Dataset Information

The Lifestyle Information and Intervention Preferences of Teenage and Young Adult Cancer Survivors: A Qualitative Study.

ABSTRACT:

Background

Little is currently known about how best to promote healthy lifestyle choices among teenage and young adult (TYA) cancer survivors. Such data gathered from a patient-centered perspective are instrumental for the development of health behavior change interventions for young people with cancer.

Objective

This study aimed to explore the lifestyle information needs of TYA cancer survivors and their preferences regarding lifestyle information and intervention delivery. Lifestyle behaviors of interest were physical activity, diet, smoking, alcohol consumption, and sun safety.

Methods

A total of 13 TYA cancer survivors (mean age, 22.9 years) participated in 10 individual interviews and 1 focus group (n = 3). Each interview and focus group followed the same semistructured interview guide, which was designed to explore young peoples' motivation behind leading a healthy lifestyle, their past experience of searching for lifestyle information, and their preferences relating to lifestyle information delivery.

Results

Three core themes emerged: cancer as a catalyst to lifestyle behavior change, factors influencing health behavior change, and health behavior information preferences. Social support emerged as facilitator of both health behavior change and self-efficacy.

Conclusion

Young people with cancer want age-appropriate lifestyle information on a range of topics delivered in multiple formats at various time points.

Implications for practice

Health professionals working with TYA cancer survivors should address young peoples' lifestyle information needs throughout the cancer care pathway and support young people to foster the confidence to make, and sustain, positive lifestyle behavior changes.

SUBMITTER: Pugh G

PROVIDER: S-EPMC6259678 | biostudies-literature | 2018 Sep/Oct

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

The Lifestyle Information and Intervention Preferences of Teenage and Young Adult Cancer Survivors: A Qualitative Study.

Pugh Gemma G Hough Rachael R Gravestock Helen H Haddrell Jessica B JB Beeken Rebecca J RJ Fisher Abigail A

Cancer nursing 20180901 5

<h4>Background</h4>Little is currently known about how best to promote healthy lifestyle choices among teenage and young adult (TYA) cancer survivors. Such data gathered from a patient-centered perspective are instrumental for the development of health behavior change interventions for young people with cancer.<h4>Objective</h4>This study aimed to explore the lifestyle information needs of TYA cancer survivors and their preferences regarding lifestyle information and intervention delivery. Lifes ...[more]

PMID: 28622193

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Project description:BackgroundCancer survivors are at an elevated risk for several negative health outcomes, but physical activity (PA) can decrease those risks. Unfortunately, adherence to PA recommendations among survivors is low. Fitness mobile apps have been shown to facilitate the adoption of PA in the general population, but there are limited apps specifically designed for cancer survivors. This population has unique needs and barriers to PA, and most existing PA apps do not address these issues. Moreover, incorporating user preferences has been identified as an important priority for technology-based PA interventions, but at present there is limited literature that serves to establish these preferences in cancer survivors. This is especially problematic given the high cost of app development and because the majority of downloaded apps fail to engage users over the long term.ObjectiveThe aim of this study was to take a qualitative approach to provide practical insight regarding this population's preferences for the features and messages of an app to increase PA.MethodsA total of 35 cancer survivors each attended 2 focus groups; a moderator presented slide shows on potential app features and messages and asked open-ended questions to elicit participant preferences. All sessions were audio recorded and transcribed verbatim. Three reviewers independently conducted thematic content analysis on all transcripts, then organized and consolidated findings to identify salient themes.ResultsParticipants (mean age 63.7, SD 10.8, years) were mostly female (24/35, 69%) and mostly white (25/35, 71%). Participants generally had access to technology and were receptive to engaging with an app to increase PA. Themes identified included preferences for (1) a casual, concise, and positive tone, (2) tools for personal goal attainment, (3) a prescription for PA, and (4) an experience that is tailored to the user. Participants reported wanting extensive background data collection with low data entry burden and to have a trustworthy source translate their personal data into individualized PA recommendations. They expressed a desire for app functions that could facilitate goal achievement and articulated a preference for a more private social experience. Finally, results indicated that PA goals might be best established in the context of personally held priorities and values.ConclusionsMany of the desired features identified are compatible with both empirically supported methods of behavior change and the relative strengths of an app as a delivery vehicle for behavioral intervention. Participating cancer survivors' preferences contrasted with many current standard practices for mobile app development, including value-based rather than numeric goals, private socialization in small groups rather than sharing with broader social networks, and interpretation of PA data rather than merely providing numerical data. Taken together, these insights may help increase the acceptability of theory-based mHealth PA interventions in cancer survivors.

Project description:BackgroundPhysical inactivity and unhealthy dietary habits are known to be disadvantageous for the development of late adverse effects in survivors of childhood, adolescent, and young adult cancer. To make interventions, aimed at improving lifestyle, fit into the daily life of survivors, interventions should be designed and delivered in a person-centred way with a limited time burden. As part of the European PanCareFollowUp project, an eHealth intervention was developed to support sustainable changes to physical activity levels and/or diet of childhood, adolescent, and young adult cancer survivors. This feasibility study aims to gain insight into the feasibility and potential effect sizes of the PanCareFollowUp lifestyle intervention.MethodsThe PanCareFollowUp lifestyle intervention consists of person-centred 3-6 screen-to-screen sessions with a certified lifestyle coach. The intervention will be evaluated with a single-arm pre-post feasibility study conducted at two survivorship care clinics in the Netherlands. A total of 60 participants who are (i) diagnosed with cancer <25 years, (ii) ≥ 5 years post-treatment, (iii) aged 16-55 years, and (iv) have a low physical activity level and/or unhealthy dietary intake manifested by overweight will be recruited. Using reports, hospital records, and questionnaires for survivors, coaches, and late effect doctors, feasibility will be based on (i) adherence to intervention, (ii) acceptability, (iii) practicality, (iv) integration/implementation, (v) demand, and (vi) attrition. The potential effect sizes of the intervention will be explored by determining the percentage of survivors that reach the personalized lifestyle goals that were set with the coach. Physical activity level, dietary intake, BMI, general self-efficacy, self-management, and motivation level will be assessed at three time points with questionnaires, reports, and/or an accelerometer.DiscussionData of this study will be gathered to assess the feasibility and potential effect sizes. This will allow for further intervention refinement as needed as well as to inform a future large-scale intervention study and a manual for implementation at other centres.Trial registrationInternational Clinical Trial Registry Platform (ICTRP) number: NL8932 (ICTRP Search Portal (who.int)). Registered on September 29, 2020.

Project description:BackgroundFew studies have investigated the risks of subsequent primary neoplasms after adolescent and young adult (AYA) cancer. We investigated the risks of specific subsequent primary neoplasms after each of 16 types of AYA cancer.MethodsThe Teenage and Young Adult Cancer Survivor Study is a population-based cohort of 200 945 survivors of cancer diagnosed when aged 15-39 years in England and Wales from Jan 1, 1971, to Dec 31, 2006. The cohort was established using cancer registrations from the Office for National Statistics and the Welsh Cancer registry. Follow-up was from 5-year survival until the first occurrence of death, emigration, or study end date (Dec 31, 2012). In this analysis, we focus on the risk of specific subsequent primary neoplasms after 16 types of AYA cancer: breast; cervical; testicular; Hodgkin lymphoma (female); Hodgkin lymphoma (male); melanoma; CNS (intracranial); colorectal; non-Hodgkin lymphoma; thyroid; soft-tissue sarcoma; ovarian; bladder; other female genital; leukaemia; and head and neck cancer. We report absolute excess risks (AERs; per 10 000 person-years) and cumulative incidence of specific types of subsequent primary neoplasm after each type of AYA cancer.FindingsDuring the 2 631 326 person-years of follow-up (median follow-up 16·8 years, IQR 10·5-25·2), 12 321 subsequent primary neoplasms were diagnosed in 11 565 survivors, most frequently among survivors of breast cancer, cervical cancer, testicular cancer, and Hodgkin lymphoma. AERs of any subsequent primary neoplasms were 19·5 per 10 000 person-years (95% CI 17·4-21·5) in survivors of breast cancer, 10·2 (8·0-12·4) in survivors of cervical cancer, 18·9 (16·6-21·1) in survivors of testicular cancer, 55·7 (50·4-61·1) in female survivors of Hodgkin lymphoma, and 29·9 (26·3-33·6) in male survivors of Hodgkin lymphoma. The cumulative incidence of all subsequent primary neoplasms 35 years after diagnosis was 11·9% (95% CI 11·3-12·6) in survivors of breast cancer, 15·8% (14·8-16·7) in survivors of cervical cancer, 20·2% (18·9-21·5) in survivors of testicular cancer, 26·6% (24·7-28·6) in female survivors of Hodgkin lymphoma, and 16·5% (15·2-18·0) in male survivors of Hodgkin lymphoma. In patients who had survived at least 30 years from diagnosis of cervical cancer, testicular cancer, Hodgkin lymphoma in women, breast cancer, and Hodgkin lymphoma in men, we identified a small number of specific subsequent primary neoplasms that account for 82%, 61%, 58%, 45%, and 41% of the total excess number of neoplasms, respectively. Lung cancer accounted for a notable proportion of the excess number of neoplasms across all AYA groups investigated.InterpretationOur finding that a small number of specific subsequent primary neoplasms account for a large percentage of the total excess number of neoplasms in long-term survivors of cervical, breast, and testicular cancer, and Hodgkin lymphoma provides an evidence base to inform priorities for clinical long-term follow-up. The prominence of lung cancer after each of these AYA cancers indicates the need for further work aimed at preventing and reducing the burden of this cancer in future survivors of AYA cancer.FundingCancer Research UK, National Institute for Health Research, Academy of Medical Sciences, and Children with Cancer UK.

Project description:Plain english summaryThis paper describes the methods that were used to develop a health behaviour intervention specifically for teenage and young adult cancer survivors (TYACS). The program of work, carried out in partnership with CLIC Sargent (a UK based cancer charity for children and young people) was guided by The Behaviour Change Intervention Design Process. A systematic review of existing intervention studies was carried out and TYACS were surveyed on their interest in receiving health behaviour information and their preference regarding the format, delivery and timing of such information. Health professionals were also surveyed to gather their views on how health behaviour information would be best delivered to young people with cancer. The results of these studies informed the development of a collection of health behaviour change intervention resources containing comprehensive lifestyle information and behaviour change support tools. TYACS and TYA health professionals were invited to review and provide feedback on the relevance, appeal and usability of the resources. It is hoped that by involving TYACS and TYA representatives at every stage of intervention development the problem of low uptake and adherence commonly encountered during intervention piloting will be prevented.AbstractBackground Teenage and Young Adult Cancer Survivors (TYACS) are advised to adopt a healthy lifestyle in order to reduce the impact of cancer and its treatments upon their long-term health. However, at present there are no interventions available in the UK to support TYACS to lead a healthy lifestyle. To inform the development of a lifestyle intervention for TYACS a partnership was set up between academic behavioural scientists and CLIC Sargent, a cancer charity which supports children and young people. Methods A series of studies to understand patient and professionals needs and perspectives regarding health behaviour change were carried out. TYACS were surveyed to gather data on their current health behaviour status; interest in, and experience of receiving, lifestyle advice; and preference regarding the type, format, and delivery of a lifestyle intervention. Health care professionals were surveyed simultaneously to gather their views on how best to promote health behaviour change to TYACS. In this paper we summarise key findings from the development work, the resulting lifestyle intervention, and new data from a preliminary evaluation study exploring TYACS and TYA health professionals' views on the relevance, appeal and usability of the intervention resources. Results A collection of health behaviour change intervention resources containing lifestyle information and behaviour change support tools were developed. These intervention resources were well received by TYACS and health professionals with the majority rating the information as high quality, helpful and relevant. Over 80% of TYACS reported they would find the support tools 'very appealing' or 'quite appealing'. TYACS and health professionals provided feedback on how the resources could be improved including commenting that more personalized or tailored health behaviour information would be beneficial. Discussion and conclusion It is hoped that by involving TYACS and TYA representatives at every stage of intervention development,and carrying out a preliminary evaluation of the intervention resources, the problem of low uptake and adherence commonly encountered during formal intervention piloting and evaluation will be prevented.

Project description:Purpose: Effective communication between young adult (YA; aged 18-39 years) cancer survivors and their health care providers is critical for managing post-treatment symptoms. Yet, little is known about YAs' and providers' preferences for and barriers to symptom communication, variables important for developing interventions to improve and optimize YA-provider communication. Methods: YA survivors (N = 21) and oncology providers (N = 11) rank ordered their preferred methods for symptom communication and top communication barriers. Interviews were conducted to obtain qualitative data (i.e., preferred methods for, barriers, and suggestions to improve symptom communication). Interviews were transcribed, and thematic qualitative analysis was used. Results: Sixty-two percent of YAs preferred communicating using the electronic messaging system affiliated with the medical record (MyChart), whereas providers (100%) preferred communicating during in-person clinic visits. Qualitative data from YAs pointed to benefits of MyChart, including ease of use and rapid responses. Providers acknowledged that, although efficient, high message volumes and expectations for rapid responses were barriers to MyChart. Providers described benefits of in-person visits, including visually assessing patients' concerns, providing immediate support, and more safely managing symptoms. Lack of time (48%) was YAs' top communication barrier, whereas providers endorsed patients not bringing up symptoms (64%). Qualitative data reflected patient-level (e.g., embarrassment/discomfort, lack of skills) and provider-level (e.g., forgetting to ask about a symptom) barriers. YAs and providers offered strategies to improve communication. Conclusion: Survivor- and provider-level communication interventions that account for YAs' and providers' differing communication preferences and directly address communication barriers unique to survivors' developmental stage may be necessary to improve symptom communication.

Dataset Information

The Lifestyle Information and Intervention Preferences of Teenage and Young Adult Cancer Survivors: A Qualitative Study.

Background

Objective

Methods

Results

Conclusion

Implications for practice

Publications

The Lifestyle Information and Intervention Preferences of Teenage and Young Adult Cancer Survivors: A Qualitative Study.

Similar Datasets

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