Information needs and requirements in patients with brain tumours and their relatives

Abstract

Patients with brain tumours face a number of medical and social challenges. Previous studies have shown that these patients and their relatives need a high level of patient-oriented information and counselling. However, these needs are often underestimated. In this single-centre cross-sectional study, we evaluated, for the first time, the information needs of patients with brain tumours and their relatives depending on diagnosis, age and level of education. The participants were interviewed using pre-specified questionnaires. Answers were evaluated descriptively using standard statistical methods. A total of 888 questionnaires were sent out. The return rate was 50.7%. The majority of patients (nP = 103; 59.9%) and a higher proportion of relatives (nR = 103; 72.5%; p = 0.019) wished to receive a maximum of information. The majority (79.7% of patients; 83.1% of relatives) also stated that they preferred a personal, face-to-face meeting as primary source of information. The need for information increased with education (p = 0.015), and decreased with tumour grade (p = 0.025) and age (p = 0.118). Our data indicate that patients with brain tumours and their relatives have high information needs throughout their disease and continuously require information and counselling. Optimal provision of information is based on personal preferences, which needs to be evaluated appropriately. Patient-oriented information and counselling are parts of a successful communication strategy that can improve cancer care significantly.

Unmet supportive care needs of patients with rare cancer: A systematic review

“…Four studies (Halkett et al, 2015;Langbecker & Yates, 2016;Reinert et al, 2018;Renovanz et al, 2017) were identified that quantified unmet supportive care needs of persons diagnosed with rare CNS cancer (i.e., primary brain tumour). Unmet needs were highest in the psychological domain (24-56%), followed by the physical and daily living domain (15-50%) and the healthcare system and information domain (15-30%), and these needs were reported throughout the whole disease trajectory.…”

“…D.V. Oberoi, White, Seymour, Prince, et al, 2017b;O'Brien et al, 2017;Pateman et al, 2015;Peeters et al, 2018;Philp et al, 2017;Piil et al, 2018;Pongthavornkamol et al, 2019;Putri et al, 2018;Reinert et al, 2018;Renovanz et al, 2017;Richardson et al, 2015;Rietveld et al, 2018;Saroa et al, 2018;Shun et al, 2018;Singh et al, 2017;Skoogh et al, 2013;Smith et al, 2013; W.K. So et al, 2019;Sperling et al, 2014;Vermeer et al, 2015;Wells et al, 2015;Williamson et al, 2018;Wolin et al, 2017;Yu et al, 2017;Zeng et al, 2017).Studies were conducted in Europe (N = 19), Australia/New Zealand (N = 13), Asia (N = 9), Canada (N = 9), United States (N = 5) and Africa (N = 2).…”

Prognostic disclosure in cancer care: a systematic literature review

“… 19 Similarly, according to a study by Ghoshal et al , 20 the patients felt that knowing a diagnosis and prognosis may help them to be prepared, plan additional treatment, anticipate complications, and plan for the future and family. The strong desire among caregivers to protect the physical and psychological well-being of patients was noted by Victor et al 21 while the majority of the patients in a study by Reinert et al 22 expressed the need for more information preferably through a personal, face-to-face meeting. This was supported by nearly two-thirds of patients and one-fourth of caregivers who reported that prognostic information was important according to Diamond et al 23 Disclosing more detailed information to terminally ill cancer patients contributed to a better quality of communication, irrespective of the stage of disclosure as estimated by two studies.…”

Prevalence of collusion in cancer communications: A meta‐analysis

“…Full texts of 126 articles were screened. A total of 27 studies fulfilled eligibility criteria and were thus eligible for inclusion in this systematic review and meta‐analysis 2,3,8‐32 . Table 1 shows the characteristics of included studies with the prevalence of collusion.…”