'For the first month I was telling everyone I had melanoma': addressing the information needs of myeloma patients
Objectives: Individuals diagnosed with multiple myeloma (MM) are faced with a cancer with no curative intent, significant heterogeneity, increasingly complex and advancing treatment schedules significant morbidities. Limited research has been undertaken examining the information needs of patients with MM, we aimed to identify the information and education needs of patients with MM order to develop resources and programs addressing these needs. Methods: An exploratory descriptive qualitative design was employed, utilising individual and focus group interviews guided by a semi-structured interview schedule. No one directly involved in p care was present. Interviews were audio-recorded and transcribed verbatim. Content data analysis was used. 47 participants agreed to participate. Interested participants who could not attend th focus groups were offered individual interviews. For patients, range of time since diagnosis was 6 months to 18 years. Results: Managing uncertainty emerged as a predominant theme with a range of information seeking behaviours (HISB) utilised as coping mechanisms. Three major subthemes, contextualising, place, person, stage of disease), learning the culture (navigation, accommodating and assimilating, dynamic process) and managing toxicities (constant, compounding, impact on roles) emerged significant subthemes. Unmet needs seem to be more process than content driven. Conclusions: Identifying accurate and appropriate information is a significant challenge for patients with MM. Specialist care coordination, led by a health care professional can assist with naviga the complexities of multiple lines of therapy, significant predictable toxicities over remitting and relapsing course. Interventions assisting coordination are highly valued by patients.
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