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The effects of cancer research participation on patient experience: a mixed-methods analysis.

ABSTRACT: Patient-reported benefits of research participation have been described by study participants; however, many studies have small sample sizes or are limited to patient groups with poor prognoses. The purpose of this study was to explore the effects of research participation on patient experience using survey responses from a large, national sample of cancer patients (N = 66 462) and interviews with breast cancer patients attending a London trust. Multivariate logistic regression was used to investigate associations between taking part in research and positive patient experience. Based on our analysis, patients who participated in research were more likely to rate their overall care and treatment as 'very good/excellent' (ORadj :1.64, 95%CI: 1.53-1.76, P < 0.001) and to describe positive patient experiences, such as better access to non-standard care, better interactions with staff and being treated as an individual. However, findings from our interviews indicated that there was no common understanding of what constitutes cancer research and no clear delineation between research participation and standard care, from the patient perspective. Further work to explore how participation positively influences patient experience would be useful to develop strategies to improve care and treatment for all patients regardless of whether or not they choose, or have the opportunity, to take part in research.

SUBMITTER: McGrath-Lone L

PROVIDER: S-EPMC5095768 | biostudies-literature | 2016 Nov

REPOSITORIES: biostudies-literature

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The effects of cancer research participation on patient experience: a mixed-methods analysis.

McGrath-Lone L L Ward H H Schoenborn C C Day S S

European journal of cancer care 20150610 6

Patient-reported benefits of research participation have been described by study participants; however, many studies have small sample sizes or are limited to patient groups with poor prognoses. The purpose of this study was to explore the effects of research participation on patient experience using survey responses from a large, national sample of cancer patients (N = 66 462) and interviews with breast cancer patients attending a London trust. Multivariate logistic regression was used to inves ...[more]

PMID: 26094639

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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.

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.

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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.

Project description:IntroductionThe impact of patient centredness (PC) in healthcare has grown over the years. However, conceptualisations of PC are heterogeneous. Existing patient-reported measures of PC have shown inconsistencies and shortcomings. This impedes the comparison of results across studies. To foster PC, it is important to know which dimensions matter most to patients and to be able to measure its current extent from the patients' perspective. This study aims (1) to assess relevance of dimensions of PC from the patients' perspective, (2) to develop and psychometrically test a core set of patient-reported experience measures (PREMs) assessing PC and (3) to investigate the feasibility of implementation of this core set in routine healthcare.Methods and analysisA mixed-methods approach will be used. In phase 1, 200 patients will assess the relevance of the dimensions of PC in a Delphi study using a plain language description. In phase 2, the core set of PREMs will be developed through literature reviews, focus groups, key informant interviews and content validity ratings. The core set will be tested psychometrically in a cross-sectional study with 2000 inpatient and outpatients with different chronic conditions (ie, cancer, cardiovascular diseases, mental disorders and musculoskeletal disorders). In phase 3, the feasibility of implementation of the core set will be assessed through semistructured interviews with healthcare practitioners after piloting in routine care. Furthermore, an expert workshop will be held on how to foster implementation.Ethics and disseminationThe study will be carried out in accordance to the latest version of the Helsinki Declaration of the World Medical Association and principles of good scientific practice. The study was approved by the Ethics Committee of the Medical Association Hamburg, Germany (study ID: PV5724). The study results will be disseminated in scientific journals and through collaboration partners and plain language press releases.

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The effects of cancer research participation on patient experience: a mixed-methods analysis.

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The effects of cancer research participation on patient experience: a mixed-methods analysis.

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