Disabled, invisible and dismissed—The lived experience of fatigue in people with myeloproliferative neoplasms

Abstract

Background Myeloproliferative neoplasms (MPNs) are rare haematological cancers. Several studies report the most common MPN symptom leading to reduced quality of life is fatigue. Yet, how fatigue affects the lives of people with MPN is not well described. Aims The purpose of this qualitative study is to better understand the lived experience of fatigue associated with MPN. Methods and results People with MPN who had experienced fatigue were invited to complete an online survey and if eligible, then to participate in semi‐structured interviews and focus groups, exploring their experiences of fatigue. Thematic analysis of interview transcripts by two researchers produced themes describing the lived experience of fatigue. Twenty‐three people with MPN participated in seven interviews and four focus groups. Qualitative data revealed how fatigue significantly affected participants' experiences of functional, social, family and emotional wellbeing. Participants reported that fatigue was infrequently acknowledged or addressed by health professionals, and a lack of information or support to manage their fatigue. Four themes including 12 sub‐themes describe the experience of fatigue in MPN: (1) the distress of the MPN diagnosis, (2) sensations of fatigue, (3) daily life and emotional burden with fatigue and (4) how people managed their fatigue with limited guidance. Conclusion Fatigue in MPN is common, debilitating and distressing. It affects all aspects of health, wellbeing and life. Health professionals could affect patients' lives substantially by acknowledging and understanding fatigue in MPN, including contributing factors and potential opportunities for management. More systematic data describing the causes and management of MPN fatigue is needed.

The psychological needs of adolescents and young adults with a diagnosis of myeloproliferative neoplasms: a systematic scoping review of the literature

“…Findings identified relevant to the developmental stage of the AYA with MPN indicated uncertainty around the future in terms of health status [3] and impacts on career [14]. AYA with MPN reported differences between themselves and peers without MPN citing distress in relation to not being able to do as much as their contemporaries [3].…”

“…With an average age of onset in the sixth decade, myeloproliferative neoplasms (MPN) are classified as rare. While clinical manifestations vary by subtype, high symptom burden and reduced quality of life are frequently reported [1], with fatigue affecting up to 95% of people with an MPN [1][2][3], and often co-existing with mood related symptoms [2]. in addition, anxiety and depression are also common [1,4].…”

“…twenty-seven articles were identified as potentially containing additional data due to age-ranges reported. Following requests for access to raw data, five data sources [3,4,[13][14][15] were included in the final synthesis (see table 1 for characteristics of included studies).…”

“…Fatigue was cited as problematic by the AYA participants, both in terms of the impact of fatigue on their life and the need to adjust their work to take account of the fatigue [14]. how fatigue was handled by medical professionals was reported to be unhelpful [3] and to have an impact on under reporting of symptoms [3]. AYA were uncertain as to whether fatigue was due to lifestyle or MPN related factors [3,14].…”

“…how fatigue was handled by medical professionals was reported to be unhelpful [3] and to have an impact on under reporting of symptoms [3]. AYA were uncertain as to whether fatigue was due to lifestyle or MPN related factors [3,14]. hand in hand with fatigue, sleep difficulties were also identified [15].…”