Patient Participation In Treatment Decisions Research Articles

Enhancing patient-clinician collaboration during treatment decision-making: study protocol for a community-engaged, mixed method hybrid type 1 trial of collaborative decision skills training (CDST) for veterans with psychosis

BackgroundPatient participation in treatment decision making is a pillar of recovery-oriented care and is associated with improvements in empowerment and well-being. Although demand for increased involvement in treatment decision-making is high among veterans with serious mental illness, rates of involvement are low. Collaborative decision skills training (CDST) is a recovery-oriented, skills-based intervention designed to support meaningful patient participation in treatment decision making. An open trial among veterans with psychosis supported CDST’s feasibility and demonstrated preliminary indications of effectiveness. A randomized control trial (RCT) is needed to test CDST’s effectiveness in comparison with an active control and further evaluate implementation feasibility.MethodsThe planned RCT is a hybrid type 1 trial, which will use mixed methods to systematically evaluate the effectiveness and implementation feasibility of CDST among veterans participating in a VA Psychosocial Rehabilitation and Recovery Center (PRRC) in Southern California. The first aim is to assess the effectiveness of CDST in comparison with the active control via the primary outcome, collaborative decision-making behavior during usual care appointments between veterans and their VA mental health clinicians, and secondary outcomes (i.e., treatment engagement, satisfaction, and outcome). The second aim is to characterize the implementation feasibility of CDST within the VA PRRC using the Practical Robust Implementation and Sustainability Model framework, including barriers and facilitators within the PRRC context to support future implementation.DiscussionIf CDST is found to be effective and feasible, implementation determinants gathered throughout the study can be used to ensure sustained and successful implementation at this PRRC and other PRRCs and similar settings nationally.Trial registrationClinicalTrials.gov NCT04324944. Registered on March 27, 2020. Trial registration data can be found in Appendix 1.

Patients’ Participation in Surgical Treatment Decision Making in General Government Hospital of Bharatpur

Background: Patient participation means involvement of the patient in decision making or expressing their opinions about different treatment methods, which includes sharing information, feelings and signs and accepting and rejecting health team instructions. The study aims to find out the level of patient participation in surgical treatment decision making of admitted patient in general government hospital of Chitwan.Methods: A descriptive cross –sectional research was carried out to assess the level of participation in surgical treatment decision making. Non-probability, purposive sampling technique was used. A set of valid instruments containing 16 item was used to assess the level of participation. Ethical clearance was taken from Institutional review Committee of Shree Medical and Technical College (SMTC-IRC 20221206-43). Data were collected and analyzed in statistical package for the social science version. Results: The result of the study shows that maximum respondents 51.8% belonged to age group less or equals to 40 years. Among 226 respondents 58.4% were female and 41.6% were male. Among them, more than half (62.8%) of the respondent had high level of participation and (37.2%) of the respondents had low level of participation.Conclusions: The findings of the study indicate the participation of patient in surgical treatment decision making. These findings may help hospital and concerned authorities to make appropriate policy and take corrective action to increase the level of patient participation in treatment decision making.

Individualized Treatment Patterns for Patients with Narcolepsy Treated with Oxybate: A Clinical Practice Perspective.

Real-world data regarding divided nightly dosing of oxybate and individualized prescribing in patients with narcolepsy are limited. Study objectives were to understand oxybate prescribing practices, including optimizing dose regimens and adjusting dosing per occasional changes in patients' routines, and physician recommendations for representative patient scenarios. A cross-sectional, web- and audio-based survey of physicians treating ≥2 patients with narcolepsy, prescribed nightly oxybate (sodium oxybate) dosing for ≥6 months, was conducted. Physicians were surveyed on patients' usual oxybate dosing regimens, frequency of and reasons for oxybate dosing-related discussions, and preferred methods for and perceptions of adjusting oxybate dosing. Physicians provided dosing-related guidance for 4 representative scenarios. Participating physicians (N=25) were neurologists (52%), psychiatrists (44%), and neuropsychiatrists (4%). Individualized oxybate prescribing practices were reflected by the variability of physicians' reporting of the percentage of their patients being prescribed once-nightly, twice-nightly, and thrice-nightly dosing regimens. Most physicians (68%) reported discussing adjusting individualized treatment to accommodate occasional changes to patients' routines; the most common reasons were consuming contraindicated beverages (alcohol; 65%) and travel (59%). Adjusting total nightly dose (68%) and dose timing (68%) were preferred adjustment methods. Most physicians (88%) felt the ability to individualize oxybate dosing was important and had a positive impact on ability to provide care. For each representative scenario, physicians provided several dose-adjustment recommendations, and physician responses encouraged patient participation in treatment decision-making. Physicians provided guidance supportive of oxybate dose adjustments to accommodate occasional changes in patients' routines, and perceived individualized dosing as important in providing care.

Treatment preferences among adults with normal cognition and cognitive impairment.

Although patient participation in treatment decisions is important for preference-concordant care delivery, it is largely unknown how cognitive impairment influences treatment preferences. We investigated whether treatment preferences for the care of serious illness differ between adults with and without cognitive impairment in hypothetical clinical scenarios. Data from the 2018 Health and Retirement Study were used. The sample included 1291 self-respondents (201 respondents with cognitive impairment, and 1090 with normal cognition). We examined treatment preferences for life-extending, limited, and comfort care options in two hypothetical clinical scenarios where the respondent imagines a patient with (1) good physical health with severe cognitive impairment consistent with dementia; and (2) with physical impairment due to a heart attack, but normal cognition. Respondents specified whether they were unsure, or if they would want or not want each treatment option. Linear probability models were used to compare treatment preferences by cognitive status. Respondents with cognitive impairment were more likely to report that they were unsure about treatment options across both clinical scenarios compared to those with normal cognition. For the limited treatment option, cognitive impairment was associated with a lower rate of expressing a treatment preference by 7.3 (p=0.070) and 8.5 (p=0.035) percentage points for dementia and heart attack scenarios, respectively. Among those who articulated preferences, cognitive impairment was associated with a higher rate of preference for life-extending treatment in both dementia (30.1% vs. 20.0%, p=0.044) and heart attack scenarios (30.0% vs. 20.2%, p=0.033). Compared to those with normal cognition, cognitive impairment was associated with greater uncertainty about treatment preferences and higher rates of aggressive care preferences among those who specified preferences. Further research should assess whether preferences for aggressive care become more common as cognition declines in order to improve preference-concordant care delivery for patients with cognitive impairment.

Barriers to accessing treatment for substance use after inpatient managed withdrawal (Detox): A qualitative study

IntroductionAccess to and uptake of evidence-based treatment for substance use disorder, specifically opioid use disorder (OUD), are limited despite the high death toll from drug overdose in the United States in recent years. Patient perceived barriers to evidence-based treatment after completion of short-term inpatient medically managed withdrawal programs (detox) have not been well studied. The purpose of the current study is to elicit patients' perspectives on challenges to transition to treatment, including medications for OUD (MOUD), after detox and potential solutions. MethodsWe conducted semi-structured interviews (N = 24) at a detox center (2018–2019) to explore patients' perspectives on obstacles to treatment. The study managed the data in NVivo and we used content analysis to identify themes. ResultsPatients' characteristics included the following: 54 % male; mean age 37 years; self-identified as White 67 %, Black 13 %, Latinx 8 %, Native Hawaiian/Pacific Islander 4 %, and other 8 %; heroin use in the past 3 months 67 %; and ever injecting drugs 71 %. Patients identified the following barriers: 1) lack of continuity of care; 2) limited number of detox and residential treatment program beds; 3) unstable housing; and 4) lack of options when choosing a treatment pathway. Solutions proposed by participants included: 1) increase low-barrier access to community MOUD; 2) add case managers at the detox center to establish continuity of care after discharge; 3) increase assistance with housing; and 4) encourage patient participation in treatment decisions. ConclusionsPatients identified lack of continuity of care, especially care coordination, as a major barrier to substance use treatment. Increasing treatment utilization, including MOUD, necessitates a multimodal approach to continuity of care, low-barrier access to MOUD, and support to address unstable housing. Patients want care that incorporates options and respect for.individualized preferences and needs.

Patient participation in treatment decision-making of prostate cancer: a qualitative study.

Despite increasing development in decision-making strategies for patients with prostate cancer, little is known about patients' individual experience and perception throughout the decision-making process. The objective of this study was to explore patients' experiences and perceptions towards treatment decision-making. We conducted a qualitative interview study with 30 patients diagnosed with prostate cancer. We transcribed interviews verbatim and inductively identified codes. Thematic analysis was used to develop and refine a codebook that aided in the identification of themes. Three key themes and nine subthemes emerged, which were as follows: I. less involved in treatment decision-making, (i) passive decisional control, (ii) lack of medical knowledge, and (iii) domination by family members; II. the right to be informed of the disease condition and to choose treatment options, (i) sociocultural influences, (ii) patients believe that they should know the true facts of the disease, and (iii) patient autonomy during treatment; and III. future consideration and advance care planning, (i) fewer future concerns, (ii) advance care planning is poorly understood, and (iii) acceptance of advance care planning. The study results show that patients with prostate cancer have a diversity of needs to cultivate their ability to make treatment decisions, and healthcare professionals should empower patients, as well as provide decision aids or decision support for patients.

PCN164 Impact of Treatment and Patient Attributes on Oncologists Decision-Making in First-line Chronic Lymphocytic Leukemia (CLL) in the United States (US)

This study evaluated the impact of treatment and patient attributes on oncologists’ first-line CLL treatment decisions. This cross-sectional survey assessed board certified medical oncologists practicing and treating CLL patients in the US (October 2019 - January 2020). Survey included a ranking exercise of 13 treatment attributes pertaining to efficacy, adverse effects, and convenience selected from literature, on their relative importance in treatment decision-making. Four clinical vignettes with varying patient attributes (age, gender, IGHV mutation status, etc.) were presented to oncologists to understand their treatment selection process. Other items included demographics, clinical practice type, cytogenetic/mutation testing recommendations, and patient participation in treatment decisions. Results were descriptively analyzed. Fifty oncologists (oncology: 28%, hematology: 10%, both: 62%) completed the survey; most were males (86%), Caucasian (43%), community-based (60%)and treating 53 CLL patients on average with a mean experience of 14 years. Oncologists ranked overall survival, progression free survival, grade III/IV tumor lysis syndrome, grade III/IV atrial fibrillation, and administration route (oral vs intravenous) as the top-five most important treatment attributes. Most clinicians (84%) “often/always” recommended cytogenetic/mutation testing. Vignette responses showed that most oncologists (mean 61%) preferred oral targeted monotherapy as their treatment choice for IGHV mutated/unmutated CLL patients; for older patients this preference was more prominent (mean 67% among vignettes with age 75+). Furthermore, oncologists consistently cited efficacy among the top-two reasons for treatment selection. Most oncologists stated they “completely/somewhat” (84%) understood their patients’ treatment preferences/goals, and their patients had “complete/some” participation (92%) in treatment decision-making. Oncologists considered efficacy as the most important attribute and preferred oral targeted monotherapy for first-line CLL patients. In contrast to previously published real-world testing patterns in CLL, a higher proportion of clinicians recommended cytogenetic/mutation testing. This study is an important step in understanding how treatment and patient attributes impact clinician recommendations

A Randomized Controlled Trial Evaluating the Impact of Pre-Consultation Information on Patients' Perception of Information Conveyed and Satisfaction with the Decision-Making Process.

Patient participation in treatment decision-making is a health care priority. This study hypothesized that providing a decision aid before surgical consultation would better prepare patients for decision-making. The objective was to examine the impact of a decision aid versus high-quality websites on patients' perceptions of information conveyed during surgical consultation and satisfaction with the decision process. Patients with stages 0 to 3 breast cancer were randomized. Surveys assessed perceptions of information conveyed, being asked surgical preference, and satisfaction with the decision process. Multivariable logistic regression assessed associations between outcomes and randomization arm, patient factors, and surgeon. Change in Pseudo-R2 assessed the comparative effect of these factors on perceptions of the information conveyed. The median patient age was 59years. Most of the patients (98%) were white, and 62% were college educated (n = 201). The findings showed no association between randomization arm and perceptions of information conveyed, being asked surgical preference, or satisfaction with the decision process. Most of the patients reported discussing both breast-conserving therapy and mastectomy (69%) and being asked their surgical preference (65%). The surgeon seen was more important than the randomization arm or the patient factors in predicting patients' perceptions of information conveyed (explained 64-69% of the variation), and 63% of the patients were satisfied with the decision process. Use of a decision aid compared with high-quality websites did not increase patients' perceptions of information conveyed or satisfaction with the decision process. Although the surgeon seen influenced aspects of the patient experience, the surgeon was not associated with satisfaction. Understanding the factors driving low satisfaction is critical because this is increasingly used as a marker of health care quality.

Managing Chronic Pain in an Opioid Crisis: What Is the Role of Shared Decision-Making?

ABSTRACT Shared decision-making (SDM) is a widely-advocated practice that has been linked to improved patient adherence, satisfaction, and clinical outcomes. SDM is a process in which patients and providers share information, express opinions, and build consensus toward a treatment decision. Chronic pain and its treatment present unique challenges for SDM, especially in the current environment in which opioids are viewed as harmful and a national opioid crisis has been declared. The purpose of this qualitative study is to understand treatment decision-making with patients taking opioids for chronic pain. Ninety-five clinic visits and 31 interviews with patients and primary care providers (PCPs) were analyzed using the constant comparison method. Results revealed that 1) PCPs desire patient participation in treatment decisions, but with caveats where opioids are concerned; 2) Disagreements about opioids, including perceptions of lack of listening, presented challenges to SDM; and 3) PCPs described engaging in persuasion or negotiation to convince patients to try alternatives to opioids, or appeasing patients requesting opioids with very small amounts in an effort to maintain the patient-provider relationship. Results are discussed through the lens of Charles, Gafni, and Whelan’s SDM model, and implications of the role of the patient-provider relationship in SDM and chronic pain treatment are discussed.

Shared Decision-Making in Growth Hormone Therapy-Implications for Patient Care.

Several studies have shown that adherence to growth hormone therapy (GHT) is not optimal. There are several reasons why patients may not fully adhere to their treatment regimen and this may have implications on treatment success, patient outcomes and healthcare spending and resourcing. A change in healthcare practices, from a physician paternalistic to a more patient autonomous approach to healthcare, has encouraged a greater onus on a shared decision-making (SDM) process whereby patients are actively encouraged to participate in their own healthcare decisions. There is growing evidence to suggest that SDM may facilitate patient adherence to GHT. Improved adherence to therapy in this way may consequently positively impact treatment outcomes for patients. Whilst SDM is widely regarded as a healthcare imperative, there is little guidance on how it should be best implemented. Despite this, there are many opportunities for the implementation of SDM during the treatment journey of a patient with a GH-related disorder. Barriers to the successful practice of SDM within the clinic may include poor patient education surrounding their condition and treatment options, limited healthcare professional time, lack of support from clinics to use SDM, and healthcare resourcing restrictions. Here we discuss the opportunities for the implementation of SDM and the barriers that challenge its effective use within the clinic. We also review some of the potential solutions to overcome these challenges that may prove key to effective patient participation in treatment decisions. Encouraging a sense of empowerment for patients will ultimately enhance treatment adherence and improve clinical outcomes in GHT.

Health system responsiveness: A comparison between public and private hospitals in Iran

ABSTRACT Introduction Responsiveness refers to the fulfilment of patient’s rational expectations in terms of non-medical healthcare aspects. This study aimed to assess and compare the responsiveness levels of private and public hospitals in Tehran from the patients’ perspective. Methods In this cross-sectional study, 500 discharged patients from two public and three private hospitals were selected randomly. Data collected using A 32-item questionnaire developed by the World Health Organization, and its validity and reliability were confirmed. For data analysis, descriptive statistics, T-test and regression tests were used through SPSS 19. Results The responsiveness’ mean score was 3.3 ± 0.6 and 3.8 ± 0.6 out of 5 for public and private hospitals, respectively. The difference between responsiveness score and its eight dimensions in public and private hospitals was significant (P < 0.001); the responsiveness score of private hospitals was higher. The highest and lowest difference in mean scores of responsiveness was pertinent to the provider choice and prompt attention. Conclusion The responsiveness of private hospitals was better than that of public hospitals. Patient participation in treatment decision-making, improvement of the patients’ right to provider choice and reducing waiting time by re-organising human resources, computerised appointment system and re-engineering patients’ admission process can lead to higher responsiveness.

Jordanian physicians' perceived barriers and facilitators to patient participation in treatment decision-making: An exploratory study.

Successful implementation of shared decision-making in clinical encounters is influenced by system, patient, and clinician factors that both facilitate and present barriers to patient-centered care. Little is known about which factors Jordanian physicians believe influence their ability to implement shared decision-making with cancer patients. To determine Jordanian physicians' perceived barriers and facilitators to patient participation in treatment decision-making. A cross-sectional exploratory survey design was used in the study. A convenience sample of 86 Jordanian medical and radiation oncologists and surgeons was recruited. A valid measure of physicians' views of shared decision-making was slightly modified from its original English and used to collect data. Data were analyzed using the Statistical Package for the Social Sciences (SPSS) for windows version 19.0 (SPSS, Inc., Chicago, IL, USA). Descriptive and inferential statistics were carried as appropriate. Insufficient time to spend with the patient, patient expecting a certain treatment rather than a consultation, and the patient's family overriding the decision-making process were the most frequently reported barriers to patient participation in treatment decision-making. Physicians believed that patients trust in physicians and patient being accompanied at the consultation were important facilitators of patient participation in treatment decision-making. Jordanian physicians perceive multiple barriers to patient participation in treatment decision-making. Patient-related difficulties (e.g., indecision), and system-related difficulties, in particular, patient's family influence on the decision-making process are more prevalent among Jordanian physicians compared to Western physicians.

Perspectives from the Patient and the Healthcare Professional in Multiple Sclerosis: Social Media and Participatory Medicine.

When faced with a diagnosis of multiple sclerosis (MS), patients often turn to the Internet and social media to find support groups, read about the experiences of other people affected by MS and seek their advice, and research their condition and treatment options to discuss with their healthcare professionals (HCPs). Here, we examine the use of social media and the Internet among patients with MS, considering its impact on patient empowerment and patient participation in treatment decision-making and MS research. These themes are exemplified with first-hand experiences of the patient author. We also explore the impact of the Internet and social media on the management of patients from the perspective of HCPs, including new opportunities for HCPs to engage in participatory medicine and to improve communication with and among patients. We consider both the benefits afforded to and the potential pitfalls faced by HCPs when interacting with their patients via these routes, and discuss potential concerns around privacy and confidentiality in the use of the Internet and social media in the clinical context. Communication online is driving the evolution of the patient–HCP relationship, and is empowering patients to participate more actively in the decision-making process relating to the provision of their health care. Funding Novartis Pharmaceuticals Corporation.

Participation rate of cancer patients in treatment decisions: a cross sectional study

Background and objective: Cancer is one of the most common diseases and the second reason of death in Iran. Giving decision making authority to patients is one of the fundamental principles of the protection of patients. Patients have rights as consumers of health care services that nurses, physician and other health professionals are responsible for maintaining and protecting it. This study aimed to determine cancer patients’ involvement in treatment decisions making. Methods:This cross-sectional study was carried out as descriptive-analytic with practical purpose in 2017 in Zahedan University of Medical Sciences. The study population included 1,000 patients who had cancer that whom 450 patients were selected by simple random sampling. To measure patient participation in treatment decisions, was used of Levente Kristona standard questionnaire. Reliability and validity of the questionnaire was confirmed (coefficient = 0.82). For data analysis used of software spss21 with descriptive statistics and chi-square tests Results: among the patients, 197 men (53%) and 177 women (47%) with a mean age of 31 years were examined. The results of this study showed that the score of mean participation in treatment decisions among the cancer patients was 30 ± 12 and it was in low level. The patients’ participation in treatment decisions had a significant relationship with education level (P = 0.027), however, it was not statistical significant with gender, age, income, occupation and type of cancer and other demographic variables (P> 0.05). Conclusion: In general, that patients' participation in clinical decision making is weak and low. Since patients’ participation in clinical decisions could affect the quality of treatment decisions, therefore, health care providers should attention more to this fact. Also, culturalizating and education according to patients’ knowledge and use of treatment techniques are recommended for clinical decision making promotion. Paper Type:Research Article.

Prostate cancer survivors with a passive role preference in treatment decision-making are less satisfied with information received: Results from the PROFILES registry

ObjectiveTo investigate decision-making role preferences and their association with the evaluation of information received in a sample of low-risk and intermediate-risk prostate cancer (Pca) survivors. MethodsCross-sectional study involved 562 men diagnosed with low-risk or intermediate-risk Pca (median time since diagnosis, 48mo), measuring preferred decision-making role (Control Preference Scale) and the evaluation of information received (EORTC QLQ-INFO25). Analyses were performed using analysis of variance, chi-square tests, and multivariable linear regression models. ResultsMen who preferred a passive role were older and less educated than other preference groups and more often selected a noninvasive treatment option (all with P<0.001). The passive role preference group reported having received less information, judged the received information as less helpful, and indicated lower overall satisfaction with information received (all with P<0.05). Role preference groups did not differ in their desire to receive more information. ConclusionCompared with nonpassive preference groups, the preference for a passive role in Pca treatment decision-making is associated with less satisfaction with the information received. Practice implicationsAssessment of role preferences and tailored information provision could improve satisfaction with information received and perhaps may ultimately lead to improved patient participation in treatment decision-making.

Jordanian physicians' attitudes toward disclosure of cancer information and patient participation in treatment decision-making

Objective:This study aims to determine the attitude of Jordanian physicians toward disclosure of cancer information, comfort and use of different decision-making approaches, and treatment decision making.Methods:A descriptive, comparative research design was used. A convenience sample of 86 Jordanian medical and radiation oncologists and surgeons practicing mainly in oncology was recruited. A modified version of a structured questionnaire was used for data collection. The questionnaire is a valid measure of physicians’ views of shared decision making.Results:Almost 91% of all physicians indicated that the doctor should tell the patient and let him/her decide if the family should know of an early-stage cancer diagnosis. Physicians provide abundant information about the extent of the disease, the side effects and benefits of the treatment, and details of the treatment procedures. They also provided less information on the effects of treatment on the sexuality, mood, and family of the patient. Almost 48% of the participating physicians reported using shared decision making as their usual approach for treatment decision making, and 67% reported that they were comfortable with this approach. The main setting of clinical activity was the only factor associated with physicians’ usual approach to medical decision making. Moreover, age, years of experience, and main setting of clinical activity were associated with physicians’ comfort level with the shared approach.Conclusions:Although Jordanian physicians appreciate patient autonomy, self-determination, and right to information, paternalistic decision making and underuse of the shared decision-making approach persist. Strategies that target both healthcare providers and patients must be employed to promote shared decision making in the Jordanian healthcare system.

Client participation in care of disabled in victims of traffic accidents: a conceptual analysis

Background: Patient participation in nursing has great application and values the humanarian values of patients. Patient participation is an international golden standard in the modern nursing paradigm. Despite the importance of patient participation and its routine use in professional care, this concept is not clear, especially in social and cultural context of Iranian nursing. This study clarifies the meaning of patient participation and determines its critical attributes for victims of traffic accidents. Material and Methods: In this study the concept of patient participation was analyzed by using hybrid method in three stages as follows: (1) review of the literature, 103 related articles, available from the Google Scholar, PubMed, Yahoo, and Google databases until 2013 analyzed to identify relevant articles with keywords such as “participation in care”, “nursing”, “patient participation”, “victims of traffic accidents”; (2) the field stage, qualitative content analysis was used by interviewing 7 victims of traffic accidents and 3 in field nurses; and (3) in the final stage, an overall analysis done for the previous two stages. Findings: Based on a review of the results of three stages four themes emerged from the concept analysis of participation by victims of traffic accidents as follows: “Promoting a sense of responsibility”“, Active engagement to return to normal, “providing the field”, and “patient empowerment to improve health”. The concept of traffic accident victims participation is a dynamic process that changes over time and can complement the work of nursing and care providers through facilitating, participation, understanding, and dedicated work. Conclusion: Factors affecting patient participation in treatment decisionmaking are organizational. Knowledge of the patient, and patient willingness to participate in health care that the patient desires are the most important factors in determining participation. In the meantime, this concept is a new and complex one within the context of our nursing, which requires further study of social and cultural context of health care.

HEALTH RELATED QUALITY OF LIFE AMONG PATIENTS WITH BRAIN TUMORS

Background: Brain tumors are often deadly, impact quality of life, and change everything for patients and their loved ones.. Therefore, measuring quality of life in those patient is important especially as Patients with primary brain tumors face serious challenges to their QOL. The aim of the present study was to assess health related quality of life among patients with brain tumor. Methods: Descriptive study design was used. It was conducted at outpatient clinic of neurology at Mansoura University Hospital, Egypt Sociodemographic sheet was developed and tested by the researcher after extensive review of related literature, it was written in simple Arabic language and covered patient's age, sex, marital status, level of education, occupation, residence and income, past and present history; It was comprised of questions about past and present medical history, previous hospitalization, previous surgery, family health history ,Tool II, The Functional Assessment of Cancer Therapy-General (FACT-G) Scale , it was used to assess patient's own quality of life. Results: The studied subjects age was ranged between 19-60 years , the majority of subjects were female a about 92% of subjects have no previous cancer , Conclusion: regular assess HRQOL in neuro-oncology practice may improve quality of care by facilitating doctor- patient communication and patient participation in treatment decisions at every stage of the disease. Recommendation: The pattern of HRQOL assessment may serve as an easy and cost-effective tool to recognize early changes in the subjective clinical condition of brain tumor patients, and the relationship with disease progression and helpful in evaluating cancer care outcomes and also have been recently evaluated as early independent predictors of survival

Communicating cancer treatment information using the Web: utilizing the patient's perspective in website development.

BackgroundOnline cancer information can support patients in making treatment decisions. However, such information may not be adequately tailored to the patient’s perspective, particularly if healthcare professionals do not sufficiently engage patient groups when developing online information. We applied qualitative user testing during the development of a patient information website on stereotactic ablative radiotherapy (SABR), a new guideline-recommended curative treatment for early-stage lung cancer.MethodsWe recruited 27 participants who included patients referred for SABR and their relatives. A qualitative user test of the website was performed in 18 subjects, followed by an additional evaluation by users after website redesign (N = 9). We primarily used the ‘thinking aloud’ approach and semi-structured interviewing. Qualitative data analysis was performed to assess the main findings reported by the participants.ResultsStudy participants preferred receiving different information that had been provided initially. Problems identified with the online information related to comprehending medical terminology, understanding the scientific evidence regarding SABR, and appreciating the side-effects associated with SABR. Following redesign of the website, participants reported fewer problems with understanding content, and some additional recommendations for better online information were identified.ConclusionsOur findings indicate that input from patients and their relatives allows for a more comprehensive and usable website for providing treatment information. Such a website can facilitate improved patient participation in treatment decision-making for cancer.

Informed Consent and Shared Decision Making (SDM): Is Patient Participation in Treatment Decisions Regarding Palliative Care a Realistic Methodology?

Informed Consent and Shared Decision Making (SDM): Is Patient Participation in Treatment Decisions Regarding Palliative Care a Realistic Methodology?