Health locus of control in cancer patient and oncologist decision-making: An exploratory qualitative study.
Ontology highlight
ABSTRACT: Objective
To investigate how cancer patients' and family members' perspective and health locus of control are presented in clinical encounter decision-making.Methods
Semi-structured in-depth interviews were carried out with 16 cancer patients and 6 family members living in Israel (n = 22). Interviews were transcribed verbatim, and data were analyzed using thematic analysis.Results
Following the health locus of control model, the findings were divided into an external and internal locus of control themes, and we added a theme regarding shared decision-making. Internal locus of control sub-themes included asking for a second opinion, negotiating with the doctor, asking questions, looking for information, and fighting for their rights. External locus of control sub-themes included powerful others, oncologists, and fate. The dominant approach of most of the interviewees was an external locus of control. Women demonstrated more external locus of control than men. On the direct question of who should decide on treatment-the doctor, the patient, or both jointly-the answers ranged from only the doctor (n = 8) to together (n = 7) to only the patient (n = 8).Conclusions
This study provides insights into different aspects of locus of control in the clinical encounter involving cancer patients. The findings reflect the need to devote comprehensive attention to cancer patients' perceptions and experiences in the clinical encounter. A patient-centered care approach and a personalized framework for decision-making in cancer care are essential to achieving better treatment outcomes. Further research can engage in the development and validation of an up-to-date health locus of control questionnaire for cancer patients based on the findings of this study.
SUBMITTER: Dopelt K
PROVIDER: S-EPMC8794183 | biostudies-literature |
REPOSITORIES: biostudies-literature
Similar Datasets
Project description:PurposeWe sought to characterize patient-oncologist communication and decision making about continuing or limiting systemic therapy in encounters after an initial consultation, with a particular focus on whether and how oncologists foster shared decision making (SDM).MethodsWe performed content analysis of outpatient oncology encounters at two US National Cancer Institute-designated cancer centers audio recorded between November 2010 and September 2014. A multidisciplinary team used a hybrid approach of inductive and deductive coding and theme development. We used a combination of random and purposive sampling. We restricted quantitative frequency counts to the coded random sample but included all sampled encounters in qualitative thematic analysis.ResultsAmong 31 randomly sampled dyads with three encounters each, systemic therapy decision making was discussed in 90% (84 of 93) encounters. Thirty-four (37%) broached limiting therapy, which 27 (79%) framed as temporary, nine (26%) as completion of a standard regimen, and five (15%) as permanent discontinuation. Thematic analysis of these 93 encounters, plus five encounters purposively sampled for permanent discontinuation, found that (1) patients and oncologists framed continuing therapy as the default, (2) deficiencies in the SDM process (facilitating choice awareness, discussing options, and incorporating patient preferences) contributed to this default, and (3) oncologists use persuasion rather than deliberation when broaching discontinuation.ConclusionIn this study of outpatient encounters between patients with advanced cancer and their oncologists, when discussing systemic therapy, there exists a default to continue systemic therapy, and deficiencies in SDM contribute to this default.
| S-EPMC9377707 | biostudies-literature
Project description:ObjectivePatient involvement in treatment decisions is recommended in clinician-patient encounters. Little is known about how oncologists engage patients in shared decision making in non-Western countries. We assessed the prevalence of shared decision making among Singaporean oncologists and analysed how they discussed prognosis.MethodsWe audio-recorded 100 consultations between advanced cancer patients and their oncologists. We developed a coding system to assess oncologist encouragement of patient participation in decision making and disclosure of an explicit prognosis. We assessed patient and oncologist characteristics that predicted these behaviours.ResultsForty-one consultations involved treatment discussions. Oncologists almost always listed more than one treatment option (90%). They also checked patient understanding (34%), discussed pros and cons (34%) and addressed uncertainty (29%). Oncologists discussed prognosis mostly qualitatively (34%) rather than explicitly (17%). They were more likely to give an explicit prognosis when patients/caregivers asked questions related to prognosis.ConclusionOncologists in our sample engaged their patients in decision making. They have areas in which they can improve to involve patients at a deeper level to ensure shared decision making. Findings will be used to develop an intervention targeting oncologists and patients to promote patient involvement in decision making.
| S-EPMC6978867 | biostudies-literature
Project description:BackgroundShared decision-making (SDM) is widely recommended and required by the Centers for Medicare and Medicaid for patients considering lung cancer screening (LCS).ObjectiveWe examined clinicians' communication practices and perceived barriers of SDM for LCS at three medical centers with established screening programs.DesignMulticenter qualitative study of clinicians participating in LCS.ApproachWe performed semi-structured interviews, which were transcribed and analyzed using directed content analysis, guided by a theoretical model of patient-clinician communication.ParticipantsWe interviewed 24 clinicians including LCS coordinators (2), pulmonologists (3), and primary care providers (17), 4 of whom worked for the LCS program, a thoracic surgeon, and a radiologist.ResultsAll clinicians agreed with the goal of SDM, to ensure the screening decision was congruent with the patient's values. The depth and type of information presented by each clinician role varied considerably. LCS coordinators presented detailed information including numeric estimates of benefit and harm. Most PCPs explained the process more generally, focusing on logistics and the high rate of nodule detection. No clinician explicitly elicited values or communication preferences. Many PCPs tailored the conversation based on their implicit understanding of patients' values and preferences, gained from past experiences. PCPs reported that time, lack of detailed personal knowledge of LCS, and patient preferences were barriers to SDM. Many clinicians perceived that a significant proportion of patients were not interested in specific percentages and preferred to receive a clinician recommendation.ConclusionsOur results suggest that clinicians support the goal of SDM for LCS decisions but PCPs may not perform some of its elements. The lack of completion of some elements, such as PCPs' lack of in-depth information exchange, may reflect perceived patient preferences for communication. As LCS is implemented, further research is needed to support a personalized, patient-centered approach to produce better outcomes.
| S-EPMC7018920 | biostudies-literature
Project description:BackgroundIn 2016 the UK Department of Health and Social Care published the results of a comprehensive review of efficiency in hospitals, identifying "unwarranted variation" in procurement (or purchasing) practices for materials, supplies and devices. Addressing this variation in materials and supplies procurement practice has been identified as particularly important for creating efficiencies in health service delivery. However, little is known about the behaviour and experiences of front-line individuals who make these procurement decisions, which has implications for the development of strategies to improve efficiency. The objective of this study is to improve understanding of the factors influencing procurement behaviour and decisions among requisitioners who use an internal electronic procurement portal for medical supplies and equipment, and identify areas where efficiency could be improved.MethodsQualitative semi-structured individual interview study, following approximately 70 h of exploratory observations on site. The study context was a large London National Health Service (NHS) healthcare provider (the Trust), where we focussed primarily on purchases managed by a large hospital. Participants were drawn from requisitioners from multiple directorates across the Trust (n = 15; of these n = 2 clinical staff members, n = 13 non-clinical).ResultsFour factors stood out in our analysis as directly affecting procurement decisions: (1) a high level of variation in electronic purchasing and inventory management procedures throughout the Trust, (ii) an inaccurate and cumbersome search facility on the internal electronic procurement platform, exacerbated by poor IT skills training and support (iii) an inefficient purchase approvals system and (iv) multiple working sites and cluttered environments. We observed that these factors led requisitioners to employ a variety of strategies or so-called 'workarounds' to overcome the challenges they encountered, including stockpiling, relying on internal and supplier relationships, by-passing procedures to save time, purchasing outside existing agreements to save cost, and (re) delegating purchasing responsibilities among requisitioner staff - which both addressed and created difficulties.ConclusionsWorking with the assumption that staff 'workarounds' indicate where main issues lie, we offer four possible explanations to why they occur: (a) to maintain services and prepare for future care requirements, (b) to save on costs for the organisation, (c) to develop skills and development in purchasing and (d) to break silos and work collaboratively. These four explanations help provide initial starting points for improving efficiencies in health supplies' procurement processes.
| S-EPMC8512597 | biostudies-literature
Project description:To characterize patient preferences for medical surrogate decision-makers in the ICU to capture the complexity of decision-making preferences and highlight potential conflicts between patients' preferences and clinicians' surrogate decision-maker identification in usual clinical practice.DesignProspective qualitative cross-sectional study.SettingTwo ICUs in a quaternary referral center in the eastern United States.PatientsConvenience sample of patients admitted to the ICU and their family members.InterventionNone.Measurements and main resultsTwenty-six patient-family-clinician units were interviewed. Men were three times more likely than women to have a legally appointed decision-maker that matched their preferred decision-maker as expressed in the interview. Patients who were married or in a long-term relationship were the most consistent group of respondents, with 94% of them selecting their spouse or partner as the preferred decision-maker. The most common reasons for selecting a surrogate decision-maker were intangible themes such as feeling "known" by that person rather than having prior discussions about specific wishes or advance directives.ConclusionsAsking about a patient's familial network and qualities they value in a surrogate decision-maker may aid ICU teams in honoring patients' wishes for surrogate decision-making. This may be an important supplement to accepted legal hierarchies for proxy decision-makers and advance directive documents. Further studies with larger sample sizes could be used to shed light on the nuances of familial and relationship networks of a more diverse population of respondents.
| S-EPMC8323795 | biostudies-literature
Project description:OBJECTIVE:To evaluate the impact of integrating patient-reported outcomes (PROs) into routine clinics, from the perspective of patients with RA, clinicians and other staff. METHODS:We conducted a prospective cohort study using a mixed methods sequential explanatory design at an academic arthritis clinic. RA patients completed selected Patient-Reported Outcomes Measurement Information System measures on tablets in the waiting room. Results were immediately available to discuss during the visit. Post-visit surveys with patients and physicians evaluated topics discussed and their impact on decision making; patients rated confidence in treatment. Focus groups or interviews with patients, treating rheumatologists and clinic staff were conducted to understand perspectives and experiences. RESULTS:Some 196 patients and 20 rheumatologists completed post-visit surveys at 816 and 806 visits, respectively. Focus groups were conducted with 24 patients, 10 rheumatologists and 4 research/clinic staff. PROs influenced medical decision-making and RA treatment changes (38 and 18% of visits, respectively). Patients reported very high satisfaction and treatment confidence. Impact on clinical workflow was minimal after a period of initial adjustment. PROs were valued by patients and physicians, and provided new insight into how patients felt and functioned over time. Reviewing results together improved communication, and facilitated patient-centred care, shared decision making, and the identification of new symptoms and contributing psychosocial/behavioural factors. CONCLUSION:PRO use at RA visits was feasible, increased understanding of how disease affects how patients feel and function, facilitated shared decision-making, and was associated with high patient satisfaction and treatment confidence.
| S-EPMC7310086 | biostudies-literature
Project description:BackgroundDigital health-tracking tools are changing mental health care by giving patients the ability to collect passively measured patient-generated health data (PGHD; ie, data collected from connected devices with little to no patient effort). Although there are existing clinical guidelines for how mental health clinicians should use more traditional, active forms of PGHD for clinical decision-making, there is less clarity on how passive PGHD can be used.ObjectiveWe conducted a qualitative study to understand mental health clinicians' perceptions and concerns regarding the use of technology-enabled, passively collected PGHD for clinical decision-making. Our interviews sought to understand participants' current experiences with and visions for using passive PGHD.MethodsMental health clinicians providing outpatient services were recruited to participate in semistructured interviews. Interview recordings were deidentified, transcribed, and qualitatively coded to identify overarching themes.ResultsOverall, 12 mental health clinicians (n=11, 92% psychiatrists and n=1, 8% clinical psychologist) were interviewed. We identified 4 overarching themes. First, passive PGHD are patient driven-we found that current passive PGHD use was patient driven, not clinician driven; participating clinicians only considered passive PGHD for clinical decision-making when patients brought passive data to clinical encounters. The second theme was active versus passive data as subjective versus objective data-participants viewed the contrast between active and passive PGHD as a contrast between interpretive data on patients' mental health and objective information on behavior. Participants believed that prioritizing passive over self-reported, active PGHD would reduce opportunities for patients to reflect upon their mental health, reducing treatment engagement and raising questions about how passive data can best complement active data for clinical decision-making. Third, passive PGHD must be delivered at appropriate times for action-participants were concerned with the real-time nature of passive PGHD; they believed that it would be infeasible to use passive PGHD for real-time patient monitoring outside clinical encounters and more feasible to use passive PGHD during clinical encounters when clinicians can make treatment decisions. The fourth theme was protecting patient privacy-participating clinicians wanted to protect patient privacy within passive PGHD-sharing programs and discussed opportunities to refine data sharing consent to improve transparency surrounding passive PGHD collection and use.ConclusionsAlthough passive PGHD has the potential to enable more contextualized measurement, this study highlights the need for building and disseminating an evidence base describing how and when passive measures should be used for clinical decision-making. This evidence base should clarify how to use passive data alongside more traditional forms of active PGHD, when clinicians should view passive PGHD to make treatment decisions, and how to protect patient privacy within passive data-sharing programs. Clear evidence would more effectively support the uptake and effective use of these novel tools for both patients and their clinicians.
| S-EPMC10450536 | biostudies-literature
Project description:Background. Shared decision making is a cornerstone of an informed consent process for cancer treatment, yet there are often many physician and patient-related barriers to participation in the process. Decisions in cancer care are often perceived as relating to a discrete, treatment decision event, yet there is evidence that decisions are longitudinal in nature and reflect a multifactorial experience. Objective. To explore patient and caregiver perceptions of the choices and decision-making opportunities within cancer care. Design. Qualitative in-depth interviews with 37 cancer patients and 7 caregivers carried out as part of an evaluation of a cancer center's effort to improve patient experience. Results. Participants described decision making related to four distinct phases in complex cancer care, with physicians leading, and often limiting, decisions related to disease assessment and treatment options and access, and patients leading decisions related to physician selection. Though physicians led many decisions, patients had a moderating influence on treatment, such that if patients did not like options presented, they would reconsider their options and sometimes switch physicians. Patients had various strategies for dealing with uncertainty when faced with decisions, such as seeking additional information to make an informed choice or making a conscious choice to defer decision making to the physician. Limitations. Patients were sampled from one academic cancer center that serves a predominantly Caucasian, Asian, and Hispanic/Latino population and received complex treatment. Conclusion. Because of the complexity of cancer treatment, many patients felt as though they were a "passenger" in decision making about care and did not lead many of the decisions, though many patients trusted their doctors to make the best decisions and were comforted by their expertise.
| S-EPMC7294494 | biostudies-literature
Project description:PurposePatients with recurrent head and neck cancer (HNC) may feel overwhelmed at the prospect of having to consider treatment options particularly if they recently completed treatment for their primary disease or when they have no options that may lead to long-term survival. The purpose of this study was to examine patient priorities and preferences during treatment decision-making for recurrent HNC.MethodsIndividuals with newly diagnosed recurrent HNC were recruited at a National Cancer Institute-Designated Cancer Center. Participants were interviewed using a structured interview guide. Descriptive statistics were used to describe participants, and qualitative template analysis was used to analyze interview data.ResultsParticipants (n = 38) considered information from healthcare providers, likelihood of treatment success, and other patient-specific factors in making their treatment decisions.ConclusionsAlthough patients with recurrent HNC endorse a myriad of decision-making factors, the recommendation of their healthcare provider and the likelihood of treatment success are of paramount importance. Future research should focus on methods to rapidly identify patient priorities at the time of diagnosed recurrence while respecting patient coping and communication styles.
| S-EPMC7644586 | biostudies-literature
Project description:BACKGROUND:Guidelines recommend, and Medicare requires, shared decision-making between patients and clinicians before referring individuals at high risk of lung cancer for chest CT screening. However, little is known about the extent to which shared decision-making about lung cancer screening is achieved in real-world settings. OBJECTIVE:To characterize patient and clinician impressions of early experiences with communication and decision-making about lung cancer screening and perceived barriers to achieving shared decision-making. DESIGN:Qualitative study entailing semi-structured interviews and focus groups. PARTICIPANTS:We enrolled 36 clinicians who refer patients for lung cancer screening and 49 patients who had undergone lung cancer screening in the prior year. Participants were recruited from lung cancer screening programs at four hospitals (three Veterans Health Administration, one urban safety net). APPROACH:Using content analysis, we analyzed transcripts to characterize communication and decision-making about lung cancer screening. Our analysis focused on the recommended components of shared decision-making (information sharing, deliberation, and decision aid use) and barriers to achieving shared decision-making. KEY RESULTS:Clinicians varied in the information shared with patients, and did not consistently incorporate decision aids. Clinicians believed they explained the rationale and gave some (often purposely limited) information about the trade-offs of lung cancer screening. By contrast, some patients reported receiving little information about screening or its trade-offs and did not realize the CT was intended as a screening test for lung cancer. Clinicians and patients alike did not perceive that significant deliberation typically occurred. Clinicians perceived insufficient time, competing priorities, difficulty accessing decision aids, limited patient comprehension, and anticipated patient emotions as barriers to realizing shared decision-making. CONCLUSIONS:Due to multiple perceived barriers, patient-clinician conversations about lung cancer screening may fall short of guideline-recommended shared decision-making supported by a decision aid. Consequently, patients may be left uncertain about lung cancer screening's rationale, trade-offs, and process.
| S-EPMC6025674 | biostudies-literature