Using a Heuristic App to Improve Symptom Self-Management in Adolescents and Young Adults with Cancer

Abstract

Purpose:

Adolescents and young adults (AYAs) with cancer need self-management strategies to cope with multiple symptoms. Self-efficacy, self-regulation, and negotiated collaboration are key theoretical components of the self-management process and have not been fully explored with AYAs with cancer. This study examined the effects of a heuristic symptom assessment tool on AYAs' self-efficacy for symptom management, AYAs' self-regulation abilities related to their symptoms, and communication with their providers about symptoms.

Methods:

AYAs (15–29 years of age) receiving chemotherapy used the Computerized Symptom Capture Assessment Tool (C-SCAT) to illustrate their symptom experience and discuss their symptoms with providers during two clinic visits. Participants completed the PROMIS Self-efficacy for Managing Symptoms Scale, a measure of satisfaction with provider communication, and a short interview about self-regulation and communication behaviors at baseline and after each provider visit.

Results:

Eighty-five AYAs who used the C-SCAT showed improved self-efficacy for managing symptoms. Qualitative data suggest that the C-SCAT was useful for enhancing a number of AYAs' self-regulation abilities related to symptom management, such as awareness and recall of symptoms, how symptoms were related, and how they planned to talk about their symptoms to providers. AYAs reported C-SCAT facilitated communication with providers about symptoms and symptom management because it was a visual prompt showing priority and related symptoms.

Conclusions:

Because AYAs continue to experience multiple distressing symptoms, symptom self-management remains an important area for practice and research. Use of heuristic tools, such as the C-SCAT, may help AYAs more effectively self-manage their symptoms for better health outcomes.

Introduction

Improving self-management behaviors of adolescents and young adults (AYAs) with cancer is necessary to optimize their short- and long-term health outcomes. Self-management is an iterative process by which individuals integrate strategies that allow them to cope with illness in their daily lives.¹ Self-management tasks for individuals with cancer include managing medical, physical, and psychosocial aspects of the disease across the cancer continuum.² For AYAs, the tasks of self-management related to cancer can be particularly challenging as they transition from navigating the healthcare system with their parents to navigating it on their own.³ In addition, the complexity and variability of AYAs' cancer symptom experiences at this dynamic stage of life further add to the challenges of self-management.

Several frameworks have been developed to advance the science of self-management in individuals with chronic illness, including cancer.^4,5 Although the frameworks vary in specific components, most view self-management as a process with outcomes related to health behaviors, health status, and costs. While individual, family, and environmental factors influence the process, mechanisms that drive desired self-management behaviors include self-efficacy (confidence to carry out a behavior), self-regulation (activities related to self-monitoring, goal-setting, and decision-making), motivation, and/or patient activation (being engaged in managing one's health).^4,6

Few studies have explored the self-management process in AYAs with cancer. A systematic review examined self-efficacy for disease management in AYA cancer survivors and concluded that higher self-efficacy was associated with greater social support, AYAs' ability to talk about cancer, and positive health beliefs. Higher self-efficacy in AYAs predicted positive health behaviors and engagement in treatment, while lower self-efficacy was associated with a poorer health status.⁷ Linder et al. identified multiple self-management strategies used by AYAs to manage chemotherapy-related symptoms, including medication management, sleep and rest, physical activity strategies, eating strategies, and psychosocial/relational strategies.⁸ In a study of facilitators and barriers to self-management following stem cell transplant, social support and communication with the healthcare team were identified as facilitators to improve AYAs' self-management behaviors.⁹ “Connectedness” with providers and a strong patient-provider alliance have been associated with AYAs' treatment adherence and psychosocial adjustments.^10–13

This study was guided by the Individual and Family Self-Management Theory (IFSMT), which includes three dimensions: context, process, and outcomes (Fig. 1).^14–17 The contextual dimension consists of characteristics specific to the individual, family, and environment, which can be risk or protective factors that influence self-management. The process dimension refers to knowledge, beliefs, self-efficacy, self-regulation skills and abilities, and social facilitation (e.g., social influences, support, and negotiated collaboration). Proximal and distal outcomes include self-management behaviors, cost, quality of life, and health status. A key assumption of the IFSMT is that the primary responsibility for self-management lies with the individual and family.⁵

FIG. 1.

The Individual and Family Self-Management Theory. Used with permission from Ryan and Sawin, 2014.¹⁷

This study sought to generate evidence about constructs integral to the process of self-management in AYAs related to cancer symptom management. The purpose of the study was to examine the effects of a heuristic symptom assessment tool, the Computerized Symptom Capture Assessment Tool (C-SCAT), on AYAs' self-efficacy for symptom management, their self-regulation abilities related to symptoms, and negotiated collaboration, as operationalized by AYAs' perceptions of communication with their providers about symptoms.

Methods

Study design

The study used a single-group longitudinal mixed methods design with data collection at the time of enrollment (baseline) followed by the use of C-SCAT and data collection during each of two post-baseline visits (visit 1 and 2) associated with chemotherapy administration. The time interval between most visits ranged from 1 to 4 weeks.

Setting and sample

Eligible participants were AYAs 15–29 years of age receiving myelosuppressive chemotherapy for any diagnosis of cancer at five academic medical centers in the USA. Narrower than that proposed by NCI, this age range captures adolescents and “emerging adults” who are more homogeneous in qualities of character.^18,19 All sites treated AYAs with cancer and represented the Southwest, Intermountain West, Midwest, and Southeast. Inclusion criteria were as follows: (1) completion of at least 1 month of chemotherapy with at least two additional treatments anticipated, (2) physical and cognitive capacity to complete study procedures, and (3) ability to speak and read English.

Procedures

Following institutional review board approvals, the research team at each site screened for eligible patients. Written parental permission followed by written patient assent was obtained for those 15–17 years of age, and written informed consent was obtained for AYAs 18 years of age and older. Baseline measures of self-efficacy for symptom management and patient-provider communication were collected at the time of enrollment. At the next two scheduled visits for chemotherapy (visits 1 and 2) and before meeting with their provider, AYAs completed the C-SCAT and received a copy of the graphical image they created to use during the visit to discuss their symptom experience with their provider. Immediately after each provider visit, AYAs completed measures of self-efficacy and patient-provider communication and a brief in-person interview. All participants received a gift card at the completion of each provider visit. Intervention fidelity across sites was addressed by establishing standard operating procedures (SOP), training research team members to the SOP, and holding regular meetings to discuss any deviations across study sites.

Instruments

Participants self-reported their age, gender, race/ethnicity, and family/household structure. The medical record was reviewed for details about their cancer diagnosis, treatment protocol, and any co-morbid conditions.

(1) The Computerized Symptom Capture Tool (C-SCAT) is an investigator-developed application based on symptom cluster heuristics delivered using an iPad.²⁰ The C-SCAT guides the user to create a graphical image of his/her symptom experience. AYAs identify symptoms experienced during the past 24 hours from a menu, and then identify temporal and causal relationships between symptoms and groups of symptoms that occur together (symptom clusters). Finally, they name their symptom clusters and identify priority symptoms and a priority symptom cluster. Data generated from the C-SCAT are encrypted and transmitted to an HIPAA-compliant, password-protected Amazon Simple Storage Service account. The final image can be downloaded for review with a healthcare provider. The C-SCAT demonstrated initial feasibility and acceptability in AYAs with cancer.²¹

(2) The PROMIS Self Efficacy for Managing Symptoms Scale (PROMIS S-E) is a 28-item scale for use with individuals with chronic conditions. Items assess the person's level of confidence to manage symptoms, including managing symptoms in different settings and keeping symptoms from interfering with daily activities.²² Response options on a 5-point Likert scale range from “I am not confident at all” to “I am very confident.” Scores are summed across items, and higher scores indicate greater self-efficacy. Although the scale was validated in adults, the items are relevant for adolescents 15 years of age and older.²³ The Cronbach's alpha for the scale at baseline was 0.94.

(3) The Patient-Provider Communication Scale (PPCS) includes four investigator-developed items addressing the AYAs' perceptions of the quality of patient-provider communication about his/her symptom experience. Items address providers' openness, sensitivity, and care. Responses are measured on a 5-point Likert scale and range from “not at all” to “very much.” These items were derived from research addressing “connectedness” between AYAs with cancer and their providers.¹⁰ The Cronbach's alpha for the new scale at baseline was 0.78.

(4) During a semistructured interview, AYAs responded to three questions that assessed how using the C-SCAT impacted self-regulation behaviors, such as self-monitoring, reflective thinking, and decision-making, as well as communication with providers.^14,24–26 Questions addressed how using the C-SCAT helped the AYA (1) make sense of his/her symptoms; (2) manage his/her symptoms; and (3) discuss his/her symptoms with providers.

Data analysis

Descriptive statistics were computed for the demographic and cancer-specific variables. The PROMIS S-E and PPCS were scored, and a mean imputation was used for missing data. Less than 5% of participant responses were missing 1 or more items. All data were examined graphically to determine distributional properties. The C-SCAT images and associated text files were reviewed to summarize symptoms and priority symptoms reported by the AYAs.

Mixed-effects models examined the effects of the C-SCAT on perceived self-efficacy (PROMIS S-E) and PPCS over time. Using a backward elimination model-building approach, a mixed-effects linear model was fit to determine the best subset of predictors for the PROMIS S-E and PPCS, beginning with a base model that represented the design of data collection. Fixed effects included site, visit (baseline, visit 1 and visit 2), and site by visit interaction, and a random effect for study participant. Next, potential cofactors of interest (age, gender, and months since diagnosis) were added to the base model, and cofactors with a p-value >0.2 were then sequentially eliminated from the model. All models were checked for multicollinearity. Due to the pilot nature of the study, no adjustment for multiplicity was used, with the type 1 error set at 0.05.

Data from the interviews were analyzed using qualitative content analysis procedures to identify categories related to self-regulation abilities and patient-provider communication.²⁷ Audio files were transcribed and organized by question and by visit. Participants' answers were subdivided to reflect separate meanings. Two researchers worked together to create categories and subcategories of recurring meanings that reflected how the C-SCAT affected the AYAs' self-regulation of symptoms and communication with providers. The research team addressed discrepancies and confirmed the final analysis.

Results

Eighty-eight AYAs enrolled in the study and completed baseline data, and 85 AYAs had post-baseline data (visit 1 or visit 2 or both). Two AYAs withdrew after completing baseline data, and another did not report symptoms at either visit 1 or 2. Eighty-one completed surveys at visit 1 and 79 at visit 2. The majority of AYAs were male (54%) and white (72%). The mean age was 20.9 years (SD = 4.92). Table 1 lists participant characteristics by site.

Table 1.

Sample Characteristics (N = 85)

	PCH (n = 15)	CHLA (n = 11)	CMH (n = 15)	FH (n = 29)	VCUHS (n = 15)	All sites (N = 85)
Characteristic	Mean (SD)	Mean (SD)	Mean (SD)	Mean (SD)	Mean (SD)	Mean (SD)
Age (15–29 yrs)	16.8 (1.32)	17.4 (1.57)	16.5 (0.99)	26.1 (2.45)	22.0 (4.91)	20.9 (4.92)
Months since diagnosis (2–47 months)	13.3 (14.13)	6.8 (9.43)	9.2 (10.73)	15.2 (15.36)	9.7 (11.38)	11.8 (13.15)
	n (%)	n (%)	n (%)	n (%)	n (%)	n (%)
Gender
Female	2 (13)	3 (27)	6 (40)	22 (76)	6 (40)	39 (46)
Male	13 (87)	8 (73)	9 (60)	7 (24)	9 (60)	46 (54)
Race
African American	0 (0)	2 (18)	1 (7)	4 (14)	3 (20)	10 (12)
Asian	0 (0)	0 (0)	0 (0)	1 (3)	0 (0)	1 (1)
Native American/Alaska Native	1 (7)	0 (0)	0 (0)	1 (3)	0 (0)	2 (2)
White	11 (73)	7 (64)	12 (80)	20 (69)	11 (73)	61 (72)
Other or more than one race	3 (20)	2 (18)	2 (3)	3 (10)	1 (7)	11 (13)
Ethnicity
Hispanic/Latino	4 (27)	8 (73)	2 (13)	3 (10)	1 (7)	18 (21)
Non-Hispanic/Latino	11 (73)	3 (27)	13 (87)	26 (90)	14 (93)	67 (79)
Marital status
Never married	14 (93)	11 (100)	15 (100)	15 (52)	10 (67)	65 (76)
Married	0 (0)	0 (0)	0 (0)	7 (24)	3 (20)	10 (12)
Partnered	1 (7)	0 (0)	0 (0)	5 (17)	2 (13)	8 (9)
Divorced	0 (0)	0 (0)	0 (0)	2 (7)	0 (0)	2 (2)
Cancer diagnosis
ALL	9 (60)	4 (36)	5 (33)	3 (10)	6 (40)	27 (32)
APL	1 (7)	0 (0)	0 (0)	1 (4)	2 (13)	4 (5)
AML	1 (7)	0 (0)	0 (0)	1 (4)	1 (7)	3 (3)
Brain tumor	1 (7)	0 (0)	1 (7)	5 (17)	0 (0)	7 (8)
Breast cancer	0 (0)	0 (0)	0 (0)	7 (24)	0 (0)	7 (8)
CML	1 (7)	0 (0)	1 (7)	1 (4)	0 (0)	3 (3)
Hodgkin lymphoma	0 (0)	4 (36)	2 (13)	4 (13)	3 (20)	13 (15)
Non-Hodgkin lymphoma	1 (7)	0 (0)	2 (13)	3 (10)	1 (7)	7 (8)
Sarcoma	1 (7)	3 (27)	3 (20)	3 (10)	0 (0)	10 (12)
Other	0 (0)	0 (0)	1 (7)	1 (4)	2 (13)	4 (5)
Cancer Status
Primary	14 (93)	9 (82)	15 (100)	28 (97)	15 (100)	81 (95)
Relapse	1 (7)	1 (9)	0 (0)	1 (3)	0 (0)	3 (4)
Secondary	0 (0)	1 (9)	0 (0)	0 (0)	0 (0)	1 (1)

PCH, Primary Children's Hospital, Salt Lake City, UT; CHLA, Children's Hospital of Los Angeles, Los Angeles, CA; Children's Mercy Hospital, Kansas City, KA; FH, Froedtert Hospital, Milwaukee, WI; VCUHS, Virginia Commonwealth University Health System, Richmond, VA; CML, chronic myeloid leukemia; ALL, acute lymphoblastic leukemia; APL, acute promyclocytic leukemia; AML, acute myelogenous leukemia.

Eighty-five participants reported symptoms using the C-SCAT. Eighty-three participants reported a mean of 5.6 symptoms at visit 1 (median = 5; range 1–15). Seventy-nine participants reported a mean of 4.8 symptoms at visit 2 (median = 4; range 1–18). All 32 symptoms included on the C-SCAT menu were reported at least once. Table 2 reports the five most frequent symptoms at each visit.

Table 2.

Symptoms Reported by Adolescents and Young Adults by Visit

Visit 1 (n = 83)		Visit 2 (n = 79)
Symptom	n (%)	Symptom	n (%)
Lack of energy	37 (45)	Lack of energy	33 (42)
Nausea	32 (39)	Pain	28 (37)
Hair loss	28 (34)	Difficulty sleeping	26 (33)
Feeling drowsy	27 (33)	Feeling drowsy	26 (33)
Difficulty sleeping	26 (31)	Hair loss	20 (25)

Interview responses were available from 83 participants. Qualitative data analysis identified seven categories related to the CSCAT's impact on AYAs' self-regulation behaviors and one category about communication with providers. Multiple subcategories were further identified under each category.

Self-efficacy for symptom management

Using a mixed linear model, none of the potential covariates (age, gender, and months since diagnosis) contributed to the model for self-efficacy; thus, the final model included effects for site, visit, and site by visit interaction with a random effect for participants. The final model identified a statistically significant effect for visit, showing that self-efficacy improved significantly over time (p = 0.034) (Tables 3 and 4).

Table 3.

Least Square Means and Standard Errors for Outcomes

	Baseline		Visit 1		Visit 2
Variable	Mean	SE	Mean	SE	Mean	SE
PROMIS S-E	102.2	2.12	103.5	2.15	107.0	2.18
PPCS	3.62	0.056	3.63	0.056	3.70	0.058

PROMIS S-E, 28-item Patient-Reported Outcomes Information System (PROMIS) Self-Efficacy Scale (range, 28–140; higher scores indicate greater self-efficacy); PPCS, four-item Patient-Provider Communication Scale (range 0–4; higher scores indicate better communication)

Table 4.

Fixed-Effects Report for Outcomes

	ndf	ddf	F	p value
PROMIS S-E
Main effects
Site	4	76.69	1.35	0.258
Visit	2	150.20	3.46	0.034^*
Interaction effects
Site × Visit	8	150.10	1.13	0.349
PPCS
Main effects
Site	4	81.51	1.46	0.224
Visit	2	151.70	1.00	0.369
Interaction effects
Site × Visit	8	151.60	0.73	0.664

p < 0.05

Patient-provider communication

Similar to the model for PROMIS S-E, none of the potential covariates contributed to the model, and the final model included site, visit, site by visit interaction, and a random effect for participants. The mixed linear model for the PPCS did not find any significant effect (Tables 3 and 4).

In the qualitative data under the category of communication with providers, eight subcategories reflected multiple ways the C-SCAT facilitated AYAs' discussions about symptoms with providers. (Table 5) AYAs commented that because the C-SCAT was a visual tool with standard language, talking about their symptoms was easier and faster, including their priority symptoms and symptoms that were embarrassing or sensitive. Participants indicated that the C-SCAT helped them explain their personal symptom experiences and facilitated conversations with providers about how to manage symptoms.

Table 5.

Subcategories Related to Communication with Provider

Category: Communication with provider—Facilitates communication with provider about the symptom experience
Subcategory	Exemplar quote	Subject ID^: participant*
Clarity/ease	“It makes it easier because then you both have an idea of what's going on. You don't have to go around the whole 20 questions to get one answer.”	1: 26-year-old female with sarcoma
	“It helps me like explain them better. And that way, so yeah. I don't know. I guess I just don't get nervous.”	2: 18-year-old male with ALL
Visual tool	“…helped because it was like a visual - it helped me explain better to her.”	3: 16-year-old female with sarcoma
	“It makes it easier to talk to them because they have it all in front of them and then they can go category to category”	4: 27-year-old female with HL
	“It was nice to have it in a visual rather than thinking off the top of my head.”	1: 26-year-old female with sarcoma
About sensitive or embarrassing symptoms	“Sometimes some of them you don't really want to talk to your doctor about for personal reasons or whatever.”	5: 29-year-old female with CML
	“And sometimes talk about diarrhea and nausea. Not an easy conversation. And it kind of put it out there right away so it wasn't embarrassing.”	6: 26-year-old female with breast cancer
Standard language	“It was easier to have the words right there, than for me to have to explain it myself. In case like I don't know a certain word meant.”	7: 19-year-old male with ALL
	“…makes it easier to find the words that I'm looking for instead of sitting here going uh how do I explain this to her?”	8: 19-year-old male with ALL
Personal experience	“…and extrapolate what my personal experiences and symptoms are, is helpful.”	9: 29-year-old female with breast cancer
	“It helped me be better able to explain my situation and my symptoms.”	10: 16-year-old male with ALL
	“It made me make sense of my symptoms by talking with my provider about every single one.”	11: 25-year-old female with breast cancer
Priority symptoms	“Everything is laid out and just put forward, so you can get right talking about what is the biggest problem.”	1: 26-year-old female with sarcoma
	“It helped explain to her, I could point to it and show a severe symptom and say, I want to have this resolved.”	12:16-year-old male with ALL
About management	“It opened up the conversation with my physician, and I was able to get medication for some of the symptoms.”	13: 16-year-old male with ALL
	“I am glad that she is aware of what's happening to me, and then she can look into how she can help me with the problem.”	14: 16-year-old male with sarcoma
	“Basically it helped be a visual for me and my doctor to help talk about it because right there open on the table and we discussed it and came up with a plan.”	15: 27-year-old male with HL
	“It kind of forced me to be honest if I wanted to have a resolution of my problem I needed to make sure I said everything.”	16: 21-year-old female with HL
About management of related symptoms	“She's always willing to decrease medications or add medications or whatever if there are ways that we can stop one symptom leading to another symptom, so it did help.”	17: 29-year-old female with CUP
	“Show how the doctor can handle them. I think seeing the bigger picture and thinking - Hey there is one cause. What's the one thing we need to do?”	18: 27-year-old female with breast cancer

Subject IDs have been recoded to ensure confidentiality.

CUP, carcinoma of unknown primary; HL, Hodgkin lymphoma.

Self-regulation abilities

Analysis of qualitative interview data into categories revealed several distinct abilities related to AYAs' self-regulation of their symptoms. (Table 6). AYAs reported that the C-SCAT helped them identify and recall their symptoms, especially if memory loss was a problem, and AYAs found that the C-SCAT helped to organize their symptoms and realize how symptoms were related. Using the C-SCAT promoted reflective thinking about the severity and timing of symptoms as well as the causes and effects of symptoms and how to manage them, especially related symptoms. Finally, the C-SCAT helped AYAs prepare for what they wanted to communicate about their symptoms to providers.

Table 6.

Categories and Subcategories Related to Self-Regulation Abilities

Category
Subcategory	Exemplar quote	Subject ID^: participant*
Symptom Identification—Promotes awareness and/or clarity of thinking about symptoms
Awareness	“I think it helps me kind of like realize better what symptoms I have.”	19: 17-year-old female with AML
	“It helps me to be more aware of my symptoms because I start to pay attention more to it. And, yeah–I was just more aware.”	20: 17-year-old female with HL
	“It kind of made me think more about what symptoms are happening and why I'm having them”	21: 15-year-old male with APML
	“It made me realize that I didn't have as many symptoms as I thought that I would have.”	22: 26-year-old female with NHL
Visual tool	“It's a little easier when you just have like a visual tool rather than just have them running around in your head.”	23: 23-year-old male with testicular cancer
	“It was nice to have a visual. I am a visual person.”	24: 29-year-old female with ALL
Efficiency/clarity	“I think it just opens up, you know, quick to jump right to it - you don't have to try to remember what it was.”	25: 27-year-old male with AML
	“I have a clear picture of what's going on.”	15: 27-year-old male with HL
Symptom Recall—Facilitates recall of symptoms in general and/or when memory loss is present
General recall	“Because it makes it so you don't forget anything.”	26: 16-year-old female with HL
	“Reminded me to think about other symptoms that really bother me.”	9: 29-year-old female with breast cancer
Visual tool	“Well, maybe if you couldn't remember what was wrong, it would be right there or something that you forgot. I only come once a month so sometimes it helps to remind me what is going on.”	27: 18-year-old male with ALL
	“It allowed me to view more symptoms than I would have probably naturally thought of to make sure I wasn't missing an important symptom.”	6: 26-year-old female with breast cancer
Helped when memory loss is a problem	“One of mine was memory loss, or trouble concentrating, and I would forget to bring it up so it was good to mention that because you came up with how to talk to your doctor.”	18: 27-year-old female with breast cancer
	“Well, I don't have the best memory, so it was just really good to be able to look at it.”	18: 27-year-old female with breast cancer
Symptom Organization—Promotes understanding of how symptoms are ordered, related, and/or connected to each other, and/or occur together
Order	“It helped to know what order my symptoms came in.”	28: 17-year-old male with ALL
	“It helps me to get them all in order…”	29: 29-year-old male with APML
Related/connected	“Helped me to realize that they are connected.”	30: 16-year-old female with HL
	“It helped me make sense because they were all laid out in front me and I can see how each of the symptoms connected with each other.”	7: 19-year-old male with ALL
Groups	“I liked the way it helped me group up the symptoms, like what you think are related.”	10: 16-year-old male with ALL
	“To be able to group them… helps me you know think about…how they are grouped together.”	31: 25-year-old female with APML
	“Doing the group thing really helped because I was able to put them in groups and otherwise I would probably be scatterbrained and just have them all over.”	32: 15-year-old female with sarcoma
Reflective Thinking—Promotes deeper understanding about symptoms, including severity, timing, priority, and total experience
Reflection	“Obligates you to think about how symptoms affect you 24 hours a day. Yeah it really just makes you have to think about it a lot.”	33: 19-year-old male with AML
	“It made me really kind of pinpoint what was going on and think through it better.”	17: 29-year-old female with CUP
Priority symptoms	“I liked noting which ones were a priority in the groups because it was nice to be able to say this is the worst of it.”	24: 29-year-old female with ALL
	“I also had to prioritize what I was concerned about the most.”	34: 21-year-old male with NHL
Severity	“…and how much it really is bothering me and how severe, instead of just knowing I have it and not really thinking it.”	24: 29-year-old female with ALL
	“It actually helps to prioritize which ones are more important or more severe to me.”	23: 23-year-old male with testicular cancer
Totality	“…to help me understand my symptoms even better myself and asking myself the questions of when I felt them, what caused each symptom, what other symptoms, so it just gives me a whole understanding of exactly what's happening to my own body.”	33: 19-year-old male with HL
	“C-SCAT basically helped me see the bigger picture.”	15: 27-year-old male with HL
Symptom cause and effect—Stimulates thinking about causes and effects of symptoms, including how symptoms affect each other
Caused by chemotherapy	“It helped realize that all the symptoms I am experiencing are normal according to the chemotherapy I'm getting…”	30: 16-year-old female with HL
	“It helped to differentiate the symptoms that I have at the beginning with the symptoms I have from different chemo now.”	13: 16-year-old male with ALL
Related symptoms	“It all stems from nausea I think, so as long as I keep that under control, everything should be fine.”	35: 19-year-old male with ALL
	“Um, I think it gave me a slightly better understanding of how…one thing can cause a lot of other things.”	36: 19-year-old male with sarcoma
How symptoms affect me	“It helped me to sort out my symptoms and really think about how they each impact my life.”	17: 29-year-old female with CUP
	“…how they affect me and my daily life.”	14: 16-year-old male with sarcoma
Symptom Management—Stimulates thinking about how to manage and/or prevent symptoms
Self-management	“I look and like now I have more ideas of controlling my symptoms.”	14: 16-year-old male with sarcoma
	“It will help me be more aware of and manage them through just taking better care of my symptoms.”	37: 26-year-old female with NHL
Related symptoms	“If I have one of the symptoms that means I should not have the other one, so if I resolve one I could resolve the other because they are all together.”	38: 15-year-old male with ALL
	“By knowing what causes what I'm able to try to help prevent the first symptom that causes everything else. So if I can stop that then hopefully I can stop the rest.”	31: 25-year-old female with APML
Pharmacologic	“So, I can just take the medicines to help me manage it.”	7: 19-year-old male with ALL
	“A lot of anxiety or worrying that I actually now got a prescription for medication to help manage that.”	39: 28-year-old female with breast cancer
Planning for communication with provider—facilitates preparation for provider visit
Preparation for visit	“It just got me thinking about like, what has been and hasn't been affecting me. Whereas I kind of came in without thinking about it before.”	10: 16-year-old male with ALL
	“I think it was good because it made me kinda pre-prepare—kinda run down what I am going through…the past 24 hours.”	40: 25-year-old male with sarcoma
Recall	“…it reminds me to ask about these things or talk about these things.”	24: 29-year-old female with ALL
	“Because it makes it so you don't forget anything.”	40: 17-year-old female with CML

Subject IDs have been recoded to ensure confidentiality.

APML, acute promyelocytic leukemia; NHL, non-Hodgkin lymphoma.

Discussion

This study explored how the C-SCAT, a heuristic symptom assessment tool, affected the process of symptom self-management among AYAs receiving chemotherapy. According to the IFSMT, AYAs will be more likely to engage in effective symptom self-management behaviors if they have knowledge and beliefs that improve their self-efficacy to manage symptoms, if they develop self-regulation abilities around their symptoms, and if they benefit from effective communication about symptom management with their providers.

Data were collected at a visit when chemotherapy was due, a time when AYAs might be expected to have fewer symptoms. AYAs in this study, however, commonly reported up to five symptoms, with some reporting 15 symptoms or more, indicating high symptom burden. The most common symptoms were those previously known to be prevalent and persistent, such as fatigue, nausea, and sleep-wake disturbances.²⁸ A focus on AYAs' symptom self-management strategies, therefore, remains an important area for practice and research.

AYAs who used the C-SCAT showed improved self-efficacy for managing symptoms from baseline across two visits. Self-efficacy, first introduced by Bandura in 1977, refers to the confidence a person has in their abilities to successfully engage in a behavior and is critical in self-management.⁴ Self-efficacy can be measured in general, as in chronic disease management, or in relation to a specific behavior, such as symptom management. Using the PROMIS S-E tool, this study showed opportunity to improve AYAs' self-efficacy to manage symptoms. As with AYA cancer survivors⁷ and adults with cancer,²⁹ improved self-efficacy may translate into improved symptom outcomes, which were not examined in this study, but are important variables for future symptom self-management studies.

Qualitative data suggested that the C-SCAT was useful for enhancing multiple self-regulation abilities related to symptom management, starting with awareness, identification, and recall. The C-SCAT facilitated AYAs' understanding of how their symptoms were related to each other and how symptoms affected each other. The C-SCAT promoted a greater understanding of their personal symptom experience and their priority symptoms, as well as the totality of their symptom experience. Finally, the C-SCAT stimulated thoughts about how AYAs could communicate with their providers and improve their own self-management of symptoms. These basic cognitive processes and reflective thinking about symptoms are foundational to self-regulation.¹⁴ Enhancing these abilities may be especially important for AYAs as they may not have had prior experience with identifying, describing, and monitoring ongoing symptoms related to illness.

The PPCS did not show significant improvement in AYAs feeling connected with their providers regarding discussions about symptoms. Scale items may not have accurately captured the impact of the C-SCAT on these discussions. In addition, PPCS scores were high at baseline and may have been less sensitive to change. Interview responses, however, revealed how the C-SCAT facilitated AYAs' communication with their providers about their symptoms. AYAs found the C-SCAT, as a visual tool with standard language, was helpful to explain their symptoms to providers, including their priority symptoms and sensitive and embarrassing symptoms. AYAs have acknowledged challenges related to talking with providers, especially about mental health symptoms and sensitive topics, such as sexual function.^30,31 Resources such as the C-SCAT may help AYAs overcome communication barriers with providers and promote the experience of “being known” by the healthcare team as a unique individual, which is highly valued by AYAs with cancer and helps them feel “connected” to their providers.^31,32

Communication between AYAs and their providers about symptoms may lead to the mutual development of symptom management plans through negotiated collaboration. Negotiated collaboration is a process that includes open communication, mutual respect and trust, mutual goals, and shared power and decision-making.^33–35 According to the IFSMT, “…negotiated collaboration occurs when “your, mine, and our” perspectives are respected and influential.”^{14, p. 225.e5} Comments from AYAs in the study, such as, “We discussed it and came up with a plan.” and “…ways that we can stop one symptom leading to another symptom…,” are examples of negotiated collaboration between the AYA and provider. Collaborative treatment decision-making is recommended by the National Comprehensive Cancer Network (NCCN) as a strategy to promote adherence in AYAs with cancer.³⁶

Limitations of this study include the single-group, nonrandomized design as well as a heterogeneous sample of AYAs, some of whom were diagnosed with cancer years earlier. Without a control group, it is not possible to determine whether AYAs' self-efficacy for symptom management and self-regulation improved naturally over time without the use of C-SCAT. How and whether every AYA in the study discussed the C-SCAT image with their provider are not known. As noted above, the PPCS was developed for this study.

Despite these limitations, this study examined how a heuristic symptom assessment tool affected several processes of self-management of symptoms in AYAs with cancer. Because AYAs may be novices in taking responsibility for their healthcare, AYAs may especially benefit from resources to promote their self-efficacy, self-regulation abilities, and communication with providers around symptom management. Electronic resources, such as the C-SCAT, are particularly appealing and feasible with this tech-savvy group of young patients, as demonstrated by AYAs in this study who easily mastered the C-SCAT. AYA providers are encouraged to develop and use age-appropriate symptom assessment tools, interventions, and resources to meet the needs of AYAs across the cancer trajectory.³⁷ A structured and systematic approach by providers to assess and discuss symptoms with AYAs may be helpful.

The C-SCAT demonstrated feasibility and acceptability with AYAs in a previous study.¹⁹ This study indicated that use of C-SCAT may be an intervention to promote symptom self-management by affecting both internal (e.g., self-efficacy) and external (e.g., communication) processes. A larger, randomized controlled trial that includes a comparison group of AYAs who do not use the C-SCAT is needed to detect group differences in the self-management process, and a closer examination of AYAs' communication with providers, while using the C-SCAT, is needed. Future theory-based studies focused on AYAs' self-management behaviors will help to understand the relationships between the components of self-management. Instrument development is needed to accurately measure concepts critical to self-management. Intervention studies to improve symptom self-management must examine both short- and long-term outcomes, with the goals of relieving symptom burden and improving quality of life for AYAs with cancer.

Footnotes

Acknowledgments

The authors acknowledge the following sources of research support: (1)

Advancing a Healthier Wisconsin Foundation

(2)

Clinical and Translational Science Institute of Southeast Wisconsin

(3)

St. Baldrick's Foundation

(4)

University of Utah

(5)

Virginia Commonwealth University School of Nursing

Disclaimer

Some of these data were presented in June 2018 at the annual conference of the Multinational Association of Supportive Care in Cancer (MASCC) in Vienna, Austria.

Author Disclosure Statement

No competing financial interests exist.

References

Miller

, Lasiter

, Ellis

, Buelow

. Chronic disease self-management: a hybrid concept analysis. Nurs Outlook. 2015; 63:154–61.

McCorkle

, Ercolano

, Lazenby

, et al. Self‐management: enabling and empowering patients living with cancer as a chronic illness. CA Cancer J Clin. 2011; 61:50–62.

Davies

, Kelly

, Hannigan

. Autonomy and dependence: a discussion paper on decision making in teenagers and young adults undergoing cancer treatment. J Adv Nurs. 2015; 71:2031–40.

Moore

, Schiffman

, Waldrop‐Valverde

, et al. Recommendations of common data elements to advance the science of self‐management of chronic conditions. J Nurs Scholarsh. 2016; 48:437–47.

Sawin

KJ.

Definitions, frameworks, and theoretical issues in self-management. J Pediatr Rehabil Med. 2017; 10:169–76.

Hibbard

, Mahoney

. Toward a theory of patient and consumer activation. Patient Educ Couns. 2010; 78:377–81.

Herts

, Khaled

, Stanton

. Correlates of self-efficacy for disease management in adolescent/young adult cancer survivors: a systematic review. Health Psychol. 2017; 36; 192–205.

Linder

, Erickson

, Stegenga

, et al. Symptom self-management strategies reported by adolescents and young adults with cancer receiving chemotherapy. Support Care Cancer. 2017; 25:3793–806.

Morrison

, Pai

ALH

, Martsolf

. Facilitators and barriers to self-management for adolescents and young adults following a hematopoetic stem cell transplant. J Pediatr Oncol Nurs. 2018; 35:36–42.

10.

Phillips

, Haase

. A connectedness primer for healthcare providers: adolescent/young adult cancer survivors' perspectives on behaviors that foster connectedness during cancer treatment and the resulting positive outcomes. J Adolesc Young Adult Oncol. 2018; 7:174–80.

11.

Trevino

, Fasciano

, Prigerson

. Patient-oncologist alliance, psychosocial well-being, and treatment adherence among young adults with advanced cancer. J Clin Oncol. 2013; 31:1683–89.

12.

Trevino

, Abbott

, Fisch

, et al. Patient-oncologist alliance as protection against suicidal ideation in young adults with advanced cancer. Cancer. 2014; 120: 2272–81.

13.

McGrady

, Ryan

, Gutiérrez‐Colina

, et al. The impact of effective paediatric adherence promotion interventions: systematic review and meta‐analysis. Child Care Health Dev. 2015; 41:789–802.

14.

Ryan

, Sawin

. The Individual and Family Self-management Theory: background and perspectives on context, process, and outcomes. Nurs Outlook. 2009; 57:217–25.

15.

Ryan

The Integrated Theory of Health Behavior Change: background and intervention development. Clin Nurs Spec. 2009; 23:161–70.

16.

UWM Self-Management Science Center Working Group. Individual and Family Self-Management Theory: Definition of self-management. Accessed December 13, 2015 from: http://uwm.edu/nursing/about/centers-institutes/self-management/theory

17.

Ryan

, Sawin

Individual and Family Self-Management Theory. Accessed December 13, 2015 from: http://uwm.edu/nursing/about/centers-institutes/self-management/theory

18.

National Cancer Institute. Adolescents and Young Adults with Cancer. Accessed September 8, 2018 from: https://www.cancer.gov/types/aya

19.

Arnett

JJ.

Conceptions of the transition to adulthood: perspectives from adolescence through midlife. J Adult Dev. 2001; 8:133–43.

20.

Cray

, Woods

, Mitchell

. Identifying symptom clusters during the menopausal transition: observations from the Seattle Midlife Women's Health Study. Climacteric. 2013; 16:539–49.

21.

Macpherson

, Linder

, Ameringer

, et al. Feasibility and acceptability of an iPad application to explore symptom clusters in adolescents and young adults with cancer. Pediatr Blood Cancer. 2014; 61:1996–2003.

22.

Patient-Reported Outcomes Measurement Information System. Self-Efficacy for Managing Chronic Conditions: A Brief Guide to the PROMIS^® Self-Efficacy Instruments. Accessed October 10, 2015 from: http://www.assessmentcenter.net/documents/PROMIS%20Self%20Efficacy%20Scoring%20Manual.pdf

23.

Gruber-Baldini

, Velozo

, Romero

, Shulman

. Validation of the PROMIS^® measures of self-efficacy for managing chronic conditions. Qual Life Res. 2017; 26:1915–24.

24.

Burman

, Green

, Shanker

. On the meanings of self-regulation: digital humanities in service of conceptual clarity. Child Dev. 2015; 86:1507–21.

25.

Fleury

The Index of Self-Regulation: development and psychometric analysis. J Nurs Meas. 1998; 6:3–17.

26.

Yeom

, Choi

, Belyea

, Fleury

. Psychometric evaluation of the Index of Self-Regulation. Western J Nurs Res. 2011; 33:268–85.

27.

Elo

, Kyngas

. The qualitative content analysis process. J Adv Nurs. 2008; 62:107–15.

28.

Ameringer

, Erickson

, Macpherson

, et al. Symptoms and symptom clusters identified by adolescents and young adults with cancer using a symptom heuristics app. Res Nurs Health. 2015; 38:436–48.

29.

White

, Cohen

, Berger

, et al. Perceived self-efficacy: a concept analysis for symptom management in patients with cancer. Clin J Oncol Nurs. 2017; 21:E272–79.

30.

Wiener

, Weaver

, Bell

, Sansom-Daly

. Threading the cloak: palliative care education for care providers of adolescents and young adults with cancer. Clin Oncol Adolesc Young Adults. 2015; 5:1–18.

31.

Jacobsen

, Bouchard

, Erned

, Lepage

, Cook

. Experiences of “being known” by the healthcare team of young adult patients with cancer. Oncol Nurs Forum. 2015; 42; 250–56.

32.

Phillips-Salimi

, Haase

, Kooken

. Connectedness in the context of patient-provider relationships: a concept analysis. J Adv Nurs. 2012; 68:230–45.

33.

Coburn

Negotiation Conflict Styles. Accessed June 10, 2018 from: https://hms.harvard.edu/sites/default/files/assets/Sites/Ombuds/files/NegotiationConflictStyles.pdf

34.

Specialty Equipment Market Association (SEMA). Understand competitive and collaborative tactics to conduct successful business negotiations. Accessed June 10, 2018 from: https://www.sema.org/sema-enews/2010/48/understand-competitive-and-collaborative-tactics-to-conduct-successful-negotiatio

35.

Walker

GB.

Decision-making, teams, and negotiation. Accessed May 23, 2018 from: http://oregonstate.edu/instruct/comm440–540/decisions.html

36.

Coccia

, Pappo

, Beaupin

, et al. Adolescent and Young Adult Oncology, Version 2.2018, NCCN Clinical Practice Guidelines in Oncology. J Natl Compr Canc Netw. 2018; 16:66–97.

37.

Bibby

, White

, Thompson

, Anazodo

. What are the unmet needs and care experiences of adolescents and young adults with cancer? A systematic review. J Adolesc Young Adult Oncol. 2017; 6:6–30.