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Advances in Social Sciences Research Journal – Vol.7, No.8

Publication Date: August 25, 2020

DOI:10.14738/assrj.77.8568.

Mazzotti, E., Constantini, A., Genthon, L., Tafuri, A., Osti, M. F., & Marchetti, P. (2020). The Perception Of The Information Received

From The Doctor, A Study On 103 Onco-Hematological Patients With Metastatic Disease. Advances in Social Sciences Research Journal,

7(8) 93-97.

The Perception Of The Information Received From The Doctor, A

Study On 103 Onco-Hematological Patients With Metastatic Disease

Eva Mazzotti

Department of Clinical and Molecular Medicine,

Sapienza University of Rome, Andrea Hospital, Italy

Anna Costantini

Psycho-Oncology Departmental Unit,

Sant’ Andrea Hospital, Sapienza University, Rome, Italy

Laurent Genthon

Psycho-Oncology Departmental Unit,

Sant’ Andrea Hospital, Sapienza University, Rome, Italy

Agostino Tafuri

Department of Clinical and Molecular Medicine,

Sapienza University Rome, Sant’ Andrea Hospital, Italy

Mattia Falchetto Osti

Department of Translational Medicine,

Sapienza University of Rome, UOC Radiotherapy,

Sant’ Andrea Hospital, Italy

Paolo Marchetti

Department of Clinical and Molecular Medicine,

Sapienza University of Rome, Andrea Hospital, Italy

ABSTRACT

The aim of the study was to evaluate the perception that onco- hematological patients with metastatic disease have regarding the

information received on their disease and treatment. Method. EORTC

QLQ-INFO25 was administered anonymously to 103 patients. Results.

69% of patients were satisfied and 76% rate the information received

very useful. More than half of the sample is not satisfied with the

information on the effects of therapy on social and family life (53%), the

effects of therapy on sexual activity (73%), the possibility of receiving

extra-hospital care (78%), the rehabilitation services (81%), how to

manage the disease at home (56%), the professional psychological

support (69%). Overall, 46% would have preferred to receive more

information, and 2% less. Discussion. The responses show that the

greatest satisfaction is for the areas of purely medical relevance

(information on the disease, information on medical investigations and

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Advances in Social Sciences Research Journal (ASSRJ) Vol.7, Issue 8, August-2020

information on the therapy carried out). Information by the doctor

becomes deficient, from the patient's point of view, for those thematic

areas that doctors did not consider to be their competence. Conclusion.

Our data shows the lack of exchange between doctor and patient, in both

directions and highlighted the need for training doctors on

communication skills on psycho-social issues and quality of life

concerns.

Keywords: cancer, doctor-patient communication, EORTC QLQ-INFO25,

unmet needs.

INTRODUCTION

"Information" constitutes a medical act capable of influencing compliance, of reducing levels of

anxiety, depression and stress, of improving the relationship and communication with the patient

and family members and, more generally, the quality of life and satisfaction with the care received

(Pinto et al, 2014; Arraras et al, 2007; Arraras et al, 2011).

The data underline that doctor-patient communication is more effective when patients' perception

of the information received is assessed. This feedback is important both because doctors and

patients do not have the same perception of priorities and relevant aspects to be addressed, and

because patients' needs may vary over time (Arraras, 2010). Aligning the “patient’s information

needs” with the “information received from the patient” allows to improve trust towards the

medical team, and helps the patient to better understand diagnosis, prognosis and treatment. And

last but not least, it is the basis for acquiring informed consent (Arraras et al, 2011).

It is important to consider that the need for information does not end at the time of diagnosis and

planning of the treatment but persists throughout the course of the disease, evolving into new areas

of information need such as extra-hospital assistance, rehabilitation, possible professional

psychological support, the effects of therapy on sex life and how to manage the disease at home

(Arraras et al, 2011).

Patients with metastatic disease usually have a longer history of disease, greater needs related to

quality of life and experience a higher level of distress (Brufsky et al, 2017; De Vries et al, 2014).

They also need information to access advance care planning in end of life care, as required by Italian

law (n.219 of 22/12/2017).

The aim of the study was to evaluate the perception that onco-hematological patients with

metastatic disease have regarding the information received on their disease and treatment.

METHODS

The sample consists of 103 cancer patients with metastatic disease and/or with hematological

malignancies that do not respond to conventional therapies.

The study on the perception of the information received has been proposed to patients belonging

to the clinical services of the Sant 'Andrea hospital. After illustrating the objectives and purposes of

the study and collecting the informed consent, the research staff handed the patient the

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URL: http://dx.doi.org/10.14738/assrj.78.8568 95

Mazzotti, E., Constantini, A., Genthon, L., Tafuri, A., Osti, M. F., & Marchetti, P. (2020). The Perception Of The Information Received From The Doctor, A

Study On 103 Onco-Hematological Patients With Metastatic Disease. Advances in Social Sciences Research Journal, 7(8) 93-97.

questionnaire to be filled out anonymously and inserted into a special container. The survey was

carried out in an index month (June 2019).

Instruments

EORTC QLQ-INFO25 is a reliable measure of patients’ perceptions of received information. It

contains four scales (information about the disease, medical tests, treatments, and other services)

and eight single items (different places of care; things that you can do to help yourself get well;

written information; information on CD or tape/video; satisfaction; wishes to have received more

or less information and in which areas; information helpfulness). INFO25 also includes two open

questions allowing patients to write about topics of their choice. Overall, INFO25 comprises 25

items. The response format is on a 4-point Likert scale from 1 (not at all) to 4 (very much), except

for 4 dichotomous yes/no items (51-55).

Socio-demographic and clinical information has also collected.

RESULTS

One hundred and three patients, 52 (50.49%) males and 51 (49.51%) females, with an average age

of 64 years, were enrolled in the Oncology Units (n=66), Radiotherapy (n=10), Hematology (n=10 ),

Simultaneous Onco-hematological care (n=7), Pneumology (n=2) and Thoracic Surgery (n=1).

Sixty-eight (66.02%) were married, 88 (85.44%) had children, 23 (22.33%) had more than 13 years

of schooling, 25 (24.27%) worked full time and 53 (51.46%) were retired. Twelve (11.65%) live

alone. For 72 (69.90%) more than 12 years have passed since diagnosis, for 12 (11.65%) from 0 to

six months.

Thirty (29.13%) have lung cancer, 18 (17.48%) breast, 17 (16.50%) colon, 10 (9.71%) lymphoma,

and 28 (27.18%) other types of cancer.

Seventy percent of patients, report having received “quite a bit or very much” information on the

disease, 82% on medical investigations and 64% on the therapy carried out. 71% of subjects report

having received “a little or not at all” information on other services.

Specifically, patients declare that they have received “quite a bit or very much” information on the

diagnosis (84%), on the extent of the disease (75%), on the state of the disease (80%), on the

purpose of the medical tests carried out (81%), on the medical examination procedures (77%), the

results of the tests carried out (88%), ongoing medical therapy (89%), the expected benefits of

therapy (79%), the possible side effects of therapy (73%), and the expected effects on the symptoms

of the disease (67%). 69% were satisfied and 76% rate the information received very useful.

Sixty percent believe they have received “a little or not at all” information about the possible causes

of the disease, 53% regarding the effects of therapy on social and family life, 73% regarding the

effects of therapy on sexual activity, 78% on the possibility of receiving extra-hospital care, 81% on

rehabilitation services, 56% on how to manage the disease at home, 69% on the possibility of

receiving professional psychological support, 75% on the possibility of treatment in different

environments, 56% of the actions to be taken that help to recover.