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.

Routine healthcare disruptions: a longitudinal study on changes in self-management behavior during the COVID-19 pandemic.

BACKGROUND: The outbreak of COVID-19 had a significant impact on routines and continuity of professional care. As frequent users of this professional care, especially for people with chronic diseases this had consequences. Due to barriers in access to healthcare, an even greater appeal was made on the self-management behaviors of this group. In the present study, we aim to investigate the extent to which self-management changed during the recent pandemic, and which factors contributed to these changes. METHODS: The Dutch 'National Panel of people with Chronic Illness or Disability' was used to collect self-reported data of people with at least one chronic disease. Self-management was assessed with the Partners in Health questionnaire at two time points: before the crisis in 2018 and during the second wave of crisis in Autumn 2020. Paired t-tests were used to analyze changes in self-management. Potential associating factors on three levels - patient, organization and environment - were assessed in 2020 and their impact on self-management changes was tested with multinomial logistic regression. RESULTS: Data from 345 panel members was available at two time points. In the majority of people, self-management behaviors were stable (70.7%). About one in seven experienced improved self-management (15.1%), and a similar proportion experienced deteriorated self-management (14.2%). Sex, physical disability, mental health and daily stressors due to COVID-19 (patient level), changes in healthcare access (organization level), and social support (environment level) were significantly associated with experienced changes in self-management. CONCLUSIONS: People with chronic diseases experienced different trajectories of self-management changes during COVID-19. We need to be aware of people who seem to be more vulnerable to a healthcare crisis and report less stable self-management, such as those who experience mental health problems or daily stressors. Continuity of care and social support can buffer the impact of a healthcare crisis on self-management routines of people with chronic diseases.

Information Needs of People With Limited Health Literacy Regarding a New "Opt-Out" Organ Donation System: A Qualitative Study in the Netherlands.

Background: In the Netherlands, new legislation on organ donation was implemented, based on a "opt-out" consent system, which means that all adults are presumed to consent for organ donation, unless they actively register their decision not to donate. A public information campaign preceded the law change. In the Netherlands, 29% of the population has limited health literacy (LHL). The aim of the study was to gain insight in the information needs of Dutch citizens with LHL regarding organ donation and the new legislation, as well as in their preferred information channels. Methods: A qualitative study was performed; 30 people participated in four focus groups and six individual interviews. Transcripts were coded, interviews were thematically analysed. Results: People with LHL need specific information to make an informed decision on organ donation. Relevant topics: 1) choice options, 2) eligibility, 3) role of partner and/or family, 4) impact on quality of care, and 5) process of organ donation. Information should be easy to understand. Conclusion: Current standard materials are too difficult and abstract. People with LHL require personal support to tailor general information to their personal situation, and practical help to actually register their choice. Suggestions on how to improve information is provided.

Assessing the experience of person-centred coordinated care of people with chronic conditions in the Netherlands: Validation of the Dutch P3CEQ.

BACKGROUND: Countries are adapting their health and social care systems to better meet the needs of growing populations with (multiple) chronic conditions. To guide this process, assessment of the 'patient experience' is becoming increasingly important. For this purpose, the Person-Centred Coordinated Care Experience Questionnaire (P3CEQ) was developed in the United Kingdom, and translated into several languages. AIM: This study aimed to assess the internal and construct validity of the Dutch P3CEQ to capture the experience of person-centred coordinated care of people with chronic conditions in the Netherlands. PARTICIPANTS AND METHODS: Adults with chronic conditions (N = 1098) completed the Dutch P3CEQ, measures of health literacy and patient activation, and reported the use and perceived quality of care services. Data analysis included Principal Component and reliability analysis (internal validity), analysis of variance and Student's T-tests (construct validity). RESULTS: The two-component structure found was pretty much the same as in the UK validation study. Sociodemographic correlates also resembled those found in the United Kingdom. Women, persons who were less educated, less health-literate or less activated experienced less person-centred coordinated care. P3CEQ scores correlated positively with general practitioner performance scores and quality ratings of the total care received. CONCLUSION: The Dutch P3CEQ is a valid instrument to assess the experience of person-centred coordinated care among people with chronic conditions in the Netherlands. Awareness of inequity and more attention to communication skills in professional training are needed to ensure that care professionals better recognize the needs of women, lower educated or less health-literate persons, and improve their experiences of care. PATIENT CONTRIBUTION: The P3CEQ has been developed in collaboration with a range of stakeholders. Eighteen persons with (multiple) chronic conditions participated as patient representatives and codesign experts in (four) codesign workshops. Other patient representatives participated in cognitive testing of the English-language instrument. The usability of the P3CEQ to capture the experience of person-centred coordinated care of older persons has been examined by interviewing 228 older European service users, including 13 living in the Netherlands, as part of the SUSTAIN project. More than a thousand persons with chronic conditions participated in the validation study of the Dutch P3CEQ.

Towards a comprehensive, person-centred assessment of health literacy: translation, cultural adaptation and psychometric test of the Dutch Health Literacy Questionnaire.

BACKGROUND: Many health literacy instruments focus on reading skills, numeracy and/or information processing aspects only. In the Netherlands, as in other countries, the need for a comprehensive, person-centred measure of health literacy was observed and consequently the decision was made to translate the Health Literacy Questionnaire (HLQ) into Dutch. The HLQ has nine health literacy domains covering people's experiences and skills. This research sought to translate, culturally adapt and psychometrically test the HLQ. METHODS: The translation and adaptation was done using a systematic approach with forward translation guided by item intents, blind back translation, and a consensus meeting with the developer. The Dutch version of the HLQ was applied in a sample of non-hospitalized, chronically ill patients. Descriptive statistics were generated to describe mean, standard deviation and floor and ceiling effects for all items. A Confirmatory Factor Analysis (CFA) model was fitted to the data. Scores on the nine domains of the HLQ were compared across demographic and illness characteristics as a form of known-groups validity. Psychometric analyses included Cronbach's alpha, item-rest and item-remainder correlations. RESULTS: Using CFA, the Dutch HLQ psychometric structure was found to strongly align with the hypothesised (original) nine independent domains of the English version. The nine scales were found to be highly reliable (all scales had alpha between 0.83 and 0.94). Six of the nine HLQ-scales had items that show ceiling-effects. There were no ceiling effects present at the scale level. Scores on the scales of the HLQ differed according to demographic and illness characteristics: people who were older, lower educated and living alone and patients with multiple chronic diseases generally scored lower. CONCLUSIONS: The Dutch version of the HLQ is a robust and reliable instrument that measures nine different domains of health literacy. The questionnaire was tested in a sample of chronically ill patients, and should be further tested in the general population as well as in different disease groups. The HLQ is a major addition to currently available instruments in the Netherlands, since it measures health literacy from a multi-dimensional perspective and builds on patients' experiences and skills.

Evidence on the effectiveness of health literacy interventions in the EU: a systematic review.

BACKGROUND: In the last decade, the attention for health literacy has increased in the European Union. This is due to three main reasons. First, reviews have shown that inadequate health literacy is associated with worse health outcomes, higher health care use and expenditure. Second, in all European countries the population is aging and the number of chronically ill people is rising. Improving health literacy in this group can offer greater opportunities to take an active part in society, be independent and improve quality of life. Third, since most research on health literacy has been conducted outside Europe and relatively little is known about the development of health literacy interventions and its effects on outcome measures in European countries. The aim of this systematic review was to assess the evidence on the effectiveness of health literacy interventions in the European Union published between 1995 and 2018. METHODS: Searches have been performed in Medline, PubMed, EMBASE, CINAHL, Cochrane library, PsychINFO, ERIC, Web of Science and SCOPUS for publications on health literacy intervention studies in European Union countries. Studies were included if the research was conducted in one or more Member States of the European Union, the publication described an intervention study, the intervention was aimed at health literacy, the publication described an outcome measure related to health literacy and the publication was written in English, French or German. RESULTS: A total of 23 studies were included. Three types of interventions were identified; aimed at improving health literacy, tailored to different health literacy levels and aimed at improving health outcomes in general that differentiated in effects for people with different health literacy levels. Most interventions identified in the review focus on the functional level of health literacy or numeracy. The strength of evidence from the European health literacy intervention studies was low and there was a huge heterogeneity in study design, measurement tools and outcomes measured. CONCLUSIONS: Promising interventions were tailored to the needs of patients, addressing functional, interactive and critical skills and use not difficult animated spoken text. Future research should focus on the development and assessment of such interventions and use stronger designs.

The role of health literacy in explaining the association between educational attainment and the use of out-of-hours primary care services in chronically ill people: a survey study.

BACKGROUND: Low socioeconomic status (SES) is persistently associated with poor health and suboptimal use of healthcare services, and more unplanned healthcare use. Suboptimal use of emergency and acute healthcare services may increase health inequalities, due to late diagnosis or lack of continuity of care. Given that health literacy has been associated with healthcare utilisation and with education attainment, we sought to explore whether health literacy is related to the use of out-of-hours (OOH) Primary Care Services (PCSs). Additionally, we aimed to study whether and to what extent health literacy accounts for some of the association between education and OOH PSC use. METHODS: A survey including measures of education attainment, health literacy (assessed by means of the Dutch version of the nine-dimension Health Literacy Questionnaire) and use of PCS was conducted among a sample of adults diagnosed with (any) somatic chronic condition in the Netherlands (response 76.3%, n = 1811). We conducted linear and logistic regression analyses to examine associations between education level and PCS use in the past year. We performed mediation analyses to assess whether the association between education and PCS use was (partly) explained by different aspects of health literacy. We adjusted the models for patient characteristics such as age and morbidity. RESULTS: Higher education attainment was associated with higher scores on the health literacy aspects Appraisal of health information, and Navigating the healthcare system. Additionally, appraisal and navigating the healthcare system partially accounted for educational differences in PCS use. Finally, higher appraisal of health information scores were associated with higher PCS utilisation. CONCLUSION: Several aspects of health literacy were demonstrated to relate to PCS use, and partly accounted for educational differences herein. Accordingly, developing health literacy within individuals or communities may help to reduce inappropriate PCS use among people with low education.

Disentangling the effect of illness perceptions on health status in people with type 2 diabetes after an acute coronary event.

BACKGROUND: Chronically ill patients such as people with type 2 diabetes develop perceptions of their illness, which will influence their coping behaviour. Perceptions are formed once a health threat has been recognised. Many people with type 2 diabetes suffer from multimorbidity, for example the combination with cardiovascular disease. Perceptions of one illness may influence perceptions of the other condition. The aim of the current study was to evaluate the effect of an intervention in type 2 diabetes patients with a first acute coronary event on change in illness perceptions and whether this mediates the intervention effect on health status. The current study is a secondary data analysis of a RCT. METHODS: Two hundred one participants were randomised (1:1 ratio) to the intervention (n = 101, three home visits) or control group (n = 100). Outcome variables were diabetes and acute coronary event perceptions, assessed with the two separate Brief Illness Perceptions Questionnaires (BIPQs); and health status (Euroqol Visual Analog Scale (EQ-VAS)). The intervention effect was analysed using ANCOVA. Linear regression analyses were used to assess whether illness perceptions mediated the intervention effect on health status. RESULTS: A positive intervention effect was found on the BIPQ diabetes items coherence and treatment control (F = 8.19, p = 0.005; F = 14.01, p < 0.001). No intervention effect was found on the other BIPQ diabetes items consequence, personal control, identity, illness concern and emotional representation. Regarding the acute coronary event, a positive intervention effect on treatment control was found (F = 7.81, p = 0.006). No intervention effect was found on the other items of the acute coronary event BIPQ. Better diabetes coherence was associated with improved health status, whereas perceiving more treatment control was not. The mediating effect of the diabetes perception 'coherence' on health status was not significant. CONCLUSION: Targeting illness perceptions of people with diabetes after an acute coronary event has no effect on most domains, but can improve the perceived understanding of their diabetes. Discussing perceptions prevents people with type 2 diabetes who recently experienced an acute coronary event from the perception that they will lose control of both their diabetes and the acute coronary event. Illness perceptions of diabetes patients should therefore be discussed in the dynamic period after an acute coronary event. TRIAL REGISTRATION: Nederlands trial register; NTR3076 , Registered September 20 2011.

Validity and reliability of a Malay version of the brief illness perception questionnaire for patients with type 2 diabetes mellitus.

BACKGROUND: Illness perceptions involve the personal beliefs that patients have about their illness and may influence health behaviours considerably. Since an instrument to measure these perceptions for Malay population in Malaysia is lacking, we translated and examined the psychometric properties of the Malay version of the Brief Illness Perception Questionnaire (MBIPQ) in adult patients with type 2 diabetes mellitus. METHODS: The MBIPQ has nine items, all use a 0-10 response scale, except the ninth item about causal factors, which is an open-ended item. A standard procedure was used to translate and adapt the English BIPQ into Malay language. Construct validity was examined comparing item scores and scores on the Diabetes Management Self-Efficacy Scale, the Morisky Medication Adherence Scale, the World Health Organization Quality of Life-brief, the 9-item Patient Health Questionnaire, the 17-item Diabetes Distress Scale, HbA1c and the presence of complications. In addition, 2-week and 4-week test-retest reliability were studied. RESULTS: A total of 312 patients completed the MBIPQ. Out of this, 97 and 215 patients completed the 2- or 4-weeks test-retest reliability questionnaire, respectively. Moderate inter-items correlations were observed between illness perception dimensions (r = -0.31 to 0.53). MBIPQ items showed the expected correlations with self-efficacy (r = 0.35), medication adherence (r = 0.29), quality of life (r = -0.17 to 0.31) and depressive symptoms (r = -0.18 to 0.21). People with severe diabetes-related distress also were more concern (t-test = 4.01, p < 0.001) and experienced lower personal control (t-test = 2.07, p = 0.031). People with any diabetes-related complication perceived the consequences as more serious (t-test = 2.04, p = 0.044). The 2-week and 4-week test-retest reliabilities varied between ICCagreement 0.39 to 0.70 and 0.58 to 0.78, respectively. CONCLUSIONS: The psychometric properties of items in the MBIPQ are moderate. The MBIPQ showed good cross-cultural validity and moderate construct validity. Test-retest reliability was moderate. Despite the moderate psychometric properties, the MBIPQ may be useful in clinical practice as it is a useful instrument to elicit and communicate on patient's personal thoughts and feelings. Future research is needed to establish its responsiveness and predictive validity. TRIAL REGISTRATION: ClinicalTrials.gov NCT02730754 registered on March 29, 2016; NCT02730078 registered on March 29, 2016.

Chronic illness self-management: a mechanism behind the relationship between neighbourhood social capital and health?

Background: Neighbourhood social capital might provide resources that can benefit chronic illness self-management. Improved self-management is a possible mechanism behind the relationship between neighbourhood social capital and health of people with chronic illness. Methods: To test this mechanism, we collected data on self-management and self-rated health among a sample of 2091 people with chronic illness in 2013. Data on neighbourhood social capital were collected among 69 336 people in 3425 neighbourhoods between May 2011 and September 2012. A social capital measure was estimated with ecometric measurements. We conducted mediation analyses to examine whether the relationship between neighbourhood social capital and self-rated health was mediated through chronic illness self-management. Results: We found that neighbourhood social capital is related to chronic illness self-management only for people with chronic illness and mild physical disabilities and that, for this group, self-management mediates the relationship between neighbourhood social capital and health. Conclusion: Improved self-management is a mechanism behind the relationship between neighbourhood social capital and health for people with chronic illness and mild physical disabilities. It is possible that the self-management support needs of people with chronic illness with moderate or severe physical disabilities cannot be met by the resources provided in neighbourhoods, but more tailored support is necessary. More research is needed to discover mechanisms behind the relationship between neighbourhood social capital and health and elucidate which resources in neighbourhoods can benefit specific groups of people with chronic illness.

Self-monitoring of health data by patients with a chronic disease: does disease controllability matter?

BACKGROUND: There is a growing emphasis on self-monitoring applications that allow patients to measure their own physical health parameters. A prerequisite for achieving positive effects is patients' willingness to self-monitor. The controllability of disease types, patients' perceived self-efficacy and health problems could play an essential role in this. The purpose of this study is to investigate the relationship between patients' willingness to self-monitor and a range of disease and patient specific variables including controllability of disease type, patients' perceived self-efficacy and health problems. METHODS: Data regarding 627 participants with 17 chronic somatic disease types from a Dutch panel of people with chronic diseases have been used for this cross-sectional study. Perceived self-efficacy was assessed using the general self-efficacy scale, perceived health problems using the Physical Health Composite Score (PCS). Participants indicated their willingness to self-monitor. An expert panel assessed for 17 chronic disease types the extent to which patients can independently keep their disease in control. Logistic regression analyses were conducted. RESULTS: Patients' willingness to self-monitor differs greatly among disease types: patients with diabetes (71.0%), asthma (59.6%) and hypertension (59.1%) were most willing to self-monitor. In contrast, patients with rheumatism (40.0%), migraine (41.2%) and other neurological disorders (42.9%) were less willing to self-monitor. It seems that there might be a relationship between disease controllability scores and patients' willingness to self-monitor. No evidence is found of a relationship between general self-efficacy and PCS scores, and patients' willingness to self-monitor. CONCLUSIONS: This study provides the first evidence that patients' willingness to self-monitor might be associated with disease controllability. Further research should investigate this association more deeply and should focus on how disease controllability influences willingness to self-monitor. In addition, since willingness to self-monitor differed greatly among patient groups, it should be taken into account that not all patient groups are willing to self-monitor.

Associations Between Neighborhood Social Capital, Health Literacy, and Self-Rated Health Among People With Chronic Illness.

Health literacy skills are important for health and self-management for people with chronic illness. Neighborhood social capital can provide resources, such as access to information and informal social control over unhealthy behavior. The benefit of these resources, and the access people have to these resources, might depend on levels of health literacy. We investigated whether neighborhood social capital is differentially related to the health of people with chronic illness according to health literacy skills. This study focused on health literacy skills in 4 domains related to the ability to access and understand health information and to the ability to perform self-management. We found a significant positive interaction between social capital and health literacy skills for accessing and understanding health information. This suggests that health literacy enhances people's ability to gain access to and use neighborhood resources to benefit health. There was no interaction effect between social capital and health literacy skills in the other 2 domains. More research is needed to investigate how people with chronic illness can benefit from knowledge, support, and other social resources for health and self-management also whether they have limited health literacy skills.

Patient-perceived self-management tasks and support needs of people with chronic illness: generic or disease specific?

BACKGROUND: Self-management is widely accepted as an essential component of chronic care. Nevertheless, little is known about patients' perceptions of self-management. PURPOSE: This study aims to explore which self-management tasks and support needs people with chronic illness perceive for themselves, and to establish whether these tasks and support needs are disease specific. METHODS: A nationwide representative sample of 2,064 people with chronic disease filled in the Patient Assessment of Self-management Tasks questionnaire. RESULTS: Many respondents perceive self-management tasks in the daily management of their condition, although few indicate a need for support. Respondents who feel a need for support in one aspect of self-management are likely to feel a need for support in other aspects as well. Type of disease has a small effect on self-management tasks and even smaller on support needs. CONCLUSION: Although the self-management tasks patients perceive may be partly disease specific, self-management support does not necessarily need to be disease specific.

Participation of chronic patients in medical consultations: patients' perceived efficacy, barriers and interest in support.

AIMS: Chronic patients are increasingly expected to participate actively in medical consultations. This study examined (i) patients' perceived efficacy and barriers to participation in consultations, (ii) patients' interest in communication support and (iii) correlates of perceived efficacy and barriers, with an emphasis on differences across providers' disciplines. METHODS: A representative panel of chronic patients (n = 1314) filled out the short Perceived Efficacy in Patient-Provider Interaction scale and were questioned about barriers to participation and interest in communication support. Potential correlates included socio-demographic (age, sex, education, living situation), clinical (discipline care provider, type of illness, comorbidity, illness duration, functional disabilities, health consultations in last year) and personal characteristics (information preference, health literacy, level of general patient activation). RESULTS: Most patients felt efficacious in consultations, although 46% reported barriers to participation and 39% had an interest in support. Barriers most frequently recognized were 'not wanting to be bothersome', 'perception there is too little time' and 'remembering subjects only afterwards'. Patients most frequently endorsed relatively simple support. Patients perceived the least barriers and were least likely to endorse support when seeing a nurse. In multivariate models, consistent risk factors for low efficacy and perceived barriers were low health literacy and a low general patient activation. CONCLUSIONS: Many chronically ill patients feel confident in medical interactions. Still, a significant number might benefit from support. Often this concerned more generally vulnerable patients, that is, the low literate and generally less activated. Relatively simple supportive interventions are likely to be endorsed and might overcome frequent barriers.

Clinicians' beliefs and attitudes toward patient self-management in the Netherlands; translation and testing of the American Clinician Support for Patient Activation Measure (CS-PAM).

BACKGROUND: The aim of this study was to test the Dutch version of the Clinician Support for Patient Activation Measure (CS-PAM), to explore the beliefs of Dutch clinicians about patients' self-management, and to establish whether there are differences in this respect between general practitioners and other primary care providers. METHODS: The CS-PAM was translated in Dutch and data were collected in a sample of 489 general practitioners and other primary care providers. Statistical analyses (RASCH, Cronbach's α) were performed to establish the psychometric properties of the instrument. RESULTS: The psychometric scores of the Dutch CS-PAM were acceptable to good, and the difficulty level and structure was comparable to that of the original instrument. The average score of Dutch clinicians on the CS-PAM was 65.1 (SD 10.7), somewhat lower compared to their colleagues in the US (69; SD 12.1) and the UK (69, SD 12.8). Dutch general practitioners scored significantly lower on the CS-PAM compared to other primary care providers. CONCLUSIONS: The Dutch CS-PAM is a reliable instrument to measure beliefs of clinicians regarding patient self-management. Further validation studies are necessary to establish the distribution of scores in specific provider populations and to assess the clinical relevance of the instrument for different outcomes.

Individual care plans for chronically ill patients within primary care in the Netherlands: Dissemination and associations with patient characteristics and patient-perceived quality of care.

OBJECTIVE: To examine the use of individual care plans (ICPs) within primary chronic illness care in the Netherlands, and to explore the relationships between ICP use, patient characteristics, and patient-perceived quality of care. DESIGN: Cross-sectional study using survey data from a panel of chronically ill patients and medical registration data provided by their general practices. SETTING AND SUBJECTS: A sample of 1377 patients with somatic chronic disease(s) randomly selected in general practices throughout the Netherlands, supplemented with a sample of 225 COPD patients, also recruited from general practices. MAIN OUTCOME MEASURES: (i) Percentage of ICP use based on self-report by chronically ill patients, and (ii) patient-perceived quality of care as assessed using the Patient Assessment of Chronic Illness Care (PACIC). RESULTS: ICP use among the total generic sample was low (9%), but slightly higher (13%) among patients diagnosed with diabetes or COPD, diseases for which disease management programmes have been set up in the Netherlands. Patients with a low educational level and patients with poor(er) self-rated health were more likely to have an ICP. Compared with patients without an ICP, patients with an ICP more often reported that the care they received was patient-centred, proactive, planned, and included collaborative goal setting, problem-solving, and follow-up support. CONCLUSION AND IMPLICATIONS: Findings reveal a discrepancy between practice and policy aspirations regarding ICP use in primary chronic illness care. More research is needed to gain insight into the effectiveness of ICPs to improve the quality of chronic illness care in various patient populations.

Living with diabetes: a group-based self-management support programme for T2DM patients in the early phases of illness and their partners, study protocol of a randomised controlled trial.

BACKGROUND: The present article presents the protocol for a randomised controlled trial to test the effectiveness of a group-based self-management support programme for recently diagnosed type 2 diabetes mellitus (T2DM) patients (one to three years post-diagnosis) and their partners. The course aims to support T2DM patients and their partners in successfully integrating diabetes care into their daily lives and hereby enhance self-management and diabetes-specific health-related quality of life. The content of the course is based on the Common-Sense Model of Self-Regulation (CSM). Furthermore, principles from the Social Cognitive Theory (SCT) and social support theories are integrated. METHODS/DESIGN: We aim to recruit 160 recently diagnosed T2DM patients and their partners from general practices in six different regions in the Netherlands. Patients need to be diagnosed with T2DM for one to three years and have to experience some degree of diabetes-related difficulties, as measured with a three-item screener. Participating patients and their partners are randomly allocated to the intervention or control condition. Participants in the intervention condition receive three monthly group sessions and a booster session three months later. Participants in the control condition receive a single information meeting. Data will be collected at baseline (T0), directly after the programme (T1) and six months post-programme (T2), including: self-management, diabetes-specific health-related quality of life, illness perceptions, attitudes, social support and empowerment. A three-level multilevel model will be used to compare change-scores between the conditions (intervention/control) on each outcome. DISCUSSION: Our study will be the first to determine whether a group-based support programme based on the CSM is effective in enhancing self-management and diabetes-specific health-related quality of life in recently diagnosed T2DM patients. The important role of patients' partners in effective diabetes care is also acknowledged in the study. TRIAL REGISTRATION: Netherlands National Trial Register (NTR) NTR3302.

Perceived quality of life in chronic obstructive pulmonary disease patients: a cross-sectional study in primary care on the role of illness perceptions.

BACKGROUND: Previous research has shown that in Chronic Obstructive Pulmonary Disease (COPD) patients, it is important to consider not only physical functioning and complaints but also psychological factors, such as illness perceptions, to explain differences in Health-Related Quality of Life (HRQoL). The objective of this study is to analyse the extent to which the specific dimensions of illness perceptions according to the Common Sense Model (corrected for airflow limitation, dyspnoea and comorbidities) contribute to HRQoL. METHOD: In a cross-sectional study in primary care, 90 COPD patients completed questionnaires: The Brief Illness Perception Questionnaire, the Medical Research Council dyspnoea scale, the Clinical COPD Questionnaire (CCQ) and the Chronic Respiratory Questionnaire (CRQ). Analyses were performed with multiple linear regression. RESULTS: When corrected for confounders (airflow limitation, dyspnoea and comorbidities), identity (ß = .42) and comprehensibility (ß = -.16) were associated with HRQoL (CCQ). Identity, comprehensibility and dyspnoea explained 56% of the variation in HRQoL (R2 = .56). Consequences (ß = -.50) and treatment control (ß = .20) were associated with HRQoL (the CRQ's physical domain). They explained 59% of the variation in the CRQ physical (R2 = .59) domain. Treatment control (ß = .19) and emotional response (ß = -.33) were associated with the CRQ emotional domain. CONCLUSIONS: Patients who experience fewer symptoms attributed to COPD, who have a better understanding of the disease, who experience less impact of COPD in daily life, who experience better treatment control and who have less of an emotional response have better HRQoL. This study indicates that the HRQoL of COPD patients is associated with illness perceptions as well as with the severity of dyspnoea as experienced by patients. Airflow limitation measures or comorbidities do not add to the explanation of HRQoL. The results of this study provide starting points for the development of interventions focusing on illness perceptions to support COPD patients in their disease management and to improve HRQoL.

Contextual factors for the successful implementation of self-management interventions for chronic diseases: A qualitative review of reviews.

OBJECTIVES: To identify and describe the most relevant contextual factors (CFs) from the literature that influence the successful implementation of self-management interventions (SMIs) for patients living with type 2 diabetes mellitus, obesity, COPD and/or heart failure. METHODS: We conducted a qualitative review of reviews. Four databases were searched, 929 reviews were identified, 460 screened and 61 reviews met the inclusion criteria. CFs in this paper are categorized according to the Tailored Implementation for Chronic Diseases framework. RESULTS: A great variety of CFs was identified on several levels, across all four chronic diseases. Most CFs were on the level of the patient, the professional and the interaction level, while less CFs were obtained on the level of the intervention, organization, setting and national level. No differences in main themes of CFs across all four diseases were found. DISCUSSION: For the successful implementation of SMIs, it is crucial to take CFs on several levels into account simultaneously. Person-centered care, by tailoring SMIs to patients' needs and circumstances, may increase the successful uptake, application and implementation of SMIs in real-life practice. The next step will be to identify the most important CFs according to various stakeholders through a group consensus process.