Symptoms and adherence in adults with Cystic Fibrosis: understanding the complex relationship

Treatment adherence in adults with Cystic Fibrosis (CF) is low. One of the reasons identified for lack of adherence to treatments is that patients may not experience any immediate relief in their symptoms or notice changes as a result of taking their treatment, with many reporting that they do not perceive there to be consequences of non-adherence. To date previous literature has not investigated the impact of presenting symptom and adherence data to participants to illustrate the links. The overarching aim of this thesis was to explore the feasibility and usefulness of self-monitoring and using adherence and symptom feedback data with patients with Cystic Fibrosis. Within this thesis four studies, which have mixed methodologies, are presented: Study 1 was a quantitative survey study which recruited members of the general public (n=106) and aimed to investigate how graphical adherence and symptom data should be presented to aid understanding of feedback data. The materials used include the Graph Literacy Scale and a bespoke Cystic Fibrosis Graph Survey. The study found that including a text description made no significant difference to how participants interpreted graphs and participants preferences in terms of format was a double line chart. The findings in relation to graph preferences were utilised in studies 2 and 3 of the thesis when feedback data was presented to participants. Study 2 included a pilot study and main study. The study aimed to explore the preliminary feasibility of self-monitoring within an N-of-1 study and examining the temporal relationship between treatment adherence and self-monitored symptoms in CF patients. The pilot study was mixed methods and included a N-of-1 study (n=6) and also a qualitative content analysis of interview data with the same participants. Materials used include a symptom questionnaire, Fitbit watches and objective adherence data. Individual symptom and adherence data was presented to participants during their interview. The findings from the pilot study revealed that self-monitoring design was feasible and acceptable to participants and a number of changes to the design of the main N-of-1 study was made as a result of the findings. The main study consisted of a N-of-1 study (n=19) the symptom questionnaire was modified slightly as a result of the findings from the pilot study. Overall the study concluded that the relationship between symptoms and adherence is unique and individualised. Study 3 was a qualitative study and included a sample of participants from study 2 (n=13). This study aimed to further develop an understanding of how people recognise the factors which influence their CF symptoms, how these symptoms are influenced by treatment and the value of symptom tracking with patients with Cystic Fibrosis as a long-term tool. Materials used included an interview schedule and feedback data (from the N-of-1 study). The data revealed a total of five themes; the feasibility of symptom tracking, the impact of symptom tracking, clinical applications, understanding the complexity of symptoms and adherence and finally why I take my treatment. These findings offered more insight into the feasibility and usefulness of symptom tracking. The final study of the thesis (study 4) was a qualitative study which recruited 8 Healthcare Professionals (HCP). Materials used included an interview schedule and a summary of previous findings. The study aimed to further understand health professionals’ perceptions of the relationship between treatment adherence and symptom experiences and explore the perceived feasibility and usefulness of using this data as part of clinical management of CF. In total there were 6 themes identified: ‘The influence of modulator treatments’, ‘Empowerment and respect when managing adherence’, ‘Symptom tracking an additional burden?’ ‘The unique experience of living with CF’, ‘Symptom tracking: it has a role for some patients?’, ‘Contextual issues: the closure of CFHH and ‘The practicalities of using symptom tracking data in clinic’. These findings provided insight into the feasibility and acceptability of symptom tracking in the clinical setting. The findings from this thesis highlight the complex nature of the relationship between symptoms and objective nebuliser adherence in adults with CF. In relation to symptom tracking, the findings suggest that this could be something which is useful and feasible to some patients living with CF and also HCP’s. This thesis offers a unique contribution in that the relationship between symptoms of CF and nebuliser adherence has been investigated using novel N-of-1 methods, the findings of such have been shared with CF patients and professionals.