-
European Urology Focus May 2023For patients, quality of life is the confluence and interaction of multiple factors related to both the disease and to how life is lived with and beyond the disease.... (Review)
Review
For patients, quality of life is the confluence and interaction of multiple factors related to both the disease and to how life is lived with and beyond the disease. When tasked with completing a quality-of-life questionnaire, patients may well wonder for whose benefit this is, which really needs to be made clear. We discuss some of the issues around quality-of-life questionnaires and the challenge of the heterogeneity of the patient experience. PATIENT SUMMARY: This mini-review discusses quality-of-life measurements from the patient perspective and the need to take account of the patient's life and not just the disease.
Topics: Humans; Quality of Life; Patients; Surveys and Questionnaires; Patient Outcome Assessment
PubMed: 37028986
DOI: 10.1016/j.euf.2023.03.013 -
Journal of Palliative Medicine Feb 2023The importance of dignity in health care is well described, yet limited interventions exist to improve dignity, particularly patient-driven interventions. To test the...
The importance of dignity in health care is well described, yet limited interventions exist to improve dignity, particularly patient-driven interventions. To test the hypothesis that patient-selected photographs at the bedside would impact patients' sense of dignity and clinicians' sense of meaningful work, stimulate conversation between patients and clinicians, and serve as a visual and patient-driven complement to the Patient Dignity Question (PDQ). Patients admitted to three units at an academic medical center displayed photographs above their head of bed and were interviewed for this study. We used thematic content analysis to compare themes extracted from patient interviews, the PDQ, and clinician surveys. Eight themes emerged from patient interviews ( = 19): conveying goals, joy, capturing the patient's spirit, faith and spirituality, sense of belonging, physical appearance and health, stimulating conversation and meaningful connections, and humanizing the patient. The same themes emerged from the PDQ, with the exception of physical appearance and health. Notably, analysis of the clinician surveys ( = 40) yielded six similar themes: conveying goals, joy, stimulating conversation and meaningful connections, humanizing the patient, meaningful work, and compassion and empathy. Patient-selected photographs at the bedside impact both patients and clinicians by stimulating conversation and meaningful connections, humanizing patients, and fostering meaning and joy in work. Photographs and the PDQ provide a similar window into personhood, thereby supporting the use of a photograph as a visual and patient-driven complement to the PDQ.
Topics: Humans; Palliative Care; Respect; Patients; Surveys and Questionnaires; Personhood
PubMed: 35997617
DOI: 10.1089/jpm.2022.0161 -
Journal of Parkinson's Disease 2021Digital health promises to improve healthcare, health, and wellness through the use of digital technologies. The purpose of this commentary is to review and discuss the... (Review)
Review
Digital health promises to improve healthcare, health, and wellness through the use of digital technologies. The purpose of this commentary is to review and discuss the field of digital health for Parkinson's disease (PD) focusing on the needs, expectations, and wishes of people with PD (PwP). Our analysis shows that PwP want to use digital technologies to actively manage the full complexity of living with PD on an individual level, including the unpredictability and variability of the condition. Current digital health projects focusing on PD, however, does not live up to the expectations of PwP. We conclude that for digital health to reach its full potential, the right of PwP to access their own data needs to be recognised, PwP should routinely receive personalised feedback based on their data, and active involvement of PwP as an equal partner in digital health development needs to be the norm.
Topics: Digital Technology; Humans; Parkinson Disease; Patients
PubMed: 33682728
DOI: 10.3233/JPD-202408 -
Dementia and Geriatric Cognitive... 2008Behavioural and psychological symptoms have a high prevalence amongst patients with dementia and can be a significant source of distress to both patients and carers. The...
BACKGROUND/AIMS
Behavioural and psychological symptoms have a high prevalence amongst patients with dementia and can be a significant source of distress to both patients and carers. The present study explored the relationships between quality of life and behavioural and psychological symptoms in dementia (BPSD) from both patient and carer perspectives. Contextual factors surrounding the occurrence of BPSD were explored.
METHODS
Forty-six patients and 116 carers completed questionnaire measures of BPSD and quality of life.
RESULTS
BPSD were negatively associated with both patient and carer ratings of patient quality of life. The symptoms related to lower quality of life differed between patient and carer ratings: depression and irritability were found to predict lower carer ratings of quality of life, whilst delusions and apathy indicated lower patient ratings. Carers were found to be poor at identifying antecedents and consequences of BPSD.
CONCLUSIONS
The presence of BPSD is associated with lower quality of life in dementia. Interventions designed to improve the quality of life for patients should focus on the BPSD specifically associated with the patient's rating of quality of life. Information regarding the role of contextual factors in behaviour management should be made available to carers.
Topics: Affective Symptoms; Aged; Aged, 80 and over; Alzheimer Disease; Behavioral Symptoms; Caregivers; Delusions; Depression; Female; Humans; Male; Middle Aged; Patients; Quality of Life; Surveys and Questionnaires
PubMed: 18679028
DOI: 10.1159/000149584 -
Current Treatment Options in Oncology Jan 2023The specialty of palliative care has evolved over time to provide symptom management, psychosocial support, and care planning for patients with cancer throughout the... (Review)
Review
The specialty of palliative care has evolved over time to provide symptom management, psychosocial support, and care planning for patients with cancer throughout the disease continuum and in multiple care settings. This review examines the delivery and impact of palliative care in the outpatient, inpatient, and community-based settings. The article will discuss how these 3 palliative care settings can work together to optimize patient outcomes under a unifying model of palliative care "anywhere, anytime" and how to prioritize palliative care services when resources are limited. Many patients with advanced cancer receive care from each of the 3 branches of palliative care-outpatient, inpatient, and community-based settings-at some point along their disease trajectory. Early on, outpatient clinics provide longitudinal supportive care concurrent with active disease-modifying treatments. Telemedicine appointments can serve patients remotely to minimize their need to travel. When patients experience functional decline, community-based palliative care services can provide support and monitoring for patients at home. When patients develop acute symptomatic complications requiring admission, inpatient care consultation teams are essential for symptom management and goals-of-care discussions. For patients in severe distress, receiving care in a palliative care unit that provides intensive symptom control and facilitates complex discharge planning is ideal. Under a unifying model of palliative care designed to offer care "anywhere, anytime," the 3 branches of palliative care could work in unison to support each other, minimize gaps in care, and optimize patient outcomes.
Topics: Humans; Palliative Care; Neoplasms; Inpatients; Outpatients; Quality of Life
PubMed: 36576706
DOI: 10.1007/s11864-022-01044-1 -
Tidsskrift For Den Norske Laegeforening... Apr 2013
Topics: Humans; Patients; Terminology as Topic
PubMed: 23612085
DOI: 10.4045/tidsskr.13.0527 -
European Review For Medical and... May 2018The application of an electronic database in clinical practice is used widespread in every field of medicine. The aim of the present study is to illustrate our...
OBJECTIVE
The application of an electronic database in clinical practice is used widespread in every field of medicine. The aim of the present study is to illustrate our experience to use a database software for documentation of two of our clinical activities, outpatient hysteroscopy and inpatient gynaecological surgery.
PATIENTS AND METHODS
In 2004, we designed two databases, the first one to document surgical procedures in the operating theatre, the second to document outpatient hysteroscopy procedures using FileMaker v.8.5. The data entry interface contains free text fields for patient demographic data and the description of the surgical procedure, supplemented by drop-down lists for items such as clinical findings, procedures, instrumentation, technique, and complications. Copies were filed in the main hospital notes, sent to General Practitioners, and also given to our patients.
RESULTS
Since August 2004, we have used our two databases to document 2766 gynaecological operations and 3777 outpatient hysteroscopies. All users particularly liked the dropdown lists as their use greatly reduced the time taken to enter each patient's data. The databases were regularly used to select patients for audit projects and research data collection for prospective studies.
CONCLUSIONS
FileMaker is an user-friendly and easily configured software, extremely valuable in everyday clinical work.
Topics: Data Collection; Databases, Factual; Female; Gynecologic Surgical Procedures; Humans; Hysteroscopy; Inpatients; Medical Audit; Outpatients; Pregnancy; Prospective Studies; Software
PubMed: 29863232
DOI: 10.26355/eurrev_201805_15045 -
The Oncologist Jun 2014Decision making in oncology poses intricate ethical questions because treatment decisions should account not only for evidence-based standards but also for the patient's...
BACKGROUND
Decision making in oncology poses intricate ethical questions because treatment decisions should account not only for evidence-based standards but also for the patient's individual values and preferences. However, there is a scarcity of empirical knowledge about patient involvement in oncological decision making.
METHODS
Direct, nonparticipant observation was used as a qualitative research method to gain an understanding of the interplay between medical expertise and patient participation in oncological decision making. Based on a multiperspective approach, observations were performed in three settings (tumor conference, ward round, and outpatient clinic) in the oncology department of a German university hospital. The observation transcripts were analyzed using central features of qualitative data analysis.
RESULTS
Major differences were identified regarding the decision-making processes in the three settings related to the patient's presence or absence. When the patient was absent, his or her wishes were cited only irregularly; however, patients actively advanced their wishes when present. Preselection of treatments by physicians was observed, narrowing the scope of options that were finally discussed with the patient. Dealing with decisions about risky treatments was especially regarded as part of the physician's professional expertise.
CONCLUSION
The study reveals aspects of decision making for cancer patients that have been underexposed in the empirical and theoretical literature so far. Among these are the relevance of structural aspects for the decisions made and the practice of preselection of treatment options. It should be further discussed how far medical expertise reaches and whether therapeutic decisions can be made without consulting the patient.
Topics: Attitude of Health Personnel; Decision Making; Female; Humans; Male; Neoplasms; Patient Participation; Patients; Physician-Patient Relations; Physicians
PubMed: 24760711
DOI: 10.1634/theoncologist.2013-0268 -
Yakugaku Zasshi : Journal of the... 2016For prevention of the aggravation of diabetic nephropathy, a treatment method that combines self-care with medical guidance is becoming increasingly important, leading... (Review)
Review
For prevention of the aggravation of diabetic nephropathy, a treatment method that combines self-care with medical guidance is becoming increasingly important, leading to the development of programs for lifestyle modification for the patients. To assess the effectiveness of such programs, we have conducted a feasibility study of a patient self-care support program with medical collaboration by registered pharmacists in community pharmacies involving patients with diabetic nephropathy who are under treatment at medical institutions, including our hospital. This study evaluated the two primary measurements, which are A) the actual execution rate versus planned programs, and B) the patient satisfaction rate. In addition, the achievement rate of behavioral objectives, satisfaction rate of diabetes treatment, degree of concerns (Diabetes Treatment Satisfaction Questionnaire; DTSQ, Problem Areas in Diabetes; PAID) and other physiological indicators have been evaluated. With the approval of the IRB at Kitasato University, sixteen out of 18 patients have continued to participate in the support program, and the study has shown high patient satisfaction with pharmacist coaching support. Patients have gained interest in managing their lifestyles, thereby increasing self-efficacy. Also, information shared between the pharmacists and the physicians has clarified patients' issues and concerns pertaining to their lifestyles, which were effectively utilized in the coaching program. Through meetings with pharmacists, patients have been reassured of the expertise of the pharmacist and thus gained mutual trust, which leads to the patient's behavioral change. We believe that the collaboration of patients, pharmacists and physicians has resulted in effective team-based patient care.
Topics: Diabetic Nephropathies; Humans; Intersectoral Collaboration; Japan; Life Style; Mentoring; Patient Care Team; Patient Participation; Patient Satisfaction; Patients; Preventive Health Services; Professional-Patient Relations; Self Care
PubMed: 26831803
DOI: 10.1248/yakushi.15-00268-3 -
The Permanente Journal 2019Patient- and family-centered care (PFCC) literature is growing, but few reports present patient, caregiver, and practitioner perspectives about care coordination in a...
CONTEXT
Patient- and family-centered care (PFCC) literature is growing, but few reports present patient, caregiver, and practitioner perspectives about care coordination in a team-based model.
OBJECTIVE
To understand the patient's, caregiver's, and physician's ideal forms of PFCC, we investigated the function of the medical team quarterback, who coordinates and advocates for appropriate care, and probed to understand how the quarterback works with a team to contribute to ideal PFCC.
DESIGN AND MAIN OUTCOME MEASURES
Nine focus groups with 92 participants were held in 3 major cities. Patients (n = 35) and family members (n = 36) were recruited through market research groups. Physicians (n = 21) were recruited by the American College of Physicians. Focus group transcripts were analyzed and coded using inductive analysis.
RESULTS
The quarterback emerged as an important function for addressing care gaps and improving the care experience. We identified 6 themes articulated by participants that defined the role of a medical team quarterback: Overseeing care; coordinating diagnoses, tests, and treatments; advocating for patients; identifying and respecting patient values; proactively communicating; and solving problems. Patients and family members in our sample were open to different members of the care team acting as quarterback in coordination with the physician.
CONCLUSION
Medical team quarterbacks were perceived as enhancing team-based care by facilitating the coordination/communication that is critical to PFCC. Patients and family members acknowledged that PFCC can be delivered by different members of the medical team if the care felt organized and coordinated with the primary care physician.
Topics: Adult; Aged; Attitude of Health Personnel; Attitude to Health; Family; Female; Focus Groups; Humans; Male; Middle Aged; Patient Care Team; Patient-Centered Care; Patients; Physicians; Primary Health Care; Young Adult
PubMed: 31496495
DOI: 10.7812/TPP/18.147