“Do I want to know it all?” A qualitative study of glioma patients’ perspectives on receiving information about their diagnosis and prognosis

Abstract

Purpose Glioma patients have poor prognosis. The amount of detail of disease-related information patients wish to receive is not known. The aim of this study was to explore glioma patients’ experiences and preferences regarding receiving information on diagnosis and prognosis. Methods Semi-structured interviews were performed with patients diagnosed with glioma. The interviews were analysed by qualitative content analysis without predefined categories by two independent coders. Results Ten women and 15 men, with newly diagnosed grade II–IV glioma, age 25–76 years, were interviewed. Participants’ experience on diagnosis communication was either indirect, meaning they found out their diagnosis unintentionally, e.g., from their electronic health record (EHR) instead of from their doctor, this causing anxiety and feelings of abandonment, insufficiently tailored: lacking in many aspects or individualised and compassionate. Participants generally wanted to know “the truth” about diagnosis and prognosis, but what they meant varied; some desired full honest information to allow for autonomous choices, others preferred general information without details, and some wanted no bad news at all, only positive information. Participants disclosed vulnerability after receiving their diagnosis, being cast into the unknown. They expressed a need for better everyday practical information to help create some control. Supportive staff could reduce participants’ distress. Conclusion There is a need to further develop and implement individually tailored information to glioma patients, both in consultations and patient-accessed EHR systems, which should have safe guards for sensitive information. Not all patients want to know it all, one size does not fit all.

Patient, Relative and Staff Experiences of Clinical Trial Participation in Neurooncology: “Maybe You Can Also Show the Positive, No Matter How It Ends”

“… 53 In our analysis, the crucial point seemed to be the individual understanding – by patients, relatives and staff – of what honest and truthful communication includes. Like Malmström et al and others illustrated, and was also shown here, this could differ widely per person 30 , 33 , 55 , 56 opening up the potential for conflict when individual understandings differ. Reflecting the communicational approach of our staff interviewees in context of the existing literature, their general approach seems to be in line with what is currently known about the communicational needs of patients and relatives.…”

Facilitating patient-oncologist communication in advanced treatment-resistant cancer: development and feasibility testing of a question prompt list.

“…The suggested procedure of this QPL use (i.e. provided by the oncologist, at initial consultations, in its long or short form as the oncologist feels is appropriate, patients' invitation to read it at home and to select questions they wish to discuss at a subsequent consultation) was designed to encourage patients to address questions of interest to them personally and in the time frame suiting their needs (32,33).…”

Communicating a negative prognosis by primary care physicians

“…Złożoność potrzeb i preferencji pacjentów w zakresie informacji sprawia, że rola lekarza jest w tym aspekcie trudna. Pacjenci chcą znać prawdę na temat swojego obecnego sta- nu zdrowia, choć zakres pożądanych informacji jest różny [11,12]. Większość pacjentów preferuje otrzymywanie pełnej informacji dotyczącej swojej sytuacji oraz dalszego postępowania (50-70% pacjentów, w zależności od okoliczności) [13], jednak wielu chorych oczekuje informacji jedynie o niezbędnych elementach wymaganych do podjęcia odpowiednich działań, co może być uwarunkowane obawą przed otrzymywaniem złych wiadomości, które mogłyby sprawić przykrość zarówno im, jak i ich bliskim [14].…”