A Life Put on Pause: An Exploration of the Health-Related Quality of Life Issues Relevant to Adolescents and Young Adults with Cancer

Sodergren, Samantha; Husson, Olga; Rohde, Gudrun; Tomasewska, Iwona M; Vivat, Bella; Yarom, Noam; Griffiths, Helen; Darlington, Anne‐Sophie

doi:10.1089/jayao.2017.0110

Cited by 54 publications

(69 citation statements)

References 28 publications

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“…Our findings relating to the impact of cancer on education for AYAs replicate what we previously found (Sodergren et al, ) as well as other research (Ang et al, ; Chiang, Yeh, Wang, & Yang, ; Sandeberg, Johansson, Björk, & Wettergren, ) and features in measures used with young people such as the PedsQL (Varni, Burwinkle, Katz, Meeske, & Dickinson, ). It was also not surprising that the impact on education was more obvious for younger participants as they were mostly currently enrolled in education or had to suspend their education following their diagnosis.…”

Section: Discussionsupporting

confidence: 90%

“…To identify whether certain HRQoL concerns are more prominent amongst AYAs (14–25 years), we invited AYAs and older adults (26–60 years) to be interviewed. As part of the interview, participants were asked to review the relevance and importance of a list of HRQoL issues generated from AYAs aged 14–25 years (Sodergren et al, ) as well as issues captured from a systematic review of the literature on AYA oncology (Sodergren et al, ). The list included 77 issues organised according to the following categories: symptoms (physical, cognitive) ( n = 12 issues); activity restrictions (including disrupted life plans) ( n = 7); social (interactions with family and friends) ( n = 14); emotional ( n = 12); body image ( n = 3); self‐appraisals (how one feels about oneself) ( n = 7); outlook on life (including priorities) ( n = 9); lifestyle ( n = 5); treatment‐related (including treatment burden) ( n = 5) and life beyond treatment ( n = 5).…”

Section: Methodsmentioning

confidence: 99%

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Does age matter? A comparison of health-related quality of life issues of adolescents and young adults with cancer

et al. 2018

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Objective Health‐related quality of life (HRQoL) concerns of adolescents and young adults (AYAs) aged 14–25 years were compared with those of older adults (26–60 years) with cancer. Methods AYAs and older adults receiving curative intent treatment or supportive palliative care for cancer were recruited from eight research centres across Europe. Participants used a rating scale to score the relevance and importance of a list of 77 issues covering 10 areas of HRQoL concern: symptoms; activity restrictions; social; emotional; body image; self‐appraisals; outlook on life; lifestyle; treatment‐related and life beyond treatment. Results HRQoL issues were reviewed by 33 AYAs and 25 older adults. Several issues were recognised as relevant and important across all age groups: symptoms, emotional impact, outlook on life, lifestyle and treatment‐related. A number of issues were more relevant or important to AYAs including interrupted education, greater motivation to achieve academic goals, increased maturity, boredom, fertility and change in living situation. Conclusion While there is overlap in several of the HRQoL concerns across the age span, it is important that HRQoL measures used with AYAs capture the diverse and unique psychosocial aspects of this developmental stage.

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Section: Discussionsupporting

confidence: 90%

Section: Methodsmentioning

confidence: 99%

Does age matter? A comparison of health-related quality of life issues of adolescents and young adults with cancer

et al. 2018

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“…Recently, increased awareness has led to further research into the clinical and psychosocial needs of this group, including their health‐related quality of life (HRQOL) . Prior work suggests that unmet psychosocial needs include a need for information about cancer, infertility, and nutrition .…”

Section: Introductionmentioning

confidence: 99%

“…Prior work suggests that unmet psychosocial needs include a need for information about cancer, infertility, and nutrition . Qualitative and quantitative studies have identified areas of particular concern to AYAs, including symptoms, physical activity, relationships with others, fertility, body image, spirituality, and cognitive function (work or school) . However, previous studies have often focused on survivors rather than newly diagnosed patients and have not always explored priorities by age within the AYA group .…”

Section: Introductionmentioning

confidence: 99%

Things that matter: Adolescent and young adult patients’ priorities during cancer care

Graetz

Fasciano

Rodríguez‐Galindo

et al. 2019

Pediatric Blood & Cancer

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Background Adolescents and young adults (AYAs) experience cancer while balancing emerging identity and life goals. We investigated AYAs’ priorities during cancer, including psychosocial concerns, cure‐directed therapy, and potential late effects. Methods We surveyed 203 cancer patients aged 15–29 treated at Dana‐Farber Cancer Institute, Boston, Massachusetts, and their oncologists. Patients were approached and rated the importance of aspects of treatment, outcomes, and life during therapy. Response options were “extremely,” “very,” “somewhat,” “a little important,” or “not at all important.” Ratings of “extremely” or “very important” were used as indicators of strong priorities. Results Patients’ three most frequent priorities were cure (97%), being good to the people they care about (95%), and having supportive people around them (94%). Most prioritized being with family (90%), returning to school/work (89%), maintaining relationships with friends (88%), and feeling normal (85%). Fewer prioritized minimizing long‐term (78%) and acute side effects (68%) and fertility (59%). Many participants (88%) said that cure influenced their decisions “a great deal,” while fewer were influenced by side effects (32%), fertility (36%), or relationships (16%). Most patients (85%) thought their oncologist understood what was most important to them when treatment started. Conclusion Nearly all AYA cancer patients prioritize cure, while maintaining social relationships and a sense of normalcy. These priorities influence decisions they make about treatment to differing degrees, with cure influencing decision‐making for most patients. Although the priority of cure is well established, recognizing other AYA priorities allows providers to optimally support these patients from the time of diagnosis.

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“…While there are many reports of the measurement of HRQL attributed to this population, concerns have been raised about the suitability of the instruments used for this purpose, such as the absence of domains for sexuality and spirituality . In a study undertaken by the European Organization for Research and Treatment of Cancer (EORTC) Quality of Life Group, the results of interviews with 45 AYAs aged 14‐25 were reported recently . The categories of issues pertinent to HRQL were symptoms, activity limitations, disrupted life plans, adverse social impact, emotional morbidity, changes in body image, positive self‐appraisals, outlook on life, restrictions on lifestyle, treatment‐related sequelae, fertility and financial concerns.…”

Section: Hrql In Ayas With Cancer – Suitability Of Instrumentsmentioning

confidence: 99%

Health‐related quality of life in adolescents and young adults with cancer – Including a focus on economic evaluation

Barr

Feeny

2019

Pediatric Blood & Cancer

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Health‐related quality of life (HRQL) is an amalgam of three elements – the opportunities that a person's health status affords, the constraints that it places upon the person and the value that a person places on his/her health status. HRQL measures are specific, for example for a disease, or generic with broad applicability. The latter include preference‐based measures that can be used to generate quality‐adjusted life years and so contribute to economic evaluation. Measures of HRQL in adolescents and young adults (AYAs) with cancer may fail to capture some important dimensions, for example sexual health. However, the use of HRQL measures in this population has identified burdens of morbidity according to disease, treatment status and duration of follow‐up. There are few economic evaluations of the treatment of cancer in AYAs but preliminary evidence suggests that this is a cost‐effective undertaking. Opportunities abound to include measurement of HRQL in routine clinical care.

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A Life Put on Pause: An Exploration of the Health-Related Quality of Life Issues Relevant to Adolescents and Young Adults with Cancer

Cited by 54 publications

References 28 publications

Does age matter? A comparison of health-related quality of life issues of adolescents and young adults with cancer

Does age matter? A comparison of health-related quality of life issues of adolescents and young adults with cancer

Things that matter: Adolescent and young adult patients’ priorities during cancer care

Health‐related quality of life in adolescents and young adults with cancer – Including a focus on economic evaluation

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