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PURPOSE: To improve the quality of care for patients with breast cancer, an analysis of the health-care pathway, considering feedback from both health-care practitioners (HCPs) and patients, is needed. METHODS: Between 2020 and 2022, we conducted a survey at French breast cancer centers and analyzed information from questionnaires completed by HCPs and patients. We collected information on center organization, diagnostic processes, treatment decisions and modalities, supportive care, patient advocacy groups, and work issues. RESULTS: Twenty-three breast cancer centers were included and questionnaires completed by 247 HCPs and 249 patients were analyzed. The centers closely followed the legal French framework for cancer treatments, which includes formal diagnostic announcements, multidisciplinary tumor boards, personalized treatment summaries, and supportive care access. HCPs and patients were satisfied with the time to diagnosis (≤ 2 weeks as evaluated by 75% of patients), time to surgery (mean 61 days), time between surgery and chemotherapy (mean 47 days), and time between surgery and radiotherapy (mean 81 days). Fertility preservation counseling for women under 40 years of age was systematically offered by 67% of the HCPs. The majority (67%) of the patients indicated that they had received a personalized treatment summary; the topics discussed included treatments (92%), tumor characteristics (84%), care pathways (79%), supportive care (52%), and breast reconstruction (33%). Among HCPs, 44% stated that reconstructive surgery was offered to all eligible patients and 57% and 45% indicated coordination between centers and primary care physicians for adverse effects management and access to supportive care should be improved, for chemotherapy and radiotherapy, respectively. Regarding patient advocacy groups, 34% of HCPs did not know whether patients had contact and only 23% of patients declared that they had such contact. For one-third of working patients, work issues were not discussed. Twenty-eight percent of patients claimed that they had faced difficulties for supportive care access. Among HCPs, 13% stated that a formal personalized survivorship treatment program was administered to almost all patients and 37% almost never introduced the program to their patients. Compliance to oral treatments was considered very good for 75-100% of patients by 62% of HCPs. CONCLUSIONS: This study provides an updated analysis of breast cancer care pathways in France. Overall, the initial processes of diagnosis, announcement, and treatment were swift and were in agreement with the best care standards. No barriers to accessing care were identified. Based on the study findings, we proposed several strategies to improve the quality of care for patients in supportive care, coordination with primary care physicians, reconstructive surgery, and fertility preservation access.
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Breast Neoplasms , Humans , Female , Breast Neoplasms/therapy , Breast Neoplasms/pathology , France , Adult , Middle Aged , Surveys and Questionnaires , Caregivers/psychology , Patient Satisfaction , Aged , Quality of Health CareABSTRACT
PURPOSE/OBJECTIVE: To date there has been limited research looking at patient views on the implementation of artificial intelligence (AI) in radiotherapy. The aim of this study is to adapt and utilise a validated patient questionnaire to develop an understanding of current patient views on the use of AI in radiotherapy. MATERIALS/METHODS: An existing questionnaire, developed to assess understanding of patients' views on the implementation of AI in radiology, was adapted to the field of radiotherapy. The questionnaire was distributed to cancer patients receiving radiotherapy treatment between November 2021 and March 2022. Completed questionnaires were analysed to assess patient levels of positivity or negativity towards AI. Results were grouped into five factors, representing underlying patient perspectives, and correlation of factors with demographic variables was assessed. RESULTS: In total, 95 patients participated. Overall, there was a moderately negative patient view towards the use of AI in radiotherapy. Certain factors drew a more negative response than others, for example patients desire significant personal interaction with healthcare professionals during the course of their treatment. No significant correlation was found between the demographics of age and gender and the strength of views towards the use of AI in radiotherapy. CONCLUSION: This study has found that there are clear patient concerns around the use of AI in radiotherapy. As the use of AI in this field increases in future years, it will therefore be extremely important to educate and involve patients in the future direction of this technology.
Subject(s)
Radiation Oncology , Radiology , Humans , Artificial Intelligence , Radiology/methods , Radiography , Surveys and QuestionnairesABSTRACT
Pancreatic ductal adenocarcinoma (PDAC) is an aggressive cancer with a poor prognosis and significant symptom burden. This prospective observational study aimed to evaluate expectations and priorities of patients with advanced PDAC and their clinicians through a study survey and two quality of life (QoL) questionnaires (QLQ-C30 and PAN26) at three time-points: baseline (T1), before (T2) and after (T3) their 1st on-treatment CT scan. Over a 1-year period, 106 patients were approached, 71 patients and 12 clinicians were recruited. Choosing between treatment options, patients prioritised: 54% overall survival (OS), 26% balance between side-effects and OS, 15% could not choose and 5% favoured symptom control. These were significantly different from the clinician's answers (p < 0.001). Patients who prioritised OS had higher symptom burden (p = 0.03) and shorter OS compared to those who prioritised balance (p = 0.01). Most (86%) patients had personal goals they wanted to reach; clinicians knew of these in 12% of instances. Patient and clinicians' views regarding survival improvement from chemotherapy were significantly different: 81% of clinicians and 12% of patients thought 1-2 or 3-6 months extension, 58% of patients and 0% physicians thought 1-5 or >5 years (p < 0.001). At T1, patients had low QoL and worst symptoms were: 'Future worries', 'planning of activities', fatigue and pain. Patients were willing to accept significantly higher amounts of side-effects as a trade-off for extra time, than clinicians thought (p < 0.001). Overall, there are significant discrepancies between patient and clinicians' views about the aims, priorities and expected extension of life.
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BACKGROUND: Rhinitis medicamentosa (RM) is a type of nonallergic rhinitis caused by prolonged use of nasal decongestants (NDs). Although it is a preventable phenotype of rhinitis, little is known about patients dealing with this condition. OBJECTIVE: To gain a better understanding of patients' views and experiences of ND overuse, and potential facilitators and barriers to discontinue the overuse. METHODS: We performed a qualitative study using in-depth semistructured interviews with 22 patients who have been using an ND on an almost daily basis for at least 6 months. The interviews were conducted face-to-face, audio-recorded, and transcribed verbatim. Data analysis followed the grounded theory approach. RESULTS: Interviewees described the large impact of nasal congestion on their daily lives. Despite efforts to try other treatment options, the ND was considered the only effective aid to resolve the troublesome symptom. Most participants were aware that the prolonged use was problematic, sometimes leading to hiding behavior in order to avoid criticism by others including their health professionals. Many participants expressed a strong will to discontinue. However, multiple barriers to withdrawal were identified including fear of surgery or the impact of withdrawal on sleep, lack of good alternatives, and negative experiences with past withdrawal attempts. Patients thus face a dilemma in which the barriers to withdrawal currently outweigh the possible benefits. CONCLUSION: The use of NDs is considered indispensable by many chronic users. The facilitators and barriers identified in this study provide opportunities to reduce the use of NDs and the prevalence of RM in the future.
Subject(s)
Nasal Decongestants , Rhinitis , Humans , Nasal Decongestants/adverse effects , Rhinitis/drug therapyABSTRACT
OBJECTIVE: The use of adjuvant endocrine therapy (AET) after primary treatment of hormone receptor-positive breast cancer reduces the risk of recurrence and mortality. However, non-adherence is still common. Limited consideration has been given to how users deal with AET and the role of pharmaceutical care. Therefore, this study aims to obtain insight into the needs and wishes of women using AET regarding pharmaceutical care and eHealth. METHODS: This is a qualitative explorative study comprising semi-structured interviews (n = 16) and a focus group (n = 5) among women who use or used AET after primary early-stage breast cancer (EBC) treatment using a thematic analysis approach. RESULTS: Three themes emerged from the interviews and focus group: (1) experiences with AET use, (2) experiences with provided information and (3) needs and wishes regarding pharmaceutical care. Most women were highly motivated to use AET and indicated to have received useful information on AET. However, many expressed a strong need for more elaborate tailored and timely provided information on AET. They acknowledged the accessibility of pharmacists but reported that currently, pharmacists are hardly involved in AET care. Several women considered eHealth useful to obtain counselling and reliable information. CONCLUSION: Women need more comprehensive information and follow-up in primary setting after initial cancer treatments. A more elaborate role for the pharmacy and eHealth/mHealth, especially with regard to counselling on side effects and side effect management, could potentially improve pharmaceutical care.
Subject(s)
Breast Neoplasms , Pharmaceutical Services , Female , Humans , Breast Neoplasms/drug therapy , Chemotherapy, Adjuvant , beta-Aminoethyl Isothiourea/therapeutic use , Medication Adherence , Patient Outcome Assessment , Antineoplastic Agents, Hormonal/therapeutic useABSTRACT
INTRODUCTION: To better accommodate patients with obesity, the adoption of a person-centred approach to healthcare seems to be imperative. Eight dimensions are important for person-centred care (PCC): respect for patients' preferences, physical comfort, the coordination of care, emotional support, access to care, the continuity of care, the provision of information and education, and the involvement of family and friends. The aim of this study was to explore the views of patients with obesity on the relative importance of the dimensions of PCC. METHODS: Q methodology was used to study the viewpoints of 21 patients with obesity on PCC. Respondents were asked to rank 31 statements about the eight dimensions of PCC by level of personal significance. Using by-person factor analysis, distinct viewpoints were identified. Respondents' comments made while ranking were used to verify and refine the interpretation of the viewpoints. RESULTS: Five distinct viewpoints were identified: (1) 'someone who listens in an unbiased manner', (2) 'everything should run smoothly', (3) 'interpersonal communication is key', (4) 'I want my independence', and (5) 'support for myself and my loved ones'. Viewpoint 1 was supported by the largest number of respondents and explained the most variance in the data, followed by viewpoint 3 and the other viewpoints, respectively. CONCLUSION: Our findings highlight the need for tailored care in obesity treatment and shed light on aspects of care and support that are most important for patients with obesity. PATIENT CONTRIBUTION: Our sample consisted of patients. Patients were also involved in the development of the statement set through pilot testing.
Subject(s)
Patient Preference , Patient-Centered Care , Humans , Patient-Centered Care/methods , Factor Analysis, Statistical , Self Care , Obesity/therapyABSTRACT
(1) The supply of medical technical aids and the instructions on using them is critical for home-mechanically ventilated patients and their relatives. However, limited evidence exists on the needs-based nature of this care. (2) Aim: To gain insights into users' views on this form of care, to identify key challenges, and to derive empirically sound preliminary recommendations for its future design. (3) Methods: An explorative qualitative interview study was performed in Germany. Semi-structured interviews were conducted with home-mechanically ventilated patients and their relatives. Patients were selected through purposive sampling. Interviews were audio-recorded, transcribed, and analysed using a content analysis approach. (3) Results: 27 patients and 9 relatives were interviewed. From their point of view, ventilation-specific equipment is generally reliable and is seen as a belonging of the patient. However, if the patient lacks competence in using the technology or if information or instructions are neglected, ambiguous and unsafe situations easily arise. (4) Conclusions: The present study is one of the first to provide insights into technical aid supply in home-mechanical ventilation from the users' point of view. It highlights the need for continuous professional support and for evidence-based educational strategies that promote safety among the users of technical aids in home care.
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BACKGROUND: When children and young people (CYP) are diagnosed with a brain tumour, Magnetic Resonance Imaging (MRI) is key to the clinical management of this condition. This can produce hundreds, and often thousands, of Magnetic Resonance Images (MRIs). METHODS: Semi-structured interviews were undertaken with 14 families (15 parents and 8 patients), and analysed using Grounded Theory. Analysis was supported by the Framework Method. RESULTS: Although the focus of the research was whether paediatric patients and their families find viewing MRIs beneficial, all patients and parents discussed difficult times during the illness and using various strategies to cope. This article explores the identified coping strategies that involved MRIs, and the role that MRIs can play in coping. Coping strategies were classified under the aim of the strategy when used: 'Normalising'; 'Maintaining hope and a sense of the future'; 'Dealing with an uncertain future'; and 'Seeking Support'. CONCLUSIONS: Coping and finding ways to cope are clearly used by patients and their families and are something that they wish to discuss, as they were raised in conversations that were not necessarily about coping. This suggests clinicians should always allow time and space (in appointments, consultations, or impromptu conversations on the ward) for patient families to discuss ways of coping. MRIs were found to be used in various ways: to maintain or adapt normal; maintain hope and a sense of the future; deal with an uncertain future; and seek support from others. Clinicians should recognise the potential for MRIs to aid coping and if appropriate, suggest that families take copies of scans (MRIs) home. Professional coaches or counsellors may also find MRIs beneficial as a way to remind families that the child is in a more stable or 'better' place than they have been previously.
Subject(s)
Adaptation, Psychological/classification , Brain Neoplasms/diagnostic imaging , Brain Neoplasms/psychology , Family/psychology , Magnetic Resonance Imaging/psychology , Adolescent , Child , Counselors , Cross-Sectional Studies , Female , Forecasting , Grounded Theory , Hope , Humans , Male , Pessimism , Qualitative Research , Social Support , Wit and Humor as TopicABSTRACT
BACKGROUND: Deferred consent is used to recruit patients in emergency research, when informed consent cannot be obtained prior to enrolment. This model of consent allows studies to recruit larger numbers of participants, especially where a surrogate-decision maker may be unavailable to provide consent. Whilst deferred consent offers the potential to promote trial diversity by including under-served groups, it is ethically complex and views about its use amongst these populations require further exploration. The aim of this article is to build upon recent initiatives to improve inclusivity in trials, such as the NIHR INCLUDE project, and consider whether trials methodology research is inclusive, focusing on ethnic minority populations' attitudes towards the use of deferred consent. MAIN TEXT: Findings from the literature suggest that research regarding attitudes toward recruitment methods like deferred consent largely fail to adequately represent ethnic minorities. Many studies fail to report the composition of patient samples or conduct analyses on any differences between specific patient groups. In those that do, the categorisation of ethnic groups is ambiguous. Frequently diversely different groups are considered as more homogenous than they are. Whilst deferred consent is deemed generally acceptable, analysis of patient sub-groups shows that this attitude is not universal. Those from racial and ethnic minority backgrounds reported higher levels of unacceptability, which was impacted by previous first or second-hand experience of its use and historical mistrust in research. However, whilst deferred consent was found to increase the numbers of black participants enrolled in some trials, their over-enrolment in other trials may raise further concerns. CONCLUSIONS: Inclusivity in clinical trials is important, as highlighted by the COVID-19 pandemic. To improve this, we must ensure that methodological studies such as those exploring attitudes to research are inclusive. More effort is needed to understand the views of under-served groups, such as ethnic minorities, toward research in order to improve participation in clinical trials. Our findings echo those from the INCLUDE project, in that better reporting is needed and increasing the confidence of ethnic minority groups in research requires improving representation throughout the research process. This will involve diversifying research teams and ethics committees.
Subject(s)
Clinical Trials as Topic , Ethnicity , Informed Consent , Minority Groups , Patient Selection , COVID-19 , Humans , PandemicsABSTRACT
AIMS: Seizure detection using heart rate variability, from a detailed analysis by deep learning analysis system, may help patients with epilepsy to manage their symptoms. This exploratory study aims to identify patient and caregiver groups, according to acceptability factors. METHODS: Two versions of the same questionnaire were designed to survey quality of life, self-efficacy, and patients with epilepsy and caregivers on seizure detection acceptability using a patch, after watching a video that described a patch connected to a companion application. Participation was voluntary and anonymous. RESULTS: Responses from 68 patients with epilepsy and 33 caregivers were collected. Patients with epilepsy were grouped into three clusters: supportive, indeterminate, and reluctant to use the technology. Caregivers were also grouped into three clusters: supportive, reluctant to use the technology, either with sensitivity to their environment, or with hedonic motivation. The clusters enable the distinction between participants in self-efficacy. CONCLUSIONS: Clustering of patients with epilepsy and caregivers should be a prerequisite to the design of a technological device intended to promote self-management of seizure detection. These groupings distinguish those who are favorable, reluctant or undecided to use the technology. These can be based on an assessment of self-efficacy.
Subject(s)
Caregivers , Epilepsy , Cluster Analysis , Epilepsy/diagnosis , Humans , Quality of Life , Seizures/diagnosis , TechnologyABSTRACT
The unproven stem cell intervention (SCI) industry is a global health problem. Despite efforts of some nations, the industry continues to flourish. In this paper, we call for a global approach and the establishment of a World Health Organization (WHO) Expert Advisory Committee on Regenerative Medicine to tackle this issue and provide guidance. The WHO committee can harmonize national regulations; promote regulatory approaches responsive to unmet patient needs; and formulate an education campaign against misinformation. Fostering an international dialog and developing recommendations that can be adopted by member states would effectively address the global market of unproven SCIs.
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Government Regulation , Health Policy/legislation & jurisprudence , Public Health/legislation & jurisprudence , Regenerative Medicine/legislation & jurisprudence , Stem Cell Transplantation/legislation & jurisprudence , Humans , Public Health/ethics , Stem Cell Transplantation/ethics , World Health OrganizationABSTRACT
OBJECTIVE: The shielding guidance in the UK for the clinically extremely vulnerable (CEV) commenced on 23 March 2020 in response to the coronavirus disease 2019 (COVID-19) pandemic. The purpose of this study was to explore the impact of the pandemic and shielding on patients with lupus and related systemic autoimmune rheumatic diseases (SARDs). METHODS: This was a mixed-methods cohort study (n = 111) including pre-lockdown baseline surveys (March 2020), follow-up surveys (June 2020) and in-depth interviews during July 2020 (n = 25). RESULTS: Most participants had a high level of anxiety regarding their mortality risk from COVID-19 and supported the concept of shielding. Shielding allocations and communications were perceived as inconsistently applied and delivered. More than half of those not classified as CEV reported feeling abandoned, at increased risk and with no support. Shielding communications increased feelings of being 'cared about', but also increased fear, and the 'vulnerable' labelling was perceived by some to damage social and self-identity. More than 80% of those classified as CEV stated that the classification and subsequent communications had changed their social-mixing behaviour. Despite many negative impacts of COVID-19 and shielding/lockdown being identified, including isolation, fear and reduced medical care, the quantitative data during the pandemic showed increases in most measures of wellbeing (which was low at both time points) from pre-lockdown, including reductions in the impact of fatigue and pain (P-values < 0.001). CONCLUSION: Shielding classifications and communications were, in general, viewed positively, although they were perceived as inconsistently delivered and anxiety-provoking by some participants. More frequent positively framed communication and wellbeing support could benefit all SARD patients. Slower-paced lockdown lifestyles might confer health/wellbeing benefits for some people with chronic diseases.
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Background Codeine is one of the most commonly used opioids worldwide and is available in different formulations, often combined with other simple analgesics. There is a growing concern of the potential harms associated with codeine misuse in the Australian community, and for this reason codeine containing analgesics have been upscheduled in Australia to 'prescription only medicines' from February 2018. There is currently limited knowledge on the views of Australian adults experiencing pain symptoms on this codeine restriction, and whether this change has impacted their ability to adequately manage their pain. Objective To investigate the views of adults experiencing pain on the 2018 codeine upscheduling in Australia. Setting Adults experiencing pain symptoms, predominantly recruited from Victoria, Australia. Method A descriptive cross-sectional study was conducted using a pre-tested customised anonymous self-administered questionnaire between January and March 2019. To capture a broad range of demographics, participants were recruited from ten Victorian community pharmacies across metropolitan Melbourne, Australia. Main outcome measure Opinions of Australian adults experiencing pain to targeted questions regarding the 2018 codeine upscheduling, including perceived advantages and disadvantages. Results A total of 120 participants completed the questionnaire. Sixty-two (52%) participants agreed/strongly agreed that codeine was helpful in alleviating pain symptoms before a prescription was required; while 43% of participants felt the codeine restriction has made it more difficult to manage their pain, with 33% unsure. Participants who were in favour of the codeine upscheduling believed that they are now more encouraged to consult healthcare professionals and make better use of the pain management services made available to them in the Australian community; however some now question the value of pharmacists in this context, given that there is now a reduced array of analgesic medicines available at pharmacies without a prescription. Conclusion This study showed there are mixed views, with some participants being unsure or not in favour of the codeine upscheduling, particularly based on qualitative responses. There is also opportunity in this space for healthcare providers to extend beyond standard practice and offer alternative pain management advice and support now that codeine is no longer available in Australian pharmacies without a prescription.
Subject(s)
Codeine , Community Pharmacy Services , Adult , Analgesics , Analgesics, Opioid/adverse effects , Codeine/adverse effects , Cross-Sectional Studies , Humans , Nonprescription Drugs , Pain/drug therapy , Pain/epidemiology , Pharmacists , Prescriptions , Victoria/epidemiologyABSTRACT
AIMS: Seizure detectors could have many positive effects on the quality of life of people with epilepsy (PWE) such as alarms to reduce seizure-related injuries or reliable seizure counts leading to improved epilepsy management. As seizure detection gains increasing interest within the epilepsy research community, guidelines for patient-centered designs are needed. This study aims to detail the preferences, needs and concerns regarding potential seizure detectors, of PWE and their caregivers across Canada. METHODS: Two questionnaires were designed to survey PWE and their caregivers on seizure detection acceptability and to collect general clinical characteristics. The surveys were available online for nine weeks and were promoted by Canadian organizations of PWE. Participation was voluntary and anonymous. RESULTS: Responses from 221 PWE and 171 caregivers were collected. Ninety-seven percent of PWE and 99% of caregivers expressed interest in seizure detection. Most would use seizure detectors continuously, in conjunction with a seizure diary, and wanted automated alarms. Smartwatches and bracelets/rings were considered most acceptable and would be worn continuously by 58% and 61% of PWE, respectively. Additional value was attributed to multimodal seizure detection. Responders were most concerned about false negatives, comfort and cost. They expected seizure detection to improve their quality of life and quality of care, and felt confident in their ability to use a seizure detector. CONCLUSIONS: While PWE and caregivers in Canada show great enthusiasm for seizure detection, their opinions are shaped by their perception of the effectiveness and reliability of this technology and its cost. A preliminary technology acceptance model and recommendations promoting the development of seizure detectors demonstrating an understanding of their future users are presented. Future investigations should focus on a larger population of patients who have previously used seizure detection devices to assess user-feedback.
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Caregivers , Quality of Life , Canada , Humans , Reproducibility of Results , Seizures/diagnosis , Surveys and QuestionnairesABSTRACT
Patients with chronic myeloid leukemia (CML) in deep molecular remission may discontinue tyrosine kinase inhibitor (TKI) treatment without relapse. The present study aims to gain insight into the views of CML patients on TKI treatment discontinuation and identify factors that are associated with their willingness to discontinue treatment. A cross-sectional study, among adult Dutch CML patients was conducted to assess willingness and their views on benefits of and concerns about discontinuation. A total of 185 patients participated of whom 76% were willing to discontinue TKI-treatment. Patients considered the absence of side effects the most important benefit whereas fear of disease recurrence was their most prominent concern. Adequate monitoring was the most important prerequisite for TKI-treatment discontinuation. However, ambiguity with respect to perquisites indicate that patients on long-term TKI treatment should be adequately informed both on the possibility to discontinue treatment and on its benefits, risks, and measures that address risks.
Subject(s)
Leukemia, Myelogenous, Chronic, BCR-ABL Positive , Adult , Cross-Sectional Studies , Humans , Leukemia, Myelogenous, Chronic, BCR-ABL Positive/drug therapy , Protein Kinase Inhibitors/adverse effects , RecurrenceABSTRACT
Lupus is a multi-system autoimmune rheumatic disease with increased morbidity and mortality. Some manifestations are life-threatening with many aspects of living with the disease, difficulties in diagnosis and accessing appropriate medical care, having an impact on quality of life. The disease itself, and these patients' perspectives, are currently poorly understood and under-researched. The LUPUS UK forum of conversations between over 25,000 members provides a rich environment to explore the views of these patients. Conversations on the LUPUS UK online forum were qualitatively explored using virtual ethnography and thematic analysis. The forum itself and positive medical relationships were widely considered to provide a means of support, understanding and validation. Forum members expressed difficulties in diagnosis, disease management, and the psychological and physical impact of living with an unpredictable, poorly understood disease, often with life-changing symptoms. Invalidating personal, social and medical environments were perceived as exacerbating these difficulties. Delays in diagnosis and misdiagnoses were frequently discussed as causing significant damage, especially when symptoms were disbelieved or dismissed. Invalidation was the key theme with further themes of: Uncertainty, Medical (mis)communications and misunderstandings, Navigating health systems and Resilience and support. Although effective care and support was reported by some members, the negative impact of living with an incurable, life-changing disease was often exacerbated by perceived invalidation, uncertainty, and difficulties in multiple areas of members' lives. Improved knowledge of the disease and greater support at all stages of the diagnostic journey could improve outcomes and quality of life for these patients.
Subject(s)
Adaptation, Physiological , Lupus Erythematosus, Systemic/psychology , Quality of Life/psychology , Social Support , Diagnostic Errors , Female , Health Knowledge, Attitudes, Practice , Health Services Accessibility , Humans , Lupus Erythematosus, Systemic/epidemiology , Physician-Patient Relations , Qualitative Research , Resilience, Psychological , United Kingdom/epidemiologyABSTRACT
OBJECTIVES: The aim was to explore patient experiences and views of their symptoms, delays in diagnosis, misdiagnoses and medical support, to identify common experiences, preferences and unmet needs. METHODS: Following a review of LUPUS UK's online forum, a questionnaire was posted online during December 2018. This was an exploratory mixed methods study, with qualitative data analysed thematically and combined with descriptive and statistically analysed quantitative data. RESULTS: There were 233 eligible respondents. The mean time to diagnosis from first experiencing symptoms was 6 years 11 months. Seventy-six per cent reported at least one misdiagnosis for symptoms subsequently attributed to their systemic autoimmune rheumatic disease. Mental health/non-organic misdiagnoses constituted 47% of reported misdiagnoses and were indicated to have reduced trust in physicians and to have changed future health-care-seeking behaviour. Perceptions of physician knowledge and listening skills were highly correlated with patient ratings of trust. The symptom burden was high. Fatigue had the greatest impact on activities of daily living, yet the majority reported receiving no support or poor support in managing it. Assessing and treating patients holistically and with empathy was strongly felt to increase diagnostic accuracy and improve medical relationships. CONCLUSION: Patient responses indicated that timely diagnosis could be facilitated if physicians had greater knowledge of lupus/related systemic autoimmune diseases and were more amenable to listening to and believing patient reports of their symptoms. Patient priorities included physicians viewing them holistically, with more emotional support and assistance in improving quality of life, especially in relation to fatigue.
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BACKGROUND: The introduction of multiparametric magnetic resonance imaging (mpMRI) has improved the diagnosis of suspected prostate cancer, accurately risk-stratifying men before a biopsy. However, pre-biopsy mpMRI represents a significant deviation from the traditional approach of prostate specific antigen testing with subsequent systematic transrectal ultrasound-guided prostate biopsy and we have not yet explored the views of men who experience this new pathway. The purpose of the PACT study (PAtient views and aCceptance of mulTiparametric MRI) is to explore men's perceptions of mpMRI. METHODS: PACT will be conducted at teaching hospitals in which mpMRI is central to the prostate cancer diagnostic pathway using a two-phase, mixed-methods, quantitative and qualitative approach. In phase I, men referred with suspected prostate cancer will complete detailed surveys to explore their views on the mpMRI-directed pathway compared to the traditional pathway and on what constitutes 'significant' prostate cancer. In phase II, these themes will be expanded upon with in-depth, semi-structured interviews. Qualitative data will be transcribed and thematically analysed, and quantitative questionnaire responses will be analysed statistically. DISCUSSION: PACT will provide the first detailed insight into patient perceptions on the use and acceptability of mpMRI. Furthermore, results from PACT will help contribute to the resolution of outstanding controversies that surround this technology.
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Introduction: Community pharmacists are one of the most frequently accessed health professionals who can be involved in the provision of ongoing asthma management within the primary care setting. The aim of this study was to identify patients' views regarding current asthma care provided by their pharmacists and their perspectives on future pharmacy-based asthma services.Methods: This is a qualitative approach with an interview guide. Asthma patients were purposively selected. Interviews were conducted from April to June 2017. Patient's opinions about asthma and its management and their experiences regarding asthma care provided by pharmacists were collected. Data were analyzed using content analysis.Results: Thirty-three interviews were conducted. Asthma literacy was low. There was dis-engagement with the health care system, with only a few participants trusting conventional health care professionals. Alternative medicine systems and practitioners were better trusted and participants had strong preferences for family/peer involvement in their asthma care. Participants also had misunderstandings regarding their asthma disease and medications. Participants had experienced little pharmaceutical care provided by pharmacists but would welcome it in the future.Conclusion: Given the accessibility of community pharmacy venues and readiness of the profession for more involved care of chronic disease patients, it may be recommended that Indonesian community pharmacists should adopt the provision of pharmaceutical care models for asthma. Such pharmaceutical care models need to incorporate patients' unique sociocultural health beliefs, preferences for alternative medicines and family/social peer involvement as well as stronger collaboration between pharmacists and physicians.
Subject(s)
Anti-Asthmatic Agents/therapeutic use , Asthma/drug therapy , Community Pharmacy Services/organization & administration , Pharmacists/organization & administration , Professional Role , Adult , Attitude of Health Personnel , Female , Health Knowledge, Attitudes, Practice , Humans , Indonesia , Male , Patient Education as Topic , Patient Preference , Pharmacists/psychology , Qualitative ResearchABSTRACT
OBJECTIVE: To examine patient perceptions of the role of health care providers in tobacco control and tobacco-related services they should provide after the introduction of national smoke-free hospital grounds legislation in Spain. DESIGN: Multi-center cross-sectional study. SETTING: Thirteen hospitals in Barcelona province in 2014-2015. PARTICIPANTS: A total of 1,047 adult hospital patients, with a stay ≥ 24 h were randomly selected. METHOD: We explored participants' perceptions of the role of health professionals and hospitals in tobacco control by asking about their agreement with several statements after the introduction of national legislation on smoke-free hospital grounds: (i) health professionals "should set an example and not smoke" and "should provide smoking cessation support"; (ii) hospitals "should provide smoking cessation treatments" and are "role model organizations in compliance with the smoke-free legislation", and (iii) "hospitalization is a perfect moment to quit smoking". Responses were described overall and according to participant and hospital characteristics: patient sex and age, type of hospital unit, number of beds, and smoking prevalence among hospital staff. RESULTS: The majority of participants considered that health professionals should be role models in tobacco cessation (75.3%), should provide smoking cessation support to patients (83.0%), and that hospitalization is a good opportunity for initiating an attempt to quit (71.5%). Inpatients admitted to general hospitals where smoking cessation was not given as part of their portfolio, with a low level of implementation in tobacco control, and who stayed in surgical units had higher expectations of receiving smoking cessation interventions. CONCLUSIONS: Inpatients strongly support the role of hospitals and health professionals in tobacco control and expect to receive smoking cessation interventions during their hospital stay. Systematically providing smoking cessation services in hospitals may have a relevant impact on health outcomes among smokers and on health care system expenditures.