Abstract
Despite the burden of illness associated with haematological cancers, little research is available about improving psychosocial outcomes for this group. Given scarce research funds, it is important to ensure that resources are used strategically for improving their psychosocial well-being. This study aimed to identify the perceptions of professionals, patients and carers regarding prioritising psychosocial research efforts. First, an expert panel's views on priorities for research were identified. This was followed by a web survey to obtain the perceptions of 117 health professionals, patients and carers. The value-weighting survey used points allocation, allowing respondents to indicate the relative priority of each option. A substantial proportion of resources were allocated to patients who were newly diagnosed or receiving treatment. Less priority was given to other stages of the cancer journey or non-patient populations. There was no indication that any type of psychosocial research was a priority; however, some differences were identified when comparing the priorities of the three respondent groups. To improve psychosocial outcomes for haematological cancer patients, resources should be directed towards patients in the early stages of the cancer journey. There may be a need for research investigating potential interventions to improve psychosocial outcomes for patients with haematological cancers.
Highlights
Haematological cancers are associated with a high burden of illnessAs treatment outcomes improve and the population ages, haematological cancers such as lymphoma, leukaemia and myeloma represent a growing cancer survivor population (Australian Institute of Health and Welfare (AIHW) & the Australasian Association of Cancer Registries (AACR) 2008)
Survival is relatively poor (Australian Institute of Health and Welfare (AIHW) & the Australasian Association of Cancer Registries (AACR) 2008), and treatments for these cancers can result in a range of debilitating side effects (Richardson et al 1988)
Both researchers who choose the focus of their research efforts and those involved in making decisions about strategic directions for research funding would benefit from an understanding of what kinds of psychosocial research are most needed
Summary
As treatment outcomes improve and the population ages, haematological cancers such as lymphoma, leukaemia and myeloma represent a growing cancer survivor population (Australian Institute of Health and Welfare (AIHW) & the Australasian Association of Cancer Registries (AACR) 2008). It is important that the available research resources are used strategically to address key issues. Both researchers who choose the focus of their research efforts and those involved in making decisions about strategic directions for research funding would benefit from an understanding of what kinds of psychosocial research are most needed. Research with other cancer groups (Grassi & Rosti 1996; Devine 2003; Hodgkinson et al 2007) suggests it is important to consider which populations should be the focus of research as well as the research topic or type. Psychosocial research topics may range from the consideration of measurement issues (Thewes et al 2004), to evaluation of specific therapies (Marcus et al 1998) or changes in the treatment environment (Mills et al 2009)
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