Living with relapsed myeloma: Symptoms and self‐care strategies

Abstract

Aims and ObjectivesTo explore which symptoms relapsed myeloma patients experience and what self‐care strategies are used.MethodsThis was a qualitative study utilising focus group interviews (n = 4) with relapsed myeloma patients (n = 15) and carers (n = 9). The focus groups were analysed and guided by thematic analysis.ResultsThree major themes with subthemes were identified following analysis of the interview data: “difficult symptoms; “self‐care” and “feeling vulnerable.” These findings indicate the challenges relapsed myeloma patients experience with ongoing symptoms and highlight the importance of continuity of care.ConclusionsSymptom management for myeloma patients remains complex due to the array of treatments given. These patients require holistic care and thorough regular assessments to help them cope with the adverse effects on their physical and psychological health. For patients with a long‐term diagnosis of myeloma, self‐management workshops and regular education sessions may be of benefit.Relevance to clinical practiceThis study highlights the key role of healthcare professionals in going beyond assessment of symptoms to offering advice and support to assist relapsed myeloma patients in managing their symptoms.

Multiple Myeloma Incidence and Mortality Around the Globe; Interrelations Between Health Access and Quality, Economic Resources, and Patient Empowerment

“…In several countries, patients with cancer nowadays acquire significant knowledge about their disease, enabling them to cooperate with their caregivers and to make informed decisions about diagnostic procedures and treatment selection. Above this, they may acquire significant expertise in the recognition and management of critical situations, thereby reducing the risk for adverse outcome . One of the options for self‐empowerment is by viewing Web sites of international organizations devoted to improve patient education and empowerment, such as the one of the IMF .…”

Neuropatia periférica em pessoas com mieloma múltiplo

“…(4) Oncology nurses play a key role in the provision of information to patients/ families aiming at reducing treatment abandonment, which requires communication skills, observation, counseling, teaching, and management of complex tasks. (20) Hematology/oncology nurses provide information, education, and support to patients/families with MM, and this has a significant effect on people's experience regarding care; they are also responsible for the continuity of service within the multidisciplinary team and being the link between primary and secondary care services. It is worth noting that the continuous assessment of these individuals is essential for the management of toxicities related to treatment and maintenance of good quality of life.…”

“…It is worth noting that the continuous assessment of these individuals is essential for the management of toxicities related to treatment and maintenance of good quality of life. (4,20) As for religion, 98% of patients stated that they practice a religion. Religious beliefs expressed by means of prayers, meditation and rituals are part of common mechanisms which individuals rely on when they are ill. (21) The more severe the disease, the stronger the relationship with religion, being influenced by the individual's beliefs and values.…”

Using nominal group technique to compare patients’ and clinicians’ perspectives on symptoms in multiple myeloma to inform the development of a self management tool for patients with relapsed myeloma

“…Some carers also attended the focus groups with their relatives. The findings of these focus groups are discussed elsewhere 18 . We chose this method for phase 1 as we wanted to gain a description of the lived experience of symptom burden for this population and what self care strategies patients were already using.…”

“…At the focus groups, participants were asked to discuss their experience of common symptoms and adverse events and how these impacted on their quality of life. Patients' experience of symptom management and what improvements could be made to symptom management were also explored as well as asking patients for their opinions on a self-management tool 18 . All interviews were audio-recorded and transcribed and then analysed using thematic analysis, revealing 12 common symptoms within the patient experience.…”