Measurement of treatment burden in patients with multimorbidity in the Netherlands: translation and validation of the Multimorbidity Treatment Burden Questionnaire (NL-MTBQ).

BACKGROUND: Multimorbidity is a growing problem. The number and complexity of (non-)pharmaceutical treatments create a great burden for patients. Treatment burden refers to the perception of the weight of these treatments, and is associated with multimorbidity. Measurement of treatment burden is of great value for optimizing treatment and health-related outcomes. OBJECTIVE: We aim to translate and validate the Multimorbidity Treatment Burden Questionnaire (MTBQ) for use in the Dutch population with multimorbidity and explore the level of treatment burden. METHODS: Translating the MTBQ into Dutch included forward-backward translation, piloting, and cognitive interviewing (n = 8). Psychometric properties of the questionnaire were assessed in a cross-sectional study of patients with multimorbidity recruited from a panel in the Netherlands (n = 959). We examined item properties, dimensionality, internal consistency reliability, and construct validity. The level of treatment burden in the population was assessed. RESULTS: The mean age among 959 participants with multimorbidity was 69.9 (17-96) years. Median global NL-MTBQ score was 3.85 (interquartile range 0-9.62), representing low treatment burden. Significant floor effects were found for all 13 items of the instrument. Factor analysis supported a single-factor structure. The NL-MTBQ had high internal consistency (α = 0.845), and provided good evidence on the construct validity of the scale. CONCLUSION: The Dutch version of the 13-item MTBQ is a single-structured, valid, and compact patient-reported outcome measure to assess treatment burden in primary care patients with multimorbidity. It could identify patients experiencing high treatment burden, with great potential to enhance shared decision-making and offer additional support.

A systematic literature review looking for the definition of treatment burden.

BACKGROUND: Treatment burden is an emerging concept in health care literature. It can complicate the patients' condition and perhaps result in poor adherence to treatment, which is linked to worse clinical outcomes. However, until now there is no definition for treatment burden recognized by all stakeholders. This review was prepared in order to find what available definitions for treatment burden are present in the literature. METHODS: A systematic review of the literature was prepared looking for definitions of treatment burden in adult patients. Articles about adults aged 18 years or older from both genders with one or more medical conditions that contained a (new) definition of treatment burden were included. The search approach consisted of conventional systematic review database searching of multiple resources including Embase, Medline, PsycINFO, and CINAHL. Two independent reviewers screened the titles and abstracts, and full papers. RESULTS: The searches resulted in 8045 records, of which 16 articles were included. Based on quality appraisal criteria, we decided that two definitions had better evaluations than the rest of the definitions, the first one defining it as the impact of the 'work of being a patient' on functioning and well-being, the second as the actions and resources they devote to their healthcare. CONCLUSION: We consider the definition concentrating on actions and resources patients devote to their healthcare, including difficulty, time, and out-of-pocket costs dedicated to the healthcare tasks such as adhering to medications, dietary recommendations, and self-monitoring as the one probably comprising most domains of Treatment Burden that we have found in our search in the existing literature. However, adding even more domains to this definition and differentiating explicitly between patient's perception and caregiver's perception in the definition could in our opinion result in an improved definition. Also patients' evaluation of this definition is commendable.

Patients with multimorbidity and their treatment burden in different daily life domains: a qualitative study in primary care in the Netherlands and Belgium.

BACKGROUND: Physicians and other healthcare professionals involved in the care of patients with multimorbidity should consider the problems these patients experience in managing their own conditions. However, treatment burden from the patient's perspective has been poorly explored, even though this might hamper treatment adherence. OBJECTIVE: The present study examined the experiences of patients with multimorbidity in primary care in the Netherlands and Belgium using semi-structured interviews, with special attention to the daily life domains of treatment burden. DESIGN: Individual interviews gathering qualitative data to explore the treatment burden experienced by patients with multimorbidity in primary care. Twenty-two patients agreed to participate: seven men and fifteen women. The recorded interviews were transcribed verbatim and evaluated using thematic content analysis. RESULTS: The patients reported numerous aspects of treatment burden they experienced in various domains of their daily lives. These topics were categorized into four daily life domains of burden: organization of care, medication, patient's role, and impact on daily life (including the involvement of caregivers). CONCLUSIONS: The findings indicate that primary care patients with multimorbidity report treatment burden in several domains of their daily lives, not restricted to medical issues, such as side effects of medication. Some issues, such as those related to organization of care, seem easily modifiable. Further research is required focusing on special factors of treatment burden as experienced by patients with multimorbidity, and the implications for treatment adherence, especially in European settings, as little information is currently available.

Describing patients' needs in the context of research priorities in patients with multiple myeloma or Waldenstrom's disease: A truly patient-driven study.

BACKGROUND: To ensure true patient-centered care, the urgency of patient participation in research is increasingly recognized. This study takes this one step further and reports on patient participation in describing patients' needs for improving quality of care in the context of research priorities - a challenging partnership with patients in research as we yet lack experience in the Netherlands. OBJECTIVES: 1) To illustrate the process of describing patients' needs in the context of research priorities for patients with blood cancer (multiple myeloma or Waldenstrom's disease) with the purpose to improve the quality of health care. 2) To describe the experienced needs in the context of research priorities in the patients. METHODS: Following the Dialogue Model, we first established a balanced project group and agreed on the study protocol, followed by the actual data collection of which the most important steps included: individual interviews and focus groups with purposeful samples of patients, a questionnaire that was sent to all members of the patient organization (n=1,782), and a dialogue meeting with patients to prioritize the final issues. RESULTS: 1) Ten interviews and two focus groups were successfully conducted. Response rate on the questionnaire averaged 44%. 2) Main research topics: improved information on all aspects of disease and treatment, involving patients in decision making, organization of care and the burden of neuropathy. DISCUSSION: Given the process of data collection we believe that the patients' needs for quality of care improvements in the context of research priorities that were described are valid and representative. The novelty of this approach was that patients themselves contacted researchers to assess the patients' priorities in a scientific and reliable way.

HIV/AIDS, beersellers and critical community health psychology in Cambodia: a case study.

This case study illustrates a participatory framework for confronting critical community health issues using 'grass-roots' research-guided community-defined interventions. Ongoing work in Cambodia has culturally adapted research, theory and practice for particular, local health-promotion responses to HIV/AIDS, alcohol abuse and other challenges in the community of Siem Reap. For resource-poor communities in Cambodia, we recycle such 'older' concepts as 'empowerment' and 'action research'. We re-imagine community health psychology, when confronted with 'critical', life-and-death issues, as adjusting its research and practices to local, particular ontological and epistemological urgencies of trauma, morbidity and mortality.

40 years of biannual family medicine research meetings--the European General Practice Research Network (EGPRN).

OBJECTIVE: To document family medicine research in the 25 EGPRN member countries in 2010. DESIGN: Semi-structured survey with open-ended questions. SETTING: Academic family medicine in 23 European countries, Israel, and Turkey. SUBJECTS: 25 EGPRN national representatives. MAIN OUTCOME MEASURES: Demographics of the general population and family medicine. Assessments, opinions, and suggestions. RESULTS: EGPRN has represented family medicine for almost half a billion people and > 300,000 general practitioners (GPs). Turkey had the largest number of family medicine departments and highest density of GPs, 2.1/1000 people, Belgium had 1.7, Austria 1.6, and France 1.5. Lowest GP density was reported from Israel 0.17, Greece 0.18, and Slovenia 0.4 GPs per 1000 people. Family medicine research networks were reported by 22 of 25 and undergraduate family medicine research education in 20 of the 25 member countries, and in 10 countries students were required to do research projects. Postgraduate family medicine research was reported by 18 of the member countries. Open-ended responses showed that EGPRN meetings promoted stimulating and interesting research questions such as comparative studies of chronic pain management, sleep disorders, elderly care, healthy lifestyle promotion, mental health, clinical competence, and appropriateness of specialist referrals. Many respondents reported a lack of interest in family medicine research related to poor incentives and low family medicine status in general and among medical students in particular. It was suggested that EGPRN exert political lobbying for family medicine research. CONCLUSION: Since 1974, EGPRN organizes biannual conferences that unite and promote primary care practice, clinical research and academic family medicine in 25 member countries.

Creating new career pathways to reduce poverty, illiteracy and health risks, while transforming and empowering Cambodian women's lives.

Community health psychology provides a framework for local citizens themselves to systematically affect change in health and social inequalities, particularly through Participatory Action Research (PAR). The Cambodian NGO SiRCHESI launched a 24-month Hotel Apprenticeship Program (HAP) in 2006 to provide literacy, English, social skills, health education, hotel skills-training, work experience and a living wage to women formerly selling beer in restaurants; there they had faced workplace risks including HIV/AIDS, alcohol overuse, violence and sexual coercion. Quantitative and qualitative analyses indicate changes in health-related knowledge, behaviour, self-image and empowerment, as HAP trainees were monitored and evaluated within their new career trajectories.

Gender-specific differences in the prevention of asthma-like symptoms in high-risk infants.

The prevalence of asthma in children has increased in the last decades, and gender-specific differences in asthma development have recently been suggested. The present study investigates whether gender differences are present in a population of young children (0-2 yr) with a high risk for the development of asthma on the basis of the presence of asthma in first-degree relative(s). The study was performed on 222 children (118 boys, 104 girls) with a familial predisposition of asthma, which received standardized recommendations to reduce exposure to allergens (dust mite, pets and food allergens) and to passive smoking. Health outcome (wheezing episodes and shortness of breath) and compliance with allergen-reducing measures were studied by means of multiple regression analyses. Boys suffered more from asthma-like complaints than girls, as diagnosed by the general practitioner (32% vs. 18%, respectively, p = 0.023). Compliance with intervention measures was similar for boys and girls for most allergens, but food allergen reduction was better applied for girls: duration of exclusive breastfeeding was longer in girls (median 9 wk vs. 4 wk, p = 0.009). Further analysis showed that 4 wk of longer breastfeeding reduced the number of wheezing episodes and shortness of breath in boys by 19% and 15%, respectively, but not in girls, suggesting sex as an effect modifier in the relationship between breastfeeding and asthma-like symptoms. The present findings indicate that application and effects of prevention strategies for children with a high risk for developing asthma might be gender-specific and suggest a special importance of breastfeeding boys.

Incidence of epilepsy and predictive factors of epileptic and non-epileptic seizures.

PURPOSE: To estimate the incidence of unprovoked seizures (US) and epilepsy in a general population from the southern part of the Netherlands, in relation to age, sex, etiology and seizure type, and to identify predictive factors of the epileptic and non-epileptic seizures. METHODS: All patients aged > or =14 years with a first seizure or who had undiagnosed seizures before the study period were included. Patients were identified from different sources and were independently evaluated and classified by a team of neurologists. A predictive profile for the occurrence of epileptic and non-epileptic seizures was obtained by stepwise logistic regression analysis. RESULTS: The overall annual incidence was 55/100,000 and 30/100,000 for US and epilepsy, respectively. The age-specific annual incidence of US and epilepsy increased with age and reached 120/100,000 and 62/100,000 for the > or =65 years of age group, respectively. The incidence of epilepsy and US in males was higher than in females and partial seizures prevailed over generalized seizures (40 versus 9/100,000). In up to 35% of the cases with US or epilepsy, the etiology was mainly cerebrovascular disease and brain tumors. Predictors for epileptic versus non-epileptic seizures of organic origin were an epileptiform EEG pattern (OR=0.06) versus a history of hypertension (OR=2.8) or cardiovascular disease (OR=5.4). Strong predictors for seizures of non-organic origin were female sex (OR=2.2) and head injury (OR=2.4). CONCLUSIONS: The incidence of US and epilepsy (overall, and age-, sex-, seizure-specific) was similar to those reported by other developed countries. The predictive factors found in this study may assist in the early diagnosis of seizures.

Acute uncomplicated lower urinary tract infections in general practice: clinical and microbiological cure rates after three- versus five-day treatment with trimethoprim.

OBJECTIVES: Epidemiological studies indicate that acute uncomplicated urinary tract infections (UTI) in women can be successfully treated with short treatment regimens. However, the findings from the literature do not match experiences in daily practice. METHODS: A randomised, controlled trial evaluating the microbiological and clinical (self-reported) cure rates of a three-day vs. five-day treatment regimen with trimethoprim for UTI in women. RESULTS: No statistically significant difference in bacteriological cure rate was found between the three-day and five-day regimen. One day after the shorter regimen 44% of women considered themselves as 'not-recovered' due to persistence of the symptoms compared with 35% after the five-day treatment (p > 0.05). Three days after therapy these percentages were 30 and 25% respectively. CONCLUSION: The relatively high percentage of persistent symptoms one day after the three-day regimen might be responsible for general practitioners believing that short regimens are not successful. It is therefore advisable that if urine samples are controlled to wait at least three days after finishing treatment.

The diagnosis of epileptic and non-epileptic seizures.

The aim of this prospective population-based study was to systematically define a cluster of diagnostic items which can assist in the early identification and classification of epileptic and non-epileptic seizures. A cohort of patients aged > or =14 years, suspected with a first epileptic seizure, were included in this study. A team of neurologists evaluated and classified all cases. Diagnostic items for epileptic and non-epileptic seizures were identified using logistic regression analysis. Three hundred and fifty cases entered this study. Distinctive features for epileptic seizures were postictal confusion (OR 0.09), an epileptiform EEG pattern (OR 0.02), and abnormal neuroimaging findings (OR 0.07), whereas for non-epileptic seizures of organic origin there was a history of hypertension (OR 7.5), and provoking factors (OR 13.4) such as exercise and warmth. Diagnostic items for seizures of non-organic origin were a history of febrile seizures (OR 5.8), treatment by a psychologist or psychiatrist (OR 9.1), and presentiment of the seizure (OR 3.7) such as a feeling of choking and palpitations. A separate analysis for the patients who were systematically investigated provided some additional diagnostic items for the different subgroups of patients. For instance, back arching during the seizure for the patients with seizures of non-organic origin and female sex for the patients with non-epileptic seizures of organic origin.

Systematic review and meta-analysis of incidence studies of epilepsy and unprovoked seizures.

PURPOSE: To evaluate the methodology of incidence studies of epilepsy and unprovoked seizures and to assess the value of their findings by summarizing their results. METHODS: A Medline literature search from January 1966 to December 1999 was conducted. In each selected study, key methodologic items such as case definition and study design were evaluated. Furthermore, a quantitative meta-analysis of the incidence data was performed. RESULTS: Forty incidence studies met the inclusion criteria. There was considerable heterogeneity in study methodology, and the methodologic quality score was generally low. The median incidence rate of epilepsy and unprovoked seizures was 47.4 and 56 per 100,000, respectively. The age-specific incidence of epilepsy was high in those aged 60 years or older, but was highest in childhood. Males had a slightly higher incidence of epilepsy (median, 50.7/100,000) than did females (median, 46.2/100,000), and partial seizures seemed to occur more often than generalized seizures. Developing countries had a higher incidence rate of epilepsy (median, 68.7/100,000) than did industrialized countries (median, 43.4/100,000). Similar results were found for unprovoked seizures. The incidence of epilepsy over time appears to decrease in children, whereas it increases in the elderly. CONCLUSIONS: The age-specific incidence of epilepsy showed a bimodal distribution with the highest peak in childhood. No definitive conclusions could be reached for the incidence of unprovoked seizures and other specific incidence rates of epilepsy. More incidence studies with an adequate study methodology are needed to explore geographic variations and time trends of the incidence of epilepsy and unprovoked seizures.