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Techniques in Coloproctology Nov 2017The internet is becoming an increasingly popular resource to support patient decision-making outside of the clinical encounter. The quality of online health information... (Review)
Review
BACKGROUND
The internet is becoming an increasingly popular resource to support patient decision-making outside of the clinical encounter. The quality of online health information is variable and largely unregulated. The aim of this study was to assess the quality of online resources to support patient decision-making for full-thickness rectal prolapse surgery.
METHODS
This systematic review was registered on the PROSPERO database (CRD42017058319). Searches were performed on Google and specialist decision aid repositories using a pre-defined search strategy. Sources were analysed according to three measures: (1) their readability using the Flesch-Kincaid Reading Ease score, (2) DISCERN score and (3) International Patient Decision Aids Standards (IPDAS) minimum standards criteria score (IPDASi, v4.0).
RESULTS
Overall, 95 sources were from Google and the specialist decision aid repositories. There were 53 duplicates removed, and 18 sources did not meet the pre-defined eligibility criteria, leaving 24 sources included in the full-text analysis. The mean Flesch-Kincaid Reading Ease score was higher than recommended for patient education materials (48.8 ± 15.6, range 25.2-85.3). Overall quality of sources supporting patient decision-making for full-thickness rectal prolapse surgery was poor (median DISCERN score 1/5 ± 1.18, range 1-5). No sources met minimum decision-making standards (median IPDASi score 5/12 ± 2.01, range 1-8).
CONCLUSIONS
Currently, easily accessible online health information to support patient decision-making for rectal surgery is of poor quality, difficult to read and does not support shared decision-making. It is recommended that professional bodies and medical professionals seek to develop decision aids to support decision-making for full-thickness rectal prolapse surgery.
Topics: Comprehension; Consumer Health Information; Decision Making; Humans; Internet; Patient Education as Topic; Rectal Prolapse
PubMed: 29101494
DOI: 10.1007/s10151-017-1708-7 -
BMJ Supportive & Palliative Care Dec 2023Decision-making in palliative care usually involves both patients and family caregivers. However, how concordance and discordance in decision-making manifest and...
BACKGROUND
Decision-making in palliative care usually involves both patients and family caregivers. However, how concordance and discordance in decision-making manifest and function between patients and family caregivers in palliative care is not well understood.
OBJECTIVES
To identify key factors and/or processes which underpin concordance and/or discordance between patients and family caregivers with respect to their preferences for and decisions about palliative care; and ascertain how patients and family caregivers manage discordance in decision-making in palliative care.
METHODS
A systematic review and narrative synthesis of original studies published in full between January 2000 and June 2021 was conducted using the following databases: Embase; Medline; CINAHL; AMED; Web of Science; PsycINFO; PsycARTICLES; and Social Sciences Full Text.
RESULTS
After full-text review, 39 studies were included in the synthesis. Studies focused primarily on end-of-life care and on patient and family caregiver preferences for patient care. We found that discordance between patients and family caregivers in palliative care can manifest in relational conflict and can result from a lack of awareness of and communication about each other's preferences for care. Patients' advancing illness and impending death together with open dialogue about future care including advance care planning can foster consensus between patients and family caregivers.
CONCLUSIONS
Patients and family caregivers in palliative care can accommodate each other's preferences for care. Further research is needed to fully understand how patients and family caregivers move towards consensus in the context of advancing illness.
Topics: Humans; Palliative Care; Caregivers; Decision Making; Terminal Care; Hospice Care
PubMed: 35318213
DOI: 10.1136/bmjspcare-2022-003525 -
Psycho-oncology Oct 2021Patient involvement in decision making is conditional for personalised treatment decisions. We aim to provide an up-to-date overview of patients' preferred and perceived... (Review)
Review
OBJECTIVE
Patient involvement in decision making is conditional for personalised treatment decisions. We aim to provide an up-to-date overview of patients' preferred and perceived level of involvement in decision making for cancer treatment.
METHODS
A systematic search was performed in PubMed, EMBASE, PsycINFO and CINAHL for articles published between January 2009 and January 2020. Search terms were 'decision making', 'patient participation', 'oncology', 'perception' and 'treatment'. Inclusion criteria were: written in English, peer-reviewed, reporting patients' preferred and perceived level of involvement, including adult cancer patients and concerning decision making for cancer treatment. The percentages of patients preferring and perceiving an active, shared or passive decision role and the (dis)concordance are presented. Quality assessment was performed with a modified version of the New-Castle Ottawa Scale.
RESULTS
31 studies were included. The median percentage of patients preferring an active, shared or passive role in decision making was respectively 25%, 46%, and 27%. The median percentage of patients perceiving an active, shared or passive role was respectively 27%, 39%, and 34%. The median concordance in preferred and perceived role of all studies was 70%. Disconcordance was highest for a shared role; 42%.
CONCLUSIONS
Patients' preferences for involvement in cancer treatment decision vary widely. A significant number of patients perceived a decisional role other than preferred. Improvements in patient involvement have been observed in the last decade. However, there is still room for improvement and physicians should explore patients' preferences for involvement in decision making in order to truly deliver personalised cancer care.
Topics: Adult; Decision Making; Humans; Neoplasms; Patient Participation; Patient Preference; Physician-Patient Relations
PubMed: 34146446
DOI: 10.1002/pon.5750 -
Pain Research & Management 2021To comprehensively summarize the evidence on the preferences and values of migraine patients. (Review)
Review
OBJECTIVE
To comprehensively summarize the evidence on the preferences and values of migraine patients.
METHODS
We searched PubMed, Embase, Web of Science, China National Knowledge Infrastructure, Sino-Med, Chongqing VIP, and Wanfang Data for studies on the preferences and values of migraine patients. A qualitative review was performed, but no quantitative synthesis.
RESULTS
Twenty-one studies were finally included, involving a total of 8701 participants. Patients expected a cure, to be symptom-free, a reduction in frequency of headaches, a reduction in severity of headaches, and an improved quality of life from their preventive treatment. Patients expected rapid pain relief, complete pain relief, return to normal activities, no recurrence, and no adverse events from their acute symptomatic treatment.
CONCLUSION
Efficacy is the primary consideration in the treatment of migraine. Specifically, the most important embodiment of patient preferences and values is the reduced frequency of attacks with preventive treatment as well as prompt analgesia with acute symptomatic treatment.
Topics: China; Decision Making; Humans; Migraine Disorders; Patient Preference; Quality of Life
PubMed: 34567299
DOI: 10.1155/2021/9919773 -
Health Expectations : An International... Aug 2022Shared decision-making (SDM) as a multicollaborative approach is vital for facilitating patient-centred care. Considering the limited clinical practice, we attempted to... (Review)
Review
OBJECTIVE
Shared decision-making (SDM) as a multicollaborative approach is vital for facilitating patient-centred care. Considering the limited clinical practice, we attempted to synthesize the motivations and resistances, and investigate their mutual relationships for advancing the implementation of SDM.
METHODS
A comprehensive systematic review using Preferred Reporting Items for Systematic Review and Meta-Analysis guidelines was performed. 'Shared decision making' was searched as the mesh term through PubMed, Web of Science and EBSCO from 2000 to 2021, and the quality of literature was appraised using the QualSyst Tool. Motivations and resistances were categorized based on content analysis and the 'structure-process-outcome' model.
RESULTS
From 8319 potential citations, 105 were included, comprising 53 qualitative studies (the average quality score is 0.92) and 52 quantitative studies (the average quality score is 0.95). A total of 42 categories of factors were identified into 11 themes and further grouped into three dimensions: structure, process and outcome. The structure dimension comprised six themes (71.43%), the process dimension contained four themes (11.01%) and the outcome dimension covered only one theme. Across all categories, decision-making time and patients' decision preparedness in the process dimension were the most reported, followed by physicians' communication skills and health care environment in the structure dimension. Analysis of implementation of SDM among various types of diseases showed that more influencing factors were extracted from chronic diseases and unspecified disease decisions.
CONCLUSIONS
The major determinants for the implementation of SDM are focused on the structural dimension, which challenges the health systems of both developed and low- and middle-income countries. Furthermore, we consider it important to understand more about the interactions among the factors to take integrated measures to address the problems and to ensure the effectiveness of implementing SDM.
PATIENT OR PUBLIC CONTRIBUTION
Patients, healthcare professionals and other stakeholders articulated their perspectives on the implementation of SDM actively, and these were adopted and analysed in this study. However, the above-mentioned individuals were not directly involved in the process of this study. Protocol was registered on PROSPERO (CRD42021259309).
Topics: Communication; Decision Making; Decision Making, Shared; Health Services Accessibility; Humans; Motivation; Outcome and Process Assessment, Health Care; Patient Participation; Patient-Centered Care; Physician-Patient Relations; Professional Practice
PubMed: 35662361
DOI: 10.1111/hex.13541 -
Patient Education and Counseling Dec 2017This systematic review aims to examine the roles of family members (FMs) in treatment decision-making for adult patients without cognitive or psychiatric disorders... (Review)
Review
OBJECTIVE
This systematic review aims to examine the roles of family members (FMs) in treatment decision-making for adult patients without cognitive or psychiatric disorders affecting their ability to participate in decision-making.
METHODOLOGY
A comprehensive, systematic search of the Cochrane Library, PsycINFO, PubMed and ScienceDirect databases, with relevant keywords, was conducted. Two authors evaluated the eligibility of the studies independently, then cross-checked for accuracy. The quality of included studies were assessed using standardized criteria.
RESULTS
Out of the 12.137 studies identified, 40 were included. Results highlighted the different roles and influences FMs have in the decision-making process. Moreover, several factors ranging from personal to cultural and family-related factors influence their level of involvement. Regardless of the illness, some similarities in family influence exist (e.g., social support). However, the type of family involvement varies according to the illness, the treatment choice and the patients' culture.
CONCLUSION
FMs have an important role in the decision-making process. In fact, the final decision is often made by the patients after consulting their families. FMs can support both patients and medical teams, and thus facilitate the process.
PRACTICE IMPLICATIONS
Physicians should include FMs in treatment decision-making when the patients and their FMs wish to be included.
Topics: Caregivers; Chronic Disease; Decision Making; Family; Humans; Patient Participation; Physician-Patient Relations; Professional-Family Relations; Social Support
PubMed: 28838630
DOI: 10.1016/j.pec.2017.08.003 -
Journal of the Academy of... 2022Decision-making capacity can be affected by psychiatric illness. Women who have psychiatric illness who make decisions about their reproductive health may require... (Review)
Review
BACKGROUND
Decision-making capacity can be affected by psychiatric illness. Women who have psychiatric illness who make decisions about their reproductive health may require evaluation of their decision-making capacity.
OBJECTIVE
This article aims to characterize existing literature about capacity evaluations in women with psychiatric illness making reproductive decisions.
METHODS
We conducted a systematic review searching PubMed, EMBASE, Ovid PsycINFO, and ClinicalTrials.gov databases through July 2020. Articles were evaluated for relevance to inclusion criteria, first by title and abstract screening then by reading the full text of articles. Our inclusion criteria were case reports and studies that involved women of childbearing age with psychiatric illness making obstetrical decisions for whom decision-making capacity was evaluated. We qualitatively analyzed our data by examining themes within the studies, such as the circumstances of the referral and characteristics of reproductive decision-making. We also collected information about the clinical circumstances, such as the clinical setting (e.g., inpatient or outpatient, in primarily psychiatric or obstetric care) and who made the determination of capacity.
RESULTS
We identified 18 articles, which included 22 distinct patient cases and 27 distinct obstetrical decisions. Decisions about termination of pregnancy were most common, which were 10 of 27 decisions. Decisions about timing and mode of delivery accounted for 7 and 5 decisions, respectively. The most common psychiatric diagnosis reported was schizophrenia, which was present in 8 patients. Major depression and bipolar disorder were also frequently reported, present in 3 and 5 patients, respectively.
CONCLUSION
Patients who make health care decisions must have decision-making capacity. A patient with psychiatric illness does not inherently lack capacity, and in fact, most patients with psychiatric illness have decision-making capacity. Psychiatric illness, however, can add complexity to obstetrical medical decision-making. Reasons for this complexity include the involvement of many stakeholders, the often time-sensitive nature of these decisions, and the potentially unpredictable course of psychiatric illness. Successful management of these cases involves multidisciplinary collaboration, the use of preventative ethics through advanced care planning, and identification of a guardian or surrogate decision-maker when a patient is determined to lack decision-making capacity or for a patient who has capacity through advanced care planning.
PROSPERO REGISTRATION NUMBER
CRD42020143434.
Topics: Bipolar Disorder; Decision Making; Female; Humans; Mental Disorders; Pregnancy; Schizophrenia
PubMed: 34461294
DOI: 10.1016/j.jaclp.2021.08.007 -
Transplantation Reviews (Orlando, Fla.) Jan 2022To assess public knowledge and attitudes towards the family's role in deceased organ donation in Europe. (Review)
Review
Should the family have a role in deceased organ donation decision-making? A systematic review of public knowledge and attitudes towards organ procurement policies in Europe.
GOAL
To assess public knowledge and attitudes towards the family's role in deceased organ donation in Europe.
METHODS
A systematic search was conducted in CINHAL, MEDLINE, PAIS Index, Scopus, PsycINFO, and Web of Science on December 15th, 2017. Eligibility criteria were socio-empirical studies conducted in Europe from 2008 to 2017 addressing either knowledge or attitudes by the public towards the consent system, including the involvement of the family in the decision-making process, for post-mortem organ retrieval. Screening and data collection were performed by two or more independent reviewers for each record.
RESULTS
Of the 1482 results, 467 studies were assessed in full-text form, and 33 were included in this synthesis. When the deceased has not expressed any preference, a majority of the public support the family's role as a surrogate decision-maker. When the deceased expressly consented, the respondents' answers depend on whether they see themselves as potential donors or as a deceased's next-of-kin. Answers also depend on the relationship between the deceased and the decision-maker(s) within the family, and on their ethnic or cultural background.
CONCLUSIONS
Public views on the authority of the family in organ donation decision-making requiere further research. A common conceptual framework and validated well-designed questionnaires are needed for future studies. The findings should be considered in the development of Government policy and guidance regarding the role of families in deceased organ donation.
Topics: Attitude; Decision Making; Europe; Family; Humans; Organ Transplantation; Policy; Tissue Donors; Tissue and Organ Procurement
PubMed: 34864448
DOI: 10.1016/j.trre.2021.100673 -
European Journal of Cancer Care Nov 2022We aimed to systematically evaluate quality of shared decision-making (SDM) in colorectal cancer (CRC) screening clinical practice guidelines (CPGs) and consensus... (Review)
Review
INTRODUCTION
We aimed to systematically evaluate quality of shared decision-making (SDM) in colorectal cancer (CRC) screening clinical practice guidelines (CPGs) and consensus statements (CSs).
METHODS
Search for CRC screening guidances was from 2010 to November 2021 in EMBASE, Web of Science, MEDLINE, Scopus and CDSR, and the World Wide Web. Three independent reviewers and an arbitrator rated the quality of each guidance using a SDM quality assessment tool (maximum score: 31). Reviewer agreement was 0.88.
RESULTS
SDM appeared in 41/83 (49.4%) CPGs and 9/19 (47.4%) CSs. None met all the quality criteria, and 51.0% (52/102) failed to meet any quality items. Overall compliance was low (mean 1.63, IQR 0-2). Quality was better in guidances published after 2015 (mean 1, IQR 0-3 vs. mean 0.5, IQR 0-1.5; p = 0.048) and when the term SDM was specifically reported (mean 4.5, IQR 2.5-4.5 vs. mean 0.5, IQR 0-1.5; p < 0.001). CPGs underpinned by systematic reviews showed better SDM quality than consensus (mean 1, IQR 0-3 vs. mean 0, IQR 0-2, p = 0.040).
CONCLUSION
SDM quality was suboptimal and mentioned in less than half of the guidances, and recommendations were scarce. Guideline developers should incorporate evidence-based SDM recommendations in guidances to underpin the translation of evidence into practice.
Topics: Humans; Colorectal Neoplasms; Decision Making; Decision Making, Shared; Early Detection of Cancer; Patient Participation
PubMed: 36254840
DOI: 10.1111/ecc.13738 -
Journal of Pediatric Nursing 2023Decision-making during the end-of-life (EOL) phase for children with cancer is extremely difficult for parents. We synthesized the qualitative experiences of children... (Review)
Review
BACKGROUND
Decision-making during the end-of-life (EOL) phase for children with cancer is extremely difficult for parents. We synthesized the qualitative experiences of children with cancer, parents, and healthcare professionals (HCPs), and their social interactions during the EOL decision-making process in the pediatric oncology setting.
METHODS
Meta-ethnography was used to conduct a systematic review and meta-synthesis. We searched four online databases to identify original studies published in English and Japanese and examined 21 relevant studies. Two Japanese reviewers discussed the differences/relationships and included studies that synthesized the translated qualitative findings. A conceptual model of social interactions was created.
RESULTS
We identified four themes regarding children's, parents', and HCPs' experiences: hope and confrontation with the child's death, guidance and support during uncertainty, awareness of being protected and having hope, and mutual unspoken integration of values.
CONCLUSIONS
These themes evince the experiences of children, parents, and HCPs during the EOL decision-making process and suggests a complex three-way social interaction model. While considering such distinctive social interactions during a child's EOL, this study revealed the sharing of prudent information and psychosocial support by HCPs. The findings indicate that hope and uncertainty are key elements for effectively understanding the experiences of children and parents and that EOL decision-making should not be rushed but should be supported by leaving room for uncertainty and acknowledging parents' emotional needs and fostering new hope. Further research into how hope can be further supported in situations that are rife with uncertainty is needed.
Topics: Child; Humans; Qualitative Research; Parents; Anthropology, Cultural; Neoplasms; Death; Delivery of Health Care; Decision Making
PubMed: 36586777
DOI: 10.1016/j.pedn.2022.12.004