Factors and Situations Affecting the Value of Patient Preference Studies: Semi-Structured Interviews in Europe and the US.
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SUBMITTER: Whichello C
PROVIDER: S-EPMC6759933 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundPatient preferences (PP), which are investigated in PP studies using qualitative or quantitative methods, are a growing area of interest to the following stakeholders involved in the medical product lifecycle: academics, health technology assessment bodies, payers, industry, patients, physicians, and regulators. However, the use of PP in decisions along the medical product lifecycle remains limited. As the adoption of PP heavily relies on these stakeholders, knowledge of their perceptions of PP is critical.ObjectiveThis study aimed to characterize stakeholders' attitudes, needs, and concerns with respect to PP in decision making along the medical product lifecycle.MethodsSemi-structured interviews (n?=?143) were conducted with academics (n?=?24), health technology assessment/payer representatives (n?=?24), industry representatives (n?=?24), patients, caregivers and patient representatives (n?=?24), physicians (n?=?24), and regulators (n?=?23) from seven European countries and the USA. Interviews were conducted between April and August 2017. The framework method was used to organize the data and identify themes and key findings in each interviewed stakeholder group.ResultsInterviewees reported being unfamiliar (43%), moderately familiar (42%), or very familiar (15%) with preference methods and studies. Interviewees across stakeholder groups generally supported the idea of using PP in the medical product lifecycle but expressed mixed opinions about the feasibility and impact of using PP in decision making. Interviewees from all stakeholder groups stressed the importance of increasing stakeholders' understanding of the concept of PP and preference methods and ensuring patients' understanding of the questions asked in PP studies. Key concerns and needs in each interviewed stakeholder group were as follows: (1) academics: investigating the validity, reliability, reproducibility, and generalizability of preference methods; (2) health technology assessment/payer representatives: developing quality criteria for evaluating PP studies and gaining insights into how to weigh them in reimbursement/payer decision making; (3) industry representatives: obtaining guidance on PP studies and recognition on the importance of PP from decision makers; (4) patients, caregivers, and patient representatives: providing an incentive and adequate information towards patients when participating in PP studies; (5) physicians: avoiding bias as a result of commercial agendas in PP studies and clarifying how to deal with subjective and emotional elements when measuring PP; and (6) regulators: avoiding the misuse of PP study results to overrule the traditional efficacy and safety criteria used for marketing authorization and obtaining robust PP study results.ConclusionsDespite the interest all interviewed stakeholder groups reported in PP, the effective use of PP in decision making across the medical product lifecycle is currently hampered by a lack of standardization and consensus on how to both measure and use PP.
| S-EPMC6697755 | biostudies-literature
Project description:PurposeCryptoglandular anal fistula continues to be a subject of extensive surgical research due to the lack of effective and enduring treatments, some of which incur risks to continence and quality of life. However, the patient experience of disease has seldom been reported. The aims of this study are to understand the impact of living with a fistula and the treatment outcomes that are valued by patients.MethodsPatients with cryptoglandular anal fistula were recruited using purposive sampling from two tertiary referral centres in the UK and the Netherlands. Patients underwent semi-structured interviews that were audio-recorded and transcribed verbatim. Dutch transcripts were translated into English and underwent independent, thematic analysis using open coding by two study team members to identify common themes and sub-themes.ResultsTwenty interviews were conducted before saturation was reached (11 male, median age 49, Interquartile range 39-55 years). Four broad themes emerged, covering the physical symptoms of fistula, the patient journey towards understanding the condition, life impact, and treatment. Several inter-related sub-themes were found, reflecting the extensive impact and adjustment that the disease entails.ConclusionThe impact of cryptoglandular anal fistula extends beyond the physical symptoms of pain and discharge, requires significant readjustment, and often negatively impacts psycho-social wellbeing. These aspects of disease should receive greater attention in future assessment of treatment and quality of life.
| S-EPMC9250474 | biostudies-literature
Project description:BackgroundDifferent diagnostic interviews are used as reference standards for major depression classification in research. Semi-structured interviews involve clinical judgement, whereas fully structured interviews are completely scripted. The Mini International Neuropsychiatric Interview (MINI), a brief fully structured interview, is also sometimes used. It is not known whether interview method is associated with probability of major depression classification.AimsTo evaluate the association between interview method and odds of major depression classification, controlling for depressive symptom scores and participant characteristics.MethodData collected for an individual participant data meta-analysis of Patient Health Questionnaire-9 (PHQ-9) diagnostic accuracy were analysed and binomial generalised linear mixed models were fit.ResultsA total of 17 158 participants (2287 with major depression) from 57 primary studies were analysed. Among fully structured interviews, odds of major depression were higher for the MINI compared with the Composite International Diagnostic Interview (CIDI) (odds ratio (OR) = 2.10; 95% CI = 1.15-3.87). Compared with semi-structured interviews, fully structured interviews (MINI excluded) were non-significantly more likely to classify participants with low-level depressive symptoms (PHQ-9 scores ≤6) as having major depression (OR = 3.13; 95% CI = 0.98-10.00), similarly likely for moderate-level symptoms (PHQ-9 scores 7-15) (OR = 0.96; 95% CI = 0.56-1.66) and significantly less likely for high-level symptoms (PHQ-9 scores ≥16) (OR = 0.50; 95% CI = 0.26-0.97).ConclusionsThe MINI may identify more people as depressed than the CIDI, and semi-structured and fully structured interviews may not be interchangeable methods, but these results should be replicated.Declaration of interestDrs Jetté and Patten declare that they received a grant, outside the submitted work, from the Hotchkiss Brain Institute, which was jointly funded by the Institute and Pfizer. Pfizer was the original sponsor of the development of the PHQ-9, which is now in the public domain. Dr Chan is a steering committee member or consultant of Astra Zeneca, Bayer, Lilly, MSD and Pfizer. She has received sponsorships and honorarium for giving lectures and providing consultancy and her affiliated institution has received research grants from these companies. Dr Hegerl declares that within the past 3 years, he was an advisory board member for Lundbeck, Servier and Otsuka Pharma; a consultant for Bayer Pharma; and a speaker for Medice Arzneimittel, Novartis, and Roche Pharma, all outside the submitted work. Dr Inagaki declares that he has received grants from Novartis Pharma, lecture fees from Pfizer, Mochida, Shionogi, Sumitomo Dainippon Pharma, Daiichi-Sankyo, Meiji Seika and Takeda, and royalties from Nippon Hyoron Sha, Nanzando, Seiwa Shoten, Igaku-shoin and Technomics, all outside of the submitted work. Dr Yamada reports personal fees from Meiji Seika Pharma Co., Ltd., MSD K.K., Asahi Kasei Pharma Corporation, Seishin Shobo, Seiwa Shoten Co., Ltd., Igaku-shoin Ltd., Chugai Igakusha and Sentan Igakusha, all outside the submitted work. All other authors declare no competing interests. No funder had any role in the design and conduct of the study; collection, management, analysis and interpretation of the data; preparation, review or approval of the manuscript; and decision to submit the manuscript for publication.
| S-EPMC6415695 | biostudies-literature
Project description:Background and objectivesMany donors and recipients report an improved bond posttransplantation; however, unexpected conflicts and tension may also occur. Insights into the lived experiences of the donor-recipient relationship can inform strategies for interventions and support. We aimed to describe donor and recipient expectations and experiences of their relationship before and after living kidney donor transplantation.Design, setting and participantsSemistructured interviews were conducted with 16 donor-recipient pairs before the transplant and 11-14 months post-transplant. Transcripts were analysed thematically.ResultsWe identified seven themes (with respective subthemes): donation as enacting familial responsibility for care; analytical decision making to mitigate regret (avoiding anticipated regret and maintaining control, removing emotional impulsivity); strengthened interpersonal ties (gaining a deeper appreciation among family members, stronger empathy for each other, improving social participation); instability of relational impacts (anger and aggression threatening dynamics, unanticipated stress and emotional lability, triggering familial tension); renegotiating social roles (unexpected continuation of caregiving responsibilities, inability to relinquish the caregiving role, disappointment with unfulfilled renewal of intimacy, dissatisfaction over discrepant energy levels); guilt over unmet expectations and inevitability of the gift relationship (vague and transient indebtedness, expectation of reciprocity, transferring kidney ownership).ConclusionsDonor-recipient relationships may be improved through increased empathy, appreciation, and ability to participate in life together; however, unfulfilled expectations and behavioural and emotional changes in recipients (a side effect related to immunosuppression) remain unresolved consequences of living kidney donor transplantation. Education and counselling to help donors and recipients adjust to potential changes in relationship dynamics may help protect and foster relational stability postdonation.
| S-EPMC6500358 | biostudies-literature
Project description:BackgroundTimeliness is viewed as a key feature of health-care quality. Internationally, this is challenging. In England, cancer waiting time targets are currently not being met. For example, between 2015 and 2018 only 71% of patients with upper gastrointestinal (UGI) cancer started treatment within the recommended 62 days of referral.ObjectiveWe explored patients' experiences to identify areas for service improvement.DesignSemi-structured interviews were conducted.Setting and participantsTwenty patients who were referred through the urgent (two-week) GP referral route and were within six months of receiving first treatment were recruited.Data analysisData from the interviews were analysed thematically.ResultsFour themes were developed: organization of care; diagnosis; support; and views and expectations of the NHS. Patients described cross-cutting issues such as complex and varied pathways and uncertainty about what would happen next. They felt daunted by the intensity and speed of investigations. They were presented with a recommended course of action rather than options and had little involvement in decision making. They were grateful for care, reluctant to complain and resigned to the status quo.Discussion and conclusionsIn order to meet patient needs, the NHS needs to improve communication and streamline pathways. Future cancer pathways also need to be designed to support shared decision making, be truly person-centred and informed by patient experience.
| S-EPMC7752202 | biostudies-literature
Project description:BACKGROUND:Patients within safety-net settings are less likely to access health information on patient portals, despite expressed interest. Family and friends are important resources to assist these patients (ie, Medicaid recipients, older patients, patients with limited English proficiency) in navigating health systems, and provider support of the use of patient portals among these groups may also facilitate caregivers' use of their patients' portal. OBJECTIVE:Because safety net providers work closely with caregivers to care for their patients, we used qualitative methods to explore safety net providers' perspectives on portal use among caregivers for their patients, especially as there is limited literature about caregivers' use of portals in the safety net. METHODS:We conducted 45- to 60-min semistructured telephone interviews with providers from three large California safety-net health systems. The interviews focused on providers' experiences with caregivers, caregiver roles, and how the portal could be leveraged as a tool to support caregivers in their responsibilities. A total of three coders analyzed the interview transcripts using both deductive and inductive approaches and established a consensus regarding major themes. RESULTS:Of the 16 participants interviewed, 4 specialized in geriatrics, and all held a leadership or administrative role. We described themes highlighting providers' recognition of potential benefits associated with caregiver portal use and specific challenges to caregiver engagement. CONCLUSIONS:Providers recognized the potential for portals to improve information delivery and communication by helping caregivers assist socially and medically complex patients in the safety net. Providers in safety net sites also discussed a clear need for better ways to keep in touch with patients and connect with caregivers, yet security and privacy are perhaps of higher importance in these settings and may pose challenges to portal adoption. They noted that caregivers of patients in the safety net likely face similar communication barriers as patients, especially with respect to digital literacy, health literacy, and English proficiency. Further research is needed to assess and support caregivers' interest and ability to access portals across barriers in health and digital literacy, and English proficiency. Portal platforms and health systems must also address specific strategies to uphold patient preferences while maintaining privacy and security.
| S-EPMC7400036 | biostudies-literature
Project description:BackgroundNorthwestern Nicaragua has a high prevalence of chronic kidney disease (CKD) of unknown cause among young adult men. In addition, frequent occurrence of urinary tract infections (UTI) among men and a dysuria syndrome described by sugarcane workers as "chistata" are both reported. This study examines health professionals´ perceptions regarding etiology of these conditions and their treatment approaches, including use of potentially nephrotoxic medications.MethodsNineteen in-person semi-structured interviews were conducted in November 2010 among ten physicians and nine pharmacists practicing in the region.ResultsHealth professionals perceived CKD as a serious and increasing problem in the region, primarily affecting young men working as manual laborers. All interviewees regarded occupational and environmental exposure to sun and heat, and dehydration as critical factors associated with the occurrence of CKD. These factors were also considered to play a role in the occurrence of chistata in the region. Health professionals indicated that reluctance among workers to hydrate might be influenced by perceptions of water contamination. Symptoms often were treated with non-steroidal anti-inflammatory drugs (NSAIDs), diuretics and antibiotics. Physicians acknowledged that the diagnosis of UTI usually was not based on microbial culture and opined that the use of potentially nephrotoxic medications may be contributing to CKD.ConclusionsInterviews provided evidence suggesting that medications such as diuretics, antibiotics and NSAIDs are widely used and sold over the counter for symptoms that may be related to dehydration and volume depletion. These factors, alone or in combination, may be possible contributors to kidney damage. Acute kidney damage coupled with volume depletion and exposures including medications and infectious agents should be further evaluated as causal factors for CKD in this region.
| S-EPMC3637184 | biostudies-literature
Project description:Background: Resilient hospitals are increasingly recognized as a cornerstone of disaster reduction in global policies such as the Sendai Framework for Action. However, current hospital resilience frameworks emerged from pre-disaster conceptualizations, and have not been verified in real-life disaster contexts nor in the frontlines. Our aim was to study a tertiary hospital's resilience after the 2015 earthquake in Nepal, as experienced by its staff. Methods: We undertook a qualitative study in the Tribhuvan University Teaching Hospital (TUTH), where we conducted 18 semi-structured interviews with hospital staff. We inductively created themes to describe the earthquake burden to the hospital, and to analyze individual resilience of hospital staff. In addition, we deductively documented the resilience of the hospital as a system, according to the system resilience dimensions: means of resilience (redundancy and resourcefulness), and ends of resilience (robustness and rapidity). Results: In terms of robustness, TUTH increased its capacity for earthquake victims as elective activities were temporarily interrupted and quality of care was not a priority. Three stages of rapidity were identified: critical rapidity to address immediate needs, stabilizing rapidity until the hospital re-started routine activities, and recovery rapidity. In addition to the disaster plan, emerging adaptations played a major role in redundancy and resourcefulness. We found that individual resilience depended on three determinants: safety, meaningfulness, and sense of belonging. Conclusions: Hospital resilience results from a complexity of emerging and planned adaptations, as well as from interdependencies with individual resilience. Frameworks and plans to improve hospital resilience must reflect flexibility of response, and a concern for well-being of hospital staff is central for sustainable disaster response and improved resilience.
| S-EPMC7952522 | biostudies-literature
Project description:Objectives: A factor contributing to the value of patient preference studies is patient centricity. This study aimed to explore how patients want to be involved in the design and conduct of patient preference studies. In addition, we investigated patients' expectations regarding the communication of study results back to patients. Methods: Semi-structured interviews were conducted with patient representatives within three different disease areas: rheumatic diseases, cancer, and neuromuscular disorders. For each disease area, interviews were conducted with interviewees from Belgium, the Netherlands and the United Kingdom. Interviews followed a predefined interview guide covering topics relating to timing, level, and requirements for patient involvement in patient preference studies, as well as communication of results. Interviews were audio-recorded, transcribed and analyzed using framework analysis in NVivo 12. Results: A total of 14 interviews were conducted. Some interviewees believed that patients should be involved in all steps of a patient preference study. Patient involvement seemed most valuable during the design phase to support defining research questions and instrument design. During analysis, patients can be involved for optimal interpretation of results. Most interviewees mentioned that patient involvement should be on the level of advice or collaboration, not control. Interviewees expressed requirements for patient involvement relating to the knowledge of the involved patient, time investment, compensation and other incentives. Regarding communication of results, most interviewees wished to receive a brief and lay summary of the results, followed by a detailed explanation of both individual and average results accompanied by visuals. Conclusions: Patient involvement in patient preference studies could increase question comprehension by study participants and ensure correct interpretation of results by researchers. Patients want to be involved as advisors or collaborators, and considering their personal situation as well as establishing agreements on roles, time involvement and compensation early on will result in a most optimal partnership.
| S-EPMC7100374 | biostudies-literature
Project description:ObjectiveTo describe the lived experience of patients undergoing diagnosis and treatment of placenta accreta spectrum (PAS).DesignQualitative study of semi-structured interviews. A content analysis was used to analyse interview data using a consistent set of codes to designate data segments that contain similar material. Codes were analysed and grouped based on thematic similarities. Thematic results were systematically reviewed, verified and audited to address trustworthiness and rigour of the data and analysis.SettingA single PAS programme in Utah, USA, from 2017 to 2020.ParticipantsPatients with PAS during the study period were eligible. Those experiencing fetal demise or termination were excluded. Of 25 patients contacted at random, 17 agreed to participate in interviews. Those included were predominantly non-Hispanic white, highly parous, with average age of 34.7 years.ResultsThe lived experiences of patients with PAS emerged across the time continuum from diagnosis, pregnancy, birth, to postpartum care and recovery. Themes common across the care continuum were: the emotional burden of diagnosis and management; fear and uncertainty related to health outcomes; and lack of autonomy and medical helplessness related to medical decision-making. Many patients experienced birth-related trauma, mourned the loss of future fertility and were dissatisfied with the lack of options for treatment for this serious pregnancy complication.ConclusionsPatients undergoing diagnosis and treatment for PAS often experienced care that conflicted with their goals for pregnancy and birth. Clinical care for PAS would benefit from interventions aiming to engage patients and providers in shared decision-making and systems designed to address the social, psychological and emotional needs of patients with PAS.
| S-EPMC8572396 | biostudies-literature