"A bit of everything": Health literacy interventions in chronic conditions - a systematic review.

OBJECTIVE: To systematically evaluate health literacy (HL) interventions in chronic conditions by exploring theoretical perspectives, intervention content and effectiveness. METHOD: We searched MEDLINE, Cochrane, CINAHL, EMBASE, ERIC, Web of Science and PsycINFO. Standardised systematic review methods were used, and sequences informing our research question were extracted and analysed. The study includes a descriptive summary of the included papers. RESULTS: We included 39 unique interventions, with diabetes and heart disease as the most targeted chronic conditions. Fifty-four percent of papers included a definition of HL, but the studies showed significant heterogeneity of theoretical underpinnings, modes, measures and content. We identified 23 HL measures, mostly assessing functional HL. The HL interventions were often more complex than the measures indicated. A significant change in HL was found in 28 studies. Study quality was generally poor. CONCLUSIONS: Interventions optimizing HL appear important to improve health outcomes in chronic conditions. To ensure cumulative knowledge development of this field we need theory-based interventions, consistency in methods and more tailored and comprehensive measures to capture the interventions' complexity. PRACTICE IMPLICATIONS: A more valid understanding of HL interventions and measurements is needed to reach an agreed understanding of their components and intentions.

The importance of shared meaning-making for sustainable knowledge translation and health literacy.

The aim of the present paper is to describe and discuss how recent theories about translation, bridging medical and humanistic understandings of knowledge translation, in the medical humanities can bring about a new understanding of health literacy in the context of patient education. We argue that knowledge translation must be understood as active engagement with contextual meaning, considering the understandings, interpretation, and expertise of both patient and health care provider (deconstruction of the distinction between biomedical and cultural knowledge). To illustrate our points, we will describe the case of Jim, a kidney transplant recipient who received standard patient education but lost the graft (the new kidney). If we apply Kristeva's view to this context, graft function is not merely biology but a complex biocultural fact. In this perspective, graft function is seen as a phenomenon that embraces translation between health as a biomedical phenomenon and healing as lived experience, and that opens for shared meaning-making processes between the patient and the health care provider. In Jim's case, this means that we need to rethink the approach to patient education in a way that encourages the patient's idiosyncratic way of thinking and experiencing, and to transform health information into a means for sustaining Jim's singular life - not biological life "in general." The patient education programme did not take into consideration the singularities of Jim's biographical temporality, with its changes in everyday life, priorities, attitudes, and values. Hence, we claim that health literacy should involve a simultaneous interrogation of the patients and the health professional's constructions of knowledge.

Relevant associations between alexithymia and health-literacy in persons with psoriasis.

OBJECTIVE: To explore possible associations between alexithymia and health literacy (HL) in persons with psoriasis. METHODS: We conducted a cross-sectional study, including 825 persons with moderate to severe psoriasis, using the Toronto Alexithymia Scale, and the Health Literacy Questionnaire. Descriptive statistics compare HL means between alexithymic and not alexithymic participants. Associations between alexithymia and HL are analyzed using a linear multiple regression model. RESULTS: Twenty-six percent of the participants were characterized as alexithymic, and 26.8% had borderline alexithymia. Higher alexithymia scores were associated with lower education, biological medicines, and more comorbidities, together with lower self-efficacy. The HL domains with the strongest associations with alexithymia were those focusing on managing and getting support for health, as well as the ability to find health information. CONCLUSION: A more elevated alexithymia score is associated with lower HL. Further studies of these associations may contribute to a more comprehensive perspective of psoriasis. To know a patient's alexithymia level and HL needs may guide health care personnel's understanding of possible associations between health status, clinical presentation, behavior, and response to treatment.

Exploring patients' and health professionals' perspectives on health literacy needs in the context of chronic obstructive pulmonary disease.

OBJECTIVE: Persons with chronic obstructive pulmonary disease (COPD) require complex follow-up by healthcare professionals (HCPs) and may experience several health literacy (HL) needs. This study aimed to explore such needs in people with COPD and the HCPs who care for them. METHODS: From October 2016 to August 2017 a qualitative study with four focus groups (FG) were performed in people with COPD (n = 14) and three in multidisciplinary HCPs (n = 21). An inductive thematic analysis was used to investigate HL needs. RESULTS: Four HL needs emerged: 1) strengthening the feeling of security; 2) combating the burden of insufficient knowledge on COPD and lack of informational flow; 3) supporting motivation for endurance and self-management; and 4) strengthening dignity. DISCUSSION: This study highlights a gap between people with COPD who express important HL needs and HCPs' capabilities to care for these needs. For HCPs to increase HL in such cases, HCPs need to improve their own HL. It is essential to find solutions on how to improve HL in HCPs who care for people with COPD and to increase the availability of interventions that increase HL in COPD. Education programs, health organizations, and governments should be aware of HL needs in such situations.

Intervening on health literacy by knowledge translation processes in kidney transplantation: A feasibility study.

BACKGROUND: Patients awaiting kidney transplantation need to be prepared ahead of the upcoming transplantation by developing targeted pre- and post-transplant knowledge. On this background, we designed a new health literacy intervention, including a film and a counselling session, based on motivational interviewing for dialysis patients provided by dialysis nurses. AIM: To explore patients' and nurses' experiences of the feasibility and acceptability of the intervention, focusing on the patient as a prepared knowledge actor. DESIGN: An explorative qualitative study. PARTICIPANTS AND METHODS: Data included in-depth interviews with nine patients and three nurses who participated in the intervention. The interviews were audiotaped and analysed following Kvale and Brinkmann's method for thematic data analysis. FINDINGS: Three main themes were identified: a different kind of health intervention stimulating new insight; a challenging kind of health conversation and changed relationships and increased security. CONCLUSIONS: Both the patients and the nurses had an overall positive attitude toward the intervention, providing a kind of dialogue to prepare dialysis patients going through kidney transplantation. The nurses found the MI methodology to be challenging. When introducing a comprehensive communication method like MI, potential training and supervision needs for the nurses must be addressed.

Exploring health literacy needs in Chronic obstructive pulmonary disease (COPD): Associations between demographic, clinical variables, psychological well-being and health literacy.

BACKGROUND: The World Health Organization (WHO) points to health literacy as an important factor in prevention and control of non-communicable diseases (NCDs), including COPD. OBJECTIVE: To investigate associations between selected demographic and clinical variables, psychological well-being and health literacy. METHODS: Health literacy was measured using the nine domain Health Literacy Questionnaire (HLQ) and one domain from the eHealth Literacy Questionnaire (eHLQ). Using data from a cross-sectional sample of 158 people with COPD, recruited from a hospital-based patient list period (2014-2016), multiple regression analyses were performed. RESULTS: The strongest associated variables with health literacy were psychological well-being, measured by the WHO-5 well-being index and education, indicating that higher psychological well-being and educational level are associated with higher levels of health literacy. CONCLUSION: The present study highlights the importance of specifically looking to psychological factors in determining potentially health literacy needs among people with COPD.

Reaching adulthood with Hirschsprung's disease: Patient experiences and recommendations for transitional care.

BACKGROUND/PURPOSE: The need for transitional care has gained increased focus in the treatment of patients with congenital colorectal disorders. We aimed to acquire in-depth knowledge about the experiences of adult patients with Hirschsprung's disease (HD) and their suggestions for transitional care. METHODS: Binational study applying gender equal focus group interviews (FGI). RESULTS: Seventeen (9 men) of 52 invited patients with median age 29 (19-43) years participated. Three themes evolved from the FGI. "Scarred body and soul" describes the somatic and psychosocial challenges the patients experienced and "limited health literacy on HD" refers to the patients' lack of HD knowledge. "Absent transition" depicts missing transitional care and the patients' inability to find adult HD specialists. The adult HD patients strongly recommended transitional care from early teens with focus on information about HD and establishment of a peer-to-peer program. They also emphasized the possibility of being referred to a pelvic floor center. CONCLUSIONS: HD negatively influences patients' somatic and psychosocial health in childhood, adolescence and adulthood. Adult HD patients strongly recommend transitional care from early teens and the possibility for referral to a center working with pelvic floor dysfunctions. LEVEL OF EVIDENCE: IV TYPE OF RESEARCH: Clinical.

Health-related quality of life in women with endometriosis, compared with the general population and women with rheumatoid arthritis.

INTRODUCTION: Women with endometriosis have reduced health-related quality of life (HRQoL). However, comparisons to the general population and other patient groups are lacking. MATERIAL AND METHODS: The present cross-sectional questionnaire study included 157 women with endometriosis, 156 women from the general population, and 837 women with rheumatoid arthritis (RA). During a period from 2012 to 2013, women aged 18-45 years were recruited from the Norwegian Endometriosis Association and from a random sample of women residing in Oslo, Norway. HRQoL data from women with RA were included from a survey conducted in 2009 among patients of the Oslo Rheumatoid Arthritis Register. The Short Form-36 (SF-36) questionnaire was used to measure HRQoL. RESULTS: Compared with the control group, the endometriosis group had significantly reduced mean scores for all SF-36 scales. The difference was largest for the scale bodily pain with a mean score of 47.6 in the endometriosis group vs 81.5 in the control group. Compared with the RA group, the endometriosis group had significantly reduced mean scores for the three SF-36 scales vitality, social functioning, and mental health. The mean scores of these scales in the endometriosis group were 33.4, 62.7, and 66.3, respectively, vs 42.7, 68.8, and 72.6 in the RA group. CONCLUSIONS: Women with moderate to severe endometriosis seem to have overall impaired HRQoL compared with women from the general population, and poorer mental HRQoL compared with women with RA.

Implementation of a new patient education programme for renal transplant recipients.

BACKGROUND: Nurses' strategies regarding patient education should be informed by the best available research evidence. Clinical nurses play an essential role in implementing new patient education programmes for renal transplant recipients. AIM: This study investigated transplant nurse job satisfaction, competence, training and perceptions of quality of care in relation to the implementation of a new, evidence-based, patient education programme. This paper reports the results from the first part of an implementation study. METHODS: Data were collected in the form of a survey from 50 clinical transplant nurses at a single national transplant centre in Norway in 2015, six months after the patient education programme was implemented. A descriptive, cross-sectional design was used. RESULTS: Seventy-two percent of the respondents reported that they had sufficient knowledge about the new programme; 54.4 % stated that the new programme resulted in renal transplant recipients being better educated. The new programme was found to be more structured, patient-centered and visible for the nurses across the wards, as compared with their previous practice. Nurses with less nursing experience were significantly more motivated about the new patient education programme, than the more experienced nurses (p = 0.05). CONCLUSIONS: Nurses were generally satisfied with their new patient education practice. Knowledge derived from the research evidence on patient education was found to be valuable and transferable to everyday clinical nursing practice.

Changes in health-related quality of life in older candidates waiting for kidney transplantation.

AIM: There is limited available knowledge regarding health-related quality of life (HRQoL) in older patients with chronic kidney disease. We aimed to describe HRQoL in renal transplant candidates 65 years or older at transplant acceptance, and during the first year on the waiting list. METHODS: A nationwide prospective observational study in Norway was conducted. HRQoL was evaluated at baseline (wait listing) and after 6 and 12 months using the patient self-reported Kidney Disease and Quality of Life Short form version 1.3. Intra-individual scores at different times were evaluated. Generic HRQoL was compared with scores from an age-matched Norwegian population. RESULTS: From January 2013 to November 2016, 261 patients ≥65 years accepted for deceased donor kidney transplantation were included. Mean age at inclusion was 71.1 years, 67% male and 69% were on dialysis. HRQoL sum scores significantly decreased during the first year on the waiting list. Physical, mental and kidney disease component summary score reduced from 39.6 to 38.1 (P = 0.045), 48.8 to 44.7 (P < 0.001) and 72.1 to 70.2 (P = 0.03), respectively. When evaluating each domain separately, only the decrease in social function was clinically significant. Age and being on dialysis were the most important predictors for low HRQoL. Compared to the age-matched general population, males had significant lower HRQoL scores. Females were comparable to the general female population at baseline except in general health and vitality. CONCLUSIONS: HRQoL in older patients waiting for kidney transplantation decreases during the first year on the waiting list, but only the change in social function is clinically significant.

Relationships Between Clinical, Self-Reported, and Donation Specific Outcomes: A Prospective Follow-up Study 10 Years After Kidney Donation.

BACKGROUND Long-term consequences of donor nephrectomy might be reduced kidney function, increased risk for cardiovascular disease, impaired quality of life, and fatigue. Few studies have investigated associations between clinical and self-reported outcomes in a long-term perspective. Thus, we aimed to investigate relationships between clinical, self-reported, and donation-specific outcomes in a nationwide cohort. MATERIAL AND METHODS We conducted a prospective follow-up study and assessed pre- and post-donation data from 202 donors who donated in 2001-2004. During 2012-2013, data on donors' self-reported (quality of life and fatigue) and donor-specific outcomes were collected. We performed linear regression for each component score of the generic instrument Short-Form, SF36v2, measuring quality of life, and the 5 domains of fatigue. Clinical parameters tested as independent variables were medical treatment of hyperlipidemia or hypertension, current smoking status, BMI, hemoglobin, and eGFR. Data were adjusted for age and gender. RESULTS Approximately 10 years after donation, 67 donors were hypertensive and 54 donors had eGFR <60 ml/min/1.73 m². Mean increase in plasma creatinine was 16.6 µmol/l (SD=16.3). None of the clinical parameters were significant predictors for QoL. Female gender was significantly associated with general fatigue. There was a significant difference in perception of recognition from health personnel between donors with hypertension and donors without hypertension. CONCLUSIONS Our results show no associations between clinical and self-reported outcomes. However, we found a significant relationship between hypertension and donation-specific outcomes. Hypertension or reduced kidney function was identified in a minority of the donors. The increased risk for fatigue among female donors needs more investigation.

Limited evidence for the effectiveness of educational interventions for renal transplant recipients. Results from a systematic review of controlled clinical trials.

OBJECTIVE: To describe the content and evaluate the effectiveness of patient education programs for renal recipients. METHODS: Randomized controlled trials (RCTs) and controlled clinical trials (CCTs) were identified through systematic literature searches in the Cochrane Central Register of Controlled Trials, Medline, Embase, CINAH, and ERIC. Reference lists and reviews were also examined. Methodological quality was evaluated according to criteria developed by the Cochrane Musculoskeletal Group. Interventional effects were summarized qualitatively. RESULTS: Nine trials were included, and three were RCT's. The educational interventions varied regarding focus, timing and intensity. No studies were assessed to have low risk of bias. Only two studies, which had a moderate risk of bias, reported beneficial effects in favor of the educational interventions. The strongest evidence was found for the use of preparatory video-assisted teaching prior to discharge and monthly pharmaceutical counseling. CONCLUSION: Few included studies with moderate to high risk of bias suggest limited evidence for the effects of educational interventions for renal recipients. PRACTICE IMPLICATIONS: Studies with stronger designs and improved reporting standards are needed. Future educational interventions should include a holistic educational approach and be provided in both early and later stages post transplantation. Furthermore, additional long-term outcome measures are needed.

The effect of an educational intervention for renal recipients: a randomized controlled trial.

AIM: The purpose of this randomized controlled trial was to test the efficacy of an educational intervention on renal recipient's knowledge, compliance, self-efficacy, and quality of life. METHODS: In total, 159 renal recipients were randomized to the intervention (N = 77) or control group (N = 82). A total of 139 participants reached second measure point (7-8 wk post-Tx), and 120 participants reached third measure point (six months post-Tx). The intervention consisted of five tailored one-to-one sessions. Primary outcome was measured by a knowledge questionnaire. Secondary outcomes were measured by "The General- Self-efficacy Scale," SF-12 and by number of patient observations (Compliance). RESULTS: Significantly higher levels of knowledge were found in the experimental group compared with the control group at both measure points (p = 0.002 and p = 0.004). Compliance was significantly higher in the experimental group at second measure point (p = 0.000). At third measure point, the experimental group reported significantly better scores on self-efficacy (p = 0.036) and mental score of quality of life (p = 0.001). CONCLUSIONS: This structured, tailored educational intervention, applied in a 7-8 wk post-transplant period, increased renal recipients' levels of knowledge on both short and long terms. Furthermore, the intervention was beneficial for patients' compliance, self-efficacy, and mental quality of life.

Renal recipients' educational experiences in the early post-operative phase--a qualitative study.

Renal recipients need to acquire significant amount of knowledge for their life post-transplantation. More knowledge on kidney recipients' experiences after transplantation with regard to the patient education provided is needed. Sixteen renal recipients were interviewed 4-6 weeks post-transplantation about content and methods in the patient education programme. Data were analysed in the hermeneutic tradition. The patients experienced barriers towards learning in the early post-operative phase. Kidney transplantation was expressed as a 'turning point in life', causing learning difficulties because of both physical and mental stress. Survival knowledge was the label for topics concerning medication and rejection as they were experienced as essential for life. Situational knowledge, that is, knowledge related to recipients' individual life situations, requires further details in the main topics provided. The difference between knowing and practising what was taught was experienced as troublesome. The recipients expressed that a supportive learning atmosphere characterized by patience, respect, continuity and active participation was essential. This study revealed new knowledge about renal recipients' need for individual application of the educational content, as well as cognitive difficulties, and other factors impacting on learning in the early post-operative phase. The patients' perspective is an important and useful aid in creating effective interventions in this field.

Patients' level of knowledge measured five days after kidney transplantation.

BACKGROUND: Kidney recipients' knowledge is important in terms of coping with short-term problems posed by transplantation and the long-term outcome. Little attention has been given to the development of instruments for measuring patient's knowledge in this field. AIM: The purpose of this study was to describe the development of a knowledge questionnaire for kidney recipients and to explore possible factors related to the knowledge level. METHODS: The sample consisted of 159 kidney recipients at a Norwegian transplant center, answering the questionnaire five d post-transplantation. RESULTS: The questionnaire was generated on the basis of literature review and clinical experience - and was pilot tested. Mean score of the questionnaire was 11, of 19 obtainable points. Longer duration of kidney disease was significantly correlated with an increased knowledge level, whereas the longer the time on dialysis prior to transplantation and post-operative complications were found to have significantly negative impact on total knowledge score. CONCLUSIONS: The positive impact of disease duration may suggest that insight gained over time makes patients better prepared for the transplantation itself and for life post-transplant. However, the negative impact of dialysis duration could be attributed to impaired cognitive function imposed by chronic dialysis treatment. Further research is needed regarding the questionnaire's responsiveness to educational interventions.

Quality of life can both influence and be an outcome of general health perceptions after heart surgery.

BACKGROUND: Our aim was to investigate the existence of a reciprocal relationship between patients' assessment of quality of life and their appraisal of health. If present, this relationship will interfere with the interpretation of heart surgery's effect on overall quality of life. METHODS: Path analysis was used to investigate reciprocal causal relationships between general health perceptions and overall quality of life before and after heart surgery. Longitudinal data from a study of coronary artery bypass surgery were used to model lagged, cross-lagged, and simultaneous paths over four time-points of assessment from before surgery to one year afterwards. The conceptual framework for the analysis was the Wilson and Cleary causal pathway model. General health perceptions were measured with the Short Form 36. Overall quality of life was measured with i) a single question regarding life satisfaction and ii) the multi-item Quality of Life Survey. RESULTS: Acceptable model fit was obtained for reciprocal causation between general health perceptions and overall quality of life. Regression coefficients changed over different phases of rehabilitation. Serial correlation accounted for much of the variance within variables over time. CONCLUSION: The present analysis demonstrates that unidirectional models of causality are inadequate to explain the effect of heart surgery on overall quality of life. Overall quality of life can causally influence as well as be an outcome of health status after coronary artery bypass surgery.

Patient-reported outcome after randomization to on-pump versus off-pump coronary artery surgery.

BACKGROUND: Clinical experience with off-pump coronary artery bypass surgery raises the question of a patient experienced benefit compared with on-pump surgery. This prospective and randomized study compared patient-reported outcome between surgical groups, as change scores at 3 months after surgery and longitudinally as time-averaged change from baseline through the first year after surgery. METHODS: In all, 120 patients were randomly assigned to on- or off-pump coronary artery surgery. A questionnaire for patient self-report of angina (Canadian Cardiovascular Society scale), health status (Short Form 36, sleep and sexual difficulty), and overall quality of life (Quality of Life Scale) was administered at baseline and at 3, 6, and 12 months after surgery. RESULTS: Patient groups were comparable with regard to age, symptoms, comorbidity, and surgical characteristics. Both groups experienced a median of two classes relief of angina at 3 months (p < 0.0005), maintained throughout follow-up. Paired t tests revealed significant improvement on all Short Form 36 subscales at 3 months after surgery, with the exception of physical role functioning in the on-pump group. No independent main effects of surgical group were observed in the between-groups covariance models. The longitudinal effect of sex was significant in four Short Form 36 subscales: physical functioning, bodily pain, and role limitation due to physical or emotional problems. Overall quality of life scores were stable in both groups. CONCLUSIONS: Both on-pump and off-pump patients reported less angina and improved health status after surgery. There were no significant differences between surgical groups in health status or overall quality of life, neither cross-sectionally nor longitudinally.