Patient perspectives of the impact and long-term management of lymphoedema

Lymphoedema following cancer treatment is characterized by swelling, and adversely influences mobility, function and quality of life. There is no cure, but without treatment lymphedema may progress. Since lymphedema treatment options are costly and time consuming, understanding the influence of these, and other potential barriers, on treatment adherence is vital in reducing the public health burden of lymphedema. Complex physical therapy and compression are supported by scientific evidence and patients also perceive these treatments as effective for improving symptoms and function. Multiple treatments may be required to treat all aspects of the condition. Patients and health professionals should consider effect and costs when identifying optimal treatment strategies.

Patient perspectives of using a web based intervention program for patients with type 2 diabetes and acute coronary syndrome

Introduction Research highlights patients with dual diagnoses of type 2 diabetes and acute coronary syndrome (ACS) have higher readmission rates and poorer health outcomes than patients with singular chronic conditions. Despite this, there is a lack of education programs targeted for this dual diagnosis population to improve self-management and decrease negative health outcomes. There is evidence to suggest that internet based interventions may improve health outcomes for patients with singular chronic conditions, however there is a need to develop an evidence base for ACS patients with comorbid diabetes. There is a growing awareness of the importance of a participatory model in developing effective online interventions. That is, internet interventions are more effective if end users’ perceptions of the intervention are incorporated in their final development prior to testing in large scale trials. Objectives This study investigated patients’ perspectives of the web-based intervention designed to promote self-management of the dual conditions in order to refine the intervention prior to clinical trial evaluation. Methods An interpretive approach with thematic analysis was used to obtain deeper understanding regarding participants’ experience when using web-application interventions for patients with ACS and type 2 diabetes. Semi-structured interviews were undertaken on a purposive sample of 30 patients meeting strict inclusion and exclusion criteria to obtain their perspectives on the program. Results Preliminary results indicate patients with dual diagnoses express more complex needs than those with a singular condition. Participants express a positive experience with the proposed internet intervention and emerging themes include that the web page is seen as easy to use and comforting as a support, in that patients know they are not alone. Further results will be reported as they become available. Conclusion The results indicate potential for patient acceptability of the newly developed internet intervention for patients with ACS and comorbid diabetes. Incorporation of patient perspectives into the final development of the intervention is likely to maximise successful outcomes of any future trials that utilise this intervention. Future quantitative evaluation of the effectiveness of the intervention is being planned.

Self-management support for people with chronic kidney disease: Patient perspectives

Background Self-management of chronic kidney disease (CKD) is crucial for health outcomes and people need to be effectively supported by healthcare professionals (HCPs). Some programmes designed to improve self-management have been implemented, but people with the disease are rarely consulted regarding what they desire from these programmes. Objectives To provide a synthesis of the literature on preferences for self-management support of people with CKD. Design An integrative review. Methods Four databases (MedLine, CINAHL, PsycARTICLES and PsycINFO) were searched using relevant search terms. Results The search strategy identified 1,913 records, of which 12 studies met inclusion criteria. Ten themes were identified as important areas to be addressed by self-management interventions. In addition, patient suggestions for implementation of such interventions are discussed. Conclusion The principles of a person-centred approach ought to frame the support provided by HCPs when supporting those with CKD to better self-manage.

Patient perspectives of factors contributing to inadequate dietary intake in acute care patients in hospital

Up to 30% of acute care patients consume less than half of the food provided in hospital. Inadequate dietary intake can have adverse clinical outcomes, including a higher risk of in-hospital mortality. This study aimed to investigate the reasons for poor intake among acute care patients in hospital. Patients with an observed intake of ≤50% of the food provided at lunch were approached to participate in the study. Thirty-two patients participated in semi-structured interviews over a three week period, to provide their perspective of food and mealtimes in hospital and discuss the reasons and factors influencing inadequate intake. Responses were coded and analysed thematically using the framework method. Patients reported both individual and organisational factors contribute to their inadequate intake. Half the patients reported the size of the meals were too large, with some patients reporting that large meal sizes puts them off their food and reduced their intake. ‘Not important to eat all the food provided’, and ‘do not need to eat much food in hospital’ were common attitudes among the patients. Half the patients reported that nurses did not observe their intake and were not concerned if all the food was not eaten. Identifying the reasons for poor intake can assist with the development of suitable interventions to improve dietary intake and reduce the risk of adverse clinical outcomes. Further investigation of suitable interventions to reduce portion sizes and improve both staff and patient perceptions of the importance of food in hospital is recommended.

Staff and patient perspectives on unmet need and therapeutic alliance in community mental health services

Therapeutic alliance between clinicians and their patients is important in community mental healthcare. It is unclear whether providing effective interventions influences therapeutic alliance.

Managing chronic widespread pain in primary care : a qualitative study of patient perspectives and implications for treatment delivery

Funding The MUSICIAN trial was supported by an award from Arthritis Research UK, Chesterfield, UK. Grant number: 17292. The funding body approved the design of the study. They played no role in the collection, analysis, and interpretation of data or the writing of the manuscript.

Patient perspectives of a diagnosis of myeloproliferative neoplasm in a case control study

Background: Myeloproliferative neoplasms (MPNs) including the classic entities; polycythemia vera (PV), essential thrombocythemia (ET) and primary myelofibrosis are rare diseases with unknown aetiology. The MOSAICC study, is an exploratory case–control study in which information was collected through telephone questionnaires and medical records. Methods: As part of the study, 106 patients with MPN were asked about their perceived diagnosis and replies correlated with their haematologist’s diagnosis. For the first time, a patient perspective on their MPN diagnosis and classification was obtained. Logistic regression analyses were utilised to evaluate the role of variables in whether or not a patient reported their diagnosis during interview with co-adjustment for these variables. Chi square tests were used to investigate the association between MPN subtype and patient reported categorisation of MPN. Results: Overall, 77.4 % of patients reported a diagnosis of MPN. Of those, 39.6 % recognised MPN as a ‘blood condition’,23.6 % recognised MPN as a ‘cancer’ and 13.2 % acknowledged MPN as an ‘other medical condition’. There was minimal overlap between the categories. Patients with PV were more likely than those with ET to report their disease as a ‘blood condition’. ET patients were significantly more likely than PV patients not to report their condition at all.Patients from a single centre were more likely to report their diagnosis as MPN while age, educational status, and WHO re-classification had no effect. Conclusions: The discrepancy between concepts of MPN in patients could result from differing patient interest in their condition, varying information conveyed by treating hematologists, concealment due to denial or financial concerns. Explanations for the differences in patient perception of the nature of their disease, requires further, larger scale investigation.

Long-term antidepressant use: patient perspectives of benefits and adverse effects

Long-term antidepressant treatment has increased and there is evidence of adverse effects; however, little is known about patients’ experiences and views of this form of treatment.This study used mixed methods to examine patients’ views and experiences of long-term antidepressant treatment, including benefits and concerns. Data from 180 patients, who were long-term users of antidepressants (3–15 years), were extracted from an anonymous online survey of patients’ experiences of antidepressants in New Zealand. Participants had completed rating scales about the effectiveness of antidepressants, levels of depression before and during antidepressant use, quality of life, and perceived adverse effects. Two open-ended questions allowed participants to comment on personal experiences. The majority (89.4%) reported that antidepressants had improved their depression although 30% reported moderate-to-severe depression on antidepressants. Common adverse effects included withdrawal effects (73.5%), sexual problems (71.8%), and weight gain (65.3%). Adverse emotional effects, such as feeling emotionally numb (64.5%) and addicted (43%), were also common. While the majority of patients were pleased with the benefits of antidepressant treatment, many were concerned about these adverse effects. Some expressed a need for more information about long-term risks and increased information and support to discontinue.

Approaches to reducing the most important patient errors in primary health care : patient and professional perspectives

We have previously reported a preliminary taxonomy of patient error. However, approaches to managing patients' contribution to error have received little attention in the literature. This paper aims to assess how patients and primary care professionals perceive the relative importance of different patient errors as a threat to patient safety. It also attempts to suggest what these groups believe may be done to reduce the errors, and how. It addresses these aims through original research that extends the nominal group analysis used to generate the error taxonomy. Interviews were conducted with 11 purposively selected groups of patients and primary care professionals in Auckland, New Zealand, during late 2007. The total number of participants was 83, including 64 patients. Each group ranked the importance of possible patient errors identified through the nominal group exercise. Approaches to managing the most important errors were then discussed. There was considerable variation among the groups in the importance rankings of the errors. Our general inductive analysis of participants' suggestions revealed the content of four inter-related actions to manage patient error: Grow relationships; Enable patients and professionals to recognise and manage patient error; be Responsive to their shared capacity for change; and Motivate them to act together for patient safety. Cultivation of this GERM of safe care was suggested to benefit from 'individualised community care'. In this approach, primary care professionals individualise, in community spaces, population health messages about patient safety events. This approach may help to reduce patient error and the tension between personal and population health-care.

'Talk to me': a mixed methods study on preferred physician behaviours during end-of-life communication from the patient perspective

Background
Despite the recognized importance of end-of-life (EOL) communication between patients and physicians, the extent and quality of such communication is lacking.

Objective
We sought to understand patient perspectives on physician behaviours during EOL communication.

Design
In this mixed methods study, we conducted quantitative and qualitative strands and then merged data sets during a mixed methods analysis phase. In the quantitative strand, we used the quality of communication tool (QOC) to measure physician behaviours that predict global rating of satisfaction in EOL communication skills, while in the qualitative strand we conducted semi-structured interviews. During the mixed methods analysis, we compared and contrasted qualitative and quantitative data.

Setting and Participants
Seriously ill inpatients at three tertiary care hospitals in Canada.

Results
We found convergence between qualitative and quantitative strands: patients desire candid information from their physician and a sense of familiarity. The quantitative results (n = 132) suggest a paucity of certain EOL communication behaviours in this seriously ill population with a limited prognosis. The qualitative findings (n = 16) suggest that at times, physicians did not engage in EOL communication despite patient readiness, while sometimes this may represent an appropriate deferral after assessment of a patient's lack of readiness.

Conclusions
Avoidance of certain EOL topics may not always be a failure if it is a result of an assessment of lack of patient readiness. This has implications for future tool development: a measure could be built in to assess whether physician behaviours align with patient readiness.

Letters in cognitive analytic therapy: The patient's experience

Patient perspectives on how therapeutic letters contributed to their experience of cognitive analytic therapy (CAT) were investigated. Eight patients took part in semistructured interviews. A grounded, thematic analysis of their accounts suggested four general processes. First, letters offered a tangible, lasting framework for the assimilation of a new perspective about themselves and their relationships and facilitated coping with a complex range of emotions and risks this awareness required. Second, they demonstrated therapists’ commitment to patients’ growth. Third, they helped to teach participants about the therapy process as an example of an interpersonal exchange. Fourth, they helped participants consider how they wished to share personal information. These data offer a more complex understanding of this standard CAT intervention. Although some findings are consistent with CAT theory, the range of emotional dilemmas associated with letters has not received specific attention. Clinical implications are discussed.

Patient-reported outcomes in borderline personality disorder.

Patient-reported outcome (PRO) refers to measures that emphasize the subjective view of patients about their health-related conditions and behaviors. Typically, PROs include self-report questionnaires and clinical interviews. Defining PROs for borderline personality disorder (BPD) is particularly challenging given the disorder's high symptomatic heterogeneity, high comorbidity with other psychiatric conditions, highly fluctuating symptoms, weak correlations between symptoms and functional outcomes, and lack of valid and reliable experimental measures to complement self-report data. Here, we provide an overview of currently used BPD outcome measures and discuss them from clinical, psychometric, experimental, and patient perspectives. In addition, we review the most promising leads to improve BPD PROs, including the DSM-5 Section III, the Recovery Approach, Ecological Momentary Assessments, and novel experimental measures of social functioning that are associated with functional and social outcomes.

Global practice experience: A useful lens for understanding patient and staff perceptions of successful integration of health information technology in primary care

Making healthcare comprehensive and more efficient remains a complex challenge. Health Information Technology (HIT) is recognized as an important component of this transformation but few studies describe HIT adoption and it's effect on the bedside experience by physicians, staff and patients. This study applied descriptive statistics and correlation analysis to data from the Patient-Centered Medical Home National Demonstration Project (NDP) of the American Academy of Family Physicians. Thirty-six clinics were followed for 26 months by clinician/staff questionnaires and patient surveys. This study characterizes those clinics as well as staff and patient perspectives on HIT usefulness, the doctor-patient relationship, electronic medical record (EMR) implementation, and computer connections in the practice throughout the study. The Global Practice Experience factor, a composite score related to key components of primary care, was then correlated to clinician and patient perspectives. This study found wide adoption of HIT among NDP practices. Patient perspectives on HIT helpfulness on the doctor-patient showed a suggestive trend that approached statistical significance (p = 0.172). Clinicians and staff noted successful integration of EMR into clinic workflow and their perception of helpfulness to the doctor-patient relationship show a suggestive increase also approaching statistical significance (p=0.06). GPE was correlated with clinician/staff assessment of a helpful doctor-patient relationship midway through the study (R 0.460, p = 0.021) with the remaining time points nearing statistical significance. GPE was also correlated to both patient perspectives of EMR helpfulness in the doctor-patient relationship (R 0.601, p = 0.001) and computer connections (R 0.618, p = 0.0001) at the start of the study. ^