Inclusion Of Patient Perspective Research Articles

What should we be studying? Research priorities according to women and gender-diverse individuals with sexual interest/arousal disorder and their partners.

Sexual interest/arousal disorder (SIAD) is one of the most common sexual problems for women. In clinical research, there are often misalignments between the research priorities of patients and researchers, which can negatively impact care, and gender-diverse individuals are often excluded from research. Inclusion of patient perspectives when establishing research priorities may help to reduce these gaps; however, the research priorities of couples coping with SIAD remain unclear. Identify the research priorities of women and gender-diverse individuals with SIAD and their partners. In an online survey, couples coping with SIAD provided consent and responded to an open-ended question asking them to list the top 3 things they think are important for researchers to focus on related to couples coping with low sexual desire. A team-based content analysis was conducted to identify themes and their frequency of endorsement. An author-developed open-ended question. Analysis of 1279 responses (n = 667 from women and gender-diverse individuals with SIAD, n =612 from partners) resulted in our identification of 6 main themes: general causes, general treatment and coping, biophysiological, relationship, psychological, and environmental/contextual. Additionally, we identified 4 sub-themes within each of the latter 4 main themes: general, cause, treatment, and impact. For women and gender-diverse individuals with SIAD, their partners, and specifically gender-diverse participants, the 3 most endorsed themes were psychological general factors (24.3%, 21.2%, 24.3%; eg, stress and the link between SIAD and anxiety), relationship general factors (15.7%, 13.2%, 18.6%; eg, relationship length and communication on sexual desire), and biophysiological general factors (12.3%, 12.4%, 14.3%; eg, research on medications and hormones). Clinical researchers should consider the research priorities of couples coping with SIAD to ensure their work aligns with the needs of the affected population. This study is the first to identify the research priorities of both women and gender-diverse individuals with SIAD and their partners. Most participants identified as heterosexual, North American, and of middle to high socioeconomic status; results may not generalize. Responses were sometimes brief and/or vague; interpretation of these responses was therefore limited and may have required more contextual information. Findings suggest that women and gender-diverse individuals with SIAD, their partners, and gender-diverse participants have similar research priorities that are consistent with a biopsychosocial approach to research. Heterogeneity of responses across themes supports a multidisciplinary, patient-oriented approach to SIAD research.

PP11 Impact Of Qualitative Research In The Spanish Network Of Health Technology Assessment

IntroductionQualitative research is being increasingly integrated in heath technology assessments (HTA) within the Spanish Network of Agencies for Assessing National Health System Technologies and Performance (RedETS). Qualitative research methodological guidelines are given in RedETS HTA guidelines and the Patient Involvement Strategy. A specific methodological guideline to systematically review qualitative studies was published in 2007 and is pending its update. The impact of their implementation is unknown. The aim of this work is to analyze the techniques, impact and reporting of qualitative research (primary and secondary) in HTAs.MethodsA manual search of the HTAs published in the last 5 years in RedETS was conducted to locate assessments that include qualitative research. To ensure a complete identification, RedETS agencies and units were consulted to provide information about the assessments that have used qualitative techniques in their development over the past 5 years. A content analysis of the selected assessments was conducted to analyze the techniques, impact and reporting of qualitative research in HTA.ResultsIn the past five years, focus groups, semi-structured interviews, evidence synthesis of observational studies including qualitative studies have been used and integrated in HTA in RedETS. Most of them have been linked to patient involvement facilitation or the inclusion of patient perspectives in HTA. Qualitative research has been used to analyze patient’s experiences and values, to elicit and select important outcome measures for patients, to research for barriers-facilitators for technology implementation and to inform evidence to decision frameworks.ConclusionsQualitative primary and secondary research is being used in HTA in Spain. It is mainly linked to patient involvement strategies both to elicit patient perspectives directly or to collect patient-based evidence. The impact of qualitative research in HTA is broad and diverse, extending from the scope of the assessments to the drafting of the recommendations.

Patient-reported outcomes in Canadian cancer research.

These days, medical researchers may take the inclusion of patient perspectives in clinical science for granted, but it was the result of a long, multifaceted process that unfolded over several decades.[1][1] In this article, I explore 1 aspect of the incorporation of patient perspectives into

Evaluation of patient involvement strategies in health technology assessment in Spain: the viewpoint of HTA researchers.

The Spanish Network of Agencies for Assessing National Health System Technologies and Performance (RedETS) defined a patient involvement (PI) framework for health technology assessment (HTA) activities in 2016. The aim of this study is to evaluate the process and impact of those PI initiatives that were implemented in the first year following the publication of this new framework. A survey was sent to those HTA researchers who implemented PI in RedETS projects. Responses were reviewed by two authors. An adapted thematic analysis was performed and the results were later discussed by all authors. Six responses from six agencies/units were analyzed. The objectives of PI initiatives were the following: inclusion of patient perspectives, preferences and values; elicitation of important health outcomes measures; and barriers, facilitators, or suggestions for implementation. Different methods were used for PI: surveys, focus groups, in depth interviews, and participation in an expert panel. Five main themes emerged: (i) challenges with the recruitment process, (ii) needs identified, (iii) impact of PI, (iv) lessons learned, and (v) suggestions for the future. PI initiatives within the RedETS framework were tailored to each HTA project, its specific goals and the individual needs and resources of each HTA agency. The results also pointed out how PI has a relevant impact that has enriched RedETS products providing key information on experiences, values, and preferences of patients, contributions that benefit the HTA and the process of drawing up recommendations. The main challenges were related to recruitment processes and capacity building.

'He should feel your pain': Patient insights on patient-provider communication in Rwanda.

BackgroundPatient–provider communication is an interpersonal interaction between a patient and a health care provider.ObjectiveThis study explored patients’ communication preferences and perceptions on what factors influence the patient–provider communication in primary health care settings in Rwanda.MethodsIn-depth semi-structured interviews with 15 individuals including 8 with limited literacy. A thematic inductive analysis was used.ResultsPatients valued communication with providers and expressed the need for interacting with caring, empathic providers who can share all the information they want and involve them in their own care. Health literacy and power issues were factors that may influence patient–provider communication. Patients with limited literacy appeared to rely highly on health care providers for making decisions about and managing their health care.ConclusionThe expressed preferences, including those of patients with limited literacy, aligned well with the patient-centred care model. There were indications of a power imbalance weighing on the provider’s side. Although patients with limited literacy were reliant on providers for decision-making, they were ready to be more involved in the care, suggesting a potential for improved patient involvement even for patients with paternalistic care preferences. These patients’ insights can impact policies and curricula to optimise clinical practice. Generated knowledge will contribute to the indispensable yet underdeveloped field of health communication in sub-Saharan Africa.Practice implicationsFindings call for more inclusion of patient perspectives in the patient–provider encounter. This could require more training of professionals and research on the topic, both in Rwanda and in other regions.

Person-centred medicines optimisation policy in England: an agenda for research on polypharmacy.

There has been growing support in England for a policy of medicines optimisation as a response to the rise of problematic polypharmacy. Conceptually, medicines optimisation differs from the medicines management model of prescribing in being based around the patient rather than processes and systems. This critical examination of current official and independent policy documents questions how central the patient is in them and whether relevant evidence has been utilised in their development. A documentary analysis of reports on medicines optimisation published by the Royal Pharmaceutical Society (RPS), The King's Fund and National Institute for Health and Social Care Excellence since 2013. The analysis draws on a non-systematic review of research on patient experiences of using medicines. Findings The reports varied in their inclusion of patient perspectives and person-centred care values, and in the extent to which they drew on evidence from research on patients' experiences of polypharmacy and medicines use. In the RPS report, medicines optimisation is represented as being a 'step change' from medicines management, in contrast to the other documents which suggest that it is facilitated by the systems and processes that comprise the latter model. Only The King's Fund report considered evidence from qualitative studies of people's use of medicines. However, these studies are not without their limitations. We suggest five ways in which researchers could improve this evidence base and so inform the development of future policy: by facilitating reviews of existing research; conducting studies of patient experiences of polypharmacy and multimorbidity; evaluating medicines optimisation interventions; making better use of relevant theories, concepts and tools; and improving patient and public involvement in research and in guideline development.

Facilitators and barriers of implementing enhanced recovery in colorectal surgery at a safety net hospital: A provider and patient perspective

Enhanced Recovery After Surgery (ERAS) pathways are known to decrease complications and duration of stay in colorectal surgery patients. However, it is unclear whether an ERAS pathway would be feasible and effective at a safety-net hospital. The aim of this study was to identify local barriers and facilitators before the adoption of an ERAS pathway for patients undergoing colorectal operations at a safety-net hospital. Semistructured interviews were conducted to assess the perceived barriers and facilitators before ERAS adoption. Stratified purposive sampling was used. Interviews were audiotaped, transcribed verbatim, and analyzed using content analysis. Analytic and investigator triangulation were used to establish credibility. Interviewees included 8 anesthesiologists, 5 surgeons, 6 nurses, and 18 patients. Facilitators identified across the different medical professions were (1) feasibility and alignment with current practice, (2) standardization of care, (3) smallness of community, (4) good teamwork and communication, and (5) caring for patients. The barriers were (1) difficulty in adapting to change, (2) lack of coordination between different departments, (3) special needs of a highly comorbid and socioeconomically disadvantaged patient population, (4) limited resources, and (5) rotating residents. Facilitators identified by the patients were (1) welcoming a speedy recovery, (2) being well-cared for and satisfied with treatment, (3) adequate social support, (4) welcoming early mobilization, and (5) effective pain management. The barriers were (1) lack of quiet and private space, (2) need for more patient education and counseling, and (3) unforeseen complications. Although limited hospital resources are perceived as a barrier to ERAS implementation at a safety-net hospital, there is strong support for such pathways and multiple factors were identified that may facilitate change. Inclusion of patient perspectives is critical to identifying challenges and facilitators to implementing ERAS changes focused on optimizing patient perioperative health and outcomes.

Bridging the gap between patient needs and quality indicators: a qualitative study with chronic heart failure patients.

BackgroundThe German National Disease Management Guideline (NDMG) on chronic heart failure (CHF) derived nine clinical quality indicators (QIs) to enable assessment of quality of health care in patients with CHF. These QIs epitomize an evidence-based and somatic point of view of guided treatment, but little is known about the experiences and views of patients with their guideline-based treatment across multiple health care sectors.ObjectiveThe purpose of this qualitative study was to explore patient perspectives on guided treatment of CHF across multiple health care sectors. Furthermore, it was investigated to what extent patient perspectives are represented by the QIs of the German NDMG.MethodsUsing a qualitative approach, semistructured interviews were carried out with 17 CHF patients. Interviews were audio-recorded and transcribed verbatim. Data were analyzed using qualitative content analysis.ResultsPatient-identified needs focused primarily on aspects like the doctor–patient relationship, communication, quality of individual-tailored information, and professional advice. Patients perceived shortcomings in processes of care such as communication and cooperation across health care sectors, especially at the transition between hospital and outpatient care.DiscussionFrom the patient perspectives, the QIs do represent relevant somatic and clinical aims for quality measurement. However, deficits were identified, especially related to communication and cooperation across health care sectors. Given the fact that the inclusion of patient perspectives in quality improvement processes provides an important contribution to patient-centered health care, possible approaches for QI development such as direct and indirect patient involvement or generic vs disease-specific patient-related QIs should be the subject of future discussions.

Measuring the Quality of Life of Patients with Cancer

What is quality of life? Clinical trials have long been dominated by clinically based endpoints, but research has proved that health-related quality of life (HRQoL) can only be captured accurately by patients themselves using patient-reported outcomes (PROs). The United States Food and Drug Administration defines PROs as the measurement of any aspect of a patient’s health status that comes directly from the patient, that is, a measurement taken without interpretation of the patient’s responses by a physician or anyone else. The EORTC QLQ-C30 is the most widely cancer specific HRQoL questionnaire used for PROs in the world. Developed in 1991 by the EORTC Quality of Life Group, it has been translated into more than 60 languages and has over 40 developed or under development cancer-specific modules. One of the key challenges faced is pooling data and performing meta-analyses of the results of closed trials. The EORTC Patient Reported Outcomes and Behavioural Evidence (PROBE) team is dedicated to the meta-analysis of EORTC randomised clinical trial quality of life results. During the last 5 years, pooled data have revealed important results, such as prognostic indicators of survival, which have informed clinical practice. This research shows how the patient perspective in palliative and curative EORTC trials has been considered of major importance. The inclusion of patient perspective in drug development shows that a more comprehensive HRQoL assessment has taken place over time as better instruments have become available. As clinicians, regulatory bodies and industry acknowledge the value of the patient perspective, we expect that EORTC will continue including HRQoL endpoints where appropriate.

Framing Food and Diabetes

To better elucidate the experiences and perspectives of youth and families living with type 1 diabetes mellitus (T1D), we conducted survey research with 40 youth and their parents/caregivers. Youth were provided with disposable cameras and prompted to take 5 pictures that captured what diabetes meant to them accompanied by narratives explaining their photo choices. Demographic data were collected to examine possible variations in photos/representations, including gender, age, disease duration, socioeconomic status, race, and glycemic control (measured with glycated hemoglobin). Qualitative content analysis was conducted for photos and open-ended survey responses. Quantitative analysis included a comparison of means through Mann-Whitney U tests for statistical significance. In all, 68% of youth took at least 1 photograph of food, and 90% of parents/caregivers addressed food-specific issues, demonstrating 3 broad categories of representation: food as off limits, food as laborious, and food as exclusionary. The only demographic variable that proved to be significant was gender: male participants took more food-specific photos than their female counterparts (P ≤ .005). Food-specific issues signify challenging and negative aspects of living with T1D, and these experiences are particularly intense for male participants. The inclusion of patient perspectives through nontraditional methodologies such as photography could provide greater insight into adolescent perspectives.

Health-related quality of life assessment in EORTC cancer clinical trials.

6090 Background: Over the last three decades health-related quality of life (HRQOL) has become an important part of the randomised controlled trials (RCTs) conducted by the European Organisation for Research and Treatment of Cancer (EORTC). This review aims to undertake a descriptive database evaluation of all the HRQOL studies conducted in EORTC since 1980. Methods: The EORTC protocol database (n=785) was reviewed, restricting the search to between 1980 and 2011 (n=735). We investigated the number of HRQOL studies conducted in EORTC trials, the RCTs’ status and the use of HRQOL tools since 1980. Results: 157 protocols with HRQOL assessment were identified involving 70,903 patients. 73 studies ended as defined in the protocol; 27 studies closed early due to poor accrual; 17 are at the final analysis of the primary end point stage; 14 studies are still open to recruitment; 11 are closed to patient entry; and 15 new RCTs are pending activation with HRQOL. The majority of phase III (n=135) and phase II/III (n=9) RCTs have HRQOL as secondary endpoint. EORTC also conducted a number of large scale field studies (n=11), where HRQOL was the primary endpoint. During the early period of 1980 to 1989 HRQOL was assessed in 12 EORTC RCTs by using a small number of HRQOL items, but from 1990 to 2000, HRQOL was assessed in 97 RCTs using more comprehensive HRQOL tools. Between 2001 and 2011 the number of RCTs with HRQOL was 48. The EORTC clinical groups with the most RCTs containing HRQOL were Radiation Oncology (n=22), Genito-Urinary (n=20), Gynaecological (n=16), Breast Cancer (n=16), Lung (n=13), Gastrointestinal, (n=13) and Brain (n=10). The EORTC HRQOL tools were used in 90% of the trials, with other validated tools being used when required. Conclusions: Our review of EORTC RCTs has shown how patient perspective has been constantly considered of major importance in oncology during the last three decades. The inclusion of patient perspective in drug development shows that a more comprehensive HRQOL assessment has taken place over time as better instruments have become available. As the positive value of patient perspective grows to clinicians, regulatory bodies and industry, we expect that EORTC will continue its support by including HRQOL endpoints where appropriate.