Identification of health-related problems in youth: a mixed methods feasibility study evaluating the Youth Health Report System.

BACKGROUND: Because poor health in youth risk affecting their entry in adulthood, improved methods for their early identification are needed. Health and welfare technology is widely accepted by youth populations, presenting a potential method for identifying their health problems. However, healthcare technology must be evidence-based. Specifically, feasibility studies contribute valuable information prior to more complex effects-based research. The current study assessed the process, resource, management, and scientific feasibility of the Youth Health Report System prototype, developed within a youth health clinic context in advance of an intervention study. METHODS: This mixed-methods feasibility study was conducted in a clinical setting. The process, resource, management, and scientific feasibility of the Youth Health Report System were investigated, as recommended in the literature. Participants were youth aged 16-23 years old, attending a youth health clinic, and healthcare professionals from three clinics. The youth participants used their smart phones to respond to Youth Health Report System health questions and healthcare professionals used their computer to access the results and for registration system entries. Qualitative data were collected from interviews with healthcare professionals, which were described with thematic analysis. Youth participants' quantitative Youth Health Report System data were analyzed for descriptive statistics. RESULTS: Feasibility analysis of qualitative data from interviews with 11 healthcare professionals resulted in three themes: We expected it could be hard; Information and routines helped but time was an issue; and The electronic case report form was valuable in the health assessment. Qualitative data were collected from the Youth Health Report System. A total of 54 youth participants completed the evaluation questionnaire, and healthcare professionals retrieved information from, and made post-appointment system entries. Quantitative results revealed few missing items and acceptable data variability. An assessment template of merged qualitative and quantitative data guided a consensus discussion among the researchers, resulting in acceptable feasibility. CONCLUSIONS: The process-, resource-, management-, and scientific feasibility aspects were acceptable, with some modifications, strengthening the potential for a successful Youth Health Report System intervention study.

Development and usability evaluation of an electronic health report form to assess health in young people: a mixed-methods approach.

BACKGROUND: Electronic Patient-Reported Outcomes (ePROs) have potential to improve health outcomes and healthcare. The development of health-technology applications, such as ePROs, should include the potential users and be theoretically grounded. Swedish Youth Health Clinics (YHCs) offer primarily sexual and psychological healthcare for young people aged 12 to 25 years old. Young people in healthcare settings are considered a vulnerable group. The development of a collection of Patient-Reported Outcomes (PROs) in an Electronic Health Report Form (eHRF) for identifying health and health-related problems in young people, was preceded by a qualitative interview study, exploring young people's views on using an eHRF at YHCs and which questions about health an eHRF should contain. The aim of the current study was to develop and evaluate the usability of an eHRF prototype for identifying health and health-related problems in young people visiting YHCs. METHODS: This study used a participatory design. During the development, an expert panel consisting of eight researchers and one Information Technology worker, participated. A wide literature search was performed to find PROs to construct an eHRF prototype to cover health areas. A mixed methods usability evaluation included 14 participants (young people, healthcare professionals, and an expert panel). RESULTS: The development resulted in an eHRF prototype, containing ten reliable and valid health questionnaires addressing mental-, physical-, and sexual health and social support, a self-efficacy question, and background questions, in total 74 items. The interviews in the usability evaluation resulted in three categories describing the usability of the eHRF: 'Captures the overall health of young people but needs clarification', 'Fun, easy, and optional and will keep young people's interest', and 'Potential contribution to improve the health consultation'. The quantitative results support the usability of the eHRF for YHCs. CONCLUSIONS: The participatory approach contributed to development of the eHRF prototype to cover health areas adapted for the target population. The usability evaluation showed that the eHRF was usable and had the potential for self-reflection and contributions to cooperation between young people and healthcare professionals during the health consultation.

Resource allocation and organisational features in Swedish primary diabetes care: Changes from 2006 to 2013.

AIMS: To compare the resource allocation and organisational features in Swedish primary diabetes care for patients with type 2 diabetes mellitus (T2DM) between 2006 and 2013. METHODS: Using a repeated cross-sectional study design, questionnaires covering personnel resources and organisational features for patients with T2DM in 2006 and 2013 were sent to all Swedish primary health care centres (PHCCs) during the following year. In total, 684 (74.3%) PHCCs responded in 2006 and 880 (76.4%) in 2013. RESULTS: Compared with 2006, the median list size had decreased in 2013 (p<0.001), whereas the median number of listed patients with T2DM had increased (p<0.001). Time devoted to patients with T2DM and diabetes-specific education levels for registered nurses (RNs) had increased, and more PHCCs had in-house psychologists (all p<0.001). The use of follow-up systems and medical check-ups had increased (all p<0.05). Individual counselling was more often based on patients' needs, while arrangement of group-based education remained low. Patient participation in setting treatment targets mainly remained low. CONCLUSIONS: Even though the diabetes-specific educational level among RNs increased, the arrangement of group-based education and patient participation in setting treatment targets remained low. These results are of concern and should be prioritised as key features in the care of patients with T2DM.

Informal Caregivers' Experiences and Needs When Caring for a Relative With Heart Failure: An Interview Study.

BACKGROUND: Informal caregivers play an important role for persons with heart failure in strengthening medication adherence, encouraging self-care, and identifying deterioration in health status. Caring for a relative with heart failure can affect informal caregivers' well-being and cause caregiver burden. OBJECTIVE: The objective of this study was to explore informal caregivers' experiences and needs when caring for a relative with heart failure living in their own home. METHODS: The study has a qualitative design with an inductive approach. Interviews were conducted with 14 informal caregivers. Data were analyzed using qualitative content analysis. RESULTS: Two themes emerged: "living in a changed existence" and "struggling and sharing with healthcare." The first theme describes informal caregivers' experiences, needs, and ways of moving forward when living in a changed existence with their relative. Informal caregivers were responsible for the functioning of everyday life, which challenged earlier established roles and lifestyle. They experienced an ever-present uncertainty related to the relative's impending sudden deterioration and to lack of knowledge about the condition. Incongruence was expressed between their own and their relative's understanding and acceptance of the heart failure condition. They also expressed being at peace with their relative and managed to restore new strength and motivation to care. The second theme describes informal caregivers' experiences, needs, and ways in which they handled the healthcare. They felt counted upon but not accounted for, as their care was taken for granted while their need to be seen and acknowledged by healthcare professionals was not met. Informal caregivers experienced an ever-present uncertainty regarding their lack of involvement with healthcare. The lack of involvement with healthcare had a negative impact on the relationship between informal caregivers and their relative due to the mutual loss of important information about changes in medication regimens and the relative's symptoms and well-being. Another cause of negative impact was the lack of opportunity to talk with healthcare professionals about the emotional and relational consequences of heart failure. Healthcare professionals had provided them neither with knowledge on heart failure nor with information on support groups in the municipality. Informal caregivers captured their own mandate through acting as deputies for their relative and claiming their rights of involvement in their relative's healthcare. They also felt confident despite difficult circumstances. The direct access to the medical clinic was a source of relief and they appreciated the contacts with the registered nurses specialized in heart failure. Informal caregivers' own initiatives to participate in meetings were positively received by healthcare professionals. CONCLUSIONS: Informal caregivers' daily life involves decisive changes that are experienced as burdensome. They handled their new situations using different strategies to preserve a sense of "self" and of "us." Informal caregivers express a need for more involvement with healthcare professionals, which may facilitate informal caregivers' situation and improve the dyadic congruence in the relation with their relative.

Nutritional status predicts preterm death in older people: a prospective cohort study.

BACKGROUND & AIMS: There is an association between malnutrition and mortality. However, it is uncertain whether this association is independent of confounders. The aim of the present study was to examine whether nutritional status, defined according to the three categories in the full Mini Nutritional Assessment (MNA) instrument, is an independent predictor of preterm death in people 65 years and older. METHODS: This prospective cohort study included individuals aged ≥65 years who were admitted to hospital between March 2008 and May 2009 and followed-up after 50 months (n = 1767). Nutritional status was assessed with the MNA, and possible risk factors associated with malnutrition were recorded during participants hospital stay. Main outcome measure was overall survival. RESULTS: Based on the MNA definitions, 628 (35.5%) were well-nourished, 973 (55.1%) were at risk of malnutrition, and 166 (9.4%) of the participants were malnourished at baseline. During the follow-up period 655 (37.1%) participants died. At follow-up, the survival rates were 75.2% for well-nourished participants, 60.0% for those at risk of malnutrition, and 33.7% for malnourished participants (p < 0.001). After adjusting for confounders the hazard ratios (95% CI) for all-cause mortality were 1.56 (1.18-2.07) in the group at risk of malnutrition and 3.71 (2.28-6.04) in the malnourished group. CONCLUSIONS: Nutritional status defined according to the three categories in the full MNA independently predicts preterm death in people aged 65 years and older. These findings are clinically important and emphasise the usefulness of the MNA for screening of nutritional status.

Reporting systems, reporting rates and completeness of data reported from primary healthcare to a Swedish quality register--the National Diabetes Register.

OBJECTIVE: The aims of this paper were to study the reporting rate and completeness of data reported from primary healthcare centres (PHCCs) in Sweden to the Swedish National Diabetes Register (NDR), with a special attention on the relation between these measures and the reporting system used by the PHCCs. METHOD: A national survey conducted in Swedish primary healthcare covering the year 2006. A questionnaire was used to collect data from 523 PHCCs. Data on 87,099 adult diabetic patients attending these PHCCs and reported to the NDR were obtained from the register. In Sweden, participation in the NDR is voluntary. The data were reported through the Internet, either online using a web-based system or by direct transmission. The main outcome measures were reporting rate and completeness of reported data. RESULTS: Of the 523 PHCCs, almost two-thirds had reported <75% of their diabetic patients to the NDR. The lowest reporting rate was found among the largest PHCCs, while the highest was found among small PHCCs (p<0.001). Reasons given for not reporting data to the NDR were lack of time and lack of personnel resources. Altogether, 73.1% of the PHCCs reported data to the NDR online using a web-based system, 20.5% used direct transmission and 6.3% used both systems. The PHCCs that reported data through direct transmission systems reported almost 70% of their diabetic patients to the NDR, while PHCCs using web-based systems reported 54% of their diabetic patients to the NDR. Adjusted for other factors, using direct transmission increased the reporting rate by 13.0 percentage points. However, the web-based system contributed to a higher completeness of data than the direct transmission system. CONCLUSIONS: A direct transmission system facilitates a high reporting rate to the register at the expense of lower completeness of the reported data.

The Swedish National Survey of the Quality and Organization of Diabetes Care in Primary Healthcare--Swed-QOP.

AIM: To describe the quality and organization of diabetes care in primary healthcare in Sweden regarding resources and ways of working. METHOD: A questionnaire was used to collect data from all 921 primary healthcare centres (PHCCs) in Sweden. Of these, 74.3% (n=684) responded to the questionnaire covering list size of the PHCCs, number of diabetic patients, personnel resources and ways of working. RESULTS: The median list size reported from the PHCCs was 9,000 patients, 294 of whom were diabetic patients. The majority (72%) of PHCCs had diabetes-responsible general practitioners (GPs) and almost all (97%) had diabetes specialist nurses (DSNs) with some degree of postgraduate education in diabetes. The PHCCs reported that they used regional/local diabetes guidelines (93%), were engaged in call-recall diabetic reviews by GP(s) (66%) and DSN(s) (89%), checked that patients had participated in the reviews by GP(s) (69%) and DSN(s) (78%), arranged group education programmes (23%) and reported data to a National Diabetes Register (82%). CONCLUSIONS: The presence of diabetes-responsible GP(s) and DSN(s) who use guidelines may contribute to good and equal quality of care. It is, however, necessary to improve the call-recall system and there is an urgent need for all diabetic patients to receive patient education.

Does patient education facilitate diabetic patients' possibilities to reach national treatment targets? A national survey in Swedish primary healthcare.

OBJECTIVE: To describe how patient education is arranged in Swedish primary healthcare (PHC) and to assess whether the type of patient education and individual goal setting have an impact on diabetic patients' possibilities of reaching national treatment targets. DESIGN: A Swedish national survey. SETTING: Swedish PHC. SUBJECTS: Data from 485 primary healthcare centres (PHCCs) and 91,637 diabetic patients reported by the PHCCs to the National Diabetes Register in 2006. MAIN OUTCOME MEASURES: Description of how patient education is arranged, HbA(1c), body mass index, cholesterol, blood pressure, and physical activity. RESULTS: Of the PHCCs that reported how they performed the individual counselling, 50% reported checklist-driven counselling and 8% individualized counselling based on patients' needs. A total of 105 PHCCs reported that they arranged group education. Of these, 67% used pre-planned programmes and 9% individualized the programme to the patients' needs. The majority of PHCCs (96%) reported that they set individual goals (HbA(1c), blood pressure, lipids, and lifestyle). A minority of the PHCCs (27%) reported that the patients were involved in the final decision concerning their goals. Individual goal-setting facilitated patients' possibilities of reaching treatment targets. Goal-setting, list size of PHCCs, and personnel resources explained a variance of 2.1-5.7%. Neither individual counselling (checklist-driven or individualized to patients' needs) nor group education had an impact on patients' possibilities of reaching the targets. CONCLUSION: The current study indicates that improvement is needed in patient education in PHC to facilitate diabetic patients' possibilities of reaching national treatment targets.

Type 2 diabetic patients' experiences of two different educational approaches--a qualitative study.

OBJECTIVE: The aim of the current study was to explore patients' experiences of participating in an empowerment group education programme or receiving individual counselling. METHOD: In total, 28 patients from seven primary care centres were interviewed. Of these, 14 had received individual counselling and the remaining 14 had also participated in 4-5 empowerment group sessions. The semi-structured interviews were tape-recorded, transcribed verbatim and analysed using qualitative content analysis. FINDINGS: Three main categories crystallized from the interviews: (I) relationships, (II) learning and (III) controlling the disease. The relationships in the individual counselling seemed vertical, characterized by one-way communication with care providers acting as superiors and patients as subordinates. The relationships in the empowerment group appeared to be horizontal, characterized by trust and mutual communication. Those who had received individual counselling talked about learning by compliance--care providers acted as superiors, giving advice they expected the patients to follow. In the empowerment groups the patients talked more about participatory learning, whereby the facilitators and patients shared their knowledge and experiences. Controlling the disease could be labelled external in individual counselling, which made it difficult for patients to take responsibility for and control of their diabetes self-care. On the contrary, the patients in the empowerment group achieved the insight that diabetes is a serious disease but can be influenced, which contributed to their experience of self-control. CONCLUSIONS: The current study indicates that vertical relationships, learning by compliance and external control seem to limit patients' ability to take responsibility for their disease, while horizontal relationships, participatory learning and self-control may contribute to strengthening patients' ability to influence and be actively involved in their own care.

Patient education in type 2 diabetes: a randomized controlled 1-year follow-up study.

The aim of the present study was to evaluate the impact of empowerment group education on type 2 diabetes patients' confidence in diabetes knowledge, self-efficacy, satisfaction with daily life, BMI and glycaemic control compared with the impact of routine diabetes care on the same factors at a 1-year follow-up. In this randomized controlled trial, conducted at 7 primary care centres in central Sweden, 101 patients were randomly assigned either to empowerment group education (intervention group) or to routine diabetes care (control group). Out of these, 42 patients in the intervention group and 46 in the control group completed the 1-year follow-up. Before the intervention and at the 1-year follow-up, the patients answered a 27-item questionnaire, and weight, BMI and HbA1c were measured. The questionnaire comprised three domains: confidence in diabetes knowledge, self-efficacy and satisfaction with daily life. At 1-year follow-up, the level of confidence in diabetes knowledge was significantly higher in the intervention group than in the control group (p<0.05). No significant differences were found in self-efficacy, satisfaction with daily life, BMI and HbA1c between the intervention and control group. The empowerment group education did improve patients' confidence in diabetes knowledge with maintained glycaemic control despite the progressive nature of the disease.

Implementing empowerment group education in diabetes.

The overall aim was to gain insight into and understand how physicians and nurses view the implementation of empowerment group education (EGE) in diabetes. Prior to the study the physicians and nurses attended a 2-day empowerment workshop. Further, they had implemented the empowerment approach in two groups of patients with type II diabetes. Three to 9 months later they (five physicians and 11 nurses from six family practices) participated in focus group interviews to evaluate the implementation of the EGE. The interviews were audio-taped, transcribed and analysed using the constant comparative method. The main result showed a conflict in roles. The physicians and nurses knew their role in the traditional approach but not with respect to the empowerment approach, which they needed to grow into. At the same time as they started a new way of working, their role had changed from being an expert to being a facilitator. As experts they felt secure; as facilitators they needed support in their educational process. To implement EGE they required support both from the family practice and from a supervisor in direct connection with the EGE.