Disease Management Interventions for Heart Failure

Disease Management Interventions for Heart Failure

Patricia H Strachan,2 David R Thompson,3 Kay Currie4

▸ Additional material is published online only. To view please visit the journal online (http://dx.doi.org/10.1136/ heartjnl-2013-304852). 1Faculty of Nursing, University of Alberta, Edmonton, Canada 2School of Nursing, McMaster University, Hamilton, Canada 3Faculty of Health Sciences, Australian Catholic University, Melbourne, Australia 4School of Health, Glasgow Caledonian University, Glasgow, Scotland

Correspondence to Professor Alexander M Clark, Faculty of Nursing, University of Alberta, 11405-87 Avenue, Edmonton, Alberta, Canada T6G 1C9; [email protected]

Received 26 August 2013 Revised 7 January 2014 Accepted 17 January 2014 Published Online First 18 February 2014

To cite: Clark AM, Spaling M, Harkness K, et al. Heart 2014;100: 716–721.

ABSTRACT Context

Disease management interventions for heart failure (HF) are inconsistent and very seldom incorporate the views and needs of patients and their caregivers into intervention design. Objective and data To improve intervention effectiveness and consistency, a systematic review identified 49 studies which examined the views and needs of patients with HF and their caregivers about the nature and determinants of effective HF self-care. Results The findings identify key drivers of effective self-care, such as the capacity of patients to successfully integrate self-care practices with their preferred normal daily life patterns and recognise and respond to HF symptoms in a timely manner. Conclusions Future interventions for HF self-care must involve family members throughout the intervention and harness patients’ normal daily routines.

BACKGROUND

Heart failure (HF) self-care matters, but what matters most in HF self-care? Reducing the immense and growing burden of HF depends as much or more on promoting effective self-care and disease management as on medicines.1–3 Yet, attaining proficiency in HF self-care is difficult—it involves patients becoming adept in a very wide range of skills across multiple domains on a daily basis.1 2 These include monitoring weight objectively every day, adhering to a complex medication regimen, ensuring fluid restriction and management, and engaging in behaviours related to fluid intake, diet, physical activity, symptom monitoring and help-seeking.

Disease Management Interventions for Heart Failure

Interventions to promote effective HF self-care have been somewhat successful but are often inconsistent. Beyond the wide scope and complexities of HF self-care, this is likely because HF self-care interventions are them- selves complex, diverse, and often vaguely described,15 have different effects in different populations and may be confounded in trials with pharmacological regimen. More effort needs to be devoted to understanding HF self-care prior to interventions being evaluated via randomised trials.17 Indeed, the Medical Research Council Framework for the Design and Evaluation of Complex Interventions suggests that ‘user perspectives’ are valuable and vital to incorporate into intervention design before formal evaluation via trials.18 The rationale for this recommendation is to increase the responsiveness of the intervention to the actual needs as opposed to the

anticipated needs of the patient and thereby improve the overall effectiveness of the intervention. Yet, there is evidence that HF self-care interventions are seldom based on data relating to patients’ perceptions of their own needs.19 Families, particularly spouses/partners, though frequently involved in daily self-care, have been consistently excluded from almost all past HF interventions.

Knowledge of patients and caregivers has then rarely been incorporated into the design and content of interventions evaluated in past studies.

To inform the design of future interventions and promote effective HF self-care, a systematic review of qualitative studies was performed to examine patients’ and caregivers’ needs, experiences and preferences regarding the nature and determinants of HF self-care.

METHODS

As this study was focused on the complex factors and processes that influence self-care rather than preidentified predictors of self-care, qualitative research studies were the focus of this review. Qualitative systematic review has been used to understand various aspects of health around disease management and, importantly, is not dependent on using studies that self-identify (eg, via titles and abstracts) as being related only to ‘self-care’. This is vital when reviewing qualitative research of HF because studies are often framed in general terms (eg, ‘patient experiences’) but may contain themes and data relating to HF ‘self-care’. As both patients and caregivers are involved in self-care and supported by healthcare professionals, studies including and pertaining to each were included. HF self-care was defined in the review as ‘the decisions and strategies undertaken by the individual in order to maintain life, healthy functioning and well being.’ To support consistent interpretation between the research team, data or themes were interpreted to be relevant if: findings related to any process, phenomena, or construct that pertains to the self-care of HF in patients or support of self-care by lay caregivers.

Study selection To be included in this review, studies had to report primary qualitative data wholly or as part of mixed methods design, contain population-specific data or themes from adults (18 or older) reasonably seen to pertain to HF self-care, and be published as full papers/theses during or after 1995.

Disease Management Interventions for Heart Failure

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716 Clark AM, et al. Heart 2014;100:716–721. doi:10.1136/heartjnl-2013-304852

Systematic review

strategy combined general and specific terms relating to HF and qualitative design and was used to search the following data- bases until 19 March 2012: Ovid MEDLINE, Ovid EMBASE, Ovid PsycINFO, CSA Sociological Abstracts, Ovid AARP Ageline, EBSCO Academic Search Complete, EBSCO CINAHL, EBSCO SocINDEX, ISI Web of Science and Scopus. We also searched Proquest Dissertations and Theses database, scanned reference lists of recent papers, and consulted with colleagues. Only English papers were included due to lack of resources for translation. All papers identified by the systematic search were screened for relevancy first by their titles/abstract. Papers which appeared to be potentially relevant were then full-text screened against the inclusion criteria.

Meta-synthesis was used to provide a new account of the phenomena being explored and involved studies were reanalysed and compared with each other to produce new theories or knowledge. A four-stage approach was used to synthesise the data. First, studies were read fully and data/themes extracted verbatim in relation to findings pertaining to the nature or determinants of HF self-care across all domains of HF self-care. Data from the studies were extracted into the Joanna Briggs Institute software for systematic review (Qualitative Appraisal and Review Instrument) and then analysed for common themes taking account of the nature and quality of the component studies. This approach has been described more fully in past reviews to understand cardiac patient perspectives, including previous reviews of people with heart disease and HF.

The quality of all included studies was assessed using the criteria from the Critical Appraisal Skills Programme (CASP) Qualitative Appraisal Tool. Studies were ranked, based on the CASP Tool criteria, as low, moderate or high quality, but were not excluded on the basis of quality. Both screening and quality appraisal involved independent assessment by two reviewers and disagreements were resolved by discussion among the research team. Multiple publications of the same study populations were included as independent studies as the publications contained varying themes and findings related to the self-care of HF; however, the descriptions of the study populations for these papers were only included once.

Disease Management Interventions for Heart Failure

RESULTS

Search results Of 1421 papers identified (figure 1), 63 papers met the criteria for inclusion in the meta-synthesis. A subset of these themes, representing 49 studies, is presented in this review of self-care needs (see online supplementary table S1). Studies involved: 1446 patients (214 sex not reported; 596 women; 636 men; mean age 65.6, range 25–98 years), 186 caregivers and 63 health professionals. With some exceptions, populations were predominantly Caucasian and urban dwelling. Over half the studies were conducted in the USA (n=28). Overall, the study quality was moderate (n=27) with common study weaknesses being superficial analyses of themes, over-reliance on convenience sampling and insufficient description of sample characteristics (see online supplementary table S1).

Review findings Key limitation affecting self-care: basic HF self-care knowledge deficits still exist Achieving effective HF self-care was widely seen to be very challenging to patients mostly due to difficulties remembering: what self-care behaviours were important or appropriate to do, and the harmful effects and uncontrollability of symptoms.

Though studies were from different countries and time periods, the studies consistently indicated the wide prevalence of fundamental gaps in patient and caregiver knowledge and understanding about HF self-care. Participants demonstrated or reported a low knowledge of HF, or lack of understanding of self-care:

▸ Lack of recall about basic elements of the nature of HF

▸ Apparent misattribution of HF symptoms to other conditions, age or medications

▸ Low understanding of the links between signs or symptoms of HF or the heart

▸ Absence of references to the importance of weight management or monitoring

▸ Avoidance or low awareness of the severity of HF. Some studies specifically identified that patients’ capacity to engage in effective HF self-care was reduced by low knowledge generally or in relation to particular domains of self-care, including:

▸ Sodium reduction

▸ Medication adherence

▸ Weight monitoring

▸ Physical activity.

A lack of knowledge was perceived to contribute to confusion, delays in help-seeking, uncertainty over future illness trajectory and how to self-care. There was little evidence from the studies that patients recognised these challenges existed. General misconceptions and low knowledge of HF symptoms were seen to contribute to ineffective self-care.

For example, some patients did not understand that sodium is salt, and despite reporting limited intake of salt, failed to restrict sodium. Consequently, health professionals could view patients as non-adherent even though patients reported practices they believed to align with recommendations.

Key contextual factor affecting self-care: HF self-care is shared Informal or lay caregivers, usually spouses/partners, were very frequently cited as contributing daily and positively to patients’ HF self-care.

Caregiver support was seen to facilitate adherence,34 especially during times of symptom exacerbation (when adherence may be most critical), when caregivers could play a more prominent role in self-care.

Caregiver actions around self-care often responded to patient wellness and capacities. Hence, caregivers’ contributions ranged widely from promoting patient independence to assisting with basic needs.19 61 Irrespective of patient wellness, caregivers reported constant, yet ‘invisible’ observation and assessment of the patient.19 Over time, caregivers could develop a repertoire of subtle cues that signalled fluctuations in patients’ conditions; for example, changes in pallor or mood reflected alterations in patient wellness, which the patient or providers did not seem to recognise. Although the types of support provided by care- givers ranged substantially, they most frequently facilitated two aspects of self-care:

▸ Medication management

Disease Management Interventions for Heart Failure