Understanding the Patient's Experience with Acute Myeloid Leukemia: A Patient Interview Study

INTRODUCTION: One way to capture the patient reality of living with disease is to talk with patients and listen to them describe their experience.  We sought to understand the patient perspective regarding the signs and symptoms of acute myeloid leukemia (AML) and the impact of these on patients, through direct, qualitative patient interviews. 

METHODS: We conducted individual interviews with patients with AML (median age=48, 37% male) in Japan and the USA following a semi-structured interview guide, containing both open- and closed- ended questions.  These questions aimed to understand the patient’s experience both spontaneously and with specific probing.  Patients were asked to describe their individual experience of living with AML including signs, symptoms, impacts, and the experience during treatment of the disease. 

RESULTS: Forty-one patients were interviewed in the two regions: 23 in US, and 18 in Japan.  The sign, symptom, and impact ‘concepts’ identified were very similar across regions. Forty-nine symptoms were mentioned by US patients; 32 by Japanese patients.  The signs/symptoms reported most frequently and as most bothersome included: fatigue, bruising, weakness, dizziness, shortness of breath, and bleeding (Table 1). Twenty-three unique impacts of signs/symptoms were mentioned in the US and 20 in Japan.  The most frequent and bothersome impacts reported included:  decreased ability to maintain social/familial roles, anxiety, decreased ability to function, depression, fear, remission uncertainty, appetite loss, and low sex drive (Table 1).  These concepts were corroborated by two additional sources:  interviews with clinicians and published literature.

DISCUSSION: The priority concepts expressed by patients were relevant and important to all four AML patient groups in both regions.  This data provides valuable insight into patients’ experiences with AML and helps to select the appropriate patient-reported outcomes for clinical trials. 

Table 1. AML Symptom and Impact Frequencies

	US Frequency (N=23), n (%)	Japan Frequency (N=18), n (%)
Symptom
Fatigue	22 (95.6)	16 (88.8)
Bruising	18 (78.2)	7 (38.8)
Weakness	18 (78.2)	15 (65.2)
Dizziness	15 (65.2)	12 (52.1)
Shortness of Breath	13 (56.5)	15 (65.2)
Bleeding	12 (52.1)	13 (72.2)
Impact
Decreased ability to maintain social/familial roles	21 (91.3)	13 (72.2)
Anxiety	20 (86.9)	17 (94.4)
Decreased ability to function	20 (86.9)	17 (94.4)
Depression	16 (69.5)	7 (38.8)
Fear	15 (65.2)	12 (52.1)
Remission uncertainty	15 (65.2)	17 (94.4)
Appetite loss	14 (60.8)	13 (72.2)
Low sex drive	11 (47.8)	7 (38.8)