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

Rathberger, Katharina; Klinkhammer‐Schalke, Monika; Kölbl, Oliver; Proescholdt, Martin; Riemenschneider, Markus J.; Schuierer, Gerhard; Hutterer, Markus; Gerken, Michael; Hau, Peter

doi:10.1007/s11060-018-2811-y

Cited by 11 publications

(15 citation statements)

References 22 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…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.…”

Section: Unmet Needs Of Patients With Rare Cns Cancermentioning

confidence: 99%

“…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).…”

mentioning

confidence: 99%

See 1 more Smart Citation

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

et al. 2021

View full text Add to dashboard Cite

Objective: Patients with rare cancers may experience different unmet needs than those with common cancer. The objective of this systematic review was to (1) investigate unmet supportive care needs of rare cancer patients throughout the disease trajectory and (2) identify predictive factors for these unmet needs.Methods: PubMed, PsycINFO and CINAHL were searched for publications (January 2011 to March 2021) focusing on unmet needs of patients with rare cancer. Two reviewers independently selected studies, extracted data and performed quality assessment. Findings were synthesised. Results:The search yielded 4,598 articles, of which 59 articles met eligibility criteria and 57 were of medium or high quality. Rare cancer patients most frequently reported unmet needs in the healthcare system and information domain (up to 95%), followed by the psychological domain (up to 93%) and the physical and daily living domain (up to 80%). Unmet needs were mainly reported in the posttreatment phase.The most frequently identified predictors were higher anxiety, younger age and higher neuroticism. Conclusion:Patients with rare cancer have unmet needs throughout their disease trajectory. Supportive care needs of rare cancer patients should be addressed individually, depending on the rare cancer subdomain and phase of disease and from diagnosis onwards.

show abstract

Section: Unmet Needs Of Patients With Rare Cns Cancermentioning

confidence: 99%

mentioning

confidence: 99%

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

et al. 2021

View full text Add to dashboard Cite

show abstract

“… 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.…”

Section: Resultsmentioning

confidence: 98%

Prognostic disclosure in cancer care: a systematic literature review

Sutar

Chaudhary

2022

Palliat�Care

View full text Add to dashboard Cite

Background: Collusion in cancer care is the diplomatic concealment of information between a triad of the health care professional (HCP), patient, and caregiver. Free and expressive communication is determined by multiple factors, which establishes a healthy balance between ‘patient-centric’ and ‘family-centric’ decision making. The lack of a universal approach to prognostic disclosure techniques emphasizes the need for a systematic review of contemporary practice. Methods: A systematic review of the literature was conducted till June 2020 using themes based on cancer, communication, prognostic disclosure, and collusion by using Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Results: Fifty-three studies involving 10,569 subjects were studied for their utility on prognostic disclosure using different communication methods and interfaces. Twenty-three studies used a face-to-face interview with subjects while in-person telephonic interviews were conducted in two studies, 16 studies implicated semi-structured questionnaires, and 6 studies mentioned the development of a new technique/tool for disclosure. The duration of a session for prognosis-disclosure ranged from 22 min to 1 h. The involvement of palliative care specialists and mental health professionals was limited during the disclosure of the prognosis. Conclusion: The findings of the review indicate that patients in cancer care are aware of their diagnosis and to a certain extent of prognosis despite nondisclosure by their family members and treating teams. This review emphasizes the assessment of ‘disclosure wishes’ among patients and caregivers in separate interviews rather than simply relying on one specific method of interviewing. The nonconfrontational approach and training among HCPs are of utmost importance to build therapeutic resilience among the treating team involved in cancer care. Since many factors such as family wishes, cultural dissonance, medical model, and patient perception could become barriers to prognostic disclosure, there is a need to develop a universal approach to prognostic disclosure and handling associated collusion.

show abstract

“…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.…”

Section: Resultsmentioning

confidence: 99%

Prevalence of collusion in cancer communications: A meta‐analysis

2021

View full text Add to dashboard Cite

Introduction Collusion is the non‐disclosure of information about diagnosis or prognosis, frequently encountered in cancer care and palliative services. Unraveling collusion is a skill and differences among communication techniques by Health Care Workers have maintained the process of non‐disclosure to patients and caregivers. Identifying the prevalence of collusion in cancer care is required to improve the existing strategies across the world. Methods A systematic review of the literature from 1991 to 2020 in the English language was conducted with the protocol registration on PROSPERO ID (CRD 42021249216.) to identify the pooled prevalence of collusion. Results By using random effect model, the pooled prevalence estimate among patients for the diagnostic and prognostic collusion was 24.15, (95% CI [17.09; 32.96], Tou2 = 1.0801, I2 = 97.9%, Cochran's Q = 1058.22, df = 21, p‐value < 0.001) and 37.92, (95% CI [22.46; 56.30], Tou2 = 1.9641, I2 = 98.6%, Cochran's Q = 944.26, df = 13, p‐value < 0.001) respectively. There was no difference across subgroups with different types of setting for the interview, WHO regions and trend over the years. Conclusions Substantial prevalence of collusion goes unnoticed in cancer care. A meaningful understanding of such a large prevalence requires inquiry into the existing communication paradigm in cancer care across the world. The findings also question the need of formulating uniform interview techniques and structured assessment tools or questionnaires in cancer care to improve the disclosure rates.

show abstract

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

Cited by 11 publications

References 22 publications

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

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

Prognostic disclosure in cancer care: a systematic literature review

Prevalence of collusion in cancer communications: A meta‐analysis

Contact Info

Product

Resources

About