The Doctor–Patient Relationship in the Adolescent Cancer Setting: A Developmentally Focused Literature Review

Abstract

Several national reports and many individuals in the clinical oncology community have defined the adolescent and young adult (AYA) cancer population as individuals diagnosed between the ages of 15 and 39. However, neuroscience and developmental research have identified important decision-making skills (e.g., information processing, reasoning, emotion regulation) that are not fully developed during adolescence, making general, AYA-focused doctor–patient interaction guidelines potentially questionable for the adolescent cancer population. Most studies include adolescents in samples of pediatric cancer patients or include adolescents in samples of young adult cancer patients, but studies rarely consider adolescent cancer patients as a distinct, developmentally unique group. A systematic literature review was undertaken in October 2014 to begin to understand what is known about the doctor–patient relationship and communication preferences within adolescent oncology. From the 25 included studies, three important conclusions emerged: (1) discrepancies among adolescent patients, parents, and providers about the desired extent of involvement in treatment-related decisions; (2) patient desire for developmentally and culturally appropriate information provision; and (3) the desire and preference for how information is delivered, with recognition that these preferences may change with age. There was some variation in themes by study design, with studies directly observing medical consultations reporting less adolescent involvement in discussions than studies that surveyed doctors. The results of this review support the need for developmentally focused research and clinical guidelines that emphasize the experience of adolescent cancer patients separate from their older and younger counterparts.

The National Cancer Institute (NCI) defines the adolescent and young adult (AYA) cancer population as individuals diagnosed with cancer between the ages of 15 and 39.¹ Compared with their older and younger counterparts, the AYA cancer population often requires more intense and developmentally appropriate psychosocial services that cover a broad range of topics, such as self-esteem, body image, and distress.¹ Moreover, because of the developmental variability (physical, cognitive, emotional, social, psychological, etc.) within the AYA group, the NCI and the Lance Armstrong Foundation (LAF) emphasize the importance of considering within-group differences in the AYA cancer population.¹ Since AYA patients will spend much of their time during treatment interacting with doctors, nurses, and other medical staff, doctor–patient relationships and communication patterns are important avenues for providing this more nuanced care. Therefore, this systematic literature review will examine the extant research on the doctor–patient relationship of adolescent cancer patients, a specific segment of the AYA population that, due to developmental differences, may require a tailored approach to their cancer care.

Adolescence is a period of transition from the dependence of childhood to the independence of adulthood, and begins at puberty, typically around the age of 12, with hormonal and physical changes.^2,3 There is currently no agreed upon definition of “adolescent” within the cancer field due to developmental variability within this period of time,⁴ making it difficult to focus on this population's specific cancer care needs. Adolescence is characterized by important cognitive and social changes that are unique to this developmental period, making it important to consider this population separate from their older and younger counterparts within the cancer setting.⁵

Adolescents experience a number of individual changes during this stage of development, including improvement in reasoning skills and information processing abilities.⁶ Abstract and hypothetical thinking develops throughout early adolescence and into middle adolescence. By late adolescence individuals are able to utilize foresight, consider multiple sources of information when making decisions, plan ahead, and set goals and achieve them.^3,6–9 It is likely that these cognitive improvements allow adolescent cancer patients to process and utilize complex information to help make decisions concerning their healthcare. However, these improvements in ability to plan ahead and consider multiple sources of information continue into young adulthood.¹⁰ Therefore, although adolescent brain function has matured from early and middle childhood, there are still some important functions that are developing as they enter the later teenage years.

Another important task of adolescence is the development of autonomy and independence¹¹ within the context of supportive parental relationships that provide the opportunity for adolescents to develop their own beliefs and values.^12–16 Within the context of chronic illnesses such as cancer, parents are often faced with significant pressure to make critical decisions for their children and face unmet support needs and guilt over making these medical decisions, which can ultimately have a negative impact on their own health status.^17–23 The unique role played by parents in the adolescent cancer setting and the pressures they face make it important to consider their role in the doctor–patient relationship as well.

Previous reports focused on individuals aged 15–39^1,24 provide a point of entry for researchers to develop more nuanced approaches to specific age groups within the wide AYA population. Adolescents are beginning to gain important decision-making skills, develop a sense of autonomy, and experience changes in their parent–child relationships. Therefore, adolescents need developmentally appropriate support from their parents and healthcare providers. This systematic literature review begins to discern the specific, unique experience of the doctor–patient relationship by adolescent cancer patients diagnosed with cancer between the ages of 12 and 18.

Methods

A systematic literature search was conducted in October 2014 using the PubMed and PsycINFO databases. Combinations of the following search terms were utilized in order to conduct a broad search for relevant articles: doctor patient communication, doctor patient relationship, doctor patient interaction, pediatric cancer, childhood cancer, adolescent and young adult cancer, adolescents, adolescence, theory, cancer, communication skills, chronic illness, family communication, and illness. Articles were limited to those written in English and published within the last 10 years for the most up-to-date review of the literature. The following additional inclusion criteria were also established for studies included in this review: (1) sampled adolescent cancer patients, (2) focused on patient outcomes or experience of the doctor–patient relationship, and (3) utilized quantitative or qualitative research methods.

Adolescent cancer patients were operationally defined as individuals diagnosed with cancer between the ages of 12 and 18. This definition varies from the NCI definition of 15–39 years of age for three important reasons. First, developmental research suggests that puberty (the start of adolescence) typically occurs around the age of 12,^2,3 and in order to examine how doctor–patient relationships may vary across the entirety of adolescence, it is important to include patients in early adolescence. Second, in many countries, 18 is the age of adulthood and the point when patients are allowed to make their own independent medical decisions, placing them in a different position from those individuals under the age of 18 when it comes to the role they can play within the doctor–patient relationship. Finally, there are cross-cultural variations in the definition of “adolescent,” and in order to include studies from any country, an age range was chosen to account for these variations.²⁵

Studies that focused on cancer screening or prevention in adolescent populations were not included, as the focus of this review was on the doctor–patient relationship within the oncology setting, and most screening and prevention conversations are done in the pediatric or general practice setting. Excluding cancer prevention and screening studies, published studies that focused on adolescents at any phase of the cancer care continuum were eligible for inclusion in this review. Studies that were conducted with doctors or parents were eligible for inclusion if they clearly stated the age range of the patients they worked with/cared for or the questions specifically targeted the experience of patients between 12–18 years of age. Finally, studies that were conducted in other countries were also included to allow for the broadest understanding of the experience of the doctor–patient relationship in adolescent oncology. Exclusion criteria for this review included articles focused on theories, case studies, policy recommendations, and commentaries.

The initial search retrieved 1268 potential articles. Titles and abstracts were downloaded for all 1268 articles and reviewed. A review of the titles and abstracts eliminated 986 articles for not meeting inclusion criteria. Next, the full texts of 282 articles that appeared to meet the inclusion criteria were downloaded. After review of the full texts of the articles for eligibility, an additional 257 articles were eliminated for not meeting inclusion criteria. A total of 25 articles were reviewed for this paper. A flow chart of the search and selection process can be found in Figure 1.

FIG. 1.

Literature review search process. The above figure includes information concerning the review, exclusion, and inclusion of all articles in this systematic literature review. From the top of the figure down, the first box represents the total number of articles identified using the search terms. The second box represents the number of titles and abstracts reviewed. The third box (arrow pointing to the right of page toward this box) represents the number of articles excluded based on title and abstract review and main reasons for exclusion. The fourth box represents the number of full-text articles reviewed. The fifth box (an arrow pointing to the right of page toward this box) represents the number of articles excluded based on full-text review and the main reasons for exclusion. The final box represents the final number of articles included in the literature review.

Of the articles downloaded for full text review, the most common reasons for article exclusion were not having adolescents in the study sample (n=188), neither quantitative or qualitative research design (i.e., theoretical paper, policy paper, commentary, etc.; n=27), and no focus on patient outcomes or experience of the doctor–patient relationship (n=27). Because the goal of this review was to examine the unique experience of patients between the ages of 12 and 18, a conservative approach for inclusion based on sample age was taken. Specifically, if an article described a sample with an age range that included individuals between the ages of 12 and 18 along with older or younger patients, articles were only included if the authors specifically described results in terms of age groups or the mean sample age was between the ages of 12 and 18. Details of the articles discussed in this review are described in Table 1.

Table 1.

Characteristics of Reviewed Articles

Citation	Location of study	Sample size	Age of patients	Individuals included in sample (i.e., patient, parent, or doctor)	Topic of interest	Data collection method	Stage of cancer care continuum
Anderson RA et al. (2008)	United Kingdom	1030 patients	Range: 2–25	Doctors	Discussion of fertility issues	Questionnaire	Treatment
Aziz NM et al. (2006)	United States and Canada	24 directors	Survivors younger than age 25	Directors of pediatric oncology long-term follow-up care programs	Characteristics of long-term follow-up care for pediatric oncology	Questionnaire	Survivorship
Baker JN et al. (2013)	United States	20 patients 57 parents	Adolescents age 14–21	Patients Parents	Informed consent process for phase I clinical trials	Semi-structured interviews	End-of-life care
Bell CJ et al. (2010)	United States	103 patients	Age at death mean: 14.4 (range: 10–21)	Medical chart review	End-of-life experience in adolescent cancer patients	Medical chart review	End-of-life care
Chapple A et al. (2007)	United Kingdom	18 patients	Range: 16–26	Patients	Communication problems concerning fertility issues	Narrative interviews	Treatment and survivorship
Clemente I (2007)	Spain	17 consultations	Range: 3–18	Patients Doctors	Doctors' use of partial information disclosure in oncology setting with adolescents	Observations	Treatment
de Vries MC et al. (2010)	Netherlands	15 doctors	Adolescents defined as individuals between the ages of 10 and 18 years	Doctors	Involvement of adolescents in decision-making concerning research participation	Semi-structured interviews	Treatment
Engelen V et al. (2012)	Netherlands	94 intervention group 99 control group	Adolescents defined as individuals between the ages of 12 and 18 years	Patients Parents Doctors	Follow-up visit intervention evaluation in pediatric oncology	Audio recordings and questionnaires	Survivorship
Fernandez CV et al. (2009)	United States and Canada	86 patients 409 parents	Median age: 18 (range: 12–22)	Patients Parents	Interest in receiving the results of research studies in pediatric oncology	Questionnaire	Treatment and survivorship
Goodwin T et al. (2007)	United States	30 healthcare providers	Not specified	Doctors Nurses	Fertility issues in pediatric oncology	Questionnaire	Not specified
Hedström M et al. (2006)	Sweden	53 patients 48 doctors 53 nurses	Range: 13–19	Patients Doctors Nurses	Healthcare providers' ability to correctly assess distress, anxiety, and depression in adolescent cancer patients	Structured phone interviews	Treatment
Hinds PS et al. (2005)	United States and Australia	20 patients	M=17 years, 4 months (range: 10–20)	Patients	Decision-making and end-of-life care in pediatric cancer patients	Interviews	End-of-life care
Miller VA et al. (2014)	United States	61 patients	M=13.34 (range: 7–21)	Patients	Involvement in the informed consent process for phase I clinical trials	Observations and patient interviews	End-of-life care
O'Connor N et al. (2013)	Ireland	92 parents	M=9 (range: <1–18)	Parents	Use of complementary and alternative medicine in pediatric oncology	Questionnaire	Treatment and survivorship
Parson SK et al. (2007)	United States and Japan	350 United States doctors 362 Japanese doctors	Focus on patients aged 10–17	Doctors	Cross-cultural comparison of diagnosis disclosure in pediatric oncology	Questionnaire	Diagnosis
Quinn GP and Vadaparampil ST (2009)	United States	24 doctors	Adolescents defined as individuals between the ages of 12 and 18 years	Doctors	Communication barriers to discussion of fertility issues in adolescent and young adult cancer patients	Semi-structured interviews	Treatment
Ringnér A et al. (2012)	Sweden	16 patients 25 parents 25 doctors	Patient's median age: 11 (range: 1.5–18)	Patients Parents Doctors	Observe the interactions between parents and doctors in pediatric oncology	Observations	Treatment
Seth T (2010)	India	23 parents	Patient's age mean: 13 (range: 10–18)	Parents	Diagnosis disclosure and decision-making participation in pediatric oncology	Interviews	Diagnosis and treatment
Stinson JN et al. (2012)	Canada	29 patients 30 parents 22 doctors	Range: 12–18	Patients Parents Doctors	Self-management needs of adolescent cancer patients	Semi-structured interviews and focus groups	Treatment and survivorship
Talati ED et al. (2010)	United States	421 doctors	11 and 16	Doctors	Refusals for cancer treatment in minors	Vignettes	Treatment
Weyl Ben Arush M et al. (2006)	Israel	26 patients 74 parents	Mean: 11.4	Patients Parents	Use of complementary and alternative medicine in pediatric oncology	Interviews	Treatment and survivorship
Yap TY et al. (2010)	United States	103 doctors	Not specified	Doctors	Informed consent process for phase I clinical trials	Questionnaire	Treatment
Young AJ et al. (2010)	United States	3 patients 6 parents 6 doctors 8 nurses	Range: 13–22	Patients Parents Doctors Nurses	Informed consent process for clinical trials	Focus groups	Treatment
Zwaanswijk M et al. (2007)	Netherlands	7 patients 11 parents 18 survivors	Age 8–17 at diagnosis	Patients Parents Survivors	Decision-making preferences in pediatric oncology	Online focus groups	Treatment and survivorship
Zwaanswijk M et al. (2011)	Netherlands	34 patients 59 parents 51 survivors	Age 8–16 at diagnosis	Patients Parents Survivors	Communication preferences in pediatric oncology	Vignettes	Treatment and survivorship

Results

The current systematic literature review revealed three major themes of the doctor–patient relationship among adolescent cancer patients: (1) treatment decision making, (2) information provision, and (3) relationship preferences of adolescent patients with their medical providers.

Treatment decision making

Treatment decision making is one of the most important aspects of cancer care and encompasses all decisions made, both major and minor, concerning an adolescent's medical care, and there should be ample time to make informed decisions.^26,27 The reviewed studies, however, highlighted an incongruity between adolescents' opinions concerning their involvement in treatment decision-making and the opinions of their parents and physicians. Hinds et al.²⁸ (n=20), Stinson et al.²⁹ (n=29), and Zwaanswijk et al.³⁰ (n=25) analyzed the responses of adolescent cancer patients both on and off treatment and found that adolescents preferred to be involved in decision making, believed they should make the final decision concerning treatment, believed they should advocate for themselves, and that they were pleased with their decision if they were able to “do what they wanted” (p. 9151).²⁸ Teens (n=3) also wanted the opportunity to sign the consent form for clinical research enrollment in order to have some control over the decision.³¹

Despite these preferences of adolescent patients, with the exception of two studies,^32,33 the articles addressing treatment decision making that included the perspective of someone other than the patient suggested that adolescents were not or should not be involved in treatment decision making.^31,34,35 For example, Miller et al.³⁵ observed informed consent conferences (ICCs) for Phase I clinical trials between adolescent cancer patients (age range: 7–21 years), their parents, and the doctor. The authors observed 85 ICCs at six different U.S. hospitals, and calculated the total percentage of the ICC that included dialogue with the adolescent patient. An interaction was considered to involve the patient if the parent or doctor was speaking directly to the patient or the patient was speaking directly to the parent or the doctor. They found that although the vast majority of adolescents were present for part or all of the informed consent process, only 43% of the communication within the ICC involved the adolescent patient. The patient was asked directly about their decision concerning trial enrollment in 66% of the ICCs, the patient provided their preference concerning trial enrollment in 67% of the ICCs, and the physician or parent requested that the patient sign the consent form in 49% of the ICCs. Within these informed consent meetings, communication directly between the patient and physician increased with patient age.

Talati et al.³² examined doctors' reactions to medical treatment refusal in minors through a vignette study. Doctors read vignettes that varied in three main ways: prognosis (80% 5-year survival rate vs. 15% 5-year survival rate), who refused (parent, minor, or both), and the age of the minor (11 years vs. 16 years). In the “good prognosis” scenario, the majority of doctors would treat in spite of a refusal in all possible scenarios. Of those doctors who would not treat, they were more likely to accept the refusal of the 16-year-old patient compared with the 11-year-old patient. Doctors were more likely to accept treatment refusal in the “poor prognosis” patient in all possible scenarios. Within this scenario, when a parent and minor differed on their preference for treatment, the majority of doctors would respect the wishes of the 16-year-old patient. In addition, more than half of the doctors believed the 16-year-old patient was the primary decision maker, whereas 98% of the doctors in this study believed the parent was the primary decision maker for the 11-year-old patient. Yap et al.³³ surveyed 103 doctors about their experience of clinical trial consent meetings, and found that the average age doctors believed patients should be involved in the consent discussion was 10 years of age, and the average age doctors believed patients should be involved in the decision-making process was 12 years of age.

However, some studies reported that parents and doctors felt that they should control the treatment-related information provided to the adolescent.^31,34,36 There were cultural variations among these findings. The studies conducted by Seth³⁶ with parents and de Vries et al.³⁴ with doctors both reported a preference to restrict the information given to adolescent patients. These studies were conducted in India and the Netherlands, respectively. The roles held by parents, doctors, and adolescents may differ in these countries compared with the United States, making it important for doctors to consider the cultural background of the family they are working with and tailor their communication patterns to abide by important cultural values.

Information provision

Despite the common practice to focus information provision on the parents,²⁹ adolescents want information directly from their providers about cancer as a disease, available treatments, physical therapy (for rehabilitation), complementary and alternative medicine, psychological therapy, fertility status, fertility preservation, long-term effects of treatment, and survivorship care.^{27,29,37–39} In individual and focus group interviews, adolescents discussed the importance of doctors and nurses providing information directly to them in a developmentally appropriate manner.^29,30

One of the most common issues discussed within the adolescent cancer population was fertility.^27,40–42 Overall, doctors report that it was an important issue to discuss with all patients,^40–42 and more than 60% of healthcare providers report discussing fertility issues with their adolescent patients.^40,41 Doctors reported that their likelihood of discussing fertility with adolescent patients varied based on age, pubertal status, and the likelihood that their treatment would cause future problems with fertility.^40–42 Additionally, doctors reported a variety of barriers to providing information about fertility or fertility preservation to this age group, including lack of access to preservation treatments, the financial burden of fertility preservation treatments, and doctors' belief that both adolescents and their families do not want information about fertility.⁴² However, in the articles that reported discussions about fertility, four focused on the perspective of doctors who provided care to adolescent patients, one focused on the perspective of the patient, and no studies examined the opinions of family members.

Chapple et al.²⁷ discussed fertility from the perspective of the patient. Although their sample (n=18) of male patients included individuals diagnosed after the age of 18, responses provided by those participants diagnosed between the ages of 12 and 18 suggest that they would have liked additional counseling and information at the time of treatment concerning fertility issues. Despite the contribution of this study, it focused only on male respondents. With only the doctors' perspectives, the above research might indicate that discussions of fertility occur more frequently with adolescent patients. However, Chapple et al.'s²⁷ findings suggest that this may not be the case, and without more information from the patient's or the family's perspective, it is not possible to know if the barriers reported by doctors concerning the patient or family's desire for fertility information are accurate.

In responses to vignettes of different clinical oncology visits/experiences, adolescent patients on and off treatment and their parents preferred information to be given to both the patient and the parent simultaneously, but they reported that an 8-year-old patient should receive information at a different time from their parents compared with a 12-year-old patient.⁴³ In making decisions concerning clinical trial enrollment, adolescent patients reported that doctors' thorough description of the trial along with receipt of written information about the trial was beneficial in their decision-making process.²⁸ Baker et al.²⁶ conducted qualitative interviews with adolescent patients and their parents about enrollment in clinical trials, and found that both parents and adolescents wanted more information about the risks and benefits of the trial, wanted the information provided in a straightforward, developmentally appropriate manner, and wanted user-friendly consent forms. Baker et al.²⁶ also found differences in the priorities of parents and the priorities of adolescents when discussing clinical trial enrollment.

Intervention research has also begun to examine the importance of information provision in adolescent cancer patients. Engelen et al.⁴⁴ had adolescent cancer patients (n=193) fill out a health-related quality of life (HRQOL) form prior to a follow-up consultation. Doctors in the intervention group (n=94 patients) were then provided with this form prior to the patient's consultation. The authors found that quality of life dimensions were discussed more often within intervention group consultations compared with the control group consultations, and significantly more HRQOL problems in need of services were identified by providers in the intervention group.

The reviewed studies also found cultural variations in how much information adolescents may want to receive, or may actually receive, about their cancer and related treatment.^30,36,45 Although studies suggest that information about cancer and its treatment is usually directed toward parents,²⁹ a cross-cultural study conducted by Parsons et al.⁴⁵ suggests that pediatric oncologists in the United States at least disclose the diagnosis to their adolescent patients, even if additional information is provided to the parents. In contrast to many of the other studies described, the U.S. pediatric oncologists in this study believed that information provision was highly important because it increases adolescents' participation in their cancer care, an important aspect of the healthcare transition that adolescents will face when they move to the adult healthcare setting. Fewer than half of the pediatric oncologists in Japan, in contrast, regularly disclosed the diagnosis to their adolescent cancer patients.⁴⁵ Additionally, most parents in India preferred to keep the cancer diagnosis from their adolescent children.³⁶ These variations highlight the importance of understanding and integrating the values and preferences of individuals and families from different cultures, particularly in light of the current era of patient-centered care and the increasing cultural diversity in the U.S. population.

Doctor–patient relationship preferences of adolescent cancer patients

Patients emphasize the need for reassurance, respect for their decisions, support, trust, continuity of care, and empathy from their doctors across the cancer care continuum, regardless of prognosis or potential outcome.^28,30,43 Clemente⁴⁶ observed medical consultations with adolescent cancer patients, and found that doctors utilized a number of communication methods, such as narrow answers or nonanswer responses, in order to avoid answering adolescents' questions concerning their care and treatment.

Another observational study conducted at a hospital in Sweden analyzed interactions between pediatric and adolescent cancer patients, their doctors, and their parents.⁴⁷ The authors found that doctors utilized different communication patterns depending on the age of the patients. Most of the doctors utilized a child-centered approach, where they spoke directly to the patient, regardless of patient age. However, a family-centered approach was more commonly utilized with adolescent patients. Within the family-centered approach, doctors interacted with the family as a unit, and every family member's needs and concerns were addressed by the doctor.

Another important aspect of the doctor–patient relationship is the ability of the doctor to recognize signs of distress. The current healthcare setting, however, is lacking formalized training on the needs of adolescent patients, making it difficult for healthcare providers to identify distress in their patients. Hedström et al.⁴⁸ surveyed 53 adolescents with cancer, their nurses, and their physicians to analyze any discrepancies between adolescents' reports of distress and the nurses' and physicians' observations of distress in the same adolescents. Overall, the physicians and nurses were sensitive to a number of areas of patient distress, but both groups underestimated adolescent distress in two of the areas that adolescents viewed as the most distressing (i.e., worry about missing school and mucositis).

Adolescents also report a desire for doctor–patient relationship characteristics commonly described by adult cancer patients, including empathy when delivering poor prognosis, open and honest communication, sufficient time to discuss issues with their doctor, and having their salient questions answered.^28,30,43 Bell et al.⁴⁹ found no difference between early, middle, and late adolescent patients in the timing of end-of-life discussions. However, the authors of this study examined data from medical records and patient chart reviews, and noted that very few charts clearly identified if the patients were involved in these discussions, making it difficult to determine if the lack of age differences was due to lack of involvement in the decision by the patient. Although there are some similarities in the preferences for the doctor–patient relationship in adolescent cancer patient, there are differences in the communication patterns utilized by doctors when talking to adolescent patients,⁴⁷ and some discrepancy in doctors' ability to identify areas of distress in adolescent cancer patients.⁴⁸

Discussion

The studies reviewed in this paper highlight the importance of understanding the fluidity of adolescent, family, and provider interactions during the illness experience^34–36 due to a disconcordance between the views of parents and their adolescents, as well as providers, on a number of important cancer care topics such as decision making³⁶ and information provision.²⁶ Patient-centered care, a model of care researched within adult cancer populations, includes providing information to patients, understanding the patient's perspective, respecting the patient's psychosocial context, and sharing power and responsibility with the patient as important aspects of cancer care.⁵⁰ However, research examining patient-centered care often does not consider the role of the patient's psychosocial context.⁵¹ As highlighted within this review, the role of developmental change and family relationships are important and necessary considerations within the adolescent oncology setting.

A clinical model, the Family Systems Illness Model,⁵² provides a strong starting point for understanding both the similarities and differences between adolescent patients and other segments of the cancer population. The Family Systems Illness Model describes the importance of the family as the central focal point of the illness experience, and encourages healthcare providers to engage actively with both the patient and the family. Of particular interest, Rolland⁵² highlights the need to consider the individual development of the patient, specifically their stage of life (i.e., adolescence) and the tasks that accompany that stage of development (i.e., gaining autonomy), and the stage of the family life cycle (i.e., families with adolescents) and the tasks that accompany that stage (i.e., increasing the flexibility of family boundaries and shifting parent–child relationships). As reported in this review, adolescents' desire an increased role in decision making as they age,^30,43 and doctors in some reviewed studies supported this increased participation in decision making across time.^32,33 This increased role in decision making is imperative to achieve certain developmental milestones such as autonomy and independence,¹¹ and requires changes in the parent–child relationship as well.⁵² This increased role is also important clinically,²⁹ as adolescents will be expected to take on an increased role in their healthcare as they transition into the adult healthcare setting. Because adolescent patients are still minors and final medical decisions are made by the parents,^53,54 parents must work with doctors in order to provide space for adolescent involvement in the decision-making process.

Therefore, incorporating the importance of family relationships and developmental changes into a patient-centered framework is important. Research examining patient-centered care suggests that this model of care is associated with a number of positive physical and psychosocial outcomes in various chronic illness populations.⁵¹ However, most of this research has been conducted with adult populations, making it difficult to determine if this model of care is appropriate for adolescent populations. The Family Systems Illness Model takes into consideration the important changes during adolescence, and by incorporating these domains into the evidence-based, patient-centered care model often tested in the literature, we can begin to examine the most tailored, appropriate model of care for adolescent cancer patients.

Information tailored to the developmental stage and interests of adolescent cancer patients is one way in which doctors can begin to maintain the family as the center of the cancer experience. Information provision tailored to the adolescent provides an avenue for adolescents to play a role in their cancer care in conjunction with their parents, and strategies, such as those described in Engelen et al.,⁴⁴ that allow adolescents to provide their doctors with information open up a more direct role for adolescents within the cancer setting. Additionally, Baker et al.²⁶ found that parents and adolescents had differing preferences for information concerning clinical trial enrollment. It is therefore imperative for future studies to consider multiple viewpoints within the adolescent cancer setting, including the patient, their family, and their healthcare provider.

Cross-cultural research suggests that there are differences in how much or how little parents want to disclose a cancer diagnosis to their pediatric and adolescent children,^45,55 and diagnosis and poor prognosis are not always routinely disclosed to patients, regardless of age, in many countries outside the United States.^56–60 Reviewed studies conducted in India,³⁶ the Netherlands,³⁴ and Japan⁴⁵ concur with these cultural variations, and found that parents and doctors reported restricting the information provided to adolescent cancer patients. These findings also support the importance of considering patients' psychosocial context when examining the doctor–patient relationship; the potential variations in these cultural belief systems are important to consider, as they may highlight the need for alterations in the communication patterns utilized with these families.

The current review provides a foundation for understanding the doctor–patient relationship in adolescent oncology. As we continue to move toward patient-centered and family-centered approaches to research and clinical care, this review can serve as a source of knowledge of the unique issues of the adolescent cancer population, some of which are similar to other age groups and others that are distinct. A strength of the extant literature is the variety of perspectives sampled within the described articles. Specifically, articles sampled adolescent cancer patients currently on treatment, adolescent cancer patients who have completed treatment, their parents, and their doctors about different issues concerning the doctor–patient relationship. As was highlighted throughout the review, these differing perspectives provided a rich picture of the doctor–patient relationships within the adolescent cancer setting. In a number of articles, the reports of doctors and parents did not agree with the adolescents' report of the same situations.^27,40–42 Because of the developmental stage and legal rights of adolescent patients, the parents and doctors are also important participants within the medical consultation in the adolescent cancer setting. It is only through a collaboration between the adolescent, parent, and healthcare provider that adolescents will be able to participate within the medical consultation in a larger capacity, making it important for future studies to consider the perspectives of all three members of the medical consultation in the adolescent oncology setting.

The studies reviewed in this paper also had some limitations. Specifically, many of the studies included small sample sizes, did not statistically test for differences in age groups, and utilized heterogeneous age samples. These limitations are particularly relevant to the interpretation of findings from the current review because the few studies that did statistically test differences in age groups demonstrated significant differences in doctor–patient relationship preferences.^32,43 Therefore, it is imperative that future research places a particular focus on examining these differences within adolescent patients, as well as differences between adolescent patients and their pediatric and adult counterparts.

This review provides an informative starting point for future research examining the unique experiences of adolescent cancer patients. Within the context of adolescent oncology, the doctor needs to manage the needs of the parent(s) as well as the needs of the adolescent patient. This balancing act can be challenging, and is often not the focus of medical education, making it difficult for doctors to handle this triadic relationship effectively. However, by considering the family's cultural beliefs, family life stage, and individual development, doctors can be better equipped to provide tailored, sensitive care to adolescent cancer patients and their families.

Footnotes

Acknowledgments

The authors would like to thank Cameron Froude, PhD, LMFT, for her feedback and suggestions on earlier drafts of this manuscript.

Author Disclosure Statement

No competing financial interests exist.

References

Adolescent and Young Adult Oncology Progress Review Group. Closing the gap: research and cancer care imperatives for adolescents and young adults with cancer (NIH Publication No. 06-6067). Bethesda, MD: Department of Health and Human Services, National Institutes of Health, National Cancer Institute, and the LIVESTRONG Young Adult Alliance; August 2006. Accessed January 15, 2015 from: http://planning.cancer.gov/library/AYAO_PRG_Report_2006_FINAL.pdf

Berger

. The developing person: through the life span. New York, NY: Worth Publishers; 2005.

McNeely

, Blanchard

. The teen years explained: a guide to healthy adolescent development. Baltimore, MD: Center for Adolescent Health at Johns Hopkins Bloomberg School of Public Health; 2009.

Quinn

, Murphy

, Knapp

, et al. Who decides? Decision making and fertility preservation in teens with cancer: a review of the literature. J Adolesc Health., 2011; 49:337–46.

Steinberg

, Cauffman

, Woolard

, et al. Are adolescents less mature than adults? Minors' access to abortion, the juvenile death penalty, and the alleged APA “flip-flop.”. Am Psychol., 2009; 64(7):583–94.

Collins

, Steinberg

. Adolescent development in interpersonal context. In: Handbook of child psychology: vol. 3, social, emotional, and personality development. Eisenberg

, Damon

, Lerner

(Eds); Hoboken, NJ: John Wiley & Sons, Inc.; 2006; pp. 1003–67.

Bonnie

, Scott

. The teenage brain: adolescent brain research and the law. Curr Dir Psychol Sci., 2013; 22(2):158–61.

Mello

, Bhadare

, Fearn

, et al. The window, the river, and the novel: examining adolescents' conceptions of the past, the present, and the future. Adolescence., 2009; 44(175):539–56.

Piaget

. Intellectual evolution from adolescence to adulthood. Hum Dev. 2008;51:40–7. Reprint of Hum Dev., 1972; 15:1–12.

10.

Steinberg

. Should the science of adolescent brain development inform public policy. Am Psychol., 2009; 64(8):739–50.

11.

Van Petegem

, Beyers

, Vansteenkiste

, Soenens

. On the association between adolescent autonomy and psychosocial functioning: examining decisional independence from a self-determination theory perspective. Dev Psychol., 2012; 48(1):76–88.

12.

Benish-Weisman

, Levy

, Knafo

. Parents differentiate between their personal values and their socialization values: the role of adolescents' values. J Res Adolesc., 2013; 23(4):614–20.

13.

Grotevant

, Cooper

. Individuality and connectedness in adolescent development: review and prospects for research on identity, relationships, and context. In: Personality development in adolescence: a cross national and life span perspective. Skoe

EEA

, von der Lippe

(Eds); Florence, KY: Taylor & Frances/Routledge; 1998; pp. 3–37.

14.

Kagitcibasi

. Adolescent autonomy-relatedness and the family in cultural context: what is optimal. J Res Adolesc., 2013; 23(2):223–35.

15.

Steinberg

. We know some things: parent–adolescent relationships in retrospect and prospect. J Res Adolesc., 2001; 11(1):1–19.

16.

Tamis-LeMonda

, Way

, Hughes

, et al. Parents' goals for children: the dynamic coexistence of individualism and collectivism in cultures and individuals. Soc Dev., 2007; 17(1):183–209.

17.

Bennett

, English

, Rennoldson

, Starza-Smith

. Predicting parenting stress in caregivers of children with brain tumours. Psychooncology., 2013; 22:629–36.

18.

Brinkman

, Sheran

, Zmitrovich

, et al. Parental angst making and revisiting decisions about treatment of attention-deficit/hyperactivity disorder. Pediatrics., 2009; 124:580–9.

19.

Chao

, Chen

, Wang

, et al. Psychosocial adjustment among pediatric cancer patients and their parents. Psychiatry Clin Neurosci., 2003; 57:75–81.

20.

Guerriere

, McKeever

, Llewellyn-Thomas

, Berall

. Mothers' decisions about gastrostomy tube insertion in children: factors contributing to uncertainty. Dev Med Child Neurol., 2003; null(7):470–6.

21.

Klassen

, Gulati

, Granek

, et al. Understanding the health impact of caregiving: a qualitative study of immigrant parents and single parents of children with cancer. Qual Life Res., 2012; 21(9):1595–605.

22.

Rosenberg-Yunger

ZRS

, Granek

, Sung

, et al. Single-parent caregivers of children with cancer: factors assisting with caregiving strains. J Pediatr Oncol Nurs., 2013; 30(1):45–55.

23.

Sharman

, Meert

, Sarnaik

. What influences parents' decisions to limit or withdraw life support. Pediatr Crit Care Med., 2005; 6:513–18.

24.

Nass

, Patlak

. Identifying and addressing the needs of adolescents and young adults with cancer: workshop summary. Washington, DC: The National Academies Press; 2013.

25.

JAYAO. What should the age range be for AYA oncology. J Adolesc Young Adult Oncol., 2011; 1(1):3–10.

26.

Baker

, Leek

, Salas

, et al. Suggestions from adolescents, young adults, and parents for improving informed consent in phase 1 pediatric oncology trials. Cancer., 2013; 119:4154–61.

27.

Chapple

, Salinas

, Ziebland

, et al. Fertility issues: the perceptions and experiences of young men recently diagnosed and treated for cancer. J Adolesc Health., 2007; 40:69–75.

28.

Hinds

, Drew

, Oakes

, et al. End-of-life care preferences of pediatric patients with cancer. J Clin Oncol., 2005; 23:9146–54.

29.

Stinson

, Sung

, Gupta

, et al. Disease self-management needs of adolescents with cancer: perspectives of adolescents with cancer and their parents and healthcare providers. J Cancer Surviv., 2012; 6:278–86.

30.

Zwaanswijk

, Tates

, van Dulmen

, et al. Young patients', parents', and survivors' communication preferences in paediatric oncology: results of online focus groups. BMC Pediatr., 2007; 7:35–44.

31.

Young

, Kim

, Li

, et al. Agency and communication challenges in discussions of informed consent in pediatric cancer research. Qual Health Res., 2010; 20(5):628–43.

32.

Talati

, Lang

, Ross

. Reactions of pediatricians to refusals of medical treatment for minors. J Adolesc Health., 2010; 47:126–32.

33.

Yap

, Yamokoski

, Hizlan

, et al. Informed consent for pediatric phase I cancer trials: physicians' perspectives. Cancer., 2010; 116(3):3244–50.

34.

de Vries

, Wit

, Engberts

, et al. Pediatric oncologists' attitudes towards involving adolescents in decision-making concerning research participation. Pediatr Blood Cancer., 2010; 55:123–8.

35.

Miller

, Baker

, Leek

, et al. Patient involvement in informed consent for pediatric phase I cancer research. J Pediatr Hematol Oncol., 2014; 36(8):635–40.

36.

Seth

. Communication to pediatric cancer patients and their families: a cultural perspective. Indian J Palliat Care., 2010; 16(1):26–9.

37.

Aziz

, Oeffinger

, Brooks

, Turoff

. Comprehensive long-term follow-up programs for pediatric cancer survivors. Cancer., 2006; 107:841–8.

38.

Ben Arush

, Geva

, Ofir

, et al. Prevalence and characteristics of complementary medicine used by pediatric cancer patients in a mixed western and middle-eastern population. J Pediatr Hematol Oncol., 2006; 28:141–6.

39.

O'Connor

, Graham

, O'Meara

, et al. The use of complementary and alternative medicine by Irish pediatric cancer patients. J Pediatr Hematol Oncol., 2013; 35:537–42.

40.

Anderson

, Weddell

, Spoudeas

, et al. Do doctors discuss fertility issues before they treat young patients with cancer. Hum Reprod., 2008; 23(10):2246–51.

41.

Goodwin

, Oosterhuis

, Kiernan

, et al. Attitudes and practices of pediatric oncology providers regarding fertility issues. Pediatr Blood Cancer., 2007; 48:80–5.

42.

Quinn

, Vadaparampil

. Fertility preservation and adolescent/young adult cancer patients: physician communication challenges. J Adolesc Health., 2009; 44:394–400.

43.

Zwaanswijk

, Tates

, van Dulmen

, et al. Communicating with child patients in pediatric oncology consultations: a vignette study on child patients', parents', and survivors' communication preferences. Psychooncology., 2011; 20:269–77.

44.

Engelen

, Detmar

, Koopman

, et al. Reporting health-related quality of life scores to physicians during routine follow-up visits of pediatric oncology patients: is it effective. Pediatr Blood Cancer., 2012; 58:766–74.

45.

Parsons

, Saiki-Craighill

, Mayer

, et al. Telling children and adolescents about their cancer diagnosis: cross-cultural comparisons between pediatric oncologists in the US and Japan. Psychooncology., 2007; 16:60–8.

46.

Clemente

. Clinicians' routine use of non-disclosure: prioritizing “protection” over the information needs of adolescents with cancer. CJNR., 2007; 39(4):18–34.

47.

Ringnér

, Öster

, Björk

, Graneheim

. Talking via the child: discursively created interaction between parents and health care professionals in a pediatric oncology ward. J Fam Nurs., 2013; 19(1):29–52.

48.

Hedström

, Kreuger

, Ljungman

, et al. Accuracy of assessment of distress, anxiety, and depression by physicians and nurses in adolescents recently diagnosed with cancer. Pediatr Blood Cancer., 2006; 46:773–9.

49.

Bell

, Skiles

, Pradhan

, Champion

. End-of-life experiences in adolescents dying with cancer. Support Care Cancer., 2010; 18:827–35.

50.

Epstein

, Franks

, Fiscella

et al. Measuring patient-centered communication in patient-physician consultations: theoretical and practical issues. Soc Sci Med., 2005; 61:1516–28.

51.

Street

Jr , Makoul

, Arora

, Epstein

. How does communication heal? Pathways linking clinician–patient communication to health outcomes. Patient Educ Couns., 2009; 74:295–301.

52.

Rolland

. Cancer and the family: an integrative model. Cancer., 2005; 104(Suppl 11):2584–95.

53.

Hardoff

. Legal and ethical issues in adolescents' health care. Georgian Med News., 2012; 9:18–21.

54.

Michaud

, Berg-Kelly

, Macfarlane

, et al. Addressing ethical dilemmas in the clinical care of adolescents: an international view. Adolesc Med., 2009; 20:949–60.

55.

Arabiat

, Alqaissi

, Hamdan-Mansour

. Children's knowledge of cancer diagnosis and treatment: Jordanian mothers' perceptions and satisfaction with the process. Int Nurs Rev., 2011; 58:443–9.

56.

Gonçalves

, Castro

. Diagnosis disclosure in a Portuguese oncological centre. Palliat Med., 2001; 15:35–41.

57.

Gongal

, Vaidya

, Jha

, et al. Informing patients about cancer in Nepal: what do people prefer. Palliat Med., 2006; 20:471–6.

58.

, Liu

, Zou

, et al. To tell or not to tell: attitudes of Chinese oncology nurses towards truth telling of cancer diagnosis. J Clin Nurs., 2008; 17:2463–70.

59.

Mystakidou

, Tsilika

, Parpa

, et al. Patterns and barriers in information disclosure between health care professionals and relatives with cancer patients in Greek society. Eur J Cancer Care., 2005; 14:175–81.

60.

Surbone

, Ritossa

, Spagnolo

. Evolution of truth-telling attitudes and practices in Italy. Crit Rev Oncol Hematol., 2004; 52:165–72.