By Anna Sze Tai and Sue Morey
Improvement in survival in cystic fibrosis (CF) has led to a substantial increase in numbers of the adults with CF past few decades [1, 2]. In many parts of the world, the number of adults now exceeds the numbers of children with CF [1, 2]. Adults with CF face the daily challenge in balancing education, work and family commitments with their disease management. Patients often need to contact the Adult CF specialist team for advice on disease management and coordination of care around their work and family time-table. Current ECFS guideline recommends patients have ready access to the CF center for telephone advice for emergency management or consultation [3, 4]. The ‘open-door’ policy of adult CF centers is an important component of ambulatory care in adults with CF, ensuring a timely and expert-level response to patient queries. Management of unscheduled patient-initiated contacts is an important and often under-recognized function of the adult CF team. There is a paucity of data on the nature and frequency of these unscheduled contacts and their potential impact (and demands) on the organization of the CF team.
In this issue of the Journal of Cystic Fibrosis, Burnet et al. reported the results of a two-staged prospective study of unplanned patient-initiated contacts in a single adult CF center (n = 410 patients) . During the first stage, all patient-initiated contacts were prospectively recorded over a four-month period. Four physicians and three nurses prospectively documented how and why patients contacted the team and the time spent responding to these requests. During the second stage, contacts generated from a subset of 212 patients were prospectively recorded to explore the association between contact frequency and disease severity.
During the first stage, 259/410 (65%) patients initiated 1067 contacts over 4 months, averaging 13.3 contacts per day. Average time spent addressing patient contacts by all participants combined was 8 h and 7 min per work week. This was likely an underestimate given not all team members (e.g. allied health specialists) who might be contacted by patients participated, and data collection was limited to working hours during weekdays. Nevertheless, the result confirmed that managing unscheduled contacts added a significant workload to the CF team. Factors associated with greater contacts (≥5 contacts/year) included female sex and greater disease severity, reflected in severe airflow obstruction (FEV1 ≤ 30% predicted), ≥ 5 physician visits/year and ≥ 1 hospital admission/year.
The frequency of unscheduled contact in adults with CF was markedly higher than that observed amongst high-risk COPD patients, reflecting the greater healthcare demand of adults with CF . Interestingly, only <20% of requests were related to medical issues (e.g. exacerbations), whereas the bulk of requests were related to daily management issues (e.g. script renewal), intravenous antibiotic requests, administrative queries and non-urgent miscellaneous matters. This perhaps reflects that the adult CF center has generally provided comprehensive, primary up to expert-level tertiary care to their adults with CF. The adult CF center can be viewed by the patient as ‘the one-stop shop’ for both their CF and non-CF related healthcare needs. Patients may not be aware of the need for a family physician for their non-CF related healthcare needs, including travel vaccinations, women health issues, age-specific screening (e.g. mammograms, monitoring for hypertension).
This is the first study which demonstrates the significant burden of unplanned contacts on the organization of the adult CF centre. The strength of the study is the prospective design which enables differentiation between planned and unplanned contacts. There was a comprehensive recording of response time in the clear majority of patient contacts (>95%) by the team members as they carry out their day-to-day services within a large CF centre which is an impressive undertaking. The key limitation is the single centre nature of the study which limits its comparability to other centres in other health settings internationally. Nevertheless, Burnet et al. has clearly revealed the burden of unscheduled contacts and highlighted the need for more efficient management strategies. Firstly, development of an effective centralised triaging system (e.g. collective ‘CF Team’ email inbox and phone line) managed by experienced CF staff who prioritise and streamline all incoming requests to appropriate team members can maximize efficiency of the CF team. Secondly, involvement of administrative staff to assist with relevant non-medical requests (e.g. clinic rescheduling, etc) will lighten the burden on the clinical team. Thirdly, ultilisation of new telecommunication and health informatics technologies can potentially improve communication and data transparency. Telehealth technologies (e.g. Smartphone apps, Skype or WhatsApp) have already shown significant promise in improving patient access to care and early treatment in CF, particularly in setting where distance from centre to the patients is considerable and pop-in clinics are likely to be impractical [, , ]. Some of these telehealth technologies can potentially serve as communication platforms to provide education resources on commonly-asked questions.
To continue reading please visit: https://www.sciencedirect.com/science/article/pii/S1569199318306982