Views Of Patients Research Articles

Sex sparing surgery in urological oncology

Major pelvic urological surgery (radical prostatectomy and radical cystectomy) and genital oncological surgery in the male patient can cause postsurgical sexual dysfunction. It is becoming increasingly important in the patient's view as a result of improved cancer prognosis, refinements in surgical technique, and increased awareness of quality of life aspects that involve sexual satisfaction. Besides the aesthetic aspects related to penis amputation in glans or penis tumor, the pathophysiology of the problem is essentially related to the disruption of the nerves during the procedure, both cavernous nerves during radical prostatectomy or cistectomy and simpathetic chains during retroperitoneal lymph nodes dissection. Moreover, a vascular impairment may also be advocated. Nerve-sparing surgery enables the recovery and/or maintenance of sexual functioning in a significant proportion of patients. In case of glans or penile tumor, a sexsparing surgery could preserve both erectile function and the aestethic, but when a complete amputation is necessary, a phalloplasty with penile prosthesis implantation coul restore the possibility of sexual intercourses. A number of erectile aids are available to treat postsurgical male erectile dysfunction successfully. Sexual riabilitation can be achieved in these patients with the first-line medical therapy (as oral PDE-5 inhibitor or intracavernous injecton) surgical approach, by implantation of penile prosthesis.

The development of personal models of diabetes in the first 2 years after diagnosis: a prospective longitudinal study

Personal models of diabetes comprise beliefs about symptoms, treatment effectiveness, consequences and emotional responses to possible future complications. They are associated with, and influence, self-care behaviour. Little work has examined potential influences on the development and maintenance of personal models. The aims of this study were: (i) to assess changes in personal models over 2 years from diagnosis of diabetes; and (ii) to examine the relative contributions of health threat communication (at diagnosis, since diagnosis, during follow-up care) and personality to personal models of diabetes 2 years post-diagnosis. Newly diagnosed patients were interviewed at diagnosis (< 3 months; time 1) and 6 months (time 2), 1 year (time 3) and 2 years (time 4) after diagnosis. Data were available for 158 patients at time 1 (32 Type 1 patients and 126 Type 2 patients), 147 at time 2, 142 at time 3 and 138 at time 4. Perceptions of symptoms, consequences, course and control of diabetes remained stable over time. Emotional responses decreased and illness coherence (perceived understanding) increased over time. Health threat communication was a stronger predictor of personal models than personality. Emotional responses to diabetes 2 years after diagnosis were predicted by perceptions of a threatening health message (at diagnosis 18%, at follow-up 5%). Health threat communication predicted perceptions of serious consequences (at diagnosis 5%, at follow-up 9%). Perceptions of a reassuring message during follow-up were related to beliefs of treatment effectiveness (26%). The communication of information and the way it is perceived is an important determinant of the patient's view of their diabetes. The initial effects of the education process at diagnosis persisted 2 years after diagnosis.

Distinguishing Nursing Art: Patient, Researcher, and Student Views: Nursing Is an Art

In this response to research, the author likens the art of nursing to a work of art: abstract with blurred lines but lots of opportunity for interpretation. Frances, a patient interviewed by Dr. Kathryn Gramling as part of her research into patients' perception of nursing care, along with her family, felt comforted by her nurse, who devoted some of his own time to ensuring that Frances understood the procedure she needed and spent time meeting her need for human contact. The author experienced something similar during a hospital stay: She too had a nurse who spent time and gave comfort. The result is that the author understands the art of nursing as it relates to an extra effort to be human and demonstrate empathy. The poem written by Dr. Gramling in response to Frances confirms the patient's view of the art of nursing.

The Patient’s View: Issues of Theory and Practice

Almost all the knowledge now produced about psychiatry includes what is called "the patient's or client's perspective." This paper analyzes how this notion has been framed in the discourses on mental health over the last two decades, particularly in mental health research and in anthropology. The very concept of the "patient's perspective" is a social and historical construct. Despite its remarkable prevalence, the notion remains vague. Mental health research pictures it as a stable attribute of the individual. Anthropologists integrate the contextual nature of the patient view; but they still largely envision the psychiatric patient as a rational actor producing narratives based on common sense. However, in psychiatric practice, the client's perspective is not something the patient individually produces; it is rather shaped by and in a context. To explore this process, my research investigated interactions between staff and patients in a French community mental health center, and showed that the client's perspective is the result of a collective process. Further analysis demonstrates that eliciting or producing the patient's view is sometimes considered a therapeutic goal in itself, since being granted the status of a rational and narrative actor gives access to the most valued model of care, one that is based on partnership. Being an outcome that is negotiated between patients and care providers, the "patient's view" then becomes a new resource in mental health settings.

The Influence of Proxy Perspective on Patient-Proxy Agreement in the Evaluation of Health-Related Quality of Life

There are situations in which patient self-reported health-related quality of life must be substituted by proxy assessments. Pickard and Knight recently delineated 2 proxy perspectives that may influence the nature of proxy measurements: the "proxy-patient" (the proxy's assessment from the patient's perspective) and the "proxy-proxy" perspective (the proxy's own assessment of the patient). They argued that the "proxy-patient" perspective would be " optimally consistent with the patient's view." The purpose of this study was to evaluate these to proxy perspectives in terms of patient-proxy bias and agreement. The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-C30 was administered to 224 cancer patients and their proxies (ie, significant others), who were randomly assigned to 1 of the 2 proxy conditions. Differences in patient-proxy bias and agreement were evaluated using t tests, percentage agreement, and intraclass and Pearson correlation coefficients. Small yet significant amounts of patient-proxy bias were found in both conditions, with patients reporting higher levels of functioning and lower symptoms levels than proxies. However, no significant differences in bias were observed between the conditions. Significantly better agreement on the role and cognitive functioning scales was found in the "proxy-proxy" condition, and for the diarrhea scale in the "proxy-patient" condition. There is some indication that several of the European Organization for Research and Treatment of Cancer functional scales may perform better when using the "proxy-proxy" perspective. However, no compelling evidence was found for clear superiority of either proxy perspective. These results deserve further study, as they are not entirely consistent with the pattern of agreement implied by Pickard and Knight.

Asking the right questions in the right way: the need for a shift in research on psychological treatments for addiction

To identify possible reasons for the disappointingly negative results of methodologically rigorous controlled trials of psychological treatments in the addictions field. A selective overview of the literature on addictive behaviour change. Eight failings of existing research are described: failing to account for the outcome equivalence paradox; neglecting relationships in favour of techniques; failing to integrate treatment research and research on unaided change; imposing an inappropriate time-scale on the change process; failing to take a systems or social network view; ignoring therapists' tacit theories; not including the patient's view; and displaying an ignorance of modern developments in the philosophy of science. Treatment research has been asking the wrong questions in the wrong way. Three necessary shifts in ways of conducting research are proposed: (i) the field should stop studying named techniques and focus instead on change processes; (ii) change processes should be studied within the broader, longer-acting systems of which treatment is part; and (iii) science in the field should be brought up to date by acknowledging a variety of sources of useful knowledge.

EntonoxTM as a sedative for bone marrow aspiration and biopsy

Bone marrow aspiration and biopsy can be a painful procedure. Sedation techniques may make this investigation more acceptable to patients, but have the potential to cause life-threatening complications, as well as requiring additional staff and equipment for safe administration. We assessed the use of Entonox, a 50 : 50 mix of nitrous oxide and oxygen, as a sedation and analgesic agent, and compared it to previous experience with the intravenous (i.v.) benzodiazepine midazolam. Patients' perception of pain, and both the operator and patient's views on the ease of the procedure and safety factors were recorded. Twenty-two patients who had previously required i.v. midazolam sedation (16), or who requested sedation (6) were studied. Fifteen of 16 (94%) found Entonox better or equal to midazolam, and only one patient (6%) found it worse. There were no serious adverse events due to Entonox. We have shown, in this small group of patients, that Entonox is an effective, safe alternative to intravenous midazolam for sedation during bone marrow biopsy, and is considered acceptable by both patients and staff. It has the major advantage that no additional staff or facilities are required for safe administration or monitoring the patient during or after the procedure.

Patient's and therapist's views of early alliance building in dynamic psychotherapy: Patterns and relation to outcome.

Patients and therapists have somewhat divergent perspectives of alliance. Usually in psychotherapy research, the focus is on the patient's view of alliance, predicting parts of outcome. This study questions this hypothesis by applying the shape-of-change procedure to patient's and therapist's view of alliance-building processes in dynamic psychotherapy. The results of this naturalistic study indicate that none of the 3 patient patterns is related to outcome at the end of psychotherapy, but a specific therapist's pattern--out of 2--is linked to positive symptom change. These results are discussed in the context of present research on therapeutic alliance, especially in terms of level and process, its measurement, and potential in predicting outcome in dynamic psychotherapy. (PsycINFO Database Record (c) 2008 APA, all rights reserved)

The patient's view of recovery: An emerging tool for empowerment through self-knowledge

Purpose. To introduce Recovery Preference Exploration (RPE) as a new technique for studying the personal significance of being able to perform one type of functional activity over others. To determine if patients' concepts of function reflect the ADL, sphincter management, mobility and cognition (ASMC) domains established through the factor analyses of observed patient performance.Methods. RPE involves an adapted card sort procedure. Patients sorted 18 cards each listing a single functional skill such as eating, walking, and memory into subjectively meaningful groups of activities based on how they see those skills relating to one another in their daily lives. They then ordered the groups from most to least important. Recovery preferences were explored for 32 patients with disabilities resulting from neurological or other conditions undergoing inpatient rehabilitation in the USA.Results. The abilities to eat, bathe and toilet were the activities most frequently placed in the most valued pile. At times, the patient's card sorts mirrored the ASMC domains. At other times, patients grouped activities that tended to occur in a particular place or that were linked through cause and effect. Patients' narrative explanations reflected the uniqueness of their personal circumstances.Conclusions. RPE uncovers the life contexts that underlie patients' subjective beliefs about the meaning of being able to perform various types of activities. RPE might be applied in clinical practice and research to explore the idiosyncratic aspects of disability.

Patient satisfaction with different asthma-training variants

Objective Information on patient satisfaction with professional health care delivery in asthmatics is rare, and the question as to how asthma education programmes affect such satisfaction has not yet been addressed. Methods This multi-centre study investigated three different variants of an asthma education programme for adults. Patients participated either in variant B (basic training with teacher-directed presentation, two 90 min sessions), variant C (comprehensive training, four sessions), variant D (including additional psychological components, minimum five sessions), or variant E (equivalent to B in outpatient context). At the end of the training the perceived satisfaction with the programme and reported personal benefit were assessed by means of a new inventory that was developed. Results The sample comprised N = 320 patients ( n = 244 inpatients and n = 76 outpatients) ranging in age from 18 to 80 years ( M = 46.3 years). The average total score for educational satisfaction of all participants was 8.0 (maximum score = 10). Choice of topics was judged particularly positive ( M = 8.58), followed by the structure of training/setting-conditions ( M = 8.0). The perceived personal benefit from the training was evaluated less positively ( M = 7.32). When comparing the programme variants, patients’ average satisfaction tends to increase with the extent and intensity of the training offered. Outpatients showed significantly less satisfaction in contrast to inpatients. Inpatients’ satisfaction with the three variants increased with extensiveness and intensity of the training, while the contrast of between-group comparisons (B–C, B–D and C–D) was significant. Conclusion Assessment of the patient's view of health care services should complement standardised evaluation methods, especially in multi-intervention rehabilitation programmes. Practice implications Rehabilitation-specific diagnostic measures should be developed and validated in order to better assess patients’ satisfaction and training efficacy from the patient's perspective. Further study is recommended on how far individualised training measures might increase subjective benefit.

Projective Identification as an Inescapable Aspect of the Therapeutic Relationship

Based on the theoretical assumption and clinical observation that projective identification is a natural, constant element in human psychology, clinical material is used to illustrate how projective identification centered transference states create situations where acting out of the patient's phantasies and conflicts by both patient and therapist is both common and unavoidable. Because they are more obvious, some forms of projective identification encountered in clinical practice are easier for the analyst to notice and interpret. Other forms are more subtle and therefore difficult to figure out. Finally, some forms, whether subtle or obvious, seem to create a stronger pull on the analyst to blindly act out. In some psychoanalytic treatments, one form of projective identification might embody the core transference. In other cases, the patient might shift or evolve from one level of this mechanism to another. Some patients attempt to permanently discharge their projective anxiety, phantasy, or conflict into the analyst. There is a patent resistance to re-own, examine, or recognize this projection. Some of these patients are narcissistic in functioning, others are borderline, and many attempt to find refuge behind a psychic barricade or retreat (Steiner 1993). In other forms of projective identification, the patient enlists the analyst to master their internal struggles for them. This occurs through the combination of interpersonal and intra-psychic object relational dynamics. This “do my dirty work for me” approach within the transference can evoke various degrees of counter-transference enactments and transference/counter-transference acting out. Another form of projective identification, common in the clinical setting, is when a patient wants to expand the way of relating internally, but is convinced the analyst needs to validate or coach the patient along. This is why such a patient may stimulate transference/counter-transference tests and conduct practice runs of new object relational phantasies within the therapeutic relationship. Over and over, the patient may gently engage the analyst in a test, to see if it is ok to change their core view of reality. Depending on how the analyst reacts or interprets, the patient may feel encouraged to or discouraged from continuing the new method of relating to self and object. The patient's view of the analyst's reactions is, of course, distorted by transference phantasies, so the analyst must be careful to investigate the patient's reasoning and feelings about the so-called encouragement or discouragement. This does not negate the possible counter-transference by the analyst in which he or she may indeed be seduced into becoming a discouraging or encouraging parental figure who actually voices suggestions and judgment. All these forms of projective identification surface with patients across the diagnostic spectrum, from higher functioning depressive persons to those who are more disturbed paranoid-schizoid cases. Whether immediately obvious or more submerged in the therapeutic relationship, projective identification almost always leads to some degree of acting out on the part of the analyst. Therefore, it is critical to monitor or use the analyst's counter-transference as a map towards understanding the patient's phantasies and conflicts that push them to engage in a particular form of projective identification.

The Patient's View Meets the Clinical Gaze

SummaryRoy Porter's 1985 article on ‘The Patient's View’ is the starting point for a methodological and historical reflection on the patient in medical history. This article gains its inspiration from the fact that to the present day, the history of patients as an intellectual project has not found much reflection. Old categories, such as patient, knowledge and disease, all need to be revisited and rethought. It sketches out several arenas where this debate will have to take place and contrasts Porter's patient's view with David Armstrong's writings on the constructed patient. It goes on to discuss the project of social history of medicine to begin to place Porter in the context of the discipline and closes with some comments on the political context of patients' history in the 1980s which coincided with the start of governmental reforms in the NHS intended to strengthen the patient's role.

Outcome related to impact on daily living: preliminary validation of the ORIDL instrument

BackgroundThe challenge of finding practical, patient-rated outcome measures is a key issue in the evaluation of health care systems and interventions. The ORIDL (Outcome in Relation to Impact on Daily Living) instrument (formerly referred to as the Glasgow Homoeopathic Hospital Outcomes Scale or GHHOS) has been developed to measure patient's views of the outcome of their care by asking about change, and relating this to impact on daily life. The aim of the present paper is to describe the background and potential uses of the ORIDL, and to report on its preliminary validation in a series of three studies in secondary and primary care.MethodsIn the first study, 105 patients attending the Glasgow Homoeopathic Hospital (GHH) were followed-up at 12 months and changes in health status were measured by the EuroQol (EQOL) and the ORIDL. In the second study, 187 new patients at the GHH were followed-up at 3, 12, and 33 months, using the ORIDL, the Short Form 12 (SF-12), and the Measure Yourself Medical Outcome Profile (MYMOP). In study three, 323 patients in primary care were followed for 1 month post-consultation using the ORIDL and MYMOP. In all 3 studies the Patient Enablement Instrument (PEI) was also used as an outcome measure.ResultsStudy 1 showed substantial improvements in main complaint and well-being over 12 months using the ORIDL, with two-thirds of patients reporting improvements in daily living. These improvements were not significantly correlated with changes in serial measures of the EQOL between baseline and 12 months, but were correlated with the EQOL transitions measure. Study 2 showed step-wise improvements in ORIDL scores between 3 and 33 months, which were only weakly associated with similar changes in SF-12 scores. However, MYMOP change scores correlated well with ORIDL scores at all time points. Study 3 showed similar high correlations between ORIDL scores and MYMOP scores. In all 3 studies, ORIDL scores were also significantly correlated with PEI-outcome scores.ConclusionThere is significant agreement between patient outcomes assessed by the ORIDL and the EQOL transition scale, the MYMOP, and the PEI-outcome instrument, suggesting that the ORIDL may be a valid and sensitive tool for measuring change in relation to impact on life.

Obtaining the Patient's Views on Care: Methodological and Practical Challenges in Long‐term Neurological Conditions

Obtaining the Patient's Views on Care: Methodological and Practical Challenges in Long‐term Neurological Conditions

A Questionnaire Study of Patients' Experience of Electroconvulsive Therapy

To ascertain patients' experience of electroconvulsive therapy (ECT) using a questionnaire having these features: short so to be acceptable to the elderly and the depressed; ascertaining experience, not opinions; coming from a 'neutral' source; and analyzed by methods that do not impose an arbitrary scale on ordinal response categories. Two hundred eighty-eight traceable patients consecutively treated with ECT were surveyed, the majority by post. One hundred forty-eight replied. The conviction, a median of 4 years after ECT, that side effects persisted was related to current depression and, inversely, to age, but not to the number of ECT given. Current depression was also associated with a less favorable account of emotional support during ECT. Formal legal status had no effect on any of the answers, but refusal of, or agreement to ECT on sufferance, was linked to a relatively unfavorable view of it. Not all patients regarded the decision to give them ECT compulsorily wrong on principle; some judged by results. The degree of current depression contributes to several aspects of the patient's view of ECT given a median of 4 years earlier. The belief that side effects persist has a complex basis; but the importance of this belief is not thereby diminished. Legal compulsion of treatment adds its own quota of contention which can be mitigated, but not entirely dispelled, by careful adherence to the law.

Experiences of breathlessness: A systematic review of the qualitative literature

Breathlessness is one of the core symptoms in many advanced conditions. The subjective nature of the symptom has been acknowledged in many definitions, emphasizing that it can only be fully perceived and interpreted by the patients themselves. To review and assess the evidence on the psychosocial nature or experience of breathlessness. Relevant literature was identified through electronic and hand searches. Studies with qualitative enquiry or mixed method designs were included. The methodological quality of studies was assessed with a standard grading scale. Twenty-two studies were identified, 12 from the United Kingdom, 4 from the United States, 3 from Canada, 1 from Sweden, 1 from Iceland, and 1 from Finland. The nature of the studies determined the themes in which the studies were subsumed. Studies on COPD (19) outnumbered "all other conditions" (3), one of which had COPD and cancer patients and so these were analyzed separately. Within the COPD category most studies (17) considered the experience of breathlessness from the perspective of the patient, 1 study from the informal carer, and 1 from the professional carer. Most of the papers sought to understand the meaning of the symptom in the patient's daily life. The other papers demarcated separate areas of the experience of acute exacerbations and the patient's view on care. The studies explored the subjective component of breathlessness, as part of human experience and social life. The papers showed the influence of the meaning the symptom has for those affected on their ability to cope and on their management. Although the work in this area is still dominated by research on COPD, the totality of the evidence now shows breathlessness as an intractable symptom in other advanced conditions. Practice recommendations focused on the holistic approach as part of palliative and nursing care.

Using an interactive module to enhance and understand 3D cavity navigation: a patient's view

We examined the views of patients and health specialists about the value of simulations of endoscopic procedures. The simulators used were the Interactive Module for Cavity Navigation (IMCA) and the Web Environment for Surgical Skills Training in Otolaryngology (WESST-OT). Fourteen patients were given an explanation about the simulations and then completed a questionnaire. The majority of patients (86%) stated that they would feel confident after an explanation with the simulation environment and most of them (93%) said that they would like to have post-procedural information available via the Web. The majority of the specialists stated that they would use the simulation environment for patient education and most of them said that they would publish post-procedural information on the Web. The present study provides preliminary evidence that the IMCA and the WESST-OT simulation environments can be used to enhance the experience of patients both pre- and post-procedure.

"I feel good-I feel alive." The Patient's View of Electroshock

The Journal of ECT: June 2007 - Volume 23 - Issue 2 - p 131-133 doi: 10.1097/YCT.0b013e318033c2ba

Shared decision-making in the Netherlands – current state and future perspectives

Dutch government policy is aimed at introducing regulated competition among health care providers and among health care insurers and at empowering patients for being involved in decision-making in health care. Along with this, many Dutch organisations have been created to foster patient orientation within health care and increase patients’ power for medical decision-making. The challenge is to deliver reliable and well-balanced information for patients and the public, eg. in patient-tailored web-based formats. The approach of patient participation in medical decision-making has been formally defined in a specific law (WGBO), and the principle of recognising the patient's view is increasingly reflected in the national guidelines for health care professionals. The theme of patient participation in medical decision making is a fairly widespread research topic theme in the Netherlands, including mutual exchange among the researchers in a vivid network. The real bottleneck is perhaps the implementation of patient participation into professional practice. Some recommendations for facilitating a change are made.

Early patient contact in undergraduate dental education in Germany –‘The Greifswald Model’

Revised regulations in Germany have allowed new curricular concepts to be introduced into the undergraduate dental curriculum. In the first 2 years of the dental curriculum at the University of Greifswald, a new teaching concept which is based on the interactions between Community Medicine and Dentistry has been introduced. It emphasises the importance of early patient contact in providing experience for students. The course consists of three principal elements: student-patient contacts in the patient's home; problem-based learning tutorials to discuss patient cases; and special training in communication skills. The aim of the course is to give students an insight into the patient's view of the illness and treatment, and the effect of their condition on his or her lifestyle. The students also learn about the communal perspective (health survey, intervention planning and implementation in a community). The first four courses were evaluated by questionnaires from the students before and after the 2-year course to assess the concept from the students' perspective. The results indicate that it is possible to provide considerable improvement of the medical/dental education as regards communication skills and understanding of the patients' perceptions, by letting the student establish contact with patients at the very beginning of the curriculum.