Perceived information provision and information needs in adolescent and young adult cancer survivors

Abstract

Knowledge on former diagnosis, treatment and survivorship is important for adolescent and young adult cancer survivors (AYACS) to make informed healthcare decisions. We aimed to (a) describe the information AYACS reported to have received, (b) identify current information needs and survivors' preferred format of communication, and (c) examine associations between information needs and cancer-related/socio-demographic characteristics, psychological distress and health-related quality of life (HRQoL). We identified AYACS (16-25 years at diagnosis; ≥5 years since diagnosis) through the Cancer Registry Zurich and Zug. Survivors received a questionnaire on information received and current information needs, socio-demographic information, psychological distress (Brief Symptom Inventory-18) and HRQoL (SF-12). Clinical characteristics were available from the cancer registry. We used descriptive statistics and univariable regression models. Of 160 responders, most reported to have received information on disease (96.3%), treatment (96.3%) and follow-up (89.4%), fewer on late effects (63.1%). Survivors reported information needs on late effects (78.7%), follow-up (71.3%), disease (58.1%) and treatment (55.6%). Information needs were associated with experiencing psychological distress and lower mental HRQoL. Most Swiss AYACS have information needs, especially on follow-up and late effects. Therefore, AYACS should be personally, continuously and proactively informed about their disease, treatment, follow-up care and late effects.

Survivors’ knowledge of their diagnosis, treatment and possible late adverse effects after autologous stem cell transplantation for lymphoma

“…Attendance in survivorship clinics has been suggested to improve the ability to learn about risks of late AEs. Fewer studies exist on survivors of cancer in adolescence or adulthood [14,15]. Despite similarities to survivors of childhood cancer concerning burden of potential late AEs during a post-treatment life span, studies of knowledge in survivors of HD-ASCT have not been done.…”

Information needs and research priorities for fertility preservation in women with breast cancer: patients and experts’ perspectives

“…Regarding the impact of BC and cancer treatments on fertility, several reasoning were gathered, including the following: 1) the possibility of getting pregnant naturally after treatment, compared to preservation methods; and 2) the impact of certain cancer drugs used in fertility treatments and the potential risks of pregnancies after overcoming the disease, due to the hormonal changes. These aspects correspond to first-line information that the professionals in charge of cancer treatments should provide to women with BC in fertility age (Christen et al, 2019), since the impact of the disease and cancer treatments on reproductive capacity are sensible areas for women that significantly impact their health-related quality of life (Anazodo et al, 2019;Mersereau et al, 2013;Villarreal-Garza et al, 2019).…”

“…Given that the impact of cancer treatments is due to the specificity of each woman's treatment plan (type of drug, dose, cycles administered, ovarian follicular reserve and age) (Alonso Zafra et al, 2013; Bermejo & Almonacid, 2010), it is crucial that professionals offers valid and personalised information in a clear and simple format (Christen et al, 2019). For which approaches of person‐centred care and shared decision‐making are crucial.…”

“…The information needs reported by patients can be defined as the recognition that their knowledge is inadequate to satisfy a goal within the context in which they find themselves at a specific moment in life (Ormandy, 2011). Is known that survivors who were able to satisfy their information needs about the disease and treatment effects had better health‐related quality of life and fewer levels of anxiety and depression (Christen et al, 2019). Besides, a recent systematic review identified patients´ communication and access to information as central components of oncofertility care (Anazodo et al, 2019).…”

Evaluating and providing quality health information for adolescents and young adults with cancer

“…Clinical experience and research suggest that a substantial proportion of AYA cancer patients do not routinely use digital technology and prefer health information delivered in print form such as books, magazines, newspapers, and medical brochures, or verbally from a trusted health professional. 6 One French study of noncancer AYAs conducted in 2010 showed that 78.7% reported being adequately informed by other means, including written information. 7 The key point is that health information needs to be personalized to the form and level of sophistication likely to be most useful to the patient and caregivers, including printed material in a patient's primary language for those who prefer it.…”