Autonomy Preference Index Research Articles

Patient autonomy in self-managing their bronchial asthma exacerbation and its associated factors, 2024.

Asthma, a global chronic respiratory condition, varies in patient autonomy due to limited resources, health literacy, and cultural beliefs, emphasizing the importance of understanding this autonomy for improved asthma management. A cross-sectional study was conducted at Jimma University Comprehensive Specialized Hospital, involving face-to-face interviews with 175 patients. Data was collected on sociodemographic characteristics, clinical factors, and autonomy levels using a validated Patient Autonomy Preference Index. Descriptive statistics and binary logistic regression analysis were used. A total of 175 participants were recruited, out of them 41.7% (95% CI: 31.19, 40.41)) of participants were autonomous in managing their asthma exacerbation. 127 (72.6%) of study participants were female, with a mean age of 47.51 (SD ± 13.96), 101(57.7%) were live in urban areas, 54 (30.9%) had no formal education, 140 (80%) were married, 112 (64%) had health insurance, and 102(83.3%) obtained health information about their condition from healthcare workers. Reside in an urban area (AOR = 3.24; 95% CI: 1.40-7.49, p < 0.006), have health insurance (AOR = 4.30; 95% CI: 1.76-10.51, p < 0.001), those doing regular exercise (AOR = 4.79; 95% CI: 1.69-13.64, p < 0.003), have family history (AOR = 7.47; 95% CI: 1.61-34.60, p < 0.01), have a duration above five years since diagnosis (AOR = 0.44; 95% CI: 1.04-1.26, p < 0.003), and participants with a high level of health literacy (AOR = 1.10; 95% CI: 1.00-1.20, p < 0.042) become associated with being autonomous in managing asthma exacerbation. Only around forty-two percent of study participants were autonomous in managing their asthma exacerbation. Thus healthcare providers should give due attention to those who reside in rural areas, are not insured, recently diagnosed with asthma, and with low health literacy to enhance patient autonomy and self-management practices, ultimately improving health outcomes for individuals with asthma.

Getting specific: participation preference in urooncological decision-making

BackgroundShared decision-making is the gold standard for good clinical practice, and thus, psychometric instruments have been established to assess patients’ generic preference for participation (e.g., the Autonomy Preference Index, API). However, patients’ preferences may vary depending on the specific disease and with respect to the specific decision context. With a modified preference index (API-Uro), we assessed patients’ specific participation preference in preference-sensitive decisions pertaining to urological cancer treatments and compared this with their generic participation preference.MethodsIn Study 1, we recruited (N = 469) urological outpatients (43.1% urooncological) at a large university hospital. Participation preference was assessed with generic measures (API and API case vignettes) and with the disease-specific API-Uro (urooncological case vignettes describing medical decisions of variable difficulty). A polychoric exploratory factor analysis was used to establish factorial validity and reduce items.In Study 2, we collected data from N = 204 bladder cancer patients in a multicenter study to validate the factorial structure with confirmatory factor analysis.Differences between the participation preference for different decision contexts were analyzed.ResultsStudy 1: Scores on the specific urooncological case vignettes (API-Uro) correlated with the generic measure (r = .44) but also provided incremental information. Among the disease-specific vignettes of the API-Uro, there were two factors with good internal consistency (α ≥ .8): treatment versus diagnostic decisions. Patients desired more participation for treatment decisions (77.8%) than for diagnostic decisions (22%), χ2(1) = 245.1, p ≤ .001.Study 2: Replicated the correlation of the API-Uro with the API (r = .39) and its factorial structure (SRMR = .08; CFI = .974). Bladder cancer patients also desired more participation for treatment decisions (57.4%) than for diagnostic decisions (13.3%), χ²(1) =84, p ≤ .001.ConclusionsThe desire to participate varies between treatment versus diagnostic decisions among urological patients. This underscores the importance of assessing participation preference for specific contexts. Overall, the new API-Uro has good psychometric properties and is well suited to assess patients’ preferences. In routine care, measures of participation preference for specific decision contexts may provide incremental, allowing clinicians to better address their patients’ individual needs.

Patients' preferences in therapeutic decision-making in digestive oncology: a single centre cross-sectional observational study

Considering the preferences in Shared Decision Making (SDM) of patients with Digestive Cancer (DC) is crucial to ensure the quality of care. To date, there is limited information on preferences in SDM of patients with DC. The objectives of this study were to describe digestive cancer patients’ preference for involvement in therapeutic decision-making and to identify variables associated with these preferences. An observational prospective study in a French university cancer center has been conducted. Patients completed two questionnaires to qualify and quantify their preference for involvement in therapeutic decision-making: the Control Preference Scale (CPS) and the Autonomy Preference Index (API), which is composed of the Decision Making (DM) score and the Information Seeking (IS) score. Associations between these scores and socio-demographic data, disease-related data, coping strategies (Brief-COPE), physical (QLQ-C30) and psychological (HADS) quality of life were tested. One-hundred fifteen patients returned the questionnaires. The majority of patients reported a passive (49.1%) or a collaborative (43.0%) CPS status. The mean DM score was 39.4 Variables associated with decision-making preferences were occupational status and time since diagnosis. The identification of variables associated with patients' preferences for involvement in decision-making can help make clinicians aware of patients' needs and wishes. However, it can only be determined by interviewing the patient individually.

When attitudes and beliefs get in the way of shared decision-making: A mediation analysis of participation preference.

Certain sociodemographic characteristics (e.g., older age) have previously been identified as barriers to patients' participation preference in shared decision-making (SDM). We aim to demonstrate that this relationship is mediated by the perceived power imbalance that manifests itself in patients' negative attitudes and beliefs about their role in decision-making. We recruited a large sample (N = 434) of outpatients with a range of urological diagnoses (42.2% urooncological). Before the medical consultation at a university hospital, patients completed the Patients' Attitudes and Beliefs Scale and the Autonomy Preference Index. We evaluated attitudes as a mediator between sociodemographic factors and participation preference in a path model. We replicated associations between relevant sociodemographic factors and participation preference. Importantly, attitudes and beliefs about one's own role as a patient mediated this relationship. The mediation path model explained a substantial proportion of the variance in participation preference (27.8%). Participation preferences and attitudes did not differ for oncological and nononcological patients. Patients' attitudes and beliefs about their role determine whether they are willing to participate in medical decision-making. Thus, inviting patients to participate in SDM should encompass an assessment of their attitudes and beliefs. Importantly, negative attitudes may be accessible to change. Unlike stable sociodemographic characteristics, such values are promising targets for interventions to foster more active participation in SDM. This study was part of a larger project on implementing SDM in urological practice. Several stakeholders were involved in the design, planningand conduction of this study, for example, three authors are practising urologists, and three are psychologists with experience in patient care. In addition, the survey was piloted with patients, and their feedback was integrated into the questionnaire. The data presented in this study is based on patients' responses. Results may help to empower our patients.

Measuring veterinary client preferences for autonomy and information when making medical decisions for their pets.

To adapt the 3 scales of the Autonomy Preference Index to veterinary medicine and validate the 3 new scales to measure pet owner preferences for autonomy and information when making medical decisions for their pets. 10 small-animal veterinarians and 10 small-animal clients at a veterinary school-based community practice (pilot study) and 311 small-animal clients of the practice (validation study), of which 47 participated in a follow-up survey. Wording of items in the Autonomy Preference Index was adapted, and instrument wording was finalized on the basis of feedback obtained in the pilot study to create 3 scales: the Veterinary General Decision-Making Preferences Scale (VGDMPS), Veterinary Clinical Decision-Making Preferences Scale (VCDMPS), and Veterinary Information-Seeking Preferences Scale (VISPS). The 3 scales were then validated by means of administering them to small-animal clients in a clinical setting. The 3 scales had acceptable reliability and validity, but clients expressed concern over item wording in the VGDMPS during the pilot study. Overall, results showed that clients had a very high preference for information (mean ± SD VISPS score, 4.78 ± 0.36 on a scale from 1 to 5). Preferences for autonomy varied, but mean values reflected a low-to-moderate desire for autonomy in clinical decision-making (mean ± SD VCDMPS score, 2.04 ± 0.62 on a scale from 1 to 5). The VCDMPS was a reliable and valid instrument for measuring client preferences for autonomy in clinical decision-making. Veterinarians could potentially use this instrument to better understand pet owner preferences and tailor their communication approach accordingly.

Relationship between Post-menopausal women’s knowledge about pelvic organ prolapse and their autonomy preference

Background: Pelvic organ prolapse (POP) is one of the two most common manifestations of pelvic floor dysfunction among postmenopausal women worldwide. The prevalence of POP increases with age, with a peak incidence in women aged 60–69 years. It has a negative effect on postmenopausal women’s quality of life (Qol). Management of pelvic organ prolapse is challenging, it requires skillful health care providers and well-informed elder women. Person-centeredness is a crucial element and an indicator of the quality of care. It is advocated in healthcare policies worldwide. Yet, despite of its importance in person-centered care for prolapse, little is known about the extent to which health services are responsive to women’s needs and their perceived experiences when using the health services for management of prolapse. Aim of the study: The present study aimed to explore the relationship between Post-menopausal women’s knowledge about pelvic organ prolapse and their autonomy preference. Methods A descriptive correlational research design was utilized in this study. This study was conducted at the outpatient gynecology clinic on El Shatby Maternity University Hospital in Alexandria governorate, Egypt. A convenient sample of 142 post-menopausal women were recruited. Three tools were used for data collection; (1) socio-demographic and clinical data structured interview schedule, (2) Prolapse and Incontinence Knowledge Questionnaire (PIKQ), (3) modified version of autonomy preference index (API). Results More than three quarters (78.0%) of the studied women had lack of proficient knowledge about POP, whereas 22.0% had a proficient knowledge (50% and more correct) and although the studied women were highly preferred to participate in decision making concerning their health condition (62.4%±5.9), they had slightly lack of preference for information seeking (45.3±5.1%). The post-menopausal women’s knowledge about Pelvic Organ Prolapse was significantly correlated with their autonomy preference (r=.213, p=.011), as the score of knowledge increased the total autonomy preference score increase. Conclusion the post-menopausal women’s knowledge about Pelvic Organ Prolapse was significantly correlated with their autonomy preference. Encourage the healthcare professionals to inform the postmenopausal women about the available treatment options and motivate them to participate actively in making management decisions is recommended.

Factors associated with facilitating advance care planning based on the theory of planned behaviour.

In Japan, educational support for advance care planning is still limited, and the factors facilitating advance care planning practice have not been identified. The aim of this study is to identify the factors associated with advance care planning practice in Japan using the theory of planned behaviour. We conducted a cross-sectional study through a nationwide online questionnaire survey with 446 Japanese residents aged 20years and older. After categorizing participants into two groups based on who performed advance care planning, comparisons were made (univariate analysis) regarding attitudes towards advance care planning, willingness to perform advance care planning, subjective norms, sense of control in performing advance care planning, presence of and relationship with a family doctor, experience of seeing or using a ventilator, and degree of self-determination (Autonomy Preference Index) as well as sociodemographic data. In addition, a logistic regression analysis was performed using the factors with significant differences in the univariate analysis as independent variables and the existence of the implementation of advance care planning as a dependent variable. The group with advance care planning consisted of 106 participants (23.8%), and the group without advance care planning comprised 340 participants (76.2%). Through logistic regression analysis, age (odds ratio: 1.020), subjective norms (odds ratio: 3.276) and experience with mechanical ventilation (odds ratio: 1.997) were extracted as significant factors influencing advance care planning implementation. Advance care planning may be facilitated by providing support not only to the patients but also to their family members to be positively disposed towards advance care planning and by offering comprehensive education regarding using a ventilator.

Shared Decision-Making in Oncology: Preferences in Older versus Younger Patients of an Oncology Clinic – A Conjoint Analysis

Background: Data concerning older patients’ preferences with regard to physician-patient interaction and the concept of shared decision-making (SDM) in oncology are still sparse although significantly influencing treatment planning. Methods: Patients were recruited as a convenience sample from an outpatient oncology department. To test for patients’ attitudes toward participating in clinical decisions, the PEF-FB-9 questionnaire (the German version of SDM-Q9) and the autonomy preference index (API) instrument were applied. A conjoint analysis was performed by a full set of vignettes exposing three different clinical attributes: clinical experience in oncology of the responsible physician, type of hospital, and type of physician-patient interaction in decision-making. Two independent cohorts were retrieved: patients aged <65 years and patients aged >70 years. Results: A total of 71 patients were included. Younger subjects rated higher (44 vs. 10, p < 0.001) on the API scale. In both cohorts, physician-patient interaction received the highest preference values compared with type of hospital and physician experience. Analysis for age differences on preference values showed significantly higher values among the older patients concerning physician-patient interaction and lower values concerning type of hospital. Further analysis of the preferred type of physician-patient interaction revealed the highest preference in both cohorts for SDM. Conclusions: The high significance of physician-patient interaction could be proved. As a SDM approach is preferred in older and younger patients, an age-related different approach does not seem appropriate.

Patient autonomy in dentistry: demonstrating the role for shared decision making

BackgroundEvidence-based practice, decision aids, patient preferences and autonomy preferences (AP) play an important role in making decisions with the patient. They are crucial in the process of a shared decision making (SDM) and can be incorporated into quality criteria for patient involvement in health care. However, there are few studies on SDM and AP in the field of dentistry. This study explored patients’ autonomy preferences in dentistry in comparison to other medical domains, comparing them with patient preferences in two other cohorts of patients with different conditions and in different health care settings.MethodsA sample of 100 dental patients attending 16 dentists was consecutively recruited in a university-based prosthodontic clinic. Patients’ and dentists’ preferences regarding their roles in dental decision making for commonly performed diagnostic and treatment decisions were compared using the Control Preference Scale (CPS). This was followed by cross sectional surveys to study autonomy preferences in three additional cohorts recruited from general practices (n = 100), a multiple sclerosis clinic (n = 109), and a university-based prosthodontic clinic (n = 100). A questionnaire with combined items from the Autonomy Preference Index (API) to assess general and the CPS to assess specific preferences was used in the additional cohorts.ResultsDentists were less willing to give patients control than patients were willing to enact autonomy. However, decisions about management of tooth loss were considered relevant for a shared decision making by both parties. When comparing cohorts from different samples, the highest AP was expressed by people with multiple sclerosis and the lowest by patients in dentistry (means: dentistry 2.5, multiple sclerosis 2.1, general practice 2.4, p = .035). There were considerable intra-individual differences in autonomy preferences referring to different decision types (p < .001). In general, more autonomy was desired for treatment decisions in comparison to diagnostic decisions, for trivial compared to severe conditions, and for dental care compared to general practice (all: p < .001).ConclusionThere is an important role of patient participation in decision making in dentistry. Furthermore, PA should be considered with respect to specific medical decisions instead of assessing autonomy preferences in general implying a need for communication skills training of health care professionals.

Validity of the French version of the Autonomy Preference Index and its adaptation for patients with advanced cancer.

While patient-centered care is recommended as a key dimension for quality improvement, in case of serious illness, patients may have different expectations regarding information and participation in medical decision-making. In oncology, anticipation of disease worsening remains difficult, especially when patient's preferences towards prognosis medical information are unclear. Valid tools to explore patients' preferences could help targeting end-of-life discussions, which have been shown to decrease aggressiveness of end-of-life care. Our aim was to establish the validity and reliability of the French version of the Autonomy Preference Index (API) among patients with incurable cancer and in primary care setting. Three supplementary items were specifically developed to evaluate preparedness to anticipate disease deterioration among patients with incurable cancer. The psychometric properties of the API translated into French were assessed among patients consecutively recruited from January to March 2017 in the waiting rooms of 19 general practitioners (N = 391) and in an oncology (N = 187) clinic in Paris. Relationships between the newly-developed items and the API subscale scores were studied. A three correlated factors confirmatory model (two factors related to decision-making and a factor related to information-seeking preferences) showed an acceptable fit on the whole sample and no measurement invariance issue was found across settings, age, sex and educational level. Internal consistency and test-retest reliability were acceptable for the information-seeking and decision-making subscales. One of the newly-developed items on patients' ability to anticipate a decision on the use of artificial respiration if a sudden deterioration of their illness occurred was not related to the API subscale scores. The French version of the API was found valid and reliable for use in general practice and oncology settings. The additional items on patient preparedness to anticipate disease deterioration can be of interest to ensure that patient values guide all end-of-life clinical decisions.

How Much Information and Participation Do Patients with Inflammatory Rheumatic Diseases Prefer in Interaction with Physicians? Results of a Participatory Research Project.

ObjectivePatient preferences for information and participation in medical decision-making are important prerequisites to realize a shared decision between patients and physicians. This paper aims at exploring these preferences in German patients with inflammatory rheumatic diseases and at identifying relevant determinants of these preferences.MethodsIn a cross-sectional survey, adult patients with rheumatoid arthritis (RA), spondyloarthritis (SA) or different connective tissue diseases (CTS) filled out a questionnaire. Data were collected via a written questionnaire (1) sent to members of a regional self-help group or (2) handed out to patients at their rheumatologist’s appointment, and (3) via an online questionnaire available nationwide. Measurements included information and participation preferences (Autonomy Preference Index; API: 0–100), as well as health-related and sociodemographic variables. Analyses included ANOVAs (group differences) and multiple regression analyses (determinants of preferences). To ensure the analysis was patient-centered we involved a trained representative of the German League Against Rheumatism as a research partner.Results1616 patients returned questionnaires [44% response, 79% female, mean age 54 years, diagnoses 63% RA, 28% SA, 19% CTS]. Participants reported a concurring major preference for information but vastly different preferences for participation. A greater preference for participation was associated with female sex, younger age, higher household income, and self-help group membership. Conversely, a lower preference for participation was linked to blue-collar workers, retirement, higher confidence in the rheumatologist, and poorer health literacy.ConclusionWhereas patients consistently welcome comprehensive information about their disease and its different treatment options, not all patients wish to be involved in therapeutic decisions. Especially older patients with lower education status and lower health literacy, but higher confidence in their rheumatologist tend to leave the decisions rather to the physician. Different preferences should be considered in the doctor–patient communication.

Abstract P5-14-07: Accuracy of psychosocial assessments in an online surgical decision aid developed for early breast cancer patients with resource and educational constraints

Abstract Background: Women with early breast cancer routinely face a choice between breast conservation therapy and mastectomy, and assume agency through shared decision making. However, for women with lower socioeconomic power or education, barriers such as access to understandable information, involvement of family in decision making, and a decreased sense of autonomy inhibits this agency. To better empower this population, a simple to understand, online, self-administered, conjoint analysis based decision aid called “Navya Patient Preference Tool” (PPT) is developed to be used outside the physician encounter. PPT is unique in its incorporation of several psychological scales that assess potential confounders of participation in shared decision making. Methodology: This is a pre-planned analysis of the reliability and validity of the psychological scales used in all three arms of an IRB approved randomized controlled trial to assess PPT. Women with operable node negative breast cancer eligible for BCT or MRM at one of Asia's largest academic tertiary cancer centers were eligible. PPT trial consists of an initial conjoint analysis questionnaire analyzing implicit preferences for breast conservation given to the intervention arms. The following psychological scales were given to all patients regardless of randomization: Autonomy Preference Index (API), Traditional-Egalitarian Gender Roles (TEGR), Caregiving Role, Brief Resiliency Scale (BRS), Appearances Scale, and Decisional Conflict Scale (DCS). Cronbach's alpha as a measure of internal reliability for all scales, and correlations of scores with known demographic trends as a measure of external validity are calculated. Results: Of the 102 patients enrolled, 30 completed PPT in English, 39 in Hindi, and 33 in Marathi, (vernaculars). 69/102 were in middle and lower socioeconomic groups (Kuppuswamy Index). 53/102 had completed less than high school education. Internal reliability of all scales were high, with Cronbach's alpha above 0.7: API 0.74, TEGR 0.78, Caregiving 0.7, BRS 0.7, Appearance 0.84. DCS was highly reliable at 0.91, and is the primary outcome measure for the RCT. Correlations in the dataset met those expected in real world data, suggesting external validity. For e.g., education was inversely correlated with traditional gender roles on TEGR (R -0.4, p &amp;lt;0.01), and positively correlated with resilience on BRS (R 0.228, p &amp;lt;0.05). Individual scale items that are unrealistic were not chosen by any of the 102 respondents (e.g.,. My doctor should not participate in my medical decisions), substantiating nuanced reading. 85% of patients “Strongly Agreed” on a 1-5 Likert scale that “The survey questions were easy to understand” (mean score 1.18/5. SD 0.4). Conclusions: Women with limited education and low socioeconomic status complete the online, self administered PPT outside of a physician encounter, with high internal reliability and external validity. Decision Aids such as Navya PPT, which account for psychosocial confounders of agency, have the potential to benefit women otherwise marginalized from shared decision making. Citation Format: Joshi S, Ramarajan L, Ramarajan N, Srivastava G, Begum F, Deshpande O, Tondare A, Nair N, Parmar V, Gupta S, Badwe RA. Accuracy of psychosocial assessments in an online surgical decision aid developed for early breast cancer patients with resource and educational constraints [abstract]. In: Proceedings of the 2018 San Antonio Breast Cancer Symposium; 2018 Dec 4-8; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2019;79(4 Suppl):Abstract nr P5-14-07.

The impact of patient autonomy on older adults with asthma

BackgroundUnderstanding patient preferences and desire for involvement in making medical decisions is important when managing chronic conditions. Previous studies have used the Autonomy Preference Index (API) in younger patients with asthma to evaluate these preferences. ObjectiveTo identify factors associated with autonomy and to determine whether autonomy is related to asthma outcomes among older adults. MethodsA total of 189 older adults (>55 years old) with persistent asthma were included. Preferences for autonomy were assessed using the API, with a higher score indicating higher desire for autonomy. Scores were separated into 2 domains of information-seeking and decision-making preferences. The separated scores were correlated with asthma outcomes and demographic variables. To control for confounding factors, a linear regression analysis was performed. ResultsHigher decision-making preference scores correlated with female sex (P = .007), higher educational level (P = .01), and lower depression scores (P = .04). Regarding outcomes, decision-making scores positively correlated with Mini Asthma Quality of Life Questionnaire (Mini-AQLQ) scores (P = .01). On linear regression analysis, the Mini-AQLQ score remained significantly associated with decision-making preference scores (P = .03). There was no association with asthma control test scores, spirometry values, and health care use. Information-seeking preference scores correlated with educational level (P = .03), but there was no correlation with asthma outcomes. ConclusionOlder adults with asthma and a greater desire for involvement in decision making have better asthma-related quality of life. Future studies with the intention to increase patient autonomy may help establish a causal relationship.

Autonomy Preference Index and advance care planning preference of patients with incurable cancer and their association with anxiety and depression.

54 Background: Shared decision-making and informed patient choices are promoted in many countries. However, advances in antitumoral treatments are making decisions and communication more complex and the benefit of early discussions on end-of-life care is still unclear, especially in most distressed patients. Using a validated French version of the Autonomy Preference Index (API), we studied the factors associated with the level of preference for participation in medical decision-making (DM), information seeking (IS) and advanced care planning (ACP) in patients with incurable cancer. Methods: The API is a self-administered scale that measures both dimensions of DM and IS on a 0 - 100 scale (100 for maximum participation and desire for information). DM is also assessed against the illness severity, using 3 clinical vignettes of specific diseases of increasing severity, each on a 0 - 10 scale. We designed another clinical vignette, questioning patient’s preference for discussion on “Do Not Resuscitate” order (ACP). 187 consecutive patients visiting the general oncology clinic of a university hospital completed the questionnaire, as well as the anxiety and depression HADS 14-points scales. Results: Patients were aged 65±12, 46% male, 39% with high school level of education. Lung (25%), colorectal (14%), pancreas (12%) ovarian (12%) were the most frequent types of cancer. 175 (95%) patients were receiving chemotherapy, 60 (33%) had anxiety, and 49 (26%) depression. Median (1st-3rdquartiles) of IS and DM were 45.8 (33.3-58.3), 85.4 (78.1-96.9) respectively. According to the ACP vignette, 177 (95%) patients considered important to discuss such decision with their doctor, 130 (71%) considered it possible, and 127 (68%) preferred to decide together with physician, or him/herself after taking physician’s advice. Female, most educated patients had higher DM score. We find no significant correlation between IS or DM scores and HADS. Conclusions: Incurable cancer patients have high expectations of medical information but intermediate or low level of preference for participation in decision making. However, they value the discussion on ACP to express their informed choice.

Attitudes of Patients With Cancer Towards Truth-telling and Self-Determination in Kerman, 2016: A Cross Sectional Study

Background: Regarding the patient autonomy principle, patients have the right to make informed decisions about their medical care. In situations like cancer diagnosis, telling the truth is still a challenge for health care providers, especially in eastern countries. Methods: The present cross sectional study was conducted from March to June 2016, in which the convenience sampling method was used. The questionnaire used to collect data consisted of 3 parts. The first part included demographic characteristics; the second part consisted of 22 items that examined the patients' attitudes towards truth-telling; third part of the questionnaire was Ende (1989) autonomy preference index (API). Results: The overall scores showed that the participants had a positive tendency to truth-telling and self-determination. The majority of participants believed that knowing the truth might make them more cooperative during treatment period, prevent unnecessary treatments, and help them deal better with their difficulties. Participants reported their preferences for decision making as low and seeking information as high. They preferred that leave decisions be made by doctors. However, they reported a positive attitude towards information seeking. Conclusions: The results of this study showed that Iranian patients with cancer had highly positive attitudes towards truth-telling and self-determination. Patients expect that their physician play the main decision maker role. Moreover, the preference for self-decision making is high, correlated with education level.

Factorial structure and long-term stability of the Autonomy Preference Index.

The autonomy preference index scale (API) has been designed to measure patient preference for 2 dimensions of autonomy: Their desire to take part in making medical decisions (decision making, [DM]) and their desire to be informed about their illness and the treatment (information seeking; [IS]). The DM dimension is measured by 6 general items together with 9 items related to 3 clinical vignettes (3 × 3 items). The IS dimension is measured by 8 items. While the API is widely used, a review of literature has identified several inconsistencies in the way it is scored. The first aim of this study was to determine the best scoring structure of the API on the basis of validity and reliability evidence. The second aim was to investigate the long-term stability of API scores. Two-hundred and 85 patients with a diagnosis of psychosis were assessed as they were about to be discharged from involuntary psychiatric hospitalization and they were reassessed after 6 and 12 months. Confirmatory factor analysis (CFA) revealed that a 3-factor solution was most adequate and that 2 distinct DM subscales should be preferred to 1 total DM score. While internal consistency estimates of the 3 subscales were good, the long-term stability of API scores was only modest. Multigroup-CFA revealed scalar invariance indicating API scores kept the same meaning longitudinally. In conclusion, a 3-factor structure seemed to be most adequate for the API scale. Long-term stability estimates suggested that clinicians should regularly assess patients' preferences for autonomy because API scores fluctuate over time. (PsycINFO Database Record

Examining chronic care patient preferences for involvement in health-care decision making: the case of Parkinson's disease patients in a patient-centred clinic.

BackgroundPatient‐centred care is a recommended model of care for Parkinson's disease (PD). It aims to provide care that is respectful and responsive to patient preferences, values and perspectives. Provision of patient‐centred care should entail considering how patients want to be involved in their care.ObjectiveTo understand the participation preferences of patients with PD from a patient‐centred care clinic in health‐care decision‐making processes.Design, setting and participants:Mixed‐methods study with early‐stage Parkinson's disease patients from a patient‐centred care clinic. Study involved a modified Autonomy Preference Index survey (N=65) and qualitative, semi‐structured in‐depth interviews, analysed using thematic qualitative content analysis (N=20, purposefully selected from survey participants). Interviews examined (i) the patient preferences for involvement in health‐care decision making; (ii) patient perspectives on the patient–physician relationship; and (iii) patient preferences for communication of information relevant to decision making.ResultsPreferences for participation in decision making varied between individuals and also within individuals depending on decision type, relational and contextual factors. Patients had high preferences for communication of information, but with acknowledged limits. The importance of communication in the patient–physician relationship was emphasized.DiscussionPatient preferences for involvement in decision making are dynamic and support shared decision making. Relational autonomy corresponds to how patients envision their participation in decision making. Clinicians may need to assess patient preferences on an on‐going basis.ConclusionOur results highlight the complexities of decision‐making processes. Improved understanding of individual preferences could enhance respect for persons and make for patient‐centred care that is truly respectful of individual patients’ wants, needs and values.

Supplemental Material for Factorial Structure and Long-Term Stability of the Autonomy Preference Index

Supplemental Material for Factorial Structure and Long-Term Stability of the Autonomy Preference Index

Healthcare decision-making in end stage renal disease-patient preferences and clinical correlates.

BackgroundMedical decision-making is critical to patient survival and well-being. Patients with end stage renal disease (ESRD) are faced with incrementally complex decision-making throughout their treatment journey. The extent to which patients seek involvement in the decision-making process and factors which influence these in ESRD need to be understood.Methods535 ESRD patients were enrolled into the cross-sectional study arm and 30 patients who started dialysis were prospectively evaluated. Patients were enrolled into 3 groups- ‘predialysis’ (group A), ‘in-centre’ haemodialysis (HD) (group B) and self-care HD (93 % at home-group C) from across five tertiary UK renal centres. The Autonomy Preference Index (API) has been employed to study patient preferences for information-seeking (IS) and decision-making (DM). Demographic, psychosocial and neuropsychometric assessments are considered for analyses.Results458 complete responses were available. API items have high internal consistency in the study population (Cronbach’s alpha > 0.70). Overall and across individual study groups, the scores for information-seeking and decision-making are significantly different indicating that although patients had a strong preference to be well informed, they were more neutral in their preference to participate in DM (p < 0.05). In the age, education and study group adjusted multiple linear regression analysis, lower age, female gender, marital status; higher API IS scores and white ethnicity background were significant predictors of preference for decision-making. DM scores were subdivided into tertiles to identify variables associated with high (DM > 70: and low DM (≤30) scores. This shows association of higher DM scores with lower age, lower comorbidity index score, higher executive brain function, belonging in the self-caring cohort and being unemployed. In the prospectively studied cohort of predialysis patients, there was no change in decision-making preference scores after commencement of dialysis.ConclusionESRD patients prefer to receive information, but this does not always imply active involvement in decision-making. By understanding modifiable and non-modifiable factors which affect patient preferences for involvement in healthcare decision-making, health professionals may acknowledge the need to accommodate individual patient preferences to the extent determined by the individual patient factors.Electronic supplementary materialThe online version of this article (doi:10.1186/s12882-015-0180-8) contains supplementary material, which is available to authorized users.

Understanding the information needs of women with rheumatoid arthritis concerning pregnancy, post-natal care and early parenting: A mixed-methods study.

BackgroundAlthough women with rheumatoid arthritis (RA) face a number of challenges in negotiating the journey to parenthood, no studies have explored the information needs of women with RA in relation to their childbearing years. This study aimed to determine the need for (and preferred mode/s of delivery of) information regarding pregnancy, post-natal care and early parenting among women with RA.MethodsInterviews and focus groups were conducted with 27 women with RA who were pregnant in the last 5 years, currently pregnant or planning pregnancy. Verbatim transcripts were analysed using both inductive and deductive approaches. Two validated instruments were used to quantify information needs and preferences: the Educational Needs Assessment Tool (ENAT, range 0-156, higher scores indicate higher educational needs) and the Autonomy Preference Index (API, range 0-100, higher scores indicate stronger preferences).ResultsLack of information about medication safety, access to physical/emotional support services and practical strategies for coping with daily challenges related to parenting were the most prominent of the six key themes identified. Rheumatologists were the primary source for information regarding treatment decisions while arthritis consumer organisations were perceived as critical ‘resource hubs’. There was strong preference for information delivered electronically, especially among rural participants. Quantitative outcomes supported the qualitative findings; on average, participants reported high educational needs (mean ENAT score 97.2, SD 30.8) and API scores indicated that desire for information (mean 89.8, SD 5.6) was greater than the need for involvement in treatment decision-making (mean 68.4, SD 8.2).ConclusionsMany women with RA struggle to find adequate information on pregnancy planning, pregnancy and early parenting in relation to their chronic condition, and there is a clear need to develop accessible information that is consumer-focused and evidence-based. Although most participants trusted their rheumatologist as their primary information source, there was consistent demand for more information, particularly regarding the safety of RA medications during pregnancy and breastfeeding, and the importance of learning from other women’s personal experiences was strongly emphasised.Electronic supplementary materialThe online version of this article (doi:10.1186/s12891-015-0657-4) contains supplementary material, which is available to authorized users.