators to implementation in unfamiliarized contexts and in a whole system approach involving the clinical, institutional and policy level to improve the implementation of ACP. METHODS: Qualitative interviews were chosen to enable an explorative, flexible design. Qualitative interviews were conducted with 40 health care professionals and chief physicians in hospitals and in municipalities. The thematic analysis was done following Braun and Clarke's strategy for thematic analysis. RESULTS: The main reported barriers were the lack of time and space, a lack of culture and leadership legitimizing ACP, lack of common communication systems, and unclear responsibility about who should initiate, resulting in missed opportunities and overtreatment. Policy development, public and professional education, and standardization of documentation were reported as key to facilitate ACP and build trust across the health care system. CONCLUSIONS: Progressively changing the education of health professionals and the clinical culture are major efforts that need to be tackled to implement ACP in unfamiliarized contexts, particularly in contexts where patient's wishes are not legally binding. This will need to be tackled through rectifying the misconception that ACP is only about death, and providing practical training for health professionals, as well as developing policies and legislation on how to include patients and caregivers in the planning of care.

Health literacy in individuals with knee pain-a mixed methods study.

BACKGROUND: Low health literacy is associated with worse pain and poorer self-management. This study (1) examined the level of health literacy and associations with lifestyle habits, health status, chronic pain, and radiographic knee osteoarthritis; and (2) explored experiences illuminating health literacy among individuals with knee pain. METHODS: A convergent parallel mixed-methods design was used, including 221 individuals. Health literacy was assessed by HLS-EU-Q16 and eHEALS. The questionnaire included questions on lifestyle habits, health status, and pain distribution. Radiographic knee osteoarthritis was assessed with x-rays. Associations were analysed using logistic regression analyses. Individual semi-structured interviews were conducted (n = 19) and analysed with qualitative content analysis. RESULTS: The result showed that 71% reported sufficient health literacy. Higher education, healthy lifestyle habits, better general health, and absence of widespread pain were associated with sufficient health literacy. Experiences regarding health literacy influencing the decision-making process toward a decision on action comprised: (1) searching for information actively or passively; (2) processing of the information included being informed, critical, and interpretive; and (3) taking a stand on the information based on trustfulness and motivation. CONCLUSION: Seven out of 10 reported sufficient health literacy. Despite this, unhealthy lifestyles were common, suggesting that having sufficient HL is not enough for a behavioural change and the decision-making process, including different phases such as searching, processing, and taking a stand on health information is important to consider. More research on health literacy is needed to gain knowledge of how best to develop health promotion in individuals with knee pain.

Differences in income trajectories according to psychological distress and pain: A longitudinal study among Norwegian social assistance recipients.

Aim: Mental diseases and pain are serious public health problems and are a leading cause of disability worldwide. The aim of this study is to describe how pain and psychological distress separately and in combination are associated with four income trajectories over nine years in a cohort of long-term social assistance recipients (LTRs). Methods: A cohort of 456 LTRs from 14 municipalities in Norway were divided into four groups based on the presence or absence of pain and/or psychological distress. These were surveyed in 2005, and later linked by personal identification numbers to high-quality longitudinal administrative data covering the period 2005-2013. Methods include calculation of income statuses based on main sources of income, and multinomial logistic regression analysis. Results: In the group without pain and psychological distress, earnings from work as main source of income (14.6-38.0%) and disability benefits (2.9-16.1%) increased over the period. In the 'double burden' group the proportions who had social assistance as main income decreased (68.2-21.5%) and the proportions with disability benefits increased over time (5.6-36.6%). Only 27.2% of the total sample had earnings from work as their main income in 2013. Conclusion: LTRs are extra burdened by pain and psychological distress, and this has consequences for their life opportunities and income trajectories. This study indicates that the primary goal of the social assistance system, to make the clients self-sufficient, is hard to achieve. A better co-operation between health services and work-related services is needed.

Renal recipients' knowledge and self-efficacy during first year after implementing an evidence based educational intervention as routine care at the transplantation clinic.

BACKGROUND: Following an implementation plan based on dynamic dialogue between researchers and clinicians, this study implemented an evidence-based patient education program (tested in an RCT) into routine care at a clinical transplant center. The aim of this study was to investigate renal recipients' knowledge and self-efficacy during first year the after the intervention was provided in an everyday life setting. METHODS: The study has a longitudinal design. The sample consisted of 196 renal recipients. Measurement points were 5 days (baseline), 2 months (T1), 6 months (T2), and one-year post transplantation (T3). Outcome measures were post-transplant knowledge, self-efficacy, and self-perceived general health. RESULTS: No statistically significant changes were found from baseline to T1, T2, and T3. Participants' levels of knowledge and self-efficacy were high prior to the education program and did not change throughout the first year post transplantation. CONCLUSION: Renal recipients self-efficacy and insight in post-transplant aspects seem to be more robust when admitted to the hospital for transplantation compared to baseline observations in the RCT study. This may explain why the implemented educational intervention did not lead to the same positive increase in outcome measures as in the RCT. This study supports that replicating clinical interventions in real-life settings may provide different results compared to results from RCT's. In order to gain a complete picture of the impacts of an implemented intervention, it is vital also to evaluate results after implementing findings from RCT-studies into everyday practice.

Exploring health literacy in patients with chronic kidney disease: a qualitative study.

BACKGROUND: Patients with chronic kidney disease make day-to-day decisions about how to self-manage their disease. Chronic kidney disease (CKD) includes a risk for progression towards end-stage renal disease and the development of comorbidities, such as cardiovascular disease, which represents the leading cause of death among these patients. To reduce these risks, CKD patients are recommended to follow a healthy lifestyle with physical activity, food and fluid restrictions, and adherence to complex medication regimes throughout all phases of the disease. To manage the complexity of this health situation, health literacy (HL) is considered essential. The current prevailing understanding is that HL is a multidimensional concept and comprises a range of cognitive, affective, social, and personal skills that determine the motivation and ability to gain access to, understand, and use health information. Recently, we investigated multiple aspects of HL in CKD patients in a quantitative cross-sectional study utilizing the Health Literacy Questionnaire (HLQ) and observed that finding good health information and appraising health information were the most challenging aspects of HL. This study aimed to explore CKD patients' lived experiences of different dimensions of HL presented in the HLQ. METHODS: This qualitative study utilized in-depth semistructured interviews. Twelve patients with different levels of HL were included. The interviews were analyzed using thematic analysis as described by Braun and Clarke. RESULTS: We identified three main themes that were significant for CKD patients' HL: 1. Variation in people's attitudes and behavior as health information seekers, 2. The problem of fragmented healthcare in the context of multimorbidity makes the healthcare system challenging to navigate, and 3. The value of a good relationship with healthcare providers. CONCLUSION: CKD patients take different approaches to health information. Limiting or avoiding health information may be a strategy used by some individuals to cope with the disease and does not necessarily mean that health information is inaccessible or difficult to understand. Comorbidity and a fragmented healthcare system can make the healthcare system challenging to navigate. A good and trusting relationship with healthcare providers seems to promote several aspects of HL and should be promoted to optimize CKD patients' HL.

Working with patients suffering from chronic diseases can be a balancing act for health care professionals - a meta-synthesis of qualitative studies.

BACKGROUND: The number of patients with long-term chronic diseases is increasing. These patients place a strain on health care systems and health care professionals (HCPs). Presently, we aimed to systematically review the literature on HCPs' experiences working with patients with long-term chronic diseases such as type 2 diabetes, chronic obstructive pulmonary disease (COPD), and chronic kidney disease (CKD). METHOD: A systematic search of papers published between 2002 and July 2019 was conducted in the Embase, AMED, PsycINFO, MEDLINE, CINAHL, and COCHRANE databases to identify studies reporting qualitative interviews addressing HCPs' experiences working with adults with COPD, CKD or type 2 diabetes. An interdisciplinary research group were involved in all phases of the study. With the help of NVivo, extracts of each paper were coded, and codes were compared across papers and refined using translational analysis. Further codes were clustered in categories that in turn formed overarching themes. RESULTS: Our comprehensive search identified 4170 citations. Of these, 20 papers met our inclusion criteria. Regarding HCPs' experiences working with patients with COPD, CKD, or type 2 diabetes, we developed 10 sub-categories that formed three overarching main themes of work experiences: 1) individualizing one's professional approach within the clinical encounter; 2) managing one's emotions over time; 3) working to maintain professionalism. Overall these three themes suggest that HCPs' work is a complex balancing act depending on the interaction between patient and professional, reality and professional ideals, and contextual support and managing one's own emotions. CONCLUSION: Few qualitative studies highlighted HCPs' general working experiences, as they mainly focused on the patients' experiences or HCPs' experiences of using particular clinical procedures. This study brings new insights about the complexity embedded in HCPs' work in terms of weighing different, often contrasting aspects, in order to deliver appropriate practice. Acknowledging, discussing and supporting this complexity can empower HCPs to avoid burning out. Leaders, health organizations, and educational institutions have a particular responsibility to provide HCPs with thorough professional knowledge and systematic support. TRIAL REGISTRATION: PROSPERO number: CRD42019119052.

Tailored Communication Within Mobile Apps for Diabetes Self-Management: A Systematic Review.

BACKGROUND: The prevalence of diabetes is increasing and with the requirements for self-management and risk of late complications, it remains a challenge for the individual and society. Patients can benefit from support from health care personnel in their self-management, and the traditional communication between patients and health care personnel is changing. Smartphones and apps offer a unique platform for communication, but apps with integrated health care personnel communication based on patient data are yet to be investigated to provide evidence of possible effects. OBJECTIVE: Our goal was to systematically review studies that aimed to evaluate integrated communication within mobile apps for tailored feedback between patients with diabetes and health care personnel in terms of (1) study characteristics, (2) functions, (3) study outcomes, (4) effects, and (5) methodological quality. METHODS: A systematic literature search was conducted following our International Prospective Register of Systematic Reviews (PROSPERO) protocol, searching for apps with integrated communication for persons with diabetes tested in a controlled trial in the period 2008 to 2016. We searched the databases PubMed, Medical Literature Analysis and Retrieval System Online (MEDLINE), Cumulative Index to Nursing and Allied Health Literature (CINAHL), Cochrane Central, Excerpta Medica database (EMBASE), ClinicalTrials.gov, and the World Health Organization (WHO) International Clinical Trials Registry Platform. The search was closed in September 2016. Reference lists of primary articles and review papers were assessed. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines were followed, and we applied the Cochrane risk of bias tool to assess methodological quality. RESULTS: We identified 2822 citations and after duplicate removal, we assessed 1128 citations. A total of 6 papers were included in this systematic review, reporting on data from 431 persons participating in small trials of short duration. The integrated communication features were mostly individualized as written non-real-time feedback. The number of functions varied from 2 to 9, and blood glucose tracking was the most common. HbA1c was the most common primary outcome, but the remaining reported outcomes were not standardized and comparable. Because of both the heterogeneity of the included trials and the poor methodological quality of the studies, a meta-analysis was not possible. A statistically significant improvement in the primary measure of outcome was found in 3 of the 6 included studies, of which 2 were HbA1c and 1 was mean daytime ambulatory blood pressure. Participants in the included trials reported positive usability or feasibility postintervention in 5 out of 6 trials. The overall methodological quality of the trials was, however, scored as an uncertain risk of bias. CONCLUSIONS: This systematic review highlights the need for more trials of higher methodological quality. Few studies offer an integrated function for communication and feedback from health care personnel, and the research field represents an area of heterogeneity with few studies of highly rigorous methodological quality. This, in combination with a low number of participants and a short follow-up, is making it difficult to provide reliable evidence of effects for stakeholders.

Feeling safe and motivated to achieve better health: Experiences with a partnership-based nursing practice programme for in-home patients with chronic obstructive pulmonary disease.

AIMS AND OBJECTIVES: To explore chronic obstructive pulmonary disease patients' experiences with a partnership-based nursing practice programme in the home setting. BACKGROUND: Patients with chronic obstructive pulmonary disease suffer from psychological and physiological problems, especially when they return home after hospitalisation from exacerbation. Many express a need for information and knowledge about chronic obstructive pulmonary disease. Partnership as practice is a patient-centred framework providing an individualised practice for each patient. This study intends to achieve a nuanced and improved understanding of chronic obstructive pulmonary disease patients' experiences with a partnership-based nursing practice programme comprising home visits from a respiratory nurse after hospital discharge, alongside interdisciplinary collaboration. DESIGN: This study has a qualitative design with interviews. METHODS: Six individual semi-structured interviews collected in 2012-2013 constitute the material. Interviews were recorded, transcribed to written text and analysed using systematic text condensation. RESULTS: Three key themes were identified: to be seen, talked with and understood; healthcare support at home-continuity, practical support and facilitation; and exchange of knowledge. However, there were two generic themes that permeated the material: feeling safe and comforted, and motivation to achieve better health. CONCLUSIONS: Patients with chronic obstructive pulmonary disease can experience feeling safe and comforted, and be motivated to make changes in order to achieve better health after participating in a partnership-based nursing practice programme that includes home visits from a respiratory nurse and interdisciplinary cooperation after hospital discharge. To feel safe is of great importance, and how this relates to the patient's ability to cope with illness should be explored in further research. RELEVANCE TO CLINICAL PRACTICE: The results suggest that the partnership-based nursing practice programme that includes home visits and interdisciplinary collaboration can be a good approach to meeting the complexity of the chronic obstructive pulmonary disease patient's health needs.

Association between general self-efficacy, social support, cancer-related stress and physical health-related quality of life: a path model study in patients with neuroendocrine tumors.

BACKGROUND: A diagnosis of neuroendocrine tumors (NET) provides challenges to patients and clinicians due to physical side effects of and mental response to treatment resulting in increased perceived stress. General self-efficacy, social support and cancer-related stress are key factors in coping. Thus, knowledge of these factors may be of value in improving health-related quality of life (HRQoL). The aim of the study was to examine the relationships between general self-efficacy, social support, cancer-related stress and HRQoL in patients with NET using a path model. METHODS: 196 Norwegian patients living with NET were enrolled in this cross-sectional study. Inclusion criteria were: patients with tumors restricted to the GI tract; ability to speak and write Norwegian; over 18 years of age; undergoing medical treatment for NET. Measures used in the study were background characteristics, Health-related Quality of Life (SF-36), the Impact of Event Scale (IES), General Self-efficacy and the Interpersonal Support Evaluation List (ISEL). Relationships between sociodemographic variables, general self-efficacy, social support, cancer-related stress and mental and physical components scores were tested by path analysis with AMOS 22 using maximum standard likelihood estimation. RESULTS: The sample consisted of 50.5 % women and the average age was 65 years and the median disease duration was 4 years. Sociodemographic variables of gender, education and whether the patient lived alone or with someone were unrelated (directly or indirectly) to HRQoL. Age was directly and negatively correlated with physical HRQoL, general self-efficacy and social support in a well-fitting path model. General self-efficacy modified the negative effects of age on physical HRQoL. Physical and mental HRQoL were not associated with cancer-related stress. Higher social support was related to less stress. CONCLUSION: Intervening to improve general self-efficacy and social support for patients with NET may improve their HRQoL.

Long-term, self-reported health outcomes in kidney donors.

BACKGROUND: The wide use of healthy persons as kidney donors calls for awareness of risks associated with donation. Live kidney donation may impair quality of life (QOL) and result in fatigue. Long-term data on these issues are generally lacking in the donor population. Thus we aimed to investigate long-term self-reported health outcomes in a nationwide donor cohort. METHODS: We assessed self-reported QOL, fatigue and psychosocial issues after donation in 217 donors representing 63 % of those who donated 8-12 years ago. QOL was measured using the generic Short Form-36 Health Survey (SF-36), fatigue using the Multidimensional Fatigue Inventory (MFI) and psychosocial issues using donor specific questions. For each of the 8 domains of SF-36 and the 5 domains of MFI, we performed generalized linear regression. RESULTS: Donors scored high on QOL with mean scores between 63.9 and 91.4 (scale 1-100) for the 8 subscales. Recognition from family and friends was associated with higher QOL scores in four domains. There were no significant gender differences. Fatigue scores were generally low. Females generally scored higher than males on all five dimensions of fatigue, although significantly only on two. Recipient still alive was associated with lower scores on mental fatigue. Regretting donors scored higher than average on all domains of fatigue. Recipient death, worries about own health and worsened relationship with the recipient influenced willingness to donate in retrospect. Donor age did not affect long-term health outcomes. CONCLUSIONS: Eight till 12 years after donation QOL scores were generally high and improved with recogniton from family and friends. Fatigue was independent of donor age and more pronounced in females and in those who regretted donation.

Effects of controlled breathing exercises and respiratory muscle training in people with chronic obstructive pulmonary disease: results from evaluating the quality of evidence in systematic reviews.

BACKGROUND: This paper reviews evidence and quality of Systematic Reviews (SRs) on the effects of breathing control exercises (BCEs) and respiratory muscle training (RMT) on breathlessness/dyspnea and other symptoms, and quality of life (QOL) for individuals with chronic obstructive pulmonary disease (COPD). METHODS: A search for BCE and RMT literature in COPD published between January 1, 2002 and December 31, 2013 was performed in the following databases: PubMed, Ovid, CINAHL, PsycINFO, AMED, Cochrane and PEDro. The AMSTAR criteria were used to evaluate quality. RESULTS: After reviewing 642 reports, seven SRs were identified on RMT and BCEs. Three SRs were of high quality, three were of moderate quality, and one was of low quality. Two high-quality SRs reported significantly beneficial effects of RMT on dyspnea, and one reported significant effects on disease-specific QOL and fatigue. In these SRs, pooled data analyses were performed with three to fourteen single randomised control trials (RCTs) included in the analysis. In one of the SRs the quality of the single RCTs were rated by the authors to be between 5-7 (with10 best) and in the other one the quality of the single RCTs were rated to be between 30-83% of the maximum score.One high-quality SR found a significant positive effect of BCE based on pooled data analysis with two single RCTs in regard to pursed-lip breathing (PLB) on breathlessness. In this SR, one single RCT on diaphragmatic breathing (DB) and another one on yoga breathing (YB) showed effect on disease-specific QOL. The single RCTs included in the SR were rated by the authors in the SRs to be of low and moderate quality. CONCLUSIONS: Based on three high-quality SRs performing pooled data analyses, there is evidence that RMT has effect on breathlessness, fatigue and disease-specific QOL and PLB on breathlessness. There is also evidence that single studies on DB and YB has effect on disease-specific QOL. Few RCTs are available and the variable quality of the single RCTs in the SRs, seem to require more RCTs in particular for BCEs, but also RMT before conclusions regarding effects and high quality SRs can be written.

Illness perception in people with chronic obstructive pulmonary disease.

Illness perception (IP) concerns how patients evaluate living with a disease. To get a broader understanding of IP in patients with chronic obstructive pulmonary disease (COPD), we investigated whether breathlessness is an important precursor of IP and whether IP in its turn is related to mental health, physical health and global quality of life (QOL). One hundred and fifty-four patients with COPD participated in a cross-sectional survey. Participants underwent pulmonary function testing, provided socio-demographic and clinical information, and completed the following standardized instruments: Brief Illness Perception Questionnaire, Respiratory Quality of Life Questionnaire, Short-Form 12 Health Survey and the Quality of Life Scale. Multiple regression analyses were performed. A high IP score indicates that a patient believes that his/her illness represents a threat. Participants with a high score on the IP dimensions consequences, identity, concern and emotional representation, experienced more breathlessness. High scores on the IP dimensions consequences, identity and concern were associated with impaired physical health and high scores on the IP dimensions consequences, identity and emotional representation were associated with impaired mental health. Impaired global QOL was associated with high scores on the IP dimensions consequences, identity, concern, coherence and emotional representation. The strength of the associations between breathlessness and physical/mental health and global QOL decreased when certain dimensions of IP were included as predictors, indicating that IP to some extent acts as a mediating factor. These findings may have practical implications of patient counselling by helping COPD patients to cope with their disease by restructuring their personal models of illness.

Adolescent Cancer Survivors and Their Parents' Experiences With the Transition Off Treatment to Survivorship: A Qualitative Interview Study.

Background: Transitioning from active cancer treatment to survivorship represents a vulnerable yet underresearched phase for adolescents and their families. Knowledge of their support needs, the challenges they experience, and how they manage them are useful to inform tailored follow-up care. Thus, we aimed to explore their transition experiences. Method: We interviewed 15 adolescents (12-19 years) who had transitioned off of treatment 1 to 47 months prior at Oslo University Hospital's Department of Paediatric Haematology and Oncology and their biological parents (n = 16). The interviews were analyzed using inductive, reflexive thematic analysis inspired by Braun and Clarke. NVivo-12 was used for data management. Results: Four main themes were identified: (a) consequences of cancer beyond transition, (b) transition back to normalcy, (c) survivorship competence, and (d) changes in roles and relationships. The families described happiness and relief but also said that the lingering effects of cancer treatment had a profound impact on day-to-day living. The adolescents expressed closeness with and dependency on their parents, and they perceived family and friends as essential for social readjustment. Discussion: Although adolescent survivors and their parents described a wide variety of strategies for returning to "normalcy," their perspectives also illustrate ongoing psychosocial and educational support needs that changed over time. Our findings indicate a need for improved preparation for and support through the transition. Nurses are well positioned to provide continuous and structured transition support tailored to the needs of the individual survivors and their families.

Profiles of health literacy and digital health literacy in clusters of hospitalised patients: a single-centre, cross-sectional study.

OBJECTIVE: To investigate health literacy (HL) and digital health literacy (eHL) among patients hospitalised in surgical and medical wards using a cluster analysis approach. DESIGN: Cross-sectional study using Ward's hierarchical clustering method to measure cluster adequacy by evaluating distances between cluster centroids (a measure of cohesion). Different distances produced different cluster solutions. SETTING AND PARTICIPANTS: The study was conducted at a Norwegian university hospital. A total of 260 hospitalised patients were enrolled between 24 May and 6 June 2021. DATA COLLECTION: All data were collected by self-reported questionnaires. Data on HL and eHL were collected by the Health Literacy Questionnaire (HLQ) and the eHealth Literacy Questionnaire (eHLQ). We also collected data on background characteristics, health status and patient diagnosis. RESULTS: We found six HLQ clusters to be the best solution of the sample, identifying substantial diversity in HL strengths and challenges. Two clusters, representing 21% of the total sample, reported the lowest HLQ scores in eight of nine HLQ domains. Compared with the other clusters, these two contained the highest number of women, as well as the patients with the highest mean age, a low level of education and the lowest proportion of being employed. One of these clusters also represented patients with the lowest health status score. We identified six eHL clusters, two of which represented 31% of the total sample with the lowest eHLQ scores in five of seven eHLQ domains, with background characteristics comparable to patients in the low-scoring HLQ clusters. CONCLUSIONS: This study provides new, nuanced knowledge about HL and eHL profiles in different clusters of patients hospitalised in surgical and medical wards. With such data, healthcare professionals can take into account vulnerable patients' HL needs and tailor information and communication accordingly.

Comparison of health-related quality of life between patients with chronic obstructive pulmonary disease and the general population.

BACKGROUND: Chronic obstructive pulmonary disease (COPD) is associated with lower health-related quality of life (HRQOL). Previous research has focused primarily on HRQOL in these patients, whereas few studies have compared HRQOL between patients with COPD and the general population. AIM: The aim of this study was to evaluate differences in HRQOL between patients with COPD stage 2 to COPD stage 4 waiting to begin an outpatient pulmonary rehabilitation (PR) programme and Norwegian individuals with and without other chronic conditions. METHODS: A comparative survey design was used in this study of 100 patients with COPD waiting to begin PR and 3594 individuals from the general population. The SF-36 questionnaire was used to evaluate HRQOL. RESULTS: Compared with the healthy general population, COPD patients waiting to begin PR had lower scores on all SF-36 components and on the physical and mental health summary components (p < 0.001). Scores for physical function, physical role, general health, vitality, social function, emotional role and the physical health component differed markedly between patients and the general population. Patients with COPD stage 4 had lower HRQOL than did the general population and those with COPD stage 2 and COPD stage 3. CONCLUSIONS: The burden of COPD significantly affects HRQOL in patients with COPD waiting to begin PR, and those with COPD stage 4 are most affected. Action should be taken to support especially those patients with COPD stage 4.

Anxiety and depression following pulmonary rehabilitation.

AIM: The aim of this study was to evaluate changes and predictive factors of anxiety and depression in patients with chronic obstructive pulmonary disease (COPD) before and up to 3 months after pulmonary rehabilitation (PR). METHODS: A single group longitudinal design of patients with COPD underwent a PR programme. The measurements took place at baseline (T1: N=100), immediately before (T2: N=66), immediately after (T3: N=54) and 3 months after (T4: N=43) the programme. The programme was a 6-week outpatient programme, including education, psychosocial support and training sessions. Anxiety and depression were measured by the Hospital Anxiety and Depression Scale, self-efficacy by the COPD self-efficacy scale, lung function by spirometry and exercise capacity by incremental shuttle walking test. Mixed effect model analyses were used. RESULTS: Results showed a tendency of less anxiety and depression immediately after (T3) compared with immediately before (T2) the PR programme, but the changes were not significant. Results also showed that female reported significantly more anxiety than male (p=0.019), better exercise capacity predicted significantly less depression (p=0.049), and higher self-efficacy predicted both significantly less anxiety (p=0.001) and less depression (p=0.005). CONCLUSIONS: A tendency of less anxiety and depression during the PR programme was found, but the changes were not significant. Higher level of self-efficacy and better exercise capacity are suggested to relieve anxiety and depression.

[Do previous abortions cause fear of childbirth?]. / Gir tidligere aborter fødselsangst?

BACKGROUND: Abortion is a matter that concerns many women, and we have little knowledge about the effects of such experiences with regard to later pregnancies. The objective of the study was to investigate whether a previous history of abortion has an effect on later development of fear of childbirth, adjusted for the woman's mental health, parity, previous stillbirths and socio-demographic factors. MATERIAL AND METHODS: The study included 2,753 pregnant women from Akershus University Hospital. Information was collected with the aid of questionnaires in the 18th and 32nd week of gestation, as well as retrievals from the hospital's system of birth records. Fear of childbirth was measured on the Wijma scale (W-DEQ). RESULTS: The prevalence of fear of childbirth (defined as W-DEQ ≥ 85) amounted to 11.7% among women who had undertaken two or more elective abortions and 7.8% among those who had no previous abortions. This trend was not statistically significant and disappeared completely in the adjusted analyses. Nor did we find any correlation between spontaneous abortions and fear of childbirth. The mental health of the woman was the one factor that was most strongly associated with fear of childbirth, an association that we have found also on a previous occasion in analyses of a smaller proportion of this cohort. INTERPRETATION: We found no co-variance between previous abortion history and fear of childbirth.

Quality of life following liver transplantation in patients with liver metastases from colorectal carcinoma.

PURPOSE: To study quality of life (QoL) in patients with liver metastases from colorectal carcinoma (CRC) following liver transplantation (Ltx). METHODS: Ten patients participated in a prospective explorative pilot study. Inclusion criteria were nonresectable liver-only metastases determined by CT/MRI-, PET/CT- scans and colonoscopy, and ECOG 0-1. Primary outcome was QoL assessed by the EORTC-C30 questionnaires at baseline, and at 3, 6 and 12 months after Ltx. RESULTS: The patients' age ranged from 50 to 63 years. Nine of 10 patients were observed for 12 months. One patient did not return the form at 6 months and died shortly after because of recurrence of the malignant disease. Compared to baseline, Ltx resulted in sustained excellent global health status scale (score of 100) in one patient, improved scores in 4 and unchanged scores in 3 patients at 12 months. The majority of the patients also reported good functional scores at follow-ups. Although two patients had marked symptoms both before and after Ltx, the patients in general reported low levels of pain and fatigue before and after surgery. CONCLUSION: The present study indicates that CRC patients with liver-only metastases who receive Ltx have good QoL and have mostly minor symptoms the first year after Ltx.