Catherine Fiona Macpherson

Symptoms and symptom clusters in adolescents receiving cancer treatment: A review of the literature

OBJECTIVES The purpose of this literature review is to document what is known about the most common symptoms and symptom clusters in adolescents receiving cancer treatment in order to advance the science of symptom management for this unique group of patients. DESIGN This review identified primary research reports focused on cancer-related symptoms in adolescents using methodology that included objective measurement of the symptom(s) or self-report from the adolescents. DATA SOURCES We searched the literature using Medline, PubMed, and CINAHL from 2000 to 2011. REVIEW METHODS The first step of the review was to synthesize evidence to identify the most common symptoms experienced by adolescents during the cancer treatment period. The second step located findings from additional research about these specific symptoms individually or as clusters. RESULTS From 12 reports, we identified 6 common symptoms in adolescents during the treatment period: fatigue, sleep-wake disturbances, nausea/eating problems, pain, mood disturbances, and appearance changes. Findings from 51 studies provided a foundation of evidence about symptom trajectories, contributing factors, and associations between symptoms. CONCLUSIONS This review of the literature identified a relatively small body of research related to symptoms in adolescents during the cancer treatment period. Most of the studies were of low quality evidence and described individual symptoms rather than associations or clusters. A few longitudinal studies described symptoms during a cycle of chemotherapy and across months of chemotherapy treatment. With the exception of nausea, no studies tested any interventions to relieve these common symptoms in adolescents. To ensure that adolescents complete the challenging period of cancer treatment and emerge capable of achieving the developmental milestones of young adulthood, important work remains to be done in this field of symptom management.

Feasibility and acceptability of an iPad application to explore symptom clusters in adolescents and young adults with cancer

The aim of this study was to evaluate the feasibility and acceptability of a computer‐based symptom cluster heuristics tool designed to explore symptom clusters experienced by adolescents and young adults (AYAs) with cancer. The Computerized Symptom Capture Tool (C‐SCAT) is a newly developed iPad application, which combines graphical images and free text responses in an innovative heuristics approach to explore symptoms and symptom clusters.

Understanding how adolescents and young adults with cancer talk about needs in online and face-to-face support groups:

We compared adolescent and young adult cancer patient and survivor language between mediated and face-to-face support communities in order to understand how the use of certain words frame conversations about family, friends, health, work, achievement, and leisure. We analyzed transcripts from an online discussion board (N = 360) and face-to-face support group (N = 569) for adolescent and young adults using Linguistic Inquiry and Word Count, a word-based computerized text analysis software that counts the frequency of words and word stems. There were significant differences between the online and face-to-face support groups in terms of content (e.g. friends, health) and style words (e.g. verb tense, negative emotion, and cognitive process).

Hanging by a thread: exploring the features of nonresponse in an online young adult cancer survivorship support community

PurposeFinding helpful information can be challenging for young adult (YA) cancer survivors; thus, it is critical to examine features of online posts that successfully solicit responses and assess how these differ from posts that do not solicit responses.MethodsUsing posts from an online YA cancer support community, we analyzed initial posts that did and did not receive replies utilizing Linguistic Inquiry Word Count (LIWC).ResultsIndependent t tests revealed significant differences between the sets of posts regarding content, emotions, cognitive processes, pronoun use, and linguistic complexity. More specifically, posts with replies contained fewer words per sentence, had more first-person pronouns, had more expressions of negative emotions, and contained more present tense and past tense verbs.ConclusionsThe findings of this study can help improve peer-exchanged support in online communities so that YA cancer survivors can more effectively receive digital support. This research also provides communication researchers, health educators, and care providers a lens for understanding the YA cancer survivorship experience.Implications for Cancer SurvivorsThis research helps survivors be strategic in how they use online forums to seek advice and support. More complete understanding of what kinds of prompts produce responses allows those in need to craft messages in ways that are most likely to elicit support from fellow cancer survivors. These implications for message design extend beyond blogging and can be applicable for text message and email exchanges between cancer patients and their care providers.

I'm a survivor, go study that word and you'll see my name: adolescent and cancer identity work over the first year after diagnosis.

Background: The diagnosis of cancer in adolescence is a significant challenge, particularly because of the developmental expectations of this life-stage, regarding autonomy and identity formation. Adolescents must assimilate cancer into their normative identity work. Objective: The objective was to explore and describe themes common to adolescents with cancer. Methods: A longitudinal qualitative descriptive design was used. Participants were interviewed up to 4 times during the first year after diagnosis, and inductive content analysis was used. Results: Fifteen adolescents participated. The most salient themes over time related to the development of adolescent identity, cancer identity, and integration of the two into an adolescent with cancer identity. Conclusions: This research demonstrates the active role that adolescents with cancer take in constructing their identities both around their cancer and separate of it. Further research is needed to more fully delineate this process, but this research provides a framework for next steps. Implications for Practice: Understanding this process allows practitioners to provide anticipatory guidance for adolescents experiencing cancer, understanding their need for peer support (peers with cancer and without) as well as the need to normalize the cancer experience to the greatest extent possible.

Defining adolescent and young adult (AYA) exercise and nutrition needs: Concerns communicated in an online cancer support community

OBJECTIVE To describe topics, needs, and concerns related to nutrition and exercise that adolescents and young adults affected by a serious illness (cancer) discuss online. METHODS Investigators conducted a qualitative content analysis of messages related to nutrition and exercise posted on an online young adult cancer forum. RESULTS AYAs described several functions achieved through nutrition and exercise, such as fighting cancer, losing weight, obtaining nutrients despite side effects of treatment, promoting general health, enjoyment, and promoting mental/emotional health. AYAs also discussed several problems that interfere with nutrition and exercise goals, such as side effects of steroids, physiological problems with eating, safety concerns or physical limitations due to treatment, poor follow through with behavioral change, stress, and low energy. CONCLUSION AYAs discuss specific ways nutrition and exercise help achieve a variety of functions that may be physical or psychological, cancer-specific or general. AYAs describe several concerns and barriers that impede their nutrition and exercise goals. PRACTICE IMPLICATIONS Clinicians should also consider relevant medical and personal variables that partly determine nutrition and exercise concerns. Clinicians can anticipate barriers to desired nutrition/exercise change and develop interventions that address these barriers in appropriately tailored ways, including using digital media.

The cost of cancer: a retrospective analysis of the financial impact of cancer on young adults

Young adult cancer survivors (YAs) are confronted with immense financial challenges in the wake of their treatment. Medical bills and loss of savings may cause YAs to forgo recommended medications or follow‐up appointments. Young survivors with financial concerns also report depression, stress and anxiety. The Samfund is a national nonprofit organization that provides financial support to YAs post‐treatment. To quantify the financial burden of cancer in YAs, a retrospective analysis was performed of data collected from Samfund grant applications of 334 YA cancer survivors. Grants were awarded between 2007 and 2013 and grant recipients were consented electronically in 2014 for retrospective data analysis. Recipients ranged from 19 to 39 years of age at the time of their grant applications. Descriptive statistics were calculated and compared to the Medical Expenditure Panel Survey (MEPS) and U.S. census data on age‐matched peers. Financial indicators of YA cancer survivors are worse in many domains than those of age‐matched controls. Furthermore, YA survivors in their 30s report more perilous prefunding financial situations than younger grant recipients. Cancer has a devastating and age‐specific impact on the finances of YAs. Philanthropic grants from the cancer support community, in conjunction with healthcare policy reforms, have the potential to break the cycle of financial need and help YAs move forward with their lives after cancer treatment.

Pilot Study of Therapy Dog Visits for Inpatient Youth With Cancer

This study assessed the feasibility of studying animal-assisted activities (AAA) in inpatient pediatric oncology and collected preliminary data on potential benefits of AAA for this population. Patients at a large pediatric hospital were identified using electronic medical records and approached with physician approval. Patients completed surveys before and after a therapy dog visit in their private hospital room. Data on infections were ascertained by electronic medical record review. Provider surveys were placed in provider common areas and distributed through a link in an e-mail. We summarized resultsusing descriptive statistics and estimated mean changes in pre- and postintervention distress and conducted hypothesis tests using the paired t test. The study population (mean age = 12.9 years) consisted of 9 females and 10 males. Following the therapy dog visit, patients had lower distress and significant decreases in worry, tiredness, fear, sadness, and pain. Providers were generally supportive of the intervention. Eight patients developed infections during the 14 days after the dog visit but none could be clearly attributed to the therapy dog visit. The study’s primary limitation was that there was no control group. However, results support the feasibility of and need for future studies on AAA in pediatric oncology.

Midlife women's symptom cluster heuristics: evaluation of an iPad application for data collection.

Objective:This study aims to elicit midlife womens heuristics about symptom clusters they were experiencing, as identified by the Computerized Symptom Capture Tool for Menopause (C-SCAT M). Methods:Women aged 40 to 60 years who were experiencing symptoms that they associated with menopause were recruited through flyers posted on campus and in clinics. Women completed the C-SCAT M application (app), using an iPad, by identifying and drawing symptom clusters they experienced during the last 24 hours, indicating relationships among symptoms, prioritizing the clusters and symptoms within them, making causal attributions, and identifying exacerbating and ameliorating factors. They were asked to prioritize the clusters and a symptom within each cluster. While women were completing the app, they were asked to “think aloud” about their experience using the app. Data generated from the C-SCAT M app were transmitted securely to an Amazon Web Services account and saved as screen images and Excel files to preserve both graphical images and text elicited from the app. Qualitative data were saved in verbatim phrases. Conventional content analysis was used to analyze qualitative data. Results:Thirty women completed the app. Most women (77%) stated that the final diagrams were very/extremely accurate in depicting their symptoms and their connections. Women reported between 1 and 22 symptoms (median, 11). Hot flashes, waking up during the night, night sweats, and early morning awakening were the most commonly reported symptoms. Women rated hot flashes as their most bothersome symptom, followed by waking up during the night and fatigue. They reported more than 300 different bivariate relationships between their symptoms and more than 150 unique causal paths. They believed that hot flashes caused several symptoms, especially sleep disruption, and most could describe the time order of their symptoms. Women reported clusters consisting of 2 to 18 symptoms. Women also named each cluster based on their response to their symptoms (“really annoying”), time of occurrence (“night problem”), and symptoms included in the cluster (“hot flash”). They attributed their clusters to menopause, life demands, and other symptoms, among other causes. Management strategies that women used included over-the-counter preparations, sleep, rest, and other lifestyle changes. Some women requested for a copy of their final symptom cluster diagram to discuss with their healthcare providers. Conclusions:Use of the C-SCAT M affords women an opportunity to depict their symptoms and clusters and the relationships between them and to provide narrative data about their heuristics. Womens unsolicited comments about using the cluster diagram to facilitate conversations (about their symptoms) with their healthcare providers suggest the potential value of modifying the C-SCAT M and evaluating its use in a healthcare setting.

Facilitating Teamwork in Adolescent and Young Adult Oncology

A case of a young adult patient in the days immediately after a cancer diagnosis illustrates the critical importance of three interrelated core coordinating mechanisms-closed-loop communication, shared mental models, and mutual trust-of teamwork in an adolescent and young adult multidisciplinary oncology team. The case illustrates both the opportunities to increase team member coordination and the problems that can occur when coordination breaks down. A model for teamwork is presented, which highlights the relationships among these coordinating mechanisms and demonstrates how balance among them works to optimize team function and patient care. Implications for clinical practice and research suggested by the case are presented.