Self-management interventions to improve skin care for pressure ulcer prevention in people with spinal cord injuries: a systematic review protocol

A pressure ulcer is an area of skin and tissue damage that is caused by sitting or lying for too long on one part of the body or by the combination of pressure and strain on the skin during certain body movements. They usually occur over a bony prominence [1, 2] and are also referred to as ‘pressure sores’, ‘pressure injuries’, ‘bed sores’, and ‘decubitus ulcers’. They are one of the most common secondary complications for people with a spinal cord injury (SCI) [3, 4]. They occur in 30–85 % of patients during the first month of injury [1], and 85 % of individuals with SCI are likely to experience a pressure ulcer during their lifetime [5]. A large community survey in Canada found that 15 % of people with SCI had experienced two or more pressure ulcers in the last 12 months [6, 7].

The average cost of managing one pressure ulcer in a community-dwelling person with SCI in Ontario has been estimated at CAD $4745 per month [8], with hospital admission costs contributing most significantly (62 %) to these costs. The occurrence of a pressure ulcer often results in a costly cycle of recurrent hospitalizations, surgeries, clinic visits, and home health care needs [9]. They have been found to have a significant effect on physical, social, psychological, and financial aspects of health-related quality of life in people with a SCI [10, 11].

Efforts are underway to improve the prevention and management of pressure ulcers in clinical settings [11–15]. Less attention has been given to the promotion of skin care behaviours in community-dwelling patients with a SCI, despite this being where a large proportion of pressure ulcers develop and worsen. Recommended skin care includes behaviours such as redistributing the loads on the soft tissues (e.g. pressure redistribution/weight shifting/pressure relief activities), preventing skin moisture related to sweat or incontinence, and identifying and reacting to signs of emerging pressure ulcers (e.g. daily skin checks, seeking health care). Other, less skin specific preventive behaviours are also recommended and include dietary intake (nutrition and hydration) and physical activity. Despite efforts to disseminate the importance of skin care [2], research has shown that adherence to these behaviours is suboptimal [16–19], and 29.9 % of pressure ulcers are considered by patients themselves to be associated with shortcomings in their preventive behaviours [17].

Self-management programmes are designed to support people to change their health behaviours [20]. Self-management has been defined as ‘the individual’s ability to manage the symptoms, treatment regimes, physical and psychosocial consequences and lifestyle changes inherent in living with a chronic illness’ [21]. Self-management interventions aim to support patients with three main tasks: (1) the medical management of the condition, (2) coping with the effects of the condition and carrying out usual roles and activities, and (3) managing the emotional impact of the condition [22]. They can be generic or condition-specific, led by a variety of people (e.g. health care professionals, trained volunteers, peers), and delivered to groups or one-to-one. Their content can be variable, and they can be single-component or multifaceted [23–25]. Typically, they consist of more than the provision of education, which alone is often insufficient for behaviour change to occur [26]. Other components in self-management interventions may for example include skills training, action planning, problem solving, self-monitoring, feedback, practical support, training/rehearsal to communicate with health care professionals, and/or social support [27, 28].

Compared to more prevalent chronic conditions with well-established self-management programmes in Canada [29], self-management approaches have only recently begun to gain momentum in the field of SCI. Efforts to survey self-management needs [30] and to understand behaviour change in people with a SCI [31] have begun, and some self-management interventions have been developed [32, 33]. Whilst the focus has primarily been on interventions of an educational nature (i.e. provision of information) [34–36] (e.g. SCI University Online, Spinal Cord Essentials) [37, 38], recent years have seen a growing number of self-management interventions addressing skin care using other strategies. A recent study evaluating a self-management intervention for people with a SCI involved the identification of personally chosen goals, problem solving, motivational interviewing, and provision of information to improve practical knowledge [39]. Another intervention consisted of a risk assessment followed by personalized feedback on level of risk for developing a pressure ulcer [40].

Advances in SCI self-management require certain conditions to be met. First, the use of a common terminology to describe interventions is particularly important for self-management interventions as they vary widely in content [26]. Recent systematic reviews [41, 42] of behavioural interventions have used a behaviour change technique (BCT) taxonomy [43] to describe intervention content according to the ‘active ingredients’ they include. The Practical systematic RevIew of Self-Management Support (PRISMS) taxonomy is another taxonomy published recently that can be used to describe self-management interventions. Not only does the use of a taxonomy to code intervention content facilitate comparisons across studies, but it can also help identify those ingredients associated with greater effectiveness in changing behaviour.

Second, the use of theory in intervention design and evaluation can lead to advances in SCI management. The use of theory is recommended in intervention research [44, 45] as it can help predict the likely pathways of change and therefore the constructs to measure [46]. Some evidence suggests that theory-based interventions may be associated with larger effect sizes [47] although this has not always been confirmed in subsequent research [48]. Previous reviews [49, 50] have used a published checklist (Theory Coding Scheme (TCS)) [51] to assess the theoretical basis of primary studies.

A third requirement for advances in SCI self-management is for past evaluations to include appropriate intervention descriptions. The need for sufficient detail to be reported for replication to be possible has repeatedly been underlined [52–55] and has resulted in the publication of the ‘Template for Intervention Description and Replication’ (TIDieR) reporting guidelines [56]. Without complete descriptions of interventions, researchers cannot effectively use research evidence, nor can health care professionals and patients reliably implement changes that are known to be useful [56].

We have followed the Preferred Reporting Items for Systematic review and Meta-Analysis Protocols (PRISMA-P) guidelines [57] in preparing this protocol (see Additional file 1 for further details). Any amendments to this protocol will be described in the final review manuscript with the rationale supporting them. Using a preliminary search of the literature as a starting point, the research team determined a set of eligibility criteria, a list of data sources, and a search strategy to address the research questions above.

No review of self-management interventions for skin care in people with a SCI has been conducted to date, despite the importance of pressure ulcer prevention in this population. Previous reviews have mainly focused on educational interventions [34–36]. In addition to identifying self-management studies that include a focus on skin care and aim to prevent pressure ulcers in people with a SCI, the proposed systematic review aims to describe these interventions with regard to the active ingredients they include and their effectiveness. Describing intervention content with the consistent terminology that the taxonomies used offer will maximize comparability and replicability across studies and will help advance the science of behaviour change in SCI, which in turn can contribute towards improved care and support for people with a SCI. The use of RCTs only to examine effectiveness will help ensure that the conclusions made are tailored to the highest quality of evidence available. The decision to not include qualitative enquiries in this review was based on our preliminary literature search. Very few (if any) were found to have been published so far, and restricting this review to quantitative data was considered unlikely to influence results.

The importance of describing an intervention in sufficient detail to allow for replication has been emphasized in intervention research for a number of years [52–55] and is a necessary condition to advance science. A preliminary review of the literature suggests that some SCI self-management interventions may be poorly described. Poor descriptions of interventions are not uncommon in other fields [64] and may make intervention coding in this review more challenging. This explains the decisions to use one taxonomy containing broader ‘ingredient’ categories [28] than the other [43], and to contact authors to obtain intervention materials.

Examination of the extent to which studies adhere to the TIDieR reporting guidelines for intervention description will allow for further comments and recommendations to be made on the state of reporting in this area of research. Given the TIDieR guidelines [56, 65] are recent, findings from this review will not be used as a reliable indicator of their effect on reporting quality in SCI self-management research. Our focus on them is an effort to underline their importance in building a science of self-management and to gain insights into the intervention details most often reported and neglected so far, as this information may be useful in directing future reporting efforts.

Finally, the examination of the extent to which theory is used in the current SCI self-management interventions will provide the basis for recommendations relating to their design and evaluation. Exploring theory use may provide useful information on the current basis for developing such interventions, as well as the extent to which pathways of change are considered when selecting outcome measurements.

In summary, the proposed review of SCI self-management interventions for pressure ulcer prevention holds the potential to inform practitioners, researchers, and policy-makers by (1) describing variations in practices, (2) reviewing their effectiveness and identifying active ingredients related to larger effect sizes, and (3) identifying gaps and priorities to guide future work in this area. This information is likely to help contribute towards efforts to improve the quality of care and the support that people with SCI receive in the future.