The effects of cancer research participation on patient experience: a mixed-methods analysis.
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SUBMITTER: McGrath-Lone L
PROVIDER: S-EPMC5095768 | biostudies-literature | 2016 Nov
REPOSITORIES: biostudies-literature
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Project description:IntroductionPatient-centered outcome measurement (PCOM) is essential to capture the outcomes important to patients. However, it presents unique challenges in rare diseases, particularly those that are "young" (not diagnosed before the twenty-first century), with limited literature, lack of disease-specific patient-reported outcome (PRO) measures, and difficult sampling and data collection. One example of this is NUT (nuclear protein in testis) carcinoma (NUTca), a rare and rapidly progressing cancer, with tumors preliminary in the head, neck, and lungs. The published literature on NUTca is scarce. The limited number of case reports focus primarily on the clinical development and presentation of tumors. Currently, there are no publications describing the patient experience of NUTca and no specific PRO measures to assess the patient experience. We conducted mixed-methods research, including concept elicitation interviews, cognitive debriefing, and quantitative data analyses, to fill this evidence gap and describe challenges and solutions in the context of NUTca.MethodsAs published previously, our conceptualization of NUTca was based on elicitation interviews with 27 participants (n = 10 patients; n = 17 caregivers) using a semi-structured format; this framework formed the basis for a bolt-on strategy to develop a bespoke PRO measure based on the EORTC QLQ-C30, supplemented by targeted items from the EORTC Item Library and new items. In this publication, 20 participants were interviewed (n = 10 patients; n = 10 caregivers) to debrief items. Given the variety of tumor locations and related symptoms, and the small sample of patients providing responses to location-specific symptom items, we used response option endorsement frequencies to illuminate the variability of response for the concepts measured.ResultsThis study highlights the challenges in implementing patient-centric research to inform and develop PRO measures in rare diseases.ConclusionsOur mixed-methods research used pragmatic solutions to collect patient experience data and provides an evidence base to inform PCOM in clinical programs in this rapidly progressing rare cancer with high unmet need.
| S-EPMC8929465 | biostudies-literature
Project description:IntroductionA central instrument of multidisciplinary care is the multidisciplinary tumour conference (MTC). In MTCs, diagnosis and treatment of cancer patients are discussed, and therapy recommendations are worked out. As we found previously, patients participate in MTCs in some breast cancer centres in the state of North Rhine-Westphalia, Germany. However, studies on risks and benefits of patient participation have not provided substantiated findings. Therefore, the study's objective is to analyse differences between MTCs with and without patient participation.Methods and analysisThis is an exploratory mixed-methods study. MTCs in six breast and gynaecological cancer centres in North Rhine-Westphalia, Germany, are examined. MTCs will be conducted with and without patient participation. First, interviews with providers concentrating on the feasibility of patient participation and quality of decision-making will be carried out, transcribed and analysed by means of content analysis. Second, videotaped or audiotaped participatory observations in MTCs will be executed. Video data or transcribed audio data from video and audio recordings will be coded using the established "Observational Assessment Rating Scale" for MTCs and analysed by comparing centres with and without patient participation. Third, all patients will fill out a questionnaire before and after MTC, including questions on psychosocial situation, decision-making and expectations before and experiences after MTC. The questionnaire data will be analysed by means of descriptive and multivariate statistics and pre-post-differences within and between groups.Ethics and disseminationConsultation and a positive vote from the ethics committee of the Medical Faculty of the University of Cologne have been obtained. For all collected data, relevant data protection regulations will be adhered to. All personal identifiers from patients and providers will be pseudonymised, except video recordings. Dissemination strategies include a discussion with patients and providers in workshops about topics such as feasibility, risks and benefits of patient participation in MTCs.Trial registration numberDRKS00012552.
| S-EPMC6500308 | biostudies-literature
Project description:BACKGROUND:Lived experience research is conducted by people who have experience of mental health issues and is therefore better placed than more traditional research to illuminate participants' experiences. Findings that focus on identifying enablers of recovery from a lived experience perspective have the potential to assist people in their recovery process. However, this lived experience research is often difficult to find, access and interpret. We co-produced user-friendly and engaging resources to disseminate findings from six lived experience research studies. This paper seeks to answer the research questions: a) Did exposure to lived experience research increase hopefulness for participants?; and b) How else did interacting with lived experience research resources influence participants' lives? METHODS:Thirty-eight participants were introduced to four resources of their choosing by peer workers over a four-week period. The helpfulness of resources was evaluated using mixed methods, including a quasi-experimental analysis of change in hope, an anonymous survey and in-depth interviews. RESULTS:Findings indicated that the resources promoted hope, but that increases in hopefulness may not be seen immediately. Other impacts include that the resources: encouraged helpful activities; provided a positive experience; increased valued knowledge; encouraged people to reflect on their journey and think constructively about mental health issues; helped people to feel less alone; and assisted people to explain their situation to others. CONCLUSIONS:The research suggests the potential usefulness of lived experience research resources, presented in user-friendly formats, in the lives of people who experience mental health issues and implies a need to nurture this type of research.
| S-EPMC7507671 | biostudies-literature
Project description:BackgroundBarriers experienced by patients influence the uptake of colorectal cancer (CRC) screening. Prior research has quantified how often patients encounter these challenges but has generally not revealed their complex perspective and experience with barriers.PurposeThis mixed-methods study was conducted to understand current perspectives on CRC screening.MethodsA two-part, mixed-methods study was conducted of primary care patients recruited from Virginia Ambulatory Care Outcomes Research Network practices. First, in June-July 2005 a survey was mailed to 660 patients aged 50-75 years posing an open-ended question about "the most important barrier" to CRC screening. Second, beginning in October 2005, seven gender- and largely race-specific focus groups involving 40 patients aged 45-75 years were conducted. Beginning in October 2005, survey verbatim responses were coded and quantitatively analyzed and focus group transcripts were qualitatively analyzed.ResultsResponses to the open-ended survey question, answered by 74% of respondents, identified fear and the bowel preparation as the most important barriers to screening. Only 1.6% of responses cited the absence of physician advice. Focus group participants cited similar issues and other previously reported barriers, but their remarks exposed the intricacies of complex barriers, such as fear, lack of information, time, the role of physicians, and access to care. Participants also cited barriers that have little documentation in the literature, such as low self-worth, "para-sexual" sensitivities, fatalism, negative past experiences with testing, and skepticism about the financial motivation behind screening recommendations.ConclusionsMixed-methods analysis helps to disaggregate the complex nuances that influence patient behavior. In the present study, patients explained the web of influences on knowledge, motivation, and ability to undergo CRC screening, which clinicians and policymakers should consider in designing interventions to increase the level of screening.
| S-EPMC2946825 | biostudies-literature
Project description:BACKGROUND:Some hospitals' and health systems' websites report physician-level ratings and comments drawn from the Consumer Assessment of Healthcare Providers and Systems surveys. OBJECTIVE:The aim was to examine the prevalence and content of health system websites reporting these data and compare narratives from these sites to narratives from commercial physician-rating sites. METHODS:We identified health system websites active between June 1 and 30, 2016, that posted clinician reviews. For 140 randomly selected clinicians, we extracted the number of star ratings and narrative comments. We conducted a qualitative analysis of a random sample of these physicians' narrative reviews and compared these to a random sample of reviews from commercial physician-rating websites. We described composite quantitative scores for sampled physicians and compared the frequency of themes between reviews drawn from health systems' and commercial physician-rating websites. RESULTS:We identified 42 health systems that published composite star ratings (42/42, 100%) or narratives (33/42, 79%). Most (27/42, 64%) stated that they excluded narratives deemed offensive. Of 140 clinicians, the majority had composite scores listed (star ratings: 122/140, 87.1%; narrative reviews: 114/140, 81.4%), with medians of 110 star ratings (IQR 42-175) and 25.5 (IQR 13-48) narratives. The rating median was 4.8 (IQR 4.7-4.9) out of five stars, and no clinician had a score less than 4.2. Compared to commercial physician-rating websites, we found significantly fewer negative comments on health system websites (35.5%, 76/214 vs 12.8%, 72/561, respectively; P<.001). CONCLUSIONS:The lack of variation in star ratings on health system sites may make it difficult to differentiate between clinicians. Most health systems report that they remove offensive comments, and we notably found fewer negative comments on health system websites compared to commercial physician-rating sites.
| S-EPMC6456827 | biostudies-other
Project description:ObjectivesThis study aimed to examine the factors influencing patient safety behaviours and to explore health customers' experiences of patient participation in the healthcare system.DesignA mixed-method sequential explanatory design was employed using a survey and focus group interviews with health consumers.SettingThe study was conducted in South Korea using an online survey tool.ParticipantsSurvey data were collected from 493 Korean adults, aged 19 years or older, who had visited hospitals within the most recent 1 year. Focus group interviews were conducted in two groups of six participants each among those of the survey participants who agreed to participate in focus groups.Main outcome measuresThe survey measured the recognition of the importance of participation, extent of willingness to participate and experience of engaging in patient safety activities using a 4-point Likert scale. Qualitative data were collected through focus group interviews to explore health consumers' experience of patient participation in hospital care, and the data were analysed using content analysis.ResultsThe average score for experience of participation in patient safety behaviours (2.13±0.63) was found to be lower than those of recognition of the importance of participation (3.27±0.51) and willingness to participate (2.62±0.52). By integrating the results of the quantitative and qualitative data analysis, the factors associated with the experience of engaging in healthcare behaviour included patient-related factors, illness-related factors, factors involving relationship between patients and healthcare providers, and healthcare environment factors.ConclusionsTo improve patient participation, it is necessary to create a healthcare environment in which patients can speak comfortably and to provide an education programme reflecting the patients' needs. Also, healthcare providers must consider patients as partners for patient safety. Shared decision-making procedures and patient-centred care and patient safety policies should be established in hospitals.
| S-EPMC7170617 | biostudies-literature
Project description:BackgroundShared medical appointments (SMAs), or group visits, are a healthcare delivery method with the potential to improve chronic disease management and preventive care. In this review, we sought to better understand opportunities, barriers, and limitations to SMAs based on patient experience in the primary care context.MethodsAn experienced biomedical librarian conducted literature searches of PubMed, Cochrane Library, PsycINFO, CINAHL, Web of Science, ClinicalTrials.gov , and SSRN for peer-reviewed publications published 1997 or after. We searched grey literature, nonempirical reports, social science publications, and citations from published systematic reviews. The search yielded 1359 papers, including qualitative, quantitative, and mixed method studies. Categorization of the extracted data informed a thematic synthesis. We did not perform a formal meta-analysis.ResultsScreening and quality assessment yielded 13 quantitative controlled trials, 11 qualitative papers, and two mixed methods studies that met inclusion criteria. We identified three consistent models of care: cooperative health care clinic (five articles), shared medical appointment / group visit (10 articles) and group prenatal care / CenteringPregnancy® (11 articles).ConclusionsSMAs in a variety of formats are increasingly employed in primary care settings, with no singular gold standard. Accepting and implementing this nontraditional approach by both patients and clinicians can yield measurable improvements in patient trust, patient perception of quality of care and quality of life, and relevant biophysical measurements of clinical parameters. Further refinement of this healthcare delivery model will be best driven by standardizing measures of patient satisfaction and clinical outcomes.
| S-EPMC6615093 | biostudies-literature
Project description:BackgroundSocial contact survey data forms a core component of modern epidemic models: however, there has been little assessment of the potential biases in such data.MethodsWe conducted focus groups with university students who had (n = 13) and had never (n = 14) completed a social contact survey during the COVID-19 pandemic. Qualitative findings were explored quantitatively by analysing participation data.ResultsThe opportunity to contribute to COVID-19 research, to be heard and feel useful were frequently reported motivators for participating in the contact survey. Reductions in survey engagement following lifting of COVID-19 restrictions may have occurred because the research was perceived to be less critical and/or because the participants were busier and had more contacts. Having a high number of contacts to report, uncertainty around how to report each contact, and concerns around confidentiality were identified as factors leading to inaccurate reporting. Focus groups participants thought that financial incentives or provision of study results would encourage participation.ConclusionsIncentives could improve engagement with social contact surveys. Qualitative research can inform the format, timing, and wording of surveys to optimise completion and accuracy.
| S-EPMC7615368 | biostudies-literature
Project description:Adolescent cancer patients and their caregivers have demonstrated willingness to participate in invasive biological sampling, either for their own potential benefit or for research purposes. However, many malignancies occur primarily in prepubescent patients and there are no similar studies in this population. Our study objective was to assess the willingness of caregivers to consent to research studies involving invasive biological sampling in children ≤ 13 years of age. Participants completed a survey assessing their willingness to allow various procedures both with and without clinical benefit to their children. Most respondents were willing to allow additional blood draws regardless of potential benefit to their children (95.6% were willing when there would be benefits and 95.6% were willing when there would not). Although the overall willingness was lower with other hypothetical procedures, the majority of respondents were still willing to allow additional biopsies for research purposes. Caregivers of young children with cancer will allow their children to undergo additional invasive procedures for research purposes. This willingness decreased with more invasive procedures without potential direct benefit, but interest remained in more than half of participants. Caregivers for young patients with cancer should be approached for participation in future biological/correlative studies.
| S-EPMC9221797 | biostudies-literature
Project description:OBJECTIVES:To develop outcome measures to assess practical management of primary surgical wounds and patient experience. DESIGN:Mixed methods, including qualitative interviews and data extraction from published randomised controlled trials (RCTs). SETTING:Two university-teaching NHS hospitals and three district NHS hospitals in the South West and Midlands regions of England. PARTICIPANTS:Sixty-four patients and 15 healthcare professionals from abdominal general surgical specialities and obstetrics (caesarean section). METHODS:Measures were developed according to standard guidelines to identify issues relevant to patients' experiences of surgical wounds and dressings, including analysis of existing RCT outcomes and semi-structured interviews. These were written into provisional questionnaire items for a single outcome measure. Cognitive interviews with patients and healthcare professionals assessed face validity, acceptability and relevance. Findings from interviews were regularly shared with the study team who suggested amendments to modify and reword items to improve understanding before further iterative testing with patients and healthcare professionals. RESULTS:Analyses of existing RCT outcomes and interviews produced a total of 69 issues. Pretesting and iterative revision established the need for two separate measures. One measure addresses healthcare professionals' experience of wound management in two key areas: exudate and its impact, and allergic reactions to the dressing. The other measure addresses patients' experience of wounds in seven key areas: wound comfort, dressing removal, dressings to protect the wound, impact on daily activities, ease of movement, anxiety about the wound and satisfaction with dressing. Each measure took less than five?min to complete and both were understood and acceptable to patients and healthcare professionals. CONCLUSION:This in-depth study has developed two measures to assess practical management of primary surgical wounds and patient experience. Further work to test their validity, reliability and application to other settings is now required. TRIAL REGISTRATION NUMBER:HTA - 12/200/04; Pre-results.
| S-EPMC5719294 | biostudies-literature