Abstract

BackgroundHigh rates of anxiety, depression and unmet needs are evident amongst haematological cancer patients undergoing treatment and their Support Persons. Psychosocial distress may be minimised by ensuring that patients are sufficiently involved in decision making, provided with tailored information and adequate preparation for potentially threatening procedures. To date, there are no published studies evaluating interventions designed to reduce psychosocial distress and unmet needs specifically in patients with haematological cancers and their Support Persons. This study will examine whether access to a web-based information tool and nurse-delivered telephone support reduces depression, anxiety and unmet information needs for haematological cancer patients and their Support Persons.Methods/DesignA non-blinded, parallel-group, multi-centre randomised controlled trial will be conducted to compare the effectiveness of a web-based information tool and nurse-delivered telephone support with usual care. Participants will be recruited from the haematology inpatient wards of five hospitals in New South Wales, Australia. Patients diagnosed with acute myeloid leukaemia, acute lymphoblastic leukaemia, Burkitt’s lymphoma, Lymphoblastic lymphoma (B or T cell), or Diffuse Large B-Cell lymphoma and their Support Persons will be eligible to participate. Patients and their Support Persons will be randomised as dyads. Participants allocated to the intervention will receive access to a tailored web-based tool that provides accurate, up-to-date and personalised information about: cancer and its causes; treatment options including treatment procedures information; complementary and alternative medicine; and available support. Patients and Support Persons will complete self-report measures of anxiety, depression and unmet needs at 2, 4, 8 and 12 weeks post-recruitment. Patient and Support Person outcomes will be assessed independently.DiscussionThis study will assess whether providing information and support using web-based and telephone support address the major psychosocial challenges faced by haematological patients and their Support Persons. The approach, if found to be effective, has potential to improve psychosocial outcomes for haematological and other cancer patients, reduce the complexity and burden of meeting patients’ psychosocial needs for health care providers with high potential for translation into clinical practice.Trial registrationACTRN12612000720819.

Highlights

  • This study will assess whether providing information and support using web-based and telephone support address the major psychosocial challenges faced by haematological patients and their Support Persons

  • This study will examine, using a randomised controlled trial, whether an integrated approach that includes access to a web-based information tool and nurse-delivered telephone support reduces for both haematological cancer patients and their Support Persons (i) unmet information needs; and (ii) depression; and (iii) anxiety; at 2, 4, 8 and 12 weeks follow up

  • Modules adapted from public domain content management (CMS) software have been used to facilitate generation and modification of textual content

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Summary

Discussion

Despite the challenges faced by patients with haematological malignancies and their Support Persons, few interventions have addressed the psychosocial needs of this group. This study will assess whether a web and telephone based approach to providing information and support addresses psychosocial challenges faced by haematological patients and Support Persons. The intervention includes Support Persons, uses technology to support tailoring, is designed with integration into routine clinical practice in mind, and draws on best practice recommendations for the provision of information. The approach, if found to be effective, has potential to improve psychosocial outcomes for haematology patients and other cancer patients, reduce the complexity and burden of meeting patients’ psychosocial needs for health care providers and has high potential for translation into clinical practice. Authors’ contributions All authors were involved in design of the clinical trial. JB, RSF, WS, RS, and AW developed the intervention and are responsible for implementation of the trial. All authors have contributed to, read, and approved the final manuscript

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