The Symptom Experience Of Newly Diagnosed Patients With Crohn’s Disease: A Longitudinal Qualitative Research

[Objective] The objective of this study was to explore the symptom experience of patients with Crohn’s disease within the first year following their diagnosis so as to provide reference for medical staffs to develop patient-centered phased symptom management programs.[Methods] A longitudinal qualitative research was adopted.Eighteen patients with Crohn’s disease from inpatient and outpatient departments of two Grade three Class A hospitals in Hangzhou,Zhejiang province were recruited through purposive sampling.Semi-structured interviews about symptom experience were conducted on four occasions: soon after diagnosis(within 1 month of the diagnosis),3,6 and 12 months post-diagnosis.The types of symptoms were summarized and symptom clusters were explored.Data analysis of each time point was based on conventional content analysis.After the analysis of the four time points was completed,the data of each time point was compared longitudinally as a whole to reveal the corresponding development trend.[Results] In this study,a total of 38 symptoms(34 physical symptoms and 4 psychological symptoms respectively)and 6 symptom clusters were extracted from the interview data.In addition,five themes and twelve sub-themes were formed after conventional content analysis:the feelings towards the symptoms(symptoms make me feel uneasy,symptoms make me feel inferior,and symptoms make me feel helpless);acceptability of symptoms(difficult to accept,have to accept,be able to accept);symptom disclosure strategy(disclosing proactively,not disclosing);functions of symptoms(assessing function,warning function);symptom management strategies(symptom prevention strategies and symptom coping strategies).Overall,within the first year after diagnosis,the negative emotions caused by symptoms gradually decreased over time,and the acceptance of symptoms gradually improved.However,the disclosure strategy of symptoms didn’t change too much,and patients tended to not reveal their symptoms.In addition,when the disease was in remission after treatment,the warning function of symptoms gradually weakened,and measures taken by patients to prevent symptoms decreased over time.At the same time,with the accumulation of disease experience,the symptom coping strategies of patients was changed from seeking medical helps actively to self-treatment and self-observation.[Conclusion] This study offers a dynamic description and low-inference interpretive understanding of the symptom experiences of patients with Crohn’s disease within the first year following their diagnosis.Medical staffs could take targeted interventions according to the characteristics of symptom experience in different periods to assist Crohn’s disease patients to manage their symptoms,so as to reduce their symptom burden and improve their quality of life.