Longitudinal assessment of the eating pattern of people with dementia and its association with problems for feeding and malnutrition: a prospective follow-up study protocol.

INTRODUCTION: Dementia conditions the patient's nutrition from the beginning and vice versa. Generating difficulties for feeding (FEDIF) will influence its evolution. There are currently few nutritional longitudinal studies in people with dementia. Most focus on problems already established. The Edinburgh Feeding Evaluation in Dementia (EdFED) Scale identifies FEDIF of patients with dementia by studying their behaviours while eating or being fed. It also indicates areas of potential clinical interventions. METHODS AND ANALYSIS: Prospective multicentre observational study carried out in nursing homes, Alzheimer's day care centres and primary healthcare centres. The study population will be dyads composed by the patient (diagnosed of dementia, over 65 years of age and who have feeding difficulties) and their family caregiver. Sociodemographic variables and nutritional status (body mass index, Mini Nutritional Assessment, blood test and calf and arm circumference) will be assessed. The Spanish version of the EdFED Scale will be completed and the presence of nursing diagnoses related to feeding behaviours will be collected. Follow-up will take place for 18 months. ETHICS AND DISSEMINATION: All data will be carried out respecting European legislation 2016/679 in data protection, and the Spanish 'Organic Law 3/2018 of December 2005'. The clinical data will be kept segregated and encrypted. The informed consent has been obtained. The research has been authorised by the Costa del Sol Health Care District on 27 February 2020 and the Ethics Committee on 2 March 2021. It has obtained funding from the Junta de Andalucía on 15 February 2021. Findings of the study will be presented at provincial, national and international conferences and published in peer-reviewed journals.

Quality of Life, Physical and Mental Health, and Economic Evaluation of Family Caregivers of Chronic Dependent Children: INFAPRINT Cohort Study Protocol.

BACKGROUND: Caregivers for children with complex chronic illnesses may experience emotional and physical strain, especially as concerns attention overload and the perceptions of their own psychosocial situation. These concerns, together with the additional financial cost and the socioeconomic inequalities that arise from caregiving responsibilities, create major challenges to the health status of this population group. METHODS: A prospective analytical longitudinal study will be conducted, based on an exposed cohort of adult caregivers (parents or guardians) for children with complex chronic processes, to evaluate the impact of caregiving responsibilities on the health status of this population group. CONCLUSIONS AND IMPLICATIONS: The practical implications of this study are of great significance for clinical practice. The results of this study have the potential to inform the decision-making process in the healthcare sector and guide future research initiatives. The findings of this study will provide crucial insights into the health-related quality of life of caregivers of children with complex chronic illnesses, which will be valuable in addressing the challenges faced by this population group. This information can be used to improve the availability and accessibility of appropriate health services and to facilitate the development of more equitable health outcomes for caregivers of children with complex chronic illnesses. By highlighting the extent to which this population is affected both physically and mentally, the study can contribute to the development of clinical practices that prioritize the health and well-being of caregivers in the care of children with complex chronic illnesses.

Competency Gradients in Advanced Practice Nurses, Specialist Nurses, and Registered Nurses: A Multicentre Cross-Sectional Study.

(1) Background: Identifying differences in the competencies of different areas of nursing is a crucial aspect for determining the scope of practice. This would facilitate the creation of a formal structure for clinical practice in advanced and specialised services. The aims of this study are to analyse the distribution of advanced competencies in registered, specialist and advanced practice nurses in Spain, and to determine the level of complexity of the patients attended by these nurses. (2) Methods: A cross-sectional study was developed on registered, specialist and advanced practice nurses, all of whom completed an online survey on their perceived level of advanced competencies and their professional characteristics. (3) Results: In total, 1270 nurses completed the survey. Advanced practice nurses recorded the highest self-perceived level of competency, especially for the dimensions of evidence-based practice, autonomy, leadership and care management. (4) Conclusions: Among registered, specialist and advanced practice nurses, there are significant differences in the level of self-perceived competencies. Patients attended by advanced practice nurses presented the highest levels of complexity. Understanding these differences could facilitate the creation of a regulatory framework for clinical practice in advanced and specialized services.

Components of case management in caring for patients with dementia: a mixed-methods study.

BACKGROUND: Case management has shown improvements in some health outcomes for dementia patients and their families. However, despite its benefits the components of case management in order to provide effective patient and family care remain unknown at present. Thus, the aim of this study is to identify the specific components of case management in caring for patients with dementia and to determine the necessary intensity of its deployment to enhance outcomes for these patients and their caregivers. METHODS: Mixed-methods study with a qualitative phase to characterise forms of service provision, according to the case management components involved, followed by a quantitative phase to analyse the correlations between different patterns of service provision, adverse events in patients and caregiver overload. This study will be based on the variables described in the RANGE.COM register. DISCUSSION: This research is expected to achieve a reproducible, evaluable set of interventions that can be modelled to optimise case management effectiveness for patients with dementia. Interactions between patients with dementia, their family caregivers and case management healthcare services, the components of these interactions and their association with the conditions of the individuals concerned are issues of great interest in the field of case management, which is constantly evolving.

A protocol for a randomized trial measuring flowmetry in risk areas for pressure ulcer: Hyperoxygenated fatty acids vs olive oil.

BACKGROUND: Pressure ulcers are a common adverse event in healthcare. To date, no flowmetry studies have been conducted to compare hyperoxygenated fatty acids (HFA) vs. extra-virgin olive oil (EVOO) in alleviating this condition. AIMS: To determine and evaluate the effect of the application of HFA vs. EVOO on tissue oxygenation and perfusion in heels under pressure, in healthy persons and in hospitalised patients. DESIGN: Two-phase experimental study. METHODS: Phase 1 will be conducted with healthy subjects, using a randomised, open study design, evaluating an intrasubject control group. Phase 2 will focus on hospitalised subjects, with a randomised, open study group vs. a control group. DISCUSSION: This Project is undertaken to identify the mechanisms that intervene in the genesis of pressure ulcers and to determine whether there are differences in outcomes between the application of HFA vs. EVOO as a preventive measure The results of this study are of economic importance (due to the price difference between the products used) and will also impact on usual clinical practice for patients with impaired mobility and liable to suffer from pressure ulcers, by considering an alternative to established preventive measures.

Effectiveness of a Diabetes Education Program based on Tailored interventions and Theory of Planned Behaviour: Cluster randomized controlled trial protocol.

AIM: To measure the Effectiveness of a Diabetes Education Program for people with T2DM, based on Tailored interventions and the Theory of Planned Behaviour. DESIGN: Cluster randomized controlled clinical trial. METHODS: This multicentre study will be carried out at 30 primary healthcare centres, where 436 persons with Type 2 Diabetes Mellitus (T2DM), aged between 18-75 years, will be recruited. The experimental educational program to be applied is modelled using components obtained from a systematic review and prior qualitative analysis. In addition, a taxonomy of nursing practice is used to standardize the program, based on the Theory of Planned Behaviour as a conceptual model. The intervention will be carried out by community nurses, using ADAPP-Ti® , an application developed with FileMaker Pro v.18. The control group will receive usual care and data will be collected at 6, 12, and 18 months, for both groups. The primary outcome considered will be glycosylated haemoglobin and cardiovascular factors, while the secondary ones will be tobacco consumption, body mass index, barriers to self-care, health-related quality of life, and lifestyle modification. The protocol was approved by the Ethics Committee of the Province of Malaga (Spain) in November 2014. DISCUSSION: The degree of metabolic control in T2DM is not always associated with healthy lifestyles and significant levels of medication are often prescribed to achieve clinical objectives. An intervention focused on needs, based on the best available evidence and a solid conceptual framework, might successfully consolidate appropriate self-care behaviour in this population. IMPACT: The study will result in the publication of an educational program featuring well-defined interventions and activities that will enable clinicians to tailor health care to the individual's needs and to combat treatment inertia in attending this population.

Quality of Life, Physical and Mental Health of Family Caregivers of Dependent People with Complex Chronic Disease: Protocol of a Cohort Study.

BACKGROUND: informal caregivers have a high risk of suffering from diseases derived from the chronic stress to which they are subjected for their dedication to the care of their relatives. Such stress has a direct influence on the person cared for, mainly affecting the quality of their care. Therefore, the aim of the present study is to assess the association of caregiving on physical and mental perceived health in family caregivers of dependent adults with complex chronic diseases. METHODS: a prospective longitudinal cohort study, with a follow-up period of 36 months (HUELLA cohort). The exposed cohort will be formed by family caregivers of dependent patients with complex chronic pathologies. The unexposed cohort will be taken from the general population adjusted for age, sex and health. Outcome variables will include attendance to health services, consumption of psychoactive drugs, dedication to care (only in exposed cohort), concession of the Act on Promotion of Personal Autonomy and Care for dependent persons (exposed only), perceived physical and mental health, depression level, burden level and new diagnosis of chronic pathology of the caregiver during the study. RESULTS: the expected results will be applicable and will incorporate improvements to the usual health system clinical practice, providing feedback to professionals dedicated to the provision, planning and design of services to family caregivers, as well as to groups and organizations of caregivers. CONCLUSIONS: investments in preventing low-quality informal care are key, mainly through early identification and interventions to support caregivers who suffer from stress, anxiety or depression.

Impact of self-care programmes in type 2 diabetes mellitus population in primary health care: Systematic review and meta-analysis.

AIMS AND OBJECTIVES: To evaluate the effectiveness of self-care programmes in type 2 diabetes mellitus (T2DM) population in primary health care. BACKGROUND: The impact of educational interventions on T2DM has been evaluated in various contexts, but there is uncertainty about their impact in that of primary care. DESIGN: Systematic review and meta-analysis. METHODS: A search was conducted in PubMed, CINAHL, WOS and Cochrane databases for randomised controlled trials carried out in the period January 2005-December 2017, including studies with at least one face-to-face educational interventions. The quality of the evidence for the primary outcome was evaluated using the GRADE System. A meta-analysis was used to determine the effect achieved although only the results classified as critical or important were taken into consideration. Checklist of Preferred Reporting Items for Systematic Reviews and Meta-analyses has been followed. PROSPERO registration Number: CRD42016038833. RESULTS: In total, 21 papers (20 studies) were analysed, representing a population of 12,018 persons with T2DM. For the primary outcome, HbA1 c, the overall reduction obtained was -0.29%, decreasing the effect in long-term follow-up. The quality of the evidence was low/very low due to very serious risk of bias, inconsistency and indirectness of results. Better results were obtained for individual randomised trials versus cluster designs and in those programmes in which nurses leaded the interventions. The findings for other cardiovascular risk factors were inconsistent. CONCLUSIONS: Educational interventions in primary care addressing T2DM could be effective for metabolic control, but the low quality of the evidence and the lack of measurement of critical results generates uncertainty and highlights the need for high-quality trials. RELEVANCE TO CLINICAL PRACTICE: Most of self-care programmes for T2DM in primary care are focused on metabolic control, while other cardiovascular profile variables with greater impact on mortality or patient-reported outcomes are less intensely addressed.

Perfusion, tissue oxygenation and peripheral temperature in the skin of heels of healthy participants exposed to pressure: a quasi-experimental study.

AIM: To evaluate the relationship between the pressure exerted on the heel of one foot resting directly on a mattress, versus that exerted on the other heel, protected by a pillow beneath the Achilles tendon area and the changes thus produced in perfusion, oxygenation and temperature in the skin of heels of healthy volunteers lying in a supine position. DESIGN: Experimental study in a pre-clinical phase, with healthy volunteer participants and intrapeople control. METHODS: The study was carried out from November 2017 - May 2018. A pressure measurement surface was placed between the participant and the constant low-pressure support surface. Doppler laser devices were used to measure local temperature and perfusion. The degree of oxygenation was determined using an infrared beam close to the pressure zone in each heel. Both feet rested immobile on the bed, in a natural position, for 2 hr. To ensure intrapeople control, in every case the left heel was raised slightly, compared with the right. RESULTS: Eighteen participants took part in this study. Analysis of the results obtained showed that capillary blood flow was significantly reduced in the heel subjected to pressure, compared with the other heel, while no significant effects on oxygen saturation or temperature were observed. The variables associated with greater oxygen saturation were capillary blood flow, local temperature and pressure exerted. Fat-free mass, fat mass and duration of exposure to pressure were all significantly associated with reduced oxygen saturation. CONCLUSIONS: In healthy participants, when the heel is subjected to constant pressure against a constant low-pressure support surface, there is a significant reduction in blood flow, compared with the heel where pressure is relieved. However, there are no significant differences in temperature or tissue oxygenation. IMPACT: Significant reductions in vascular flow were observed; however, the oxygenation and temperature of the heel tissues remained unchanged. These findings, corroborated in real patients, would advance our understanding and facilitate decision-making on measures to prevent pressure ulcers, such as repositioning or tissue protection. TRIAL REGISTRATION: The protocol is registered in ClinicalTrials.gov (NCT02736838).

Characteristics of the provision of case management services in the community setting in Andalusia based on the RANGECOM registry. / Características de la provisión del servicio de gestión de casos en el entorno comunitario en Andalucía a partir del registro RANGECOM.

OBJECTIVE: To describe the characteristics of case management in terms of population served, interventions, use of services and outcomes such as mortality, readmissions, pressure ulcers, falls, drug problems and institutionalization. METHOD: Follow-up study of a cohort, from the RANGECOM Multicentric Registry of Andalusia. The study population were patients included in the case management services of Health Centres and their family caregivers. RESULTS: Data from 835 patients with a mean age of 76.8years (SD:12.1), 50.24% women, are presented. They had an important comorbidity (Charlson 3.1, SD:2.5) and high dependence (Barthel 37.5, SD:31.4). Sixty-two point two percent of the interventions deployed by the case managers were grouped into three domains: behavioural (26.0%), health system (20.2%) and safety (14.1%). Mortality was 34.4% and hospital admissions 38.1%. Patients with more hospital readmissions had more visits to the Emergency Department (OR:1.41; 95%CI: 1.22-1.63), more telephone interventions by case managers (OR:1.12; 95%CI: 1.02-1.24) and imaging tests (OR:1.37; 95%CI: 1.17-1.60), together with greater caregiver burden (OR:1.31; 95%CI: 1.08-1.59), the presence of medical devices at home (OR:1.69; 95%CI: 1.00-2.87) and received less "Case Management" intervention. CONCLUSIONS: The patients who absorb the demand of case management nurses present high complexity, for which they deploy behavioural interventions, navigation through the health system and clinical safety.

Validation of the Spanish version of the Edinburgh Feeding Evaluation in Dementia Scale for older people with dementia.

AIMS: To adapt the Edinburgh Feeding Evaluation in Dementia Scale (EdFED) for use in a Spanish-speaking population and to assess its validity and reliability in patients with dementia. METHOD: A cross-sectional study was carried out in two stages: 1. Cross-cultural adaptation (translation, back-translation, review by committee of experts, pilot test and weighting of results); 2. Clinimetric validation comprising interobserver reliability assessment, test-retest reliability and internal consistency. To determine construct validity, confirmatory factorial analysis and principal components analysis were performed by oblique rotations. Criteria validity was analysed using the Pearson correlation (p<0.05) with the BMI, MNA and analytical values of albumin, transferrin, cholesterol, absolute lymphocytes and total proteins. Data collection was carried out for six months in 2016 in nursing homes and Alzheimer's day centers in the province of Málaga (Spain), at nine centers, with 262 patients (aged over 60 years and presenting feeding difficulties), 20 nurses, 20 professional caregivers and 103 family caregivers. RESULTS: A version of EdFED culturally adapted to Spanish was obtained. The sample presented the following characteristics: 76.3% women, mean age 82.3 years (SD: 7.9); MNA 18.73 (SD: 4.44); BMI 23.99 (SD: 4.72); serum albumin 3.79 mg/dl (SD: 0.36). A Cronbach's alpha of 0.88 was obtained, with an inter-item global correlation of 0.43 and a homogeneity index ranging from 0.42 to 0.73. The exploratory factor analysis reproduced the three-factor model identified by the original authors, explaining 62.32% of the total variance. The criterion validity showed a good inverse correlation with MNA and a moderate one with albumin, total proteins, transferrin and BMI. DISCUSSION: The Spanish version of EdFED is reliable and valid for use in elderly people with dementia. The most appropriate for our environment is the three-factor model, which maintains the original factors, with a slight redistribution of the items.

Peripheral perfusion and oxygenation in areas of risk of skin integrity impairment exposed to pressure patterns. A phase I trial (POTER Study).

AIM: The aim of this study was to analyse the change in peripheral oxygenation and microvascular flow in tissues subjected to different pressure regimes in healthy subjects and in hospitalized patients. BACKGROUND: The presence of pressure ulcers in hospitalized patients is a common complication that has a negative impact on health and often prolongs hospital stay and increases healthcare costs. DESIGN: Experimental non-controlled, non-randomized study in two phases: pre-clinical and clinical. METHODS: The pre-clinical phase will be conducted in healthy volunteers and the clinical phase, in patients at risk of impaired skin integrity. Vascular flow, tissue oxygenation and local temperature in areas at risk of pressure ulcers will be evaluated by Doppler laser in subjects lying on a capacitive surface to measure pressure at 10,249 points. Different levels of pressure will be generated by changes in body position and changes in tissue perfusion and oxygenation will be monitored for up to 4 hours, to determine the implications for repositioning interventions in patients at risk. This study was funded in July 2015. The protocol is registered in ClinicalTrials.gov (NCT02736838). DISCUSSION: Pressure ulcer is a significant and complex health problem in long-term bedridden patients and there is currently no effective treatment or efficient prevention method. The information provided by our study will provide an accurate assessment of different thresholds for the onset of damage to the skin, associated with different body positions and pressure levels. TRIAL REGISTRATION: The protocol is registered in ClinicalTrials.gov (NCT02736838).

A cost minimization analysis of olive oil vs. hyperoxygenated fatty acid treatment for the prevention of pressure ulcers in primary healthcare: A randomized controlled trial.

Pressure ulcers represent a major current health problem and cause an important economic impact on the healthcare system. Most studies on the prevention of pressure ulcers have been carried out in hospital contexts, with respect to the use of hyperoxygenated fatty acids (HOFA), and to date no studies have specifically examined the use of olive oil-based treatments. AIM: To evaluate the cost of using extra virgin olive oil, rather than HOFA, in the prevention of pressure ulcers among persons with impaired mobility and receiving home care. STUDY DESIGN: Cost minimization analysis of the results obtained from a noninferiority, triple-blind, parallel, multicenter, randomized clinical trial. Population attending primary healthcare centers in Andalusia (Spain). STUDY SAMPLE: 831 immobilized patients at risk of suffering pressure ulcers. These persons were included in the study and randomly assigned as follows: 437 to the olive oil group and 394 to the HOFA group. At the end of the follow-up period, the results obtained by the olive oil group were not inferior to those of the HOFA group, and did not exceed the 10% delta limit. The total treatment cost for 16 weeks was €19,758 with HOFAs and €9,566 with olive oil. Overall, the olive oil treatment was €10,192 less costly. It has been concluded the noninferiority of olive oil makes this product an effective alternative for the prevention of pressure ulcers in patients who are immobilized and in a domestic environment. This treatment enables considerable savings in direct costs. TRIAL REGISTRATION: Clinicaltrials.gov Identifier: NCT01595347. Date: 2011-2013.

Validation of the Spanish version of the Edinburgh feeding evaluation in dementia scale applied to institutionalized older persons with dementia: a study protocol.

AIM: The aim of this study was to obtain a Spanish version of the Edinburgh Feeding Evaluation in Dementia Scale version, to assess its reliability for use by medical staff and caregivers at residential care homes, to evaluate by confirmatory methods its construct validity. A further aim was to determine the criterion validity with respect to biochemical markers of malnutrition such as serum albumin, transferrin, cholesterol and lymphocytes, the body mass index and the mini nutritional assessment. DESIGN: Clinimetric cross-validation study. METHODS: Institutionalized subjects with dementia will be observed while consuming meals and evaluated with the instrument independently by nurses and caregivers.

[Spanish cultural adaptation and psychometric validation of the Summary of Diabetes Self-Care Activities measure (SDSCA) among persons with type 2 diabetes mellitus]. / Adaptación cultural al español y validación psicométrica del Summary of Diabetes Self-Care Activities measure (SDSCA) en personas con diabetes mellitus tipo 2.

OBJECTIVE: To undertake the cultural adaptation and the psychometric assessment of the Summary of Diabetes Self-Care Activities measure (SDSCA) in Spanish population with type 2 diabetes mellitus. DESIGN: Clinimetric validation study. SETTING: Primary health care centers of District Malaga and Valle del Guadalhorce. PARTICIPANTS: Three hundred thirty-one persons with type 2 diabetes mellitus. MAIN MEASUREMENTS: The SDSCA validated in mexican population was subjected to semantic and content equivalence using a Delphi method, its legibility was determined by INFLESZ scale. Subsequently psychometric validation was conducted through exploratory and confirmatory factor analysis (herein after EFA and CFA), internal consistency, test-retest reliability and discriminant validity. RESULTS: Two rounds were needed to achieve the consensus in between the panel members. Then, the index provided a good readability. The EFA suggested a model with 3 factors (diet, exercise and self-analysis) with 7 items which explained 79.16% variance. The results of CFA showed a good fit of SDSCA-Sp. The Internal consistency was moderate to low (α-Cronbach =0.62) and test-retest reliability was evaluated in 198 patients (t=0.462-0.796, p<0.001) with a total correlation of 0.764 (p< 0.0001). CONCLUSIONS: The SDSCA-Sp is used, in a valid way to assess self-care in type 2 DM version in clinical practice and research with similar clinimetric properties to previous studies.

A systematic review of the effectiveness and roles of advanced practice nursing in older people.

OBJECTIVES: To identify, assess and summarize available scientific evidence about the effect of interventions deployed by advanced practice nurses when providing care to older people in different care settings, and to describe the roles and components of the interventions developed by these professionals. BACKGROUND: In older people, evidence of advanced practice roles remains dispersed along different contexts, approaches and settings; there is little synthesis of evidence, and it is not easy to visualize the different practice models, their components, and their impact. DESIGN: Systematic review. DATA SOURCES: Sixteen electronic databases were consulted (1990-2014). The research also included screening of original studies in reviews and reports from Centers of Health Services Research and Health Technology Agencies. REVIEW METHODS: Studies were assessed by two reviewers with the Cochrane risk of bias tool. They were classified depending on the type of follow-up (long and short-term care) and the scope of the service (advanced practice nurses interventions focused on multimorbid patients, or focused on a specific disease). RESULTS: Fifteen studies were included. In long-term settings, integrative, multi-component and continuous advanced practice nursing care, reduced readmissions, and increased patients' and caregivers' satisfaction. Advanced practice nurses were integrated within multidisciplinary teams and the main interventions deployed were patient education, multidimensional assessments and coordination of multiple providers. CONCLUSION: Positive results have been found in older people in long-term care settings, although it is difficult to discern the specific effect attributable to them because they are inserted in multidisciplinary teams. Further investigations are needed to evaluate the cost-effectiveness of the two modalities detected and to compare internationally the interventions developed by advanced practice nurses.

[Complex chronic care situations and socio-health coordination]. / Situaciones de cronicidad compleja y coordinación sociosanitaria.

Patient-centered healthcare is currently one of the most pursued goals in health services. It is necessary to ensure a sufficient level of cooperative and coordinated work between different providers and settings, including family and social and community resources. Clinical integration occurs when the care provided by health professionals and providers is integrated into a single coherent process through different professions using shared guidelines and protocols. Such coordination can be developed at three levels: macro, which involves the integration of one or more of the three basic elements that support health care (the health plan, primary care and specialty care), with the aim of reducing fragmentation of care; meso, where health and social services are coordinated to provide comprehensive care to elderly and chronic patients; and micro, aimed to improve coordination in individual patients and caregivers. The implementation of new roles, such as Advanced Practice Nursing, along with improvements in family physicians' problem-solving capacity in certain processes, or modifying the place of provision of certain services are key to ensure services adapted to the requirements of chronic patients.

Description of Advanced Practice Nurses Interventions Through the Nursing Interventions Classification in Different Care Settings for Older People: A Qualitative Study.

PURPOSE: To identify the interventions provided by advanced practice nurses to older people in different contexts with standardized nursing language. DATA SOURCE: This is a qualitative study. Content analysis was applied to the texts of experimental research papers about advanced practice nursing for older people. Deductive coding through the Nursing Intervention Classification was carried out. DATA SYNTHESIS: Seventy-three interventions codified with the Nursing Intervention Classification were extracted, mainly related to the behavioral and healthcare system domains, which could be explained due to the need for improving the psychosocial functioning and self-care of these patients to preserve their quality of life. CONCLUSION AND IMPLICATION FOR NURSING PRACTICE: Advanced practice nurses interventions can be better described, reported, and analyzed along different contexts with standardized languages.

Living with chronicity and complexity: Lessons for redesigning case management from patients' life stories - A qualitative study.

RATIONALE, AIMS AND OBJECTIVES: Case management is commonly used to provide health care for patients with multiple chronic conditions. However, the most effective form of team organization and the necessary support structures need to be identified. In this respect, patients' views could provide a valuable contribution to improving the design of these services. To analyse the experiences of patients with chronic diseases and of caregivers, in relation to health care services and mechanisms, and to identify means of modelling case management services. METHODS: The method used was a qualitative study based on life stories, and semi-structured interviews with 18 patients with complex chronic diseases and with their family caregivers, selected by purposeful sampling in primary health care centres in Andalusia (southern Spain) from 2009 to 2011. RESULTS: Three transition points were clearly identified: the onset and initial adaptation, the beginning of quality-of-life changes, and the final stage, in which the patients' lives are governed by the complexity of their condition. Health care providers have a low level of proactivity with respect to undertaking early measures for health promotion and self-care education. Care is fragmented into a multitude of providers and services, with treatments aimed at specific problems. CONCLUSIONS: Many potentially valuable interventions in case management, such as information provision, self-care education and coordination between services and providers, are still not provided.