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National Clinical Guideline Centre (UK). Patient Experience in Adult NHS Services: Improving the Experience of Care for People Using Adult NHS Services: Patient Experience in Generic Terms. London: Royal College of Physicians (UK); 2012 Feb. (NICE Clinical Guidelines, No. 138.)

Cover of Patient Experience in Adult NHS Services: Improving the Experience of Care for People Using Adult NHS Services

Patient Experience in Adult NHS Services: Improving the Experience of Care for People Using Adult NHS Services: Patient Experience in Generic Terms.

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Appendix BThematic qualitative review: scoping report

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January 2011

B.1. Executive Summary

Patient experiences have become an important part of health care evaluation, contributing insights into the acceptability, relevance, appropriateness and effectiveness of health care. This scoping study has reviewed patient experiences in three clinical area, cancer, cardiovascular disease and diabetes, all areas of significant disease burden. We have extracted patient experiences data from a range of peer-reviewed studies and analysed them thematically, building on the sub-themes identified in the studies to develop generic patient experiences themes. Based on this analysis, we have developed a Generic Patient Experiences Framework that has potential relevance for all patients, but would need to be more widely tested. The Generic Patient Experiences Framework represents a synthesis of a wide and complex evidence base, building on the IoM framework, with some adaptation, and the addition of important themes that have emerged in this scoping study. The generic themes include patients as potential active participants, responsiveness of service – an individual approach, lived experience, continuity of care and relationships, communication, information and support. A set of evidence tables are included, providing a clear audit trail from the Framework to the underpinning evidence base. The Generic Patient Experiences Framework has the potential to contribute to the development of the Patient Experiences Guidance and the Quality Standard.

B.2. Introduction

The RCN Research Institute at the University of Warwick was commissioned by the Royal College of Physicians to undertake a scoping study of patient experiences literature, with the aim of identifying generic dimensions of experience that have relevance for all patients. This study, reported here, aims to inform the work of the Patient Experiences Guidance Group and the Quality Standard against which NHS care will be commissioned and evaluated.

B.2.1. Background

Patient experiences have become an important part of health care evaluation, contributing insights into the acceptability, relevance, appropriateness and effectiveness of health care, alongside clinical and economic forms of evidence (Staniszewska 2010). There is a large and diverse body of literature which documents the experiences of a range of patients in a variety of clinical areas, reflected in the large number of studies identified by searches of literature undertaken for this study (appendix 4). Research focusing on the effectiveness of interventions that aim to improve patients’ experiences has not been assessed for effectiveness in this review as this would have required a systematic review. In addition to published peer-reviewed studies of experience, valuable online sources of information and databases of patient experiences exist which aim to enhance our understanding of what it is like to live with a particular condition, for example Healthtalkonline (http://www.healthtalkonline.org/) which includes interviews with individuals about a range of conditions and PRIME, which focused on ME/CFS (http://www.prime-cfs.org/).

In an attempt to draw together and summarise our understanding of experiences, a number of frameworks have emerged that try to capture the key dimensions of patient experiences, for example the Institute of Medicine (2001). By dimensions we mean a theme or an area of experience, such as information or communication. However, it is not always clear how these dimensions of experiences have been abstracted from a wider and diverse body of research, or the extent to which patients and the public have been involved in developing or selecting these dimensions, or the extent to which the dimensions reflect patient-identified experiences, as opposed to those identified by researchers and clinicians. With these uncertainties about the underpinning of some of the existing frameworks, this scoping study aimed to identify a framework which captures generic dimensions of experiences and provides a very clear audit trail to the underpinning evidence in three clinical areas.

B.3. Aims

The overall objective of this scoping study was to:

  • To identify generic themes and sub-themes of patient experience in three clinical areas: cardiovascular disease, diabetes and cancer, all areas of significant disease burden.
  • To use the themes and sub-themes identified in the three clinical areas to develop an overall generic patient experiences framework that has potential relevance for all patients.

B.4. Methods

The aim of this scoping study was to sample from a range of patient experiences studies, with the intention of reaching a level of data saturation, in terms of the generic themes being identified for each group. Data saturation describes the point at which no new generic themes are being identified from studies (Ritchie and Lewis 2003). It is not an absolute measurement but a judgement made by the researcher. The intention was not to conduct a systematic review, which would have been unfeasible in the time-scale, but some elements of systematic reviewing were adopted, for example in the development of search strategies and in the extraction of data from papers (Centre for Reviews and Dissemination Guidance 2009).

B.4.1. Search strategy

The search strategies were developed and refined by an information specialist for each of the following key electronic databases: Medline, Cinahl, Assia, Embase and Psychinfo. Additional papers were identified from reference lists and specialist journals. Additional searches were carried out on PubMed and UK PubMed Central.

B.4.1.1. Inclusion criteria

Research papers that focus on exploring or identifying patient experiences in the three clinical areas: cardiovascular disease, diabetes and cancer. English language papers. Search dates: 1995 – 2011.

B.4.1.2. Exclusion criteria

Papers that primarily focus on interventions to enhance patient experiences. Papers that report development, testing or application of patient-reported outcome measures. Opinion articles or editorials about patient experience. Non-English language papers. Children’s experiences. Carer’s experiences. Grey literature.

B.4.1.3. Challenges in developing search strategies

In undertaking this study a number of challenges were identified with the development of search strategies. A key difficulty was the lack of MESH headings that relate to patient experiences, necessitating the use of free text searching, which can rely on poorly defined terminology sometimes inconsistently used across studies. The necessary use of many potentially relevant keywords initially produced a huge number of irrelevant hits that required refinement. The process of developing a search strategy was thus iterative and a range of combinations of key words were used in an attempt to maximise the relevance of the studies being identified. The complexity of searching for studies in patient experiences is illustrated by the initial strategies developed on Medline. A total of 10 strategies were recorded on the Medline database, but many more were trialled in an effort to obtain a manageable number of relevant results. A final version was decided on and in the Medline/Embase search, this strategy produced a relevancy rate of 20% in the area of cancer. The search strategy was then adapted for use with other databases, for example because none of the other databases had the refinements in terms of searching which were available on the Ovid versions of Medline and Embase. Other databases also posed problems because they did not always allow for the addition of particular filters to help refine the search in order to identify more manageable numbers of studies. Search strategies for each clinical area are included in section B.11.

B.4.1.4. Selection of papers

Titles and abstracts were read for relevance and papers judged to meet inclusion criteria were included in the study. While ideally, a second researcher would have cross-checked a sample of the studies for their relevance, in practice this was not possible because of the short time-scale and the large number of possible papers identified. However, the research team met regularly to discuss any ambiguous papers and a decision was reached about their inclusion. A number of key steps were followed in the identification and analysis of themes.

Data extraction of sub-themes and themes

Each paper that met the inclusion criteria was read in full by one researcher. Three researchers data extracted, each leading on one clinical area. As each paper was read, sub-themes were identified and linked to a generic theme. A sub-theme was defined as an aspect of patient experience, for example, patients experiencing poor information provision when making decisions. In this case the sub-theme would be linked to a broader generic theme of information. In some cases, sub-themes would relate to more than one generic theme. These themes and sub-themes were then recorded using a data extraction form, which provided a structured way of organising the information and an audit trail for how sub-themes and evolving generic themes were being linked. A key challenge in developing the themes and sub-themes was the varying level of detail provided in papers when describing sub-themes. Researchers undertook this analysis individually and any ambiguous sub-themes and their relationship to a broader generic theme were discussed within the research team. In addition to data about experiences, the data extraction sheet also recorded any key methodological limitations or fatal flaws (that would have justified exclusion), as a full quality assessment of studies was not possible within the timeframe of the study. The data extraction sheets that record all themes and sub-themes for each study are contained as a separate volume, which accompanies this report.

Developing themes and sub-themes for each clinical area

A summary evidence table of generic themes and underpinning sub-themes was then produced for each clinical area, with the references listed alongside each sub-theme. These summary tables brought together all the themes and sub-themes that emerged from the detailed data extraction sheets in a particular clinical area. See sections B.8, B.9 and B.10. A shortened version of these tables is provided in the results sections B.5.1, B.5.2 and B.5.3.

Developing the overall patient experiences framework

In order to develop the overall generic experiences framework and to manage the process of synthesising data extracted from studies, the next stage utilised the Institute of Medicine (2001) framework as a model against which to compare and contrast the themes identified in this study against the IoM framework (compassion, empathy and responsiveness, co-ordination and integration, information, communication and education, physical comfort, emotional support, relieving fear and anxiety and involvement of family and friends) identifying similarities and differences. Each element of the IoM (2001) framework was examined according to each clinical area, to review its validity, that is, whether there is evidence to support its inclusion in an overall framework. Each dimension of the IoM framework was broken down, for example information and communication were considered separately rather than amalgamating them into one category, in order to explore whether they should stand alone as themes. Once this process was complete, the research team then examined what generic themes might be missing in the IoM framework. It should be recognised that the final generic framework is by necessity a broad summary of a much wider body of evidence, with the underpinning evidence contained in the summary evidence tables in sections B.8, B.9 and B.10.

B.5. Results

Patient experiences varied across and within each clinical area. Each clinical area included a range of conditions including acute and chronic conditions, with patients accessing very different types of services. The first section reports the summary frameworks (generic and sub-themes) developed in each of the three clinical areas. The aim of these tables is to illustrate the generic themes and the sub-themes, with the detailed evidence tables presented in sections B.8, B.9 and B.10.

The second section reports the overall generic patient experiences framework developed in this scoping study.

B.5.1. Generic themes and sub-themes for Cancer

Generic themeSub-theme
CommunicationPatient-centred communication
Individualised approach
Context
Responsibility/control
Character of health care professional
Reassurance/hope
Psychosocial needs
Humour
Support of family and friends
InformationIndividualised approach
Honesty/realism
Reassurance/hope
Format and quality
Responsibility/control
Information: Diagnosis
Information: Treatment
Information: Prognosis
Decision-makingIndividualised approach
Support of family-friends
Responsibility/control
Trust in expertise
Relationship with health care professional
Medical uncertainty
Continuity of careCo-ordination
Availability/accessibility
Integration
Abandonment
Relationship with health care professional
Responsiveness to needs

Support
Facilitating coping strategies
Identity
Advocacy
Relationship with health care professional/character of health care professional
Support of family/friends
Individualised approach
Peer support/expert panels
Preparation for diagnosis/treatment
Stigma/taboos/culture
Reassurance/hope
Responsiveness to needs

The full evidence table is in section B.8.

B.5.2. Generic themes and sub-themes for Cardiovascular disease

Generic themeSub-theme
Accessing ServicesEfficient, reliable access
Waiting
Absence of services
Skills needed to access services
Barriers to accessing services
Interpreting symptoms and deciding to seek help
CommunicationOpenness
Communication style
Consistent information
Barriers to communication
Importance of communication
Consequences of poor communication
Characteristics of patient communication
Wanting more opportunity for communication with health care professionals
Staff communication skills
Content of communication with health care professionals
Communication aids
Reassurance
Continuity of CareLack of continuity
Experiences of continuity
Poor communication between health care professionals and poorly coordinated services
Feeling secure
InformationSatisfaction with information: Feeling informed
Importance of information
Wanting more information
Wanting individualised information
Format
Delivery
Timing
Not wanting to know
Recall
Sources
Involvement of family/friends
Changing information
Inconsistent information
Sharing information
Knowledge, Understanding and making sensePoor understanding
Good knowledge and understanding
Education
Being left to figure it out yourself
Importance of knowledge and understanding
Translating knowledge into action
Patients ways of making sense vary from biomedical explanations

The full evidence table is in section B.9.

B.5.3. Generic themes and sub-themes for Diabetes

Generic themeSub-themes
Patient as active participant(Underpins all sub-themes)
Responsiveness (organisation of services to meet needs and preferences)Time spent with health professionals
Time waiting
Response times
Convenience
Environment
Co-ordination
Resources
Expertise
Follow up
Mistakes
Tailoring care for individual rather than diabetes
Satisfaction
Relationships/partnership (issues to do with the relationship between patients and health professionals)Trust
Power
Control
Shared decision-making
Judgemental attitude
Being seen as a person
Respect
Continuity of care
Approachability
Empathy
Communication (style and content of verbal and non- verbal communication between patients and health professionals – overlap with all other categories)Importance of communication
Quality of communication
Listening/paying attention/acknowledging patient expertise
Language
Questions and answers
Explanations
Brusque manner
Information and support for self-care (resources provided or required, including information, education, emotional support and peer support)Importance of information and advice
Problems with information
Not wanting information
Feedback on condition
Sources of further help
Education and groups
Peer support
Need for emotional support
Lived experienceEveryday lives
Perceived unrealistic goals
Importance of families
Cultural issues
Interpretations, beliefs and meanings
Psychological factors
Perceived discrimination/injustice
Complexity of diabetes and self-care

The full evidence table is in section B.9.

B.5.4. Generic framework of patient experiences

B.5.4.1. Analysis of IoM Framework

The IoM framework provided a useful starting point for the analysis of the themes and sub-themes identified in this study as it provided us with a point of comparison on which to map our own themes and sub-themes and to revise and amend the original IoM framework according to our findings. Table 39 provides a narrative commentary of how the IoM themes were adjusted and added to.

Table 39. An analysis of the IoM Framework.

Table 39

An analysis of the IoM Framework.

An important difference between the IoM framework and the framework developed from this scoping study was the role of patients as potentially active participants in their care and the importance of lived experience as underpinning health service experiences.

B.5.4.2. Generic Patient Experiences framework

The aim of the framework presented in Table 40 is to summarise a complex patient experiences evidence base. The narrative description of each theme is thus illustrative, rather than exhaustive. The themes and sub-themes contained in the generic framework are complex and many connections exist between them. Themes such as ‘responsiveness of service - an individualised approach’ cut across other themes. Patients value health care professionals taking into account their individuality and the unique way in which they experience their condition the context of their own lives. Patients’ values, beliefs and circumstances all inform their expectations of, as well as their needs for, services. Continuity of care and the establishment of trusting, empathetic and reliable relationships with competent and insightful health care professionals is key to patients receiving such individually orientated services, and enables patients to become active participants in their own care, in partnership with health care professionals. The framework also demonstrates that patients’ experiences of health services and their experiences of living with the condition are often closely linked with their interpretations of how effectively the service meets their needs. In diabetes, some differences emerged with an over-riding emphasis on self-care and lifestyle issues in the research literature on patients’ experiences with diabetes treatment and care. The ways in which health professionals encourage and support patients (or fail to do so) are described vividly in the literature. Diabetes care presents complex challenges to patients and to healthcare staff, because of its impact on everyday life as well as its changing course, complications and co-morbidities. Good relationships with health professionals are particularly important; issues of trust, respect, power and control are described in many accounts, as are needs for two-way communication, useful information and emotional support. Expert care and services organised to meet patients’ needs (when these are available) are highly valued. While there were some differences, there were important overlaps in the generic themes and sub-themes identified in all three clinical areas.

Table 40. Generic Patient Experiences framework.

Table 40

Generic Patient Experiences framework.

B.6. Concluding comments

The aim of this scoping study was to identify the generic themes and sub-themes of patient experiences in three clinical area, cancer, cardiovascular disease and diabetes, all areas of significant disease burden, and to utilise these generic themes and sub-themes to develop a generic patient experiences framework that has potential relevance for all patients, but would need to be more widely tested. The Generic Patient Experiences Framework presented in Table 40 of this report represents a synthesis of a wide and complex evidence base, building on the IoM framework, but changing and adding important themes that emerged in this scoping study. The generic themes included in this framework are purposefully broad, in order to capture the complexity of patient experiences that lies beneath it. The evidence tables for each clinical area aim to provide an audit trail of how generic themes and sub-themes were developed directly related to the papers from which they originated. As such the Generic Patient Experiences Framework has a strong evidence base, which has the potential to contribute to the development of the Patient Experiences Guidance and the Quality Standard.

B.7. References for the thematic qualitative review: scoping report

B.7.1. Cancer References List

C1.
Yardley, et al. Receiving a Diagnosis of Lung Cancer: Patients’ Interpretations, Perceptions and Perspectives. Palliative Medicine. 2001;15:379–386. [PubMed: 11591089]
C2.
Burkitt, et al. Doctors’ Communication of Trust, Care and Respect in Breast Cancer: Qualitative Study. BMJ. 2004;328:864–869. [PMC free article: PMC387476] [PubMed: 15054034]
C3.
Murchie et al. GP-led Melanoma Follow-up: Views and Feelings of Patient Recipients. Support Cancer Care. 2010;18:225–233. [PubMed: 19430819]
C4.
O’Brein, et al. Experiences of Follow-Up After Treatment in Patients with Prostate Cancer: A Qualitative Study. BJUI. 2010;106:998–1003. [PubMed: 20230391]
C5.
Simpson, White Patients’ Experiences of Completing Treatment for Colorectal Cancer in a Scottish District General Hospital. European Journal of Cancer Care. 2006;15:172–182. [PubMed: 16643265]
C6.
Allen A. The Meaning of the Breast Cancer Follow-Up Experience for the Women who Attend. European Journal of Oncology Nursing. 2002;6(3):155–161. [PubMed: 12849590]
C7.
Renton, et al. Follow-Up in Women with Breast Cancer: The Patients’ Perspective. The Breast. 2002;11:257–261. [PubMed: 14965677]
C8.
Lydon, et al. Routine Follow up After Treatment for Ovarian Cancer in the United Kingdom: Patient and Health Professional Views. European Journal of Oncology Nursing. 2009;13:336–343. [PubMed: 19535294]
C9.
Ballinger, et al. Patients’ Decision-Making in a UK Specialist Centre with High Mastectomy Rates. The Breast. 2008;17:574–579. [PubMed: 18793856]
C10.
Lewis, et al. Patients’ and Healthcare Professionals’ Views of Cancer Follow Up: Systematic Review. The British Journal of General Practice. 2009;59(564):248–259. [PMC free article: PMC2702038] [PubMed: 19566991]
C11.
Montgomery, et al. Patients’ Expectation for Follow-Up in Breast Cancer- A Preliminary, Questionnaire-based Study. The Breast. 2008;17:347–352. [PubMed: 18455404]
C12.
Constantinidou, et al. Informational Needs of Patients with Melanoma and their Views on the Utility of Investigative Tests. The International Journal of Clinical Practice. 2009;63(11):1595–1600. [PubMed: 19832815]
C13.
Innes, Payne Advanced Cancer Patients’ Prognostic Information Preferences: A Review. Palliative Medicine. 2009;23:29–39. [PubMed: 18952746]
C14.
Hubbard, et al. Preferences for Involvement in Treatment Decision Making of Patients with Cancer: A Review of the Literature. European Journal of Oncology Nursing. 2008;12:299–318. [PubMed: 18486552]
C15.
Tarrant, et al. Is seeing a Specialist Nurse Associated with Positive Experiences of Care? The Role and Value of Specialist Nurses in Prostate Cancer Care. BMC Health Services Research. 2008;8:65–72. [PMC free article: PMC2294119] [PubMed: 18371192]
C16.
Randall, Wearn Receiving Bad News: Patients with Haematological Cancer Reflect upon Their Experience. Palliative Medicine. 2010;19:594–601. [PubMed: 16450876]
C17.
Beaver, et al. Exploring the Decision-Making Preferences of People with Colorectal Cancer. Health Expectations. 2005;8:103–113. [PubMed: 15860051]
C18.
Dancey, et al. Views of UK Melanoma Patients on Routine Follow up Care. British Journal of Plastic Surgery. 2005;58:245–250. [PubMed: 15710122]
C19.
Exley, et al. Palliative Care in the Community for Cancer and End-Stage Cardiorespiratory Disease: The Views of Patients, Lay-Carers and Health Care Professionals. Palliative Medicine. 2005;19:76–83. [PubMed: 15690872]
C20.
Mauri, et al. An Exploratory Study on the Italian Patients’ Preferences Regarding How they Would like to be Told about Their Cancer. Supportive Care in Cancer. 2009;17(12):1523–1530. [PubMed: 19343370]
C21.
So Kwok-wei, Chui Women’s Experience of Internal Radiation Treatment for Uterine Cervical Cancer. Journal of Advanced Nursing. 2007;60(2):154–161. [PubMed: 17877562]
C22.
Sharpley, Christie Patient Information Preferences Among Breast and Prostate Cancer Patients. Radiation Oncology. 2007;51:154–158. [PubMed: 17419861]
C23.
Vogel, et al. Information and Decision Making: Patients’ Needs and Experiences in the Course of Breast Cancer Treatment. Patient Education and Counseling. 2008;71:79–85. [PubMed: 18191933]
C24.
Grunfeld, et al. Advanced Breast Cancer Patients’ Perceptions of Decision Making for Palliative Chemotherapy. Journal of Clinical Oncology. 2006;24(7):1090–1098. [PubMed: 16505428]
C25.
Oskay-Özcelik, et al. Breast Cancer Patients’ Expectations in Respect of the Physician-Patient Relationship and Treatment Management Results of a Survey of 617 Patients. Annals of Oncology. 2007;18:479–484. [PubMed: 17272832]
C26.
Kirk, et al. What do Patients Receiving Palliative Care for Cancer and Their Families Want to be Told? A Canadian and Australian Qualitative Study. BMJ. 2004;10:1136–1142. [PMC free article: PMC420285] [PubMed: 15151964]
C27.
Osse, et al. The Problems Experienced by Patients with Cancer and Their Needs for Palliative Care. Supportive Care in Cancer. 2005;13:722–732. [PubMed: 15702349]
C28.
Michael K. Breaking the Bad News of Cancer: The Patient’s Perspective. The Laryngoscope. 1999;7(1):1064–1067. [PubMed: 10401842]
C29.
Elmir, et al. Against All Odds: Australian Women’s Experiences of Recovery from Breast Cancer. Journal of Clinical Nursing. 2010;19:2531–2538. [PubMed: 20636477]
C30.
Ayanian, et al. Patients’ Experiences With Care for Lung Cancer and Colorectal Cancer: Findings from the Cancer Care Outcomes Research and Surveillance Consortium. Journal of Clinical Oncology. 2010;28(27):4154–4161. [PMC free article: PMC2953972] [PubMed: 20713876]
C31.
Haas M. The Relationship between Expectations and Satisfaction: A Qualitative Study of Patients’ Experiences of Surgery for Gynaecological Cancer. Health Expectations. 1999;2:51–60. [PubMed: 11281875]
C32.
Kantsiper M, et al. Transitioning to Breast Cancer Survivorship: Perspectives of Patients, Cancer Specialists, and Primary Care Providers. Journal of General Internal Medicine. 2009;24(2):459–466. [PMC free article: PMC2763147] [PubMed: 19838851]
C33.
Salander P. Bad News from the Patient’s Perspective: An Analysis of the Written Narratives of Newly Diagnosed Cancer Patients. Social Science & Medicine. 2002;50:721–732. [PubMed: 12190266]
C34.
Schofield, et al. Psychological Responses of Patients Receiving a Diagnosis of Cancer. Annals of Oncology. 2003;14(1):48–56. [PubMed: 12488292]
C35.
Birchall, et al. Eliciting the Views of Patients with Head and Neck Cancer and Carers on Professionally Derived Standards for Care. BMJ. 2002;324:1–5. [PMC free article: PMC67766] [PubMed: 11872549]
C36.
Rottmann, et al. Patients’ Needs and Experiences at Breast Cancer Diagnosis: How Perceived Threat Influences the Physician-Patient Interaction. Journal of Psychosocial Oncology. 2010;28(2):157–172. [PubMed: 20391073]
C37.
Beaver, et al. An Exploratory Study of the Follow-Up Care Needs of Patients Treated for Colorectal Cancer. Journal of Clinical Nursing. 2010;19:3291–3300. [PubMed: 20964750]
C38.
Radwin L. Oncology Patients’ Perceptions of Quality Nursing Care. Research in Nursing & Health. 2000;23:179–190. [PubMed: 10871533]
C39.
Thorne, et al. Helpful Communications During the Diagnostic Period: An Interpretive Description of Patient Preferences. European Journal of Cancer Care. 2010;19:746–754. [PubMed: 19832891]
C40.
Thorne, et al. Hope and Probability: Patient Perspectives of the Meaning of Numerical Information in Cancer Communication. Qualitative Health Research. 2006;16(3):318–336. [PubMed: 16449684]
C41.
Oliffe, Thorne Men, Masculinities and Prostate Cancer: Australian and Canadian Patient Perspectives on Communication with Male Physicians. Qualitative Health Research. 2007;17(2):149–161. [PubMed: 17220387]
C42.
Hagerty, et al. Communicating with Realism and Hope: Incurable Cancer Patients’ Views on the Disclosure of Prognosis. Journal of Clinical Oncology. 2005;23(6):1278–1288. [PubMed: 15718326]
C43.
Butow, et al. When the Diagnosis is Cancer: Patient Communication Experiences and Preferences. Cancer. 1996;77:2630–2637. [PubMed: 8640715]
C44.
Rutten, et al. Information Needs and Sources of Information Among Cancer Patients: A Systematic Review of Research (1980–2003). Patient Education and Counseling. 2005;57:250–261. [PubMed: 15893206]
C45.
Rasmusson, Thomé Women’s Wishes and Need for Knowledge Concerning Sexuality and Relationships in Connection with Gynaecological Cancer Disease. Sexuality and Disability. 2008;26:207–218.
C46.
Andreassen S, et al. Information Needs Following a Diagnosis of Oesophageal Cancer; Self-Perceived Information Needs of Patients and Family Members Compared with the Perceptions of Healthcare Professionals: A Pilot Study. European Journal of Cancer Care. 2007;16:277–285. [PubMed: 17508949]
C47.
Andreassen, et al. Patients’ Experiences of Living with Oesophageal Cancer. Journal of Clinical Nursing. 2006;15(6):685–695. [PubMed: 16684164]
C48.
Wagner, et al. The Quality of Cancer Patient Experience: Perspectives of Patients, Family Members, Providers and Experts. Quality and Safety in Healthcare. 2010;19:484–489. [PubMed: 21127109]
C49.
Krishnasamy M. What do Cancer Patients Identify as Supportive and Unsupportive Behaviour of Nurses? A Pilot Study. European Journal of Cancer Care. 1996;5(2):103–110. [PubMed: 8716206]
C50.
Singer, et al. Quality of Care and Emotional Support from the Inpatient Cancer Patient’s Perspective. Lagenbecks Archives of Surgery. 2009;394:723–731. [PubMed: 19330348]
C51.
Fish J. Coming Out About Breast Cancer: Research Report on Lesbian and Bisexual Women’s Experiences of Breast Cancer. National Cancer Action Team. 2010
C52.
Mallinger, et al. Patient-Centred Care and Breast Cancer Survivors’ Satisfaction with Information. Patient Education and Counseling. 2005;57:342–349. [PubMed: 15893218]
C53.
Llewellyn, et al. Striking the Right Balance: A Qualitative Pilot Study Examining the Role of Information on the Development of Expectations in Patients Treated for Head and Neck Cancer. Psychology, Health & Medicine. 2005;10(2):180–193.
C54.
Elkin, et al. Desire for Information and Involvement in Treatment Decisions: Elderly Cancer Patients’ Preferences and their Physicians’ Perceptions. Journal of Clinical Oncology. 2007;26(33):5275–5280. [PubMed: 18024875]
C55.
Watanabe Y. Japanese Cancer Patient Participation in, and Satisfaction with, Treatment-Relations Decision-Making: A Qualitative Study. BMC Public Health. 2008;8:77–86. [PMC free article: PMC2291463] [PubMed: 18302800]

B.7.2. Cardiovascular Reference List

CV1.
Kennelly C, Bowling A. Suffering in Deference: a focus group study of older cardiac patients’ preferences for treatment and perceptions of risk. Qual. Health Care. 2001;10:i23–i28. [PMC free article: PMC1765735] [PubMed: 11533434]
CV2.
Doering LV, McGuire AW, Rourke D. Recovering from Cardiac Surgery: What Patients want to know. Am J. Crit. Care. 2002;11:333–343. [PubMed: 12102434]
CV3.
Tod AM, Lacey EA, McNeill F. ‘I’m still waiting…’: barriers to accessing cardiac rehabilitation services. J. of Advanced Nursing. 2002;40(4):421–31. [PubMed: 12421401]
CV4.
Clark AM. ‘It’s like an explosion in your life…’: Lay perspectives on stress and myocardial infarction. J. of Clinical Nursing. 2003;12:544–553. [PubMed: 12790868]
CV5.
Webster RA, Thompson DR, Mayou RA. The experiences and needs of Gujurati Hindu patients and partners in the first month after myocardial infarction. European J. of Cardiovascular Nursing. 2002;1:69–76. [PubMed: 14622870]
CV6.
Kristofferzon M-L, Löfmark R, Carlsson M. Myocardial Infarction: gender differences in coping and social support. J. of Advanced Nursing. 2003;44(4):360–374. [PubMed: 14651708]
CV7.
Jacobsson A, Pihl E, Mårtensson J, Fridlund B. Emotions, the meaning of food and heart failure: a grounded theory study. J. of Advanced Nursing. 2004;46(5):514–522. [PubMed: 15139940]
CV8.
Ivarsson B, Larsson S, Sjöberg T. Patients’ experiences of support while waiting for cardiac surgery. A critical incident technique analysis. European J. of Cardiovascular Nursing. 2004;3:183–191. [PubMed: 15234322]
CV9.
Shaw A, Ibrahaim S, Reid F, Usher M, Rowlands G. Patients’ perspectives of the doctor-patient relationship and information giving across a range of literacy levels. Patient Education and Counseling. 2009;75:114–120. [PubMed: 19041210]
CV10.
Hartford K. Telenursing and patients’ recovery from Bypass surgery. J. of Advanced Nursing. 2005;50(5):459–468. [PubMed: 15882362]
CV11.
Price JR, Mayou RA, Bass CM, Hames RJ, Sprigings D, Birkhead JS. Developing a Rapid Access chest pain clinic: Qualitative studies of patients’ needs and experiences. J. of Psychosomatic Research. 2005;59:237–246. [PubMed: 16223627]
CV12.
Wingham J, Dalal HM, Sweeney KG, Evans PH. Listening to Patients: Choice in cardiac rehabilitation. European J. of Cardiovascular Nursing. 2006;5:289–294. [PubMed: 16545616]
CV13.
Brännström M, Ekman I, Norberg A, Boman K, Strandberg G. Living with sever chronic heart failure in palliative advanced care home. European J. of Cardiovascular Nursing. 2006;5:295–302. [PubMed: 16546447]
CV14.
Johansson I, Swahn E, Strömberg A. Manageability, vulnerability and interaction: A qualitative analysis of acute myocardial infarction patients’ conceptions of the event. European J. of Cardiovascular Nursing. 2007;6:184–191. [PubMed: 16997634]
CV15.
MacInnes JD. The illness perceptions of women following symptoms of acute myocardial infarction: A self-regulatory approach. European J. of Cardiovascular Nursing. 2006;5:280–288. [PubMed: 16545615]
CV16.
Leegaard M, Fagermoen MS. Patients’ key experiences after coronary artery bypass grafting: a synthesis of qualitative studies. Scand. J. Caring Sci. 2008;22:616–628. [PubMed: 18785919]
CV17.
Nakano A, Mainz J, Lomborg K. Patient perception and assessment of admission to acute cardiac care unit. European J. of Cardiovascular Nursing. 2008;7:10–15. [PubMed: 17602872]
CV18.
Hagberth V, Sjöberg T, Ivarsson B. Older women with a serious cardiac event experience support with a Vifladt & Hopen inspired patient group education programme. European J. of Cardiovascular Nursing. 2008;7:140–146. [PubMed: 17962079]
CV19.
Jones MI, Greenfield S, Jolly K. Patients’ experience of home and hospital based cardiac rehabilitation; A focus group study. European Journal of Cardiovascular Nursing. 2009;8:9–17. [PubMed: 18718816]
CV20.
Johnson M, Goodacre S, Tod A, Read S. Patients’ opinions of acute chest pain care: a qualitative evaluation. J. of Advanced Nursing. 2008;65(1):120–129. [PubMed: 19032504]
CV21.
Leegaard, Nåden, Fagermoen Postoperative pain and self-management: women’s experiences after cardiac surgery. J. of Advanced Nursing. 2008;63950:476–485. [PubMed: 18727750]
CV22.
Lau, et al. Experiences of sudden cardiac arrest survivors regarding prognostication and advance care planning. Resuscitation. 2010;81:982–986. [PubMed: 20435392]
CV23.
Scott, Thompson Assessing the information needs of post-myocardial infarction patients: a systematic review. Patient Education and Counseling. 2003;50:167–177. [PubMed: 12781932]
CV24.
Riegel B, Carlson B. Facilitators and barriers to heart failure self-care. Patient Education and Counseling. 2002;46:287–295. [PubMed: 11932128]
CV25.
Kamphuis, et al. ICD: a qualitative study of patient experience the first year after implantation. J of Clinical Nursing. 2004;13:1008–10016. [PubMed: 15533107]
CV26.
Radcliffe, Harding, Rothman, Feder ‘It got the right spot’ The patient experience of primary angioplasty: A qualitative study. J of Cardiovascular Nursing. 2009;8:216–222. [PubMed: 19299202]
CV27.
Astin, et al. The information needs of patients treated with primary angioplasty for heart attack: An exploratory study. Patient Education and Counseling. 2008;73:325–332. [PubMed: 18691846]
CV28.
Rogers, et al. Knowledge and communication difficulties for patients with chronic heart failure: qualitative study. BMJ. 2000;321:605–7. [PMC free article: PMC27476] [PubMed: 10977838]
CV29.
Ivarsson, Larsson, Sjöberg Postponed or cancelled heart operations from the patient’s perspective. J. of Nursing Management. 2004;12:28–36. [PubMed: 15101453]
CV30.
Emslie C. Women, men and coronary heart disease: a review of the qualitative literature. Journal of Advanced Nursing. 2005;51(4):382–395. [PubMed: 16086807]
CV31.
Leegaard, Rust[slash in circle]en, Fagermoen Interference of Postoperative Pain on Women’s Daily Life after Early Discharge from Cardiac Surgery. Pain Management Nursing. 2010;11(2):99–107. [PubMed: 20510840]
CV32.
Crinson, et al. Coronary heart disease and the management of risk: Patient perspectives of outcomes associated with the clinical implementation of the National Service Framework targets. Health, Risk & Society. 2007;9(4):359–373.
CV33.
Harding, et al. Meeting the Communication Needs of Chronic Heart Failure Patients. J. of Pain and Symptom Management. 2008;36(2):149–156. [PubMed: 18599259]
CV34.
Dunckley, et al. Coronary artery bypass grafting: Patients’ and health professionals’ views of recovery after hospital discharge. European J. of Cardiovascular Nursing. 2008;7:36–42. [PubMed: 17644041]
CV35.
Ononeze, et al. Patients and health professionals’ perspectives on the sociocultural influences of secondary cardiac behaviour: a qualitative study of the implications in policy and practice. Family Practice. 2006;23:587–596. [PubMed: 16735413]
CV36.
Williams, et al. Getting on with life: Accepting the permanency of an Implantable Cardioverter Defibrillator. International J. of Nursing Practice. 2007;13:166–172. [PubMed: 17518790]
CV37.
Hutton, Perkins A qualitative study of men’s experiences of myocardial infarction. Psychology, Health & Medicine. 2008;13(1):87–97. [PubMed: 18066922]
CV38.
Williams, et al. Reasons for attending and not attending a support group for recipients of implantable cardioverter defibrillators and their carers. International Journal of Nursing Practice. 2004;10:127–133. [PubMed: 15149460]
CV39.
Hird, Upton, Chesson ‘Getting back to normal’: patients’ expectations of cardiac rehabilitation. Physiotherapy. 2004;90:125–131.
CV40.
Swanlund. Successful cardiovascular medication management processes as perceived by community-dwelling adults over age 74. Applied Nursing Research. 2010;23:22–29. [PubMed: 20122507]
CV41.
Tagney, Jenny A literature review comparing the experiences and emergent needs of adult patients with permanent pacemakers (PPMs) and implantable cardioverter defibrillators (ICDs). J of Clinical Nursing. 2010;19:2081–1089. [PubMed: 20477907]
CV42.
Jones, et al. ‘DNA’ may not mean ‘did not participate’: a qualitative study of reasons for non-adherence at home-and centre-based cardiac rehabilitation. Family Practice. 2007;24(4):343–357. [PubMed: 17630271]
CV43.
Pâquet, et al. Re-engineering cardiac rehabilitation programmes: considering the patient’s point of view. Advanced Nursing. 2005;51(6):567–576. [PubMed: 16129007]
CV44.
Leegaard M, Fagermoen MS. Women’s descriptions of postoperative pain and pain management after discharge for cardiac surgery. Journal of Clinical Nursing. 2008;17:2051–2060. [PubMed: 18705782]
CV45.
Rodriguez, et al. “They diagnosed a bad heart”: A qualitative exploration of patients’ knowledge about and experiences of heart failure. Heart & Lung. 2008;37(4):257–265. [PubMed: 18620101]
CV46.
Jacobson, et al. A Patient-derived Perspective on Health-related Quality of Life with Peripheral Arterial Disease. J. of Nursing Scholarship. 2002;34(1):55–60. [PubMed: 11901968]
CV47.
Wang W, Thompson DR, Chair SY, Twinn SF. Chinese couples’ experiences during convalescence from a first heart attack: a focus group study. Journal of Advanced Nursing. 2007;61(3):307–315. [PubMed: 18197865]
CV48.
Horne, Payne Removing the Boundaries: Palliative care for patients with heart failure. Palliative Medicine. 2004;18:291–296. [PubMed: 15198119]
CV49.
Rosenfeld. Understanding treatment-seeking delay in women with acute myocardial infarction: Descriptions of decision-making patterns. American J. Critical Care. 2005;14:285–293. [PubMed: 15980419]
CV50.
Ivarsson B, Larsson S, Lührs Sjöberg T. Patients perceptions of information about risks at cardiac surgery. Patient Education and Counseling. 2007;67:32–38. [PubMed: 17350783]
CV51.
Benson J, Britten N. What effects do patients feel from their antihypertensive tablets and how do they react to them? Qualitative analysis of interviews with patients. Family Practice. 2006;23(1):80–87. [PubMed: 16107491]
CV52.
Cortis JD, Williams A. Palliative and supportive needs of older adults with heart failure. International Nursing Review. 2007;54:263–270. [PubMed: 17685910]
CV53.
Murray SA, Boyd K, Kendall M, Worth A, Benton TF, Clausen H. Dying of lung cancer or cardiac failure: prospective qualitative interview study of patients and their carers in the community. BMJ. 2002;325:929. [PMC free article: PMC130056] [PubMed: 12399341]
CV54.
Ågård A, Löfmark R, Edvardsson N, et al. Views of patients with heart failure about their role in the decision to start implantable cardioverter-defibrillator treatment: prescription rather than participation. J. Med. Ethics. 2007;33:514–518. [PMC free article: PMC2598204] [PubMed: 17761818]
CV55.
Höglund, Anna T, Winblad U, Arnetz A, Arnetz J. Patient participation during hospitalization for myocardial infarction: perceptions among patients and personnel. Scandinavian Journal of Caring Sciences. 2010;24:482–489. [PubMed: 20230518]
CV56.
Jensen BO, Petersson K. The illness experiences of patients after a first time myocardial infarction. Patient Education and Counseling. 2003;51:123–131. [PubMed: 14572941]
CV57.
Nordgren L, Asp M, Fagerberg I. Support as experienced by men living with heart failure in middle age: A phenomenological study. International Journal of Nursing Studies. 2008;45:1344–1354. [PubMed: 18022175]
CV58.
Weaver NF, Murtagh MJ, Thomson RG. How do newly diagnosed hypertensives understand ‘risk’? Narratives used in coping with risk. Family Practice. 2006;23(6):637–643. [PubMed: 16868007]
CV59.
Higginbottom G. “I didn’t tell them. Well they never ask”: Lay understandings of hypertension and their impact on chronic disease management: implications for nursing practice in primary care. Journal of Research in Nursing. 2008;13(2):89–99.
CV60.
Tolmie EP, Lindsay GM, Kelly T, Tolson D, Baxter S, Belcher PR. Are older patients’ cardiac rehabilitation needs being met? Journal of Clinical Nursing. 2009;18:1878–1888. [PMC free article: PMC3787784] [PubMed: 19638048]
CV61.
Page M, Jackman K, Snowden P. The experiences of patients undergoing percutaneous transluminal coronary angioplasty: a qualitative exploration. Connect: The World of Critical Care Nursing. Dec 22, 2008. Available online: http://www​.thefreelibrary.com/ The experiences of patients undergoing percutaneous transluminal...-a0200117643 (26 Jan 2011)
CV62.
Shih S-N, Gau M-L, Kao Lo C-H, Shih F-J. Health needs instrument for hospitalized single-living Taiwanese elders with heart disease: triangulation research design. Journal of Clinical Nursing. 2005;14:1210–1222. [PubMed: 16238767]
CV63.
Gullick J, Shimadry B. Using patient stories to improve quality of care. Nursing Times. 2008;104(10):33–34. Available online: http://www​.nursingtimes​.net/using-patient-stories-to-improve-quality-of-care​/910137.article (26Jan 2011)

B.7.3. Diabetes Reference List

D1.
Lawton J, Peel E, Parry O, et al. Lay perceptions of type 2 diabetes in Scotland: bringing health services back in. Social Science and Medicine. 2005;60:1423–1435. [PubMed: 15652676]
D2.
Gillibrand W, Flynn M. Forced externalisation of control in people with diabetes: a qualitative exploratory study. Journal of Advanced Nursing. 2001;34(4):501–510. [PubMed: 11380717]
D3.
Alazri MH, Neal RD, Heywood P, Leese B. Patients’ experiences of continuity in the care of type 2 diabetes: a focus group study in primary care. British Journal of General Practice. 2006 July:488–495. 2006. [PMC free article: PMC1872058] [PubMed: 16834874]
D4.
Lawton J, Parry O, Peel E, Douglas M. Diabetes service provision: a qualitative study of newly diagnosed Type 2 diabetes patients’ experiences and views. Diabetic Medicine. 2005;22:1246–1251. [PubMed: 16108856]
D5.
Gale L, Vedhara K, Searle A, et al. Patients’ perspectives on foot complications in type 2 diabetes: a qualitative study. British Journal of General Practice. 2008 August:555–563. 2008. [PMC free article: PMC2566520] [PubMed: 18682014]
D6.
Gamsu DS, Sutton MS, Bennett L, Ward JD. The development of a psychoeducational group intervention for overweight women with type 2 diabetes mellitus: a service evaluation. Practical Diabetes International. 2002;19(2):1246–1251.
D7.
Courtenay M, Stenner K, Carey N. The views of patients with diabetes about nurse prescribing. Diabetic Medicine. 2010;27:1049–1054. [PubMed: 20722679]
D8.
Lawton J, Ahmad N, Hanna L, et al. Diabetes service provision: a qualitative study of the experiences and views of Pakistani and Indian patients with type 2 diabetes. Diabetic Medicine. 2006;23:1003–1007. [PubMed: 16922707]
D9.
Edwards A, Thomas R, Williams R, et al. Presenting risk information to people with diabetes: Evaluating effects and preferences for different formats by a web-based randomised controlled trial. Patient Education and Counseling. 2006;63:336–349. [PubMed: 16860964]
D10.
Vermeire E, Hearnshaw H, et al. Obstacles to adherence in living with type-2 diabetes: an international qualitative study using meta-ethnography (EUROBSTACLE). Primary Care Diabetes. 2007;1:25–33. 2007. [PubMed: 18632016]
D11.
Phillips A. Experiences of patients with type 2 diabetes starting insulin therapy. Nursing Standard. 2007;21(23):35–41. [PubMed: 17348595]
D12.
McDowell JRS, McPhail K, Halyburton G, et al. Perceptions of a service redesign by adults living with type 2 diabetes. Journal of Advanced Nursing. 2009;65(7):1432–1441. [PubMed: 19457006]
D13.
Armstrong N, Powell J. Patient perspectives on health advice hosted on internet discussion boards: a qualitative study. Health Expectations. 2009;12:313–320. [PubMed: 19555377]
D14.
Brown K, Avis M, Hubbard M. Health Beliefs of African-Caribbean people with type 2 diabetes: a qualitative study. British Journal of General Practice. 2007 June:461–469. 2007. [PMC free article: PMC2078187] [PubMed: 17550671]
D15.
Collins S, Reynolds F. How do adults with cystic fibrosis cope following a diagnosis of diabetes? Journal of Advanced Nursing. 2008;64(5):478–487. [PubMed: 19146516]
D16.
Eborall H, Davies R, Kinmonth L, et al. Patients’ experiences of screening for type 2 diabetes: prospective qualitative study embedded in the addition (Cambridge) randomised controlled trial. BMJ. 2007;335(7618):486–492. [PMC free article: PMC1971192] [PubMed: 17761995]
D17.
Johnson M, Newton P, Goyder E. Patient and professional perspectives on prescribed therapeutic footwear for people with diabetes: a vignette study. Patient Education and Counseling. 2006;64:167–172. [PubMed: 16469472]
D18.
Kay C, Davies J, Gamsu D, Jarman M. An exploration of the experiences of young women living with type 1 diabetes. Journal of Health Psychology. 2009;14:242–250. [PubMed: 19237491]
D19.
King N, Carroll C, Newton P, Dornan T. “You can’t cure it so you have to endure it”: the experience of adaptation to diabetic renal disease. Qualitative Health Research. 2002;12:329–346. [PubMed: 11918099]
D20.
Kinmonth AL, Woodcock A, Griffin S, et al. Randomised controlled trail of patient centred care of diabetes in general practice: impact on current wellbeing and future disease risk. BMJ. 1998 October 31;317:1204–1208. 1998. [PMC free article: PMC28704] [PubMed: 9794859]
D21.
Lawton J, Fox A, Fox C, Kinmouth AL. Participating in the UK Prospective Diabetes Study (UKPDS): a qualitative study of patients’ experiences. British Journal of General Practice. 2003 May:394–398. 2003. [PMC free article: PMC1314601] [PubMed: 12830569]
D22.
Lawton J, Peel E, Douglas M, Parry O. ‘Urine testing is a waste of time’: newly diagnosed type 2 diabetes patients’ perceptions of self-monitoring. Diabetic Medicine. 2004;21:1045–1048. [PubMed: 15317613]
D23.
Naithani S, Gulliford M, Morgan M. Patients’ perceptions and experiences of ‘continuity of care’ in diabetes. Health Expectations. 2006;9:118–129. [PubMed: 16677191]
D24.
Okleford E, Shaw RL, Willars J, Dixon-Woods M. Education and self-management for people newly diagnosed with type 2 diabetes: a qualitative study of patients’ views. Chronic Illness. 2008;4:237. [PubMed: 18322027]
D25.
Lawton J, Ahmad N, Hallowell N, Hanna L, Douglas M. Perceptions and experiences of taking oral hypoglycaemic agents among people of Pakistani and Indian origin: qualitative study. BMJ. 2005;330(7502):1247–1252. [PMC free article: PMC558094] [PubMed: 15883139]
D26.
Rhodes P, Nocon A. A problem of communication? Diabetes care among Bangladeshi people in Bradford Health and Social Care in the Community. 2003;11(1):45–54. [PubMed: 14629232]
D27.
Riazi A, Hammersley S, Eiser C, et al. Patients’ experiences of the diabetes annual review. Practical Diabetes International. 2000;17(7):226–230.
D28.
Lindenmeyer A, Whitlock S, Sturt J, Griffiths F. Patient engagement with a diabetes self-management intervention. Chronic Illness. 2010;6(4):306–316. [PubMed: 20921038]
D29.
Troughton J, Jarvis J, Skinner C, et al. Waiting for diabetes: Perceptions of people with pre-diabetes: a qualitative study. Patient Education and Counseling. 2008;72:88–93. [PubMed: 18367365]
D30.
Pooley CG, Gerrard C, Hollis S, et al. ‘Oh it’s a wonderful practice … you can talk to them’: a qualitative study of patients’ and health professionals’ views on the management of type 2 diabetes. Health and Social Care in the Community. 2001;9(5):318–326. [PubMed: 11560747]
D31.
Hornsten A, Lundman B, Selstam EK, Sandstrom H. Patient satisfaction with diabetes care. Journal of Advanced Nursing. 2005;51(6):609–617. [PubMed: 16129011]
D32.
Rayman K, Ellison G. Home alone: the experience of women with type 2 diabetes who are new to intensive control. Health Care for Women International. 2004;25:900–915. [PubMed: 15513798]
D33.
Burke J, Earley M, Dixon LD, et al. Patients with diabetes speak: exploring the implications of patients’ perspectives for their diabetes appointments. Health Communication. 2006;19(2):103–114. [PubMed: 16548701]
D34.
Smith SM, O’Leary M, Bury G, et al. A qualitative investigation of the views and health beliefs of patients with type 2 diabetes following the introduction of a shared care service. Diabetic Medicine. 2003;20:853–857. [PubMed: 14510868]
D35.
Abdulhadi N, Al Shafaee M, Freudenthal S, et al. Patient-provider interaction from the perspectives of type 2 diabetes patients in Muscat, Oman: a qualitative study. BMC Health Services Research. 2007;7:162. [PMC free article: PMC2174468] [PubMed: 17925030]
D36.
Berg M, Sparud-Lundin C. Experiences of professional support during pregnancy and childbirth – a qualitative study of women with type 1 diabetes. BMC Pregnancy and Childbirth. 2009;9:27. [PMC free article: PMC2725032] [PubMed: 19575789]
D37.
Tang SYS, Anderson JM. Human agency and the process of healing: lessons learned form women living with a chronic illness – ‘re-writing the expert’ Nursing Inquiry. 1999;6:83–93. [PubMed: 10696200]
D38.
Ciechanowski P, Katon WJ. The interpersonal experience of health care through the eyes of patients with diabetes. Social Science and Medicine. 2006;63:3067–3079. [PubMed: 16997440]
D39.
Wellard SJ, Cox H, Bhujoharry C. Issues in the provision of nursing care to people undergoing cardiac surgery who also have type 2 diabetes. International Journal of Nursing Practice. 2007;13:222–228. [PubMed: 17640243]
D40.
Frandsen KB, Kristensen JS. Diet and lifestyle in type 2 diabetes: the patients’ perspective. Practical Diabetes International. 2002;19(3):77–80.
D41.
Rasmusson B, Wellard S, Nankervis A. Consumer issues in navigating health care services for type 1 diabetes. Journal of Clinical Nursing. 2001;10:628–634. [PubMed: 11822513]
D42.
Haugbolle LS, Devantier K, Frydenlund B. A user perspective on type 1 diabetes: sense of illness, search for freedom and the role of the pharmacy. Patient Education and Counseling. 2002;47:361–368. [PubMed: 12135828]
D43.
Broom DH. Familiarity breeds neglect? Unanticipated benefits of discontinuous primary care. Family Practice. 2003;20(5):503–507. [PubMed: 14507788]
D44.
Svenningsson I, Gedda B, Marklund B. Experiences of the encounter with the diabetes team – a comparison between obese and normal-weight type 2 diabetic patients. Patient Education and Counseling. 2011;82:58–62. [PubMed: 20434292]
D45.
Cobden DS, Niessen LW, Barr CE, et al. Relationships among self-management, patient perceptions of care, and health economic outcomes for decision-making and clinical practice in type 2 diabetes. Value in Health. 2010;13(1):138–147. [PubMed: 19695005]
D46.
Matthews SM, Peden AR, Rowles GD. Patient-provider communication: understanding diabetes management among adult females. Patient Education and Counseling. 2009;76:31–37. [PubMed: 19157762]
D47.
McMurray M, Davies M. What do men with diabetes and erectile dysfunction think about the services they receive? Practical Diabetes. 2006;23(4):153–156.
D48.
Stuckey HL, Tisdell EJ. The role of creative expression in diabetes: an exploration into the meaning-making process. Qualitative Health Research. 2010;20(1):42–56. [PubMed: 19926796]
D49.
Gafvels CM, Lithner FG. Insulin-treated diabetic patients: Use of, experience of and attitudes to diabetes care. European Journal of Public Health. 1996;6(4):262–269.
D50.
Lindmark A, Smide B, Leksell J. Perception of healthy lifestyle information in women with gestational diabetes. European Diabetes Nursing. 2010;7(1):16–20.
D51.
Griffiths F, Lowe P, Boardman F, et al. Becoming pregnant: exploring the perspectives of women living with diabetes. British Journal of General Practice. 2008;58:184–190. [PMC free article: PMC2249794] [PubMed: 18318971]
D52.
Richards C, Morris M, Booker S, Johnson A. What do people with type 1 diabetes find helpful in health professionals? Results from a focus group study. Practical Diabetes International. 2006;23(6):249–252.
D53.
Vermeire E, Van Royen P, Coenen S, et al. The adherence of type 2 diabetes patients to their therapeutic regimes: a qualitative study from the patient’s perspective. Practical Diabetes International. 2003;20(6):209–214.

B.8. Cancer patient experiences generic and sub-themes evidence table

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B.9. Cardiovascular patient experiences generic and sub-themes evidence table

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B.10. Diabetes Patient Experiences Generic and Sub-themes Evidence Table

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B.11. Search strategies

Cancer Search Strategy

Embase/Medline combined

Database: EMBASE <1980 to 2010 Week 47>, Ovid MEDLINE(R) <1950 to November Week 3 2010>

Search Strategy:

  1. (patient* adj5 experience*).ab,ti. (166535)
  2. (patient* adj5 expectation*).ab,ti. (9592)
  3. (patient* adj5 preference*).ab,ti. (16417)
  4. (patient* adj5 need*).ab,ti. (133276)
  5. (Patient* adj5 perspective*).ab,ti. (14175)
  6. (patient* adj5 attitude*).ab,ti. (13309)
  7. (patient* adj5 view*).ab,ti. (20592)
  8. (patient* adj5 opinion*).ab,ti. (6809)
  9. (patient* adj5 choice*).ab,ti. (28784)
  10. or/1–9 (384869)
  11. exp “Delivery of Health Care”/ (1984785)
  12. service delivery.ab,ti. (10886)
  13. 11 or 12 (1989119)
  14. patient satisfaction.ab,ti. (31312)
  15. exp patient satisfaction/ (108716)
  16. 14 or 15 (118255)
  17. intervention*.ab,ti. (827093)
  18. (patient adj reported adj outcome adj measure*).ab,ti. (451)
  19. quality of life.ab,ti. (218664)
  20. (SF36 or SF-36).ab,ti. (20584)
  21. EQ5D.ab,ti. (202)
  22. editorial.pt. (628387)
  23. exp “Quality of Life”/ (253171)
  24. or/17–23 (1727293)
  25. 10 and 13 and 16 (12437)
  26. 25 not 24 (9386)
  27. limit 26 to (english language and humans) (8174)
  28. limit 27 to yr=“2000 -Current” (6238)
  29. cancer.ab,ti. (1655267)
  30. exp Neoplasms/ (4703833)
  31. 29 or 30 (4926196)
  32. 28 and 31 (761)
  33. remove duplicates from 32 (665)

PsycInfo

No relevant year or language limiters available

Wed Dec 15 10:58:32 EST 2010

CSA

Database: PsycINFO

Query: (KW=cancer) and(((TI=((Patient experience*) or (Patient perspective*) or (patient attitude*)) or TI=((patient view*) or (patient opinion*) or (patient expectation*)) or TI=((patient satisfaction) or (patient need*))) or(AB=((Patient experience*) or (Patient perspective*) or (patient attitude*)) or AB=((patient view*) or (patient opinion*) or (patient expectation*)) or AB=((patient satisfaction) or (patient need*)))) or(DE=information)) Total hits = 682

Assia

Limited to 1995 - 2010 English only

Wed Dec 15 10:19:53 EST 2010

CSA

Multiple Databases

Query: (KW=cancer) and(((TI=((Patient experience*) or (Patient perspective*) or (patient attitude*)) or TI=((patient view*) or (patient opinion*) or (patient expectation*)) or TI=((patient satisfaction) or (patient need*))) or(AB=((Patient experience*) or (Patient perspective*) or (patient attitude*)) or AB=((patient view*) or (patient opinion*) or (patient expectation*)) or AB=((patient satisfaction) or (patient need*)))) or (DE=information)) Total hits = 441

Cinahl

EBSCOhost

Strategy 1

S5.

S3 and S4 Search modes - Boolean/Phrase - View Results (2657)

S4.

TX cancer Search modes - Boolean/Phrase - View Results (113199) Search

S3.

S1 or S2 Search modes - Boolean/Phrase - View Results (73735

S2.

MW information Limiters - Published Date from: 19950101-20101231; English Language; Exclude MEDLINE records - View Results (62075)

S1.

TX Patient experience* or TX patient perspective* or TX patient attitude* or TX patient view* or TX patient opinion* or TX patient expectation* or TX patient experience* or TX patient satisfaction or TX patient need* Limiters - Published Date from: 19950101-20101231; English Language; Exclude MEDLINE records

Strategy 2

S4.

(S1 and S2 and S3) Search modes - Boolean/Phrase - CINAHL 72

S3.

TX cancer Limiters - Published Date from: 19950101-20101231; English Language; Exclude MEDLINE records - Database - CINAHL 36003

S2.

MW Information Limiters - Published Date from: 19950101-20101231; English Language; Exclude MEDLINE records - Search modes - Boolean/Phrase Interface - Database - CINAHL 62154

S1.

TX Patient experience* or TX patient perspective* or TX patient attitude* or TX patient view* or TX patient opinion* or TX patient expectation* or TX patient experience* or TX patient satisfaction or TX patient need* Limiters - Published Date from: 19950101-20101231; English Language; Exclude MEDLINE records Search modes - Boolean/Phrase Interface - EBSCOhost - database - CINAHL 12268

Cardiovascular Search Strategy

Embase/Medline combined

Duplicates excluded by system – Medline, Embase, Abstract preferences

Database: EMBASE <1980 to 2010 Week 50>, Ovid MEDLINE(R) <1950 to November Week 3 2010>

Search Strategy:

  1. (patient* adj5 experience*).ab,ti. (167089)
  2. (patient* adj5 expectation*).ab,ti. (9616)
  3. (patient* adj5 preference*).ab,ti. (16462)
  4. (patient* adj5 need*).ab,ti. (133721)
  5. (Patient* adj5 perspective*).ab,ti. (14223)
  6. (patient* adj5 attitude*).ab,ti. (13340)
  7. (patient* adj5 view*).ab,ti. (20633)
  8. (patient* adj5 opinion*).ab,ti. (6832)
  9. (patient* adj5 choice*).ab,ti. (28880)
  10. or/1–9 (386096)
  11. exp “Delivery of Health Care”/ (1991091)
  12. service delivery.ab,ti. (10910)
  13. 11 or 12 (1995428)
  14. patient satisfaction.ab,ti. (31397)
  15. exp patient satisfaction/ (109005)
  16. 14 or 15 (118553)
  17. intervention*.ab,ti. (829630)
  18. (patient adj reported adj outcome adj measure*).ab,ti. (457)
  19. quality of life.ab,ti. (219606)
  20. (SF36 or SF-36).ab,ti. (20681)
  21. EQ5D.ab,ti. (204)
  22. editorial.pt. (629780)
  23. exp “Quality of Life”/ (254379)
  24. or/17–23 (1732345)
  25. 10 and 13 and 16 (12447)
  26. 25 not 24 (9393)
  27. limit 26 to (english language and humans) (8180)
  28. limit 27 to yr=“2000 -Current” (6244)
  29. cardi*.ab,ti. (1432505)
  30. exp Cardiovascular Diseases/ (3856886)
  31. or/29–30 (4408820)
  32. 28 and 31 (424)
  33. remove duplicates from 32 (373)

PsycInfo

PsycInfo – no relevant year or language limiters available

Wed Dec 15 10:35:31 EST 2010

CSA

Database: PsycINFO

Query: (KW=cardi*) and(((TI=((Patient experience*) or (Patient perspective*) or (patient attitude*)) or TI=((patient view*) or (patient opinion*) or (patient expectation*)) or TI=((patient satisfaction) or (patient need*))) or(AB=((Patient experience*) or (Patient perspective*) or (patient attitude*)) or AB=((patient view*) or (patient opinion*) or (patient expectation*)) or AB=((patient satisfaction) or (patient need*)))) or(DE=information)) Total hits = 131

Assia

Assia - Limited to 1995 – 2010, English only

Wed Dec 15 10:32:56 EST 2010 CSA

Query: (KW=cardi*) and(((TI=((Patient experience*) or (Patient perspective*) or (patient attitude*)) or TI=((patient view*) or (patient opinion*) or (patient expectation*)) or TI=((patient satisfaction) or (patient need*))) or(AB=((Patient experience*) or (Patient perspective*) or (patient attitude*)) or AB=((patient view*) or (patient opinion*) or (patient expectation*)) or AB=((patient satisfaction) or (patient need*)))) or(DE=information)) Toal hits = 62

Cinahl

Via Ebsco

Search 1

S5.

S3 and S4 Search modes - Boolean/Phrase - View Results (1300)

S4.

S1 or S2 Search modes - Boolean/Phrase - View Results (73840)

S3.

TX cardi* Search modes - Boolean/Phrase - View Results (133384)

S2.

MW Information Limiters - Published Date from: 19950101-20101231; English Language; Exclude MEDLINE records Search modes - Boolean/Phrase - View Results (62154)

S1.

TX Patient experience* or TX patient perspective* or TX patient attitude* or TX patient view* or TX patient opinion* or TX patient expectation* or TX patient experience* or TX patient satisfaction or TX patient need* Limiters - Published Date from: 19950101-20101231; English Language; Exclude MEDLINE records - View Results (12268)

Strategy 2

S4.

S1 and S2 and S3 Search modes - Boolean/Phrase Interface - EBSCOhost

Search Screen - Advanced Search - Database - Cinahl 13

S3.

TX cardi* Search modes - Boolean/Phrase Database - CINAHL 133384

S2.

MW Information Limiters - Published Date from: 19950101-20101231; English Language; Exclude MEDLINE records - Search modes - Boolean/Phrase Interface - Database - CINAHL 62154

S1.

TX Patient experience* or TX patient perspective* or TX patient attitude* or TX patient view* or TX patient opinion* or TX patient expectation* or TX patient experience* or TX patient satisfaction or TX patient need* - View Results (12268)

Diabetes Search Strategy

Medline/Embase combined

Database: EMBASE <1980 to 2010 Week 47>, Ovid MEDLINE(R) <1950 to November Week 3 2010>

Search Strategy:

  1. (patient* adj5 experience*).ab,ti. (166535)
  2. (patient* adj5 expectation*).ab,ti. (9592)
  3. (patient* adj5 preference*).ab,ti. (16417)
  4. (patient* adj5 need*).ab,ti. (133276)
  5. (Patient* adj5 perspective*).ab,ti. (14175)
  6. (patient* adj5 attitude*).ab,ti. (13309)
  7. (patient* adj5 view*).ab,ti. (20592)
  8. (patient* adj5 opinion*).ab,ti. (6809)
  9. (patient* adj5 choice*).ab,ti. (28784)
  10. or/1–9 (384869)
  11. exp “Delivery of Health Care”/ (1984785)
  12. service delivery.ab,ti. (10886)
  13. 11 or 12 (1989119)
  14. patient satisfaction.ab,ti. (31312)
  15. exp patient satisfaction/ (108716)
  16. 14 or 15 (118255)
  17. intervention*.ab,ti. (827093)
  18. (patient adj reported adj outcome adj measure*).ab,ti. (451)
  19. quality of life.ab,ti. (218664)
  20. (SF36 or SF-36).ab,ti. (20584)
  21. EQ5D.ab,ti. (202)
  22. editorial.pt. (628387)
  23. exp “Quality of Life”/ (253171)
  24. or/17–23 (1727293)
  25. 10 and 13 and 16 (12437)
  26. 25 not 24 (9386)
  27. limit 26 to (english language and humans) (8174)
  28. limit 27 to yr=“2000 -Current” (6238)
  29. exp Diabetes Mellitus/ (667847)
  30. exp Diabetes Insipidus/ (15210)
  31. diabetes.ab,ti. (535657)
  32. or/29–31 (798468)
  33. 28 and 32 (179)
  34. remove duplicates from 33 (150)

PsycInfo

No relevant year or language limiters available.

Wed Dec 15 10:40:36 EST 2010 CSA Database: PsycINFO

Query: (KW=diabet*) and(((TI=((Patient experience*) or (Patient perspective*) or (patient attitude*)) or TI=((patient view*) or (patient opinion*) or (patient expectation*)) or TI=((patient satisfaction) or (patient need*))) or(AB=((Patient experience*) or (Patient perspective*) or (patient attitude*)) or AB=((patient view*) or (patient opinion*) or (patient expectation*)) or AB=((patient satisfaction) or (patient need*)))) or(DE=information)) – Total hits = 136

Assia

Limited to 1995 – 2010, English only

Wed Dec 15 11:07:33 EST 2010 CSA

Query: (KW=diabet*) and(((TI=((Patient experience*) or (Patient perspective*) or (patient attitude*)) or TI=((patient view*) or (patient opinion*) or (patient expectation*)) or TI=((patient satisfaction) or (patient need*))) or(AB=((Patient experience*) or (Patient perspective*) or (patient attitude*)) or AB=((patient view*) or (patient opinion*) or (patient expectation*)) or AB=((patient satisfaction) or (patient need*)))) or(DE=information)) – Total hits = 74

Cinahl

Search 1

S5.

S3 and S4 Search modes - Boolean/Phrase - View Results (1616)

S4.

S1 or S2 Search modes - Boolean/Phrase - View Results (73840)

S3.

TX diabet* Search modes - Boolean/Phrase - View Results (68559)

S2.

MW Information Limiters - Published Date from: 19950101-20101231; English Language; Exclude MEDLINE records - View Results (62154)

S1.

TX Patient experience* or TX patient perspective* or TX patient attitude* or TX patient view* or TX patient opinion* or TX patient expectation* or TX patient experience* or TX patient satisfaction or TX patient need* Limiters - Published Date from: 19950101-20101231; English Language; Exclude MEDLINE records View Results (12268)

Search 2

S4.

S1 and S2 and S3 Search modes - Boolean/Phrase - View Results (32)

S3.

TX diabet* Search modes - Boolean/Phrase - View Results (68559)

S2.

MW Information Limiters - Published Date from: 19950101-20101231; English Language; Exclude MEDLINE records - View Results (62154)

S1.

TX Patient experience* or TX patient perspective* or TX patient attitude* or TX patient view* or TX patient opinion* or TX patient expectation* or TX patient experience* or TX patient satisfaction or TX patient need* Limiters - Published Date from: 19950101-20101231; English Language; Exclude MEDLINE records - View Results (12268)

Copyright © 2012, National Clinical Guideline Centre.

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Bookshelf ID: NBK115227
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