This commentary explores key messages highlighted in this qualitative review for clinicians, service planners and providers regarding specific considerations for the care needs of cohorts experiencing cystic fibrosis related diabetes (CFRD).
Cystic fibrosis (CF) is a complex multisystem disease and improved survival has led to increased levels of co-morbidities of which diabetes is the most prevalent. This review has highlighted CFRD as a distinct condition, albeit it one that shares features with Type 1 and Type 2 Diabetes. The pathological differences associated with CFRD such as insulin deficiency and glucose tolerance abnormalities are correlated with higher mortality, hospital admissions and lower body mass index than cohorts with CF but without CFRD.
Additionally, requirements for high energy nutritional intake for patients with CFRD conflicts recommended advice for Type 1 and 2 Diabetes. Best practice guidelines recommend collaborative multidisciplinary specialist team care provision for patients with CF and CFRD; it should be noted that care may also be provided in non-specialist settings. This requires development of knowledge amongst a wide variety of healthcare professionals and care settings regarding differences in CFRD aetiology, care and management compared to other types of diabetes. As a clinician providing care for individuals with diabetes over three decades on the ground clinical experience indicates these distinctions between care requirements for cohorts with CFRD and other types of diabetes may be missed due to deficits in specific CFRD-related knowledge.
The authors present an argument that care guidelines have been informed in the main by quantitative evidence hierarchies; however, a dearth of evidence exists regarding experience of and challenges associated with CFRD from the perspective of individuals living with CFRD. In this review, the authors explored experiences of adults and adolescents living with and managing CFRD.
Living with any form of diabetes requires significant levels of self-management; patients with CFRD have complex agendas associated with life, CF and CFRD. Four main themes are presented which represent similar adolescent and adult experiences; however, some variations were noted in sub-themes. These themes have informed this commentary in reference to considerations for clinicians, service planners and providers regarding care for persons with CF and CFRD.
Theme 1: ‘Knowledge and understanding’ identified the lack of knowledge regarding the cause and management of CFRD amongst patients, family, friends and healthcare professionals with particular reference to dietary advice. This contributed to misunderstanding which could have a profound effect particularly when comparisons were made to Type 1 and 2 Diabetes. Additionally, the negative impact of CFRD and associated complications had the potential to be ‘downgraded’ in comparison to the life limiting condition of CF.
This theme identified that the lack of adequate information and comparative appraisals may lead to spurious perceptions of CFRD which may be viewed as a temporary, separate or less serious condition and contribute to the reluctance to integrate care for these associated conditions. As 19% of adolescents and 40 -50% of adults with CF >16 years old have CFRD, as a priority message for clinicians, service planners and providers, the provision of accurate information and fostering awareness regarding potential to develop CFRD needs to be made earlier in the CF illness trajectory rather than at CFRD diagnosis. In this respect, annual screening for CFRD was beneficial to raise awareness of the possibility of developing CFRD. Moreover, consideration is required in reference to resources and expertise required to address knowledge and understanding deficits.
Theme 2: ‘Emotional and social impact’ examined the impact of CFRD from diagnosis and effects on everyday life. Reported feelings ranged from ‘shocking’ and ‘agitating’ experienced over a protected period of time, to relief as symptoms experienced had an explanation. Some participants reported annual screening assisted acceptance and prepared them for CFRD diagnosis. Increased mortality and morbidity concerns were expressed by participants; however, CF was viewed as life limiting in comparison; lesser primacy was placed on the potential to develop diabetes-related complications. Additionally, CFRD was viewed as constant and visible, contributed to by the requirement to manage aspects of diabetes care such as blood glucose measurement/insulin administration in comparison to CF management which was considered less publicly visible. This had the potential to contribute to engaging in activities unconducive to a compromised health status as patient’s prioritised preserving immediate quality of life over rigorous diabetes treatment. Conversely, having life aspirations could enhance CF and CFRD care, which was particularly evident for adolescents whose life goals frequently motivated self-care activities.
This has connotations in reference to insights from the patient lens regarding impact on social and emotional health associated with CFRD self-management. This should be considered when developing individual educational and management plans collaboratively for adolescents and adults with CFRD to avoid a one-size-fits-all approach.
Theme 3: Balancing ‘CF and CFRD’ identified the competing treatment demands of managing these conditions such as balancing respiratory treatment/therapies, nutritional management, insulin administration and blood glucose monitoring. CFRD was linked to increased treatment burden and CF viewed as the most important condition.
A key message informed by this theme is understanding the daily journey for patients with CF and CFRD which can be used to inform collaboratively designed individualised treatment and management plans to meet patient goals. Furthermore, cognisance should be afforded to the additional supports, resources, expertise, education and advice required by patients to engage in CFDR self-management.
Theme 4: ‘Acceptance and adjustment’, highlights whilst the deterious effects of a CFRD diagnosis may be protracted, over time, patients were more likely to accept its implications and adjust. The capacity to accept and adjust to a CFRD diagnosis were bolstered by clarity and resolution of uncertainties.
The key messages in terms of this theme are that healthcare professionals need to be aware that whilst patients may be expert in the management of CF, they may not be equipped with knowledge or confidence to manage CFRD. Also, that strategies and resources are required to prepare patients early in their CF illness trajectory for the potential to develop CFRD, to include educational, information and peer supports to facilitate acceptance and adjustment.
Biography
Denise Blanchfield, (RGN, RNP, RANP, FFNMRCSI, Higher Diploma Diabetes, MSc Advanced Practice Nursing, PhD) has in a 32-year nursing career developed advanced practice nursing clinical and professional expertise in the management of chronic illness, contributed to educational curricula development, clinical practice innovation and design, national healthcare policy, research and publication.