scholarly journals Continuity of Health, Citizen Empowerment as Key Driver

Author(s):  
Jacob Hofdijk ◽  
Felix Cillessen

Self-management for prevention and care will play a significant role in the transition to apply person-centered care. Interoperability requirements, an overarching care plan, integration of social determinants, and the focus on prevention are important ingredients in the vision on its implementation.

2020 ◽  
Vol 21 (1) ◽  
Author(s):  
David T. Eton ◽  
Mark Linzer ◽  
Deborah H. Boehm ◽  
Catherine E. Vanderboom ◽  
Elizabeth A. Rogers ◽  
...  

Abstract Background In primary care there is a need for more quality measures of person-centered outcomes, especially ones applicable to patients with multiple chronic conditions (MCCs). The aim of this study was to derive and validate a short-form version of the Patient Experience with Treatment and Self-management (PETS), an established measure of treatment burden, to help fill the gap in quality measurement. Methods Patient interviews (30) and provider surveys (30) were used to winnow items from the PETS (60 items) to a subset targeting person-centered care quality. Results were reviewed by a panel of healthcare providers and health-services researchers who finalized a pilot version. The Brief PETS was tested in surveys of 200 clinic and 200 community-dwelling MCC patients. Surveys containing the Brief PETS and additional measures (e.g., health status, medication adherence, quality of care, demographics) were administered at baseline and follow-up. Correlations and t-tests were used to assess validity, including responsiveness to change of the Brief PETS. Effect sizes (ES) were calculated on mean differences. Results Winnowing and panel review resulted in a 34-item Brief PETS pilot measure that was tested in the combined sample of 400 (mean age = 57.9 years, 50% female, 48% white, median number of conditions = 5). Reliability of most scales was acceptable (alpha > 0.70). Brief PETS scores were associated with age, income, health status, and quality of chronic illness care at baseline (P < .05; rho magnitude range: 0.16–0.66). Furthermore, Brief PETS scores differentiated groups based on marital and education status, presence/absence of a self-management routine, and optimal/suboptimal medication adherence (P < .05; ES range: 0.25–1.00). Declines in patient-reported physical or mental health status over time were associated with worsening PETS burden scores, while improvements were associated with improving PETS burden scores (P < .05; ES range: 0.04–0.44). Among clinic patients, 91% were willing to complete the Brief PETS as part of their clinic visits. Conclusions The Brief PETS (final version: 32 items) is a reliable and valid tool for assessing person-centered care quality related to treatment burden. It holds promise as a means of giving voice to patient concerns about the complexity of disease management.


10.2196/17697 ◽  
2020 ◽  
Vol 9 (7) ◽  
pp. e17697 ◽  
Author(s):  
Sofie Jakobsson ◽  
Daniel S Olsson ◽  
Eva Andersson ◽  
Tobias Hallén ◽  
David Krabbe ◽  
...  

Background Patients with pituitary tumors often live with lifelong consequences of their disease. Treatment options include surgery, radiotherapy, and medical therapy. Symptoms associated with the tumor or its treatment affect several areas of life. Patients need to adhere to long-term contact with both specialist and general health care providers due to the disease, complex treatments, and associated morbidity. The first year after pituitary surgery constitutes an important time period, with medical evaluations after surgery and decisions on hormonal substitution. The development and evaluation of extended patient support during this time are limited. Objective The aim of this study is to evaluate whether support within a person-centered care practice increases wellbeing for patients with pituitary tumors. Our main hypothesis is that the extended support will result in increased psychological wellbeing compared with the support given within standard of care. Secondary objectives are to evaluate whether the extended support, compared with standard care, will result in (1) better health status, (2) less fatigue, (3) higher satisfaction with care, (4) higher self-efficacy, (5) increased person-centered content in care documentation, and (6) sustained patient safety. Methods Within a quasiexperimental design, patients diagnosed with a pituitary tumor planned for neurosurgery are consecutively included in a pretest-posttest study performed at a specialist endocrine clinic. The control group receives standard of care after surgery, and the interventional group receives structured patient support for 1 year after surgery based on person-centeredness covering self-management support, accessibility, and continuity. A total of 90 patients are targeted for each group. Results Recruitment into the control group was performed between Q3 2015 and Q4 2017. Recruitment into the intervention group started in Q4 2017 and is ongoing until Q4 2020. The study is conducted according to the Declaration of Helsinki, and the protocol has received approval from a regional ethical review board. Conclusions This study entails an extensive intervention constructed in collaboration between clinicians, patients, and researchers that acknowledges accessibility, continuity, and self-management support within person-centeredness. The study has the potential to compare standard care to person-centered practice adapted specifically for patients with pituitary tumors and evaluated with a combination of patient-reported outcomes and patient-reported experience measures. Following the results, the person-centered practice may also become a useful model to further develop and explore person-centered care for patients with other rare, lifelong conditions. Trial Registration Researchweb.org. https://www.researchweb.org/is/sverige/project/161671 International Registered Report Identifier (IRRID) DERR1-10.2196/17697


2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 454-454
Author(s):  
Vanessa Burshnic ◽  
Michelle Bourgeois

Abstract Government mandates require US nursing homes to provide preference-based, person-centered care. Persons with dementia (PWD) are less likely to have a role in preference assessments (PAs) used for care planning due to communication challenges associated with the disease. Thus, PWD are at risk of receiving de-personalized treatments. External supports (photograph and text cues) are known to improve communication in PWD. Yet these cues have never been studied with widely used PAs, such as the MDS 3.0 Section F and Preferences for Everyday Living Inventory (PELI). This study examined the effect of two PA conditions (externally supported; standard verbal) on preference consistency and response types (off-topic, clarification requests, elaboration) of residents with severe dementia (N=21) (BIMS &lt; 7) when assessed twice, one-week apart. PA questions were derived from the MDS 3.0 Section F and PELI. As a social validity measure, naïve judges (N=10) listened to interviews and rated residents’ communication clarity and their confidence understanding residents’ preferences. Results showed that neither condition promoted significantly greater levels of consistency over time. Residents’ ‘clarification requests’ were significantly fewer with use of external supports. Other response types were not significantly different across conditions. Judges’ ratings were not significantly different across conditions; however, they rated residents’ communication as clear and understandable overall. This study addresses a gap in current research and holds important implications for helping providers meet government mandates and enhance care plan participation by residents with severe dementia and other communication challenges.


Author(s):  
Jacob Hofdijk ◽  
Felix Cillessen

Citizens of the Netherlands receive excellent care, when they need it, insurance based funded according to the solidarity principle. Maintaining this system is a huge challenge, as we live longer and the demand for care is growing. With an increasing percentage of multi-morbidity in all age groups the need for integrated network organized care is growing at equal pace. Gradually the need to shift focus to prevention is increasingly understood, but a challenging business model is still lacking. The involvement of citizens in maintaining their health requires a focus on managing the social determinants of health. The concept of the holistic problem list and the overarching care plan provides a unique way to combine both health and disease management. Our vision is to bring control to the patient and promote coordination of all active problems across the health and social care network.


2020 ◽  
Author(s):  
Sofie Jakobsson ◽  
Daniel S Olsson ◽  
Eva Andersson ◽  
Tobias Hallén ◽  
David Krabbe ◽  
...  

BACKGROUND Patients with pituitary tumors often live with lifelong consequences of their disease. Treatment options include surgery, radiotherapy, and medical therapy. Symptoms associated with the tumor or its treatment affect several areas of life. Patients need to adhere to long-term contact with both specialist and general health care providers due to the disease, complex treatments, and associated morbidity. The first year after pituitary surgery constitutes an important time period, with medical evaluations after surgery and decisions on hormonal substitution. The development and evaluation of extended patient support during this time are limited. OBJECTIVE The aim of this study is to evaluate whether support within a person-centered care practice increases wellbeing for patients with pituitary tumors. Our main hypothesis is that the extended support will result in increased psychological wellbeing compared with the support given within standard of care. Secondary objectives are to evaluate whether the extended support, compared with standard care, will result in (1) better health status, (2) less fatigue, (3) higher satisfaction with care, (4) higher self-efficacy, (5) increased person-centered content in care documentation, and (6) sustained patient safety. METHODS Within a quasiexperimental design, patients diagnosed with a pituitary tumor planned for neurosurgery are consecutively included in a pretest-posttest study performed at a specialist endocrine clinic. The control group receives standard of care after surgery, and the interventional group receives structured patient support for 1 year after surgery based on person-centeredness covering self-management support, accessibility, and continuity. A total of 90 patients are targeted for each group. RESULTS Recruitment into the control group was performed between Q3 2015 and Q4 2017. Recruitment into the intervention group started in Q4 2017 and is ongoing until Q4 2020. The study is conducted according to the Declaration of Helsinki, and the protocol has received approval from a regional ethical review board. CONCLUSIONS This study entails an extensive intervention constructed in collaboration between clinicians, patients, and researchers that acknowledges accessibility, continuity, and self-management support within person-centeredness. The study has the potential to compare standard care to person-centered practice adapted specifically for patients with pituitary tumors and evaluated with a combination of patient-reported outcomes and patient-reported experience measures. Following the results, the person-centered practice may also become a useful model to further develop and explore person-centered care for patients with other rare, lifelong conditions. CLINICALTRIAL Researchweb.org. https://www.researchweb.org/is/sverige/project/161671 INTERNATIONAL REGISTERED REPORT DERR1-10.2196/17697


Author(s):  
Yvette M. McCoy

Purpose Person-centered care shifts the focus of treatment away from the traditional medical model and moves toward personal choice and autonomy for people receiving health services. Older adults remain a priority for person-centered care because they are more likely to have complex care needs than younger individuals. Even more specifically, the assessment and treatment of swallowing disorders are often thought of in terms of setting-specific (i.e., acute care, skilled nursing, home health, etc.), but the management of dysphagia in older adults should be considered as a continuum of care from the intensive care unit to the outpatient multidisciplinary clinic. In order to establish a framework for the management of swallowing in older adults, clinicians must work collaboratively with a multidisciplinary team using current evidence to guide clinical practice. Private practitioners must think critically not only about the interplay between the components of the evidence-based practice treatment triad but also about the broader impact of dysphagia on caregivers and families. The physical health and quality of life of both the caregiver and the person receiving care are interdependent. Conclusion Effective treatment includes consideration of not only the patient but also others, as caregivers play an important role in the recovery process of the patient with swallowing disorders.


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