Information Preferences Of Patients Research Articles

Information preferences of patients with chronic blood cancer: A qualitative investigation.

Haematological malignancies (blood cancers) often follow chronic trajectories that can span many months or years. Management of these diseases typically involves periods of 'Watch & Wait', whereby patients are monitored by the hospital and only treated at progression, if or when this occurs, which might be never or on multiple occasions. Such remitting-relapsing pathways are unpredictable and can cause anxiety and distress. This study aimed to generate evidence about information preferences, with a view to underpinning future patient-facing resources; potentially mitigating psycho-social difficulties and promoting effective shared decision-making. A qualitative study was conducted, set within a UK population-based cohort of patients with haematological malignancies. Sampling was purposive, based on age (initially around the median age of diagnosis) and disease subtype (chronic lymphocytic leukaemia, follicular lymphoma, marginal zone lymphoma and myeloma); and in-depth interviews took place with 35 patients (10 with relatives). Analysis drew on qualitative description and thematic content analysis and included critical reading and annotation of transcripts, identification of common and rare phenomena, generation of codes and coding of material, and theme development. Patients discussed their preferences and experiences at length and rich data were generated from diagnosis onwards, across diagnostic subtypes. The overarching theme identified was 'Variations in preferences' with needs seen to differ from person to person; as well as changing over time for individuals. Five sub-themes were identified: 1) To know or not to know? 2) Needs are dynamic; 3) The polarising issue of prognosis; 4) Preferred sources; and 5) Differences in content, depth and presentation. Varied, dynamic information preferences indicate that resources should be developed in a way that provides maximum choice, enabling patients to select relevant material at different time-points on their trajectory. The development of blood cancer subtype-specific "real-world clinical scenarios" could improve patient experiences and inform shared decision-making.

Communication About Chimeric Antigen Receptor T-Cell (CAR-T) Therapy

Chimeric Antigen Receptor T-cell (CAR-T) therapy has revolutionized the treatment of patients with hematologic malignancies, yet treatment may coincide with the potential for life-threatening toxicities. Currently, no studies have investigated how oncologists communicate with patients about CAR-T therapy or what patients and their caregivers want to know prior to consenting for CAR-T therapy. This study characterizes the content of oncologist communication with patients and caregivers about the risks and benefits of CAR-T therapy and explore the information preferences of patients and their caregivers about CAR-T therapy. We conducted a multimethod study of 20 patients with hematologic malignancies referred for CAR-T therapy at the Massachusetts General Hospital and 10 caregivers. We audio recorded the initial outpatient visit with the oncologist to review and sign consent for CAR-T therapy. We subsequently surveyed patients and caregivers about information gaps that remained after consent. We then interviewed patients and caregiver about their perceptions of oncologist communication and information preferences after the consent visit, 1 month, and 3 months post-CAR-T therapy treatment. Qualitative data analysis was conducted using the framework approach. Six major themes regarding communication about CAR-T therapy were identified: (1) oncologists create a narrative of power and innovation about CAR-T therapy, (2) oncologists set clear expectations regarding CAR-T therapy, (3) oncologists preferentially discuss positive treatment outcomes and less frequently address treatment failures or uncertainties, (4) oncologists couple their discussion about risks of CAR-T therapy with assurances about risk mitigation strategies, (5) oncologists engage in empathetic communication throughout the consent visit, (6) patients and caregivers vary in their preferences regarding communication about CAR-T therapy but largely favor a positive discourse during the consent visit and (7) patients who completed CAR-T therapy and their caregivers report significant knowledge gaps during and after treatment. Overall, patients and caregivers felt well informed about CAR T-therapy yet identified communication gaps regarding, advanced care planning, treatment failure and treatment toxicities. A predominantly positive discourse between patients, caregivers, and oncologists around CAR-T therapy leaves patients and caregivers with significant knowledge gaps about negative outcomes. Further research is needed to help oncologists communicate about treatment uncertainties and help patients and their caregivers prepare for negative outcomes of CAR-T therapy.

How patients with advanced cancer conceptualize prognosis: A phenomenological qualitative inquiry

Background: Despite the importance of accurate prognostic understanding in patients with advanced cancer, there is little consensus around how to conceptualize and measure the multidimensional construct. Most studies focus on single aspects of prognostic understanding (e.g., curability) that clinicians have identified as important; no previous research has asked patients how they define “prognosis.” Aim: The present study examined how patients with advanced cancer conceptualize their “prognosis.” It also explored how patients assigned value to prognostic information and the impact of prognosis on life perspectives. Design: A phenomenological approach was used to analyze semi-structured interviews with individuals with advanced cancer to examine how patients define prognosis. Setting/participants: English and Spanish-speaking patients with advanced cancer (N = 29) were recruited from ambulatory clinics at a comprehensive cancer center in New York City. Results: To conceptualize prognosis, patients focused on concrete medical data, anticipated survival and quality of life, impact on meaningful life events, uncertainty, and physician affect. They discussed the importance of maintaining normalcy despite prognosis, knowledge as a form of coping, information reframing, and altered decision-making as means of coping with prognostic information. Conclusions: Given the range of ways patients define prognosis and assign value to prognostic information, clinicians should incorporate a thorough assessment of patient information preferences, values, and coping styles when engaging in end-of-life discussions. Trainings should emphasize the importance of nonverbal cues (i.e., affect management, body language) in prognostic disclosure.

Decisional involvement and information preferences of patients with hematologic malignancies

AbstractUnderstanding decisional involvement and information preferences in patients with hematologic malignancies may help to optimize physician-patient communication about treatment decisions and align the decision-making processes with patients' preferences. We described and examined factors associated with preferences of patients with hematologic malignancies for decisional involvement, information sources, and presentation of information. In a multicenter observational study, we recruited 216 patients with hematologic malignancies of any stage from September 2003 to June 2007. Patients were asked about their decisional involvement preferences (Control Preferences Scale), information sources (including most useful source of information), and preferences for their oncologists' presentation of treatment success information. We used multivariate logistic regressions to identify factors associated with decisional involvement preferences and usefulness of information sources (physicians vs nonphysicians). Patient-directed, shared, and physician-directed approaches were preferred in 34%, 38%, and 28% of patients, respectively. Physicians and computer/Internet were the most common information sources; 42% perceived physicians as the most useful source. On multivariate analysis, patients with less than a college education (vs postgraduate education) were less likely to perceive their physician as the most useful source (adjusted odds ratio [AOR], 0.46; 95% confidence interval (CI), 0.21-1.00), whereas patients with acute leukemia (vs other blood cancers) were more likely to perceive their physician as the most useful source (AOR, 2.49; 95% CI, 1.07-5.80). In terms of communicating treatment success rates, 70% preferred ≥1 method(s), and 88% preferred presentation in percentages. Our study suggests that decisional involvement and information preferences vary and should be assessed explicitly as part of each decision-making encounter.

The Informational Needs and Preferences of Patients Considering Surgery for Ulcerative Colitis: Results of a Qualitative Study.

Patients considering surgery for ulcerative colitis (UC) face a difficult decision as surgery may or may not improve quality of life. National Institute for Health and Care Excellence guidelines for UC emphasize the importance of providing quality preoperative information to patients but note no quality studies for the desired content of this information. Our aim was to explore patient information preferences prior to undergoing surgery for ulcerative colitis. Semistructured interviews with patients who underwent an operation and patients who considered but declined an operation were conducted. Interviews explored informational preferences, with emphasis on preoperative information given, preoperative information desired but not received, and retrospective informational desires. Interviews were transcribed and coded using an inductive thematic analysis using NVivo software. Data saturation was assessed after 12 interviews, with interviews continuing until saturation was achieved. Ethical approval was gained prior to interviews commencing (16/NW/0639). A total of 16 interviews were conducted before data saturation was achieved (male n = 7, female n = 9). Eight patients declined surgery, and 8 opted for subtotal colectomy with permanent end ileostomy (n = 5) or ileoanal pouch (n = 3). A total of 4 themes and 14 subthemes were identified. Three dominant subthemes of informational shortcomings emerged: "long-term effects of surgery," "practicalities of daily living," and "long-term support." Peer support was desired by patients but was infrequently supported by health care professionals. Current preoperative information does not address patient informational needs. Surgical consultations should be adapted to suit patient preferences. Clinical practice may need to be altered to ensure that patients are better supported following surgery.

Prognostic Disclosure in Acute Myeloid Leukemia (AML): A Qualitative Study of Patient Preferences and Physician Practices

Background: Many patients with high-risk AML have a poor understanding of their prognosis. However, little is known about patients’ preferences for receiving this information, nor about how oncologists (MDs) routinely approach conveying it.Methods: AML inpatients receiving chemotherapy completed semi-structured qualitative interviews about their experience with receiving an AML diagnosis, and any associated prognostic disclosure. MDs were also interviewed about their practices of conveying diagnostic and prognostic information. We used an inductive content analysis approach, a standard method in qualitative research.Results:We enrolled 19 patients and their 5 primary MDs. Mean patient age was 65.6, and all had high-risk disease due to either age >59, complex cytogenetics, or secondary AML/relapsed disease. Measured conservatively, at least 5 patients (26%) did not have a functional understanding of the term “prognosis.” Several key themes emerged, including: (1) patients’ thirst for more information, (2) physicians use of a standard approach to prognostic disclosure, and (3) variable patient information preferences regarding type and delivery method. Most patients wanted diagnostic and prognostic information to be delivered in a straightforward and honest manner, and most MDs reported presenting information in this way. However, some patients thought their MDs delivered this information very bluntly and without adequate preparation or context; others wanted more information, while a minority wanted less. Ten patients (53%) reported feeling so shocked about their diagnosis that their ability to comprehend information was impaired. While all MDs reported always discussing prognosis, 9 patients (47%) said they did not receive prognostic information. Some patients thought this reflected difficulty in calculating an accurate prognosis, or that MDs preferred not to give patients this information. Patients reported varying comfort levels with receiving prognostic information as numbers or statistics. MDs also had varying comfort levels with giving information in this way. Five patients (26%) reported receiving numerical prognostic information; 4 of these (21%) had asked specifically for numbers. MDs did not elicit patients’ preferences regarding type or nature of information delivery. Rather, several described using a standard “scripted response” in most cases. This “script” was only sometimes modified or supplemented, based on informal assessments of patients’ understanding, or because of questions patients asked.Conclusions: Patients have varying preferences for prognostic information delivery but MDs do not routinely assess patients’ preferences, instead delivering a standard amount and type of information with little variation or adaptation. While MDs report always discussing prognosis, many patients do not report receiving this information, and they describe emotional considerations as limiting their ability to process information. A more formal assessment of AML patients’ informational needs and preferences is recommended at diagnosis, along with follow-up assessments of their understanding and information retention thereafter. DisclosuresLeBlanc:Celgene: Research Funding; Helsinn Therapeutics: Research Funding. Abernethy:Advoset: Membership on an entity’s Board of Directors or advisory committees; Orange Leaf Associates: Employment; American Academy of Hospice and Palliative Medicine : President, President Other; Novartis: Consultancy; Pfizer: Consultancy; Bristol-Myers Squibb: Consultancy; Alexion Pharmaceuticals: Research Funding; Helsinn Therapeutics: Research Funding; Celgene: Research Funding; Amgen: Research Funding; Bristol-Myers Squibb: Research Funding; Genentech: Research Funding; BioVex: Research Funding; DARA BioSciences: Research Funding.

Communicating risk and shared decision-making in osteopathic practice: A pilot study using focus groups to test a patient information leaflet

IntroductionThe aim of this study was to explore the information needs of osteopathic patients and practitioners with respect to understanding of risk and shared decision-making about care. MethodsThe study comprised two stages, (i) design of an evidence-based patient information leaflet on the risks and benefits of osteopathic treatment and (ii) pilot focus groups with patients and practitioners to test the leaflet and explore user perceptions. Thematic analysis was used to analyse the transcript of the discussions. ResultsFive main themes emerged from the thematic analysis of the discussions. Both patients and practitioners saw the need for change (Theme 1) but perceived a tension between providing more information on risk and benefit, versus allowing adequate time for hands-on treatment within the consultation. This conflict may be exacerbated by complex attitudes to risk (Theme 2), a need for more patient education about osteopathy (Theme 4) and the diverse information preferences of patients (Theme 5). Patients currently exercise choices about their care; they were more positive than practitioners about being provided with choice of treatment (Theme 3). ConclusionsThis pilot study provides a valuable basis for the design of further research in order to enhance shared decision making in osteopathic practice. Further research, development and evaluation of the leaflet are required.This article belongs to the Special Issue: Ensuring and Improving Patients’ Safety in Integrative Health Care.

Information needs of early-stage prostate cancer patients: within- and between-group agreement of patients and health professionals

PurposeThe aims of this study were to analyze agreement on information needs within a group of early-state prostate cancer patients and to compare information preferences of patients with the view of health-care professionals about patients’ needs.MethodsSample consists of patients (n = 128) and six subgroups of health-care professionals (urologists, n = 32; nurses, n = 95; radiotherapy technologists (RTTs), n = 36; medical oncologists, n = 19; radiation oncologists, n = 12; general practitioners (GPs), n = 10). Information needs have been assessed with 92 questions concerning prostate cancer and its treatment. Respondents judged the importance of addressing each question. Within- and between-group agreements of patients and health-care professional groups were estimated with raw agreement indices as well as chance-corrected Kappa and Gwet’s AC1 measures. Finally, group-specific core items rated with high importance as well as high agreement were defined.ResultsPatients rated on average (median) half, i.e., 51 out 92 items as essential (interquartile range (IQR) = 36–66), 26 items as desired (IQR = 14–38), and 10 items as avoidable (IQR = 2–22). Within-group agreement on the presented information topics is modest for any participating group (AC1patients = 0.319; AC1professionals = 0.295–0.398). Agreement between patients and professionals is low too (AC1 = 0.282–0.329). Defining group-specific core sets of information topics results in 51 items being part of at least one core set. Concordance of the item core sets of patients and professionals is moderate with κ = 0.38–0.66, sensitivity of professionals’ core sets for patients’ preferences varies between 56 and 74 %.ConclusionsResults emphasize the need for dialogue between doctor/professional and patient in identifying the information needed by individual patients and support the importance of shared decision making.

Pharmacist and general practitioner ambivalence about providing written medicine information to patients—A qualitative study

Written medicine information is an important aspect of patient education, increasing patient knowledge and satisfaction. It can play an important role in promoting education, communication, and improving health literacy. In Australia, standardized, comprehensive written medicine information is available for all medicines. Patients' want such written information, however they report it is generally not supplied or there is limited interaction between healthcare professionals and patients when provided. A qualitative study was conducted to explore the opinions and attitudes of healthcare professionals toward the use of written medicine information in practice. The study involved focus groups with 32 general practitioners (4 groups), 29 community pharmacists (4 groups) and 7 hospital pharmacists (1 group) in Sydney and rural New South Wales. All discussions were transcribed verbatim and analyzed using thematic content analysis. Across the groups, professionals were aware of patients' needs for medicine information, but provision to patients in practice appeared the exception rather than the rule. Common reasons for non-provision were lack of time, possible creation of patient anxiety, low literacy, and perceived length and complexity of the information. Many desired more balanced information for patients on both benefits and risks. Most felt current materials were not useful information-sharing tools; some perceived that it undermined their relationship with patients. Improvement strategies proposed included increased consultation times and improved quality of the information. Participants were ambivalent about supplying written medicine information to their patients and concerned about its impact on the patient-provider relationship. This contributed to limited provision, despite the information being available for all medicines. A tailored approach to meet individual patient information preferences, together with efforts to support professionals as facilitators of information may increase written medicine information utilization as an information-sharing tool to improve health literacy and patient engagement.

The desire for involvement in healthcare, anxiety and coping in patients and their partners after a myocardial infarction

There is a lack of data about the information preferences of patients and their partners after a myocardial infarction. This paper explores anxiety, depression, coping and the desire to be actively involved in care in relation to age, gender and education level in myocardial infarction patients and partners. One hundred and twenty-eight patients and their partners answered the Swedish version of the Krantz Health Opinion Survey, the Hospital Anxiety and Depression Scale, and the Mastery Scale one year after the patient's myocardial infarction. More active roles in decision-making during care were desired by females, younger patients and partners, and patients and partners with higher education levels. Female partners reported more anxiety than male partners, and female patients reported more depression than male patients. No differences between groups were detected in coping; overall coping was rated high. Secondary prevention should consist of person-centred support to both the patients and their partners, since factors such as age, gender and education level can influence information preferences during patient care.

Patient information preferences and behaviour in relation to oral biopsies

Our aim was to study the impact of information on the behaviour of patients who were to have an oral biopsy specimen taken. Patients were randomly assigned either to be given the basic information about oral biopsy or a more extensive amount of information. The Krantz Health Opinion Survey was used as a measure of preferences in decisions made about oral biopsy, and we used a questionnaire to assess anxiety. A total of 260 patients were studied. The participants were satisfied with the information provided (both form and content), but significantly more of those given basic information would have liked to know more (p=0.02). We conclude that information exerts a clear effect on patients’ attitude to oral biopsy. Provision of preoperative information leads to significantly less anxiety in all patients having a procedure under local anaesthesia. The results emphasise that patients need to be adequately informed about oral biopsy.

Effects of interval between diagnosis and time of survey upon preferred information format for prostate cancer patients

Previous data indicate that receiving adequate information about their cancer can assist patients to cope with treatment and comply with treatment regimes. The aim of the present study was to determine whether time since diagnosis affected patients' evaluations of the information they had received at the time of their diagnosis. Two hundred and thirty-seven patients who had received a diagnosis and treatment for prostate cancer 4 months earlier completed a questionnaire about their ratings of, and preferences for, various types of information, their anxiety and depression levels and some background data. The most common and preferred form of information that the patients in the current study received was verbal information during an interview with their oncologist. Demographic factors and levels of anxiety and depression did not influence patient information preferences. Time since diagnosis was associated with elevated anxiety and depression, and consequent lower recall of having received information, but also with positive inflation of the value of the material that they did recall having received. Patients may not recall information given to them early after diagnosis and may make unreliable evaluations of its value to them due to psychological state.

Can the caregiver replace his/her elderly cancer patient in the physician–patient line of communication?

GOALS OF WORKS: Only few studies have focussed on the information needs of senior cancer patients. The aim of this study was to evaluate to what extent caregivers perceive their elderly cancer patients' informational needs. Between June 2004 and February 2005, at the National Cancer Institute of Aviano (northern Italy), we asked 112 elderly cancer patients naïve for treatments (age >65 years) and their 112 accompanying family members to fill in a self-administered questionnaire exploring the patient's information needs and his/her information-seeking behaviour. Elderly patients (60 males and 52 females, mean age 72 years) were mostly affected by genital-urinary (27%) or breast/gynaecological (25%) cancer. Caregivers were usually females (71%), daughters/sons (45%) and/or partners (41%). The interobserver agreement for the information request regarding cancer diagnosis and disease management, for the selected information sources consulted to acquire knowledge and for the reasons for seeking further information between the elderly patients and their caregivers were unsatisfactory to poor. Our results show that caregivers misunderstand the informational needs of their patients. Therefore, elderly patient information preferences cannot be predicted accurately by talking to relatives. The recommendation to oncologists is to be more responsive to the needs of both elderly cancer patients and their family members.

Patient information preferences among breast and prostate cancer patients

Preferences for information about their disease and treatment were collected from 392 patients who had been treated for either breast or prostate cancer an average of 2 years previously. Type of information that they had received, their ratings of its value to them and their preferred format for further information were examined. The most common and most preferred form of information was through doctor interview, followed by educational booklets. Prostate cancer patients preferred videotapes; breast cancer patients tended to prefer individualized approaches including a tour of the department. Effects of age, educational levels, occupational backgrounds and self-reports for anxiety and depression at the time of the survey and at time of diagnosis were analysed. Prostate cancer patients who were most severely depressed showed a preference for not receiving any information at all, perhaps reflecting a tendency towards withdrawal.

Empowering patients with essential information and communication support in the context of diabetes

Patients with diabetes need to be aware of essential information to be involved in decision-making, manage diabetes properly, and communicate with doctors and other healthcare providers effectively. We have developed Violet Technology (VT) to provide features beyond previous health information tailoring systems by dynamically prioritizing diabetes learning topics and providing integrated direct support for patient-provider communication through formulation of individualized agendas to take to healthcare encounters. A particular feature of the VT approach is a Diabetes Information Profile (DIP) that models psychosocial and educational exposure features, as well as clinical characteristics, and considers expressed patient information preferences and recent information browsing history. The agenda facility recommends questions that the patients may have based on their profile, as well as helping to initialize a patient empowerment protocol. The technology uses a modular and extensible approach for key components, including consumer health information, prioritization rules, and methods of instantiating the DIP. VT has been implemented into a web portal for patient use. Two phases of evaluation studies have been conducted to collect patient and healthcare provider feedback. Results indicate that VT prioritizes relevant and important information for individual patients. Moreover, both patients and providers indicate that formulating an agenda of questions is important for patients. More extensive system use is needed to establish if the technology can deliver an improved patient-provider partnership and, ultimately, improved health outcomes.

Should a diagnosis of Alzheimer's disease be disclosed?

There is evidence that some health practitioners may be reluctant to disclose a diagnosis of Alzheimer's disease (AD) to patients. However, this reluctance towards disclosure may not be in accordance with patient expectation. This study examined the attitudes of 100 undergraduate psychology students towards disclosure practices in relation to AD, before and after exposure to AD education. After AD education, 93% of participants indicated a desire to be informed of a diagnosis of AD, and 95% of participants were in favour of telling a close relative a diagnosis of AD. Results are discussed in terms of the relationship between age and attitudes towards AD diagnosis. It is concluded that the high rate of support for disclosure of AD diagnoses to patients among younger adults may reflect a change in the information preferences of patients brought about by a shift away from a patriarchal medical model, toward a more autonomous model of health.

No news is not good news: information preferences of patients with cancer.

AbstractMany patients express dissatisfaction with clinicians' information‐giving. When the information is complex or potentially upsetting, clinicians may deliberately withhold information, especially if they lack the skills to handle patients' emotional reactions. Others underestimate the amount of information patients require. In this study, a heterogeneous sample of 101 patients participating in a trial assessing the benefits of receiving audio‐taped recordings of their ‘bad news’ consultations, completed a questionnaire similar to Cassileth's Information Styles Questionnaire. This questionnaire assessed patients' preferences for both general and specific information about their disease and its treatment. Of the sample, 94% expressed a desire for as much information as possible from their oncologist, be it good or bad; 4% wished for information only if it was good news and 2% declined extra information, preferring to leave things up to the doctor. Patients wanting less specific or no extra information were older and had poorer prognoses than those wanting full disclosure. Although precise information needs varied between patients, this study showed that patients with cancer in general wish to be well‐informed about diagnosis, prognosis, therapeutic options and side‐effects.