Publications by authors named "Dominik Ose"

67 Publications

The Disruptiveness of Itchiness from Psoriasis: A Qualitative Study of the Impact of a Single Symptom on Quality of Life.

J Clin Aesthet Dermatol 2021 Jun 1;14(6):42-48. Epub 2021 Jun 1.

Drs. Taliercio, Beshay, Rhoads, and Secrest, Ms. Snyder, and Ms. Webber are with the Department of Dermatology at the University of Utah in Salt Lake City, Utah.

Background: Pruritus is the most common symptom of psoriasis, with a significant impact on patient quality of life. In spite of this, the severity, persistence, and overall impact of itchiness has only been rarely formally assessed during standard psoriasis clinic visits. Objectives: We sought to understand the far-reaching impacts of itchiness on the lives of those with psoriasis and their families.

Methods: We conducted a qualitative study with five focus groups and 10 semi-structured interviews from August 2018 to January 2019. We enrolled 25 individuals with a diagnosis of at least moderate plaque psoriasis and 11 family members (primarily significant others). Views and experiences were analyzed thematically via content analysis.

Results: Itchiness considerably impacts those with plaque psoriasis and their families. Our narrative analysis produced three main themes relating to itchiness: the triggers of itchiness, including climate, emotions, and behaviors; the physical consequences of itchiness, including disruption of emotional well-being, sleep disturbance, and daily activities; and the prevention and treatment strategies used to alleviate itchiness.

Conclusion: Itchiness impacts the quality of life in those with psoriasis and their family members. We strongly urge clinicians to inquire about and monitor the severity and impact of itchiness in psoriasis patients.
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8594538PMC
June 2021

Pharmacologic Management of Agitation in Patients with Dementia.

Am Fam Physician 2021 07;104(1):91-92

University of Oklahoma, Tulsa, OK, USA.

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July 2021

Understanding the Prevalence of Prediabetes and Diabetes in Patients With Cancer in Clinical Practice: A Real-World Cohort Study.

J Natl Compr Canc Netw 2021 03 10;19(6):709-718. Epub 2021 Mar 10.

2Huntsman Cancer Institute, and.

Background: This study aimed to understand the prevalence of prediabetes (preDM) and diabetes mellitus (DM) in patients with cancer overall and by tumor site, cancer treatment, and time point in the cancer continuum.

Methods: This cohort study was conducted at Huntsman Cancer Institute at the University of Utah. Patients with a first primary invasive cancer enrolled in the Total Cancer Care protocol between July 2016 and July 2018 were eligible. Prevalence of preDM and DM was based on ICD code, laboratory tests for hemoglobin A1c, fasting plasma glucose, nonfasting blood glucose, or insulin prescription.

Results: The final cohort comprised 3,512 patients with cancer, with a mean age of 57.8 years at cancer diagnosis. Of all patients, 49.1% (n=1,724) were female. At cancer diagnosis, the prevalence of preDM and DM was 6.0% (95% CI, 5.3%-6.8%) and 12.2% (95% CI, 11.2%-13.3%), respectively. One year after diagnosis the prevalence was 16.6% (95% CI, 15.4%-17.9%) and 25.0% (95% CI, 23.6%-26.4%), respectively. At the end of the observation period, the prevalence of preDM and DM was 21.2% (95% CI, 19.9%-22.6%) and 32.6% (95% CI, 31.1%-34.2%), respectively. Patients with myeloma (39.2%; 95% CI, 32.6%-46.2%) had the highest prevalence of preDM, and those with pancreatic cancer had the highest prevalence of DM (65.1%; 95% CI, 57.0%-72.3%). Patients who underwent chemotherapy, radiotherapy, or immunotherapy had a higher prevalence of preDM and DM compared with those who did not undergo these therapies.

Conclusions: Every second patient with cancer experiences preDM or DM. It is essential to foster interprofessional collaboration and to develop evidence-based practice guidelines. A better understanding of the impact of cancer treatment on the development of preDM and DM remains critical.
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http://dx.doi.org/10.6004/jnccn.2020.7653DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8691450PMC
March 2021

Preoperative A1C Threshold in Patients with Diabetes.

Am Fam Physician 2021 06;103(11):693-694

University of Utah, Salt Lake City, UT, USA.

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June 2021

Healthcare planning across healthcare sectors in Baden-Wuerttemberg, Germany: a stakeholder online survey to identify indicators.

BMC Health Serv Res 2021 May 27;21(1):510. Epub 2021 May 27.

Department of General Practice & Health Services Research, Heidelberg University Hospital, Im Neuenheimer Feld 130.3, 69120, Heidelberg, Germany.

Background: Stakeholders in the German state of Baden-Wuerttemberg agreed upon the central aims for healthcare planning. These include a focus on geographical districts; a comprehensive, cross-sectoral perspective on healthcare needs and services; and use of regional data for healthcare planning. Therefore, healthcare data at district level is needed. Nevertheless, decision makers face the challenge to make a selection from numerous indicators and frameworks, which all have limitations or do not well apply to the targeted setting. The aim of this study was to identify district level indicators to be used in Baden-Wuerttemberg for the purpose of cross-sectoral and needs-based healthcare planning involving stakeholders of the health system.

Methods: A conceptual framework for indicators was developed. A structured search for indicators identified 374 potential indicators in indicator sets of German and international institutions and agencies (n = 211), clinical practice guidelines (n = 50), data bases (n = 35), indicator databases (n = 25), published literature (n = 35), and other sources (n = 18). These indicators were categorised according to the developed framework dimensions. In an online survey, institutions of various stakeholders were invited to assess the relevance of these indicators from December 2016 until January 2017. Indicators were selected in terms of a median value of the assessed relevance.

Results: 22 institutions selected 212 indicators for the five dimensions non-medical determinants of health (20 indicators), health status (25), utilisation of the health system (34), health system performance (87), and healthcare provision (46).

Conclusions: Stakeholders assessed a large number of indicators as relevant for use in healthcare planning on district level.

Trial Registration: Not applicable.
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http://dx.doi.org/10.1186/s12913-021-06514-0DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8157415PMC
May 2021

Which detoxification regimens are effective for alcohol withdrawal syndrome?

J Fam Pract 2021 03;70(2):E16-E17

Family Physicians Inquiries Network.

BENZODIAZEPINES REMAIN THE FIRST-LINE REGIMEN FOR ALCOHOL WITHDRAWAL SYNDROME (AWS) AND ARE THE ONLY CLASS MORE EFFECTIVE THAN PLACEBO FOR REDUCING SEIZURE (STRENGTH OF RECOMMENDATION [SOR]: B, BASED ON 3 MEDIUM-QUALITY RANDOMIZED CONTROLLED TRIALS [RCTS]). ANTICONVULSANTS ARE NO MORE EFFECTIVE THAN PLACEBO AT REDUCING SEIZURES (SOR: B, BASED ON 10 MODERATE-QUALITY RCTS). GABAPENTIN REDUCES WITHDRAWAL SYMPTOMS AND IS LESS SEDATING THAN BENZODIAZEPINES (SOR: B, BASED ON 1 MEDIUM-QUALITY RCT). CARBAMAZEPINE ALSO REDUCES WITHDRAWAL SYMPTOMS (SOR: B, BASED ON 3 RCTS). EVIDENCE OF BENZODIAZEPINE SUPERIORITY TO OTHER DRUGS WITH RESPECT TO SAFETY IS LACKING (SOR: A, BASED ON A META-ANALYSIS).
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http://dx.doi.org/10.12788/jfp.0157DOI Listing
March 2021

Information sharing via electronic health records in team-based care: the patient perspective.

Fam Pract 2021 07;38(4):468-472

University of Utah, Department of Family and Preventive Medicine, Division of Family Medicine, Salt Lake City, USA.

Purpose: Team-based care offers potential improvements in communication, care coordination, efficiency, value and satisfaction levels of both patients and providers. However, the question of how to balance the need for information in team-based care without disregarding patient preferences remains unanswered. This study aims to determine patients' perceptions of information sharing via electronic health records (EHRs) in team-based care.

Methods: This qualitative study used a focus group approach. Participants were primary care patients and representative members from minority groups (ethnic, racial or social). Audio recordings of the sessions were transcribed and coded consistent with thematic analyses.

Results: The analysis revealed that the participants in the focus groups had diverging levels of understanding and personal beliefs around five major themes including (i) patient's understanding of the care team, (ii) perceptions of electronic health records, (iii) defining basic health care information, (iv) sharing information with the health care team and (v) patient's trust in doctors and the health care system.

Conclusions: The participants of our focus groups value team-based care and view patients as a critical part of those teams. With respect to electronic health records, our participants recognized their importance but had concerns about inaccuracies and limited options to correct errors in their records. In general, participants were willing to share basic information but disagreed about what information should be considered to be basic. Moreover, based on their trust and comfort level, many participants want to control what information is recorded and shared in the electronic health record.
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http://dx.doi.org/10.1093/fampra/cmaa145DOI Listing
July 2021

A New Method for Structured Integration of User Needs in Two Health Technology Development Projects: Action Sheets.

Inform Health Soc Care 2021 Jun 6;46(2):113-125. Epub 2021 Jan 6.

Department of General Practice and Health Services Research, University Hospital Heidelberg, Heidelberg, Germany.

An early integration of users and stakeholders is needed for a successful innovation process. Nonetheless, the integration of users is often hard to realize - especially when dealing with persons with chronic diseases. In addition, patients or users in general often are not able to formulate the requirements in a technical manner. Therefore, even if user requirements are collected, it is not certain that the developers know or understand 'what is really wanted'. To overcome these 'gaps', we have developed so-called Action Sheets (AS). This article presents the use of AS in two projects: the development of health technologies for people with cancer (INFOPAT) and dementia (QuartrBack). Depending on the project context, group sessions were conducted with different stakeholders to identify the needs of (potential) users. Within the INFOPAT project, ten focus groups were conducted with patients, physicians and other healthcare professionals. In QuartrBack stakeholders like e.g. care professionals, technical assistance organizations and citizens participated in two focus groups and three world cafés. Their requirements were then 'fed' into the technology development by the use of AS. AS appear to be a promising tool to make user needs based on social values more tangible and implementable into technology development processes. In addition, it shows up that four phases seem to be necessary for transferring identified user and stakeholder needs into AS, which can therefore be seen as essential to translate non-technically formulated requirements into technically feasible ones. The case study shows as lessons learned that despite the successful integration of user needs, context-sensitive adjustments are still necessary.
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http://dx.doi.org/10.1080/17538157.2020.1865968DOI Listing
June 2021

Use of a Feedback Survey as a Part of a Wellness Champions Program to Improve Academic Faculty Satisfaction and Burnout: Implications for Burnout in Academic Health Centers.

Glob Adv Health Med 2020 27;9:2164956120973635. Epub 2020 Nov 27.

Department of Family and Preventive Medicine, University of Utah, Salt Lake City, Utah.

Background: Faculty and trainee well-being at academic medical centers is a nationwide concern. In response, the University of Utah Health created a system-wide provider wellness program that used individual faculty champions who were empowered to 1) examine the unique needs of their department or division using a lens of quality improvement, 2) design projects to address well-being, and 3) measure impact of projects addressing well-being. One team used a feedback tool to attempt to improve the well-being of Family Medicine faculty by better understanding challenges and developing a roadmap for action.

Objective: Evaluate the effectiveness of an anonymous feedback tool on faculty well-being.

Methods: The Division of Family Medicine developed and implemented a quarterly anonymous faculty survey to facilitate an ongoing improvement process for faculty wellness in 2016. The faculty survey identified thematic concerns, which were used to develop constructive solutions and systemic changes.

Results: A closed loop feedback structure provided rich faculty input into impacts on burnout and professional well-being. Sense of control (good to optimal) over workload among faculty increased significantly (p = 0.011) from 10% to 42% over one year exhibiting a large effect size (Cohen's h = 0.751). Faculty burnout, using a single item emotional exhaustion question validated to the Maslach Burnout Inventory, was reduced from 48% to 25% showing a medium effect size (Cohen's h = 0.490 with p = 0.097). Work related stress was reduced from 72% to 50% demonstrating clinical significance (Cohen's h = 0.465) but not statistical significance (p = 0.154)-an effect which was more noticeable when comparing means between years (Cohen's d=0.451with p = 0.068). Response rate was 100% in 2016 (29/29) and 92% (23/25) in 2017.

Conclusion: This faculty survey, which has since been adopted by other groups at the University of Utah, could help improve well-being in a variety of health care professions.
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http://dx.doi.org/10.1177/2164956120973635DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7705289PMC
November 2020

A Longitudinal Curriculum for Quality Improvement, Leadership Experience, and Scholarship in a Family Medicine Residency Program.

Fam Med 2020 09;52(8):570-575

Department of Family and Preventive Medicine, University of Utah, Salt Lake City, UT.

Background And Objectives: The Accreditation Council for Graduate Medical Education (ACGME) requires all residents be trained in quality improvement (QI), and that they produce scholarly projects. While not an ACGME requirement, residents need leadership skills to apply QI knowledge. We developed the Skills-based Experiential Embedded Quality Improvement (SEE-QI) curriculum to integrate training in QI, leadership, and scholarship.

Methods: The University of Utah Family Medicine Residency Program began using the novel curriculum in 2012. The aim of the curriculum is to tie didactic teaching in quality improvement, leadership, and scholarship with skills application on multidisciplinary QI teams. Coaching for resident leaders is provided by faculty. Third-year resident leaders prepare academic presentations. Results of the ACGME Practice-Based Learning and Improvement (PBLI) 3 scores and number of scholarship presentations are described as a measure of efficacy.

Results: Two cohorts of residents completed the curriculum and all competency assessments. The average initial and final competency scores for competency PBLI-3 showed improvement and the average final competency for each cohort was above the proficient level. The residency requirements for QI scholarship did not change with introduction of the curriculum, but the amount of optional curricular QI scholarship and independent QI scholarship increased.

Conclusions: The SEE-QI curriculum resulted in a high level of resident QI competency, opportunity for leadership training, and an increase in scholarship. We studied the results of this curriculum at one institution. Efforts to tie QI, leadership, and scholarship training should be evaluated at other programs.
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http://dx.doi.org/10.22454/FamMed.2020.679626DOI Listing
September 2020

Diabetes, Body Fatness, and Insulin Prescription Among Adolescents and Young Adults with Cancer.

J Adolesc Young Adult Oncol 2021 04 29;10(2):217-225. Epub 2020 Jul 29.

Huntsman Cancer Institute, Salt Lake City, Utah, USA.

Rates of obesity and obesity-related health consequences, including type 2 diabetes (T2D) and cancer, continue to rise. While cancer patients are at an increased risk of developing T2D, the prevalence of T2D and insulin prescription among young patients with cancer remains unknown. Using the Total Cancer Care Study cohort at Huntsman Cancer Institute (Salt Lake City, UT), we identified individuals age 18-39 years at cancer diagnosis between 2009 and 2019. Multivariable logistic regression was used to investigate associations between body mass index (BMI) with insulin prescription within 1 year of cancer diagnosis. In total, 344 adolescents and young adults (AYAs) were diagnosed with primary invasive cancer. Within this cohort, 19 patients (5.5%) were ever diagnosed with T2D, 48 AYAs ever received an insulin prescription (14.0%), and 197 were overweight or obese (BMI: 25+ kg/m) at cancer diagnosis. Each kg/m unit increase in BMI was associated with 6% increased odds of first insulin prescription within 1 year of cancer diagnosis among AYAs, even after adjustment for age, sex, smoking history, marital status, glucocorticoid prescription, and cancer treatments (odds ratio = 1.06, 95% confidence interval 1.02-1.11;  = 0.005). One in every 18 AYAs with cancer ever had T2D, 1 in 7 AYA patients with cancer ever received an insulin prescription, and higher BMI was associated with increased risk of insulin prescription within a year of cancer diagnosis among AYAs. Understanding the incidence of T2D and insulin prescription/use is critical for short-term and long-term clinical management of AYAs with cancer.
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http://dx.doi.org/10.1089/jayao.2020.0071DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8064923PMC
April 2021

Caregivers' role in using a personal electronic health record: a qualitative study of cancer patients and caregivers in Germany.

BMC Med Inform Decis Mak 2020 07 13;20(1):158. Epub 2020 Jul 13.

Department of General Practice and Health Services Research, University Hospital Heidelberg, Im Neuenheimer Feld 130.3, 69120, Heidelberg, Germany.

Background: Particularly in the context of severe diseases like cancer, many patients wish to include caregivers in the planning of treatment and care. Many caregivers like to be involved but feel insufficiently enabled. This study aimed at providing insight into patients' and caregivers' perspectives on caregivers' roles in managing the patient portal of an electronic personal health record (PHR).

Methods: A descriptive qualitative study was conducted comprising two study phases: (1) Usability tests and interviews with patients with cancer and caregivers (2) additional patient interviews after a 3-month-pilot-testing of the PHR. For both study parts, a convenience sample was selected, focusing on current state of health and therapy process and basic willingness to participate and ending up with a mixed sample as well as saturation of data. All interviews were audio-recorded, pseudonymized, transcribed verbatim and qualitatively analyzed.

Results: Two main categories emerged from qualitative data: 'Caregivers' role' and 'Graduation of access rights' - consisting of four subcategories each. The interviewed patients (n = 22) and caregivers (n = 9) felt that the involvement of caregivers is central to foster the acceptance of a PHR for cancer patients. However, their role varied from providing technical support to representing patients, e.g. if the patient's state of health made this necessary. Heterogeneous opinions emerged regarding the question whether caregivers should receive full or graduated access on a patient's PHR.

Conclusions: In order to support the patient and to participate in the care process, caregivers need up-to-date information on the patient's health and treatment. Nevertheless, some patients do not want to share all medical data with caregivers, which might strain the patient-caregiver relationship. This needs to be considered in development and implementation of personal health records. Generally, in the debate on patient portals of a personal health record, paying attention to the role of caregivers is essential. By appreciating the important relationship between patients and caregivers right from the beginning, implementation, of a PHR would be enhanced.

Trial Registration: ISRCTN85224823 . Date of registration: 23/12/2015 (retrospectively registered).
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http://dx.doi.org/10.1186/s12911-020-01172-4DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7358207PMC
July 2020

Prognostic Significance of Patient-Reported Outcomes in Cancer.

JCO Oncol Pract 2020 04 9;16(4):e313-e323. Epub 2020 Jan 9.

Huntsman Cancer Institute, University of Utah, Salt Lake City, UT.

Purpose: Performance status (PS), an established prognostic surrogate of cancer survival, is a physician-synthesized metric of patient symptoms and mobility that is prone to bias and subjectivity. The National Cancer Institute (NCI) Patient-Reported Outcomes Measurement Information System-Cancer (PROMIS-Ca) Bank, a patient-centric patient-reported outcome (PRO) evaluation of physical function (PF), fatigue, depression, anxiety, and pain, shares subject matter with PS and, therefore, may also be prognostic while eliminating physician interpretation.

Methods: Patients at Huntsman Cancer Institute were assessed using the NCI PROMIS-Ca Bank. Using tablets at routine office visits, PF, fatigue, depression, anxiety, and pain scores were collected from patients with advanced melanoma, non-small-cell lung cancer, colorectal cancer, and breast cancer. A PRO score collected at a single time point within 6 months of metastatic diagnosis for each patient was merged with curated clinical outcome data. The association of PROs, overall survival (OS), and hospitalization-free survival (HFS) were assessed in multivariable analysis that included sex and cancer type.

Results: Two hundred eighty-two complete sets of patient data were available for analysis. All 5 PRO domains were strongly prognostic of OS and HFS. While the PRO domains were interrelated with moderate to strong correlations (0.40-0.79), multivariable regression suggested that PF was most strongly associated with the clinical outcomes of OS ( < .001) and HFS ( < .001).

Conclusion: NCI PROMIS-Ca PROs may be prognostic of both cancer survival and likelihood of hospitalization. Future prospective studies are needed for all major prognostic factors to fully understand the independent prognostic value of PROs.
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http://dx.doi.org/10.1200/JOP.19.00329DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7846047PMC
April 2020

Digitalizing Health Services by Implementing a Personal Electronic Health Record in Germany: Qualitative Analysis of Fundamental Prerequisites From the Perspective of Selected Experts.

J Med Internet Res 2020 01 29;22(1):e15102. Epub 2020 Jan 29.

Department of General Practice and Health Services Research, University Hospital Heidelberg, Heidelberg, Germany.

Background: The implementation of a personal electronic health record (PHR) is a central objective of digitalization policies in the German health care system. Corresponding legislation was passed with the 2015 Act for Secure Digital Communication and Applications in the Health Sector (eHealth Act). However, compared with other European countries, Germany still lags behind concerning the implementation of a PHR.

Objective: In order to explore potential barriers and facilitators for the adoption of a PHR in routine health care in Germany, this paper aims to identify policies, structures, and practices of the German health care system that influence the uptake and use of a PHR.

Methods: A total of 33 semistructured interviews were conducted with a purposive sample of experts: 23 interviews with different health care professionals and 10 interviews with key actors of the German health care system who were telematics, eHealth, and information technology experts (eHealth experts). The interviews were transcribed verbatim and subjected to a content analysis.

Results: From the expert perspective, a PHR was basically considered desirable and unavoidable. At the same time, a number of challenges for implementation in Germany have been outlined. Three crucial themes emerged: (1) documentation standards: prevailing processes of the analog bureaucratic paper world, (2) interoperability: the plurality of actors and electronic systems, and (3) political structure: the lack of clear political regulations and political incentive structures.

Conclusions: With regard to the implementation of a PHR, an important precondition of a successful digitalization will be the precedent reform of the system to be digitized. Whether the recently passed Act for Faster Appointments and Better Care will be a step in the right direction remains to be seen.
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http://dx.doi.org/10.2196/15102DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7016629PMC
January 2020

Long-term diabetes risk among endometrial cancer survivors in a population-based cohort study.

Gynecol Oncol 2020 01 12;156(1):185-193. Epub 2019 Dec 12.

Huntsman Cancer Institute, Salt Lake City, UT, USA; Division of Public Health, Department of Family and Preventive Medicine, University of Utah School of Medicine, Salt Lake City, UT, USA; Utah Cancer Registry, Salt Lake City, UT, USA. Electronic address:

Objective: The majority of endometrial cancer patients are overweight or obese at cancer diagnosis. Obesity is a shared risk factor for both endometrial cancer and diabetes, but it is unknown whether endometrial cancer patients have increased diabetes risks. The aim of our study was to investigate diabetes risk among endometrial cancer patients.

Methods: Endometrial cancer patients diagnosed between 1997 and 2012 in Utah (n = 2,314) were identified. Women from the general population (n = 8,583) were matched to the cancer patients on birth year and birth state. Diabetes diagnoses were identified from electronic medical records and statewide healthcare facility databases. Cox proportional hazards models were used to estimate hazard ratios for diabetes after cancer diagnosis.

Results: Endometrial cancer survivors had a significantly higher risk of type II diabetes when compared to women from the general population in the first year after cancer diagnosis (HR = 5.22, 95% CI = 4.05, 6.71), >1-5 years after cancer diagnosis (HR = 1.67, 95% CI = 1.31, 2.12), and >5 years after cancer diagnosis (HR = 1.65, 95% CI = 1.29, 2.11). Endometrial cancer patients who were obese at cancer diagnosis had a three-fold increase in type II diabetes risk (HR = 2.99, 95%CI = 2.59, 3.45). Although endometrial cancer patients diagnosed at distant stage had a higher risk of diabetes, cancer treatment did not appear to contribute to any diabetes risks.

Conclusions: In conclusion, endometrial cancer survivors had a higher risk of diabetes than women in the general population. These results suggest that long term monitoring for diabetes is indicated for endometrial cancer survivors.
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http://dx.doi.org/10.1016/j.ygyno.2019.10.015DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7083523PMC
January 2020

Care management intervention to strengthen self-care of multimorbid patients with type 2 diabetes in a German primary care network: A randomized controlled trial.

PLoS One 2019 12;14(6):e0214056. Epub 2019 Jun 12.

University Hospital Heidelberg; Department of General Practice and Health Services Research; Marsilius-Arkaden, Turm West, Heidelberg, Germany.

Purpose: This study aimed to assess the effectiveness of a care management intervention in improving self-management behavior in multimorbid patients with type 2 diabetes; care was delivered by medical assistants in the context of a primary care network (PCN) in Germany.

Methods: This study is an 18-month, multi-center, two-armed, open-label, patient-randomized parallel-group superiority trial (ISRCTN 83908315). The intervention group received the care management intervention in addition to the usual care. The control group received usual care only. The primary outcome was the change in self-care behavior at month 9 compared to baseline. The self-care behavior was measured with the German version of the Summary of Diabetes Self-Care Activities Measure (SDSCA-G). A multilevel regression analysis was applied.

Results: We assigned 495 patients to intervention (n = 252) and control (n = 243). At baseline, the mean age was 68 ±11 years, 47.8% of the patients were female and the mean HbA1c was 7.1±1.2%. The primary analysis showed no statistically significant effect, but a positive trend was observed (p = 0.206; 95%-CI = -0.084; 0.384). The descriptive analysis revealed a significantly increased sum score of the SDSCA-G in the intervention group over time (P = 0.012) but not in the control group (p = 0.1973).

Conclusion: The sum score for self-care behavior markedly improved in the intervention group over time. However, the results of our primary analysis showed no statistically significant effect. Possible reasons are the high baseline performance in our sample and the low intervention fidelity. The implementation of this care management intervention in PCNs has the potential to improve self-care behavior of multimorbid patients with type 2 diabetes.
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http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0214056PLOS
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6561631PMC
February 2020

Meeting the needs of multimorbid patients with Type 2 diabetes mellitus - A randomized controlled trial to assess the impact of a care management intervention aiming to improve self-care.

Diabetes Res Clin Pract 2019 Apr 11;150:184-193. Epub 2019 Mar 11.

Dept. of General Practice and Health Services Research, University Hospital Heidelberg, Im Neuenheimer Feld 130.3, 69120 Heidelberg, Germany. Electronic address:

Aims: This study explored the impact of a care management intervention aiming to improve self-care behavior in multimorbid individuals with Type 2 diabetes mellitus on health-related quality of life (HRQoL).

Methods: A patient-level randomized parallel-group superiority trial with 32 primary care practice teams, 11 care managers and 495 patients was conducted. The intervention was delivered as add-on to an already implemented disease management program and embedded in a network of primary care practices. Hierarchical linear modeling was used to analyze impacts of the care management approach on HRQoL.

Results: Small improvements of HRQoL in the intervention arm were found after nine months (r = 0.024; 95%CI = [0.000, 0.047]). However, compared to standard care no significant differences of HRQoL changes were observed (r = 0.022; 95%CI = [-0.011, 0.054]). Subgroup analyses showed effects for female participants favoring the intervention arm (r = 0.059; 95%CI = [0.010, 0.108]). No significant differences between intervention and control arm for several other subgroups were observed, including subgroups defined by comorbidities.

Conclusion: Additional care management did not influence HRQoL over and above standard disease management. Improving diabetes patients' self-care behavior in the context of structured disease management programs may be difficult to achieve. Women might benefit from additional care management, but this finding needs to be confirmed in future research.
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http://dx.doi.org/10.1016/j.diabres.2019.03.008DOI Listing
April 2019

Utilizing a Prototype Patient-Controlled Electronic Health Record in Germany: Qualitative Analysis of User-Reported Perceptions and Perspectives.

JMIR Form Res 2018 Aug 3;2(2):e10411. Epub 2018 Aug 3.

Department of General Practice and Health Services Research, University Hospital Heidelberg, Heidelberg, Germany.

Background: Personal electronic health records (PHR) are considered instrumental in improving health care quality and efficiency, enhancing communication between all parties involved and strengthening the patient's role. Technical architectures, data privacy, and applicability issues have been discussed for many years. Nevertheless, nationwide implementation of a PHR is still pending in Germany despite legal regulations provided by the eHealth Act passed in 2015. Within the information technology for patient-oriented care project funded by the Federal Ministry of Education and Research (2012-2017), a Web-based personal electronic health record prototype (PEPA) was developed enabling patient-controlled information exchange across different care settings. Gastrointestinal cancer patients and general practitioners utilized PEPA during a 3-month trial period. Both patients and physicians authorized by them could view PEPA content online and upload or download files.

Objective: This paper aims to outline findings of the posttrial qualitative study carried out to evaluate user-reported experiences, perceptions, and perspectives, focusing on their interpretation of PEPA beyond technical usability and views on a future nationwide implementation.

Methods: Data were collected through semistructured guide-based interviews with 11 patients and 3 physicians (N=14). Participants were asked to share experiences, views of perceived implications, and perspectives towards nationwide implementation. Further data were generated through free-text fields in a subsequent study-specific patient questionnaire and researcher's notes. Data were pseudonymized, audiotaped, and transcribed verbatim. Content analysis was performed through the Framework Analysis approach. All qualitative data were systemized by using MAXQDA Analytics PRO 12 (Rel.12.3.1). Additionally, participant characteristics were analyzed descriptively using IBM SPSS Statistics Version 24.

Results: Users interpreted PEPA as a central medium containing digital chronological health-related documentation that simplifies information sharing across care settings. While patients consider the implementation of PEPA in Germany in the near future, physicians are more hesitant. Both groups believe in PEPA's concept, but share awareness of concerns about data privacy and older or impaired people's abilities to manage online records. Patients perceive benefits for involvement in treatment processes and continuity of care but worry about financing and the implementation of functionally reduced versions. Physicians consider integration into primary systems critical for interoperability but anticipate technical challenges, as well as resistance from older patients and colleagues. They omit clear positioning regarding PEPA's potential incremental value for health care organizations or the provider-patient relationship.

Conclusions: Digitalization in German health care will continue to bring change, both organizational and in the physician-patient relationship. Patients endorse and expect a nationwide PEPA implementation, anticipating various benefits. Decision makers and providers need to contribute to closing modernization gaps by committing to new concepts and by invigorating transformed roles.
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http://dx.doi.org/10.2196/10411DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6334712PMC
August 2018

Patient reported outcomes - experiences with implementation in a University Health Care setting.

J Patient Rep Outcomes 2017 17;2:34. Epub 2018 Aug 17.

1University of Utah Medical Group, Salt Lake City, UT USA.

Aim: Patient-reported outcomes (PROs) have traditionally been implemented through a manual process of paper and pencil with little standardization throughout a Healthcare System. Each practice has asked patients specific questions to understand the patient's health as it pertains to their specialty. These data were rarely shared and there has not been a comparison of patient's health across different specialty domains. We sought to leverage interoperable electronic systems to provide a standardization of PRO assessments across sites of care.

Methods: University of Utah Health is comprised of four hospitals, 12 community clinics, over 400,000 unique annual patients, and more than 5000 providers. The enterprise wide implementation of PROs started in November of 2015. Patients can complete an assessment at home via email, or within the clinic on a tablet. Each specialty has the opportunity to add additional specialty-specific instruments. We customized the interval with which the patient answers the assessments based on specialty preference in order to minimize patient burden, while maximizing relevant data for clinicians.

Results: Barriers and facilitators were identified in three phases: Pre-implementation, Implementation, and Post-implementation. Each phase was further broken down into technical challenges, content inclusion and exclusion, and organizational strategy. These phases are unique and require collaboration between several groups throughout the organization with support from executive leadership.

Discussion: We are deploying system-wide standard and customized PRO collection with the goals of providing better patient care, improving physician-patient communication, and ultimately improving the value of the care given. Standardized assessment provides any clinician with information to quickly evaluate the overall, physical and mental health of a patient. This information is available real time to aid in patient communication for the clinician.
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http://dx.doi.org/10.1186/s41687-018-0059-0DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6097980PMC
August 2018

Developing a Shared Patient-Centered, Web-Based Medication Platform for Type 2 Diabetes Patients and Their Health Care Providers: Qualitative Study on User Requirements.

J Med Internet Res 2018 03 27;20(3):e105. Epub 2018 Mar 27.

Department of General Practice and Health Services Research, Heidelberg University Hospital, Heidelberg, Germany.

Background: Information technology tools such as shared patient-centered, Web-based medication platforms hold promise to support safe medication use by strengthening patient participation, enhancing patients' knowledge, helping patients to improve self-management of their medications, and improving communication on medications among patients and health care professionals (HCPs). However, the uptake of such platforms remains a challenge also due to inadequate user involvement in the development process. Employing a user-centered design (UCD) approach is therefore critical to ensure that user' adoption is optimal.

Objective: The purpose of this study was to identify what patients with type 2 diabetes mellitus (T2DM) and their HCPs regard necessary requirements in terms of functionalities and usability of a shared patient-centered, Web-based medication platform for patients with T2DM.

Methods: This qualitative study included focus groups with purposeful samples of patients with T2DM (n=25), general practitioners (n=13), and health care assistants (n=10) recruited from regional health care settings in southwestern Germany. In total, 8 semistructured focus groups were conducted. Sessions were audio- and video-recorded, transcribed verbatim, and subjected to a computer-aided qualitative content analysis.

Results: Appropriate security and access methods, supported data entry, printing, and sending information electronically, and tracking medication history were perceived as the essential functionalities. Although patients wanted automatic interaction checks and safety alerts, HCPs on the contrary were concerned that unspecific alerts confuse patients and lead to nonadherence. Furthermore, HCPs were opposed to patients' ability to withhold or restrict access to information in the platform. To optimize usability, there was consensus among participants to display information in a structured, chronological format, to provide information in lay language, to use visual aids and customize information content, and align the platform to users' workflow.

Conclusions: By employing a UCD, this study provides insight into the desired functionalities and usability of patients and HCPs regarding a shared patient-centered, Web-based medication platform, thus increasing the likelihood to achieve a functional and useful system. Substantial and ongoing engagement by all intended user groups is necessary to reconcile differences in requirements of patients and HCPs, especially regarding medication safety alerts and access control. Moreover, effective training of patients and HCPs on medication self-management (support) and optimal use of the tool will be a prerequisite to unfold the platform's full potential.
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http://dx.doi.org/10.2196/jmir.8666DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5893891PMC
March 2018

Clinical implementation of synthesized mammography with digital breast tomosynthesis in a routine clinical practice.

Breast Cancer Res Treat 2017 Nov 5;166(2):501-509. Epub 2017 Aug 5.

Population Health Sciences, University of Utah, Salt Lake City, UT, USA.

Background: Most published studies evaluating digital breast tomosynthesis (DBT) included a separate 2-dimensional full-field digital mammogram (FFDM) for DBT screening protocols, increasing radiation from screening mammography. Synthesized mammography (SM) creates a 2-dimensional image from the DBT source data, and if used in place of FFDM, it reduces radiation of DBT screening. This study evaluated the implementation of SM + DBT in routine screening practice in terms of recall rates, cancer detection rates (CDR), % of minimal cancers, % of node-positive cancers, and positive predictive values (PPV).

Materials And Methods: A multivariate retrospective institutional analysis was performed on 31,979 women who obtained screening mammography (10/2013-12/2015) with cohorts divided by modality (SM + DBT, FFDM + DBT, and FFDM). We adjusted for comparison mammograms, age, breast density, and the interpreting radiologist. Recall type was analyzed for differences (focal asymmetry, asymmetry, masses, calcifications, architectural distortion).

Results: SM + DBT significantly decreased the recall rate compared to FFDM (5.52 vs. 7.83%, p < 0.001) with no differences in overall CDR (p = 0.66), invasive and/or in situ CDR, or percentages of minimal and node-negative cancers. PPV1 significantly increased with SM + DBT relative to FFDM (9.1 vs. 6.2%, p = 0.02). SM + DBT did not differ significantly in recall rate or overall CDR compared to FFDM + DBT. There were statistically significant differences in certain findings recalled by screening modality (e.g., focal asymmetries).

Conclusions: SM + DBT reduces false positives compared to FFDM, while maintaining the CDR and other desirable audit outcome data. SM + DBT is more accurate than FFDM alone, and is a desirable alternative to FFDM + DBT, given the added benefit of radiation reduction.
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http://dx.doi.org/10.1007/s10549-017-4431-1DOI Listing
November 2017

[Personal health records on the Internet. A narrative review of attitudes, expectations, utilization and effects on health outcomes].

Z Evid Fortbild Qual Gesundhwes 2017 May 10;122:9-21. Epub 2017 May 10.

Universitätsklinikum Heidelberg, Abteilung Allgemeinmedizin und Versorgungsforschung, Marsilius-Arkaden, Turm West, Heidelberg, Germany.

Background: The integration of information and communication technologies (ICT) is increasingly considered in the development of healthcare structures. This fact is also recognised in the e-Health Act. In this context, personal health records (PHR) have a specific meaning. The aim of this paper is to provide an overview on utilization, barriers and possible effects on the implementation of PHR.

Methods: This analysis is based on a literature search in Web of Science (Core Collection) (01/2000 to 12/2014) using the following terms: "personal health record", "personal medical record", "personal electronic health record", "interpersonal health record", "personally controlled health record".

Results: In general, patients have positive attitudes towards the electronic exchange of personal health information (PHI) on a PHR. Even the sharing of PHI with physicians, health professionals, family and friends appears to be an option for many patients. Physicians also see the potential of a PHR on the internet, but they are more critical than patients. Barriers exist towards the use of complex and non-intuitive PHR concepts along with technical faults and the lack of functionality. From the physicians' perspective, prejudices concerning the use of PHR have not been confirmed and, other than previously expected, the workload has not increased so much. However, clinical outcomes have so far been rather moderate. Stronger effects may be achieved by embedding the PHR in a broader healthcare concept.

Conclusion: In the context of chronic disease, a connected PHR (patient-controlled, cross-sectoral, and interoperable) can be a valuable tool for organizing healthcare for patients. To take full effect, the development of such systems should focus on patients and their families as well as on physicians and other healthcare professionals. Whether the e-Health Act is a step in the right direction will have to be established by future analysis.
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http://dx.doi.org/10.1016/j.zefq.2017.04.006DOI Listing
May 2017

Complexity of care and strategies of self-management in patients with colorectal cancer.

Patient Prefer Adherence 2017 10;11:731-742. Epub 2017 Apr 10.

Department of General Practice and Health Services Research, University Hospital Heidelberg, Heidelberg, Germany.

Purpose: Given the inherent complexity of cancer care, in which personal, social, and clinical aspects accumulate and interact over time, self-management support need to become more comprehensive. This study has the following two aims: 1) to analyze and describe the complexity of individual patient situations and 2) to analyze and describe already established self-management strategies of patients to handle this complexity.

Methods: A qualitative study was conducted. Ten focus groups were performed collecting perspectives of the following three user groups: patients with colorectal cancer (n=12) and representatives from support groups (n=2), physicians (n=17), and other health care professionals (HCPs; n=16). Data were analyzed using qualitative content analysis.

Results: The results showed that cancer patients are struggling with the complexity of their individual situations characterized by the 1) "complexity of disease", 2) "complexity of care", and 3) "complexity of treatment-related data". To deal with these multifaceted situations, patients have established several individual strategies. These strategies are "proactive demanding" (eg, to get support and guidance or a meaningful dialog with the doctor), "proactive behavior" (eg, preparation of visits), and "proactive data management" (eg, in terms of merging treatment-related data and to disseminate these to their health care providers).

Conclusion: Patients with colorectal cancer have to handle a high complexity of individual situations within treatment and care of their disease. Private and social challenges have a culminating effect. This complexity increases as patients experience a longer duration of treatment and follow-up as patients have to handle a significantly higher amount of data over time. Self-management support should focus more on the individual complexity in a patient's life. This includes assisting patients with strategies that have already been established by themselves (like preparation of visits).
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http://dx.doi.org/10.2147/PPA.S127612DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5391842PMC
April 2017

Understanding Challenges, Strategies, and the Role of Support Networks in Medication Self-management Among Patients With Type 2 Diabetes.

Diabetes Educ 2017 04;43(2):190-205

Department of General Practice and Health Services Research, University Hospital of Heidelberg, Heidelberg, Germany (Mrs Bernhard, Dr Ose, Dr Baudendistel, Prof Szecsenyi, Prof Wensing, Dr Mahler).

Purpose The purpose of this qualitative study was to investigate the challenges and strategies of patients with type 2 diabetes mellitus (T2DM) regarding daily management of their medication regimen focusing on the role of their support networks. Methods A purposeful sample of 25 patients with T2DM was recruited from local self-help groups, general practitioner practices, and a university hospital in southwestern Germany. Four semi-structured focus groups were conducted to identify the challenges patients experienced, the strategies they used, and their collaboration with support networks to assist them in self-managing their medication regimen. Sessions were audio- and video-recorded, fully transcribed, and subjected to computer-aided qualitative content analysis, guided by the Self- and Family Management Framework (SFMF). Results Patients with T2DM experienced numerous challenges affecting medication self-management arising from their personal situation, health status and resources, characteristics of their regimen, and how health care is currently organized. Patients' self-initiated strategies included activating health care, community, social, and online resources; taking ownership of medication-related needs; and integrating medication-taking into daily life. Patients drew on self-help groups, family, and friends to discuss concerns regarding medication safety and receive experience-based information and advice for navigating within the health care system as well as practical hands-on support with daily medication self-management. Conclusions Understanding the challenges and building on strategies patients with T2DM devised help diabetes educators to better address patients' needs and priorities and guide patient-centered interventions to support patients' self-management activities. Community and social support networks operating in patients' lives need to be engaged in the self-management support.
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http://dx.doi.org/10.1177/0145721717697243DOI Listing
April 2017

A Personal Electronic Health Record: Study Protocol of a Feasibility Study on Implementation in a Real-World Health Care Setting.

JMIR Res Protoc 2017 Mar 2;6(3):e33. Epub 2017 Mar 2.

Department of General Practice and Health Services Research, University Hospital Heidelberg, Heidelberg, Germany.

Background: A significant potential for patient empowerment is seen in concepts aiming to give patients access to their personal health information (PHI) and to share this PHI across different care settings and health systems. Personal health records (PHRs) and the availability of information through health information exchanges are considered to be key components of effective and efficient health care. With tethered PHRs, as often used in the United States, patients' opportunities to manage their PHI are strongly restricted. Therefore, within the INFOPAT (information technology for patient oriented care) project (2012-2016) in Germany, funded by the Federal Ministry of Education and Research (BMBF), the development of a patient-controlled "personal electronic health record" (PEPA) was based on user requirements right from the beginning.

Objective: The overall objective of the study is to implement and evaluate a PEPA prototype for patients with colorectal cancer who are treated at the National Center for Tumor Diseases in Heidelberg. To achieve this aim, this study has 2 parts: a pre-implementation study (phase 1) and an implementation study (phase 2). The pre-implementation study will include a usability evaluation of the PEPA approach and the consideration of organizational preconditions for the implementation. With the implementation study, we will evaluate the process of implementation (eg, barriers or facilitators), the need for organizational change (eg, processes of communication), and the impact on outcomes (eg, self-efficacy, involvement in care).

Methods: The pre-implementation study is based on a mixed methods approach and comprises qualitative and quantitative element according to our research aim. We will use a think-aloud method for the usability analysis. Additionally, participants will be asked to evaluate their overall satisfaction based on a standardized questionnaire, the System Usability Scale. For the analysis of preconditions, we will conduct semistructured personal interviews with, for example, patients, medical assistants, and physicians. Within the implementation study the outcome evaluation is planned as a prospective, 3-month, open-label "before and after" trial. Additionally, for the analysis of processes and the need for organizational change, we will conduct interviews with the participants (eg, patients, general practitioners, physicians) of the before and after trial.

Results: This project is part of the INFOPAT project, which is funded (2012-2016) by the Federal Ministry of Education and Research (BMBF). The enrolment was completed in July 2016. Data analysis is currently under way and the first results are expected to be submitted for publication at end of 2017.

Conclusions: Existing approaches of PHRs aim to give patients access to their treatment data. With the PEPA approach and this study, we go a step further: patients have access to their PHI and they can give other persons (eg, their general practitioner) access. With this approach, new possibilities for professional collaboration and the engagement of patients can arise.
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http://dx.doi.org/10.2196/resprot.6314DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5355628PMC
March 2017

Reflection of illness and strategies for handling advanced lung cancer - a qualitative analysis in patients and their relatives.

BMC Health Serv Res 2017 03 2;17(1):173. Epub 2017 Mar 2.

Department of General Practice and Health Services Research, University Hospital Heidelberg, Im Neuenheimer Feld 130, 69120, Heidelberg, Germany.

Background: Lung cancer patients are often diagnosed in an advanced stage of disease. In a situation of palliative treatment, both patients and their relatives experience existential burden. Evidence suggests that multi-professional teams should deal with them as dyads. However, little is known about differences in their individual situation. The purpose of this study is to explore and compare reflections that arise out of the context of diagnosis and to compare how patients and their relatives try to handle advanced lung cancer.

Methods: Data was collected by qualitative interviews. A total of 18 participants, 9 patients diagnosed with advanced lung cancer (ICD- 10 C-34, stage IV) starting or receiving palliative treatment and 9 relatives were interviewed. Data was interpreted using qualitative content analysis.

Results: Reflection aspects were "thoughts about the cause", "meaning of belief" and "experience of inequity". Patients often experienced the diagnosis as inequity and were more receptive for believing in treatment success. The main strategies found were "repression", "positive attitude", "strong focus on the present" and "adjustment of life terms". Patient and relative dyads used the same strategies, but with different emphasis. That life time is limited was more frequently realized by relatives than by patients.

Conclusion: While strategies used by relatives are similar to those of patients', they are less reflective and more pragmatic in terms of handling daily life and organizing care. The interviewed patients were mostly not able to takeover these tasks. To strong was their belief in treatment success, their repression of the future and the focus on the present. This implicates, that in terms of end-of-life care, relatives are important to reach patients who are often not receptive to this topic.
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http://dx.doi.org/10.1186/s12913-017-2110-xDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5333386PMC
March 2017

Health-Related Quality of Life in Primary Care: Which Aspects Matter in Multimorbid Patients with Type 2 Diabetes Mellitus in a Community Setting?

PLoS One 2017 26;12(1):e0170883. Epub 2017 Jan 26.

Department of General Practice and Health Services Research; University Hospital Heidelberg, Heidelberg, Germany.

Background And Objective: Knowledge about predictors of health-related quality of life for multimorbid patients with type 2 diabetes mellitus in primary care could help to improve quality and patient-centeredness of care in this specific group of patients. Thus, the aim of this study was to investigate the impact of several patient characteristics on health-related quality of life of multimorbid patients with type 2 diabetes mellitus in a community setting.

Research Design And Methods: A cross-sectional study with 32 primary care practice teams in Mannheim, Germany, and randomly selected multimorbid patients with type 2 diabetes mellitus (N = 495) was conducted. In order to analyze associations of various patient characteristics with health-related quality of life (EQ-5D index) a multilevel analysis was applied.

Results: After excluding patients with missing data, the cohort consisted of 404 eligible patients. The final multilevel model highlighted six out of 14 explanatory patient variables which were significantly associated with health-related quality of life: female gender (r = -0.0494; p = .0261), school education of nine years or less (r = -0.0609; p = .0006), (physical) mobility restrictions (r = -0.1074; p = .0003), presence of chronic pain (r = -0.0916; p = .0004), diabetes-related distress (r = -0.0133; p < .0001), and BMI (r = -0.0047; p = .0045).

Conclusion: The findings of this study suggest that increased diabetes-related distress, chronic pain, restrictions in (physical) mobility, female gender, as well as lower education and, increased BMI have a noteworthy impact on health-related quality of life in multimorbid patients with type 2 diabetes mellitus seen in primary care practices in a community setting. The highlighted aspects should gain much more attention when treating multimorbid patients with type 2 diabetes mellitus.
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http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0170883PLOS
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5268781PMC
August 2017

Individual difficulties and resources - a qualitative analysis in patients with advanced lung cancer and their relatives.

Patient Prefer Adherence 2016 3;10:2021-2029. Epub 2016 Oct 3.

Department of General Practice and Health Services Research, Heidelberg University Hospital; University of Utah, Department of Population Health Sciences, Health System Innovation and Research, Salt Lake City, UT, USA.

Purpose: Lung cancer is a disease with a high percentage of patients diagnosed in an advanced stage. In a situation of palliative treatment, both patients and their relatives experience diverse types of distress and burden. Little research has been done to identify the individual difficulties and resources for patients with advanced lung cancer and their relatives. Especially, standardized questionnaire-based exploration may not assess the specific distressing issues that pertain to each individual on a personal level. The purpose of this qualitative study is to explore and compare individual difficulties and resources for lung cancer patients and their relatives within the palliative care context.

Methods: Data were collected by qualitative interviews. A total of 18 participants, nine patients diagnosed with advanced lung cancer (International Classification of Diseases, tenth edition, diagnosis C-34, stage IV) starting or receiving palliative treatment and nine relatives, were interviewed. Data were interpreted through qualitative content analysis.

Results: We identified four main categories of difficulties: communication and conflicts, home and everyday life, thinking about cancer, and treatment trajectory. In general, difficulties were related to interpersonal relationships as well as to impact of chemotherapy. Family, professional caregivers, and social life were significant resources and offered support to both patients and relatives.

Conclusion: Results suggest that patient and relative education could reduce difficulties in several areas. Patients seem to struggle with the fear of not having any perspective in therapy. Relatives seem to experience helplessness regarding their partner's deterioration and have to handle their own life and the care work simultaneously. The most important resource for both patients and relatives is their family. In addition, professional lung cancer nurses support relatives in an emotional and organizational way. Intense supportive care for relatives should be standardized.
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http://dx.doi.org/10.2147/PPA.S110667DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5055045PMC
October 2016

Strengthening Interprofessional Requirements Engineering Through Action Sheets: A Pilot Study.

JMIR Hum Factors 2016 Oct 18;3(2):e25. Epub 2016 Oct 18.

Department of General Practice and Health Services Research, University Hospital Heidelberg, Heidelberg, Germany.

Background: The importance of information and communication technology for healthcare is steadily growing. Newly developed tools are addressing different user groups: physicians, other health care professionals, social workers, patients, and family members. Since often many different actors with different expertise and perspectives are involved in the development process it can be a challenge to integrate the user-reported requirements of those heterogeneous user groups. Nevertheless, the understanding and consideration of user requirements is the prerequisite of building a feasible technical solution. In the course of the presented project it proved to be difficult to gain clear action steps and priorities for the development process out of the primary requirements compilation. Even if a regular exchange between involved teams took place there was a lack of a common language.

Objective: The objective of this paper is to show how the already existing requirements catalog was subdivided into specific, prioritized, and coherent working packages and the cooperation of multiple interprofessional teams within one development project was reorganized at the same time. In the case presented, the manner of cooperation was reorganized and a new instrument called an Action Sheet was implemented. This paper introduces the newly developed methodology which was meant to smooth the development of a user-centered software product and to restructure interprofessional cooperation.

Methods: There were 10 focus groups in which views of patients with colorectal cancer, physicians, and other health care professionals were collected in order to create a requirements catalog for developing a personal electronic health record. Data were audio- and videotaped, transcribed verbatim, and thematically analyzed. Afterwards, the requirements catalog was reorganized in the form of Action Sheets which supported the interprofessional cooperation referring to the development process of a personal electronic health record for the Rhine-Neckar region.

Results: In order to improve the interprofessional cooperation the idea arose to align the requirements arising from the implementation project with the method of software development applied by the technical development team. This was realized by restructuring the original requirements set in a standardized way and under continuous adjustment between both teams. As a result not only the way of displaying the user demands but also of interprofessional cooperation was steered in a new direction.

Conclusions: User demands must be taken into account from the very beginning of the development process, but it is not always obvious how to bring them together with IT knowhow and knowledge of the contextual factors of the health care system. Action Sheets seem to be an effective tool for making the software development process more tangible and convertible for all connected disciplines. Furthermore, the working method turned out to support interprofessional ideas exchange.
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http://dx.doi.org/10.2196/humanfactors.5364DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5090053PMC
October 2016
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