Nini H. Jonkman

Self-management: One size does not fit all

Self-management for people with chronic diseases is now widely recognized as an essential part of treatment. Despite the high expectations and the growing body of evidence in terms of its effectiveness, a wide application of self-management programs is inhibited due to several challenges. Worldwide, a variety of complex and multifactorial interventions have been evaluated in very heterogeneous patient populations leaving healthcare professionals in doubt about what works best and what works in whom. In this letter to the editor the authors systematically reflect on the current evidence of patient-specific determinants of success of self-management and argument the urge for increased scientific efforts to establish tailored self-management in patients with chronic disease.

Do Self-Management Interventions Work in Patients With Heart Failure? An Individual Patient Data Meta-Analysis

Background— Self-management interventions are widely implemented in the care for patients with heart failure (HF). However, trials show inconsistent results, and whether specific patient groups respond differently is unknown. This individual patient data meta-analysis assessed the effectiveness of self-management interventions in patients with HF and whether subgroups of patients respond differently. Methods and Results— A systematic literature search identified randomized trials of self-management interventions. Data from 20 studies, representing 5624 patients, were included and analyzed with the use of mixed-effects models and Cox proportional-hazard models, including interaction terms. Self-management interventions reduced the risk of time to the combined end point of HF-related hospitalization or all-cause death (hazard ratio, 0.80; 95% confidence interval [CI], 0.71–0.89), time to HF-related hospitalization (hazard ratio, 0.80; 95% CI, 0.69–0.92), and improved 12-month HF-related quality of life (standardized mean difference, 0.15; 95% CI, 0.00–0.30). Subgroup analysis revealed a protective effect of self-management on the number of HF-related hospital days in patients <65 years of age (mean, 0.70 versus 5.35 days; interaction P=0.03). Patients without depression did not show an effect of self-management on survival (hazard ratio for all-cause mortality, 0.86; 95% CI, 0.69–1.06), whereas in patients with moderate/severe depression, self-management reduced survival (hazard ratio, 1.39; 95% CI, 1.06–1.83, interaction P=0.01). Conclusions— This study shows that self-management interventions had a beneficial effect on time to HF-related hospitalization or all-cause death and HF-related hospitalization alone and elicited a small increase in HF-related quality of life. The findings do not endorse limiting self-management interventions to subgroups of patients with HF, but increased mortality in depressed patients warrants caution in applying self-management strategies in these patients.

Characteristics of effective self-management interventions in patients with COPD: individual patient data meta-analysis

It is unknown whether heterogeneity in effects of self-management interventions in patients with chronic obstructive pulmonary disease (COPD) can be explained by differences in programme characteristics. This study aimed to identify which characteristics of COPD self-management interventions are most effective. Systematic search in electronic databases identified randomised trials on self-management interventions conducted between 1985 and 2013. Individual patient data were requested for meta-analysis by generalised mixed effects models. 14 randomised trials were included (67% of eligible), representing 3282 patients (75% of eligible). Univariable analyses showed favourable effects on some outcomes for more planned contacts and longer duration of interventions, interventions with peer contact, without log keeping, without problem solving, and without support allocation. After adjusting for other programme characteristics in multivariable analyses, only the effects of duration on all-cause hospitalisation remained. Each month increase in intervention duration reduced risk of all-cause hospitalisation (time to event hazard ratios 0.98, 95% CI 0.97–0.99; risk ratio (RR) after 6 months follow-up 0.96, 95% CI 0.92–0.99; RR after 12 months follow-up 0.98, 95% CI 0.96–1.00). Our results showed that longer duration of self-management interventions conferred a reduction in all-cause hospitalisations in COPD patients. Other characteristics are not consistently associated with differential effects of self-management interventions across clinically relevant outcomes. Increasing duration of self-management interventions reduces risk of all-cause hospitalisations in patients with COPD http://ow.ly/YVw9E

What Are Effective Program Characteristics of Self-Management Interventions in Patients With Heart Failure? An Individual Patient Data Meta-analysis

BACKGROUND To identify those characteristics of self-management interventions in patients with heart failure (HF) that are effective in influencing health-related quality of life, mortality, and hospitalizations. METHODS AND RESULTS Randomized trials on self-management interventions conducted between January 1985 and June 2013 were identified and individual patient data were requested for meta-analysis. Generalized mixed effects models and Cox proportional hazard models including frailty terms were used to assess the relation between characteristics of interventions and health-related outcomes. Twenty randomized trials (5624 patients) were included. Longer intervention duration reduced mortality risk (hazard ratio 0.99, 95% confidence interval [CI] 0.97-0.999 per month increase in duration), risk of HF-related hospitalization (hazard ratio 0.98, 95% CI 0.96-0.99), and HF-related hospitalization at 6 months (risk ratio 0.96, 95% CI 0.92-0.995). Although results were not consistent across outcomes, interventions comprising standardized training of interventionists, peer contact, log keeping, or goal-setting skills appeared less effective than interventions without these characteristics. CONCLUSION No specific program characteristics were consistently associated with better effects of self-management interventions, but longer duration seemed to improve the effect of self-management interventions on several outcomes. Future research using factorial trial designs and process evaluations is needed to understand the working mechanism of specific program characteristics of self-management interventions in HF patients.

Towards tailoring of self-management for patients with chronic heart failure or chronic obstructive pulmonary disease: a protocol for an individual patient data meta-analysis.

Introduction Self-management interventions in patients with chronic conditions have received increasing attention over the past few years, yet the meta-analyses encountered considerable heterogeneity in results. This suggests that the effectiveness of self-management interventions must be assessed in the context of which components are responsible for eliciting the effect and in which subgroups of patients the intervention works best. The aim of the present study is to identify condition-transcending determinants of success of self-management interventions in two parallel individual patient data meta-analyses of self-management trials in patients with congestive heart failure (CHF) and in patients with chronic obstructive pulmonary disease (COPD). Methods and analysis Investigators of 53 randomised trials (32 in CHF and 21 in COPD) will be requested to share their de-identified individual patient data. Data will be analysed using random effects models, taking clustering within studies into account. Effect modification by age, sex, disease severity, symptom status, comorbid conditions and level of education will be assessed. Sensitivity analyses will be conducted to assess the robustness of the findings. Ethics and dissemination The de-identified individual patient data are used only for the purpose for which they were originally collected and for which ethical approval has been obtained by the original investigators. Knowledge on the effective ingredients of self-management programmes and identification of subgroups of patients in which those interventions are most effective will guide the development of evidence-based personalised self-management interventions for patients with CHF and COPD as well as with other chronic diseases. Trial registration number PROSPERO: CRD42013004698.

Tailoring of self-management interventions in patients with heart failure.

The effectiveness of heart failure (HF) self-management interventions varies within patients suggesting that one size does not fit all. It is expected that effectiveness can be optimized when interventions are tailored to individual patients. The aim of this review was to synthesize the literature on current use of tailoring in self-management interventions and patient characteristics associated with self-management capacity and success of interventions, as building blocks for tailoring. Within available trials, the degree to which interventions are explicitly tailored is marginal and often limited to content. We found that certain patient characteristics that are associated with poor self-management capacity do not influence effectiveness of a given intervention (i.e., age, gender, ethnicity, disease severity, number of comorbidities) and that other characteristics (low: income, literacy, education, baseline self-management capacity) in fact are indicators of patients with a high likelihood for success. Increased scientific efforts are needed to continue unraveling success of self-management interventions and to validate the modifying impact of currently known patient characteristics.

Identifying components of self-management interventions that improve health-related quality of life in chronically ill patients: Systematic review and meta-regression analysis.

OBJECTIVE To quantify diversity in components of self-management interventions and explore which components are associated with improvement in health-related quality of life (HRQoL) in patients with chronic heart failure (CHF), chronic obstructive pulmonary disease (COPD), or type 2 diabetes mellitus (T2DM). METHODS Systematic literature search was conducted from January 1985 through June 2013. Included studies were randomised trials in patients with CHF, COPD, or T2DM, comparing self-management interventions with usual care, and reporting data on disease-specific HRQoL. Data were analysed with weighted random effects linear regression models. RESULTS 47 trials were included, representing 10,596 patients. Self-management interventions showed great diversity in mode, content, intensity, and duration. Although self-management interventions overall improved HRQoL at 6 and 12 months, meta-regression showed counterintuitive negative effects of standardised training of interventionists (SMD=-0.16, 95% CI: -0.31 to -0.01) and peer interaction (SMD=-0.23, 95% CI: -0.39 to 0.06) on HRQoL at 6 months. CONCLUSION Self-management interventions improve HRQoL at 6 and 12 months, but interventions evaluated are highly heterogeneous. No components were identified that favourably affected HRQoL. Standardised training and peer interaction negatively influenced HRQoL, but the underlying mechanism remains unclear. PRACTICE IMPLICATIONS Future research should address process evaluations and study response to self-management on the level of individual patients.

Do self-management interventions in COPD patients work and which patients benefit most? An individual patient data meta-analysis

Background Self-management interventions are considered effective in patients with COPD, but trials have shown inconsistent results and it is unknown which patients benefit most. This study aimed to summarize the evidence on effectiveness of self-management interventions and identify subgroups of COPD patients who benefit most. Methods Randomized trials of self-management interventions between 1985 and 2013 were identified through a systematic literature search. Individual patient data of selected studies were requested from principal investigators and analyzed in an individual patient data meta-analysis using generalized mixed effects models. Results Fourteen trials representing 3,282 patients were included. Self-management interventions improved health-related quality of life at 12 months (standardized mean difference 0.08, 95% confidence interval [CI] 0.00–0.16) and time to first respiratory-related hospitalization (hazard ratio 0.79, 95% CI 0.66–0.94) and all-cause hospitalization (hazard ratio 0.80, 95% CI 0.69–0.90), but had no effect on mortality. Prespecified subgroup analyses showed that interventions were more effective in males (6-month COPD-related hospitalization: interaction P=0.006), patients with severe lung function (6-month all-cause hospitalization: interaction P=0.016), moderate self-efficacy (12-month COPD-related hospitalization: interaction P=0.036), and high body mass index (6-month COPD-related hospitalization: interaction P=0.028 and 6-month mortality: interaction P=0.026). In none of these subgroups, a consistent effect was shown on all relevant outcomes. Conclusion Self-management interventions exert positive effects in patients with COPD on respiratory-related and all-cause hospitalizations and modest effects on 12-month health-related quality of life, supporting the implementation of self-management strategies in clinical practice. Benefits seem similar across the subgroups studied and limiting self-management interventions to specific patient subgroups cannot be recommended.

Complex self-management interventions in chronic disease unravelled: a review of lessons learned from an individual patient data meta-analysis

OBJECTIVES Meta-analyses using individual patient data (IPD) rather than aggregated data are increasingly applied to analyze sources of heterogeneity between trials and have only recently been applied to unravel multicomponent, complex interventions. This study reflects on methodological challenges encountered in two IPD meta-analyses on self-management interventions in patients with heart failure or chronic obstructive pulmonary disease. STUDY DESIGN AND SETTING Critical reflection on prior IPD meta-analyses and discussion of literature. RESULTS Experience from two IPD meta-analyses illustrates methodological challenges. Despite close collaboration with principal investigators, assessing the effect of characteristics of complex interventions on the outcomes of trials is compromised by lack of sufficient details on intervention characteristics and limited data on fidelity and adherence. Furthermore, trials collected baseline variables in a highly diverse way, limiting the possibilities to study subgroups of patients in a consistent manner. Possible solutions are proposed based on lessons learnt from the methodological challenges. CONCLUSION Future researchers of complex interventions should pay considerable attention to the causal mechanism underlying the intervention and conducting process evaluations. Future researchers on IPD meta-analyses of complex interventions should carefully consider their own causal assumptions and availability of required data in eligible trials before undertaking such resource-intensive IPD meta-analysis.

Zelfmanagement bij chronische ziekten

SamenvattingTrappenburg J, Jonkman N, Jaarsma T, Van Os-Medendorp H, Kort H, De Wit N, Hoes A, Schuurmans M. Zelfmanagement bij chronische ziekten. Huisarts Wet 2014;57(3):120–4. Zelfmanagement is trendy: algemeen is het een erkend onderdeel van de behandeling van chronische aandoeningen en de verwachtingen zijn torenhoog. Toch stuit brede invoering van zelfmanagementprogramma’s op beletsels. Er is veel wetenschappelijk onderzoek gedaan, maar er is nog geen eenduidig bewijs voor de effectiviteit van zelfmanagementprogramma’s, onder andere door grote verschillen in terminologie. Er zijn zeker indicaties dat zelfmanagement potentie heeft, maar lang niet alle patiënten reageren op de interventies. De variatie tussen programma’s en patiëntenpopulaties is enorm en daardoor is moeilijk te bepalen wat nu precies werkt en bij wie. De begripsverwarring, ook bij zorgverleners, beleidmakers en publiek, herbergt het risico dat ‘zelfmanagement’ een nietszeggend containerbegrip wordt.Deze beschouwing verduidelijkt de terminologie en evalueert de bewijskracht voor de effectiviteit van zelfmanagementprogramma’s. Overduidelijk is dat niet alle patiënten profiteren van de huidige one-size-fits-all-benadering. Er is dus behoefte aan zorg-opmaat, afgestemd op de individuele patiënt. Dat vergt nader onderzoek naar de succesfactoren: welk type interventie, met welke inhoud, in welke vorm en in welke intensiteit is het kansrijkst bij welk type patiënt? Het onderzoeksconsortium Tailored Self-management & Ehealth (TASTE) probeert deze factoren systematisch te ontrafelen en op maat gesneden interventies te ontwikkelen. Vooralsnog doen eerstelijnszorgverleners er goed aan, de geschiktheid van een zelfmanagementinterventie voor iedere patiënt goed af te wegen.AbstractTrappenburg JCA, Jonkman N, Jaarsma T, Van Os-Medendorp H, Kort H, De Wit NJ, Hoes AW, Schuurmans M. Self-management and chronic disease. Huisarts Wet 2014;57(3):120–4. Self-management is trendy: it is a recognized component of the treatment of chronic disorders and expectations are high. Even so, there are barriers to the introduction of self-managements programmes. Despite considerable research, there is still no hard evidence of the efficacy of self-management programmes, in part because of differences in terminology. There are indications that self-management has potential, but not all patients respond to these interventions. Differences between programmes and patient populations make it difficult to establish which programme works for which patient group. Terminological confusion, also among care providers, policy makers, and the public, harbours the risks that ‘self-management’ may become a meaningless concept.This article clarifies terminology and evaluates the strength of evidence for the efficacy of self-management programmes. It is clear that not all patients benefit from the ‘one size fits all’ approach and that there is a need for tailored care, based on the individual patient. This requires further investigation of determinants of success; which type of intervention, and with what content, form, and intensity, has the great est likelihood of success in specific patient groups. The research consortium Tailored Self-management & Ehealth (TASTE) is trying to unravel these factors and to develop tailored interventions. For the moment, primary care practitioners would do well to evaluate the suitability of self-management programmes for individual patients.