scholarly journals Understanding Patient Outcomes to Develop a Multimobidity Adapted Patient-reported Outcomes Measure: A Qualitative Description of Patient and Provider Perspectives.

2020 ◽  
Author(s):  
Maxime Sasseville ◽  
Maud-Chrisitne Chouinard ◽  
Martin Fortin

Abstract Background: Understanding the outcomes of multimorbidity-adapted interventions from the perspective of patients and providers is essential to research and practice in this population, but is currently lacking. The purpose of this study was to describe the outcomes of patient-centred interventions for people with multimorbidity from the patients’ and providers’ perspectives.Methods: This study followed a qualitative descriptive design. Nine patients with multimorbidity and 18 healthcare professionals (nurses, general practitioners, nutritionists, and physical and respiratory therapists), participating in a multimorbidity-adapted intervention in primary care were recruited. Data was collected using semi-structured interviews with 12 open-ended questions. Triangulation of disciplines among interviewers, research team debriefing, data saturation assessment and iterative data collection and analysis ensured a rigorous research process.Results: Outcome constructs described by participants covered a wide range of themes and were grouped into seven outcome domains: Health Management, Functional Status, Physical Symptoms, Psychosocial Health, Health-oriented Behaviours, General Health and Health Services. The description of constructs by stakeholders provides valuable insight on how outcomes are experienced and worded by patients in that context.Conclusion: Stakeholders described a wide range of outcome constructs, which were relevant to and observable by patients and were in line with the clinical reality. The description provides a portrait of multimorbidity-adapted intervention outcomes that are significant for the selection and development of clinical research outcome measures.

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Maxime Sasseville ◽  
Maud-Christine Chouinard ◽  
Martin Fortin

Abstract Background Multimorbidity is a complex health situation that requires interventions tailored to patient needs; the outcomes of such interventions are difficult to evaluate. The purpose of this study was to describe the outcomes of patient-centred interventions for people with multimorbidity from the patients’ and healthcare providers’ perspectives. Methods This study followed a qualitative descriptive design. Nine patients with multimorbidity and 18 healthcare professionals (nurses, general practitioners, nutritionists, and physical and respiratory therapists), participating in a multimorbidity-adapted intervention in primary care were recruited. Data were collected using semi-structured interviews with 12 open-ended questions. Triangulation of disciplines among interviewers, research team debriefing, data saturation assessment and iterative data collection and analysis ensured a rigorous research process. Results Outcome constructs described by participants covered a wide range of themes and were grouped into seven outcome domains: Health Management, Physical Health, Functional Status, Psychosocial Health, Health-related Behaviours, General Health and Health Services. The description of constructs by stakeholders provides valuable insight on how outcomes are experienced and worded by patients. Conclusion Participants described a wide range of outcome constructs, which were relevant to and observable by patients and were in line with the clinical reality. The description provides a portrait of multimorbidity-adapted intervention outcomes that are significant for the selection and development of clinical research outcome measures.


2021 ◽  
Author(s):  
Maxime Sasseville ◽  
Maud-Christine Chouinard ◽  
Martin Fortin

Abstract Background: Multimorbidity is a complex health situation that requires interventions tailored to patient needs; the outcomes of such interventions are difficult to evaluate. The purpose of this study was to describe the outcomes of patient-centred interventions for people with multimorbidity from the patients’ and healthcare providers’ perspectives.Methods: This study followed a qualitative descriptive design. Nine patients with multimorbidity and 18 healthcare professionals (nurses, general practitioners, nutritionists, and physical and respiratory therapists), participating in a multimorbidity-adapted intervention in primary care were recruited. Data were collected using semi-structured interviews with 12 open-ended questions. Triangulation of disciplines among interviewers, research team debriefing, data saturation assessment and iterative data collection and analysis ensured a rigorous research process.Results: Outcome constructs described by participants covered a wide range of themes and were grouped into seven outcome domains: Health Management, Physical Health, Functional Status, Psychosocial Health, Health-related Behaviours, General Health and Health Services. The description of constructs by stakeholders provides valuable insight on how outcomes are experienced and worded by patients.Conclusion: Participants described a wide range of outcome constructs, which were relevant to and observable by patients and were in line with the clinical reality. The description provides a portrait of multimorbidity-adapted intervention outcomes that are significant for the selection and development of clinical research outcome measures.


2012 ◽  
Vol 7 (2) ◽  
pp. 81
Author(s):  
Lisa Shen

Objective – To determine the perceptions and information behavior of institutional repository (IR) end-users. Design – Semi-structured interviews. Setting – The interviews were conducted over the telephone. Subjects – Twenty end-users of five different IRs were interviewed for the study. Seventeen of the interviewees were recruited via recruitment forms the researchers placed on IR homepages and the other three interviewees were referred to researchers by IR managers. The interviewees’ academic backgrounds varied, including six undergraduates, four masters’ students, three doctorial students, five faculty, and two library or museum staff members. They represented disciplines in Arts and Humanities (5), Science and Health Sciences (10), and Social Sciences (5). Fifteen of the 20 interviewees were recruited through their own institution’s IR. All except two of the interviewees had used the IR for which they were recruited less than six times. Methods – Forty-three potential interviewees were recruited using web recruitment forms and IR manager recommendations. Researchers subsequently excluded 23 (53.5%) of the interviewees because they were primarily IR contributors rather than end-users, or could not be reached by phone. Twenty interviews ranging from 17 to 60 minutes were conducted between January and June 2008. The average interview time was 34 minutes. The recordings were transcribed then analyzed using qualitative data analysis software NVivo7. Coding categories were developed using both the original research questions and emerging themes from the actual transcripts. The final coding scheme had a Holsi Coefficient of Reliability of 0.732 for inter-coder reliability. Main Results – Researchers identified six common themes from the results: How do end-users characterize IRs? While most interviewees recognized that there is a relationship between the IR and its host institution, their understandings of the function and content of IRs varied widely. Interviewees likened the IRs they used to a varying array of information resources and tools, including databases, interface, server, online forums, and “static Wikipedia” (p. 27). Furthermore, six of the interviewees had never heard of the actual term “Institutional Repository” (p. 27). How do end-users access and use IRs? The most common methods of accessing IRs included selecting the link on their institution library’s website and Google searches. Many interviewees found out about the IRs they are using through recommendations from professors, peers, or library workshops. Other interviewees found out about particular IRs “simply because a Google search had landed them there” (p. 29). Interviewees’ preferred method of interacting with an IR were divided between browsing and keyword searching. However, these preferences may have been the result of an IR’s content or interface limitations. For instance, some interviewees expressed difficulties with browsing a particular IR, while another interviewee preferred browsing because “there wasn’t much going on” when searching for a specific topic of interest (p. 30). For what purposes do end-users use IRs? Interviewees commonly cited keeping abreast with research projects from their own university as a reason to access their institutions’ IRs. Student interviewees also used IRs to find examples of theses and dissertations they would be expected to complete. Identifying people doing similar work across different departments in the same institution for collaboration and networking opportunities was another unique purpose for using IRs. How do end-users perceive the credibility of information from IRs? Many interviewees perceived IRs to be more “trustworthy” than Google Scholar (p. 33). In their view, an IR’s credibility was assured by the reputation of its affiliated institution. On the other hand, many interviewees viewed a lack of comprehensiveness in content negatively when judging the credibility of an information source, which placed most IRs in a less favorable light. Additionally, researchers noted conflicting assumptions made by interviewees about IRs in the evaluation process for their content. Some interviewees believed all the content of an IR has been vetted through an approval process, while others distrusted all IR content that was not peer-reviewed. To what extent are end-users willing to return to an IR or recommend it to their peers? The great majority of interviews indicated they were likely to use IRs again in the future, and nearly all indicated they would recommend IRs to their peers. However, most interviewees did not know of any people using IRs. The few interviewees who did often knew of IR contributors rather than end-users. How do IRs fit into end-users’ information seeking behavior? Many interviewees noted that IRs provided them with content that was not commonly available through traditional publishing channels, including conference papers and dissertations. Others felt IRs made content available more quickly than other information sources. However, the results also suggested that most interviewees did not include IRs in their routine research process. Conclusion – This study identified current end-users’ perceptions of IRs and highlighted several areas for future IR development. Areas of improvement for IRs included intensifying publicity efforts; increasing content recruitment; making content recruitment policies more transparent; and improving appearance and navigation functionalities. The findings also suggested new directions for IR marketing, such as emphasizing on the networking and collaborating benefits of using IR.


2020 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Navjot Sandhu

PurposeThis paper aims to evaluate whether small marginal farmers in India have financial constraints and to examine how bank managers make lending decisions.Design/methodology/approachA survey approach was employed, using semi-structured questionnaires with a sample of 42 banks and 185 farmers from the state of Punjab in India. The questionnaires and semi-structured interviews were carried out on a one-to-one basis and in focus groups, and their responses were analysed from the supply (banks) and demand (farmers) side regarding access to finance.FindingsThe results indicate that the Indian farming sector is a complex and multidimensional one that has dependency on both the private and public sectors because of its national importance to varying degrees. Financial lending decisions are dependent upon several non-quantifiable factors (culture, caste, family size, education) and relational bank lending practices. Such practices have an adverse impact on bankable loan applications, and this gives rise to moral hazards. Relational banking and recommendations minimise default rates, but this does not minimise information asymmetry. Subjectivity in decision-making persists, which is compounded by underdeveloped financial markets for small farmers, giving rise to financial exclusion and negatively impacting on economic growth. To overcome information asymmetry, banks rely on the qualitative factors and an excessive level of collateral when making lending decisions. The findings provide valuable insight into how banks make lending decisions and evaluates a complex matrix of relationships between farmers and providers of debt finance in a developing economy such as India.Practical implicationsPolicy makers nationally and internationally could use the results of this research to develop relevant and targeted policies to promote the agricultural sector through adopting efficient provision of finance for farmers. A major contribution of this research is to provide a fundamental evaluation of the issues facing farmers in accessing finance in developing countries.Originality/valueThis study provides an original empirical insight into a sector of the economy that has implications for food security for a country. The study has relevance for a wide range of stakeholders and policy makers of both developed and emerging economies in the world.


2020 ◽  
Vol 267 (S1) ◽  
pp. 241-255
Author(s):  
F. M. P. Lucieer ◽  
R. Van Hecke ◽  
L. van Stiphout ◽  
S. Duijn ◽  
A. Perez-Fornos ◽  
...  

Abstract Objective To optimize the current diagnostic and treatment procedures for patients with bilateral vestibulopathy (BV), this study aimed to determine the complete spectrum of symptoms associated with BV. Method A prospective mixed-method study design was used. Qualitative data were collected by performing semi-structured interviews about symptoms, context, and behavior. The interviews were recorded and transcribed until no new information was obtained. Transcriptions were analyzed in consensus by two independent researchers. In comparison to the qualitative results, quantitative data were collected using the Dizziness Handicap Inventory (DHI), Hospital Anxiety and Depression Scale (HADS) and a health-related quality of life questionnaire (EQ-5D-5L). Results Eighteen interviews were transcribed. Reported symptoms were divided into fourteen physical symptoms, four cognitive symptoms, and six emotions. Symptoms increased in many situations, such as darkness (100%), uneven ground (61%), cycling (94%) or driving a car (56%). These symptoms associated with BV often resulted in behavioral changes: activities were performed more slowly, with greater attention, or were avoided. The DHI showed a mean score of severe handicap (54.67). The HADS questionnaire showed on average normal results (anxiety = 7.67, depression = 6.22). The EQ-5D-5L demonstrated a mean index value of 0.680, which is lower compared to the Dutch age-adjusted reference 0.839 (60–70 years). Conclusion BV frequently leads to physical, cognitive, and emotional complaints, which often results in a diminished quality of life. Importantly, this wide range of symptoms is currently underrated in literature and should be taken into consideration during the development of candidacy criteria and/or outcome measures for therapeutic interventions such as the vestibular implant.


2020 ◽  
Author(s):  
Sune Dueholm Müller ◽  
Morten Mathiasen ◽  
Louise Nordenhof ◽  
Daniel Jakobsen ◽  
Birgitte Mahler

BACKGROUND We report on a research project at the largest hospital in Denmark. The project investigates the value of using an mHealth application for the purpose of collecting patient-reported outcome data in support of health management. OBJECTIVE This article addresses the following research question: To what extent can the Kano model be used to elicit the information needs of patients as a basis for designing and evaluating a digital technology solution to meet those needs? METHODS The study is carried out using a mixed-methods research design that includes structured interviews based on the Kano model and semi-structured interviews grounded in extant literature to collect and analyze empirical data about patients' information needs. RESULTS Our study shows that semi-structured interviews with children and their parents provide both a valuable and necessary supplement to structured interviews with the children based on the Kano model when trying to understand both manifest and latent information needs. Moreover, the adapted Kano model offers an efficient and cost-effective means of eliciting patients' needs. CONCLUSIONS We are not only able to reproduce and confirm findings from previous studies, but we also show how the Kano model can be adapted to provide an efficient and cost-effective means of eliciting patients' needs.


Author(s):  
Kayleigh Garthwaite

Researching sensitive topics such as sickness and disability can encompass a wide range of demands that must be continually negotiated throughout the research process by both the researcher and research participants. Therefore, a studying the study approach is important when exploring the quality and ethical practice in qualitative research on sensitive issues with vulnerable populations. This becomes especially important within a UK context when considering the negative discourse surrounding the sickness benefits process in the UK. Drawing upon semi-structured interviews with 25 long-term sick and disabled benefits recipients in the UK, the study sought to uncover the health and illness narratives of long-term sickness benefits recipients. Within the presentation of methods that were used, a discussion of the methods used in conducting a “study of the study” are considered, providing an illustration of how to do this and what to do with the results of such a reflective piece. The challenges of doing such research are outlined, and the need for a reflective process surrounding the research process is emphasised. Finally, the approach of studying the study is an example of an illustration of how to adopt this approach when considering qualitative research with hard to reach groups.


Author(s):  
Leah Ayres ◽  
Lindi Pelkowitz ◽  
Perlin Simon ◽  
Sandra C. Thompson

Community services have played a significant role in supporting the psychosocial health and well-being of vulnerable populations during the SARS-CoV-2 (COVID-19) pandemic. To meet increased community needs, organisations were required to rapidly modify service provision, often using remote delivery systems. This in-depth study, undertaken early in the pandemic, explored staff and clients’ experiences of adapting to using telehealth to provide and access services in one regional social services agency. Semi-structured interviews from 15 staff and 11 clients from a regional not-for-profit agency in Western Australia were recorded and transcribed. Inductive coding, and thematic analysis identified eight subthemes, with experiences and perceptions of telehealth varying substantially among staff and client groups. Distinct benefits and challenges were associated with telehealth. Participants highlighted tensions and complexities and commented on the place of telehealth in the community service sector. Clients expressed the importance of relationships and communication. This study provides in-depth insights into the contextualised experiences of staff and clients during a time at which change was both enabled and necessary. The findings highlight the need for tailored service delivery; choice; client collaboration; ongoing staff training relating to telehealth; and guidelines specific to telehealth in the community service sector.


2018 ◽  
Vol 25 (4) ◽  
pp. 140-151
Author(s):  
Markus A. Wirtz ◽  
Matthias Morfeld ◽  
Elmar Brähler ◽  
Andreas Hinz ◽  
Heide Glaesmer

Abstract. The association between health-related quality of life (HRQoL; Short-Form Health Survey-12; SF-12) and patient-reported morbidity-related symptoms measured by the Patient Health Questionnaire-15 (PHQ-15) is analyzed in a representative sample of older people in the general German population. Data from 1,659 people aged 60 to 85 years were obtained. Latent class analysis identified six classes of patients, which optimally categorize clusters of physical symptoms the participants reported: musculoskeletal impairments (39.8%), healthy (25.7%), musculoskeletal and respiratory/cardiac impairments (12.8%), musculoskeletal and respiratory impairments, along with bowel and digestion problems (12.9%), general impairments (4.9%), and general impairments with no bowel and digestion problems (4.8%). The participants’ SF-12 Physical Health Scores (η2 = .39) and their Mental Health Scores (η2 = .28) are highly associated with these latent classes. These associations remain virtually identical after controlling for age. The results provide evidence that profiles of patient-reported physical impairments correspond strongly with reduced HRQoL independently from aging processes.


2020 ◽  
Author(s):  
Sissel Ravn ◽  
Henriette Vind Thaysen ◽  
Lene Seibaek ◽  
Victor Jilbert Verwaal ◽  
Lene Hjerrild Iversen

BACKGROUND Cancer survivors experience unmet needs during follow-up. Besides recurrence, a follow-up includes detection of late side effects, rehabilitation, palliation and individualized care. OBJECTIVE We aimed to describe the development and evaluate the feasibility of an intervention providing individualized cancer follow-up supported by electronic patient-reported outcomes (e-PRO). METHODS The study was carried out as an interventional study at a Surgical and a Gynecological Department offering complex cancer surgery and follow-up for advanced cancer. The e-PRO screened for a priori defined clinical important symptoms and needs providing individualized follow-up. We included following questionnaires in the e-PRO; the general European Organization for Research and Treatment of Cancer (EORTC) QLQ-C30 and the EORTC validated for colorectal and ovarian cancer patients. To support individualization, we included three prioritized issues of the patient’s preference in each e-PRO. The response-algorithm was aggregated based on the severity of the patient’s response. To ensure the sensitivity of the e-PRO, we performed semi-structured interviews with five patients. All clinicians (surgeons and gynecologists) performing the consultations reviewed the e-PRO. The evaluation was divided in two, 1)The feasibility was assessed by a)Patients’ response rate of the e-PRO, b)Number of follow-up visits documenting the use of e-PRO and c)Patients’ prioritized issues prior to the consultation(‘yes’ / ‘no’), and after the follow-up 2)Patients assessment of a)The need and purpose of the follow-up visit and b)the support provided during the follow-up visit. RESULTS In total, 187 patients were included in the study, of which 73%(n=136/187) patients responded to the e-PRO and were subjected to an individualized follow-up. The e-PRO was documented as applied in 79% of the follow-up visits. In total, 23% of the prioritized issues did not include a response. Stratified by time since surgery, significantly more patients did not fill out a prioritized issue had a follow-up >6 months since surgery. In total, 72 % follow-up visits were evaluated to be necessary in order to discuss the outcome of the CT scan, symptoms, and/or prioritized issues. Contrary, 19% of the follow-up visits were evaluated to be necessary only to discuss the result of the CT scan. A range from 19.3–56.3% of patients assessed the follow-up visit to provide support with respect to physical (42% of patients), mental (56%), sexual (19%) or dietary (27%) issues. Further, a range from 34–60% of the patients reported that they did not need support regarding physical (43% of patients), mental (34%), sexual (63%) or dietary (57%) issues. CONCLUSIONS An individualized follow-up based on e-PRO is feasible, and support most patients surgically treated for advanced cancer. However, results indicate that follow-up based on e-PRO may not be beneficial for all patients and circumstances. A thorough cost-benefit analysis may be warranted before implementation in routine clinic.


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