Perception of information to Swedish melanoma patients in routine clinical practice – a cross-sectional survey

Abstract

Background Comprehensible, relevant information empowers patients, allowing them to take an active part in their care. We aim to investigate how Swedish melanoma patients perceive information provided in routine clinical practice and explore the correlation between satisfaction with information, symptoms and functioning scales, and quality of life. Methods A cross-sectional study where EORTC QLQ-C30, EORTC QLQ-INFO25 and EQ-5D-3L questionnaires were sent to 1213 patients by post and 792 responded (65%). Results Only 0.5% reported that they wished to have received less information. The amount of information received and the satisfaction with that information was age-dependent, where older patients reported receiving less information than younger patients. Middle-aged patients were more satisfied with the information compared to both younger and older patients. The perception of having received sufficient information correlated negatively with anxiety. Higher satisfaction with the information also correlated positively with scores for functioning scales and negatively with degree of symptoms. No difference was perceived in information levels between disease stage apart from the scale “information about other services”, where patients with more severe disease reported receiving more information. Men and women reported equal satisfaction concerning the information received. Conclusions Patients lack sufficient information and age affects the perception of it. It is of utmost importance to tailor the information to suit the individual needs of a given patient, as satisfaction with the information received correlates with the patient’s well-being.

Validation of the EORTC information (QLQ-INFO25) and satisfaction with care (IN-PATSAT32) modules in Polish cancer patients’ population

“…The subject of the scope and type of information that should be received by the patient in the course of diagnosis and treatment of neoplastic disease needs to be explored [10][11][12]. The results remain inconclusive in terms of whether sociodemographic data such as: sex, age, education or type of treatment received should in uence the quantity of information received [4,9,13,14]. Research suggests that older patient may have altered needs for communication process e.g.…”

“…The literature seems conclusive regarding the need to disclose the information about their illness to the patients [4,9,17]. Yet, it should not be restricted to the diagnosis and treatment, but it should also include information about other places of care, self-help and psychological aid [9].…”

“…including family to a greater extent, using geriatric assessment prior to discussion with patient [12,13,15]. Another group with special communication needs may comprise lonely patients with worsening general condition [16].The literature seems conclusive regarding the need to disclose the information about their illness to the patients [4,9,17]. Yet, it should not be restricted to the diagnosis and treatment, but it should also include information about other places of care, self-help and psychological aid [9].…”

“…Another group with special communication needs may comprise lonely patients with worsening general condition [16].The literature seems conclusive regarding the need to disclose the information about their illness to the patients [4,9,17]. Yet, it should not be restricted to the diagnosis and treatment, but it should also include information about other places of care, self-help and psychological aid [9]. Potential bene ts resulting from proper communication are the improvement in patients satisfaction regarding treatment and diagnostic process, better cooperation with health-care providers, treatment compliance, lower distress [2,7,[18][19][20][21][22].There are numerous tools used for research on exploring patients perception of information and satisfaction with care.…”

“…The quality of this communication process correlates with the level of stress connected to cancer and its treatment [4]. This connection is also noticed in case of other aspects such as: experiencing some symptoms during the treatment, level of anxiety, risk of depression, the willingness to participate in clinical trials or even the survival [2,[4][5][6][7][8][9].The subject of the scope and type of information that should be received by the patient in the course of diagnosis and treatment of neoplastic disease needs to be explored [10][11][12]. The results remain inconclusive in terms of whether sociodemographic data such as: sex, age, education or type of treatment received should in uence the quantity of information received [4,9,13,14].…”