Methods
Design and setting
A cross-sectional survey of outpatients was conducted in three metropolitan hospitals located across three Australian states. Participants were recruited from haematological cancer outpatient clinics treating a minimum of 300 patients per year for haematological cancer. Ethics approval was provided by the University of Newcastle Human Research Ethics Committee and site approvals were obtained from participating hospitals.
Participants
People with a diagnosis of any haematological cancer, who were aged 18 years or older and presenting for a scheduled outpatient appointment at a participating cancer clinic were eligible to participate. Patients who were not adequately proficient in English to complete the survey, had not previously attended an appointment at the clinic or judged by clinic staff as unable to provide informed consent were excluded.
Recruitment
Patients were approached and invited to participate in the study by a trained research assistant in the clinic waiting room. Clinical hospital staff assisted the research assistant to identify potentially eligible patients from the daily clinic appointment list. The research assistant provided eligible patients with a verbal overview of the study and a written information statement. Patients who indicated an interest in participating were asked to sign a consent form. Age and gender of non-consenters were recorded by the research assistant on a study log sheet to allow for possible consent bias to be examined.
Data collection
Participation in the study involved completion of two pen-and-paper surveys. Participants were invited to complete the first survey at the time of consent while waiting for their appointment, or could take it home and post it back to the research team within 1 week. The first survey obtained self-report information about participants’ socio-demographic characteristics, their haematological cancer diagnosis and its treatment. The follow-up survey was mailed to participants approximately 4 weeks later. This second survey included questions about chemotherapy side-effects, experiences obtaining cancer and treatment-related information (findings reported elsewhere) and views regarding optimal care for haematological cancer patients. Participants were asked to complete the survey and return it to the research team using a provided reply-paid envelope. Reminders, including a letter and another copy of the survey, were sent to participants who did not return their completed survey approximately 3 and 6 weeks after the initial mailing.
Measures
Demographic and disease characteristics
Participants were asked to provide information about their gender, date of birth, country of birth, Aboriginal or Torres Strait Islander status, marital and employment status, whether they hold a concession card, haematological cancer diagnosis, stage of disease and time since diagnosis.
Perceptions of optimal care for haematological cancer patients
Participants were presented with a list of 14 statements describing aspects of care related to the provision of information and support (e.g. “Having a record of what is discussed in each consultation”- see Table
2 for all items). Participants were asked to indicate their views about the importance of each statement in achieving optimal care for cancer patients. Responses were recorded on a 4-point Likert scale (1 =
not important to 4 =
essential). Several items were adapted from clinical practice guidelines for the psychosocial care of cancer patients [
29]. Additional items were purposely developed in consultation with haematological cancer specialist clinicians to explore the types of information and support strategies that patients perceive would be most important in improving cancer care.
Statistical analysis
Characteristics of participants and non-consenters were compared using F-adjusted Rao-Scott chi-square tests, adjusted for treatment centre. Frequencies and percentages were calculated for each item surveying the participants’ perception of optimal care. Responses were regrouped as Not important, Somewhat or quite important, or Essential. Statistical analyses were programmed using SAS v9.4 (SAS Institute, Cary, North Carolina, USA).
Discussion
This cross-sectional study examined the perceptions of haematological cancer patients about strategies that would assist them to obtain and understand information about their cancer, its treatment and its impact on their life. Overall, all of the statements presented were rated as important components of optimal cancer care by a majority of participants.
The item with the highest overall endorsement was sharing of accurate information with the participant’s general practitioner or family doctor. This finding aligns with previous research [
21,
22] and highlights the crucial role that patients perceive their general practitioner plays in their cancer care. There are a number of benefits to GP involvement in haematological cancer care, including often having a long-standing relationship with the patient, a more holistic knowledge of the cancer diagnosis in the context of the patient’s life and overall health and more time and training to recognise and respond to psychosocial needs [
6,
31]. Despite this, inadequate sharing of information has been reported by both general practitioners and patients as an issue, with some GPs voicing concerns about their patients ‘disappearing into the hospital’ when specialist haematological care is provided [
28]. This is particularly the case when patients from rural or remote areas have to seek treatment in larger metropolitan treatment centres. Collaborative systems of care that involve the cancer specialists and the GP working together with the patient and their family are widely agreed as the optimal model of care [
7,
27]. There is also strong evidence that GPs support this model and are committed to being involved in information giving, providing independent clinical advice and encouraging patient advocacy [
28]. Patient-held records have been proposed as one strategy to facilitate information exchange and communication between providers; however, a systematic review of 13 studies determined that they did not improve communication, patient health or satisfaction with care, primarily because of a low rate of uptake by healthcare professionals [
15]. It is critical that work continues to develop systems and processes that facilitate the efficient sharing of accurate information between haematological cancer specialists and GPs. A recent review identified no randomised controlled trials or literature reviews have been undertaken specifically examining models of survivorship care for haematological cancer patients [
39].
Being able to obtain up-to-date information specific to their circumstances was also deemed essential by a high proportion (43%) of participants. While the majority of cancer patients obtain most information about their cancer directly from their healthcare providers [
8,
33], a high proportion also obtain information from the Internet [
26,
33]. For example, one study of haematological cancer patients found that 52% had accessed the Internet in the past 12 months to obtain information about their cancer [
33] with a further 22% of participants requesting others access online health information on their behalf [
33]. While the proliferation of information on the Internet and its accessibility, means that sourcing information about cancer has never been easier [
32]; haematological cancer patients frequently report problems identifying credible information that is specific to their circumstances. The development of tailored, web-based information programs to support haematological cancer patients may offer a solution to the difficulties of navigating the plethora of information on the Internet [
37]. Such programs may be particularly valuable for outpatients who have less frequent contact with their health care providers.
Ease of contact with health professionals was also highly endorsed by participants. Overall, 34% of participants rated being able to call a health professional at the treatment centre where the patient was receiving care and being able to call an experienced health professional with knowledge of the individuals’ disease and its treatment, as essential elements of care. While many not-for-profit cancer charities in Australia and internationally provide telephone help lines to put cancer patients in contact with nurses and other allied health professionals, these are underutilised [
4,
14]. These findings suggest that patients may prefer to talk to someone from the healthcare service where they are receiving treatment, or with knowledge of their particular circumstances. While it may not be feasible for specialist clinicians to be available to address the concerns of patients as they arise, the important role care navigators can play in meeting the information and support needs of patients, as has been demonstrated with other cancer types [
13], deserves further exploration as a strategy to assist in information acquisition for haematological cancer patients, particularly in the early stages of the disease.
The least endorsed strategy was being able to connect by telephone, Internet or face-to-face with other people going through similar experiences, with only 10% of participants endorsing this as an essential component of care. This is an interesting finding given that previous research has found that haematological cancer patients indicate talking to others who are going through a similar experience as a frequent unmet need [
16,
17]. While patients may desire the ability to connect with others going through a similar experience, it is possible they do not perceive it to be a critical aspect of care. Peer-support programs are based on the premise that connecting with, and receiving support from, another person who has been diagnosed with cancer and been through a similar experience can result in significant benefits [
19]. Often, peer-support partners are matched according to the type of cancer to increase the relevance of the support that is provided. Peer-support programs delivered in various formats including telephone, face-to-face and via the Internet have been trialled, with mixed findings of effectiveness [
19].
Limitations
The low rate of completion of both surveys relative to the number of persons invited to participate (48.7% completion rate) may have impacted the representativeness of the sample. Although we collected data from participants about time since diagnosis, whether participants were currently undergoing active treatment was not assessed. It is possible that the perceptions of the importance of strategies for those currently undergoing treatment may be different than those who are in remission and/or in the survivorship phase of their cancer journey.
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