Academic journal article Australian Health Review

Overcoming the Distance Barrier in Relation to Treatment for Haematology Patients: Queensland Findings

Academic journal article Australian Health Review

Overcoming the Distance Barrier in Relation to Treatment for Haematology Patients: Queensland Findings

Article excerpt

Introduction

In Australia, people living in regional, rural and remote areas have lower survival rates for cancer than those living in major cities.1-3 As Coory et al.4 report in relation to cancer mortality, the regional and remote disadvantage has been recognised for more than two decades and yet there has been little progress in this area. This disadvantage is accentuated by the fact that, in Australia, the mortality rates from cancer have been decreasing since the 1990s.4,5 The limited access to treatment options for patients in rural areas is documented as one of the contributing factors to cancer-related mortality being higher in rural areas than in urban centres.2,6 Accessing specialist care for cancer usually involves relocating to the metropolitan area, which can involve considerable psychosocial and financial hardship.7-10 There is a consequent call in the literature for research to examine solutions to overcome the disadvantage associated with distance from specialist treatment.4 This paper responds to that call by presenting findings from Queensland research on a subgroup of cancer patients, namely those diagnosed with a haematological malignancy. The research indicates that decentralisation of treatment is assisting haematology patients to overcome the profound difficulties associated with travelling to the metropolitan area for treatment.

Methods

The aim of the study was to document the financial and psychosocial impact of relocation for specialist haematology treatment. The study was conducted in 2013-14 and focused on haematology patients in Queensland. The study was funded by the Leukaemia Foundation of Queensland (LFQ), a not-for-profit organisation dedicated to the care and cure of patients and families living with blood cancers and related disorders. The LFQ assists haematology patients and their families through the provision of a variety of free support services (see http:// www.lfq.org.au/about-us, accessed 30 October 2014).

The methodology used was descriptive qualitative research, which involved open-ended interviews with a purposive sample of participants. Potential participants were chosen from the LFQ patient contact database for 2012. The descriptive qualitative research method is used to record a basic description and summary of a phenomenon,11 which, in this case, is the experience of relocation for specialist treatment for haematology. The method follows the basic concepts of naturalistic inquiry, where the research adheres closely to the data, which is not highly abstracted and reflects the exact words of the participants.11

The process of selection and enrolment of participants was conducted by university researchers who were independent of LFQ to ensure that the identification of those selected and who participated remained confidential from LFQ. The participants received a written project description and consent form by post detailing the aim, research process and consent procedures for the study. This was followed up by a telephone call from the Project Officer for the study inviting participation. If agreeing to participate, a time suitable to the participant was made for the interview; all the participants chose telephone interviews as the medium for discussion. Before the interview, the participants were again advised of their ethical rights (autonomous choice, confidentiality, right to withdraw) and full consent was taken. The Griffith University Human Research Ethics Committee provided full ethics approval for the study (GU Ref No.: HSV/ 09/13).

Purposive sample of participants

A purposive sample of potential participants, based on gender, diagnosis, age and geographic location, was developed from the LFQ 2012 patient database. Forty-five participants were enrolled in the study. The sample contained: (1) adult patients of all ages (18-29 years, n =4; 30-39 years, n =5; 40-49 years, n = 12; 50-59 years, n = 17; 60-69 years, n = 5; 70+ years, n = 2); (2) both genders (n = 25 women; n = 20 men); (3) a range of haematological diagnostic groups (non-Hodgkins lymphoma, n = 19; acute myeloid leukaemia, n = 7; myeloma, n = 6; acute lymphoblastic leukaemia, n = 1; acute promyelocytic leukaemia, n =4; Hodgkin's disease, n = 3; chronic myeloid leukaemia, n =1; chronic lymphocytic leukaemia, n = 1; myelodysplastic syndrome, n = 1; myloproliferative neoplasm-essential thrombocythaemia, n = 1; haemolytic anaemia, n = 1); and (4) a geographic selection of participants, including those living within 50 km from the primary specialist centres in the metropolitan centres where transplantation is conducted (Metropolitan Treating; n = 5), those living within 50 km from regional treatment centres (Secondary Treating; n = 16), those living 50-300 km from treating centres (Regional and Rural; n = 14), those living in remote locations >300 km from treatment centres (Remote; n = 9) and those living interstate (n = 1). …

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