A systematic review of the literature on nursing sensitive outcomes in scleroderma: towards a structured path led by a nurse case manager

Background and Aim. SSc represents an important nursing challenge as it still lacks specific NSO. The aim of this SLR was to identify in SSc the NSO and the screening tools reported in the literature to design a preliminary behavioural flow chart for the nursing case management of SSc patients. Methods. A SLR strategy was performed in the database Medline (PubMed), CINHAL, EMBASE and PsycINFO for identifying relevant studies that were assessed as eligible if they presented the following inclusion criteria: publication between 01/1990 and 01/2018, English language, SSc adult patients, with nursing interventions and outcomes. Interventional quantitative primary works were only included. Based on the listed inclusion/exclusion criteria, 2 reviewers assessed the eligibility of the identified studies based on title and abstract screening. Articles meeting the inclusion criteria were read as full text and further assessed for inclusion in the SR. Endnote software package was used to manage reference. Critical Appraisal Skills Programme tools were used to assess the quality of the included studies. Data on NSO were extracted independently by two reviewers and the OMERACT) comprehensive conceptual framework for health was used to contextualise and summarize findings. Results. 7015 records were screened for title and abstract, 39 full-text were identified and further assessed. At the end of the revision, 11 studies were included in this SLR (3 randomized clinical trials, 1 pre-post retrospective study and 7 pre-post clinical studies). For the core area ‘pathophysiological manifestations’ 4 domains - health’s status, digital ulcers, clinical efficacy and fatigue - and NSO - disease activity, level of skin damage, procedural pain, digital ulcer status, pain, gastrointestinal symptoms and fatigue- were identified. For the core area ‘impact on life’, 5 domains were found (functionality, patient knowledge, patient satisfaction, psychological status and quality of life) and the following NSOs were identified: physical function and parameters, health events, upper limb functionality, patient’s knowledge of disease complications, degree of self-management, need for nursing instructions, self-efficacy, health efficacy, psychological state, depressive mood and quality of life. Conclusions. The identified outcomes allow the preliminary structuring of a behavioural flow chart for nursing SSc case management. These items may be useful in the screening phase of the case management procedure taking in charge the patient for the first assessment. Moreover, they might be also useful for symptom management and in the monitoring and evaluation of patient’s health. Further researches are warranted to examine the multidimensional and complex role of nursing in the management of SSc patients.