Home telehealth has the potential to benefit heart failure (HF) and chronic obstructive pulmonary disease (COPD) patients, however large-scale deployment is yet to be achieved.The aim of this review was to assess levels of uptake of home telehealth by patients with HF and COPD and the factors that determine whether patients do or do not accept and continue to use telehealth.This research performs a narrative synthesis of the results from included studies.Thirty-seven studies met the inclusion criteria. Studies that reported rates of refusal and/or withdrawal found that almost one third of patients who were offered telehealth refused and one fifth of participants who did accept later abandoned telehealth. Seven barriers to, and nine facilitators of, home telehealth use were identified.Research reports need to provide more details regarding telehealth refusal and abandonment, in order to understand the reasons why patients decide not to use telehealth.The online version of this article (doi:10.1007/s12160-014-9607-x) contains supplementary material, which is available to authorized users. Heart failure (HF) and chronic obstructive pulmonary disease (COPD) place considerable burden on patients and healthcare systems through repeated emergency department visits and lengthy hospital admissions , 2. The Telehealth is a comprehensive concept that encompasses the transfer and exchange of health information through electronic devices. The focus of the present review is home telehealth, which involves the remote delivery of health-related services via information and communication technologies between a patient and healthcare professionals, to assist in the monitoring and management of a patient’s health condition , 21. TheDespite mixed evidence of benefit, there is a strong policy push to introduce telehealth in the UK and Europe. The UK Department of Health believes that telehealth and telecare (services that enable people to live independently and securely in their own homes) could benefit the lives of at least three million people with long-term conditions and/or social care needs. The rationale is that, if implemented effectively as part of a whole system redesign of care, then telehealth and telecare can ease pressure on long-term UK National Health Service costs and improve people’s quality of life through enhanced self-care in the home environment . Large-sPatient acceptance has been identified as one of the most important influences on the future implementation of telehealth , and theA systematic review was undertaken to consolidate current knowledge on: (a) the rates of uptake, refusal, and abandonment of home telehealth by patients with HF or COPD, and (b) the factors that influence whether patients with HF or COPD do or do not accept and use telehealth.The review was conducted in accordance with the Cochrane guidelines for systematic reviews .www.mendeley.com).The following databases were searched for relevant studies published without date limits up to the date of the search (September 2013): the Cochrane CENTRAL Register of Controlled Trials, Cumulative Index to Nursing and Allied Health Literature, MEDLINE, PsycInfo, and the ISI Web of Knowledge/Science/Conference Proceedings Citation Index. To be as comprehensive as possible, it was necessary to include a wide range of free-text terms for each of the concepts. The following population search terms were used: “Heart Failure” OR “HF” OR “Chronic Obstructive Pulmonary Disease” OR “COPD.” The following intervention search terms were used: “telehealth” OR “telemedicine” OR “telecare” OR “telehomecare” OR “telemonitoring” OR “telemanagement” OR “teleconsultation” OR “telecommunications” OR “remote consultation” OR “remote monitoring” OR “assistive technology” OR “ehealth” OR “telenursing.” The following outcome terms were used: “uptake” OR “adoption” OR “refusal” OR “abandon*” OR “accept*” OR “embrace” OR “reject*” OR “decline” OR “beliefs” OR “perceptions” OR “facilitators” OR “barriers” OR “obstacles” OR “challenges” OR “sustained use” OR “maintenance.” Hand-searching reference lists of other systematic review articles was also conducted , 27–29, A study was eligible for inclusion if it described an intervention that specifically utilized technology as a means of delivering healthcare to patients with a diagnosis of HF and/or COPD in their own homes or in a residential care home. Telehealth had to be a core component of the intervention. Interventions used by the patient with no interaction or input from a health professional or facilitator were excluded. Technology using mobile phone-based interventions was also excluded, as the focus of the review was home telehealth. Studies were included in the review if they mentioned any details relating to patient acceptance, abandonment, or perceptions of telehealth. Randomized controlled trials, correlational survey research, and observational research were eligible for inclusion. Published conference proceedings were included where sufficient data were provided on population, intervention, and outcomes. Nonprimary research and dissertations were excluded. HF and/or COPD patients confirmed by medical records or by medical practitioner were eligible for inclusion. Hospitalized patients and those with acute exacerbations of symptoms were excluded. Participants had to be aged 18 years or above. Data to be extracted for HF and/or COPD patients had to be presented in isolation from patients with a different diagnosis (see Table Two members of the study team (SLG and CJA) independently screened the titles and abstracts. Full papers were obtained if either reviewer did not exclude the paper based on the abstract or title. Full texts of papers were obtained and read by one author (SLG). The relevance of each study was assessed according to the predefined inclusion criteria.Data from the included studies were extracted by author SLG into a data extraction sheet prepared for this study  A narrative synthesis of the data, primarily in terms of study design, population, type of intervention, rates of uptake, refusal, and abandonment and barriers to, and facilitators of, acceptance and sustained use of telehealth, was carried out ESM . ThematiThemes were separated into two categories: Those aspects of the intervention that were judged to act as barriers to telehealth and those aspects of the intervention that were judged to act as facilitators of telehealth. Barriers were defined as any negative factors that may lead to patients declining or abandoning telehealth. Facilitators were defined as any positive factors that may lead to patients deciding to take up or sustain using telehealth. There needed to be multiple (≥2) occurrences of positive or negative details within and between papers, in order for them to be considered a barrier or facilitator. To gain insight into patient perceptions of the barriers to and facilitators of telehealth acceptance and adherence, the themes were listed in two tables, linking the barriers and facilitators with the studies in which they were reported. From these tables, it was possible to see which barriers and facilitators were reported most frequently. Rather than categorizing themes separately for HF and COPD patients, they were combined into a single category, as several previous studies have combined the results for HF and COPD patients regarding the impact and perceptions of telehealth , 22, 39.Methodological quality of studies was not used as an inclusion criterion for the review, due to the diversity in study design  and becaThe initial cross-database search yielded 824 articles Fig. . In totaOf the 37 studies that met the inclusion criteria, 13 were randomized controlled trials RCT: , 74, 78), 7874, 7Of the 37 studies, 22 included patients with HF only, 11 included patients with COPD only, and 4 studies included patients with both HF and COPD. The number of study participants ranged from 4 to 420 with an overall mean of 78 participants and a median of 50 (37 studies). The number of participants provided with telehealth, or whose perceptions of telehealth were assessed, ranged from 4 to 195 with an overall mean of 51 participants and a median of 30 (37 studies) All of the 37 studies included in the review featured either an intervention, a demonstration of a telehealth device, or patient interviews discussing perceptions of a telehealth intervention. The interventions included: Remote monitoring and transmission of physiological data, assessment of health symptoms, nurse telephone contact or video consultation, disease specific education, health questions, and reinforcement of self-management behaviors ESM .Recruitment context varied across the included studies. Participants were recruited from hospitals and/or medical centers Eight studies reported participant refusal rates for those offered telehealth only,  and withdrawals (4–55 %). Twenty-one studies reported participant withdrawals from the study, relating to people offered telehealth only, however only eight studies reported participant refusal rates, therefore levels reported in this review may not be reflective of the whole picture, owing to the small sample. Five out of eight studies documented reasons for refusals to participate and 14 out of 21 studies provided reasons for participant withdrawals. However, study reports did not go into great detail, meaning that caution is warranted in interpreting these reports as accurate accounts of participants’ reasons for refusing or withdrawing. Limited details were provided regarding the demographics of patients who refused to participate, or withdrew. Although 23 studies commented on participant refusals and/or withdrawals, only four studies provided some form of demographic data for these participants. From the data provided by these studies it appeared that there were very few differences in relation to the age and gender of people who refused compared with participants who accepted. However, only one study reported details about the demographics of the participants who withdrew, meaning it is difficult to draw any comparisons between the participants who accepted a telehealth intervention and those who withdrew from the intervention.We cannot assess how the refusal and withdrawal rates in the current review compare with studies of other interventions because papers do not consistently report refusal or withdrawal rates . This isThe review identified seven individual patient barriers to telehealth acceptance and nine individual patient facilitators of telehealth acceptance. Barriers and facilitators were identified across all study designs; however, the majority of barriers and facilitators were identified in the qualitative or mixed methods studies. This is most likely explained by the fact that qualitative studies are better able to identify patient reported barriers and facilitators , as theyThe most frequently reported facilitators of telehealth were: Improved self-care, increased access to healthcare, and improved health knowledge. Patients think telehealth enables them to better manage their health, by giving them better physiological control –95. TeleIn the current review, the quality of included studies was assessed using the Critical Appraisal Skills Program critical appraisal checklists, which address the key domains of methodological quality. Despite several studies in the current review having methodological weaknesses, there were no major differences in the reporting of participant recruitment by all of the 37 included studies, as compared with those reported by the 11 high-quality studies. Participant refusal rates were greater in the high-quality studies, as compared with the moderate-quality studies; however only one high-quality study reported the refusal rate for telehealth participants only, in comparison to seven moderate-quality studies. Thus, it could be argued that some of the studies which were regarded as being high-quality were not actually that, but rather they were written up in a high-quality way. Furthermore, almost all of the barriers and facilitators that were identified as being the most reported when including all studies regardless of methodological quality were each reported in multiple high-quality papers. Thus, it appears that the quality of the papers did not have a major effect on the reported results with respect to the barriers and facilitators of telehealth.Healthcare professionals have a key role to play in patient recruitment to telehealth interventions. Evidence would suggest that, in research trials, frontline staff effectively screen patients for whom they consider telehealth would be beneficial . For thaTo our knowledge, this is the first systematic review to examine levels of home telehealth uptake and abandonment and the factors that influence HF and/or COPD patients’ decisions to accept, refuse, or sustain using telehealth. A potential limitation of the present review relates to the issue of publication bias. For this review, we relied on the information that was provided in published literature only, therefore, we could have missed important gray literature. However, the problem with gray literature is that some associations or organizations can publish reports and working papers that have their own political or social agendas, thus the validity of evidence may be questionable as a result of selective reporting . SecondlThe present review has consolidated current knowledge on the rates of uptake, refusal, and sustained use of home telehealth and has documented reasons for patient refusals and withdrawals from participation. It is evident that research needs to report more detail relating to participant refusal and withdrawal rates and their reasons for this. One explicit recommendation would be for future trials to report refusal rates for both study participants and telehealth participants. The review also identified an extensive range of barriers to, and facilitators of, telehealth. Technical problems appeared to be a major issue impacting on the uptake and sustained use of telehealth, with studies reporting little tolerance for poorly working systems, thus it is essential that telehealth equipment is user friendly and functions effectively. Furthermore, users can be unsure of the technology, hence appropriate training and access to support could also support uptake and use. Compared with quantitative studies, qualitative studies produced a wider range of barriers to and facilitators of telehealth. Therefore, further qualitative work is required , which wESM 1(DOC 316 kb)Below is the link to the electronic supplementary material.


Experience with open disclosure and its study are restricted to certain western countries. In addition, there are concerns that open disclosure may be less suitable in non-western countries. The present study explored and compared the in-depth perceptions of the general public and physicians regarding open disclosure in Korea.We applied the COREQ  checklist to this qualitative study. We conducted 20 in-depth interviews and four focus group discussions with 16 physicians and 18 members of the general public. In-depth interviews and focus group discussions were performed according to semi-structured guidelines developed according to a systematic review of open disclosure. We conducted a directed content analysis by analyzing the verbatim transcripts and field notes in accordance with the predetermined guidelines.Open disclosure perceptions were summarized in terms of the “five Ws and one H” . All physician and general public participants acknowledged the normative justifiability of open disclosure. The participants mostly agreed on the known effects of open disclosure, but the physicians had negative opinions on its expected effects, such as decreased intention of the general public to file lawsuits and increased credibility of medical professionals. Generally, the participants thought that open disclosure is required for medical errors causing major harm. However, the physicians and general public had conflicting opinions on the need for open disclosure of near misses. Most physicians did not know how to conduct open disclosure and some physicians had bad experiences due to inappropriate or incomplete open disclosure.Physicians and the general public in Korea acknowledge the need for open disclosure. Guidelines according to the type of patient safety incident are required to encourage physicians to more readily conduct open disclosure. Furthermore, hospitals need to consider organizing a dedicated team and hiring experts for open disclosure.The online version of this article (doi:10.1186/s12910-016-0134-0) contains supplementary material, which is available to authorized users. An understanding of the perceptions of medical professionals and the general public, including patients, regarding medical error is required to improve patient safety , 2. FurtTo promote the communication of patient safety incidents to patients and their caregivers, open disclosure programs and policies are being adopted in several countries –11. The However, the experience with open disclosure is restricted to certain western countries . FurtherWe performed 20 in-depth interviews (IDIs) and four focus group discussions (FGDs) to explore and compare the in-depth perceptions of study participants regarding open disclosure. A total of 34 individuals participated in this study Tables  and 2. WThe research team consisted of four members. Three of the team members  had previously participated in other studies into patient safety. Two of the team members (MO and HJK) had repeated experience in conducting and publishing qualitative studies.IDIs were conducted with 10 members of the general public and 10 physicians. We operationally defined the general public as persons with no license or certificate in the medical area. We recruited members of the general public with a college diploma in their 30s or 40s, considering comparability with the physician participants. At the beginning of recruitment, IDI participants were purposively selected from personal contacts of the authors and we additionally recruited participants recommended by the early IDI participants. Therefore, in terms of reflexivity, we cannot exclude the possibility that the IDI participants were not completely open with the researchers and tried to ingratiate themselves with the interviewer. There was no one who refused to participate in and dropped out. IDIs were conducted in a quiet room in a hospital from April 2015 to June 2015. One author (MO) interviewed the participants according to the semi-structured guidelines. The interview lasted about 1 h on an average and was audio-recorded.We conducted four FGDs. The participants of the first FGD were the general public, whereas physicians participated in the second FGD. The participants of the third and fourth FGDs were a mixture of the general public and the physicians from the first and second FGDs. Six to eight participants were involved in each group. We selected physicians with experience of patient safety incidents, as in the IDIs, to participate in the FGDs, but Gallup Korea recruited the general public participants of the FGDs by selecting individuals who were interested in medical accidents and aged in their 30s to 50s. Therefore, we judged that the general public participants of the FGDs could talk freely in terms of reflexivity, although there was a possibility that the physician participants of FGDs might not have felt open to frankly discuss sensitive issues such as experiences with patient safety incidents. No physicians refused to participate in the FGDs. However, we cannot determine the number and characteristics of the general public who refused to participate in the FGDs because Gallup Korea recruited these participants among the panel members established by Gallup Korea. The FGDs were conducted in a one-way mirror room at Gallup Korea. One author (MO) and one professional interviewer from Gallup Korea led the discussion according to the semi-structured guidelines, similar to the IDIs. All FGDs were conducted in May 2015. Each FGD lasted about 2.5 h on average and was audio- and video-recorded.We developed the semi-structured guidelines for IDIs and FGDs based on a systematic review of open disclosure . The guiBefore conducting the IDIs and FGDs, we clarified a definition of terms related to patient safety to the participants. We defined patient safety incident as “an event or circumstance that could have resulted, or did result, in unnecessary harm to a patient and medical error as “a failure to carry out a planned action as intended or application of an incorrect plan”, in accordance with “Conceptual Framework for the International Classification for Patient Safety” from the World Health Organization . We alsoThe audio recordings from the IDIs and FGDs were transcribed verbatim. Transcripts were not returned to participants for comment or correction. We applied a directed content analysis by analyzing the verbatim transcripts and field notes in accordance with the predetermined guidelines of IDIs and FGDs . One autn = 20; Table n = 14; Table A total of 34 individuals participated in the IDIs : Yeah, it should.Interviewer: Why so? For its own benefits? Or do you have other reasons in mind?In-Depth 7 (Physician): Of course, such benefits can be considered. But, rather, first the patient, the caregiver or the patient, should understand the situation and what s/he is getting. Even if things go badly, the person in question has to know what is precisely being done to himself/herself. In a sense, it is a moral responsibility.All of the participants in this study, both the physicians and the general public, acknowledged the need for open disclosure. In essence, many suggested that open disclosure is required in its own right, regardless of its impacts or benefits. That is, they felt that open disclosure is a physician’s moral responsibility and that patients’ and their caregivers’ have a right to know this information. Therefore, physicians with a clear conscience would conduct open disclosure and those who neglect to do so could never be considered honorable. Moreover, participants considered that open disclosure is an imperative, especially for the healthcare field because it deals with matters affecting life and death.Skeptical stance of physicians on the effect of open disclosure on reducing medical lawsuitsInterviewer 2: It may be a foreign case, but studies do show reduced numbers in medical lawsuits upon adoption of open disclosure. What are your thoughts on that? I am talking about a decline in overall filings.Focus 6 (Physician): Well, if that’s what we’re after, we cannot be more mistaken. The number of attorneys are on the rise, you know.Focus 3 (Physician): Brokers barge into the ICU.Focus 6 (Physician): I have a friend who’s a lawyer and s/he says they are increasingly facing the same thing....Interviewer 2: But the number of attorneys is higher in the States, isn’t it?…Focus 6 (Physician): It worked and the numbers dropped. Really? Haven’t read any papers on it.The well-known benefits of open disclosure, such as reduced number of medical lawsuits, improved level of patient trust in physicians, increased willingness to revisit the physician/hospital, higher patient satisfaction, and lessened physician guilt were generally accepted by participants. However, some were skeptical. In particular, physicians were cynical of the effect of open disclosure on reducing lawsuits; they forecasted that the fall in the number of medical lawsuits would be hindered by Korean laws and the healthcare milieu.Need for open disclosure of medical errors causing severe harmInterviewer 2: In this case , do you think open disclosure should be implemented?Focus 3 (Physician): Yes, I do.Focus 2 (Physician): Sure. I feel sorry, emotionally and not only that… I feel very……Interviewer 1: How about others?Focus 10 (Layperson): I think open disclosure should be implemented, too. A physician’s malpractice resulted in death of a patient, so I’m guessing the physician should be feeling quite guilty. Open disclosure is definitely needed.In deciding when to conduct open disclosure, there was discordance among participants according to the characteristics of the patient safety incident. First of all, physicians and the general public agreed on the need for open disclosure in the event of medical errors that cause severe injuries. A medical error leading to severe harm is an indisputable event. Therefore, many suggested that such a trait leaves physicians no choice but to conduct open disclosure. Meanwhile, others pointed out the possibility of concealing, rather than disclosing, medical errors resulting in severe injuries.Pessimistic perspectives of physicians on the need for open disclosure of apparent medical errors causing minor harmFocus 6 (Physician): I suppose medical errors causing minor harm will be even more problematic.Interviewer 2: Because patients will know nothing of it if the physician keeps quiet?Interviewer 1: You know you should say something, so you are facing a dilemma as a doctor?Focus 3 (Physician): Hmmm. I’d rather not say. This is a matter of preference, I think. The patient might not feel the need either. Telling the truth is the right thing to do, but since nothing really happened, I guess doctors would be inclined not to do so.Focus 6 (Physician): If I were a patient, I’d rather not know.On the other hand, comparative comments were made for medical errors that resulted in minor harm. For such errors, open disclosure could be practiced without much stress, so the likelihood of implementation is high. However, one physician mentioned that s/he would inform the hospital patient safety reporting system of medical errors resulting in minor harm but would not practice open disclosure with the patient and the caregivers; another participant voiced concern over such a comment, stressing that it will decrease the patient’s trust in medical staff and reduce their willingness to revisit the hospital. In particular, physicians mostly assumed that patients would not want to know about medical errors causing minor problems.Perspective of a participant from the general public group on the need for open disclosure for near missesIn-Depth 19 (Layperson): I needed some time to think. Would open disclosure be necessary when nothing actually happened? Would it be okay not to say anything because nothing happened?Interviewer: Wouldn’t sweeping it under the rug make things easier for both the patient and the doctor?In-Depth 19 (Layperson): Actually, it did come across and it’s become a real hang-up for me…Interviewer: But you support open disclosure in spite of that because…?In-Depth 19 (Layperson): Because I have been in that situation. It occurred to me that I should be aware of how it could seed a dispute. Plus, if I were to appeal a malpractice later on, I’d better learn the facts at least. I may or may not have complications, but if certain symptoms do occur and say it causes problems… I’ve thought it over and over and it led me to the conclusion that honesty is the best policy.Physicians were markedly against carrying out open disclosure for near misses. They were skeptical of the need for open disclosure and determined that it would increase neither the patients’ nor the caregivers’ trust in physicians. However, most participants from the general public and a few physicians demanded open disclosure for near misses for the future reference of patients and to prevent recurrence.Need for an apology for inapparent medical errorsFocus 14 (Layperson): Whether the doctor admits it or not, an apology is a must. The mind and the body are not separate, you know. The mind is actually connected to the body and directly affects it, so the patient ought to have been extremely confused and troubled. I mean, the least you could do is to admit that they’re liable and apologize. Say, “I’ve tried my best as your doctor and I am sorry for the unintended consequences.”Finally, almost all physicians had negative views on practicing open disclosure of inapparent medical errors. Many physicians found it difficult to implement open disclosure in vague situations and pointed out how hard it is to manage such situations. On the other hand, a number of participants from the general public group set forth their opinions on the need for expressing regret and apologizing even for inapparent medical errors. Furthermore, there were demands for compensation for the harm done to the patient, irrespective of the characteristics of the medical error.Differences between the perspectives of physicians and the general public on patient safety incidentsFocus 5 (Physician): To bring our attention back to this issue, as you have seen here, the major premise is that a patient safety incident had occurred. But the thing is… the standpoints of seeing this as a patient safety incident vary. Doctors do not consider it such an incident.In particular, certain physician participants admitted that there is a gap between the perspectives of the general public and physicians about which particular adverse events are subject to open disclosure and whether a medical error has occurred or not. Moreover, they required a proactive approach when dealing with open disclosure of all patient safety incidents.Need for incident explanations in open disclosureIn-Depth 8 (Physician): Whatever the case, you should give an explanation to the caregivers. On why you did it and how things can go wrong.Interviewer: And what makes you think you should inform them?In-Depth 8 (Physician): Well, isn’t it natural for them to want to know? All of a sudden, a patient dies after a surgery. Sure, the odds of death from surgical complications, one in a million and whatnot, are well known. But they probably wouldn’t have imagined anything like it happening in their own life, not in a million years.Interviewer: Then, it’s for appropriateness? Because you ought to or is it out of some sort of ethical conscience?In-Depth 8 (Physician): It’s designated in medical ethics, and aren’t we mandated to inform the caregivers because it’s just right?The four elements of open disclosure—providing explanation, showing sympathy and guaranteeing future investigation, offering an apology, and promising adequate amount of compensation and effort to prevent recurrence—were reviewed in this qualitative study. Firstly, most participants, including several physicians, and particularly the bulk of participants belonging to the general public group supported the early stages of open disclosure, such as providing explanation, showing sympathy, and guaranteeing future investigation. The emphasis was on the importance of reassuring the patient, providing emotional comfort, and promising investigation of the matter when a patient safety incident occurred. Particularly, incident description and sympathy expression were considered essential elements of open disclosure. Thus, omitting them would tarnish the meaning of the other elements. In addition, there were opinions on the need for an explanation despite the ambiguity of the medical error.Importance of delivering an apology in open disclosureFocus 7 (Layperson): The main target of open disclosure seems to be obtaining sincere apologies from physicians. Apart from money, as a human being, one-on-one… When a patient is harmed or dies, we want a wholehearted apology. Medical disputes come later. Money and whatnot comes second.Interviewer 2: I’d like to speak on behalf of physicians because they found that “it all comes down to money”.Focus 7 (Layperson): Not all people are like that. A good tongue is a good weapon, you know. With a heartfelt “sorry”…Focus 1 (Physician): But let’s say your father had passed away. He was the one providing for the family. So, now you are all of a sudden out of money. Will an apology do? Your mother died so now you need to hire a housekeeper. Will it do? It goes the same for a child too. A kid does not even support the family, but most people seem to consider financial compensation a sincere way of apologizing.Focus 10 (Layperson): Money is not the best policy.Focus 7 (Layperson): Money is not a cure-all. Father’s gone. The only source of family income is gone now and no sincere apology or whatsoever will replace him. But if doctors take responsibility and apologize for my loss, I would take it on my own shoulders even when I have to earn a living for myself. Because I accepted the apology.Secondly, many participants showed emotional support for an apology, which is the second element of open disclosure. The general public mainly argued that if harm occurs due to medical error, an apology should come before compensation and will bring about emotional relief. However, for fatal accidents, some participants from the general public group mentioned concerns regarding the acceptance of apologies because their power was limited.Apology not regarded as admitting negligenceIn-Depth 19 (Layperson): When such a case arises, it’s saying sorry for what’s happened and any wrongdoing possibly caused by the medical staff, for example. And it doesn’t necessarily mean you are admitting negligence. At first, when people are in a fury or are upset, they may take it as an admittance [of guilt]. But after they cool down and think about it, I don’t think they will take it that way. And, personally, I wouldn’t.In addition, not only the physicians, but also the general public insisted on an apology only when a medical error occurred. However, there were few opinions from the general public on how they would emotionally prefer an apology, with some admitting that it is rationally unnecessary. Most participants distinguished between sympathy and an apology but had trouble defining them. One of the participants who belonged to the general public group suggested that an apology cannot be considered an admission of medical error or negligence, depending on the expressions used and underlying context.Compensation unnecessary for inapparent medical errorsIn-Depth 12 (Layperson): I don’t see any need for compensation. If it’s not an error, an apology will do. Compensation is absolutely unnecessary and saying sorry for the inconvenience caused seems fine.Interviewer: Isn’t it unfair for the patients? They came to a hospital in the hopes of getting better, but end up with a longer hospital stay and additional treatment.In-Depth 12 (Layperson): Now that’s something we have to work on. “Due to this condition, this rare, probability of one or two percent, complication occurred. That is why you need further treatment and I am sorry for the inconveniences caused.” Good enough. You do not need to provide compensation.Thirdly, most participants from both groups urged a guarantee of adequate compensation if the medical error was clear. When the medical error is not apparent, physicians need not promise compensation. Furthermore, some thought that an adequate amount of compensation for adverse events would prevent disputes. However, there were worries about how the ambiguity of the word “adequate” could cause difficulty in determining the amount of compensation.Skeptical perspectives of physicians on a promise to prevent recurrenceInterviewer: Do you think promising to prevent recurrence is a different matter?In-Depth 2 (physician): I think education is a prerequisite if we were to jump into that. But in this situation where everyone’s growling at each other… I think it’s better not to…Interviewer: Even if it’s for future recurrence prevention?In-Depth 2 (physician): That’s a promise you have to make for yourself, not to the patient or the caregiver…Fourthly, discordance between the perspectives of physicians and the general public became apparent in the fourth element of open disclosure, promising to prevent recurrence. Several physicians did not feel the need to promise prevention. Furthermore, similar to apologizing and assuring adequate compensation, they refused to accept the fourth element when the medical error is not apparent.Need to promise recurrence prevention in ambiguous medical errorsInterviewer: Then, how about assuring recurrence prevention?In-Depth 18 (Layperson): Well, this is a must, whatever the case.Interviewer: But you can only promise something when you know what you’ve done wrong, no? If the doctor seems clueless, would his/her apology sound sincere to you?In-Depth 18 (Layperson): What I’m wondering is… Is the doctor confident about his actions in this situation? Completely positive?Interview: S/he may or may not.In-Depth 18 (Layperson): Even if it’s not a detailed apology, I’m sure when doctors say how sorry they are for what happened and reassure [the patients] that they’ll make an effort to reduce possible complications, the patients will go back home feeling much better. No benefits whatsoever, but credibility will soar, I reckon.However, many participants from the general public insisted on a promise of recurrence prevention to the patient and the caregiver, because they thought that prevention itself should be our ultimate aim. In addition, despite the ambiguity of the error, prevention was deemed important to identify the hidden factors behind the incident.Physicians’ styles in carrying out open disclosureFocus 6 (Physician): I don’t literally bring up the word “regrettable”, but I do it eventually.Interviewer 2: How do you express it without actually saying [the word]?Focus 3 (Physician): Like, “You won’t be able to go home, unfortunately”.Focus 6 (Physician): “We need further tests”.Interviewer 1: Without using the word “sorry”?Focus 3 (Physician): It’s a Korean thing that you don’t really need to put into words to…Focus 6 (Physician): “We need more tests”.Focus 3 (Physician): The biggest problem is when you’re about to discharge your patient after stitch removal, the last step of the surgery, the wound starts to open up. It’ll drive you crazy and what can you say to the patient? “Seems like you can’t go home today”.Focus 2 (Physician): That’s the Korean way of saying sorry.Focus 3 (Physician): You don’t really need to say it through words.Focus 5 (Physician): But surely there’s a gap between how doctors and patients feel.Generally, physicians were aware of the significance of successful implementation of open disclosure. However, they did not know how to carry it out. Furthermore, they shared their experiences on how inappropriate or imperfect open disclosure either provoked negative responses or turned out to be ineffective. They also seemed to have acquired certain coping skills, such as avoiding bringing up words or phrases that might trigger hostile reactions from patients. Meanwhile, some could not practice open disclosure even under compulsory circumstances.Offended by inadequate delivery of apologyFocus 14 (Layperson): The apology did not make me feel any better. ‘Cause I knew how inattentive the head nurse at that floor was. I kept my eyes on that child 24/7, except for that 30 min, during which time the tragedy occurred. If I hadn’t come across it, who knows what would’ve happened? But that grumpy chief nurse just wouldn’t listen to me.Interviewer 1: Did she apologize?Focus 14 (Layperson): Technically, yes. Only because the director of the hospital told her to.Interviewer 1: What do you think about that?Focus 14 (Layperson): Completely fake. She kept on fussing about things so I had a word with the director of the hospital. I told him to fire the nurse. I mean, what is he gonna do if tragic accidents occur?However, the general public felt offended by inadequate apologies and consequently felt neglected in other medical areas as well.Ways to express sincerity during open disclosureInterviewer: Then, how does a person know that s/he’s cordially, honestly trying to express sympathy?In-Depth 1 (Physician): Hmmm… It’s tough.Interviewer: What can I do to make them understand and show how deeply I connect with them? Sounds pretty hard, I know…In-Depth 1 (Physician): You’re right. How should I put this… Nothing really comes to mind.Interviewer: Have you had any experiences like this?In-Depth 1 (Physician): As in having no one believing in what I have to say, even when I’m being honest?…In-Depth 1 (Physician): Truth be told, I think there’s no magic in doing it. Having conversations often can work too, I guess. We go on rounds several times a day, so it’s doable.Interviewer: Then, you’re saying frequent interactions are important for open disclosure?In-Depth 1 (Physician): Possibly. Of course, it’s not the number of contacts that’s important… Or, you know, we can talk while we look at charts or images and those things are good backups for conversations. It’ll be much better than face-to-face talks, no? I don’t know how I should put this…In particular, most participants could not present a clear-cut means to deliver empathy and apology, the two elements of open disclosure, in a cordial way. However, they expected that sincerity would be expressed through the following: precise and detailed explanations, use of charts and data, and investing time in counseling. Additionally, one physician felt that more time spent with the patient reinforced the persuasiveness of his/her explanation. One participant from the general public group pointed out that a sincere apology can be intuitively distinguished from an apology that is feigned.Absence of open disclosure educationFocus 3 (Physician): I have never learned (open disclosure). Can’t make facial expressions. Can’t come up with words to say……Focus 1 (Physician): I have never seen anyone do it, so I don’t have a clue on how to do it.…Focus 1 (Physician): Not only that, but also IV fails, tapping fails, bone marrow (aspiration) fails in the ER… These days, I am affiliated to an online club of moms of pediatric cancer patients as an observer. They talk about all kinds of things there. One of the things that grabbed my attention was how moms were upset after repeated failures and no apologies from doctors. Moms were very upset. Failed procedures were making their kid suffer in pain, but doctors would smile and walk away. We can imagine why doctors would smile in such situation. They were embarrassed and that’s probably why they smiled awkwardly. Moms get furious because their babies are sick. But, in fact, we are extremely sorry, but we just don’t know how to express or convey it.Measures to promote open disclosure can be classified into four categories: educating medical staff about open disclosure, improving the medical environment as a whole, introducing open disclosure guidelines, and reforming the legal framework. First of all, most physicians acknowledged the importance of open disclosure education. They confessed that they had never received training on doctor-patient communication, much less on open disclosure. Thus, from their own experience, physicians were afraid of how the patients and caregivers would react to the disclosure of a patient safety incident. In addition, their fear over miscommunications placed greater strain on the implementation of open disclosure.Difficulties of open disclosure due to exclusive organizational cultureInterviewer: Will open disclosure be possible in Korea?In-Depth 20 (Layperson): No.Interviewer: Why not?In-Depth 20 (Layperson): Systematic problems should be resolved to invigorate the practice of open disclosure, but internal relationships among doctors are just as important. I mentioned talking to the supervising doctor because I heard how the medical community resembles the military. If you are at arm’s length with someone, when you tell them “I’ll say it”, then they will show sympathy or not. However, in a strict environment, where they can sort of command you not to say, then it will be tough.Secondly, not only most physicians, but also a considerable number of participants from the general public showed support for improving the medical environment, that is, the patient safety culture of hospitals. In reality, even with hospital approval, it is not easy to perform open disclosure, and the hierarchical hospital culture that involves apprenticeship and the traditional “blame culture” was indicated as a factor further impeding open disclosure. One physician grimly forecasted the likelihood of practicing open disclosure in a setting where physicians are instructed by supervising physicians or consultants to not apologize.Need to establish a system for open disclosureInterviewer: You mentioned that it’s a systematic problem (as to why open disclosure cannot be practiced), so what kind of system should there be?In-Depth 11 (Layperson): There should be a legal team or some sort of personnel to consult when such things happen. By the way, do physicians know how to manage certain situations when they come up?Interviewer: I’m not sure.In-Depth 11 (Layperson): They probably won’t, I guess. So, there should be expert team for that.Thirdly, several of the participants requested establishment of a system after the introduction of open disclosure guidelines because single-handed open disclosure is tough and prior preparation is needed. Some called for a dedicated team or experts responsible for open disclosure. However, others negatively viewed the effects of guidelines on the actual implementation of open disclosure, demanding an improvement in the overall medical environment.A participant from the general public group supporting an apology lawIn-Depth 20 (Layperson): For now, it will definitely invigorate open disclosure. But, now that I think of it, patients might not consider open disclosure sincere in severe cases. It won’t feel like doctors are being 100 % frank. It’ll give the impression that they are trying to duck out of responsibility and say sorry at the same time, so I guess it won’t make patients any happier.Interviewer: Okay.In-Depth 20 (Layperson): Nevertheless, it’s a necessary evil. When such a system is nonexistent, these things will never be disclosed to begin with. It’s like a necessary evil.Finally, participants were asked how they viewed the apology law and open disclosure law in light of the legal reform. Many agreed on the purpose and the need for an apology law to facilitate open disclosure. In other words, the apology law could dispel concerns among physicians who worry about having an apology used against them in court. Meanwhile, several others doubted the likelihood of the introduction of an apology law and its usefulness. Some physicians even suggested the possibility of an increase in medical lawsuits filed by patients informed about patient safety incidents that would have been overlooked without open disclosure. In addition, some participants from the general public expected an increased number of patient-doctor conflicts in Korea upon the introduction of open disclosure compared with the United States. One participant from the same group thought that empathy or apology expressed under the apology law would hardly be sincere. Moreover, several physicians predicted that open disclosure would be practiced only in incidents that are distinct to the patients or the caregivers.Participants from the general public group supporting an apology law even when patient’s admissible evidence can be taintedInterviewer 2: How do you feel about the fact that an apology law could restrict the admissibility of patients’ statements?Focus 3 (Physician): It’s almost impossible to prove medical negligence, for your information.Focus 9 (Layperson): Are you saying that there’s favoritism toward physicians?Focus 1 (Physician): Statement itself is not accepted as evidence. Let’s say a doctor admitted negligence verbally. But it simply has no power in court.Interviewer 2: Not considered a confession… Are you really okay with this? It’s not easy to prove.Focus 7 (Layperson): If a doctor says, “there was an error in medication administration” in open disclosure, the statement cannot hold him/her liable, huh?Focus 3 (Physicians): Instead, you should present other data to prove erroneous drug administration.Focus 7 (Layperson): Conversations can easily be manipulated in situations where medical disputes arise or someone dies from malpractice. If you can mess with medical records, why not with words? The victims rightfully deserve the doctor’s apology. And, regarding the liability issue of doctor’s statements, I guess I’m okay with it.Participants expressed doubt about the adoption of an apology law because of the differences between the legal systems in the United States and Korea. However, despite the probability of weakening a patient’s ability to prove medical malpractice in court, most people from the general public were still in favor of an apology law. However, some insisted on imposing limitations on the starting time of open disclosure in order to enact an effective apology law. Therefore, they suggested protecting open disclosures that have been carried out within a certain time after the occurrence of the patient safety incident or when it is acknowledged by physicians.We conducted 20 IDIs and four FGDs with 16 physicians and 18 members of the general public to explore and compare their in-depth perceptions of open disclosure. We found specific findings under the various aspects of open disclosure in terms of the “five Ws and one H”. We also compared the differences and similarities between physicians’ and the general public’s perceptions of open disclosure. The key findings from this qualitative study will help to promote a more positive view of open disclosure and to develop open disclosure guideline policies in hospitals. In particular, this study will broaden the understanding of open disclosure in non-western countries because studies on open disclosure are often scarce in non-western countries.Although there are concerns that open disclosure is less suited to non-western countries , all of The well-known benefits of open disclosure, such as a reduced number of medical lawsuits, improved level of patient trust in physicians, increased willingness to revisit physicians/hospitals, higher patient satisfaction, and ameliorated guilt in physicians, add value to open disclosure . These bAnother remarkable issue concerns when open disclosure should take place. Most importantly, there were discrepancies between physicians and the general public on the objectives of open disclosure according to the characteristics of the patient safety incidents. First of all, the participants generally agreed on the need for the open disclosure of medical errors causing severe harm. However, some physicians mentioned that they would not conduct open disclosure for medical errors causing minor harm. Furthermore, some physicians expressed marked negativity toward open disclosure of near misses, similar to the findings of previous studies , 29. In Almost all physicians had negative views on open disclosure of inapparent medical errors. However, we believe that these perceptions were caused by the physicians’ misconception that open disclosure only involves apologies for mistakes. When we divided open disclosure into four key elements, namely, providing explanation, showing sympathy and guaranteeing future investigation, offering an apology, and promising adequate amount of compensation and effort to prevent recurrence, providing explanation and showing sympathy and guaranteeing future investigation were also necessary in inapparent medical error cases. Although most of the general public insisted on an apology only when medical error occurred, incident description and sympathy expression were considered essential elements of open disclosure, even for ambiguous medical errors. Medical professionals, including physicians, therefore need to be educated about the key elements of open disclosure. Furthermore, guidelines for open disclosure according to the type of patient safety incident are required to encourage physicians to more readily conduct open disclosure.In this study, almost none of the interviewed physicians knew how to successfully conduct open disclosure and some reported bad experiences, namely, that inadequate or imperfect open disclosure either provoked negative responses or turned out to be ineffective. Consequently, many physicians seemed to have acquired certain coping skills and they did not practice open disclosure even in situations requiring open disclosure. On the other hand, the general public felt offended by the inadequate open disclosures and felt neglected in other medical areas as well. Therefore, help is required so that physicians can effectively and appropriately carry out open disclosure.In order to successfully perform open disclosure, a systematic approach, including the development of education programs and guidelines, should be emphasized rather than an individual approach treating open disclosure as an entirely private matter –32. EtchIn general, a focused improvement in the system and medical environment more effectively improves the level of patient safety than blaming and punishing individuals . This isThe participants in this study had both positive and negative opinions on apology laws to protect open disclosure. In fact, although western countries such as the United States and Canada have enacted such apology laws, there are no examples of such legislature in non-western countries . TherefoThis study had some limitations of note. First, we did not recruit primary care physicians. Furthermore, other medical professionals such as nurses and allied health professionals, were not included. Further research that includes these types of medical professionals is needed to confirm and generalize the findings of this study. In particular, it would be meaningful to determine the attitude of nurses toward open disclosure as they are typically at the “sharp end” of patient care. An additional limitation was that we only recruited members of the general public with a college diploma. Although it seems that there has been no research on differences in perception regarding open disclosure according to education level, further research that includes a wider sample of the general public is needed to determine the general perception regarding open disclosure. Lastly, we cannot exclude the possibility that the IDI participants and FGD physician participants were not completely open with the researchers and tried to ingratiate themselves with the interviewer in terms of reflexivity.Both physicians and the general public in Korea acknowledge the need for open disclosure of patient safety incidents. They suggest that open disclosure has its own value in terms of patient safety and in promoting patient-centered care and they generally accepted the benefits of open disclosure. However, it is difficult for individual medical professionals to conduct open disclosure without support. Guidelines for open disclosure according to the type of patient safety incident are required to encourage physicians to more readily conduct open disclosure. Furthermore, hospitals need to consider organizing a dedicated team and hiring experts for open disclosure.


The aim was to investigate patients’ perceptions of palliative care quality t-test and analysis of covariance while controlling for differences in patient characteristics.A cross-sectional study including 191 patients in late palliative phase (73 % response rate) admitted to hospice inpatient care, hospice day care, palliative units in nursing homes, and home care was conducted, using the Quality from the Patients’ Perspective instrument-palliative care (QPP-PC). QPP-PC comprises four dimensions and 12 factors; “medical–technical competence” (MT) (2 factors), “physical–technical conditions” (PT) (one factor), “identity–orientation approach” (ID) (4 factors), “sociocultural atmosphere” (SC) (5 factors), and three single items (S); medical care, personal hygiene and atmosphere. Data were analysed using paired-samples within settings showed high scores for the factors and single items “honesty” (ID) and “atmosphere” (S) in all settings and low scores for “exhaustion” (MT) in three out of four settings. Patients’ perceptions of importance scored high for “medical care” (S), “honesty” (ID), “respect and empathy” (ID) and “atmosphere” (S) in all settings. No aspects of care scored low in all settings. Importance scored higher than perceptions of care received, in particular for receiving information. Patients’ perceptions of care across settings differed, with highest scores in hospice inpatient care for the dimensions; ID, SC, and “medical care” (S), the SC and “atmosphere” (S) for hospice day care, and “medical care” (S) for palliative units in nursing homes. There were no differences in subjective importance across settings.Patients’ perceptions of care received Strengths of services related to identity–orientation approach and a pleasant and safe atmosphere. Key areas for improvement related to receiving information. Perceptions of subjective importance did not differ across settings, but perceptions of care received scored higher in more care areas for hospice inpatient care, than in other settings. Further studies are needed to support these findings, to investigate why perceptions of care differ across settings and to highlight what can be learned from settings receiving high scores. In developed countries, the number of patients in need of palliative care will continue to increase because more people are living longer, often with complex needs as a consequence of chronic illness or cancer over long periods of time , 2. ModePatients’ perspectives about their care have been highlighted as being of the utmost importance in the evaluation and further development of quality in healthcare, in general , 9–12, aPalliative care comprises different types of services, e.g. home care, day care and inpatient services; however, the structure of these services may differ from one country to another . PalliatPalliative care has been criticized for being developed to include mainly patients with cancer. Consequently, the care for patients with other life-threatening illnesses does not equal the care for patients with cancer –26. ThisIn the present study quality of palliative care is based on a model from Wilde et al.  in whichPreviously patients’ perceptions of important aspects of palliative care have been found to be, for example; a focus on living a meaningful life, experiencing trust, compassionate and respectful care; participating in effective communication and shared decision-making , and; rewithin different settings of palliative care is important for the identification of areas for improvement. Furthermore it is important to identify the strengths of each of these settings, thereby guiding further development of specific settings. The research mentioned above has included and compared patients’ views about important aspects of care and the care received , PT , ID , and SC . No significant differences were found between the SI dimensions and the independent variables “levels of education” and “number of diagnoses”. No interaction effect was statistically significant for any of the dimensions. Results for the SI scale showed no statistically significant differences between patients’ perceptions of the importance of aspects of care and settings for the single items with regard to medical care: , personal hygiene , and atmosphere . For the single item “personal hygiene”, there was a significant difference between patients’ perceptions of SI and the independent variable “levels of education” . Patients with primary or high school education scored the importance of personal hygiene higher than patients with university education (P = 0.003).Results for the SI scale showed no statistically significant differences between patients’ perceptions of the importance of aspects of care and settings for the following dimensions: MT [P <0.001). Patients in hospice inpatient care and palliative units in nursing homes care who had university education scored higher, whereas patients in hospice day care and home care who had university education scored lower. Interaction effects were also found between personal hygiene and levels of education (P = 0.006), where patients in hospice day care, palliative units in nursing homes, and home care with primary and high school education scored higher and those with university education scored lower, whereas patients in hospice inpatient care with university level education scored higher and those with primary and high school education scored lower.Interaction effects were found for the single item about medical care between settings and educational levels  and the importance of care aspects (SI). For other areas, SI scored higher than PR. The results for the comparison across settings indicate differences in patients’ perceptions of their care across the settings, but no differences in the importance that patients perceived their care.The participants in the present study differed across the four settings by age, education, type of diagnosis, number of diagnoses, and time in care, but did not differ with regard to their sense of coherence, psychological wellbeing, or health-related quality of life. Patients’ perception of their care ability of services to meet patients’ preferences for care: care aspects with no significant difference between PR and SI  could indicate that patients perceived that the care received is in line with the perceived importance. Aspects of care that received the highest scores for PR and SI  could imply that patients perceived they had received high-quality care on those aspects of care that were most important to them (strengths). (2) Areas for improvement: care areas in which SI was significantly higher than PR may be seen as areas for improvement, in that patients perceived that insufficient attention was given to the care aspect of importance to them. The possibility of the PR score being statistically higher than the SI one may also be present. This could be interpreted as the care received being perceived as better than patients’ preferences. Furthermore, the results are discussed in terms of the aspects of care in which a service’s ability to meet patients’ most important care preferences was high , to illuminate the service’s strengths and discuss care areas for improvements. When interpreting the highest and lowest levels of QPP-PC scores, there is no right or wrong, and also no cut-off value. The values presented as highest (≥3.55) and lowest (<3.00) in the present study are in line with a previous study of a similar patient population [The results of patients’ perceptions of care quality within settings (comparing PR and SI scores) may be interpreted in two ways , 60: (1)pulation .The question of what levels of care are “good enough” may arise when discussing strengths and areas for improvement. Of course, from a policy-maker’s point of view, the total amount of resources and the quality of care for all patients in need of palliative care must be considered. However, healthcare systems are required to deliver high quality services and establish systems to obtain feedback from patients to be used in quality improvement work , 5. In aThe ability to meet patients’ preferences was frequently present with regard to treating patients with honesty, respect, and empathy, the planning and cooperation of services, medical care and provision of a safe and pleasant atmosphere. Studies that previously evaluated quality in inpatient hospice contexts showed similar findings , 62, apaAreas for improvement in the present study seemed to be related to the factor “participation”. This factor comprised questions about the opportunity to participate in the decisions that applied to medical care, nursing care, individual care planning, and choice of where to receive care. Within this factor it was the item about participation in the place of care that showed a statistically significant difference, indicating that patients prefer to be involved in decisions about place of care. There have previously been descriptions of patients’ preferences for place of care and place of death not being met . Policy-Grande  has statThe strengths seem to be related to personnel approaching patients with honesty, respect, and empathy, and that the atmosphere was perceived as pleasant and safe. Previous research supports the findings of the present study with regard to patients perceiving that hospice day care provides high-quality care for the sociocultural and identity-oriented aspects of care , 64, 65.Although the medical care within hospice day care received high scores, its perceived importance scored even higher. Hospice day care may be organized as a supplement to other care services, and has previously been described as having either a “medical” or a “social” focus of care , and thaAreas for improvement seemed to be related to the ID dimension and within this dimension the care aspect “information”. Within “information”, information about diagnosis and symptoms, prognosis, medication, and self-care showed significant values. The factor “planning and cooperation of service” is an area for improvement, and within this factor it was planning of nursing care, cooperation between personnel, and coordination of all services that the patient received that showed significant values. Parts of these findings contradict the findings of other studies in which patients perceived that the information received about living with their disease was sufficient  and thatThe strengths of the palliative units in nursing homes seemed to be related to the PT dimension, including access to help, food, and equipment. In addition, the strengths related to giving honest answers to questions, care of relatives and friends, a pleasant and safe atmosphere in the wards, and sufficient care of personal hygiene. A study from a family perspective confirms that access to food (help eating) and personal hygiene (mouth care) were more frequently present for patients enrolled in specialized hospice care programs in nursing homes . In addiAreas for improvement seemed to be related to the ID dimension and, within this, receiving information related to diagnosis and prognosis had significant values. A study from nursing homes providing non-specialized palliative care confirms the need for improvement with regard to information about medical issues . FurtherThe strengths of the home-care settings seemed to be related to honest answers to patients’ questions. Honesty is recognized as an important aspect of the relationship between patients and healthcare personnel in palliative care ; to our Areas for improvement seem to be related to the ID dimension and, within this; the factor about information – specifically, information about prognosis, diagnosis, and who is the responsible nurse for the patient – was statistically significant. In addition, improvement seemed to be needed for the MT dimension, including symptom relief and medical care, and SC dimension, including meaningfulness, continuity and planning, and cooperation of care services. Previous research supports the need for improvement in similar care areas for people living at home , 71–73, Patients in hospice inpatient care and hospice day care were significantly younger and there were higher proportions of patients with cancer, which is in line with previous studies describing hospice inpatient characteristics , 74–76. P = 0.027) in the caregiver’s identity-oriented approach (ID dimension). Hospice inpatient and day care scored higher than home care with regard to the sociocultural atmosphere (SC dimension). Hospice inpatient care and palliative units in nursing homes scored higher than home care with regard to medical care. Specialized palliative care in dedicated hospice inpatient care and nursing homes has been shown to be beneficial compared with settings that do not specialize in palliative care [The results indicate that there are differences in how patients perceived the actual care received (PR) across the different settings, although there are no differences when it comes to the perceived SI of the care aspects. Hospice inpatient care scored significantly higher than the palliative units in nursing homes, and tended to be higher than the scores for home care .There are, however, some limitations to the present study. The participants were recruited from hospice inpatient care, hospice day care, palliative units in nursing homes, and home care. Patients receive palliative care from contexts other than those included in the present study, e.g. general hospital wards, and community-based non-specialized wards in nursing homes. In addition, participants in the present study mainly had diagnoses of cancer, which could be explained by the fact that some of the settings included cared mainly for patients with cancer. The present study cannot therefore claim to have included either all relevant settings or a representative sample of the population. We have, however, provided a comprehensive description of the eligible criteria and the patient sample in each setting to clarify who was included. The interpretation of the findings must be based on the population included. A strength is that patients’ perceptions of important aspects of care did not differ across the groups of patients in the four settings included. This could mean that what is considered important to patients about their care may not be related to the settings, and therefore could be transferred to other settings. This is in line with previous studies investigating important aspects of care in a variety of settings , 28.Validated instruments were used to measure quality of palliative care . For thet-test, and found that patients who had help filling out the questionnaire scored significantly lower on the PR scale for one dimension – ID dimension (P <0.001) – and for the single item about medical care (PR) (P = 0.024) than patients who completed the questionnaire with no such help. More patients were interviewed in the palliative units in nursing homes and home-care districts than in hospice inpatient, indicating that the data collection method could have affected the results of the present study; this showed that patients who were hospice inpatients scored higher than those in palliative units in nursing homes on the ID dimension and higher than homecare for the item about medical care, on the PR scale. On the other hand, for the item about medical care (PR), there are still significant differences in scores between palliative units in nursing homes and home care. When testing the effect of data collection methods in each setting, results for hospice inpatient care also showed significant differences in the ID dimension (P = 0.012), although this was not the case for palliative units in nursing homes (P = 0.180), which contradicts the influence of the data collection method. Based on this, we believe that the data collection method did not bias the results, although, until our findings are supported by more studies, the results should be interpreted with caution.In the present study, 54 had help filling out the questionnaire. Data collection methods may influence perceptions of care quality , 87 but When computing the QPP-PC factors and dimensions, a mean was calculated based on patients’ responses to all the items within the factor/dimension. As participants were recruited from different settings and had different diagnoses, a high proportion of “not applicable” responses for some items were expected. This was handled by calculating a mean based on the individual patient answers to the remaining items within the factor or dimension. To avoid a type 1 error the significance level was reduced to 0.025.t-test or Pearson’s χ2 test as appropriate. The two hospice inpatient wards did not differ significantly with regard to patient characteristics . However, hospice care delivered through community care did differ significantly from that of the palliative units in nursing homes with regard to patient characteristics . This justified grouping together the two inpatient hospice wards in the present study’s analysis.Grouping the participating services into settings of hospice inpatient care, hospice day care, palliative units in nursing homes, and home care, when they are organized in different ways, may be discussed. In particular, this may be a case for grouping the two hospice inpatient services. Both of these services used the term “hospice” to name and describe the services. However, they differed in their organization of care – one being delivered through community care and the other through specialist care services. Another way of grouping the setting variables could have been to group together inpatients wards delivered though community care. However, additional analyses were performed to check whether these two hospices differed significantly in the patient populations in terms of demographic data, and whether hospice care delivered through community care differed significantly from that of the palliative units in nursing homes, which was also delivered through community care. This was performed by comparing patient characteristics between the wards, using independent-samples P values. The homogeneity of variance, tested by Levine’s test, was significant for the dimensions MT, PT, and ID, and for the single items about medical care, hygiene, and atmosphere on the PR scale. For the SI scale this was also true for the SC dimension and for single items about hygiene and atmosphere. This was probably a result of the ceiling effect [P values, their level was, as mentioned above, reduced to 0.025, in addition to choosing and performing conservative post-hoc tests for the ANCOVA analysis, as recommended by Tabachnick and Fidell [P values was also beneficial when performing multiple analyses.By performing ANCOVA, it is possible to control for bias related to differences in the groups and their effects on the results, which is a strength of the present study. Before performing the ANCOVA tests, the data were tested to see whether they met the assumptions on which the tests are built  , 59. Theg effect . To avoiWe controlled for significant differences in patient characteristics across the four settings, but we could not control for diagnosis and time in care. Patients with diagnoses other than cancer could perceive the care quality as less favourable than patients with cancer , 25, 39,Areas of strengths and improvement within each setting could guide further development of palliative care in the specific settings, by sustaining the strengths and developing specific improvement initiatives. Patients’ perceptions of the importance of care did not differ across the settings, so care areas receiving high scores on the SI scale could also be considered important when developing or improving such services. Patients’ perceptions of care received registered higher scores especially in hospice inpatient care, but also for hospice day care and palliative units in nursing homes. Further studies are needed from the patient perspective to support the findings of the present study. For further guidance of the development of palliative care, it is important to investigate why patients’ perceptions of care differ across settings and to highlight what we need to learn from those settings that receive high scores.


Familial Nonmedullary Thyroid Carcinoma (FNMTC) makes up to 5–10% of all thyroid cancers, also including those FNMTC occurring as a minor component of familial cancer syndromes, such as Familial Adenomatous Polyposis (FAP). We give evidence that this extracolonic manifestation of FAP is determined by the same germline mutation of the APC gene responsible for colonic polyps and cancer but also shows some unusual features , suggesting that the APC gene confers only a generic susceptibility to thyroid cancer, but perhaps other factors, namely, modifier genes, sex-related factors, or environmental factors, are also required for its phenotypic expression. This great variability is against the possibility of classifying all FNMTC as a single entity, not only with a unique or prevalent causative genetic factor, but also with a unique or common biological behavior and a commonly dismal prognosis. A new paradigm is also suggested that could be useful (1) for a proper classification of FAP associated PTC within the larger group of FNMTC and (2) for making inferences to sporadic carcinogenesis, based on the lesson from FAP. Familial Nonmedullary Thyroid Carcinoma (FNMTC) is a nonmedullary thyroid cancer occurring in a subject with germline mutation for a gene responsible for an inherited multitumoral syndrome, including thyroid carcinoma as a part of the syndrome . FNMTC makes up to 5–10% of all thyroid cancers, also including those FNMTC occurring as a minor component of familial cancer syndromes, such as Gardner's syndrome, Cowden's disease, Carney complex type-1, Werner's syndrome, McCune Albright syndrome, or Familial Adenomatous Polyposis (FAP) . In partIn addition, it has been suggested that “the genetic inheritance of FNMTC, (in patients in whom it is the predominant feature), remains ‘unknown…'”, but “it has been observed an increased percentage of male patients with FNMTC compared to those with sporadic NMTC” .n = 18, all females) and were the first to show a significant genotype-phenotype correlation, suggesting that most of APC (Adenomatous Polyposis Coli) germline mutations in patients with FAP associated FNMTC are located in a well defined genomic area, that is, 5′ to codon 1200 [We have collected the largest world series of patients with FAP  associated FNMTC  –10.While many individuals are diagnosed with FAP due to the discovery of colonic polyps, the identification of CMV (cribriform-morular variant) histology in patients with PTC provides clinicians with a unique opportunity to diagnose occult cases of FAP –25.During the last decade we have continued (1) to recruit FAP associated FNMTC, (2) to follow up those previously collected, and (3) to collect all available data from the literature –17, 26.In our review of the various series (often including just 1 or 2 cases) we could document that whereas in our first report on FAP associated FNMTC, the prevalence for females was 17 : 1, after 2000, there was a striking increase  in sporadic tumors –17, 26.More than 80% of FAP associated FNPTC were diagnosed between 18 and 35 years of age. In particular, in our 18 patients, diagnosis was concomitant in 6 (1/3), whereas in 6 (1/3) FAP preceded and in 6 (1/3) PTC preceded. This is very important, because the early occurrence of PTC can facilitate diagnosis in some kindred with undetected FAP .In an overall series of 200 cases reported in the literature (112 before 2000 and 90 after that year), there were very few recurrences and only 1 death, possibly related to FAP associated PTC , 17, 26.Concerning the actual prevalence of PTC in FAP patients, it has been reported as 0.4% to 2% in various retrospective series. More recently, results of prospective registry screening programs for PTC in patients with FAP have reported prevalences of 2.6%  to 11.8%The main criticism that can be raised in the interpretation of the findings of the last series, in which all FAP patients underwent intensive screening, concerns the significance of observed data. In fact, in some cases thyroid nodules resulted positive at FNAB, even in males and after age 60. This observation contrasts with previous observations, suggesting that these tumors are likely to be different from those currently associated with FAP, occurring in females aged less than 35.In our first report the mean age of patients was 24.8 years, in a series of 15 female patients .Harach et al.  reportedCameselle-Teijeiro and Chan  describeHarach et al.  speculatOn the contrary, the most common genetic abnormality in papillary thyroid carcinoma BRAF mutation appears to be absent in FAP associated thyroid cancer, suggesting that BRAF and APC RET/PTC mutations are mutually exclusive of each other in the occurrence of different types of PTC , 17, 26.However, there are some clinical, demographic, and prognostic differences between sporadic CMV-PTCs, which may occur in males  and in old age, and many reports show an aggressive behavior with distant metastasis , 21, 29 Therefore, we suggest caution before stating that, despite similar features and the possibility of diagnosing CMV PTC preoperatively by FNAB, these tumors (sporadic and FAP associated) should be considered as a single entity , 17.Interestingly, whereas tumors in the colon rectum occur invariably in almost 100% of subjects with APC germline mutations, with no prevalence for any sex and with the same incidence in males and in females , FAP associated FNMTC occurs in a minority of affected siblings, in the absence of LOH for APC  and almoIn particular, this is a very unusual finding in an inherited multitumoral syndrome. There is no doubt that FAP associated FNMTC is part of the multitumoral syndrome due to germline mutations of a tumor suppressor gene as APC. In fact, there is a frequent association of FNMTC in siblings with the same germline mutation .There is a statistically significant association between FNMTC and the site of germline mutations  [However, the absence of complete inactivation of the gene  suggestsIt is likely that FAP associated FNMTC represents a veritable example of cooperation between purely inherited factors (APC germline mutation) and epigenetic or environmental factors, namely, those strictly connected with the female sex, as the striking female to male ratio of 80 : 1 strongly suggests .These peculiar features have been documented in detail only for FAP associated FNMTC, with the striking female preponderance.In FNMTC associated with Werner syndrome, a relative male prevalence has been suggested by some authors ; as wellWe suggest that a similar multifactorial cooperation could also occur for the most frequent variant of FNMTC that is not associated with a germline mutation of a known tumor suppressor gene. We suspect that the 5–10% of FNMTC do not include just a few rare manifestations of 3-4 inherited multitumoral syndromes (such as those quoted in a recent review) [Actually, Navas-Carrillo et al.  report  different from that suggested by Navas-Carrillo et al.  for the On the basis of these cumulative data, it is more likely that there is a galaxy, a wide multiplicity, of potential germline mutations, each of which can confer an increased susceptibility, but other genes or factors, namely, environmental factors , are also required for PTC manifestation.This great variability of germline predisposing factors and of epigenetic and environmental factors is against the possibility of classifying all FNMTC as a single entity, not only with a unique or prevalent causative genetic factor, but also with a unique or common biological behavior, such as “higher rates of metastases, extrathyroidal invasion, and shorter disease free survival.”The only common characteristic  is the frequent multicentricity. But, also in this respect, it must be outlined that we had no recurrence in the contralateral lobe , in 5 out of 5 subjects with FAP associated FNMTC, who had hemithyroidectomy, because they refused total thyroidectomy, in association with total colectomy and other concomitant invasive operations at a young age, which are usually required in FAP subjects , 17, 26.In particular, there is no single genetic alteration predisposing specifically to FNMTC in all cases. On the contrary, there are various syndromes, also including some familial cancer syndromes, that have multiple siblings with FNMTC as a part of the syndrome.Therefore, if FNMTC is a very heterogeneous syndrome, to try to select common features as well as a uniform prognosis or the same biological behavior can be misleading.Furthermore, the lesson from the galaxy of heterogeneous FNMTC, if correctly interpreted, could contribute to open new avenues for a deeper knowledge of pathogenic factors determining the occurrence of all “common” or most frequent types of cancers.From a more general point of view, concerning inherited predisposition of tumors, we hypothesize that, concerning genetic predisposition, in the vast majority of “common cancers” , there is an individual way to cancer occurrence; that is, there is a single gene or an oligogenic alteration, that is, one or more germline mutations occurring in some cancer facilitating or controlling genes, but also in genes controlling immune response or other functions, which predisposes to cancer. This cancer predisposition that is not due to a single germline mutation in a tumor suppressor gene , but due to a combination of genes, could segregate more frequently in siblings, facilitating the familial occurrence of some cancers .In particular, our recent studies on oligogenic germline mutations in nonsmoker-discordant siblings with lung adenocarcinoma (1) confirmed, as a “proof of concept,” the hypothesis of an oligogenic combination for cancer susceptibility, (2) further support a model of “private genetic epidemiology” for a better understanding of the genetic effects in families with common cancers, and (3) suggest the possibility that each individual may have his/her personal way to cancer. These findings could have important implications for personalized medicine . It is nConcerning FNMTC, the preliminary knowledge of the familial aggregation of a given cancer could be a useful tool for early tumor detection. But this should not be used to conclude that FNMTC should be considered as a single entity, a unique disease, with a common pathogenic mechanism.We must recognize that, on the basis of present data, we are unable to answer uniformly to the question as to whether FNMTC is more or less aggressive than its sporadic counterpart. The correct answer could be “in some cases yes, in others no.” It depends on inherited genetic alterations facilitating cancer susceptibility, but also on the individual tumor of a given subject.We suggest that time has come that, on the basis of current clinical evidence, we must challenge and also try to confute the “old scientific paradigm” and to provide a “new paradigm” that is more in accordance with actual genetic, pathologic, and clinical evidence. After the “genetic revolution” following DNA discovery and human genome sequencing, together with the observation that a single base change in a single gene (as a germline mutation) could be responsible for the occurrence of a given cancer in 100% of affected subjects (such as in FAP), the utopian dream has been cultivated that “targeted genetic engineering” could cure clinically evident cancer. Unfortunately, this is not the case. Analogously, clinical evidence and long-term follow-up (as in FAP associated FNMTC or in MEN 2A associated endocrine tumors) have shown that it is not true that a tumor belonging to an inherited multitumoral syndrome  has a more aggressive behavior and a worse prognosis than its sporadic counterpart.Not only many multitumoral syndromes (such as FAP), but also nontumoral diseases , instead of being determined by a single germline mutation in a single gene, may be determined not only by mutually exclusive mutations in different genes (APC and MYH) , but alsThe new paradigm can be the following. A single genetic mutation, but also, and perhaps more frequently, an oligogenic group of germline mutations  sometimes overlapping among individuals, but often differing from one individual to another, can be responsible for cancer (or common diseases) predisposition, together with a wide range of epigenetic or environmental factors , or necessary for its full phenotypic manifestation. In addition, biological behavior, aggressiveness of the tumor, and also susceptibility to tumor occurrence, do not depend only on the quantity or the “potential danger” of the “offending agent,” but also on the resistance of the subject, not only at the level of the targeted cell or tissue, but also as “host resistance” as an entire “indivisible” organism .The true challenge of the near future is that available data from the literature can be used and interpreted according to the “old paradigm,” considering FNMTC as a single entity, with a common biological behavior, or according to the “new paradigm” as “a galaxy of different diseases,” each one with its peculiar combination between congenital predisposing factors, also facilitating familial aggregation, and environmental factors, determining in every patient a “unique type of cancer.” This new paradigm fits more and is more in accordance with the so-called “personalized medicine” .


We read with interest the recent article “Alternate Sequential Suture Tightening: A Novel Technique for Uncontrolled Postpartum Hemorrhage” by Ghosh and Mala . They deFirst, we wonder if such a tight knot is needed. In the Ghosh technique, the final knot was eventually tightened compared to the initial knot by as much as 3–5 cm, meaning tighter by 3–5 cm compared with an ordinary Hayman suture . In our As described previously, generally speaking, compression force is related to the ability to induce hemostasis but is also related to adverse events associated with UCS . A tightSecond, since the Ghosh technique is a modified Hayman suture , a drawbObstetric practice has surely changed before and after the introduction of the UCS. We have now obtained a powerful tool, the UCS, against postpartum hemorrhage. Every effort should be made to make the UCS better and, thus, we applaud and respect Drs. Ghosh and Mala. The development of a number of UCS techniques shows that there may be no one best UCS. Further study of the UCS and wide discussion are needed.