Support Care Cancer DOI 10.1007/s00520-013-2053-7
ORIGINAL ARTICLE
Identifying the supportive care needs of adolescent and young adult survivors of cancer: a qualitative analysis and systematic literature review Elena Tsangaris & Jessica Johnson & Rachel Taylor & Lorna Fern & Denise Bryant-Lukosius & Ronald Barr & Graeme Fraser & Anne Klassen
Received: 7 August 2013 / Accepted: 12 November 2013 # Springer-Verlag Berlin Heidelberg 2013
Abstract Purpose In Canada, adolescent survivors of cancer are treated mainly at pediatric centers, while young adults are treated at adult centers. Both care environments are reported as being inappropriate and do not fulfill the needs of adolescents and young adults (AYA). The purpose of this study was to investigate supportive care needs (SCN) of AYA survivors of cancer. Methods Qualitative description and a systematic literature review (SLR) were used to explore this topic. For the qualitative study, a purposive sample of AYA survivors (15 to Electronic supplementary material The online version of this article (doi:10.1007/s00520-013-2053-7) contains supplementary material, which is available to authorized users. E. Tsangaris Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, Ontario, Canada J. Johnson : R. Barr : A. Klassen (*) Department of Pediatrics, McMaster University, Room HSC 3N27, 1200 Main Street West, Hamilton, Ontario L8S 4J9, Canada e-mail:
[email protected] R. Taylor Cancer Clinical Trials Unit, University College London Hospitals NHS Foundation Trust & Department of Children’s Nursing, London South Bank University, London, England L. Fern National Cancer Research Institute, Teenage & Young Adult Clinical Studies Group, University College Hospitals NHS Foundation Trust, London, England D. Bryant-Lukosius School of Nursing, McMaster University, Hamilton, Ontario, Canada G. Fraser Department of Oncology, McMaster University and Juravinski Cancer Center, Hamilton, Ontario, Canada
25 years of age) was recruited from a pediatric and an adult cancer program in one area of Ontario, Canada. Interviews were conducted, recorded digitally, and transcribed verbatim. Line-by-line coding was used to establish themes and subthemes. The SLR entailed a systematic search of electronic databases from their date of inception to October 2011. Two screeners worked independently to screen abstracts, titles, and relevant full-text articles. Findings from both studies were synthesized. Results Twenty interviews were conducted for the qualitative study. For the SLR, 760 citations were identified, of which 12 met inclusion criteria. The most commonly reported SCN, from both studies, were social needs, information sharing and communication needs, and service provision needs. Conclusion Comparison of findings from both studies reveals many overlapping (e.g., entertainment for teens) and novel (e.g., collaboration) themes. Study results will be used to inform the potential development of a comprehensive healthcare program for AYA. Keywords Adolescent . Young adult . Cancer . Health . Supportive care . Needs
Introduction Cancer is diagnosed in over 2,000 adolescents and young adults (AYA) in Canada annually and accounts for approximately 2 % of all cancers combined [1–3]. The most common cancer categories reported in this age group are lymphomas, melanoma, sarcomas, leukemias, brain tumors, and cancers of the breast, thyroid, ovaries, testis, and colon [4]. The Canadian Cancer Society’s 5-year survival rate (1997– 2004) for all cancers in AYA (aged 15 to 29 years) was estimated to be approximately 83 %. However, survival rates
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vary considerably by cancer type, ranging from 61 % in leukemias to 99 % for thyroid cancers [1, 5]. Despite the low incidence of cancer in AYA, poor outcomes (e.g., quality of life) are evident for many cancer types and impose detrimental effects on society and the economy. Poor outcomes for some cancers in AYA are thought to be attributed to the biologically diverse nature of the disease [6], a lack of guidelines for access to care [6, 7], limited research aimed at understanding the impact of cancer across the care continuum, and on various aspects of the AYA developmental trajectory (i.e., social, psychological, physical) [5]. In Canada, children and young people who are diagnosed with cancer under the age of 18 years are usually referred to pediatric cancer centers that function under a family-centered model of care, while individuals 18 years of age or older are referred to adult cancer centers that use a disease-focused model [3, 6, 8]. Consequently, treatment settings and protocols for AYA with cancer vary as a result of arbitrary age restrictions imposed on place of care and the lack of specialization for treating AYA. Patient care may be compromised by the lack of expertise and inadequate infrastructure (e.g., resource availability) to provide access to clinical trials, both of which are critical components to better manage this age cohort [3]. The development of an AYA-specific cancer unit containing inpatient and outpatient services may provide invaluable specialized multidisciplinary care to this group of patients by combining experienced surgeons and specialized oncologists with supportive care teams (e.g., social workers, psychologists) [3]. In 2008, the Canadian Task Force on AYA with Cancer was established. The goals of this task force are to improve outcomes and health-related quality of life for AYA survivors with cancer diagnosed during childhood, adolescence, or young adulthood. The aims of the task force are as follows: to ensure immediate and equitable access to care for AYA Canadians; to optimize health outcomes; and to improve AYA quality of life during and after active treatment [9]. To date, the global development of AYA cancer programs has been ad hoc rather than systematic. It is not clear whether such approaches impact upon critical determinants of health and health outcomes in AYA patients because the few existing programs have not been evaluated rigorously. Discussion on how best to implement the recommendations of the task force is underway currently in Ontario. Establishing an AYAspecific program may be most appropriate to address the developmental needs of AYA with cancer [2]. Development of such a program could remove barriers engrained within current models of care and improve provider expertise [10]. This study was conducted as an initial step to inform the development of an AYA-specific program at the Hamilton Health Sciences (HHS) corporation. Understanding the supportive care needs (SCN) from the patient perspective, through qualitative interviews, is a critical first step to
developing a program that will address AYA needs effectively and enable optimal service delivery, outcomes, and quality of life. A systematic literature review (SLR) was conducted concurrently, to understand the scope of needs reported currently in the literature. The purpose of this research study was to identify the SCN of AYA survivors of cancer who were treated in one area of Ontario, Canada. This study was undertaken to gain a comprehensive understanding of the SCN from the patient’s perspective, providing information that could be used to inform the development of an AYA model of care in the HHS.
Theoretical framework and study design The theoretical framework used to guide this study builds upon the construct of human needs, described initially by Fitch [11] as the Supportive Care Needs Framework [11, 12]. Fitch defines supportive cancer care as “the provision of the necessary services as defined by those living with or affected by cancer to meet their physical, social, informational, psychological/emotional, spiritual and practical needs during the pre diagnostic, diagnostic, treatment and follow-up phases of cancer care, encompassing issues of survivorship, palliation and bereavement.” The definition of needs by Foot [13] was used to guide the present study. Foot defines a need as “a requirement for some action or resource that is necessary, desirable, or useful to attain optimal well-being.” The term survivor was used in accordance with the definition by Fitzhugh Mullan, in conjunction with the founding of the National Coalition for Cancer Survivors [14]. For this study, survivor was defined as anyone who has ever had cancer from the moment of diagnosis to the balance of his or her life, regardless of the ultimate cause of death. For this study, we employed the qualitative description (QD) method, which enabled us to describe the perceptions and experiences of participants directly, using the participant’s language [15]. This approach is inductive and suitable for identifying a problem, generating hypotheses, and developing concepts [15, 16]. A SLR was also employed that permitted a more comprehensive understanding and description of the research topic. Data collected from both methodologies were compared in the data interpretation phase [15, 17, 18].
Primary method: qualitative description Sample and setting Study participants were recruited from one primary referral pediatric and one adult cancer center in one area of Ontario, Canada. A maximum variation sampling strategy was employed (Table 1) [19–21] to ensure the inclusion of diverse
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study participants and information-rich cases, to allow a comprehensive examination of the phenomenon [15, 19, 22]. A pediatric oncologist and an adult hematologist obtained consent from eligible participants who were contacted later by a research team member to schedule an interview location and date. Eligible participants were those diagnosed between 15 and 25 years of age who could speak and understand English. Survivors with a significant cognitive impairment, as determined by the referring physicians, were excluded from the study. All study participants were reimbursed C$50 as a symbol of appreciation from the research team for their participation. Of 30 potential participants invited to participate in the study, 20 agreed to participate in an interview. Reasons for nonparticipation included lack of interest (n =3), the patient was too sick to participate (n =1), or we were unable to contact the person after at least three attempts (n =6). Non-study participants were mostly male (n =7) and had various types of cancers. Overall, 20 participant interviews were conducted by January 2012. Table 1 provides a summary of study participants and their demographic characteristics. Current age at the time of recruitment ranged from 15 to 29 years, and age at diagnosis was between 15 and 25 years. A total of 11 females and nine males were recruited. Most participants were Caucasian, had a high school education or less, and lived with their parent(s) or caregiver(s). The study was approved by the Research Ethics Board of both participating centers and was conducted in accordance with the Tri-Council Policy Statements “Ethical Conduct for Research Involving Humans.” All participants provided written informed consent or assent for participation. Participants were assured of anonymity and confidentiality and were informed that they could withdraw from the study at any time, and for any reason, with no effect on the care received. Methods Between September 2011 and January 2012, eligible participants were contacted and recruited for participation. Semistructured interviews were used to capture young people’s SCN. A preliminary codebook and interview guide were devised based on the Supportive Care Needs Framework. Participants were asked questions about how they coped with their diagnosis, whether they feel isolated because of their diagnosis, and their various informational, physical, practical, spiritual, social, and healthcare delivery needs. Our interview guide and preliminary codebook are given as online resources 1 and 2. The Supportive Care Needs Framework describes seven domains of supportive care as follows: physical, social, emotional, informational, psychological, spiritual, and practical.
Interview questions were open ended to encourage participants to talk about issues in greater depth [23]. Questions related to the needs of AYA cancer survivors from a patient perspective addressed the following topics: client/familycentered care needs, physical needs, psychological/emotional needs, coping needs, health behavior needs, social needs, informational needs, health facility needs, and any other needs thought to be relevant to participants. Additional probes were used to identify positive and negative aspects of their experience. Interviews were recorded digitally and transcribed verbatim, and any identifying information (e.g., hospital location, names) was removed. Analysis Data collection and analysis took place concurrently, allowing revision of the interview guide, gathering of new data, and refining the emerging themes and subthemes [24]. Analysis involved moving line-by-line through each transcript, applying themes from the preliminary codebook, and developing new themes. The codes created were ones that remained close to participants’ descriptions as in the manner used in QD and were not interpretive [15]. Codes were organized and refined using the constant comparison method to allow for the development of themes and subthemes [15]. Interviewing continued until no new codes and categories emerged. QSR NVivo 8 software was used to code, store, and manage data [25]. Rigor in analysis was assured through applying methods reflecting credibility, confirmability/auditability, and transferability [24, 26–28]. To ensure that participants’ statements were represented accurately, the first author (ET), who conducted data analysis, needed to set aside any previous knowledge or insights gained from prior experiences working with other pediatric cancer cohorts and any preconceived thoughts. According to the original work of Morse and colleagues [26], verification strategies to ensure rigor in our qualitative research included the following activities: (1) methodological coherence was addressed by ensuring that our research question matched the methods and that the methods matched the data and the analytic procedures; (2) ensuring that the sample was appropriate, by including participants who best represented, or had knowledge of, the research topic; (3) collecting and analyzing data concurrently, to form a mutual interaction between what is known and what one needs to know; (4) thinking theoretically, ensuring that ideas emerging from the data were reconfirmed in the new data, to give rise to new ideas that, in turn, were verified by the data collected already; and (5) developing theory by moving with deliberation between a micro perspective of the data and a macro conceptual/ theoretical understanding. To further promote trustworthiness of the findings, credibility, confirmability, and transferability were used [24, 27, 28]. Credibility was supported through the use of data triangulation and peer debriefing [24]. For this
Support Care Cancer Table 1 Participant demographics from our qualitative study Characteristic
Current age Adolescent (15–18) Young adult (19–29) Age at diagnosis Adolescent (15–18) Young adult (19–25) Gender Male Female Treatment stage On Off Ethnicity Caucasian Other Type of treatment Chemotherapy only Combination (chemotherapy, radiation, and/or surgery) Relapse Yes No Comorbidity Yes No Diagnosis Acute lymphoblastic leukemia Bone cancer (e.g., osteosarcoma, Ewing’s sarcoma) Brain tumor (e.g., astrocytomas) Colon cancer Lymphomas (e.g., Hodgkin’s and non-Hodgkin’s Testicular cancer Thyroid cancer Patient education level (completed) Less than high school High school College Bachelor Masters Patient living status Parents/caregiver Partner Friends Patient working status Yes No
Table 1 (continued)
Number of participants (n =20)
Percent
9 11
45 55
12 8
60 40
9 11
45 55
7 13
35 65
16 4
80 20
5 15
25 75
2 18
10 90
3 17
15 85
4 4
20 20
2 1 7
10 5 35
1 1
5 5
1 11 1 6
5 55 5 30
1
5
15 4 1
75 20 5
Characteristic
Patient relationship status Single In a relationship/married Unknown Household social economic status (SES)
